Monday, February 3, 2014

The Accidental Activist Gets In Your Face

You may have noticed the fashion statement in my meme; I've just learned that this is called a Melfie (selfie wearing mask):

Linda Sepp recently blogged about wearing a mask and underscored several other great blogs on the wearing of masks in public so I decided to chime in.....wearing my activist mask, er hat.

First, I empathize deeply with Colleen and anyone with environmental sensitivities who avoids wearing a mask in public from fear of "SCENTUAL ASSAULT". Intentionally spraying perfume at a person with chemical sensitivities is a form of hate crime or at the very least, harassment.  Believe it or not, it happens A LOT, especially in the workplace. This will be evident from a cursory review of the case history of EEOC complaints re: discrimination against the environmentally sensitive.

Reading Michelina's experience of public discrimination and harassment while wearing a mask raises empathy and then a bit of gratitude that I live in Albany, California (next door to Berkeley). Berkeley is the birthplace and heartland of the Movement for Independent Living in the U.S.  The National Center for Independent Living is working on addressing access for those with chemical sensitivities.
Check out their section on environmental health barriers.

In the 2010 paper:
Of the World But Not In It: Barriers to Community Access and Education for Persons with Environmental Sensitivities by Pamela Reed Gibson: the researcher found that people living with environmental sensitivities in Berkeley experience a bit more acceptance, access and inclusion than elsewhere.
(I cannot find a link to the entire text of this paper but I'll email it to you if you send me your address).

The following quote from that same paper explains why I rejoice that I am well enough to go in public and to wear my mask there (at least for short periods).

 " Persons with disabling sensitivities are denied access to community resources regularly and made ill when forced to access them out of necessity. Because this population is excluded from sight, business goes on as usual, and public venues remain the purview of those whose bodies conform to the modern day mandate of imperviousness to toxics."

Having gone past the initial self-consciousness wearing a mask (it's been about 4 years now), I've grown accustomed to and learned from the experience. When people stare, whisper or glance away so I won't see them looking, I get a tiny taste of the life experience of a person with a disfiguring disability .....helps build empathy and understanding.  Usually I don't make eye contact right away so they can have a chance to check it out. When I do make eye contact many folks can tell that I'm smiling without seeing my mouth, and they smile right back! Most of them, except for the woman in the elevator in Nevada who asked "DO YOU HAVE A DISEASE?".

Another gratitude, the I CAN BREATHE honeycomb mask with carbon filter works well for me. I have the lace ones in most colors: from my photos you can see that the multi-colored is my favorite, it just goes with all my outfits and decor.  I have the sport valve filters for yoga class or walking and I just ordered a bamboo activated-charcoal version.

I usually try to match my mask of the day to my other migraine head-gear (hat, head-wrap and/or glasses), but  a full-blown non-responsive migraine attack trumps fashion, as you can see from this portrayal of me on my way to access medical services.

If I'm minding my own business somewhere that is fragrance-free and someone comes along and sits near me emitting "toxic fumes" from their person or clothing I must leave of course, but first, I whip out and don my very clinical-looking white honeycomb mask.  I've found that it's a lot more "in your face" than the pretty ones (because it evokes fear of contagion). Sometimes I explain to the "fumer" the reason that I'm leaving; (sometimes I don't for obvious safety reasons). Once a french tourist to Berkeley had her husband threaten me physically after I informed her she polluted a cafe with her perfume. I told them, "Welcome to Berkeley". That people become violent over their use of perfume tells me that the fragrance chemicals are addictive, the chemical industry designs them that way.

I'm currently in the market for a serious respirator mask to have/maintain in case of emergency; such as, a traffic jam on a bridge, being held hostage in a laundromat, or in the event of our rather frequent Richmond refinery "incidents". I'll have to re-read the mask resources on Linda's blog "Need Protection" to find the right one.

Many folks come right out and tell me they covet my mask (little girls prefer the bright purple), so I refer them to I Can! Others stare at me and seem afraid that I have something contagious. Some of these (mostly children) ask "why are you wearing that?" Then I get to explain about dangers of perfumes and after-shave.

I'm about to begin carrying and passing out the "refrigerator cards" created by Fragrance Stinks. Maybe someone creative out there can figure out how to add the words: "Perfume is Pollution" to the mask itself, (kind of like a sandwich board) so people will get the message while they're staring at the mask.

A note of caution. As my teacher Gurdjieff would say (through the mouth of Mulla Nassr Eddin) "Every stick has two ends". Wearing a mask is a public reminder that we SHARE THE AIR; however, we don't want employers and others to assume that permission to wear a mask to work or school is an effective accommodation.  A mask is not a panacea and should not be used as an excuse to maintain the status quo. More later on the effectiveness of the mask for work. Some of my struggles for work accommodation are described in a past blog.

Another quote from Pamela Gibson Reed:
"The hidden nature of MCS serves the status quo well in that persons with sensitivities disappear from the public scape, are not seen and normalized in others’ eyes, and business is allowed to proceed as usual."
Hey - y'all lookin' at me ???

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