When I enter an airplane I know that if there is a crash my chance of survival, already slim to begin with, are virtually nil because of my inability to walk. In the event of a disastrous crash I am under no illusion that any of my fellow passengers or airline personnel are going to help me get out of a plane. While I have no trouble accepting this reality, I was disturbed to read an AP report about a group of doctors who are trying to determine who should be saved in the event of a pandemic flu or other large scale disaster. In 2007 a task force was created to address this issue. Among those agencies involved were the Department of Homeland Security, the Centers for Disease Control and Prevention, and the Department of Health and Human Services.
The people involved had an unenviable job--make God like decisions about who will live and who will die. Among those selected to die include the following:
People over 85.
People with severe trauma such as victims of shootings or car accidents.
People older than 60 who are burn patients.
People with sever mental impairments such as Alzheimers.
People with sever chronic illnesses sucha s heart disease or diabetes.
My first thought when I read the AP report, "Who Should MDs let Die in a Pandemic" was singularly selfish--I was relieved to know I was not at the top of the list thereby assured that my life had value. This article led me to read the Summary of Suggestions From the Task Force for Mass Critical Care Summit held in January of 2007. Now, this summary was truly scary (http://www.chestjournal.org/cgi/content/full/133/5_suppl/1S). Part of me thinks that such a document is necessary. Afterall someone has to think about dooms day scenarios. But this thought was quickly replaced by the knowledge that disasters do indeed happen on a regular basis. As Hurricane Katrina taught us the people most likely to suffer are not necessarily the sickest members of society but rather the poor and disenfranchised. I understand that doctors are often faced with unenviable ethical dilemmas and are forced to play God. But I wonder how much attention those that attended this summit meeting gave to the poorest members of our society that are routinely denied adequate medical care. Study after study has shown that a disproportionate number of poor people suffer from chronic illnesses listed above and that disabled people often live at or below the poverty line. If a disaster occurs the poor and disabled are among the most likely to die. The reasons for this are as much social as they are medical.
The efforts made to determine who to save in the event of a disaster are a grim reminder that humans are forever vulnerable to disease and the power of nature. Yet the document produced is not a straight forward blueprint about how hospitals and institutions should react than it is a referendum about the value we place on the lives of others. To me, the recommendations are a political minefield that speaks volumes about members of our society who are either too poor or physically unable to care themselves. Surely the people in question who attended this summit meeting can do better or at least try to determine a way to save all humans--those rich and poor, disabled and not disabled.
Wednesday, May 7, 2008
Monday, May 5, 2008
Wheelchair Companies: Inferior Products and Services
This morning I read the following post at Pitt Rehab:
"I ordered my new wheelchair parts on April 3 and I still have not heard from the durable medical equipment company. I guess I need to give them a call today and find out if any of the parts are even in.
Can you imagine waiting on a part for your car for one month? Do you think it would be acceptable? What bothers me the most is no sense of urgency on the part of the durable medical equipment company. If you're in the Pittsburgh area I would not recommend using Apria health care. The technicians are always nice when they come out but everything takes forever to be accomplished."
I have not dealt with a wheelchair company in over 20 years because of similar problems expressed above. Within a few years of using a wheelchair I concluded all wheelchair companies and surgical supply companies had one thing in common--inferior and poorly designed products and, secondly, grossly rude and inferior service. Luckily I do not need a complex wheelchair. I have three identical wheelchairs that I subject to all sorts of abuse. The frames have a service life of more than 15 years and I farm out moving parts to companies that specialize in bikes, yachts or custom motorcycle repair. I expect and receive excellent service.
My solution to the mechanical working of my wheelchair is unique and expensive. It is also highly individualized and one that bothers me as I enjoy freedoms few other wheelchair users enjoy. Thus my heart goes out to all those that are forced to deal with wheelchair companies. Wheelchairs are not designed to last and provide reliable use. I will acknowledge that one cannot expect all parts of a wheelchair to last a long period of time. Bearings and tires wear out on a regular basis and need to be replaced. But wheelchair companies do not stock needed parts nor does any company I have ever heard of repair a wheelchair in a timely fashion. This is not just unacceptable it is criminal.
