RECOMMENDED Viewing: Dina Tyler's Story

[ Music ]

>> So, good morning.

Welcome to the Bay Area Lecture Series.

I just want to do a quick reminder,
the goals of this series are twofold.

One is to highlight local clinicians,
researchers, advocates, and policy makers,

but also, just as importantly, to
explore how issues of structural bias

and social justice cut across systems of care.

It is my absolute pleasure to
introduce to you Dina Tyler.

Dina is a founding member of
the Oakland Prevention Recovery

and Early Psychosis PREP team.

That's how I met her.

She's also a co-founder of the Bay Area Mandala
Project and the Bay Area Hearing Voices Network.

When I first met Dina at Oakland PREP, she
immediately stood out to me for her enthusiasm

and positive regard for all but more
importantly, her ability to smoothly move

between intersubjective, dyadic perspectives and
logical incisive arguments for system change.

The only other thing I will say in introduction
is just to remind us, pertinent to the topic

of this talk, that despite the best
data we have, recovery rates for people

with schizophrenia have not
improved since the 1950s.

So welcome, Dina.

I look forward to what you have to say.

Thank you.

[ Applause ]

>> Hi everyone, and thank you so
much, Damian and Gina for inviting me.

It's really an honor, and I appreciate
you, Damian, for your open mindedness

and your dedication to improving
treatment for people.

I think I am the first person with lived
experience to speak at the UCSF Grand Rounds.

It's an honor, if not a bit uncomfortable,
because of the big question mark:

can a psych survivor like me have an
impact on a room full of psychiatrists,

especially around the topic
of critical psychiatry?

I struggled with whether I should
try to fit myself into your world

and the grand rounds talks that you're used to.

But that's not really the point here.

It's to try to bring you into
my world, into my perspective.

And even if I don't, or I
end up looking like the fool,

I am grateful for the opportunity to try.

So, I'm going to take about 55 minutes to
present and then give some time for questions.

I'm also happy for any follow up questions.

You can just go to dinatyler.com
and email me there.

It's not my first time speaking
at a ground rounds.

The first time, I was actually a patient at
the UCSD outpatient mental health clinic,

the Gifford Clinic, and I was trying to demand
that my treatment team remove my diagnoses.

I was very vocal about my disagreement, and
so they said I could come to grand rounds

and plead my case, but I'll
circle back to this later.

I have been given six different
diagnoses in my life.

I have been hospitalized involuntarily.

I have been prescribed so many different
psychiatric drugs, and at one point,

was even on a cocktail of
seven meds, five psych drugs,

plus two others for the side
effects caused by the other five.

When the doctors started discussing whether I
had schizophrenia or schizoaffective disorder,

I started to see things were not
headed in a good direction for my life,

and I decided to make my exit
from the mental health system.

I still have experiences that would
be labeled as psychosis, but today,

I am a counselor with individual and
family clients from around the world.

I've also consulted with psychiatrists
and psychologists, have done trainings

for clinicians, nurses, and doctors, as
well as working in San Francisco, Alameda,

and San Mateo counties, developing

and supervising a few different
peer specialist programs.

I don't take medication and haven't
taken medication for 19 years.

I graduated UC Berkeley with highest honors.

I won the Peer Specialist
of the Year Award in 2015

from the National Council for Behavioral Health.

I've been working with the MAD Movement
of psychiatric survivor advocates

and critical psychiatry movements
for more than 15 years,

and was a founder of Bay Area Hearing Voices,
Bay Area Mandala Project, organizer of Mad Camp,

and these are just a few of the
projects I have been involved in.

I also offer breathwork sessions and retreats
for providers and family members who want

to better understand how to
hold space for psychosis.

I have been on all sides
of the psychiatric system,

and am friends with so many
people who work in this system.

And I personally know how many
caring, incredible people have taken

out huge student loans because they truly want
to help people with -- through this profession.

My talk today is pointing out the
problems with the design, not the people.

I was and still would be noncompliant.

I've spent my life creating
compassionate alternatives

to the traditional mental health system
because my hospitalization was really bad.

I would never, ever want to seek help
in a psychiatric hospital ever again.

I've seen over and over that what
happened to me happens again and again

and is completely normal and common.

Even today, right now, there
are people being traumatized

in psychiatric hospitals
right here in the Bay Area.

I know because I've talked with many patients,
families, and advocates in the area for years.

So, this isn't just a Dina Tyler story.

This isn't just a plea from my perspective.

This is a story of many, many patients and
the perspective of an international movement

of patients, families, clinicians,
researchers, legal advocates,

and disability rights activists, this
is a story of normalized violence

and human rights violations and a plea

for how we can all choose to
no longer participate in it.

While I will not go into graphic
detail, I will be addressing some things

in my talk today about sexual
assault and trauma.

I realize not everyone chooses to hear
things that could be potentially triggering,

and you do have a choice here
to leave or listen to this talk

at a future time when you feel ready.

However, I also want to invite all those
that are in the mental health profession

to deeply work on what triggers
you in order to be the ones

who can really hold hearing the traumatic
experiences of those you encounter.

If something I talk about today is
upsetting to you, please take extra attention

to nurture yourself and hold
that part of you with a lot

of compassion for the wound that is there.

To understand my perspective, there
are a few things about my life

that are important to see the bigger picture.

