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SHARING EXPERIENCE LEARNED FIRSTHAND (SELF) PROJECT

Authors:
SHARING EXPERIENCE
LEARNED FIRSTHAND
(SELF) PROJECT
Acknowledgments
We would like to thank the past and present members of the Lived Experience Research
Network (LERN) Board of Directors:
Mark Salzer Priscilla Ridgway
Ron Manderscheid Jonathan Delman
Elaine Carroll David Hughes
Oryx Cohen (former board member)
Past key personnel of LERN:
Nev Jones (former board member)
Laysha Ostrow (former board member)
Stephania Hayes
Timothy Kelly
Susan Stefan for reviewing the ADA section
We would like to thank Dora Raymaker for transcribing the focus groups & interviews, and
Donetta Hayes for her assistance in designing the layout of the report.
And participants from:
Portland, OR
Ontario, OR
Grants Pass, OR
Tacoma, WA
Rupert, ID
Minot, ND
Fargo, ND
Rapid City, SD
Great Falls, MT
Casper, WY
Framingham, MA
Boston, MA
Hempstead, NY
Washington, DC
Suggested Citation
Marino, C., Child, B. & Krasinski, V. (2014). Sharing Experiences Learned Self-Hand (SELF). Lived
Experience Research Network (LERN).
Table of Contents
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
Purpose . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
Stigma and Self Disclosure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2
What Research Tells Us . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Peer Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Veterans . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Policy and Procedures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
Employment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
Providers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16
Higher Education . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18
Responses from Interviews and Focus Groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20
Sharing Lived Experience with Colleagues and Consumers . . . . . . . . . . . . . . . . . . . . . 22
Factors Related to Particular Experiences and Social and Cultural Issues . . . . . . . . . 27
Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30
Findings from the Anonymous Online Survey . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32
Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34
Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36
DISCLOSURE IN THE WORKPLACE . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38
Appendix A - (SELF) Focus Group/Interview Guide . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52
Appendix B - Anonymous SELF Survey. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 54
Appendix C References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62
Appendix D Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 69
“My biggest strength in working with people is my recovery story and
what I’ve gone through and the empathy that I have for people, how I
can try to give them hope, tell them what worked for me. My recovery
story is extremely powerful, and disclosing it is also extremely powerful
because it breaks through the barrier and they realize that I’m not a
clinician, I’m not supervising them, I’m only there to serve them and I’ve
been in their shoes. That’s much more powerful that saying I have this
degree or that degree.”
“Sharing something that gives someone hope is never a bad idea. I will
never forget the moment that someone who did not look like their lived
experience shared, it changed my life because it gave me hope. I won’t
ever not take that opportunity if I believe it would give someone hope. I
want colleagues to have hope for the people they serve, the hope of
recovery.”
“The policy needs to apply to everyone, psychiatrists, social workers,
case managers and therapists and the administrators. It’s not just a peer
thing. Sometimes disclosing is the one thing that connects you with
someone else that shatters the power imbalance that is always present
in the mental health system.”
QUOTES
1
Introduction to the Sharing Experience Learned Firsthand (SELF) Project
Purpose
The purpose of the Sharing Experience Learned Firsthand (SELF) project was to gain an
appreciation from recovering individuals of the role of lived experience of mental health
challenges in professional training and work experience. SELF was conducted under the Lived
Experience Research Network (LERN), an organization developed to promote service user
leadership and inclusion in the behavioral health and disabilities fields. The project was led by
three individuals with lived experience engaged in consumer advocacy and graduate training.
We were interested in the risks and benefits of self-disclosure of lived experience, the effects
on collegial relationships, and the impact on service delivery. Increased understanding of such
experiences could be used in the development of best practices in the use of self-disclosure and
to promote the integration of peers in the behavioral health workforce. Accordingly, we
conducted interviews and focus groups with individuals with lived experience who had worked
in mental health, medical, and academic settings. They spoke to their experiences sharing lived
experience and offered guidance to individuals and organizations regarding disclosure. Social
and work context, discrimination, and the recovery process featured in their responses.
Illustrative quotations will be shared in this guidebook. Based largely on their reports, we
created an online survey to be completed anonymously. It was distributed across the US in
order to gain further understanding of perspectives and recommendations. The findings of the
project will be presented and explored after a selective review of available research.
2
Stigma and Self-Disclosure
Stigma is defined as severe social disapproval due to an individual attribute and is
characterized by lack of knowledge and fear. It is associated with a mark of shame (1). Stigma has
been characterized as a form of social death given the pain of experiences with exclusion and
rejection (2,3). Public stigma represents prejudice and discrimination towards a group by the
larger population. Self-stigma results from internalized negative public attitudes and
stereotypes. It acts to damage self-perception and can lead to demoralization, helplessness,
and hopelessness. Self-stigma has been conceptualized as the opposite of empowerment (4).
Self-disclosure is a key method for challenging stigma and promoting empowerment. The
experiential knowledge derived from interpersonal contact can result in improvement in
attitudes towards mental health issues (5). The interaction of a person with a disclosed mental
health condition and a member of the general public is known formally as Contact. Contact
appears to be the most promising strategy for reducing stigma when compared to educational
efforts and protest strategies (2). Research has demonstrated that members of the general
public who are more familiar with individuals with lived experience of mental health challenges
have less prejudicial attitudes. Attitude change resulting from contact appears to maintain over
time and lead to changes in behavior (6). Engaging in the contact strategy requires that
individuals risk personal disclosure despite the potential of discrimination and harm that may
result.
“My biggest strength in working with people is my
recovery story and what I’ve gone through…”
3
Public and self-stigma can also be
addressed through group
identification or actively associating
with peers who share a sense of
community. Group identification
involves embracing experiences that
have been devalued by society and
welcoming the individuals who have
had such experiences. Acceptance of difference within a social group has been found to be an
important means of overcoming stigma (7). Peer delivered service is one approach that has been
increasing at a significant rate (8). The active ingredients of the programs include sharing lived
experience of mental distress, role modeling recovery, and providing social support.
Relationships that peers have with one another are valued for their reciprocity and mutuality as
individuals have common experiences and both give and receive support. Randomized
controlled studies and a large multisite study have found that participation in peer delivered
services result in either similar or improved clinical outcomes compared to treatment as usual
and demonstrate increased empowerment. One of the essential benefits of peer support is a
sense of hope developed by being in relationship with individuals who have journeyed through
difficulties and overcome challenges (9,10). Despite the serious nature of living with a mental
health challenge in the midst of great societal stigma, limited attention has been given to the
topic of disclosure of lived experience. Individuals are encouraged to share their stories, yet
little is known about how to do so effectively (5,11).
86%
3%
2%
3%
2%
5%
2%
Caucasian
African American
Asian/Pacific Islander
American…
Latino
2 or more races
Declined to say
0% 20% 40% 60% 80%100%
Race/Ethnicity
Anonymous Survey Respondent Demographics
Anonymous Survey Respondent Demographics I
4
What Research Tells Us
Both the experience and fear of stigma have been found to lead to isolation, avoidance of
physical and mental health care, and missed social opportunities. Internalized negative
stereotypes of mental illness appear to lead to self-blame
and the inhibition of pursuing life goals (12). Those with
higher levels of internalized stigma have been found to
report having less meaningful lives. This is especially
troubling given the importance to the recovery process of
recapturing a sense that one’s life has purpose. Exploring
experiences with mental distress and associated losses and
discrimination can assist an individual with making sense of
traumatizing and disorganizing experiences and placing them in life context. Telling one’s story
can help with processing experiences and differentiating the self from what one has
experienced. Individuals need to have selves and lives that include experiences with mental
distress without being equated with such experiences. A clear implication of such findings is
that reduction of self-stigma can support recovery (13,14,15).
Individuals with hidden or concealable stigmas such as mental illness are faced with a
dilemma in terms of disclosure. On the one hand, disclosure may lead to stigmatization and
thereby negatively impact well-being. On the other hand, concealing stigmatized experiences
can limit supports and negatively impact quality of life due to the psychological stress related to
secret keeping. The dynamics of disclosure are complex. Disclosure can support relationship
building and the healing process, but in less positive circumstances it can also result in others
70%
27%
2% Gender
Female
Male
Transgendered
Anonymous Survey Respondent
Demographics II
5
never again viewing you as a valued member of society (3). In one study, the majority of
participants engaged in selective disclosure in which they were open about their experiences
with partners and close family and friends but limited disclosure with acquaintances and
colleagues. Such a disclosure pattern can act to optimize social support and limit stigmatizing
responses for individuals. However, the pattern can have a broader negative impact as
concealment limits contact and familiarity with individuals with lived experience of mental
health challenges. Limited opportunities for engagement can present a barrier to changing
societal attitudes (11).
The literature on self-disclosure appears to indicate that the process is a difficult yet potentially
highly positive experience. While living with mental health issues can be difficult in and of itself,
trying to hide such experiences can make matters even more difficult. Hiding significant aspects
of one’s experience and identity can be inherently shaming. Openness has been found to
promote a sense of power and control over one’s life. Individuals have reported that self-
disclosure has been liberating and an important
part of recovery. Some view disclosure as leading
to emotional wellness and as therefore
inherently therapeutic (3). Self-disclosure can be a
means of addressing internalized stigma as a
necessary step in addressing the larger issue of
discrimination against those diagnosed with
mental health challenges (16,17).
Disclosure is fundamentally a social process that
47%
19%
24%
1% 11%
Living Situation
Urban Small town
Suburban Rural
Frontier
Anonymous Survey Respondent Demographics III
6
involves decision making. Individuals should give careful consideration to the social dimensions
of sharing information (18). Disclosure decisions are tied to individual context and require
thorough consideration of potential benefits and consequences. No one discloses in a vacuum
and it is highly important that one consider the array of factors surrounding disclosure (2,16,3).
