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.
Quick update....
Sunday, January 22, 2012
A quick progress update ahead of what's going to be a really busy week for the project.
The Powering the World exhibition has been signed off and the panels will be printed this week. It will be launched at Friday's workshop. It's hard to judge until I see them full size, but on paper they look great and I hope they promote the collections well.
The pilot employability project has finished, with both students engaging with the business archives material and producing really interesting web-guides. Both gave positive feedback on their experience, and particularly their change of opinion on business archives as 'dry' and 'daunting' to a source they would both happily use again. A full report to come in the next few weeks!
Finally, Friday is the day of the workshop �The Bottom Line: The Value of Business Archives for Research� at We have some excellent speakers on the day, showing the quality, and variety, of research that can come from business records.
� Dr Quentin Outram, Senior Lecturer in Economics, Leeds University Business School
�A Real Victory: The First of its kind since 1926': Employer archives on the Emlyn Strike of 1934'
He is the co-author (with Roy Church) of Strikes and Solidarity: Coalfield Conflict in Britain University Wales Press
� Dr Tehmina Goskar: Research officer on the ESRC-funded Global and Local Worlds of Welsh Copper Project (until Sep 2011)
�Putting Humpty together again: Reconstructing supply chain information from copper business archives'
See here for more information on this project which brought together academics, the heritage sector and local and global communities to tell the story of Welsh copper
� Richard Haines, PHD student at Swansea University
�An Embarrassment of Riches: Approaches to the Quantitative Analysis of British Shipping�
Received an AHRC Collaborative Doctoral Award to work in conjunction with Swansea University National Waterfront Museum Swansea
For more information, or to register, please see here
Disability, Bioethics and Transplantation: Problems Abound
Friday, January 20, 2012
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.
Organ Transplants and Disability Discrimination
Tuesday, January 17, 2012
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.
Happy Anniversary
Thursday, January 12, 2012
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.
Responses to Paralysis
Wednesday, January 11, 2012
I am an avid New York Ranger fan and closely follow the team and NHL in general. My interest dates back to when I was a little boy and the big bad Boston Bruins broke my heart on a regular basis. I truly love hockey. It is a spectacular mix of athletic skill and violence. Hockey players as a group tend to be very kind people, down to earth and giving. It has always amazed me how few hockey players suffer spinal cord injuries. Of course some players have had such an injury. Most recently I have been reading about Jake Jablonski and Jenna Privette, two young hockey players in Minnesota who suffered a spinal cord injury. As often happens, there is an out pouring of support from the hockey community. Based on newspaper accounts, Jablonski will never walk again. The prognosis for Privette is a bit more optimistic.
I have been thinking a lot about newly paralyzed people in the last month. The death of Christina Symanski deeply troubled me. How I keep thinking could a paralyzed person choose to die? Is paralysis really that bad? For me the answer is an emphatic no. This Friday is also a milestone for me. January 13 will be the 34th year since I last took a step. In a retrospective mood, I have grown to feel increasingly disconnected from newly paralyzed people. My experience was radically different from what people go through today after a paralyzing injury. There were no laws to protect my civil rights 34 years ago. Wheelchair access was perceived to be a choice, charity, and obstacles abounded. I was driven largely by fear. I wanted a normal life. Normal to me meant going to college like any other 18 year old man. I was paralyzed but the most important part of my body, my brain, was working perfectly fine. And I did exactly what I set out to do. I went to college, graduate school, got married, had a child, and much later divorced. All very ordinary experiences.
This is what I have been thinking about: why not be ordinary? Why is the ordinary out of the reach of paralyzed people? Why was I able to move on without missing a beat? Many paralyzed people I know have done the same thing. I know researchers, doctors, academics, business men and women, and lawyers all of whom are ordinary, ordinary paralyzed people. This line of thought was prompted by a story on a local Minnesota NPR radio station. Ali Lozoff wrote "Navigating the Life that Follows a Spinal Cord Injury". It would be easy to critique the article as there is too much about overcoming and inspiration. But the bottom line was her admiration for her Uncle Bill. He was paralyzed as a youth and lived 45 years as a semi independent quadriplegic. What does Lozoff remember? Her Uncle was funny, complicated, determined, talented and happy. She recalled:
"For 30 years he sold pieces at art fairs, in galleries and on street corners; my cousins and I grew up working as his assistants, packaging note cards and making change. We saw the varying degrees of pity, fear and discomfort he encountered in other people every day of his extraordinary life."
