When Christopher Reeve was paralyzed in 1995 I grossly underestimated the impact he would have on the public perception of disability, especially spinal cord injury. For many years, I refused to criticize anything he said or did. I had much to complain about. Between 1995 and his death in 2004 Reeve was obnoxious and selfish in the extreme. His life revolved around one thing--cure for paralysis. The general public, mainstream media outlets and his Hollywood friends all hailed Reeve as a "hero". In sharp contrast, I kept thinking that in time he surely he will get it--it being the social implications of disability. Surely he would begin to advocate not just for a cure to spinal cord injury alone but social equality. Experience and exposure to other people with a disability I was convinced would help Reeve see the light. This never took place. Hence, by 2002 I could not be silent. I published a nasty article, "Wishing for Kryptonite", in Ragged Edge. I blasted Reeve and have not stopped blasting him. Reeve was an unmitigated disaster for disability rights and created what I call the Reeve School of paralysis. Simply put, the Reeve School of paralysis perceives disability to be a personal tragedy. A spinal cord injury is a personal catastrophe. Life is bifurcated. There were the golden years before paralysis when life was perfect and the tragic, compromised, and diminished life after a spinal cord injury. Reeve would "suffer" with dignity. He would show great courage in the face of a horrific tragedy. It helped that he was good looking and stoic. He played this part to perfection. But wait there is more! Reeve, thanks to his fame before his injury, became an icon. He was the perfect cripple. He was not like other paralyzed people who wallowed in self pity. He wanted to be cured. He dedicated his life to cure. He founded the Reeve Foundation. He lobbied on behalf of other paralyzed people. He embraced high tech medical care--care meaning research for a cure and emphasis on dubious clinical trials for cure. He became a cure junkie and for this he was beloved by all--all those that knew nothing about disability.
Reeve cemented an antiquated perception of disability. Disability is a fate worse than death. It is a singular experience, a tragic experience. The "job" for all people with a spinal cord injury is to seek a cure to paralysis. No risk is too great. No procedure too risky. No amount of money is too much. No matter what the focus is always on walking. High tech medicine is embraced even if it is shockingly expensive and impractical. Think the exoskeleton. Reeve also helped establish the idea that if we cannot be cured today then our paralyzed bodies must be maintained in good working order. This is a full time job unto itself. It can require a staff of people as Reeve had. But it requires total dedication. A family, job, and social life is of secondary importance. The fact this is an economic impossible for virtually every paralyzed person is never discussed or even mentioned.
In sharp contrast to the Reeve School of paralysis, I come from the old school of paralysis circa 1978. The school of paralysis I attended was hard. We did not talk or think about cure. Doctors were brutally honest. You will never walk again. There is nothing to be done. You are paralyzed and that is the beginning and the end of the story. Good luck and off to rehab you go. Rehab back then was hard core and extensive. It was a morbidly depressing environment. There were few if any pretty rehab centers. Rehab in 1978 was usually one floor in a critical care hospital. I was on the 8th floor of the Neurological Institute at Columbia Presbyterian Hospital. The floor was a pit and a testament to all that could go wrong with the human body. The only bright spot was the physical and occupational therapists. I could have a normal life paralyzed but I had to relearn everything. The therapists were all young and very pretty. This certainly helped me work hard. I wanted to impress them and get away from rehab as soon as humanly possible. I was driven and the therapists were serious task masters. I learned how to dress. I learned how to get my wheelchair in and out of the car. I learned how to pop over and up curbs. I learned how to take care of my skin. I learned how to make transfers of every sort. All this was mundane, boring and time consuming. It was exhausting physically and mentally. However, there was one relentless message sent--it was the core of rehab circa 1978. You must be as independent as humanly possible. Not spoken but implied was my diminished social status as a paralyzed person. Hence, the worst thing I could ever do was ask for help. Asking for help was tantamount to failure. If it took an hour to get dressed so be it. Asking for help was out of the question. If you ever ask for help you will make all people with a disability look bad. This independence was deeply ingrained. For decades I accepted this as gospel. I would rather die than ask for help. Help was an acknowledgment of weakness. If I asked for help I would be less than human, a disgrace to every other paralyzed person.
In looking back, this hard core approach to rehab was archetypically American. A celebration of independence taken to an extreme. The strange thing is it worked for a driven person such as myself. For others, it was too much. I did not think about the people who could not cope for a long time. I kept my head down and worked as hard as humanly possible. Fast forward 30 years and I am divorced and have a teenage son. On a lark my son and I went skiing at the invitation of my niece Maggie who, at the time, was an intern at Vermont Adaptive. That weekend was stunning. A veritable revolution had taken place in adaptive sports. The gear, sit skis in particular, were cool. It was obvious given time and effort I could ski. This technological revolution paled in comparison to the social revolution. I saw paralyzed people asking for help! Indeed, it was obvious that I would need help to be physically more active. This dichotomy was hard for me to wrap my brain around. Asking for help in my mind was inherently bad but skiing is fun and liberating. I have learned much skiing and later kayaking. What I have learned has less to do with adaptive sports than the profound way the social perception of paralysis has changed as well as how we approach spinal cord injury. I have come to reject both the rehab model I experienced circa 1978 and the Reeve School of paralysis as unhealthy extremes.
