by Pamela Reed Gibson, Ph.D.
James Madison University
Originally part of an article named 'Understanding & Accommodating People with Multiple Chemical Sensitivity in Independent Living'.
CURRENT HOUSING CONDITIONS FOR THOSE WITH MCS
Housing may be the single most crucial element in survival and possible improvement for someone with MCS. Yet it is almost impossible for people with MCS to find places to live that are truly safe for them. Housing may be their most difficult challenge, a challenge greater even than for people with other disabilities. Toxic chemicals such as formaldehyde, and those found in glues, paints, new carpet, and pesticides are commonplace in construction of all types. In addition, it is impossible to control what occurs beyond one's property lines. City dwellers are subject to industrial emissions, vehicle exhausts, toxics used by neighbors such as lawn chemicals, and a myriad of other poisons. Rural dwellers are exposed to farm chemicals that include pesticides, herbicides and chemical fertilizers. All traditional pesticides and herbicides are extremely toxic. In fact, some insecticides were first mass-produced as chemical warfare agents for World War II. The use of pesticides is now so widespread it is almost impossible to avoid exposure to them. We use these chemicals on our pets, our food, our land, and ourselves. Between the widespread occurrence of toxic building contaminants and the tremendous cost of home cleanup, few with MCS actually live in truly safe conditions. Those who do may have spent their life savings to redo their homes, or may be living beyond their means to afford a home that is isolated enough to avoid neighbors' toxins.
It is imperative for the person with MCS to create the cleanest possible living space. This cleanup requires learning about everyday toxics and safer alternatives, and demands at least some financial investment. Respondents in my treatment study had spent an average of $57,000 to replace toxic carpeting and furniture, buy water and air purifiers, or move if their home could not be cleaned up. A few with enough money built homes out of safer materials, but this requires considerable investment of time, money, and energy. Those who have built their own homes report that it is necessary to supervise every aspect of the project, including inspecting every item that arrives for use. One must be on guard for contractors substituting less safe items and materials not being as represented. If someone has the resources to be able to build a safe home, there are a number of good resources and consultants to help with the process.
Even though it is important for every person with MCS to try to create as safe and chemical free living space as possible, only about 40% of people in my life impact study said that they lived in safe homes. A slightly larger group (44%) said that their homes should be better. And 16% said that their homes were not safe. The Environmental Health Coalition of Western Massachusetts' housing committee found that three quarters of the 49 people with MCS in their housing study had had to stay in places that made them sick at some point. Almost half had spent more than they could afford to stay in safe housing. And over half had encountered landlords who were unwilling to accommodate their MCS.
Some people in both studies were unable to tolerate any traditional housing due to chemicals used in construction, and contaminants left by previous tenants/occupants, and, as a result had lived in substandard and unusual conditions. The Environmental Health Coalition of Western Massachusetts' housing committee found that 10% were homeless at the time of the survey and another 10% lived in situations such as campers, trailers and cabins (Wachsler, 2001). People with lower incomes were most likely not to have adequate housing, with almost half of those with incomes under $12,000 having substandard or no housing. Two-thirds of my respondents had lived in unusual conditions such as in RVs, tents, cars, or porches at some point since developing MCS. One respondent in my research had lived in her horse trailer for a year. The following woman's experience is typical of the nomadic lifestyle that some people are forced to adopt:
I have slept outside summer and winter for about 12 years now - including 30 below - windows open - bundled up and using soapstone rocks to keep bed warm - unheated little building. Have slept under homemade mosquito netting under a pavilion - anchored around chairs for weeks - slept in borrowed tent, borrowed trailer - borrowed camper - have slept on relatives' and friends' porches outside for weeks when roadwork done at my house - have commuted for essentials.
I believe that MCS is an important and unrecognized contributor to homelessness. As people disappear from a visible lifestyle and adopt coping mechanisms such as living on porches and in RVs, they approach the divide between those with and without homes. When they slide over that divide there is no record of it and they disappear. Some go to live in tent communities in the Southwest, but for others it is even worse than that. One woman in my most current study sent me a drawing of her "home," which consists of a wire mesh cage to sleep in. Because she must sleep outdoors, she has constructed this cage to protect herself from dogs and wild animals. Her home is literally a five-foot cage. Gail McCormick, in her book, Multiple Chemical Sensitivity: Narratives of Coping, interviewed a young woman who must sleep outside under a tarp because of her inability to tolerate indoor environments. She lives a nomadic lifestyle moving from place to place in search of safe conditions. Her mother often travels and camps with her, but at times herself needs a break from the rugged lifestyle. Her daughter sleeps outside in the woods while she rents a hotel room. But if there is a wind that blows the tarp down, her mother must get up at night, drive to where her daughter is sleeping, and cover her up again with her tarp because her daughter is too weak from chronic fatigue to get up and retrieve her own tarp. Some would say that these are extreme living conditions even for the homeless. Yet these struggles are all too frequent among people with MCS and remain virtually invisible to the mainstream culture.
