Cassandras Rather than Canaries

As a metaphor explaining the far-reaching consequences for those of us with environmental health conditions, the Canary in the Coal Mine works: Miners used to take caged canaries along with them down into the coal mines because, when exposed to toxic and noxious gases from the coal, canaries are guaranteed to suffer ill health effects, dying far sooner than their human carers ever would. If a canary carked it or became sick or distressed, it was a sign to be heeded—a prophetic warning: the miners needed to get the hell out. (We who’re sensitive to chemicals are the canaries; the rest of you who’re reading this are the miners. Welcome.)

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More from the Grammarist on actual canaries in coal mines:

The practice was phased out, at least in the U.S. and the U.K., by the late 20th century, but the phrase canary in the coal mine lives as a metaphor for any warning of serious danger to come. The canary is not prophetic until it is brought in the coalmine, so the metaphor works especially well if the prophetic thing is small, innocent, and not prophetic under normal circumstances.

The metaphor weaves for us a rich tapestry clearly showing the predicament our world is in with more and more people becoming chemically sensitive. A yellow canary is often used symbolically for Multiple Chemical Sensitivity (MCS) (also known, in some parts of the world, as Environmental Illness (EI)). As much as I like these birds, I’d much rather share a comparison to an eagle or a phoenix, a cockatiel even, because symbolically, canaries carry connotations of fragility and weakness. But that’s the point; isn’t it? And, often, these birds are kept locked up in cages: there are many chemically sensitive people who are forced to imprison themselves to avoid—or cut back on—chemical exposures. As I write this, housebound, it’s uncomfortable having a bird that’s often kept in a cage represent me (and my chemically sensitive brothers and sisters). Paradoxically, at the same time, it’s kinship I feel whenever I see an image of a canary on someone’s website or social media page.

On the whole, the canary, as a symbol, and the Canary in the Coalmine, as a metaphor, work well together to get people to understand our predicament. But does this metaphor actually fit the reality of our situation?

In 2001, Gillian McCarthy, who has experienced an extremely serious case of Multiple Chemical Sensitivity and, therefore, is someone who should absolutely be listened to, authored a piece titled, Canaries or Cassandras?, published over at MCS Aware. She points out the missing element in this Canary in the Coalmine caper: the canaries’ warnings were headed! 

Often/sometimes, ours (the people who are chemically sensitive) are ignored or we can be told we are mentally ill/being difficult/or neurotic.

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What? My Illness is Psychogenic?

 

More from McCarthy:

It is my contention that MCS victims are not the “Canaries‟; they are the “Cassandras‟ of the 20th/21st Century. When coal miners‟ canaries reacted to carbon monoxide, the miners didn’t abuse them, tell them they were psychiatrically ill or refuse them proper food and shelter; they took notice and acted accordingly!

Cassandra, on the other hand, was the daughter of King Priam of Troy. She was endowed by the god Apollo with the true gift of prophesy, but because she would not let him have his “wicked way‟ with her, he then condemned her prophesies to eternal disbelief. She correctly predicted the Wooden Horse of Troy and was “stoned‟ by the people of Troy for her trouble. This “shoot the messenger” trait is much in evidence amongst the medical*, scientific* “flat earthers” as well as the vested interests* who gleefully fuel and manipulate their ill-informed and out-dated misinformation* in an attempt to discredit MCS as a diagnosis, the doctors who diagnose and treat it and, disgracefully, the often very poorly patients whose lives have been devastated by the condition.

Personally, I’ve had my own experiences where I’ve not been believed. By someone who I was close to. I guess it was just too inconvenient to accommodate my illness… ? Even just this year, I had a visit to a doctor, an Ear Nose and Throat (ENT) specialist, who told me that he doesn’t believe my condition exists, “Those people who say they have MCS… it’s all psychogenic”, he said while gesturing across the room as if talking about a group of invisible people sitting there. Talk about people having screwed up belief systems!(You know, I didn’t say to this doctor that I had MCS, as my diagnosis is inhalant allergies with chemical sensitivities, however, due to needing to undergo a medical procedure, I did give him the MCS Hospital Guidelines!)

