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The challenges of living with an unusual appearance: What do we know, why don’t we know more and where do we go from here?

May 19, 2020 by Fay

The challenges of living with an unusual appearance: What do we know, why don’t we know more and where do we go from here?

The Author

Nicola Rumsey

Nicola Rumsey

Our second Face Equality Week blog is on the subject of living with an unusual appearance, and is written by Nichola Rumsey. Nichola is Emerita Professor of Appearance Psychology, University of the West of England, where she founded the Centre for Appearance Research in 1992 and was its Co-Director until 2018. Nichola was a member of the RCS Expert Groups on Face Transplantation from 2003-2004 and 2006-7. She was appointed OBE in 2016 for services to people with disfigurement. Nichola now works as a Consultant Research Psychologist and is developing training and clinical aids designed to improve standards of patient care in the cosmetic and reconstructive plastic surgery sectors.

The challenges of living with an unusual appearance: What do we know, why don’t we know more and where do we go from here?

The AboutFace project has given me the opportunity to reflect on the debates about face transplant that ranged from 2002-2006 in the UK and in doing so to reflect on what we currently know (and don’t know) about the challenges of life with an appearance that is different from the norm.

We live in a society that attaches considerable importance to an attractive physical appearance.  Social media and the internet, together with marketing and advertising funded by the ever-expanding cosmetics industry, have conspired to produce and then fuel unprecedented levels of dissatisfaction, worry and anxiety about “looks” in most segments of the population (for more, see Nuffield Council on Bioethics Report, 2017).

In our daily lives, we are bombarded by images of people exemplifying current appearance ideals, often accompanied by explicit or implicit messages that suggest that we should be striving to match up to these ideals ourselves. To a greater or lesser degree, we take on board these messages and the resulting belief that changes to our appearance will enhance our relationships and social lives, maybe even our achievements at work.  For many people, the value placed on outward appearance is becoming disproportionately large compared with other aspects of self-esteem and sense of self-worth.

In this social context, living with an appearance that is noticeably different to current ideals is widely acknowledged to be challenging.  Visible differences result from a diverse range of causes.  They can be permanent, temporary, progressive or fluctuating and yet, despite this diversity, the psychological and social issues that people experience are similar.  The emotional impacts can be extensive, encompassing anxiety – particularly in social situations, shame and embarrassment, negative body image, self-consciousness and a lack of self-confidence.  These impacts can also influence behaviour.  For example, the experience of negative emotions, coupled perhaps with unwanted attention or questioning from others, can lead to the avoidance of potentially anxiety provoking social situations – such as meeting new people, forming new friendships or embarking on an intimate relationship.

Despite similarities in the experiences of many people living with a visible difference, there are also striking variations in their levels of adjustment and wellbeing. Some people experience these challenges as no more than a minor inconvenience, whereas for others, there are devastating effects on psychological wellbeing and daily life. Interestingly (and often in contrast to the beliefs of healthcare professionals and the lay public), the extent, severity and cause of a visible difference are not good predictors of adjustment.

A very noticeable disfigurement is not necessarily an insurmountable impediment to a good quality of life. Neither are gender, age, or socioeconomic background good predictors of adjustment. Instead, research has demonstrated that psychosocial factors and processes play major roles in a person’s level of resilience or distress. The key role played in adjustment by a person’s outlook on life (this varies from optimism – the tendency to look on the bright side and make the most of things, to pessimism – a focus on the down sides) is now well established.  In addition, the extent to which a person’s feelings about his or her appearance contribute to the person’s sense of self-worth is important.

Think of someone’s self-esteem as a pie chart.  If the person has internalised the messages from advertisers, social media and their peers about the importance of appearance in many aspects of life, then their pie chart is more likely to be dominated by their feelings about their looks. They worry about what they “should” look like and fear that they will judged negatively by others because they are failing to match up to current standards. These people are more likely to experience distress and to judge their quality of life negatively.  If, on the other hand, the person has populated their self-esteem pie chart with lots of different elements (for example, their sense of humour; their ability at sport etc), with appearance occupying only a small segment, then that person is more likely to be resilient to the challenges of an unusual appearance (and also to many other hurdles they may encounter in life).

So, we have made some progress in understanding individual differences in adjustment to visible difference, but why don’t we know more?  The short answer is that these differences result from the combination of a myriad factors and processes  On the upside, this complexity makes us all unique. The bad news (for researchers at least) is that progress in understanding the detail is slow. Rather like trying to complete an enormous jigsaw made up of thousands of tiny pieces, some small clusters of the overall picture are now clear, but we are still a long way from completing the tantalising picture on the outside of the jigsaw box.

Researchers have very different ideas about the key variables in adjustment and use these different ideas to drive their own agendas for research. Many different methodologies and measures are used making it impossible to combine data sets from different studies. As a result, we are continuing to populate new, small areas of the jigsaw but less progress is being made with the inter-connections.  Researchers from The Centre for Appearance Research at UWE in Bristol are working hard to produce a framework of adjustment to appearance and a set of key measures, proposing these as a common currency amongst researchers in the field, but we are still in the foothills of persuading research communities across the world to join this effort.

The good news from a psychological point of view is that many of the factors that have already been identified as contributing to the wellbeing of people with visible differences are amenable to change.  For example, people predisposed to a pessimistic outlook on life can be helped to become more optimistic. The challenge is how to make effective interventions available at scale – both within the health services and also as open access resources online. Training packages designed to help health professionals and community workers to support people with visible differences have been developed, but we need to find ways to persuade those in charge of policy and practice to prioritise and fund the roll out of this training.

The biggest challenge is the societal one.  How can we bust the ‘beauty myths’ – the idea that a more ‘attractive’ appearance is the key to happiness, relationship and occupational success – and instead, promote positive attitudes towards diversity in appearance?  Achieving change at this level is complex, challenging and definitely not for the faint hearted.  To make progress, we all need to lean in and get involved.  Face Equality Week is a great place to start.

Nuffield Council on Bioethics report on Cosmetic Procedures.  2017.  Available from www.nuffieldbioethics.org

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Filed Under: face equality, facial injury, human rights, Visible Facial Difference

Adam Pearson: Face Equality Week

May 18, 2020 by Fay

Adam Pearson: Face Equality Week

The Author

Adam Pearson

Interface face

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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Filed Under: face equality, human rights, Visible Facial Difference

Emotion, Lived Experience and Caring in AboutFace

March 21, 2020 by Fay

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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Filed Under: face equality, project update, Visible Facial Difference

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