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.

Inspiration as Misleading Spin

A friend sent a link to a story on PBS News Hour about a man named Adam Gorlitsky. Apparently Mr. Gorlitsky was paralyzed ten years ago. A cross county runner in high school, Gorlitsky has been using ReWalk exoskeleton for a few months. His goal was to participate in the Cooper River Bridge Run in Charleston South Carolina. The spin of the story is dreadful. Even the title of the PBS story is objectionable: "How Robotics helped a paralyzed man cross the finish line". Link: http://www.pbs.org/newshour/bb/how-robotics-helped-a-paralyzed-man-cross-the-finish-line/ I often see similar stories in local newspapers. They never deviate. A young man or woman is paralyzed. Preferably they have an athletic background to highlight the perceived tragic nature of a spinal cord injury. Despite great odds, impossible odds really, the young person "overcomes" their spinal cord injury by walking a set distance. Tears flow forth as a super human effort is made to "walk" across a finish line. The finish line can be a race, wedding, graduation ceremony or other notable event. This is merely a variation on a theme. We are supposed to be inspired. I have no doubt bipedal people are inspired. The logic is not complex or subtle: it is assumed all paralyzed people spend a great deal of their time and energy trying to walk. The fact this assumption is utterly false is conveniently overlooked by the mainstream media in its quest for readers and ratings. In short, the puff piece is  effective click bait.

My thoughts are at odds with stereotyped notions associated with a paralyzing injury. Like almost all the other paralyzed people I have met in the last 35 years, none of us have any interest in walking. On occasion I will wish my injury was lower but walking is no longer relevant to me. It is simply not a thought I ever entertain. Walking as a thing has not been of interest for over three decades. Again, like all those I know who are paralyzed we simply move on with life. We are anonymous. You will not read about us in the news because we are simply content to lead an ordinary life. In our place outliers like Mr. Gorlitsky make headlines. Media portrayals of the paralyzed walking via the exoskeleton are misleading and destructive. Here I am not chastising Mr. Gorlitsky. Insert any name in his place. The narrative is consistent: hero overcomes paralysis and walks. The PBS News Hour story is 90 seconds of feel good propaganda.

I am not opposed to the effort to cure spinal cord injury. I am not opposed to the exoskeleton. There could be medical benefit to being able to stand and mechanically walk. This is possible though not proven in a peer reviewed medical journal. I object to the way such "walking" is used by the media to inspire others. People such as Mr. Gorlitsky are being exploited by a host of exoskeleton companies that have wormed their way into rehabilitation facilities nationwide. This defies common sense but is profitable for those involved in medical technology. The lack of common sense in an era when rehabilitation post spinal cord injury is performed at warp speed is mind boggling to me. What is more important: learning mundane activities of every day living that will be of benefit to a person the rest of their life or spending time to learn how to use an exoskeleton and walking in a race. There is nothing to be inspired about here. At the PBS website, dialogue such as the below is inherently destructive and demeaning: 

ADAM GORLITSKY: My wrists, man, my wrists feel like they’re about to snap in half.

JUDY WOODRUFF: And seven hours after his journey began, the man who was once told he’d never walk again finally crossed the finish line.

(CHEERING AND APPLAUSE)

ADAM GORLITSKY: It feels really good. It feels really good. I’m speechless, man. I really am.

JUDY WOODRUFF: What an inspiration.

I am not inspired. I am upset. Here we have a man over taxing his wrists to the point he feels like they will snap in half. This makes no sense. Detailed and intensive instruction on how to care for a paralyzed body is of far greater importance. Life lessons need to be absorbed about paralysis. This is boring stuff but is the key to retaining one's good health for decades to come. Frankly, I find it hard to imagine people are naive or ignorant enough to swallow this line of feel good nonsense. Based on the loud and cheerful applause  apparently I am wrong. Let me further deconstruct the feel good aspect of this story. Mr. Gorlitsky received his ReWalk in December 2015. Mr. Gorlitsky is not a solitary person working alone but rather part of an organized effort to market the ReWalk and brand rehabilitation facilities. From the ReWalk website:

“We are so pleased to deliver a ReWalk system to Adam this week, and have him join the ranks of ReWalkers around the world,” said ReWalk Robotics CEO Larry Jasinski.  “We are proud to work with dozens of rehabilitation hospitals across the country like Roper Rehabilitation Hospital, which help expose the spinal cord injured community to this technology, and provide training so that eligible ReWalkers can have the chance to stand and walk again.”