Ergo, 98% of my visits to specialists and the like have been positive; I’ve always felt believed and accommodated (in fact, until now, I’d never considered the idea of not being believed!). However, because I’ve had that experience with the ENT, I now know what evil can lurk behind a smile and a white coat.

I even know where the mythology of MCS and psychogenic theory stems from: In 1998, Stephen Barrett MD, a psychiatrist who never even passed the bar exam and author of Multiple Chemical Sensitivity: A Spurious Diagnosis, and Ronald Gots, a paid specialist in the areas of litigation, regulation, environmental/occupational medicine, indoor environmental matters, toxicology (and provider of scientific/medical support in individual tort and mass tort claims, involving a range of biological and chemical agents, as well as pharmaceuticals) cowrote the book, Chemical Sensitivity: The Truth About Environmental Illnessfull of the kind of psychogenic theories that form the basis for modern day discrimination and alienation of chemically sensitive people today.

By spreading misinformation on MCS, Gots, Barrett (and another flat-earther, Herman Staudenmayer) have done an enormous disservice to a multitude of chemically sensitive and possibly disabled individuals everywhere.

More from author of The Best Science Money Can Buy, Will Moredock, on The Environmental Illness Resource (EiR):

To fight its PR wars, the chemical industry created something called the Environmental Sensitivities Research Institute, which seems to be modeled after the Tobacco Research Institute. TRI has been pumping out misinformation and questionable data for decades, trying to keep the waters muddied on the health effects of smoking. Funded by such corporate giants as DowElanco, Proctor & Gamble and Monsanto, ESRI is headed by Dr. Ronald Gots, who also runs the National Medical Advisory Service, which provides expert witnesses to defend chemical corporations in tort lawsuits.

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Is this Stephen Barret from Quackwatch?

This is not okay with me; still, I’m ready to fight the good fight. But from a historical perspective, and, as McCarthy points out, look at what chemically sensitive people had (and still have) to live through—even just fifteen years ago, back when she wrote this:

MCS is truly a Cassandra Syndrome—and ironically, more than one seriously ill sufferer has had stones thrown at their homes – myself included. All the MCS sufferers I know, young or old, totally crippled or moderately functional, have had varying degrees of abuse and derision thrown at them—rather like lepers in the Dark Ages and beyond. Why? MCS isn’t catching—(although family members and nurses have been made ill by the sweat of detoxing patients—by direct contact).

Clearly the authorities ignore/deride/abuse sufferers:

a) to try and avoid spending money in the short term, although the cost of increasingly disabled sufferers kept ill by ignorant, culpable neglect in the long term is rising,

b) because of nebulous fears that if they acknowledge the condition, somebody might sue them—although all the sufferers I know are more interested in getting treatment and controlling their illness, but are more likely to sue if pushed into a corner by the passive/aggressive neglect of those authorities,

c) because some authorities (and some individuals within those authorities) are manifestly influenced, knowingly or unknowingly, by vested interests likely to be damaged by any acknowledgement of its reality and must therefore be avoided at all costs. The trouble is, the cost may be relative peanuts to the vested interests, but it is costing lives, livelihoods and lifestyle of the sufferers and their families and connections.

Why do members of the public, GPs, neighbours, even fellow religious groups/church members and some family members also match this stance—like the good, but misguided, citizens of Troy, often in a shockingly aggressive or at best, dismissive and hurtful way. These same people would not dream of saying to a diabetic (who has a much more simple condition to manage) “what you need is a big box of chocolates”, will readily say to a desperately hungry MCS sufferer miserably existing on millet or buckwheat because that’s all they can keep down,—“what you need is a damn good meal”. If only!

