Lesson 14: Consumer Movement Readings: Video: “People Say I’m Crazy http://www.youtube.com/watch?v=VdzHl65XPYc Campbell, J. (2005). The historical and philosophical development of peer-run support programs. In Clay, S., Schell, B., Corrigan, P. W., and R. O. Ralph (eds.) On Our Own Together: Peer Programs for People with Mental Illness. Nashville, TN: Vanderbilt Press. 17-64. The President’s New Freedom Commission on Mental Health (March 5, 2003). “Summary Report of the Subcommittee on Consumer Issues: Shifting to a Recovery-Based Continuum of Community Care.” http://www.power2u.org/downloads/consumers_issues_summary.pdf Introduction Consumers of mental health services have sought to find their voice for a long while. As early as 1873, Mrs. E.P.W. (Elizabeth) Packard published her book entitled, Modern Persecution, or Insane Asylums Unveiled. Forcibly committed to a psychiatric institution by her husband, Mrs. Packard was an early advocate for establishing rights for patients with mental disorders, founding the Anti-Insane Asylum Society in Illinois (Chamberlin, 1990). Other persons, however, were speaking out about the rights of patients with mental disorders, probably the most well-known of whom was Clifford Beers. As you may recall from Lesson 2, Beers founded the National Committee for Mental Hygiene, now called Mental Health America, in 1909. His important autobiography, A Mind That Found Itself, published in 1908 and still in print, chronicled his experiences with mental illness. He started the first outpatient mental health clinical in New Haven, Connecticut in 1913. While these historical occurrences displayed an early preface to activism for persons who experienced mental illness, the modern consumer movement did not start until almost a century later. Consumer/Survivor movement The modern consumer/survivor movement is an outgrowth of the reorganization of the mental health system from the 1950’s through the 1970’s. This reorganization resulted from “deinstitutionalization, new psychotropic drug treatments, the widening legal conceptions of patients’ rights, and the intellectual critiques associate with the antipsychiatry movement” (Tomes, 2006, p. 722). The first consumer/survivor group was founded sometime during the late 60’s or early 70’s, and was called the Oregon Insane Liberation Front, taking its cue from other liberation movements that were prevalent during that time. As we saw in Lesson 11, stigma has been a difficult problem for those with serious mental illness (SMI) to overcome. Green-Hennessy & Hennessy (2004) note that psychiatric symptoms are only some of the problems faced by persons with mental illness. Persons with mental illness also are feared and discriminated against by society, their rights are not valued and their opportunities limited, and “the mental health system . . . at times has undermined the very healing it attempts to promote” (Green-Hennessy & Hennessy (2004, p. 88). This ...

1. Lesson 14: Consumer Movement
Readings:
Video: “People Say I’m Crazy
http://www.youtube.com/watch?v=VdzHl65XPYc
Campbell, J. (2005). The historical and philosophical
development of peer-run support programs. In Clay, S., Schell,
B., Corrigan, P. W., and R. O. Ralph (eds.) On Our Own
Together: Peer Programs for People with Mental Illness.
Nashville, TN: Vanderbilt Press. 17-64.
The President’s New Freedom Commission on Mental Health
(March 5, 2003). “Summary Report of the Subcommittee on
Consumer Issues:
Shifting to a Recovery-Based Continuum of Community Care.”
http://www.power2u.org/downloads/consumers_issues_summary
.pdf
Introduction
Consumers of mental health services have sought to find their
voice for a long while. As early as 1873, Mrs. E.P.W.
(Elizabeth) Packard published her book entitled, Modern
Persecution, or Insane Asylums Unveiled. Forcibly committed
to a psychiatric institution by her husband, Mrs. Packard was an
early advocate for establishing rights for patients with mental
disorders, founding the Anti-Insane Asylum Society in Illinois
(Chamberlin, 1990).
Other persons, however, were speaking out about the rights of
patients with mental disorders, probably the most well-known of
whom was Clifford Beers. As you may recall from Lesson 2,
Beers founded the National Committee for Mental Hygiene, now
called Mental Health America, in 1909. His important
autobiography, A Mind That Found Itself, published in 1908
and still in print, chronicled his experiences with mental illness.
He started the first outpatient mental health clinical in New