This historic event is a testament to the quality of cutting-edge technology offered at Roper Rehabilitation Hospital, the only CARF-accredited spinal cord injury program in the Lowcountry, said Cathy Therrell, director of Roper Rehabilitation Hospital. “We are so proud of Adam and we are thrilled to be the first to offer ReWalk to persons with spinal cord injuries in South Carolina,” Therrell said.

Adam, 29, fell asleep while driving December 30, 2005, which led to a car accident that severed his spinal cord at the T9 level, permanently paralyzing him from the waist down.  In 2015, Adam was introduced to the ReWalk exoskeleton at Roper Rehabilitation Hospital, located inside Roper Hospital in downtown Charleston.  Over the course of five months, he has nearly completed his training on the ReWalk and will finalize his training with his own personal system.  Adam led a successful crowdfunding campaign on his website I Got Legs, which will pay for his ReWalk system.  Once his training is complete, Adam will be able to use the ReWalk to stand, walk and return to many activities he once did every day.

Let me put my own spin on the above. ReWalk is at the forefront of branding its version of the exoskeleton. ReWalk is a for profit corporation medical device company whose stock sells on Nasdaq (RWLK). It has locations all over the globe. ReWalk is not a charity. They are in the business of making money. Roper Rehabilitation where Mr. Gorlitsky trains two to four hours a day is like other rehabilitation centers nationwide that market the ReWalk brand name. The ReWalk for those who suddenly find themselves paralyzed is appealing. I get this. The human body was not designed to be paralyzed. Glossy hospital magazines with the photograph on the cover of a smiling young person "walking" in the ReWalk will attract patients. ReWalk and the rehabilitation center are proud of Mr. Gorlitsky.  Proud they should be as he is the poster child for the marketing campaign to sell these devices. However they are not proud enough to give him a ReWalk. He started his own crowd funding campaign to raise money and multiple news stories have appeared about him. The feel good story on PBS neglected to mention any of this. Nor did the PBS story note the price of the ReWalk device: $77,000. The sticker price for the ReWalk version of the exoskeleton is well beyond the means of virtually all paralyzed people. 

I wish Mr. Gorlitsky well. I am sure he is a good man. My words are not in any way a criticism of his effort. Instead I object to the spin used in various videos and local newspaper stories about him. What I did not read was anything beyond how he injured his spinal cord and how he wants to walk. An effort that ReWalk states will enable him to stand walk, and do many activities he once did daily. Can he not do this using a wheelchair? I expect to get a lot more bang for my buck when talking about $77,000. I could buy an Audi TTS pictured below and still be able to put over $10,000 in my pocket.

I am curious about Mr. Gorlitsky's life. What has he been doing the last ten years since his injury? Is he married? Where does he work? Where does he live? Pesky facts like these spoil the narrative. Paralyzed man walks across the finish line. Everyone is happy. Sorry but no. I am not happy. In an ideal world this is what I envision for a man like Mr. Gorlisky post spinal cord injury. Mr. X experiences a spinal cord injury. The way he is injured is not relevant. He is medically stabilized and sent to intense and extended rehabilitation. He given a crash course on spinal cord injury: how to care for his body, top notch urological and skin care is a core component of rehabilitation. He is given detailed information about the range of wheelchairs that exist. Toward the end of rehabilitation he enters into a parallel program designed to employ him post injury or send him to college or job training best suited to his skills. He is exposed to the world of adaptive sports and learns about the ADA and disability rights. If interested, he will be provided with the wheelchair that best suits his needs and if desired he is given a sit ski, hand cycle, kayak another type of adaptive sports gear.  If sports is not of interest inclusive dance and adaptive yoga are viable options. After he leaves rehabilitation he enters into a post rehabilitation half way house. There among his newly crippled peers he is immersed into disability culture and along with the other men and women who are learning to adapt post spinal cord injury. While at the half way house he explores the world as a wheelchair user. He gets on a plane, train, bus and learns how to drive with hand controls. Modifications to his home or apartment are made or he finds a new place to live. Once employed, able to drive or access mass transportation he leaves the half way house. All this costs less than $77,000. Most importantly, he understands he is not alone, is gainfully employed, knows some people that have experienced a life altering injury, and is ready to face a hostile world. The trouble with my model of life post injury is that it does not sell well. My brand does not make people feel good. It is not particularly profitable. There is no inspiring story line. My vision is akin to what Ed Roberts described as cripple power. He famously wrote: “I’m tired of well meaning non-cripples with their stereotypes of what I can and cannot do. Directing my life and my future. I want cripples to direct their own programs and to be able to train other cripples to direct new programs. This is the star to something big — cripple power.” 

