February 26, I left behind locked, steel doors, inmates, languishing, wandering through cinder block rooms and long hallways. The core of their humanity being drug drenched, blunted into the vapor of ghosts. This last visit I was not heavily drugged. They were no longer ghosts. I saw their humanity. Some became my friends.
I had walked out of those doors six times before. This time I would treasure, not trash everything that reminded me of this experience: the sponge rubber crafts I made and the clothes I wore over and over. For once, for this two-month stay, I had not been really drugged. I wanted to know who these people were, why they were here.
Some had never left over the past seven years. Some had passed decades in the State Gulag. Some had rotated in again, the time spent outside the doors getting shorter and shorter. For those rotating in and out, on the outside they remained wards of the psychiatric state. The servants of the doctor’s will were compliance-forcing families, community service boards, then group homes. The outside became even worse than the Gulag.
This stay, I didn’t stay ten, twelve hours in my bed. I got up before dawn, and I would sit in my chair. I would think of the woman in the other bed who began this journey into decades of diagnoses, incarcerations, and chemicals with a temporary psychosis caused by a laced bag of weed. I could see down the hall the distorted figures and faces of grown children who were never allowed to grow up because their parents would never be finished disciplining them. I heard the men who moved around and around in front of the nurses’ station who could no longer form words but only made grunts, mumblings and one sometimes made soothing, resonant humming. I thought of the ‘Not Guilty by Reason of Insanity’ inmates who were much bulkier, stiffer, flatter in affect, shuffling slowly on the other wing. I made up for those seven years so drugged I couldn’t shed a tear.
At the rate I was going, I should have had four, maybe five return visits to the Gulag during these last two years. I had broken the crescendo of my breakdowns. I had found the path to freedom, hope, life, health. I had found a psychiatrist who took me off the numbing, psychosis-causing drugs. He treated me for metabolic illnesses and trauma.
There’s not much to do in the state hospital but watch TV. I watched the great epic story “Gandhi.” I had seen his brother Martin’s story just weeks before. I’d read a copy of his ‘I Have a Dream’ speech that was passed around. Changing injustices takes endurance, inspiration, suffering, and, yes, assassination. Gandhi became one with the peasant, one with the prisoner to set them free.
Becky, my advocate from Richmond, came for her once a month visit. She wore her hair very short, with long delicate drop earrings that trembled as she spoke, her eyes drilling into mine. On the last visit, she had kept me from “pissing my treatment team off” (her words). My psychiatrist had threatened to put me on the same heavy dose of medicine she’d put me on during my last visit. And she didn’t care that I had deadlines to meet if I was to go to grad school next September. In the mornings, in my chair, I often visualized telling that control freak off. Becky stopped me from living my fantasy. She said I needed the doctor to deem me “competent” so that I could put an advanced psychiatric directive in place and make it harder for her to crank up my meds. I was cheeking most of them anyway, but it was the principle of the issue. The neuroleptics made me schizoaffective!
I had told the new director that the Institute’s psychiatrist told the judge presiding over my 180-day commitment hearing that I was not a threat to myself or others but that I had “set fire” to myself (five years prior). That I was violent and needed to be maintained on antipsychotics. That I was not cooperating therefore I needed to be committed. I started our conversation by asking if he had read Anatomy of an Epidemic. He had. So he quickly understood when I explained that the incident with the fire had happened during an abrupt antipsychotic withdrawal psychosis, a psychosis caused by the changes the drug had made to my brain. I told him, “You need to change how medication management is taught in this institution.” If I had known the drug would make my brain grow thirty percent more neurotransmitter receptors and receivers, I wouldn’t have stopped it abruptly. He asked me when the date of my appeal was.
I then told Becky that the following Thursday I had a conference call with my unusually decent court-appointed lawyer and my outside psychiatrist, who said, “The fire happened a long time ago.” He had seen me improve so much that he took me off my medication.
My lawyer explained to him two things: The judge had never heard any evidence like this (He was going to take evidence over the telephone). Patients always needed the prescribed medication for life. He also said was we would stand a better chance to reverse a treatment hearing than a commitment hearing, because the evidence showing I didn’t need the drug could not be brought up in a commitment appeal, but could in a forced treatment appeal
Becky and I were interrupted by a fire drill. As we rushed to the day room, my social worker came up and put her arm around me. “How about having one of your boys come get you at 1:00 pm tomorrow?”
