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8 August 2013

MENCAP LEARNING DISABILITY WEEK 2013 - MY DAUGHTER - MY SUPERHERO


Learning Disability Week is an annual awareness-raising campaign organised by Mencap. This year it is taking place from 19-25 August 2013 and will celebrate people with a learning disability, their families and supporters by asking the question; who is your real-life superhero?

This is Marie in 1970 when she was 5 years-old and I was 16. I met her when I left my home in Liverpool and went to work in a children's home in Bristol. Marie has cerebral palsy and a severe learning disability and because she was unable to walk and dragged her feet along the polished floors, the nuns locked her up in the pram store room all day or left her sitting on her cot. She was the only child with a disability and had such a miserable life.

When the home closed down and with nowhere else to go, Marie was sent to live in a large hospital in Taunton, Somerset, and on the day I took her I was offered a job there as a cadet nurse. My heart ached for this little girl and at the time I would have done anything to stay in touch with her, so, of course, I accepted the job.

The hospital was enormous and so impersonal. The only stimulation for a day-room full of children was the clatter of the food trolley that called to the ward three times a day. It was so unhomely and no place for a child to live. I made a hard decision and left the job, vowing to try and get Marie out of there too.
I set about tracing Marie's mother who made me the child's legal guardian so I could bring her out of hospital to live with me. Our first 'home' was my sister's old schoolhouse. She was a student in London and she and her husband only used it at weekends. It had no inside toilet and only a cold water tap but I didn't care and Marie didn't notice. She was still in nappies and I used to boil the water to wash them and also to bathe her in a tin bath every night. We were together and that was all that mattered. At long last, I was her mum and she was my daughter. 
Michelle Daly photo - Warrior Mums
The photo on the left was taken in 1972 by Woman's Own magazine, to celebrate the fact that I was the youngest single woman in Britain to obtain legal guardianship of someone else' child. It kind of implied that Marie was lucky to have me but even then, 41 years ago, although Marie's legs are shorter than mine, she is leading the way for me to follow - and I think that's how it's always been. We got an award that same year for bringing sunshine to the newspaper headlines after our story was serialised in the Sunday People. In her own way she's taught me so much about human nature. Her disability has brought out the good in some and the bad in others and she has brought far more into my life than I ever brought into hers. No matter what obstacles I have to face - and there have been many - she always makes me smile, putting things into perspective.
Although Marie's speech is very limited her voice has always been heard loud and clear and I like to think she has a very good quality of life. She gets 18 hours support a week and is able to access the local Day Centre with her support worker for three afternoons where she can come and go as she pleases. Choice is so important and I always ensure Marie gets hers. 
Last year I wrote a book about our lives together With a Little Help From my Friends. Some people say it's the most inspirational book they have ever read and that gives me great pleasure.
Marie is now 48 and I am 60. I feel so blessed to have met her all those years ago. We've probably made each other the people we are today. We were destined to meet and there is no doubt about it.


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