A month ago this Wednesday, I was turned down from a dating agency for being too disabled.
I have taken to referring to what followed – a viral Twitter thread, a Radio 4 interview, a discussion on the Last Leg – as A Series of Unexpected Events. I capitalise this phrase in my own mind in an attempt to mark the entire episode as somehow separate to my real, lower-cased existence. Reality resumes. I have carried on. I capitalise to make it discrete, singular, finished.
But it is not finished. For a month I have existed with the feeling that the very top layer of my skin has been peeled off and I am red and raw and vulnerable.
And for a month, I have suppressed harsh words aimed those who have labelled me brave for sharing what happened. I do not feel brave.
I do not want to be brave.
To be a disabled woman is to exist in a world that flings rocks at you and then praises you for labelling the resulting pain. It never seems to occur to anyone to stop hurling things.
Here’s what I have to say on International Women’s Day: For me, sexism and ableism are one and the same.
Countless kind people have been in touch to reassure me that the agency I spoke to was “wrong” – that disabled people find love all the time.
But it is hard not to notice that many of these people are, well, men. Women, as we all know, are primed by society to take on caring roles. Men, on the whole, are not.
I know from many, many Hinge conversations that it is not actually my wheelchair that puts men off dating me. It is my voice impediment. It is my wobbliness. And it is my reliance on care. They look at me and think: burden.
So I hate to have to tell you this but, horribly worded and unreasonably nasty as it was, that dating agency email did not tell me anything I didn’t already know.
And if that shocks you, you haven’t been paying attention.
Disabled women are routinely told that our bodies are unattractive, and even more regularly infantilised and desexualised. Disability and dating could be called the last taboo if only there weren’t the even more taboo subjects of disability and sex and disability and motherhood to worry about. If we as disabled women struggle not to internalise these messages, is it any wonder that (most) men on dating apps have accepted them as truth?
Acquired at 13, 19, 23, the knowledge of all this slowly does something to you – all those years of rejection and denial of that essential part of yourself that needs companionship and intimacy.
As those around you reach life’s milestones and you do not, it leaves you feeling guilty for being sad when your friends are happiest. It leaves you wondering if you will ever shake this loneliness that has persisted for as long as you can remember. In the worst moment it tells you that no matter what you do, the world will always label you: different, different, different.
And even when you have done enough painstaking mental work to know that the problem is not you but society, when you can deconstruct ableism in real time, yes, it makes you feel unlovable.
I have spent a decade harbouring all this, scared that if I spoke it out loud it would become more real. Only recently have I begun to be honest about how I have been feeling all these years and trying to do something about it.
Signing up to the dating agency was a last-roll-of-the-die effort to reclaim some control, get some help, and kindle some hope. That went well, didn’t it?
In the weeks since the Series of Unexpected Events, people have asked me what I’m going to try next. A different agency, a new app, post-pandemic singles events?
The answer is no. I have spent too much time being sad about this thing that is beyond my control. I am not doing it to myself anymore. I still hold out some hope of a chance encounter with a friend of a friend, a colleague or, ideally, a kindly stranger in a bookshop. But I’m not allowing myself to be continually hit around the head. Enough is enough.
Do I sound brave to you now? I hope not.
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.
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.
How is everyone?
It’s been a bit of a time hasn’t it? I keep feeling like someone took the snow globe of my life and gave it a good shake. Things have settled now but nothing is quite how it was before.
Confession time, though: I haven’t really minded lockdown. Of course I’m immensely privileged to be able to say that, but after the initial few weeks of crippling anxiety, I’ve been ok. Now we can see friends again, I’m quite enjoying the slower pace of life. It certainly suits my body more – something to think about in the future, I suppose.
That being said, the past four months seem to have spanned a few years. Thinking of the things I watched or read in those early weeks feels like remembering the distant past. I think time has taken on a strange detached quality, but I’m more content than usual to just let it pass, to observe rather than try to harness it.
