conclusion of the decade-long epidemiological Global Burden of Disease
Project is that
five of the top ten disease "burdens" the world will face by 2020
will be related to mental disabilities. Therefore, developing social policy and
community responses to the ways that people with mental disabilities are
treated is becoming an important focus for community practitioners, political
activists, and legislators. The author explores some
of the dynamics of our culture's approach to dealing with difference,
especially when manifested in disenfranchized individuals. He discusses a
community development project created by a New York City advocacy and social
policy organization following the 1999 murder of a woman by an individual whose
mental health disability was never treated. Parallels are drawn between the
civil rights and community mental health movements, which created a precedent
for the 1990 Americans with Disabilities Act. Also examined are the ways in
which community mental health systems manifest social policy that alternately
resists, repeats, and colludes with power operations. The unexamined
assumptions that drive this dynamic are examined as ableism or disability oppression.
Over the last century, the pace of
urbanization and industrialization in the West has outstripped the development
of certain life-sustaining infrastructures that support urban residents. We in
the United States are now witnessing a backlash wherein deindustrialization,
corporate downsizing, unemployment, and the dismantling of the welfare state
are adding to the already considerable pressure on our support structures
[1,2], and, in turn, on the legislation and social policies that address these
structures [3, 4, 5]. Epidemiological studies are showing that exponential
growth in urbanization and industrialization and their decompensatory effects
are resulting in increasing numbers of physical and mental health impairments
. Researchers working on the Global Burden of Disease Project (GBD) have
used a measure they call disease burden to project future causes of deaths and impairments
[7, 8]. They believe that by 2020, the leading causes will be heart disease,
depression, and traffic accidents (Murray and Lopez, 1996, 2004). Furthermore,
they predict, along with other researchers [9, 10, 11], that five of the top
ten leading causes of "disease burden" by 2020 will be "psychiatric
conditions." If that is accurate, it is imperative that we evaluate our
service provision infrastructure for these conditions, the social policies that
support it, and the cultural and political implications of such services. These
implications include oppression and social injustice in the institutions we
create to address our growing burden of psychiatric disease.
I spent four years on the executive board of a
community health center in New York City, observing and participating in an
effort to develop an effective philosophy and infrastructure for current
conditions in the city. In particular, we focused on the changes in social
policy that would be necessary to address the needs of our patient population.
Over the same period I also worked with a community development project managed
by the Coalition of Voluntary Mental Health Agencies, a social policy and
advocacy organization representing over 100 nonprofit community mental health
agencies in New York City. These experiences illuminated important intersections
and parallels between the civil rights and community mental health movements,
and demonstrated clearly how the two earlier movements created precedents for
the Americans with Disabilities Act (ADA).
I will explore how the philosophies underlying
these movements both have and have not been enacted in contemporary social
policy in the U.S., and how their backgrounds offer insight into the history,
development, and policies of New York's current community mental health system.
Specifically, I will examine a) how this system and its social policies are
bound by their own history, operational methods, and current problems; and b)
how the social policy of the system alternately resists, repeats, and colludes
with power operations — that is, how policies often cause the system to
act against its ostensible goal. The unexamined assumptions that drive this
dynamic have been called ableism or disability oppression ; these terms
refer to institutional discrimination that excludes individuals with physical
and mental disabilities from full participation in society.
The primary task of the community mental
health system, in general, is to take responsibility for the health and
well-being of people deemed incapable of taking care of themselves; included in
this responsibility is the behavior of such individuals in their communities. I
will describe a major breakdown that occurred in the New York City community
mental health system in 1999, and the policy changes that were enacted in
Of course, the primary task I have sketched
above is by definition problematic, since it entails a dynamic that supports
disempowerment and chronic dependency in the individuals who use it. It also
supports the maintenance of power and control over people who rely on their
mentally ill or disabled status to insure that their physical and mental health
needs are addressed and paid for. From this perspective, the concept of
impairment is kept separate from expressions of injustice resulting from
social, economic, and political arrangements . This is a particularly
harmful situation in light of the many impairment etiologies that have been
"manufactured" and sustained by such arrangements [4, 14, 15].