Why did the people of Troy stone the very person who warned them of danger? Fear. Fear of the unknown, fear of the implications for them, fear of the consequences, et al. This problem is here, but is seen as being too big to “get their heads round” and therefore goes unacknowledged. People feel cornered and confused and in their fear and ignorance they lash out. They blame the victims. Sadly, they may soon join the victims, if they have not already unknowingly have done so—with their as yet “unconnected” string of end-organ dis-eases*.

McCarthy shares with us some of her own personal story:

I am one person who has been comprehensively lashed out at since I was first (organo chlorine) poisoned in 1972 and multiply organo phosphate poisoned from 1974 onwards and subsequently diagnosed with MCS in 1983, after years of desperate health problems and many mystified doctors. I am not an “isolated case”*. I am frequently told I am one of the “worst affected” sufferers living (although my existence can hardly be said to be called living).

My story, and that of the many other “allegedly” isolated cases of MCS is a salutary reminder that “there but for the Grace of God…”. The story of those who have lashed out at me, to continue the Biblical allusion, is graphically encapsulated by “scorners delight in their scorning and fools hate knowledge” (Ecclesiastes 1.18).

You too could lose your career, your health, your home, your car, your treasured possessions, your lifestyle, and like some sufferers, your marriage, your children in to Care, indeed your very life—if you are struck down by MCS and consigned to the “mercy” (sic) of the British Medical Establishment and Authorities and “Care” and Housing Authorities, once you have exhausted your own financial resources—triggered because an error is made treating your office for cockroaches, or you get sprayed walking your dog past a field, or you habitually lick your golf tees on a golf course sprayed with Ops, or joyfully move into a new home which has been furnished with MDF furniture and carpets treated with toxic chemicals—just after a dose of flu has compromised your immune system. One sufferer I know has been badly affected since she lay in a pool of diesel following a motor accident, until she could be cut from the wreckage. It can be that simple—it could happen to you, like other sufferers, through no fault of your own!

A recent sycophantic review of a book debunking Green Issues in a national Sunday newspaper sneeringly referred to environmentalists as “environmental Cassandras” – erroneously forgetting that the trouble with the much maligned Cassandra is—she was always right!! (I hate to tell you this…)

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Enter the Trojan horse (my favourite piece  of writing by McCarthy):

The insidious and cumulative incursion of harmful, often xenobiotic chemicals in entirely unresearched and potentially chemically synergistic culminations, could be the 21st century Wooden Horse that stealthily brings artificially created “improvements” under the cloak of industry-led consumerism and advertising. This conceals a rampaging horde of trouble for those it purports to shield and benefit.

By listening to naysayers while ignoring the modern day Cassandras (and their prophetism) and the canaries (and their choking on pollution and petroleum byproducts) we run the risk of predicting, while simultaneously ignoring, our own impending demise.

McCarthy leaves us with:

This new millennium is the time for a new beginning, new attitudes, new perspectives and approaches and a new positive principle of humanity towards sufferers, whose condition doctors don‟t always comprehend – but that does not mean they should be denigrated, demeaned and disbelieved because they do not “fit‟ any of the ailments for which the doctors have been trained. We pride ourselves on our kindness to animals, now it is time to be kind and take note of your Canaries before you too are poisoned and brought to your knees.

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You can read the rest of McCarthy’s ‘Canaries or Cassandras’, here

Post, written by Michellina van Loder from the blog The Labyrinth and Finding My Way Out, may be reprinted and distributed freely. Please reblog…

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Patrick Pontillo: MCS Denier, EPIC Takedown #2: Doctor Jekyll and Mr. Formaldehyde

Myths and Facts About Chemical Sensitivity

Michellina Van Loder is a Professional Writer, Journalist and Blogger. This is where she shares her tales about trail blazing her way out of the Labyrinth of Chemical Sensitivities and Mould. This is also where you will find the latest Research on related topics.

How to Begin Building a House… with Ganesha

We bought our block, out on the Surf Coast of Victoria, Australia, back in 2011. In 2012 we engaged the services of EcoDesigner and Draftsperson, Quin Wyatt, hoping he could help us create an allergy-free, eco-friendly home made from non-toxic, low VOC materials: a safe home capable of protecting my immune system from mould spores; a home designed with passive heating and cooling in mind; a home that’s mindful of climate change and our precious planet.

