Sunday, November 20, 2005
Fraught with ethical dilemma
I have no idea what a coherent and humane public policy on prenatal genetic testing would look like. This
somewhat pithy article in the Times hits on many issues, including the consequences to people living with diseases detected by genetic screening if those diseases become more rare because of increased abortions to avoid bearing disabled children. Penn State professor, blogger, and father of a son with Downs, Michael Berube, who is quoted in the story is especially thoughtful about disability issues on his blog
One of the more controversial questions only briefly mentioned in the article regarded whether deafness should be considered a disability. And conclusions? Not any from me... but here are a couple of brief excerpts:
From Deafness is not a Disability
It has been my experience that many view deafness as a disability, in regards to their ability to perform on the job. Some perceive those that are Deaf, or hard of hearing, as not being equal in the work force, simply because of their inability to hear. Let me assure you that deafness does not affect an individuals capacity to complete a task. Provided the Deaf individual has adequate training for a particular job duty, they are just as able to successfully complete it, as is their hearing counterpart. Yes, they may need the assistance of an interpreter; however, the need for an interpreter does not indicate a disability. Interpreters are needed for communication with those that are able to hear, not to supplement a mental or physical skill necessary for job duties.
Being Deaf does not render an individual unable to perform at a given task. Deafness does not affect their ability to type, enter data on computers, draw blueprints for an architectural project, perform a surgery, teach a classroom full of students, perform public announcements, construct buildings, operate machinery etc. They simply cannot hear. This does not mean that they are not equal to their hearing counterparts. On the contrary, they are indeed equal in all aspects of life, and are extremely able and competent.
And from the Journal of Medical Ethics
Deaf activists often argue that deafness is not a disability. Instead, it is the constitutive condition of access to a rich and valuable culture. For this reason, they might claim, choosing deafness falls well within the bounds of the permissible; it is a choice which opens up as many and as valuable options as it closes down. They cannot deny that, on average, the deaf do much worse than the hearing on a range of significant indicators of quality of life: unemployment, education levels, income, and so on. But they argue that this is a consequence of discrimination against them, overt and covert, and not of deafness itself. If society were structured to allow for the full participation of the deaf, they maintain, the negative effects of deafness would be entirely eliminated. In this sense, deafness is strictly analogous to blackness; blacks, too, do worse, on average, than their white peers, but this is an artefact of discrimination, not a consequence of skin colour. If all the disadvantages which stem from deafness were traceable to discrimination, or even if they could all be eliminated by thoughtful planning, in the manner in which we can eliminate some of the disadvantages suffered by the wheelchair-bound by designing buildings with ramps, then this claim would be vindicated. And indeed, there is a great deal we can do to eliminate such disadvantages. We can caption television broadcasts, we can provide sign interpreters, and so forth. The internet has revolutionised the lives of many of the deaf, making communication, via email, as easy for them as it has been for most of us ever since the invention of the telephone. Though much has been done, however, and a great deal more could be achieved, we can expect the deaf always to be at some disadvantage. We are, in many ways, a logocentric culture—one which is centred around the voice. The deaf will always be cut off from the buzz of conversation, always restricted to a narrower range of jobs, always slightly alienated from the mainstream of political, social, and cultural life. Deaf culture may have its compensations, but they cannot entirely make up for this estrangement.
-Ziggy Stardust 14:19 EST |