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WISE Basics Beating the Stigma of Mental Illness

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1 WISE Basics Beating the Stigma of Mental Illness
Increasing Inclusion, Hope and Support Beating the Stigma of Mental Illness Have you looked at the presentation checklist? Please prepare ahead of time and ask your co-presenter to listen to any examples you plan to use beyond what are given in the script to help assess the effectiveness of them in clarifying the key points of the program. The whole time with your group should be a 50/50 balance of you talking and the group discussing the information. ENJOY! Welcome audience and thank them for inviting you to share the information that has motivated people from across the state to work together to increase inclusion, hope and support for those facing mental health and substance abuse challenges. Invite participants to consider what their experience has taught them about stigma and what the research presented might mean for their own work to reduce stigma. Some slides from Patrick Corrigan PhD, IL Institute of Technology, international stigma researcher

2 Statewide collaboration of organizations and individuals
Statewide collaboration of organizations and individuals. Promote evidence based practices, current research and outcomes evaluation. Majority speak from experience of stigma and recovery. Offer insights, resources, and support for stigma reduction WISE offers insights, resources and support for stigma reduction by organizations and individuals in WI. (more later)

3 WISE Active Partners: Care Connections (Waukesha County NAMI Support Group) Center for Suicide Awareness COPE Services Dry Hootch Grassroots Empowerment Project Illinois Institute of Technology LaCrosse Mental Health Coalition Latino Health Coalition – Mental Health Action Team MHA Wisconsin Milwaukee Center for Independence Marian University NAMI WI, Greater Milwaukee & Racine Prevent Suicide WI Rogers InHealth University of WI Milwaukee and Madison WI Department of Health Services WI Family Ties WI United for Mental Health ETC. This list represents those organizations who are active in the work of WISE. There are others beyond this list. Keep in mind that most of our participants are individuals with lived experience who also work in the field of mental health and some participate as individuals rather than representing any specific organization.

4 GOALS Explore stigma Internalized shame Frame stigma change
Public stigma Internalized shame Frame stigma change Connect to your work and that of WISE Goals of the time together. We will explore stigma and invite your input from what you might have experienced or observed. 4

5 National Consortium on Stigma and Empowerment
IIT – Patrick Corrigan PhD Yale U Penn Rutgers Temple Dr. Corrigan’s work is done through a consortium of stigma researchers from this list of academic institutions. The core of their work can be found at the website listed on the slide. We will be exploring information gained from their collaborative efforts and that of others in the field.

6 1 in 4 47% in our lifetime EPIDEMIC? anxiety schizophrenia depression
trauma Drug and alcohol abuse eating disorders Just a simple statistical reminder of why we dedicate ourselves to the reduction of stigma related to mental illness. 1 in 4 in any given year will experience mental illness or substance use disorders. The CDC data is that 47% of people will have a diagnosable mental illness in their lifetime. So how does stigma play a role in these numbers? EPIDEMIC?

7 What is stigma? Where does it come from?
Let’s start with two questions.

8 Stigma Stigma Definition and Types Definition Stereotype-ideas
Prejudice-beliefs Discrimination- actions Types Internalized Shame Public Structural Stigma can be described with three words- stereotypes (ideas), that lead to prejudice (beliefs), that leads to discrimination (action). It comes in the form of public, internalized shame for those experiencing mental health challenges, and structural (policies and processes that reinforce discrimination) stigma. We’ll take a practical look at the definition on the next slide. 8

9 Example of Public Stigma
STEREOTYPE People with MI are: weak, dangerous…. PREJUDICE They are bad because: scary, shameful. DISCRIMINATION So, don’t: hire, serve, rent to them Take a moment to reflect on how you have seen stigma play out in public. WISE focuses our efforts on eliminating public stigma. The other focus is… 9 9

10 Internalized Shame Public Stigma  self esteem  sense of efficacy
I am not good I am not able …Internalized shame. Walk through the slide click by click. Last click is just the last arrow showing the cycle feeding upon itself. Once again, when we explore what works to reduce stigma, you will see how reducing discriminatory behaviors and reducing internalized shame rely on the same approach. But first, let’s look a bit deeper at discrimination and begin by connecting to other areas of discrimination that exist today and have been transformed to varying degrees of success throughout human history. So, why try? Avoidance and apathy

