My step-daughter, Snail, is in a wheelchair. I’ve been Snail’s stepmum since I started living with her when she was 4, and she’s 11 now. Snail has cerebral palsy and epilepsy caused by pachygyria. She can’t walk unaided, and needs a chair. She has moderate to severe physical and intellectual disabilities. She’s also filled with joy, mischief, and awesomeness.
We try our best as a family not to be limited by our wheelchair. We’ve taken it to concerts, to inconvenient landmarks (the Sydney Opera House has only one lift in the backstage area for wheelchair access!), on bushwalks, to the beach, and on picnics. After all, it’s not our Snail’s fault that so much of the world is hard for her to access! It’s our job to try and make this of as little impact on her and our family’s experience as we can.
Wheelchairs can be poignant
They can be sad
They can get you places
Or stop you from getting places
They can be fun
They can be a pain for your brother
They represent what is wrong. Here is Snail having a seizure at the beach.
That was a hard day. But to be honest about our experiences, I want to include the picture here. It’s why I took it at the time. Because all of this is part of our lives. We can’t look away. We live it every day.
So, here’s to Snail’s chair. We hate it and we love it. We wish more than anything she didn’t need it, but given that she does, we’re so glad to have it.