“Ask Not Only What Public Health Can Do For Disability, Ask What The Disability Experience Can Do For Public Health.”


René I. Jahiel, MD, PhD

École Libre des Hautes Études, New York

and University of Connecticut Graduate Program in Public Health, Farmington


The interaction between the American Public Health Association (APHA) and its Disability Section (DS) is an important microcosm of the interaction between the public health and disability communities in our society. The two communities have not interacted as much as needed for the good of both of them. For examples, there is still very little teaching about disability in schools of public health. The responsibilities of state and local public health agencies are splintered among departments such as  MRDD, mental health, chronic care, or  children’s health. The NIDRR is a division of the US Department of Education, rather than of the US Public Health Service. The reasons for this estrangement are probably multiple. Public health is conceptualized in the framework of disease, with mortality and morbidity statistics to guide it, while the disability communities have long rejected the concept that disability is akin to disease. Further, public health has had a long history of devious practices regarding people with disabilities, such as segregation into institutions, unscientific eugenics, and more recently poorly planned de-institutionalization, and a concept of normalization that puts a burden on people in situations of disability and does not recognize their right to be different. Public health practice has given far more emphasis to primary or secondary prevention than to tertiary prevention, and some forms of primary or secondary prevention have been criticized as an attempt to eliminate differences of those targeted, especially prevention of birth of those who are different.

          Yet, there has been a rapprochement between the two fields since the 1970s.  The Supplemental Security Income (SSI) program enacted in the mid-70s entitles its disabled recipients to  Title 19 (Medicaid)  for a broad array of public health services. From 1990 on, the American with Disabilities Act has made it illegal to discriminate against people with disabilities in public health services and State health-related programs. National disability statistics have been collected since the mid 1990s by the NCHS. The ICF, approved by WHO in 2001, highlights a continuum of function  These developments occurred during a period when social movements of persons with disabilities grew and evolved along three vectors, namely,  recognition of the role of environment in the genesis of disability;  acknowledgment of the legitimacy of differences in manners of functioning; and, independent living of  and concerted political action by people with disabilities.

          It is in this context that the forerunner of the Disability Section of APHA was organized in 1988 as ‘’Caucus on Disablement’’, a title that had a specific significance:

As a caucus, members only had to pay the $10 membership fee, rather than the expensive APHA membership, and there was little financial barrier to participation by the general population of people with disabilities. Disablement meant that there was an emphasis on how people with impairments are made disabled by social factors. The change to a ‘’Special Programmatic Interest Group on disability’’ or Disability SPIG (aka Disability Forum) as a  step toward becoming a section led to the loss of many  non-professional people with disabilities, since the SPIG members have to pay for the much more expensive APHA membership. The term disability was more neutral than disablement.

          Soon after the SPIG was organized, a great (and successful) effort was initiated to develop a strong program of chiefly research papers and posters at the APHAS annual meeting. That program quickly became a major outlet for USA research on disability. Although the sessions have diverse themes,  emphasis up to the present have been  on  disability statistics and classification, environmental factors, and. health maintenance, needs and services  of persons with disabilities, as well as sessions devoted to specific impairments. However, it was not the only orientation that the SPIG could have taken. For instance, it might have emphasized disability health policy research , for instance on ADA’s Titles II and III, state policies and court actions, and national health care reform from the perspective of disability. There were papers or even sessions on such topics, however the Disability SPIG did not develop a major thrust in that direction.

