Disability, Bioethics and Human Rights

Asch, Adrienne (2001). Disability, Bioethics and Human Rights, Ch 11 (pp 297-326) in Handbook of Disability Studies (Thousand Oaks, CA: Sage).

Priestley, Mark (2003). Disability: A Life Course Approach. Cambridge, UK: Polity Press

The two articles that I read for this week deal with the issues of bioethics, human rights and disability. Each of the articles takes quite a different stance on this issue and therefore, coupled together, give the reader a very broad understanding of the issues. The first article written by Adrienne Asch takes a more medical model stance towards the right to life of disabled people while the second article takes a much more social model approach. Both articles point out the devaluing of disabled people within society but they differ on their view as to what causes this devaluing. Although they do differ in so many ways, I believe, in the end, they come to the same solution, that is, to have the disability rights workers and the bioethical workers come together to best serve all members of society.
While reading Adrienne Asch’s article I get the sense that she is of the opinion that the bioethical community has a better grasp of the issues at hand than do those involved in disability studies. Although she does present both sides of the argument I feel she is leaning towards the bioethical side of the debate. In this article, life is seen as a commodity that has a concrete value. Impairments are seen as a problem in society. One with a disability cannot possibly have the same quality of life as someone who is impairment free. Much like the social model, it is argued that if one has a disability she/he will experience isolation, poverty and social stigma but what is different is that this model sees the problem as rooted in the individual with the disability. Disability is seen as a personal problem. Bioethics argues for things such as prenatal testing, termination of pregnancy if impairment is detected and even withholding treatments from infants with severe impairments. The argument in all of these issues is that a person with impairments could never experience good quality of life. Because these bioethics professionals are so strong in their view, it is evident that they push these views on the parents of impaired fetuses and children. Both articles agree that the idea behind prenatal testing is not informed choice but rather to screen for anomalies and if a problem exists terminate the pregnancy. New parents are not given both options; they are not offered literature from the social model of disability and are not met by people in society who are living great lives with their disabilities. Another issue that is raised in this article is that of physician-assisted suicide and who exactly should be involved in the decision-making process. It is the medical model view that if anyone should be involved it should not be the disabled person him/herself. Although the disabled person may have good cognitive functioning and may even have a very strong opinion as to what happens to her/him, he/she is often ignored and pushed aside. This article doesn’t condone this behaviour but I also don’t see the bioethics community changing its practices anytime soon. This article also doesn’t realize why these people often feel like ending their lives. Once again they see it as a personal problem rather than seeing the pressures society puts on them.
The second article, written by Mark Priestley, presents the social model view of disability with relation to the issues of bioethics and human rights. Many of the arguments from the first article are refuted and presented in a new light within this article. With relation to the issue of termination of pregnancy when impairment is detected, Priestley raises the issue of the parents who choose to have their child knowing full well about the disability. In our society, where disability is devalued so much, these parents will not only do not get the support and attention they need but, more so, they will have to live in a state of constant fear that they may be persecuted for choosing to bring a disabled life into this world. This article sees a need to remove the disabling barriers on our society instead of simply removing the disabled people as the other article suggests. Disability is not seen as an inherent problem but rather is seen as an issue that developed alongside the rise of industrial capitalism. When the economic structure of society changed so did the values system. Physical, mental and psychological differences went from being valued to being de-valued. Where bioethics would see this as inevitable, the social model sees this as something that can and needs to be changed again. This article also points out other issues such as the fact that both impaired infants and impaired adults are refused treatment for medical issues that have no relation to their impairment on the basis that they will not benefit from it as much as someone without disability would. Also, the fact that a fetus with impairment is not given the same human rights to life as a fetus without impairment is brought up. I would be very interested to see what the bioethical community has to say about these issues. As I mentioned before, although these articles do differ in their approach to disability and impairment, I believe that their solution to the problems are quite similar, that is, to have both communities come together and work towards the betterment of the lives of those with disabilities. Disability needs to become something that is cherished nt shameful, resented or hidden.