I promised a few months ago to update readers about a New York City-based project that I am organizing called “Rethinking Rehabilitation.” My next step will be to invite folks from the New York City area to join the Task Force. Here is the project description:
Rethinking Rehabilitation Task Force
Julie E. Maybee
Department of Philosophy
City University of New York
The Rethinking Rehabilitation Task Force will bring together a group of clients/families, scholars familiar with disability from a variety of disciplines, and rehabilitation practitioners in the New York City area to examine how new models of disability should impact research into, and the practice of, rehabilitation.
The Task Force’s project begins with the assumption that the practice of rehabilitation must be rethought as a result of a paradigm shift in the way disability is defined and understood. The shift from the old “medical model” of disability to the “social model” of disability requires a corresponding shift in the conceptualization of the role that rehabilitation should play in the society and in the lives of disabled people. The “social model” of disability urges us to define disability as a category of identity that is in some sense socially constructed. In the classic version that was developed by the Union of the Physically Impaired Against Segregation (UPIAS), an organization of impaired people founded in the mid-1970’s in Britain, people are not disabled by their bodies or impairments, but by the societies in which they live. “Disability” is an identity and experience that is imposed on people by the society (UPIAS 1976). Impairments do not disable people, society’s prejudice, discrimination and oppression disables people with impairments. This social model was intended to replace the medical model of disability, which defined disability solely in terms of the physical and/or mental impairments of an individual. According to the medical model, someone is disabled by his or her inability to move his or her legs, for instance, or by an inability to see, hear or perform certain cognitive tasks. Against this traditional medical model, the social model defined disability as a category of social oppression similar to other socially defined categories of identity and oppression—such as gender, race, class, and ethnicity. The social model suggests that, to adapt an old phrase from the early days of feminism, the political is personal. Social and political institutions and attitudes cause disability, or disable individuals, and thereby construct the personal experiences of impaired individuals as disabled (an excellent summary and history of the social model can be found in Thomas 2004).
This social understanding of disability impacts conceptualizations of the role of rehabilitation. Although there are different specific versions of the social model, they agree that disability cannot be defined simply as a deficit or impairment belonging to an individual who needs to be fixed/corrected or made “normal” in body and mind by rehabilitation (the medical model). The social model implies that the medical model’s emphasis on “fixing” patients through rehabilitation is ethically problematic. It feeds a culture that devalues the lives of disabled people (by implying that they need to be “fixed,” for instance) and, like “assimilation” models of racial and ethnic relations, reinforces the larger society’s problematic demands for everyone to be the same or “normal” (Williams 2001, 136; Asch 2001, 300-302).
At the same time, the Task Force also begins with the assumption that rehabilitation aimed at improving people’s lives, experiences and opportunities can in principle be justified. The aim is therefore to rethink rehabilitation in light of the lessons of the social model. Since rehabilitation is intended to remediate disability, a social definition of disability requires a social model of rehabilitation. The practice of rehabilitation must be reconceptualized to take seriously the degree to which the political is personal, or to which the lives and experiences of disabled people are constructed by social contexts. This shift to understanding the social context of rehabilitation requires research into, and the development of, new philosophies and conceptual models of rehabilitation (Pledger 2003). The overall question before the Task Force is: how should we reconceptualize research into and the practice of rehabilitation in light of the socially constructed nature of disability? Ultimately, because rehabilitation recast based on the social model will do a better job than traditional rehabilitation founded on the medical model does of considering the multifaceted, social complexities of the lives of disabled people, it should also improve rehabilitation outcomes.
