Chapter 20
Ableism
Glen W. White
Many people with
disabilities report their community experience to be disconcerting. Experiences
range from being invisible and unnoted by others to being viewed as the objects
of pity. People with disabilities are often thought to be incapable of
contributing meaningfully to society. If they are invited to participate, they
feel a great burden to continually prove themselves worthy of such involvement.
It is abundantly clear that people with disabilities are marginalized by
society in terms of attitudes (Enwemeka & Adeghe, 1982; Jackson &
Mupedziswa, 1988; Okunda, 1981) employment (O’Day, 1999; Schriner, 2001),
income levels (Kaye & Longmore, 1997), education (National Council on
Disability, 1989), poor assistive technology (Werner, 1987), and access (Kaye,
1998). But perhaps one of the biggest challenges people with disabilities and
chronic conditions face is the concept and barrier of ableism. Simply put,
ableism is a non-factual negative judgment about the attributes and
capabilities of an individual with a disabling condition. While other “isms”
such as sexism, heterosexism, and racism have large existing literatures, there
is a small but growing literature in the area of ableism (Burdekin, 1995; Charlton,
1998; Davis, 1995; Gokhale, 1985). These and many other issues prevent people
with disabilities from fully participating in their communities and society in
general. In order to understand the situation of people with disabilities we
must explore the historical roots of ableism and the contextual issues which
affect attitudes and actions toward this population.
Dating back to Greek and Roman societies the incidence
and prevalence of disability was high, largely because of the strenuous and
manual nature of most daily activities. In addition, disabilities due to
injuries and diseases were common due to poor living conditions and the
frequent occurrence of wars and pestilence (Garland, 1995). The practice of
infanticide for infants born with obvious deformities was required by law in
the city-state of Sparta, and acceptable in other parts of Greece (Stiker,
1997). Interestingly, according to Stiker, those who had congenital
abnormalities such as hearing, visual, and or cognitive impairments that were
not easily detected until later development were not as likely to be put to
death.
Braddock and Parish (2001) provide an excellent
overview of the institutional history of disability throughout the Middle Ages
to modern society. During the Middle Ages the conventional wisdom concerning
many disabilities and impairments (i.e., psychiatric disability, deafness,
epilepsy) suggested that the cause of such maladies were demonological or
supernatural causes; the individual with the impairment was thought to be
possessed. Treatment for these pour
souls ranged from drinking unpleasant tasting concoctions to their execution as
witches. As Braddock and Parish (2001) further note, starting in the mid 1200’s
members of religious orders and laypersons with an interest in mental illness
established residential institutions to house and assist those with disabling
conditions such as mental illness, cognitive impairments, and later, leprosy.
Developments
in Early United States
The founding colonies in the US frequently adopted and
adapted English law for their governance. Early laws in some communities
included public welfare provisions for those who were poor or had infirmities
that prevented them from working (Morton, 1897). In addition to these laws and
policies, new treatments were developed to aid people with selected disabling
conditions. Some of the earliest interventions targeted persons with mental
illness. One signer of the Declaration of Independence, psychiatrist Benjamin
Rush took an active interest in finding treatments to cure mental illness,
including the development of mechanical devices to reduce sensory motor
activity and heart rate pulse levels (Rush, 1812). Other treatment approaches
common in the last quarter of the 1700’s and early 1800’s included prescribed
dietary changes, enemas, bloodletting, and cold showers.
The early 1800’s brought new developments and leaders
who worked to advance the education and welfare of persons who were deaf or
blind. Thomas Gallaudet, an educator, founded the first
deaf school in the US. After his education at Yale, Gallaudet became interested
in deaf education and travelled to
France where he studied sign language and other teaching methods at the
Institut Royal des Sourds-Muets in Paris. In 1816 Gallaudet returned to the
U.S. with Frenchman Laurent Clerc, a teacher of the deaf, and founded the first
free public school for the deaf in the U.S., the American Asylum for Deaf-Mutes
(now the American School for the Deaf in Hartford, Connecticut). Later, Gallaudet’s
son, Edward would direct the Columbia Institute for the Deaf and the Dumb zand the Blind. (This institute is now known as Gallaudet
University, the first US institution of higher education for the deaf, located
in Washington, D.C.).
In the 1820’s,
Louis Braille, a French instructor with blindness, taught students at the National Institute for the Young Blind in Paris.
Braille modified the Barbier "point writing" system, used to decode
army messages, to assist blind students to read using their fingers to lightly
ride over a series of embossed dots and dashes on cardboard (Roberts, 1986).
Following the trend in Europe around 1800, the first educational institutions
for the blind began to be established in the United States. Originally founded
as private philanthropic organizations these included the Perkins School for
the Blind, the New York Institution for the Blind, and the Overbrook School for
the Blind in Philadelphia.
As
educational approaches to students who were deaf or blind became more widely
disseminated, states started establishing and expanding the institutional
model; where students who were blind or deaf were housed and educated away from
their families and support systems. This institutional approach also became an
emerging model for training individuals with intellectual disabilities after a
rapid building expansion in the mid 1800’s (Braddock & Parish, 2001).