Becky and I finished our discussion in a private room. I explained to her how I had been caught cheeking the pills. The Institute’s psychiatrist was discharging me the day before my appeal, despite my being non-compliant. Discharge orders had come from the new director. He didn’t want the Circuit court judge to hear an alternative psychiatrist’s testimony. I wanted him to hear my doctor say he took me off the medicine because I’d improved so much. I told her I wanted to publicly refuse the antipsychotic and force the Institute to not discharge me and to take me to court to force-medicate me, so that the Circuit court judge would hear everything during the appeal.
I had one major problem. My acting representative agent, my youngest son, had changed his mind about supporting my decision to not take the antipsychotic (I was refusing it before my commitment hearing.) If I refused it again and he didn’t back me, I would be force medicated, and there would be no treatment hearing to appeal to the Circuit court at all. She told me to swallow the pill this one time and not cancel the court hearing until my son and I were thirty minutes out the door. That’s just what I did. I was no Gandhi.
What could I do to help my friends? I passed out my website card to those who would get out, and to those could give it to family. I got some phone numbers. I thought of getting a meeting place for us. I called the unit. I tried to help my friends think through what they needed to do to make appeals, etc. I felt powerless.
Then I read on a listserve that Tina Minkowitz, founder of the NGO CHRUSP, the Center for Human Rights for Users and Survivors of Psychiatry, was going to Geneva to present evidence to the United Nations Human Rights Committee that its members needed to question the United States government about the use of forced psychiatry in this country, among other issues. If the evidence impressed the Committee members enough, our issues would be presented to the US government for a response. In October 2013, the evidence and the government’s responses will be presented.
I got an impossible idea: I would go with her. I didn’t say anything to my family. There might be problems getting a UN pass for me anyway, so I waited.
After swearing he would never take me back to see my psychiatrist, who had taken me off my meds, my concerned son took me. And for once he went in with me. The good doctor read my new blood tests. “Ah, your D3 levels are very low. High levels will prevent mania.” He kept me on a very low level of Tegretol. He prescribed Dalmane, a sleeping benzodiazepene to use only if really needed and not for long. Then he asked my son to bring me to his office any day of the week the next time I was acting strange, and he would see me.
I saw my energy coach, Dr. Linda, too. She tested my meridians. All was fine until the very last. The flight/fight/freeze energy force, the strongest meridian, was out. She showed me how to manipulate it and, presto! It was fixed.
I will never neglect my energy exercises again, or stop taking my Vitamin D3. And, I will set my sights on building a real support system. I aim at getting off the Tegretal, too.
Tina could get me the UN pass. I steadily, calmly began to discuss going with my children. No way. I had had a breakdown. I resorted to the medical mentality: I reminded them I would be taking Tegretal, and I would have Dalmane if I had trouble sleeping.
But then it was the money. Tina could help with lodging, but the air ticket had gone high. The boys— I three adult sons— would not let me spend the money. Then my daughter offered to help. The boys calmed down. I finally got clearance for take off the last day the discounted air ticket broker could sell it to me online.
Geneva, Switzerland. I had never been there. But I had lived in Paris, London, Rome. But that was thirty years ago. I had concerns. I had just been institutionalized! Could I handle it?
Tina guided me to Airbnb, a list of bed and breakfasts online. I found a room in Francesca’s flat. She was a native of Rome. Tina connected me to Victoria, who was at the International Disability Alliance office and was to meet me at the train station on the morning of the 18th, when we would go together to get my pass, and then across town to the meeting.
My first problem was that the free bus pass machine at the airport baggage picket up was broken. I went to the bus stop. I had Swiss francs, but I needed change to buy a ticket. I saw this man behind a clear screen. I thought I asked for change. He gave me a train ticket. My French would get better fortunately.
I made sure I got on the train to Geneva.
My next problem was that when I got off of the right bus stop for Francesca’s, I couldn’t find her address. I stopped a woman walking a little dog and asked if she had a cell phone. She was a UN employee in the Human Rights division. The UN is huge in Geneva. She called Francesca and escorted me to her flat.
