Advocacy Issues and Strategies for the 21st Century
Key Informant Interviews
Bonnie O’Day and Marcie Goldstein, Cornell University Institute
The authors conducted key informant interviews with 16 disability advocacy and research leaders; half
of the interviews were with leaders in shaping national disability policy during and after passage of
the Americans with Disabilities Act of 1990, and half were with state and local leaders representing
constituencies who had not had a visible presence at the national level. During audiotaped telephone
interviews, we asked the informants to identify the top 5 advocacy priorities for the next 10 years, as
well as what strategies they thought could advance the disability advocacy agenda. Two overarching
themes emerged: the impact of poverty among people with disabilities and the connections among various advocacy issues. The authors discuss the 5 issues most often cited by the participants, as well as
issues particular to various constituencies, and draw conclusions about what strategies would advance
the disability agenda.
Disability researchers and scholars are increasingly consulting
disability advocates and constituency groups to assist them in
establishing research agendas (Scotch, 2002). Researchers are
including advocates and their representatives on their advisory
bodies, and the National Institute on Disability and Rehabilitation Research (NIDRR) routinely includes individuals with disabilities as part of its review process to ensure relevance of the
research it funds. Research on individuals with disabilities and
the problems they face has become more inclusive of people
with disabilities as experts and has incorporated participatory
action research and other qualitative methods (Cook & Burke,
2002; Hahn, 1993; O’Day & Killeen, 2002; Whyte, 1991).
Disability advocates, including those who are trained as researchers, have had a significant impact on disability research
during the past 20 years. The most significant contribution has
been to promote a shift away from a medical model of disability and toward a sociopolitical model that stresses the interaction between the person with the disability and his or her
environment. Growing from the personal and political experience of having a disability and from the field of disability
studies (Scotch, 2002), this philosophy de-emphasizes individualized approaches to addressing disability issues in favor of societal, rights-based approaches. The sociopolitical perspective
also has changed the way disability is defined; the definition
moved from one that focused on medical impairments to
one that focuses on function (Altman, 2001). This perspective
is based on the conviction that most problems associated with
disability could be addressed best through self-advocacy and
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the removal of disabling environmental barriers, stigma, and
public policies that restrict the independence and productivity of people with disabilities (Hahn, 1985).
We have become familiar with the history of the disability movement through the writings of such disability scholars
as Longmore (1997), Longmore & Umanski (2001), Pelka
(1997), and Scotch (1984). Throughout most of the past century, single disability and philanthropic organizations advocating for their own constituencies (e.g., people who are blind
or deaf) dominated the disability rights movement. These
groups based their advocacy on the moral entitlement of those
who are “afflicted” with disability and were relatively successful in obtaining benefits and services, such as support for medical research and cash assistance (Barnartt, Schriner, & Scotch,
2001). During the 1960s and 1970s, people with disabilities
and their organizations began to coelesce around common issues that affected people from a variety of disability groups,
including adoption of regulations to implement Section 504
of the Rehabilitation Act of 1973 and passage of the Individuals with Disabilities Education Act of 1990. Other early movement goals included requirements for accessible regular route
and paratransit services, de-institutionalization of people with
intellectual and psychiatric disabilities, and establishment of
Centers for Independent Living (CIL). Although disabilityspecific organizations continued to flourish and advocate for
their own constituencies, they began to come together to advocate for their common interests (Barnartt et al., 2001). This
strategy was particularly successful during passage of the Amer-
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icans with Disabilities Act of 1990, when advocates agreed to
support the legislation only if no disability group was left out
or disadvantaged (Watson, 1993).
Many of the movement’s early goals have been at least
partially achieved. The rights of people with disabilities are
protected under the Americans with Disabilities Act (ADA,
1990) and under equal rights legislation in many states. Most
states have consumer-controlled personal assistance programs,
which enable individuals with severe disabilities to live independently in their communities (Flanagan & Green, 1997).
Accessible regular route and paratransit services operate in communities with public transit. A strong network of CILs assists
people with disabilities by providing independent living services and advocacy throughout the country (U.S. Department
of Education, 2003). And the Individuals with Disabilities Education Act (IDEA, 1997) requires that children with disabilities receive an education in the least restrictive environment.
The last victory in the 20th century was passage of the Ticket to
Work and Work Incentives Improvement Act (TWWIIA, 1999),
which offered a choice in rehabilitation providers to Social
Security Disability Income (SSDI) and Supplemental Security
Income (SSI) beneficiaries and allowed states to adopt Medicaid buy-in programs.
Yet, significant issues remain to be addressed. High unemployment (Houtenville, 2000), limited income (McNeil, 2001),
insufficient medical coverage (Berk, Schur, & Cantor, 1995), a
shortage of community-based long-term care options (Nadash, 1998), and lack of access to technology (National Council on Disability, 2001) are crucial issues for the movement.
Cognitive, psychiatric, and multiple disabilities are increasing
in prevalence, and the systems to serve them are not adequate
to meet the growing need (U.S. Department of Health and
Human Services, 1999).
Disability advocates and their organizations are exploring these emerging issues, taking stock of their membership,
and evaluating their advocacy strategies (Half the Planet Foundation, 2002). Furthermore, these organizations, along with
service providers and federal agencies, have identified inclusion of minorities and underrepresented constituencies in the
disability rights and independent living movement as a crucial
issue for the coming decade (National Council on Disability,
2000; U.S. Department of Education, 2000). People with disabling conditions not traditionally included in the independent living movement are clamoring for inclusion, especially
people with psychiatric disabilities, mental retardation, multiple chemical sensitivity, and AIDS (Brown, 2000). A consensus is emerging that these groups must be included in the
disability movement and their issues must be included in the
broader disability rights agenda. Advocates are wondering how
a unified movement can be created with this diversity in issues
and groups. Researchers wonder how to obtain guidance in research from such a diverse community.
