Regular readers of this blog will know I need no excuse to write about wheelchairs. When it comes to wheelchairs I’m a woman obsessed, but it’s an obsession with a very valid origin. The right wheelchair gives me autonomy and confidence, but the wrong one depresses me and limits my freedom.
A year ago I got the right chair and I notice and appreciate what it gives me every day.
On Saturday I found myself with the holy grail of a free morning, an amazing support worker and a sunny day. After a week under a blank grey sky, London was bathed in sunshine. I needed to meet Leftwing Idiot in the afternoon so we could head to Brighton for the preview of our new show ‘Light of My Life’. But rather than jump on a bus or get a cab to meet him I decided to go in my chair.
The route from Peckham to Stockwell where we were to meet is very familiar. I do it most days of the week in a cab, and having lived in the area for over fifteen years I’ve gone up and down the streets countless times. Until my tics began to affect my mobility five years ago I wouldn’t have thought twice about making this journey on foot.
I used to walk everywhere – my feet were my primary means of transport – and I miss walking a lot. I miss the pace, the rhythm, the opportunity to look around and the space to think.
On Saturday I set out with Lottie at my side. She was pushing her bike which meant I would have to push myself for the whole journey, and I really wasn’t sure if I’d be able to do it. But we took it slowly and I visualised it as three chunks: the castle to Camberwell, Camberwell to Brixton, with a break for lunch, and then Brixton to Stockwell.
I enjoyed every moment – even the parts that felt tough. This was the furthest I’ve pushed myself in my everyday chair, and I felt intensely satisfied when we reached our destination an hour and a half later.
I have two chairs: my all terrain wheelchair which I use at work and for wild off -road adventures, and the chair I got a year ago which I use every day. Before these particular chairs I had an NHS wheelchair which was very heavy and hard to propel by myself.
My experience of NHS wheelchair services was generally very good. The therapist and technician were thorough and thoughtful, but despite their care I felt frustrated by the limitations of the chair. I had to be pushed everywhere, it struggled with the rough ground at work, and it kept breaking. Each time it broke I’d be plunged into gloom as my mobility shrank and my choices reduced.
I have an active lifestyle and high expectations of what I’m able to do, but the NHS didn’t consider me an ‘active user’. Understandably decisions were focused on keeping me as safe as possible. It’s hard to explain to people who aren’t wheelchair users the difference that the right chair makes. It’s not just what I’m able to do that’s changed, but how easily, smoothly or independently I can do it.
For me the right chair’s meant:
I was able to wheel along next to my sister for the first time in years instead of being pushed by her. I can move in and out of the toilet without help whenever I need to. I’ve sat on a stony beach in Skye and climbed a hill in Cumbria. The right chair’s meant I was able to experience a precious moment alone in my city. It’s meant that I can have arguments without feeling powerless, and that I can rush to greet friends. My chair has made me happier, healthier and more hopeful.
Today gold-medal-winning Paralympian Baroness Tanni Grey-Thompson launched a new national charter to improve wheelchair services across the country. The Right Chair, Right Time, Right Now campaign aims to bring about positive and long-lasting change to wheelchair services as well as raising the profile of this chronically underappreciated service.
Although the campaign highlights difficulties with current NHS provision, it’s really encouraging that it’s being funded and supported by NHS England. They seem keen to explore ways to improve wheelchair services and create a system that works better for everyone. The new charter is a great place to start.
For me the right chair was expensive, but before I got it I’d gone through five chairs in just two years, all of which needed almost monthly repair, unlike my current chair which has only needed to be fixed twice. Additionally the improvements to my fitness and physical health are likely to save money further down the line. Getting it right isn’t important just for individuals – it’s likely to be more cost-effective in the long run.
Find out more about the campaign and how you can get involved here.
Though my long trip with Lottie on Saturday gave me blisters on my hands, it’s also put joy in my heart and positive memories in my head. Without the right wheelchair Saturday and every other day would’ve been very different.