Civil Rights, Oppression, and the Americans With Disabilities Act (ADA)
In the 1960s, the American civil
rights movement finally succeeded in getting the U.S. Congress to pass
legislation banning discrimination based on sex, race, and national origin. The
original laws did not include protection against discrimination based on
physical and/or mental disabilities. However, people with disabilities quickly
realized that their positions and needs mirrored the racial-, ethnic-, and
gender-based exclusions and discrimination that were now receiving legal
In 1971, disability advocates
convinced several Congressional lawmakers to introduce an amendment to Title VI
of the Civil Rights Act of 1964 that would prohibit discrimination based on
physical or mental disabilities; this bill died in committee, as did a 1972
bill addressing employment discrimination for people with disabilities. Both
failures reflected the lack of concern of most lawmakers, and many Americans,
for the civil rights of persons with disabilities . These individuals were
not considered a "class" worthy of protection until the
Rehabilitation Act of 1973 was passed and signed into law. That law opened
encouraged disabled populations to see themselves as oppressed minorities with
agendas to present to the American people — a new kind of thinking. The
grassroots movement that grew from this initial spark lobbied for the Americans
With Disabilities Act (ADA), which was passed in 1990. The ADA gave substantial
recognition to the difficulties of individuals with disabilities who must
navigate their way through a society tailored to the needs of able-bodied
According to the ADA, a disability is interpreted as a)
any physical or mental impairment that substantially limits one or more of an
individual's major life activities, b) a record of such an impairment, or c)
someone regarded as having such an impairment . This definition
individualizes the experience of disability, on the grounds that generalized
responses and acts of assistance may not be adequate to provide opportunities
for the larger disabled population. That stance — commonly referred to as
disability oppression theory — advocates responses based on individual needs. In
contrast, ableistic ideologies advocate "fixing" or "correcting"
disabled individuals so that they match standard system designs. Casteneda and Peters have noted that "disability
oppression theory insists on the culpability of society's inhibiting
structures, which overvalue economic productivity, undervalue alternative
social contributions, and attach positive and negative associations to relative
forms of independence and dependence" [12, p. 320].
All laws providing educational and
rehabilitation services and prohibiting discrimination in education,
employment, and access to public programs stress similarities in needs and
problems within an array of physical, psychological, and intellectual
impairments. Laws are unlikely to acknowledge differences among disabling
conditions and their varied impacts on people's lives. Most importantly, social
policy and the programs designed to serve the multifaceted "groups"
we call "disabled" are based on an assumption that invites challenge:
that any disability is the primary variable that predicts the outcome of social
interaction and program success. In fact, it is social context that generally
shapes the meaning of a person's disability.
This means that social policy and related
interventions would often do better to target the disabling environment instead of the
individual disabilities . To the extent that Americans resist laws
supporting the civil rights of people with disabilities, we could argue that
our entire society is a disabling environment; however, it may be more fruitful
to address these issues on a smaller scale — in the context of the system
designed to serve people with mental disabilities.
Point of Impact
The current policy of
deinstitutionalizing mentally ill individuals in the U.S. was 50 years in the
making. The combined population of residents in state and county mental
hospitals in this country has dropped from more than 500,000 in 1950 to
approximately 50,000 in more current times [19, 20]. However, the total
population of mentally disabled prison inmates has increased to the point that
a person with a serious mental illness is almost five times as likely to be
incarcerated than admitted to a psychiatric care facility. And a similar pattern seems to
underscore the Crime and Disorder Act (1998) in the UK [21, 22].
This juxtaposition of declining
treatment and increasing incarceration rates has attracted considerable
attention from deinstitutionalization critics, who note that most governments
have consistently failed to establish promised community-based treatment
programs . However, there are signs that the tide is turning. Backed by research
asserting that treatment can reduce violence in people with major psychiatric
disorders, and by high-profile cases of violent crimes committed by people
suffering from severe mental illness, community-based treatment approaches are
slowly gaining attention in this drama [24, 25]. The issue remains
controversial, since it pits public safety concerns against individual rights.
