Freedom

This talk was delivered originally in February 1998 at the Alternatives '98 conference in Long Beach, California, and then in March to the Second Opinion Society, an antipsychiatry group in Whitehorse, Yukon.

I'm going to talk about freedom in a personal context, because when I speak from what I've felt and seen, there's a better chance that I'll make some kind of sense. I'm going to talk about how I got free from psychiatry and how I handle life now. About being locked up, and about my friends being locked up. About what it means to be locked up, and what it means to be free. And I'm going to talk about how I believe we can help free each other.

My friend Suzanne was locked up, put in the seclusion ward of a general hospital for eight days, and debilitated with major tranquillizers, before they put her on the assessment ward. There, she was assessed as incompetent and a danger to herself. She spent ten weeks of last summer receiving professional help in two hospitals.

It took her six months to begin to recover from that professional help, and to get off the drugs they addicted her to. Suzanne says: I worked so hard to become the version of me they wanted me to be, that I forgot who I was. They obliterated the "me" I knew.

Of a co-patient, Suzanne says, "She was doing all this writing when she got there. She was so creative. Only when she stopped writing and became robotic did they de-certify her."

My friend Wendy went to the doctor with a sore throat. During the appointment, she began to cry. The doctor decided she was clinically depressed and put her on Prozac. Prozac made her crazy. She was hospitalized, tranquillized, and ended up getting 43 electroshock treatments. As a result, she lost the entire memory of her life prior to the treatments.

After teaching herself, among other things, how to write again, Wendy has written a book about this. Her family and doctors are trying to suppress the book; they don't want anyone to know what they did to her.

Wendy says, "At one time, I thought I had freedom to study, to earn a wage, to have a family and friends, to travel the globe. But then -- it was all, completely taken away. Freedoms that I hadn't given a second thought to, were suddenly gone. In hospital, my glasses were taken away -- I couldn't see. They took my watch -- I lost every concept of time. My clothes, my books, my children. Everything."

Wendy says, "Even my capacity to think was taken, as my thoughts became fogged and blurred with the use of drugs and electricity. I lost the freedom to feel and to express -- I wasn't happy or sad, I didn't love or feel loved, I didn't cry or laugh or sing, or speak.

"With my memory destroyed," says Wendy, "the freedom to live with peace of mind and a sense of security and safety is not to be had."

Wendy survived the hospital, but hardly intact.

My friend Karen died in there.

My friend David died in there.

My friend Jim died in there.

My friend Therese died in there.

I thought for a long time that I died in there. But guess what? I survived. Ya missed me. Nyah-nyah.

Freedom is knowing that I am a real person, a good person. Freedom is knowing that it's okay to be "bad" sometimes. Freedom is the room to breathe, the room to expand, to relax.

Freedom is the right to breathe. I'm allowed to breathe the same air that people in suits breathe, because I'm free. I can be loud and full of power, even though I'm female, because I'm free.

Getting out of shackles, getting out of the little box called the Quiet Room, getting out of the bigger box called the hospital, getting out of the zombie haze the tranquillizers put me in -- these were sweet and precious achievements. Wherever I go, I am free to put on my coat, to walk out the door. Or to stay. The choice is mine. Having that choice, is freedom. I got out of the hospital by agreeing with everything they said about me. I've stayed out by denying it.

The system taught me that I was weak, that I was sick, that my brain was diseased. They taught me not to trust myself. They taught me that I would never be okay again. They taught me that, on my own, without them and their drugs, I did not have what I needed to survive. They taught me to fear them. They taught me to respect them. They taught me silence and shame. They taught me that I was not responsible for myself. They taught me hate.

