posted by Addie on .
Are there any rhetorical devices in this article?:
My name is Diane Coleman. I have a Juris Doctorate and Masters in Business Administration from the University of California at Los Angeles....
I am the Executive Director of Progress Center for Independent Living in Forest Park, Illinois, a nonprofit nonresidential service and advocacy center operated by and for people with disabilities.
I have had a neuromuscular disability since birth, and have used a motorized wheelchair since the age of eleven. From 1987 through 1995, I volunteered as a national organizer for ADAPT, also known as the American Disabled for Attendant Programs Today. I continue to advocate, speak and guest lecture on long-term care issues within Illinois.
When I was six years old, my doctor told my parents that I would not live past the age of 12. A few years later, the diagnosis changed and so did my life expectancy. Over time, I learned that respiratory issues would probably develop. I have friends who've used nighttime ventilators for years, so I knew what symptoms to watch for, and four years ago, started using a breathing machine at night. I had two other friends, one in her 30's and one in her 50's, who needed the same thing. But their doctors discouraged them from it, reinforcing their fears, and either didn't know or didn't disclose what the medical journals said would happen as a result. At an early age, they each went into respiratory distress, and died within a month from infections. A number of my other friends have been pressured by hospital employees to sign do-not-resuscitate orders and other advance directives to forego treatment, coupled with negative statements about how bad it would be if they became more disabled. Frankly, I'm becoming worried about what might happen to me in a hospital if I have a heart attack or other medical crisis. I have appointed my health care proxy, but will the decisions I have entrusted to him be followed by my health care providers? I am not at all convinced that decisions to live are any longer treated with the same respect by health care providers as decisions to die. In fact, I am sure they are not.
Not Dead Yet
Ten years ago, I was on my way to testify before the House Constitution Subcommittee about the opposition to legalized assisted suicide coming from national disability rights organizations. Many of us were worried about Jack Kevorkian, whose body count was 70% people with non-terminal disabilities, and we were worried about two Circuit Courts declaring assisted suicide a constitutional right. Kevorkian even had a legal defense fund provided by the Hemlock Society, later renamed "End-of-Life Choices" and now merged with "Compassion in Dying" to form "Compassion and Choices." In 1996, disability activists had begun to think that we needed a street action group like ADAPT to address the problem, and it was actually the head of ADAPT, Bob Kafka, who thought of our name, taken from a running gag in Monty Python and The Holy Grail, "Not Dead Yet." From our viewpoint, assisted suicide laws would create a dangerous double standard for society's response to suicidal expressions, an unequal response depending on one's health or disability status, with physicians as gatekeepers. That sounds like deadly discrimination to us and, frankly, we've been disappointed that the U.S. Dept. of Justice didn't use our civil rights law, the Americans with Disabilities Act, instead of the Controlled Substances Act, to challenge the Oregon assisted suicide law. Like other minority groups, we feel that discrimination is best addressed on the federal level, and states rights have too often meant states wrongs....
Disability rights groups have a unique perspective, informed by both our principles and our experiences. Our principles embrace non-discrimination, civil rights and self-determination. Our collective experiences include monumental struggles against the crushing oppression of a health care system that devalues us and a society that fears significant disability as a fate worse than death. We are consumers on the front lines of the health care system, facing your worst fears with grace and dignity, yet we have been pushed to the margins and even excluded outright from the debate on these issues....
The Real Reason People Ask for Assisted Suicide
Assisted suicide is supposedly about terminal illness, not disability, so many question the legitimacy of disability groups "meddling" and trying to "take away" what they see as the general public's right to choose assisted suicide, some say when they're terminally ill, others say when they're suffering. The stated criteria vary between Compassion and Choices and Final Exit Network, among others, and some people switch group affiliations and eligibility criteria depending on the audience.
The disability experience is that people who are labeled "terminal," based on a medical prediction that they will die within six months, are—or will become—disabled.
