Saturday, 1 March 2014

International Wheelchair Day 2014: What a Wheelchair Means to Me

Today is International Wheelchair Day. It is a day to celebrate the wonderful invention that is the wheelchair, and the freedom it brings to so many people. It is also a day to think of those whose lives could be enhanced by the provision of a wheelchair, or a better wheelchair, but who, for various reasons, do not currently have access to one.

Various events are going on around the world, so take a look at the website above to see if there is something happening near you.


Early on in my illness, when I could walk further than I can now, I began to think about wheelchairs. Even though I could still walk 100-200m, my restricted range of mobility was beginning to restrict what I could do. I badly wanted to go to Taize and Greenbelt in summer 2011, and I realised that if I had a wheelchair, I could.

I only began to doubt myself when I thought about what other people might think. Would they think I was giving up? Would it make life awkward and difficult? Would strangers think I was faking when I got out and walked completely normally? Would people treat me differently? I'd already heard about 'Does s/he take sugar?' when I was training to be a social worker.

I looked at a lot of wheelchairs online. I began to consider my options for getting one just so I could do my 2 trips away over the summer. It turned out that the easiest and cheapest way would be to borrow one from the Red Cross (you can borrow one for free, but they like a donation).  I really didn’t like the look of the horrible red and grey chairs on their website, but they lent me a metallic purple one with a really comfy backrest. I thought only expensive wheelchairs could look cool. One person even complimented me on the wheelchair during the trip, and was really surprised when I told her it was on loan from the Red Cross.

My husband and I picked up the chair a couple of days before the trip, so when it turned out to be lovely evening, he took me for a walk down the road. It felt better than I had ever imagined. The sensation of being pushed in a wheelchair took some getting used to, but I felt free. Free and happy and so grateful just to be basking in the evening sun.

The wheelchair I borrowed for Greenbelt wasn't as nice, but it still meant I could go and enjoy the festival. A month later, life was getting so awkward without a wheelchair, I started hiring one. Turns out, when you just get by without something, you don't actually know how much you can benefit from it until you actually have it. This has turned out to be true with several other things I now have to help make life easier living with ME. I noticed it with people I worked with too, when I was a social worker.

The only problem with the hire chair was, I hated it. With a passion. It was grey and uncomfortable. I still got so exhausted from sitting in it and I was embarrassed to be seen in it. The worst thing was that the seat sling didn't attach to the backrest so I was left with my bottom peeping out between the two. Not dignified in the slightest. Every time I looked at the chair folded up in the corner at home, it seemed to remind me of everything I couldn't do. On top of that, it was giving my husband backache because the push handles were too low for him.

So, during one of my many trips to my GP at the time, I asked her if she would refer me to wheelchair services, to see if I could get a chair on the NHS. She agreed, but I didn’t meet the criteria. There is a bit of a postcode lottery when it comes to who is eligible for a wheelchair on the NHS, and where I lived at the time, they considered that I wouldn't use a wheelchair often enough for them to provide one. Instead, they provided me with a list of local retailers where I could buy one.

I struggled on with the hire chair whilst unsuccessfully chasing second hand chairs on eBay. Money was tight - back then I thought it pointless to claim DLA as I might get better - and I felt I couldn't justify buying a new chair for the same reason.

Eventually, my husband talked me into buying a new chair from a discount site. Most of the second hand chairs on eBay were actually going for around the same price. As soon as my new wheelchair was delivered, my joy returned. It was blue (my favourite colour), it was comfy, it was dignified. The push handles were a better height for my husband. We went out in the sunshine for a picnic, and people-watched in the park. I sat proudly in my new chair, happy to be out and about enjoying myself.

But it didn't last. As time went on, we realised I was probably going to need a wheelchair for a while, and the new one was wearing out already. All the joints were loose and had to be tightened up all the time. The cushion had lost it's supportiveness. I was becoming unhappy again. I wanted more freedom.

I was beginning to hate being pushed all the time. I couldn't look at the things I wanted to look at in shops. I couldn't control my own speed. I got travel sick when my husband changed direction without warning. People saw me as dependant and wanted to do everything for me. It was difficult for me to change position when stationary.

I began, literally, to dream about pushing myself around. In my dreams it was easy, so easy I was even flying in my wheelchair. I would be effortlessly speeding through my dreams, and then I'd wake up. My husband and I started talking about a long term solution. If I was going to get myself around, I'd need power assistance. I looked at various options, but what I really wanted were e-motion wheels.

I'd seen someone using them at Greenbelt 2011, and promptly Googled them when I got home. They seemed perfect. But they were an expensive dream, especially since to make the most of them, I'd need a new wheelchair too.

But in November 2012, I received a life-changing letter. I was about to inherit enough money to buy the e-motions and a new wheelchair. I could scarcely contain my excitement. Even Christmas paled into insignificance next to my literal dream-come-true. I could barely think of anything else. I printed off the leaflet and showed everyone I knew.

In January 2013, I went to try out the e-motions at an approved mobility shop. They got me to try out lightweight chairs first, to see if that would be enough to enable me to get around on my own. It was better, but not good enough. I tired quickly just pushing round the shop. Then I got into the chair with the e-motions on, and I just didn't stop. I went backwards and forwards for ages, until the guy asked if I'd like to take them outside. Pushing myself along the row of shops, it was the furthest I'd been independently in over a year. I was sold.

Back inside the shop, we discussed wheelchairs for hours, and I chose a chair, associated options and a cushion. I also discovered why my other chair had worn out so quickly. Who knew I was wasn't an 'occasional' wheelchair user? The NHS certainly seemed to think I was!

I've had my current wheelchair for just over a year now, and it has changed my life. I am happy with the way it looks, with the way I look in it, with how it feels and how it fits and supports my body. It minimises my physical fatigue in a way that no other wheelchair I've tried ever did. It has been an enormous boost to my confidence and it has opened up my world. I can do everything I wanted and more. I've never been one for speed, but now I can 'run'. I adored dancing, and thought I never would again (unless I recovered), but guess what? I can.

And that's the thing really. A lot of people think a wheelchair means restriction. I understand why that is. If you put a non-disabled person in a wheelchair, they are more restricted than if they weren't in the chair. To those who can walk as much as they want and wherever they choose, a wheelchair is restricting.

But it isn't to me.  Today, I hope Eileen can hear me say thank you for her generous gift. It isn't just a wheelchair. It is freedom, confidence, dignity, independence and glorious possibility.

 Picture shows me, a white female, sitting in my wheelchair. The wheelchair faces a view out to sea, I am looking over my shoulder towards the camera.

Want to celebrate International Wheelchair Day by making someone's wheelchair dreams come true? You could donate to one of the following charities, or find out if there's one local to you.

You could also sign this petition which calls for better wheelchair provision from the NHS.