The Downside of the Family-Organized
Mental Illness Advocacy Movement
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, email@example.com). 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
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
764 PSYCHIATRIC SERVICES ♦ June 1998 Vol. 49 No. 6
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
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