My name is Renu Garg-Peterlinz and I am a consumer turned advocate. I am currently Co-Chair of the Mental Health Committee at Mission Peak Unitarian Universalist Congregation (MPUUC), Assistant Director of The Life Reaching Across to Life Organization, Chair of the Asian-American Committee at The Pool of Consumer Champions, and a "Mental Health First Aid" Trainer. Not to forget a mother of two young children.
Reverend Barbara Meyers has opened many doors for those with mental health challenges, and I would like to open them further. Although this may be direct and candid, it is meant to share a sometimes, unheard view.
This sermon began from my desire to share the message of the 1970's Judy Chamberlin's book "On Our Own". This book opened my eyes to a new perspective on mental health stigma and ignited my soul with hope and potential for personal empowerment. [Those with mental health "challenges" are referred to as "Consumers" of mental health services and resources.]
I am here to request Mission Peak to help empower consumers, to a status of equality. The first two UUA Principles are (1) The inherent worth and dignity of every person, and (2) Justice, equity and compassion in human relations. These are not applied to consumers at all times. Purposefully applying these principles to all can contribute to an even more welcoming place at Mission Peak.
Chamberlin offers a path of liberating the consumer from the internalized stigma tormenting our inner self. She raised consciousness of the hurtful and often detrimental treatment of those with mental health challenges. She is also credited as one of individuals who assisted in beginning the current consumer movement.
What is the consumer movement?
"There is a growing movement throughout the United States (and the world) of people calling themselves consumers, survivors, or ex-patients--who have been diagnosed with mental disorders and are working together to make change in the mental health system and in society. The consumer movement grew out of the idea that individuals who have experienced similar problems, life situations, or crises can effectively provide support to one another" [1]
This is in stark contrast to the Medical Model which relies heavily on treatment delivered almost solely by "health care professionals", medication, ECT, and other medical innovations.
The consumer movement is a proponent of the Recovery Model which, a few months ago, I spoke of as "... a journey of healing and transformation, enabling a person with a mental health problem (challenge) to live a meaningful life in a community of his or her choice while striving to achieve his or her full potential." [2] There are 10 fundamental components of Recovery: Hope, Self-direction, Individualized and Person Centered, Empowerment, Holistic, Non-Linear, Strength-Based, Peer Support, Respect, and Responsibility. [3]
My own personal liberation began with the right medicine. But with out the non-judgmental support, self-analysis, personal responsibility, and empowerment , I would not be able to stand up here today. Through the support of the Reaching Across Organization, Eckart Tolle's "A New Earth", Judi Chamberlin's "On Our Own", and a group in Oakland called The Pool of Consumer Champions, I have found joy,-- and a desire to truly live my life fully and with meaning. The unconditional support I received from many, particularly from James "Scotty" Scott, my dear friend Pat, and some other close friends, has made it possible for me to dream of a future and to appreciate the NOW. I believe in the use of both the Medical and the Recovery Model in the healing of consumers.
However, I find there is still a critical need to inform and educate others, including, even, my own parents, about stigma.
Just last week, I spoke with my mother after a long time of no communication. I shared my passion and commitment for decreasing stigma. Her response was "Is there still stigma?"
This comment was startling. But to be fair to her, I am going to try and help discuss what exactly is stigma, whether it is really still occurring, and what, as a community, we can do to decrease it.
Judi discussed terms which are difficult to really understand from the eyes of a non-consumer. "Mental health and mental illness are terms that have entered the popular vocabulary. Yet, they are terms that few people can define. Lay people and psychiatrists alike tend to call people healthy when they like their behavior and mentally ill when they dislike their behavior. ...Once it has been decided that a person has a sick mind, enormous social consequences ensue...A finding of mental illness, ... frequently results in the loss of liberty. [4] She continues later in the book, "Mental patients are stigmatized not by language, but by the fact that it is legally acceptable to treat them differently. The 'stigma' of mental illness does not flow from the use of words, and cannot be changed merely by changing language. ...-the fact (is) that "mental patients" really are second class citizens who don't enjoy the basic rights of others." [5]
Although this was written in the 70's, with a second edition in the 90's, the feeling of being a "second class citizen" is one many consumers, like myself, still experience today.
So why is there still stigma and a "second class citizenship" for consumers? Let me offer my views.
