The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
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Troubling Ableness
Troubling Ableness

I am a mother of a child with Down syndrome. From the moment sixteen months ago when the midwife shocked me with the news of my daughter's diagnosis, my identity has been troubled. It's not just that I've been suddenly thrust into an identity as a mother of a child with Down syndrome. It is that my daughter troubles for me the way in which so many of my socially constructed identities as a doctoral candidate, a competent teacher, an athlete, and a community activist are based in a concept of "abled." I am wrestling still with these notions of "normalcy." I want to be considered normal, or even extraordinary, and ache for my daughter who will be seen first as a sum of limitations and anything but usual. Meanwhile, Moriah not just her diagnosis, but Moriah herself continues to trouble my abled identities and to challenge my assumptions about standardization and normalcy. She is, after all, my genetic material. And the first human being my body ever produced is disabled. She's not the perfect baby I always assumed I could conceive and birth; she is, as the NICU doctor so harshly informed me hours after Moriah's birth, "anything but normal." When your baby begins her first day of life with an identity as a less-than person, an identity as a not-normal being, you begin to realize that those identities are a part of you, too. Recognizing my biological capacity for disability is the beginning of my journey to see disability and ability as dialecticals, the beginning of the tearing down between the imaginary wall I had built between those with disabilities and me throughout my life. The discomfort I had felt with the man with Down syndrome who bagged my groceries. The self-consciousness I had encountered while helping a teenager with CP in and out of her swimsuit. The way I had avoided becoming too friendly with a boy whose company I had really enjoyed in high school because he was in a wheelchair. So much of my identity, it turned out, was founded upon the avoidance of weakness and a delusional sense that able-ness was my inheritance, my genetic right. Living with Moriah moving from her therapy appointments to the university classroom to the operating room has helped me to become more comfortable with weakness. I find I'm in greater solidarity with what she has to teach me when I am not play acting, when I'm not pretending to be stronger-than, or better-than, or smarter-than. Moriah has taught me that. She needed surgery to repair her heart, a process that took five hours; I found I have a heart broken by false dichotomies that has taken over a year to mend, and is mending still. These ironies Moriah's disability so noticeable, my own foibles so easily hidden challenge my view of which one of us really needs the most intervention in life. In the final analysis, I see I am abled and not. So are we all.




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