“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell

Monday, June 09, 2008

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.



Anonymous said...

It is very discouraging that a group of people who think they are being advocates for people with disabilities are in fact the very opposite. Today's world is focused too much on what is convenient and it is selfish and disgusting. Along with the hidden agenda to abort babies with disabilities the idea of technology replacing human contact is now becoming a serious option which leads me to believe people are becoming lazier than ever. Someone with any sort of disability whether it is one that they have been born with or acquired later on in life, should be given the best possible attention and more importantly patience others have to offer. Nothing in life is perfect, we shouldn’t expect it to be, but when a group gets together to rally for ideas such as these it’s pretty embarrassing.

Anonymous said...

I would also have to sadly agree with Dr. McNair and anonymous. It is VERY sad that today we live in a society where it is understandable for a woman to abort her baby just because the baby has downs syndrome, or another disability. It is discouraging to know that there was a conference held to "help" individuals with a learning disability when in fact they are creating the room for the abortion of children to be justified simply because they are disabled!

My prayers go out to the families and those who have dedicated their lives to help the disabled. God has a will for us all and abortion of an unborn child is NOT the way-and abortion is NOT justified simply because the child is disabled!

Anonymous said...

In my opinion it is very discouraging that a group of people who believe they are advocates for people with disabilities are not in fact advocates at all. These advocates hidden message is to abort babies with disabilities. Just because babies may be carrying a disability such as Down syndrome does not mean that their life should be taken away. What is even scarier is that society has focused that any individual with a disability is a burden or too much for them to handle. I believe that parents who have a child with a disability should give the child the attention and love they need and treat them with kindness. Those parents who decide to abort their unborn child are selfish and cold hearted. Society as a whole does not realize that we all have some kind of disability the only difference is that ones have it worse than others. And some are noticeable where others may not be. The lesson to learn is that not everyone is perfect and each individual is unique in their own special way!

Anonymous said...

There is a growing trend in obstetric medicine of prenatal diagnosis and the selective abortion of a fetus that are likely to be born with a disability. Reasons commonly given to explain this trend include the financial implications of screening and testing policies, the disruption to families caused by the birth of a child with a disability, and the potential quality of life of the unborn child. This tend truly breaks my heart.

I believe that EVERY child is a blessing from God. God tells us that he would never give us more then we can handle and so we should view any challenge as an opportunity to please God. I do not think that it is pleasing to God to give up just because we think that things will be too hard. God has given up on us when we needed help. We all have had are moments when we struggle and need help. Children with disabilities just have more of those moments then we do. A child with debilities is still a human and deservers a chance at life. I do know that having a child with disabilities is difficult but they will bring you so much joy in the end. If you abort a child that has been diagnosed with a disability you will have to carry burden for the rest of your life. I think that would be harder to handle then any child would be.

Anonymous said...

What a sad world we live in! Not only is it a sad lack of understanding I firmly believe it is a real lack of knowledge, I can honestly state with my heart and soul that it is an act of pure ignorance on their part. How can they play God and support the idea of any abortion of persons with intellectual disabilities. Besides not all tests are 100%, I know for a fact of the medical field informing parents that their child will have intellectual disabilities and that they recommended to abort. So, many children that were diagnosed actually grow up to have none. The parents knew in their hearts that they did not care and would take that chance. They were blessed with perfect children.
In any case even if children are born with disabilities of any kind, there is a reason for that. They will need more love but they do give back so much more and keep us grounded. They are individuals who should get the same respect, love and connection as God wants them to have. Their are challenges meaning what did we do to help them or treat them to make their world a little more comfortable or secure. How would you want to be treated if you were in their position? One day we will all be judged on our actions. Remember all of Gods Children are a blessing.

Anonymous said...

I absolutely agree that it is very sad, pathetic and scary that a premier organization such as the American Association on Intellectual and Developmental Disability (AAIDD) is oblivious to the fact that there findings about the Human Genome Project and the new findings of technology will hurt the human relationship with the disabled. The first speaker seems like he did not have an issue with the fact that the findings of the Human Genome Project may possibly hurt the future of persons with intellectual disabilities. The knowledge will obviously lead to parental diagnosis and abortion of persons with various disabilities as has happened to people with Down’s syndrome. I personally have two cousins with mental retardation and I could not imagine my life without them. The humble and calming presence that they give me is priceless. Not to add their unique personalities. Also from the little information I got about the application of technology to the life of an adult with Alzheimer’s disease is actually a great thing. I think that all people disease or no disease needs the comfort of other people. The new technology is great if a person does not have loved ones that can see them all of the time. Monitoring them from a far would be very calming for them if they were unable to see them on a daily basis. Overall I think that the seminar must have been great to receive all of the information whether it was scary or good.

Anonymous said...

While I don't even believe in Master Planned Communities, I feel tremendous empathy for parents of children with severe autism. All what comes to mind is the story of Job. Also, what happens when these children become 300 pound adults that hit and bite. They are potentially lethal. I understand the argument against the blond haired blue eyed future. But I also think I'd leave the decision to abort in the hands of the parents.