More thoughts on Down Syndrome

As promised I want to briefly revisit the issue I began to discuss in my last post: the mass extermination of fetuses prenatally diagnosed with Down Syndrome. I thought about this issue all day yesterday and all morning as I worked in the yard weeding the garden and prepping the soil in another planter for our sunflowers. Since it was a holiday, the kids were home and were driving each other crazy I decided to pack them up for a trip to the park. After we unloaded at the park my 3 year old son immediately to the swings and so, while my girls played on the jungle gym, I pushed my son on the "baby" swings. While we were swinging a young boy, about my sons age, came up an wanted to swing too. Unfortunately the other swing was broken so I unloaded my son so this other child could swing; but once I'd taken my son out of the swing he started to talk to this young boy and they ran off to play together on the toddler part of the playground. It was evident that the young boy my son was playing with had Down Syndrome and yet my son didn't think twice about playing with him. He didn't ask about what was "wrong" with the little boy, he didn't ignore him or exclude him, he just saw another child about his age who wanted to play. They got along swimmingly and I was forced to think back to my blog post yesterday. What would it mean for my son's children, my grandchildren, if they didn't get the chance to play with other children with Down Syndrome or other "undesirable" conditions?

Although there are those who would see the "eradication" of Down Syndrome as a triumph of medical and genetic science, I have to admit that I think it would be a tremendous loss. As I worked in the garden this afternoon I was thinking about the words of John Donne: "No man is an island, entire of itself...any man's death diminishes me, because I am involved in mankind" from his Meditation XVII. I can think of no more a propos expression for my feelings on this issue...

Down Syndrome Disappearing: The Triumph of the New Eugenics

The New Atlantis » At Home with Down Syndrome

Today I found a great article that deals with an issue we explored during the last semester of my "What is Normal" class last year: the extraordinarily high abortion rate of fetuses diagnosed with Downs Syndrome. Actually the data that this article is based upon comes from a British study published in 1999 but it seems that its only been recently that people have been paying attention to this as an issue, like in this NY Times series and the article linked in this posting title.

So what does it mean that we are losing an entire segment of the human population? How should we respond? Are we all diminished because of this mass extermination of children with Down Syndrome?

One of the key issues for me when I look at this issue is trying to parse out the fine line between valuing human diversity and the right for all individuals to live a rich, full, rewarding life, and the right for women to have a choice regarding their bodies. This is one of those sticky bioethical issues that pits two equally valid claims against the other creating a critical quagmire for people on both sides of the issue. Of course, this is just another flavor of the Ashley X question and the right to life/death issues that have recently spawned a firestorm of debate within the disability and bioethics communities.

Personally, I think that it's appalling that a mother and/or a set of parents would choose to terminate a pregnancy on the basis of a positive prenatal test for Down Syndrome. Down Syndrome is like other forms of human diversity, a unique expression of the richness of the human genetic code. Individuals with Down Syndrome, and indeed all disabilities, have a right to live...just like everyone else. This is a great example of the social construction of disability because it illustrates how we have placed arbitrary judgments on what type of fetus is "desirable" or "undesirable". Indeed, if we were to develop a prenatal test for hair color and later found out that 90% of the fetuses with red hair were being aborted there would be a worldwide outcry...but because we are talking about a "disabling" condition, there is little to no attention to this issue. In fact, there are doctors and policies that encourage the abortion of fetuses with Down Syndrome, and there are parents for whom the decision to abort a child diagnosed with this condition is a foregone conclusion.

And yet, the government and society at large does nothing to stop it. Why? Because we still live in a world where disability is considered to be a deficit and it would be better for a child not to be born than to go through life living with a diverse manifestation of the human genome. At an even deeper level this is a reemergence of the eugenics policies of the early 20th century (of course this assumes that the eugenics movement actually went away...unfortunately following WWII it just went underground, but it is still a dominant discourse in the the realm of social policy and genetics). An advocate of eugenics would see this as a tremendous triumph...indeed it may be the most complete triumph of the eugenics movement to date. Certainly the Nazi attempts at exterminating certain "classes" of "undesirable" citizens was marginally successful within their regional sphere of influence; but this decimation of the population of individuals with Down Syndrome is an even greater success and is a genocide that probably far surpasses the Nazi attempts to eliminate individuals with disabilities during Aktion T4.

Okay, I have a lot more to say here, but I've got a little daughter struggling with asthma that I need to go and attend to. On an even more personal note, I have to wonder how many parents would choose to abort a fetus if there was a test for asthma? Is it a challenge for parents and child? Yes. Does it make my daughter a more compassionate and understanding individual when she sees her friends or family sick? Yes. Does it diminish her quality of life? No...it's just different. We all have issues, challenges, and bodies that don't do what they are supposed to, it's a part of being human...

Okay, I'm off to do the breathing treatments and watch Disney princess movies...more to come here as I think about this issue this afternoon...

PTSD is Draining the System? Then Don't Fight the War...Seems Simple to Me

Here's a classic case of disability being defined by medical professionals...and that's exactly what's wrong with the VA today. The Iraq War is having such huge impact on our veterans that one in five is coming home with PTSD, and now we have medical professionals stating that the VA should not be diagnosing it because it's too costly to diagnose and cover the benefits of a veteran with PTSD? Seems like this would be a good time to reevaluate our priorities. If we can no longer afford to give adequate support to our returning veterans, then it seems like the logical choice should be to get out of Iraq. It's the same logic that the state and federal government uses to shut down puppy mills and other threats to the humane treatment of animals...if the population exceeds your ability to support it then you are guilty of inhumane treatment and are shut down immediately. So, let's shut down the war...how about it? Enough is enough.

