Today -- Saturday, March 21, 2009 -- is World Down Syndrome Day, and this year it marks the 50th anniversary of the Professor Jerome Lejeune's discovery of the extra copy of chromosome 21 which causes Down syndrome.
Now known as trisomy-21 because of the third copy of the 21st chromosome, Down syndrome was first described by the English doctor, John Langdon Down, in 1866 but until Professor Lejeune's publication in 1959, the ultimate cause of Down Syndrome was unknown.
The irony of the anniversary following by one day President Obama's casual cruelty about participants in the Special Olympics was not lost on the thousands of people with Down syndrome and their families and friends who gathered at many event across the country and the world on Friday night. Mark Leach, a Louisville lawyer and father of a daughter with Down syndrome, was a guest on my show --as he was the year before-- on Friday. We had scheduled the interview to mark the occasion and to alert a broad audience of the continued effort to remind all Americans of the efforts by people with Down syndrome to overcome not just their disability but also the scorn of some ignorant segments of the public. Leach relayed his disappointment with the president's thoughtlessness, and while aware of the president's apology, Leach hoped that the most powerful man in the world would do more than have some Special Olympians over to the White House to bowl. Leach hopes President Obama will use his platform to underscore that people with disabilities live extraordinarily full and fulfilling lives.
Because I have close friends who have children with Down syndrome, I know first-hand the shock new parents feel when their baby arrives with the disability. Their expectations are suddenly overthrown, and a day of great happiness becomes one of great fear and sometimes even sorrow. Within weeks this tumult eases, and very soon for most families, a special needs child becomes a treasure though also a completely different challenge from other children.
When President Obama cracked his "joke" on Thursday night, I immediately though of my friends on that day when their children arrived, and how this week there are new parents in the same position of worry and concern for whom the president's casual put-down was not just a one-liner, but was another blow. Here was the president of the United States mocking in a phrase the life before them. For a president there are no casual asides or one-liners.
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