Why is this so hard to understand? Toxic chemicals damage the body, sometimes to the point of dysfunction, and people who live with this as a chronic condition are often significantly impaired in how they are able to perform their activities of daily living. Furthermore, they lack access to “safe (i.e. nontoxic) paths of travel” into and out of stores, clinics, schools, hospitals, churches, recreational facilities, yoga studios, cafes and restaurants, public restrooms, government offices – you name it!
Participating in community, attending a civic meeting, or simply hanging out in hopes of conversing with someone who is NOT a solvent-based life form is often next to impossible! Even playgrounds can be hazardous. When my kids were little, I had to haul them off the climbing structures and away from the fragrance wafting moms more times than I can count. Mass transit can be a disaster. Mass anything with people in it can cause me to lose (1) airway function, (2) energy, (3) my ability to use words or think clearly, (4) coordination, (5) one or more days of being able to do much of anything. I cannot consider simple actions like attending a business networking meeting, taking classes at the local city college, getting my hair cut, going to the doctor, shopping for groceries, giving a bunch of teenagers a ride in my car, going to a job interview, or participating in civil disobediance without first considering how much it will cost me and how much am I willing to pay.
Why? Because common consumer, personal care, and industrial toxins are ubiquitous in our modern environment and they form a significant, real, physical barrier to people like me – who may crumble at any contact with their molecules. And because the average consumer has been gulled and lured into participating in their own internal poisoning – and that of others! – by using and wearing products which are NOT proven to be safe. And doing this in public spaces. The commons of our air (not to mention food, soil, water, etc.) is profoundly polluted.
We hear a lot of talk about food justice. It’s important. But I also want AIR JUSTICE. I’d like to go somewhere – anywhere – and not be at risk.
As for sex – finding and keeping sexual partners who are willing to give up their cherished signature fragrances or hair products is easier said than done. A polite request for accommodation is often perceived as an offer to violate constitutional rights! No ma’am – these folks will give up their Obsession and Eternity bottles only when you can pry them from their cold, dead hands! Three cheers then for the Chemical Manufacturers Association and the flavors and fragrances industries for the ultimate in recycling: adding hazardous chemical wastes to perfumes, cosmetics, and food additives and getting away with it! When it comes to pricey, relentless lobbying, the NRA ain’t got nuthin’ on them!
Oh, but I was talking about sex. What got me to this rant – erm, blog! – today was that once again I encountered a respected colleague addressing the topic of disability and sex who had no interest whatsoever in including people with environmental illness/multiple chemical sensitivity (EI/MCS) in her disability views.
Sigh.
Dismissed. Invisible. Denied. And dissed. The EI/MCS crew has been fighting this battle for years, on every front you can imagine. Even the disability community was against us for quite a long time as we often appear to be perfectly fine – unless we’re wearing a mask, respirator, or oxygen tank. Acceptance of EI/MCS as a disability (also called TILT – toxin induced lack of tolerance, thanks to Dr. Claudia Miller – or chemical injury) has been slow, grudging, and is still woefully incomplete in just about every area you can name. Part of the problem is not just that we fall into the “invisible disability” category, but that we also need something quite different from many other people in the disability movement.
We don’t need integration into society – we actually need a profound systems change in which these toxic chemicals are no longer manufactured or at the very least are not allowed into public spaces (like cigarette smoke) before we can even consider inclusion! And because we are not likely to get this, at the very least, we need our own toxin-free housing, clinics, classrooms, jobs, grocery stores, dance clubs, hula classes, art museums, laundry facilities, etc. And we are not likely to get those either. (I have been more active in the past on these issues, as a former president and board member of the Environmental Health Network of Northern CA.)
And we are not even likely to get SSI – as the condition of TILT or EI/MCS or whatever you call it is still debated in public assistance circles. My chemically injured mom – because she can still actually work – only gets a 10% disability rating. Yeah, even after her occupational injury she can work fine! But only in a toxin free workspace! That’s my problem too. I can work brilliantly, as long as I am not exposed to junk in the air. “Junk” being fragrances, air fresheners, hair care products, synthetic carpet, paint, cleaning products, particle board furniture, pesticides… da kine! Non-toxic jobs – and job settings – are all but impossible to find. They don’t exist. Even in a bastion of non-toxicity, like a health food store, you’re always going to find some nitwit hooked on organic, biodynamic produce who is also wearing more volatile petrochemicals on her skin than you’d ever spread on a strawberry patch – and is mindlessly off-gassing all over the entire store.
Oh, but I was talking about sex… So, the disability activism mantra used to be, maybe still is, “self-advocacy.” Yeah. Easier said than done when you’re brainfogged from a sudden toxic onslaught and can’t even put a sentence together or contain your chemically-triggered rage response. So, just picture some enchanted evening. You see a stranger across the room. You catch his/her/zir eyes and you begin to move forward, hearts beating as one… Then, it hits you! It’s no longer love at first sight – it’s chemical warfare at 50 paces! You have no choice but to get away as fast as you can. You can’t even get close enough to say why you can no longer afford to be interested, assuming you’d even retain the power of coherant speech. No one, I don’t care how georgeous or charismatic they are, is worth the risk of a fatal asthma attack.