Maybe it’s because I’ve filled the time with enough books for several years. I’ve read and and and read There have been some novels – An American Marriage was exquisite and hauntingly suited to the moment – but mostly I’ve been reading nonfiction. Malcolm Gladwell featured strongly, and Matt Haig’s books on mental health really resonated with me. I keep lending them to people with a ridiculous urgency, but they feel so important to me.
If not now then when will I read the tomes I’ve long eyed? So I finally read Sapiens (it’s not great, really, is it?) and I’m finally tackling a shameful gaping hole in my knowledge with a hefty book on the history of Africa since independence, which is fascinating and horrifying in equal measure. On the To Read pile is another about the Middle East and one about the Troubles – other cheerier subjects also feature – so at least I’ll come out of lockdown more informed than I went in.
Books, both in the reading and the buying, have been my singular joy in these disturbing times. I have become a person who reads the book section of the Saturday paper (incidentally, please buy the paper) and who has a list of books I want to order. Sometimes I feel guilty that I am adding to the pile much quicker than I am getting through it, but why feel guilty about the little things that bring you happiness when the world feels big and scary.
A day with a book leaves me much less anxious than a day in front of the telly, even though in the midst of a panic attack telly is often the only thing that can help. Reading makes the good part of my brain, the part excited by information and not by feelings of doom, light up and push aside the part that feels like a spinning top.
With my job being literally, as friends like to say, to do the news, there have been a few times during the pandemic when I’ve half considered packing it all in to become a librarian. I wouldn’t really, but I hope that as things return to a new kind of normal, I remember that solace can always be found in a book.
In the meantime, I can be found at Foyles, building my lockdown library.
It started with Heartburn. The novel, you understand, by Nora Ephron.
It had come my way as a recommendation from a friend, as a book perfect for These Times. And it was. For three glorious days I was transported out of myself and lockdown London and into the life of Rachel (Nora) and the 1970s on the East Coast.
I really did, for the first time, forget about The Situation.
I finished the book and moved on. I read other things. But nothing else compared, nothing had the wit and style and compulsive energy of Nora’s writing. I was hooked.
So I sought her out and, deep in a writerly love affair, ordered the full collection of her writings. I liked that it is called The Most – not the best – of Nora Ephron. It is a tome, and the description fits her: she writes effusively. The most, she is.
I’m aware that it would be more proper to refer to her, as one does with writers, by her last name. But her nonfiction – she was a journalist and essayist much more than a novelist – is intensely relatable. Reading her this week, she has kept me company, has been my friend. She isn’t Ephron, she’s Nora.
And here’s the thing: I’d quite like to be Nora, too. Minus the divorces.
She is smart, witty, pithy. She digresses from her point. She is acerbic. With a phrase, she has conjured an entire personality.
She is honest, wise. She does not shy away from the hard topics: divorce, feminism, family, death. On love, she is mercifully quiet.
Wouldn’t it be something, to be as gutsy as Nora? I thought she must have acquired wisdom with age, but many of the essays in the book date from the 70s, when she was in her 30s. I guess I have about a decade to learn to put it all out on the field. We’ll see.
She writes about journalism, and you can tell how she despises much of the news industry. But she loves it, too, perhaps even better for knowing its flaws. I don’t know a single journalist who doesn’t feel the same way.
Her description of a mid-century newsroom is enough to make me nostalgic for things I never knew. It’s also enough to make me very glad I missed it, too. But it reminds me of why I do what I do: the excitement of a break, the thrill of holding people to account. I have much to learn.
And then there’s New York. It’s the backdrop to her writing, seeping through all her stories. She is, unarguably, part of the Manhattan elite. She hangs out with New York Times food critics and artists from the Village. It’s glamorous and creative and gossipy.
No doubt it’s also unattainable. But Nora’s New York chimes with my long-harboured desire to disappear to the Big Apple – for, I don’t know, six months, a year – and just write and meet interesting people and in some way live outside myself. Just for a little bit, just to see.
