Abstract
Historically, the examination of disability has been the purview of medical and psychological researchers and practitioners whose shared goals have been to diagnose and reduce people’s physical, mental, and behavioral abnormalities (Oliver, 1990). Given their role as gatekeeper between “normalcy” and “pathology,” health care professionals have played a major role in influencing how disability is represented and approached in society. Originating in the 1980s, the international field of disability studies (DS) offers critical and alternative frameworks for understanding disability at the intersection of humanities, science, and social science disciplines as well as activism, artistic, and policy arenas (Society for Disability Studies [SDS], 2016). One such framework is the social model of disability (Oliver, 1990), which identifies societal oppression, rather than individual medical or psychological “deficit,” as the cause of disability. By using a social model perspective, DS emphasizes outcomes related to advocacy, empowerment, and addressing systemic barriers as opposed to dominant medically oriented, curative rehabilitation frameworks (Linton, 1998; SDS, 2016). Although the social model is not intended to explain all facets of the disability experience, it provides a lens for examining how disabled people 1 influence and are influenced by their environments (Law, 1991).
Occupational therapy has grappled with integrating DS contributions for more than 25 yr, beginning with Law’s (1991) article about disabling environments, classification of individuals based on norms, disability as deviance, and unequal power dynamics between clients and clinicians, urging occupational therapy practitioners to “achieve equity through critique and change” (p. 176). In 2005, a special issue of the American Journal of Occupational Therapy (AJOT) was dedicated to DS. In that issue, Kielhofner (2005) advocated for a “rethinking” of disability within the profession and the application of concepts such as disability identity, social oppression, reflexivity, advocacy, and client and community empowerment. Other researchers explored practical ways of incorporating DS into occupational therapy education through experiences that facilitate student learning outside a clinical context, thus promoting an expanded perception of disabled people as community members and leaders (Block et al., 2005).
Since the publication of the AJOT special issue, new theoretical models and American Occupational Therapy Association (AOTA) official documents incorporating DS tenets have brought further attention to issues of empowerment and equitable access within the scope of occupational therapy (Kish, 2015; Whalley Hammell & Iwama, 2012). For example, the Occupational Therapy Practice Framework: Domain and Process (3rd ed.; OTPF–3; AOTA, 2014) identifies self-advocacy as an occupational therapy intervention and describes independence as satisfaction with performance, regardless of type or degree of assistance received. However, this knowledge has yet to be fully translated into practice. There is limited research on how clinicians understand and approach empowerment, advocacy, and social and systemic barriers consistent with DS principles and the social model of disability. If occupational therapy is to successfully incorporate DS perspectives into practice, practical considerations for knowledge acquisition and translation should align with practitioners’ identified experiences and concerns. Thus, the objective of this study was to explore occupational therapy practitioners’ understandings of and experiences with meaningful integration of DS concepts into daily occupational therapy practice.
Method
We used a qualitative research design to explore occupational therapy practitioners’ perspectives on integrating DS principles into clinical practice. Focus groups (FGs) were conducted in November 2015 at a state occupational therapy conference after a 60-min presentation about DS and the social model of disability. Four disability community members served as copresenters and disability advisors.
Participant Selection and Recruitment
Conference workshop attendees received a study recruitment flyer as they entered to attend the presentation. Occupational therapy practitioners were invited to participate in the study; students were excluded because the study was focused on clinical, rather than educational, experiences. After the presentation, 27 eligible and interested participants gave verbal consent. Table 1 presents participant demographics. All research activities were approved by the institutional review board of the participating institution.
Participant Demographics (N = 27)
Note. M = mean; SD = standard deviation.
Some participants chose more than one response.
Data Collection
Three 30-min FGs of 8–10 participants were conducted simultaneously by three research team members to explore barriers and supports to integrating DS tenets into occupational therapy practice. Semistructured FG questions and follow-up prompts were created in advance by the research team. The following primary research questions were addressed in the FGs:
What do occupational therapy practitioners think the profession is doing well to integrate DS principles/priorities into practice?
What barriers do occupational therapy practitioners experience to integrating DS principles into practice?
In what ways do occupational therapy practitioners think the profession can better integrate DS principles into practice?
