I have been getting away from giving updates on my wound. The reason for this is simple: I continue to heal. I have been free of the wound vacuum for more than a month and hopefully will never see the damn machine again. I still have wound care come to my house to help change the foam island dressing. I do this myself the days wound care does not come. It is quite awkward to do but I get better each time I do it. I have given up guessing when the wound will be fully healed. It is now very small, smaller than the size of a dime, and superficial. I figure a few more weeks at most and I will be at long last officially healed. What a long arduous process this has been. This has been a road I hoped to never traverse, one I hope to avoid for the rest of my life.
The point of the above is that my posts will and pretty much already have returned to normal programming. I will continue to hammer away at my undivided goal--equal rights for all people with disabilities. That is the one theme that hold each and every post together. It is a quest I will never give up on. It is my fervent hope that the posts I have put up over the last few years will help in some small way counteract what is written in the mainstream media. So, stay tuned for more words from this bad cripple.
Sunday, April 3, 2011
Thursday, March 31, 2011
Assisted Suicide: No Assistance Wanted
I do not want to die. This sentiment hardly makes me unusual. What does make me different is I have a legitimate worry. I worry someone will decide to kill me. I do not think someone will kill me maliciously, for spite, or hate. I worry someone will kill me with kindness in their heart. I am not paranoid. I know more than a few other people with a disability that have the same worry. Like it or not, people with a disability are not valued. Our lives are deemed tragic. Social expectations are limited at best. No one expects us to have a job, be a parent, or live a vibrant life. No, our role is to get well. For me, that means I should spend all my time thinking about walking. I should go from doctor to doctor to make this happen, subject myself to experimental stem cell treatment. If I did this I would be lauded as courageous. I consider efforts for cure to spinal cord injury an abject waste of my time. I can happily leave that quest to medical researchers. Instead, I rail against social prejudice and the stigma that clings to disability 20 years after the ADA supposedly made me equal to my bipedal peers. Of one thing I am sure, in daily life and in particular a hospital setting I am very far from equal.
I have been preoccupied with end of life issues since I read an article by Neil Shapiro in the Monterey Herald entitled “Right to Die Gives Dignity to the Disabled” (3/21/11). What strikes me as remarkable is the universal social support people with disabilities receive if they express a desire to die. Why is help to die given so willingly when social supports that are needed to live a full and equal life with a disability despised. Do not doubt me on this. Think for yourself. Read about draconian budget cuts sweeping the nation that adversely affects people with disabilities. Better yet talk to a parent of a child with a severe disability. They can regale you with horror stories about how they have to fight tooth and nail for the most basic support. Talk to a person with a disability who has no job or health insurance and as a result cannot afford a good wheelchair or cushion to prevent a pressure sore from developing.
Many disability studies scholars have explained why people with a disability are not valued. They argue knowledge is socially situated and has inherent logic to its members. Identities are socially constructed and fit into the aforementioned socially constructed knowledge. Certain bodies, disabled bodies (my body) are excluded from dominant social ideologies. The disabled body is inherently flawed. The person with a disability must be in pain, physical or mental. The person with a disability must be unhappy with his or her flawed body. The person with a disability has thus lost their dignity. The person with a disability has lost control and independence. This, for Americans, is a fate worse than death. So it makes sense to put the poor bastards out of their misery? Ah, no it does not. What the above reasoning utterly fails to consider is why. Why are people with disabilities shut off from routine social interaction? Instead of addressing this vexing question we have people like Neil Shapiro who out of the kindness of his hearts wants to help people with a disability die. He also thinks Dr. Kevorkian was a “quirky Michigan doctor”. Shapiro wrote:
“It seems to me that the right to decide that one has suffered enough, that whatever joy remains in life is outweighed by that suffering and that it is time to die, is one of the most fundamental of human and civil rights. Why should one's neighbors be able to dictate that one should not be able to terminate one's unbearable pain? But unless we follow Oregon and Washington, we may never have this right.
There is a great irony in all of this. Those who are not incapacitated are physically able to commit suicide, and need no assistance. Those who require, but are routinely denied, that assistance are the disabled. We spend billions of dollars making sure that they have the same right as the rest of us to shop, visit the beach and the like, but we deny them the right to die with dignity. Go figure.”
Where do I begin? If it were up to my neighbors as Shapiro puts it, I would have been denied an education. I would not be able to get on a bus or plane. I would not have a job or be father. We people with a disability had to fight for these fundamental rights. Even though we people with a disability are supposedly equal I have never felt that way—ever. The idea of equality for people with a disability is illusive at best. As for the billions of dollars spent on access, which Shapiro seems to resent, has saved countless lives, mine included. But just because we spend money on access and inclusion does not mean we value the people who are supposedly equal and included. When it comes to disability rights, as a society we merely pay lip service to these inherent civil rights most take for granted. We do not in reality accept the presence of people with a disability. If we did I would not be forced to enter the back of so many buildings or have to call ahead to ask about access on a regular basis. Simply put, the disabled body remains unwanted and is perceived as defective. Worse yet, the disabled body is costly. Hospitals remain grossly inaccessible. Efforts to be inclusive are often ignored or belittled. The message society sends is not subtle. There is a word that comes to mind—oppression. Add in an illness, social isolation, dependence upon others and the logical leap to thinking my life is not worth living is dangerously short. Thus it is ever so easy to write one wants to control the way we die and the circumstances surrounding death. This desire is understandable but in my estimation dangerous for people with a disability. We need to take a much closer examination of the pros and cons to assisted suicide. When we do sentiments such as those expressed by Shapiro will be deemed not only dangerous but simply wrong.
I have been preoccupied with end of life issues since I read an article by Neil Shapiro in the Monterey Herald entitled “Right to Die Gives Dignity to the Disabled” (3/21/11). What strikes me as remarkable is the universal social support people with disabilities receive if they express a desire to die. Why is help to die given so willingly when social supports that are needed to live a full and equal life with a disability despised. Do not doubt me on this. Think for yourself. Read about draconian budget cuts sweeping the nation that adversely affects people with disabilities. Better yet talk to a parent of a child with a severe disability. They can regale you with horror stories about how they have to fight tooth and nail for the most basic support. Talk to a person with a disability who has no job or health insurance and as a result cannot afford a good wheelchair or cushion to prevent a pressure sore from developing.
