Follow Up With Delta and Questions

I had a long talk with an employee from Delta. Profuse apologies were made and accepted. I am very curious though about one thing. I was told some passengers prefer the sort of straight-back I used. I find this hard to believe. The straight-backs I routinely use when I fly all have a cushioned seat. Given the width and short duration of use I do not expect much padding on a straight-back. I do expect the straight-back to be clean and have working straps. Curious I looked for images of straight-backs and came across the below.

 
Note the complete lack of straps. Imagine this straight-back with ripped canvas and dirty and add 20 years of use. That is what I had to use. The Delta agent suggested in the future if I am unhappy with the straight-back that I could ask to speak with the conflict resolution officer and not worry about the backlash of such a request. In an ideal world this is good advice. But we do not live in an ideal world. The fact is if I insisted on an appropriate straight-back and competent assistance the flight would have been delayed. This would undoubtedly have angered the flight crew and 160 passengers. Easy advice to give, hard to actually implement. This leads me to ask readers:

1. Would any paralyzed person prefer an unpadded straight-back with no working straps for torso and legs?

2. Has any paralyzed person ever knowingly delayed a flight by insisting on straight-back with straps that work, some padding, and competent assistance?

3. In recent years has service getting on and off the plane become significantly worse?

Over the years I have worked with a few conflict resolution officers with mixed results. I have also noted that assistance on and off the plane since it has been farmed out to the lowest bidder has deteriorated. I would love to know what other people have experienced.

Unpredictable: Flying when Using a Wheelchair

I spent four days at the American Society for Bioethics and Humanities (ASBH) meetings in Atlanta. I returned to Syracuse physically and intellectually spent. Four days at an academic is too much for me. The night I got home I slept 11 hours which is extremely unusual. Flying to and from Atlanta was its usual mixed bag. Syracuse airport is small but clean. Amazingly, it is filled with employees that on the day I traveled were good at their job, polite and respectful. I got through security and boarding without a hitch. I wish I could say the same thing about Atlanta. Atlanta was terrible leaving and departing.

Arrival in Atlanta: Remarkably getting on and off the place on the flight to Atlanta was typically slow, first on last off. I find the wait upon arrival frustrating. Why are people in the back of the plane so slow departing?  Is there a party back there with free drinks? And more to the point why am I forced to wait until the plane is empty, that is every passenger departs the plane. Sorry for the aside. I get off  the plane and think all is well. My colleague and I are happy and head toward the elevator. We find a line--a long line. Atlanta airport has a single elevator for people that use a wheelchair. Yes, one elevator. The line I crankily and rudely observe is filled with people that most likely can walk a good bit and I speculate many do not need assistance. After I make this observation my colleague looks at me askance. She is correct, I of all people should have a nuanced understanding of disability. I apologize and acknowledge my comment was rude but remain deeply annoyed by the wait. I cannot help but note at least one man left the elevator line for the escalator nearby. I hope I do not sound petty. Think about my experience in terms of time. I boarded the plane first and exited last. This added about 45 minutes to one hour to my travel time. Now I have no choice but to wait for the elevator adding about 20 minutes to my travel time. I would guess in total an hour was spent in the Atlanta airport merely waiting. Sadly, I would deem this an uneventful trip.

Departure  in Atlanta: I get to the departure gate with my colleague who has experienced her first disabled travel related perk. We did not wait on the very long line TSA security line. The line appeared to be a 90 minute to two hour wait. I have been on that sort of line and it is not fun. As a result of not waiting on the security line we had time to eat, use the rest room, and get to the gate early. The usual pre-boarding starts and all appears well until I look over and see the straight-back. I have not seen a straight-back that old in more than 20 years. I regret not taking a picture of it on my smart phone. The straight-back should have been retired a decade ago. It was dirty. The canvas was badly worn and ripped in spots. The seat was not padded and had a deep depression. I was very worried I would fall through the seat when I transferred onto it. There was no strap to keep my legs on the chair (I have really long legs). My colleague thought the straight-back looked like a torture device. Getting on the plane was going to be risky and painful. I asked if another straight-back was available. Yes, but it would take a long time to find and would delay the flight. Every straight-back thanks to the Air Carrier Act is supposed to be padded. In the past too many paralyzed people have been hurt because of a lack of padding.  So there I am in Atlanta--I can risk my health and arrive home on time but in pain or assert myself and insist on a straight-back. Only one of the two men that were tasked with getting me off the plane was competent. I thus ask my colleague if she can hold my legs and protect them from injury. Frankly, I was humiliated for being forced to ask my colleague for help. Thankfully I got to my seat and transferred without assistance or trouble.

