Will Hall Speakout

Submitted by admin on Wed, 02/21/2007 - 02:00

From the Forbes.com website philanthropic focus on Freedom Center, August 2008:


Will Hall
Profession: Graduate student
Cause: Treatment alternatives for mental illness

Why I was moved to support this cause:

Since I was a child I've struggled with extreme emotions, voices and powerful out of body experiences. I remember falling to the ground once in third grade, writhing in agony because I believed something was grabbing my back. I saw cartoons projected on the ceiling, and my fear was sometimes so strong I fell mute. I often hid away, alone, overwhelmed and unable to describe what was going on.

At age 26, I hit a breaking point and wandered the streets of San Francisco all night hearing angry voices telling me to kill myself. I ended up on a locked psychiatric ward. For the next year, I was in and out of hospitals and homeless shelters.

My diagnosis was schizoaffective schizophrenia, and the treatment was powerful anti-psychotic medications. What the doctors had to offer didn't help me, however. I left the hospital with more problems than I had going in, and I had to cope with the trauma of restraints, seclusion, plus a stigmatizing label that offered little hope for the future.

With nowhere to turn, I started to search for an answer on my own. In 2000, some friends in the Northampton, Mass., area let me stay with them, and I got a job in a local convenience store. Then I worked in a bookstore. The daily routine of a job, getting away from the memories in San Francisco, the small town tempo--it all helped. Step by step, over these difficult years, I learned a different way of responding to my madness.

I learned about nutrition and changed my diet. I took classes in yoga and meditation and began to see an acupuncturist. I watched for early warning signs of problems and began to consider the spiritual aspects of what I was going through, listening to the voices I heard and exploring their meaning. At one point back in San Francisco, for example, I heard a loud voice telling me I had to do yoga or I would die. It was frightening, but I realized it was like the voice of an angry parent or guardian looking out for me. So that voice is why I began to practice yoga.

I might be different than most people around me, but being different also means being creative and sensitive. I stopped seeing myself as a broken person with no chance for recovery. Most importantly, I reached out to other people who had also been diagnosed as mentally ill, and we began supporting each other in discovering our own pathways to healing. For too long I had been trying to do this all on my own.

The upshot is, as I grew stronger and healthier, I was inspired to dedicate myself to helping others make it through the ordeal I had survived. Though many people find good support from doctors and medications, growing numbers around the world are calling for alternatives to the mainstream "one size fits all" approach to mental health.

What I am personally doing to support this cause:

In 2000, I met Oryx Cohen, a University of Massachusetts graduate student who had suffered similarly to me. We hit it off. We were both looking for treatment alternatives, and we wanted to meet others like us. So in 2001, we co-founded the Freedom Center in Northampton, starting with a public library computer, a free e-mail account, and one support meeting a month held in a local church. The meetings took off. People came in to share their amazing stories.
Check out the Freedom Center by watching this video

Today we've grown to a weekly acupuncture clinic, two yoga classes, a writing group, meditation group and two peer support groups. Thousands have been helped by the Freedom Center. We're trying to reach people not helped by traditional care, people looking for alternatives to medication and diagnostic labels.

We try and give people space to find their own pathway and treatments and let them explore, with support, a variety of “wellness resources.” That might include medications or it might not. We do make people aware of the downside of the drugs, but we let them choose how they want to proceed.

Last September, for example, the Freedom Center and the New York-based Icarus Project jointly published a Harm Reduction Guide To Coming Off Psychiatric Drugs. There are a lot of risks coming off psychiatric drugs, and if someone is finding it too intense, we often say, “Why don’t you consider going back on the medication and focus for the moment on finding yourself a stable housing situation. Or feeding yourself better.”

The Freedom Center does a lot of educational work and public events, and we have been invited to talk in places like California, Alaska, Utah, Ireland and Europe. We had a “Bed Push” last summer, where we rolled a hospital bed around town to call for more choice and compassion in hospital care. I also founded “Madness Radio,” a community FM radio show now heard everywhere via the Internet. So the Freedom Center is growing from a local service to a national voice for mental health alternatives.

Hard to know where this will all lead in the future. I myself am now in Portland, Ore., completing a Masters Degree in psychology at the Process Work Institute. I miss my friends in Northampton.

What you can do:

Experiences that get called mental illness are shrouded in fear and misunderstanding. Take the time to listen without judgment or preconception to people diagnosed with mental illness and have the courage to speak up if you've ever had a brush with madness yourself.

