From our own correspondents

From our own correspondents

Kill the messenger!

The birth of a handicapped child stigmatises its parents, who were quite `normal'previously. An abnormality that may seem trivial to them as adults (looking atsomeone else's child) may assume massive proportions for them as parents...1

Many years ago I examined a 1-year-old infant referred to The Babies Hospital in

New York City by a paediatrician who had been following the child with serial

examinations at monthly intervals since birth. When these first-time parents were

told by friends that neuromuscular development was progressing too slowly, their

doctor suggested they bring the child to the medical centre for an èxpert opinion'.

The gross manifestations of Down Syndrome were obvious at first glance, and the

other specific signs of the condition were readily confirmed on physical

examination. (This incident took place long before the chromosomal evidence of

trisomy 21 in this disorder was discovered by Lejeune in 1959.)

I was surprised to learn that this easily made diagnosis had never been mooted

by the family's paediatrician. Needless to say, the unsuspecting parents were

devastated by my news. But I was unprepared for their reaction: they turned on

me in anger! Until then, Down Syndrome was never even hinted at, the parents

said; and they accused me of labelling their child unfairly. They clung to the fact

that the referring paediatrician had always been non-committal. I silently

condemned the doctor's pose as cowardly, because it seemed so obvious that he

had been unwilling to be the bearer of sad news.

Sociologists understand that a biophysical disorder exists independently of

human knowledge and evaluation; but, they point out,2 illness as a social state is

`created and shaped by human knowledge'. Thus, when a doctor devises a label for

a human condition and classifies this entity as a specific ìllness', the diagnostic

act changes the behaviour of the newly designated `patient' and all those who

attend her. Ìt is in this sense', Freidson has written, `that the physician creates

illness just as the lawmaker creates crime...illness is a kind of social deviance

analytically and empirically distinct from mere disease.' In chronic disease and

disability a `stigma' is often affixed to the sufferer permanently.3 And it is this

societal reaction that `spoils the identity' of those affected. As a result, everyday

interaction with `normals' is in some sense always strained. Although there may

be no explicit reference to the handicap, Goffman notes, social exchanges are

often accompanied by `the familiar signs of discomfort and stickiness. [There are]

Paediatric and Perinatal Epidemiology 1999, 13, 3±8

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the guarded references, the common everyday words suddenly made taboo, the

fixed stare elsewhere, the artificial levity, the compulsive loquaciousness, [and]

the awkward solemnity.'

Sensky has observed that parents of a disabled child come to view themselves

in a distorted fashion. Ìf they accept responsibility for their child,' he noted, `they

have no choice but to be responsible for its stigma also.' Moreover, the stigma may

`spread' to involve all who associate with the disabled or chronically ill child. And

this diffusion of `shameful differentness' provides a reason why close connections

tend either to be avoided or quickly terminated. Professional attendants are also

vulnerable to the effects of stigma, Sensky found. Àlthough their responses

should serve as valuable role models for the parents, [the professionals] often fall

short of this', he charged...`they often collude with parents to avoid addressing

these problems altogether.'

The total number of disabled persons extant is, of course, enormous. For

example, the US Census Bureau reports4 that 48.9 million people, 18 per cent of all

Americans, have some kind of disability. And there has been a revolutionary

change in attitude of the disabled in recent years ± they now demand èqual rights'

in every aspect of public life. The self-confidence of some militants in this

movement is startling. It has been reported5 that `Many disabled say they would

reject a cure even if it were possible, explaining that they have a condition not an

illness...`Ì would not trade my disability [post-poliomyelitis] for anything,'' one

woman declared. Rather, she said, it is up to the world to adapt to her needs...' But

acquiescence and full social acceptance by the dominant, non-disabled majority

has been far from wholehearted.

`Ridding people of labels', Trent has written,6 ìs certainly better than declaring

them permanently disabled. But...neither approach is adequate.' For example, he

points out that `Without jobs and humane programs [even] the most open-minded

society offers its mentally retarded citizens little more than the illusion of equality'.

A recently disabled woman observed7 that `most of the [modern] images of

disability come from myth and the media...[the depictions] are stereotyped and

extreme: The pitiful victim at one end, the ``supercrip'' [like physicist Stephen

Hawking] at the other...[But] most people whose disabilities are as severe as

Hawking's, live in poverty; many are locked away in institutions ± out of sight,

out of mind...'

