Ten years on from ten years deaf: The problem with ‘those’ videos

August marked ten years since I underwent my first stapedectomy operation – the first of two – to replace my inner ear bones with prosthetics and, in doing so, ‘restore’ the hearing I began to lose at the age of eight – which is all to say, I’ve now been ‘hearing’(ish) for as long as I was ‘deaf’.

Friends I knew ten years ago may remember how emotional that time was for me: hearing a man’s voice behind me and realising that, in the years since I’d last heard him speak, my brother’s voice had broken; going around the house re-acquainting myself with environmental noises (running water, kitchen appliances, floorboards) which I’d once taken for granted but which I had, at some point, gradually and imperceptibly lost; sitting in a room at the Brittle Bone Society’s annual conference in utter amazement that I could hear Dom Hyams drumming *in a different room* i.e. I had developed a superpower and could now *hear through walls.* 

But thinking back on the past decade, that time is also tinged with sadness. Sadness that at the age of 18, despite learning BSL from a wonderful Deaf teacher, I still believed that my deafness was a flaw which needed to be fixed. Sadness that while I had many brilliant (and eternally patient) school friends, two of whom even learned BSL to help me communicate, at the age of 18 I didn’t have a single deaf friend. Sadness that despite late nights learning about the disability rights movement online, I believed the social model didn’t apply to deafness because my experience was so deeply entwined with a narrative of exclusion, isolation and loss.

In 2019, I was lucky enough to start working as a content editor for the National Deaf Children’s Society. It is so rewarding to see deaf children and young people with the kind of confidence I always wished for; and it is also reassuring to learn that the difficulties I faced as a deaf child in a mainstream school (listening fatigue, issues with working memory, discrimination from teachers who refused to wear my radio aid) were not character flaws but common problems for deaf children growing up in a hearing world.

“I feel like I don’t fit anywhere – I’m not part of the deaf community, but I don’t fit in the hearing world either,” is a line I regularly hear from deaf young people – and one which I wrote over and over again in my teenage diary. I’m grateful to play some small part in helping those children and young people to access the education, healthcare and peer support they need to develop positive deaf identities.

Ten years post-op, I now describe myself as hard of hearing. Despite my audiogram showing a bizarre squiggle covering every level of deafness, from mild to profound, I have what I like to call ‘perfect hearing’: ‘hearing’ enough to hold a conversation with my (admittedly endlessly patient, oft-repeating) flatmate without hearing aids in, as long as the flat is quiet and I can see her face; ‘deaf’ enough to sleep through the trains which rattle past our balcony and keep her awake, even with my window wide open. When office conversations turn to Love Island, I can easily turn my ears off and ignore it. When the conversation turns to the latest Netflix true crime docuseries, I can tune back in.

And yet, and yet… the other day I spoke to a parent whose toddler wasn’t diagnosed as deaf until the age of 2.5, despite having been profoundly deaf since birth. They was close to tears as they described the moment of their child’s cochlear implants being switched on.

“When you google ‘cochlear switch-on appointment’, you see all those videos of kids crying and happy, responding to their mum talking,” the parent explained. “But it is wasn’t like the videos at all.”

Image: Google search results for ‘cochlear implant switch-on’ include multiple clickbait videos titled ‘baby hears for the first time.’

We all know the videos that parent was talking about: baby hears for the first time. Baby cries tears of joy hearing mum say, “I love you.” Those videos are misleading at best and manipulative at worst, because they present a simplistic world in which a person can instantly switch between deaf and hearing. There’s a similar vibe in those videos of ‘learning to walk after my amputation’: a sped-up clip in which we see the amputee go from hospital bed to athletics track within seconds, skipping past the months and years of difficult, painful rehabilitation, and entirely bypassing the fact that an amputee proficient in using a prosthetic limb is still an amputee.

And the worst part is that I played my own part in perpetuating that harmful myth. In the months and years after my hearing surgeries, my mum and I would tell, over and over again, the story of how my surgeon hit a tuning fork the day after surgery and I wept at hearing the sound; the ‘moment’ I heard running water; the ‘moment’ I heard my dad’s voice. When we tell the stories of those moments, we neglect to mention the day I left audiology in floods of tears after learning that my hearing was still not – would never be – perfect, that I still had to wear hearing aids. We skim over the fact that growing up deaf means that my brain forgot, and will never regain, fundamental neural pathways that allow those who grew up hearing to connect sound with meaning. We don’t mention the fact that, ten years on, I still struggle to identify everyday sounds; I still can’t watch telly without subtitles; I still lip-read every day, because lip patterns still and will always mean more to me than speech sounds. And most importantly, we don’t point out that all of those things can be true at once. I love listening to music. I find it really hard to understand speech. I used to be deaf, and now I can hear, and my experience of deafness continues to shape my experience of hearing.