Why I wonder do wheelchair users such as myself take advantage of the internet? There is historical precedent for this. In the 1940s Virginia Grace Wilson Laurie, popularly known as Gini, began the Toomy j. Gazette that would go on to become the Rehabilitation Gazette in 1970. This publication began as a way to keep people who had been hospitalized with polio in contact with one another. As the years passed it became an early voice in the disability rights movement and go to guide to finding the answer to adaptive equipment. No such publication exists today, that is a publication specifically geared to finding the correct adaptive gear or as in the case above the appropriate part for a wheelchair in need of repair. There is a modern day equivalent--internet car forums. As the owner of a VW Touareg, an SUV with gadgets galore, I have found answers to some obscure questions by reading VW forums.
The above makes me wonder why such forums about wheelchairs do not exist. This would solve many problems if the corporations that manufacture wheelchairs would support them. I sincerely doubt this will ever happen as the profit margin is not to be found in the repair of a perfectly good wheelchair that needs a new part. Perhaps independent living centers could take the lead. Such centers are likely to work with a host of different wheelchair users and wheelchairs in need of repair. Surely maintaining a forum about wheelchair companies and wheelchair parts would not be expensive to host. Such a forum if it existed could also change the lives of disabled people. For instance, people would not need to wait months for a part to arrive. Better yet, wheelchair reviews could be posted by the real experts--the people who use them. The more I think about this the more I like the idea. Of course, one must expect the proverbial but... and here is comes: I do not have an interest or knowledge to start this and maintain it. Yet I do know the need exists. Surely some smart reader out there can run with this idea. Perhaps such a forum even exists that I do not know about. In the meantime, for all those with a wheelchair in need of repair know there is at least one guy out there that understands your frustration.
"I ordered my new wheelchair parts on April 3 and I still have not heard from the durable medical equipment company. I guess I need to give them a call today and find out if any of the parts are even in.
Can you imagine waiting on a part for your car for one month? Do you think it would be acceptable? What bothers me the most is no sense of urgency on the part of the durable medical equipment company. If you're in the Pittsburgh area I would not recommend using Apria health care. The technicians are always nice when they come out but everything takes forever to be accomplished."
I have not dealt with a wheelchair company in over 20 years because of similar problems expressed above. Within a few years of using a wheelchair I concluded all wheelchair companies and surgical supply companies had one thing in common--inferior and poorly designed products and, secondly, grossly rude and inferior service. Luckily I do not need a complex wheelchair. I have three identical wheelchairs that I subject to all sorts of abuse. The frames have a service life of more than 15 years and I farm out moving parts to companies that specialize in bikes, yachts or custom motorcycle repair. I expect and receive excellent service.
My solution to the mechanical working of my wheelchair is unique and expensive. It is also highly individualized and one that bothers me as I enjoy freedoms few other wheelchair users enjoy. Thus my heart goes out to all those that are forced to deal with wheelchair companies. Wheelchairs are not designed to last and provide reliable use. I will acknowledge that one cannot expect all parts of a wheelchair to last a long period of time. Bearings and tires wear out on a regular basis and need to be replaced. But wheelchair companies do not stock needed parts nor does any company I have ever heard of repair a wheelchair in a timely fashion. This is not just unacceptable it is criminal.
Why I wonder do wheelchair users such as myself take advantage of the internet? There is historical precedent for this. In the 1940s Virginia Grace Wilson Laurie, popularly known as Gini, began the Toomy j. Gazette that would go on to become the Rehabilitation Gazette in 1970. This publication began as a way to keep people who had been hospitalized with polio in contact with one another. As the years passed it became an early voice in the disability rights movement and go to guide to finding the answer to adaptive equipment. No such publication exists today, that is a publication specifically geared to finding the correct adaptive gear or as in the case above the appropriate part for a wheelchair in need of repair. There is a modern day equivalent--internet car forums. As the owner of a VW Touareg, an SUV with gadgets galore, I have found answers to some obscure questions by reading VW forums.