11 Racial Discrimination
Racism- fueled by stereotypes that become beliefs which plays out in discrimination. 11 11

12 Religious Discrimination
12 12

13 Gender Discrimination
And, gender discrimination.

14 Co-Occurring Stigma (public and internalized)
Heterosexism Racism Sexism Ableism Etc. 2011 YRBS data showed LGBT youth in WI had: - 5X the rate of suicide attempts - 3X more likely to skip school due to feeling unsafe - 50% felt like they did not belong at school People are multi-dimensional and sometimes face stereotypes, prejudices and discrimination from more than one angle. (YRBS= Youth Risk Behavior Survey, a national survey of youth about various health topics given in high school.) Ask the audience if they have examples of co-ocurring stigma. Rogers InHealth website has a story of a woman, Debbie, who found her mental health recovery once she was able to step proudly into her identity as a person who is deaf.

15 People with mental illness are dangerous
In the movies Discriminatory behaviors towards people with mental illness have their roots in stereotypes that have been amplified in many areas. One such stereotype is that people with mental illness are extremely dangerous. This is amplified in the movies. 15 15

16 People with mental illness are dangerous
In the newspapers 16 16

17 People with mental illness are dangerous
In advertising 17 17

18 Some ask if we aren’t being too critical, after all, (click) what’s the harm? (say this and then go to next slide) What’s the harm?

19 How many of you are comfortable with this notion of the value of a woman, being consistently portrayed for your daughters, sisters, female friends?

20 People with mental illness are lovable and incapable
“Benevolent” Stigma Not all stigma is overtly mean-spirited. Yet the impact of seeing someone as incapable or less-than can lead to the same discriminatory behaviors. 20 20

21 OK, but isn’t it better lately?
Some of these images come from decades ago. Haven’t beliefs and behaviors improved? 21

22 Trenton State Hospital
July 10th, 2002 Trenton State Hospital has fire. In 2002 when a fire broke out in a New Jersey psychiatric hospital, the initial headline read…

23 The copy editor that approved of the headline lost his job over this and the conversation still goes on about it online- even after his death. 23

24 The false idea that people with mental illness are more dangerous has increased
In research that looked at stigma patterns over time, we might expect the results to show that less of us believe that mental illness results in dangerousness. It was actually the opposite. But, hasn’t it improved in the years since 2000 when there were so many campaigns to help people understand that mental illness is an illness of the brain, not the will? Phelan, Link et al 24

25 …and remains high. DANGER Phelan, Link et al 25
No. It has remained high. Phelan, Link et al 25

26 Examples of Discrimination?
Where do we see the impact of discrimination?

27 Public Stigma: It’s Impact on SOCIAL INCLUSION
Lost employment Subpar housing Worse health care Diminished education opportunities Alienated from faith community Here is where we begin to understand why WISE focuses on discrimination of people with mental health and substance abuse challenges. These categories come from research with people who have a lived experience of mental illness. They report discriminatory behaviors by people in these sectors as deterrents to their recovery. What one thinks about a person cannot be known for sure. One’s actions are concrete and observable. Regardless of intention, when the outcome of an action is a deterrent to another’s rights, we have a responsibility to bring that to the light and and work together to create a positive communal response. For example, for employment: Past research has shown that most people with serious mental disorders are willing and able to work. [8,13] Yet, their unemployment rates remain inordinately high. For example, large-scale population surveys have consistently estimated the unemployment rate among people with mental disorders to be three to five times higher than their nondisabled counterparts. Sixty-one percent of working age adults with mental health disabilities are outside of the labor force, compared with only 20% of working-age adults in the general population. [14*] Unemployment rates also vary by diagnostic group from 40 to 60% for people reporting a major depressive disorder to 20-35% for those reporting an anxiety disorder. Unemployment rates for people with serious and persistent psychiatric disabilities (such as schizophrenia) are the highest, typically 80-90%. [15] As a result, people with serious mental disabilities constitute one of the largest groups of social security recipients. [16*,17**] Discrimination of people with mental illness in the work place is a deterrent to an individual’s recovery and to our community having access to valuable human input by those with mental health challenges. WISE works with organizations to implement effective practices to reduce workplace discrimination.