FGs were audiorecorded and transcribed verbatim by the research team. In addition, FG facilitators developed field notes immediately after FG facilitation to capture the atmosphere within and across groups. Students who were excluded and practitioners who declined to participate had a separate, unrecorded discussion.
Data Analysis
Five researchers analyzed the data using the comments feature in Microsoft Word (Microsoft Corp., Redmond, WA). Transcripts were coded using a constant comparative grounded-theory approach (Glaser & Strauss, 2009) in which data were systematically related to other data and codes to determine relationships and develop theoretical insights on the topic. Analysis relied on a team coding approach using dialogical intersubjectivity (discourse related to researcher interpretations), intensive group discussion, and simple group consensus (Saldaña, 2016). Multiple rounds of collective disassembly and reassembly of data included initial coding, refining codes, discussing and interpreting emerging patterns and themes, and identifying epitomizing quotations for each theme. Superordinate themes were shared with the disability advisory group.
Research Team and Reflexivity
Critical reflection was used throughout the study to ensure qualitative rigor (Yin, 2016). As a team of six female occupational therapists enrolled as doctoral students in a DS program, we came to the research with assumptions based on our own experiences in practice. As insiders to the profession of occupational therapy, we acknowledged the risk of speculating analogous experiences when exploring other occupational therapists’ perspectives. Although one team member also identifies as a disabled person, the team was conscious that our ways of thinking were largely informed by nondisabled perspectives. Researchers had existing professional relationships with some FG participants, and one researcher held a leadership role in the community at the time of the research, which potentially biased participant responses. The team debriefed on these biases during research design and data collection and returned to them frequently during data analysis. Efforts such as constant reflection and extended group discussion were also made to analyze the data from an objective perspective, accounting for our own subjectivity.
Results
Four major themes emerged from the data: (1) convergences and divergences of occupational therapy and DS, (2) perceptions of disability influencing practice, (3) navigating systemic barriers, and (4) incorporation of DS-aligned intervention strategies into practice.
Theme 1: Convergences and Divergences of Occupational Therapy and Disability Studies
Participants discussed occupational therapy philosophies that converge with and diverge from DS principles, in both theory and practice. For example, practitioners recognized a responsibility to assess the influence of the environment:
It’s our role to educate [clients about environmental barriers they’re] going to encounter when [they] leave [the] bubble world in our rehab unit. [We need to] start getting them thinking on that route so they can at least say, “Gee, wait, I’ve got to think about, or I need to look at, or I need to make that phone call to ask” rather than letting them get there and encounter that [on their own]. (FG 2, Participant 6)
This emphasis on occupational engagement versus impairment reduction highlights the infusion of empowerment and self-advocacy into daily practice.
Many participants held client-centeredness as the gold standard for intervention design and described broadening interventions to include clients’ social participation concerns. Others discussed the power of occupation-based models and client-centered assessment tools, such as the Canadian Occupational Performance Measure (Law et al., 2014), in helping practitioners and clients identify potential participation barriers outside of the rehabilitation setting. However, 1 participant, an occupational therapy educator, pointed out how narrowly the concept of client-centeredness can be interpreted:
They [students] understand the term client-centeredness , but they don’t understand the context of the society, so they are still focusing on choice of ADLs or choice of things we need to work on so I can fix [clients] essentially, instead of, “Well okay, let’s look at the bigger picture.” (FG 1, Participant 4)
Another participant reflected on client-centeredness through the lens of providing a service while simultaneously acknowledging clients’ experiential knowledge and power:
When I walk into that room [I’m] like, “You [the client] are the expert on you and you can teach me some things about being in a wheelchair. What do you need from me [as an occupational therapist]?” And hopefully that’s empowering. . . . I don’t want to be condescending, like, “Look at me treating you, like you [the client] are the center of care.” (FG 3, Participant 6)
A few participants noted that practitioners rarely document and sometimes fail to acknowledge their own efforts regarding client self-advocacy:
I’ve never thought about the fact that I encourage [patients] to advocate for themselves. For instance, we have people that don’t want to drink water because then they will have to go the bathroom and call for a nurse, and they don’t want to bug the nurse. I do a lot of education to inform patients that these people are working to help you, you are the boss, you direct them as to what you need. But I’ve never included that as education in my documentation. (FG 3, Participant 6)
Similarly, some participants reported that occupational therapy practitioners actively support clients’ autonomy, self-advocacy, and self-determination but reported believing what they are doing is insufficient and that they can, and should, do better as professionals.