Following the Civil War, the training approach toward helping people with
mental retardation and mental illness was de-emphasized in favor of a more
custodial approach, where institutions would house residents with intellectual
disabilities throughout the course of their lifetime (Bicknell, 1895; Fish,
1892; Wilbur, 1888).
While
these institutional approaches sought to deliver professional treatment to
people with various disabling conditions, the person was objectified and the
goal was to help “fix” or restore the person to normalcy, a contrasting term to
deviancy, that first appeared in the English language circa 1855 (Davis, 1995).
This approach disempowered people with disabilities, as the problem was still
ascribed to them, with little concern for environmental contributions to the
disabling process.
Developments in the Mid-Twentieth Century
The
practice of ableism continued unabated until the late 1960’s. During the
preceding decades persons with physical disabilities, such as spinal injury,
post polio syndrome, cerebral palsy, and those with head injuries were
frequently restricted to their homes or other long-term care settings. There
were few advocates for these individuals and they lacked leaders and models of
empowerment that were emerging in other civil rights movements in the 1960’s.
In addition, there were no federal mandates or civil protections for citizens
with disabilities. They were denied equal access to the community including
transportation, education, housing, medical care, and employment.
During
the latter 1960’s the independent living movement was started through the
personal experience and leadership of several persons with severe disabilities
who were marginalized and discriminated against by those who were given the
mandate to help people with disabilities. These early pioneers responded to
this broad social injustice towards people with disabilities, experienced in
virtually every sector (public, private, medical). Ed Roberts was one of the first leaders of this movement, and his
tactics and actions empowered him to increase his personal independence and
challenge ableist attitudes and policies. Many others with severe disabilities
would later follow his model for change (Levy, 1988).
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Now that we have set the contextual stage on the issue of
ableism let’s explore this topic from a community psychology perspective.
The Struggle for Self-Determination
Persons with physical
and/or sensory disabilities are often a neglected group when considering
marginalized and disenfranchised groups. Yet, ironically, they offer
significant opportunities for community psychologists to learn from and to help
develop tools both to reduce the effects of ableism and to enhance personal
empowerment and community change. Until recently, people with disabilities were
spectators watching life pass them by—with little hope that they could have any
meaningful role in society, whether it be developing a relationship with
others, receiving the same educational opportunities as their nondisabled
peers, or obtaining employment without fear of discrimination because of their
disability. In the last decade awareness has increased regarding new and
emerging disability populations such as persons who have chronic fatigue
syndrome (Jason et al., 1999), multiple chemical sensitivity syndrome (Jason,
Taylor, & Kennedy, 2000), or neurological injuries due to violence
(National Institute on Disability and Rehabilitation Research, 1999). Persons
from these emerging groups face increased marginalization by society, and a
lack of responsiveness from social service providers who should be addressing
their needs.
As noted, ableism has become increasingly amplified by the warehousing of individuals with disabilities in institutional settings; by the sensationalistic and inappropriate portrayal of people with disabilities in the arts and the media; by the tear jerking and heart-wrenching national telethon appeals to give money to help the “crippled children” live longer. As one example, the community of Arnhem, in the Netherlands held a major telethon appeal for people with disabilities and created hetDorp, a self-standing community where persons with mobility limitations could live. While such fund-raising was well-intentioned, hetDorp is a segregated community for people with disabilities and limits opportunities for its residents to become more integrated into the Arnhem and surrounding communities.
People with disabilities have had to contend with
assigned identification resulting from medical models and categorical labels
that are diagnosis and deficit driven. Some argue that ableists assign cultural
prescriptions of disability based upon their own definition of normalcy.
Perhaps nowhere is ableism more frequently practiced than in the medical and rehabilitation system that is supposedly designed to help people with disabilities increase their participation and quality of life. Ostensibly, such a system, designed to help prevent further deterioration and disablement, should emphasize and support the concepts of prevention, empowerment, and choice. Gerben DeJong (1979), in his seminal article on “Independent living: From social movement to analytic paradigm” provided a comparative analysis of the medical model and the more consumer-friendly independent living or social model when working with people with disabilities. Table 1 summarizes DeJong’s comparison of these two models.
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DeJong points out that under the rehabilitation
paradigm (ableing model), the problem resides in the person, who needs to be
cured or rehabilitated to restore former levels of function and value. In
contrast, under the independent living paradigm (enabling model) the need for
cure or restoration is diminished when emphasis is placed on modifying the environment
to better accommodate people with disabling or chronic conditions.
Additionally, under the rehabilitation paradigm, professionals are considered
the most qualified interveners to ameliorate professional-identified problems.
In summary, the professional is in control and determines the outcomes to be
achieved and whether or not they are successful. In contrast, the independent
living model has strong resonance with the concepts of community psychology,
especially with the emphasis on self-help, empowerment, consumer sovereignty,
and control. Lappe and DuBois (1994) describe a similar paradigmatic contrast
with their “New Model Emerging in Human Services” (p. 156), which shares many
commonalities with the independent living model.
A
poignant example of the non-empowering and ableistic approach that some health
providers use with people with disabilities was captured in interviews with
disabled women about their reproductive experiences. Many women said that the
subject of sexuality was rarely discussed at home or in institutional settings
(Nosek et al., 1995). In some cases medical staff treated the women as though
they were ignorant (Walter, Nosek & Langdon, in press). Nosek and
colleagues captured the child birthing experience of a woman with bilateral
amputations above the elbow. This woman reported that she was in labor for 30
hours and that she had both of her artificial limbs removed during the delivery
process. She was not allowed to see her baby and feed her after delivery.
