What is life really like for disabled people? The Disability Diaries reveal all
On her way from St Albans to Nottingham, Shona Cobb nearly found herself stuck on a train on three separate occasions. Cobb had booked wheelchair ramp assistance for each required change – but not one staff member turned up to help her. Instead, at one stop, she had to rely on a friendly couple to help her; at another, the only way to prevent the train door closing with her still on board was to stick her foot in it.
It is a neat and infuriating irony that Cobb struggled to get to an interview about the discrimination facing disabled people because she was experiencing just this kind of “disabilism”.
The Guardian asked seven people to document their everyday experiences of disability throughout September – including Cobb, 19, who has the connective tissue disorder Marfan syndrome. Their diaries capture the reality of being disabled in Britain today: the slights, broken systems and misunderstandings that stop disabled people from living as should be their right.
Hassles with public transport are a common theme – such as the extra half-hour Nina Grant has to set aside to reach any destination, as she navigates the London tube network. “I’m lucky I live just one bus ride away from an accessible tube station,” writes Grant, 31, who has Ehlers-Danlos syndrome, another connective tissue disorder, and uses a power wheelchair.
Then there are the inquiries Sasha Saben Callaghan, who is visually impaired and has limited mobility, has to put up with from random strangers. When they ask: “How did that happen?”, she sometimes just makes something up. “Once I said: ‘I angered a magician.’ They weren’t expecting that.”
Pete Langman, 50, writes about the difficulties that come with negotiating the world when you have early onset Parkinson’s, which causes hand tremors and mobility problems – from bouncers at clubs asking if he’s drunk, to odd responses when internet dating. In a conversation with one potential date, who commented on the brevity of his texts, Langman explained: “I have Parkinson’s so phone texting is tough.” “U r joking right?” came the reply.
There’s the trickiness of negotiating the workplace. Luke Judge writes about a client who asks why he is clocking off at 4.30pm, the finishing time agreed by his doctor and employer. “He asked why I was leaving early. Cheeky! What could I say? I am epileptic and it’s a medical reason? A bit of an awkward conversation. I have had this with some colleagues, too, who jokingly call me a ‘part-timer’, which I laugh off. But most of them don’t know I’m epileptic, so I usually just say I have an appointment.”
The first day of a new job can be nerve-racking for anyone. “There’s always risk when moving jobs, but when you are disabled there’s another layer of risk: will I be subject to abuse or bullying because of my disability?” writes Sam Fowkes, who has cerebral palsy and has just been promoted as an NHS manager. “Will I be seen as inferior or troublesome because I’ll need adjustments? Will I even be considered fairly at the application stage if I disclose a disability?”
Over the course of the month, Craig Gilding’s insurance company calls him multiple times, “despite it being on their records that I am deaf. Luckily, I managed to answer and sort it. Another deaf friend has lost her no-claims bonus on her car insurance due to communication problems with insurers.” Gilding adds that he recently tried to change his address with the Department for Work and Pensions, but “they insisted I needed to call them (impossible) or post a letter” – which promptly got lost.
I meet with Cobb, Grant, Langman and Gilding at Nottingham Trent University to talk about their experiences of keeping the diaries. There are regular flashes of humour (while discussing the shocked stares of strangers who don’t expect wheelchair users ever to stand, Cobb and Grant exclaim sarcastically: “It’s a miracle!”) and shared frustrations: from similar battles with the social security system to discovering each had encountered prospective employers who, upon seeing their disability, turned them down for a job.
All four agree that the process of keeping a diary led to a spark of recognition: for the first time in their lives, they were consciously noting the inequality they regularly face. “Doing this made me realise how bad things are,” says Cobb. “It’s like everyday, normal: ‘I can’t get in there.’”
The picture the diaries paint reflect a well-documented landscape of prejudice and discrimination: this year, a major study by the Equality and Human Rights Commission found disabled people in the UK are “left behind in society”, with a lack of equal opportunities in education and employment, and barriers to access to transport, health services and housing. This came at the same time as a UN report that condemned the UK government for failing to uphold disabled people’s rights across a range of areas, including education and work.