One Alternative Model: Ecology House
Ecology House is an eleven-unit MCS apartment complex in San Rafael, California that, although not perfect in terms of its urban location, is a controlled MCS living space. The arrangement allows people with MCS to actually live in community with others. People have different opinions as to whether funding for people with disabilities should be spent on segregated housing for people with the same disability. But Connie Barker, a resident of Ecology House, described the benefits of living there in preventing total isolation of the residents in the IL NET teleconference on MCS (2/20/02). Connie phoned in and described no longer being the "mad woman in her parents' attic," but rather being able to have some sense of community with people who understand her disability. People with MCS spend a lot of time explaining themselves to others and usually are still not understood. Living where other people understand your needs saves valuable energy and time that can be put into creative and constructive pursuits. Although there were a number of problems when Ecology House was built such as difficulty with materials that were supposed to be inert but actually outgassed significantly, it is now working well. Connie reports that there are three or four people there who have gotten substantially better as a result of living there. There is a long national waiting list of people interested in becoming residents.
Connie explained that building with safer materials for MCS housing is only half the battle. Property management is equally important. At Ecology House residents are notified by the building manager no matter what is done and what materials are used. They speak of "safer" materials rather than "safe" because every person's sensitivities are so different. When work is to be done at Ecology House, residents are given ten days notice and material safety data sheets (MSDS) for the products to be used are provided. A resident has ten days during which to suggest an alternative material if he or she is concerned about the proposed product's safety. Ecology House is described well on the Web site www.ecologyhouse.org.
HOW DOES ONE CREATE A SAFE LIVING SPACE?
By the time a person comes to you for help she or he may be in an almost impossible situation regarding housing. The person may be homeless, living in a car, or in housing that is making her or him sick. You may hear stories about past and ongoing housing problems. There may be a need for financial assistance to create even a marginally safe living space. The person needs somehow to create the cleanest living space possible within her or his means.
Assess the Outdoors
The person first needs to assess the outdoor environment of any potential living site to be sure that the area is not subject to fumes from industry, heavy traffic emissions, pesticide spraying by the city or by close neighbors, emissions from neighbors' gas appliances, laundry exhaust and laundry product fumes, or electromagnetic frequencies from cell phone towers or other sources.
Laundry product fumes such as those from scented fabric softeners can be difficult to detect on a single site visit because of their intermittent use. But their presence is important to determine because they can cause severe reactions in some people. Some suggest camping outside for a couple of days at a prospective home to find out if neighbors use such products. However, even if none are detected, people can still change their products and start using them in the future. This is just one example of the tremendous difficulty that people with MCS face in finding housing. Further investigation might involve calls to potential neighbors or to the municipality to inquire about the use of pesticides or other toxics, driving around a large perimeter looking for potential pollution sources, visiting the site at all hours to observe the conditions there, and other methods.
Mold exposures can also be a problem for a person with environmental sensitivities. The presence of molds in residences can be difficult and expensive to deal with. They typically occur in damp areas such as those with heavy rainfall, high humidity, or near oceans or other bodies of water and/or in houses with roof or plumbing leaks or after other flooding.
Cell phone towers, overhead power lines, or similar sources of electromagnetic radiation and electromagnetic fields need to be examined also. For example, it is probably not advisable to lease a second floor apartment with power lines right outside a window and/or a transformer box mounted on the pole in front of or behind the house. Also best avoided is an apartment, condo, or other multi-unit situation where the power panel for the whole complex is on the exterior wall of one of the bedrooms.
Assess to the Indoors
The person with MCS needs a home free of ALL petrochemical heat and cooking sources, pesticides, conventional cleaners, solvent-containing paints, formaldehyde-emitting furniture (foam and pressed board), perfumes and air fresheners, tobacco smoke, and other volatile chemicals. Some need the home to be free of animal allergens as well. The house should not be moldy; old homes and those with damp cellars are the most likely to have this problem.
Petrochemical heat is a sensitizer and dangerous for any person with MCS. Even if the heat is indirect (as in radiators where the fuel does not directly enter the living space), you still have the possibility of spills during delivery, leaking tanks, and other accidents that can render a home uninhabitable for someone with MCS. Heat sources need to be electric, solar, or at the very least, hot-water baseboard with the fuel tank outside of the building. Although I still don't endorse this option, some people with MCS live with petrochemical heat if the heat source is at a great enough distance from the living space and the fuel source is not a direct one.
The person should inquire about the pesticide history of a potential home by questioning the landlords, builders, or neighbors. Formaldehyde impregnated building materials such as particle board emit considerable formaldehyde particularly in their first year and continue to outgas for ten or more years. Better construction materials include exterior grade plywood, as it contains a lesser amount and a less toxic type of formaldehyde (phenol formaldehyde rather than urea formaldehyde). Interior grade plywood may outgas formaldehyde as much as the particleboard. Cupboards and other visible particleboard products can be sealed with less toxic products designed to prevent outgassing of fumes. However, people who have tried this suggest that it might be safer to simply replace particleboard or other composite board cupboards with old-fashioned metal or glass shelves and cupboards or to cover the particleboard with aluminum or steel foil, whatever is tolerated best.
