Do children who are severely disfigured have special educational needs? James Partridge, director of the charity Changing Faces, believes that some of them do. It all depends on definitions. Only a small minority, who have moderate to severe learning difficulties as well, have special educational needs severe enough to receive a statement under the 1993 Education Act. A much larger proportion will have needs for special understanding, sensitivity and support in the classroom and help in catching up after absences for surgery which can be prolonged.
"There is, first, a small percentage of the, say, 3,000 children with disfigurements entering the school population in any one year who will also have some sort of learning difficulty which may call for a statement," says James Partridge.
"With the other, larger group of children the last thing they want is to be treated differently, but the reality is that they will be unless the school takes some serious action."
Face Values, an education pack produced in September by Changing Faces for key stages 1 and 2 of the national curriculum, suggests the kinds of action that schools can take. To safeguard children with facial disfigurements from plummeting self-esteem, self-isolating behaviour, depression, bullying and similar hazards, schools need to work out a whole-school policy on facial disfigurement and teachers are given a 13-point strategy for helping the children to integrate into primary schools.
Points range from being alert to the child's appeals for help (which may surface in aggressiveness, attention-seeking, under-achievement and so on), to taking a firm line on bullying and name-calling, responding to parents' anxieties, and helping the child to find successful ways of integrating with his or her peers.
In preparing for such action, teachers are encouraged to explore their own feelings about facial disfigurement and the messages, both verbal and non-verbal, which they are conveying to the pupils concerned and to other children in the class.
Although this well-designed pack, with its two videos, targets primary schools, further teaching materials are planned for secondary schools. Changing Faces is also producing an introductory booklet, based on the experience of producing the current Pounds 25 pack, which it intends to circulate more widely in primary schools next year. The emphasis will be on whole-school approaches.
Face Values is the first detailed resource to raise awareness of the educational needs of children with facial disfigurements. It precedes the first recognition of "severe disfigurement" in anti-discrimination law. When the Disability Discrimination Bill receives the royal assent this month it will include "severe disfigurement" as a potentially disadvantaging condition: the first schedule to the Act supplements the definition of disability laid down in Section 1. This is a victory for Changing Faces and for other charities which try to change attitudes to facial disfigurement.
Discrimination at school, at work and in social life are painful and not infrequent experiences. James Partridge cites the out-rageous example of a woman who was asked to leave a restaurant because her facial appearance might "put off" other customers. His own facial skin grafts are the result of extensive burns in a car accident when he was 18.
Until the Seventies, he says, discrimination in education against children who were severely disfigured could mean segregation in special schools whether they had a learning impairment or not. Nowadays this does not happen unless a pupil has a significant learning difficulty as well. However, the fact that mainstream placements have increasingly become the norm means that a larger proportion are potentially exposed to other kinds of discrimination.
One nine-year-old boy who was attacked by a dog was left with a jagged scar across his lip and began to be called "scar face" by some of his peers. Although his primary school acted quickly to stamp out name-calling, the experience left its mark. The boy became depressed and lost self-confidence. It was only when it became clear none of his schoolmates had appreciated the full trauma of the attack and his medical treatment that recovery could begin. Encouraged by Changing Faces and armed with some of their materials, he went back to his class to tell them exactly what had gone on. This led to a class project, with drawings and poems on the theme: "What does it matter what you look like? It's what is underneath that counts." The boy's confidence began to return.
Such problems often become more acute at adolescence. Secondary schools need to be particularly sensitive to teenagers with facial disfigurements, which can be experienced as a kind of bereavement. The pain comes flooding out and can express itself in anti-social behaviour as well as in less obvious ways. One example cited by James Partridge is that of a teenager joining a gang of boys who lifted his self-esteem but drew him into truancy and petty crime. "He had special needs which were not recognised by the school. Teachers are usually very skilled but they do not always make the link between the behaviour and the disfigurement." The loss of self-esteem may also manifest itself in educational underachievement as the motivation for academic work diminishes.
According to a survey of disability by the Office of Population Censuses and Surveys (OPCS) published in 1989 there are 19,000 children under 16 who have a "scar, blemish, or deformity which severely affects their ability to live a normal life" and the OPCS estimated that a total of 410,000 (or 9 per 1, 000) of the population of England and Wales were affected. The main causes are congenital (most commonly cleft-lip and palate and birthmarks), accidental (especially burns, scalds and scars) and dermatological (including acne, eczema and psoriasis). Society's reactions to many of these children and adults can lead to discrimination and jeopardise equal opportunities.
Face Values is a determined step in the right direction of changing attitudes. The reactions of teachers and pupils using the pack in five pilot schools in the London area are encouraging.
* Face Values is available at Pounds 25 inc. pp from: Changing Faces, 12 Junction Mews, London W2 1PN. Tel: 0171 706 4232