Wise Words When One Enters the World of Disability

Fear is a primal emotion. Many people fear disability. We crippled people as all know are the only minority group one can join against our will. All humans are one physical accident away from being crippled. Examples, tragic examples, abound. The paralyzed bride. The paralyzed architect who dedicates his life to walking again via the exoskeleton after a crane falls on him. The elderly who have a stroke. People with diabetes that lose a limb. People who experience an industrial accident and are blinded. The human body is frail. Everyone knows this. Adults and children know they can be hurt. The land of disability is one mishap away from reality. There is good reason to be fearful of disability. I see this enacted in a myriad of ways. Stares. Always the stares. Outright bigotry, not common place, but it exists. "I would rather be dead than paralyzed". I have heard this many times. Subtle thoughtless reactions to my presence. Mothers in the supermarket grab their kids hand and whisper "Watch out for that man". Thanks, a lesson has been learned. Fear all who use a wheelchair.

None of the above is new ground. Social scientists have observed and analyzed why people fear the crippled for decades. I have experienced prolonged social isolation that is the companion of fear. No one wants to be around socially polluted people and polluted I am. My presence creates a symbolic stink. A spectacle can and often does follow me as I navigate a hostile world. I enter a posh New Haven, CT hotel through a locked lift next to the steps. I enter the hotel via the baggage room. People stop and stare. I go to a minor league hockey game with my son. We observe a group of people with obvious cognitive disabilities. By the time the game is five minutes old every person seating next to these men and women have moved to different seats.  This group, tightly knit, is surrounded by a sea of empty seats. On the drive home my son falls asleep and I cry. Did those that moved know they were cruel bigots?

The fear of disability is not as prevalent in my life as it once was. I am aging into normalcy. A white middle aged man using a wheelchair is not as much a social affront as an 18 yearly male or female using a wheelchair. People assume I had a "regular" life and experienced a tragic accident as a mature adult. This misconception makes the ignorant feel better. Hence they gasp when and if they learn the truth. I have been paralyzed more than 35 years. Oh my God! Tragedy! Horror! And silently fear. Such people slink away from me unable to cope with my reality. What people do not get is just how oppressive being crippled is. Eva Kittay calls the social work and required social navigation skills needed to lead an ordinary life emotional labor. People like me who use a wheelchair are always trying to sooth the disruption our presence causes. Sure I will go in the back door. Of course I do not mind using a wheelchair lift filled with trash. No accessible bathroom? No problem. I will dehydrate myself. When I fly I will be the first person on and last off adding a great deal of time to my trip. I am expected not to mind. I am expected to put on a happy face.  Those charged to assist me on and off the plane do not speak english nor do they know what to do. No problem. My job is to educate them. Education. It is always about education.  I have been educating people for a long time. The lessons are not working. I am weary. Over the last few months I have come to the conclusion I will never be equal to others. Bipedal typical others. My presence will always be a disruption. My existence a spectacle. My job from now until I die will involve heavy lifting. The emotional labor is overwhelming.  It is in fact deeply depressing. I yearn to be normal. To go out the door like any other person and not feel as though the weight of the world is on my shoulders. I am not a person. I am the representation of all crippled people who use a wheelchair. If I am tired and cranky, have a negative experience with a typical person, the lesson learned is all people like me are mad at the world. Sorry but no. I am not mad at anyone. I am tired. I would like to be treated with a modicum of respect. I would hope people, 23 years after the ADA was passed into law, considered equal access a civil right. This is not the case. I have no reason to believe the required leap in logic to a civil rights thought process will ever take place.

