Many, many, years ago, I was hired to work in an 'experimental' group home. I wanted the job so badly because of the 'experiment' being run there. A group of people from a large facility, all of whom had relatively significant disabilities, many of whom had some significant problem behaviour, were to be moved to a community group home. Before they moved, data was collected on their daily living skills, their interactions and their problem behaviour. Once the data weighed enough, they packed their bags and moved.
We, who worked in the house, from supervisor's supervisor to we, the direct support providers, knew nothing of the specific skills, interactions or behaviours that had been the subject of such scrutiny and scribbling. We knew it had been done, but that's all we knew. We were just to go about providing service in the way we normally would. And we did. With gusto. This was the era in which the idea was dawning that maybe, just maybe, people with disabilities had a right to take their place in the community, as citizens. We all believed in that passionately.
Then, on occasion, measurements would be taken of the lives being lived in the community. Data was being complied. You see, what was being measured was simply the effect of living in the community on people who had been jailed for the crime of difference. Since we didn't know what was targeted, we couldn't work on any goals specific to what data had been collected there. Any changes, then, would be attributed to the experience of living in a neighbourhood, living with a certain degree of freedom.
Once we all knew the POINT of the research, the cost seemed high. We desperately wanted the people we had come to truly care about, truly value, to do well. To prove something to someone so that others could have the chance of coming home. We waited with anxiety to hear the results.
Well, it turns out that people simply did better, learned easier and adapted quickly to living in the community. We were relieved.
But think about this: Why would people with disabilities be the only minority group to have to statistically prove that freedom is better than captivity? Why wouldn't that just be assumed like it's assumed for everyone else. How different the difference must be if there has to be a mathematical validation to your civil liberties and your civil rights.
I am sitting in a CBC studio, staring into the world's largest microphone, waiting to be asked questions about "the case of Eve". This case caused considerable debate amongst parents, amongst service providers and, of course, amongst people with disabilities in the self advocate movement. How I ended up there, in the studio, I don't know. But the interviewer told me that she was going to have to ask me, and maybe ask me aggressively, about the issues. Sexuality, Pregnancy, Rights - was all this going too far. She said that it was her duty to ask the questions that would be asked by people both for and against the decision. I told her I was ready. I kind of fibbed.
But as the interview went on, it occurred to me that people with disabilities had proven, statistically, that freedom is better than captivity. I already knew, and it was data not opinion, that voice and choice and all that comes with living freely was a good thing, more than that, a good thing that had benefits as a side effect. So, we went live. The questions flew. When it was over, I went to lunch with the other panelist, to a restaurant nearby and we chatted about the questions. They weren't hard to answer.
The facts were simple. A woman with a disability developed a relationship with a young man with a disability. The school got worried. They were separated. Eve's mother, worried that another relationship might end in pregnancy sought to have her child sterilised. Eve objected. It took a long time but eventually, her voice was heard, right straight across the country. People with disabilities needed to be consulted about issues regarding their bodies.
But think about this: Why would people with disabilities be the only minority to have to go to court in order to prevent surgical procedures being performed on them against their clearly expressed wishes? Why wouldn't it just be assumed that a person's choice, a person's voice, be a determining factor in what is done with their bodies? How different the difference must be if there has to be a Supreme Court decision to support and a group of men in wigs to stand behind one young woman for her voice to be heard?
Freedom fighters always come in smaller packages than you might imagine. As it has been well publicised, Jenny is a young woman with Down Syndrome who had been forced, against her will, to live in a group home instead of her preferred arrangement with friends. Shut off from others, she had her cell phone removed, had her computer taken away and was restricted from leaving the house without permission or scrutiny. She spoke clearly. She spoke often. She spoke with unwavering commitment. The choice was HERS!! And it was she alone who would make decisions about her life.
Her mother and step-father fought to maintain guardianship and control. They wanted her to live where they wanted her to live, regardless of the fact that her voice was clear, and strong, and consistent. As these things do, it went to court. And right up to the day the decision was made, pundits and commentators stated that it was difficult to predict what the court would do. Sure she was clear. Sure she was consistent. Sure she was passionate about her right to make this choice. But, and to everyone it seemed - it was a very big but indeed, she had Down Syndrome.
Aren't they meek?
Aren't they mild?
Aren't they full of smiles?
We have a trick, we do, those of us who work with or otherwise support people with disabilities. We believe in their competence when they are compliant - when they agree with us, when they submit to our authority, when they bow to the hierarchy of the natural order of things. We determine incompetence when they have the temerity to dismiss our opinions as interesting but irrelevant. Yep, we use competence as the reward for compliance and submissiveness.
But Jenny and her single, strong, voice made it clear that she would be heard. And she was. She won her freedom, she won her choice.
And we already know that freedom is statistically better than captivity.
But think about this: Why is this battle being fought over and over and over again? What is it about the freedom of people with disabilities that is so frightening that battle after battle after battle has to be fought? Why does the idea that people with disabilities are citizens with rights upset us all so very much.
Take a seat, on the bus, right next to Rosa - I think you'd have a lot to talk about.