Banning Asbestos – The Personal & the Political

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For the Day of Mourning on April 28th, a broad coalition of asbestos victims and family members, labour, health, environmental and NGO organizations have banded together to call for a ban on asbestos in Canada. Under the umbrella, “Ban Asbestos Canada”, the coalition is calling for a comprehensive strategy to address the lethal legacy of asbestos.  Examples of strategic initiatives would be looking into early detection, increased research, improved screening and safe disposal/removal of asbestos.
Linda Reinstein, the co-founder of the Asbestos Disease Awareness Organization (ADAO) in the U.S., is involved in these discussions as she sees a connectivity between Canada and the U.S. on banning asbestos.  Reinstein says,
“For decades, the U.S. bought chrysotile asbestos from Canada. We’ve seen the callous profiteers, miners and users, profiting over people.”

However, Reinstein says she’s hesitant to use the word ‘ban’ because it sounds like such a simple solution to an extremely complex, layered issue.  From exposures in the workplace, schools, and hospitals and to volunteers helping with natural disasters, asbestos is a ubiquitous problem which must look at prohibiting use and imports, establishing medical programs, outreach and education and workers’ safety programs for those working in contaminated buildings, Reinstein adds.

“I want to stop the import; we’re still importing asbestos since the 1900s which is horrific.  Over the last 150 years, we have consumed over 31 million metric tonnes, 31 million metric tonnes. That’s huge and that means it remains in building, in schools, communities, you know, we have a long legacy of asbestos issues.”

The knee-jerk reaction to banning asbestos, once known as the “magic mineral”, is that it’s the only economically viable option.  As Linda mentions, this notion is a complete fallacy: “It’s manageable when you do ban asbestos.  You know, there are economically viable substitutes, there’s implementation programs.  Countries do not falter and waver on the brink of bankruptcy because they banned asbestos.  So we need to get that notion out of people’s minds.”

To battle this misconception, the Ban Asbestos Canada campaign has pointed to the 56 other countries who have banned the use, exportation and importation of asbestos, such as the UK, France, Australia, Japan and Germany.  In its place, the coalition is asking for a safe substitute, which could simultaneously create Canadian jobs.  For example, manufacturing asbestos-free brake pads that are already being fashioned in Guelph, Ontario.

Linda Reinstein’s Story

For Linda Reinstein, the political is personal.  Linda’s husband, Alan, was diagnosed with mesothelioma in 2003 and her advocacy started shortly after.

Prior to being diagnosed, Linda said that Alan experienced the classic nine months of misdiagnosed symptoms, with no clear diagnosis of what was causing his pleural effusion.  The experience was an emotional roller coaster: “Alan went through these tests and he would get ‘negative, negative’, we were jubilant thinking ‘oh great, it’s not cancer, it’s not this, it’s not that’ but we didn’t realize the false negative was so high. So we felt we did all the right stuff in our lives and then unbeknownst to us, Alan was suffering from an aggressive, terminal disease.”

While Linda can’t be sure, she says that his diagnosis was probably a combination of occupational and non-occupational cancer as he worked in home repairs (e.g. with stucco walls) and in a shipyard in the 60s as a metallurgical engineer.

When asked who she directed her anger towards, Linda responds, “My anger was sort of widely distributed. I was angry at the government, I was angry at the manufacturers who make products, I was angry at the employers who bought those products…This manmade disaster has been caused by over 100 years of time, and frankly, ignorance. I was angered by many different aspects of asbestos: I wanted my life back, I wanted Alan’s life back, I wanted my daughter’s life back. But I always say, there’s no rewind button in life.  I had to accept my new normal and do the best I can to take care of my husband who was very ill and be the best mom I could be.”

Instead of being consumed by her anger, Linda turned her anger into action by co-founding the Asbestos Disease Awareness Organization.

“ADAO was actually borne out of pain, fear and anger.  The pain of having someone you love being diagnosed with a terminal yet preventable disease was overwhelming.  Alan was sixty-three and my daughter at the time was ten.  The fear of losing Alan and the fear of the unknown was huge. Would he ever work again? How long would he live? How would our lives change? Could we survive? And then the anger; the anger to know that all of this could have been prevented had Alan not worked or been exposed to asbestos.”

Linda started with a visit to Washington with her 11-year old daughter.  Senator Patty Murray was introducing a Bill to ban asbestos and Linda was determined to go.  As they waited in line for Starbucks and other places around Washington, Linda started to realize “that something was deeply wrong in our country because people would say ‘it happened to me, it happened to my family’ and then I was like ‘wait a minute, this isn’t that rare disease that I’ve been told, it’s just underreported.”

When she came home, Linda said she knew she needed to do something “fast and dramatic” Linda reflects back: “So I came home from LA, put on a baseball hat, went to a friend’s, we set up a website and I had no mission vision, financial planning, nothing, other than the feeling I knew I needed to do something.  That if I didn’t, mesothelioma would claim my life too, because I was really angry and I was so scared and I would cry in the garage, just turn off the lights and cry.  Like what do you do to help your family when your husband’s diagnosed? How do you do your homework with your child? I don’t know if anybody in your family has had cancer but it’s not just the patient; cancer impacts the entire family.”

Linda met Doug Larkin at Senator Murray’s briefing and they became instant friends. Doug was also feeling anger, as his father-in-law, Bill, had been diagnosed with mesothelioma.  Together, Doug and Linda cofounded ADAO, which takes a three-pronged approach to preventing asbestos-caused diseases:

  • Educate the public and medical community about asbestos-related diseases and preventing asbestos exposure. Support research that leads to early detection, prevention and a cure.
  • Collaborate with organizations around the world for a global asbestos ban. Raise awareness that asbestos is still legal and lethal in the U.S.
  • Unite asbestos victims to reduce isolation and strengthen community action through social networks and ADAO’s Share Your Story platform.

One of the biggest strengths of the campaign, in Linda’s mind, is the organization’s ability to blend social media advocacy and social media story-telling.  In order to get people to care, Linda says she has to be able to tell her own story, the story, a shared story so that people understand this is a real issue.  Linda says that when she started out, “I was a TEDx speaker in my community, I began testifying in front of Congress, I was able to share my story – when I say my story I mean a shared story, it’s not just Linda and Alan, it’s the Linda and Alan’s of the world.”

Now, the ADAO is the largest independent asbestos victims’ organization in the U.S., and has has shared stories from all across the U.S, and abroad from countries like Canada, Australia and South America.

“Asbestos victims find it cathartic and empowering to channel grief and anger through storytelling. We all want our stories to be heard, felt, remembered, and shared. As I like to think, sharing makes us stronger,” says Linda.

For those whose lives are impacted by asbestos, Linda says the most important approach is not to lose hope – there isn’t a cure yet but there are improved treatments and communities where they can give and receive support, such as the ADAO.

Linda says, “Every person who I’ve asked for help has extended their hand. Even if they didn’t understand or maybe they didn’t feel it was the issue they were really passionate about – every person has helped me along this journey. It’s amazing.  People understand that it’s health, it’s safety, it’s basic human rights, it’s a disaster that never should’ve happened.”

For more information on the ADAO please visit: http://www.asbestosdiseaseawareness.org/

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