Category Archives: Human Rights

Voices from the Shadows, a Film About ME/CFS From the UK

People with visible and invisible disabilities are often not only discriminated against, but far too often abused. Some of the abuse is from ignorance. Other times it is systemic and sometimes it is political.

ME/CFS, FM, and MCS/ES are often overlapping conditions. Canadian diagnosis stats with more details are here or a simple chart is at the bottom of the page here.

There are 3 dedicated clinics in Canada for diagnosing these conditions (and more, such as EHS). One is in Toronto (with a perpetual long wait list) and a new one just opened in BC with Dr Bested as the clinic director and was immediately overwhelmed with people seeking appointments. There is also one in  N.S.

Some provinces have a diagnostic code for ME/CFS now, and for FM, but not for MCS/ES. The CDC has also recognized it. In the US, people can look for doctors on the AAEM website. (there may be others, I am not as familiar with the US resources).

People in the UK and elsewhere are still trying to get proper recognition and protocols in place so that patients there are also not subjected to more abuse on top of these already devastating conditions.

Watch the trailer of the film here, then  you can link to the full length film from the Voices from the Shadows website. Continue reading

Do No Harm? Disabilities and Discrimination: Elaine’s Story

When we are disabled, we can be vulnerable to discrimination, systemic abuse, and having our basic human rights violated. Like Paul Caune points out in the film Hope Is Not A Plan, “When your civil rights are violated you don’t need a good hug, you need a good lawyer”.

At the very least, we need a good advocate by our side.

Despite Human Rights “recognition”, people with MCS/ES are systemically denied safe access to even the most basic institutions of “care” that most people take for granted  due to chemical (and attitudinal) barriers and discrimination, like with the health-care systems, the very system where our health is supposed to be cared for.  I do believe there’s even an oath that some providers take to “do no harm”, but sadly, as those of us with MCS/ES have experienced, that is rarely the case when chemical and environmental sensitivities are concerned. Add more disabilities, and it can become even more challenging and rare to have our needs met with equality, dignity, and respect.

Take Elaine for example. Elaine has MCS/ES and used a wheelchair full-time for nine years because of a hereditary neurological disorder, Spino-cerebellar ataxia.  With luck, medication, some amazing people, and a reduction in toxic environmental contaminants, her mobility is now much improved.

However, due to these disabilities, she had her basic rights violated at a time when she was most vulnerable, when she required health care.

Elaine’s Story

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Dr Vandana Shiva, Wisdom Woman

Dr Vandana Shiva

Image from Seed Freedom

Image from Seed Freedom

Truth-teller, quantum physicist, heroine, wisdom woman, life saver…

Please watch this short (10 minute) video clip of her being interviewed on GritTV, and if you have time, the longer one from Bill Moyers, to learn more about the very important issues surrounding the corporate control of our global food supply. There are many great interviews available online, and it’s hard to choose or remember which might be the “best”. Here are three that  I have stumbled across again during the past week as I have been thinking of  posting something to honour her and her work. Her book “Stolen Harvest” changed my life’s direction and goals many years ago.

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Hope Is Not A Plan: Video

Hope Is Not A Plan

Hope Is Not A Plan

When your civil rights are violated you don’t need a good hug – you need a good lawyer.

Because most voters with disabilities cannot pay for a good lawyer they have no way to protect their civil rights, which are frequently violated by government, unions and businesses.

You don’t have a civil right if you don’t have a remedy to enforce it.

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Event: MCS/EI/EHS, Housing & Human Rights: Press Conference

Derek Shanks is a 38 year old Toronto based black & white street and documentary photographer.

He recently photographed Olga, a woman who has commented here on my blog at times. The photos and some of her story can be seen on his blog:

All That I Am, All That I Have

Olga also let me know about an event she is organizing for the morning of Tuesday April 16th, 11am, if any of you are in Toronto and can attend to lend support.

Event details are on facebook:

MCS/EI/EHS, Housing & Human Rights: Press Conference

Hospital Protocols for People With MCS/ES

hospital

Some hospitals around the world are developing fragrance-free policies and other less toxic practices, but most health-care environments can still be dangerous places to be for people with MCS/ES, presenting enormous challenges if health care services are needed, as I quoted from the ES-MCS Sensitivities Status Report in the post Canadian Statistics on MCS/ES.

