What if we viewed lived experience as an asset? As an asset of professional, economic,…
International Wheelchair Day
1st March 2020
Today it’s International Wheelchair Day and it celebrates the life-enhancing and life-changing benefits of having the right wheelchair, and celebrating the individuals who rely upon this piece of equipment to mobilise and live their lives to the fullest.
I’ve been a full time wheelchair user since I was 14. Prior to that I was able to walk, but it was difficult, my muscles were weak, it was exhausting, I had little stamina, and it was a painful exertion which got worse the older I got. I walked late and pretty much refused to move and was in a buggy longer and needed it more than most children, but eventually I got there and went to school and lived a “normal “ – to some degree – life, struggling all the time trying to keep up with my peers. The older I became the harder mobilising was, and I started having regular physiotherapy from age 10. By age 14 I was struggling so much that, a few months after my 14th birthday, I became a full time wheelchair user. At this point I could, with an awful lot of help and support, just about talk to the toilet and back, but aside from that I was fully dependent on my wheelchair, by age 16 I could only take 2-3 steps, from age 17 I could only weight-bear long enough to transfer, and by age 22 I was completely unable to weight-bear at all and have been dependent on hoisting ever since.
I originally had an NHS-provided manual wheelchair to get me from A to B. It wasn’t particularly suitable but we were not cognisant of the range of different wheelchairs out there and what they could do. By age 15 I was completely bed bound and only left the house for hospital appointments, and we often had to find somewhere at the hospital for me to lay down as I used to get so dizzy and drained sat upright that I couldn’t function and was barely coherent. I did my GCSEs (high school exams) at home in my bed, and was determined to do my A Levels but there wasn’t an option for home tuition to continue and so we made plans for me to attend college for 1 hour per day – it was as long as I could feasibly sit up for without ending up completely incoherent – to do 3 A Levels in the sciences as I still wanted a career in medicine of some kind. At this point, knowing I was about to start at college in the September, we asked wheelchair services for a powerchair assessment. We were told at the time that there was an 18 month waiting list for a powerchair, and that they weren’t able to even assess me at that point as our house wasn’t accessible nor was it possible to ramp it. We were moving to a bungalow which eventually happened on 1st September 2010, the day before college started, so we had to sit until then. When we moved in, we contacted wheelchair services to find out again, the waiting list for a powerchair was 18 months and once again, even though we were now in a bungalow, because it didn’t have permanent ramp access (our offer of finding funding for temporary ramps was rejected as a viable solution) they couldn’t add me to the waiting list for an assessment, once we had the permanent ramps I could go on the list. They told us to apply to the council for permanent ramps which we did, only to find out the budgets were spent for over 3 years and so I couldn’t be considered for ramps for another 3+ years. So we were stuck. No powerchair assessment without ramps, but no ramps would even be considered for over 3 years until they had sufficient funding again. So, we decided to fundraise. We asked the wheelchair services OT what wheelchair he would recommend for my needs and he told us about the Salsa M. We arranged a trial of the Salsa M and it was perfect, so we decided to fundraise for a Salsa M with electric tilt-in-space and seat riser. The wheelchair rep and OT advised us to consider backrest recline and leg elevation but put off by the additional cost and not understanding the benefits, we fundraised for only tilt and seat riser. We raised the £8,600 for the Salsa M within a few months, and I received the powerchair in March 2011. The only issue now, other than not yet having proper access into the house (long story) was that I had no wheelchair accessible vehicle to get it to college, and the wheelchair taxi we used didn’t have enough entry height for the Salsa M (I’m 6ft 1 fall) even if I ducked, tilted and took the headrest off, so I had to go to college in my manual wheelchair still. We made the application to Motability for the wheelchair accessible vehicle as soon as we ordered the Salsa M, and the van eventually came in May. Unfortunately I had to pull out of college in April, I was too poorly and unstable medically and spending most of my time in hospital, so I deferred college. I was able to use my powerchair out on rare dog walks and rare outings within the local area, and further afield once we had the WAV, but I was now so poorly I could barely sit up for an hour a week, let alone every day. However, when I was able to use my powerchair, I had total freedom of movement. I could independently move around the house, buildings, hospitals, outdoors and so on. I could tilt my wheelchair whenever I felt dizzy or lightheaded. I could raise the seat riser up so I could talk to people at eye height. It was everything I wanted and more. I had freedom, control over where I went and when, and choice over my position. I had independent mobility back, when in my Salsa M powerchair.
Over the next few years, my needs increasingly changed as my underlying condition progressed. In 2013 we got a puppy, Molly, and having been almost completely bed bound for the last 5 years, I pushed my body so hard with physio and suffered the consequences and began sitting up every day so I could walk Molly, do her training, play with her, take her to weekly obedience classes and so on. The wheelchair wasn’t really suitable and sitting up was excruciatingly painful, no matter what cushions and adaptations we used, and tilt-in-space wasn’t enough to manage my autonomic neuropathy-induced chronic hypotension and the additional sudden drops in blood pressure (from an already low starting point) and I was struggling so much. I often ended up in tears from sitting up, feeling so unwell and in such severe pain. It started to limit how long and how often I could sit up again.
