What is City Voices?
New York City Voices: A Peer Journal for Mental Health Advocacy is statewide in circulation and reporting. It was founded in 1995 by Ken Steele, a paranoid schizophrenic who lived inside the delusions and hallucinations of his disease for 32 years. It has become a journal where mental health consumers, ex-patients/survivors, family members, and professional helpers can let their voices be heard, providing mutual support for living the most empowered and independent lives possible. This journal is inclusive of all ideas and opinions which advance the quality of life for people with mental illness and their families.
- Founder: Ken Steele
- Editor-in-Chief: Marvin Spieler
- Original Website Creator: Richard Lenat
- Current Web Designer/Webmaster: Diana Jackson
- Layout Editor: Lawrence Kim
- Photographer: Marty Cohen
- Poetry Editor: Kurt Sass
- “Alternative Healing” Column: Sue Batkin, CSW
- “Ask the Doctor” Column: Steve Goldfinger, MD
- “Ask the Housing Experts” Column: Daniel Stern & Elizabeth Peterson
- “Ask the Pharmacist” Column: Steve Kaufman, RPH
- “Ask the Therapist” Column: Rita Seiden, CSW, PhD
- “Bruni in the City” Column: Christina Bruni
- “Editor at Large” Column: Marvin Spieler
- “Justice for All” Column: Daniel Phillips
- “Gay/Straight Human” Column: Christian Huygen
- “Roving Photographer” Column: Marty Cohen
- “Peers on Relationships” Column: Michelle Bruenn & Jenny Chan
- “Veterans’ Issues” Column: Kenyatta Yamel
- “Ward Stories”: Kurt Sass
Editorial Board Members
Mariann Coleman, Tom Furey, Steve Goldfinger, Steve Homan, Kurt Sass, Marvin Spieler and Will Jiang.
New York City Voices is statewide in circulation and news reporting.
New York City Voices is made possible through our subscribers, donors, advertisers, foundation and corporate grants.
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Which diagnosis is the least debilitating?
By Vanessa Ferney
There was a time when people were reluctant to disclose that they were depressed. It was considered a weakness by society at large. Seeing a therapist meant a person was unstable and a misfit. Today, that is still true in many parts of America. In New York City, however, depression and therapy reflect metropolitan lifestyle, as if life in the Big Apple mirrors a Woody Allen movie.
In the arts, it is normal to be depressed and in therapy. Prozac is consumed like candy in the eyes of the public, and it is almost unfashionable not to be depressed from time to time.
Being manic-depressive is now becoming acceptable in various communities as well. Robin Williams fans can attest to the fact that he is at his best and funniest when he reduces his Lithium. Mania has a reputation for being exciting and fun very often, with the negative aspects of bipolar occurring when depressed. Mania is considered equivalent to acting like a caffeine addict who drinks 15 cups of coffee per day. Anyone with serious manic depression, however, knows that mania can be quite horrific, involving paranoia, delusions, or even hallucinations, which are symptoms rarely discussed by the public. Yet, if someone says they are bipolar, it is still somewhat acceptable.
Next on the food chain of mental illness comes schizoaffective disorder, which cannot be fully understood without being familiar with full-blown schizophrenia. Schizoaffective disorder combines the symptoms of schizophrenia with those of a mood disorder. If you are schizoaffective, you are either unipolar or bipolar type, which means that you either suffer from symptoms of depression, or manic depression while also experiencing the more flavorful and prevalent schizophrenic symptoms. Schizoaffectives are considered to have a “better” prognosis than schizophrenia, but a “worse” prognosis than either mood disorder alone. This, however, is not always the case.
There are many people with depression or bipolar disorder that may at some point be less functional than someone with schizoaffective disorder, than with schizophrenia. Every individual must be considered unique with symptoms that affect their level of functioning differently. According to the public, however, being schizophrenic is ALWAYS considered worse than being bipolar, which is ALWAYS considered worse than being depressed. As far as schizoaffective disorder is concerned, most people have never even heard of it. It might as well be some new kind of dance craze or type of breakfast cereal. On my computer, the word schizoaffective is underlined in red because the computer does not recognize it as a real word. Those few who are remotely knowledgeable about schizoaffective disorder, tend to consider it nearly as “bad” as schizophrenia. It can even be argued that it is in fact a kind of schizophrenia, though it still has a different make-up of symptoms and is listed as a separate category in the DSM (Diagnostic and Statistical Manual).
Some schizoaffectives are actually “worse” off than schizophrenics, because they have symptoms from not one, but two diseases. Again, every individual is different.
Ironically, the same impression of various mental illnesses exists among people who are mentally ill, as within the public at large. The mentally ill tend to stigmatize themselves as much as others stigmatize them, otherwise known as self stigma. Many mentally ill people are afraid to disclose not just to society, but to EACH OTHER, and sometimes with good reason.
