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Since 2005, I've been a member of an organization which is now called the Creative Wellness Center (originally called the Creative Living Center). It's a Berkeley institution that has been around for about 45 years to offer a supportive community for adults with mental illness. It was announced on Friday that there is going to be a massive overhaul of the program, and I'm pretty upset about it.

Who Are the Members of CWC?


In order to become a member of CWC, a person goes through a screening process that involves providing a reference (usually a therapist, psychiatrist, or case manager who explains the person's mental health issues) and an interview, but membership is not too strictly limited, as members vary widely in their type of mental illness and their level of functioning.

There are members with schizophrenia, bipolar disorder, dissociative identity disorder (DID, previously called "multiple personality disorder"), depression, anxiety, obsessive-compulsive disorder (OCD), post-traumatic stress disorder (PTSD), and traumatic brain injury, to name just a few. Some have a "dual diagnosis," meaning that they are battling addiction and mental illness at the same time. Some live in "board-and-care" group homes with "payees" to handle their money; some live with family; and some live independently. Many of us have been hospitalized at one time or another for mental health reasons.

There are members who barely speak, or who only mumble incoherently, or who speak at length in seemingly nonsensical rambles, but there are also members who can carry on a deeply intellectual conversation about academic topics or the state of the world. There are members who have graduate degrees, who are married, who are caring for elderly parents suffering from dementia, who have held serious jobs such as an urgent care nurse. Some have adult children; some even have grandchildren.

There are members who function well enough to co-facilitate therapy groups, and there are others who suffer from debilitating delusions, hallucinations, paranoia, or other psychotic symptoms, people who disrupt groups with sudden paranoid accusations that someone has been saying mean things about them or who rant at length about the extremely restrictive messages Jesus has been sending to them through the radio about what foods they shouldn't eat. Some are able to control themselves quite well, while others have outbursts they can't control. Some drool. Some interrupt when it's inappropriate or laugh at odd times. And some are people you would meet out in "the real world" and never guess that they suffer mental illness at all. Some of us seem quite "normal." Some of us definitely don't. We all accept each other at CWC.

The membership is somewhat racially diverse, consisting of perhaps 50% white members, 25% black members, and 25% Asian members. There is very little Hispanic or Latino presence. We range in age mostly from mid 20's to mid 70's. We have openly gay/lesbian members and one openly transgender member. Most members do not talk much about religion, but I know some who are devoutly Christian, Muslim, or Hare Krishna. Several members have significant mobility problems and use canes or walkers. Three members have service dogs. Most members live financially on some sort of government assistance, either SSI or SSDI, and so do not have a lot of disposable income. Most do not own cars, let alone homes. There is a heavy reliance on public transit, including "Paratransit" (a service for the disabled who are not able to use mainstream public transit independently for whatever reason).

It's a fairly diverse population, ranging widely in age, cultural background, life experience, level of cognitive/emotional functioning, severity of mental illness, and amount of external support. Some live very lonely lives and get most of their socialization and emotional support from CWC.

Despite this diversity, the community at CWC is very tight-knit, very supportive and kind and accepting. When someone makes a paranoid outburst during a support group, we reassure them that the perceived personal attack is not real, that everyone supports them and that everything is okay. If they can't calm down and have to leave the room, that's okay too. If someone begins incoherent shouting during the community meeting, we try to calm them. As long as everyone does their best to behave responsibly and not threaten others in any way, the community tends to be very patient and understanding of the ways that mental illness can disrupt our lives. It's the one place where we don't have to fear stigma or judgment about this particular struggle.


What Happens At CWC?


As long as I've been a member, CWC has been located in Berkeley churches that donate space during times when they are otherwise not being used.

CWC operates on Mondays and Fridays from 9 a.m. to 3 p.m., with some much more limited "art room only" on Tuesday mornings. It is completely voluntary, and members can attend as often or as rarely as they like. Sometimes we won't see someone for months or years, and then they will return. Other people never miss a day. Some people come for just an hour or two, while others arrive when the doors open at 9 and don't leave until the doors close at 3. It's completely flexible to the needs of each individual.