Many disability studies scholars have explained why people with a disability are not valued. They argue knowledge is socially situated and has inherent logic to its members. Identities are socially constructed and fit into the aforementioned socially constructed knowledge. Certain bodies, disabled bodies (my body) are excluded from dominant social ideologies. The disabled body is inherently flawed. The person with a disability must be in pain, physical or mental. The person with a disability must be unhappy with his or her flawed body. The person with a disability has thus lost their dignity. The person with a disability has lost control and independence. This, for Americans, is a fate worse than death. So it makes sense to put the poor bastards out of their misery? Ah, no it does not. What the above reasoning utterly fails to consider is why. Why are people with disabilities shut off from routine social interaction? Instead of addressing this vexing question we have people like Neil Shapiro who out of the kindness of his hearts wants to help people with a disability die. He also thinks Dr. Kevorkian was a “quirky Michigan doctor”. Shapiro wrote:
“It seems to me that the right to decide that one has suffered enough, that whatever joy remains in life is outweighed by that suffering and that it is time to die, is one of the most fundamental of human and civil rights. Why should one's neighbors be able to dictate that one should not be able to terminate one's unbearable pain? But unless we follow Oregon and Washington, we may never have this right.
There is a great irony in all of this. Those who are not incapacitated are physically able to commit suicide, and need no assistance. Those who require, but are routinely denied, that assistance are the disabled. We spend billions of dollars making sure that they have the same right as the rest of us to shop, visit the beach and the like, but we deny them the right to die with dignity. Go figure.”
Where do I begin? If it were up to my neighbors as Shapiro puts it, I would have been denied an education. I would not be able to get on a bus or plane. I would not have a job or be father. We people with a disability had to fight for these fundamental rights. Even though we people with a disability are supposedly equal I have never felt that way—ever. The idea of equality for people with a disability is illusive at best. As for the billions of dollars spent on access, which Shapiro seems to resent, has saved countless lives, mine included. But just because we spend money on access and inclusion does not mean we value the people who are supposedly equal and included. When it comes to disability rights, as a society we merely pay lip service to these inherent civil rights most take for granted. We do not in reality accept the presence of people with a disability. If we did I would not be forced to enter the back of so many buildings or have to call ahead to ask about access on a regular basis. Simply put, the disabled body remains unwanted and is perceived as defective. Worse yet, the disabled body is costly. Hospitals remain grossly inaccessible. Efforts to be inclusive are often ignored or belittled. The message society sends is not subtle. There is a word that comes to mind—oppression. Add in an illness, social isolation, dependence upon others and the logical leap to thinking my life is not worth living is dangerously short. Thus it is ever so easy to write one wants to control the way we die and the circumstances surrounding death. This desire is understandable but in my estimation dangerous for people with a disability. We need to take a much closer examination of the pros and cons to assisted suicide. When we do sentiments such as those expressed by Shapiro will be deemed not only dangerous but simply wrong.
Saturday, March 26, 2011
Parenting and Disability: The Final Frontier?
Last year I delivered a paper at Union College at a conference entitled Disability and Ethics through the Life Cycle: Cases Controversies & Finding Common Ground. My paper was about being a parent with a disability. I dragged my son to this conference. I did this for two reasons. First, he was about to graduate from high-school and would be heading off to college in the Fall. I wanted him to see how scholars interacted at a conference. Second, I wanted him to see me in action about a subject, disability rights, that I am passionate about. We had a good time though he was understandably bored at times. Fast forward to last week. I completed a revised and expanded version of my paper for publication. I spoke to my son about my paper, our experience, and how slowly things grind along in academic publishing. He expressed a modicum of interest as he considered the issue already resolved. The paper was delivered, revised copy submitted, and it was time to move on. The sub text was, come on, Dad, this is boring when he suddenly said “Dad, there is only one thing that bothers me about you being disabled”. Oh no, I thought! Where have I gone wrong and how badly have I screwed him up. I said go ahead and tell me. He replied, “Dad, every chair and couch in our house is uncomfortable and you don’t give a shit.” I replied “Guilty as charged!”
I was tremendously relieved by my son’s comment. In the back of my mind I have always had one worry: would my disability have a negative impact on my son? I think his sole complaint, a valid one I may add, is an indication I did many things right. In short I am proud of myself and my parenting skills. Aside from my pride in the way my son has grown and matured, I look back and know it was not easy. I know only one other paralyzed parent. She is much younger than I am with a kinder garden aged daughter. Based on our conversations, she is not encountering many of the problems I had when my son was a little boy. This is heartening to me. But some things have not changed. First, ever present amazement that a paralyzed person can be a parent. Second, explicit and grossly inappropriate questioning by health care providers that assumes a parent with a disability is not competent. Third, social exclusion of children that extends disability based prejudice. Fourth, exclusionary practices in secondary schools and private organizations that inhibit the ability of a parent with a disability to be actively involved in their child’s life.
The four variables above have been foremost on my mind because of a recent court case. Here I refer to Abbie Dorn who gave birth to triplets in 2006. Complications during the births led to severe blood loss and Dorn’s brain being deprived of oxygen. The result was severe brain damage. There is no agreement on the degree to which Abbie Dorn is aware or able to communicate. A year after the triplets births Dorn’s husband divorced her and moved with the children from South Carolina to Los Angeles, California. The case to me is about two things: first, a bitter fight between the father and Abbie Dorn’s parents. Second, the rights of all parents with what is perceived to be a profound disability. The mainstream media has jumped all over this story. Stories have appeared on ABC national news, AP, New York Times, LA Times and many other news outlets. All focus on the classic tragic nature of the case. Abbie Dorn’s parents maintain their daughter has the right to see her children on a regular basis. The father, in contrast, thinks his children will be emotionally traumatized by seeing their severely disabled mother. The case went to court where after a two week hearing the judge ruled the mother had temporary visitation rights. She will be allowed to see her children three hours a day for five straight days each year in her parents home with the father’s supervision. The mother is also allowed a 30-minute monthly videoconference with her children.
The attorneys for both mother and father are thrilled. Abbie Dorn’s lawyer said the ruling was astounding and a precedent setting victory for all disabled parents. The father’s lawyer was thrilled because the visits will be minimal and supervised. I see no victors in this case. I see nothing that can be construed as a victory for all parents with a disability. Of one thing I am sure: there is a deep division bordering on hatred between the father and Abbie Dorn’s mother Susan Cohen. If there are any victims in the case it is the children who are caught in the cross fire between adults that cannot put aside their differences and put the children’s best interests ahead of their own. There is however a subtext to the discussion of the Dorn case. This subtext is never articulated because there is no doubt Dorn cannot physically care for her children. This is not in dispute. The more general subtext is far more complex: are people with a disability capable parents? The social assumption is no, people with a disability are unfit parents. I know this is the case because I was repeatedly discriminated against as a parent with a disability. My fitness and ability as a parent was always questioned. People were not subtle: health care professionals I met in the emergency room where I took my son when he needed stitches questioned whether I was my son’s legal guardian and asked if I had documents to prove it. I doubt any father walking in the door of an emergency room would be asked the same question.