Lozoff's Uncle Bill learned to paint just like Symanski. I never met Symanski or Lozoff's Uncle Bill but in a way we are all linked. I did not get this connection until I read the following words by Lozoff: "I've been trying to figure out the best way to carry on the inspiration and example of his life. One way, given the news of these recent sports injuries, is to tell Bill's story to more people. Jack Jablonski's prognosis is the same as Bill's was; his doctors say he will never walk again. Even so, the circumstances are different; the medical advances since Bill's injury are innumerable. But the life-long challenges are similar."
I am willing to ignore the reference to inspiration and have instead latched on to the phrase "the life-long challenges are similar". I would maintain those life-long challenges paralyzed people encounter are social and take many forms. Gross lack of social supports are commonplace. Unemployment is rampant. Access to health care difficult or impossible and too often results in institutionalization. Mass transportation is problematic at best. Housing scarce. These are social problems that preclude an ordinary life. For some, they are beaten down by such barriers. This worries me. In spite of 40 plus years of legislative initiatives designed to empower people with a disability newly paralyzed people are set up to fail. Sure we have laws designed to protect our rights but such laws are meaningless without social support. We as a people, American people, do not value laws of inclusion. The presence of a person with a disability still causes a social disruption--it upsets the "primal scene of sociology" as utilized by Erving Goffman. Part of me values my existence as an outsider. I know the norm will always escape me and that I have a "spoiled identity". This has not changed nor will it. Such a position is great for viewing and analyzing much social interaction. But a life spent as an outsider is not what many want--and here is where I understand others who struggle with paralysis and its social consequences. As Kermit the Frog said "its not easy being green". To this classic line I would modify to it may not be easy but it sure as hell is interesting.
I have been thinking a lot about newly paralyzed people in the last month. The death of Christina Symanski deeply troubled me. How I keep thinking could a paralyzed person choose to die? Is paralysis really that bad? For me the answer is an emphatic no. This Friday is also a milestone for me. January 13 will be the 34th year since I last took a step. In a retrospective mood, I have grown to feel increasingly disconnected from newly paralyzed people. My experience was radically different from what people go through today after a paralyzing injury. There were no laws to protect my civil rights 34 years ago. Wheelchair access was perceived to be a choice, charity, and obstacles abounded. I was driven largely by fear. I wanted a normal life. Normal to me meant going to college like any other 18 year old man. I was paralyzed but the most important part of my body, my brain, was working perfectly fine. And I did exactly what I set out to do. I went to college, graduate school, got married, had a child, and much later divorced. All very ordinary experiences.
This is what I have been thinking about: why not be ordinary? Why is the ordinary out of the reach of paralyzed people? Why was I able to move on without missing a beat? Many paralyzed people I know have done the same thing. I know researchers, doctors, academics, business men and women, and lawyers all of whom are ordinary, ordinary paralyzed people. This line of thought was prompted by a story on a local Minnesota NPR radio station. Ali Lozoff wrote "Navigating the Life that Follows a Spinal Cord Injury". It would be easy to critique the article as there is too much about overcoming and inspiration. But the bottom line was her admiration for her Uncle Bill. He was paralyzed as a youth and lived 45 years as a semi independent quadriplegic. What does Lozoff remember? Her Uncle was funny, complicated, determined, talented and happy. She recalled:
"For 30 years he sold pieces at art fairs, in galleries and on street corners; my cousins and I grew up working as his assistants, packaging note cards and making change. We saw the varying degrees of pity, fear and discomfort he encountered in other people every day of his extraordinary life."
Lozoff's Uncle Bill learned to paint just like Symanski. I never met Symanski or Lozoff's Uncle Bill but in a way we are all linked. I did not get this connection until I read the following words by Lozoff: "I've been trying to figure out the best way to carry on the inspiration and example of his life. One way, given the news of these recent sports injuries, is to tell Bill's story to more people. Jack Jablonski's prognosis is the same as Bill's was; his doctors say he will never walk again. Even so, the circumstances are different; the medical advances since Bill's injury are innumerable. But the life-long challenges are similar."
