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NOW: WOMEN WITH DISABILITIES
End-of-Life Choices Symposium Karen Hwang, M.A.
Bethesda, MD: October 19th, 2003 Freelance Writer - CounselorMy name is Karen Hwang and I am speaking as a psychology grad student, a researcher, writer, and as a disabled woman.
I'm not affiliated with any groups here, but as a disabled woman I do feel that the topic under discussion has impact on my life and who owns it in the end.
Some people don't believe the choice is ours. They argue that social discrimination has rendered persons with disabilities a "vulnerable population" who could be pressured to "choose" death even when not mentally competent to do so. This so-called vulnerability argument - most publicly advanced by advocacy groups such as Not Dead Yet - states that the fear and devaluation of disability and disabled persons is so pervasive in our cultural climate that we are easily manipulated and worn down by these stereotypes to the point where death may seen like a rational choice when it in fact may not be.
The implicit message of the vulnerability argument seems to be that we do not have the right to decide for ourselves because we cannot be trusted to decide what's in our own best interest.
To me, this argument sounds illogical and ultimately self-contradictory. Since becoming disabled I have finished my college degree, put myself through graduate school, maintained a professional career and an adult romantic relationship - which IMHO hardly fits the profile of someone vulnerable to this kind of stereotyping.
Surveys I have conducted among internet-based disability communities also suggest that vast majority of us do NOT feel personally vulnerable to social discrimination. Rather, we like to think we're savvy enough to recognize and confront institutional prejudice head-on when we encounter it.
We find the vulnerability argument to be patronizing and offensive to anyone who might find themselves in terrible medical situations with diminishing quality of life. As active participants in our own medical care, the decisions we make about sustaining life revolve increasingly around not just survivability but on the quality of those remaining years. And we want the right to be supported in the decisions we make, whatever they may be.
The fatal flaw of the vulnerability argument is that it engages in the same paternalistic stereotyping it decries in the medical establishment - not about our quality of life, but about our decision-making capabilities.
I am not denying that many people with disabilities live in conditions of social deprivation and oppression. The fact that a person supports an individual's right of choice does not make one blind or insensitive to the realities of social discrimination. But the right to self-determination can and should be supported while we work to alleviate the environmental conditions that may influence some individuals to choose death when they may not otherwise do so. The independent living movement ought to be about maximizing choices, not taking them away.
A life with a disability is not meaningless. However, it must be up to each one of us to define that meaning according to our own standards.
Other notes:
The vulnerability argument is not universally accepted among the disabled population. Three consecutive Harris surveys have found that over 60 percent of people with disabilities support the right to assisted dying for competent terminally ill individuals. The most recent of these in December 2001 concluded that 68 percent of respondents with disabilities support the right to assisted dying generally and the Oregon Act in particular, and 63 percent oppose the Attorney General's effort to nullify the law. Previous studies found between 60 percent and 90 percent of people with AIDS support the right.
These background surveys, as well as some unscientific surveys I have conducted myself on online message boards, suggest that a majority of people with disabilities do support the right to assisted dying for mentally competent individuals.Why is there a double standard based on health status?
The alternative to allowing PAS, it has been proposed, is to mandate qualified disability peer counseling for all persons with disabilities and illness if they request physician-assisted suicide or refuse life-sustaining medical treatment. I don't have a problem with this. No doubt there are some people whose concerns can be alleviated through social or psycho-educational means. But there is no evidence to suggest that this would be the case for ALL people requesting PAS, and no alternative proposed for those people continue to request PAS after the mandatory counseling session is over.
This also brings up questions of, who decides what a "qualified" peer counselor is, what philosophical or political opinions they ought to endorse, and whether they can be counted on to respect a person's autonomy in light of potential philosophical differences.
Karen Hwang, M.Ed.
"Almost Doctor" Hwang has an M.Ed. in Counseling Psychology, has submitted and defended her doctoral dissertation and is presently completing her clinical internship.
Karen has published two My Spin editorials in New Mobility addressing the issue of end of life choices, one of which is included in the materials. She has published numerous other articles on issues faced by the disabled. She has also conducted research on physical disability and personal attachments in relationships, and has a paper in press to appear in the Journal of Disability Policy Studies.
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