This week, my parents sent me a letter and included a photo of me from when I was seven. I think they wanted to make my kids smile seeing their Dad so young. For me, it evoked mixed feelings. I had a great childhood and was very happy. But it was different. At six months old I was separated from my family and sent to a ‘special’ school as the doctors felt it would be best for me, my parents and my older brother and sister.
For these reasons I have always consciously shied away from programmes such as Born to be Different. Better left in the ‘do not disturb’ box. The programme is a Channel 4 documentary series which follows the lives of six disabled children born in the millennium. Series 10 is now showing and following the individuals in their late teens. As expected, the first few series focused on the issue of disability through the eyes of the parents and medical fraternity but certainly the current series is through the lens of the individuals themselves.
Zoe is now in her first year at University and the impact of her disability has put her in the hinterland of needing care (or not) on campus. She has chosen not to. The programme shows her doing her own laundry using her feet and the mechanism she uses to put on her socks. In my experience, I didn’t have a choice as I needed carers. Personally, I had a great experience and the carers helped me to facilitate my independence. I was always told from a young age that independence should not be defined solely by whether you could put on your own socks (I can) but having the choice or getting support from someone else. As I watch, I just hope Zoe has made the right decision and not felt socially pressured to do everything herself.
My life also resonated with Hamish, who at the time of filming, was training for the Paralympics in Tokyo in swimming. When I was at University, I had an outside chance of representing Britain in swimming at the 1992 Barcelona games. The problem (or not!) was I was coming in from a night out at the same time I should have been getting up for training! A different kind of independence.
Emily’s story perfectly represents the messages Purple are trying to convey regarding the employment of disabled people. She is dedicated, motivated and passionate about being a nurse and has a commitment to the hospital where she is on placement, despite living with a highly invasive hidden disability. Zoe coincidently has the same impairment (arthrogryposis) as my childhood best friend, Ian, who I wrote about in my recent blog.
Tragically, the programme also covers the uncomfortable truths of life limiting disabilities as Shelbie reached the end of her life before the age of 20. Again, this sadly resonates in my own life as over half the children in my class at school had passed away before I reached the age of 16, which evoked tough memories again.
As a father of four – all non-disabled – I have watched the episodes through the prism of being both a parent and a disabled person. As a parent, you worry about your kids. My brother once said, ‘When you have kids you never stop worrying, the worries just change as they get older’. As a young disabled person, I didn’t worry about the future. I had dreams, expectations, and left the worrying to my parents. This strong sense comes across in the programme.
I will reply to my parents – by letter – thanking them for doing all the worrying and allowing me to be different, but me.
Chief Executive Officer
21 April 2020