The best thing I ever did with my hearing: watch Britney at Brighton Pride 2018. Later that evening I had a crowd of ~15 kind strangers searching the grass for my missing hearing aid, which turned out to be caught in my own hair.

The truth is that disability and deafness are not binary, and being hearing is not necessarily preferable to being deaf. You don’t flip a switch and swap from being one to the other: walking to wheelchair; deaf to hearing; blind to sighted. Had I chosen not to have surgery and to stick with being deaf, I wouldn’t have suddenly become fluent in BSL, either. Communication is learned. Identity is a process. 

I can’t ever say whether I should or shouldn’t have had my hearing surgeries, because my experience of deafness was so firmly embedded within a hearing world. Had I had greater access to the Deaf community during childhood, perhaps my choice would have been different – or perhaps I’d still be where I am today, fumbling along as a little of each. What I can say with confidence is that I am absolutely grateful to have had those ten years of deafness, because they gave me a perspective without which my life would have been poorer. And I’m also grateful to have my current level of deafness, because as nice as it is to be able to listen to music, it’s also really nice to be able to sleep soundly beside a train track. And who needs to talk about Love Island, anyway?

25 years on from the DDA, how far have we come?

The 9^th November 2020 marks 25 years since the Disability Discrimination Act (DDA) came into force in the UK. Arguably one of the biggest events in UK disability history, the Act made it illegal to discriminate against people because of their disability. It paved the way for so many of the adaptations which disabled people like me rely on every day, from ramps onto trains and buses to hearing loops and Braille buttons in public buildings. The DDA got us physically in the door to employment (employers were no longer able to discriminate against a potential candidate because of their disability) and entertainment venues (cinemas were no longer able to turn wheelchair users away on the grounds of their wheelchairs presenting a ‘fire risk’).

As a teenager learning about disability rights and politics for the first time, I remember watching in astonishment the footage of the protests that led to the DDA: people in wheelchairs and mobility scooters handcuffing themselves to buses and trains; prominent disability rights campaigners storming television studios and even parliamentary buildings; the outrage and strength of this huge bunch of brilliant protesters coming together to show the world that disabled people deserved equity of movement, entertainment, employment and education.

I don’t use the word lightly when I say I have long found stories of those protests, and of the work of groups like the Direct Action Network, truly inspiring. In my more tempestuous tirades at bus drivers who refuse to let me board, I’ve been known to shout ‘people chained themselves to buses for that wheelchair space!’ at the departing behind of a number 78.

Mark and Tracey helping me board a train. No tirades needed.

Because as grateful as I am for the truly remarkable people who campaigned for the DDA in the 90s, and for the Equality Act in the noughties, and for all the many protesters who paved the way before then, the fact is I still can’t always get on the bus.

In 2008, 13 years after the DDA, it took my secondary school six attempts to find me a work experience placement (the first five offers having all been withdrawn on the grounds of ‘health and safety’).

In 2014, 19 years after the DDA, I was boogying away on the dancefloor of the Cambridge branch of Vodka Revs (I know, the shame), when staff approached, asked me to transfer to a bench and then took away my wheelchair on the grounds of it being a ‘fire risk’.

In 2015, 20 years after the DDA, I started a job where my employers made sure I had access to an accessible toilet in the office but where social events and summer parties were regularly held up flights of stairs.

In 2019, 24 years after the DDA, I was branded ‘uncooperative’ and almost sectioned for refusing to attend the mental health unit to which I’d been referred because it didn’t have a lift.

It’s now 2020, 25 years after the DDA. I live within a ten-minute walk of four different tube stations, and I can’t get into any of them. I’m regularly refused access to buses or trains because there’s a pushchair in the wheelchair space, or because they can’t find the key to the ramp, or because I was supposed to book 24 hours in advance. As much as I want to support small businesses, I often end up shopping and eating in chains because most of the independent shops, cafes and restaurants where I live have steps to get in, narrow doorways or shelves too close together for me to move around.

