The Illusion of Safety Through Segregation

by Dr. Gregor Wolbring in "In Touch" Vol.1, Nr.4 (1998)
the Provincial Health Ethics Network (Alberta) Newsletter
Email: gwolbrin@acs.ucalgary.ca

"In Germany they came first for the Communists, and I didn't speak up because I wasn't a Communist. Then they came for the Jews, and I didn't speak up because I wasn't a Jew. Then they came for the trade unionists, and I didn't speak up because I wasn't a trade unionist. Then they came for the Catholics, and I didn't speak up because I was a Protestant. Then they came for me, and by that time no one was left to speak up". Martin Niemoeller; resistence fighter and concentrationcamp prisoner (1892-1984)

In Canada, the disability rights movement is largely ignored in the debate of bioethical issues such as euthanasia and gene technology. The euthanasia debate is shaped by the "right to die" and "pro life" forces; the gene technology debate is shaped mostly by the medical profession and the biotechnology industry. The characteristic "disability" is used by these various parties to justify and promote their own agendas. As a consequence, a whole set of standards, morals, justifications and actions have developed that people believe are only applicable to the characteristic "disability". This has led to a false sense of security in society as most people don't view themselves as part of the disabled community.

The analysis by the disability rights movement reveals that this position is untenable; most of the arguments used to promote euthanasia or the use of gene technology can be applied not only to the characteristic "disability" but also to other characteristics, from sexual orientation and genetic composition, to heritage and living situation, as well. Let's first have a look at euthanasia. Sue Rodriguez based her argument for the legalization of assisted suicide on self-determination; and the "right to die" movement was fast to state that people with disabilities should have the right to determine when they want to die. Not being able to would be discriminatory.

Now is this really true? Every person with or without a disability can commit suicide-just forego food and water. The assistance is needed to allow for a dignified suicide-a dignified death. If assistance for this purpose is acceptable, then it must be given to everyone who doesn't want to live anymore.

Many people, youth and natives among them, end their lives. Most of them are not disabled. Most of them have violent deaths. Why are we not offering them access to a suicide/death with dignity? Or take the example of the prisoner. A long term prisoner would often prefer death over a life sentence. So if one is really committed to avoid discrimination, then EVERYONE must be given access to a death with dignity.

Now let's have a look at the use of genetic tests. The a priori assumption that life with a disability is not worth living is used to justify the development and use of predictive genetic tests and the following prevention of this characteristic (in most cases NOT cure). The hegemony of this assumption over all others surrounding disability is so great that few analysts ever question its validity. But can the use of predictive genetic tests be confined to severe disabilities or even to mild disabilities? NO! Each of the arguments used for the prevention of a certain disability (burden, low quality of life, suffering) can be equally used for the prevention of other characteristics (gender, sexual orientation, heritage, etc.) as well.

I will briefly explain the argument based on suffering using the example of Down Syndrome. In Canada the abortion rate for Down Syndrome after prenatal testing is 88%. Many reasons exist for this. People feel that the life of a Down Syndrome person is not worth living-Down Syndrome people are suffering; people can't cope with the lack of support by society; people can't cope with the blame for wasting society's resources and the outcast status they will have.

Now what do people with Down Syndrome think? Do they think their lives are not worth living? NO!! Do they feel they are suffering because they can't become CEOs or professors? NO!!

If members of the target group do not feel that they are suffering, if they feel that their lives are worth living, then society has no right to determine otherwise.

What society is employing is cultural eugenics. Society as a whole, as expressed by its individual members, is deciding a characteristic is not worth living with. It is doing this without any reflections from that target group itself. And this cultural eugenics will affect more characteristics than people realize.

A report to the National Advisory Committee on Core Health and Disability Support Services (Priorities for Genetic Services in New Zealand, 1995) states that "60 percent of the population will be affected in their health during their lifetime by a genetic condition". The use of gene technology has the potential to divide a society into two classes: the genetic positive (having a genetic defect) and the genetic negative (not having one). It has the potential to substitute the "right to be healthy" principle (which is the basis of universal public healthcare coverage) with a "NO right to be unhealthy/not mainstream" principle. The unravelling of the genetic code has the potential for increasing intolerance towards characteristics viewed as undesirable and preventable (especially if these characteristics need accommodation by the majority of society). Once the concept is established that we, the society, can judge a characteristic to be worth living with or not, then every characteristic becomes fair game. In both cases (euthanasia and gene technology) the decision about which characteristic it will be applied to is based on cultural and societal values. In essence it is cultural euthanasia and cultural eugenics. And the increase in cultural eugenics and cultural euthanasia has devastating consequences for the disability community.

In Canada, the existing negative perception of characteristic "disabilities", inspiring pity and leading to low self-respect, is getting worse. These factors automatically exclude this group from a rightful place within human right's movements, within bioethics debates, (for example, the disability community is not involved in the development of a standard in genetic counselling in the training of genetic counsellors although we are the target group), and within society.

A society that increasingly believes in individualism, in self-reliance and in less government (which is particularly strong in Alberta) indeed has no other option but to think about disability in a negative way. To depend on people, to be powerless is the ultimate disaster in the society of today. It is nice to be a volunteer but to rely on a volunteer (family, neighbours, strangers) is a patronizing situation as there is no right to demand anything (from the volunteer); no right to a certain standard. No one wants to be in this situation and many abhor just this thought. As a side effect of less government we see an increase in demand for charity (a concept that is itself demeaning and patronizing). The only way charities get money is by reinforcing the negative stereotype of the characteristic "disability". The proliferation of debates over euthanasia and the advancements in bio/gene technology have led to an increased stigmatization of the characteristic "disability" and to greater pressure to justify being "disabled".

This situation leads to the desire to fix the characteristic disability whenever possible or to prevent it if it can't be fixed. It leads to medical solutions (cure or prevention) and less to social solutions (more support, understanding).

To state it again: the behaviour pattern of society as described above can hit anyone!! The analysis by the disability rights movement indicates that a caring society which values EVERYONE and is based on equal rights for EVERYONE might be the only safeguard against the abuse of euthanasia and gene technology and the unravelling of society. The buck does NOT stop at the characteristic disability.

To exclude the disability rights community from the debate is a mistake. The views of this perspective are based on the necessity of a caring, interactive society that are of use to everyone.

Gregor Wolbring, PhD

For in depth analysis of the above issues and for references please see:

1) Submission to Health Canada; Renewal of Canadian Biotechnology Strategy, 1998.
2) Why disability rights movements do not support euthanasia.

(Dr. Wolbring welcomes comment on or discussion of the ideas he presents here. He can be contacted by email at gwolbrin@acs.ucalgary.ca.)

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