I have long believed we need a far more nuanced understanding of paralysis in particular and disability in general. Focusing on an extreme form of independence that I experienced is as counter productive as the Reeve School of paralysis. But how do we foster a more nuanced understanding of disability? I see no hope among newly paralyzed people. The rehab newly paralyzed people receive is austere at best. They are set up to fail. By fail, I mean they are inadequately trained in how to care for their bodies and quickly experience complications and are hospitalized again and again. The result is that they often perceive themselves to be singularly unusual. Divorced from the larger community of paralyzed people, especially old timers such as myself and disability rights activists, this an understandable reaction. It is also decidedly wrong. This is where I worry the most. The implications are deadly. For example, Chritina Symanski believed:
"Unless you've been in my shoes, I have a hard time absorbing any justifications, or reasonings as to why I MUST, or SHOULD continue to suffer. I'm not just referring to "quadriplegics" in general. I'm talking about women, with high level complete spinal cord injuries, that are in their thirties, that were injured in their twenties, that have no children, that lost a career, that have IBS, and that suffer from daily bouts of autonomic dysreflexia. If you are one of the few people on the planet that fit in that category, by all means, share your insight, and advice on coping with me.
If you don't belong in my boat, please save your judgement, and just take a moment to think what you might do in my situation, and how you might want to be treated... Imagine needing to ask someone for every need; from scratching an itch, to brushing your teeth, to tying your shoes. I can guarantee you, from experience, that your worst fantasies, would not do justice, to the reality of actually living this way. I have lived on both sides of the fence, both as an able bodied adult, and as a disabled adult. I know exactly what I'm missing out on, and how much better life could be."
If I followed Symanski's logic, no medical expert and the vast majority of paralyzed people could not comment or offer advice on how to cope. She was an island of despair unto herself. This enabled her to embrace her suffering and the misery of disability. She clearly fits within the Reeve School of disability. Worse yet, Symanski is lauded for her suffering. This is particularly convenient as it lets society off the hook. We do not allocate resources on the mundane like appropriate support services. Instead we laud the exoskeleton, search for a cure, and other dubious ventures that have no practical benefit. No one wants to discuss why young people with a spinal cord injury often end up in a nursing home. This does not fit the cultural script we have created. And here is where a nuanced understanding of disability is within our grasp. We need to develop and foster a positive approach to life after disability. we need a new script or narrative. I am not suggesting a "disabled and proud" approach as the activists posters proclaim. This does not resonate with people who have no experience with disability. We need to sell the sub basic fact that disability is a part of life. At some point in our life disability will touch our lives or the lives of our family members. Thus it is in all our best interests to insure homes, transportation, and the work place are accessible to all. By accessible I am not talking about architecture alone. I mean we accept disability is an inherent part of the human condition. For some it will have a profound impact on their life. For others it may be a transient state. But it an integral part of life, especially as we age.
Wednesday, February 15, 2012
Monday, February 13, 2012
Skiing Again!
I am in Vermont and skiing. I have skied three times. Day one was great. Day two a bust. Day three awesome. This is the very last aspect of my life to be reclaimed since my wound healed. I am not happy, I am thrilled. I am also in bad shape. My conditioning is not good. I cannot ski all day yet. I made five runs today. I got better each time. My speed increased, I was linking turns well and gained a huge amount of confidence. Will ski tomorrow morning and head home. I am also teaching at Purchase College. I truly enjoy teaching there. The students are smart and appreciate the value of an education. I am adjusting to the evening class that ends at 9:50pm. And yes I hold them to 9:50pm or darn close.
Been thinking of a new post while I am driving to and from Vermont. I think well when driving. For some time I have been feeling divorced from newly paralyzed people. They don't seem to get it. It meaninig equality. Some newly paralyzed people think they are unique unto themselves. Zero thought is given to where ramps and elevators came from or that there was and is a civil rights battle to be waged. I get this, it takes time to get up to speed and learn how to adapt to a paralyzed body and the social implications of wheelchair use. What I do not get is the unique sentiment. I refer to this as the Reeve school of paralysis. There is an unwillingness to accept paralysis and move on with life. Part of this is the fact the cure industry has its hooks into the rehabilitatioin n business. Not sure where blame lies but I perceive newly minted paralyzed people as set up to fail. There is far too much hand holding. I do not advocate stepping back in time where the mentality was sink or swim. Too many sank and were never heard from again. What strikes me is that we paralyzed people are not unique. We share common social, economic, and political barriers. Yes, no two people are paralyzed the same way. But paralysis is the least of problems. We old timers get this, especially those active in the struggle forequal rights. And here is where being unique hurts us. We are divided and easily oppressed. We must be united politically. We must be hard assessing. We must assert ourselves and advocate for all people with disabilities. This philosophy is the antithesis of the most wellknown paralyzed person in recent memory, Christopher Reeve. More on this in my next post.
