Removing the Stigma with Dr. Stephen Hinshaw

Removing the Stigma with Dr. Stephen Hinshaw


I’m Cam Carter. I’m the director of the
Behavioral Health Centre for Excellence. I want to welcome you all here tonight. If you have been to one of our previous presentations I’d like to welcome you
back and if this is your first time, I very much what I welcome you here. So about
three years ago the Behavioral Health Center for Excellence was created by
funds that derived from the Mental Health Services Act and two centers were
founded. One at UC Davis and one at UCLA and the goal of these centers
was to bring something that up until that time had been missing from
the Act and that is research. And through the BHCOE we’ve pursued this IDEA. The I stands for innovation and the BHCOE has sought to bring innovation to
mental health care in California by supporting a range of very innovative
research projects from very basic projects aimed at understanding how the
brain works and develops through to a very applied studies using clinical
interventions, brain imaging, large data analysis to try to improve mental health
care. We have also focused on what we would call dissemination. The challenge
of getting evidence-based practices that have been shown in academic centers to
be effective at treating different forms of mental illness and disseminating them
into the community and doing that in a way that there’s a strong evaluation
component. So we’ve done this through a series of presentations trainings and
workshops and webinars that the Center has put on. And we’re also very actively
collaborated with many counties around the state. And at this point in time
actually we’re working on projects that will provide a high level of expertise
evaluating and demonstrating the impact of prop 63 funded research in different
counties particularly in the Central Valley and around here in Northern
California. The third part of the IDEA is evaluation
we want to show the impact of evidence-based practices and we wanted
to create a capacity to demonstrate the impact particularly of prop 63 research in California. And then finally the goal is also to adapt to be flexible
to take things that might work in a university setting and figure out how to
make them work in the community and that includes taking factors such as culture,
race and ethnicity and the things that a given community values
in terms of the kind of outcomes that they’re looking for from mental health
interventions. So that’s what we do in the behavioral health center for
excellence. This is our team. We have an administrative core and this reminds me
to give credit to Amanda Berry and Jessica Hicks. Jessica is here and
Amanda is..she’s still outside shooing people in. So to give credit to Amanda
and Jessica for pulling this presentation together. We have an
evaluations and outcomes core that’s doing that evaluation work around the
state. Carolyn Dewa, Tara Niendam, Joy Melnikow, Ruth Shim who is in the
audience and Rachel Loewy from UCSF and then we have a policy and education core
that’s led by Darrell Steinberg, mayor of Sacramento, and also Dean Fred Meyers
who’s sitting over here watching this presentation. So that’s our
team. I kind of wanted to share you just a little bit about the history of the BHCOE and our mission and I wanted to introduce you to that team. Now I’m going
to turn the floor over to Julie Schweitzer who is responsible for having
the idea to to bring Steve Hinshaw here and to talk to you about stigma. And I’ll give her a chance to introduce Steve. Thank you everyone. It’s gratifying
to see so many people here tonight, I’m really glad that you could hear about
Steve’s story. So Dr. Steve Hinshaw is a professor of psychology at UC Berkeley
and he’s also the vice chair for psychology at UCSF. He’s a very busy guy.
He earned his bachelor’s degree at Harvard University and subsequently
his PhD at UCLA. Early in his career after being up in Northern California he returned to UCLA as an assistant professor and about the mid-80s is when I first met
him. I had a very good friend who was a graduate student at UCLA and he pulled
me over aside at a conference and he said you have to meet this guy Steve Hinshaw. He’s amazing and he’s going to do incredible things for psychology. And
little did I know that 30 years later I would have the privilege of being a
collaborator of Steve’s. So I’m very grateful that I have the opportunity to
work with him. Steve has won many awards, lots of NIH grants, he’s extremely well
known for his work in stigma and girls with ADHD. But among his colleagues he’s
known as the fastest responder to emails. Nobody can beat his record. So just all
of you of my colleagues out there just know Steve is a gold standard. So he’s a really great colleague in that way too. I will leave Steve to tell you more about his childhood experiences with
growing up with his father and the doctrine for silence about his father’s
condition. But what I did want to talk to you about how remarkable he is and in
terms of his childhood the challenges that he encountered and how so many of
us didn’t know it and the bravery that I feel that he’s just the talk
tonight and about his book is sharing his personal experiences and what that
must have been like for him. Steve is really he’s just a force of nature and
so I really think he’s going to change the way people view mental illness and
how people view people the family members as well and how they’re impacted
by mental illness and if anybody can take this on it’s Steve. So please join me
in welcoming Dr. Steve Hinshaw tonight and to talk about his journey and his
call to action. [Applause] So here’s what we’re gonna do. I’m gonna
show a very few slides and then I’m gonna actually read passages from my
latest book and then we’ll end with a few photographs. So, what is stigma? it’s a
horrible term. Say it under your breath– stigma. The africative stick in your
throat sort of a horrible term. Some people say we shouldn’t really use this
term because it makes people who are victims of discrimination deserve it.
