Day of Visibility: Homeless & Hidden MCSers

A conceptual image. Along the top, in white, caligraphy or script-style lettering, "Day of Visibility." In the bottom right corner, "June 6th." The image is of smoky or cloudy colors, red on the left, blue on the right, white in the center, yellow/orange where the red and blue meet in the top center, and purple/black where they meet in the bottom center. It's as if there's a bright light shining in the center, trying to break through many different shades of obfuscation.

Today, June 6, is Day of Visibility, when people all over the world are trying to raise awareness about hidden disabilities.

While my disabilities — MCS, CFS/ME, and Lyme disease — are often categorized as invisible disabilities, it has been a very long time since I’ve gone out in public without “looking disabled.”

I have experienced the suffering of having my disabilities denied (because I “look great!”) especially in the early years of multiple chemical sensitivity (MCS) and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). However, I wanted to devote this post to a particular form of truly devastating invisibility.

The idea for today’s post came from the responses I got to my recent posts on MCS. I was surprised, pleased, and confused by the comments I got.

Surprised because I somehow thought my readers already knew most of what I was saying. Pleased because the response was so generous and kind, and frequently included requests for more information. And confused because I really don’t know how to represent my MCS to the public anymore. It used to be quite severe, and now, it is still severe outside of the MCS world; but inside the MCS world, I’d consider it more moderate, or maybe on the mild end of severe?

It left me wanting to tell you how it is for the people who really are suffering bad reactions to exposures every day (which was true for me at times — for many years, actually), and who are homeless or confined to one room (which I also have been) — sometimes unable to use phone or internet due to electromagnet field sensitivities (EMFs).

The most important aspect of this story is how very, very common it is.

If you have severe MCS, it’s not a question of if you will be homeless, displaced, or living in unsafe, inaccessible, or unaffordable housing. It is only a question of when.

For example, several years ago, I wrote a press release about the results of a housing survey of MCSers in Western Massachusetts. I helped create the survey and disseminate it, and I compiled and interpreted the data. (Please note: None of the contact information on that document is correct — not my contact info, nor the info about EHCWM.)

Even as a part of this community, and knowing that housing is a crisis issue for all MCSers, I was still shocked by the results. I hadn’t realized so many of my friends and community members with MCS were homeless at the time of the survey (10-20 percent), or had previously been homeless (57 percent).

Can you think of any other group of people in the United States where homelessness is typical? Where it happens to the majority?

Everyone with MCS is — to varying degrees — at risk for homelessness all the time.

Even me. I have my own stories of displacement, frantic housing searches, and staying in traumatic or illness-inducing situations, but I’d rather tell others’ stories today, the stories of deeper invisibility than mine.

A couple of days ago, I put out a request for pictures of people with MCS who have been homeless or in conditions of extreme isolation. I wanted to put faces on the situation, to remove the invisibility, and have people provide their own pictures and words.

However, because of time constraints, I was only able to gather a couple of photos and stories, even though I personally know dozens of people who have been homeless or locked away. So I’m weaving together these strangers’ photos and stories — in their words — with a few stories of people I have known, in my words.

(Several people wanted to send me photos and stories, but some weren’t sure how much they wanted to share “of that horror,” as one person told me, and others probably haven’t been able because they are too sick or don’t have reliable internet access. If anyone still wants to participate, please get in touch; I will add your story.)

A story of one of my friends:

A friend with one of the worst cases of MCS I’ve ever known lived nearby in Western Massachusetts, in a ceramic trailer, with no electricity or running water, year-round, in the woods. She could smell fragrances and other chemicals miles away, literally. The only people she saw were her dog, and her helper, who came weekly and also had MCS, who helped her haul water to her trailer.

Someone who responded to my request for pictures:

This is Dr. Ralph Wilson, of Washington, DC.

A white man who looks to be in his early thirties, with straight brown hair parted on teh side, wearing a blue windbreaker. He is smiling and appears to be standing in front of or next to his car.

Dr. Ralph Wilson, 1983

Here is a little of what he told me:

The picture [above] is from a time when I had to move from three rental rooms within a short period of time. That was around 1983. I had to use the homeless people’s procedure to manage my voter registration. This picture is not spectacular to an outside observer I am sure, but to me that highlights what MCS people can look like on the outside. Many people with MCS will struggle to look okay but are pushing forward against crushing factors that other people seem oblivious to.

Ralph in 2011. His hair is shorter and mostly gray. He is much thinner and is wearing a sport coat with a kerchief around his neck. He is standing in front of a bookcase. His smile and eyes look much more alive than in the earlier picture.