Occasionally some specific incident becomes a
symbol/symptom of chronic malfunction in a system; I call such occurrences points
of impact [26, 27, 28, 29, 30]. A point of impact is an acute symptom that
makes manifest a more chronic community crisis. Civil unrest is an example
— that is, the
civil unrest is the force, and the crisis to which it is applied is the point of impact. A point of impact — or the collision that it
indicates — occurred in New York in 1999 that brought into public
awareness the chronic state of crisis in the city's community mental health
system; in hindsight, we can view the event as support for the GBD project's
In January of that year, a
30-year-old man with schizophrenia named Andrew Goldstein pushed 32-year-old
Kendra Webdale in front of a Manhattan subway train moving at full speed.
Goldstein was subsequently convicted of second-degree murder. The murder
incited public outrage that was translated into "Kendra's Law"
— a requirement for forced treatment (sometimes called "assisted
outpatient treatment") for people with severe mentally illness. Prior to
the killing, Mr. Goldstein had made repeated requests for treatment, but had
been denied each time. Yet the State of New York, which described Mr. Goldstein
as mentally ill when Kendra's Law was being written and debated, argued in
court that he was sane when he pushed Ms. Webdale in front of the train. A
final irony is that Mr. Goldstein — as a convicted murderer — is
only now receiving the treatment that he had previously been refused. It is a
decade later, and the policies and approached to treatment seems to merely
repeat this pattern — even more so now with the closing and impending
closing of major inner-city hospitals like Cabrini — ad infinitum. What are the
dynamics of a culture that implements such policies as the ones
institutionalized in Kendra's Law?
Liberal Individualism and a Culture of Ruthless Discrimination
Western societies in general seem to be breeding pools for
the development and proliferation of remedies — social, personal, and
cultural — for just about anything that might cause discomfort. These
remedies notably target pain and anxiety, and also their derivatives:
irritation, frustration, sadness, anger, and so on. Paradoxically, however,
they also serve to marginalize individuals in categories (such as
"mentally disabled") who cause such feelings to arise within members
of the majority group. A further paradox is that while palliative remedies such as these reduce
pain and suffering, they destroy the opportunity to study and treat
definitively, and eventually recover from, the problems that underlie the
unpleasant symptoms . Palliative remedies help individual members of
society to dissociate our awareness of the suffering of others around us
— they encourage, that is, a kind of ruthlessness that eventuates in
discrimination against various minority groups and their members. On this
subject I have previously written that
Human — that is, emotional
— responses to everyday stimuli are increasingly pathologized, and we are
increasingly promised the obliteration of all personal suffering. Yet at the
core of all these human responses to suffering that need remedy is a deep sense of empathy
with the struggles of existing at this time in this society, in a state of
perpetual dread over the immense social problems that infect those around us,
and that seem (and often are) insurmountable [28, p.215, emphasis in original).
Certain kinds of empathy are feared, defended against, and
abstained from in this society, as if compassion — the ability to
experience the pain and problematic circumstance of another person — were
a contagion that if experienced in full force would lead to breakdown. One of
these is empathy for those whom we view (and scapegoat) as carriers of manifest
social pathology. Legislation like "Kendra's Law" encourages us to
dissociate the suffering of such people, and impose constraints upon them
The general American movement toward liberal
described in the sociological analyses of Bellah, Madsen, Sullivan, Swindler,
and Tipton  supports the Kendra's Law mentality. Bellah and colleagues
asserted that the definitive aim of life in a liberal individualistic society
is to promote fulfillment (increased satisfaction and decreased discomfort) for
individuals, rather than groups or communities. By individualizing fulfillment
and satisfaction, people in such cultures are perfectly set up to ignore
— and are supported in the practice of ignoring, or dissociating —
the suffering of others. That is, enacting a ruthless discrimination as a
status quo approach to living, making massive categorical biases seem necessary. The underside of the argument
presented by Bellah — and others, such as Amitai Etzioni  — is
that such arguments pose a kind of "new communitarianism" that
as prior to individual rights and a call for a return to traditional social
institutions such as religion and the family [33, 34]. The new communitarians
largely uphold the liberal Western tradition, criticizing deviations or threats
to this tradition . Yet in this process they wind up repeating the elitist
underpinning of the very system that they criticize, and becoming the watchdogs
of their own version of the "good life." The pervasiveness of the
liberal individualism perspective has been analyzed in many of the social and
cultural institutions in capitalist societies, particularly the United States;
the mental health machinery of this country has attracted special interest [36,
37]. In fact, Some authors have specified a sense that the ways in which the
major critiques of liberal individualism themselves have been framed supports a
kind of "America as Empire" philosophy [38, 39, 40] that overlooks
crucial issues related to race, class, and gender bias (1, 41, 42, 43] —
as well as ableism.