This article addresses some of these issues by asking the
following questions:
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1. What do selected leaders from the disability
community think are the top five issues that
will influence full participation in society?
2. What advocacy strategies will be most useful in
addressing these issues?
Method
This project was conducted under the auspices of the Rehabilitation Research and Training Center on Full Participation
and Independent Living (RRTC) at the University of Kansas.
The mission of the RRTC is to research, identify, and advance
person–environment strategies that encourage full participation in society for persons with disabilities representing diverse cultures, varying socioeconomic strata, and emerging
disability populations. Project researchers worked closely with
the RRTC national advisory panel to formulate this project.
The advisory panel was selected by RRTC senior researchers
to represent a variety of perspectives consistent with the Center’s mission. The panel comprised 14 individuals, including
representatives of such national organizations as the Association of Programs in Rural Independent Living, the National
Association of Research and Training Centers, and the National Council on Independent Living; representatives of disability policy organizations, such as the National Council on
Disability and the Institute of Medicine; representatives of
NIDRR-funded Rehabilitation Research and Training Centers;
Directors of Centers for Independent Living; consultants with
disabilities; and policy researchers.
The advisory panel devoted a 1-hour segment of an initial
meeting to discussing this research project. The advisory panel
wished to obtain the views of disability advocates who had
been visible leaders in shaping national disability policy during and after passage of the ADA, as well as state and local leaders who represented constituencies who had not had a visible
presence at the national level. In collaboration with the RRTC,
we developed definitions for traditional and underrepresented
disability leaders to ensure that both types of leaders were included among the interviewees. We defined traditional leaders
as individuals who have held key leadership positions in government or national disability advocacy organizations during
the past 5 years. We defined underrepresented leaders as individuals who held a leadership position in a state or a local disability organization or agency and who represented constituencies
that are not traditionally included in the national disability
leadership. Although the lines between these two groups were
not always clear, the delineation of traditional versus underrepresented leaders ensured that a cross-section of groups,
such as rural residents, racial and ethnic minorities, and individuals with various disabilities, were interviewed.
The advisory panel wished to include people from diverse cultures, varying socioeconomic strata, and underrepresented disability populations, as well as representatives of rural
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areas among the interviewees. The panel listed under-represented disability groups, including people with multiple
chemical sensitivity, psychiatric, and developmental disability.
The panel then suggested individuals to be interviewed in each
category; we used a snowball method to round out the interviewees.
Project staff conducted a literature review to uncover recent documents that establish a future research and advocacy
agenda. They identified three key documents: The Long-Range
Plan for Fiscal Years 1999–2003 (U.S. Department of Education, 2000), The New Paradigm on Disability: Research Issues and
Approaches (U.S. Department of Education, 2001; see Note 1),
and Closing the Gap: A Ten-Point Strategy for the Next Decade
of Disability Civil Rights Enforcement (National Council on
Disability, 2000; see Note 2).
The advisory panel felt that, taken together, these documents constituted the first steps in advancing a research and
advocacy agenda for the 21st century. The committee asked
that interviewees familiarize themselves with these documents.
Although the documents lacked specificity in the research and
issues they discussed, they could be used as a springboard for
discussion. Interviewees who wished to review these documents
in their entirety were provided with a link to the appropriate
Web site and document. Those who preferred a summary were
sent the executive summary and document conclusions.
We developed an interview guide consisting of five openended questions and several probes to obtain the perspectives
of key informants on establishing a disability advocacy agenda.
Our core questions were as follows:
1. What are the top five issues that must be addressed during the next 10 years for people
with disabilities to participate fully in their
communities?
2. If you represent a particular segment of the
disability community, what are the top five issues for your community? Are they the same as
or different from the issues listed in Question 1?
3. What research is necessary to advance your
issues?
4. What advocacy strategies will advance your
agenda?
5. How can disability advocates and researchers
form alliances to address these issues?
We screened each participant by telephone to determine if he
or she met the study criteria and to ascertain the particular
constituency or area of expertise he or she represented. We sent
each participant an advance copy of the interview instrument
and the three key documents. We also sent interview consent
forms for their review and obtained verbal consent by telephone at the start of the interview. Two researchers conducted
the telephone interviews; the interviews lasted from 30 minutes to 1 hour. The interviews were audiotaped and transcribed
by a professional transcription service.
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To analyze the data, we employed an approach outlined
by Miles and Huberman (1994) consisting of data reduction,
data display, and conclusion drawing and verification. A research assistant divided the transcripts into the responses to
each question (e.g., key advocacy issues, issues for specific constituencies, advocacy strategies necessary to advance these issues, and other comments). The two researchers reviewed these
sorted segments for accuracy and independently categorized
participant comments into content areas within each domain.
For example, we categorized answers to Question 1 into such
topic areas as health care, technology, and education. We then
compared our results to ensure that all topic areas were covered. We developed a grid to track the number of individuals
who provided each response (e.g., how many respondents chose
health care as one of their top five issues). We then went back
to the original interview transcripts and independently identified overarching themes. These overarching themes were finalized through in-depth discussions between the researchers.
Results
Our purposive sample consisted of 16 individuals; we categorized half as traditional leaders and half as underrepresented
leaders. We selected participants to obtain diverse representation of gender, geographic region, and rural or urban locale.
