Mahatma Gandhi once walked 240 miles to make salt at the edge of the Arabian Sea. It was an act of treason. A way to subvert British rule. It was classic civil disobedience: a simple, deliberate act of life sustaining labor designed to thwart an unjust rule of law.

Every person requires salt to live and yet it was illegal in 1930′s India for any Indian to harvest salt from the sea. Salt was taxed and sold only by the British. By controlling a necessity of life the British were able to exert control over the majority they ruled.

Gandhi understood the power of simplicity over the power of tyranny. He wielded that power with grace and precision. He made salt. He spun his own cloth. He founded an ashram. He walked his talk, and ruled a nation. There was power in reclaiming HIS right, to sustain HIS life, in HIS own way.

As almost any chemically injured person will tell you the very first thing we lose with this disease is control. The loss of power often follows the loss of control, and if we lose the ability to work, medical bills mount as assets dwindle. Toxic homes push the most severely effected of us outside to live alone in cars, or worse. It ain’t pretty and yet somehow against all odds most of us — not all — but most of us, survive to eventually find some semblance of stability in our lives.

So, how do we do it? How do we fight back and reclaim our lives? There are as many answers to that question as there are chemically injured people. We each find our own chosen way.

I believe there is a bit of Mahatma Gandhi in everyone of us. Gandhi made salt. Some of you make soap, create jewelry, gaze at the stars, carve wood, write poems, practice photography, quilt, paint, build websites, write legal briefs, or simply listen and provide vital emotional support.

These are all equivalent acts of simplicity, creativity, frugality and subversion. One act no greater than the other. Each as potentially empowering as The 1930 Salt Satyagraha, which began on March 12th, and ended at the Arabian Sea on April 6th, 1930. A spring walk worth remembering.

Beware of Cybercharlatans

Be Wise of the Six Sins

Nurturing the Aspen Grove

“Presently, the chemically injured community reminds me of a great colony of quaking aspen trees… A grove of quaking aspens is symbiotic and each tree’s survival is linked to the entire colony. A single aspen tree may only live above ground for perhaps one hundred years, but the root system lives on sprouting new trees into life for thousands of years spreading the colony over many acres of forest throughout time. Aspens are also a pioneer species. They thrive in sunlight and take root after even the most intense forest fires and disasters, just like some of us.”

By Lucinda Hodges

from

Under the Iron Heel

Leadership is an intangible quality. For me a leader inspires us to be the best we can be, both as individuals and collectively. A leader instills passion, vision, ownership, direction, connection, commitment and hope for the future.

Leadership is the heart and soul of every strong and effective community; a unique indelible trait to be nurtured and developed. Though we certainly need to build bridges with outside groups and organizations, we would be wise to encourage and promote genuine leadership from within our own ranks. We are such a diverse, intelligent, educated, creative and tested group of people — most of whom are yearning to contribute more — especially towards building community, virtual, or otherwise, and that talent does not deserve to be squandered simply because we are ill and injured.

We are all acutely aware of the unique challenges the chemically injured community faces. Many of us are housebound, disabled, poor, and unable to travel. We are largely isolated from each other, invisible to society, and we depend primarily on the Internet for connection and support. It is this, the very cruel nature of chemical injury, which has historically impeded the development of unified community leadership and the hope of strong, viable representation we can all be proud of.

Perhaps, redefining who our community is in this virtual age is a good place to begin building it. Though there are millions of chemically injured, chemically sensitive, and environmentally ill people in the world, only a few thousand of those injured people engage in an online community. Of those few thousand victims and survivors, only a few hundred are dedicated to participating in our cyber-city-halls: the Internet lists, forums and websites. In my estimation this dedicated online-cadre of people represent the best and brightest among us, and this is where I believe our future, and our leaders, will spring from.

Fortunately, over the past decade the Internet has vastly increased our ability to access information to become well-informed patients and advocates for our own self-care. As we have become more savvy and educated, we are discovering we can use technology as a tool to achieve many of our goals including civil discourse and transparency in our community.

So, now that we know who we are, and how we meet, and exchange ideas. Where do we go from here?

Using the Wisdom of the Ages

One way to tackle the intractable challenges we face is to use the wisdom of the ages. Native tribal councils served our ancestors well for thousands of years and those basic elements of human nature, earthly boundaries, instinctual self-preservation, spiritual connection, generational foresight and careful council consensus will still guide us in our online community halls. We can combine the ancient wisdom of native tribal councils with the innovative use of technology as a way to nurture trust, create transparency, develop democracy, and foster leadership to form a common message that can be distributed and discussed in the greater population. This concept similar to, Wisdom Councils, could easily be modified to work in an Internet-based community. The only real question is. Will we take charge of our own destiny? If not, who will fill the void within our community for us?

