Tag Archives: disability

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

The 9th 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.

Abbi boards a train in her manual wheelchair, using a grey ramp with yellow edges. The ramp has been put down by a train guard wearing a blue jack, who waves her on as she boards, watched by another guard with pink hair. Both guards wear face masks.
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it took my secondary school six attempts to find me a work experience placement (the first five offers having all been withdrawn on the grounds of ‘health and safety’).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.

Abbi, a blonde white woman in a black manual wheelchair, sits on a train platform at the bottom of a flight of stairs pointing upwards. At the top of the stairs is a lift shaft.

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 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?

Leicester-Sq

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.