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

Tuesday, September 01, 2009

Prevention of intellectual and developmental disabilities

Prevention of intellectual and developmental disabilities is the title of an opinion piece in the August 2009 AAIDD journal. It is written by Dr. Wayne Silverman and takes up prevention using a presentation by Alan Guttmacher, currently the acting director of the National Human Genome Research Institute.
I do not doubt that Dr. Silverman and his colleagues who consulted with him on this article are humanitarians. I also don't doubt they think they are doing what is best for persons with disabilities.

But a comment was made in the article which is just so troubling. Here is the comment
"Current research in genomics, as well as many other areas, is intended to improve understanding of the fundamental causes of disability to reduce risk, thereby lowering incidence of impairments and minimizing their severity. Should these goals be realized, the decrease, perhaps dramatically, and in some distant future significant impairments might even be eliminated altogether. As unachievable as that ultimate goal might appear to be, an assumption supporting many of the programs and much of the research agenda in the field of developmental disabilities is that we, as a society and as individuals, would be better off if physical, mental and cognitive impairments ceased to exist"(p. 320) (Silverman, W. (2009), Prevention of intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 47, 4, 320-322)

I am not sure the world would be better off if the impairments experienced by people ceased to exist. Perhaps, perhaps for individuals it would be better, however, for society as a whole, I am not sure of whether the world would be a better place should I need to have little or no responsibility for others in the community who were dependent on me. If you think our society is self-indulgent now, can you imagine what a self-indulgent society we would have if we weren't faced with the challenges that take our eyes off of ourselves, and place them on our neighbors?

A key phrase for me from the above is also where it says that there might be cures, "in some distant future." Look at the genetic information we currently have. Take down's syndrome for example. Some research indicates that 90% of parents choose to abort children with down's syndrome when prenatal diagnosis information is provided. So, as we await this distant future, people armed with genetic information will not prevent conditions, not prevent disabilities, they will kill people with those conditions and disabilities. It is breathtaking to be so naive as to not see this. It is not a question of prevention of disability. It is a question of killing people with disabilities and calling it "preventing disability."

Later, Silverman does make the comment,
"Furthermore, it must be emphasized that one of the most pressing issues facing our field has been conspicuously avoided in these examples: elective pregnancy termination based on the results of prenatal screening and diagnosis. Consideration of this critically important subject, along with negative biases of many clinicians toward developmental disability (see Bauer, 2008), must be a major part of any dialogue about prevention.(p. 321)
Do we understand, that in the real world today, the overwhelmingly utilized means of "prevention" is "elective pregnancy termination"? Elective pregnancy termination means, abortion, or killing the disabled baby. Can we really enter this discussion "leaving the issue of life and death aside"? That is the issue. We are killing people and calling that prevention. If we can prevent disability without killing people or doing other evil in the process, I am with you. However, the fact that there are decreasing rates of down's syndrome is the result of killing. That is the world I do not want to live in. People with disabilities do not have their disabilities prevented they have their lives taken. Dr. Hans Reinders makes the point in his book, The future of the disabled in liberal society, that if people suffer from down's syndrome, they suffer because of the way they are treated by society, not from the condition itself. So how do we address the negative attitudes of society? We kill the person they have the negative attitudes toward...we foolishly do NOT attempt to change the society.

Later in the article, Dr. Silverman states,
"Even leaving the issue of life and death aside, though, an outspoken segment of our community vehemently opposes prevention. As expressed by the final comment from the audience at Guttmacher's (2008) plenary presentation identifying "the elephant in the room," some among us would "not want to live" in a world without intellectual and developmental disabilities. The commitment of this gentleman and his like-minded colleagues is beyond question, as is their regard for individuals with disabilities. However other people share this commitment yet endorse the concept of prevention (although not necessarily all the strategies for possible implementation). The real elephant in the room, then, seems to be the question of whether a high regard for individuals with developmental disability inherently conflicts with support for prevention of the impairments affecting those very same people." (p. 321)

I was the person he referred to as making the last comment at the conference. You can see my response to the presentation here in a different blog entry.

I was the person mentioned above, but I was misunderstood...
Of course if there was a cure for autism I would be in favor of people with autism and their families having access to it. Of course I celebrate the medical accomplishment related to PKU. If my children had mental illness, of course I would do what I could to prevent THE MENTAL ILLNESS. From a Christian perspective, even though we see the passage where God indicates that He makes people blind or deaf (Exodus: 4:11) we also see Jesus healing a person who was born blind (John 9:3). So healing of disability is great! But you see, that is not what is going to happen.

The cataloging of the human genome will result in people being able to prenatally diagnose more conditions than ever before. So until the "distant future" that is dreamed of, we will increasingly be living in a world where people with disabilities are fewer and fewer because they are being killed as infants or young children. There are those who think that it is wonderful and that we truly are "better off if physical, mental and cognitive impairments ceased to exist." The repercussions of this statement are staggering in their potential for evil because people are equated with impairments so to say we would be better off if the conditions did not exist is tantamount to saying that the people should not exist.
I am confident that this is NOT what the authors are suggesting.
Yes there is a nuanced difference but 99% of the population will not see it.

As I stated, the article was an opinion in the Perspectives section of the journal.

Well, in my opinion, the American Association on Intellectual and Developmental Disabilities is either very naive, or simply doesn't get it.



Anonymous said...

Hans Reinders makes a solid point in saying that society’s reaction to the disabled is what makes the disabled suffer. Much like being teenage youth that seeks independence, the youth do not understand the reasoning behind not being allowed to express themselves or explore and thus they develop a sense of resentment and discomfort that is in-turn reciprocated. They too hope to develop enough to gain personal freedom. Would we kill a teenager because they are not making the world easy to live in, or cause parents difficulty? No, we use discipline in the full definition of the word (structure). If it is suffering we are trying to remove from this earth and not a living being, then an attitude adjustment seems a bit more reasonable. We ask this simple request to children all the time. I believe adults can make a shift if a five year old can manage.
Dr. McNair and Dr. Silverman seem to agree that it would be revolutionary to prevent such disabilities but, differ in their interpretations of prevention. The Department of Drug Prevention does not propose the idea of killing at-risk individuals, or even those who are using substances, as drug prevention. As long as there is more than one individual alive there will be abilty differences. We should embrace these differences and grow together.

Unknown said...

I searched your blog for this post, because I remember you bringing it up in class. I think that Drew even brought it up to me when he had your class a year ago. Anyways my reaction to the statements about prenatally diagnosing children for disabilities, and terminating the pregnancy if a disability is detected, was shock, anger, and sadness. I hate that we live in a world where aborting a pregnancy is a quick and easy solution to an undesired child. Tons of women make the choice to abort their typically developing children, because of their lack of desire to take responsibility for their actions, so I guess I can't really say I'm all that shocked that they wouldn't make the decision to abort once they heard their child will have a disability. I DO NOT believe that our world would be a better place if disabilities didn't exist. I believe every person has a purpose in fulfilling God's plan, and for us as humans to determine their value is just ridiculous. I am all for preventative treatment, but I don't think that abortion would fall under that category.
I'm with you McNair, and those people who decide to play God will have to give an account for what they've done.