The Task Force aims to bridge the sometimes contentious divide created by the social model between, on the one hand, clients/families and scholars rooted in the disability-rights and activist community who emphasize the social nature of disability, and, on the other hand, scholars and practitioners rooted in the medical professions, who must justify spending public and private money on services that are provided to individuals. How do we recast and reorganize rehabilitation? How can we reconcile the view of many clients and disability-rights activists that the socially constructed nature of disability needs to be taken more seriously with the need of the rehabilitation/medical establishment to justify spending public and private funds on services for individuals? Both sides are dedicated to the needs of clients of rehabilitation and people with disabilities, and agree that rehabilitation services are valuable for many people who are born with or acquire disabilities. Clients and their families often fight for more rehabilitation services and help from practitioners. However, the social model also suggests that rehabilitation practitioners could use some help from clients and their families, and from disability scholarship. As one rehabilitation practitioner suggested, if disability is—at least in part—socially constructed, then rehabilitation for an individual must include the “rehabilitation” of the larger society. This “rehabilitation” of the larger society’s approach to and understanding of disabled people will require the activism of all of us: clients, their families, rehabilitation professionals, and policy makers. In spite of lip service by the various professional organizations of rehabilitation professionals, these organizations or rehabilitation as an organized health care system have never seriously considered a why and how of reorganizing practices and aimed-for patient outcomes to accommodate the implications of the social model.
The Rethinking Rehabilitation Task Force is a sub-project of a collaborative, interdiscipli-nary and pragmatic project called “What Sorts of People Should There Be?,” organized by Robert Wilson, Professor of Philosophy at the University of Edmonton at Alberta. The prac-tice of rehabilitation applies norms that make assumptions about what people should be like, involves science and technology, and has real-world implications. The Rethinking Rehabili-tation Task Force joins the “What Sorts of People Should There Be?” project’s goal to inter-rogate the ways in which Western societies have used science and technology to enforce—in practice—norms about what sorts of people there should be. A description of Prof. Wilson’s overall project may be viewed at http://www.whatsorts.net.
The social model of disability implies that the project of rethinking rehabilitation should have four characteristics. First, because of the inclusion of social and environmental factors in addition to medical and physical factors, it must involve interdisciplinary collaboration (Tate and Pledger, 2003). It must integrate insights drawn from psychology, sociology, anthropology, history, public policy, philosophy, education, political science and so on, as well as the medical and allied health disciplines.
Second, the social model’s emphasis on disability as a socially constructed experience (the “disability experience” (Tate and Pledger 2003)) suggests that rehabilitation should be rethought from the point of view of the lived life, or, in more philosophical terms, phenomenologically.
Third, because the project of rethinking rehabilitation must pay attention to the lived experience of disability, it must be increasingly client-driven, or driven from the points of view of clients and their families (Pledger 2003; Tate and Pledger 2003). However, we must be careful not to understand clients’ experiences in an overly individualistic way. The social model suggests that the experiences of clients are not just individual experiences, but rather are fundamentally social in nature. What is of interest for the social model is the way in which the experiences of clients are shaped or constructed by the social context. Moreover, for the research to be client-driven, it must be accessible to people with a variety of abilities (Olkin 2004).
Fourth, to the degree that rethinking rehabilitation involves making judgments about what is important and good, it is inextricably value-laden (Caplan and Haas 1987). Rethinking rehabilitation using a social model will therefore integrate questions about values and ethics, as well as facts.
Because the goal of the Task Force is to consider how to construct a social model of rehabilitation, more specific questions that will be raised for the Task Force cannot be specified in advance. However, it is possible to survey some questions that the Task Force might well pose. Since the social model conceives of disability as an experience that is constructed by the larger society, it inspires a number of research questions about the social context of rehabilitation and disability. These are questions that examine the impact that various social contexts have on rehabilitation. For example, how do environmental and social contexts shape the disability experience, allowing us to better predict how individuals will function in specific environmental contexts (Pledger 2003); when and where on the spectrum between the individual performance of tasks and the social and environmental context does a person become disabled (Pledger 2003); do—and, if so, how do—racial and ethnic minority populations, women, gay and lesbian clients, and members of other socially significant groups experience the rehabilitation process in a way different from the way members of dominant populations do (Tate and Pledger 2003); what ethical challenges at the social level are posed for rehabilitation by advances in biomedicine and technology (Tate and Pledger 2003); can a minority model of disability (which treats people with disabilities as members of a minority group that is similar in status to other social groups considered to have minority status, such as African Americans or Latinos) be applied to understanding the disability experience (Olkin and Pledger 2003) and be helpful in increasing the understanding and accommodation of disability in society at large; and how can the rehabilitation community facilitate the understanding and accommodation of disability in American society (Marcantuono 2007)?