The above makes me wonder why such forums about wheelchairs do not exist. This would solve many problems if the corporations that manufacture wheelchairs would support them. I sincerely doubt this will ever happen as the profit margin is not to be found in the repair of a perfectly good wheelchair that needs a new part. Perhaps independent living centers could take the lead. Such centers are likely to work with a host of different wheelchair users and wheelchairs in need of repair. Surely maintaining a forum about wheelchair companies and wheelchair parts would not be expensive to host. Such a forum if it existed could also change the lives of disabled people. For instance, people would not need to wait months for a part to arrive. Better yet, wheelchair reviews could be posted by the real experts--the people who use them. The more I think about this the more I like the idea. Of course, one must expect the proverbial but... and here is comes: I do not have an interest or knowledge to start this and maintain it. Yet I do know the need exists. Surely some smart reader out there can run with this idea. Perhaps such a forum even exists that I do not know about. In the meantime, for all those with a wheelchair in need of repair know there is at least one guy out there that understands your frustration.
Wednesday, April 30, 2008
ADAPT and Social Change
Inclusion for disabled people is never easy or welcomed. Progress takes place when disabled people force society to change. The most successful force in my estimation is protest and civil disobedience. Within the disability community the group that has been most successful in this regard is ADAPT. I have the utmost respect for ADAPT--they have been on the front lines of the battle for inclusion for 25 years. This week ADAPT is at it again much to the chagrin of those they target. The target this week was Senator John McCain. At issue is a bill to expand Medicaid coverage to those that want in home care rather than being forced into a nursing home. Sponsored by Tom Harkin and Arlen Specter the bill is cosponsored by Clinton and Obama. According to news reports, McCain's Senate Chief of Staff did not know the senators position on the legislation.
ADAPT protests are hard to forget. They are led by Bob Kafka, national organizer, and ADAPT protests are a loud in your face assault. This weeks action was no exception. At least 20 disabled activists were arrested outside McCain's office in the Russell Senate Office Building and charged with unlawful assembly. Apparently McCain was not in Washington when the protest took place. ADAPT chose not to meet with McCain's staff. This should come as no surprise given the fact that McCain's Chief of Staff did not know the senators position on the bill in question. It is unlikely that McCain will ever meet with ADAPT members. This is unfortunate but to be expected as McCain has no interest in disability rights and groupd such as ADAPT.
I am hopefully embedding a short clip from Youtube here--this is my first attempt to include a video on my blog. ADAPT protests must been seen to be understood the power they have. These men and women of ADAPT are of central importance to social change. I think of them every day as I know without them ramps, elevators, lifts, and accessible buses I ride on would not exist if it were not for ADAPT. If there are heroes among the population of disabled people it does not include people like me. Rather it is those disabled people willing to risk the wrath of the government and police and their willingness to be arrested for a cause they believe in.
ADAPT protests are hard to forget. They are led by Bob Kafka, national organizer, and ADAPT protests are a loud in your face assault. This weeks action was no exception. At least 20 disabled activists were arrested outside McCain's office in the Russell Senate Office Building and charged with unlawful assembly. Apparently McCain was not in Washington when the protest took place. ADAPT chose not to meet with McCain's staff. This should come as no surprise given the fact that McCain's Chief of Staff did not know the senators position on the bill in question. It is unlikely that McCain will ever meet with ADAPT members. This is unfortunate but to be expected as McCain has no interest in disability rights and groupd such as ADAPT.
I am hopefully embedding a short clip from Youtube here--this is my first attempt to include a video on my blog. ADAPT protests must been seen to be understood the power they have. These men and women of ADAPT are of central importance to social change. I think of them every day as I know without them ramps, elevators, lifts, and accessible buses I ride on would not exist if it were not for ADAPT. If there are heroes among the population of disabled people it does not include people like me. Rather it is those disabled people willing to risk the wrath of the government and police and their willingness to be arrested for a cause they believe in.
