Archive for April, 2012
Words matter. Millions of people have found out that life is less for them because of what the culture around them calls them. They find the label of disability serves as a verdict of the kind of person they are, the kind of person they can become, a verdict of their ability to love and their chances of being loved, a description of what life means and their role in it, and a sentence to a life of lesser access to the events, resources, and experiences that give life hope, happiness, and meaning. They are, in others eyes, defined by what is difficult in their life- not by what they care about, what they hope for, who or how they are loved, or by where their passions and abilities lie.
The “truth” they are sold is that what is difficult for them is all that is important, can be important, or will ever be important in their life. They are treated as everything about them- their feelings, their thoughts, their decisions, their relationships, their values, their hopes- are somehow symptoms or expressions of their “disability.” They face this “truth” every day and hear it in countless way, both spoken and unspoken. If they choose not to accept it they are viewed as unrealistic, delusional, and a victim of their own self deception. In fact they are often told that their inability or unwillingness to accept how limited they are is, in itself, proof of their limitations.
Sometimes between the lines, sometimes openly they are told that because of their disability, their problems, their issues that they have a life not worth living. And they find that message amplified and reinforced in the culture around them, in the way people talk about them and in the expectations people have. Not only are they told their life is not worth living, but too often in ways subtle and not subtle they are treated that way.
They are fitted differently into the social fabric around them. Prejudice and stigma are everyday experiences for most. Opportunities that for others are a given are a battle and struggle for them. Sometimes they just don’t exist. Employment is harder to find, if it is found at all. They are often financially worse off because of this and things like housing, food, and medical care are problematic.
When they need help they find out in terms of public policy they are disposable. Services of virtually every kind are marginal at best regardless of where they live. When budgets are developed and cuts are considered services for them are among the first on the chopping block. Many people at their most vulnerable find themselves left to their own devices. For example, many states are cutting already skeletal mental health budgets by enormous amounts. People who right now are inadequately served will not be served at all. The consequences are widespread human tragedy.
Thousands and thousands of people have raised their voices to address these issues. Yet for most people labeled as disabled they are daily dehumanized and disregarded. Human rights are for them awash with qualification. They find themselves marooned in a strange land that on one hand tells them they cost too much, expect too much and ask too much and on the other hand tells them the cost of the help they seek is to surrender their right to make decisions about their own life and to accept a definition of themselves that makes much of what they want out of life unllkely or impossible.
There is among many people an effort and a conversation about how to move toward communities of compassion. In virtually every area there are people trying to find ways to make compassion an effective reality in their lives and the lives of those in their community. There is a growing recognition that caring about other people as people is not an unrealistic goal, but the essence of being realistic in a time when much social interaction is calling names and noise.
We seem to be becoming increasingly a culture of warring tribes. What binds us together and gives us common identity seems increasingly fragile and insubstantial. If you are different (rather you be called disabled, sick, or whatever) you are likely to be the victim of tribal warfare. The beginning is to know that none of us are simply the names we are called or the ways we separate ourselves from others; It is to know that life can be better for all of us and that part of the measure of that possibility is how well we care for others regardless of their place in the pecking order. It is to know that in caring not only do we help others but in the end plant the seeds for our own growth and happiness.
Linda and I would love to hear from you if you share some of our concerns. We would like to be a part of a conversation about moving towards a larger community of compassion. Whatever your experience, whatever the context of your life we would like to talk further with you. It is in the conversations that we have with each other that there is most hope for wider impact.
May each of you and all those you care about be blessed. And perhaps most importantly may those who have no one to care for them be blessed with the care of another human being.
If life is in any way a journey there are two questions we are always answering.
One is a question of content. How are we doing? How effective are we? How are things working out? What can I do to make things better?
Much of our life is content. It is about getting and keeping. It is about matching up and having enough points. It is, we know and believe, ultimately a referendum on us. The tally is an index of our worth, our status and our prospects.
There is nothing wrong with this as long as we realize that life is also process. It is more than how we are going. It is about where we are going, what we are becoming, what we are part of and what it all means. It doesnt matter how well the car runs if where we are going is not worth the going.