What never ceases to amaze me is the fact I would consider the round trip relatively uneventful. I arrived back in Syracuse in one piece as did my luggage and most importantly my wheelchair. I also arrived in pain. My right hip was on fire for many hours. It was like a person had a blow torch on my hip. Two very stiff drinks and a long sleep relieved my pain. But it was not the physical pain that bothers me. Why is acceptable for people that use a wheelchair to be limited to one elevator in a major international airport? Long lines waiting for the elevator are inevitable. I have no doubt this is a well-known issue. Why was a dilapidated straight-back still in service? Why was I forced to either  delay a flight or risk my health? And did I really have a choice? What if I did indeed request an appropriate straight-back? I have no doubt this decision would have been met with hostility. The fundamental issue is not the risk and inconvenience I endured. Access for people with a disability is perceived to be a "problem". The idea my civil rights were violated never crossed the mind of the airport employees.  Traveling highlights a myriad of social inequities that are deeply ingrained in American society. The airline merely takes this hostility to a higher and obvious level  I wrote a pointed email to Delta and based on the reply I may or may not file a complain with the DOJ. I asked at the time and in my email to Delta to remove the worn out straight-back from service.  I will keep readers up to date on what transpires.

An Ode to My Wheelchair

Penny Wolfson, author of Moonrise, is writing about the history of the wheelchair. I find her work fascinating. Remarkably, no definitive book about the history of the wheelchair exists. Wolfson's research is historically oriented. I find the photographs of early wheelchairs Wolfson has found fascinating. It is not the wheelchair that I am interested in. Rather I wonder what did the person think of their wheelchair.  Did they consider the wheelchair as an empowering device? The early wheelchairs I assume were made one by one with a specific person in mind. One image and person sticks out as particularly interesting. Stephan Farffler circa 1655, a German watchmaker made the first self propelled wheelchair.

Using a little imagination and adding contemporary materials the above photograph could easily be reconfigured to be a modern day handcycle. Imagine the box in front is transparent. I see no reason a watchmaker could not have a set r complex gears inside the box. Streamline the seat, lower everything to the ground and I can readily imagine my handcycle.

Today, wheelchairs are mass produced and the vast majority are poorly designed. For the last two years I have been looking for a light weight wheelchair and have failed to find something I like and can afford. I am discouraged but hopeful. I think we are on the cusp of developing radically new and improved wheelchairs. I was supposed to be in New York tomorrow acting as a respondent to Wolfson who is presenting her research at Columbia.  Below is my reply to her presentation. It might be an awkward read as I react directly to Wolfson's work.  But I still think it is worth a read. My focus is on the rigid frame wheelchair and why I am optimistic about the future.  I am very interested in what some old time crips can add to the development of rigid frame wheelchair in California circa 1980.

In September 2010 I found a huge wound on my hip. It appeared suddenly. For the first and only time in my post spinal cord injury life I had a severe, grossly infected wound. Such wounds can and do result in death. I was lucky to have survived. I spent four weeks in the hospital before I was medically stable. I was tethered to a wound vacuum for 6 months.  I did not sit up for 10 months. I was bed bound for more than a year. It took another year to recover from spending so much time in bed. This experience altered my life. After meeting with Penny Wolfson and discussing her project about the history of the wheelchair memories of my year in bed flooded back. One thought dominated: how did I survive a year without using my wheelchair?

As I write these words my life is normal--or what passes for normal when you are paralyzed. My black labrador Kate is by my side and her body is leaning against my wheel. This is a far cry from a ritual she established with me when I was bed bound. Every morning when I woke she greeted me with great enthusiasm. Tail waging, excitement coursing through every fiber of her body she let me pet her head. She then would look at me and turn her head and stare at my wheelchair. Her head would go back and forth  several times. The message was not subtle: she wanted me to get up and into my wheelchair so we could play. Sadly, I disappointed her every morning. This ritual made me miss my wheelchair. Despite being paralyzed for over 30 year it was not until 2010 that I realized my wheelchair was an extension of my concept of self. I use self here in a Goffmanesque framework. I was not the only being that was miserable. In many ways my dog and I were in mourning. The pain felt was visceral. I missed my wheelchair. I missed the power it gave me to be independent. I missed the feel of upholstery against my back. I missed pushing against the tires and the intimate knowledge I could discern with a single touch.  I missed the speed with which I could move. I missed the dirt I collected during the day on the wheelchair frame. Kate missed my tires and the smells they picked up that are utterly fascinating.

