tag:blogger.com,1999:blog-15563715610079533362024-03-16T16:44:19.431-07:00Bad CrippleParalyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.comBlogger843125tag:blogger.com,1999:blog-1556371561007953336.post-65787771833488487782019-05-02T08:03:00.001-07:002019-05-02T08:03:10.436-07:00Airline Statistics on Destruction of Wheelchairs Placed in Cargo HoldVirtually all wheelchairs are placed in the cargo hold of airplanes. Certainly all power wheelchairs and scooters are placed in the cargo. The overwhelming majority of manual wheelchairs end up in the cargo hold. Even though required by law to place a folding wheelchair in the cabin this rarely happens. The angst experienced by people with a disability that use expensive custom fit wheelchairs is significant when they fly. I am not only exceedingly nervous I will be injured by airline personnel getting me to my seat but distraught the second my wheelchair is taken by ground personnel. Every person I know that uses a wheelchair is fearful their wheelchair will be destroyed. When this happens to a person with a disability it is life altering. I cannot think of a single wheelchair user I know whose wheelchair has not been damaged or destroyed by an airline. Indeed, I know multiple people who have had several wheelchairs destroyed by an airline. Thanks to the FAA Reorganization Act of 2018 we now have three months of data regarding how many wheelchairs airlines have destroyed. The results are as expected--bad. The airline industry destroys a lot of wheelchairs. Major airlines destroy 23 wheelchairs a day and in three months have destroyed 1,975 wheelchairs. Many lives have been devastated.<br />
<br />
I anticipated the airlines most likely to destroy a wheelchair would be American Airlines, Delta Airlines and United Airlines. Based on three months of reporting, these are indeed the worst airlines to fly for any person that uses a wheelchair. Link: <a href="https://www.transportation.gov/sites/dot.gov/files/docs/resources/individuals/aviation-consumer-protection/337111/april-2019-atcr.pdf">https://www.transportation.gov/sites/dot.gov/files/docs/resources/individuals/aviation-consumer-protection/337111/april-2019-atcr.pdf</a> See pages 35 to 37. Below are the results for the month of February 2019. <br />
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<div class="page" title="Page 37">
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<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">AIR TRAVEL CONSUMER REPORT<br />MISHANDLED WHEELCHAIRS AND SCOOTERS: RANKING OF U.S. REPORTING OPERATING CARRIERS* (MONTHLY)</span></div>
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<span style="font-family: Calibri; font-size: 11pt;">37</span></div>
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<span style="color: white; font-family: Arial; font-size: 8pt; font-weight: 700;">RANK</span></div>
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<img alt="page37image125321168" height="1.440000" src="blob:https://www.blogger.com/f0309054-40f8-4e1d-9c4a-3ba198f51eb8" width="1.440000" /></td><td colspan="1" rowspan="2" style="background-color: #17365d; border-color: rgb(9, 22, 39) rgb(0, 0, 0) rgb(0, 0, 0); border-style: solid; border-width: 2.16pt 1.44pt 0.72pt;"><div class="layoutArea">
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<span style="color: white; font-family: Arial; font-size: 8pt; font-weight: 700;">CARRIER</span></div>
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</td><td colspan="3" rowspan="1" style="background-color: #17365d; border-color: rgb(9, 22, 39) rgb(0, 0, 0) rgb(15, 37, 67); border-style: solid; border-width: 2.16pt 0.48pt 1.441pt 1.44pt;"><div class="layoutArea">
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<span style="color: white; font-family: Arial; font-size: 8pt; font-weight: 700;">FEBRUARY 2019</span></div>
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<tr><td style="background-color: #17365d; border-color: rgb(20, 46, 79) rgb(0, 0, 0) rgb(0, 0, 0); border-style: solid; border-width: 1.441pt 0.48pt 0.72pt 1.44pt;"><img alt="page37image125165984" height="36.960000" src="blob:https://www.blogger.com/3c5068d2-5253-4d02-8763-be85abe3b0a1" width="69.600000" /><div class="layoutArea">
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<span style="color: white; font-family: Arial; font-size: 7pt; font-weight: 700;">NUMBER OF WHEELCHAIRS AND SCOOTERS ENPLANED</span></div>
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<img alt="page37image125306256" height="8.160000" src="blob:https://www.blogger.com/590d601f-e7d7-46ff-b38d-d5000a676366" width="68.400000" /><img alt="page37image125148464" height="7.920000" src="blob:https://www.blogger.com/bcc679d6-6833-49e5-8c20-173075d3ec9c" width="68.400000" /></td><td style="background-color: #17365d; border-color: rgb(20, 46, 79) rgb(0, 0, 0) rgb(0, 0, 0); border-style: solid; border-width: 1.441pt 0.48pt 0.72pt;"><img alt="page37image124975232" height="36.960000" src="blob:https://www.blogger.com/b4100f5e-0460-4349-a73d-fe5ae23ab2a1" width="69.840000" /><div class="layoutArea">
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<span style="color: white; font-family: Arial; font-size: 7pt; font-weight: 700;">NUMBER OF WHEELCHAIRS AND SCOOTERS MISHANDLED</span></div>
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<img alt="page37image125000688" height="8.160000" src="blob:https://www.blogger.com/9846b068-eb2c-497d-8137-34c85e977ff2" width="68.400000" /><img alt="page37image125304000" height="7.920000" src="blob:https://www.blogger.com/ca200979-1ee1-4c2a-916d-362eedb99c5d" width="68.400000" /></td><td style="background-color: #17365d; border-color: rgb(20, 46, 79) rgb(0, 0, 0) rgb(0, 0, 0); border-style: solid; border-width: 1.441pt 0.48pt 0.72pt;"><img alt="page37image125149440" height="36.960000" src="blob:https://www.blogger.com/31dec278-c33b-4323-b599-6aa72bebf6ee" width="83.040000" /><div class="layoutArea">
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<span style="color: white; font-family: Arial; font-size: 7pt; font-weight: 700;">PERCENT OF WHEELCHAIRS AND SCOOTERS MISHANDLED</span></div>
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<img alt="page37image125172176" height="8.160000" src="blob:https://www.blogger.com/969d4dfa-bcae-4266-a55d-3a1269f0eaf1" width="81.841000" /><img alt="page37image125355680" height="7.920000" src="blob:https://www.blogger.com/c6a5e852-ac11-490d-84e3-c87ed87e0673" width="81.841000" /></td></tr>
<tr><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 1.44pt 0.721pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">1</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 1.44pt 0.721pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">ENDEAVOR AIR</span></div>
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</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt 0.721pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">836</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt 0.721pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">4</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt 0.721pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">0.48</span></div>
</div>
</td></tr>
<tr><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">2</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">DELTA AIR LINES</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 0.48pt 0.721pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">8,969</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">77</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">0.86</span></div>
</div>
</td></tr>
<tr><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">3</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">UNITED AIRLINES</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 0.48pt 0.721pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">5,500</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">50</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">0.91</span></div>
</div>
</td></tr>
<tr><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">4</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">ALLEGIANT AIR</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 0.48pt 0.721pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">1,205</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">12</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">1.00</span></div>
</div>
</td></tr>
<tr><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 1.44pt 0.72pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">5</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 1.44pt 0.72pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">SKYWEST AIRLINES</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 0.48pt 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">2,124</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 0.48pt 0.72pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">23</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 0.48pt 0.72pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">1.08</span></div>
</div>
</td></tr>
<tr><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">6</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">HAWAIIAN AIRLINES</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">395</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">5</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">1.27</span></div>
</div>
</td></tr>
<tr><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">7</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">EXPRESSJET AIRLINES</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">228</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">3</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">1.32</span></div>
</div>
</td></tr>
<tr><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">8</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">ALASKA AIRLINES</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">1,323</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">22</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">1.66</span></div>
</div>
</td></tr>
<tr><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">9</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">SPIRIT AIRLINES</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">1,831</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">35</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">1.91</span></div>
</div>
</td></tr>
<tr><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">10</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">REPUBLIC AIRWAYS</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">354</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">7</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">1.98</span></div>
</div>
</td></tr>
<tr><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">11</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">FRONTIER AIRLINES</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">1,009</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">22</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">2.18</span></div>
</div>
</td></tr>
<tr><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 1.44pt 0.721pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">12</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 1.44pt 0.721pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">MESA AIRLINES</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt 0.721pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">225</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt 0.721pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">5</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt 0.721pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">2.22</span></div>
</div>
</td></tr>
<tr><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">13</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">SOUTHWEST AIRLINES</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 0.48pt 0.721pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">6,151</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">138</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">2.24</span></div>
</div>
</td></tr>
<tr><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">14</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">JETBLUE AIRWAYS</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 0.48pt 0.721pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">1,270</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">36</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">2.83</span></div>
</div>
</td></tr>
<tr><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 1.44pt 0.72pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">15</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 1.44pt 0.72pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">AMERICAN AIRLINES**</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 0.48pt 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">2,572</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 0.48pt 0.72pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">113</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.721pt 0.48pt 0.72pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">4.39</span></div>
</div>
</td></tr>
<tr><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">16</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">ENVOY AIR</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">141</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">11</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">7.80</span></div>
</div>
</td></tr>
<tr><td style="border-color: rgb(0, 0, 0) rgb(0, 0, 0) rgb(8, 20, 36); border-style: solid; border-width: 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">17</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0) rgb(0, 0, 0) rgb(9, 22, 39); border-style: solid; border-width: 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">PSA AIRLINES</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0) rgb(0, 0, 0) rgb(9, 22, 39); border-style: solid; border-width: 0.72pt 0.48pt 0.72pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">110</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0) rgb(0, 0, 0) rgb(9, 22, 39); border-style: solid; border-width: 0.72pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">14</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0) rgb(0, 0, 0) rgb(9, 22, 39); border-style: solid; border-width: 0.72pt 0.48pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">12.73</span></div>
</div>
</td></tr>
<tr><td style="background-color: #17365d; border-color: rgb(8, 20, 36) rgb(0, 0, 0) rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 1.44pt 1.44pt;"><img alt="page37image133439824" height="1.440000" src="blob:https://www.blogger.com/5972f8ae-1d8d-4cb5-90c8-864b6e194d3f" width="1.440000" /> <img alt="page37image133442544" height="1.440000" src="blob:https://www.blogger.com/8f90be13-6062-43e5-a999-5c1142ed9fb5" width="1.440000" /></td><td style="background-color: #17365d; border-color: rgb(9, 22, 39) rgb(0, 0, 0) rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 1.44pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="color: white; font-family: Arial; font-size: 8pt; font-weight: 700;">TOTAL</span></div>
</div>
</td><td style="background-color: #17365d; border-color: rgb(9, 22, 39) rgb(0, 0, 0) rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt 1.44pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="color: white; font-family: Arial; font-size: 8pt; font-weight: 700;">34,243</span></div>
</div>
<img alt="page37image133448112" height="1.440000" src="blob:https://www.blogger.com/bdced4b7-d18b-4f98-b28d-faddc1de94db" width="1.440000" /> <img alt="page37image133444976" height="1.440000" src="blob:https://www.blogger.com/ac5fd742-2ae8-4801-be13-7e1552e67c79" width="1.440000" /></td><td style="background-color: #17365d; border-color: rgb(9, 22, 39) rgb(0, 0, 0) rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="color: white; font-family: Arial; font-size: 8pt; font-weight: 700;">577</span></div>
</div>
<img alt="page37image133450848" height="1.440000" src="blob:https://www.blogger.com/2e38da13-dea1-45f2-b967-e71849c16d45" width="1.440000" /></td><td style="background-color: #17365d; border-color: rgb(9, 22, 39) rgb(0, 0, 0) rgb(0, 0, 0); border-style: solid; border-width: 0.72pt 0.48pt 1.44pt;"><div class="layoutArea">
<div class="column">
<span style="color: white; font-family: Arial; font-size: 8pt; font-weight: 700;">1.69</span></div>
</div>
</td></tr>
</tbody></table>
<div class="layoutArea">
<div class="column">
<span style="font-family: ArialMT; font-size: 8pt;">* </span><span style="font-family: Arial; font-size: 8pt; font-weight: 700;">All U.S. airlines with at least 0.5 percent of total domestic scheduled-service passenger revenues, as determined by DOT's Bureau of Transportation Statistics. (-) Data is not available for 2018. Comparison of 2020 and 2019 will appear in 2020 January-data ATCR.</span><br />
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">**American informed the Department that for February 2019, it reported mishandlings of all power-assisted and manual wheelchairs and scooters; however, American stated that its process for determining the enplanement number of wheelchairs and scooters may not have consistently accounted for all wheelchairs and scooters enplaned. American has also stated that this process may have impacted American’s wholly- owned subsidiary Envoy and American’s other branded code share carriers ExpressJet and SkyWest. American has indicated to the Department that it is enhancing its process to reliably capture all reportable enplaned wheelchairs and scooters, which may take a few months.</span><br />
<br />
<br />
Let's look at the worst offender: American Airlines. American Airlines still has not reliably developed a system to track all the wheelchairs placed in the cargo hold--a fact that does not inspire confidence given the fact they knew for well over a year this would be required. Based on admittedly incomplete reporting, American estimated it enplaned 2,572 wheelchairs and destroyed 113. This is misleading as American subsidiary airlines, Envoy Airlines, PSA Airlines, Endeavor Airline (an independent subsidiary that flies for American, Delta and United) enplane far fewer wheelchairs but the percentage of destroyed wheelchairs is significantly higher. By far the worst airline is American's subsidiary PSA Airline at 12.73% and Envoy Airline 7.8%<br />
<br />
I am sure industry analysts will crow about the low percentage of wheelchairs destroyed. What will not be mentioned is the aftermath of a destroyed wheelchair. Due to the negligence of the airline industry, nearly two thousand people have had their lives severely damaged. If the airline industry does not change immediately in twelve months they will likely destroy 8,000 wheelchairs. This is a staggering number and the implications to those with a disability are profound. We wheelchair users run gauntlet when we travel. The TSA aggressively pats us down, demeans us regularly, and asks rude and intrusive questions. When I go through security TSA guards address me as "wheelchair". Airline personnel, overwhelmed, over worked and under paid, are not much better. Those tasked with getting us on and off an airplane are among the lowest paid employees at an airport and poorly trained. I am routinely injured by these people who have no idea how to secure my legs to the aisle chair. I cannot think of the last time FAA regulations were actually followed when boarding.<br />
<br />
The devastation one experiences when your wheelchair is returned damaged beyond repair is overwhelming. When United Airlines destroyed my wheelchair I cried. I cried for my loss but I also knew that the destruction of my wheelchair would alter my life for months to come. You cannot go to the store or local rehabilitation facility and pick up a new wheelchair. For several days after United destroyed my wheelchair I could not bath nor could I get out of my apartment. A week later a badly fitting wheelchair arrived that I could manage with. Two weeks later I was assessed for a wheelchair by a seating specialist. Four weeks after that I was able to see two wheelchairs that might work and give them a spin. Seven weeks after my wheelchair was destroyed a new wheelchair was ordered. Another four weeks passed before my new wheelchair arrived. Amazingly, this is the best case scenario. Had I been a power chair user I would likely waited for many more months.<br />
<br />
Reading the stats above, it made me think deeply about ingrained ableism. Imagine if a person without a disability was told they had to wait seven to eight weeks after their flight to have their favorite widget replaced. And it is not just the airline industry that. makes us wait. I know a person who was in a car accident. The car's hand controls were damaged. It took eight weeks to repair them. This is among the most disabling part of disability--the waiting and time lost. Like the poor, we wait for everything. First on, last off an airplane. Time lost. Wait for the elevator or single accessible stall in an airport. Wait for the mysterious accessible shuttle bus that no one knows where it is located. Try to enter a hotel? The main entrance is not accessible. Press bell and go to side entrance. More time lost. Check into a hotel and seemingly thousands of key strokes are required to be entered into computer. You get to the supposedly accessible room and the bed is so high a transfer is impossible or the bathroom is not remotely accessible. Check out of the hotel and find another place to stay. More time lost. Go out to eat. The restaurant has a single table where they seat all wheelchair users (I call it the cripple table). The fact oodles of tables are empty means nothing. You can wait.<br />
<br />
To the above I could add thousands of other needles barriers people with a disability encounter daily. What happens when I point out such gross inequities? I am considered a whiner. Surely I exaggerate! It is always a one time singularly unusual event. Disability is not a tragedy. Disability is not a one off. Disability is part of the human condition. All the technology in the world cannot solve the disability problem because we people with a disability are not a problem. What we people with a disability need is for typical others to get out of our way and stop inventing "disability dongles"--defined by Liz Jackson as "<i>a well intended elegant, yet useless solution to a problem we never knew we had"</i>. Link: <a href="https://www.vox.com/first-person/2019/4/30/18523006/disabled-wheelchair-access-ramps-stair-climbing">https://www.vox.com/first-person/2019/4/30/18523006/disabled-wheelchair-access-ramps-stair-climbing</a> I for one am quite content to navigate the world from my empowering wheelchair provided the airlines don't destroy it or have typical others decide access and inclusion of people with a disability is not worth the expense. This is not whining. This is asserting one's civil rights. And if I make others feel uncomfortable then I know I am doing something right. </div>
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william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com2tag:blogger.com,1999:blog-1556371561007953336.post-50983970408098987712019-04-24T14:43:00.000-07:002019-04-24T14:43:05.992-07:00Worse Wound Care WoesDespite following wound care recommendations to the letter I am in worse shape today than I was six months ago. Sacrificing my quality of life has resulted in negative results. As of today, I have wounds on both hips, my butt and tailbone. I have no where to go to relieve pressure (lying on my stomach is impossible). For 40+ years I have known exactly how dangerous skin woes can be. I have always had a visceral fear of wounds and been exceedingly cautious. Even the most minor wound can send me into a tailspin of depression and fear because I know a minor wound can blossom into a life threatening wound in days. Sepsis can set in and one can die very quickly. I learned all about sepsis in 2010 when a wound almost ended my life. I also learned just how uncaring wound care specialists are. The lack of empathy is shocking to me especially given my work in bioethics where the academic literature about empathy, beneficence, and autonomy abounds. Empathy as a term was first used in 1908 by social scientists. It was not until after World War II and the atrocities committed during global warfare that the term empathy took on great importance. Bioethicists have been researching empathy and theorizing about it's importance for over 50 years now. In my estimation, bioethics as a field has failed to make a practical impact on health care. Worse, we Americans seem to be turning against empathy. For me and many others, empathy is different from sentimentality and pity--these are delivered from a position of superiority and fear. This absolves us from making systemic changes the would benefit all people. Write a check at the end of the year to your favorite charity and one need not worry about the cause you are dedicated to. One's conscious is clear for an entire year.<br />
<br />
Empathy in my estimation is the ability to acknowledge and identify the similarity of the human condition and create a foundation of mutual respect. Here I think of Eva Kittay and her new book <u>Learning From My Daughter: The Value and Care of Disabled Minds</u>. Within the confines of our health care system in general and wound care in particular empathy is absent. When I go to wound care I expect nothing--human emotion of any type is not expressed. What is seen is a wound not a human being. When I enter the hospital I feel as though I am entering an iron cage of highly skilled health care professionals who cannot see beyond what is and is not covered by insurance. I get it. To be truly empathic requires hard work, deep thought, and rigorous self examination. No wound care professional has ever done the hard work empathy requires. Thus when I see the wound care doctor I am on an uncomfortable examination table covered with a sheet. Prior to seeing the doctor a nurse removes the wound dressings and leaves the room. My wound is examined by the doctor. Conversation about the wound ensues. My chart is rigorously maintained and everything that takes place is documented in detail. Any discussion of dressings and future care is discussed when I am on the examination room table covered with a sheet. The examination table is uncomfortable in the extreme. I find this unethical but efficient and dare I saw a profitable practice. In some deep dark cubby an actuary is smiling at the efficiency. The wound care doctor can spin rooms at warp speed. What they do not do is express one iota of empathy. No encouragement is offered. No time table given for when one might be healed. I can think of no other medical specialization that is as distant and uncaring as wound care. Every other specialist I have seen wraps up the meeting by talking to you in an office when you are dressed and comfortable--in equal and mutually respectful positions. Wound care does not deem this necessary.<br />
<br />
Empathy in health care is now selective. It is reserved for those deemed worthy. No wound care patients are not worthy. Indeed, we are made to feel like the enemy and silently and sometimes directly blamed for our skin woes. We are viewed as uniformly non compliant. Selective empathy when disability and health care collide are a deadly force. I have been bed bound for about six months. Three of the wounds I have are a result of being bed bound. Insurance does not cover anything bed related that would relieve pressure. Insurance covers gauze pads and no other dressing. In the last few months I have spent well in excess of $10,000 on copays, wound care dressings, and various tests. When I bring this up with wound care there is an uncomfortable silence and vague suggestions are made about possible programs I could benefit from. Nothing ever comes to fruition. If I point out the practical flaws involved in wound care the response is silence. The wound care doctor knows I am screwed. I know I am screwed. With four wounds I have no where to go. No matter what I do I cannot relive pressure on all four wounds. This is a lethal problem. The solution is obvious but unaffordable. A clinitron bed or air fluidized therapy would relieve all pressure. To purchase or rent such a bed would cost well into six figures and no insurance company will cover such treatment. For me to access a Clinton bed I would need to become septic. If septic I would be hospitalized and placed in a clinitron bed. Once sepsis is cleared I would be sent home and to the same bed that caused my wounds. An obvious pattern would emerge. Bouts of sepsis, an increasing number of wounds and hospitalizations. Over the period of time my body will weaken, sepsis will become increasingly difficult to treat and recover from. I will likely catch a very bad infection in the hospital and succumb to infection. This is a miserable way to die. It is a human rights disaster that has befallen many a paralyzed person.<br />
<br />
If I have learned anything in dealing with wound care it is that disability itself is part of the human condition and doctors are ill prepared to deal with a body such as mine or any person with a disability. The lack of value placed on my care, in this case wound care, is a miscarriage of justice. I feel as though I am an indicator species for our health care system. I serve as a measure of the environmental conditions that exist in our health care system. And believe me when I say our health care system is rotten to the core. Scores of people die needlessly.<br />
<br />
My skin woes have made me think a lot about Carrie Ann Lucas the famous disability rights activist who recently died. Her death received a lot of attention in part because she was vocal about what led to the end of her life. An arbitrary denial from an insurance company caused a plethora of health problems, exacerbating her disabilities that eventually caused her death. I am going to the same hospital as Carrie Ann Lucas. I have the same insurance company. I assume at some point an arbitrary insurance denial may lead to my death as well. This is a huge problem no one seems to care about. Indeed, Forbes article about Lucas's death was titled "Carrie Ann Lucas Dies at Age 47: You Haven't Heard of Her and That's a Problem". Link: <a href="https://www.forbes.com/sites/sarahkim/2019/02/25/carrie-ann-lucas-dies/#37210ca8119e">https://www.forbes.com/sites/sarahkim/2019/02/25/carrie-ann-lucas-dies/#37210ca8119e</a> I am certain my concerns about health care, wound care in particular, are not under consideration. Ethics, empathy, beneficence and autonomy, variables that should be of central importance, are utterly absent from wound care programs. And if I note people with disabilities are needlessly dying wound care specialists would deem me hysterical or an alarmist. I get this. All they see is a wound.william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com5tag:blogger.com,1999:blog-1556371561007953336.post-46256129638298644882019-04-10T15:50:00.002-07:002019-04-10T15:50:18.032-07:00Wound Care WoesI hate wound care. These appointments have always made me anxious in the extreme. There is always the possibility for disastrous news. That news could mean immediate hospitalization, surgical debridement, or being told not to sit up for weeks or months. While I look at my wounds daily, note plural, it is impossible to get an accurate senes of how they are doing. And yes I now have more than one wound. This is very common. In not sitting up for months on end I am over compensating and putting more pressure on other areas of my body that would not normally breakdown. In the Fall I started out with a very small but deep wound on my butt. This wound has filled in and has vastly improved but now have an even worse wound on my hip. I am now five months into wound care. I have a long way to go before I am healed. An entire academic year has been lost. A trip to Europe was cancelled and I am worried. Healing is getting harder and more laborious. I am not getting any younger and even the most minor of wounds take a long time to heal. I am most worried about my sitting time. Are my days of a cast iron ass and long work days over? Am I going to need hours a day in bed to relieve pressure on my butt? If I cannot sit up all day without my skin breaking down my quality of life will be severely impacted. It is entirely possible I will need to learn to live with repeated skin break downs. It is possible future wounds will not heal. It is a distinct possibility one of these wounds and resulting sepsis will end my life. I fear this the most. This is a grim assessment and one the wound care doctor believes is overly pessimistic. She stated people can live for many years with moderate to severe wounds.<br />
