There’s something about awkwardness and disability that seem
to be intrinsically linked. Nobody likes awkward situations but when you have a
disability it’s nigh on impossible to avoid. The majority of the times I leave
my house I’ll be faced with an uncomfortable situation.
I’m a powerchair user but I also rock a set of crutches, and
for some reason that is very difficult for some people to comprehend. Living
with chronic pain means that my condition varies, every day I’m in pain but
some days are a lot worse than others. I use crutches around the house and a
powerchair outdoors, so mostly strangers see me in a chair. When I’m out and
about, I get stiff, sore, my muscles spasm, my body aches and I need to stand
up from my chair to stretch; this is where the problem lies. Not with me,
although I’m in a lot of pain and that’s a problem in itself, but with the
public. The second my footplate is raised and I’m rising from my chair as if a
deity from above has reached down and pulled me to my feet, all eyes are on me.
You can almost hear their necks snap as they turn to give all their attention
to the ‘miracle’ that has just taken place before them.
No, I wasn’t touched by the hand of god. No, I haven’t
suddenly been cured. My legs work; they just really hurt and don’t work as well
as I’d like them to. As a matter of fact, everything hurts. For me, my chronic
pain is so widespread that even my fingers are painful. That’s why I use a
powerchair; to help me manage the pain. If you didn’t know that people use
wheelchairs for chronic pain and for a variety of other reasons, here’s me
issuing my public service announcement.
I guess there are a lot of archaic attitudes when it comes
to what it means to use a wheelchair, as some people believe that all users are
incapable of walking. This makes it really difficult for people like me. I
don’t want to get up out of my wheelchair and stretch to ease some of the pain because
I know there’ll be eyes on me, judging me, wondering whether I’m faking my
disability. I would rather suffer in my chair, than get up, take a few steps
and hear audible gasps from strangers. If I’m desperate to move around and
fearful of how my ‘chair ascension’ will look to others, I scope out a disabled
toilet and use that as a safe place to stand, stretch and reposition.
Should I have to do that? Why are people so shocked that a
wheelchair user can stand and/or walk? Why is our society constantly
insinuating that wheelchair users all require chairs for the same reason? We
all have different abilities, different conditions. Some people use wheelchairs
full-time and some people don’t. But by making it obvious that you’re looking,
being shocked, gasping, glaring, taking pictures, making negative comments
towards those of us that aren’t full-time users is making it really difficult
for us to be ourselves, be comfortable and to change the way people think.
I want the stigma and awkwardness surrounding standing up
from a wheelchair to dissipate. I want people to stop making memes about
miracles, and accusing people of cheating the system. In an ideal world I’d
stand up from my chair and I wouldn’t receive a second glance.
Furthermore, when I’m using my crutches and there’s clearly
no cast on my foot, please don’t ask me, ‘what have you done to your leg?’ It
only results in an uncomfortable stand-off with me explaining, ‘nothing
recently, I’m disabled.’ Why I’m using crutches, splints, a wheelchair is my
business, and although I’m quite open to answering questions (as long as they
come from a good place), a lot of other people might be offended, because at
the end of the day it’s a very personal question to ask someone you’ve never
met before.
All I want is a bit of thought before commenting or staring.
If you’ve never seen a wheelchair user stand, don’t sensationalise it, it’s not
affecting your life. Help me get the word out that being in a wheelchair
doesn’t mean the same for every user. Not everyone is paralysed. Not everyone unable
to walk.
It's really not a big deal. I can stand up from my wheelchair but that doesn't mean my disability is any less valid. Trust me, if a miracle occurred, I'd let you know.
Disability is such a grey area and unfortunately, so many people see it as black and white.
ReplyDeleteI don't know if I just have a good BS filter or if I'm just rubbish at paying attention but i don't tend to notice people. But those who are with me see it.
When I was in Copenhagen earlier this year I got quite a few looks. There were times I got out and my friend carried my wheelchair down a kerb/step or across cobbles because it was simply the easiest option. At one point my friend joked he should tip me into a fountain and I should stand up and shout "it's a miracle" because of the looks some people gave me.
It doesn't help when a programme like the last leg take the piss out of athletes getting up from wheelchairs. It's definitely something people need education on.
And it's hard when it's an invisible illness. People can't appreciate my body is shit at making energy. So while I may be able to walk short distances and I can even manage some steps, being on my feet for an entire trip out is just not doable.
And people are far too quick to judge and make assumptions which are often incorrect. Education is definitely vital.
DeleteOh my, if one more person asks me what i've done to my leg when walking with crutches et al!! It's so awkward!
ReplyDeleteIt really is.
DeleteGreat post and I agree people are far too quick to judge when they don't know the whole story.
ReplyDeleteI've been having issues as a spoonie with an invisible illness but your posts help me and make me realise I'm not the bad guy.
Fiona xx
Aww thank you x
DeleteIt is perhaps because of your age, if they see someone older they might accept that the use of wheelchair is not because of some incapability to walk but because walking is a lot of excursion. They presume the reason you are wheelchair bound is because you are paraplegic. I work with people with CP and paraplegia and its so ranging, even our student that walks around on the house use's a wheelchair for long distances. and many that use a wheelchair daily because they can not walk, can stand up to transfer and are able to walk with a walking frame, although we have students that can not stand at all and require a sling and hoist too this is the most server few. keeping doing your thing sarah and ignore then, people need to educate themselves more. The Paralympics proves how many diffrent conditions there are and how many people with them, appear 'normal' and are able to walk ect
ReplyDeleteI agree, she definitely plays a crucial role x
DeleteGreat blog. Those who judge need to take note of this x
ReplyDeleteThank you x
DeleteOmg this post!! I've been on crutches for 18 months now as I'm suffering with a bad knee injury and I use a wheelchair when I go out, and I take my crutches with me also in case I have to stand up for a minute to just stretch my body, and people look at me like I'm lying about needing to use the wheelchair. Or when I'm having a good day, I'll just use my crutches and all people do is 'aww what have you done to your leg?' I've had enough of explaining myself 100 times a day! But yeah, people shouldn't judge, I'll decide whether I need a wheelchair or not! I've developed chronic pain in the last year too, so the wheelchair is very much needed on most days!
ReplyDeleteToo many people are too quick to make assumptions x
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