The longer Stella is in my life, the less she becomes defined by what she can't do. She simply is who she is, and I am still discovering what that person is like. So much so that sometimes I am a bit gobsmacked when we are out in public and some stranger points out in a shocked voice, " ... but she is not ___". [fill in the blank. walking, talking, drinking from a cup].
Most people, I think, mean well. Our society doesn't do a very good job at all at including those with any kind of differentness, let alone disability. At any rate, for those interested, here is a primer of what not to do.
(1) "But she looks normal!". Ah, yeah, thanks, I'll just start sewing a Scarlet "D" for "disability" onto all her clothes. I have to stop myself from replying, " ... but so do you!"
(2) Crying. This has only happened once, when I briefly mentioned why Stella had so many appointments, this casual acquaintance started to cry. I said that Stella was taking longer to reach her milestones, not that she was dying.
Most people, I think, mean well. Our society doesn't do a very good job at all at including those with any kind of differentness, let alone disability. At any rate, for those interested, here is a primer of what not to do.
(1) "But she looks normal!". Ah, yeah, thanks, I'll just start sewing a Scarlet "D" for "disability" onto all her clothes. I have to stop myself from replying, " ... but so do you!"
(2) Crying. This has only happened once, when I briefly mentioned why Stella had so many appointments, this casual acquaintance started to cry. I said that Stella was taking longer to reach her milestones, not that she was dying.
(3) "What did you do [to cause this]?" The geneticist has assured me that it was most likely nothing that I did while pregnant that caused Stella's disability, but some people seem unconvinced or want to share their most heartfelt theories with me ("it's all those ultrasounds!"). Ummmm, I'll be sure to tell Dr. Schorr that she can turn her research grant in now.
(4) "Oh, I'm so sorry". Sorry for what? That I have a beautiful, happy daughter? She's doesn't need your sympathy, and either do I. We need you to treat her as the person she is, but with a bit more patience because things take her a bit longer.
(5) Send a copy of the "Holland" article. Oh, how insightful. And no, it's not like finding yourself in Holland, it's like finding yourself in Afganistan. You didn't want to go to Afganistan, you would rather be in Spain, but here you are and you can appreciate the rugged beauty of it, but frankly, damn it, it's not Spain. Navigating the medical labrynith is more like a miltary campaign that it is like touring the countryside of Holland. There is this sappy the-disabled-are-closer-to-god crap that I find a bit weird -- everyone is flawed in some way, but it is more apparent in some of us than others.
Ring the bells that can still ring. Forget your perfect offspring.
There is a crack in everything. That is how the light gets in.
--Leonard Cohen ("Anthem")
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