Racism exists, I think we have to use the term, I think we have to use the term
stigma. But it would be great if we didn’t have to. So what does stigma
literally mean? Back in the Agora in Athens it might be important to know who
had fought for Sparta or who was a slave, former slave. So near the toga would be a
brand in your neck or shoulder. That’s a stigma. It’s a literal mark to signify
that you’re part of an out-group. Most stigma today is psychological not
physical. Hitler branded people in camps, some nations have branded hiv-positive
individuals, much more psychological today. Which groups receive stigma? Well
that changes over time. Cultures evolve and change. Left-handedness was a
terrible stigma. Not so much anymore. What are the bottom three conditions in terms
of stigma in our country today? Do you have a mental illness, do you abuse drugs,
or and/or are you homeless. Even on scales questionnaires where you could
sort of fake good to please the examiner these are the lowest three conditions in
terms of public attitudes. Things can change. Attitudes toward gay marriage
have improved markedly in the last 15 years as we’ll see in a minute not so
fast regarding mental illness. So in 1950 a bunch of Berkeley psychologists and
sociologists wrote the authoritarian personality and the idea was that
bigotry emerged from very harsh parenting and repressed homosexual
tendencies of a very psychoanalytic perspective
and that few people were bigots. Social psychologists today are pretty clear
prejudice and stigma is universal. It’s part of social cognition. Stereotypes, we
all stereotype. I never do, I’m a professor, except against Stanford our
rival. That’s a private school they wear red and you heard in my tone maybe I’m
not just stereotyping as a private school but maybe my attitude isn’t so
good and maybe no Stanford students can take my course for continuing education
so I might discriminate. Stigma involves all of these facets but it’s really
global. If you’re a member of an out group everything about you you can
attribute to that group membership quite pervasive. I wrote a book on stigma ten
years ago for Oxford Press called the mark of shame. Who can tell me the
artist who painted what I chose for the cover of the book? Art history minors out
there? Some of you are of the age where you probably had posters by
this artist in your dorm room. Hieronymus Bosch the Garden of Earthly Delights the
descent into hell. And this painting is called the extraction of the stone of
madness. So we see the surgeon but the surgeons wearing a wizard hat so we know
there’s problems right away. Try finding carving a hole into the gentleman’s
skull the priest with the chalice is giving a blessing that poor patient is
the only one looking at us. Now this is an old painting hanging in the Prado
1496. If I had a pointer handy can you see what’s coming out of the gentleman’s
skull it doesn’t look like a rock a stone that was the alleged cause of
mental illness in Holland around that time but it looks like a couple of
little white tufts. Bosch was painting a picture of the surgeon wizard removing a
flower from the gentleman’s skull because the name for mental illness back
then in Holland you were called a tulip head. So maybe if you removed the label
you would remove the mental illness. In some ways it’s
a starkly modern or postmodern painting even though it’s hundreds of years old
so I chose it for the cover. How do we know that people with mental illness are
stigmatized? Lots of attitude surveys. Sue Fiske in her two by two. Are you warm or
cold are you competent or incompetent locates people with mental illness in
that bottom left quadrant where you’re not very warm and you’re not very
competent the lowest of the low. When people view images of people with mental
illness and they’re sitting inside an fMRI scanner insula lights up pretty
quickly before the frontal lobes have much of a chance. So there may be some
disgust with the very imagery of mental illness. What’s taken over lots of social
psychology and social cognition is implicit attitudes more recently. Not
what you say on a questionnaire but how fast your reaction time goes to the
pairing of the term with the the word good or bad. Not much research on
implicit attitudes toward mental illness but the existing research shows that the
overt attitudes might just be the tip of the iceberg. In half the states in our
country today and I choose my words advisedly. If you’re crazy enough to
admit you have a mental illness you don’t get your driver’s license renewed,
you don’t maintain custody of your children, you can’t run for office or
serve on a jury. My vision uncorrected or corrected is
2200–don’t let me drive. But I was depressed or my relative has an eating
disorder so I can’t run for office it’s a good thing those laws weren’t on the
books in 1860 or Lincoln could have never run for president. With all the talk
today about political leaders and psychological evaluations I think we
have to be a bit cautious. So there’s empirical evidence just
looking at our culture, there’s a lot of discrimination. Okay before the chalk
talk ends here two related important concepts. If you’re a member of a
stigmatized group it’s likely, not inevitable, but it’s likely that you
know what the campfire stories or the social media says and you’re gonna take
on those attributes. You might internalize a stigma, what’s
sometimes called self stigma. Now in mental health there are good scales to
measure self-stigma. Independent of the symptoms of mental illness you have your
levels of self stigma predict never getting engaged in treatment or dropping
out early. So the societal mores if you will when they’re internalized don’t
allow people to get treatment. Of course there’s policy and health insurance
reasons too. So self stigma is quite important. Goffman, the berkeley
sociologist, wrote a book 1963 called stigma a great book and in it he said a
bit tongue-in-cheek if society stigmatizes a group it’s only common
courtesy that you’d stigmatize everybody associated with that group and person.
