Ignorance Can Hurt

I did my least favorite chore yesterday. I went to the local laundromat. Those that read my blog posts on a regular basis know I have had many inappropriate social encounters while doing something as mundane as laundry. When compared to the past, what took place yesterday was a minor incident. I choose to do laundry at odd times. Who does their wash on Tuesday afternoon? I hoped no one. I was wrong. A few students from the local college were doing their wash. I never have issues with the college kids--they are glued to their cell phones or lap tops. The people I watch out for are men and women my age and older. This a generalization but I remain wary at all times. I literally never know what people will say to me. Well one man was watching me from afar and I thought he was going to check his dryer when he suddenly veered my way and said "I did not know you people could do laundry. You are amazing." I was not impressed. I did not reply. I intensely focused  on folding my clothes and scrupulously avoided any eye contact. The man pressed on: "You are inspiring. Really, I could never live in a wheelchair. I am going to tell all my friends about you". I look up and cannot hide my distaste. The man says "What? Why the look?". I reply "Think about what you are saying". Utterly immune he does not yield: "You are amazing." We have already established that I am amazing I want to reply but based on previous experience being a wise ass is counter productive. Then the light bulb goes off in the man's head: "You got here by car! You can drive! Wow, I am going home and will tell everyone about you".

This social exchange and thousands like it are a part of my life. They are part of my life 25 years after the Americans with Disability Act. They are part of my life after 40 years of progressive legislation designed to protect the civil rights of all people with disabilities. The glacial nature of such demeaning comments has worn me down. When I was young and full of piss and vinegar I might have told this man to fuck off. I rarely if ever do that because being confrontational does not work. Being confrontational has a boomerang affect. Instead of highlighting the fact this man is an ableist any anger on my part or snarky reply makes me look bad. I am instantly the problem. A sweet and innocent comment and high praise prompts anger? Wow, that stereotype of the bitter cripple who is mad at the world gets reinforced. Bipedal others know all. I am angry because I cannot walk. Using a wheelchair is bad. My life is hard. The ordinary is impossible. I am the plucky cripple who gamely moves on with life. My life sucks don't you know. How do I explain to an utter stranger that my life is quite good. I teach honors students at Syracuse University and have the respect of students and faculty members alike. How do I explain inspiration porn that has been imposed on me is deeply objectionable? How do I explain the long history of disability based oppression? How do I explain all this to a man in the local laundromat and do so in no more than a minute? Simply put, it is impossible and a classic Catch 22 situation.

I have had far more negative social interactions than the one described above. I don't know why but this social exchange rattled me. The rattle here is a deep rooted sadness. I have been paralyzed since I was 18  years old and have spent my entire adult life as a paralyzed man trying to make others see me as something more than a tragedy. I am a human being. I make a conscious effort to not hurt others. I do my best to be kind. I take great pride in teaching young men and women who are starting their adult lives by attending college. I was having a good day and this exchange ended it. I was once again reminded my existence is less. Indeed, my existence is so miserable being able to do laundry and drive a car is an accomplishment. The bar for people with a disability cannot be set any lower.  I returned home sad. I remained sad for many hours. I wondered why these sort of interactions are commonplace. The rational part of my mind could easily explain the sordid and depressing history associated with disability based bias. I know about the cultural implications of the ugly laws, forced and coerced institutionalization, segregated mass transportation, the exclusion of children with a disability from public schools until the mid 1970s, the lack of accessible housing, high unemployment rates associated with disability, poverty etc. I teach this to my students. The bottom line is that I am a human being and I was hurt. In contrast, the man I encountered was happy. He was going to call his friends and tell them about me. I assume they too will be inspired by my ability to do laundry and drive a car. If this is the case it will take generations before we people with a disability are truly equal. I often think about the progress of other groups discriminated against. Black people do not live in a post racial America. Women still experience gender based discrimination on a daily basis. Donald Trump wants to build a wall between America and Mexico to keep out rapists and illegal immigrants.

Occasionally I am asked, "Come on Bill, progress has been made. It wouldn't kill you to point out the positive developments". I cannot deny progress has been made. I cannot deny the law is firmly on the side of disability rights. All this is true. But educating people one by one in a country of over 300 million people is not an efficient means of educating the general public and that is what I am forced to do on a daily basis. I must be socially astute and polite in the face of ignorance. I change my schedule and routine to avoid people like the man encountered. I am regularly put in a position in which I must explain my existence has value. I do this and much more as a means of self protection. I am forever on guard and wary of others. This takes a mental toll large and small. The butchers bill yesterday was sadness. I shook it off as I always do before I went to sleep. Today is a good day, its sunny and warm (that does not happen often in Syracuse). My beloved lab Kate and I went for a pre dawn walk. I am going to campus to meet a foreign scholar who is young, smart, ambitious, and eager to learn. I am hopeful. I need to believe in goodness. I find belief in many places. Tonight I am going to Grey Rock Farm, a local CSA, for dinner. I love the sounds and smells of small working farms that abound in Central New York. Farms make me feel grounded. It reminds me of what a gift life is and that we humans are but a small cog in the cycle of life. Part of that proverbial cog is disability and bodily differences. Human variation is good and a vital part of evolution. I just wish others saw what I do when disability is present. I see the best of humanity and infinite possibilities.

