Tuesday, December 05, 2006

What's a defect?

Today's NYT has a short essay on a journal article on parents using preimplantation genetics to ensure that their offspring, like them, express genetic traits like deafness or dwarfism. Usually, the technique is used to prevent the transmission of diseases like CF and Huntington's, but a survey of 190 fertility clinics indicated that 3% had used the technique to select for a disability. Snip:
In other words, some parents had the painful and expensive fertility procedure for the express purpose of having children with a defective gene. It turns out that some mothers and fathers don’t view certain genetic conditions as disabilities but as a way to enter into a rich, shared culture.

It’s tempting to see this practice as an alarming trend; for example, the online magazine Slate called it “the deliberate crippling of children.” Dr. Robert J. Stillman of the Shady Grove Fertility Center in Rockville, Md., has denied requests to use the process for selecting deafness and dwarfism. “In general, one of the prime dictates of parenting is to make a better world for our children,” he said in an interview. “Dwarfism and deafness are not the norm.” Dr. Yury Verlinsky of the Reproductive Genetics Institute in Chicago, who also refuses these requests, said, “If we make a diagnostic tool, the purpose is to avoid disease.” But both doctors said they would not oppose sending families to other doctors who might consent.

This really seems to cut to the heart of what it means to be disabled. In the case of deafness and dwarfism, there seems to be a culture that comes along with the physical difference such that those who have access to that culture (and perhaps not to elements of the larger culture that are available to the able) desire to share the culture with offspring.

It seems pretty obvious that MS lacks a culture of its own. Our physical differences are often undetectable, and move among the larger culture even though we may be able to take part in it fully. Given the prevalence of MS, we may encounter others with the same illness without even knowing it. If there is an MS culture, it probably exists only on the net; that's the only place where we're likely to encounter each other as members of the same gimpy tribe.

1 comment:

mdmhvonpa said...

I've heard that some in the Deaf Community have become quite militant about this and look down on those who a not 'Deaf Enough'. Peculiar attitudes.