2. Haven, Connecticut in 1913.
While these historical occurrences displayed an early preface to
activism for persons who experienced mental illness, the
modern consumer movement did not start until almost a century
later.
Consumer/Survivor movement
The modern consumer/survivor movement is an outgrowth of
the reorganization of the mental health system from the 1950’s
through the 1970’s. This reorganization resulted from
“deinstitutionalization, new psychotropic drug treatments, the
widening legal conceptions of patients’ rights, and the
intellectual critiques associate with the antipsychiatry
movement” (Tomes, 2006, p. 722). The first consumer/survivor
group was founded sometime during the late 60’s or early 70’s,
and was called the Oregon Insane Liberation Front, taking its
cue from other liberation movements that were prevalent during
that time.
As we saw in Lesson 11, stigma has been a difficult problem for
those with serious mental illness (SMI) to overcome. Green-
Hennessy & Hennessy (2004) note that psychiatric symptoms
are only some of the problems faced by persons with mental
illness. Persons with mental illness also are feared and
discriminated against by society, their rights are not valued and
their opportunities limited, and “the mental health system . . . at
times has undermined the very healing it attempts to promote”
(Green-Hennessy & Hennessy (2004, p. 88). This societal
reaction to persons with SMI has denied them meaningful
employment, housing and educational opportunities, those
things that help to provide stability and worth in our lives, and
that most of us who do not have a mental disorder take for
granted.
What factors, then have begun to change conditions for person
with mental illness? First, the more recent concepts of recovery
and wellness have helped consumers to find meaning and
opportunities to improve their lives. A couple of evidence

3. based practices, most notably, self-help groups and the peer
specialist program, have also played important roles in
expanding the prospects for consumers.
Recovery
A key concept that followed the consumer movement in the
1980’s and 1990’s is that of recovery. Recovery suggests more
than psychiatric/medical intervention. As Swarbrick & Brice
(2006) wrote:
The medical model focuses on symptom reduction: rapid
stabilization and interventions based on deficiencies and
incapacity. In this deficit-based approach, individuals are seen
in terms of their illness. Often overlooked are people’s
interests, skills, abilities, and potential to achieve personal
goals (Swarbrick, 2006). This narrowed focus often exacerbates
the illness rather than promotes recovery (p. 103).
Anthony (1993) noted that while the concept of recovery was
familiar in physical illness and rehabilitation, it was relatively
recently applied to mental illness. He notes that, similar to
individuals with physical handicaps, recovery from mental
illness does not mean that a person is “cured,” and he suggests
that the concept is multidimensional. Included in the concept
are such dimensions as “self-esteem, adjustment to disability,
empowerment and self-determination (p. 16). Anthony
postulated that, based on his views, eight assumptions could be
made about recovery.
1. Consumers are key to recovery and recovery can happen
without intervention by professionals. Recovery can be
facilitated by professionals, families, self-help groups, in short,
the consumer’s natural support system.
2. “A common denominator of recovery is the presence of
people who believe in and stand by the person in need of

4. recovery.”
3. No matter what the cause of mental illness (biological and/or
psycho-social), recovery can occur.
4. Recovery can happen despite the reappearance of symptoms.
5. Changes in symptom duration and strength may occur as an
individual recovers.
6. Recovery may not feel like a linear process. Recovery
involves progress and delays, times when change is fast and
when it does not occur.
7. The results of the illness are sometimes harder to recover
from than the illness itself. The loss of rights, roles, self-
esteem, and other problems can be difficult to overcome.
8. Individuals who successfully recover from severe mental
illness, have, nonetheless, had mental disorders. This is not an
anomaly.
Since this definition of recovery was developed, the concept has
been described in many ways. One accepted definition is to
include both internal and external conditions of the individual
(Jacobson & Greenley, 2001).
Internal conditions consist of hope, healing, empowerment, and
connection. Hope is particularly important since the authors
point out it “is an optimistic, strength-based belief that
emphasizes the ability of individuals to determine their own life
course” (Jacobson & Greenley, 2001 in Green-Hennessy &
Hennessy, 2006, p. 92). It is seen by many to be the most
critical aspect of recovery.
The external human rights they cite are “a positive cultural of
healing, and recovery oriented services” (p. 483). They
conclude that there is a reciprocal relationship between the two
and give this explanation.
For example, reducing social stigma will help reduce the
internalized stigma that restricts the ability of some consumers

