1
00:00:00,000 --> 00:00:06,160
So, good morning. Welcome to the Bay Area Lecture series. I just want to do a quick reminder.

2
00:00:06,160 --> 00:00:10,800
The goals of this series are twofold. One is to highlight local conditions, researchers,

3
00:00:10,800 --> 00:00:16,520
advocates, and policymakers. But also just as importantly, to explore how issues of structural

4
00:00:16,520 --> 00:00:23,720
bias and social justice cut across systems of care. It is my absolute pleasure to introduce

5
00:00:23,720 --> 00:00:29,240
to you, Dina Tyler. Dina is a founding member of the Oakland Prevention Recovery and Early

6
00:00:29,240 --> 00:00:34,720
Psychosis or PREP team. That's how I met her. She's also a co-founder of the Bay Area

7
00:00:34,720 --> 00:00:40,640
Mandala Project and the Bay Area Hearing Voices Network. When I first met Dina at Oakland

8
00:00:40,640 --> 00:00:45,760
PREP, she immediately stood out to me for her enthusiasm and positive regard for all. But

9
00:00:45,760 --> 00:00:51,400
more importantly, her ability to smoothly move between inter-subjective, dyadic perspectives

10
00:00:51,400 --> 00:00:56,560
and logical, incisive arguments for system change. The only other thing I will say in

11
00:00:56,560 --> 00:01:01,400
introduction is just to remind us, pertinent to the topic of this talk, that despite the

12
00:01:01,400 --> 00:01:06,200
best data we have, recovery rates for people with schizophrenia have not improved since the

13
00:01:06,200 --> 00:01:13,120
1950s. So, welcome, Dina. I look forward to what you have to say. Thank you.

14
00:01:13,120 --> 00:01:22,440
Hi, everyone. And thank you so much, Damian and Dina, for inviting me. It's really an

15
00:01:22,440 --> 00:01:30,080
honor and I appreciate you, Damians, for your open-mindedness and your dedication to improving

16
00:01:30,080 --> 00:01:37,760
treatment for people. I think I am the first person with lived experience to speak at the UCSF

17
00:01:37,760 --> 00:01:44,900
ground grounds. It's an honor, if not a bit, uncomfortable. Because of the big question

18
00:01:44,900 --> 00:01:53,900
mark, can a psych survivor like me have an impact on a room full of psychiatrists, especially

19
00:01:53,900 --> 00:01:59,980
around the topic of critical psychiatry? I struggled with whether I should try to fit myself

20
00:01:59,980 --> 00:02:05,860
into your world and the ground grounds talks that you're used to, but that's not really

21
00:02:05,860 --> 00:02:12,620
the point here. It's to try to bring you into my world, into my perspective. And even

22
00:02:12,620 --> 00:02:19,100
if I don't, or I end up looking like the fool, I am grateful for the opportunity to try.

23
00:02:19,100 --> 00:02:26,220
So, I'm going to take about 55 minutes to present and then give some time for questions.

24
00:02:26,220 --> 00:02:31,820
I'm also happy for any follow-up questions. You can just go to dinatyler.com and email

25
00:02:31,820 --> 00:02:36,140
me there. It's not my first time speaking at a ground

26
00:02:36,140 --> 00:02:43,900
grounds. The first time I was actually a patient at the UCSD outpatient mental health clinic,

27
00:02:43,900 --> 00:02:51,420
the GIFRID clinic. And I was trying to demand that my treatment team remove my diagnoses.

28
00:02:51,420 --> 00:02:57,380
I was very vocal about my disagreement. And so they said I could come to ground rounds

29
00:02:57,380 --> 00:03:03,580
and plead my case. But I'll circle back to this later.

30
00:03:03,580 --> 00:03:12,940
I have been given six different diagnoses in my life. I have been hospitalized involuntarily.

31
00:03:12,940 --> 00:03:18,860
I have been prescribed so many different psychiatric drugs and at one point was even on a cocktail

32
00:03:18,860 --> 00:03:24,940
of seven meds. Five psych drugs plus two others for the side effects of caused by the other

33
00:03:24,940 --> 00:03:31,180
five. When the doctors started discussing whether I had schizophrenia or schizophrenia effective

34
00:03:31,180 --> 00:03:38,060
disorder, I started to see things were not headed in a good direction for my life and I decided

35
00:03:38,060 --> 00:03:44,540
to make my exit from the mental health system. I still have experiences that would be labeled

36
00:03:44,540 --> 00:03:53,180
as psychosis. But today I am a counselor with individual and family clients from around the world.

37
00:03:53,180 --> 00:03:59,100
I've also consulted with psychiatrists and psychologists, have done trainings for clinicians,

38
00:03:59,100 --> 00:04:04,700
nurses and doctors, as well as working in San Francisco, Alameda and San Mateo counties,

39
00:04:04,700 --> 00:04:11,020
developing and supervising a few different peer specialist programs. I don't take medication

40
00:04:11,020 --> 00:04:16,940
and haven't taken medication for 19 years. I graduated UC Berkeley with highest honors.

41
00:04:16,940 --> 00:04:23,420
I won the peer specialist of the year award in 2015 from the National Council for Behavioral Health.

42
00:04:25,500 --> 00:04:31,260
I've been working with the Mad Movement of Psychiatric Survivor Advocates and Critical

43
00:04:31,260 --> 00:04:37,420
Psychiatry Movement for more than 15 years and was a founder of Bay Area Hearing Voices,

44
00:04:37,420 --> 00:04:42,940
Bay Area Mandala Project, Organizer of Mad Camp. And these are just a few of the projects I have

45
00:04:42,940 --> 00:04:49,740
been involved in. I also offer breath work sessions and retreats for providers and family members

46
00:04:49,740 --> 00:04:53,100
who want to better understand how to hold space for psychosis.

47
00:04:53,260 --> 00:05:03,260
I have been on all sides of the psychiatric system and am friends with so many people who work

48
00:05:03,260 --> 00:05:10,460
in this system. And I personally know how many caring and credible people have taken out

49
00:05:10,460 --> 00:05:15,820
huge student loans because they truly want to help people with through this profession.

50
00:05:17,420 --> 00:05:22,860
My talk today is pointing out the problems with the design, not the people.

51
00:05:22,860 --> 00:05:34,060
I was and still would be non-compliant. I've spent my life creating compassionate alternatives

52
00:05:34,060 --> 00:05:40,220
to the traditional mental health system because my hospitalization was really bad.

53
00:05:42,140 --> 00:05:47,900
I would never, ever want to seek help in a psychiatric hospital ever again.

54
00:05:47,900 --> 00:05:56,860
I've seen over and over that what happened to me happens again and again and is completely normal

55
00:05:56,860 --> 00:06:05,900
and common. Even today, right now, there are people being traumatized in psychiatric hospitals

56
00:06:05,900 --> 00:06:12,940
right here in the Bay Area. I know because I've talked with many patients, families, and advocates

57
00:06:12,940 --> 00:06:21,980
in the area for years. So this isn't just a dinotylar story. This isn't just a plea from my perspective.

58
00:06:21,980 --> 00:06:31,100
This is a story of many, many patients and the perspective of an international movement of patients,

59
00:06:31,100 --> 00:06:37,500
families, clinicians, researchers, legal advocates, and disability rights activists.

60
00:06:37,500 --> 00:06:46,780
This is a story of normalized violence and human rights violations and a plea for how we can all

61
00:06:46,780 --> 00:06:56,620
choose to no longer participate in it. While I will not go into graphic detail,

62
00:06:57,820 --> 00:07:02,060
I will be addressing some things in my talk today about sexual assault and trauma.

63
00:07:02,060 --> 00:07:07,100
I realize not everyone chooses to hear things that could be potentially triggering.

64
00:07:07,100 --> 00:07:13,820
And you do have a choice here to leave or listen to this talk at a future time when you feel ready.

65
00:07:13,820 --> 00:07:22,060
However, I also want to invite all those that are in the mental health profession to deeply work

66
00:07:22,060 --> 00:07:29,580
on what triggers you in order to be the ones who can really hold hearing the traumatic experiences

67
00:07:29,580 --> 00:07:36,940
of those you encounter. If something I talk about today is upsetting to you, please take extra

68
00:07:36,940 --> 00:07:43,740
attention to nurture yourself and hold that part of you with a lot of compassion for the wound that is there.

69
00:07:45,980 --> 00:07:52,780
To understand my perspective, there are a few things about my life that are important to see the

70
00:07:52,780 --> 00:07:59,900
bigger picture. And while there are so many parts of my story to share and you can find more on my

71
00:07:59,900 --> 00:08:08,620
website or just email me to ask, I specifically want to focus today on what might make someone non-compliant

72
00:08:08,620 --> 00:08:15,180
or reluctant to seek traditional mental health services. And I will use my own story as an example.