28 Stigma Change Processes
Protest Education Contact These are the three ways people and organizations have attempted to reduce stigma. We will define these and look at what research tells us about the impact on stigma. 28

29 Protest Review stigmatizing images
“Shame on you for thinking that way” 29 29

30 Unintended consequences of well intended actions
“The white bear” Beware of the rebound effect There can be unintended negative consequences of well intended actions. I want you to avoid thinking about the white bear. (click) Do not imagine the white bear, Do not talk with anyone else about a white bear. As a matter of fact, it is pretty shameful the think about white bears. Obviously, many of you are thinking about white bears. This is called (click) The rebound effect. Researchers found such an effect as an unwelcomed outcome of some protests against stigmatizing images, movies, TV shows, etc. Can anyone think of an example of a time when protest was used to reduce stigma? Most recently there was protest about another issue- the rights of all people to choose marriage regardless of sexual orientation. The “patriarch” of the family in Duck Dynasty made stigmatizing comments about people who are gay. The protests were loud and the rebound was dramatic. There was initial talk of cancelling the show and instead, sales of Duck Dynasty items increased and people took very public stances in support of the right to make such comments. There was an unintended negative consequence of the well intended protest against the stigma of being gay. Another example is the Wonderland TV series. Wonderland is a short-lived and controversial 2000 ABC television drama directed by Peter Berg. It depicted daily life in a mental institution, from the perspectives of both the doctors and patients. Only two episodes aired on ABC during its original run in 2000. The show had many controversial positions on the mental health crisis and its treatment.[2] A man who suffers from schizophrenia goes on a shooting spree in Times Square and later stabs a pregnant physician in the stomach in the opening scenes from it’s first episode. The series portrayed a bleak life for people with mental illness and groups like the National Alliance on Mental Illness (NAMI) criticized its theme of hopelessness. Wonderland was promptly cancelled because of heavy criticism from mental health groups though it was brought back in 2009 to air all eight episodes. TV Guide included the series in their 2013 list of 60 shows that were "Cancelled Too Soon".[3] We are not suggesting that protest is never appropriate. We are suggesting that our choices be well thought out and the unintended outcomes be considered in the decision of what approach works best for the specific goals of your actions. 30

31 Education Review key myths and facts that counter these myths
Another approach to reduce stigma has been education. In this approach we often talk about myths that people believe and educate them on the facts to counter these myths. 31 31

32 Myth: People with serious mental illness can not care for themselves; need to be institutionalized.
Fact: Long term follow-up research suggests 2/3rds of people with schizophrenia learn to live with their disabilities. RECOVERY is the rule For example, educators discuss the myth and facts around recovery.

33 Myth: People with serious mental illness are dangerous.
Fact: People with untreated mental illness are slightly more dangerous especially when using drugs or alcohol BUT… They are more likely to be victims of violence Or the concept of dangerousness.

34 Meta-Analysis: Knowledge and Stigma
DOES STIGMA DECREASE AS KNOWLEDGE INCREASES? Knowledge: Causes of Mental Illness Stigma: Acceptance A meta-analysis is when a research team looks at many recent research outcomes from research about a common theme to discover patterns in the outcomes. In this case, they looked for research on how knowing more about mental illness would impact the stigma of mental illness. The thought was that if someone knows more about mental illness and the causes (biologic and genetic), they will be more to accept a person with a mental illness in their home, community and workplace. Schomerus, Schwann, Holzinger, Corrigan, Grabe, Carta, & Angermeyer, 2011

In the time period from 1990 to 2006, the general population improved their knowledge that mental illness is a brain disease. Same is true for the fact that it can be genetic. (the researchers looked at research related to depression and schizophrenia) So, how did this impact stigma? Schomerus, Schwann, Holzinger, Corrigan, Grabe, Carta, & Angermeyer, 2011

Yet, in that same time acceptance of someone with schizophrenia got worse and depression did not improve. The same holds true for co-worker acceptance. Schomerus, Schwann, Holzinger, Corrigan, Grabe, Carta, & Angermeyer, 2011

37 1990-2000 Decade of the Brain Impact? Blame went down
Belief in recovery also went down This was very surprising and disheartening since many resources had been put into educating people about mental illness and the brain (chemistry, genetics) in the 90s and 2000s. Some researchers have said that one explanation might be that people in our culture seem to think that humans are changeable from the neck down but pretty fixed from the neck up. In other words, we do not see our mental status as flexible and resilient. If education did not bring us the outcomes we want, what does?