Our interviewees represented a variety of disabilities and perspectives. Several participants who were traditional leaders
had comments about specific segments of the disability community, in addition to their comments about the disability
community as a whole. Participant demographics, including
the specific disabilities or communities they said they represented, are shown in Table 1.
Overarching Themes
Two unifying themes emerged from the interviews. Participants tended to look at disability issues through the lens of the
low-income status of people with disabilities, making poverty
the first unifying theme. They mentioned unemployment and
the reliance on income assistance programs, such as SSI, SSDI,
or Temporary Assistance to Needy Families. One person asked,
Is the problem that the income support programs
are inadequate to conquer poverty? That is, they’re
under-funded and people don’t get enough to really
live on, like on SSI. Or is the problem that there’s
not enough opportunity to actually work? It’s probably both of them, and those two features of the environment, either good income supports or good
opportunities to work, they work against each other.
Most of the advocacy issues mentioned by participants,
including problems with health care, lack of transportation, acquisition of technology, poor education, unemployment, and
JOURNAL OF DISABILITY POLICY STUDIES VOL .
TABLE 1
Participant Characteristics
Gender
Male
Female
6
10
Age
20–29
30–39
40–49
50–59
60-69
2
1
5
6
2
Employment
Yes
No
13
3
Disability
Physical
Sensory
Psychiatric
Intellectual
No disability
MCS
7
2
1
2
2
2
Residence
Urban
Suburban
Rural
6
7
3
Race/Ethnicity
White
African American
Hispanic
Native American
Asian
11
1
2
1
1
Note. MCS = Multiple chemical sensitivities.
lack of community-based long-term care, were caused by the
reliance on public benefits or the inability to purchase these
services in the marketplace. Several participants noted the
links among poverty, race, gender, and disability and the complex nature of issues individuals with these characteristics face.
The second unifying theme that emerged was interconnectivity among various advocacy issues. Study participants
perceived the differing advocacy issues as related rather than
discrete. Participants would identify the issue of employment
as key, then begin talking about how important health care,
education, housing, and technology are to reaching full employment. Many stated that one problem would not be solved
without addressing related issues. As one participant said,
There is the idea of vertical silos, where employment is one area and housing is another area, but
the issues are interrelated. So having a focus on employment without also attending to housing would
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already be problematic. I’m talking about addressing
issues in the context of people’s lives.
Top Five Disability Issues
When asked to identify the top five disability issues, participants identified diverse and wide-ranging topics. There was
little agreement on the top five issues, even when categorized
into broad topics, such as health care. No issue received mention by a majority of participants. The top five issues were
health care, employment, technology, long-term care, and civil
rights enforcement.
Health Care. Health care was mentioned as an issue by
6 of the 16 people we interviewed, making this the most frequently cited issue. Participants viewed health care broadly,
encompassing long-term care and durable medical equipment.
The availability of health care insurance for people with disabilities was also a key issue. One participant said,
The critical feature is that some people can get it
and some people can’t. The model of insuring people against illness, for people who already have significant healthcare needs, is patently ridiculous. It’s
so silly, it’s hard even to imagine. You don’t insure a
house that’s already burning. The concept of insurance is to say that the risk of something bad happening is evenly split over all people and no one
knows who it’s going to be. But once you already
have a disability, you do know who it’s going to be;
it’s going to be you. And nobody wants to sell insurance to people who they know are going to cost
a lot of money. It has to be subsidized, or else the
person lives in poverty.
The lack of affordable health insurance for people with
disabilities ties them to the public benefits system and provides
a significant disincentive to employment. If they are able to
obtain insurance through an employer, the policy may not
cover the specific health services they need. One participant
explained that people with disabilities need specialized health
care and are unlikely to give up government benefits, such as
Medicare or Medicaid, until they feel sure they can receive the
care they need through an employer or some other source. Participants felt that access to specialists, particularly under health
maintenance organizations (HMOs), was particularly problematic. They pointed out that people without access to adequate
health care are likely to delay receiving high-cost specialty services, especially those who are poor. Many spoke about access
to health care with regard to their particular constituency. For
instance, a person with a physical disability mentioned access
to neurologists or physiatrists; a woman with developmental
and learning disabilities was concerned about paying for the
testing and medication for attention-deficit/hyperactivity disorder (ADHD); and a man with cerebral palsy (CP) had con-
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cerns about treatment. He stated, “Medical care for CP itself
and for the normal illnesses that everyone faces is also an issue.
For example, women with CP are three times more likely to
get breast cancer than people without CP, and it’s more likely
to go undetected. Very often, the health of people with CP isn’t
as good as it ought to be.”
Employment. Employment was one of the top five issues for 5 of the 16 participants. Unemployment for people
with disabilities is an intractable problem, according to participants. Several mentioned the high unemployment or
under-employment rates for people with severe disabilities.
One participant summarized the employment issue by saying,
Employment has been a continual concern and has
not dramatically improved since passage of the
ADA . . . about 70 percent of people with disabilities between 15 and 64 years of age are neither employed nor actively looking for work . . . and this
hasn’t changed since 1970. As far as having civil
rights and having money, it would have taken my
breath away if anyone had told me 30 years ago that
we would have what we have now. What has not
happened, and this bothers the hell out of me, is the
unemployment . . . In spite of everything I did,
everything the rest of us did, we couldn’t get people
to take the leap of faith and go off to work and start
to pursue the American dream. Here we are in 2002,
and we still have lots of people with disabilities not
pursuing the American dream, and that is very distressing.
