Anahita Sharma, 3rd-year medic, explores the reality of living with a physical disfigurements and ‘disabilities’.
Flicking through the shelves in the Anatomy Resource Centre as a first year at St Andrews, I found a book on “physiognomy”, which is the pseudoscience of making character judgments about a person by his or her physical characteristics. Page after page, the book poured arguments on the inference of traits by the shape of one’s cranium. At the time, this was humorous to me in its incongruity in a school that advocates evidence-based decision-making. Two and half years down the line, however, this reaction has admittedly taken on a quality of sadness.
Through simple observation, it appears that some degree of physiognomy – a subtle, perhaps unconscious, discrimination – is practiced in everyday society. It appears that certain trajectories are turned on and off because they depend more or less on professional face-to-face interactions. Douglas Adams iterates this well – “Assumptions are the things you don’t know you’re making.” This can make being a patient who suffers from a disfiguring condition an isolating and self-limiting process, and necessitate cosmetic intervention even when not functionally necessary, as not every individual possesses the mental strength and self-esteem to continually bat off such assumptions. The prejudice against an individual when his or her appearance fails to prescribe to a culturally specific ‘norm’ of ‘beautiful’ has been popularly branded “lookism”.
From the ARC, let me take you into the Dermatology department at Queen Elizabeth Hospital, one of two central hospitals in Malawi. Malawi is a densely populated sliver of a country in Sub-Saharan Africa. Its healthcare infrastructure utterly collapses under its burden. The high mortality rate, however, is only partially a reflection of the standard of care. It is more strongly a reflection of structural healthcare inaccessibility, treatment delay, advanced presentations of disease, and the intrinsic comorbidity of the general population. Because malnutrition is endemic, every child’s mid upper-arm circumference is screened on entry into the pediatrics annex, as a proxy indicator for in-patient therapeutic malnutrition rehabilitation. Palliative care deals with the most simple of requests, such as the capacity to phone home, or the acquisition of a packet of biscuits. For the typical Malawian, the traditional healer would be his or her first port-of-call, as opposed to a conventional medical practitioner.
“Hello, hello. You are very welcome,” said Ian, uttering a familiar Malawian greeting.
He ushered us into a room, a smile spreading over his face – a smile that was pale pink, with lips that were slightly dry. Ian was the man who facilitated the ‘Albino’ Clinic every Tuesday, by taking a history, doing a basic skin assessment, providing sunscreen, sunhats, and sunshades, and referring patients onto a professional dermatologist if he recognised signs of skin damage, as this patient subset are more highly susceptible to skin conditions and cancers. 
We looked at him – and in objective terms, he looked ‘different’. Whilst his features followed the smooth contours of the Malawian, he was ‘white’, and sported sparse, pale, hair. He was, so to speak, an “albino”. However, he was also a man with a sunny, radiant, disposition. He exuded formidable warmth as he invited us into his clinic.
The room had walls of peeling turquoise paint, illuminated weakly by tube light. Stickers on the wall read “Involve People Living with HIV/AIDS”, and “Stop HIV/AIDS Discrimination.” I wondered whether this theme of social inclusion would feature in our subsequent conversations. What could the social consequences of living with albinism be? Surely it was simply a different skin colour, and could not represent a ‘true’ disability? A disability is defined, under the UK Government’s Equality Act (2010), as a “physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities”. 
But surely albinism was simply nothing more than a manifestation of an absence of melanin – a pigment produced in the epidermis that colours our hair, skin, and eyes?
The first person to enter was a mother, and he gave her four bottles of sunscreen. The instructions on this bottle were printed in French and German – representing one pitfall in the process of treatment delivery and comprehension. A distinguished and well-spoken gentleman subsequently entered, with his grandson.
“Is there a difference between SPF 30 and SPF 50? And will he suffer from an adverse skin reaction if he stops wearing sunscreen?” were his questions, which instantly revealed misplaced health beliefs.
Sunscreen is simply too expensive a commodity in Malawi, which is partly a result of the low demand for it; patients travel lengthy distances to stock up on a few months’ worth. The clinic was entirely funded on such donations. It once suffered a closure for six months on their cessation. The patients themselves were highly encouraged to attend, as any skin abnormality could be a sign of more insidious pathology, and were not be dismissed.
“To be African is to be Black,” stated Ian.
To delve into the complex truths of such an ideology is not the focus here; the point is that to suffer from albinism under an African sun carries with it stigma that would not be similarly associated under a different context. It became a disability from both physical – as the exposure to sunlight is unrelenting – and psychological standpoints. According to Ian, 40% of patients with albinism in Malawi were unemployed; this is out of an estimated 15,000 in a population of approximately 16 million. Being a foreigner in Malawi, I was aware of a tension between the locals and outsiders; the white man was directly referred a ‘Muzungu’, which is translated as, ‘He who wanders aimlessly’. I was curious, however, whether this tension extended to a man who self-identified as Malawian, yet did not share the typical phenotype.