These things might sound minor – and they are, especially compared to what people had to go through 25 years ago – but microaggressions wear you down. Because when you’re a teenager who wants to be a journalist but isn’t allowed to visit the local paper, or a student pulled away from the dancefloor to sit alone at the side of the club, or a young graduate made late for an important business meeting because the lifts are broken and you have to go seven stops back on the District line to the nearest accessible station – these things all add up to say, ‘You’re not like the rest of them. Your body is a problem. You can’t keep up.’

So yes, it’s been 25 years since the DDA. The progress made before and since 1995 should absolutely be celebrated. But the fight is far from over.

How to Be Broken: Why mental breakdown is like a broken leg

At the beginning of May, after a six-month battle with the old black dog culminated in three extremely public, extremely hysterical breakdowns within a week (huge apologies to my colleagues, friends, and the staff at Paddington station…) I was finally signed off work with depression. Having lived with mental illness in various forms for the best part of 18 years, I’ll admit this wasn’t my first rodeo – but it never gets easier. It’s a catch 22: the longer I spend in bed with the blinds closed, watching life pass by in a hideous circus of other people’s Instagram stories and Twitter posts, the easier it is to agree with the internal voices of doubt, disgust and self-hatred which put me there in the first place.

As luck would have it, this particular episode coincided with a broken foot, something I’m much better equipped to handle. Whilst using a wheelchair full-time means I now break bones far less often than I used to, the familiar circumstance of physical healing became something of a guide for the cerebral, and I began to see the parallels between mental and physical recovery as not just metaphorical – but actively useful.

So, if you’re struggling with your own recovery – whether mental or physical – here it is: how to treat a mental breakdown like a broken leg.

1. When the bone first breaks, everything else stops. All your big plans go out the window; taking life one day at a time, you have to relearn the basics: how to sleep comfortably; how to get out of bed; how to shower, clothe, and feed yourself. The priority at this time is keeping yourself alive and well – there’s no point worrying about the bigger picture until you’ve mastered the basics. The bigger picture can, and will, wait for you to get better.
2. Recovery takes time, and trying to rush that recovery will make things worse in the long term. Some days it feels better so you try to do more – try standing on your injured leg or going outside – and then the next day it feels much worse. That’s normal, and it doesn’t mean you’ll never be better, but you have to rest. Skipping the rest and trying to power through will only make things worse.
3. Recovery isn’t linear. There are good days and bad days, and they’re not necessarily in the order you’d expect, but don’t get disheartened. Zoom out. It might be hard to tell day-to-day, but chances are, things are slowly getting better overall.
4. Lots of people won’t understand how long it’s taking to get better. They’ll be surprised you’re ‘still’ in that boot, or ‘still’ off work. They’re lucky not to understand. Don’t take it personally.
5. Other people aren’t telepathic. They can’t tell you’re in pain.
6. There is no shame in asking for help. In fact, the opposite is true: it’s much better to ask for help when you can than to silently struggle alone until things get so bad you end up in hospital.
7. Sunshine is good for you, but the fact that it’s sunny doesn’t mean you can magically whip the cast off or jump out of bed. You might feel better if you can get outside, but try not to feel like you’re ‘wasting’ the sunshine just because your calendar of good and bad days isn’t aligned with the BBC Weather app. Going back to point 2: trying to do too much too soon WILL make things worse in the long-term.
8. Once the cast is taken off and the visual clues have been removed, even your most caring family and friends will forget you were ever out of action. They’ll expect you to be just as active and resilient as you were before. The fact that they’ve forgotten that doesn’t mean they care any less, or that they’re judging you for not being better, but you might need to remind them that, beneath the surface, you’re still healing.
9. No two breaks are ever quite the same. Sometimes it’s an easy fix, a couple of paracetamol and four weeks in a sling. Sometimes it takes months or even years to recover. Sometimes the bone is never quite the same again. It’s no use comparing your own broken ankle to the time your friend sprained her ankle, or the time your colleague broke his back, or even the time you yourself broke the same ankle a few years ago, and you seem to remember it healing more quickly, with less fuss, because this is a different break. Our brains and bodies are unique, and that makes them wonderful – but they’re not infallible, and it is neither selfish nor self-indulgent to take extra care.
10. Even after you’re better, certain things will cause pain in the place where you were broken. Certain activities might make you ache for a few days, or might even cause injury again. If that happens, it’s important to look after yourself and to take the time you need to stay well – otherwise you might well end up back in hospital with a new break.
11. Mindfulness is not the answer to everything. If someone you know is a bit broken – whether physically or mentally – by all means invite them to a yoga class, but don’t take offence if it’s not for them. Ask if there’s something else they might like to try, and be prepared to listen to the answer.
12. Even if you can’t face yoga, do your physio – whatever that means for you.
13. Sometimes you get into a cycle of injury which it feels like you’ll never escape. You start to forget the times you were ever well. But if you’ve survived these things before, you can survive them again. You might need specialist treatment – long-term psychotherapy, or an Exogen machine, or a change of medication. Life might be different now, but that doesn’t mean it’s over. Give your leg a chance. It’s worth it.