73
00:08:15,180 --> 00:08:25,660
I've heard voices and seen visions ever since I was a young child. A lot of times the voices are a

74
00:08:25,660 --> 00:08:31,580
relentless chatter of conversations like being in the middle of a busy restaurant. I've had a few

75
00:08:31,580 --> 00:08:37,900
voices that terrify me with their criticisms and yelling. But I've also had voices that were

76
00:08:37,900 --> 00:08:44,780
super helpful and give me reminders and guidance and truly helped me get to where I am today.

77
00:08:44,780 --> 00:08:53,260
In school, sometimes the voices would help me out on tests. But they also made it hard to concentrate.

78
00:08:53,260 --> 00:08:59,500
I didn't tell any teachers about hearing voices because back then I didn't think it was abnormal.

79
00:08:59,500 --> 00:09:05,740
But since I had issues with concentration in high school, I was diagnosed with attention deficit

80
00:09:05,740 --> 00:09:12,060
disorder and prescribed stimulants. The stimulants affected my sleep and appetite where I felt I needed

81
00:09:12,060 --> 00:09:18,940
less of both. I began having a difficult time during my first two years of college and started

82
00:09:18,940 --> 00:09:25,420
having panic attacks and was crying a lot. I was diagnosed with severe depression and anxiety and

83
00:09:25,420 --> 00:09:31,580
started on a journey of different benzodiazepines and antidepressants while maintained on Adderall.

84
00:09:34,140 --> 00:09:40,860
Right before I started my third year as an undergraduate transfer to UC Berkeley while couch surfing

85
00:09:40,860 --> 00:09:49,500
and trying to find my own apartment, I was drugged with Rohitnaul in rate. I did not have anyone I could

86
00:09:49,500 --> 00:09:56,860
process this with and instead tried to bury it while I started my rigorous academic schedule.

87
00:09:58,380 --> 00:10:05,580
By my second semester, I was lost in disturbing and overwhelming voices and would slip into periods

88
00:10:05,580 --> 00:10:14,460
of dissociation. I was seeing visions of an echo apocalyptic future world where inflation was out

89
00:10:14,460 --> 00:10:22,060
of control. Gas prices were soaring. People can travel very far by car and so motorcycles were

90
00:10:22,060 --> 00:10:30,300
economically valuable. In this vision, I'm riding on the back of the motorcycle, really scared

91
00:10:30,300 --> 00:10:39,100
while people are trying to pull me off and steal the bike. I was horrified by the look in their eyes

92
00:10:39,100 --> 00:10:47,500
when a human has lost their humanity to the point that they care more about an object than a human life.

93
00:10:49,900 --> 00:10:57,580
This vision deeply affected me. I wasn't bathing, eating, and was falling behind in my classes.

94
00:10:57,580 --> 00:11:06,780
Even though I had never learned how to ride a bicycle, I bought a Vespa. It didn't make much sense

95
00:11:06,780 --> 00:11:12,940
to my parents and my mom drove up from San Diego and had me withdraw from school on medical leave.

96
00:11:14,220 --> 00:11:20,460
I was diagnosed with psychosis, NOS, not otherwise specified, and put on antipsychotics.

97
00:11:20,460 --> 00:11:26,380
I returned home to San Diego and my parents put me in a partial hospitalization program.

98
00:11:26,380 --> 00:11:33,260
In the year leading up to this, I had felt that there would be an attack in New York on Y2K

99
00:11:33,260 --> 00:11:39,100
and that I needed to convince everyone I knew to stay out of New York on New Year's Eve.

100
00:11:39,980 --> 00:11:44,780
This was fueled by no-strudamus predictions I encountered as a child.

101
00:11:44,780 --> 00:11:51,340
I was convinced that in order to avoid the horrific future I had seen in my visions,

102
00:11:51,340 --> 00:11:58,860
George Bush could not be elected in the year 2000, and I instead needed to get everyone I knew

103
00:11:58,860 --> 00:12:06,300
to vote for Nader. Why Y2K came and went and there was no attack?

104
00:12:08,220 --> 00:12:12,460
In the months that followed, I adjusted to the idea that I was wrong,

105
00:12:12,460 --> 00:12:22,700
but I also felt a bit baffled. I was so wrong that now I was actually seen as psychotic,

106
00:12:22,700 --> 00:12:32,540
seriously mentally ill. I lost countless friends because of stigma, and my family members all treated me

107
00:12:32,540 --> 00:12:40,220
differently. Embarrassed, ashamed, and kind of hopeless, I decided my antidepressant

108
00:12:40,220 --> 00:12:43,900
effects were not helping me feel better, so I stopped it cold turkey.

109
00:12:43,900 --> 00:12:53,180
A few weeks later, I started feeling better. A whole lot better.

110
00:12:53,180 --> 00:13:00,140
I was having vivid dreams and dreamt about getting tattoos on my arms and woke up the next day and

111
00:13:00,140 --> 00:13:07,420
got them. I was feeling inspired and hopeful and creative. It also became harder to fall asleep,

112
00:13:07,420 --> 00:13:14,220
but withdrawal of effects are triggered in insomnia, and I was up for five days straight.

113
00:13:14,220 --> 00:13:24,940
On that fifth day of not sleeping, I had a profound experience. I discovered the meaning of life.

114
00:13:26,380 --> 00:13:33,580
I joined philosophers, poets, psychologists, writers, thinkers from history, and asking the big questions

115
00:13:33,580 --> 00:13:40,620
of existence and coming up with an answer that made sense to me. Like an Old Testament prophet,

116
00:13:40,620 --> 00:13:47,020
I was speaking to what I called celestial beings and being given messages from a higher consciousness.

117
00:13:47,020 --> 00:13:54,380
These beings were watching what was happening among humans on this planet, and they had some very

118
00:13:54,380 --> 00:14:01,980
important things about our existence they wanted me to communicate. Like poets, philosophers,

119
00:14:01,980 --> 00:14:07,900
prophets, and religious leaders throughout time, I passionately followed this destiny.

120
00:14:07,900 --> 00:14:16,460
So on the fifth day without sleep, I started calling everyone I knew and told them I had discovered

121
00:14:16,460 --> 00:14:23,660
the meaning of life. I was sharing what I thought was the very clear pathway for humans that I was given.

122
00:14:23,660 --> 00:14:31,020
Part of that vision was that I would become the first female president of the United States,

123
00:14:31,020 --> 00:14:39,180
where in the future I would run against Chelsea Clinton, but that I would win. Now this was back in the year 2000,

124
00:14:39,180 --> 00:14:47,180
way before Hillary ever ran for president, and to everyone else, I was just this shy, awkward,

125
00:14:47,180 --> 00:14:55,180
boss girl who worked at a record store. I was nowhere near the person you see standing before you today.

126
00:14:55,180 --> 00:15:04,700
I had always been an extremely quiet person, not a hint of the ideal presidential candidate,

127
00:15:04,700 --> 00:15:12,940
but suddenly I was animated, expressive, broke out of my shell, and was saying a lot.

128
00:15:14,140 --> 00:15:21,900
So to those around me, I was not acting normal. I just shifted out of my familiar personality and

129
00:15:21,900 --> 00:15:29,740
started acting in a really animated way. Today, it's actually quite normal for me to act in an

130
00:15:29,740 --> 00:15:37,100
animated and intensely passionate way at times. But back then, however, if I had been surrounded by

131
00:15:37,100 --> 00:15:42,780
people who can help guide me through the withdrawal and teach me how to prioritize getting sleep,

132
00:15:43,740 --> 00:15:50,460
by people who are curious instead of afraid, I may have been able to get through this without the

133
00:15:50,460 --> 00:15:56,460
need for hospitalization. That maybe if I and the people around me,

134
00:15:56,460 --> 00:16:03,740
had been, could have been helped to see that there was some significance in what I was proclaiming,

135
00:16:03,740 --> 00:16:09,100
that I could actually do something meaningful in the world, something with impact,

136
00:16:10,060 --> 00:16:17,500
something with power to affect change. Was that so crazy? Or did it come true?

137
00:16:17,500 --> 00:16:28,540
I had what was labeled as a manic episode, more evidence for my illness. Yes, I have been up

138
00:16:28,540 --> 00:16:36,860
for five days without sleep. I guarantee you, anyone in this room who stays up long enough will

139
00:16:36,860 --> 00:16:43,500
go psychotic and manic. It is not an illness. It is a stress response.

