'The Social Stigmatisation of Facial Disfigurement'

Although having a facial disfigurement secondary to trauma, a birthmark, a birth defect or some abnormality does not affect a patient’s health; society deems it often leads to stigmatisation and limitations of opportunities afforded to others.

Facial disfigurement is the state of having one's facial appearance harmed medically, either from a disease, birth defect, or trauma. Although this perceived defect does not usually affect a patient’s health; the condition leads to social stigmatisation, isolation and incurs limitations of privileges and opportunities otherwise afforded to those without the problem. It is estimated that presently there are about 40,000 adults and children in the UK (1 in 150 people) with significant facial disfigurements and 1 in 500 children is seriously enough affected by facial disfigurement to result in severe psychosocial problems, poor self-esteem and depression. Studies have shown that the general population respond to people with a facial disfigurement with prejudice; intolerance, less trust and respect and often try to avoid making contact or having to look at them. Although modern reconstructive surgery and medical treatments help in making some of the unusual features less noticeable but usually it doesn’t remove them completely and the patients have to employ coping strategies that include avoidance of social contact, alcohol misuse, and aggression. For those affected, it can turn a simple social event into a major ordeal.

The causes of facial disfigurements are highly variable. At one end of the scale are patients who are born with significant craniofacial abnormalities such as Apert syndrome, while at the other, we have less aesthetically challenging problems secondary to skin conditions such as cystic acne, birthmarks or possibly vitiligo. In between, we have a myriad of cases secondary to diseases such as elephantiasis or leprosy or because of congenital disfigurements caused by conditions like neurofibromatosis. A few years ago, facial lipodystrophy syndrome (HLS) was a major problem for many HIV patients undergoing long-term use of highly active antiretroviral therapy (HAART). The psychological facial wasting effects of the condition were extremely distressing and these patients had high levels of depression, suicide as well as social withdrawal and isolation. In fact, a UK study showed that 47% of patients with HLS had HRSD scores for severe depression. It was for this reason and the lack of proper aesthetic therapy to manage this complex condition that I pioneered a facial endoprosthesis technique to replace the malar fat pad in the Ailesbury Clinic some years. It restored dignity to these otherwise socially isolated patients. Thankfully, the new anti AIDS drugs thankfully do not give rise to these types of problems.

Weaved into this myriad of pathologies are those who have already suffered great emotional trauma because of benign or malignant facial cancers, scarring secondary to road traffic accidents or burns etc. While skin conditions like acne scarring or vitiligo make not immediately appear to be of major psychological concern, these patients often disguise their facial disfigurements through camouflage techniques and live a life behind a mask of coloured creams. I personally witnessed this phenomenon treating one of the most famous faces in the world for vitiligo a few years ago. Whatever the cause, society presently dictates that people with a facial disfigurement are perceived seen to be less physically attractive, less socially desirable and less likely to find an acceptable spouse. In this article, I will try and analyse what actually drives such a bias in every cultural society on earth, especially as it is guided towards people who are already often have been the victim or gross trauma or unfairness.

Before we start this exploratory journey, let us define two underlying words; prejudice and belief. The word prejudice comes from the word prejudgment, making a decision before becoming aware of the relevant facts of a case. In recent times, this word has gained prominence when used to refer to legal judgments toward people or a person because of a bias against their gender, religion, race/ethnicity, sexuality or possibly social class. Prejudice is a baseless and usually negative attitude toward members of a particular group. Common features of prejudice include negative feelings, stereotyped beliefs, and a tendency to discriminate against members of the group. While specific definitions of prejudice given by social scientists often differ, most agree that it involves prejudgments (usually negative) about members of a group.

Belief on the other hand is the psychological state in which an individual holds a conjecture or premise to be true. Because our beliefs are the primary determinant of what we do and feel, and even what we perceive, all prejudice can usually be traced to belief systems. Both beliefs and prejudices themselves change with time. Twentieth century Britain seen many prejudices enacted against differing races and religions. In the early part of the twentieth century British people were convinced that Irish immigrants were not as good as themselves, in later years, Jamaicans, Pakistanis and Nigerians have taken that role. These beliefs have in turn also been expressed about Catholics, Jews and more recently Muslims.

Just as we look back at cultural practices of ancient Rome with repulsion, future generations will probably look back at these prejudices with similar reactions. It is impossible for us to try and understand the Roman thinking that feeding Christians to lions was acceptable as a spectator sport. These beliefs were accepted two thousand years ago as these people were seen as a threat to the society that existed then. And they were probably right. History has decided that Christian religion would displace the Roman deities and their ministers would give rise to their own prejudices in turn, especially in the period after the reformation. So, a belief is really just a statement about a perceived reality that we individually experience as the truth. But, in fact, no belief describes the truth about reality. Without exception, beliefs are arbitrary interpretations of events by individuals. Physical objects and events certainly occur in the world, but the meaning that we give the events exists only in our minds, not in the material world. If this is so, why is the prejudice against facial disfigurement so strong and why has it survived the ages?