Dr. Ralph Wilson, today

The picture above is from my website. I now have a lot of hope and look okay on the outside. However, I still am very much affected by fumes, and am financially very challenged and sometimes feel that I am only a few weeks away from homelessness.

In 1998, E Magazine published a photo essay by Rhonda Zwillinger of homeless people with MCS. It’s entitled, “No Safe Haven: People with Multiple Chemical Sensitivity Are Becoming the New Homeless.” The photos and stories are utterly compelling. I hope you will read the article and uncover these additional stories of invisibility.

A story of someone I know:

Peggy Munson, who also has MCS, CFIDS, and Lyme, and lives in my area, wrote a powerful blog post about the isolation of people with MCS, and how it is often combined with life-threatening hatred and an attempt to drive us out of our safe housing. She describes the type of isolation she lives in in this 2010 post: “I spen[t] most of 2009 lying ten hours a day on a bathroom floor as far as I could drag myself from bed, unable to speak and in respiratory failure dying a horrible death.”

Ever since I got MCS and “went public,” people have emailed or called me, asking for help. I have also had close friends in dire situations. I always feel incredibly helpless, because the need is so great, and there is so often nowhere to turn. Everyone else is in the same boat.

For example . . .

An elderly woman in the Midwest called me for help after reading something I wrote in an MCS newsletter. Her neighbor was on a campaign against her. Why? He didn’t like her, she didn’t know why, probably because her MCS made her “strange.”

He started by spraying his own lawn with pesticide, because he knew it would make her sick. He escalated to coming onto her property (at night or when she was out) and spraying pesticide on her lawn, then her porch, and finally into her dryer vent — thereby poisoning her entire home.

She had owned this home and lived there 30 years. Her belongings were all contaminated as well. The last time I heard from her, she was living in her car and praying that someone would buy her house so she could find a new place to live.

This is Michelle H., who responded to my request for pictures/stories. She was chemically injured at work.

A white woman with shoulder-length brown hair stands outside wearing a large white cotton mask that covers her nose and the bottom half of her face.

Michelle H., current photo

I was bedridden for over a year, unable to even feed or bathe myself much of the time. My [then-]fiance [now husband] took on three jobs to support me, and stopped by home between them to take care of me. [We] relocated to rural Arizona from Northern California with plans to build a solar-electric, straw-bale house. We lived in a tiny travel trailer without electricity or running water for almost four years but ended up giving up that dream before the house was completed.

The environment in rural Arizona has NOT been ideal for me: Instead of neighbors’ dryer vents, car exhaust, and other city situations like landscaping (pesticides and leaf-blowers), rural Arizona has substituted neighbors burning trash (including plastics), burning sickening cedar-smelling wood for heating, and “controlled” burning of the forests to reduce wildfires.

There are tons of diesel trucks and tractors, and with no smog controls, the car exhaust can be bad too. Especially, it is very difficult, expensive, and frequently impossible getting the fragrance-free products and organic foods I need.

Lastly, I can’t go outside in the intense Arizona sun. I get migraines from the brightness, I can’t breathe in the dry heat, I have rosacea and have been warned that I am developing skin cancer. (I haven’t found any sunscreen I can tolerate.)

My health has improved since 2008: This has been due mostly to having a fairly “safe” home now and staying inside it most of the time, with no visitors.

Here is the story of an activist I knew:

A woman in her 30s, living in the Pacific Northwest, was severely disabled by MCS. Everyone in her community knew it, but as is usually the case with MCS, most didn’t believe she was really sick; they thought she was “crazy.” So, one of her neighbors sprayed the vacant lot he owned, next to her house, with pesticide to prove she wasn’t sick — over the pleas of her husband and her best friend, another neighbor. She died of organ failure the next day.

What makes these stories horrific is that they are so very common. Talk to anyone with MCS, and they will tell you of something similar happening to them or to someone they are very close to.

Homelessness is normal in the MCS world.

Severe isolation is beyond normal — it’s assumed.

Attacks by coworkers, neighbors, schools, local governments, are always a fear we harbor, wherever we are. To be disliked by a neighbor could result in death.

My MCS is not nearly as severe as it used to be. And I am much more able to be connected to others via the internet than people whose EMF sensitivities are too severe. I also have reliable access to phones, electricity, water, and safe food, living in my safe home, which is not true of so many with MCS. I try to keep on my neighbors’ good sides.

Thank you for reading. And thanks very, very much to those who sent their stories or considered it.

-Sharon, the muse of Gadget, and Barnum, SDiT?

