Here is one CNN report about Pistorius from You Tube. This news report is better than most I saw in that the focus is on his ability to run fast. Other television stories about Pistorius relied on dated and worn out cliches about overcoming disability and entirely missed the point--if Pistorius "overcame" anything it was social stigma and oppression.
Sunday, May 18, 2008
Pistorius Victorious
MSNBC, the New York Times, AP and other press outlets are reporting that Oscar Pistorius will be able to compete in the Olympics. Pistorius, an elite South African runner that uses two prostheses had previously been banned from competing in the Oympics earlier this year. The ban was imposed by the IAAF and based on the mistaken belief that Pistorius' prostheses gave him an unfair advantage against athletes who do not use protheses. Overturning the ban is a watershed event for elite disabled athletes world wide.
The decision that permit permits Pistorius to compete is limited but opens the door for other athletes with a disability. Future challenges are sure to come and the ruling sends an important message to elite disabled athletes: You can compete! You are equal! This is what I am choosing to focus on this morning and I have a broad grin spread across my face. If Pistorius can overcome all the time he lost fighting his ban, perhaps he can earn a sport on the South African Olympic team. This would not only be a victory for Pistorius but a symbolic moment for disabled people: equality at the highest level of competition exists. If Pistorius can do what no other amputee has done before in court and on the track than imagine what others can do with the same dedication. Oppression can indeed be surmounted and Pistorius is truly a trailblazer to be emulated.
For more on Pistorius please read a great new blog: An Impossibility in an Impossible Universe. Here is a link: http://impossibleuniverse.blogspot.com/ This blog by Sarah Heacox delves into adaptive sports and should readers have an interest it is a great site where one can access helpful information about sports such as skiing. I for one look forward to more posts on this blog.
The decision that permit permits Pistorius to compete is limited but opens the door for other athletes with a disability. Future challenges are sure to come and the ruling sends an important message to elite disabled athletes: You can compete! You are equal! This is what I am choosing to focus on this morning and I have a broad grin spread across my face. If Pistorius can overcome all the time he lost fighting his ban, perhaps he can earn a sport on the South African Olympic team. This would not only be a victory for Pistorius but a symbolic moment for disabled people: equality at the highest level of competition exists. If Pistorius can do what no other amputee has done before in court and on the track than imagine what others can do with the same dedication. Oppression can indeed be surmounted and Pistorius is truly a trailblazer to be emulated.
For more on Pistorius please read a great new blog: An Impossibility in an Impossible Universe. Here is a link: http://impossibleuniverse.blogspot.com/ This blog by Sarah Heacox delves into adaptive sports and should readers have an interest it is a great site where one can access helpful information about sports such as skiing. I for one look forward to more posts on this blog.
Wednesday, May 14, 2008
The NY Times Gets it
Today the NY Times got a disability story right. In "For Disabled, Age 18 Brings Difficult Choices" Marc Santora wrote about the profound problems disabled people encounter when they age out of the system and become adults at 18. For 500,000 young adults with serious disabilities the options they have are limited at best. Many labeled "medically fragile" end up in nursing homes and a their life is profoundly compromised. For instance, two young disabled people featured in the story are currently living in a 700 bed institution for the elderly. The executive officer acknowledged that it was impossible to "create a milieu that is best for them".
The problems and options 18 year old disabled people have are severely limited--a fact highlighted in the article. This issue is not new to disability rights activists such as ADAPT and disability rights publications like Mouth. What is new is the number of young disabled people in this unenviable situation is growing. In spite of the actions of disability rights activists the fact is doctors, parents, and hospital administrators do not know what to do and up to 70% of young disabled adults can end up in a nursing home. The ignorance involved in deciding what to do highlights the divide between disability activists and the public at large leading the one doctor to state "It's something totally new, so part of it is just educating people about the situation". I could not agree more that further education is needed as is new legislation. Legislation and viable options beyond life in a nursing home are a must. But what sort of education and options will people be exposed to? The nursing home industry is powerful and well connected while disability rights groups despite a major commitment are virtually invisible. I wish I had a solution to the issues involved and my heart goes out to parents and disabled adults who are in an impossible situation that need not exist. What I can do is continue my support of disability rights groups like ADAPT and try to educate the public via this blog and my academic writing. This seems like a paltry contribution when I know other disabled people have a life that is compromised for truly bad reasons.
The problems and options 18 year old disabled people have are severely limited--a fact highlighted in the article. This issue is not new to disability rights activists such as ADAPT and disability rights publications like Mouth. What is new is the number of young disabled people in this unenviable situation is growing. In spite of the actions of disability rights activists the fact is doctors, parents, and hospital administrators do not know what to do and up to 70% of young disabled adults can end up in a nursing home. The ignorance involved in deciding what to do highlights the divide between disability activists and the public at large leading the one doctor to state "It's something totally new, so part of it is just educating people about the situation". I could not agree more that further education is needed as is new legislation. Legislation and viable options beyond life in a nursing home are a must. But what sort of education and options will people be exposed to? The nursing home industry is powerful and well connected while disability rights groups despite a major commitment are virtually invisible. I wish I had a solution to the issues involved and my heart goes out to parents and disabled adults who are in an impossible situation that need not exist. What I can do is continue my support of disability rights groups like ADAPT and try to educate the public via this blog and my academic writing. This seems like a paltry contribution when I know other disabled people have a life that is compromised for truly bad reasons.
Monday, May 12, 2008
Disability and Language
Yesterday a long article appeared in the New York Times entitled "Taking a Chance on a Second Child". The article was written by Michael Winerip, a Pulitzer Prize wining writer. Mr. Winerip is a seasoned reporter, graduate of Harvard University and a gifted writer. Yet a day later I remain stunned and outraged by the language Winerip used. The article in question is about Jordana Holovach, her son Jacob who is severely disabled, and her decision to have a second "healthy" child.
