Tuesday, November 1, 2011

Down Syndrome, Fear, and a Young Man's Hat [Jay]

I originally posted this back in April. There was some positive reaction and attempts to find a different format to publish this article, but the fact is I wrote it as a blog post and have decided that it works best in that format. I don't want to turn it into something more than what it was. Simply put, I met a lovely young man and wanted to share my thoughts after the fact. Jay

After finishing my daily swim at the local pool I was in the locker room preparing to head home and get back to work. A young man in his mid-twenties, also heading home smiled and said hello. He had Down syndrome (DS) and demonstrated more trouble with basic skills than most people I have met with DS. After we both finished getting dressed he turned to me and asked, “Do you like my hat?”

It was a beautiful Atlanta Braves hat, and I assured him that it was the finest I had ever seen. He told me me that his dad bought it for him last year at the Braves game on Father's Day. They went together to see the Braves lose to the Mets at Turner Field. We agreed that such things shouldn't happen in a just world, and then someone called him from outside the locker room. He turned to leave without saying goodbye, but even so he remains one of the top five friendliest people I have met in a men's locker room. As he walked out and the voice in the hall greeted him warmly I was haunted by the fact that our culture is largely committed to the belief that people like that young man should not be allowed to be born.

Down syndrome is most commonly caused by trisomy 21, where an extra 21st chromosome is present at conception supplied by one of the gametes (sperm or egg and most often from the egg). Other forms such as Mosaic DS and translocation account for less than 10% of all cases but all three are linked to the presence of an extra 21st chromosome. It is the most common chromosomal condition in the United States with more than 400,000 people currently living with DS. According to the National Down Syndrome Society and the National Down Syndrome Congress there is absolutely no way to predict the degree to which DS will physically impact a person prior to birth. Although 100 years ago people with DS had an average life expectancy of less than 10 years, medical advances especially in corrective heart surgery and antibiotics have extended the average life span to 60 years old. Advocates for people with DS report that, because of developmental therapy, it is increasingly typical for people with DS to be employed and live productive lives.

Even so, Physicians for Life says that 84 – 92% of all people that get a positive amniocentesis for DS in the United States choose to abort their child. This statistic is mirrored in the United Kingdom with a 92% abortion rate for DS children holding steady. For all the compassion that those who attack the pro-life position claim to have - in contrast to the supposed insensitivity of pro-life advocates - these embarrassing recalcitrant facts continue to pop up. These arguments for choice struggle to explain why things like the eugenic attack on people with DS or the sex selection abortions of China and India are wrong. Within the arguments of the absolute bodily autonomy of women and the lack of personhood of the unborn such things are simply additional considerations in the choices women must make and are completely legitimate.

After a friend's daughter was born with DS his wife became pregnant with their fourth child. The medical professionals strongly recommended amniocentesis. When asked why, they answered so my friend could decide whether or not to abort the child if it had Down syndrome. He looked across the room at his daughter and asked, “So if my next child is like that beautiful, healthy, loving little girl over there we are being offered the option of killing it?” That was all the inspiration he needed to start the steering committee that began one of the greatest pregnancy centers in the country. His daughter is now 36, in excellent health and has worked for the same employer for 15 years.

Political columnist George Will's son Jon has DS, so you understand why he takes personally the contentions that children with DS are a burden or that it would be better for all - including the children - that they not be born. In a 2005 Washington Post Editorial Will wrote:

“One mother who participated in a study of 3,000 members of five state associations of parents of Down syndrome children reported that when, in 1999, she was told that the baby she was expecting had Down syndrome, a geneticist showed her 'a really pitiful video first of people with Down syndrome who were very low tone and lethargic-looking and then proceeded to tell us that our child would never be able to read, write or count change.' Try telling that to Jon Will as he navigates Washington's subway system to use his season tickets to the Wizards basketball games and (soon) Nationals baseball games.”

“When he was born in 1972 -- a time when an episode on a network television hospital drama asserted that people with Down syndrome could not be toilet-trained -- the hospital geneticist asked Jon's parents if they intended to take him home. That question is, surely, no longer asked when Down syndrome babies are born. But there are modern pressures to prevent such babies from being born, pressures that include the perfection-is-an-entitlement attitude of some expecting parents.”

There is no doubt that DS introduces challenges. It is not helpful to characterize those prospective parents that fear how a child with DS will impact their lives and their families as inhumane or pretend that they need to simply get over it. When Scott Klusendorf, the founder and president of Life Training Institute and my boss, speaks about the so-called “tough cases” pertaining to abortion he concedes that sometimes doing the right thing requires us to take unpopular positions. Sometimes doing the right thing requires us to face challenges that others will try to convince us are not necessary. Though we don't know that everything will be okay, it is more destructive and dishonest to consider a positive diagnosis of DS as a tragedy and to characterize those with DS as suffering or the families as coping. In a 2007 press release from David Tolleson of the National Down Syndrome Congress condemning the American College of Obstetricians and Gynecologists for tacitly approving the termination of pregnancies with a positive diagnosis of DS he writes:

“Studies have shown that parents and siblings of children with Down syndrome overwhelmingly report that having a family member with that diagnosis has been a good situation. Early intervention and inclusive education have led to largely positive outcomes for children with Down syndrome. It is unacceptable that many obstetricians present negatives -- and seem to emphasize pregnancy termination -- rather than reporting the facts, which paint a much more positive picture.”

The other children of my previously mentioned friend certainly echo this sentiment. And for whatever that young man I met in the locker room has faced and overcome, whatever hardship his condition has introduced to his life and the life of his family, he certainly wasn't dwelling on them when I met him. He wanted to talk about his favorite hat that he got watching his favorite baseball team with his dad. In this, he is just like the rest of us. It is tragic that people have learned to fear something so special and scary that we have become so comfortable with, as George Will says, searching and destroying the likes of that young man.

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