My point is that modern day rehabilitation has lost its soul and big business is making a profit selling paralyzed people a false set of goods. People should not be used for inspiration and be cheered on in a misguided attempt to walk. The symbolism involved in such an effort alone is destructive. A wheelchair is a powerful way to navigate the world. A wheelchair is life altering technology. Walking is not the only means of navigating the world. We should empower people who experience a spinal cord injury and not profit off their injury. This was exactly what Ed Roberts had in mind. I value the utility of cripple power. I revel its warm embrace. 

Handicapped Bathroom Stalls

I got angry today.  I feel bad--sort of. When I am on Syracuse campus all day I lose a lot of time. I lose much time simply waiting. I spend a lot of my waiting time in the building where I teach. The waiting is typically spent outside the bathroom. Every day I work I wait outside the bathroom. I wait because there is only one accessible bathroom I can use in the building. This is not unusual. I routinely wait to use an accessible bathroom or accessible stall. As I have joked before, I think constipated bipedal people are magnetically drawn to the single accessible bathroom I can enter.

What set me off today was a minor misunderstanding with my son. We are sharing my car. I was on time to see him but he was in the wrong location and I lost ten minutes of my time. I arrive on campus annoyed and with much to do. I did not eat breakfast and go directly to a nearby campus cafeteria. Before I order my sandwich I need to go to the bathroom.  I enter the accessible accessible bathroom--three stalls are empty. The only stall I can enter is occupied. The person using the stall is oblivious. I can hear the music ten feet away from his ear buds. This is a lost cause. I take the elevator to the second floor. Three empty stalls. The one I can enter is occupied. Another person listening to very loud music via ear buds. I get in the elevator yet again. Up to the third floor. Another three stalls empty. The stall I can use is occupied. Another case of loud music via ear buds. Up to the fourth floor I go. Three empty stalls. Yet again the only stall I can get into is occupied. I am beginning to think every constipated male on campus all agreed to deficate at the same exact time. However, there is hope on the fourth floor. No ear bud noise in the accessible stall. I wait. I wait some more. I make some not so subtle noise. I cough. I make it pretty obvious I am waiting for the stall. At this point I have had it. Four occupied toilets on four different floors. All stalls occupied by men who seem to have all the time in the world. So, I lose it. I bang on the door like a cop. "How long are you going to be?" Silence ensues and then the reply with a sarcastic tone: "I don't know. I don't time how long I take to shit".  Great a smart ass. "You are in the only accessible stall and I need it now". My tone is not nice. My voice an octave too high. The reply "Well, too bad for you. I think now I will be a while." This is not the expected answer. Indeed, next thing I know I hear ear bud music at the highest volume possible.

I take a deep breathe. I try to be the Zen cripple. This inconsequential disrespect and utter lack of attention to the life of people with a disability plays out in an infinite number of ways. I am a respected scholar yet this does not help me when I want to use the rest room. If I complain I am a crank or an inpatient jerk. The lack of thought is not intended bias. None of the men using the accessible stall planned on inconveniencing me. It just happened. Here is the rub--it happens all the time. The delivery man who parks in handicapped parking. The restaurant with tables so close to each other it is impossible to navigate the dining room. The locked handicapped entrances. The side entrances with a bell and sign "please ring bell for service". The elevators and wheelchair lifts that are either filthy dirty or filled with cleaning supplies. The stadiums with substandard handicapped seating. The multiple gas stations that have a non conforming ramp in the back that is unlit at night. The minor transgressions that when pointed out is met with "Well, no one has ever complained before".

