“Still A Locked Door”: Mental Health Peer Advocates Remember Those Living in Disability Institutions

“Still A Locked Door”: Mental Health Peer Advocates Remember Those Living in Disability Institutions

Jess Whatcott

For the staff at the Peer Self-Advocacy Program of Disability Rights California, experiences with hospitalization and the stigma around having a mental health diagnosis motivates them to bring attention to the plight of their peers trapped in institutions. As the organizers of California Memorial Project Remembrance Day (held every third Monday of September by state proclamation), the peer advocates work to share the stories of people who are living in California’s state hospitals and developmental centers, as well as other smaller facilities, in some cases for decades with no hope of getting out.

The California Memorial Project was first organized and funded by the California legislature in 2002, with the goal of locating, identifying, and memorializing those who died from the 1880s through the 1960s at state hospitals and what were then called state homes. The state of California estimates that 45,000 people have largely been erased from history and are buried in unmarked, sometimes mass graves. According to Robyn Gantsweg of Disability Rights California, in the early years of the project, any state records of those who died that still existed were passed on to the original project partners, although what was found was limited due to variable record keeping practices. Ground penetrating radar was used to locate graves at Napa and Patton State Hospital, however the latter was unsuccessful due to the location near the San Andreas fault that had shifted the location of the grave sites. Several memorials were erected on the site of current and former institutions. The last was placed at Napa State Hospital, the only monument with the names of some individuals buried there between 1876 to 1964 (see image).

Remembrance Day is the part of the original project that continues. Established in 2010 through proclamation by the California legislature, Remembrance Day consists of ceremonies that are held in person at sites across the state, including at some of the currently operating state hospitals. Since 2020, Remembrance Day has also had an online ceremony. The Peer Self-Advocacy program works with staff at state hospitals to ensure that current patients, family, friends, and community members can attend. According to Jesse Gilbert who works for the PSA program, many people come to the ceremony to share grief over loved ones who have died in state custody, or died due to a mental health disability.

Robyn Gantsweg was instrumental in expanding the focus of Remembrance Day onto the present. As she describes, “The Remembrance Ceremonies started as a way to honor and restore dignity to people with mental health, intellectual, and developmental disabilities who lived and died at state institutions without the recognition they deserved, in life or in death. It wasn’t until several years ago that we started also honoring and acknowledging those who currently live at state institutions.” She adds “The CMP holds so much more meaning for me now that we also acknowledge, respect, honor and provide dignity to those who are still living in these institutions. We can’t change what already happened in the past, but we can make things better today and in the future.”

While many things have changed since the deinstitutionalization, psych survivor, and self-advocacy movements began in the 1960s, peer advocates have many concerns about current conditions, as well as the continued use of locked, involuntary facilities for the treatment of mental health. Gilbert explains, “Institutions disappear people, they don’t disappear problems. So much like incarceration…a person is…taken away from the community to just not have to deal with them and put them somewhere else. That causes damage to an individual, and I think that people largely kind of assume that hospitalizations are there to help people, and that was not my lived experience, and that is not the lived experience of many people who find themselves hospitalized. The push to put someone in a hospital is not necessarily what’s best for them. In fact, it likely is not what is best for them.”

With the exception of Metropolitan State Hospital near Los Angeles, the vast majority of people in state hospitals in California are “forensic patients,” which means they arrive via the criminal legal system or are transferred from a state prison. According to Debi Davis who hosts peer self-advocacy groups inside several facilities, some forensic patients can stay in the state hospital system for 25 years or more. Many non-forensic patients dealing with mental distress and/or substance use disorders end up in smaller facilities that are run by county or municipal governments, non-profits, or for-profit entities now described by the state of California as “behavioral health” facilities.

Davis says that while things have come a long way, due to struggles of disabled people, many of these institutions are “still a locked door.” She remembers changes such as when the state passed a bill that required staff to check on people every 15 minutes if they were in restraints. Prior to the enforcement of this bill, people would be put facedown while in restraints and several died. As in the past, when individuals are first admitted to the institutions, the staff request an inspection of the person’s naked body, however, when Davis asked if a patient could refuse this, she was told they could. This is a far cry from the present “wellness model,” where residents learn about their diagnoses and receive education about informed consent. All residents are supposed to receive a copy of the handbook “Rights for Individuals in Mental Health Facilities.”

However, Jesse Gilbert, who works with the PSA, says that although the handbook and patient rights advocates are required these days to be at institutions, those laws exist because of the history of abuses. And the potential for further abuse is ever present because it is convenient for staff. Gilbert explains: “With staff there are attitudes…sometimes within facilities that kind of vilify patients. Particularly at state hospitals, where people may be there in a forensic capacity. I know that I interacted with people, staff members, who would call the patients ‘criminals’ and things like that.”