The topic of employment covered a gamut of issues. One
participant felt that models for employer incentives from other
countries should be explored. Although some participants
talked about the need to educate employers about people with
disabilities and to ensure that the ADA’s employment provisions are strongly enforced, a more pervasive concern was the
lack of education, training, and job preparation among people with disabilities. One participant said,
In some cases it’s [the] attitudes of people with disabilities themselves, that they would not be the best
candidate for the job or that employers would not
be flexible about needs or accommodations that
they might require, when, in many cases, the accommodations would not be that large and would
be acceptable.
Other participants felt that the work disincentives in
SSDI and other welfare programs needed to be addressed to encourage people with disabilities to seek work. They suggested
changing SSDI eligibility requirements to separate receipt of
benefits from permanent inability to work, eliminating the
“cash cliff ” under SSDI (see Note 3). They also suggested ed-
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ucating consumers about work incentives. A woman with a psychiatric disability spoke poignantly about these barriers:
But how difficult it can be with the barriers, trying
to get off of Social Security and back in the work
force. This includes the work disincentives, but
there is also a sense of hopelessness about it, so that
people hardly look to work as a real possibility . . .
There are various obstacles, but the amount of
money they would need to earn on a job must equal
what it is they are getting now . . . if you added in
their food stamps and the Social Security, plus the
apartment subsidy. They would need up to the
$30,000 a year range. But they have this long period
of unemployment, and perhaps no real substantial
employment, which makes them, maybe, eligible
for entry-level jobs, but nothing that would come
close to there. On SSI, they are still well under the
poverty level, but at least they are secure.
Accessible Technology. Five participants mentioned technology as one of their top five issues. Participants were concerned about universal design of mainstream technology, as
well as the accessibility and availability of durable medical
equipment and other disability-related technology. Thinking
of technology in its broadest sense, one person said,
Information technology is extremely important . . .
the kinds of technology that are developing in the
workplace and in the school site, and how people
learn, and transportation—all of these things could
have the effect of broadening opportunities for people with disabilities, or the exact opposite of hemming them in further. Keeping an eye on that is very,
very important.
Participants expressed two significant concerns related
to assistive technology. First, they were concerned that people
with disabilities did not have access to the technology and
durable medical equipment they needed to function on the job
or participate in their community. They were concerned about
the cost of technology driving people who are not already poor
into poverty. The second issue was making information technology, such as the Internet, accessible to people with disabilities and the importance of becoming conversant in new and
emerging forms of technology. One participant emphasized
the significance of broadband communication and its utility
in transmitting digital information in Braille or even sign language over the Internet.
Long-Term Care. Four of the 16 people mentioned
long-term care as an advocacy issue that must be addressed.
They were especially concerned about Medicaid’s “institutional bias,” which financially favors institutional placement
over community-based care by automatically paying for nurs-
JOURNAL OF DISABILITY POLICY STUDIES VOL .
ing homes or institutional care and requiring states to obtain
waivers to fund community placements. Several participants
mentioned the implementation of the decision in L.C. v. Olmstead (1999) as a crucial advocacy issue. One person explained,
“Providing supports to people with disabilities who are currently in inappropriate placements or who don’t have the supports they need to live in the community in a way that does
not bust the budget and is economically feasible to both individuals and to government entities is really important.”
Participants supported the establishment of a community infrastructure to enable people with physical, cognitive, and
psychiatric disabilities to live in the community. A participant
representing people with developmental disabilities stressed
the need for a support person, similar to a personal assistant,
to assist individuals with cognitive disabilities in and outside
the home. Participants with physical and cognitive disabilities
spoke about the difficulty of recruiting qualified assistants.
A participant representing people with cerebral palsy mentioned another problem, “that people with cerebral palsy have
to become more willing to use personal assistance.” He said,
“A lot of people with CP feel that they can do it themselves.
Perhaps this opinion about being independent has been carried to an extreme. Very often people with CP are reluctant to
use personal assistance. In the workplace, in a competitive environment, in order to succeed, there are times and places when
personal assistance is required.”
Civil Rights Enforcement. Four of the 16 people mentioned civil rights enforcement as one of their top five issues.
Participants raised three distinct concerns related to the ADA.
First, participants were concerned about erosion of ADA provisions by U.S. Supreme Court and lower court decisions. Second, they were concerned about strong federal enforcement of
the ADA and other civil rights laws. One participant said, “We
just can’t always be talking about new policies when we have
a lot of exemplary policies, but we don’t have exemplary implementation and enforcement.” Third, participants stressed
the importance of implementation of civil rights laws at the
local level. A representative of a rural community said, “Ten
years later, we’re still explaining to Title II and Title III agencies or companies in rural areas what the ADA is all about . . .
I don’t think the general population promoted it as something
good.” Participants with sensory disabilities stressed access to
the Internet, sign language interpreters, and alternative formats as primary issues. Participants with multiple chemical
sensitivity mentioned the need for access guidelines related to
use of chemicals and other materials that produce allergies. A
Native American participant explained that the ADA does not
cover tribal governments and stated that tribal governments
need education on passage of their own civil rights laws.
One participant suggested that we begin to look beyond
the civil rights framework of the ADA to the concept of universal design. He stated, “We need to design programs that anyone can use, irrespective of disability or other status.” He cited
the example of the One Stop Centers currently mandated to
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provide employment services to the entire community. Another person stated, however, that universally designed programs
would not necessarily help people with multiple chemical sensitivity. She held that community health centers would never
meet the needs of people with certain types of disabilities. She
stated,“With community health centers, you’ve got fifteen minutes to diagnose, but if the disability is complicated, like chronic
fatigue syndrome, it’s not going to work. Most people who go
there will not get diagnosed and get appropriate treatment.”
