Henrietta Spalding writes…
Changing Faces is extremely lucky to have a large number of supporters who have personal experience of living with a disfigurement and who are willing to share their experiences to help further our campaign for face equality. For years our advocacy work has been enriched and informed by people’s stories making our influencing come alive and illustrating the breadth of challenge that people living with a ‘distinctive’ appearance can encounter in their daily lives. Anecdotal evidence is vital to help articulate our campaigning, and demonstrate the need for change.
But as useful as anecdotes are, whenever we meet politicians and government officials and other decision-makers to press them for change, they want and need something more. Wherever we are responding to a policy consultation or providing evidence to a government inquiry, or pushing our own agenda for fair and equal treatment of people with disfigurements, they want hard facts; numbers and statistics that clearly show how many people are involved and how often they affected by inequality and unfairness. And that’s why last week we launched a major new research project called ‘Disfigurement in the UK’.
Disfigurement in the UK looks at every aspect of people’s lives, including education, work, their home life, relationships, health care, and experiences of crime, discrimination, and the justice system. The anonymous survey at the heart of the research project has lots of questions, and we believe will give us a unique and vital insight into life with a disfigurement in the UK today. It is the first time such an extensive piece of research has been carried out into the social experience of disfigurement and we’re immensely grateful to everyone who has contributed so far.
Our hope that more than a thousand people from around the UK will complete the survey before the closing date at the end of February. This will mean that we have a big enough evidence-base on which to base the first major report on people’s experience of living with disfigurement in the UK.
Responses to the survey will help and inform us to shape the charity’s campaign agenda for the future. By having a robust understanding of the issues that people are confronted with day in day out whether it is in public or in the work place, we will be able to put the case forward for urgent action from government, companies, and organisations, with both confidence and authority. We expect to be able to demonstrate that people who have a disfigurement:
- are still experiencing alarming levels of bullying and ostracism at school, and that schools are ill-equipped and lacking training to deal with it effectively;
- lack confidence in recruitment processes to confidently apply for a job in the knowledge that their appearance won’t be a factor at the interview;
- regularly experience staring, pointing, comments and sometimes even hate crime;
- often receive poorer levels of customer service;
- are nervous of using some social media and mobile dating apps for fear of negative reactions to their appearance;
- have low confidence levels in healthcare professions that the psychosocial impact of their disfigurement will be understood and treated;
- are unlikely to report hate crime to the police in the belief that they won’t be taken seriously, and have low confidence in the justice system generally; and
- have lower-than-average expectations of their elected representatives (such as MPs) to effectively represent them and take up issues on their behalf.
You might think that I am pre-judging the outcome of the research, but that isn’t the case. Every week we hear of the injustice and the prejudice that people face and these, together with our evidence bank of thousands of emails, reports, testimonials and other anecdotal evidence, strongly suggest that all of these things are commonplace, but we lack the hard, statistical evidence to substantiate it, make the case and to press for change. That’s why this research is so important.
We will be publishing the Disfigurement in the UK report on our twenty-fifth birthday, which we’re also making the first Face Equality Day in the UK on Friday 26th May 2017. Alongside activities throughout the UK in schools, the workplace and the wider community to increase awareness of face equality, we’re hoping that our report will generate media coverage. We want to use this research to show to the wider world that there’s a real need to focus attention on face equality just as much as we do – rightly – on the equality agendas on race, gender and sexuality. For far too long people with disfigurements have not had the same choices or opportunities in this country to reach their full potential and lead independent fulfilled lives and we are determined to change this.
So, if you haven’t already taken part in the survey, I’d urge you to do so, and please forward it to anyone who you think would be keen to do so. You’ll find full details on our website.
And if you would like to get involved and support Face Equality day next May, please do contact me at firstname.lastname@example.org.
Henrietta Spalding is Head of Advocacy at Changing Faces. Viewpoint represents the views of its authors only and not necessarily the policies or views of Changing Faces, its staff or trustees.
This article first appeared in the November 2016 edition of Viewpoint, Changing Faces’ monthly email for supporters. Sign up here.