Celia Brown, R.I.P.: Psychiatric Survivor, Pioneer, and Global Activist for Change

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Celia Brown, a psychiatric survivor and activist who was revered — even beloved — for her foundational and ongoing efforts in mental health advocacy and the peer movement, has died after a battle with cancer.

Known for her warmth and decency, her activism and resolve, Brown is being mourned across many overlapping communities in mental health, human rights, civil rights, and disabilities activism. Her decades of work included campaigning for human rights, leading MindFreedom International, and working as a pioneering on-staff peer-support specialist for the New York State Office of Mental Health.

She was also a longstanding and deeply influential advocate for informed consent and an outspoken international critic of forced treatment. Her advocacy and activism, born and bred in New York, took her from New Zealand to Finland to Ghana, where her family had roots; in her work for NYS OMH, she was key in developing the Peer Specialist Civil Service and facilitated training on varied approaches to recovery. She also served as MindFreedom’s chief representative to the United Nations.

In a Facebook post honoring her sister, Jocelyn Brown described her as endlessly giving and always concerned for others. “She didn’t have a selfish bone in her body. . . . Celia was a pillar of strength,” she wrote, “and while many of her constituents depended on her to lead, to make power moves and to advocate for the disenfranchised, her physical state was ‘itty-bitty’ in the grand scheme of things. She stayed on course and continued to help, support, lobby and protest injustices in the mental health field.”

She thanked the community for its outpouring of tributes and expressions of grief from those who knew and worked with Brown.

“Celia was such a soft spoken beacon of hope for so many in NY and around the world, it’s hard to overstate the impact she had and the void she is leaving behind,” said Peter Stastny via email. A psychiatrist and advocate for change, he met Brown in the 1980s at the Bronx Psychiatric Center, where, working as a groundbreaking peer specialist, she was part of a team that visited the state’s outpatient clinics in an effort to inform and transform mental health services around the state.

A founder with Stastny of the International Network towards Alternatives and Recovery (or, as it’s now rendered, Rights-Based Supports), Brown recently helped organize a webinar on the challenges of peer work within the existing system. “I cannot believe that we will never do anything together again on this earth,” he wrote. “Many others will honor her vast accomplishments, but I can only say that she was a shining light in my life opening many doors to understanding the people we are meant to support and many opportunities for productive collaborations. Thank you, Celia, for all you gave to us with your heart and soul.”

Others shared similar memories of Brown, describing a woman whose humility and approachability belied the power of her commitment to change. Brown labored equally as both civil servant and activist, each role informing the other.

“You can see photos of her standing up and convening a conference, and in the same breath you can see photos of her with a bullhorn in the street,” said Harvey Rosenthal, head of the New York Association of Psychiatric Rehabilitation Services. “She could sit at the table. She could stand at the dais… She could certainly speak some powerful statements that brought a lot of people out — and in particular, I would say, for recovery, for rights, for racial equity. And peer support.”

Rosenthal, an advocate and provider in long-term recovery, first met Brown in the early 1990s while she was working for OMH. “She crossed the line so seamlessly between being a regional specialist for the Office of Mental Health, but also a profoundly grassroots, change-making, truth-telling advocate. But you couldn’t tell the difference.”

Brown’s lifelong work spanned multiple corners of the globe and diverse realms of rights campaigning, delivering talks on a range of topics involving recovery, peer counseling, and cultural issues. A founding member of the National People of Color/Consumer Survivor Network, in 2014 she helped create Surviving Race: The intersection of Injustice, Disability and Human Rights following the police killing of 18-year-old Michael Brown and the subsequent start of the Black Lives Matter movement.

Keris Myrick, a former head of the National Alliance on Mental Illness and a longtime presence in the peer community,  described her “tenacious fight for rights and recovery, particularly for people of color. For me personally, when the C/S/X/P movement” —  short for the consumer/psychiatric survivor/ex-patient movement  — “wasn’t welcoming or understanding of my journey as it is placed in a Black cultural context, and me as a large Black indigenous person who navigates the white dominated world in a way that I can survive, Celia got it. And was not only welcoming and encouraging, but also supportive.”

“She was a leader,” Myrick wrote in an email, “that mentored others and helped so many — not to find their voice, as we already had a voice, but she helped us to honor our voice and know our voice and know that experience has power and a place in our movement.”

