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Adam Pearson: Face Equality Week

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Adam Pearson: Face Equality Week

The Author

Adam Pearson

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This week, we are dedicating a series of blogs to Face Equality Week. The first comes from Adam Pearson, an award-winning disability rights campaigner, actor, presenter and speaker. He has a genetic condition called neurofibromatosis (NF1), which causes benign tumours to grow along the nerves.

Adam Pearson: Face Equality Week

So here we are, Face Equality Week 2020, though this one feels different to previous years. If I’d have been writing this article merely a few months ago, under normal circumstances this article would be very different in tone, style and conclusion. Though at this unique moment in human history I wanted to say something meaningful, something helpful.

Allow me to introduce myself, or for those of you who know me reintroduce myself. My name is Adam Pearson, I am a TV Presenter, Actor and Campaigner (and Celebrity Mastermind Champion). I, like over 1 million people in the UK, have a facial disfigurement / visible difference. Mine is caused by a genetic condition called Type 1 Neurofibromatosis (NF1). This condition is characterised by the growth on non-cancerous tumours, called Fibromas, on nerve endings. In the same way that cables such as iPhone chargers are wrapped in plastic, your nerves are wrapped in cells called Schwann Cells. It’s the over-multiplication of these cells that cause said tumours. The condition itself has a very broad spectrum, with effects ranging from mild to extreme, I am at the later end of the spectrum. I often refer to myself (within very selected circles) as the Spinal Tap of NF1 – and if you got that reference congratulations, you are officially cool.

My experience of living with a facial disfigurement has been filled with ups and downs, it has shaped who I am as a personal and dare I say it has made me a better person. When you boil it down, it has been one of the main driving forces in my career, after being bullied horrendously for all 5 years of secondary school I naturally fell into advocacy as an adult.

As a disclaimer I should point out that I handled being bullied terribly, at the age of 11 I guess that my emotional intelligence and social fluidity wasn’t then what it is now. I was also, be it for better or for worse, a lot smarter than the people who were calling me names and giving me grief, as a result I was able to outwit, and out-insult them at every turn, which at the time seemed both justified and hilarious but with the benefit of hindsight I now know better. Rather than defusing the situation, I was simply exacerbating it. I’m not into having regrets, though I regard secondary school, in all its dirty glory, as one of those regrets. I often say that, regardless of your position on his work, Darwin’s theory exists in perfect motion in school playgrounds across the earth.

Fast forward 20 years (God I’m old) the situation is very different, I have a voice, I have a profile, I get to travel the world making movies and documentaries, I get to talk to people about things that I am passionate about and get to hear what they, in turn are passionate about. However this whole media career was never the plan, moreover it is a very fortunate by-product of being very good at advocacy, about learning to recognise inequality (and there is a difference between things being unequal and thing being unfair) and being able to communicate that with grace, humility and humour. Even over the past year I have learned that not everything is a battle and that not every hill is one worth dying on.

Adam Pearson

I have always been incredibly grateful to have had an amazing support network, be it my parent, my friends, media professionals who were willing to take a chance on me, as an adult I’ve never really struggled to find my place in this crazy world – I am one of the lucky ones. However, I am also aware that there are people out there with a facial disfigurement / visible difference who haven’t had the same support I have.  People who live there live in constant fear of judgement and ridicule, for whom the outside world is a scary and unstable place, people for whom the idea of self-love seems so far out of reach.

If that’s you, trust me when I tell you it gets better, things get easier. I can’t wave a magic wand and make it all go away, but what I can do is be there, if your confidence is low, borrow mine, rest assured that there are people out there that love you for who you are right now, they aren’t looking back nostalgically at an older version of you they preferred. Nor are they looking to some future version of you that has their s**t together.  The person you are right now is plenty good enough, and if people have an issue with that, that is their burden to bear, not yours.

This is normally the point in one of these articles with the writer hops up on their soapbox and judges the world for its transgressions against a particular minority group, siting their own life experiences blow by brutal blow. Currently though that honestly doesn’t feel like the right tack, here in May 2020.

Right now, in the midst of COVID-19, the world has never been more equal.

Right now, for one reason or another, everyone is afraid to leave their house.

Right now, for one reason or another, everyone is staring at each other with fear, loathing and suspicion.

Right now, we all wish we could see our friends, hug them and know that, come what may, we are loved, honoured and respected just as we are.

Once this COVID-19 situation passes, that day will happen, those fears will fade, those anxieties lift and those friendship rekindle.  However, for many of the 1 million people who are affected by facial disfigurement / visible difference, the emotions may be conflicting. For them lockdown has been a welcome break from the cruel day to day life they experience, for many a return to “reality” is a return to a world that is rife with hostility, mockery and anxiety. Therefore, if you take anything away from Face Equality Week 2020, if there is one word I could burn into our collective consciousness, it would be empathy.

The very uncertainty we are all experiencing right now, that’s remarkably similar to the uncertainty I experienced at school. That feeling of being isolated, alone, not know where I fit within this ever changing world around me. So let me encourage you, no matter who you are, visible difference or not, when this is all over and we slowly go back to our lives, let empathy be at the heart of what you do.  If you see someone who looks different, smile, say hello, ask them about their stories, be united by our commonalities rather than stand divided by our differences.

