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.