The social context may also be experienced as part of an individual’s identity, however, and so may well play a role in the clinical context as well. Research in education makes clear that social identities impact student learning (see, for example, Daisuka (2007), Lourque and Garcia (2000), and Waters (1994) for discussions about how the retention of ethnic identities seems to improve educational outcomes for ethnic and racial minorities). Practitioners in re-habilitation medicine often see themselves as teachers and educators (Caplan and Haass 1987). This way of conceiving of the role of rehabilitation practitioners implies that there may be parallels between educational environments and rehabilitation settings. This parallel suggests that social identities may also play a role in the success of clinical rehabilitation, giving rise to the question: should—and/or how should—ethnic and/or racial identification, gender identity, and other forms of social identity be encouraged and facilitated as part of the process of assisting clients who want or need to see themselves as different persons after the onset of a disease or injury with rebuilding their identities during rehabilitation? This parallel between clinical rehabilitation and education may also inspire other questions addressing the intersection between the larger social context and clinical practice in rehabilitation medicine.
In the clinical context, the social model of disability inspires a number of possible research questions for theorizing about rehabilitation, such as: in light of the model’s emphasis on the contextual nature of disability, what conceptual models should be used to assess individuals’ performances of tasks and the outcomes of rehabilitation (Stineman et. al 1997); applying the social/environmental perspective, how are uses of technology changing the clinical setting and rehabilitation outcomes (Tate and Pledger 2003); to what degree should the already-existing prejudicial attitudes of societies be considered in planning rehabilitation treatment strategies and assessing outcomes (Tate and Pledger 2003); how do we design therapeutic strategies to empower clients and their families (Tate and Pledger 2003; Olkin and Pledger 2003); can (or should) the minority model of disability’s emphasis on power and oppression be reflected in the therapeutic strategies of rehabilitation; can encouraging a disability identity (along the model of minority-status identity) in clinical settings improve rehabilitation outcomes by encouraging clients, for example, to become more aggressive advocates for themselves?
The social model’s emphasis on the social nature of the lived experience (and on the phenomenological dimensions of disability) also inspires a number of research questions for the clinical context that might benefit from further research, such as: does—and, if so, how does—the medical model’s emphasis on addressing deficits (“we will fix you”) interfere with the rehabilitation process; at the same time, does the emphasis on adaptation and adjustment to impairments that is placed in intensive rehabilitation contexts (Caplan and Haas 1987) undercut clients’ motivation (Ben-Yishay and Daniels-Zide 2000); what is the role of hope in successful rehabilitation and how can it be fostered (Diller 2007); what are the most successful strategies to use in communicating with clients and their families (Diller 2007); how does the rehabilitation practitioner explain possible deficits or impairments to clients generally, or to children or clients with cognitive limitations (Diller 2007); how and when should the rehabilitation practitioner tell clients about their limitations (Diller 2007); when and why should rehabilitation strategies focus on addressing weaknesses or deficits and when should they focus on building strengths to compensate for impairments (Diller 2007); what role does the concept of acceptance play in motivating clients in the rehabilitation process (Ben-Yishay and Daniels-Zide 2000); and what role might anger and other “hot” emotions often discouraged in the larger, dominant culture (if not in all of its sub-cultures) play in motivating clients and their families in the rehabilitation process? Which rehabilitation techniques and strategies involve (1) restoring “normal” functioning, (2) simulating approved “normal” functioning (“passing,” in the old parlance of racial discourse), or (3) circumventing “normal” functioning, and what are the social meanings and implications of the distinction between these three types of strategies (Wasserman 2008)?
Task Force Procedure, Time-line and Outcomes
The Task Force’s membership will be put together over the next two months by invitation and recommendation. Prior to the first meeting, Task Force members will construct a bibliography of shared, background literature that would help members to prepare for the work. The Task Force will meet once per month over the course of six-eight months during the 2008-2009 academic year, beginning in November. The Task Force will consider the production of the following outcomes:
• A co-authored article reporting the results of the Task Force’s deliberations, to be published in a peer-reviewed journal;
• A co-authored presentation or presentations, to be delivered at various relevant conferences, including, for instance, those of the Society for Disability Studies and the American Congress of Rehabilitation Medicine, as appropriate;
• A co-authored proposal for a grant to study some aspect of a social conception of rehabilitation (the aspect in question to be chosen by the Task Force);
• A 2-3 page handout of questions for clinicians to ask themselves when working with existing and new clients in rehabilitation contexts—questions inspired by a social understanding of rehabilitation. These questions will help clinicians reflect on how to assist clients with becoming the sorts of people that the clients would like to be.