140
00:16:43,500 --> 00:16:51,180
Maybe they should have asked me why I couldn't sleep. Maybe they should have helped me understand

141
00:16:51,180 --> 00:16:55,180
withdrawal effects and learn how to take better care of my sleep.

142
00:16:55,180 --> 00:17:02,860
So I had this vision. It would have been incredible if I had been supported.

143
00:17:03,740 --> 00:17:09,660
But instead it became the evidence that I was ill and needed to be hospitalized.

144
00:17:09,660 --> 00:17:19,020
I wasn't suicidal. I wasn't starting fires. I wasn't threatening to kill anyone. I wasn't committing

145
00:17:19,020 --> 00:17:25,420
crimes. I got really excited about something I figured out. That was it.

146
00:17:25,420 --> 00:17:33,020
My mom convinced me to go to an inpatient unit saying that it would be a safe place for me to get

147
00:17:33,020 --> 00:17:40,220
some sleep. After so many days without sleep, I knew I needed it. And so I agreed to go.

148
00:17:40,220 --> 00:17:49,420
I was diagnosed with bipolar and psychosis, NOS. They wanted to add a mood stabilizer and another

149
00:17:49,420 --> 00:17:59,580
anti-psychotic. I initially resisted. I didn't want any more medications. I was tired of so many

150
00:17:59,580 --> 00:18:08,220
medications. Tired of the trial and error. I didn't like how they made me feel. They certainly hadn't

151
00:18:08,220 --> 00:18:16,540
helped improve my life. I only kept getting more diagnoses, higher dosages, larger cocktails of

152
00:18:16,540 --> 00:18:24,620
psychiatric drugs. Even though I went involuntarily, they changed it to involuntary.

153
00:18:25,260 --> 00:18:37,500
Within the first few days of inpatient, I started to see how little things fit an overall pattern

154
00:18:37,500 --> 00:18:45,580
of dehumanizing treatment. I was denied access to my journal and a pencil until I agreed to take

155
00:18:45,580 --> 00:18:53,260
the medications. I begged for my hair products that helped me avoid matted hair, but was told no.

156
00:18:53,260 --> 00:19:02,060
When I complained that another patient was stealing my underwear, and I didn't feel safe because I

157
00:19:02,060 --> 00:19:11,500
couldn't lock my door, I was told to hide them better. I was told that they couldn't give me the

158
00:19:11,500 --> 00:19:18,220
A&D appointment. I was instructed to use on my fresh tattoos so that they'd heal properly.

159
00:19:19,340 --> 00:19:28,940
Their reason, I might try to drink it and kill myself. I thought I could reason with the staff to

160
00:19:28,940 --> 00:19:36,300
listen to me. Turned out, I couldn't. There was a 40-year-old woman who took pity on me.

161
00:19:36,300 --> 00:19:43,100
She had been hospitalized many times and showed me the ropes. She helped me understand what to do and

162
00:19:43,100 --> 00:19:51,420
what not to do. Just keep my head down. Don't try to argue with the staff that only makes it worse.

163
00:19:51,420 --> 00:19:58,380
Just take the meds and try to make the best out of your time, keep there until they let you go.

164
00:19:58,380 --> 00:20:06,700
I learned that if you take the medication, they are more likely to let you go. I learned to submit.

165
00:20:07,980 --> 00:20:16,300
I gained 35 pounds in three weeks on the new combination of meds. People visited me less and less.

166
00:20:16,300 --> 00:20:20,780
I tried to just surrender to my circumstances.

167
00:20:20,780 --> 00:20:28,700
Since there was not much to occupy myself with, just the loud TV in the common room,

168
00:20:28,700 --> 00:20:36,540
another patient in his 50s told me he could show me some of the handouts he had gotten when he was in

169
00:20:36,540 --> 00:20:43,500
an outpatient program and to come to his room and he will give them to me. I naively followed him

170
00:20:43,500 --> 00:20:51,020
into his room and he immediately forced himself on me. Because I was so heavily medicated,

171
00:20:51,020 --> 00:20:58,220
because I had a history of dissociating, I wanted to scream and fight back, but I couldn't.

172
00:20:58,220 --> 00:21:04,860
It seemed like forever before the staff finally came in and pulled him off me.

173
00:21:06,220 --> 00:21:12,220
But the staff were really rough with me. They looked mad and they violently threw me into my room.

174
00:21:12,220 --> 00:21:20,300
I didn't understand. I thought they were saving me, but they looked disappointed.

175
00:21:20,300 --> 00:21:31,260
They told me what happened was a symptom of my bipolar, that I was hypersexual.

176
00:21:33,180 --> 00:21:41,020
How could they not see that I didn't want this to happen to me? That night, that man was not

177
00:21:41,020 --> 00:21:48,700
removed from the floor. His room was right across the hallway from mine. I was scared that he could come

178
00:21:48,700 --> 00:21:56,460
into my room at any time. I couldn't lock my door, so I didn't sleep at all that night and came

179
00:21:56,460 --> 00:22:03,980
up with a plan of how to get transferred off that ward. The next morning, I told the staff that I tried

180
00:22:03,980 --> 00:22:11,580
to kill myself. They asked me how and I quickly had to come up with an answer. I lied and said

181
00:22:11,580 --> 00:22:20,540
the bed sheets. They took me off that ward and onto the suicide watch ward. But before I could enter,

182
00:22:23,740 --> 00:22:30,700
before I could enter, they said they had to do a strip search to make sure I didn't have anything

183
00:22:30,700 --> 00:22:39,900
on me that could be used to kill myself. I had just been raped and now they want to strip search me.

184
00:22:39,900 --> 00:22:52,380
I wanted to yell. I have been here three weeks. What could I possibly have on me that you don't

185
00:22:52,380 --> 00:23:03,900
already know that I have? All I have are these pajamas. But I couldn't yell at them. I had to submit.

186
00:23:03,900 --> 00:23:12,940
I knew there is no way I am actually going to get helped there. I wanted to get out.

187
00:23:12,940 --> 00:23:20,700
Three days later, I was told that my insurance had run out and I was being discharged.

188
00:23:21,580 --> 00:23:32,620
To say the very least that I have been broken or more aptly heartbroken, that I couldn't trust the

189
00:23:32,620 --> 00:23:42,220
people that were supposed to help me. What kind of training or clinical gaze makes people lose

190
00:23:42,220 --> 00:23:51,820
their humanity or even common sense so much that they witnessed a rape and think I am so out of my

191
00:23:51,820 --> 00:24:02,540
mind that I somehow wanted this to happen to me. That a 22 year old was trying to seduce a male patient

192
00:24:02,540 --> 00:24:13,740
in his 50s in a psychiatric hospital while heavily medicated. After experiencing such dehumanizing

193
00:24:13,740 --> 00:24:21,420
treatment, there is no amount of convincing or coercion that could ever make me want to go back

194
00:24:21,420 --> 00:24:29,500
voluntarily to a psychiatric hospital. For years, I felt the threat from family members and treatment

195
00:24:29,500 --> 00:24:36,460
providers that I would be re-hospitalized if I came off my medications or for any other number of reasons.

196
00:24:36,460 --> 00:24:43,340
Since there are so many of us who would never want to be involuntarily hospitalized,

197
00:24:43,340 --> 00:24:48,460
I have spent my life trying to create alternatives to any forced treatment.

198
00:24:48,460 --> 00:24:55,580
There is a problem with the design of what we call care.

199
00:24:57,340 --> 00:25:03,900
We always need to look at the design when we're not getting the outcomes we want and refrain from

200
00:25:03,900 --> 00:25:12,140
blaming it on the patient when they refuse our services. We must consider the possibility of

201
00:25:12,140 --> 00:25:16,780
eye-atrogenic harm, harm that is caused by the treatment.

202
00:25:16,780 --> 00:25:24,940
My refusal to seek treatment was called a lack of insight.

203
00:25:26,540 --> 00:25:32,700
This is an incredibly dangerous and offensive clinical trope that has been gaining traction over

204
00:25:32,700 --> 00:25:40,700
the last decade. There is even an unproven myth often presented as fact similar to the rise

205
00:25:40,700 --> 00:25:48,700
and fall of the chemical imbalance theory called anosythnosia, something that is studied in brain

206
00:25:48,700 --> 00:25:57,340
injuries that is being falsely attributed to mental illness. That someone lacks the insight into

207
00:25:57,340 --> 00:26:05,660
their condition, that they are so ill that they do not know that they are ill, and that this is

208
00:26:05,660 --> 00:26:11,100
used as an explanation for why people refuse medications and conventional treatments.

209
00:26:13,180 --> 00:26:20,540
This idea of lack of insight is dangerous because it assumes that people do not know what is best for

210
00:26:20,540 --> 00:26:26,940
them and that they can be ignored and another person gets to decide what is best for that person.

