Dear Mum: Love, your disabled child

Dear Mum,

It’s me, your disabled child.

We have been through a lot together. A traumatic birth, rejection on my first day of school and you’ve been my advocate fighting for my inclusion and rights in every ableist system. But we need to talk about those photos of me in the hospital that you keep posting on Facebook! 

You know the ones of me in a gown with tubes out my nose? Or when we made that emergency trip to the ER after a terrible night of falling ill? Or the ones of me freshly out from surgery? Yay I made it out I guess, but I don’t really want photos of me in my most vulnerable state on the internet forever. Why do you keep shouting about me all over social media for all your friends to see?! Last week Aunty Barbara asked me how my infection was healing up. That was not a conversation I wanted to have with Aunty Barbara.

I feel the pride you have for my achievements and your advocacy has made me the person I am today. But there’s only so many posed photos of me holding a certificate you can post on Facebook. And Aunty Barbara is learning more about my life than I’d like her to know. By posting every tiny achievement, it almost minimises my actual achievements. 

Mum, I want you to be proud of me. Deeply, viscerally proud. But pride looks different for me than it does for others. Other people feel proud – inspired, even – when a disabled young person like me gets out of bed in the morning. When we get a certificate at school. But I want you to know that I feel proud most when I drink wine through a straw without feeling embarrassed. I feel proud when I’ve processed my internalised ableism enough to hang out with my crip friends on a Saturday night in public. And I would love it if you could celebrate those moments with me too!

If I can buy a house in Auckland in the current property market climate, you have my permission to go all out about it online. If I win a Nobel Prize, go ahead and announce it on a billboard. But people get it by now - I’m not a complete failure and it’s not a competition on who has the most successful disabled child.

I acknowledge you’ve also had your own journey with disability. You’ve cried until your eyes hurt and had sleepless nights worrying about my future. You’ve also had to deal with judgement and stigma of being a parent of a disabled child. I understand that maybe your social media posts are a way to validate your emotions. 

Please know that I love you and I appreciate all your feistiness on my behalf. But it’s now time to put up some healthy boundaries and for me to set my own goals. 

Let’s tone down the Facebook posts and figure out together how we can share my story in a way that’s dignified.

With love,

Your disabled child