“A Legitimate Place in the Profession”: Author Reflections on the 2005 Disability Studies Special Issue

Participants

Using purposive sampling, the research team attempted to contact all living authors of articles published in the 2005 special issue, viewing them as experts and established scholars in the intersection of the fields of DS and occupational therapy. Using publicly available email addresses, we sent each author a standard recruitment message explaining the purpose and design of the study.

Data Collection

We conducted 60- to 90-min semistructured individual interviews via phone or in person. The interview guide, developed by the research team, included questions regarding authors’ connections to DS, their vision for occupational therapy related to DS integration, the impact or potential impact of DS and the special issue on occupational therapy, and perspectives on the contemporary integration of DS in occupational therapy. We recorded the interviews with the authors’ permission and then transcribed interviews verbatim for analysis.

Data Analysis

All team members engaged in thematic analysis of the interviews, and each transcript was coded by two coders, including the interviewer. Multiple phases of inductive and deductive thematic analyses resulted in a codebook organized by themes and subthemes, including discussions to reach a consensus (Miller et al., 2019). We shared theme definitions and epitomizing quotes with the interviewees to member check for trustworthiness and truth value (Miller et al., 2019). The team revisited and resolved any discrepancies between the original analysis and author feedback.

Reflexivity

The research team consisted of six occupational therapists with doctoral degrees in DS or currently participating in a DS program. Some team members identify as disabled but, as described in previous work (Heffron et al., 2019), we acknowledge that our orientation in this study was from a primarily nondisabled framework. Most research team members worked as faculty in occupational therapy education programs, and many had interacted with the participating authors in a professional capacity before the study. We recognized that our previous professional experiences and engagement with the authors’ scholarship could influence our analysis of the interview results. We reflected on these potential biases through frequent group debriefing throughout the study and took measures such as using an interview guide and multiple coders per interview to account for subjectivity.

Theme 1: Exposure to Disability and Disability Studies

Authors described both personal and professional experiences that led to their exposure to DS concepts and that proved to be instrumental in shaping their research and clinical interests. These experiences provided vocabulary and context for the authors’ lived experiences of disability. One author described their experience with their emerging disability identity as follows:

Another author detailed seeking out answers because of a family member’s negative personal experiences with medical professionals, leading them to seek out DS:

Other authors discussed how their initial exposure to DS provided them with explanations about disability that they had been grappling with in their daily lives or their work as occupational therapy practitioners.

Several authors were involved in fields complementary to occupational therapy or worked in academic settings in which DS was available as an area of study. They described collegial interactions with their peers or mentors in DS programs and how these interactions introduced them to DS and engaged them in a greater critical understanding of disability that occupational therapy did not provide:

All of the authors said that their initial exposure led to further exploration and engagement in this field. Specifically, they talked about exposure to the disability rights movement and witnessing the impact of specific policies such as the Americans With Disabilities Act of 1990 (Pub. L. 101-336), and they described learning about theoretical frameworks such as the Social Model of Disability and critical theory. Authors described these experiences as transformative because they challenged their assumptions and preconceived notions of their previous scholarly or clinical work, including recognition of the power dynamics in their work and potential allyship to disability communities. This exposure to DS was a “disorienting dilemma” that influenced their career trajectory as a practitioner, scholar, or researcher.

Theme 2: Impact of the Special Issue on Occupational Therapy

The authors identified many ways in which their single articles and the compilation of articles in the special issue as a whole influenced them as scholars and the field of occupational therapy more broadly. They discussed the impact of the special issue on discourse within and outside of occupational therapy concerning understandings of disability at the time of publication and in contemporary thought, including dialogue with disability communities and discourse around theoretical frameworks.

On a personal level, writing these articles solidified shifts in authors’ perceptions of disability, such as highlighting positive views of disability identity; valuing collaboration with disability communities in scholarship; and shifting understandings of disability from narrow, impairment-based perspectives to more nuanced and complex frameworks. From a professional perspective, several authors noted the value of publication in this issue in the high volume of citations in U.S.-based and international research and across occupational therapy and DS journals. Beyond citations, authors also saw the special issue as highlighting the intersection of the two fields, particularly the increased conversation around the relevance of DS within occupational therapy. As one author commented,

Authors described a particular impact of the issue on theory development and scholarship, particularly with respect to the Model of Human Occupation (Kielhofner, 2008) and the International Classification of Functioning, Disability and Health (ICF; World Health Organization, 2001). Authors also reflected on the impact of articles that used the Social Model of Disability and other DS frames of reference, in particular noting connections to the development of occupational therapy models and theory in the field of occupational science.