Been thinking of a new post while I am driving to and from Vermont. I think well when driving. For some time I have been feeling divorced from newly paralyzed people. They don't seem to get it. It meaninig equality. Some newly paralyzed people think they are unique unto themselves. Zero thought is given to where ramps and elevators came from or that there was and is a civil rights battle to be waged. I get this, it takes time to get up to speed and learn how to adapt to a paralyzed body and the social implications of wheelchair use. What I do not get is the unique sentiment. I refer to this as the Reeve school of paralysis. There is an unwillingness to accept paralysis and move on with life. Part of this is the fact the cure industry has its hooks into the rehabilitatioin n business. Not sure where blame lies but I perceive newly minted paralyzed people as set up to fail. There is far too much hand holding. I do not advocate stepping back in time where the mentality was sink or swim. Too many sank and were never heard from again. What strikes me is that we paralyzed people are not unique. We share common social, economic, and political barriers. Yes, no two people are paralyzed the same way. But paralysis is the least of problems. We old timers get this, especially those active in the struggle forequal rights. And here is where being unique hurts us. We are divided and easily oppressed. We must be united politically. We must be hard assessing. We must assert ourselves and advocate for all people with disabilities. This philosophy is the antithesis of the most wellknown paralyzed person in recent memory, Christopher Reeve. More on this in my next post.
Wednesday, February 1, 2012
No Celebrating Here
On January 13 a post entitled Brick Walls at Wolfhirschhorn.org caused a media frenzy. I wrote about this as did many others devoted to disability rights. The story puzzled me from its inception. Organ transplants are rationed and people die waiting for organs. I knew that disability bias exists when deciding who does and does not get a transplant. I accept this as a given. I assume if I ever needed a transplant I would be denied based on the mere fact I am paralyzed. Yet people seemed shocked when a CHOP denied a cognitively disabled child an kidney. The denial was based on her quality of life and cognitive ability. In my estimation, the only thing that was different about the Rivera case was how blunt the doctors were with the parents. The subsequent uproar and firestorm across disability related blogs is a sign of just how fast news can travel. Thus the Rivera case differs in one key way from Sandra Jensen circa 1995. A supposed resolution with the hospital has quickly been reached.
My depressing take on the Rivera case is that one child will benefit. Once the media attention wanes, and it has already waned, hospitals and transplant teams will quietly go back to business as usual. Nothing has changed--disability bias does not go away overnight. It is alive and well in hospitals across this country. I have no doubt CHOP will institute new policies--those policies will not change the decision making process but rather make the language it uses more palatable. Much lip service will be given to disability rights. My gloomy assessment diverges from the latest post at wolfhirschorn.org entitled "A Life Changing Event..for the Greater Population". I quote:
"The power of social media continues to thrive. The experience of this story going viral is a unique event that we are likely to be a part of only once in a lifetime. As the story continues to buzz, it is quickly moving into a political and public forum. Senator Sweeney from New Jersey has already pushed forward action on transplant rights for the disabled, and CHOP has made contact with the state to address this matter. The wheels are in motion for change at a larger scale.
The outcome of Chrissy posting her article will likely end up with the best possible solution for Mia. Mia will get the best treatment available, whether it is at CHOP or another hospital. In addition to Mia receiving the best of care, rights for the disabled will continue to gain steam and recognition. Discrimination against our kids needs to be addressed and maybe this is just what we needed to see happen.
The success of this event can’t go forward without recognizing our community as a whole. Because of all the contributors, parents, wolfhirschhorn.org followers and advocates of our kids, this wave would never have happened. Thanks to all of you for being a part of a building trend to give our kids the stage they deserve.
And finally, check out some of the vitals of the story…they are quite amazing:
Average site traffic per day, 3 weeks before the article went viral: 165 visits/day
Total site traffic since the article was posted 2 weeks ago: 387,000 visits
Largest source of referrals on the day the story went viral: 91% from Facebook, 2% from Change.org".
No doubt social media played a key role in the Rivera case. And there is no doubt the outcome for the child in question is far more positive than it would have been without the national attention. But I do not share the belief that larger scale changes will take place any time soon. The decision and process involved in who receives an organ is inherently flawed and biased. We can only do our best to minimize the bias. This decision making process is complex, nationwide in scope; political, social and economic variables all come into play. To suggest otherwise is simply naive. Organs are rationed--this is a fact. When it comes to rationing I have no doubt people with a disability will be at the bottom of the priority list. This is a social reality that has not changed measurably in my life time. Perhaps I am just cranky. This winter has been a disaster. Warm temperatures and no snow have left me frustrated in the extreme. Then again, I am a realist. I have experienced the brunt of prejudice for 34 years. I do not think disability bias will disappear because people flocked to Facebook and signed an on line petition.
