I do not want to die. This sentiment hardly makes me unusual. What does make me different is I have a legitimate worry. I worry someone will decide to kill me. I do not think someone will kill me maliciously, for spite, or hate. I worry someone will kill me with kindness in their heart. I am not paranoid. I know more than a few other people with a disability that have the same worry. Like it or not, people with a disability are not valued. Our lives are deemed tragic. Social expectations are limited at best. No one expects us to have a job, be a parent, or live a vibrant life. No, our role is to get well. For me, that means I should spend all my time thinking about walking. I should go from doctor to doctor to make this happen, subject myself to experimental stem cell treatment. If I did this I would be lauded as courageous. I consider efforts for cure to spinal cord injury an abject waste of my time. I can happily leave that quest to medical researchers. Instead, I rail against social prejudice and the stigma that clings to disability 20 years after the ADA supposedly made me equal to my bipedal peers. Of one thing I am sure, in daily life and in particular a hospital setting I am very far from equal.
I have been preoccupied with end of life issues since I read an article by Neil Shapiro in the Monterey Herald entitled “Right to Die Gives Dignity to the Disabled” (3/21/11). What strikes me as remarkable is the universal social support people with disabilities receive if they express a desire to die. Why is help to die given so willingly when social supports that are needed to live a full and equal life with a disability despised. Do not doubt me on this. Think for yourself. Read about draconian budget cuts sweeping the nation that adversely affects people with disabilities. Better yet talk to a parent of a child with a severe disability. They can regale you with horror stories about how they have to fight tooth and nail for the most basic support. Talk to a person with a disability who has no job or health insurance and as a result cannot afford a good wheelchair or cushion to prevent a pressure sore from developing.
Many disability studies scholars have explained why people with a disability are not valued. They argue knowledge is socially situated and has inherent logic to its members. Identities are socially constructed and fit into the aforementioned socially constructed knowledge. Certain bodies, disabled bodies (my body) are excluded from dominant social ideologies. The disabled body is inherently flawed. The person with a disability must be in pain, physical or mental. The person with a disability must be unhappy with his or her flawed body. The person with a disability has thus lost their dignity. The person with a disability has lost control and independence. This, for Americans, is a fate worse than death. So it makes sense to put the poor bastards out of their misery? Ah, no it does not. What the above reasoning utterly fails to consider is why. Why are people with disabilities shut off from routine social interaction? Instead of addressing this vexing question we have people like Neil Shapiro who out of the kindness of his hearts wants to help people with a disability die. He also thinks Dr. Kevorkian was a “quirky Michigan doctor”. Shapiro wrote:
“It seems to me that the right to decide that one has suffered enough, that whatever joy remains in life is outweighed by that suffering and that it is time to die, is one of the most fundamental of human and civil rights. Why should one's neighbors be able to dictate that one should not be able to terminate one's unbearable pain? But unless we follow Oregon and Washington, we may never have this right.
There is a great irony in all of this. Those who are not incapacitated are physically able to commit suicide, and need no assistance. Those who require, but are routinely denied, that assistance are the disabled. We spend billions of dollars making sure that they have the same right as the rest of us to shop, visit the beach and the like, but we deny them the right to die with dignity. Go figure.”
Where do I begin? If it were up to my neighbors as Shapiro puts it, I would have been denied an education. I would not be able to get on a bus or plane. I would not have a job or be father. We people with a disability had to fight for these fundamental rights. Even though we people with a disability are supposedly equal I have never felt that way—ever. The idea of equality for people with a disability is illusive at best. As for the billions of dollars spent on access, which Shapiro seems to resent, has saved countless lives, mine included. But just because we spend money on access and inclusion does not mean we value the people who are supposedly equal and included. When it comes to disability rights, as a society we merely pay lip service to these inherent civil rights most take for granted. We do not in reality accept the presence of people with a disability. If we did I would not be forced to enter the back of so many buildings or have to call ahead to ask about access on a regular basis. Simply put, the disabled body remains unwanted and is perceived as defective. Worse yet, the disabled body is costly. Hospitals remain grossly inaccessible. Efforts to be inclusive are often ignored or belittled. The message society sends is not subtle. There is a word that comes to mind—oppression. Add in an illness, social isolation, dependence upon others and the logical leap to thinking my life is not worth living is dangerously short. Thus it is ever so easy to write one wants to control the way we die and the circumstances surrounding death. This desire is understandable but in my estimation dangerous for people with a disability. We need to take a much closer examination of the pros and cons to assisted suicide. When we do sentiments such as those expressed by Shapiro will be deemed not only dangerous but simply wrong.