Nonscientific Research and the X Men

In the last few years I have written about many unpleasant social exchanges with people in Central New York. I have had doors slammed in my face, I have been screamed at, and I have been denied service in the local diner. I have had men drop to their knees and pray for my rotten soul. However, in the last three months I have not had any note worthy negative encounters. What changed? My son moved to Syracuse where he works for a large nationally known hotel chain. He is saving up to buy a car and for the last four months we have shared my car. This has been a pain in the neck. Both he and I are not exactly skilled in terms of our organizational abilities. He has been late a few times dropping off the car and has a penchant for doing so at the worst possible time. We have miscommunicated more than once. We have in short messed up meeting each other at the right time and place too often. The car sharing is less than ideal but is a short term issue.

I will readily admit I have no issues with ruthlessly exploiting my son's bipedalism, youth, and typical male strength. As he knows, he saves me oodles of time. What is carefully planned on my part is what he does for me. Certain routine things I do are social battlefields with bombs lobbed my way on a regular basis. Hence, I do my level best to have him put gas in the car. People routinely harass me when I do this by myself. Offers of help are often used as a means of denigration or false praise. The gas station is a particularly hostile environment when I am alone. Another social battle field is the laundromat. If I could change one thing in my life it would start with a washer dryer in my little place I call home. Based on nearly two years of using a laundromat I can state with some certainty everyone who washes their clothes at the laundromat took a wrong turn in life. The human range who access the laundromat is wide. Stoned college students. Miserable parents. Elderly drunks. Academics like me. Everyone I encounter appears to have a story and are too eager to share it. Those religiously inclined are magnetically drawn to me. They are desperate to cure my body and soul. When I am not impressed with offers of help the reaction is swift and violent. So when I have a large amount of clothes to clean or lets say a seasonal change of bedding I try and bring my son with me.  While he can't fold clothes well, he can fold towels and sheets. He speeds up the process and we get out of dodge promptly. His presence alone protects me. His protection is very much appreciated but I am deeply torn and troubled. I have hesitantly concluded my existence is not only an affront to others but I am vulnerable physically and socially. I am far from equal in the eyes of the so called normate that abound.

What do we think when hear the word wheelchair?What do people think when they see me?

I know what others do not think when the word wheelchair is uttered or when I am present. Competence, power, ability, disability rights, community, father, mother, brother, sister, employer, doctor, employee, home owner, renter, land lord, beautiful, handsome, sexual, sensuous, lawyer, professor, president, governor. None of these things are thought of when I am present. My life is less. I am less. My social status is significantly reduced. I am a diminished human being. I am an open book for all others who have no qualms about asking rude and intrusive questions foremost among them is can you have sex. This is hard and I forcefully reject the stigma associated with disability. Thus being in public is never easy because I reject assumptions associated with wheelchair use. I will admit some days I fail. I simply cannot leave my house; I do not have the psychic energy to deal with able bodied others. But out I go on a regular basis. I wish I could say I do so with pleasure but that would be a lie. I have a deep yearning. I am lonely and as I age feel all the more isolated and have an urgent need to connect with people like me. How I hook into disability culture is a challenge. I am envious of deaf people who identify as Deaf with a big D and have their own language! Where do we cripples call home? This has occupied much of my thought and I have thought long and hard about other minority groups in terms of identity and community.

I need to do something. I believe I have acted somewhat cowardly in recent months. I cannot use my son as a social shield. How can I be strong? How can I be a bad ass. Enter my colleague Diane Wiener, a human ball of energy and brilliance. She organizes a yearly event Cripping the Comic Con at Syracuse University. Frankly I am not much of a comic book graphic novel kind of guy but Diane makes me think. Inspired and looking for strength I googled the X Men and its creator Stan Lee. The X Men I learned were created in 1963 amidst the turmoil of the Civil Rights Movement. Then it clicked. Lee wanted to create a comic that that highlighted bigotry and racism via science fiction. Magneto and Professor X were direct correlations to Martin Luther King and Malcolm X. I think I am far too Professor X and need to channel my inner Magneto. Next time I go out this is how I desire to appear. Dangerous and frightening. Take that bipeds.

