Trends in Rehabilitation and Disability: Transition from a Medical Model to an Integrative Model (part 1)
By Kate Seelman, Ph.D., University of Pittsburgh (kds31@pitt.edu)
Introduction
The purpose of this lecture is to introduce and explore four models of disability: the traditional model, medical model, social model, and integrative model (Seelman, 2002). The four models often appear in sequential stages in the history of many industrialized countries. With the exception of the integrative model, the knowledge base for each model tends to exclude that of the other models. Throughout this presentation, the models are illustrated by corresponding policies, practices and research, using country-based examples mainly from the United States and, to a lesser extent, Japan. These models have implications for professional education and training of people with disabilities. Conclusions and recommendations will therefore address professional education and training people with disabilities as well as international and country-based policies, practices, research, and collaboration.
Trends
A number of international trends illustrate the importance of re-examining disability models that are operative in countries and international organizations. The first trend involves conflict between health professionals who identify with the medical model and people with disabilities who identify with the social model. Throughout the world, people with disabilities, who have formed a Disability Movement, are criticizing the medical model of disability and demanding greater participation in decision making (Basnett, 2001). The introduction of the World Health Organization's International Classification of Functioning, Disability and Health in 2001 suggests that a more integrative model may be emerging within the international community (World Health Organization, 2001). The integrative model adjusts for some of the criticisms of the other models and is already influential in country-based policy, practice, research and professional training http://www.dpi.org/en/resources/topics/topics-convention.htm.
The second trend involves technology. Increasingly, access to technology is associated with human rights as reflected in the Americans with Disabilities Act of 1990 (http://usdog.gov/crt/ada/adahom1.htm), the proposed United Nations Convention on the Rights of People with Disabilities (http://www.dpi.org/en/resources/topics/topics-convention.htm), and the World Summit on the Information Society (http://www.itu.int/wsis ; http://www.geneva2003.org). Policies, practices and research in universal design and design for all are examples of this trend. Human rights and technology are associated with demands to make mainstream systems and products, such as communication systems, transportation systems, and cell phones, accessible. However, accessibility features in mainstream systems and products may be regarded as "social add-ons"--not competitive in the global marketplace. Human rights and technology are also associated with policies, practices and research in special or assistive technology for individuals (e.g., wheelchairs or hearing aids). Interface problems for individuals with disabilities and technology and interfaces between specialized and mainstream technology have generated interest among researchers. The Trace Research and Development Center at the University of Wisconsin is one of a number of centers that conduct research on interfaces (http://trace.wisc.edu/world/gen_ud.html).
A third trend involves rehabilitation research itself. To justify payment, rehabilitation researchers across disciplines are called upon to show evidence of outcomes, efficacy, and effectiveness of assistive technology (Fuhrer, 2001). A fourth trend involves the struggles of social welfare program administrators to keep benefit programs solvent while serving growing numbers of people with disabilities, especially older people. Countries are adopting a mix of social welfare, civil rights, and other policies to address disability issues (Van Oorscot & Hvinden, 2001; Zeitzer, 2002). Countries are struggling to contain costs of public welfare systems, but have often failed to adopt policies that may defer, lessen or negate the need for expensive institutionalization, such as accessible mainstream systems and products. Finally, the fifth trend is poverty--a barrier to the support of disability programs in developing countries where the majority of people with disabilities live. Many cultures continue to use a traditional model of disability. In the absence of scientific and health infrastructures, disability policy and practices may be based almost exclusively on culture and religion (Barnes & Mercer, 2003; Coleridge, 1993; Ingstad & Whyte, 1995).
Models Of Disability
Four models of disability are explored in this section: the traditional model, medical model, social model, and integrative model. The following factors are considered for each model: a) knowledge base, b) roles, c) rules and relationships, d) temporal and spatial parameters, and e) bias. Corresponding policies, practices and research are identified for each model.
The Traditional Model
The traditional model is based on culturally and religiously-determined knowledge, views, and practices. Depending on cosmology, social organization and other factors, cultures show a broad range of perspectives which place people with disabilities on a continuum from human to nonhuman. For example, some cultures practice infanticide, rejecting the humanity of disabled infants. The roles people with disabilities may assume within a given culture range from participant to pariah (Barnes & Mercer, 2003; Ingstad & Whyte, 1995). When persons with disabilities are devalued, they may be perceived as demonic or unfortunate, and often take on the role of an outcast (Coleridge, 1993). The bias of the traditional model is cultural relativity. Objective, scientifically-based knowledge is not associated with this model.
Across cultures, people with disabilities have been valued differently. In his presidential address before the American Association of Physical Medicine and Rehabilitation, Thomas E. Strax, M.D. made the following observation:
From the beginning of time, humankind has wrestled with the paradox of what to do with people with disabilities. In ancient times, they were simply put to death. They were a burden on the tribe. In ancient Greece, there were 2 cities. Sparta removed the weak and the elderly for the good of the rest. In Athens, the warrior class protected the weak (Strax, 2003).