On Mondays and Fridays, there is always a "community meeting" at noon (attendance optional), where official announcements are made, members can speak up about successes in their lives that they want to share with the community, people can give information about local resources others might not know about, there's often a word puzzle, there's often a "word of the day," etc. It's just a time to bring the community together.

And then, at 12:30, a generous, healthy lunch (often very delicious) is offered for $3. (But members can earn vouchers for a free lunch by doing chores such as sweeping the floor, leading the noon meeting, serving lunch, doing dishes, cleaning brushes in the art room, washing the tables after lunch, etc. Many members with limited financial means find this very useful, as they can get a free meal by doing some work to help the community.) The cook, Mitch, uses a lot of interesting ingredients and tries to make creative meals. We get a lot of fish, salads, unusual vegetables and grains that we might otherwise never have tried, etc. For many members, these are the only healthy meals, cooked from scratch with fresh produce and such, that they get each week. And twice a year (around Thanksgiving and around Christmas), there is a special fancy celebratory meal that is free to all members.

The downstairs of the church is mostly a large common area (with tables, chairs, and a couple couches) where people can just sit and talk, play Scrabble, play ping-pong, play pool, or use the program's one open-use computer (with Internet). Upstairs there is an art room with lots of different art supplies available for anyone to use. And there are a few smaller rooms (up other flights of stairs) where groups can meet or where individual therapy sessions can take place.

There are a wide variety of different groups that members can attend if they wish. All participation is optional and voluntary. There are support groups (including co-ed groups, a women's group, and a men's group), a writing group, art therapy groups, a walking group (they go for a 50-minute morning walk around the neighborhood together), and other groups that vary based on what people are currently interested in (a yoga group was quite popular; there used to be a "self-esteem" group; there is sometimes a "current events" group in which members take turns discussing articles in the newspaper; lately there's been a "wellness" group that seems to focus primarily on meditation; etc.).

There are occasional outings (2 or 3 per year), where the program rents a bus to take members to local parks, museums, or other sites. At least once a year, there is a talent show, in which all members are welcome and encouraged to participate.

There is a small permanent staff (Merrie, Paula, and Jim) who are licensed therapists but who primarily work to just keep everything moving smoothly. They step in if someone becomes disruptive, they talk with people who are having a tough day, they take care of the day-to-day bureaucratic necessities of the organization, etc. And then there is a group of interns, students currently working toward becoming licensed therapists. There are generally about 6 interns at any one time, and they each stay for a year, so there's a continually cycling "changing of the guard" as one intern leaves and another begins their year with us. It's often very difficult when an intern leaves, because the members become very attached to them, and the reverse is also true.

The interns are in many ways the lifeblood of CWC. They lead support groups, hang out in the art room to offer help when needed, hang out in the common room to casually chat with whoever is there, and conduct weekly one-on-one therapy sessions with individual members. Wherever you go at CWC, there's pretty much always an intern present, and they are always there to offer support, defuse any difficult situations if someone becomes disruptive, coax the lower-functioning folks to get involved in things, etc. They dramatically impact the atmosphere by keeping things positive and calm and by keeping people engaged.

What's Happening to CWC


So on Friday Merrie (CWC's director) announced that CWC is going to be changing dramatically due to some new funding arrangement with Berkeley Mental Health and Alameda County. Berkeley Mental Health is overworked, and apparently they want CWC to become a place that picks up some of the slack.

So, first of all, CWC is going to become a full-time program, open all day, 5 days a week, with some early evening hours as well. This was the first thing Merrie announced, and I thought, "Cool!" This does means that CWC will need to move to a new location, since the church that currently hosts the program has their own uses for the property sometimes, but this location has been very problematic, so a change of venue would be welcome. They're hoping to find a property that is more accessible to people with mobility issues, since the current location has tons of stairs and tiny, non-wheelchair-accessible bathrooms. This would be a VERY good thing.

BUT ... there are a lot of unknowns at this point, as the new program has not been clearly defined as of yet. It is unclear whether the current staff (who have always been a major presence) will continue with the program. It is unclear whether there will continue to be interns. It is unclear (and apparently unlikely) whether lunch will be offered. All of these possible losses concern me, because they would change the nature of the program significantly, but apparently decisions haven't yet been made.