The Ethics of Choosing the Hospital or Heaven

Last Fall a firestorm erupted with regard to a young child, Julianna, whose parents asked her if she wanted to go to the hospital or heaven. A two part CNN story delved into the life of Julianna Snow, a 5 year old child, who has a neurodegenerative condition called Charcot-Marie-Tooth syndrome. For unknown reasons, Julianna's condition is severe. Her mother, Michelle Moon is a neurologist, and wrote about her daughter on a blog she maintains. Link: https://juliannayuri.com Below is a passage that sparked the controversy:

Me: Julianna, if you get sick again, do you want to go to the hospital again or stay home?

J: not the hospital

M: Even if that means that you will go to heaven if you stay home?

J: Yes

M: And you know that mommy and daddy won’t come with you right away? You’ll go by yourself first.

J: Don’t worry. God will take care of me.

M: And if you go to the hospital, it may help you get better and let you come home again and spend more time with us. I need to make sure that you understand that. Hospital may let you have more time with mommy and daddy.

J: I understand.

M: (crying) – I’m sorry, Julianna. I know you don’t like it when I cry. It’s just that I will miss you so much.

J: That’s OK. God will take care of me. He’s in my heart.

Like many others, I found this discussion deeply disturbing. Can a 5 year old child understand death? Should the discussion have been presented in such a polarizing perspective? Essentially, the mother asked her daughter do you want to live or die. Predictably, CNN and other news outlets relied heavily on emotion. Link: http://edition.cnn.com/2015/10/27/health/girl-chooses-heaven-over-hospital-part-1/index.html Just as predictable, people with a disability, myself included, were taken aback at how Julianna's story was framed. A website was created, Dear Juliana, in which adults with comparable conditions wrote on line letters to Julianna. Link: http://dearjulianna.com I have not thought much about this case despite the fact I found it so disturbing last year. I was prompted to think about Julianna again as there was an excellent essay in MedPageToday by Christy Duan. Link: http://www.medpagetoday.com/PublicHealthPolicy/Ethics/57625  Duan is a fourth year medical student at Albert Einstein College of Medicine and an impressive writer. I think her essay about Julianna and the thorny issue of quality of life was spot on. Duan raised the issue of disability based bias when physicians address what constitutes a life worth living. As most people with a disability can tell you the general public and health care professions often grossly undervalue the quality of our lives. People with a disability routinely receive less care. The more significant the disability the less likely one is to receive appropriate pain management and aggressive life sustaining treatment. Duan wrote:

Instead of viewing disability as something to eliminate, we should appreciate it as a normal part of the human experience which adds valuable perspective. In doing so, we can focus on the real civil rights issue of accessibility and create a better world for everyone – regardless of disability.

Rather than view people with disabilities as defective, we should recognize our world as defective. Of noninstitutionalized adults, 12.6% reported a disability and 28.2% live below poverty. People with disabilities face significantly more obstacles in daily life. Over time, they've been withheld medical care, forced to live in state institutions with inhumane conditions, excluded from public education, denied jobs, prevented from voting, and involuntarily sterilized.

Given these inequities, the fight for assisted suicide is incomplete because it creates the illusion of choice. How can one truly choose death when one doesn't have access to existing resources that allow for a dignified life? The right to die and right to live are both important struggles for autonomy. But for people with disabilities, there can be no autonomy without the right to live with assistance. In Julianna's case, these biases could have fatal consequences.

It is the last sentence quoted above that keeps me up at night. Julianna is not an isolated case. Thanks to modern medical technology the number of people with a disability, children and adults alike, who are dependent upon medical technology is ever expanding. Our social response to those with severe disabilities dependent upon medical technology in the form of respirators, nutrition via g-tubes, power wheelchairs, synthesized voicing, etc. has been negative if not out right hostile. Life with a disability is perceived to be inherently less valuable. Hospital stays are tortuous. People who cannot walk are robbed of their abilities. Medical interventions are painful. The message is not subtle—people with a disability are a burden to their families and a costly drain on our health care system. Worse, people with a disability lives are devoid of value. They cannot work. They only exist. The idea of life with a significant cognitive and physical deficit is a fearful thing. I have heard the following for many years.

“I would rather die than be paralyzed”.

“I will die before I will let someone else wipe my ass”.

“If I lose my autonomy I will happily end my life”.

“If I get Alzheimers take me out the back door and shoot me”.    

