Nothing About Us Without Us: Does Action Research in Developmental Disabilities Research Measure Up?

Nothing About Us Without Us: Does ActionResearch in Developmental Disabilities ResearchMeasure Up?Erin Stack* and Katherine E. McDonald†

*Portland State University, Portland, OR; and †Syracuse University, Syracuse, NY, USA

Abstract Action research—research collaborations between professional researchers and community members to address commu-nity concerns—has become increasingly popular in developmental disability research. Advocates of these approaches argue thatthey reflect the value of including people with disabilities in matters that affect them and generate benefits for people with disabili-ties and for research. However, it is not clear how well action research with adults with developmental disabilities reflect core actionresearch principles. The authors identified 21 action research projects with adults with developmental disabilities in English-language referred journals. The authors found that the majority of these projects took place in the UK or the United States, withindividuals with intellectual disabilities, were published in or after 2005, and used qualitative methods to examine research aims onsocial issues important to adults with developmental disabilities. They reviewed common challenges, facilitators, and indicators ofsuccess described by authors and found that relatively few projects can be classified as high on the continuum of shared power.Based on these findings, the authors recommended a continued focus on the accurate understanding and application of actionresearch models, building our knowledge of and evidence base for effective tools, strategies, resources, and personal characteristicsfor action research with adults with developmental disabilities, adequately funding this research, and pursuing a broader array ofresearch methods. The projects studied herein provide evidence for the promise and possibility of action research with adults withdevelopmental disabilities.

Keywords: action research, developmental disability, inclusive research, intellectual disability, participatory research

INTRODUCTION

Once neglected and segregated, people with developmentaldisabilities are demanding full inclusion in all aspects of com-munity life and a say over matters that affect them (Dybwad &Bersani, 1996; Gilbert, 2004). This paradigm shift, known by thedisability rights movement mantra “Nothing About Us WithoutUs,” is transforming the role of persons with developmentaldisabilities in society, and influencing the conduct of research.Rejecting the passive role of subject, many believe that peoplewith developmental disabilities should have influence over

research that can affect their lives (Kiernan, 1999). Indeed, agrowing number of researchers are engaging in action researchwith people with developmental disabilities (Walmsley, 2001).These researchers emphasize the importance of sharing controlover research, noting that such approaches may benefit both thepopulation and the quality of the research (Bigby & Frawley,2010; Conder, Miller, & Mirfin-Veitch, 2011).

From its conception, action research viewed social change andthe inclusion of those affected by that change as critical to theresearch cycle (Lewin, 1946; McTaggart, 1991). Since then, diversebranches of academic-community partnerships have emergedincluding participatory action research (PAR; Whyte, 1991),community-based participatory research (CBPR; Israel, Schulz,Parker, & Becker, 1998), emancipatory research (Oliver, 1992),inclusive research (Walmsley, 2001), and participatory research(Cocks & Cockram, 1995). While there are differences in defini-tions and points of emphasis, there are also many similarities.Shared core principles include pursuing research that is anequal, reciprocal cooperation between community membersfrom exploited or oppressed communities and academics, fostersco-learning experiences focused on constructively addressingcommunity concerns, produces an empowering process forcommunity members to exercise control over their lives, anddemonstrates a balance between research and community action

Received July 24, 2012; accepted May 9, 2013Correspondence: Katherine E. McDonald, Department of Public Health,Food Studies and Nutrition, Falk College of Sport and Human Dynamics,Syracuse University, 426 Ostrom Avenue, Syracuse, New York 13244, USA.Tel: 315 443 5313; Fax: 315 443 9807; E-mail: [email protected] paper is an updated version of a presentation given as part of the specialhonors’ S. Raffaele Tosinvest JPPID Symposium for Young InvestigatorAwardees at the 13th Quadrennial Congress of the International Associationfor the Scientific Study of Intellectual and Developmental Disabilities inHalifax, Nova Scotia, Canada, on July 11, 2012.Authors’ Note: This research was supported in part by a grant from the Asso-ciation of University Centers on Disabilities (AUCD) and the Centers forDisease Control and Prevention (CDC, RTOI; PI Hughes). The opinionsexpressed herein are ours and not necessarily those of the funder.