Korsbek (19) noted that there is no simple way to assess the personal benefits and costs of
different levels of disclosure. Disclosure is very much a personal choice for which there can be
mixed consequences. Before disclosing, the timing should be right, strategies for coping with
the inevitable challenges should be in place, and individuals should be connected to others who
have taken on the disclosure process themselves.
Disclosure appears to be a process that unfolds over time. How far one goes with disclosure
may be determined by the reactions of others as disclosure becomes problematic to the extent
that an individual encounters discrimination and social barriers (3). As might be anticipated,
receiving support and positive feedback the first time one engages in self-disclosure appears to
lead to a greater sense of trust and a comfort with disclosure (20). Anticipating discrimination
and perceiving that one’s internal coping resources are insufficient appears to lead to reduced
comfort with disclosing to even one’s friends and family (21). Cultural factors should be
considered as well given that groups differ in terms of perceptions of effective communication
strategies. While individualistic cultures such as the majority culture of the US favor direct
communication styles, collectivist cultures may favor indirect strategies especially in
consideration of stigmatized experiences such as mental health challenges. A favorable
outcome of disclosing stigmatized material may be supported by choosing a style congruent
with the individual’s cultural orientation (5).
7
Ken Braiterman (22) is a consumer who provides guidance on how to tell one’s recovery story
and how to decide whether to do so in public. He offers a framework of summarizing the dark
days, reviewing the process of acceptance, discussing treatment and wellness tools, and
exploring one’s successes, hopes, and dreams. He advises that going public with one’s story is a
completely personal decision that should be done with the intention of giving suffering and
recovery meaning by using them to help others and to fight stigma and stereotypes. Many of
those who write on this subject emphasize the importance of distinguishing between disclosure
on a personal level from disclosure on a political level with the intent to address public
attitudes (19). No algorithms exist for determining the costs and benefits of disclosure for an
individual. While the impact of disclosure on an individual can be difficult to determine, the
benefit to the stigmatized community seems more clear (6).
Coming Out Proud (COP) is a three-session manualized peer-led group intervention
developed to support individuals in making decisions regarding disclosure and secrecy in
different settings. The two developers self-identify as individuals with lived experience of
mental illness. The intervention is designed not to lead someone to disclose, but to assist the
individual in finding the response that is right for him or her. Self-determination is valued and
caution and reflection are urged. Sessions explore the impact of illness and recovery on
identity, weigh the costs and benefits of disclosure in different settings, review ways to respond
to others’ reactions, and present different ways to disclose and tell one’s story. Levels of
disclosure are presented as (23):
“In my culture, we have to be warriors
in everything that we do…”
8
DISCLOSURE LEVEL
BENEFIT
COST
SOCIAL AVOIDANCE
Not telling anyone about your
mental illness and avoiding
situations where people may
find out about it. This could
mean working or living in a
sheltered or supported work
environment, where you only
associate with other people
with mental illnesses.
You don’t encounter people
who will unfairly harm you.
You lose the opportunity to
meet new people who may
possibly be supportive.
SECRECY
Participating in work and
community situations, but
keeping your mental illness a
secret.
Like social avoidance, you
withhold information about
your mental illness from
others. But, you don’t avoid
important settings like work
or the community in the
process.
Some people feel guilty about
keeping secrets. You may also
receive less support from others
because they are unaware of
your mental illness.
SELECTIVE DISCLOSURE
Disclosing your mental illness
to selected individuals, like
co-workers or neighbors, but
not to everyone.
You find a small group of
people who will understand
your experiences and provide
support.
You may disclose to some
people who then hurt you with
the information. You may have
difficulty keeping track of who
knows and who doesn’t.
INDISCRIMINANT
DISCLOSURE
Making the decision to no
longer conceal your mental
illness; this does not mean,
however, that you are telling
everyone your story.
You don’t worry who knows
about your problems. And you
are likely to find people who
will be supportive.
You may tell people who then
hurt you with the information.
BROADCAST YOUR
EXPERIENCE
Actively seeking out and
educating people about your
experience with mental
illness.
You don’t have to worry who
knows about your history of
mental illness. You are
promoting a personal sense of
empowerment in yourself.
You are striking a blow against
stigma.
You are going to encounter
people who may try to hurt you
with this information. You are
also going to meet people who
disapprove of your political
statement. (23, p.30)
9
A randomized controlled trial found that the intervention led to significantly decreased
disclosure-related distress and increased the perceived benefits of disclosure. Participants
reported that they found it helpful to realize that others had experienced similar struggles with
stigma and disclosure (4). All materials can be obtained for free on the Resources page of the
National Consortium on Stigma and Empowerment, www.ncse1.org.
Workbooks on the disclosure process that were developed specifically for youth with
disabilities are available from the National Collaborative for Workforce and Disability for Youth
(NCWD/Youth), http://www.ncwd-youth.info/. The NCWD/Youth emphasizes that disability
disclosure is a very personal choice and should be an informed one as well. The materials
provide structured exercises for goal setting, weighing the advantages and disadvantages of
disclosure, and how to disclose in educational, employment, and social and community settings
(24,25). The Strategic Sharing Workbook was designed by a youth who shared his story as part of
engaging in advocacy and who wished to help others in similar
pursuits. The workbook reviews a process for sharing lived
experience that helps individuals to stay safe from triggers and
negative experiences while being effective public speakers. There
is full acknowledgement that individuals are opening themselves
up to receiving stigmatized responses in relationships and by
potential employers. The personal growth and development that
may result is explored as well (26).
10
Peer Services
Peer workers by definition engage in self-disclosure. Sharing of recovery stories is regarded
as one of the major “recovery tools” of peer support providers. There is great healing power in
knowing that you are not alone (27). Consumer groups have maintained that such sharing
inspires, builds relationships, and gives new meaning and value to painful experiences. Being in
relationship with those who have faced similar challenges is known to help both parties sustain
healing and personal growth (28). Each person gives and receives in a fluid and constantly
changing manner in peer support relationships. Peers are by definition equals and power is
shared (29). The use of self-disclosure can create a climate of mutuality, foster trust, and instill
hope that life can get better. Peer support workers are valued for their authenticity as they can
relate to challenges and have found their way to recovery. This authenticity results in empathy
and connectedness. Hearing that someone has been there and back can result in a strong sense
of empowerment.
The shared lived experience may include discrimination, stigma, social exclusion, poverty,
and trauma. Peer support workers adopt a trauma-informed perspective and provide
opportunities for individuals to talk about what happened to them as opposed to what is wrong
with them (30). Peer support specialists have reported that the main personal benefits of such
work include support of one’s own recovery, increased self-confidence, feeling more
emotionally stable, being more satisfied with life in general, and increased interest in future
career opportunities (31).
Effective self-disclosure involves communication that change is possible and maintains a
focus on the person being supported. The purpose of self-disclosing is to benefit others. Self-
11
disclosure should be recovery-focused and should be mindful of trauma histories and
interpersonal boundaries (32). Certified Peer Specialists recommend the following for effective
communication of one’s recovery story:
Use where the person is in his/her own recovery journey to guide which parts of your
story to share.
Give careful consideration to the parts of your recovery story that may be helpful to the
person at this time in his/her recovery.
Be mindful Are you involving the person in the conversation of are you talking at
him/her?
Use brief snippets of your recovery story when applicable.
Remember The purpose of self-disclosing is to benefit others. The focus should not
stay on you for long. (33).
Veterans
The support group Vet to Vet was developed by Moe
Armstrong, a Vietnam veteran who was diagnosed with
schizophrenia. Mutuality is a key tenant of the group. It is
assumed that all those who attend have something to teach
and share as well as to learn. A central belief of the group is
that individuals can overcome shame and stigma through
disclosing experiences and sharing strength and hope. Asking
for help assists an individual with developing a voice and is
viewed as a form of empowerment (34). The program has been implemented at a range of
Veteran Administration locations including medical center clinics, community clinics, and
residential facilities (35). A randomized controlled study demonstrated that the program led to
clinical outcomes similar to those of standard treatment (36), while a quasi-experimental study
73%
22%
5%
Sexual
Orientation
heterosexual
GLBTQ2Spirit
Declined to say
Anonymous Survey Respondent
Demographics IV
12
found that the program resulted in higher empowerment and self-confidence outcomes
compared to standard care without peer support (37).
“Ending Self-Stigma” (ESS) is a structured 9-session group intervention designed to reduce
internalized stigma. The program includes a focus on the effects of societal stigma so as to
lessen personal responsibility for the negative social messages individuals may have received. A
pre-post assessment of the intervention found that participants drawn from two Veterans
Administration mental health sites reported significant reduction of internalized stigma and
increased appreciation for their personal strengths (12).
Policy and Procedures
A peer workforce will require the development of policies and procedures that hold positive
views of voluntary self-disclosure within the context of helping relationships. Decisions about
disclosure will need to be considered thoughtfully and be based on the needs of individuals
receiving services. Self-disclosure should remain a personal, voluntary choice (28) even while
work roles for individuals with lived experience continue to expand. Support for employing
individuals with lived experience will need to come from the top down. Those in management
will be required to communicate a depth of understanding of the value lived experience can
play in service delivery. There must be organizational commitment to involvement of
individuals with lived experience in every facet of services and workplace cultures must be
recovery focused. Policies of zero tolerance for discrimination will need to be developed and
enforced (38).
13
Employment
Decisions regarding disclosure of mental health
conditions to employers are especially difficult. As such
conditions are often non-apparent, individuals must make
conscious decisions regarding disclosure. The disclosure
decision presents a substantial risk to one’s career (39).
