I’m a lifelong disabled woman. My condition isn’t degenerative but the face I present to the world has changed significantly throughout my life. I have a lot of experiences of unwanted reactions (both physical and verbal.) and they really vary depending on which of my mobility aids I’m using.
As a child I walked and wobbled short distances in public with a lot of help and encouragement from my parents. I fell a lot but picked myself up again – and I was proud of myself for learning to do so. In my late childhood and teen years I still walked sometimes in public but as my independence grew and the distances I wanted to travel got longer I used my manual wheelchair more. By the time I was at university I basically never walked in public. I didn’t want to have to deal with all the reactions being both ambulatory and a wheelchair user brought. Four years later as a new graduate I had to buy my first powerchair. I really didn’t want to but living alone in a rural village with no accessible shop and being unable to drive I didn’t have a choice. Over a decade after buying that powerchair I now avoid going out in public in my manual as I feel safer and better equipped to cope with the public when I’ve got a battery and motors to help me escape.
In a way the place I notice people’s reactions to me as a disabled person most is in the supermarket.
When I’ve walked in the supermarket as a child, people wanted to tell us that there are wheelchairs there if that’s easier for me and then not understood when we said “I’ve got a wheelchair but today I’m walking.”
As a teen shopping in my chair some weeks and walking others, staff commented on a perceived improvement or deterioration in my condition that didn’t actually exist. They even offered to pray for me!
A skill I worked hard to gain was the ability to wheel myself long distances in my manual wheelchair. At uni I’d go round the supermarket with a friend. I’d wheel myself and they’d push the trolley. People would try to take that trolley away and give my friend a wheelchair trolley so it could be attached to me and I wouldn’t have to “struggle” pushing myself. But I hated to be pushed. And those so-called wheelchair accessible trolleys couldn’t be attached to the one I had (a lightweight one without armrests). That was around the time that supermarkets started offering a scooter for customer use so that would be suggested to make it easier. Those strangers meant well we would be the bad guys for saying no and being frustrated because having to take the time to stop and justify my choices actually made our shopping trip harder (and longer, too).
Nowadays I’m a powerchair user. I zip round the supermarket every couple of days. People ask why I don’t shop online, and perhaps go to the co-op or corner shop to get a “few bits to top up.” But I pass there on my way home each day. The Co-Op is further away and the fabled corner shop doesn’t exist
I went round in a loan wheelchair the other day when mine was being repaired. I knew if I broke the loan one I’d be liable for the cost of repair on top of the cost of repairing mine. I was petrified someone was going to try to help me and break it.
Because a few months ago the supervisor stepped right in front of me and grabbed my basket off my lap. She did it so suddenly I couldn’t stop and hit her ankle. This was my fault, you understand. Even though she had got in my way with no warning to force unwanted help on me, I was to blame.
And a week or two after that incident I was unloading my basket onto the checkout when the operator stood up and grabbed it off my lap. As she did so she caught the joystick of my chair and knocked it. My chair hit the checkout. It was undamaged that time but I’m scared it will happen again.