Note- The analogies used in the post below are not original to me. I first read them in a book called, “Health, Medicine, and Justice” written by Joshua Freeman. I use them in a little different way than Freeman does but I think our message is the same. Much thanks to Art Sutherland for making me aware of this book. It is a book that anyone who cares about justice and the medical system should read.
One of the greatest inadequacies of the medical model is the idea that you can truly understand someone’s behavior by figuring out what categories to put in in, what labels to apply to it. It is not possible to understand how someone lives apart from the context of their life.
All of us live with distress, with pain, with stress. All of us know unhappiness. All of us know something about deprivation and threat. For some of us at some seasons of our life there seems to be little else. For some of us the stress of getting by, of getting from the beginning of the day to the end without catastrophe, without loss and attack is simply overwhelming. Life for some is about what is going to go wrong next and how are you going to cope and will you make it or not. It has been that way for me more than once.
Everybody lives with a different degree of risk. Life is harder for some of us than for others.
Some of us live on the cliff. People who live on the cliff are the ones most likely to fall off.
There are many things that take us closer to the cliff. For some the cliff seems a permanent residence. For others it seems more a place visited than a place lived.
1. Past experience. Aversive childhood events (ACE’s) have a profound influence on the context of our lives. Studies of people who face many problems in their lives often show a history of ACE’s. Where you have been affects where you are.
2. Poverty. Being poor affects your experience of life as much as any single thing I believe.
3. Housing. Lack of safe, affordable housing affects your sense of what life is about, who you are and what you can expect from other people. Aside from the day to day overwhelming stress of lack of good enough housing it tells you a lot about how much you matter and how threatening daily life can be.
4. Food. People dont do well in life who dont have enough to eat and who dont have enough healthy food to eat that they can afford to eat. If eating enough, eating often enough, or what you can afford to eat are part of the daily stress of living then it is likely that the daily stress of living is overwhelming to you.
5. Health. Do you have a real opportunity to be healthy? Many of the above items relate to your opportunity to be healthy, but in this case I mean do you have the opportunity to get adequate and effective health care? People who cant get preventive care, people for whom little deals become big deals, people who cant get care for serious conditions often face growing problems. People who suffer, who with a fair access to help would not necessarily suffer, live often with a overwhelming degree of daily stress. They know what it means to hang on.
6. Jobs. Do you have a job that enables you to get what you need to lead anywhere close to the life you want? Do you have to work 2 or 3 jobs to make ends meet? As one person told me: “I am forever a window shopper at the store of life.”
7. Danger. How much do you live with daily danger? Every community has its own dangers. How much does your experience of daily danger define the context of your life?
8. Race. It shouldnt make a difference. It does.
9. Past experience with help. When you have tried to get help in the past do you find you could access help that mattered? Did “help” make things worse. Was the system more a source of threat or a source of opportunity to make life better?
10. Social support. People do better when they have a source of meaningful and trusted connection with others. Do they have a sense of in someway mattering or is their daily experience that they are alone and dont fit in? Life is what we do with other people and when there is not a sufficient “with” it is much more likely life will be hard.
11. Trauma. This is also dealt with in the first item but in this instance I mean more ongoing trauma. Are you living with ongoing injury and hurt? Is life about attack and defense for you?
12. Relationships. Does someone care? Is there someone that it matters to that you care? Are you alone?
13. Drugs. Sometimes the things we do to medicate our misery in the end bring the most misery to life.
14. Personal strengths and weaknesses. All of us have things we are better at and worse at. We all have our burdens. We are not blank slates. Somethings feel like destiny. Others feel like challenge. What we make of what we got matters more than what we got. I recommend you look at the research of psychologist Carol Dweck if you would like to read further on this.
All of these things and more are risk factors. They take us closer to the cliff. Much of life is about what we make more likely or less likely and while it might be simplistic to say that any of these things by themselves is the cause of disaster in life they certainly make it more likely. All of them in some way push us closer to the cliff and make it more likely we will fall off.
There is one line of thought that says simply that people dont fall off the cliff- they are propelled off it by a “mental illness” that is chronic in nature, that most of them dont know they are being propelled off the cliff, that the most life can be for most of them is to perpetually teeter on the edge and that those worst off and most serious life will always be at the bottom of the cliff.
