Life-changing injuries
Accessing places and public transport
After leaving hospital and rehabilitation, people could have difficulties getting around as they adapted to their injuries. Because of their problems, fears and issues with accessibility, they could be initially daunted by the prospect of leaving their homes. Going out could be affected by the physical environment; inaccessible buildings, sloped, steep paving and steps. People also experienced tiredness, weakness, and mobility and balance problems. Sometimes they feared crowds, experienced anxiety or sensory overload, or worried that their fatigue may cause them to fall asleep on public transport and miss their stop. In some cases, how people felt on the day affected whether or not they felt up to going out.
Nick Z says the weather can affect going out in his wheelchair.
Nick Z says the weather can affect going out in his wheelchair.
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So to start with I had to be pushed and then there’s quite a steep from the house up to the park. So again it took me three or four months to be able to get myself to the top of the road. But then there’s quite a good park at the end of the road. So I try to push myself round there. So I do about an hour at a time. And I’m in the process of getting a, a weight machine, an exercise machine, which will allow me to exercise all the muscles that I do have control of and that work, from my wheelchair, with the limited hand function that I’ve got without needing any help. So I hope to take delivery of that in the next few weeks and then I will be able to exercise whatever the weather’s like, because obviously going out to the park when it’s cold or wet is not a very good idea.
Why is it not a good idea?
Well cold. I didn’t mention but another aspect of a spinal cord injury is you lose control over your body temperature. So your body temperature tends to adapt to whatever the ambient temperature is. So going outside you have to make sure that you are very well insulated if you do go. And when it’s wet, you tend to lose 75% of the grip on the rims of your wheelchair, so it’s exceedingly difficult to push, especially uphill or, more importantly, coming downhill if you have no control because you have no grip that can be quite dangerous. So I haven’t had any problems so far, but I haven’t been out in the wet too much.
Rob thinks London is a beautiful city, but its winding streets make it difficult for him to...
Rob thinks London is a beautiful city, but its winding streets make it difficult for him to...
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Is there anything about living in London that you think has made things a bit more difficult?
I mean, London itself is a massively old city, so the, the pavements and stuff like, it can be...It’s so weavy and windy and the streets coming through at every angle. I mean like it’s not like Barcelona, where it’s on like a grid square system, like every block is like just squares and squares, everything’s right angles and that so…. I mean it’s a little bit, it’s a little bit tough at that but there’s nothing that can really be done about that. Its, I’d hate it; I’d hate London to be a grid square city. It’s such a beautiful city. So beautiful the way it twists and turns, but it just makes things a little bit more difficult.
To get around, people walked, drove and used public transport, including buses, the tube, taxis and trains. Initially they were often helped by occupational therapists and physiotherapists, or accompanied by support workers. But Jack thought rehabilitation professionals can’t prepare you for every situation. He said, “They give you the basic skills and then you go and practice it on your own”. There was some variation in how accessible transport services were for people. Some places, buildings, tube stations and toilets were difficult or impossible to access.
Public places and transport are made more accessible through ramps and spaces for wheelchair users on buses, audio signals, spinning cones and tactile paving at crossings for blind or visually impaired people. ‘Radar keys’ make some toilets available only to disabled people, although disabled toilets are not always completely accessible. Of course many disabled people don’t need to use disabled toilets. Dave doesn’t have to because he has a fitted suprapubic (indwelling) catheter and uses a bag. Despite these attempts at improving accessibility, people still encountered problems. Simon B said he’d used accessible transport and “it’s still hard work”.
Simon B joked that disabled toilets are “miracle factories” because people go in disabled and...
Simon B joked that disabled toilets are “miracle factories” because people go in disabled and...
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Okay. Tell me about disabled toilets?
Yeah, they tend to be massive, the size of a football stadium sometimes. And often used by people that don’t need them. Hit and miss, some are great, often not enough, sometimes in strange places. I have no real, no real whinge, about disabled toilets other than when people come out of them walking, which I often refer to as it being the miracle factory because they’ve gone in disabled and they’ve come out walking. So no, no real whinges, there, there tends to be enough of them. They have them on trains, on you know, Virgin Pendolinos, they’re right by where you sit, so they’re accessible. They’re better than they used to be. They don’t stink of wee like they used to in the old days. The Radar key scheme’s great. That works pretty well at keeping people out. It’s a special key from the Royal Association of Disability. I forget their title, but a Radar key, most disabled people have a Radar key about £2. They’re a special key, they open certain you know, toilets in pubs and whatever, and it tends to keep the masses out.