Other Issues. Each of the following topics were mentioned by three participants as one of the top five advocacy issues.
1. Expand the independent living movement to
reach underserved constituencies, including
children and immigrants, and to address a
broader set of policy issues.
2. Improve the quality and efficacy of education
by ensuring that laws are enforced, increasing
access to extracurricular activities, addressing
minorities’ needs in the education system, and
recruiting individuals with disabilities at the
college and graduate school levels.
3. Change public attitudes regarding people with
disabilities through outreach to the media and
businesses.
4. Improve physical access for people with disabilities.
5. Become more sophisticated advocates and increase our understanding of complex issues.
Educate people with disabilities about their
rights and self-advocacy.
Specific Constituency Issues
In addition to representing the disability community as a whole,
13 of the 16 people we interviewed said that they represented
a particular constituency, such as an ethnic minority, an inner
city or rural community, or a particular disability group. We
asked these individuals what they perceived as the top five issues for their particular constituency. Many of the constituents
mentioned the five issues listed above, citing applications to
their particular communities. Additionally, three common
themes arose: participation in the broader disability community, services, and cultural issues. Other issues mentioned by
participants are shown in Table 2.
Participation in the Broader Disability Movement.
People from specific disability constituencies who traditionally have been underrepresented in cross-disability organizations, including people with developmental and learning
disabilities and those with multiple chemical sensitivity, expressed a desire for their constituencies to be involved in the
broader disability movement. They felt that a hierarchy exists
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TABLE 2
Specific Constituency Issues
Constituency
Learning Disability/
Developmental Disability
Issue
Train teachers to educate students with attention-deficit/
hyperactivity disorder.
Pay for job coaches, diagnostic
tests, and medication.
Decrease labeling and stigma.
Multiple Chemical Sensitivities
(MCS)
Increase funds for research.
Decrease stigma about MCS.
Develop access guidelines for
MCS.
Psychiatric Disability
Conduct research on the side
effects of psychotropic medication.
Address eugenics and right to
parenting.
within the disability community and that certain groups are
stigmatized and excluded from participation. One person with
multiple chemical sensitivities stated, “First, the stigma of
these conditions limits us, even within the disability movement . . . if you talk about reacting to perfumes and many other
chemicals, listeners will show a look of doubt and tune out.
Even people in the disability community do not take seriously
the number of physical symptoms you can have and how these
sensitivities affect your life.”A woman with developmental disabilities (DD) said, “People who have just a physical disability
and no developmental disability often try to hurry up things
too much for DDs to figure out what’s going on and to participate.”
A representative of the Deaf community stated that the
problem was twofold: Organizations like CILs perceive that
they lack the resources to serve Deaf people, and Deaf people
often do not see themselves as having a disability. Some participants expressed the need for single disability organizations
for their constituency to give them a power base on which to
build participation in the broader disability community.
Services. Seven of the 13 people who talked about their
constituencies mentioned problems with the service system.
Their primary concern was insufficient funding in numerous
areas. For example, a woman with developmental and learning disabilities mentioned the lack of funding for coaches to
assist with employment and independent living. A rural participant was concerned that plans for de-institutionalization
would bypass rural communities. She said, “I’m fearful that if
Olmstead really starts being implemented around the country,
the advocacy won’t be there to make it happen, or if it hap-
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pens, the infrastructure will not be there to support it in rural
communities.”A participant from a poor, urban community was
concerned about lack of services for inner-city youth: “I look
at services that are developed to support young men who have
dropped out of school, who happen to be fathers, and the number of those young men who are also served in special education. The links between those two things . . . I don’t know if
anyone is speaking effectively for that group of young people.”
Cultural Issues. Three of the participants said that the
culture of their disability or race sometimes created roadblocks
to participation in the service system. A participant representing the Deaf community stated that Deaf culture, with its
emphasis on Deafness as a linguistic minority rather than a
disability, created roadblocks to participation in the crossdisability movement and thus limited the political power of
the Deaf community. He stated,
Deaf culture teaches that people who are deaf do not
have a limitation; rather, they are just people who
use a different language. If you take that further, you
end up saying that if you are Deaf, you don’t have a
disability.
Participation in cross-disability organizations then becomes unlikely. A man representing the Asian community saw
Asian culture as a barrier. He explained,
If you’ve got individuals who are not acculturated
because of their relative newness to the country, in
terms of our values, norms and practices, then you’ve
got a double whammy. For one thing, you’ve got
disability, and the Asian culture looks at disability
as an issue of shame. They’re going to try to hide it,
not only from themselves, but also from other people. They’re not going to want to come out for services, because by coming out for services, you have
to self-identify that you have a disability. So if we
look at issues for this population base, what’s important is endeavors to promote outreach, and endeavors to get to culturally-based organizations and
get them aware of disability.
Advocacy Strategies
When asked what advocacy strategies should be used to promote the disability agenda, participants stated that the current
strategies, such as community organizing, litigation, public
education, and political demonstrations, had worked relatively
well and should be continued. Two additional overall strategies
emerged: building a stronger, more inclusive disability rights
movement and becoming more involved in the political process.
Building a Stronger Movement. Half of the participants
we interviewed stressed the need for a stronger, more inclusive
JOURNAL OF DISABILITY POLICY STUDIES VOL .
disability rights movement to pursue common advocacy issues.