          What the public health community can do for the disability community is to address these barriers and needs. In the context of APHA (and also of state public health societies), the disability section might make a contribution by getting much more involved in policy development that it has been in the past. This should not be limited only to national health insurance reform, although that is an important part of it.  With regard to national health reform, clearly, people with impairments should not have to be excluded from programs or  pay more for premiums than the rest of the population.  But more needs to be done. Reimbursements of providers should be adjusted to the supplementary time and effort required for people with certain impairments. For instance dental care may take much more time than usual for a person with abnormal movements or with intellectual deficiency. If such adjustment is not done, quality of care suffers. Assignment of  funds in a national health program should not short change chronic care services in institutions, ambulatory settings, or home care. There is an opportunity to significantly increase the volume and the quality of rehabilitation services. Some neglected areas such a post-acute rehabilitation should be given special attention. These are only a few examples of the needs for involvement of people with disabilities in national health care reform. When the health reform bills come through, they should be looked at in their entirety to monitor them for their suitability for people with disabilities. The Disability Section should take the lead for this endeavor with the respective organs of APHA.

          In other policy areas,  public health authorities must increase their implementation of the Olmstead decision. Better statistics of work and housing for persons with disabilities should be worked out between the Departments of HHS and the Departments of Labor and HUD, respectively. Medical, public health, and other professional education  should be thoroughly examined to introduce material in the curriculum that prepares the students for working with all people with disabilities. The disability section may select some such areas to work on, bring them to the attention of other sections in APHA and exert pressure on APHA to actively support the needed policy changes. This cannot be effective at the level of resolutions alone; it must require some preliminary team work with other sections to develop enough punch.

          However, the disability movement (and in its APHA context, the disability section) should not miss another opportunity. People with disabilities have acquired experience and knowledge that can be translated to public health with benefits for the latter community.

          The first such area comes out of their experience in disability politics. The disability community has had an active experience since the 1980s in rejecting a medical approach to its problems and, instead, declaring that these problems are political in nature. It is time for the public health community to take the same attitude. Further, in taking political action, people with different levels of severity or types of impairments have been able to act together in pressing for policies that would be effective for all.  This example should not be lost to public health in its quest for health insurance. The public health community needs to unite people with different health needs and interests – workers with expensive health insurance, workers with cheap health insurance, uninsured people; infants/youth and elderly/retired persons – into a common political action that satisfies all. At the level of APHA, the disability section may bring up these points with other sections of APHA, particularly the public health education section, one of the largest in APHA. It may take some time efforts to translate this experience in disability policy to an experience in health policy to members of the public health education section, but if that effort is successful, these members may include this lesson in their grassroots messages to help in developing a united political movement for significant health care reform.

          The second area is socio-economic (class) disparities. The disability community is aware not only of the great socio-economic gradient across the disabled population, but also of the complexity of factors that are associated with that gradient. For instance, the ADA has not been particularly successful in increasing the number of disabled people that have work. This is because discrimination is only one barrier to work. A questionnaire study by the Urban Institute showed that the order in which persons with disabilities listed their barriers to work was: 1) social isolation that made it difficult to know about work opportunities;  2) familial responsibilities (e.g. care of infants); 3) lack of means of transportation; 4) lack of education and training for jobs; 5) fear of losing entitlements such as SSI and Medicaid; and  6) job discrimination. Clearly, attempts to decrease socio-economic disparities in health or health care must deal with much more than the financial barriers, important as those are. Social isolation, family responsibilities, transportation, education and training, and social and physical environmental changes would have to be addressed, besides financial incentives. This would require a concerted effort in several societal sectors, that would in turn require cooperative work first, of several sections of APHA (e.g. disability, maternal and child care,  environment, education, social work, etc) and eventually cooperative work of APHA with other organizations along the same lines.

          A third area is the person-environment relationship. Following a conceptual revolution on the role of the environment by English disabled persons in the 1960s and 1970s, the idea that environment determines disability gradually took hold in the population of persons n situations if disability. It was clearly formulated in the framework for the relation of the person-environment interaction to the life habits of disabled persons developed in the mid-1980s by Fougeyrollas and his colleagues. In the mid-1990s a seminal report by Fougeyrollas and Whiteneck put the environment squarely on the agenda of the groups that were revising the ICIDH and by 2001, the environment had become one of the three components of the ICF when WHO approved it that year. Disability researchers have devoted a considerable amount of time and effort in the clarification of the environmental codes of ICF and in the analysis of the person-environment relationship. That dual experience, on the role of the environment and on the person-environment relationship should be translated to other APHA sections and through them to other health sectors of the US, so that its significance for health and health care is better understood. This is an area in which disability researchers are at least ten years ahead of health services researchers.

