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December/6/98:
NATIONAL ENVIRONMENTAL JUSTICE ADVISORY COUNCIL MEETING
Baton Rouge, Louisiana
December 7, 1998 - December 10, 1998
(Written Statement to be Read into the Public Record)
November 20, 1998
MULTIPLE CHEMICAL SENSITIVITY = AN ENVIRONMENTAL INJUSTICE
It is imperative that NEJAC expand the scope of its mandate to ensure
that the US EPA is cognizant of all the divergent viewpoints on
issues related to environmental justice, by including an unbiased,
comprehensive, and ongoing assessment of the plight of patients
diagnosed with Multiple Chemical Sensitivities (MCS). As I have
studied this beleaguered, impoverished community for some 15 years,
it is clear that they have been subjected to a chronic pattern of
deficiency and neglect by the government, by the national media and
by mainstream medicine. The validation and accommodation of the
unique needs of this sizable and continually expanding subset of the
population, is pivotal to establishing a sound national environmental
policy. Even just a superficial review of the challenges faced by
indigent, indigenous peoples and those of the MCS community, will
quickly reveal a myriad of heretofore overlooked similarities. They
are members of the same maligned and impugned brotherhood.
In 1939, Sir Winston Churchill described Russia as “A riddle wrapped
in a mystery inside an enigma.” He could well have been describing
MCS. This syndrome, manifested in a perplexing constellation of
symptoms, in any one or in any combination of organ systems of the
body, may well signal the emergence of a new medical paradigm for
disease; one that has the potential to clarify many chronic and
costly illnesses.
Some parallels between the environmental injustices faced by MCS
patients and other disadvantaged peoples include:
ˇ These victims have been and continue to be environmentally and
chemically assaulted and injured by unchecked pollution and
contamination. The chemistry of their bodies has been altered. (US
EPA adipose studies have found at least 140 foreign chemicals in
human body tissue samples.)
ˇ These victims, members of demographically divergent groups, have
become environmental refugees. These dispossessed and disenfranchised
individuals live a life in exile; sometimes homeless, sometimes
nomadic.
ˇ These victims have tortured lives, the logical consequence of the
failure of government to properly regulate chemicals. They are the
result of a government that condones a type of “guinea pig status”
for the seemingly powerless portions of the population.
ˇ These victims have been subjected to bias and discrimination in an
attempt to discredit , minimize, and trivialize their complaints.
ˇ These victims must regularly confront bureaucratic apathy,
wholesale dismissiveness, collective indifference and the
professional incompetence of the nation’s policymakers.
ˇ These victims have been treated to widespread governmental and
scientific inertia.
ˇ These victims have been the target of governmental whitewashes and
deliberate smokescreens as seen in such places as Times Beach,
Missouri; Love Canal, New York; Jacksonville, Arkansas; Columbia,
Mississippi; Texarkana, Texas; St. Gabriel and Convent, Louisiana.
ˇ These victims have been the subject of sloppy and deceptive
“studies” that use blunt tools incapable of measuring evidence and
accurately drawing correlations.
ˇ These victims have been inadequately served by health assessments
that are “incomplete and of questionable value,” of “poor or uneven
quality,” “seriously deficient,” and “inconclusive by design.”
(US
GAO 1991; NAS 1991)
ˇ These victims have watched in dismay as departments of public
health have become departments of unfounded public reassurance.
ˇ These victims are mislabeled as malingerers, chemophobics, and
hypochondriacs. They are told that their ailments are a volitional
disability or the result of mass hysteria. They are treated with
contempt, scorn, cynicism and openly demeaned and ostracized.
ˇ These victims have been subjected to threats, bullying and
harassment by state and federal governments and by industry.
ˇ These victims share a sense of alienation, isolation and
frustration because of the lack of a positive response by their
government and by the medical profession.
ˇ These victims have been denied disability benefits to which they
are legally entitled.
ˇ These victims have to deal with a sense of abandonment, devastating
economic losses, homelessness and the severe stress of protracted
litigation.
ˇ These victims have been forced to live in “a world which is just
not quite fatal,” as described by ecologist Paul Shepard in Silent
Spring by Rachel Carson.
ˇ These victims, due to chemical barriers, have been denied access to
safe housing, employment, health care, education, houses of worship,
recreation and public facilities.
It is critical that NEJAC initiate and support objective research by
scientists, not funded by industry, to protect these environmental
victims; and begin immediately to place primary emphasis on a
precautionary approach to environmental health. We need a national
shift toward pollution prevention. As a nation, we must put an end
to environmental health illiteracy and toxic ignorance. 78% of the
chemicals in highest-volume commercial use have not had even
“minimal” toxicity testing, according to a report by the
Environmental Defense Fund (1997). Medical doctors have not been
adequately trained to understand or seriously investigate conditions
related to environmental injury. According to the Institute of
Medicine, the vast majority of medical students receive less than 4
hours of training in occupational and environmental medicine or
toxicology and nutrition. These glaring flaws must be corrected.
It is time for us to prioritize helping people first and collecting
data second. Our current system operates backwards! It was modeled
to fit the agenda of industry. The ploy is to put enough hurdles of
proof in front of sick communities and sick people, so that they will
be unable to fight back. But fight back we are!! Environmentalists
from around the world are in awe of the legal and moral victory
recently won by the courageous people in the exposed community of
Convent, Louisiana. They stopped the poison-for-profit plans of the
state government of Louisiana. They halted construction of the
Shintech PVC Complex, a $700 million polyvinyl chloride plastics
plant in St. James Parish, which had been ranked the most toxic
county in America for almost a decade. It is important to note that
in so doing, they incurred the visible and audible wrath of our
embarrassingly unevolved Governor Mike Foster, clearly a man more
devoted to big business than to the health of his constituents. He
had the audacity to call the residents of St. James Parish, “bullies,
” for fighting to protect the already compromised health of their
community and for advocating for their own rights. The actions of
the Governor and the State of Louisiana clearly demonstrate the need
for strong federal policies to protect environmental victims, just as
President Clinton’s 1994 executive order on environmental justice
promised to do.
Our traditional image of the face of the environmental justice victim
must be broadened. It must not only describe Native Americans, Latino
people, African Americans or other racial minorities that have
suffered unimaginable environmental inequities. It must also embrace
all Americans who have endured Toxicant Induced Loss of Tolerance
(TILT - a term coined by Nicholas Ashford, Ph.D. and Claudia Miller,
M.D.).These victims belong to a new community without borders or
boundaries... a community characterized by .Multiple Chemical
Sensitivity.
Albert Schweitzer said, “Man can hardly even recognize the devils of
his own creations.” NEJAC must correct this deficiency and respond
in a unified way with fervor, diligence and speed, to any and all
allegations that MCS does not exist; and to any and all efforts on
the part of industry’s cigarette scientists to ask more time and
wiggle room. I implore you to recognize that environmental injury is
an out-of-control roller coaster that must be derailed. And I urge
you to appreciate that a civilization built upon the traumatization
of its people and of the Earth is bound to self-destruct. Stop the
poisoning and let the healing begin.
I respectfully request that this written statement be read into the
public record.
Irene Wilkenfeld
(published with permission)
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