For years I would tease my friends that the bathroom represented the final frontier in terms of disability rights. Sure I could get in the door but precious few bathrooms were ever accessible. Over time I have had to stop using this line—too many bathrooms are now accessible. I suspect that final frontier may now be the right to be an ordinary parent. By ordinary, I mean “normal”. Normal here meaning physical access and social acceptance at schools and all other organizations associated with youth development. Normalcy is something I never experienced raising my son. Does this sound like sour grapes? In part yes. But my son learned some hard lessons about discrimination other kids read about in books. The discrimination I faced and by extension what he experienced as well made him a more understanding person. He understands discrimination in a visceral way. He directly relates to civil rights movements of all oppressed groups. I wish he did not have this first hand knowledge but I look for the positive elements. And his complaint about my furniture is a sure sign he was in no way negatively impacted. Kids I have learned are amazingly adaptable. No kid has ever discriminated against me. Such bias is learned behavior. They learn how to be afraid or discriminate from their parents. I see this lesson being taught all the time. For instance when I go to the grocery store parents inevitably grab their kids hand and state, “watch out for that man in the wheelchair”. The message sent to the child is clear: people with a disability are dangerous, they have a tainted social identity. Now this is something I would like to see discussed. Rather than the tragic elements associated with disability. For I see no tragedy in disability just a group of diverse humans.
I was tremendously relieved by my son’s comment. In the back of my mind I have always had one worry: would my disability have a negative impact on my son? I think his sole complaint, a valid one I may add, is an indication I did many things right. In short I am proud of myself and my parenting skills. Aside from my pride in the way my son has grown and matured, I look back and know it was not easy. I know only one other paralyzed parent. She is much younger than I am with a kinder garden aged daughter. Based on our conversations, she is not encountering many of the problems I had when my son was a little boy. This is heartening to me. But some things have not changed. First, ever present amazement that a paralyzed person can be a parent. Second, explicit and grossly inappropriate questioning by health care providers that assumes a parent with a disability is not competent. Third, social exclusion of children that extends disability based prejudice. Fourth, exclusionary practices in secondary schools and private organizations that inhibit the ability of a parent with a disability to be actively involved in their child’s life.
The four variables above have been foremost on my mind because of a recent court case. Here I refer to Abbie Dorn who gave birth to triplets in 2006. Complications during the births led to severe blood loss and Dorn’s brain being deprived of oxygen. The result was severe brain damage. There is no agreement on the degree to which Abbie Dorn is aware or able to communicate. A year after the triplets births Dorn’s husband divorced her and moved with the children from South Carolina to Los Angeles, California. The case to me is about two things: first, a bitter fight between the father and Abbie Dorn’s parents. Second, the rights of all parents with what is perceived to be a profound disability. The mainstream media has jumped all over this story. Stories have appeared on ABC national news, AP, New York Times, LA Times and many other news outlets. All focus on the classic tragic nature of the case. Abbie Dorn’s parents maintain their daughter has the right to see her children on a regular basis. The father, in contrast, thinks his children will be emotionally traumatized by seeing their severely disabled mother. The case went to court where after a two week hearing the judge ruled the mother had temporary visitation rights. She will be allowed to see her children three hours a day for five straight days each year in her parents home with the father’s supervision. The mother is also allowed a 30-minute monthly videoconference with her children.
The attorneys for both mother and father are thrilled. Abbie Dorn’s lawyer said the ruling was astounding and a precedent setting victory for all disabled parents. The father’s lawyer was thrilled because the visits will be minimal and supervised. I see no victors in this case. I see nothing that can be construed as a victory for all parents with a disability. Of one thing I am sure: there is a deep division bordering on hatred between the father and Abbie Dorn’s mother Susan Cohen. If there are any victims in the case it is the children who are caught in the cross fire between adults that cannot put aside their differences and put the children’s best interests ahead of their own. There is however a subtext to the discussion of the Dorn case. This subtext is never articulated because there is no doubt Dorn cannot physically care for her children. This is not in dispute. The more general subtext is far more complex: are people with a disability capable parents? The social assumption is no, people with a disability are unfit parents. I know this is the case because I was repeatedly discriminated against as a parent with a disability. My fitness and ability as a parent was always questioned. People were not subtle: health care professionals I met in the emergency room where I took my son when he needed stitches questioned whether I was my son’s legal guardian and asked if I had documents to prove it. I doubt any father walking in the door of an emergency room would be asked the same question.
For years I would tease my friends that the bathroom represented the final frontier in terms of disability rights. Sure I could get in the door but precious few bathrooms were ever accessible. Over time I have had to stop using this line—too many bathrooms are now accessible. I suspect that final frontier may now be the right to be an ordinary parent. By ordinary, I mean “normal”. Normal here meaning physical access and social acceptance at schools and all other organizations associated with youth development. Normalcy is something I never experienced raising my son. Does this sound like sour grapes? In part yes. But my son learned some hard lessons about discrimination other kids read about in books. The discrimination I faced and by extension what he experienced as well made him a more understanding person. He understands discrimination in a visceral way. He directly relates to civil rights movements of all oppressed groups. I wish he did not have this first hand knowledge but I look for the positive elements. And his complaint about my furniture is a sure sign he was in no way negatively impacted. Kids I have learned are amazingly adaptable. No kid has ever discriminated against me. Such bias is learned behavior. They learn how to be afraid or discriminate from their parents. I see this lesson being taught all the time. For instance when I go to the grocery store parents inevitably grab their kids hand and state, “watch out for that man in the wheelchair”. The message sent to the child is clear: people with a disability are dangerous, they have a tainted social identity. Now this is something I would like to see discussed. Rather than the tragic elements associated with disability. For I see no tragedy in disability just a group of diverse humans.
Tuesday, March 22, 2011
Sports Imagery: A Damaging Article
I follow two sports closely--hockey and baseball. I love hockey and have a nostalgic interest in baseball. For me, money has ruined baseball. The players make so much money I find it offensive. I also object to the cost of attending a baseball game. Last year I went to Citifield where the NY Mets play--it cost me $200 to walk through the gate. I did not have great seats, just good seats. Sure I had fun but come on. $200 to see a ball game.