Thursday, April 24, 2008
Berube Writes about Disability and Democracy
Michael Berube is a prolific and gifted scholar I admire very much. His observation about disability in American culture always make me think in new ways and are challenging at multiple levels. I just came across an article he wrote at Crooked Timber (http://crookedtimber.org/2008/04/22/disability-and-democracy/) two days ago. Berube sarcastically writes that it is well past time to write about Obama and Clinton respective views on disability because "(a) no one knows the candidates have policy positions on disability and (b) policy positions on disability are not as important as flag pins." I urge readers to go to Crooked Timber and read what Berube has written as his words are as entertaining as they are thought provoking.
Racism, Segregation and Disability
It has been more than 60 years since Jackie Robinson became the first black man to play major league baseball. On April 15, 1947 Robinson played his first game with the Brooklyn Dodgers ending eighty years of segregation. Every April newspapers print stories about Robinson and the abuse he was subjected to by racists. This year has been no different. Stories about Robinson abound and on April 15 baseball players were permitted to wear the number 42 on their jersey (Major League Baseball retired Robinson's jersey number in 1997). Avid baseball fans are familiar with Robinson accomplishments on and of the field. School children are taught about Robinson's place in history and his refusal to respond to the most vile racist taunts. This year I grew weary of newspaper articles that seemed to focus on peripheral issues such as which current stars elected to wear the number 42 in Robinson's honor. Inspired to learn more, I went on line and came away even more impressed with Robinson's accomplishments. I learned that Robinson was much more than a gifted baseball player whose dignity highlighted the inherent wrongs of segregation. Robinson was a political activist in every sense of the word. For years he wrote a syndicated newspaper column, was an ardent supporter of Malcolm X and Martin Luther King and forerunner of the civil rights movement.
Robinson's efforts were far greater than I had imagined and for the last two weeks have wondered why disability rights activists do not have a person of such character and fame. I have also wondered why disability rights in the broadest sense of the term has utterly failed to connect with other minority groups who encounter abuse, segregation, and purposeful discrimination. This disconnect is unfortunate because disabled people are among the most disenfranchised minority groups in this country (over 66% of all disabled people are unemployed) and are routinely subjected to shameful acts of exclusion and inexpressible cruelties—many of which are legal and socially sanctioned. The average American is taught that racism is wrong but that lesson does not extend to the rights of disabled people. Few care if disabled people are denied an education, segregated from their peers, and socially excluded. This angers me and reminds me of one of Martin Luther King most famous observations that touched millions: "injustice anywhere is a threat to justice everywhere".
King's famous phrase quoted above, was written on April 16, 1963 when King was in an Birmingham, Alabama jail. King’s “Letter from a Birmingham Jail” smuggled out of his cell one page at a time is considered a classic in world literature. It served as a clarion call to action because King noted that there were two types of laws—just an unjust. This led King to conclude that “one has the moral responsibility to disobey unjust laws” and his letter provided the philosophical foundation for the Civil Rights Movement. There are four elements in King's letter that remain relevant today. First, the collection and interpretation of facts and the determination that injustice exists. Second, identification of injustice and a rally cry for change. Third, negotiation with the oppressors designed to eliminate injustice. Fourth, direct action against a specific injustice aimed to force change. All those subjected to injustice based on race or disability know real freedom and equality is never voluntarily given--it must be demanded by the oppressed. This was true in 1947 and 1963 for black men such as Robinson and King and for disabled people today who struggle against social isolation, invisibility, and a legal system that is hostile to disability rights. At issue for disabled people is a moral responsibility to oppose injustice, that is to overturn unjust laws and social norms or codes that compel and force them to obey social strictures that are inherently wrong. For instance, there was no logical reason for blacks to be ordered to sit in the back of the bus while whites sat in front. Likewise, all new mass transportation systems should be fully accessible to disabled people and there is no need for para-transit systems to exist.