So the disabled toilets are permanently locked ….
Some are. Not all are. Some have a special Radar key and you’ll see that there are certain locks. And I’ve had a Radar key since, you know, I was first injured, pretty much. I found out about the Radar key and it allows you to access, you know, certain toilets.
John said, “Trying to get on a bus with wheelchairs is atrocious in London”. Because of limited hand function and reduced physical strength, people with spinal cord injury could find ramps onto buses too steep to use on their own, so needed assistance. Older buses have manual ramps and on the newer ones they’re automatic but these don’t always work. All buses have spaces for wheelchairs and prams and wheelchair users should have priority. Often this was not the case. People said parents were reluctant to move their prams and sometimes drivers would not insist on it. This could be very frustrating.
In Brian’s experience the buses are good, but sometimes mothers don’t want to move their child’s...
In Brian’s experience the buses are good, but sometimes mothers don’t want to move their child’s...
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And tell me about using the bus?
Well the buses now, they’re pretty good. The 311’s pretty good now. Some of the old buses is still in service, but they’re going to be phased out anyway I think. No. Good though.
Some people who I have interviewed have told me that when they tried to get on the bus, it’s very busy and sometimes you know?
Yes, get told you can’t on, because mummy’s got the baby in the, not even the bloody baby, you know what I mean? The kid is sitting in the pram, you know, like a little buggy and he could easily stand up. All the mums have become so lazy now that they don’t want to transfer the children from the buggy and so I mean you have to wait for the next bus. And then when the next bus comes along you hope you can get on that one. Now that’s very contentious issue that is.
What do you think should happen?
Well I think that if there’s a space on the bus that is supposed to be for wheelchair users or buggies, then they should be able to compromise by either the person who’s got the buggy folding the pram up and holding the baby, so that the person in the wheelchair can use the wheelchair space.
And whose responsibility is it? Do you think it’s the mother’s or the driver’s?
It’s the driver’s now. It’s the driver’s now.
And you find that they just don’t do that?
Well sometimes, some don’t. But most of them they comply.
Transport accessibility on the tube is limited for some because few stations are step-free and there is often only standing room on trains. The platform can be higher than the train and there can also be gap between the two, which makes it difficult for people with mobility problems to use unaided. Transport for London (TfL) provides a ‘Travel Mentoring Service’ which supports disabled people travelling around London. While TfL staff can be helpful, they are not always available. Rob hasn’t used the tube yet since he lost his sight. He is worried by the prospect of travelling on it alone. Joe said that some stations were more accessible than others depending on the layout, and design, of the stairs. One person found the East West tube lines easier to navigate than the North South lines.
At the time of interview, people with mobility issues had to notify staff around 24 hours in advance if they wanted assistance to travel on overland trains. This made spontaneous travel very difficult. Transport for London now operates a ‘turn up and go service’ and pre-booking is no longer required. People who still wish to pre-book assistance may do so, but are advised to give 24 hours’ notice. Wheelchair users got on the train by means of a ramp, which they said not all staff are trained to use. Some people described negative experiences on trains because they need assistance to get on and off.
Simon B hates using the trains because he feels like a “piece of luggage” being loaded on.
Simon B hates using the trains because he feels like a “piece of luggage” being loaded on.
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You know, on trains, why are trains three foot above the platform, therefore, you need a ramp? Why aren’t they lower to the platform and you don’t need a ramp? You know, I hate trains. I’m like a piece of luggage when I’m loaded onto a train. You know, why aren’t they just low? Or why aren’t the platforms higher? Or why is there not a button on the side of a train that the ramp comes out on its own? Why do you have to wait for some bloke to turn up with a ramp, who often doesn’t turn up? As I’ve found to my costs. I know other people swear by trains and say they’re fantastic and use them every day to go to work. I have had the worst experiences. You know, so that inconsistency doesn’t exactly instil confidence. You know, if one person finds them fine, they probably use them all the time and have no problem, but for me, you know, I’ve had, you know, stuck on trains going down the line, where I’m not meant to be and then trying to get back down the line. It’s just horror stories.
