I am sure most people interested in disability rights have heard and read about Michael Garcia. Garcia is a waiter in Houston who has been hailed a hero or champion of disability rights. Garcia was serving a family of regular customers who had a child with Down Syndrome. According to Garcia a group of people at a nearby table were disturbed by the presence of a child with Down Syndrome. They requested to be moved to different table. Garcia overheard someone at this table state "Special needs children need to be special somewhere else". Offended, Garcia refused to serve these customers. All the major news outlets have published feel good stories about Garcia. There is no doubt Garcia and any other person that stands up against to such blatant disability based discrimination should be lauded. Garcia risked his job and he has been widely praised on his Facebook page and the restaurant website.
The Garcia story is heart warming yet I cannot help but feel story after story missed the most important point: disability based prejudice is an every day experience. Only one story I read about Garcia has attempted to explain why the incident in question is unusual: See George Estreich "A Child with Down Syndrome Keeps His Place at the Table" (http://www.nytimes.com/2013/01/26/opinion/a-child-with-down-syndrome-keeps-his-place-at-the-table.html?_r=0 One does not even need to read the op-ed link. The title tells it all. The fight for inclusion of the most mundane sort for people who have a disability, eating out at a restaurant, is not easy and can often turn into a battle. As Estreich points out, disability rights is a work in progress. There is no doubt disability based bigotry is less common. That is the sort of disability based discrimination I faced circa 1980 would be frowned upon. Large institutions such as Willowbrook State are closed. Progress has undoubtedly been made. However there is a long way to go. The greatest successes in terms of disability rights have been made in the law. The last forty years have witnessed law after law that seeks to empower people with a disability. The problem as I see and experience it is that the laws that protect my rights and the rights of people with a disability are ignored and lack value. Without a social mandate for disability rights all the laws in the world cannot protect my civil rights. Violations are the norm. As Estreich pointed out, there are no more Willowbrooks but are group homes an ideal environment for adults with cognitive and physical disabilities. The New York Times published a scathing series of articles about abuse in group homes. One has to wonder are group homes simply small institutions. The point here is not to question whether group homes are the ideal but rather suggest disability rights is complex with a unique history that is not taught in our secondary schools or university system. The result is the average person does not equate disability rights as civil rights. As I have stated many times, disability rights and civil rights are one in the same.
I have thought about the Garcia story a lot in the last few days. I had a close friend visit me this week. He is a noted poet and scholar. He also happens to be blind and has a great guide dog. We decided to go out to dinner with two other people who are also blind and have guide dogs as well. The best night to eat out was Friday. My first thought was not where to eat but rather eating out on a Friday night is a bad idea. Three people, three guide dogs and my wheelchair take up a lot of space. Extended discussions ensued most of which revolved around determining where we would encounter the least resistance to our presence. There is no doubt in mind the mental logistics we went through were unique. No bipedal person with sight would have been forced to make the same social calculations we made. Estreich is correct in a very real and tangible way that we people with a disability have to fight for out place at the metaphorical table. I wish I could state our dinner went smoothly. Our meal was great, service good but our departure was an adventure. For my friend's take on this see the follwing link: http://www.planet-of-the-blind.com/2013/01/hey-you-yeah-you-driving-the-lexus.html
Mass Transportation NYC Style
Monday, January 21, 2013
I love to travel despite the fact I routinely encounter trouble accessing mass transportation systems. As I have detailed in many posts the airline industry is inherently hostile to any person with a disability. Trains are hit and miss at best. Buses are the most reliable form of mass transportation in my experience. Access issues vary widely from one city to another. San Francisco, Portland, and Seattle are relatively easy to navigate. At the opposite end of the spectrum is New York City. Aside from MTA buses the train and subway are difficult and time consuming to use. Forget about taxis. Mayor Bloomberg has made it crystal clear the city has no interest in making taxis accessible. While MTA buses are reliable they are slow. The most efficient way to get around New York City is the subway system. Good luck with that! I try to use the subway at least a few times a year. Rarely have I been successful. Few stops are accessible and even if an elevator is present at a renovated stop they are usually not operational.
