So, I've decided to take part in National blog post month. Wish me luck. I'll try and post something even if brief each day. It will all be about chronic illness, neurodiversity and maybe some queer theory thrown in. Here goes! (WHOOPS! That failed....)
People are often seem a little confused that I use a wheelchair. Like most wheelchair users I often get asked by total strangers “what happened” to me. The assumption being that I've had some sort of interesting accident resulting in paralysis. I don't generally bother answering these sorts of questions (I've not yet remembered to say “shark attack”). It gets more complicated when it's people I know well enough to answer though. Every time someone asks, I find myself sighing. “It's complicated”. My emotive response often leads people to thinking they've offended me, but that's seldom the case...I just don't know how to answer. “an illness – still working on a diagnosis”, “Maybe M.E” followed by “severe M.E” (to try and justify myself) and “ME is more diverse than you might imagine” (to try and put off any stories about someone's “friend who had M.E”).
It's now becoming more well known that people use wheelchairs for a variety of mobility needs, and that many (most) wheelchair users are able to walk at least a little. However, I've still experienced much prejudice by the medical and social care profession as well as from family and friends. So, whilst being cautious not to justify myself, I'm going to attempt to share my reasons for using wheelchairs.
So why do I use a wheelchair?
About 2 years ago my health started declining. My brain was causing some pretty weird symptoms, the most scary of which related to my ability to walk. The room span, any slight change of light effected my spacial awareness and my legs would do different things to what I asked. One day I woke up with a limp, then quickly this progressed to both legs. Walking became slow, tedious and took a huge amount of energy, energy which was already limited by my illness. Every time I left the house I'd end up stuck in bed for days, barely able to move for hours at a time and needing to crawl to the toilet and living off cereal bars stashed down the side of my bed. My body didn't seem to tolerate being upright in any way. The previously 5 minute walk to the tube station started taking half an hour and before I knew it I started needing to take the bus just to get to there, then even getting to the bus stop became impossible. In June I experienced my first severe periodic paralysis episode. I told a friend who told me to call for an ambulance. I did as I was told though regret it to this day. A doctor came for a short period of time and then dismissed my symptoms. I was then repeatedly asked if I could “walk properly yet” before being discharged with no offer of transport home. I didn't even have my walking stick with me. The nearest cash point was not working so I had to force myself further away from the hospital. I had to cancel my weeks plans and stay in bed, all because I tried to do the best thing for my health.
I decided to get an electric wheelchair after realising the only way I would be able to attend a music festival was if I used one. It was cheaper to buy on ebay (well, until the batteries stopped working!) than to rent, so I made an investment,planning to use it for “long” distances. I came back from the festival very unwell, but had still managed to do it, something which would never have been possible without the chair. I quickly realised that if I was to keep my health in any way stable I would need to use the wheelchair at all times outside my home.
My wheelchair use then had to increase after a severe UTI caused took away all walking ability. My ability to put one foot in front of the other has returned and has steadily improved thanks to more adequate care (though remains more impaired comparatively), however, my wheelchair use now remains near full time due to the extreme impact that standing upright has on my health. Until this is resolved, any work on my gait is of little use. Currently, it remains better for my health to use a manual wheelchair indoors in order to “pace” my energy levels. Also, in my opinion being mobile around the home in whatever capacity is far better than staying chained to the sofa.
Reading this back, my decisions to use a wheelchair seem pretty fair, however my decision has repeatedly been met with resistance from the medical profession and used against me. Rather than recognising my walking problems, doctors decide that they're not bad enough for me to use a wheelchair. I've experienced relapses after taking a “specialist”'s advice on this issue. More recently I was denied access to social care and treated like a fraud after a social worker spread lies about me within a hospital telling staff that “If he really needed a wheelchair, the nhs would have provided one”. This lead to an extended stay in hospital as I tried to prove I would not be safe without adequate care provision. Even since leaving hospital I've had to repeatedly argue that my illness is not psychological, and recently won the fight for a wheelchair service referral after a physiotherapist wrote an inaccurate report leading to refusal of referral (she helped me transfer in to my wheelchair, left me stranded without my controller and then wrote a report declaring me safe to go home and not needing to use a wheelchair). All of this has understandable had an impact on my mental health.
There is a general attitude that disabled people need to “do their best”, “overcome obstacles”, “work towards independence”, “avoid deconditioning” and try and resist wheelchair use for as long as possible..but I think for a lot of people, the medical profession has it completely wrong. When it comes to chronic illness, sometimes accepting as much help as you can is the only way forward to balancing a baseline of health whilst still retaining some control and quality of life. Many of those resisting wheelchair use remain bed bound or housebound. How can that be better for their health than getting out (within their own limits) and remaining partially mobile?
So, no, I have no badge of honour, no moving story of overcoming illness and disability but I didn't give up either. Wheelchair use may have been a choice for me, but really, it was common sense.