Francesca had experience presenting to the UN Human Rights Committee, as well as addressing the plight of the untouchables. We had much to talk about. I felt very comfortable telling her my issues. She was very gracious. She told me about herself. She was doing life coaching for clients. She walked me to the Russian Church around the block.
Francesca explained to me that the Committee would hear many causes in this one meeting. I would have three minutes to speak. I spent most of Sunday afternoon writing and practicing, trying to get my message short enough to read in three minutes.
I met Victoria and we got my pass and were on time for the meeting at the Palais de Wilson. The building was a classic mansion-style office building, with huge chambers, wide staircases, long hallways and tall ceilings.
Everyone was dressed smartly. I had gained 15 pounds in the hospital. And I had my burns all over my neck and arms and face. I had a lot to feel self conscious about, but I didn’t. I had a purpose, and it really was not about me. I had picked up a black cashmere sweater and a red wool blazer along with two mix and match skirts at the Goodwill before I left. I felt passable.
I met Tina for the first time. She told me I would have two minutes. I put away my script.
There were about eight different issues represented by one or two people, each seated around a huge oval, polished wood table. The Committee sat at a long rectangular table at the far end. There was the Director of Human Rights at the ACLU, the Director of the Washington Bureau of the NAACP, and a law professor from Iowa, to name a few. I just took it all in. I tried to listen to each one. A woman held time cards to help us pace and conclude our speeches.
I listened about drones, ‘no fly’ lists with no judicial protocol explaining why people can’t fly in or out of the US anymore, and racial profiling that still persists.
Our issue had just had a huge shot in the arm: The UN Rapporteur had announced that forced psychiatry was torture. We had no rights, no freedom, no voice. As much as I was hurting for my friends, I was only an expert in one thing: what had happened to me. I would have to talk about myself.
When it came our turn, Tina precisely communicated our issues.. She explained the new panic that’s been sweeping the United States since Newtown, as well as the research showing that those with psychiatric diagnoses are no more violent than others. She implicated the antidepressants that have labels warning of suicide and homicidal thoughts when taken. The experts were insisting upon psychiatric profiling to locate who needed to be controlled. They wanted to screen the children. We are being drugged against our will, in violation of our human rights, and not told of the dangerous nature of what we are forced to take. She suggested that the Committee ask the United States if the government plans to stop psychiatric profiling, to repeal mental health laws and ensure that mental health services are based on a person’s free and informed consent, to end double discrimination in prisons, and to ratify the Convention on the Rights of Persons with Disabilities without any reservations, understandings or declarations.
The timer held up the ‘end’ card for Tina to see. I quickly introduced myself by name, and then said, “I am a user and survivor of psychiatry.” I had just said to a roomful of strangers that I, myself, was one of “them”, the mentally defective and completely discredited. I had to make this testimony indict psychiatry, not me. I aimed at the DSM and the chemical imbalance theory, and that psychiatric drugs can cause chronic mental illness. “I have had three different diagnoses. I had issues, but they were spaced out over three decades until antipsychotics were introduced to “prevent” a crisis. Then my diagnosis became ‘schizoaffective’. Within five years I had ten hospitalizations, and the crises were coming closer together and lasting longer. I accepted that one day I would live at Southern Virginia Mental Health Institute.” I couldn’t believe myself!
“Then I found an alternative psychiatrist, and he treated me for metabolic issues and trauma. He weaned me off all psychiatric medicine. I felt so much better, I had a future again, and my life had come back.”
“Then I had another issue, and again I was admitted. I was diagnosed ‘bipolar’, but the psychiatrist who attended me had been my psychiatrist during four years of rapid cycling. He treated me as ‘schizoaffective’. He prescribed me Tegretol and the maximum dose of Zyprexa, an antipsychotic. I immediately had a psychotic event. The dose was cut in half. I then thought I was dying and dialed 911. I begged them to give me no more. I calmly refused the medication. They force-medicated me. I then pretended like I took the meds but spit it out. When I told my psychiatrist he had me transferred me in handcuffs to the state public hospital.
“The doctor at Southern Virginia Mental Health Institute allowed me to refuse the antipsychotic because I was calm and my representative agent backed the decision up. The doctor took me to court to have me committed for 180 days. She told the judge I was not a danger to myself or others, but I had set fire to myself so I was violent and needed to be maintained on antipsychotics.
