Changing Faces – Written Evidence (EQD0131)

Changing Faces – Written Evidence (EQD0131)

House of Lords Select Committee on the Equality Act 2010 and Disability: Call for Evidence

1. The UK’s only disfigurement charity, Changing Faces is pleased to offer evidence to the House of Lords’ Select Committee's post-legislative scrutiny during the autumn of 2015 of the Equality Act 2010 particularly concerning ‘the impact of people with disabilities’.
2. We welcomed the inclusion of ‘severe disfigurement’ as a legal ground for discrimination under the Equality Act 2010, as in the Disability Discrimination Act (DDA) 1995. It reflected then and continues to reflect the need to respect, protect and promote the rights of the many people living with disfigurements in Britain.
3. However we have strong reservations, set out below, about how well it works in practice and whether vulnerable individuals are able to seek and secure effectively the legal protection they need.

Background

Who are people with disfigurements and what is their experience?

4. Changing Faces works with and for people with disfigurements from any cause (see Annex for more detail). There are many causes for disfigurements some of which are present at birth but most are acquired during life. Disfigurement can affect anyone from any demographic group and at any time in life.
5. Although modern medicine and surgery is increasingly sophisticated, the reality is that it can rarely remove a disfigurement completely. And because the face is at the centre of every human being’s self-image and the social canvas on which they portray and share their personality and signal their moods and intentions, facial disfigurement can greatly affect a person’s self-worth and how others perceive them. Disfigurements to other parts of their body can also affect their self-image and how others react.
6. At least 1.3 million children, young people and adults in the UK are estimated to have significant disfigurements, including 569,000 with facial disfigurements, one in 111 in the population. They all have to live with a face or body that attracts intrusive attention and the stigma our culture associates with disfigurement[1]. They report feeling self-conscious, isolated and friendless, facing teasing, ridicule and staring in public, low expectations in school, problems getting work, and stereotyping in the media because of the way they look.
7. We believe that children and adults with disfigurements are not treated fairly in Britain’s looks-obsessed culture. Their opportunities are restricted and their risk of low self-esteem and poor mental health is much higher than that of the general population.
8. How does the unfairness manifest itself in everyday life? According to our users and independent research, it comes in many forms:
9. In public: unfair treatment is apparent in many settings. People with disfigurements are much more vulnerable than others to be subject to intrusive questions, ridicule, staring, harassment and physical attack. A YouGov survey (‘Attitudes to Disability’, 16-20 October 2003) found that 85% of the British public thought that people with facial disfigurements were likely to be discriminated against. Result: many people avoid public situations and can become socially isolated and house-bound.
10. In the media: people with unusual looks are rarely portrayed as ‘ordinary’ people on TV being instead either heroes, the subject of medical documentaries (often with stigmatising titles like ‘The Ugly Face of…’) or typecast as odd or villainous[2]. This perpetuates stereotyping and allows humour to be deemed acceptable when it is actually offensive. The lack of positive portrayals reinforces low expectations about people with disfigurements. Result: people’s self-esteem and self-image can be very damaged and negative.
11. In commerce, films and retail: disfigurements are still used as a lazy way of characterising villains and unpleasant people in retail offerings and the cinema. Recent examples include the ‘Glumps family’ in Moshi Monsters toys (the subject of an Early Day Motion in 2014) and The Lone Ranger  film with its accompanying Lego toy of ‘a ruthless outlaw whose terribly scarred face is a perfect reflection of the bottomless pit that passes for his soul’ – a description changed only after our intervention. Result: people of all ages are vulnerable to out-dated stigma.
12. In school: children are more likely to be bullied, subjected to name-calling and ostracised by their peers and teachers can under-estimate their potential. Despite our work in schools and with Ofsted, 90% of the children and young people who contact us say they have been bullied. Many schools still lack the expertise for preventing appearance-related bullying. Result: under-achievement, unhappiness, isolation, self-exclusion and truanting; suicide and self-harm on occasion.
13. At work: interview panels have been shown to discriminate against people who have unusual features[3]. A small survey conducted by Changing Faces in 2014 showed that 60% of unemployed respondents believed their appearance was the main reason they were out of work, whilst 50% felt colleagues treated them differently because of the way they looked and 30% experienced outright hostility and bullying. In addition, evidence from case study research suggests that many people who have disfigurements do not have the same opportunities in the workplace compared to people without disfigurements. At work and as consumers, there is also a greater chance that people will be harassed or poorly served: a survey by Personnel Today in 2007 found that more than eight out of 10 respondents in society believe it's acceptable to tease people with ginger hair, while more than 70% said that blonde hair, regional accents, baldness, dress sense and shortness were also fair game. More than half said that being overweight, tall, having an unusual name, wearing glasses or having large body parts - be it breasts, ears or nose - made it acceptable to poke fun, while those with dandruff, acne, a speech impediment, bad teeth, body odour, small breasts or who were underweight were also regarded as being fine to tease. Many companies know that their workforce does not reflect Britain’s diverse population and that staff need more sensitising to customers with unusual looks. Result: unemployment, under-employment, low expectations and poor customer service.
14. Why does this happen? Our analysis is that facial prejudice (which causes  disfigurement discrimination) is deeply rooted in the public mind. In 2008, an independent study of public attitudes commissioned by Changing Faces showed that whilst claiming not to treat people with facial disfigurements unfairly, nine out of 10 people found it very difficult to associate positive characteristics to them. They were seen as less attractive and could not expect as much from life, less likely to be successful and less easy to be with in social encounters.
15. Unwitting prejudice allows and legitimates negativity, unfairness and low expectations towards people with disfigurements in the media and many other settings. There is  some evidence that unfamiliarity is at the heart of such prejudice. When people have undertaken the same public attitude test after exposure to the Changing Faces website, the extent of the bias was somewhat reduced.
16. The negative beliefs include but are not limited to low expectations in terms of intelligence, ambitions, intimate relationships and social skills and presumed depression and anxiety. There also appears to be a widespread but erroneous belief that employing someone with a disfigurement, especially in a customer- or client-facing role will make people feel uncomfortable and therefore be bad for business. Research shows that people who have a disfigurement and good social skills are viewed more positively than people with good social skills whose appearance is in the normal range.[4]