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From 2012 up until this present day, we’ve been testing materials: glues, grouts, paints, silicones, waterproofing materials, wood, cement sheeting, plaster, magnesium board—even tiles. In August 2014 we finished the design. I began the mammoth task of organising quotes and tradespeople; however, after completing this task, we ran into some foreseeable financial hiccups and have had to return to Quin Wyatt asking him to make our house more affordable: we resized our footprint. When we first designed the house, we had another family member to provide for. Now that we are empty nesters, it makes even more sense to downsize. And it will cut costs:

(Before we go any further, here’s our running joke on this situation: my partner, Dan, and I took so long designing, planning and testing materials for this house that we grew older, therefore, as empty nesters, we’ve had to downsize.)

Costs: Just a hardwood house frame—in comparison to the traditionally used terpene-emitting pine frame—costs double that of an ordinary house frame. Include all the double-glazed, thermally-broken windows, and the price has tripled in comparison to ordinary windows. But without these two factors (there are a many others too, but these are the $bangers!), the house won’t be safe for me to live in. Like most chemically sensitive people I desperately need a safe house that won’t impact on my health. My main issues are moulds (outdoor and indoor), solvents, petrochemicals, wood-smoke (PM2.5 particles, particularly). I’ve also had to organize fragrance-free and chemical-free workpeople. It’s been a buzz! And I’ve been diligently taking notes so I can share them all here, at The Labyrinth ~ and finding my way out, with you.

I’ll give you a run-down of the completed plan as soon as I can; otherwise, if I do this now, this post will be my usual 2000 word essay! [For now: think tiles, magnesium board, brick, colourbond, rainwater tanks, balconies and sea air. A vegetable garden set in the front yard—with a duck lurking in amongst the broccoli. Rabbits running free. Two boxers laying out in the sun with me: Freedom: an allergy-free eco-friendly home]

The good news: just like the draftsperson we found, we’ve managed to find some compassionate and understanding tradespeople who’ve agreed to do what absolutely has to happen for this house to ever be a safe, health-tolerable place for me to live.

(When I meditate each morning, gratitude flows from me like the flush of pink petals from a lotus flower in full bloom.)

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And, get this: we’ve rented a composting toilet and placed it on our block so the workers (and Dan and I) can use it. No obnoxious chemical fragrance fumes! (More on this in another post. You will love this!)

And luckily, I’ve just experienced a blissful summer and autumn where my health improved enough for me to have actual consecutive days where I was well. (This has not happened since 2011.) Every morning I exercised, then spent the day on the phone organising every detail I could think of; nights were on the computer, compiling notes for my book, the soon-to-be-completed book, Freedom: an allergy-free, eco-friendly home. Thankfully, during this time, most products were already tested for safety—ergo, not all, though (We are stuck at the waterproofing (balcony and bathroom) stage!)

Unluckily, due to moulds and bloody wood-smoke, since winter began—and now the Solstice has passed, which means we’re half way through—I’ve had chronic illness as my companion once again. At least this year, I can deal with it. Some days I even accept it: Yoga, meditation, a supportive partner, energy from a plant-based diet, my latest treatment: the NSP Protocol, my dog, dwarf rabbits, my internet friends, and the faith in building a safe home are getting me through.

At times though, it’s not been easy: hesitation, trepidation, apprehension: a three-headed beast has eaten me alive.

