#WhereIsDisfigurement? Two classic examples

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.

#WhereIsDisfigurement

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.

 

Notes

* 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’.

Celebrating excellence in diversity practice

I was delighted to have been asked to speak and give the Lifetime Achievement Award at the Excellence in Diversity Awards in Leeds last week – what a great celebration it was!

I was honoured to speak at the Excellent in Diversity Awards last week

I was honoured to speak at the Excellent in Diversity Awards last week

Congratulations to everyone who was nominated – and the winners should be very proud… and especially to Karin Woodley, Chief Executive of Cambridge House who was given the Lifetime Achievement Award. I salute you!… and what a superb speech you made… “fighting for social justice is our moral obligation”…

Here’s what I said:

I am very pleased to hear that there have been so many excellent submissions for these Awards this year – and that the numbers are rising year on year. This message should go our loud and clear into our society which sadly, is too often characterised as narrow-minded and prejudiced. Not true. Respect, diversity and inclusion are thriving.

What tonight proves is that many many companies and organisations ‘get it’ – they understand the argument that diversity is good for their organisations and good for business – and they want to tap into the strength of the diversity of our society.

At the risk of preaching to the converted, let’s just revisit why investing in diversity can give organisations and companies a competitive edge and bottom-line advantage… three simple reasons:

  • because they can attract the most talented people to work for them
  • because they can retain staff who go through life-changing experiences
  • because they can attract customers who might not shop with them.

Simples.

I am glad to say that Changing Faces has worked with many companies across the UK to help them embed respect for ‘face equality’ and so enable them to attract people with unusual faces into their workplace, retain them if they go through a difficult experience – like a facial cancer or a Bell’s palsy – and ensure that people like me get excellent customer service… and aren’t asked ‘Cor, what happened to you?’ at the check-out desk. Yes it happens.

But we also run into the usual excuses – ‘we are dealing with gender equality this year’ and ‘we are fully trained on disability so don’t worry’. Sadly, it is often not until one of our users reports a bad incident that companies are impelled to do something.

Similarly, in 15 years of Dining with a Difference events, I have been amazed at how the top Boards of big companies frequently do not ‘get it’… They fail to see that disability, disfigurement and diversity are important strategic business issues not just annoying HR problems. Dining has lots of light-bulb moments for them…

I think there is one factor that marks out organisations and companies that ‘get it’ and those that don’t – they have a champion in a senior or high-level position who gets it and is determined to embed ‘it’ into the very fabric of the organisation.

A classic example was a major bank for which we ran a Dining event… we were told that many of the top Board were coming and were tasked with getting one of them as champion… at the end of the evening, the Finance Director got up to say ‘thank you’ and completely unprompted, announced that he’d put his hand up to be the company’s Disability Champion.

He kept his word and went on to become the Chief Executive. The whole company’s approach to disability – and diversity across the board too – changed.

So my message to you this evening is actually a challenge: I task you all with finding and nurturing the next generation of champions on diversity and inclusion in your organisations to take the embedding up to the next level.

New year, old stereotypes

Happy New Year everyone – and I’d like to start on an upbeat note … but sadly not.

‘The Undateables’ returns to Channel 4 for a new series on Monday night.

For the last four years, this series has brought together people who have medical conditions, disabilities and disfigurements with others with similar conditions (and in some cases no conditions) in an attempt to find love.

undateables

And the good news is that there have been some notable successes, such as Brent and Challis, and our very own Steve and Vicky, whose wedding we’ll see in the new series. Sadly, however, the directors have made no attempt to correct the impression that people who look unusual don’t have love affairs – of course they do! And without the need for a TV show!

But like many programmes from the production company ‘Betty’, my biggest issue is with the show’s title.

As Changing Faces said before the first series back in 2012, the title ‘has the potential to cause unnecessary offence, to perpetuate stigma and encourage abuse or harassment of people with facial disfigurements and disabilities’.

Last summer, the issue was raised at the British Medical Association conference, when doctors accused the programme of exploitation; earlier, the UK Disabled People’s Council said the programme ‘posed a threat to the rights of disabled people under the UN Convention on the Rights of Persons with Disabilities’, and said it was ‘unwatchable’. Jessica Middleton provides an insightful analysis of the title in this blog on The Badger.

