Open Letter to the Snowflakers, or How to Avoid Looking Crazy

Last week there was a website article called "Allergic to Life" posted for The Guardian about the MCS/EMF community in Snowflake, Arizona. As you may recall, I visited this community a few years ago and although I enjoyed the company of the people, the area was a little barren, too depressing  and filled with too many car-eating rats for me to want to uproot my pet bunny and subject him to the horrors of giant snakes and roaming packs of dogs. The bunny is gone. Lately I have been revisiting this idea. How nice it would be to live in a community of like-minded people. Too bad they live in hell.

The more I thought about the article, watched the video, and perused the comments, the angrier I became. Unfortunately due to the overwhelming response, the comment section closed only a week after publication. Half the comments were from individuals with first hand MCS/EMF experience either because they are sufferers themselves or have direct contact with family or friends who are chemically sensitive. The other half were who I like to call "The Unenlightened" - people who have no experience nor have any knowledge on the subject yet due to their ignorance and inability to empathize feel the need to berate and blame the victim. For lack of cognitive understanding because of their incredibly low functioning brains, they blame it all on mental illness. They just can't wrap their heads around the fact someone might be different. I think even if I had left a comment it would have been deleted for being inappropriate for all the hollering, name calling and swearing I would have done.

This post is my response to the article.

The article and short video present a very interesting glimpse into the lives of these societal exiles including health history, illness remediation, architectural design requirements and various lifestyle allowances and restrictions. I found the suicide rate to be the most enlightening if not disturbing. The video has some very nice photographic elements, although the interview techniques and editing are substandard.

My main critique is the author is mentally ill and off her medication. Now, you probably think I'm being sarcastic, but she says as much in the article. Why? This is an article about MCS/EMF lifestyles so why is she front and center? She has even included two photos of herself. I surmise they appear only for posterity. She loves her mentally-ill self and she needs a self-esteem boost. Her mental illness has influenced her outlook greatly and perhaps she has sought out this community to validate her own illness.  Clearly she arrived in Snowflake with an agenda. Who farts in front of their interviewees and celebrates it in their own article? Bodily functions have been perceived as subversive entertainment since the beginning of time. It's too tempting. Only the crazy lack social skills. But she's on a mission.

The article and video fail miserably at qualified research. There is little medical research history cited and even it points to mental illness. There is nothing on the government agencies that recognize MCS as a disease and disability. There are no interviews from medical professionals, whether supportive or not. The author was invited into the community on the condition she would not contact psychiatrists who would debunk MCS/EMF diagnoses. I know these verbal agreements were an attempt by the interviewees to focus the article as a vehicle for public education rather than spreading narrow-minded untruths about the condition. Unfortunately, what is left is an expose on mental illness.

The message is clear: MCS/EMF is a psychological condition rather than a physiological health problem.  The author complied with their requests as she didn't call in the so-called medical naysayers, but worse, she states in the article that the interviewees tried to make her promise to not to even write about it implying they are paranoid and unnaturally fearful. She highlights behaviors that are strange which calls into question the rationality of her hostesses. She talks at length about her mental illness and makes comparisons while allowing the kind and empathetic MCS/EMF community members to offer advice and assistance. After all, they know the signs. The author also writes with the flare of insanity: disorganized, off-point, babbling without cognitive control. The whole article, including the writing style, screams mental illness. This strikes me as a back-stabbing. A betrayal twisted just so to appear as if they complied with requests and respected their subjects. Kathleen Hale...you should be ashamed of yourself for taking advantage of these people.

So who's at fault here? A mentally ill journalist with an agenda? I think not. Reckless, thoughtless, self-serving journalists always have agendas. That's the point of their job. It doesn't make it right. It just is what it is. The Snowflake community members are experienced with journalists and filmmakers as they seem to get their fair share of them visiting. So why aren't they better prepared? Perhaps they need some constructive criticism...

Dear Snowflake Community Members:

I have met many of you and I didn't get an impression of mental illness. I also know chemical and radiation poisoning does affect cognitive function, energy levels, and overall well-being making us less likely able to defend ourselves. Forced exile and isolation beg for company. This puts you at a disadvantage when dealing with celebrity-seeking journalists with agendas. Still, your current method of presentation is less than helpful to the MCS community at large. Here are some tips for handling journalists:

First, journalists are not your friends. You shouldn't be inviting them into your house for personal experience. Some are honestly searching for truth and knowledge, but most have an agenda that inspires them to desperately seek subversion and/or entertainment. Twenty-four/seven access invites too much scrutiny. Keep them at a distance. They are usually not trustworthy. Besides, if you can't offer basic hospitality, don't offer them bare bed springs and no blankets. Don't add dirty mats as if that rectifies the situation and provides comfort. Forcing people to walk naked from your car to your house over gravel is anything but typical. (If they were so toxic, why were they allowed in the car?) Expecting them to wear your underwear and feeding them cabbage soup is not socially acceptable. This style of hospitality screams MENTAL INSTITUTION complete with a violation of human dignity. If the author has ever been committed, I'm sure she was feeling right at home. Regardless, such an adventure will make for a really, really good story.

