Mental Illness in Community: What Can We Offer?
I was in college in Connecticut when I met Delancey: a strong, big-boned, graceful woman, with a proud and open carriage. When she left school to find work as an apprentice on an organic farm in Maine, I was inspired by her example. A semester later, I moved to Twin Oaks community in Louisa, Virginia. We stayed in touch, and Delancey visited and joined Twin Oaks the following fall.
Delancey suffered from bouts of severe depression. It is likely that, had the membership of Twin Oaks understood their full extent, she would not have been invited to join. Delancey had already tried to kill herself several times, but she convinced herself, and the membership team, that all that was behind her. Eventually, however, everyone knew that she was depressed and potentially suicidal.
When Delancey’s condition became generally known, a number of people thought she should leave. Some were afraid they would be overwhelmed by her needs, and didn’t want to risk getting emotionally attached to her. Others felt angry, and resented the phenomenon of the “sweet young thing” getting all the attention. Some declared that suicide is violence, she was potentially suicidal, and therefore she did not belong in a nonviolent community. Others were firmly convinced that we could not help Delancey and should not be trying—that only professionals stood a chance of helping her.
Still, there were many who wanted to help. We never thought of ourselves as “professionals” — she had those in town. We were her family. We formed a care group, composed of three (later four) core members and several more volunteers approved by Delancey. We had weekly lunch meetings at a picnic table slightly removed, but still visible, from the main eating area. During this time we set up a schedule of people to check in with Delancey.
These meetings were always an ordeal for her. There she was — the focus of attention as a person with special needs, in a community where she knew that many people believed that her needs were not appropriate. She told me that she often felt humiliated by her situation.
The care group took on the work of looking for other living situations. Where could Delancey go that would be more suitable? We discovered there was no place. The institutions that call themselves therapeutic communities tend to have a clear division between staff and patients, they are not democratic, and they are expensive. For $100 a day, we found a few places that just offer maintenance. Programs that include therapy cost at least $800/day. What we had was a highly intelligent and motivated adult, who functioned extremely well about half the time, and other times did not function at all. She needed to be someplace that could challenge and interest her when she was in her high-functioning mode, as well as nurture her through her hard times. She needed to be somewhere that she could make a meaningful contribution to the lives of others. Most importantly, it had to be affordable. Even-tually the care group concluded that Twin Oaks was probably her best bet.
The core members of the care group also tried to act as an advocate for Delancey by negotiating through complicated community politics. We wrote reports and asked for feedback from the community. We tried to balance advocacy for Delancey with consideration for the needs of the community.
Delancey worked almost constantly on her own healing. She signed a contract with the health team in which she promised to continue to work toward wellness in specific ways. She participated in a sexual abuse survivors’ support group in nearby Charlottesville. She saw both a therapist and a psychiatrist. She was on Prozac and Xanax. She tried to exercise regularly and eat well. When things got really bad, she checked herself into a mental hospital. Once, a few members of the care group went through extensive community process in order to receive permission to use some of their frozen prior assets (money outside the Twin Oaks style income-sharing) to send Delancey to an expensive special program for a week. Twin Oaks paid half the cost.
One doctor who worked with Delan-cey gave her a diagnosis of severe post-traumatic stress disorder. “Delancey’s is a terminal case,” she told the core group. “She will almost certainly die from it, unless she gets very expensive treatment, which you probably can’t afford.” The doctors at the special program had a more optimistic outlook. They diagnosed her with a dissociative disorder, and said she might eventually “grow out of it.” Of course, we preferred the second prognosis.
Delancey loved Twin Oaks. She loved the land, and the people, and being able to make a difference in our little society. She toiled in the gardens in the hot summer sun, and in the forests making firewood in the winter. She milked cows in the early morning and did afternoon shifts at the sewage treatment plant. She played with the children, took food to the sick, and consoled the heartbroken. However, she fell behind in her labor contribution.
Delancey was hesitant about claiming sick hours for her depression, although often, when it was severe, she was unable to get out of bed. Even though she worked hard when she could, she was unable to meet her labor obligation to the community. After having been a member for a year, she reverted to provisional member status.