The real issue is the reasons people ask for assisted suicide. Although intractable pain has been sold as the primary reason for enacting assisted suicide laws, it's really a "bait-and-switch" situation. The reasons doctors actually report for issuing lethal prescriptions are the patient's "loss of autonomy," "loss of dignity" and "feelings of being a burden."
Those feelings often arise when a person acquires physical impairments that necessitate relying on other people for help in tasks and activities formerly carried out alone. Those are disability issues. In a society that prizes physical ability and stigmatizes impairments, it's no surprise that previously able-bodied people equate disability with loss of dignity.
Studies of patient attitudes toward assisted suicide and euthanasia confirm that "[p]atients' interest in physician-assisted suicide appeared to be more a function of psychological distress and social factors than physical factors." "When patients ask for death to be hastened," another study concluded, "the following areas should be explored: the adequacy of symptom control; difficulties in the patient's relationships with family, friends, and health workers; psychological disturbances, especially grief, depression, anxiety...."
Our Lives Portrayed as Tragedies
The desire for euthanasia or assisted suicide resulted from fear and experience of two main factors: disintegration and loss of community. These factors combined to give participants a perception of loss of self.... Symptoms and loss of function can give rise to dependency on others, a situation that was widely perceived as intolerable for participants: "I'm inconveniencing, I'm still inconveniencing other people who look after me and stuff like that. I don't want to be like that. I wouldn't enjoy it, I wouldn't, I wouldn't. No, I'd rather die."
Participants frequently used the notion of dignity to describe the experiences associated with disintegration: ... "You've become a bag of potatoes to be moved from spot to spot, to be rushed back and forth from the hospital, to be carried to your doctors' appointments or wheeled in a wheelchair, and it really does take away any self-worth, any dignity, or any will to continue to live."
... Loss of community entailed the progressive diminishment of desire and opportunities to initiate and maintain close personal relationships, owing to loss of mobility, exclusion and alienation by others, and self-isolating actions by participants....
Participant: "I think we should all be allowed to die with our dignity intact."
Interviewer: "OK and what do you mean by dignity?"
Participant: "Um, the ability to perform simple things like, you know, going to the bathroom on your own and not through a bag, um, breathing with your own lungs, ... I used to be somebody, but now, like I mean, you know, I'm no better than like a doll, somebody has to dress me and feed me and I guess it's uh, I don't know how to explain it, really."
These are common words for newly disabled people.
Disability groups, however, object to the implicit claim that any of us need to die to have dignity.
Needing help in dressing, bathing and other intimate daily tasks does not rob a person of autonomy and dignity. Unfortunately, popular culture has done virtually nothing to educate the public about how people with severe disabilities actually live autonomous and dignified lives. Our lives are portrayed as tragedies or sensationalized as heroism, but the real life issues and coping styles that most people will need if they live long enough are left out of the picture. No wonder people who acquire disabilities so often see death as the only viable solution.
But studies show that whether or not they are terminally ill, people who ask for assisted suicide or euthanasia usually change their minds.
Mistrust of Physicians
The disability rights movement has a long history of healthy skepticism toward medical professionals, and there's an established body of research demonstrating that physicians underrate the quality of life of people with disabilities compared with our own assessments. Our skepticism has grown into outright distrust in our profit-driven health care system.
It should be noted that suicide, as a solitary act, is not illegal in any state. Disability concerns are focused on the systemic implications of adding assisted suicide to the list of "medical treatment options" available to seriously ill and disabled people. The Oregon Law grants civil and criminal immunity to physicians providing lethal prescriptions based on a stated claim of "good faith" belief that the person was terminal, acting voluntarily, and that other statutory criteria were met. This is the lowest culpability standard possible, even below that of "negligence," which is the minimum standard theoretically governing other physician duties.
As the Oregon Reports on physician-assisted suicide make clear, the state has not been able to assess the extent of non-reporting or noncompliance with the law's purported safeguards, but only obtains brief interviews with physicians who file their paperwork. There are no enforcement provisions in the law, and the reports themselves demonstrate that non-terminal people are receiving lethal prescriptions. As the Oregonian newspaper stated on March 8, 2005 in "Living with the dying 'experiment,'" examining the case of David E. Prueitt who woke from his assisted suicide after two weeks and did not try again, "The rest of us ... still need an answer from a system that seems rigged to avoid finding one."