Few paralyzed people have written about the relationship between their body and wheelchair. In John Hockenberry’s memoir Moving Violations he wrote about how he felt empowered by his wheelchair on a gorgeous early morning day when crossing the Brooklyn Bridge. Simi Linton in her memoir My Body Politic wrote about her cherry red power wheelchair she named Rufus. Alice Shepperd of Axis dance company contends her wheelchair is an extension of her spine. For me, Wolfson’s photographs reinforce the human capacity to imagine and adapt. When I see the photographs Wolfson has amassed my soul is warmed. I am part of a vibrant history few know about. I feel less alone knowing others have adapted. I am just one of a cadre of strong willed individuals that has been empowered by a wheelchair. My overwhelmingly positive assessment of wheelchair use is well out of the norm. For most people, wheelchairs are a poor substitute for bipedal locomotion. A wheelchair is a thing, a product, an inanimate object. Worse yet, people associate a wheelchair with inability and physical incapacity. Symbolically wheelchair use is a sign of weakness, disability, and more than once I have heard others describe it as a portable social isolation device. This is in part why I do my best to combine scholarship and activism. Too many lives have been lost or  needlessly compromised because of mere physical difference. Frankly, I love my wheelchair--every piece of it. It is a part of me, akin to my leg or arm. I cannot envision life without it. It is a vibrant positive part of who I am. When it breaks, I am devastated--how could such an integral part of me fail. Such mechanical failures are very rare, most easily fixed. Such thoughts remind me of how I feel when I am sick. How dare my body malfunction.

My obvious and intense feelings for my wheelchair reveals a divide exists between those who use a wheelchair and those that do not. This cultural gulf is the size of the Grand Canyon. I firmly believe there is a disability culture as unique and fascinating as any other subcultural group. Not all crippled people are members--some are not happy nor do they embrace disability culture. The reasons for this are many and varied starting with the overwhelming stigma associated with disability and wheelchair use. Some of us see through this cultural bias--we understand it for what it really is--bigotry plain and simple. 

I hereby and publicly acknowledge my love for my fire engine red wheelchair with its plain black upholstery, one brake, four wheels, worn black duct tape, excellent hubs, and superb ride. How does a paralyzed person explain the connection with their wheelchair? More to the point, how does one put soul into the care and development of a wheelchair? I for one believe we need to perceive the human wheelchair relationship as a unique form of symbiosis.  I am not suggesting as transhumanists would that we merge technology and the human body. Rather I would urge people to forcefully reject the symbolic associations routinely made about wheelchair use. When good design meets disability the results are remarkable--beautiful even. But good design very rarely meets disability. In fact I would argue bad design and disability is the norm.  For many years I have wondered why can’t disability be fashionable? Why are so many products produced for people with a disability ugly design disasters? The answer to these questions are as simple as they are complex. People with a disability existence is not valued. The problem is not technological but rather social. 

The photograph Wolfson showed of Stephen Farffler’s wheelchair circa 1655 is a perfect example of empowerment and excellent design. I see that photograph and I am filled with questions about Farffler’s life and ability to adapt. The wheelchair he invented and used was a precursor to modern handcycles used by many paralyzed people today. Farffler was centuries ahead of his time and yet is largely unknown because we do not teach or value the history of disability.

Wolfson’s photographs also reaffirmed my intense dislike for Everest and Jennings, the foremost wheelchair manufacturer from the 1930s to 1980. Harry Jennings invented the first folding wheelchair for his friend Herbert Everest, a paraplegic. Unlike all other wheelchairs manufactured at the time, E&J models were made of tubular metal. The wheelchairs they made folded and were designed to fit into the trunk of a car.  This revolutionary design enabled Everest and Jennings to go out together during an era when people with a disability were simply not seen in public. The audacity and creativity of E&J original design was tarnished by greed. For fifty years the company enjoyed a monopoly on the wheelchair industry and rigged wheelchair prices. In the late 1970s the Department of Justice busted the E&J monopoly via an anti trust law suit. This is when I entered the picture as a paralyzed man in 1978. I owned a number of E&J wheelchairs when I was first paralyzed. The wheelchairs produced by E&J had not been substantially modified since 1930. These wheelchairs were ugly and antiquated. They broke down on a regular basis.

