A free course

Being Valued, Not Just Visible

Being asked to share your story isn't the same as being valued for it. This course gives you language for the difference, and tools for asking to be paid, accommodated, and heard as more than a guest appearance.

Free for anyone with lived experience

Section One

The difference between being included and being used

They wanted my story, not my opinion.

Being asked to speak, share your story, or "represent" lived experience can feel like recognition. Sometimes it is. Often, it's something else:

Tokenism Being included for appearance, without real decision-making power, fair compensation, or follow-through on what you actually said.

A clear sign of tokenism: you're invited to the room, but not to the decision. You share your story, and it ends there: no input on what happens next, no update on whether anything changed, no real seat at the table where choices get made.

This isn't always intentional

Sometimes organizations genuinely believe that including someone's voice is the inclusion, without realizing that voice without power is still exclusion, just better-dressed. Naming this clearly matters, because tokenism often gets defended as generosity ("we gave you a platform"). A platform with no power attached is not the same as inclusion.

Quick check-in

Not a test, just a chance to notice what shifted.

1. Tokenism is best described as:

2. A clear sign of tokenism is:

Case study: The panel that went nowhere

The situation Marcus was invited to share his story on a city panel about homelessness policy. The room applauded. Six months later, the policy discussed that day passed with no changes reflecting anything he'd said.
Reading it through this lens Marcus's presence made the panel look inclusive. But inclusion that doesn't reach the actual decision is visibility without value, and noticing that distinction is the first step in asking for something different next time.

Section Two

What fair value actually looks like

What would actually make this fair?

If tokenism is the problem, fair value is the standard to measure against. It usually includes four concrete things:

Compensation Payment for your time and expertise, the same way any consultant or speaker would be paid. Lived experience is expertise.
Decision-making input A real voice in what happens with the information you share, not just a slot on an agenda.
Credit Being named and acknowledged for your contribution, not folded anonymously into "community feedback" while others take credit for the resulting work.
Choice in how your story is used Knowing where it will appear, who will see it, and having the right to say no to uses you didn't agree to.

This isn't an extravagant ask

These are the baseline most professional contributors expect by default. The difference is that lived-experience contributors are often not assumed to deserve that same baseline.

Quick check-in

Not a test, just a chance to notice what shifted.

1. Which of the following is NOT one of the four markers of fair value covered here?

2. "Choice in how your story is used" means:

Case study: Asking for the baseline

The situation Renata was invited to share her story for a grant application. She asked: "What's the budget for compensating contributors, and will I see the final draft before it's submitted?"
Reading it through this lens Neither question was confrontational: both were the same baseline any paid consultant would ask. The organization hadn't budgeted for compensation, but Renata's question prompted them to add it for future contributors, not just her.

Section Three

The harm in exploitation

It cost me more than they realized.

Sharing your story isn't neutral labor. Recounting a hard experience takes emotional energy, can reopen difficult feelings, and takes real time to prepare and deliver well, even when it looks effortless from the outside.

When organizations ask for that labor for free, often using language like "exposure," "giving back," or "raising awareness", they're treating a real cost to you as if it were no cost at all, while they receive something real in return: funding, credibility, content, or a finished grant application.

Exploitation Not generosity, even when no one involved intends harm. The harm isn't always in the asking. It's in the asking without acknowledging the cost, and without offering anything in return that reflects it.

Why naming this as harm matters

"It's just a request" language minimizes something that has a real, felt cost to the person doing it. Naming it as harm, not just inconvenience, is what makes the conversation honest.

Quick check-in

Not a test, just a chance to notice what shifted.

1. Sharing your story for an organization's benefit:

2. Asking for free storytelling labor using language like "exposure" or "raising awareness," without compensation:

Case study: "Awareness" with a price tag attached

The situation A nonprofit asked Devon to write a personal essay for their annual fundraising campaign, framed as "helping raise awareness." The campaign raised over $40,000. Devon was thanked publicly, but not paid.
Reading it through this lens The organization received a direct financial benefit from Devon's labor. "Raising awareness" described the effect of his work, but didn't change the fact that his story functioned as the fundraising content: work that, for anyone else, would have been paid.