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Journal of Policy and Practice in Intellectual DisabilitiesVolume 11 Number 2 pp 83–91 June 2014

© 2014 International Association for the Scientific Study of Intellectual and Developmental Disabilities and Wiley Periodicals, Inc.

mailto:[email protected]

centered on individual and systems change (Brydon-Miller, 1997;Chappell, 2001; Cocks & Cockram, 1995; Israel et al., 2003). Assuch, action research (the term we employ herein to refer tothese approaches collectively) begins with community-focused,problem-centered research and transforms relationships betweenacademics and community members (Minkler, 2005).

Action research is valued among many in disability research,particularly as it builds from socially informed models of dis-ability and respect for the abilities of people with disabilities(Cocks & Cockram, 1995). Proponents emphasize that actionresearch is a way to infuse disability rights into research and toimprove the lives of people with disabilities by encouragingresearch in which they are empowered and the research benefitsfrom their expertise (Balcazar, Keys, Kaplan, & Suarez-Balcazar,2006; Barton, 2005; Chappell, 2001). Scholars have noted thatwhen persons with developmental disabilities are engaged in thedecision-making process, harmful decisions are less likely to bemade (Clements, Rapley, & Cummins, 1999). Advocates furtherargue that in action research people with disabilities have oppor-tunities to learn, thereby developing greater confidence and self-esteem and potentially positively influencing their subsequentemployability. Action research may also yield research that ismore relevant and accessible to people with disabilities; qualitiesthat may result in more representative findings via improvedparticipation rates. Similarly, action research can benefit theinterpretation of findings and the acceptability of subsequentrecommendations (Balcazar et al., 2006; McLaughlin, 2010).

Nonetheless, there are challenges to and criticisms ofaction research with people with developmental disabilities. Forexample, action research asks researchers to take a value stanceand pursue action, build relationships with people with disabili-ties, share control over research, be reflexive, address complexethical considerations of power, and dedicate increased timeand resources (Balcazar et al., 2006; Chappell, 2001; Cocks &Cockram, 1995; Dowse, 2009; McLaughlin, 2010). The timepressure of seeking funding and university rules for payment canalso prove challenging (Chappell, 2001; McLaughlin, 2010).Others direct attention to questions about authentic equity andparticipation in endeavors that demand intellectual skills, par-ticularly in data collection and analysis, for a population inwhich many experience challenges in education, literacy, andunderstanding. Because of this, some argue that people withdevelopmental disabilities will always need support and thatcurrent methods of including them in action research are inad-equate. Others wonder whether action research can be fullyimplemented with this population (Chappell, 2001; Gilbert,2004; McTaggart, 1991).

As a growing number of researchers attempt to shift beliefsystems to embrace the values of the disability rights movement,it is time to assess and reflect on the fit between these ideals andpractices. Our purpose here is to describe the state of actionresearch with adults with developmental disabilities and analyzethe fit between the theory of action research and its practice inthis context. We address the following questions:

1. What is the extent and nature of this research?2. What are the reasons authors pursue this research?3. What challenges, facilitators, and successes are described

by authors?

4. How well does this research adhere to action researchprinciples, including the level of participation of peoplewith developmental disabilities? Does the degree ofadherence to principles vary with author-described actionresearch paradigms?

METHODS

We conducted a comprehensive literature review to identifyarticles that describe action research projects with adultswith developmental disabilities. We searched databases (e.g.,PsycINFO, Medline, and Google Scholar) using the terms“disability,” “intellectual disability,” “developmental disability,”“learning difficulty,” “learning disability,” “cognitive disability,”or “service user” paired with “community-based participatoryresearch,” “CBPR,” “participatory action research,” “PAR,” “actionresearch,” “collaborative research,” “emancipatory research,” or“inclusive research.” We also searched the contents of 12 interna-tional journals that publish research related to people with dis-abilities. These searches yielded 110 articles. We reviewed theirreference lists and located 13 additional articles for an initialsample of 123 articles. We then reviewed abstracts to identifyreports of action research with adults with developmental dis-abilities that met the following criteria: (1) are in the Englishlanguage, (2) appear in referred publications, (3) report onempirical research, (4) focus exclusively on adults with develop-mental disabilities, and (5) report on author-identified actionresearch. We found 34 abstracts meeting these criteria. We thenreviewed each paper to determine whether each met these initialcriteria and the following additional criteria: (1) report on onlyone research project, or more than one project and each wasdescribed in detail, (2) include adequate information to allow forcoding, and (3) describe a completed project. We identified 28articles meeting these criteria, describing 21 research projects.These 21 projects serve as our final sample.

