Tag Archives: systemic discrimination

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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Published: “Invisible Barriers, Invisible Disabilities, Invisible People”

My article “Invisible Barriers, Invisible Disabilities, Invisible People”   is now available to read in the

Special Issue on Ecopsychology and Environmental Sensitivities:
Chemical, Electrical, and Beyond

All the articles in the entire special issue will be available for free until Sept. 5  2017, which is unprecedented access!

Please check them out and share as widely as possible!

 

Table of Contents:

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Why I LOVE Having Environmental “Sensitivities”

Guest post

In all of this I don’t have a permanent place to stay and paid rent to a landlord who won’t fix anything, my apartment insurance cut me off and won’t help with my possessions, my medicare health insurance is not covering the health aspect and my one doctor wants me to see a doctor out of province which is not covered, and my social assistance did not pay me my disability this month, and family does not understand any of this….At this point I have nothing to lose and everything to gain….I AM MOVING FORWARD!

~ Marie LeBlanc, Manitoba, Canada

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When a Friend’s Life Is Being Threatened

Guest Post

A few of us in the MCS community have been burning the proverbial candle at both ends and in the middle, trying to generate public awareness and interest to persuade the NS housing authority to reconsider their 3 year battle to evict our good friend Wendy, despite no accessible alternatives being available.

Their unwillingness to understand and accommodate her disability and her medical team’s recommendations… well, it’s something a lot of us have faced and are facing.

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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

The Effort and “Inconvenience” of Single-Handedly Trying to Remove Systemic Barriers to Access

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When she needed accommodation, you won’t believe the rigmarole that ensued.

(unless you have MCS/ES)

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“They should not have to make significantly more effort to access or obtain service. They should also not have to accept lesser quality or more inconvenience.”

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Someone with MCS (who wishes to remain anonymous) was asked about how her efforts to receive appropriate, safe, accommodation were going, so she could see a health care provider. She is one of a growing number of people who become disabled from exposures to toxic chemicals found in many everyday products and materials, especially in fragrances.

This is pretty much how the story goes:

She contacted a health care provider by phone and talked to a receptionist.

She asked her if they had a scent-free policy and was told they didn’t.

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Assistive Devices For People With MCS/ES

For people with MCS/ES, assistive devices can allow us to remain functional, independent, and able when we can’t control everything in our environments.

MCS ES assistive technologySlide with a few options from New MCS/ES Accommodation Resource

In addition to fragrance, chemical, and wireless free policies, these and other devices can help reduce or eliminate exposures to the pollutants that can otherwise completely disable people with MCS/ES. They can make the difference for people to remain employed when provided early enough, effectively minimizing the effects of MCS/ES.

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Home Dental Extraction SUCCESS (#2)!

Another One Bit the Dust

I survived my second home extraction on the weekend. It was a very infected tooth, an upper rear molar, one that I had somehow managed to retain a year longer than expected. It was actually the first one to get infected last year, but then the other tooth went ballistic, and by the time that extraction site healed, this tooth had calmed down enough to be very useful for eating with.

In hindsight, waiting so long may not have been such a great idea, as in the end, the infection was nasty. Very nasty. It put me into a terrible funk that was really difficult to push my way through, similar to the depression some kinds of mold can cause, and created the same challenges MCS/ES exposures cause, like brain fog, difficulty thinking and doing things, and a real lack of energy. And it stank when pulled. Really stank.

I am so grateful for the home visiting dentist in this area. Not only is he fragrance-free, but he is willing (and able!) to take other precautions to make things safe for me.

Last year, before my first home extraction, we discussed everything that was needed for the procedure, and what was necessary to make it as safe as possible for me.

This year I couldn’t find my old list (despite seeing it a month or 2 ago) and hoped he remembered his. This is what I do remember, and what we did:

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