A sad lack of understanding

Well, I had an interesting past two weeks. Two weeks ago I was in Washington D.C. at the American Association on Intellectual and Developmental Disability conference. I didn't really like the format of the conference, but that is just a personal preference. What was more problematic, was that one of the main presenters was a higher up representative of the Human Genome project. I was fascinated to learn that the human genome only has about 20,000 genes, which is much less than I had been taught. Also that the wild mustard plant that populates the chaparral hills of Southern California has about 22,000 genes. Don't know what to make of that, but it does give you pause.

The larger question for me, however, is the implications of the human genome project to the future of persons with intellectual disabilities. Although the presenter spoke of genetic diseases that can be better understood and such, my mind was elsewhere. At the close of the presentation, there was the opportunity for questions. One question was asked, and then I couldn't keep silent any longer...

"The elephant in the room here, is that knowledge of the human genome and the understanding of genes that cause disability will lead to prenatal diagnosis and abortion of persons with various disabilities as has happened to people with down's syndrome. I personally do not want to live in a world without persons with intellectual disabilities. How would you respond to this concern?"

The presenter stammered about how he learned lessons from disease in his life, and then made a quick departure. I left wondering, however, whether the organization, AAIDD, or at least those who scheduled the presenter, had any notion of the connection between prenatal diagnosis and abortion of persons with genetic disabilities, or whether they supported such a connection as evidenced by the presence of the presenter. I quit the organization in 1992 when they had the leader of Planned Parenthood as a keynote presenter. What conclusion could possibly have been drawn from such a presenter other than that the organization supported the abortion of persons with intellectual disabilities. It has only been recently that I have rejoined the organization, however, I assure you that I will do what I can to change it.

During the same session, another presentation was made about the application of technology to the life of an adult with alzheimer's disease. It showed how everything from monitoring the taking of medication, to phone use, to the opening of the refrigerator or whether the stove was turned on could be done. It all seemed very cool, however, such monitoring at a distance at least in part leads to the distancing of people from people who need support, need human contact. I no longer need to have direct contact with a loved one, I can just use technology to monitor from afar. It was also reminiscent of 1984. Overall a very scary presentation, the scariness of which the presenter was oblivious to.

I thought that this is how these things happen. We chart the human genome, and the result is abortion of persons for any type of difference that we do not particularly want. It is not as if this kind of thing were not already occurring. But AAIDD was oblivious. The distancing of people from people, and the move headlong into the total monitoring, by computer of a persons life. Once again, the organization was oblivious.

Then this past week, I helped to facilitate a training on Social Role Valorization on the campus of California Baptist University. The training was excellent, and reinforced to me disconnectedness of the conference from the realities of life for and with disabled people. I honestly wonder who AAIDD thinks persons with intellectual disabilities are? Are their lives to be prevented? Are we to turn their care over to technologists?

Dr. Burton Blatt, a university special educator, and advocate for the closing of institutions in the 1960's wrote the following:

To live with our retarded children, our handicapped friends, our aging parents does place burdens on all of us, but what we must learn from the nightmare of institutionalization is that these burdens cannot be avoided or delegated, for to have a decent society we must first behave as decent individuals. Ultimately our society will discover that it is easier to meet the responsibilities to our fellow man than it is to avoid them. (A return to purgatory, from In and out of mental retardation, 1981, p. 268)

But the take home lesson is that one of the premier organizations on intellectual disabilities doesn't get it. They don't seem to know people with intellectual disabilities like I and others who were with me at the conference seem to know people with such disabilities. This lack of understanding is very sad.

McNair