I have had alopecia since I was eight years old.
Being a female actor with the condition alopecia universalis (hair loss of the entire body), I know what it is like to be judged. Particularly in an industry where alopecia has historically been seen as a negative thing. This is thankfully now changing, but incidents like this year’s Oscars show we’ve still got a long way to go.
I understand that comedy brings people together through laughter and that sometimes we laugh at each other to break down barriers and create bonds with one another. But making jokes about a visible condition should be taken just as seriously as if someone were to make a joke about someone’s disability, race or sexuality.
Chris Rock making a joke about alopecia in front of millions of people on national television will make other people think it’s OK for them to do the same. There is a huge difference between someone who has alopecia making a joke about it to break the ice and someone who doesn’t have alopecia making a joke about it. Whoever the joke is on should hold the mic, not the person cracking the joke.
Rock should have known better. He wrote and presented the 2009 documentary Good Hair, which explores hair in black culture and ways in which it is discriminated towards in western society. He is no fool to the pressures some women and men go through to maintain a full head of hair. But he did it anyway; it was inappropriate.
To make matters even worse, this inappropriate joke took place weeks after 12-year-old Rio Allred from Indiana committed suicide after being bullied about her alopecia.
I know what it’s like to be laughed at by children and adults; to be alienated; to be seen as tragic
Will Smith was right to call Rock out on how badly considered his joke was, but I don’t agree with how he dealt with the situation. I do not condone violence and don’t believe that he should have slapped Rock on stage.
Instead of resorting to violence, he should have taken to the stage to face the audience and tell the world why it was not OK for Rock to make a joke about alopecia, to take the opportunity to educate people about it and tell the world what it’s like to live in a family with alopecia. What it is like to live in fear of your loved ones becoming someone they do not visually recognise. What it is like to hear the ones you love crying slumped down on the ground on the other side of a locked door.
I know all too well what it’s like to have your friends suddenly vanish on you and turn their backs when you need them most. What it is like to be laughed at by children and by adults, for something that you didn’t even do, that wasn’t your choice. To be picked on, to be alienated, to be seen as a symbol of tragedy, as an object of mockery.
But I also know what it’s like to bond with your family in sharing your pain. What it is like to become stronger because of your loss and discover your strengths. What it is like to become the leader of your own destiny without fear of being someone everyone else wants you to be. To become a champion of your own personal challenges and difficulties. Becoming a spokesperson (I am now an ambassador for Alopecia UK) for all of these things can be deeply empowering.
We need to do more to support those of us living with the condition. Perhaps an increased awareness of alopecia and those it affects is one of the best things to come out of this all.
Joelle is an ambassador for Alopecia UK, where you can find more information and support about the condition
