I was attracted to helping with the project as I have worked in the disability area for over fifteen years in a variety of roles.
My own mother had a hidden disability, epilepsy, which was not well controlled when she was growing up, nor understood. She developed epilepsy when she was fifteen, and it was only really brought under control when she was in her late seventies.
Medications were a bit hit and miss, and her life was largely unpredictable when she was younger and when my sister and I were growing up.
We used to chat with her neurologist about the effect of some foods on epilepsy, but in those days, there was not much scientific proof that there was a connection between seizures and certain foods. It was tricky trying to get doctors to understand this phenomenon, but I think anyone with a disability or their close family members will know what I mean.
I watched my mother blossom as new medications decreased the symptoms of epilepsy and how much more confident she was when socialising. My mother also suffered life-threatening allergies to foods and some medications, but it never stopped her from being a wonderful mother. And I think it taught us to have empathy for others. My mother used to say to us, ‘never judge a book by its cover,’ and ‘walk a mile in my shoes.’ She also talked to us about never feeling sorry for ourselves. Her words were, ‘I cried because I had no shoes, until I saw a man who had no feet.’ In other words, don’t feel sorry for yourself, because there are people worse off than you.
My mother was a fabulous cook, and a great storyteller who passed on the family history. All my cousins loved to come and stay for the school holidays, because she was warm and caring, and fun.
My mother is largely the reason I wanted to be a part of this book, because I know just what a difference it can make if readers can understand more about disabilities, and what it’s like to have a family or live in a society that constantly rejects people with a disability.
I am currently studying for a Masters in Disability Policy Process at Flinders Uni and would like to help make some positive changes to our system around disability. I think this book will be a great learning tool for anyone who is involved with someone with a disability, be it a parent, child, teacher, lecturer or support worker. It will also help those with a disability to know that they are not alone and by reading other people’s stories, they can find the strength and encouragement to know they can design their goals and reach them.
Don’t be afraid to ask for help. We all do!
Return to the list of Blogs.