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Developmental Disabilities Month: What is "Worth" Celebrating?
Today I spent a lot of time searching the Internet for another story like Dr. Jan Brunstrom's to blog on, as part of my continuing celebration of Developmental Disabilities Month. I know they're out there.
But today my search skills just weren't up to par and my Google search alert for news stories about disability just hadn't sent me what I'd asked for. I could find lots of stuff about Developmental Disabilities Month, but I couldn't find anything even approaching what I wanted to blog about: a story of a person with a developmental disability in a highly-respected profession, making a contribution to society that was going to make people really think about the assumptions that they held about about the capabilities of people with developmental disabilities.
In the process, I completely dismissed a story about a ninety-year-old woman with a developmental disability who'd made a new life for herself in a community home after spending most of her life in an institution. And later on in the day, that decision really caused me to think: Had I overlooked something that really *was* something that I wanted to blog about for Developmental Disabilities Month?
Life in the Institutions: A Bit of Background for Our Developmental Disabilitites Month Discussion
It wasn't so long ago that babies with developmental and/or intellectual disabilities were given a very grim prognosis. Doctors told families that the best way to deal with these children was to institutionalize them. The institutions weren't nice places.
Senator Robert Kennedy called the Willowbrook State School, an institution on Staten Island, a "snake pit" in 1965. At that point it was housing more than 2000 residents than it was supposed to, and some residents were being deliberately infected with hepatitis in order to find out more about the disease. Nothing was done about the deplorable conditions at Willowbrook, however, until Geraldo Rivera did a documentary in 1972 about what was happening behind the institution's wall. There's footage from the profile on the bottom of the "Home" tab at http://willowbrookstateschool.blogspot.com/ but be warned, it's very difficult to watch.
There's also an account on the same web page from a former resident of what life was like at Willowbrook State School (on the "A Voice Behind the Wall - A Look at Life Inside Willowbrook" tab) which is also quite eye-opening, but again difficult to read.
I recognize elements from the Willowbrook stories from stories that I've heard from stories about institutions in Canada during that period: abuse of all kinds, not allowing residents to have possessions, the lack of privacy and certainly the lack of dignity in the supports. I've seen people who used to live in institutions wolf down their meals, and been told it's because if you didn't eat your food fast in the institutions, you often got it taken away from you before you finished.
Institutional care, where is still exists (Ontario's institutions are closed, and most American states are moving in that direction; New Hampshire has closed all its institutions) had to move past this dark era and stop these abuses in order to keep operating. But that's not to say that abuses still don't happen. Additionally, from a disability standpoint, it's very problematic that people are still, in effect, warehoused in places where their opportunities for self-determination, community integration, and opportunities for building a fulfilling life are inherently (and severely) limited.
Celebrating Their Success
As I said, I've known people who lived in institutions. When they had to leave, some of them had been there many, many years. Some of them didn't have any family left, or had never known their family, so they went to live in community homes in towns where they didn't know anybody. They built lives, with the help of agency and natural supports, that were 180 degrees different than what they'd known in the institutions.
Even when change like that is totally for the better, it's very stressful. And when I think about what sorts of traumas some of these people may have endured in the institutions, that they may not even have the skills to even properly process, let alone communicate to others...I often wonder how they do as well as they do in their volunteer work and paid jobs and various types of living situations (from group home right up the spectrum to independent living).
Celebrate *All* Achievements During Developmental Disabilities Month
We certainly need to celebrate people like Dr. Jan Brunstrom during Developmental Disabilities Month. She does such wonderful work, and I want to find more people like her to blog about before Developmental Disabilities Month is over.
But we also need to celebrate the very real achievements of people with developmental disabilities who are thriving in spite of being part of some of the very worst that society has thrown at that demographic. They're still here - that's pretty darn amazing. Certainly worthy of inclusion in Developmental Disabilities month celebrations. I forgot about that this morning.
So, in light of that realization I came to today, and in further celebration of Developmental Disabilities month, here's the article about Virginia Hinson, the 90-year-old woman that I glossed over this morning because her achievements didn't seem dramatic enough. My apologies to her.