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

Public Health Education, Research, and Disability Studies:
A View From Epidemiology

Elena M. Andresen, Ph.D.
Professor and Chief, Epidemiology Division
Dept. of Health Services Research, Management, and Policy
College of Public Health and Health Professions
University of Florida Health Sciences Center
PO Box 100195
Gainesville, FLÝ 32610-0195
Email: eandresen@phhp.ufl.edu

Public health and medical research are commonly joined in the minds of scholars in disability studies and in disability communities. As a public health scientist I often balk at being identified as part of medical research and training. But in general, there are good reasons for thinking that the medicine and public health research groups have much more in common with each other, and less in common with disability studies. My goals in this commentary are to provide some brief definitions of my discipline within public health, examples of issues and problems when linking disability studies and public health, and to provide some ideas of solutions to our differences. I am unable to offer quick and acceptable answers for even this highly selected list of issues. But without some initial dialogue and our mutual passionate interest of learning and working together, our barriers and differences will continue to be more prominent than solutions.

Epidemiology is one of the core disciplines in public health. It is always a component of training programs even for students who do not specialize in epidemiology (Institute of Medicine, 1988; 2003). A brief definition of epidemiology is "the study of the distribution and determinants of health related states or events and the application of this study to the control of these problems" (Last, 1995). Further, these terms are defined so that "study includes surveillance, observation, hypothesis testing, analytic research, and experiments... application to control makes explicit the aim of epidemiology -- to promote protect, and restore health" (Last, 1995). While these simple definitions are not particularly inflammatory to concepts accepted in disability studies, public health also incorporates a core concept that the study of populations allows public health scientists to understand how to prevent disease, and disability. The problem with definitions of "prevention" will be taken up later.

In contrast, I provide, here, a definition for disability epidemiology that I hope resonates more fully with disability studies, and acknowledges disability as a state that has a social construct. My definition is still linked to my own discipline, but it helps set the scene for some of the selected issues that I raise later. As I argue at the end of this commentary, public health and disability studies need to continue to seek out and understand each other's terminologies. At this time I propose the following definition:

Disability epidemiology is the study of the distribution, determinants, correlates, and outcomes of disability and application of this study to maximizing the health, participation, and quality of life of people and populations with disability.

This definition makes a distinction between health states and disability: in public health, generally, these are combined to denote something that is a "bad outcome" that should be prevented. However, this separation of health and disability is accomplished in the Healthy People 2010 (Department of Health and Humans Services, 2000) chapter on disability (Objectives Report: Disability and Secondary Conditions; CDC, 2001). Prominent in this document is the following basic assumption about disability:

"Disability is a demographic descriptor rather than a health outcome. It should be used to monitor disparities in health outcomes and social participation. The Americans with Disabilities Act (ADA) provides an important rationale for universal collection of disability status [in data collection]."

This concept has also made its way into research and training publications (e.g., Andresen & Brownson, 2000; Centers for Disease Control and Prevention, 1998; 2002; Lollar, 2002; Lollar & Crews, 2003). While this separation is not novel to disability studies, we in public health are lagging behind and are currently attempting to catch up.

Selected Issues in Public Health Research

The following three examples are selected from among many challenges of communication and collaboration between public health and disability studies.

For many people in disability studies, and certainly for disability advocates, talking about prevention of disability suggests prevention of people with disabilities. "You want to prevent (me)" is a justifiable reaction based on this interpretation. Frankly, most public health scientists have not even considered this distinction, and when confronted, probably recoil in universal astonishment. Ignorance of the possibility of a eugenics interpretation does not let public health off the hook. I recall my reaction the first time someone raised this issue: I was privately indignant that anyone would think the beneficent public health community was so insensitive. But when I tried to define what prevention meant, I recognized there were problems.

