|Disability Studies Quarterly
Fall 2004, Volume 24, No. 4
Copyright 2004 by the Society
for Disability Studies
Redefining Disability to Promote Equality: The Role of Disability Studies in Educating Occupational Therapists
Beth Ann Wright, J.D., OTR/L
Abstract: Disability Studies (DS) can retain its integrity and potentially expand its role in progressive occupational therapy (OT) programs. The leaders of the OT profession are endorsing a broader view of disability as a universal human condition consistent with the World Health Organization's (WHO's) International Classification of Functioning, Disability and Health (ICF) instrument. This article examines the role Disability Studies might play in the education of OT's. First, preeminent scholars in the field of OT endorse the development of the WHO's ICF instrument. Second, allied Health Professions, such as OT, who embrace the use of the ICF instrument help preserve, rather than destroy the fundamental framework of disability studies as well as the medical model. Third, both OT and DS can examine external environmental factors, such as the law, as relevant contextual factors to improve the health status of individuals with disabilities under the WHO's ICF instrument.
DS can retain its integrity and potentially expand its role in progressive OT programs. As OT continues to refine its role in the lives of individuals with disabilities, preeminent scholars in the profession are wisely exploring the broader landscape of how disability itself is being redefined. The leaders of the OT profession are endorsing a broader view of disability as a universal human condition consistent with the WHO's ICF instrument. While this emerging trend towards a broader theoretical framework in OT holds promise for DS, simultaneously DS can take several proactive steps to develop its role in OT education. Namely, DS can promote guest lecturer days, develop an elective course in DS, chronicle case studies of individuals with disabilities, and contribute to disability law.
The purpose of this article is to examine the role DS might play in the education of occupational therapists. First, preeminent scholars in the field of OT endorse the development of the WHO's ICF. Second, allied Health Professions, such as OT, who embrace the use of the ICF help preserve, rather than destroy, the fundamental framework of DS as well as the medical model. Third, both OT and DS can examine external environmental factors, such as the law, as relevant contextual factors to improve the health status of individuals with disabilities under WHO's ICF instrument.
Proposition 1: Preeminent scholars in the field of OT endorse the development of the WHO's ICF instrument.
International efforts spawned through the WHO are advocating a radical paradigmatic shift in how the world perceives and defines disabilities (WHO, 2001). The ICF, first published by WHO in 1980, creates a standard language and framework for describing health and health-related states (WHO, 2001). Notably, ICF focuses on an individual's level of health rather than on disability (WHO, 2001). As such, a continuum of varying degrees of health is created in contrast to traditional notions of a bright line defining a person as "disabled" versus "normal." Dramatically, this shift in perspective acknowledges that incremental decline as well as incremental improvement in one's relative health status is a universal human experience (WHO, 2001).
In 2001, the 191 Member States of WHO, which includes the United States, agreed to adopt ICF as the basis for scientific standardization of data on health and disability worldwide (WHO, 2001). As a result, ICF is intended to serve as a powerful tool in addressing disability issues from clinical management, to multidisciplinary research, economic impact, and public policy development (WHO, 2001).
The World Health Organization includes participation as a core component of assessing health and disability within the new ICF instrument (Law, 2002; WHO, 2001). WHO defines participation as involvement in a life situation. In ICF, participation is categorized under the following domains: learning and applying knowledge; general tasks and demands; communication; mobility; self-care; domestic life; interpersonal interactions and relationships; major life areas such as work or school; and community, social and civic life (Law, 2002; WHO, 2001).
Similarly, OT research has consistently shown that participation in meaningful occupations, particularly work and leisure, has an important positive influence on health and well-being (Law, 2002). Participation is defined by OT as involvement in formal and informal everyday activities (Law, 2002). "Participation is a vital part of the human condition and experience--it leads to life satisfaction and a sense of competence and is essential for psychological, emotional, and skill development" (Law, 2002).
Preeminent scholars in the field of OT recognize the significance of WHO's emphasis on participation and its implications for their profession (Law, 2002). Governments, health care systems, political bodies, and allied health professionals alike are expected to use ICF as a common language to describe how people live with a health condition, how we understand participation, how we measure it, and how we promote or inhibit disability (Law, 2002). Progressive OT curriculums will educate students about the impact of international public policy: specifically, how redefining disability may impact health care, civil rights, economic systems, and society. At a minimum, OT students should be exposed to the ICF instrument to gain a perspective of the holistic worldview of health and disability. In this regard, the theoretical underpinnings of ICF itself may have the ultimate effect of broadening the conceptual framework of disability within OT as a profession.