In spite of two decades of activism and the passage of much legislation, segregation from mainstream society remains an all too common form of segregation disabled people encounter. The Americans with Disability Act, passed over seventeen years ago, was designed to prohibit discrimination against disabled people in terms of employment and requires most businesses and public spaces to take “reasonable” steps to accommodate them. Thus the ADA is comparable to the Civil Rights Act of 1964 that, by establishing equal rights for minorities, provided a weapon for those struggling against injustice. While the Civil Rights Act has benefited many, it did not end injustice based on racial differences. Similarly, the ADA has benefited many but when the gains are measured against the gritty day to day reality disable people experience the law merely highlights the injustices that still exist. Thus I question what is the real value of the ADA and whether it is a just or unjust law. Needless social and architectural obstacles are the norm; for example elevators, if present, are made useless because they are locked; wheelchair lifts are often used to store trash, and bus drivers do not know how to operate a lift even though they are required by law to test it before they begin their work day. Such social and architectural injustices are accepted as inevitable, overlooked, and excused. This has led law makers to try and pass the ADA Restoration Act, an effort that amounts to tacit admission that the ADA had been gutted by the Supreme Court and that the law has failed to resonate with the general public.
King’s “Letter from a Birmingham Jail” conjured up images of all that was inherently wrong with racial segregation. Robinson's skills on a baseball diamond and dignity off the field did much the same. The laws that upheld segregation were clearly unjust and overturned by nonviolent direct action. Fighting against injustice now has universal appeal and King’s words serve as a reminder of how debilitating injustice is on the minds of all humans who experience it. Given this, King’s words still serve us well as they have inspired a new generation to bring gross injustices to the surface so that they can be seen, opposed and vanquished. The battle against injustice is long and arduous but with perseverance disabled people world wide will some day win.
Robinson's efforts were far greater than I had imagined and for the last two weeks have wondered why disability rights activists do not have a person of such character and fame. I have also wondered why disability rights in the broadest sense of the term has utterly failed to connect with other minority groups who encounter abuse, segregation, and purposeful discrimination. This disconnect is unfortunate because disabled people are among the most disenfranchised minority groups in this country (over 66% of all disabled people are unemployed) and are routinely subjected to shameful acts of exclusion and inexpressible cruelties—many of which are legal and socially sanctioned. The average American is taught that racism is wrong but that lesson does not extend to the rights of disabled people. Few care if disabled people are denied an education, segregated from their peers, and socially excluded. This angers me and reminds me of one of Martin Luther King most famous observations that touched millions: "injustice anywhere is a threat to justice everywhere".
King's famous phrase quoted above, was written on April 16, 1963 when King was in an Birmingham, Alabama jail. King’s “Letter from a Birmingham Jail” smuggled out of his cell one page at a time is considered a classic in world literature. It served as a clarion call to action because King noted that there were two types of laws—just an unjust. This led King to conclude that “one has the moral responsibility to disobey unjust laws” and his letter provided the philosophical foundation for the Civil Rights Movement. There are four elements in King's letter that remain relevant today. First, the collection and interpretation of facts and the determination that injustice exists. Second, identification of injustice and a rally cry for change. Third, negotiation with the oppressors designed to eliminate injustice. Fourth, direct action against a specific injustice aimed to force change. All those subjected to injustice based on race or disability know real freedom and equality is never voluntarily given--it must be demanded by the oppressed. This was true in 1947 and 1963 for black men such as Robinson and King and for disabled people today who struggle against social isolation, invisibility, and a legal system that is hostile to disability rights. At issue for disabled people is a moral responsibility to oppose injustice, that is to overturn unjust laws and social norms or codes that compel and force them to obey social strictures that are inherently wrong. For instance, there was no logical reason for blacks to be ordered to sit in the back of the bus while whites sat in front. Likewise, all new mass transportation systems should be fully accessible to disabled people and there is no need for para-transit systems to exist.