My depressing take on the Rivera case is that one child will benefit. Once the media attention wanes, and it has already waned, hospitals and transplant teams will quietly go back to business as usual. Nothing has changed--disability bias does not go away overnight. It is alive and well in hospitals across this country. I have no doubt CHOP will institute new policies--those policies will not change the decision making process but rather make the language it uses more palatable. Much lip service will be given to disability rights. My gloomy assessment diverges from the latest post at wolfhirschorn.org entitled "A Life Changing Event..for the Greater Population". I quote:
"The power of social media continues to thrive. The experience of this story going viral is a unique event that we are likely to be a part of only once in a lifetime. As the story continues to buzz, it is quickly moving into a political and public forum. Senator Sweeney from New Jersey has already pushed forward action on transplant rights for the disabled, and CHOP has made contact with the state to address this matter. The wheels are in motion for change at a larger scale.
The outcome of Chrissy posting her article will likely end up with the best possible solution for Mia. Mia will get the best treatment available, whether it is at CHOP or another hospital. In addition to Mia receiving the best of care, rights for the disabled will continue to gain steam and recognition. Discrimination against our kids needs to be addressed and maybe this is just what we needed to see happen.
The success of this event can’t go forward without recognizing our community as a whole. Because of all the contributors, parents, wolfhirschhorn.org followers and advocates of our kids, this wave would never have happened. Thanks to all of you for being a part of a building trend to give our kids the stage they deserve.
And finally, check out some of the vitals of the story…they are quite amazing:
Average site traffic per day, 3 weeks before the article went viral: 165 visits/day
Total site traffic since the article was posted 2 weeks ago: 387,000 visits
Largest source of referrals on the day the story went viral: 91% from Facebook, 2% from Change.org".
No doubt social media played a key role in the Rivera case. And there is no doubt the outcome for the child in question is far more positive than it would have been without the national attention. But I do not share the belief that larger scale changes will take place any time soon. The decision and process involved in who receives an organ is inherently flawed and biased. We can only do our best to minimize the bias. This decision making process is complex, nationwide in scope; political, social and economic variables all come into play. To suggest otherwise is simply naive. Organs are rationed--this is a fact. When it comes to rationing I have no doubt people with a disability will be at the bottom of the priority list. This is a social reality that has not changed measurably in my life time. Perhaps I am just cranky. This winter has been a disaster. Warm temperatures and no snow have left me frustrated in the extreme. Then again, I am a realist. I have experienced the brunt of prejudice for 34 years. I do not think disability bias will disappear because people flocked to Facebook and signed an on line petition.
Monday, January 23, 2012
Love the Irony
I have never met Penny Richards but admire her posts at Disability Studies, Temple University blog. When I got into the blogging world the Temple University blog was one of the first I read. I still read it regularly years later. I particularly like the historical entries--figures in disability history I never heard of. The Temple blog does not comment enough on contemporary issues. However when someone such as Richards does write I take note. And I just read the below. I absolutely love it! Commenting on the transplant controversy that has so many people upset Richards wrote:
"So let me get this straight...
If parents walk into a children's hospital and ask for a highly unconventional series of surgeries to remove healthy tissue and organs, limiting their daughter's growth... a series of surgeries that would never be performed on a nondisabled child... the answer is, fine, because she's developmentally disabled?
BUT, if parents walk into a children's hospital and ask for a very standard surgery to treat an organ that isn't functioning properly, a surgery that will improve their daughter's health and very probably prevent an early death... a surgery that is routinely performed on nondisabled children... the answer is no way, because she's developmentally disabled?
Got it."
Not many outside the world of disability get it. The transplant team did not get it. Growth attenuation doctors in Seattle did not get it. Secondary schools do not get it. Businesses do not get it. Universities do not get it. But some of us do get it. And let me tell you those of us who get are not liked. We are considered uppity. I have been told repeatedly that I do not have a chip on my shoulder but a boulder. Good. When I am considered equal to those that walk rather than use a wheelchair said boulder will vanish. How dare I expect to be treated equally! How dare I expect to travel without a never ending hassle. How dare I expect the lift on a bus to work. How dare I expect to be employed. And now I can add how dare I receive a transplant.
"So let me get this straight...
If parents walk into a children's hospital and ask for a highly unconventional series of surgeries to remove healthy tissue and organs, limiting their daughter's growth... a series of surgeries that would never be performed on a nondisabled child... the answer is, fine, because she's developmentally disabled?
BUT, if parents walk into a children's hospital and ask for a very standard surgery to treat an organ that isn't functioning properly, a surgery that will improve their daughter's health and very probably prevent an early death... a surgery that is routinely performed on nondisabled children... the answer is no way, because she's developmentally disabled?
Got it."
Not many outside the world of disability get it. The transplant team did not get it. Growth attenuation doctors in Seattle did not get it. Secondary schools do not get it. Businesses do not get it. Universities do not get it. But some of us do get it. And let me tell you those of us who get are not liked. We are considered uppity. I have been told repeatedly that I do not have a chip on my shoulder but a boulder. Good. When I am considered equal to those that walk rather than use a wheelchair said boulder will vanish. How dare I expect to be treated equally! How dare I expect to travel without a never ending hassle. How dare I expect the lift on a bus to work. How dare I expect to be employed. And now I can add how dare I receive a transplant.