The mere presence of people with disabilities is a social problem that defies a solution. It is not a shock to me but it is to others when they enter into the world of disability. Victoria Brownworth, an award winning write and journalist recently wrote about her entry into the world of disability in the Advocate. Link: http://www.advocate.com/commentary/coming-out/2013/10/11/coming-out-asdisabled

Ableism, like homophobia, is a thing. It pervades our entire society. The Americans With Disabilities Act is an unreliable farce, and those of us who are disabled — one in five — must battle with employers and landlords, doctors and health insurance companies to get what we need. We have to be activists whether we want to be or not, and yet all the while we must do our best to hide who we really are from those on whom we depend for survival. But if one in five of us is disabled, that means everyone knows someone with a disability. Every family has one of us, every workplace, every school, every friend. We are everywhere. But is disability addressed in any community — LGBT or any other — or are we shunted aside as much in 2013 as we were centuries ago, kept out of institutions by recent laws, but not by attitudes?

One in five LGBT people has a disability. Do we even think about it as a community, other than to pay lip service to the term "ableism"? I have a friend on Twitter — a trans woman with cerebral palsy — who I would never know was disabled from her exchanges. But I know, because I’ve experienced this myself, that when she goes out in her wheelchair, she’s treated as if she’s not really there. Her smart, witty, articulate self is obliterated by people seeing only the disability. People speak to the person pushing your chair, as if you’ve been rendered mute. I haven’t been rendered mute. Ableism is the last and perhaps most formidable ism we have to address in our society. Our fear, as a culture, of the sick and disabled is not much evolved since the Middle Ages. We no longer warehouse the disabled, but we still want to. We still want to keep the different bodies out of our line of vision, because disability feels foreign to us, and frightening — perhaps because we know it could be us next. So this is me coming out crip. I never thought I’d be disabled until I was. The issues surrounding disability are huge and touch all of us, so none of us can afford to ignore them.

All of us will be touched by disability. None are unaffected. I wonder when this human rights issue will hit the front page. I wonder when will disability based activism be valued. I wonder when will disability studies scholars start advocating for those they study and dare I saw exploit.  Of one thing I am sure. I will never see or experience the equality that has eluded me since I last stood up as an 18 year old man. Grim thoughts on a lovely though cold day. 

Inside Higher Education Picks Up on My Story

Today, Inside Higher Education published an article by Megan Rogers that expanded on the significance of my most recent post about being excluded from a disability related conference held at Hobart and William Smith College. Here is the link: http://www.insidehighered.com/news/2013/11/19/disability-studies-meeting-wasnt-accessible-those-disabilities#.Uotllux0sd8.facebook
I also want to link to Stephen Kuusisto's post at Planet of the Blind. Link: http://kuusisto.typepad.com/planet_of_the_blind/ Kuusisto was equally involved and I want to acknowledge my deep gratitude for the solidarity he and Rebecca Garden displayed. Kuusisto and Garden could have easily decided to participated at the conference. Steps are not an architectural barrier for them. In a rare display of academic and personal integrity, they refused to participate. Kuusisto and I left Hobart and William Smith with deeply mixed emotions.  I had looked forward to this event.  This was an opportunity for me to see a small elite liberal arts college that I was told was gorgeous. It was indeed a gorgeous campus. It also presented multiple challenges for a person that uses a wheelchair. I was shocked, dismayed, and humiliated. For Kuusisto the visit was a trip down memory lane. His father was for many years president of Hobart and William Smith College. I got to see the house Kuusisto spent many years living in as a youth. I cannot say we enjoyed our trip to Geneva, NY but it was eventful that's for sure.

I would like to echo one point raised by Kuusisto in his post. Hobart and William Smith has reacted immediately and appropriately to the civil rights violation I experienced. Unlike many institutions that would form a committee and attempt to sweep what took place under the rug Hobart and William Smith has reacted proactively. President Mark Gearan swiftly apologized and organized meetings that were held yesterday. He has vowed to keep me and Kuusisto informs as to what changes will be made. After an initially awkward exchange with me,  the organizers apologized and they too vowed to incorporate significant changes. I emphasized to Megan Rogers the real significance of the story will be revealed in the spring when the working group meets again. Today, I made multiple and detailed recommendation to the organizers of the event. It is my hope many of the changes I suggested will be acted upon. If this is the case Hobart and William Smith will establish a precedent for how to react to egregious ADA violations other institutions and academic organizations can follow. Sadly this implies more such violations will take place. And I know they will. Indeed, "problems" are what I encounter virtually every time I attend an academic conference. The disconnect here is obvious to me. Access and inclusion is not a problem but rather a matter of civil rights. I, as a person with a disability, have the right to participate and expect no physical or social barriers will be encountered. This is not how my inclusion or participation is perceived by my academic peers. I have continuously asserted I am not problem but rather a human being that shares the same civil rights as others--typical others.

