In the summer my son Jak turned four, he started to develop strange white patches on the skin of his neck.
Over the course of several weeks, the patches spread to his chest and right arm.
The paediatrician was a little flummoxed and put in a call to a dermatologist. It was, she said, vitiligo.
And so began our journey with a rare condition that most people know nothing about.
I learned that it is an auto-immune condition in which the body destroys the pigment in its own cells. It can affect hair too, and Jak has a small patch of completely white hair. It comes in two forms, segmental and non-segmental. Segmental, which Jak has, affects only one side of the body and doesn’t spread. Non-segmental can spread over the whole body. No one knows what causes it and there is no cure – though there are some treatments which sometimes help (none of them made any difference to Jak, other than causing him distress – so we just stopped).
And it is not contagious.
You can imagine how well that complicated explanation goes down in a school playground, where other small children want to know – insistently – what is wrong with your skin. Jak’s Grade One teacher had a group session where she had the children all look at their skins, and observe how different they were. That worked for a time. Then the questions started again.
Tell the other children it is a birthmark advised the dermatologist, and that worked for a time.
In Grade Four, the questions started again and Jak’s teacher (may her name be ever praised) staged an intervention. She asked us for information and for pictures. She created a presentation that was shared and discussed with every single Grade Four in the school. The questions stopped for good.
And last year, when seeing a different dermatologist about a wart on his knee, Jak was asked if he wanted to try to treat it again. No, he said, this is the way I am. He is, as they say, happy in his skin.
So this week when it was announced that white actor Joseph Fiennes has been cast as Michael Jackson in a television comedy, I was thoughtful.
Of course, the predictable question is how can a white man play a black man? And the predictable joke is that Michael Jackson plainly wanted to be a white man so no problem there then. The interesting thing though is that Michael Jackson had vitiligo, a fact which was confirmed by his autopsy.
In 1993 Jackson told Oprah Winfrey that he had a skin disorder. He said he used make-up to even out his skin tone. “It is something I cannot help,” he said. In the clip, it is obvious that he cannot bring himself even to say the name of his disorder.
We’ll never know now how widely vitiligo had spread over Michael Jackson’s body by the time he died. There are some pictures of him when alive that seem to indicate he had it on his hands, which would explain all those gloves. This is a man who got up every morning and chose clothes and make-up that would completely conceal the true nature of his skin. For years, and years, and years.
So Michael Jackson was not happy in his skin. (He was not happy with his face either, of course). And that for me is a real regret. If he had felt able to show his vitiligo face to the world, children like Jak might have an easier time of in in the school playground today.
And when we consider who should play him in biographical films, perhaps the knowledge of his vitiligo and his long effort to hide it should point us in the right direction: under his black skin with white patches, he was a very sad human being. The actor who can do justice to that is the one to look for, irrespective of the colour of his own skin.
- This was first published on IOL Lifestyle