38 Contact “Meet Bob Lundin”
This is the third option organizations have tried to reduce the stigma of mental illness- CONTACT. Bob Lundin has co-authored a few books with Dr. Corrigan. Bob demonstrates contact using his own story. 38 38

39 Bob’s story My name is ______ and I have a severe mental illness called schizo-affective disorder My childhood was not unusual… Unfortunately, my mental illness was traumatic. It did not go away quickly… Despite these problems, I have achieved several accomplishments. Go through the brief outline of Bob’s story and connect with the fact that they will be hearing a story of recovery when your partner speaks later. Let’s look at the impact of meeting someone with a mental illness and learning their recovery story… 39 39

40 This graph compares the impact of education with the impact of contact (meeting a person living in recovery with mental illness) on people's perceptions of the dangerousness of persons living with mental illness. From pre to post you can see that contact had the greatest impact although education did have some positive impact. (The control group’s slight improvement is a usual phenomenon that can be explained by the same interferences that must be accounted for in any study such a what is in the media at the time.)

41 The same pattern is seen for acceptance
The same pattern is seen for acceptance. People are less avoidant of others with mental illness after education and even less avoidant after contact. But it is when we look a month or two out that we find even more startling differences between education and contact.

42 Avoidance: from pre to 1-month follow-up
The positive outcomes are lost and even may worsen as you survey the participants a month after the education, while they get even better over time from the experience of meeting someone and learning the realities of their life. Why do you think this might be? Wait to hear ideas and if this is not mentioned, add: If I am told my original ideas are wrong (myth busting) and there is no positive emotional attachment to this new information (finding the person who has told their story to be likeable, funny, sincere, etc.), when I encounter a stigmatized view of mental illness in the future, I may feel angry that I was “tricked” into thinking something else and I return to my previous thought and behavior patterns- perhaps with even more vigor.

43 What a DIFFERENCE a friend makes!
Social media campaigns have been used for decades to try to lessen stigma. The federal Substance Abuse and Mental Health Services Administration put a lot of money and other resources into this campaign. How did it do?...

44 One way to judge campaigns is the market penetration- who saw the add
One way to judge campaigns is the market penetration- who saw the add? This is a high level of penetration. 1/3 of the country- about 100 million people! 44

45 Website visits Such campaign have an “ask” of the viewer. In this case, they were asked to go to a website. 45

46 100 MILLION Effect Size thousands
Thousands did. You can see that the depth of impact is lessening thousands 46

47 Just going to the site is not enough
100 MILLION Effect Size Just going to the site is not enough 88% left after one minute! And continues to look pretty slim! The answer to reducing stigma is found in a much less glamorous plan. thousands 47

48 Framing Stigma Change Protest Contact Media-based X XX XXXX Live
processes Protest Education Contact Media-based X XX XXXX Live XXXXXX vehicle Remember what we looked at so far? While education and protest may have some positive gains with some, the question of longer term impact and unintended negative consequences, leaves contact as the approach most supported by research. The approaches are divided into live and media-based because researchers have and continue to ask which works best within each approach. 48

49 Many education efforts have helped us to understand the pain of mental health crises.

50 Yet, there exists a curtain of ignorance about recovery.

51 Recovery: Mental Illness and Addiction
A process of change through which people work to improve their own health and wellbeing, live a self- directed life, and strive to achieve their full potential. SAMHSA’s four essential dimensions of recovery: Health Home Purpose Community When we use the term recovery, we are talking about it from the definition that the federal Substance Abuse and Mental Health Services Association has promoted. We are talking about full inclusion! So let’s look deeper at what research says about how to increase contact with people living in recovery with a mental illness or addiction in order to reduce stigma and more specifically, discrimination.

52 TLC4 Targeted Local Credible Continuous Change-focused Contact
The model is known as the TLC4 model. Let’s look at each. 52

53 Who Should the TARGETS Be?
Health care professionals Employers Landlords Teachers Legislators Faith communities When you ask people who experience the stigma, they point to these sectors of our communities as where they have encountered stigma. While this list represents the priority sectors to focus stigma reduction efforts, your organization may have information about the experience of stigma in your community that points to a different target group.

