You don’t get to speak for me

by Veronica on August 25, 2014

in Ehlers Danlos Syndrome, My body is broken.

Recently I saw a callout for writers to come forward and express interest in doing some sponsored work on a variety of topics. One of those topics was disability, so I put my hand up.

Skimming through the comments briefly, I saw a number of support workers put their hands up to talk about disability as well and I immediately got shitty.

The thing is, unless you have a disability, or possibly are the parent of a severely disabled kid, you need to shut up. You aren’t the minority group being spoken about. Your job is merely to shut up and listen.

In the wake of the Federal changes to how the disability pension was going to be funded for young people, it seemed everyone had an opinion and they were willing to shout it from the rooftops.

Social workers came forward. Disability support workers. Centrelink workers. That nosy old gossip at the post office. EVERYONE had an opinion.

“I work with these people and really, this makes it so much harder for them.”

“I see these people every day and blah blech blah.”

“There are thousands of these people routing the system and it needs to stop!”

These people.

These people.

I am one of these people and it offends me when people who don’t know what disability is like decide to speak on my behalf. I have a voice and I can use it for myself, thanks.

It took a long time to come to terms with my disability. The knowledge that slowly my body will start to fail me more and more often is a bitter pill to swallow some days, but I’m one of the lucky ones – I get to put things in place now in order to make my life in five years easier. I have a degenerative condition, I know about it, and I have accepted that.

I am also the parent of disabled children. I know how hard it is sometimes to step back and let my children speak for themselves – but I am also living in a body very similar to theirs, so I can advocate from the first person perspective of knowing exactly what helps and what doesn’t. And when their experience is different to mine, I shut up and listen to them.

It’s the same across the board. We need to let people advocate for themselves and stop trying to shout over the top of them because for whatever reason, we believe we know better.

Here’s the thing: I am disabled. Not stupid. My joints don’t work, but my brain does.

Disability is a complex and nuanced thing. There are as many different experiences as there are diagnoses and so it’s important that we listen to the people who know what they’re talking about. As much as that social worker believes she understands how disabled people live, work, and think, unless she also has a disability, she can’t explain from anything except a second hand perspective. And as long as I can talk, I firmly FIRMLY believe that I get to talk for myself.

Activism is hard work and it often leaves me curled up in an exhausted ball resembling nothing so much as a soggy cardboard box. But eventually I have to stand up and point out that I am disabled and you don’t get to speak for me unless you are disabled too.

We have strong amazing voices in our disabled community. It’s important that everyone else shuts up and lets the people who know what they’re on about speak.


Michelle Roger August 25, 2014 at 3:45 pm

This. So much this. I read that too and had the same reaction. I am tired of others trying to speak for me. So many articulate people in the disability community why do others keep saying they speak for us. Stop claiming and coopting my experience!

Sherrie Beaver August 25, 2014 at 7:28 pm

You’ve nailed it. I, too, was annoyed. I may be deaf but I am more than capable of speaking for myself, and I do not like it when others speak for me.

Fiona August 25, 2014 at 9:07 pm

I struggle with how much or how to go about it when the people I’m advocating for have a communication disability.

Happy Speech Pathology week btw 😉

Stimey August 25, 2014 at 11:08 pm


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