There were many things I never understood about Christopher Reeve after he was paralyzed. Foremost among them his intense and singular focus on cure. His vow to walk again was hardly unusual as many make the same pronouncement after a traumatic injury. In 2002 I was severely critical of Reeve in an essay that appeared in the Ragged Edge--"Wishing for Kryptonite". I maintained that Reeve's overwhelming interest in cure was highly unusual--that virtually no one has ever been willing to devote all their time and money in an effort to be cured. A newspaper article in the local paper, "Portchester Woman Happy with Progress after Chinese Spinal Surgery" makes me wonder if my views about cure are correct (www.lohud.com/apps/pbcs.dll/article?AID=/20070928/news02/709280387).
In the above article, Christan Zaccagnino who lives just 30 minutes away from me, went to Beijing where she underwent spinal surgery. If Ms. Zaccagnino had been paralyzed within the last two or three years, I would not be surprised by her decision to search out a cure for her paralysis. However, Ms. Zaccagnino was paralyzed 14 years ago in a diving accident when she was 10 years old. Given this, I cannot begin to understand her thought process. Undoubtedly she was aware that the neurosurgeon who operated on her, Hongyun Huang, treatement is not just controversial but has no documented success rate. American neurologists strongly advise patients against the invasive procedure because some people had serious complications such as meningtis. This did not stop Ms. Zaccagnino from traveling to China or raising $30,000 needed for the surgery through fund raisers. According to the article, Ms. Zaccagnino is not alone--400 other paralyzed people have made a similar journey and undergone what appears to be a high risk procedure.
It would be easy for me to be critical of Ms. Zaccagnino and her strong religious convictions--she refused to have cells from aborted human fetuses implanted by Dr. Huang as is the norm in the preocdure she underwent. Like Reeve who also underwent questionable medical proceedures, the gains for Ms. Zaccagnino's were minimal. This leads me to ask, why take such a chance? Is walking really that important? Based on my life experience, walking is highly over rated. Humans are amazingly adaptable and there is very little I cannot do. So why have 400 people traveled to Beijing to be cured? I think such individuals are self absorbed narcissists. It is far easier to accept dominate socio cultural norms about disability than it is to rail against injustices and fight for equal rights. It is easy to sit around (pun intended) and pray for a cure than it is to go out into the world and get a job. It is easy to thoughtlessly use ramps and elevators disability activists fought decades for. It is easy to go to college and not think about the men and women who had to fight for the right to be educated in the 1970s. It is too easy to forget about people like Ed Roberts or Justin Dart. It is easy to just accept the ADA exists however weak it may now be without considering what it was like to prior to 1990.
If I have learned one thing in the last 30 years I have been paralyzed it is that being disabled is social problem. The real obstacles are not architectural but social. How else can one explain why 66% of Americans with a disability are unemployed and do not have access to adequate health insurance. Do not get me wrong, I am not against a cure for paralysis. This is a lofty goal. Perhaps I too am a narcissist for my goal is for paralyzed people to be equal to their fellow humans who are bipedal. This is in my best interests. For me, civil rights are more important than walking.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
Search This Blog
Thursday, October 4, 2007
Why Focus on Cure?
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Friday, September 14, 2007
Revelation for the NYT Dining Critic
New York is a hard city. It is an even harder city when a person who uses a wheelchair wants to dine out. Althought the New York Times dining critics include brief reference to wheelchair access, I have learned not to rely on this information. Most people who use a wheelchair and dine out know they are too often directed to the worst table in the dining room. Getting to and navigating within a dining room can also be a challenge. As for accessible bathrooms, that is a pipe dream. This is hardly ground breaking news but for the NYT critic, Frank Bruni, it is. In a recent column, When Accessibility Isn't Hospitality (http://www.nytimes.com/2007/09/12/dining/12acce.html) he is amazed to discover that even though he asked about access for his reviews he "didn't appreciate the obstacles people without full mobility face until I dined with one of them". No wonder I don't trust the NYT.
It was nice of Mr. Bruni to dine out "with one of them". Aside from the demeaning choice of words, Mr. Bruni seems to have discovered what I and most people who use a wheelchair already know--there is giant gulf between what is perceived to be accessible and reality. The barriers encountered are architectural--even 17 years after the ADA was passed--and attitudinal. For example, if a dining room is accessed by a wheelchair lift I will routinely encounter one of the following problems: the lift will be broken, the power turned off, the key used to operate it missing or the lift itself filled with trash or used as a storage closet. I have also learned that many restaraunts have what I call the "cripple table"--the one table where all people who use a wheelchair are directd to. Generally this table is in a corner and as far away from others diners as possible.