We extracted data about each project to determine: yearof publication, country, author’s primary role (professionalresearchers trained in research and who conduct research astheir profession or community members not trained in researchand who do not conduct research as their primary profession),author-professed action research approach, project team compo-sition, research focus and methods, target population, whetherthe project was student-led, author-described rationale for usingaction research, involvement of professional researchers andcommunity members in key aspects of the project (e.g., initia-tion, selection of questions and instruments, data collection,analysis, dissemination), length of project, whether communitymembers were paid for their work, and author-identified out-comes, challenges, facilitators, and successes. We each abstractedthis information independently and discussed any discrepanciesuntil we reached consensus on all coding decisions. We thenused the abstracted data to thematically code reasons for con-ducting action research and to determine participation in threecore phases of research (development, implementation, anddissemination) and subsequently each project’s level of actionresearch (Balcazar, Taylor, & Kielhofner, 2004; Nicolaidis et al.,2011; Tandon, 1988).

Journal of Policy and Practice in Intellectual Disabilities Volume 11 Number 2 June 2014

E. Stack and K. E. McDonald • Action Research

84

RESULTS

Extent and Nature of Action Research With Adults WithDevelopmental Disabilities

We identified 21 action research projects with adults withdevelopmental disabilities, described in 28 publications (seeTables 1 and 2). Of the 28 publications, the first was published in1996 and 19 (68%) were published in or after 2005. Of the 21projects, eight (38%) occurred in the UK, seven (33%) in theUnited States, three (14%) in Australia, and one (5%) eachin Iceland, New Zealand, and Canada. Seven (33%) of theproject authors describe their research as participatory actionresearch, four (19%) project authors call their research inclusiveresearch, three (14%) project authors indicate their research isemancipatory research, three (14%) project authors refer to theirresearch as participatory research, two (10%) project authorsterm their research collaborative action research, one (5%)project author calls their research collaborative research, and one(5%) team of authors call their research community-basedparticipatory research. Fifteen (71%) of the projects describedworking in collaboration with three or more individuals withdevelopmental disabilities whereas three (14%) of the projectsdescribed working with one or no adults with developmentaldisabilities. Of the 14 projects providing this information, mostprojects reported collaborations lasting 1 year or less (four), or 1to 2 years (six), although two collaborations lasted 3 to 4 years,and another two lasted 4 years or more. Of the 28 publications,23 (82%) were authored by professional researchers. Professionalresearchers and community members jointly authored four(14%) publications. Four (19%) of the 21 projects involvedstudents as the professional researcher. Eight (38%) of the 21projects reported paying community partners for their workon the research team, with two authors noting there were alsotimes when community partners were not paid.

With respect to focal populations, research aims, andmethods, 17 (81%) projects focused on adults with intellectualdisabilities. The other four (19%) involved adults with develop-mental disabilities. All projects generally described research aimsfocused on social issues important to adults with developmentaldisabilities including the homeliness of group homes, transitionto the community, quality of life, self-advocacy, health, socialrelationships, education and employment, support, life histories,and control in decision making. The methods used to addressthese research aims varied. Fourteen projects (67%) used quali-tative methods, including individual interviews, focus groups,oral histories, photovoice, and videos. Six (29%) projectsemployed mixed methods, and only one (5%) project useduniquely quantitative methods. With goals of change related toaction aside, all projects focused on descriptive or observationalresearch.

