Educating Children with Facial Disfigurement

Creating Inclusive School Communities

Jane Frances

• Publisher: Routledge
• Year: 2003
• ISBN:
  9781134464135
• Edition: 1
• Topic: Education
• Subtopic: Education General

Children and young people who are visibly different face significant social and psychological challenges at school. Educating Children with Facial Disfigurement demystifies a difficult and delicate subject. Teachers and others working in education can use this book to acquire a better knowledge of the issues involved, as well as the confidence to handle sensitive issues and foster inclusive attitudes both in and out of the classroom.

There are many causes of facial disfigurement - birthmarks, cleft lip and palate, burns, scars and serious skin conditions - so it is essential that all schools know about the issues arising from visible difference. Jane Francis examines many of these issues and demonstrates in a practical way how to deal with:

* staring, curiosity and questions, teasing, name-calling and bullying
* medical needs, special educational needs and related issues
* creating inclusive school communities
* self-perception and self-expression
* career ideas, work experience and social skills for life.

With illustrative case studies, lesson ideas and references to useful resources, this book will be of particular relevance to teachers with responsibility for special educational needs or pastoral care.

Chapter 1

Our Beliefs and Feelings about Disfigurement

Before approaching the education of pupils who look different, it is essential to pause and consider the people – primarily the teachers – whose contribution will be at the core of the inclusive education we want these children to experience.

Being there

After all the rhetoric about inclusion, and after all the to-ing and fro-ing which may have gone on to enable a particular pupil to attend a particular school, perhaps with additional support or other special considerations, the child or young person is there in the classroom. Alternatively, after an absence in hospital and perhaps a period on home tuition, a pupil returns to school with their appearance altered. Finally, it is down to the teacher. In the classroom, with the pupil who is visibly different (there may be more than one), and with all the other pupils who are perhaps more likely to be seen, and to see themselves, as ‘normal’, the teacher’s reactions are crucial. When inclusion begins to be achieved it will be largely because of things teachers do (perhaps without knowing that they are doing them) – the way they engage with their pupils, the individuality they perceive and respond to in each one of them, the futures they imagine for them.

When a teacher believes a pupil is gifted, the impact on the pupil’s performance is well established. What about other beliefs about pupils which teachers may hold?

Seeing Difference

This is not a discussion about the idea of differences and the ideal of inclusion. It concerns the feelings and beliefs about disfigurement we notice and discover in ourselves when we see a child or young person with a disfigurement, or when we watch (during a Changing Faces in-service training day for instance) some video clips of young people talking about their experience of living with facial disfigurement.

When we meet someone new, who has a facial disfigurement, their appearance is unsettling … for several seconds we are disconcerted, which makes it hard to meet the person. This is not wrong, it’s just what happens.

This unsettling initial attempt at meeting may be coloured by many different feelings and reactions. A teacher may feel embarrassed, shocked, upset, angry, vulnerable or even repulsed by a child whose appearance is unusual, or they may be touched with pity. These feelings can seem quite inappropriate and it can seem natural and right to try and expunge them from our awareness. In fact, an acceptance, internally, of our own initial feelings and reactions is an important part of being real – of not pretending, as the following teachers’ accounts clearly show:

When I visited Jamie in hospital I was so shocked. I don’t know what I’d expected but I hadn’t expected – I wish I’d been warned, been prepared somehow. I had to kind of pull myself together – saying hello, chatting, giving him the cards his classmates had done. But inside I was going, ‘Oh my God. Oh my God.’ I don’t know how Jamie coped at all – or his parents and his sister. Afterwards I was so emotional – not like me at all.

When the video cut to another person – who had been in a fire I guess and looked … unusual – I heard someone giggle. A colleague, obviously. If it had been a class of kids and not a staff meeting I’d have hauled them out and told them off for not showing respect, or whatever. As it was I could see how it was a nervous, embarrassed reaction, not an amused giggle – this colleague was mortified, of course. My own reactions? I didn’t notice – all I noticed was this giggle. Maybe it was a relief to be distracted – a relief not to have giggled myself.

