A world without ... Cerebral Palsy?
Last week I watched the heartwarming documentary 'A World Without Downs Syndrome' by Sally Phillips. Her son has Downs Syndrome and the documentary was about how we are gradually becoming a society that looks for the 'perfect baby', often choosing to screen against disabilities such as Downs Syndrome. Without sounding dismissive, I didn't feel I'd be interested in the programme as I didn't feel I'd be able to identify with it - you can't screen for Cerebral Palsy meaning that abortion doesn't come into it and Downs Syndrome is more of a learning disability than a physical disability.
Photo credit: https://www.thesun.co.uk/tvandshowbiz/1885437/life-feels-like-a-sitcom-bridget-jones-sally-phillips-tells-of-the-happiness-her-son-with-downs-syndrome-brings-to-their-family/
However, I found the documentary extremely identifiable and thought provoking, both from my personal perspective and from what I've heard my parents say. Throughout the documentary, the message of a 'life is a life' no matter what imperfections it may have was put across. This got me thinking. What if my parents had known I was going to have a disability? Would I be here today? Would my Mum as a 29-year-old woman have felt unable to cope?
I know my Mum has previously asked herself these questions, and just like Sally Phillips, knowing what she knows now, she is somewhat horrified that just over 21 years ago that these questions even entered her head. My Mum & Dad were offered all the disability screening tests when my Mum was pregnant with my younger sister. Having a child with a substantial disability for the previous 4 years, they politely declined and said that even if they knew my younger sibling had some kind of disability, no way on this planet could they decide to terminate after having me. On the documentary, Sally visited a mother who had decided to terminate a child after being screened positive for Downs Syndrome. Obviously as a mother who has a son with Downs Syndrome, Sally found this difficult. But, I also found it very difficult. I didn't realise how much people feared disability and how quite a lot of people would make the choice for their unborn child of 'no life at all' over 'a life that isn't quite perfect'.
Me & Mum!
I love my life, and yes, it is harder than your average Joe's, but I would not have it any other way at all. It really hurts me that if my disability was discoverable prior to birth (which is impossible as it happened during birth/just afterwards, but you know what I mean!) I would have been judged even before I had made an appearance and possibly 'disposed of'. It makes me so sad to think that my life could have possibly not have been lived. I am fairly lucky to be here anyway given the circumstances of what happened in order for me to have Cerebral Palsy, so to think I wouldn't have had the chance to fight these odds because of society's views is pretty dull. I truly believe if a individual wants to live, they will - I don't feel it should be down to others.
The last 5 minutes of the documentary really hit a chord with me. Now, when my Mum comes out with this sort of stuff, I'm like "Mum, please, you're embarrassing me!", but what Sally said almost echoed what my Mum always says. My Mum was sad about me having Cerebral Palsy for about a week, this was it. From then on, she says it has been an 'absolute privilege' to have a daughter like myself (cheers!). It has taught her the most invaluable lessons in life and what really is important. It has taught her not to live life in the fast lane (until the CP Teens Ball came along, haha!) but to always live life at 100%. She appreciates the little things in life as a result of having me and sees the beauty in life's imperfections.
As for myself, having Cerebral Palsy has really made me, me. I went through a 'rough patch' with it between the ages of 16 and 18. But, I have come out the other side and although life is quite often far from simple, I am glad that what happened on the 24th November 1994 happened. I am a great believer in the saying that 'everything happens for a reason' - I struggled to find that reason for a period, hence why I set up CP Teens UK towards the end of this period, but I feel as if I now understand that reason. Cerebral Palsy makes things just that little bit harder, but it also makes the feeling of accomplishment that little bit better. I love being 'me' and Cerebral Palsy is a part of 'me' - it doesn't change my personality, but it has shaped me as a person and I am thankful for the lessons it has given me, and continues to give me, along the way.
Sally Phillips ended the documentary by saying "There is imperfections in everyone. There's a crack in everything. But, that's how the light gets in. And that's when humanity really shines.". There has been many imperfections in my life as a direct result of having Cerebral Palsy. There has been cracks in my life as a direct result of Cerebral Palsy. But, it is these imperfections and cracks that have made me find alternative ways with CP Teens UK being probably my most 'notable' example. 4 years ago, I had so many cracks in my life. I was about to leave school with nothing other than 3 A Levels. My 'friends' weren't friends. Without blowing my own trumpet, I don't know how I managed to turn everything around. No true friends, no hobbies, no interests, absolutely no confidence at all and a disability that I saw as a 'burden'. Somehow, I found the light, mainly thanks to sport & my idea of CP Teens UK - it is then when everything began to shine.
If only new parents of unborn disabled children could see the light instead of the imperfections and cracks...