9 Responses to “Day of Visibility: Homeless & Hidden MCSers”

  1. 1 Karyn June 6, 2011 at 9:32 pm

    Though my MCS is still severe, I remember when it all began. I remember being bed ridden a lot. I remember trying to feed my service dog with vaccinosis and nearly passing out from toxicity issues.
    I remember the years living where I now do that neighbors in my apartment line up used highly toxic cleaners, smoked, and used their exhaust fans liberally. There were times that I wondered if I would be better off on a park bench than living here. Those tenants moved and now my home is much safer but the burning, gas mowing, use of wood for heating will forever impact my home. I worry about the knowledge I have that MCS kills.
    I know I am lucky! I have a roof over my head and a service dog who is my only friend IRL. I have a gas mask that allows me to get the food I need and am so much better off than just 3 yrs ago-
    I am lucky that my manager understands as best she can and forewarns me of things going on to help me protect myself.
    I wouldn’t really call my home completely safe, but I know it sure beats what many suffer through
    No one with MCS is really lucky I know that, but I have to feel fortunate when I read some of the stories of those who walk this path- much worse than myself

  2. 2 Brooke & Cessna June 7, 2011 at 1:37 pm

    Reading this entry left me in shock. I never realized how evil humanity can be. I didn’t know anything about MCS until reading your blog. If I knew someone around me had MCS, I’d try my best to keep things tolerable for them, I wouldn’t go out of my way to try and disprove their condition or hurt them – that’s just evil!

    Thank you for your continued eye-opening education.

  3. 3 brilliantmindbrokenbody June 8, 2011 at 11:05 am

    I can understand when people do things in complete ignorance, like wearing fragrances. What I cannot wrap my head around is people deliberately harming those with MCS. Why the hell would you spray someone else’s property with something harmful to them?! Ye gods. It’s like my ex-roommate who deliberately filled the house with smoke because I told her she was triggering my asthma and allergies with her smoking (I only moved in with her because she said she would quit smoking in the house with someone else moving in – I thought she meant completely, but she meant she’d only smoke in her bedroom). I ended up sleeping on a friend’s futon for a week because between her smoking and her emotional attacks, it was a completely unsafe environment for me.

    I just…I don’t understand people. I don’t understand deliberate cruelty. I don’t have it in me to treat people with anything resembling that kind of active hatred. Disregard is bad enough, but full-on hatred…it makes me wonder who raised these people!


  4. 4 Sharon Wachsler June 8, 2011 at 12:57 pm

    Well, again, because of the reaction to this post (which I find so heartening, I can’t tell you), I am definitely going to blog about this issue.

    In a nutshell, here’s what generally happens: Non-MCSers can’t believe that what they are doing is harming someone else, because it doesn’t bother THEM (and usually they actively like whatever it is, like smoking or fragrances, etc.).

    And because of our (especially American) attitude that “individual rights” trump all, people get really defensive and really angry: “You can’t tell me what to do! It’s my RIGHT to use xyz! This is AMERICA!” So, they use MORE, or they start spraying their coworker’s desk with perfume, or whatever.

    This is often because people perceive a REQUEST for MCS accommodation as a DEMAND. There are 2 reasons for this:

    1. Sometimes because, we, the MCSers, don’t phrase things in the most careful, gentle way we could (which is sometimes just not possible when you’re having a bad reaction and freaking out or can’t think because you’re massively brain fogged).

    I have done this myself, and just blurted out, “You’re making me sick!” Which is not accurate. The person isn’t making me sick, the fumes that are emanating from their hair, skin, or clothing are making me sick. Sometimes it’s hard to think well enough to phrase things right in the moment, but I’ve certainly gotten better at it over the years (LOTS of practice!).

    2. Sometimes it’s just that people can’t tell the difference between a request for compassion and equal treatment, and a demand that they are losing some of their “rights.”

    There’s also a shame/guilt/offense factor. People confuse us saying, “That product you’re wearing is making me sick,” with, “You smell bad.” Which usually triggers feelings of shame or anger (taking offense).

    This can become particularly tricky when the non-MCSer is in a marginalized group who have traditionally been told that they smell bad (women, people of color) or that their bodies are ugly/not right and not theirs to control (women, PoC, queers). Then you get a backlash reaction, because they feel their products are part of their self-expression (as a woman, or as a Latino, or as a butch dyke, etc.).

    I’m ending up writing blog-length comments! Here’s a page on Peggy Munson’s blog that answers a lot of these questions more completely than I’m able at the mo:

  5. 5 brilliantmindbrokenbody June 8, 2011 at 11:19 pm

    I understand the mechanics of the system that creates the response, but I can’t wrap my head around how people can be that cruel. But then, I’m often told that I’m kind-hearted when I think of myself as a relatively selfish being, so I suppose my perspective has some degree of skew going on.

