COMMUNITY CURRENTS

Carmen Lee, Director of “Stamp Out Stigma” 

By Carmen Lee, PWDF Program Coordinator for Public Awareness and Education

While enrolled in City College of San Francisco’s Community Mental Health Worker Program several years ago, I first learned from classmates about the “other” Carmen Lee—the distinguished founder and director of Stamp Out Stigma (SOS) based in San Mateo, California.   Founded in October 1990, SOS is a peer-run community advocacy and educational outreach program dedicated to eradicating the stigma associated with mental illness.  SOS’s interactive panels have presented to groups including suicide prevention centers, schools, law enforcement Crisis Intervention Team (CIT), and mental health professionals.

Soon after I joined People With Disabilities Foundation (PWDF), I reached out to my namesake at SOS about meeting in-person.  This meeting took place at Modern Times Bookstore on a Sunday afternoon screening and discussion of “Where Is Hope,” a documentary about police brutality against people with mental disabilities. 

Carmen (seated at left, in photo above) at “Where Is Hope” discussion with documentary participants Tiny (aka Lisa Gray-Garcia), Leroy Moore and LaMesha Irizzary.  People with mental disabilities are often victimized because of stigma and discrimination, and those in mental distress are at high risk for confrontations with police.  Carmen’s SOS collaborates with San Francisco’s Mental Health Board to train police officers about more humane ways to deal with mentally ill people in the community, and to bring those needing care into hospitals.

1.    When you began Stamp Out Stigma 25 years ago, what were common myths/stereotypes about people with mental illness?  What changes have you noticed about the public perception of people with mental illness?  

Many years ago, in 1990, most people thought that people with a mental health diagnosis were violent, unkempt, dirty and needed to be locked up and put away from the “normal” public.

Hopefully, the general population now see that, with certain celebs coming out with having these disorders, they can be treated effectively. However, the news media constantly keeps that old image alive by stating all the tragedies have a basis in having a mental illness. Not until the media can be changed, will all the good things that we do be fully recognized.

2.    Stamp Out Stigma website states: “Our panelists represent a wide variety of experiences with mental illness, different diagnosis, genders and age groups.”  Do panelists also represent a range of racial/ethnic groups?

SOS has people of all ethnic, cultural and diverse panelists, with varying ages and genders. Unfortunately, however, many of various cultural and ethnic backgrounds have lots of resistance in admitting to having a mental illness. But this is changing very slowly, but it is changing by reaching those groups and trying to inform them that having a mental illness is not and should not be considered wrong or embarrassing and not a negative within their cultural beliefs.

3.    How many SOS presentations have you been involved in? Which group presentations stand out the most, and why? 

Out of participating in over 2,600 SOS presentations to date, I find them all to be very rewarding.  I personally like the suicide prevention center volunteers on the hotlines and try to assist them in recognizing what helps in a crisis situation. I have suffered from suicide ideations for most of my life, so this is of special importance to me.

4.    Are there any particular audiences that you would like to seek out, and why?

Yes, the churches, synagogues, temples, mosques and all congregations need to have these trainings. Statistically, many people suffering, or their family members, contact the head of their congregation to seek help.¹  But we have found that they are the least prepared to give out names of local resources and really don’t know what to do. They have been the hardest group to accept or even want our SOS presentations.

5.  How many countries have adopted SOS?  What cultural/linguistic adaptations have been made for different countries?  Are there any particular countries that you are reaching out to, and why?

Several countries have adopted our program, although they probably call it another name or have the program under their own umbrella. For example, Patient View in London runs their own program after following the Train the Trainer guide on our web site after getting approval to use our name.  They were the first, and I now believe that several other countries in Europe also have similar programs.

We also went to Australia and, to my knowledge, they also have created many anti-stigma programs around their country. I don’t keep in touch with them now, as I’m really too busy doing our “own thing” here. I also went to Hong Kong and hope their program is still going. This was before Hong Kong went back to China, so I really don’t know. I do know there was a lot of interest when Hong Kong was under British rule, and they were able to get a group going almost immediately.

The University of Minnesota contacted SOS and also tapped into our Train the Trainer guide and began SOS on their campus for college students. This became so successful that other schools around the nation began a similar program. The name has evolved and it’s now called Active Minds, and I believe it’s in most of the major universities.

6.    What do you think is the greatest impact SOS has made in its 25 years?  What are your plans for the next 25 years?

Perhaps, the greatest impact is that SOS began a movement that has been replicated throughout the world and maybe it will make a difference in creating new innovative programs, developing more effective advocacy, and people will see mentally challenged people as courageous rather than pathetic.

The next 25 years, I plan to finish my book, keep working until I drop and find a successor for the SOS program.  Finis!

Carmen and her dog, Ceely.

Interesting facts about Carmen and SOS:

Stamp Out Stigma was originally formed as Stomp Out Stigma, but “stomp” sounded violent so it was replaced with “stamp.”

80-year-old Carmen is writing her autobiography, Nude in Times Square, which goes beyond her SOS biography.  She shared with me a chapter that describes a series of harrowing events after an early suicide attempt when she confides in her Reverend only to have him betray her by calling the cops to drag her to a hospital, where she is strapped to a gurney for 19 hours, awaiting a judge to legally commit her to Austin State Hospital.  Throughout this ordeal, Carmen is separated from her 11-year-old daughter. 

Carmen served on the Suicide Attempt Survivors Task Force of the National Action Alliance for Suicide Prevention, which published the seminal report, The Way Forward: Pathways to hope, recovery, and wellness with insights from lived experience (2014).  In February 2015, Carmen received a Lifetime Achievement Award at the 7th International Conference, Together Against Stigma: Each Mind Matters. Carmen and her work with SOS are profiled in Mark of Shame: Stigma of Mental Illness and an Agenda for Change (2006), and Coming Out Proud to Erase the Stigma of Mental Illness and Solidarity: Stories and Essays of Solidarity (2015).  Carmen writes for Wellness Matters, an e-journal of San Mateo County Behavioral Health and Recovery Services.  “Let’s Talk Suicide” is the topic of her September 2015 article.  Her next article will be “Shall We Reopen the Asylum.”

PWDF Profile

Who We Are

People With Disabilities Foundation is an operating 501(c)(3) nonprofit organization based in San Francisco, California, which focuses on the rights of the mentally and developmentally disabled.

Services

Advocacy: PWDF advocates for Social Security claimant’s disability benefits in eight Bay Area counties. We also provide services in disability rights, on issues regarding returning to work, and in ADA consultations, including areas of employment, health care, and education, among others. There is representation before all levels of federal court and Administrative Law Judges. No one is declined due to their inability to pay, and we offer a sliding scale for attorney’s fees.

Education/Public Awareness: To help eliminate the stigma against people with mental disabilities in society, PWDF’s educational program organizes workshops and public seminars, provides guest speakers with backgrounds in mental health, and produces educational materials such as videos.

Continuing Education Provider: State Bar of California MCLE, California Board of Behavioral Sciences Continuing Education, and Commission of Rehabilitation Counselor Certification.