Tag Archives: barriers

Are the Wrong People in Solitary Confinement?

Who should be isolated?

The poisoned or the poisoners?

When we develop MCS/ES, we are told to avoid the triggers that disable us. Yet, far too often, fragrance chemicals are the biggest triggers of disabling effects, yet they are in everything, and everywhere now.

To follow doctors orders, and to have some quality of life (like the ability to look after ourselves), when others at work or elsewhere won’t stop using toxic products,  we have to stay isolated in our homes (if we’ve found a safe one).  It’s just like being in prison… but for crimes we did not commit.

WE who are immediately disabled by these harmful pollutants are being forced into prisons of isolation for crimes the chemical and fragrance industry are committing, like when they hide  oil and gas industry toxic waste chemicals into everyday products and materials, without listing them on labels, they are causing a public health crisis, a crisis that  most people are unaware of.

WE who become disabled are being imprisoned for their crimes of saturating people (and our air and water) with toxic chemicals, and so, if we are to be able to see our friends and loved ones, we need to be protected from them, in environments kind of like this:

 

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V’s Canary Cries

Guest Post by V from the USA

This was originally posted to an online support group. V granted her permission to share it here. She has been able to put this part of her life story into words that so many of us find hard to express, and I thank her deeply for sharing her words with you too.

 

Canary V

It’s about 1:30 a.m. and this is about the time where I start to feel despair about everything in my life. I just can’t seem to adapt to the isolation and lack of a routine or purpose. Also, I can’t seem to find any pain meds for my chronic pain. I have been in physical pain for so long.

I know this post may seem disjointed which is apropos considering how I feel.

I AM so tired of spinning my wheels…Along with MCS I have so many other medical issues…non terminal that I know of but still…I have asthma and allergies.. I can’t be around dogs or cats, the weather determines my breathing status for the day and my physical mobility.

I can only eat about 10 things and it’s exhausting to try to rotate these foods and I spend excessive time trying to plan. Even planning a rotation I still get itching throat and sometimes a swollen throat with some of the ten things I think I can eat…it’s horrible to start eating and not know how I will feel ..

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Guest Post: Euthanasia and Disability Rights

Monique and I both live in Ontario, Canada, where there are new discussions happening both provincially and federally regarding “assisted suicide”, “death with dignity”, the right to die, and euthanasia (I may have missed a few other terms used).

We both have MCS/ES, and are confronted with systemic discrimination and barriers to access with almost every breath we take. Breathing is not optional. And we are not alone. There are hundreds of thousands of us in Canada, and millions around the world.

Open letter in support of Euthanasia and Rights for those with diseases that defy accommodations

Guest Post by Monique

I Am Easy to Ignore

I am female
I am over 60
I am divorced and alone
I am a student
I have lower employability
I have invisible disability
I was abused
I have depression + ADD.
I do not feel strong

The biggest and most painful ordeal is people who lack the ability to reduce the perfumes they wear in public… who value their vanity above the good of others. I cannot exist without the kindness of strangers. I do not want to live without my Right to life-sustaining air. I do not want to explain why I cannot breathe your scents and subsist in the lifestyle you value and have grown attached to. I cannot live in your chemical soup.

I am a canary. I have MCS. Although canaries have saved many from disasters, their deaths are never celebrated. I feel like I will soon be sacrificed so that many will continue to breathe good quality air.

I would like to give a voice to those canaries. I’d like to call upon every canary on this planet to stand up and be counted. I want every canary not to die in vain. Continue reading

Accessible Meetings Guide Addresses Chemical and Electrical Sensitivities

Another great resource shared by Mary Lamielle, this time on how to make events accessible for people with MCS/ES.

Accessible Meetings Guide Addresses Chemical and Electrical Sensitivities

The new online resource from ADA Hospitality, Accessible Meetings, Events & Conferences addresses chemical and electrical sensitivities in their planning process.

“The guide is an updated version of a 1993 work authored by June Isaacson Kailes and Darrell Jones. The Mid-Atlantic ADA Center and TransCen Inc. sponsored the update and publication in recognition of the 25th anniversary of the ADA. The updated version includes both regulatory updates along with practical guidance from meeting planning professionals and subject matter experts.

Mary Lamielle, Executive Director of the National Center for Environmental Health Strategies (NCEHS), was invited to comment on the 1993 Guide for the update. She made extensive recommendations addressing the access needs of people with chemical and electrical sensitivities.

The following pages include the NCEHS fact sheet Planning an Accessible Meeting or Event for People with Environmental Sensitivities or Intolerances and recommendations that were incorporated into the just-issued guide. Those with environmental sensitivities are urged to use the fact sheet and the guide to substantiate individual disability accommodation needs and to ensure all meetings are healthier for everyone.”

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It’s Only A Little Fragrance

How many times have we heard it’s “only a little fragrance”?

Telling a person with MCS/ES that there is “only a little fragrance”

is like

telling someone with Celiac Disease that there’s “only a little gluten”

or

 telling someone with a peanut allergy that there’s “only a little peanut”

or

telling someone who uses a wheelchair that there are “only a few steps”.

It’s not ok.

telling 103It’s NOT ok.

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Have Your Say for May by Leah

 

Before I got sick, I was a dog trainer. My life was centered around my dogs,maybe too much, but I was happy. I taught basic classes, worked with serious behavior problems, and competed with my own dogs. It was my culture, and my life.

As MCS started to creep in, it make more difficult and even dangerous, to continue. To have poor reflexes or to miss something because I was brain fogged, could be the difference between success and failure, and sometimes failure meant a bite.

So I had to give it up. But I didn’t give up my personal dogs. While the number of dogs has diminished, I still have 3 beautiful and wonderful dogs left that keep me happy, keep me laughing and keep me sane. They make me get up on the bad days, cuddle with me when I’m sick, and keep my spirits up when I’m sad. And on a really good day, I train.

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Fragrance Free Environments and No Fragrance Spaces

Someone shared a very good PDF handout with me the other day, one that I had never seen before. It gently explains to people why there is a problem with fragrance, why people may need to avoid fragrances, that it is not the smell, it’s not personal, and a few other bits of helpful information  The resource links are old and could be updated (somehow), but it’s otherwise a great tool to share with people who don’t understand.

I can’t find a link to share it from elsewhere, so I am posting it here to make it easily available.

Fragrance-Free Environments and No-Fragrance Spaces (PDF)

Fragrance Free Environments and No Fragrance Spaces

The text image is copied below.

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