Baseball has history and a connection to American culture that is unique. To understand baseball one must understand Americans. The sport reflects our culture. Given this I find all sorts of meaning in baseball writing. I thus read far more about baseball than I ever watch. Yesterday I was reading about a San Diego player I had never heard of, David Newhan. Few people have heard of him because he is a journeyman, one of the many faceless ball players that populate the game. So why am I writing about this man? There was an article in Yahoo Sports The Post Game--"Old Ball Player, New Soul". Apparently Newhan broke his neck in a surfing accident. He was not paralyzed but came very close to being a high level quad. This is a good hook for any article but especially about an unknown baseball player. What shocked me however was the introduction to the article. It was gripping in all the wrong ways. Judge for yourself. Here is the opening:
"It was a simple act. David Newhan held open a restaurant door for a person in a wheelchair. And yet he was overcome by emotion. Gratitude gave way to longing, longing gave way to resolve, resolve circled back to gratitude, and then he wanted nothing more than to find the nearest ballfield, crush a fastball and dash around the bases.
As the wheelchair rolled past, Newhan silently thanked God for his own miraculous luck."
Let me see: I can open my own door thank you very much. I am also a human being. I am not "the wheelchair" that rolled past. How dehumanizing. Here is the blunt message: using a wheelchair is horrible, a tragedy. You do not see a human using a wheelchair you only see the wheelchair, the symbol of all that can go wrong. What are we expected to feel? Why pity of course. Pity the poor bastard that is confined to a wheelchair. This sort of dehumanization makes me furious. How can I ever expect to be treated equally when such destructive sentiments are expressed. Here is what I thought could have been written instead. The player in question takes an interest in disability rights and advocates for people who were not so lucky to avoid a paralyzing injury. This man in his spare time and from his privileged position helps people with disabilities attend or participate in adaptive baseball. Now that article would be worth reading and send a good message. But we rarely if ever see such an article. Charity sells papers. Tugging at people's heart strings gets people to read. Who wants to write about civil rights of people with disabilities. No major newspaper I ever read does this. This void can be overcome but we need people with disabilities to be writers, editors, or employed in some way throughout each section of American society. Without this I do not see an end to the dehumanized status of people with a disability in American society. Not a happy sentiment for sure but accurate.
Baseball has history and a connection to American culture that is unique. To understand baseball one must understand Americans. The sport reflects our culture. Given this I find all sorts of meaning in baseball writing. I thus read far more about baseball than I ever watch. Yesterday I was reading about a San Diego player I had never heard of, David Newhan. Few people have heard of him because he is a journeyman, one of the many faceless ball players that populate the game. So why am I writing about this man? There was an article in Yahoo Sports The Post Game--"Old Ball Player, New Soul". Apparently Newhan broke his neck in a surfing accident. He was not paralyzed but came very close to being a high level quad. This is a good hook for any article but especially about an unknown baseball player. What shocked me however was the introduction to the article. It was gripping in all the wrong ways. Judge for yourself. Here is the opening:
"It was a simple act. David Newhan held open a restaurant door for a person in a wheelchair. And yet he was overcome by emotion. Gratitude gave way to longing, longing gave way to resolve, resolve circled back to gratitude, and then he wanted nothing more than to find the nearest ballfield, crush a fastball and dash around the bases.
As the wheelchair rolled past, Newhan silently thanked God for his own miraculous luck."
Let me see: I can open my own door thank you very much. I am also a human being. I am not "the wheelchair" that rolled past. How dehumanizing. Here is the blunt message: using a wheelchair is horrible, a tragedy. You do not see a human using a wheelchair you only see the wheelchair, the symbol of all that can go wrong. What are we expected to feel? Why pity of course. Pity the poor bastard that is confined to a wheelchair. This sort of dehumanization makes me furious. How can I ever expect to be treated equally when such destructive sentiments are expressed. Here is what I thought could have been written instead. The player in question takes an interest in disability rights and advocates for people who were not so lucky to avoid a paralyzing injury. This man in his spare time and from his privileged position helps people with disabilities attend or participate in adaptive baseball. Now that article would be worth reading and send a good message. But we rarely if ever see such an article. Charity sells papers. Tugging at people's heart strings gets people to read. Who wants to write about civil rights of people with disabilities. No major newspaper I ever read does this. This void can be overcome but we need people with disabilities to be writers, editors, or employed in some way throughout each section of American society. Without this I do not see an end to the dehumanized status of people with a disability in American society. Not a happy sentiment for sure but accurate.
Monday, March 21, 2011
Wheelchair Industry: Quality Absent
I opted out of dealing with wheelchair companies 25 years ago. This was an easy decision to make. Manual wheelchairs as most readers are likely to know are costly--easily exceeding $3,000. What does one get for this money? Not much. I think the vast majority of wheelchairs manufactured today are poorly designed and contain inferior parts, especially things you do not see like wheel bearings. No mass produced wheelchair can withstand the rigors of every day use. Worse yet, the services wheelchair companies provide is laughable. Durable medical equipment vendors provide dismal service at best. Do not believe a word RESNA, Rehabilitative Engineering and Assistive Technology Society of America, states about so called seating specialists. There is a shocking lack of competent people who can help consumers pick out an appropriate wheelchair. To be fair, I would include specialists in rehabilitation such as occupational and physical therapists among those that do not possess adequate knowledge. Getting the right wheelchair is extremely difficult. Mistakes are costly and here I am not just referring to the financial implications. An inappropriate wheelchair can result in a myriad of health related problems. Specialists can be found--most likely at larger rehab centers but I have never found one myself. I will acknowledge some people are well versed in wheelchair technology and have the experience of working with an array of people that need a wheelchair. Sadly, most people who have a spinal cord injury do not have access to these professionals. Adding to the problem is the fact the sort of comprehensive long-term rehab I experienced in the late 1970s is a thing of the past. Sure wheelchair technology and medical care have undergone a revolution since I was in rehab but there are disturbing aspects to the wheelchair industry and modern day rehab. Frankly, most people leaving rehab centers today are grossly unprepared to care for their bodies and the social response to their newly disabled bodies.
These thoughts have been coursing through my brain after reading a wonderful article in Sports N Spokes: "Chair Shake-Up" by Rory A Cooper and Rosemarie Cooper. This is a highly unusual article for the magazine to publish. It is filled with insightful observations and contains a social critique. Do not misunderstand my comment as a cheap shot at Sports N Spokes—it remains the best magazine published about adaptive sports. What separated this article from others is the critique of the wheelchair industry. This critique takes place at a critical juncture in time: the demise of high-end wheelchairs. This is an alarming phenomenon even if it does not directly affect me.