Current provision and its limitations

17. The Equality Act 2010 protects people who have a ‘severe disfigurement’ from discrimination. It specifically states that ‘an impairment which consists of a severe disfigurement is to be treated as having a substantial adverse effect on the ability of the person concerned to carry out normal day-to-day activities.’ Its main scope is direct discrimination and harassment.
18. Within the Act there is little guidance on what constitutes a ‘severe’ disfigurement, neither the severe nor disfigurement. The guidance accompanying the Act states:

Examples of disfigurements include scars, birthmarks, limb or postural deformation (including restricted bodily development), or diseases of the skin. Assessing severity will be mainly a matter of the degree of the disfigurement. However, it may be necessary to take account of where the disfigurement in question is (e.g. on the back as opposed to the face).

19. In practice, this is very limited advice for what is a very complicated issue: ‘disfigurement’ as a collective word referring to the effect that any trauma or medical condition or their treatment can have on the appearance of a face or body, making it look different, unusual, scarred or asymmetrical, or causing it not to function normally. It covers all the different causes of unusual-looking faces and bodies: birthmarks, clefts and cranio-facial syndromes, scarring from accidents, burns, violence, self-harm and warfare, cancer and its treatment, eye or skin conditions, and facial paralysis. For example, research has revealed painful discrimination against small children who have a squint.[5]
20. The term “severe disfigurement” inaccurately creates a need to quantify the disfigurement, and wrongly puts single emphasis on the physical aspects of a disfigurement. There is evidence that objective severity of disfigurement is not what determines whether, and the extent to which, if someone is being discriminated against and to what extent. Research5 shows that a disfigurement does not have to be large in its size or scale to be psychologically and/or socially distressing.
21. All disfigurements, however ‘small’ in size (eg. a cleft lip/palate) can be ‘significant’ in terms of impact, especially those in the ‘communication triangle’ (between the eyes and chin) where others focus their gaze. Furthermore, as previously mentioned, it is the bias and response of the general public that influence the treatment of individuals with a disfigurement rather than the objective size or shape of the disfigurement. This creates a huge challenge to employers, schools and universities and service providers to ensure fair and equal treatment.
22. It should be noted however that the Equality and Human Rights Commission guidance to the Act explains that a person who is seen to have a severe or significant disfigurement has the same rights in employment, and equality of opportunity as people who do not have disfigurements. This was included after discussions with Changing Faces in 2009-10 in preparation for enactment of the bill. However it is not reflected in the Act itself.
23. There is also currently no requirement in potential cases to demonstrate the substantial adverse effects on one’s ability to carry out normal day-to-day activities. The degree and the positioning of the disfigurement may be taken into account, which indeed affect the way a disfigurement is perceived. However, the effect it has on one’s daily life is not taken into account when considering whether a person with a disfigurement is ‘disabled.’
24. This, again, wrongly puts emphasis on the physical aspects of a disfigurement and what reasonable adjustment is required leaving the decision of whether a disfigurement is disabling enough to qualify as a disability to tribunals and/or medical professionals, who consider this question in mere isolation.
25. Though often disfigurements to the face, body or hands do not cause functional impairments, structural negative prejudices towards people with disfigurements can significantly adversely affect their opportunities in all aspects of life. In school for example the vast majority of bullying targets appearance6.

