The Downside of the Family-Organized Mental Illness Advocacy Movement

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					Personal Accounts

The Downside of the Family-Organized
Mental Illness Advocacy Movement
Sylvia Caras

G       roomed, mature, confident, the
        family advocate articulated from
the podium, carefully and with                     Editor’s Note: This month’s
                                                                                          more conferences. Now I have seen
                                                                                          how families’ relief at finding exoner-
                                                                                          ation has become an ambition to med-
strength: “The horror of mental illness            column is in two parts: a per-         icate social disarray. I’ve felt their
. . . .”                                           sonal account and commen-              shunning since I started publicly to re-
    “Horror.”                                      tary from Sylvia Caras, a dis-         formulate what I thought about my
    I felt as if a laser were searing me,          ability rights advocate who            own 1987 experiences with the mental
shattering my sense of myself as a                 finds that the family-orga-            health system.
member of a caring family.                         nized mental illness advocacy             The family advocacy I watch seems
    “Horror.”                                      movement can be stigmatiz-             to focus on the family’s misery, the
    What I heard was “the horror of                ing and patronizing, and a re-         family’s despair, the family’s efforts and
your illness”—“horror . . . you.”                  sponse from William Emmet,             frustrations, the family’s engrossment
    “Horror . . . horror . . . horror.”            a family member and board              with itself. Despite a convincing col-
    The speaker was telling me what                member of the National Al-             lection of serious diagnoses, hospital-
parents felt—“horror”—what my chil-                liance for the Mentally Ill.           izations, and treatments, we who get
dren wouldn’t tell me—“horror”—and                                                        on with our lives and offer ourselves as
what my sister feared.                                                                    examples of recovery are dismissed as
    I felt an intruder. Afraid to speak, I                                                not really ill, as exceptions, as misdiag-
tried to make myself outside as small         watching their hopelessness as they         nosed. Our experience is not valued.
as I felt inside—shamed, vulnerable,          greeted their “tragedy.” I felt so dis-        Instead, the idea of the loved one
unwanted.                                     honored.                                    that is held on to is of someone who is
    I imagined shaking hands with the            That was in the fall of 1993. Until      terribly, terribly sick—without hope.
speaker, that family advocate. I imag-        that time I had been facilitating a local   To me, this perspective is an example
ined her wanting to wipe off the touch        mood and melancholy support group.          of self-absorbed collateral family mem-
of my horror on her skirt.                    I had attended local mental health sys-     bers intent on stilling the patient’s
    We were at the plenary assembly of        tem improvement meetings and even           voice: the primary voice. By suppress-
a federally sponsored annual meeting          a few national conferences. I had met       ing this voice with, if needed, hand-
reporting the results of innovative com-      friends and families who were caring        cuffs, restraints, sedation, or seclusion,
munity mental health programs. I sat          and supportive. But I was new to na-        family advocacy has had a chilling ef-
with 250 other invited guests at the          tional advocacy, and that meeting at        fect on the civil rights of individual
Holiday Inn and listened as, again            the Holiday Inn was my introduction         loved ones. These violent interven-
from the podium, another mother               to the powerful, well-funded mental         tions make me wonder what this loved
brandished “the tragedy of mental ill-        illness lobby of families whose mission     voice might reveal if it were allowed to
ness.” At the word “tragedy,” many in         is to make the family issues central, to    speak.
the audience sighed together in shared        reveal the family pain, to spare the           But the voice is co-opted by family
grief. Even though my own family was          family image.                               advocates who don’t consider the im-
not like this, I pictured visiting my par-       Later I learned how in 1979 families     pact of their patronage on the loved
ents, reaching out for an embrace, and        had organized to protect themselves         ones, discounting the loved ones as un-
                                              from blame, how they had put forward        aware of what they need. Who is well