One former policymaker stated,
I believe we have not effectively, in the movement,
dealt with the needs of children, or dealt with the issues affecting people who become disabled later in
life, after they’re out of school and potentially have
been working. We also have a lot more work that
needs to be done in the area of cultural competency
and cultural diversity. If we really have a goal of
reaching out to the entire population of disabled individuals, we need to have a better understanding
of what the diversities of these people are, from a
cultural competency perspective, but also from a
socioeconomic and a geographical perspective.
Other participants stressed the need to work together on
common advocacy issues, using a strategy similar to the one
that culminated in passage of the ADA. One former policymaker said,
There is something in the ADA for everyone, but
since the ADA, everyone is back to protecting his
own turf. We had a rule in the ADA coalition that
everybody had to invest in each other’s civil rights
and advocate for the whole thing. This protects more
than your own constituency. So the community
should try to recreate the ADA experience.
Another person supported the idea of developing a common agenda. He said,
Part of the difficulty with advocating for things for
people with disabilities is that we become our own
problem. We start to segment our advocacy efforts.
It’s a mental health thing, it’s a DD thing, it’s a blind
thing, it’s a deaf thing, its a physical disability thing.
We take an issue and pull it in ten different directions. The people who need to look at the policy, and
who have the power to enact the policy, they say,
“You guys don’t even have it together. Come back to
me when you guys are ready to talk.” That’s where
the breakdown occurs, and that’s unfortunate.
Other participants suggested that the disability community should reach out to civil rights groups and organizations
representing the poor. A participant who represented an urban
minority population said,
It’s important to support people at the grassroots
level to mobilize, to raise an awareness of issues in
their own community. Then, using that as a strategy, begin to approach more traditional civil rights
groups or community groups about including people with disabilities in their efforts . . . . We must make
15/ NO. 4/2005
247
sure that people with disabilities, who are part of
these communities, and who may or may not be
part of these civil rights organizations, be supported
in taking the lead in doing that.
Involvement in the Political Process. One fourth of the
people we interviewed stressed the importance of becoming
involved in the political process throughout the year, not just
during campaigns and elections. They felt that the disability
community could establish a strong political power base by educating political leaders, such as state and local congressional
representatives and administrators at all levels of government,
about disability issues. A rural participant said, “We also need
to elect leaders or find people with disabilities to function in
leadership, elected, and appointed capacities, so that people
are at the table; you can’t talk about them, you have to talk to
them.”
Discussion and Conclusions
No single issue rose to the top as “the burning issue” for disability rights leaders. In fact, there was little consensus on the
five key issues informants identified. Among the top five issues, no issue received mention by a majority of participants;
of the 16 interviewed, only 6 mentioned health care and only
5 mentioned employment or technology. And within each
issue, there was little agreement about which aspect of the issue
deserved priority. For example, participants concerned about
unemployment mentioned many issues, including work disincentives in the Social Security benefits programs, lack of employer incentives, lack of civil rights enforcement, and lack of
training and job preparation among people with disabilities.
Participants concerned about health care mentioned lack of
health insurance, limited access to long-term care and durable
medical equipment, limited access to specialists, and the need
for affordable prescriptions and other therapies. Representatives of specific constituencies, such as rural residents, ethnic minorities, and single disability groups, shared many of the same
issues but mentioned only specific aspects of those issues that
were relevant to their community. For example, people with
multiple chemical sensitivities mentioned health-care professionals’ lack of knowledge about their disability, whereas rural
participants mentioned lack of health-care providers and
scarcity of employment opportunities in rural areas.
Although there were significant differences among the disability leaders we interviewed on the top five advocacy issues
crucial to the advancement of disability rights, two overarching themes emerged. Almost all the participants emphasized
issues related to the poverty and benefits dependency of individuals with significant disabilities, and most mentioned the
interconnection among various disability issues, such as housing, transportation, long-term care, and employment. They
understood that policymakers cannot successfully address one
issue without giving attention to many other significant issues.
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JOURNAL OF DISABILITY POLICY STUDIES VOL .
When asked to identify the advocacy strategies that should
be used to promote their disability agenda, participants stated
that the current strategies had worked relatively well and
should be continued. These included community organizing,
litigation, public education, and political demonstrations. They
suggested two additional overall strategies: building a stronger,
more inclusive disability rights movement and becoming more
involved in the political process. One participant suggested
that the disability community would become stronger through
alliances with groups advocating for services to the poor and
other civil rights organizations.
The diversity and complexity of issues makes a unified,
single-issue-focused disability advocacy community highly
unlikely. Particular issues will continue to be more important
for certain constituencies or disability groups; for example, accessible computer technology is more important for people
with sensory disabilities, whereas structural accessibility is crucial for people with physical disabilities. It seems quite likely
that particular constituencies will continue to advocate for their
own priority issues as they have in the past. It also seems likely
that a plethora of organizations, including single disability,
cross-disability single issue, and cross-disability multiple issue
organizations will continue to advocate for their own agendas
as Barnartt and her colleagues (2001) suggest.
Problems that cut across disability groups, such as employment, health care, or civil rights, are extremely complex,
and it seems unlikely that the U.S. Congress will take a holistic approach to addressing these issues. The diversity of perspectives, even within each issue, makes it extremely difficult
to forge common agendas even among advocates who prioritize the same issue. Such organizations as the Coalition for Citizens with Disabilities (CCD) have established issue task forces
that offer advocacy organizations the opportunity to combine
forces to address an issue of importance, such as health care
or employment. Another effective strategy might be to work
with broader groups outside the traditional disability community that support a particular issue and offer the disability
community support if disability issues are addressed. For example, inclusion of prescription drug coverage under Medicare is an important issue for SSDI beneficiaries as well as for
senior citizens, and baby-boomers with aging parents are increasingly advocating for long-term community services,
which have been on the advocacy agenda of disability organizations for many years.
