I remember the doctor talking about my diagnosis that day in the summer of Nadia, and what would likely happen. Terms like “swan-necked fingers” and “hammer toes” were thrown around. I remember he never looked at me as he spoke, though he used my various body parts to demonstrate. Nor did he talk to me; he talked to my parents (a phenomenon I would continue to experience until I was in my teens), trying to prepare them for the future.
No one talked to me. No one asked me how I felt about the whole thing, or how I was supposed to cope with this emotionally. But it was the ’70s. Children, even sick children, were to be seen and not heard.
I have met so many parents that cannot wrap their heads around this. When I explain that while the hearing is fine, that the problem the child likely has is a listening one, they smirk and nod and say to the child, “See! I knew you were just not listening to me!”. And the hurt I see on kids faces really breaks my heart. I want to be their ally. I want to explain to their carers, the people on which their world depends that they do WANT to listen, but they cannot. I want to explain that there are many things they can do to make it easier for their child to listen, to parse that confusing, jumbly, noise their brain is presenting to them – without making it sound like concessions you have to make for a willful and “broken” child. To let them know that needing captions on TV is a valid and sound strategy and that they should encourage their children to assert themselves and ask for what they need from this noisy world of ours in order to make sense of it. Like asking for repeats. Like asking for repeats even if they get teased about being deaf, or get chastised for not paying attention the first time, or any of the other terrible things that happen when you ask for something already once given.
This is a thing that i’ve been thinking about since a couple of conversations with friends (both multiply-impaired, i.e. both neurodivergent and with physical/mobility impairments) about accessible and inaccessible venues: what are the boundaries of the concept of “accessibility”?
Since moving to a new city a month ago (more on which in an upcoming “personal update” post, if/when i get round to writing it), i’ve decided to firm up my policy of boycotting inaccessible event venues: i don’t want to give money to events or buildings that my friends who have different or additional impairments to me couldn’t get into. However, while this *looks* simple (at a superficial first glance), if you dig even a little deeper, all sorts of ambiguities arise…
So, this bill would make it a criminal offence to kill members of a group or deliberately bring about conditions that would cause the groups’ destruction if you did it based on the sex of the people in the group. I should also mention that a bill similar to this has been introduced three times previously, and that this particular issue was mentioned in the latest version of the Pink Book (see p.25).
I am all for adding “sex” to section 318(4). I think it is amazing that it isn’t already there. I also think that since this is a private members bill and is at least the fourth attempt to make this amendment, the chance that it will actually become part of the Code is on the slim side. The Canada Human Rights Act and provincial human rights legislation across the country (I’m not going to link to all of theme here) prohibit discrimination based on sex. If its not OK to pay a woman less or deny her a home because she is a woman, then it seems only reasonable, to me, that it should also be unacceptable to advocate for killing or harming women because they are women.
What advice would you have for parents raising kids with cp?
If your kid has cp they’re no different than any other kid, at least from their perspective. They know nothing else other than life with cp, even if they have siblings. I don’t see myself as someone with cp, at least not at first, and even then it takes someone pointing it out to make me see it. One of the biggest things that bothers me about parents of cp kids is when I hear them say things like, “I wish you could be normal,” or “Now you can be a normal kid.” It really makes my skin crawl. Once, while I was watching something on Discovery Health—I’m a Discovery Health junkie—this kid who was maybe 4 and had cp was having tendon lengthenings. Having had tendon lengthenings myself, I was interested to see the actual procedure done. This kid wasn’t even discharged from the hospital and his mom was crying—I mean bawling—because now he could be like “every normal boy” and I’m thinking…well I won’t tell you exactly what I thought since I’m sure you’d like to keep this at least PG-13! But basically it was, “That’s a lot of pressure to put on a kid who is barely out of an OR” especially since his normal isn’t “everyone’s” normal.
Shannon wants to talk about how his art and creativity are not tied to his disability. He wants to reinforce the idea that he is not there to fill the disability slot on any program. He is an artist. A performer. And he wants to be — no, should be — taken seriously as such. This is a really hard project. When funding often comes from disability related sources, you get promoted as a “disabled” artist. When disability is the first thing your audience sees, you are interpreted as a disabled artist. Disability has a way of making itself felt. And there’s not much you can do about it.
That said, no one should be going around — journalist or performer (it’s not clear whose phrase it is…the quotes seem to suggest it belongs to Shannon) — talking about disability ghettos.
And also, well, the past really is more complicated.
To start where Courtney ended: Yes, feminist blogs are very new, and they rock. The only blogs I knew of in the late 1990s were a few people’s personal online diaries. That was it. But by 2000, there were lots of online communities. For me, Salon’s Table Talk filled some of the needs that blogs now meet. I’d just become a mother, and I remember (for instance) lengthy discussions of Andrea Yates’ murder of her children that helped me place her act in a larger, political context of untreated postpartum depression and fundamentalist Christianity. Of course there were trolls on Table Talk, too, but it wasn’t the nightmare that Salon’s letter section is today. So, while blogs were the best invention since wine and cheese, they also built on existing forms of online community.