Authors noted the broader and longer lasting legacy of the issue. As one author described,

However, some authors noted that the impact of the special issue was not as extensive as they had anticipated:

Theme 3: Changes Observed in Occupational Therapy Beyond the Special Issue

Although not specifically linked to the DS special issue, authors noted related shifts informed by DS in the field of occupational therapy since the special issue’s publication. These included shifts in intervention focus and frames of references, such as moving away from impairment-focused models and addressing the environment or community accessibility. Authors felt this environmental perspective in practice has become more ingrained and “common sense.” They also noted shifts within occupational therapy to focus on population health and health disparities and emerging practice areas, such as primary care. One author spoke to revisions made to the Occupational Therapy Practice Framework: Domain and Process (4th ed.; AOTA, 2020), commenting:

Again, authors identified that despite anticipating significant change in the field as a result of the special issue, these shifts occurred much more slowly than expected. They specifically highlighted that knowledge translation has grown and expanded with new technologies for information dissemination, but when it comes to incorporating knowledge from the DS field, one author stated, “We might talk the talk, but I don’t think we walk the walk yet” (Author 6). Another commented that changes are more subtle or obscured by the use of alternative language; topics relevant to DS perspectives are often included in occupational therapy arenas, but the actual DS terms are not often used. This author noted that DS “is not in [practitioners’] consciousness” (Author 5).

Theme 4: Challenges Integrating Disability Studies Into Occupational Therapy

Authors described a variety of barriers to fully achieving the potential benefits from increased exposure to DS within the field of occupational therapy. They acknowledged broad professional challenges within the field, including a lack of awareness of and commitment to DS concepts, as well as concerns about not attending to DS critiques related to professional issues, such as the frequent failure to consider disability in diversity and inclusion initiatives. For example, 1 author noted that occupational therapy as a whole has not established true partnerships with the disability community, nor has it fully embraced the environmental influences on health and participation: “We should be hand in hand with persons with disabilities, to sort of embrace the ICF and think of different ways we can be creative. But, we, we’re still stuck in that mud” (Author 7).

Related to practice, authors spoke about various challenges to integrating DS across a variety of settings. They noted the rigid practice models often experienced in hospitals or clinics with reimbursement, funding, and documentation driving practice rather than responsiveness to client or community experience. One author described,

Challenges related to practice were often connected with occupational therapy education challenges, with authors highlighting the disconnect between curricular content and practice realities so that even if DS content is included in education, it is not reinforced for students in fieldwork or after graduation. They identified a conundrum: Although occupational therapy doctorate curricula have more room for DS-aligned content related to systems-level practice and social justice, jobs that include these elements are often not available to students as they begin their careers:

Authors, many of whom serve as faculty in occupational therapy programs, also described feeling pressure to leave politics out of their lectures, despite seeing the political connections to service provision and other topics, such as social determinants of health:

They also noted the privileged backgrounds of many occupational therapy students and described students’ hesitation to be critical of or reflective about educational material or methods and their positionality. One author described how students focus on “helping people” without interrogating the foundations of the profession using a social justice or systemic lens. This author further elaborated on the related shortcomings of current approaches to teaching disability and culture:

In addition, several authors described difficulties balancing the infusion of DS concepts and perspectives to meet curriculum standards with preparing students to pass certification exams and develop the technical skills required for the profession.

Authors discussed challenges related to research and scholarship, including who is included and excluded. They spoke to a troubling reality of academic discourse, citing examples of scholars ostracized for publishing critical viewpoints within occupational therapy, other health and rehabilitation fields, and even DS. Authors also described how their DS-aligned research was often not legitimized in the academy; one author described receiving questions such as “Why is this important?” or “Why would students need to know this stuff?” from fellow educators when discussing research on disabled consumer–led access audits (Author 7). Authors identified broader systemic barriers, including a lack of large sustainable funding allocation for DS-informed research and excessive teaching workloads for many faculty, limiting time for scholarship.