Book: ‘A Little Life’

Every so often, a book comes along which reflects its reader so powerfully, so poignantly, that the reader in question not only recognises that reflection, but is inspired to change. It’s an experience which I myself have felt only a handful of times: aged eighteen, reading The Journals of Sylvia Plath, a collection which opens with a depressed eighteen-year-old Plath feeling undeserving of her place at college; later, at university, reading the life of the disenchanted Cambridge student in Jacob’s Room; later still, recovering from a major overdose, reading Bao Ninh’s account of PTSD in The Sorrow of War. All these novels held a special resonance with me, but all were nevertheless written about subjects which themselves feature regularly in literature: depression; trauma; youth.

Throughout the eight-hundred-year-old canon of English literature, few novels feature physical disability. Even fewer allow the disabled character to take centre stage. The first novel I’ve ever read in which the disabled character is not conveniently stored in an attic bedroom or miraculously ‘cured’ by a heroic protagonist, A Little Life brought me to tears.

The antithesis of the meek disabled sidekick, or the ‘inspirational’ disabled hero of Facebook memes, Jude does not accept disability without a fight. It does not ‘make him who he is’; his scars are not ‘tattoos with a story’. Like many people living with degenerative disabilities, he stubbornly clings to the idea of walking long after it has ceased to be feasible. He pushes his body further than it can go and experiences agonising pain as a result, and his friends despair because they don’t understand why he wouldn’t just use a wheelchair; why he wouldn’t just ‘take painkillers’. Sometimes he can walk, and sometimes he has to crawl from his bed to the bathroom to vomit out of sheer pain, and the only explanation for this is that he must, at one point, have ‘overdone’ it; he tried to do what everyone around him does so easily, and now he pays the price. As petty as it may seem, it is so, so frustrating to hear able-bodied friends suggest you ought to know better than to expect the same things from your own body that they expect from theirs.

Jude remembers running. He remembers how it felt to walk. He hates his scars because they remind him of traumas he never deserved, traumas that nobody ever deserves. Later, having accepted their essential uselessness, Jude becomes apathetic towards his legs; ‘the bastards’, Andy calls them, with the gallows-humour so commonly adopted by those whose brains are carried by bodies which refuse to play ball.

And yet the gallows-humour is a thin disguise for a brutal fact: Jude’s disability hurts. I’ve written about pain before, because I’ve always felt it needs to be written about: chronic pain is isolating, and lonely, and sometimes it just makes life really fucking hard. As much as we cripples need role models who win Paralympic medals and climb mountains and make astonishing comebacks from pioneering new surgeries, sometimes we also need to hear about those who wake up every morning and try to work out, without moving a muscle, the state in which their body is going to make it out of bed today.

Narratively, A Little Life is a little lazy; as a friend of mine put it, ‘the same bleak things happen over and over again for six hundred pages’. Everything that could possibly go wrong goes as wrong as it could possibly go, pushing every form of human pain to such an extreme that critics have labelled the novel ‘abuse porn’.

Cynicism aside, however, Yanagihara’s writing is beautiful, and his descriptions of life inside a failing body, of excruciating pain, are sheer and raw and breath-taking in their accuracy. I want all my doctors to read it. I want all of anyone’s doctors to read it. A passage:

‘He felt in those minutes his body’s treason, how sometimes the central, tedious struggle in his life was his unwillingness to accept that he would be betrayed by it again and again, that he could expect nothing from it and yet had to keep maintaining it. So much time, his and Andy’s, was spent trying to repair something unfixable, something that should have wound up in charred bits on a slag heap years ago. And for what? His mind, he supposed. But there was – as Andy might have said – something incredibly arrogant about that, as if he was saving a jalopy because he had a sentimental attachment to its sound system.’