In a conversation with Mad in America’s Leah Harris in 2019, Celia Brown spoke of the impact of Michael Brown’s death. “I just felt like, ‘What can we do?’ And then I started to think of my son, and my nephews. What if they go through this and they don’t survive? I was really afraid, especially for my son, he’s a young Black man, and everyone else. And then I started to think about, what can we do as a movement, because we’ve done so many incredible things, to be a part of this time in our history? So yes, Black Lives Matter came, but what about our movement partnering with them, and any other coalition that wants to fight for this?”

The nexus of civil rights, human rights, and the survivor-led push for change in mental health was all of a piece for Brown, whose own experiences of sexual abuse, racist practices, forced treatments and related trauma were formative in her life and work. As she described in a 2008 Madness Radio podcast interview with counselor and advocate Will Hall, she was first hospitalized at age 16 in 1980 — the start of an eight-year ordeal involving more hospitalizations, multiple drugs and diagnoses, and loss of agency.

The result of those labels, she said: “No longer am I Celia Brown. I am a diagnosis.” But as she told Hall, her mother — part of the civil rights movement — refused to sign a document committing her to long-term state care. Eventually, Brown transferred to group housing. And in 1988, she attended “The Self-help Vision Conference” in Troy, NY, which opened her eyes to another way forward and introduced her to other foundational players in the early movement. The label-shedding commenced.

As she described to Harris: “I met Judi Chamberlin, Howie the Harp, Joe Rogers, Ed Knight, a few people that were already in the movement. And they were talking about alternatives to the mental health system, and developing drop-in centers and a self-help consciousness, that everybody has a right to choice. I was in a program where that wasn’t happening. I had no choices, really, only the choices of what the program wanted me to do.

“And I was just blown away. I remember saying to Judi Chamberlin, ‘Who’s allowing you to do this conference?’ And they said, ‘No one, we’re empowered, we’re activists and we can do this.’ And that conference transformed my whole life. I always knew that there was something different, there had to be something where people were talking about choices and talking about their rights. And here I found it. I have to say that that experience really changed my life. I came back to my housing program and I started to organize.”

So began Brown’s subsequent and irrepressible quest for both awareness and meaningful systemic change, becoming a member of MindFreedom — at the time, known as Support Coalition International — and getting involved in innumerable campaigns, organizations, and initiatives involving human rights in varied contexts. Among the many groups she served in multiple capacities was the National Association for Rights Protection and Advocacy (NARPA), where she sat on the board.

In a page of tributes to Brown compiled on the NYAPRS website, Rosenthal and others spoke of Brown’s unyielding passion and efforts to shift both paradigm and practice within mental health. As he wrote in the opening tribute and announcement of her death: “Celia was and will always be one of our movement’s most cherished and most influential leaders, a very kind, devoted, determined and humble leader who led the way in the advancement of rights-based advocacy, peer support, trauma informed approaches, cultural competence and humility, peer specialist roles and numerous efforts to combat racism and discrimination.”

Laura Prescott, President of Sister Witness International, wrote of her Bronx accent, her advocacy for people reclaiming power, and the way she “wordlessly anchored a space, making it feel safe because she was there. I admired the way she let us into her world, sharing her joy, anger, sadness, and love with tremendous grace and courage. . . . To me she will always be an example of what can happen when we dare to live with our hearts full and open.”

Tributes also flowed in across social-media platforms, where colleagues and compatriots in the peer movement mourned her passing and recalled both her kindness and profound commitment to change. “I’ve been an advocate for over 30 years, and I’ve never seen this outpouring of grief and gratitude — and it’s so beyond New York,” said Rosenthal, adding that he’s seen many of “the greats” honored over the years. “But there’s something about Celia that crossed all boundaries.”

On Facebook, Daniel B Fisher — an Open Dialogue family therapist who works at the National Empowerment Center and the National Coalition for Mental Health Recovery — called Brown a “mentor” and noted her 12-year service on the board of the NEC, “giving us her wisdom, strength, and support. She had a uncanny ability to bridge divides in our movement. I can hear her caring, loving voice right now, that we must carry on, reach out across generations, and around the world as she fearlessly led us to do. . . . My heart goes out to her son Kevin, who grew up in our movement and to the rest of her family.”