With no options paralyzed people adapted. Innovation did not come from corporations but rather a critical, though very small, mass of people in California. Between the late 1970s and mid 1980s wheelchair design and construction were revolutionized. The rigid frame wheelchair was invented. These wheelchairs were manufactured one at a time.  The rigid frame developed a cult like following. They were revolutionary in that the design was simple and made for rugged use. Early testing of the rigid frame often involved dropping the frame off the roof of a building or throwing it out of the back of a car going 60mph.  The frames did not break. Ideas were borrowed from aviation, motorcycle, and bicycle industry. What really set the rigid frame wheelchair apart was the fact they were made with a heart. That is they were designed with the user in mind. And that user was an active man or woman. A person that was going to have a typical life. 

Paralyzed people were at the forefront of development.  The wheelchairs were cheap--in 1980 they sold for $500 at most. Dozens of companies popped up on the west Coast. Most went out of business. The business model utilized was terrible. Many wheelchairs were sold at a loss. Dozens if not hundreds were given away. The man that made my wheelchair frame 30 years ago had a unique business model. A person was expected to buy not one but two wheelchairs. One wheelchair would be held in reserve by the company--ready to ship at a moments notice. At a prescribed time of year the wheelchair would also be refurbished. New paint, bearings, upholstery, and tires installed. This concept failed and the company went out of business. 

The rigid frame wheelchair caught on quick even though initially all health insurance companies refused to pay for them.  Paralyzed people knew they were life altering and somehow came up with the money. Through the wheelchair basketball community young men such as myself spread the word. In less than five years orders started to flood into the companies that made rigid frame wheelchairs. They were not equipped to handle the scale of orders received. One company, Quadra, approached E&J. They were willing to make a deal with the devil. In 1979 E&J annual sales of wheelchairs amounted to $100 million. They had the ability to handle the manufacturing of rigid frame wheelchairs.  Quadra approached E&J and a meeting was held. Jeff Minnebraker and Brad Boegel brought a number of rigid frame wheelchairs to E&J. They were enthused and explained in great detail why the rigid frame was a revolutionary design. At the time use of aeospace technology was well out of the norm. The use of quick release axles had never been used on a wheelchair. These men expected E&J would be as excited as they were. E&J executives literally laughed at them. The attitude at E&J was paternalistic. Two paralyzed men could not possibly come up with a better design than the largest wheelchair maker in the world. No offer was made and E&J continued making substandard products. Within five years of this meeting E&J would go out of business.

E&J failed because they did not value contemporary design nor did they satisfy the needs of their consumers.  They also failed because they were firmly committed to the medical model of disability. When the first rigid frame wheelchairs were manufactured a significant cultural cultural shift took place at the same time.  The first users of these wheelchairs utterly rejected to work with durable medical goods companies. Rigid frame wheelchairs were sold at bike shops up and down the west coast. Only one wheelchair dealer, Abbey Medical in Fresno, would sell rigid frame wheelchairs. Fresno’s proximity to Berkeley, the home of the disability rights movement, was an important variable.  Only one person on the east coast sold rigid frame wheelchairs. It was clear to all active wheelchair users the rigid frame design would very quickly replace folding wheelchairs. Marilyn Hamilton, a paraplegic, realized the business potential of the rigid frame wheelchair.  She bought Quadra and other  makers of rigid frame wheelchairs. She called her company Motion Designs and made the first mass produced rigid frame wheelchairs called quickies. Hamilton was a shrewd business woman who professionalized the wheelchair industry. That is they worked outside the medical model of disability and were wildly successful. She sold her company to the giant multinational corporation known today as Sun Rise Medical. Quickies continue to be sold to this day but have a terrible reputation. In fact Sunrise Medical is the modern day equivalent of E&J. 

In looking at the evolution of the wheelchair in general as Wolfson has done and the rigid frame wheelchair as I have it is my impression that empowering design, truly revolutionary change, requires a complex series of events to take place at the same time. I am particularly hopeful because a unique generation of wheelchair users are coming of age. I refer to these young men and women as post ADA cripples. This is the first generation of crippled people that have had close to typical life expectations and they will demand wheelchairs that match their lifestyle just as I did back in 1978. From a technical standpoint, we are at a cross roads as well. The introduction of light weight but strong carbon fiber materials are being used for the first time by wheelchair companies. One such design from Sweden, the Panthera X, weighs in at less than 10 pounds. It is the lightest wheelchair ever manufactured. It is also the most expensive manual wheelchair manufactured (cost exceeds $10,000).  It is my hope innovative designs such as the Panthera X is a sign of what is to come. 

