What if we viewed lived experience as an asset? As an asset of professional, economic,…
I remember the day I first used a wheelchair. It was February 2008, and I hated it. I mean I really hated it. I didn’t want anyone to see me, so much so I refused to go out in case I saw someone I knew. I felt so self conscious. It was a long time before I felt happy going out in my wheelchair, probably not until 2011 when I got my electric wheelchair. That’s the first time I recall being totally comfortable in one.
When I became ill in January 2008, after a few years of deterioration, struggling, and fighting, physiotherapy to try and strengthen up my muscles in addition to strapping up my joints, I was forced to admit not only to myself, but to my family, that I couldn’t do it anymore. I stopped riding – which I lived for – and wasn’t able to walk the dogs, and not long after, school became an impossibility. I felt so low. Chronic pain had set in and I had this awful skin hypersensitivity, where even my clothes and vibrations of people walking past me were painful. It took a good year to desensitise my nerves. In September 2008 I started going to school for 2 hours per week. Unfortunately, by August 2009 I was bed bound and school was no longer possible once again. I fought to continue my education despite discouragement by my health professionals with excellent support from the Children’s Support Services. I did my GCSEs, from my bed, at the same time as my peers in 2010. I achieved an A* in Sociology, A’s in English, Biology and Physics, B’s in Maths and Chemistry, a C in French and 2 distinctions in IT, 9 GCSEs in total. It was a huge achievement given that I only had 6 hours of tuition a week. Yet again, I pushed myself and managed to go to college to study the sciences. However, my health deteriorated dramatically and I was forced to leave college.
|Receiving my Diana Award with my CSS tutors Michelle, Liz, Mary and Jenny
However, even in school and college in my wheelchair I hated it and felt like people were staring all the time. I couldn’t do things that others could; I needed help in experiments as I couldn’t reach things or hold anything of any weight without dislocating something or having to put it straight back down because my grip is too weak. I felt that I stuck out like a sore thumb, and felt like an inconvenience. People didn’t know how to handle me being in a wheelchair, they felt put off by it and the fact that I had a carer and/or a scribe with me, and didn’t know how to talk to me. I broke the ice with a few people at college, but no lasting friendships. The tutors where great however. My time at college, though short, was enjoyable. It was just the wheelchair yet again that I felt was ruining things, as was the fact that I could only sit up for long enough to get to college, do an hour’s lesson, then come straight home and lay down again. Moving around the college in between lessons was hard. So many near misses when people pushed past me and I nearly ended up with them on my lap! Frequently people let the door shut behind them so my carer and I fought between us to try and open the doors.
Another problem faced by people in wheelchairs is that so often people think you’re not capable of communicating. They either talk over me to my carer or bend down and shout in my face. Once a nurse treated me like I was thick and deaf and bent down and shouted at me despite mum and the other nurse talking to me normally. I’d get a lot of “how is she?” and “does she need anything?” like I can’t speak for myself. I’d often answer them myself, which usually made them feel a bit stupid. I understand people are scared of saying or doing the wrong thing, but even if they have got special needs, include them in the conversation. You can quickly gage their ability by a simple “hello” or “how are you?” – if they can’t speak for themselves, their carer will, but if they can speak, they will answer. I still get it occasionally now, but as I can drive my own wheelchair people can see I am mentally capable and can have a conversation.
Yet another big issue for me about being in a wheelchair is the lack of disabled access. I get so frustrated: stairs with no ramp, unsuitable ramps, not enough turning room, not enough dropped kerbs or dropped kerbs that are not flat with the road, no dropped kerbs by disabled bays, not enough disabled bays or poorly positioned disabled bays which make it dangerous for wheelchair accessible vehicles, cars parked on the pavement blocking the path for wheelchairs, displays too close together or poorly positioned in shops so I can’t look at things (mum has had to move displays around just so I could have a look at some clothes) and so much more. It’s not easy being in a wheelchair. Discrimination is still happening; it’s everywhere. I get frustrated by people pushing past, walking in front of me and then tutting at me because I’m in their way, hitting me with bags, treating me oddly and pushing in front of me when I’m trying to get into lifts etc.
Even my local shops are inaccessible for me because there’s no dropped kerbs. Local shop owners have put in ramps but unfortunately the council refuse to put in a dropped kerb despite campaigning by myself and local shop owners. This also applies to the park and local nature spots, which I can’t access to walk my dog Molly. They have barriers which prevent bikes getting through or they have the equestrian barriers, stiles or kissing gates all of which also prevent wheelchairs getting through. It’s hard work enough being in a wheelchair without all of this discrimination, let alone with all the inconvenience caused by poor access and the battles to get this rectified by the council – yes I have written to them, five times, to no avail. I will take up the issue with public transport and wheelchair users at another time.
All of this does not help how wheelchair users feel as we feel like we’re not wanted. We feel that we’re not worthy of the same rights, access to places and enjoyment as able bodied people. We feel like we don’t matter. You never really know the extent of the problems unless you become a wheelchair user or you have a family member or client in a wheelchair. It doesn’t help when we fight so many battles when you can’t just go out to the local shop, to walk your dog or to go shopping – a right everyone supposedly has in this country. Do they forget about us? Or are we just an inconvenience?
Despite everything and all the trouble I’ve had, I am comfortable with myself in a wheelchair now. I have accepted it. I get frustrated by the access problems and the barriers to me living a somewhat normal life, but my image of myself as a wheelchair user I am happy and confident with. I view my wheelchair as a tool; as one would use a pencil to draw or a brush to paint, my wheelchair is simply a tool. I describe myself as disabled, but I don’t consider it a part of my identity. It was at one point, but I’ve learnt to have a life and have things I like and can do which are my identity, not my wheelchair. Did you know that I rarely dream I’m in a wheelchair? I usually dream I’m I have Ehlers-Danlos and all the complications that come with it (bags, tubes, TPN etc.) but I’ve never dreamt I’m in a wheelchair.
However, it wasn’t plain sailing to get to this point. I’ve been on a huge journey over this almost 7 years of illness and adversity. It’s been horrific at times, and it’s an achievement to have made it this far. Along this journey I’ve learnt to grieve, coming to terms with each new symptom, each loss of some ability, each progressive day that limits my life further and further. I’ve had to grieve over and over; each new problem, each new loss, grieving over the life I lost and grieving for what might have been. The grieving process: Denial, Anger, Bargaining, Depression then Acceptance. You might get stuck in one phase of the process; we all have a different path, a different journey through life and through adversity. You have to learn to accept it; acceptance doesn’t just come instantly. Just don’t beat yourself up, you will get there. I’ve managed to have a life outside of my illness for the first time since getting ill writing and speaking, and I no longer consider my illness or disability a part of my identity. I feel comfortable in my own skin. I’ve found myself again. I’m Lucy, who loves butterflies, horses, dogs and zebras, whose favourite colours are blue and purple, who enjoys writing and speaking, who enjoys photography and being out in nature, and is doing lots of work for charity. That’s who I am, not EDS or disabled. I can accept that my wheelchair is a tool I use to have some quality and enjoyment. I no longer fear what people think of me when they look, I smile at them if they stare and don’t think twice about it. I know I am loved by my family and friends because I am me. To them, my illness and disability are irrelevant. I am more than just a girl in a wheelchair; I’m Lucy Watts.