It does not mean preventing people or discarding or devaluing people with impairment. But it does mean prevention of incidence and severity of injury, impairments, diagnoses, and conditions that can be a part of the picture of disability in a social context. In public health, research has produced campaigns to raise the nutritional intake of folic acid for women who may become pregnant to reduce the mortality from, and severity and incidence of spina bifida and anencephaly. Public health education and mandatory seat belt laws are seen as important to prevent mortality, and to prevent or reduce the severity of spinal cord injury and traumatic brain injury. This means there will continue to be some conflict between disability and public health communities. When the terminology of prevention is used, it may continue to raise the specter of preventing people with disability.

I also want to emphasize that when public health professionals recoil from the idea that they are talking about "preventing people," they are often insensitive to daily social and built barriers, and the discrimination, faced by people with disabilities. I thought that society had managed to overcome the concept of eugenics until a colleague provide me with a copy of the 2003 New York Times Magazine article by Harriet McBride Johnson with her picture and the question "Should I have been killed at birth?" (McBride Johnson, 2003). She eloquently described her debate with a Princeton professor who advocated the potential for euthanizing babies whose lives he deems to be cognitively impaired enough to not be "persons." This example provides the best "shock" in a course I teach on disability epidemiology and a reality check for those of us who are self-congratulatory about public health ethics, justice, and disability.

Quantitative Population Based Methods-
Public health activities are based on consensus that one of the core functions of public health is assessment. This leads to activities experienced by the general public as statistical reports that describe, for example, how smoking habits are increasing or decreasing, and in what groups, and what the rates of cancer are in different parts of the USA. As a discipline, epidemiology is especially dependent on statistics and large population-based research projects. We do not contribute in meaningful ways to the study of individuals. We are often challenged by studies of phenomena that require deep social and behavioral theoretical underpinnings. Our best etiological research is conducted when we have crisp, precise classifications of exposures and outcomes. For the community of disability scholars, this description will only hint at why we may find ourselves speaking different languages in a vigorous discussion of "risk" and "cause" in disability. People with disability remind us that "(we) are diverse." Diversity begets statistical heterogeneity in epidemiologic analysis and that reduces our ability to make secure statistical inferences. That is a particularly unhappy explanation of why epidemiologists cannot answer many questions about disability, health, and disability experience. But with advance warning about the limits on our side, perhaps some scholars in disability studies will be willing to collaborate with us anyway.

Participatory Action Research-
Training for epidemiologists tends to recommend a very "hands off" policy regarding the subjects of research. The notion that people with disabilities should be part of the research team may make epidemiologists uneasy. "Nothing about us without us" (Charlton, 1998) does not resonate with our discipline. But the field of epidemiology and its ethical and disciplinary goals has evolved. A fairly recent set of guidelines (American College of Epidemiology, 2000) discuses the potential requirement of involving community representatives in our research. The language is cautionary "To the extent possible and whenever appropriate..." but goes on to raise the issue of public trust, and "unempowered communities." Even more recently, however, the field of public health has embraced the ethics of including communities and subjects' perspectives in research. This is described as community-based participatory research for scientific and ethical reasons (IOM, 2003), although it is interesting that the example of disability is not included. I mentioned earlier that public health is playing "catch-up" and this example of the new "paradigm" in public health research and interventions makes that point. It also suggests we are finally entering a period where true collaboration between disability studies and public health is a realistic endeavor.

Public Health Training and Academic Expectations

I have described problems relating to communication and terminology between the disability and public health scholarly communities, differences in methodologies and perspectives, and a few solutions or ongoing differences that might be resolved by joint academic training and collaborative experiences. My intent here is to provide more explicitly some of the issues regarding training and the academic culture in which many public health researchers work.

Training and credentialing in public health is largely based on criteria of the Association of Schools of Public Health (see http://www.asph.org/) and consensus groups regarding expectations of competencies (e.g., Institute of Medicine, 1988; 2003). Training includes key disciplines like epidemiology and biostatistics, and more recently includes competencies in aspects of practice and emerging issues, for example genomics and informatics. Public health usually includes either a masters of public health (M.P.H.) or doctoral degree (Ph.D or Dr. PH). While schools and programs in public health produce many practitioners in public health, one of the criticisms of the field continues to be that programs produce more academics and researchers (e.g., Institute of Medicine, 1988), whose links to practice and communities can be loose, when they exist at all. While this is changing, but in epidemiology, especially, programs are likely to evaluate the success of their program and their graduates based on their research career trajectories, not their service and practice activities.