What Mr Bruni and his temporarily disabled friend with whom he dined fail to realize is that the ADA is not just about wheelchair lifts, elevators, and accessible bathrooms. The ADA is civil rights legislation first and foremost. Access is not provided because businesses want to be accessible out of the goodneess of their heart but rather due to the fact it is the law. Diners who use a wheelchair have the same rights as those that walk in the door--and those rights are violated on a daily basis. The violation of these rights are not, as Mr. Bruni writes, relatively minor inconveniences. Such "inconveniences" are illegal. Why is it okay to "inconvenience" a person who uses a wheelchair but socially unacceptable to make all black people sit in a particular area? Segregation eneded a long time ago for blacks but remains socially acceptable for crippled people. As for Mr. Bruni's temporarily disabled dinner guest, she too does not understand the meaning of access as required by the ADA. If she had a glimmer of understanding, she would not have carried a 12 pound fiberglass ramp with her to get into restaurants with a step or two. In carrying this ramp she is accepting a subserviant social status and sending a very bad message--access is an individual person's problem. Businesses need not be accessible, it is their problem not mine.
I appreciate Mr. Bruni's effort to understand the inherent problems diners who use a wheelchair encounter. I think he would be well served, pun intended, if he dined regularly with a person such as myself who has used a wheelchair for over thirty years. Like others who have thought long and hard about the inequities associated with using a wheelchair, I pereceive the ADA as it should be--ground breaking civil rights legislation. When businesses, restaurants and ordinary indviduals such as Mr. Bruni come to this realization, perhaps I will be able to dine out like any other bipedal person.
It was nice of Mr. Bruni to dine out "with one of them". Aside from the demeaning choice of words, Mr. Bruni seems to have discovered what I and most people who use a wheelchair already know--there is giant gulf between what is perceived to be accessible and reality. The barriers encountered are architectural--even 17 years after the ADA was passed--and attitudinal. For example, if a dining room is accessed by a wheelchair lift I will routinely encounter one of the following problems: the lift will be broken, the power turned off, the key used to operate it missing or the lift itself filled with trash or used as a storage closet. I have also learned that many restaraunts have what I call the "cripple table"--the one table where all people who use a wheelchair are directd to. Generally this table is in a corner and as far away from others diners as possible.
What Mr Bruni and his temporarily disabled friend with whom he dined fail to realize is that the ADA is not just about wheelchair lifts, elevators, and accessible bathrooms. The ADA is civil rights legislation first and foremost. Access is not provided because businesses want to be accessible out of the goodneess of their heart but rather due to the fact it is the law. Diners who use a wheelchair have the same rights as those that walk in the door--and those rights are violated on a daily basis. The violation of these rights are not, as Mr. Bruni writes, relatively minor inconveniences. Such "inconveniences" are illegal. Why is it okay to "inconvenience" a person who uses a wheelchair but socially unacceptable to make all black people sit in a particular area? Segregation eneded a long time ago for blacks but remains socially acceptable for crippled people. As for Mr. Bruni's temporarily disabled dinner guest, she too does not understand the meaning of access as required by the ADA. If she had a glimmer of understanding, she would not have carried a 12 pound fiberglass ramp with her to get into restaurants with a step or two. In carrying this ramp she is accepting a subserviant social status and sending a very bad message--access is an individual person's problem. Businesses need not be accessible, it is their problem not mine.
I appreciate Mr. Bruni's effort to understand the inherent problems diners who use a wheelchair encounter. I think he would be well served, pun intended, if he dined regularly with a person such as myself who has used a wheelchair for over thirty years. Like others who have thought long and hard about the inequities associated with using a wheelchair, I pereceive the ADA as it should be--ground breaking civil rights legislation. When businesses, restaurants and ordinary indviduals such as Mr. Bruni come to this realization, perhaps I will be able to dine out like any other bipedal person.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Tuesday, September 11, 2007
Fear of Hospitals
I am afraid of being admitted to a hospital. I am not afraid of getting sick but rather worry about how I will be treated once I am admitted to a hospital. Caring for one's paralyzed body is not difficult but there are certain things such as skin care that require more vigilence. If hospitalized I may need help and being dependent upon nursing care is risky proposition. Today, even the most dedicated nurses cannot possibly provide the sort of treatment they would like to provide. Hospitals are run like a business and crippled people are a bad investment. Crippled people may require more care. Even worse, crippled people are thought to be complicated, that is their care and medical history is involved and will force medical personnel to spend more time with them. When these variables are combined with the belief that the life of a crippled person may not be as valuable as that of another person who can walk my level of concern rises exponentially.
