Thursday, April 7, 2011

Truth Telling

Last night I had dinner with a wonderful woman who also had a parent with mental illness. She has become a therapist and expert in trauma recovery, focusing on mind-body healing. In our conversation we talked often about truth telling and being authentic. To whom do you tell the truth, especially when the truth is something they don't want to hear? What is the purpose of truth telling for someone who has been the survivor of abuse, whether through direct attack or through the willingness of family, friends or the larger health system to turn away and pretend ignorance?

This reminded me of a plenary speech I gave in Montana last year. Below is the section of that speech that captures my reflections on truth telling:

The invitation I received to speak with you today included a request that I share my story, my mother’s and my grandmothers. First, I want to note important issues related to disclosing another person’s story. There is an interesting tension regarding disclosure, respect and privacy in mental health. Talking about my experience as a daughter and as a woman who has recovered from serious trauma and disclosing the experiences of my mother and grandmother are different things. People in mental health consumer rights would know that sharing my mother’s story is something she needs to approve. My mother passed away, in fact, all of my parents have passed away. However, I had daily conversations with my mother until she died and I know that she would have approved of my sharing what I know of her story because she was passionate about human rights for people with mental illness and proud of the work I have been doing to speak out on behalf of parents with mental health experiences.

But that is not all that I would like to say about disclosure. Why is disclosure important and helpful? What does it mean to disclose appropriately? What are the professional norms that create a chilling effect and sometimes a judgment against people who disclose?

To me, dynamics regarding disclosure are related to issues of power. Before I share how this power dynamic impacts me, let me parallel this chain of thoughts with experience I have gained in my professional work. Professionally my experience is largely program development for people impacted by large-scale human and natural caused disasters. My work has led me to work on behalf of people who were victims of torture, refugees and communities impacted by the World Trade Center disaster. Working on behalf of whole communities that have experienced injustice, I have learned the importance of public truth telling as part of healing and regaining a balance of power. This is also true for people who experience private abuse such as domestic violence, molestation, and rape.

Speaking publicly regarding events that have been internalized as shameful has two positive and clear results.

One, for the person who has internalized a “secret”, speaking openly releases the false belief that what happened is somehow shameful.

Second, speaking openly changes power inequities between groups of people. When one group of people has an experience and another group denies the reality of that experience, a power difference is reinforced. This closes possibilities for genuine dialogue. In the worst-case scenario, a perpetrator denies the reality of his/her victim in public and insists on secrecy. On a broader level, entire groups of people can be culturally trained to deny the experience of other groups of people. As I say this I realize some people might think I am taking specifically about mental health systems, but I am not, per se. I am thinking of a wide range of situations, from experiences of systemic racism to incest. However, the relevance of truth telling within mental health systems is increasingly important to address historic injustices and move forward toward healing.

What I am simply saying is that speaking openly about things that have been hidden or invisible is empowering, liberating, and changes the internal beliefs within people who have felt that they should feel shame about their life experiences. Disclosure, then, is an important tool and can have a deliberate impact. This is why we have books with titles such as “speaking truth to power” and “truth and reconciliation” efforts in places like Liberia and South Africa.

In mental health we are now looking at truth telling in topic areas such as addressing seclusion and restraint, use of jail systems to house mentally ill people and other systemic abuses of people who struggle with mental health issues. There is much more truth telling and reconciliation to be done in our experience as people directly or indirectly impacted by mental health systems.

Regarding disclosure: We all come from cultures that define what we think is appropriate or not appropriate to share. This can vary from state to state, from class level, from ethnic background and from professional training. What we must strive for, however, is genuine dialogue. We must strive to acknowledge the experience of others.

In my case, I come from a group of people you have probably not heard about. My group is sometimes called “invisible children”. I will discuss the concept of invisible children in my workshop tomorrow. For now I can simply say that I am one of millions of people who have had an parent with mental illness.

Wednesday, April 6, 2011

Resources - Update

In response to my “what holds us back” blog entry, I received an email from a Daughters and Sons Initiative organizer who was active several years ago. She asked, “In a future blog, maybe you can address what progress has been made in the US and also what the UK and Australia are doing that we could do too. I know a bit about these topics, but would like to learn more.”

It’s been on my mind since to take a stab at it. I receive emails weekly from people in the US and Australia that are working on exciting projects. Frankly, when I looked on the web for resources on this topic in 2003 it was hard to find much. Now there has been an explosion of interest in this topic and it is exciting to see real momentum and attention being given to improve the lives of these children and parents.

