Global non-profit Face Equality International is fighting hard to ensure that facial differences and other disfigurements are appropriately recognized and protected as a sub-category of disability rather than being dismissed, as is all too often the case, as less important primarily superficial and cosmetic concerns.
Over 100 million people worldwide live with a noticeable mark, scar or condition that affects their facial appearance either from birth or acquired later in life. Typical conditions that can cause FD include clefts, psoriasis or injuries arising from accidents or trauma such as automobile accidents, burns and acid attacks.
Within a legal paradigm, both the Americans With Disabilities Act in the U.S. and the Equality Act in the U.K. contain protections for individuals with severe facial disfigurement but a dearth of case law and successful prosecutions mean that guidelines are somewhat woolly and outright discrimination based solely on a facial difference is notoriously tricky to prove.
Part of the medicolegal complexity, in relation to the workplace for example, stems from the fact that it is hard to define how a facial disfigurement might substantially impact activities of daily life. Such deliberations are a precursor to considerations around reasonable workplace accommodations and their accompanying framework of legal protections.
Nonetheless, viscerally negative social attitudes and discrimination are just as real, if not more so, for an individual with a facial difference as they are for any segment of the disability community. In short, the man-made societal barriers associated with the social model of disability apply absolutely and acutely to those with a facial difference and yet they often lack the necessary medical categorization to ensure that their rights are appropriately legally enshrined through the possession of incontestably protected characteristics.
Mirrors of society
Back in May, Face Equality International, an alliance of 36 worldwide non-profits that campaigns to promote face equality presided over Face Equality Week and its accompanying #WeWillNotHide campaign. Though discrimination against those with facial differences permeates multiple sectors of society – the campaign organizers opted to target two critical areas that routinely empower negative stereotyping and discrimination. Namely, social media alongside Hollywood and the entertainment industry.
In relation to the former, the past few years have witnessed horrific, virtually unbelievable instances of platforms such as TikTok and Facebook censoring or removing posts from burns survivors sharing their stories – with AI moderating tools deeming the posts as depicting graphic or violent content.
Human decision-makers do not appear to be doing much better either with Hollywood coming under fire from the disability community over the last few years for excluding disabled talent or offering up cliched depictions of disability on the silver screen that are redolent of inspiration porn.
When it comes to the FD community, the common association of disfigurement with evil and villainy is a particular pain point with examples ranging from Freddy Krueger, The Joker and too many classic Bond villains to mention.
Ironically, during Face Equality Week itself, The Mother starring Jennifer Lopez and Joseph Fiennes was released on Netflix with Fiennes’ central bad guy character disappointingly, but hardly unsurprisingly, depicted with an eye patch and burns scars to underline his depravity.
To hide or not to hide
Sora Kasuga is a New York-based face equality activist who was born with veinous and lymphatic malformations affecting the left side of her face. Kasuga works as a professionally trained circus artist, performer and entertainment producer and admits in an interview that the public-facing nature of her much-loved profession has forced her into confronting some awkward situations and difficult choices.
“I know that I’ve been dropped from contracts and lost work because of my face,” says Kasuga.
“Even though they recognized that I had talent, one employer was afraid of what would happen after our show when we would do a meet-and-greet with the audience and they would have the opportunity to take photos with us. I’ve been asked to cover my face while performing and wear masks. I understand that the entertainment industry is very looks-based. However, the goal is to widen that lens and redefine beauty so that it is inclusive of all humans.”
Phyllida Swift Face Equality International’s CEO (pictured top photo right) agrees that the instinct to want to hide oneself away can feel intuitive both in terms of self-preservation and giving in to what society demands of those with a facial difference.
“Being forcibly hidden away or feeling the need to hide as a coping mechanism is a great injustice that I’m incredibly passionate about,” says Swift, who herself lives with an acquired facial difference as a result of scarring sustained in an automobile accident in 2015.
“On top of this, people are forcibly hidden by a lack of representation in the advertising industry which was where this notion of “we will not hide” comes from. We need to have this act of defiance to work together with activists who are willing to be more visible and help give a voice to future generations because people with facial differences deserve to be seen and heard on their own terms.”
Those terms are certainly important. While Face Equality International is desperate to bring disfigurement into the disability-inclusion mainstream, hence the organization’s recognition by the United Nations Convention on the Rights of Persons with Disabilities, Swift is equally keen not to dilute the community’s unique identity as a disability collective.
“We are a community within ourselves much like the Deaf community where there is a very unique human experience. Unless you’ve had that personal experience, or know somebody who has lived and breathed it, it’s just very hard to understand the reality.,” Swift says.
Though the full impact of that reality may only be appreciated by those who see that same distinctive face staring back at them in the mirror day in and day out – wider society shouldn’t necessarily need to know precisely how that feels. Instead, a simple awareness that genuine discrimination exists that is all too real but built on the flimsiest and most superficial of premises would represent a sound enough start.
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