In 1991, I received funding from the Joseph Rowntree Foundation to carry out research which aimed to explore what independent living meant to disabled people. The research concerned people with physical impairments under retirement age, who were either living in residential care, receiving social services in their own home, or employing their own support workers (1).
Two people are in the office; they both look at me as I come in but carry on talking to each other. Not in a way of finishing off a conversation. It becomes almost embarrassing the way they seem to be deliberately keeping me waiting. Eventually, I butt in and ask if they could let KT know I’m here. “Are you from an organisation or is it personal?” I explain that he’s expecting me. “Yes you can see KT. That will be alright”.
I assume these two women are care workers as both are wearing uniforms though neither of them have name badges or, at any point, say who they are.
After chatting a bit more, one of them goes off and then comes back to say “He’s on the toilet”. Ten minutes later “He’s still on the toilet. He takes a long time”. More time elapses. “He says he doesn’t know who you are”. I explain I’ve received a letter from him and have also talked to him on the phone to set up the meeting. I then ask for ND (another person who has agreed to take part in the research). She goes off and then comes back to tell me that NF is out. I say, No it was ND I’ve arranged to see.
This is starting to feel like a Monty Python sketch, particularly as she’s walking around with a parrot on her shoulder - but it’s not dead. [I have no memory of this but it must have been true, I was writing these notes sitting in my car afterwards.]
Another care worker comes up to me and says “You’ve waited long enough. I’ll go and find ND for you”. I thank her and ask whether she could also check whether KT is expecting me.
And so, finally, I get to see both of them.
I ask when I want help here, there’s a buzzer. Half an hour later they come. It’s very frustrating. Sometimes they’re quicker, sometimes not. I get nagged here - about nothing. I don’t know what they want me to do. It’s because I’m young. They treat me like a child - some don’t but some do….I want to live in my own flat because here the staff tell you what to do. They’re not supposed to but they do….. I want to have control over my life.
It’s got worse over the years, it’s more now what the staff want. I don’t have control over my life….. I’ve been trying to leave for 8 years…at first I had a social worker who was no good but now I’ve got a better one and I’m going to get help, she’s sorting that out.
In spite of these limitations, the ILF93 has enabled thousands of people to do the kinds of things, lead the kind of lives, most non-disabled people take for granted.
People like Penny Pepper have described the difference that the ILF has made to their lives
ILF, through the care workers it paid for to match my needs and lifestyle, was a revelation. I had the same three people helping me wash and dress; the choice to change my mind in what I wore, what I ate, in when I got up – and the freedom to go to the toilet when I needed. It’s impossible to overstate the effect of this liberation.
Jenny Morris, 1993. Independent Lives? Community care or independent living, Macmillan.
(2) Ann Kestenbaum 1996. Independent Living: a Review, Joseph Rowntree Foundation.