Epidemiologic methods continue to evolve like they do in any science, requiring more and more training in statistical methods, molecular and genetic information, and familiarity and practice with computer applications and methods. Currently, public health training programs are encouraged to provide opportunities and competencies concerning communities, especially disadvantaged groups. In practice, this usually includes training and examples based on race and ethnic groups in the USA. In an evolving discipline, important content like disability awareness may be left behind or relegated to elective training. There are a number of efforts underway to incorporate disability in public health training (e.g., the disability and public health curriculum projects of the Centers for Disease Control and Prevention (CDC, 2004)). But the integration is not yet complete, and it will require the interest and participation of scholars in disability studies in order to achieve a greater level of maturity. Joint training is the ultimate solution. Considering the expectations of different disciplines, this suggests a fairly prolonged initial academic training (e.g., adding an M.P.H. to a doctorate in disability studies), or substantial retooling of more senior scholars by sabbatical or fellowship experiences.

The problem of how to collaborate and communicate among disciplines also arises in considering academic careers and expectations. Typically, success is measured in academic circles by a steady progression through academic levels and by tenure. For most institutions, review of a candidate's success for promotion includes a combination of the elements of research (and scholarship), teaching, and service.

Public health academic systems lean heavily on the expectations of traditional academic medicine. This means that success in research, by grants (especially a preference for RO1 projects funded by the National Institutes of Health) as well as publications, matters greatly in regards to promotion. In my setting, for example, promotion is reviewed and awarded scholarship depending on the number of articles a candidate has had included in peer-reviewed publications, candidate's publication in journals with high impact and prestige, and the number of citations to a candidate's first-authored work. Journal Citation Reports (Institute for Scientific Information, 2002) helps provide one important meter. An "impact factor" is figured from the average number of times that articles in the journal are cited. The count of citations to an article (or a first author) is also available via many electronic library resources (Thompson ISI Science Citation Index, 1995-2003). Personally, I need the help of a librarian to document most of this. But the list below gives just a hint of what an academic approaching tenure and promotion may face.

Examples of "disability" publications and their impact factor 1
* American Journal of Occupational Therapy 0.55
* Assistive Technology 0.92
* Archives of Physical Medicine and Rehabilitation 1.33
* Disability and Rehabilitation 0.89
* Disability and Society 0.69
* Disability Studies Quarterly - - - 2
* Journal of Developmental and Physical Disabilities 0.16
* Journal of Intellectual Disability Research 2.22
* Journal of Affective Disorders 2.18

1 Based on 2002 Journal Citation Reports, Science and Social Science editions
2 Not listed in Journal Citation Reports

Disability Studies Quarterly is not rated, and its contents are not available in my university's library electronic systems when I searched for relevant articles. Disability and Society is rated by impact, but does not rate as highly as more traditional rehabilitation and medicine/psychology journals. Considering the elements of traditional academic success, it may be easier to satisfy personal goals and interests concerning disability studies after promotion (and/or tenure) than during the process. My personal decisions have lead me to play the publication game according to the expectations of my academic setting and add in the broader issues of disability studies more gradually over time. I occasionally list my favorite disability scholarly work in a service activity, or in "other" publications, when these activities do not fit into traditional count categories in my annual review. However, that is a decision that is self-serving. It also is potentially inflammatory to researchers and academics whose primary scholarship comes from their life-long important contributions to disability studies and advanced thinking in disability issues that provide depth of meaning, but not large citation counts and impact factors. I raise it here because when scholars from different academic communities and research settings collaborate, it is important to know, respect, and accept our career differences and our individual decisions. Respect comes from sharing experiences, good ideas, and the pleasure of learning and teaching each other. It is not based on the presence or absence of the "right" publications.