                                              a biological model of disease, and how      served by this reproduction of stigma-
Ms. Caras, a disability rights advocate, is
coordinator of electronic mailing lists for
                                              they were now lobbying, with the            tizing, patronizing sympathy, these re-
the Madness Group, an Internet service        pharmaceutical and medical indus-           peated images of disturbance? I know
for users or former users of mental health    tries, for research dollars to support      I am wounded by the advocates’ lan-
services. Her address is 146-5 Chrystal       the biohealth approach to managing          guage.
Terrace, Santa Cruz, California 95060 (e-     behavior.                                      What I want from those who love
mail, The column            Now, in 1998, I’ve served on boards      me is not sympathy. I want my family
editor is Jeffrey L. Geller, M.D., M.P.H.     and led more groups and gone to             members to welcome me, as me, just
PSYCHIATRIC SERVICES   ♦ June 1998 Vol. 49 No. 6                                                                                763
for being me. And I want to hear the         ing fear and polarities, displaying no        potential, and to stop sensationalizing
language of respect.                         tolerance for ambiguity, no flexibility,      the family’s despair. I don’t want to up-
   To paraphrase Weick (1), words ex-        accentuating the nonnegotiable au-            lift you with my pain. If you can’t love
press and interpret; words include and       thority of the medical and psychiatric        me as me, or accept me, or respect me,
exclude; words matter. Verbal cate-          professions. In any social setting, rules     at least create a life for yourself sepa-
gories mold thinking; verbal categories      must be learned; then rules must be           rate from me. Today’s family-orga-
can contribute to integration or to dis-     tested and questioned and retested to         nized advocacy stigmatizes your loved
crimination. Family advocates shape          be sure they are still applicable; that is    one—me, you, all of us.
and use words and ideas in ways that         the way of maturing.                             Instead of seeing disease, listen.
seem to me to change the meanings so            Some families understand the many             Instead of discussing medication
much that for the sake of clarity, dif-      parts and obligations of parenting.           and noncompliance as an inability to
ferent words should be used.                 Some family members seem to be                understand one’s condition, listen to
   Family advocates regularly breach         grieving for who their loved ones were        your loved one’s objections.
privacy by telling their children’s sto-     at some earlier time while objecting to          Instead of thinking how you gain
ries. These stories are not family prop-     who those loved ones actually are now.        when your loved one takes medication,
erty. They belong to the primary pa-         Perhaps the hardest, arguably the             think of what your loved one loses.
tient, not to the family. But family ad-     most important, part of parenting is to          Instead of forcing your loved one
vocates tell of their loved one’s labels     trust the child enough to let go. Even        into unwanted treatment, attend to
and behaviors.                               children with disabilities deserve the        what is wrong with treatment services,
   So urgent are the wishes of active        chance to be let go.                          attend to why services are refused. Lis-
family advocates for personal relief that       Moving counter to social trends of         ten to the experiences.
they use their children’s voices, disallow   diversity, globalization, and openness,          Put the well-being of your loved ones
independence, and sensationalize their       the family advocacy movement frag-            above your wish to fence them off.
children’s antisocial activities. I have     ments, segregates, isolates, imposes             Truly listen, for just a moment.
never heard family advocates assert that     secrecy, shames. I believe today’s men-          Find the worth—the flair, the inge-
they have informed consent to tell           tal health approaches will be remem-          nuity, the ability.
these stories. I have rarely seen parents    bered along with the Salem witchcraft            See that worth, not disease.
beside their own child, testifying to-       trials as a dishonorable scapegoating of         Hear hope, not horror.
gether in advocacy for the same goals.       transformative experiences.                      Listen. ♦
   Not all families are so authoritarian.       As a person with a disability, what I
But authoritarian families curtail           want is acceptance. When you speak of         Reference
growth with coercive interventions           my life as a tragedy, you are robbing         1. Weick KE: Sensemaking in Organizations.
and a flourishing fundamentalism, us-        me of my dignity. I want you to see my           Thousand Oaks, Calif, Sage, 1995, p 132

