what are you staring at?
by Sarah Myers
When Hollyoaks' feisty teen Darlene is pushed through a glass window and left with a large, permanent scar on her face, she feels her life is over. Every day we're bombarded with images (in magazines, advertising and other media) subtly persuading us that perfect looks equal happiness and success. Living in a society that places such an emphasis on appearance can mean people who look visibly different face serious barriers in attitudes and behaviour.
© C4
It's estimated that about 40,000 adults and children in the UK have significant disfigurements to their face or body. Some people have been scarred by accidents, like Darlene, others are born with disfiguring conditions. These include birthmarks, cleft lips and palates or unusual formations of the skull and other features such as craniofacial syndromes like Apert Syndrome and Crouzon Syndrome. Permanent changes to the face or scarring can also be caused by treatments for diseases like facial cancers, or skin conditions like acne, eczema and vitiligo (where patches of skin lose their colour, leaving white patches) or neurofibromatosis and epidermolysis bullosa (which alter the texture of the skin).
treatments and disguises
There are a number of treatments available for facial disfigurements, but they are rarely miraculous cures. Modern reconstructive surgery and medical treatments can be effective in making some unusual features much less noticeable but don't usually remove them completely, leaving some scarring or change to the skin. Scars can often be made less prominent through skilled plastic surgery, but can't be removed completely. They also tend to soften over about two years, which makes them less noticeable.
Another method for disguising some facial disfigurements is camouflage make up. It's not effective for everyone, but can help with certain conditions like vitiligo, scarring and some birthmarks. It's best to speak to a specialist about the most suitable creams for individual skin types. See help and info, below, for information about finding a specialist in your area.
Counselling, support groups and social skills training are also effective ways to help people with facial disfigurements – and can often be useful alongside medical interventions. Organisations like Changing Faces or the Disfigurement Guidance Centre (see help and info) are there to support people living with disfigurement and can offer advice on all types of treatment.
sudden changes
For people disfigured through an accident, attack or a disease, there's not only the change in appearance to deal with, but the traumatic event that's caused it. For example, if someone has had surgery for facial cancer, they've had to go through the effects of such a serious diagnosis as well as the resulting scar. "A person who has recently acquired a disfigurement may feel more emotionally traumatised than someone who has been living with their disfigurement for many years," says Bernadette Castle, an Adult Specialist and Counselling Psychologist at Changing Faces. "They may be still grieving for the loss of their appearance hence making it more difficult to have the capacity to put all the coping strategies into place. We advise them to take things more gently and make use of support around them until they feel stronger."
facing the challenges
Whatever has caused a person to have an unusual appearance, they will often find themselves at a disadvantage in a social situation. For many people, meeting someone with a disfigurement for the first time can be an uncomfortable experience. They don't want to stare so they look away, avoiding eye contact and depriving the person of an important aspect of communication.
Bernadette Castle says that these uncomfortable meetings can reinforce any negative feelings that the person with the disfigurement might have about themselves. She also notes how people with faces that are visibly different can feel like they're 'on duty' all the time, lacking the anonymity that others take for granted. "They often have to cope with staring, double-takes, intrusive questions, abuse, discrimination, teasing and bullying. These can inevitably have consequences on the person's self-esteem and self-development." The problems that arise can lead to isolation, anger and depression.
Chris's story
Chris was born with a cleft palate. "I can quite see why some people would become very reclusive but I was lucky – my parents were very supportive, and my sister too, which made a great difference. My mum's comment was always, well you're lucky you've got a brain! Her view was that there were worse things in life, basically, than a cleft palate. I'm married with two kids myself now, and the kids have never asked about it – although they have asked my wife. We've been married 17 years now. I sometimes tease her about her nose, and her standard retort is that I'm only jealous because I haven't got one! And the first time she said this in from of my parents and sister they were quite taken aback! But it's daft to pretend there's not a difference. I had girlfriends before at uni, and quite honestly, I found most people there saw the person and not just the face."
coping strategies
John was born with a haemangioma (a type of birthmark caused by an abnormal collection of blood vessels just below the skin) and port wine stain birthmark. As he's got older, he's become more sensitive to other people's reactions, adopting different ways to cope with staring. "I've been going to Notting Hill Carnival every year since I was about 13, and it's only now that I'll wear dark glasses, so I don't have to deal with every passer by looking at me. It's one of my strategies. I know people will look, and sometimes stare, and some days it's fine and others – well, it gets to me. But what I look like is only part of who I am and people soon realise that."
Coping strategies are very personal. It takes time to find ways that suit the individual, their personality, sense of humour, and that they feel comfortable with.
Jessica's story
Jessica has Apert syndrome: "Along with other things it means that my face looks a bit different, it's because the bones in my head were fused together before I was born. Sometimes I feel angry and want to say to people, 'what are you staring at?' and other times when people start I'll stare back – or just smile at them! I've practised a few strategies with my mum. For example, if someone said to me 'what's happened to your face?' I'd like to be able to reply 'oh my goodness, I hadn't noticed, thanks for telling me' and use humour to diffuse the situation, but I'm not sure I could do that yet. I'd have to be feeling very positive."
If you have an unusual face, there's lots of advice out there on how to tackle certain scenarios. It can help to practise them with a friend, family member of counsellor. For example, if someone is staring and you want to let them know you are aware of it and want it to stop, try this: look back at them firmly, smile or nod – this let's them know you are aware of them. If you decide to say something, you can choose from a number of different approaches:
- I would prefer it if you did not stare at me.' (assertive and simple)
- Does my face bother you? It doesn't bother me!' (confident, assertive and labelling the starer as the one with the problem)
- Don't worry, it isn't catching!' (humorous but making the point that the starer is behaving intrusively and inappropriately).'
