Disability affects families in different ways. The following stories show not only the challenges that disability presents, but also how families have found a way to make it all work.
Lower limb amputee, Sonia Sanghani has two children who have grown used to her disability.
I became an amputee due to an accident, so the first phase of that was certainly difficult for the whole family. I was lucky because with their support, all I had to master at that stage were the basics – how to manage a home, drive, do things with friends and family, go shopping, go to work etc. Everything else was managed by family members around me.
People around you will always seek to protect and care for you, especially when it’s time to go back to work. All those years ago it was more acceptable to find a ‘safe, sitting down’ job rather than standing up and dashing about all day. So there is plenty of potential for things to break down between you and your family if you actually enjoyed standing up and dashing about and want to keep doing that, even though you’re now limbless.
When did your children start to identify you as a disabled person?
My children grew up knowing I was disabled so they faced it in stages when things cropped up, such as why my legs were metal and plastic and theirs weren’t etc. It was important to us as a family to let them know as soon as we could so they felt they could share their thoughts about such matters, especially if it came up amongst their school friends. The topic will come up more than once too. It’s not a case of ‘conversation had, job done’ – they tend to go away, think about it and, as long as you show you are still open to talking about it, they will ask some more.
How do you look back generally on how your disability has affected your family?
It has certainly opened all of our eyes to the things that we take for granted. Initially, when the children were younger, it gave me a bit of an excuse to slow everything down, rather than try to fit too much into our schedule. After all, nappy time and feeding time had to take place no matter what we thought we were going to do that day. Unfortunately, the children grew up really quickly so I couldn’t use that excuse any more. A lot of tears and tantrums have taken place, perhaps because they have wanted me to be someone or something else but those are things that a lot of families go through.
Was there ever a moment you could identify when your children understood your disability?
No, not even after all these years. They still think they can 3D print me some legs or stitch the nerves and blood vessels on to a donor’s legs. I think they might even pursue careers in medicine and ask me to be their guinea pig when they’re older.
Sonia Sanghani is the author of ‘Stumps and Cranks – An Introduction to Amputee Cycling’ published by Meyer & Meyer Sport. Visit: www.stumpsandcranks.co.uk