I invite you to learn about alternative and holistic approaches and to take a stand for greater choice and options in treatments and care. And, if you are in Massachusetts, please come by and visit one of our acupuncture sessions or yoga classes.

Speech from the June 16, 2004 Mad In America: Missing Voices In Mental Health Care panel at Smith College:

Thanks, it's an honor to be here. In a sense it's taken me twelve years to get to this panel, because it's taken me this long to be personally able to talk in public a little bit about some of my story. So thanks for this opportunity.

My first experience with psychiatry was taking Prozac at age 24. At first it was like the best cup of coffee I had ever had, I was being very productive at work, getting up early, and really feeling “better than well.” But then I had a manic reaction to the Prozac. I was suddenly acting very differently at work, wearing weird clothes and getting into big arguments with my co-workers. It was the first time anything like this had ever happened to me, and it was absolutely terrifying. No doctor warned me, and nobody got me off the Prozac when the manic reaction started. I ended up losing a long term job as a result of this drug side effect.

2 years after that, I ended up in the locked unit of a public psychiatric ward in San Francisco. It was like a prison. I was told I was a danger to myself and that it was for my own good, but like so many people it was really being in the wrong place at the wrong time. I begged them not to lock me up, because I didn't want to lose my two jobs. I kept saying Please let me go so I can go to work, please, I can make a no harm contract, I don't want to miss work. But I ended up losing those jobs.

That began a year long stay in the public mental health system. I needed help, but instead I was treated like a disobedient child with a broken brain, punished and controlled, including more than two months in a locked unit. I went from being a human being to being a mental patient. I was put in restraints. After being restrained I had nightmares that I was being raped, and I still have strong trauma reactions to anything that reminds me of that experience. I was put in an isolation cell, threatened with being strip-searched, given more than a dozen different drugs, and subjected to patronizing group therapy.

I spent several months on a very powerful psychiatric drug called Navane, used to treat schizophrenia. It completely changed my personality and denied me the most basic sense of who I was; it made me stupider, slower, fatter, and also because of the side effects, at times more desperate and suicidal. At one residential facility I was at, a man had killed himself right before I arrived. A patient who was his friend told me why: he was having severe side effects from his meds and no one was listening to him. The meds were why he jumped off the roof and killed himself, not mental illness.

I have photos of that time, and the look in my eyes is totally different, not me, a different person. I was basically a zombie, but I was being docile so they considered it recovery. Today I have some lingering side effects from the Navane and other drugs I took, including twitching in my body, memory disturbances, and worsened panic. There could also be other long term damage and side effects that I may never be able to sort out and recognize.

My father is an electroshock survivor from hospitalizations in the 40s and 50s; he was tortured by psychiatry at the request of my grandfather as a form of punishment for acting out as an adolescent. My father's emotional scars from this abuse directly affected me and the rest of my family, because he never got adequate treatment and carried around severe PTSD all during my childhood. Of course, when my psychiatrists where I was locked up found out this about me, they used it to try to convince me my problems were genetic brain malfunctions correctable by medications. Not once did they ever ask me about my own childhood experiences of trauma. Only later did I learn that there is no actual basis for the genes/brain disorder claim, that it is only psychiatric dogma.

After more than two months locked up they said they had tried everything, and that when nothing else helps, electroshock is needed. I desperately wanted to get better, so I began to consider agreeing to electroshock, which they told me was completely safe and effective and had no negative side effects.

But then I got very lucky. I was there against my will because I was supposed to be harmful, but a social worker came and suddenly announced that the funding that was paying for me to be there had run out, so they were releasing me immediately. So I went from too sick to release to out on the streets overnight. I ended up in a homeless shelter that was dangerous and run down, but being out of the locked ward instantly lifted my depression.

The humiliation of being labeled schizophrenic threatened to become a self-fulfilling prophecy. I was socialized into being a mental patient. I was encouraged to see myself as a broken invalid, and instead of my strengths I focused on my weaknesses and vulnerabilities as evidence of being a defective human being. Everything became a symptom. I remember telling my hospital psychiatrist that I was reading existentialism and Marxist philosophy, and later I found out he had put this down in my permanent medical record. They also told me that my feelings about being bisexual were part of my illness.

Today I live with ongoing and very realistic fear of misunderstanding and stigma, and I have to hide my psych history from most people in my life. Once you've revealed your psychiatric history to someone and then had them treat you as less than human for it, you learn to keep your history hidden from most people. This means a life in the shadows, a second class citizenship, a sense of not being part of the human community.

