Disfigurement: A Call for Awareness

(republished, with permission, from the Pennsylvania Psychologist)

When I was four years old, I survived a fire which burned away my lower lip, chin, and neck, permanently scarring two-thirds of my tiny body. Over decades, I have endured approximately 75 procedures, vastly improving my appearance but still leaving me noticeably scarred. I am also a clinical psychologist, author, and speaker.

The disfigured community, of which I am a proud member, includes people with acquired disfigurement (survivors of burns, accidents, cancer, etc.) and people born with disfigurement (birthmarks, cleft palates, neurofibromatosis, etc.). We endure unwanted staring, social avoidance, bullying, discrimination, dating challenges, and on-line harassment. Alarmingly, a UK survey of more than 800 disfigured people found that one-third of the respondents had been the victim of a hate crime (Changing Faces, 2017).

Disfigurement is a condition whose damage can be vastly ameliorated by social acceptance. Yes, there can be trauma associated with disfigurement, and self-image issues. Psychotherapy can be helpful in treating these conditions. However, many people report that their biggest issue is how others see them, which is not something that psychotherapy can fix.

Film and TV strongly contribute to the problem. From an early age, many children watch movies in which the villains are portrayed as scarred or somehow wounded. Beauty and the Beast features a character (Beast) who is rendered hideous when he is mean and restored to handsome when he learns to be kind. The Lion King features an antagonist who is literally named Scar, for his facial wound. Darth Vader, in Star Wars, is eventually unmasked as a burn survivor. Voldemort, in Harry Potter is another disfigured villain. Repeatedly and relentlessly, disfigurement is used as a cheap trope to signal to the audience that a character is bad.

Is it any wonder that people are biased against the disfigured?

Until recently, prejudice toward the disfigured was hypothesized to be innate, due to an in-born fear of “catching” whatever affliction caused the damage. Recently, however, Dr. Workman proved otherwise. Working with a hunter-gatherer tribe in Tanzania, he found that people unexposed to Western culture did not harbor negative feelings toward the disfigured. Thus, we now know that negative attitudes about disfigurement are learned in society (Workman, C., 2022).

Dr. Kathleen Bogart (2020) developed a model of three mindsets used to explain disability/disfigurement: moral, medical, and social. The moral model posits that disability represents punishment for moral failure or sins. This moral model shows up repeatedly in the negative film/TV depictions of scarred characters.

The medical model says that disfigurement is caused by medical issues, which are the patient’s burden to treat and heal. However, most disfigurement cannot be truly healed, only ameliorated. The medical model also leaves the burden of the disability/disfigurement entirely in the hands of the patient and their doctor (Bogart, 2020).

In contrast, the social model states that disability is a social issue, which we should all work together to improve. The problem does not lie with the disfigured person; the problem lies with the world around the disfigured person (Bogart, 2020).

Lest that sound too idealistic, think about people who need reading glasses, which likely includes many of you reading this article. Many people are far-sighted, which is actually a disability. However, minor visual issues are not considered to be a disability, because society has adapted. We can wear eyeglasses, which we can easily purchase at the drugstore. As we age, we can even change the fonts on our cell phones and use a flashlight to brighten the seemingly ever-shrinking menu. There is no negative stigma for far-sighted people, even though truly, they also have a disability (Bogart, 2020).

Disfigured people are not sitting around “waiting on the world to change.” The community of burn survivors is capably led by the Phoenix Society, which offers many resources on social re-engagement, coping with staring, dating, discrimination, and all the pitfalls awaiting those who look different. We learn how to hold our heads high, make eye contact, be friendly, and engage people who might otherwise shun us. These coping skills are crucial to help the facially different lead empowered lives.

Still, the burden should not rest solely on the shoulders of the facially different (a term many of us prefer). Like other marginalized groups, it should not be left entirely to us to convince society to treat us better.

Lise Deguire, Psy.D., author

I frequently present to schools and workplaces about disfigurement issues, beginning with how we are portrayed on screen. I show photos of Freddie Krueger, Scar, The Joker, Voldemort, The Beast, The Phantom, and Darth Vader. The most frequent reaction from the audience is astonishment. Most people have sincerely never noticed these unrelenting negative portrayals of scarred characters as being evil. That is how pervasive this trope is. It is so pervasive that you probably never thought about it.

There are simple ways to help. If you see a scarred character in a film who is evil, point out this prejudice to others. Educate your children. The more people who notice the bias the better; that is how bias becomes societally unacceptable. That is how change can begin.

People frequently ask me how to talk to someone who is disfigured. I scratch my head, because the answer is… the same way you talk to anyone. Be warm, make eye contact and introduce yourself. Do not immediately ask “what happened to you?” For context, imagine that you are consulting a psychologist for an initial meeting, and you are also obese. You might expect, at some point during the session, the psychologist would inquire about your health, which would include your weight problem. However, you would definitely not want the psychologist’s first question to be, “How did you become so overweight?”

Like everyone, facially different clients first need a strong connection with their therapist. Clinicians must be attuned listeners to truly understand the world of disfigurement: the pain of being stared at, the bullying, the fear of dating. Once that therapeutic bond is established, psychologists can help their clients in many areas: self-image, self-confidence, socializing, and peer group connections.

At times, clients may overly interpret social rejections as being entirely due to their disfigurement. A trusted clinician can point out that normal-faced people are also occasionally rejected, and that rejection can be a universal, albeit extremely painful, experience. Clinicians can help prepare and practice responses to intrusive comments. “What happened to you?!” is a common question for the facially different. Feeling prepared for this question can lower anxiety about socializing. Additionally, clinicians can use their usual therapeutic tools to treat social anxiety, post-traumatic stress disorder, insomnia, and depression, all of which can be associated with disfigurement.

It is vital to remember, however, that many of the difficulties disfigured people face are due to how others treat them, due to prejudice, and not necessarily to any prior psychopathology to the client. This is parallel to how we conceptualize minority clients who are dealing with racism. Help your client to conceptualize these social problems as existing outside themselves and help them develop appropriate coping strategies.

Behind the scars or misshapen features, the facially different are, of course, just like anyone else. We are most assuredly not evil. We long for warm inclusion, and to be welcomed for the “content of our characters,” as the great Dr. King once said. Your awareness can help.

Lise Deguire's multiple award-winning memoir, Flashback Girl: Lessons on Resilience from a Burn Survivor, is available for purchase on Amazon, Barnes & Noble, Newtown Book Shop and The Commonplace Reader.

References

Bogart, K. R. (2020). 3 models underlying assumptions about disability. Psychology Today. Retrieved August 15, 2022, from https://www.psychologytoday.com/us/blog/disability-is-diversity/202011/3-models-underlying-assumptions-about-disability

Changing Faces. (2017). Disfigurement in the UK - changing faces. Changing Faces. Retrieved August 15, 2022, from https://www.changingfaces.org.uk/wp-content/uploads/2021/05/disfigurement-in-the-uk-report-2017.pdf

Deguire, L. (2020). Flashback Girl: Lessons on resilience from a burn survivor. Dr. Lise Deguire, LLC.

Deguire L (2021). From Tragedy to Resilience: One Psychologist’s Journey. New Jersey

Psychologist, 71 (2), 9-16.

Workman CI, Smith KM, Apicella CL, Chatterjee A. Evidence against the "anomalous-is-bad" stereotype in Hadza hunter gatherers. Sci Rep. 2022 May 24;12(1):8693. doi: 10.1038/s41598-022-12440-w. PMID: 35610269; PMCID: PMC9130266.