<br />
What upsets me about wound care the most is not new: wound care professionals display no compassion, appear not to care one iota, and never provide words of encouragement. No doctor I have ever met aspired to become a wound care doctor. Health care professionals fall into wound care for a host of reasons. Based on my experience, wound care is medical back water or dead end. When I see the cardiologist the waiting room is well appointed. Cushy chairs abound, there is a fireplace in the waiting room, examination rooms are spotless, and expensive technology abounds. Visiting the cardiologist is akin to walking in a very expensive hotel where amenities abound. Wound care has none of these amenities. The waiting room where I see the wound care doctor is a wide hallway. An ancient television is on the wall tuned into a TV show that is blaring away. No one pays attention to the TV. The carpet is well worn and grimy. Chairs abound and there is no where I can comfortably sit. Examination rooms are mostly clean but antiquated. There is only one procedure room with an accessible examination table. The light in the room that could be used to brightly illuminate a wound has been broken since November. The people waiting for wound care are subject to a cattle call. I had an 11AM appointment as did at least six other people. We wound care patients are down trodden--obese people, amputees, diabetics, the paralyzed, and the occasional terminally ill patient. We are a scruffy lot. Those that use wheelchairs have battered equipment that is often filthy. Amputees have ancient prosthetics or none at all. We are all miserable and alone. No one escapes wound care without experiencing depression. The physical and mental toll months of healing take are enormous. Many do not survive. The economic impact of wound care is devastating. I have excellent private insurance. If I needed advanced cardiac care that would potentially run into millions of dollars I would be 100% covered (no deductibles and copays). But I do not need advanced cardiac care. I need wound care and no private insurance effectively covers wound care. Sure they cover the doctor visits. My copay is $75. Since November I have seen the wound care doctor about every two weeks. That $75 copay adds up fast. The deductible for wound care is $20,000 and insurance provides severely limited coverage for wound care supplies. These supplies are astronomically expensive. If I were to use a wound vacuum, with insurance, it would cost $1,200 a week after the first $20,000. My wounds are not severe enough for a wound vacuum but my dressings are far from cheap. My dressings need to be changed daily. I use a foam island dressing and calcium alginate pad. These are very expensive products. Between November and today I have sent many many thousands of dollars on wound care supplies. People have urged me to start a go fund me campaign. I have agonized over this. Others are in far worse shape personally and financially. I just cannot do it. I will go without before I ask for money from friends. I have no relationship with my remaining family so familial support is out.<br />
<br />
How does wound care deal with the cost of wound care supplies and its impact on patients? They don't. The doctors and wound care nurses have no idea how much the wound care supplies they use everyday cost. They know they are expensive but when quizzed they are surprised to learn the real cost. Wound care professionals listen very carefully but express no sympathy or understanding. To assuage themselves they give me two or three foam island dressings and I am sent on my way. What am I supposed do when the two day supply they kindly give me runs out? That issue is never discussed. When questioned silence ensues or vague suggestions are made. An hour from my home is a non profit organization that carries steeply discounted wound care supplies and durable medical equipment. Store hours are limited and no exact inventory is maintained. I get this. The store is run entirely through donations and volunteers. What am I to do? Wound care tells me to sit no more than 30 minutes at any one time. The trip to the non profit store requires a minimum of two hours sitting. This non profit store of durable medical goods is great in theory and I have no doubt some benefit greatly. Yet for the wound care patient accessing the store is impossible. When I detail why this suggestion is useless there is an uncomfortable silence. There are many silences when one details why suggestions made are impractical. <br />
<br />
I do not understand wound care. The entire field is wholly focused on the wound to the exclusion of all else. Lip service is paid to nutrition. Mental health is completely ignored. I am asked at every appointment "<i>Are you depressed?</i>" I answer yes. The reply is "<i>do you have any inclination for self harm?</i>" I answer no. That is the extent of mental health assistance. Pressure relief is the begin and end all. Do not put any pressure on a wound. None. This is wound care mantra. This is solid medical advice. Pressure relief works 100% of the time. The consequences of pressure relief are never addressed. When a person does not relieve all pressure they are deemed non compliant. Wound care doctors I have spoken to estimate 90% of their patients are not compliant. Tension over pressure relief and frequency of dressing change exists between doctor and patient. In November I was deeply depressed over the state of my skin. I was not eating and the wound care doctor explained I would never heal if I did not eat. At that time she recommended I sit for no more than 10 minutes at one time. I asked her to create a meal that could be cooked, consumed, and cleaned in less than 10 minutes. Silence ensued. The most I have ever had a wound care doctor say that was remotely compassionate was that "<i>healing a wound is tricky</i>".<br />
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I am not the average wound care patient. I am highly educated and articulate. I am compliant in the extreme. For months on end I have severely restricted my sitting time. I have missed the entire academic year healing, my income has dropped dramatically, and wound care supplies have been frightfully expensive. I doubt the wound care doctor likes me. Frankly, I don't care. I am sure she does not believe I am as compliant as I state. I am equally sure each wound patient is deeply stigmatized. What is never questioned in wound care is why are patients not compliant. While I change my dressings daily many others cannot afford to do so. Many change dressings every other day or every third day. This greatly slows the healing process and can make wounds worse. I am a scholar so I can theoretically work anywhere. But without the ability to sit up my research on the Gang of 19 here in Denver has ground to a halt. I cannot go to the library archive to advance my work. I am very well aware that I am in a best case scenario and far luckier than most. I have a robust network of help and my son lives nearby. What if I were teaching or what if I had a typical job that required I be an office every day? That person simply cannot follow medical advice and when the wound invariably gets worse it is the patients fault.<br />
<br />
I have thought about wound care off and on for years. Much of wound care research is centered on the elderly who are most likely to develop a wound before or after a significant illness. Every year $10 billion dollars are spent on wound care--the vast majority of it going to elder care. I read a great deal about ethical care. We supposedly value patient preferences, beneficence, justice, decision making, respect for autonomy, and patients rights. These values are absent in wound care as I have experienced it. What is rampant is apathy. I understand apathy. I am exposed to it every time I access health care. Apathy literally means without feeling. Wound care professionals are apathetic. They have no feelings. After almost six months, I have absolutely no rapport with the wound care doctor. I have never had a rapport with a wound care professional. None of the people I have met care--they are without feeling. No need to worry about burn out or compassion fatigue. The indifference displayed by wound care professionals is hard for me to comprehend. I often wonder why did they become health care professionals? Regardless of the etiology of apathy, its impact on people such as myself is profound. I hate wound care because I know the doctor I see does not care about me or the consequences of sound medical advice given. Going to wound care ironically requires much sitting that prevents one from healing. Precious time sitting is utterly wasted from my perspective. I feel worse after wound care appointments physically and mentally. Pain control is never a source of discussion. Many times I have been told how lucky I am that paralyzed people cannot feel anything. I feel for sure. I cannot say the same about the many wound care doctors I have met. For me, neuropathic pain I experience after a debridement is felt six to eight hours after a procedure. The wound care doctor I see has no idea I experience such pain. As noted, pain is not subject to discussion. So much is not discussed at wound care that has a profound a direct impact on healing a wound. This lack of discussion results in vague comments such as wounds are tricky to heal. Exactly why wounds are tricky to heal is never addressed.<br />
<br />
Wound care can be revolutionized to meet the needs of people with wounds. First, apathetic wound care specialists have no place in the profession. Apathy must be rooted out with vigor. Second, wound care must buy into being proactive health care professionals. They must see more than just a wound. Each and every wound must be understood in the larger social context of social supports or lackthereof. Third, professional advocacy. Wound care patients are not compliant for a reason. Those issues must be addressed at gatherings of wound care professionals. Fourth, wound care nurses must lead the way. They are on the front line of care. Only they can end the apathy that grips the field. Only they can provide the empathy others crave when socially isolated and alone. The barriers to healing are not physical. The most significant barriers are largely social and it behooves wound care professionals to address this immediately. Even if they fail they will succeed for they will have shred the bonds of apathy.william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com2tag:blogger.com,1999:blog-1556371561007953336.post-23091542540839570702019-03-15T14:14:00.000-07:002019-03-15T14:14:17.128-07:00Wheelchairs and Mobility Devices Destroyed or Damaged by AirlinesOver a year ago the major airlines in the United States were made aware that for the first time they would be required by law to report the number of wheelchairs and scooters they destroyed or damaged. Prior to December 4, 2018 a wheelchair or scooter was classified as luggage. No data on on how many wheelchairs and scooters destroyed or damaged by airlines had ever been compiled. As anyone who uses a wheelchair knows, horror stories abound about the large number of wheelchairs destroyed by airlines. Thanks to the FAA Reauthorization Act American based carriers are now required to record the number of wheelchairs and scooters it breaks per month. Link: <a href="https://www.federalregister.gov/documents/2018/10/26/2018-23475/airline-reporting-of-data-on-mishandled-baggage-wheelchairs-and-scooters">https://www.federalregister.gov/documents/2018/10/26/2018-23475/airline-reporting-of-data-on-mishandled-baggage-wheelchairs-and-scooters</a><br />
<br />
The first monthly report has been issued and it is an eye opener. Link: <a href="https://www.transportation.gov/sites/dot.gov/files/docs/resources/individuals/aviation-consumer-protection/333601/february2019atcr.pdf">https://www.transportation.gov/sites/dot.gov/files/docs/resources/individuals/aviation-consumer-protection/333601/february2019atcr.pdf</a> If one navigates to page 37 you will find the below chart:<br />
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<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">AIR TRAVEL CONSUMER REPORT<br />MISHANDLED WHEELCHAIRS AND SCOOTERS: RANKING LARGE U.S. REPORTING CARRIERS*</span></div>
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<table style="border-collapse: collapse;"><colgroup><col style="width: 0px;"></col><col style="width: 0px;"></col><col style="width: 0px;"></col><col style="width: 0px;"></col><col style="width: 0px;"></col><col style="width: 0px;"></col><col style="width: 0px;"></col><col style="width: 0px;"></col><col style="width: 0px;"></col></colgroup><tbody>
<tr><td style="border-bottom-color: rgb(22, 52, 91); border-left-color: rgb(0, 0, 0); border-style: solid; border-top-color: rgb(0, 0, 0); border-width: 0.48pt 0pt 1.44pt 0.481pt;"><img alt="page38image114397472" height="0.481000" src="blob:https://www.blogger.com/42a5c2ab-a371-44d7-987b-3653b181cf87" width="0.481000" /></td><td style="background-color: #17365d; border-bottom-color: rgb(21, 54, 93); border-style: solid; border-top-color: rgb(0, 0, 0); border-width: 0.48pt 0pt 1.44pt;"></td><td style="border-bottom-color: rgb(22, 52, 91); border-right-color: rgb(0, 0, 0); border-style: solid; border-top-color: rgb(0, 0, 0); border-width: 0.48pt 0.6pt 1.44pt 0pt;"></td><td style="border-bottom-color: rgb(20, 53, 90); border-left-color: rgb(0, 0, 0); border-style: solid; border-top-color: rgb(0, 0, 0); border-width: 0.48pt 0pt 1.44pt 0.6pt;"></td><td style="background-color: #17365d; border-bottom-color: rgb(21, 54, 93); border-style: solid; border-top-color: rgb(0, 0, 0); border-width: 0.48pt 0pt 1.44pt;"></td><td style="border-bottom-color: rgb(22, 52, 91); border-right-color: rgb(0, 0, 0); border-style: solid; border-top-color: rgb(0, 0, 0); border-width: 0.48pt 0.601pt 1.44pt 0pt;"><img alt="page38image116195088" height="0.481000" src="blob:https://www.blogger.com/eeb7d84b-9cea-4347-9135-42f0023aa733" width="0.481000" /></td><td colspan="3" rowspan="1" style="background-color: #17365d; border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt 1.44pt 0.601pt;"><div class="layoutArea">
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<span style="color: white; font-family: Arial; font-size: 8pt; font-weight: 700;">DECEMBER 4 - DECEMBER 31, 2018</span></div>
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<img alt="page38image116201072" height="0.481000" src="blob:https://www.blogger.com/c78fe82a-abf1-4859-941f-cbd9936c1549" width="71.999000" /> <img alt="page38image116201632" height="0.481000" src="blob:https://www.blogger.com/ab662c1e-1816-48e1-9970-701791e786fd" width="71.999000" /> <img alt="page38image116202256" height="0.481000" src="blob:https://www.blogger.com/f2538c06-cee2-40ba-a88b-859147dd9007" width="0.481000" /></td></tr>
<tr><td colspan="3" rowspan="1" style="background-color: #17365d; border-color: rgb(21, 52, 92) rgb(0, 0, 0) rgb(0, 0, 0); border-style: solid; border-width: 1.44pt 0.6pt 0.48pt 0.481pt;"><div class="layoutArea">
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<span style="color: white; font-family: Arial; font-size: 8pt; font-weight: 700;">RANK</span></div>
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</td><td colspan="3" rowspan="1" style="background-color: #17365d; border-color: rgb(21, 51, 91) rgb(0, 0, 0) rgb(0, 0, 0); border-style: solid; border-width: 1.44pt 0.601pt 0.48pt 0.6pt;"><div class="layoutArea">
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<span style="color: white; font-family: Arial; font-size: 8pt; font-weight: 700;">CARRIER</span></div>
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</td><td style="background-color: #bfbfbf; border-color: rgb(0, 0, 0); border-style: solid; border-width: 1.44pt 0.481pt 0.48pt 0.601pt;"><img alt="page38image116207600" height="48.360000" src="blob:https://www.blogger.com/778d163b-805e-4644-a728-a77d439df095" width="65.400000" /><div class="layoutArea">
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<span style="font-family: Arial; font-size: 7pt; font-weight: 700;">NUMBER OF WHEELCHAIRS AND SCOOTERS ENPLANED</span></div>
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<img alt="page38image116214768" height="8.040000" src="blob:https://www.blogger.com/ccd03c8e-ddfe-44fa-b679-670c142df10b" width="55.200000" /><img alt="page38image116215152" height="8.040000" src="blob:https://www.blogger.com/7229dc75-2552-4fb7-a509-eb4697f94371" width="55.200000" /><img alt="page38image116215408" height="8.040000" src="blob:https://www.blogger.com/eae86593-73b0-45dc-b7a7-f06120364b7b" width="55.200000" /></td><td style="background-color: #bfbfbf; border-color: rgb(0, 0, 0); border-style: solid; border-width: 1.44pt 0.481pt 0.48pt;"><img alt="page38image116216864" height="48.360000" src="blob:https://www.blogger.com/9b4e3f4e-aff4-4ac4-a4c5-2f4656ec05af" width="71.520000" /><div class="layoutArea">
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<span style="font-family: Arial; font-size: 7pt; font-weight: 700;">NUMBER OF WHEELCHAIRS AND SCOOTERS MISHANDLED</span></div>
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<img alt="page38image116221904" height="8.160000" src="blob:https://www.blogger.com/372ddb2b-6918-47d7-901f-5a32354b1785" width="61.200000" /><img alt="page38image116222224" height="8.040000" src="blob:https://www.blogger.com/9b6cc3b5-4ec3-4800-8438-0b89144dfafb" width="61.200000" /></td><td style="background-color: #bfbfbf; border-color: rgb(0, 0, 0); border-style: solid; border-width: 1.44pt 0.481pt 0.48pt;"><img alt="page38image116223744" height="48.360000" src="blob:https://www.blogger.com/9ab18f86-4fe7-4bb6-89d6-f89702cfe548" width="71.520000" /><div class="layoutArea">
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<span style="font-family: Arial; font-size: 7pt; font-weight: 700;">PERCENT OF WHEELCHAIRS AND SCOOTERS MISHANDLED</span></div>
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<img alt="page38image116228992" height="8.040000" src="blob:https://www.blogger.com/2cc0b8e7-8e7b-49e9-95f0-18edeb675151" width="61.200000" /><img alt="page38image116229248" height="8.160000" src="blob:https://www.blogger.com/1acf65f0-e477-49b2-96c1-1986f35bc2cc" width="61.200000" /><img alt="page38image116229632" height="8.040000" src="blob:https://www.blogger.com/dab802be-e0bf-4fd5-9d3c-40b0ee1aedca" width="61.200000" /><img alt="page38image116229888" height="8.040000" src="blob:https://www.blogger.com/9d24e5fb-e7bc-41c0-844b-fb09ef6efa6c" width="61.200000" /></td></tr>
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<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">1</span></div>
</div>
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<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">SKYWEST AIRLINES</span></div>
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<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">3,018</span></div>
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</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
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<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">24</span></div>
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<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">0.80%</span></div>
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</td></tr>
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<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">2</span></div>
</div>
</td><td colspan="3" rowspan="1" style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.601pt 0.48pt 0.6pt;"><div class="layoutArea">
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<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">DELTA AIR LINES</span></div>
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</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt 0.48pt 0.601pt;"><div class="layoutArea">
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<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">11,838</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">105</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
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<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">0.89%</span></div>
</div>
</td></tr>
<tr><td colspan="3" rowspan="1" style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.6pt 0.48pt 0.481pt;"><div class="layoutArea">
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<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">3</span></div>
</div>
</td><td colspan="3" rowspan="1" style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.601pt 0.48pt 0.6pt;"><div class="layoutArea">
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<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">UNITED AIRLINES</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt 0.48pt 0.601pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">7,307</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">80</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">1.09%</span></div>
</div>
</td></tr>
<tr><td colspan="3" rowspan="1" style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.6pt 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">4</span></div>
</div>
</td><td colspan="3" rowspan="1" style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.601pt 0.48pt 0.6pt;"><div class="layoutArea">
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<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">ALASKA AIRLINES</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt 0.48pt 0.601pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">1,126</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">14</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">1.24%</span></div>
</div>
</td></tr>
<tr><td colspan="3" rowspan="1" style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.6pt 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">5</span></div>
</div>
</td><td colspan="3" rowspan="1" style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.601pt 0.48pt 0.6pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">HAWAIIAN AIRLINES</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt 0.48pt 0.601pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">638</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">13</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">2.04%</span></div>
</div>
</td></tr>
<tr><td colspan="3" rowspan="1" style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.6pt 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">6</span></div>
</div>
</td><td colspan="3" rowspan="1" style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.601pt 0.48pt 0.6pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">SPIRIT AIRLINES</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt 0.48pt 0.601pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">1,442</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">33</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">2.29%</span></div>
</div>
</td></tr>
<tr><td colspan="3" rowspan="1" style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.6pt 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">7</span></div>
</div>
</td><td colspan="3" rowspan="1" style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.601pt 0.48pt 0.6pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">JETBLUE AIRWAYS</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt 0.48pt 0.601pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">1,121</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">45</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">4.01%</span></div>
</div>
</td></tr>
<tr><td colspan="3" rowspan="1" style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.6pt 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">8</span></div>
</div>
</td><td colspan="3" rowspan="1" style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.601pt 0.48pt 0.6pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">FRONTIER AIRLINES</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt 0.48pt 0.601pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">585</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">30</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">5.13%</span></div>
</div>
</td></tr>
<tr><td colspan="3" rowspan="1" style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.6pt 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">9</span></div>
</div>
</td><td colspan="3" rowspan="1" style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.601pt 0.48pt 0.6pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">EXPRESSJET AIRLINES</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt 0.48pt 0.601pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">75</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">4</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">5.33%</span></div>
</div>
</td></tr>
<tr><td colspan="3" rowspan="1" style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.6pt 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">10</span></div>
</div>
</td><td colspan="3" rowspan="1" style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.601pt 0.48pt 0.6pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">SOUTHWEST AIRLINES**</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt 0.48pt 0.601pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">2,879</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">186</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">6.46%</span></div>
</div>
</td></tr>
<tr><td colspan="3" rowspan="1" style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.6pt 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">11</span></div>
</div>
</td><td colspan="3" rowspan="1" style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.601pt 0.48pt 0.6pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">AMERICAN AIRLINES***</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt 0.48pt 0.601pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">2,091</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">151</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">7.22%</span></div>
</div>
</td></tr>
<tr><td colspan="3" rowspan="1" style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.6pt 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">12</span></div>
</div>
</td><td colspan="3" rowspan="1" style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.601pt 0.48pt 0.6pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">ENVOY AIR</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt 0.48pt 0.601pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">109</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">16</span></div>
</div>
</td><td style="border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">14.68%</span></div>
</div>
</td></tr>
<tr><td colspan="3" rowspan="1" style="background-color: #17365d; border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.6pt 0.48pt 0.481pt;"><img alt="page38image114029840" height="0.480000" src="blob:https://www.blogger.com/77504fe0-05da-48ac-b3a8-ebb7769adba8" width="0.480000" /></td><td colspan="3" rowspan="1" style="background-color: #17365d; border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.601pt 0.48pt 0.6pt;"><div class="layoutArea">
<div class="column">
<span style="color: white; font-family: Arial; font-size: 8pt; font-weight: 700;">TOTAL</span></div>
</div>
</td><td style="background-color: #17365d; border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt 0.48pt 0.601pt;"><div class="layoutArea">
<div class="column">
<span style="color: white; font-family: Arial; font-size: 8pt; font-weight: 700;">32,229</span></div>
</div>
</td><td style="background-color: #17365d; border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="color: white; font-family: Arial; font-size: 8pt; font-weight: 700;">701</span></div>
</div>
</td><td style="background-color: #17365d; border-color: rgb(0, 0, 0); border-style: solid; border-width: 0.48pt 0.481pt;"><div class="layoutArea">
<div class="column">
<span style="color: white; font-family: Arial; font-size: 8pt; font-weight: 700;">2.18%</span></div>
</div>
</td></tr>
</tbody></table>
</div>
<div class="page" title="Page 38">
<br /></div>
<div class="page" title="Page 38">
If you look closely there three asterisks. Those asterisks state: </div>
<div class="page" title="Page 38">
<br /></div>
<div class="page" title="Page 38">
<div class="page" title="Page 38">
<div class="layoutArea">
<div class="column">
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">* All U.S. airlines with at least one percent of total domestic scheduled-service passenger revenues, as determined by DOT's Bureau of Transportation Statistics.</span><br />
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">**Southwest informed the Department that for December 2018, it reported mishandlings of all power-assisted and manual wheelchairs and scooters; however, Southwest stated that its enplaned wheelchairs and scooters number did not include any manual wheelchairs enplaned by the carrier. Southwest has disclosed to the Department that it will have the ability to reliably capture manual wheelchairs enplaned on or after January 15, 2019, in its enplaned wheelchairs and scooters number submitted to the Department.</span><br />
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;">***American informed the Department that for December 2018, it reported mishandlings of all power-assisted and manual wheelchairs and scooters; however, American stated that its process for determining the enplanement number of wheelchairs and scooters may not have consistently accounted for all wheelchairs and scooters enplaned. American has also stated that this process may have impacted American’s wholly- owned subsidiary Envoy and American’s other branded code share carriers ExpressJet and SkyWest. American has indicated to the Department that it is enhancing its process to reliably capture all reportable enplaned wheelchairs and scooters, which may take a few months.</span><br />
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;"><br /></span>
<span style="font-family: Arial; font-size: 8pt; font-weight: 700;"><br /></span></div>
</div>
</div>
</div>
<div class="page" title="Page 38">
Between December 4, 2018 and December 31, 2018 701 wheelchairs and scooters were mishandled. Yes, the top twelve airlines on average break 25 wheelchairs and scooters a day. I love the wording-mishandled. How benign a word for stating airlines have irreparably damaged the life of a person with a disability. I hope the airline industry notes the total number of passengers that fly per month using wheelchairs or scooters: 32,229. A little basic math would indicate 386,748 people who use a wheelchair or scooter fly in a calendar year. This number is somewhat misleading--it only includes people who have their wheelchair or scooter put in a plane's cargo. I would suggest hundreds of thousands of others who use mobility devices also travel--those using a myriad of mobility devices such as canes, crutches, walkers, etc. No statistics for those that store mobility devices in the airplane cabin are recorded. No information about how long it takes for a passenger whose wheelchair or scooter is placed in the cargo hold is recorded. Most importantly, American Airlines and Southwest Airlines failed to track the number of wheelchairs and scooters it transported. See asterisks above. Despite having a year to institute tracking methodology American and Southwest failed to do so. </div>
<div class="page" title="Page 38">
