Disability Studies Quarterly
Fall 2004, Volume 24, No. 4
Copyright 2004 by the Society
for Disability Studies

A Slowly Evolving Paradigm of Disability in Public Health Education

Katharine Hayward, M.P.H.
University of California, Los Angeles
Email: khayward@ucla.edu

As a person with a disability coming into the world of Disability Studies and someone who has been trained as a public health professional, the theme of disability studies in education of public health professionals is of particular interest to me. For this theme issue of DSQ, two important questions were advanced in the call for papers: 1) Can disability studies, a field rooted in a social model of disability rather than a medical model, retain its integrity in the context of health related professional education? 2) Can disability studies be integrated into current curricula while maintaining the goals of public health? My short answer to both these questions is "yes." The longer and more complicated response follows. The purposes of this commentary are to provide an understanding of the conflict between public health and disability, discuss my personal experience as a student in public health, point to the evolution of a public health agenda that includes people with disabilities, and provide suggestions for both fields to recognize and contribute to each other.

Conflict between Public Health and Disability

Throughout the history of public health as a discipline, there has been an inherent conflict between the stated goals and philosophy of public health and people with disabilities. The primary focus of public health is prevention of many of the conditions and events that contribute to disability. This focus often includes prenatal care to promote maternal and child health, activities to prevent chronic health conditions, and more recently, prevention of injuries and violence. While prevention is not an unworthy effort, this approach has neglected people living with disabilities. In its worst case, public health campaigns have alienated people with disabilities.

Past public health campaigns have played upon emotions of fear generated by possible disability to advocate desired health practices. Campaigns against drinking and driving, for example, have used such advertisements as one showing a symbol for "disabled parking" with the text, "Drink and drive and you could have the choicest parking spot in school. But who cares? You'll lose your spot on the football team. The marching band. The prom dance floor...". This symbol implies accessibility, but is instead used to relay the message that your quality of life plummets if you have a disability. A related advertisement shows a woman sitting in a wheelchair at the bottom of a staircase, gazing toward the door at the top of the stairs. The caption reads, "that 'One for the road' could change your road to the future. It only takes a second to ruin your life" . Another anti-drunk driving advertisement pictures a teenager in a varsity jacket in a wheelchair with the heading, "The drunk driver got one year. She was sentenced to life." Similarly a seatbelt ad states, "If you think seatbelts are confining, think about a wheelchair" (Wang, 1992).

Upon reading about such public health campaigns I felt my own sense of conflict. What was I doing in a field that promoted prevention of someone like me? What I am doing and what I strive to do as I continue to work in public health is provide that much needed criticism and remind others of the productive and worthwhile lives of the millions of people with disabilities living in various communities.

Public Health Curriculum and Disability

In preparation for a Centers for Disease Control and Prevention conference on "'Health, Disability, and Independent Living in the Graduate Public Health Curriculum,'" a national study was conducted with 30 of the 35 schools in the Association of Schools of Public Health. Results indicate that the majority (73%) of schools offer graduate-level courses that significantly study disability. Of those, 60% (18 schools) reported having one or more graduate level courses dealing exclusively or nearly exclusively with disability. Another 10 schools reported systematic treatment of disability in other components of the program's curriculum. Fewer schools (3) reported having a disability concentration. Approximately one-third of the schools (9) stated they planned to increase coverage of topics related to disability. These findings are encouraging, suggesting that most schools do recognize disability in their curriculum. The issue then becomes one of how disability is addressed. Is it dealt with primarily as impairment, or as impairment experienced within a physical and social environment?

My Experience as a Public Health Student

The study mentioned above provides a general description of what is happening in American schools, but I would like to address the inconsistencies I personally encountered in the treatment of disability throughout my public health education. I entered a Masters program in public health knowing very little about what public health was. Most people recognize public health as the individuals or agencies that monitor diseases and shut down restaurants for health reasons. While these are part of public health, it encompasses much more. Public health is an interdisciplinary field that draws from numerous fields of studies, and encompasses multiple areas of concentration. For example, my focus was on community health, but my Master's education also required that I take courses in biostatistics, epidemiology, health services, and environmental health. It was important to understand the complexities of health: how it is measured and monitored, how policies affect it, how the physical environment affects it, and how social networks and the social environment affect it.

During my first year, I mainly took the required courses that included a foundational class on public health. I felt relieved when learning health was not defined by the absence of disease, but also by the quality of one's life. I remember clearly the idea that health was not an end, but a means to an end. Health was not the ultimate goal, but rather a way in which one could do other activities they desired to do. I found this to be an interesting insight into the underlying meaning of the adage, "As long as I have my health." I then realized, it is not health people value per se, but their ability to do what they want and reach their own personal goals.