Friday, January 20, 2012
Disability, Bioethics and Transplantation: Problems Abound
There is a long standing tension between bioethicists and disability rights activists and scholars. The exchanges between bioethicists and disability studies scholars in press and in person are polemical and often mean spirited. These exchanges transcend routine and strongly held scholarly differences. Simply put, there is a deep rooted personal and intense dislike between disability scholars and bioethicists. For example, Stephen Drake commenting on Peter Singer wrote that his "work as it pertains to euthanasia, infanticide, and personhood--the idea that some human beings are persons and others are not--is riddled with sloppiness and even dishonesty. To be fair, those traits aren't Singer's unique domain in the field of bioethics. Bioethics is a field that doesn't seem to demand intellectual integrity and honesty from professionals within its fold". Drake's harsh words are well within the norm. I get Drake's animosity--it is hard for any person with a disability to not take comments by bioethicists to heart.
Bioethicists and disability scholars have radically different views on topics such as growth attenuation, the medical treatment of infants born with disabilities, prenatal testing, life support, and end of life issues to mention a few hotly debated subjects. I hold a pessimistic view of whether bioethicists and disability scholars will ever be able to work together. Distrust runs too deep in spite of the fact bioethicists have made efforts to consider disability as a central issue. Some scholars such as Alicia Quellette in her book Bioethics and Disability contend "disability is now part of the conversation" and no longer a "shadow issue". I think this observation is far too optimistic. I also do not share Quellette's belief that bioethics as a "field is ripe for a change". In my estimation, bioethicists as a group have utterly failed to grasp much less try to overturn the gross injustices people with a disability routinely encounter. Bioethicists pay lip service to what they call the "disability perspective. Such lip service was on display this week when I read and heard comments by Art Caplan about the Amelia Rivera case (According to her parents Amelia Rivera was turned down for a kidney transplant because she has a cognitive disability). Caplan is the Director of the Center for Bioethics at the University of Pennsylvania and seems to be the go to guy when the mainstream press needs a sound bite from a bioethicist. When the Rivera case spread across the internet like wild fire I was disinterested. I was not at all surprised the Rivera family was told their daughter was not a candidate for a kidney transplant because she was "retarded"--not even if the kidney came from a family member. The bias the Rivera family encountered was nothing new to me or parents of children with profound cognitive disabilities. In fact I would characterize the bias against people with a physical or cognitive disability as routine, ordinary even, in the health care system. And this is why Art Caplan gained my attention; in "Serious Issues in Disabled Girl Transplant Case" he wrote just enough to appear unbiased and supportive of people with a disability. For example, Caplan noted "The issue of disability and access to a life-saving transplant merits serious reflection". He continues:
"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."
The phrase "morally things get a little stickier" is deeply problematic. Caplan correctly notes the transplant team needed to consider who would care and manage post surgery medications for a person with a cognitive disability. Transplant teams need to consider the long term survival of a person with a cognitive disability who may present other daunting medical conditions. Transplant teams must consider whether a person with a cognitive disability lives in an institution. All these points are valid. Yet I consider his contention that "each case involving a disabled person has to be looked at individually" misleading. If each case was looked at as Caplan suggests why did most transplant programs refuse to even consider a person with a cognitive disability until the mid 1990s. More to the point why are people with cognitive disabilities not often placed on waiting lists for organ transplantation? Could it be institutional and social bias is rampant? The point I am trying to make is Caplan is ignoring important questions that are social and not medical. For example, all people with a cognitive disability should receive adequate health care and support services. This is often not the case. And why do people with a cognitive deficit live in an institutional setting? In my estimation Caplan wants to restrict his observations to medical criteria and ignore all social and cultural variables. I am not suggesting transplant teams ignore medical criteria--I gladly accept these are the primary factors. But we do not live in a medical vacuum. Bias is not left outside the hospital door when medical decisions are made. Thus I find the conclusion to Caplan's essay frustrating in the extreme.
"There are reasons why anyone with an intellectual or physical disability might not be considered a good candidate for a transplant. But those reasons, to be ethical, have to be linked to the chance of making the transplant succeed. Otherwise they are not reasons, they are only biases."
