Disability pride

July 2020 is the first ever Disability Pride Month – timed to coincide with the 30th anniversary of the landmark Americans with Disabilities Act.

When I saw the first few Disability Pride tweets pop up I was surprised – we very rarely get this kind of acknowledgement of the disability movement – and a little uncomfortable: I wasn’t sure we should be co-opting the language of our LGBTQ counterparts.

I still haven’t squared that circle, and I’m not sure whether another word could be used, but as I have thought about it over the last 28 days I have come round to the idea that we should have some form of ‘pride’ for disability: a recognisable and empowering symbol through which to raise our voices.

I came to this conclusion by realising that I am indeed proud – in the traditional sense of the word – of disability. I am proud of my own success in overcoming the many, many barriers ableism has built in my way, but more importantly I am proud of the movement, what it represents and what it has achieved.

The disability community is my community.

It is where I am safe. It is where people do not require a ten minute explanation. It is where people understand the exhaustion you sometimes feel with ableism and care issues, inaccessibility and pain – but where precisely no one feels sorry for you.

It is where I really, really laugh.

If you had told me this when I first started this blog 10 (10!) years ago, I wouldn’t have disagreed with you, I just wouldn’t have known what you meant. I had never had a disabled friend, had almost never seen someone like me in the media, had no real role models to look up to. The concept of having pride in a body I saw as faulty and marking me out as ‘different’ simply would not have made sense.

As luck would have it, all that would soon change. I would discover Twitter and its activists; disabled writers and journalists would start to become a little more visible. Many of the latter are now, incredibly, my colleagues, and slowly we are starting to change the conversation.

And, most importantly, I would make disabled friends. They are, let’s be honest, among some of my favourite people in the world, and I’m pretty sure they know who they are.

I found my place.

I often wonder whether I would have the same mental health issues now if I had found it sooner.

When I hated my body, these were the people who showed me the problem was not mine but society’s. When I dreaded independence from my parents – or feared it wasn’t possible – they were the ones who showed me the way. When I feared not being able to do all the things I wanted to do, they were the ones who said, convincingly: of course you can.

Along the way they have raised my voice, supported me at work, and helped me find an identity.

The disabled community is such a thing to be proud of. These are people who challenge injustice, offer friendship, create solidarity – and tell the best, most outrageous jokes.

Disability pride? Count me in.

An honest reckoning with a hard month

Yesterday was World Mental Health Day. I wanted to write something about love and overcoming hard times, about ending the stigma and accepting differences. But I couldn’t. The past few days have been a period of recovery from what have been a very tough few weeks, and while I feel better now with each day, I am still physically and mentally drained. Yet I know that blogging has been my solace in much darker times than these and so I come back with hope of solace once more.

Just over three weeks ago, I started at the LSE. On Thursday, I left. I did something I have never done before: I gave up. I admitted defeat. Not because it was too hard, but simply because I was too miserable and life is too short for that. It is not worth going into details here about what happened. What is worth considering is what I learnt.

Most of all I learnt that the three-month break from academia I had over the summer needed to last somewhat longer. I am officially burnt out when it comes to essays and required reading. Right now, I’d be happy never to see either ever again, yet I also still love education and I sincerely hope that the allure comes back in time. I would quite like a Masters to my name, eventually. Unusually for me, I just couldn’t muster any enthusiasm for my studies, and I knew I’d never survive the rigours of the LSE without it. This just was not the right time.

Drive is important outside education too. Those of you who know me best know that life is not always easy, and yet I almost always cope. That’s because, fundamentally, I really wanted the things I was aiming for: getting into university, getting a good degree, interning. Without that longed-for goal I felt – to use the cliché – cast adrift, and most terrifyingly I could feel my confidence slipping away. I did not go anywhere alone the whole time I was at the LSE. I felt gut-wrenchingly sixteen again.

I never want to feel like that again and, thankfully, I am quickly returning to the self I found at Warwick. Nor do I ever want to feel, as I did at the LSE, like the girl in the wheelchair. It is so isolating, so scary and so hurtful to feel so different, to feel that you do not belong because of something you cannot change. Yet the experience made me thankful all over again for the people who alleviate that feeling and who, through their love and friendship, make me feel simply like Lucy.

