The California Memorial Project (CMP) was established in 2001 to honor our peers with mental health disabilities who lived and died in institutions. Since that time, we still house people involuntarily for years on end, they still die away from their loved ones, and they are still being held against their will for “treatment.”

The CMP continues to recognize our peers from the past. Now we are adding a new and valuable focus, to acknowledge residents who presently live in those same institutions for mental health “treatment.” We decided to talk with residents who have lived most of their adult lives inside a state hospital in honor of our peers who have gone before us.

Inside The Walls-Of-Treatment

Many people are still living in large, over-populated and locked settings simply because of their mental health. These state “hospitals” control every aspect of their day-to-day lives. Imagine not being given the chance to decide what you can and cannot do for every choice in your life. You do not have your own clothes, you cannot choose to have a cup of coffee or sit outside, you cannot even decide to change your hairstyle just because you want to.

We are talking about people - they are our loved ones, family and friends, neighbors, musicians, engineers, teachers, … they are our Peers - just people, like you and me. Some have lived in confinement for over 30 years, with no hope of ever leaving.

Most are men who have been accused of committing a crime. Many pled “Not Guilty by Reason of Insanity” (penal commitment code 1026.5) because of their mental health and the crisis they were in at that time. They are not receiving meaningful treatment for their conditions and have not been able to seek help outside the state hospital.

But no one wants to admit they probably won’t get out. They will probably die there. Most outsiders don’t know they live in confinement, not for crimes but for “treatment.”

Their Lives, Their Stories

We interviewed some residents and asked them to share their personal stories with us. We called the patient phones, but most of the time no one answered. When someone did, we asked for people by name, those peers with whom we had a connection. Some were in their rooms, often sleeping, or in the day room watching TV.

The patient phones hang on the walls in the middle of the unit halls. Although they have a “right” to confidential phone calls, anyone and everyone can hear what they’re saying. Loud voices, background conversations and people walking by make communication hard. But they are used to daily interruptions, whether it be early morning wake-up calls, treatment group meetings, standing in the medication line or structured “free time.”

While their day-to-day lives are similar, their experiences vary as they talk about “the good, the bad and the ugly” of living in a state hospital.

In His Own Words

Greg Roberts (name has been changed) has been at Patton State Hospital for the past 41 years. He is now 61 years old. When asked to describe a regular day in his life, he immediately told me, “I don’t get into any fights,” “I don’t misbehave,” “I take my medications” and “my mind is clear.” Greg said he is not suicidal and doesn’t hear any voices. He said, “Most days I am in a good mood and feel good every day.”

Breakfast is at 7 am. Greg said “I don’t mind,… I can do the routine.” Because of Covid, he and his roommates eat in the same building where they sleep, instead of in the dining commons. I asked if he felt safe with Covid spreading around – he said he feels safe, wears a mask and got vaccinated. He shared that some of his peers on his unit had died from Covid. They were kept in a separate unit while they were sick. Greg attended the memorials in the courtyard, and “there was music and talking.”

There are treatment groups every day, but “I don’t feel like going to them and don’t go anymore –  it’s no use.” Greg said he followed his treatment – breakfast, lunch and dinner. Medications. Showers. “I make my bed” and “stay out of trouble…. I just stay here” and “learn to adapt.” He tried to do everything right, but having been in the state hospital for so long, he was tired and knew he wasn’t going to get out. He had lost hope.

A Peer Perspective From Outside

As Greg was telling me his story, I felt frustrated, sad and heartbroken. I could understand why he stopped trying - what was the point? After all, he was doing everything he was supposed to do, but was still stuck in that place. I felt really mad and wanted him to feel mad – mad they wouldn’t let him out. But he just seemed to accept it. I couldn’t let go of his feeling of hopelessness.

As a peer advocate, I have always felt there is something we can do to change things. We couldn’t just give up. I wasn’t judging Greg - I just didn’t want him to accept things as they were – why wasn’t he fighting for his freedom?

He said he didn’t even remember doing anything wrong. I felt it wasn’t fair he was locked up for something he didn’t do. At least he didn’t think he did it. That was his reality. It wasn’t right he was being punished based on what “other people” said he did. They say he is “getting treatment,” but there is still a lot about mental health that providers don’t understand. The treatment Greg was getting wasn’t helping him, and I think the 2-story high, reinforced steel and razor wire fence was just one more barrier that kept him from getting better.

After I hung up the phone, I realized that after 41 years living in confinement and being told what to do, Greg was totally institutionalized. He probably didn’t realize the routine and restrictions had broken him down. Like a wild mustang, he had been corralled, tamed and molded into a “model patient.” Beaten down by the system, he knew he was never getting out. I realized, after hearing Greg’s story, I was feeling hopeless, too. And I’m not even the one locked up…

State Hospitals:
No Escape from Covid

The California Memorial Project (CMP) honors our peers with mental health disabilities who lived and died in California state institutions. Many were buried in mass or anonymous graves and remain nameless. Plain stone markers with numbers are the only way we know they ever existed.

Even today, many people are still locked away in state hospitals - often unacknowledged, unseen and unheard. It’s easy to forget them. They live in confinement, which is so restrictive, they have no sense of freedom or personal autonomy. They have no sense of control, and their daily decisions are made for them.

The hospital is a secured environment. During this time of the pandemic, everyone is screened (and, at times tested) for Covid before they enter the secure treatment area. But exposures still occur when residents come in contact with staff and new admissions. Who knows what else people bring in with them from outside? They probably don’t realize they put residents at greater risk of getting the virus.

Hospital staff and residents follow safety guidelines to limit the transmission of Covid - they wear masks, regularly wash their hands and most get the vaccine. Housed with over 1000 people, there is no way to social distance. Residents still get sick or die.

When a resident has been exposed to the virus, those living in the same unit are quarantined for 14 days. They can’t leave their units to go to the dining room or access the library or participate in any treatment activities. The common areas are closed. They can’t even open a window to air out their room. No one gets grounds privileges, and they are only allowed to spend a limited amount of time in the courtyard to get fresh air. There is only so much the hospital can do to protect residents against Covid.

The Department of State Hospitals (DSH) keeps track of the number of residents who have tested positive or died due to Covid. Between May 15, 2020, and May 10, 2021, a total of 1897 residents tested positive and 73 residents died during this pandemic at all 5 state hospitals combined. Up-to-date statistics are posted daily on the DSH website.

In 1918 at San Quentin prison, at least 1450 people living in similarly overcrowded conditions and confinement (over 76% of the institution’s 1900 prisoners) reported sick at the height of the Spanish flu outbreak (L. L. Stanley, “Influenza at San Quentin Prison, California,” Public Health Reports 34, no. 19 (May 9, 1919): 996.). This current pandemic and its outcome isn’t any different from 100 years ago. We haven’t learned from our past. Have we learned from the present?

Now that the Covid vaccine is available for residents, many might assume the danger of getting the virus is minimal. But what happens when some other virus or socially communicable disease arises again in the future? It is not a matter of “if,” but “when.” Is there a plan for the next one?

This past year shows there is no escape from another pandemic for residents in state hospitals. Living in a restricted setting is dangerous. It is urgent to create more living options and treatment for people with mental health disabilities so they can recover in the community rather than in confinement.

 

View our California Memorial Project program page.