Designing Deaf Babies And The Question Of Disability

Is it ethical to design a deaf child?

http://jdsde.oxfordjournals.org/cgi/content/full/10/3/311

Controversy sparked the Deaf and Hearing worlds alike in 2004 when a lesbian couple began their search for a deaf sperm donor in order to increase their chances of having a deaf child of their own.

Some accused the couple of intentionally causing harm to an unborn child while others hailed the cultural and emotional aspects of deaf parents raising a deaf child. Hidden (at least to my knowledge) discriminations are prevalent at sperm banks. Potential donors are immediately rejected if they have any congenital disorders, hearing loss being one of them. This again reflects the main stream attitude that hearing disabilities (and other disabilities as well) are negative, bad, and without value; for the deaf lesbian couple, hearing impairment was a positive, wonderful valuable trait in an individual!

One of the most powerful excerpts from the article states, “To no great surprise, "designing deaf babies" magnifies radically divergent constructions of deafness, culture, and disability held within our society. On a closer look, though, it appears that both opponents and proponents of the couple's decision share a similar medicalized model of disability.” From the top experts in the medical world down to the every day you and I there is still a stigmatized, medicalized view of disability. The article argues that we should shift our thinking from a medical view to a social view of disability and when that takes place, the couple’s desire to have a deaf baby not only seems valid, but positive! “In such a reworking, both sides may end up at the same place: deafness can be a disability and deafness can be a cultural identity, not always, but often, at the same time. By laying claim to disability, the defense of designing deaf babies has the potential to contribute to the larger reworking of a moral perspective that allows for alternative and equally valid standards of normalcy.” For the full text article, see the link above.

Why should this matter to us as educators?
• As a teacher at a public policy school this would have been a terrific article to share with my students about biology, policy, ethics and attitudes towards disabilities.
• As educators we are often spoon fed medical definitions about disabilities- hearing and others- and forget or neglect the sociological, emotional and cultural aspects disabilities have on our students, their families and their rights.
• We have an implicit responsibility to teach children that all lives are equally valuable, “Indeed, it is more convenient to be hearing than deaf, but such convenience does not de facto lead to an increased value of one's life.”

Posted by Liz McOuat