Slowly but surely, I'm unlearning everything they taught me. Here is what I'm learning. I am learning that I am strong. That I am well. That my brain is healthy. I'm learning to trust myself. I'm learning that I'm okay a lot of the time. I have within me all the capacities I need for survival. I do not fear the system. I do not respect it. I am learning to be proud of who I am. I am learning to be responsible for myself. I am learning love. I am learning that my emotions are just emotions, not symptoms. I am learning that I'm not broken, and I don't need to be repaired. Freedom, from pharmaceutical poisons, from humiliation, from labeling, from loneliness, from self-loathing. Freedom, from psychosocial rehabilitation, from vocational rehabilitation, from supportive housing, from services, from "special needs," from those who are paid to care. Freedom, to be a person rather than a patient, to live in an apartment rather than a residential facility, to have a job rather than an employment program, to have friends rather than social programs. Freedom to take risks. To feel strongly. To have fun.

I've had more fun since I got locked up than I ever did before. Having had my freedom taken away is supposed to mean that I have to struggle extra hard to act really, really normal. But to this, I just say no. I accept my weirdness. My weirdness is me.

Before I got locked up, I was shy and quiet and hated to stand out. I wore ladies' clothes and tried to act just like everyone else. For a long time after I got out, it was worse than that. I just wanted to hide. I felt so inferior that I didn't want anyone to see me. I longed to trade lives with every person I saw, because everyone else was real, but I was just this blob of shame and fear.

But once I finally started getting over it, thanks to friends, and good luck, and the passage of much time, there was no looking back.

Now, I talk to myself in public, a lot. I practise tai chi at the bus stop. I laugh loudly, sing loudly, dance like mad. I jump into the ocean whenever it's warm enough, and sometimes when it's not, just for a thrill and to astonish the tourists. I feel free to be myself.

This doesn't mean I have fun all the time.

Much of the time I should have spent writing this talk I spent in bed, curled up in a little ball, sleeping as much as I could. Full of despair, sure I wasn't good enough. Sometimes I'd praise myself for taking a bath, or boiling some noodles, or actually getting out to the street to bum a cigarette. More often I'd curse myself for being so useless. When I had to be with people it was awful. I felt like I wasn't one of them. I couldn't make myself smile, relax, talk, listen.

Does this make me abnormal? And if I am, so what? Are normal people as happy as I am when I'm "up"? What is normal, anyway? That which, for some people, is imbalance, might just be balance for me.

I hate when I can't be social, when I can't be active, when I can't be useful. I hate when I doubt myself, when I'm lost. Yet, if I could give up my lows, at the expense of my highs? I wouldn't even think about it.

Part of my freedom is accepting my bad times. Slowly, I'm learning not to get upset with myself about getting upset. When I'm feeling extremely miserable and not getting things done, I tend to get mad at myself, which makes me even more miserable, which makes it even more impossible to get anything done, which makes me panic. Panic is the worst.

But I don't have to let unhappiness spiral into panic. I'm slowly learning to live with the fact that I feel really awful sometimes, and to know, at some level -- even while it's happening -- that it will pass. To be able to say to myself, okay, I feel horrible. I've felt this way before. That doesn't mean I'll always feel this way, or that I'm a bad person. The more I can realize this, the faster I can get back to where I want to be.

Another freeing thing has been to realize that feeling lousy -- even feeling really, really lousy -- is not the same as being crazy. When I get panicky, I feel like I'm going nuts. But I don't see things that aren't there or think I'm on another planet (although I've been there, too). Recognizing that can help a lot.

Sometimes it helps to remember that I'm not as weak as I feel. I know I can live through really scary stuff, because I have done so. The two things I'm most afraid of are isolation and humiliation. And this is the gift the mental health system gave me: I was subjected to isolation and humiliation such as I could never have imagined. Yet, I survived. So now, at least some of the time, I know I can be strong.

And sometimes what I need is to give in completely to my weakness. So what if I'm weak sometimes?

When I'm really unhappy and desperate, I make myself call someone. I've found friends, both people who are officially crazy and people who aren't, whose shoulders I can cry on, either in person, on the phone, or at least by e-mail. The best is sobbing in someone's arms like a little baby, till I'm all sobbed out.

What makes this okay for me is that it's mutual. My friends can cry on me, and I take care of them. The remarkable thing is, no matter how screwed up I get, if a friend is in worse shape and really needs me, I can just about always rise to the occasion and help out.