When (individual, group, or community) awareness of pain
and suffering is reduced through the use of sanctioned group-level
discrimination, what remains is a form of chronic crisis so muffled that even
those in the middle of it may not perceive it. This process not only supports a
"victim-blaming ideology" . It also establishes a framework for
defining social problems in terms of social conditions (e.g., poverty, racism,
poor healthcare) and the groups that allegedly engender them [47, 48]. The dynamics of ruthlessness
concretize the split between the subjectified self and the objectified (or
"inanimate") other [13, 49, 50]. I will now discuss an ongoing social
justice project that has attempted to address some of the underlying problems
associated with these dynamics.
Community Response and the Development of a Responsive Social Policy
The Coalition of Voluntary Mental
Health Agencies (the Coalition) considers that its primary task is to ensure
that New York's community mental health care system provides adequate care for
the people it is meant to serve. The Coalition's member agencies serve more
than 250,000 clients in almost all the communities and neighborhoods of our
country's most diverse city.
The Coalition is a child of deinstitutionalization. New
York State began its deinstitutionalization program in part because advocates
and policy makers recognized that people with mental illness deserved better
than to languish in huge, impersonal hospitals. Deinstitutionalization implied
not only fiscal savings, but also a promise — still unfulfilled —
that clients discharged from psychiatric hospitals would be receive adequate
care upon their return to their communities. The Coalition was born to address
the failure of communities to provide that care.
Toward the end of January 1999, the Coalition held a
meeting to address the issues raised by the Webdale/Goldstein tragedy. Its
spokesperson and executive director, Phillip Saperia, claimed that:
For Andrew Goldstein, it seems we
traded a huge state hospital for an 8 X 10 basement room along with alternating
hospital readmission and outpatient clinic treatment. Andrew is not blameless
in this tragedy, but neither is the State of New York. This was not, as some
have suggested, an act so random as to be unavoidable. While we cannot prevent
every tragedy, we know how to guard against catastrophes like this one. We know
that integrated, assertive, coordinated community-based treatment works. We
know that discharging someone from a hospital without a discharge plan to a
lonely basement apartment with little professional support, onsite services or
crisis intervention does not work. [51, p. 3].
The Webdale/Goldstein tragedy is
but one of the cases the Coalition has used to shed light on critical issues
affecting adequate treatment, service delivery, and policy for people with
mental disabilities. The Coalition serves as a vocal advocate for adequate care
and the realistic resources — especially legislative — required to
provide it. Funding is a major community mental health service issue in New
York State, as it is throughout the country; this is the issue that the
Coalition addresses most consistently. Currently the Coalition is confronting
cuts in Medicaid and Medicare funding, the movement toward managed care, and
the ways that these trends keep the people in their population from enacting
their own treatment programs.
The Coalition is struggling to
become a more responsive and collaborative organization, willing to engage in
necessary self-confrontation and self-critique. Collaboration among its own
members and with members of the client population has raised the possibility
that the central task of the community mental health system is inherently
problematic. That is, to take uncritical responsibility for the health and well-being of
people deemed incapable of taking care of themselves sets up endless
opportunities for oppressive, colonizing, disempowering, and iatrogenic
treatment patterns and legislation. The Coalition recognizes that the voices,
experiences, and insights of those being served must be included when service
delivery programs are being developed [52, 53]. Since the most successful
action plans are developed collaboratively with the clients being served ,
the Coalition is now calling its clients "consumers" — an
indication of empowerment and entitlement to make choices about what
constitutes adequate care.
This right is clearly challenged
by Kendra's Law. Over the last few years Coalition members have been working
with local and state officials (as well as with clients) to develop more
appropriate intervention and policy responses to such system failures as the
Webdale/Goldstein tragedy. Its goal has been to account for the safety and
security needs of both clients and communities, while preserving the right of
people with mental health disabilities to be treated in humane ways.