Media Portrayal Contributing to Ableism
Another factor that contributes to ableism in the
community and society in general is the issue of media portrayal of people with
disabilities. The words society uses to identify and describe specific groups
can affect how they are viewed and valued, whether the words are used to
describe gender, race, religion, sexual orientation, or in this case, actual or
perceived level of ability. As Longmore (1985) discussed, ableist language and
portrayal is ubiquitous, ranging from children’s books and cartoons such as the
evil Captain Hook and the stuttering Porky Pig to negative images in the film
industry such as the crazed paraplegic Dr. Strangelove, who wanted to destroy
the world, and the blind man with the extraordinary sense of smell in “The
Scent of a Woman.”
While these misrepresentations may foster ableistic
attitudes, perhaps more frequent and damaging are the numerous stories about
people with disabilities in the print and broadcast news media. There is an
irony in that people with disabilities are usually invisible to the media
(Ruffner, 1984). If they are reported in the media at all, they are likely to
be presented in one of two non-factual ways. First, as a human interest story
about their unfortunate circumstances—in which case descriptors such as “stroke
victim,” “helpless cripple,” “wheelchair-bound,” or “confined to a wheelchair”
are frequently used. The emphasis is not placed on the person but rather on the
defects or specific disabling condition. Instead of the more appropriate
“person first” language such as “person with a stroke,” the word “person” is
often eliminated altogether and terms such as a “polio victim” are used
instead. The other approach used by print and broadcast reporters and writers
is the overemphasis on the person with a disability being “courageous” or
superhuman. Examples of this include stories of extraordinary achievements,
such as the efforts of Mark Wellner, a paraplegic and US Park Service Ranger
who scaled the steep cliffs of Yosemite, a large mountain cliff in western US,
using only his hands. While this approach might seem more positive, it still
draws attention to the disability first and to the person second.
Unfortunately, this media portrayal is not limited to the popular literature,
printed news, and broadcasts.
Respected guides for professional writing, such as the
American Psychological Association’s Publications Manual (2001) recommends that
“The guiding principle for ‘nonhandicapping’ language is the integrity of
individuals as human beings.” (p. 69). However, ableist language continues to
be sprinkled throughout many professional peer-reviewed research articles,
often using archaic terms such as “wheelchair-bound” and “confined to a
wheelchair” instead of the more acceptable terms “person with a spinal injury”
or simply, “wheelchair user.” Box Two contains one approach used to influence
print and broadcast media to accurately portray people with disabilities in
their reports.
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Challenges for Community Psychologists
As Nelson and
Prilleltensky described earlier in the book, there are several emerging
metaphors and concepts that are ripe for consideration and action by community
psychologists. In the context of
ableism we will discuss power, diversity, partnership/collaboration, and
subjectivity/reflexivity.
Power
People with disabilities have been, and continue to be
one of the most disenfranchised and unempowered groups in the community. For
most, the issues raised are intensified because many people with disabilities
have low incomes and cannot afford the assistive technology, therapy, or
medications required for even a moderate quality of life. Box Three presents a
true case of a 44-year-old woman with diabetes.
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This case demonstrates a system-induced
disempowerment. Early Medicare and Social Security regulations were made by
policymakers who had little understanding of how these laws would eventually
affect people with disabilities. The programs were focused on older, retired
people who were no longer expected to work. Sadly, there was no voice for
younger people with disabilities on these issues. If the voice was present, it
was without power. For people with disabilities living in many developing
countries, especially where local and national economies are severely
depressed, this voice is further muted among the cacophony of needs and
politics of daily survival for non-disabled citizens, much less those with
disabilities.
Since the 1980’s community psychologists have been
working with persons with disabilities to help increase their participation and
empowerment in the community. Some achievements for persons with disabilities
include setting agendas for community development (Whang, Fawcett, Suarez de
Balcazar, & Seekins, 1982), participating in self-help and social support
groups (Suarez de Balcazar, Seekins, Paine, Fawcett, & Mathews ,1989), and
decreasing unauthorized parking in handicapped parking spaces (White, Jones,
Ulicny, Powell, & Mathews, 1988). In addition, Seekins and Fawcett wrote a
series of straightforward guides to assist consumers with disabilities to give
their personal testimony before policy makers (1982), write letters to public
officials (1984a), and write letters to the editor (1984b) to raise community
awareness of issues affecting people with disabilities. Fawcett et al. (1994a)
further describe these efforts using a contextual-behavioral model of
empowerment and illustrate this model with eight empowering case studies with
people with disabilities. These case studies demonstrate 18 tactics for
promoting empowerment with this population. Some of these tactics employ
person/group approaches such as increasing knowledge about issues, the causes
of problems, and possibilities for change; other tactics use environmental
approaches to promote empowerment such as removing or minimizing physical
barriers, and providing economic supports to reduce deprivation associated with
poverty.