<br /></div>
<div class="page" title="Page 38">
On the surface the number of broken wheelchairs and scooters seems minimal. Of 32,229 wheelchairs and scooters handled by the airlines 701, or 2.8% were destroyed or damaged. The worst airlines were American Airlines, its subsidiary, Envoy Air, Southwest, and Delta (worst here meaning the number of wheelchairs or scooters destroyed or broken). Surprising to me, United Airlines, the airline that destroyed my wheelchair, reported breaking 80 wheelchairs and scooters. I wonder what the airline industry thinks of these preliminary numbers. I suspect they will consider these numbers a positive. The naive may think so too. I think the numbers are appalling and misleading. A mere two percent chance exists that my wheelchair will be destroyed or damaged. Surely that is a risk most people are willing to take. At issue here is choice. Every time I fly I take chances others do not. I risk my wheelchair being destroyed or damaged. I risk my body being injured during the transfer into and out of an aisle wheelchair. I risk injury when improperly secured in the aisle wheelchair by the sub contractor hired by the airline to perform this task. I lose oodles of time every time getting on and off a plane. First on, last off adds at least an hour to my travel day and that is if everything goes right. None of this mentions that single row airplanes have no accessible bathroom. In other words while others know to be well hydrated when they fly I do the exact opposite--I severely dehydrate myself because I know I cannot access a toilet. Imagine the reaction if passengers at JFK were told they could not use the restroom until they landed in Seattle. </div>
<div class="page" title="Page 38">
<br /></div>
<div class="page" title="Page 38">
The records that airlines are now required to maintain are game changing for every person that uses a wheelchair or scooter. When I flew Southwest this month the paper work filled out for my wheelchair was different than a gate claim ticket. The gate agent asked what company manufactured my wheelchair and what model wheelchair was I using. He entered this information on the computer and asked me if I had upgraded any components. I informed him I had the carbon fiber frame upgrade as well as Spinergy wheels. I also provided him with the serial number of my wheelchair. The agent looked up and said "<i>wow, I had no idea a manual wheelchair could be so expensive"</i>. This was most definitely a first in my life. </div>
<div class="page" title="Page 38">
<br /></div>
<div class="page" title="Page 38">
There is no question I will be looking at these statistics on a monthly basis. I urge my crippled brethren to two the same. We cripples all know these statistics are grossly misleading. The airlines destroy and damage far more wheelchairs than they are acknowledging. Often the damage to wheelchairs is not immediately apparent. For a manual wheelchair user a bent or broken weld is not going to be noticed immediately. For a power chair or scooter user, damage to the controller may not be apparent. Further complicating the issue is that over the last few decades the bar has been set very low for airlines. Most people I know who fly are simply relieved their wheelchair has been returned in one piece. No one I know thinks of reporting cosmetic damage or minor damage like bent or twisted brakes. </div>
<div class="page" title="Page 38">
<br /></div>
<div class="page" title="Page 38">
On December 4, 2018 the FAA Reauthorization Act changed life for wheelchair or scooter users. I go to the airport now with empowering information. American Airlines, Southwest, Frontier, and Delta had better clean up their act. Before booking a flight, I will examine the number of wheelchairs and scooters broken by airlines the previous months. More than price, this will dictate what airline I fly. I am far from alone. Every wheelchair user that travels has heard the horror stories about wheelchairs being destroyed, broken or lost. Videos of wheelchairs being mishandled by ground personal are readily available on You Tube. Google damaged or destroyed wheelchair and airline and images of abound of mangled wheelchairs. </div>
<div class="page" title="Page 38">
<br /></div>
<div class="page" title="Page 38">
At a practical level, we wheelchair and scooter users must be proactive. If a gate agent dismisses concerns about your wheelchair being destroyed or broken provide them with statistics about the number of wheelchairs destroyed or broken the previous month. Insist the gate agent record the following information: wheelchair manufacturer, model number, serial number of the wheelchair, and upgrades on component parts. From now on I will also being taking photographs of my wheelchair moments before it is placed in the cargo hold. The Air Carrier Access Act is very clear: wheelchairs and scooter must be returned in the same condition they were received. What I am most encouraged about is the social change the FAA Reauthorization Act will prompt. If gate agents become aware of exactly how much wheelchairs and scooters cost it is my hope that will make an impression. The agent is no longer moving a wheelchair but is placing an item that cost many thousands if not tens of thousands of dollars. The people at the airport cannot be expected to know that buying a wheelchair these days is like buying a car. The stated price for a base model is misleading--upgrades can double or even triple the cost of a wheelchair. Gate agents have no knowledge that getting a wheelchair replaced can take many weeks and most likely months. When United destroyed my wheelchair it took three days to get an inferior loaner and nearly twelve weeks to get a new wheelchair. </div>
<div class="page" title="Page 38">
<br /></div>
<div class="page" title="Page 38">
Armed with information, I wonder what will happen if my wheelchair is destroyed by an airline. The major carriers such as United hire a sub contractor to arrange a replacement wheelchair if they acknowledge it is broken beyond repair. United's subcontractor, Global Recovery Network, was impressive. They were professional and did their best to provide me with a. replacement wheelchair as soon as possible. I was not impressed with the business practices of NuMotion the durable medical equipment provider tasked with placing the order and evaluation of my needs. I had to wait weeks merely to be evaluated for a new wheelchair. I then had wait more weeks before a demonstration model wheelchairs could be examined. Once selected, it took yet more weeks to receive the wheelchair selected. It is my hope that in the event an airline destroys my wheelchair a sub contractor like Global Recovery Network can provide the manufacturer with the make, model, and upgrades made to my current wheelchair and simply replace it. Durable medical equipment companies, notorious for providing horrific customer service, can be cut out of the loop. This alone would save many weeks of time and aggravation. </div>
<div class="page" title="Page 38">
<br /></div>
<div class="page" title="Page 38">
The monkey wrench in what I envision is the wheelchair user. It is far easier to cross one's fingers and hope a wheelchair is not destoryed. After all, for the naive the chances as far we know after one month of reporting is that there is a 2% chance your wheelchair or scooter will be destroyed. I sincerely doubt that most wheelchair users know the manufacturer, model and serial number of their wheelchair. I also doubt most wheelchair users will be proactive and take photographs of their wheelchair before boarding and if damaged report it immediately. The minute you leave the gate with a damaged wheelchair you are out of luck. After decades of abuse on the part of airlines, it is going to be very hard for people who use a wheelchair to assert their new rights. The last time I flew I did not think of taking photographs of my wheelchair. I only noticed a week after flying a large scratch on the foot rest. Prior to December 4, 2018 I would not have dreamed of filing a complaint over minor cosmetic damage to my wheelchair. Today, I would file a complaint immediately. The only substantive change that will take place will be driven by finances. The margin of profit in the airline industry is razor thin. In a data driven business, if the airlines note their profit margins are impacted by the cost of replacing expensive wheelchairs and scooters they will change their handling practices. That means it is incumbent upon the wheelchair and scooter user to be proactive. For the first time in my life I am hopeful that air travel will become less nerve racking and risky. </div>
william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com0tag:blogger.com,1999:blog-1556371561007953336.post-46841744752197577792019-03-11T10:31:00.003-07:002019-03-11T11:09:05.234-07:00Traveling Alone and the TSA Despite having two wounds, last week I traveled from Denver to San Diego. In traveling, I put myself at significant risk for injury. I could have, but did not, set myself back. I have been bed bound for three months, have lost weight, and a significant amount of strength. My conditioning is abysmal. I was worried about making transfers in and out of a rental car and a hotel bed that may be too high. I was also worried about the usual problems associated with traveling. Would the airline destroy my wheelchair again? Would those charged with getting me on and off the plane injure my body? Would the rental car with hand controls be present when I arrived? Would the accessible hotel room really be accessible? When one travels as a wheelchair user much can go wrong. This was in short a high risk trip.<br />
<br />
What was so important that I made such a trip? I have waited well over a year to be interviewed in person at a Canine Companions for Independence training facility for a service dog. In my estimation, CCI is the best national organization that provides service dogs to people with a wide array of disabilities. In three to four weeks I will learn if I passed inspection and will be put on the waiting list for a service dog.<br />
<br />
The trip to San Diego was uneventful. By itself this is a victory. The plane left on time. My wheelchair was not destroyed or damaged. Hertz had a nice car waiting for me. The hotel room was accessible. I did not get lost driving to the hotel and I found the CCI location with ease. The return trip was not trouble free. Indeed, the trip home was nothing short of bizarre. When traveling as a wheelchair user you cannot help but be aware the way you navigate the world is atypical. The social response to your presence is equally atypical. Ridiculous and offensive comments from fellow passengers and airport employees abound. At the San Diego airport I got more comments and ridiculous questions than usual. After I got on the shuttle bus at the terminal the driver asked a total stranger sitting near me "<i>What airline was he on and where is he going?"</i> The woman replied "<i>I have no idea where he is going or who he is".</i> The driver then looked at me and said <i>"You should not be traveling alone".</i> Annoyed at this point I replied "<i>Is that a question?" </i> He replied "<i>You should not be alone." </i>Ignoring the persistent and inappropriate question I stated simply that I was going to the Hertz office.<br />
<br />
Little did I know the question, are you traveling alone, was going to be asked repeatedly on my return trip to Denver. I was asked by every Hertz employee and bus driver if I was traveling alone. Upon arrival at the terminal I asked where the security line was located. The airline employee looked behind me and asked yet another stranger who had the misfortune of being near me "<i>Where is he going</i>?". Perplexed the stranger replied "<i>I am not with him". </i>The stranger looked at me with a bemused expression. I told her this happens all the time and she shook her head in wonder. The airport employee then asked the question I was expecting: <i>"Are you traveling alone? </i>quickly followed by<i> "You really should not be alone."</i> I ignored the question and was given directions before the employee could castigate me. At the security line I was asked by multiple airport ground employees why I was traveling alone. How did I answer this question? I politely said yes repeatedly.<br />
<br />
When it was my turn to receive the usual pat down by the TSA I was escorted to a nearby area after a short wait. This is where things got strange. The first question asked was "w<i>hy are you traveling alone</i>?" followed by "<i>do you usually travel alone?</i>" It became clear within a minute or two that traveling alone had raised some sort of alarm bell. The TSA agent was polite but was looking and interacting with me in a way that indicated he meant business. He had a job to do and the pat down was going to be by the book. Aside from traveling alone, I suspect my Roho cushion alarmed the TSA. I have been using Roho cushions for over 40 years and once in a while the air nozzle will cause the TSA to inspect me, the cushion, and wheelchair in greater detail. I am sure it did not help that my Roho cushion has two air nozzles--the typical air nozzle and the smart check remote. The TSA agent patted me down with vigor--think maximum security Federal prison. My arms, chest, back, and legs were thoroughly checked. Unsatisfied with the leg pat down the TSA agent asked if I could stand or would I permit him to manipulate my legs. I told him I cannot stand and refused to allow him to manipulate my legs for personal safety reasons. What manipulation of my legs entailed I don't know. This refusal resulted in a security call and another TSA guard came over. A discussion ensued and the second guard left. I was then asked to lift my butt off my cushion so the TSA agent could get his hand under my buttocks. I could not lift myself high enough for the TSA agent. I was then asked if I was willing to get out of my wheelchair and was I willing to have my body and wheelchair X rayed. I was asked this once before and refused--again stating that I was concerned about hurting my body during a transfer. I told the agent I was willing to do anything in the wheelchair so I could pass security. This required another phone conversation and a third TSA agent who was clearly a supervisor. I was told if I cannot lift high enough off my wheelchair so the TSA agent can feel between my buttocks and wheelchair cushion I will not be able to fly. I have no idea how much time had passed at this point but these TSA agents were being deadly serious. The threat about being refused to fly is not an idle statement.<br />
<br />
Traveling alone, having two nozzles on my cushion, and padding on the wheelchair back uprights somehow triggered the TSA. I was questioned by three TSA agents all of whom repeatedly questioned why I was traveling alone. At this point I am concerned I will be detained or refused entry to the terminal. I tell the TSA supervisor I want to cooperate and will do anything I can to pass through security. The supervisor suggests I lean over as far as humanly possible on one side of my body and cross my legs. Using a nearby metal table I do as instructed and the TSA agent forcefully feels my left buttocks and puts intense downward pressure on the Roho cushion. I attempt to do the same movement on my right side without as much success. Three TSA agents huddle and discuss the situation. My boarding pass is examined yet again, I am asked why I am traveling alone many different ways. A nearby computer is consulted. I am asked if I have traveled outside of the country in the last month. I am asked why I was in San Diego. I am asked what I do for a living, where I live, who packed my bags, if I lived alone, how did I get to the airport, what car rental company did I use, etc. A strip of material used to detect bomb making material is pressed against my hands and wheelchair. A TSA agent crawls under my wheelchair to examine the bottom and pushes me upward.<br />
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The TSA agents were exceedingly polite. I was equally polite but this was no routine pass through security. I might be completely wrong that traveling alone and having a Roho cushion with two nozzles created a serious security threat. Who knows? Maybe there was a security alert about a white middle aged male who uses a wheelchair. Common sense would indicate this is highly unlikely. I have thought long and hard about the repeated question "<i>are you traveling alone?"</i> Without question I was asked about traveling alone fifty times within an hour. Four TSA agents asked me. The bus driver asked. The airline employee giving directions to security asked. The gate agent asked. The flight attendant asked. The stranger who sat next to me on the plane asked. The person bringing my wheelchair to me upon landing asked. The gate agent in Denver as I deboarded asked.<br />
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Perhaps the entire trip home was a fluke. Never before have I had TSA search me so aggressively. Even the flight was unusual. Like in the movies, as we neared Denver a flight attendant asked if there was a doctor on board because of a medical emergency. An elderly gentleman had a heart attack a few rows behind me and all of a sudden a defibrillator and other medical equipment is taken out. A real medical crisis took place. Thankfully the man in question survived the flight and the flight crew could not have been more impressive. The plane itself came down fast and very hard in blizzard conditions. We taxied to the gate at high speed and were met by an army of EMTs. I was impressed. I also felt like the return home was a twilight zone like experience. A week later I am still shaking my head in wonder. Was the trip home a fluke? Yes, I think the trip was one of those fluky experiences that can happen to any traveler. But I am not any traveler. I am not a middle aged white biped that can saunter through security without any concerns. I am a vulnerable person subject to a TSA pat down every time I fly. I am lucky as well. What if I were a wheelchair user and black? What if I was Middle Eastern looking? There is no question in my mind I would have been detained or refused security clearance. What amazes me is how the ableist daggers and bigotry come out when I am alone. If I were traveling with someone else I would not have been targeted. The most hateful comments directed at me always take place when I am alone--usually when it is just me and a stranger nearby. Ableist bigots like to be anonymous. They are sneaky when expressing their disdain for my existence. Were the TSA agents being ableist? I have no idea but I sure felt like I committed a crime for traveling alone. william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com5tag:blogger.com,1999:blog-1556371561007953336.post-73797231731793015292019-01-23T13:32:00.001-08:002019-01-23T13:32:19.989-08:00Unwanted "Help" and the Dangers of Ableism<span style="font-family: Arial, Helvetica, sans-serif;">A few days ago I read a tweet written by Bronwyn Berg that deeply resonated with me and many others with a disability who use a wheelchair. Berg tweeted:</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><i><span style="background-color: white; color: #1c2022; white-space: pre-wrap;">If you see a person in a wheelchair (especially a woman) being pushed by someone and she’s screaming Stop! No! Help! For the love of humanity help her!</span><span style="color: #1c2022; font-family: Helvetica, Roboto, Segoe UI, Calibri, sans-serif;"><span style="caret-color: rgb(28, 32, 34); white-space: pre-wrap;"><br style="color: #1c2022; white-space: pre-wrap;" /></span></span></i><span style="background-color: white; color: #1c2022; white-space: pre-wrap;"><i>A guy grabbed my wheelchair today and just started pushing me, not a single passerby helped even though I was screaming for help</i>.</span></span><br />
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<span style="background-color: white; color: #1c2022; white-space: pre-wrap;">The sudden unexpected "help" pushing a wheelchair presents the most dangerous social experience I endure on a regular basis. I have never understood this sort of unwanted "help". I cannot imagine the level of arrogance coupled with ignorance required to impose "help". In my estimation imposed "help" is an assertion of </span><span style="color: #1c2022; font-family: Helvetica, Roboto, Segoe UI, Calibri, sans-serif;"><span style="white-space: pre-wrap;"><span style="white-space: pre-wrap;">social superiority and perceived physical dominance. When a stranger suddenly starts pushing my wheelchair I know the social interaction is going to go badly the second I refuse "help". Unwanted "help" when refused politely or firmly instantly changes the social dynamic. The results are predictable: "help" instantly turns to anger and either verbal or physical assault. The only analogy I can think of is a uniformed police officer who pulls a car over for a routine traffic violation that suddenly and unexpectedly turns from into a life and death struggle with another person. While I have never feared for my life, when unsolicited "help" is imposed I am instantly wary and become acutely aware of my surroundings. I know without a doubt I am on my own--just like Berg experienced. Bystanders are useless. What I look for is an out--my total focus is to get away from the person imposing "help". No matter what transpires when "help" is refused I know danger is at hand. A few example of imposed "help" should suffice:</span></span></span></span><br />
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<span style="color: #1c2022; font-family: Helvetica, Roboto, Segoe UI, Calibri, sans-serif;"><span style="white-space: pre-wrap;"><span style="white-space: pre-wrap;">Washington Dulles airport late at night. I am killing time before my flight and on my way to the bathroom. I have my brief case on my lap as I am heading up a slight incline. Suddenly I feel two hands on my back pushing hard. I almost drop my brief case and fall out of my wheelchair face forward. For balance and to stop, I grab onto one wheel and turn around to face the person imposing "help". The beneficent smile turns to rage when the person can no longer push me forward. Suddenly I am the problem. In this instance I was told to shut up and be grateful for the push. When I refused I was loudly told people like me are bitter and angry. A stand off ensues while others silently look on. No support is offered. The person storms off to accolades from others. </span></span></span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #1c2022; font-family: Helvetica, Roboto, Segoe UI, Calibri, sans-serif;"><span style="white-space: pre-wrap;"><br /></span></span>
<span style="color: #1c2022; font-family: Helvetica, Roboto, Segoe UI, Calibri, sans-serif;"><span style="white-space: pre-wrap;">Heading into a store on a strip mall. I have the door half open when suddenly a man reaches over my head while stepping in front of me. Using the door to support my front torso, I almost fall while the man cheerfully says "l<i>et me get that door</i>". He is standing in the doorway and I am backing away. When I politely say <i>"I don't need help</i>" his face turns fire engine red and he screams "<i>I hate you bitter cripples. I was trying to be nice but no, you just shit on everything"</i>. With his diatribe over he slams the door in my face.</span></span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #1c2022; font-family: Helvetica, Roboto, Segoe UI, Calibri, sans-serif;"><span style="white-space: pre-wrap;"><br /></span></span>
<span style="color: #1c2022; font-family: Helvetica, Roboto, Segoe UI, Calibri, sans-serif;"><span style="white-space: pre-wrap;">Last fall walking to the light rail station. I am going up a long hill when I hear a car screech to a </span><span style="caret-color: rgb(28, 32, 34); white-space: pre-wrap;">halt. A woman jumps out of the car into traffic and runs full speed towards me. She is yelling <i>"I will push you! Where is your care taker? You cannot be alone</i>." We enter into a strange dance as she tries to get behind me while telling me "<i>I will push you</i>". After a few minutes she leaves muttering about what an ass hole I am.</span></span></span><br />
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<span style="color: #1c2022; font-family: Helvetica, Roboto, Segoe UI, Calibri, sans-serif;"><span style="caret-color: rgb(28, 32, 34); white-space: pre-wrap;">Downtown Denver 16th street mall. A homeless man or person with a significant mental illness stalks me for eight blocks. The streets are crowded and there is a police presence. At a red light the person in question sneaks up behind me and starts pushing me into traffic against the light. I grab one wheel and turn to confront him and loudly say no. Heads turn and tow strangers in unison say "<i>give the guy a break, he is only trying to help you</i>". No I reply "<i>he is trying to extort me and asking for $10 to push me</i>". Afraid for my safety, I walk over to nearby cops who tell me to get lost and be kind to others who are helping me. </span></span></span><br />
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<span style="color: #1c2022; font-family: Helvetica, Roboto, Segoe UI, Calibri, sans-serif;"><span style="caret-color: rgb(28, 32, 34); white-space: pre-wrap;">Getting into my car at a gas station. A stranger runs around my car and pulls the wheelchair away from me. "<i>I will help you. Where are the wheels and how do I put them on</i>". Essentially I enter into a tug of war over my wheelchair frame while being told what an ungrateful jerk I am.</span></span></span><br />
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<span style="color: #1c2022; font-family: Arial, Helvetica, sans-serif; white-space: pre-wrap;">Every wheelchair user I know dreads the sort of imposed "help" described above. This is why Bronwyn Berg's tweet resonated and in a day had 65,000 likes and 20,000 retweets. I tweeted my reply to Berg and the tweet response was picked up by the BBC and CBC news. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #1c2022; font-family: Helvetica, Roboto, Segoe UI, Calibri, sans-serif;"><span style="white-space: pre-wrap;"><br /></span></span>
<span style="color: #1c2022; font-family: Helvetica, Roboto, Segoe UI, Calibri, sans-serif;"><span style="white-space: pre-wrap;">Link: <a href="https://www.bbc.com/news/blogs-trending-46862035">https://www.bbc.com/news/blogs-trending-46862035</a></span></span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #1c2022; font-family: Helvetica, Roboto, Segoe UI, Calibri, sans-serif;"><span style="white-space: pre-wrap;"><br /></span></span>
<span style="color: #1c2022; font-family: Helvetica, Roboto, Segoe UI, Calibri, sans-serif;"><span style="white-space: pre-wrap;">Link: <a href="https://www.cbc.ca/news/canada/british-columbia/a-wheelchair-user-s-guide-to-consent-1.4982862">https://www.cbc.ca/news/canada/british-columbia/a-wheelchair-user-s-guide-to-consent-1.4982862</a></span></span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #1c2022; font-family: Helvetica, Roboto, Segoe UI, Calibri, sans-serif;"><span style="white-space: pre-wrap;"><br /></span></span>
<span style="color: #1c2022; font-family: Helvetica, Roboto, Segoe UI, Calibri, sans-serif;"><span style="white-space: pre-wrap;"><span style="white-space: pre-wrap;">I cannot truly express how demeaning and frightening unwanted "help" is. In disability rights and disability studies scholarship I often hear and read that we should always assume competence. For me it is less about competence than it is about human adaptation at its best. Regardless of the disability, we humans adapt like no other animal. I think adaptation every time I see a blind person teamed with a guide dog. I see adaptation when I see a blind person using a cane. I see adaptation when I observe deaf people conversing via ASL and am jealous of Deaf culture. When I see a quadriplegic moving fast in a power chair I think adaptation. When I see a wheelchair user and a service dog working in unison I think adaptation. Typical bipeds </span></span><span style="caret-color: rgb(28, 32, 34); white-space: pre-wrap;">do not see what I do. They usually see nothing more than a physical deficit, an inferior human being in need of help. They see and think tragedy. The fact help is not required never enters the equation. The fact a person with a disability can lead a </span></span></span><span style="color: #1c2022; font-family: Arial, Helvetica, sans-serif;"><span style="caret-color: rgb(28, 32, 34); white-space: pre-wrap;">rich and full life is dismissed as impossible or inspiring.</span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #1c2022; font-family: Helvetica, Roboto, Segoe UI, Calibri, sans-serif;"><span style="caret-color: rgb(28, 32, 34); white-space: pre-wrap;"><br /></span></span><span style="color: #1c2022; font-family: Helvetica, Roboto, Segoe UI, Calibri, sans-serif;"><span style="caret-color: rgb(28, 32, 34); white-space: pre-wrap;">Today social media has given people with a disability the means to vent and connect in real time with others. I am sure Berg was gratified to know her experience was far from unique. Like Berg, I have no interest in what others who impose "help" intentions are. As Berg noted in the essays linked above, this misses the point. "<i>The point is never, ever touch a wheelchair without asking</i>". Aside from the risk of injury, the fundamental issue is consent and bodily autonomy. Berg stated "</span></span><span style="caret-color: rgb(34, 34, 34); color: #222222; font-family: "Open Sans", sans-serif; font-size: 16px;"><i>Our assistive devices are a part of our body. We aren't furniture that can be moved around.</i>" And that is exactly how we wheelchair users are perceived by others--a piece of furniture that is routinely in the way. The human being using a wheelchair is not respected. Like </span></span><span style="color: #222222; font-family: Arial, Helvetica, sans-serif;">Berg, these incidents are deeply unsettling. In fact a few days after her confrontation Berg tweeted: </span><br />
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<span style="background-color: white; caret-color: rgb(20, 23, 26); color: #14171a; font-family: "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><i>I keep having nightmares that someone is chasing me and I’m wheeling as fast as I can. I keep trying to hide in accessible washrooms, but something prevents me. In one dream the door was too heavy, in another it was occupied by a non-disabled person.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="caret-color: rgb(34, 34, 34); color: #222222; font-family: "Open Sans", sans-serif; font-size: 16px;"><br /></span><span style="color: #222222; font-family: Open Sans, sans-serif;">Berg was assaulted at two levels: first, she did not receiving support from others when she yelled out. Second, Berg felt very much alone and invisible. The fact is disability based harassment and disability hate crimes are not taken seriously. There is a cultural fiction that everyone is kind to the handicapped--my brother actually said this to me once. No. Just no. People are not kind to the handicapped. Read any text on the history of disability and you will discover a long legacy of human rights violations that are the stuff of nightmares. Think Willowbrook Institution or the Ugly Laws or forced sterilization or growth attenuation. While the law may be on the side of people with a disability in this country, women with a disability are a minority within a minority and are at a greater risk for violence. Women with a disability for instance are twice as likely than non disabled women to be the victim of a violent crime. Women with a disability are also more likely to be sexually assaulted. No doubt Berg knows this all too well. </span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #222222; font-family: Open Sans, sans-serif;"><br /></span><span style="color: #222222; font-family: Open Sans, sans-serif;">Imposed "help" transcends borders. Imposed "help" takes place in Canada, America, England, and as far as I know most industrialized nation states. As a wheelchair user, I remain wary of others. When in public I am never truly relaxed. My guard is always up no matter where I am. I am all too well aware I live in a hostile social environment that is not constructed with me in mind. When imposed "help" rears its ugly head I am reminded ableism is rampant and dangerous. If you do not believe me ask Bronwyn Berg. Indeed, she is the expert and I hope she does her level best to undermine imposed "help". </span></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #222222; font-family: Open Sans, sans-serif;"><br /></span></span>william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com4tag:blogger.com,1999:blog-1556371561007953336.post-43828005771255765552019-01-15T14:54:00.003-08:002019-01-15T14:54:50.305-08:00Wheelchair Update: Apex at One Year OldMy wheelchair turned one year old this month. It has been an interesting year adapting to my wheelchair. Initially, I was worried of falling. I felt seriously tippy and unstable. I now understand why so many wheelchair users have anti tippers attached to the frame. However, I am way too old school to use anti tippers. In my experience anti tippers get in the way when going up and down curbs and prevent one from popping a wheelie. Writing this makes me feel old as I wonder if these necessary skills are still taught at rehabilitation hospitals. Based on my observation of newly minted paralyzed guys I see I doubt it (in Denver it is easy to spot such rookies in part because Craig Hospital has a dominant presence). In the absence of anti tippers I simply learned front, rear, and side balancing points. I have almost fallen many times and can now feel when I am at a point of no return.<br />