I am willing to ignore the reference to inspiration and have instead latched on to the phrase "the life-long challenges are similar". I would maintain those life-long challenges paralyzed people encounter are social and take many forms. Gross lack of social supports are commonplace. Unemployment is rampant. Access to health care difficult or impossible and too often results in institutionalization. Mass transportation is problematic at best. Housing scarce. These are social problems that preclude an ordinary life. For some, they are beaten down by such barriers. This worries me. In spite of 40 plus years of legislative initiatives designed to empower people with a disability newly paralyzed people are set up to fail. Sure we have laws designed to protect our rights but such laws are meaningless without social support. We as a people, American people, do not value laws of inclusion. The presence of a person with a disability still causes a social disruption--it upsets the "primal scene of sociology" as utilized by Erving Goffman. Part of me values my existence as an outsider. I know the norm will always escape me and that I have a "spoiled identity". This has not changed nor will it. Such a position is great for viewing and analyzing much social interaction. But a life spent as an outsider is not what many want--and here is where I understand others who struggle with paralysis and its social consequences. As Kermit the Frog said "its not easy being green". To this classic line I would modify to it may not be easy but it sure as hell is interesting.
Santorum Victory in Iowa: Shocked, Just shocked
Wednesday, January 4, 2012
In November I took apart a Santorum political commercial. At the time, I did not consider him to be a viable candidate. I thought he had no chance to win the nomination. Wow, was I wrong. Santorum virtually tied the Republican caucus in Iowa last night. I could not believe it. I lay in bed this frigid morning stunned. I tried to comfort myself with the the thought he lost by a narrow margin--as in eight votes. This did not help. But my thoughts were not tied to his victory but rather a video I saw of Santorum speak about the birth of his daughter. Since he was a fringe candidate I did not want to take the time and felt he was not worth picking on. This all changed last night. Santorum's daughter was born with Trisomy 18, a condition he describes as worse than Down Syndrome, a characterzation I will not comment on. Santorum correctly notes Trisomy 18 is usually a fatal condition. Again, I will not comment on why Trisomy 18 is fatal. I will instead urge readers to do their own research and hope they keep in mind an inherent disability bias that exists in our society. So, check out the video below:
I dislike Santorum for a host of reasons. He is staunchly anti gay. His views on abortion are extreme. His fiscal policies punitive. In short, for me he is the personification of all that is wrong with conservatives, the Tea Party, Republicans, and Evangelical politicians. But I failed to realize he has a great act going here. He makes Sarah Palin look like a B level actress. The video is a sure fire tear jerker. How can you not cry and laugh. The man is engaging, he has charisma. A number of articles appeared over the Thanksgiving holiday about Santorum's so called confession. It was startling. He withheld his love from his own child. He did this to protect himself, to be the "rock" for his family. Oh, how manly! And who is to blame? Why doctors of course. They encouraged him to "let go", a nice way of saying his child would be better off dead. Worse yet in Santorum's estimation, imagine if their child had been born in a country with socialized medicine. His daughter would have surely died. And who is the savior, the hero of the story? His wife, the child's mother, who fought for a prescription for oxygen when they took their baby home from the hospital. The heroin of the story, the mother, saves her child time after time. She is the personification of motherhood.
The emotional impact of the video cannot be underestimated. I dismissed it as political theatre and was I ever wrong. This is a classic American fairy tale. It touches a primal core within American cultural beliefs. For a politician this story is a veritable gold mine. Santorum becomes bullet proof. I read a comment Santorum was not happy last night, that he had a "rough night". Why? His daughter was sick. Yes, on the biggest night of his political career he was not celebrating his victory but concerned with his daughters health. Hollywood could not write a better script.