It’s just courtesy. Family members, professionals, psychologists and
psychiatrists work with people with mental illnesses we’re not usually the
top-ranked specialties in our fields. Families were directly blamed for their
kids autism through refrigeration or schizophrenia through the schizophrenic
mother as part of our curricula until not that many decades ago. So
professionals and family members bear the brunt of what of what Goffman would
call courtesy stigma or sometimes it’s called today associated stigma. Well of
course we’re much more liberated than back in the 50s, right? American
population knows a lot more of the facts of mental illness the same measures have
been used for the last 60 years but three times more Americans will
automatically associate the term mental illness with violence than in 1955. And
social distance how close would you be– take the same bus, live in the same
hemisphere, let your daughter marry someone with mental illness, those
distance scales really haven’t budged since about 1955 or 65. So we know more factually but our attitudes have nowhere shown the
improvement that say attitudes toward gay marriage have. So this is one of the
puzzles it’s clearly one of the answers is not just teaching the facts about
schizophrenia or autism or bipolar disorder or ADHD but something much more
to do with empathy and rights. Well, if we just said all forms of mental illness
are genetic wouldn’t that reduce stigma? It reduces blame, but actually in many
experimental studies participants feel hopeless about the person and increase
their social distance. So this uncontrollable attribution to purely
genetic causation A) isn’t entirely accurate and B) is probably not the
solution for stigma. So of books right out front here I finished this book
after working on it for a long time in between the the other stuff I do in
research and administration and teaching and I’m going to tell you a bit of a
personal and family story that might bring to life some of what I’m talking
about in terms of some of the statistics in science. So I’m gonna actually read a
bit from the book if I can dig my glasses out why would I call a book
about my family and stigma “Another Kind of Madness?” madness is sort of an archaic
almost stigmatizing term. So from the books preface– “the inspiration for the
book’s title comes from a quote from James Baldwin in one of his masterpieces
Giovanni’s Room quote “people who remember court madness through pain the
pain of the perpetually recurring death of their innocence people who forget
court another kind of madness the madness of the denial of pain and the
hatred of innocence and the world is mostly divided between madmen who
remember and madmen who forget” I cannot of course claim to comprehend Baldwin’s
own experiences but his words are inspirational regarding this book as I
try to make clear stigma itself is another kind of madness a form with
consequences that are far worse than those linked to mental illness itself.
More broadly stigma fosters a denial of human potential. The silence and shame
must be transformed into open dialogue. Unless we make progress toward this goal
we will never realize what we can become as a species.” So another kind of madness
a kind of intentionally provocative quote from Baldwin about
stigma maybe being a worse form of madness than mental illness per se. So here’s my
dad and me, dad was a philosopher as I’ll tell you about. This is me right after my
freshman year of college we’re sitting in the backyard at our home in Columbus
Ohio. Dad was a professor at Ohio State. I kept that mustache for many years until
I met my wife a while back who told me that the 70s had ended a long time ago
so I got rid of the mustache soon thereafter. But this was a moment in time
that I’ll describe to you. Where did this story start? Well you can go back many
generations but I’ll read you a little bit about where in some ways my dad’s
story started. “In the late summer of 1936 scalding winds scoured the Southern
California region. As the calendar reached September the sixteen-year-old
known as jr. couldn’t shut off the voices now shouting inside his head
preoccupied with the growing Nazi threat in Europe day and night he roamed the
sidewalks of Pasadena the same ones that had carried him to grade school on his
metal roller skates a decade before. Begging him to save the free world the
voices grew in intensity each day desperate to emerge with a plan jr.
