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Feeling Lucky

I realise now that I am incredibly lucky. When I was a teenager my mother worked long hours and I was left on my own for long periods of time. I often felt lonely and missed my mum. My mother worked shifts, often she would leave for work one lunchtime and not return until the next afternoon. I would get my own dinner and not see her in the morning before school. Still, I was very lucky.

The reason I was so lucky was because I could pop into work and see my mum, I could meet the people she worked with. My mum worked with adults with physical and learning disabilities. She worked in a group home where 5 adults with severe disabilities lived, 5 wonderful people who needed constant care and yet had left home and lived as independently as possible, making decisions about their own lives, going out for meals, going to the cinema, spending time with friends.

My sister worked in a day centre for adults with learning disabilities, I met the people my sister worked with and saw the lives they led. I heard my sister talking about the people she worked with, how she would describe their personalities and the things they enjoyed doing. The decisions they made about their lives.

My best friend had two foster sisters, both had learning disabilities, both I had known for as long as I remembered and I knew them well and enjoyed their company.

When my eldest son was born I took him to my mum’s work and introduced him to everyone, I still remember the joy on their faces as they cuddled my tiny baby.

I consider myself so lucky for these experiences because not only did I get to meet a range of different people, I got to see how a person with complex needs, a person who needed help washing, moving about and eating, could live an interesting life, how they could leave home and live in their own home and make decisions about the things they liked and didn’t like doing.

I never understood what a huge gift this would be. Then I was told my baby would be disabled. I was told my baby would probably grow up and have moderate disabilities. I was so lucky because I understood what this could entail and I wasn’t frightened. I was sad, I mourned the child I could have had, but I never doubted that I would keep him. I understood that his disabilities wouldn’t mean that he could never leave home, I worried for his future and how we would cope, but I never doubted that he would live as full a life as possible and make his own decisions.

Tomorrow evening there is a programme called A World Without Down’s Syndrome on BBC 2 and I urge you to watch it. We need to think about how we view people with disabilities, we need to think about a world where a person life is seen to have less value than our own. When I hear Hayley of Downs Side Up talk about her experience of when she got her daughter’s diagnosis, the thing that upsets me the most is how negative everyone was, the birth of her daughter wasn’t seen as a thing to celebrate, but instead something to feel sad about and that, to me, is a tragedy.

I am pro choice, I think people should make informed decisions about their bodies, their future and their babies. It would be hypocritical of me to say otherwise as I have been on the other side, I aborted my baby with Edward’s Syndrome because I was told she was incompatible with life. I still wish I was given more time, instead of being rushed into having a termination. I very much doubt I would have made a different decision because the severity of her condition meant she probably wouldn’t have survived birth, but perhaps I would have felt like my decision was more informed.

My biggest hope is that changes will be made so that parents are given time, time to research, to talk to other parents, to discuss things with their families. I want them to be given information that is positive, that shows the other side of disabilities. I want it to be normal to see people who are different and for us not to be scared of smiling and saying hello.

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