So as most of you probably know, I haven't blogged for the past few days because I was at our bi-annual Moebius Syndrome Foundation Conference 2014, this time held in North Bethesda, Maryland. It was a wonderful, moving experience--as always. I met some new, terrific people--as always. And I re-connected with great people who I am proud to say are my friends, and there is nothing so terrific as that.
And as always, I learned a great deal. So let me in the next few days write and muse about just what I learned. First of all: we had an excellent opening keynote speaker, on the conference's first day. His name was James Partridge, and he leads an organization from the UK called Changing Faces. Here's some more about him, which I found here:
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is the Founder and Chief Executive of Changing Faces.
When he was 18 James Partridge was severely burned in a car fire that changed his face, and his life, forever.
After
a period of recovery in intensive care, James spent a gruelling ‘gap
year’ in hospital having reconstructive surgery for the 40% burns to his
face and body, before going up to Oxford as planned. Every vacation
and the whole of his third year were then sacrificed to the surgeon’s
knife, before he graduated in politics, philosophy and economics in
1975. He embarked on a Masters in Demography at the London School of
Hygiene and Tropical Medicine, which led on to academic appointments in
health economics at St Thomas’ Hospital and at Guy’s Hospital, London.
In
1979, he exchanged academia for farming and a teaching post in A’ level
economics, in Guernsey, where his wife, Caroline, was born and brought
up.
James was determined that the unique insights gained during
his prolonged recovery should be put to positive use, so early mornings
in the milking parlour were interspersed with periods of writing,
culminating in the publication by Penguin of his book Changing Faces,
the Challenge of Facial Disfigurement in 1990.
The warm response
to this led him to relinquish life as a dairy farmer to found Changing
Faces in 1992 to pass on the lessons learned, and to work for the rights
and inclusion of people with facial and body disfigurements.
The
charity has, from the outset, been underpinned and informed by academic
evidence and research. It partnered the University of the West of
England, Bristol, in setting up the first Centre for Appearance Research
in 1998, which is now a fully-fledged research centre with 28 attached
academics. The University recognised James’ contribution to academic
research by granting him an Honorary Doctorate of Science in 1999.
As
well as directing Changing Faces, James has served on many committees
and panels bringing disability, human rights, user, consumer and lay
perspectives to bear on a range of subjects. He is also a founding
partner of Dining with a Difference,
which aims to challenge and change the way chief executives and
directors of private and public organisations address disability as a
strategic business issue. Over the years Dining has made a major impact
on the thinking of organisations such as the Royal Mail, Barclays and
Jobcentre Plus.
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So what does Changing Faces try to do? Here's an excerpt, found here:
Welcome to Changing Faces. We’re a charity for people and families
who are living with conditions, marks or scars that affect their
appearance.
Our work is divided into two areas:
Changing Lives
We aim to help individuals lead
full, confident and satisfying lives. We give practical and emotional
support to adults, children and their families. We also provide
training, support and advice to professionals in health and education.
Changing Minds
We aim to transform public
attitudes towards people with an unusual appearance. Our goal is 'face
equality' and we promote fair treatment and equal opportunities for
all, irrespective of how they look. We campaign for social change:
lobbying for integrated health services; influencing schools and
workplaces to create more inclusive environments; and pushing for
anti-discrimination protection and enforcement.
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And something that really interests me is Changing Faces' "Face Equality" campaign. Here's more:
Changing Faces launched the Face Equality on Film campaign in
2012 calling for balanced portrayals of people with disfigurements in
films.
More than a million cinema goers were invited to challenge their assumptions about a character in a short film called ‘Leo’ starring actress, Michelle Dockery, and Leo Gormley, a man with burn scars. The film was shown in 750 Odeon cinemas nationwide.
A YouGov survey commissioned by the charity found that bad teeth,
scars, burns and other conditions affecting the face are viewed as the
most common indicators of an evil or villainous character in a film.
Ethnic minorities, bald and disabled people are all thought to be
portrayed in more diverse ways than those with disfigurements.
James Partridge, CEO of Changing Faces, said: “We’re so used to
seeing people with disfigurements portrayed as the villain in films that
it may be hard for people to imagine they could ever play someone’s
friend, the Dad picking up his kids from school, the US President, or a
lover.
“It would seem as if all the film industry has to do to depict evil
and villainy is apply a scar or a prosthetic eye socket or remove a limb
and every movie goer knows that it’s time to be suspicious, scared or
repulsed.
“The problem is that, for those who actually do have facial scars or
whose faces are asymmetrical as a result of cancer, strokes or birth
conditions, the way that people react in the cinema can spill over into
the way they are treated in everyday life. It can encourage people to
make moral judgements based on what they see on the screen.
“Freddie Krueger, Scarface and Two-Face are just some of the names
that our clients get called at school, on the street and at work. They
have to put up with people laughing at them, recoiling, running away or
staring in disbelief that they can and do live a normal life. Changing
Faces hopes the film and campaign will encourage audiences and the wider
film industry to think about how disfigurement can be portrayed in a
more balanced way.”
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And here is a link to their short film called "Leo."
These are all things we need to think about. Check out Changing Faces' website. It is very valuable.
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