[This advice comes from Everybody's staring at me! – how to communicate when you have an unusual face (published by Changing Faces). The booklet includes many other scenarios and possible ways to deal with them.]
help and info
Channel 4 is not responsible for the content of third party sites.
organisations
BM The Birthmark Support Group
London WC1N 3XX
Tel: 0845 045 4700
E-mail: info@birthmarksupportgroup.org.uk
Website: www.btinternet.com/~birthmarksupportgroup
Provides support and information to anyone with a birthmark through raising awareness amongst the medical profession about correct treatments and helping ensure that social interaction is managed with appropriate care and understanding. Publishes a newsletter and organises various group activities.
British Association of Skin Camouflage
PO Box 202
Macclesfield SK11 6FP
Tel: 01625 871129
E-mail: basc9@hotmail.com
Website: www.skin-camouflage.net
Exists to promote, support and further the remedial techniques of camouflage, helping patients to face the world with confidence.
The Burn Survivors Association
11 Caterwood
Billericay
Essex CM12 OAP
E-mail: burnsurvivorsassociation@hotmail.com
Website: www.burnsurvivorsassociation.com
An independent association for burn survivors, their families, and friends that aims to form a community of burn survivors in the U.K. Their site has lots of useful links to other organisations and support groups.
Changing Faces
The Squire Centre
33-37 University Street
London WC1E 6JN
Tel: 0845 4500 275 (office hours)
E-mail: info@changingfaces.org.uk
Website: www.changingfaces.org.uk
Supports and represents people who have disfigurements of the face or body from any cause. Offers advice to people of all ages and their families as well as support groups, employers and professionals. Publishes many books and a newsletter as well as running workshops, regional days and other activities across the UK.
Facing the World
5a London Serviced Office
266 Fulham Road
London SW10 9EL
Tel: (+44) 207 352 0052
E-mail: info@facingtheworld.net
Website: www.facingtheworld.net
Founded by craniofacial surgeons to treat the most severely disfigured children from poor countries worldwide who are at the end of other peoples' queues.
Let's Face It
72 Victoria Avenue
Westgate On Sea CT8 8BH
Tel: 01843 833724
E-mail: chrisletsfaceit@aol.com
Website: www.lets-face-it.org.uk
Offers friendship on a one-to-one basis, links families, friends and professionals and assists people with facial disfigurement to share their experiences, struggles and hopes. Also provides continuing education to health professionals concerning the lifelong needs of people with facial disfigurement.
Outlook
Disfigurement Support Unit
Ward 22
Frenchay Hospital
Bristol BS16 1LE
Tel: 0117 975 3889
Website: www.nbt.nhs.uk/services/surgery/outlook/default.htm
A confidential NHS service for anybody experiencing emotional or psychological problems linked to a disfigurement. Also provides information, support and training to health professionals. Based in Bristol but open to anyone who is able to travel for an appointment. Referrals only.
The Red Cross
Colwell Drive
Abingdon OX14 1AU
Tel: 01235 552674
Website: www.redcross.org.uk/localservice.asp?id=1224
The Red Cross has trained volunteers who can teach individuals how to self-apply specialist camouflage creams for people with scars or other disfiguring skin conditions. For further information or to become a volunteer for this service contact their Abingdon office.
Saving Faces
The Facial Surgery Research Foundation
St Bartholomew's Hospital
West Smithfield
London EC1A 7BE
Tel: 020 7601 7582
E-mail:savingfaces@mail.com
Website: www.savingfaces.co.uk
Facial diseases and injuries are mainly treated surgically and Saving Faces aim to carry out collaborative research with top facial surgeons in the UK to determine and promote the best current treatment through clinical trials and central data collection.
websites
Disfigurement Guidance Centre
www.skinlaserdirectory.org.uk/dgc.html
Provides support and information for disfigured people and their professional advisors and publishes a range of illustrated booklets.
Face Race
Article on Channel 4's Science website discussing human face transplants.
Patient UK
www.patient.co.uk
A directory of UK websites that provide information on all aspects of health, disease and illness.
The Scar Information Service
www.scarinfo.org
Run by Smith and Nephew this site provides information about scars and scar therapies.
Skin Camouflage Network
www.skincamouflagenetwork.com
Contains information for people interested in becoming a skin camouflage practitioner and can assist people who want to know whether there is a skin camouflage clinic in their area.
Skin Deep
www.bbc.co.uk/…
A woman's experience of vitiligo and a chance to hear the related Radio 4 programme.
Sophie Martin-Canning
http://icbirmingham.icnetwork.co.uk/…
Article from Birmingham's Evening News about the author of the novel based on her own experiences overcoming facial disfigurement (see reading, below).
What Are You Staring At?
www.bbc.co.uk/ouch/tvradio/wsa/
Site accompanying the BBC series featuring stories of people with facial disfigurements, including views from those who opt for surgery and those who don't.
reading
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Autobiography of a Face by Lucy Grealy (Methuen, 2004) |
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Journeys Through Hell: Stories of burn survivors' reconstruction of self and identity by Dennis Stouffer (Rowman & Littlefield Publishers, 1994) |
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Kissed by the Angels by Sophie Martin-Canning (Transcendence Books, 2004) |
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Moving On by Simon Weston (Portrait, 2004) |
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Changing Faces: The challenge of disfigurement by James Partridge |
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Your Child in the Hospital: A practical guide for parentsby Nancy Keene and Rachel Prentice (O'Reilly, 1999) |
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(January 2005)