In her post, Jocelyn Brown said her sister will be memorialized twice in the months ahead: “One ceremony will be in Ghana, West Africa in the beginning of April where her ashes will live in the waters of our Ancestors. And the other service will take place in New York in February. Celia needs to be remembered for her life’s work, including all the people she’s touched along the way. The date and time will be announced after the holidays.”

Meanwhile, she asked members of the community to pay homage to her sister with donations to help build “a homestay and educational center” near Elmina and Cape Coast castles, which held enslaved people on the coast of Ghana before crossing the Atlantic. She also asked them to contribute memories of Celia Brown to a documentary film project honoring her life and work.

In an email, attorney and PsychRights.org founder Jim Gottstein recalled the “amazing things” Brown did for the community. “There have been an immense number of accolades for Celia Brown on her passing, all deserved, and none hyped. . . . She was truly a gentle giant, who kindly stood up for what is right,” he wrote, noting her “instrumental” role in the passage of the UN’s Convention on the Rights of Disabled Persons (CRPD). “She always seemed somehow to be there, especially when she was needed,” Gottstein said.

In her last year, battling cancer, Brown “persevered.” Just three weeks before her death, she delivered a keynote address — on “Peer Support Facilitates Change: Improved Quality of Life” — at the annual conference of the United States chapter of the International Society for Psychological and Social Approaches to Psychosis (ISPS-US).

“She can never be replaced and no one can fill her shoes,” Gottstein wrote, “but she would want us to do what we can to stop the horrible abuse of diagnosed people and provide help instead of hurt.”

Or, as Rosenthal wrote in his opening tribute for the NYAPRs: “Celia was a humble but powerful changemaker and truth teller, whose love, kindness and inspiration touched everyone she met. She was both a Mother of our Movement and she was a very dear friend to me. Her legacy will live forever. Every time we stand up for recovery and peer support and march for choice, rights and social justice… Celia will be there.”

In her conversation with Will Hall back in 2008, Brown spoke of her efforts to help others as part of her own path toward healing. She talked about her human rights campaign to put psych survivors “on the map” alongside those with physical disabilities. And she emphasized, in speaking of the UN Convention, the imperative role of human rights in any and all efforts moving forward.

“We have the right to our own treatment — or not treatment. We have a right to what works for us. And we need to be listened to. We need our autonomy and self-determination. . . . We have a right to life. We have a right to education, okay? And we have a right,” she said, “to liberty and freedom.”

4 COMMENTS

  1. I grieve, like so many others for our sister who has transitioned. Yesterday the zoom link maxed out with people coming to celebrate the life, the love and the legacy of Celia Brown. Since hearing of her passing I have gone quiet, feeling a sadness deep inside. My heart was overflowing hearing the many accolades and stories of Celia, her infinite reserve of strength, tenacity, determination to leave her mark in this world. To never give up moving us forward in the many ways and many projects she inspired, co-founded and supported. And she has left BIG shoes to fill but no one can fill them the way Celia did it. People shared so much I can’t begin to capture it here but knowing her and working along side her we will always have her laughter and deep passion in our hearts and minds. Her gutsy and unstoppable march towards justice, inclusion and human and civil rights will live on in all those who had the privilege to work along side her and benefit from her legacy. With her tenacious and loving embrace she crossed many divides, brought diverse people together and improved countless lives.
    My relationship with Celia was similar in some ways to the advocates and leaders who spoke yesterday but it also felt different. Celia and I shared a mentor- Janet Foner. (The blog David Oaks & I wrote about Janet Foner in posted on MIA). My last “project” with Celia was getting through Janet’s sudden and unexpected passing about 4 years ago. We cried together for many hours over many phone calls and coordinated zoom sessions to honor Janet, very similar to the zoom sharing that occurred yesterday for Celia. Celia’s honoring was filled with so many diverse people celebrating her “out there”, visible leadership and the passion with which she embraced life and blazed new trails of liberation and transforming many lives along the way.
    The work of an advocate is never done. One of the many loves that Celia had was continuing the legacy her father started. She completed the building a home and education center in Ghana. Her work there resonated so deeply in her soul and the souls of her ancestors – and in me. Celia’s family welcomes us to “Send your love through the link below”. https://donate.stripe.com/7sIbLBfX819s0jSdQQ
    The Brown family wants to keep the dream alive. In ending, I say, thank you sister for giving so generously, so lovingly, for so long. I will hold you close to my heart,, always. And maybe I will go back to Ghana and see the fruit of the Brown family legacy.