As people with disabilities have become more empowered
they are starting to challenge ableistic practices, policies and attitudes. In
the mid 1980’s activist disability organizations such as ADAPT (Americans with
Disabilities for Accessible Public Transportation) started to address issues of
social injustice for people with disabilities in the US in a public and
forceful manner. Before the Americans with Disabilities Act was passed (major
civil rights legislation for people with disabilities), accessible public
transportation was virtually non-existent. ADAPT identified when and where the
American Public Transit Association (a national organization of public
transportation operators) met for their national conventions and planned a
series of “ADAPT actions.” Wheelchair users and others with disabilities
blocked the streets to keep traffic idle, while others chained their
wheelchairs to public buses. They gained attention to the inequities in
public-funded transportation, a system that was serving only non-disabled
citizens. ADAPT leaders were eventually able to convince the Executive branch
and the Congress to include the right to accessible public transportation as
part of Title III of the Americans With Disabilities Act, passed in 1990. Such
tactics of non-violent demonstrations have been used in other countries such as
Peru to gain attention from authorities concerning public disability concerns.
As community psychologists, there is always a tension that has to be recognized and negotiated when with working with people with disabilities. Unfortunately, many individuals with disabilities have been ill treated or marginalized by the medical, rehabilitation, and even research sectors.
Fawcett (1991) identified a comprehensive set of standards for community and behavioral psychologists conducting research with participants living in the community. The article identified several guidelines to help researchers avoid developing “colonial” relationships with their research participants, among other caveats. As a community psychologist conducting research on disability issues, and a person with a severe disability for over 38 years I am still viewed with a jaundiced eye by some in the disability community. Some disability advocates have accused social scientists of siphoning off money for “disability research” that could be better used for advocacy or direct services. Parts of these allegations are true, in the sense that disability research may have rigor, but often it is without practical applications for key stakeholders. Actively involving the disability community to shape and have an active voice in the research process can help neutralize part of this distrust. As an example of this partnership, our Center convened a panel of 14 national leaders and experts in the field of independent living and specified chronic conditions to help create a national survey on full participation in independent living. This process was critical to obtaining ownership and buy-in from national disability organizations as well as helping to create a survey that would be acceptable to responders with disabilities and chronic conditions. The survey has been disseminated through the Internet, email listservs and via surface mail. Once the survey is completed and the results tabulated, we will convene a town meeting with representative constituents to discuss identified disability concerns and strengths and discuss action plans to address concerns and enhance strengths. These collaborative partnerships provide constituents with knowledge and allow their assistance in the research, and later, dissemination process.
Diversity
When one thinks of diversity several categorical
headings come immediately to mind; race/ethnicity, gender, age, religion,
geographical representation, class bias, and sexual orientation. I have
observed that ability (inclusion of people with disabilities) rarely makes the
list. This lack of inclusion of people with disabilities in the diverse fabric
of community and society is emphasized when we examine the level of
participation and quality of life. First, people with disabilities make up one
of the largest minority groups. Kaye (1997) estimates that approximately 15% of
United States citizens have disabilities. Others suggest this figure is around
10% for Canadian (Crichon & Jongbloed, 1998), and 18% for Australian
(United Nations, 1993) populations. According to Kaye (1998), people with
disabilities, on average, are significantly poorer than their nondisabled
counterparts. The poverty rate is three times higher for adults with working
limitations than for those who are not limited in work activity. People with
disabilities also experience much higher rates of unemployment compared to
nondisabled workers. For example, Louis Harris and Associates (1998) found that
two-thirds of working age people with disabilities in the United States are
unemployed and only 20% are working full time. For those working-age
individuals with visual impairments (cannot read print) this unemployment percentage
increases to 74% (McNeil, 1993). It is very likely that this figure is even
much higher for people with disabilities living in economically depressed
countries.
Partnership and Collaboration
There has been a growing interest in involving people with disabilities as partners in community-based research with this population. This approach has also been coined “action research” (Karlsen, 1991), “participatory action research” (Whyte, 1991), and more recently “value-based partnerships” (Nelson, Prilleltensky, & MacGillivary, 2001). A hallmark of participatory action research (PAR) is that it empowers research participants to have an active role in shaping the research process. Some researchers suggest that this approach raises participants to a co-researcher role. Their insider status and local knowledge makes them equal co-researchers (Elden & Chisholm, 1993). The PAR philosophy values participants as experts based on their experiences and history with the particular research issue or problem that is being addressed. This relationship places the researcher in the role of learner to better understand participants’ experiences with respect to their disabilities.
The PAR approach to value-constructed research has been used across various community psychology issues, including community health initiatives (Fawcett et al., 1994b; Schwab, 1997), self-help groups (Chesler, 1991), and cooperative living (Whyte, Greenwood, & Lazes, 1989). In addition, PAR has been used to better understand various disability populations such as persons with psychiatric disabilities (Rogers & Palmer-Erbs, 1994), families with children with disabilities (Santelli, Singer, DiVenere, Ginsberg, & Powers, 1998; Turnbull, Friesen, & Ramierez, 1998), persons with developmental disabilities (Gilner & Sample, 1993), and adults with physical disabilities (White, Nary, & Gutierrez, 1997). White, Nary, and Froehlich (2001) describe how PAR can be integrated into the research process and provide examples of how it has been employed. Increasingly, the disability research literature describes the use of PAR philosophy. In fact, the Canadian Journal of Rehabilitation dedicated a special issue on PAR (Krogh, 1998).