The Medical Model
The medical model is based on scientific views and practice, typically in the medical and health knowledge base. The "problem" is located within the body of the individual with a disability. The context of the medical model is the clinic or institution. Persons with disabilities assume the role of patient, a role that may be of either short-term or long-term duration depending on several factors, including the individuals' condition, policies related to institutionalization and community supports, and professional and social attitudes about disability. Authority lies with professionals. The bias of the model is the bio-medical perception of normalcy and the narrow band of legitimate knowledge, usually medical and health-related. Explanation of disability is reduced to the impairment level. The perspective of the person with a disability and social factors are not routinely within the knowledge base of the medical model.
Worst and Best Practices
In the West during the twentieth century, examples of worst and best medical research practices for people with disabilities can illustrate the strengths and weaknesses of the medical model. Worst practice examples can be drawn from most countries and regions.
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Willowbrook Experiments, U.S.: This study was designed to follow the natural progression of a disease--in this case viral hepatitis. Children with disabilities were intentionally infected with the virus and then studied during the progression of the disease. A particularly disturbing aspect of the research was that it was reviewed and approved by the New York State Departments of Mental Hygiene, Mental Health, the Armed Forces Epidemiological Board and the New York University School of Medicine, in addition to the Willowbrook School. Although parental consent was given, the consent was based upon the school's declaration that there was room for new students at the school only in the experimental unit (http://members.aol.com/bercar/caramain.htm).
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Most countries and international organizations also have many examples of best practices within the medical model. These include:
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Breakthroughs in biomedical and technological sciences and clinical applications that have saved lives and extended the lifespan of individuals with disabilities (National Institute on Disability and Rehabilitation Research, 1999)
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International Classification of Impairments, Disabilities and Handicaps (ICIDH) (International Classification of Impairments, Disabilities, and Handicaps, 1980)
After the Second World War, the international community adopted reforms and provided guidelines for research. These policies include the Nuremberg Code of 1947, the United Nations Universal Declaration of Human Rights of 1948, and the World Medical Association Declaration of Helsinki of 1964. Later, some countries began to adopt policies such as institutional review boards to protect research subjects.
The influential ICIDH, which identified the cause of disability within the individual, was adopted by many users including policy-makers (social security benefits, employment, occupational health), demographers, epidemiologists and statisticians (surveys), and health-planners (utilization, resources). Even before the adoption of the ICIDH, health professionals created policy and designed surveys and utilization practices within the medical model. Throughout the twentieth century, countries adopted general social welfare and health policies (which usually included people with disabilities) as the first stage in a series of disability policies which would later include general and specialized education, employment, and accessibility policies for disabled people. Examples of social welfare and health policy include Japan's Social Insurance System developed beginning in 1922 and the Social Security Act adopted in the United States in 1935 (Miyatake, 2000).
Measurement Tools
Development and use of research measurement tools, such as the Functional Independence Measure (FIM), and concepts such as the normal curve reinforced the medical model. These tools were designed to measure impairment at the body level with the goal of curing the cause of the impairment--or at least minimizing performance difficulties. The test sites are usually clinics, rehabilitation centers or other controlled sites. The following is illustrative of measurement bias:
The distance walked is a key component of the health-related quality of life measure for the FIM. The measure focuses on the independent function of the person without contextual supports.
Professional Training
The knowledge base used to educate health professionals is rigorous and routinely limited to medicine and the health sciences. Therefore, health professionals may develop a view of disability that differs substantially from the reality of many disabled people. The following is a quotation from a medical doctor before he became disabled and afterward:
[I began] to examine his nervous system...felt a sense of horror come over me. You can't feel anything here on your shoulder? You can't move your legs? I next met this man in a spinal cord unit in 1985 as I was pushed to the computer next to him in occupational therapy. A few months earlier, I had severed my cervical spinal cord playing rugby and I was a quadriplegic--slightly more impaired than was my former patient. Now, 15 years after becoming disabled, I find myself completely at home with the concept of...being me. Now I know that my assessment of the potential quality of life of severely disabled people was clearly flawed (Basnett, 2001).
Disabled people may develop a view of health care that is very different from the one held by professionals. While professionals may view people with disabilities as patients, people with disabilities often accept their disabilities and move away from the patient role to resume life roles of worker, student and parent within the community.
Legacy of the Medical Model
The medical model is based on a narrow range of views and practices involving health and welfare. Research and research tools are useful for medical purposes but not as useful for social purposes, such as measuring accessibility and participation. Professional education and training, to the extent that it has not incorporated information about quality of life and accessibility, has resulted in a "dual perspective" situation. Therefore, there is a widening gap of understanding between professionals and patients who are at some stage of transformation and recovery (Gabard & Martin, 2003).
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