By AAAF President and Founder, Chel Campbell.
Diversity: Identifying and reflecting on each individual uniqueness and being able to recognise our own individual differences. Diversity is certainly a buzzword being thrown around lately, and it’s often used to address or add politeness to certain social groups. I talk regularly about supporting appearance diversity as one of my passions and drivers of being part of AAAF. But what does that actually mean?
The topic of diversity is more complex than I first thought. It goes far beyond the common diversity issues of gender, race, religion, and disability. Diversity runs much deeper than this and also comprises dimensions of diversity based on personalities, experiences, appearance, beliefs, and reactions to events. When understanding this, it becomes easier for me to handle the everyday situations I am placed in with my son, who has been living with Alopecia Areata since early childhood.
Most people with Alopecia Areata have experienced some sense of discrimination based on their appearance, as an actual or perceived difference to the ‘beauty capital”. It can be difficult to know how to respond to this, and how to react to an uninformed person or unkind comment. For me, the skill of active listening becomes paramount if I am to gain an empathic understanding of the individual in front of me and be able to demonstrate unconditional positive regard.
After all, it is human nature to look for similarities and to identify with others; it is at the core of socialisation. But it is so hard to ignore the judgement and exclusion of people that happens face to face. For me, it can be tiring, and for my son, it can be demoralising.
As a mother, it has taken me a long time to overcome the challenges that accompany appearance diversity. When my son was growing up, there was no such idea as appearance diversity to explain our experiences. Therefore the feelings of those being singled out in society were never voiced, and if they were voiced, it was generally done by a person of support.
I clearly remember embarrassing my son at a local football match, where I reacted to finger pointing and comments being made about him. It did feel liberating at the time, until I saw the horror in my son’s face. Not my proudest moment as a mum. It was from this experience I learnt that the challenge comes in identifying difference and being ok with it – working with it, rather than being confronted or annoyed by it. I now try to turn each experience of conflict into an opportunity to recognise the situation at hand and remind myself that those who are questioning are merely them trying to identify with a condition that they have never experienced and hopefully never will.
It was important for me to understand how my son’s appearance affected his wellbeing. To get an understanding I comprised some strategies and repeated these investigations yearly;
- I would listen to my son and take his feelings and fears seriously.
- I would try and not take everything into my own hands (from age 9), as he needed to feel that he had control.
- I had to give him his own kit bag of “tools” so he could work his own non-violent ideas and strategies for coping with the situations he faced.
- I emphasised on a regular basis that being stared at, pointed at, or name called is not his fault.
- And I always questioned the why behind not wanting to go to the place where he felt uncomfortable and finding excuses to not participate.
I have found that by not adversely reacting to the stares, questions and intrusions, but rather informing, and trying to have them appreciate your unique experiences, this enabled them to frame their own references with individual differences. I’m sure we can all relate to the words of name calling such as “you’re bald”, and retaliating with “Well you’re *insert insult here*”. But should we? Does that instinct to retaliate help? Wouldn’t it be better if we simply just advise them why there is hair loss? For me, I advise.
The individuals who react negatively to our diverse appearances, those make judgements and exclusions, they have never experienced some of the challenges associated with Alopecia Areata. This is why I try to respond with information and empathy. Empathy and sympathy build compassion. It is extremely hard to be a bully or throw negative comments when you feel compassion. When we respond with education and understanding, we start a conversation and make way for things to be better in the future.