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

ReBlog: Are YOU drinking the Keratin Complex Kool-Aid?

I just discovered a blog (thanks Women’s Voices for the Earth) dedicated to “create awareness, and protect people from the harmful toxins that are so regularly used in the beauty industry, most notably that of the Brazilian Blowout.”

“Pretty Toxic” was created by Jennifer Arce and Dawn Marino, two hair stylists whose lives have changed after contracting formaldehyde poisoning from the hair smoothing product known as the Brazilian Blowout being used in the salons they worked at. The site serves as an educational and informative tool for stylists, consumers and the general public in an attempt to protect others from toxic exposure to chemicals in beauty products.

From their post on the 13th Annual Stylist Choice Awards:

While Martino Cartier accepted the award on behalf of Keratin Complex he said:  

“Thank you for drinking the Kool-Aid, and thank you for believing in Keratin Complex.”

Oh Martino, Martino, Martino!! We had to rewind it to just make sure we heard him right, but yep, that’s what he said!!

“Drinking the Kool-Aid,” according to Wikipedia, “suggests that one has mindlessly adopted the dogma of a group or leader without fully understanding the ramifications or implications.” And also, “refers to a person or group holding an unquestioned belief, argument, or philosophy without critical examination.” So this made us wonder…

Did you know Coppola/ Keratin Complex has the second most injuries reported to the FDA according to documents made public in 2011? Yep, but don’t take our word for it, check it out for yourself! here:

via Are YOU drinking the Keratin Complex Kool-Aid?.

nails-on-a-chalckboard

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

Continue reading

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.

Continue reading

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.

Continue reading

Sandra Steingraber and Toxic Trespass on Bill Moyers: Video

For anyone interested in environmental health and the health of children, Sandra Steingraber is an inspiration and wealth of information. She has written several books and many articles. Her first book, Living Downstream, was turned into a feature film.

Biologist, mother and activist Sandra Steingraber discusses her fight against fracking and toxins contaminating our air, water and food.

Steingraber returns often to the concept of “toxic trespass” — which “means that chemicals without our consent enter our body sometimes because we inhale them”

Here she is in an interview with Bill Moyers, (you can watch it here or go to his website) and the link to her website is below, where you can access many of those articles and order her books.

Continue reading

“Sensitive” to Pollution #3

"Sensitive" to Pollution 3

Is there anyone who isn’t “sensitive” to pollution?

Sandra Steingraber: Prepared Sentencing Statement 2013

Sandra Steingraber was arrested while demonstrating against fracking. Sandra is one of my heroines.

“In my field of environmental health, the word trespass has meaning. Toxic trespass refers to involuntary human exposure to a chemical or other pollutant. It is a contamination without consent. It is my belief, as a biologist, that Inergy is guilty of toxic trespass.” …

“In closing, my actions were taken to protest the trespass of Inergy into our air, water, bodies, safety, and security. My small, peaceful act of trespass was intended to prevent a much larger, and possibly violent one.”

Sandra Steingraber: Prepared Sentencing Statement for the Reading Town Court, April 17, 2013.

She has written a lot about the dangers of fracking, as well as other environmental health issues that affect us all. Well worth checking out what she has to say.

I have heard Sandra speak once, after I read her book “Living Downstream” but before “Raising Elijah” was published. In fact, it was very shortly after he was born that she was there. Sandra was in Toronto again just before I left, and a friend (because I was too sick to go) brought me this wonderful gift from her :

Continue reading

Suffering, Kindness and Compassion

I’ve been seeing and feeling a lot of suffering recently. Why is there so much suffering in the world? Greed, intolerance, self-importance, judgements based on ignorance, and carelessness are a few things that come to my mind. These create poverty and all kinds of other forms of destruction, destruction of self and other.

The effects are far reaching and yet with just a little effort, so much suffering can be prevented and alleviated.

How do we prevent unnecessary suffering? How do we relieve suffering?

injustice

Continue reading

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