Mimi from Ontario, Canada has this to say to us:
I wish that you could accept that this is real and that your habits make me ill.
I wish you could understand how switching to fragrance-free products is such a small act that means a world of difference to me – literally.
It means being able to have a clear mind in order to work effectively and support myself, it means being able to receive hugs, it means not suffering every day.
♥
Posted in Accessibility, Disability, Education, Fragrance, MCS/ES, Multiple Chemical Sensitivities, Support
Tagged fragrance-free, hugs, MCS, Products, think clearly, work
Guest Post by Leah Spitzer
I have Multiple Chemical Sensitivity (MCS) – a “multi-system illnesses as a result of contact with, or proximity to, a variety of airborne agents and other substances. (Environmental Protection Agency).” In other words, I react to fragrances, building products and more. It is not a histamine reaction, but rather, a systemic reaction to the chemicals in fragrance and other products.
As someone with MCS, I’m also known as a “canary” with deference to the Canaries in the Coal Mine. As a canary, I often encounter looks of disbelief when I mention I can smell someone’s laundry detergent, or fragrance. I can smell it on them, their dog, their cat, their clothes, or even the package they are bringing me. I smell it in their home and in their car.
Often times, if it’s just a passing moment, I try to step back, or just tough it out, but sometimes I have to speak out. When I do, the most common response, after the surprised look, are:
“I didn’t put any perfume on this morning”
or
“I don’t smell anything”
Why the disparity in perception? There are several reasons that I have observed:
For your information, here are scans of the MCS brochure from the Environmental Health Clinic at Women’s College Hospital in Toronto, Ontario. Note that they see mostly patients with milder to middling MCS/ES (and there’s usually a 6-12 month wait list), as those with more severe MCS/ES are unable to access the clinic, it being in a regular hospital with hand sanitizers, hundreds of toxic people and plenty of unsafe materials everywhere.
The brochure is an introduction, and reducing exposures is always a good thing, but sometimes people with MCS/ES need to eliminate exposures to remain at all functional, and that’s where things become a lot more complicated, and why we need the OCEEH.
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Recognition Inclusion and Equity is the name of the new website for the OCEEH. Their comprehensive reports and other information about this much needed project can all be found there now. Please check it out and also “like” their facebook page if you are on facebook.
Why? From their website:
MISSION
Our overarching goal is to achieve ‘recognition, inclusion and equity’ for people living with the often painful and disabling conditions of ES/MCS (environmental sensitivities/multiple chemical sensitivity), ME/CFS (myalgic encephalomyelitis/ chronic fatigue syndrome) and FM (fibromyalgia).
At present, more than 568,000 patients with these conditions lack the normal rights, benefits, policies, programs and facilities that Ontario makes available to those with conditions of comparable severity and prevalence. …
What if you had the chance to say one thing about your life with MCS/ES, and how it would change your life if it was understood?
May is MCS/ES Awareness Month (yet again… maybe some year we won’t need it to be, but this year, we still do), and this year, I would like to share some of your stories and insights.
If you could tell the world ONE thing about your life with MCS/ES (or any other invisible disability that has MCS/ES as a symptom), what would it be?
How has this one thing affected your life?
If this one thing were changed, how would your life be different?
You could think of it as a conversation with someone you love, someone who loves you (or even a kind stranger), someone who wants to understand, and who is willing to do something for you, and/or to change the way they do things, in order to include you in life, and to help you with what you need or want to accomplish in life (for example).
This is your time to tell them this one thing, and how this change will impact your life for the better.