Have a great Face Equality Week 2020 and thank for taking the time to read this article, I hope it helped.

Adam

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Emotion, Lived Experience and Caring in AboutFace

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lived experience and caring

Emotion, Lived Experience and Caring in AboutFace

The Author

Victoria Hoyle

The Thursday installment of our Face Equality Week blogs comes from the project’s Research Associate, Victoria Hoyle.

Emotion, Lived Experience and Caring in AboutFace

AboutFace takes the position that research is not solely an intellectual activity. It is also emotional and sensory, impacting the body and the mind, and generating physical responses and feelings that become part of the process of creating new knowledge. This is central to our understanding of what it means to engage with the personal and traumatic experiences of individuals, including face transplant recipients and their families, donor families, and people living with facial difference.  It is also an integral part of working with professional communities – of surgeons, nurses, psychologists, ethicists and extended medical teams – who, despite the apparently scientific and objective basis of their expertise, also have complex emotional entanglements in their work. Reflection on these entanglements, as well as personal emotional discovery and empathy shape our research practice, in what has been described as ‘affective scholarship’.

Recognising the value of lived experience as a form of expertise is central to this approach. In particular, acknowledging those whose experiences have previously been marginalised or voices silenced in medical settings.  For example, while there is a voluminous and expanding literature of on the functional, surgical and aesthetic outcomes of facial transplantation, there has been no attempt to understand the experience of the procedure from the point of view of the recipient. Very few medical teams have worked with people with significant facial difference, some of whom may be potential candidates for transplant, to explore the surgery’s implications, meanings and challenges. Questions about appropriateness, ethics, identity, and what success looks like have happened within a scientific discourse.

Our aim is to change that, by focusing on what facial difference and face transplant mean to those directly involved and impacted.  As Linda Finlay describes it, we want to understand ‘the world as directly and subjectively experienced in everyday life, as distinguished from the objective physical world of the sciences’ (Finlay, 2009). Speaking to recipients and potential recipients, and their families, as well as donor families and wider facial difference communities is critical to this.  Rather than thinking about validated measures of quality of life or psychological wellbeing, which turn individuals into numbers and data for analysis, our aim is to build a rich, embodied description of face transplants as a human phenomenon.

AboutFace is doing this on two levels. Firstly, by working with our Lived Experience Advisory Panel (LEAP), which is made up of individuals with facial difference who are specialists in areas such as research practice, evaluation, patient participation and involvement, disability rights and advocacy. This group helps to shape the direction and priorities of the research, to ensure that the interests, needs and concerns of people with facial difference are given equal weight to those of other stakeholders as the project develops.

Secondly, by speaking to patients and families directly as part of an oral history process. This process focuses on collecting memories, opinions, thoughts and feelings, outside of existing medical or psychological frameworks for assessing people’s experiences. Our aim is to listen, reflect and consider individual narratives, respecting each person’s point of view as an autonomous, sense-making individual. Over the course of the project we intend to speak to over 100 people with lived experience of facial difference in this way, alongside surgeons, medical teams and others involved in the development of face transplantation.

As a researcher I have experienced the multiple benefits of centralising emotion and lived experience in this way. During the MIRRA project (Memory-Identity-Rights in Records-Access, UCL, 2017-2019) I worked with adults who had been in care as children, to explore their personal histories through the records that had been created about them by social workers, foster parents, the courts and others. The ultimate aim of the project was to develop a new framework for access to care records, to be used by social workers, information managers and care providers. This could have been achieved by desk research on best practice; by speaking to practitioners about structural barriers and challenges, and by designing routes for policy change within organisations. However, by involving care leavers as both co-researchers and participants the project found that the issues and challenges were not solely, or even mostly, procedural or structural.  They arose from the deeply personal resonances that records had for care-experienced people, who used them to fill gaps in their memories and answer critical questions about their early lives (Shepherd et al, 2020). It was the misalignment between individual’s emotional needs and institutions’ bureaucratic systems that led to poor, hurtful access to records experiences.

As a result we developed a framework that focused on love and respect rather than on retention schedules and data protection rules. The former were critical to fulfilling the needs of care-experienced people, for whom the mundane records of local authorities were the equivalent of photo albums and family stories.  We concluded that processes should arise from a fundamental appreciation of emotion and trauma, in a way that acknowledged the individual as a person rather than as the ‘subject’ of ‘data’.  This is what AboutFace also hopes to achieve: an understanding of the global history of face transplants from the multiple perspectives of people rather than of systems, data or theories.  This understanding can then be put to work in discussions about the appropriateness, success and value of transplantation.

Max van Manen (1990) describes this kind of lived experience-centred research as a ‘caring act’, which stems from a desire to deeply understand and do right.  He cites Goethe’s Elective Affinities, linking the pursuit of knowledge with the necessity of caring for the object of that knowledge:

‘One learns to know only what one loves, and the fuller the knowledge is to be, the more powerful and vivid must be the love…’

Which brings us back to the importance and potential of emotional and embodied research.  Although we may not categorise our feelings about our co-researchers, colleagues or participants as ‘love’ in the narrow sense, the broader perspective of the concept, grounded in notions of equality, respect and caring, is essential to the AboutFace research design.

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