Beware of Cybercharlatans

When it comes to online community halls, which offer us many tangible benefits, we are, unfortunately, very susceptible to being preyed upon by cybercharlatans or greenwashers. I think greenwashing exists within communities as it does in consumerism. Most of us carefully read the labels of the products we buy. We must also be watchful media consumers and consider who is providing the information we read and what their motives may be.

By extension, we must be streetwise in cyberspace and avoid the pitfalls of being vulnerable to online imposters by learning the basic terms for Internet scamming such as: Sock puppets, Meat puppets, Astroturfing, False Flags, Front Groups, and Internet Trolls. To protect our community, we must be on the lookout for people whose identity exists only in the digital world; this is termed online reputation and is an obvious indicator of pseudonymity, which is the hallmark of an online personality, who appears to work alone and may operate a front group website.

Be Wise of the Six Sins

To illustrate how cybercharlatans operate I have taken TerraChoice’s six sins of greenwashing and applied those sins in terms of online red-flag behaviors we should be wary of so we can be astute and discerning community hall consumers.

1. The Sin of the Hidden Tradeoff … A major red flag indicating a possible cybercharlatan is the use of censorship. Be circumspect of online lists, forums and member-based groups where your words, thoughts, ideas and/or interactions between members or list mates are unreasonably moderated. Charlatan list owners will justify blocking posts for the sake of harmony; but the hidden tradeoff will be the sacrifice of full disclosure of pertinent facts. Remember, information is power and without accurate information we can not make our own informed choices. Don’t blissfully give away your right to make your own decisions.

2. The Sin of No Proof… Another major red flag of a cybercharlatan is a claim or statement which can not be easily authenticated with facts. Always look for substantiating proof of legitimacy especially if you are giving money, gifts or intellectual property. Bona fide non-profit organizations, such as Code Pink, will display their tax exemption number on their website. Don’t donate money or buy goods and services from a charitable organization, without first obtaining a tax exempt number. Furthermore, a reputable organization will proudly display board members, technical advisors, editors, projects, campaigns, petition signatures, as well as the names and credentials of consulting peers and peer organizations. Do not be convinced that facts don’t matter. They do matter, especially to the charlatan, who can only thrive in the absence of your asking for the facts. Thus, knowing the facts is crucial, and so is transparency of process and the open flow of information.

3. The Sin of Vagueness… Red flag number three: A claim that is vague is meaningless since it can not be defined or verified. A prime example: “Oh darn, I had that non-profit number, but I can’t seem to find it anywhere, let me get back to you on that!” You wouldn’t purchase a bottle of shampoo without a label on it; so don’t trust a group or website without a label on it. If you are a member of a health or medical website, look for the Health on the Net Foundation accreditation. Don’t trust claims that aren’t clear enough to make sense or be understood. One example is, “Yes, all decisions and finances are approved by the board, but I don’t have time to share that information.” This is a clear example of the sin of vagueness from a cybercharlatan.

4. The Sin of Irrelevance… This sin is a double-edged sword, and the red flag works both ways for spotting cybercharlatans. Never let a list owner, group, forum, or individual convince you that your questions are not relevant. If an issue matters to you, then insist that your questions are answered or else leave the group or list — especially, if you are asking for real world information such as a mailing address. On the flip side, don’t accept irrelevant information. Be a healthy skeptic and don’t fall for conspiracy theories or accusations that don’t ring true. Unending tales of high drama, crisis and distress may be camouflage to misdirect individuals and the community from seeking relevant information that will hold value and be illuminating of the character of a person or organization.

5. The Sin of Lesser of Two Evils… Another classic tactic of the charlatan greenwasher is to excuse their own bad behavior, such as temper tantrums, irrational rants, or scorched earth policies towards medical experts, peer lists or groups by claiming: “I had no choice. They made me do it!” Or: “I am allowed to be grumpy and irrational because I am ill and I live for my work!” These claims may hold some truth, but draw us away from the real issues and larger challenges. A genuine leader, list owner or forum moderator would not use these methods of persuasion. Don’t accept bouts of anger and verbal abuse, veiled under the guise of the lesser of two evils. This is frequently a bait-and-switch trick to turn you away from the true source of angst and hide the facts from you. Two wrongs still don’t make a right in the cyber world or otherwise.

6. The Sin of Fibbing… Ah, this is an easy red flag to recognize from a cybercharlatan or greenwasher: a lie is a lie, is a lie, is a lie. Don’t be quick to overlook misrepresentations. Often behind one false flag will lay a web of deceit.