To a degree, Julianna’s story is a red herring. We are not talking about one child. It is not possible nor is it advisable to pass judgment on her parents. Parents are given a wide latitude when making health care decisions for their child as they should. I for one would never put my son’s life in such a public spot light as Michelle Moon has. The same can be said for Ashley X parents who publicly support growth attenuation yet at the same time remain anonymous. The point here it’s never about the case in question. Avoid the emotion and hysteria. Think. We humans endure, adapt, and overcome. So exactly what are we people with a disability, a class of people, enduring, adapting and overcoming? In a word, ableism. We are adapting to a different body—a body that is too often deemed as nothing more than dysfunctional and defective. We are enduring class based oppression. We are overcoming a social system that is exclusive and hostile to our mere presence. Framing disability in this manner is rational and intensely unpopular. It is far easier to rely on emotion and pass judgment on others. This is why projects such as Alice Wong’s Disability Visibility Project and Dear Julianna are important. Beyond the wheelchair, beyond the imposing medical technology you will discover something essential—a human being just like yourself.  If you don’t believe me read a few virtual letters at Dear Julianna. There is nothing to fear.

Ableism and Organ Donation: A Deadly Combination

In 1996 Californian Sandra Jensen, age 34, received a heart lung transplant. Jensen had Down Syndrome and was originally informed that heart lung transplants were not performed on any individual who had Down Syndrome. In fact no person with Down Syndrome had ever received such a transplant. Jensen's case drew national attention and a heated debate took place over who was and was not eligible for organ transplant. After a public and heated battle, Jensen did receive a heart lung transplant. This has been a recurring theme in hospitals nationwide.

Seventeen years after the Jensen case, in 2013 Amelia Rivera was denied a kidney transplant. According to her parents, their daughter was denied a transplant because she had a cognitive disability (Wolfhirschorn).  Jensen and Rivera cases are unusual in that they garnered nationwide interest. Most such stories about disability based discrimination with regard to organ transplantation go unreported. These two cases demonstrate the dark underbelly of ingrained social and medical abuse of those with a cognitive and physical disability. Simply put, health care institutions do not value the lives of those who live with profound cognitive and physical  disabilities. Study after study has demonstrated that people with a disability have significant trouble accessing health care. People with a disability, especially women with a disability, receive substandard care. Thus it comes as no surprise that when people with any sort of disability seek complex medical care on the cutting edge of modern science our presence is unwanted if not forcefully rejected.

I vividly recall the Rivera case. I shook my head in wonder. How could yet another story of organ transplant denial based on disability occur at a prestigious hospital?  What I remember the most  though was an essay written by Art Caplan who is the go to bioethicist for the press in the nation: "Serious Issues in Disabled Girl Transplant". I cannot find the link but I did preserve the following quote:

Whether the kidney comes from a cadaver donor or a living one, transplant teams always think about a set of medical facts in deciding whether to transplant anyone. Is the person able to go on kidney dialysis? Is she healthy enough to survive surgery? Does the patient have a donor who closely matches her blood and tissue type increasing the chance that the transplant will work? There is nothing special about the presence or absence of mental disability with respect to these questions. But morally, things get a little stickier."

I blanched when I read the proverbial but: "But morally, things get a little stickier". Things have been sticky for decades. Are the civil and human rights of those with a disability merely sticky problems? I think not. The word that comes to mind is ableism. In some cases ableism is lethal. All people know those that need an organ transplantation do not get such life saving surgery. The demand is greater than the organs available. People die waiting for organ transplants. While I have no doubt ethics committees and organ donation teams do their level best making ethical choices I believe deeply ingrained disability based bias remains a significant and unacknowledged problem. Without question, the best written statement on the ethical issues involved in organ donation and disability based bias was produced by ASAN. Link: http://aadmd.org/sites/default/files/D2%2012%20Ne'eman.pdf This statement is a grim read and cannot be chalked up to being sticky. Children and adults with disabilities do not appear on organ transplantation lists for good reason-- unarticulated bias is rampant. Simply put, the lives of people with a disability, especially those with a significant cognitive disability are not valued. If this is in doubt, I suggest people read the comment section on the latest case of a child with a disability being denied an organ transplant. Here I refer to Lilly Parra, a four month old infant who needs a transplant. According to various media outlets, Lilly was removed from the transplant list The transplant team told Lilly's mother she was not eligible for a transplant because she had diffuse cerebral dysfunction and might be developmentally disabled. In a letter from the transplant team at Loma Linda University Children's Hospital to Lilly's mother they wrote: "The Cardiology team performed an initial screening for suitability for heart transplant evaluation and determined that Priscilla was not a candidate for evaluation because of chromosomal abnormalities affecting longevity." In other words, people with Down Syndrome, Turner Syndrome, Jacobsen Syndrome, Wolf-Hirschhorn Syndrome  etc. are not eligible for an organ transplant.

