World Down Syndrome Awareness Week
Hello, BadRep.
Today is World Down Syndrome Day 2011.
I don’t know how much you know about Down Syndrome as an individual reader. Don’t know much about it? Go and find out more about it. Think you know about it? Take some time to read and listen a bit more. Don’t be the person who scrolls on, eh?
I learned about Down Syndrome Day because I have a younger sister with Down Syndrome whom I lived with for sixteen years (I only moved out about two years ago) and so my family have lifetime membership of the Down Syndrome Association. I’d like everyone to know about it, though.
I’m not going to tell you a great deal about my family here because this is a short post – and because I haven’t asked what my sister thinks either about blogging on here, or being blogged about, yet, and not to do so would be at the least a bit cheeky. And also missing the point massively, in that “raising awareness” doesn’t mean I (an able-bodied person) get to trot out my non-consenting family on the internet in the name of Issues, or decide that me posting is better than actually getting they themselves on here to speak.
But here are some things to look at and read:
- Why disability is a feminist issue, from Feminists With Disabilities for a Way Forward. It’s a US-based perspective, but really, you should read it. Edit: this post too.
- A recent case of completely shitty education-based discrimination against a young woman with Down Syndrome. The words of her parents on this one struck a depressingly familiar chord with mine. They’ve had to navigate this sort of bullshit far too often, too.
- Mencap: find out more about what a learning disability is. Over 1.5 million people in the UK have a learning disability, so if you really care about activism and intersectionality of any kind, it’s worth your time. Seriously.
Will you let us in? A five minute film, covering 45 countries.
Read, think, share links around, and have a good week.
I have a couple of things I’d like to add:
Firstly, having met Miranda and chatted to her about her sister on several occasions, and also from my own most casual observations, it’s really striking how much there is out there for people with learning disabilities under the age of 18, as compared to how little one can observe for those aged 18 or over, one reason why the article about Southern Oregon University’s policy is particularly heart-breaking. Vulnerable, disabled children is an emotive bit of phrasing that carries an emotive concept, but it can negate the fact that adults can also be vulnerable and disabled. Case in point: people with Down Syndrome don’t disappear at age 18, and nor should we want them to. As I said, I’m disconnected from the issue, but it is something I’ve noticed, and I felt I wanted to raise it.
Secondly, the article about disability as a feminist issue was certainly illuminating. I hadn’t really thought about healthcare provision or indeed disability services as an issue in which gender bias would appear (but of course it does, in such a wide variety of ways). However, and at the risk of being “But what about us menz” privilege-denying spawn of Satan, but rather playing devil’s advocate which at least is a role I’m comfortable with, I think it’s important not to make disability into a PURELY feminist issue. What I mean by that is that there are plenty of reasons why it is a feminist issue, beyond the purely economic outlined in the argument. Women for example may be more likely to take on the role of a carer. However, it would be wrong to think that men with disabilities suffer less in terms of discrimination and the sheer crapness of being disabled just because they are men. To think about it purely in the terms outlined in that article, waving a magic wand which gave all women free healthcare and support to whatever level they needed it for life would fix the problem – but it wouldn’t. There would still be people with disabilities and they’d still need support in the variety of ways that they do, from the minimal to the extreme. Again, I don’t deny that disability is a feminist issue – I just happen to think it’s one of those feminist issues that doesn’t just affect women.
Hey hey,
I would agree with the first point and extend it more generally – I think that learning disability community-based provision in the UK definitely peters out after childhood in many areas. There are many resources based in and around schools which kind of dry up as the child grows up. This is an identified issue to the point that Mencap (for whom I’ve worked) have developed resources on the theme of “transition” – on a local level places like Centre 404 (formerly Islington Mencap) in North London have far less services for adults that are not housing-based, and have only in the last couple of years begun to develop their transition (adolescent) support services. And, y’know, with government-introduced service cuts all over the place in the UK at the moment, these services are feeling very vulnerable. Transition is, however, becoming more of an issue service providers are alive to with every passing day.
With the second point I think that the key issue here is that “patriarchy” does not exist in a bubble – women have different, not uniform, experiences of inequality, which means that for feminism to be truly useful it must be mindful of other ways in which oppression takes place. Which must surely include disability, race, class and sexual orientation issues to name a few. Considering disability within a feminist context is not to make it “purely a feminist issue”, because few things are “purely” a feminist issue – but they are certainly relevant to feminism, and feminists should consider things like class, race and disability and take these things into account.
Also, I know what point you were going for, but I think “the sheer crapness of being disabled” probably isn’t the greatest way of describing disability, which is also not a uniform set of experiences. As far as my sister is concerned, although she does not enjoy her many hospital visits, from what she has said to me on a number of occasions I think I can surmise that the majority of crapness comes not from her state of being a young woman with a different set of chromosomes, but from how others treat her and the assumptions that are made about her on a near-constant basis. But again, she is only one experience!
… but one reason why I kept this post short was that I don’t want to write about that very experience without involving her far more directly and intrinsically to the activity of this blog. Rather, I wanted to make people think about the Day and put them in touch with good resources around the internet where they can see people speaking for themselves. :)
I think we’re roughly in agreement about my second point so I won’t drag it out any further here.
I agree that my phrasing was a little awkward but I was trying to find a succinct way of putting it that being disabled is always going to be, er, a disability. I was mindful when I was typing it up that everything you’ve ever told me about your sis (for example) is that she’s a pretty happy and well-adjusted person, but I was thinking about disability in general. I probably do have an ablist perspective on it though. I’m trying to think about it differently, but where I can see that there should be no special inhibition that comes from being (for example) female or a member of an ethnic minority, disability is unique as an interest group in that it does automatically imply some sort of inhibition inherent to that state.
…I seriously hope you know what I’m getting at and I don’t sound like a complete ass. If I do it’s from ignorance so educate me rather than eviscerate me!