Why is PAR so important in working with people with disabilities? As noted earlier, many people with disabilities have spent much of their lives dealing with the “medical model” system in which professionals were trying to “fix the problem,” a problem that always resided within the person. Under this system, persons with disabilities have little or no say over treatment goals, procedures, and outcomes of interest. The “professionals” determined the priorities.
Of course, recruiting consumers and participants to come to the table is only the first step in creating stakeholdership on research and training projects. Finding enough room at the table for all the players is another challenge that community psychologists must address to ensure that there is actual power sharing in the process. However, our experience shows us that there are several personal barriers that can interfere with this process of power sharing. Personal interests and histories of involved constituents can frustrate the stakeholdership process. For example, we convened a meeting of key informants to help create a national survey on full participation in independent living. We invited national leaders from the disability rights movement, who are very open and upfront about their disability and use strong advocacy tactics to create social change. Other key informants at the table represented groups with chronic conditions such as chronic fatigue syndrome and multiple chemical sensitivity syndrome. The leaders associated with these groups stated that many with such chronic conditions might not even label themselves as disabled. The working process of creating the survey brought frustration to representatives from the chronic condition areas. The critical issue was how to frame the survey questions so that responders with chronic conditions would actually relate to the survey. Those from disability rights movement talked about disability pride and being very direct about disability when creating survey questions. Those representing chronic conditions stated that if questions were only framed using the word “disability” many persons with chronic conditions would not identify with that label and view the questions as irrelevant. A dialogue on the philosophy of inclusion and independent living had to be convened so that key informants could better understand the importance of considering the optimal framing and taxonomy of survey questions to allow for a larger and more diverse response.
Another frustration we faced was the experience of dealing with the needs of a constituency that we knew little about. One of our stakeholders in the process was a person with multiple chemical sensitivity syndrome. This individual reported having very severe reactions to environmental contaminants, to which most individuals have a greater tolerance, or immunity. One issue we thought hard about was weighing the factors of cost versus participation. To accommodate this individual, we had to pay for several days of driving and hotel rooms for this person and a personal assistant because this constituent could not fly due to environmental concerns such as jet fuel fumes and other passengers smoking in and around the airport. Additionally, the hotel room and meeting rooms had to be scrubbed with a special non-toxic substance to decontaminate common household cleaners that could be life threatening for this individual. We also purchased 3 cases of water in special non-plastic bottles so that this participant could have adequate liquids for the duration of the trip. The expenses and time to learn about and help coordinate accommodations for this constituent’s needs were unexpected. However, our desire to have people with chronic conditions at the table made for a more inclusive and relevant survey instrument. This situation shows that community psychologists often have to work outside of what they know, and push the limits of accommodations to ensure a more representative and inclusive process.
There has been a growing interest and application of self-advocacy knowledge and skills, and personal empowerment for people with disabilities. These skills are increasingly being used to address personal and community disability concerns (Balcazar, 1990; Bond & Keys, 1993; Nelson, Ochocka, Griffin & Lord, 1998; White, Thomson, & Nary, 1997). However, there is a growing number of disability advocates who strongly resist any involvement in a project or event in which they are not included as stakeholders. Some individuals and disability organizations have adopted the slogan “Nothing about us without us,” which according to Charlton (1998) was first used by participants at an eastern European disability conference. As community psychologists and disability researchers extend their interests in working with people with disabilities, they will need to develop collaborative relationships with key informants from disability populations.
Subjectivity
and Reflexivity
As community psychologists and behavioral disability
researchers, we are committed to the use of rigorous methodology to produce
evidence-based outcomes that contribute to the science and understanding of
human behavior. While we believe that this is a worthy goal, we also
acknowledge that such outcomes are of little value unless we carefully consider
their relevance to those to whom the research is directed (White, in press).
We recently received a grant to establish the Rehabilitation
Research and Training Center on Full Participation in Independent Living (see
section on Resources at the end of the chapter), funded from the National
Institute on Disability and Rehabilitation Research (NIDRR). This Center has a
portfolio composed of 8 research and 14 training projects, each addressing ways
to increase participation in independent living, with special emphasis on
emerging disability populations such as those with chronic fatigue syndrome,
multiple chemical syndrome, as well as people with disabilities from diverse
cultures. Five community psychologists are working as part of the overall
research team for this national center.
To increase interaction and dialogue between consumers
and researchers, our Research and Training Center has affirmatively recruited a
national advisory board composed of disability researchers, consumers with
diverse disabilities, and consumers from underrepresented cultures. This board
provides advice and feedback on the conduct of our research and training
activities. In addition, each research project director consults with a
consumer-empowered team who provides its viewpoint concerning research
questions, goals, procedures, outcomes, and dissemination of research and
associated products. White et al. (2001) have described involvement of
consumers as collaborators in community-based disability research and provided
examples of how this partnership works in research and training activities.
To further increase the dialogue between researcher
and consumer, staff from the research and training center is committed to
writing articles for consumer publications and speaking at consumer meetings
and conferences. The center is currently planning a consumer consensus
conference, inviting consumers with disabilities to attend a national meeting
where results from the formative research projects will be discussed with the
audience. Feedback from this conference will help shape future research and
training activities for the next three years of this five-year federal award.