The potential of experiencing discrimination may lead
individuals to conceal their challenges and needs in order
to secure and maintain employment. However, not
disclosing prevents individuals from pursuing reasonable
accommodations that would allow them to be successful
in the workplace. Further, claims for discrimination due to disability issues can only be made
when an employer knew or ought to have known about the disability. Individuals may feel that
they are caught in a bind. Studies have found that a substantial percentage of individuals with
psychiatric disabilities are unaware of their civil rights under the American with Disabilities Act.
Having information about rights can itself be empowering and accord individuals with a sense
of self-determination. The threat of discrimination in the workplace needs to be balanced
against initiation of one’s rights (40). Indeed, employers in general rate applicants with perceived
mental health issues as less suitable employees compared to individuals with physical
disabilities or no disabilities (41). Research has indicated that of individuals with mental health
challenges who work, it is only those who do not experience work-related discrimination who
experience reduced levels of self-stigma and stigma stress (42).
41%
4%
11%
4% 6%
26%
7%
0%
5%
10%
15%
20%
25%
30%
35%
40%
45%
Main Work or
Volunteer
Role
Anonymous Survey Respondent Demographics V
14
While workplace disclosure is often viewed as simply a dichotomous choice between
disclosing or not disclosing, in actual practice the decision is not simple or straightforward. The
process of decision making involves weighing out the pros and cons of disclosure, examining
one’s values regarding how much of the self and experiences one reveals, and deciding what,
when, and to whom to disclose (43). Factors to be explored include job tasks, length of time on
the job, perceptions of job security, and whether or not accommodations such as flexible or
part time schedules naturally occur in the particular workplace. Examining the attitudes and
past experiences of employers in hiring and retaining workers with mental health disabilities is
useful. Consideration should be given to the timing of any disclosure (44).
Individuals who choose to disclose are advised to prepare for disclosure by practicing with a
trusted individual and composing a disclosure script that includes general information on the
disability, needed accommodations, and material on one’s strengths and qualifications.
Individuals are generally advised to state that they have
a medical disability and to avoid specific terms and
diagnoses. Disclosure can be on a need-to-know basis
and at times may involve only the human resource
department or individual supervisor. Individuals have
the right to disclose at any time during employment and
the right to never disclose (45,46).
Individuals with lived experience have stressed the
importance of stepping back to assess what one has to
gain from disclosing and then assessing the employer’s
3%
18%
16%
33%
30%
0% 10% 20% 30% 40%
Nondisclosed
Selective
disclosure
Open in most
places
Fully Out
Broadcast
Level of
Disclosure
Anonymous Survey Respondent Demographics VI
15
potential to meet the need. They recommend considering both the employer and the work
culture and reflecting on why one is considering disclosing. Many have expressed a strong
preference for not disclosing (47,48). Some regard information about mental health issues as too
personal to share in workplace settings or do not wish to burden others by talking about their
mental health (41). Individuals fear being viewed as incapable, unreliable, unpredictable, or even
dangerous. Individuals may choose to pass as “normal.” Nondisclosure provides the option of
simply blending in (39). For those also contending with homophobia, racism, and/or sexism, the
disclosure issue is even more complex (49).
In addition to obtaining accommodations, reasons for disclosure include desire to build
supportive relationships and workplaces, be a role model to others, alleviate the stress of
concealment, and explain symptoms or crises (41). A study of disclosure among professionals
and managers with psychiatric conditions employed in non-mental health settings found that
favorable circumstances leading to disclosure included the perception that employment was
secure, feeling appreciated by one’s supervisor, and feeling respected by colleagues. Reasons
not to disclose included wanting to be treated like everybody else, wanting to avoid biased
work evaluations and protect advancement potential, and wanting to maintain effective
collegial relationships (50). There appears to be no one correct approach to disclosure decisions
in employment contexts (39).
Conceal or Reveal (CORAL) is a decision aid on disclosure of mental health status to an
employer. It was developed to help individuals experience greater empowerment and less
avoidance regarding employment matters. A randomized control trial of the intervention
demonstrated that participants perceived increased empowerment (51). One employment
16
empowerment tool supported by consumers is the Workplace Advance Directive. It is a
document that provides guidance for other people in the event that an individual’s mental
health challenges affect working life. The Workplace Advance Directive includes what has been
helpful and unhelpful for an individual and suggestions for what to do in an emergency. The
documents can be effective communication tools but do not currently have legal authority (52).
Little empirical research has been conducted on the outcomes of disclosure. Longitudinal
studies that follow individuals over time in order to ascertain the effects of different disclosure
strategies are needed (41,53).
Providers
While those who work in mental health settings disclose to employers and co-workers at
higher rates than in other settings, (41), those who do face the very real risk of being perceived
as incompetent or weak. Individuals who choose to conceal their lived experience in order to
protect their professional reputation have expressed feeling that the strengths and
contributions they could make as a worker with mental health challenges could not be
recognized. Further, concealment served to perpetuate negative stereotypes (18). In one study
of mental health professionals with lived experience, most reported engaging in selective self-
disclosure in the workplace. Those who did not disclose described feeling like imposters with
their colleagues and worrying about being discovered (1). The most frequently cited reasons for
self-disclosure in the workplace appear to include having authentic relationships with
colleagues, decreasing stigma, and not wanting the stress of secret keeping (54).
“It was only because of disclosing that I have
been able to let go of the shame…
17
Individuals occupying traditional provider roles appear to engage in self-disclosure with
clients sparingly. Such disclosure has been found to be associated with client ratings of
therapists as more helpful, reports of increased insight into difficulties, and perceptions of
therapists as more real and human. Therapists apparently self-disclose more to clients who are
less symptomatic. This self-disclosure pattern may be due to an interest in maintaining clear
boundaries with individuals who are struggling (55).
The commonly held view that therapist self-disclosure should be minimized can be traced to
Freudian psychoanalysis. Freud was originally in training to become a surgeon. Psychoanalysis
was founded on medical standards of protective barriers between provider and patient
designed to prevent transmission of infection. Victorian cultural values and social norms
reinforced the scientific view regarding strict boundaries. Therapists became responsible for
protecting boundaries by not disclosing. They were to present as a “blank slate” or mirror that
reflected only the issues of the client. Those who are evaluating practice standards in this area
emphasize a focus on therapist motivation. Self-disclosure should be allowed when it supports
the client’s treatment. Further, a more flexible approach to self-disclosure is called for given the
range of cultural stances on sharing personal information. Regardless, a choice regarding self-
disclosure should be an active decision that is balanced against risk and should always be based
on what is in the best interest of the client (56).
While current psychodynamic practitioners continue to minimize the use of self-disclosure,
those who are grounded in humanistic and feminist approaches maintain that self-disclosure
can promote connection, mutuality, authenticity, and equality in the therapeutic relationship.
“Number one, self-disclosure should not be limited
to people who are in peer-identified roles…”
18
Unfortunately, professional ethics codes such as those of the American Psychological
Association do not provide specific standards that address self-disclosure (57). Current guidance
for psychiatrists on self-disclosure emphasizes that appropriate disclosure can strengthen the
treatment relationship and that a provider should disclose only to the extent that he or she is
comfortable (58). There appears to be minimal training available to providers on self-disclosure
as a clinical tool or on the decision making process (59). Therapeutic self-disclosure has long
been and continues to be highly controversial (60).
Higher Education
As youth transition from the K-12 education system, they leave a system in which they are
entitled to receive services and enter another system in which they may be eligible for
reasonable accommodations if they make their needs known and are covered by the American
Disabilities Act (ADA) and section 504 of the Rehabilitation Act. An accommodation is an
adjustment to the environment that makes it possible for an individual with a disability to
participate equally. It is not necessary for someone to share everything about a disability, just
how the disability impacts learning and performance and what environmental adjustments,
supports, and services are needed (61,62).
Students with psychiatric disabilities have reported a preference for non-disclosure.
Disclosure is perceived to involve multiple risks that include prejudice, rejection, and a negative
impact on capacity to find later employment. Many are not aware of reasonable
accommodations that could support their educational pursuits (63). In one study of the
experiences of college students with psychiatric disabilities, students expressed anxiety related
19
to disclosing as well as to not disclosing. Students reported receiving insensitivity, hostility, and
breaches of their confidentiality from some faculty. Other faculty appeared to have good
intentions but did not know how to respond to expressed needs. Some reported that due to
stigma, they used physical disabilities to explain their needs rather than disclose mental health
issues. The researchers noted a concern that some of the most learned individuals appeared to
have marked limitations in attitudes and knowledge (64).
Very little research has been conducted on the level of exclusion and challenges faced in
academic settings by doctoral students and faculty with psychiatric disabilities. Societal stigma
and stereotypes may lead to limited availability of mentoring and to questioning of ability to
engage in high quality teaching and research. Objectivity is valued in research and the motives
and capacities of the consumer researcher may be questioned (65). Indeed, it is generally
advised that individuals not disclose mental health challenges when applying for admission to
graduate programs (66). As those in academia are valued for their minds, disclosure of mental
health challenges in such settings could be characterized as antithetical. Judging by available
accounts, those academics who choose to disclose appear to do so only after very careful
scrutiny of their particular workplace culture and generally only after securing tenure (67). In
general, the involvement of individuals with lived experience in academic training appears to be
very limited and typically consists of guest lectures (68).
When teaching about mental health, academics with lived experience have an opportunity to
challenge stigmatizing beliefs and attitudes. In one study, academics with lived experience
found not disclosing to be emotionally draining and mentally unhealthy. They wished to
“It’s very contextual. It depends
on what the person is needing…”
20
normalize their mental health challenges as part of their broader life story and to provide the
personal meaning of their experiences, yet they were faced with the risks of being judged and
losing power and status. The long term consequences of not disclosing concerned perpetuation
of the individual with mental health challenges as the “other.” Study participants asserted that
the sharing of lived experience by an educator held much power and could promote student
learning. They emphasized that disclosure needed to benefit students rather than meet
personal needs (69).
