THE SCIENCE OF STORYTELLING
By Marleen M. Quint
Women’s Health and Environmental Advocate
As a kid in the 60’s, I remember a slogan from DuPont: "Better things, for better living, through chemistry." the time it invoked confidence and hope for the future. Now, it just gives many of us the creeps. Have you noticed that science keeps generating more and more technology for the benefit of mankind yet the public is experiencing less and less of its benefits? Too often research money comes from wealthy corporations or government agencies with very specific agendas that usually conflict with public health and safety. Research results are often marginal at best or junk science at its worst. The resulting flawed or incomplete research is presented to policymakers who then say, "See, there’s no concrete proof that small doses of highly poisonous chemicals individually or collectively will eventually kill you, therefore, there’s no reason to keep these chemicals from being systematically pumped into your land, air and water. That‘s the price you pay for progress." Public health officials then blame us for our own diseases by telling us we’ve been making poor life style choices.
This cycle of inconclusive science translated into ineffective policymaking has been an accepted process in this country for generations. It has always given government and industry a license to compromise the public’s well-being. The result in the 21st century is an environment that has become so toxic you can’t buy a can of brand-named tuna without the guarantee of ingesting dangerous levels of mercury, or buy a new shower curtain without knowing that the vinyl chloride you’re breathing in is highly carcinogenic, or walk outside your house without the fear of inhaling a number of toxic air particulates. The time is long overdue to change the approach of environmental research and policymaking.
Rediscovering Common Sense
Grassroots health and environmental activists have finally been tentatively invited to join scientists and policymakers in the health research process. One of the ideas activists have brought to the table is a more common sense approach to environmental policy called the "precautionary principle." This principle simply states that any activity that threatens human health and the environment should be prevented through precautionary measures even if that threat is not fully proven through scientific research. The principle shifts the burden of proof to those creating the risks. It also demands alternatives to polluting activities and requires public participation in changing health policies.
Although the precautionary principle originated in the research arena, it has yet to be widely applied to the research process. Advocates have been communicating what research they want done but have not clearly examined how to best conduct such research because it falls into the domain of science. Scientists, on the other hand, continue to conduct research according to academic, government and corporate interests (and not necessarily in that order) because research protocols haven’t changed much in several decades. In either case, direct public input is minimal or nonexistent. The average Joe pays the price for profit and special interest yet is seldom told the truth about the price he’s paying and rarely has a real voice in the process.
Helping Science Tell Our Story
I looked-up the word science and found its original meaning to be, the "state or fact of knowing." The second definition is, "systematized knowledge derived from observation, study and experimentation carried on in order to determine the nature or principles of what is being studied." These definitions confirmed my belief that the seeking of scientific knowledge does not have to be confined only to scientists and that today’s scientific studies are often confined to an unnecessarily narrow range of knowledge.
There are many communities in the United States that represent geographic pockets of disease clusters. Scientific study has been generated in many of these disease clusters with little conclusive results and often little policy change for the benefit of community members. Too often lawsuits are the only means of policy change and restitution. Many consider that too little, too late. You can’t undo the pain or bring back the dead. It would have been so much cheaper in the cost of lives, human suffering and money to have acted on the side of caution and offered a safety net before risking public health.
If you were to sit down and talk to the people living in these disease clusters you could gain a wealth of knowledge, often providing great insight into factors overlooked by researchers, policymakers and public health officials. There‘s a great deal that can be found and learned through public records. Information on water, air and geological history, utilities, business, industry, public transportation, schools, military history, toxic waste sites and other sources of information that might reveal a number of possible pollution sources. A community’s history can help to confirm the existence of potentially hazardous conditions or chemicals within the community and also tell you who and where the source of pollution is coming from. This type of information tells a more complete story about the elements that make-up a community and better empowers community members to promote accountability and policy reform.
In addition to expanding research by incorporating historical data, it is important to include community members in the research process as well informed support staff. This would potentially be more economical, more effective, and would keep the public in the loop as informed participants in the research process. It would also encourage more public participation in policymaking.
Bay Area Stories
To give a more practical example of storytelling using science, I would like to contrast and compare two Bay Area locations with which I’m most familiar, the City of Richmond and Marin County. I realize I’m comparing a county with a city but for the sake of illustration I will refer to both as "communities."
At first glance, one would only see the differences between the two communities. Richmond is poor and has many underserved areas while Marin is a much wealthier and a better educated community with many support systems. Richmond has a large minority community while Marin is predominantly white. Richmond residents nearest the Chevron refinery have high rates of various cancers, cardiovascular disease and respiratory disease including high rates of asthma, especially among children. Marin County, at least on the surface, does not appear to have particularly high or unusual risk factors yet it has one of the highest breast cancer rates in the nation. Although some research has been generated in Marin, very little conclusive evidence has been found and some of the risk factors established, in my opinion, are useless. For example, some epidemiological studies have shown a correlation between breast cancer incidence in Marin and a high education level. This is obviously a ludicrous association yet it is frequently included as a risk factor in Marin County statistics. I can see the Breast Cancer Awareness Day posters now, "Fight Breast Cancer -- Stay Stupid."
