This blog post has been inspired by this great mumsnet article (not a place I frequent usually) about how a wheelchair user feels she has to ‘perform’ her disability.
When getting out of my wheelchair to climb into the car I have two signature moves. One is to stand up and to loudly declare to all who can hear “it’s a miracle!” The other is to steer my chair level with the seat and move my bum over as if my legs are paralysed. Which one I choose depends whether I’m in a belligerent mood, or a vulnerable one.
I can stand, just not for long, and I can walk, just not very far. I need to use my wheelchair in order to have a hope of going anywhere beyond my own home. Limited as my mobility is, though, I am still made to feel like a con artist for using a wheelchair. You see, society says that to use a wheelchair you must have paralysis. The only exceptions to this rule are people with broken limbs and the elderly. The movement of limbs is a way to sort the inspirational cripple from the thieving scrounger.
I completely understand this and it is why I have made the decision to say I am a part-time wheelchair user in my social media profiles – to help raise awareness. Not all wheelchair users are paralysed. I can walk short distances on hard surfaces, however it is hard going, I walk like I am drunk, I am very slow and also my legs can give way underneath me (even with crutches) – increasing the potential for further damage to my body, which at the least will be very slow healing and worst could easily result in permanent damage. It is not very practical at all, however I try to do it for ten minutes each day, partly as it is important to get regular movement into my day and partly to help slow further deterioration.
I also get immense joy from walking my dog, but I have to drive him to somewhere were there is soft ground and I walk with two hiking poles and I take it easy. At the moment the distance that I can walk is slowly increasing, at Christmas I could just about make it to the first bench and then have to sit for half an hour while I watch my dog run around and then stagger back again. That has very gradually increased a little bit at a time, but my rate of progress is nowhere near what it used to be, and I can just about manage half an hour. Slowly. This may increase over time, or it may stay the same, or get worse. Going into the woods is also a form of therapy for me, it really feeds my soul to be in the countryside plus seeing my dog bounce and run around always makes me laugh.
Both of these, plus the daily yoga and swimming as much as I can is both physiotherapy -trying to keep as much movement, fitness and ability in my body as I can. However it comes at a price – they all leave me little muscular strength to walk for the rest of the day, plus of course I can only ever walk slowly, drunkenly with a risk of falling at the best of times.
So I use a wheelchair for everything else. It means that I can go out without fear of collapse. It means I look more professional. Also walking on hard surfaces takes up a huge amount of mental energy just to stay upright, which means I am not completely focused on the work that I need to do afterwards. But yes, I can put my wheelchair in the car and then walk, albeit unsteadily, to the front. It means I can wheel up to the poolside and then walk the few steps into the pool. Which causes people to really stare at me, which I hate. Do people realise how much emtional strength it takes to sit in a wheelchair in a swimming costume (which let’s face it is not the most flattering of positions) and then to have them stare at me, or even worse stare and me and not move out of the way of the chair. It is horrible.
And I am really worried that with all the media rhetoric about ‘benefit scroungers’ that people will start giving me abuse about the fact that some days I can walk out of the house the few steps to the car looking completely normal, sometimes wheeling my chair to the car (I use it as walking frame) and sometimes using crutches or even just a stick on good days.
The other day at yoga a woman gave me a really evil stare after I staggered out of the class on my crutches, having a really tough time of it (sometimes I think it would be easier to wheel into yoga as well). But of course she sees me doing great yoga poses and doesn’t realise that:
a) I have been practising yoga on and off for 20 years now
b) I have a daily yoga practice as part of staying well and
c) the reason why I can do yoga poses so well is the exact same reason I can’t walk properly – my collagen is faulty, so I am really flexible.
She also probably doesn’t see me not doing some poses as I know they will make it even harder to walk (pidgeon for more than a few minutes), or sitting down if the teacher is demonstrating. Standing upright in asanas takes a huge amount of focus, mental and physical energy. She probably just sees someone who she thinks is a benefit fraud, because how can I do yoga and need crutches? She probably doesn’t know about the paralysed yoga teacher Matthew Sanford or how yoga increases core strength – vital for me to stay well. Or of course she might have been thinking about the huge mess at home that she needed to tidy up for all I know. A mindfulness based thought process would not attach meaning to her look, but I am human and it is something I worry about.
I use a wheelchair to get into band because otherwise I will hurt my hand on my crutches, or use up so much energy in getting there that I wouldn’t be able to play afterwards. It is hard work playing in a band, both physically and mentally.
So yes, I use a wheelchair and I can swim, do yoga and walk my dog on soft ground. Some days I will lurch about on crutches, other days I can walk the few steps to my car fine. But if I am out for any length of time (more than 5 minutes) I will use my wheelchair. So therefore I am a part time wheelchair user.