One of the defining issues that runs through the disability diaries is access. Grant writes about shops she can’t get into because of large steps or raised doorframes, as well as battles with transport and even fellow passengers. When a mother with a buggy moved off the bus to leave room for Grant’s wheelchair (saying she was “the next stop anyway”), she found herself “facing an accusing set of faces who had just seen what looked like a young person with their own motorised vehicle force a mother and her child off the bus”. She adds: “It’s hard to describe the feeling of being scrutinised by multiple strangers at once.”
The diaries show how this carelessness (or outright hostility) from members of the public can combine with inaccessible infrastructure to make even simple tasks a headache: from luggage being piled up around a wheelchair on a train, to cramped shops with non-disabled shoppers not looking where they’re going. During one trip to the shops on a busy Saturday, Cobb writes that she got “hit in the shoulders by a lot of handbags”.
The difficulty of access can even mean missing out on a social life. “Every social invitation tends to require calling or emailing the venue to find out about accessibility,” Grant writes, “and then usually having to explain to the host why I can’t come.”
The last major government audit in 2014 (the largest ever of its kind) described access for disabled people on Britain’s high streets as “shocking”. Surveying more than 30,000 shops and restaurants, it found a fifth of shops have no wheelchair access, only 15% of restaurants and shops have hearing loops and three-quarters of restaurants don’t cater for people with visual impairments.
Commenting on a shopping trip in London, Cobb writes: “In River Island, I was shocked to find they don’t have a disabled changing room – I thought all places had to have them!” And when a new Topshop was built near her house recently, she found it had a flight of stairs but no lift. Cobb tells me she asked an assistant whether they would consider putting one in, but was told it would “inconvenience” other people. “It was: ‘We care more about our able-bodied customers than you.’”
It’s often the same with transport: bus drivers routinely refuse to let wheelchair users on board, despite their legal obligation to do so, while only about a quarter of London’s underground stations are accessible for wheelchairs. Grant routinely has to use a neighbouring tube station because her nearest one isn’t accessible – forcing her to take a 15-minute bus ride to the tube before “going back on herself”.
In one diary entry, Cobb chronicles a train journey from Leeds to Hull. It is the first time she has ever taken the train at night by herself: “My assistance didn’t turn up so everyone rushed on the train and filled the wheelchair spaces while I hunted down the guard for the train,” she writes. No one would move for her, so she ended up squeezing into a corner near the toilet for an hour: “It wasn’t exactly a safe way for me to travel, but I had no choice.”
For Fowkes, overcrowding on our rail networks presents him with a painful predicament on his daily commute in the West Midlands. Because his cerebral palsy is largely “invisible” (“unless you were looking, you wouldn’t know I was disabled”), he worries about asking commuters for a seat. “I’d have to try to explain my disability in front of a lot of people on the train, which would be massively uncomfortable – even forgetting the times I’ve been verbally and physically abused in the past,” he writes.
Fowkes’s disability can leave him with insomnia due to the pain. After one particularly bad night’s sleep, and another commute with no seat to work or back, he notes that by the end of the day “it feels like my left leg has been hit with a sledgehammer”. Wider adoption of badges like Transport for London’s Please Offer Me a Seat would help, he says.
Travelling around the country is little better for people with non-mobility-related disabilities. Gilding uses public transport frequently, but describes it as “a nightmare” for those like him with hearing problems. “If you have to speak to someone on train stations, say, you have these big help buttons – ring if you need assistance … I can’t hear a thing.”
Throughout his diary, Gilding, like Fowkes, notes how simple adaptations would make his commute accessible: “I’ve asked time and time again for departure boards, to no avail,” he writes.
The failure to address these problems speaks to a persistent, deeply embedded cultural attitude around disability: that disabled people aren’t quite like “normal people”. The belief that a wheelchair user doesn’t want a social life, say, makes it easier not to worry about ensuring transport networks are accessible. As Grant writes after yet another frustrating day, the most basic needs of disabled people are neglected “in a manner that wouldn’t happen if they were needed by everyone”.
In the same way, disabled people still routinely encounter negative reactions from other members of the public – ranging from being patronised to outright hostility – simply for going out.