A Family Advocate’s Reply

Why Consumers and Family
Advocates Must Work Together
William Emmet

O     ne of the things that the 1990s
      will surely be remembered for,
in terms of U.S. mental health policy,
                                             rious brain disorders such as schizo-
                                             phrenia, bipolar disorder, severe de-
                                             pression, and severe anxiety disor-
                                                                                           at recovery and a high quality of life. It
                                                                                           is their voices and stories that are
                                                                                           helping to chisel away at the formida-
is the growing voice of people with se-      ders. Consumers are increasingly              ble edifice of stigma and discrimina-
                                             speaking out, revealing their own sto-        tion that still casts its shadow on U.S.
                                             ries, advocating for change, and as-          and world culture. It is their voices
Mr. Emmet is a family member, former
                                             suming leadership roles in mental             that remind us daily that mental ill-
executive director of the Rhode Island Al-
liance for the Mentally Ill, and a member    health organizations.                         nesses are real and affect real people.
of the board of directors of the National       The growing strength of the con-              The National Alliance for the Men-
Alliance for the Mentally Ill (NAMI). Send   sumer voice is a development to be            tally Ill (NAMI) began 20 years ago as
correspondence to him at NAMI, 200           celebrated. It is the voices of con-          a group of parents seeking services,
North Glebe Road, Suite 1015, Arlington,     sumers that have contributed so               justice, and hope for their adult chil-
Virginia 22203.                              strongly to the push for services aimed       dren with extremely disabling brain
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disorders. In 1998 NAMI is itself be-         also showed that consumers are over-        into account. Schizophrenia and bipo-
ing strengthened by the growing role          or undermedicated; that depression          lar disorder can diminish insight into
of consumers. Consumers increasingly          and side effects are ignored; and that      one’s own illness. Hallucinations, delu-
are joining family members in NAMI’s          rehabilitation, family support, and         sions, and agitation are prominent
mission. More than 20 percent of our          outreach are all but absent                 symptoms of these brain disorders.
membership consists of consumers.                It is also time to stop the broad-       When untreated, these disorders can
Nearly half of the state campaign coor-       brush attacks on families. Although         sometimes lead to disruptive and even
dinators from our Campaign to End             there will always be some family            violent actions. And usually a family
Discrimination are consumers. Four            members and others who are not              member is the victim of such attacks.
of 16 members of our national board           pure in intention or action, most fam-      As a community, families and con-
of directors are consumers. At least 25       ilies do not disrespect a loved one         sumers together must face this sad re-
percent of the staff of NAMI are con-         who has an illness and disability.          ality of mental illness. Even as we pro-
sumers. Indeed NAMI can fairly claim          Quite the opposite is true. The re-         mote recovery, consumer involvement,
to be the largest single consumer or-         search literature has shown time and        and indeed the preeminence of con-
ganization in the country.                    time again that families are the pri-       sumer wishes, it does not do any con-
   A powerful force has been created          mary care providers for most people         sumer a service to deny illness and
by consumer and family voices join-           who suffer from the severest and            treatment. As we well know, such a
ing together. This advance reflects           most disabling mental illnesses. Most       course leaves too many consumers on
the success of pioneering consumers,                                                      the streets, in jails and prisons, or dead.
who had the courage to speak out in                                                          Our continued infighting as a com-
the face of overwhelming stigma and                                                       munity of individuals concerned
discrimination. It also reflects, we be-                    In NAMI                       about those with serious brain disor-
lieve, the significant improvements in                                                    ders hampers the effectiveness of our
treatments that we have witnessed in                  a powerful force                    advocacy. And it plays into the hands
the last decade, which have made sig-                                                     of managed care organizations, fund-
nificant recovery a real possibility for            has been created by                   ing agencies, and providers who
ever more consumers. And it builds                                                        would rather not invest the resources
as well on the success and courage of              consumer and family                    to provide the best, science-based
family members who themselves over-                                                       treatments and services for this popu-
came blame and isolation to put their                   voices joining                    lation. Too many such organizations
imprint on the system.                                                                    shamefully use consumer-survivors as
   Unfortunately, the courage and                           together.                     window dressing for policies that are
success of consumers and their fami-                                                      in their own fiscal interest.
lies are too often subsumed by the po-                                                       There is no question that NAMI’s
larizing misinformation, demagog-                                                         own evolution as a consumer and
uery, and outright cynical manipula-                                                      family organization has not always
tion of some funding agencies, service        families work harder than anyone, ex-       been easy and is far from complete.
providers, and now managed care or-           cept consumers themselves, for the          Although NAMI has a distance yet to
ganizations. The preceding essay em-          consumer’s optimal recovery and             travel in fully integrating the voice of
bodies much of this negativity.               quality of life. Most families are not      consumers into our organization, it is
   NAMI, because of its success, is a         co-opted by the pharmaceutical and          a challenge that we cherish and will
target of much of this animosity. It is       medical industries. Most families do        work hard to meet. We believe that
unclear who gains from the tendency           not patronize, stigmatize, or other-        we have come a significant way along
to demonize, but it is certain that we        wise demean their loved ones. Yet it is     this road. We have a vision of the fu-
all stand to lose much in the time, en-       not inconsistent with that picture to       ture in which consumers and families
ergy, and credibility expended in the         say that a family suffers the pain of a     are no longer divided and conquered,
process. It is time for the mental            loved one’s illness, even as that loved     but are a united voice—as are most
health community—providers, ad-               one makes the journey toward accep-         families—for ending discrimination
ministrators, policymakers, families,         tance and hope for recovery.                against people with brain disorders
and consumers themselves—to end                 The time has long since come to end       and promoting the best recovery for
this destructiveness, and for all of us       the silly fiction, perpetuated in the ac-   every person who develops such an
to aim our efforts at reforming the           companying essay, that illnesses such       illness. Together we shall stand,
persistent and enormous problems              as schizophrenia or bipolar disorder or     stronger than ever before. ♦
that we all face.                             severe depression can be categorized,
   And the problems are enormous.             with equal accuracy, as simply social       Reference
Just recently a large study showed that       disarray. They are real illnesses, and      1. Lehman AF, Steinwachs DM, survey co-in-
more than half the time consumers             access to treatment for them is critical       vestigators: Patterns of usual care for schizo-
with schizophrenia fail to receive core       for consumers’ well-being.                     phrenia: initial results from the schizophre-
                                                                                             nia patient outcomes research team (PORT)
treatments and services that have               We also need to take the harsh reali-        client survey. Schizophrenia Bulletin 24:
been shown to work (1). The study             ty of the most severe mental illnesses         11–19, 1998

PSYCHIATRIC SERVICES   ♦ June 1998 Vol. 49 No. 6                                                                                       765
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