And while there are so many parts of my story
to share, and you can find more on my website

or just email me to ask, I
specifically want to focus today

on what might make someone
noncompliant or reluctant

to seek traditional mental health services,
and I will use my own story as an example.

I've heard voices and seen visions
ever since I was a young child.

A lot of times the voices are a
relentless chatter of conversations,

like being in the middle of a busy restaurant,
I've had a few voices that terrify me

with their criticisms and yelling, but I've
also had voices that were super helpful

and give me reminders and guidance and
truly helped me get to where I am today.

In school, sometimes the voices
would help me out on tests,

but they also made it hard to concentrate.

I didn't tell any teachers about hearing voices

because back then I didn't
think it was abnormal.

But since I had issues with
concentration in high school,

I was diagnosed with attention deficit
disorder and prescribed stimulants.

The stimulants affected my sleep and
appetite, where I felt I needed less of both.

I began having a difficult time
during my first two years of college

and started having panic
attacks and was crying a lot.

I was diagnosed with severe depression
and anxiety and started on a journey

of different benzodiazepines and
antidepressants, while maintained on Adderall.

Right before I started my third year as
an undergraduate transfer to UC Berkeley,

while couch surfing and trying
to find my own apartment,

I was drugged with Rohypnol and raped.

I did not have anyone I could process this with,

and instead tried to bury it while I
started my rigorous academic schedule.

By my second semester, I was lost in
disturbing and overwhelming voices

and would slip into periods of dissociation.

I was seeing visions of an echo apocalyptic
future world where inflation was out of control.

Gas prices were soaring.

People couldn't travel very far by car, and
so motorcycles were economically valuable.

In this vision, I'm riding on the
back of the motorcycle, really scared,

while people are trying to
pull me off and steal the bike.

I was horrified by the look in their eyes when
a human has lost their humanity to the point

that they care more about
an object than a human life.

This vision deeply affected me.

I wasn't bathing, eating, and
was falling behind in my classes.

Even though I had never learned how
to ride a bicycle, I bought a Vespa.

It didn't make much sense to my parents.

And my mom drove up from San Diego and had
me withdraw from school on medical leave.

I was diagnosed with psychosis NOS, not
otherwise specified, and put on antipsychotics.

I returned home to San Diego, and my parents
put me in a partial hospitalization program.

In the year leading up to this, I had felt
there would be an attack in New York on Y2K

and that I needed to convince everyone I knew
to stay out of New York on New Year's Eve.

This was fueled by Nostradamus'
predictions I encountered as a child.

I was convinced that, in order to avoid the
horrific future I had seen in my visions,

George Bush could not be elected in
the year 2000, and I instead needed

to get everyone I knew to vote for Nader.

Y2K came and went, and there was no attack.

In the months that followed,
I adjusted to the idea

that I was wrong, but I also felt a bit baffled.

I was so wrong that now I was actually
seen as psychotic, seriously mentally ill.

I lost countless friends because of stigma, and
my family members all treated me differently.

Embarrassed, ashamed, and kind of hopeless,
I decided my antidepressant, Effexor,

wasn't helping me feel better,
so I stopped at cold turkey.

Less than two weeks later, I started
feeling better, a whole lot better.

I was having vivid dreams, and dreamt
about getting tattoos on my arms,

and woke up the next day and got them.

I was feeling inspired and hopeful and creative.

It also became harder to fall asleep.

The withdrawal of Effexor triggered
insomnia, and I was up for five days straight.

On that fifth day of not sleeping,
I had a profound experience.

I discovered the meaning of life.

I joined philosophers, poets,
psychologists, writers, thinkers from history

in asking the big questions of existence and
coming up with an answer that made sense to me.

Like an Old Testament prophet, I was
speaking to what I called celestial beings

and being given messages
from a higher consciousness.

These beings were watching what was
happening amongst humans on this planet,

and they had some very important things about
our existence they wanted me to communicate.

Like poets, philosophers, prophets,
and religious leaders throughout time,

I passionately followed this destiny.

So, on the fifth day without sleep,
I started calling everyone I knew

and told them I had discovered
the meaning of life.

I was sharing what I thought was the very
clear pathway for humans that I was given.

Part of that vision was that I would become the
first female president of the United States,

where in the future, I would run against
Chelsea Clinton, but that I would win.

Now, this was back in the year 2000, way
before Hillary ever ran for president,

and to everyone else, I was just this shy,
awkward, goth girl who worked at a record store.

I was nowhere near the person you
see standing before you today.

I had always been an extremely quiet person,
not a hint of the ideal presidential candidate,

but suddenly I was animated, expressive,
broke out of my shell, and was saying a lot.

So, to those around me, I was not acting normal.

I just shifted out of my familiar personality
and started acting in a really animated way.

Today, it's actually quite normal
for me to act in an animated

and intensely passionate way at times.

But back then, however, if I had been
surrounded by people who can help guide me

through the withdrawal and teach
me how to prioritize getting sleep,

by people who are curious instead of afraid,
I may have been able to get through this

without the need for hospitalization.

That maybe If I am the people
around me had been --

could have been helped to see that there was
some significance in what I was proclaiming,

that I could actually do something meaningful
in the world, something with impact,

something with power to affect change.

Was that so crazy, or did it come true?

I had what was labeled as a manic
episode, more evidence for my illness.

Yes, I have been up for five days without sleep.

I guarantee you, anyone in this room who stays
up long enough will go psychotic and manic.

