I believe the voice of ordinary people should matter. More importantly I believe it can matter. To often it does not.
“Nothing about us without us” is a great idea. It is a value worth making real. Too often it is not. With so much in the public debate about involuntary treatment and an almost romanticization of asylums and psychiatric hospitals this is a disheartening time for many people with lived experience. It is time, long past time for voices to be heard.
I spent this weekend in Chicago with the DBSA talking about a pilot program they are launching to make that happen. Nationwide there are over 50000 people in DBSA support groups. In Tennessee alone there are over 2000.
A large portion of them have been diagnosed with bipolar disorder and they are the people who put lie to the notion that recovery is a gimmick or fanciful notion for people with “serious mental illness.” They are a wide range of people some doing poorly and some doing well. They are united by a common faith that life can get better and that nothing is closed to them or should be closed to them because of their diagnosis.
The DBSA idea is to develop grass root advocacy organizations that leverage and extend the influence of their support group members on public policy that affects them.
6 states have been identified to test the notion and develop and refine the processes that can make it a nationwide reality. I am the chairman of the Tennessee grass roots programs.
Many times issues arise on a state, local or national basis that affect mental health and the call goes out to “call your legislator.” The result of that call is often less than hoped for and advocates are left to wonder why people are so apathetic about something so important. This illuminates a central insight which is a foundation to what we hope to accomplish in Tennessee. To many efforts fail not because of the action proposed or what people want to accomplish. They fail because organizations assume they have the capacity for action rather than realizing that capacity must be developed and grown. Capacity must be planted and nurtured as if a flower worthy of bloom. Many great ideas die from the inability to do, from the lack of capacity for effective action. The development of capacity is one of our prime goals. One definition of capacity would be to have enough people to act who believe that things can get better if their ask, their cause becomes reality, who believe that what they do makes a difference in service of that goal, who believes they have the ability, knowledge or skill to do what matters, who feel supported in their efforts and who feel like the whole effort has meaning and purpose
By no means are all the ideas in this post mine. Phyllis Foxworth national director of advocacy for DBSA has had decisive impact on many of them. The grassroots organizations of Illinois and New Jersey are helping to already put some of these ideas into real life and polishing them and refining them further. People from Florida, California, Washington DC, and Texas were also represented this weekend. It was and is a communal stew. This post tries to describe what it might look like in Tennessee.
Our plan can be conceptualized on several different dimensions:
1. Principles How do you get people to actually step into action? Many organizations I have been part of assume this is automatic or simply a matter of effort it isn’t. The principles of getting people to act were alluded to earlier in this article and described more fully in another post. Briefly they are: Encourage People must believe that things can get better and that part of things getting better are in what you advocate for. Empower People must believe that they can do something that matters, that makes a difference in making your ideas real. Educate People must believe that if there are things to do they cant do they can learn how and you can teach them. Support People must feel like they will be supported in their efforts. They need to know they are part of a web of connections. Confirm People must believe that this is a meaningful effort and have a sense of purpose. Advocacy must be worth the effort, the pain, the struggle, and the risk. Everything is a matter of degree and to the degree these things are true it is likely you will have a true advocacy community.
2. Leadership Roles There are several key roles in developing this kind of organization. Some of the roles identified for the DBSA organizations include: Recruitment finding people who will be part of the organization. Basically it is advocating for advocating. It is getting the word out, contacting those interested, assessing that interest and getting people to commit to action. Partnerships and coalitions DBSA is not the only advocacy organization in Tennessee. We are not competition for anyone, nor them for us. The role of the coalition person is to reach out to other organizations and identify ways we can connect and work with them. It is foolish to reinvent the wheel when others are driving cars. Policy These are the people responsible for researching facts and helping to identify issues and formulate positions. Actions These are the people who are leading in the formulation of possible actions on issues.
It is possible to identify other roles. In a real sense everyone involved will do all these things. The idea of leadership roles is to help maintain focused effort in each area. Leaders are really more facilitators than anything and hopefully there will be multiple people in each role. Organizations dependent on the personality of one person tend to be very unstable and likely to fail.
3. Levels of involvement It is ok for people to be involved at different levels. For some people an email to a representative is a big step. Others may do more. There is no “real advocacy. ” You must meet people where they are at and by doing that increase the chances that in time they will be able and willing to do more.
4. Issues It is important to know what you are about and what you are for. Issues should be clear and concrete. You should know what you want and what you want should be achievable. You should have an idea of how to get it that is practical. And finally you should have a way to know if you got it that is measurable. If you are confused about where you are going you don’t tend to get there. If you try to go too many places you tend not to ever leave. What starts in confusion doesn’t just end in confusion…it ends.
We are at the crawling stage right now. The obstacles I am sure will be many and strong. We don’t know the answer because we don’t know the questions.
A friend once told me that much mental health advocacy was a circular firing squad. Our goal is to straighten the line and go after targets that make a difference. If you live in Tennessee and would like to be involved we would like to hear from you. You need not be involved with the DBSA. If you are in other states doing similiar things we would love to talk to you and share stories and experience.
Everyone should have access to quality mental health care. And the time to act is now.