Vision and Values Guiding Community Work
Our work is guided by values consistent with the aims of community psychology. In chapter three, several core values for community psychology were described. While we embrace all of these values, in particular, our work is guided by the values of health, self-determination, participation/collaboration, diversity, and social justice. Living in an ableist society, people with disabilities encounter daily threats to the enjoyment of these values that many non-disabled individuals take for granted. Potential barriers include very low-income levels, physical and programmatic barriers, discriminatory policies, and the patronizing attitudes of employers, educators, and even other family members.
To enact these values, we routinely use key informants—such as disability advocates, independent living experts, and disability research scientists to help shape and guide our research goals, procedures, and interpretation of outcomes. In addition, we are building capacity through affirmatively recruiting persons with disabilities to pursue graduate training in the disciplines of behavioral and community psychology. Graduate students’ expertise and personal experience is further articulated in weekly meetings or our Research Group on Rehabilitation and Independent Living (see section on resources). The next section describes exemplars of our research and action activities for people with disabilities living in the community.
Examples of Research and Action
To illustrate the
approaches our research has taken to prevent or reduce the effects of ableism,
we cite two recent examples of our community-based work addressing the concerns
of people with disabilities. First, we will discuss the Action Letter Portfolio
and then conclude with a brief overview of a health promotion intervention for
women with severe physical disabilities living in the community.
Action Letter Portfolio
People with disabilities frequently face problems of exclusion, discrimination, and access. Yet many do not know how to take action to advocate for their concerns and the problems often go unresolved. The Action Letter Portfolio (ALP) is a social technology tool designed to help people with disabilities improve their advocacy letter writing skills (White, Thomson, & Nary, 1999). The ALP package includes a manual that both outlines the components and methods of writing an action (or advocacy) letter, and provides exemplars and practice lessons for manual users to learn and hone these skills. This self-administrated guide helps users to write their own personal disability concern letters and allows them to compare their letters with exemplary letters included in the manual. Both letter content (i.e., introduction to the problem, stating a rationale, providing evidence) and form (i.e., inside address, salutation, closing) are taught as essential elements of an effective advocacy letter. The manual guides letter writers where to send their letter and how to follow up after sending it. The ALP also contains a section summarizing relevant disability laws (e.g., Americans With Disabilities Act, Fair Housing Amendments Act), which can be cited in the letters as supporting information and evidence.
This research project
was developed using the PAR model. A researcher with a disability conceived the
idea for the manual as a result of personal frustrations in trying to write a
letter to an insurance company to advocate for a more durable and lightweight
wheelchair than their guidelines allowed. The individual seeking the wheelchair
wondered why no handbook or manual on writing effective advocacy letters
existed. There were many reference books on how to write business letters; why
weren’t there guidebooks on how to write advocacy letters?
As part of the manual development researchers sought exemplary advocacy letters from over 350 centers for independent living (CILs) across the US and then performed content and structural analyses to determine what made effective advocacy letters. In addition, researchers sought social validation from these CILs to see if such an action letter manual would be of value to their staff and consumers. Over 80% of the responders indicated it would be very valuable. As the manual was developed it was empirically tested with consumer-users to determine its effectiveness as a self-administered advocacy tool for addressing personal disability concerns in the community (White, Thomson, & Nary, 1997). Since the manual was published, numerous state and national training sessions with consumers and workers have taken place.
Health Promotion Interventions for Women with
Physical Disabilities
Physical activity guidelines issued by numerous
organizations recommend accumulating 30 minutes of moderate intensity activity
on most days of the week (National Institutes of Health, 1995; Pate et al.,
1995; USDHHS, 1996). However, over 60% of US citizens are sedentary and do not
achieve these recommended levels of activity. The sedentary level for people
with disabilities is at a much higher 73% (Heath & Fentem, 1997). To find
out more about the nature of this issue, investigators from our research center
surveyed women with disabilities across Kansas to identify barriers they faced
in engaging in physical activities (Froehlich, Nary, & White, in press).
Following an assessment of barriers, we designed a
pilot program to increase physical activity for women with disabilities. This
pilot served to inform a large-scale, Center for Disease Control funded study
to increase activity levels of women with disabilities. This study used a
randomized control trial to analyze the effectiveness of a community-based
intervention to help women with severe physical disabilities to increase their
weekly levels of physical activity (Final Report, 2001). The components of the intervention included
an educational workshop on increasing physical activity, individual counseling
to develop an activity plan, weekly activity logs for recording and reporting
activities, and peer support from another participant through weekly phone
calls.
Participants reported that their overall physical
activities increased by 54%. In addition, they more than doubled their amount
of time doing cardiovascular activities.
The study goal was remarkable because it encouraged women to self-direct
their increases in physical activity in their homes or selected community
sites. This approach was a more realistic alternative than regularly working at
a fitness center because of the barriers posed for the participants (cost, need
for accessible transportation, and lack of physical and programmatic
accessibility).
The Action Letter Portfolio project taught us that
consumers with disabilities could be taught to write advocacy letters. They
responded to our structured training scenarios by writing strong advocacy
letters. However, when asked to create a letter based on their own personal
disability concern, usually their written letters did not capture the skills
demonstrated by participants under training conditions. Our conclusion was that
consumers would have stronger responses to personal disability concerns about
which they are passionate and directly affected.