Bias against those with a cognitive disability is a given in my estimation. This population's humanity is not acknowledged. People with a cognitive disability do not share the same freedom, equality, dignity, and justice as "normates" to use Garland-Thomson's awkward word. Some scholars have even argued that people with profound cognitive disabilities are nonhuman. As such they do not share the same basic human rights that are enjoyed by those with the ability to reason. To me, such arguments reveal the inherent value of the social model of disability. The "problem" is not a given physical or cognitive impairment but rather the refusal of society to willingly incorporate that difference. This refusal leads to social oppression that is deeply ingrained and has a long history. I am reminded of this history every time I drive to Vermont and pass the boarded up Hudson Valley Psychiatric Center. I shudder every time I pass this facility and wonder how many lives were lost and destroyed. Here is where I depart from Caplan and other bioethicists. For me bioethics and disability scholarship is personal. It is not an interesting intellectual exercise. It is not a job. It is not career. I want to do nothing less than ameliorate bias. I want to live in a world where disability is an accepted and a normal part of the human condition. I want to live in a world where the parents of Amelia Rivera do not make headlines. This is about much more than one little girl and her parents who encountered gross bias. Her story exposes a dark under belly of ingrained social exclusion for those with a cognitive disability. If you think I am being overly dramatic I suggest you read the comments posted to the article by Caplan or those published in USA Today, Huffington Post and other news media outlets. The bias there is shocking and it is a given kidneys do not go to "retards" thereby reinforcing my belief our culture does not value the existence of people like Rivera and me for that matter.
Bioethicists and disability scholars have radically different views on topics such as growth attenuation, the medical treatment of infants born with disabilities, prenatal testing, life support, and end of life issues to mention a few hotly debated subjects. I hold a pessimistic view of whether bioethicists and disability scholars will ever be able to work together. Distrust runs too deep in spite of the fact bioethicists have made efforts to consider disability as a central issue. Some scholars such as Alicia Quellette in her book Bioethics and Disability contend "disability is now part of the conversation" and no longer a "shadow issue". I think this observation is far too optimistic. I also do not share Quellette's belief that bioethics as a "field is ripe for a change". In my estimation, bioethicists as a group have utterly failed to grasp much less try to overturn the gross injustices people with a disability routinely encounter. Bioethicists pay lip service to what they call the "disability perspective. Such lip service was on display this week when I read and heard comments by Art Caplan about the Amelia Rivera case (According to her parents Amelia Rivera was turned down for a kidney transplant because she has a cognitive disability). Caplan is the Director of the Center for Bioethics at the University of Pennsylvania and seems to be the go to guy when the mainstream press needs a sound bite from a bioethicist. When the Rivera case spread across the internet like wild fire I was disinterested. I was not at all surprised the Rivera family was told their daughter was not a candidate for a kidney transplant because she was "retarded"--not even if the kidney came from a family member. The bias the Rivera family encountered was nothing new to me or parents of children with profound cognitive disabilities. In fact I would characterize the bias against people with a physical or cognitive disability as routine, ordinary even, in the health care system. And this is why Art Caplan gained my attention; in "Serious Issues in Disabled Girl Transplant Case" he wrote just enough to appear unbiased and supportive of people with a disability. For example, Caplan noted "The issue of disability and access to a life-saving transplant merits serious reflection". He continues:
"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."
The phrase "morally things get a little stickier" is deeply problematic. Caplan correctly notes the transplant team needed to consider who would care and manage post surgery medications for a person with a cognitive disability. Transplant teams need to consider the long term survival of a person with a cognitive disability who may present other daunting medical conditions. Transplant teams must consider whether a person with a cognitive disability lives in an institution. All these points are valid. Yet I consider his contention that "each case involving a disabled person has to be looked at individually" misleading. If each case was looked at as Caplan suggests why did most transplant programs refuse to even consider a person with a cognitive disability until the mid 1990s. More to the point why are people with cognitive disabilities not often placed on waiting lists for organ transplantation? Could it be institutional and social bias is rampant? The point I am trying to make is Caplan is ignoring important questions that are social and not medical. For example, all people with a cognitive disability should receive adequate health care and support services. This is often not the case. And why do people with a cognitive deficit live in an institutional setting? In my estimation Caplan wants to restrict his observations to medical criteria and ignore all social and cultural variables. I am not suggesting transplant teams ignore medical criteria--I gladly accept these are the primary factors. But we do not live in a medical vacuum. Bias is not left outside the hospital door when medical decisions are made. Thus I find the conclusion to Caplan's essay frustrating in the extreme.
"There are reasons why anyone with an intellectual or physical disability might not be considered a good candidate for a transplant. But those reasons, to be ethical, have to be linked to the chance of making the transplant succeed. Otherwise they are not reasons, they are only biases."
