REHABILITATION SCIENCE AND DISABILITY STUDIES: ARE THEY COMPLEMENTARY? Katherine D. Seelman, Ph.D. Associate Dean and Professor School of Health and Rehabilitation Science University of Pittsburgh and Visiting Prince Fellow Rehabilitation Institute of Chicago September 5, 2001

Rehabilitation Science and Disability Studies Do they supply mutual needs: Do they offset mutual lacks?

Definition: Rehabilitation Science “The field of study that encompasses basic and applied aspects of the health sciences, social sciences and engineering to restore functional capacity in a person and improving their interactions with the surrounding environment…understand the nature of the enabling-disabling process….

Definition: Disability Studies “A multidisciplinary approach to the analysis of the dynamic/evolving social, psychological, economic, political, legal, biomedical and technological context of people with disabilities in society…involves the empowerment and evaluation of the experiences of disabled people.”

Two Windows on Disability Rehabilitation Science lacks knowledge that is subjective and social, sufficient to explain the experience of the patient/client. Disability Studies lacks knowledge that is objective, sufficient to support a scientific base for medical treatment.

Two Windows on Disability: Professional and Patient/Client Health professionals can develop a view of disability that is at substantial variance from its reality for many disabled people. Disabled people can develop a view of health care that is at substantial variance to its value for them.

Different Roles: Health Care Professionals The role of health care professionals is associated with knowledge that is objective, scientific and derived from fields related to Rehabilitation Science. Physicians make decisions important to disabled people, including decisions about life and death and prescriptions for long term care interventions such as assistive technology and physical therapy.

Different Roles: Patient/Client The role of the patient/client is associated with subjectivity, emotion and personal experience and is related to Disability Studies. Experientially-based knowledge is often under valued..

Example: M.D. and Disabled Patient: 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.”

M.D. as a Disabled Patient “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.”

M.D. as a Disabled Person “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.”

Studies of Quality of Life Neurologists were significantly more likely to believe that physical impairment was an important determinant of quality of life than were disabled people. 92 per cent of people with quadriplegia reported being glad to be alive while only 18 per cent of emergency service personnel believed they would be glad to be alive.

Disabilities do not have the same social consequences as illnesses. Social Consequences of Illness and Disability: Are They Different?

Social Consequences of Disability and Illness People with illnesses are usually cured. People with disabilities frequently live with disabilities for life.

Social Consequences of Disability and Illness: Are They Different? People who are ill are patients who try to get well. People who are ill may be temporarily relieved of their family and work roles. People with long- term disability are often not ill. People with disabilities cannot be permanent patients who forfeit their family and work roles.

Social Consequences of Disability and Illness: Are They Different? People who are ill rarely have to radically change their lifestyles, i.e., where they live, their friends, their job. People who have acquired disabilities may find they need support to learn how to live a new life.

Implications for Attitudes, Research, Training and Practice Identify holistic paradigms and models that inform attitudes, research, training and practice. Incorporate into training and practice, disabled people and Disability Studies. Identify and incorporate into research, problems that are important to disabled people.

Paradigms and Models Biophysical model Social model Integrative model

Integrative Model: Important Reports and Studies World Health Organization: ICIDH-2 Institute of Medicine: Enabling America National Institute on Disability and Rehabilitation Research: Long Range Plan Centers for Disease Control: Healthy People 2010

Training for Whom? Medical students, practitioners Allied health care students and practitioners, including nurses, pharmacists, physical therapists, occupational therapists, audiologists and rehabilitation engineers Disabled people

Training Initiatives Incorporation of Rehabilitation Science and Disability Studies into curricula development: Primary Care Clinical Prevention Long Term Care and Rehabilitation Emergency Services

Training At the level of the individual patient At the Health Care System level At the Public Policy Level

Integrative Framework for Research, Teaching and Learning about Disability in Medicine and the Health Sciences Knowledge based in Rehabilitation Science and Disability Studies, especially ICIDH-2 Development of Integrative paradigm and models Development of curricula, internships and practicum