Authors’ Reasons for Pursuing Action Research

Seventeen (81%) projects describe their motivations forengaging in action research with adults with developmental dis-abilities, at times identifying more than one reason. Twelve(71%) of the projects that mention reasons for pursuing action

research identify inclusion of adults with developmental disabili-ties as a primary motivation. These authors wanted to providegreater opportunities for adults with developmental disabilitiesto share their perspective, experiences, and expertise in influenc-ing or controlling research that affects their lives. Some authorsnoted that this focus on inclusion is more ethical and provides away to break down barriers between professional researchersand community members. Eight (47%) of the projects reportempowerment of adults with developmental disabilities asa reason to pursue action research. These authors see actionresearch as a way to provide greater opportunities for adults withdevelopmental disabilities to gain knowledge and understand-ing. Authors note that as community members learn new skills,build confidence, and experience increased feelings of autonomyand independence, these outcomes may positively influence theirlives more generally. Six (35%) project authors describe con-ducting action research because of the expertise that adults withdevelopmental disabilities have related to their experience livingwith a disability. This expertise can shed light on the study ofphenomenon with which they have personal experience relatedto measurement, interpretation of findings, and recommenda-tions. Their experience can also situate them to be better at datacollection with other adults with developmental disabilities. Six(35%) project authors describe wanting to increase the social rel-evance of their research, or its ability to positively affect the livesof people with disabilities. These authors feel action researchcontributes to research that is more responsive to communityneeds, better able to capture the social reality of people withdevelopmental disabilities, and helps provide concrete resultsthat are more accessible and translatable into meaningful knowl-edge. Finally, four (24%) authors report an interest in conduct-ing action research as a way to connect research with actions thatcan lead to positive change. Author-reported action interestsinclude strengthening the self-advocacy movement, developingmaterials and resources, and creating task forces on communityissues.

Challenges, Facilitators, and Successes

Authors of 16 (76%) of the projects noted challenges experi-enced in carrying out their action research projects. Amongthese authors, 10 (63%) commented on the difficulties theyfaced making the research project accessible and engaging foreveryone. In particular, four (25%) projects noted that dataorganization and analysis was an abstract concept that was chal-lenging for community members to engage in fully while two(13%) projects noted the use of technology rendered the projectless accessible. Accessibility issues were difficult to address forsome because of time (19%) and budget (13%) constraints.Authors new to action research reported problems created bytheir failure to set up formalized decision-making procedures(13%) and differences among group members about what con-stitutes inclusion (6%). Two (13%) projects ran into difficultieswhen dealing with adhering to academic guidelines anddemands, including payment and authorship. Another projectmentioned the trouble they encountered in receiving ethicscommittee approval because of assumptions about the lackof capabilities of people with developmental disabilities,



85

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assumptions they felt were at odds with the goals of actionresearch. Authors also noted experiencing barriers to includingadults with developmental disabilities related to funding forcommunity members (13%), transportation (6%), power imbal-ances (6%), and the increased energy and staff needed (6%).Two (13%) projects found that the close collaboration and rela-tionships built throughout the process made it difficult to endthe projects.

Nineteen (90%) projects identified facilitators that contrib-uted to successful action research. Eight (42%) of these authorsfelt the structures they put in place were beneficial. These struc-tures included allowing or providing community membersmentors or supporters, working with a formal advisory board,and allowing time for discussions. Another eight (42%) projectauthors mentioned valuing decision-making abilities of commu-nity members, building trust, and advancing relationshipsthrough informal time spent together as important components.Similarly, seven (37%) project authors reported the benefits ofusing a variety of strategies to work in ways that are accessible toall project members. Addressing partner characteristics, five(26%) authors noted the importance of professional researchers’self-awareness, openness, and flexibility while four (21%) projectauthors added that community members who already possessedleadership skills and experience or who gained skills and a senseof empowerment during the project allowed for a more fullyinclusive process. Four (21%) projects pointed to the benefits ofcommunity members’ eagerness and feelings of ownership overthe projects, one (5%) project acknowledged the importance ofpaying community members, and two (11%) projects reportedthat having clear roles and focusing on community members’strengths contributed to a project’s success.

