On being disabled

Last weekend I went to Wilderness festival. Camping, outdoor living, the damp, late nights and poor quality sleep is usually a recipe for an arthritis attack. Two years ago I had one of the worst attacks I’d ever had at a festival. The pain hit me in almost every single joint and I was unable to walk, stand or even sit comfortably. On the Saturday night, while everyone else was dressed in fancy dress costumes, dancing and having fun, I was lying in my tent in agony crying my eyes out.

I haven’t always had arthritis (or to be more accurate, Palindromic Rheumatism – PR for short). I developed it seven years ago after a big life change – which is apparently not uncommon for auto-immune disorders. It was a confusing and difficult time. I was dealing with the break-up of a long-term relationship while getting my head round these weird attacks. Sometimes it would be mild, but hang around for days or weeks in one or more joints. Sometimes it would be extremely acute – usually in the larger joints – and leave me worried that somehow I had dislocated or broken something. Painkillers didn’t touch the pain. One day it would hit one joint, the next day the pain could be somewhere else or even gone entirely. It was all very weird.

I was eventually diagnosed and had to learn to adjust to living with a long-term condition. Applying for jobs three years ago, I found myself on the phone to Arthritis UK to try and find out whether or not I should be ticking the ‘disabled’ box on the forms. I was told to consider myself at my worst and if that was ‘disabled’ then I was.

I was flummoxed. Disabled? Me? I’d got used to living with PR but until that point hadn’t ever thought of myself as a disabled person. I still cycled everywhere when I was able, still had an active life, still went diving on holiday. How could I do all those things and be disabled? Yes, sometimes I couldn’t walk properly or was overcome with fatigue, but then I compared myself with people who had more severe PR or rheumatoid arthritis and wondered how I could be considered to be disabled when I wasn’t as badly affected as they were. Like many people, my definitions of what a disability was were pretty narrow. It certainly didn’t include someone like me.

Over the past year, I’ve started to think much more about what it means to be a disabled person. I’ve begun to feel more comfortable with explaining that, because I have a disability, being self-employed is my preferred way of working; I can manage my own time, don’t have to get up too early, and if I need to work from home I do. Yet I still find it tricky and it never flows easily. Other people’s reactions don’t help. “You don’t look disabled” they sometimes say. It’s true that my pain is not visible to others. I look more or less exactly the same when I’m having an attack or overcome with fatigue as when I’m completely pain-free and full of energy. And so I worry about people’s pre-conceptions, and whether I am really disabled ‘enough’ to call myself disabled.

Earlier this year, I started to plan this summer’s festivals. My experience at Shambala and a bad attack at WOMAD last year, meant that I needed to have a rethink. I don’t want to give up going to festivals. I’ve been festivalling since I was 17 and I’m not ready to stop yet. And while an arthritis attack is likely, it is not guaranteed. So, what would make attending a festival easier? Having disabled access seemed to be the answer. The trouble is that there doesn’t seem to be anything (correct me if I’m wrong) that proves that I’m disabled unless I claim benefits. But I don’t feel that I need to claim benefits. The process is daunting and as the paperwork seems unable to cope with variable conditions, I think that I would not be considered disabled enough. Happily, the organisers for Wilderness festival were flexible and so we rocked up on Friday, and drove straight into accessible camping.

I still had a few internal struggles. Was I asking for special treatment by asking for disabled access or was it just allowing me to be at the same starting point as everyone else? I worried that people might be judging me, thinking that if festivals might trigger an attack, surely I should stop going to them altogether? It didn’t help that Wilderness had run out of disabled wrist-bands so that every time I tried to get access to a viewing platform, I had to explain myself; not particularly empowering.

I also kept returning to the idea of what we think of as disabled, which so often seems to be about visible conditions – wheelchair users, those who are sight or hearing impaired. But looking around the accessible camping field was a perfect illustration of how disabilities are much broader than that. Except for the two women in wheelchairs, it was impossible to tell who, among the forty or so people camping, were the disabled ones; mine is not the only condition that is invisible to others.