In 2010 Invacare and Sunrise Medical, the biggest manufacturers in the business, each stopped producing most of their titanium wheelchairs. They now make a plethora of crappy, i.e. cheap, wheelchairs that can be bought at a discount on line at sites such as SpinLife.com. The dearth of high-end wheelchairs however is symbolic of a larger problem--people who use a wheelchair are simply not valued. By high-end wheelchair I am referring to a wheelchair that is lightweight and tough--one designed to last a decade or more under rigorous everyday use. The rigorous use I am thinking involves extremes of weather and terrain as well the ability to absorb the abuse dished out by airlines and the constant assembly and disassembly required to get in and out of the car. Such a wheelchair has high quality wheels, rims, hubs, and a top-notch paint job (powder coating). Most mass produced wheelchairs will crumble under such use.
How do I test a wheelchair? I take the frame and throw it out a third or fourth story window. If the frame survives it is good to go. I sincerely doubt any wheelchair made by the mega conglomerate Sunrise Medical can withstand my quality test. This is a huge problem. What I wonder does a young male or female 20 years old with a spinal cord injury do? We guys, and yes gals, who use wheelchairs our entire life depend upon our wheelchairs. When they stop we stop. By extension, this has me wondering how do newly paralyzed people learn to cope with a spinal cord injury? When I was injured I learned far more from my paralyzed peers than I ever did from the doctors, nurses, and therapists charged with my care and supposed rehabilitation. Hence when I went to college fresh out of rehab the best education I got in terms of how to cope with the real world came from my peers.
Paralyzed people today do not get much time in rehabilitation. When I was paralyzed rehab stints of 6-9 months were common. Today, if you are lucky you get three weeks. No one in the olden days was sent home until they had their own wheelchair. When that wheelchair arrived it was a glorious day! Today, people are routinely sent home with a loaner wheelchair, a total piece of junk. They struggle as a result. The vast majority end up back in the hospital. Is this progress? Well no. This is done at the behest of insurance companies and affects not just people with spinal cord injury but a host of people foremost among them the elderly. I can only conclude our existence is not deemed important. You get a few weeks of rehab and if you do not progress it is off to the nursing home. Indeed, the average age for people admitted to nursing homes is now dropping. And who ends up there? People with spinal cord injuries. Do they get proper rehab? Not a chance. They are warehoused and unlikely to ever emerge from the institution they are sent to.
I mourn for my newly crippled peers. They are not given a fighting chance to succeed. In fact, they are set up to fail. How can a newly paralyzed person succeed with a crappy loaner wheelchair and three weeks of rehab? How can they learn how to manage their bodies without talking to those that learned to adapt long ago? The answer is they cannot. I learned how to manage my bladder and bowels by talking to other paralyzed guys. I did not learn one practical thing in the hospital. What I found in the hospital and subsequently in college was camaraderie. I learned much from peers and we were part of the pre ADA generation that had no civil rights and in its absence railed against prejudice. Not all of us succeeded but we all had a fair chance. That is all I want for paralyzed people today—a chance, a legitimate chance.
The only way paralyzed people can function is with top-notch wheelchairs. I was very lucky in that I was paralyzed at a time when wheelchair innovation was actually taking place. The monopoly that Everest & Jennings enjoyed for decades was broken in the late 1970s. For the first time in history paralyzed people were given a real choice when it came to wheelchairs. From this void emerged rigid frame wheelchairs that dominate the market to this day. What I am waiting and hoping for is another such revolution in choices. I do not see that happening though. Instead the wheelchair market is taking a giant step backward—pun intended. Wheelchairs are not designed for rigorous use but to the dictates of insurance carriers. Those insurance carriers do not care one iota about the quality of life of people that use wheelchairs. I care and am very sad. I figured a way around the practical problems of inferior designs and lousy service. My solution though is a solution for one—me. This bothers me for I worry. How do my paralyzed peers can function when restricted by insurance carriers and a lack of top quality choice? This is an issue that must be addressed at the highest levels of industry and government. We paralyzed people need access to not only quality wheelchairs but also technological innovations. Without it we are doomed to fail. I for one do not accept this reality.
These thoughts have been coursing through my brain after reading a wonderful article in Sports N Spokes: "Chair Shake-Up" by Rory A Cooper and Rosemarie Cooper. This is a highly unusual article for the magazine to publish. It is filled with insightful observations and contains a social critique. Do not misunderstand my comment as a cheap shot at Sports N Spokes—it remains the best magazine published about adaptive sports. What separated this article from others is the critique of the wheelchair industry. This critique takes place at a critical juncture in time: the demise of high-end wheelchairs. This is an alarming phenomenon even if it does not directly affect me.
In 2010 Invacare and Sunrise Medical, the biggest manufacturers in the business, each stopped producing most of their titanium wheelchairs. They now make a plethora of crappy, i.e. cheap, wheelchairs that can be bought at a discount on line at sites such as SpinLife.com. The dearth of high-end wheelchairs however is symbolic of a larger problem--people who use a wheelchair are simply not valued. By high-end wheelchair I am referring to a wheelchair that is lightweight and tough--one designed to last a decade or more under rigorous everyday use. The rigorous use I am thinking involves extremes of weather and terrain as well the ability to absorb the abuse dished out by airlines and the constant assembly and disassembly required to get in and out of the car. Such a wheelchair has high quality wheels, rims, hubs, and a top-notch paint job (powder coating). Most mass produced wheelchairs will crumble under such use.
How do I test a wheelchair? I take the frame and throw it out a third or fourth story window. If the frame survives it is good to go. I sincerely doubt any wheelchair made by the mega conglomerate Sunrise Medical can withstand my quality test. This is a huge problem. What I wonder does a young male or female 20 years old with a spinal cord injury do? We guys, and yes gals, who use wheelchairs our entire life depend upon our wheelchairs. When they stop we stop. By extension, this has me wondering how do newly paralyzed people learn to cope with a spinal cord injury? When I was injured I learned far more from my paralyzed peers than I ever did from the doctors, nurses, and therapists charged with my care and supposed rehabilitation. Hence when I went to college fresh out of rehab the best education I got in terms of how to cope with the real world came from my peers.
