Legacies of Facial Disfigurement and Stigma

Changing Faces, Registered Charity 1011222, www.changingfaces.org.uk
1914FACES2014 Les Gueules Cassées:
Disfigurement and its legacies
Facial disfigurement and fairness: a
journey… from Sidcup to today and
tomorrow…
James Partridge OBE, DSc (Hon), FRCSEd (Hon)
Founder and Chief Executive, Changing Faces

Les Gueules Cassées
Union des Blessés de la Face et de la Tête, “Les Gueules
Cassées”, created in 1921
 Why?
 Because… ‘in response to desperate needs’
 In order to… camaraderie, collective voice
 What?
 raise money
 create homes
 argue for peace and state aid
 9,000 members by 1939

Queen Mary’s, Sidcup

The Guinea Pig Club
Created in June 1941
 Why?
 Because… McIndoe’s
 In order to… promote re-integration, mutual support
 What?
 camaraderie
 welfare
 party

Rooksdown Club
Created in June 1946 by staff and patients
 Why?
 Because… losing contact
 In order to… mutual support
 What?
 advice
 welfare
 annual dinner

User groups and organisations
A taxonomy of characteristics
 Mutual sharing
 Offering emotional/psycho-social help
 Information giving about conditions and treatments
 Engaging with surgeons/scientists/raising money
 Peer to peer support re welfare/integration issues
 Advocacy/campaigning for health/social care
 Advocacy/campaigning for legal protection/benefits
 Advocacy/campaigning for wider acceptance

Stigma: Notes on the Management of
Spoiled Identity (Goffman, 1963)

Stigma: Notes on the Management of
Spoiled Identity (Goffman, 1963)
 “An individual who might have been received easily in
ordinary social intercourse possesses a trait than can
obtrude itself upon attention and turn those of us whom
he meets away from him, breaking the claim that his
other attributes have on us. He possesses a stigma, an
undesired differentness from what we had anticipated...
and he tends to hold the same beliefs about identity that
we do; this is a pivotal fact…
 “The central feature of a stigmatised individual’s situation
in life is a question of ‘acceptance’. Those who meet him
fail to accord him [it and] he echoes this denial by finding
that some of his attributes warrant it.

Stigma (continued)
 “The moments when stigmatised and normal are in the
same social situation… are encounters which can be so
daunting that the stigmatised simply arranges his/her life
to avoid them. [When they do take place, they are] one
of the primal scenes of sociology… [a moment] when the
causes and effects of stigma must be directly confronted
by both sides”.
 “The stigmatised individual may find that he/she feels
unsure of how we normals will identify and receive
him/her. He is likely to feel ‘on show’ having to be self-
conscious and calculating about the impression he is
making to a degree and in areas of conduct which he
assumes others are not. Even when he achieves
something creditable, he is likely to feel that others view
these as ‘remarkable in the circumstances’.”

Stigma for people with disfigurements
People with facial disfigurements experience ‘a loss of
civil inattention that… most people take for granted’:
“In their attempts to go about their daily business,
people with disfigurements are subjected to visual and
verbal assaults, and a level of familiarity from strangers
not otherwise dared: naked stares, startled reactions,
double-takes, whispering remarks, furtive looks,
curiosity, personal questions, advice, manifestations of
pity or aversion, laughter, ridicule and outright
avoidance.”
Frances Cooke Macgregor

About Changing Faces
Mission:
To create and work for a better and fairer future for people of all ages
with face and body disfigurements from any cause
Organisation:
 set up in 1992, underpinned by user views and research
 raises £1.6m pa from voluntary donations
 has 30 full-time posts (18 f-t, 19 p-t) in London with Officers in
English Regions, Wales, Scotland and N Ireland
 manages the Skin Camouflage Service with 195 trained volunteers
in 140+ NHS clinics and centres
Programmes:
 Changing Lives: to build self-esteem and confidence of individuals
and families
 Changing Minds: to promote face equality for all whatever their face
or body looks like free of prejudice and discrimination

Living with a disfigurement: the
common issues
1. INTRA-PERSONAL: low self-esteem in ‘good looks’ culture;
prevailing belief that good looks and success go together; links
with baddies, low IQ etc
2. INTER-PERSONAL: self-confidence challenged in dealing
with other people’s reactions; many problems can be traced
back to social interaction difficulties (eg: staring, teasing,
comments, questions, playgrounds, school, public places,
strangers, relationships, employment) – everyone is vulnerable
to negative attitudes…
3. MEDICAL ISSUES: unresolved questions about medical and
surgical choices/access + lack of psycho-social help in NHS,
school and work