When this second provisional period was over, and she came up short again, standard community policy was followed. There was a confidential poll on whether to accept or reject her for full membership. In her words, she flunked it. Of the 90-some adult members at Twin Oaks, 19 voted to revoke her membership status. That was twice the number required, and a surprise to many of us.
At the time of the poll, I was the only core member of the care group who was home. I followed Twin Oaks’ appeal policy through the regular channels. Both the membership team and the board of planners declined to take action, and my appeal ended up as an override petition on the bulletin board. If a majority of the full members signed it, Delancey would be reinstated as a member.
The petition was on the board a full week and was one name short of a majority, with several days to go. I remember hearing rumors that this or that person was waiting until the last day to sign if nobody else did. There was a half-hearted attempt at a community meeting, but it was too late for simple conversation; everyone was waiting to see what would happen. The unusually hot July air was tense and still with the waiting.
Then one morning, Delancey didn’t show up. Driving to the community’s farm a few miles away, two friends and I found the orange pickup truck, still running. The auto shop exhaust hose was jammed into a fogged-up window, and the gap was stuffed with pillows. We found a bottle of prescription sleeping pills in the glove compartment, and a stiff, bloated body lying face down on the floor of the cab.
The community was torn apart: bitterly divided and churning with guilt, recriminations, anger, alienation, confusion, grief, and fear. People who had not signed the override petition were not speaking to those who had, and vice versa. Many members did not go to the funeral that we held at the Twin Oaks graveyard. Even first-time visitors to the community could feel the heaviness hanging in the air. It was terrible.
In the aftermath, which lasted a long time, there was more community process than there had been during Delancey’s membership. There were separate meetings, each with an outside facilitator, for the signers of the override and the nonsigners. Each gathered as a group to vent and discuss the issue. There was a full community meeting to try to bridge the divide. There were meetings to try to change the anonymous polling system. There were discussions about whether to try harder not to accept high-risk members. Many people left the community. The impact continues, from policy changes to subtle attitude shifts to greater overall awareness, but not necessarily to answers.
The Contract/Personal Responsibility
The contract Delancey signed with the health team was an important part of her continued membership at Twin Oaks. Her willingness to sign that contract, and the actions she took toward healing, demonstrated that she was willing to take responsibility for her own health. It is much harder to live with a mentally ill person who is not able to do that much.
There are, however, some problems with the contract idea. How would one determine compliance with a contract that includes such items as “Try to exercise every day,” and, “Work as much as you can”? Would spending a day sick in bed be a violation of that contract? Some of the behaviors of people with mental illness seem clearly out of their control; others are less clear. Where is the line? How can we live in community with somebody (ill or not) who does not behave responsibly and keep commitments? In what circumstances are the standards different for the mentally ill? These are serious questions, to which I do not have the answers.
Another problem I see in the contract is an imbalance. Delancey promised to take care of herself, and the health team promised to offer limited financial support for therapy and transportation to support groups. However, there was an implication that they could have her expelled from the community if she failed to comply with the contract. There was no promise from them to officially intervene on her behalf if she was deemed to be in compliance with her contract.
Discretion, Secrecy, and Sharing Information
It is hard to know how much intimate information to share in a large, nonintimate group, or how to do it appropriately. I have often wished the care group had been more discreet. On the other hand, we have been accused of having been too secretive. I think overhearing tense, low-toned conversations without knowing what was really going on was hard for many people. Some who had grown up in homes with a mentally ill family member were especially bothered.
The care group made many reports to the community, but we often heard little response. We got the sense that people hoped the issue would just go away. When the poll came, resentment and lack of information must have been widespread.
The confidentiality of the poll left Delancey’s allies feeling helpless. Without knowing who wanted her to leave, or why, there was no way to have a productive conversation. Did people know how hard we had tried to find a more suitable home for Delancey? Did they have other concerns which could have been addressed if we had known about them? We will never know.
Dealing With Unusual Situations
While it is important for a community to establish policies, procedures, and precedents, it is dangerous to substitute those impersonal institutions for human caring and flexible thinking. Sometimes, going along with the regular procedure in an irregular situation has catastrophic results. The labor hole policy is designed to remove members who are lazy and don’t care. Dealing with Delancey through that policy was inhumane. I wish that the care group had been able to interrupt the institutional machinery that was treating Delancey’s situation like a membership/labor problem rather than a mental illness problem. However, the culture at Twin Oaks is geared to operate in a certain way. Face to face dialogue and decision making are not expected; voting is.
