Personally Speaking: Making space for Black SMI advocates
By Sabah Muhammad
I conducted an impromptu survey some five or six years ago in one of the popular Facebook groups for severe mental illness (SMI) advocates. I asked denizens of the group “what is your ideal structure for crisis response?” The answer surprised me. All the advocates mentioned a police presence in their answers. I then expanded the parameters of the survey. “Dream big,” I encouraged the group, “unlimited funding, a utopia where any infrastructure is possible.” The white SMI advocates continued to insist on the need for police to be involved in crisis response. I couldn’t believe it. Why would anyone want law enforcement involved in a loved one’s mental health care? It was obvious that they had a blind spot to the experiences of racially and culturally marginalized people and the state of policing in our country. Calling the police obviously didn’t mean the same thing to them that it did to me.
As a family member of someone with SMI, used to so many roadblocks and so much rejection, I was devastated all over again. I had entered this online space seeking empathy, community and solutions. But after I joined the group, I felt like my experience with SMI — the Black experience of SMI — was something out of the ordinary, a minority view.
As an advocate, I know that the minority experience within the larger population of those with SMI is a viewpoint that must be heard. In an op-ed for the Washington Post in 2020, I shared something of that experience, describing how fraught and perilous it is for families like mine to call the police during a loved one’s psychiatric emergency. But in this mostly white SMI advocacy space, people couldn’t understand what I was talking about. Or perhaps they didn’t want to understand.
Outside of the Facebook group, I began working with Black SMI advocates on my own. Police encounters with people with SMI were our primary concern. These peers were not surprised by my feelings of alienation in white-dominated SMI advocacy spaces. They, too, felt marginalized, even silenced in those spaces. SMI advocates know all too well what it is like to be invisible, and in those conversations, we felt even more invisible.
Still, I stayed in the Facebook group. I wanted to be part of this family of advocates. Yet when issues of race and culture and how they informed my experience with SMI continued to be dismissed, like members insisting that mental illness is “color blind” so our experiences are “all the same.” I became so disappointed and frustrated that I left what could have been a welcoming space, and one that I needed and wanted to fit into.
I thought I might have to just accept feeling invisible in the world of SMI advocacy, but recently I have found another way for myself and others like me to be seen and heard.
It all started with a red notebook. In it, I began collecting stories, preventable tragedies, about the Black SMI experience. Stories that went beyond sensational headlines and wrestled with the complexities and nuances of the Black SMI experience. Accustomed to working in silence, I didn’t mention my red notebook to anyone. I just held those stories close
Then, last year, Lisa Dailey, Treatment Advocacy Center’s executive director and my boss, asked the magic question, “Is there something special you want to work on?” She listened as I told her about my research into the Black SMI experience, and she responded by empowering me to use my newly created role as Treatment Advocacy Center’s first DJ Jaffe advocate to marry grassroots advocacy and the dismantling of racial and cultural barriers to treatment.
I opened my red notebook again, read through the stories again, and envisioned a new podcast for Treatment Advocacy Center dedicated to telling stories about the Black SMI experience. This podcast, which I plan to debut soon, will be a place where the Black SMI experience will be heard and supported. Maybe I never found the SMI advocacy space where my voice and my unique experience could be given a spotlight, but I knew I could create it.
Working on this podcast, I’ve discovered that there are so many voices that simply need a champion, someone to help lift their stories up. I am humbled that so many families, despite stigma and efforts to silence them, have been willing to share their stories with me, and I can’t wait to share the podcast with the wider SMI advocate community.
Access means more loved ones get treatment, and that’s what matters most.
As SMI advocates, we know it’s vital for the majority to care what happens to the minority. White advocates, and advocates with any amount of privilege, must turn and face their blind spots head on. There are books that haven’t been written because families of color are silenced. That means there are possibilities and solutions to SMI that have yet to be discovered.
We ignore the plight of those at the margins of our SMI community to our detriment because racial and cultural barriers to treatment leave the most vulnerable families out in the cold. After all, a system that can compassionately and safely give aid and treatment to the brother that I love can do the same for every single person less marginalized than he is.
SMI does not discriminate in who it afflicts, that is true. But the people and systems we entrust with our care do, and some families are left untreated while others gain hope and access.
We can change that, and we must.
Sabah Muhammad is legislative and policy counsel at Treatment Advocacy Center, where she is the inaugural DJ Jaffe advocate.