It is not an illness.

It is a stress response.

Maybe they should have asked
me why I couldn't sleep.

Maybe they should have helped
me understand withdrawal effects

and learn how to take better care of my sleep.

So, I had this vision.

It would have been incredible if I had been
supported, but instead, it became the evidence

that I was ill and needed to be hospitalized.

I wasn't suicidal.

I wasn't starting fires.

I wasn't threatening to kill anyone.

I wasn't committing crimes.

I got really excited about something.

I figured out.

That was it.

My mom convinced me to go to an inpatient unit,

saying that it would be a safe
place for me to get some sleep.

After so many days without sleep, I
knew I needed it, and so I agreed to go.

I was diagnosed with bipolar and psychosis NOS.

They wanted to add a mood
stabilizer and another antipsychotic.

I initially resisted.

I didn't want any more medications.

I was tired of so many medications,
tired of the trial and error.

I didn't like how they made me feel.

They certainly hadn't helped improve my life.

I only kept getting more diagnoses, higher
dosages, larger cocktails of psychiatric drugs.

Even though I went in voluntarily,
they changed it to involuntary.

Within the first few days of inpatient,

I started to see how little things fit an
overall pattern of dehumanizing treatment.

I was denied access to my journal and a
pencil until I agreed to take the medications.

I begged for my hair products that helped
me avoid matted hair, but was told no.

When I complained that another patient was
stealing my underwear, and I didn't feel safe

because I couldn't lock my door,
I was told to hide them better.

I was told that they couldn't give me
the AMD ointment I was instructed to use

on my fresh tattoos so that
they'd heal properly.

Their reason: I might try
to drink it and kill myself.

I thought I could reason with
the staff to listen to me.

Turned out I couldn't.

There was a 40 year-old woman
who took pity on me.

She had been hospitalized many
times and showed me the ropes.

She helped me understand what
to do and what not to do.

Just keep my head down.

Don't try to argue with the staff.

That only makes it worse.

Just take the meds and try to make the best
out of your time there until they let you go.

I learned that if you take the medication,
they are more likely to let you go.

I learned to submit.

I gained 35 pounds in three weeks
on the new combination of meds.

People visited me less and less.

I tried to just surrender to my circumstances.

Since there was not much to occupy myself
with, just the loud TV in the common room,

another patient in his 50s told me he could
show me some of the handouts he had gotten

when he was in an outpatient program and to
come to his room and he will give them to me.

I naively followed him into his room,
and he immediately forced himself on me.

And because I was so heavily medicated,
because I had a history of dissociating,

I wanted to scream and fight
back, but I couldn't.

It seemed like forever before the staff
finally came in and pulled him off me.

But the staff were really rough with me.

They looked mad, and they
violently threw me into my room.

I didn't understand.

I thought they were saving me,
but they looked disappointed.

They told me what happened was a symptom
of my bipolar, that I was hypersexual.

How could they not see that I
didn't want this to happen to me?

That night, that man was
not removed from the floor.

His room was right across the hallway from mine.

I was scared that he could
come into my room at any time.

I couldn't lock my door, so I didn't sleep at
all that night, and came up with a plan of how

to get transferred off that ward.

The next morning, I told the
staff that I tried to kill myself.

They asked me how, and I quickly
had to come up with an answer.

I lied and said the bed sheets.

They took me off that ward and onto the
suicide watch ward, but before I could enter --

but before I could enter, they
said they had to do a strip search

to make sure I didn't have anything on
me that could be used to kill myself.

I had just been raped, and now
they want to strip search me.

I wanted to yell, "I have been here three weeks.

What could I possibly have on me that
you don't already know that I have?

All I have are these pajamas."

But I couldn't yell at them.

I had to submit.

I knew there is no way I am
actually going to get helped there.

I wanted to get out.

Three days later, I was told that my insurance
had run out and I was being discharged.

To say the very least, that I had been
broken, or, more aptly, heartbroken,

that I couldn't trust the people that were
supposed to help me, what kind of training

or clinical gaze makes people lose
their humanity or even common sense,

so much that they witness a rape and think I
am so out of my mind that I somehow wanted this

to happen to me, that a 22 year-old was
trying to seduce a male patient in his 50s

in a psychiatric hospital
while heavily medicated?

After experiencing such dehumanizing treatment,
there is no amount of convincing or coercion

that could ever make me want to go back
voluntarily to a psychiatric hospital.

For years, I felt the threat from
family members and treatment providers

that I would be rehospitalized if I came off my
medications or for any other number of reasons.

Since there are so many of us who would
never want to be involuntarily hospitalized,

I have spent my life trying to create
alternatives to any forced treatment.

There is a problem with the
design of what we call care.

We always need to look at the design when
we're not getting the outcomes we want,

and refrain from blaming it on the
patient when they refuse our services.

We must consider the possibility of iatrogenic
harm, harm that is caused by the treatment.

My refusal to seek treatment
was called a lack of insight.

This is an incredibly dangerous
and offensive clinical trope

that has been gaining traction
over the last decade.

There is even an unproven myth, often
presented as fact, similar to the rise and fall

of the chemical imbalance theory, called
anosognosia, something that is studied

in brain injuries that is being
falsely attributed to mental illness,

that someone lacks the insight into
their condition, that they are so ill

that they do not know that they are ill,
and that this is used as an explanation

for why people refuse medications
and conventional treatments.