Responses from Interviews and Focus Groups
Interviews and focus groups were conducted in person and by telephone with individuals
living in metro areas of the mid-Atlantic and the West and East Coasts and in rural areas across
the US (see Appendix B, SELF Focus Group/Interview Guide). A total of 35 individuals with lived
experience participated (see Table 1, Demographic Characteristics of Interview and Focus
Geographic locations of interview and focus group participants
21
Group Participants). Illustrative selections from responses to each question posed to the
individuals follow. Individuals speak to the complexity of disclosure and how decisions have to
do with context, the experiences and needs of others, and personal comfort levels. Whatever
the final decision made on disclosure, it is clear that individuals very much valued their lived
experiences and what they had to offer others.
GENDER
PARTNERSHIP STATUS
Female
19
Single
14
Male
15
Divorced
1
Transgendered
1
Partnered
6
Married
13
Decline
1
AGE
Mean
47
SD
10.86
SEXUAL ORIENTATION
Range
25-71
Heterosexual
23
LGBTQ2Spirit
9
Decline
3
ETHNICITY
Caucasian
23
Mixed Ethnicity
6
DIAGNOSIS
African American
4
Schizophrenia
1
Latino
1
Bipolar disorder
6
Decline
1
PTSD
5
Anxiety disorders
8
Dissociative Identity
Disorder
1
EDUCATION
Major depression
10
High School
5
Substance Disorder
5
Some College
6
Developmental Trauma
1
Associates Degree
2
In recovery
9
Bachelors Degree
11
Declined to provide
7
Masters Degree
7
PhD/MD
2
Decline
1
Table I. Demographic characteristics of Interview and Focus Group Participants
22
Sharing Lived Experience with Colleagues and Consumers
Question 1: In the context of your professional role, what has been your experience of sharing a
personal history of distress or mental health/addiction treatment with co-workers and
colleagues across different work settings?
Two peer providers had this to say:
“In terms of the credential of experts by experience, I
feel like that’s the most important credential we
have. We’re the evidence.”
“For me it’s been about context. I have chosen not to
disclose at times depending on where I’m working.
I’ve worked for places that are more traditional
mental health provider settings and just from
listening to the conversations I’ve made the decision
not to give a great amount of detail. Other places
where you know some of that’s going on but I feel
that these guys are receptive to learning a little bit of
that perspective, I’ll start sharing some of that. It
really has to feel kind of safe for me to do that. It
does take finesse to know what’s too much of a
story. I was pretty clunky at it for a long time but
hopefully I’ve gotten to a better place where I am
proud to share when asked or when I think that it’s
appropriate when it seems like somebody could use
some camaraderie or could benefit from not feeling
alone. I just am who I am at this point. It’s such a
natural ease in and out of that conversation.”
23
Clinicians with lived experience offered:
“If I got my paycheck from a consumer advocacy
group, I would have no problem whatsoever, but I’m
not, I’m a clinician. There is an unspoken us and
them, they’re the sick ones, we’re the clinicians.
We’re the helpers, they’re the helpees. We’re the
providers, they’re the consumers. This idea that I’m
both, even though absolutely true, we don’t really
have a place to settle yet.”
“Power dynamics have an impact on how much I
would ever share with a co-worker. I don’t share
much with supervisors. I have felt comfortable
sharing with some people in the same role as me. I
think it leads to rapport building for me, seeing co-
workers as human and as having a level of comfort
with their own stuff. I would never share with
anybody I supervise unless it was really intentional
and really specific. It would be related to something
that they were going through or for them to talk
about a way to work with something or work
through something or a way to navigate something
in the workplace.”
24
Individuals who had experience
working in medical settings stated:
“I haven’t disclosed. I’ve always hesitated because I
don’t want to be identified with my experience and
judged and looked at as less professional. I guess I
haven’t been able to disclose because of fear of
stigma. Having the experience as a patient going
through the system and then being on the other side
and having the perspective of a practitioner is
invaluable. You get to see both sides. I think by not
sharing that, it’s really inhibiting a really valuable
insight that could help both practitioners. You see it
from both sides…The disease model of experience
was not helpful for me. I worry that if I disclose my
take on resistance to psychopharmacology or things
like that I will be questioned as not being objective
because of my own lived experience…Not disclosing
adds to stress and anxiety and feeling not really
authentic in terms of coming into the profession. I
feel like I’m ignoring this really powerful source of
experience and passion. It definitely causes me a lot
of unease.”
“I come from a working class background and I’m
queer and I’m a woman. I definitely feel power
dynamics really heavily. That’s part of the reason I
didn’t disclose in a medical setting. In those kinds of
situations I don’t disclose because I feel like I have
too many strikes against me.”
25
Referring to experiences in academic
settings, two individuals shared:
“I disclosed due to my belief about disclosure leading
to destigmatization. Much harm is done by keeping
secrets. Isolation and secrecy about how one’s
feeling lead to more feelings of isolation and
difference. I wanted to change things for others. I
started disclosing to my students perhaps four years
ago and that has been largely positive. I just recently
started sharing more with academics and that feels a
little more dangerous, but I’m experimenting more
with that this year.”
“I approached the teacher and said, “Would you let
me tell you who I am? And I don’t want anything
from you other than will you hold that information
for me so that I know that somebody here knows
who I am. I don’t need you to intervene. I don’t need
you to say, ‘Oh, poor baby.’ I don’t need you to hold
me once in a while. I just want somebody to see me
based on this shared experience that we might
have.” It set the tone from me to becoming centered
in my body and mind as a clinician. It literally set the
stage for that because I was able to be true to
somebody.”
26
Question 2: What has been your experience of sharing a personal history of distress or service
use with the people who you serve in a professional role?
Individuals employed as peer specialists found great value in sharing their lived experience
when providing support and services.
“I think it’s one of the best things in the peer
specialist bag of tricks. It’s very helpful and it helps
establish a trust very quickly and people tend to look
at you as a genuine person who’s actually been there
which is a pretty cool thing.”
“My biggest strength in working with people is my
recovery story and what I’ve gone through and the
empathy that I have for people, how I can try to give
them hope, tell them what worked for me. My
recovery story is extremely powerful, and disclosing
it is also extremely powerful because it breaks
through the barrier and they realize that I’m not a
clinician, I’m not supervising them, I’m only there to
serve them and I’ve been in their shoes. That’s much
more powerful that saying I have this degree or that
degree.”
“I have never regretted it, ever. I’ve never had a
negative experience with disclosing. I feel like that is
the moment that we have made a true intimate
connection. We’ve moved from their usual
experience of this disengaged professional, I’m on
this side, you’re on that side, that kind of thing and
you share everything with me and I share nothing
with you. I’ve never had anyone who didn’t feel like
that was a breath of fresh air.”
27
Factors related to particular experiences and social and cultural issues
Question 3: How does your particular experience or that of the person you are working with
inform your decision about whether or how much to disclose?
“The way I disclose is informed by how I was able to
obtain a semblance of recovery. I look at things
through a different lens where I experience reality
differently than other people rather than I
hallucinate. I can see the positives in some of the
difficulties that I have as well as the negatives. I
really have a hard time using diagnostic language
because the system has been so hurtful to me. I just
meet people where they are instead.”
“I’m just grateful for the opportunity to be
able to do what I do and to be able to try to
encourage others and bring hope and share my
story. That in itself is a healing process. Sometimes
disclosure in itself is a healing process.”
“It’s about timing. If they are really struggling
with thinking about killing themselves, well, maybe
now is not the time for me to talk about all the
attempts that I’ve had but more about concentrating
my story on the other side, what life had to offer me
or something.”
“It’s very contextual. It depends on what the
person is needing, their viewpoints, and how
comfortable they are.”
28
A veteran stated:
Question 4: How does your own social or cultural background and that of those you work with
inform your decisions about disclosure?
“You want to know the way of life of this person, where they come
from, some of the demographic variables, socioeconomic situation,
maybe what part of the country they came from, what gender they
are, all those types of things might indicate a certain culture…Instead
of thinking in the back of your mind, what’s wrong with this person,
think more in terms of what happened to this person and think of their
symptomatology in terms of how they handle negative situations.
Instead of seeing a behavior as abnormal, try to see it instead as a
normal reaction to an abnormal situation. In terms of being justice
informed, be aware of the role of stigma and systemic barriers. Try to
keep all of those things in mind as you work with people so that you
don’t say anything insensitive.”
“They tend to shy away from the social workers who
have not had the benefit of serving in the service,
who have not had the benefit of going to war, who
have not had the benefit of understanding the
camaraderie that we share amongst each other as
brothers. They don’t understand the stress that we
feel. We feel that they understand case histories, but
we are those histories, we are those cases. We find a
common bond that brings a trust among one
another and so we can talk with each other. I don’t
feel that stigma, being oppressed or judged or
looked at in a different way. The majority of them
have been homeless, have been stigmatized, over-
medicated, and not really able to express themselves
fully. When I share my story, they can hear that I’ve
advanced from that to where I am today. I talk about
the things that I’ve had to do, sometimes reaching
out and taking that gamble and saying, “You know
what, I’m going to believe that this person has
something that they can add to help me get over
these hurtles that I’m trying to get past, to help me
live more of what is considered a normal life.””
29
An individual working in a
rural setting stated:
Speaking to their own cultural
backgrounds:
“We do outreach work in rural and frontier
communities and these are the places where
somebody has a nosebleed and everybody in town
knows within a couple of minutes. So community
members are often really uncomfortable going to a
place for service or being looked at in that way. So
the work I do really focuses on normalizing these
intense and difficult experiences and recognizing
how hard that can be and how intense it can be and
doing that in a non-pathologizing way.”