Theme 2: Perceptions of Disability Influencing Practice
According to participants, perceptions of disability play a significant role in occupational therapy practice. The medical model belief that disability lies within the individual was identified as a barrier to participation-level practice and was reported to be held by clients, practitioners, and the field of rehabilitation itself. One participant described the “fix me” attitude often held by clients entering occupational therapy with new impairments or injuries:
Because of the idea that disability is something negative, we have patients who have new injuries who are focused on “Fix me. I don't want to be this way. My life is over because I have this injury.” (FG 1, Participant 4)
Clients’ internalization of societal views about disability can affect their self-perceptions and goals, resulting in them seeking, and practitioners implementing, only impairment- and function-focused interventions. Similarly, a practitioner’s medicalized version of a client’s disability experience, coupled with the “culture that we were trained in [that clients should not question health care professionals]” (FG 3, Participant 4), can lead clients—often new to disability—to medicalize disability themselves.
Several participants considered how occupational therapy educational programs might encourage more DS-aligned perspectives of disability. One participant provided insight into how the social model of disability is embedded in education and practice in the United Kingdom:
My training was very much embedded in DS. Half of the curriculum was in mental health. . . . The social model of disability is an integral model that the majority of therapists in the UK use if you’re working in mental health, of which 50% of therapists work in mental health. So it’s quite a difference to the U.S. (FG 2, Participant 2)
Other participants described opportunities for students and practitioners to gain exposure to nonmedicalized perspectives of disability, such as by taking courses in DS when available. Still others discussed opportunities for occupational therapy faculty members to include critical discussions about disability and professional values, such as independence versus interdependence, in their courses:
I have a discussion with [students] about the fact that not everybody wants to be independent, and it kind of confused them, like, “What do you mean? Of course everybody does.” And we talked about the fact that it is a societal value here in the U.S., but it might not be a value for the people we are working with. (FG 1, Participant 4)
Similarly, a few participants reported that the occupational therapy profession can modify its normalcy discourse:
I think the definition of normal has to change at times. It’s not just the hip fracture that’s going to heal and they’re going to be okay—it’s the head injuries or the spinal cords. It’s normal. It’s not abnormal, it’s not different, it’s not handicapped—it’s just a new normal. (FG 2, Participant 3)
As evidenced here, participants across FGs identified a variety of areas in which occupational therapy might integrate DS principles into professional education and practice. Many participants discussed the importance of learning from disability rights organizations and disability community members within the entry-level occupational therapy curriculum and as part of continuing education (CE). For example, 1 participant believed that it is important to
have broader discussions with those affected. Because I think it’s difficult for us to go, “Well geez, if I were in those shoes, this is what I would want.” But we are not in those shoes. And to have more open dialogue with independent living centers and some of those organizations and populations, to what are their needs, so that we can be better advocates. (FG 2, Participant 8)
Attending and participating in CE workshops, like the one conducted as part of this research study, can also be useful in changing perspectives about disability:
This was good for me to hear from [disabled co-presenters] that it’s more meaningful for them to decide what they want to do. I was stuck in the middle—they want to work on this, but society says they shouldn’t be doing this, so it’s an eye opener for me. (FG 1, Participant 4)
Although participants generally agreed that clients, practitioners, and entire professions can hold medicalized views about disability, they also recognized possibilities for improvement. According to participants, identifying and working to improve personal and professional perceptions about disability can help occupational therapy better align itself with DS perspectives and priorities.
Theme 3: Navigating Systemic Barriers
Participants identified various systemic barriers that make them feel conflicted or as though their “back is against a wall” (FG 1, Participant 1) as an occupational therapy practitioner actively trying to incorporate DS tenets into practice. For example, several participants identified reimbursement and insurance as dictating how practitioners can intervene with clients. The homebound requirement for reimbursement in home health came up as one of these systemic barriers:
We can’t do adapted shopping; we can only talk about it because if [clients] are shopping with me, it means they are not homebound. So even if it is to the [grocery store], we can’t address [their goals] in a functional way to assess social barriers. (FG 1, Participant 4)
An inpatient rehabilitation occupational therapy practitioner reported a similar obstacle to participation-focused practice:
We’re not allowed to take [clients] out. There might be some discussion like, “Here is a list of bus services around” or something like that, but that might be the extent of what I’ve really had experience [with] or seen. (FG 1, Participant 1)
Referring to documentation challenges, another participant described the difficulty that arises as a result of
an electronic system that forces us to fill in little blanks that may not suit what our treatment is. I think it’s harder when you are . . . addressing psychosocial concerns that lie around . . . empowerment or engagement. It becomes harder to document (FG 3, Participant 2).