None of the above is news to a person that uses a wheelchair in NYC. I mention because the New York Times published a good article and video about navigating the city. See http://www.nytimes.com/2013/01/17/opinion/the-long-wait.html Jason Dasilva breaks no new ground here. Two decades after the ADA was passed accessing mass transportation in the city is a challenge. Dasilva, an independent film maker, lives in Williamsburg Brooklyn. In a short Op-ed film Dasilva leaves his home for the Union Square area in Manhattan, a typical trip for a resident. Dasilva's journey though is not simple or efficient. It takes him nearly 90 minutes to make a one way trip. Dasilva's friend made the same journey in less than 15 minutes.
It is films like Dasilva's and my own experience navigating mass transportation systems nationwide that make me aware of the fact I am disabled. It is not my disability that is the problem but the refusal of mass transportation systems to accommodate a wide range of disabling conditions. At no point in my life am I as aware of social barriers than when I access mass transportation. Elevators are routinely broken or simply non operational for unknown reasons. Employees are often rude and dismissive. Virtually no one has a clue about how to navigate a terminal or can locate accessible routes. Even when present accessible routes are convoluted. Curb cuts in one place handicapped parking in another. The net result of decades of hassles is that I am convinced we as a culture do not value access. I have felt and continue to feel as though I am on my own. My fellow passengers are never supportive. Employees of mass transportation systems are not pleasant. Nasty employees are hardly uncommon. Ignorance abounds. This is not just a "long wait" as the NY Times article is entitled. The issue is needless barriers are created and supported by a social system that does not value my presence.
None of the above is news to a person that uses a wheelchair in NYC. I mention because the New York Times published a good article and video about navigating the city. See http://www.nytimes.com/2013/01/17/opinion/the-long-wait.html Jason Dasilva breaks no new ground here. Two decades after the ADA was passed accessing mass transportation in the city is a challenge. Dasilva, an independent film maker, lives in Williamsburg Brooklyn. In a short Op-ed film Dasilva leaves his home for the Union Square area in Manhattan, a typical trip for a resident. Dasilva's journey though is not simple or efficient. It takes him nearly 90 minutes to make a one way trip. Dasilva's friend made the same journey in less than 15 minutes.
It is films like Dasilva's and my own experience navigating mass transportation systems nationwide that make me aware of the fact I am disabled. It is not my disability that is the problem but the refusal of mass transportation systems to accommodate a wide range of disabling conditions. At no point in my life am I as aware of social barriers than when I access mass transportation. Elevators are routinely broken or simply non operational for unknown reasons. Employees are often rude and dismissive. Virtually no one has a clue about how to navigate a terminal or can locate accessible routes. Even when present accessible routes are convoluted. Curb cuts in one place handicapped parking in another. The net result of decades of hassles is that I am convinced we as a culture do not value access. I have felt and continue to feel as though I am on my own. My fellow passengers are never supportive. Employees of mass transportation systems are not pleasant. Nasty employees are hardly uncommon. Ignorance abounds. This is not just a "long wait" as the NY Times article is entitled. The issue is needless barriers are created and supported by a social system that does not value my presence.
Belgian Suicide: Marc and Eddy Verbessem
Saturday, January 19, 2013
Stephen Drake at Not Dead Yet has published two blog posts about the suicide of Marc and Eddy Verbessem. Assisted suicide has been legal in Belgium since 2002. The Belgium Act on Euthanasia as I understand it requires a person seeking assisted suicide must be in a "medically futile condition of constant and unbearable physical or mental suffering that cannot be alleviated, resulting from an incurable disorder caused by illness or accident". As Drake has pointed out, media reports are hardly comprehensive and the exact circumstances of the assisted suicide has not yet been made clear. I doubt the Verbessem brothers qualified for assisted suicide. While many interested in this unusual case will focus on the legal implications, I am far more interested in the cultural ramifications. The implied message the Verbessem assisted suicide is not hard to assess: death is preferable to life as a blind deaf person. This line of logic is not uncommon when disability of any sort enters the equation. Long ago it was widely accepted that a person that experienced a cervical spinal cord injury could not have an acceptable quality of life. This as most readers would agree is simply wrong. The same can be said of the decision that led to the suicide of the Verbessem's. The National Federation of the Blind President, Dr. Marc Maurer released the following power statement:
This disturbing news from Belgium is a stark example of the common, and in this case tragic, misunderstanding of disability and its consequences. Adjustment to any disability is difficult, and deaf-blind people face their own particular challenges, but from at least the time of Helen Keller it has been known that these challenges can be met, and the technology and services available today have vastly improved prospects for the deaf-blind and others with disabilities. That these men wanted to die is tragic; that the state sanctioned and aided their suicide is frightening.
