I have argued in The Art of Dying for the importance of accepting our limitations at the end of life. That may mean seeking out hospice or other palliative care. Or it may simply mean a mentally coming to terms with the fact that our lives are finite and limited. We make the best of what we have and who we are, and we realize that our relationships with others and with our Maker provides us with our deepest sense of identity.
But that is harder to do when our culture isn’t so accepting. It’s a fact, for example, that 90% of parents who discover their unborn child has Down Syndrome choose to abort.
That’s why I was interested to read this story on President Obama’s nominee for the National Council on Disability. Apparently Ari Ne’eman, founder of the Autistic Self Advocacy Network, has gotten under the skin of a lot of people by arguing that the government should divert funding for curing autism and instead use it to promote acceptance and better quality of life.
The debate (money for a cure vs. cultural acceptance) I’m less interested in. It seems both sides have a point. Certainly everyone would support finding a cure for a disability. But I think Mr. Ne’eman has a more controversial and probably a more important position. His argument, according to The New York Times, is:
Historically, the kind of genetic research supported by many parents of children with autism, Mr. Ne’eman has said, has been used to create prenatal tests that give parents the ability to detect a fetus affected by a particular condition, like Down syndrome, so that they can choose whether to terminate the pregnancy.
“We just think it makes more sense to orient research to addressing health problems or helping people communicate rather than creating a mouse model of autism or finding a new gene,” Mr. Ne’eman has said.
I agree. Promoting acceptance, it seems, would have a more immediate benefit to those with the disease. And the intolerance of those with disabilities is a cultural problem that needs addressing. It would do us all some good to be more accepting of those with extra needs.