Bias against those with a cognitive disability is a given in my estimation. This population's humanity is not acknowledged. People with a cognitive disability do not share the same freedom, equality, dignity, and justice as "normates" to use Garland-Thomson's awkward word. Some scholars have even argued that people with profound cognitive disabilities are nonhuman. As such they do not share the same basic human rights that are enjoyed by those with the ability to reason. To me, such arguments reveal the inherent value of the social model of disability. The "problem" is not a given physical or cognitive impairment but rather the refusal of society to willingly incorporate that difference. This refusal leads to social oppression that is deeply ingrained and has a long history. I am reminded of this history every time I drive to Vermont and pass the boarded up Hudson Valley Psychiatric Center. I shudder every time I pass this facility and wonder how many lives were lost and destroyed. Here is where I depart from Caplan and other bioethicists. For me bioethics and disability scholarship is personal. It is not an interesting intellectual exercise. It is not a job. It is not career. I want to do nothing less than ameliorate bias. I want to live in a world where disability is an accepted and a normal part of the human condition. I want to live in a world where the parents of Amelia Rivera do not make headlines. This is about much more than one little girl and her parents who encountered gross bias. Her story exposes a dark under belly of ingrained social exclusion for those with a cognitive disability. If you think I am being overly dramatic I suggest you read the comments posted to the article by Caplan or those published in USA Today, Huffington Post and other news media outlets. The bias there is shocking and it is a given kidneys do not go to "retards" thereby reinforcing my belief our culture does not value the existence of people like Rivera and me for that matter.
Tuesday, January 17, 2012
Organ Transplants and Disability Discrimination
Disability related blogs are abuzz about a blog entry, Brick Walls, written by Chrissy Rivera. In short, the Children's Hospital of Philadelphia refused to provide an organ transplant for a two year old girl. The child in question has Wolf-Hirschorn Syndrome and needs a kidney transplant within six months to a year. Without a transplant she will die. Wolf-Hirschorn syndrome is a rare genetic condition and involves delayed growth, seizures, and cognitive deficits. According to Rivera, the sole reason her daughter was denied a kidney transplant was because she was "retarded". She was not eligible for any kidney--even a kidney donated by a family member. This story has blazed a trail across the internet, particularly within the "children with special needs" needs community. The mainstream press has picked up the story--reports have been on local television news programs in Philadelphia and USA Today ran a story. The hospital is under a siege of complaints. The hospital Facebook page has been flooded with howls of protests. An online petition has been signed by over 16,000 people and the hospital is in full damage control.
None of the above surprises me. I am not at all surprised the hospital denied a child with a cognitive disability a transplant. I would not be surprised if the hospital denied a person with a physical disability, any physical disability, a transplant. I would not be surprised if I was denied a kidney transplant. The fact is I cannot receive a kidney transplant. After urological surgery in 2010 a rider was put on my health insurance policy that established a kidney transplant would not be covered. People without insurance do not get organ transplants. The facts with regard to organ transplantation and disability based discrimination are simple: organs are rationed, it is unavoidable and we are not worthy. People die waiting for a life saving organ. Hospitals do the best they can to be fair. However it is impossible to ignore value judgments when allocating organs. Should a murderer be eligible? What about a person with a long history of addiction? How old is too old to be eligible? Is a certain level of cognitive ability required? The organization in charge of making these sorts decisions is the United Network for Organ Sharing (UNOS). Debate is becoming more heated with regard to exactly who is eligible for an organ as well as the circumstances under which organs are harvested (see Not Dead Yet post of January 3, 2012). Thus Rivera's heart wrenching story is merely the tip of an iceberg--that proverbial iceberg is couched in some misleading jargon and difficult to disentangle verbiage. For example, below is a statement released by the hospital:
"We want you to know that CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status. Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities and impairments."
The above is a wonderful statement. The only problem is it is patently false or at the very least grossly misleading. The hospital statement goes on to maintains that “all determinations of eligibility for transplantation are treated on an individual basis” using a “non-discriminatory approach, after a multidisciplinary assessment and discussion, which is the standard of practice throughout the country.” Again, a wonderful statement. This may be true but it is grossly misleading. One cannot leave bias and prejudice at the entrance door to hospitals nationwide. What ran through my mind when I read the hospital press release was a story I read about in the mid 1990s. Up until 1995 organ transplantation in individuals with mental retardation (MR) was regarded as a contraindication. Here i am parroting medical journal jargon. In layman's terms doctors believed post transplant care was too complex for a person with a cognitive disability to comprehend and their quality of life was less than a person with "normal" cognition. Blatant bias against people with a cognitive disability came to the forefront when Sandra Jensen, a 32 year-old woman with Down Syndrome was initially denied a heart-lung transplant in 1995.Jensen's application for a transplant was denied specifically because of her MR. Negative publicity flowed forth and advocates for people with cognitive disabilities convinced the hospital to reconsider its position. Jensen received a transplant (she died 18 months later from anti-rejection drug complications). I am afraid Children's Hospital of Philadelphia will do the same thing Stanford Medical Center did with the Jensen case--make it go away and bury it. My only hope is that Rivera's emotional post and searing outrage will not be easily forgotten. I know I will not forget the following:
"So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”
No jargon here. This is the unfiltered truth. People like Rivera's daughter have limited access to organ transplants. It is obvious though unspoken that their access is far from equal. Not much has changed since the mid 1990s in my estimation. In 2003 William Bronston, a physician who advocated for Jensen formed a group of scholars and advocates called the National Work Group on Disability and Transplantation. This group conducted a survey among families that cared for a person with a cognitive disability. 80% believed that they were discriminated against regarding access to organ transplants. Powerful and deadly social forces are at work here. A few days ago my friend Stephen Kuusisto described these larger social forces. At Planet of the Blind he wrote:"What is not in doubt is the predatory and heartless social reformation well underway in the United States--a reframing of social Darwinism without apology." Rivera's story is in Kuusisto's estimation "so Dickensian I want to scream". I hope Kuusisto has a great set of lungs for I doubt his screams of protest will be heard.