continued his relentless pacing. As his thoughts gathered speed
another insight emerged. Alone among mankind he had attained the power of
flight. His arms in fact had become wings like Icarus
if he lifted them toward the sky he’d be aloft. Once he soared toward the clouds
the free world’s leaders would witness this magnificent signal and pledge to
conquer the fascists. Alas through his tortured logic he reasoned that his
flight would be seen around the globe only after sunrise. For now he must await
the dawn using every ounce of his energy to shield his secret. The Nazi threat is
real the voices called out black and white
newsreels looped before his eyes. Brown shirts marching, Hitler’s speeches before
massive crowds. Repression grew but America did nothing to heed the signs
possessed by his new mission he understood that if he dared not step
forward who would but how if not for him the fascist might prevail. As the early
morning hours inched toward dawn the winds abated finally a brilliant yellow
orange the Sun emerged to the east spreading long shadows from roofs and
palms. Enthralled by his energy and his remarkable insights Junior reached his
block on North Oakland Avenue moving furtively past a few yards to find his
own home a dark brown bungalow now directly in front of him. Breathing in he
crossed the lawn with muted footsteps as the front door beckoned he stared at it
and then above all was silent in the early daylight. There was no turning back,
the time was now. But how to ascend? Thinking fast he nimbly scrambled up the
trellis steadying himself as he found footholds. A final thrust and he was on
the roof below the small front porch the walkway twelve feet below the sky loom
majestically before him the air already torrid. The voices inside his mind
reached a crescendo pleading with him save the free world
glory would be his approaching the edge he shed his clothes and heaved them over
shoes pants and shirt floating to the ground beneath. Suddenly cooler he held
his breath calf muscles straining arms out flung he pushed off and propelled
himself forward. For a second there was only the feel of the air against his
skin. The ground rushed toward him before everything turned black.” So dad was
sixteen and a half missed the first half of his 12th grade year.
His brothers, he had five brothers rushed out of the house got him to LA County
Hospital. After two weeks there with the diagnosis of paranoid schizophrenia he
was shipped to Norwalk County Hospital. Norwalk still exists one of the few
public mental hospitals in California under three different names since then
where he stayed for five and a half months in adult facility there was no
school he worked the garbage crew and his treatment as I went through the
records, well, there was no psychotropic medication he didn’t have therapy this
was pre insulin coma or ect but he was chained to his bed at night to prevent
wandering. Some of his roommates had microcephaly which you might today get
from the Zika virus and as dad once he began to talk to me a long time later
said I really formed my identity then I realized I was flawed mentally just as
they were physically. Two months later in November his dad got called from the
superintendent saying he had to rush over to the hospital. Dad was a football
player and shot-putter he was admitted at about a hundred and eighty pounds. He
weighed 117, he believed that the Nazis had poisoned the food at Norwalk so he’d
stopped eating and the minister was called in to deliver last rights. My
grandfather thought he’d never see his son again in this world. Somehow the voices
abated by early spring the staff noticed this great improvement and dad was sent
home that following weekend. What was the family therapy outpatient plan? Sorry to
be sarcastic. What was the medication follow-up plan? There was none. And the
family didn’t want to talk about what had happened for the last six months
because it might jinx his recovery. So he started twelfth grade six months late
earned a lot of A’s went on to Pasadena junior college started to get interested
in philosophy and psychology big issues big ideas had a full scholarship to
Berkeley but he gave it up to go to Stanford. Terrible decision he made which
never forgave him for and his life of a lot of pretty brilliant
attainments and really severe psychosis for those of you many of you in the
audience could hear an a manic episode brewing and then over boiling back in
that September misdiagnosed. He went to graduate school at Princeton,
he had a fellowship there to study philosophy. He didn’t go overseas it was
the early 40s because he had a four F from being in a mental hospital and the
Quaker family were also conscientious objectors. His first semester at
Princeton the department chair said starting in the winter term and through
next fall for a year calendar year you’ll be having a weekly one-on-one
tutorial with our visitor and dad said who’s the visitor he said well it’s
Bertrand Russell. So dad had a one-on-one three-hour seminar at Russell’s home. His
last year of grad school he was introduced to Einstein and wrote a
chapter on Einstein’s social and moral philosophy. And I went to Harvard and UCLA. I
thought I had a pretty good education but there’s always a comparison, right?
It’s always hard to top what your family has done. Yet
right as he was finishing his dissertation in the philosophy of
science in late 44 he thought he could predict the end of World War II via
telepathy. Started to get quite paranoid the police were called he’d taken the
train up to New York City and he was shipped to one of the closest big mental
hospitals to Princeton Philadelphia State Hospital at byberry with another
very psychotic episode. While he was there one of his older brothers who
worked in DC drove every Sunday with a gas ration card to visit and he got him
a day pass and his little brother Virgil jr. started shouting in the car I’m
being held at a concentration camp in Germany get me back you’re a
collaborator. So my uncle who was an economist very rational guy thought well I
can’t take good progress notes this week. I realized your dad was still very ill.