54 What is LOCAL Contact? Does it play in Wausau? x MILWAUKEE
Stigma reduction works best if it is designed locally to meet the characteristics of the local community. MILWAUKEE

55 Local City Office Church, synagogue, mosque Workplace School
In each community the programs are further designed to meet the characteristics of the sub-populations of that community. 55 55

56 What is CREDIBLE Contact?
Contact with peer Example- Nurse to nurse Pastor to pastor Football player to football player We take in information and integrate it into our thinking, beliefs and behaviors most readily when it comes from someone we consider a peer- someone like us- who understands us and our lives. Credible does NOT mean famous. Brandon Marshall’s greatest impact is on other football players- his peers. 56

57 CONTINUOUS Contact Once is not enough And variety is needed
WISE can help with examples from around the state of diverse and multiple activities organizations include in their stigma reduction efforts over longer terms than the one-time event. This is about a culture shift and that takes dedication over a longer period of time. The plan can become a part of the overall organizational strategic plan. 57

What do you want the target group to do differently as a result of the contact? For example, you may want faith groups to consider hosting support groups as a sign that they do not discriminate against people with mental health or substance abuse challenges. In that case, you would want story tellers who can talk about the role of support groups in their recovery. For one community that targeted civic organizations and know that they had very little time with them, their goal was to have members of those civic groups invite them to their places of work and worship to share more stories and engage people at a deeper level. The story tellers told about the role that their congregation or work place played in their illness and recovery. Question: Can you think of a change you would like to see in a particular group and a story that might engage that conversation?

59 TLC4 Targeted Local Credible Continuous Change-focused Contact
To review… 59

60 the Grand Plan Speak up everyone Speak up everywhere
Honest, Open & Proud “strategic disclosure” So the grand plan to eliminate stigma is … (read slide)

61 Levels of Disclosure Social Avoidance – avoid situations
Secrecy – work to keep it a secret Selective Disclosure – share it with select people Open Disclosure – no longer hide it Broadcast Your Experience – actively share it If getting to know someone living in recovery with a mental health challenge is the key to eliminating stigma then we must first and foremost consider how to support those with a story to share. Honest, Open and Proud is a workbook and discussion tool to help people think strategically about their own story. They think about what they want to say and to whom. They look at the pros and cons of disclosure. As someone is able to stand authentically and own their full identity, internalized shame goes down and they have a strong impact on the people around them. WISE believes that the most ethical approach to increasing story telling is, first and foremost, to provide support for the story teller- WISE works to train and support people as they consider the very personal decision to talk about their journey. The goal is for any revealing of one’s story to be a safe and healing experience for that person and only secondarily, a way to eliminate public stigma. In the HOP program you learn about how to navigate levels of disclosure. (briefly go through slide) If someone is considering the use of their story to impact groups of people through public presentations, NAMI’s In Our Own Voice is an excellent program.

62 One of our state organizations- a chapter of the national organization- National Alliance on Mental Illness- has a program that supports the TLC4 plan by training people to tell their story in public groups. The NAMI IOOV program has specific defined parameters for their story tellers. HOP offers a more flexible approach for those who do not participate in IOOV. Both offer great resources to our communities. 62 62

63 Your Recovery Story By now, hopefully you have clearly heard that your story of recovery is the best currency to increase inclusive and supportive behaviors by all of us who live and work together in our communities.

64 General Public Programs/Contact
Train/Support Storytellers Engage Organizations Seeking to Reduce Discrimination Components: WiSE Basics Discussion Support for Strategic Disclosure HOP Consultation as Organizations Apply TLC4 WiSE Guide to Design, Implement and Evaluate Plans Statewide Evaluation The model for WISE is to work with organizations to assist them in developing stigma reduction plans that are based on recent research, to assist them to train and support local story tellers, and to gather evaluation outcomes to continue the learning in our state about what works to reduce stigma in all the diverse sectors of our state. The components we offer are listed here.

Seek out people with lived experience - listen to their story. Reinforce & support their resilience & recovery. Wear lime green to create curiosity - be prepared to speak up. Consider the story you can tell about recovery Share other’s stories – for short video stories go to Bring the conversation to your community – work, civic, faith, schools Go through slide regarding what individuals can do and then handout the WISE One Page Description on how and why organizations would want to work with WISE.

66 Story and Discussion My co-presenter today is _________ he/she has come here today to share his/her story of recovery with you. After you listen to the story, we will have time to talk about your thoughts on what you have heard today and what all this might mean for your organization.

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