The Power of Friendship
Many times, singly or together, Delancey’s close friends were able to help her break through from the frozen numbness of extreme isolation to the warmth of human connection. The tools of supportive listening that some of us learned from co-counseling were of tremendous benefit to us in this. Co-counseling is a peer counseling system in which one learns to face and feel emotions such as despair or fear without giving in to them. Putting those ideas into practice with Delancey taught me what a profound difference love can make. This remains one of the most valuable lessons I have ever learned.
The Health Care System
Delancey’s therapist was a caring and dedicated woman who gave Delancey her home number and allowed her to call when she was in crisis. I don’t know much about her psychiatrist, but I assume he had all the requisite degrees. The mental hospital served as a last resort, a place where Delancey knew she could at least be prevented from killing herself. In the end, all these intelligent and highly trained professionals were no more able to “save” Delancey than we were.
I suppose it is possible that the most brilliant or lucky psychiatrist in the world, with all the information we could have provided, might have hit upon some magical combination of drugs that would have made the difference. It is just as possible, however, that there was no such miracle waiting to be found.
Acknowledging the Limits of What We Can Do
Every other time there was a death at Twin Oaks, the community members drew together to support each other in the aftermath. Delancey’s death was different.
It is possible that Delancey would not have survived, no matter how much time, love, and support we gave her, and no matter how many different medications she tried. If we were to accept that her death was inevitable, then the most important question would be not, “How could we have saved her?” but rather, “How could we have kept the spirit of the community whole through the difficulties of her life and the tragedy of her death?”
What if we had treated Delancey like a person with a potentially terminal illness? Could we have graciously allowed her a few extra sick hours here and there, or a disability pension? Could the community have allowed those who loved her to give to her, without causing others to feel that justice was being violated? Could we somehow have responded to her needs as a united community, instead of a divided one?
Mental Illness in the World
Prevalence of Mental Illness
Are people with mental illness drawn to intentional community in numbers disproportionate to their prevalence in society at large? It is difficult to say. I have personally had more knowing contact with mental illness within the communities movement than outside of it, and I have heard others say the same thing. Many of us are motivated to look for another way of living partly from a feeling of not fitting in to mainstream culture. Surely that same feeling would tend to attract some people with mental illnesses. On the other hand, we get to know people more deeply when we live in community with them. It may be that we see more mental illness just because we are closer to people. Who knows how many depressed or medicated people we pass on a city street or interact with on a superficial level every day?
According to the National Alliance for the Mentally Ill (NAMI), mental illness affects 20 percent of all families in the United States. Schizophrenia and bipolar disorder affect one percent of the population each, and severe depression affects close to five percent. Alzheimer’s disease affects as many as 10 percent of those over 65 years old, and as many as 50 percent of those over 85. Every year more than five million Americans suffer acute episodes of mental illness. Grouped together, mental illnesses are the number one reason for hospital admission, account for 20 percent of all hospital beds in the United States at any given time, and are responsible for more missed days of work than any single physical disorder. The mentally ill, according to various estimates, comprise from one-third to one-half of the US homeless population.
Mental Illness, Fear, and Irrationality
People don’t think well when confronted with mental illness. It scares us, and we tend to want to distance ourselves from it. We have all been affected by the media portrayals of violent mentally ill people. In reality, very few mentally ill people are violent toward anyone but themselves.
Mental illness reminds us how fragile we all are. Each of us has our own carefully constructed view of the world as a stable and sensible place. To see somebody else lose that is terrifying. Many of us carry a secret fear that we, ourselves, could be crazy, and being around somebody in a psychotic state tends to intensify that fear.
Mental illness makes people angry. When we agree to live with someone, we believe that we are accepting a particular personality with which we have become somewhat familiar. When mental illness strikes, that personality may change radically, leaving us feeling cheated and betrayed.