Here’s what I am asking for with your submissions: Continue reading
Posted in Accessibility, Action, Change, Disability, Environmental Health, Environmental Sensitivities, MCS/ES, Multiple Chemical Sensitivities, Support
Tagged accessibility, advocacy, allergies, autism, communication, community, education, family, fibromyalgia, friends, heart to heart, invisible disabilities, MCS, MCS/ES, ME/CFS, sensitivities, writing
Produced and Directed by Alison Johnson
1:09:28 minutes
Note from Alison Johnson:
“Since 1998, I have made three long documentaries and three short ones. During this fifteen-year period, I have gained a much deeper understanding of multiple chemical sensitivity and its great impact upon so many lives. This new composite film contains the best and most effective sections of my six earlier films. I have chosen carefully which experts and patients to use from my earlier films so that this new film will be an effective way of helping people to understand multiple chemical sensitivity. The film contains footage of interviews with four members of Congress as well as with many important physicians.”
More info and a list of physicians appearing in the film:
http://www.alisonjohnsonmcs.com/multiple-chemical-sensitivity-a-life-altering-condition-dvd.html
Much gratitude to Alison Johnson for all of her work over the years.
Posted in Environmental Health, Multiple Chemical Sensitivities, Public Health, Toxic Trespass
Tagged Alison Johnson, asthma, Chemicals, disability, discrimination., documentary, environment, environmental sensitivities, exposures, Fragrance, GWS, health, MCS, MCS/ES, Mold, multiple chemical sensitivity, petrochemicals, Symptoms
When people develop MCS/ES, it can be extremely challenging maintaining access to jobs, housing, or other services due to the prevalence of indoor air pollution and pollutants, fragrance chemicals being a huge factor. When MCS/ES becomes disabling, it becomes a human rights issue requiring accommodation under the law in many places around the world.
Here then are some accessibility tools:
In the presentation from ADA Audio Conferencing – A program of the ADA National Network
One important point made was this:
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For people with EHS, a wireless-free policy is required, as well as other accommodations mentioned in the presentation.
Here are a few of the slides from Accommodating Persons with Environmental Sensitivities: Challenges and Solutions (which is available to download from the link below):
I’ve created a Research PAGE with links and downloads to a variety of scientific offerings and resources, especially for those who want more published “proof” that MCS is “real”.
May your friends, family and medical professionals be reassured by the evidence.
The Myalgic Encephalomyelitis Association of Ontario (MEAO), along with others, has been working on a plan to get proper health care and supports established for the hundreds of thousands of people in Ontario who are affected by the “often overlapping, commonly disabling and sometimes life-threatening conditions of ES/MCS (Environmental Sensitivities/Multiple Chemical Sensitivity), ME/CFS (Myalgic Encepahlomyelitis/ Chronic Fatigue Syndrome) and FM (Fibromyalgia).”
A quick, easy summary document of the features and benefits of the OCEEH business case proposal for a comprehensive network of care and support has been sent to every MPP in Ontario. Here it is for you too (copied from the PDF 2014 OCEEH IN A NUTSHELL), so you can encourage your local elected representatives to support it in Ontario, and to support similar plans everywhere else in the world:
ONTARIO CENTRE OF EXCELLENCE IN ENVIRONMENTAL HEALTH (OCEEH)
‘IN A NUTSHELL’
“Five percent of Ontario’s population is affected by the often overlapping, commonly disabling and sometimes life-threatening conditions of ES/MCS (Environmental Sensitivities/Multiple Chemical Sensitivity), ME/CFS (Myalgic Encepahlomyelitis/ Chronic Fatigue Syndrome) and FM (Fibromyalgia).
As of 2010, over 568,000 Ontarians had been diagnosed with one or more of these conditions. This number grew from 439,000 in 2005, as reported in Statistics Canada’s Canadian Community Health Survey. It demonstrates prevalence comparable to diabetes, heart disease, cancer and effects of a stroke. These are very widespread conditions, and the 2010 figures are likely underestimates.
Recognition, diagnosis and treatment of these serious conditions are absent from Ontario’s health care system at present. Even though a commission of enquiry recommended services be put into place for ES/MCS as long ago as 1985, exclusion, discrimination and stigmatization of those living with these conditions have been the rule; and Ontario has lost physicians seeking to help these groups.
