テつ*Features テつ*テつ* Publication Date: 09 December 2002A 'stubborn' woman who fights for others

By Gail Walker
Disability rights campaigner Monica Wilson has always been upfront about her own disability INTERVIEWING Monica Wilson is easy enough. And then again, it's not.

She's just back from a glittering ceremony in London where she was presented with a prestigious award for her work as a disability rights campaigner, joining a roll of honour that includes Professor Stephen Hawking and ex-Beatle Paul McCartney's wife, Heather Mills.

Since Monica, who uses a wheelchair, is chief executive of Disability Action and no stranger to the media.

You know you're going to be able to ask all those things about disability you've always wanted to know but wouldn't normally ask a disabled person, in case you both get embarrassed. Particularly you.

You know, like what's it really like not being able to walk? How do you feel being stared at all the time? Did it stop you getting married?

When she was a primary school teacher, kids would ask Monica questions like "Are your legs broken, missus?" and "Why are you in that chair?" and she loved their directness - and unquestioning, easy acceptance of her - so she's always made a point of being upfront about her disability.

Consequently, I found it pretty easy to work up to asking whether or not she was married. But that was also my downfall.

No, Monica replied slowly, she had never married. And then she made me feel really small and prejudiced.

Evidently correctly working out my next line of inquiry she continued: " How shall I put this? It had nothing to do with disability. I have had some opportunities but I have chosen not to take them

It wasn't a deliberate put-down. I think she was making it easy for me. Nevertheless, I felt stupid.

Monica, on the other hand, looked totally unfazed. "I don't mind ignorance," she told me later.

"Unless you're in the disabled loop you can't be expected to know things. It's those who know things but continue to under-value people that annoys me because that's prejudice."

Of course, through her work, she hears much worse than my crassness every day. Clients ring up her offices, upset by airline questionnaires.

"One question asks whether the disabled person could be offensive to other passengers, for example, do they smell?" she says.
"But there are no questions asking anyone whether they'd be offended by a person who has too much drink taken or by a passenger who doesn't wash."

Another lady, also in a wheelchair, was stopped in Marks & Spencer's by a shopper who demanded to know: "How do you have sex?"

Monica says: "The lady pointed to another woman across the way and said 'Would you ask her that question?' and the woman replied 'No, but she's not disabled.'"

Deaf people using sign language in pubs have been asked to leave because they 'look aggressive' and people with cerebral palsy have been turned away from restaurants because they would 'put other diners off their food.'

Doubtless Monica has been so effective in her campaigning role because of her pragmatism, common sense and determination.

Friends jokingly accuse her of being a control-freak, but she counters: "I'm not bossy, just stubborn. 'Stubborn' is a nice word."

She's a churchgoer but has never asked God why she is disabled. "I've never done that stuff," she says, looking horrified.

Very early on in our chat, she made it clear to me that she "wasn't keen on doing a lot of soul-searching, because I don't do that. I don't have peaks and troughs."

Nor was she fussed on talking much about her disability, probably because that would be to accentuate her 'difference', though I eventually prised some details.

She was paralysed from the neck down after contracting polio when four months old, during the last major epidemic of the disease in 1950.

Five others were rushed into hospital the same night she was diagnosed and her parents recalled travelling with her in the ambulance, then having to remain in the vehicle to be fumigated. "Sulphur was pumped in around them, then the whole family had to go into quarantine," she says.

The middle child in a family of one boy and four girls, she was brought up in Carrickfergus.

Though "not an angsty" person by nature, she also concedes her parents imbued her with a
'get-on-with-it' spirit.

"I had to do the dishes just like the others," she says. "My parents were not drivingly ambitious for us, but they wanted us to make the best of ourselves - and that included me."

Her father worked in the construction industry and her mother took a job as a dinner lady when Monica started school, so that she could help her daughter at lunch time.

Up until she was 18, Monica struggled to walk, aided by full-length callipers, crutches and a body brace, which she detested.

"I was metal from head to toe. I couldn't balance well and spent a lot of time on the floor. It was energy sapping. I decided to use a wheelchair and that was a lot easier," she says.

It was as a teenager that she became most acutely aware of being disabled.

She had passed her 11-plus and though the authorities wanted her to attend a special school, her mother insisted she stayed in mainstream education.

She went to Dominican College in Fortwilliam, Belfast. "I was given a taxi to school and my friends would travel in it, too. We thought it was great," she laughs.

But, if she was 'fitting in', was she also an outsider?

"All teenagers find something to focus on and for me the focus was fairly obvious," she says, evidently uncomfortable on the subject and trying to make it sound as if she is talking about someone else.

She continues, rather vaguely - "I think there was all that teenage stuff about wanting to be attractive and being aware of oneself as a sexual being" - before swiftly bringing the conversation back to practicalities:

"One hard thing for a person with a disability is always having to plan. There's not much spontaneity. You have to find out first if somewhere is accessible - and 30 years ago that was very often not the case."

Almost as an afterthought, she also throws in: "I also felt I had to do everything better, just to be equal."

Who did she talk to about her worries? "My parents. They said 'Well, that's an issue for you but your brother's worried about this and your sister about that?you just have to work through these things.' Which was probably the best approach."

At 17 she took up table tennis and went on to win Commonwealth, European and International medals.
She also attended St Mary's Training College, becoming the first disabled person to qualify as a teacher in Northern Ireland.

She taught for six years at St Colman's Primary School in Greenisland then, worried that she was getting too comfortable, moved to - she grimaces at the politically incorrect language - the Northern Ireland Committee for the Handicapped.

It's now known as Disability Action.

There, she has helped spearhead battles that have resulted in, for example, legislation that will mean by 2004 employers and service providers must make buildings fully accessible to disabled people.

They have also tackled less tangible - and therefore, says Monica, in many ways more difficult - issues, such as sexual health education for people with learning disabilities.

We chatted in her spacious upstairs office at Disability Action's premises in Belfast's Harbour Estate.

"I'm only one part of a great team. I want you to stress that," she says.

Her award from RADAR, the disability network, recognised her work as a 'veteran disability rights campaigner.'

One in five people in Northern Ireland has some form of disability and she remains passionate about eradicating discrimination - whether the disability is physical, mental or an illness like epilepsy or diabetes.

The only thing that irked her about the award was the word 'veteran', as it made her think about her age.

Now 52, she's moving from Belfast to an apartment in Carrickfergus and muses that "it will probably be my last house move."

Then, typically, she rallies: "But 'veteran'? That makes it sound as though I'm at the end?I don't think so. There's still a lot to be done."