Life with a disability is an exercise in frustration. It takes me longer to do the ordinary. Make my bed, shower, get in and out of the car. etc. My time is routinely sucked out the window. This is my norm. The bipedal hordes that rule the land are oblivious to wheelchair access. This lack of thought, the ignorance and lack of care is unacceptable. I suspect I waited at least 45 minutes today. The wheelchair lift into the building I work in takes one full minute to close. This "safety feature" results in two minutes wasted every day. Ad in waiting for bathrooms, driving around trying to find an accessible place to park, looking for obscure accessible entrances all take up my time. Today I had to deal with a smart ass in an accessible stall that decided to be snarky. Just unacceptable. It is also inconsequential. If this is my main complaint I am way ahead of the game we call life. But am I? Am I really ahead? Am I ever typical? The sad answer is no. There is no place outside of my own home I can let down my guard. I really cannot trust anyone. Today, this made me weary and angry. I doubt I will live to see the day when the norm is to value people with a disability. To have a default nonthinking bipedal person go for the narrow stall and unwittingly leave the accessible stall free.

Social Isolation in Academia

The AWP is back in the news. Forget the acronym. It does not matter. Replace the AWP with AAA, ASA, APA, ASBH etc. The point is virtually all academic societies and their annual meetings in cities across the nation present needless obstacle to inclusion. The AWP simply happens to be the latest organization in the news for its discriminatory practices toward scholars with a disability. Link: https://www.insidehighered.com/news/2016/03/28/writing-program-association-continues-debate-access-members-disabilities As a young scholar, I believed over time the exclusion of scholars with disabilities would fade away. During my career I have attended academic meetings year in and year out. I have given talks at prestigious universities. I have also given talks at conference hotels across the country. All academic organizations were forewarned a bad cripple was coming. Think of the Yellow Brick Road--ding dong the wicked witch is on her way. Obstacles abound despite the fact organizers know well in advance I use a wheelchair. Inaccessible speaking platforms, inaccessible podiums, inaccessible technology, inaccessible hotels, ramps grossly out of compliance and dangerous, inaccessible buildings, no handicapped parking, no access to mass transportation, inaccessible hotels, etc. You get the point. The repetitive  refrain has not changed: "I am so sorry. I was told the podium was accessible". I hear sorry often. Sorries abound. Yet change is illusive.

Over the past two decades I have tried hard to advance the rights of scholars who have a disability--any disability. Part of this effort was self centered. I advocate for myself. I have no choice but to do so. The vast majority of academic organizations ignore access and disability issues. I am repeatedly told "sorry but our organization is not responsible for access. Call the hotel, they will have all the information you need". Some organizations belittle scholars with a disability.  Last year the AWP rejected all panels proposed that had a disability based focus. This year the AWP belatedly and half heartedly created a disability caucus. This prompted Stephen Kuusisto to write:

The national conference of the Associated Writing Programs or AWP in the year 2016 failed to include any disability literature among its hundreds of literary panels and presentations. Imagine had they failed to include any gay, lesbian, bi-sexual, trans-sexual, queer, gender fluid presentations, or a single panel devoted to writing by people of color or women? The outcry would be considerable, but not so with disability—a matter I consider shocking, not because able bodied people can’t conceive of disablement as a profound and universal element of human life, but because, (and here I shall echo Marcuse) there is no truth in art that does not break the monopoly of established reality). Gay reality is crippled reality; black reality is crippled reality; feminist reality—you get the picture.

So why does the national conference of the creative writing programs in higher education “not” get disability as an artistic seed bed, and perhaps the most inclusive of all marginalized categories, insofar as nearly everyone will have a disability at some point in this life? Why indeed. The answer lies in a paternalistic view of physical difference, a 1970’s model of the disabled as outliers who probably cost lots of money to include at the university; who must have a “special” office to handle their requests for whatever moist and inconvenient things they need. The rest of us able bodied professors fairly shiver at the prospects. These people have breathing tubes, motorized scooters, talk funny, or don’t talk at all. They have colostomy bags and crutches and sometimes they have wigs. They bring “down” the youthful, peppy, yoga-centric, aerobically charged, glossy entitlement of diversity filtered through the optics of good looks and vitality. Why a couple of years ago at their conference in Seattle, they hosted a poet with a disability who said publicly she’s not interested in that identity—would prefer to be understood as a real poet.