One last point: In the last six months I have made a concerted effort to interact with scholars in the health sciences. My experience in 2010 healing a significant wound shook me to the core. It was painfully clear my existence was not valued by medical professionals charged with my care. I could not help but conclude medical care now worships at the alter of high tech care but in my estimation has lost its soul in the process. Humanism is all too often absent. I want to change how people with a disability are or are not treated in our health care system. Lives are at stake, of this I have no doubt.  Surely the recent case of Tim Bowers death within 24 hours of a severe spinal cord injury is a perfect example of a deeply ingrained bias against life with a disability held by many physicians. Bowers needlessly died because his life was thought to have no value. Worse yet, he was given the illusion of choice. And what was the response of bioethicists? They hailed this man's supposed autonomy. I find this assessment perverse. Hence my effort to interact with clinicians and those currently in medical school or doing their residency. These people represent hope to me. If I can reach physicians in training who are open minded, eager to learn, it will be to the benefit of all. I have no idea if I will be successful but I am feel compelled to try.

An Unexpected Humiliation at a Conference on the Humanities, Disability and Health Care

“Ring bell for access”. I have not seen this sort of sign since the ADA was passed into law over two decades ago. When I came across this sign at Hobart William Smith College I knew my presence at a one day conference designed to address disability, bioethics and the humanities  was  not wanted. Had I entered via this entrance I would have knowingly accepted the fact the organizers violated the ADA. I would be as guilty as they are for violating the letter of the law as well as the spirit of the ADA. 

“Ring bell for access” is an artifact of the past. This was my reality for many years. Before the ADA was passed into law, I rang many such bells for access to buildings. Half the time no one answered the bell. The other times after an extended wait someone would arrive to open the door. In short, I quickly learned “Ring bell for access” really meant there is no desire or commitment to wheelchair access. The sign might as well read go away. Until today I thought these signs were obsolete—akin to “white only" signs that are a shameful reminder of segregation. My experience yesterday was deeply unsettling. A victory in terms of civil rights was supposedly won 23 years ago with the passage of the ADA. After yesterday, I consider the ADA a hollow victory as decades later I am still constantly put in the position of educating people about disability. I am routinely the only academic with a disability present at conferences. This is tiring and disheartening. Barriers, social and physical, remain commonplace.

Two thoughts dominate. First, I was and remain deeply humiliated. Second,  how could this happen? The details are as follows: Along with Stephen Kuusisto, I tried to attend the Humanities, Health and Disabilities Study Workshop organized by Sarah Berry and Lester Friedman. The event was sponsored by Central New York Humanities Corridor, from an award by the Andrew W. Mellon Foundation and held at an elite liberal arts college Hobart William Smith. Dozens of emails were exchanged prior to the event. A website and agenda were established. The hard work required to create a vibrant day long discussion was performed. Sadly, absolutely no one bothered to think about wheelchair access. I knew I was in trouble before I got out of my car. I saw the following sign. 