This idea of lack of insight
is dangerous because it assumes

that people do not know what is best
for them and that they can be ignored

and another person gets to decide
what is best for that person.

Anosognosia is a loophole, a trapdoor,
an exception that lets in one group

of powerful people to step on
a group of vulnerable people.

What is it truly?

The idea that a person has a lack
of insight arises between two people

who are having a disagreement,
two different perspectives,

different ideas about what
is and is not helpful.

Humans have had disagreements over
belief systems for a very long time.

If we look at how opposing belief systems
have contributed to the amount of violence

and oppression from arguments at a family dinner
table to countless genocides and brutalities

on this planet, we know that there is no
easy solution to proving who holds the truth.

Psychosis is a disagreement
over what is reality.

Psychosis is often a disagreement
over belief systems.

If you tell the person that what
they are experiencing is not real,

like hearing voices is just
an auditory hallucination,

it doesn't make their experience go away.

You just become a person they cannot
talk to about what is really going on.

It simply leaves them to be
alone with their experience.

By a show of hands, has anyone here
ever had a song stuck in your head?

Well, that's an auditory experience
that no one else can hear.

We all can experience some
degree of auditory hallucination.

The research by Rome and Escher that spawned
the international Hearing Voices movement,

showed that many people who hear voices
are managing the voice-hearing experience

without any need for psychiatric interventions,
and that hearing voices is not a sign

that there is something inherently wrong
with you that needs to be eradicated.

And actually, across different
cultures, voice hearing can be seen

as a normal part of human experience.

Here is a fantastic study of the Maori
Indigenous people of New Zealand,

and how what gets labeled as psychosis
by Western doctors is actually understood

and held well within their spiritual beliefs.

I also recommend the documentary "Crazy
Wise" for anyone who hasn't seen it.

Courtney Harding's landmark study of
deinstitutionalization and recovery

from schizophrenia was a
32-year longitudinal study

of 269 back ward patients released
from the Vermont State Hospital.

They were considered the most
severe of all the patients.

Her study showed that half to two-thirds of
people recovered or improved significantly.

In a paper in 1994, Harding combats the seven
myths about schizophrenia, including the myth

that once a schizophrenic,
always a schizophrenic,

in comparing longitudinal
studies from around the world.

She states that "the longer investigators
followed an identified intact cohort,

whether programs were in or out of
treatment, the more pronounced the picture

of increasing heterogeneity
and improvement in function.

These studies have consistently found that half
to two-thirds of patients significantly improved

or recovered, including some
cohorts of very chronic cases.

The universal criteria for recovery," what
Harding used in comparing these studies,

"have been defined as no current signs
and symptoms of any mental illness,

no current medications, working,
relating well to friends and family,

integrated into the community, and
behaving in such a way as to not being able

to detect having ever been hospitalized
for any kind of psychiatric problems."

And with respect to another myth that patients
must be on medications all of their lives,

she states, "When analyzing the
results from the long term studies,

it was clear that a surprising number, at least
25 to 50% were completely off their medications,

suffered no further signs or symptoms of
schizophrenia, and were functioning well."

The authors go on to state that the long
term studies found that more subjects

than not eventually discovered through either
trial, error, or time, that they were able

to function without medication later on.

I do wonder how high these percentages
could be if people were actually supported

in withdrawing from psychiatric drugs.

Even though this paper came out almost 30
years ago, these myths still persist today.

To many people, those myths are
still forced upon them as reality.

What are we doing that might be preventing
recovery, that might even be causing harm?

As Harding's work suggests, and a lot of
other studies, given time people do better.

Change people's expectations that
there needs to be a quick fix.

A quick fix might have worse
outcomes for the long term.

People do not always need to be
medicated right away, and they do not need

to remain high dosages for the long term.

Medication can be helpful to some people.

I work with many people who
decide to take medication.

As prescribers though, please consider that
even if your intention is to put a person

on something only for a short period of time, if
you are not also the one to help them come off,

then they may end up never finding another
psychiatrist who will let them withdraw.

People can and do withdrawal from medications,
they just might need support for how

to do it with the least amount of harm.

Whether to take or not take
medications should always be a choice,

and that in order to uphold true informed
consent, other options must also be presented,

as well as educating people that
withdrawal can be very challenging.

People need this information to make
the best decisions for themselves.

It is unethical to present
only one option as truth.

That's actually coercion.

That medication is the only path is false.

This is not the only way that
people can and do get better.

I never went back to the
psychiatrist who hospitalized me.

He has no idea how I am doing now,
or that how my life has turned out.

He has no idea that I came off all
psychiatric drugs and I'm doing well.

So, most psychiatrists don't see the
long-term picture that people can do well off

of medications, but for those
psychiatrists that do understand this,

there is a bit of a gold
rush right now in the --

in withdrawal, as those psychiatrists who
specialize in deprescribing take advantage

of people's desperation by charging higher,

niche rates as the pharmaceutical
industry has no financial incentive

to research how people can better
discontinue taking psychiatric drugs,

most of the knowledge base
has come from psych survivors,

those of us who have actually
successfully gone through withdrawal.

There are a lot of free resources
for people because the field

of psychiatry has traditionally not
supported people in their choice

to no longer take medications, so people have
had to figure out how to do it on their own.

