The lasting effects of a temporary disability


By Margo Milne

Imagine you were born perfectly fit and able-bodied. As a teenager, you suddenly became severely physically disabled, but then you became able-bodied again. How would that affect your attitudes to disability and disabled people once you were an adult?

When writer and broadcaster Hardeep Singh Kohli was 13, he came down with Guillain–Barré syndrome, a usually temporary condition that causes sudden paralysis, often triggered by infection. He was in hospital for 10 weeks, and it took him a year to learn to walk again.

Lucy Pask, who runs the website Great Aunt, also had Guillain–Barré syndrome, in her case at 14. After 2 weeks in a wheelchair, she recovered sufficiently to walk with a frame, and was back at school within 12 weeks.

Hardeep didn’t see himself as disabled and wasn’t aware of any discrimination. Lucy felt that, if anything, discrimination operated in her favour. She got lots of attention, long extensions on coursework deadlines, and was offered money by charities. People who had previously bullied her now protected her: “It seemed like in their minds; it was fine to bully me whilst I was ‘able bodied’ but whilst I was ‘disabled’ I was totally out of bounds, a person to be protected.”

Both Hardeep and Lucy experienced ‘invisible symptoms,’ such as fatigue and balance problems, after they had apparently recovered. Lucy found these particularly troubling: “Because I no longer had a wheelchair or sticks, teachers and other adults who didn’t know what was causing this and just assumed I was being stupid, lazy or maybe even drunk?”

Charlotte spent 3 years from the age of 15 using a wheelchair and learning to walk again after several major surgeries to increase her leg length as a result of hypochondroplasia, a genetic disorder where the bones of the limbs don’t grow as they should. She didn’t notice any discrimination, but did feel conspicuous in her wheelchair with metalwork sticking out of her legs. The pain caused by the procedures made all sorts of ‘normal’ activities very difficult.

So how did these experiences affect their later attitudes to disabled people?

“I think my empathy with those regarded as disabled is better” says Hardeep. “I try very hard to see the person and not the wheelchair. I try. I’m sure I fail at times. I think I learnt that there are apparent and hidden disabilities.”

Similarly, “It made me acutely aware of the everyday problems and difficulties,” comments Charlotte. “I get furious whenever I see someone with a visible disability clearly struggling to do something and being ignored or looked down on. I hate the way most people talk to people in wheelchairs… I think I mostly resent others assuming that disabled people cannot/shouldn’t make their own decisions.”

Lucy agrees: “The biggest thing that I’ve learnt from being paralysed and learning to walk again is to calibrate against personality not ability… I seek to understand the person.”

None of these 3 individuals were aware of negative discrimination during their period of disability, but all were left with a legacy of altered attitudes towards disabled people.

So what about people who weren’t disabled in their youth, who’ve been able-bodied throughout? How can they form positive attitudes towards disabled people?

With increasing visibility of disabled people in the media, in politics and sport, able-bodied children and adolescents are now learning that disabled people are ‘normal’ people like themselves. We can hope for a future where disabled people are accepted as part of the mainstream population.

This article first appeared in Disability Horizons, dedicated to creating a positive, interesting and useful disability related magazine with articles and resources to help disabled people achieve whatever they wish.

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