As I now recall the devastating message I delivered so bluntly to those

unprepared parents when I was young and inexperienced (above), how I wish I

had taken into account the poet's caution:8

Ì have spread my dreams under your feet,Tread softly because you tread on my dreams.'

WILLIAM A. SILVERMAN

Greenbrae, CA, USA

4 From our own correspondents

# 1999 Blackwell Science Ltd. Paediatric and Perinatal Epidemiology, 13, 3±8

Paper 153-155

References

1 Sensky T. Family stigma in congenital physical handicap. British Medical Journal 1982;285:1033±1035.2 Freidson E. Profession of Medicine. A Study of the Sociology of Applied Knowledge. NewYork: Dodd, Mead and Company, 1972.3 Goffman E. Stigma. Notes on the Management of Spoiled identity. New York: Simon andSchuster, 1963.4 Leader. Has the Americans with Disabilities Act gone too far, or not far enough? TheEconomist, 18 April 1998.5 Martin D. Eager to bite the hand that would feed them. New York Times, 1 June 1997.6 Trent JW Jr. Inventing the Feeble Mind: A History of Mental Retardation in the United States.Berkeley: University of California Press, 1994.7 Klein BS. Slow Dance. Toronto: Vintage Canada, 1997.8 Yeats WB. He wishes for the Cloths of Heaven. In: The Oxford Book of English VerseEditor: Quiller-Couch Sir A. Oxford: Oxford University Press, 1941.

Comment

I have no basic argument with the concept that chronic illness or impairment may

generate problems of stigmatisation for the parents and the child, although it

would appear that the stigmatisation phenomenon is considerably less than it has

been in the past. I also have no disagreement with the concept that illness is a

socially determined state. However, I believe that the degree to which such

problems generate antipathy toward the physician making an appropriate

diagnosis will depend to a large extent on the manner in which this information

is transmitted to the family. I am even more concerned about whether the use of

labels to identify disorders is useful or harmful to the family and the child.

For the last 15 years I have been primarily involved in the diagnosis and care of

children with chronic illness or disability, what is now called Children with

Special Needs, a euphemism established when C. Everett Koop was Surgeon

General of the United States and now in common use in this country. My activities

include a consultation service for these children, a diagnostic team for special

education, state-wide efforts to increase the use of early intervention services for

children under 3 years who have developmental delay, and evaluation of children

for disability who are applying for supplemental income on this basis.

Weekly I come into contact with professionals, and the families and their

children who fit Silverman's description but also with a large number who don't

fit that stereotype. One observation, among many, is that families who have a

child whom they know has something wrong but have bounced around the

system without anyone willing to decide that this is `X' or `Y' are desperate for a

label, even though the label won't change anything about the child's problem. I

find families who are pleased when we tell them that their child with a variety of

stable neurological deficits can be termed to have a `static encephalopathy', which

From our own correspondents 5


Paper 153-155

in lay terminology is called Cerebral Palsy; they are generally pleased that they

can label the problem even if it has an unpopular connotation.

As an example, I recently saw an adolescent who is very bright and in a gifted

programme but who has many behavioural problems that fit a variety of descriptors:

Pervasive Developmental Disorder, Oppositional Defiant Disorder, Obsessive

Compulsive Disorder and Attention Deficit Hyperactivity Disorder; and at one

time or another he has been given one or the other of these labels. The parents were

distraught, the school was perplexed and the boy was hostile. When I was able to

explain that there are a number of children with this array of behaviours and in 1996

a description of such children had been published and entitled Òbsessive Difficult

Temperament'1 and that the children often responded reasonably well to behaviour

modification, counselling and serotonin drugs, the parents were positively impres-

sed and thankful that someone seemed to know what was wrong with their child.

This was true, even though I spent much time explaining that the label didn't change

what was basically wrong and that the treatment would be appropriate even if we

didn't have a label. The school is likely to be equally happy that they have something

to which they can now affix their interventions. At this point that label doesn't carry

much stigma since it is so little known. I'm reasonably certain, however, that if one

doesn't already exist, there will soon be a parent support group for such families. On

the basis of many encounters of this type, I have the distinct impression that families

need a label as an anchor to windward for their concerns and anxieties.