The project on increasing physical activity for women
with disabilities taught us that many participants want to exercise but
barriers such as cost, transportation, attitudes, and inaccessible facilities
prevent them from doing so. We noted that if they are given appropriate
information and provided with tools to self-monitor their progress, many women
would increase their physical activity over baseline levels. Additionally, we
discovered that social support that is arranged with a one-time workshop
partner is not functional and that participants were more likely to recruit
social support from a family member or friend with whom they have a deeper
connection.
Our research has taken a very applied and pragmatic
approach at evaluating personal and social problems and contexts. Most often
the results have been ameliorative rather than transformative, with changes
usually being made at the individual level. Part of this is due to our frequent
use of applied behavior analysis methodology, using single subject design
methods to approach a particular research question. Such methodology is often
directed at first-order change such as increasing a desirable behavior (i.e.,
physical exercise) or decreasing an undesirable behavior (i.e., powerlessness).
In our research over the past 20 years, I can think of
two strong examples of transformation, where second order change has truly
occurred. The first was the Media Watch
Campaign, conducted by Elkins, Jones, and Ulicny (1987). This project resulted
from consumer complaints about inappropriate wording and portrayals of people
with disabilities (see Box Two for more information) and led to the development
of a nationally recognized resource for the media on how to write and report on
people with disabilities. These guidelines have been incorporated into the
Associated Press Stylebook and other nationally recognized organizations. Perhaps one of the clearest indicators that
the guidelines are being used at the broader level is the frequency of requests
we have from national associations for copying and quoting part of the
guidelines---or outright plagiarizing them and putting their name on them!
The second example of transformation research was based on work done by Suarez de Balcazar, Fawcett, and Balcazar (1988), and White, Jones, Ulicny, Powell, and Mathews (1988). These research projects evaluated the effectiveness of upright signs to discriminate handicapped parking spaces from regular parking spaces. The latter study investigated the effectiveness of wording on handicapped parking signs to deter unauthorized parking in handicapped spaces. This study showed that handicapped parking signs clearly indicating the potential amount of fines that one could incur for parking illegally were more effective when compared to the standard handicapped parking signs. This information was presented to legislators from different states, which later passed laws requiring that fine amounts also had to be posted on the handicapped parking signs.
In Chapter 3, Nelson and Prilleltensky challenge us to
think beyond ameliorative and towards transformative research and action. One
should not be at the expense of the other, but we as community psychologists
must think beyond the immediate outputs and outcomes of our research to broader
changes and impacts. Part of this will come from careful planning and cultivation
of contacts and collaborations, while other serendipitous opportunities will
present themselves, for which we must be ready.
International Vistas
In this chapter we have examined the issue of ableism and its effects on people with disabilities. We discussed historical examples of how people with disabilities were treated and described how ableistic policies and practices deter them from full participation in community life. Values and concepts that could reduce the effects of ableism were identified and two exemplary studies were presented on approaches that could be used to empower and enable people with disabilities to increase their participation and quality of life.
This chapter has discussed research activity and
community applications with a focus on disability concerns in the US. It should
be recognized that our approach is not to just “throw money” at the problem
until it is solved. We believe that employing PAR philosophy can help community
psychology researchers and practitioners solve problems using local resources
or tapping into natural contingencies. While much of our work is grant funded,
we must ask the question, “How can this community intervention be sustained
once grant funding is depleted and researchers have left the setting?” Answers to
this question do not come easily, but as we closely work with key informants
and stakeholders, we will more likely increase the chances for functional,
sustainable solutions to personal and community disability concerns that
address ableism. Much of the social technology we use is transferable and
adaptable. We have been privileged to work with disability leaders and
constituents in Peru (White, Chapman, Jay, Branstetter, Mayo, & Isola,
2000). Specifically, we have worked with Peruvian colleagues to conduct
training on personal and systems advocacy. Training has been done with many
different disability groups. Many challenges exist in order for “personas con
discapacidad” to further their progress however. The cultural tradition of
Peruvians is to accept things as they are, and not to make waves. Thus the concept of advocacy is unusual and
needs to be discussed and adapted for their specific needs. Complicating the
process of social change are the severe economic conditions affecting most
Peruvians, with those with disabilities more proportionally so.
There are many needs for organizational and community development of Peruvian disability organizations. For example, the deaf club in Lima consists of approximately 150 individuals who have profound hearing loss or are deaf. However, many of these individuals cannot read and only have signing capabilities. Developmentally, the function of the deaf club is to provide a social atmosphere for its members. Elsewhere, disability groups tend to be fragmented and lack a critical mass for political and social change. For example, there are over 20 different national Peruvian organizations representing people who are blind. Unfortunately, many of these are focused on personal well-being versus relational and collective well-being. This self-determination approach is at the expense of building broader coalitions that can organize and create values of diversity, participation, social justice, and accountability.