Yanagihara writes about things which are difficult and upsetting, and many of his readers got upset about that. Here’s the thing: difficult, upsetting things happen. It’s hard being disabled, or in pain, or mentally ill; it’s hard to recover from abuse, or violence, or trauma; it’s hard to stay alive for the sake of those around you when every bone in your body wants to call it quits. But knowing you’re not alone – knowing someone else knows how you feel, understand the complexities of your little life – well, maybe that makes it a little less hard.

Literature has the capacity to teach us about the unfamiliar, and that’s important. And yet, perhaps just as important is its capacity to put into words those things we already know.

On Grief: Remembering Lauren

Nine years ago today, my childhood friend Lauren passed away from cancer. Last night, sleepily browsing Facebook and not thinking of the date, I noticed that her mum had posted a photograph of Lauren on the Facebook page set up in her memory. Catching myself by surprise, I burst into tears.

Grief is funny like that. It lies dormant for years, held safely at bay, and then it bursts back out again. So, for Lauren, did cancer.

To this day, Lauren remains the closest thing I’ve ever had to a big sister. She taught me about boobs and bras and boys, how to use sanitary towels and why it is sometimes important to eat ice cream even if it’s raining. She took me shopping, slipped me chewing gum and took me on lengthy walks with a neighbour’s Yorkshire terrier on which, despite never going very far, we would somehow invariably get lost. We sang a lot. When I started secondary school, she was forever popping up in unexpected places to make sure I was ok, cuffing me into bear hugs. We shared picnics and playtimes, and I loved her in that way you love someone who has never not been there.

Cancer was cruel to Lauren. It stripped her bare. The very last time I saw her, I was terrified; she was thin, weak and bowed by excruciating pain. I didn’t know what to say. I still simply couldn’t believe that she wouldn’t get better. That I allowed cancer to cloud my vision that day remains the single greatest regret of my life.

They say it takes a village to raise a child, but in Lauren’s case it was very much the child who raised the village. In the small, close-knit community in which we grew up, she played a huge part, and I think she taught everyone she touched some very important lessons. She taught me more than I ever wanted to know about dying, but she taught me even more about living. In her sixteen years, Lauren did an awful lot of living.

Lauren liked pink – she wore pink to her prom, and we wore pink to her funeral – but when I think of her, I don’t think of pink. I think of this pair of multi-coloured, platform-heeled flip-flops she used to wear to choir practice. She was bigger than words, bigger than one colour, bigger than life itself.

And I guess that’s why it’s ok for grief to keep coming back, every once in a while. It reminds us of those things we never want to forget.

On Assisted Dying: Why Suicide Should Never Be Okay

Where do I stand on doctor-assisted suicide? Until Friday, I really didn’t know. But on Friday morning, armed with a natty camera, I was dispatched to Woolwich to take photos of an advertisement produced and delivered by my company on behalf of The Economist. It’s a digital billboard playing a long video of a hospital ceiling, followed by the words, ‘Could you live a life like this? Why doctor-assisted suicide should be legal.’

Sitting in the sunshine, snapping away and thinking about my plans for the weekend, I began to wonder how exactly I felt about the message I was photographing. And then it occurred to me: what happens if we take away the word ‘assisted’? How is it that, one day after ‘World Suicide Prevention Day’, the British government was fiercely debating whether suicide is, in fact, okay?

The crucial difference is that assisted suicide is largely reserved for the severely ill or disabled. Suicide is to be prevented, but only if you’re ‘well’.

I’m disabled and have a long history of suicidal thoughts and behaviours; when I’m mentally unwell, assisted suicide strikes me as perfectly rational. Although, wheelchair aside, I’m lucky enough to be active and articulate, I also live with chronic pain, which is one of the major causes of my depression. When I’m mentally well, although I’m still in pain, I don’t want to die. Yet were my physical condition to be significantly worse, there are doctors in the world who, instead of referring me to a psychiatrist for drugs or therapy, might respond to those thoughts of suicide by actually helping me to end my own life.

Let’s get one thing clear: it’s not disability that makes me want to die, it’s depression, which is partly caused by pain. So why, instead of focusing our efforts on relieving that pain, or curing that depression, or solving whatever other issues lead a severely ill or disabled person to thoughts of suicide, does the pro-euthanasia movement leap straight to the morbid conclusion?