To all of you who supported me this past month, I am so full of gratitude. Being wrenched from my normal support network made the whole thing so much harder, yet I was buoyed by how easily it translated across the miles between us and by how much understanding and kindness came my way. I may have been lonely but, thanks to you, I was never alone.

So I guess what I am trying to say is that there is almost always light in the darkness. Life is hard but you can choose to make it better, even if that choice is scary. I am somewhere I never wanted to be: back home and looking for work. And yet I am happy and I am surrounded by friends. I am myself again. The main lesson here then is that sometimes, the unexpected path is the best one to take. Who knew?

A late night post

It’s late at night and I’m in a pensive mood, so of course I’ve ended up here after a long time away. And as it’s Easter Sunday, I don’t have to feel any should-be-working guilt. In fact, I don’t have anything in particular to say. Perhaps that’s a dangerous way to start a blog post, we’ll see.

So many deeply sad things have happened around the world since I last wrote here and no political debates or rousing sentiments, no matter their real importance, can heal the wounds. They will and must sting forever. And while I am so lucky and personally happy, surrounded as I am with love and laughter and opportunities at every turn, I have lost my once-cherished belief in the inexorable march of progress. While I still remain hopeful of better times, I see that one step forward will inevitably be matched by several backwards, and that there are no simple solutions (writing a dissertation on the failures in Iraq and Afghanistan has definitely seen to that). In fact, I sometimes wonder if there are any solutions at all. But I haven’t stopped trying to find them, if only as an intellectual challenge. And really, I don’t think the world has stopped trying either. Maybe hope and despair are just two sides of the same coin.

On a more personal note. As I reach the end of my undergraduate studies at my beloved Warwick (yelp!), I have been thinking a lot about who I am and that’s always tied up with the questions I have about disability: how does it affect who I am? How will it influence my life from here on in? What needs to be done to make disabled people’s lives better and how do we do it? Is it my responsibility to do something or should I just live life as if it didn’t matter to me? I still don’t have the answers.

Studying politics has taught me one thing above all else: everything is socially constructed. And so I am forced to ask new questions. What does it mean to be disabled? How can I be proud of my social identity while still challenging it? How do we break down barriers of difference and fear? How, how, how. And university has taught me that nothing operates in a vacuum, so we need to look at disability and everything it intersects with: race, class, and most importantly for me, sexuality and gender. I’ve had an article on the latter bubbling around in my head for months now, but I can’t quite tease it out and haven’t had much luck pitching it either. I am determined to get it done somehow though and it is on my post-exam to do list. Once in a while something comes along which feels necessary, as if it has to – is demanding – to be written, and as a writer I think I’d be pretty stupid to let it pass. And this, my god, needs to be said.

I definitely don’t have the answers to this bigger questions. But I have come to one conclusion: talking about these things is doing something about them. Speaking about disability in seminars this term has been so incredibly rewarding, as I have been greeted with support, understanding and, most importantly, an eagerness to understand and know more, even from academics. Recounting these conversations to my mum, she labelled me a ‘one woman campaigner’. But I’m not really, nor will I ever be. Instead, I will keep doing what I’m doing and see if I ever find some answers. And in the meantime, I will keep being honest about what it means to be me. In the end, that’s as much as any of us can or have to do. Look, there’s that quiet hope again.

I will not be afraid

It’s midnight. Just by the time of publication on this post you should expect some introspection, and that’s what you’re going to get. Because today, I’ve been thinking about fear, and how it and its absence have shaped my life.

This afternoon, on the recommendation of one of my best friend’s dad, I met the MD of an investment firm in the City to talk to him about my experiences at work. I know that sounds a bit, well, random, but he wanted to have an insight into the challenges faced by disabled workers in the hope of diversifying his work force – a laudable aim in a sector famed for being dominated by white men. The conversation was wide-ranging, but it centred on two main themes: why there are a lack of disabled applicants, and what I believed disabled people could bring to a company, financial or otherwise (I gave it the hard sell). And these two themes both yielded to discussions about fear; firstly, how a fear of access problems or perception issues or simple outright rejection may put disabled people off applying for high-flying jobs.