Manic depressives are considered “crazier” than depressed people, especially BY depressed people. That goes double, triple, quadruple for schizoaffectives and schizophrenics.
For example, suppose you were in a support group of people with mood disorders. It is perfectly acceptable to discuss your depression, how hard it is to get out of bed, your medication regimen, your therapy, and so on. A bipolar person discusses these things as well, but adds information on mania which includes delusions of grandeur, singing to people in the street, and buying a large plot of land in the South Pacific. The added manic symptoms are foreign to the depressed person and often considered “crazier.”
A schizoaffective in such a group may have depression or mania as well, but then adds something about how their phone is being bugged or how difficult it is for them to learn how to fax a letter. All the more “bizarre” to the depressed person, and even to the bipolar, not because it is truly “crazy,” per se, but because it is something someone who suffers from depression or mania alone has not experienced.
You, the reader, are probably thinking that the schizoaffective is certainly less functional than the depressive because he or she is paranoid or is having cognitive problems. Schizophrenics supposedly drop in IQ once they exhibit symptoms, and everyone thinks of this when considering the state of a schizophrenic or schizoaffective as well. But what about the depressive who stares at the cracks in the ceiling and cannot get out of bed, compared to the high functioning schizoaffective who writes great works of fiction. Or the schizophrenic who is effectively medicated, has a relatively high IQ, and thus very articulate, though still somewhat afraid of the police? Who is “lower” or “higher” on the food chain in this case?
The truth is that you cannot judge a person by his or her diagnosis, and we mental health consumers should know better than that. If we judge each other, then you cannot blame the public for judging us as a group. We mental health consumers need to make a positive impression upon everyone we encounter, mentally ill or not, and prove our abilities. This would be much easier if we would begin by giving each other a chance.
On your own with mental illness is an enormous challenge
Elyssa D. Durant, Ed.M.
What must my neighbors think? I am up all night and I sleep all day. I can only write with one pen and I often leave my keys in the door. I am noisy and loud and to make matters worse, I’m from New York. I listen to one song on the radio over and over again.
I take everything I own with me when I leave, and carry it back in when I get home. I am constantly tripping my own feet, and probably offend them with my politics. I am not afraid to say that President Bush looks like the Outbreak Monkey.
So my neighbors may not like me, but they don’t know me. And they don’t care. After being assaulted in my own home several years ago, I noticed my neighbor witnessing the event through his bedroom window. When questioned by the police regarding his failure to act, he simply told them, “Well, as far as I’m concerned, good fences make good neighbors.” Well, fuck him!
Do you know how scary it is to be alone in a strange city? Afraid to leave and afraid to go home? To live in your car because it was the better option? To come home one day and find everything and I mean everything you own was gone? Your birth certificate, your social security card, your grandmother’s jewelry. Where would you start? Would you know what to do? Would you ever go back? Would you ever feel safe again in your own home? Anywhere? Whom would you trust? Whom could you trust? You could trust me. Because this is who I am.
They don’t know that I spend my free time volunteering at the homeless shelter or by myself. They don’t know that I spent most of my twenties in constant fear and physical pain. They don’t know how it feels to live with Obsessive Compulsive Disorder. I became a prisoner of my own making. I live in fear. Fear of fire, fear of chemicals, fear of the dark. Fear of spending the rest of my life with this damn disease.
I need a map to find my keys, and once I do, I have lost my phone. I like my car. I can see everything coming towards me, and I can always get away. I like to write in my car. With one pen, and one song playing over and over again on the radio. So as I accept the reality that I may never own property or have a place to call home, I can say with certainty that of all the things I’ve lost, I miss my mind the most!
You may not care how much I know, but you don’t know how much I care.
I can be the person I want to be
Elyssa D. Durant, Ed.M.
It’s nice to hear from you, I had just been thinking of you. Is there a reason why you sent me two copies? Talk to you soon—Elyssa Durant’s Former Therapist
Now how can you call yourself a qualified therapist and ask me such a stupid question? I have at least two of everything!
So my alter-ego as a “cyberwhore” is no longer a secret! I always send duplicate copies of every outgoing e-mail to myself to a number of free-mail accounts. Most have probably expired and I can’t even remember most of the passwords to access them, which leads me to wonder what happens to my written works that I have so carefully created? Do they just float around in cyberspace forever? Are my words now immortal? Does that make me grandiose or paranoid?
I had my first appointment with my new psychiatrist on Wednesday and he seems very “eager” to help. He is a very young resident, and I think he is kind of psyched that he got placed at Vanderbilt in Nashville rather than some community mental health center in rural Tennessee. For his training, he needs a number of hours conducting therapy—so I graciously agreed to be one of his guinea pigs. I negotiated a one-hour session every other week.
