The real cost of being the token disabled person

We’ve all been there. An email lands in your inbox, or maybe it’s an Instagram DM. It’s from a school, university or local council and it sounds something like this: “We’d love to hear your story,” or “Your insights would be so valuable for our accessibility policy.”

At first glance, it sounds enticing. It feels like someone sees you. Like your experiences and the barriers you’ve faced might finally count for something. But then you ask them: “Is this a paid opportunity?" Cue the awkward silence.

Suddenly it’s: “Oh, we don’t have the budget for that,” “It’s just a quick survey,” or worse, they’re surprised that you even asked. 

And just like that, the invitation changes. It’s no longer about genuine inclusion. It’s about extracting your insight for free. 

Whether you’re talking to a classroom of students, giving advice to a local business or responding to a council consultation on footpaths and car parks — you’re giving your time, energy and emotional labour. Offering all of this for very little — if anything — in return feels demoralising.

I used to be a lot more generous with my time, but I’ve come to realise that sharing my story isn’t a casual favour. It’s work. Our insights aren’t just helpful, they’re vital to the people asking for our ‘services’. We should be respected and compensated the same way we treat professional consultants or policy advisors.

I once spoke at a school event where they wanted me to ‘inspire’ the students. I shared my story in a really positive way. They expected it to be a ‘downer’, but I turned it into something uplifting. But, I left wondering: was I invited for my insight or for their feel-good moment?

This kind of performative inclusion — we know it as “inspiration porn” — shows up everywhere. Schools invite disabled people to share our stories to motivate students. Councils seek feedback on accessibility policies with no intention (or budget) to properly compensate us. Businesses ask for advice on making venues more accessible, hoping we’ll just give it freely because you care.

The problem is worse when other disabled people ask you for your free labour. They should know better, yet the assumption is that we all owe our time and insight into every cause, no matter how exhausting, because we are part of the disabled community too. 

Many of us are already stretched thin between work commitments, sport, community and our personal lives. Not to mention navigating the daily logistics of accessibility in every space we enter. We’re already doing a lot! 

So no, we can’t drop everything and give feedback on your new car park design, or rush to offer advice on your inaccessible venue, or complete your survey because we’re disabled and you need a tick-box. 

But how do you respond to requests nicely? It’s happened to me enough times that I’ve got a few tips and tricks; here are a few of my go-to scripts.

• “Thanks for thinking of me. Just wondering, is this a paid opportunity?”
• “I’m happy to share my lived experience, but is there a budget to compensate for my time and insight?”
• “If payment isn’t possible, would you be able to offer a letter of reference, a voucher or future paid opportunities?”
• Or you could offer a 15-minute phone call to find out what they want and then let them know if you’re able to help that you’ll send an invoice for your work.

If organisations, councils, businesses or schools want real inclusion, they need to stop expecting everything for nothing. They need to make space for our expertise. They need to value our time. Because I’d much rather spend my time enjoying community and sports events with my whānau and friends at venues that are already accessible, not giving out free advice about them. 

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