Assertive Community Response
Deinstitutionalization began with
the closure of many long-term state and private hospitals. It coincided with
the introduction of new pharmacological treatments. Since the 1950s, when the
process began, there has been ongoing concern about providing care for the most
seriously ill patients. In many cases, the multifaceted and complex
psychosocial needs of the mentally ill living in local communities were not
adequately addressed. Efforts at rehabilitation were at best partially
effective, if at all. This policy failure has been attributed to such factors
as underfunding, new challenges (e.g., rampant substance abuse), and high rates
of noncompliance with medication regimens and treatment programs [54, 55, 56].
The Assertive Community Treatment model was created
in the 1970's by a Wisconsin mental health team to address policy and
implementation issues in a proactive and comprehensive manner . And there has
been an ongoing attempt at creating a responsive community mental health policy
and delivery system is New York State's Assertive Community Treatment (ACT)
program, started in
2003 as a belated response to the Webdale/Goldstein tragedy, and born out of
collaboration among various community mental health agencies and clients.
Observers have noted that there were numerous pleas from the Coalition to start
an ACT program well before the murder. Yet it is only recently that ACT has
been regularly used as a middle ground between policies of either forced or no
treatment for patients experiencing more acute manifestations of mental
disability [51, 57, 58]. Offshoot projects such as the Collaborative Mental
Health Initiative have also been created to implement policy and programs that
acknowledge and respond to the experiences and needs of the mentally disabled.
To help clients achieve meaningful
goals, ACT has accepted a consumer-centered approach to its policies and
efforts, very much in contrast to programs based on institutional structures
(e.g., homeless shelters, detoxification centers). Goals are expressed in terms
of vocational achievement, adequate housing, and interpersonal relationships.
Central ACT criteria include:
of targeted services to the severely mentally ill;
of direct services through treatment teams rather than outside clinicians;
small staff-to-client ratio (1:10 or less);
team responsibilities so that clients receive attention from multiple staff
treatment and support;
and flexible services;
of most treatments and services outside of clinical settings;
time limit on services;
delivery 24 hours / 7 days per week; and
10.focus on patients' individual strengths and needs.
Based on innovative
and responsive developments in the realm of social policy, ACT teams deliver
flexible treatment, rehabilitation, case management, and support services to
individuals with mental illness whose needs have not been adequately met by
traditional service delivery approaches (According to Herinckx et al. , the results of
approximately 25 controlled trials have demonstrated the clinical- and
cost-effectiveness of the ACT program). Although evidence-based practices are
helpful in terms of program quality, their uniform standards frequently
overlook local needs and variations. Thus, too much fidelity to structure can
diminish the creativity that ACT requires to evolve in order to maintain its
Ongoing Development of Social Policy and Community Treatment
The fight for civil rights is an
ongoing struggle on the part of any groups oppressed by institutions and
ideologies that ignore unique histories, cultural formations, individual and
family identities, and the needs of those groups to be adequately represented
within a daily societal context. Since the beginning of the civil rights
movement, middle-class values clearly legitimate and regulate the cultural
hierarchies that demean marginalized groups and reinforce racial, economic, and
ableistic inequalities — often reflected in the very legislation that
targets their struggles. Since the civil rights movement began, middle-class
values have been at the top of the cultural hierarchy that dictates and
validates the legislation that targets marginalized groups, so that demeaning
racial, economic, and ableistic inequalities may be reinforced by the same
legislation that purports to remedy them. In the struggle for equality, the
institutional forms of domination that affect the lives of the disabled cannot
be separated from the cultural ones. It should come as no surprise to anyone
familiar with the history of the civil rights movement that the same dynamics
that all historically oppressed groups play out continue within the policies
and interventions aimed at individuals with mental and physical disabilities.
