Wednesday, October 22, 2008

The candidates are talking about it, the pundits are talking about it, everyone is pointing fingers and assigning blame, but it turns out Billy Joel was right – the epicenter of the problem is somewhere near Allentown, PA. Yahoo News reports that Elizabeth Feudale-Bowes, aka the woman in "the bubble," is causing real estate values to tumble in her neighborhood, creating a ripple effect that is scarring the whole nation.

Feudale-Bowes lives in South Whitehall township in what looks like a modern steel-and-porcelain shed, not so different from what you would pay a hefty sum to purchase if you were buying it from a hipster shed company such as MetroShed. Granted, her accessory dwelling has a little bit of a 4-H agricultural tent feel to it, but the environmentally-safe 160-square foot residence is more aesthetically pleasing than most safe dwellings I have seen (and certainly most dilapidated sheds). Paranoid neighbors are terrified that Feudale-Bowes living space is "unstable and so unsightly it could drag down their property values" and thus a judge has ordered her to tear it down by the end of the month, citing permit violations.

What was the name of that 4-H animal that was smeared with blood and sent to the edge of society to repent for their sins? Do these neighbors not realize their property values are plummeting for reasons other than a sick woman living in a structure slightly bigger than an animal pen?



Feudale-Bowes has environmental illness, aka multiple chemical sensitivities. She was diagnosed by the nation's preeminent MCS specialist, Dr. William Rea – a man so heroic that, like many doctors with MCS, he has been living under threat of having his license revoked. Many people with MCS appreciate Feudale-Bowes shantytown style of architecture, since they spearheaded the green shabby chic movement that has been co-opted by many small-scale green builders. A number of people with MCS in fact live in makeshift structures in a makeshift community outside of Dallas, for the sole purpose of seeing Dr. Rea for medical care. Their "homes" are typically old pull trailers that are lined inside with many coats of special sealants designed to seal in chemical components, or special builder's foil and foil tape, often with some of the soft innards ripped out, perhaps replaced by steel box springs and organic blankets.

Many MCS patients are not lucky enough to afford adequate housing or medical care and live like refugees, driven out of their homes by building toxins and forced out of society by the toxins in daily products. They live in their cars, in wire cages, in tents, or in renovated trailers (homeless shelters are not fragrance and chemical free and thus inaccessible to people with MCS). The Environmental Health Coalition of Western Massachusetts did a survey and found that 57 percent of people with MCS had been homeless at some point since becoming sick. I don't know that there is any other population in America that rivals this level of homelessness, but the problem is not being addressed. A friend of mine, who finally found refuge in one of the few places with MCS acceptance, left me a tearful message the other day in which she said, "I am not living like a refugee – for the first time in my adult life." This friend was homeless for years due to MCS.

A few lucky patients have eventually found the means (typically after many years of struggle and loss) to either renovate homes to MCS-safe standards (as I have done) or build nontoxic residences. However, people with MCS are still almost universally ostracized in their communities, and life with MCS is undeniably lonely. My PCA who has MCS mentioned to me yesterday that most of us with MCS have all been "labeled" in our small towns in Massachusetts. Hearing this made me so self-conscious. I'm not sure what kind of freak label I'm wearing where I live, because I'm so exiled from my community, but my interactions with the "outside" frequently remind me that my illness is barely being tolerated.

I still feel fortunate that I have no neighbors within eyesight of my front door, as my last dwelling was a small city apartment and I got very ill from the wood smoke and laundry vent fumes from my neighbors. Some of my friends with MCS have lived with hostile neighbors who knowingly sprayed pesticides or other chemicals in their direction, sometimes with expressed intent to drive them out of their neighborhoods. These were, of course, violent acts of assault but law enforcement wouldn't do anything about it. Those of us with MCS have come to expect neighborhood hostility. We often try and create a land buffer from neighbors so they can't harm us, live close to other people with MCS, or to try and educate our neighbors so they won't turn against us. We have the rare disability designation of knowing our neighbors could possibly murder or recklessly endanger us and get away with it. Someone in the MCS network is always under fire. I serve on the advisory board of an MCS organization that frequently receives letters from people with MCS who are being driven out of their homes and neighborhoods and don't know what to do. The stories are heartbreaking, because nobody is offering enough funding to create real solutions (Brad Pitt – are you listening?).

It is fair to say that Feudale-Bowes' neighbors are oozing with hostility in this article, although they keep reverting to the permitting argument. "Some neighbors question whether her ailment is genuine," reports the article. "But they and others say the main issue is the couple's disregard of the zoning rules." I hate to have to explain the ableist subtext here, but it's something like, "We don't believe that crazy lady is actually sick, so let's toss her out of her bubble and see if she vaporizes." Does this remind anyone of the Medieval ordeal known as "trial by drowning," in which women accused of witchcraft were thrown into a body of water to see if they would float – since witches were said to float -- and they would either sink to their deaths or be hanged or burned at the stake?



Feudale-Bowes does seem to have fairly severe MCS. She has to stay in her bubble 10 hours a day, even though she and her husband also own a Lustron house – a very sought after item in the MCS community. Lustron houses were built as wartime structures in the 1940s. They are made of prefabricated porcelain-enameled steel to go up quickly and last a long time, and steel and porcelain are often well tolerated by people with MCS. Most houses nowadays are built with wood (which, even in its pure forms, leeches terpines that MCS people often cannot tolerate), manufactured wood products (such as sheathing, which contains formaldehyde), tarred roofing, formaldehyde-laden cabinetry, toxic carpeting, vinyl-clad windows, and other products that outgas toxic chemicals into the living space, making them uninhabitable to people with MCS.