Wheelchair users also discussed the difficulties they experienced flying where again they had to pre-notify the airline in advance. Getting on and off the plane, fitting in the allocated space and going to the toilet during the flight were problematic. Wheelchair users may be asked to board the plane either first or last and board via a lift attached to the side of the plane. People are often expected to use the airline wheelchair, which could be uncomfortable. Airline staff provide assistance for disabled people, but there was concern that airlines may stop people flying alone, despite them having done it before several times.
Because he has a comfortable, expensive, custom-built wheelchair, Simon B doesn’t like using...
Because he has a comfortable, expensive, custom-built wheelchair, Simon B doesn’t like using...
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Staff asking you at check in to get out of your chair at check in, and then suddenly be in some rubbish chair for the rest of the airport. Forget that. That’s not happening. Chairs being sent to the carousel with the rest of your luggage and going round on a carousel. My chair to replace is £4,000, so I don’t want to it going round on a carousel. And I’ve held up flights because they’ve sent my chair to the carousel, and they have a tag on the chair that says bring to cabin door, which means you need your chair at the cabin door, not on the carousel. So I blocked up a flight from Zurich five or six years ago, with BA, who at the time had a bad reputation, which recently it’s got a lot better. And I held up the flight for 45 minutes while they went and got it. It was my rare moment of militancy that I just threw all the toys out the pram and said no, go and get my chair. That’s why it cost £4000 and I need it, it’s fitted to me; it’s bespoke. It has a pressure cushion and it has all the toys and trinkets that you need out of a chair, and that’s what’s been paid for and that’s why I need it at the door. So you’d best go and get it. I don’t think I made a lot of friends that day. But I got the chair.
Okay. When they ask you to get out of your chair at check in and they, they want you to use one of their airport chairs. …
There’s only one answer to that, that’s no.
And why is that?
Because I’m not sitting on their chairs. What do I have my own chair for? The golden rule of flying is 45 minutes before the plane takes off to be at the gate. It gives them sufficient time to load you first in privacy, with sufficient time to allow everyone else to board and the plane get away on time. If you do it all like that it’s fine. If the guys turn up 45 minutes in advance, which they most of the time do, you’ll get on, you’ll be lifted and handled and moved and all your luggage carried on in privacy, first, always first on, last off. Fine. I’ve got no problem with that. It would be great if they could make it successful. In 15 years of flying post injury, I’ve only once stayed in my chair, onto the plane in my chair, transferred myself out of my chair into the seat and that was on an upgrade on a Virgin flight, and it was great, it was wonderful, I could stay in my chair. I could transfer out of my chair, like I do to the car these days, but that’s a lot of flights between then and now. And I fly three, four times a year, quite regularly.
So I know people that don’t fly that are chair users because they’re fed up with the experience. I tend to just want to do the things I want to do and have to bite the bullet in between and put that on the experience. Sometimes it’s absolutely fine, sometimes it’s horrific.
Does the staff have to transfer you into the seat on the plane?
The ground crew, the moving and handling crew, yes. Often they’ll send two small women, which is not a good idea for a six foot five bloke of fifteen stone. And that’s not sexism, that’s just pure practicalities. And often the crew on the flight will be just, if not more helpful at doing some of that then the people that are turning up to do it, and I’m sorry to say, it’s better overseas often, then it is here.
As a wheelchair user, Sam has found it extremely difficult to use the toilets on planes. He...
As a wheelchair user, Sam has found it extremely difficult to use the toilets on planes. He...
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Planes are an interesting one.
Why is that?
Well because it’s a fuckfest isn’t it? You can’t get down the aisle. It’s like that big. So that they put you on this little aisle chair. It’s like sitting on a dildo. It’s just so, it’s so thin, and you always… Every time you go, just prepare yourself for something going wrong. Because something will always go wrong.