Of course you cannot, in fact, live outside yourself. If I were to disappear as above, I would still be chronically anxious – and being several thousand miles away I would likely be acutely anxious too. And yet I can’t help but feel the shock would force me to write, and cope, and be more gutsy. To be a little more like Nora, but without her inexplicable antipathy towards the New Yorker, my one true love and another cause of my ridiculous obsession with the place.
Just as Nora can’t let go of the ideal of being married, I can’t get over the ideal of the city, or rather, myself in the city. She is, like I say, very relatable.
And like all writers, she writes about writing. We can’t help ourselves. It makes me like her even more.
I often worry that while writing comes naturally I don’t really have anything to say. It should, I fear, be the other way round.
So I am going to try to remember Nora’s maxim, learned from her mother, that ‘everything is copy’.
Everything is copy. Even, it seems for me, Nora herself.
This week, satirical website the Onion ran this headline about the coronavirus pandemic:
Man Not Sure Why He Thought Most Psychologically Taxing Situation Of His Life Would Be The Thing To Make Him Productive
And we all laugh, right? Because we’ve all, at some point, declared that we’re going to learn French or get fit or make bread while knowing that actually we’re going to binge-watch Netflix dramas and eat a lot of pizza.
We’re aware enough to know that we can’t expect too much of ourselves right now – and if we weren’t, an Instagram quote post has surely put us straight by now.
So why do the daily Duolingo reminders make me feel so guilty?
And why did I, and I do not exaggerate here, recently declare to a friend that I should have written a book by now?
What is it inside my head that thinks that despite having my dream job at 25, because I am single, haven’t moved to New York and remain stubbornly bookless, I have somehow not done enough?
I have thought about this a lot this week and the answer is pretty clear: School.
I have been seeing a counsellor for the past few months and when I told her this she suggested I try to write about school, as a story, as if I was watching a little girl called Lucy and describing the things that happened to me happening to her.
This seemed, on the surface, as if it was the last thing on earth I would want to do.
And yet. I write to sort out my thoughts and feelings. On the subject of school, I have many of both – and none of them are good.
Seven years later, much of it is still too raw. One day I hope to be able to write about how they failed me as a disabled kid, but today is not that day.
But what I can write about now is how they apparently convinced me that nothing is ever good enough.
This messaging was so common that I accepted it as background noise; only with a few years of hindsight did I really understand it had been there at all, and only now do I see the toxic residue that it left in my brain.
Most of the incidents were too small and too common to remember, much less document. So here I present to you, the true howlers:
The time I had to do extra lunchtime Latin – Latin! – because I was on course for an A at GCSE.
The time I couldn’t be in the choir because I couldn’t read music on first sight.
The time it was pointed out by my economics teacher that I wasn’t good at maths because I’d got an A at GCSE, not an A*.
The time he made me retake one AS module because I got a B, despite getting an A overall.
And the one that truly made my jaw drop, the big one: The time, when I had collected by A-levels and was ecstatic about having got in to Warwick, that same economics teacher looked me dead in the eye and said “shame you couldn’t make the leap to the A*”.
Come to think of it, most of the issue was clearly that one guy. Last I knew he’d been promoted to deputy head.
They also used to give these bizarre assemblies about successful women, with the tag line that they were the kind of people who could have gone to the school (if they’d have been richer and, let’s face it, whiter). I presume the whole exercise was meant to be motivational and feminist, but it always made me feel uncomfortable.
I didn’t know why, at the time, but now I think it was the implication that with all our privilege – and god knows we had so much it was coming out of our ears￼ – we were on course to do something extraordinary. We were duty bound to be the next Marie Curie or Jane Austin. The possibility of happiness in ordinary things was simply never discussed.
The truly maddening thing is I knew it was all crazy at the time, and I sure as hell know it is now. All the true joy I’ve found in life has been in ordinary things; books￼, food, a good job and good friends. If anything extraordinary has happened, it has meant very little indeed.