Clearly, however, the fact that the programme won a BAFTA nomination, high ratings and lots of social media noise indicates that it’s anything but unwatchable. But if you care to look at the social conversations taking place, many of them follow the line: “I hate the title, but love the show”.

One of the most troubling effects of the show’s title is the suggestion that people who have a disability or disfigurement are outsiders, people you wouldn’t expect to find on Tinder, or meet in a bar, or at a speed dating night. Other dating programmes perpetuate the stereotype.

I’m no fan of ‘Take Me Out’ – it’s rather vulgar in my opinion – but why has it never featured someone with a disfigurement amongst the 15 female contestants in each show? I’m sure some ‘Take Me Out’ fans will remind me of Tony, the man who lost a leg in a football accident, who appeared on the show. But he was the sole male contestant – choosing from fifteen female contestants. Hardly a balanced position.

Slightly better is the other Channel 4 hit, ‘First Dates’. In the last series we met Chuks, who was born with short arms. And in the new series – beginning later in January – we’ll see Arunima, who’s a wheelchair user. And so whilst we can – gently – applaud ‘Take Me Out’ and ‘First Dates’ for having some representation of disability, neither have ever shown someone with a facial disfigurement.

Is that because a facial disfigurement is just too undateable? Could it be that four years of perpetuating the myth of someone with a facial disfigurement being unlucky in love has pushed this form of physical difference beyond the pale?

Proof of the negative way that the title has played out comes in a number of forms. TimeOut magazine has an ‘undateables’ column in their New York and some other editions. Instagram and other social media channels are full of people, mainly teenage girls, complaining that they are ‘undateable’ on account of their looks. Even Battersea Dogs Home now use the word to describe hard-to-rehome pets, animals that the Dogs Trust have called ‘sticky dogs’ for a number of years.

Last spring, on the Changing Faces Facebook page, we invited our supporters to submit photos of their wedding day. It quickly became our most popular Facebook post ever, demonstrating that people who look different don’t love any different. Indeed, our recent supporter survey found that more than two thirds of our supporters are either married or living with a partner. Only around one in five said they were single.

And if you’re wondering: I’ve just spent a wonderful family Christmas which included celebrating the wedding of our third ‘child’.

Changing Faces publishes guidelines for broadcasters on the importance of the language they choose to use – and that includes in their titles. They align with our guidelines for journalists, with which we regularly challenge newspapers – sometimes with some success.

In my view, it’s not good enough to say, “Oh, it’s just a title, the programme is good once you watch it”. Three million people may do that. But what about the attitudes of the rest of the population? Still shaped by such worn-out stereotyping, I’m afraid.

Rightly in 2016, we wouldn’t tolerate a show about women looking for love called ‘Lesser Sex’, nor one about lesbian, gay or bisexual people called ‘Queer Love’. For me, ‘The Undateables’ is just as offensive, and until production companies and broadcasters can be responsible with their show’s titles, we’ll remain a depressingly long way from achieving face equality, eight years on from the launch of our campaign for it.

Let’s make 2016 a year to throw out these titles once and for all!

325 pages is not enough but…

The World Report on Disability is impressive and will inform understanding and action to promote fairer and more accessible societies around the world for years to come.

Given the immense diversity of disability, it was not possible for the Report to describe all the health conditions that give rise to impairments, including those affecting the face nor how the interaction between people with these conditions and the social attitudinal and environmental barriers can “hinder their full and effective participation in society on an equal basis to others”. Nor could the proven interventions to remove these barriers and to empower individuals be referenced.

For example, recent evidence suggests that many of the 1.3 million people with a condition, injury or marking that affects their appearance in Britain are effectively denied opportunities to work. Over a third of the people recently surveyed said they had avoided applying for particular roles, because they feared others would have a negative reaction to their appearance.

In the spirit of the Report, Changing Faces is determined to continue working hard to ensure that public and employer attitudes towards people with unusual-looking faces are inclusive of all – and the good news here is that 35 major employers with a combined workforce over 1 million people have committed to embed ‘face equality’, to ensure that everyone is treated fairly and equally irrespective of their appearance.

But that’s not all. It is also of critical importance that people with an unusual appearance get the right information, support and social skills advice, at the right time. That’s in very short supply except through Changing Faces and some islands of good practice in the NHS. We will look to the new Clinical Commissioning Groups to ensure much improved access throughout the country.