Langman, from Brighton, says he frequently faces derogatory comments about the way he walks because of his Parkinson’s, and writes of “the stares, the laughter after I pass” from strangers. Some even imitate his walk.
But as much as the abuse, it’s the benevolent prejudice – well-meaning but ultimately damaging – that affects him. Langman plays cricket for a local team and says opponents often don’t know how to respond to his condition, either overcompensating or suggesting a positive outlook would help. “Someone asked me what the prognosis of Parkinson’s was. I said: ‘It’s progressive.’ He said: ‘Well, it will be if that’s your attitude.’ I nearly punched him.”
Cobb, who posts videos online filmed from her wheelchair, points out that this intrusive outlook means disabled people often encounter a strange phenomenon on the street: members of the public routinely asking, “Why are you like that?”, as if they feel disabled people “owe” them an explanation about their medical background.
At best, this can lead to a bizarre crossing of boundaries, akin to asking a complete stranger about their sexual history (Gilding says he can be in the supermarket, and a fellow shopper will point to his cochlear implant and ask him: “What’s that on your head?”). At its worst, it can create the uneasy feeling that those around you are monitoring your disability and behaviour, waiting for you to slip up.
For the first year Cobb had her powerchair, she was afraid to move her legs in case people saw it as a sign she was “faking”. At a time when media depictions of disabled people are predominantly negative and reports of disability hate crime are increasing, Cobb says she repeatedly noticed strangers staring at her legs: “In the end, I wouldn’t even cross my legs.” This fear affected her to such a degree that, for years, she didn’t apply for disability benefits because she internalised the idea that she wasn’t “disabled enough” to “deserve it”.
Both Grant and Langman have lost their disability benefits in the past three years (Grant got hers back on appeal), while Cobb – who has a cyst at the bottom of her spine that means she needs a reclining wheelchair to relieve the pain – tells me she has been turned down twice by NHS wheelchair services. Like an increasing number of disabled people, she has had to start crowdfunding to raise the £11,500 she needs for her new chair. “I’m halfway there,” she says.
In the meantime, without a suitable wheelchair and with limited pain medication, Cobb is living with a “two-hour limit” for being out the house: after a couple of hours being interviewed, she has to go back to her hotel to lie down.
The UK’s lack of accessible housing is another key problem. Cobb lives with her parents in a two-storey house, and can only access her own bedroom by “going up and down the stairs on my bum”. Similarly, Grant is living in inaccessible housing with her family in London, and for the past year has been searching fruitlessly for an accessible property: “Private landlords don’t want you making adaptations [that I need to live independently], and the council doesn’t have accessible housing stock,” she says. “I have literally no idea where I’m going to go.”
As we talk, Grant reveals that she did not mention the house search in her diary, because she is so disheartened that even looking on the Rightmove website is making her anxious.
The introduction of equality legislation over the past 20 years (giving disabled people the right to access work, transport and public venues), coupled with high-profile events such as London’s 2012 Paralympics, may have created the impression that Britain is moving forwards in its treatment of disabled people, but day-to-day life is still riddled with barriers.
Grant sums it up: “I think we like to think [as a country] we’re making progress. But in reality, we still get turned away from buses. We still have nowhere to live.”
Some of the solutions to this inequality require large-scale change, often involving government policy – from requiring a certain proportion of new-build houses to be wheelchair accessible, to stricter enforcement of equality legislation on pubs and shops that aren’t meeting their legal access requirements.
But what the diaries underline is that seemingly minor measures can be just as important: shop owners ensuring access buttons for automatic doors are actually working, for example; more dropped kerbs on pavements; shop staff ensuring non-disabled people aren’t using the accessible changing room.
As well as practical changes, a further cultural shift is required: both Grant and Gilding say having greater visibility of disabled people in the media and politics would go some way to normalising disability in society. All the diarists stress one thing above all else: that the able-bodied public needs to understand that disabled people still face inequality in Britain every day.
As Langman tweets to the rest of the diarists on his way home from the interview: “If one thing improves as a result of this, we’re winning.”