Why my not accepting the label “disabled” doesn’t mean I’m on a crusade. 

Now while I know that I am in fact disabled and live everyday with my disabilities I still don’t necessarily consider myself to be “disabled”. I’m not deluding myself I know I am not able bodied, but having been a fairly “normal” abled bodied person until I was in my late 20’s I still struggle with the label “disabled”. Ok so perhaps normal is exaggerating things to some extent, I have had differing and strange wide ranging health concerns pretty much all of my life, even my childhood disease experience baffled our then GP who said that no one could get chickenpox and mumps together, that is until he saw me and then decided that yes it seems you can. I even had chickenpox and measles twice each which again I was told was extremely rare. So apart from these problems with baffling GP’s for years I grew up running around and doing sport until a condition just before my teens where the then current treatment was considered to be do no sport at all, no exercise and exertion. A few years later when I started doing swimming and a few more exercises again my weight had started going up and I did struggle but I did do various things that I now look back on and wonder if it was in fact me. I even went back to Karate in my 20’s, was training for my black belt and was coaching classes. You see it wasn’t until I hurt my back in my late 20’s that I had to take on the disabled label. In one moment I went from helping at a playscheme, playing games with the children and staff to being in hospital to a spiral down to my wheelchair. I have even gone from being able to self propel a wheelchair to now needing (but not qualifying or being able to afford) a powerchair. I have had to put up with doctors telling me that I was making things up, that I was choosing to not do things and that despite having and doing various rounds of physio I wasn’t trying hard enough. Why anyone would chose a life of struggles and hospital appointment and tests etc and would chose not to be able to do the job they worked really hard against the odds to get a qualification in is beyond me but I still have heard this time after time. But I think that my problems with being considered disabled is more with other people’s perceptions of what they consider that to be rather than the actual disability itself. 

It is slowly changing but people still think of disabled people as people with both severe physical and mental impairments. The comment that I don’t “look disabled” still rings around despite me now being almost full time in a wheelchair.  I thought that people talking to the person pushing you in your chair rather than you had died out, until I had a disability myself. My mum has even started hanging back at checkouts to force people to see me as a real life speaking, thinking, talking person rather than just seeing the wheelchair. It’s not everyone that thinks like this and some shops are definitely better than others, but it’s still there and a lot more than I thought. It’s obviously not just shops either, I’ve gone past people in my scooter or wheelchair and overheard “It’s nice that they let people like that out for the day now” or “Oh bless look at that disabled person, it must be so hard” and had to look around before realising that they must be talking about me. It’s just not how I see myself or the first thing that I want to be known for, a lot of people just still see disabled first and person second. The “disabled” label almost hangs around your neck and I just don’t wear it well. When I am actually asleep, and I know it isn’t that often, and dream I am walking and running about I am not in my wheelchair or using walking sticks. I still see myself how I was before my conditions became so bad that I needed to use wheelchairs etc, I wake up and the reality of my pain and splints and walking sticks are still there. They’ve not disappeared overnight, obviously, but there again they’re not all I ever think about. I have the same likes and dislikes that I did before my disability, I’ve just had to alter how I do some of them.
So I think what I’m trying to say is that while I know that I will always have to complete forms and tick the “disabled” box, in my head I consider myself a person first and then a person with a disability rather than just “disabled”. I don’t want to start a crusade, I don’t disapprove of the term “disabled” and wouldn’t admonish someone who referred to me as “disabled”; but I guess I will always feel that I am not just “disabled” I am a whole lot more too.