Why I Love My Wheelchair as a Young Woman With Cerebral Palsy
We all have things we treasure — our phone, jewelry or a favorite item of clothing. The things we treasure make us feel good or benefit our life. One of mine is my wheelchair. Yes, my wheelchair! I have cerebral palsy and am able to walk short distances, so I’m only in my wheelchair part time. But I am grateful to have the chair when I need it.
At the same time as I was given my first wheelchair I had recently had surgery, so the chair I had expected to use occasionally, I needed to use full time. I remember being pleased as the chair fit me and fit through doorways easily. After having my National Health Service chair a few years, I learned to drive, and realized I could lift my chair in and out of the car. For a while I used canes, crutches and walkers, mainly because I didn’t think I’d be able to be independent in a chair. I saw friends who use chairs and they seemed to be light and easy to get in and out of the car. I decide to explore my options.
I decided to get a new wheelchair assessment. This assessment couldn’t have gone any worse. We arrived and I was told that they had a choice of two wheelchairs. Both were OK, but the crucial thing for me was could I get them in the car? Neither fit in the boot (trunk). “Put the back seats down,” I hear you say. Well that has a number of problems — one I can’t have more then one passenger, and I’d have no room for anything else. The second problem is that I am small and have poor balance, so I couldn’t safely reach the chair. At the end of the appointment there was mention of the wheelchair voucher scheme.
I came home feeling rather disappointed. My hope of being independent seemed further away. But I looked on the internet at lightweight wheelchairs, and spoke to a friend who used a lightweight chair. After looking on the internet and visiting mobility shops, I was more hopeful — but finding the right chair for me still wasn’t going to be easy.
I visited a shop and looked at two wheelchairs; the people who worked in the shop used chairs themselves so really understood the importance of getting the right chair. Both were easier than the ones I’d tried at the assessment, however I still struggled to remove the wheels. But they would fit in the car and were lightweight. A few weeks later I went back and was told that a new chair had just come in. This chair was light, fit in the boot without having the seats down and would provide me with the independence I longed for.
The wheelchair is used as the symbol for disability; the word disabled can mean less abled. This means that a wheelchair can be seen as a negative. Now I’m not saying that being in a wheelchair is not difficult; it can be very challenging. Our environment is not always built for wheeling! But for me, the wheelchair is something that helps me to overcome the effects of my disability.
I’ve had my chair for about two years now. I love my wheelchair for a number of reasons:
It saves my energy: my cerebral palsy means I use up to three times more energy. Using the chair means I can enjoy a full day out or go out after a busy week.
I feel safe: my balance isn’t great. In certain situations using the chair makes me feel much less vulnerable. I don’t have to worry about losing my balance or being trapped in a door — if I do get stuck in a door the chair gets bashed, not me! This also means that I feel more confident going to new places.
Sometimes I’m in pain: my cerebral palsy means I have muscle spasms. These can cause pain, and on bad pain days my wheelchair allows me to continue with daily activities.
It gives me more independence: before I got my wheelchair, I would only do small amounts of shopping at a time, or someone would need to be with me to help me use my NHS chair. The chair I have now is lightweight and means I can go out and about on my own.
One of the best things for me is being able to enjoy shopping for presents for my family, especially my mum. She was the person who would take me shopping; although she never know what I’d bought, she often knew the shop I’d been in, or I’d have to give my brother the money and details of what I wanted and he’d get it. I know neither my mum or my brother ever minded helping, but I always felt stressed or anxious around mum’s birthday as I couldn’t do what most 20-somethings can do. This year my mum had a real surprise and it was a gift I purchased for her all by myself.
Other occasions when the chair makes life easier is social situations, especially when I am going on my own or to a venue I don’t know. Last weekend my dad dropped me off in town and I felt safe, comfortable and confident enough to stay on my own. Having my wheelchair meant I could move around to talk to different people, get my drink from the bar, and join everyone on the dance floor for much longer than I could have otherwise.
I am writing this because as a part-time wheelchair user, I want people to understand the issues I face and challenge the idea that a wheelchair is always a negative. People have often made comments or behaved in a way they think is helpful or encouraging, but actually make me feel hurt, misunderstood and frustrated:
“You don’t need to be in that.” – I feel that people say this to make me feel that I don’t really need the chair. But to me it shows lack of understanding. If I’m in my chair I feel it is the best thing for me at that time.
“Why are you in there?” – My response to this depends on who and how I’m asked. For example, some people I see regularly have never seen me in my wheelchair. If you work with me or meet me at my local pub I will not be using my chair; meet me on a day out or shopping and I’ll be in my chair. In this instance it offers a good opportunity to explain more about my condition, and this is positive. However, some people will say it in a way that implies that they don’t really want to know, they just don’t think I should be in it.
Another problem I face personally as a wheelchair user is linked to my condition. Because cerebral palsy affects my speech, people often think that it must affect my mental function. Some people do have intellectual disabilities as well as cerebral palsy, but I do not. I also, unfortunately or fortunately, don’t look my age. I’m sure I’ll be glad of this one day! But I have been asked various times “Are you lost?” “Where’s your mummy?” People try to push my chair without asking, or even worse continue to attempt to push my chair when I’ve said I’m OK. If the person thinks you need help, it can be very hard to convince them you are OK on your own.
I also find that if I’m out with my mum or a friend, people will talk to them instead of talking to me. If I am out with my mum or a friend it’s because I enjoy spending time with them. Many activities are more fun with someone else, not because I can’t be out on my own.
Despite the challenges I face, I enjoy the freedom and independence my wheelchair gives me and see my wheelchair as a positive. If you are thinking about using a wheelchair or have a child who may benefit from a wheelchair, I would encourage you to see the wheelchair as a positive thing that can improve quality of life for yourself and your family.
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Thinkstock photo by Katarzyna Bialasiewicz.