Group News Blog
There is the smell of the place. Of old skin. And sickness. Liniments and medicines, rubber gloves and tubing. Alcohol, urine and tears.
Then in the building, there were worse sights. The people lying in beds with mouths gapped open, eyes ceiling-locked. The old man sitting in the dining room leaned against the window, quietly whimpering like a wounded dog. And the woman...the woman curled on the bed in a corner of the dining hall, contracted in a fetal ball and quivering, with knees to chin, as an attendant held a spoonful of pureéd something to her mouth, cajoling her to eat. She did not.
“So.” she said. “When I have to go back there in a few years (she's 86 years old), just make sure it's when I don't even know what's going on anymore. You can't be there all the time. It would just be me. So, if they're gonna treat me like “a package”, I'd rather be like where I don't even know about it. Don't wanna know it's happening. You get me? Cause maaaaannn, if they ever treated me like they treated your Aunt D____, and I could halfway get outta that bed? Fooey! I'd be right out that window. I'd rather jump!”
When I left the rehab unit for the first time, riding in the car sent me into hysterics after a block or two. The visual input of passing scenery was more than my brain could handle. My friend driving had to pull over until I could stop my shuddering. I rode the rest of the way with my eyes closed. That settled the answer of when I'd be able to drive: Not anytime soon.
A friend went out and bought me a phone that flashed lights as well as rang, so if I was in the same room, I'd know when a call was coming in. She helped me program the memory, to autodial numbers for me. I began slowly telling people what I'd been through. Too many people insisted on telling me that I sounded just the same as always, as if that was reassuring. But the point was, I'd looked the same, sounded the same, yet inside my head, severe damage had occurred. I'd always lived by my wits, my intellect, my extraordinary memory. This was much, much worse than losing the ability to walk. This was my ultimate nightmare.
And not a single person I knew who had seen me had noticed what was going on. It punched every isolation and abandonment button I'd ever had.
I didn't qualify for in-home help, so I was getting by with the assistance of friends (a single visit a day) and pushing myself to do as much as I could. I was scheduled for at-home physical therapy and a visiting nurse twice a week to begin the following week. The second day I was out of rehab, I went back to my surgeon's office for a follow-up visit. He wasn't much interested in hearing about the difficulties I'd had. He kept saying they were "routine side effects" and the point was, the knee replacement was a success.
It was time to take out the staples over the massive incision on my left leg. They'd held through all the vigorous physical therapy, despite being stretched very tight, and now they were starting to itch and get red around them. Pulling them out didn't hurt at all. I then walked with my walker to the x-ray room, managed to get up on the table and get a set of films made, and walked back to the exam room.
When I sat down again on the exam table, I noticed a small hole in one part of the incision, above the knee. I told my friend to get the doctor, immediately. It was a deep hole, I could tell. The surgeon and Patrick came back in, and as I sat there, I watched my incision re-open to a length of five inches and a depth of two inches. I could see almost to my bone, deep inside my thigh..
I was numb. I couldn't believe this was happening. The surgeon called it wound dehiscence and said it was common in people who keloided with scars. Then he left the room. Patrick stayed with me and explained a little more. He said they couldn't close the incision again because of the risk of infection. It would have to "heal by secondary intention", which meant from the inside out. It would take months.
[There's more... including the "Crip Ward Tango"]
The Gimp Parade- 30 -
Her name is Katie Thorpe. Other bloggers have been covering this latest story. Penny has the link collection here. Let her know if you got a link to add to the list.
I've said all I plan to say for the time being in comments at Feministe, mainly in response to the notice that disabled people weren't contributing to that thread. Here's a repeat of my comment over there:
There are a number of us disabled bloggers and blog readers around who weigh in here at Feministe occasionally. Many of us (not me this time) have been writing about this case during this past week. I’m sitting out this round (of debating the specifics of the UK case) for the reasons I specified last January when the Ashley X case came to attention, summed up beautifully by Brownfemipower back then:
Maybe, just maybe, bloggers who are disabled don’t really want to discuss shit like this over and over and over again–especially when people are not just discussing their right to access or something like that (where the presumption of humanity deserving of life is at least present), but are actually challenging disabled peoples very right to live as autonomous respected human beings. Maybe bloggers who are disabled really don’t feel like debating whether or not they are “burdens” worthy of extreme forms of violence just to suit able-bodied people. Maybe they aren’t interested in debating whether or not they have a right to be alive.
The typical response to what BFP says there is “But disabled people don’t know the burden of caring for disabled people.” Or “But the girl in question is much more disabled than these disabled people arguing against the treatment.” When exactly do our voices and experiences become relevant? I always forget when that’s supposed to kick in?