When I feel like I'm losing it, and I can't reach anyone, I write. Even if all I write is "I want to die," over and over again, eventually, it helps. Eventually, I look at those words on the paper and realize that I don't want to die, I want to feel better. Eventually I start writing about why I feel bad, and sometimes that helps me work through it. But always, what I need when I'm hurting is to let out the hurt; to express myself. Only then can I get free of the pain.

This is why I believe that what happens to us when we get locked up is about as powerful a barrier to freedom as anyone could possibly create. My experiences of being locked up happened in the late 1970s, but what was done to me still happens to so many of us. They grab us, strip us, put us in hospital gowns (open at the back), give us a shot in the butt, put us in restraints, lock us in seclusion cells -- and then, ignore us.

The people doing this are all very tense, and they don't try to reassure us or comfort us, or tell us what's going on. Certainly they don't ask what we want, or what's going on for us. If we appear to be out of control, it's assumed that we no longer have any human faculties, or any human feelings, either. Never mind if what they've just done to us, on top of what we were already going through, scares the living daylights out of us. Never mind if we scream for help. They still ignore us.

It doesn't have to be this way. Even in hospital.

My friend Barb has been locked up six times in the last three years. She was in the same condition each time: flippy and confused. Five of those times, she got the standard treatment: needle in the bum, locked cell. That was in the city.

One time, Barb was taken to a small, rural hospital. There were no psychiatrists -- just psychiatric nurses working with regular medical doctors. The nurses talked to Barb the whole time. They didn't give her a needle. They didn't lock her up. They stayed with her, and were kind. They laughed at her jokes.

She remembers, after several hours, saying to one nurse, "I really like you, but your husband's a jerk." After she'd gone on about this for a while, the nurse said, "You know, I don't have a husband." Barb suddenly realized that the person she thought she'd been talking to, wasn't the person she'd been talking to. She felt very tired. The nurse said, "Maybe you should get some sleep." And then she fluffed the pillows and tucked Barb in. Barb slept for 36 hours. When she woke up she was lucid, and they let her go. She told me that when she dies she'd like to leave a lot of money to that hospital.

And yet, the vast majority of hospital staff continue to grab us, shoot us up, tie us down and seclude us.

I find it appalling that professionals are paid to do this to people, and that they and the public assume they're following sensible medical procedures to help those who are supposed to be sick.

I believe that what is popularly known as a psychotic episode is a time of being overloaded with emotion. And when the mental health system becomes involved, they almost always react by trying to suppress the emotion. Yet this may be exactly the opposite of what's needed.

Virtually everything about the way staff treated me in hospital screwed me up. What saved me was the help I got from other patients, and the fact that I was able to help them. By showing each other compassion, by listening to each other, by having fun with each other, against all odds, despite the terrible place we were in, we were able to hang on, to remember that we were still alive.

Breaking rules was an important part of it. For instance, patients were not supposed to ever touch each other. I had a crush on a fellow patient, which turned out to be mutual. Another patient would stand guard for us at the door of the TV lounge, keeping a lookout for staff, and we'd neck in there. This was incredibly freeing for me. Through touch, through the physical expression of affection, through intimate contact with another human being, I found a part of myself I thought I'd lost forever. More than any other single thing, it was the energy and hope I got from that contact that gave me the desire to go on living, and the courage to end my relationship with psychiatry.

Since then, I've met countless other people who have been locked up, and I've continued to find that we can help liberate each other.

When I'm feeling like I always do everything wrong, I can call another crazy person who knows me, who will understand exactly what I'm talking about, and give me concrete examples of things I've done right. When I'm feeling terrified of the world, I can talk to someone else who's been terrified of the world, but who isn't right now, and they can free me from that terror.

The stories we tell ourselves, about ourselves, and about the world and our place in it, have a huge influence on how we feel and what we're capable of. When people who have been labeled mentally ill can talk to each other about these stories, without fear of being judged, the feedback we get, and give, can be enormously liberating.

I've had a lot of help through getting to know and play and work with people who have been oppressed in other ways as well. In 1984 I came out as a lesbian, and got involved with a bunch of amazing women and men who were gay liberation activists.

