I can’t believe it’s been nine years since I published A Living Label: An Inspirational Memoir & Guide. How time flies. A child born nine years ago is now in fourth grade. Wow!
What surprises me, though, is that one of the key issues I addressed in the book is still a problem today: the re-exploitation of individuals with lived experience for their stories, time, and expertise.
Let’s go back to the analogy of that nine-year-old. Can you imagine feeding a nine-year-old nothing but rice cereal? Exactly. That’s what it feels like when we expect lived experience experts to sustain themselves on symbolic gestures or token payments.
In Chapter 7 of A Living Label, I documented some of the challenges I faced as an individual with lived experience. My expertise was used to raise funds or enhance programs, yet I struggled silently to survive and raise a child. Sadly, this is not just my story. It is the reality for many others who have survived human trafficking, domestic violence, or other traumatic experiences, and who now share their lived expertise to help improve systems and services.
Even today, I find myself having to educate individuals and organizations about the importance of fair compensation for subject matter experts with lived experience. It’s disheartening to see people who claim to support survivor voices, promote trauma-informed practices, or ethically engage experts, still make the mistake of requesting their input without adequate pay.
Some people ride on survivors’ backs to enrich themselves and claim they are collaborating with them. Others receive large grants or speaking fees and toss survivors a token amount – just enough to make it look like they’re being paid.
Worse still, we see offers of gift cards or under-the-table cash payments. This is often done to avoid formal compensation that reflects the value of the lived experience professional’s contribution. These approaches are not ethical, and they certainly are not survivor-centered.
Let me ask: How would you feel if someone offered to pay you in a gift card for your time and expertise? Or gave you cash that barely covers your transportation or meal, while they profit or earn accolades? I’m still trying to figure out how to pay rent, electricity, phone, car note, and insurance with a gift card. If you know how, please enlighten me.
This is not just about money. It is about dignity, equity, and ethical engagement. If you are serious about working with individuals with lived experience, you must do it with respect, intention, and accountability. Ask questions. Learn. Offer contracts. Pay invoices on time.
To help bridge this gap in awareness, The Enitan Story, in collaboration with subject matter experts with lived experience, has developed a free training module titled Engaging SMEs with Lived Experience: Module 4. It is available on the organization’s website and is designed to help nonprofits, government agencies, and private institutions ethically engage individuals with lived experience in a mutually beneficial way.
I understand that many people have good intentions. But good intentions do not cancel out harmful practices. When the result is re-exploitation, it doesn’t matter what the original motive was.
One day, I may write about those who technically “pay” lived experience experts, but in ways that are traumatizing, condescending, or triggering. Because yes, that happens too. Some payments come with emotional whips.
I will stop here for now. Until next time.
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