According to the able-bodied society in which we live, severe disability one of the worst things that can happen to a person. Pregnant women frequently say they don’t mind how their baby turns out, as long as it’s healthy. The able-bodied regularly turn to the disabled and comment on how brave we are; ‘I couldn’t do it if I were you.’ (Newsflash: disability doesn’t happen only to a select group of people born with an innate ability to deal with it. It happens, and you deal with it however you can.)

The able-bodied, pro-euthanasia world tells itself that a life lived with severe illness or disability is not a life worth living. They’ve recently coined the hashtag-friendly catchphrase ‘right to die’; ‘death is a human right!’ they exclaim. And yes, I’m aware that there are sick and disabled people at the forefront of the pro-euthanasia campaign, but these are the same people who have been let down by clinical inability to alleviate their symptoms and their feelings of hopelessness.

Until my first suicide attempt, none of my doctors had ever suggested that I might need some form of counselling or psychological therapy to help with the impact of my disability. We need to adopt a more holistic approach to illness, managing not only its physical but also its psychological effects. We need better pain relief, better technology, better care. We need to stamp out the idea that some lives are not worth living, and that suicide is sometimes okay.

Earlier this year, battling through my most severe depressive episode to date, I would have jumped at the chance for an easy way out. Were I to be a more significantly disabled person living in a country where assisted suicide was legal, that chance would have been on the cards. The thing is, I got better. Although it might take months or years each time, I always do.

On Risk: Leaving for Vietnam

(This is my quickest blog post ever. Excuse syntax errors.)

For as long as I can remember, going backpacking has been my number one pipe dream. Since childhood, I have dreamt of my grown-up self – lean, tanned and inexplicably able-bodied – travelling solo across exotic countries, diving into oceans, hitch-hiking in dusty pick-up trucks across countries I’ve never even heard of.

Yet my life has largely been defined by cautiousness. I have poor balance, and if I fall over I’ll almost certainly end up in plaster for six weeks; I am, I think quite reasonably, careful about every step I take, every crack in the pavement or step on a staircase. I never lift anything which I think might be heavier than I can manage. Whether consciously or unconsciously, I monitor every movement I make which might break my body.

When I arrived at university, I took risks. I walked further than I ever had done before. I went out dancing in crowded clubs. I walked on cobbles. Once, I even ran (shoutout to Somil for holding my hand all the way around Cripps court in case I tripped). The risks didn’t pay off: my legs began to crumble, and I now use a wheelchair almost all the time. By the end of my degree, those dreams of travelling seemed further away than ever.

I’m not sure exactly what changed, or when, but in February this year I decided that I wanted to go to Vietnam, and somehow I convinced myself that this was something I might actually be able to do. Vietnam is not a wheelchair accessible country. I don’t know any disabled people who have been there, and can only find two accounts of wheelchair users visiting the country online. I don’t know what their hospitals are like. I don’t speak the language. I don’t know how to say ‘brittle bones’ in Vietnamese.

What I do have is a broad-shouldered, nearly-six-foot-tall brother who has been looking after his ‘big’ sister pretty much since the day he learned to walk. I am so grateful for all the people and events which have given me the confidence to make this trip, and above all I am so grateful for the brother who will help me get there. In Vietnam I will be completely dependent on him to carry both me and our bag, and to push and carry my wheelchair. I’m not sure whether he’s brave or mad, but I know there’s nobody I trust more.

I don’t expect the next few weeks to be dreamily easy, but I have everything crossed that nothing goes disastrously, and that we are taking a risk which might just pay off.

I won’t be able to update my blog in Vietnam, but I will write about my trip once I’m back for other wheelchair users who might want to make a similar trip!

The Morning After the Night Before: General Election 2015

This piece was originally written for and published in student newspaper Varsity.

I am sitting in my college ‘buttery’ (canteen) the day after the general election, giving an exasperated monologue on what the next five years will mean in terms of welfare.

“They’re forcing people who can’t work into work, and at the same time capping Access to Work so that disabled people who want to work can’t even work anyway!”

“Well,” says the Tory voter sitting opposite, “They can just work from home.”

