We have a friend, let’s call her Betty, who is fit but cannot use her legs so she lives her life in a wheelchair. Many people treat her in a “does she take sugar?” fashion. She can answer for herself, she has a PhD, but she has to put up with being treated as an idiot.
Controlling a wheelchair
Wheelchair life is different. You have to learn new skills and the most important is how to transfer from chair to bed, toilet or another chair. Then how to handle and maintain a wheelchair. We often joke that Daleks can never take over the world because they cannot climb stairs, the same with wheelchairs.
Curbs and thresholds at doors can be managed by doing a “wheelie” but that is quite an advanced skill and takes practice. You need to have good upper body strength and you have to re-learn how to balance. Wheelchair users have to learn early on how to get up into the chair after a fall.
Wheelchair design
The NHS provides wheelchairs but the service is shameful. You have to be recommended by a doctor, then you wait for an appointment for assessment. Then, oh dear, we have run out of funds for this year. You can have one of the big heavy clunky bog-standard chairs or wait several months for a suitable one.
If you wanted a bespoke bicycle, a bike shop could get one within 2 weeks. The NHS wheelchairs use the same technology but they are hampered by their own internal controls.
“Ah, it’s public money we are spending.”
“It’s a very specialist service; we have to be very careful.”
“It takes years of training.”
All these are excuses for not providing a quick service.
Betty became exasperated and bought her own chair. They cost about £3000 and are made of titanium. They are beautifully light and compact, the wheels come off and on again with a click. Detachable lateral supports are essential for paraplegics. Most important, Betty can lift the chair into her car after her.
Sailing and other activities
In spite of the chair, Betty likes to do the things we able-bodied do. I took her gliding and she really enjoyed being lifted in and out of the glider by six burly medical students who happened to be there. I suspect the flight itself was rather to be endured than enjoyed. So much of flying depends on the feeling from “the seat of your pants” and paraplegics do not have that feeling.
We went sailing on the Solent with Sailability at Lymington. Getting in and out of the little trimaran was less than elegant but the sailing was great.
At a park, Betty asked me stand by as she tried get over a steep hump-backed bridge unaided. As she struggled a passer-by said to me, “If you were a gentleman you would push her.” He himself did not offer to push. Betty managed the task and now knows that she can visit the place on her own.
Betty likes to take advantage of the chair when she can. On one occasion she asked to be left at the top of a hill to freewheel down at speed. We followed and, turning the last corner, saw just one wheel sticking up from a ditch and still rotating. Betty was in the ditch, battered and bruised but brave enough to carry on.
What about sex?
Once I organised a talk by a titled lady who had been paraplegic since her teens, not Betty. She was to speak to a group of medical students about life with disability. In the discussion afterwards one student plucked up the courage to ask the question the others all wanted answered. “What about sex?”
“I am not going to go into any details.” She said. “You have to be much more adventurous, inventive and imaginative than any of you have been so far. Yes, we both enjoy it.”
Government trips up
The government tries to make places accessible for the disabled. The partially sighted have blister pavements to indicate road crossing places and corduroy surfaces to indicated hazards. All very good for the blind but they make things uncomfortable for wheelchair users. Their small caster wheels snag in the channels and the roughness shakes the fragile spine.
Cambers are a problem also. The chair veers towards the gutter and it is difficult to steer a straight course.
How to help
If you see a disabled person struggling, ask what you can do to help. Mostly the disabled can manage but sometimes appreciate help holding shopping, lifting something or steadying a car door against the wind.
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Great post, Mike. One thing I don’t understand is why so many “beepers” have been removed from pedestrian crossings these days. Near Southampton Central Railway Station there are two sets of lights to get across the huge road there and they used to have “beepers” in so you could hear that the lights had changed. There has never been a problem with the lights so suspect these things have just been taken out. Why make life more difficult for people? The beepers weren’t just useful for the blind or partially sighted, but for training youngsters to use both ears and eyes when crossing the road. Here at Hiltingbury I use the beeper we still have to train our dog when to cross. I do have great sympathy over the pavement issue for wheelchair users. You’d think in the space and computer age it wouldn’t be beyond the wit of man to make a decent, level pavement. Sadly I’m wrong on that!
If people in charge have more empathy, on top of their management expertise, the job they do will improve.
Who designs our cycle lanes? How many cyclists are consulted?
Who uses the pavements? Do people who sign the paper walk on our pavements? Perhaps they don’t have to walk.
We need experts, yet we need more common sense. Whoever runs public projects need to talk to and care for the people who use the services. For example, have a tour of the street with a wheelchair user; shop at a supermarket blindfolded as a team-building exercise. This would help them feel for the marginalised people in our society.
Another problem with pavements is vehicles parked on them. Wheelchair users cannot breathe in to make themselves narrower, or turn sideways and sidle past.
And when getting a wheelchair, it is important that the “main pusher” goes along too, so the handles can be designed for their height.
I know Eastleigh Borough Council is trying hard to tackle verge parking, but bad parking is everywhere here, and people always try to justify themselves why they park on the verges (including grass verge parking). Just come round and I’ll show you.