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.
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.
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.
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?
After Gadget 