Authors of 14 (67%) of the projects provided informationon their evaluation of the success, or lack thereof, of theiraction research projects. Among these authors, some describetheir success as mixed. One project indicated they were success-ful in achieving action research since they were able to involveadults with developmental disabilities in the planning process.One project reported that photovoice was an effective strategyfor engaging adults with developmental disabilities. Three(21%) authors described their success with action researchbased on having good participation in data collection by com-munity members, including community members who wereable to conduct high-quality interviews and make intervieweescomfortable. Four (29%) authors indicated success given thegrowth and learning of community members. Five (36%)authors reported the ownership community members tookover the process as indicators of success. In these instances,community members took on additional work, challenged pro-fessional researchers’ initial plans, described their work as the“best job I have ever done,” and engaged in the project longerthan expected by the professional researcher. Another authorreported the action research was successful because the reportwas as close as possible to participants’ truth, and two (14%)authors noted that the creation of tools and resources weresigns of the projects success. One (7%) author noted positiveintervention outcomes as a sign of success. However, two(14%) authors note that their action research projects were notcompletely or at all inclusive, or were on the lower end of thescale in terms of shared power.

Adherence to Principles of Action Research

Theoretically, action research provides opportunities forcommunity members to learn, creates equal partnershipsfocused on community concerns, and produces social actionsoutcomes. With respect to learning, authors of 14 (67%) projectsreported that community members acquired new skills throughtheir work on their action research project. These skills men-tioned by these authors included learning about research (50%),increased empowerment, confidence, and pride (29%), knowl-edge and awareness of their own and their community’s history(21%), increased advocacy and leadership skills (14%), and theimportance of asking questions when something is not under-stood in order to learn and grow (7%). In some cases, authorsreport that community members are putting these skills to usein new projects and settings.

Regarding equal partnerships, there are three phases toresearch: (1) development (setting the research agenda anddesign), (2) implementation (data collection and analysis), and(3) dissemination (control over use and outcomes of data;Nicolaidis et al., 2011; Tandon, 1988). We coded involvement ofcommunity members in each of these three phases and calcu-lated a sum score of level of action research from no, low,medium, to high. We identified one (5%) project demonstrat-ing no participation of community members, two (10%) proj-ects demonstrating no-low level of action research (bothprojects used member checking with participants), one (5%)project had a low level, and eight (38%) projects exhibited alow-medium level, two of which the authors professed as notbeing as inclusive as they could have been. One (5%) projectreflected a medium level, two (10%) a medium-high level,and six (29%) projects reflected high levels of action research.Projects reflecting higher levels of action research generallyincluded those described by their authors as inclusive research,emancipatory research, or collaborative action research. Con-versely, those author-labeled as participatory action researchand, to a greater extent, those labeled as participatory research,demonstrated lower levels of action research. Perhaps reflectingthese levels of action research, many project teams (71%) notedthe difficulty of developing research partnerships that wereaccessible to community members. Although 19 (90%) authorscommented on the importance of altering their approach to beinclusive, only 14 (67%) of the authors concluded that theircollaboration was fully accessible. Some project authors (24%)reported that it was not clear at times whether everything wasunderstood by all team members. In some cases, authorsreported a lack of interest or disengagement by communitymembers as signs that not all aspects of the work wereaccessible.

With respect to action outcomes, 11 (52%) authors describedproject outcomes that can directly benefit adults with develop-mental disabilities. Six (55%) of these authors reported creatingreports for and presenting findings to service providers, townhall, or advisory groups, four (36%) authors indicated that theirwork fostered self-advocacy, two (18%) authors note that theirwork contributes to the pursuit of full inclusion, and themembers of one project have used their results to contributed topolitical self-interest (9%).



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DISCUSSION

The growing insistence on including people with developmen-tal disabilities in all aspects of community life (Dybwad & Bersani,1996), combined with the rising use of action research approacheswith them, suggests the importance and timeliness of describingand critically evaluating this body of scholarship. For a group longmarginalized, including to some degree in the disability rightsmovement (Shapiro, 1993), we were encouraged to locate 21English-language completed projects describing action researchprojects with adults with developmental disabilities. For the mostpart, these projects were conducted in the UK and the UnitedStates, with individuals with intellectual disabilities, publishedin or after 2005, focus on social issues important to adultswith developmental disabilities, and employ qualitative methodsto address their descriptive and observational research aims.This body of scholarship displays variability in author-namedapproaches to action research with participatory action researchand inclusive research being the most common terms. Authors inthe United States described their work as participatory actionresearch whereas authors in the UK favor emancipatory research,participatory research, or inclusive research.