In spite of two decades of activism and the passage of much legislation, segregation from mainstream society remains an all too common form of segregation disabled people encounter. The Americans with Disability Act, passed over seventeen years ago, was designed to prohibit discrimination against disabled people in terms of employment and requires most businesses and public spaces to take “reasonable” steps to accommodate them. Thus the ADA is comparable to the Civil Rights Act of 1964 that, by establishing equal rights for minorities, provided a weapon for those struggling against injustice. While the Civil Rights Act has benefited many, it did not end injustice based on racial differences. Similarly, the ADA has benefited many but when the gains are measured against the gritty day to day reality disable people experience the law merely highlights the injustices that still exist. Thus I question what is the real value of the ADA and whether it is a just or unjust law. Needless social and architectural obstacles are the norm; for example elevators, if present, are made useless because they are locked; wheelchair lifts are often used to store trash, and bus drivers do not know how to operate a lift even though they are required by law to test it before they begin their work day. Such social and architectural injustices are accepted as inevitable, overlooked, and excused. This has led law makers to try and pass the ADA Restoration Act, an effort that amounts to tacit admission that the ADA had been gutted by the Supreme Court and that the law has failed to resonate with the general public.
King’s “Letter from a Birmingham Jail” conjured up images of all that was inherently wrong with racial segregation. Robinson's skills on a baseball diamond and dignity off the field did much the same. The laws that upheld segregation were clearly unjust and overturned by nonviolent direct action. Fighting against injustice now has universal appeal and King’s words serve as a reminder of how debilitating injustice is on the minds of all humans who experience it. Given this, King’s words still serve us well as they have inspired a new generation to bring gross injustices to the surface so that they can be seen, opposed and vanquished. The battle against injustice is long and arduous but with perseverance disabled people world wide will some day win.
Wednesday, April 16, 2008
An Example the New York Times Can Follow
Yesterday I posted an entry on my blog that was critical of the New York Times. This was not the first time I have taken an article in the New York Times to task. I do not anticipate it will be the last time I am critical of this influential national paper that seems to invariably screw up all stories about disability related topics. A friend sent me an email after reading my blog and asked if I had read any recent stories in the mainstream press that did not warrant such a stinging critique like the one I gave the New York Times. It did not take too long to come up with an affirmative response.
Although not of the same stature of the New York Times, I read an article in Diveristyinc entitled "7 Things NEVER to Say to People with Disabilities". Normally I do not like such lists but this article by Daryl Hannah was an exception. The author did her homework, talked to people at the National Organization on Disability and made a concerted effort to not only inform potential employers about possible pitfalls when interviewing a disabled person but provided U.S. Census Bureau data about the number of disabled people in the work force. More personally, I have been asked each of the seven things Ms. Hannah listed that should not be said to people with disabilities. Each and every question is rude, intrusive, and grossly inappropriate to ask any person who is or is not disabled.
It would be easy for me to quibble about some things Ms. Hannah wrote. However, the general points she made were on target, perfectly suited for a large or small company that might be seeking to hire a disabled employee. Given Ms. Hannah's probable audience, people who work in human resources that have little knowledge of disability, her article is constructive and likely to prevent a potential employer from inadvertently asking an insulting question. If Diversityinc can publish an informative article about disability surely the New York Times and other major media outlets can do so as well. Until that happens I will keep on reading the New York Times and skewering them when needed.
Although not of the same stature of the New York Times, I read an article in Diveristyinc entitled "7 Things NEVER to Say to People with Disabilities". Normally I do not like such lists but this article by Daryl Hannah was an exception. The author did her homework, talked to people at the National Organization on Disability and made a concerted effort to not only inform potential employers about possible pitfalls when interviewing a disabled person but provided U.S. Census Bureau data about the number of disabled people in the work force. More personally, I have been asked each of the seven things Ms. Hannah listed that should not be said to people with disabilities. Each and every question is rude, intrusive, and grossly inappropriate to ask any person who is or is not disabled.