Really understanding withdrawal and customizing
it is important to help avoid common mistakes,

even by well-meaning prescribers
of tapering too fast or too slow.

Here are some valuable resources to help educate
and if you find them helpful to your work,

please give back to the psych
survivors who created them.

There are many people who
come off because they want

to undo the damage they feel
these drugs have caused them,

and so I work alongside psychiatrists who
do the deprescribing, and I work directly

with the individuals to help them
with everything else around withdrawal

that the psychiatrist usually does not:
managing their sleep, the emotional aspect,

repairing relationships, getting their
feet back under them, as well as working

through the feelings of anger at the years
stolen away by psychiatric medications.

I also help them and their support,
work, support network, understand nonmed,

nonhospital approaches for
dealing with a crisis,

so if things get rough, they have another plan.

Every provider needs to recognize the potential
for damage to a client's existing relationships

when providers push supporters to
force or coerce their loved one

to agree to treatment they do not want.

Many parents take -- follow the
doctor's orders very, very seriously.

This creates a contempt for disobedience
and an incredibly painful power struggle

that destroys many family relationships.

Help should never come at the expense
of existing support relationships.

Providing nonhierarchical dialogs

that avoid power struggles could
dramatically change treatment instead.

If you want to learn a bit more about
this look into the open dialog approach.

In open dialog, the person who
is at the center of concern,

who in conventional approaches is
normally told they have a lack of insight

because of their diagnosis and is shut down
and excluded from treatment team decisions,

in open dialog, that person is a necessary part
of the conversation around decision making,

not to be forced or coerced,
but to be listened to so

that everyone can learn from their perspective.

The provider who takes the time and makes the
effort to help people communicate as equals,

instead of fighting out the power
struggle over whose belief system is truth,

has the potential to create true healing.

Why are those diagnosed with psychosis the
most heavily medicated, those hearing voices

or seeing visions the most
stigmatized, the most feared?

Courtney Harding also discussed an
idea called the clinician's illusion.

The illusion occurs when clinicians repeatedly
see the few most severely ill in their caseloads

as typical, when in fact, such
patients represent a small proportion

of the actual possible spectrum.

Here's the Fool Card, illustrated by Pamela
Coleman Smith from the Smith-Waite Tarot Deck.

Upon first glance, we notice that the
seemingly carefree person is on an adventure,

so caught up in their own world
that they do not see that they are

about to step off a dangerous
cliff and the dog barking

to get their attention seems to go unnoticed.

Thus, the Fool is seen as
inexperienced, naïve, and foolish.

The Fool has also been viewed as the wandering
lunatic, the one who can't keep it together

like everyone else, but the
Fool can be so much more.

The Fool can be the court jester who
often speaks the unspeakable truth,

the one who can get close enough
to royalty to speak truth to power.

The Fool can also be the
one with divine madness,

the one whose messages disrupt the social
order, the belief system of the majority.

As with all tarot cards, and I'll
also add people for that matter,

there are always more than one interpretation.

See now, us as outside observers can only see
one tiny fraction of what is going on here.

We only see this brief moment.

We do not know for sure that he is actually
in mid-step, or that he has paused to reflect

and take in his surroundings with awe.

We can actually cannot even be certain that
there is a dangerous cliff in front of him.

It could simply be a very safe
step down to the next ledge.

We do not know that before this
moment, he wasn't actually keenly aware

and knows exactly where he is headed next.

We do not know his future.

It could be that this folly is what
initiates his growth and discovery.

Maybe his fall doesn't mean death, or
that something bad is about to happen.

Maybe it is the start of his journey, and
that if he had been afraid of his next step,

he would have missed his potential destiny.

This is how we can hold crisis as a
potentially transformative experience

in the life of the person in front of us.

There is always a possibility that it
could provide some meaning and purpose

to the person's life, maybe even a
spiritual awakening, or that there is --

could be much-needed growth and
learning that sparks a change

in how they want to live their life.

Growth is not usually a blissful experience.

From the outside looking in,
and even for the person going

through it, it can look very painful.

And of course, our first instinct is to try
to stop the pain and discomfort at any cost.

But this isn't always the best
response for the long-term outcome,

and if we could instead adopt a treatment design
that holds true to the words of Robert Frost,

"The best way out is always through."

So, what was the meaning
of life that I discovered?

What was it that I was telling everyone
was a pathway forward for humans?

What was so dangerous that I needed
to be forcibly institutionalized?

Simply, it was that we as humans have basic
human needs, that these are food, water,

shelter, yes, but we also have other basic
human needs; that we need to have a sense

of belonging, a sense of purpose, that we
need to have love and attention and affection,

that we need to have self-esteem; that our
society is currently organized to deprive us

of these basic human needs; that instead,
we are taught to compete for survival,

that we cannot be interdependent; that instead,
if we could redesign society to understand

that through meeting the basic needs of all
people, that we could achieve our full potential

as individuals and as a species, that
the way forward is not through division.

The way forward is a restoration of humanity.

If you really ask those of us who were struck
with quote, unquote "madness" about the content

of our messages, there is often a common
theme of somehow wanting to save the world,

that those who are mad may
represent transcendence,

being outside the social order
and able to see beyond it.

And it is not uncommon that the savior is viewed
first and foremost as a mad person or a fool.

I, like many people who go
into the helping profession,

come to this work as a wounded
healer, meaning that I have personal,

lived experiences that cannot be
taught in an academic setting.