My concern is socio-economic: are we as a society willing to invest in people with a disability? That is are we willing to provide people with a disability the very best and well designed empowering devices? I also worry have we replaced one disability stereotype with another? Previously we have associated wheelchair use with physical infirmity and the elderly. Now I wonder do we associate wheelchair use with sporty young people. I would argue we need to offer a wide range of choices for people that use a wheelchair. Just as we have a dizzy array of choices for chairs we purchase for our homes I see no reason we cannot offer the same unlimited number of choices for people that need to use  wheelchair. I even have a name for this concept--chairwear. Sadly, I am not that clever. Chairwear is an idea suggested by Graham Pullin that I think has great potential. 

Thinking About Assisted Suicide and What is Heard

I find the debate associated with assisted suicide frustrating. Some days I think only two views exist: those opposed or those in favor of assisted suicide. I am opposed to assisted suicide. I base my opposition to assisted suicide legislation on a detailed understanding of the issues involved. In my estimation certain populations are at risk; in particular the disabled and elderly people. I do not think all the safe guards in the world are adequate. I am not impressed by the reporting required by law in Washington and Oregon. In my opinion what is reported amounts to little more than demographic information. I do not trust lawmakers. The fact is once legalized assisted suicide advocates push to expand existing law. I find advocate groups such as Compassion and Choices slick and misleading. I could go on but the point is there are solid factual reasons to be opposed to assisted suicide legislation.

What is really needed is a national debate on end of life issues. While passion is fine we need to have a sober discussion about why people want to die. I think people with a disability are ideally suited to be prominent figures in this discussion. The reasons for this are glaringly obvious to me: it is commonplace for people with a disability to have their existence, our very humanity, questioned.  Our lives are perceived through a non disabled lens. That is we can never measure up to normal--in this context a non disabled body. This failure empowers typical people, the vast majority in the mainstream, to wonder what our lives are like. The assessment of life with a disability is not positive. In fact about once or twice a year a total stranger will without prompting tell me they would rather be dead than paralyzed. Given the lack of respect associated with disability, when we do speak out and assert our lives are indeed worth living the reaction is not positive. Hence when I read an article in the Guardian by Stella Young, "Disability A Fate Worse than Death, I was not surprised to read multiple negative comments. See: http://www.theguardian.com/commentisfree/2013/oct/18/disability-euthanasia-assisted-dying#start-of-comments Young wrote:

As a disabled person, I'm accustomed to conversations about quality of life and dignity. Specifically, I'm accustomed to assuring people that my life is worth living. I'm short statured, a wheelchair user, and I frequently have bone fractures. All the visual cues that make me "the other" are front and centre. People make all sorts of assumptions about the quality of my life and my levels of independence. They're almost always wrong.I've lost count of the number of times I've been told, "I just don't think I could live like you," or "I wouldn't have the courage in your situation," or, my favourite one to overhear (and I've overheard it more than once), "You'd just bloody top yourself, wouldn't you?".

Young goes on to note that the voice of people with a disability is rarely heard. In the rare instance a person such as Young is able to publish an article in a newspaper like the Guardian the response is emotional and often nasty.  The below comments are about what I would expect when a person such as Young states her opposition to assisted suicide.   


Seems like Stella believe her disability gives her some authority to advocate for others to endure pain and suffering just because she herself found it character building.

Why on earth does the writer make the assumption that doctors would automatically have control over the person? Why does she assume that rational people who decide for themselves how they want to live suddenly can no longer decide for themselves how they want to die?

I think the writer has massively misinterpreted euthanasia. It's not some dr going around saying 'your life sucks. We are going to terminate you.'

This is a very naive article that skips merrily over the pain and comfort people experience or know they will at some point in the future and look to assisted dying. 

Of course, open discussion on euthanasia is needed, and all voices must be heard but should we really give more weight to fear and paranoia than reasoned arguments?


I find it infuriating that disabled people opposed to euthanasia get to tell other disabled people how they must feel about their conditions, lives and deaths, but no one is allowed to tell them how to feel about them.