In the Washington Post Timothy Shriver weighed in with his support for Lilly. In an opinion piece, "The Discriminatory Reason Doctors Won't Give a Baby the Heart She Needs," Shriver raised many of the points others have made who rail against disability based bias and organ donation. Link: https://www.washingtonpost.com/opinions/this-is-the-reason-doctors-wont-give-a-baby-the-heart-she-needs/2016/04/08/d766816c-fcea-11e5-886f-a037dba38301_story.html What I fear are the cases we hear nothing about. How many lives have been lost that are not reported in the press? Equally worrisome are the comments made by readers. Some comments are shocking. Below is a random sampling of nine comments that stuck out to me as representative of the long comment thread.

1. I went to the parents' change.org site. There is a photograph of the child, Lily.  
I see a child who is alive due to advanced medical support. Intubated. Eyes closed, not engaging with her environment. Her facial features are swollen, likely due to corticosteroids. A paucity of movement. This is not a child who is able to feed at its mothers' breast or hold its head upright. I am a physical therapist by profession and work with medically fragile children.  
 This child is existing. She is not fully living - a mere four months old and yet has already endured so much pain. I wonder if it would not be kinder to discontinue advanced life support and let nature take its course. I would not want my child to suffer as is this child.

2. Seriously, this is probably a very sensible decision. Given that there is a waiting list, I surmise that there are many infants waiting and that there are relatively few transplants available. Any reasonable allocation of resources would prioritize those with the greatest chance to have a normal, healthy life. It may be cutthroat, but it's probably the right thing to do. 

3. I could accept Mr. Shriver's argument if doctors could just go down to Organ Depot and pick up whatever organs might be needed by their patients. Unfortunately, that is not the case, and those organs that become available must be apportioned out in some way. This is a tragic situation, but the bottom line is that Lily's parents have made choices that they expect others to pay for in time, money, and in this case, a transplantable organ. 

4. Because of the extremely limited availability of organs, every transplant involves "discrimination." The follow-up story should be about the baby who received the heart this baby was denied. This poor infant's four month's of life have included one painful medical procedure after another. (And don't kid yourself. Fragile infants can only be given very limited pain-killer.) I wouldn't put a dog through what this baby has endured.

5. The sad reality is there is a limited supply of hearts to transplant. Using one on this child means that another child dies. Cold, hard decisions need to be made.

6. A hard but sound decision. Nobody said medical ethics was easy.  

7.  If this baby is destined to live a debilitated short life and then die, why should we pay for this effort?

8. You can't fix someone's chromosomes with a new heart.

9. Not only is this infant suffering pain, which she is too young to talk about, but she is incurring great medical expenses that the rest of us are paying for.

Several themes can be identified that are objectionable. Here is a short list.

A "normal" baby's life is more valuable than a child with complex medical needs. 

Death is preferable to a life of pain and suffering. The pain and suffering are an inevitable part of  life with a disability.

A heart is a rare commodity that should not be wasted on a child that might have a disability.

A willingness to predict the future life of an infant with a significant disability as being compromised and limited.

The forceful rejection that health care is a human right.

The assumption that life with a disability is inherently inferior.

I should have had the common sense not to delve into the comment section at the Washington Post. I did so because I know ableism has the potential to be lethal. In this latest case of organ transplantation denial for an infant with a disability it seems likely Lilly will die. This death is no doubt sad but hell, someone has to make a hard decision. I find this unacceptable. This supposedly hard decision is important because it firmly demonstrates how we value some people more than others. This valuation system has been and remains potentially lethal to people with a disability. Organ transplant teams are essentially gatekeepers. They get to decide who lives and who dies. An unenviable task--one that is obviously not free of disability based bias. If such bias did not exist I would not be writing about yet another person denied a life saving procedure because they had a disability.

Spring Has My Bones Aching

I have been experiencing a philosophical throbbing ache in the marrow of my bones in recent weeks. The ache is painful. The ache is surely not depression that has gripped me off and on in recent years. This ache is different. It is a low level ache akin to a non essential app on a cell phone that drains the battery. I am in the words of James Taylor classic song "Running on Empty." I am running on empty because I live in an ableist world. Ableists abound. Bipedal people sure do love their feel good stories. Unbeknownst to the vast majority of people who insist  on "helping" me is that ableism is the bane of my existence. Ableists can see only one thing--what I cannot do. I am not truly human but a living breathing stereotype of a life gone horribly wrong. My existence is tragic. Oh my, you are paralyzed--I am ever so sorry. "What can I do to help you?" I never reply with what I am actually thinking. When I hear "how can I help you" uttered by a stranger my first thought is "fuck off asshole". Of course I never say this to the well meaning person who is ever so eager to help me. I do not say "fuck off" because I do not want to be physically or verbally assaulted. I don't want my wheelchair ripped out of my hands as I put it inside my car. I do not want to have a door slammed in face.  In the words of Stephen Kuusisto:

The ableist isn't in the mood to hear you. He's tired of your complaining. He was trying to do something good for your kind. He was reminding TV reviewers that we have to save the poor cripples. The ableist doesn't want you to mess up his story with the facts. He remembers the good old days when the lights would dim in America's theaters and there'd be an advertisement for the March of Dimes and there were poster children and the collection of cans came around the audience row by row. 

