I fear we at Changing Faces* are going to have say this loudly and regularly:
Barely a month passes without a government department, executive agency, public body, company or charity publishing a report or new policy on equality, human rights and/or disability and yet the issue of disfigurement is often ignored, excluded or otherwise forgotten.
Why is this neglect important?
Because people with disfigurements** have a right to expect better.
They are protected from discrimination under the Equality Act 2010 ‘as if they had a disability’ and have rights for awareness of their issues and how to address them to be reported upon in the Public Sector Duty obligations of public sector bodies.
Over 1.3m children, young people and adults in the UK have a disfigurement, including 569,000 (1 in 111 of the population) with significant facial disfigurements – significant psychologically and socially (psycho-socially). Although modern medicine and surgery is increasingly sophisticated, it can rarely remove a disfigurement completely.
Every one of these people has to live in our looks-obsessed society with a face or body that attracts intrusive attention, judgement and the stigma our culture attaches to disfigurement. Because of this, they are vulnerable to low self-esteem, to being isolated and friendless, facing teasing, ridicule and staring in public, low expectations in school and at work, problems getting work, and stereotyping in the media. Just because of the way they look. It’s not just at all.
So ensuring schools, companies and politicians understand disfigurement matters very much.
They also need to recognise that making ‘reasonable adjustments’ in schools, businesses or public bodies is not a matter of ensuring good physical access or smart IT as for many disabled people. No, people with disfigurements – like those with mental health issues – need attitudinal adjustments.
And that’s not a quick fix because independent research indicates that nine out of ten members of the public find it very hard to attach positive attributes to people with facial disfigurements. And that statistic remains the same irrespective of educational status and age.
Everyone in our society has been conditioned – unwittingly – by the stereotyping around disfigurement: it’s a passport to a second-rate life in our good looks = success’ society; many people with disfigurements are odd, villains, nasty and to be avoided; and anyway, modern plastic/cosmetic surgery can fix it. All fallacious but all the reasons why face-ism exists.
Here are two classic recent examples of disfigurement being ignored.
First, at the start of December, the Shaw Trust published its annual ‘Power 100 List 2017, a celebration of Britain’s most influential disabled people‘ – slightly strange that it’s dated 2017 but maybe a clever marking tag – and I was keen to see whether some leading people with disfigurements had got a mention.
I found Katie Piper, the acid survivor and celebrity – good. But no place for Simon Weston. I searched for Adam Pearson, now a star of the TV screen with his documentaries for Channel 4 and the BBC. And Bill Cooper, Managing Director and Global Head of Insurance and Specialist Finance at Lloyds Banking Group who carries a great birthmark which he has used to transform the culture in that company. And Winnie Harlow, a woman with vitiligo who is brilliantly challenging the fashion and cosmetic world. But none of them featured.
Second, we were pleased to see the eagerly-awaited report of the All Party Parliamentary Group on Disability (APPGD) on the infamous Disability Employment Gap – but I was absolutely staggered to see that some of the main organisations enabling employers to take disability seriously were not consulted: the Business Disability Forum and AbilityNet come to mind – and just three companies and one local authority. Five academics have given their name to this report. They ought to be ashamed at the paltry research that has gone into it.
We gave evidence to the enquiry team about the problems that people with disfigurements face in getting work or retaining their posts, the existence of implicit bias and how we provide training on how employers can and should tackle it – and take our advice on recruitment and retention. But not a word in the report – even though we (and many other disability organisations) would argue that the institutionalised disabilism that the report does mention has bias, stereotyping and prejudice at its root.
What should be done?
Ultimately, Changing Faces believes that people with disfigurements will only get effective rights when disfigurement is listed as a separate protected characteristic in Britain’s equality legislation. That will take some time to bring about but we are pleased to say that the Equality & Human Rights Commission (EHRC) is starting to wake up to the problem.
Right now, though, please, we ask everyone to be our eyes and ears so that we pick up on opportunities to further this campaign.
* Changing Faces is here to help people who have a disfigurement find a way to live the lives they want. We are caring campaigners – empowering people to conquer fears, take the first steps and ultimately take control and realise their dreams. And we challenge prejudice, respect differences and speak to a world that needs to change. Please see: http://www.changingfaces.org.uk
** We use ‘disfigurement’ as a collective word for all the conditions, scars or marks that make a person’s face or body look unusual. Many people, understandably, prefer to specify their condition, for example, ‘I have a birthmark’.