Here goes an attempt to update ya’ll. Please add to it in the comments! Tell me what you are doing....

Crossing my email stream these days:

In the US, the UPenn Collaborative has changed its name to Temple University Collaborative. They are doing proactive research and policy analysis to build an evidence-basis for provision of supported parenting with U.S. adult mental health systems. They are joined in this effort with researchers UMass Medical Center, Michigan State University, University of Illinois Urbana-Champaign, and University of Oklahoma – to name a few. I don’t think I am up on everything, but I receive information from my web of contacts on a weekly basis and I try to link people to parallel efforts happening in various states.

In Utah, Pennsylvania, Florida and Connecticut there have been active efforts to create supportive workshops and educational environments for children currently under 18 years who have a parent with a diagnosed mental illness.

Educational and policy related activities are happening this April via Daughters and Sons organizer Cheri Bragg (Connecticut) and a collaboration between Edie Mannion and Loran Kundra (Mental Health Association of SE PA) in Philadelphia, PA.

I will be presenting a workshop on supported parenting at the NAMI National Convention in Chicago this year. The panelists are people who have been actively doing supported parenting pilot projects and parenting assessment research in Michigan, Wisconsin, and Illinois. This workshop will be our 9th continual presence bringing these topics to NAMI National Conventions. As a former foster care child in the Wisconsin child welfare systems, this workshop is particularly close to my heart for its location and because a pilot supported parenting program for young mothers who are aging out of foster care will be discussed. All too often, the topic of poverty and its intersection with mental health is overlooked in these national mental health advocacy forums.

Australia is truly leading the way with resources and is far ahead of the US on many topics related to supporting families where a parent has a mental illness. The trendsetters on these topics are COPMI and COMIC in Australia. The UK is also far ahead with the efforts of the Princess Royal Trust for Carers, among other initiatives. (See resource links at the bottom of this post)

At first it was the Internet and email, but now social media is opening up new avenues for discussion, exchange of resources, and support. Several Facebook communities and websites exist now for adults who have a parent with mental illness. These communities have been created by people in Quebec, Canada; Rome, Italy; California and New Mexico, USA. Through these Facebook communities people with lived experience and researchers who are willing to use social media are exchanging ideas. This means that new resources reach thousands of people. (However, it seems there resources are circling in largely first world counties or among people who speak English. Perhaps more is happening, but my language limitations keep me unaware?)

A website for the Daughters and Sons Initiative is under development. We are seeking a fiscal sponsor to sustain and grow our work.

I am currently exploring ideas to put forth presentation proposals at the next international conference on these topics. Among ideas being discussed: the role of social media and the internet to organize nationally and internationally for children who have a parent with mental illness and parents with mental illness; the challenge of organizing on this topic in the United States compared to Australia, the UK etc.; the interplay between the role of researchers and community organizers (such as myself) in order to move policy forward. I just started exploring ideas for a one or two workshop proposals for this 2012 conference. (Ideas? I would love to hear from my fellow organizers.) The conference details:

Child and Youth Mental Health Matters
First National Parental Mental Health Conference
First International Young Carers Congress
Third International World Congress on Children of Parents with Mental Illness
Vancouver, B.C., Canada
May 6-8, 2012


Here are some websites for people who want more information:

(Temple University Collaborative on Community Inclusion (United States):

COPMI (Australia):

COMIC (Australia):

Check out the nicely revamped website for UMass Medical Center’s Parenting Well project (United States):

A young carers website from the Princess Royal Trust for Carers (United Kingdom):

More information from the Royal College of Psychiatrists (United Kingdom):

Mental Health America (United States) on parenting with mental illness and custody issues:

Yikkies! This is a lot to share because there are great resources being developed. All we need to do is bring these topics to the people who are trained, but simply have remained unaware of how doing small things would have great impact on the lives of the people they work with in mental health and child welfare systems

For adults who have (or had) a parent with mental illness, resources are also developing, but at a slower pace. It is up to US to develop those resources for ourselves.

The Crooked House website, which hosts this blog, has been a wonderful addition to those efforts. I know the creators hope more Daughters and Sons will share our diversity of experiences. We need to break stigma so that millions of us who have lived in the shadows of prejudice will understand our experience through access to peers.

I know that I have missed A LOT of resources here. If you know of a resource I missed, please post that resource as part of your comments! Lets keep the exchange of information going.