There are some things that ARE known that sound very bad to me. For one thing, there will be a new emphasis on "recovery," which makes absolutely no sense when applied to most current members at CWC. Nobody's going to "recover" from schizophrenia or bipolar disorder or traumatic brain injury. We've got issues that we just need to deal with for the rest of our lives. CWC has been great at accepting and supporting us in living healthier, happier lives while dealing with mental illness. But (from what Merrie said) it sounds like the new program is going to emphasize stuff like encouraging people to get jobs, instead of supporting people AS THEY ARE, WHERE THEY ARE RIGHT NOW. It sounds like it isn't going to be a program focused on emotional support; it's going to be a program focused on fixing problems. Obviously I don't object to programs that fix problems ... I just would prefer that they don't appropriate a program that serves a different purpose and transform it into that. There are already other programs that address that particular problem—expand them or whatever, but don't destroy CWC to make it into something else.

Another thing that will be changing is that the program will no longer have a membership screening process. Anyone will be welcome. Apparently, just random people off the street will be able to come in and join our support groups where we talk about our deepest feelings and troubles. And if anyone can just walk in off the street, how do we even know that they have a mental illness? When I expressed concern about this, Merrie assured me that the program would still be intended for adults with mental illness ... but she didn't explain how they were going to achieve this while still making the program open to everyone. And the "open to everyone" sounded like it wasn't optional, like it was part of the mandate coming from Berkeley Mental Health and Alameda County.

What I worry most about is that it sounds like they are wanting to massively expand the size of the CWC user population—introducing a lot of new people, many of whom will probably come from the extensive Berkeley homeless community—while simultaneously talking about getting rid of the interns who keep CWC a safe, supportive, and fairly orderly place. I'm very much afraid that they are going to double the number of mentally ill folks in the community, while simultaneously reducing the amount of support available.

Mentally ill people can be unpredictable. Sometimes somebody who previously seemed perfectly nice goes off their meds and unexpectedly starts behaving violently. Sometimes someone suffers a bout of paranoia and decides that Random Stranger has been doing something mean to them, and that they have to fight back to defend themselves. Sometimes somebody just has a really bad day and doesn't have the emotional stability to control themselves, and so it overflows onto other people. Having a healthy ratio of staff/interns to members/consumers/crazies is what keeps CWC safe. If there aren't enough authority figures around, then the more vulnerable members of the community (for example, people who are lower-functioning) will be at an increased risk, because they are unlikely to seek out help if they are feeling threatened.

Also, CWC currently has rules about appropriate behavior, and if someone breaks those rules (threatening someone, spouting hate speech, carrying a weapon, not respecting confidentiality, etc.) repeatedly and/or egregiously, then the staff suspend that person's membership temporarily. I think they usually give a 1-month suspension if someone has been refusing to follow the rules despite warnings. If someone comes back after a suspension and continues the bad behavior, then their membership can even be revoked and they won't be allowed back. But if there is no membership and anyone can come in whenever they like, how do you make people follow community rules, and how do you keep out the people who are consistently violent and abusive? I'm not sure how they'll manage it ... especially if they have fewer staff members!

So I'm pretty much afraid that the CWC that has been such a great support to me over the past several years is basically going to cease to exist, and is going to turn into another type of place entirely. A less safe place, a less supportive place, a less friendly place, and a less helpful place. I imagine a common room full of smelly unmedicated homeless people carrying knives, occasional unpredictable explosions of threatening behavior, and no staff to be found except some crab-faced woman grilling me about why I don't want a job.

I'm aware that my anxiety is causing me to come up with a bunch of worst-case scenarios, but ... dude! That's because I have a mental illness! Which is why I need CWC!

Well, we're planning to move in 2020 anyway, so I was going to have to abandon CWC eventually. It just appears they will be abandoning me first.

We'll see. Merrie wants to form a "task force" of members to help guide the decisions about how to run the new program, and I've volunteered to help with that. At least it might help me feel a little less powerless in this situation.

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