The deputy head burst in, very uncharacteristically rattled, and asked me to see this family, complaining quite sharply that they ought to have told him the girl had special needs. He’d left them sitting in his office. It felt very abrupt and awkward – as SENCO [Special Educational Needs Co-ordinator], I would usually do a lot of preparation before meeting a child with their parents. In fact there were no special needs but the girl had a disfigurement. For some reason this didn’t disturb me unduly but Bob said later that all he could think of was if something like that ever happened to his own daughter.

The video clip gave me a lump in my throat. I was glad it was a training session and not someone in my class and me up there at the front having to press on regardless. Though I’m sure I would have coped – putting on the usual professional front, as you do.

With classes to teach and pupils to see to, marking and preparation, plus a hundred other things adding to the general pressure, and an Ofsted inspection coming up fast, teachers may not even pause to register fully their own reactions to a pupil’s unusual appearance. It is essential to make the time to do this. It helps us to be real, to recognize and register other people’s feelings and reactions, and especially to appreciate the pupil’s own feelings about their visible difference and other people’s reactions to the way they look. More experienced teachers of children who are visibly different face a similar challenge:

[if] sensitivity … has been lost … [and] you no longer react to a disfigured appearance when meeting someone for the first time it becomes impossible to understand the significance of their disfigurement. This can be an issue for more experienced helpers. Some develop a more blunted sensitivity to the appearance and predicament of those in their care.

Choniere et al., 1990 … [found that] more experienced nurses [on burns units] underrated the pain when this was compared with patients’ own judgements. Less experienced nurses produced closer estimates to those given by their patients.¹

Beliefs about Appearance and Disfigurement

People considered physically attractive benefit from wide-ranging social advantages² including popularity, success in job interviews, and leniency in courts of law. A brief glance at most magazines and much TV output confirms that being ‘good looking’ is highly prized. The desire to be good looking has given rise to a whole industry based on beauty products and treatments.

There are many traditions across the world and across time that link goodness to beauty and interpret disability, injury and illness as misfortunes wrought by God, or fate, or ancestors to punish a person or test or teach them in some way. Hospital patients who believe that they have been abandoned by God are at greater risk of death.³ The best and kindest intentions may lead good Christian people, for instance, to pray for someone’s healing – for a miracle, perhaps. Surely, if their life is blighted by a disfiguring condition, illness or injury, they must long to be cured, ‘made whole’. Or if not a miracle, then miraculous gene therapy or plastic surgery might help. There has even been a suggestion that whole-face transplants will soon be undertaken.

All these historical, cultural and scientific influences may seem to confirm that disfigurement blights a person’s life. In fact it is other people’s reactions to disfigurement that are the problem here⁴ – the reactions of people who are ‘severely normal’ as Geoffrey Lay puts it in his difficult book about healing ministries.⁵

It is the responsibility of future research to determine how best to educate the general public about biases and prejudices that they may have toward the craniofacial patient. The hope is that one day this research will provide the means to change societal attitudes towards craniofacial patients so that they will not have to endure the double burden of considerable social as well as surgical pain.⁶

Through its extensive work with many hundreds of people with facial disfigurement, Changing Faces has identified some important misconceptions prevalent among the general public.⁷

‘He’s so Brave

It is often thought that anyone who overcomes disfigurement is a real hero. Simon Weston, for example, is such an important role model in so many ways, especially – one imagines – for young people with serious burn injuries.

But what if the person with the disfigured appearance does not feel brave? ‘I’m not a soldier type at all. I passed my test and crashed my car. Now look at me.’

The reality is that coming to terms with disfigurement, like any other medical condition, is hard and there is little choice to be had. A person with a disfigurement will feel very down at times (as do most people) and there are ways of dealing with difficulties and making headway. The support of family and friends – and school staff and classmates – is often crucial.