I hate therapy. It seems so staged and rehearsed. I actually spend hours before a session trying to think of what I should say.
That never seemed to work with you. That kind of annoyed me, because I wanted you to play the game with me. This is the way it is supposed to work: I’ll tell you what happened as a child, and you tell me the source of my insanity.
I would try to remember the random things that happen each day and let you know that I was telling you the truth about my life, my world, and my family. On many occasions, I would forget my zinger, my “punch-line” if you will, and I would be so disappointed in myself. I would drop these little tidbits of information hoping you would recognize that I was not completely beyond help, and you might understand the method to my madness. Would that make it okay to be so fucked up? Loony. Crazy. Nuts.
You never once said, “Aha!” Instead, you would listen impatiently as I reflected on childhood traumas. Even the most elaborate reports of my childhood experience did not make you flinch—well, maybe a few times! At what point did you realize that there was some truth in what I was telling you? I would say the same thing over and over because I knew it to be true, to be fact, to be far more cruel and evil than anything I could I make believe as a child. I want to stop playing those games. I am ready to be a person. I am ready to love. I am ready to be “normal.”
As I grow, I would like to become more direct, more assertive, and more sure of what I am saying and how it is being received. In the past, I would sit with silence and ambivalence and just fall into situations by default. I don’t want complacency to guide me through life. I am not incapable of protecting myself anymore. I hated being such a passive participant in my own life not knowing where I would be living, with whom, and for how long. Learned helplessness. I wonder how things might have been different…if only.
I will never know how events shaped my life and broke my mind. What caused my mind to break? Was I too weak? Was there some point where I should have thrown in the towel and taken my own life? Was there anything, anything I could have done differently to survive? Is there a “normal” breaking point? Did I put up a good fight? Did I do okay?
I want to act with purpose, speak with conviction, and be confident in my decisions. I want to choose action rather than inaction and feel comfortable with the choices I have made. No more ruminating over what I should have, might have, or almost done.
How did you manage to put my mind back together again without knowing what went wrong? Is my head okay? Can I have children?
You were a good therapist, you are a great therapist– the best!
By: Carl Blumenthal
Based in Massachusetts, Patricia Deegan is a psychiatric survivor and activist, psychologist and consultant to government and community-based mental health agencies. In 1987-8, she wrote the seminal paper, “Recovery: The Lived Experience of Rehabilitation.” Since then she has spoken around the world about her personal and professional experience of recovery.
For the past ten years, Deegan has worked with a mental health agency, Advocates Inc., to develop the Intentional Care Approach. The Intentional Care Approach teaches workers to purposefully build relationships with clients that support the recovery process. The Approach includes client choice, respectful communication, professional boundaries, confidentiality, cleaning in supported housing, community integration, the role of the direct services worker, and cleaning in group home settings.
Intentional Care is not meant to be a cookbook. Instead it focuses on the many ambiguous situations that mental health staff face every day and offers workers a guide to navigating these situations. If a client offers a worker a pair of leather gloves for a holiday gift, is it okay for the worker to receive this gift? If a client makes a choice that appears to be self-defeating, how should workers engage with the client about that choice? If a client hasn’t showered in a couple of weeks, what would a recovery-oriented approach to that situation be? How can workers avoid stigmatizing clients when they write clinical notes? How do workers balance a clinical team’s need to know with a client’s right to privacy? Intentional Care provides workers with a coherent way to translate the principles of recovery into daily practice.
Five field sites around the country are piloting the Intentional Care Approach. A vibrant on-line learning community, including dozens of mental health agencies, continues to make innovations in the Approach. Mental health consumer/survivors have taken an interest in the Approach. You can learn more about Intentional Care at http://www.intentionalcare.org New York City Voices is fortunate to obtain this in-depth interview with one of the leaders in the recovery field.
Voices: How did you get started as a mental health consultant?
Deegan: Recovery was the buzzword in the early 1990s. The cornerstone of a recovery and empowerment-based approach was already there: client choice, self-determination, self-help, and hope. But the question as to how to implement these concepts in daily work remained. There was a chasm between the concepts of recovery and empowerment, and concrete suggestions how to apply the concepts in everyday work in mental health. The chasm between concept and practice was made more intense when we realize that the people who spend the most time with clients are the least experienced, least trained, most underpaid, and most overworked. In many instances, workers were left on their own to figure out how to translate recovery principles into practice.
Voices: What was the key development? Deegan: In the early 1990’s, I challenged the leaders of an agency that I was consulting with. I said it didn’t seem right to have workers out there flying by the seat of their pants. I believed it was possible to do better than that. So the leaders of Advocates Inc. in Framingham, Massachusetts agreed to take me up on my challenge. We developed a methodology that included extensive interviewing of staff and clients. We met three hours a month over the last 10 years and found ourselves with this new and exciting Intentional Care Approach. Voices: How were clients treated before Intentional Care?
