July is Disability Pride Month. I’ll be writing more about Disability Pride throughout. What does a photo of my omelette have to do with Disability Pride?, you ask.
A couple of months ago I was out with friends, and a woman came up to me to tell me she too has Ichthyosis and my book has helped her so much. I saw how nervous she was to say hello. We exchanged contact details then, and today we met up properly. We chatted non stop for two hours, over brunch – we both had omelettes.
Even though we have different types of Ichthyosis, we have a shared understanding of the difficulty of having a rare, severe skin condition. Of course we talked about our very similar experiences of living with Ichthyosis – especially how liberating it’s been to shake the shame around our skin. But we talked about so much more – we share a passion for live music.
My new friend is a few years older than me. She and I both attended the same hospital when we were children, and we were surprised our paths never crossed. Even though it was pre-internet, we wished our medical team could have connected us, like the connections I make with adults with ichthyosis and parents of kids with ichthyosis both online and through the hospital today. It would have been so incredible to have a friend with Ichthyosis as a child, to feel less alone.
For me, Disability Pride is connection, culture and identity. It’s so very important to connect with other people who have the same rare diagnosis, as well as with other disabled people with different diagnoses. It’s been life changing for me – to share common experiences of ableism, shame, treatment and happiness. And it’s an utter privilege to hear people tell me that my words have helped them feel more confident and less alone.
I’m so lucky that Ichthyosis, and identifying as disabled, has connected me with other wonderful people who also have Ichthyosis or other diagnoses – many of whom are now dear friends. What sets me apart from most people brings me connections and opportunities; and for that I’m grateful.