I have stayed out of the hospital for more than 10 years. I do a lot of things to promote my own mental health, but I learned absolutely none of it in the mental health system. Not a SINGLE THING. The mental health system was completely useless to my mental health. Today I do yoga, I meditate, I do sports, I volunteer in the community, I see a homeopathic doctor and I am very careful about my nutrition. I have to avoid milk, caffeine, and sugar, which directly cause my anxiety and symptoms to worsen. Of course, in the hospital every meal included milk, caffeine, and sugar.

It took me ten years before I could start researching and doing activism on these issues, without being overcome with fear and traumatic memories. Today I still can be overwhelmed when I try to read books about the mental health system.

When I moved to Northampton I was very fortunate to meet Oryx Cohen, a psychiatric abuse survivor who had been diagnosed as Bipolar. In this area there was no group run by and for people with severe mental illness labels themselves -- everything was run by the mental health system. No one was protesting psychiatric abuse, it was as if it didn't exist. So three years ago we co-founded the Freedom Center together to break the silence.

Today we have a free weekly yoga class, a weekly support group, a writing group, we do advocacy for people facing abuses and have regular community events – you can find out more by checking out our website www.freedom-center.org. You can also read people's stories on our Speak Out pages and on the Oral Histories page of our website, including stories of other people recovering without medication.

We learned that the protection and advocacy system, the human rights officers, the DMH complaints system – it might be better than it was twenty years ago, but the system is still failing to protect people's basic rights. We've advocated around full blown medical malpractice, where staff are ignoring major side effects and the client ends up in a coma or with tardive dyskinesia brain damage, and nothing happens when complaints are filed.

So we do what we can. We have helped people fight forced drugging, helped people avoid hospitalization, helped work for phone access, told people about drug side effects their doctors didn't, helped people locked up get basic rights like access to dental care, organized against drug overmedication, connected people with low-cost alternative health care, and done whatever we could to help and advocate for people. We've done all this as volunteers and with a shoestring budget. We also work with mental health staff and professionals. We welcome them to join us as allies and supporters, because we understand that staff are in this profession because they care about people, and that often they are trapped in institutions they want to change.

Freedom Center's work is controversial, and people sometimes stereotype us as being anti-drugs. We are pro-self determination. We don't tell people what to do or tell people to stop taking drugs. Many people who are part of the Freedom Center take psychiatric medications. We help people find out for themselves what works best for them, because only you can determine for yourself what helps you. We help people get off drugs slowly and carefully, but only if that is what they want to do. And we call for accurate, honest information about psychiatric drugs so people can make a truly informed choice. Right now the system is not giving people accurate information about drugs or about mental illness.

We also want to make sure people have access to alternatives. The whole system is focused on drugging people and downplaying how harmful drugs can be, and there are few real alternatives offered. Right now the mental health system is playing custodian to people in our community who are so medicated they are visibly stiff and blunted – you see some of these folks walking down the street year after year. We need to be honest that medicating people into submission is a failure. We need more funding for social supports, for therapy, and for alternative health care choices.

I recently saw a video from England, and I was completely surprised to see a public mental health client meet with a body worker who was giving her regular massages as part of her treatment. People say we're somehow being unrealistic to expect that people in mental health crises should have access to alternative health care, such as massage and bodywork – but they are in fact already doing it in England. And I recently learned that homeopathy is mainstream medicine in Europe -- you can get insurance reimbursement for it and the public health systems provide it. I have to pay for homeopathy out of my own pocket, and I can't always afford to get all the care I need because my insurance doesn't cover it. There are also countries that use a lot less drugs than we do and have much higher recovery rates.

Freedom Center is also opposed to forced treatment. We have had involuntary hospitalization, restraints, seclusion, and forced drugging happen to us, and we know for ourselves how violent and damaging force can be. There are alternatives, and we need to start funding them and using them. Voluntary programs work better, cost less, and don't run the risk of traumatizing people, which drives them away from services. Forced treatment is based on denying people equal rights under the law. Everyone in society has the right to refuse medical treatment, even if it is going to harm them to do so, such as cancer patients who can refuse treatment even if it risks their life. But psychiatric patients are routinely denied this basic right.

