Tuesday, March 13, 2012

Wrongful Birth Suits: A No Win Situation...

This article makes me sad.

Heartsick actually, on so many levels...

The article starts by telling us that the family are good people. They only sued their healthcare providers for the money.

I have also fought for the money to get appropriate healthcare, education and other needed services for my daughter who also has Down syndrome. I have advocated with school districts, legislators, agencies and more to get what my child needs.

Fortunately, we have never been in such dire straits that we would consider saying that we would have aborted her if only we had had the chance. We have always been able to build, craft, find or get what she has needed thus far. This family's situation is heartbreaking.

I feel bad that the statement made by the parents about wishing they had aborted their daughter was repeated throughout the suit and in the media... this child will know about this. And even if she doesn't, everyone around her will. That will be hard.

Knowing the way these high-profile events strongly reinforce society's outdated prejudices about disability is upsetting as well.

I'm reminded of Jerry Lewis's controversial telethons for the MDA. The telethons with their requisite tear-jerking, did bring in the immediate money the organization needed. But the high-profile telethons heavily sold the belief that people with Muscular Dystrophy and other disabilities are pitiable, incapable and just 'less.' Everyone with a disability lives in the shadow of those telethons. Societal barriers are by far the hardest part of disability--they affect access to schools, neighborhoods, employment, etc more than any other aspect of disability.

(And that lack of access is what drives people to hold these desperation events... a NOT-YET ending cycle...)

We work on awareness, stopping the R word, More Alike than Different campaigns, but one of these cases full of anger and tears moves us all back again...

Beyond all this, it is easy to see that healthcare providers who DO suggest abortions in cases of things like Down syndrome (where needs are not usually dire and improving every year) could also be sued and lose just as badly... since the 'appropriateness' of such a suggestion depends on the patient's subjective feelings about disability, not on objective data. (Many people actively seek out babies with Down syndrome to adopt--therefore Down syndrome is not empiracally bad.)

No one won... no one will ever win in these situations.