But if you look at the exposes of Byberry that came out in the late 40s and
50s before it was finally torn down in the late 80s. It was known as the worst
mental hospital in the United States. There were 7,000 men in one men’s dorm
in space for 1500 and conscientious objectors who were actually placed there
instead of going overseas smuggled out photographs and there were regular
beatings and deaths. So at one level the metaphorical truth of being in a
concentration camp wasn’t so far off from what happened at Byberry. Dad was
beaten every week by a combination of fellow patients and staff. Wasn’t sure I
believed him until not that long ago I saw for myself what Byberry hospital was
like. He was there for six months again spontaneously recovered, went back to
Southern California but he had a PhD in philosophy so he applied for academic
jobs and Ohio State made him the best offer and he moved to Columbus. He met my
mother a couple years later who was a grad student in history and English they
fell in love and what did dad tell mom his then fiancee about his past.
Honey, I had a little trouble in high school and at Princeton. You wouldn’t
tell a fiancee about being paranoid schizophrenic and in a back wards of a
couple of county and state mental hospitals. So when did mom know? When she
became pregnant with me and pregnant with my sister. Both times dad wasn’t
around for the deliveries. We know about the high likelihood too high for women
with a history of depression experiencing pregnancy and childbirth to
undergo postpartum depression and psychotic depression less is talked
about about the established fact that for men with a vulnerability their
partners pregnancies are fairly reliable triggers of bipolar episodes,
manias. Harder to come up with a strict hormonal theory for that the way you
might for postpartum depression. Maybe the loss of sleep or some existential
fear of bringing someone into the world. And all through the 50s when my little
sister and I were young, dad had terrible episodes,
was often gone, asked his lead psychiatrist in Columbus what he should
tell, when we got a little bit older, Sally and me? And I’ll never forget once dad
started talking to me his quote of the psychiatrist’s reply, “If
your children ever learned about your mental illness and hospitalizations
they’ll be permanently destroyed you and your wife are forbidden from ever
mentioning it.” So the doctor’s orders were never talked about it. What happens when
kids experience some problems in a family but nobody talks about it?
Likely internalization. Better to blame yourself then to believe the
world’s just a cruel random place. Hey it was an idyllic childhood. Dad had 50
yard seats at Ohio Stadium for the Buckeyes.
Except he would vanish for three months six months or a year at a time and
nobody ever talked about it. So let me give you just a little sense of what
that might have been like. First grade had ended, I noticed that dad wasn’t home. The
air outside was warm the pavement baking in the noonday sun. I asked once or twice
but mom said he’d return from his trip pretty soon, maybe a few more weeks.
What trip I inquired as softly as I could but she said nothing more. One
afternoon in the early summer crossing the living room toward the back porch I
stopped short something seemed to be hovering nearby though I couldn’t quite
figure out what. My skin grew cool soon my eyes were pulled upward as though by
a magnet with the start I saw them near the ceiling a string of balloons.
Incredulous, blinking, I looked outside through the porch where another strand
hovered over the backyard all those different colors. Had there been a parade
nearby? Some kind of celebration? Limp and deathly still they’re tight skins
glistening they floated there without a sound as I continued staring it dawned
on me that the balloons were filled with poison gas. Hidden by the outstretched
plastic skins the molecules inside were pressing for release.
The danger was huge thoroughly frightened by now
I scurried upstairs to my bedroom was this a vision of some sort? To this day
I’m not certain but I told myself back then that if I kept my eyes focused
right in front of me my gaze pointed straight ahead I might never see them
again. Just a little bit more, trying to remember those early years. As strong as
mom was holding the family together through sheer force of will she didn’t
want to see me sad or angry it might remind her of another male in the house
whose emotions could threaten destruction. I learned to keep things in.