Consultation Response

Are the current enforcement mechanisms available to private individuals accessible and effective for people with disfigurement, employers and providers of goods and services? (Q.10)

26. To our knowledge and that of Charley Russell Speechlys LLP, there have been no cases relating to disfigurement brought under the Equality Act 2010, and in fact there were very few under the previous legislation, the DDA 1995 (Riam Dean v Abercrombie & Fitch, Jenkins v Legoland Windsor Park Ltd being notable exceptions).
27. This lack of legal action strongly suggests that people with disfigurements who have experienced discrimination and/or harassment do not know how or where to bring cases forward or cannot be confident that this will result in protection of their rights.
28. The EHRC can take on a limited number of test cases providing they are aligned with their strategic priorities. According to the website, ‘the Commission is interested in hearing from solicitors, advisers, NGOs and others who are bringing cases that might be of strategic importance.’
29. In August 2015 Changing Faces conducted a survey to establish what knowledge and experience our supporters had of the protections offered to people with disfigurements by the Equality Act. A total of 159 valid and completed surveys were received producing the following key findings:

• Only a quarter of respondents knew that the law protects someone with a disfigurement from discrimination
• Only a third of respondents said they had not experienced discrimination because of disfigurement in the last five years
• Two thirds of respondents said they did not know which authority to turn to if they experienced discrimination
• Just two respondents (1.5%) knew that the Equality and Human Rights Commission are the key agency responsible for tackling such discrimination.

Examples of poor treatment

30. Changing Faces has collected many examples of discrimination and harassment since 2010 including the following:

      A woman with scarring/burns was bullied at work: she was called names, teased and ostracised. Despite reporting it to both her line manager and HR, the matter was not dealt with satisfactorily leaving her feeling she had no right to feel safe or happy at work and eventually being signed off work with stress for over a year. She contacted Changing Faces to find out if she had any rights at all at work, and whether her rights were protected by the Equality Act. She also asked us: ‘How is severe disfigurement defined? When is it severe and when is it not?’

      A child born with a cranio-facial condition was called ‘scarface’, and ‘Paula [not her real name] with the face’ at school and another child even said that they would kill themselves if they had to look at her. The mother contacted the charity seeking support.

      A young qualified experienced nursery nurse born with a cranio-facial condition had been looking for work for more than a year. Whilst being invited to many interviews, she has not been successful in getting employment. Once she was invited to  interview but upon arrival was told that the criteria had changed and she no longer met them. She believes that she is being discriminated against but has no proof. She would not know where to find help even if she did.

      A man in his 40s with a congenital syndrome including a facial palsy was recently refused service at a pub on the grounds of being drunk although he was not. The customer did not know his rights or who to turn to. A man with acne was regularly teased by his colleagues. He complained to his manager about the constant bullying and his manager told him to ignore the teasing. The teasing continued and the man approached his manager again. The manager was sympathetic but explained there was nothing he could really do as they were not really doing any harm. He contacted the charity unaware that he could seek legal protection.

31. It should be noted that it is not simply the individuals themselves who are unfamiliar with the legislation. We recently conducted a survey of 12 randomly selected police forces across Britain to establish how they responded to a claim of disfigurement discrimination and what advice they would give the victim. Only Wiltshire Police referred them to the EHRC and just three suggested Citizens Advice Bureaux. (NB: on the Citizen’s Advice UK website, it states that ‘severe disfigurement’ is automatically treated as a disability under the Equality Act but there is no absolute definition of ‘severe’).