It was by personally going through the mental
health system that I learned what needed

to change, that sparked my activism, and ignited
the fire for why I wanted to help others.

I am not alone in this.

There is a large international social
movement of psychiatric survivors,

people subjected to the human rights violations
at the hands of the mental health system.

This movement has had many different names:
the Consumer Survivor Ex-patient Movement,

or CSX for short, the Mad Movement, the Peer
Movement, the Recovery Movement, Mad Pride,

or simply, to many of us,
it's just called the Movement.

It has been co-opted, subdued
and perceived as a threat.

We've been ignored or silenced
because of our anger.

Movement, activists of the
past were much more vocal

in their anger and criticism of psychiatry.

Protests at the APA slogans like "you bet your
ass we're paranoid", one only needs to look

at the free online archives
of Madness Network News

to see how angry people have been for decades.

Judy Chamberlain's book "On Our
Own" is a foundational understanding

of the psychiatric survivor movement and
why people like me have been advocating

for self-help and help that
is designed and even delivered

by those with personal lived experience.

We have a level of empathy
and shared understanding

that can only be learned by
going through it yourself.

Years of activism to create alternatives
like peer support, peer-run drop in centers,

and peer respites have been systematically
underfunded or defunded completely.

There have been long-standing
tensions in the Family Member Movement.

Originally reformed -- the Family
Member Movement formed as a response

to psychiatry's initial theories of
psychosis as being caused by the family,

as in the schizophrenogenic mother.

The Family Member Movement has often been deeply
rooted in the medical model, embracing the idea

that mental illness is biologically based.

But this movement is run by the agendas
of NAMI, the Treatment Advocacy Center,

and historically funded by
the pharmaceutical industry.

The providers have.

Historically, also had their
own differing perspectives.

The medical model, the biopsychosocial model,
the power threat meaning model, trauma.

Is it nature or nurture?

Is it body or mind?

The providers have been aligning with the
family members to force or coerce the patients

to do what the providers
think is a treatment pathway.

The patients resist and are ignored or silenced.

This makes the patients very angry, and then
the family members and providers are offended,

frustrated, and at a loss, and feel that
force or coercion is the appropriate response.

This is where we are at right now.

Wow, what a mess.

Right here in California, there have
been some incredibly alarming trends

to make force and coercion much easier.

The recent expansion of the criteria
for greatly disabled makes it easier

to hospitalize more people against their will.

The introduction of care courts allows
for family members or even a roommate

to petition the court to coerce
someone with untreated psychosis

into treatment through compulsion.

Think about the impact, what people's
lives are actually going to look

like having to go through this process.

On the bout this coming March is Proposition 1.

It looks like it will build involuntary
housing and more involuntary psychiatric beds

by cutting voluntary community services,

like many peer-run advocacy
programs across the state.

Many of us in the psychiatric survivor
community are against Proposition 1.

Putting people on a medication that makes
them sleep 18 hours a day will not solve their

poverty issues.

It will just tranquilize them so that
they are not outwardly angry about it.

Sweeping the streets of homeless will not
make housing more affordable in the Bay Area,

or even prevent the new class
of working homeless.

These are not solutions.

They're not even band-aids.

They are simply out of sight, out of mind.

The idea that Prop 1 will help
the homeless is a fantasy.

It will create more harm.

I feel like I am once again
trying to sound the alarm.

This time, I really hope people are listening.

I think the one place that we all
agree, family members, psych survivors,

most every provider I have ever talked to, and
even those who are compliant with treatment,

the one place we definitely all agree
is that the system is problematic.

We have not exhausted the
alternatives that we can develop.

I'm not saying we don't need
places for people to go.

I 100% support voluntary sleep centers,
psychosis sanctuaries like Soteria House,

Diabasis, I-ward, the RD Laing houses,
approaches for changing one's relationship

to distressing voices from
the Hearing Voices Network.

Allow for freak out rooms, a place where
it is okay to yell and express anger

and you won't get restrained or
injected and put in solitary or jail.

Med-free hospitals or other community-based
programs that can support withdrawal,

communities that understand crisis,
where a person can be supported

to give them time to get through it.

We could design any of these things.

We need to ask people why they are noncompliant.

We have to acknowledge the anger of
those that feel harmed by this system.

It is not a lack of insight, it is
trauma, trauma caused by the treatment.

Force or coercion is not the answer, but the
answer is understanding why people feel this way

and designing a different kind of care.

So, I'll circle back to that
UCSD Grand Rounds I attended.

I did my best to explain to them
what I thought was going on with me,

what I had discovered was the meaning of life
and why I needed to tell people about it.

I said, it doesn't seem crazy to me.

It actually makes a lot of sense that we
all have similar basic needs as humans,

and why can't we agree to create
a world that understands that?

We falsely believe that there is scarcity when
we actually know that there is waste and excess.

I said I wanted them to remove my
diagnoses of bipolar and psychosis.

I felt it harmed my credibility.

They decided not to remove my diagnoses,

but one of the graduate students there
then raised his hand and asked me

if I had ever heard of Maslow's
Hierarchy of Needs.

No, I hadn't.

How much of my life would be different
if, instead of how I was treated

in the psychiatric hospital, someone had instead
shown me this chart and just sat down and talked

to me about one of the most famous theories
of psychology in the Human Potential Movement.