On a disability related note...since field medicine was improved during the Civil War in the U.S. we've seen every war create a new population of individuals with disabilities in this country and each time the veterans return home to realize that the world of the "norms" is not as friendly to them anymore. It seems like we would learn from the past. For example, we had veterans protesting in New York after WWI for their right to employment and we had the same issues after WWII, Korea, Vietnam, Gulf War, and now the Iraq War and we still haven't made substantive strides towards adequate support for disabled veterans. The biggest source of interest in disability studies here at UI has recently come from ROTC students and students with family in the military, because disability is now a real part of their lives and something they "have" to pay attention to. It's sad that it requires a personal connection to disability, until people start to pay attention.

Some Spring Thinking Music...for the politically minded

Disability Studies Chair Article and a Little Ranting

So here's a great story on the new DS program head at the University of Toledo: Disability studies chairman chosen - News A couple of things stand out here to me; first, if the University of Toledo can have a DS program then I believe the University of Idaho should too. There is such a huge need for DS scholarship in the West. We have a unique heritage in the West that creates a certain complexity that is not always reflected in urban-based DS programs...and most DS programs in the U.S. are in large urban universities.

The second item of note is his starting salary, noted at the end of the article. Why are Idaho faculty salaries so low? What is wrong with the state and it's inability to adequately fund education at all levels? You wanna know why Idaho schools are having a hard time retaining teachers, higher ed faculty, and other education professionals? Because the Legislature and the rest of the state think that you can get a quality education at a discount...a massive fallacy! They also seem to believe that you can retain quality faculty by gutting their benefits package and retirement plans...another huge mistake.

I was driving around Moscow this evening after my daughter's soccer game and we were counting the number of houses on the market. When we moved to Moscow two years ago we had a hard time finding a house to buy; there was nothing available. Now there are hundreds of houses on the market as faculty leave the university like rats off a sinking ship. When the University of Idaho gutted our benefits package earlier this year they touted it as an "incentive" for new hires and that it would make it more attractive to stay here...but I know for a fact that there are many faculty leaving because not only do they not get a cost of living increase from year to year, they are required to cover the majority of their health insurance on their own. Many of the lower paid faculty and staff just can't hack the burden of the new "benefits" package. In fact, I can barely handle the burden...I've had a significant health event this year and just had surgery to remove my gall bladder last week and I've paid over $7000 out of my own pocket and, still, my insurance coverage hasn't kicked in. It was supposed to kick in once we reached our family deductible at $3500...but we keep getting massive bills that our insurance isn't covering...it's a joke.

So that brings me to my final rant for the evening: Americans had better start paying attention to the health care crisis in this country. It's a bigger deal than gas prices...although you wouldn't know it from the media coverage nowadays. If we don't get someone in the White House who can stand up to the money gluttons that run the insurance and healthcare industries in this country we're going to start seeing people dying too young, homeless, and bankrupt...oh, wait we are already doing that: see here, and here, and here, and here, and here, and here, and here, and here, ad nauseum....

I mean even Ireland is holding us up as a bad example: "In the US, the majority of people depend on health insurance. One in six, 50 million people, have no insurance at all because it is so expensive. Probably another 100 million are insured with policies where the insurance company regularly refuses payment for treatments. So they have to pay out-of-pocket for proper care or go without. As a result, health bills are the number one cause of bankruptcy for workers in the US."

UN Treaty on Disability Rights goes into effect

So this past week the UN Treaty on the Rights on People with Disabilities went into effect without the U.S. ratifying it. Now, there has been a lot of speculation about why the U.S. was the only developed nation not to sign on...but this article provides what may be the "official line"...although it's a joke. As noted in this article, U.S. officials haven't signed onto the treaty because they feel it isn't as strong as the ADA and would undermine their ability to enforce the ADA...so, here's the punchline: anyone who has read the U.N. treaty and the ADA KNOWS that the UN treaty is much stronger than the ADA. Not to mention the fact that the ADA has been gutted since it was originally passed in 1990 and is just a shadow of the original policy...businesses and government have taken jackhammers to the ADA and have shot it full of holes...it's about as enforceable as a nationwide ban on eating.

Although I'm glad the UN policy is in place I do have to admit some trepidation regarding its ability to make substantive changes in local attitudes and actions. One of the main problems with the UN is its inability to enforce its policies. Look at how effective they were at keeping the U.S. out of Iraq, or stopping the genocide in Rwanda and now Darfur....they just don't have the capacity to hold individual governments accountable and, as a result, I have to guess that this treaty will be much like the UN Declaration on Human Rights....a P.C. showpiece. In fact, one of the few things I agree with Hillary Clinton about is her perspective on the UN Human Rights treaty. Several years ago she said: "There are millions of unjustly imprisoned people who don't realize that there is a UN Universal Declaration on Human Rights out there protecting them from unjust imprisonment". I just can't help but think that we will be saying the same this about the new UN disability policy in a couple of years....