In my culture, we have to be warriors in everything
that we do. The cultural teachings are that being
able to share who you are and everything about you
will help open doors for others. My cultural
background is Native American. Teachings are very
strong from my elders and that’s what I use when
I’m sharing my story.”
“The African American and Caribbean American
community doesn’t necessarily talk openly about
mental illness so there’s really no external
encouragement to share. The general consensus is to
not even talk about it. I would talk about our
connection via the cultural background to show the
similarities to gain some credibility with them. Then
I would talk about my personal experiences and
educate why it’s important despite the cultural
norms to talk about what we’re dealing with in terms
of mental health.”
30
Recommendations
Question 5: What suggestions would you give a colleague who was considering disclosure to
co-workers and/or clients?
Responses to this question spoke to the complexity of the issue. There was an emphasis on
considering both the risks and benefits of disclosure and recognition that disclosure could
decrease shame and build hope. In the end, disclosure was a choice best left to an individual.
“People should think carefully about whether they
want to disclose. It would be nice if everyone could
be open about their mental health and addiction
challenges. But life is too complex and complicated
to say that we should all be open. We don’t know if
our decision to disclose will come back and bite us
later on. Sometimes, though, you have to take a risk.
You can’t grow without taking a risk.”
“Sharing something that gives someone hope is
never a bad idea. I will never forget the moment that
someone who did not look like their lived experience
shared, it changed my life because it gave me hope.
I won’t ever not take that opportunity if I believe it
would give someone hope. I want colleagues to have
hope for the people they serve, the hope of
recovery.”
“You don’t need to share everything. Be selective
about what you share. If you’re just staring out
sharing, share something small. Also, look at the
culture of the organization. Are they really recovery
based? If they are, people will be more open about
their experiences. If they aren’t, that’s a good sign to
know that they aren’t recovery oriented.”
31
Question 6: What suggestions would you give an organization to improve the culture for
workers with lived experience and enhance the safe and effective use of self-disclosure in
service delivery?
“I would tell an organization to recognize the
strengths peers can bring to programs.”
“Disclosure can be empowering or disempowering.
Do it from a place of “this is my choice.””
“You need to keep in mind that self-disclosure is a
choice, not a mandate.”
“It was only because of disclosing that I have been
able to let go of the shame…I think that disclosing is
the beginning of getting rid of the shame. It’s like
shining a light in the dark.”
“Being able to disclose has helped me a lot. I don’t
feel so much shame anymore. But think about why
you are disclosing and what you are disclosing.”
“The policy needs to apply to everyone, psychiatrists,
social workers, case managers and therapists and
the administrators. It’s not just a peer thing.
Sometimes disclosing is the one thing that connects
you with someone else that shatters the power
imbalance that is always present in the mental
health system.”
“Number one, self-disclosure should not be limited to
people who are in peer-identified roles. It’s getting
pathetic that it’s expected that people like us are the
ones who disclose and the others do not.”
32
Findings from the Anonymous Online Survey
An online survey that allowed individuals to contribute their views anonymously was
distributed through social media, consumer networks, and SAMHSA funded consumer Technical
Assistance Centers. The survey asked individuals about their volunteer and work roles, current
level of disclosure, and opinions regarding what to considering when disclosing. Individuals
addressed the benefits and risks of disclosure, suggestions to individuals who are considering
disclosure, and recommendations for organizations to improve the work culture and enhance
the effective use of disclosure of lived experience (see Appendix C for the SELF survey). 117
individuals with lived experience completed the survey in its entirety. Most worked in peer
delivered services but individuals also occupied advocate, case manager, clinician, academic,
and administrator roles. While a few individuals did not disclose or engaged in only selective
disclosure, the majority disclosed openly or even broadcast their lived experience by seeking
“If people get diversity training on other issues, they
should get diversity training about mental health
issues. Trying to understand privilege and
understanding that people who don’t identify as
having mental health issues are in the privileged
position. Understanding the biases and
understanding the circumstances that some of us
have lived through. Framing it as more like a
survivor, look at it as a strength that you have
survived this rather than as a weakness that you
have these challenges. We are trained to honor
cultural diversity, right? So what about being trained
to honor mental diversity?”
33
out and educating individuals on recovery. Peer service workers, advocates, and administrators
disclosed at the highest level followed by case managers and clinicians. Academics were the
most selective about disclosure.
Top considerations when considering disclosure to individuals to whom one was providing
support or services were:
1.
To benefit the other individual
2.
To inspire hope
3.
To help establish a connection and build the relationship
4.
To normalize the other individual’s experience or responses
5.
One’s own sense of safety or comfort with the disclosure
Top benefits of disclosure were considered to be:
1.
Bringing hope to others on recovery journeys
2.
Communicating that recovery is possible
3.
Providing living testimony against stigma
4.
Developing authentic relationships
5.
Learning from others with similar experiences
6.
Gaining pride in one’s identity
7.
Gaining a sense of personal power
The most concerning risks of disclosure were:
1.
Others may act to discriminate you in work, housing, and other areas
2.
Others will treat you as if you are fragile
3.
Others may act to exclude you from social settings
4.
Others will express disapproval
5.
Others may gossip or talk behind your back
34
A small number of veterans completed the survey. They rated the following factors as most
important when disclosing lived experience to another veteran:
1.
Sharing the strengths you used in recovery
2.
Sharing the supports developed for your recovery
3.
The importance of lived experience of military service in being able to support one
another.
Top suggestions regarding disclosure were:
1.
Consider your reasons for disclosure
2.
Consider how disclosure may benefit as well as potentially harm you
3.
Remember that disclosure is a personal decision. Don’t submit to pressure.
4.
Decide which parts of your experiences you will disclose
5.
Consider the safety of the environment in which you may disclose
Most important actions organizations could take to improve the work culture and enhance the
effective use of self-disclosure were:
1.
Provide training on the use of self-disclosure
2.
Strive for a work culture that acknowledges discrimination and attempts to reduce the
effects
3.
Educate all staff on the recovery approach.
Discussion
Self-disclosure has become recognized as a strategy for challenging stigma, promoting
empowerment, and supporting recovery journeys. Results of the SELF project were consistent
with the academic peer review literature as well as the grey literature produced by consumer
groups. Both bodies of work stress that self-disclosure is a complex process invested in power
35
and should be self-determined. Both maintain that disclosure of lived experience to individuals
receiving supports and services should be done for the benefit of the recipient. While self-
disclosure remains a controversial area for therapists who have little formal guidance to
reference, peers maintain that the sharing of lived experience is essential to the very approach
of consumer delivered services. Sharing one’s recovery story is valued for inspiring hope and
creating relationships that feature authenticity and mutuality.
SELF project participants highly valued what they could offer others based on their own
experiences of mental health challenges and recovery. Their experiences were their greatest
strengths in helping others. Ambivalence was expressed regarding disclosing to colleagues who
did not have lived experience of their own. Decisions on self-disclosure were dependent on
workplace culture, power dynamics, and type of role occupied. Clinicians and academics with
lived experience tended to be selective about disclosure given stigma and expectations
associated with their occupations. SELF participants emphasized that individuals should
carefully consider their reasons for disclosure, weigh the benefits and risks, and exercise self-
determination. They recognized that disclosure would not be right for everyone given the
existence of discrimination. However, some stated that despite the risk involved, it was only
through disclosing that they were able to let go of shame. Recommendations for organizations
included recognizing the strengths that peers bring to the work, providing training on mental
diversity and the use of self-disclosure, and creating disclosure policies that apply to everyone
regardless of particular role occupied.
Self-disclosure appears to present a paradox. Keeping lived experience to oneself can be
experienced as shaming while disclosing can lead to discrimination. Sharing lived experience
36
appeared to be one of the most healing acts one could engage in, yet being open about lived
experience could threaten one’s career in a healing profession. Disclosure may be the wisest
course of action for the group and the most foolish act for the individual.
Conclusion
Stigma is an injustice and its eradication should be prioritized by society. Viewing some of
the problems faced by individuals with mental illness as a social justice issue and focusing on
anti-stigma efforts such as disclosure has the potential to cause a great shift in the public
mental health paradigm (70,16). Some individuals with lived experience of mental health
challenges choose to take on stigma through self-disclosure and thereby make personal
contributions towards change. Those who self-disclose stand as evidence of recovery. Holding
the belief that recovery is possible communicates the hope that can be the catalyst of recovery
for many individuals (29). The power of hope should not be underestimated. Recovery involves
leading a high quality of life in a community and striving for one’s full potential. It does not
necessarily mean cure but concerns relationships, general well-being, empowerment, and
citizenship. The impact of social exclusion and injustices related to diversity issues of race,
culture, sexual orientation, class, disability, and mental states must be understood in order to
support recovery (30).
If people get diversity training on other
issues, they should get diversity training about
mental health issues…”
37
It is generally acknowledged that anti-discrimination legislation alone will not solve a societal
problem. A social policy perspective maintains that disclosure is a means of ensuring equal
access and protection from discrimination (63). Contact with individuals with lived experience
has been shown to decrease stigma and bring greater awareness to mental health issues in
society. The implications for individuals who disclose their experiences are not always so clear.
It is hoped that the more people with lived experience are willing to talk about their mental
health challenges, the less mental illness will be stigmatized and the more people will be
inclined to disclose (2). Disclosure holds great power. However, a one-size-fits-all approach to
disclosure will not meet the needs of the diverse population of individuals with lived experience
of mental health challenges. Disclosure is a complex process involving an ongoing cost-benefit
analysis. It is never as simple as a binary “disclose or not disclose” framework would suggest.
Given stigma and discrimination,
disclosure is very much a personal
decision. Future projects are needed to
develop a better understanding of how
diverse identities and issues of power
and status factor into self-disclosure.
Best strategies may differ given different lived experiences with both mental health challenges
and social standing. Sharing lived experience is central to peer-delivered services and further
exploration will be required to support service development.