Psychologically speaking, this was not purely a case of colour. Seemingly uncommon and inexplicable aberrations in human appearance and behaviour tend to be pinned to a known causal agent, out of fear – and Ian’s father himself linked his children’s albinism with witchcraft on his wife’s behalf. This obviously placed a tension on the marriage; in a twist of fate, on his second marriage, the man fathered twins with albinism. There is a known autosomal recessive genetic basis to the condition, but as genetics is not a concept well understood within Malawi’s cultural framework, this is understandably difficult for the layman to conceptualise.
Other common beliefs surrounding albinism were anecdotally shared,
“In some places in Africa, albinos are killed for their body parts, for medicinal purposes,” continued Ian, “An Albino is not a human being. He, or she, is an extraordinary creature.”
These misperceptions were clearly at odds with the characters I met over the course of the afternoon; with time, one promptly became blind to their pallor. One girl was particularly sassy; she was watching a movie on her laptop, wearing sunglasses, and propping her feet up on the desk; she was employed as an accountant at an association for disabilities. I could not help but admire her confidence. Ian picked up my iPhone and examined it at a close distance, turning it about to see it at all angles. I noticed he had a nystagmus, which seemed to be common recurring feature amongst the patients. This caused me to wonder if albinism was inherited with a set of developmental and neurological deficits?
This was indeed the case; albinism is associated with a number of visual defects. This poses an additional barrier in terms of literacy “They should print words big enough so we can read it. We’re just like any other learner… like any other student.”
“If I touch him, I will become an albino,” Ian added another myth, “The most side-lined group is the Albinos… people who are useless, who can contribute nothing to society.”
He mentioned his own romantic problems, “Your partner has to deal with parental and societal pressures, in addition to the regular struggles of a relationship.”
Ian and his friend ran a show on the radio, covering common health challenges. As the radio is an accessible medium of entertainment and communication in Malawi, it made sense as a platform for discussion using local vernacular. It promotes literacy; it promotes neighbour-to-neighbour discussion; it reaches a wider, rural, audience; radiowaves travel further than newspapers. One of his patients, Hollis, was a primary school teacher. He offered what I consider excellent philosophy.
“First, you must understand yourself. Then, you must expose yourself to the society you live in. They must know your problem.” He spoke with a degree of gravity, “You must accept your status. I am urging my fellow Albinos… they are not courageous enough.
“An albino is a human being. I have potential. Like any other person.”
He provided a simple example of where cultural norms may conflict with an Albino’s personal needs; “You are not allowed to wear a hat in the presence of elders. But if an albino child wears a hat in front of elders, they should understand. He or she deserves to be respected.”
The wearing of the wide-brimmed hat was strongly encouraged. Ian used a simple analogy to explain this to the patients, “Once a layer of skin comes off, there is another one. Then again, another one. What comes next? Cancer.”
These perspectives were interesting to me as an individual with a congenital craniofacial defect – a unilateral cleft lip and palate. “Craniofacial” disorders encompass a spectrum of conditions which affect the structure and function of a baby’s head and face; these laden a baby with a host of physical, learning, developmental, and social challenges that would otherwise not have ensued. Whilst I was gifted an orofacial cleft, there are a variety of other defects, commonly classified under the umbrella of “craniosynostosis” , which can be defined as the premature fusion of one or more of the sutures which form the cranium which results in growth restriction in one direction, and compensatory growth in another, due to an elevated intracranial pressure in the developing infant.
As an individual with circumstantial access to surgical intervention, an education, and formidable social support, I had it repaired, was “normalized”, and was subsequently freed of the burden of discrimination. I am aware I had certain freedoms that enabled my birth defect not to hinder subsequent growth, and that had I been born in a different context, this would not have been the case. “Tu veux ma photo?” is my favourite French idiom, because it encapsulates the experience excellently. Growing up, I encountered arguments against supporting individuals with disabilities that resembled those of the ‘Eugenics’ movement, and these always forced me to think twice. As my deformity was congenital rather than acquired through trauma, there was little process of shock, shame, and acceptance – I simply did not know any different.
One study  compared the levels of social functioning of those with congenital and traumatically acquired facial disfigurements with those of a control group, measuring levels of interpersonal behaviour, social avoidance, and distress, and concluded that the patient’s “subjective” measurement of their own appearance was the best predictor, as opposed to the “objective severity” of their defects.
We’re all worried about our faces. We’re all worried about acne. However, facial deformities pose a different battle. They are sufficiently significant to warrant clinical intervention.
A qualitative study carried out in San Jose in 2010  considered whether media-constructed images had a negative effect on women with facial disfigurements, and concluded that an individual’s personal life experiences and personal insecurities were of greater factorial importance. As an adolescent, I remember flicking through magazines and wondering whether beauty, and Mammalian health, truly was determined by symmetry. Millstone  describes four myths commonly associated with disfigurements:
- The Myth of Surgery
Surgery is an aesthetic ‘cure-all’. This leads to false expectations on the patient’s behalf;
- The Myth of Ugliness and Evil
A disfigurement entails having a ‘damaged’ personality. Films and fairy tales commonly perpetuate this idea – remember the witch in Snow White?
