https://cpb-us-e1.wpmucdn.com/blogs.uoregon.edu/dist/d/16656/files/2018/11/Bronston-Shape-of-a-Marathon-1jh
William Bronston, “The Shape of a
Marathon,” 1979, Carton 11, Folder 18, William Bronston Papers, [BANC MSS
2002/227 c]. Courtesy of The Bancroft Library, University of California,
Berkeley.
William Bronston was a physician and
activist whose career reflected the rise of disability rights consciousness in
the 1960s and 1970s, especially as it applied to children and adults with
developmental disabilities. Bronston worked for several years at Willowbrook
State School in Staten Island, New York, a massive residential institution that
housed thousands of developmentally disabled children. In 1972, parents filed a
class action lawsuit against the state because of the school’s deplorable
conditions, which included overcrowding and physical abuse. Willowbrook became
a national rallying cry for deinstitutionalization and a symbol of all that was
wrong with segregated institutions. An agreement was reached in 1975 to move
Willowbrook children into community placements but the school wasn’t finally
shuttered until 1987.
Born and educated in Los Angeles,
Bronston returned to California in 1975. He first served as Medical Director of
the State Department of Developmental Services and later as Medical Director in
the State Department of Rehabilitation. This excerpt illustrates how
significant normalization was for
professionals like Bronston. He described it as the state’s official philosophy
when it came to shaping the lives of developmentally disabled children in the
1970s and beyond.
Normalization
There officially exists in
California a philosophy of services that is based deeply in values. It submits
that in order to grow, each person deserves:
- love, honor and freedom from stigma throughout life
- celebration of being special
- a life-sharing family, home and nurturing support
- a community of concern and friendship
- economic security, health and the full benefit of modern technology with a varied continuum of services
- freedom from the threat of injury due to pollution of food, air, water, and the earth on which we dwell
- the opportunity to grow, learn, choose, work, rest, play, be nourished, to experience well-being
- solitude when needed
- comfort and beauty in which to discover him/herself
- the power to improve his/her environment
- justice
- the dignity of risk, joy and growth of spirit
- a valid social future.
Such philosophy sums up many of the
deepest held beliefs about quality of life. These beliefs are at the root of
our current and emerging civil rights and human services laws and standards.
How any of us, as human beings, are
perceived decides how we are treated in society…. Normalization in theory and
operation offers a standard of minimum acceptability on which human services
must be conceived, planned, provided, and judged.
Normalization advocates the use of means
which are culturally normative in order to offer a person life conditions at
least as good as those of the average citizen and, as much as possible, to
enhance and support personal behaviors, appearance, experience, status, and
reputation to the greatest degree possible….
Normalization insists upon
accentuating the positive and eliminating the negative by doing everything
possible to integrate people who have special needs into everyday lives so that
they may enjoy all we value for ourselves.
Normalization dictates use of the
least restrictive or drastic means to help people grow and change to avoid stifling
personal liberty….
How do we assure not only that we do
no harm, but that we uplift the persons we serve in the eyes of their fellow
citizens?….
The idea [of normalization], like a
dandelion seed carried on the wind, spread to consumers, planners, teachers,
service providers, advocates and researchers alike. If we do our job well, we
may at least derive the following service benefits or actions:
- Institution placements prevented
- Persons returned from institutions
- Emotional breakdowns prevented
- Family breakup averted
- Loneliness dispelled
- Health preserved or restored
- Services or social participation enhanced
- Proper treatment provided
- Persons habilitated
- Dollars saved
- Personnel needs reduced
- Justice rendered or preserved.
We are still in the first mile, a
mere decade, into a marathon that will stretch on and on towards the excellence
of attainment and fulfillment….
It is meant to be a small commitment
to common humanity and respect for every human being.
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