To repeat: the ableist isn't in the mood to hear you. Ableists do not listen. They never have. Ableists did not listen to Ed Roberts when he spoke about cripple power. Ableists did not listen to Paul Longmore when he burned his book. Ableists did not listen to Mary Johnson when she critiqued Clint Eastwood and Christopher Reeve. Ableists will surely not be reading these words. Ableists do not listen because they have no interest in the lives of those who have a disability. When we cripples speak the truth, when we cripples push back it destroys the well worn stereotypes associated with disability. We cripples want what typical people want--a safe and accessible place to live, a job, and access to mass transportation so we can get to work and navigate the world. This is too much. The ableist who runs across the street to help me is in fact the enemy.  This hearty soul is a good person and provider. This ableist might be a member of the church and goes to mass every Sunday. The ableist might be a pillar of the community. The ableist could be the mayor of a small town. Few if any ableists wake up in the morning and think I will discriminate against the handicapped today. Ableism, like the ache in my bones, is far more subtle.  The ableist wants to kill me out of the goodness of their collective souls. Try and access health care and one will receive a litany of apologies. Sorry the examination table is not accessible. Sorry we have no accessible patient rooms. Sorry we cannot lift you onto the Xray table. Sorry the accessible entrance is locked. Sorry I have no idea where an accessible lab is so you can complete blood work. Sorry during the procedure your wheelchair must be left in the hallway unattended. My you have suffered so much in your life perhaps you might consider foregoing life sustaining antibiotic treatment. The ableist loves me. The ableist does not want me to suffer.

In many ways I am the model of success in the estimation of ableists. I was paralyzed, worked hard to be "rehabilitated",  and have over achieved. I have "overcome" my disability in spectacular fashion with my Ivy League PhD and series of academic jobs. I have shamed all those with a disability that are lazy slackers. I am one of them--typical in every way except one--I am paralyzed. However, I become a problem again when I open my mouth. Ableists do not like what I have to say. Oh the ableist will cluck about and think disability pride is cool. The ableist will reach into his pocket and give a donation to some kick starter fund or a adaptive sport program. Trouble arises when I start speaking about the gain associated with disability. You see my value system is radically different. I see the folly of our beloved myths about autonomy and self determination. In the words of Paul Longmore:

deaf and disabled people have been uncovering or formulating sets of alternative values derived from within the Deaf and disabled experiences... these have been collective rather than personal efforts. They involve not so much the statement of personal philosophies of life as the assertion of group perspectives and values. This is a process of Deaf cultural elaboration and of disabled culture building. For example, some people with physical disabilities have been affirming the validity of values drawn from their own experience. Those values are markedly different from, and even opposed to, non disabled majority values. They declare that they pride not self-sufficiency but self-determination, not independence but interdependence, not physical autonomy but human community. This values formation takes disability as the starting point. It uses the disability experience as the source of values and norms. 

In short, Longmore asserts that a cultural divide exists between those with and without a disability. To me the tragedy is those without a disability either refuse to acknowledge this or reject the idea entirely. The more strident one becomes the easier it is to dismiss the scholar or writer with a disability as unbalanced, a person that embraces a screed, is illogical and driven by emotion. Thus my words fall on deaf ears (pun intended) and are quickly dismissed. In contrast, those with a disability that conform to existing stereotypes associated with disability are beloved. The best and most controversial figure in this regard would be Christopher Reeve. His 1996 speech at the Democratic National Convention moved those in attendance to tears. All news outlets gushed about Reeve's speech as one of the finest statements about the human spirit. While Reeve was being lauded, Harriett Mcbride Johnson was on the convention hall worried about her personal safety and horrified by the reaction to Reeve's speech. In her memoir, Too Late to Die Young, she brilliantly describes what took place and wrote Reeve was akin to a ventriloquists dummy. Those that remember the convention recall just one thing--Reeve's prime time made for TV speech. Justin Dart, a well connected and life-long Republican who held high office during the Reagan era, spoke the next day about the disability rights and the ADA . Dart spoke in the middle of the afternoon and precious few paid any attention.