At the end of 2014 we found out more about the leg elevation element of some powerchairs and how important leg elevation and backrest recline in addition to tilt-in-space is for people like me, and we sourced a low cost chair with electric tilt, recline and manual leg elevation. The chair did mean I could sit up more and for longer, but the chair was completely unsuitable. Not designed for someone of my height, little to no way of customising the chair, it couldn’t drive on grass, and any slight hill or incline and the sensor on the chair would stop it dead, refusing to allow me to move, the company kept trying to adjust the sensor but to no avail. It wouldn’t even drive up the ramp into my car, which was a very slight incline. It wasn’t working. I ended up doing loads of research, and found a chair I thought would be perfect. And, as it turns out, it would be perfect, and it would transform my life.
I found the wheelchair manufacturing company Permobil and their chair the F5 Corpus, which is a top-of-the-range, highly customisable, expensive (but worth it) powerchair which was also more suitable for tall individuals, and I organised a demonstration. The chair couldn’t have been more perfect: for the first time, I was actually comfortable in a wheelchair. It had all the features I wanted and needed, could be custom built to my own specifications, and Permobil were committed to making me a chair that wasn’t just good, but was perfect. The Permobil rep I had, Andy, took time to understand me, what I needed, what I wanted, what would improve my life and worked with me to build me the right chair. The only issue was, the cost: £22,500 (2015). How on earth was I going to raise that sum of money?! I set about fundraising and received lots of donations and support from a few charities, and I was able to purchase the wheelchair. I received the wheelchair on 22nd September 2015, and little did I know how much my life was going to change.
My Permobil F5 Corpus has electric recline, tilt, leg elevation and seat riser; hooks for my TPN (intravenous feed) rucksack and Urostomy drainage bag; a built-in extendable drip stand for giving additional IV infusions and medications “on the go”; it has lateral and thigh supports; it has a specialist roho cushion which has foam behind my knees but under my bottom, seat bones and coccyx is an air chamber which we pump up to the right firmness for me; they customised the internal chair programme to remove the speed lock on the leg elevation, as my legs are elevated 24/7 and I could only go at a snails pace due to the speed lock – they’d not done this before but they’ve copied my chair programme into numerous chairs since; it has lead hooks screwed into each arm rest to attach Molly’s lead to (she is my Assistance Dog); it has altered degree of the footplate; and a custom headrest which can be angled and adjusted to hold my head in place; and more. The chair has changed my life. Compared to years of struggling to sit up for a few hours a few times per week, I could now sit up for hours on end, not far off all day, albeit not every day. My voluntary, advocacy, campaign, speaking, committee and other work took off, and I was able to keep up because of my new wheelchair. I could go up to Parliament, or NHS England, or conferences, or meetings, or media opportunities, and I could get there, stay there and make a contribution. I was able to live my life. And live it to its fullest. And now, I’m able to work, I’m off benefits, into self employment, earning more than I’d get on benefits, loving my work and I have an amazing life, and largely it’s because I have a wheelchair that is custom built for me that enables me to do all the things I’m doing and live my life as I want to.
In the years since I got my Permobil chair, I’ve built a career for myself, received an MBE, Honorary Masters Degree, a fellowship of the Royal Society of Arts, Manufacture and Commerce, and was named 9th most influential disabled person in Britain in the 2019 Disability Power 100 List. I have a life I love and am proud of, and I’m achieving great things. I’m into paid employment and earning my own living. I’m living a life I love, and living to its fullest. I’ve been to two festivals (WOMAD in both 2018 and 2019) and was able to be just a young adult for once. We’ve been on our first holiday in 12 years to an adapted properly in Norfolk, enjoyed a trip to Wales to see family and friends, and a trip to Brighton to stay near friends. We’ve been to national events and conferences all over the UK, staying in hotels. We’ve done so many things all because I have a wheelchair that meets my needs. The right wheelchair is life-changing and life-enhancing, but in my case I believe it’s had a part in saving my life and keeping me going, almost a decade beyond my original prognosis.
I also fundraised for a 4×4 wheelchair, the Mybility Four X DL, to enable me to enjoy off-road walks, mud, beaches, snow and so on when out and about with Molly. I’ve not been able to make use of this chair as much as I’d like to and I’m saving up for some adaptations to the chair to make the seating more comfortable, so that I can make full use of the chair and enjoy it to its fullest capacity.
It just goes to show how important the right wheelchair is, and how the right wheelchair can completely transform a life for the better. Wheelchairs are not devices of restriction, and we as a community loathe to be referred to as “wheelchair bound” as we are not bound to our chairs and they are not a negative and restrictive item; wheelchairs are our freedom, our mobility, our tools of independence and control, our devices that facilitate quality of life and enable social, educational, employment, relational, personal, spiritual and practicals opportunities; they are providers of liberation. Wheelchairs provide a function that our bodies, due to impairments, are not able to provide. The only limitation that arises from being a wheelchair user, is society’s refusal to be truly accessible, equal and equitable so that a wheelchair is not at a disadvantage. The wheelchair is not the issue, it is our patriarchal, discriminatory (whether intentional or not) attitude towards equality and accessibility and our refusal to remove the barriers that prevent full inclusion and equality for all individuals, regardless of having an impairment or none. I implore everyone to please read up on the social model of disability. We have been sold the lie that disability is a bad thing (Stella Young, spoken in her TED talk, 2014) and the medical model that our impairment is the issue in need of fixing has dominated our thinking, our attitudes and our behaviours for most (if not all) of our human existence. If society were truly accessible, there would be no disability; only bodily diversity that means every individual has different needs and tools to use their body to its fullest capacity and capability. We would not be disabled; we would just have bodily diversity that creates the need for a different way of thinking about and going about doing things.
Wheelchair = freedom, not restriction!