For other participants, the prevalent use of outcome measures that focus on independence as doing on one’s own emerged as a barrier to client-centered practice:
We have a lot of back surgery people who don’t want ADL equipment. They have no interest—they’re going to have their spouse do it for the short time they’re going to need it. But then we can’t give them that [modified] independent score on the FIM™. [The challenge is] how to balance . . . the conflict between the health care system and what the client-centered needs are. (FG 2, Participant 3)
Whether discussing reimbursement and documentation regulations or outcome measures that conflict with philosophical underpinnings of occupational therapy, participants seemed eager to share barriers that they have experienced to implementing participation- and empowerment-focused interventions. Moreover, across FGs, participants identified several “underground practice” (Mattingly, 1998) strategies for navigating systemic barriers. One such strategy was to work around reimbursement restrictions by using existing, related codes to bill for participation interventions:
My catch-all is billing “therapeutic activity.” I can’t take people out into the community, but I can take them off the floor. So I get them down to the gift shop to practice buying stuff and carry[ing] a bag—I call this a “navigation pathfinding task.” Or I do it a little more standardized and use the Multiple Errands Test as my framework. So I can say, “This is skilled from what you want to see,” but I’ll include problem solving, community mobility, distances, and surfaces they’ve navigated over. (FG 3, Participant 6)
Another participant reported that exposure to participation-focused interventions as a student helped them navigate systemic barriers as a practitioner:
I think having a comfort level and knowing that when you document what you’re doing, what you’re doing is occupational therapy and it’s not social work, is important. Treatment is problem solving, and it’s okay that it’s not upper extremity exercises, but you’re having a conversation about attitudes and other invisible barriers and it’s important. But it takes education in fieldwork and it takes exposure to these other barriers. (FG 3, Participant 2)
Rather than accepting systemic barriers as unavoidable, these participants offered strategies to circumvent or navigate these barriers to engage in a more DS-informed practice.
Theme 4: Incorporation of Disability Studies–Aligned Intervention Strategies Into Practice
After the presentation, many participants reported awareness of how integrating DS principles into occupational therapy can help meet clients’ needs and expose them to a fuller range of possibilities for life with disability. However, several participants reported that a limited knowledge base and network of support hinders this integration. For example, 1 participant noted gaps in knowledge translation of DS research and theory into occupational therapy education and practice:
I don’t think [students learn to address broad-level barriers.] I’m sure other [educational] programs like ours are introducing some of these concepts. I hope. But as far as the OTs I see out practicing, I really don’t [see DS principles integrated]. (FG 1, Participant 2)
Another participant described limited knowledge, time, and resources as barriers that practitioners experience to addressing occupational injustices and participation restrictions that they see in the community:
Sometimes we don’t even know who to write to or where to go. We can go to the department of disabilities [or] we can talk to the companies that we encounter that have deficiencies. But sometimes we’re not sure because we’re in the middle of our own clinical work. We’re not in academia, so we don’t know what the resources might be or who to address our concerns to. (FG 2, Participant 6)
Although participants acknowledged gaps in professional education and practitioner knowledge, they identified some DS-aligned approaches that targeted both individual professional relationships and systems within occupational therapy. For example, participants identified communicating with colleagues, educating each other, and having difficult conversations as key to effecting change within occupational therapy practice:
Sometimes we just have to be there for each other as colleagues, and say, “You know, maybe they should be working on something else.” We shouldn’t be afraid to address each other and rethink our strategy. I don’t think we should be afraid to approach our colleagues if they’re moving in the wrong direction with a patient. (FG 2, Participant 4)
Participants also identified particular interventions, such as self-management approaches, that might help clients reach their participation-focused goals:
It’s not uncommon for me to write goals that encourage [clients] to explore options for social integration: try to get back in touch with close friends, build new relationships, look at other alternatives to participate in the community. I always build that into treatment planning and we touch base on that every session or two—“What are you doing? What steps did you take?”—to increase their awareness that they actually have a lot more power than they think they have. (FG 1, Participant 2)
Participants described peer support as another useful intervention to supplement professional knowledge with the experiential knowledge of disabled people, in line with DS tenets:
Occupational therapy can play a role but not the only role. We have the background to grade activities, to analyze, to focus on participation in occupation. But we don’t know exactly [what it is like to live with disability]. So I think sometimes we also could go the other way . . . maybe partnering [with peer mentors]. (FG 1, Participant 4)
Across FGs, participants described the importance of addressing societal-level barriers and using community-based resources to support participation for their clients but acknowledged a lack of awareness about and difficulty accessing opportunities to implement interventions that are aligned with these values. Still, through the competing demands and limitations of their practice settings, participants were able to identify strategies and interventions that could be used to translate DS knowledge and approaches into occupational therapy practice.
