Of Guatemala, Willowbrook and a Small School in Canton, MA
By Mike Reynolds
for Ability Maine

In early October of last year, the US Government officially apologized
for a series of medical experiments conducted by John Cutler from
1946-1948. Funded by the United States National Institutes of Health,
the US Public Health Service, Pan American Sanitary Bureau and several
Guatemalan government agencies conducted experiments on nearly 700
citizens of Guatemala who were deliberately infected with syphilis.
These citizen subjects of the experiments were commercial street
walkers, prisoners, and residents of a mental health hospital.  Some
were then treated with penicillin to test the effectiveness of the
antibiotics against sexually transmitted diseases. Over the course of
the study, 71 people died, including one who developed status
epilepticus during penicillin therapy.  This work was brought to light
by Susan Reverby, a medical historian at Wellesley College, during her
work in the archives of the University of Pittsburgh where she was
conducting research for her book Examining Tuskeegee. Unlike the
Tuskegee experiments, which were widely known to professional circles,
the Guatemalan experiments were not ever published in professional
journals or any other forum. Ironically, it was in 1947, just this
period of the Tuskegee and Guatemalan experiments, that the Nuremberg
Code was being discussed and written. The Nuremberg Code is a set of
ten principles that, while not laws, are written into US Federal
regulations and form a basis for the conduct of ethical medical
research internationally.

It seems evident that people with disabilities were used for unethical
experimentation in history, far more than their percentage of the
population. These experiments went on for decades, not merely weeks or
months, but decades! It completely boggles the mind that people would
devalue the lives of people with disabilities so completely.  We are
reminded of other unethical experimentation on vulnerable people,
including the injection of live cancer cells into patients at the
Jewish Chronic Disease Hospital, healthy children intentionally
inoculated with Hepatitis C at Willowbrook, the lack of treatment of
Tuskeegee African American sharecroppers who had syphilis even after
penicillin was determined to be an effective treatment for the
disease, and the radiation studies involving the “Boys Club” at the
institution at Fernald School during which oatmeal was radiated and
men with intellectual disabilities observed for effects.

Given our historical knowledge and contemporary emphasis on ethical
research, why is a school in Massachusetts being singled out by the
United Nations and condemned by the body for violating the rights of
the students living there? The school, which uses aversive shock as a
tool, started in 1971 to “to apply, in a comprehensive and
thoroughgoing manner, the then-newly emerging science and technologies
of behavioral psychology to the education and treatment of severe
behavior disorders” (from the school's website). While the school
appears to follow all local state and federal laws, the school has a
problematic history of student deaths, and the Justice Department is
currently investigating allegations of possible wrongdoing and
violation of students’ rights.

Unlike Tuskeegee, the media – including Oprah, CNN, 48 Hours, The New
York Times, Nightline, and Mother Jones -- have all covered the issues
that the school raises in terms of serious concern for the students
enrolled there.  After a student left the school and discussed his
time there, he died a premature death due to his disability, the senior administrator of the Massachusetts school used the student's death as an example of “the fatal
experiment of positive only supports,” and on the website blames the
standards of community support, and inclusion for the death.  The
senior administrator fails to see that J.V. (initials of student)
could have anything to contribute to society.

The assumption could not be further from the truth.  For the Senior
Administrator, who has an economic interest, along the lines of
$200,000 per student, all he sees is money not in his pocket. But
really what kind of  contribution can a severely disabled student who
was once shocked several thousand times in a 24 hour period make?

The answer, surprisingly is a huge one. I was one of those folks who
saw J. V. speak in Boston, an event that was mentioned in the New York Times
series.  I remember the authors of my grad course text book were
sitting in the same room, along with most of the faculty and well,
significant leaders in the disability movement sat mesmerized
listening to J.V. I distinctly remember wishing at the time that I
would be able to fill the room with that  level of awesome folks if I
ever spoke at a national conference.  J. V. was an articulate voice
for the dozens of students still receiving shocks on a daily basis.
Maybe that's why there was such a need to discredit J. V.

For more Information click here for the first article about JV in the New York Times. For editorial reasons the writer declined to mention the school's name in this story.