Worldwide Wan



A Society Where We Can Turn “Disability” into “Individuality”

2013.02.26 Tue

Some people say “Disability is individuality.” The word sounds very pretty, but I feel it simplifies the problems too much when it’s used by people who don’t know much about the disabled. Those who are called “the disabled” are “handicapped,” at least, in some ways. But they don’t handicap themselves; rather, it’s their circumstances that handicap them. People with myopia, for example, would have great difficulty in their social life without aids such as glasses (at least I would). We can lead “normal” lives only because we have glasses or contact lenses, but without such aids, we are “the disabled.” We can consider our faces with glasses on as our individualities. But if we didn’t have such aids, we couldn’t accept the idea that “Your bad sight is your individuality.” What’s important is a society where we can turn “disability” into “individuality.”

By the way, when does it hit parents that their children might have developmental disability? I thought that was the case soon after my daughter was born. I thought that she was somehow different from other children. Although she was my first child, I couldn’t repress my intuition that was telling me something was wrong. My new-born daughter slept well, and all I had to do was change her diapers and give her milk. She needed almost no care other than that.

 “Something’s wrong with my daughter. She needs almost no care and it seems that she doesn’t catch my eye.”
I told my family and friends this, but they didn’t take my words seriously. My mother-in-law told me it wasn’t right to complain that my daughter didn’t need care, and my mother said that it was information I’d read online that was making me think that she might have developmental disability (in fact, the Internet didn’t help me so much). Searching online for “developmental disability” and “autism,” I found a number of people asking if their children had autism. And, the usual answers read, “It’s OK. You’re just worrying too much. I know a child like yours in my neighborhood,” or “My son acted in the same way, but he doesn’t have autism. So, it’s gonna be alright.” I felt uncomfortable at such answers because they treated the question as “somebody else’s problem.”
You can’t say it’s OK when you don’t actually see the child. What do they have in mind when they make irresponsible comments such as, “You’re just worrying too much” or, “It’s OK”? If your friend told you she had some symptoms that could be signs of cancer, you’d tell her to go to the hospital and have a checkup. If she did actually have cancer, how would you take responsibility if you’d told her, “It’s OK! I know a person who had symptoms like yours, but she didn’t have cancer! You’re just worrying too much!”? What you really have to say is, “If you’re concerned about your symptoms, consult with the hospital or some medical institution.” No one likes to do the job of telling someone a shocking truth. Genuine kindness, however, is to help people to face the truth and come to terms with it gradually.

“Your daughter is still too young to be diagnosed and I’m not a doctor, but as far as I can see, she looks fine,” staff at the Developmental Disability Support Center told me. It did nothing but reassure me, but the reassurance to help me in a desperate situation and the one to divert me from the truth are two completely different things. The latter is clearly harmful, and I find it irresponsible complacence. Of course, I know it’s well-intentioned, though.

My daughter did eventually manage to start catching my eye and pointing at the people and things around her, but later than most other children. But I still worried that she might have developmental disability. I had heard that some autistic children had unstable development and suddenly went backwards. All these years raising my daughter, I’d never felt that she was cute with all my heart. I was always wondering what would become of her and I couldn’t get it out of my mind. I really regret that I couldn’t enjoy raising her to my heart’s content.

Irritated by my worries, my mother told me “You’ve got to raise your child no matter what problems she has!” I was surprised by her remark. I’m not saying I don’t want to raise my daughter just because she’s disabled. What I’m worrying about is her future — what if her disability means she has to go through hard times? What if she can’t enjoy the expressive richness of books because her learning disability prevents her from reading? Of course, her disability doesn’t automatically mean she’s unhappy. Still, parents would wish to minimize the hardship their children would go through and develop their potential to its fullest.

Original article on the WAN website (October 4, 2012)

Translated from the WAN website by TAJIMA, N.