Frightening is apt. The Verbessem's were not unique. Many people who are blind and deaf live long productive lives. The only thing that makes the Verbessem's unusual or unique, is the way they died. Many news reports I read used the word "mercy" to describe the assisted suicide. Based on comments I read that accompanied news stories, many will perceive this to be a perfect example of a mercy killing. Hundreds of stories have been published in the last few days. Not a single story I could find included a quote from a person that is blind and deaf. Not one. To me this is a perfect example of disenfranchisement. It also illustrates how badly disability is understood. This is hardly a new phenomenon. Children are taught about Helen Keller. The film the Miracle Worker is considered a classic. Most know about Keller's supposed heroic ability to adapt to her disability. Precious few people know Hellen Keller was an ardent socialist. She wrote:
I had once believed that we are all masters of our fate - that we could mould our lives into any form we pleased... But as I went more and more about the country I learned that I had spoken with assurance on a subject I knew little about. I forgot that I owed my success partly to the advantages of my birth and environment. Now, however, I learned that the power to rise in the world is not within the reach of everyone.
Keller is spot on about power or the lack of power. The wider lesson associated with the Verbessem assisted suicide is we live in a society that dis-empowers people with a disability. We are too often set up to fail because adequate social supports are absent. Couple this with rampant disability based discrimination and the consequences can be deadly, particularly in a county such as Belgium that enthusiastically embraces assisted suicide. Perhaps this case is a harbinger of the future in the United States if assisted suicide is widely accepted. A grim thought.
This disturbing news from Belgium is a stark example of the common, and in this case tragic, misunderstanding of disability and its consequences. Adjustment to any disability is difficult, and deaf-blind people face their own particular challenges, but from at least the time of Helen Keller it has been known that these challenges can be met, and the technology and services available today have vastly improved prospects for the deaf-blind and others with disabilities. That these men wanted to die is tragic; that the state sanctioned and aided their suicide is frightening.
Frightening is apt. The Verbessem's were not unique. Many people who are blind and deaf live long productive lives. The only thing that makes the Verbessem's unusual or unique, is the way they died. Many news reports I read used the word "mercy" to describe the assisted suicide. Based on comments I read that accompanied news stories, many will perceive this to be a perfect example of a mercy killing. Hundreds of stories have been published in the last few days. Not a single story I could find included a quote from a person that is blind and deaf. Not one. To me this is a perfect example of disenfranchisement. It also illustrates how badly disability is understood. This is hardly a new phenomenon. Children are taught about Helen Keller. The film the Miracle Worker is considered a classic. Most know about Keller's supposed heroic ability to adapt to her disability. Precious few people know Hellen Keller was an ardent socialist. She wrote:
I had once believed that we are all masters of our fate - that we could mould our lives into any form we pleased... But as I went more and more about the country I learned that I had spoken with assurance on a subject I knew little about. I forgot that I owed my success partly to the advantages of my birth and environment. Now, however, I learned that the power to rise in the world is not within the reach of everyone.
Keller is spot on about power or the lack of power. The wider lesson associated with the Verbessem assisted suicide is we live in a society that dis-empowers people with a disability. We are too often set up to fail because adequate social supports are absent. Couple this with rampant disability based discrimination and the consequences can be deadly, particularly in a county such as Belgium that enthusiastically embraces assisted suicide. Perhaps this case is a harbinger of the future in the United States if assisted suicide is widely accepted. A grim thought.
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