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Thursday, 3 April 2014

Thoughts About Disability Awareness Days

So, a disability awareness day came and went this week: World Autism Awareness Day, on April 2.  My Facebook feed was lit up with pictures of city landmarks bathed in blue light, and autism-themed memes, and pictures of friends' autistic loved ones.

I didn't write anything this year, or post anything on the Facebook page, or even tweet anything, as I have in past years. The first year I had this blog up, I think I wrote a post for *every* disability awareness day...or week...or month. On Autism Awareness Day this year, I had a terrible headache and was just trying to get through the day, or I probably would have at least put something on my Twitter feed and the Facebook page.

But I don't think I would have written a blog post.

Call me cynical, but disability awareness days in general are starting to leave me a little cold.

Disability Awareness Days Preach to the Converted

It's not that I don't think that disability awareness days in general are a good idea, and it's always effective, particularly on social media, to see large numbers of people posting in support of something. But I think that people have become remarkably good at tuning out what isn't personally relevant to them (even if it's all over social media campaigns or right in front of their face, like the CN Tower being lit blue) and if autism is something personally relevant to them, chances are that they've already investigated it.

With one exception, which I'll talk about in a moment, the people that posted, and liked, the autism awareness messages on my Facebook feed were people with autistic loved ones. I've seen the same thing happen for Down Syndrome Awareness Day, a variety of stroke awareness days, and other disability awareness days. It all feels very within-community and insular.

Disability Awareness Days Are One Day a Year

In addition, the "like", "share", and "retweet" ease of social media, combined with the one-day-a-year focus of disability awareness days encourages a passive, shallow activism in those that want to support a cause, but don't really want to *do* anything.

I know very few of these people, by the way. The disability activists that I know and admire are utilizing social media to augment and draw attention to activist action in the offline world that frequently leaves me amazed. Their efforts make my own look utterly insignificant. I'd call them out by name, but they'd be embarrassed.

I'm talking about people that "like" something that goes by on their Facebook feed because it makes them look like they're a socially responsible person, and then don't give another thought. I used to be one of them about international news when I was in university. Someone would ask me, "Isn't it terrible what's happening in...?" and, wanting to appear socially aware and worldly, I'd emphatically agree, having no idea what they were talking about.

I wonder now if those people were actually onto me, and thought, "So what are you going to do about it?", the way I think sometimes when I see a lot of likes and comments on a disability awareness day post. I think it's a question that we all need to ask ourselves, as disability advocates, to keep ourselves honest.

When a disability awareness day is over, what are we going to do about it? Forget about it for another year? Or work to keep awareness up all year and positive change happening?

I'm not saying that everyone who supports a disability awareness day has to become a warrior for that cause. The exception on my Facebook feed that I mentioned earlier, which I really liked, was a picture that a friend had shared of two autistic young people in her church (presumably with their permission). She simply said that she wanted to show support on Autism Awareness Day for two young autistic people that she was really enjoying getting to know.

That simple, positive message, that autistic people contribute to relationships, is a very powerful disability awareness day message.

Speaking of messaging...

The good thing about disability awareness days is that they're a chance to send a powerful, concentrated message to society about disabilities. And the bad thing about disability awareness days is that they're a chance to send a powerful, concentrated message to society about disabilities. If the message is slanted toward the medical model's stance that disability is biological and and a "sickness" that needs curing, that has implications for what the disability rights movement is trying to achieve. It's so easy to set ourselves back, practically without realizing it.

And if people dispute that medical model rhetoric is still out there, or that we need to examine whether the language of disability awareness days contributes (as we should be examining whether the rhetoric of all information sources about disabilities contributes to negative ideas about disability and how disabled people are treated), consider the following:

  • Concerns about low quality of life sometimes prompt doctors to counsel mothers to abort a fetus with Down Syndrome. Also consider the case of AWA, a man with Down Syndrome given a DNR order in a UK hospital that neither he or his family even knew about, let alone consented to.

  • The story of Amelia Rivera, initially denied an organ transplant because of intellectual disability. See also the story of Paul Korby.

  • The cure-slanted rhetoric of organizations such as Autism Speaks. See "I Will Not Light It Up Blue" by Michelle Sutton for a commentary on this as it relates to Autism Awareness Day.

Words are powerful. We need to remember this. We need to make sure that we're getting the message across that we want to on disability awareness days.

Do I believe That We Need to Do Away with Disability Awareness Days?

No, not necessarily.

Not at this moment, anyway.

I don't think that, as a tool for engagement with the wider the community, they're all that effective, but that they can be one part of a strategy for engagement with the wider community to raise awareness of a given disability.  We're not at that point where people are so familiar with disabilities and the idea that disabled people have more in common with non-disabled people than they do ways in which they differ that we can do away with days that remind people of that...but maybe we need to ask ourselves whether disability awareness days are contributing constructively to getting that message across and, if they're not, how they better do that.

But I think the goal should be to not have a need for them. It'd be nice to live in a world where we all just recognized that people are different and have different needs, and not have to pathologize that to guide interactions (as in, "He has autism, so I will interact with him this way...")

Idealistic, yes. But you have to have a dream. :)

World Autism Day kicks off Autism Awareness Month in many countries. What are your thoughts on disability awareness days? Months? Days versus months?

1 comment:

  1. Great discussion! I love how you describe the passivity and status-seeking of people who want to be seen as socially aware, even though they really don't know anything about the subject. That's one of the ways organizations like Autism Speaks get support and visibility ... by default. As for awareness days, I've always wondered what, exactly, we want people to be "aware" of? The specific messages are often too unclear to be either positive or negative. Another thought ... It would be great if all the different disability groups could agree to combine into one disability awareness day, or maybe month, and promise not to dilute it by staking out others. That's not likely to happen, but it is the only sort of awareness campaign that makes sense to me.