Proposition 2: Allied Health Professions, such as OT, who embrace the use of the ICF instrument help preserve rather than destroy the fundamental framework of disability studies as well as the medical model.
Historically, two theoretical models of disability have polarized the dialogue regarding health care and civil rights issues related to disabilities. The medical model views disability as "a feature of the person, directly caused by disease, trauma or other health condition, which requires medical care provided in the form of individual treatment by professionals" (WHO, 2001). In sharp contrast, the social model views disability as "a socially-created problem," not at all attributable to an individual (WHO, 2001). Rather, the social model contends that "disability demands a political response, since the problem is created by an unaccommodating physical environment brought about by attitudes and other features of the social environment" (WHO, 2001).
To advance our understanding of the continuum of health, WHO recognized the inadequacy of each model individually, but simultaneously recognized the strength of each as partially shaping our understanding of the complex human experience of disability (WHO, 2001). According to WHO, disability is a complex phenomenon comprised of both individual and social elements. As disability theory advances, therefore, developing our understanding of the interplay between the individual and social elements that impede and promote varying degrees of health is a key component to improving the human condition. The newly proposed model, called the biopsychosocial model, on which ICF is based, synthesizes the best of both primary models in an effort to understand the complexity of how humans experience improvement and decline in their health status (WHO, 2001).
The biopsychosocial model is an applied theory deriving its essence from two primary theories, the medical model and the social model. Imagine for a moment a triangle. These two primary theories serve as the foundation, each pulling in opposite directions to establish the base angles of this evolving framework. The development of this new theory, however, does not compel the abandonment of either the medical model or the social model. Quite the opposite is true, in fact. The continued evolution of the biopsychosocial model depends, in part, on the continued development of these primary theories in their pure form. To ignore or, worse yet, entirely abandon, the historical roots of the biopsychosocial model would be like knocking the base out from under a mountaintop. This new applied theory would collapse upon itself were it not to continue to develop from the two pure theoretical frameworks. Refining the essence of the medical model and social model as divergent theories with unique perspectives about disability of an individual and disability in a social context, respectively, substantially contributes to our understanding of how an individual experiences disability in the sociocultural context of the biopsychosocial model.
Disability Studies, as an emerging academic field, epitomizes the social model. DS encourages the scholarly study of perspectives that place disability in social, cultural, and political contexts. The mission of the Society for Disability Studies (SDS) is to broaden our understanding of disability in all cultures and historical periods, to promote greater awareness of the experiences of disabled people and to contribute to social change (Society for Disability Studies [SDS], 2004). A primary goal of DS is to challenge the view of disability as an individual deficit or defect that can be remedied solely through medical intervention or rehabilitation by "experts" and other service providers. In contrast, DS explores a broader base of philosophical, historical, racial, and theological theories that examine social, political, cultural, and economic factors that define disability and subsequently may guide an enlightened interdisciplinary response to promote health and well-being (SDS, 2004).
Additionally, DS conceives disability as an immutable characteristic, on par with race, national origin, class, gender, and sexual orientation (SDS, 2004). As such, measures to reduce the stigmatization of those afflicted with disease or impairments take on the dimensions of a civil rights initiative advocating equality for those with disabilities.
Not surprisingly, due to the relatively recent changes in the economics of the U.S. health care system, OT educators are rethinking the fundamentals of this profession's curriculum (Wood et al., 2000). This "curricular renaissance" centers professional education around the construct of occupation, drawing on the perspectives of multiple disciplines (Wood et al., 2000). As leaders to implement change, the core faculty of the OT program at the University of North Carolina--Chapel Hill, embarked on a journey to dramatically redesign their professional education curriculum (Wood et al., 2000). One component of their formal evaluative process to guide restructuring the program, called "environmental scanning and analysis," examined trends in the health care environment (Wood et al., 2000). The UNC faculty analyzed and interpreted problems within OT in light of internal and external critiques of the field, emerging research, considerations of health care policy and financing, and promising accomplishments by occupational therapists around the world (Wood et al., 2000). Internal and external critiques alike charged rehabilitation professionals with being focused merely on "fixing" bodily deficits while all but ignoring far more powerful environmental barriers to societal inclusion (Wood et al., 2000). Consistent with the WHO initiative to redefine disability within a broader environmental context, the forward-thinking faculty at UNC challenged traditional notions of disability under the medical model.