Paralyzed people today do not get much time in rehabilitation. When I was paralyzed rehab stints of 6-9 months were common. Today, if you are lucky you get three weeks. No one in the olden days was sent home until they had their own wheelchair. When that wheelchair arrived it was a glorious day! Today, people are routinely sent home with a loaner wheelchair, a total piece of junk. They struggle as a result. The vast majority end up back in the hospital. Is this progress? Well no. This is done at the behest of insurance companies and affects not just people with spinal cord injury but a host of people foremost among them the elderly. I can only conclude our existence is not deemed important. You get a few weeks of rehab and if you do not progress it is off to the nursing home. Indeed, the average age for people admitted to nursing homes is now dropping. And who ends up there? People with spinal cord injuries. Do they get proper rehab? Not a chance. They are warehoused and unlikely to ever emerge from the institution they are sent to.
I mourn for my newly crippled peers. They are not given a fighting chance to succeed. In fact, they are set up to fail. How can a newly paralyzed person succeed with a crappy loaner wheelchair and three weeks of rehab? How can they learn how to manage their bodies without talking to those that learned to adapt long ago? The answer is they cannot. I learned how to manage my bladder and bowels by talking to other paralyzed guys. I did not learn one practical thing in the hospital. What I found in the hospital and subsequently in college was camaraderie. I learned much from peers and we were part of the pre ADA generation that had no civil rights and in its absence railed against prejudice. Not all of us succeeded but we all had a fair chance. That is all I want for paralyzed people today—a chance, a legitimate chance.
The only way paralyzed people can function is with top-notch wheelchairs. I was very lucky in that I was paralyzed at a time when wheelchair innovation was actually taking place. The monopoly that Everest & Jennings enjoyed for decades was broken in the late 1970s. For the first time in history paralyzed people were given a real choice when it came to wheelchairs. From this void emerged rigid frame wheelchairs that dominate the market to this day. What I am waiting and hoping for is another such revolution in choices. I do not see that happening though. Instead the wheelchair market is taking a giant step backward—pun intended. Wheelchairs are not designed for rigorous use but to the dictates of insurance carriers. Those insurance carriers do not care one iota about the quality of life of people that use wheelchairs. I care and am very sad. I figured a way around the practical problems of inferior designs and lousy service. My solution though is a solution for one—me. This bothers me for I worry. How do my paralyzed peers can function when restricted by insurance carriers and a lack of top quality choice? This is an issue that must be addressed at the highest levels of industry and government. We paralyzed people need access to not only quality wheelchairs but also technological innovations. Without it we are doomed to fail. I for one do not accept this reality.
Sunday, March 13, 2011
NYT Grim Reading about the Margins of Citizenship
On March 12 the New York Times published a long article that reminded why the paper is read nationwide. Once in a while the NY Times publishes outstanding articles. Yesterday had one of those outstanding examples of first rate journalism. Here I refer to a long article by Danny Hakin, "At State-Run Homes, Abuse and Impunity". No new ground was broken in the article but it was shocking and gripping reading. A New York Time investigation over the past year revealed what many do not want to know much less acknowledge: there is wide spread abuse at group homes run by the State of New York. What sort of abuse? Residents of groups homes have been raped, beaten, taunted, and physically abused. The abusers are rarely if ever convicted of the abuse. State records show that of the 13,000 allegations of abuse in 2009 at state operated group homes fewer than 5% were ever referred to law enforcement. The people being abused are the most vulnerable--men and women with Down Syndrome, Autism, and cerebral palsy. Not much has changed since 1972 when Gerlado Rivera made a name for himself by filming the horrific conditions at Willowbrook Institution. The images were searing. A nationwide scandal resulted and the forced institutionalization of people with a host of disabilities slowly came to an end. In its place of large institutions that warehoused hundreds of people we now have a complex and diverse distributions of small group homes. To me, these are nothing more and nothing less than mini institutions. I am not convinced such group homes are better than the closed institutions that dot the rural landscape of New York. The abuse of large numbers of individuals housed in institutions has ended. In its place small scale and widely spread abuse exists.
I urge readers to look at the NY TImes article. It is grim reading. It should make one angry--deeply angry that those least able to protect themselves are being abused. The abuses are nothing short of horrific. It makes one question humanity. It also made me upset we as Americans have never really had a national dialogue about how to care for people with profound cognitive and physical deficits. If the article in question posses more than a grain of truth we as a society are failing--a failure that dates back a century or more. When I read the story I was moved to tears. How can people abuse others and live with themselves. It is nothing short of evil. But evil lurks in the hearts of many. To counteract such evil we need to openly discuss how we should care for people who cannot care for themselves. I would argue our society has the moral responsibility to do this. I have little faith the courts or politicians can do anything to ameliorate the situation unless a great number of citizens all rise in protest. I do not see this happening either. Why am I so pessimistic? I have read too much about ugly laws, institutionalization, legal abuses, and cases such as Buck v Bell. When I read the story my first thought was that in a horrible way the article highlights much of what Allison C. Carey wrote in her insightful and important book On the Margins of Citizenship. People with cognitive disabilities have historically been marginalized and excluded. Segregation remains the norm for children and adults with profound cognitive and physical impairment. Sure we have group homes in communities but that does not mean the residents are welcome. I live near two group homes and I have seen these people escorted to the local super market in a van. Sadly but hardly a shock to me, the supermarket empties out in world record time when group home residents appear. There is no effort to hide the bias or distinct and palatable level of discomfort. This is an indictment on us not the residents. These people inalienable civil rights are violated on a regular basis. So I reiterate, not much has changed since 1972. But I would go farther, not much has changed since 1927and the notorious Buck v Bell decision written by none other than the widely praised jurist Oliver Wendell Holmes. The denial of Carrie Buck's rights are a low point int he history of jurisprudence. Holmes gave support to the state's authority to deny the most basic civil rights including the rights of privacy, parenthood, and bodily integrity to people with cognitive disabilities. The frightening decision is worth re-reading and in part Holmes wrote:
We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for the lesser sacrifices, often not felt to be such by those concerned, in order to prevent our being swamped with incompetence. It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or let them starve for imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the fallopian tubes... Three generations of imbeciles are enough.
While shocking to read in retrospect, are we really doing a better job caring for people with cognitive and physical disabilities today? I would argue the NY Times article provided a lurid and resounding no. I frankly cannot stomach the details provided by the NY Times. It is just too horrible for me to contemplate. Instead I rail against American society that tolerates such abuse and has done so for decades. The violation of the basic rights of a group of people is unacceptable. All agree with this sentiment but I do not see measurable social change. We need to understand such marginalization and consequent abuse has not substantially changed since 1927. In every era ideas about people with profound cognitive and physical disabilities have been put forth, solutions offered and changes made. But none of this gets to the core issue: that these people have inalienable rights that must be respected. Any discussion must be framed within this larger context.