- The Myth of Attractiveness
An attractive individual enjoys a greater degree of success in life; this is capitalized on by the diet, and cosmetics, industry;
Sociobiological perspectives have suggested that a preference for attractiveness would help to screen out individuals with genetic irregularities, and has reproductive functions;
- The Myth of Severity
The severity of the disfigurement is proportional to the distress experienced by the individual. This is not an accurate predictor.
The charity ‘Changing Faces’  recognises that individuals with facial disfigurements experience amplified feelings of “anxiety, anger, fear and embarrassment”, as the “face is the first part of the body that we normally see when we meet a person”. Research from the Centre of Appearance Research has also revealed that people chose not to sit next to individuals with disfigurements on public transport.
It is a tried and tested belief that we infer a number of qualities, including trust and competence, through facial appearance and expression. Partridge (1990) describes individuals suffering physical disorders as having to wear a “mask of disfigurement” such that the disorder does not obscure their real selves, and describes the “SCARED” syndrome  as a set of reactions an individual with disfigurements commonly encounter, and by extension, mirror:
These beliefs underpin the relentless drive for cosmetic surgery. However, it is worth considering there are contexts in where there is no ‘real’ measurable, but rather a ‘perceived’, functional or social outcome from cosmetic surgery. Consider the genioplasty in Korea, or the rhinoplasty in California. In such cases, it has been suggested that plastic surgeons more carefully consider patient selection  by considering the likelihood of a satisfactory psychological outcome, by screening for the following factors:
- Unrealistic expectations;
- Inappropriate motivations (whether of an intrinsic or extrinsic nature);
- Underlying psychological disorders, such as body dysmorphic disorder (BDD), which describes a disproportionate preoccupation with one’s appearance;
- Psychological vulnerability
Because, let’s be frank – one will never attain physical ‘perfection’ – this is incredibly subjective.
The neuroscientific basis of facial emotion recognition has been linked to the amygdala.  Alexander Todorov  has extensively studied responses to the face; 33 milliseconds is purportedly the length of exposure before a judgment of trust is made. We make social categorisations based on facial appearance. He describes this phenomenon as the “overgeneralization hypothesis”: the hypothesis that qualities such as emotion, mental state, approachability, and age, are quickly inferred from one’s face.
Why is this important to think about?
As future medical professionals, we need to train out our fear responses, train out our immediate assumptions, and focus on the patient in front of us. They have a history, as we all do. Patients are concerned not solely about their presenting pain, but the stigma their illness generates (both ‘perceived’ and ‘actual’ types), the effects it has on their lifestyles, their home environments, and the effects it has on their interpersonal relationships. Each episodic presentation ties into a larger picture. The face carries huge psychological consequence as a component of one’s identity, but there is something strongly to be said of the saying, ‘don’t judge a book by its cover’, which can be further extended into ‘don’t judge a patient by his or her illness’. Each and every experience is dramatic and personal.
- Adolphs, R., D. Tranel, H. Damasio, and A. Damasio. “Impaired Recognition of Emotion in Facial Expressions following Bilateral Damage to the Human Amygdala.” Nature372.6507 (1994): 669-72. Web. 21 Jan. 2015.
- “Albinism.” NHS Choices. NHS, n.d. Web. 21 Jan. 2015.
- “BBC Inside Out: Changing Faces.” BBC News. BBC, 7 Feb. 2005. Web. 21 Jan. 2015.
- “Definition of Disability under the Equality Act 2010.” GOV UK. N.p., n.d. Web. 21 Jan. 2015.
- Elzen, Marijke E.p. Van Den, Sarah L. Versnel, Steven E.r. Hovius, Jan Passchier, Hugo J. Duivenvoorden, and Irene M.j. Mathijssen. “Adults with Congenital or Acquired Facial Disfigurement: Impact of Appearance on Social Functioning.” Journal of Cranio-Maxillofacial Surgery40.8 (2012): 777-82. Web. 21 Jan. 2015.
- Forrest, Christopher R., and Richard A. Hopper. “Craniofacial Syndromes and Surgery.” Plastic and Reconstructive Surgery131.1 (2013): 86e-109e. Web. 21 Jan. 2015.
- Millstone, S. “Coping with Disfigurement. 1: Causes and Effects.” Nursing Times104.12 (2008): 24-25. PubMED. Web.
- Papadopoulos, Sophia M. “Women with Facial Disfigurements: Impact of Media-Constructed Images of Beauty.” Thesis. San Jose State University, 2010. SJSU ScholarWorks. San Jose State University, 2010. Web. 21 Jan. 2015.
- Paraskeva, N., A. Clarke, and N. Rumsey. “The Routine Psychological Screening of Cosmetic Surgery Patients.” Aesthetics(n.d.): 28-32. Web. 21 Jan. 2015.
- Pattison, Stephen. Saving Face: Enfacement, Shame, Theology. N.p.: n.p., n.d. Print.
- Todorov, Alexander. “Mapping the Social Space of the Face.” http://www.apa.org. American Psychological Association, Mar. 2010. Web. 21 Jan. 2015.