The Future

I have raised questions and offered a few solutions concerning the future of collaboration and meaningful exchange between disability studies and public health. Two key suggestions may help the future progression of our alliance. First, I have argued for joint training. We need funding opportunities to support these goals. Second, there is an implicit need for transdisciplinary research teams to resolve and/or solve some of the problems and barriers to collaboration. Public health programs are being asked to incorporate transdisciplinary training (Institute of Medicine, 2003), but there is not a disability map in this general call for transdisciplinary competence. In order to move forward, we need to learn each other's methods and terminology, thus establishing a more equal partnership. We will be successful when we also generate new questions.


Andresen, E. M., & Brownson, R. C. (2000). Disability & health status: Ethnic differences among women in the United States. Journal of Epidemiology and Community Health, 54, 200-206.

Center for Disease Control and Prevention. (1998). Use of cervical and breast cancer screening among women with and without functional limitations--United States, 1994-1995. Morbidity and Mortality Weekly Report Surveillance Summaries, 47, 853-856.

Center for Disease Control and Prevention. (2001). Healthy People 2010, Objectives Report (Chapter 6: Disability and Secondary Conditions).

Centers for Disease Control and Prevention.(2002). State-specific prevalence of obesity among adults with disabilities, 1998-1999. Morbidity and Mortality Weekly Report Surveillance Summaries, 51, 805-808.

Centers for Disease Control and Prevention. (2004). National Center on Birth Defects and Developmental Disabilities. Disability and Health Team. Implementing and testing a disability and pubic health curriculum. Web site. http://www.cdc.gov/ncbddd/dh/DHactivities.htm#disabilitycurriculum [Retrieved August 3rd, 2004].

Charlton, J. I. (1998). Nothing about us without us: disability oppression and empowerment. Berkeley: University of California Press.

Department of Health and Human Services. (2000). Healthy People 2010. Washington, D.C. 2000. Available from URL: http://www.health.gov/healthypeople

Institute for Scientific Information. (2002). Journal citation reports on microfiche. (Science and Social Science eds.):JCR. Philadelphia, PA: Author.

Institute of Medicine. (1988). Committee for the Study of the Future of Public Health. The future of public health. Washington, D.C., National Academy Press.

Institute of Medicine. (2003). Who will keep the public healthy? Educating public health professionals for the 21st century. Gebbe K, Rosenstock K, & Hernandez LM, Eds. Washington, DC: National Academy Press.

Last, J. M. (1995). A Dictionary of Epidemiology. Third edition, Oxford University Press, 55-56.

Lollar, D. J. (2002). Public health and disability: emerging opportunities. Public Health Reports, 117, 131-136.

Lollar, D. J., & Crews, J. E. (2003). Redefining the role of public health in disability. Annual Reviews in Public Health, 24, 95-208.

McBride Johnson, H. (2003, February 16). Unspeakable conversations or how I spent one day as a token cripple at Princeton University. The New York Times Magazine, pp. 50-55, 74, 78-79.

Thompson ISI Science Citation Index Expanded. (1995-2003). [Datafile]. Retrieved June 4, 2003, from http://isi4.isiknowledge.com/portal.cgi/wos

Author note

This work was supported, in part, by funding from the Centers for Disease Control and Prevention (CDC; grant # U48/CCU710806) for the Methods Core of the Saint Louis University Prevention Research Center, and a grant to Boston University from the Association of Schools of Public Health and the CDC (ASPH; grant #S1018-19/19) entitled Health, disability and the public health curriculum. Come ideas presented here were included in an earlier form in a chapter, and some of the contents of this commentary are derived from two public presentations, listed below.

Andresen, E. M. (2003, December 18). Disability epidemiology: introduction to the discipline and its methods. University of Florida College of Public Health and Health Professions, Gainesville, Florida.

Andresen, E. M. (2004, June 3). Disability studies and public health education and research: issues and challenges. Society for Disability Studies Annual Meeting, St. Louis Missouri.

Andresen, E. M. (in press). Epidemiology and biostatistics. In: Allen, D. (Ed.), Disability and public health. Atlanta: Centers for Disease Control and Prevention.