I recently took my own sweetheart, who is wonderfully non-toxic, to a tantric puja at a temple with a strong, fragrance-free policy. I even booked accommodations for the night, a room in a guest cottage with a shared bathroom. I felt safe, secure, healthy – ready for a wonderful evening with my love. Wouldn’t you know, but in the 45 minutes allowed for dressing up puja style, a man I’d never seen barged into the shared bathroom as I was sprinkling myself with body glitter, and began to apply strongly scented hair gel! I said something like “fragrance, help!,” staggered to the door, slammed it shut, and fell gasping into our room (okay, I am exaggerating slightly…but not much!). Later, this man did nothing but give me stink eye over breakfast. For heaven’s sake! He’s the one violating temple policy and I’m the one to get the dirty looks?
Sadly, I no longer feel safe at the temple. And I’m not yet up to talking to the tantra teacher (a person I adore). It’s just too painful. But I will, after I process my feelings more completely.
I remember another time, enroute to another tantra retreat, when a fellow “goddess” wanted to carpool with me. When I explained that she’d have to be willing to ride unscented, she decided her scented haircare products were just too much a part of her life to give up, even for a couple of hours with me and the promise of a free ride. I was so sad to find I was much less important than a bottle of shampoo.
I am not exaggerating. As a person with EI/MCS I see a sort of madness in this world. People are so addicted to their cosmetics, personal care products, and other inhalants that they chose them over the people in their lives. If this is not a chemcial dependency, what is? In fact, inhalants – common household products huffed by teenagers – can be deadly. Really – deadly!
People who have experienced the lasting effects of toxin-induced loss of tolerance can see this clearly. They experience the heartbreak of suddenly being disbelieved and dissed by spouses, lovers, family members, co-workers, bosses, teachers, medical and mental health professionals, social service agencies (ad infinitim), and becoming social pariahs, deviants, outsiders unworthy of love, friendship, or the ordinary necessities of human life.
Even the “ecosexuality” movement leaves us behind – preferring instead to talk about “green sex” on undyed cotton sheets, with tempered glass dildos and eco-friendly lubes. The sexual health and difficulties of people who desperately need to benefit from this kind of sensitivity are simply not considered to be of interest. Perhaps it is easier to talk about eco-products with other yoga buffs while sipping a non-GMO almond milk vegan protein shake, than it is to meet the glance of an uncool freak in a respirator. The environmental justice communites don’t quite get it either – they haven’t yet put consumer toxins, and their effects, into the mix.
Is it any wonder that suicide rates are high among the chemically injured? Though we do our best to maintain and create relationships and community, our energy is often low, our ability to commit and follow through may be spotty, and we are wounded to the core by being treated as pariahs, freaks, hypochondriacs, and worse. But if someone seems to understand our strange plight, they become golden in our eyes!
Finally, I want to mention a mass event I did attend this last weekend. Moana Nui, an event organized by and for Pacific peoples in collaboration with the International Forum on Globalization, Pua Mohala I Ka Po, and the Oceanic Coalition of Northern California. I sat at the back, or far away from others, as I usually do – in search of fragrant-free “air space” – but stayed the whole time. I was deeply exhausted by Sunday evening, but I did stay. It was a life transforming experience. And this is what I learned.
The people of Pacific nations and islands are my kin in the struggle against toxic exposure. I knew this already, of course, being the granddaughter of an atomic veteran who had witnessed the tragedy of the bombing of Bikini Atoll and died of a radiation-induced brain tumor. And I knew it, of course, being the partner of a man who fights against GMOs and depleted uranium and other toxic conditions in Hawai’i. But at Moana Nui I began to understand just how widespread toxic activities are in some of the most beautiful and fragile places on the planet – thanks to factors like colonization, globalization, American military base building and activities, and environmentally destructive resource extraction by multi-national corporations. As a result, every Pacific Islander is at risk for toxin-induced loss of tolerance – not to mention the dangers of radiation exposure – as the people of the Marshall Islands know so well and so tragically.
They already know – and will know still more – the corrosive effects that toxic chemicals have on their bodies, families, and lives. I hope that their societies are more merciful, more loving, and less inclined to cast out the sick than this one is. I know this madness has to stop.
I thought I was talking about sex… but I guess this blog is really all about love.
P.S. As a clinical sexologist, here are classes and information I’ve produced which may be of interest:
Creative Sexuality class – online: Clinical Ecosexology – An Introduction.
Sex Coach U class – online: Eco-Sexology.
Sex Without Solvents and Other Toxins – Professional and Personal Perspectives on Clinical Ecosexology – MagCloud publication. Contains Toxins Ate My Sex Life column, republished from Carnal Nation.)
Fundamentals of Ecosexology – Part One (Carnal Nation).
Fundamentals of Ecosexology – Part Two (Carnal Nation).
Amy Marsh, Sexologist & Hypnotist 