Psychology and visible difference

We all look different, but some people differ from the 'norm' more than others. Estimates of the number of people affected vary, but the numbers are surprisingly high – it has been suggested that 1 in 5 people have a skin condition and the UK-based charity Changing Faces conservatively estimates that at least 500,000 people in the UK have a visible disfigurement of some kind.

We also live in a society that is increasingly preoccupied with appearance and the pursuit of 'the body beautiful'. Much as we may like to think otherwise, appearances do matter – first impressions and stereotypes based on appearance influence the way we perceive others and the way we ourselves are perceived.

In this article we give a brief overview of the potential psychosocial impact a visible disfigurement can have (see Rumsey & Harcourt, 2005, for a more detailed account). We argue that stimulating, challenging issues are raised, which all psychologists should get to grips with.

What constitutes 'disfigurement'?

This is a surprisingly difficult question to answer. What might be considered different or abnormal by one person might not be noticeable to another. Differences in appearance can result from a wide variety of causes (see box on p.489) – some are evident at birth (e.g. cleft lip), some are the consequence of disease (e.g. psoriasis), some are caused by injury (e.g. burns) or as the result of biomedical treatment (e.g. surgical scarring following cancer treatment). Some are permanent (e.g. amputation) whilst others might be temporary (e.g. some forms of alopecia) or can be surgically altered. In some instances physical function might also be affected (for example treatment for head and neck cancer might result in facial scarring and difficulty in speaking or swallowing).  

The psychosocial impact of visible difference

Having an appearance that is in any way different to 'the norm' can have a profound psychological impact for some individuals (and their families and friends). A detailed understanding of the psychosocial impact of disfigurement is complicated by the need to take account of the many different types of difference, causes and body sites affected, the degree to which it is visible to others, the individual's developmental stage and the numerous personal, social and situational characteristics that might affect self-perceptions and adjustment (see Rumsey, 2002; Rumsey & Harcourt, 2005).

But despite the complexity of variables involved, there is a remarkable consensus concerning the 'headline' problems and difficulties reported by people with a visible difference. These can be roughly grouped into the experience of negative emotions, such as self-consciousness, anxiety and depression, detrimental effects on self evaluations (typically negative self-perceptions and self-esteem in response to their own feelings and the reactions of others), difficult encounters with others (including intrusive questioning and staring) and behavioural consequences such as social avoidance.

Those who acquire a disfigurement, for example through injury, also face their reactions to the trauma itself and feelings of loss towards their former appearance, with some experiencing a profound disruption to their self-concept.  

In a study of 650 adults with a range of appearance-altering conditions, a striking 48 per cent had 'borderline case' or 'case' levels of anxiety as defined by the Hospital Anxiety and Depression Scale (Rumsey et al., 2004). In line with a growing body of research, this study found no relationship between the physical extent of a disfigurement (such as the length of a scar) and levels of psychosocial distress.

However, many people do not experience particular difficulties; alternatively, despite the fact that their appearance presents them with challenges, they deal with these effectively. Some report positive consequences and personal growth from the experience of being different from the norm. We encourage readers to study the moving and very lucid personal accounts of those affected, such as Partridge and Pearson in this issue (and Partridge, 1990; Lansdown et al., 1997), as well as the results of psychological research.

So, adjustment to disfigurement is multifaceted and multifactorial, presenting considerable challenges to would-be theoreticians. In their article, Tim Moss and Ben Rosser consider how psychological theories are attempting to explain the apparent variation in psychosocial adjustment. It remains unclear at this point as to whether resilience and positive adjustment are a stable trait, or whether these attributes can be taught. Ongoing studies are focusing on ways of learning from those who adjust well in order to inform psychosocial interventions and support for those who are experiencing difficulties.  

The article by Esther Hansen and Alex Clarke in this issue considers the current provision of psychosocial care for people with disfigurements in the UK.