Psychiatric hospitalization is basically a bottom of the cliff intervention. To my knowledge there is no evidence that it helps people to move back from the cliff. Proposals for the “new asylums” are basically proposals to make people comfortable at the bottom of the cliff, that they will never make it back from the cliff and kindness dictates we not try to make them.
There is another analogy from the book I really like. A man sees a body floating down a stream. A few minutes later another body is coming down the stream. Then another…and another…and another. By now a whole crowd of people are trying to get people out of the river. And it is becoming really obvious they cant keep up the pace. One man quietly speaks up. Perhaps we should go upstream and see what is putting people into the water…..
Coercive interventions are downstream interventions. Recovery is an upstream intervention.
Deal with what makes catastrophe more likely. Deal with differences that make a difference. You cant help people to build a better life independent from the context of their life. Things will still get messed up. Human beings have an amazing propensity to solve life by messing it up and then coming up with a thousand good reasons they had to deal with it but still it matters. If you make distress, stress, pain and misery less likely to happen they tend to happen less likely.
Move people back from the cliff.
And hope really matters.
Some time ago I wrote a post called “A mental health bill of rights”. It was an attempt to describe at least in part an upstream mental health system. It is one way to look at the task of helping to move people back from the cliff:
1. I have the right to be treated with dignity and respect regardless of the severity or numbers of problems or difficulties I may have.
2. I have a right to be treated with honesty. I should be able to expect not to be manipulated into any particular course of treatment. My questions and concerns should addressed honestly and openly. The treatment recommended me should be a function of my needs and not the philosophical tenets or personal prejudices of providers.
3. I have a right to have access to all the information I need to make informed choices about any treatment I might seek. The positives and risks of any prescribed medication should openly be explained. Decisions I make about me should be honored and accepted.
4. I have a right to expect that the treatment recommended for me be a function of my assessed needs and not simply a function of my ability to pay for those services.
5. If legally I am judged not able to make decisions for myself any involuntary treatment should be based whenever possible on guidelines set by me when I was legally competent. These guidelines may include choices of facilities and medications to be avoided.
6. I have a right to have access to the most effective treatment possible. This treatment should focus on helping me to developing the skills and tools I need to maintain stability in my community, personal independence, and success.
7. I have a right to be honest about any issues I have and seek the help I need without fear of retribution, prejudice or discrimination. I should not have to fear loss of job, housing or social position based solely on a mental health diagnosis.
8. I have a right to expect adequate and effective health care. I should have a right to expect that my complaints and concerns be taken seriously and not dismissed as a symptom of my issues.
9. I have a right to expect that any professional dealing with me will realize that there is a significant chance that trauma and injury have been important issues in my life and that they have training on helping people deal with these issues and a trauma informed sensitivity in their interactions with clients.
10. If I am incarcerated or come into contact with the correctional system I have a right to expect that the staff I contact will be trained and skilled in dealing with the types of situations they may encounter me in. I have a right to expect to be safe and to expect not to be traumatized in my interactions with them. I also have a right to expect I will have continued access to needed treatment.
11. I have a right to expect access to substance treatment as needed. I may well have more than one issue to deal with and each issue should be treated as important in and of itself and not simply as a symptom of something else.
12. I have a right to expect I will be treated as more than a mental health diagnosis. My values, my goals, my ideas and my sense of purpose in life should never simply be regarded as a symptom of whatever issues I have. Many many things may be difficult for me but nothing that is difficult for me makes me deficient as a person.
13. I have a right to expect to be treated like other people can care and connect with me and I can do the same with them.
14. I have a right to expect that others will treat me as having the capacity to develop the skills and tools that will enable me to find a better life. Hope will be treated as a realistic perception of me and my life.
15. I have a right to expect that all the problems in my life will not be reduced to expressions of mental health issues. Poverty, hunger, homelessness, racism, crime and many other things are very real problems. I am entitled to same chances to fairness and justice as anyone else.
How we care about and how we care for people matter. If we did a better job helping people stay off the cliff perhaps there would not be as many debates about what to do when they fall off.