CHANGING LIVES: The FACES Package
Successful adjustment to a disfigurement involves an
individual and family having access to help (and/or social
support) that enables them to gain the life-skills to manage it.
The FACES package involves:
F FINDING OUT about their condition and its treatment
A Getting ‘ATTITUDE’, a positive outlook/belief about future
C COPING with feelings (anxiety, anger, loss, intimacy etc)
E EXCHANGING experiences with others
S SOCIAL SKILLS training to manage others’ reactions
FACES can
 be delivered by Changing Faces Practitioners and
suitably-trained health care professionals
 be accessed in self-help format from our website and via
FACE IT and be facilitated by support groups

CHANGING LIVES: Skin Camouflage
 The Skin Camouflage Service is delivered by 200
trained volunteer Practitioners
 Gives advice on how to self-apply camouflage creams
that are on the NHS prescription list
 Main beneficiaries are people with vitiligo, rosacea,
scars (including after self-harming) and birthmarks
 We operate 140 clinics monthly across the NHS
 Referrals come mainly from dermatologists, plastic
surgeons and GPs

CHANGING LIVES: Training and advocacy
 Training health (and other) professionals about the
psycho-social aspects of disfigurements
 Study Days
 Master-classes
 Training and induction of CFPs
 Advocacy for improved psycho-social care
 Patient pathway guidelines of NICE and CRGs
 Commissioning
 Training/curricula of NHS consultants, nurses etc

The human experience of
“looking different”…

UNCONSCIOUS ‘facial prejudices’
1. The prejudice of the ‘scary’
 People with disfigurements are often viewed as
‘different’, outside of the normal – or even nasty…
leading to ridicule, ostracism and harassment
2. The prejudice of the sad and second-rate
 People with disfigurements are expected to live only a
sad and second-rate life (because ‘good looks’ are
believed to be the key to success)… leading to
sympathy and low expectations
3. The prejudice of a medical/surgical fix
 People with a disfigurement are assumed to need a
medical fix or reconstructive/cosmetic surgery – and this
will, it is assumed, make them happy. It’s up to them to
be “fixed” by medicine or a surgeon – not up to the
public to change their attitudes.

UNCONSCIOUS ‘facial discrimination’
 Facial discrimination is often unwitting and
unintentional – it can be seen in the behaviours of the
public, professionals and institutions (eg: the media) and can
be institutional discrimination.
 Examples include:
 uncontrolled staring
 name-calling and bullying
 ridicule and pointed jokes
 patronisation (eg: ‘so brave’)
 avoidance of contact and eye contact
 ostracism and discounting
 half-hearted support/lip service
 low expectations
 loaded job descriptions

Challenging the prejudice of the ‘scary’

Campaigning for face equality
Cinema portrayal
 See the Leo film:
https://www.changingfaces.org.uk/Face-Equality
 The Lone Ranger – see our response:
https://www.changingfaces.org.uk/show/feature/preview/hp-
lone-ranger-2013
Challenging public ridicule
 Jeremy Clarkson on BBC’s Top Gear re ‘elephant car’
 Moshi Monsters: the Glumps Family
 Powwownow advertising campaign

Challenging the prejudice of the sad
and second-rate
 New campaign to transform the expectations and
confidence in the workplace of people with
disfigurements and employers
 Successful role models
 Guidance
 See www.whatsuccesslookslike.org.uk
 #faceequalityworks
 @FaceEquality
And poster campaigns and C4 news-reading stunt

Challenging the prejudice of a
medical/surgical fix
Changing Faces aims to convey and promote realistic
expectations about medicine and surgery. We have taken the
position that patients need to be fully informed about all
interventions in the consenting process.
We have been at the forefront of public debate about the
pros and cons, benefits and risks of:
 Reconstructive surgery
 Face transplantation
 Cosmetic surgery and other aesthetic interventions

CHANGING MINDS: For face equality
 Seeking to influence public attitudes and behaviours by
campaigning for ‘face equality’ by:
 influencing the education sector and employers to create
inclusive environments
 lobbying for sound anti-discrimination protection and
enforcement
 finding creative ways to raise public awareness
 actively seeking to counter public examples of facial
prejudice, ridicule and stigma
See www.facebook.com/changingfacesuk

Legacies of Facial Disfigurement and Stigma

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