If you’re going to a non-big airport then they have to get an ambilift which is like a thing like that on, so it jacks up to the side of the plane and you get on and then will come down and it will take you off. And oh they’ll be like arm rests which don’t go up and you’re trying to transfer over and there’s hundreds of people and your legs are spasming. Or they don’t let you on the plane first or… all kinds of stuff. I mean yeah, it’s a pain in the arse.
And then the biggest pain in the arse is you’re going to need to piss. So there are three options for that. One, is ask them to use the aisle chair to take you to the loo, which you won’t be able to fit into. And piss in not very much privacy in the middle of the plane. Two, is to put in an indwelling catheter and you know, drink away freely if you’ve got an indwelling catheter in there if you’re going on holiday. And if you put it in wrong you could end up with a bad infection. You could hurt yourself and you’re going to be away when that happens. Or just like me, you just have quite an aversion to those things. And then the other option which is the option I tend to do is I just put a blanket over my head and take out a catheter and just piss as I would, and that’s yeah, [slight mobile interference] I mean is better if you know the person in the seat next to you for that one. But that’s what I do. You have to be a bit shameless [interference ends] I think is the word for that. Is there another option? Oh yeah, then a final option which is a terrible option, which I obviously do on short haul flights, which is just dehydrate the fuck out of yourself and then you won’t need to piss, but that’s not being, not very healthy.
So yes, planes are a pain.
To increase accessibility, people relied on others for help and reassurance. Carers helped transport people around. Drivers helped wheelchair users onto buses. People were able to book support staff to assist them at Tube stations, although in Bryan’s experience they did not always turn up. He also felt patronised by being offered too much help by some support staff. Sam relied on his friends to carry him into places that were not accessible. People chose to travel outside of the rush hour, and planned their routes carefully. They had mental maps of the places they could go completely alone and used the TFL website to plan their journeys. Adrian was pleased that he was still able to use the tube and buses because his long term memory was good, and it was cheap to use. People also made others aware of their impairment by wearing shorts to reveal their prosthetic leg or by carrying a walking stick, although often they did not like doing this.
Sam thinks you have to see life after injury as a challenge and be comfortable with letting other...
Sam thinks you have to see life after injury as a challenge and be comfortable with letting other...
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I mean this Friday I was at a party. I had to go up and down stairs. And it was different mates carrying up, like about six times and there were like a thousand people there and you know, you think is going to be a real pain, and you shouldn’t do it...And you should, you know, you’ve got to you’ve got to not let it stop you doing things otherwise you’re going to resent it even more. So, so you know, and like with everything you have to see the challenge in that and enjoy it, and relish the challenge you know. You know, you have to think that what your, that you are fundamentally different to everybody else now and you can see that two ways. You can see it as like, you know, everything’s fucked and I’m, I’m kind of outcast. Or you can see it as like I’ve got my own story now, which you know, I’m going to try and do it as heroically as I can, and take pride in doing it like that, and be strong. And being strong makes you feel stronger and makes you better able to deal with things and you know, that’s, that’s really important. And, you know, it’s also useful to have other people, well you know, other people in your situation you can talk to.
Well if you don’t trust your friends you’ve got nothing. My friends aren’t going to drop me. I’ve only been dropped like once, and we were up like six flights of stairs and we were like drunk and there was like we went through the door, and we ended up on top of each other, you know, I mean you’re not a baby. It’s not like you’re going to crack your skull. You know, you have to come to terms with that. It’s a bit like being the centre of attention. Other people can’t go on the stairs and you know, it’s a bit kind of like you feel like a spectacle, to start with, but you just, you just laugh and you know, that’s all you can do really. You’ve either going to not go to wherever one is, or not be able to go with anyone, or stop other people doing things they want to do, or you can try and, you know, people are making, doing stuff to accommodate you. And you need to sort of try as much as you can to meet them half way as well.
And there will be places that you want to go, that you know, you can’t do without that bit of help, and you, what you’ll do is you’ll find a few of your friends who tend to be with you, and just over time, you’re just training them to do things for you, you’ll want them to do and they’ll know and also it’s a nice thing for them, they’ll take pride in being able to help you, and knowing how to do it. And they’ll build their biceps up as well if they are lifting me up and down everywhere. But yes, I mean that happens all the time for me.
