Nina Grant, 31
Nina lives in London. She has Ehlers-Danlos syndromes and is a wheelchair user.
I went to join some friends in King’s Cross for coffee. The tube station I have to use isn’t actually my nearest station but my nearest accessible one. This means first taking a bus (assuming I can access the bus at all), then going back on myself once on the tube, passing through my actual nearest station five minutes later. It takes me on average half an hour longer to reach a destination than it would someone who isn’t a wheelchair user – and that’s assuming the station lift isn’t broken. Only “around a quarter” (according to Transport for London) of London underground stations are wheelchair accessible.
My partner surprised me yesterday with a book I’d pointed out earlier in the week in the window of a charity shop. A lovely gesture, but he wouldn’t have had to buy the book for me at all if the shop did not have a large step into its entrance, which blocks wheelchair users from entering. This seems to be a frequent problem in my local area with independent shops and businesses. When a new coffee shop opened in town I asked them if they had a ramp – and if not, would they consider getting one? The answer was no, but I would be welcome to enjoy my coffee in the enclosed yard at the front. In November. (Not to mention next to a busy road, with no access to a toilet).
I find it galling that businesses don’t consider that wheelchair users might want to use their services, or consider our patronage worth less than the cost of a cheap folding ramp. Existing accessible locations aren’t guaranteed to stay that way either; when my local pharmacy moved to a bigger location, the salon that took over the old shop put in a raised door frame. Instant inaccessibility. The scarcity of access also makes social occasions a bit of a minefield. Every invitation tends to require calling or emailing the venue to find out about accessibility, then usually having to explain to the host why I can’t come.
Today a woman with a buggy moved off the bus for me (“I’m the next stop anyway”) so I could board in my powerchair. When I had settled into position, I found myself 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. It’s hard to describe the feeling of being scrutinised by multiple strangers at once, but I can hazard a guess as to what they were thinking: “She’s too young to be in that contraption”; “… sense of entitlement …”; “I just saw her leg move! She’s obviously faking!” As a wheelchair user, I feel like bus journeys are often a lesson in learning to ignore others’ facial expressions. Everyone else gets to sit in rows, seeing only the backs of their fellow passengers’ heads. But wheelchair users, who sit facing backwards, have to studiously avoid the stares, glares and outright gawps (and the occasional comments about “good parking”).
I was reading the news that the Lib Dem peer Sal Brinton had been refused access to a bus by a driver, due to a buggy in the wheelchair space. Most comments were supportive, some predictably not. One commenter stated that “[wheelchair users] are so used to priority access” that “it must have been a shock to hear the word ‘no’”. There speaks someone who has never been a wheelchair user, and has a huge chip on their shoulder about the perceived perks that they themselves don’t get to enjoy. The “special treatment” is actually an attempt to make day-to-day life for disabled people that little bit fairer. I suspect that those who moan about it haven’t thought about what it’s like to sit at a bus stop for an hour while bus after bus goes by, near-empty but with the wheelchair space taken by a foldable buggy, or to be unable to go shopping because standing for 10 minutes is too painful. It’s slow progress, but infrastructure is slowly changing to accommodate the various needs of disabled people. I’m still waiting for the attitude of the wider population to catch up.
Today I noticed that the automatic door button at my local bank branch was not working, just as it hadn’t been some months before. I had to time my entrance and exit so other customers could hold the door. This got me thinking about how the wider population views things like that access button, needed by disabled people to manage independently and with dignity. Most of these objects or services are frequently neglected, derided or misappropriated in a manner that wouldn’t happen if they were needed by everyone.
I remember the saga of the Whole Foods pre-peeled oranges. Someone posted the picture online and soon Whole Foods were accused of contributing to pollution, while internet commenters mocked anyone who would need a pre-peeled orange in a plastic tub as “lazy”. No one stopped to think that many disabled people find preparing fruit and vegetables difficult. Whole Foods bowed to pressure and the product was discontinued. I feel a twinge of environmental shame when I buy pre-chopped vegetables in microwavable plastic packets, but the alternative is having a less healthy diet.
Sasha Saben Callaghan
Sasha lives in Edinburgh and has a visual impairment as well as very limited mobility.