After a three-year process of redesigning its educational curriculum, the academic content in the program at UNC--Chapel Hill is now organized around seven curricular themes that are woven into the substantive coursework (Wood et al., 2000). Three philosophical traditions supported by occupational science, including occupation, the human as an occupational being, and occupation as a medium of change, compose the core of the OT program (Wood et al., 2000). Three more supporting themes make up the core content of coursework including clinical reasoning, investigative reasoning, and ethical reasoning that guide best practice models (Wood et al., 2000). The final theme, occupational therapists as scholars and change agents in systems, directs course content pertaining to leadership and innovation. This theme represents professional education's ultimate goal (Wood et al., 2000). In radically departing from a traditional educational model, this program structures coursework content around these seven themes as opposed to discrete subject matter. While focusing on the theme of occupation, students immerse themselves in the study of social movements and philosophies that gave rise to the idea of occupation as therapy as well as modern approaches to studying occupation (Wood et al., 2000).
The theme of humans as occupational beings encompasses the following four content areas: the biological basis of the occupational human, occupational meaning, historic and sociocultural contexts of occupation, and temporal orchestration of occupational patterns. As such, this theme is emblematic of the emerging biopsychosocial view of disability that is simultaneously developing internationally across a broad range of academic fields and now formally endorsed by WHO.
Specifically, in the OT curriculum at UNC,
the [s]tudy of the biological basis of the occupational human encompasses considerations of biological requirements for occupation and the effects of variations in performance components, such as sensory processing, on daily activities. Transformations in occupational behavior are also related to issues of maturation, aging, illness, congenital or acquired disabilities, and sources of individual differences affecting multiple trajectories of development. Study of various psychological and sociocultural perspectives on activity and agency further enrich understanding of the occupational human. The importance of attending to issues of occupational meaning is stressed by directly tying biomedical content to the phenomenological study of disability and compelling first-person accounts of living with various health conditions. Recognizing the power of context, students are also immersed in evidence that occupations and their related effects and meanings are embedded in varying social histories and sociocultural contexts (Wood et al., 2000) (internal citations omitted).
Clearly, the role of DS is strengthened in a progressive OT curriculum because DS contributes a broader knowledge base of disability within sociocultural contexts.
The final theme, occupational therapists as scholars and change agents in systems, promotes the evolution of theoretical constructs, leadership, and current or potential environments for practice (Wood et al., 2000). Students analyze how national policy, reimbursement, interdisciplinary dynamics and organized culture affect the practices, and status of occupational therapists (Wood et al., 2000). Occupational science is an emerging academic discipline historically rooted in the philosophical, intellectual, and humanitarian traditions of OT (Wood et al., 2000). Occupational scientists are generating new knowledge about occupational behavior across the life span, in diverse cultural contexts, examining persons with and without disabling conditions (Larson, 1998; Pierce, 2000; Segal & Frank, 1998; Townsend, 1997).
Again, DS can share its unique perspective about disability to influence how occupational therapists conceive disability through broadening the core philosophy of OT. Accordingly, treatment intervention and milieus for service delivery may also be expanded. The overall potential impact resulting from this broadened theoretical framework of health and well-being can now be measured and analyzed with the use of ICF. In turn, ICF can validate or rebut the efficacy of this emerging biopsychosocial model.
Additionally, in their second year of studies, the OT students of UNC-Chapel Hill, as part of their interdisciplinary studies, take an elective in the humanities, social sciences, public health, health policy, or a specialty clinical focus (Wood et al., 2000). In this case, OT appears to be inviting academic fields such as DS to fulfill the students' elective requirement. DS, therefore, could consider creating an elective course tailored to meet the stringent requirements of a masters or doctorate-level OT curriculum.
Another pedagogical lesson, the case study method, is being added to progressive OT programs. Case studies are designed to inculcate a fundamental shift in thinking away from dated, component-driven practices that mainly target deficits internal to the human body and toward far more holistic and evidence-based practices that mainly target elements of person-environment transactions that significantly affect performance capacities and well-being (Wood et al., 2000). Naturally, DS can contribute to the case study method through publication of the chronicles of individuals living with disabilities across a wide spectrum of cultures, historical periods, political systems, and economic circumstances (SDS, 2004).