5. to define a self apart from their diagnosis. Access to
appropriate
mental health services, including education, will provide
consumers with the knowledge, skills, and strategies
that can help them relieve symptoms and control the effects of
stress. Collaborative relationships between providers
and consumers will empower both parties, allowing meaningful
power sharing and a more mutual assumption of responsibility.
Peer support provides opportunities for bearing witness, a
practice that allows the speaker and the listeners to establish
new connections and validates the idea that recovery is possible
(p. 485).
Another definition of recovery from the “National Consensus
Statement on Mental Health Recovery” (SAMHSA, 2005)
defines the concept as “a journey of healing and transformation
enabling a person with a mental health problem to live a
meaningful life in a community of his or her choice while
striving to achieve his or her full potential.” Further, Onken et
al. (2007) reviewed the literature on recovery and defined its
ten fundamental components as the following: self-direction,
individualization and person-centeredness, empowerment,
holism, non-linearity, strengths-based, peer support, respect,
responsibility, and hope.
Aligned with recovery is the concept of wellness. The concept
of wellness moves consumers beyond survival and is related to
how meaningful our lives are.
Wellness

6. In recent years, there has been an emphasis on wellness for
consumers with mental illness. Recovery and wellness go hand
in hand.
Wellness supports the notion of maintaining good mental and
physical health. The concept suggests that individuals have
purpose, are actively involved in work and play, take pleasure
in relationships with others, maintain their health and living
situations, and have some measure of happiness (Dunn, 1977).
Swarbrick (2006) identified the dimensions that define wellness
for persons with mental illness. These eight dimensions are
emotional, financial, social, spiritual, occupational, physical,
intellectual, and environmental. They are pictured and
explained in the diagram below:
Figure 2 The Eight Elements of Wellness
[SAMHSA, Adapted from Swarbrick, M. (2006). A wellness
approach. Psychiatric Rehabilitation Journal, 29(4), 3311-3314].
Given this brief historical context, then, persons involved in
consumer/survivor movement have developed ways to support
consumers of mental health services in their quest for recovery
and wellness. Among two successful types of these strategies
are self-help groups and peer specialists.
Self-help Groups (Consumer Operated Services)
One of the more important elements of the consumer/survivor
movement is the self-help group or consumer operated services.
Self-help groups give people a chance not only to connect with
others, but also to provide them an opportunity to help others.
In other words, they not only receive support for their
individual journey, but give help to those in similar
circumstances.
Studies have shown that self-help groups can help with

7. psychosocial regulation (Roberts et al., 1999) which increases a
sense of empowerment in persons with mental illness (Segal &
Silverman, 2002). Campbell (2011), in her landmark study on
consumer-operated service programs (COSPs), found that these
programs promote well-being for the individual. They also “. . .
significantly improve hope, empowerment, meaning in life, goal
attainment, and self-efficacy” for consumers who avail
themselves of these programs’ services (p.1). Recently, through
the work of Campbell and others, self-help groups have been
designated as an evidence-based practice. Self-help groups can
be found in many communities through the United States.
Peer Specialists
Another program designed specifically for consumers trains
them to become Peer Specialists. Peer specialists are
consumers of mental health services trained to assist other
consumers in their quest toward recovery and wellness. Among
the many duties that a peer specialist may have are to help
consumers develop and maintain their own network, to serve as
role models, to help others make independent choices, and to
support them in taking an active role in their treatment.
As part of its Mental Health Transformation State Incentive
Grant several years ago, Missouri implemented a program for
training Peer Specialists. The program the Missouri Department
of Mental Health implemented is widely known and used
throughout the United States. It was designed by Larry Fricks
of the Appalachian Consulting Group and formerly Director of
Consumer Relations and Recovery of the State of Georgia’s
Division of Mental Health.
Consumers who take the training must complete an intensive
five (5) day training and pass a test for certification. As with
many professional certifications, they must maintain their
credentials through continuing education each year. Once
certified, they can be employed in a variety of settings. These