One of the aspects of public health I have always enjoyed is its ability to draw upon multiple fields of knowledge in an effort to better understand an individual's life and ways to improve it within that particular individual's reality. In every course I took I was challenged to analyze health from various perspectives. It was during my second year in the program I began to notice disparities. I was at a point where I had the opportunity to select courses I was interested in along with the courses needed for my specialization. This venture opened my eyes to the variety of issues that fall within public health, and areas that have largely been ignored within the public health curriculum. In particular, I felt that disability was not being considered as a factor in the multitude of factors that we as public health professionals evaluate. I was being encouraged to analyze health by looking at factors of gender, race and ethnicity, age, sexual orientation, but never disability. I don't wish to suggest disability was never addressed, it was. However, disability came into the analysis when focusing on an aging population. While I do feel aging is an important issue, this was not my experience nor is it the experience of many other individuals living with a disability. Disability lies on a continuum in which people fall at different times in their lives and under different situations. A focus on aging facilitates understanding of only one end of the continuum.

While I am critical of the way disability is often lacking in public health curriculum, I would like to speak of the positive experience of the faculty's response to my criticism. During my second year, as I noticed this disparity I began to focus all of my papers on people with disabilities. It was also at this time I was accepted into the Ph.D. program. I was motivated to obtain a Ph.D. so that I would have the skills necessary to develop and teach the courses I felt were lacking in the area of disability and public health. However, I again encountered many difficulties when looking for professors with whom to collaborate. It wasn't that professors didn't find my focus on disability to be interesting or important, but that many I approached felt uninformed about the issues and unable to give me appropriate guidance. Unlike many other topics in public health, there was no faculty member who had research interests in disability unrelated to an older population.

It was during a leadership and social movement course I found a potential advisor for my Ph.D. His response was one I had heard before about not being very knowledgeable on the subject, but the comments afterwards were different. The next comments were ones validating my criticisms and comments of support that what I wanted to do was important. This was one of the first times someone didn't just say, "that's interesting, but I can't help." It was someone acknowledging their lack of expertise, but saying, "public health should care about this and I will support you in forging the way in this area." It is this support, and the support I found later from other professors, that provides the necessary encouragement during difficult times.

It has been difficult at times not having a faculty member with expertise in the area of disability. I have had to find disability experts in other ways--through work, through research, and through engaging in disability ListServs and associations. Having voiced my interests, I also now have others keeping an eye out for me. While I may have started out feeling very alone, I now have many colleagues both in public health and the disability arena who constantly send me e-mails and refer me to others with similar interests.

Public Health's View of Disability, the Medical or Social Model

One of the major concerns and critiques of public health has been about how disability is discussed, whether it is from a medical or social model perspective. The medical model is one that took prominence in the 19th century as significant advances were made in medicine. Advances in medicine, particularly identification of the germ, stressed rationality over earlier models stressing a religious origin (Lupton, 2000). From a medical model perspective, a person with a disability is viewed as deviating from biomedical norms of function directly resulting from a disease, trauma or other health condition (Bickenbach et al, 1999). The focus on the shift of disease as the agent of disability increased the importance of the role of the physician and made the person with a disability dependent upon the physician for a "cure."

In contrast, the social model of disability begins to politicize disability by focusing on the relationship between an individual's impairment and the nature of the environment in which the individual functions. This model does not view disability in terms of any impairment. Instead, disability is viewed as a social construction shaped by physical characteristics of the environment, cultural attitudes and social behaviors, and the institutionalized rules, policies, and practices of private and public organizations (Bickenbach et al, 1999; Hahn, 2000; Harlan & Robert, 1998; Scotch, 2000). Whereas prior models of disability such as the medical model attached a specific label to people with disabilities by those without disabilities, the social model addresses how the reactions of others to people with disabilities frame their position in society (Link & Phelan, 2001).

In my experience, public health addresses disability from both a medical and social model, not one over the other. Public health does consider disability at the individual level, and recognize the real pain, both physical and psychological, that may be associated with impairment (Oliver, 1996; Williams, 2001). However, public health also views disability as an interaction between the individual and her physical and social environment. The majority of theories and models used in public health reflect how individual behavior is affected by the broader physical and social context, such as the level of support received from family and friends, existing norms and to what extent others believe them to hold true, and the impact of social systems on individuals' decisions and behaviors.

