After the polio
epidemics in the
United States ended, the
March of Dimes had changed its mission from polio to
birth defects; most of the special
rehabilitation hospitals and clinics devoted to polio survivors were closing; clinical specialists in polio were scattering. Polio survivors (substantially more in 1960 than the
CDC-estimated one million in the US who were still alive in 1995) were often isolated from the support needed to cope with maturing and aging with a significant physical disability. PHI at first devoted itself to making sure
polio survivors could stay in touch with each other as needed, and with clinicians who had special expertise with
polio. These efforts evolved into a variety of publications aimed at providing authoritative information on health issues for polio survivors, and on mainstream opportunities for them – as well as for other people with significant physical
disabilities – in education, employment, family life, travel, and leisure activities. The organization’s magazine (until 1985),
The Rehabilitation Gazette, had those matters as its dominant themes. By the late 1960s and early 1970s, PHI was also at the forefront of what has come to be called the
independent living movement (or as Gini Laurie preferred to call it, the interdependent living movement) and was also involved in advocacy for the US
1973 Rehabilitation Act.
Accessibility (of public places, education, governmental institutions, and of transportation and accommodations) was a major theme, as was the development of an effective system of
home health care and personal attendants to ensure that people with serious physical disabilities would be able to live in the community of adults rather than as perpetual dependents within families or institutions. Toward the end of the 1970s, PHI began to receive an increasing number of reports from polio survivors of new symptoms – a constellation of
fatigue, decreased
endurance, increased muscle weakness and
pain – that sounded like a repeat of some of the early symptoms of poliomyelitis, or perhaps an accelerated aging process. In concert with clinicians, researchers, and polio survivors, PHI began to publish material on these “late effects of poliomyelitis,”. And in 1981 PHI convened the first of its international post-polio conferences to address this issue. There have now been nine international PHI conferences on
post-polio syndrome and other topics having to do with living and aging with polio. These “St. Louis conferences” as they are often called in polio circles, are not always held in St. Louis. The first in the series was held in
Chicago, and the tenth was held in
Warm Springs, Georgia, in 2009. During the 1980s, as
support groups for polio survivors began to form throughout the US and elsewhere, PHI offered help to such groups in various ways – especially through its conferences and publications (including directories of support groups and health care professionals), but also through arranging speakers, assisting with local or regional conferences, and sponsoring workshops. PHI is not itself a support group, but rather remains a network in support of such groups, and in support of individual polio survivors, clinicians, and researchers. Until 1984, though always incorporated as a
nonprofit organization, PHI had operated entirely with a large network of volunteers, organized and led by Gini Laurie. Financial support came from donors and subscribers to the
Rehabilitation Gazette. But after the 1983 St. Louis conference, it was evident that a more formal organizational structure was required. Judith Raymond was hired as executive director in 1984, and took over PHI’s day-to-day operations as well as editorial work on its publications and organizational work on its conferences. She was succeeded in 1987 by Joan L. Headley, who served as executive director for 30 years, retiring in 2017. She was succeeded by Brian M. Tiburzi on September 1, 2017. ==Notes==