211
00:26:26,940 --> 00:26:38,620
Anosythnosia is a loophole, a trap door, an exception that lets in one group of powerful people

212
00:26:38,620 --> 00:26:49,740
to step on a group of vulnerable people. What is it truly? The idea that a person has a lack of

213
00:26:49,740 --> 00:26:57,580
insight arises between two people who are having a disagreement, two different perspectives,

214
00:26:57,580 --> 00:27:08,220
different ideas about what is and is not helpful. Humans have had disagreements over belief systems

215
00:27:08,220 --> 00:27:15,420
for a very long time. If we look at how opposing belief systems have contributed to the amount of

216
00:27:15,420 --> 00:27:21,420
violence and oppression from arguments at a family dinner table to countless genocides and

217
00:27:21,420 --> 00:27:29,020
brutalities on this planet, we know that there is no easy solution to proving who holds the truth.

218
00:27:31,820 --> 00:27:41,020
Psychosis is a disagreement over what is reality. Psychosis is often a disagreement over belief systems.

219
00:27:41,020 --> 00:27:51,260
If you tell the person that what they are experiencing is not real, like hearing voices is just an

220
00:27:51,260 --> 00:28:01,180
auditory hallucination, it doesn't make their experience go away. You just become a person they cannot

221
00:28:01,180 --> 00:28:08,780
talk to about what is really going on. It simply leaves them to be alone with their experience.

222
00:28:08,780 --> 00:28:16,860
By a show of hands, has anyone here ever had a song stuck in your head?

223
00:28:16,860 --> 00:28:28,460
Well, that's an auditory experience that no one else can hear. We all can experience some degree

224
00:28:28,460 --> 00:28:39,260
of auditory hallucination. The research by Roam and Escher that spawned the International Hearing

225
00:28:39,260 --> 00:28:46,700
Voices movement showed that many people who hear voices are managing the voice hearing experience

226
00:28:46,700 --> 00:28:54,060
without any need for psychiatric interventions. And that hearing voices is not a sign that there is

227
00:28:54,060 --> 00:29:03,100
something inherently wrong with you that needs to be eradicated. And actually across different cultures,

228
00:29:03,100 --> 00:29:10,140
voice hearing can be seen as a normal part of human experience. Here is a fantastic study of the

229
00:29:10,140 --> 00:29:16,860
Maori Indigenous people of New Zealand and how what gets labeled as psychosis by Western doctors

230
00:29:17,580 --> 00:29:26,060
is actually understood and held well within their spiritual beliefs. I also recommend the

231
00:29:26,060 --> 00:29:29,340
documentary "Praisey Wise" for anyone who hasn't seen it.

232
00:29:29,340 --> 00:29:39,580
Hortney Harding's landmark study of de-institutionalization and recovery from schizophrenia

233
00:29:39,580 --> 00:29:50,460
was a 32-year longitudinal study of 269 back-ward patients released from the Vermont State hospital.

234
00:29:50,460 --> 00:30:02,220
They were considered the most severe of all the patients. Her study showed that half to two-thirds

235
00:30:02,220 --> 00:30:15,820
of people recovered or improved significantly. In a paper in 1994, Harding combats the seven myths

236
00:30:15,820 --> 00:30:23,580
about schizophrenia, including the myth that once a schizophrenic always a schizophrenic

237
00:30:24,860 --> 00:30:32,860
and comparing longitudinal studies from around the world. She states that "the longer investigators

238
00:30:32,860 --> 00:30:39,820
followed and identified intact cohort, rather programs were in or out of treatment,

239
00:30:39,820 --> 00:30:45,260
the more pronounced the picture of increasing heterogeneity and improvement in function."

240
00:30:45,260 --> 00:30:52,220
These studies have consistently found that half to two-thirds of patients significantly

241
00:30:52,220 --> 00:30:57,420
improved or recovered, including some cohorts of very chronic cases.

242
00:30:57,420 --> 00:31:04,460
The universal criteria for recovery, what Harding used in comparing these studies,

243
00:31:04,460 --> 00:31:13,580
have been defined as "no current signs and symptoms of any mental illness, no current medications,

244
00:31:13,580 --> 00:31:19,820
working, relating well to friends and family, integrated into the community,

245
00:31:20,460 --> 00:31:28,620
and behaving in such a way as to not being able to detect having ever been hospitalized for any kind

246
00:31:28,620 --> 00:31:38,300
of psychiatric problems." And with respect to another myth that patients must be on medications

247
00:31:38,300 --> 00:31:44,460
all of their lives, she states "when analyzing the results from the long-term studies,

248
00:31:44,460 --> 00:31:51,340
it was clear that a surprising number, at least 25 to 50% were completely off their medications,

249
00:31:51,340 --> 00:31:57,020
suffered no further signs or symptoms of schizophrenia, and were functioning well."

250
00:31:57,020 --> 00:32:04,620
The authors go on to state that "the long-term studies found that more subjects than not,

251
00:32:04,620 --> 00:32:12,620
eventually discovered through either trial, error or time, that they were able to function

252
00:32:12,620 --> 00:32:21,340
without medication later on." I do wonder how high these percentages could be if people were

253
00:32:21,340 --> 00:32:29,660
actually supported in withdrawing from psychiatric drugs. Even though this paper came out

254
00:32:29,660 --> 00:32:40,460
almost 30 years ago, these myths still persist today. To many people, those myths are still forced

255
00:32:40,460 --> 00:32:54,300
upon them as reality. What are we doing that might be preventing recovery? That might even be causing harm?

256
00:32:54,300 --> 00:33:08,780
As Harding's work suggests, and a lot of other studies, even time people do better.

257
00:33:09,260 --> 00:33:15,580
Change people's expectations that their needs to be a quick fix.

258
00:33:15,580 --> 00:33:26,220
A quick fix might have worse outcomes for the long-term. People do not always need to be

259
00:33:26,220 --> 00:33:31,980
medicated right away, and they do not need to remain high dosages for the long-term.

260
00:33:33,420 --> 00:33:39,420
Medication can be helpful to some people. I work with many people who decide to take medication.

261
00:33:39,420 --> 00:33:49,740
As prescribers, though, please consider that even if your intention is to put a person on something

262
00:33:49,740 --> 00:33:56,300
only for a short period of time, if you are not also the one to help them come off,

263
00:33:56,300 --> 00:34:02,940
then they may end up never finding another psychiatrist who will let them withdraw.

264
00:34:03,420 --> 00:34:12,140
People can and do withdrawal from medications. They just might need support for how to do it with the

265
00:34:12,140 --> 00:34:19,740
least amount of harm. Whether to take or not take medications should always be a choice,

266
00:34:19,740 --> 00:34:28,060
and that in order to uphold true informed consent, other options must also be presented,

267
00:34:28,940 --> 00:34:36,700
as well as educating people that withdrawal can be very challenging. People need this information

268
00:34:36,700 --> 00:34:44,460
to make the best decisions for themselves. It is unethical to present only one option as truth.

269
00:34:44,460 --> 00:34:55,180
That's actually coercion. That medication is the only path is false. This is not the only way

270
00:34:55,180 --> 00:35:04,940
that people can and do get better. I never went back to the psychiatrist who hospitalized me.

271
00:35:04,940 --> 00:35:15,260
He has no idea how I am doing now, or how my life has turned out. He has no idea that I came off

272
00:35:15,260 --> 00:35:22,860
all psychiatric drugs and I'm doing well. Most psychiatrists don't see the long-term picture

273
00:35:22,860 --> 00:35:29,500
that people can do well off of medications. But for those psychiatrists that do understand this,

274
00:35:29,500 --> 00:35:36,460
there is a bit of a gold rush right now in withdrawal as those psychiatrists who specialize

275
00:35:36,460 --> 00:35:42,940
in deep prescribing take advantage of people's desperation by charging higher niche rates.

276
00:35:42,940 --> 00:35:50,380
As a pharmaceutical industry has no financial incentive to research how people can better

277
00:35:50,380 --> 00:35:57,420
discontinue taking psychiatric drugs. Most of the knowledge base has come from psych survivors.

278
00:35:57,420 --> 00:36:01,820
Those of us who have actually successfully gone through withdrawal.