There may be more similarities between the two communities than previously suspected. Perhaps in looking more deeply into each community’s history we may find one or more common links. Both communities have high rates of breast cancer and high disease populations along the coastlines. Could refinery pollution be affecting both communities through long-term water, air and geological pollution? Could radiation through fog and water drifts be a factor? How about a previous history of radioactive waste dumping in the Bay? If we studied the military history at the Richmond docks would we find a source of pollution from the military that may have long-term affects in Marin County or perhaps other communities in the Bay Area?
Finding The Answers
We don’t need to have all the answers to know that we are putting communities at risk for a variety of diseases and disorders by actively polluting and destroying our living, breathing environment. Members of disease cluster communities often know all to well the source of their pollution and its life threatening impact. They may not be able to identify specific chemicals or give you an academically eloquent definition of what’s ailing them but they can recall in great detail what their four-year-old child looked like in a lung machine. They can tell you the nightmare of being a woman whose lost both breasts in a breast obsessed society. They can tell you how frightening and heartbreaking it is to accept that your twelve-year-old child has been diagnosed with adult-onset diabetes.
The answers to many of these questions may be sitting in some musty old warehouse waiting to be tapped. There’s no reason why highly motivated and creative community members couldn’t assist in gathering existing information, both scientific and historical, with direction from a qualified research and technical staff. Once data has been collected, then a meaningful Geological Information Systems data base (GIS) can be compiled to map the risk factors shared within a community and between communities. The GIS should include water, air and geological information combined with relevant historical data. This map could then be a tool to help identify, analyze and understand environmental contamination patterns, the spread of disease and provide other health and environmental information which can be referenced later in the policymaking process.
Who Should Get Involved
At this point some of you may be saying, "This is all well and good but I’m not living in a high-risk community; what does this have to do with me?" First, I would like to make clear that we are all living in high-risk communities. Virtually all of our ecology has been compromised. Our most essential and valuable environmental element has been thoroughly polluted -- our water. If you drink water from a bottle or a filter instead of from the tap, then you are aware that your tap water may be harmful to you. Second, the problems America is having with research and policymaking is the exact same problems we’re having with doctors and corporate managed healthcare. Like researchers and policymakers, doctors and HMOs have very narrow agendas that tend to fragment a patient’s history rather than integrating it. Physicians seldom ask for a personal history from a patient beyond the survey-styled form a patient fills out upon first meeting the doctor. Researchers are making the same mistakes with community members that doctors make with patients. They look for specific pieces of information without integrating it into the larger story to more accurately and thoroughly approach a complex problem. Both doctors and researchers overlook the populace as an integral element in the problem solving process. The health of our environment, like our personal health, is a concern and responsibility of each and every one of us.
The Time Is Now
Once a community knows it's being subjected to hazardous environmental conditions, then it’s time for that community to find a way to tell its story through the blend of both scientific and historical methods. The community will then have better tools than in the past to demand environmental policy reform and accountability. This is a relatively simple concept that bridges the world of research and policymaking with the people most affected by the outcome -- the American public. A true democracy cannot exist without full participation from "the people." It is not only important, but essential, that the public participate in the research and policymaking process. This will tell a more complete human story to better facilitate researchers, empower the people and ultimately clean-up our otherwise ailing planet. Let’s redefine the word "science" to include flesh and blood people, the real world they live in, and their untold stories long overdue to be heard.
If you have any comments or experiences that you would like to relate to us regarding this subject, please contact Marleen at MQhealthpge@aol.com
PLEASE NOTE: The above article must not be published in either electronic form, or print, or be edited or otherwise altered or used without the express permission of the author Marleen M. Quint. All rights reserved. www.wildcelt.com 2005
References and Resources:
An Example of the Precautionary Principle at Work: Endocrine Disruption www.gdrc.org/u-gov/precaution-2.html
State of the Evidence
What is the Connection Between the Environment and Breast Cancer?, 2004
Breast Cancer Fund and Breast Cancer Action
Communities for a Better Environment (CBE) 1611 Telegraph Ave., Oakland CA 94612, (510) 302-0430
Radiocesium in North San Francisco Bay and Baja California Coastal Surface Waters
Journal of Environmental Radioactivity (2002)
Alan M. Volpe, Bryan B. Bandong, Bradley K. Esser, Gregory M. Bianchini
Marin Breast Cancer Watch (MBCW) http://www.breastcancerwatch.org/
DR.EDDY'S CLINIC & AYURVEDA SCHOOL - Integrated Medical Clinic & Ayurveda School is a unique healthcare facility, combining the strengths and knowledge of both traditional western and alternative medicine in a holistic manner.
Marleen M. Quint
Originally from Hawaii, Marleen was also raised in Japan and Guam. Her background is extremely eclectic and ranges from working in the field of cartography to performing as a singer, dancer and actress.
In 1990, Marleen was diagnosed with thyroid disease followed by breast cancer less than two years later. She lost both breasts and her thyroid with no family history that would predispose her to either disease. After much research, Marleen is convinced that environmental pollution played a significant role in the development of her life-threatening diseases.
Since 1995, Marleen has dedicated herself as a women's health advocate. She has served as a consultant for several health organizations including the National Cancer Institute in Washington, DC and UCSF Mt. Zion Cancer Center in San Francisco.
Marleen has combined her skills to develop a women's health presentation which delves into the connections between the politics of gender bias and the level of morbidity suffered by women. Marleen is an active speaker in the San Francisco Bay Area.