“I had to explain this fire issue quickly. The drug alone caused that psychosis. I felt a little panic and proceeded. I explained the science behind positive symptoms while on antipsychotics and why withdrawing them abruptly can cause a drug-induced psychosis; the brain compensates by growing extra receptors and transmitters, 30% more to get around the transmitter blocker. I was never informed about what the drug created in my brain by any psychiatrist or in Medication Management Class at the Institution.”
I ended by expressing that I didn’t have more time to go into all that I saw during my last stay at the institution, since I was not heavily medicated, and very aware. I hoped that I would have the chance to share their sad stories. Then I announced, “I am applying to graduate school.”
Tina gave me a nod of approval. I felt OK. I didn’t feel embarrassed at all. I felt no pigeonholing, no belittling, no patronization. This was not America!
When the round was over, it was announced we’d each have another minute. So I started with a very small intro about the conditions: cinder block construction, no counseling, the only place to gather was around the nurse’s station, and there were no chairs to sit on, no one to talk to who wasn’t medicated. There was a TV room and it was constantly turned on.
Then I started on the horror stories. I told about seeing a pregnant woman thrown into seclusion. I told about the half dozen women who told me they’d started off with bipolar diagnoses, were given antipsychotics, and then became schizoaffective or schizophrenic. I explained that the antipsychotics can not only cause psychotic symptoms, but also actually cut the connection between the forebrain and the motor brain and that is a chemical lobotomy. Patients walk around like zombies, muttering to themselves, openly psychotic, but unable to act. Before the age of psychiatric medicine, this was not the course of the disorder at all.
Then I jumped to another group. I described the adult children who were scapegoated by their family into psychiatry, and dangerously over medicated.
I explained that the staff used psych medication for discipline. My medication increased 166% after I tried to escape.
A patient who bothered the nurses during medication time, a no no, was told to ask for a pill to relieve her anxiety. She was given Thorazine, a powerful antipsychotic. Not only was there no informed consent for this woman, but she was also misinformed about the drug’s effects.
My time was up. I felt triumphant. I was followed by another ‘good show’ from Tina.
Over the course of three days, we had at least four mini-meetings. Tina took me to meet various members of associated disability agencies and a Human Rights Committee member. People spoke in sentences composed of so many acronyms that I would doze off! I would shake myself to stay awake. That was embarrassing.
The person we met with were always polite, and I had my time to talk. I told each and every one of them that psychiatry does not deserve the power it has. People should be free to choose alternatives. The medications might be useful in stopping a crisis, but to insist on using them over a lifetime deteriorates mental health and is a marketing strategy.
We also had a brief meeting with all the representatives of the NGOs and a couple of Committee members so that a representative Committee member could ask us some questions. He asked Tina if what she was asking for was an assurance of free and informed consent and a halt to psychiatric profiling. She confirmed this. She was pleased. She said that somebody we had met with privately had obviously informed the Commissioner that these were the two issues CHRUSP wanted. It was a sign our issues were taken seriously.
Two members of the NGO’s asked me for guidance about alternatives for distressed loved ones. I handed them my website card. Several who may have been members on the Committee or representatives from the NGOs approached me privately and thanked me for coming and speaking. One very tall, kind, gray-headed man spoke to me so warmly, and told me he hoped I would return in October! Tina told me he was a Committee member from the Netherlands. That was a sign we were on the agenda for investigation. An NGO representative came to me and excitedly said that we should have an alternatives convention.
I felt heard, respected, and at times, loved. When we met with another International Disability Alliance official she got so excited that she tried to make last minute meetings with ambassadors from Austria and New Zealand. They were on the board to set guidelines for minimum standards for prisoners. We met with the Austrians right away.
We sat down with the Austrian assistant ambassador, and I told him that I only knew one ‘Not Guilty By Reason of Insanity’ inmate who didn’t regret pleading that way. Most often, they’d been misled by their lawyers and told that the stay would be short, when in fact it could go on for years. One inmate I knew would be taken to court by his psychiatrist to be force-medicated every six months during his seventeen years of confinement. The doctor would declare he was violent. His lawyer would appeal but then it would be moot because the six months would be up, and the process would happen again.
