1914 faces2014 exeter march 2015

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

https://www.changingfaces.org.uk/Face-Equality

https://www.changingfaces.org.uk/show/feature/preview/hp-lone-ranger-2013


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

http://www.whatsuccesslookslike.org.uk/


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

1914 faces2014 exeter march 2015

Presentations & Public Speaking