Independence charade

I am 42. I used to live in a long-stay hospital and then spent 14
years in a hostel for people with learning difficulties. After that
social services put me in a house with another woman with learning
difficulties, feeling that I was now sensible enough to move out.
It was very good. I had a key worker. She helped me with my money,
medical needs and any problems that came up. Everything was
fine.

In the late 1980s, I was told my key worker would stop coming. I
thought I was losing her because I had had a tantrum with her a few
weeks before. It turns out there had been cutbacks. Social services
decided we should be more independent. I was sensible enough and no
longer eligible for services. I can read well so they took it for
granted I could understand everything.

But I couldn’t. The only support I had now was an emergency number
in another town. After 3pm on a Friday they couldn’t do much for
you. I got really upset. How could I cope? I was no longer eligible
for support, but I still needed it. I went back to my mum for help.
This was hard for her. Dad had just died and she thought I was all
sorted so that when she died she knew I would be all right. Now,
she had her child back.

Mum was terrified as she still believed what professionals had told
her when I was little – I would always be like a 12 year old. It’s
funny when you think that at the same time social services said I
didn’t need any support. I love mum, but I didn’t want her all over
my personal life. I turned to friends for support. This had good
points. They knew more about my people. But it was also bad. I was
the mate that might need help. Some friends took advantage of me.
Things were stolen from my house and my benefits book was taken.

Some people think I am lazy but I prefer to do things for myself.
Like anyone else, disabled or not, I do need help to get on in
life. At the time I felt guilty about needing help. Now I know I
have the right to support and needing it doesn’t mean I am not
independent. I know in real life no one is totally independent. We
all need support to get on.

I have some advice to people in the government and social services
about eligibility rules. Although we like to go it alone in life,
we like to have support too. To get back on the books you have to
prove you are stupid. This brings us down. Each time we make a
mistake we let ourselves down.

We don’t need to feel like we have let social services down too.
Some professionals are obsessed with independence. Sometimes I feel
like my people who live alone – and we do want to live on our own –
are just a number on a success list for the government.
Independence without proper support isn’t success; it’s just
dumping us. That’s neglect.

Julie Graysmark has learning difficulties and works for
Milton Keynes People First.