At the outset, it would be easy to blame the stigmatisation of people with facial disfigurement on the emphasis that our modern image conscious society places on physical appearance. There is continual pressure, through media and other marketing tools for people of every age to conform to what is a perceived normal appearance. However, throughout the centuries, facial beauty has being perceived by many cultures as a human quality that provides a sensory experience of pleasure or goodness. Beauty has generally has been associated with that which is good and ugliness has been associated with evil. The Byzantine Emperor was considered God's Vice-Regent on Earth and his beauty was taken as an essential complement to the perfection of Heaven. For this reason, many deposed emperors were facially disfigured by being blinded or having their noses cut off to disqualify them from ever reclaiming the throne.

During this period of history, society believed that facial "disfigurement" involved the entity being out of balance and harmony with nature and ugliness engendered a deeply negative perception of a person. This simplistic approach to ugliness and by association to facial disfigurements is still reinforced today at every stage by the media and by our education system. Consider our current classic children’s fairy tales, where the Ugly Sisters equate ugliness with evil and Cinderella with all things wonderful or indeed the tale of the Sleeping Beauty or the evil old witch in Hansel and Gretel. It is also reinforced on our TV screens (Ugly Betty) and with film and video villains such as Freddy (in Nightmare on Elm Street) and John Merrick (in Elephant Man). If film makers or novelists were to treat race or sex in the way that they presently portray beauty or ugliness they would probably be subject to society’s revulsion and possible legal prosecution. Then why is society still disrespectful and uncompassionate to people who are usually not contributory in any way to their condition? What causes us to turn away in revulsion from a person with a congenital, traumatic, or malignant facial condition rather than being compassionate and comforting them?

Symmetry of facial form leads to a person having more sexual partners and more satisfactory relationships and this is similar across every culture. In fact, if facial symmetry as a means for determining beauty has indeed an evolutionary basis, then this would explain why it is present in every human culture and even suggests our stigmatisation of facial disfigurement may actually be innate. This would happen if there was an evolutionary benefit to society to allow it to remain in every culture across so many millenniums.

Many scientists now believe that this revulsion may be an innate defense mechanism designed to protect society against disease and bad genes. It is well known that a three month old baby will smile and develop a bonding relationship quicker with a symmetrical face than they will with their own mother. This is probable evidence that this is not learned behaviour. A recent experiment by the BBC Inside Out team demonstrated presenter Julia Hankin made up with tattoo ink by a make-up artist - to give the appearance of a prominent port wine stain. In the course of the programme she took a seat on a busy bus route. It took 65 minutes before someone would sit next to her. Later, on the same journey with the make-up off, it was a very different story and someone took the seat next to Julia after about 30 seconds. Professor Nichola Rumsey, from the Centre for Appearance Research at the University of West England performed similar research on the London tube and found that people chose not to sit next to someone when they had a disfigurement on their face.

Psychologists like Valerie Curtis, a behavioral scientist at the London School of Hygiene and Tropical Medicine believe that the emotion of disgust is similar to fear. "Fear evolved to keep you away from large animals that want to eat you from the outside," but "disgust evolved to keep you away from smaller animals that kill you from the inside." Our subconscious minds constantly scan the environment for signs of potential diseases, she says. If we see one, disgust kicks in and we avoid that object or person like the plague. It appears that even if we know these people are perfectly healthy, our minds are responding to them as if they're not.

So is there anything we can do to change our behavior? Education is probably a good start. We should strive to make atypical appearance more familiar and mundane, possibly following the lead set by Channel 4 and showing people with these types of appearances on television more often. As doctors we must respect and give supportive care to patients with facial disfigurements. For this reason, I have provided an extensive list of specialist organisations such as Changing Faces or the Disfigurement Guidance Centre in the United Kingdom who provide support people living with facial disfigurement and offer advice on all types of treatment.

It's important for parents to learn about their child’s condition and not to be afraid to ask their consultant as many questions as possible. Being better informed about your child’s condition will help them to learn how to cope with it. There are also easy-to-learn, practical skills to help parents overcome some of the common challenges and uncertainties they may face. Children start becoming curious about their appearance from an early age and learn from watching their parents deal with challenging situations.

