On Monday, April 29, 2013, Fountain House hosted its 10th Annual Symposium and Luncheon at The Pierre in New York City. This year’s theme was Mental Illness and the Family: Relationships, Resilience, and Recovery. Once again the inestimable Consuelo Mack, Executive Producer, Managing Editor and Anchor of Consuelo Mack WealthTrack, served as Master of Ceremonies. She led a learned panel through a discussion of mental illness and its relationship to familial attachments.
This year’s panel, all of whom toured Fountain House before the Symposium and Luncheon, consisted of
Dr. Robert J. Hilt, Associate Professor of Psychiatry at the University of Washington and Director of Community Relations, Department of Psychiatry at Seattle Children’s Hospital;
Dr. David Reiss, Clinical Professor in the Child Study Center at the Yale School of Medicine; and
Victoria Costello, Emmy award-winning science journalist and author of A Lethal Inheritance: A Mother Uncovers the Science Behind Three Generations of Mental Illness.
Let’s start with an incident from Costello’s book, from a chapter titled, "Alex by the Dumpster, March 12, 1998" (“Alex” is the pseudonym Costello uses for her son):
“The psychiatrist on duty at the UCLA hospital adolescent ward, Dr. C. looked up from her desk where she’d been scrutinizing Alex’s admission paperwork.
‘How would you describe your son’s recent behavior?’
“I flashed on the afternoon when I found him hiding by the dumpster behind Fairfax High School. I can’t tell her that. I quickly decided, searching for some less awful way to describe Alex’s troubles.” (p. 1)
Depending on your family of origin, this may be an all too familiar scenario. We who live with a mental illness are so used to telling our stories that we sometimes forget that our parents, siblings, or other relatives live part of their lives through our challenges. Sometimes it’s hard for them to tell outsiders, a shame and self-stigma Costello calls, “the destructive power of family secrets.” But family and family support is so important, especially for those of us living with mental illness. As Fountain House President, Kenn Dudek, commented, “Members who have families are extremely lucky. Members who don’t have family have Fountain House.”
Ms. Mack opened the Symposium by asking for a show of hands to the question, “How many have family members with mental illness?” There was a wide showing of hands. Ms. Mack then stated, “Or should I say, how many don’t have a family member with mental illness?” to which there was only a spattering of hands. She continued, “Family is where it all begins for us.”
Each panel member had his or her own specialty. Dr. Reiss explained why the family history is so important. He pointed out that while children can inherent their parents’ illnesses, adopted children will suffer from depression only if the mother suffers from it. (This brought up a quick murmuring about men/fathers and their influence, but the panel discussed parental relationships later). Dr. Reiss stated that we need to explore the role environment plays in mental illness.
Dr. Hilt discussed psychotropic medications and their use by young people for such disorders as ADHD, psychotic experiences, autism, and bipolar, among others. He explained how there has been a three-fold rise in medication use in young people. While this increase has raised concerns among the public, the greater public health issue is really a pervasive lack of treatment and a lack of early intervention.
Ms. Costello reported that her son, “Alex” is now 32, fully functioning, working, and has a social life.” She discussed self-stigma and self-medication, and how crucial early intervention is for those with mental illness. She discussed three generations of mental illness in her family which included a sister addicted to drugs, a father who was “sad” all the time, and a grandfather who may have committed suicide on railroad tracks. She went on to explain how we who are parents must treat ourselves first; get interventions for our loved ones as needed secondly; and last but not least, we must recognize that “nurture trumps nature.”
In the round table discussion, nature versus nurture was the final topic. Dr. Hilt discussed “good enough parenting” and how parents must learn to “be calm … be consistent … and to be caring.” Dr. Reiss stated that, “parents who relate well to each other don’t worry about being bad parents … while single parents need the community.” Ms. Costello pointed out “parents/families are first responders.” In summation, Dr. Hilt called for “maintaining hope” and Ms. Costello reminds us “treatment works, recovery is possible.”