An example that demonstrates public health's progression in its view of disability is the way the World Health Organization (WHO) has delineated terms of impairment and disability. The International Classification of Impairments, Disabilities, and Handicaps (ICIDH) was originally developed in 1980 to provide a framework for the three divisions of impairment, disability, and handicap. In its early version, the ICIDH associated impairment with the body systems and the corresponding functions affected, disability was viewed as the limitations in one's ability (i.e. the ability to walk, see, hear, communicate), and handicap was used to describe the disadvantages an individual experienced in their environment such as in employment and independence. Not surprisingly, many disability advocates opposed this document for its usage of terms such as handicap, and its primary emphasis on functions of the body. While the document did briefly mention the environment as part of the handicap definition, the majority of the document represented a medical approach to understanding the process of disability. In 1993, the WHO began revising the International Classification of Impairments, Disabilities, and Handicaps. This time WHO included disability groups from around the world, along with professional and public health representatives from agencies such as the National Institutes of Health, the American Psychological Association, and the Department of Education. The resulting document, International Classification of Functioning, Disability, and Health (ICF) maintained body function and activity components, but shifted the focus the environment as always interacting with people to facilitate or hinder their participation in life activities, often to a greater extent than limitations associated with their physical, emotional, or mental conditions. The ICF includes four components: 1) body functions, which encompasses body structures as the anatomical parts of the body and impairments as problems in body functions or structures, 2) activity is the demonstration of a task or action, 3) participation is involvement is a life situation, and 4) environmental factors comprise of the physical, social, and attitudinal contexts in which people live.

This new document illustrates how public health incorporates both the medical and social models of disability. It does still maintain a body dimension, but moves beyond it to more accurately reflect how the environment presents as many limitations or opportunities for an individual with a disability. I know for some, the inclusion of the body functions and activity components will be a point of contention. For me, as an individual with a disability that is largely associated with pain, I find a definition that encompasses impairment with an emphasis on the environment as getting closer to reflecting my experience.

Evolution of a Public Health Agenda: Healthy People 2010

The agenda of Healthy People 2010 represents another example of how public health is beginning to explicitly address the lives of people with disabilities. Healthy People is a document that sets the health agenda for the nation for a ten- year period. It is used by the federal government, states, and communities to set priorities in improving and monitoring health. Healthy People is also used in foundational public health courses to exemplify the current work in public health. Healthy People 2010 is the first version to address the health of people with disabilities. "Disability and Secondary Conditions" is one of the 28 chapters representing the various focus areas. The goal in this chapter is to "promote the health of people with disabilities, prevent secondary conditions, and eliminate disparities between people with and without disabilities in the U.S. population". Specific objectives set out in this chapter address issues of including standard questions in surveillance instruments to identify people with disabilities, reducing feelings of depression, increasing social participation, increasing life satisfaction, eliminating disparities in employment, and reducing the number of people with disabilities in institutions. Healthy People 2010 in its introduction acknowledges that public health has not adequately dealt with the health and well-being of people with disabilities in the past because of many of the reasons cited earlier.

This version of Healthy People begins the necessary process of documenting and focusing on a group that is greatly affected by public health policies. In this last version members of the public had an opportunity to comment on a draft of the document. This represents an opportunity for those with an interest in disability to voice their opinion and help shape a national health agenda.

The Need to Incorporate Disability Studies into Public Health

While there has been a difficult past between public health and people with disabilities, there is an increasing opportunity for the two fields to work together to complement their strengths. Both disability studies and public health are interdisciplinary fields. While public health can sometimes focus on impairment or disease as in the medical model, it also approaches health in ways consistent with the social model. The greatest contrast between the two fields is that disability is not consistently addressed in public health as it is in Disability Studies. However, public health is moving in a direction that is acknowledging the importance of addressing the lives of people with disabilities as seen in revised definitions of disability and the Healthy People 2010 objectives.

My public health education encompassed the tools with which to discuss disability in a meaningful way. The problem for me is that the discussion of disability is not always taking place. Public health has the foundations of theory and practice that can contribute to the lives of people with disabilities. What needs to happen is for disability to be explicitly discussed within these foundations. To me, it is a natural and necessary move for those involved in the fields of Disability Studies and public health to collaborate. Specifically in public health we need to: infuse a discussion of disability into public health courses along with other demographic variables; develop and offer courses focusing on the continuum of disability, not just at the childhood and elderly ends; and we need to identify and cultivate the students and faculty to provide a disability focus within public health education. Those in Disability Studies and public health can also work towards building partnerships with each other through activities such as reading each other's journals, joining each others associations (i.e. the American Public Health Association and Society for Disability Studies) and attend each other's conferences. How can we afford not to work together when so many of the issues that affect people with disabilities are linked to public health research and policies?


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