You see how it works? Real literature is GQ and Vanity Fair; it’s happy; and we all know those disabled writers can’t be happy—why in fact, disability is so hard, most of us university sponsored, middle class creative writer types imagine if we’re ever going to be disabled, well, by God! we shall commit physician assisted suicide! Do I gild the lily? Am I stuffing the owl? Perhaps. But leaving disability out of the conference, and then, pretending to afford something like awareness by hastily creating a “disability caucus” where the disenfranchised crippled writers can meet, and maybe even express their concerns, well, this is a kind of Uncle Tom business. When I hear separatism I know it for what it is.

Separate. Always separate and special. This goes against the grain of cherished American ideals foremost among them the idea we are all born equal. While one and all know this is not true it is a myth we Americans cherish. Here we are 25 years post ADA and disability rights remains an unpopular notion. The law has utterly failed to resonate with the American public. There is no social demand for access. My little town in Central New York is lovely. Old churches and buildings have been loving restored and impeccably maintained. The town is picture post card perfect. This perfection ends if you use a wheelchair. Most stores on the main drag have a step to enter. I cannot enter most of the shops. A step, one step is preventing me from enjoying my town and giving my business to local shops. The ADA deems something like a single step readily accessible. Almost all the shops in town could easily be made accessible. All the academic conference I attend could easily be made accessible. There is a lack of will and knowledge to do so. You see special is okay provided it is not imposed. Even more important is that access be inexpensive because it is not valued. The ADA failure is not legal but rather social. One example will suffice. Ten years ago the Subway shop  in my town was sued because a step prevented wheelchair access. The case progressed at a glacial pace. About a year ago a settlement was reached. The step in the front would be replaced by a ramp. A ramp that would be welcomed by teens, college students, mother's with baby carriages, bikers, and many others. A ramp, however, might mar the architectural heritage of the town. The unwanted ramp is being imposed on the town by the Federal government and that damn ADA law. So what did Subway do? They made the bathroom accessible and did not ramp the entrance as agreed upon in the settlement with the DOJ. The ramp empowered those that did not want it to undermine the ADA. "The ADA is a joke! The government forced us (insert outraged local shop owner) to make an accessible bathroom in an inaccessible store". Ignored is the fact the Department of Justice required said ramp. A lack of will. A lack of desire. A lack of thought. In example of cultural ignorance. When I complain, when I point out the lack of access or, worse yet, assert my civil rights I am bitter. I am an angry man. Think Ralph Ellison. Think Jim Crow. Advocating for disability rights is a screed. I am the hopeless and wearisome narcissist. Yet it is never about me. It, meaning equal rights and a fully inclusive physical environment, is about the person with a disability coming after me long after I am gone. It is about screen readable software for the blind. It is about ASL for the deaf. It is a quiet room for some within the neurodiveristy community. It is about different means of communication for those who have are not verbal. It is about cutting edge technology for amputees. It is about the inclusion of those with profound physical and cognitive disabilities. It is about the elderly and those that age into disability. It is about those with chronic illness. It is about Ashley X and the bodily integrity of those who cannot advocate on they own behalf. It is about those in a minimally conscious state. It is about the largest disenfranchised group in this nation.

Let me provide an incentive and forewarning. We people with a disability abound. We are a distinct class of people. The law is solidly on our side. While I the poster boy for the universal wheelchair logo a disability may or may not be visible. Be careful. We are among you. And more to the point any human being can become one of us. Cripples are born and some are made by happenstance. Don't trip and break your head. Don't get old. Don't get sick. For if you do, and it will happen eventually if you live long enough, you will become one of my people. For me, there was a decade long decent into disability as a young man. The typical body I had is long gone. For others it can happen in the blink of an eye. I urge those without a disability to be narcissistic. Embrace my screed. Don't do it for me. Do it for yourself. Think of it as insurance. Disability is part of life and human evolution.