Deegan: Workers are well-intentioned, and some of their behavior is exemplary, but the information coming in from our surveys is shocking. Too much of what goes down as standard practice is mediocre and off base. Take professional boundaries: When a client gives a gift, it’s an expression of the way the client feels. That’s part of the relationship with staff. It’s important to recovery. When a client’s gift is rejected, that’s devastating to the client. It lowers self-esteem.
Voices: Is this kind of incident isolated?
Deegan: Unfortunately no. In our surveys we found lots of examples of practices that conceivably could lower client self-esteem and ultimately hinder the recovery process. For example, with regard to issues of professional boundaries, we found that some workers interpreted professional boundaries very rigidly. Some staff thought they should take off their wedding rings so clients wouldn’t know they were married. We found other staff were hiding their CDs when giving clients a ride to conceal any personal information about music preferences. Some of the other practices we found were staff swearing in the presence of clients or bribing clients to sign treatment plans or even threatening clients with going back to the state hospital if they didn’t behave…For a true picture, you have to multiply these examples-especially the more subtle and benign ones-by 100.
Voices: Why is cleaning personal and public property such an important part of Intentional Care?
Deegan: Cleaning is a huge part. When no one takes it seriously, conditions can really deteriorate. Being in a filthy, unsanitary environment is bad for anyone’s mental health. It also lowers our self-esteem. Programs get defunded because apartments are in a shambles. Often staff gets resentful of cleaning. They ask, “Are we a cleaning service?” Clients can square off against staff and say, “Why should I clean this place? It’s not really my place.” Terrible power struggles result from cleaning issues. That’s why it’s important to have an intentional, purposeful way of approaching these issues.
Voices: What’s the promise of Intentional Care?
Deegan: The promise of Intentional Care is to transform the mental health workforce by training them in recovery-oriented approaches to working with clients. In the 1999 report, the Surgeon General called for all mental health services to become recovery-oriented. Intentional Care is part of the solution toward that vision. It’s not the whole answer but it’s part of the equation. Of course, the other things that are needed include more peer support services, decent housing, etc. But in addition you have to change the skills of the workforce. In the experience of the field sites, it can take a year to two years to train staff in the approach using a monthly meeting model.
Voices: Can you document what you’ve done?
Deegan: Although we’re looking for NIMH (National Institute of Mental Health) or foundation money to research the impact of Intentional Care, we’ve gotten this far without grants. We know the approach is valuable because agencies that use it tell us they are pleased. The most consistent feedback we get is that the approach gives an agency a vocabulary and framework to address recovery-oriented issues related to the real, nitty-gritty, daily work that staff do with clients. It gives you a consistent, coherent vocabulary and raises up the everyday aspect of recovery.
Voices: Where do consumers fit in?
Deegan: Consumers are recognizing the everyday use of Intentional Care. At the Clubhouse of Suffolk on Long Island NY, members are training staff. Peer groups in western New York are excited because training staff makes consumers more powerful. We hadn’t seen this coming. With some stretching it might apply to family advocates who want staff to meet their expectations. The danger is using Intentional Care as a cookbook. It’s a series of algorithms, of decision-making trees. This is very difficult work we do in mental health, very ambiguous work, and yet most workers are poorly trained and paid.
Voices: What are your plans for the next year?
Deegan: Possibly pairing Intentional Care with certain Evidence-Based Practices such as supported employment. I also have plans that don’t include Intentional Care. I’m working with the University of Kansas on researching a recovery-based approach to using psychiatric medications. I’m working on organizing consumers around the country to restore state hospital cemeteries and to collect oral histories so that the perspective of ex-patients is not forgotten in the history of mental health services. I call that collective recovery. I’m working with Advocates for Human Potential to develop technical assistance materials for state Olmstead planning [about the least restrictive settings for treatment]. Voices: What would you like to see in the future? Deegan: I’d like to expand peer advocacy and self-help, and urge consumer-survivors to never again leave their well-being in the hands of others. We need to continue to challenge forced treatment, make programs less coercive and more attractive to clients, and we need to continue to speak for ourselves. We are facing dangerous trends that undermine self-determination. These would include certain aspects of the new field of genomics/genetics as well as the emergence of psychiatric drug implants. This is where knowledge of our history – of eugenics, forced sterilization, and a host of barbarous, brain-damaging “treatments” such as lobotomies – is instructive. We need to learn from this history and never again leave our fate as a devalued people in the hands of well-intentioned others…Finally we need a viable cross-disability movement. When we come together, people with disabilities are a significant voting block of 43 million people! That’s power. That’s a voice to be reckoned with! We must shape our destiny and speak for ourselves. That’s an empowerment vision.