Category Archives: Community

Proclamation, Video, and Other News for May 12th Awareness Day

Toronto’s Mayor John Tory has lent (not given) his support with a Proclamation for  for Awareness Day:

“Proud to proclaim today as Myalgia Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities Awareness Day. It is important that we lend our support and understanding to those living with chronic illness, especially as we deal with #COVID19.

 

(I’m sorry there’s no written transcript for the image)
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The Power of This Pause

Guest post by Judy Freed

The Power of This Pause

For just a moment, there is a pause.

A pause from the years of well-intended, ill-informed inquiries:

“So, what have you been up to lately?  What do you do for fun? See any good movies?  Go anywhere exciting? Get together with any friends?”

For this moment, nobody is asking me these questions.  Instead, there is an awareness that “normal” day to day life has been interrupted.  The questions now are almost always something like: “How are you doing?”  “How are you holding up?” “Are you ok?”

Finally – questions that make sense to me; questions I can answer without Continue reading

MCS Awareness Month fb Page

May is MCS Awareness Month, and there’s a new fb page just for this!

If you are on fb, please go “like” the new page, and then click on ‘following’ to choose “see first” so that you can see all the curated material that will get shared over the course of the month, making it easy for you to ‘like’ and share the posts with your fb (and other social media) circles.

As many have noted,  much of the world has had to adopt a ‘lifestyle’ much like we human canaries and other people with disabilities have been living for years, albeit without so many of the additional challenges that disabilities and chronic illnesses bring to surviving daily life.

It would be nice to think that this small taste of what we have been living for a long time will bring about more compassion, empathy, and changes of heart that will inspire people to remove accessibility barriers and welcome us in the world when everyone else is released from isolation.

To that end, we need people to know we exist, as more often than not, there is little to no understanding, or it is trivialized. Sharing info on social media is known to create change, so let’s all be a part of making a better, healthier, and accessible world for everyone.

p.s.

Please leave a comment here if you know of any other groups or people who have organized events or material for MCS (and related) Awareness Month 2020, so that we can all support each other.

Dear Quarantined and Socially Distanced

I’m sorry you have to experience this, but am glad that it is just a temporary experience for you and your family. I personally know how difficult it is (times  1000 or more).

Hopefully if you actually do become ill, it will pass quickly and there will be no lasting effects.

It is more than likely that most of you will have all the medical assistance, food, toilet paper, and everything else that you will need to have available to deal with basic creature comforts and needs, so it will be just the habitual and a few social comforts that are temporarily disrupted for you.

Did you know that more than a few people are not as fortunate, and experience this kind of segregation full time, with no vacations, with few, if any of the relatively easily accessible (to most) basic amenities? And they aren’t criminals!

Say what?

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Find all 25 reasons why I didn’t come (to your party)

There are those who invite us to celebrations, sometimes year after year, but who also refuse to remove the accessibility barriers so that we can attend.

There are 25 barriers in this photo.
Can you find them all?

Click on the image to enlarge it.

Don’t understand?

Learn more here:

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Human Rights and Housing: New Resources for Community Workers Supporting Clients with Chemical and Environmental Sensitivities

Canadian Lawyer Magazine and The Law Foundation of Ontario have shared the news about CERA’s new resources for community workers, to help support clients with chemical and environmental sensitivities in rental housing:

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Video Discussions about Environmental Illnesses, “Sensitivities”, and Disability

It’s not often that we hear people discussing chemical and environmental “sensitivities” and other environmentally linked chronic health problems and disabling  conditions, or how they relate in the bigger picture.

Two such discussions have taken place in August of 2019, and you can watch the videos below.

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Safe Housing Survey

Do you (or will you) need safe housing?

Until the end of November 2019, Health Risk Navigation Inc. (HRNI) is conducting a much needed (yet simple) survey of the housing needs of the chemically injured in order to have quantitative data to show housing providers, communities, policy, and decision makers, funders, and other relevant parties.

This kind of data doesn’t exist currently, so even though safe housing is our core need, there are no official documents that anyone can easily point to.

More details are available on their FAQ page:
https://www.hrni.ca/Housing-Survey-FAQ.php

Some of you may have already done the 1st edition of this survey in June of 2019, when it originally came out. Thank you! Even though the survey now has a different format, those responses are not lost.

You don’t have to do the revised one, but it would be helpful if you could spend the 10-15 minutes to do so… just mention that you completed the original on the last page where people are asked to share any additional comments.

The questions of the initial survey and the current survey are identical, except that the current survey now has four new questions at the beginning  that seek  consent of the respondents to save and share info (largely due to EU privacy laws).

Every question also gives an explanation as to why the data is requested. Additionally, every question (except the consent questions) now gives us the choice to answer “Prefer Not To Say”.

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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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MCS Survey for May 2019

Survey for People with Multiple Chemical Sensitivities (MCS) and/or Environmental Illness and Injury (EII)

Guest post from Mordecai Cohen Ettinger,
The Health Justice Commons

I’ve had MCS for nearly 20 years. I’m a survivor of of the Three Mile Island partial nuclear meltdown, excessive x-ray radiation from medical treatment as a child from a teaching hospital that has since been ongoingly investigated for bioethics violations, and successive exposures to lead and mold from reckless landlords.

I’ve been a community activist for many years, along with a scholar and teacher of Critical Science, Technology and Medicine Studies.

In late 2016, I founded the Health Justice Commons, a non-profit. Our mission is to re-imagine and remake healthcare for our times.

To support efforts for MCS Awareness Month, we want to address the gap of basic research of our experiences.

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