The last day of the Edinburgh Fringe. I usually stay away from central Edinburgh during August as it’s too much of a scrum, but I agreed to go to a show with my eldest son Alex and a friend. My son phoned in advance to check the access – hooray, the venue was one I could get into. Except it wasn’t, of course. I arrived to find my son waiting outside: “You’ll never make it, Mum, it’s up three flights of stairs.” Great. Why was I pissed off more than usual? Because during the first week of the Fringe, I’d participated in one of the shows, along with two other disabled friends. We’d gone more than the extra mile to ensure the venue was accessible: there was a signer, subtitles and so on. We made the effort but it still feels as if a lot of non-disabled performers don’t bother.
This is why I don’t travel on buses unless I can help it. I had to go to Craigmillar today. When the bus arrived, it stopped well away from the kerb so I had to negotiate my walking frame into the road. OK, that wasn’t going to kill me. However, the driver just sat staring ahead when I asked him to lower the step. Eventually he turned around and said: “Oh, that’s not working.” Another 20 minutes to wait until the next bus.
I got a taxi home.
Today I had two people asking about my impairment, both random strangers. I think I’m one of those people who strangers talk to anyway, which is generally fine. But it seems that being “in-your-face” noticeably disabled gives some non-disabled people licence to ask all sorts of intrusive questions: “How long have you been like that?” “What happened?” “Have you tried XYZ?” Oh please. I wonder if they walk up to strangers who don’t look disabled and start asking them about the benefits of avoiding whole grains. The woman who gave me this helpful advice today probably thought she was being kind. My mouth said “thanks” but my brain said, “Oh, just bugger off”. Note to random strangers: when you ask “how did that happen?” you should not expect a truthful answer. I get asked a lot and sometimes I just make stuff up. It’s less boring. Once I said “I angered a magician”. They weren’t expecting that.
The park is right next to my house so I take my dogs there. Today a guy I’ve never met before went out of his way to stop me and said: “I wish I was you. I’d sit on that (my walking frame has a seat) and get those dogs to pull me along. It would be like racing huskies in the Arctic hahaha …” Yeah. OK.
First day I’ve been out since getting food poisoning. It took me ages to get ready and then the taxi was late. When it arrived I asked the driver for the ramp. As per usual he went into the “it’s against health and safety, ramps are just for wheelchair users” default position. Sometimes I argue, but today I felt too ill to fight so I just crawled into the cab.
Still ill but today I had to go out. The phone rang so I knew the taxi was outside. Fab. When I got on to the street there was a group of people rather aimlessly standing in the road next to a vast collection of luggage. There was also an empty taxi. OK. I lifted my walking frame up with bit of a struggle. To be fair, most taxi drivers help. The one who didn’t today was an exception. I hauled myself in. I don’t want to sound “poor me” but I am in a lot of pain most of the time and getting in and out of all kinds of transport is a challenge. But I made it, yes!
Then one of the guys who’d been standing with the luggage came up to the open cab door and just stared at me. “Is there a problem, was this your cab?” I said. “Yes, it’s my cab,” he replied. I apologised and got out again with gritted teeth and a lot of effort. He then laughed and said: “No, you’re alright. It’s not really my cab.” So I had to pull myself back in again. Which was apparently very funny.
Shona Cobb, 20
Shona lives in Hertfordshire. She has Marfan syndrome and is a wheelchair user.
I was in a coffee shop in Hull city centre, and there was a button with a wheelchair symbol on it on the wall next to the door. This would usually open the door, a handy addition to heavy doors. I pressed it and nothing happened. Several more attempts and neither the door nor any of the staff inside had moved. Luckily a passerby kindly helped me in. When I flagged the broken button to a staff member, they said that it was only supposed to set off an alarm – but evidently the alarm was also broken. Couldn’t a big coffee chain afford to put in a door system that works?
Arrived for an NHS appointment in an old converted building, with steep steps to enter. But I know they have a ramp. One problem: the buzzer to let them know I’ve arrived and need the ramp is at the top of the stairs. I rang them and they brought the ramp out, but it was so steep I needed a push. My powerchair can usually handle steep inclines but this was too much; I’m slightly dreading having to use it again.