Discussion
This study explored occupational therapy practitioners’ perceptions about integrating DS principles into practice. Identified themes included similarities and gaps between the fields of occupational therapy and DS, influence of perceptions of disability on service delivery, clinician navigation of systemic barriers, and incorporation of DS-aligned intervention strategies into practice. Findings support past research exploring the integration of DS in occupational therapy education (Block et al., 2005; Magasi, 2008) and extend the conversation to pragmatic supports and challenges from clinicians’ perspectives.
Occupational therapy and DS share many common philosophies, thereby positioning occupational therapy as a field that might easily integrate DS tenets to more fully meet clients’ needs. The OTPF–3 appears to diverge from a focus on impairment and function to attend more specifically to participation and engagement. Similarly, multiple occupational therapy models direct practitioners to attend to the intersection of client, occupation, and environment and to design interventions to overcome environments that restrict participation in meaningful occupation (Wong & Fisher, 2015). However, despite language that suggests the profession is moving away from medical model approaches, in practice, occupational therapy practitioners are often positioned to target and measure outcomes based on medicalized definitions of independence and “normal” functioning. Speaking to the gap between occupational therapy philosophy and practice, participants pointed out that DS-aligned concepts in the OTPF–3 may not easily translate into practice, such as implementing client-centeredness within a broader health care system that functions predominantly within a medical model of practice.
Phelan (2011) called for critical reflection on what practitioners claim as client-centeredness when they fail to look at the broader contextual issues that present barriers to clients’ occupational participation. Because many clients seek occupational therapy during times of impairment onset or exacerbation, it is important for occupational therapy practitioners to think critically (Phelan, 2011) about their role in shaping how clients perceive life with disability. If occupational therapy is to remain true to its philosophy of participation in diverse environments and contexts, it would behoove practitioners to integrate a macro-level perspective of client-centeredness to facilitate client navigation of organizational, systemic, and societal barriers (Fleming-Castaldy, 2015). This reconceptualization of what it means to be client-centered—which includes greater attention to broad sociopolitical issues faced by disabled people as a population—is an exercise in reflexivity and sharing power (Phelan, 2011). This shift away from the medicalization of disability can be facilitated if educators and practitioners extend their understanding of disability by working with disabled people outside the clinical setting and learning from them as leaders, educators, and mentors (Shakespeare & Kleine, 2013).
Participants identified multiple barriers to incorporating DS concepts into clinical practice, with the most overarching being perceptions about what constitutes and creates disability. This finding supplements existing literature on how the medical model shapes societal perceptions about disabled people (Linton, 1998). Locating disability within a person and declaring that the person is in need of cure or treatment turn what might be considered a normal life event into a medical problem requiring intervention and regulation (Nettleton, 2013). This process of medicalization shifts the production of knowledge about disability from the person to the provider and gradually positions the medical community as the social authority over defining and responding to disability. Critiques from DS and disability communities expose rehabilitation intervention approaches and knowledge production as originating from a medical model perspective (Gill et al., 2016).