This was my first experience with people who were proud not to be normal. They accepted and celebrated many kinds of eccentricity, including mine. I found a place where I felt at home, where people were actively struggling against those who would like to keep them down.

I've also been lucky to meet wonderful people fighting against kinds of oppression I've never experienced myself. My friend Roseanna is Native Canadian and uses a wheelchair. When she was 17, she had an operation to correct a dangerous curvature of her spine. The doctors screwed up, and she ended up paralyzed from the waist down.

When I got to know her she was almost 40. She was a wheelchair athlete, had stronger arms than anyone I'd ever met, loved to dance in her chair, loved being alive, and was a passionate advocate for disabled people's rights. She once told me that, to her, the definition of empowerment was "learning to bite the hand that feeds you." Roseanna's courage and spirit blow me away. Getting to know her, was a big step towards my own freedom.

In 1986 I discovered the mad movement. I've been involved in a lot of stuff since then. I edited Phoenix Rising, a national magazine by and for former psychiatric inmates. I helped start a provincial organization called the Ontario Psychiatric Survivors' Alliance, which was responsible for the formation of many local groups. I presented two nationally broadcast radio programs about psychiatry. I wrote a book -- Call Me Crazy: Stories from the Mad Movement. I joined the fabulous Support Coalition International.

By far the best part of all this was the crazy people I got to meet. People I have so much in common with; people who affirm me in all the ways that I'm strange, and in all the ways that I'm just plain human. People who belong to a group that is laughed at, despised, and feared due to stereotypes that are grossly unfair and wrong. People I have so much love and respect for. Crazies are among the most courageous, compassionate, fun-loving, powerful, and truly free people I've ever met.

Most important to my freedom has been the realization that when we get together, we are dynamite. We are glorious.

At every major gathering of crazy people I've ever been to, something magical has happened. We were united and uplifted by our contact with each other. When I see how magnificent my comrades are, it fills me with wonder and hope. I feel like part of something strong and beautiful. Something that can't be kept down.

A few years ago I went to a consumer conference put on the by the West Coast Mental Health Network. I'd visited the Network's office several times. Often, a guy called Frank would be hanging around. Frank seemed to have had the life burned out of him. I never heard him speak. I never saw him smile. His eyes were dull, and he seemed barely aware of the people around him. His movements were very slow, except when his head, tongue or arms jerked with the convulsions of tardive dyskinesia, a neurological disease caused by psychiatric drugs.

On the second night of the conference, we had a bonfire outside. I went to join the people sitting around the fire, and there was Frank, part of the group. He was looking people in the eye, joining in the singing, and, best of all, he had a big smile on his face. Pure magic.

I think that some of us go crazy because we're very sensitive. Because we're full of love and trust, and that doesn't always work out for us. Because we have a deep passion for some cause or ideal or belief and are ridiculed or left out as a result. Because the people around us find us too intense, or too energetic, or too different from them in some other way.

When we come together and feel safe and open with each other, our sensitivity and love and trust, our passion and intensity and energy -- the very things that make us different -- can come forth, can be set free.

I believe that if we do enough of this, we can move mountains. We can make magic. And we can push past the things we don't have in common, to work with, and celebrate, what we do have in common.

Part of liberation is liberation from prejudice. Not just other people's prejudice against us, but our own prejudices. When I discovered antipsychiatry, I looked down on people who were still in the system. Now I know better. Among the friends I get my strength from are people who call themselves consumers, who see psychiatrists, sign themselves into the hospital when things get too rough, and willingly take medications. I respect their ways of dealing with life, and they respect mine.

Prescription drugs, illegal drugs, staying away from drugs, sex, celibacy, macrobiotic diet, McDonald's diet, religion, art, magic, music, literature, comic books, television, radio, nature, shopping malls, dance, song, stillness, meditation -- the tools of liberation are whatever gets us through to the next day, and they're different for different people, and for the same person at different times.

But some of the things that are done in the name of treatment seem to me so contrary to the principle of freedom that my freedom involves exposing them and fighting against them.