On my way home I really struggled to find dropped kerbs to cross the road, as the building for my appointment was down a few side roads. Often councils don’t bother to put in dropped kerbs on every street. I had to bump painfully down a kerb, risking damaging my powerchair, and then travel along the road until I could find a dropped kerb further down.
Went to get the bus to the train station and the first bus that arrived had two buggies on board. The driver didn’t ask them to move, he simply said “we’re full”. On the second bus the driver asked some buggy owners to move or fold up, which they quite happily did. It was a great relief, as otherwise I would have missed my train. On the train, as usual people tried to put their suitcases around me in the wheelchair space, blocking me in so that I wouldn’t be able to move for a two-and-half-hour journey. I never let anyone do this, no matter how annoyed they get. I have as much right as anyone else to move from my “seat” during the journey.
Today I went shopping in town on the one day I usually avoid, a Saturday. It was extremely busy, hardly anyone paying attention, so I had to concentrate a lot harder to predict everyone’s movements; I can’t just side-step out of their way. I also got hit in the shoulders by a lot of handbags, some pretty heavy.
Had to wait for a group of teenage girls using the disabled changing room in a clothes shop today. Perhaps one of them has an invisible disability, but this happens so often and it’s really frustrating. I often find that groups use the disabled space so they can try clothes on together, and I can understand why – but it is literally the only place I can try things on. In one big chain I was shocked to find that they don’t have a disabled changing room: I thought all places had to have them!
On the train from Leeds to Hull, it’s about 8:30pm. First time I’m getting the train this late on my own and the train is packed. My assistance didn’t turn up so everyone rushed on the train and filled the wheelchair spaces whilst I hunted down the guard for the train (lucky that the train even had one), who brought the ramp for me. There were buggies and people in the wheelchair space, none of whom showed any signs of wanting to move for me when I turned up and said I needed the space. They simply pointed to a small gap near the toilet, where I ended up squeezing into a corner for an hour’s journey. It wasn’t exactly a safe way for me to travel but I had no choice.
Pete Langman, 50
Pete lives in Brighton and has Parkinson’s disease.
I’m out for dinner and as we approach the restaurant I see a look in the doorman’s eye. “Are you alright, sir?” What he means, of course, is: “Are you drunk or on drugs, sir?” I say: “No, I have Parkinson’s” and that’s an end to the matter. It’s totally understandable, because I do walk badly and I don’t appear to be disabled. But explaining oneself can still be exasperating. Inevitably, it casts a shadow over the evening.
The usual round of sideways glances, up-and-down examinations and mild impatience. At times when I feel I may be inconveniencing others – in the supermarket check-out, at the self-service ticket machine – my stress level increases, which decreases my functionality and thus proves a self-fulfilling prophecy.
Internet dating: a minefield for the disabled, no matter how mildly or how invisibly. Today’s exchange:
Her: How r u doing ?
Me: I’m grand, if as busy as a flea …
Her: I see, a writer of few words …
Me: I have Parkinson’s so phone texting is tough
Her: U r joking right ?
Me: Why on earth would I joke about something like that?
The walk. The youths. The stares. The laughter after I pass.
Today was my final day’s cricket for the season. I keep wicket, and our opening bowlers are a little too sharp for me to be entirely comfortable. It’s five overs before I take a ball cleanly behind the stumps. My Parkinson’s makes my left hand very unresponsive and my lateral speed of movement rather lacking. There is also almost a conspiracy of silence surrounding my performance. Eventually one of our players chips in with a “don’t feel bad about that, Pete” when I make a particularly egregious error. He’s taking the piss, but he knows me so feels confident that it’ll be taken in the right spirit. He’s right, but it hurts. It hurts because it was my error, but it also pleases me because he ignored the Parkinson’s. It’s a sort of cognitive dissonance.
Once, after a game, I was selling my book in the pub and the opposition captain said to a customer: “He’ll even sign it for you if he can stop his hand from shaking long enough.” We’ve played a lot of cricket together. He turned to me, mildly horrified by what he’d just said. “I can say that, right?” he asked. I was laughing too hard to answer.
