Disability Diaspora
I only have a few days left. On April 1, this Wednesday, they will come for me. So many of the people I know have already been moved, I am one of the last. I have connections, I fight back, but still, it is inevitable.
It started slowly, with some cuts to funding. With exhortations to “do more with less” and the subsequent efficiencies. But if I think about it more closely, it had started even before then, with the increased professionalization of the attendant care sector, slowly and inexorably shifting control from those of us who receive services, to the people and the organizations who provide them. In much the same way as the story of the frog that won’t jump out of the boiling pot, as long as you increase the temperature very slowly, none of us truly saw where it all was leading.
Until, that is, we were told we would be moved. No longer would we live in our own apartments, in the community, independently. We would now be moved to a facility within a compound. Providing services would be cheaper there, they said. They present it as a boon — we would be among our own, see our friends every day. And aren’t we lucky — we’d have our own rooms and wouldn’t have to share!
I saw those rooms. Half the size of my living room, there was space for a bed and a chair for a visitor. I looked at the door. There was no lock. Then I went outside and saw the three words on the door, each with a space for a check mark. Home. Community. Medical. For our own safety, they said, with a sparkling smile. So our whereabouts were known, should something happen.
One of them just left. I smile at them, act as if nothing is amiss. Pretend I’m getting ready for the move. Inside, my mind is whirling, trying to find a way to escape. I think of saying I’m going to get some groceries and just keep going, with nothing but the clothes on my back. My mother would take me in, she would hide me. It would mean leaving Lucy behind, in effect handing her over to them. The thought sends ripples of despair through me, but I can’t see any way to bring her without alerting them to my plan. Either I leave her behind or I surrender to be moved, to live out my days in a compound of the disabled. I don’t think they would let me have her there, anyway.
The door closes behind them and I am alone in my own apartment, with just four days left of freedom. Supposed freedom, that is, for they watch me, they swoop in to offer help the minute I move outside my door. I am one of the last and they are suspicious of my acquiescence.
My neighbours — all able-bodied now — look at me askance, some with pity, some with growing impatience. My apartment will be empty soon, available to someone who needs it. Because I don’t need it anymore. I will have a safe home. Among my friends. At the compound. They talk about me, no longer to me. The other day, someone screamed at me that I was a freak, that I should be ashamed of being out in the world.
It happened so fast, this last step from efficiencies to exodus. And no one is fighting it, no one is disagreeing. They have handled it so well, tapped into that underlying fear of the different, the conviction that people like me should be elsewhere, out of sight. In care. And now we will be behind a wall, apart, out of sight at last.
I know how this goes. Never again, they said. And yet, here we are again.
This was a dream I had this weekend.
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OMG…I am glad that that is only a dream, though more like a nightmare and probably your deepest fears, along with the rest of us who live with disabilities, use chairs, etc.
“They” don't have to scream at us–inaccessible spaces, a shortage of adapted housing, lowered expectations, lack of jobs and a general perception that we are somehow “less” than they–do it for them.
I hope you are feeling okay.
Definitely a nightmare! It also describes nursing homes…I totally get why people don't want to move into them. Loss of control over your own life is devastating.
So easily it could happen. It has happened in the past. It is happening in some sectors of the population (the aging particularly) Terrifying.
Scary dream. This is the ultimate fear. Being left in a nursing home. Lene, I hope you have bought the 2×4 to whack me over the head if it ever comes to that.