279
00:36:01,820 --> 00:36:10,780
There are a lot of free resources for people because the field of psychiatry has traditionally

280
00:36:10,780 --> 00:36:16,700
not supported people in their choice to no longer take medications. So people have had to figure

281
00:36:16,700 --> 00:36:23,900
out how to do it on their own. Really understanding withdrawal and customizing it

282
00:36:23,900 --> 00:36:32,940
is important to help avoid common mistakes even by well-meaning prescribers of tapering too fast

283
00:36:32,940 --> 00:36:41,820
or too slow. Here are some valuable resources to help educate. And if you find them helpful to your

284
00:36:41,820 --> 00:36:49,740
work, please give back to the psych survivors who created them. There are many people who come off

285
00:36:49,740 --> 00:36:55,180
because they want to undo the damage the field these drugs have caused them. And so I work alongside

286
00:36:55,180 --> 00:37:00,380
psychiatrists who do the deep prescribing and I work directly with the individuals to help them with

287
00:37:00,380 --> 00:37:07,020
everything else around withdrawal that the psychiatrist usually does not. Managing their sleep,

288
00:37:07,020 --> 00:37:12,300
the emotional aspect, repairing relationships, getting their feedback under them,

289
00:37:12,300 --> 00:37:20,460
as well as working through the feelings of anger at the years stolen away by psychiatric medications.

290
00:37:20,460 --> 00:37:27,500
I also help them and their support work, support network, understand non-med,

291
00:37:27,500 --> 00:37:34,300
non-hospital approaches for dealing with the crisis. So if things get rough, they have another plan.

292
00:37:36,700 --> 00:37:44,620
Every provider needs to recognize the potential for damage to a client's existing relationships

293
00:37:44,620 --> 00:37:54,940
when providers push supporters to force or coerce their loved one to agree to treatment they do not want.

294
00:37:54,940 --> 00:38:04,220
Many parents take follow the doctor's orders very, very seriously.

295
00:38:05,900 --> 00:38:15,100
This creates a contempt for disobedience and an incredibly painful power struggle that destroys

296
00:38:15,100 --> 00:38:23,420
many family relationships. Help should never come at the expense of existing support relationships.

297
00:38:23,420 --> 00:38:34,380
Providing non-hierarchical dialogues that avoid power struggles could dramatically change treatment

298
00:38:34,380 --> 00:38:40,140
instead. If you want to learn a bit more about this, look into the Open Dialogue approach.

299
00:38:40,140 --> 00:38:48,620
In Open Dialogue, the person who is at the center of concern, who in conventional approaches

300
00:38:48,620 --> 00:38:55,260
is normally told they have a lack of insight because of their diagnosis and is shut down and excluded

301
00:38:55,260 --> 00:39:03,580
from treatment team decisions. In Open Dialogue, that person is a necessary part of the conversation

302
00:39:03,580 --> 00:39:12,380
around decision-making, not to be forced or coerced, but to be listened to so that everyone can learn

303
00:39:12,380 --> 00:39:22,460
from their perspective. The provider who takes the time and makes the effort to help people

304
00:39:22,460 --> 00:39:30,380
communicate as equals instead of fighting out the power struggle over whose belief system is truth.

305
00:39:31,340 --> 00:39:34,620
Has the potential to create true healing.

306
00:39:34,620 --> 00:39:47,500
Why are those diagnosed with psychosis the most heavily medicated? Those hearing voices or seeing

307
00:39:47,500 --> 00:39:59,020
visions the most stigmatized, the most feared. Courtney Harding also discussed an idea called

308
00:39:59,020 --> 00:40:08,460
the clinician's illusion. The illusion occurs when clinicians repeatedly see the few most severely ill

309
00:40:08,460 --> 00:40:16,780
in their caseloads as typical. When in fact such patients represent a small proportion of the actual

310
00:40:16,780 --> 00:40:28,940
possible spectrum. Here's the full card. I illustrated by Pamela Coleman-Smith from the Smith

311
00:40:28,940 --> 00:40:37,980
Weight Tarot Deck. Upon first glance, we notice that this seemingly carefree person is on an adventure.

312
00:40:37,980 --> 00:40:45,500
So caught up in their own world that they do not see that they are about to step off a dangerous

313
00:40:45,500 --> 00:40:54,460
cliff and the dog barking to get their attention seems to go unnoticed. Thus the fool is seen as

314
00:40:54,460 --> 00:41:01,980
inexperienced naive and foolish. The fool has also been viewed as the wandering lunatic,

315
00:41:01,980 --> 00:41:09,660
the one who can't keep it together like everyone else. But the fool can be so much more.

316
00:41:09,660 --> 00:41:15,980
The fool can be the court jester who often speaks the unspeakable truth.

317
00:41:15,980 --> 00:41:21,820
The one who can get close enough to royalty to speak truth to power.

318
00:41:23,900 --> 00:41:30,780
The fool can also be the one with divine madness. The one whose messages disrupt the social order.

319
00:41:30,780 --> 00:41:40,380
The belief system of the majority. As with all tarot cards and I'll also add people for that matter,

320
00:41:40,380 --> 00:41:51,420
there are always more than one interpretation. See now us as outside observers can only see one

321
00:41:51,420 --> 00:42:01,580
tiny fraction of what is going on here. We only see this brief moment. We do not know for sure

322
00:42:01,580 --> 00:42:09,740
that he is actually in mid-step or that he is paused to reflect and take in his surroundings with all.

323
00:42:09,740 --> 00:42:17,580
We can actually cannot even be certain that there is a dangerous cliff in front of him.

324
00:42:18,620 --> 00:42:26,540
It could simply be a very safe step down to the next ledge. We do not know that before this moment,

325
00:42:26,540 --> 00:42:33,820
he wasn't actually keenly aware and knows exactly where he is headed next. We do not know his future.

326
00:42:33,820 --> 00:42:45,340
It could be that this folly is what initiates his growth and discovery. Maybe his fall doesn't mean death,

327
00:42:45,900 --> 00:42:55,660
or that something bad is about to happen. Maybe it is the start of his journey and that if he had been

328
00:42:55,660 --> 00:43:07,020
afraid of his next step, he would have missed his potential destiny. This is how we can hold crisis

329
00:43:07,020 --> 00:43:12,940
as a potentially transformative experience in the life of the person in front of us.

330
00:43:15,020 --> 00:43:22,700
There is always a possibility that it could provide some meaning and purpose to the person's life.

331
00:43:22,700 --> 00:43:31,180
Maybe even a spiritual awakening or that there could be much needed growth and learning

332
00:43:31,180 --> 00:43:34,380
that sparks a change in how they want to live their life.

333
00:43:34,380 --> 00:43:43,100
Growth is not usually a blissful experience. From the outside looking in,

334
00:43:43,740 --> 00:43:52,460
and even for the person going through it, it can look very painful. Of course, our first instinct

335
00:43:52,460 --> 00:44:00,940
is to try to stop the pain and discomfort at any cost. This is not always the best response

336
00:44:00,940 --> 00:44:09,260
for the long-term outcome. If we could instead adopt a treatment design that holds true to the words

337
00:44:09,260 --> 00:44:21,660
of Robert Frost, the best way out is always through. So what was the meaning of life that I discovered?

338
00:44:21,660 --> 00:44:30,460
What was it that I was telling everyone was a pathway forward for humans? What was so dangerous

339
00:44:30,460 --> 00:44:41,340
that I needed to be forcibly institutionalized? Simply, it was that we as humans have basic human

340
00:44:41,340 --> 00:44:49,980
needs, that these are food, water, shelter, yes, but we also have other basic human needs,

341
00:44:49,980 --> 00:44:58,860
that we need to have a sense of belonging, a sense of purpose, that we need to have love and

342
00:44:58,860 --> 00:45:08,220
attention and affection, that we need to have self-esteem, that our society is currently organized

343
00:45:08,220 --> 00:45:16,780
to deprive us of these basic human needs. That instead, we are taught to compete for survival,

344
00:45:16,780 --> 00:45:27,020
that we cannot be interdependent. That instead, if we could redesign society to understand

345
00:45:27,020 --> 00:45:33,420
that through mating, the basic needs of all people, that we could achieve our full potential as

346
00:45:33,420 --> 00:45:44,540
individuals and as a species, that the way forward is not through division. The way forward

347
00:45:44,540 --> 00:45:53,820
is a restoration of humanity. If you really ask those of us who are struck with,

348
00:45:53,820 --> 00:46:01,820
quote-unquote, "madness" about the content of our messages, there is often a common theme of

349
00:46:01,820 --> 00:46:10,620
somehow wanting to save the world, that those who are mad, may represent transcendence,

350
00:46:10,620 --> 00:46:19,020
being outside the social order and able to see beyond it. And it is not uncommon that the

351
00:46:19,020 --> 00:46:29,260
Savior is viewed first and foremost as a mad person or a fool. I like many people who go into the

352
00:46:29,260 --> 00:46:35,580
helping profession come to this work as a wounded healer, meaning that I have personal lived

353
00:46:35,580 --> 00:46:45,260
experiences that cannot be taught in an academic setting. It was by personally going through the

354
00:46:45,260 --> 00:46:51,580
mental health system that I learned what needed to change, that sparked my activism and ignited

355
00:46:51,580 --> 00:46:59,260
the fire for why I wanted to help others. I am not alone in this, there is a large international

356
00:46:59,260 --> 00:47:06,380
social movement of psychiatric survivors. People subjected to the human rights violations

357
00:47:06,380 --> 00:47:14,380
at the hands of the mental health system. This movement has had many different names,

358
00:47:14,380 --> 00:47:20,540
the consumer survivor ex-patient movement or CSX for short, the mad movement, the peer movement,

359
00:47:20,540 --> 00:47:26,780
the recovery movement, mad pride, or simply to many of us it's just called the movement.