38
Disclosure in the Workplace
There are several things to consider when thinking about disclosing in the workplace. Many
people have heard about the Americans with Disabilities Act (ADA). This is a federal law that
provides protections to people who have disabilities including people with psychiatric
disabilities. One reason to disclose that you have a psychiatric disability is to use the
protections given under the ADA.
The purpose of this section is not to tell you to disclose your mental health diagnosis but to
inform you of your rights in the workplace.
Language and Terminology
Let’s talk a bit about language here. Some people may not like the term “psychiatric disability.”
For purposes of exercising your rights under the ADA, you must have a disability as defined by
the ADA or meet the other requirement (such as being regarded as having a disability). The
language used to describe a mental health condition as a disability includes: mental disability,
mental impairment, or psychiatric disability. There may be other terms but these are the
People with lived experience of mental illness live with the reality of discrimination in the workplace. The risks
we take are real. We know that many individuals who are qualified to use the ADA and request
accommodations often do not use the ADA. One possible reason for not using the ADA may be a mistaken
belief that the ADA does not apply to people with or people regarded as having psychiatric disabilities. This is
not true. The ADA is available to people with psychiatric disabilities and those who are regarded as having
psychiatric disabilities.
Another reason for not using the ADA is that people may not know how to request an accommodation. The
following section aims to explain how to use the ADA. It is not intended as legal advice but to provide you
with general information about how the ADA may be useful to you. Having accurate information will be
helpful in your decision-making process.
This section is not intended as legal advice. The goal is to provide you with general information about your rights under the ADA.
39
primary terms. The ADA says that you don’t have to use these terms to request
accommodations.
Disability Definitions
Not everyone with a mental health condition is protected by the ADA. Also, Social Security’s
definition for disability is different than the definition according to the ADA. You can receive SSI
or SSDI from Social Security and that does not necessarily mean that you are qualified under
the ADA. You also can be protected under the ADA and not receive SSI or SSDI.
In order to be protected under the ADA, a person must be qualified for the job and have a
disability as defined by the law or be regarded as having a disability.
A person can show that he or she has a disability in one of three ways:
A person may be disabled if he or she has a physical or mental condition that
substantially limits a major life activity (such as walking, talking, seeing, hearing,
learning, thinking, caring for one’s self, interacting with others, processing information
and working).
A person may be disabled if he or she has a history of a disability (such as cancer that is
in remission or recovered from a psychiatric disability).
A person may be disabled if he is believed to have a physical or mental impairment that
is not transitory (lasting or expected to last six months or less) and minor (even if he
does not have such an impairment).
This section is not intended as legal advice. The goal is to provide you with general information about your rights under the ADA.
“Self-disclosure is a choice, not a mandate”
40
There are specific requirements about being recovered from substance abuse disorders and
being eligible for protection under the ADA. They are very technical and will not be covered in
this section. Consult your protection and advocacy agency in your state, or an attorney or talk
to someone at the Job Accommodation Network who is knowledgeable in this area.
Requirements under the ADA
In order to receive accommodations under the ADA, you must be able to perform the essential
duties of your job. Essential duties are the primary responsibilities for your position. Essential
duties of a job are informed by a job description but not dictated by a job description. Essential
duties are not always listed in your job description. Sometimes your job may change over time
and the essential duties may change, but your job description hasn’t changed or kept up to date
with the changes. Sometimes an organization may not have developed a job description for
your job.
Your privacy and the ADA
Before You Are Hired
The employer cannot ask about disability before you are hired unless you disclose before you
are hired. (Experts generally recommend that you not disclose before you are offered a job
unless you need an accommodation for the interview process).
An employer can always ask you how you will perform the job during the interview.
This section is not intended as legal advice. The goal is to provide you with general information about your rights under the ADA.
41
Once You Are Hired
An employer can require you to submit to a physical exam once you have been given an offer of
employment only if all other people who are hired for that kind of position are required to have
a physical exam.
If and only if you ask for an accommodation, then your employer can ask for some confirmation
of the disability. Your employer can request reasonable information about your disability and
the accommodation(s) you need.
Your employer can ask you or your doctor how the accommodation relates to your disability.
For example, if you requested an accommodation to start work at 11:00 a.m. rather than 9:00
a.m., your employer could ask: How does letting Alecia start work at 11:00 a.m. accommodate
her psychiatric disability? In other words, there must be a relationship between your disability
and the accommodation that you request.
Asking for an accommodation of a reserved parking spot near the door could be a reasonable
accommodation for a person with a physical disability that made it difficult for her or him to
walk long distances because there is a relationship between the disability and the
accommodation requested. However, it could be more difficult to show the relationship
between the accommodation and a person with a psychiatric disability. Your employer could
ask you or your doctor, “How does having a reserved parking space near the door
accommodate your psychiatric disability?” If you cannot show the relationship between the
requested accommodation and your disability, the employer doesn’t have to provide it.
This section is not intended as legal advice. The goal is to provide you with general information about your rights under the ADA.
42
You are required to provide reasonable information to your employer about your disability and
the accommodation that you are requesting. Reasonable information does not usually mean
your entire medical record or history. Reasonable information usually means only the
documentation that you have a disability and that you need an accommodation (and that there
is a relationship between the accommodation requested and your disability). Generally, you
won’t need to provide your diagnosis in order to have your disability accommodated.
If you provide medical records as documentation that
you have a disability, the medical records are to be
kept in a separate location away from your personnel
file.
If you have more than one disability, your employer
can only require information about the disability that
requires accommodation.
Requesting an Accommodation(s)
Informal Accommodations
Some people work in supportive environments where they can informally request an
accommodation just by asking. However, since informal accommodations are not usually
written down, they can disappear easily when a new policy is implemented or when a change in
personnel happens (e.g., such as getting a new supervisor). Informal accommodations also are
not generally enforceable under the ADA.
There is still a lot of controversy in the courts
about whether an employer can ask you to be
evaluated by a medical professional of their
choice. If your employer has a reasonable
concern that you cannot do the essential
functions of the job, the employer can in fact ask
you to undergo a medical evaluation. If you
refuse to undergo the evaluation, your refusal
can be a valid reason for your employer to
terminate you that is non-discriminatory.
This section is not intended as legal advice. The goal is to provide you with general information about your rights under the ADA.
43
Requesting Accommodations under the ADA
Requesting accommodations can be done at any time in the hiring process or after receiving a
job offer or while you are employed. You should request an accommodation when you know
there is a workplace barrier that prevents you from competing for a job, performing a job, or
gaining equal access to a benefit that other employees have. It is best to request an
accommodation before your job performance suffers or conduct problems occur because
employers do not have to retract discipline that occurred before they know about your
disability.
If you need an accommodation because of a disability, but don’t know what would be helpful,
the Job Accommodation Network has a Searchable Online Accommodation Resource (SOAR)
database. If you are looking at a print copy of this book, the URLs and contact information are
listed at the back book in the resources section of the book.
You can look up your disability and/or health condition or diagnosis and explore the types of
barriers that you might encounter and find possible accommodation solutions. This link will
take you directly to the page on mental health impairments in the SOAR database. Also, if you
have questions after exploring the database, you can always call and ask for technical
assistance. JAN has experienced staff who can help answer your questions. JAN is located in
West Virginia and is in the Eastern Time Zone.
Once you disclose that you have a disability and request an accommodation, an interactive
process begins. The employer is not required to provide the accommodation requested,
necessarily, but is required to engage in a process to figure out whether a reasonable
This section is not intended as legal advice. The goal is to provide you with general information about your rights under the ADA.
44
accommodation exists. If your employer does not participate in the interactive process, the
lack of participation is a violation of the ADA unless it is obvious that the disability could not be
accommodated in any reasonable way.
¿Sabe usted acerca de la Job Accommodation Network?
JAN se habla español. El Job Accommodation Network o
JAN provee asistencia técnica a las personas con
discapacidades y los empleadores sobre la acogida de
los diferentes tipos de discapacidad. Echa un vistazo a
su página web o llamar al número gratuito (800) 526-
7234 (voz) o (877) 781-9403 (TTY). Si llama a JAN,
recuerde que están en la zona horaria del este. JAN es
Do you know about the Job Accommodation Network?
The Job Accommodation Network or JAN provides
technical assistance to people with disabilities and
employers on accommodating different types of
disabilities. Check out their webpage or call them toll
free at (800) 526-7234 (voice) or (877) 781-9403 (TTY).
. If you call JAN, remember they are in the Eastern time
zone. JAN is also on Twitter @JANatJAN and Facebook
This section is not intended as legal advice. The goal is to provide you with general information about your rights under the ADA.
45
Retaliation
The ADA forbids employers from retaliating. If you believe you have been retaliated against for
requesting an accommodation consult an attorney or the Equal Opportunity and Employment
Commission (EEOC).
Choosing Not To Disclose
If you choose not to disclose that you have a disability because you are not asking for
accommodations and something happens that looks like misconduct and you are fired, it may
be difficult to get your job back. Employers are not liable for discrimination if they were not
formally notified that the person had a disability.
Times When the ADA Does Not Apply
There are times when you have a disability and are having difficulties in the workplace when
the ADA does not apply. If your employer has fewer than 15 employees, the organization you
work for does not have to provide accommodations under the ADA. However, your state may
have a state law that has a different standard that may provide you some protection.
If your employer believes that an accommodation creates an undue hardship, the employer is
not required to provide the accommodation. However, most accommodations cost very little
to provide.
This section is not intended as legal advice. The goal is to provide you with general information about your rights under the ADA.
