NAMI and I

 

First, a bit about me.  I was first diagnosed in 1973 in Cleveland, Ohio with schizophrenia.  For the next ten years, I took a daily cocktail of Stelazine and Navane  (two powerful anti-psychotics), Sinequan and Imipramine (two anti-depressants), and Cogentin, Benedryl and Valium (for side-effects).  With time (and each new therapist/psychiatrist) my diagnosis changed.  I was labeled with all the schiz- labels (schizoid, schizotypal, schizoaffective, etc.) and then passed on to the various "mood" disorders (manic-depression, bipolar I and bipolar II and major depression).  At one time, I was labeled with 8 of the 12 different personality disorders.  My most frequent diagnosis was "Borderline" (usually in combination with others).  Eventually, my diagnosis went to the dissociative disorders (multiple personality, dissociative identity disorder) and eventually to PTSD.

 

Over the course of 12 years, I received "treatment" on an inpatient basis over twenty times including a stint at state hospital.  I attended partial hospital (intensive day treatment, 5 days a week) and I went to day treatment for years.  When they were going to separate the day treatment into "high functioning" and "low functioning," I was going to be placed in the "low functioning" group because I was so non-compliant and treatment resistant.  Over the years I attended group and individual therapy.  I received counseling in both the public and private sectors.  I was forcibly treated and civilly committed.  I was jumped upon and placed in seclusion and restraints for wanting to self-harm.  (I guess they figured that it was better if they harmed me than allowing me to harm myself.)

 

Outside of the mental health system, I had a wife and three children.  I was a good worker and a good provider.  I eventually went back to school and finished summa cum laude with a degree in philosophy and President of the class.  I went on to law school and eventually dropped out.  I went through vocational rehabilitation where they sent me to a sheltered workshop where I stood all day next to people who were severely mentally retarded and we counted ten fishhooks to a little plastic bag and then stapled on a label.  If I wasn't depressed before that episode, I surely was after.  In the meantime, my wife called for support from NAMI (around 1983).  She was told to, "leave him" because it would be impossible to have a relationship with someone with a mental illness.

 

I eventually got into peer-support, self-help groups and finally received private group therapy for the issues of incest and child abuse that I'd survived.  I began a long and difficult task of recovery.  I found that helping others seemed to help me so I started over 40 self-help, peer support groups around the state of Colorado and built it into a statewide consumer network.  When we came together at our first statewide conference in 1987, I was unanimously elected the first President of the organization.  A couple years later, I was hired to work in California and be Director of a county advocacy organization that I built into a million dollar agency.  There we legally represented people in civil commitment hearings and forced medication competency hearings.  We monitored Board and Care homes and other facilities and we monitored the use of psychiatric drugs and the use of seclusion and restraints.  I lived in Oregon with my current wife for over ten years and I remained active on local, state and national levels in mental health activism. 

 

Over the course of the years, I have survived five heart attacks and I've got a stent implant and a defibrillator implant.  I believe that my heart problems are at least partially due to the many years of psychiatric medications and overdoses with those medications.  While in state hospital, I was very depressed and suicidal and decided to stop all medication including my high blood pressure medication.  I figured the surest way to die would be to have a heart problem.  However, I started to get better and got so well, I was discharged.  I later read the PDR and found out that the primary adverse effect of the beta blocker heart medicine I was taking is major depression.  So, my non-compliance probably saved my life.

 

I've written a book about my story.  It chronicles my journey from being abused as a child to being abused as a mental patient to my later recovery.  It's not published yet and may never be because I am not sure I wrote it for anyone besides myself.  However, if you're interested, let me know and I'll guide you to parts of it.

 

NAMI

 

I have no problem with those who wish to interact with NAMI.  That's a personal choice.  I respect people and their personal choices.  I hope others will respect my choice to not have anything to do with NAMI.  I do not personally care for NAMI and have vehemently opposed NAMI on National, State and Local levels for over 20 years.  Reasons follow:

 

In 1985, I applied to be on the Board of Directors of NAMI-Colorado.  At that time, NAMI was not inclusive of "consumers" and I got on because I argued that although I had been psychiatrically labeled, I was still a "family" member.  In fact, I'd had to deal with a younger brother (labeled schizoaffective) who would show up on my doorstep at 3 a.m., drunk and on drugs and suicidal and carrying a loaded gun.  NAMI-Colorado finally voted me onto their Board of Directors where I served a three-year term.  During my term, I performed outreach and support and helped to start about 18 local NAMI groups around the state.  All that time, I was not truly welcomed into the "family member" circle.  I was considered a "consumer" member of NAMI.  I never did understand the division of us versus them that separated us into "consumers" and "family members."  All "consumers" ARE family members, albeit psychiatrically labeled.  However, not all family members are "consumers."

