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.
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’.
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.
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.
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.
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.
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.
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.
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.
(See also ‘Driving‘, ‘Benefits and concessions‘ and ‘Living in London‘)