It usually starts with a warm email. Someone has heard about your work, admires what you are doing, and would love to have you speak, advise, contribute. The ask feels like recognition. And for a moment, it is. Until you realise being seen and being valued are not the same thing.
I want to talk about something that has been sitting with me for years. And if I am being honest, it has taken me a while to find the courage to say it out loud. But here we are. In recent times, requests have been coming in more frequently. Invitations to speak to students, participate in research, advise on programme design, share lived experience and expertise. Some I have said yes to. Some I have turned down. And with each one, the same question returns — how should an OPD leader, a disability justice activist, or any person with a disability be compensated when these requests land at their door?
The Pattern
A professor reached out recently and asked me to speak to their class about climate change and its disproportionate impact on persons with albinism in sub-Saharan Africa. I was excited. These are the conversations I live for. But because it was a university engagement, and because it required me to be awake at 2am to bridge the time zone, I asked a simple question — would there be any compensation for my time? I did not quote a figure. I did not make demands. I simply asked whether my time would be recognised.
The response came back promptly. Unfortunately, the speaker slots had already been filled. Perhaps next time. I will never know whether that was true or whether my question was the reason the door closed. What I do know is that the ask itself — the mere act of naming my value — was enough to end the conversation. And this is the pattern.
Organisations approach OPDs and disability justice activists for knowledge, insight, and lived experience that directly informs programme design, research direction, and funding decisions. The information is extracted. The programmes get built. The resources get released. And the person who provided the knowledge that made all of it possible walks away with a handshake and a promise that when funding comes through, you will be the first we call. Sometimes that promise is kept. But rarely.
“You say we do not have the capacity to receive funding. And yet you are here, at our door, asking for the knowledge and lived experience that will shape your programme. That is not a capacity gap. That is a power imbalance dressed up as one.”
The Fair Funding Gap
I am part of the Fair Funding Campaign, a campaign that exists because OPD leaders are driving real, lasting change while being systematically shut out of the resources that would let them go further. Disabled people are 16% of the world’s population. Yet only 3% of human rights funding reaches them. The reason offered, quietly and repeatedly, is that OPDs lack the capacity to receive it. So let me hold these two things side by side. You say we do not have the capacity to receive funding. And yet you are here, at our door, asking for the knowledge and lived experience that will shape your programme. You are telling us we cannot implement while simultaneously relying on us to think, to advise, to inform, and to guide.
And let me be clear on something else. No OPD, and no individual, starts with full capacity. Capacity is built over time, with resources and opportunity. The more honest conversation is not about whether capacity exists — it is about whether anyone is willing to invest in strengthening it. Because every time someone’s knowledge is taken without compensation, that is one less resource they have to grow.
What We Can Actually Do
The first thing is simple but rare — ask. Genuinely ask. Before you reach out for someone’s time and expertise, ask what it would cost them to show up for this piece of work. Have that conversation honestly and openly. If you meet in the middle, everyone leaves feeling respected. That matters more than most people admit. If there truly is no budget — and sometimes there genuinely is not — then be honest about that upfront. Do not let people find out after they have already invested their time. And tell them clearly how their contribution will be used.
And to OPDs who are also guilty of this within their own structures — because it happens — the least you can do is stay consistently present with your members. Do not disappear between moments of need. Do not reach out only when you need something extracted. Relationships built only on extraction, even within a movement, do not hold.
What This Is Really About
This is not fundamentally a conversation about money. It is a conversation about being seen. About having your expertise recognised as expertise, not as a goodwill contribution from someone lucky enough to be invited into the room. The knowledge that disability justice activists and OPD leaders carry has been built over years. It has cost time, commitment, and a willingness to keep growing even when no one was paying attention. That deserves to be treated accordingly.
So the question I leave with you is not just for the organisations and the researchers and the professors. It is for all of us in this movement. Are we building a space where everyone’s contribution is valued, or are we simply redistributing who gets taken for granted? As always, I am grateful you are here, and I am glad you are thinking with me.
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