Another OT program has restructured its objectives and approach to teaching research methodologies which, in turn, also creates a role for DS. The research methods course in Boston University's OT program has been dramatically redesigned (Tickle-Degnan, 2000). Traditional research methods courses teach therapists the fundamentals for conducting clinical research (Tickle-Degnan, 2000). In contrast, this redesigned course primarily requires students to conduct research by "collecting evidence" from published research literature and from one's clinical practice to answer questions that arise in real-life professional situations (Tickle-Degnan, 2000). This shift in methodology moves clinical research toward a stronger evidence-based practice (Tickle-Degnan, 2000). Clinicians must examine a broad field of literature and think critically about the efficacy of treatment intervention against the backdrop of existing research rather than in a vacuum as so often occurs in traditional clinical research, especially single case designs or small sample-size studies. Anecdotal single case designs must be examined from a broader perspective of literature, then, either integrated into, or discredited from, best practice models. Students at Boston University are required to conduct research, analyze the literature and arrive at conclusions about evidence that not only confirms their beliefs and expectations, but also refutes their beliefs and expectations (Tickle-Degnan, 2000). The goal is to conduct unbiased research, challenge traditional thinking, and create best practice models based upon a broader understanding of the human experience of disability.
Accordingly, the body of relevant DS literature warrants inclusion in a research methods course that examines the existing body of knowledge about disability to guide evidence-based practice. One difficulty from OT's perspective, at least to date, would be identifying and accessing literature that can properly be claimed within the province of DS.
Proposition 3: Both OT and DS can examine external environmental factors, such as the law, as relevant contextual factors to improve the health status of individuals with disabilities under the WHO's ICF instrument.
Reduction in the incidence and severity of disability in a population is best accomplished by improving the functional capacity of the person and by improving his or her performance through modification of the social and physical environment (WHO, 2001). In ICF, disability and functioning are viewed as the outcome of the interaction between health conditions (i.e. diseases, disorders, and injuries) and contextual factors (WHO, 2001). Contextual factors are categorized as either external environmental factors or as internal personal factors (WHO, 2001). External environmental factors include, but are not limited to, social attitudes, architectural characteristics, legal, and social structures, as well as physical characteristics such as climate, terrain, and so forth (WHO, 2001). Internal personal factors include, but are not limited to, gender, age, coping styles, social background, education, profession, past and current experience, overall behavior patterns, individual character, and other such factors that affect how an individual experiences disability.
For example, the law is one important contextual factor of the external environment that impacts disability. It follows that OT research should carefully examine how the law defines disability and affords rights to those with disabilities. The law is composed of rules laid down in a politically organized society under the authority of the sovereign, as well as rules recognized from a universalized conception of human nature under a philosophical system of moral and ethical principles (Garner, 1999). The nature of American jurisprudence, therefore, preserves a place for DS-type legislative findings, public policy positions, legal argument, and legitimate court opinions, as well as more traditional notions of law.
Specifically, the United States Federal Constitution allows congress to pass legislation through its grant of authority under the Spending Clause, typically viewed as health care spending, or under the Fourteenth Amendment, typically viewed as civil rights or antidiscrimination initiatives for those with disabilities. The law grants, defines and protects human rights. The law, primarily through Section 5 of the Fourteenth Amendment to the U.S. Constitution, serves as the great equalizer by raising up those who are oppressed, discriminated against, and deprived of liberty.
Occupational therapy research has shown that institutional environmental factors (economic, political, and attitudinal) significantly affect the participation of persons with disabilities. Moreover, issues of poverty, cost of programs, affordable housing, lack of information and physical assistance, lack of inclusion of persons with disabilities in planning, and staff training or attitudes limit participation. In the area of research, developing an understanding of how these factors work together to influence participation is paramount to improving health status. This profession is developing qualitative methods and more complex quantitative methods of analysis to enable researchers to disentangle the complex relationship among person, environment, and participation in occupations.
Occupational therapy as a profession should take a more proactive stance on encouraging scholarly research of legislation, administrative agency action, and judicial opinions. The current status of the Americans with Disabilities Act (ADA) highlights the point (Americans with Disabilities Act [ADA], 2003). The ADA was enacted as a remedial measure to combat discrimination through congressional authority granted under Section 5 of the Fourteenth Amendment to the U.S. Constitution.
As is frequently the case, congress will pass legislation without interpreting all of the key statutory terms. Rather, congress often delegates interpretation of at least some statutory terms to an appropriate federal administrative agency. Ultimately, the judiciary determines whether a statutory term was properly interpreted and frequently interprets such statutory terms itself. To do so, the U.S. Supreme Court will look to the legislative history of the Act, the statute itself, companion statutes, delegation of authority to administrative agencies, the developing body of case law, common law principles, dictionaries, learned professions, and common human experience.