Participants also reported system-level barriers that may contribute to the gap between professional philosophy and clinical practice. The challenge of navigating systemic and administrative barriers has been discussed in some depth in the literature (Fleming-Castaldy, 2015; Mattingly, 1998). In the current study, participants experienced significant barriers to community-based intervention despite acknowledging its benefits and perceived the rehabilitation reimbursement climate as constraining their ability to serve clients’ best interests (Buntin et al., 2009). This finding echoes the dilemma exposed by Gupta and Taff (2015) in which clients’ insurance plans, rather than their needs, dictate clinical decision making.
Participants identified numerous ways that DS principles can be applied in practice to navigate systemic barriers. They found that educational experiences, community resources, and professional dialogue can be major supports to inform interventions. However, they conceded that without practitioner exposure to the social and cultural causes of disability, interventions will likely continue to focus on remediating functional impairment.
Participant recommendations echoed ideas identified by Gill and colleagues (2016) and Heffron (2016), who recommended training providers in “disability literacy,” which includes educating them about disability models, rights, and culture. Magasi (2008) suggested infusing DS concepts into occupational therapy education and practice to “develop informed practitioners equipped to integrate this information and serve as change agents to the profession” (Magasi et al., 2014, Slide 54). Part of the change includes shifting practice away from individualistic interventions to those that support participatory citizenship (Fransen et al., 2015), such as including disabled experts in interventions, as practitioners, and in political activism (Gill et al., 2016). Inclusion of social model perspectives, knowledge of macro-level systemic obstacles, and a social justice lens in entry-level occupational therapy educational standards, CE, and professional practice standards can expand practitioners’ understanding of participation barriers while providing them with practical interventions (Fleming-Castaldy, 2015).
This study has several limitations. FGs were held at a state occupational therapy conference after an educational session on DS and disability allyship, so participants and results may not be representative of practitioners’ perspectives nationally. Participants’ presence at the session suggests they were likely interested in or informed on the topic. Researchers were unable to hold member checking sessions because contacting participants was not feasible; however, findings were presented to the community at the same conference the following year.
Despite limitations, findings from this study suggest an emerging community of practice of occupational therapy practitioners with an understanding and critical analysis of the benefits of implementing DS concepts into practice. Estabrooks et al. (2006) explained that a community of practice evolves when “providers begin to reject acting in prescribed ways and instead interact creatively with colleagues using the tools and resources at hand” (p. 32) to change practice. Participants’ exposure to the social model of disability and lived experiences of disabling environments during this study appear to be a catalyst to recognizing and creatively incorporating DS concepts into practice despite barriers that might inhibit this approach.
Implications for Occupational Therapy Practice
Occupational therapy researchers, educators, and practitioners are increasingly acknowledging the value of integrating DS perspectives into the profession (Magasi, 2008). Findings from this study have the following implications for occupational therapy practice in supporting further translation of DS knowledge into practice:
Practitioners can engage in critical, reflexive dialogue to align with self-identified needs of disability communities and can advocate in partnership with them on shared issues.
Researchers can prioritize validation of the efficacy of interventions targeting social and societal barriers to participation and other priorities identified by disability communities.
Occupational therapy educational programs can integrate DS tenets into their curricula and can partner with community-based fieldwork sites that address sociocultural barriers to participation.
Educational institutions can facilitate outreach, CE opportunities, and access to resources for occupational therapy practitioners to educate themselves, their clients, and their colleagues.
The profession can recruit and support qualified disabled people to maintain leadership roles such as practitioner, tenure-track educator, researcher, presenter, and peer mentor.
Occupational therapy can further emphasize disability in discussions and efforts related to nondiscrimination, multiculturalism, diversity, and inclusion.
Footnotes
Acknowledgments
We gratefully acknowledge Justin Cooper, Jennifer Thomas, Nicholas Fonner, Brian Heyburn, and Jonathan Bartholomy, who were on-film and in-person disability community panelists during the 2015 conference presentation on which this research is based and who copresented the 2016 AOTA workshop with us. We thank Lisa Mahaffey for her role in designing and implementing the FGs and both conference presentations. We also acknowledge Elizabeth Harrison and Kimberly The for feedback that greatly improved the quality of this article as well as Susan Magasi for her faculty sponsorship and support of this research. This participatory research project was a community endeavor and would not be possible without the contributions of each member of our team.
The authors have used identity-first language (e.g., disabled people) throughout this article to adhere to the tenets of the social model of disability (a major model in the field of disability studies).