Category Archives: Mental Health

MCS/ES: Societal Neglect = No More Fun and Games for Life on the Planet

 

Please take a moment to feel your heart beating.
Not everyone can do this anymore.

While some progress has been made, it’s still too little,
too late for far too many people.

This will not change until more people who have MCS/ES come forward with their stories, and more  healthy people start advocating and helping us in daily life, as well as pushing governments and medical institutions to pull their heads out of the sand (and industry pockets) and get into (at least) the 20th century as far as the very serious environmental and related health issues are concerned.

 

“Business as usual is a disaster”
Robert Watson

 

“Unfortunately, many physicians, employers, family, and friends
are in effect assisting in suicide through their disbelief.”
(and neglect)

“The Consequences of Disbelief”

“Twelve years as an advocate for the chemically sensitive has led me to the sad realization that a large number of chemically sensitive people have taken their own lives and many others are inching ever closer to that decision because they find it such a daunting task to locate a safe place to live or work and are rapidly running out of money. And at the same time that they are engaged in this herculean struggle, far too many of them are facing a discouraging skepticism from those about them.”

 

From
“Amputated Lives: Coping with Chemical Sensitivity”
2008
By Alison Johnson
With a Foreword by L. Christine Oliver, M.D., Harvard Medical School

 

Links to several chapters of the book, where stories about people’s lives are featured are available here:

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What’s it Like to Have MCS/ES? Part 2: Curbs

MCS/ES (multiple chemical sensitivities / environmental sensitivities)  is a disability recognized by the Canadian and Ontario Human Rights Codes. There are over a million people with doctor diagnosed MCS in Canada, and so many more all around the world.

In the US, the latest prevalence study found that “among the population, 12.8% report medically diagnosed MCS and 25.9% report chemical sensitivity.”

The term ‘sensitivities’ seems to trivialize the condition in many people’s minds.

You may wonder what’s it really like then, if it’s not trivial?

 

 

From Amy RW Marsh:

I just wrote this analogy for a person who needed one in order to understand EI/MCS:

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What’s it Like to Have MCS/ES? Part 1: Arms, Brains, and Legs

MCS/ES (multiple chemical sensitivities / environmental sensitivities)  is a disability recognized by the Canadian and Ontario Human Rights Codes. There are over a million people with doctor diagnosed MCS in Canada, and so many more all around the world.

The term ‘sensitivities’ seems to trivialize the condition in many people’s minds.

You may wonder what’s it really like then, if it’s not trivial?

‘have legs or brain some days but not others’

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CBC News Hi-lights Accessibility Barriers to Housing for People With MCS/ES

Severe sensitivity to household chemicals leaves GTA man
homeless for the holidays

Environmental sensitivities have forced Oliver Zhang to move 70 times in 3 years


I hope that someone can offer or help create a safe place for Oliver Zhang to live.

I also hope that something is done soon to ensure safe, affordable, accessible,  non-toxic, mold-free, housing is available for all  the other people who have  MCS/ES (a condition, not disorder) who need safe and accessible housing.

Since finding a safe place to rest one’s head and body is so challenging, even in the best of current circumstances, Oliver Zhang should not be forced to leave the shelter where he is currently residing if it is physically safe enough for him to be there.  He is in crisis.

Forcing people onto the streets creates preventable trauma and mental health problems in addition to the serious challenges that already exist when trying to survive with MCS/ES in a society full of systemic accessibility barriers.

I know of many people who have had to move numerous (even countless) times  in their quest to find housing that doesn’t hurt and disable them. I hear from too many who are in crisis,  seeking accessible housing. I know people who no longer have the energy to keep looking for a needle in a haystack, because each toxic haystack leaves them more and more incapacitated. I know people with MCS/ES who are sleeping in cars and tents, and I have also known more than a few people who weren’t able to find safe housing and are no longer with us.

This is a preventable crisis.

Oliver Zhang and all the other people who are homeless due to the lack of accessible housing for people with MCS/ES, have been put into this position due to systemic neglect (if not deliberate discrimination) and bad policies, not through any fault of their own.

The City of Toronto has known about the critical need for accessible housing for people with MCS/ES since at least 2007, and most likely long before.

