How much longer do I have to grin and smile when someone says something completely ridiculous to me, when is it appropriate for me to yell ‘Go fuck yourself mate’ and give them a loud lecture about how unamusing their wheelchair joke is and that just because their old doesn’t make them the ‘only cripple in the village’!
Being in a wheelchair now for 4 years with a progressive muscle wasting disease that has so far affected my legs, feet and arms (sadly for people locally not my mouth) affecting my ability to walk, stand for longer than 30 seconds, raise my arms above my head, dress in anytime shorter than 30minutes, raise a cup to my mouth without lowering my head and using a toilet anywhere that isn’t my home.
So I think I have earned the right to have a label such as ‘disabled’ and some people get all uppity and get their panties in a bunch because they don’t want a label, I say embrace your label my fellow Crip’s because the government clearly couldn’t give a rats arse about us so take advantage of all the brilliant things available for free or at discount because of said label.
Because quite frankly we deserve the freebies, because there is a lot of things in life we have to put up with when you have any disability. Which can range from
- Old people staring, because you out-disabled them by being far younger.
- The ‘slow down’ and ‘you nearly ran me over’ joke when in a wheelchair, FYI its old, boring and just makes us want to punch you in the junk so give it up!
- ‘Cor, I wish I had a wheelchair’, yes I’m sure you do and now you mention it sitting in this all day, watching my child run about, swim and putting up
with shit access to the place I’d like to go are really fun now you mention it!
- Dirty looks when using a blue badge, because we don’t fit the criteria you imagine we should be in.
- And the thing that makes me want to poke myself in the eyeballs, with porcupine spikes……BENEFIT THEIVES. You know the ones, had a bit of an achy arm or leg and decided they would play on that till they die, so they can avoid working, take a load of opiates, get a disability vehicle and drive their 6 children to the betting shop and local spar to get some strong bow. You are the people who make it harder, for people who need genuine help.
- My personal favourite, can’t you walk?. Now I know you freaky walkers might say ‘Well it’s valid you might be able to walk’. But come on, why would I be in an electric wheelchair if I could walk.
- And the worst of all ‘The Conservatives ’……..need I say more.
So annoyances aside, onto the positives when you are a fully-fledged member of the crip society we have some marvellous things at our disposable such as
- Free Bus passes, so we can go to the local town and ride amongst the local nutters, paedophiles and old age pensioners, who will inevitably end up hating you because your wheelchair is taking up their trolley spot.
- Free carer ticket for gig’s at The o2 Arena and other venues. And I don’t actually have any sarcastic or disdainful comments either, the toilets have amazing access with hoists, enough space for a wheelchair that imitates a tank and the staff couldn’t be more helpful and the parking is only a short roll away.
- Motability – It helps with socialising, getting to work and feeling less isolated, giving us the option for independence. With Wheelchair accessible vehicles, Drive from vehicles and a whole array of controls to make life easier. Unless your one of the people who have been demonised by the Tories for daring to want the freedom like any other normal person. Then you have my condolences and rest assured I did not vote for the conservatives, I’d rather end up on chocolate starfish duty for Tony Blair.
At every step of my wheelchair constitutional, there has been someone that has said something completely ridiculous or insulting, so insulting that on one occasion it left me and my dad gawping, speechless for words.
I had been hobbling around my new home on crutches, trying to tidy up my 3 year olds clothes, shoes and general child detritus. When I tripped over a shoe, twisted my ankle and because I suffer with drop foot, rather than lift my other foot, my toes just crumpled up and I fell into a heap on the floor. I managed to drag myself into the living room and was lifted and bundled onto the sofa. The pain was unbearable, I was shivering due to the shock and was incapable of weight bearing on my foot.
So after a few days off insisting my foot was just bruised and I needed to rest, my occupational therapist came round and told me I had to see a doctor, because the swelling had not subsided and it was likely I had fractured my foot.
My OT was right and I ended up in hospital having x-rays which confirmed I had shattered my big toe in 3 places. So I was told to go and have a cast put on, which I was not happy about because a cast makes you bear weight normally so I had to bend my knee. Which I never did, because of the muscle loss so I always locked my knees. Nobody listened and was refused the right to leave without a cast, so I did what any normal person would do, wheel down to the car park at rapid speed and rip the cast in half and removed it myself.
After a few week’s I went to see a consultant to see how my foot was healing and he informed me that because I had removed my cast it meant the bone wouldn’t have healed straight so I may be prone to arthritis but it wasn’t a major issue because of my Muscular Dystrophy I wouldn’t be able to lunge anyway!!! while saying this broke into full lunge (like joey in Friends when he is wearing all of Chandlers clothes) and that I won’t be needing the full movement to run!!
I was speechless, I live with this pal you don’t have too spell it out that I’ll never walk, run or lunge properly again. And it took him a full 3minutes before he realised the word vomit that he was spewing and then started to stumble nervously and disappeared behind a curtain.
I don’t know how anybody else feels about having a physical disability but I find the most mammoth hurdle that I face is not in that I can’t walk, run or unable to do something on a whim, it’s the mental anguish that I face. The loneliness during the colder months when I have no choice but to sit with my own thoughts, with only 4 walls as a friend, feeling ostracised because I have no transport to be included in gatherings or the fact I can’t get into anybody else house due to access. And similarly, in the summer I cannot travel far because I struggle massively with transferring onto the toilet (and nobody wants to risk the possibility of soiling themselves) so I’m left feeling either guilty that I cannot take my daughter out anywhere or that I’m missing out because she has been take out with somebody else.
And missing out on doing something so simple like, looking to the future. Something that I avoid like the plague because for me the future brings, decreased mobility and the inevitable need for a carer. It’s not good for one’s emotional wellbeing, so before you say to someone ‘Chin up look to the future’, assess if it’s appropriate to do so, before you go all Dr Phil. And remember just because someone has a disability, whether its visible or not were still people and have feelings. Don’t stare at someone’s wheelchair or legs (which I get frequently), I know personally I would rather you just ask the question you are wondering.
Because sometimes comedy gold can come from it like being asked ‘ Will you shrink’? the answer is no I won’t, my muscles are wasting not my bones! ……If we don’t laugh, what is there left to do?