Like those who have advanced the theory of action research(Cocks & Cockram, 1995; Israel et al., 1998; Walmsley, 2001;Whyte, 1991), authors report pursuing action research withadults with developmental disabilities to foster opportunities toinfluence research, build knowledge, skills, and a sense of effi-cacy, use their expertise to benefit research, conduct socially rel-evant research, and produce beneficial social outcomes. Manyauthors indicate success in achieving at least some of these out-comes; but, it is important to note that these outcomes arelargely focused on process or intermediate outcomes rather thansocial change outcomes that may take more sustained anddiverse efforts to achieve. Additionally, based on participation inkey phases of research (development, implementation, and dis-semination), we found just over one-quarter of the includedprojects exhibited characteristics of participation that reflecthigh levels of action research. These findings are contextualizedby the challenges, facilitators, and successes described byauthors. Reported experiences parallel those discussed in otherscholarship about the theory and practice of action research(Israel et al., 1998), and thus it is not surprising that authors dis-cussed challenges related to full accessibility and inclusion,resource constraints, funding and academy expectations,and power differentials and facilitators such as structuresand supports that bolstered accessibility and shared decisionmaking, building positive, strengths-based relationships, allow-ing adequate time for collaborative work, and having teammembers with appropriate personal characteristics and experi-ences. Project authors discussed their success, or lack thereof, inincluding community members in all aspects of the research,noting many challenges related to inclusion in initiating projects,data analysis and interpretation, and writing. Others describedthe quality of data collection conducted by communitymembers, the growth they saw in community members, and theoutcomes that benefited people with developmental disabilities.

These findings have important implications and leadto pressing recommendations for developmental disabilityresearch. Our findings suggest differential understanding of

and commitment to core definitions and principles of actionresearch. Most notably, many authors fail to fully meet theframeworks and practices outlined by action research scholars(Israel et al., 1998; Whyte, 1991). Instead, over one-half ofauthors use terms for and provide some description to suggesttheir work reflects equal research partnerships but then fail toprovide evidence that adults with developmental disabilitieswere included in key aspects of the research. In some cases, com-munity members’ roles were restricted to serving as data sourcesand having the opportunity to provide feedback on the accuracyand meaning of their individual accounts. These authors blurlines between participatory methods that allow communitymembers to provide first-hand accounts of their views and expe-riences in research (Knox, Mok, & Parmenter, 2000; Paiewonsky,2011) and participatory approaches that involve an equal, mutualsharing over the nature and direction of research (Balcazar et al.,2006). This raises critical questions about authentic power-sharing in research with adults with developmental disabilities,and the potential to foster negative views of or experiences withprofessional researchers in the community (Cocks & Cockram,1995). That is, while these research projects were inclusive ofpersons with developmental disabilities, several did not whollylive up to the goal of transformative change for persons withdevelopmental disabilities. However, such change may be incre-mental and the data sources studied herein may only partiallycapture that change. We thus recommend professional researchersexercise greater responsibility in understanding action researchtheory and its application to research with adults with develop-mental disabilities.

It is important to note that these authors are pioneers. Assuch, it is probable that they will stumble as they seek to applyaction research theory to a new population. Many of theseprojects evidence some levels of action research, while alsodemonstrating qualities (e.g., accounts written by professionalresearchers, community members volunteering their time towork on projects, use of pseudonyms for community members,advisory groups providing input and guidance rather thanshared decision making) that draw into question whether therewas equitable sharing of control. Nonetheless, as Gilbert (2004)notes, “movement is inevitable” (p. 306). To better implementaction research, we recommend a commitment to building ourknowledge of effective strategies and tools for action research withadults with developmental disabilities and continuing to sharethese tools through publications, presentations, Web sites, work-shops, and communities of practice.

