On poor representation of Ichthyosis – by people within the community

I often talk about the importance of good representation of Ichthyosis. I don’t mean only positive stories. I mean, when our stories are told by people with Ichthyosis, when headlines and articles aren’t sensationalised and stigmatising, and when there’s advocacy for the community as a whole.

This week I read a story of life with Ichthyosis that has affected me greatly. I am emotionally drained, angry and sad. I am truly worried about the harm it will do to our community, especially for young people who might read it in the hope of connection and self acceptance. What I read didn’t feature connection or self acceptance. There was so much internalised and external ableism. And sadly, Ichthyosis, Neurodivergency and Complex Mental Health was an excuse for bad behaviour. (The one thing I did take from reading this work was that it confirmed, yes I was treated terribly by those who wrote it.)

We need to see people with ichthyosis leading ordinary lives. Awards and lavish rewards don’t solve ableism for the individual or the wider community. And we need to raise the expectations that people have of us – by behaving well and taking accountability when we don’t. There’s room for many voices, and also a responsibility to help, not harm.You can’t claim to stand up for others when all you’re doing is standing up for yourself.

As a public figure, and a role model/mentor in the ichthyosis community, I believe it’s important to represent the community well, to offer support and hope for new parents of babies with ichthyosis as well as young people and adults, and also take accountability when you make mistakes and cause harm. I take my role very seriously, and I am so grateful for those who’ve done so much work to reduce barriers and stigma. I am continually learning, growing and improving, because I am passionate about hearing and amplifying many experiences of people with ichthyosis.

And I think that you can’t reject the term “disability” and shun advocacy as a public figure, while benefiting from the work so many disabled people have done to dismantle ableism and barriers. When you’re rewarded on the basis of your disability alone, it really is a product of low expectations.

I am thankful to my agent and editor for helping me craft Say Hello into a useful, respectful and community minded book that I am very proud of.

I have so many more thoughts that have kept me awake for hours. I feel the heaviness of vicarious trauma.
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Image: a selfie of a woman with red skin and short dark hair.