    I’ve been told that my perfume was giving a coworker a headache, and I did what is to my mind the only reasonable response – I went and washed it off and never wore it when we were on the same shift ever again. That just makes sense to me – you don’t make people around you miserable just for the heck of it. I love perfume, but my squee! over scents isn’t worth making my coworker miserable all night. The balance is particularly shifted, to my mind, when the level of misery increases or the amount of time I can’t wear it decreases (so for example, the fact that I could put it on if I wanted when I got home and about half the week because our days off didn’t match made it way easier to not wear it around her; on the other hand, if what it did to her was worse than just a headache it would make it all the more important to not wear it around her). I hope that all made sense.

    To me, that’s just basic courtesy and good sense. The latter in the sense that if I have to interact with someone all the time, it’s only good sense not to burn bridges by doing something to make them feel crappy. And that’s without even getting into the sort of harms people with MCS deal with from exposures – then you get down to basic decency, which is a much lower denominator IMHO.

    Anyhow, what I was trying to say is that I can’t get the complete disregard for the humanity of another person. It just…it’s something that I cannot understand. You don’t treat your fellow beings like they only exist to inconvenience you. You don’t treat them like trash, existing only to be thrown away. You don’t DO that – to do that is to degrade your own humanity, to make yourself less human.


  6. 6 gomoosego May 26, 2013 at 11:45 pm

    I had no idea what MSC even was, before reading this article. I was thinking “some type of multiple… back pain… cripple… what? why I don’t I know that word?” when you explained it’s the acronym for “multiple scent allergies”. I, personally, do not have any allergic reactions to anything other than a mild dermatological reaction to rolling around in live grass, and I am fully aware that I’m immensely lucky. Whoa! Now that I’m informed, I feel terrible. I know several people with scent allergies, smoke allergies- and I always avoid burning incense on days they’ll be entering my home, air it out beforehand, shower before seeing them and don’t spray on cologne before we go out, but I had no idea of the huge isolation factor involved- smelling peole miles away? Holy crap! That sounds terrifying. Please, keep writing. You opened my eyes. I’m arguably a member of marginalized group myself, but I really want to know more about how you live your life and what I and other members of society can do to make the possibility of co-existing more feasible for yourself and others.

  7. 7 Sharon Wachsler May 27, 2013 at 1:13 am

    Hi gomoosego, thank you for commenting. You said you want to know what you and others can do to make co-existing more feasible for me and others with MCS. I’m so grateful and pleased that you and others have had this reaction to my work.
    If you would like to make the world safer and more accessible to people with MCS, a few things come to mind:
    1. Never use any pesticide (herbicide, insecticide, rodenticide, etc.) ever again, if you can help it. These are the chemicals that are the most terrifying because they can make a healthy person sick/disabled in a hearbeat, they can make an MCSer homeless or horribly ill or make them way more sensitized/sick than before, or they can kill us. And they also are doing unbelievably devastating things to birds, mammals, waterways and groundwater and things that live in water, etc.
    2. Switch all your personal care and cleaning products from fragranced and toxic chemicals to all nontoxic and fragrance-free products. Discontinue products whose purpose is fragrance. As with pesticides, these products cause damage to human health and to the environment, and you never know whom you are harming around you who is breathing these fumes.
    3. If someone tells you that they have chemical sensitivities, believe them and encourage other people in your/their lives to believe and accommodate them. Too often we are alone and scared. Allies mean a great deal.
    4. If you or anyone you know has housing for rent, don’t paint it before you rent it. Don’t put in new carpeting. Or, if you must do remodeling, painting, etc., use the least toxic materials you can. Advertise it with these MCS-safer features. So so many MCSers are homeless because they can’t find safe housing. One of my good friends is currently homeless, and another is at risk of becoming homeless soon. They both have Section 8 vouchers and have been searching for safe housing for many, many years. Finding a unit that is MCS-safe and will take a Section 8 voucher is almost impossible. Any landlord who is willing to rent without first doing the usual things (painting, cleaning with toxic chemicals, etc.) can easily find themselves a very loyal, quiet, clean, low-maintenance tenant in an MCSer who is desperate for a safe place to live.

  1. 1 The Rural Difference « After Gadget Trackback on August 2, 2011 at 12:02 am
  2. 2 The Terror of Being the Bad Cripple; Or, what happens when I don’t sit down, shut up & stay home, | Sharon Wachsler Trackback on May 18, 2013 at 10:03 am
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