It would be easy for me to quibble about some things Ms. Hannah wrote. However, the general points she made were on target, perfectly suited for a large or small company that might be seeking to hire a disabled employee. Given Ms. Hannah's probable audience, people who work in human resources that have little knowledge of disability, her article is constructive and likely to prevent a potential employer from inadvertently asking an insulting question. If Diversityinc can publish an informative article about disability surely the New York Times and other major media outlets can do so as well. Until that happens I will keep on reading the New York Times and skewering them when needed.
Tuesday, April 15, 2008
New York Times and Rich Cripples
The New York Times has a penchant for publishing amazingly demeaning articles about people who are disabled. A friend sent me a link to an article published last Sunday that took demeaning to an entirely new level. The article was published April 13 and should have appeared in Town and Country. In a special Sunday section, Habitats, an article by Celia Barbour appeared about Bronxville, NY. Entitled "A Place to Get Better and Thrive", the article was as thoughtless as it was vacuous--a life styles of the rich and famous about a wealthy man, Francesco Clark who has been a quadriplegic for six years.
By the second paragraph I knew the article would be dreadful. Mr. Clark is an ambassador for the Christopher Reeve foundation a sure sign that he is oblivious to the civil rights of disabled people. In the article readers are informed Mr. Clark was injured in a swimming accident six years ago and is a quadriplegic. Readers are told tidbits about Mr. Clark's life that include the fact he traveled to China for stem cell surgery, lives in an opulent home in Bronxville, and that two years ago he spent $35,000 converting the family garage into a gym. Mr. Clark is characterized as "well-to-do-enough to afford top-notch treatment" and that he learned Spanish to help him communicate with some of his caretakers. He also comes from a long line of doctors and inherited a creative outlook toward healing.
Obviously Mr. Clark is wealthy. I do not begrudge Mr. Clark his wealth but I sure do question his penchant for surrounding himself with others who share his outlook and interest in innovative treatments and clinical trials. These are the same buzz words and "interests" that Mr. Reeve used to distance himself from other disabled people who did not share the economic power these men clearly enjoy.
In sharp contrast to Mr. Clark, I am far more interested in the economic and social reality that most disabled people are forced to confront. Statistics demonstrate that the vast majority of paralyzed people in this country are unemployed, live at or below the poverty level, cannot afford substandard health care, and many quadriplegics such as Mr. Clark have no choice but to live in a nursing home. Few paralyzed people can afford to purchase state of the art exercise equipment and hire local trainers to work with them for hours on end. Mr. Clark exclaims that the result of his hard work has left "medical community dumbfounded by my progress" (similar claims were made by Mr. Reeve). Perhaps doctors would not be surprised by Mr. Clark's condition if they knew more about the grim social and economic conditions most paralyzed people deal with. I know not a single individual that can afford to live the life Mr. Clark leads.
It is obvious to me that Mr. Clark is using his wealth to insulate himself from other disabled people. In many ways I cannot blame him for who wants to deal with stigma, economic deprivation, and social isolation. Money can buy many things but it cannot purchase equality even for Mr. Clark. Ms. Barbour's article contains many unfortunate phrases such as "confined to a wheelchair" that demean not just Mr. Clark but all paralyzed people. Ms. Barbour is also blissfully unaware of the difference between a medical and social model of disability. She writes that doctors expected Mr. Clark to "accept his fate, curb his expectations, and get used to living on the margins". No such message is sent by the medical community. Based on my experiences as a paralyzed man for the last 30 years doctors are unaware of such social obstacles. The idea that disabled people have limited lives is a social norm enforced by ordinary citizens--your neighbors and mine. Disabled people are marginalized by a social system that denies them their humanity by placing needless obstacles in their way. Sure no one wakes up and thinks I am against the disabled--the social oppression is sanitized and rationalized in a myriad of ways that makes it palatable. Thus people are not bigots but rather fiscally responsible when they refuse to include expenses that provide equal transportation for disabled students in a given school system.
