Written Articles - Perspectives of Persons with Disabilities

“Attitudes About Disability Prove Almost Lethal” - Laura Hershey ^[74]

Laura Hershey describes the trauma of discovering the application of a DNR Order on a hospitalized friend with a disability very similar to her own. The onset of pneumonia had brought about the need for a tracheotomy; subsequent to this came questions from medical staff regarding this individual’s competence, prognosis and quality of life.

Hershey powerfully articulates the questions surrounding the presuppositions often employed in examining patient competence, prognosis and quality of life. All three concepts, all subjective but wrapped in objective, clinical language, that are often only seen from a medical point of view. Furthermore, decisions regarding these concepts are often based on assumptions and stereotypes the medical profession holds regarding persons with disabilities. Hershey illustrates this by replaying a conversation between her friend, her friend’s physician, and herself. The doctor had not informed the patient of the DNR Order application. When asked about this, he posed the question, “Would you want to be put on a respirator?” Laura, recognizing the vulnerability of her friend, quickly rephrased the question by asking, “If you couldn’t breathe on your own, would you want them to use a respirator to save your life, rather than letting you die?”^[75] The patient insisted on the use of a respirator if that would provide her the means to continue living, and the doctor removed the DNR Order.

However, the account does not end there. The patient’s family - and it is not indicated whether or not they had prior knowledge of the DNR Order application - felt it was not the patient’s, but the family’s decision to remove the DNR Order. It took an arduous process for them to overcome their own perception of what constitutes “quality of life” and to support their daughter.

Hershey’s article brings to light the perspective of someone who could be in a very similar situation to her friend - they both had significant disabilities. Furthermore, Hershey identifies the pressure that is sometimes felt by persons with disabilities who sense they should just give up and die because they are not able to live the quality of life prescribed by others. Within that is also the perception that they are a burden to family, the health care system, and even to friends. It is assumed, she states, that people go into a hospital to get well; but non-disabled people suffering from acute illness are not so strenuously urged to have a DNR Order in place. People with disabilities too often get the subtle or not-so-subtle message that they’d be better off dead. There’s a double standard that equals discrimination. ^[76]

Hershey concludes by stating that although the attitudes displayed by medical staff and even family members are rarely rancorous, they do reflect the feelings many have towards persons with disabilities, namely pity, sorrow, discomfort, and a little dread.

“Suicide: Political or Personal?” - Julie Reiskin ^[77]

Reiskin writes from a interesting perspective because she is a person with Multiple Sclerosis, a condition shared by some of the patients who were assisted in their deaths by Dr. Jack Kevorkian.

Reiskin addresses a broad range of ideas around death and disability, including assisted suicide, suicide, the right to die, and the right to live. Valuable to the discussion about DNR Order applications and persons with disabilities is Reiskin’s comments on living with a severe disability and dealing with life and death issues. She writes:

“Our bodies are not as capable, and cannot weather as much trauma or interference as can the bodies of non-disabled people. Many crips [sic] have their line. The line (just so you non-disabled readers will know...) Is the level of disability at which you believe you could not continue living. Three years ago my line lay at not being able to run. Then it moved to: not being able to climb the stairs. It moved again to: not being able to walk, then to: not being able to drive. Seeing as how I am writing this and I can no longer do any of those things, it’s clear I’ve changed my line again.” [78]

What is crucial to Reiskin, and very relevant to this discussion, is the perceptions people hold about their own quality of life. This changes as adjustments to disabilities occur, but if end of life decisions are rushed by medical or other persons involved because of pre-determined perceptions regarding that “line,” as Reiskin puts it, persons with disabilities might feel some urgency to end their lives without waiting to make those adjustments.

Reiskin reflects on this further:

“We’re not dealing with the need to come up with some sort of [standardized] value statement on our lives. Nor are we really grappling with what I would do if I were in so-and-so’s shoes - or chair. This is about the individual. Where am I in my life? Do I have options? Have I done my job in life?” [79]

She concludes this portion of her writing with a question very relevant to the DNR Order discussion - should, or can, anyone else answer those questions for us? Clearly, these answers cannot be imposed on persons with disabilities if they are seen to have equal access, rights and privileges as those non-disabled members of society.

“Any Choice You Want: As Long As It’s Death” - Alice Mailhot ^[80]

Mailhot draws on the experience of another person who was almost denied life-saving treatment based on his disabilities. She states that when this individual made it clear he wanted to be admitted to hospital and to receive medical treatment, he was referred for a psychiatric consultation. His problem? He wasn’t accepting death.

She outlines her concern about the collusion of ethics and cost-effectiveness. Although Mailhot writes from an American perspective, the issues she addresses can certainly be seen as transnational. She poses the question, “How do we decide who gets to receive a scarce health resource? How long may they receive it?^[81] This, of course, is not an answerable question because no across-the-board policy exists in Canada or the United States. These questions are dealt with on a case-by-case basis, often at the sole discretion of an attending physician. Mailhot poses a frightening scenario with this question:

“‘What is the value of human life?’ is becoming, ‘What does your life cost us?’ and ‘What could we do with the money that we would value more than we do you?’” [82]

Mailhot’s chief concern is that an elite group of health managers will debate those who live, who die, and who gets what health care. A debate, she notes, is not an exercise in exploring the depths of a topic, but rather it offers wordsmiths an opportunity to be clever and to present the best argument. Her worry is that the assumptions are preset, the most obvious assumption being that the first step in designing a health care system is to decide who dies to fund it.^[83]

“The Right to Live and Be Different” - Disabled Peoples International

This past February, 130 disabled people representing 27 countries in Europe, Africa, Australia, and North America met in Solihull, UK, to discuss bioethics and human rights. This was the first occasion of its kind, and from it grew the declaration, The Right to Live and Be Different.” Segments of that document are highlighted here as a way of providing further insight into the global perspectives of persons with disabilities and the right to life.

Up until now most of us have been excluded from debates on bioethical issues. These debates have had prejudiced and negative views of our quality of life. They have denied our right to equality and have therefore denied our human rights. We must be the people who decide on our quality of life and life experience. Particular support must be given to empower the voice of mental health survivors, people with learning difficulties, people who cannot advocate for themselves and disabled children in this debate. We are full human beings. We believe that a society without disabled people would be a lesser society. Our unique individual and collective experiences are an important contribution to a rich, human society. We must strive for alliances with scientists, the medical professions, ethicists, policy-makers, human rights advocates, the media and the general public. Human rights are the responsibility of the state as well as the individual. Disabled people, our organizations, families and allies must work to ensure that international, regional and national legal instruments must ensure the implementation of rights through all scientific advances and medical practices concerning assessments of quality of life, therapeutic measures, and alleviation of “pain and suffering.” In particular we demand the provision of full and accessible (i.e. jargon-free, easy to read and in alternate information from which people can make informed decisions. Biotechnology presents particular risks for disabled people. The fundamental rights of disabled people, particularly the right to life, must be protected.

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74	Taken from the web page ourworld.compuserve.com/homepage/LauraHers.../cc110299. November 2, 1999.
75	IBid. 2.
76	IBid. 3.
77	Julie Reskin, "Suicide: Political or Personal?" The Disability Rag, March/April 1991. 19-22.
78	IBid. 20.
79	IBid. 21.
80	Alice Mailhot. "Any Choice You Want As Long As It's Death" The Disability Rag & ReSource. January/February 1995. 8-13.
81	IBid. 8.
82	IBid. 9.
83	IBid. 12.

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