In general, society reacts and views consumers negatively, Chamberlin states:
"People have so many stereotypes of mental illness that they find it almost impossible to react normally to the ex-patient". [6]
For example, a good friend of mine lives in a community where many organized social activities are available. Even though his weekends can sometimes feel long and lonely, the fear of rejection keeps him from participating. He is fearful someone may find out he has mental health challenges and ask him to move out of the community.
Many other consumers I have spoken with, also, have limited their social interaction to "consumers only"--due to stigma. In the 90's, after I was finally stabilized by medication, my feelings of being unworthy because of my "mental health challenges", kept me secluded from society for over 3 years, due to lack of empowerment.
My husband Kevin, at his previous workplace in 2001, recounted a story of how an co-worker, who complained to managers of "over-hearing co-workers criticizing him openly", was thus labeled as both a mental health challenge and possible danger. This individual was told to seek help and then was quietly fired.
My psychiatrist is well hidden in the Hills, with his office discretely marked. This permits his highly successful clients to visit him without revealing their "secret" of mental health challenges.
The current mental health system, in many seeming subtle ways, may actually proliferate the stigma associated with both how a consumer is treated by others and how a consumer thinks of and treats themselves.
A 2006 article in the Clinical Psychology: Science and Practice, recently stated: "Existing studies of mutual support groups suggest that they may improve symptoms, promote larger social networks, and enhance quality of life".
Other studies also show that an increased social network and community --of course--can make a huge difference.
The American Journal of Community Psychology in 2008 published results from an experiment comparing the effectiveness of an unlocked, mental health consumer-managed, crisis residential program (CRP) to a locked, inpatient psychiatric facility (LIPF) "....Participants in the (crisis residential program) experienced significantly greater improvement ... 'consumer residential-style facilities are a viable alternative to psychiatric hospitalization ..." (and less expensive!!)
Why is this, Chamberlin frankly writes:
"Psychiatrists have no monopoly on knowledge about loneliness, alienation, anger or other difficulties with living. In fact, psychiatrists (who are often middle or upper class) may never have faced the kinds of problems their poorer patients face daily." [7]
This quote rings very true for me. After my medication had been stabilized, I found great support through the Recovery Model and "non-professionals", thus allowing me to decrease medication.
The following stories further illustrate the tendency of medical and legal professionals to openly stigmatize consumers by applying different, lower standards for basic human rights and dignity when dealing with consumers.
Recently, my friend had a second visit with a psychiatrist. As the psychiatrist reviewed her chart carefully, he stated, "Anyone who wants to help you is doomed to fail". This left my friend even more symptomatic than before she came to the psychiatrist. This psychiatrist may have had issues himself!!
I want to share some additional examples which illustrate how the consumer can be left with a totally, negative self-perception, creating this internalized stigma.
During college, I had my first experience in a psychiatric ward. I attempted to communicate exactly how I felt and what I needed at the time, I was expressing my inability to handle anxiety (which made me want to crawl up the walls). The staff did not help me alleviate these symptoms, but rather punished me by placing me in a "quiet room". A "quiet room" is a secluded room with limited, to no contact with others. Often, it is an empty room stripped of all objects and even furniture presuming they may be used to harm oneself. It is also used to punish unwanted behavior, as decreed by "mental health professionals".
I was fortunate that my "quiet room", had a chair and TV. Others have shared with me that they have been stripped naked prior to entering the "quiet room"!! Believe it or not, there was, and may still be, a fear by some mental health professionals that one can hang themselves by their underwear!!
In contrast, the day Riley was born, I was absolutely "amazed" at how wonderful the maternity staff treated me. I was smiling and felt so honored and respected... But why?
Prior to Riley's birth, I had never been in the hospital for anything but mental health challenges. In the maternity ward, I felt the dignity and respect I did not receive in my many stays at a psychiatric ward. I thought this was my fault. If I am not mentally ill, I too can be treated properly, I just need to "behave". I actually thought the improper manner I was treated in psychiatric wards was my fault -- and worse, I was convinced I deserved it!! Yet, I shelved this insight until now.
In another example from just the past year, a consumer was skipping in a San Francisco Psychiatric ward. After refusing to stop , the staff began to place her in a "quiet room". The staff in the ward deemed that "skipping" was not "normal"!!!
This story continues, with this same friend who tried to stop the "skipping woman" from being isolated in the "quiet room".