After lunch we viewed a film featuring a Fountain House member who continued the theme of the day by stating, “I’m glad I have a home.” And then Mr. Dudek presented the Fountain House 2013 Humanitarian Award to author, lecturer, and philanthropist, Andrew Solomon. Mr. Solomon is a force to be reckoned with in the fields of mental health, education, and the arts. He has authored award-winning books The Irony Tower: Soviet Artists in a Time of Glasnost, The Noonday Demon: An Atlas of Depression, and Far From the Tree: Parents, Children, and the Search for Identity, which won the 2012 National Book Critics Circle Award for non-fiction. Here’s an especially thought-provoking excerpt from that book:
“There is no such thing as reproduction. When two people decide to have a baby, they engage in an act of production, and the widespread use of the word reproduction for this activity, with its implication that two people are but braiding themselves together, is at best a euphemism to comfort prospective parents before they get in over their heads. … it is often ourselves that we would like to see live forever, not someone with a personality of his own. … Children whose defining quality annihilates that fantasy of immortality are a particular insult; we must love them for themselves, and not for the best of ourselves in them, and that is a great deal harder to do. Loving our own children is an exercise for the imagination.” (p. 1)
Parents want more for their children than they had – higher degrees, better jobs, more money, and bigger houses – as if materials things are what make us strong. In their unconsciously selfish way, many parents live through their children; they are but reflections of mother and father. But what do parents do when that reflection becomes a funhouse mirror full of the kind of distortions mental illness can reflect? What do educated parents do when their son or daughter has his or her first psychotic break freshmen year of college, making it impossible to continue with studies? How does the CEO tell his friends that his son has a temporary job as an outdoor messenger, and he’s having problems getting to work because his medications make it difficult for him to wake up in the morning?
Is the mental illness a disease that will be passed on to grandchildren (Dr. Reiss believes it is likely); will there even be any grandchildren (Dr. Reiss discussed this briefly)? And what if that big house is a three-sided crate under the Brooklyn Bridge or a shared room in a supported apartment? How do parents explain to their friends that they attended this year’s Symposium to get some new insights into how to manage their relationship with their son or daughter, or do they just pass it off as attendance at a charity they support?
Some of these questions are answerable. Others don’t have tailored responses. But I agree with the panelists and Solomon when they stated that there is nothing like familial support, whether that support comes from family-of-origin, extended family, blended family, or created family.
I wrote a poem that ends with these words:
Families: as in who begat whom, and who begat whom, and who begat whom begat the rebuilding of deconstructed lives marred by unhealthy psychological and physiological phenomenon that steal away our hearts, our minds, our souls. But we are still family.
Davida Adedjouma, LMSW Education Unit and Board of Directors, Fountain House
Nevertheless the motivation for this wave of generosity is driven by the stigma associated with mental illness. The financial benefit the mental health community may receive is more than offset by its cost, i.e., reinforcing the connection between violence and mental illness in the public perception. Discussing mental health funding in the context of gun violence legislation erroneously transforms a public health issue into a public safety issue. Once again, people with serious mental illness get the blame.
Summer Berman, Fountain House Executive Fellow, took up the dilemma of addressing mental health reform within the context of gun violence in a recent blog post. She wrote:
“[W]hen we use the risk of violence as a rationale for better and more available services for people with mental illness, we put at risk all the good works we have done over the years to reduce the stigma surrounding mental illness. When we conflate mental illness and violence we do ourselves and our community a disservice."
The Bazelon Center for Mental Health Law, the leading national legal-advocacy organization representing people with mental disabilities, asserts that people with psychiatric disabilities are “a misplaced priority for gun legislation.” Earlier this week, Bazelon announced the release of a paper titled Wrong Focus: Mental Health in the Gun Safety Debate. I’m grateful to them for allowing me to share a portion of the announcement, a thoughtful statement from Jennifer Mathis, their Director of Programs.
"Studies have shown that mental illness by itself is not statistically related to violence, and that people with serious mental illnesses are far more likely to be the victims of violent crimes than the perpetrators. And yet, despite the facts, many lawmakers and journalists continue to stigmatize people with psychiatric disabilities as the primary concern related to gun violence.
Though fixing our broken mental health system is an imperative, we should do so separately from the gun debate, as mental health reforms are likely to have little impact on gun violence.
We know that services such as supportive housing, mobile services, supported employment, and peer support services are extremely effective in enabling people with psychiatric disabilities to succeed. These technologies are also less costly than emergency rooms, psychiatric hospitals, jails, and shelters. But they are unavailable to thousands of Americans who need them.
We should afford Americans with psychiatric disabilities the services they need because it will improve people's lives and save money. Not because it is a distraction from the primary causes of gun violence."
People living with mental illness are not just a problem to be dealt with, as indicated by the tenor of the current national conversation. They can live full, productive, and satisfying lives as contributing members of our society. Many do. Centers in the community that support recovery and opportunity are crucial, and we enthusiastically support funding initiatives to establish and improve them. However, we are not grateful if it comes at the expense of the reputation of the people they are meant to serve.
Jerry Dincin (1930 - 2013) worked at Fountain House from1958 to 1964. He was the first person charged with replicating the Fountain House model, developing two programs in New Jersey before moving to Chicago to become the Executive Director of Thresholds. The Fountain House communitiy offers sincere condolences to Mr. Dincin's family and friends.