Advocates must keep in mind the poverty status of large
percentages of individuals with disabilities in advocating for
any issue. Using the U.S. Census Bureau’s definition of a severe
disability (see Note 4), 42% of people with severe disabilities
have annual household incomes below $20,000 and 53% of
persons age 65 and over with severe disabilities are in this category (McNeil, 2001). U.S. Census figures also show that the
estimated median household size-adjusted income of working age civilian men with a disability averaged over 1999 is
$15,832, as compared with $33,529 for nondisabled men.
Comparative figures for women are $14,173 and $30,413 (Houtenville, 2000).
15/ NO. 4/2005
Low-income status affects almost every facet of life, including training for employment, transportation, health care,
housing, education, technology, and participation in community life. The importance of services to assist people in addressing these issues or to address specific disability communities
cannot be overemphasized. The representatives of specific constituencies mentioned the lack of services to their community
as a primary issue. Such services included health care or longterm care to address specific aspects of disability, employment
and community-based services in rural or inner-city areas, or
services to address the needs of people with multiple problems,
such as poverty, lack of education, and disability. The participants felt that their constituencies were the first to lose when
budgets became tight or that their services were an “add on”
when the needs of other service recipients were well met. Disability rights groups could increase their relevance to these populations by advocating for increased services, particularly for
underserved communities.
Low-income people with disabilities may have more in
common with poor people than they do with middle-income
people with disabilities, because lack of resources effectively
excludes them from the mainstream and bars them from purchasing the disability-related services they need. Reliance on
publicly funded services, such as housing, medical care, and
transportation, makes an alliance between poverty and disability organizations natural. The disability movement could be
strengthened through alliances with such organizations, which
may have the additional credibility that large constituencies
bring. In addition, organizations advocating for low-income
individuals are often directed by service providers and could
benefit from the self-direction emphasized by disability organizations.
Implications for Research
Research can play a vital role in advocacy for disability services
and rights. Researchers and advocates can build successful collaborations by ensuring that research priorities be relevant to
the disability advocacy agenda. The issues important to the
disability community indicate that research that addresses the
interaction between the individual and the environment are
most crucial. High-quality, relevant research could be an important tool in advocating for increases in services and civil
rights protection by evaluating the cost-effectiveness of such
programs. Forums for advocates and researchers to work together in establishing the research agenda would assist researchers in developing research questions and in educating
advocates about research methods. Finally, research on participation of individuals with disabilities in the political process,
as suggested by Barnartt et al. (2001) might assist advocacy organizations in promoting greater involvement.
Limitations of the Study
This study has certain limitations. First, we interviewed only
16 advocates who were selected by the RRTC on Full Partici-
JOURNAL OF DISABILITY POLICY STUDIES VOL .
pation and Independent Living Advisory Committee. We did
not interview sufficient numbers of individuals to truly represent various constituencies (e.g., people with psychiatric disabilities, individuals from rural areas). The results of the study
may have varied, depending on the advocates selected for interview. We noted the absence of certain issues among the top
five areas of concern. For example, only three participants
mentioned elementary and secondary education and only one
participant mentioned housing and transportation among
their top five priorities. We do not know whether these issues
were omitted because of the small number of individuals interviewed for the study, or whether different interviewees
would have prioritized different issues. Finally, we did not obtain the depth of personal knowledge and experience that
could have emerged with a more in-depth interview.
ABOUT THE AUTHORS
BONNIE O’DAY, PhD, is a senior research associate at the Cornell
Center for Policy Research (CCPR), where she conducts research on
employment, health care, and income support programs. She has recently published on primary care for people with psychiatric disabilities, participants outcomes at Centers for Independent Living, and
policy barriers for people with psychiatric disabilities who want to
work. MARCIE GOLDSTEIN, MA, is a private consultant with The
New Focus Partnerships, where she does logistics planning and research
on a variety of disability issues. She is also a special projects coordinator at the ENDependence Canter of Northern Virginia (ECNV).
This work was conducted while the researchers were employed at
CESSI, a private consulting firm specializing in disability research and
policy. Address: Bonnie O’Day, Cornell University Institute for Policy Research, 4301 Connecticut Ave., NW, Ste. 330, Washington, DC
20008; e-mail: bonnoday@comcast.net
AUTHORS’ NOTE
The contents of this article were developed under Grant
H133B000500 from the Department of Education, National Institute
on Disability and Rehabilitation Research, to the Rehabilitation Research Center on Full Participation and Independent Living. The
opinions expressed in this article have not been endorsed by the federal government and do not necessarily represent the policy of the
Department of Education.
NOTES
1. These two documents highlight the importance of more fully integrating disability research into the mainstream of U.S. policy, especially with regard to healthcare, science, technology, and the
economy. They stress the need for research that explores the dynamic
interplay between person and environment, the adaptive changes
that occur during a person’s lifespan, and how the individual and
society adapt to disability. The documents focus on prevention
and alleviation of secondary disabilities and co-existing conditions,
health maintenance over the lifespan, assistive technology and the
application of universal design, telecommunications and computer access, and access to the architectural environment, in addition to ongoing research in employment, health, technology and
independent living.
2. The National Council on Disability action plan assumes that people with disabilities come from all socioeconomic and cultural
15/ NO. 4/2005
249
backgrounds and stresses inclusion of diverse groups in the disability movement. It is based on building bridges between different
elements of the disability community and between the disability
community and other civil and human rights groups to advance
equality of opportunity. It emphasizes empowerment through information and training that is accessible to all, including people
with sensory and cognitive disabilities or people who speak different languages and come from different cultural backgrounds.
