Friday, March 20, 2015

World Down Syndrome Day: Fight Disability Hierarchies

Tomorrow, 3/21, is World Down Syndrome Day, so called because of the 3 copies of the 21st chromosome that marks the condition. Last year, I wrote about the limits of cute. I expanded that argument in the Fall with this "Beyond Cute" piece for Al Jazeera.

Cute is the first move, it gets people to notice Down syndrome and smile, but then what? I asked my community to think about to what extent they are playing the "long game." For example, by far the most popular Down syndrome blogs and sites have built their popularity using cute pictures of their white kids under the age of 10.  That's fine - your kids are cute and you are white. Now think about what you're doing to go beyond that and, importantly, is it working?

This year, I want to talk about disability hierarchies.

Here's an uncomfortable truth -  The Down syndrome community has it pretty good. It's uncomfortable, for me, to say this, because raising a child with Down syndrome is plenty challenging, and so I'm working hard. But compared to many other disabilities, Down syndrome carries fewer stigmas and obstacles. People with Down syndrome often have strong social skills. "Cute" has advantages, for all I'm more interested in its limitations.

Moreover, Down syndrome is common enough to give widespread familiarity with the condition. When Nico was diagnosed, I quickly discovered that most people have, at some point, met either people with Down syndrome or people who were caregivers. And their impressions were generally positive.

Moreover, the clarity of the diagnosis - Down syndrome being literally written into every cell in the body - means that qualification for certain kinds of services is easier than for other people. I've witnessed the intense anger and sadness at caregivers being unable to get services for their children, because while the need is obvious to them, the diagnosis isn't there to support it. Or the agonizing confusion of people or caregivers who just don't know what's going on with their confusion.

None of these details eliminates the challenges. We still get to own our struggles (I am all about owning our struggles), but we also need to recognize our privileges and act accordingly. This lies at the heart of the concept of the disability hierarchy.

So - If you accept my premise (and if you don't, let's talk about it), here's the key question: what does a strong position on the disability hierarchy mean for us? What responsibilities does it entail? What should we do?

My answer, of course, is to show solidarity and work across hierarchies, even if doing so does not directly benefit the Down syndrome community.

Take, for example, early intervention in the state of Illinois. As I wrote about this week for CNN and on the blog, the DHS is going to kick 4000+ children off the early intervention rolls in Illinois. Not one of those children will have Down syndrome, I'm told, as the condition brings automatic qualification. And yet, the Down syndrome community must rally to oppose those cuts. I know many conservative, relatively well-off, parents of children with Down syndrome, including some in Illinois. I know they voted for Rauner. I would like to believe that they will rally with us to save Early Intervention.

This is how we fight the divide and conquer rhetoric on disability emerging from elements in the American right-wing. We refuse to be divided. We refuse to let politicians play on the disability hierarchies, but instead stand united.

Happy World Down Syndrome Day.

4 comments:

Erin said...

I think your "cute" story was the first piece I read of yours. I guess I've been reading here for a year now! I'm grateful for your perspective, as well as your ability to get "no fluff" pieces into mainstream media. I had a thought this week that we need a bigger group of writers to spin our perspective when the media gets it wrong. I read an article about a school district in FL that was touted as embracing inclusion, and it was total crap. I commented (and I tried to avoid using the word crap), but my tiny voice got lost in the shuffle as usual. I saw the article through Think Inclusive, and it got plenty of shares. While I read plenty of great stuff about inclusion done well, most of it is either scholarly articles, or "preaching to the choir" articles/blogs that only people who want to do inclusion are reading. Remember NPR's inclusion story last year? Total crap.

I agree that we need to refuse to be divided. If only we could agree on anything. Sometimes I'm really hopeful, and other days I read comments/posts/blogs written by fellow parents and think, "With friends like these..."

So, I will do my part by never justifying my daughter's existence by making diagnosis comparisons (e.g. at least she doesn't have autism) or agreeing with someone else who makes that comparison, talking about her level of "functioning" (e.g. we are so lucky she is high functioning) or agreeing with someone who makes that suggestion, or by talking about her health in a way that implies her life is more valuable than someone who is less healthy (e.g. at least she's healthy). I will correct anyone under the age of 75 who suggests that she is an angel or that I am heroic (unless she sprouts wings and starts to fly, or I stop a speeding bus with one hand to prevent her from being struck). I will insist that inclusion in all aspects of life is not something that should be granted by powerful people, but our birthright as human beings. I will not complain to my daughter's teacher about the child in her class who has a different disability and related behavior issues. Instead, I will volunteer in the classroom each week, and continue to support my daughter's school as they figure out how to deliver a socially just education to all students.

Happy WDSD! Keep writing!!!

David Perry said...

Thank you so much Erin. It's been a really good year of writing, though many of them on terrible things. I co-sign all your pledges (except the volunteer part, due to time/work issues. And thank you for doing that!).

Lauren, Dear said...

I would say Down syndrome has a high place in the intellectual disability hierarchy. For the reasons you stated above and also because of media coverage. And number too, I suppose- it's very easy to find lots of content about Ds, but not on gene deletions and microdeletions, for example. There are no national events for 5p- (cri-du-chat syndrome) for example, and I don't see families with Ds taking up the banner even though families affected by 5p- rightfully ally with families affected by Ds.

That said, I don't think Down syndrome has a high spot in the overall disability hierarchy- which is because I see that hierachy with physical disability, perceived mild learning disability* and chronic illness at the top, intellectual/cognitive disability in the middle, and physical and cognitive/intellectual disability at the very bottom. I just want to acknowledge that people still think and say things like "at least s/he's not retarded," as much as they ever did. And many people with chronic illness/physical disability/"mild" learning disability* see themselves as in a completely different group of disability and actively seek to separate themselves from any perception that they are linked to people with cognitive delays.

Anyway, thanks for this!

Lauren Riot said...

I would say Down syndrome has a high place in the intellectual disability hierarchy. For the reasons you stated above and also because of media coverage. And number too, I suppose- it's very easy to find lots of content about Ds, but not on gene deletions and microdeletions, for example. There are no national events for 5p- (cri-du-chat syndrome) for example, and I don't see families with Ds taking up the banner even though families affected by 5p- rightfully ally with families affected by Ds.

That said, I don't think Down syndrome has a high spot in the overall disability hierarchy- which is because I see that hierachy with physical disability, perceived mild learning disability* and chronic illness at the top, intellectual/cognitive disability in the middle, and physical and cognitive/intellectual disability at the very bottom. I just want to acknowledge that people still think and say things like "at least s/he's not retarded," as much as they ever did. And many people with chronic illness/physical disability/"mild" learning disability* see themselves as in a completely different group of disability and actively seek to separate themselves from any perception that they are linked to people with cognitive delays.

Anyway, thanks for this!