You can't impose censorship on a journalist. It defies the notion of our American patriotic freedom of speech. This freedom is the blood which runs through a journalist's veins. By attempting to control what they write and how they think, you challenge them do exactly the opposite. The more sleazy and underhanded they can play, the more satisfaction they will feel. They are constantly looking for a publishing edge. That's how they make their living. If you can't be honest with information and accept whatever they may write, don't extend invitations. Trying to control them with conditions and promises only makes you look paranoid [mentally ill].

Interview the journalist before he/she/they arrive. Have them send sample writings or online links to their publications. Research their positions on health care, politics, etc. Do they know anything about MCS/EMF and what are their current opinions? Ask for references. Find out if they have stabbed anyone in the back before. Can they actually write well without babbling incoherently? Find out if they have health issues. Find out if they are mentally ill. Any indication or instinct that feels wrong, decline their request. Be on the alert for sociopathic liars.

Assume journalists will seek and find the opposition. That is their job. Instead of attempting to control what they will write which only tempts them with the forbidden, guide them in their endeavors. Offer it to them on a platter. Give them information you want them to have including facts on how and why incompetent medical professionals view MCS/EMF negatively including prepared rebuttals. Give them names of doctors to interview. Heck, set up the appointment for them and point them in the right direction. Make their jobs easier. If you wear them out with information, the lazy journalists might stop there. I find being open and honest about the opposition is more helpful than trying to subvert it.

Be prepared. Instead of trying to control the journalist, control yourselves. You are the expert on your condition. You've heard all the questions and know all the answers. Present your facts with precision and clarity. When the journalist asks, "What would you say to the people who say you are mentally ill?" have a response ready that is clear and concise rather than, "Get your head out of your ass." Now I totally understand this response and the video editing that made it a sound bite, but to the general public aggression can be perceived as a symptom of mental illness. Don't talk about wrapping shit in tin foil, or putting a gun to your head, or implied child abuse. Do not let your guard down or babble thoughtlessly.

Practice good thespian skills. In addition to being prepared, be aware of how you present yourself. Be an actor. Control and plan your responses. Maintain a professional stance in order to relay quality information and purposeful education. For instance, if someone asks you what you do in your free time, don't say "...including things I don't want to go into." What does that mean? Are you a masturbation addict? It is not advantageous to sound like a psycho, a pedophile or a unabomber. Instead, respond with, "Oh, I do all kinds of things. I read, write, listen to music, go for walks." Don't give them sound bites that prove to the public you are strangely subversive. Assume anything you say and do will be held against you, or presented for public consumption permanently online...forever. Prepare your lines and present them like a sane person starring in your own movie.

Avoid contradictions. Anytime one challenges the status quo and tries to educate the public by telling them their everyday habits are toxic and health threatening, the Unenlightened will search for contradictions to discredit your information in order to legitimize their own lifestyle. Don't give them ammunition that supports their notion it's all in your head. If you tell them you are sensitive to plastics, don't pull out the plastic containers for photographic opportunities. If you tell them car exhaust makes you deathly ill, don't discuss driving or living in cars. If the journalist persists in her use of the word "allergy" and even plans to use it in the article's title, don't feature your barking dog in photos. Being "ALLERGIC to life" would imply pets are a problem as well. It's bad enough you have a barking dog around people who have hearing sensitivities. Contradictions discredit your information. You become unbelievable adding to the myth we are all just confused [psychologically impaired] or lying in order to get disability. Granted, a journalist with discrediting agendas will be looking for the contradictions. Again, don't invite them into your home.

Create your own articles and videos for public education. If you truly want to control what is written and seen, then produce your own public relations materials. Yes, I realize this takes energy and capital, but it's the only true method of control. Even so, what you write will be met with criticism and scrutiny.

Again, inviting journalists into your homes is risky as well as exhausting to anyone who is chronically ill. If you don't have the energy to maintain a controlled, professional demeanor, I highly suggest to avoid extending invitations. Think of them as vampires - once invited, the terror begins. I hope this list of suggestions is helpful the next time someone wants to invade your space and share their experiences with the world. It's advantageous to not promote the notion it's all in our heads.

Thank you,
Multiple Chemical Survivor