I told him about my roommate, who’d been held at Southern Virginia and after her release went to New York and got in trouble with the law. She was offered a plea deal: a return trip to Southern Virginia. She chose instead to go to prison.
I went on. Conditional release can go on for a lifetime. One woman has to take her antipsychotics in front of a camera every night for the rest of her life. I explained that her crime was done during an abrupt withdrawal of an antipsychotic—a psychosis caused by the changes the drug had done to her brain!
I told him that psychiatrists do not deserve this kind of control over people, and that psychiatry is a failed chemical experiment. He asked if I had references. I gave him my card. I left him about ten biographies of inmates that I had written up. (Victoria took the bulk of them to pass to the Committee members.)
I love Europe. Being on a lake, Geneva draws the moisture and it drips from the clouds that are most always overhead. It’s a business hub. The people are not friendly, but they are helpful when asked. I walked to the lake and saw the marina, I walked through the big park in town. I went to the grocery store. Eating out was just way too expensive. Francesca and I often ate together.
The night before I departed, Francesca told me she was proud of me. Her new boarder, a US medical student, gave me affirmation too. He said he hated his psychiatric rotation.
I’d worked hard and slept well. Francesca got up with me at 4:30AM to walk me to the right bus stop. We have stayed in touch since.
And of course, my plane was late. Of course I missed my connection. Of course I had to transfer by metro and bus from Reagan International to Dulles Airport in Washington, DC. But I remembered chocolates for the children, and I did pick up a watch for my son, which he adores (plus, it cost less than he said I should spend!)
My children have relaxed, because Mom made it overseas and back. I have a little more freedom here.
I am not finished with this work. Almost everyday I think about Waneta, a 40-year old black woman. She’s very round, pulls her hair back tied with a lime green scarf she won at bingo. She wears pink-framed sunglasses and pink lip-gloss. Her brother comes down from Maryland once a month to visit her. I hope she gets my website address to him soon. When I call, she laughs and says she forgot to. I gently remind her. It’s so hard to remember anything on so much medicine.
She has rotated now for two decades, first from family and back, most recently from a group home. She’s on Ativan, Zypreza, shots of Prolixin. She was first diagnosed ‘bipolar’ and now she has ‘schizophrenia’. She’s stiff, slow moving. She says some unreal things at times. I just listen.
After she takes her meds, she has to sit in a chair for ten minutes, because she was caught spitting them out.
One pre-dawn I heard crying in the early morning, sobbing. I went down the hall to see who it was. It was Waneta. I told her at breakfast I had heard her crying and asked her why. She said, “I’m so tired of being here.” This time, “treatment” has lasted close to a year.
Waneta rushed towards me. I was seated as if waiting for my blood to be drawn. She said something to me in her soft way. She told this scar-faced woman, “You are so beautiful!” In a graceful move she sat and pulled me with her soft arms into her large breasts. “I’m going to miss you.” Then she said it again. “You are so beautiful!”
When I told her an official from the United Nations has proclaimed that forced psychiatric treatment is torture, and I told her I was going to tell our stories in Geneva at the UN, she said, “That’s important.” It confirmed what she sensed. What she has endured is not is not mental health care. It is torture.
We are at war with a dominant “mental health” mindset that is bullying the United States and the rest of the world into allowing psychiatry to control how we think about ourselves, to teach us to scrutinize each other, and to force us to go on its rack of treatments if we fall outside of ‘the norm’. But we are getting weapons that can shake psychiatry’s grip on humanity.
We are building a mighty arsenal. We have new research exposing the truth about standard practice psychiatry. The UN Rapporteur’s announcement that forced treatment is torture can land a powerful punch. If this Human Rights Commission announces that psychiatrists in the U.S. must give free and informed consent and must stop psychiatric profiling, we will have a third, powerful ax to wield at the root, the headquarters of this hegemony in the U.S.
Good job, Tina! You have built bridges with international humanitarians! They see our sufferings. They care deeply about us! My friends no longer invisibly suffer behind locked steel doors.
Tina needs to put together a great delegation for October’s showdown with the US government. She needs volunteers to go to Geneva and money to get them there. So please support CHRUSP.
We will have a lot to say. It will be a big job to get the news out, but I believe the world is ready to listen.