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Learning ones tipping point comes with some risk. I took a heavy fall two months ago. After I fell I was distressed to learn that I cannot get from the floor back into my wheelchair independently. The 85 degree angled front frame on my new wheelchair is a far cry from the shallow or longer 60 degree angle of my old wheelchair. At 60 degrees I had more options for leveraging myself up. Getting from the floor to the wheelchair was once something I did with ease but over the last decade this has gotten much more difficult. My goal this spring is to work on regaining this essential skill.<br />
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On a regular basis I get email from people asking about my new wheelchair. I understand why people reach out. Wheelchairs are incredibly expensive, take weeks, and more likely, months to be manufactured. Sales are typically final--virtually no new wheelchair can be returned. Worse yet, wheelchair evaluation clinics are ethically compromised by exclusive contracts with a limited number of manufacturers and durable medical equipment outlets. This does not even address the long waits for a wheelchair seating evaluation. The result is objective non biased information is exceedingly difficult to come by. Good luck trying to find wheelchair reviews online you can trust. They simply do not exist or are quite antiquated--think many years old. I tell people that my Apex wheelchair with the expensive carbon fiber frame upgrade is well worth the money. The same can be said for upgrading the rear wheels. I upgraded to 24x1 Spinergy Spox rear wheels. In my opinion, Spinergy currently makes the best wheelchair wheels and wheel accessories on the market. I also learned there is a world of tires that now exist. And yes those tires are expensive and another upgrade. Via Motion Composites, I upgraded the front wheels to Newton wheels as well. To these upgrades I added clothing guards, and scissor brakes. In essence do not be fooled by the advertised sticker price of any wheelchair. By the time one is done upgrading various components, and believe me those upgrades are a must, the price of a wheelchair can easily reach dizzying heights way beyond the listed price. The upgrades I added ended up in the thousands of dollars.<br />
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Overall, I could not be happier with my new wheelchair. One huge variable remains unknown--how will the carbon fiber frame hold up over time. This is what makes the Apex and any other carbon fiber frame wheelchair a real wild card. If the frame cracks or fails theoretically it can be repaired but that would take a long time. I also have no faith the warranty would honored by Motion Composites. This is not a knock on Motion Composites but the wheelchair industry in general. The warranty on any wheelchair in my experience is worthless. A reason is always found to not honor the warranty. If you doubt peruse back to my posts about the owners manual that came with my wheelchair.<br />
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In terms of wear and tear, I have had two minor issues. First, the upholstery the wheelchair came with lasted a mere four months. That is an unacceptable lifetime. I let the Motion Composites Colorado sales representative know and he was kind enough to send me a new set of upholstery at no charge. Second, a bearing in the front wheel fell apart when I was cleaning hair out of the front axle. Again, I contacted the sales representative and he kindly sent me a set of bearings. Any wheelchair user knows that the front wheels take a beating and hair destroys bearings over time. Hence I remove the front wheels every Sunday and lubricate the bearings in the hope I will extend the wheels operational life. This is not a time consuming task. I do have some concern about bearings in general. Years ago I expected bearings to last a long time. Today I have no such expectations. I plan to replace all the bearings on a yearly basis. I grumble about this as I consider a year life span unacceptable. However we are talking about a $15 part that is easily replaceable.<br />
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The main difference between my old wheelchair and my new wheelchair or any contemporary manual wheelchair is philosophical. My old wheelchair was designed to last a lifetime. The frame served me well for nearly 40 years. It was exceptionally hard to work on but was virtually indestructible and rarely failed. In contrast, modern wheelchairs, mine included, are technologically advanced but require constant attention. Aside from removing the front wheels every Sunday, I thoroughly clean the entire wheelchair and check every single component. In short, my wheelchair is treated like a Ferrari. It is spotlessly clean and nothing is left to chance. New wheelchair enthusiasm it seems lasts far longer than one year.<br />
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I cannot imagine owning my wheelchair without having a bevy of expensive spare parts. Over the last few months I have ordered many bearings, brakes, forks, foot rest, hardware, and wheels in case of a malfunction. The sales representative for Motion Composites has been outstanding and responsive. For this reason alone, I highly recommend my wheelchair. This sort of responsiveness is exceedingly rare in the wheelchair industry. Perhaps I am lucky as the sole sales representative in Colorado is great. The sales representative in other states could be terrible. This would surprise me but you never know. If you own a Tlite or Panthera wheelchair good luck getting a sales representative reply to an email. As for parts, my guess is getting any part for a Panthera would take months because they have virtually no presence in North America. This says nothing of the cost which would be exceedingly expensive. Tlite parts are more readily available given they dominate the wheelchair industry in the USA but I find it painful to deal with such a large corporation. It certainly does not help that I find the Tlite to be an inferior product. It is akin to a Lego toy to me--too many cheaply made short lived component parts. Most people I know struggle to get five years of serviceable life out of the wheelchair under rigorous use.<br />
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What my wheelchair cannot do is handle a harsh Northeastern winter. If I lived in the snow belt of New York my wheelchair with narrow rear wheels and small front wheels would be useless in deep snow. I also wonder how it would handle bone chilling cold. Here in Denver we get a few days of frigid temperatures but nothing like New York or Vermont sub zero temperatures. I miss those frigid days as I could feel the steel frame of my wheelchair groan when I walked my beloved labrador Kate. The carbon fiber frame I have now does not react to the cold. The frame seems impervious to extremes cold and heat. This is quite odd to me as the only part of my wheelchair that feels cold are the aluminum hand rims. Surprising to me is the fact my wheelchair handles deep puddles, really wet weather, and slush quite well. Last week I was outside in a heavy wet snow that left large amounts of slush at curb cuts and with little effort I powered up and down without any trouble. Another environmental variable I had never given much thought to is wind. Given how light the wheelchair is, if I get a strong gust of wind behind me, say 30 to 40mph, I am going to be able to fly. Of course, heading into the wind is going be an entirely different story.<br />
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In an urban environment, my Apex wheelchair is at its best. I can literally fly through airport terminals and bus depots. The effort required to push is minimal. Sitting in a perfectly fitted wheelchair can be a real joy. I tend to move far faster than most bipeds and often enjoy weaving throw crowded Denver city streets. The wheelchair is not as adept on rougher terrain. This is more a statement only relative inexperience with my wheelchair than a design flaw. I am extremely wary of falling over backwards hence am hesitant to put all my weight on the rear wheels. As every day passes I become more comfortable this becomes less of concern. Thus over time going on rougher dirt trails will become less of an issue. The issue now is the wheelchair operator and not the wheelchair itself.<br />
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Beyond my wheelchair, the foremost problem as I see it beyond the prohibitive cost of wheelchairs is finding the right wheelchair and above all else the right fit. I see people every day in ill fitting inappropriate wheelchairs. This breaks my heart. Nothing is wore than sitting in a wheelchair that is ill-fitting. By the end of the day one will be sore and likely in pain. One should enjoy using a wheelchair--this is only possible if you have the right wheelchair in the appropriate size and configuration. This is not as easy as it sounds. It has taken me 40 years to adapt and that adaptation process never stops.<br />
<br />william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com0tag:blogger.com,1999:blog-1556371561007953336.post-25986829745772553972018-12-14T16:49:00.001-08:002018-12-14T16:49:56.337-08:00In Search of Empathy<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Times; font-size: 16px; font-stretch: normal; line-height: normal;">
<span style="font-kerning: none;">Wound care appointments create significant angst. News tends to fall into two categories--good or bad. This week the news was good. My wound is healing. Relieving pressure, i.e. not sitting, is without question a successful method of physically healing a wound. Physically healing a wound however involves much more than one's skin and underlying tissue. The mental toll pressure relief takes is devastating. Depression is a natural response to being socially isolated and bed bound. Depression leads to disrupted sleep patterns, loss of appetite, and for me, jags of tears when alone. Being bed bound leads to a loss of strength and physical fitness. Surely these areas of concern should be of paramount importance to health care professionals in wound care. This is simply not the case and I find this deeply objectionable. No wound care program has ever addressed these issues in my experience. I was forcibly reminded of this fact yet again. I stated briefly and clearly to the wound care doctor that I was depressed. Indeed, I stated I was clinically depressed. The wound care nurse who had my electronic chart open checked off the box "depressed". That was the end of the conversation. No referral for mental health care was made. Such a referral must come from an internist. The physician knows I have no internist. An awkward silence ensued. I got the message. Depression, loss of appetite, hydration, physical fitness, and strength are beyond wound care's realm of expertise.</span></div>
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<span style="font-kerning: none;">Wound care focus on a wound in a social vacuum is and always has been a shocking failure to me. I have had far too many wounds in the last 40 years. In that time wound care dressings and treatment have evolved and advanced but the lack of empathy displayed on the part of wound care professionals is heart breaking and dare I say deadly. Driving home from my appointment I thought long and hard about a remarkable essay I read by Joel Reynolds in the AMA Journal of Ethics. In "Three Things Clinicians Should Know About Disability" Reynolds outlined a set of responsibilities health care professionals should uphold and made three concrete recommendations for clinicians to institute when dealing with patients who have a disability. I found Reynolds words insightful and incredibly helpful. He did not lash out as I have against ableism. He did however write about rampant ableism in health care and drew heavily on decades of work produced by disability studies scholars and philosophers. The mere fact his essay appeared in an AMA journal is a testament to the progress made by disability studies scholars in the broadest sense of the term. This is heartening in the extreme. Yet this progress has not filtered into clinical practice. People with a disability are routinely treated badly by health care professionals--just two weeks ago I was continually referred by staff in radiology as"wheelchair". Bigotry and profiling are alive and well in institutions nation wide.</span></div>
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<span style="font-kerning: none;">Reynolds maintains health care professionals, when dealing with people who have a disability, should be aware of the following:</span></div>
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<span style="font-kerning: none;">1. Quality of life. Health care professionals, like much of the general public, assume the quality of life for people with a disability is poor. Study after study has amply proven this assumption is incorrect yet this myth is commonplace. </span></div>
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<span style="font-kerning: none;">2. The problem of ableism. Health care professionals see the normal or typical body as the ideal. They assume all people want to function and appear to be normal. Any evidence to the contrary is suspect. Thus a patient with a disability who is content with an atypical body calls assumed beliefs into question and is thus a threat to well established practices. The assumption made is that all humans desire the ability to walk, see, and hear. </span></div>
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<span style="font-kerning: none;">3. Distinction between disability and illness/disease. Because ableism is rampant many health professionals confuse disability and disease as being one in the same. This is wrong and leads to gross miscommunication and erroneous conclusions. </span></div>
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<span style="font-kerning: none;">Building off this knowledge base Reynolds argues health care professionals need to adopt a holistic view of disability and treat patients who happen to have a disability differently. He suggests the following:</span></div>
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<span style="font-kerning: none;">1. Clinicians have a responsibility to develop disability humility.</span></div>
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<span style="font-kerning: none;">2. Clinicians have responsibilities to communicate better with and about patients with disabilities.</span></div>
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<span style="font-kerning: none;">3. Clinicians have responsibilities to recognize the authority of people with disabilities as experts about their own lives and communities and to elevate their voices. </span></div>
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<span style="font-kerning: none;">Based on my experience with wound care professionals, they fail miserably on all three of Reynold's suggestions. When accessing health care I communicate in a clear and direct manner yet virtually no health care professionals listen or make an effort to understand disability and the degree to which institutions are physically inaccessible and hostile to disabled people. I have not met any clinicians who acknowledge much less respect the fact I have managed to avoid most secondary complications associated with paralysis for over four decades. What clinicians see first and foremost is pathology. They seem unable or unwilling to listen and I suspect are fearful of complex patients. Complex here means a disabled body that requires atypical care, a different approach to health care, and a level of respect or agency not usually given to a patient.</span></div>
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<span style="font-kerning: none;">Reynolds notion of disability humility is fascinating because it has the potential to fundamentally change the way health care providers perceive disability. If disability has taught me anything it is humility and with that humility comes wisdom or a different way of knowing. From the Latin, the word humilis, means low, and we wheelchair users are low in comparison to bipeds and low in social standing. As a group we are poor, too often receive an inadequate education, are unemployed in large numbers, and within the health care professions our presence is rare if not entirely absent. These grim facts remain largely unknown because health care professionals are not exposed to disability studies and disability history. At best health care workers are required to know what the medical model and social model of disability is. Like the checked box, depression, on my chart in wound care, health care workers know nothing about disability beyond the fact two models exist. Reynolds pointed out this lack of knowledge which led Hastings Center scholar Erik Parens to suggest a "binocular" view of disability--a view that fuses both the medical and social understanding of disability. Imagine if wound care professionals who correctly advise a person such as myself relieve all pressure and not sit up for more than an hour a day were forced to live their medical advice? I am not suggesting we return to the terrible disability simulations that were once popular. What I am suggesting is having health care professionals experience a dose of disability humility. Perhaps if this happened they would see more than a wound. </span></div>
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<span style="font-kerning: none;">As I imagine it, disability humility could revolutionize health care outcomes for people with a disability. Memoirs written by people with a disability have poignantly described the battleground and inhospitable social and physical environment of hospitals across this nation. It is well past time for fundamental change. Imagine a wound care department that practiced disability humility. Rigorous support beyond the wound itself would exist. Pressure relief would remain the go to treatment but that would be accompanied by robust social and medical support. An online support group would be automatically joined upon diagnosis. An in home evaluation would be made by a nutritionist who would arrange meals that could be made quickly. A wound care nurse would help with dressings as needed. And this nurse would know the cost of dressings and inexpensive options. A Physical and Occupational therapist would do an evaluation and recommend exercises as needed. A mental health specialist would be made available at all wound care appointments and if necessary arrange home visits. </span></div>
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<span style="font-kerning: none;">I am aware the above sounds idealistic and expensive. I would suggest a single additional staffer be added to wound care--a wound navigator if you will. This person would do the required coordination of specialists mentioned above. They would become the point person for patients to speak with. This holistic approach is all too rare in Western medical care. I am sure a hospital coordinator reading the above is either laughing at my idealism or questioning who will pay for all this. I would suggest what I outline would in the long run save a small fortune and dramatically reduce the time it takes to heal wounds. Patients from diagnosis to being healed would have an optimum diet, fitness, mental health and other social supports. No inappropriate dressings would be used to save money. Patients would return to work faster and require less time in a prone position. All involved would benefit. Wound care professionals would see their excellent medical advice complied with. Patients would not experience extreme isolation and have healing time reduced. With disrupted sleep patterns this is now what I think about at 3AM.</span></div>
william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com2tag:blogger.com,1999:blog-1556371561007953336.post-69347740983314369672018-12-07T12:59:00.000-08:002018-12-07T12:59:06.991-08:00Thank YouThe response to my last post, The Abyss, was nothing short of stunning. Dozens of people reached out to me. I received a remarkable number of emails, comments sent to my blog, Facebook messages, texts, and phone calls. The expression of concern on the part of so many was humbling. I have not as yet responded to all who contacted me but I will do so shortly. To say I was deeply touched would be an incredible understatement. I was in fact moved to tears many times. Aside from the touching words, I was taken aback by the number of people who implored me to keep writing and fighting against ableism and social injustice people with a disability routinely experience. More than a few people took me to task too. Some believed my words reflected self pity and depression. To this charge I plead guilty. At 3AM I was feeling pitiful. I was and remain depressed. The words of appreciation and tough love have made me realize I have to live up to my own words and deeds thus I will continue to blog and fight for what I believe is important--the equal rights of people with a disability. <br />
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Since I wrote The Abyss a few things have become clear. An MRI revealed my wound has not spread to my bone. The wound is not life threatening at this time. This is excellent news. The not so good news is that I must severely restrict the amount of time I sit up. I do my level best not to sit up for more than 100 minutes in total a day. I limit my transfers as much as possible. I lay supine almost all day and night. I find this nothing short of torturous mentally and physically. The social isolation I am experiencing is severe. The depression I am experiencing is equally severe. Solutions are obvious for my physical recovery. Stay off my wound and remain free of pressure. This is solid medical advice. Such a course of action has worked in the past and will likely work again. The problem with this medical plan of action (really the lack of any action) is the social context. And here is where I think wound care departments nationwide fail their patients.<br />
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Wound care physicians are superb at caring for wounds such as mine. The physical component of healing a wound can be tricky and requires creativity and out of the box thinking. Hence wound care professionals are up to date with the latest products and are truly dedicated to healing people with severe wounds. However, all wound care departments fail miserably in three ways. First, pain management. In my experience physicians ask about pain on the initial consult but never seriously address the issue. I have been told repeatedly that as a paralyzed man I am not in need of pain medication. Again and again I have been told, with relief, that if you are paralyzed you cannot experience pain. This is simply wrong. I do experience pain. Though far from typical pain, I nonetheless feel when a dressing is changed. This an exhausting experience and hours later I feel significant pain for hours on end. No wound care doctor or health care professional has ever engaged in a discussion about the pain I experience. I can only assume I am expected to suck it up and be silent and compliant.<br />
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The second failure of wound care is the complete lack of attention paid to one's diet and exercise. Wound care doctors advise people such as myself to eat a diet high in protein. Good advice for sure. But if I am severely limiting my sitting time how do I make high protein meals quickly? I need to make, consume, and clean up my meal in 15 minutes or less. Even boxed meals such as Blue Apron advertise cook and prep times of 30 minutes. I do not have that much time sit up. I am lucky however. I have the social support of others who do food shopping for me. Exactly, what are others more socially isolated supposed to do? I have also been advised to be well hydrated. Again, good advice however this will require multiple transfers throughout the day. Those transfers are supposed to be limited. Thus eating and drinking, key components to healing, place me in a Catch 22 situation. No matter what I do I am wrong. None of this begins to address the loss of muscle mass and fitness. No physical therapy consult is arranged and any mention of fitness is met with a stoney silence or simple I don't know.<br />
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The third and biggest failure of wound care is the utter disregard to mental health. There is no question I am experiencing situational depression. I am bed bound and have been told to be pressure free and limit transfers. In other words I am house bound and bed bound. I cannot leave my home. I must spend 99% of my day in bed. How exactly can I not be depressed? This sort of social isolation would be deemed cruel and unusual punishment if I were convicted of a crime and sent to a prison. No wound care program, addresses mental health. No wound care program has an online or real life support group. No wound care programs work with mental health professionals, make such referrals or provide in home support. People such as myself are left alone and must fend for themselves for months on end. The social isolation associated with disability is magnified greatly when bed bound. Days are long and writing and basic functioning is difficult in the extreme. Healing a wound is thus crushing to one's sense of self and psyche. And I am lucky as an academic. I can work from my bed and this is highly unusual. People with a typical 9 to 5 job are screwed.<br />
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The lack of attention to mental health, in my case depression, directly impacts my ability heal. My limited sitting prevents me from making a meal enjoyable to eat and my depressed state makes me not want to eat at all. After my last appointment at wound care I was so depressed and traumatized I did not eat for three days. Why do wound care departments ignore such a vital issue? I can only assume they believe my life and others they see has less value. Surely I have no career or family or social obligations. Being forced to cancel all plans for weeks and months to come means nothing to wound care. They see a wound. I see my life put on hold. I see a bleak future.<br />
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Complicating the above, is the fact the only time I do get out is for medical treatment. As most people will tell you, accessing health care for people with a disability is deeply problematic. For instance, the MRI I had last week surely did not help my wound or mental state. Hospitals are grossly inaccessible and hostile social environments. At the hospital staffers in radiology referred to me repeatedly as "wheelchair". When I asked where my wheelchair would be secured during the MRI I was told the hallway. When I expressed serious concern, especially about possible theft, my worries were dismissed. When I persisted I was told it did not matter; if my wheelchair was stolen the hospital was liable and would replace it. Another staffer over hearing this conversation chimed in she understood my concern because someone stole her bike recently. Yes my wheelchair and a bike are equivalent. It did not take me more than minutes to realize there was absolutely no accommodation for disability. Rigid and inflexible protocol was mindlessly followed. My different body and needs were an inconvenience to staff. None of this addresses the fact there was no place to sit in the waiting room. The lowered desk area at check in was filled with useless promotional material. I was also given a yellow hospital ID and automatically deemed a fall risk. No one asked when I had last fallen. All this took place at one of the best hospitals in the state of Colorado.<br />
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I believe wound care departments are not meeting the physical and emotional needs of their patients. It is my hope wound care professionals will take the time to see more than a wound. They need to address all the variables that go into healing a wound from start to finish. This will require a very different and far more proactive approach. Far more people need to be involved. Nutritionists, mental health professionals, physical and occupational therapy, peer support, home visits and much more. With all seriousness, lives are at stake. I am nowhere near healed and struggling mightily. Wound care is utterly clueless because they have not asked or simply dismissed or ignored my concerns. This is in no way a knock on the wound care professionals overseeing my care. This is an indictment on every wound care program in the nation. The wound care professionals I see are just doing their job and that is the problem.william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com13tag:blogger.com,1999:blog-1556371561007953336.post-52637256003873392772018-11-28T03:36:00.000-08:002018-11-28T03:36:04.518-08:00The AbyssI have not posted at Bad Cripple in a long time. This labor of love has likely come to an end. It is 4am here in Denver. I am deeply depressed. Worse, I do not care. For 40 years I have been passionate about disability rights and scholarship. Both fields have passed me by and left me in the dust. I have no work. I have no prospects of work. I have no place in disability rights. In this dark night I am ready to slip into an abyss.<br />
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Yesterday I was at wound care. A relatively minor wound has blossomed into a deep and potentially life threatening wound. I knew, indeed I have always known, one of these wounds would kill me. I am not critically ill yet. It is possible I will recover. The road for me however is going to be long and painful. My quality of life is absent. I cannot sit. I cannot go out. I cancelled all plans for six months. I have nothing to look forward to. My day is spent on the phone, mostly on hold, with bored disinterested people who work for a health insurance company. They inform me why nothing is covered. The hospital I visit subsequently sends the bill to bill collectors who call me me all day long demanding payment. The physician I see provides solid medical advice. But like all wound care physicians ignored are the realities of life. Pain is never addressed. Depression and mental health are not discussed. Cost of dressings is not addressed.<br />
