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ATBCB Testimony
Monday, March 13, 2000
Washington D.C.

"Invisible" Disabilities

National Coalition for the Chemically Injured
2400 Virginia Avenue NW, Suite C501
Washington, DC 20037
Phone (703) 533-7864

Architectural and Transportation Barriers Compliance Board (Access Board Hearing)

Distinguished members of the Access Board and distinguished guests, thank you for this opportunity to address you.

My name is Stan Scarano, I am co-president of the National Coalition for the Chemically Injured. (see Background page --

I am here today to speak on behalf of the "invisible" disabilities: multiple chemical sensitivity (MCS), chronic fatigue, fibromyalgia, Gulf War Illness, Agent Orange and numerous other disabilities that are exacerbated by exposure to toxic chemicals.

We are asking your help to provide the MCS and its brother and sister communities access to public buildings, schools, office buildings, and public transportation, e.g. airplanes, rail systems, and bus systems. We believe the key to access to these facilities is "Air Quality."

We believe that topics like "air quality" and in particular "indoor air quality" fall within the jurisdiction of Architectural and Transportation Barriers Compliance Board. Ventilation systems are vital architectural components of buildings and transportation systems. It is obvious that if toxic chemical concentrations /volatile organic compounds (VOCs) reach dangerous levels that the ventilation system is not functioning properly or does not have enough capacity.

Neurotoxic substances are a major threat to the MCS community. As the Office of Technology Assessment (OTA) states:

    "Neurotoxic substances, those chemicals which adversely affect the nervous system, are present in a wide variety of substances to which Americans are exposed at home and in the workplace. The National Institute for Occupational Safety and Health (NIOSH) has reported that millions of US workers are regularly exposed to neurotoxic substances and has identified neurotoxic disorders as one of the Nation's 10 leading causes of work-related disease and injury. In the Environmental Protection Agency's (EPA) 1989 Toxic Release Inventory, a listing of the most prevalent pollutants released by industry into the environment, 17 of the top 25 substances listed have neurotoxic potential (see figure 1). In addition, a large percentage of the 600 active pesticide ingredients registered with EPA are neurotoxic to varying degrees. The extent of the health risk posed by neurotoxic substances, however, has been underestimated in the public consciousness as well as in current regulatory and research frameworks.

    "Symptoms of damage to the nervous system range from impaired movement, anxiety, and confusion to memory loss, convulsions, and death. Effects may be evident immediately, or may not surface for months or years. Classes of potentially neurotoxic substances include industrial chemicals, foods, food additives, cosmetic ingredients, abused drugs, therapeutic drugs, and naturally occurring substances such as lead and mercury. The adverse effects on health depend heavily on the toxicity of the substance and the degree to which individuals are exposed. Indeed, many substances that have neurotoxic potential appear to be harmless at low doses.

    "Certain groups of individuals, including those with developing and declining nervous systems, such as fetuses, children, and the elderly, are more susceptible to the effects of neurotoxic substances than other groups."
    (source: Neurotoxicity: Identifying and Controlling Poisons of the Nervous System, OTA Report Brief, April 1990.)

That was 10 years ago. Why hasn't something been done?

The following is EPA's list of the major causes of Sick Building Syndrome:

    Inadequate ventilation: In the early and mid 1900's , building ventilation standards called for approximately 15 cubic feet per minute (CFM) of outside air for each building occupant, primarily to dilute and remove body odors. As a result of the 1973 oil embargo, however, national energy conservation measures called for a reduction in the amount of outdoor air provided for ventilation to 5 cfm per occupant. ...

    Chemical contaminants from indoor sources: Most indoor air pollution comes from sources inside the building. For example, adhesives, carpeting, upholstery, manufactured wood products, copy machines, pesticides, and cleaning agents may emit volatile organic compounds (VOCs), including formaldehyde. ...

    Chemical contaminants from outdoor sources: The outdoor air that enters a building can be a source of indoor air pollution. For example, pollutants from motor vehicle exhausts; plumbing vents, and building exhausts (e.g., bathrooms and kitchens can enter the building through poorly located air intake vents, windows, and other openings. In addition, combustion products can enter a building from a nearby garage.

    Biological contaminants: bacteria, molds, pollen and viruses are types of biological contaminants. These contaminants may breed in stagnant water that has accumulated in ducts, humidifiers and drain pans, or where water has collected on ceiling tiles, carpeting, or insulation. ...

    (source: Sick Building Syndrome (SBS), Indoor Air Facts No. 4 (revised), EPA Office of Air and Radiation, April 1991.)

We, the MCS community are the legacy, if not the children of a SILENT SPRING. The chemical injury/multiple chemical sensitivity (MCS) community is the direct result of increased usage of pesticides and other toxic chemicals in the environment. Just as Rachel Carson portrayed in her seminal work on the environment, many in my community have been silenced by their chemical exposures. However, many more have been silenced by the effectiveness of the chemical industry in discrediting our claims through lobbying the Congress, poor science in their studies, crippling us through the court systems, and driving us into poverty by denying us workmen's compensation and social security disability benefits.

The MCS community is up against the most influential and powerful segment of our society: the corporation, and in particualr, the Chemical Industry. How powerful are Corporations?

When the President of the United States was alleged to have lied under oath to the Congress -- concerning a personal indiscretion -- the Congress spent several years and over 40 million dollars to impeach him.

When tobacco industry executives lied to Congress about their knowledge of the health effects of tobacco, which killed hundreds of thousands of Americans, the Congress did nothing!

Remember, the MCS community is different from ever other disability that comes before you: Our disability is preventable.

Anything and everything you do to help the MCS community (by removing toxic chemicals from the environment) has a direct benefit to every living person and thing on this planet.

For additional information concerning MCS and the issues that surround it, please visit our website:

Stan Scarano, Co-president, NCCI

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The Environmental Health Network (EHN) [of California] is a 501 (c) (3) non profit agency and offers support and information for the chemically injured. HomePage is