I want to be free, and I want everyone to be free, of the kind of thing I'm about to read to you, which is from my friend Suzanne's psychiatric records. Suzanne had been crying a lot and being rude to her roommates. One of the people she lived with was her brother's girlfriend. The girlfriend called the brother, who came and drove Suzanne to the hospital, where she was admitted against her will on the evening of May 25th, 1997. They put her in restraints right away, although she wasn't being violent. After a while they took the restraints off, but left her in a cell, with the door locked.

The records include some technical terms, which I'll explain in case you're not familiar with them. "Labile" means changeable, and refers to rapidly shifting moods. "Neuroleptics" are drugs that are also sometimes called major tranquillizers, phenothiazines or antipsychotics, and are usually prescribed for people labeled schizophrenic. These are the drugs that cause tardive dyskinesia. Loxapine is a neuroleptic. "Disinhibited" basically means unladylike. And "insight" refers to the extent to which the patient agrees with the psychiatrist's assessment that she or he is sick and needs to be hospitalized and drugged.

The first note is from 3 a.m., the night she was admitted.

Patient awake, manipulative, yelling, sarcastic, whining when wants are not met. Patient remains sobbing, yelling and nondirectable.

3:30 a.m. Patient labile, from increased agitation to crying and then calm. Patient was yelling, swearing and agitated, because she is being locked up in a room. Nondirectable at this time. Ativan 3 milligrams given, intramuscular. Patient cooperative with injection.

4:10. Remains awake. Labile -- whistling and singing -- crying. Agitated, angry.

9:45. Superficially pleasant upon awakening. Had her breakfast, then taken out for shower. Easily directed.

11:50. Patient superficially appropriate but suspicious, sarcastic when asked questions. Guarded, hostile, irritable, reluctant to disclose relevant information. Not clearly delusional or thought disordered, but abruptly terminates interviews and pulls blanket over head. Zero insight.

May 27. 11:15 p.m. Patient awake, knocking on the door, shouting and swearing and wants the door to be opened. Loxapine intramuscular and Ativan intramuscular given, to help settle patient. Patient didn't resist and the injections were given in the presence of 3 male staff members.

May 30. 2:30 a.m. Extremely sarcastic, argumentative, not following direction, labile.

2:45. Loxapine intramuscular and Ativan intramuscular given, with emergency team present.

6:30 p.m. Needed to be secluded temporarily as she has not been responding to limit-setting or redirection given.

Supervisor's note: She is not clearly thought-form disordered nor delusional, unless she is covering paranoid beliefs.

Impression: Presumed bipolar affective disorder.

Plan: Increase neuroleptics.

By June 4th, the medications are starting to do their work:

4 p.m. Unstable on her legs. Difficulty getting up to standing position.

June 5. 2:30 p.m. Continues to be settled in behaviour. Mildly intrusive at the nursing station. Remains disorganized and had some difficulty finding her room.

Supervisor's note: Continues to be a management problem -- not sleeping, disorganized, disinhibited and extremely irritable. Was so disorganized last evening, required transfer to seclusion.

June 6. 7:45 a.m. Sedated -- groggy in appearance. Eye contact poor. Speech slurred, although spoke at length as to reasons she should not be hospitalized. Cooperative with morning medications. Nursed with door open, no management difficulties.

By June 7th, thanks to plenty of Loxapine, management issues are no longer the problem.

10:30 a.m. Patient disorganized, needing assistance to do shirt buttons and to tie her pants. Patient unsteady on her feet; once when trying to sit in a chair she misjudged and slipped off of it, onto the floor. I can be as free as I want in my own life, but while my friends and others are being tortured and humiliated, my personal freedom is not good enough.

I want to make the world safe for people to go crazy in, if going crazy is what they need to do. If everyone weren't so terrified of madness, if we looked at it as a breakthrough, rather than a breakdown, if we put in place smart, compassionate ways of helping people get through it and out the other side, madness itself could be liberating.

And if we could teach the so-called normal people to relax a little and give some room, and some credit, to the crazy, free being inside them, maybe they could have a lot more fun, and stop giving the rest of us such a hard time.