In regards to the ADA, congress failed to interpret the statutory term "major life activities" among other key terms. Additionally, congress did not delegate interpretation of these key statutory terms to any administrative agency specifically despite congress' express delineation of various oversight functions required by various administrative agencies (ADA, 2003). In a chain of cases culminating in Bragdon v. Abbott and Toyota Motor Manufacturing, Kentucky, Inc. v. Williams, the U.S. Supreme Court concluded that agencies such as the Equal Employment Opportunities Commission lacked the necessary authority to interpret the term without an express delegation by congress. More importantly, the U.S. Supreme Court has refrained from interpreting the key term "major life activities" under the ADA.
Surely, every OT must be thinking to herself that "major life activities," commonly abbreviated MLAs, sounds very much like "activities of daily living," commonly abbreviated ADLs. Indeed, the therapists are correct. Upon examining the statutory language of the Act and companion statutes, a strong legal argument can be made in favor of the courts looking to OT, as a learned profession that is already strongly interwoven into numerous pieces of federal legislation and regulation, to aid in interpretation of the term MLAs under the ADA (Wright 2004).
Similarly, DS scholars have their own understanding of what might constitute "major life activities." As previously acknowledged, the courts will entertain notions of natural law which is based upon everyday human experience. DS goes a step further, however, through developing knowledge about human experience as an academic field of study rooted in history, literature, racial prejudice, women's studies, political movements, and the like. As such, legal arguments could be made based upon DS theories to promote equal rights for individuals with disabilities.
In conclusion, DS can retain its integrity and potentially expand its role in progressive OT programs. The leaders of the Society for Disability Studies and the leaders of the OT profession should at least consider engaging in direct informal communication regarding the benefits and concerns of integrating DS into OT curriculum.
Americans with Disabilities Act of 1990, 42 U.S.C. § 12101 et seq. (2003).
Bragdon v. Abbott, 524 U.S. 624 (1998).
Garner, Bryan A., (ed) (1999). Black's Law Dictionary, 7th Edition.
Larson, E. (1998). Reframing the meaning of disability to families: The embrace of paradox. Social Science and Medicine, 47, 865-875.
Law, M. (2002). Participation in the Occupations of Everyday Life. American Journal of Occupational Therapy, 56(6), 640-649.
Law, M., & Baum, C. (Guest eds.). (1998). Evidence-based practice [Special Issue]. Canadian Journal of Occupational Therapy, 65(3).
Pierce, D. (2000). Maternal management of the home as a developmental play space for infants and toddlers. American Journal of Occupational Therapy, 54, 290-299.
Segal, R., & Frank, G. (1998). The extraordinary construction of ordinary experience: Scheduling daily life in families of children with attention deficit hyperactivity disorder. Scandinavian Journal of Occupational Therapy, 5, 141-147.
Society for Disability Studies. (2004). Society for Disability Studies General Information. http://www.uic.edu/orgs/sds/generalinfo.html.
Tickle-Degnan, L. (2000). Teaching Evidence-Based Practice. American Journal of Occupational Therapy, 54(5) 559-560.
Townsend, E. (1997). Occupation: Potential for personal and social transformation. Journal of Occupational Science: Australia, 4, 18-26.
Toyota Motor Mfg., Kentucky, Inc. v. Williams, 534 U.S. 184 (2002).
World Health Organization. (2001). International classification of functioning, disability and health. Geneva, Switzerland: Author.
Wood, W., Nielson, C., Humphry, R., Coppola, S., Baranek, G., & Rourk, J. (2000). A Curricular Renaissance: Graduate Education Centered on Occupation. American Journal of Occupational Therapy, 54(6), 586-597.
Wright, B. (2004). What will Guide the Courts in Interpreting the Term "Major Life Activities" under the Americans with Disabilities Act? George Mason University Civil Rights Law Journal, 15(1), in press.
Disability Studies Quarterly (DSQ) is the journal of the Society for Disability Studies (SDS). It is a multidisciplinary and international journal of interest to social scientists, scholars in the humanities and arts, disability rights advocates, and others concerned with the issues of people with disabilities. It represents the full range of methods, epistemologies, perspectives, and content that the field of disability studies embraces. DSQ is committed to developing theoretical and practical knowledge about disability and to promoting the full and equal participation of persons with disabilities in society. (ISSN: 1041-5718; eISSN: 2159-8371)