 

I really tried hard to "change" NAMI from within.  I worked hard to earn their respect and instead I saw patronizing attitudes that were quite hurtful.  I had a friend (labeled with schizophrenia) who fancied herself a poet and she wanted to give dramatic public readings.  NAMI-Colorado would sponsor public readings but my friend was really bad.  Her poetry was awful.  However, NAMI folks would stand in the back of the room and exclaim how wonderful it was that this poor schizophrenic was "performing" her art.  Their patronizing and paternalistic attitudes made me sick.  I resigned in disgust and have since refused to have any part of turning me or my peers into "poster children" for "mental illness."

 

We hosted the NAMI National Conference in 1988 and for my efforts, I was given a recognition award from NAMI National.  I dined with Laurie Flynn (NAMI National Executive Director), E. Fuller Torrey (NAMI Board Chair) and Patty Duke.  I helped get the first "consumer" (Tom Posey from Montana) elected to the NAMI National Board.  I helped start the "sibling" network.  However, I finally gave up on the possibility that NAMI could or would change.  I saw groups introduce motions at every annual conference to make it easier to electroshock people.  I saw too many instances of oppression and patronization.  While I believe NAMI and many NAMI folks are sincere and that there's a role for support, I believe that when they cross into the political realm, they are stepping on our voice.

 

I have since fought against NAMI because they believe in and advocate for a "medical model" where they view psychiatric disorders or emotional distress as a neurobiological brain disorder, disease or illness.  The fact is that there are no biochemical markers, no biological tests, no hard evidence at all, to "prove" the existence of "mental illness." Proof = demonstrate a reliable association between a clearly specified pattern of observables and other reliably measurable event(s) which operate as antecedents. (This is same level of proof used for TB, cancer, diabetes, etc.)

 

I don't care if people find solace in having a psychiatric label or diagnosis.  I don't care if people choose to view their situation as a disease, disorder or illness.  However, I'd appreciate the same consideration for myself.  I choose to not accept that I have a disease, disorder or illness.  I have thoughts, moods, feelings and emotions.  All of those are "me."  They are a part of who and what I am as a person.  For example, I used to get locked up because I'd tell some mental health professional that I "felt" suicidal.  I still "feel" suicidal often.  However, I no longer get locked up.  First, I am no longer stupid enough to tell my feelings to a mental health professional and have that poor person panic.  Secondly, I have learned to cope with my feelings and not "act" in silly ways that                                                                            harm me or endanger others.  I "feel" my feelings and allow them to flow through me and yet I get on with life and go through all the motions.  I don't believe my feelings are a "mental illness" as many within NAMI would espouse.  Also, much of the source of my feelings of distress is the fact that I've survived severe child abuse, neglect and trauma.  NAMI hates to acknowledge the fact that family members can be a source of this sort of pain however, more and more studies are proving that 90% or more of us who have been labeled and treated by the public mental health system are survivors of abuse, neglect and trauma.

 

Years ago, I created a ten week curriculum to help teach "consumers" to learn to become providers of services (Peer Supporters, Case Manager Aides, etc.).  I have successfully helped people to learn to manage their behavior in such a way that they can get on with life and live it to the fullest extent possible.  I don't help people overcome a disease, disorder or illness.  People take responsibility for their actions and behave appropriately in our society.  If someone hears voices, they learn that it's okay to interact with those voices if they choose to do so.  However, they cannot interact with voices in a loud and belligerent manner in a crowded grocery store at rush hour without causing a bit of panic and then perhaps suffering the consequence of getting locked up.  If they choose to interact with voices in a way that doesn't get in other people's "space" then it's fine.  I had one woman who liked to get naked.  She'd go to a public park and hang her clothes on the trees.  The police would get called and they'd wrap a blanket around her and take her to the psych unit where she'd get drugged for a couple of weeks and then sent home.  I helped her learn to make better choices about being naked.  I didn't judge her.  I merely suggested that she could be naked in her own home (with the doors closed and the shades drawn).  Or, she could visit a nude beach or go way back up in the woods where she could be alone and not in anyone else's "space."  NAMI usually prefers to panic about people and suggests stronger civil commitment laws to forcibly medicate people.