Gantsweg adds, “People think they’re receiving ‘treatment,’ but it’s really a way to warehouse people who are the ‘other,’ the undesirables who are locked behind heavy metal doors and 10-feet high barbed wire fences.” Peer advocates shared evidence of “warehousing,” especially in the state hospitals, which includes the fact that most residents spend the majority of their time in day rooms, where the primary recreation is television. There are some groups that residents can attend, including the regular peer self-advocacy groups that DRC organizes. However, beyond these groups, residents have limited access to outdoor time and recreation, and no access to computer technology, cell phones, or the internet which could help prepare them for re-entry and connect them to the outside world. Further, despite laws that restrict the use of solitary confinement and physical restraint, peer advocates still see them being used as forms of punishment, even when it is unclear whether a person is having symptoms of mental distress or actively choosing to disobey rules.

Gantsweg explains, “People forget or don’t realize that many [people] had full lives before they were institutionalized – many were artists, musicians, teachers, scientists, just regular people like you and me. Many had families, jobs, hobbies and life goals they were not able to reach because being institutionalized stole that life from them. They were scooped up one day and put in a place that was completely foreign to them, disorienting. Suddenly, the people they knew and trusted, the things that gave them comfort and joy, were all taken away from them. All of that completely disappeared as they were plunked in a foreign and sterile environment where it was difficult to be themselves and express and experience their identity…their voices are silenced, their existence hidden, they are no longer part of the community from which they came.”

Unfortunately, PSA staff warn of dangerous policy trends in California that seek to expand the state’s capacity to force people with mental health disabilities into locked, involuntary treatment facilities. PSA staff point to Governor Newsom’s CARE Courts, Proposition 1 passed in 2024, and several other “bad bills” proposed or passed by the legislature “that only serve to take away the rights of people with MH disabilities,” according to Gantsweg. While the number of individuals imagined to be eligible for CARE court has not yet manifested, Senate Bill 43 expanded the criteria of those eligible for CARE courts and potential conservatorship. In Gantsweg’s view, this is “Newsom’s way of trying to capture more folks and put them in institutions. And the intent behind this move toward reinstitutionalization and forced treatment is to clear the streets and remove folks who are unhoused.” However, she argues that “Their so-called “solution” to the problem of homelessness is completely devoid of logic and doesn’t even include housing, which makes no sense at all. The Housing First philosophy has been shown to be the most effective way to help folks living outside.” Equally alarming is the reality that there are people held in state, local, and private facilities that have been cleared for discharge, but there is no housing available for them outside, they remain in facilities.

Proposition 1 passed by voters in 2024 undid some of the efforts to shift funding from institutions to community-based programs. Prop 1 made changes to the Mental Health Services Act, messing with programs that in Debi Davis’ view are invaluable. She describes her experiences visiting some of the “wellness and recovery centers” that were opened with MHSA money and run by mental health clients: “I started going there, and I got to meet people. They had a computer center, and I learned some stuff. And then I was able to teach some classes, too, when people were wondering about like patient’s rights…the wellness centers are somewhere to go during the day, to be with their friends…it gives them a sense of community.” Davis laments the funding an energy going into institutionalization rather than these kinds of peer run and community-based support services.

Maria Garcia, who has worked at Disability Rights California for 18 years, persists in trying to challenge the narratives about institutionalized people that the state of California perpetuates with policies like CARE Court. Garcia says of people inside of institutions: “The people who live there are, like any other person, deserving of a second chance. They deserve to be treated with dignity, respect, and humane care. They have dreams and aspirations like anybody else. [Some] of them have someone outside that is waiting for them to come home.”

Davis adds: “One in five people in the US has a mental issue at some point in their life… I’m a mental health client. I’m a folk guitar player. I’m short. I’m a senior citizen. I have nieces and nephews. I like watching crime stories. There’s many pieces and parts of the whole Debi Davis, and it’s the same for everybody out there. We’re not unlike you all. We might not be able to have the monetary success because sometimes it’s really hard to hold a job…but that doesn’t mean we’re worthless.”

As both California state and federal policy undermines self-help programs in favor of carceral solutions, reinforcing narratives about the disposability of people with mental health disabilities, this Remembrance Day on September 15, 2025 is more important than ever. The public is invited to attend a Remembrance Day ceremony that is local to them. For more information visit: California Memorial Project (CMP) | Disability Rights California.

Editor’s Note: For more, read the following guest essays from the DVP

This Remembrance Day, Remember the Dead So We Can Fight for the Living (2024) by Jess Whattcott

Institutionalization About Us Without Us: California’s Proposition 1 (2024) by Katherine Wolf

ABOUT

Jess Whatcott (they/them) is an educator, writer, and abolitionist organizer based in San Diego, California. Their book Menace to the Future: A Disability and Queer History of Carceral Eugenics is available now.

 

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