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For 40 plus years I have banged my head against the wall and demanded to be a treated with respect. This has been largely fruitless and yielded insignificant results. Academic professional organizations remain openly hostile to disabled scholars. My fancy Ivy League credentials got me nowhere. As I sit here in bed in the dark typing into my phone I am faced with the realization my life has been an utter failure. This breaks my heart. I wanted to make a difference in the world.<br />
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I have no idea if I will post here again. I do know I will not leave this apartment for at least two weeks. Under the best of circumstances it will be months before I can sit up. The worst case scenario is a clinical cascade that will slowly and methodically end my life. Most dangerously I am okay with that. Yes, I feel that defeated. We live in a draconian world where health care is for the well insured and abled population. My crippled ass need not apply. Social supports are largely non existent. I am what I am--a drain on limited economic and social resources in a capitalistic society driven to win and profit. About the best thing I can say is that I really tried. I tried to be a good man, a good father, a good son to my parents, a good writer, teacher and scholar. I had various shades of success and failure. For now it is time to withdraw from society and others. What the future holds here and in life remains unknown. It is thus with a heavy heart I say goodbye to those who cared enough to read my many posts over the years.william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com17tag:blogger.com,1999:blog-1556371561007953336.post-31415088604808177532018-09-13T15:20:00.003-07:002018-09-13T15:20:59.609-07:00On ToiletingDecades ago the leading cause of death among paralyzed people were complications associated with the bladder, kidneys, and urinary tract system. Today, the most common cause of death among those who have survived for decades with a cord injury is cardiovascular disease. I have sent much of the last year reading various medical journals about why people with a spinal cord injury die of heart disease. There is no agreed upon variable. When compared to the typical population risk factors are significantly higher for physical inactivity, obesity, blood pressure irregularities, chronic inflammation, abnormal glycemic control, and strokes. The statistics associated with heart disease and paralysis are grim. Yet no definitive study has as of yet emerged as to why people living with paralysis are at such high risk for cardiovascular disease. A few obvious factors come into play--for example the higher the level of injury the higher at risk one is for a stroke or heart disease. Another variable often mentioned is chronic, as in decades long, dehydration. For much of the last 45 years, I have dehydrated myself on a regular basis. Accessible bathrooms may be more common now but that was certainly not the case when I was younger. I severely dehydrated myself on a regular basis when I taught, got on an airplane, went out to dinner, or went on a long drive. I did so because I knew accessing a bathroom was going to be difficult or impossible. For much of my life, I have done some rather vigorous pee math. It was not unusual for me to drink less than 30 ounces of fluids a day. Some days, I would not drink at all. For instance, if I were going to be on a long flight, an extended day where I knew no bathrooms were accessible I would stop drinking fluid the night before. The concept of being well hydrated was a mystery. The world was not accessible and to work in an often hostile physical and social environment involved routine dehydration. That was just my life.<br />
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Fast forward 40 years, and I am paying the price of being dehydrated daily for decades. I no longer dehydrate myself. If I do so I feel physically sick. I get severe headaches and my heart feels funny--as in out of rhythm or arrhythmic. I avoid caffeine--it has a profound impact on my heart. One cup of coffee or tea will send my heart racing hence I don't drink either. I drink very little alcohol for that too has a profound impact on my heart. I have also revolutionized my diet. The American Heart Association has specific recommendations and I abide by them. None of this addresses the cocktail of expensive medications I take for hyperlipidemia, high blood pressure, and chronic heart failure. Every time I read the labels on the medication I am reminded of my mortality and the price I have paid to be included in routine social interaction.<br />
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Being well hydrated is an exercise in frustration even in an accessible city like Denver. The light rail system stations have few accessible bathrooms. Those that exist are located at major hubs like Union Station. Accessing the few accessible bathrooms in train stations, the library, places of business are never a sure thing. In Union Station downtown about 99% of the time a homeless person or weary traveler is camped out in the one stall I can access. The public library bathrooms are overwhelmingly dominated by homeless and not safe to access. On an average day if I go to downtown it will take me an hour to get there on the train and another hour to find an accessible stall. Finding an accessible toilet is a time consuming day changing effort. The little blue international symbols of access you see everywhere are meaningless. Bathrooms may abound but few are accessible.<br />
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Essentially a hydrated paralyzed person's day is dictated by accessing a toilet. Dehydration for me is no longer an option hence much of my time is spent in the quest for an accessible bathroom. The able bodied will say--use a family bathroom. They are huge. Correct. They are big accessible and always locked. Getting the key to the family restroom in Union Station requires a phone call to security and typically a 45 minute wait for a guard to show up. I am not naive. If the bathroom was not locked homeless people would camped out inside. This knowledge does me no good as I wait.<br />
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Good things come to those that wait I suppose. The other day I came across a fascinating project: "Around the Toilet". Three years of work went into this project and researchers just released "Around the Toilet: A Research Project Report About What Makes a Safe and Accessible Toilet Space". Link: <a href="https://aroundthetoilet.files.wordpress.com/2018/05/around-the-toilet-report-final-1.pdf">https://aroundthetoilet.files.wordpress.com/2018/05/around-the-toilet-report-final-1.pdf</a> Prior to reading this report I had never thought accessing a toilet would make me feel included and give me a sense of belonging. The fact is I feel very much excluded every time I use the toilet. I do not know the percentage but the odds of me finding an empty stall I can access is stunningly small. Every day I end up sitting outside a stall waiting for the able-bodied person to get out of the one toilet I can access. After forty plus years of paralysis it finally dawned on me just how wrong and exclusionary this is. I also realized I am far from alone. Other groups encounter barriers accessing toilets. I am not referring to disparities women encounter on a regular basis in the form of a line to use the toilet. This UK based research project main findings included the following:<br />
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<li style="font-family: SymbolMT; font-size: 12pt;"><i><span style="font-family: Calibri; font-size: 12pt;">Toilet provision in the UK is currently inadequate for a wide range of people, due to both </span><span style="font-family: Calibri; font-size: 12pt;">relational </span><span style="font-family: Calibri; font-size: 12pt;">and </span><span style="font-family: Calibri; font-size: 12pt;">functional </span><span style="font-family: Calibri; font-size: 12pt;">flaws. We need more public toilets, more accessible designs, and different attitudes and ways of understanding the space and our fellow occupants.</span></i></li>
<li style="font-family: SymbolMT; font-size: 12pt;"><span style="font-family: Calibri; font-size: 12pt;"><i>Many trans and disabled people experience significant difficulties in accessing a safe, usable and comfortable toilet away from home.</i></span></li>
<li style="font-family: SymbolMT; font-size: 12pt;"><i><span style="font-family: Calibri; font-size: 12pt;">Toilet</span><span style="font-family: Calibri; font-size: 12pt;">s labelled as ‘accessible’ are often in fact </span><span style="font-family: Calibri; font-size: 12pt;">inaccessible </span><span style="font-family: Calibri; font-size: 12pt;">for many disabled users for a range of reasons.</span></i></li>
<li style="font-family: SymbolMT; font-size: 12pt;"><i><span style="font-family: Calibri; font-size: 12pt;">There is a lack of toilet research, particularly in the UK, which takes seriously trans</span><span style="font-family: Calibri; font-size: 12pt;">people’s experiences of harassment and violence in binary gendered toilets.</span></i></li>
<li style="font-family: SymbolMT; font-size: 12pt;"><i><span style="font-family: Calibri; font-size: 12pt;">There is a need for more all-gender toilet provision </span><span style="font-family: Calibri; font-size: 12pt;">(sometimes known as ‘gender neutral’ toilets)</span><span style="font-family: Calibri; font-size: 12pt;">. This would benefit a range of people including: parents with children of a different gender; those who care for people of a different gender; some disabled people who have a personal assistant of a different gender; and some people whose gender is questioned in the toilet, including some trans and non- binary people (and, to a lesser extent, some cisgender people).</span></i></li>
<li style="font-family: SymbolMT; font-size: 12pt;"><i><span style="font-family: Calibri; font-size: 12pt;">A ‘one size fits all’ approach to toilet design doesn’t work – </span><span style="font-family: Calibri; font-size: 12pt;">there is no one toilet design to </span><span style="font-family: Calibri; font-size: 12pt;">suit all users’ needs. </span><span style="font-family: Calibri; font-size: 12pt;">Nevertheless, consideration of </span><span style="font-family: Calibri; font-size: 12pt;">all </span><span style="font-family: Calibri; font-size: 12pt;">users and moves towards improvement are crucial.</span></i></li>
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The implications for the lack of accessible toilets is profound. Researchers concluded the following:<br />
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<li style="font-family: SymbolMT; font-size: 12pt;"><i><span style="font-family: Calibri; font-size: 12pt;">an inability to leave the house, restricting access to wider environment and community, leaving and losing jobs. In other words, not having access to suitable </span><span style="font-family: Calibri; font-size: 12pt;">toilets impacts upon people’s </span><span style="font-family: Calibri; font-size: 12pt;">fundamental ability to live their lives.</span></i></li>
<li style="font-family: SymbolMT; font-size: 12pt;"><i><span style="font-family: Calibri; font-size: 12pt;">restrictions upon bodily functions</span><span style="font-family: Calibri; font-size: 12pt;">, including reducing food and drink and ‘holding on’</span><span style="font-family: Calibri; font-size: 12pt;">for long periods of time, all of which can have serious health implications.</span></i></li>
<li style="font-family: SymbolMT; font-size: 12pt;"><span style="font-family: Calibri; font-size: 12pt;"><i>feeling socially unrecognised, unworthy, and unwelcome, if toilets do not meet your requirements and/or recognise your identity.</i></span></li>
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I have experienced each and everyone of these findings. For me, the problem of accessing toilets has gotten worse not better because of my heart condition. It is simply bad for my health to not drink fluids and be dehydrated. Indeed, one of the shocking things to me is exactly good I feel now that I am well hydrated. Hydration is a privilege of the able bodied who thoughtlessly access toilets on a regular basis. The implications for the lack of accessible toilets is profound. I have heart disease because I am paralyzed and have spent nearly four decades dehydrated on a nearly daily basis. Sure a compromised autonomic system has done me no favors but if I am reading peer reviewed medical journals correctly researchers emphasize hydration is required for healthy hearts. Moving to Denver, a high arid city at altitude, has only highlighted the need to be well hydrated.<br />
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In writing this post I often thought of Branislaw Malinowski who used the phrase the "imponderabelia of every day life" when he did ethnographic research in the Trobriand Islands. Malinowski here was referring to phenomena of importance that cannot be understood from afar or via the written word (arm chair ethnography). To really understand culture it had to be observed on a daily basis. The mundane he concluded could teach us about why we behave as we do. Seemingly unimportant routines, how we care for our bodies, make food, house ourselves etc. can teach us about who we are as humans. The same can be said of the toilet and whether it is or is not accessible to others. Yes, those long periods of waiting to access a toilet have not been wasted. It is a post such as this that makes me realize how lucky I am to have found the field of anthropology. It has helped me understand the world and my place in it.william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com1tag:blogger.com,1999:blog-1556371561007953336.post-2785292207499778742018-08-08T16:46:00.002-07:002018-08-08T16:46:55.181-07:00Nail Salon Bigotry Turns into Feel Good StoryMainstream media outlets routinely butcher stories about disability. I never cease to be amazed how disability based discrimination gets glossed over and turned into a feel good story or what many call inspiration porn. In 2012 video, comedian Stella Young brilliantly deconstructed inspiration porn. She defined Inspiration porn as follows:<br />
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<i>Inspiration porn is an image of a person with a disability, often a kid, doing something completely ordinary--like playing, or talking, or running--carrying a caption like 'your excuse is invalid'... It's there so that non-disabled people can look at us and think 'Well, it could be worse... I could be that person'.</i><br />
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The spring is filled with dehumanizing inspiration porn. The paralyzed young man who uses an exoskeleton to walk across a stage to receive his diploma. The crowd cheers wildly. Stories abound about paralyzed wives, paralyzed moms, paralyzed dads, and people with a disability doing something, anything really, and people fawn all over them as though they are heroes. Stories also abound about non-disabled people doing something nice with a disabled person. Ordinary events like lunch, going to a baseball game, getting in or out of a car, shopping, traveling on a bus or train, etc are turned into inspiring events. In this video age such inspiration porn inevitably ends up on You Tube and major news outlets. They are used as 30 to 60 second clips at the end of a broadcast designed to make non disabled people good about themselves and the world. Comment sections under such stories all gush about how inspired they are.<br />
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I have deconstructed many inspiration porn stories on my blog. The reaction is always the same--non disabled people get angry and a hate emails fill my mailbox. Pouring a dose of reality on a supposedly tear jerking story is not the way to become popular. Indeed, I am weary of deconstructing inspiration porn because the negative reaction is swift and immediate. In post a post factual society, one replete with "<i>alternative facts",</i> pointing out that there is nothing real going on in inspiration porn stories is a sure fire way to alienate people. Living up to my moniker bad cripple, today, I cannot let an inspiration porn story go without comment in part because I was taken to task on twitter.<br />
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ABC and many other mainstream news outlets had stories about an incident in Michigan. Apparently Angela Peters went to a nail salon to get her nails done. Peters has a disability and it is difficult to hold her hands still. Peters was told by the nail salon that it would be too difficult to do her nails and she was refused service. An employ of a nearby Walmart, Ebony Harris, who knew Peters decided to help her. Together, Harris and Peters picked out a colorful nail polish, went to a nearby Subway seating area. There Harris set up a DIY nail set up and did Peters nails. Tasia Smith who works at Subway saw what was going on and took photographs and of Harris doing Peters nails. An essential component of inspiration porn is the non disabled person must be humble. Harris told reporters that she gave up her break to do Peters nails. Harris simply wanted to make the day special for Peters and did not want her day to be ruined. While doing Peters nails Peters apologized for her hand movements. In reply, Harris stated she was nervous too because she did not want to mess up Peters nails. Smith who took the photographs posted them on Facebook and the images went viral. Smith wrote "<i>She did great, barely moved & was just so sweet. It's an absolute shame that they denied her for something so little".</i> Harris has been predictably humble telling various news outlets, "<i>I love it and it hit my soul in a very deep place. It makes me feel good, but its very overwhelming". </i> Walmart seized on this opportunity and issued a press release stating:<br />
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<i>Ebony simply wanted to make sure our customer's day was special, and that's the kind of person she is--someone with a wonderful attitude who goes the extra mile each day to make those around her feel important. We're not surprised at her act of kindness. Her service to customers defines the spirit of Walmart and we couldn't be more proud. </i><br />
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Another key component of inspiration porn is for the disabled person to be utterly silent or as humble as the non disabled "helper" being lauded. Thus news outlets were quick to point out that Harris and Peters goal was to raise awareness for people with disabilities. They did not want the nail salon to be punished or others to boycott the salon. Peters told ABC news:<br />
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<i>I forgive the nail people for not doing my nails. When people do us wrong we must forgive, if not we harbor bitterness. I don't want anyone fired, I just want to educate people that people with different challenges like being in a wheelchair, we can have our own business and get our nails done like anyone else. </i><br />
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Harris agreed with Peters and told ABC news: "<i>We want people to look at the positive side of the story, that there are a lot of good people out there". </i><br />
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The above story is an absolute text book example of inspiration porn. The reality of what actually took place is not inspiring. The nail salon flagrantly violated the law. Peters could and should have filed a formal complaint under the Americans with Disabilities Act (ADA) with the Department of Justice. Peters civil rights were violated. The fact Walmart used its public relations department to disseminate the story to all the major news outlets is not mentioned. The fact people with a disability are routinely turned away from nail salons, hotels, motels, airlines, restaurants, museums, mass transit systems, housing, schools, universities, and denied services in every state of the nation is also not mentioned. The word ableism remains unknown for this reason. Peters wants others to be educated and enlightened about disability. Good luck with that. All the education in the world will not eliminate disability based bigotry. Education was not the reason 40 years of progressive legislation designed to empower people was passed into law. Civil disobedience and protests that shamed others led law makers to write laws that protect the rights of people with a disability. When I read Peters comments about forgiveness and bitterness I was repulsed. As a person with a disability if I have learned one thing it is that being nice and being quick to forgive others will insure our constructed environment will remain grossly inaccessible now and forever. As Stella Young noted in her talk about inspiration porn all the longing looks in the world will not make a staircase go away and get an elevator installed to provide equal access.<br />
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Equal access. Equal rights. This is the lost story. As I see it we have moved into a new era of disability rights. Those of rabble rousing age grew up in post ADA America. As people with a disability came of age they knew lots of laws existed regarding disability. Most people agreed the laws about access and equal rights should be adhered to. Out right bigotry of the sort I experienced has morphed into a formulaic politeness. Heads nod that any and all "<i>reasonable accommodations"</i> should be made. The problem is those accommodations can take years to get. Need a note taker in your class? Fill out these forms, see a physician to see if you qualify, talk to the ADA coordinator, disability services, and your professor, and hopefully by the end of the semester a note taker will be found. Worse, virtually no people with a disability are in positions of power hence a "<i>reasonable accommodation" </i>will be decided by a person that is almost certainly non disabled and most likely knows nothing about disability. Add in <i>"reasonable accommodations"</i> are resented and seen as some sort of scam and an underlying hostility exists in most institutions. Here in Colorado for example I have worn out the rug to my physician office with all the forms required by the state. Such forms must also be filled out to perfection. No blue ink. Ink must be black. Form rejected. None of this includes the time and labor involved. For example, I was in the Department of Motor Vehicles for over 5 hours getting license plates. I get to do this all over again to get a handicapped placard.<br />
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After thinking about the story above, I have concluded to be valued as a human being one must be able in the extreme. By able I mean young, active, absent any sort of disability, fit (not obese), employed, and preferably attractive, white and heterosexual. Based on my drive across the nation and the hatred being spewed out by the GOP on a daily basis, I can only conclude intersectionality is bad. Difference is feared and I sure as hell am different. As a society we are not merely regressing but taking giant strides backwards. Unlike Peters who is eagerly willing to forgive others who violate her civil rights, I feel like am a throwback to a time gone by. I stand up for my civil rights. When people violate my rights I get angry. I do not meekly do as I am told. I am willing to point out disability based injustice. I am willing to upset others. None of this is easy. As noted above, I live up to my moniker. william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com0tag:blogger.com,1999:blog-1556371561007953336.post-37664566659148699642018-08-07T17:54:00.000-07:002018-08-07T17:54:02.663-07:00A Wheelchair Can Be Too LightLast weekend I went for a drive with two friends. I had been told repeatedly that the drive to the Mount Evans Summit was nothing short of spectacular. The Mount Evans road is certainly not for the faint of heart--it is the highest paved road in North America. There are no guard rails and the road is very narrow with multiple hair pin turns. I would venture to say it is the most challenging road I have ever driven. The best section of the road and most challenging is the 28 mile segment from Idaho Springs to just below the summit of Mount Evans. In that distance one goes from 7,540 feet to 14,130 feet. The views from the summit are nothing short of breathtaking. According to the National Park Service, traveling to the Mount Evans summit is akin to driving through Canada to Nome, Alaska. Every 1,000 feet gained in the mountains is the equivalent to traveling 600 miles in latitude.<br />
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I did not take any photographs on the drive. The drive required 100% concentration and once pass Summit Lake there is virtually no safe place to pull over. When we left Denver it was warm and sunny--mid to upper 80s. In the West however weather can change fast. In addition, we were going to gain 7,000 feet in elevation. By the time we got to the Mount Evans road clouds had moved in and it was raining. The temperatures dropped rapidly--more than the average drop of 3.5 to 5 f. per 1,000 feet of elevation gained. Half way up to the summit it was 42 f. and windy--a drop of over 40 f. At the summit parking lot the temperature was 37 f. with sustained wind gusts at 40 to 50 mph. The wind chill made it feel like it was in the low teens. I was thrilled! I love the cold. I wanted to explore as I knew the hike to the summit itself was wheelchair accessible and a mere 1/4 mile. We never got out of the parking lot. Once in my wheelchair the wind was so strong it was almost impossible for me to independently control my wheelchair. I have felt strong wind gusts before. Sitting in my new light weight wheelchair is almost like being a sail. To date, this has been great fun or great work. The fun is allowing the wind to move me at break new speeds. The work is going against the wind. Wind in a wheelchair as light as mine is major variable and something I have never thought about.<br />
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The powerful wind at the top of Mount Evans moved me in ways I have never felt before. I was on the verge of being completely out of control and unable to stop my wheelchair. At over 14,000 ft. I was winded from transferring from the car to my wheelchair and moving across a small parking lot. I was also chilled to the bone. In a visceral way Mother Nature demonstrated her power and my hubris. I was not prepared for the weather or wind. In more ways than one I was blown away. From the summit one can see most of the Continental Divide in Colorado. One can also see Longs Peak, Denver, Pikes Peak, and Mount Bierstadt. The drive and summit views were incredible experiences. Better yet I learned a basic fact without injury. My wheelchair is too light in sustained high winds. I never thought I would live long enough to write that statement. I look forward to going back on a day when I am well prepared for the weather and altitude. It looks like I will need to dust off my ancient back up wheelchair and refurbish it if I am going to hike around the top of Mount Evans. Simply put, I need a far heavier wheelchair if I am going to make the short hike to the summit. Amazing.william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com0tag:blogger.com,1999:blog-1556371561007953336.post-50461474138634572722018-08-06T07:03:00.003-07:002018-08-06T07:03:56.938-07:00Driving Across the CountryI drove from Denver to New York and back in my new car. In less than a week I drove a little over four thousand miles. I needed to bond with my car. We are truly bonded. Getting my wheelchair in and out is a snap and my little fuel sipper averaged 36 mpg on the trip.<br />
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Random thoughts as I drove across the heartland without a satellite radio meaning I listened to a lot of bad country music, right wing talk radio and even worse religious talk.<br />
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Billboard in Ohio: "<i>When you die you will meet God. You have been warned". </i><br />
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Talk radio in Iowa: "<i>Elizabeth Warren is a radical whose socialist agenda is designed to destroy all that America stands for. She is amassing hundreds of millions of dollars to run for president. We can't let that happen. Socialism is the enemy of this nation. She is more dangerous and leftist than Bernie Sanders. Trump and Pence will make America great again"</i><br />
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Talk radio in Nebraska: "<i>Democrats want to undermine our faith and belief in God. Religion is under attack and the leftist Democratic Party wants heathens to pour into our country from Mexico, assault our women, and destroy our churches. We are under siege"</i><br />
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Laura Ingraham: Of course I know who Ingraham is. I have read many of her controversial statements and know she is a so called ardent nationalist who is a vigorous supporter of Trump. I also know she has a radio program. It is one thing to know these facts and another to listen to her spew hatred and disinformation on her radio show. I was shocked by her lies and the venom directed at gay people and immigrants. After 30 minutes I was so flabbergasted and disturbed I changed the station. Bad music or silence was preferable.<br />
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Add for an unnamed political candidate, Indiana: "<i>Candidate is endorsed by the NRA and is a gun owner. Candidate will protect the rights of the unborn and will broker no assaults on religious freedom. The candidate served honorably in the airforce. He is a leader of God faring men. If you love this country and want to defeat radical democrats this is our man."</i><br />
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Gas station in Ohio. I am being stared at as I pump gas by two men in a 1960s era pick up truck covered in mud. They have a conversation about how they now let anyone drive. They appear to be offended by my existence and the fact I am driving a Honda. Clearly unimpressed with me and my driving ability they discuss how to get to their destination without getting on the interstate because they let people like me drive.<br />
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Checking in at a cheap motel: Me: <i>"Do you have a wheelchair accessible room". </i>Desk clerk: <i>Who are you with? Where is your caretaker?" </i>Me: <i>"Do you have a wheelchair accessible room?"</i> Desk Clerk, confused and a little annoyed: <i>"I think so". </i>After looking at a computer screen for a long time, looking beyond me and outside as though he is expecting a caretaker to arrive finally answers yes.<br />
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Cheap motels: Wheelchair accessible at national motel chains is iffy at best. Days Inn, Baymont Inn, Red Roof Inn, Super 8, Microtel, etc. accessible rooms range from very accessible to not accessible at all. I had an accessible room with a roll in shower that had a step to enter the shower. All rooms I stayed in did not have the bathroom towels, iron, ice bucket, hanger rod etc. were within reach. The motels pools had wheelchair lifts. 50% of the lifts were broken. <br />
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Thanks to ADAPT: In one of ADAPTs first national efforts in the early 1980s was to convince all McDonalds to be accessible. The initial reaction from the McDonalds corporation was predictably negative. Fast forward to the present day and McDonalds food may be terrible but I knew with certainty any and all McDonalds bathrooms were accessible.<br />
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Local Museums in Iowa: Two little museums in Iowa were an oasis of fun. The Iowa Museum of Aviation is a wonderful small museum that displays historic aircraft. The museum's collection concerns Iowa aviation and its archive is first rate. The Bob Feller museum was a hoot. Feller grew up in rural Van Meter, Iowa and found himself as a 17 heard old playing professional baseball. He threw a fast ball over 100mph. I cannot imagine the culture shock he experienced leaving Iowa for New York and forging a Hall of Fame career with the Yankees.<br />