Inappropriate and insufficient access angered some people and caused upset for their families. When Bill was unable to access a toilet in a pub, he became angry. When he reacts like this it upsets his children and his wife. Catherine said, “It ruins the day”. But Bill said, “When I am put out to that degree, why shouldn’t I get angry? Someone’s got to get angry. They’re not living my life, but I’m living it”. People also described feeling uncomfortable or humiliated being carried up stairs, or having to ‘bum shuffle’ because of inaccessible buildings or facilities. Some people talked about the frustration of not being able to control where they could go or travel spontaneously. People also said they made official complaints about access issues in buildings and on public transport. They felt that others may experience the same fear and apprehension, and that something should be done to improve disabled access to buildings and public transport.
Bill said that inaccessible buildings created problems for him that he wished his children did...
Bill said that inaccessible buildings created problems for him that he wished his children did...
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Bill: I’d just had a revision done of my stump and the bone that had been growing had been shaved away and all the muscles had been joined up properly and you know, they’d taken about two inches off of my first stump. And it was a lot better but it was still raw injury. And trying to get into a concert and to get into this place that was not disabled friendly in a Grade I listed building, but it wasn’t disabled friendly. I had to bum shuffle up the front steps from the pavement into the building and that bum shuffle caused the pressure in my blood to go up and my wound burst open unbeknown to me whilst sitting in the main hall. I just sat there and thought to myself this is feeling a bit wet as if you’d peed yourself, you know, it was that sort of … not that you’d know of course. Not that you know but you understand what I’m trying to say.
I can imagine.
Bill: You can try but… Anyway I put my hand down and it was just covered in blood. I went to Catherine like this. Catherine said, “What have you done.”
Catherine: “Now what have you done?”
Bill: “Now what have you done.” It was like, oh something else to cope with. Oh. And you know, it was no fault of mine the wound had burst open and I was bleeding so ….
Catherine: Infection. Back into hospital. He drove home first.
The importance of consulting disabled people when accessible facilities are being constructed, adapted or renovated was raised by some. But sometimes people accepted that the world was not completely accessible to them and that little could be done to change this. Elcena reflected on the improvements in accessibility over the years.
Sam said the tube has been around for such a long time that you can’t expect it to be made to...
Sam said the tube has been around for such a long time that you can’t expect it to be made to...
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I think I read somewhere that something like only 2% of the tube stations here in London are step free.
But they shouldn’t, that doesn’t matter. You know, you can’t expect everything to be made to suit you. The tube is a great facility. You know, I used it pretty much every day before my accident. You know, it’s a hundred years old, you know, it pre-dates catheters, pre-dates people who are paralysed even living, you can’t expect everything to work for you. What you do expect is the things that can work for you to work for you. And, you know, by and large people are pretty good.
The attitudes of some bus drivers, members of the public, and inaccessible buildings, toilets and Tube stations, indicate that change is still needed within London and wider society to improve accessibility for people who’ve had a life-changing injury. People felt that if they didn’t complain, or campaign for better access, nothing would be done to resolve the problems. John thought the improvements that were being made in advance of the Olympics and Paralympics would not last after the events had finished.
Simon B says there are groups trying to make London more accessible, but they are financially...
Simon B says there are groups trying to make London more accessible, but they are financially...
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And do you know if there is anything being done to change that? Does Transport for London know?
They’re they should know, but not much is done when people do complain. There are various organisations out there in London that are fighting to make transport more accessible. I don’t know how far they’ve got with that. I mean there’s no current timeline to make the whole tube network accessible. I think they just recently scaled back on making more tubes accessible. I think they’ve actually scaled that back by 30 or 40% on you know, previous plans to make certain tube stations accessible. You know, you have to understand that it’s an old network, so it’s not very easy to make tubes accessible, but it’s all about motivation and money and making these things happen. And they basically getting a big stick to hit people with to make it more accessible.
People wonder why people don’t leave their houses that are chair users.
They don’t leave their houses sometimes because it’s bloody hard to do so. So, the more easy you make it, and the more you make people part of society, and out there working, travelling, and spending money, and going to pubs, and just being a person that’s, who is trying to engage with everybody else. So you know, it is a problem.
(See also ‘Driving’, ‘Benefits and concessions’ and ‘Living in London’)
Last reviewed October 2015.
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