So why does this need to do more affect me so much? It angers me that they wormed their way inside my head.
But I guess seven years of exposure would wear anyone down.
Seven years of pressure. Now wouldn’t it be ironic if I wrote a book about that?
I don’t know when I am going to see my friends again.
For me, that is the worst part of this coronavirus induced isolation we all find ourselves in.
I can live quite happily without the pub, the shop, the theatre. As a disabled person, I am used to interminable days spent on the sofa, body in meltdown, but they are always broken up by my friends. They pop in bearing shove-in-the-oven pizza, chocolate and wine, and faces full of companionship. I will miss them.
And I will miss my colleagues, their quick wits and their kindness and the buzz of them all in the office. Thanks to WhatsApp and Zoom they are not so far away as they could be, but it is hard to share a meaningful look over Slack, however much you try.
I cannot decide if I am more scared of the virus or the effect this is all going to have on my mental health. I am lucky; I do not live alone, and the carers I currently share the flat with are some of the best I’ve ever had. They’ll notice when I’m anxious and they know how to help. And so many of my friends have called to check in that I am far from feeling alone or lonely. I am grateful.
Skype has made it possible to continue counselling, too, which is a relief. But I worry about such a dramatic change in routine, especially such a curtailing of socialising. Living without a partner or family, I rely on my friends for a hug and a pat on the back, and I know I will feel this lack acutely. If I were Ania or Laura, I would soon be fed up with my toddler-like demand for affection, but I trust them to bear with me, as ever.
It is a strange time to be a chronically anxious person. The news, which has for years given me a job and a sense of purpose, leaves my nerves feeling raw and ragged. On my days off, I limit my intake to one half-hour bulletin a day. On working days, I take lots of beta blockers and try not to drink too much coffee.
The vague existential dread that has hung over me for months, making me feel maddeningly irrational, seems now perfectly reasonable. Of course I’m anxious, I think, there’s a pandemic on. This makes it hard to determine which of the panic attacks and tears are a rational response to the circumstances and which are my brain playing its usual catastrophising tricks. I guess we’ll never know.
The past six months have at least taught me some coping mechanisms to be deployed in these interesting times. In a panic, TV is better than reading, at least for me; especially something familiar. Joy is in the little things: a nice meal, a bunch of flowers, a particularly fluffy pair of socks. Aromatherapy, the very idea of which I was sure to scoff at half a year ago, works wonders.
Oh, and I call my parents multiple times a day. Sorry, mum and dad.
In an uncharacteristic move, I am finding the silver linings. With all this free time I am tackling my vast and ever-expanding to-read pile. Books really are things of such immense pleasure. Having waffled on about it for years I am finally learning French. Duolingo is surprisingly good and an engaged mind is a less anxious one; I’ll be fluent by the time this is over.
And maybe with time to think and process, I’ll even get some writing done. Although as any writer will tell you, I’m not desperate enough for that just yet.
This year I laughed a lot.
I faced my fears and made a film. I will never do it again.
I got to feel a warm breeze as I watched Caribbean waves.
I read good books and not enough of them. I lost and found myself in stories.
This year I began learning to be kind to my body. I am still trying.
I was not kind enough to my brain and I paid the price.
I made it through. I asked for help. I am taking one day at a time.
This year I loved.
I was heartbroken.
This year I started a writing course and quit after one session. I remembered I knew how to do it all along.
I tried very hard to put myself first. Often, I failed.
I stood from my wheelchair and clung to a railing to watch the sun set over Manhattan.
I looked for Rocs and I found him.
This year I covered an election for the BBC.
I interviewed for jobs and didn’t get any of them. I ended up doing what I love, anyway.
This year I cried a lot.
I was lucky.
As ever, I was so proud of Stan and Boo.
And over and over again, I was grateful for the army of friends who made sure I got this far.
This year, they were simply the best.