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Nebraska and Colorado. The speed limit is 75 mph. I was content to drive in the right lane at 80mph. Cars were blowing by me at over 100mph.<br />
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All of middle America. Giant pick up trucks abound. With gas at $3 a gallon what does it cost to fill up these beasts.<br />
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My drive across America was educational. I learned in a visceral way why Trump was elected. There are millions of angry conservative, white, Christian, rural Americans who are afraid of change. The white bubble in which they live is changing. This change is perceived as an attack on their lives. In Iowa I heard a lot about hog and soy bean prices but thrown in with such news was a healthy dose of fear. Anything and everything outside the United States is suspect. Trump has tapped into middle American fear with simple statements--the most famous of which is "<i>make America great again"</i>. This is meaningless rhetoric to me but to rural residents in middle America and conservative Christians this is exactly what they want to hear. There is no need for education. No need to Google and learn. Indeed, there is an anti intellectualism that is deeply disturbing. The answers are obvious and need no explanation. I felt this. My kind are not wanted. Oh yes conservative Christians love to pray for me but they deeply resent special education, accessible rooms, pool wheelchair lifts, accessible buses etc. I am as threatening symbolically as any non white person. As such, I was referred to as "you people" daily at gas stations and motels across the nation. I was openly stated at every time I put gas in my car. More than ever, I am aware I live in a little bubble here in Denver. I am equally aware we have a national problem fostered by Trump. We have elected a demagogue who has all the answers and any person or organization that defies his pronouncements are an "<i>enemy of the peopl</i>e"--his words not mine. These are truly troubled times.william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com3tag:blogger.com,1999:blog-1556371561007953336.post-31301489498773014172018-07-23T15:37:00.001-07:002018-07-23T17:25:15.970-07:00Out and About and Routine Harassment I have lived in Denver over a year. This is the first city I have lived in that is truly accessible. I take the train and bus everywhere I go. Before I arrived, I sold my car because there was no pressing need for a vehicle. I was also concerned about driving post heart attack. For a few months after my heart attack I was continually short of breathe. I experienced lightheadedness. I had pulmonary edema. My legs were the size of tree trunks. Going down the hallway where I live left me breathless. I was not going to drive a car and put myself and others at risk. I felt it prudent wait a year before I would evaluate the need for a car. Well, a year has passed and I am asymptomatic. I am no longer short of breath. I have some edema but that is related to the summer heat and routine paralyzed life. I am never lightheaded. The only bodily change I have noted is that I am increasingly sensitive to heat and hills, whether pushing my wheelchair or riding my bike, sap my strength quickly. If this is what life is like when one's heart is failing, I will take it any day of the week. Indeed, the only time I think about my heart is when I take medication in the morning and evening.<br />
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Without a car, when I shop I am rarely alone. By shop, I mean the big hauls of groceries and routine errands to locations where the rail or bus does not go. Now with a new car, I am free to go out even when it is very hot. The degree of freedom a car awards a person is nothing short of amazing. Even in a city with accessible mass transit, having a car is a real luxury. I have not driven in almost two years and the car has energized me. In a car I am on equal footing with bipeds. There is no difference between me and any other driver. In the short period of time I have been driving and interacting alone, I have been forcibly reminded by others my existence is way out of the norm. In just the last week I have had many rude and insulting remarks directed at me. I am free game to others. A random sampling of unwanted comments or experiences I have received in the last ten days:<br />
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"<i>Where is your caretaker? You can't be allowed out by yourself".</i><br />
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"<i>You can drive? That does not seem safe."</i><br />
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"<i>Where is your back pack? All wheelchairs have back packs for groceries". </i><br />
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"<i>Wow, getting in and out of a car looks like a time consuming process. Thank God I am not wheelchair bound".</i><br />
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At Costco, three people grab my cart and push it away from me for no apparent reason. A stranger informed me an employee of Costco should be pushing the cart for me. Apparently I was showing off and acting like I was independent.<br />
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Mothers grab their child's hand and state "<i>Watch out for the wheelchair".</i><br />
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At the gas station, an attendant stares at me as I take my wheelchair out of the car. He appears mentally altered and is cursing under his breath about what a "<i>stupid mother fucker"</i> I am.<br />
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Welcome to Donald Trump's American society. Ignorance, bigotry and hatred have been normalized. Viral videos abound of racist behavior--white people feel free and justified to call the police when black people have the nerve to simply exist. This week I have been forcefully confronted with the reality that I too am subjected to taunts and bigotry. My crime? Being out and about alone. The above comments are predicated on being alone. When I am alone, I am a target. Independence for crippled people comes with a heavy price tag. Hence, I am reminded yet again that I am the other. Strangers do not see me as a human being but rather a wheelchair--an inanimate object that is deeply stigmatized. It is though my existence takes place in circus sideshow replete with distorting mirrors. When I am subjected to unwanted comments it is though people see everything but me and rely on figments of their imagination to extrapolate what my life is like. The irony here is they have failed to use their imagination. If there is one thing I truly embrace about life with a disability it is imagining what is possible. And believe me, there is a world of possibilities--one just needs to be creative enough to imagine a good life. Of course this imagination is dependent upon adequate social, societal, and economic support. And this gets me back to Donald Trump and the GOP that seems hell bent on stripping away any semblance of social support for the poor, disabled, elderly and all others who are vulnerable. Last week was a forceful reminder where I stand in American society--stigmatized and unwanted. Not to worry though. I remain undaunted as do many of my crippled peers and this alone makes my heart soar with pride.william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com1tag:blogger.com,1999:blog-1556371561007953336.post-41171669540918526022018-07-13T09:06:00.000-07:002018-07-13T09:06:19.314-07:00Ticket Seller's IgnoranceI love baseball in large part because the game saved my sanity as a morbidly ill child. I seen much of my youth on the pediatric neurological ward at Columbia's renown Babies Hospital. Back then, children were not allowed act like kids--our job was to get well. Rigid rules abounded. Rules my parents broke on a regular basis. One of those rules was permission to use a small electronic radio. I listened to the New York Mets--my favorite team then and now. In my opinion, baseball radio broadcasts are the best way to enjoy a game. A close second is to attend a baseball game. This is exactly what I did yesterday. I went to see the Colorado Rockies play in the afternoon. I ordered my tickets online and was directed to the will call window to pick them up. This routine interaction did not go well.<br />
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Me: <i>"Last name Peace".</i><br />
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Agent: <i>"Who bought the tickets for you?"</i><br />
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Me: <i>"I did".</i><br />
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Agent: "Y<i>ou can do that?"</i><br />
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Me: <i>"Yes, I bought the tickets. Last name Peace".</i><br />
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Agent: "<i>Where is your caretaker?"</i><br />
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Me: "<i>Last name Peace. One ticket"</i>.<br />
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Agent: <i>"How did you get here?"</i><br />
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Me: "<i>Last name Peace".</i><br />
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Agent: "<i>Who brought you here?"</i><br />
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Me: <i>"Last name Peace. Please, I want my ticket". </i><br />
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Agent: "<i>You don't have to be rude. I am trying to help you".</i><br />
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Me: "<i>Last name Peace". </i><br />
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I then slide my driver's license in the slot along with credit card I used. The ticket is printed out.<br />
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Agent: "<i>Your ticket is not handicapped!" </i><br />
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Me: "I kno<i>w. May I please have my ticket"</i>.<br />
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Agent: "<i>You are supposed to be in handicapped parking. You are not allowed to sit anywhere else".</i><br />
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Me: "<i>I bought a $9 general admission ticket. I can sit anywhere I want"</i>.<br />
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Agent: <i>"Well, can I get someone to help you. We have wheelchairs available. We have people to push you where you want to go". </i><br />
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Me: <i>"May I please have my ticket". </i> <br />
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Agent: "<i>Are you sure you are alone? You really need a caretaker". </i><br />
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Me: "<i>May I please have my ticket". </i><br />
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Agent: "<i>How will you get home after the game?"</i><br />
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Me: <i>"May I please have my ticket"</i>.<br />
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Agent: "<i>You should not be out by yourself</i>".<br />
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Obviously perplexed I am not answering his questions at long last I get my ticket. There is no "<i>enjoy the game</i>" statement--just a stoney silence and annoyed look. Such exchanges are not the norm; however, they do occur on a regular basis. One variable is constant: such exchanges always take place when I am alone. As I often joke with friends, we cripples only travel alone or in pairs. We cannot travel in more than pairs because buses and trains routinely only have two places for us to sit. When alone, we are free game. Nothing about our lives is private. Bipeds think they are wildly creative about solving our problems that do not exist and freely offer help that is not needed. Bipeds are also curious beings. No question is too intrusive and we cripples must at all times be happy to answer any and all questions like "<i>Where is your caretaker</i>". On my train ride home after the game I wondered about the ticket agent. What was he taught about disability? What did he absorb growing up? It is evident to me that what people absorb and are taught about disability remains wildly inaccurate. The over riding lesson learned nearly 30 years post ADA is unchanged: crippled lives are less valuable. We are the worst case scenario for how life can go wrong. Access is provided as an act of charity, not equal rights. This is exactly why disability rights are a stealth civil rights movement. What could I have done yesterday to educate the ticket agent? Nothing. And the ticket agent while woefully ignorant is not unusual. Ignorance is the norm when it comes to disability. I am subjected to ignorance on a daily basis. Worse, in the current political and social meleiu disability rights are under assault by Trump and the GOP. Medicaid is being cut and access to health care, housing, mass transit, and employment are exceedingly difficult. Disability rights and more generally the rights of any person who is somehow different is perceived to be an affront. I am no snow flake. I am one of millions of people in this nation living and thriving with a disability. Some days I find this defeating but today I am energized. Good people still exist--even some bipeds get it and are allies of disability rights. People like Wade Blank who along with 19 disabled people, the Gang of 19, here in Denver started a successful nationwide movement to make the mass transit system accessible. Without that effort 40 years ago, I would not have been able to take the train to a baseball game and be confronted with impressive ignorance.william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com1tag:blogger.com,1999:blog-1556371561007953336.post-58954156090487478552018-06-28T14:11:00.001-07:002018-06-28T14:11:37.300-07:00New Wheelchair EnthusiasmMost people are familiar with new car enthusiasm. New car enthusiasm means the brand new car gets thoroughly cleaned on a regular basis. People experiencing new car enthusiasm often chose to park a bit further away from the entrance to stores in the hope that inevitable door nicks can be avoided. For some, new car enthusiasm lasts a few years and for others a few weeks or even days. This year, I have learned a similar phenomenon exists with new wheelchairs. I have a serious case of new wheelchair enthusiasm. My new wheelchair enthusiasm remains solidly in place six months into ownership. My wheelchair is not a little bit clean--it is spotlessly clean. Think car dealership show room clean--my wheelchair does not get waxed liked a car but I clean it daily. I clean the tires each and every time I leave my apartment. I wipe down the frame with a cleaning cloth several times a week. I clean the front wheels twice a week. I clean the upholstery thoroughly every weekend. Once a week I clean the spokes, rear hubs, and rims. Every weekend I get out of my wheelchair and check every screw to insure they are tight. I fold down the back and lubricate the quick release axles. I diligently remove hair that inevitably collects in the front wheel hubs. The level of care my new wheelchair receives is over the top. In fact, the most common question people now ask me-"<i>Is that a band new wheelchair?".</i> I do not foresee new wheelchair enthusiasm changing any time soon.<br />
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Using a modern wheelchair is an interesting experience. My old wheelchair was 30 years behind the times. It was state of the art circa 1985. When compared with contemporary wheelchairs it looked hopelessly antiquated. This did not bother me one iota. I have a passionate dislike for the wheelchair industry and successfully avoided thinking about new wheelchairs for over three decades. The technology associated with my old wheelchair may have been antiquated but it was technology that worked and virtually never broke down. My old wheelchair could take a beating and was very simple to repair. Modern wheelchairs are not so rugged. This is the main worry I have with my new wheelchair. It is a modern marvel but I have no idea how long it will last. I have modest expectations in this regard. I am particularly skeptical with regard to the carbon fiber frame--a costly upgrade. No doubt the frame is strong and rigid despite the fact the back upright folds down. The rear rigidizing bar, a smart design feature, makes the wheelchair feel solid. The rear wheels, made by spinergy, another costly upgrade, will not last long. The tires already need to be replaced and a few spokes are slightly bent. The back upholstery is not holding up well. It will need to be replaced in a few months at the most. The seat upholstery has a tear and will also need to be replaced soon. I had expected the upholstery to last at least a year and am deeply disappointed. If necessary, replacing the upholstery every six months will be costly. On the positive ledger, the bearings, front and rear, feel new. I sense no deterioration in performance. The front wheels appear to have a long life ahead of them. The front casters which take a real beating are holding up well.<br />
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While I appreciate my new wheelchair I do not love it like my old one. My old wheelchair had a feel and soul. After 30 years, it was an integral part of me. I knew what it felt like in frigid temperatures and excessive heat. It had a feel modern wheelchairs simply do not have. I am quite comfortable in my new wheelchair. It is perfect for my urban life style and aging body. It is significantly easier to push. When navigating an airport or train terminal I go at warp speed passing bipeds continuously. Yet I have no expectation my wheelchair will last more than a few years. The parts are prohibitively expensive. A set of upholstery for the back and seat are well over $500 when combined. Scissor brakes are about $300. Good quality rear wheels are over $500. All these parts are showing age in six months and will need to be replaced. High performance it seems to come at a high cost.<br />
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My new wheelchair might need to be replaced within the next few years years. I think about this too much and worry. Given that I plan on flying nationally and internationally later this year there is no doubt I need a second wheelchair in case my current wheelchair has a catastrophic failure or an airline destroys it. Modern wheelchairs in my estimation are not indestructible nor are they designed to last more than a decade. In Denver I see a lot of paralyzed people--especially on the light rail and bus system. The go to wheelchair in this area are TiLite manual wheelchairs. I would estimate 9 of 10 manual wheelchairs I see others using are TiLite. I suspect much of this has to do with Craig Rehabilitation Hospital. Craig is the overwhelmingly dominate rehabilitation center in the area. At a recent Rockies baseball game I saw a contingent of about ten newly paralyzed people--every guy, and they were all men, were using TiLites. This is a decent wheelchair but has a short life. It is the perfect starter wheelchair for a newly paralyzed person that knows nothing about disability. After two years of rigorous use TiLite wheelchairs are worn out. Screws and bolts fall off, the folding back mechanism becomes wobbly, the wheels wear out and the frame becomes loose and is no longer rigid. By year five, most TiLite wheelchairs in my experience must be replaced.<br />
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What the future holds for my wheelchair is unknown. What I do know is the warranty will never be honored. In previous posts I detailed the ridiculous owners manual. Among the many violations I have committed include going out in direct sunlight. I have showered and did not have my non existent care taker remove the wheelchair from the bathroom to avoid the humid environment. I have gone outside in the rain. I have gone through deep puddles of water and, gasp, I have been outside in the snow. I have even hiked on gravel and dirt trails. All these outrageous and ordinary acts void the warranty. This has made great fodder for joking with friends and my son. At a certain level this is quite funny and mocking the owners manual is entertaining. However, when I seriously think about my wheelchair I do not think the manual is funny at all. The owners manual assumes incompetence and complete and utter dependency upon non disabled others. The owners manual assumes the wheelchair user will use the wheelchair under ideal weather conditions and only venture outside on rare occasions. This is a decades old mentality. What bothers me the most is the stark dichotomy between design and expected use. The design of my wheelchair is empowering. It has served me well in its short life. There is no doubt seasoned wheelchair users were consulted and their input went in the end product. There are multiple little things that make my wheelchair a pleasure to use and maintain. Yet I remain troubled. Maintaining my wheelchair might be costly. Routine parts that are destined to wear out are costly and at this initial stage it does not appear will last long. Replacing upholstery yearly is a reasonable expectation. Being required to do so twice a year is unreasonable in my estimation. This is particularly the case given the wheelchair and upholstery has not as yet been subjected to rigorous use.<br />
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For now, I remain impressed with my wheelchair. It has a multitude of advantages over my old wheelchair. It is lighter. It is easier to push. The back folds down and it takes up much less space in a car. I love the fact it came with a little tool kit that fits easily in a bag when traveling. The turning radius is amazing and its footprint is substantially less. About the only thing I dislike is the fact it has no heart. Perhaps that takes time. I only hope it will last long enough for me to fall in love.william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com0tag:blogger.com,1999:blog-1556371561007953336.post-7082750063068030442018-05-30T10:44:00.000-07:002018-05-30T10:44:31.198-07:00The Failure of Disability Rights Movement<span style="font-family: inherit;">I have been active in and around the disability rights movement since 1978. I was paralyzed at age 18--a few months before I was to attend college. I was hopelessly naive. I knew nothing about disability. I knew absolutely nothing about disability rights. In fact, the idea of disability rights barely existed and was far from mainstream thought. In the fours years I was an undergraduate at Hosftra University in Hempstead, New York I learned much about my paralyzed body, the history of disability, disability rights, and the stigma associated with disability. Unbeknownst to me, I attended the perfect university. Hofstra had a sterling reputation for wheelchair access and had a significant commitment to providing reasonable accommodations to all students who identified as disabled. The campus was the perfect safe haven for me. I could explore a hostile world and return to a safe environment. I quickly joined PHED (Program for the Higher Education of the Handicapped) and the wheelchair basketball team. The real learning, the life-changing knowledge I acquired, did not take place in the various classrooms I went to. The real education took place in the dorms where veteran cripples explained how the world worked. Those four years were hard. The transformation from a privileged white kid to the reality of life as a paralyzed man was harsh in the extreme. My reality remains harsh as it does for all those who claim disability as a central part of their identity. </span><br />
<span style="font-family: inherit;"><br /></span> <span style="font-family: inherit;">Harsh is the perfect word for 2017 and 2018 just as it was back in 1978. To have a disability in this nation is harsh. We have a president that is flagrantly racist and ableist. Recently, the official White House website posted a nearly 500 word "article" "What You Need to Know About the Violent Animals of MS-13". Link: <a href="https://www.whitehouse.gov/articles/need-know-violent-animals-ms-13/">https://www.whitehouse.gov/articles/need-know-violent-animals-ms-13/</a> The word animal was used multiple times to describe MS-13 gang members. Yet again, the President has disgraced himself, the office of the presidency, and the American people. Yes, harsh describes not only my life but the lives of all people that are not white, heterosexual, and have a conventionally typical body. Difference today is a threat--any difference. I have spent much time thinking how to survive the next few years living in a nation that has embraced hatred and ignorance--much of which is generated by the White House. My dilemma is basic: I do not know what to do. I am not sure others know what to do as well. We are truly in unchartered waters and at a unique and dangerous time in American history. </span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Recently read a thought-provoking essay by Leah Lakshmi Piepzna-Samarasinha at Truthout entitled "To Survive the Trumpocalypse, We Need Wild Disability Justice Dreams". Link: <a href="http://www.truth-out.org/opinion/item/44526-to-survive-the-trumpocalypse-we-need-wild-disability-justice-dreams">http://www.truth-out.org/opinion/item/44526-to-survive-the-trumpocalypse-we-need-wild-disability-justice-dreams</a> This essay energized and depressed me. I was energized because of passages such as this: </span><br />
<span style="font-family: inherit;"><br /></span> <i><span style="font-family: inherit;"><span style="background-color: white;">if we're going to survive the Trumpocalypse and make the new world emerge, our work needs to be </span>cripped the fuck out<span style="background-color: white;">. Our work needs to center disability justice and the activists at the heart of it who have reclaimed </span><a href="http://www.iupress.indiana.edu/product_info.php?products_id=806824" style="color: #9c162e; outline: 0px; text-decoration: none;" target="_blank">"crip</a><span style="background-color: white;">" or </span><a href="http://kriphopnation.com/" style="color: #9c162e; outline: 0px; text-decoration: none;" target="_blank">"krip"</a><span style="background-color: white;"> as a positive identity, where being sick, disabled, mad, neurodivergent/Autistic and/or Deaf is at the heart of our radicalism.</span></span></i><br />
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<span style="font-family: inherit;">I was depressed to read the author was:</span><br />
<span style="font-family: inherit;"><br /></span> <span style="background-color: white; font-size: 17px;"><i><span style="font-family: inherit;">Sick of single-issue, casually racist white-dominated disability rights movements on the one hand, and of non-disabled Black and Brown movements forever "forgetting" about disability on the other, they decided to create some kind of luscious, juicy movement that would be like what environmental justice was to environmental rights, but in a disability context. </span></i></span><br />
<span style="background-color: white; font-size: 17px;"><i><span style="font-family: inherit;"><br /></span></i></span> <span style="background-color: white; font-size: 17px;"><span style="font-family: inherit;">In recent years I have read similar passages by disability rights activists and scholars. This comment is spot on. The disability rights movement was spurred by white men such as Ed Roberts. Single issues abounded. I readily acknowledge I was and remain a member of the chrome police--a funny term coined by Deaf people who had no interest in wheelchair access that I fought hard for. I get it--the iconic blue wheelchair logo means nothing to deaf people. The fact is the disability rights movement is hopelessly splintered and centered around a medical model of disability. However, I can assure you I never felt white able-bodied privilege when I was an EPVA bus buddy back in the early 1980s. I was spit on by passengers and cursed out by drivers for having the audacity to want to use mass transportation. At least once a year a stranger will comment that death is better than a life with a disability. Segregation and stigma remains rampant. The color of one's skin or gender is meaningless to ableist bigots. </span></span><br />
<span style="background-color: white; font-family: inherit; font-size: 17px;"><br /></span>
<span style="background-color: white; font-family: inherit; font-size: 17px;">When I read the above quote I wondered if my time has come and gone. If so, that's fine with me. Let me merely note that being left behind by young disability rights activists hurts. To be characterized as interested in a "single issue" and deemed "casually racist" is counter-productive. I have given my heart and soul to the disability rights movement. I think I still have a lot to offer but if my presence is unwanted so be it. </span><br />
<span style="background-color: white; font-size: 17px;"><span style="font-family: inherit;"><br /></span></span> <span style="background-color: white; font-size: 17px;"><span style="font-family: inherit;">I get the future power brokers of the disability rights movement does not rest with white disabled and nondisabled men as it once did (and this was a significant problem). The future as I see it is dominated by females and others who are not white, neurotypical, nor gender normative (here moving away from a gender binary is to the benefit of all). This change excites me beyond imagination. I embrace Sins Invalid, the Harriet Tubman Collective as well as those who are neurodivergent and mad. I whole heartedly agree with the author about disability social justice:</span></span><br />
<span style="background-color: white; font-size: 17px;"><span style="font-family: inherit;"><br /></span></span>
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<div style="font-size: 17px; line-height: 1.467em !important; margin-bottom: 10px; padding-bottom: 15px !important;">
<i><span style="font-family: inherit;">Disability justice means people with disabilities taking leadership positions, and everything that means when we show up as our whole selves, including thrown-out backs or broken wheelchairs making every day a work-from-home day, having a panic attack at the rally, or needing to empty an ostomy bag in the middle of a meeting. It means things moving slowly and being led by people even the most social-justice-minded abled folks stare at. And what holds many social justice abled folks back from really going there is that our work may look like what many abled people have been taught to think of as "failure." It's so easy to look at a list of <a href="http://sinsinvalid.org/blog/10-principles-of-disability-justice" style="color: #9c162e; outline: 0px; text-decoration: none;" target="_blank">disability justice principles</a> and nod your head. But the real deal is messy and beautiful -- as messy and beautiful and real as our sick, disabled, Deaf and crazy body/minds. Disability justice, when it's really happening, is too messy and wild to really fit into traditional movement and nonprofit-industrial complex structures, because our bodies and minds have always been too wild to fit in those structures.</span></i></div>