Disfigurement support groups offer support, information and advice on specific conditions that can cause disfigurement.

Bell's palsy support Bell's Palsy Association

The only UK-registered charity dedicated solely to providing help and information to people with Bell's palsy.

Facial Palsy UK Charity supporting people who are affected by facial paralysis.

Birthmark support The Birthmark Support Group

A UK-based support group for anyone with a birthmark.

Burns support The Children's Burns Trust

The Children's Burns Trust is committed to providing support for burn- and scald-injured children and their families.

Cleft lip and palate support Cleft Lip & Palate Association (CLAPA)

CLAPA is the only UK-wide voluntary organisation specifically helping those with, and affected by, cleft lip and palate.

Craniofacial conditions support Headlines

Support for those affected by craniosynostosis and associated conditions.

The Craniofacial Society - A society for the study of cleft lip and palate and other craniofacial anomalies.

Disfigurement support Changing Faces

Support for people who have disfigurements of the face or body from any cause.

.Epidermolysis bullosa support DEBRA

A UK charity for people with the genetic skin blistering condition epidermolysis bullosa (EB).

Neurofibromatosis support The Neuro Association

Help, support and advice for those affected by either form of neurofibromatosis and their families.

Proteus syndrome support Proteus Family Network

A UK support group for families and individuals affected by Proteus syndrome.

Retinoblastoma support Childhood Eye Cancer Trust (CHECT)

A UK-wide charity for families and individuals affected by retinoblastoma.

Scarring support The Scar Information Service

Providing information on scarring, scar therapies and support organisations.

Sturge-Weber syndrome support Sturge-Weber Foundation

Support and information on different aspects of Sturge-Weber syndrome, a rare neurological disorder.

Treacher Collins syndrome support Treacher Collins Family Support Group

Support, advice and friendship for people with Treacher Collins syndrome and their families.

Vitiligo support The Vitiligo Society

Support for people with vitiligo and their families in the UK and the Republic of Ireland.

Xeroderma pigmentosum (XP) support XP Support Group

Support for people with xeroderma pigmentosum and other related conditions and their families.

Dr. Patrick Treacy is President Elect of the Royal Society of Medicine (London) Aesthetic Faculty. He is Chairman of the Irish Association of Cosmetic Doctors and Irish Regional Representative of the British Association of Cosmetic Doctors. Honorary Board Member of the World Medical Trichologist Association. Fellow of the Royal Society of Medicine and the Royal Society of Arts. (London). Honorary Ambassador to the Michael Jackson Legacy Foundation and the Haiti Leadership Foundation, which opened orphanages in both Haiti and Liberia the past year. He holds Honours Degrees in Molecular Biology and Medicine. He was the recipient of the Norman Rae Gold medal from the Royal College of Surgeons in Dublin. He has also received many national and international academic awards including the MyFaceMyBody Awards in London both in 2012, 2013 and 2016 for innovations in Aesthetic Medicine and Hair Transplant. He also won the prestigious AMEC Award in Paris both in 2014 and 2016 for research relating to cancer patients and complications due to dermal fillers. His clinic won 'Best Aesthetic Clinic in Ireland 2016' and he was runner up in 'Best Aesthetic Doctor of the Year UK & Ireland 2016'.  

He has authored or co-authored more than 200 articles in medical and scientific journals and published many peer-reviewed papers within these disciplines, including a sentinel study on the rising incidence of cutaneous malignant melanoma for the Mayo Clinic, Rochester in 1990. He pioneered facial implant techniques for HIV related facial lipodystrophy and early radiosurgery venous thermocoagulation. He won innovation awards for the use of 633nm phototherapy in facial rejuvenation and the use of platelets in hair transplantation. He is an advanced aesthetic trainer and has trained over 800 doctors and nurses from around the world. He is a renowned international guest speaker and features regularly on national television and radio programmes. He has featured on the Today Show, Ireland AM, CNN, Dr. Drew, RTE, TV3, Sky News, BBC and Newsweek.

•  Winner ‘Best Cosmetic Surgery Clinic in Ireland 2016’ Irish Health & Beauty Awards (Dublin 2016)
• Winner ‘Doctor of Year 2016' (Highly Commended) (London 2016)
• Winner ‘Best Global Clinical Research Case in Aesthetic Medicine’ AMEC (Paris 2016)
• Winner ‘Best Innovative Research Award’ MyFaceMyBody Awards (London 2016)
• Winner CMME Medal for Medical Excellence (Mexico 2016)
• Winner EADV Lecture Award Royal Soc. Medicine (London 2017) 
• Winner Irish Healthcare Awards 'Best Medical Research -Ireland' 2017