Absolutely exhausted and disgusted at the AllySHIT I’ve seen – and been on the receiving end of – today.

My photo – along with many others peoples’ – was misused (without my consent) in an inspiration porn video about facial difference. Some of the text above the video mentioned how brave we are for publicly exposing our faces,, and that it’s ok for people to be confronted by our facial differences. After I asked for the video to be removed – and thanks to others who commented – the video was removed. But it had been on YouTube and Facebook for over a year. Luckily it had such few views.

And when I commented on a post about facial difference as a book week costume, saying that disability appropriation is hurtful and harmful, I was told to respect the way the non disabled person advocates for people with facial differences. That post was taken down, but not without a lot of defensiveness.

The person who made these posts has attached themselves to facial difference advocacy with no lived experience. Lived experience isn’t about the proximity you have to a disabled person, by the way.

No, I will not respect this form of advocacy, and I won’t be quiet.

Facial difference is not a costume for us, and those dressing up as a person with a facial difference can take their costume off at the end of the day, and be free from the mocking, staring and discrimination. That’s a privilege that me and others who have facial differences, skin conditions and who are disabled doesn’t have. Disability appropriation (and cultural and racial appropriation) is very hurtful and harmful.

Non disabled people need to stop speaking over disabled people, stop centring themselves in disability rights and media, listen to us and stop getting defensive when we call out their AllySHIT, and stop appropriating our identity and culture for awareness purposes.

I’ve got a lot more to say on this topic. This is just the start. I will no longer be silent, polite to make others comfortable, or call this out privately- especially when it’s done publicly.

My face will not be used in your AllySHIT.

No devil’s advocates please.

More on how to be a good ally here. 
Buy me a drink here.