Since I’ve had these well-documented mould symptoms: upper-respiratory inflammation (dry eyes, sinus pain, facial pain, sore throat), fatigue, vagueness, headaches, depression and sadness that mimic actual depression and sadness—all dispelling once the chemical exposure and the mandatory recovery period have passed—not only am I too physically and mentally exhausted to continue in the bull-at-a-gate manner I thrive on, but my confidence, my self-advocacy—swallowed by the inability to follow even my own internal conversations, let alone ones with carpenters/plumbers/manufacturers on the phone—have deserted me. Leaving me alone, plugged into a light socket, buzzing with paralysing fear, emanating through me as I lay in my bed. Unlike the previous times I’ve lost my cognitive abilities (cognitive symptoms started in 2012) I’ve learnt to accept the capabilities of my own brain and memory, especially over the last few weeks; instead of fighting it, I press pause, take the phone off the hook, put a movie on.

It’s okay, this time. I’ve been here before. It, too, shall pass…

I’m lucky, I’m in this build with, and only because of my partner, Dan; and even though, because I’m the chemically sensitive one, I want, need! to be in control of all the materials (for testing and research purposes) and speaking to tradespeople, putting the particulars into writing (for legal reasons), yet, I’ve relinquished this miracle work over to him. He’s actually more assertive than me. If you can imagine that [just add hyper-masculinity and swear words]! I have to trust in his capability. (Of course, I’m still doing the testing; he’s just organising the products and samples for now.)

Here’s how to build a safe home:

Have Faith…

I admire people who believe in God. Any God. The closest thing I have to God is meditation and exercise; and my Dog, which we all know is God spelt backwards. Yoga has been my thing lately. Even my dog has got some type of pose going on:

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Enter Ganesha:

This is the brass statue we picked up while searching for this exact statue. We wanted an actual large stone statue for the garden but only found this: still, a statue for the garden. To be buried there, actually.

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In the book, 99 Thoughts on Ganesha—Stories, Symbols and Rituals of India’s beloved elephant-headed deity, the author, Devdutt Pattanaik, describes Ganesha as an organic god, one who has transformed throughout time, space history and geography. Pattanaik reminds us:

“Of all the gods in the Hindu pantheon, he alone allows his form to be re-shaped and re-imagined and recreated as devotees will it. Thus, he reminds us constantly that:

Within infinite myths lies the eternal truth Who sees it all?
Varuna has but a thousand eyes Indra, a hundred, You and I, only two

Pattanaik explains how Ganesha takes the form of the self-created Supreme Being, also known as God, declaring that “whenever social order (dharma) is threatened, he descends to set things right. He offers his devotees three paths to reach him: the path of intellectual introspection (gyan yoga), the path of passionate devotion (bhakti yoga), and the path of detached action (karma yoga).”

During the 7th century CE, after some dudes who just happened to be Tibetan kings married some Buddhist princesses from China and Nepal, Buddhism spread to Tibet. This form is known as Mahayana Buddhism, in which, Ganesha is also known as Vinayaka.

Ganesha of Tibet has two forms: when in the benevolent form, he is the remover of obstacles; in the malevolent form, he is the instigator of obstacles.

Two weeks ago, during a weekend when I was ill, we drove the five minutes it takes to get to our block and held a ceremony: we buried a brass statue of Ganesha, asking for his help to remove any obstacles that may be placed in our way.

I feel better now…

Do you have any beliefs, rituals or deities that get you through the tough times? If so, please share…

Oh, and if you know of a low VOC, waterproofer for balconies (that are to be tiled) and for placing under tiles in the bathroom, please let us know. It has to be inert once dry (it’s the chemicals that outgass, not the actual smell, that’s the problem.) and it must be non-toxic to someone sensitive to chemicals, please.

Michellina Van Loder is a Professional Writer, Journalist and Blogger. This is where she shares her tales about trail blazing her way out of the Labyrinth of Chemical Sensitivities and Mould. This is also where you will find the latest Research on related topics.

Myths and Facts About Chemical Sensitivity

Myth: People who have negative reactions to fragrances simply have allergies. Why is it necessary to structure my life around someone’s allergies?

