Black Movement Leaders: Lost & Found


As some of us get caught up in lamenting the whiteness of our movement, we are actively losing the stories of Black leaders who are sometimes invisibly standing at our sides… Or who’ve thrown up their hands and walked away because they’re sick of not being seen… Or whose stories can’t be lost because they were never found in the first place.

For close to a decade and up until around about 2018, I was on the Massachusetts Certified Peer Specialist (CPS) training team. Setting aside (for now) the various complexities and concerns I and many others have about Peer Specialist roles and the programs that certify them, it was an interesting experience for a variety of reasons. A year or two in, I was asked to begin teaching the module called “The Shoulders Upon Which We Stand.”

It was a lofty title for the lofty topic of our movement’s* history, and the people who had built and contributed to it before we came along. It was among my favorite modules to teach. I loved bringing in old copies of Madness Network News, Dendron, State and Mind, and Phoenix Rising for people to thumb through at breaks. And, I loved even more watching for which students became energized by these documents (my people!), and who was horrified that I was sharing material that was so comparatively bold and controversial when lined up against today’s oft watered down “peer support” brand of activism.

By the time I left the team, I and my co-trainers had it set up so that each student would be assigned the name of a movement figure before class even started. Their mission was to arrive to class having looked that person up and being prepared to talk about what they learned with others in the room. The overarching goal (among a couple others) was to ensure that each person came away from the session knowing at least a few more historical folks than they arrived knowing that day; To know that the work that they were doing didn’t come out of nowhere.

However, I’m embarrassed to think back about how few Black people were included. In fact, I recall feeling at such a relative loss to come up with more than a couple non-white movement leaders’ names that I changed things up a bit, and included Black Lives Matter founders. To justify inclusion of people who did not openly identify as having psychiatric histories and who weren’t really doing their activism in the psychiatric realm, I spoke to how different movements impact one another. While that’s certainly true, I should have and could have done so much better.

But, I didn’t know where to look. The people around me who were speaking about history were also speaking mostly about white people—often the same few white people over and over and over again. When Black people showed up, they were frequently appearing only in group photos with the white people who were the true focus, and mentioned as asides. In some instances, it also appeared that we were replicating what I’ve seen happen with Martin Luther King, Jr. in our nation at large: Find one or two Black people (preferably the most “palatable” ones, or who can at least be molded into someone widely “palatable” posthumously) and invite them and/or cite them repeatedly as proof of “diversity.”

Without doing the work I should have done, I continued on self-righteously. More than once, I’ve been one of those who have complained that Mad in America needs to do better in bringing in non-white writers. I gave the filmmakers who produced How to Touch a Hot Stove hell for not including a single interview with a Black or Brown person in spite of their being from New York City. I’ve spoken frequently about how white our movement skews. But in some ways, who was I to speak? As a white person, it was easy for me to point fingers and say, “You’re not doing enough,” but how was I upholding my own responsibility to be a part of the change? In truth, I wasn’t.

Distracted by the pandemic and so many other things, I hadn’t thought too much about these points recently until, on December 11, Dana Smith reached out to me and said, “Looking to do something different for Black History Month.” Dana is a Pastor, and Executive Director of New Life II, the first Black-run, faith-based, peer-run community organization in Connecticut. We’d been looking for ways to collaborate, and here was an opportunity. Together, we decided we would build an exhibit of Black movement leaders that could be displayed in our respective communities. The only problem? While I knew of several more people than I had back in my CPS days, the names I held in my head an exhibit did not make.

So, I reached out to friend and colleague, Chackupurackal (Chacku) Mathai for his thoughts and support. The project happened to align with one he and Celia Brown had been discussing before her death toward the end of 2022. Together, we were all excited about the possibilities. Next steps? Get to work!

It’s now two months later, and I feel a mix of humbled, saddened, urgent, and elated. I never could have anticipated how much I’d learn, who I’d “meet” (or get to know in new ways), and how this project would impact others around me. How had I missed all these people? And of the people I already knew, how had I missed so many of the stories they held?

How could I, for example, not have known about Vanessa Jackson, and “In Our Own Voice: African-America Stories of Oppression, Survival and Recovery in Mental Health Systems” or “Separate and Unequal: The Legacy of Racially Segregated Hospitals”? Vanessa wrote both these pieces into existence around two decades ago!

I learned about Jennie Fulgham from the latter piece. Jennie had been held in Central State Hospital in Virginia in the 1940s. While her stay was only 30 days, it had lasting impact on many facets of her life, and was something she never forgot. Though she moved to New York for some years to work as a phone operator, she returned in the 1970’s to co-create the Zuni Federation for Mental Health on three acres of land with another ex-patient. The intent was to create a free retreat space for others with psychiatric histories, and to push back on the system’s focus on “mental illness.” Although the Crisis Hostel (New York, 1990s) is sometimes credited with being an early move toward “peer respite,” and Stepping Stones (New Hampshire, 1995) is widely understood to be the first official one, I think Jennie’s Zuni Federation may actually have been it. (Interestingly, one of her children—of whom she lost permanent custody following her hospitalization—wrote an article about her in 2013 that refers to her as “quite a woman,” but mentions none of this history at all.)