Provision of care

Within the UK health system, care for people with disfigurements is constructed around biomedical procedures designed to normalise appearance. Implicit in this approach is the assumption that quality of life will be better if looks are 'improved'. While an appearance that is less noticeably different may be beneficial for many, offering appearance-enhancing treatment in isolation can downplay the multifaceted nature of adjustment, and further fuel the notion that there is a simple relationship between severity of disfigurement and adjustment.

Treatment regimes can be complex and stressful and may include multiple surgical procedures, laser treatment and drug therapies. Recent advances in cosmetic, plastic and reconstructive surgery are widely publicised, (often with the aura of a 'miracle cure') potentially increasing the pressure on those with disfigurements to seek further treatment for their 'condition'.

Publicity over recent years concerning the possibility of whole or partial facial transplantation as the treatment of choice for people with severe disfigurements (for example, after burns or extensive injury) is a case in point. Whilst this surgery might produce the best aesthetic result (and is therefore assumed to offer considerable psychological benefits), the transplant of a donor face, the risks of rejection of the transplant, and the prospect of a lifetime regime of immunosuppression also raise a host of ethical and psychological dilemmas for potential recipients, their loved ones, the families of donors, clinicians, and society in general. These issues have been discussed in detail by the Royal College of Surgeons of England Expert Group (Morris et al., 2007) and Rumsey (2004). The Expert Group concluded that psychologists have a crucial part to play in the selection and pre-and post-operative support of prospective and actual patients and their families, and of donor families (see Clarke & Butler 2004).

A role for psychologists

We believe that an appreciation of the psychological impact of disfigurement and of appropriate methods of intervention and support would be an advantage for psychologists working in many different spheres. Many of us will encounter people with visible differences in some aspect of our professional work, whether this is in academic or applied practice, as a student, study participant, peer or client. In each instance, the visible difference may or may not be a focus of concern for the person involved.

In addition to being aware of the issues in general, all areas of psychology have a specific contribution to make.?Let's start with social psychology, as early research was typically the preserve of social psychologists. Their studies provided evidence to support previously anecdotal accounts that people respond less favourably towards those with a visible difference and may avoid social encounters with them. For example, given a choice of seats on a train, people tend not to sit next to a person who has a visible difference (see Rumsey et al., 1982). Early research also explored the (predominantly negative) stereotypes held about people with a visible difference.

Although it is illegal to discriminate against any person on the grounds of ethnic origin, gender, sexual orientation or marital status, it is still widely accepted that we make 'snap', often stereotypical judgements of people on the basis of their outward appearance (Linney, 2004). Research by Rumsey et al. (1986) challenged the assumption that this avoidance was due only to negative attitudes (uncertainty and embarrassment also play a part), and demonstrated the importance of good social skills in helping to overcome the possible negative experience of interactions with other people. This research influenced the development of interventions focused around social interaction skills training for people with a visible difference (Robinson et al., 1996).

The assumptions that people with a disfigurement may make about other people's reactions to their appearance have also been researched. Kleck and Strenta (1980) found that people who believed that a temporary scar had been put on their face using makeup attributed people's reactions to them as being negative and due to the scarring – even though the cosmetic scarring had, without their knowledge, been removed.

In addition to attribution research, in recent years psychologists with an interest in cognitive processes have started to unpick the factors and processes that influence individuals' psychosocial adjustment to an altered appearance (see Moss & Rosser's article on p.492).
Since the challenges presented by disfigurement might be more pronounced at key developmental stages – for example when making the transition between schools or developing new relationships – educational, developmental and clinical psychologists have influenced interventions to help children manage the potential stress of a new school environment and develop strategies to deal with teasing and bullying (for example Maddern et al., 2006).

For some people, a visible difference might be particularly challenging in the working environment. Whilst the Disability Discrimination Act 1995 makes it illegal to discriminate on the grounds of severe disfigurement, any concerns that a person has about their disfigurement might be exacerbated when applying for jobs or promotion since these activities involve judgements by others. Occupational psychologists have a contribution to make in supporting employees and employers who have a disfigurement, as well as promoting equal opportunities amongst employers and wider organisations.