Could other regulatory bodies with a role in the effective implementation of the Equality Act 2010, such as inspectorates or ombudsmen play a more significant part? (Q.9)

32. In addition to individuals’ experiences of discrimination and harassment, there continues to be poor handling of disfigurement complaints by some regulatory bodies. Below are some examples of journalists, broadcasters and producers perpetuating negative stereotypes. In some cases the regulatory bodies in charge have deemed the material acceptable. We believe that as public bodies that are there to work for, and demonstrate progress towards ‘elimination of discrimination, harassment and victimisation, advancement of equality of opportunity and fostering of good relations’, they should show more consideration for the regressive impact on such material on societal attitudes and in turn on people who live with disfiguring conditions:

      Quentin Letts: ‘Self-appointed busybodies’. In June 2015, the Daily Mail published a review of the new West End production of The Elephant Man, in which critic Quentin Letts used a number of offensive and pejorative terms to describe the ‘Elephant Man’s’ disfigurement. Changing Faces emailed Mr Letts to draw his attention to their guidelines for journalists. Mr Letts replied: ‘Linguistic political correctness by self-appointed busybodies is … more offensive than any adjective I have used.’

      Daily Express: ‘The World’s Worst Mugshots. In April 2015, the Daily Express published an online gallery of almost forty people, described as ‘the world’s worst mugshots’. Many of the people depicted had medical conditions, or marks or scars that were affecting their appearance. Changing Faces complained to the Daily Express and to the new regulator, the Independent Press Standards Organisation. After four months, the Express issued an apology for the gallery which they accepted was ‘tasteless’ and ‘offensive’. The IPSO claim to exist to serve the public by holding publications to account for their actions. It is our belief that they could play an important part in encouraging the press to challenge social taboos and ensure positive portrayals of disfigurement are promoted.

      Powwownow: ‘Avoid the Horror’. In January 2015, telecoms company Powwownow launched a campaign called ‘Avoid the Horror’, encouraging people to ‘avoid the horror’ of commuting by using their conference call system. One of the advertisements depicted passengers on a tube train wearing what appeared to be burns compression masks. Changing Faces complained to Powwownow and the Advertising Standards Authority. Powwownow initially withdrew the advertisement but then reinstated it. The ASA ruled that the advertisement was not in breach of its taste and decency guidelines, despite a number of complaints.

      Moshi Monsters. In 2013, Changing Faces complained to Mind Candy, the company behind the online children’s game phenomenon, ‘Moshi Monsters’, about the ‘villains’ in the game being given names such as ‘Freak Face’. The charity was concerned that these could legitimise bullying and name-calling amongst children. Changing Faces asked Mind Candy on several occasions to meet and to discuss the issue. Mind Candy never responded, even after several MPs signed an Early Day Motion criticising the company. The Video Standards Council concentrates only on setting age restrictions and does not regulate material that might perpetuate hate or violence against groups of people. It states: ‘we will supply detailed content information (the amount and type of violence, bad language, sex etc in a game), so that you can be absolutely certain you are making the correct purchasing decision.’ More attempt needs to be made to regulate content and promote positive attitudes towards disfigurement, especially in children.

      Betty Productions. Betty is an independent television production company which often works for Channel 4 and BBC Three. Over recent years they have produced a number of programmes with pejorative and unhelpful titles, including ‘The Undateables’, ‘The Beauty and the Beast’, and ‘The Ugly Face of Disability Hate Crime’. We believe that Betty are well intentioned, but lacking understanding of the impact that seemingly "flippant" or "harmless" titles can have in legitimising prejudice, name calling and bullying for those people who might be seen as ‘undateable’, ‘beasts’ or ‘ugly’. This is something that Ofcom should be able to step in and assist with.

      The Bullying Interventions Group’s biennial survey asked children about the reasons they thought they were bullied. The responses reveal that children with a different appearance are likely to especially vulnerable. This supports our client data that 90% of the children who contact the charity have been bullied.