My friend opened and held the "quiet room" door with all all of her strength, trying to help the women who had "skipped" from being locked up. The ward staff called in a Security Guard, he proceeded to grab my friend's injured wrist and said "remember we are not touching your wrists!" The security guard was well aware that consumers frequently are not heard, and they made it clear to her she too, would not be heard.
Many have been dealt with very harshly, with no attention to the care and sensitivity required. Giving ultimatums and punishing only aggravates the already debilitating mental health symptoms. Although security and safety are of concern, only 1% of those with mental health challenges are reported to be dangerous, Most consumers, need understanding, acceptance and compassion, not restrictions, accusations, and ultimatums. A warm smile, a listening ear, validation. Although it may take more time and effort, it will lead to greater recovery and save lives.
IF consumers are NOT a part of treatment and their needs continue to be ignored, stories like the following will continue.
At John George Hospital, a public psychiatric hospital, in the Bay Area, individuals wait in the Psychiatric Emergency Services room for days. They sleep in chairs or the floor until a room is available -- yes for days!!--- and they are in need of care.
Even at Fremont Hospital there are practices needing to be questioned. On the teen floor, teens entering the hospital are taken to a back room and asked to strip naked to determine if there is physical abuse. I understand this-- however, no parent or friend is allowed to comfort them. Having to strip naked, as a teen, in front of strangers must be quite traumatic. An experience like this remains with an individual for a long time.
Law enforcement is in serious need of training about mental health challenges. Some may have heard about the tragic death of Richard DeSantis, three years ago in Sonoma County. Richard , the son of a colleague of mine, was experiencing a mental health episode, which could be defined as psychosis. His wife phoned the police for help. She clearly stated he was challenged by mental health issues, that Richard was unarmed, that the weapon he owned was in the house, and that she needed assistance. Outside of the house, Richard was ordered to follow strict commands and then a series of ultimatums. He was so confused and disoriented, he began to run, and he then was shot by the Police. The police escalated the situation and then used unnecessary lethal force to kill Richard. There were six police and some with rifles. The police had many other options available with them that they could have used but did not.
Richard's wife needed help. Yet, the only option available to her immediately were the police, who were both unequipped and inappropriate. But there are other options being developed. Imagine if police were successfully trained in mental health crisis or a trained and helpful peer was available for Richard and his wife, this could have saved Richard's life.
The methods currently practiced in mental health crisis need to be reserved as a last resort, after the many other options available.
Now I would like to speak of the responsibility of the consumer in their care. But this is difficult, without acknowledging, as Chamberlin says:
"The belief in one's own inferiority makes taking action impossible; the discovery that the inferiority doesn't really exist is liberating". [8]
How can we, as a society, help the consumer build or rebuild the basic self-esteem needed for them to guide their own recovery?
A mental health advocate on the internet provides words of wisdom:
"Don't worry that the person will be embarrassed after having a major episode and/or spending time in a mental health care facility. Call, send cards, extend invitations for lunch or to go to the movies. Visit. The best gift you can give is to show continued respectful interest without regard to any awkwardness you might feel. Awkwardness dissipates easily after making a few attempts. However, don't push it against the person's wishes. Don't go away entirely, but remember that people are all different and some want more time to themselves than others. This is true regardless of the state of their mental health." [9]
Eckart Tolle, in "A New Earth", talks about knowing who we are by our actions, and reactions, not necessarily by what we say or believe about ourselves.
I encourage you to step out of your comfort zone, and assist the consumer movement by reaching out and making a new friend.
In a 1999 speech, Bill Clinton ended with:
"Mental Illness is nothing to be ashamed of, but stigma and bias shame us all."
"Voices of Transformation: Developing Recovery-Based Statewide Consumer/Survivor Organizations"; National Empowerment Center and The Recovery Consortium
Bennett, Bob. MENTAL ILLNESS: A Guide to Recovery, Trafford Publishing, 2004, 2006
Chamberlin, Judi, On Our Own. National Empowerment Center, Inc., 1977
Chamberlin, Judi, On Our Own. National Empowerment Center, Inc., 1977
Chamberlin, Judi, On Our Own. National Empowerment Center, Inc., 1977
Chamberlin, Judi, On Our Own. National Empowerment Center, Inc., 1977
Chamberlin, Judi, On Our Own. National Empowerment Center, Inc., 1977