<span style="background-color: white; font-size: 17px;"><span style="font-family: inherit;">This truly resonates as I know I have never been nor will I ever be the image people have in mind when they think college professor or writer. This sentiment is forcefully brought home every time someone asks me if I can read. Stigma stubbornly clings to all those with a visible disability. There is no hiding my wheelchair. My"needs" are ever so special and when the social veneer of acceptance is wiped away deeply resented. When I show up at academic meetings or university campuses I am met with rolling eyes, stony silence, and blank stares. When I ask about accommodations for disabled faculty I might as well be asking when is the next shuttle to the moon. The assumption here is no faculty member could possibly be disabled. No speaker could possibly need a ramp to access a stage. I am told "Of course the meeting is accessible". Yet no one knows where the bathroom is located, where the food set out is totally inaccessible, and the accessible entrance is in an obscure location, and the after meeting decompression gathering held in an inaccessible location. I guess what I am saying is that I am tired of being left behind and excluded. Long ago, I was excluded from accessing mass transit. Today </span></span><span style="background-color: white; font-family: inherit; font-size: 17px;">I am excluded from attending academic meetings because they are too costly for independent scholars to attend (independent here means under-employed). My presence on university campuses is less welcoming today than it was when I left for college. I suppose I must just accept Lenny Davis observation that normal and abnormal are created by a certain kind of society. In American society I fit squarely into the abnormal category--something I have railed against for over 40 years. Today, it feels like I will never escape abnormality. Worse, I doubt I will ever be normal or ordinary. That is something I once dreamed of and will not live to see. </span>william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com0tag:blogger.com,1999:blog-1556371561007953336.post-11028281341008519192018-05-21T18:00:00.002-07:002018-05-21T18:00:58.188-07:00Sometimes Paralysis SucksYesterday was unpleasant and uncomfortable. Like many people who survive and thrive with paralysis, I have multiple secondary complications associated with a severely damaged spinal cord. I have a long history of skin break-downs. Indeed, I had one wound that almost ended my life in 2010. Within the last year, I have developed a serious heart condition and take what seems to me to be far too much medication. Every time I organize these medications it is sobering to read "<i>take daily for chronic heart failure</i>" or "<i>for pulmonary edema due to chronic heart failure</i>" or take one tablet for "<i>hyperlipidemia</i>". When I read this I am all too aware of my mortality. I am also aware that heart failure is common among people who have lived decades after a spinal cord injury. For me, living for decades on the edge of dehydration because bathrooms are rarely accessible has taken its toll. In short, like millions of others, I am living with chronic heart failure. But here I digress.<br />
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Yesterday was bad because I was cold. I was not cold in the typical way the average human with a functioning spinal cord gets cold. My autonomic system is dysfunctional. As a result my ability to feel the cold is seriously impaired. Unlike most people with a spinal cord injury, I love the cold and hate the heat. The cold and rigorous exercise makes my spasticity go away. My legs which typically have significant tone turn to jelly for hours after I am done skiing, biking, or kayaking. Yet I also experience another kind of cold unrelated the temperature outside. I can feel bone-chilling cold for hours. Many paralyzed people know this feeling. The cold I feel is hard to explain. If we humans have an internal thermostat, mine is dysfunctional. Yesterday I felt bone-chillingly cold for hours on end. The cold I felt was exhausting. Thankfully what I experienced yesterday was uncommon. I know that at some point my internal thermostat will return to what passes for normal. I also know I am very lucky. I have never experienced autonomic dysreflexia a potentially fatal condition associated with high level of spinal cord injury (generally above T-6). I simply do not get urinary tract infections and do not have kidney disease or bladder issues. I do not have a long arduous bowel program. The circulation in my legs is quite good thanks to excellent vascularization. The neuropathic pain I experience is not overwhelming and does not affect my life-style. In short, the serious complications associated with paralysis are relatively minor. With an acute awareness of my body combined with decades of bodily management free of well-meaning but ignorant physicians who know little about living with paralysis I am in good shape. Yes, I am one lucky paralyzed man. That is my mantra after bad days--and yesterday was bad.<br />
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Despite my bad day, I still marvel at my body. It has been through the wringer. I often wonder how have I survived into middle age. I never thought I would turn 21 years of age much less settle comfortably into my 50s. I survived three massive spinal cord surgeries as a teenager, dozens of spinal taps and countless medical procedures as a child, a stage four wound on my hip, and a heart attack. This cavalcade of medical woes has not diminished the feeling that my body has exceeded my wildest expectations. Whereas typical others see pathology and the medical industrial complex seeks to cure me, I feel victory. I have survived and lived and loved and worked and enjoy each and every minute of the day. More than many, I know life is a gift--one that is all too short. I know people don't want to know my reality. They take one glance at me and know everything. Assumptions are made, expectations are non-existent. My competence is open to question. Can I cross the street by myself? Can I get in and out of a car and drive? Can I have sex? The bar is set very low when one uses a wheelchair. My visceral experience living in a dysfunctional body is dismissed by most. When I point out that my body has adapted marvelously this observation is instantly dismissed by healthcare professionals and society alike. When I express delight about what I can do, my efforts are reduced to nothing more than a feel-good moment or the ridiculous notion I have overcome my disability. More than once when I expressed pride in what my body can do I have been tapped on the head like a child. Some of my academic peers, especially those in bioethics, are decidedly uncomfortable in my presence. Utilitarian philosophers of the Peter Singer type think all things considered it might be better off if I were dead. Those in favor of assisted suicide find my opposition tawdry if not somehow intellectually unbalanced. I am told repeatedly not all people are capable of living with a disability. Such ableist beliefs are rampant in the academy. If you doubt me read the insightful <u>Academic Ableism</u>. In response to such ableism I am supposed to have a good-natured philosophical debate? I am not Harriet McBryde Johnson who famously and politely debated Peter Singer at Princeton University. Sorry but no. I am too old and crusty to engage in this sort of collegial exchange. I can be polite but there is a line I refuse to cross. I simply refuse to be denigrated and judged. I decry the human penchant for snap decisions and reliance on worn out stereotypes.william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com1tag:blogger.com,1999:blog-1556371561007953336.post-7257649109587627632018-05-02T15:41:00.002-07:002018-05-02T15:41:32.488-07:00David Goodall: Dying in Support of a Media Campaign<span style="font-family: inherit;">In the last 48 hours dozens if not hundreds of newspaper articles have superficially covered the pending death via euthanasia of David Goodall, an 104 year-old Australian scientist. Described as Australia's oldest scientist, Goodall wants to die. To do so, he is going to travel 8,000 miles to Switzerland because assisted suicide laws in Australia are limited to those who are terminally ill. Exit International, a euthanasia advocacy group, has created a Go Fund Me page on behalf of Goodall. The Exit International website bemoans the fact Goodall cannot end his life in Australia stating it is unjust one of the nation's <i>"oldest and most prominent citizens should be forced to travel to the other side of the world to die with dignity. A peaceful, dignified death is the entitlement of all who want it. And a person should not be forced to leave home to achieve it".</i>"</span><br />
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<span style="font-family: inherit;">Goodall himself has been repeatedly quoted in news reports. The most commonly used quotes are as follows:</span><br />
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<i><span style="font-family: inherit;">I greatly regret having reached that age. I'm not happy. I want to die. It's not sad particularly. What is sad is if one is prevented. </span></i><br />
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<i><span style="font-family: inherit;">My feeling is that an old person like myself should have full citizenship rights including the right of assisted suicide. </span></i><br />
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<span style="font-family: inherit;">To be perfectly clear: Goodall is not objective nor am I. Goodall has been a member of Exit International for over two decades. He is good friends with the controversial founder of Exit International, Philip Nitschk. In sharp contrast to Goodall, I am opposed to assisted suicide. I am also a Board Member of Not Dead Yet, a grass-roots organization opposed to assisted suicide and euthanasia. The difference between myself and Goodall is that I am above board with my association with Not Dead Yet and views on end of life. Many newspaper articles fail to mention Goodall is a long time member of Exit International and advocate for assisted suicide and euthanasia. Almost all newspaper articles fail to discuss the fact the Goodall's desire to die is as much about advocacy as it is about his death. Goodall's impending is in reality a carefully crafted media campaign in support of euthanasia and assisted suicide pushed by Exit International. My first thought when I read about Goodall was this is an Australian twist on the Brittany Maynard media campaign orchestrated by Compassion and Choices in 2014. For those unfamiliar with Maynard here is a link to Wikepedia: <a href="https://en.wikipedia.org/wiki/Brittany_Maynard">https://en.wikipedia.org/wiki/Brittany_Maynard</a> </span><br />
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<span style="font-family: inherit;">The newspaper stories about Goodall uniformly support of his desire to die. The stories are puff pieces--the sort of human interest stories mainstream news outlets churn out on a daily basis. For example, a story in the Boston Globe began as follows:</span><br />
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<span style="font-family: inherit;"><i>Champagne bubbles danced in fancy glasses and birthday candles burned atop a cheesecake marking 104 years of a long and accomplished life. David Goodall listened quietly as his loved ones started to sing. Then he took a breath, made a wish, and blew out the candles. </i>Link: <a href="https://www.bostonglobe.com/news/world/2018/05/01/scientist-just-turned-his-birthday-wish-die/kSl68UbczXxQIMtLOBHuNL/story.html?event=event25%3Fevent%3Devent25#comments">https://www.bostonglobe.com/news/world/2018/05/01/scientist-just-turned-his-birthday-wish-die/kSl68UbczXxQIMtLOBHuNL/story.html?event=event25%3Fevent%3Devent25#comments</a></span><br />
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<span style="font-family: inherit;">I never cease to be amazed by the never-ending stream of stories that praise and support those that want to end their life via assisted suicide. I am equally puzzled by the way end of life is routinely framed as a human right. I read again and again about people who want to control the circumstances of their death. We already have that right and, more to the point, death is not a right but rather a biological certainty. Any and all medical treatments can be accepted or declined. Any person can deny medical treatment that will result in the end of life. Hospice care can and is often provided. For zealots, VSED (Voluntary Suspension of Eating and Drinking) is a legal way to end one's life. I see no reason for legislating end of life legislation in the form of assisted suicide.</span><br />
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<span style="font-family: inherit;">My opposition to assisted suicide makes me decidedly unpopular if not a threat to others personal autonomy. Somehow in opposing assisted suicide I am imposing my will and beliefs on others. Even polite criticism is met with the harshest rebukes. Opposition to assisted suicide is somehow seen as in bad taste--a characteristic of an unreasonable person. When I state my opposition to assisted suicide people are perplexed. Why they wonder would anyone be opposed to assisted suicide? Do I want people to needlessly suffer? Am I a heartless uncompassionate person? Some people become confrontational and nasty. I have repeatedly heard others tell me "<i>Just because you want to live with a disability does not mean others want that life".</i> Unsaid is the assumption my life is miserable and less valuable. Also unsaid is that I must be leading a life filled with pain and misery. Nothing could be farther from the truth.</span><br />
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<span style="font-family: inherit;">Given the cloak of anonymity, the real daggers come out for those that dare oppose assisted suicide. Death is a human right and disability is used to justify assisted suicide. Here I want to delve into the comments section in the Boston Globe article linked above. </span><br />
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<span style="font-family: inherit;">In the comments section one finds the following:</span><br />
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<i><span style="background-color: white;"><span style="font-family: inherit;">I know that when my mother lost the ability to read because of failing eyesight, a certain pall entered her life. Born in 1903, she was the oldest of thirteen (eight of whom survived), a woman with a sixth grade education who left school in order to help care for siblings. She was not a renowned scientist who derived what pleasure was left in his life by continuing to teach. Loss of sight, loss of the ability to securely move and loss of a sense of usefulness can certainly result.</span></span></i><br />
<i><span style="background-color: white;"><span style="font-family: inherit;"><br /></span></span></i>
<span style="font-family: inherit;"><span style="background-color: white;">When one commenter had the audacity to note the elderly were devalued and the article was a tragedy others responded with force.</span></span><br />
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<span style="background-color: white;"><span style="font-family: inherit;"><i>Preventing by law anyone who is rational from making the decision to abridge his pain or shorten the dying process IS THE DEVALUING of the value of the individual....His life belongs to him and if he wishes to avoid another few years of disability that SHOULD BE HIS CHOICE. Do gooders saying he should be deprived of that choice and placed in a nice nursing home to be spoon fed...THOSE are the people devaluing this old man's value and standing as a rat</i>ional individual.</span></span><br />
<span style="background-color: white;"><i><span style="font-family: inherit;"><br /></span></i></span>
<span style="background-color: white;"><i><span style="font-family: inherit;">you know what is MORE "devaluing"? Letting this man, against his own will, mind you, slowly decline into decrepitude, into being an invalid. THAT is devaluing his life more than anything else. You want to be respectful of the "value" of older people in society? Then treat them like cogent adults and respect THEIR wishes how they want to move on.</span></i></span><br />
<span style="background-color: white;"><i><span style="font-family: inherit;"><br /></span></i></span>
<span style="background-color: white;"><i><span style="font-family: inherit;">It is not about society, it is about ourselves. It is not about devaluing people who are elderly, it is about human existence and human choice which the government or church has no right to impose upon. This was not "an utterly tragic article", it was illuminating in helping people to be educated and be more informed in why some people may choose to die rather than live.</span></i></span><br />
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<span style="font-family: inherit;"><span style="background-color: white;">Aside from being blind using a wheelchair also justified assisted suicide.</span></span><br />
<span style="background-color: white;"><i><span style="font-family: inherit;"><br /></span></i></span>
<span style="background-color: white;"><i><span style="font-family: inherit;">he should be able to die now if he chooses to and not spend his last short time in a wheelchair, wearing a bib, Depends, and drooling into his lap.</span></i></span><br />
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<span style="font-family: inherit;">Depression is dismissed out of hand:</span><br />
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<i><span style="font-family: inherit;"><span style="background-color: white;">He doesn't sound depressed, he sounds totally rational and reasonable to me.</span><br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" /><span style="background-color: white;">You have outlived everyone you love, you don't have the physical ability to go or do, people treat you like you're mentally incapacitated, and you're not enjoying your days. It's up to you to decide you're over it, not the government.</span><br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" /><span style="background-color: white;">It's ridiculous that he has to go to 8,000 miles to end his life. Sweet dreams!</span></span></i><br />
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<span style="font-family: inherit;">In a comment that questioned the need for assisted suicide a person replied:</span><br />
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<span style="background-color: white;"><i><span style="font-family: inherit;">That's fine that you have your own opinions but don't try to label those that wish to have doctor services for dying with compassion...We simply have compassion for those who desire to die, you, on the other hand, want to judge others who you have no idea about...Why do you have to be so brutal with people you don't agree with?</span></i></span><br />
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When it comes to end of life people in my experience either ask all the wrong questions or do not ask any. I understand this to a degree. Americans are scared to death of dying. Too many die in nursing homes or hospitals. Our health care system does a dreadful job at managing death with grace and dignity for all involved. Here is what the average perosn fails to realize. In the words of Ira Byock, Director of Palliative Medicine at Dartmouth-Hitchcock Medical Center:<br />
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<i>In truth, my colleagues in hospice and palliative care represent the most genuinely Pro-Life segment of American society. An unwavering affirmation of life leads most of us to oppose legalizing assisted suicide and euthanasia. But it is not about politics. It is simply that love of life--not in the abstract but love for the people we care for as patients--is the reason we do what we do. People who work in this field understand that to truly affirm life, one needs to affirm all of life--and that includes the part we call dying. </i><br />
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Affirmation of life. All life. I, a severely disabled man, have a life worth living. This is not about politics. This is not about religion. This is not about imposing beliefs on others who feel differently. The dying have a right to live a good life until that is no longer possible. This is waht se should be talking about. <br />
<br />william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com1tag:blogger.com,1999:blog-1556371561007953336.post-51968881435520443632018-04-27T10:42:00.001-07:002018-05-02T17:20:28.671-07:00Academic Ableism at Syracuse and BeyondYesterday I read a hard-hitting email sent to Syracuse University faculty listserv written by Stephen Kuusisto. My first thought was this will not be well received by faculty and administrators. What Kuusisto wrote was direct and briefly outlined why Syracuse is a hostile environment for students and faculty members who have a disability. In response to his email, today Kuusisto wrote:<br />
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<i>Because racism, ableism, homophobia, misgogyny are rampant right now at Syracuse University (the story broadly told) I feel unwelcome on campus. I’m blind and have struggled to get basic accommodations as a faculty member for seven years. When I speak about this I’m largely treated to double talk. It’s too hard for this university to make books and articles accessible in a timely way. It’s too hard to assure that sighted support is available to the blind. I’ve been told these things and if I’m hearing them I can only imagine what disabled students are experiencing. Except I don’t have to imagine. They tell me. They tell me over and over what a mean spirited place SU really is.</i></div>
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<i>Yesterday I was told to be quiet. My mistake? I posted a cris de coeur about these problems on a departmental listserv. I was told that my opinions offended people.</i></div>
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<i>That’s of course how ableism works. It offends the ableists to know they’re part of a structural system. They think themselves liberal, progressive, tolerant. Blaming the disabled for calling attention to the problem is Ableism 101.</i></div>
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<i>I said I’d never post to the departmental listserv again.</i></div>
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<i>But I won’t stop talking about the ugliness of higher education and disability discrimination. I won’t.</i> Link: <a href="https://stephenkuusisto.com/2018/04/27/7712/">https://stephenkuusisto.com/2018/04/27/7712/</a></div>
If there is one trait Kuusisto and I share as pre ADA cripples it's that we came of age before the law was on our side and as a result we are persistent. Neither Kuusisto nor I will ever give up. He and I and others will relentlessly bang at the front door of academia and push for inclusion. I, for one, cannot stop. I will not give ableist bigots the satisfaction of winning. But the point must be made that academic ableism is not limited to Syracuse University. Academic ableism is rampant at every higher educational institution in the nation. The veritable Ivory Tower looks down upon those with a disability that want to receive an education and those who want to teach, write, and research.<br />
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My liberal hard-working nondisabled colleagues will disagree with the above. As Kuusisto wrote, they will even be offended! If we are going to talk about offensive let's get to it. I have had the following experiences in the hallowed halls of academia.<br />
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Last summer I was a seminar leader in a bioethics intensive program at Yale University. There was no accessible bathroom in the building where we met. I had to dehydrate myself daily. The nearest bathroom was two blocks away. To enter the building the automatic door opener was broken. It took a week to repair.<br />
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At Syracuse University I requested a handicapped parking permit to park on campus. It took over a year to process my request.<br />
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To get the above parking permit I had to go to the parking permit office. The wheelchair lift was filled with office supplies and trash. The lift was also blocked by a large plant that had not been moved in quite some time.<br />
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Again, at Syracuse University I tried to attend a lecture by a guest speaker. The large auditorium was "minimally accessible". The wheelchair lift to access the only accessible seating area was filthy. Handicapped seating was filled with office supplies and trash. Unwilling to sit in filth, my colleagues smiled and waved to me as they walked into the auditorium.<br />
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I was invited to attend an academic conference on disability and the health care system at Hobart and William Smith Colleges. The entrance to the conference was not accessible. Organizers and participants posted a picture of themselves standing on the steps. Link: <a href="http://badcripple.blogspot.com/2013/11/an-unexpected-humiliation-at-conference.html">http://badcripple.blogspot.com/2013/11/an-unexpected-humiliation-at-conference.html</a><br />
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At an unnamed university where I was teaching I walked across campus with a colleague who bitterly complained that the campus was "<i>over-run with students who had a learning disability"</i>. This colleague bitterly noted he was forced to give these students extra time on exams. The person felt this was an unfair advantage and told me not everyone was college material. When I pointed out elevators and ramps were expensive modifications the person told me "<i>that is completely different".</i><br />
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At Purchase College I was assigned to teach in a non-accessible classroom. When I called to move the class I was told it was not possible. Apparently it was <i>"impossible to meet the preferences of every professor on campus". </i> The not so subtle message was my request was entirely unreasonable.<br />
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I gave an early evening talk at Cornell Medical School. When my colleagues and I tried to leave all the accessible bathrooms and exits were locked.<br />
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Academic meetings are grossly inaccessible. Podiums are designed for a speaker who stand and stages have steps. I have had dozens of talks delayed or canceled outright. Any time I give a talk I am forced to exchange dozens of emails to be sure the podium is accessible.<br />
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I have been invited to dinner dozens of times by colleagues at inaccessible restaurants and venues. Plans are not altered and I am not included.<br />
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I gave an informal talk about ableism in health-care settings at a prestigious bioethics center. The founder of the center commented that "<i>it was so nice I could make a career out of being disabled".</i><br />
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The short list above merely notes a few inclusion failures. My point here is not to bash my colleagues. I have had many wonderful experiences and some people have bent over backward to insure my participation. Yet, no one asks the all important why. Why does it take maximum effort to get the most basic accommodations nearly 30 years after it was legally required? Why is it that administrators bitterly complain about the cost of inclusion and routinely refuse to hire ASL interpreters and provide CART? Why after 25 years of teaching am I always the sole wheelchair using professor on campus? Where are my disabled colleagues? Why is online material so difficult if not impossible to access for blind people? Why did Syracuse purchase Orange Success software knowing it was not possible to access if you were blind?<br />
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I do not like to upset people. I wish I did not have to fight a battle every time I try to attend an academic meeting or teach on campus. But battle I do. And yes I upset a lot of people. In fact, it seems to me the only way to make change is to upset others. I truly hate to acknowledge that the Syracuse campus is a toxic and unwelcoming environment for students and faculty members with a disability. I had great times at Syracuse University--the highlight by far giving a talk at "Cripping the Comic Con" in 2014 in full zombie make up. It was a moment I will forever cherish. I have routinely had positive experiences at the Hastings Center whose researchers have treated me with the utmost respect. Joseph Finns, former president of the ASBH, has gone out of his way to help and support me. Indeed, many former and current colleagues have enhanced my life. Yet none of this has made my life in academia easy. It has been a long hard road. I have paid a heavy price for my career choices. I remain poorly paid and largely unwelcome. This is a hard truth many of my non-disabled peers refuse to acknowledge. Like Kuusisto I refuse to be quiet. If people are uncomfortable with this I am sorry but I will not be silent. Silence leads to isolation and exclusion. I will not let that happen. Like I already said, I will not give the ableist bigots the satisfaction of giving up.william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com1tag:blogger.com,1999:blog-1556371561007953336.post-63134698396426423382018-04-26T17:16:00.000-07:002018-04-26T17:16:16.577-07:00Arrests: Past and PresentI have never been arrested. I have avoided arrest for my own physical safety and a more personal reason--any arrest would have deeply upset my parents. My desire not to get arrested however does not mean I was unwilling to push the envelope. Immediately after I was paralyzed in 1978 I got a crash course on stigma before I read the work of Erving Goffman. I was miserable those first few years of paralysis. I was not miserable because I was paralyzed, I was upset with my social fall from grace. I went from being the heroic sick kid to medically stable paralyzed man trying to navigate a hostile world. No more would I be able to attend a concert, sporting event, or any large public gathering without calling a special number and be relegated to the worst seat money could buy (that is if I could even enter a venue).<br />
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I did not react well to being stigmatized. I pushed back and did so with vigor. This won me no friends. Indeed, I was failed miserably at being the subservient cripple I was expected to be. The notion of disability rights did not exist and I was thought to have "a cripples disposition". The result was I got kicked out of more than a few baseball stadiums, hockey rinks, and concert halls because I let organizers and ushers know handicapped seating was unacceptable. This has been on my mind because I am not sure much has changed. Prejudice and social isolation people with a disability experience today is different. I tried to do the ordinary on gorgeous Sunday afternoon here in Denver--go to a baseball game at Coors Field (the stadium is accessible). I looked for tickets online at StubHub and the Coors Field box office. StubHub had about 3,000 tickets available the morning of the game. When I put the filter "handicapped seating" on the search engine tickets available went from 3,000 to zero. The same thing happened at the Coors Field website. About 2,500 hundred seats were for sale. When I applied Coors Field "semi-ambulatory" filter no seats were for sale. Simply put, there are softer means of exclusion that are quite effective these days. <br />
