The Coalition for Community Living Blog

A Post by John K. Trepp - Radical Element At Large

Years ago, I was invited to participate, along with others, in a panel of “experts” in front of an auditorium of folks attending a conference in Indiana. As the discussion progressed, the question was posed, “What should be the goal of community mental health treatment for adults diagnosed with schizophrenia?”

The rest of my panel was in firm agreement: that the ultimate goal should be for such folks to live “Independently.” Pressed, by me, they defined “Independence” as having one’s own apartment (no roommate). A “mental health professional” checking in on you periodically (as often as daily) did not disqualify one from being considered “independent,” nor did unemployment-driven reliance on various forms of financial support such as SSI, food stamps, “welfare,” or family money. The other three panelists were insistent that “Independence,” i.e., living alone, was the ultimate measure of success for adults diagnosed with schizophrenia?

Always the contrarian, I asked, “Why?” Briefly befuddled, as though I had asked why the sun comes up in the East, my fellow panelists quickly assured me that living independently is what “normal” people do, and adults diagnosed with schizophrenia crave normalness.

I had, still have, mixed feelings about the latter. Do adults diagnosed with schizophrenia really crave normalness? Maybe, I’m not sure. (I welcome reader’s thoughts on this.) But I chose to pursue my skepticism of the first part; is living alone really normal?

I commandeered the microphone we had been passing around, and addressed the audience. “How many of you,” I asked, “are currently living alone? I’d like a show of hands.” Out of roughly 80 to 100 people in the auditorium, two hands went up. So much for living alone is normal.

Was this audience a completely random sample? Maybe not, but 80 to 100 people is a respectable sample. Were there audience members who were living alone but were embarrassed to raise their hands? Maybe, but why would they be embarrassed if living alone is normal.

One of the hands was a young woman who appeared to be early-20s; the other an old woman who appeared to be at least in her 70s. I chose not to embarrass either by asking if they were happy about living alone, or if they considered living alone a mark of success?  But my guess is, the candid answer would have been “No.”

I’ve never lived alone in my life. I went from my nuclear family to college roommates, to marriage, and I dread the thought of living alone. Don’t get me wrong; I don’t need to have people around me all the time. I enjoy “my space;” I enjoy a quiet evening, or even a weekend, alone. Now and then. But I find that a little solitude goes a long way.

My older daughter did not marry until her early-30s. After college, she mostly had roommates, but there were a few periods when she lived alone. Fortunately, she is blessed with excellent social skills. And during these periods of living alone she had two jobs, was active in her church, on softball and volleyball teams, in two book clubs, plus many friends outside of all these connections. And she still spent a lot of time with us – because she was lonely.

In my experience, having worked in the field for roughly 40 years, people with schizophrenia, and other serious mental illnesses as well, don’t always have excellent social skills. They don’t always as many social connections as my daughter had when she was living alone. And they get lonely living alone. Some recognize their loneliness as a problem; others may say it’s a “choice” they make. But is it a healthy choice? In relationship to one’s illness? I wonder.

Another argument I hear when discussing the virtues of “Independence” is that adults are supposed to be Independent. But here again, I’m not so sure. Noted author Stephen Covey describes the 3 Stages of Human Development as:

1. Dependence, which is appropriate for infants and small children:
2.  Independence, which is appropriate for adolescents and teenagers; and
3. Inter-dependence, which is the appropriate stage for fully developed adults.

My wife and I will be celebrating our 50^th anniversary this summer. I love my wife and she says she loves me. Neither of us have ever tried to kill the other. (Both thought about it, maybe.) But do I believe that she was the “only one” I could have been happy with? Or me the “only one” she could have been happy with? That sounds like a second-rate novel.

I’ve been a pretty good husband and she’s been a wonderful wife; both of us are capable of being kind and considerate. But each of us is also capable of being selfish and stubborn, and sometimes we annoy the heck out of the other. We’ve stayed married because the good times outweigh the bad times, and we’ve both committed to making it work. Fifty years, three kids and five grandkids, and our relationship remains a work in progress. And that’s perfectly normal; we don’t live in a fairy tale.

Human beings are not intended to be “Independent.” Chimpanzees, our closest relatives, live in small groups. The indigenous peoples of North America lived in small groups; as did the European, African, and Asian ancestors of those of us not indigenous. The Homestead Act wasn’t a social break-through; it was a military strategy.

And there is nothing coincidental about our natural affinity for small groups; a million years of human evolution has taught human beings to live in small groups. It is not at all unreasonable to suggest that the current fad of people living alone, interacting with other humans exclusively through electronic devices, will be a failed experiment.

Am I capable of paying my own bills, cooking my own meals, doing my own laundry, planning my own social schedule? Probably. But do I want to? The inconvenience of having to negotiate with my wife/roommate about what to watch on TV and which couple to have dinner with. is a heck of a bargain for having the reliable emotional support of another human being.

I know that some will jump on my example to suggest that comparing marriage to Lodge Membership is absurd. But that’s at least in part because we have vilified small-group living, and mythologized marriage. Both are voluntary (in the case of the Lodge) and both require hard work to make the relationships work. And both sometimes they don’t work out.

The “Tyranny of Independence” is a phrase coined by the late Dorothy Berger, the Founder of Tasks Unlimited and my long-time mentor. Dorothy coined the phrase to describe the unfounded yet persistent skepticism from the mainstream (and often dysfunctional) mental health system.

During my three-plus decades of working with Lodges, I was occasionally accused of under-estimating the potential capability of people with schizophrenia and other serious mental illnesses. “Can’t you at least try to help people live independently before committing them to life in some pathetic group setting?” I was asked repeatedly.

And I would shake my head:

1. I was not in the business of helping other people live “independently,” because I don’t think it’s a good idea. For anyone!
2. Doesn’t it seem oxymoronic that other people would need on-going assistance to live “independently?”
3. Again, Lodges are voluntary associations; people choose to join a Lodge, and generally choose to stay.
4. And group living does not need to be “pathetic.” Lodges can be warm, vibrant and very supportive of a variety of lifestyles.

There’s proof! The Lodge Members of one current 4-man lodge range in seniority from 18 to 40 years. That’s right; the most senior member of this Lodge has lived there 40 years, and the “new guy” 18 years. And there is nothing pathetic about these guys:

• Three of them work full-time and are financially independent;
• Two of them own a fishing boat and motor together;
• One hunts (deer & ducks) with his brothers;
• One has a steady girlfriend;
• One is close to his son, who lives out-of-state and stays at the Lodge when he comes to visit;
• One is active in his church;
• One has keys to the neighbor’s house and waters their plants and feeds their dog when they’re out of town;
• One serves as the back-up driver for other Lodges in the area when they need one, on top of his full-time job.
• And all have saved substantial sums for their eventual retirement, if and when they decide to retire.

These guys aren’t “surviving” in the community, they’re thriving!

The irony of the persistent skepticism about Lodges is that the skeptics, the ones describing group-living as “pathetic,” are promoting the idea of folks with schizophrenia and other serious mental illnesses living “independently” –

-- In poverty, in a subsidized apartment, lonely as heck, dependent on expensive paid care-givers --

-- For a while until they decompensate. 

While Lodge Members are with similar illnesses and histories are employed, living in nice homes in nice neighborhoods, without any on going subsidies – and not becoming ill again.

Who is it that of under-estimates the capability of people with mental illness?