Travel back 25 years in time. Maybe a few years more. I was a Behaviour Therapist working with people with intellectual disabilities primarily in residential settings. I had been invited for dinner at one of the homes and had eagerly accepted. I wanted to just sit and be with people rather than have an agenda for every moment.
Every one of the people with disabilities in that house was fully verbal and very able to communicate their lives in stories. When dinner began it was much different than I expected. The food was good, and plentiful, people were eating it with relish. But there was no conversation. None. All social contact or requests for help were directed solely to one of the staff or myself. They looked at each other for nothing. One person, wanting the salt, asked the staff for salt even though it wasn't near her, it was across the table right by the elbow of one of the other people with disabilities who lived in the home.
Integrated with staff.
Isolated from others.
When I first mentioned this it was suggested that this was normal because they wanted to interact with the valued, not the devalued. It was further suggested that this was healthy behaviour and evidence that we needed to move quickly towards integration. It was finally suggested that my feelings that something was wrong here suggested that I was stuck in the old model of serving people with disabilities - that 'Normalization' meant that people with disabilities shouldn't be relating to one another or forming attachments with one another.
Not for the first time in my life I thought 'fuck normalization.'
I went back to the home and sat with with the people who lived there and talked to them about what they wanted. They were clear that interactions with each other had been discouraged and interactions with non-disabled people, only, had been encouraged. They were afraid to talk to each other and didn't even know how anymore.
After meeting with staff and meeting with various people who wanted to have a say in whether or not disabled people could talk to one another, I was given the approval to go ahead. It took but a week to get conversation going at the table that included everyone and excluded no one.
Why am I telling you this now?
At Vita, where work I happened by a group of people with disabilities together, waiting for an event to start. They had all gathered before I got there, as I approached I heard this buzz of conversation and the occasional burst of laughter. This was a group of people who enjoyed each other's company. When I turned the corner I saw that it was a group of people with intellectual disabilities. Not a staff anywhere in sight.
It's moments like these that affirm the rise of the disability community. It's moments like these that affirm that pride, and identity are at heart of the disability movement. It's moments like these that make it clear that, despite our philosophy and ideals, the people who have disabilities are becoming a people, a community and a movement.
Some days it's great to go to work.
I'm jealous. Some of us have such a long way to go.
Now that behavior is what is 'normal' human social behavior...or it was, until we all started carrying and staring at little computer screens!
It makes me so angry at what used to be a model they dared label 'care.'
And it's probably still there for the majority who can't defend themselves - because they need a bit of help - so they have to take it along with the patronizing.
Glad you're there.
Now we call it person-centred support. But it's not, really, in my experience. And next up, person-directed care.
Except that those who after all this time havent mastered person-centred aren't going tho master that, either.
It distresses me that there are still people working in some homes that don't even have a grasp of people we support are persons.
They recognize their pets as sentient, but not necessarily the folk they are paid to support. It is sickening.
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