Nurturing the Aspen Grove

Above all else, use your common sense and realize that every one of us will make occasional mistakes, but it is a series of red flags that should make you rightfully question your allegiance to a list, group, forum or organization.

Also, keep in mind there will always be disagreements and conflicting opinions between smart, informed people — that’s politics folks– and we need to be a part of our own politics; because politics are about who has power and who does not in a civil society. In a working democracy, we don’t use weapons to win a battle, we use the power of our thoughts, ideas and words.

Finally, once you have sorted out the astroturf, charlatans, trolls, sock puppets and greenwashers, think of one another as neighbors and give support and encouragement. This is what will make us a real community: when we know where our loyalties lie and who we trust, we will be a source of strength to each other and therefore, a power to be reckoned with.

Lucinda Hodges lives in Montana where she home schools her children, tends her garden, wild crafts herbal remedies, and writes and maintain websites for Pariah and Toxic Trains.

I quickly learned that the term, multiple chemical sensitivity, was coined by Dr. Mark Cullen in a monograph he wrote in 1987. Unfortunately, with a little more research it became clear that over the course of the next twenty years Dr. Cullen never fully examined the injury he dubbed “MCS” so long ago.

The problem lies with Dr. Cullen’s belief that MCS is not a treatable injury or disease, but largely a psycho-social behavior. In Cullen’s own words, testifying in Perth Australia, in 2002, “Many of my colleagues, with some credible evidence on their side, believe that the role of chemicals is entirely symbolic. I want to make sure you understand that that is a credible view in the world. It does not mean they have no role but that the role is best viewed behaviourally in the way our dog behaves when it smells or hears something that makes it jump up, scratch and so forth. What happens after some experience with chemical odours is a behavioural response. It is a view that is in the community and one that cannot be completely dispelled.”

Dr. Cullen is testifying FOR Alcoa and AGAINST the claims of injury made by poisoned workers. Plainly put, the doctor who named the condition is no friend of ours. He testifies against injured people and plaintiff’s on behalf of multinational corporations which has presented a nearly insurmountable medical and legal obstacle for those who use the term, or who have been branded by it, since 1987.

Rather than follow the science, Cullen followed the money. In 1996, as Director of Yale Occupational and Environmental Medicine Department, he formed a lucrative alliance between Yale and Alcoa, the worlds largest manufacturer of aluminum. I have no doubt that Dr. Cullen is proud of this public health – corporate – medical – conglomerate. But, what about us? Is it in the best interest of public health and scientific integrity for one of our most prestigious Universities to meld with a multinational chemical corporation and still call it science? Doesn’t industry money poison the well and create a corrosive competing interest? Would you trust a doctor being paid by a chemical company to be objective in your medical treatment? Imagine if other pioneering doctors in the field of chemical injury such as Heuser, Kilburn, Rea, Ziem, accepted industry fees, bonuses and alliances? It would be unimaginable, and absolutely rejected as unacceptable by us.

If Cullen had only made more noble career choices the term MCS might now be a positive moniker for the chemically injured community. But that’s not the path he chose, and whether intentional or not, his actions have surely poisoned the well for MCS. A fact which has not escaped the notice of his wealthy benefactor Alcoa; a company that rakes in nearly One Billion dollars annually in profits, is responsible for a multitude of American Superfund sites, and unabashedly funds 25% of Dr. Cullen’s salary, plus an annual bonus as personal income.

Largely because of Cullen’s erroneous conclusions, MCS is still not considered an injury, or a disease, and thus receives no federal funding for research and treatment. MCS is recognized under the ADA, but it is nebulous recognition at best that must be proven on a case by case basis. Simply put, there is a decades long battle being waged about the definition of MCS and we have been on the losing end of the war since the inception of the phrase MCS.

Dr. Grace Ziem, a well respected physician recently wrote a very compelling opinion piece in April’s, Our Toxic Times, titled, Alternative Diagnosis More Appropriate for MCS. In part, this is what she stated, “While the term “MCS” is easy to remember, it was developed without adequate medical evaluation. Also, scientific advances confirm that medically recognized diagnoses can be documented in chemically injured patients. There is no longer a need to fight for recognition of a term that is not appropriate when there are good ways of documenting toxic encephalopathy and other already well accepted forms of chemical injury.”

Let’s use the existing science and widely accepted medical diseases caused by chemical injury and let Cullen have his acronym. Twenty long years of a raging battle fighting for recognition of a condition, not an injury, named by a doctor who has become our worst enemy and where are we? Nowhere.