Thursday, May 3, 2012

Happy Birthday Jon!


When Jonathan Frederick Will was born 40 years ago — on May 4, 1972, his father’s 31st birthday — the life expectancy for people with Down syndrome was about 20 years. That is understandable.
The day after Jon was born, a doctor told Jon’s parents that the first question for them was whether they intended to take Jon home from the hospital. Nonplussed, they said they thought that is what parents do with newborns. Not doing so was, however, still considered an acceptable choice for parents who might prefer to institutionalize or put up for adoption children thought to have necessarily bleak futures. Whether warehoused or just allowed to languish from lack of stimulation and attention, people with Down syndrome, not given early and continuing interventions, were generally thought to be incapable of living well, and hence usually did not live as long as they could have.
h/t: Anchoress

1 comment:

kgsniagfalls said...

It was a perceptive and thought-provoking article. I read that the current Pope's cousin who had Down's Syndrome was "eliminated" by the Nazi eugenics program--the sad reality is that many elite scientists then and now would have been supportive of the extermination camps had they been limited to people with disabilities. Infanticide in particular became a popular idea and practice in the early U.S. Progressive era -- popularized in a silent film by Dr. Harry J. Haiselden, a prominent Chicago surgeon -- The Black Stork -- read the book of the same title for more info (you can get a synopsis in the review on Amazon). I thought of that book when I read about the episode in George Will's recent WP article on his Down's Syndrome son -- "Jon Will's Gift." Many people commenting on the article thought the doctor asking if the parents wanted to take the baby home (assuming institutionalization as a default) sounds cruel, but it may have been a way of sorting out the parents--the ones who honestly couldn't handle it (or those who didn't want to try) and wouldn't do the child any good would be assumed to jump at the chance of getting out of a very challenging situation, while those who would most strongly object to the idea of not raising the child and would never follow that suggestion (no matter how many "experts" advised it) would probably be the ones with a strong faith, traditional values, and a solid marriage & family life (not to mention a good job) and would make good parents for a special needs child--while those in the middle "maybe" category would have a chance to think about it. At least this approach was better than what was happening at the hospital where my mother worked as office staff in the 60's -- she heard a roomful of doctors and nurses brazenly and belligerently admit to killing severely disabled newborns--the parents never even knew what happened. My mom was the only one there who voiced an objection (drawing the wrath of one of the nurses) -- and this was before abortion was legal and in a rather traditional area--Buffalo, NY. So let's not demonize those who advised institutionalization--perhaps they did so to avoid the quietly-practiced lethal alternative.

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