It’s a comment which says a lot about what five years of largely Conservative government has done to widespread attitudes towards the ill and disabled. In and amongst the celebrity exposes and comment pieces about Josie Cunningham’s boobs, articles about fraudulent Disability Living Allowance (DLA) claimants being ‘caught’ playing golf or walking to the shops feature so regularly in the Daily Mail that you’d be forgiven for thinking every other disabled person is secretly running marathons in their back garden. Quite aside from the fact that not all disabilities affect a person’s physical mobility, and that many mobility-impaired people are still occasionally able to walk, the regularity with which these articles appear represents a gross overestimation. In fact, DLA fraud is somewhere between <0.1-0.5%, depending on which reports you read. The only benefit with a lower fraud rate is Incapacity Benefit. Who claims incapacity benefit? Oh, yes: the sick and disabled.

‘Bye ‘bye benefits!

The British media is feeding the public a lie, and it’s one which has serious social ramifications. Disability hate crime is on the rise. Throwaway comments about so-called ‘benefit scroungers’ are becoming increasingly socially acceptable. Maybe it’s just because I’m growing up, but in the past few years I have experienced many more strangers making unpleasant comments when I dare to stand up in public than I used to. Back in 2009, standing to use an escalator or walk down a flight of stairs rarely drew anything other than a smile or an offer of assistance. Now, whilst on days when I can’t stand I still receive almost ubiquitous kindness and offers of help, the minute I stand up I am ignored, frowned upon or even verbally abused.

As a lady I met on a train the other day told me, ‘If, on a good day, I’ve managed to walk down the street unaided, that’s a major achievement. I feel like I deserve congratulation. Instead, I am gossiped about, accused of not needing a wheelchair, and have even been reported for benefit fraud.’ Indeed, despite such low fraud figures, the second result on google when I type in ‘dla fraud’ is ‘dla fraud hotline’.

In 2012, Iain Duncan-Smith told the Telegraph that, over the past ‘few’ years, DLA claimants had risen by 30%. That’s not because there was more fraud. DLA was only introduced in 1992; as more people learn about the benefit, more people claim it (I only began claiming DLA in 2009). The other major factor is that, as medicine improves, higher numbers of disabled children are living into adulthood. Disabled children have begun this awkward habit of surviving. What a crime.

Whilst we might be alive, not all of us are capable of work. There are many people with physical and/or mental or intellectual disabilities and illnesses so severe that a ‘good’ day is one where you make it out of bed. There are many people with fluctuating disabilities and illnesses who might be capable of working on a ‘good’ day, but for whom good days are rare and unpredictable. What employer would employ someone who will only work two days a fortnight, who won’t know if they can work until that morning, and who might leave at any point for a lie-down?

I personally won’t be affected by the cuts. The privilege of a Cambridge education and the sort of intelligence which society values means I have a job lined up for when I graduate, in an office which is already sufficiently accessible that I won’t need Access to Work in order to make adaptations. I will be able to afford rent, so I won’t need housing benefit. The job is in London, so I will be able to travel on accessible buses without needing an Access to Work travel package, or a Motability funded car. Although I am a full-time wheelchair user, I do not have communication problems and don’t need a carer, so I don’t need Access to Work-funded communication equipment, Carer’s Allowance, or an Independent Living Fund to pay for 24 hour care.

That’s lucky, because all of the benefits listed above have either already been cut, or are set to be capped or cut in the near future.

During the Welfare Reform of the past five years, disabled people have been hit nine times harder than the non-disabled. Over the next five, it is once again going to be those most in need of help who are the hardest hit. If you and your family are able to work, lucky you. That doesn’t give you the privilege to criticise or judge those who can’t.

On Taking a Break (not literally)

I didn’t manage one blog post a week. I didn’t even manage one a month. Turns out, my mental health had to get a whole lot worse before it started getting better. In the hour between the last day of February and the first day of March, I swallowed the entire, extensive contents of my medical box, wrote a note to friends and family, and lay down to die.

Skipping the gory details, six days later, I am sitting in my eating disorder therapist’s office, still unable to think clearly, see straight, smell anything except a strange, lingering chemical stench, stand upright, make decisions or form complete sentences. Poison has reduced my body to a senseless shell. ‘On the plus side,’ says my wonderful, ever-optimistic therapist, ‘we know this is rock bottom. The only way is up.’

One of the difficulties of living with a chronic illness is knowing when to give yourself a break. Where an able-bodied person might take a couple of weeks off after breaking a leg, when you’re breaking bones at a rate of five or six a year, taking time off for each one is simply unfeasible. Like many people with a physical disability, sometimes the only way to cope is to take a ‘mind over matter’ approach: as long as my mind is working okay, my body can drag itself along behind, regardless of whatever state it might have got itself into. Which is fine, until it’s your mind that has broken.

