I was getting burned out as a patient representative visiting the Brattleboro Retreat last winter. I found my conversations with patients to be mostly rewarding and mutually beneficial, but all of my attempts to seek accountability and positive change on the units were met with steep resistance, excuses, paternalism and so much sanist rhetoric.
I helped patients file grievances alleging abuse and mistreatment, and they would often be ignored or responded to with victim-blaming, gaslighting, and denial. I sometimes felt like hitting my head against the wall would have been more productive.
In addition to the lack of progress and lack of accountability, every time I visited the hospital, staff on the units would joke about not letting me leave. Without a key, I would sign out of the visitor log and ask a staff member to let me off the units. Without fail, the staff member would joke something along the lines of “I don’t think we’re supposed to let you go.”
I was a peer advocate, I spoke openly about my hospital experiences, and my distress and overwhelming life circumstances that had led me to seeking psychiatric help. They knew I identified closely with the patients, and so they thought this joke would be funny. I’m one of the people they lock up. They were laughing at an experience I have lived through that was deeply traumatic and deeply painful.
I found it to be extremely damaging to my overall wellbeing to continuously be entering a facility that was openly hostile and unapologetically violent towards mad and neurodivergent people such as myself.
In a move for self-preservation, I stopped visiting the units and decided to pursue activism more in my private life and switch to writing, design and social media outreach in my professional work with Vermont Psychiatric Survivors.
I have continued to serve on the Retreat’s Consumer Advisory Council, which is at least partially made up of survivors of hospitalization. I thought this was one avenue in which I could safely participate in hospital advocacy.
During a meeting of the CAC in August of this year, we learned that the Retreat was planning to accept a $5 million grant to build a new temporary unit, with 12 new involuntary beds. The state is allocating these funds in an attempt to address long emergency department wait times.
My coworker on the council asked to clarify this point. We know based on research that VPS conducted last year, that the majority of people held in emergency rooms walk in voluntarily seeking help.
Adding more involuntary beds will not address the lack of community resources that lead people to end up in the ED.
We also know based on our research that 75 percent of holds studied were of homeless individuals. We need more housing, not more psych hospital beds.
In that CAC meeting, what was equally as disturbing as this poorly justified expansion of forced confinement was a brief mention of tentative plans to eventually turn the new space into a secure residential facility for adolescents. In other
words, long term institutionalization for disabled youth.
I was horrified by every word that was spoken. My hands shook. The space in that room seemed suddenly solid, heavy, and to be suffocating me. I had to fight the space itself and my own body just to speak up and have my truth be heard.
“Please stop torturing people.” I think I said something along these lines. I asked that the Retreat truly act in the best interest of its patients and work towards an end to involuntary commitment.
One of the CAC members at this point said something to the effect of, “We can’t just let the severely mentally ill be free to repeatedly victimize people.”
I swore. I realize that was unprofessional of me. I could not at that moment bear this insult, when people with psych labels are 12 times more likely to be the victims of assault than the general public. Despite being no more likely to commit violent crime, we’re still routinely blamed for mass shootings.
I’d seen firsthand so much suffering and abuse inflicted on mad people in my community as well as in treatment settings. I couldn’t bare this sanism at that moment, and I swore.
My coworkers and I drafted a letter to the CEO of the Retreat, Louis Josephson, asking that he act in the interest of the population the Retreat serves by refusing the grant and instead advocate for the expansion of community-based services and peer respite. We recently received a letter back asserting that the new unit is only a temporary effort to address an urgent need in the state.
There is a viable and affordable way to meet many of our actual needs for safety and support in our communities. We need more peer-run respite centers.
Peer-operated crisis respites provide better outcomes than hospital stays. They could be developed rapidly using existing peer-run networks, cost far less than inpatient care, and further Vermont’s goal of developing its peer support workforce, as written in Act 79 of 2012.
Vermont currently has only one peer-based crisis respite with two beds, Alyssum, which serves 50 individuals per year and turns away more than half that many because those beds are occupied. Many individuals across the state have not been able to access this resource because they lack transportation to its remote, low-population location.
My Brattleboro-based coworkers and I recently drafted a proposal that the state fund the creation of six peer-operated crisis respite and community centers with two beds each, to be located in communities throughout the state where they are needed most and can be accessed most easily. These centers would operate as hospital diversion, step-down for folks leaving the hospital, and a resource to people in the community just looking for support but not respite.
We project that this network of peer respites would be able to supply up to 624 individuals with short-term respite, and many more will be able to access peer support through the community centers.
We can likely prevent the majority of crises that lead people to seeking help at the emergency department. We can prevent those folks getting put on involuntary holds and getting committed to psych hospitals.
This would also likely open up more resources and beds within the hospital system for those who are truly seeking that level of care.
Right now we have a mental health system that holds people against their will and forces psychiatric interventions on unconsenting individuals all while repeatedly turning away folks consenting to intensive psychiatric treatment.
These are two sides to the same paternalistic coin, and are both symptomatic of an utter lack of community resources. We can actually take steps towards an abolition of psychiatric force and coercion. And doing so would cost the state less than perpetuating and expanding the current coercive system.
I sometimes imagine how things could have been different when I was working as a patient representative.
What if there had been an entire community of peer support workers in Vermont and voluntary beds in noncoercive settings ready for those people who needed to get out?
What if I could have just made a phone call and then given folks a ride to a local respite house?
What if involuntary holds were so rare that I didn’t feel overwhelmed looking at my list of folks to check in with every morning? What if involuntary holds were abolished all together? What if everyone on the units had requested to be there?
And what if I felt secure in the knowledge that there was a safe place for me to go to and get support if frequent exposure to paternalism and sanism drove me to more distress than I could manage on my own?
Funding peer respites rather than expanding a system that can be so damaging is necessary, affordable and long overdue.