More recently, we have embarked on another project in Ho Chi Minh City, Vietnam with Ford Foundation International Fellow, and colleague Hoang-Yen Thi Vo. Currently we are working on developing a disability concerns report survey to administer to people with disabilities in the Disabled Youth Association. There are many challenges in survey development and administration in a politically sensitive society that is very careful with information. In this regard, it was judged to keep a low profile regarding Ms. Vo’s educational involvement and contacts with the United States when conducting this research. The participants in the process have nearly completed the survey construction phase. Next, the survey will be distributed to people with disabilities, within the parameters set by Vietnamese authorities. We anticipate one of the largest challenges will be how to interpret and report the survey findings. On the one hand we are establishing a baseline of needs and concerns of Vietnamese people with disabilities to provide clear information for future research and action. On the other hand we are cognizant that the results will have to be carefully framed to reduce severe political consequences preventing interventions to address problems.
Working with citizens with disabilities living in the community is challenging but rewarding. There are many personal, social, and policy issues that wait to be tackled by aspiring community psychologists. The funding for research in this area is growing and many young scientists are giving serious attention toward careers in the field of disability research. As an example of the types of problems we encounter as community psychologists in the field of disability research, we have designed the following issue for your thoughtful analysis and course of action (see Box Four).
_________________________________
_______________________________
Resources
- Visit the
Rehabilitation Research and Training Center on Full Participation in
Independent Living at www.rtcfpil.org
- 2. Visit also the Research Group on
Rehabilitation and Independent Living at Kansas University: www.RGRIL.ku.edu
- In
the United States, visit National Organization on Disability at www.nod.org
- See also
American Association of People with Disabilities at www.aapd.com
- On 21
march, 2002, Anna Diamantopoulou, Commissioner responsible for Employment
and Social Affairs of the European Union delivered an important paper
entitled “Towards a Barrier Free Europe for People with Disabilities.” You
can read the paper on line at http://europa.eu.int/comm/dgs/employment_social/speeches/200302ad.pdf
- A
comprehensive directory on disabilities may be found at http://dir.yahoo.com/Society_and_Culture/Disabilities/Organizations/
Journals
- Disability
and Society
- Disability
Studies Quarterly
- Sexuality
and Disability
- Rehabilitation
Psychology
- Journal of
Disability Policy Studies
- Journal of
Applied Rehabilitation Counselling
- International
Journal of Disability, Development and Education
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Author’s Note
This manuscript was supported by the National Institute on Disability and Rehabilitation Research (Grant H133B000500). I wish to thank all of the consumers with disabilities who have helped to shape our Research and Training Center on Independent Living. In addition, I would like to acknowledge the help of Dr. Katherine Froehlich and Dorothy Nary for their thoughtful input on this manuscript.
All Correspondence should be sent to Glen W. White, Ph.D., Department of Human Development and Family Life, University of Kansas, 1000 Sunnyside Avenue, 4001 Dole Human Development Center, Lawrence, KS 66045. Email: Glen@ku.edu
Biodata
Glen W. White,
Ph.D.
Glen W. White, Ph.D., has been involved in the rehabilitation and independent living field for over 30 years. He is currently Director of the Research and Training Center on Independent Living at the University of Kansas. He serves as Principal Investigator of the recently funded Research and Training Center on Full Participation in Independent Living. Dr. White has had numerous opportunities to work with consumers with disabilities in identifying, developing and shaping on-going disability research. He has conducted research in the areas of housing, advocacy, developing community support for Independent Living Centers, and for the past several years he has been developing a systematic line of research in the area of prevention of secondary conditions. He is past president of the National Association of Rehabilitation Research and Training Centers, Chair elect of the American Public Health Association’s Disability Forum, and serves as an advisor and consultant to many national organizations. Dr. White is currently an Associate Professor in the Department of Human Development and Family Life and Directs the Research Group on Rehabilitation and Independent Living at the University of Kansas, where he teaches in the area of behavioral and community psychology, and disability studies.
A group of concerned
citizens with disabilities come to you about a problem they are frequently
encountering in the community—unauthorized vehicles parking in spaces
reserved for drivers or passengers with disabilities. This has been a growing problem and
these individuals are turning to you for your thoughtful analysis to find
a solution to this problem. After
careful consideration you come up with a plan for intervention? What is
it? How do you
approach these citizens with your idea?
How do you use the PAR process as part of your plan for solving
this problem? How do you go
about implementing the solution?
Maintaining it? Who are
stakeholders that might help you with this? What are the
implications for policy change? At
the local level? State level? White, G. W., Jones, M. L.,
Ulicny, G. R., Powell, L. & Mathews, R. M. (1988). Suarez de
Balcazar, Y., Fawcett, S. B., & Balcazar, F. E. (1988).
Box Four
COMMUNITY RESEARCH AND ACTION:
WHAT WOULD YOU DO?
|
Issue |
Rehabilitation Paradigm (Ableing Model) |
Independent Living Paradigm (Enableing Model) |
The problem defined |
Disability or
impairment Lack of
vocational skills |
Lack of autonomy Dependence on
professionals |
|
Problem focus |
On the
individual |
In the
environment In the rehab
process |
|
Problem
solution |
Intervention by
professionals |
Peer counseling Advocacy Self-help Consumer control Barriers removal |
|
Social role |
Seen as patient
or client |
Seen as Consumer |
|
Who is in
control? |
Professionals |
Consumer |
|
Desired
outcomes |
Restore maximum
function Obtain gainful employment |
(Adapted from DeJong, 1979)