Throughout no one could let on that anything had changed we were all engaged
in serious play-acting the costumes stiff and the scenes perplexing without
rehearsal. Over time we ended up pretending that we weren’t pretending
enacting the ultimate in fantasy roleplay each performance was live and
we acted out our roles as though our lives depended on their success. Why were
the most important things in our family’s existence such an ongoing
mystery? Whatever lay behind the silence must have been so devastating that would
have destroyed us if brought out into the open. For the past couple of decades
beyond my career long research and teaching in child mental essent mental
health I’ve been engaged with the concept of stigma. This term is defined
as the shame and degradation meted out to members of social groups believed to
be unworthy dirty or untouchable. Throughout history and across cultures
many characteristics have been stigmatized including physical deformity
or disability diseases like leprosy now known as Hansen’s disease minority
status with respect to race their religion any sexual orientation other
than heterosexual being adopted and having a mental illness. Think of the
experiences, questions and decisions people like my father faced and far too
often still do. Can anyone tell if my secret of being insane a madman comes
out I’ll be shunned. Covering up completely is the only course. Stigma
breeds shame, stigma breeds silence. So it was a wonderful and terrifying
childhood. By middle school high school I was into sports studied pretty hard kept
a pretty rigid schedule went back east to college came home for my first spring
break thinking well nothing much would happen. Got to get ready for term papers
and finals back at Harvard and Sally, my sister was in high school mom was
over teaching English at Ohio State and one of those April mid-april days dad
pulled me into a study at home and said son perhaps you should learn of some of
my experiences. So for 30 minutes he told me about Pasadena and saving the world
from the Nazis and many of the experiences and we we had regular talks
after that. Why did he choose then? Well I was 18 I just turned 18 as a freshman in
college I wasn’t a child anymore remember his doctor said if your
children ever learn so I think he was adherent to the doctor’s orders and had
been waiting for a long time. I changed my major to psychology and social
relations that spring. Maybe I could solve the riddle of dad’s mental illness
maybe mental illness neurodevelopmental disorders all together. So I had a
mission my grandmother was a missionary my step grandmother was a missionary but
if I couldn’t sleep sophomore year junior year senior year I kept thinking
that well we knew back then the Danish studies had come out schizophrenia runs
in families in its genetic. I’m probably next because with whom did I discuss any
of this? My roommates or girlfriends, are you kidding? I wouldn’t be fit to be a
psychology major no one would want to see me or be my friend or go out with me.
So it took me a number of years to start to talk about it gradually see a
therapist or two about it. Let others in on the family secret that
had been so shameful but it all started with that first mid-april day my first
spring break back from college. Worked with kids worked at summer camps ran a
school ran a summer camp went to UCLA for grad school studied developmental
psychopathology. But every year I realized more and more we got to talk
about the narratives and the stories not just the science, they go hand in hand.
Scientists have to be objective when they’re testing a hypothesis. Scientists
don’t have to be objective to figure out what the topic is what the subject
matter is. The discovery phase of science needs to be balanced with the
confirmatory phase. I’m going to show you a couple of pictures. I don’t think I
have any text left in any slides. So here is a photograph from 1923 in my
grandfather Virgil senior was head of the prohibition party in the US then
he’s the guy who got the 18th amendment passed and all six of his sons later in
life would often drink a toast to their to their father’s great work.
They were all Liberal Democrats and drinkers. But here is a photograph from
1923 called the motherless Hinshaw boys because the
boy’s mother my grandmother had died from cancer two months before at the very
end of 1922. So there on the sidewalk out in LaGrange Illinois there’s uncle
Harold 11 and a half tall strong athletic guy who started to drink a year
or two later and died of alcoholism. Talk about stigma in a family of the
prohibitionist. Over in the wagon on the left is my uncle Randall the economist
who visited dad and heard about his delusions of being held in a
concentration camp at Byberry. There’s Uncle Bob in the middle just turned five
he was the first one out of the house in 1936 seeing his little brother on the
sidewalk below the porch roof. Decided within a week as he later told me to
become a psychiatrist and a psychologist and he did he had an
MD and a PhD and did a lot of psychiatric work. He really wanted to
prevent others from developing the mental illness his little brother had.
And then there’s little Virgil jr. three years and three months of age, kind of a
frozen expression on his face. He just lost his mother two and a half months
before. Vulnerability, risk, obviously bipolar disorder has a huge genetic
liability. I diagnosed dad with bipolar correctly after college before any of
the his own doctors did. But dad was the only one to have lost his mother before
the age of five among the original four boys and that’s a pretty crucial
sensitive if not critical period two to three four or so losing a parent then
ups the odds for later mood disorder quite considerably. Of course the quality
of relationships with the remaining family members is a bigger potentially
protective factor. And my grandfather wanted to get out of the Midwest moved
out to California to Pasadena met another missionary my grandmother had
been a missionary married her a couple of years later they had two more boys
but my step grandmother chose my dad as the youngest of the four original to
really school in the ways that she had with her mission school in Central
America and ritualistically physically punished him. As my dad wrote in one of
his journals that I discovered years after we started talking in a sort of
philosophical but tentative voice, “today I believe it might be thought that I was
a victim back then of what’s today known as child abuse.” So we know that despite
the high heritability of bipolar disorder if you have that liability and
of other early signs and you’ve also been physically or sexually abused this
predicts a much higher suicide risk than for other cases of
bipolar disorder earlier onsets and harder to treat treat sometimes rapid cycling
episodes. To me it’s a classic example of gene-environment correlation. There’s
huge genetic liability but experiences matter too and one of the things I talk
about in the book and I’ve tried to do throughout my career is not be a
reductionist on either the biological or the environmental side. We really have to
believe in transactional models which which is what we in developmental
psychopathology do, but it really hit home for me. A couple more pictures. So
here’s dad at age 18 after his first year at Pasadena junior college he
finished 12th grade he’s about to get a scholarship to Stanford he’s been a year
and a half out of Norwalk Hospital looking pretty good pretty recovered. But
then until pretty late in his life the episodes kept coming repeatedly. Here’s
all six boys in the family so you’ve met the first four. There’s uncle Harold over
on the left, his best job was as a golf caddie he’d been drinking since he was a
mid teenager died young. There’s uncle Randall the economist. There’s Uncle Bob
in the plaid shirt who had just received both his MD and his PhD here in the late
40s. Like all these guys and like me and my sister and our three boys very strong
tendency toward migraine. Bob’s were probably the worst in the family and as
an MD he started prescribing himself barbiturates and then injecting himself
with barbiturates and then losing his leg and then dying of kidney failure.