In recent years the only person with a disability that has had widely acknowledged success conveying a disability rights perspective was Stella Young. In 2014 Young gave a TED Talk "I'm Not Your Inspiration, Thank You very much". Her talk was good but it did not resonate for me. Young was a comedian and journalist. Through humor she did a wonderful job of undermining inspiration porn and stereotypes associated with disability. I am much rougher around the edges. I speak my mind and sometimes do so with force. I am also a story teller as are most academics. It is my hope that if enough of we people with a disability tell our stories the hordes of bipedal that surround us will listen some day. I know we people with a disability have come a long way. No longer are we forced into institutions where our lives were carefully hidden away. That was a giant leap forward. We have also forced people to think about the social versus medical model of disability. Yet much work remains to be done. Disability rights and civil rights are somehow perceived to be different. The ADA is widely disparaged and is often deemed an unfunded Federal mandate. In response to ingrained disability based bias that stubbornly remains ever present is perhaps the reason my bones ache. Please help me make the ableists go away. I do not want to be lonely any longer. I need you. I need my people. I need a community. Bipeds or typical others need not apply.

Airline Discrimination is Universal

In the last few months multiple news stories have appeared detailing how badly people with a disability are treated by airlines. The story that garnered the most media attention concerned D’Arcee Neal. After waiting well over an hour for his wheelchair, Neal decided to crawl off a plane.  I know the situation Mr. Neal found himself in all too well.  A cross-country flight, an urgent need to use the restroom and no one in sight. Assurances help is on the way rings hollow after a long flight and extended wait. Like Neal, I too have crawled off an airplane.  In fact every person I know with a disability who can crawl and transfer from floor to wheelchair has done the same. Those that travel often are astute enough to realize those tasked with assisting us on and off a plane are simply not going to appear. This happens every day. It happens in large international airports. It happens in small regional airports. It is commonplace. No one bats an eye. Welcome to the routine denigration of people with a disability at the hands of airlines worldwide.  

What surprised me about Mr. Neal’s experience was its news worthiness. Anyone with a significant disability knows that all airlines are hostile to their existence. Service is painfully slow and incompetence abounds. In the post 9/11 era all travelers know flying is a miserable experience. What typical travelers do not realize is that flying for passengers such as myself who uses a wheelchair, travel related services are substantially worse. I have been prompted to write about airline discrimination because yet another story of discrimination has taken place. The story originates in Toronto. Louise Kinross wrote about a family stranded at the airport because their child with a disability was not allowed to board an international flight. Link: http://bloom-parentingkidswithdisabilities.blogspot.ca/2016/04/flight-ban-is-discriminatory-says.html?m=1

I doubt this story will go viral. In fact the only media attention it garnered appeared in City News (none of the major news outlets in Toronto picked up the story). Link: http://www.citynews.ca/2016/04/21/family-denied-cathay-pacific-flight-due-to-sons-chair-for-disability/

This story resonates with me because it indicates how random and unpredictable air travel can be. It is simply impossible to know what will take place when I enter an airport and try to board a plane. I have encountered flight crews that were polite and respectful. I have experienced the exact opposite far more often—flight crews can be openly rude, condescending, and make it very clear my existence is an overwhelming burden. I have met great gate agents on departure and arrival--this is not the norm. Gate agents and those tasked to get me on and off a plane are typically rushed and I represent one thing—unwanted labor. From the moment one arrives at any given airport a gauntlet of abuse is commonplace. TSA officers can be aggressive and far too hands on. Many roll their eyes when directed to give me a “pat down”. It is obvious they detest the idea of touching my body. I have even been asked if I am contagious. More than once a TSA employee has demanded to cut open my expensive Roho wheelchair cushion. If I refuse the TSA agents will not let me pass through security. Apparently, in 2015 the TSA deemed air nozzles a security risk. In 2016 a nozzle is not longer a risk. The point here is all the planning in the world is useless. Whatever reassurances one is given verbally or in writing prior to travel are meaningless upon arrival.

The word that comes to mind is arbitrary.  Kara Melissa Sharp and her family went to Toronto’s Pearson airport excited and happy. They were going to Hong Kong.  Upon booking their tickets months ago, the Sharp’s informed the airline, Cathay Pacific, their son Sebastian had a disability and could only travel if he sat in a Convaid seat. The airline confirmed the seat was permitted on board. When the Sharp family got to the gate they were informed Sebastian could not board the plane. At issue was Sebastian’s age. He is seven years old. The airline considered Sebastian’s Convaid seat a “car seat.” The airline does not permit car seats on board for children over the age of 36 months.  The fact Sebastian is the size and weight of a much younger child meant nothing.  The fact the Sharps have flown before with the Convaid seat meant nothing. The Sharp’s were informed four accessible seating devices could be provided to people with a disability. These devices were not available and would take upper management approval to access and would have to be flown in from Hong Kong—a 15 hour flight. None of the four seating options met Sebastian’s needs. 