“For ES-MCS sufferers the ideal of ‘patient-centred care’ is currently in stark contrast to realities within the health care system. Knowledgeable healthcare professionals and support workers are so few as to be virtually inaccessible most of the time. For moderately or severely chemically sensitive persons, physicians’ offices, clinics and hospitals commonly are unsafe places to wait, consult, or undergo procedures because patients can be exposed to many symptom triggers emitted from furnishings, cleaning and laundry products, disinfectants, and personal care products on staff or other patients, making their conditions worse. Fragrance/scent-free hospital, home care and rehabilitation services are very rarely available, and there are no chemically safe emergency shelters. Consequently, patients with severe chemical sensitivities may avoid seeking care, risking further deterioration and chronicity, thereby being “caught between a rock and a hard place.”

It can be a difficult decision for many of us when we experience symptoms, whether or not to have them checked out. Sometimes we wait too long, other times we just can’t go because the going is too dangerous for our health. Toni Bernhard touches upon it in Psychology Today, although MCS/ES adds another layer of complications to the decisions:  “5 Tough Choices You Face When Chronically Ill or in Pain

If a trip to the hospital is required, it’s best to be as prepared as possible. If it’s not an emergency, then your choice of the following documents can be forwarded and discussed in advance. Otherwise, carrying paper copies or discs with us at all times could be warranted, in case of emergency.

The following is a list of the best protocols and websites I’ve found, with important resources and documents for people willing and able to take the risks to advocate for themselves or to provide to others so they can do it on our behalf if we are not able.

Hopefully you have the time to go through them and choose what is most suitable for you before the need arises. With any luck, you won’t need them, but it’s good to be  prepared “just in case”. It will take a long time to prepare your local health care providers with protocols to reduce harm (we’re nowhere near the eliminate harm stage)  in advance.

A lot more needs to be done, because until the systemic issues are resolved, for too many of us, it’s far too dangerous to try to access health care.  The necessary negotiations are not feasible when severely disabled, ill, and in need of immediate care that does not exist.  These resources require the ability to work to implement. And there’s no guarantees that if you make progress once, the progress can be built on the next time, as far too often, it’s a start all over again from the beginning process.

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Fragrance: A Barrier to Access

Fragrance a Barrier to Access

Fragrance: A Barrier to Access

When you choose, use and wear products with fragrance, you create chemical barriers to access for people who are disabled when exposed to the toxic chemicals allowed in fragrances.
To be air safe and disability friendly, choose fragrance-free laundry and personal care products, and avoid dryer sheets and fabric softeners.

Not so Equal Access to Health Care in Ontario or Systemic Barriers to Access for People with MCS/ES

Do We Not Have the Right to a Healthy Environment?

The way things are now, polluters have more rights to pollute than we have to clean air and water. That is not the way it should be, and it can be changed.

air and water

In Brazil, they now have the right to a healthy environment!

From Ecojustice, where you can learn more and take action:

the Right to a Healthy Environment

But it’s not just chemical plants and industries that pollute our air and homes. 

People  also seem to expect the right to do what they want on their properties, even if that activity impairs the ability  of someone else next door or down the block to breathe  on their property.

Woodsmoke, tobacco smoke, pesticides, herbicides and toxic laundry products are some of the things that also leave the user’s property and enter neighboring  properties and homes, with sometimes devastating effects on the health of people and pets.

I think our right to do what we want on our own property should not include the right to prevent the next person from breathing properly on their property.

What do you think?

Happy New Year!

May this coming year bring what’s most needed!

 Happy New Year!

Thank you to everyone who has read, followed, commented and shared here.

I hope that as I heal, I’ll be able to bring more helpful and relevant information to you.

I hope that those of you who need to heal, can meet with the circumstances that will allow that to happen.

Happy New Year!

The Right to Healthy Indoor Air

ABSTRACT
Indoor air quality is an important determinant of health and wellbeing. However, the control of indoor air quality is often inadequate, one reason being the poor articulation, appreciation and understanding of basic principles underlying policies and action related to indoor air quality. As a result, the general public is familiar neither with those principles nor with their associated rights. A WHO Working Group was convened to agree on a set of statements on “The right to healthy indoor air”, derived from fundamental principles in the fields of human rights, biomedical ethics and ecological sustainability. This document presents the conclusions of the Working Group, informs individuals and groups responsible for healthy indoor air about their rights and obligations, and individuals by bringing those rights to their attention.


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