I doubt many readers in the United States know who Noel Martin is. Until this week, I had not thought about Mr. Martin in a long time. I recall reading his autobiography, Call it My Life, and found it deeply depressing. Martin became well-known in 1996 when he was paralyzed by Neo-Nazis. At the time he was paralyzed Martin was construction worker and his book was memorable to me for two reasons: first, he wrote with passion about racism and the prejudice black and disabled people encounter. Second, Martin's view of life post disability was morbidly depressing and he wrote that he would commit suicide. Martin is back in the news thanks to a BBC Radio interview conducted by Liz Carr and an "Open Letter" Carr wrote entitled "Dear Noel, is life really not worth living?"
Martin is if anything consistent about one thing: he thinks life as a disabled person is not worth living. He is clearly miserable and has maintained for sometime that he wants to commit suicide at Dignitas, the same Swiss "clinic" where Daniel James died. I consider Martin's firm belief that life with a disability is not worth living to be the most dangerous stereotype people with a disability must reject. Polls conducted in the United States and Europe consistently reveal that when asked if life with a severe disability is worth living the overwhelming number of people respond with a resounding no. In fact, polls consistently show fear of disability is the primary concern about aging and that most would prefer to die prematurely than age into life with a disability. Passages in Martin's book and interview with Carr on the BBC reflect this belief. Martin is adamant that he is not living but rather merely existing. He bemoans the fact he cannot feel anything (Martin is a quadriplegic) and can only watch the world go by. In his autobiography he provides readers with the graphic details of what his life is like and as most paralyzed people can confirm, myself included, the details are not not pretty. Martin maintains that assisted suicide clinics such as Dignitas are doing paralyzed people a favor. Martin notes that 70% of people in Britain would prefer to die than live life as a quadriplegic. Given his physical limitations and dependence upon others, Martin thinks the laws against assisted suicide that force people to sneak out of the country to die make no sense. Martin's views are well within the norm, a norm that is becoming increasingly common. I have no doubt the belief that death is preferable to life with a disability will become more entrenched as demographics reveal a rapidly aging population exists in Britain and the United States.
The real impediments to leading a rich and full life for disabled people is displaced by a focus on mundane or routine bodily functions. How do you get dressed, urinate, have sex, cook, clean, brush your teeth, wash your hair, put on a jacket, drive a car or get a job when you cannot walk? Each and every one of these concerns and many others have a standard set of solutions. The real problem disabled people encounter is as simple as it is obvious: their lives are not valued. Martin knows this as do many people with a disability. Martin has elected to accept this social reality, a concession that is as deadly as it is dangerous. The social failure to value the life of disabled people is reflected by substandard care and a system that grinds down and crushes the dreams and ambitions of countless disabled people past and present. Society does not want to question why Martin has a huge pressure sore and has not left his bed in months. Society does not want to know why an electric wheelchair costs as much as a used car. Society does not want to know why 70% of disabled people are unemployed. Society does not want to know why mass transportation systems are difficult or impossible to access. Society does not want to know why disabled people are so seldom seen at sporting events. Society does not want to know why children with disabilities are sent to "special schools". Society does not want to know why quadriplegics often end up in a nursing home.
Instead of solutions to the above issues society applauds people like Daniel James, James' parents, and Martin that want to die. Killing disabled people and accepting the fact their lives are not worth living is a simple solution to a problem that need not exist. Disabled people are thus forced into a bizarre situation-defending their right to exist. At issue is not equal rights but life itself. This is why Martin's desire to die and James suicide are worrisome. In Carr's interview with Martin she argues that life with a disability is worth living and in her open letter to him she wrote that one of the "main problems I have with assisted suicide stories like yours is that the media perpetuates the idea that to be disabled or ill must be the greatest tragedy of all. Disability inevitably equals no quality of life. I know when people read your story, many will agree that yes, if they were in your situation then they would want to die too. Most people are so scared of illness, of disability, of getting older, that wanting assisted suicide is seen as an entirely rational desire. What scares me is that views like these will also be held by the doctors, the media, the courts, the government and all others who have the power to decide if we live or die".