            The Sharp’s obviously could not endanger their son’s life on a long flight. They were forced to leave the airport without knowing how or if they could travel. The Sharp’s experience illustrates not only disability based discrimination but that when people with a disability travel we put or bodies at risk.  The job of assisting people with a disability on and off a plane has been farmed out to the lowest bidder by airlines. Employees are poorly trained and paid below minimum wage because the job is considered tip-based work.  Many of the employees tasked to assist people with a disability on and off the plane have no idea what to do. Communication is typically difficult because a language barrier exists. The barrier here is employees have no working vocabulary such as aisle chair, wheelchair, strap, lift and so forth.   Rarely if ever are FAA regulations followed when I use an aisle chair as is my norm getting on and off a plane.  Many supposedly trained employees I have encountered did not know the difference between my wheelchair and an aisle chair. The Sharp’s experience did not surprise me one iota.  Horror stories abound. Every major American airline has been sued for violating the Air Carrier Access Act. Penalties levied by the FAA are woefully inadequate.  The number of complaints is staggering and in my opinion we are not asking the right questions. For example, the Sharps were told four existing alternatives exist yet none were in the airport.  In fact the five point harness was in Hong Kong. In the City News article Sharp stated “I don’t know why it’s not on every plane. It could help other kids that are disabled. We don’t this to happen again with some one else. We feel it shouldn’t be hard for people with disabilities to travel.” I agree it should not be hard to travel for people with disabilities but hard it is--exceptionally hard.  I for one have instituted the 600 mile rule. I do not consider flying to be an option unless I am traveling more than 600 miles.  The hassles associated with airline travel and risk to my body is not worth it.

So what can be done to change an industry hostile to people with a disability. Airlines and travel writers suggest additional training can solve the problem people with a disability encounter. I am skeptical improved training will prompt change. More training only goes so far. Stephen Kuusisto stated:

Even if a large airline such as United or American offers training to its staff, it’s not enough, because the companies are subcontracting to regional airlines who may not train staff effectively when it comes to disability. There’s still a deep belief in our society that it’s someone else’s job to handle the disabled, so if there isn’t sufficient training to help counter that, you are going to get employees who don’t really understand that everyone needs to be treated equally.

Any solution is going to take decades and will require drastic changes. No doubt the airline industry will fight aggressively against any substantive change. Revenue reigns supreme in an industry with razor thin profit margins. A number of suggestions have been made which if enacted upon would greatly improve access to air travel for people with disabilities. An online petition by Vicki Jurney-Taylor requesting that the FAA require wheelchair restraint systems in every commercial aircraft has nearly 33,000 signatures. Link:

http://petitions.moveon.org/sign/wheelchair-access-on?source=c.em&r_by=8151355

If buses and trains are required by law to have accessible vehicles, why should the airline industry be held to a lower standard?

I am sure of only one thing: the airline industry will only change if it is forced to. Disability based bias is deeply ingrained in the airline industry. The Sharp family experience is commonplace. I find this frustrating in the extreme. Like many that travel, I know good people work in the airline industry.  On rare occasions I have had airline personnel be truly kind to me. I vividly recall being in Denver when an airline employee tapped me on the shoulder and asked me where I was going. I told her I was on the first leg of a long trip. She asked me to follow her and we walked to a nearby kiosk. She told me “I know you guys get screwed all the time. My brother is a paraplegic. There is no good reason the airlines cannot treat you with respect”. As she spoke she was tapping commands into a keyboard and out popped new tickets.  She told me “I upgraded you to first class for the rest of your trip. Good luck and I am sorry for the way you are treated”.

The airline industry is capable of providing good service to passengers with disabilities. For me, a good place to start would be to place great value on devices people with a disability utilize. Last year American Airlines lost Adrianne Haslet-Davis prosthesis (she survived the Boston Bombings). A prosthesis is not typical luggage—it is in fact an extension of a human being just as my wheelchair is an extension of who I am. Place a high priority on such valuable cargo. The value here is not limited to a monetary amount. If my wheelchair is broken, my life comes to a sudden and jarring stop. It cannot be replaced in a way that would not cause massive havoc. This is especially true for those who use a power chair.  Power chairs are extremely expensive—some cost as much as a car. Imagine what one would feel if they saw their empowering piece of technology going up a luggage conveyer belt on its side as the power control gets mangled. If an airline really wants to separate itself and demonstrate they value passengers with a disability create a dedicated storage compartment for all manner of adaptive gear. Wheelchairs, scooters, power chairs, walkers, and all other durable medical goods should be treated with great care. Better yet, have employees who are responsible for stowing adaptive devices like wheelchairs wear a go pro camera. My anxiety level would be virtually eliminated if I saw my wheelchair treated with care and respect. This sort of service need not be limited to wheelchair users. Musicians I am sure would be thrilled to observe their instruments be securely stowed. The same can be said about any traveler stowing an item of significant value.  And this merely highlights an unappreciated fact—disability is the king or queen of intersectionality. What benefits we people with a disability benefits all people.