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.