46
Suicide Attempts and the ADA
If an employer discovers that you have attempted suicide, your employer may take a variety of
actions. Even if you have a doctor’s note that allows you to return to work, they may ask you to
see a medical expert of their choosing. The courts have generally allowed this. They also may
fire someone who has attempted suicide. The courts have generally frowned on employers
firing people after attempting suicide. Also, attempting suicide does not necessarily mean that a
person has a psychiatric disability. Some courts (but not all) have said that a suicide attempt is
equivalent to a psychiatric disability. Often times, this can lead an employer to regarding you as
a person having a disability.
Other Federal Laws That May Be Helpful to You
Depending on your circumstances two other federal laws may also offer you some help when
requesting accommodations. Sections 503 and 504 of the Rehabilitation Act of 1973 also called
“The Rehab Act” may offer some people additional protections under the law. To learn more
about Sections 503 and 504 of the Rehab Act, click here. The Family and Medical Leave Act,
more commonly called FMLA may also offer you some assistance when requesting an
accommodation. You can learn more about FMLA here. These federal laws can often work
together to help you with your accommodation.
State Laws
You should also keep in mind that many states have state laws about disabilities and family
medical leave. You may have additional rights under state laws. Check with your local
This section is not intended as legal advice. The goal is to provide you with general information about your rights under the ADA.
47
protection and advocacy organization about state disability protections and other laws that
may help you be successful at work.
It’s pretty easy to request an accommodation. According to the EEOC you can use “plain
language” to request an accommodation. You don’t have to use the terms disability or
reasonable accommodation, or mention the ADA. We have provided some examples of how
you might request an accommodation from your supervisor or boss. Remember that for an
accommodation to be considered reasonable, it must be related to your disability and it must
not be burdensome to your employer. Employers are not required to provide the exact
accommodation you requested if there is another suitable accommodation.
I need to come in at 10:00 because I’m taking medication that makes it really hard for
me to get here on time. This could be an example of a request for a reasonable
accommodation.
I need a quiet place to do my paper work because I get distracted really easily. Too many
distractions make it difficult for me to do my paperwork correctly.
This could be an example of a request for an accommodation. Your supervisor may
need more information because it is not clear how distraction is related to a medical
condition or disability. This is where you may want to provide a letter from an
appropriate healthcare professional.
I need to take next week off because my medication is being adjusted and I don’t know
how it will affect me. This could be a request for a reasonable accommodation.
This section is not intended as legal advice. The goal is to provide you with general information about your rights under the ADA.
48
Sometimes, if you belong to a
union, what would otherwise
be a reasonable
accommodation might not be
considered reasonable
because it would breach (or
break) the employer’s
obligations to other workers
under the union agreement.
I get overwhelmed when I am given so many things to do. I have difficulty figuring out
what’s most important and can’t get organized.
This could be another example of a request for an accommodation. Your supervisor may
need more information because it is not clear how the lack of organization and
prioritization is related to a medical condition or disability.
I have a service dog (or animal) that helps me with my disability. I need to bring him/her
to work with me.
This could be another example of a request for a reasonable accommodation. This page
on the JAN website specifically talks about service animals.
The JAN website provides an example letter and ideas for requesting accommodations. If you
find these tools helpful, use them.
How long does my employer have to respond to my disability request?
The ADA does not specify a specific time for employers to respond.
However, they should respond as quickly as possible. You could also ask
for a written response within 10 business days (which is about two
weeks).
If your employer doesn’t respond within a reasonable period of time,
the EEOC could view the unnecessary delay as a violation of the ADA.
This section is not intended as legal advice. The goal is to provide you with general information about your rights under the ADA.
49
Are there limits to the accommodation requests that I can make?
Yes. You are entitled to “reasonable”
accommodations. See the text box for
examples of reasonable accommodations or
check out the JAN website for examples
according to the type of disability or
psychiatric diagnosis. Some accommodations
will work for more than one type of disability
or psychiatric diagnosis. That is okay. Ask for
accommodations that will help reduce the barriers to working successfully.
There are some things that are not considered forms of reasonable accommodation under the
ADA.
Removing or eliminating an essential job function
Lowering production standards
Providing personal items such as glasses, wheel chair, prosthetic limbs, hearing aids or
similar devices if they are also needed off the job.
Employers only have one reason they can legally deny an accommodation. They can deny an
accommodation if the change or modification required would create “an undue hardship.” An
“undue hardship” is based on the resources and circumstances of a particular employer in
relationship to accommodating a specific employee. For example, if you work for a small
Examples of Reasonable Accommodations
making existing facilities accessible
job restructuring
part-time or modified work schedules
acquiring or modifying equipment
changing tests, training materials, or policies
providing qualified readers or interpreters
reassignment to a vacant position
medical leave
work from home
This section is not intended as legal advice. The goal is to provide you with general information about your rights under the ADA.
50
employer (between 15 and 50 employees) compared to a medium employer (51-500
employees), or a large employer (501 or more employees), accommodations that cause an
“undue hardship” will be different.
According to a study by the Job Accommodation Network (71) many employers were able to
provide accommodations to their employees with disabilities for little to no cost. Others were
able to provide accommodations for a one-time expenditure of $500. Many employers were
interested in retaining their employees with disabilities. To read more about the cost to
employers for accommodating their employee’s disabilities, check out JAN’s website.
The Bottom Line
Requesting accommodation(s) due to a disability is your choice. No one can make you request
accommodation(s) when you have a disability. The goal of receiving accommodations is to
make it easier for you to be successful in the work place.
Disclose when you need an accommodation
Know who to disclose to (follow the instructions in your employee handbook, if you
have one or disclose to your supervisor or the H.R. manager.
Don’t wait until you have received notice that there is a problem with your work
performance. Your employer does not have to rescind work notices that were issued
prior to their being told that you have a disability that requires accommodation.
This section is not intended as legal advice. The goal is to provide you with general information about your rights under the ADA.
51
Once you disclose an interactive process should begin. This is also the point where you
may be asked to provide documentation of your disability.
Remember to not disclose too soon. Your employer only needs basic information about
your condition, your limitations and the accommodations that you need. Some people
may think that they need to tell them everything about their condition. This is not true.
You are entitled to your privacy. You only need to tell what is necessary.
Remember to choose carefully to whom you disclose that you have a disability. You
don’t have to tell your coworkers why you are leaving early or have a different schedule
than they do. Your manager and supervisor are required to keep your disability and
medical records confidential and provide it only on a need to know basis.
We would like to thank Susan Stefan, JD for reviewing this section of the guidebook. Any
mistakes are the authors.
This section is not intended as legal advice. The goal is to provide you with general information about your rights under the ADA.
52
Appendix A
Sharing Experience Learned Firsthand (SELF) Focus Group/Interview Guide
The purpose of this focus group/interview is to gain insight into self-disclosure practices in
mental health settings for the purpose of developing educational materials to support ethical
and effective practices. Specifically, we are exploring the sharing of lived experience of distress
and mental health/addiction service use, both between colleagues and in service delivery. We
are interested in the benefits and risks of this practice, and the effect it has on workplace
climate, service user experience and mental health system transformation.
Sharing Lived Experience with Co-workers and Colleagues
1. In the context of your professional role, what has been your experience of sharing a
personal history of distress or mental health/addiction treatment with co-workers and
colleagues across different work settings?
What factors are involved in your choice to disclose to co-workers?
(e.g. professional role (peer specialist, clinician) role modeling; professional socialization;
workplace culture, presence of disclosed peers; supervisor support; need for
accommodations; recovery status (length of time, presence of ongoing difficulties);
nature of distress or service use; (e.g.childhood trauma, suicidal thoughts, psychosis)
In your experience, what effects (positive and negative) has your choice to disclose to
colleagues had on your work and within your workplace?
(e.g. co-workers perception of you; influence on discussions or policies)
Sharing Lived Experience with Service Users/Consumers in a Professional Role
2. What has been your experience of sharing a personal history of distress or service use with
the people who you serve in a professional role?
What factors are involved in your choice to disclose to the people you serve in your
professional role?
(e.g. towards what purpose; professional socialization; organizational policies;training;
factors about the person; degree of rapport )
53
In your experience, what effects (positive and negative) has your choice to disclose your
own experiences of distress, service use and/or recovery had on the people you have
served?
Experiential, Social and Cultural Factors
3. How does your particular experience or that of the person you are working with-for
example: trauma, addiction, suicide attempt or psychosis-inform your decision about
whether or how much to disclose?
4. How does your own social or cultural background--and that of those you work with--
inform your decisions about disclosure?
Recommendations
5. What suggestions would you give a colleague who was considering disclosure to co-
workers/and or clients?
6. What suggestions would you give an organization to improve the culture for workers with
lived experience, and enhance the safe and effective use of self-disclosure in service delivery?
54
Appendix B
Anonymous SELF Survey
Welcome
Welcome to the Sharing Experience Learned Firsthand (SELF) survey, a project of the Lived Experience Research
Network. The purpose of the survey is to gain insight into self-disclosure practices in mental health settings for the
purpose of developing educational materials that support effective practices. We are exploring the sharing of lived
experience of distress and mental health service use between colleagues and in service delivery. We are interested
in both the risks and benefits of self-disclosure and the impact on relationships, recovery, and the workplace.
Information for Participation
Project Personnel
Casadi "Khaki" Marino, LCSW, LERN network member
Beckie Child, MSW, LERN Interim Executive Director
Vanessa Krasinski, BSN, LERN network member
You are being asked to participate in this survey as you have lived experience with mental health service use and/or
challenges/extreme states/madness, have volunteered or worked in peer services, mental health services, advocacy,
or related academia, and are aged eighteen or older. If you agree to participate, you will be asked to complete an
anonymous survey. The survey includes questions related to self-disclosure such as factors involved in your decision
making and recommendations you may have. We also ask for information about you such as your gender, age, and
race or ethnicity. The survey is completed online. If there is a question you do not wish to answer, you may skip it.
The survey will take 15-30 minutes to complete. Your information will remain anonymous.