I lunch with a fellow “Parky”, one a few years older in both real age and “Parky” age and suffering more from the debilitating effects of this disease. And today is a bad day for him. The way we are treated by the bar staff is exemplary. So often people get “helping out” wrong. The situation can be a nightmare: when, how, to what degree to help? Will they think I’m fussing, patronising, insensitive, uncaring? It all depends. Sometimes I want to be asked, sometimes left to my own devices. Sometimes I just want help without question. As often as not, I don’t even know myself. For me, it’s best if people do what they think best, without doing something that obviously infantilises. But if I complain, reject the help or in any other way appear unappreciative, just smile and apologise gently. You never know what tumultuous seas are crashing within.
I’m preparing for a trip to the US. When I arrive, following several hours in a metal tube dehydrating, my gait will suffer quite badly. So I travel with a stick. What a difference a stick makes. The young couple on the train wave me ahead of them. The barista offers to bring my coffee to my table. People can’t do enough. My walk remains the same but now it’s validated, made official by the addition of the stick. Without it, I am drunk, drugged, deemed unworthy. With it I’m an unfortunate.
Luke Judge, 27
Luke lives in London and has epilepsy.
I start my workday from 10.30am, at least an hour after most of my colleagues, and finish at 4.30pm. This is at the request of my GP and neurologist to reduce stress. An intense period at work earlier this year led to dozens of seizures in just a few weeks. A client calls asking for some reports; I said I couldn’t provide them before leaving. He asked why I was leaving early! Cheeky! What could I say? I’m epileptic and it’s a medical reason? A bit of an awkward conversation. Some colleagues jokingly call me a “part-timer”, which I laugh off. But most of them don’t know I’m epileptic; I usually just say I have an appointment.
Hearing auras have returned a little today. The feeling is like you are under water and people are talking above you; you are unable to understand anything they are saying. Very difficult to work around people when this happens.
Writing this on my phone in the A&E ward at a hospital. On the way to work this morning I was feeling lightheaded. When I got to my desk I was struggling to hear anything, the auras from yesterday were more intense. As my manager spoke to me I felt myself losing consciousness. It feels like slowly losing your breath, with creeping darkness as my eyes closed. My body feels like when you start to drop from the top of a rollercoaster. After that nothing.
I woke up 20 minutes later with the first aider standing over me. He asked my name, age – just checking I was recovering. Then I realised this had happened in the middle of my office, so I kept my head down in embarrassment. I wanted to disappear. The paramedics came shortly after; I was checked over and my blood and vitals were all OK, but the paramedics insisted on taking me to A&E. I’m supposed to be away on a family weekend tonight and was ready to take the train after work down to Brighton. My family had rented a beach house and I’m probably going to miss it all.
Got home from hospital last night alone and feeling pretty down, thinking of my family at the beach house. My dad was going to stay with me but I begged him to leave me alone. When home the auras started again, but I stayed relaxed and calm. At one point an aura got very intense and I lost control of my body. I felt my mouth dripping and was ready to fall unconscious, but somehow I regained control and the moment passed. This morning I woke up positive, drained of energy but determined to get to Brighton and forget the last two days.
Back home after the beach-house weekend which was brilliant. Great food, fun and great people. Now it’s hitting me how bad I feel after the seizure at work on Friday; it had never happened to me before at work and now all of my colleagues have seen it.
Craig Gilding, 28
Craig lives in Lincolnshire and is deaf.
My friend received a compliance interview letter from the Department for Work and Pensions (DWP). She was told she could ring up to query it using a normal landline number. She is also deaf. The text phone number provided was an 0845 number, which obviously costs more to call than a normal telephone number. They wouldn’t speak to me via email.
In general, it’s very hard to get the DWP to do anything via letters or email. I tried to change my address with them recently but they insisted I needed to ring up (impossible) or post a letter, which I did. Over a week later, I asked them to confirm receipt and they denied receiving anything (the norm), so I had to tell them I was updating by email whether they liked it or not, and they did it. So that was a waste of time and money.
The DWP is one of the biggest organisations in the UK and is setting a terrible example. If they can get away with it as part of the government, then what on earth are we supposed to do as deaf adults? It never used to be like this, so I’d put it down to short staffing.