360
00:47:26,780 --> 00:47:37,260
It has been co-opted, subdued, and perceived as a threat. We've been ignored or silenced because

361
00:47:37,260 --> 00:47:45,580
of our anger. Movement activists of the past were much more vocal in their anger and criticism

362
00:47:45,580 --> 00:47:54,220
of psychiatry. Protests at the APA, slogans like you bet your ass were paranoid,

363
00:47:54,220 --> 00:48:02,940
one only needs to look at the free online archives of madness network news to see how angry people

364
00:48:02,940 --> 00:48:13,820
have been for decades. Judy Chamberlain's book on our own is a foundational understanding of the

365
00:48:13,820 --> 00:48:20,380
psychiatric survivor movement and why people like me have been advocating for self-help and

366
00:48:20,380 --> 00:48:25,900
help that is designed and even delivered by those with personal lived experience.

367
00:48:27,260 --> 00:48:35,260
We have a level of empathy and shared understanding that can only be learned by going through it yourself.

368
00:48:35,260 --> 00:48:43,340
Years of activism to create alternatives like peer support, peer run drop-in centers,

369
00:48:43,340 --> 00:48:48,620
and peer rescues have been systematically underfunded or defunded completely.

370
00:48:48,620 --> 00:48:54,460
There have been longstanding tensions in the family member movement.

371
00:48:55,580 --> 00:49:03,660
Originally reformed, the family member movement formed as a response to psychiatry's initial

372
00:49:03,660 --> 00:49:10,620
theories of psychosis as being caused by the family as in the schizophrenic mother.

373
00:49:10,620 --> 00:49:18,620
The family member movement has often been deeply rooted in the medical model, embracing the idea

374
00:49:18,620 --> 00:49:25,980
that mental illness is biologically based. But this movement is run by the agendas of NAMI,

375
00:49:25,980 --> 00:49:31,260
the Treatment Advocacy Center, and historically funded by the pharmaceutical industry.

376
00:49:31,260 --> 00:49:41,020
The providers have historically also had their own differing perspectives. The medical model,

377
00:49:41,020 --> 00:49:48,140
the bioseclusocial model, the power threat meaning model, trauma, is it nature or nurture,

378
00:49:48,140 --> 00:49:57,420
is it body or mind? The providers have been aligning with the family members to force or coerce

379
00:49:57,420 --> 00:50:04,860
the patients to do what the providers think is a treatment pathway. The patients resist and are

380
00:50:04,860 --> 00:50:11,180
ignored or silenced. This makes the patients very angry, and then the family members and providers

381
00:50:11,180 --> 00:50:18,140
are offended, frustrated, and out of loss, and feel that force or coercion is the appropriate response.

382
00:50:18,140 --> 00:50:23,420
This is where we are at right now. Wow, what a mess.

383
00:50:23,420 --> 00:50:34,940
Right here in California, there have been some incredibly alarming trends to make force and coercion

384
00:50:34,940 --> 00:50:44,220
much easier. The recent expansion of the criteria for gravely disabled makes it easier to hospitalize

385
00:50:44,220 --> 00:50:56,140
more people against their will. The introduction of care courts allows for family members or even a

386
00:50:56,140 --> 00:51:07,020
roommate to petition the court to coerce someone with untreated psychosis into treatment through compulsion.

387
00:51:07,020 --> 00:51:22,700
Think about the impact. What people's lives are actually going to look like having to go through this

388
00:51:22,700 --> 00:51:23,180
process.

389
00:51:23,180 --> 00:51:37,100
On the about this coming March is Proposition 1. It looks like it will build in voluntary housing

390
00:51:37,100 --> 00:51:45,660
and more involuntary psychiatric beds by cutting voluntary community services like many peer run

391
00:51:45,660 --> 00:51:53,900
advocacy programs across the state. Many of us in the psychiatric survivor community are against

392
00:51:53,900 --> 00:52:02,620
Proposition 1. Putting people on a medication that makes them sleep 18 hours a day will not

393
00:52:02,620 --> 00:52:09,820
solve their poverty issues. It will just tranquilize them so that they are not outwardly angry about it.

394
00:52:11,660 --> 00:52:17,660
Sweeping the streets of homeless will not make housing more affordable in the Bay Area,

395
00:52:17,660 --> 00:52:28,860
or even prevent the new class of working homeless. These are not solutions. They're not even

396
00:52:28,860 --> 00:52:38,140
band-aids. They are simply out of sight, out of mind. The idea that Prop 1 will help the homeless

397
00:52:38,140 --> 00:52:46,220
is a fantasy. It will create more harm. I feel like I am once again trying to sound the alarm.

398
00:52:46,220 --> 00:52:50,460
This time I really hope people are listening.

399
00:52:50,460 --> 00:53:03,820
I think the one place that we all agree. Family members, psych survivors, most every provider I

400
00:53:03,820 --> 00:53:12,300
have ever talked to, and even those who are compliant with treatment, the one place we definitely

401
00:53:12,300 --> 00:53:22,940
all agree is that the system is problematic. We have not exhausted the alternatives that we can

402
00:53:22,940 --> 00:53:30,940
develop. I'm not saying we don't need places for people to go. I 100% support voluntary sleep centers,

403
00:53:31,740 --> 00:53:37,180
psychosis sanctuaries, like soteria house diatases, I-Word, the RD-Ling houses,

404
00:53:37,180 --> 00:53:44,380
approaches for changing one's relationship to distressing voices from the Hearing Voices Network.

405
00:53:44,380 --> 00:53:51,900
Allow for freak out rooms. A place where it is okay to yell and express anger and you won't get

406
00:53:51,900 --> 00:54:01,340
restrained or injected and put in solitary or jail. Med-free hospitals or other community-based

407
00:54:01,340 --> 00:54:09,980
programs that can support withdrawal. Communities that understand crisis where a person can be

408
00:54:09,980 --> 00:54:16,860
supported to give them time to get through it. We could design any of these things.

409
00:54:16,860 --> 00:54:24,940
We need to ask people why they are non-compliant. We have to acknowledge the anger of those that

410
00:54:24,940 --> 00:54:36,060
feel harmed by this system. It is not a lack of insight. It is trauma. Trauma caused by the treatment.

411
00:54:36,060 --> 00:54:44,700
Force or coercion is not the answer, but the answer is understanding why people feel this way

412
00:54:44,700 --> 00:54:53,100
and designing a different kind of care. So I'll circle back to that UCSD brand rounds I attended.

413
00:54:53,100 --> 00:54:58,220
I did my best to explain to them what I thought was going on with me. What I had discovered was

414
00:54:58,220 --> 00:55:04,700
the meaning of life and why I needed to tell people about it. I said it doesn't seem crazy to me.

415
00:55:04,700 --> 00:55:10,620
It actually makes a lot of sense that we all have similar basic needs as humans and why can't we

416
00:55:10,620 --> 00:55:17,020
agree to create a world that understands that? We falsely believe that there is scarcity when we

417
00:55:17,020 --> 00:55:23,740
actually know that there is waste and excess. I said I wanted them to remove my diagnoses of

418
00:55:23,740 --> 00:55:31,420
bipolar and psychosis. I felt it harmed my credibility. They decided not to remove my diagnoses.

419
00:55:31,420 --> 00:55:39,580
But one of the graduate students there then raised his hand and asked me if I had ever heard of

420
00:55:39,580 --> 00:55:51,500
Mausole's hierarchy of needs. No, I hadn't. How much of my life would be different? If instead of how

421
00:55:51,500 --> 00:55:59,740
I was treated in the psychiatric hospital, someone had instead shown me this chart and just sat down

422
00:55:59,740 --> 00:56:05,340
and talked to me about one of the most famous theories of psychology and the human potential movement.

423
00:56:06,620 --> 00:56:12,620
Most anyone who has ever taken a psychology 101 course could have had this discussion with me.