Carr, Martin, myself and disabled people have much to fear. This fear is very real, as real as the fear of disability itself. The accepted stereotype that life with a disability is not worth living is dangerous. This why I am reticent to complain about any physical or psychological concern I may have about my body and mind. If I seek medical treatment will the doctor, nurse, or hospital administrator consider my life not worth living and my existence an overwhelming burden on an already over taxed health care system. If I am depressed, will a psychiatrist consider depression a normal reaction to disability and not prescribe medication. My concerns are not limited to a medical setting. Is the service I receive at a store substandard because my presence is thought to hurt the business' image. Are airline services substandard for disabled people because it is assumed we cannot work and our time is not valuable? Do my neighbors resent me because the presence of a disabled person or group home decreases the value of their homes? I sincerely doubt those that walk think about these questions. Instead, when they see a person with an obvious disability they think "poor bastard his life must not be worth living". This is a dangerous thought process and unlike my bipedal peers I wonder how many people are now living in a nursing home or worse dead because of it. Sobering thoughts at a time when the economy and major corporations are in great distress.
4 comments:
William, with each sentence here, you open up and reveal truth after truth.
I wonder if part of Martin's struggle is about his experience of being victimized by Neo-Nazis, and how he's faced with the result of that action every single day, rather than his disability being caused by accident or illness. He is injured by people who tell him that he should not live, and afterwards, he gets the message he should not live because of his disability too.
I am lucky, very lucky, to have my own transportation and equipment and help from within my family. But it's still extraordinarily difficult--and I can walk around the house and have far less mobility poblems than others.
People are very surprised by the cost of wheelchairs, scooters, lifts, vans, and other equipment. People joke with me about the freebies I get as a disabled person, and while I can appreciate some humor, their use of it indicates to me what a lack of understanding people have of all the impediments there still are. I found myself wondering recently whether a particular venue was accessible, and someone told me of course it would be, it's the law. Now having experienced plenty of such places that aren't accessible, I have to roll my eyes--especially since her husband works in rehab with paralyzed people, amputees, etc!!
I find the most depressing part to be people's reactions to me. That's the problem, not my inherent worth. That's what makes me shut down and feel not worth it.
With doctors and psychologists, it probably depends on the individual. I found changing doctors helped, and there are counselors/psychologists who specialize in health care/chronic illness support.
I do appreciate your honesty in this regad. If we complain, does it seem that we just fit the stereotypes of grumpy disabled people (overlooking the fact that there are problems that need complaint or change)? Or do people see it as meaning it's not worth living, though people can struggle through similarly difficult life changes that aren't disability related without such judgment?
Thanks for the kind words and extended reply. The manner in which Martin became disabled was a subject of discussion between Liz Carr, herself disabled, and Martin. Another variable in this regard is that Martin's name is despised by Neo Nazis and he is subjected to their hateful comments.
Like you, I am fortunate to have the support of my family. Without this support I would be in trouble financially and personally. As you point out the cost of life with a disability is daunting. This dirty little secret is largely unknown. People just don't think that every car I buy is going to cost $1,000 more because I need hand controls. People wonder why I love to ski but do not own a monoski. Well, monoskis cost well in excess of $3,000 while a regular set of skis, boots and binding are substantially less.
As for the assumption that all venues are accessible, every disabled person I know assumes problems with access exist. The lack of access is the norm and has not been legislated out of existence. This is another thing people--even MDs and therapists--do not realize.
I agree people's reaction to the presence of a disabled person is rarely positive. This is indeed depressing. It is also why some disabled people do not leave their homes and are virtual shut ins. God forbid disabled people complain about anything. When we do we are considered "difficult" or having a "chip on your shoulder". What is ignored is the reason for complaint as our civil rights are deemed different and not valued. When dealing with the medical establishment I have learned to keep my mouth shut. Whiners get ignored and are stigmatized. When disability is thrown into the mix the results can be deadly as disabled lives are perceived to be inherently inferior. Disabled people that have the nerve to complain are quickly silenced with chemical restraints (drugs) or a psychiatric consultation.
You should write a book on this William, or I should--someone! Both on the lack of accessibility and the social issues. There needs to be more awareness outside the disability community, some kind of seachange that gives people an epiphany about the civil rights issues. I know people learn just from hanging around with me some, but it's not enough. Even in my limited capacity to do much work I want to do more, far far more and to target my efforts to make the most difference.
I didn't know this about psychiatric, well, abuse, but I bet that does happen. We're seen as the problem rather than the system as the problem.
Frida, I am working on a book under the title Bad Cripple. I hope it will be in print soon. As you know, there is a large literature on disability from a social or cultural perspective. There are also a growing number of scholars that specialize in disability studies. The problem is that no one has written a book that has resonated with the general public. Scholarly works are too academic for a general audience and books intended for a wide readership lack rigor and insight. I hope my book will appeal to all readers.
Like you, I do all I can to make a difference on a individual or case by case basis but it seems inadequate at best. There is no need for the rampant discrimination that exists and ignorance is a poor excuse for why it is acceptable to discriminate against disabled people.
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