There was no signage about wheelchair access. Just the above sign pointing one to enter via three steps. The irony to me is that all other participants to my knowledge simply walked up those steps without thought. Not one scholar, people supposedly interested in disability and health care, wondered about the ADA or how a person such as myself who uses a wheelchair could enter. Thankfully Kuusisto is very familiar with the campus. He and his guide dog Nira knew another entrance where I could enter the building. We proceeded to the accessible entrance, went down a hallway to find two steps barring me from the room where the conference was being held. Of course a spectacle ensued. People that know nothing about wheelchair access get involved who desire to help. Ignorance added to the absence of wheelchair access is not helpful. This sort of "help" usually involves powerless people rudely telling me what to do. At this point I am furious as is Kuusisto. I ask Kuusisto to find the organizer Sarah Berry. He sets off and finds her enjoying a cup of coffee. She is blissfully unaware of what is taking place. She is unaware the only entrance to the meeting room is through an emergency exit door. This is a blatant violation of the ADA. I a stunned. Did not a single person do a walk through prior to the meeting? Obviously not. Why should she? I cannot help but conclude she and all others present who were about to spend seven hours discussing disability assumed a scholar with a disability would not be present. This is a fair assumption. Here is a photograph of the group taken after the last time they met. And yes they are standing on the steps I cannot navigate. 

This is my life. I am routinely the only person present at academic meeting that uses a wheelchair. While I am glad Kuusisto was with me I cannot help but feel completely and utterly alone. In retrospect, I think my presence was considered a problem. Equal access was never thought to be a civil right nor did others involved think that I might have something important to offer.  I was a problem. Lip service was paid to wheelchair access. I am sure the organizers were told the event was accessible. This was accepted as gospel truth because either they did not care or were ignorant. Each is equally objectionable.

I was placed in an impossible situation.  I could  enter the building via an obvious illegal entrance or not participate in the event. I was angry and humiliated. I think I had no choice but to do the ethical thing. I asserted my humanity and civil rights and refused to participate. In my opinion Berry and Friedman, conference organizers, did not care one iota. Access and inclusion was never valued. Inclusion was never deemed a priority.  Berry and Friedman should be ashamed. Every participant should be equally ashamed. An event was held about disability and no one bothered to put any thought into wheelchair access. No one gave a damn. 

One last point. In terms of logistics, my time and effort to attend, was disrespected. This is the norm for me. No one considers the logistics I must perform in a world designed for bipedal people. I radically altered my schedule. I taught at Syracuse on Monday and Wednesday. After class I drove to Yale University where I gave a paper at the medical school on Death versus Disability and took on utilitarian philosophers for the first time. My talk drew a good audience. Access was flawlessly handled. I woke up very early the following day, chose not to have lunch with a friend in New Haven or make an easy drive home. I made arrangements for a friend to care for my black lab Kate. I chose to drove five hours back to Syracuse, picked up Kuusisto, drove another 90 minutes to Geneva, NY, and stayed in a hotel so I could be refreshed and ready to contribute. My effort was not reciprocated. In fact I was disrespected in the extreme. So here I sit a day later and I am still seething. How can people supposedly interested in disability appear to be content excluding the voices of people with a disability. How can these people live themselves knowing they humiliated and embarrassed me? Stunned. I remain stunned and wonder when and if a sorry might be forthcoming.Yet again the slogan "nothing without us" seems timely and apt. I dream of a day when this slogan needs to be explained because I live in an inclusive society  That world does not exist. I hope to see it come into existence someday but  I doubt I will live that long. 

A Deer Hunter is Dead: Humanity and Life Needlessly Ended

I am disgusted. Ashamed really of American society. Timothy Bowers is dead. Few will recognize the name even though his death has gone viral. The mainstream press refers to him as “a deer hunter”. His death is a tragedy.  I can see in three or four years a made for TV movie—a real tear jerker. Average man, on an average day, with a newlywed wife and baby on the way goes out to hunt. He has done this many times. He is an avid outdoors man. But tragedy strikes. He falls 16 feet and crushes his C-3/4 vertebra. Imaging suggests he will most likely be a vent dependent quad. Not to worry though, he will be heroic. He will die. And he does indeed seemingly choose to die. The story is full of emotion and short of logic. In fact the story I have just told is utter bull shit.