Overall I am impressed that families are better able to cope with a child's

problems with a label than without one. Some labels are too quickly provided, as

for example ADHD, and this can be a disservice to the child and family when the

label is used to cover up our ignorance or unwillingness to seek appropriate

consultation. Nevertheless, I feel that parent support programmes and proper

orientation to a diagnosis with appropriate services being provided have gone a

long way to make children and their families much more comfortable with labels

than has been true in the past. Abuses still exist and are certainly deleterious, but

with appropriate support to the family and the child, these abuses should

become rarer. Taking the time to help the family understand fully the

implications of labelling a condition, should usually prevent opprobrium being

attached to the `messenger'.

The major problem that is still difficult, and in some ways getting worse, is the

lack of psychological help for children and their families in the face of any chronic

illness, disability or disease. In our situation, we are generally able to provide that

kind of support and it is striking how well the families can cope when they do

receive such services. Without it, family disruption, behaviour problems in the

siblings, and poor care for the affected child can all occur and usually do. Lack of

adequate mental health services is the real dragon in the woods, and I have no

idea how that is going to be fixed in our present system; managed care seems only

to have made the problem worse.



Paper 153-155

Reference

1 Garlan EJ, Weiss M. Case study: obsessive difficult temperament and its response toserotonergic medication. Journal of the American Academy of Child and Adolescent Psychiatry1996; 35; 916±920.

WILLIAM B. WEIL JR.

Michigan State University

So What?

An open letter to the editor

Over 10 years ago you invited me to write for your August Journal. Then I was

working with paediatricians so I knew a little about child health. You kindly allowed

me to continue to write for you when I moved to work in the field of arthritis and

when I moved yet again to run a charity concerned with those providing hospice

and palliative care for adults ± by which time I had forgotten anything I had ever

known about child health. And now I move again. Do you want me to continue or

should I recognise that my shelf life is at an end? Have I passed my `sell by' date?

Should I write my last So What, thus going before I am pushed?

I am about to retire. What an amazing thought. Just because I have reached the

age of 62, just because I want to spend a bit more time gazing adoringly at my new

grandson, just because after working for over 40 years I am tired of the daily fight

that London's public transport involves. Just for such trivia, I am giving up a good

salary and a job which involves such treats as being invited to dinner at the

Banqueting Hall and the Dorchester Hotel and breakfast at the Army and Navy

Club. Just for such trivia I am giving up the opportunity of three visits to

Edinburgh a year and the chance to go to conferences in Bergen, Brussels,

Birmingham and Bath.

If the main problem is who will I be after I retire from work, the problem of whatshall I do is less acute. Apart from staying a magistrate and hanging on to some

other committees I am on, the news of impending retirement does lead to

invitations to a wide range of voluntary activities. Such is my desire to please, I said

yes to three charities in the first month after my retirement became known and

have turned another couple down. I am to be a trustee of my local hospice: building

inpatients beds in my road, and knowing that one in four of us gets cancer and one

in three of us dies of it, that seems an important local charity to support. Becoming

a trustee of the National Association of Staff Support, a charity that aims to do

something about creating a National Health service which looks after its staff, is

explained by the fact that the Chief Executive is an ex-boss of mine. Being invited to

do something by an ex-boss is flattering the first time of asking, difficult to refuse

the second time of asking and totally impossible to refuse on the third phone call.

From our own correspondents 7


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The third is a children's charity and with a grandchild and thus a renewed interest

in child health and another former boss involved, who could say no?

So, dear madam editor, will I have anything to write about on retirement? I

promise to spare readers the agony of my arthritic knee and the distress of my

forthcoming first set of dentures. I shall try really hard to keep out of the clutches

of the geriatricians for a little while longer. But if you wish to use this open letter

as my last contribution I will be delighted to offer my services to the editor of the

newsletter of my local branch of Age Concern.

JEAN GAFFIN

August 1998

From the editor

Dear Jean,

It is with great regret that I accept your resignation. Your articles have been read

with amusement and enthusiasm, and have provided the journal with that light

touch that has been one of its hallmarks.

We all wish you a fulfilling retirement and envy the editor of the newsletter of

Age Concern.

Thank you for everything.

JEAN GOLDING



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From our own correspondents