Mental illness is bewildering. It is often hard to diagnose, and medical treatment is not always successful (as it is not always successful for other diseases, such as heart disease or cancer). It is easy to see mental illness as a murky whirlpool of confusion, endlessly sucking financial and emotional resources from the people around it. We do not want to wrestle with the difficult questions about how much we can afford to give, or when we should give up. It is easier to push the question away altogether and pretend it is not part of our world or our responsibility.
The amount of money spent researching mental illness lags far behind that spent on comparably devastating illness, such as cancer and heart disease. The degree to which severe mental illnesses are caused or influenced by genetics, brain injury, viral agents, early childhood abuse, life traumas, social isolation, or other factors is unknown.
Psychiatric medications have been de-scribed as a miracle of the late twentieth century. Indeed, they can enable many people with mental illness to function more or less normally. Some severely ill individuals may even get long-term benefit from carefully diagnosed medications combined with effective therapy and a healing environment. However, medications can also cause some highly unpleasant (and, in the case of antipsychotics, disfiguring) side effects. Also, they don’t work for everybody, and there is evidence suggesting that certain medications may actually inhibit long-term healing processes for people with certain diagnoses.
Over the past few decades, mental institutions have been closing their doors at a rapid rate. Mental patients are stabilized on medications as quickly as possible, and then released “into the community,” as hospital after hospital shuts down. Many of these people have nowhere to go, and approximately one-third of them end up in jails or on skid row. More than half are eventually readmitted to the hospital (often after a long wait), to repeat the cycle.
On the other hand, there is some anthropological evidence suggesting that people living in more tribal civilizations, where the word community has more meaning, have higher rates of spontaneous recovery from mental illness. People in nonindustrial societies who experience mental illness are generally not labeled, stigmatized, or isolated as they tend to be in our culture. They are more likely to receive the kind of nonjudgmental support from family and friends that facilitates rehabilitation. Can we, in the intentional communities movement, learn from these examples?
Supporting Delancey was hard work, and it was often emotionally draining. Many times over those years I, and others who later joined Delancey’s care group, set aside our day’s plans in order to try to help Delancey. Often we felt that we were failing. It was a heavy burden to try to convince a person that life is worth living, but we took it up voluntarily—out of love and the sense of possibility, and because we believed it was the right thing for friends to do for each other.
Being with someone in an extreme state is tremendously informative about what it is to be human. Frightening and confusing, yes, but also deepening. Hard as it was, the whole experience was undeniably real. I learned about love and intimacy in a way I might never have known if I hadn’t dared to get close to Delancey.
We have grown accustomed to shielding ourselves from sick people of all kinds, and even from normal aging. Finding Delan-cey’s body stiffening in the cab of a truck on a sunny summer morning changed my understanding of life and death forever.
The only true guarantee that comes with human beings is death. All else is unknown. We cannot create utopia by throwing out the difficult surprises that people bring our way. If we were running a summer camp, we would send a sick person home. If we really want to create intentional community, however, we have to accept that we are home.
Advice for Communities
Educate yourselves about mental illness. Pay attention to current medical research, as well as alternative theories. If you read pop psychology books, take them with a large dose of salt.
If you or someone you know is seeking psychiatric treatment, be involved. Strongly consider taking NAMI’s free 12-week program for family members of people with mental illness and subscribing to NARSAD’s newsletter (see resources at the end of this article). Don’t assume that a doctor or psychiatrist knows everything. Many of them do not have time to keep up with current research on everything in their fields. Find out all the names of all the medications prescribed, and do your own research.
Talk in your community about how you would handle it if one of you developed a disability. Put this in a broad context: from Alzheimer’s, AIDS, and arthritis É through wheelchairs. What are your commitments to each other? What are the realistic limits of your resources? If members develop a serious disorder will they probably have to leave? If so, better to have it understood up front than to surprise someone with it in their time of greatest need. If a full member is forced to leave, can the community commit to helping them find another place? Encourage everyone to have a backup plan, in case it doesn’t work out for them in the community. It’s no good to feel trapped in a community.
Discuss whether you want to try to screen potential members based on their risk of physical or mental illness. Realize that although you can try to manage your risks, you can’t know the future. Attempts to screen out people who are potentially unstable are likely to deprive your community of some wonderful members, and some people who appear stable will develop a severe illness anyway.