Bowers needlessly died. In fact when I first read the story my first thought was this man was murdered. Legally killed by his family and physicians. Bioethicists are providing the post mortem cheer squad. Patients rights reign supreme. This is what happens when health care is a commodity. This is what happens when people see a paralyzed person and the first thought is about the expense of keeping such a person alive. So the heart broken physician enters the picture with long white coat flowing and perhaps blue scrubs, the very representation of human compassion, and paints a grim picture of a sudden spinal cord injury. The man is heavily sedated. Imaging depicts a devastating wound at C-3/4. He will likely be a respirator dependent quad. Tears flow. A grim reality is explained—medical costs will be staggering. Life in an institution is a reality. Bankruptcy a real possibility. Framed in this manner death seems preferable. But wait!  We must be ethical. We cannot just end this man’s life—he wife is pregnant for goodness sake. Sedation is lessened and the man is told the gravity of his situation. He wants to die. His family wants him to die. His wife recalls they were at a charity event helping paralyzed people and he was clear life using a wheelchair was not what he wanted. The respirator is turned off. The man dies.

What is missing? Stephen Hawking. Jean Dominique Bauby. Stephen Gleason. More than one board member of the grass roots group Not Dead Yet. The very real and significant possibilities of life as a vent dependent quad are never mentioned. No effort is made to contact anyone with a comparable disability. This is a one sided rush to a death. This man was not given a legitimate choice. Worse yet, this man’s autonomy is praised by those in bioethics. We were ethical. No, you were not. Bioethicists support the easy, simple idea death is preferable to life with a disability. I get it. I have been in a bed when under different circumstances I got similar advice from so called compassionate care giver. Let me tell you it is easy to die when you are paralyzed. When one expresses such sentiments a veritable cheering squad supports you. The opposite side of this reality, the decision to live as paralyzed man is frowned upon. The worse the paralysis the more narcissistic you are thought to be. A selfish and costly existence, a social burden, the representation of the limits of medical science. I suggest bioethicists, hell any bipedal person, talk to a few paralyzed people. This will not happen because somewhere along the line dissent became unpatriotic.  Advocacy in the realm of bioethics and politics is a dirty word.

Why the hell am I as a paralyzed man involved with bioethicists.  Most of the utilitarian philosophers want me and those like me dead. If I sound off base I suggest you google dear hunter paralyzed. Thousands of comments are easily accessible--in choosing death Bowers was a hero. In choosing life I am disparaged, disliked, and seen as an economic drain. My existence is deeply stigmatized. Dying is easy it is the living that is a bitch. 

Some People Just accept it. I Don't

Another paralyzed bride story has been published. This time the Denver Post has printed a story replete with an eight minute video and a number of photographs about a very attractive young woman who wants to walk down the aisle at her sisters wedding. Hard to imagine the Denver Post story is much worse than the previous paralyzed bride story I wrote about. How bad is the story? Let me quote the first sentence: For someone who was told she would never walk again, Mackenzie Gorden spends a lot of time thinking about shoes". The below photograph highlights this point.

The story in the Denver Post glorifies walking. Using a wheelchair is deeply stigmatized. Do not trust me--read for yourself; here is the link: http://www.denverpost.com/paralysis/ci_24406689/stepping-toward-hope-paralyzed-bridesmaid-defies-disability Lines such as the following are inherently demeaning.

"Patients are standing up and taking steps after years of sedentary life. Quadriplegics lean only on walkers to shuffle hundreds of feet".

"Golden retains the rail-thin figure of the dancer and cheerleader she was. But a girl can have many goals".

"Golden was 18 and looking forward to senior year. She had danced and cheered all over the state and was to captain her team on a summer trip to cheer in Hawaii. She was a nursing assistant and wanted to pursue a nursing degree. Shattered C5 and C6 vertebrae now clamped down on those dreams".