Your participation is voluntary. There will be no negative consequences for not taking the survey.
If you have questions or concerns or simply wish to provide your input, please contact Casadi "Khaki" Marino at
casadi@pdx.edu.
Q1
What is your main work or volunteer role?
peer services worker
case manager
clinician
academic
advocate
other
55
Q2
How would you describe your current level of disclosure of lived experience with mental health service use and/or
challenges/extreme states/madness? Please choose the option that most closely matches your decision.
Non-disclosed: participating in work and community settings but not disclosing your mental health experiences
Selective workplace disclosure: disclosing as needed for workplace accommodations
Selective colleague disclosure: disclosing to selected colleagues in select contexts only
Selective service user disclosure: disclosing to selected service users in select contexts only
Open in most places that you have a mental health history, but not open on specifics
Open in most places that you have a mental health history, but that you do not wish to be identified with the
history
Full disclosure: disclosing to both service users and colleagues and across life domains
Broadcast: actively seeking out and educating people about your experiences
If you would like to expand on your answer, please do so
If Non-disclosed: participatin... Is Selected, Then Skip To How concerning are the following pote...
Skip
Logic
Q7
When considering disclosing your own lived experience with an individual to whom you provide support or services,
how important are the following considerations?
not important
somewhat
unimportant
neither
unimportant of
important
somewhat
important
very important
Disclosure will benefit the other
individual
Your own sense of safety or
comfort with the disclosure
The current environment of the
disclosure
Disclosure will normalize the other
individual's experiences or
responses
Disclosure will help establish a
connection and build the
relationship
Disclosure will inspire hope
Q3
56
How important are the following potential benefits of disclosing a mental health challenge and/or history?
not important
somewhat
unimportant
neither
unimportant or
important
somewhat
important
very important
No longer having to worry about
hiding or keeping a secret
Gaining support from others
Letting go of shame
Learning from others with similar
experiences
Gaining a sense of personal power
Providing living testimony against
stigma
Gaining pride in one's identity
Increased self-worth
Developing authentic relationships
Accessing employment in peer
delivered services
Communicating that recovery is
possible
Bringing hope to others on
recovery journeys
Q4
How concerning are the following potential risks of disclosing a mental health challenge and/or history?
not concerning
somewhat
unconcerning
neither
unconcerning or
concerning
somewhat
concerning
very concerning
Others will express disapproval
Others may gossip or talk behind
your back
Others may act to exclude you
from social settings
Others may act to discriminate
against you in work, housing, and
other areas
You will worry about what others
think of you
Family and/or friends will be upset
that you disclosed
57
not concerning
somewhat
unconcerning
neither
unconcerning or
concerning
somewhat
concerning
very concerning
You will be more self-conscious
about your functioning
Others will treat you as if you are
fragile
Others will regard you as
potentially dangerous
Family and/or friends will
experience negative effects from
your disclosure
You will burden others with your
issues or needs
Relapses may become more
problematic and more difficult to
hide
Disclosure will interfere with the
service user's therapeutic process
Q18
Are a veteran?
Yes
No
If No Is Selected, Then Skip To What suggestions would you have for a...
Skip
Logic
Q19
How important are the following factors in disclosing to another veteran?
not important
somewhat
unimportant
neither
unimportant or
important
somewhat
important
very important
Sharing the strengths you used in
recovery
Sharing the supports developed for
your recovery
Concern that information shared
may be used against you in the
system
Not wanting to relive difficult
times
Not wanting to engage in war
stories
58
not important
somewhat
unimportant
neither
unimportant or
important
somewhat
important
very important
Concern that you will not be able
to help another manage the effects
of trauma
The importance of lived
experience of military service in
being able to support one another
Q5
What suggestions would you have for a friend or colleague who was considering disclosing a mental health challenge
and/or history (check all that apply):
Consider how disclosure may benefit as well as potentially harm you.
Decide which parts of your experiences you will disclose
Consider selective disclosure (disclosure to select individuals and select contexts)
Do not disclose
Consider your reasons or goals for disclosure
Consider the safety of the environment in which you may disclose
Create strategies for coping with negative responses
At first disclose only to individuals who you can identify as likely to understand and empathize
Remember that disclosure is process, not an event
Remember that disclosure is a personal decision. Don't submit to pressure
Consider the power of disclosure
Disclose only as needed
Q6
Thinking about what an organization could do to improve the work culture and enhance the effective use of self-
disclosure of lived experiences, please enter a number to rank the importance of the following, with 1 being MOST
IMPORTANT and 6 being LEAST IMPORTANT.
1Provide training on the use of self-disclosure
2Strive for a work culture that acknowledges discrimination and attempts to reduce the effects
3Educate all staff on the recovery approach
4Include mental diversity in diversity training
5Address acts of sanism (oppresion against people who have, or who are labelled or perceived as having, a mental
illness) such as the use of discriminatory language
6Create policies and procedures regarding the use of self-disclosure that apply to everyone
Q8
59
What gender do you identify as?
Male
Female
Transgender
Please provide below
Prefer not to disclose
Q9
What is your age?
Please provide
Q11
What is your race/ethnicity?
Caucasian
African American
Asian/Pacific Islander
Native American/Alaskan
Latino
Mixed Race
Please provide below
Q16
Setting in which you live
Urban
Small town
Suburb
Rural
Frontier
60
Q17
Please provide your zip code:
Click to write Choice 1
Q12
What is your formal educational background?
Did not graduate high school
Graduated high school/earned GED
Trade School
Attended college
AA/AS
BA/BS
Masters
Doctorate
Q13
What is your partnership status?
Single
In a relationship
Married
Divorced
please provide below
Q14
Your sexual orientation?
Straight/Heterosexual
LGBTQ2Spirit
Please provide below
Prefer not to answer
61
Q15
Optional: current diagnosis/diagnoses or language with which you identify:
Please provide below
62
Appendix C
References
1.Bennett, C. A. (2012). The stigma of mental illness as experienced by mental health
professionals as patients: A phenomenological study. (Doctoral dissertation). Retrieved from
Pacifica Graduate Institute.
2.Corbiere, M., Samson, E., Villotti, P., & Pelletier, J. F. (2012). Strategies to fight stigma toward
people with mental disorders: Perspectives from different stakeholders. The Scientific World
Journal, 1-9.
3.Ralph, R. O. (2002). The dynamics of disclosure: Its impact on recovery and
rehabilitation. Psychiatric Rehabilitation Journal, 26(2), 165-172.
4.Rüsch, N., Abbruzzese, E., Hagedorn, E., Hartenhauer, D., Kaufmann, I., Curschellas, J., ... &
Corrigan, P. W. (2014). Efficacy of Coming Out Proud to reduce stigma’s impact among
people with mental illness: Pilot randomized controlled trial. The British Journal of
Psychiatry, 204(5), 391-397.
5.An, Z., & McDermott, V. M. (2014). The effects of sociocultural factors and perceptions of
mental illness on indirect disclosure preferences. Communication Research Reports, 31(3), 281-
291.
6.Corrigan, P., & Matthews, A. (2003). Stigma and disclosure: Implications for coming out of the
closet. Journal of Mental Health, 12(3), 235-248.
7.Wood, L., Burke, E., Byrne, R., Pyle, M., Chapman, N., & Morrison, A. (2014). Stigma in
psychosis: A thematic synthesis of current qualitative evidence. Psychosis,1-14, online.
8.Corrigan, P. W., Larson, J. E., Hautamaki, J., Matthews, A., Kuwabara, S., Rafacz, J., Walton, J.
Wassel, A., & O’Shaughnessy, J. (2009). What lessons do coming out as gay men or lesbians
have for people stigmatized by mental illness?. Community Mental Health Journal, 45(5),
366-374.
9.Repper, J., & Carter, T. (2011). A review of the literature on peer support in mental health
services. Journal of Mental Health, 20(4), 392-411.
10.Rogers, E. S., Teague, G. B., Lichenstein, C., Campbell, J., Lyass, A., Chen, R., & Banks, S.
(2007). Effects of participation in consumer-operated service programs on both personal and
63
organizationally mediated empowerment: results of multisite study. Journal of Rehabilitation
Research and Development, 44(6), 785-799.
11.Bos, A. E., Kanner, D., Muris, P., Janssen, B., & Mayer, B. (2009). Mental illness stigma and
disclosure: Consequences of coming out of the closet. Issues in Mental Health Nursing, 30(8),
509-513.
12.Lucksted, A., Drapalski, A., Calmes, C., Forbes, C., DeForge, B., & Boyd, J. (2011). Ending
self-stigma: Pilot evaluation of a new intervention to reduce internalized stigma among
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69
Appendix D
Resources
Equal Employment & Opportunity Commission (EEOC) http://www.eeoc.com/
Job Accommodation Network (JAN) http://www.askjan.org/
¿Sabe usted acerca de la Job Accommodation Network?
JAN se habla español. El Job Accommodation Network o
JAN provee asistencia técnica a las personas con
discapacidades y los empleadores sobre la acogida de
los diferentes tipos de discapacidad. Echa un vistazo a
su página web o llamar al número gratuito (800) 526-
7234 (voz) o (877) 781-9403 (TTY). Si llama a JAN,
recuerde que están en la zona horaria del este. JAN es
Do you know about the Job Accommodation Network?
The Job Accommodation Network or JAN provides
technical assistance to people with disabilities and
employers on accommodating different types of
disabilities. Check out their webpage or call them toll
free at (800) 526-7234 (voice) or (877) 781-9403 (TTY).
. If you call JAN, remember they are in the Eastern time
zone. JAN is also on Twitter @JANatJAN and Facebook
... Self-disclosure and the sharing of lived experience stories are important strategies for challenging stigma and promoting empowerment [26]. Since the creative workshops, participants reported increased confidence in sharing their recovery stories more widely. ...
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