I haven't written much on here about one particular topic. I've been tempted to, especially in light of recent events like Obama's ridiculous Special Olympics comment, a friend's blog posts on the same issue, and the recent blog presence of the Spread the Word to End the Word movement. But I've hesitated, for a few reasons, not even sure if they make sense once thought all the way through. And then I heard this piece on NPR's This American Life this past weekend, and I knew I had to share it, and I also knew that I'd have to give some context to my experiences to truly convey why this story touched me. So here we go, I'll try to make it simple.
I have one sibling, a sister who is 2 years younger than I am. Using the terminology that was presented to my family when she was only a baby- she is mentally retarded. I guess it's a bit more PC to say that she has mental retardation, or even to say that she has a significant cognitive impairment. Whatever label the professionals give it, the reality is that she is a child living in the body of a 31-year-old woman's body. She has the double kick in the pants to also have mental health issues, including bipolar disorder. Basically, thinking about the crap hand that she was dealt makes me overwhelmed with guilt. Who knows why she is the way she is, and my fate was sealed differently even though we grew in the very same womb. My mother does have two brothers that were also born with mental retardation (and if you can believe it, a third who suffered significant head trauma from a childhood accident that also left him cognitively impaired), but there is no specific genetic trait that can be traced. So, just a family with a lot of tough luck.
So, I could go on and on about how my life was affected by my sister's condition-- the fear of inviting friends over to my house as a child, the shame that I felt for having that fear and the embarrassment that I didn't want to admit, the terror that coursed through me when I discovered I was pregnant each time-- always wondering if everything was developing like it was supposed to in there. I could say that I cry for the things that my sister will never experience-- she'll never be a mother, hopefully she'll never have sex (a thing that sounds awful to say, but the reality is that she's just never going to be 'old' enough for this to be a positive choice), she'll never live on her own, calling all the shots for her own life. I could say all those things and so much more, but I feel like it's more than a bit exploitative-- speaking about how her existence made my childhood challenging... it's shameful to even type those words.
I try to think about the positives in her life- she does live in a group home where her staff and housemates assemble a life that has work and recreation opportunities. I want to think that she does experience moments of true happiness, even though every time I talk to her on the phone, our less-than-10 minute conversation consists mostly of her saying that she misses me and my trying to coax her not to cry.
She lives in the same area as my parents up in Connecticut, and I guess there will come a day in the hopefully far-far-far future that I will have to assume official responsibility for her, and it terrifies me to think about how that will work. Will my family be uprooted to be near her, or will everything she is familiar with be replaced by a completely new environment closer to our home? Or will she simply have no family nearby, and we'll continue to see her on our yearly visit north? None of those options sound ideal, so I hope it's a freaking LONG time before any of those decisions need to be made.
So there's my back story, in a sort-of nutshell. If you choose to listen to the NPR piece, Remember Me, you can imagine how my emotions were in a complete turmoil as I listened the other day. The story that I'm talking about is in Act One-- it starts at the 9:00 mark and goes to about 18:15.
At a loss for a witty signature,
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