I’ve always been good at this, haven’t I? Reaching people with words on a page. And it’s always been how I work things out, and right now I really could use with working some things out. So even though this feels mad to write about, today is all about challenging the stigma around mental health. Here goes…
I’ve just gone back to work after over two weeks off. On social media, I keep saying I’ve been ill, and I have. Just not in the way I’ve implied.
The truth is this: I suddenly couldn’t cope with, well, anything. A combination of exhaustion, a physical illness, insomnia and a bad reaction to new anxiety medication caused a rapid spiral that left me crying in my mother’s bed, feeling like a child. I couldn’t sleep, I couldn’t think, and I was so, so scared.
I’m doing much better, thanks to changing meds, establishing a sleep pattern and giving myself a rest. I’m ok, and I doubt the exact combination of rubbish that lead me to such a low will ever happen again. But I want to stop lying.
I want to peel back the brave features I have subconsciously plastered on my face for as long as I can remember. I want to say that sometimes I am exhausted and everything is too hard. I want to say that often I need help. I want to say that I am not always fine.
Ironically, most of the people around me know this already. In pretending I have successfully lied to them I have actually been lying to no one except myself. I have put so much pressure on myself to always be ok that I couldn’t recognise that that in itself was a pretty sure sign that I wasn’t.
The causes of my anxiety are not hard to identify: school bullying, a loved but high pressure job, a society that refuses to accept the disabled body I live in. I could go on.
The things my brain tells me are cruel: that my friends dislike me, that I am not good enough at work, that I will never, somehow, belong.
The rational knowledge that I am being irrational only serves to make me feel worse, as if I should know better. Although, of course, I do know better, I just don’t feel it. I have spent so long trying to understand why those two things are not the same.
Last year was tough. I had lots of problems with care, work was uncertain and my love life… well, the less said about that the better. And, heartbreakingly, we lost our beloved Rocs. There are still no words for the sadness I feel for my family.
On the face of it, this year has been so much easier. And yet I have struggled with one thing time and time again. As exhaustion from insomnia and general cerebral palsy has increased and I have experienced real pain, I have been forced to miss so many days at work. And I have felt so guilty and so angry.
Not guilty in the sense that I am doing something wrong. I know I am trying. I know it’s not my fault. But guilty because I’ve been breaking a fundamental promise I made to myself many years ago: that my disability would never affect my work, even if it shaped everything else.
That promise was naive, but I needed to believe it and now I can’t. So I add my physical ability to do my job to the long list of things I cannot control, and it makes me angry. And so I try to fight reality, and it makes me anxious. This, right here, is the first time I’ve admitted this.
This post is not – I repeat, not – a badly hidden ploy to get my brilliant friends to tell me they like me or for my colleagues to reassure me about my contribution to our work. Frankly, if it was I would at least disguise the whole thing much better than this. It is just an effort to be honest, with you and for once with myself. It is an effort to start – maybe, hopefully – asking my brain to be gentler with me. I am doing my best.
I can only hope that writing this is a sign to someone else that they, too, can be honest. That it’s ok, because you don’t have to be fine all the time.
At the beginning of the year I set myself a to do list. Naturally I am somewhat behind on nearly all fronts, but some progress is being made. I have indeed begun learning French and some digital stuff, mostly Photoshop. Both seem unreasonably complicated (I just don’t understand how I am supposed to remember the grammatical gender of a tomato), but it is nice to feel the old cogs in my brain start to whir again. I have even been wasting a little less time by just reading and reading and reading. I keep finding fantastic writers and then reading everything they’ve ever written; my latest obsession is Kathryn Schulz, whose New Yorker piece from last year, ‘The Really Big One‘, is guaranteed to knock your socks off.
But actually most of my time has been spent dealing with emails and making or waiting for phone calls. I have concluded that this, rather than the freedom to make your own decisions or the ability to vote, is the defining state of adulthood. Like school, it is very dull and has delayed results. But, finally, all the arrangements have been made and I am starting a month of work experience at the BBC on Monday! I am very excited to be spending time across four teams at the iconic Broadcasting House: Newshour and Newshour Extra, which are the World Service’s in depth news programmes, BBC2’s Victoria Derbyshire Show and Newsnight, where basically all my favourite journalists work. To say I am looking forward to it would be a laughable understatement.
