Screws and Tiaras

Yesterday afternoon there was a PTA meeting for the mothers of kids who are multiply disabled. There are about ten of us, and all of our kids are deaf and something different, i.e. one kid has Down Syndrome, one kid has diabetes and some sort of attention deficit disorder, and three or four  fall somewhere on the autistic spectrum.  My daughter is the only one in a wheelchair, though there is another kid with cerebral palsy who can walk but is developmentally disabled.  We’re sort of marginalized at the deaf school, but we have our own little sub-group. During yesterday’s discussion, we looked over brochures of places that we might visit during summer vacation, as part of research. We are supposed to be thinking about our children’s futures (and we are, believe me). But I found the brochures depressing.  There are all of these centers in out of the way places where disabled individuals bake bread or grow vegetables, or sort screws by size. Many of these places are residential. On the one hand, it’s reassuring to know that there are places where my daughter can work after she finishes high school. But on the other hand, working solely among others with disabilities would place her firmly on the fringes of society. I don’t want that for her. It sounds snobby in a way, but I don’t.

Yesterday evening, we watched TV en famille.  There was a program about a beauty contest in the Netherlands – the Miss Ability Contest. These beautiful young women with various disabilities appeared on stage in evening gowns and bathing suits. My daughter became extremely hyper while viewing, clearly convinced that there is no need to ever learn to walk when one can cruise  around in a wheelchair AND wear fabulous clothes. I’m not altogether comfortable with the notion of beauty pageants, and there was something a little bit freakish about parading these women (my prejudice?), but I couldn’t help thinking how extremely different things are in the West.


8 thoughts on “Screws and Tiaras

  1. i’m with you on pageants in general, and while the folks who put together the miss ability one probably thought they were doing a good thing, it seems creepy to me, too. why focus on their weaknesses and on outer beauty when they can be influenced to rise to their personal strengths?

  2. I think that the difference is that many of the other multiply disabled kids are mentally disabled and Lilia isn’t. She draws and writes poetry and loves beautiful shoes. I don’t see her sorting screws.

    While I too am not fond of pageants (and not fond of the idea it gives her that she doesn’t ever need to physically try to improve), I hope that seeing such events allow her to believe that she can still be seen as beautiful in the wider world and that she still has many opportunities and activities in the world.

  3. I’m glad that Lilia was inspired by the pageant, but there isn’t anything like that here. The scary thing is that Japan doesn’t seem to be the land of opportunity for people with disabilities. Even though her teachers know what she can do, there is still subtle pressure to shuffle her off to the school for the severely disabled, where the other students don’t do(or are physically incapable of doing) sign language. I worry that something will happen to me and she’ll get stuck in a home.

  4. Yes, I once borrowed the biography of Stephen Hawking in manga form from the library for her and her brother. She also has the manga bios of Helen Keller and Lena Maria (a singer who was born without arms).

  5. Hi there Gaijin Mama,
    My name is Todd. I am a soon to be returning ex-pat from St.Louis, living in Shiga-Ken. Interesting blog!
    I saw that pageant too and was a little uncomfortable with it. They definitely could have done things a little differently.
    If you ever need a good school for your child, the Kyoto School for the Deaf in Kyoto City is one of the best. I have worked here for four years and have seen them do great things with multi-impaired children. That school is a great option as it has a dormitory and helps students learn how to care for themselves.They also do an internship in high school in their second and third years.
    Anyway, keep writing and I’ll keep reading.
    Todd Ward

  6. Hi, Todd. Thanks for stopping by. I would love to check out the Kyoto School for the Deaf sometime. At the moment, I’m pretty happy with my daughter’s school, which is only 10 km from our house. The only problem is that the junior high school is on the third floor, and there is no elevator. The Tokushima School for the Deaf is going to be rebuilt and combined with the School for the Blind in a few years. There will be an elevator in the new school.

  7. Hi Suzanne,

    Lilia seems like a smart cookie to me. From what you say about her there is definitely college in the future and, for now, those brochures should go where the sun don’t shine. My husband works with young people heading in that direction, but it’s more about intellect and, in some cases, mental illnesses, and for those people, that sort of workshop is an excellent opportunity. This is the day and age in Japan where Lilia will get a good education and then move on–to whatever she wants to do.

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