It encourages national and local organizations to become involved
in the political process and to make agencies accountable for enforcement of civil rights laws through ongoing grassroots monitoring.
3. Once an individual who receives SSDI benefits earns $810 per
month for more than 9 months, he or she may lose the SSDI benefits.
4. The U.S. Census Bureau defines “severe disability” as a long-term
health condition that requires assistance in performing (or causes
an inability to perform) major life activities, such as bathing, dressing, and meals preparation; use of a wheelchair, cane, crutches, or
a walker; a significant mental or emotional condition that seriously interferes with everyday activities; or receiving federal disability benefits.
REFERENCES
Americans with Disabilities Act of 1990, 42 U.S.C. § 12101 et seq. (1990)
Altman, B. M. (2001). Disability definitions, models, classification schemes,
and applications. In G. L. Albrecht, K. D. Seelman, & M. Bury, (Eds.),
Handbook of disability studies (pp. 97–122). Thousand Oaks, CA: Sage.
Barnartt, S., Schriner, K., & Scotch, R. (2001). Advocacy and political action.
In G. L. Albrecht, K. D. Seelman, & M. Bury (Eds.), Handbook of disability studies (pp. 430–449). Thousand Oaks, CA: Sage.
Berk, M. L., Schur, C. L., & Cantor, J. C. (1995). Ability to obtain health care:
Recent estimates from the Robert Wood Johnson Foundation National
Access to Care Survey. Health Affairs, 14, 139–146.
Brown, S. (2000). Freedom of movement: IL history and philosophy. Houston,
TX: Independent Living Research Utilization.
Cook, J. A., & Burke, J. (2002). Public policy and employment of people with
disabilities: Exploring new paradigms. Behavioral Sciences and the Law,
20, 541–557.
Flanagan, S. A., & Green, P. (1997). Consumer-directed personal assistance services: Key operational issues for state programs using intermediary service
organizations. Cambridge, MA: The MEDSTAT Group.
Hahn, H. (1985). Disability policy and the problem of discrimination. American Behavioral Scientist, 28(3), 293–318.
Hahn, H. (1993). The potential impact of disability studies on political science (as well as vice versa). Policy Studies Journal, 21(4), 740–751.
Half the Planet Foundation. (2002). Disability policy in the 21st century:
Moving on up. Retrieved January 17, 2003, from http://www.
halftheplanetfoundation.org
Houtenville, A. (2000). Economics of disability research report #2: Estimates of
employment rates for persons with disabilities in the United States by state,
1980 through 1998. Ithaca, NY: Cornell University, Research and Rehabilitation Training Center for Economic Research on Employment Policy for Persons with Disabilities.
Individuals with Disabilities Education Act of 1990, 20 U.S.C. § 1400. et seq.
(1990) (amended 1997)
L.C. v. Olmstead, 527 U.S. 581 (1999).
Longmore, P. K. (1997). Political movements of people with disabilities: The
League of the Physically Handicapped, 1935–1938. Disability Studies Quarterly, 17(2), 94–98.
Longmore, P. K., & Umansky, L. (2001). The new disability history: American
perspectives. New York: New York University Press.
McNeil, J. (2001). Americans with disabilities 1997: p. 70–73. Current population reports. Washington, DC: U.S. Census Bureau.
250
JOURNAL OF DISABILITY POLICY STUDIES VOL .
Miles, M. B., & Huberman A. M. (1994). Qualitative data analysis (2nd ed.)
Thousand Oaks, CA: Sage.
Nadash, P. (1998). Independent choices. American Rehabilitation, 24(3), 15–20.
National Council on Disability. (2000). Closing the gap: A ten-point strategy
for the next decade of civil rights enforcement. Washington, DC: Author.
National Council on Disability. (2001). The accessible future. Washington, DC:
Author.
O’Day, B., & Killeen, M. (2002). Research on the lives of people with disabilities; The emerging importance of qualitative research methodologies.
Journal of Disability Policy Studies, 13(1), 9–15.
Pelka, F. (1997). The ABC-CLIO companion to the disability rights movement.
Santa Barbara, CA: ABC-CLIO.
Rehabilitation Act of 1973, 29 U.S.C. § 701 et seq. (1973)
Scotch, R. (1984). From good will to civil rights: Transforming federal disability
policy. Philadelphia: Temple University Press.
Scotch, R. (2002). Paradigms of American social research on disability: What’s
new? Disability Studies Quarterly, 22(2), 23–34.
15/ NO. 4/2005
Ticket to Work and Work Incentives Improvement Act of 1999, Pub L. No.
106-170 (1990).
U.S. Department of Education. (2003). Evaluation of the title VII, chapter 1
part C Centers for Independent Living program. Washington, DC: Author.
U.S. Department of Education. (2001). The new paradigm on disability: Research issues and approaches. Washington DC: Author.
U.S. Department of Education. (2000). The long-range plan for fiscal years
1999–2003. Washington, DC: Author.
U.S. Department of Health and Human Services. (1999). Mental health: A report of the Surgeon General. Rockville, MD: Author.
Watson, S. (1993). A study in legislative strategy: Passage of the ADA. In L. O.
Gostin & H. Beyer (Eds.), Implementing the Americans with Disabilities
Act: Rights and responsibilities of all Americans (pp. 25–34). Baltimore:
Brooks.
Whyte, W. F. (Ed.) (1991). Participatory action research. Newbury Park, CA:
Sage .
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