But secondly, how the necessary resilience needed for a disabled person to have got to a position where they can apply for jobs makes them pretty damn good candidates. If someone with a disability has graduated, left home, or engaged with society in any variety of ways, they have stared down the barrel of the gun of fear and, if not smiled, certainly haven’t blinked. If they’ve had careers, I’d like to bet they have more practical business skills, and people skills to boot, than any MBA grad who’s never faced adversity. Yes, we have our weak moments (I certainly do), but when necessary we are tough as nails. And our determination to overcome some pretty harsh odds make us hard-working and ready to seize any opportunity. Really, we should be getting all the jobs.

As I talked of fear, I realised that I don’t have anywhere near as much of it as I used to. Here I was talking to someone I didn’t know, just as I spoke in several meetings during my time at the Guardian, and I wasn’t scared, when talking to strangers or groups used to be my worst nightmare (for this I must thank the lovely folk of Warwick, particularly Fran, Fran and Hayley). Even more dramatically, whilst discussing the disability employment gap, I realised that I no longer believe, as I once truly did, that I am going to be permanently unemployed. I’m going to get a job. Of course, I am going to get a job. Not because or despite of my disability, but because I am capable, determined and hard-working (although sadly not the literary genius I wish I was).

How I wish I could get that message back to my teenage self. I wonder how many sleepless nights I could have been saved had I not worried about this so much, and how much happier I could have been. I think I would have taken a few more opportunities, and I kick myself now for letting them pass by. But no matter, I believe that confidence is much sweeter when you had to build it. It is my badge of honour for coming further than I ever thought I would and I wear it with pride. The natural worrier that I am has found new things to fret over (no prizes to those who know me well for guessing what they are). That’s just life. But today, I looked in the mirror and thought to myself ‘I am not scared’. And that’s something; long may it continue.

20 lengths of backstroke and a little frustration

Along with my writing challenge, I have also set myself the task of going swimming a couple of times a week. There seems little way to bring writing into swimming, so here I attempt to bring swimming into writing.

Swimming to me is a contradiction. In one sense, it is freeing; being able to use my body semi-properly is good and rewarding. Progress can be remarkable, and I am proud that I can swim despite a disability that could suggest otherwise. Recently I have been doing about 20 lengths of backstroke in an hour; not much for some but a pretty decent achievement for me. It is also the only form of exercise I can access easily (I don’t count physio!) and it is unbelievably good for me: stretching out my twisted and often sore back and making my muscles work. When I swim, using my body for other things becomes easier – even things as simple to most people as standing up. Swimming works such wonders that I should do it all day every day. But I don’t.

Part of this is a stubborn aversion to anything I am told to do for the sake of my body, which I tend to regard as a lost cause (not in a depressing sense but in a past-the-point-of-caring one). There’s also the practical reason of having other things, like work or have fun, to do – swimming generally takes it out of me for the whole day, meaning I waste many hours for one hour of exercise. In term time, it very seldom seems a good use of my time and so sometimes I don’t go for months at a time.

This contributes to the other reason for my avoidance of the pool: frustration. It may be a nice feeling to use my body sometimes, but only if it decides to play ball, for which there is no guarantee. Cerebral palsy is strange because it affects you differently every day, so something which seems easy one day, like controlled breathing, is almost impossible the next (cue major spluttering and inward dark muttering). This is entirely demotivating and can, on tougher days, remind me of the dislike I have often felt for my body. Cerebral palsy also means that without practice you lose the ability to do things really quickly and quiet dramatically. This doesn’t just mean I get a little slower or lose a bit of form. It means that while I used to be able to do a whole length of breaststroke, I can now hardly do it at all. So once I haven’t been swimming for a while, I lose the enthusiasm to go – I know that I will struggle and become frustrated. You can see how this easily becomes a self-perpetuating problem.

I was once told that if I did enough training I could have been a Paralympian, Given my hostility to the idea of exercise, this was and is somewhat laughable, but I do wonder if constant training would have allowed me to overcome the frustration I often feel in the water. But I chose my academic and writing career instead and am immeasurably glad that I did. Still, it wouldn’t kill me, or lead me to fail my degree, if I went swimming just a little more often.