Dominic Lawson: My daughter, the language of disability and the need to avoid dangerous euphemisms

I cannot see why I could be offended at the description of my daughter as mentally handicapped

I have upset Lord Rix. In a letter to this newspaper, published on Tuesday, he wrote: "Although I know him to be a stout defender of people with a learning disability, I was rather surprised to see that your new columnist, Dominic Lawson, chose to describe them as 'mentally handicapped'."

He went on to say that I "should know that most people with a learning disability now look on the term 'mentally handicapped' with horror and disdain. Even the largest and most influential charity, Mencap, has dropped the offending word from its title. Six years ago, we became the Royal Mencap Society and the acronym, Mencap, is now derived from the title of the Mental Capacity Act, which assumes that all people have capacity unless proved otherwise".

Lord Rix concluded that it was time for people with "a learning disability" to be consulted on this matter of linguistics, and "perhaps one or two might care to join in this correspondence". Well, this offer has been immediately taken up, though perhaps not in the way Lord Rix expected. In yesterday's letters page, Dr Maurice Brook wrote: "Unfortunately his invitation can have no meaning for my 52-year-old son. He is severely mentally handicapped, with a mental age of about three years. Like many thousands of others, he has no understanding of terminology and has no speech or reading ability... With the wider adoption of the euphemism 'learning disability', my wife and I, in common with many other parents, have noticed a decline in recognition of the special needs of those people with the more severe and profound mental handicaps.

"This seems to be because officials and service providers too readily allow organised groups of able and articulate people with disabilities (albeit susceptible to manipulation) the authority to speak also for such as my son and his peers."

In many ways, I am deeply reluctant to criticise Brian Rix. After 30 years of making people very happy by letting them see him take his trousers down on stage, Brian has devoted the past 25 years of his life to Mencap, for which he received that most unusual thing, a well-deserved peerage. What we have in common is being the father of a child with Down's Syndrome, and although Brian's daughter Shelley died last year at the age of 53, he recently became the grandfather of a little boy, Robbie, who also has Down's Syndrome.

Now Brian Rix clearly feels that it would be an affront to describe his daughter, or his grandson, as mentally handicapped. Yet I just cannot see why, any more than I could be offended at someone describing my own daughter as mentally handicapped. The description is neither inaccurate, nor does it imply any moral fault or lack of common humanity. Nor, so far as I am aware, has the term ever been used as an insult.

Brian Rix is, of course, not alone in his sensitivity. But I sometimes feel that those who have such feelings are betraying their own suppressed horror about their child's condition, and subconsciously hope that if it is described euphemistically then the handicap will be in some ways alleviated, or might even disappear altogether. But wishing won't make it so.

This self-delusion is particularly apparent in the practice, rather more common in America than it is here, of cosmetic surgery on children with Down's Syndrome, to remove the tell-tale facial signs of the condition. It seems to me that this is a form of rejection, aside from being extremely painful for the child. And in fact it is greatly to the benefit of people with Down's Syndrome (and their parents) that they do "look different". When a child with Down's Syndrome starts behaving extremely badly in a supermarket, people can immediately see why, and tend not to think ill of the child or its parents. How much worse it is in the case of autism, when the onlookers have no obvious way of knowing that this is not just a case of a very badly brought-up child.

In America, as a matter of fact, the term "mental retardation" - regarded with horror by social workers in this country - is still in common usage, and the Association of Retarded Citizens is one of the most respected pressure groups in the field. And if you look at the World Health Organisation's statistics on "learning disabilities", it contains a footnote which explains that this category "does not include conditions attributable to mental retardation".

What both America and the World Health Organisation seem to understand is that it is extremely dangerous if all people with mental disabilities, from the mildest to the most profound, are lumped under the same fashionable catch-all phrase, such as "having learning difficulties". We all have learning difficulties. I, for example, could never get my head around quantum mechanics, no matter how much I tried. Similarly, to say that Mencap stands for "Mental Capacity" implies that we should all be beneficiaries of the charity.

That, of course, would be Mencap's problem. But it is our collective problem that the same predicament has increasingly polluted our national social services. The extraordinary growth in those identified -- first by themselves and then by their GPs - as having "disabilities" has had the effect , as Dr Brook points out in his letter, of reducing the limited funds available to those with the severest problems; and if, in its current attempt to clamp down on this, the Government manages to make certain that more money is targeted at the truly helpless, then anyone with an ounce of compassion for the physically and mentally handicapped should support it.

The man whom I respect most in this argument is Ben Sacks, formerly the Professor of Developmental Psychiatry at Charing Cross and Westminster Medical School. Professor Sacks has dedicated his entire professional life to the mentally handicapped, and, now in retirement, devotes himself to charitable work in the field. Yesterday I read out to him aloud Dr Brook's letter and he said that it made him feel "both bitter and happy: bitter that it still needs saying, happy that it is being said".

Ben described to me what he called "this game of linguistic leapfrog" in which more and more innocuous terms are used to describe medical conditions, until all meaning is lost, and that "with the increasingly meaningless official descriptions it becomes all but politically impossible for the psychiatrist to treat the patient appropriately".

Ben Sacks believes that "with each change in terminology relatively more public money has gone to those who least need it, those one might describe as the articulate disabled, and less and less goes to the people we used to be allowed to call severely mentally handicapped, those with an IQ of below 50, who need 24-hour care".

Professor Sacks concluded his observations to me with this plea: "We must be allowed to describe the profoundly handicapped as profoundly handicapped: otherwise we are not just denying the truth. We are denying their suffering." And as I am sure that old theatrical impresario Brian Rix would agree, this would not just be a farce - it would be a tragedy.