So substance abuse comes up as well as bipolar illness here. There’s dad in the
white t-shirt he’s gained all his weight back from the terrible episode at
Norwalk when he was a teenager looking very good there. He’s been an assistant
professor at Ohio State for a couple years back in Pasadena for a reunion. Now
here on the right are the two half-brothers, the products of my
grandfather and step-grandmother. So very quickly they’re both in their 20s the
other guys are in their 30s. Both of them have male pattern baldness the other
guys have full heads of dark hair. Uncle Harold,
I’m sorry Harold’s over on the left. Uncle Harvey second from the right was
discovered to have perfect pitch when he was four became a concert pianist
playing at Carnegie Hall and a professor of music. Uncle Paul on the far right was
a soloist with the LA master coral for 47 years. So a lot of musical ability. Harvey in the sweater vest firstborn son
Harvey jr. developed schizoaffective disorder and shot himself in the chest
when he was 31. Paul’s oldest son Marshall, so I was in
between them in ages. I was the oldest son of course of my dad.
Paul’s oldest son Marshall started Cal in the fall of 68 started hearing voices
and he’s had schizophrenia for 49 consecutive years.
He lives in downtown Berkeley in an apartment, he’s been out of hospitals for
a long time that’s about as big as this table 3 over probably the loneliest
place I’ve ever been but he takes his medicine he has four teeth left and I
bring him food every couple of weeks. All through growing up especially after
dad’s revelation knowing about my cousin’s other firstborn sons, what did I
think? Could have been me. What did I do? Just the genetic
luck or was it all that hard work I was supposedly doing to ward it off or… when
you don’t talk about it much as a family you invent all kinds of stories. So
there’s a little mini genetics lesson inside the the six Hinshaw brothers. Spring break we went to Florida and
played shuffleboard one of the periods when Dad was well in the late 50s. I got
my PhD from UCLA mom and dad came out mom took
picture near El Capitan beach in Santa Barbara. Dad’s got a full head of dark
hair in his mid-60s, not everything’s genetic. a little bit of a punch from the
lithium he’d started taking once I had diagnosed him. And I’ve still got my
mustache. And here five and a half years later first appointment at Berkeley we’re
at Stinson Beach and if you look closely dad’s lost 25 pounds and started to stoop. He was the fourth patient in the United States to receive Thorazine in
1953. His brother, the psychiatrists and psychologists got him a dose from France
shipped over. And dad had countless ECTs during the 50s and 60s for his
alleged paranoid schizophrenia back in the days when it was more like One Flew
Over the Cuckoo’s Nest. ECT is an incredibly effective treatment for
refractory depression these days but back when Dad got it at Columbus State
and and other hospitals longer pulses much more punitive and terrified him. And so dad’s demise of a Parkinson like illness there’s only one
other case of Parkinson’s I know of in the family might have been ushered on by
the wrong diagnosis and the wrong treatments, I think we’ll never know that. So what do we talk about? There’s a lot
to discuss. Let me focus on what to tell children of these six sort of key points
here. I met Bill Beardsley a number of years ago the head of child psychiatry
at Boston Children’s Hospital professor at Harvard Medical School renowned
expert in resilience mood disorder risk. He devised a form of family therapy
20-some years ago expressly for families in which one or both parents has either
depression or bipolar disorder. Now, the first rule for this family therapy is
either or both parents need individual therapy and medication if indicated. This
isn’t too replace that. But the form of family
therapy that Beardsley devised focuses on communication between the parents and
the kids. So it does often usual structural family therapy kinds of
things but for the crucial middle weeks of the 16-week regimen kids go to the
playroom or do something else and the therapist says okay mom and dad or dad
and dad or mom and mom time to start creating some language to talk with your
kids about what’s going on at home and the parents if you read Beardsley’s book
on this often saying what are you talking about the most shameful thing in
my life we can’t talk about this. Remember that consent form you signed?This
is what this therapy is about and so the therapist drags the parents kind of
kicking and streaming rehearsing what to say to the kids about dad’s drinking or
mom’s absences or whatever the symptoms of the mood disorder are bringing into
the kids lives. The kids come back in a couple weeks later they do for the last
month of the therapy a lot of back and forth communication. At the end of it in two
