For World Voice Day we’re reposting this guest blog by Mandy, from Hereford. For the first 30 years of Mandy’s life, staff caring for her thought she had no awareness of the outside world. When someone finally realised how much she understood, they helped her get a communication device and Mandy was finally able make her voice heard.
I was born in Warwickshire in 1965. I have cerebral palsy and use a motorised wheelchair, as well as a communication device which I operate with the back of my hand.
I did not get this device until I was 30 years old. Until then, I had no way of communicating except with my eyes and facial expressions.
Decisions made for me
I went to boarding school and then to a residential college in Devon. This would not have been my first choice, but the decision was made by the teachers from the school. I would much rather have lived closer to my family, but I was not given this option.
Then I moved into a residential home in Essex, 150 miles from home. It was a big home with 30 people in it, and only five support workers.
I used to get very angry and frustrated, because no one ever asked me what I wanted.
The staff and other professionals did not realise how much I understood, so they did not spend any time with me and I was often not allowed to make my own decisions.
It left me wondering – why? I could see other people making their own decisions. Yet I could not, just because people didn’t take the time to get to know me and understand my needs and wishes.
Finally getting a voice
In the late 1980s I moved to Hereford to live in a shared house run by Scope. I had my own room, but shared the house with a number of other people whom I had not chosen to live with.
A support worker noticed how much I understood, and helped me get a communication device. I mastered its use quite quickly, and could communicate properly for what felt like the first time.
This is where I began to feel a turning point in my life. Imagine what it was like – having a voice after all those years.
I contacted social workers, and with the help of my family and key worker, I started to make my case for living in my own home.
I had to work very hard at making people realise that it would be possible – that I would be able to cope with a more independent lifestyle where I could be in charge of my own life.
My own home
I got involved with Hereford Services for Independent Living (SIL). With their help and that of my social worker, Maggie, I claimed the allowances I needed to help pay for rent and 24-hour care.
I was very fortunate to get a fully accessible bungalow, and in August 2001, I moved into my own home. Now I really began to feel my confidence grow, and I gained more strength to make my own decisions and speak out. I built up a team of personal assistants by advertising, recruiting and interviewing. SIL supports me to arrange my finances as an employer and helps me sort out relief cover.
My support workers work a 24-hour shift, sleeping in my spare room overnight. This means I can organise my day however I choose without having to work around shift changeovers.
I recently completed a college course, and have also taken a creative writing class and written poetry. I have an active social life and often visit friends.
At this stage of my life, I feel more confident, decisive and stronger than I ever have before.