Anthropology built much of its early authority by observing people like me (folks who deviated from “the norm”). It’s now the lens through which I observe the rooms I’m hired to change.
What I want to write about today isn’t ableism itself. It’s the work of being a disabled person in rooms where ableism is the air, and the question I’ve been sitting with lately:
What if the most exhausting part of this work isn’t the ableism — but the labour of making it legible to people who don’t experience it?
I’ve been sitting with that question for a while now. Not solving it. Just sitting.
The double shift
Anthropology trained me to move between worlds. To notice what a culture takes for granted. To name the water the fish are swimming in. To sit with a community long enough that the obvious-to-them becomes visible-to-me, and then to carry that visibility somewhere it can do some good.
What the discipline didn’t tell me — what it couldn’t, because it was built largely by people who weren’t doing this — is what happens when one of the worlds you’re translating is your own.
When I engage with an organisation, I’m doing two jobs at once. I’m the consultant: reading the room, mapping the politics, listening for what isn’t being said, locating the leverage points where a Disability Inclusion Action Plan might actually shift something rather than just sit on a shared drive. That’s the work I’m paid for. That’s the work I’m good at.
But I’m also, simultaneously, a disabled person in a room that wasn’t built with me in mind. And the first thing I notice is always the language. Not dramatic language — nobody says anything obviously wrong. It’s the quieter stuff. Whether disability is spoken about as a problem to be managed or a reality to be designed for. Whether the people in the room are comfortable with the word “disability”, sound like they’ve actually listened to a disabled person, or whether they’re performing a familiarity they don’t quite have.
I’m reading all of it, in real time, while also doing the job I’m there to do.
That second shift is invisible. It doesn’t appear on the invoice. And it is, I think, the thing that wears.
What translation actually costs
When people talk about lived experience as a professional asset, they tend to frame it as bonus content. You bring something extra to the table. And it’s true — I do. But the framing skips over the cost.
Translation isn’t free. Every time I render an experience of ableism into language that a non-disabled audience can metabolise, I’m doing something to that experience. Smoothing it. Shaping it. Removing the edges that would make it sit uncomfortably in a boardroom. Choosing which parts to say plainly and which parts to soften, because a room can only hear so much before it stops hearing at all.
That choice — what to soften, what to keep sharp — is itself a form of work. Intellectual work. Emotional work. And it’s rarely visible, because the whole point of doing it well is that it looks effortless.
The exhaustion isn’t from ableism itself. It’s from the constant act of making the ableism palatable enough that it can be heard without the room becoming defensive enough to stop listening.
When a non-disabled colleague translates ableism for an audience, they get to put it down at the end of the day. I don’t.
The reframe
We tend to talk about ableism as something that happens to disabled people. A barrier. A bias. A thing we encounter and navigate.
But the work of noticing ableism — sitting with assumptions, asking uncomfortable questions — has to happen somewhere. When it hasn’t happened inside an organisation, it finds its way to the disabled person in the room. We translate, soften, explain, contextualise, model, and absorb.
This isn’t anyone’s fault. Most of the time, it happens because nobody has thought to do it any other way. But once you can see the pattern, the question becomes: what would it look like to build that muscle elsewhere, too?
That is not to say disabled people should not be leading this work. We should. Best practice in Australia is clear — disability inclusion work should be disability led. A non-disabled person leading this work is not just a missed opportunity. It is a practice that needs to be challenged.
What I am asking of non-disabled colleagues is not to lead. It is to do preparatory work, so the disabled person in the room is not starting from scratch every time they walk through the door.
Sitting with it
I don’t have a tidy ending for this. That’s part of what I mean by sitting with.
I’m not going to stop doing the work. The work matters. The plans I help build, the governance I help shape, the rooms I help shift — those things are real, and they make a difference, and I am proud of them.
What I want to offer is the invitation to notice. To know that the second shift exists. To recognise it when it’s happening — in your organisation, in your meetings, in your work and to be curious about it rather than uncomfortable.
Some of the most useful conversations I have with clients start with someone saying, “I hadn’t thought about it that way before.”
That’s the shift. That’s the work I’m here for.