424
00:56:12,620 --> 00:56:20,460
Every single person that worked at that hospital absolutely had the background to have this

425
00:56:20,460 --> 00:56:28,380
discussion. But not one of them felt it was important to listen to the content of what I was saying.

426
00:56:28,380 --> 00:56:35,580
They thought they knew what was best for me. They thought they were helping me.

427
00:56:35,740 --> 00:56:38,700
They really had it wrong.

428
00:56:38,700 --> 00:56:46,060
My mom was told that the NAMI family support groups that I simply lacked insight and my only

429
00:56:46,060 --> 00:56:52,540
hope for getting better was through medication. In the handout she was given, there was actually one

430
00:56:52,540 --> 00:57:00,300
for tips for how to bend the truth to providers or police in order to get me hospitalized against my will.

431
00:57:01,820 --> 00:57:08,460
Think goodness my mom never did that. But how she was educated and then what she pushed me to do

432
00:57:08,460 --> 00:57:16,220
deeply impacted our relationship. It's really sad that I felt I had to cut off my relationship with

433
00:57:16,220 --> 00:57:22,620
my family for many years in order to prove to everyone that I could find another way.

434
00:57:22,620 --> 00:57:31,500
They now see what I was trying to say back then and feel deute by all the messages they

435
00:57:31,500 --> 00:57:35,980
were told about what was going on with me and what my life would look like and what I needed to do.

436
00:57:35,980 --> 00:57:45,500
No one person holds the ultimate truth. There is always a bigger picture. There is a purpose

437
00:57:45,500 --> 00:57:50,860
to different perspectives. There is a purpose to those that we think of as fools.

438
00:57:50,860 --> 00:57:59,260
It stretches us to grow to see beyond our own narrative, to learn from our own foolishness.

439
00:58:01,340 --> 00:58:07,500
Those who actually lack insight are those who do not try to see from another's perspective.

440
00:58:07,500 --> 00:58:13,740
Do not try to understand the context or bigger picture of what is going on for a person in their life.

441
00:58:13,740 --> 00:58:20,140
Those who simply reduce everything into these symptoms mean this, that's the person must do this.

442
00:58:20,140 --> 00:58:25,900
Psychosis means that a person must take medications. This is not truth.

443
00:58:26,780 --> 00:58:32,620
I work with people in psychosis all the time who do not take medications and who want to avoid

444
00:58:32,620 --> 00:58:41,020
psychiatric hospitalization. You have to take the time to listen, to truly understand the content

445
00:58:41,020 --> 00:58:47,180
and the context in order to try to understand the meaning of what someone is saying and how it applies

446
00:58:47,180 --> 00:58:54,620
to them, to those around them and to their community. Many clinicians consult me on some of their

447
00:58:54,620 --> 00:59:00,300
most puzzling clients. Individuals and families find their way to me usually when they feel failed by

448
00:59:00,300 --> 00:59:07,820
everything else. One of the things that makes me effective is that I am super empathic. I can feel

449
00:59:07,820 --> 00:59:14,940
into what it is like to be them. And so often what they are saying, what they are going through makes sense

450
00:59:14,940 --> 00:59:22,700
to me. If you put yourself in their shoes, you can see how anger might really be frustration

451
00:59:22,700 --> 00:59:33,900
over some unmet need in their life. So is it mind, is it the body, or is it spirit? I believe it is

452
00:59:33,900 --> 00:59:41,980
important to work with all three. You see that spark of resistance in me was my soul.

453
00:59:41,980 --> 00:59:51,020
My spirit knew that I had a different destiny than the one the mental health system had laid out

454
00:59:51,020 --> 00:59:59,180
for me. To live at home with my mom over-medicated and on the pathway to drooling and obesity? No.

455
00:59:59,180 --> 01:00:07,020
And maybe I don't want to be president anymore, but I still do want to live in a more caring

456
01:00:07,020 --> 01:00:15,340
and compassionate world. One where we see and embrace each other's humanity. Thank you.

457
01:00:15,340 --> 01:00:25,340
[Applause]

458
01:00:25,340 --> 01:00:27,340
Yeah.

459
01:00:27,340 --> 01:00:35,340
[Applause]

460
01:00:35,340 --> 01:00:37,340
What happens to grab a little bit more?

461
01:00:37,340 --> 01:00:41,340
[Applause]

462
01:00:41,340 --> 01:00:43,340
Okay.

463
01:00:43,340 --> 01:00:47,340
[Applause]

464
01:00:47,340 --> 01:00:53,340
Thank you so much for such a comprehensive, rich,

465
01:00:53,340 --> 01:01:03,340
expert talk. Thank you. My question to you is about how to help families, right?

466
01:01:03,340 --> 01:01:12,140
So you talked about your experience at home, and I wonder about, you know, your family being given

467
01:01:12,140 --> 01:01:19,340
messages that you need to be hospitalized, and then finding you not bathing or not eating or not sleeping.

468
01:01:19,340 --> 01:01:30,540
What can we tell families around how to be effective during that time of crisis without telling them to send their

469
01:01:30,540 --> 01:01:32,540
kid to the ER?

470
01:01:32,540 --> 01:01:38,540
Yeah. I think that's a great question. You know, a lot of my work is with families, you know,

471
01:01:38,540 --> 01:01:43,660
in helping them because in order to avoid psychiatric hospitalization, you really do need to work with

472
01:01:43,660 --> 01:01:50,620
the support network. And most of the people I see that get hospitalized is because the people around them

473
01:01:50,620 --> 01:01:57,820
are tired, they're exhausted. They need to go to work, you know, they can't deal with this

474
01:01:57,820 --> 01:02:03,500
person being up 24 hours a day, you know, where they feel that they have to, you know, watch them.

475
01:02:03,500 --> 01:02:08,620
And so it's really exhausting. And families, you know, even from the time of the

476
01:02:08,620 --> 01:02:15,820
institutionalization, it really put a lot of expectation on the families, you know, we didn't create the

477
01:02:15,820 --> 01:02:23,020
community support, and it puts this expectation that families need to not only feel like they have

478
01:02:23,020 --> 01:02:29,180
to financially support their loved one, but then also take time off of work to be the ones,

479
01:02:29,180 --> 01:02:34,380
be the primary caretakers. How do you balance that? You know, and so families are exhausted,

480
01:02:34,380 --> 01:02:39,980
and they're looking at the professionals like, you guys are paid to help people like this. I'm not

481
01:02:39,980 --> 01:02:44,620
an expert. You guys are the expert. Why don't you help? And so they're trying to push their loved one

482
01:02:44,620 --> 01:02:52,380
onto the the the mental field understandably, you know, and so a lot of it is I work with families

483
01:02:52,380 --> 01:02:59,820
on how to prioritize their own boundaries, you know, their own sense of, you know, taking care of

484
01:02:59,820 --> 01:03:06,620
themselves, the, you know, the oxygen mask that, you know, the parents, they do need to be able to

485
01:03:06,620 --> 01:03:13,180
go to work so that they're not all, we don't want everybody to start grounding basically and being

486
01:03:13,180 --> 01:03:20,620
struggling, you know. So one of the things is, is there a bigger view of how they could support

487
01:03:20,620 --> 01:03:26,940
the individual and shifts, you know, finding other people that can come in so that mom and dad can

488
01:03:26,940 --> 01:03:35,660
get a break. You know, is there even working with mom and dad on some of the the need to always be

489
01:03:35,660 --> 01:03:40,620
there? Like so, you know, there's sometimes this expectation, well, I've got to prevent them from,

490
01:03:40,620 --> 01:03:47,340
you know, doing xyz, you know, and so then maybe there's not always that expectation that is

491
01:03:47,340 --> 01:03:52,780
actually needed. So I really work with the families on what to increase their bandwidth for

492
01:03:52,780 --> 01:04:00,220
supporting what is going on because it is an intensity level that, you know, is alarming. So I work with

493
01:04:00,220 --> 01:04:07,980
a lot of people in their fear, you know, the fear of the worst that could happen, you know, and it is

494
01:04:07,980 --> 01:04:15,020
a fear. And so we look at, well, you know, just because xyz has happened in the past doesn't mean that

495
01:04:15,020 --> 01:04:21,740
that's going to happen this time. We're doing things differently this time. We have different avenues.