The only problem with the Santorum story is it is patently false. Let me be very clear on this point. I do not doubt Santorum and his wife are loving and dedicated parents. Everything I have read about Santorum indicates he and his wife are wonderful parents who have home schooled their children. I consider the story false because my take on what he and his wife experienced with their daughter is radically different. So, forget the tear jerking emotion and examine what took place. Doctors told parents in the United States to let their child go. They encouraged parents to let their child die. This did not happen in a country with socialized medicine. This happened in America. It happened to powerful parents with I assume excellent health care insurance. This leads me to ask why? Why did doctors encourage parents to let the Santorum's child die? This was an institutional response enacted by highly educated doctors. Again, why? And more to the point what would happen to ordinary parents? Would they have won the fight for oxygen for their child? I doubt it very much. And what about Santorum's social policies? Forget the emotional impact the video makes. Under his budget cuts and opposition to health care reform who will be hurt? Children like his daughter. She would be hurt. People with a disability will be hurt. People with a disability will not get a good education, one they are legally entitled to. Children like his daughter will struggle to access health care. Children like his daughter future is grim. But hey, Santorum got teary eyed. Santorum cares. Santorum is a great father, his wife a heroic mother. He is a rock of stability. My hope is voters can decipher reality from emotion. The reality is grim. The emotion a smoke screen. The man is slick, his message has massive popular appeal. I was grossly wrong before. Santorum is a viable candidate. This thought scares me to death. And no, I do not want to die.
I dislike Santorum for a host of reasons. He is staunchly anti gay. His views on abortion are extreme. His fiscal policies punitive. In short, for me he is the personification of all that is wrong with conservatives, the Tea Party, Republicans, and Evangelical politicians. But I failed to realize he has a great act going here. He makes Sarah Palin look like a B level actress. The video is a sure fire tear jerker. How can you not cry and laugh. The man is engaging, he has charisma. A number of articles appeared over the Thanksgiving holiday about Santorum's so called confession. It was startling. He withheld his love from his own child. He did this to protect himself, to be the "rock" for his family. Oh, how manly! And who is to blame? Why doctors of course. They encouraged him to "let go", a nice way of saying his child would be better off dead. Worse yet in Santorum's estimation, imagine if their child had been born in a country with socialized medicine. His daughter would have surely died. And who is the savior, the hero of the story? His wife, the child's mother, who fought for a prescription for oxygen when they took their baby home from the hospital. The heroin of the story, the mother, saves her child time after time. She is the personification of motherhood.
The emotional impact of the video cannot be underestimated. I dismissed it as political theatre and was I ever wrong. This is a classic American fairy tale. It touches a primal core within American cultural beliefs. For a politician this story is a veritable gold mine. Santorum becomes bullet proof. I read a comment Santorum was not happy last night, that he had a "rough night". Why? His daughter was sick. Yes, on the biggest night of his political career he was not celebrating his victory but concerned with his daughters health. Hollywood could not write a better script.
The only problem with the Santorum story is it is patently false. Let me be very clear on this point. I do not doubt Santorum and his wife are loving and dedicated parents. Everything I have read about Santorum indicates he and his wife are wonderful parents who have home schooled their children. I consider the story false because my take on what he and his wife experienced with their daughter is radically different. So, forget the tear jerking emotion and examine what took place. Doctors told parents in the United States to let their child go. They encouraged parents to let their child die. This did not happen in a country with socialized medicine. This happened in America. It happened to powerful parents with I assume excellent health care insurance. This leads me to ask why? Why did doctors encourage parents to let the Santorum's child die? This was an institutional response enacted by highly educated doctors. Again, why? And more to the point what would happen to ordinary parents? Would they have won the fight for oxygen for their child? I doubt it very much. And what about Santorum's social policies? Forget the emotional impact the video makes. Under his budget cuts and opposition to health care reform who will be hurt? Children like his daughter. She would be hurt. People with a disability will be hurt. People with a disability will not get a good education, one they are legally entitled to. Children like his daughter will struggle to access health care. Children like his daughter future is grim. But hey, Santorum got teary eyed. Santorum cares. Santorum is a great father, his wife a heroic mother. He is a rock of stability. My hope is voters can decipher reality from emotion. The reality is grim. The emotion a smoke screen. The man is slick, his message has massive popular appeal. I was grossly wrong before. Santorum is a viable candidate. This thought scares me to death. And no, I do not want to die.