Clinical and counselling psychologists might be approached by clients whose appearance is the direct or indirect reason for seeking support. A variety of therapeutic interventions have been employed in such contexts, notably cognitive behavioural therapy (e.g. Kleve et al., 2002; Papadopoulos et al., 1999) and social interaction skill training (e.g. Robinson et al., 1996). However, there is a need to further develop and evaluate appropriate psychosocial interventions. Furthermore, since relatively few qualified psychologists have specific expertise in working with people with a visible difference, it can prove difficult for those who might benefit from their support to access appropriate services. For this reason, the ongoing development of online interventions has the potential to offer considerable benefits in this area. In addition, initiatives to introduce specialist training for psychologists are needed.

Within a health setting, psychologists need to rigorously evaluate the implications of advances in biomedical care and surgical developments, in particular the widely held assumptions that these will necessarily confer psychological benefits. Health and clinical psychologists are able to advise healthcare professionals on how best to offer appropriate psychosocial care and support for patients undergoing treatment for a visible difference or that will alter their appearance in some way (see Rumsey & Harcourt, 2005).

Challenges ahead

In addition to increasing our understanding in the areas outlined above, one of the greatest challenges for all psychologists interested in this area, is how to tackle society's attitudes about appearance and the prevailing bias towards physical attractiveness and beauty that works to the detriment of people with visible differences. There is also a need for further research to underpin the most appropriate methods of support and intervention for those who are experiencing difficulties, whilst also recognising that living with a disfigurement is not necessarily a negative experience for all.

We hope that this collection of articles will demonstrate the opportunities and essential roles for psychologists in this stimulating and challenging area.

BOX TEXT: Disfigurement
The word 'disfigurement' is used to describe the aesthetic effects of a mark, rash, scar or skin graft on the skin or an asymmetry or paralysis to the face or body. Changing Faces uses it as it is a succinct, generic term widely understood by the general public and it is enshrined in British law in the Disability Discrimination Act (DDA) 1995, which protects people who have 'severe disfigurements' from discrimination in employment or as customers.

The charity Changing Faces uses the word primarily as a noun but avoids it as an adjective (i.e. a 'child with/who has a disfigurement' rather than 'a disfigured child'). As 'disfigurement' is not a very positive word, some people prefer to use 'visible difference' or 'unusual appearance'. Changing Faces also encourages the cause of a person's disfigurement to be spelled out (e.g. a person with a Bell's palsy, cleft lip, etc.), because this informs about their medical condition.

BOX TEXT: What are the causes of disfigurement?
There are many causes of disfigurement – some acquired during life, others present at birth. Disfigurement can affect anyone at any time, at any age, from any ethnic group.

New research commissioned by Changing Faces has reached new estimates of the prevalence and incidence of disfigurement:
-    542,000 (or one in 111) people in the UK have a significant disfigurement to the face.
-    92,000 have congenital or birth conditions like birthmarks, cleft lips/palates
-    66,000 have disfigurements from accidents, such as burns and facial scars
-    40,000 have cancer-related disfigurements, from surgery for skin cancer
-    100,000 have disfigurements from facial paralysis including from stroke
-    220,000 have disfigurements related to skin conditions like psoriasis, vitiligo and acne
-    1,345,000 (or one in 44) people have significant disfigurement to their face and body.
-    415,500 people are expected to acquire a significant facial disfigurement in the period of a year, some of whom will not survive and some of which will be temporary.

-    Nichola Rumsey is Co-Director at the Centre for Appearance Research, University of the West of England, Bristol
[email protected]

-    Diana Harcourt is Co-Director at the Centre for Appearance Research, University of the West of England, Bristol
[email protected]

Explore the rest of the edition

References

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