Yesterday, some of the comments in the diary called "This is my body" touched on the issue of assisted suicide. I commented there that this issue is one of grave concern in the disability community.
I understand the impulse to think of assisted suicide as part of a right to bodily privacy and bodily integrity. However, I want to offer some insight into why it can also be seen as a way to rid society of people whose bodies are not acceptable, or who are perceived as a burden.
In my comments yesterday, I said I would look for an article I had read that speaks to these issues. Here it is. The article was published in the West Sonoma County Gazette (California) in February, 2005. It was sent to me in an email, so I do not have a link. I have the author's permission to publish it in full.
While it specifically references a bill introduced in the California Assembly, it is equally applicable to the general discussion of assisted suicide, and the concerns that it raises. It also discusses the Clint Eastwood movie "Million Dollar Baby." Are people aware that Clint Eastwood was sued under the Americans with Disabilities Act for failing to ensure that his resort in Carmel was accessible to people with disabilities? He responded with great hostility, and has subsequently crusaded against disability rights. This is discussed in the article as well.
I hope people gain some insight from this as to why assisted suicide is a complicated issue. Again, I understand its resonance in terms of bodily autonomy. I want to share why it also should raise concerns about medical care and treatment of people who are different.
Why We Can't Support Assistive Suicide Legislation, by HolLynn D'Lil
Most members of the disability civil rights movement view with horror the "Death with Dignity" bill sponsored by California Assembly Member Patty Berg. As members of the minority most discriminated against in human history, we know truths that others should harken to. One is that no one can judge another's quality of life. Another is that traditional thinking devalues people with disabilities and is so insidiously prevalent that even members of the medical profession are affected in how they make decisions about the care a person with a disability should receive.
A survivor of a car accident that left me a paraplegic 37 and half years ago, I have been written off several times by the medical profession. After receiving neglectful care, a staph infection developed on my heel. The doctor drilled into the bone, proposing that the flesh would adhere better if he did so. The staph infection spread into the bone. When I was told my foot would have to be amputated, I looked aghast. The doctor said it shouldn't matter to me since I couldn't use it anyway.
Several months later, a doctor told me I would have to abort my baby as he hadn't reviewed my records when he had advised me it would be okay to get pregnant. The staph infection in my foot he explained would cause the baby to be brain damaged. I went looking for another opinion. The next doctor said I could have the baby which would have to be "farmed out" while my foot was operated on. (Farmed out? My baby? The man was insane.)
I went looking for another opinion. My foot was operated on. My baby was born - to a mother with two feet. Chelsea, my beautiful, amazing daughter lives in San Francisco today. She works with adults with developmental disabilities with such love, joy and respect that she brings tears to my eyes. She is my gift to the Universe.
Neglectful care and callousness on the part of the medical profession are only some of the reasons assistive suicide should not be legislated. Traditional attitudes toward people with disabilities foster negative attitudes about disability everywhere. I encounter pity every day, even though I have a perfectly lovely life. Do I want anyone in a superior or controlling position to counsel me about the quality of my life and the option I have to die?
No one can judge another's quality of life.
Furthermore, suicide is already a legal option. Marilyn Golden has written an analysis of the assisted suicide issue, available at http://dredf.org/assistedsuicide.html. As she points out, assisted suicide is already legal. "It is legal in every U.S. state for an individual to create an advance directive that requires the withdrawal of treatment under any conditions the person wishes. It is legal for a patient to refuse any treatment or to require any treatment to be withdrawn. It is legal to receive sufficient painkillers to be comfortable, even if they might hasten death. And if someone who is imminently dying is in significant discomfort, it is legal for the individual to be sedated to the point that the discomfort is relieved."
What is more, she points out, "If someone has a chronic illness that is not terminal, that individual is not eligible for assisted suicide under any proposal in the U.S., nor under the Oregon Death with Dignity Act (Oregon is the only state where assisted suicide is legal). Furthermore, any individual whose illness has brought about depression that affects the individual's judgment is also ineligible, according to every U.S. proposal as well as Oregon's law. Consequently, the number of people whose situations would actually be eligible for assisted suicide is extremely low."
So, why is there such a push for a law that is not necessary? A few horror stories drive good-hearted people to support such a bill. That's one view. Marilyn Golden points out another view that takes a long look at the relationship between profit-driven managed health care and assisted suicide. The incentive to save money by denying health care benefits and procedures already puts us at risk today. The "Death with Dignity" bill proposes to legislate an even greater means of protecting the managed health care profit base. Those who are economically disadvantaged are greatly at risk of being offered the limited choice between suicide and a limited life in an institution and poor care due to denial of benefits.
