Abstract
Throughout the course of their careers, occupational therapy practitioners will encounter many ethical dilemmas as a part of service provision to disabled people. This article illustrates how disability ethics can strengthen the application of the Occupational Therapy Code of Ethics in practice. To maintain the integrity of the occupational therapy profession, it is critical that practitioners integrate concepts of disability ethics into the profession so their practice will promote environments in which disabled people will flourish.
This article connects AOTA’s Occupational Therapy Code of Ethics with disability ethics using a case-based example to illustrate how disability ethics can enhance practitioner reasoning and provision of care.
As evidenced by the establishment of the American Occupational Therapy Association’s (AOTA’s) Principles of Occupational Therapy Ethics, adopted in 1977, the profession has been committed to the provision of responsible and appropriate services to maximize clients’ ability to “function fully within [their] total environment” (AOTA, 1980, p. 896). The ethical dialogue of the occupational therapy profession has continued to evolve throughout subsequent decades in response to the increasing complexity of the service delivery landscape, with the most recent version of the Occupational Therapy Code of Ethics published in 2020 (AOTA, 2020a). For example, in her Eleanor Clark Slagle Lecture, Joan Rogers (1983) posited that the ultimate goal of clinical reasoning is answering the ethics question of what action is the best fit for a particular client. Furthering the professional conversation on ethics, Ruth Ann Hansen (1988) instructed practitioners to understand the necessity of integrating ethics into practice to respond to the complex conflicts that regularly arise within the profession.
These resources not only lay the foundation for confronting ethical dilemmas in practice but also recognize the importance of looking beyond individual function to maximize the client’s opportunity for engagement in occupation. Although ethics resources address the environment as a key factor in occupational performance outcomes, they do not go far enough in critiquing the influence of contextual barriers present throughout society that exclude disabled people 1 from occupational engagement. Looking to the field of disability studies (DS) will aid occupational therapy practitioners in reinvigorating the ethics of the field to better support clients’ engagement in meaningful occupations.
DS challenges the understanding of disability as the direct result of an individual impairment by asserting that environmental barriers and responses to individual differences act as disabling forces within society (Society for Disability Studies, 2016; Wasserman et al., 2011). By understanding disability in these terms, occupational therapy practitioners can broaden the scope of their interventions to meet the needs of their clients more holistically. Ultimately, increased incorporation of DS concepts into professional reasoning will increase the value of occupational therapy practice for all clients, regardless of whether they identify as disabled.
Occupational therapy scholars have already begun connecting professional knowledge to the field of DS, effectively rethinking how occupational therapy practitioners understand disability (Kielhofner, 2005; Magasi, 2008; Phelan, 2011). In addition, DS scholars Shakespeare et al. (2018) emphasized the benefit of appropriate rehabilitation services as a pathway to promoting disability equality and access to occupational engagement in areas such as education or employment. Despite these connections between DS and rehabilitation fields, continued uptake of DS concepts is necessary for these connections to be realized in rehabilitation practice. Heffron et al. (2019) found that, despite occupational therapy practitioners’ eagerness to integrate DS concepts into clinical practice, many barriers prevent the realization of DS concepts in practice. One strategy to address these barriers is to recognize how DS can enrich the ethical reasoning of clinicians.
The AOTA 2020 Occupational Therapy Code of Ethics (AOTA, 2020a) challenges clinicians to engage in mindful reflection before action. Included in clinicians’ mindful reflection should be critical thinking about how they understand disability and how they communicate their understanding with their clients, both overtly and subtly, while delivering occupational therapy services (Magasi, 2008). Drawing from disability ethics—the ethical branch of DS—practitioners will improve their reasoning skills to account for the values of disability culture. In effect, disability ethics expands occupational therapy practitioners’ awareness of relevant therapeutic intervention to support the right to occupational engagement for disabled clients and disabled people as a group.
Disability Ethics: Opportunities to Enhance Ethical Reasoning
Disability ethics was developed by disability rights activists and scholars as a critical response to the way in which traditional bioethics frames ethical dilemmas involving disabled and chronically ill people. Lacking direct disability experience and the resulting knowledge and values about human difference that comprise disability culture, bioethicists have often inaccurately equated disability with a diminished quality of life, leading to the unjust rationing or denial of appropriate care for people who are considered impaired (Asch, 2001). Rather than being governed by a specified set of principles, disability ethics challenges traditional approaches in bioethics by explicitly placing value on the lived experiences of disabled people (Asch, 2001). This approach may not initially appear radically different from other ethical frameworks; however, disability ethics recognizes that a single trait, such as hemiplegia, does not directly diminish quality of life (Longmore, 1995). The influence of environmental context on function makes it effectively impossible to accurately judge the valence of any individual characteristic (Hammel et al., 2008; Law, 1991). Therefore, disability should be regarded not as a deficit but as a form of natural human diversity and strength that reveals otherwise-overlooked ways to approach life and enriches society at large (Asch, 2001; Garland-Thomson, 2017). On the basis of this understanding of disability as valuable, disability ethics asserts that all people have a right to engage with their social, political, and physical environments with the equitable provision of needed supports or environmental modification (Asch, 2001).