Exoskeleton: A Cranky New Year
Sunday, January 1, 2012
Anyone who has glanced at this blog knows I do not like the exoskeleton. About once a month I get an email from exoskeleton fans who characterize me as bitter. I don't get this--I am quite happy rather than bitter. I really like my wheelchair and think I have led and will continue to lead a rich and rewarding life. I see no use for the exoskeleton in my life and likely about 95% of those who are paralyzed. I remain troubled by the huge sums of money spent on the development of the exoskeleton to the detriment of mundane and important technology such as wheelchairs. I have often felt like a lone voice of dissent. It is as though I am the cranky sober guy at a wild party who ruins the fun for everyone else. But I am not alone. I just read a post by Mike Ervin at his blog smartasscripple. Ervin is a very funny columnist and I loved his December 20, 2011 post "Mandatory Exoskeletons".
Ervin wrote:
I�m pretty fucking depressed these days. It seems like my nightmare, dystopian vision of the future for cripples is rapidly becoming reality. And there�s nothing I can do to stop it.
"All over the world, evil, mad scientists are working with feverish, sadistic glee developing robotic exoskeletons. Check it out. Google up some exoskeletons and you�ll see what I mean. A lot of these scientists are pursuing this research in the name of using exoskeletons to enable cripples to move their limbs again. They�re making tremendous progress and it�s pretty damn scary. Because soon those super-charged exoskeletons like the one that guy flies around in in the movie �Iron Man� will be an everyday reality. And as soon as that happens, every cripple will be required by the state to have one.
When you look at it from a cold, bureaucratic bean-counter�s perspective, it makes perfect sense. Why should the public trough pay for cripples to have human assistants accompany them all day and help them do stuff when you can make those same cripples wear exoskeletons and suddenly they can move everything they couldn't move before and do stuff for themselves? The more crippled the person, the more of an exoskeleton they�ll need. Like a single amputee would just get a corresponding bionic arm or leg and they�re off to the races. But someone who�s really really crippled, like me or Christopher Reeve, if we�re supposed to do everything for ourselves we�ll have to be assigned a full-body exoskeleton like the �Iron Man� guy�s."
Acerbic. Ervin has a razor sharp wit and I am glad he too has poked fun and railed against the exoskeleton. What a waste of resources. Any facility or person that purchases a exoskeleton is on my shit list. I simply cannot respect anyone that buys into the hype of such a device. Let the popular press wax poetic about the virtues of the exoskeleton and walking but at least spare paralyzed people from such empty rhetoric. I really have too much to do. My life is too good and I am too happy. My wish for 2012 is simple--I hope the exoskeleton falls victim to the long predicted apocalypse.
Ervin wrote:
I�m pretty fucking depressed these days. It seems like my nightmare, dystopian vision of the future for cripples is rapidly becoming reality. And there�s nothing I can do to stop it.
"All over the world, evil, mad scientists are working with feverish, sadistic glee developing robotic exoskeletons. Check it out. Google up some exoskeletons and you�ll see what I mean. A lot of these scientists are pursuing this research in the name of using exoskeletons to enable cripples to move their limbs again. They�re making tremendous progress and it�s pretty damn scary. Because soon those super-charged exoskeletons like the one that guy flies around in in the movie �Iron Man� will be an everyday reality. And as soon as that happens, every cripple will be required by the state to have one.
When you look at it from a cold, bureaucratic bean-counter�s perspective, it makes perfect sense. Why should the public trough pay for cripples to have human assistants accompany them all day and help them do stuff when you can make those same cripples wear exoskeletons and suddenly they can move everything they couldn't move before and do stuff for themselves? The more crippled the person, the more of an exoskeleton they�ll need. Like a single amputee would just get a corresponding bionic arm or leg and they�re off to the races. But someone who�s really really crippled, like me or Christopher Reeve, if we�re supposed to do everything for ourselves we�ll have to be assigned a full-body exoskeleton like the �Iron Man� guy�s."
Acerbic. Ervin has a razor sharp wit and I am glad he too has poked fun and railed against the exoskeleton. What a waste of resources. Any facility or person that purchases a exoskeleton is on my shit list. I simply cannot respect anyone that buys into the hype of such a device. Let the popular press wax poetic about the virtues of the exoskeleton and walking but at least spare paralyzed people from such empty rhetoric. I really have too much to do. My life is too good and I am too happy. My wish for 2012 is simple--I hope the exoskeleton falls victim to the long predicted apocalypse.
Subscribe to:
Posts (Atom)