Ms. Golden's analysis reveals, "All but one of the people in Oregon who were reported to have used that state's assisted suicide law during its first year wanted suicide not because of pain, but for fear of losing functional ability, autonomy, or control of bodily functions (Oregon Health Division, 1999)." The reality is that a life with a disability is as subjective an experience as any life.
My life is so blessed as I sit here in my new office in my new home in Graton and look out at this beautiful winter day of sunshine in West Sonoma County, where the people are large-hearted, gracious and throw a potluck party at the drop of a hat. To make things even more perfect, my son just called, just to talk. (Trusten was diagnosed in the third grade with a learning disability and told he would never learn to read. Next May he graduates from law school in New York.) As we talked, he, as usual, revealed such emotional maturity that once again I learned something important from him. (My children have done a good job of raising me.) Yet, there are those who pity me.
What if I were newly disabled and hadn't yet learned of all the options I have for leading a fully realized life? What if I were still in the hospital and had just been told that I would never walk again? Never have control over my bodily functions again? What if they had offered me a lethal injection then?
The new movie, "Million Dollar Baby," extolls assisted suicide in just such a situation. The heroine is newly disabled and living without choices in a nursing home with such poor care that her leg has to be amputated. She has about the same disability as Christopher Reeve had, the man Hollywood loved and supported and put back to work. Now Hollywood is hyping Clint Eastwood's new movie about someone like Reeve, only without resources to move about and be self directing. With much well-lit angst, Clint Eastwood, the movie's director and star, demonstrates that suicide is the only solution.
There is no questioning of the nursing home that allows the heroine's limb to rot. There is no mention of providing mobility devices and attendant care so she can live her own life in her own home. No, the heroine is incarcerated and left to rot, literally, with suicide as her only way out.
Eastwood has demonstrated his bias against the disability community before. When he added guest rooms to his resort in Carmel, he did not make them accessible. He remodeled the restrooms for the restaurant on the site, without making them accessible. When forced, he built accessible restrooms across a parking lot so that patrons with disabilities had to go out in the weather to go to the restroom. He could have fixed all his access problems for about $40,000. Instead he spent more than $800,000 fighting the lawsuit for his noncompliance with the law. Then he went to Congress and campaigned to have our civil rights law, the Americans with Disabilities Act drastically weakened.
Mr. Eastwood's bias is obvious to anyone who knows his history. How many watching "Million Dollar Baby" would know that particularly dark side of the Hollywood hero? How many would ever question that the movie's heroine with the spinal cord injury would be better off dead? Unfortunately, few would, because fear and ignorance about disability shape the basic social view of disability.
Supposedly, there are safeguards in the "Death with Dignity" bill that would protect against the traditional biases against people with disabilities. However, they are simply not practical. Suicide is offered to anyone with six months to live. How does anyone know what will happen in six months? Are the doctors always right? What if the ones being offered suicide believe they are a burden on their family? What if the families believe they are too much of a burden? How easily "the right to die" can become "the duty to die."
Ms. Golden states, "The Netherlands has become a frightening laboratory experiment because assisted suicide and euthanasia have meant that "pressure for improved palliative care [wheelchairs, portable respirators, attendant care in the home, counseling, etc. etc. etc.] appears to have evaporated," according to Herbert Hendin, M.D., in his Congressional testimony in 1996. Hendin was one of only three foreign observers given the opportunity to study these medical practices in the Netherlands in depth, to discuss specific cases with leading practitioners, and to interview Dutch government-sponsored euthanasia researchers. He documented how assisted suicide and euthanasia have become not the rare exception, but the rule for people with terminal illness in the Netherlands."
I never thought I would live in a country that bombed first. But, here we are, and from that war, we are told little about how many soldiers have become disabled. (The Christian Science Monitor estimates eight soldiers a day are disabled.) Now, we are told we must destructure Social Security, the life net for people with disabilities, because the country, which was solvent before the war, can no longer afford Social Security. Futhermore, Hollywood has just awarded seven Oscar nominations to the movie "Million Dollar Baby" that justifies the suicide/murder of a person with a disability. In California, "Death with Dignity" legislation is being proposed to make it easier for people with disabilities to die than to live. Am I being paranoid to see a connection among these recent events?
Okay, say that I am being paranoid and there isn't an unconscious or conscious national agenda to get rid of people with disabilities. At the very least, can I gamble that my health care organization will never terminate me in order to save money? About twelve years ago, a friend visiting me in the hospital after I was newly diagnosed with cancer heard a doctor discussing my case in the elevator. "It's terminal, "he said, "but she's in a wheelchair anyway."