I'm sitting in a hotel in Edmonton. I'm up early. I can never sleep in on days I have off, that's something that my body wants to do on days I have to be up early. I live with conflict! As the room is quiet and as I wasn't able to connect to the web for some odd reason, and I didn't want to turn the lights on to read because Joe is still sleeping, I was at a loss.
With nothing else to do, I simply thought. The last few days have gone at such breathtaking pace that I haven't had the time to absorb all that went on. For two days in Kamloops and for an afternoon in Prince George I talked about rights with people with intellectual disabilities. In all, I would have been with over 200 people. As always happens, while we had fun, we laughed a lot, we also worked, hard. As each person put their hand up and talked about rights that they thought were important for people with disabilities, it would be written down, discussed and then we'd move on.
But this morning, some of them were coming back to me. Little snippets of memory. Images that now I could focus on. In the slowness of the morning, I could finally hear what people were saying.
One person wanted to write down "The right to have faith and practice your faith." There was discussion around care providers refusing people the right to go to church. Or forcing people to go to church. The freedom of religion, a basic human right, was being discussed in front of my eyes. My ears heard the words, but now, I get the implication. There is a loss of citizenship when people enter care. They become denizens of another land, a totalitarian state where others who 'know better' make decisions for you.
Another, "The right to talk on the phone without being listened to or montored." Even when writing this one down I was thinking 'what'? Many nodded, all agreed. The right to contact the outside world, without big brother listening in, taking notes, setting parameters of discussion. It's important to say that the person who said this was sitting quite calmly and appropriately and very definately without staff presence in the session. I say this because I know some reading will be thinking 'well sometimes we have to monitor calls because of a clinical issue, like a history of obscene or threatening calls' and I agree, that happens. But it's rare. Much rarer than the heads nodding yes in recognition of the issue.
The one that strikes me now. "The right to have rights." This has never come up in a rights session before and when we were talking about it I missed the point. They had talked, in the same breath about people not being able to read and therefore not knowing about their rights. That's what I heard and that's what I focussed on. Now in my memory I can see their faces looking at me, in disappointment. Of course they wanted all to know about the rights as written in the session.
But they wanted more too. They wanted to be understood as a 'people' as an oppressed minority as those whom the world considered below rights, underneath responsibility. They wanted to be seen as worthy of having the same rights as others, they wanted to move into the human community and be considered as members of a just society. It's all coming together in my head now, the woman waving her hand and talking about the surgery performed on Ashley. She wanted 'the right to grow up' written down. She wanted it to mean both emotionally mature but also to be allowed to grow with out surgery to eliminate adulthood. Another, wanting the right to love - without intervention of agency, of family, of state. It flew so fast about me that I missed it. The underlying message ....
WE THE PEOPLE WITH DISABILITIES DEMAND THE RIGHT TO HAVE RIGHTS.
To no longer be denied a voice as a person and a voice as a group.
It's an honour to do what I do and hear what I hear. I just wish, sometimes that I could hear in the moment, rather than during a quiet moment the next day.