Another MCS advocate and I used to fantasize about someone internationally famous speaking out about MCS. Someone mainstream, maybe an actress from Sex & the City, who could grab the general public’s attention: that was our dream. Quotes from non-profit organizations and “only well-known in our circles” writers would not cut it. We needed an “in” to the American public.
Many MCS activist groups focus on seeking to create special government-funded disability housing and inevitably burn out. For an organization to last, it needs to focus on manageable, achievable goals so members do not feel hopeless or apathetic and lose momentum. Small successes keep people going, hold groups together, and can build into larger success.
Raising awareness about MCS first is important. One reason is housing: No one will help with a problem they don’t realize is really happening. People have to be as used to hearing about MCS as they are hearing about asthma before we can do more. We need to mainstream MCS awareness.
Bernie Sanders has given us a few quotations about the reality of MCS. I was shocked that during the last American presidential election no one used the popularity of Sanders to make memes about MCS. (A meme is an image and words that people post on social networking sites. At that time I did not have access to the necessary technology, and I do not have the energy for online social networking.)
One person who had severe MCS for decades told me, “MCS is not on his website’s political platform.” Ummm… That is not something the general American population considers an issue. I began to understand why MCS advocacy groups were failing. No saviour will rescue us, and we need to use our few resources wisely. Sanders is a resource and a lot of people with MCS can only have online friends. Low effort, high yield actionism – just what isolated, oppressed people often with chronic pain and fatigue need.
MCS got its celebrity. Sanders is not Sarah Jessica Parker, but people still recognize his name and face. He was on every major news program and in all the mainstream newspapers repeatedly. The point of memes with his picture and quote is not to promote Sanders. If Trump said MCS is real and matters, I would have his face and quote as a meme. The point is get people used to seeing MULTIPLE CHEMICAL SENSITIVITY.
Slowly, MCS is getting mainstream attention. Even common household cleaning product Bon Ami has a page about MCS on their website. (People with mild to moderate MCS kept writing the company, saying it was the only cleaning product they could find.) The disability community and our allies are much more aware that fragrance is an (illegal) barrier of access. MCS is sometimes a symptom of Chronic Fatigue Syndrome/M.E. and Lyme Disease – and mainstream medical websites often list it as one. More government offices and health clinics have signs saying “Fragrance Free Zone” and new mothers learn that chemical cleaning products can cause their child to develop asthma.
These memes are another reminder to the public that chemicals make people sick. Only a few reactions to the trigger of chemicals are mentioned, but “brain fog” and poor balance during an exposure are obvious to others and now they know why. People were not aware of the problems caused by food allergies, sensitivities and intolerances 10 years ago, and now there’s gluten-free, dairy-free versions of even junk food. Linking MCS with a newly mainstream health problem like food intolerance helps people put MCS in context. They might notice they or their child has these symptoms. If the person likes Bernie Sanders, they may just parrot what Sanders said to others at a party or at work if MCS is mentioned.
Because right now he is still famous. People on Facebook will stop long enough to see “Multiple Chemical Sensitivity” and the words will stick in the back of their mind. The next time they read or hear about MCS, their brain will file it with this, until eventually they will accept that MCS is part of reality. There’s lots of memes about the dangers of chemicals, but they don’t have a mainstream image and name to grab the general public’s attention.
Also, while anyone can make up anything online, but look at the U.S. Congressional Record, October 9, 1998, and you will find this by Bernie Sanders:
“Multiple Chemical Sensitivity or MCS is a chronic condition marked by heightened sensitivity to multiple different chemicals and other irritants at or below previously tolerated levels of exposure. Sensitivity to odors is often accompanied by food and drug intolerance, sensitivity to sunlight and other sensory abnormalities, such as hypersensitivity to touch, heat and/or cold, and loud noises. MCS is often accompanied by impaired balance, memory and concentration.”
A MCS activist asked me if I got Sanders to do that. When I recovered from the surprise that anyone thinks I have that much power, I explained. No, Sanders headed the committee on Gulf War Syndrome, and he has supported people with MCS since then. However, the naivety of the well-meaning activist really helped me understand why MCS activism has stalled. People with MCS need to learn more about successful advocacy, and that is something in which I was trained and now must do to literally stay alive. I will share some of those skills here, along with other information about living better with MCS/MCAS (Mast Cell Activation Syndrome). From health care information to making your home MCS safer, from living organic on a budget to MCS safe activities, I hope to offer what I have learned and provide support.
Living with MCS is hard, but it can also give your life a deeper meaning and a greater purpose. MCS help us help change our species to saner ways of living. We need to share what we know with each other, create toolboxes for emotional sustainability, and build bridges to other disenfranchised populations who share common concerns.
We are not alone. Our “special needs” are fresh air, safe food and clean water. We are the vast majority of life.