8. include mental health programs at community mental health
centers, Veterans Administration (VA) hospitals, and other
organizations/agencies that serve persons with mental illness.
The VA is making a concerted effort to use Peer Specialists and
they are helping veterans with mental health problems. You can
find more about opportunities for peer specialists in the VA at:
http://mycareeratva.va.gov/careers/career/010203
The recently formed national organization for peer specialists
has become international. Called the International Association
for Peer Supporters, this organization has finalized U.S.
National Practice Guidelines and sets the standards for peer
specialists. This greatly adds to the credibility of peer
specialists as a practice. You can find information about it at:
http://inaops.org/.
Conclusion
The important point to be made here is that recovery and
wellness, for those with mental illness is not only possible, but
also can be achieved. Many consumers are taking more control
of their illness and their lives and, in turn, increasing their
sense of empowerment, hope, and well-being. They are finding
adequate housing options, taking advantage of educational
opportunities, finding meaningful work, and supporting others
in their individual journeys. Despite the difficulties that
occurred as a result of deinstitutionalization and the obstacles
that remain in obtaining adequate treatment in the community,
individuals are finding ways to provide themselves fulfilling
lives. This is a very positive outcome for persons with serious
mental illness.
More relevant information
Larry Fricks, founder of a Peer Specialist curriculum (currently
used in Missouri among other states), appears in a video from
the Depression and Bi-polar Support Alliance. The interview
gives a history about the development of peer specialists and
tells about the program. You can find it at:

9. https://vimeo.com/142924751
There is currently new federal legislation being proposed to
address a number of issues related to mental health. The bill,
H.R. 2646, entitled Helping Families in Mental Health Crisis,
was introduced by Representative Timothy F. Murphy of
Pennsylvania
(http://murphy.house.gov/helpingfamiliesinmentalhealthcrisisact
). The bill has broad support among a number of organizations
associated with mental health such as the American Psychology
Association and NAMI. It also has considerable support in
Congress for passage.
There is concern, however, among some consumers and others
about the bill. To learn more about these concerns see the
following article written by a consumer:
http://www.madinamerica.com/2015/11/treatment-survivors-
speak-out-against-the-murphy-bill-h-r-2646/.
Please note: We have included the video “People Say I’m
Crazy” for this lesson. Since it was created in 1986, it is
somewhat dated in appearance. It was, however, based on a
ground breaking survey conducted by a long-time colleague of
ours, Dr. Jean Campbell. Dr. Campbell was a faculty member at
the Missouri Institute of Mental Health until her retirement.
She has won many awards for her work and continues to be
considered a pioneer in consumer studies and the consumer
movement. We worked with Dr. Campbell on several projects
including an evaluation of the Peer Specialist program in
Missouri.
Assignment and Group Discussion
Your response to the question below and your participation in
the group discussion will be worth 10 points
1. Based on the film and the readings for this week, what are
your thoughts about the recovery of persons with serious mental
illness? How effective you believe they can be in serving as
supports to others through self-help groups or as peer
specialists?

10. Again, please try to have your initial answers to the question on
the Discussion Board by Friday so that you can respond to
others in the class by Sunday night.
References
Anthony, W.A. (1993). Recovery from mental illness: The
guiding vision of the mental health service system in the
1990os. Psychosocial Rehabilitation Journal, 16(4), 11-23.
Campbell, J. (2011). Lessons on how consumer-operated
service programs help adults with serious behavioral health
disorders: Findings from a national study (1998-2008).
Unpublished Brief.
Green-Hennessy, S., & Hennessy, K.D. (2004). The recovery
movement: Consumers, families, and the mental health system.
In
Jacobson, N., & Greenley, D. (2001). What is recovery? A
conceptual model and explication. Psychiatric Services, 52(4),
482-485.
Onken, S., Craig, C., Ridgway, P., Ralph, R., and Cook, J.
(2007). An analysis of the definitions and elements of recovery:
A review of the literature. Psychiatric Rehabilitation Journal,
31(1), 9-22.
Packard, E.P.W. (1873). Modern Persecution, or Insane
Asylums Unveiled. Hartford: Case, Lockwood & Brainard,
Printers and Binders.
Roberts, L.J., Salem, D., Rappaport, J., Toro, P.A., Luke, D.A.,
& Seidman, E. (1999). Giving and receiving help:
Interpersonal transactions in mutual-help meetings and
psychosocial adjustment of members. American Journal of
Community Psychology, 27(6), 841-868.
Seggal, S.P., & Silverman, C. (2002). Determinants of client
outcomes in self-help agencies. Psychiatric Services, 53(3),
304-309.

11. Swarbrick, M. (2006). A wellness approach. Psychiatric
Rehabilitation Journal, 29(4), 311-314.
Swarbrick, M., & Brice, G.H. (2006). Sharing the message of
hope, wellness, & recovery with consumers psychiatric
hospitals. American Journal of Rehabilitation, 9(2), 101-109.
Tomes, N. (2006). The patient as a policy factor: A historical
case study of the consumer/survivor movement in mental health.
Health Affairs, 25(3), 720-729.