I do not consider my body and existence to be more or less valuable than any other human being. I have no desire to impose my beliefs on others. In opposing assisted suicide legislation I am asserting my right to live but I am far less concerned with my life than I am with the life of others--disabled others and all those others whose life is not valued. Young went on to note that: 

social attitudes towards disabled people come from a medical profession that takes a deficit view of disability. This is my major concern with legalising assisted death; that it will give doctors more control over our lives. As a disabled person who has had a lot to do with the medical profession, I can tell you that this is the space in which I've experienced some of the very worst disability prejudice and discrimination. Doctors might know about our biology, but it doesn't mean they know about our lives.

I would go further than Young. I think we people with a disability are feared. We are the one and only minority that can be joined via illness or accident. Our atypical bodies also symbolically represent the limits of medical science. Please do not talk to me about joint decision making strategies between physician and patients. Do not talk to me about informed consent. Do not talk to me about patient centered care. These buzz words are cultural ideals we aspire to reach. I am not suggesting we do away with these concepts. They should be valued. But my reality, my experiences when I try to access health care is radically different. Young quotes Marilyn Golden, a long time opponent of assisted suicide who perceptively observed: "we are asking the wrong questions when it comes to assisted death: We have to ask, do people with disabilities have true choice and self determination, in terms of living outside of nursing homes? In terms of housing that is truly affordable and accessible? In terms of the kind of services that really allow them to lead meaningful lives? In many cases, no."

These are the sort of questions we should be discussing. Why do people, all people, want to die? What drives a person to think death is preferable to living? Pain is not the primary variable. People choose to die because they fear losing their independence and autonomy. And here the link between end of life issues and disability is glaringly obvious to me. When I see a person with a disability I think of all the things a person can do. The same can be said for any person approaching the end of life. I think what can this person do? How can their life even with death impending be enhanced? This is not typically how others with no exposure to disability or end of life issues think. Instead we isolate the disabled and elderly--a historic pattern we have yet to break. A desire to die is a reasonable reaction to a future to spent in a nursing home. I suggest if we had community based care for elderly people life would be substantially different. Life would have value. The same can be said for those that live with a disability. Imagine if we placed value in accessible housing, transportation and lowering the unemployment rate. I bet if we did this, and I mean if we had a nationwide campaign, the lives of people with a disability would be perceived as having value.  Yes, I have a dream of a utopian society. Do not blame me. I was reading Thorstein Veblen last night who was weak on policy ideas but was a great social critic.  

Syracuse Redeemed!

I was getting gas yesterday in an industrial like area of Syracuse. Thanks to waze, my favorite app on my cell phone, I found the cheapest gas station in town. As I was getting out of the car I noticed a man filling up a large truck and thought thank goodness I am not paying that bill. We made eye contact and exchanged nods. As I got in my wheelchair the man said "Wow, I never saw anyone get in and out of a car with a wheelchair like your". My face turned to stone--as it usually does when such a statement is directed my way. The truck driver instantly noted the change in my facial expression and said "I am sorry I bet people comment on your wheelchair every time you get gas." I replied "pretty much". He laughed and said "people ask me how much it costs to fill the truck with gas pretty much every time". He drew out "pretty much" and then we both laughed. 313 million people live in the USA. I encountered one man who had social skills and understood the meaning of his words.  I wonder how many others get it. Perhaps one day I should start a tally.

Respect Often Absent in Hospital ER

Not Always Working is a mixed bag. Some posts are interesting but many are not. I visit the site once in a while but am not a regular reader. Here is a link: http://notalwaysworking.com/real-people-with-real-problems/31832 I found this post of interest because the exchange below likely happens in every ER in the country. Two friends go to an ER. The person that needed medical attention had Cerebral Palsy. She had an allergic reaction and was not seriously ill. Her speech could be understood. The other person was her friend who went to the ER to provide moral support.  The following conversation took place:

Nurse: “And how old is she?”

My Friend: “20.”

(Instead of responding to my friend, the nurse looks at me.)

Nurse: “Is that correct?”

Me: “I would assume. She can speak for herself. I’m only here as a friend.”

Nurse. “And for how long have you had these symptoms?”

My Friend: “I noticed them this morning, but they’ve gotten very bad.”

(Again, the nurse looks at me instead of my friend; I say nothing. She continues doing this for several moments, asking questions and then looking at me, until my friend finally snaps.)

