Linda’s Reinstein’s journey from “contented PTA mom” to global activist was swift and brutal.
When her husband Alan was diagnosed with mesothelioma in 2003, the couple quickly realised, like many before them, they knew nothing about the disease.
“I had never heard of it. I felt so stupid,” Mrs Reinstein says.
“We were told Alan had six to 12 months to live and I didn’t even know what asbestos was. There was rage, anger, fear. I had no one in my corner. I needed to do something or I would just get consumed.”
Within a year Mrs Reinstein (pictured right with her daughter and husband), based in Manhattan Beach, California, had co-founded the Asbestos Disease Awareness Organization (ADAO) with public relations specialist Doug Larkin.
It was a steep learning curve. While nursing Alan through aggressive EPP surgery and then chemotherapy and looking after their daughter Emily, Mrs Reinstein determined to speak to every medical expert she could, to galvanise community involvement and to advocate for a ban on asbestos in the United States which, despite irrefutable evidence of its dangers, continues to be imported into the United States at a rate of about 1,180 metric tonnes a year.
“When I first began researching, I felt I had been fooled by my government. There seemed this fatal perception that asbestos had been banned,” she says.
“The US has given way to the fear of change. The science is validated but the fear of liabilities and costs to businesses overrides it.”
Her campaign has led her to Congress, the US Senate, the US House of Representatives, the US Environmental Protection Authority, among others, and even the United Nations World Congress in Turkey to present evidence of the dangers of asbestos. “Flag waving and coffin carrying are not my style. I want to be a stakeholder with a seat at the table,” she says.
In addition, she is a frequent public speaker on asbestos issues in countries such as Japan, Mexico, China, Italy, India, Canada and Brazil.
When Alan died in 2006, Mrs Reinstein simply worked even harder. “When Alan passed away I had unlimited time and serious grief. ADAO became my sustenance. It gave me a sense of purpose. It filled that empty space of Alan. I credit ADAO with saving my sanity.”
Her dedication has paid off. The ADAO is the largest US non-profit organisation committed to education and advocacy for asbestos victims with more than 20,000 people in its network.
Key to its success is its use of social media. You will find ADAO’s presence not only on Facebook and Twitter but YouTube, LinkedIn, SlideShare, Tumblr, Twylah and Pinterest. The wealth of news, research findings, feature pieces from around the world and community stories in this digital treasure trove is impressive.
“Everything we have done has been was digital: 2004, when we started, coincided with some of the biggest technological change but 2008 was when I really saw phenomenal change.”
Despite this, Mrs Reinstein admits that she was dragged into the digital age by her daughter. “Emily wanted to create a personal Facebook page for me and I totally resisted. But I quickly learned that telling a story is the most powerful tool anyone can have in their toolbox. I gave up my privacy because I wanted to share my story.”
In 2009 Emily created the ADAO’s Facebook page. “And within a year we had $5000 in donations that we hadn’t even asked for. I was forced to learn how to harness Facebook and Twitter. Facebook for sharing information and creating a community, Twitter for fast bursts of news.”
Despite her success, she describes herself as an “accidental activist who would have been just as happy being a PTA mother.”
It is clear, however, that this would-be PTA mother makes a fearsome opponent and a tenacious advocate. “I am fearless and driven and I believe if we collaborate, we can make a difference.
By Catherine Madden