I urge readers to look at the NY TImes article. It is grim reading. It should make one angry--deeply angry that those least able to protect themselves are being abused. The abuses are nothing short of horrific. It makes one question humanity. It also made me upset we as Americans have never really had a national dialogue about how to care for people with profound cognitive and physical deficits. If the article in question posses more than a grain of truth we as a society are failing--a failure that dates back a century or more. When I read the story I was moved to tears. How can people abuse others and live with themselves. It is nothing short of evil. But evil lurks in the hearts of many. To counteract such evil we need to openly discuss how we should care for people who cannot care for themselves. I would argue our society has the moral responsibility to do this. I have little faith the courts or politicians can do anything to ameliorate the situation unless a great number of citizens all rise in protest. I do not see this happening either. Why am I so pessimistic? I have read too much about ugly laws, institutionalization, legal abuses, and cases such as Buck v Bell. When I read the story my first thought was that in a horrible way the article highlights much of what Allison C. Carey wrote in her insightful and important book On the Margins of Citizenship. People with cognitive disabilities have historically been marginalized and excluded. Segregation remains the norm for children and adults with profound cognitive and physical impairment. Sure we have group homes in communities but that does not mean the residents are welcome. I live near two group homes and I have seen these people escorted to the local super market in a van. Sadly but hardly a shock to me, the supermarket empties out in world record time when group home residents appear. There is no effort to hide the bias or distinct and palatable level of discomfort. This is an indictment on us not the residents. These people inalienable civil rights are violated on a regular basis. So I reiterate, not much has changed since 1972. But I would go farther, not much has changed since 1927and the notorious Buck v Bell decision written by none other than the widely praised jurist Oliver Wendell Holmes. The denial of Carrie Buck's rights are a low point int he history of jurisprudence. Holmes gave support to the state's authority to deny the most basic civil rights including the rights of privacy, parenthood, and bodily integrity to people with cognitive disabilities. The frightening decision is worth re-reading and in part Holmes wrote:
We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for the lesser sacrifices, often not felt to be such by those concerned, in order to prevent our being swamped with incompetence. It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or let them starve for imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the fallopian tubes... Three generations of imbeciles are enough.
While shocking to read in retrospect, are we really doing a better job caring for people with cognitive and physical disabilities today? I would argue the NY Times article provided a lurid and resounding no. I frankly cannot stomach the details provided by the NY Times. It is just too horrible for me to contemplate. Instead I rail against American society that tolerates such abuse and has done so for decades. The violation of the basic rights of a group of people is unacceptable. All agree with this sentiment but I do not see measurable social change. We need to understand such marginalization and consequent abuse has not substantially changed since 1927. In every era ideas about people with profound cognitive and physical disabilities have been put forth, solutions offered and changes made. But none of this gets to the core issue: that these people have inalienable rights that must be respected. Any discussion must be framed within this larger context.
Friday, March 11, 2011
Cure for SCI and Being a Bad or Good Cripple
Many people do not get why I think of myself as being a bad cripple. The moniker I have used is a puzzle. I always hear the refrain "but you are such a pleasant person". I am indeed a mild mannered though a bit intense person. Although it is impossible to ever really know, I would argue I am easy to be around. I truly value stability in personal relationships and in my life as a whole. Hence when my niece who is extremely disability aware hears me use the phrase bad cripple she cringes. I am a bad cripple because I am violating certain social norms. People with a disability you see are supposed to be miserable. We are expected to be constantly seeking out a cure. We should be spending all our time working toward this goal with various doctors and rehabilitation centers. These doctors are supposed to be brilliant, devoted to helping the less fortunate. The more exotic and innovative the cure the better we people with disabilities are perceived to be. Hence if you want to raise money and go to China for dubious stem cell treatment you will be lauded for your efforts. The risk involved and the long odds to success in terms of cure are not relevant. You are doing your best, searching out every possible cure and damn the risk you are going for it. You are a hero! Think Christopher Reeve as the archetype the media and society lauds--he was the classic good cripple. Who is the is the archetype of the bad cripple? People like me that express no interest whatsoever in cure. I am not against cure for spinal cord injury. Read that sentence again please. Such research is important and worthwhile. I support the efforts of researchers assuming they do not use images and notions of pity to raise money. At a personal level however, I find such research irrelevant to my life. Why undergo treatment that has no track record, the long term implications unknown, and results iffy at best. I am quite content with my crippled body. I like my body. Would I prefer not to be paralyzed? Of course. But I would also like to be stunningly handsome and am not. The simple fact is there is nothing i cannot do that a person who walks can do. Paralysis has not stopped me from getting an outstanding education, publishing my work, teaching, getting married (and divorced), fathering a child etc. All these ordinary experiences are thought to be out of the realm of people with a disability. Hence it is not paralysis that has been the bane of my existence but the way people react to my paralysis and wheelchair use.
I think we as American are more comfortable with the good cripple. The good cripple wants nothing more than to overcome his or her disability. The good cripple accepts that the normal body, the bipedal human body, is the cultural ideal. The good cripple accepts a socially inferior position in society, happy for a hand out and all too willing to exploit their diminished social status. Need to raise money? Just get up on stage and say I want to walk again. People will cheer your efforts and write check. Enter me, the bad cripple. I am, please brace yourself, happy. Oh, the nerve! Worse yet I do not have an interest in a cure for spinal cord injury. What do I expect? To be treated as a sentient being. I consider myself to be equal to my bipedal peers. This is a social afront. Why imagine the nerve? I expect the country to be accessible. When I confront needless architectural and social barriers I get angry. I have rights and I assert them. This makes me about as popular as Oliver Perez among NY Mets fans. No one wants to confront an angry cripple. He should be happy for society largesse. He should be pining away for a cure. He should not be upset we the almighty and powerful bipedal humans forget to include access. We are ever so sorry. Come back another day and if we deem it worthwhile we will make our facility accessible. My reaction is blunt: screw you. You are breaking the law and an old one at that. I do not want a hand our or charity, I want to be treated with equality and respect. Many do not know how to react to this firm assertion of my inalienable civil rights. The travel industry, in particular mass transportation, seems the most oblivious to disability rights.
What I find perplexing is why? Why are disability rights perceived to be different, vastly different to all other important civil rights we as Americans value. Separate in terms of race and education is a given. All are taught about Brown vs. the Board of Education Supreme Court decision. It is the bedrock of our public education school system. But how come separate is acceptable when it comes to transporting and educating children with a disability? I saw gross violations of the ADA at the public school my son attended, violations that impeded my ability to be an active and involved parent.