 

If our civil rights movement were for people with physical disabilities, it would be easy to say that we speak for ourselves and we don't need mom and dad to speak for us.  Many "consumers" have joined NAMI and many have said that it was the only game in town.  I suggested to those folks that they start their own game.  I can think of nothing we can get from NAMI that we can't do as well or better ourselves.  It's not parents whose lives are shortened by 25 years or more.  It's not parents who are forced to take the drugs.  It's not parents who get locked up.  It's not parents who are forced to live in poverty.  It's not parents whose rights get trampled.  If we have rights, it's because we fought and gained those rights.  They weren't just handed to us.

 

NAMI supports CIT (Crisis Intervention Team) training.  It's sort of scary to watch police being trained by NAMI.  I repeated hear that NAMI supports the use of TASER's.  That's because, like the police, they consider TASER's to be "less than lethal" use of force.  The problem is that again, it's someone else speaking for us.  We know how messed up the drugs make us.  They can affect our ability to regulate heat in our bodies and our ability to react and our balance.  Because of the way the drugs can impact our bodies, TASER's may in fact be a very lethal force.  This is just one example of how dangerous NAMI can be to our lives.

 

Another problem I have with NAMI is that they frequently indulge in worst-case-scenario fear mongering to influence public policy.  They will cite a single extreme case in order to get media coverage and pressure politicians to vote in favor of oppressive legislation.  In New York, NAMI publicized the case of Kendra Webdale who was killed by being pushed in front of an oncoming subway train by a person who was allegedly psychotic.  The result was passage of legislation mandating outpatient civil commitment.  A single case, used to terrorize the population and pressure legislators is a horrible way to spread stigma and discrimination against people who have been labeled as having "mental illness."  It's also a way to forcibly erode our civil rights.

 

Civil commitment is absurd on it's face.  It's all about us being a pain to family members so they want to forcibly control us by making us take drugs to keep us in a zombie-like state.  No one can predict violence.  The APA has repeatedly admitted this.  So, no one knows for certain who may or may not actually be a danger to self or others.  What is known for certain is that force and coercion are damaging to the individual and contribute to a sense of hopelessness and powerlessness.  To civilly commit someone to allegedly keep them safe is fanciful enough but to do so on an outpatient basis is basically just using judicial muscle to force compliance with medication.  To see how absurd this is, just imagine the harmfulness of a person with diabetes eating a candy bar.  Yet, we would never abrogate the civil rights of someone for something this absurd.  Imagine a person with asthma lighting up a cigarette or walking out of the house and forgetting their inhaler.  Certainly, they are at risk of "self-harm" but no one would arrest them for this behavior.  Imagine a doctor telling us we're at risk for being overweight and strongly urging a low-cal diet.  Would we be at risk of being arrested if we went through the McDonald's drive-in?  Yet this is the direction f-AMI-ly members want the law to take.

 

When I taught my kids to ride a bicycle, I did the typical parent thing and ran alongside while holding the back of the bicycle seat.  Eventually, I let go.  I knew with almost absolute certainty that my child would fall and skin a knee.  It was even possible that they might crack their skull but, I had to let go.  If I didn't let go, my child would never know freedom and personal growth.  I suppose I could have held on forever.  I could have never let go.  I could have said that I love my child so much that I wanted to protect them from getting hurt.  But I don't believe this is love.  I think to hold on forever is abuse.  It denies the person the opportunity to grow and learn and experience independence and freedom.  I contend that this is what many f-AMI-ly members are pushing when they advocate for a stronger "safety net" from the system.  Protecting us from harm in the short run stifles our personal growth in the long run.

