It is the end of Face Equality Week – this is an annual initiative by Face Equality International – for which I am an ambassador. The theme is Face Equality is a Human Right – and they want to see this recognised formally so we have avenues for support and recourse.They have released a report which explores the impact of discrimination, micro aggressions and abuse on people with facial differences. This is important research and it validates our experiences – and it is good to see Australian organisation’s including thr Australian Human Rights Commissokn and the esafety Commissioner share it. Check out their other resources here.
(Image: selfie of a woman with a red face, short dark curly hair tied back, wearing a light purple and white floral dress, and sparkly purple owl brooch. She’s smiling.)
I’m a writer, speaker and appearance activist. I identify as a disabled woman with a facial difference. These are integral parts of my identity – that I am now very open about. Years ago I denied my facial difference – and certainly didn’t see myself as disabled. It’s not like I pretended it didn’t exist, I just didn’t see it as part of my identity or as anything to be proud about.
I have a rare severe skin condition called Ichthyosis – the type of Ichthyosis I have is Netherton’s Syndrome. I was born with it, and there’s no cure. It is also classed as a chronic illness. I shed a lot of skin, I get itchy, am susceptible to infections and experience chronic pain most days. While my face is the reddest part of my body, it’s my legs that are often the most painful.
The physical symptoms of Ichthyosis – especially the pain – can be really hard at times.
But it’s the comments, stares, taunts, laughs and discrimination that are the hardest to manage.
Last year, an interviewer asked me what’s the difference between appearance diversity and disability. I was thrilled, as it’s a topic I have wanted to explore in my writing for a while. In simple terms – I experience disabling barriers due to my facial difference. These are mostly discrimination and microaggressions.
I discovered the social model of disability around 10 years ago – it means society puts up disabling barriers that can be removed, and that our bodies are not broken and not to blame for encountering disabling barriers.
A few years prior I mentored young people with chronic illnesses and I also started writing and presenting for disability media. It was through reading and meeting disabled and chronically ill people that prompted me to explore my own identity. I realised that even though we had different diagnoses, the barriers we encountered were very similar. We all had lots of time off school and work to attend hospital as outpatients and inpatients. We all experienced discrimination.
I get judged before I open my mouth to speak. People stop what they are doing to look at me, whispering and giggling. I am asked intrusive questions about my medical history, and I am prayed for and preyed upon by snake oil sales people.
My photo has been misused and ridiculed online – shared on forums, and I’ve even had hate art made and distributed on Twitter. I’ve been discriminated against by more taxi drivers than I can remember – they’ve been scared of my face. I’ve also been told that they are allowed to refuse my fare if my face makes them feel scared. This devastates me.
When I’ve reported the online abuse to the social media platforms police and the eSafety Commissioner here in Australia, very little can be done. There doesn’t seem to be any laws against disability hate crimes – which is what appearance based online abuse is.
Perhaps the moderators of the social media platforms haven’t had lived experience of disability and facial difference to recognise it for what it is.
When I’ve reported taxi driver discrimination to taxi companies, the Taxi Commission and the Human Rights Commission, very little can be done. The drivers aren’t fined, no further training is delivered, the taxi company isn’t fined, and there is no compensation to me.
I don’t know what more I have to do – I’ve done media around this, delivered training, reported it officially and on social media – yet it still happens.
There are never any consequences for their discrimination.
I feel that it’s still accepted to mock and mimic people with facial differences. We see it in film and TV – with characters with facial differences being portrayed as villains. Just as the way disability is often portrayed by non-disabled actors, facial difference is portrayed by actors with beauty privilege.
And often those of us with facial differences are seen to be overreacting or imagining things when we speak about or report microaggressions and discrimination experienced; or raise the issue of facial difference mimicry in film.
Attending the Appearance Matters conference and meeting James Partridge and discovering the work of Changing Faces in 2012, and then later Face Equality International was also pivotal. I finally had a term to describe my red face. A facial difference. The work James and his team had done was also life changing.
Many people with ichthyosis (especially less severe types) don’t identify as being disabled.
Yet the mental health impacts are high, and mental illness is classed as a disability.
This is ok – people can identify how they wish. But I also think it’s important to acknowledge the human rights and disability activists who have come before us, and to recognise that people with facial differences should be protected by human rights policies and laws.
Face Equality is a human right. And so discrimination against people with facial differences needs to be supported by a human rights framework. We need to be able to report discrimination and hate speech and it be taken seriously – worldwide.
This is also an excellent video from Children’s CranioFacial Association in America.