In one of my favorite memoirs written by a person with a disability Stephen Kuusisto's Planet of the Blind he wrote that "on the planet of the blind no one needs to be cured". Wow! Wow, not because of the beautiful prose but rather the affirmation of the civil rights of blind people and by extension all others with a disability. Kuusisto made this same point in a post at his blog Planet of the Blind yesterday. The post in question, Project 3000 and Post -Molecular Medicine at the University of Iowa's Institute for Vision Research, discussed cure, the medical model of disability, disability rights, and the care cure divide. He closed this post with a quote from his colleague Edwin Stone.
“Blind people need to go to the eye doctor for general ophthalmological care—blind eyes are still important eyes.
One day Ed said to me:
The evangelical disabled person might adopt the attitude, ‘Why do I need to be cured? I’m fine as I am,’ while the evangelical curing person might adopt the posture, ‘Why spend any resources on figuring out ways to accommodate visually disabled people? We ought to spend time trying to cure them,’” “It’s grossly inappropriate that these two concepts are so separate. There’s no reason we can’t pursue both—aspire to reduce blindness through surgical or medical treatments, while simultaneously being sensitive to the needs of people who are visually impaired and working to help them in every way possible.”
Amen, care and cure are not mutually exclusive. Kuusisto thinks this is taking place in ophthalmological care. I do not doubt his assessment. However, I would contend such a nuanced view has not extended beyond this field and is far from being accepted in the medical industrial complex. For people with a disability to be accepted as equals the medical model of disability must be rejected and a far more nuanced understanding of physical difference must be accepted. I do not see this happening any time soon when it comes to spinal cord injury. Kuusisto thinks this revolution is underway. Sorry but I disagree. I disagree because i have had way too much contact with the medical industrial complex lately from wound care to urological surgery. One theme, a constant, has been a gross lack of physical access and a social understanding of the nature of disability. Some of the problems are purely medical but the vast majority of obstacles are social. Simply put, access in the broadest sense of the term is not valued or desired. Much money is spent on what I call window dressing--what people with no experience or knowledge of disability think is important. Hence we get lots of electric door openers and a multitude of accessible bathrooms all located in the wrong place. Why are such errors made? Again, simple: not enough people with a disability are woven into the fabric of society. We have no voice when decisions are being made that impact us directly. This is a problem that will take many more decades to rectify.
I think we as American are more comfortable with the good cripple. The good cripple wants nothing more than to overcome his or her disability. The good cripple accepts that the normal body, the bipedal human body, is the cultural ideal. The good cripple accepts a socially inferior position in society, happy for a hand out and all too willing to exploit their diminished social status. Need to raise money? Just get up on stage and say I want to walk again. People will cheer your efforts and write check. Enter me, the bad cripple. I am, please brace yourself, happy. Oh, the nerve! Worse yet I do not have an interest in a cure for spinal cord injury. What do I expect? To be treated as a sentient being. I consider myself to be equal to my bipedal peers. This is a social afront. Why imagine the nerve? I expect the country to be accessible. When I confront needless architectural and social barriers I get angry. I have rights and I assert them. This makes me about as popular as Oliver Perez among NY Mets fans. No one wants to confront an angry cripple. He should be happy for society largesse. He should be pining away for a cure. He should not be upset we the almighty and powerful bipedal humans forget to include access. We are ever so sorry. Come back another day and if we deem it worthwhile we will make our facility accessible. My reaction is blunt: screw you. You are breaking the law and an old one at that. I do not want a hand our or charity, I want to be treated with equality and respect. Many do not know how to react to this firm assertion of my inalienable civil rights. The travel industry, in particular mass transportation, seems the most oblivious to disability rights.
What I find perplexing is why? Why are disability rights perceived to be different, vastly different to all other important civil rights we as Americans value. Separate in terms of race and education is a given. All are taught about Brown vs. the Board of Education Supreme Court decision. It is the bedrock of our public education school system. But how come separate is acceptable when it comes to transporting and educating children with a disability? I saw gross violations of the ADA at the public school my son attended, violations that impeded my ability to be an active and involved parent.
In one of my favorite memoirs written by a person with a disability Stephen Kuusisto's Planet of the Blind he wrote that "on the planet of the blind no one needs to be cured". Wow! Wow, not because of the beautiful prose but rather the affirmation of the civil rights of blind people and by extension all others with a disability. Kuusisto made this same point in a post at his blog Planet of the Blind yesterday. The post in question, Project 3000 and Post -Molecular Medicine at the University of Iowa's Institute for Vision Research, discussed cure, the medical model of disability, disability rights, and the care cure divide. He closed this post with a quote from his colleague Edwin Stone.
“Blind people need to go to the eye doctor for general ophthalmological care—blind eyes are still important eyes.
One day Ed said to me:
The evangelical disabled person might adopt the attitude, ‘Why do I need to be cured? I’m fine as I am,’ while the evangelical curing person might adopt the posture, ‘Why spend any resources on figuring out ways to accommodate visually disabled people? We ought to spend time trying to cure them,’” “It’s grossly inappropriate that these two concepts are so separate. There’s no reason we can’t pursue both—aspire to reduce blindness through surgical or medical treatments, while simultaneously being sensitive to the needs of people who are visually impaired and working to help them in every way possible.”
Amen, care and cure are not mutually exclusive. Kuusisto thinks this is taking place in ophthalmological care. I do not doubt his assessment. However, I would contend such a nuanced view has not extended beyond this field and is far from being accepted in the medical industrial complex. For people with a disability to be accepted as equals the medical model of disability must be rejected and a far more nuanced understanding of physical difference must be accepted. I do not see this happening any time soon when it comes to spinal cord injury. Kuusisto thinks this revolution is underway. Sorry but I disagree. I disagree because i have had way too much contact with the medical industrial complex lately from wound care to urological surgery. One theme, a constant, has been a gross lack of physical access and a social understanding of the nature of disability. Some of the problems are purely medical but the vast majority of obstacles are social. Simply put, access in the broadest sense of the term is not valued or desired. Much money is spent on what I call window dressing--what people with no experience or knowledge of disability think is important. Hence we get lots of electric door openers and a multitude of accessible bathrooms all located in the wrong place. Why are such errors made? Again, simple: not enough people with a disability are woven into the fabric of society. We have no voice when decisions are being made that impact us directly. This is a problem that will take many more decades to rectify.
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