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.
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.
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.