So I just want to close by encouraging everyone to read Bob's powerful book Mad In America. I would also urge people to read the National Council on Disability 2000 Report From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves, which Judi was very much involved in creating and is available for free through our website. And for those of you who are students at Smith College School of Social Work, I think it is important that you work to include Mad In America and the NCD Report as part of the required reading in your curriculum, because we need to include the missing voices of psychiatric abuse survivors.

Statement for Paula Caplan's campaign for Congressional Hearings on the harmful impact of psychiatric diagnoses:

"My name is Wilton Hall and I am a founder and leading organizer with the Freedom Center, a volunter self-help and advocacy group run by and for people with severe mental illness diagnoses based in Northampton MA. In 1992 I received a diagnosis of schizoaffective disorder schizophrenia while in a locked psychiatric ward. I was certainly going through a great deal of pain and extreme states of consciousness at that time. However, my experience with the mental health system and its treatments, many of them administered to me without my consent and with no other options, was negative and harmful. My diagnosis became part of the problem, not the solution.

After being in the system for years I was left worse off than when I went into it. Being diagnosed as schizophrenic was deeply humiliating, taught me to distrust my innermost feelings and thoughts, and encouraged me to surrender my autonomy and self reliance to others. It pushed me deeper into isolation and seperation from the rest of humanity. My diagnostic label promoted despair and threatened to become a self-fulfilling prophecy.

It was only when I stopped believing in my schizophrenia diagnosis that I began to get better. By conducting research and educating myself to the facts about psychiatric diagnosis, and learning that these labels are subjective and political and not based on any solid science, I was able to see through what had become an interpretive prison. I stopped believing I should never have children because I have bad genes. I stopped believing I should never trust my emotions and thoughts because they are always corrupted by illness. I stopped believing that I had chemical imbalances that only medication could help. I stopped doubting my spirituality, my creativity, and my sensitivity. I stopped believing recovery was impossible. I started to respect myself and my differences and uniqueness, rather than seeing myself as a disease to be cured or a problem to be solved.

I was shocked to learn the extent of misinformatin and manipulation that surrounds psychiatric diagnosis. It was eye- opening for me to discover that the acclaimed Ron Howard film "A Beautiful Mind" willfully misled viewers as to the role of psychiatric medication in John Nash's recovery. Nash did not, as the film claimed, benefit from the newer classes of drugs. Quite the opposite; Nash has stated that drugs risked destroying his creativity, and his recovery took place without them. By accepting myths and misinformation associated with diagnoses like schizophrenia, how many beautiful minds might not be as lucky as Nash? What would have happened to me if I hadn't questioned my diagnosis and the drugs I was told to take because of it?

I certainly am not saying that my suffering was a myth or that I do not have painful experiences that are far outside the mainstream of what is considered normal. And I am not denying that others have found it helpful to believe they have an illness, just as some people might find it helpful to believe their alcoholism is a disease. However, when they imposed a schizophrenia diagnosis on me, they prevented me from exploring my experience for myself and learning how to understand and heal myself in ways that work best for me. Diagnosis denied me the rich possibilities of seeing the creative, spiritual, and culturally-different meaning in who I am and what I go through. Diagnosis as schizophrenic denied me an understanding of the role of emotional and physical violence in my condition, let the mental health system and its mistreatment of me off the hook, and distracted me from seeing the role poverty, nutrition, and social and cultural factors played in the crisis that led me to be hospitalized. Diagnosis as schizophrenic steered me away from the complementary and holistic medicine that eventually became so central to my recovery.

Psychiatric diagnoses like schizophrenia alway risk harming people, always risk becoming a self-fulfilling prophecy, always deny people the right to define and understand themselves for themselves, always mislead people about the facts of what is truly known and not known about mental illness, always unfairly promote narrow drug treatments against holistic alternatives, and always impose an interpretation on others based on subservience to power. Psychiatric diagnoses perpetuate a long legacy of mistreatment of the mentally ill, who should be embraced as humans deserving of full dignity, not labeled as broken and different.

I therefore believe it is an urgent necessity to clearly and unequivocally expose the true nature of psychiatric diagnostic labels and the risks associated with imposing them on people, and to stop perpetuating the myths and misinformation that have become the foundation of biomedical psychiatry. It is essential that we end the cynical and manipulative trend of psychiatric diagnosis as a vehicle for corporate marketing, a trend which far surpasses any other country in the world and which has now shamefully reached our children in growing numbers.

I believe that our system of helping people in extreme states of consciousness and severe suffering can and should dispense with pseudo-scientific psychiatric diagnoses. I believe we can find ways to care for people without harming them.

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