How effective has the Public Sector Equality Duty (PSED) been in practice? (Q.5)

33. By way of context, it should be noted that since the Coalition Government made Equality Duty reporting voluntary, there has been a significant decrease in awareness and consideration of the issue. It can only be surmised that there has been a knock on effect on the amount of reporting taking place.

The effectiveness of the Public Sector Equality Duty regarding equality at school for children with disfiguring conditions, injuries, illnesses etc requires their experiences of bullying that targets appearance to be properly monitored over time. This requires data collection to be a statutory requirement, standardised across all schools.

34. The PSED could and should be the means for changing the way each new cohort of children understands and reacts to people whose appearance is disfigured. It should be a force for good but without accurate, standardised data collection across time, its usefulness cannot  be measured. It is recommended that real expertise in this field can be found from public health professionals who have great experience in collecting and understanding all manner of data concerning the population as a whole.
35. Public sector organisations should collect demographic monitoring data to enable them to assess progress against targets. However, they may struggle with getting people to disclose disabilities. This could be partly because there is rarely a definition of what this includes. 

Summary

36. We believe that it is clear that the current definition and provision for people with disfigurements is inadequate for the following reasons:

      Lack of clarity around the definition of disfigurement

      Lack of clarity around the definition of ‘severe’

      The current focus on reasonable adjustment and indirect discrimination

      Individuals and agencies’ lack of knowledge about  how the Equality Act protects their rights

      The confusion caused by placing disfigurement within the disability protected characteristic; people with disfigurements often do not have functional impairments but are disabled by other people’s negative associations

      People who have been discriminated against not reporting cases coming forward means the legislation cannot be tested effectively

      Ineffective implementation by inspectorate and ombudsman 

37. This is clearly inadequate leading to many people with disfigurements in the UK being treated unfairly and unequally.

Recommendations

38. Changing Faces proposes the following::

a)      ‘severe disfigurement’ should be separated from disability and a new protected characteristic of ‘facial disfigurement’ should be created. This would enable individuals to seek legal protection like other characteristics where immediate judgements are made about others such as age, race and gender based on appearance.

b)      the Equalities and Human Rights Commission should produce an annual review paper on specific activity on disfigurement including detailed statistics on numbers of enquiries etc.

c)      funding to be allocated to develop and deliver a multi-agency awareness campaign to inform people of their rights under the Equality Act.

Changing Faces would be pleased to present oral evidence should this be helpful to the Select Committee. A number of champions and former clients, all with lived experience of disfigurement, would also be willing to contribute to the Inquiry.

ANNEX: What is Changing Faces doing about the problem?

Changing Faces exists because we don’t believe people with disfigurements are fairly treated nor provided with effective support in the UK today. We believe that it doesn’t have to be like this: with the right support and a fairer society, everyone could live happy fulfilling lives.

We aim to bring about change: empowering confidence in children, young people and adults, advocating for better health care and tackling prejudice and discrimination wherever we find it. We want an inclusive and caring society in which everyone can fulfil their hopes and dreams.

Changing Faces’ vision is a world in which people with disfigurements are confident, valued and included as citizens, customers, students and employees, and receive comprehensive health and social care that fully addresses their psychological, social and practical needs.

Our mission is to demonstrate what help should be provided, to argue for its widespread availability, to raise awareness of disfigurement prejudice and to campaign for a fair society.

Underpinned by users’ views, positive role models and academic evidence, we aim to tackle the prevailing unfairness from both angles, helping individuals ‘Changing Lives’ and challenging society ‘Changing Minds’ at both national and regional levels.

CHANGING LIVES aims to improve the confidence and independence of people of all ages with conditions that affect their appearance (and their families) by:

• offering practical and emotional support and advice one-to-one, in groups and online
• offering advice and training for professionals who help people with disfiguring conditions
• training Changing Faces Practitioners to work in the NHS to deliver our package of help
• advocating for better health and social services for people with disfigurements

CHANGING MINDS aims to promote fair treatment and equal opportunities for all irrespective of their appearance by

• creatively raising public awareness of the stigma around disfigurements
• promoting examples of people leading successful, fulfilled lives with unusual looks
• working with the media to turn around the unfamiliarity and stigma head on
• actively seeking to counter public examples of facial prejudice, ridicule and stigma
• influencing the education sector and employers to create inclusive environments
• lobbying at all levels for sound anti-discrimination protection and enforcement.

4 September 2015