Goodness where do I start? "A girl can have many goals". This sentence could have been included in  a 1955 etiquette book for girls. You know a girl is supposed to support her husband, have children, and be a good homemaker. Paralyzed people are sedentary, quadriplegics shuffle their feet, Gorden retains here rail thin figure and a spinal cord injury clamps down on her dreams. This is not just bad. This is epically bad. The hook, of course, is tragedy. The heroine is the beautiful but crippled woman who refuses to accept the fact she will never walk again. Left unsaid is the fact she is a superior human being when compared to other paralyzed people that are lazy failures. The exploitation involved is extreme. The story is gender biased in the extreme. Does the fact Gorden can brush her own hair and put on make up seem worthy of noting? I think not.  Sex sells I suppose as the story also has a photograph of Gorden in a pool wearing what else but a bikini.

The framing of this story is dreadful. Worse yet, is that Gorden is at Craig Hospital in Denver. This is one of the leading institutions in rehabilitation for people with a spinal cord injury. I wonder about the reaction of health care professionals who work at Craig. Are they delighted by the story? Are they appalled like I am? To me, this story is a missed opportunity. There a few nuggets of great interest that reveal how far the treatment of spinal cord injury has advanced. Gorden obviously has an incomplete injury. In the olden days when I was paralyzed the American Spinal Injury Association had not as yet established the ASIA scale. Two sorts of injury existed circa 1978. Complete and incomplete. Those that fit into the incomplete category were exceedingly rare. Today,  spinal cord injury is broken into five categories and there really is a range of function thanks to advances in immediate post injury care.  None of this fits into the Denver Post story. The focus is on walking and walking alone. Reality however is different.  Apparently Craig Hospital has embraced locomotor based therapy.  The goal is not walking but rather mundane and serious issues associated with spinal cord injury: circulation in the limbs, bone density, pressure sores, muscle atrophy, obesity, and bowel and bladder function. None of this is sexy. This sort of discussion will not sell newspapers. Into this void we get yet another story of a paralyzed woman that wants to walk.

Most disturbing to me to me is Gorden's seeming dismissal of good advice from her paralyzed peers. They told to her move on with life, to focus on ordinary things like going to college. This advice is dismissed. Gordon is quoted as stating it is easy for them to say because they don't have a chance to walk again. This individualizes her disability and isolates Gordon from others. She also confesses to being annoyed with this attitude. I suspect she also feels in some way morally superior to her paralyzed brethren. Perhaps in time Gorden will have a more nuanced view of disability and spinal cord injury. Perhaps she will discover the real issue for a person that is suddenly paralyzed is far less physical than it is social. Despite great progress the physical environment is not designed with wheelchair users in mind. It is my hope Gorden will realize that life is sweet regardless of whether one uses a wheelchair or is bipedal. It is my hope she will learn that images of her mother lifting her and putting her in the passenger seat leave much to be desired.

I see this image and cringe. Craig Hospital has an exoskeleton and other high end medical devices of dubious medical benefit and Gorden is lifted in and out the car by her mother. This makes absolutely no sense. Why does she not independently drive a car or mini van equipped with a lift and hand controls? If I were a college aged person being lifted in and out the car by my mother would be the last thing in the world I would want to happen. Screw walking, I want to be independent. I am happy to give Gorden much slack. She has been injured less than two years. My problem is symbolic.  What message is being sent when it appears the entire point of rehabilitation is an effort to walk? What message is sent when time is spent walking in an exoskeleton and Gorden's mother wishes she had such a device at home? Again, this makes no sense to me. I would think with an incomplete injury the effort to retain or regain as much movement as possible is a critical goal.  But it appears to me the only goal is walking. I for one would like to know more about Gorden's plan for attending college. She wants to be a nurse and when she met a paralyzed physician she thought if he can get through medical school I can get through nursing school. Rather than focus on such typical goals.  I would like to also know how exactly she ended up at Craig Hospital? Was she selected because her injury was incomplete? If so, how does her care differ from a person with a complete injury? Are people with no chance to walk again deemed unworthy of rehabilitation? Are such people perceived to be failures? To me these sort of questions emphasize how little the readers of the Denver Post will get out of the story about Gorden. A waste of newspaper space if you ask me. A destructive waste of space as well.

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.