          A fourth area  is the dynamic concept of health that is akin to the dynamic concept of disability. The dynamic concept of disability is now well accepted.  People may have disability in one environment and no disability for the same function in a different environment. Conversely, people may have disability for a given function in one environment and no disability for another function in the same environment. These distinctions are conveyed by the spelling ‘’disAbility’’. Further, the extent and nature of disability is very flexible, as conveyed by the term modulation of disability. The same may be said of health. People can be healthy when tested in a given environment and not when tested in a different environment. They can be healthy according to some parameters and not according to others. The state of health is constantly modulated in most chronic conditions. The experience of people in situations of disability with these distinctions should be conveyed to people in situations of ill-health and to their providers and care givers. At the level of the APHA, members of the disability section might want to discuss this with members of the epidemiology, occupational health, environment, gerontology, and medical care section.

          Finally a fifth area relates to the concept of normal. DePoy and Gilson have pointed to the tyranny exerted by the Gaussian curve on people with disabilities and the need to ‘’flatten that curve’’. The Gaussian curve has two detrimental effects: 1) it disregard differences; 2) it is often applied to one variable only, but its implications are carried to the entire person. The concept of normal is central to modern medicine and public health. In medicine, it serves important diagnostic and prognostic functions. For instance a marked deviation from average blood pressure like  240/100 carries significant risks that must be addressed by bringing it closer to the average. However, an excessive focus on deviation from the average for one biomedical factor may be problematic in several ways particularly with  borderline or low deviations  It tends to increase medical care and its deleterious side effects. The current concern about the role  of PSA in the management of prostate conditions is a case in point.  It may disregard population differences that affect the interpretation of deviation from normal. For instance stroke is associated with high blood pressure in the US, and populations of US individuals have higher blood pressure than populations of Japanese individuals, but there is a high proportion of strokes among Japanese. It tends to focus on certain items where a large number of individuals have high deviation, rather than on the total health and disease status of the individual or the population.  Medical and public health practitioners have developed ways to manage such concerns in their work. However the Gaussian distribution may have problematic effects in health related industries. Pharmaceutical companies may take advantage of small deviations to push their products. Similarly, health insurance companies may take advantage of deviations from normal to raise their premiums or disqualify applicants. Health providers may take advantage of deviations to increase number of visits. Surgeons may provide cosmetic surgery to patients who wish to be closer to the average in appearance. The disability community and the public health communities may work together, within APHA and in other settings, attempt to offset the use of the Gauss curve for material aims.

          Materialistic factors have a strong impact on many of the issues discussed in this paper. In the development of the disability section, the high cost of membership has prevented the participation of disabled persons who are not public health professionals; and the cost of attending the APHA meeting has selected those researchers who have grants that cover their expenses and therefore the type of papers presented at the meeting.

 

On the broader societal level, some features that are detrimental to health or disability, such as excessive reliance on Gaussian distribution, neglect of the dynamic nature of disease, neglect of the role of the environment, inequality in health care, and medicalization of health and disability, are supported or even augmented by pharmaceutical companies, health insurance companies or health provide organizations that use them to increase their profits. APHA participants cannot deny the importance of these materialistic pressures that have an impact on them, but they may still have personal resources of opportunities and character to find the time to a) analyze and expose them and b) help to construct policies to offset them. This is particularly important in this time of excessive materialistic enterprises. So far we have had the internet bubble, the housing bubble, along with excessive growth of banks and of speculation. There may well be health insurance bubbles, and excessive growth of HMOs and pharmaceutical industries in the future that are determined by some of the items discussed in this paper and by how the disability and public health communities take preventive political economic action together.