What I hope to see in the New York Times someday is an article about the social and economic variables that prevent equality for all that have some sort of physical deficit. I want to read an article about average people that do not live in Bronxville but rather in a nursing home because they cannot afford a personal attendant at home to assist them with routine aspects of daily life. This is a gripping story and a human rights violation that the New York Times chooses to overlook and conspicuously ignores. I guess fluff pieces like the one penned by Ms. Barbour sell papers.
By the second paragraph I knew the article would be dreadful. Mr. Clark is an ambassador for the Christopher Reeve foundation a sure sign that he is oblivious to the civil rights of disabled people. In the article readers are informed Mr. Clark was injured in a swimming accident six years ago and is a quadriplegic. Readers are told tidbits about Mr. Clark's life that include the fact he traveled to China for stem cell surgery, lives in an opulent home in Bronxville, and that two years ago he spent $35,000 converting the family garage into a gym. Mr. Clark is characterized as "well-to-do-enough to afford top-notch treatment" and that he learned Spanish to help him communicate with some of his caretakers. He also comes from a long line of doctors and inherited a creative outlook toward healing.
Obviously Mr. Clark is wealthy. I do not begrudge Mr. Clark his wealth but I sure do question his penchant for surrounding himself with others who share his outlook and interest in innovative treatments and clinical trials. These are the same buzz words and "interests" that Mr. Reeve used to distance himself from other disabled people who did not share the economic power these men clearly enjoy.
In sharp contrast to Mr. Clark, I am far more interested in the economic and social reality that most disabled people are forced to confront. Statistics demonstrate that the vast majority of paralyzed people in this country are unemployed, live at or below the poverty level, cannot afford substandard health care, and many quadriplegics such as Mr. Clark have no choice but to live in a nursing home. Few paralyzed people can afford to purchase state of the art exercise equipment and hire local trainers to work with them for hours on end. Mr. Clark exclaims that the result of his hard work has left "medical community dumbfounded by my progress" (similar claims were made by Mr. Reeve). Perhaps doctors would not be surprised by Mr. Clark's condition if they knew more about the grim social and economic conditions most paralyzed people deal with. I know not a single individual that can afford to live the life Mr. Clark leads.
It is obvious to me that Mr. Clark is using his wealth to insulate himself from other disabled people. In many ways I cannot blame him for who wants to deal with stigma, economic deprivation, and social isolation. Money can buy many things but it cannot purchase equality even for Mr. Clark. Ms. Barbour's article contains many unfortunate phrases such as "confined to a wheelchair" that demean not just Mr. Clark but all paralyzed people. Ms. Barbour is also blissfully unaware of the difference between a medical and social model of disability. She writes that doctors expected Mr. Clark to "accept his fate, curb his expectations, and get used to living on the margins". No such message is sent by the medical community. Based on my experiences as a paralyzed man for the last 30 years doctors are unaware of such social obstacles. The idea that disabled people have limited lives is a social norm enforced by ordinary citizens--your neighbors and mine. Disabled people are marginalized by a social system that denies them their humanity by placing needless obstacles in their way. Sure no one wakes up and thinks I am against the disabled--the social oppression is sanitized and rationalized in a myriad of ways that makes it palatable. Thus people are not bigots but rather fiscally responsible when they refuse to include expenses that provide equal transportation for disabled students in a given school system.
What I hope to see in the New York Times someday is an article about the social and economic variables that prevent equality for all that have some sort of physical deficit. I want to read an article about average people that do not live in Bronxville but rather in a nursing home because they cannot afford a personal attendant at home to assist them with routine aspects of daily life. This is a gripping story and a human rights violation that the New York Times chooses to overlook and conspicuously ignores. I guess fluff pieces like the one penned by Ms. Barbour sell papers.
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