Knowing the process keeps us in touch with what is important. When we lose process life is dominated by urgency. Our moments are a succession of what we have to do or need to do. With all of our efforts to get and keep we too easily find ourselves with nothing worth having.
We tire easily of good advice- even when it really is good advice. Much of what passes for treatment is some version of good advice. “Do this and life will be better….” “If you do this then problems will not get out of hand again…” “This is the only way to cope with your disease….” But when advice somehow threatens what we are used to or leaves us unsure and afraid we seldom have trouble talking ourself out of it.
For some others they embrace it and it produces a new legalism as they strive to compare their recovery with that of others. It gives them a way to be right and a ticket to expertise.
But recovery is more- much more- than good advice. It is good news. It is about vision and possibility. It gives us new sight and passion for a possibility never before seen or believed. In stories told it gives us hope for our own stories.
It is not about convincing someone that something is good enough to do. It is not in convincing people how they need to be different, but in showing them their real hope is in the value they share with other human beings.
Thanks to my good friend Ed who helpd me to see much about “the chains that bind.”
We all have chains that bind. Sometimes they are so ordinary, so everyday, so unquestioned that we stop being able to see them. They become strongest however not just when they become invisible, but when they become the way we see anything. Sometimes the things we cant imagine living without are indeed the jewels that help give life meaning and purpose. Sometimes though they are what strangle us and leave us tangled in uncertainity and fear. When that happens our very attempts to “make things better” only make things worse. How many of us have trid to make deals with the things that are destroying us?
I know I have and still do. How many times is the “only choice” a choice not to choose? We can all learn to become comfortable with misery as long as we convince ourselves that it is not too dangerous and it is our only option to more misery.
How many times do the things that we think define our comforts and safety come in reality to assure our misery?
Just some things to think about:
We wont know until tomorrow or Tuesday but there is at least some optimism that the amendment to restore funding for peer support centers in Tennessee at the same level they were funded at last year’s rate will be successful. If it happens, as it looks like it might, it truly will be a triumph for the advocacy efforts of many people at multiple levels.
Another patient has died at Middle Tennessee Mental Health Institute. This one was fatally injured in a fight with another patient. What happens when the place you put people to keep them safe from themselves leaves them in danger at the hands of others? I dont know any more of the particulars than anyone else who has read the papers. I am sure staff did what they could, but it does shake my faith. Some people are dangerous. But what about the people who, if they had access to a better community system of care, would never have been there? We just dont seem to do a very good job, even in psychiatric hospitals, of predicting violent behavior and I cant help wonder how many people are put in harms way that under better circumstances might never have been at risk? A very real tragedy….
AOT (assisted outpatient treatment) has finally made it to Tennessee. A pilot program in Knoxville serving 10 people has been okayed for 2 years. The cost is 125,000 per year. 12,500 per year for each person in the program in case your calculator doesnt work. That figure does not include any costs for new services. It is just the cost of making mandatory the services they are already eligible for. Given the tremendous gaps in services I cant help but wonder. No matter what your enthusiasm for flat tires I still think they are flat tires. It matters what you commit people to. The money comes for the savings coming from the Lakeshore closing. That money was supposed to go to improving community resources. Maybe I am wrong (I frequently am) but a very cynical part of me believes that in 2 years AOT will be a shining (political) “success” and real pressure will be brought to bear to eat up a much more sizable portion of the Lakeshore savings to “improve the community mental health system.” I hope the experiment is closely watched and we think clearly before we decide to apply the lessons we have learned from 10 people to everyone else.
If you havent looked at the previous post please do so. It is a link to an editorial that I found in a paper in Iowa. They had a 14 year old boy kill himself as a result of bullying and the editorial addresses the issue as well as anything I have read.
So many of us seem so cruel so easy. I watched “Hotel Rwanda” tonight and just shook. I am astounded at how calling people names seems to make it so much easier to be mean.
Maybe kindness is more of a miracle than we ever give credit for.
Levon Helm died today. A great gift and a great loss.