The difference that having disabled access made to the quality of my weekend was enormous. Having the car next to the tent, so that I didn’t have to carry everything for miles, leaving me exhausted before the festival’s even begun, was fantastic. Viewing platform access was also great – meaning that I could sit down and still see. It would have been better if Wilderness had provided the chairs (is it possible that the organisers thought that only wheelchair users would need the platforms?), but I had my own, so that I could sit and rest whenever I needed to.

As it turned out, the expected arthritis attack never arrived. It could have been pure chance or it could have been that minimising the stress on my body was the reason. Whatever it was, this weekend’s experience has been positive. It has highlighted the importance of feeling confident enough to demand disabled access, what difference it can make and allowed me to know that I can still go to festivals and enjoy them.

I’ve also finally realised that it’s only by embracing a broader definition of disability, that I am much more comfortable with that identity. If it’s taken me that long to do it, it makes me wonder how long it will take for the rest of society to do the same.

Links

• Information about Palindromic Rheumatism

• My blog on living with Palindromic Rheumatism

How I Became Disabled: great blog which inspired me to think more about my own condition and issues around accessibility

•  Guardian article on employment and disability (featuring me!)

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About Ruth Rosselson

I am a writer, researcher and consultant with over 14 years experience of writing about ethical and environmental issues. I specialise in writing copy for NGOs, charities, social enterprises and the co-operative movement.
This entry was posted in Accessibility, Arthritis, disability, Equality and tagged , , , , , , . Bookmark the permalink.

3 Responses to On being disabled

  1. Max Wurr says:

    Very well put, and to answer your specific question about ‘proving’ you are disabled, the Equality Act 2010 defines a disabled person as someone who has a physical or mental impairment which has a substantial (i.e. more than minor or trivial) and long-term (i.e. lasting more than a year or frequently recurring) adverse effect on their ability to perform normal day-to-day activities. There is no requirement to be claiming benefits or to register as disabled or anything else.

    In keeping with that, the law does not require that you prove to service providers (which would include festival organisers) that you meet this requirement; it simply requires them to make the necessary reasonable adjustments to ensure that you can use their service.

    The bottom line is, if you feel excluded because of your disability, ask the service provider in question what arrangements they have to accommodate you. If they have no arrangements or show no willingness to make such arrangements (as long as these are reasonably practicable), they will be in breach of the Act and you can legitimately take action against them. And frankly, you bloody well should.

  2. Anne Miller says:

    Great article

    I recently and quite suddenly found myself crippled by arthritis in my foot. Like Ruth, I absolutely didn’t think of myself as disabled: I was a walker, climber, kayaker and mountain biker …. but I could only walk about 100m. Medical advice was that this was either probably permanent (the surgeon) or that might improve a bit if I was careful and worked hard (the physiotherapist)

    I’ve been trying the physio route and when its been painful I’ve been very careful about not agravating it. Often this has meant using my bike when normally I’d have walked somewhere. When visiting historic sites over the summer, we found some sites were much more helpful and supportive about this than others. Historic Scotland were fantastic:They immedately trusted me not to do wheelies amongst their ancient stones and welcomed me + bike amongst their ruins. One neolithic site in Orkney even took their gate off its hinges to make it easier for me to bring the bike in! On the other hand, The National Trust were unbelievable nitpicking and bureaucratic. No way could I use my bike to accompany my friends round the gardens at Anglesey Abbey in Cambridgeshire.. even tho there was no way this could be damaging. They offered me an electric buggy, which no doubt would have been good for some of their elderly visitors, but as a fit mid50s I would have been mortified to have used one.. Finally with lots of huffing and puffing, they allowed me to be let in (on foot) at a gate at the far side of the gardens, so I could at least join my friends for a picnic, even if the rest of the gardens were out of my range.

    Currently I’m making quite good progress with the physio and my range is increasing so it is limiting my activities less than it did, but the experience has been eye opening about the subtleties of disabilty and the need for flexibility in accommodating people’s needs.

    Anne

  3. A very interesting article.

    Never really thought about it before, but having read this I agree that disabilities are no less valid simply because they don’t confine you to a wheelchair. My concern is that the current drive to force people off incapacity benefits and back into work misses all this subtlety.

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