Even houses built without these products, or older homes that have already outgased, contain many hazards for people with MCS: pesticides, gas appliances, cleaning products, etc. The fact that Feudale-Bowes cannot even live in a Lustron house and had to attach and accessory dwelling probably means her MCS is severe. Chemicals are likely, as she claims in this article, life-threatening to her. At the very least they cause her excruciating pain and other symptoms such as "migraines, joint pain, bladder inflammation, seizures and temporary paralysis."

Dr. William Rea has written about MCS deaths caused by chemical exposures, typically involving organ failure. People with MCS know about and hear about such deaths, but the living typically keep a low profile: we don't want to be next. To say Feudale-Bowes is generally fearing for her life right now is, I'm sure, no understatement. Where else is she going to live? Winter is approaching, and it is not a good time to pitch a tent.

What exactly is infuriating these neighbors so much? According to the article:

Thomas Kelly, 53, who lives across the street, said that while he feels sorry for Feudale-Bowes, her husband "just did whatever he pleased."

"We don't live like that," he said. "We live in a society governed by laws."

But Feudale-Bowes said: "If I don't live like this, my pain level is so severe that I can't function, I can't live, I can't survive. It's excruciating."


It seems to be something about lack of conformity, about the individual's inability to adapt to "a society governed by laws" that often requires sellers to spray pesticides around the perimeter of a structure to pass a housing inspection, or requires green builders to jump through hoops to build a straw bale house. There is another term for a lack of biological conformity: disability. And disability is what seems to be irking this guy. Feudale-Bowes' husband, Craig Bowes, said plainly, "My wife's not a lawn mower, and I didn't put up an illegal shed just to mess with the township." His statement says it all: if his wife was a lawn mower, the public outrage might make sense, but she is not a lawn mower: she is a human being with a life-threatening condition and nobody is providing a viable housing alternative.

Moreover, and sadly, her neighbors know that she actually is, socially, a lawn mower: they can push her around with no recourse. Her threats to pursue this issue under the Americans With Disabilities Act will probably go nowhere, if prior MCS cases are any precedent. Until society decides that people with MCS are not lawn mowers, people with MCS will be treated like lawn mowers. Societies governed by laws are great unless those laws are, say, Jim Crow. Or Apartheid. Or other laws that categorically exclude some members of society.

Has anyone asked Feudale-Bowes or her husband why they didn't obtain the necessary permits to put electricity and plumbing into her structure? I can wage a theory. In my personal experience, finding a contractor who won't infuse the walls of my house with fabric softener stench for days or weeks on end is extraordinarily difficult. Fabric softener alone, to a person with MCS, is like a nerve gas bomb set off in the house. The odor sticks to the walls and it takes a long time to air out the structure afterward to make it safe. Fragrance molecules are designed to be "sticky" and leave a residue. Anyone who has ever bought a used car with fourteen cardboard air freshener trees hanging from the rear view mirror knows what I am talking about. Or perhaps an easier analogy for most people is cigarette smoke: it does not dissipate when the smoker leaves the building. A smoker's house will always smell like smoke.

Beyond the licensed contractor issue, there is the issue of finding people who understand the principles of MCS-safe renovation. There are only a handful of known experts in MCS-safe building around the country. Green builders are often open to hearing about MCS-safe renovation, but their priorities are slightly different from those of MCS-safe builders. For example, basic wiring can be a problem for people with MCS, who often suffer from electromagnetic sensitivities and need specialized wiring in their homes. Plumbers typically use toxic glues to seal their pipes that reeks for weeks or months on end, and aren't very willing to use alternative products. If a plumber simply does what he has been trained to do, or an electrician ignores specialized instructions, Feudale-Bowes could lose her safe structure, and the toxic damage might be impossible to remediate (plus, obviously, she can't stay in a hotel while some stinky contractor is stinking up her safe space). This is the basic reason why she probably had her husband install the pipes, or did it herself. She didn't want to get sicker or die.

Housing accommodations are made all of the time for people with other disabilities. There is absolutely no reason why a judge cannot see this for the exceptional case of housing discrimination that it is. "For the wife's medical problems, there is sympathy," states Judge Carol McGinley. "For the owner's defiance of the township's lawful directives, there is no excuse." The judge is adopting quite a tone of condemnation against Craig Bowes: surely this guy should be run out on a rail for putting up a metal shed. I'm sure no dude in Pennsylvania has ever erected a shed without a permit!

Meanwhile, I wonder what is happened to the local batterers in South Whitehall who are beating their disabled wives instead of helping them? Disabled women are at least twice as likely to be abused as non-disabled women, and their intimate relationships are often riddled with violence. Given that reality, and the social climate that cushions such violence against people with disabilities, perhaps Judge Carol could act neighborly and use her energy for a real cause, and crack down on the men in her community who use their hands for violence instead of salvation. Meanwhile, I hope the rest of us can do something to prevent this horror before another witch (i.e. extraordinary woman) drowns in a sea of social ignorance.

2 comments:

VardoForTwo said...

Dear Peggy, I have arrived at your blog through Susie Collins' The Canary Report. I too live with MCS with a history of diaspora ... fleeing the poisonous apples of society just as you described. Your follow-up on our sister in the shed is the kind of detail and exposure that ought to shake more people into awareness and open them to compassion.

It takes such an agonizingly long time to make change. My husband and I are building a safe and mobile VARDFORTWO for all the reasons you sight in this post. The process is challenging because SAFE HOME means something different first compared to 'what is normal in society' and then different for each MCS Tribal Member. The challenge to build a safe home is huge, the alternatives are deadly.

Thanks for your voice, we need you.
Mokihana

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