I have M.E. and I’ve been using a wheelchair for fifteen years. I don’t need it all the time, I don’t actually like using it as I get very stressed, the loss of autonomy really gets to me and the crowds of people looming above me makes me panicky.
However, if there is any prolonged walking involved or I am especially ill/exhausted then I have to use it. Now my legs do work, so I can get out of the wheelchair if a kerb proves tricky or there are a couple of steps. I can also get out to walk around a shop for a couple of minutes or walk to a table in a restaurant. Now this is where the issue lies. When I do get out of my wheelchair for any of these reasons I get ‘the look’.
The look that tells me I am regarded as a faker, or lazy and look at my poor husband having to push that overweight lady in a wheelchair when she can walk. I see the surprise on people’s faces when I turn up for an event when previously they had seen me standing. If I go to an event, if there is seating around me I am confident with standing as I can sit down when I feel like it to recover, then stand up again.
If I know there is going to be no seating I will go in my wheelchair as I need to be secure about my surroundings and my ability to cope.
The other thing is when my husband does try to negotiate a tricky kerb, just as I’m about to get out of the wheelchair to make it easier a well wisher comes along to help and lifts the wheelchair. Of course I am grateful but also mortified and I’m too scared then to get out of the wheelchair in case that person sees me and wonders what just happened and he had to lift the lady who could walk!!
I need the wheelchair, just not all the time. I can’t use a mobility scooter as I can’t concentrate on navigating on and it would tire me out being in charge of it. I need to always have someone with me looking after me and sometimes they have to push me in a wheelchair.
The world isn’t black and white. It isn’t divided into wheelchair users and non wheelchair users. There are the occasional wheelchairs and please remember that there is probably a very good reason why that person needs a wheelchair at all before you judge.
Writer Debbie Deboo is a photographer and co-founder of the organisation Chronically Fabulous.