Travelled on the train to my work’s headquarters and a lot of stations seem to have “help points”. These are absolutely useless to someone hard of hearing or deaf. My local station doesn’t even have departure boards; it’s all done via a speaker. I’ve asked time and time again for departure boards, to no avail.
Insurance company rang me 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.
Tried to pay my car tax online using my bank card. A message appeared explaining that my bank protects my card against “unauthorised use online at no cost” and that the transaction couldn’t be completed. “We will attempt to contact you within five minutes to confirm if this transaction is genuine. However, if we have not contacted you within this time, please contact us on this number …” It’s on record that I’m deaf, so how do they expect me to call them? Eventually they did get in touch via text, but what would I do if they didn’t?
Went to the council office with my friend, who is also deaf, to help her sign on for the employment and support allowance (ESA). She was told she has to do it online. Checking online, only phone numbers are provided for completing the process. Returned back to council office and was informed she would have to make an appointment with Citizens Advice to get it sorted. More evidence the benefits system is not fully accessible as it should be. After a bit of arguing, she was given a massive form to fill in and return.
Sam Fowkes, 25
Sam lives in the West Midlands and has cerebral palsy, but can walk unaided.
I start a new job today at an NHS Trust. I’ve already been at the Trust for nearly a year while on the NHS Graduate scheme, and I’m relieved to be staying at a place where I’ve had a positive experience regarding my disability. But the whole process of applying for a new job was extra stressful, because it felt like a lottery as to how accommodating any potential employer would be.
Of course there’s always risk when moving jobs, but when you’re disabled there’s another layer of risk: will I be subject to abuse or bullying? Will I be accommodated to do my job to the best of my ability while not harming my health? Will I be seen as inferior or troublesome? Will I even be considered fairly at the application stage?
This felt particularly acute applying for jobs in NHS operational management, where there seems to be a culture of people priding themselves on long hours and the intensity of their work. If people doubt how realistic those concerns are, I don’t think they realise how common abuse and belittlement for being disabled is. At school, I was told by a teacher that I should have been in a special school because I wore a supportive device on my leg. It’s hard, after such abuse, to not worry about what people’s attitudes toward your disability are going to be.
My first day in the new job and, predictably, I can’t get a seat on the train. I do a 30-minute train journey to and from work every day at rush hour. It’s a local train service with no seat reservations. With cerebral palsy affecting the left side of my body, standing up for even 30 minutes in a moving carriage is exhausting. By the time I get in to work, my leg is sore and weak, my back is tight and cramping, and my neck feels like it’s on fire. I take a strong painkiller. I’ve been taking them every day for 10 years but they still affect my energy levels, which means I’m tired from the moment I start my work day.
I slept terribly last night. Poor sleep due to pain is very common for me. One or two nights a week, my sleep is significantly disrupted by pain. I was massively hoping there would be a seat on the train, but again I need to stand. Given I’m already low on energy from my poor sleep and knowing that the painkillers will tire me out even more, I skip them and get a large coffee instead. Making a trade-off between pain and alertness would be a necessity for me anyway, but the lack of seating on public transport just makes everything more acute.
I can’t get a seat on the train back either. By this point, it feels like my left leg has been hit with a sledgehammer. I get home, take some painkillers and fall asleep on the sofa almost immediately. I wake up about 9pm, have a bag of crisps for “dinner”, and go to bed without showering or doing any housework.
No seat on the train into or back from work. I pay £80 a month, and in return got a seat about five times this month, three of those being when I travelled outside of rush hour times. I feel like I’m being ripped off. People might wonder why I don’t just ask for a seat, but the problem is my disability is pretty invisible. I’m mildly affected as far as cerebral palsy goes, so unless you were looking you wouldn’t know I was disabled. 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.
I don’t know how well it ended up working, but I do remember seeing that Transport for London created some “less able to stand” stickers for tube travellers a while back, which looked like a great idea. I also think I shouldn’t have to rely on the kindness of strangers for me to have a commute that doesn’t negatively impact the rest of my day. More importantly, there’s surely a wider responsibility for accessibility that goes beyond “can you get on here with a wheelchair?”
- These are edited extracts of our seven diarists’ entries. If you have experiences relating to this article that you’d like to share, please email us firstname.lastname@example.org
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