Fact: Multiple Chemical Sensitivity, or MCS, is a progressive neurological disease that can result in death. Asthma, which often causes sensitivity to fragrance-containing products, can also result in death. Whereas people with allergies might be inconvenienced or temporarily ill from exposure to an allergen (although some allergens are life-threatening to some people), many people with MCS suffer extreme harm from chemical and fragrance exposures, sometimes resulting in progressive and permanent brain and organ damage. Although filter masks, portable oxygen, and other measures might help those with MCS, they do not prevent most exposures.

Myth: People with MCS don’t like the smell of fragrances. Why can’t I smell nice if I want to, or just use scents in my own air space?

Fact: MCS is not a smell preference but a recognized disability. Fragrances aren’t merely “nice smells” and they don’t stay confined to an air space. For example: dryer sheets, which were found in an EPA study to contain chloroform, can contaminate whole neighborhoods. Fragrances contain carcinogens and neurotoxins that cause severe health problems in susceptible individuals, and these chemicals linger on skin and clothes for weeks after use. According to the Environmental Health Coalition of Western Massachusetts, 95% of the chemicals used in fragrances are neurotoxic, including “benzene derivatives, aldehydes and many other known toxins and sensitizers capable of causing cancer, birth defects, central nervous system disorders and allergic reactions.” The EPA has found that asthma, fatigue, immune system damage, kidney and liver damage, cancer, and brain damage are associated with the chemicals in fragrances.

Myth: I use shampoo from the health food store, or products labeled “natural,” and I don’t wear cologne, so I am scent free.

Fact: “Natural” is a pretty loose term these days (see “The Ever-Unstable World of Labels“). The synthetic fragrances that contain the toxins mentioned above are found in most body care products, including many at the health food store labeled “natural.” Even some items labeled “unscented” contain a masking fragrance, which is a synthetic fragrance to cover up the smells of the product. Essential oils are also a problem for chemically sensitive people, and they can be impure — meaning they might contain solvent residue from extraction, or pesticide residue. Many essential oils also contain seizure-inducing compounds, a problem for people with MCS whose brains have lowered seizure thresholds. Using natural products does not make you scent free unless you buy natural products labeled “fragrance free” or “unscented” (without masking fragrance or toxic additives).

Myth: But I really LIKE my scents. Can’t we just negotiate a situation where I get to wear some scents so everyone wins? Why do I have to make all the sacrifices?

Fact: People fall into the “negotiation” trap a lot with the disabled, particularly those with non-apparent disabilities. Imagine how ridiculous this argument would sound if you used it on someone in a wheelchair: “Hey Bob, can’t we just negotiate and build the ramp halfway up the stairs?” There’s no halfway about disability. Invisible disabilities may seem vague, negotiable, or flexible to you, but they are not to the people who are disabled. People with invisible disabilities have experienced devastating, life-altering changes. They can’t be flexible about their disability any more than a person with a spinal cord injury can get up and walk on command. There’s no negotiating when it comes to chemical injury: if you expose someone with MCS to scents, they will experience physical damage that can potentially be irreversible or progressive. As Carolyn Gage writes, “Forget your assertiveness training, your skills at compromise, or your ‘getting to yes’ negotiating expertise. If I need to leave an environment because it is toxic to me and you want to stay, it is not a solution for us to stay fifteen more minutes. Those fifteen minutes may result in my spending the next two days in bed.”

Myth: There are other places with people with MCS to congregate, so why do they have to be in this venue?

Fact: The sickest MCS patients are barred from public parks (where pesticides and exhaust are present), stores, churches, medical facilities, schools, street fairs, homeless shelters, public transportation, courthouses, libraries, airplanes, public meetings, and almost everywhere else you can imagine. They are often driven out of their own homes. Many end up living outdoors or in their cars. A survey in Western Massachusetts found that 57% of the people in that area with MCS had been homeless at some point in their illness. People with MCS are often gradually pushed to the margins of society until they live nomadic lives, traveling to remote areas where they won’t be injured by the chemicals most people use. “One woman in my most current study sent me a drawing of her ‘home,'” wrote Pamela Gibson, PhD, “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.”