‘She’ll be Fine after Surgery’

The myth of surgery is often perpetuated by by advertisements for cosmetic surgery and simplistic medical stories which seem to show miraculous ‘cures’ but often hide scarring with make-up and lighting. It also ignores the important research finding that the severity of a disfigurement (as perceived by others) has no proportional relationship to the social or psychological distress experienced or the adjustments made to it.⁸

The myth can lead to disappointment when expectations of surgery are not met. It can contribute to social difficulties being misconstrued, as when a boy with an unusual-looking blind eye was referred to hospital by his school, suggesting surgery to fit him with a proper-looking prosthetic eye to stop the other children calling him ‘one-eye’.⁹

Surgery can be very effective in treating many conditions and advances are happening all the time. However, there are many disfiguring conditions for which no effective treatment is currently available. Medical interventions can rarely remove a disfigurement completely. It is important to be informed, sensitive and realistic regarding surgical treatments.

‘He’s so Scary!’

The myth of horror created by people’s fear of the ‘unknown’ or ‘difference’ is perpetuated by stereotypical portrayals of evil characters in horror films (and James Bond films, etc.), comic strips and fairy tales as having some sort of disfigurement.

It can lead to people being afraid of anyone who is disfigured or to ridiculing them with names like ‘Phantom’ and ‘Two Face’ from popular films.

‘Impairment is an ordinary part of human life but it is feared by so many and I remind people of their fear’ was how one young man explained his constant rejection by the majority.¹⁰

In reality, moral character and outward appearances are not linked in any way. The more people with visible differences are seen in public and in the media, at school and at work, in a wide range of roles, just like everyone else, the more ordinary and acceptable disfigurement will be.

‘She’s got no Future’

People sometimes express a view that only normal-looking people succeed, and having a disfigured appearance means having a second-rate life.

There are in fact many people with disfigurements leading full lives, with careers, families, and all the usual ups and downs. Not heroes – just ordinary people. They have developed social skills and strategies, and built up their self-esteem to respond effectively each time they encounter someone who stares or doesn’t know where to look, and to overcome negative stereotypes and underestimates of their potential.

Check yourself Out

What do you see when you look at someone? There is their face, of course, their ‘looks’ – good looking? not so good looking? What about posture, body language, their physical presence? Then there is their self-presentation in terms of what they wear and how they wear it, how they have their hair, if they wear make-up or jewellery … How important is appearance for you? Your appearance? Other people’s appearance? What does a person’s outward appearance say about them? How are you affected by people’s appearance?

What do we notice about the children and young people we work with – and our colleagues and everyone else we spend time with? How good are we at registering aspects of personality, character and attitudes, the quality of their eye contact, their energy, sensitivity, imagination or humour?

What about Parents?

It may seem to school staff that a parent has somehow contributed or is contributing to your pupil’s difficulties at school. Just as it may sometimes seem to a parent that the school is ‘to blame’ for things that go wrong for their child at school. Having emphasized the importance of the teacher’s role for the pupil’s well-being at school and beyond, it is important not to underestimate the part played by parents, too, or the challenges they face.

The Destination is different – that’s all

Having a baby is like planning a fabulous trip – to Italy. You buy a bunch of guide books and make your wonderful plans.

There’s a host of things to do and see – including t...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright
• Dedication
• Contents
• List of figures
• List of tables
• Acknowledgements
• Introduction
• 1. Our beliefs and feelings about disfigurement
• 2. Having something to say
• 3. A new pupil or a pupil returning from hospital
• 4. Creating inclusive school communities
• 5. Teasing, name-calling, ostracism and bullying
• 6. Self-esteem
• 7. Social skills for life
• 8. Self-perception and self-expression
• 9. Looking anew at a pupil’s situation
• 10. Thinking about careers
• 11. Medical needs, special educational needs and related issues
• Resources
• Notes