A collaboration between Diary of a Disabled Person and Seeing ME in Reality.
It surprises many people that self-propelling a wheelchair takes a lot of effort and energy; after all, you are pushing the weight of both yourself and the wheelchair with smaller muscles in your arms. While this is often suitable for those who still have some upper body strength and motor control, it is not a viable option for those without such strength. This group includes M.E/CFS sufferers, a condition which affects both of us. We are left with two options; a powered wheelchair or a manual wheelchair pushed by another person, and the experiences of those using these wheelchairs are more different than you would imagine.
Using a Manual Wheelchair: (Seeing Me In Reality).
Wheelchairs are an emotive subject for those who use them and those who don’t. I haven’t spoken much about my wheelchair story if you want to call it that. After a significant relapse of my M.E/CFS, which left me unable to leave the house for three months my options were limited. I couldn’t go out with my family and at the time, we didn’t know how long this new reality would be for.
I fought against my Mum’s outlook that I needed a wheelchair because I didn’t want to get stuck. I was petrified of how people would react to me, but above all else, I didn’t want to face up to how much I had deteriorated. I was fifteen and my world had irrevocably changed.
Eventually, without my knowledge, my Mum borrowed a wheelchair from our doctor’s surgery. I had no idea how to react, I was devastated but came to terms with it slowly. Henry as I called the wheelchair got me out of the house again.
I learnt quickly that wheelchair users need thick skins and that for as bulky as the metal we sit in, being invisible is a usual occurrence. I think that phenomenon is universal regardless of whether like me you use a manual wheelchair or electric.
I have been lucky that several times I have been offered an electric wheelchair, which is a great opportunity that I am thankful for, but at the same time, I know I would be an energy-depleted mess halfway up a tree. I need to conserve energy, which is why I have someone push me as it takes a lot of the hassle of navigating away. I also live in rural area, so transporting an electric wheelchair would be complex and add more effort to each outing. So whilst sometimes I do want to be independent and go exactly what I want, due to my health and where I live it isn’t very easy. If I were to live city central like Em, then it might be worth the investment and change.
Over the years I’ve gotten used to taking displays with me in shops or nudging people due to bad driving (not mine), you have to see the funny side of temporarily wrecking shops and apologising profusely to people who got touched by the metal I sit in. To me it’s amazing the lack of personal space and reaching over people will do to an individual in a wheelchair, but as soon as you enter their personal space they get touchy. Conversely, I was surprised at how vulnerable I felt, I relied on the person pushing me to get me around safely. If I were left momentarily, people being truly invasive would swarm me.
I have to say I do feel invisible often from my wheelchair. It is a strange feeling when you are ordering something in a café and the barista talks to the person behind you, rather than you. I learnt to just keep talking and to let any off colour comments go over my head. I would say regardless of the type of wheelchair you would face some of the same invisible or negative experiences. It is amazing how invisible you can feel when out and the flipside being how much staring many people do. I always smile at people when I catch their eye, as I believe it humanizes the person in the wheelchair. Most of the time its curiosity that makes people stare.
Wheelchairs and any other aids rarely cater for all sorts of heights and needs. I am pretty tall (5 11″) and wheelchairs are too short for me. Luckily I had my latest wheelchair adapted to suit my height better but that again was really complicated. It’s not exactly right either but it’s better than it was. Wheelchairs are expensive and not great for catering to different heights and different needs. I am waiting for them to put integrated cup holders into one of the arms but that might take a few years to come through. Wouldn’t that be great?
Sometimes I would love the independence to go out and about and not have to rely on someone else. It isn’t that often I feel like that which means to me I’m too ill for this to change right now. I would need to be able to drive myself around realistically to make a change in wheelchairs necessary.
I think most people who need a wheelchair at some point or another end up with an attendant wheelchair, which is the stepping-stone for them finding a good fit for them. It’s a personal choice depending on people’s unique circumstances. Maybe in my future, I might change over to an electric wheelchair but for my life now a manual fits my life.
Using a Powered Wheelchair: (Diary of a Disabled Person).
Powered wheelchairs are phenomenally expensive, as I found out when I bought a second-hand one for over £1,000, and are also heavy and virtually impossible to fold up when not in use, which made transporting it extremely difficult. Despite these disincentives, the powered wheelchair gave me a freedom and an independence that I had not had since first falling ill a few years before. It had been years since I had been able to leave the house on my own, as up until then I had been reliant on having someone with me to push the wheelchair. All of a sudden, I could go out when I wanted, to where I wanted. I could go to the doctors on my own, I could go and look at the items that specifically interested me in shops and ignore the rest, and I could go to school under my own steam. I finally had the independence of a normal teenager, and it both thrilled and scared me a little.
Soon enough it was time to fly the nest and go to university, something which would have been impossible without the ability to go out on my own. I couldn’t afford carers, and the assistants provided by the university were not permitted to leave campus and go to students’ homes. Even when an assistant didn’t turn up, which occurred more frequently than I would have liked, I could still get to lectures on time, albeit with a small struggle.
Now I live in a city centre apartment, surrounded by shops, cinemas, museums, galleries, pubs, cafes, restaurants, and public events. I can go out at any time without relying on my long-suffering fiancé to get me there, who has his own stuff to do anyway.
There was one other significant benefit to using a powered wheelchair that I had not anticipated. When I was being pushed by someone it was rare that people spoke to me. They would always speak to whoever was pushing the wheelchair under the assumption that I couldn’t communicate, often asking questions using “she” rather than “you”. While in the powered wheelchair, although some people still continue to ask questions about me to whoever happens to be with me, or just ignore me if I’m alone, this sort of treatment is a lot rarer. This does have the minor inconvenience that charity representatives will now stop me in the street to ask for donations, but aside from this, it’s nice to be treated as a person again, even if I am a motorised one…