In 2008:

“The City of Toronto has launched a consultation process on the development of the City’s ten-year affordable housing plan, known as Housing Opportunities Toronto (“HOT”); and

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MCS/ES and Mental Health

Living with MCS/ES creates challenges that seem unimaginable to most people. Despite some progress (more awareness), due in large part to so many more people being affected, the barriers and obstacles to living in the world as it currently is, can be never-ending when there is industry generated denial that everyday chemicals (or wireless) exposures are hurting and disabling people.

dinner time“Remember, don’t talk or breathe when you take your masks off to eat”

It is exhausting to have to constantly ask for accommodations just to be able to exist in a world where safe solutions are often hard to find, or when they do exist, they are not affordable. It can be like living in a world that wishes we’d just go away and leave them all alone, yet… there is no safe place to go away to…

Is it any wonder then, that people develop mental health problems?

When health problems (mental or otherwise) related to circumstances and experiences arise, one is (usually) only truly helped by people who have an understanding of the issues related to the circumstances that are connected to the problems. When that understanding doesn’t exist, appearances can create erroneous assumptions that perpetuate the kinds of harms that caused the problems in the first place.

For people with MCS/ES, exposures can  trigger temporary or long term brain and behavior issues that look like mental health problems to people who don’t know how toxic chemicals, molds, food sensitivities, or wireless exposures can affect our brains and bodies. And sometimes we are capable of doing some things, yet completely incapable of doing others, as exposures can affect different parts of our bodies and brains, and for varying amounts of time.

What people also don’t understand, is that when we are able to live free of those exposures, we can be free of the brain or behavior problems the exposures cause.

Finding ways to access goods and services without being subjected to disabling levels of exposures can take 10 to 100 times more effort than people normally have to extend for the same goods and services. Sometimes, despite our best efforts, we cannot safely access the goods and services everyone else takes for granted. These challenges can mean we may need to turn to others for help with survival and coping , yet not only is it difficult to receive practical support,

new research  also proves that access to knowledgeable mental health care providers is rare for people with MCS/ES!

 

“When asked to evaluate their provider’s knowledge of MCS on a scale of “not knowledgeable”, “somewhat knowledgeable”, or “highly knowledgeable”,

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Down is Harder After Up

Alternate title: Be Grateful or Be Miserable!

I had some really good brain and body days in the early spring, enough that they left an imprint on me of how it felt to feel (relatively, and almost) normal. instead of the usual:

feels like quicksand-3

Then shit happened… (sorry, I don’t usually use language like that, but I’ve lost access to some parts of my vocabulary lately as a result of the toxic stuff I was exposed to).

Pesticides, dental infections and extractions, toxic products and materials (including trying to replace a SS kitchen kettle -simple, yes? Actually, NO), summer road work, more and more pesticides, heat,  VOCs, lack of ventilation and air filtration, which meant no ability to cook, and more…all of which resulted in some serious brain fog, cognitive problems,  and drastically reduced physical abilities.

Back to the drawing board…

After having some good days this year, I crashed again, and I haven’t been able to recover… much… There can be a few better mini-moments here and there if the outdoor air quality is exceptional and the breezes have been blowing the “right” way, but nothing like how well I was doing for a while in the spring.

Which makes it so much harder now, because I can actually remember what it was like to be more functional. It was so long ago before, that it didn’t really come into play or into my thoughts, as for so many years, I couldn’t remember what it was like to think clearly, or to function without effort, with relative ease.

Is it really too much to ask to be able to function with relative ease? To not have every thought, every action be like climbing a mountain or navigating an obstacle course?

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Optional “Inconvenience”

Guest post and images by Laura J Mac

What always strikes me during conversations about how to persuade service providers to accommodate our disability is how much extra work we have to do just to participate in simple survival stuff. I mean, “simply” tracking down professionals who are willing to accommodate is a chore and a half. The luxury of “having a good relationship” with a service provider falls way down on the list because it’s usually one or the other.

Laura J Mac 1

Nobody would think twice about someone who uses a mobility device asking if there are ramps and elevators but it seems that our need for fragrance-free and reduced chemical exposure is perceived as a “preference” rather than a medical necessity. That perception leads to the idea that accommodation of our disability is an “option” (and generally it’s an “option” that service providers aren’t willing to make available.) It’s not that we don’t “like” fragrance, these chemical exposures cause neurological and physiological problems that interfere with our ability to function on a daily basis.

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