Most anyone who has ever taken a Psychology 101
course, could have had this discussion with me.

Every single person that worked at that
hospital absolutely had the background

to have this discussion, but not one
of them felt it was important to listen

to the content of what I was saying.

They thought they knew what was best for me.

They thought they were helping me.

They really had it wrong.

My mom was told at the NAMI family support
groups that I simply lacked insight

and my only hope for getting
better was through medication.

In the handout she was given, there was
actually one for tips for how to bend the truth

to providers or police in order to
get me hospitalized against my will.

Thank goodness, my mom never did that, but how
she was educated and then what she pushed me

to do deeply impacted our relationship.

It's really sad that I felt I had to cut off
my relationship with my family for many years

in order to prove to everyone
that I could find another way.

They now see what I was trying
to say back then and feel duped

by all the messages they were told
about what was going on with me

and what my life would look
Like and what I needed to do.

No one person holds the ultimate truth.

There is always a bigger picture.

There is a purpose to different perspectives.

There is a purpose to those
that we think of as fools.

It stretches us to grow, to see beyond our own
narrative, to learn from our own foolishness.

Those who actually lack insight are those who
do not try to see from another's perspective,

do not try to understand the
context or bigger picture

of what is going on for a person in their life.

Those who simply reduce everything

into these symptoms mean this,
thus the person must do this.

Psychosis means that a person
must take medications.

This is not truth.

I work with people in psychosis all the time
who do not take medications and who want

to avoid psychiatric hospitalization.

You have to take the time to listen, to truly
understand the content and the context in order

to try to understand the meaning of what
someone is saying and how it applies to them,

to those around them and to their community.

Many clinicians consult me on some
of their most puzzling clients.

Individuals and families find their way to me,

usually when they feel failed
by everything else.

One of the things that makes me
effective is that I am super empathic.

I can feel into what it is like to be them.

And so often, what they are saying, what
they are going through, makes sense to me.

If you put yourself in their shoes,
you can see how anger might really be,

frustration over some unmet need in their life.

So, is it mind, is it the body, or is it spirit?

I believe it is important
to work with all three.

You see, that spark of resistance
in me was my soul.

My spirit knew that I had a different destiny

than the one the mental health
system had laid out for me.

To live at home with my mom over medicated
and on the pathway to drooling and obesity?

No. And maybe I don't want to be president
anymore, but I still do want to live

in a more caring and compassionate world, one
where we see and embrace each other's humanity.

Thank you.

[ Applause ]

Yeah.

[ Inaudible ]

>> Thank you so much for such a
comprehensive, rich, expert talk.

Thank you.

My question to you is about
how to help families, right?

So, you talked about your experience
at home, and I wonder about, you know,

your your family being given messages
that you needed to be hospitalized,

and then finding you not bathing
or not eating or not sleeping.

What can we tell families around how to
be effective during that time of crisis

without telling them to send
their kid to the ER?

>> Yeah, thanks.

That's a great question.

You know, a lot of my work is with
families, you know, in helping them,

because in order to avoid psychiatric
hospitals, you really do need

to work with the support network.

And most of the people I see that get
hospitalized is because they're --

the people around them are tired.

They're exhausted.

They need to go to work, you know.

They can't deal with this person
being up 24 hours a day, you know,

where they feel that they
have to, you know, watch them.

And so, it's really exhausting.

And families, you know, even from the time of
deinstitutionalization, it really put a lot

of expectation on the families, you know?

We didn't create the community support, and
it puts this expectation that families need

to not only feel like they have to
financially support their loved one,

but then also take time off of work to
be the ones be the primary caretakers.

How do you balance that?

You know, and so families are exhausted
and they're looking at the professionals

like you guys are paid to help people like this.

I'm not an expert.

You guys are the expert.

Why don't you help?

And so, they're trying to push their loved one

onto the mental health field,
understandably, you know?

And so, a lot of it is, I work with families
on how to prioritize their own boundaries,

you know, their own sense of, you know,
taking care of themselves, the, you know,

the oxygen mask that, you know, the parents
they do need to be able to go to work

so that they're not also -- we don't
want everybody to start drowning,

basically, and being struggling, you know?

So, one of the things is, is there a bigger view

of how they could support the
individual in shifts, you know?

Finding other people that can come in so
that mom and dad can get a break, you know?

Is there -- even working with mom and dad
on some of the need to always be there.

Like so, you know, there's
sometimes this expectation, well,

I've got to prevent them from,
you know, doing X, Y, Z, you know?

And so, then maybe there's not always
that expectation that is actually needed.

So, I really work with the families on what --

to increase their bandwidth for
supporting what is going on,

because it is an intensity level
that, you know, is alarming.

So, I work with a lot of
people on their fear, you know,

the fear of the worst that
could happen, you know?

And it is a fear, and so we look at,
well, you know, just because X, Y,

Z has happened in the past doesn't mean
that that's going to happen this time.

We're doing things differently this time.

We have different avenues.

We have -- here's, you know, the resource
of the peer respite that they could go

to instead of a psychiatric hospital.

Here's, you know, other things
that they could do.

Now they know that they need to
get sleep, here's some other ways

that they can learn how to
prioritize getting sleep.

I tend to find, if you calm down the whole
crisis energy that everybody's, you know,

just like this, if you start to calm
it all down, the situation just starts

to naturally get a little bit
better, the person starts to be able

to potentially go to sleep, you know?

