MCS and its Consequences

review by Katherine Duff

, by Alison Johnson

Cumberland Press, Box 213, Brunswick, ME 04011; www.alisonjohnsonmcs.com, Softcover; 2008; $ 15; 304 pp.

For many years, Alison Johnson has been writing books and producing videos to educate others about multiple chemical sensitivity (MCS). She has informed her viewers and readers about the impact that this devastating condition has on the lives of those affected. Her latest book, Amputated Lives: Coping with Chemical Sensitivity is certainly her boldest effort to date, for in it she is recording the willful disregard for the health of others that is swelling the ranks of those developing MCS, while its existence continues to be denied.

The denial of MCS magnifies the toll, which Johnson describes in this book. Our mainstream medical community and businesses have been assertive in defining people with MCS as being mentally ill or opportunists seeking attention or financial gain. This has stopped efforts to prevent this condition and assured disbelief from the very people whom one would turn to when confronted with a serious illness – doctors, family, friends, and insurance companies that can deny access to appropriate care. Requests for accommodation by the person with MCS, then, are perceived as unnecessary manipulation. It is not uncommon for those requests to be met with hostility from family and coworkers, some going so far as to contaminate the person’s environment with perfumes and other chemicals for the fun of it. The search for a safe environment can become nearly impossible.

In Part I, Johnson examines five environmental events that have left people with chemical sensitivity. She begins with what must be the most ironic incident of all: the 1987 remodel of the Washington, DC, headquarters of the Environmental Protection Agency (EPA). Employees inside the building started to become ill after the installation of new carpets. As a few hundred workers became ill, EPA management expressed concern but in fact did little to remedy the air- quality problems or help the workers. It took the workers’ union to figure out the many air- quality problems in the building that were causing illness.

In what would become a template for future environmental health disasters, the problem of sick workers was managed to minimize liability concerns over health issues. First, the occupational medicine physician who worked with the EPA’s health unit reported his findings that confirmed illness in the workers consistent with “tight building syndrome.” He was immediately terminated. Employees seeking their records for visits to the EPA health unit found that they were missing. When tests confirmed the presence of toxic chemicals in the air and especially neurotoxic chemicals in the carpet, management refused to compensate the sick workers or to take any action to protect the public from such exposures. The fact that many of those workers developed chemical sensitivity was denied by management.

Johnson examines the response to other environmental disasters, including the Exxon Valdez cleanup, the 1991 Gulf War, the World Trade Center disaster, and the aftermath of Hurricane Katrina. Often, during these events, public health officials declared air quality safe when it was not. After the September 11 attacks, workers and residents received poor guidance for protecting themselves during salvage operations, cleanup, and returning to work in the area. Some residents were even offered incentives for moving back into the area when it was still contaminated. After Katrina, volunteers and residents were not told of the toxins from the flooded oil and pesticide plants saturating the homes and ground , nor were they taught precautionary measures against exposure to the mold. After the Exxon Valdez, it was learned that warning labels had been removed from some of the cleaning chemicals used by the workers. These events left scores of chemically injured people, many of whom developed MCS.

What developing MCS means is spelled out in Part II of this book. Johnson gives us 28 biographies that perfectly illustrate the title , Amputated Lives. These are the stories of once- healthy people who may differ in background and occupation but go through similar experiences of health problems. They are confronted with the challenges of finding less- toxic housing, managing their lives without jobs, and coping with the disbelief of the medical community and other institutions.

For those seeking to educate others and for doctors willing to open their eyes to the truth, Johnson provides a 12-page bibliography of studies on MCS that have appeared in peer-reviewed journals. In the meantime, Johnson’s books and videos will continue to serve as documentation of willful denial of MCS and its consequences that are mounting up to be a monumental disgrace for professionals who place liability concerns over the lives of their fellow citizens.

Pearl: “All my books and documentaries have had a central goal in mind – to convince readers and viewers that chemical sensitivity is real and is devastating far too many lives.”