Last Friday I wrote about an article from the Sept. 30 edition of The Chicago Tribune which I touted as a must read for anybody who cares about disability. The author of the Op Ed piece, Randi Gillespie, told how her seven-year-old son shouted at his nine-year-old Down syndrome sister “I wish you did not have Down syndrome.”
In my family the angriest person about Jason’s down syndrome was Jason himself.
The most maddening stereotype for me is that all Down syndrome people are happy, loving and contented. The fact is Down syndrome people have the same range of emotions all of us do. They can be happy and contented but they can also be angry, bitter and ticked off at their fate.
Our first exposure to the reality that Jason struggled with bitterness about his fate came a few months after his 16th birthday. He was in a McDonald’s with Tracy when she pointed out a Down syndrome woman at another table. Tracy said, “Jason look, she’s the same as you, she has Down syndrome.”
The reaction shook Tracy and revealed a truth none of us were ready to deal with.
Jason violently shook his head and exclaimed, “Tracy, I quit being Down syndrome! I’m sixteen now!”
Our first flip reaction was “if only it was that easy.” Slowly though the tragedy of the statement grew on us. At 18 and then again at 22 Jason expressed similar sentiments. At major milestones he apparently sincerely believed that he would “grow out it.”
We hadn’t even realized how much Jason actually focused on his disability. We never had a detailed talk about it. At my wife Jean’s instigation we seldom told him he couldn’t do something. When he made noises about driving Jean never told him he couldn’t drive. Instead, she said, “You can drive when you learn to read.” When he talked about getting married, she simply told him he could get married if he could find someone who wanted to marry him. That approach seemed to make sense to him.
Yet, it is still obvious at 35 that Jason knows his fate and wishes it were otherwise. That makes a Dad sad.
Some of the words in this post will be found in my upcoming book Some People Even Take Them Home.