So, really like create your home environment

that you're all understanding
this person needs to sleep.

So, Mom, don't be standing right in their room,
you know, asking them questions all the time.

Just let them -- you make
your own dinner and relax

and just let them, you know, relax over there.

So--

[ Inaudible ]

>> I have one quick comment, and one question.

On the comment is that, I think, you
know, you brought up, for example,

open dialog, which comes out of Finland.

And one of the things I often think about
in these conversations is that, you know,

there's a lot of emphasis placed on the
role psychiatry as a profession has played

in this dynamic, but, which I don't think
is unfair, but I just think it's important

to point out, too, that there's a lot of
structural issues in our society that play

into this, a lack of a social safety net
that catches people, the healthcare system

that incentivizes care in certain ways
and doesn't pay for certain things.

So, you kind of touched on those, but I just
think it's -- to me, it's very important,

and it's not to like deflect blame from the
field of psychiatry for where we failed,

but to also point out that we live in
a society that is deeply dysfunctional

on a structural level and doesn't
create the space for the kinds

of systems that I think we need to imagine.

And so that's my comment.

My question, one of the places I always
struggle with in these conversations,

I really liked your point about the -- I
forget the term you used, but the sort of bias

that arises when you work with
only the most severe cases.

I happen to work in a jail, which
is a very challenging place for --

around many of these issues, because I
do work with people who sometimes it was

because of their symptoms, sometimes
it was incidental, but, you know,

have wound up in situations that
are very, very serious, including,

on occasion, violence and so forth.

So, my question to you is --
and maybe -- I don't want --

at the risk of over emphasizing a small
minority, I do wonder what your thoughts are

on how to handle these cases where there really,

truly are safety concerns,
violence or self-injury?

What do we do if not apply -- because my fear
is that there ultimately will be coercion.

If it's not coming from the mental health field,

it'll come from the legal
system and the carceral system.

So, I'm just curious what
your thoughts are on that.

>> Yeah, and, you know, that's a great question.

That's why I bring up the examples.

Of course, I 100% agree with you.

I did not have enough time to really, you
know, lay out what are our actual issues,

which I do see as our society
and how it's designed, you know,

and that a lot of what we're
dealing with is poverty,

you know, and we are not addressing that.

We are not addressing that the income
is way at, you know, the few at the top,

and that this is the result of, you
know, a huge amount of inequality

and people not having access to
meet their basic human needs.

And a lot of the you know, anger
is around frustration around this.

You know, there's, it's powerlessness to
change anything and to get your needs met.

So, you know, yes, in, you know, my dream
is that we could change how we, you know,

are structuring our society
to really understand this.

And then the psychosis sanctuaries that I
pointed out, like Soteria, Diabasis, I-ward,

the RD Laing houses, this was another kind
of approach for instead of psych hospitals,

instead of early psychosis programs, this
was the approach that we had, you know,

three of these houses right here
in the Bay Area, actually four,

but they got systematically shut down because
of the rise of the pharmaceutical industry.

And -- but the way that they worked with
violence, basically, so it's not to say

that people won't get violent, you know, ever,
but it's, how do you deescalate these situations

in a way that you don't use, you know, just
rely on force and medication to deescalate.

And so, there are ways, you
know, with if you really.

Start to listen to the person, if you
really start to provide an avenue --

where I said the freak out rooms, because to
understand that if you allow somebody to scream

and yell, most of our environments,
we don't allow that,

because we got to keep the
peace for everyone else.

And it makes everybody very uncomfortable
to be around pure anger, you know?

Everybody gets very afraid naturally.

But if we can allow somebody, we
can create the space, you know,

that they can be able to express anger.

We have these things that, you know, people
pay to go to, like destruction rooms, you know,

here, and we understand that people have, you
know, pent up anger that they want to express,

and when you move through it, often what's
behind the anger is a lot of sadness.

And so, if you can support the person to
move the emotion of anger, move it out

and move it through, you
can go to the next level,

which is then working with
them through the sadness.

And often, that's a way to hold space.

Of course, you know, and in I-ward, there's
still a few people alive that worked --

so Michael Cornwall and Meg Whittaker-Greene,
they've been, you know, working mental health

for many, many years, but they both
worked at I-ward, and so, you know,

they're very much available to talk
about how they worked with people,

because it was full-blown
psychosis, zero medications at all.

And so, people would go into J-ward.

This is in Contra Costa County.

The psych hospital is called J-ward.

They would go into J-ward in full-blown
crisis, they were given a choice.

Do you want to remain in J-ward
and, you know, be on the psych unit,

or here's an option of I-ward
that you could go to.

It's an unlocked facility.

For many years it was unlocked, um,
and they had that choice, you know?

And so, people would go directly, like he
walked over there that day in full-blown crisis.

And the way it was, is like this
milieu therapy person gravitates

to whoever they feel that they want to talk to.

Everyone's just kind of available holding space,

and then that's who you kind
of work with, you know.

And it's just a different way of
designing, you know, treatment and care.

It's just the openness, the
availability to have conversations,

go with things where you're not
responding with a lot of fear,

or we got to control this situation.

Instead, you're open to what is happening, and
that helps the person to feel seen and heard

so much that they actually don't have to
yell at you to try to get you to hear them.

Okay, yeah.

[ Applause ]

Okay, thank you.

[ Applause ]

[ Music ]