Related, this collective scholarship points to the importance ofpersonal characteristics and experiences that may be critical forengaging in action research with adults with developmental dis-abilities. We recommend that professional researchers continue togrow in their belief in the ability of adults with developmental dis-abilities to contribute to research, their commitment to providingaccommodations to enable full inclusion, and their knowledge ofaction research and how to achieve its aims. This includes clarify-ing how community members with disabilities can demonstratepower over and actively influence research (Bricher, 2000). Inmaking this recommendation, we note that some professionalresearchers may need to engage in a degree of “unlearning” abouthow they view and engage adults with developmental disabilities(Allen, Culhane-Pera, Pergament, & Call, 2010; Chambers, 2007);



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others are further along in this journey. We also note one-fifth ofincluded projects were student projects. This demonstrates inter-est among new scholars in action research with persons withdevelopmental disabilities, and reminds research mentors of theneed to attend to adequately supporting those with less researchexperience in these challenging pursuits. Interestingly, students’relative lack of power in their own settings may facilitate powersharing in action research, though their parallel lack of experienceleading research may contribute to greater challenges in executingthe research. We further recommend that action research projectsattend to the development and selection of coresearchers withdevelopmental disabilities. In particular, individual experiences,characteristics, and interest in research, along with attention to thecollective diversity of coresearchers, may contribute to the successof projects. And, we recommend that funding bodies encourageaction research and provide the needed resources to fully includeadults with developmental disabilities. It is noteworthy that coun-tries where government and funding bodies value inclusion ofadults with developmental disabilities and where advocacy move-ments are present engage in action research at greater rates.

With a few exceptions (Bonham et al., 2004; Perry & Felce,2004), our findings and other scholarship on the reportedsuccess of action research, including effects on research qualityand the lives of people with developmental disabilities, arelargely anecdotal and from the perspectives of professionalresearchers. We thus recommend greater attention to building asystematic, thorough, empirical evidence-base for action researchoutcomes inclusive of community member perspectives. This evi-dence base can be used to argue that further investments in andadvancements of action research with adults with developmentaldisabilities is warranted. We also note that much of studiedaction research uses qualitative research. While qualitativeresearch is often an important stepping stone in new areas ofinquiry and may be more accessible to community members, thequalitative paradigm has had limited impact on services andpolicy changes, thereby limiting the potential for transformativechange for people with disabilities (Bricher, 2009). We recom-mend action research projects pursue mixed and quantitativeresearch to answer a broader array of research aims, push frontiersin including community members in diverse forms of inquiry, andbetter legitimize action research with adults with developmentaldisabilities among more diverse research traditions.

In considering the implications of our findings, it is impor-tant to bear in mind its limitations. First, we included in oursample only those articles that explicitly term their research asone of seven approaches collectively called herein actionresearch. It is possible that action research projects are publishedthat fail to describe their research in these terms. Moreover, theseresearch approaches have unique traditions, definitions, values,and practices (e.g., in their emphasis on addressing social orpolitical issues) thereby challenging their evaluation along thesame metric. And we excluded all publications that have not yetcompleted a full research cycle, are not in English, and whichinclude people experiencing other forms of disability. Moreover,although some authors present critical perspectives, it is likelythat action research projects that failed to meet their objectivesare underrepresented. Their inclusion could change the storytold herein. Also, we only reviewed academically oriented prod-ucts written largely by professional researchers. An evaluation of

community-oriented products and descriptions might yieldstrikingly different results. Lastly, we could only consider infor-mation provided by authors in each manuscript; there may beimportant omissions to these records.

The exciting news is that action research with adults withdevelopmental disabilities holds promise for people with develop-mental disabilities, their allies within and outside the researchcommunity, and a more inclusive society. Moreover, many pio-neers are devising ways to achieve equitable research partnershipsand putting research into action to directly benefit people withdisabilities. Despite the challenges to and questions regarding itspossibility, authors studied herein demonstrate that actionresearch with adults with developmental disabilities is beneficialand feasible. We look forward to the continued development ofthis form of inquiry, and advancements in strategies to attainequal, mutual partnerships between adults with developmentaldisabilities and professional researchers as part of the larger questfor social justice. As our field moves forward, we must collectivelyremain vigilant that this promising approach does not becomeanother means of disadvantaging people with developmental dis-abilities, even as it continues to herald its benefits.

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Nothing About Us Without Us: Does Action Research in Developmental Disabilities Research Measure Up?