Conventional carpet may emit dangerous volatile organic compounds (VOCs), dyes, formaldehyde, and worst of all, 4-phenyl cyclohexane (4-PC). In October of l987, the EPA began installing carpet in its Waterside Mall headquarters in Washington, D.C. The EPA received 1,141 health complaints from employees, but unfortunately took two years to remove the toxic carpet. Some employees became permanently sensitized from the experience; some are permanently unable to work in the building, and some are unable to work at all. It appears that the 4-PC may be the most dangerous element in carpeting. People with MCS do best in uncarpeted spaces, i.e., those with tile, brick, wood, or old linoleum floors. For some, older carpet (8 or more years old) may be ok, but for those with dust allergies, no carpet may be tolerable. If a space seems ok except for the carpet, it is sometimes possible to make it tolerable by covering the carpet with cotton sheets or area rugs and or getting permission to remove the carpet while living there.
Choosing a Home and Making it Safe
Once the person has chosen a living spot he or she needs to be as strict as possible about the purity of anything that goes into the home. The more sensitive the person the more careful he or she must be. Making a clean home requires becoming knowledgeable about paints, fabrics, carpet (better not to have any), cleaners, natural bug control, and water and air filters. Although filters do not completely compensate for dirty air or unsafe water, many people with MCS use them to improve their air and water quality. There are a number of types of filters available. While it can be tedious at times, a person with MCS is best advised to learn about them and decide which ones might be useful.
One theme that has emerged in an inquiry by the Chemical Injury Information Network (CIIN) is that some people with MCS attempt to compensate for unsafe homes with filters, supplements, and treatments (Wilson, 2001). People should be discouraged from doing this, as it is rarely possible to make up for an unsafe environment by trying yet another treatment.
Provide any financial aid possible if needed for cleanup. The person may need air cleaners, water filters, replacement items for unsafe items in the home.
Guide the person toward resources for non-toxic living. The following resources are an excellent start:
Baker-LaPorte, P., Elliot, E., & Banta, J. (2001). Prescriptions for a Healthy House: A Practical guide for Architects, builders and Homeowners. New Society Publishers. www.newsociety.com Phone: 800-567-6772
Berthold-Bond, A. 1999. Better Basics for the Home: Simple Solutions for Less Toxic Lifestyle. New York: Three Rivers Press.
Berthold-Bond, A. 1990. Clean & Green. Woodstock, NY: Ceres Press.
Bower, L. M. 1995. The Healthy Household.
Bower, J. 1997. The Healthy House: How to Buy One, How to Build One, How to Cure a Sick One.
Bower, J. 1997. Healthy House Building: A Design and Construction Guide.
Bower, J. Understanding Ventilation: How to Design, Select, and Install Residential Ventilation Systems.
"Your House, Your Health: A Non-Toxic Building Guide" (VHS video). Note: The Bower books and the VHS video are available from The Healthy House Institute, 430 North Sewell Road, Bloomington, IN 47408. Phone: 812-332-5073; Web site: http//:www.hhinst.com/
Ingram, C. 1991. The Drinking Water Book: A Complete Guide to Safe Drinking Water. Berkeley, CA: Ten Speed Press.
Lawson, L. 1994. Staying Well in a Toxic World: Understanding Environmental Illness, Multiple Chemical Sensitivities, Chemical Injury, and Sick Building Syndrome. Lynnword@aol.comLawson's book is an excellent overview of environmental hazards and has been referred to as "The Silent Spring of the 90s."
Lynn Dadd, D. L. 1990. Nontoxic, Natural, and Earthwise. New York: Putnam.
Marinelli, J., and P. Bierman-Lytle. 1995. Your Natural Home. New York: Little Brown.
Olkowski, W., S. Daar, and H. Olkowski. 1991. Common Sense Pest Control: Least Toxic Solutions for Your Home, Garden, Pets, & Community. Newtown, CT: Taunton Press.
Pearson, D. 1996. The Natural House Catalog. New York: Fireside. This book is a broad overview of environmentally friendly buildings, products, organizations, and resources. Extensive resource list, e.g., there are sixty-seven companies listed just for paint.
Rousseau, D. 1997. Healthy by Design: Building and Remodeling Solutions for Creating Healthy Homes. Point Roberts, WA: Hartley & Marks. Described as an "architect in a book" how-to manual for siting, heating, ventilating, water, materials, finishes, etc.
Rea, W. J., and J. Enwright. 1988. Your Home, Your Health, & Well-Being: You Can Design or Renovate Your House or Apartment to Be Free of Outdoor and Indoor Pollution. Berkeley, CA: Ten Speed Press.
Rousseau, D., and Wasley, J. 1997. Healthy by Design: Building and Remodeling Solutions for Creating Healthy Homes. Point Roberts, WA: Hartley & Marks.
Stein, D. 1994. Least Toxic Home Pest Control. Revised Edition. Summertown, TN: Book Publishing Co.
Wilson, C. 1993. Chemical Exposure and Human Health. Jefferson, NC: McFarland & Co., P.O. Box 611, Jefferson, NC 28640. Phone: 910-246-4460. Orders: 800-253-2187. An excellent reference to 314 chemicals. Information can be accessed by both symptom and chemical name.
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