Discuss your community’s attitude toward psychiatric medications and involuntary hospitalization. If a member is diagnosed with a mental illness, does taking a medication for that illness become a requirement for continued membership? If a member is acting peculiar and others are concerned or frightened, at what point will you involve the law?
Recognize extraordinary circumstances. If you suspect that a problem with a member (such as causing disruption or failing to meet community obligations) might have a mental illness component to it, don’t ignore that aspect. If your community operates by consensus of the full group, have an alternate plan for when quick response is necessary and everyone can’t be gathered. Make sure that the people making the decision have as much information as possible.
If you purchase health insurance, make sure major mental illness is covered. (Several states now have mental health care parity laws, thanks to the work of consumer advocacy groups like NAMI.)
If you live most of your adult life in a situation in which you are not paying social security taxes, [working for room and board, or living in an income-sharing community with 501(d) tax status, for example] you may not ever qualify for social security benefits, including disability. Find out what your situation is. You may want to pay those taxes!
Being compassionate does not require surrendering appropriate boundaries. Don’t let your compassion and desire to help turn into codependence. It is not sustainable to always be willing to drop what you were planning to do in order to be with someone in crisis, especially if those crises occur frequently. It breeds resentment among the other people to whom you are responsible. Behaviors that endanger the community or other people should not be allowed.
Create a structure that fosters trust and intimacy in your community. Set aside time and space for talking at a deeper level than is possible at the dinner table or during a business meeting. Share your stories, your fears, and your hurts, and listen to those of others. Stretch yourself a little. That way, when real crisis comes, you’ll be better prepared to handle it together.
- National Alliance for the Mentally Ill (NAMI) has chapters throughout the United States. They sponsor education programs, including a free 12-week course for family members of people with major mental illness, the Family to Family Education Program. Call or write to their central office for information about activities in your area. 200 North Glebe Rd, Suite 1015, Arlington VA 22203, USA. Tel: 800-950-6264. http://www.nami.org/
- Global Alliance for Mental Illness Advocacy Networks (GAMIAN), c/o IDEA, Via Statuto 8, 20121 Milano, Italy. Tel: 39-02-65-3994. http://www.gamian-europe.com/
- National Alliance for Research on Schizophrenia and Depression (NARSAD) provides major funding for research about depression, bipolar disorder, schizophrenia, autism, attention deficit disorder, obsessive-compulsive disorder, anorexia nervosa, drug addiction, etc. The NARSAD Research newsletter contains information on cutting-edge research. 60 Cutter Mill Rd, Suite 404, Great Neck NY 11021, USA. http://www.mhsource.com/NARSAD.html
- National Institute for Mental Health (NIMH) is the US government agency responsible for researching mental illness and approving treatments. Public inquiries: 6001 Executive Blvd, Rm 8414, MSC 9663, Bethesda MD 20802, USA. Email: [email protected], http://www.nimh.nih.gov/
- There are two major organizations that teach co-counseling. Both offer tools and a structure that people can use to give and receive emotional support. While their counseling techniques are similar, their organizations are quite different. Re-evaluation Counseling¨: http://www.rc.org/ and Co-Counseling International: http://users.multipro.com/circle/index.html
- The Process Work Center treats “extreme states” as part of a continuum on which we all exist. 2049 NW Hoyt St, Portland OR 87209, USA. Tel: 503-223-8188. http://www.processwork.org/training.htm
- Shorter, Edward. A History of Psychiatry: From the Era of the Asylum to the Age of Prozac. New York: John Wiley and Sons, Inc., 1997. (Not as well-balanced as the following reference, but easier to find.)
- Warner, Richard. Recovery from Schizophrenia: Psychiatry and Political Economy. New York: Routledge, 1994. (Especially interesting are the chapters on schizophrenia in the third world and on antipsychotic drugs.)
1. Much of the information in this section came from the following: Warner, Richard. Recovery from Schizophrenia. New York: Routledge, 1994.
Rajal Cohen lived at Twin Oaks from 1990Ð94. She left to found Abundant Dawn community with a group of other experienced communitarians. She now lives at Dayspring Circle, at Abundant Dawn community (see the Community Listings). She can be reached via email: [email protected]