randomised trials at the end of 16 weeks not to surprisingly the kids getting
this form of family narrative therapy are better adjusted socially better
adjusted academically higher self-esteem. Four years later with no subsequent
intervention their risk of developing major depression is cut by 50%. There’s
clearly heritable risk for mood disorders bipolar disorder more than unipolar
depression but some of the intergenerational risk is communicating
and preventing that internalization. So Beardsley has gotten this part of some
national programs I don’t think it’s received all the attention it should. To
me it speaks to the combination of biology and psychology if you will
genes and environments that need to come together to solve the communication and
stigma gap as well as the the biochemical genetic gap that may relate
to serious mental illness. So I find it kind of amazing at this point
in my career in life that with a wonderful introduction Julie gave me
that she said it was kind of brave. It shouldn’t have to be brave. What’s
happened with breast cancer? Is it this Sunday our next the NFL dudes will be in
their pink knee socks! Right, the guys who are 280 pounds and can run a 4.3 40. And the Players Championship every spring every golfer in the final round is wearing
a pink shirt. Breast cancer is a cause because women have talked about their
experiences. Would an oncologist have told back in the day in the 50s my dad
never tell your children about your cancer it will permanently destroy them.
But remember, right at that time, 30s 40s and 50s you never put cancer in your
family member’s obituary. It was a shameful disease you brought on yourself
because of weak moral fiber. Cancer today is a cause because we talked about
it. I think the same thing can happen with mental illness but it’s going to
take a lot of work. So, last passage. I had four pages to do an epilogue after all
this family narrative so I went for it. The mental health crisis remains firmly
in place. Three times more Americans die from suicide than homicide, but who would
know this fact from the news which routinely features gun violence
perpetrated against others but almost never discusses the inner pain related
to depression and suicidal thoughts. Around the world suicide is the leading
cause, the third leading cause of death for people 15 to 44 and the leading
cause of mortality for adolescent girls. For people in their 40s mental illnesses
predict a greater level of disability than all physical illnesses
combined. Mental disorders don’t afflict them, a deviant group of flawed
irrational individuals, but us. Our parents, sons and daughters,
colleagues and associates, even ourselves. A quarter of the population will
experience a significant mental disorder in a given year. Countless veterans and
trauma victims suffer from PTSD. Rates of child onset conditions like autism and
ADHD are skyrocketing. Eating disorders contribute to major
health risks. Substance abuse devastates lives, especially via the current
epidemic of opioid and heroin related fatalities. Together with thought
disorders anxiety disorders and a range of developmental conditions mental
illnesses drain hundreds of billions of dollars annually from the US economy and
over a trillion dollars around the globe linked to unemployment related physical
conditions and sheer despair. Personal and family suffering far outstrips the
financial burden. Chillingly, serious mental illness reduces life expectancy
by 10 to 25 years through risky behaviors poor exercise and health habits,
proneness to physical diseases, low access to health care and
self-destruction. Yet, it takes over a decade on average
for most people experiencing symptoms to seek help linked to the shame and denial
surrounding the entire topic. What if it took people 10 years or more to
understand and treat symptoms of heart disease or cancer? The headlines would
never stop. Reducing stigma, that other form of madness, far worse in its
consequences than mental illness per se will take coordinated strategies,
enforcement of anti-discrimination policies, access to high quality care a
far different set of media messages, personal contact that fosters more
empathy and the replacement of silence with dialogue. Above all, humanization
must be the goal. Getting young people engaged in the fight for human rights is
central to the entire effort each year that we maintain our current attitudes
and practices is another year of lost productivity wasted human potential and
unspeakable tragedy. It will require an unprecedented team effort to make a
difference. The knowledge is there and the pieces are in place. Do we have what
it takes to mount the fight? And that’s the last sentence of the book. So thanks
very much I’d like to get a little discussion going I really appreciate
your coming out tonight. [Applause]

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