The year I came to Fountain House, 1964, turned out to be Jerry's last year before taking the position of Executive Director of Thresholds, a new Clubhouse/Psychosocial Rehabilitation/Psychiatric Rehabilitation program in Chicago. During that year I didn't get to spend much time with Jerry, because he was out developing Friendship House and Prospect House, two new programs in New Jersey. (It seems that in this period the replication of the Fountain House model would be carried out, in a hands-on manner, by trained Fountain House staff.) Jerry was highly regarded by all and could or should have been the assistant director of Fountain House.
After Jerry moved to Chicago and sometime after I was appointed Program Director at Fountain House, then-Executive Director John Beard asked me to join him on a two-day trip to attend a conference in Chicago. The first evening after we arrived, we met Jerry for dinner. John and Jerry talked about many things, but I clearly remember their conversation about starting a professional organization made up of Psychosocial Rehabilitation programs. Jerry was very excited about the prospect of such an organization.
On the plane ride home, John appointed me as the Fountain House representative to help develop any formal professional organization. I should explain that from approximately 1972 to 1980 a group of programs identifying themselves as psychosocial rehabilitation programs were meeting annually to share theory, research and program innovations. The participants at these early meetings were made up of a small group of programs: Fountain House in New York, Thresholds in Chicago, Horizon House in Philadelphia, Hill House in Cleveland, Friendship House and Prospect House in New Jersey, Forward House in Montreal, and a few others made up the core programs that met in the early days.
As time went by the number of programs sending staff to these annual meetings grew until, at the urging of Jerry and Irv Rutman, the Executive Director of Horizon House, a working group was formed to plan the creation of a formal professional organization: the International Association of Psychosocial Rehabilitation Services (IAPSRS).
Once it became clear that an organization would be formed, John provided support by allowing for my involvement and participation. As a representative of Fountain House and later as the Director of The Club (in New Jersey), I socialized and worked with Jerry and the other founding IAPSRS members to create and grow the organization. Jerry and I also co-chaired some of the more exciting symposia in which we debated the importance of program cohesion and program diversity. Also, to my chagrin, we competed for a National Institute of Mental Health (NIMH) training grant that he won for Thresholds. In all my dealings with him, I came to know him as a creative and passionate soldier and advocate for people with mental illness with a fierceness and dedication that is hard to duplicate.
Julius Lanoil Consultant and former Program Director, Fountain House
Last month, Fountain House members and staff brought their children for a weekend at High Point Farm. It was great fun! There were 19 people in total (we barely fit in the chalet!), eight of them children ranging from 6 months to 12 years.
Ecstatic screaming and laughter dominated as the background noise in the chalet while seven of the kids played games of "Zombie" and "Stuck in the Mud" for hours on end. Oblivious to the need for food or sleep, the kids were in heaven as they barreled through each room, banged on the piano, and basically created chaos. Parents attempted to have conversation, play Scrabble or watch a movie, with some success. The only compelling distraction for these blissful children was the announcement that it was time to feed the animals. Then it was time for the cats and chickens to scatter in all directions to avoid the games of tag and reenactment of WWE matches that took place throughout the farm.
Somehow we were all fed, slept well, and left a clean house, despite the kids ruling the house. In the end, all parents were satisfied as the kids said their tearful goodbyes and promised to come back for a spring reunion. Plans were made to schedule more Parents and Kids weekends in the coming year.
Nancy Young Employment Unit Leader, Fountain House
I’ve just completed comprehensive clubhouse model training at Fountain House. This training was once again another true example of Fountain House’s innovation and commitment to developing strong clubhouses across the globe.
In this magical training we covered the basic principles of a working community, including the Fountain House history, member choice, the need to be needed, and creating a collaborative work environment.
The core group included six directors from Italy, Sweden, the United States, and of course, Australia. With the core group being made up of directors, it helped us define our ultimate role in the clubhouse community and explore together the true meaning of what started on West 47th Street New York more than sixty years ago.
If I were to summarize what makes me so excited about my last two weeks here at Fountain House, it would be not about a model that is 65 years old, but more a way of helping people with mental illness that has recovery, innovation, and strategic direction at the heart of all that it does. For directors like me, these three principles that are practiced every day at Fountain House are paramount to its success. We as directors need to accurately illustrate them in own communities across the world.
I attended with one of our members, Nick, who helped me to keep fresh in my mind the true member needs of the Toowoomba Clubhouse and to reflect on our daily discussions and what they really mean for our community in Toowoomba.
Luke Terry Executive Director, Toowoomba Clubhouse