Authors pointed to a variety of other structural barriers related to politics, social structures, and cultural attitudes, noting that empathy toward people with disabilities cannot in and of itself bring about change. They identified factors such as capitalistic societies that place high importance on people’s ability to contribute to the economy and attitudes that view disability as an individual issue as significant barriers to achieving disability rights. In occupational therapy specifically, some commented that practice continues to align with biomedical approaches rather than with disability rights approaches. One author stated,

Finally, several authors discussed challenges surrounding theory, including the translation of DS theories and frames of reference into occupational therapy practice, research, and education. Authors spoke to the tension between medicalized and social models of disability within the profession. One author commented that despite valuing DS perspectives in education, “I think we get so caught up in the medical model of things in order to make . . . good entry-level practitioners. I see it in my own institution” (Author 1). Another author used the metaphor of “swimming against the stream” (Author 6) to describe how it feels to push for emphasis on DS theory in a profession that remains medicalized in many ways.

Theme 5: Disability Studies–Informed Recommendations for Occupational Therapy

Practice-based suggestions on what the field of occupational therapy could improve on to reflect DS tenets included interprofessional collaboration, especially that targeted toward working to advance community- and environment-oriented practice areas, including reimbursement pathways. As 1 author noted, there was an underlying call to the profession that attending to these practice concerns was critical to the profession’s future, stating, “We just can’t afford anymore to be one on one with patients and doing outpatient therapy” (Author 7).

Authors viewed the incorporation of DS as a way to illustrate that the distinct value of occupational therapy lies in the field’s unique perspectives on participation in chosen life activities, recognizing this corresponds naturally with a DS perspective. One author commented, “It has always been person–environment related to each other. . . . It’s never only one of them; it’s always both of them” (Author 10). The participating authors also shared perspectives on practical ways practitioners could illustrate the distinct value of occupational therapy to expand services and better address the social barriers that prohibit participation. For example, authors reflected on how efforts to facilitate community integration and accessibility versus institutionalization, aligning with the disability rights movement, should be a natural part of interventions. One author commented, “I don’t think that everyone is going to be an activist or a scholar about DS, but I do think that practitioners need to be aware of the basic resources that are available in their community for people” (Author 2).

Authors saw opportunities for practitioners to partner with the disability community and become leaders in their own communities of practice to encourage others. They emphasized that by continuing along a path focusing on individualized restorative approaches: “We do ourselves a professional disservice if we just go along to get along and to kind of follow along medicine and try and fix people” (Author 1). However, authors recognized that these practice-based recommendations would occur not spontaneously but only in response to personal and institutional initiatives to shift from individualized to structural and broadly contextual understandings of how occupational therapy services are delivered and experienced.

The authors also provided recommendations for occupational therapy education, seeing many opportunities to incorporate DS content within curricula, such as broad nonmedicalized views of disability, the lived experience of disability, and community-based services. In particular, participating authors saw entry-level and postprofessional occupational therapy doctoral education and the capstone experience and project as a promising opportunity to engage in undeveloped or unexplored practice settings.

Recommendations included ways to incorporate DS concepts in research and scholarship with calls for increased DS and disability community representation in all areas, including grants and funding mechanisms:

Moreover, there was a call for the profession to enhance the value placed on nontraditional research methodologies that collaborate with and center marginalized populations’ place in the profession: “I would like to see the guidelines for publications . . . allow more critically reflective pieces. . . . They have that very narrow notion of science, that science is quantitative” (Author 11). This author also discussed the importance of collaborating with activists in scholarship, commenting, “If you are not directly engaged with activists and giving credit for theories like disability justice, which are created by activism, not academics, then what you are doing isn’t critical theory. It’s appropriation” (Author 11).

The authors doing research steeped in tenets of DS made specific recommendations for increasing DS visibility through innovative methods of translating this research into clinical practice as well as distributing it widely in a way that can produce change at the community level. One author commented,

The authors acknowledged the importance of continued use of DS-informed theory to guide occupational therapy practice, education, and research but highlighted the importance of critically examining theoretical frameworks to avoid bypassing potential issues in use. Authors noted the value of incorporating layered and multiple perspectives into theory but emphasized the importance of addressing biases, such as ableism, that may be present in theoretical frameworks. They suggested drawing from multiple frameworks and avoiding reliance on one school of thought as a sole provider of knowledge.