496
01:04:21,740 --> 01:04:27,660
We have here's, you know, the resource of the peer respite that they could go to instead of a

497
01:04:27,660 --> 01:04:32,460
psychiatric hospital. Here's, you know, other things that they could do. Now they know that they need

498
01:04:32,460 --> 01:04:38,300
to get sleep. Here's some other ways that they can learn how to prioritize getting sleep. I tend to

499
01:04:38,300 --> 01:04:46,380
find if you calm down the whole crisis energy that everybody's, you know, just like this, if you start

500
01:04:46,380 --> 01:04:53,500
to calm it all down, the situation just starts to naturally get a little bit better. The person starts

501
01:04:53,500 --> 01:05:00,540
to be able to potentially go to sleep, you know, so really I work with like create your home environment

502
01:05:00,540 --> 01:05:07,020
that you're all understanding this person needs to sleep. So mom, don't be standing right in their room,

503
01:05:07,020 --> 01:05:13,980
you know, asking them questions all the time. Just let them, you make your own dinner and relax and

504
01:05:13,980 --> 01:05:17,980
just let them, you know, relax over there. So

505
01:05:17,980 --> 01:05:35,020
I want one quick comment and one question. The comment is that I think, you know, you brought up,

506
01:05:35,020 --> 01:05:40,460
for example, open dialogue, which comes out of Finland and one of the things I often think about

507
01:05:40,460 --> 01:05:45,900
in these conversations is that, you know, there's a lot of emphasis place on the role of psychiatry as

508
01:05:45,900 --> 01:05:51,660
a profession has played in this dynamic, but which I don't, I don't think is unfair, but I just

509
01:05:51,660 --> 01:05:55,740
think it's important to point out too that there's a lot of structural issues in our society that

510
01:05:55,740 --> 01:06:02,540
play into this. The lack of a social safety net that catches people, the healthcare system that

511
01:06:02,540 --> 01:06:08,620
incentivizes care in certain ways and doesn't pay for certain things. So you kind of touched on

512
01:06:08,620 --> 01:06:13,420
those by distance. To me, it's very important and it's not to like deflect blame from the field of

513
01:06:13,420 --> 01:06:18,860
psychiatry for where we failed, but to also point out that we live in a society that is deeply

514
01:06:18,860 --> 01:06:26,780
dysfunctional on a structural level and doesn't create the space for the kinds of systems that I

515
01:06:26,780 --> 01:06:34,700
think we need to imagine. And so that's my comment. My question, one of the places I always struggle with

516
01:06:34,700 --> 01:06:40,860
in these conversations, I really liked your point about the, I forget the term you used, but the

517
01:06:40,860 --> 01:06:47,100
sort of bias that arises when you work with only the most severe cases. I happen to work in a jail,

518
01:06:47,100 --> 01:06:53,580
which is a very challenging place for around many of these issues because I do work with people who

519
01:06:53,580 --> 01:07:00,620
sometimes it was because of their symptoms. Sometimes it was incidental, but you know, have wound up

520
01:07:00,620 --> 01:07:07,820
in situations that are very, very serious, including on occasion violence and so forth. So my question to

521
01:07:07,820 --> 01:07:14,780
you is, and me, I don't want, at the risk of overemphasizing our small minority, I do wonder what

522
01:07:14,780 --> 01:07:19,500
your thoughts are on how to handle these cases where there really truly are safety concerns,

523
01:07:19,500 --> 01:07:29,420
violence or self-injury. What do we do if not apply? Because my fear is that there ultimately will

524
01:07:29,420 --> 01:07:34,460
be coercion. If it's not coming from the mental health field, it'll come from the legal system

525
01:07:34,460 --> 01:07:41,500
and the carceral system. So I'm just curious what your thoughts are on that. Yeah, and yeah, that's a

526
01:07:41,500 --> 01:07:49,500
great question. That's why I bring up the examism. Of course, I 100% agree with you. I did not have

527
01:07:49,500 --> 01:07:56,620
enough time to really, you know, lay out what are our actual issues, which I do see as our society

528
01:07:56,620 --> 01:08:02,620
and how it's designed, you know, and that a lot of what we're dealing with is poverty, you know,

529
01:08:02,620 --> 01:08:07,980
and we are not addressing that. We are not addressing that the income is way at, you know, the few

530
01:08:07,980 --> 01:08:14,380
at the top, and that this is the result of, you know, a huge amount of inequality and people not

531
01:08:14,380 --> 01:08:22,940
having access to meet their basic human needs. And a lot of the, you know, anger is around

532
01:08:22,940 --> 01:08:28,300
frustration around this. You know, there's it's powerlessness to change anything and to get your

533
01:08:28,300 --> 01:08:36,060
needs met. So, you know, yes, in, you know, my dream is that we could change how we, you know, are

534
01:08:36,060 --> 01:08:44,060
structuring our society to really understand this. And then the psychosis sanctuary that I pointed out,

535
01:08:44,060 --> 01:08:52,860
like, Sotaria Diabesis, I Ward, the Arty Langh houses, this was another kind of approach for instead

536
01:08:52,860 --> 01:08:58,940
of psych hospitals, instead of early psychosis problems, this was the approach that we had, you

537
01:08:58,940 --> 01:09:06,220
know, three of these houses right here in the Bay Area, actually four, but they got systematically

538
01:09:06,220 --> 01:09:15,340
shut down because of the rise of the pharmaceutical industry. And, but the way that they worked with violence,

539
01:09:15,340 --> 01:09:21,420
basically. So, it's not to say that people won't get violent, you know, ever, but it's how do you

540
01:09:21,420 --> 01:09:29,580
escalate these situations in a way that you don't use, you know, just rely on force and medication

541
01:09:29,580 --> 01:09:38,860
to, um, to deescalate. And so, there are ways, you know, with if you really start to listen to the person,

542
01:09:38,860 --> 01:09:44,140
if you really start to provide an avenue where I said the freak out rooms because to understand that

543
01:09:44,140 --> 01:09:50,140
if you allow somebody to scream and yell, most of our environments, we don't allow that because we

544
01:09:50,140 --> 01:09:55,980
will have to keep the peace for everyone else. And it makes everybody very uncomfortable to be around

545
01:09:55,980 --> 01:10:02,700
pure anger, you know, everybody gets very afraid naturally. But if we can allow somebody, we can

546
01:10:02,700 --> 01:10:10,300
create the space, you know, that they can be able to express anger, we have these things that,

547
01:10:10,300 --> 01:10:16,940
you know, people pay to go to like destruction rooms, you know, and we understand that people have,

548
01:10:16,940 --> 01:10:24,140
you know, pants up anger that they want to express. And when you move through it, often what's behind

549
01:10:24,140 --> 01:10:32,620
the anger is a lot of sadness. And so, if you can support the person to move the emotion of anger,

550
01:10:32,620 --> 01:10:37,980
move it out and move it through, you can go to the next level, which is then working with them

551
01:10:37,980 --> 01:10:47,260
through the sadness. And often that's a way to hold space. Of course, you know, in an I award,

552
01:10:47,260 --> 01:10:53,260
there's still a few people alive that worked. So Michael Hornwall and Meg Whittaker Green,

553
01:10:53,260 --> 01:10:59,260
they've been, you know, working mental health for many, many years, but they both worked at I award.

554
01:10:59,260 --> 01:11:05,180
And so, you know, they're very much available to talk about how they worked with people because

555
01:11:05,180 --> 01:11:12,940
it was full-blown psychosis, zero medications at all. And so people would go into J-Word,

556
01:11:12,940 --> 01:11:17,340
this is in Concha Costa County, the psych hospital is called J-Word. They were going to J-Word

557
01:11:17,340 --> 01:11:22,460
and full-blown crisis, they were given a choice. Do you want to remain in J-Word and, you know,

558
01:11:22,460 --> 01:11:29,100
be on the psych unit? Or here's an option of I-Word that you could go to. It's an unlocked facility,

559
01:11:29,100 --> 01:11:35,260
for many years it was unlocked. And they had that choice, you know. And so people would go directly,

560
01:11:35,260 --> 01:11:42,380
they walked over there that day in full-blown crisis. And the way it was is like this meal you therapy

561
01:11:42,380 --> 01:11:48,700
person gravitates to whoever they feel that they want to talk to. Everyone's just kind of available

562
01:11:48,700 --> 01:11:54,380
holding space. And then that's who you kind of work with, you know. And it's just a different way

563
01:11:54,380 --> 01:12:00,380
of designing, you know, treatment and care. It's just the openness, the availability to have conversations,

564
01:12:00,380 --> 01:12:06,620
go with things where you're not responding with a lot of fear or we got to control this situation.

565
01:12:06,620 --> 01:12:14,220
Instead you're open to what is happening and that helps the person to feel seen and heard so much

566
01:12:14,220 --> 01:12:27,420
that they actually don't have to yell at you to try to get you to hear them.

567
01:12:27,420 --> 01:12:30,620
Okay.

568
01:12:30,620 --> 01:12:48,460
[Music]