The tone of Winerip's article is shocking. Each and every mention of disability is overwhelmingly negative. The language is antiquated, insulting, and devalues the life of a child and by extension all disabled children and adults. Among the snippets I found particularly appalling include the following:
In referring to Ms. Holovach's son: "And as much as she loves that boy and as hard as she's worked to make him whole...she felt snake bit"
Ms. Holovach's son is "confined to a wheelchair".
Ms. Holovach's son was responsible for her divorce: "Her first marriage ended in divorce under the strain" and "Jacob was a big reason".
Before Ms. Holovach's son was born "they were successful people" (note tense).
Ms. Holovach's second husband believes siblings of disabled people "felt burdened and cheated by having to care for a disabled sibling".
Other parents of children with a similar disability "let the child die quietly at home" or were "institutionalized".
Ms. Holovach's son represents "the curse and blessing of modern medicine".
Subtlety is absent as is any respect for the life of Ms. Holovach's son. Winerip describes the child as "not whole" and "confined to a wheelchair". He is also a "burden to his sibling" and responsible for the divorce of his parents. Until his birth, his parents "were successful people" meaning his birth was a failure and represented the "curse" modern medicine. If the parents had any sense they would send him to an institution or "let the child die quietly at home".
I am not parsing words nor am I taking quotes out context. The tortured language Winerip utilizes to describe disability is about as subtle as a burning cross erected outside the house of a black family. Disabled people are a burden at best. The lives of disabled people has no value when compared to "healthy people". In spite of these damning words Ms. Holovach has "made peace with Jacob as he is". Here is where I am stuck--why is the existence of disabled people such an affront to those who do not have a disability? What is so horrific about using a wheelchair? Why are disabled children segregated from their non disabled peers?
For readers of the New York Times and Winerip in particular let me clue you in on a few facts. My life has value as does the life of every disabled person in this country. Many of us are sentient and some people such as myself get angry when demeaned. The problem disabled people are forced to overcome has little to do with a cognitive or physical disability but rather social bigotry and ignorance. Disability is a social problem first and a logistical problem second. Logistical problems such as architectural barriers and inaccessible mass transportation systems would not exist if there was a social demand for the inclusion of disabled people. Instead, we get articles such as the one written by Winerip that perceive disability as some sort of perverse failure.
The New York Times routinely casts disability in a negative fashion (though I will acknowledge a small number of good articles are published). What I do not understand is why, that is why does the NY Times refuse to acknowledge what the vast majority of disabled people already know: disability rights are civil rights. If you do not believe me look it up--it has been the law for the last seventeen years. Yes, the Americans with Disability Act is indeed civil rights legislation in spite of the fact the Supreme Court has spent the last decade gutting into oblivion.
The tone of Winerip's article is shocking. Each and every mention of disability is overwhelmingly negative. The language is antiquated, insulting, and devalues the life of a child and by extension all disabled children and adults. Among the snippets I found particularly appalling include the following:
In referring to Ms. Holovach's son: "And as much as she loves that boy and as hard as she's worked to make him whole...she felt snake bit"
Ms. Holovach's son is "confined to a wheelchair".
Ms. Holovach's son was responsible for her divorce: "Her first marriage ended in divorce under the strain" and "Jacob was a big reason".
Before Ms. Holovach's son was born "they were successful people" (note tense).
Ms. Holovach's second husband believes siblings of disabled people "felt burdened and cheated by having to care for a disabled sibling".
Other parents of children with a similar disability "let the child die quietly at home" or were "institutionalized".
Ms. Holovach's son represents "the curse and blessing of modern medicine".
Subtlety is absent as is any respect for the life of Ms. Holovach's son. Winerip describes the child as "not whole" and "confined to a wheelchair". He is also a "burden to his sibling" and responsible for the divorce of his parents. Until his birth, his parents "were successful people" meaning his birth was a failure and represented the "curse" modern medicine. If the parents had any sense they would send him to an institution or "let the child die quietly at home".
I am not parsing words nor am I taking quotes out context. The tortured language Winerip utilizes to describe disability is about as subtle as a burning cross erected outside the house of a black family. Disabled people are a burden at best. The lives of disabled people has no value when compared to "healthy people". In spite of these damning words Ms. Holovach has "made peace with Jacob as he is". Here is where I am stuck--why is the existence of disabled people such an affront to those who do not have a disability? What is so horrific about using a wheelchair? Why are disabled children segregated from their non disabled peers?
For readers of the New York Times and Winerip in particular let me clue you in on a few facts. My life has value as does the life of every disabled person in this country. Many of us are sentient and some people such as myself get angry when demeaned. The problem disabled people are forced to overcome has little to do with a cognitive or physical disability but rather social bigotry and ignorance. Disability is a social problem first and a logistical problem second. Logistical problems such as architectural barriers and inaccessible mass transportation systems would not exist if there was a social demand for the inclusion of disabled people. Instead, we get articles such as the one written by Winerip that perceive disability as some sort of perverse failure.
The New York Times routinely casts disability in a negative fashion (though I will acknowledge a small number of good articles are published). What I do not understand is why, that is why does the NY Times refuse to acknowledge what the vast majority of disabled people already know: disability rights are civil rights. If you do not believe me look it up--it has been the law for the last seventeen years. Yes, the Americans with Disability Act is indeed civil rights legislation in spite of the fact the Supreme Court has spent the last decade gutting into oblivion.
Wednesday, May 7, 2008
Placing Value on Human Life
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.
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.
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.
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