The integration of disability ethics into occupational therapy practitioners’ reasoning and action can bring to fruition Garland-Thomson’s (2017) understanding of disability cultural competence in occupational therapy practice. This version of cultural competence goes beyond careful selection of language use, calling for both disabled and nondisabled people to respect how disabled people navigate the world around them (Garland-Thomson, 2017). Linton (1998) described disability culture as “an account of a world negotiated from the vantage point of the atypical” (p. 5). An awareness of and respect for disability culture is a key part of practitioners’ ability to apply disability ethics and demonstrate disability cultural competence. In effect, occupational therapy practitioners will improve the ability of the profession to respect how clients access occupational engagement, even if it is outside culturally prescribed norms.
The incorporation of disability ethics into practice will allow occupational therapy practitioners to work more effectively toward the outcome of occupational justice, ensuring that all clients have access to “the full range of meaningful and enriching occupations afforded to others” (AOTA, 2020b, p. 68). Accordingly, occupational therapy intervention should intentionally go beyond impairment remediation aimed at independence to address the full range of areas of occupational participation available to disabled people. Viewing the world through a lens of disability ethics is beneficial to both disabled and nondisabled people because it enables society to appreciate the knowledge gained from a more diverse sample of the human experience.
Changing Perspectives in Practice: A Case Study
To understand how the incorporation of concepts from disability ethics can influence occupational therapy decision making, we explore a case study.
Ashley is an occupational therapist working in an acute care hospital. She begins working with a new client, Stanley, a 63-yr-old man who prides himself on being a retired firefighter. His occupational profile reveals that he lives alone in a one-bedroom condo and spends most of his time watching television or playing with his three grandchildren. Stanley’s two adult children live in the area and provide intermittent support for financial management, medication setup, and community mobility. Stanley reports that he stopped driving after a recent stroke but hopes to return to driving soon. He was admitted to the hospital for a planned surgery to remove a salivary gland tumor. His chart elaborates on his recent stroke with documented residual impairments, including decreased visual attention to his left side, decreased fine motor skills, and decreased independence with executive function. After his tumor resection, Stanley will at least temporarily depend on enteral feeding via a percutaneous endoscopic gastronomy (PEG) tube rather than oral nutrition.
Scenario A: Clinical Reasoning Absent Disability Ethics
In their sessions, Stanley reveals to Ashley that he does not want to be a burden on his children and thinks it would be best if he stayed in a subacute rehabilitation setting, such as a nursing home, with staff to “take care of my tube.” Ashley broaches the subject of practicing tube feeding management to work toward independence for home, but Stanley declines this as a goal. Ashley instead focuses her sessions on activity tolerance and fine motor skills to promote Stanley’s ability to play with his grandchildren and recommends a nursing home stay as Stanley’s discharge disposition.
Ashley feels confident in her ethical decision making as a part of working with Stanley and is easily able to link her actions to the values and principles of the Occupational Therapy Code of Ethics (AOTA, 2020a). She embodies the core values of freedom and dignity while working with Stanley by abiding by Stanley’s personal choice to defer feeding tube management activities during their sessions (AOTA, 2020a). Ashley demonstrates nonmaleficence by recommending a transition to a nursing home for continued occupational therapy services and staff management of Stanley’s feedings, effectively not abandoning Stanley’s care (AOTA, 2020a). In addition, Ashley upholds Stanley’s autonomy throughout her treatment sessions by establishing a collaborative relationship with Stanley to select client-centered goals and interventions rather than imposing her preference to focus on the skills necessary for independent PEG tube feeding management (AOTA, 2020a). Both Ashley and Stanley agree that the occupational therapy goals, treatment, and discharge recommendations provided during Stanley’s acute care stay meet his needs.