 

Family members in NAMI seem to find solace in supporting a medical model of oppression.  The medical model is another absurdity.  As I mentioned earlier, there are no biochemical markers, no biological tests, no hard evidence at all, to "prove" the existence of "mental illness."  There is only a pretend or pseudo "medical model."  This pretence tries to gain credence by twisting and distorting reality.  Psychiatric institutions are called "hospitals" although there's no oxygen coming from the walls, the beds don't adjust, the nurses don't personally deliver medication or offer back rubs to those confined to the bed and there's no nurse call button on the side of the beds.  Psychiatrists call unpleasant and sometimes lethal adverse effects of medication "side effects."  This minimizes and trivializes our experiences.  If they want us to take a medication and we complain about how it's hurting us, they basically say we should just get over it and take the medication anyway and learn to live with the "side effects" or else they prescribe another potentially debilitating medication for the "side effects."  People in the mental illness realm call the torture of bondage and solitary confinement (restraints and seclusion) treatment.  In every other possible realm on earth this is called torture.  Only in psychiatry can we be locked up against our will, stripped literally and figuratively (of our rights) and forcibly injected with powerful drugs and then have our insurance billed for this "service" and have it called "treatment."  I've even heard the air that we breathe called "treatment" (milieu).  We get treated with gentle caution at times because people are afraid they might "trigger" us as though we are a loaded gun with a light firing mechanism, ready to go off in an instant.  We get told that we "suffer" from mental illness (whether we do or not).  We get labeled with a psychiatric disorder instead of understanding that the real issue causing our distress might be related to trauma, or poverty or joblessness or something else that is real.

 

If you had a thyroid out of whack and went to a legitimate medical doctor, you'd have blood tests done and the doctor would prescribe treatment that would restore your energy levels.  If however, you want to a psychiatrist, they would assess your behavior and determine that you're either too high energy level (manic) or too low energy level (depressed) and they'd prescribe lithium or some other drug and they'd label you with mental illness and say that you'd have it for the rest of your life.  The former is legitimate medical model.  The latter is malpractice and it happens every day in this country.

 

NAMI is engaged in advocacy but it is not our advocacy.  NAMI wants "recovery" but to them, recovery means compliance with medications so that a person is no longer a community disturbance or family disruption.  It doesn't matter if the medications turn a person into a zombie with a brain like cotton candy or sludge, as long as the person doesn't disrupt things.  Of course NAMI would like for us to "recover" and be our old selves but, they are too afraid to admit that recovery might be possible without drugs.

 

Our "recovery" is more meaningful to us.  First, we are part of a civil rights movement.  We want to live as long as everyone else and not die an average of 25 years sooner.  We don't want to live with mom and dad, in institutions, in shared apartments, in mental patient ghettoes or any other fabricated and supervised living.  We want the same piece of the American dream as everyone else; a piece of property and a nice home of our own.  To this day, in most mental health centers, there are separate bathroom facilities for staff and clients.  This is reminiscent of the separation of black and white facilities in the deep south in the 1950's.  We don't want extra but we do want a level playing field.  We want the same jobs and other opportunities as everyone else.  We want a vocational rehabilitation system that actually hires us, not just finds us jobs with someone else.  We want the right to refuse medicine that hurts us but we also want access to that medication if we choose to take it.  Both rights are afforded to others and we just want equality.  We don't want to be called "mental patients" or mentally ill or psychiatrically disordered when we are actually survivors of abuse, incest, neglect or other trauma.  Don't label us, label the act and address how we might mitigate our damage and loss by legally balancing things with the perpetrators (especially family members).  When we are abused, neglected or otherwise traumatized by family, there is an especially keen sense of betrayal, a tainting of trust.  Don't deny this by hiding behind NAMI.  NAMI must stop being a cover-up for hurtful people.  We want acceptance by our community and we want full inclusion.  We want understanding that our intelligence isn't necessarily affected.  We want understanding that "mental illness" isn't 24 hours a day, 7 days a week.  Mostly, we make good decisions (get out of bed, eat, dress, interact all day, etc.) and it's only a small piece where we might have to acquire different coping skills.  Quit exaggerating our "illness" and start supporting our strengths.  Stop limiting our rights and realize that every person on earth is in imminent danger of becoming as emotionally overwhelmed as we have been.  Realize that those of us who have survived such overwhelm are the experts on how to survive it and can help others with our experience and expertise.  We don't want voodoo psychiatry to keep adding to our distress and torturing us in the name of "treatment."  We want true recovery and peer support and self-help and the skills to manage our life without medical or court or family intervention.  We want the right to make mistakes and not be judged as incompetent.  We want the opportunity to succeed and to get on with life just like everyone else.  We want to be fully human.  I don't think these things are possible while NAMI continues to fight against us.