This is the system that controls eligibility for assisted suicide under the Oregon law. Physicians decide who's terminal and who isn't, despite well-known problems with prediction. Physicians decide what "feasible alternatives" to disclose to the individual. I can't help but note, however, that these same doctors have never been required to disclose any financial conflicts of interest they might have in determining what course of treatment to recommend. We're all supposed to take it on faith that no doctor will be influenced by the financial terms of his or her health plan contracts in the information and advice they give. Physicians also decide if the individual's judgment is impaired, if the desire to die seems rational to them.
The Oregon law immunizes physicians from being accountable for each of these decisions.
Oregon Law Gives Physicians Too Much Power
The reasons doctors actually report for issuing lethal prescriptions are the patient's "loss of autonomy" (86%), "less able to engage in activities" (85%), "loss of dignity" (83%), and "feelings of being a burden" (37%). People with disabilities are concerned that these psycho-social factors are being widely accepted as sufficient justification for assisted suicide, with most physicians not even asking for a psychological consultation (14%) or the intervention of a social worker familiar with home and community based services that might alleviate these feelings. The societal message is "so what?" or "who cares?"
The primary underlying practical basis for the physician's determination that the individual is eligible for assisted suicide is the individual's disabilities and physical dependence on others for everyday needs, which is viewed as depriving them of what non-disabled people often associate with "autonomy" and "dignity," and may also lead them to feel like a "burden." This establishes grounds for physicians to treat these individuals completely differently than a physically able-bodied suicidal person would be treated.
In effect, the Oregon Law gives physicians the power to judge whether a particular suicide is "rational" or not based on his or her evaluation, or devaluation, of the individual's quality of life, and then to actively assist certain suicides based on that judgment. The Oregon Death With Dignity Act authorizes and empowers physicians to discriminate in their response to a patient's expression of the wish to die based on the patient's disability. This should be viewed as a violation of the Americans with Disabilities Act, which prohibits such discrimination.
Allowing Assisted Suicide Sends Harmful Message to Society
But perhaps the most important question is not whether the rights of the few people who request assisted suicide and get it have been compromised, though that is a concern, but whether legalizing these individual assisted suicides has a broader social impact. Does it matter that a society accepts the disability-related reasons that people give for assisted suicide, declares the suicide rational and provides the lethal means to complete it neatly? Does it harm people who are not deemed eligible for assisted suicide under the current version of the law, but nevertheless experience severe illnesses and newly acquired disabilities as a loss of dignity and autonomy?
To assess that, I think we should look at the fact that Oregon has the fourth highest elder suicide rate in the country. From the disability rights perspective, this is not surprising. In the face of constant social messages over nearly two decades that needing help in everyday living robs one of dignity and autonomy, makes one a burden and justifies state sponsored suicide, maybe Oregon's elders have taken this disgusting and prejudicial message to heart.
What looks to some like a choice to die begins to look more like a duty to die to many disability activists. I have yet to see an article in which the Oregon health authorities who profess concern about the high rates elder suicide rates go so far as to even mention the Oregon Death With Dignity Act, much less examine the social message behind it. From a disability rights perspective, the potential connection seems obvious....
Listen to Us
To conclude, regardless of our abilities or disabilities, none of us should feel that we have to die to have dignity, that we have to die to be relieved of pain, or that we should die to stop burdening our families or society. Cognitive abilities must not be allowed to determine personhood under the laws of the United States. Reject the script you have been given by the right to die and the right to life movements. Instead, listen to the disability rights movement. We are your advance guard, in anticipation of the aging of our society, with decades of experience in living with disability and on the front lines of the health care system. We offer a very different vision, as well as the practical know-how and leadership to help build a society that respects and welcomes everyone.