In preparation, I have become very good friends with iPlayer, listening to all the recent episodes of the programmes I will be working on. In particular, I have really enjoyed Newshour Extra – I rarely have the radio on when it is broadcast so it wasn’t a programme I had listened to before, but the format makes it highly informative. Last week’s episode on Libya and where it could go from here was some of the best coverage I’ve heard of a country which most of the world has forgotten about.
So things are moving forward. I still don’t write enough and I haven’t got much further in finding an actual real job (not withstanding getting through to the test stage of the civil service Fast Stream application). I still don’t know anything about coding or the French past tense. But going into work for the next four weeks is just what I need, and I hope it’ll take me on to other things as I learn more about broadcasting. Now I’d better post this and go back to searching Guardian Jobs and listening to Newshour.
There are few reasons these days to be optimistic. A hard Tory Brexit is going ahead almost unopposed by a useless Labour party. Our PM is fawning over the newly inaugurated Trump, who is turning out to be just as bad as we feared for issues as diverse as women’s right, foreign affairs and immigration. The press is under unprecedented attack; the truth now comes in real and alternative forms. Comparisons to the 1930s which once seemed overblown now look prescient, as Trump signs orders targeting Muslims and calls for a registry reminiscent of the Nuremburg Laws. It’s a dark and depressing outlook for the next few years. I see no reason to pretend that we are doing anything but going backwards; denying the problem only adds to it.
And yet, raise your eyes from the immediate future to the horizon of the next decade and there are perhaps some reasons to hope. While, undoubtedly, bad things are happening at an alarming rate, the old law of equal-but-opposite reactions seems to be holding firm. As Trump reinstated the global gag rule, which stops federal funding for any agency or NGO operating outside the US which so much as mentions abortion, millions upon millions of women and their allies marched against the inauguration of the man they call the “creeper-in-chief”. Madeleine Albright has declared herself ready to register as a Muslim in order to frustrate his bigoted efforts, and I’m willing to bet that thousands of Americans would follow her lead. As Stephen Bannon tells the media to “keep its mouth shut”, subscription money is pouring in to liberal publications like the New York Times for the first time in years; it may not be enough to save independent, fact-based journalism, but this is a sign that a large section of society is unwilling to give up its freedom of speech and its ability to hold government to account. As a horrifying combination of nationalism, authoritarianism and white supremacy attempts to squash the West’s liberal spirit, so that same spirit forms the backbone of the fight back.
Today is Holocaust memorial day, and quotes on the relevance of the event to current circumstances are flying around the liberal parts of the internet. One stands out as a reminder of how quickly those who claim to protect us can become our persecutors, and how a lack of solidarity can be everyone’s undoing:
First they came for the Socialists, and I did not speak out—
Because I was not a Socialist.
Then they came for the Trade Unionists, and I did not speak out—
Because I was not a Trade Unionist.
Then they came for the Jews, and I did not speak out—
Because I was not a Jew.
Then they came for me—and there was no one left to speak for me.
We must make sure that we speak up and stand up for every wrong, not just the most egregious or the most personal. Not only does this prevent normalisation, it ensures that hate is always met by solidarity. As Trump, the Brexiteers and the online alt-righters try to divide, we must show a unity beyond what they could ever muster. I know we can do it: the women who came out across the world to stand with their American sisters and the marchers in DC raising awareness of global injustice are all the evidence we need of that. The key now is to make sure that 21st January 2017 does not become a unique event, but just the start of protest after protest that eventually and inevitably grind down the resolve of those who try to silence us.
It will be a long and arduous war of attrition, and we may not win many battles along the way. But as women throughout history have always shown, as long as we get up again, we are only down – never out.