None of the above surprises me. I am not at all surprised the hospital denied a child with a cognitive disability a transplant. I would not be surprised if the hospital denied a person with a physical disability, any physical disability, a transplant. I would not be surprised if I was denied a kidney transplant. The fact is I cannot receive a kidney transplant. After urological surgery in 2010 a rider was put on my health insurance policy that established a kidney transplant would not be covered. People without insurance do not get organ transplants. The facts with regard to organ transplantation and disability based discrimination are simple: organs are rationed, it is unavoidable and we are not worthy. People die waiting for a life saving organ. Hospitals do the best they can to be fair. However it is impossible to ignore value judgments when allocating organs. Should a murderer be eligible? What about a person with a long history of addiction? How old is too old to be eligible? Is a certain level of cognitive ability required? The organization in charge of making these sorts decisions is the United Network for Organ Sharing (UNOS). Debate is becoming more heated with regard to exactly who is eligible for an organ as well as the circumstances under which organs are harvested (see Not Dead Yet post of January 3, 2012). Thus Rivera's heart wrenching story is merely the tip of an iceberg--that proverbial iceberg is couched in some misleading jargon and difficult to disentangle verbiage. For example, below is a statement released by the hospital:
"We want you to know that CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status. Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities and impairments."
The above is a wonderful statement. The only problem is it is patently false or at the very least grossly misleading. The hospital statement goes on to maintains that “all determinations of eligibility for transplantation are treated on an individual basis” using a “non-discriminatory approach, after a multidisciplinary assessment and discussion, which is the standard of practice throughout the country.” Again, a wonderful statement. This may be true but it is grossly misleading. One cannot leave bias and prejudice at the entrance door to hospitals nationwide. What ran through my mind when I read the hospital press release was a story I read about in the mid 1990s. Up until 1995 organ transplantation in individuals with mental retardation (MR) was regarded as a contraindication. Here i am parroting medical journal jargon. In layman's terms doctors believed post transplant care was too complex for a person with a cognitive disability to comprehend and their quality of life was less than a person with "normal" cognition. Blatant bias against people with a cognitive disability came to the forefront when Sandra Jensen, a 32 year-old woman with Down Syndrome was initially denied a heart-lung transplant in 1995.Jensen's application for a transplant was denied specifically because of her MR. Negative publicity flowed forth and advocates for people with cognitive disabilities convinced the hospital to reconsider its position. Jensen received a transplant (she died 18 months later from anti-rejection drug complications). I am afraid Children's Hospital of Philadelphia will do the same thing Stanford Medical Center did with the Jensen case--make it go away and bury it. My only hope is that Rivera's emotional post and searing outrage will not be easily forgotten. I know I will not forget the following:
"So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”
No jargon here. This is the unfiltered truth. People like Rivera's daughter have limited access to organ transplants. It is obvious though unspoken that their access is far from equal. Not much has changed since the mid 1990s in my estimation. In 2003 William Bronston, a physician who advocated for Jensen formed a group of scholars and advocates called the National Work Group on Disability and Transplantation. This group conducted a survey among families that cared for a person with a cognitive disability. 80% believed that they were discriminated against regarding access to organ transplants. Powerful and deadly social forces are at work here. A few days ago my friend Stephen Kuusisto described these larger social forces. At Planet of the Blind he wrote:"What is not in doubt is the predatory and heartless social reformation well underway in the United States--a reframing of social Darwinism without apology." Rivera's story is in Kuusisto's estimation "so Dickensian I want to scream". I hope Kuusisto has a great set of lungs for I doubt his screams of protest will be heard.
Thursday, January 12, 2012
Happy Anniversary
Tomorrow will mark the the 34th year since I took my last step. Usually I am so busy I fail to acknowledge must less think about this date. This year is different though. I have been in a retrospective mood in recent weeks. I do not miss walking one iota. The thought of walking is so far from my mind it is akin to wishing I could go to Mars. Walking is simply not relevant to my life. My retrospection is more inwardly driven. Concern for my son and his future. Wonderment about just how unpredictable life is. Amazement that I am a middle aged man, a responsible adult. Thinking of the people I know and those who are no longer a part of my life. Were these sort of thoughts not meant for New Year's Eve? Oh well, I guess I continue my life-long pattern of doing things differently.
So I put it out to those that read my blog. What if anything should I do tomorrow to celebrate my 34th year of paralysis. And remember this is indeed a celebration. I celebrate and consider each day a gift.
So I put it out to those that read my blog. What if anything should I do tomorrow to celebrate my 34th year of paralysis. And remember this is indeed a celebration. I celebrate and consider each day a gift.
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