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Another reason I have not been arrested is because in the 1970s it was simply unacceptable to arrest a person using a wheelchair. The visual of police officers arresting a wheelchair user was not something the general public was prepared to accept. I know this to be true because I was almost arrested at Yankee Stadium in the fall of 1978. I was a college student and had attended a few Yankee games. The Yankees made the World Series and my father got me tickets to the series. When I showed up to the stadium the lousy area that had once been designated "handicapped seating" was filled with television cameras. There was no handicapped seating and the usher suggested I either leave or watch the game from a stadium bar. The cameras I was told were not going anywhere. In anger I went over to one of the expensive television cameras and tipped the tripod over. The camera smashed and broke. I was immediately surrounded by angry television people and ushers who called the police. The police showed up in seconds. I was put in handcuffs and the police escorted me out of the stadium. Two weary New York City police officers were not impressed. As soon as we got out of the stadium one cop said "<i>What the fuck am I supposed to do with you? The precinct is not accessible. I am not going to take you to Rickers Island. If I bring you in I will never hear the end of it." </i>With that short profane soliloquy he took off the handcuffs and told me "<i>Get the fuck out of here. But if you come back I swear to God I will figure out how to arrest you"</i>. I took this officers advice. I vowed to never return to Yankee Stadium and always root against the team. <br />
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Much has changed since 1978. The police have no qualms about arresting people that use wheelchairs. Indeed, wheelchair dumping is not uncommon. Link: <a href="https://www.sfwar.org/pdf/SurvWDisab/SD_CPunch_2_08.pdf">https://www.sfwar.org/pdf/SurvWDisab/SD_CPunch_2_08.pdf</a> The visuals of arresting people that use a wheelchair remains socially and symbolically significant. To this day, our penal system is ill-equipped to provide the most basic reasonable accommodations to people with physical disabilities that get arrested. Remarkably, people with a disability had to fight for the right to be arrested. This seems strange at first glance. However, John Holland (an important Denver based disability rights lawyer), pointed out after the first Gang of 19 protests that it is impossible to have a civil rights movement if you cannot get arrested. Let me explain how this came about. Only July 5 and 6th 1978 the Gang of 19 brought traffic to a standstill in Denver when they surrounded two RTD buses at the intersection of Colfax and Broadway. This intersection is the epi-center of bus traffic in the city. The protest did not appear out of nowhere. A good history of this event and the inception of ADAPT was done by Rachel Maddow last year. Link: <a href="https://www.msnbc.com/rachel-maddow/watch/gop-threat-to-medicaid-threatens-liberty-of-millions-of-americans-974159427845?playlist=associated">https://www.msnbc.com/rachel-maddow/watch/gop-threat-to-medicaid-threatens-liberty-of-millions-of-americans-974159427845?playlist=associated</a><br />
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RTD had been negotiating with the Atlantis community for more than a year about expanding accessible bus service. In 1978 RTD Denver purchased 254 buses--none were equipped with wheelchair lifts. RTD had just 12 buses with wheelchair lifts to transport an estimated 6,000 residents who used wheelchairs. The July 1978 protests were unlike any past disability rights actions. Imagine the scene: 75 to 80 wheelchair users surrounded two RTD buses during the morning rush hour and brought traffic to a standstill. Police and RTD officials had no idea what to do. The idea of arresting a person using a wheelchair was unimaginable. The police did not want to be the fall guys as the optics were terrible. On the second day the police had to do something. Some proposed deputizing ambulance or EMS employees and taking protesters to the local hospital. One thing was clear though: no person using a wheelchair would be arrested. Instead, attendants working with the protesters would be arrested. John Holland took the city to court and argued arresting the attendants and not the protesters was an equal protection violation. Holland brought the Gang of 19 and all protesters to the court in what must have been quite the scene. Holland argued the police conspired to arrest able-bodied attendants. This, he argued, violates the constitution because they are selectively enforcing criminal law. All charges against those arrested were dismissed. While municipal violations are not typically important the dismissed charges were significant. People with a disability proved they could and would be arrested.<br />
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Today, the police are very good at arresting people that use wheelchairs. In 2017 the police got plenty of practice arresting people with a disability who staged protests against GOP cuts to Medicaid. Like 1978, the visuals of a person being dragged from their wheelchair, carried out of buildings, or with handcuffs on remain visually striking.<br />
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Each time I see these photographs I shudder. I shudder because long hours of fruitless negotiating took place well before arrests were made. Ableism can be a brick wall and in response groups like ADAPT play hardball. Confrontational disability advocacy brokers no deals. There are no grey areas or compromise. I get this at my very core. For much of my life nondisabled others have repeatedly told me they have my best interests in mind. When I hear this line I know I am screwed. Equal access need not involve a longwinded story. The answer is black and white--when asking about access the answer is a simple yes or no. We people with a disability are not in any way shape or form special. Our so-called "special needs" are not special at all. We people with a disability want to do the ordinary. This is why I chuckle every time I come across a Denver Public Library exhibit about the origins of the disability rights movement. ADAPT had a wonderful bumper sticker as part of it "We Will Ride" campaign.<br />
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william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com0tag:blogger.com,1999:blog-1556371561007953336.post-1840801834161512792018-04-25T08:48:00.001-07:002018-04-25T08:48:15.607-07:00More on the Syracuse ScandalI have continually noted that ableism is part of the social fabric of society. Ableism surrounds us on a daily basis and it is impossible to escape its tentacles. People unfamiliar with disability don't get it. Few people are even familiar with the word ableism. Fewer still could define what ableism means. The social ramifications are profound and deadly. Disability based prejudice exists and is not examined. Disability based oppression goes unchecked. Life for people such myself, a wheelchair user, is needlessly difficult. The ordinary is impossible. The psychic toll this takes is immense. Every day is a battle. Battles can be large and small. Nothing is ever easy because disability rights is always subsumed by media representations of disability that are antiquated and dehumanizing. Stories of overcoming disability and cure narratives are rampant. Stories about disability rights are absent in the media and not taught in secondary schools and universities. When I teach about disability history and disability based oppression students are often shocked and ask me "why have I never heard about this?" The answer is simple and depressing--no one cares--that is until disability enters one's life.<br />
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The situation at Syracuse deeply saddens me. An ugly incident was bound to happen. I could feel it coming. I never could have predicted the form it has taken but the undercurrent of anger and hostility was readily apparent. The administration I am sure is shocked by what took place. To me, this highlights the ablesism on Syracuse campus and well beyond. Academia is hostile to the presence of disabled students and particularly faculty members with a disability. If you doubt me please read the ground-breaking book <u>Academic Ableism</u>.<br />
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Pre ADA cripples such as myself who came of age before the law was on our side are familiar with hatred. I have been spit on for having the nerve to get on an MTA bus in New York City. I have been refused service in restaurants (no wheelchairs). I have been denied boarding on airplanes because I was deemed a flight safety risk. I have been mocked on the streets. I have been denied health insurance. Strangers have suggested I should just die. A physician once offered me assisted suicide. The list of civil rights violations I have been subjected to is lengthy. <br />
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Ableism and hatred go hand in hand. The Theta Tau videos amply illustrate the hatred we people with a disability encounter on a daily basis. Today Stephen Kuusisto wrote:<br />
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<i><span style="background-color: white; caret-color: rgb(55, 55, 55); color: #373737; font-family: lemonde-journal-1, lemonde-journal-2, serif; font-size: 16.799999237060547px;">Now I’m an old hand at hate. Disabled, bullied in childhood, discriminated against in education and employment, I’ve lived a long time in hate-ville. Here’s the thing: able bodied white people don’t understand that if you’re from a historically marginalized background you have to put yourself together anew every day. I don’t mean putting on your makeup or shaving. I mean a full scale, internal, hot to the touch assembly of hope, aspiration, belief in the future, and a reserve of irony—you’ll meet people who don’t get you all day long and you’ll manage them with humor, forceful insistence, passion, and compensatory self-regard. Able-bodied white people don’t need to do any of this. The worst thing they can imagine is a bad day in junior high.</span> </i>Link: <a href="https://stephenkuusisto.com/2018/04/25/hate-at-the-university/">https://stephenkuusisto.com/2018/04/25/hate-at-the-university/</a><br />
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The life of people with a disability is unimaginable to your ordinary able-bodied white person. They often shudder as we cripples go by. Some are openly hostile. Others only express their views behind closed doors when we cripples are not present. What is one to do? I for one maintain this blog (it is a labor of love). I teach. I write. I research. I advocate. All this feels inadequate. I struggle with the sense of helplessness to make significant social change as I do not want any person to experience what I have had to endure.<br />
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What can be done at Syracuse? I urge readers to take 15 minutes and listen to what Diane Wiener has to say about the crisis and scandal at Syracuse University. She is more optimistic than I am and gives me hope Syracuse University can indeed transform into an inclusive campus--a campus where even I might be welcomed.<br />
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<br />william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com0tag:blogger.com,1999:blog-1556371561007953336.post-89975050783837022892018-04-24T10:07:00.002-07:002018-04-24T10:07:23.743-07:00Syracuse University Scandal<span style="font-family: inherit;">In the last week multiple people have asked me to comment about the scandal at Syracuse University. I have refrained from writing about the shocking videos released by Syracuse University Daily Orange--the student newspaper. For those unfamiliar with what has happened, two videos of the engineering fraternity Theta Tau were exposed that depict intersectional bigotry. The crass and offensive behavior in the first video did not surprise me. The homophobia, racism and dehumanizing behavior depicted behind closed doors is indicative of the unwelcoming social environment on campus. During my three year tenure at Syracuse University I was made to feel deeply uncomfortable (any reasonable accommodations requested were met with stiff resistance and extended delays). When I left the university I simply I could not tolerate the hostility directed to people with a disability and other minority groups on campus. The social and intellectual environment was toxic. </span><br />
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<span style="font-family: inherit;">The first video exposed was without question horrific. However it was the second video that has prompted me to write because it was far worse than the first. I refuse to embed the video in this post. It is too upsetting and vile. Since its release I have had nightmares every night and do not want to risk hurting others. However, I will provide a link to a Washington Post news report on You Tube. Be forewarned, the video is triggering and displays hatred under the guise of "humor" and I can only presume a "boys will be boys" attitude. Link: <a href="https://www.youtube.com/watch?v=Zdj16cqOxdg">https://www.youtube.com/watch?v=Zdj16cqOxdg</a> </span><br />
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<span style="font-family: inherit;">To date, the university is doing it's best to handle this crisis. I have no doubt a crisis team has been formed and Chancellor Syverud has tried to address the repercussions and the national press it has garnered. Nothing Syverud has publicly stated has impressed me. I am not sure anything the man says or does can help the situation. I have followed this story as closely as possible and only two people have offered true insight--Diane Wiener (Director of the Disability Cultural Center) and Stephen Kuusisto (professor and poet). In response to the scandal, Wiener eloquently wrote: </span><br />
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<i>At Syracuse University, and in the City of Syracuse, we have a proud and long history of disability rights being at the heart of political work. In what is an anathema to all that disability activists have striven for at Syracuse and elsewhere, Theta Tau’s video is not only a representation that demeans, dehumanizes and objectifies disabled people, it does so by utilizing toxic masculinity, homophobia, racism and other forms of systemic oppression and violence to accomplish its strategy, hiding behind the false narrative of “humor,” and “boys will be boys.”</i></div>
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<i>Disabled people are not to be pitied; disability is not a devastation that needs to be cured and about which triumph and shame are the necessary or desired aims and outcomes. Yes, some individuals are ashamed of their disabilities, and others would just rather live differently. Some people do not want to be known as disabled, or might prefer only to be called Joe, who happens to have a disability, but disability is not the entirety, let alone the center of Joe’s life. There is no monolithic disability perspective or experience. Some would assert that shame and stigma around disability reflect internalized oppression, highly understandable in a world that was and remains often not built or shaped for us, the same world that has often feared, ignored, dismissed and even, in some cases, killed us.</i></div>
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<i>Disability identity is comprised of a nuanced and variegated set of realities, existing always within and enhancing the workplace, interpersonal relationships, scientific discovery, arts and culture and, of course, the university, among other spaces and landscapes, geographic, political, social, virtual.</i></div>
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<i>Rape culture and locker room talk will never be tolerated at Syracuse University. Ableism and other forms of interlaced oppressions must be denounced and undermined.</i></div>
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<i>We have a lot of collaborative work to do. And, we will continue the labor.</i></div>
I am not sure how effective Wiener's words will be. The labor as she puts it to me is overwhelming and depressing nearly thirty years post ADA. Yet, the sort of hatred spewed by members of Theta Tau's are something people with a disability deal with on a daily basis. I know this to be true because Syracuse students sought me out on a regular basis. They told me of university wide failures to provide the most basic accommodations. Stories of harassment abounded. I too was harassed on campus and on the streets of Syracuse. When I walked to the bus stop my last year in the city it was not uncommon to be called a "retard" by strangers and mocked. <br />
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Who is to blame for the scandal? Not the many fine people I know who still work at Syracuse University. Today Stephen Kuusisto wrote that the Theta Tau videos were a "wake up call". Here Kuusisto is being polite in the extreme.<br />
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<span style="background-color: white; color: #373737; font-family: lemonde-journal-1, lemonde-journal-2, serif; font-size: 16.799999237060547px;"><i>This morning walking my guide dog I thought “maybe a more representative motto for the university should be “Buildings Over People” as opposed to our current motto “knowledge crowns those who seek her”?” We’re great at putting up buildings that show us in the best light. We have “Ernie Davis Hall” but guess what? Ernie Davis’s developmentally disabled son was rejected from SU. We have a multi-million dollar Institute for Veterans and Military Families going up on the site of the former Disability Studies Program’s building. We dispersed the disability faculty across campus without a place to meet. Meanwhile veteran-students have related to me their disappointment at SU, remarking that the campus is an unwelcoming place. This is what I think is most central to our dilemma and which only the Board of Trustees can address: SU is not and I repeat “not” a welcoming institution for veterans, the disabled, people of color, LGBTQ students and staff, foreign students, women, it’s a long list</i>. Link: <a href="https://stephenkuusisto.com/2018/04/24/syracuse-university-is-in-a-jam/">https://stephenkuusisto.com/2018/04/24/syracuse-university-is-in-a-jam/</a></span><br />
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The list is indeed long and I would add depressing. Syracuse is a grim decaying city in the grips of poverty and despair. As the city crumbles, Syracuse University builds beautiful building for beautiful people. Cripples need not apply. People of color need not apply. LGBTQ students need not apply. Any person who is in some way different is not welcome and their presence will begrudgingly be tolerated publicly. But behind closed doors at a university that severely struggles with transparency<br />
a radically different narrative emerges. That narrative is dark and ugly. We caught a glimpse of it in the Theta Tau videos. Back to Kuusisto:<br />
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<i>Buildings over people is the proper latinate maxim for us. I believe the Trustees bear more than a little responsibility for this situation. So keen are they to cut budgets and put the university on a strict business model management system they’ve forgotten that the buildings don’t mean a thing if the people feel disparaged, maligned, under served, ignored, and of little value.</i></div>
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<i>I’m a disability rights activist among other things and I’ve been asked by students and faculty to weigh in on what’s going on here and I’m trying hard to be measured. Syracuse is a good university with lots of great people. We must reaffirm what’s good here and resist what’s deleterious about our community. We need to do this with brave leadership and a true commitment to change. Buildings and heated sidewalks and underfunded resources in community services and academic programs won’t cut it.</i></div>
I agree with Kuusisto--Syracuse is a first class educational institution. Many fine people work hard to make the campus a welcoming environment. When I think of Syracuse University I think of people like Diane Wiener, Stephen Kuusisto, Michael Schwartz and others who tirelessly champion the rights of marginalized people. But I also bemoan the way universities are now run. A university is not a for profit enterprise and should not be operated like a business where the bottom line reigns supreme. People like Bruce Harreld have no place running the University of Iowa. Many such businessmen run universities these days much to our detriment. So like Kuusisto, I think the Board of Trustees and the Chancellor bear a great deal of responsibility here. The Theta Tau videos did not emerge from a social vacuum. Campus wide hostility toward marginalized people is a real problem and all the lovely photographs of campus are not going to change that fact. Leadership is required and it is past time for faculty to assert themselves. They are, after all, the people charged with educating the members of Theta Tau. Who knows, perhaps one of the men in the fraternity was in my classroom--a thought that makes me shudder. william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com0tag:blogger.com,1999:blog-1556371561007953336.post-25918898735266737652018-04-17T13:07:00.001-07:002018-04-17T13:07:34.059-07:00Road Races: The Bad Old DaysI continue to go through Denver Public library archives about the disability rights movement in Colorado and beyond. It strikes me as shocking how recently blatant disability based discrimination was accepted as the norm. I lived a good bit of this history and experienced significant discrimination as a young man. I recall being turned away from multiple airlines because I was deemed a "flight safety risk". I was spit on when I tried to get on New York City MTA buses when lifts were being introduced in the early 1980s. I had cab drivers in New York City refuse to stop for me on a regular basis. I have encountered inaccessible elevators to subway systems nationwide. I was once taken out of Yankee Stadium in handcuffs by the police who had no idea how to arrest me in 1978.<br />
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Pardon me if I do not wax nostalgic about the olden days. The olden days were ripe with disability based discrimination. Lives, careers and dreams were shattered on a regular basis. I came of age before ADAPT and well before legislation existed to empower people with a disability. I was continually barred from participating and attending many public events in New York City where I came of age in my 20s. Concerts at Lincoln Center or sporting events at Madison Square Garden were grossly inaccessible. At old Shea Stadium handicapped seating was behind a chain link fence next to barely functional toilets that stunk of urine. Using a wheelchair guaranteed the worst seat at all venues--disability was ghettoized. This was not a New York City problem--the presence of people with a disability was an affront. By the late 1970s and early 1980s we anonymous people with a disability had reached a saturation point. Countless people had enough and pushed back. I was among those that pushed back. I had it easy--I was among the 1% and privileged. Sure I encountered disability based discrimination on a regular basis but I was not fighting to get out of a nursing home. I was fighting for the right to privileged activities--going to college, graduate school, and, for a while in my early 20s, to participate in road races. I was interested in marathons. Racing wheelchairs were about to be developed. The wheelchair industry was about to radically change and adaptive sports was in its infancy. I was an early pioneer in wheelchair racing but I was truly a peripheral figure. I was an ordinary young man who simply wanted to stay in shape and see how fast I could cover some serious miles. I was not a serious athlete nor was I designing adaptive sports equipment. I wanted to be a scholar and remain in good shape. To this end, I tried to enter New York City Road Runner events. Here I hit a veritable brick wall. The founder of the New York City marathon, Fred Lebow, hated the idea of wheelchair participants. For years the NYC Road Runners club fought tooth and nail to exclude wheelchair racers. Lebow, at a notorious closed door meeting, supposedly said with ferocity that he would not allow the marathon to be turned into a "freak show". Unlike other major marathons that quickly incorporated wheelchair racers, Lebow and the NYC Road Runners Club did their level best to make the NYC marathon inaccessible to all people with a disability. Wheelchair racers were deemed a significant risk to themselves and others (a common place charge at the time). Marty Ball was among the first serious marathoners to push back. He registered to participate in the NYC marathon under an assumed name. For more on Ball see: <a href="http://www.wheel-life.org/marty-ball-lifelong-warrior-for-better-wheelchairs-wheelchair-sports/">http://www.wheel-life.org/marty-ball-lifelong-warrior-for-better-wheelchairs-wheelchair-sports/</a><br />
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I have written about the long sordid history of the NYC marathon elsewhere. See: <a href="http://www.raggededgemagazine.com/focus/26miles.html">http://www.raggededgemagazine.com/focus/26miles.html</a> Suffice it to say, it took decades for the New York City to be inclusive to elite and ordinary wheelchair racers. Much work remains to be done to this day as wheelchair athletes have continually encountered problems in NYC and other large events. As I now live in adaptive sports mecca of Denver and nearby Colorado Springs I naively thought Western states would have been far more inclusive. I was wrong. Last week I came across a story about the first Bolder Boulder Run. The first Bolder Boulder run was held in 1979. Since its inception the Bolder Boulder run has grown exponentially. It is now the premier 10k run in the nation. It is also one of the largest running events in the world (it is the 3rd largest running race in the USA and 7th largest in the world). In 1979 however just 2,700 people participated. By 1990, when the first pro wheelchair race was introduced, over 26,000 people participated. A few years ago over 50,000 participated. See: <a href="https://bb10k.bolderboulder.com/about-bb10k/bb-history/">https://bb10k.bolderboulder.com/about-bb10k/bb-history/</a> Note the year 1990--the first pro wheelchair race was introduced. Yes, it took nearly two decades for wheelchair athletes to be recognized. Like the NYC marathon, I suspect the main reason it took so long was because of the Bolder Boulder race organizer. Like Fred Lebow, Steve Bosely was adamantly against the inclusion of wheelchair athletes. After the inaugural race I read a story about Bosely: "Bolder Boulder Not So Bold When it Comes to Wheelchair Racers". Marty Ball participated and he along with many other wheelchair racers complained about multiple needless obstacles during the race. After the race, officials were angry and publicly vowed to exclude wheelchair racers from the race the following year. Among those officials opposed to the participation of any wheelchair racer was Bosley. While Bosely "<i>sympathized with the plight of wheelchair racers"</i> for unspecified logistical reasons he firmly believed they represented a risk to themselves and others. Bosley noted accidents had taken place involving wheelchair racers and they had the obligation to avoid future accidents. He petulantly noted "<i>Our staff has discussed the wheelchair issue probably more than any single issue in the last seven or eight years and we've pretty much come to the conclusion that what we're putting on is a foot race and wheelchairs have no place". </i>Bosley went on to state:<br />
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<i>First, a wheelchair racer who completes the course in 32 minutes and a runner who completes a race in 32 minutes are two completely different things. A wheelchair racer goes extremely fast--up to 35MPH on downhills--and very slow on the uphills. So a runner and a wheelchair racer who start at the same time will constantly be conflicting with each others paths during the race. Second, some of the slower wheelchair racers take more than three hours to complete the course. This causes us problems because we're on a very tight schedule.</i><br />
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This is the exact logic Fred Lebow used in NYC to effectively bar wheelchair athletes from participating. Toward the end of his life, Lebow changed his mind about the inclusion of wheelchair racers. I have no idea if Bosely had a similar such change of heart. Regardless, Bosely spent much of his life expanding and advocating for the Bolder Boulder race. As of 2017, Bosely was on the Board of Regents at the University of Colorado and member of the Runner USA Hall of Fame. Clearly, his opposition to the inclusion of wheelchair racers in 1979 did not hurt his reputation nor impede the Bolder Boulder 10k race from becoming a premier event.<br />
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While I no longer have an interest in participating in marathons or running events, discrimination at road races continues. The Paralympics continue to operate in a media vacuum and receive virtually no press. Worse, the X Games that once highly touted adaptive sports has discontinued Mono Skier X events that was quite popular. The few stories that appear in press about adaptive athletes are uniformly terrible. These serious athletes are reduced to feel good stories about "overcoming disability". Few if any Paralympians are household names. Perhaps the best know Paralympian, Tatyana McFadden, refused to participate in the Red Bull's Wings for Life Run in 2015. McFadden wrote:<br />
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<i>New rules within the Red Bull Wings of Life event stipulated that I couldn’t race in my racing chair and would be, instead, required to race in an everyday wheelchair and accompanied by a “support person.” I was both bewildered and upset. I felt it would be like asking other runners to run in flip flops.</i></div>
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<i>The goal of Red Bull’s Wings of Life program is, admirably, to find a cure for spinal cord injuries. Their efforts should be applauded and encouraged. More companies need to step up to the plate, like them, and become socially responsible.</i></div>
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<i>However, this change is inadvertently reinforcing the idea that those of us with existing spinal cord injuries are somehow less than whole persons. My injury is permanent. It has resulted in atrophied legs that I will never be able to walk on. That is the reality of how my body works. I accept this. But it does not define who I am. In the course of my life, I have discovered my own talents and abilities within the body that I have been given. I dislike the term disability, it infers I do not have ability or my abilities are somehow less than that of others. On the contrary, I have abilities others don’t.</i></div>
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<i>In addition, by creating one rule for all disabled people Red Bull is perpetuating a stereotype that people with disabilities are all the same and all need assistance — and, by themselves, are not capable of doing something like racing. Instead it should be a person’s right on how they choose to race, be it with a guide runner, prosthetic leg, everyday wheelchair or a racing wheelchair. <a href="http://tatyanamcfadden.com/redbull/">http://tatyanamcfadden.com/redbull/</a></i></div>
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Last year I had a similar the same experience. I wanted to participate in a handcycle race and a few days before the event was informed via email that any person with a disability participating using a hand cycle had to be accompanied by a support person. Here we are nearly 30 years post ADA and the infantilization of people with a disability remains firmly entrenched. Imagine if a woman was told she could not participate in a running race without a support person. Outrage would ensue. This is why I remain furious and frustrated that ableism stubbornly clings to disability. We people with a disability remain the other--always on the outside looking in--liminal in more ways than I can articulate. I for one have had it. Enough is enough. william Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.com0