I am pretty much unemployable – not because I don’t have a wide range of really useful job skills and life experience (I do!) – but because most workplaces (and some co-workers) are likely to be physically unendurable.
So I opt for self (under)-employment as a sexologist, sex counselor, and hypnotist. I also teach workshops and classes, many online. Because I’ve recently relocated my home and business in a new state, if I had to rely only on what I earn as a sexologist here, I’d be homeless and starving. (Fortunately, at this time, I have some spousal support which barely meets my needs. I am lucky. Others with my condition are not.)
Unlike people with many other kinds of disabilties, I receive absolutely no government help or money, I have no public understanding or empathy, and very little – very, very little – in the way of acknowledgment, let alone accommodation. The condition known as “multiple chemical sensitivity,” “environmental illness,” “chemical injury,” or “toxicant induced loss of tolerance” is classified as a “hidden disability.” And the people who suffer in this way are also hidden from your view. We live so much on the fringes of ordinary society, you all don’t even know we exist most of the time.
And this is deeply ironic, because the disabilty accommodations we need – environments and human interactions which are free of pesticides, herbicides, perfumes and scented products, certain household cleaners, and other substances and products (wrongly presumed to be safe) – are oh so good for the rest of you who are not yet ill. It’s like how wheelchair curb cuts are also really beneficial for parents pushing strollers, but even more so, because we all have to breathe.
Even so, there is always the risk that employers, teachers, landlords, administrators, co-workers, fellow students and tenants, medical professionals, and sometimes even loved ones, will either (1) bristle with resentment over the suggestion that they not wear perfume or spray pesticides in your vicinity, (2) deny your right to accommodation, (3) give lip service to your request but then provide a completely inadequate accommodation and muddled communications that exacerbate resentment against you, and/or (4) experiment on you by trying out different products, getting close to you, and then asking if their handlotion, shampoo, paint, roach spray, or whatever, bothers you. So much for the kindness of strangers… There are a lot of micro-aggressions lobbed against people with symptoms of chemical injury, and also a lot of gaslighting. People who literally reek to high heaven will deny that they are “wearing anything” (their clothing is saturated with scent, even if they haven’t freshly doused themselves). I had a woman do that to me just the other day, when I tried to attend a free yoga class available to people in my neighborhood.
Some aggressions are not so “micro.” Science teacher Judy Sanderson endured 130 deliberate fragrance attacks from her students at Culver City High School before her retirement this year, even after winning a significant victory against this harrassment in 1998. Judy was also a leader in the school’s Gay/Straight Alliance – this may have also made her a target.
If people with cigarettes acted this way, lighting up in our faces and denying the smoke, nonsmokers would scream bloody murder and file lawsuits. Public health officials would opine. Doctors would make pronouncements. Donations to lung cancer sites would increase. The smokers would be socially shunned.
But we are the ones who are shunned when we request a bit of fresh air. We are fair game for social and chemical aggression. Still. Even with more and more news coming out about the hazards of so many products, including scented cosmetics. We used to have to cite obscure Anderson Lab studies published in Archives of Environmental Health and rely upon such excellent publications as Our Toxic Times from the Chemical Injury Information Network. Now, we still cite studies and read OTT, but we also have whole websites are devoted to the chemical hazards in consumer products. (Example: Not too Pretty.)
But I want to tell you a little about my working life. As a self-employed, “complementary” helping professional, I can ask people to enter my office space “fragrance free.” My disclosure form includes a section titled “My Need for Disability Accommodation as a Provider.” It reads:
“Please note: I have a disability that needs accommodation. In order to stay healthy, I must ask that all of our sessions be “fragrance free.” If you arrive for an appointment wearing scented products, I will have to cancel your appointment and reschedule. The fee for rescheduling under these circumstances is half the hourly rate.”
Most of my clients and students do pretty well at helping me with this, yet not everyone understands what “fragrance-free” actually means. And when someone enters my office off-gassing perfume, hand lotion, hair spray, fresh nail polish, or Old Spice deodorant – I suffer acutely, and continue to suffer for hours or even days after. Even though I may have shown this client or student the door, my ability to function has already been impaired. Breathing becomes more difficult (I have asthma). I become brain-fogged and have difficulty concentrating. Pesticide exposure causes me to temporarily lose some of my language ability. And debilitating fatigue is a constant threat. I never know, from one day to the next, what my energy level may be, or what toxic exposure I may run into that will disrupt my plans to actually get something done. Grocery stores may be hazardous to your health…
Aside from the day to day struggle to attract clients and students, my ability to advance my professional standing in my chosen professions, is severely hampered by this condition – or more to the point, by the lack of awareness of this condition and disability accommodation. Face to face business networking, conferences, CEU opportunities, chummy collegial dinners, and so on, may all be hazardous to my health – because while smoking is banned from many public and educational settings, fragrances are unthinkingly allowed and people blithely inflict their signature fragrance on those who have not consented to invasive penetration of their airways and bloodstream.
Ironic, that in a field where “consent” is such a hot topic, the act of invading other bodies with harmful chemicals is so deeply ignored. Toxic chemicals can and do affect our sex lives and reproductive health.
Occasionally I do venture out into the wider world. I like making presentations on various topics and sometimes I get on a conference program. In the past I’ve done this, knowing I will probably have to spend days recovering afterwards (especially if air travel is part of the picture). I’ve given presentations, workshops, and poster presentations at such places as the American Counseling Association Pre-Conference Learning Institutes (2009, 2011), AASECT (2014), Catalyst-Con West (2015), Gender Odyssey, Gender Spectrum (three times), and the Pacific Rim International Conference on Disabilties and Diversity (also twice).
I was hugely disappointed this year at the PacRim Conference – I was speaking specifically on environmental illness and the conference program and signage had absolutely nothing about attending sessions fragrance-free. And there were people there who had covered themselves in scent. Sigh. I gave my presentation and flew back home that afternoon. It’s probably the last time I attend a conference. They are just not worth the trouble.
While professional conferences may be an activity I can no longer afford, since I am paying the coin of diminished health, other hazardous places such as grocery stores, schools, medical offices, gas stations, and airplanes, remain vital to my life. My life is one of picking and choosing what I might be able to endure that day, and preparing to pay double or triple for anything I do that involves attempting to access essential goods and services, or otherwise attempting to lead a “normal” life. And that includes my working life as a sexologist, hypnotist, and educator.
Please see my booklet, Sex Without Solvents, for more info.
Amy Marsh, Sexologist & Hypnotist 