Section Four

Asking to be paid for your work, in practice

How do I even bring this up?

Asking to be paid doesn't require confrontation. It requires the same plain, specific language this whole course has been building toward.

Naming your rate

"My rate for speaking engagements is [amount]. Is that within your budget?"

Asking what budget exists, without assuming there isn't one

"What's the budget for compensating contributors with lived experience on this project?"

Responding when offered "exposure" instead of payment

"I understand the exposure could be valuable, but I'm not able to take on paid work in exchange for visibility alone. Is there a way to compensate this directly?"

Responding when told there's "no budget"

"I understand budget can be tight. Could this be revisited for future contributors, or is there a smaller honorarium possible now?"

You're allowed to ask plainly. A reasonable organization will respect the question; an organization that reacts badly to a fair pay request is telling you something useful about how it values lived experience.

Quick check-in

Not a test, just a chance to notice what shifted.

1. When asking what budget exists for compensating contributors, the right tone is:

2. If an organization reacts badly to a fair pay request:

Case study: The ask that worked

The situation Yusuf was asked to consult on a training curriculum. Instead of assuming there was no budget, he asked directly what the compensation budget was.
Reading it through this lens The organization had simply never been asked before, and had budget available they hadn't allocated. Yusuf's plain, unapologetic question got him paid for work that, in the past, the organization had received for free from others who never asked.

Section Five

Remote work and accessibility: when "we welcome everyone" doesn't mean it

They said anyone could join, except me, apparently.

Many organizations describe themselves as inclusive while structuring participation in ways that quietly exclude disabled people: in-person-only meetings, inaccessible video platforms, rigid scheduling with no flexibility, or materials with no accommodation for vision, hearing, or cognitive access needs.

Exclusion through work design

This is exclusion through work design, not necessarily through anyone's stated intent. An organization can genuinely want disabled people's input and still build every actual opportunity to give it in a way that excludes them.

Remote and flexible options Aren't a special favor. For many disabled people, they're the difference between being able to participate at all and being structurally unable to, regardless of how much they want to contribute.
Accessible materials (captioning, screen-reader-compatible documents, plain-language versions) aren't extra polish. They're the difference between information actually reaching someone and technically existing where they can't access it.

The gap isn't in disabled people's capability to contribute. It's in organizations building participation around a single, narrow assumption of who's giving input.

Quick check-in

Not a test, just a chance to notice what shifted.

1. An organization that says "everyone is welcome" but only holds in-person meetings is:

2. Accessible materials like captioning or screen-reader-compatible documents are:

Case study: "We didn't think about it"

The situation A coalition meeting series was advertised as open to all advocates with lived experience. All meetings were in-person, in a building with no elevator. A wheelchair user who wanted to join couldn't attend a single session.
Reading it through this lens No one intended to exclude her, but intent didn't change the outcome. Once she raised it, the coalition added a video option for every meeting going forward. The fix was simple; the gap had simply never been noticed by anyone it didn't personally affect.

Section Six

You get to set the terms of your own participation

My story is mine to give, or not.

You don't owe access to your story, your time, or your presence without real value in return. Saying no to an unpaid request, asking for accommodations, or naming tokenism when you see it are not acts of difficulty. They're you exercising the same standards any professional would hold as ordinary.

A closing thought

Disability doesn't disqualify you from full participation. Inflexible work design does, and that's a design problem the organization can fix, not a deficiency in you. You are allowed to ask for fair pay, accessible participation, real decision-making input, and credit, every time, not just when it feels safe to ask. The goal isn't to make you combative. It's to make sure the terms of your participation are actually yours to set, rather than something you discover after the fact you never agreed to.

Quick check-in

Not a test, just a chance to notice what shifted.

1. Setting the terms of your own participation means:

Your certificate of completion

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