Reading about the current Changing Faces You are not Alone campaign, which tackles the subject of men with visible differences struggling to talk about their appearance, made me reflect on my own journey as a man whose appearance is certainly very different.
From the age of three or four I have had a very visible facial disfigurement caused by a tumorous condition. I am exceptionally lucky; I have a talented and incredibly loving mother who was determined that I should have as normal a life as possible. This formed the foundation of my relationship with my looks.
Protected by the loving support of my mother and doting grandparents I started life knowing that I looked different but being blithely unaware of why that should stop me from achieving what I wanted. Encouraged to develop interests and experience all that life had to offer; I am fortunate to have had a very happy childhood. We only have one infancy so, to a large extent, whatever we experience is ‘our normal’.
Long periods in hospital and many operations was my childhood normal, it’s not the pain and stress of hospital that I remember but the days out, playing in the snow and the excitement of exploring new places and things. However happy childhood might be, adolescence comes. By my teens I was a bright and confident chap in many ways but with a growing sense of the disparity between how I saw myself and how other people saw me.
For me, how I looked was my normal, I didn’t spend much time thinking about how different that was from other teens. It’s a difficult time for everybody as they strive to develop their identity and individuality, very often by trying to look like everyone else. Choosing to adopt the same fashionable haircut as their peers or wearing the uniform that identifies them with a chosen music or culture genre. Having a facial difference makes that pursuit of an identity more difficult, particularly when some are only prepared to identify you by your disfigurement.
Avoidance became a way for me to deal with my appearance in my mid-teens, I would try to ensure that I didn’t draw attention to my facial difference. My embarrassment in an English class remains a vivid memory, as I awaited my turn to read aloud a passage that included a reference to scanning a page with both eyes; I don’t have two eyes and was sure that someone would point this out in front of my peers.
That was when I realised that I was actively avoiding anything that might lead to having to talk about the detail, reality or my feelings about my appearance. The all-too-frequent direct question “what happened to your face?” made total avoidance impossible, fielding intrusive questions however, is not the same as choosing to talk about one’s appearance. Even answering questions, I found myself effectively choosing evasive tactics by using quick and often untrue statements about it being a car accident or glib humour such as “I cut myself shaving”.
This avoidance of owning the cause and reality my disfigurement led me to a kind of epiphany. I noticed how much more comfortable people were if they could attribute my difference to something that they could understand, such as an accident. The easiest times for me were always during convalescence following surgery when I was often bandaged thus looking very much like the victim of some mishap.
People generally weren’t disturbed by how I looked but rather by a fear of the unknown. People also seemed to be reassured in their own mind that I obviously looked like everyone else before and that somehow accidents could always be repaired, “The doctors will fix you up.”
This led me to be much more comfortable with and open about my appearance and why I looked different. By my late teens I would often seek to address the elephant in the room because dealing with that fear of the unknown made everyone more comfortable and hence normal interaction easier.
There are far more interesting things to talk about than my appearance but I’m no longer embarrassed or reluctant to discuss it; it’s part of who I am. It’s also a useful tool in trying to address the prejudice and inequality that exists today for all people with a visible difference, a passion I have had for thirty years.
Being comfortable talking about your appearance does not mean that you should not have boundaries; I choose how much, when and with whom I share any detail about my appearance or how it makes me feel. Sometimes that choice can be taken away from you. Perhaps two of the most common albeit polar reactions people can have when meeting someone with a visible difference is to avoid any reference to the person’s difference or feel compelled to say something, anything to acknowledge it, both can be equally awkward but neither are intentionally offensive and both can be resolved allowing positive interaction. I take great exception to those people that try to demonstrate how comfortable they are with me looking different by constantly making references to my disfigurement. Even worse are those that make jokes about how I look to show ‘how okay they are with it’! Looking different can create unique experiences that are really amusing, these experiences are something that I can laugh about with friends that genuinely are ok with it.
Marc Crank is a third Sector leadership and management consultant. He has been campaigning for more than thirty years as a disability and equality rights activist and also has twenty years’ experience as a regional and national charity CEO, specialising in disability/health advice, support and advocacy. Committed to multi-agency, cross-sector collaboration, Marc won an award in 2007 for his contribution to cross-sector partnership development across Staffordshire. Passionate about equality and empowerment of marginalised groups Marc combines lived experience with the skills and knowledge gained from his varied work and voluntary roles. Marc sits on the LEAP (Lived Experience Advisory Panel) for the AboutFace project.