Reading research on the positive effects of self-advocacy on individuals made me think about Izzy and her mother, who I met in the late 1980s. They were moving to the home counties from “up north” and Mrs Brian wanted information about organisations that might provide support.
Mrs Brian guided her 27-year-old daughter into my office, explaining that she was partially sighted and had learning difficulties. She doubted there were services “of any use for people like her”. Mrs Brian and I chatted, but Izzy remained silent despite all my efforts to include her in the conversation.
Just as I was despairing of Izzy ever talking, Mrs Brian announced that she would discuss things with me and then she would tell Izzy when it was her “turn to talk”. I felt shocked but Mrs Brian told me that she had agreed this with her daughter. Helped by Janet, a blind friend who lived in the village, I had listed local services and voluntary organisations, explaining briefly what each could provide. Mrs Brian was very pleased when I told her Janet wanted to meet them.
Who knows best?
The disapproval on Mrs Brian’s face was obvious when I began to talk about the local self-advocacy group. But Izzy jumped to her feet, firmly placing her hands on her hips, loudly announcing to me: “You can see why I need a self-advocacy group.” She then carefully explained what sort of life she hoped to lead. It was totally different from what her mother had in mind.
Janet invited mother and daughter to tea and gave them lots of useful advice, and put them in contact with the local authority team for the visually impaired. A few years later, I met Izzy at a conference. She looked well and sounded cheerful although her hearing had deteriorated. She was delighted to have a social worker who understood her need for independence “and luckily she copes well with Mum too”.
Izzy had moved into a flat with a friend from her day centre and received extensive skills training from “my mate the rehab officer for the blind”. Attending the local self-advocacy group was the highlight of her week.
The next time I met Izzy, she was doing a full-time gardening course and intended to work at a local stately home. We laughed about her visit to my office. “Gill,” she said, “my mother believed that children should be seen and not heard. Unfortunately, she did not notice that I was no longer a child.”
“You see,” she went on. “I was one of those kids that my teachers described as ‘M&S’ – mothered and smothered. Mum and I get on really well now. We have learned a lot. It is different now I can speak for myself.”
● All names have been changed
Gill Levy worked with blind and partially sighted children and adults with learning difficulties for 25 years