I also read about Ben Riley, a young man incarcerated in the 1950’s at Rusk State Hospital in Texas and who led an uprising of 80 patients. They demanded an end to beatings, and equal access to food, showers, and freedom of movement; The same as what white patients were afforded. They didn’t let up until they believed they’d satisfactorily negotiated their terms some six hours later. Unfortunately, newspapers suggest that Ben earned seclusion, forced drugging, and shock “treatments” as the real end result. There is no record of what became of him after that. We’ll probably never know.

I also learned so much about those who are still living. For example, I learned that Yvonne Smith—who I’ve known superficially for several years—used to break into the State Hospital in her area to hand out recovery brochures. (This is my absolute favorite story I heard throughout this whole project, and I’ve vowed to share it as far and wide as I can.) I found out that Denise Camp—who I met so many years ago at a gathering at the Substance Abuse and Mental Health Services Administration (SAMHSA) and then saw again when she attended a training I was facilitating in Maryland—was actually the first Black graduate from Rensselaer Polytechnic institute’s Biomedical Engineering department, and that she had a whole career as an engineer before finding her way to this work. And Denise introduced me to Wali Mutazammil, one of the first Black people to become an Advanced Level Wellness Recovery Action Planning (WRAP) facilitator and the first to bring WRAP to Africa. (Wali and I are now Facebook friends, and he’s keeping me abreast of his current travels through Ghana, parts of Malaysia, and beyond.)

I’ve learned so much, and yet there’s still so much to be learned. But, perhaps the most important lesson was this: Our movement isn’t nearly as skewed white as I thought, unless the whole movement is to be defined by its platforms (which should never be the case).

Now, this project is not without its flaws. One person we’d hoped to include in the exhibit refused participation because the project is rooted in white supremacy. In other words, in a society that was fully just, no exhibit would need to be race-specific (never mind further legitimizing the social construct that is race overall) because everyone would be recognized and lifted up together, their recognition based on accomplishments without regard for identities or skin colors. No counterbalance to the default flood of white voices would be needed.

This is undeniably true, and yet it’s just not where we are at. In addition to learning people’s stories, one of the other things that perhaps struck me hardest throughout this process is when one of my co-collaborators confessed he’d been moved to tears by all the names we were gathering and how many of them he didn’t know. He shared that he previously had only been told of the white movement figures who had supposedly paved the way forward for him and so many others.

Making these spaces is imperfect, but I believe it makes a difference, the true impact of which will only be felt if we all take on carrying these names and stories forward beyond this exhibit and into our day-to-days.

I hope you will join us in doing just that.

On-line exhibit:

In-person exhibit in Southeast MA: Tuesday, February 21 through Friday, February 24, 2023 at the Gallery at the Co-Creative Center, 137 Union Street, New Bedford (Open to the public from 10am to 4pm or by appointment)

In-person exhibit in Western MA: Tuesday, February 21 through February 28, 2023 at La Brega, 199 High Street, Holyoke (Open to the public Monday through Thursday from 12pm to 4pm)

In-person exhibit in CT: Tuesday, February 21 through February 28, 2023 and beyond until further notice at New Life II, 117 West Main Street, New Britain (Open to the public Monday through Friday, 9:30am to 5pm)


*“Movement” here refers to several overlapping movements of people with psychiatric histories including but not limited to the psychiatric survivor, Consumer/Survivor/Ex-patient (C/S/X), recovery, disability justice, civil and human rights, and peer support movements.



Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.


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  1. Thank you for this Sera. I knew a few people who knew Malidoma, it’s nice to see him recognized here. The story of Ben Riley was particularly upsetting to me, he sounds very brave to have stood up to such harsh oppression. I hope one day we will find out what became of him.

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      • Oh I think there’s a clue to what might have happened to Ben Riley in the article you post below Sera.

        “Dr Bethea said he had ordered Riley segregated from the other patients. He will be confined in a 24 hour solitary lockup and will undergo immediately a series of intensive shock and drug treatments”

        So I guess it would be fair to assume he walked free to live a happy life as an accountant, with a wife and three kids in a two story modest home in the suburbs of Dallas?

        “Psychiatric expert testimony; mendacity masquerading as medicine”? (As Szasz once said)

        Judge, jury and executioner (or as close as the law will allow minus Euthanasia laws and the ability to “edit” legal narratives post hoc).

        I mean do we really need to read between the lines as to what was to be done with Mr Riley? Dr was going to kill him, and we weren’t even given the opportunity to get tickets.

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          • I need to be a little careful at the moment.

            I think it important that we keep alive the names of some of these ‘butchers’ who are impersonating doctors though. At some point they may actually be held to account….. perhaps a Jiang Qing will come to power and seek to have them shown the beauty of the saying of Confucius about “do unto others as you would have them do unto you”.

            Wouldn’t they look silly with signs round their necks saying “Fraud” or “Slanderer” before being ‘reeducated’ and “will undergo immediately a series of intensive shock and drug treatments”?

            “If you look at some of the other stories in the exhibit, people experienced some pretty horrific things in the psych system and still came out the other end.”

            Not many of them ‘better’ for the experience though right? Though the State doesn’t keep data on their success/failure rate, merely “edits” legal narratives to suit their purposes.

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