During the three years of my undergraduate degree, I broke sixteen bones, and only missed one essay (I handed in a plan instead.) That wasn’t bravado, but necessity; had I taken a week off for each break, I would have missed 15-30 essays, and an equal number of supervisions. Two weeks before the deadline for my second piece of MPhil coursework, still unable to process information or read text without crying, I requested a deadline extension. A fortnight’s extension was generously granted, no questions asked, but I was left feeling bereft. My ability to ‘power through’ physical difficulties is something on which I pride myself; accepting that my mind simply couldn’t keep up felt like admitting defeat.

Why, when and how mental illness rears its ugly head is still, for the most part, a mystery. I know that my family history makes me more susceptible to mental illness, and that chronic pain is often linked to depression. Going through my ‘life timeline’ as part of CBT (cognitive behavioural therapy), my therapist has identified a number of events as ‘major’ or ‘traumatic’, and continually asks how I ‘dealt’ with them. Perhaps if I’d spent a little longer ‘dealing’ with things, I wouldn’t be in the mess I’m in now. Then again, perhaps if I’d spent a little longer dwelling on the things I don’t like to think about, I’d have gone loopy a long time ago.

I’m still learning to find the right balance between giving myself enough time ‘off’ to stay well and making sure I’m not just being lazy. The good news is things are, as predicted, on the up. I completed and passed my coursework. I had the time of my life abseiling, zip-wiring, clay-pigeon shooting and learning archery at the Brittle Bone Society’s ‘VOICE’ youth event at the Calvert Trust in Kielder. Since January, I have gained over 10% of my body weight, and am four kilos away from reaching a ‘healthy weight’. I spoke to an audience of over a hundred people at the Cambridge Rare Disease Network launch event. I recently took up wheelchair racing, which is proving hugely beneficial for both mind and body. This is the first time I have ever participated in disabled sport, ergo this is the first sport I have ever been kind of good at. Training sessions are hilarious, hard work and incredibly empowering, and have instantly become the highlight of my week.

My family and friends are still getting over the events of February and March. My mum still answers the phone with a panicked ‘are you alright?!’ constantly anticipating the worst. This was my third major suicide attempt, and each one has cost me friendships. The people I love the most in the world are the people I have hurt the most, and it’s a hurt I can never make up for. But here I am still going, still reading, writing and thinking, still plugging away at this poor neglected blog. I got better. I always do.

New Year, New Me?

Number three on my extensive list of New Year’s Resolutions was, in bold, no-nonsense letters, ‘Write blog WEEKLY. No excuses.’ My two-term stint of writing for the Cambridge Tab over, (you can find my Tab columns by googling ‘Cripple in Cambridge’), returning to my neglected blog seemed a good way both to maintain my writing and to cure the narcissistic desire to tell as many people as possible all my little thinks.

I’m good at making resolutions. Whether it’s a boldly scrawled New Year’s list, a neatly scripted Sylvia Plath-style page of ambitions for a new academic year, a drunkenly tapped out iPhone ‘note’ of more productive uses of time than yet another Sunday night Life, or simply a Monday morning post-it note, I have a real talent for planning personal makeovers.

This is the third week of 2015, and these are my first words. As it happened, the dawn of the New Year came slap bang in the middle of a fairly severe episode of mental illness. Thus far in 2015, most of my energy has been devoted to getting out of bed.

The fact is, when your physical and/or mental health isn’t quite up to scratch, resolutions aren’t all that helpful. It’s all very well resolving to dedicate summer 2012 to a regular programme of physiotherapy, but come September’s broken ankle, you’re back to square one. It’s all very well promising to be happier, but sometimes that’s just not something over which we have control.

The number of people in the OI community whom I know also to suffer from mental illness is high. Whilst I’m no psychiatrist, the connection between a body which, however hard you try to fix it, will break around you without warning, and a mind which sometimes gets worn out, doesn’t seem so hard to draw. Sometimes, no matter how rigorously we do our exercises, or how religiously we take our pills, our bodies and minds can let us down.

This year, for the first time in a while, I did not resolve to ‘get fit and healthy’. I resolved to work towards my own picture of health, whatever that might look like. If there’s a cast and a couple of grey days in there, that’s ok. And if, a year on, I still feel a long way off, that’s ok too.

And, whether my next blog is in a week or a month, I resolve to make it a whole lot less soppy 😛

Happy New Year xxx