Asch, Adrienne. 2001. Disability, bioethics, and human rights, in Albrecht, Gary L., Seel-man, Katherine D., and Bury, Michael (eds.), Handbook of Disability Studies, Thou-sand Oaks CA: Sage Publications, 297-326.
Ben-Yishay, Yehuda and Daniels-Zide, Ellen. 2000. “Examined Lives: Outcomes After Ho-listic Rehabilitation,” Rehabilitation Psychology 45:2 pp. 112-129.
Caplan, Arthur L., (Daniel Callahan) and Haas, Janet. 1987. “Special Supplement: Ethical and Policy Issues in Rehabilitation Medicine,” The Hastings Center Report, 17: 4 (August-September), pp. 1-20. Although Callahan was listed originally as an author, a subsequent correction indicated that he had only provided assistance. See “Correction: Special Supplement: Ethical & Policy Issues in Rehabilitation Medicine,” The Hastings Center Report,” 17:5 (October-November), p. 14.
Daisuka, Akiba. 2007. “Ethnic Retention as a Predictor of Academic Success: Lessons from the Children of Immigrant Families and Black Children,” The Clearing House, 80: 5 (May/June), pp. 223-6.
Diller, Leonard. 2007. Personal conversation. Dr. Diller is a Professor and the Director of the Department of Rehabilitation Medicine at New York University Medical Center in New York City.
Lourque, Angela and Garcia, Helen M. 2002. “Hispanic American and African American Women Scholars,” Race, Gender and Class 7:3 (July), p. 35.
Marcantuono, Joseph. 2007. Personal conversation. Dr. Marcantuono is the Director of the Brain Injury Program and of Neuropsychology & Neurorehabilitation at Children’s Specialized Hospital in New Jersey.
Olkin, Rhoda. 2004. “Making Research Accessible to Participants with Disabilities,” Journal of Multicultural Counseling and Development, 32 (Extra (December)), pp. 332-343.
Olkin, Rhoda and Pledger, Constance. 2003. “Can Disability Studies and Psychology Join Hands?” American Psychologist, 58:4 (April), pp. 296-304.
Pledger, Constance. 2003. “Discourse on Disability and Rehabilitation Issues: Opportunities for Psychology,” American Psychologist, 58:4 (April), pp. 279-284.
Stineman, Margaret G. et. al. 1997. “Measuring Casemix, Severity, and Complexity in Geri-atric Patients Undergoing Rehabilitation,” Medical Care, 35:6 (June), Boston Work-ing Group on Improving Health Care Outcomes through Geriatric Rehabilitation: Proceedings from the Conference May 16-18, 1996, pp. JS90-JS120.
Tate, Denise G. and Pledger, Constance. 2003. “An Integrative Conceptual Framework of Disability: New Directions for Research,” American Psychologist, 58:4 (April), pp. 289-295.
Thomas, Carol. 2004. How is disability understood? An examination of sociological ap-proaches. Disability and Society, 19 (6), 569-583.
UPIAS (1976) Fundamental principles of disability (London, Union of the Physically Im-paired Against Segregation).
Wasserman, David. 2008. Personal conversation. Prof. Wasserman is Director of Research at the Center for Ethics at Yeshiva University in New York City.
Waters, Mary C. (1994). “Ethnic and Racial Identities of Second-Generation Black Immi-grants in New York City,” International Migration Review, 28:4 (Winter), pp. 795-820.
Williams, Gareth. 2001. Theorizing Disability, in Albrecht, Gary L., Seelman, Katherine D., and Bury, Michael (eds.), Handbook of Disability Studies, Thousand Oaks CA: Sage Publications, 123-144.