Myth: If I don’t wear scented products on the day of a fragrance free event, or on the day I visit my chemically sensitive friend, I’m set.

Fact: Residual fragrances from hair gel, shampoo, soap, detergent, lotion, makeup, hairspray, cologne, and other scented products will stay on skin and hair for weeks or months. Synthetic fragrances are designed to be “sticky,” which is why commercials brag about how long clothes will smell “fresh.” As a proactive step to protect yourself and the environment, it’s best to give up toxic fragrance-containing products completely. Since the fragrance industry is protected by secrecy laws and not required to prove the safety of their ingredients, you will be helping yourself as well as others.

Myth: I won’t get MCS. I love the smell of fragrances and they make me feel great.

Fact: Most people with chemical sensitivities were injured by a chemical assault of some kind (i.e., pesticide treatments in a home) and then developed chemical sensitivities. A person who has not yet been afflicted is certainly not immune. In fact, most people with MCS had many exposures before getting sick, and appeared to be immune until their bodies broke. Commercials have managed to normalize the practice of slathering damaging chemicals on the skin and hair where they might be readily absorbed — some who use these products may form the next generation of people with MCS.

Myth: If a chemically sensitive person got sick from my products, that person would tell me.

Fact: People with MCS are so disenfranchised, and so used to be ridiculed or ignored, that they may not ask for what they need. Furthermore, they won’t be able to get close enough to you to ask, since your scents could be making them sick. People with MCS also experience cognitive and neurological impairment when they are exposed to toxic products, which means they may not be able to think clearly enough to form the words to even express how sick you are making them — their speech may become slurred and their word-finding abilities and memory may be obstructed. Just because a person with MCS isn’t telling you that you are too scented, it doesn’t mean that you aren’t making that person sick.

Myth: It is too hard to make an event fragrance free.

Fact: In some places, particularly in Canada where there are many scent-free schools, hospitals, and public venues, fragrance free policies have been coupled with educational efforts to make a more healthy environment for everyone. Most people with MCS live in devastating conditions because the “too hard” argument is used. Every turn toward social justice is initially hard, but it gets easier as people create movements and promote peer education. It does take extra work to plan a scent-free event, but remember, people with MCS and other disabilities don’t have a choice in these matters. Others do have a choice. If they don’t want to give up scented products for the sake of a scent-free event, they might miss one event, but that event will likely be the only accessible event for a long time for most people with MCS. If you plan a scent-free event, you will also be setting a precedent for the next event.

Myth: Asking people to buy a bunch of new products to be scent-free is classist. People can’t afford to go out and buy new products.

Fact: Being scent-free can be achieved through the use of common household items such as baking soda, gelatin, olive oil, and unscented glycerin soap. Also, you’ll most likely be fighting against classism if you stand up against ableism. The working poor in our country are often the most likely individuals to be exposed to the type of occupational hazards that tend to cause MCS, such as pesticides, solvents, and industrial chemicals. Chronic Fatigue Immune Dysfunction Syndrome, which can cause MCS, also disproportionately afflicts people who are working class. Veterans of the first Gulf War, who were exposed to large quantities of damaging toxins, represent perhaps the largest cluster group to be afflicted by MCS. In addition, disability tends to put people into a state of forced poverty. Social Security benefits are sub-poverty wages, and disabled individuals who receive them are often poor.

Myth: Why should everyone have to make a change to help a small minority?

Fact: That statement is a tired historical argument used to fight any attempt to end discrimination against any minority. According to the Environmental Health Coalition of Western Massachusetts, one in five people experience health problems when exposed to fragrances, and 72% of asthmatics have adverse reactions to perfume. This means that an event or venue that doesn’t have a scent-free policy could be excluding or harming many of those who might attend. In addition, the Fragranced Product Information Network reports that 17 million people have asthma, 35 million have chronic sinus problems, 9 million have rhinitis, 25 million have migraines, and 1-2 percent of the population have skin allergies — all can be negatively affected by fragrance. People with chemical sensitivities are shoved to the margins of society where they live in various states of chemical exile. To get a sense of how some MCS folks live, check out the story of young Jonathan, one man with CFIDS/ME and MCS, and numerous MCS homeless living in the Southwest. These stories may change your viewpoint on accommodating fragrance-sensitive individuals.