Scenario B: Clinical Reasoning Informed by Disability Ethics
If Ashley were to approach this clinical situation using a disability ethics lens, she may understand Stanley’s experience and her role in his care differently. As a part of her commitment to living out the profession’s core value of equality, Ashley engages in the process of critical reflexivity by examining her own understanding of disability and combating personal biases that reinforce disability as an individual deficit (AOTA, 2020a; Phelan, 2011). Building on this practice of critical reflexivity, Ashley’s plan of care for Stanley acknowledges societal forces that limit his occupational engagement and applies this knowledge to her ethical decision-making process (Phelan, 2011).
To truly respect Stanley’s autonomy, Ashley must first facilitate Stanley’s comprehension of the implications of his occupational therapy treatment and discharge planning, including different ways of understanding dignified assistance and alternatives to nursing homes that the disability community has discovered or promoted (AOTA, 2020a). As Ho (2008) explained, patient decision making is influenced by societal perceptions of impairment, limiting what patients understand as reasonable options and effectively limiting their ability to exercise autonomy. Stanley has expressed his desire to not burden his family members by relying on them to manage his tube feedings, but he may not know that he has options for this care beyond a nursing home or family assistance. In addition to addressing Stanley’s goals for playing with his grandchildren, Ashley can broach conversations with Stanley about the option of addressing how to hire and train a personal assistant or facilitating Stanley’s ability to direct PEG tube management as a part of his occupational therapy treatment sessions.
Whether or not Stanley explores these avenues of occupational therapy intervention, broadening Stanley’s understanding of the landscape of disability experiences demonstrates the principle of fidelity by presenting significant information pertinent to his care (AOTA, 2020a). In addition, promoting Stanley’s critical awareness of disability rights throughout his recovery process will promote his ability to self-advocate for the best care, whether in the community or in an institution (Balcazar & Suarez-Balcazar, 2017). Viewing Stanley’s experience from the perspective of disability ethics does not mean that he must discharge back to his home; instead, it allows Ashley to access a wider range of potential treatment interventions and topics for patient education.
Implications for Occupational Therapy Practice
Understanding disability ethics will enhance occupational therapy’s professional code of ethics to account for disabled people’s experiences and to promote equitable resource access for clients. In Stanley’s case, this could be acknowledging the option to live with the supports needed to manage PEG tube feedings in the community during a medical team conference and promoting life with a disability as a viable and valuable existence. Integrating perspectives from disability ethics into professional reasoning will help practitioners better meet the needs of the disability community through occupational therapy practice. Reasoning and decision making informed by disability ethics does not mean that all occupational therapy practitioners must participate in large-scale advocacy efforts, but it does mean that they will engage in everyday advocacy for the rights of disabled people.
Practitioners can begin to integrate DS and disability ethics into their reasoning in the following ways:
Understand the social model of disability and how environmental factors and dominant cultural beliefs can be disabling. As seen in Hammel et al.’s (2008) article, participation is the product of interaction between a person and the environments in which they engage, not just individual ability.
As Magasi (2008) suggested, engage with disability culture, including first-hand narratives of disabled people’s lives, to gain a broader understanding of what occupational performance can be. For example, Ashley could explore the writing of Chicago film critic Roger Ebert (2011), who relied on a gastronomy tube after cancer treatment.
Explore the motivation behind client-selected goals for treatment. Is the treatment priority influenced by the cultural stigma associated with the use of adaptive technology or personal assistance to engage in activities? Investigating the influences behind a client’s stated preferences for treatment can not only build therapeutic rapport with the client but also work toward the destigmatization of disability by offering various methods for occupational engagement.
Explore the website of their regional ADA Center to become more informed about the implications of this civil rights legislation, including the right to live in the community (ADA National Network, 2021).
Learn about their state’s or territory’s Protection & Advocacy Systems and Client Assistance Programs that provide legal advocacy for disabled people in the United States (National Disability Rights Network, 2021).
This list is not comprehensive; instead, it is a place to begin to understand DS perspectives and infuse disability ethics into how occupational therapy practitioners engage with clients.
Conclusion
Occupational therapy practitioners have the ability and responsibility to advocate for the rights of disabled people in their everyday actions as clinicians. Connecting with the concepts of DS and disability ethics will bolster the profession’s ability to respond to the complex demands of current and future occupational therapy practice.
Footnotes
This article uses identity-first language rather than person-first expressions (e.g., people with disabilities) to align with the social model of disability, a foundational model in the field of disability studies.
Acknowledgments
Amy Roder McArthur thanks her academic advisor, Joy Hammel, for her support and guidance related to this article and for continuing to help her develop as both an occupational therapist and a disability studies scholar.