My Friend: “You talk to me, not her! She’s my friend; she doesn’t know anything about my medical stuff.”

(The nurse stands up and storms away. I follow, more than a little angry on my friend’s behalf.)

Nurse: *to me* “You may think it’s nice to let her pretend to be a real person, but some of us are trying to run a hospital.”

Me: “Excuse me?! She’s in a wheelchair; she’s not stupid! She IS a real person.”

Nurse: “Well if you want to pretend that’s true, that’s on you.”

(I am struck completely silent in rage and shock. A doctor, who I haven’t seen until he SLAMS paperwork down on the desk, interjects.)

Doctor: “Nurse. Supervisor. Now.”

The above has happened to me countless times since I was paralyzed. Rather than assume competence health care workers in the ER assume incompetence. The only way I would go to an ER is  if I am dying--literally critically ill with death a distinct possibility. Pretty much every other paralyzed person I know feels the same way. We avoid the ER because we know our existence is not valued. We are not fully human. It is assumed we have some wort of fatal flaw. I have been disrespected by triage nurse and physicians. I have been disrespected by ancillary staff. I have been disrespected by medical technicians. Virtually every ER I have been to has been hostile to my presence. I do not take others to the ER. If I did they too would be disrespected. What exactly have health care workers done? Here are some examples.

1. My son needed stitches. His hand was wrapped in a bloody hand towel. The triage nurse asks my son who is the patient. She looks to him for the answer. Later an administrator asks me if I have legal documentation to prove I am the father. 

2. I cannot a catheter in, a potentially serious problem. I am on a stretcher legs spread and the resident starts to tell me in great detail about exactly why he would rather be dead than suffer a spinal cord injury. He was very clear a spinal cord injury was a fate worse than death. 

3. I burned my leg with hot water. It is a serious burn. The physician needs to put a dressing on. Before doing so he grills me about paralysis. The line of questioning is demeaning. I am asked how I get dressed, can I have sex, where do I live, do I have a personal care attendant, can I drive, why am I alone, etc. The line of questioning is morbid and not relevant at all. 

People wonder why accessing health care is a problem for people with a disability. I suggest a quick trip to the local ER will provide ample evidence of gross social inequities not to mention a physically inaccessible environment. 

Idiocy Exists Even in Syracuse

I had my first negative social interaction here in Syracuse.  It pretty much ruined my Sunday routine. I leave my home early in the morning and drive to Syracuse. I get in at lunch time and my first stop is Wegmans. My brother John told me this is one of the best super market chains in the country. He is right, Wegmans is awesome. Great prices, excellent food, wonderful produce, and spotlessly clean. Believe it or not, I look forward to going to Wegmans. So there I am entering the store thinking food when a short heavy woman accosts me. "Hey, you got out of your car on the wrong side. Why are you out by yourself?" I put my head down and move as quickly as possible away from this woman. This effort fails as the store is crowded. "I am speaking to you. Where is your care taker? You cannot shop by yourself. You need to be care for and supervised". I am desperate at this point to get away. I quietly but firmly say "Please leave me alone. I use a deep tone of voice that I hope has a level of animosity.  Not a single person shopping or going by is paying attention. Shit, what can I do? If I raise my voice and say what I want I will look like a jerk. No one raises their voice when confronted with a  heavy woman about 60 years old. But from past experience I know I have two choices: a direct confrontation where I must assert authority or figure out an escape route. As these options are going through my head I realize this woman thinks I have somehow escaped or snuck out of the local group home. Yes this is far fetched. I mean how many people in a group home drive an Audi and get out of their car on the wrong side. Regardless of her background, she clearly has a very strong opinion people like me, a person that uses a wheelchair, needs a "care taker".  I figure I am screwed but am suddenly saved from having to establish my personhood: a sea of shopping carts part. I scramble through the narrowest of spaces, two mothers looks at me in mild annoyance, and I make a sharp turn into the crowded produce section. I am free. The woman cannot follow me. She is as wide as I am in my wheelchair and I am much faster.

Driving to the motel I thought what a unique life I lead. In many ways I am grateful. Living with a disability is the perfect cure for a big ego. Every time I think I am too good or too smart I have an experience such as the one I just described. Perhaps we should have Tea Party types and various elected politicians use a wheelchair. Afterall, they are playing a dangerous game of political suicide from which they are immune from harm. Perhaps having their most basic rights questioned, simply to go shopping, might put things in perspective. Hey, it works for me.