My friend who is a physician's assistant thinks my concerns about being hospitalized are unfounded. I hope she is correct because it has been a bad year for crippled people who enter the hospital. This thought struck me today when I read Disability Studies at Temple University blog (disstud.blogspot) about the death of Linda Sue Brown. As reported in the LA Times, after Ms. Brown died her sisters were stunned by what they discovered--consent forms were forged and the care she received was questionable at best. I for one am not surprised that Ms. Brown received poor treatment, was subjected to what appears to have been risky surgery--a hysterectomy. The fact is Ms. Brown did not have the cognitive skills to consent to surgery but that did not stop surgeons from operating on her. This story reminds me of the Ashley Treatment I wrote about earlier this year for Counter Punch. Both Ms. Brown and Ashley were subjected to surgery that violated their rights as patients. Both families were involved--in Ashley's Case her parents consented to the removal of her uterus, breast buds, appendix and spleen as part of what they identified as the "Ashley Treatment". In Ms. Brown's case her sisters questioned the treatment she received and after months of investigation inspectors concluded the hospital failed to provide appropriate care.
The issues involved in the care and treatment of Ashley and Ms. Brown are quite different. But what links them is the violation of their rights. Both had loving families, were admitted to a hospital, and were subjected to surgery that was not legal. Why did these hospitals fail to protect their rights? What does this failure say about the treatment and cutural perception of crippled people? In my estiamtion, these cases highlight that the medical establishment does not value the life of crippled people. Hospitals and surgeons are more likely to perform risky surgery on crippled people because they think they are in desperate need of repair. What are the consequences of these actions? Not much, the hospitals in question receive bad publicity and no one is held legally accountable. Patients, even crippled ones, have rights and it well past time hospitals were made aware of that fact. I for one plan on memorizing a Patients Bill of Rights before driving to any hospital.
My friend who is a physician's assistant thinks my concerns about being hospitalized are unfounded. I hope she is correct because it has been a bad year for crippled people who enter the hospital. This thought struck me today when I read Disability Studies at Temple University blog (disstud.blogspot) about the death of Linda Sue Brown. As reported in the LA Times, after Ms. Brown died her sisters were stunned by what they discovered--consent forms were forged and the care she received was questionable at best. I for one am not surprised that Ms. Brown received poor treatment, was subjected to what appears to have been risky surgery--a hysterectomy. The fact is Ms. Brown did not have the cognitive skills to consent to surgery but that did not stop surgeons from operating on her. This story reminds me of the Ashley Treatment I wrote about earlier this year for Counter Punch. Both Ms. Brown and Ashley were subjected to surgery that violated their rights as patients. Both families were involved--in Ashley's Case her parents consented to the removal of her uterus, breast buds, appendix and spleen as part of what they identified as the "Ashley Treatment". In Ms. Brown's case her sisters questioned the treatment she received and after months of investigation inspectors concluded the hospital failed to provide appropriate care.
The issues involved in the care and treatment of Ashley and Ms. Brown are quite different. But what links them is the violation of their rights. Both had loving families, were admitted to a hospital, and were subjected to surgery that was not legal. Why did these hospitals fail to protect their rights? What does this failure say about the treatment and cutural perception of crippled people? In my estiamtion, these cases highlight that the medical establishment does not value the life of crippled people. Hospitals and surgeons are more likely to perform risky surgery on crippled people because they think they are in desperate need of repair. What are the consequences of these actions? Not much, the hospitals in question receive bad publicity and no one is held legally accountable. Patients, even crippled ones, have rights and it well past time hospitals were made aware of that fact. I for one plan on memorizing a Patients Bill of Rights before driving to any hospital.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
A New Beginning
I have started this blog for a number of reasons. First, I want to prove to my son Tom that I may not quite be as stupid as he thinks I am. Second, I want to comment on disability related topics I see in the news that have a skewed perpective. Third, I am impressed with disability related blogs and want to add my views with regard to the social implications of disability. Fourth, I want to my name and work to become more public so when my book, Bad Cripple: A Protest from an Invisible Man, is published next year it will sell, sell, sell.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Subscribe to:
Posts (Atom)