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Wednesday, April 24, 2019

Worse Wound Care Woes

Despite 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.

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 Learning From My Daughter: The Value and Care of Disabled Minds. 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.

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.

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.

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:  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.

Wednesday, April 10, 2019

Wound Care Woes

I 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.

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.

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.

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 "Are you depressed?" I answer yes. The reply is "do you have any inclination for self harm?" 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 "healing a wound is tricky".

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.

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.

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.

Friday, March 15, 2019

Wheelchairs and Mobility Devices Destroyed or Damaged by Airlines

Over 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:

The first monthly report has been issued and it is an eye opener. Link: If one navigates to page 37 you will find the below chart:


page38image116201072 page38image116201632 page38image116202256

If you look closely there three asterisks. Those asterisks state: 

* 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.
**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.
***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.

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. 

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. 

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 "wow, I had no idea a manual wheelchair could be so expensive". This was most definitely a first in my life. 

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. 

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. 

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. 

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. 

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. 

Monday, March 11, 2019

Traveling 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.

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.

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 "What airline was he on and where is he going?" The woman replied "I have no idea where he is going or who he is".  The driver then looked at me and said "You should not be traveling alone". Annoyed at this point I replied "Is that a question?"  He replied "You should not be alone." Ignoring the persistent and inappropriate question I stated simply that I was going to the Hertz office.

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 "Where is he going?". Perplexed the stranger replied "I am not with him". 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: "Are you traveling alone? quickly followed by "You really should not be alone." 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.

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 "why are you traveling alone?" followed by "do you usually travel alone?" 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.

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.

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 "are you traveling alone?" 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.

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.

Wednesday, January 23, 2019

Unwanted "Help" and the Dangers of Ableism

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:

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!
A guy grabbed my wheelchair today and just started pushing me, not a single passerby helped even though I was screaming for help.

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 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:

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.

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 "let me get that door". He is standing in the doorway and I am backing away. When I politely say "I don't need help" his face turns fire engine red and he screams "I hate you bitter cripples. I was trying to be nice but no, you just shit on everything". With his diatribe over he slams the door in my face.

Last fall walking to the light rail station. I am going up a long hill when I hear a car screech to a halt. A woman jumps out of the car into traffic and runs full speed towards me. She is yelling "I will push you! Where is your care taker? You cannot be alone." We enter into a strange dance as she tries to get behind me while telling me "I will push you". After a few minutes she leaves muttering about what an ass hole I am.

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 "give the guy a break, he is only trying to help you". No I reply "he is trying to extort me and asking for $10 to push me". 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.

Getting into my car at a gas station. A stranger runs around my car and pulls the wheelchair away from me. "I will help you. Where are the wheels and how do I put them on". Essentially I enter into a tug of war over my wheelchair frame while being told what an ungrateful jerk I am.

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. 



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 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
rich and full life is dismissed as impossible or inspiring.

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. "The point is never, ever touch a wheelchair without asking". Aside from the risk of injury, the fundamental issue is consent and bodily autonomy. Berg stated "Our assistive devices are a part of our body. We aren't furniture that can be moved around." 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 
Berg, these incidents are deeply unsettling. In fact a few days after her confrontation Berg tweeted: 

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.

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. 

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". 

Tuesday, January 15, 2019

Wheelchair Update: Apex at One Year Old

My 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.