Treating mentally ill people
without their consent is currently the most contested human rights issue in
mental health law and policy. Although 40 jurisdictions in the U.S. have statutes nominally
authorizing outpatient commitment (in other words, legal orders to adhere to
prescribed community treatment), until recently only a few states have
vigorously promoted and enforced such laws [23, 55]. National interest
in outpatient commitment soared with Kendra's Law and the 2003 enactment of
"Laura's Law" in California — also named after a young woman
killed by a mentally ill person who had not received treatment. Many states are
now involved in an emotionally charged, take-no-prisoners battle between
advocates of "assisted treatment" (the term preferred by proponents
of outpatient commitment) and advocates of "leash laws" (a less
Almost every American community
has a subpopulation of mentally ill individuals who interact with public
agencies and institutions — public housing authorities, social welfare
agencies, community mental health centers, public hospitals, substance abuse
programs, the police departments, the courts, and the prisons. The increasing
number of these people -- often labeled "revolving-door patients"
— has been attributed variously to more restrictive criteria for
involuntary commitment, the limited availability of effective in-patient care,
a paucity of effective community-based services, and a lack of community
support programs [8, 60, 61], as swell as, more recently, the impact of trauma
for veterans of the war in Iraq . This population would benefit from
responsive legislation that is built on and sustained in part by input from its
There has always been a fine line
between assertive help-giving practices and oppressive tendencies in this
country's mental health delivery system — especially in large urban
centers such as New York City. The effort to create responsive social policies
to address the community mental health system that simultaneously contain the
potential for violence and disorder and that addresses effectively the
burdensome needs of the mentally disabled is a narrative of one hand giving and
the other taking away. That is, mid-19th century incarceration
followed by early-20th century institutionalization followed by
late-20th century deinstitutionalization, mandated recapture (e.g.,
Kendra's Law), and currently a collaborative approach that includes the voices
of "consumers" in such programs as ACT.
The central point of this
narrative is an area often overlooked by social justice and cultural theorists,
even those who effectively address issues of oppression and discrimination
along race, class, and gender lines. When ableism drives
interventions for "social justice" — especially for people
oppressed and discriminated against for mental disabilities — the
contradictions it brings with it are seldom noticed. With a few notable
exceptions (e.g., 63, 64, 65], the invisibility of the conflict means that
social justice discourse (and the social policies it stimulates) do not
consider how race, class, gender, and sexual orientation issues are also part
of the disabled population equation. That oversight then reinforces oppressive
and discriminatory practices against the disabled in the very social
institutions and policies meant to serve them.
As long as we live in a culture that develops and
implements repressive social policies, we are all culpable for the oppressive
behaviors that such policies support. Don DeLillo speaks to this point in his
novel The Names,
when he writes that "Those who engaged knowingly were less guilty than the
people who carried out their designs. The unwitting would be left to ponder the
consequences, to work out the precise distinctions involved, the edges of
culpability and regret" [66, p. 317]. Our attempts to redress discrimination
are shaped by the very philosophies that cause the discrimination in the first
place — the philosophies that exist both to embody and contain our
anxieties about frightening social problems, and to unburden us from those
Researchers in the Global Burden of Disease Project
have predicted that by 2020 five of the top ten "disease burdens" the world will be
addressing will be related to mental disabilities [8, 67]. Even an
organization like GBD this is an unfortunate lumping together of mental
disability categories; it reduces them to a societal burden as the ableistic
and other discriminatory practices do, and perpetuates the use of disabled
people as scapegoats for societal malfunctions. Reductionistic approaches to people with mental
illness — approaches that ignore the facts of complex circumstances,
multiple identities, various etiologies, and personal struggles — make
them easy targets for fearful projections (e.g., breakdowns, violence,
instability) within the general population. In its worst form, this process
represents a "victim-blaming ideology"  that casts doubts on the
legitimate rights of oppressed groups and supports cutbacks in or the
elimination of institutions meant to provide services for them.
Henry Giroux argues that
"Domination is never total in its effects; contradictions arise within all
public spaces, even those that appear most oppressive" [42, p. 69]. It
seems as though the further we move from social investment, the closer we come
to policies of social domination or containment, in which state services are
reduced to the repressive functions of discipline, control, and surveillance
[6, 45, 68, 69, 70, 71, 72]. One important focus for challenging the effects of
this kind of domination is the creation of responsive communities and
policies that can address the unique circumstances of individuals in need of
mental health services.
The ACT program and offshoot
projects such as the Collaborative Mental Health Initiative exemplify how it is
possible to address the needs of groups too frequently overlooked in social
justice discourses. When we look beyond the language of individual pathology to
the more threatening issue of how we treat marginalized populations, we expose
frighteningly the degree to which many people in this society still lack the
security and resources they need for safety, empowerment, and well-being.
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