Myth: But this is a Women’s/African American/Queer [LGBT] event. Can’t we plan a disability event another time?

Fact: Amazingly, there are individuals who are disabled AND also women, African American, queer [LGBT] , Latino, rich, poor, literary, environmentalist, Democrat, Republican, Green, Christian, Jewish, Midwestern, Australian, Muslim, Native American, country-music-loving, antique-car-driving, quilt-making, even flower-growing. In fact, almost 3 out of every 10 of today’s 20-year olds will become disabled before the age of 67. Please remember that categorical exclusion of disabled people is no different from the categorical exclusion of a group based on race, class, gender identity, etc. Your country club may not “feel like” admitting black members this week any more than those in your organization “feel like” accommodating disabled members. Those feelings don’t erase the underlying bigotry in the notion that excluding others is somehow okay.

Myth: Why should I have to be part of a radical political movement I’m not comfortable with, due to a few militant activists? What if I just give up scents for a day as a show of political solidarity?

Fact: People with chemical sensitivity don’t want to make a political statement: they want to survive a world of constant chemical assault. They want basic rights and accommodation, not political solidarity. It’s great to put pressure on corporations by boycotting toxic products, but wouldn’t you rather accommodate those who desperately need it? Also, almost every bit of activism around chemical sensitivity has been done by chemically injured people who are trying to save their own lives. Few of them have the energy to be militant. They are too ill to testify before congress, march in a congested city, stand in front of a crowd, or do any other action to fight for their own rights. If you want to show political solidarity, throw out your scented products and speak up when you see barriers to access. Certainly, chemically sensitive people will thank you if you go the extra mile and become an activist.

Myth: People with MCS seem angry about every accidental slip-up I make around scents, and everything seems to make them sick. Aren’t they overreacting? It’s just laundry detergent.

Fact: When you “accidentally” forget to not wear scents or when you use chemical cleaners around a person with MCS, you have just “accidentally” inflicted physical harm. You also unwittingly give the message that a “fresh clean scent” is so important that you don’t care if a friend spends months in bed because of it. Nobody should have to choose between isolation and physical injury. Don’t make people with MCS fight for their safety. They are used to coping with denial, anger, combativeness, and outright aggression when they ask for accommodation, and they need you as an ally. And yes, people with MCS are reacting to almost everything — physically — because, sadly, our society is so laden with chemical products that it is nearly impossible to avoid them. It’s painful for people with MCS when others choose synthetic products over the value of their lives. Instead of pathologizing the reaction of someone with MCS, why not ask yourself why you would choose the contents of a plastic bottle over a person you love? Why not ask how you would feel if you had to give up your job, your relationships, your house, your physical functionality, and your security in the world instead of just your hair gel? Why not ask what you can do to create a better society for victims of chemical injury?

Some information in this article is from the brochure, “The Hidden Dangers of Fragrances” from the Environmental Health Coalition of Western Massachusetts. A free sample brochure can be obtained by sending a SASE to: P.O. Box 187, Northampton, MA 01061-0187

By Peggy Munson. This article may be reprinted and distributed freely. Please reblog…

Michellina Van Loder is a Professional Writer, Journalist and Blogger. This is where she shares her tales about trail blazing her way out of the Labyrinth of Chemical Sensitivities and Mould. This is also where you will find the latest Research on related topics.

Information, products and views presented by guest bloggers @The Labyrinth are not necessarily the same as those held by this blog's author, Michellina van Loder. Reviews are my own personal opinions (unless stated otherwise); and satire is used throughout personal posts. Any health topics discussed are not to be taken as medical advice. Seek out medical attention if needed and do your own research; however, you're welcome to use mine as a start.
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