IN 1975, I picked up a magazine in the waiting room of an intellectual disability centre where we had gone to have our little daughter assessed. There were the usual pictures of open days, outings, accounts of great leaps forward. But the article I remember was the story of a boy from a remote area who entered the agency’s residential school at four years of age, unable to speak or play properly. After a few years of care and stimulation at the school, he was pronounced ‘normal’ and left. His apparent intellectual disability was the result of a deprived home background.
The writer did acknowledge that his was an unusual case, but I can still remember the paralysing mixture of fear and hope that I felt. I had thought of myself as a ‘good’ parent; but had I, somehow, been doing the ‘wrong’ thing for the last three years? Was there a chance that these professionals had some secret magic that would unlock my daughter’s powers? By the time we reached the psychologist’s parlour, I was almost a suitable case for treatment.
This story illustrates the problems that can grow up in the relationship between parent and professional. Both have somewhat unrealistic fears and expectations. Professionals—particularly medical professionals—are socialised into the values of optimism, progress and action. Parents, on the other hand, often feel slightly guilty about having to ask for help. Even when they ‘know’ that their child’s handicap is not their fault, there is often a residual guilt. At first their need to do something—anything—for their child can make it difficult for them to evaluate what the professionals offer. If their assessment of the child seems like cloud-cuckoo land, it may be that they don’t really know her.
Parents do have a great deal more clout than they like to think, but it is always difficult for them to insist on their point of view if it conflicts with the advice of people who have jargon, statistics and videos on their side. This is particularly obvious where parents are poor. But even when they are as educated as those on the other side of the desk, parents are still hampered by the great fear that their son or daughter could lose his/her place. Most agencies feel that this fear is quite unfounded; some are upset that it should even be voiced; but it crops up over and over again among parents, particularly when they mention things they would like changed. Where there is a chronic shortage of places, the unspoken bottom line is always: hold on to your place, you’re lucky to have it. Unlike the ‘normal’ world, you will not be able to move your child to the school in the next parish. The only way to switch services is to move house!
I’ve always had a good relationship with the staff who have looked after my daughter over the years; I admire their devotion and enthusiasm. Yet a phrase in an article by Chris Conliffe recently leapt off the page at me: ‘the worlds of parents and professionals seldom overlap’. Parents take over when the professionals go off duty, and where the person with the handicap doesn’t talk much, the two worlds may remain a mystery to each other. I sometimes think the problem is one of language. If I take my daughter to the shops, that’s how I express it; if the staff do it, they call it an exercise in community integration. Perhaps a bit of normalisation here would not go amiss!
While I admire most of the professionals for their optimism in the face of slow or no progress, the down-side of that optimism can be a brushing-aside of all difficulties in the name of positive thinking. Parents are in disability for the long haul, they are there when problems surface after-hours and they cannot move on to a new area if a project doesn’t live up to the hype. This makes them cautious about change. There can be an unconsciously patronising attitude to parents by professionals wishing to get new schemes off the ground. ‘Oh, the parents will have to be educated’, they reply airily, to any objections. Now, while we parents do have our neurotic and blinkered moments, so too, I might venture to suggest, has the odd professional. Among adults, any education worth having is a two-way affair.
I think if I was back in that assessment waiting room today, I would take out my felt pen and write: ‘This magazine displays an anti-parent bias.’ Perhaps I’ve just got older and more assertive, but I know now from my own experience that there are as many children rescued by their parents’ unswerving devotion in the face of professional disbelief, as there are cases like that little boy’s. And most children with a disability need parents on one side and professionals on the other, if they are to make any sort of fist out of our world.
(First published in Issue 9 of Frontline, Spring 1991)