I told my friend Jennifer Silverman, a serious autism activist and one of the editors/contributors of the book “My Baby Rides the Short Bus”, that I felt I had been drafted into disability activism against my will. She said she totally understood. When we met working at a comic book company in Seattle in 1995, we had no idea what we’d be drafted into doing to make sure we and our loved ones are safe; things that would help to change the world. Neither of us, as politically active and aware as we were, would have even thought much about the oppression of the differently-able back then. Now she’s teaching inner city parents to make asthma and autism safe cleaning supplies and touring bookstores and college campus, refusing to speak where there is not wheel chair ramps. And you know me already. Like any oppressed minority, you are drafted into advocacy work because no one else cares.
Being poor and/or differently-able makes you an easy target for bullying as people see you as powerless, isolated, afraid, marginalized and/or ignorant about how to get your rights. Sadly many Canaries are waiting to be saved. No oppressed group has ever had their freedom handed to them. Why these persons suffering with MCS are not part of the Disability Rights Movement baffles me. Some of these people don’t even want positive change to happen as they have already decided nothing can be done! Internalized able-ism has disabled people oppressing themselves and each other.
Activism can bring back a sense of power and purpose often lost when someone becomes differently-able, or the survivor of a trauma. One great problem for most disabled people is being left feeling worthless, as if our lives have no value because we do not make money. The loss of self esteem, identity and power can be eased by taking action and seeing how connected you are to the big picture. Many turn to activism to handle the pain and anger they feel.
Something I once did not know: The Americans with Disabilities Act has no one monitoring and enforcing it. We still have many, many illegal barriers for differently-able persons that go against the ADA. Unless they are reported by enough people, nothing changes. Often you need a lawyer to force places to obey the law. Able-ism, discrimination against the differently-able, is rampant. Medicaid and ADA rides are not assessable for persons with MCS, yet they are funded with tax dollars, and so break the ADA law. When I lived in the Kingston, NY, area, half the polling stations that were to be wheelchair assessable were not because people had blocked the ramps or entrances or disabled parking spots with things like giant flower pots. Most (if not all) housing for disabled people is not safe for Canaries, so it is discrimination and a barrier to assess to something funded by the government. These things are illegal. I’d personally rather fight to get my Medicaid ride to the doctor than battle a yoga studio to choose to become fragrance free* – but that is my choice. I want safe yoga too! No matter who you educate, you are helping everyone.
Don’t be tricked into guilt for having “special needs.” Others have a special need to poison the planet. I have no special need. I need to breathe clean air. Who does not need that? No one. We with MCS are with the 100% majority of all that lives. Toxic poisons are the “special needs” deviation that infringe on your rights. Always remember that. Your need to breathe is more important than anyone else’s desire to use hair spray, aftershave, or fabric softener or any businesses desire to use pesticides, carpet, particle board or toxic air fresheners. Everyone who is ill and all of nature is on your side, no matter how threatened some people are by your illness’s hard truths. In theory they may support nontoxic living and yet take it personally that you need them to act on that belief.
Having MCS makes you dangerous to business as usual. This is one reason there is such resistance to admitting what we have is very real. Our “cure” means the end of the unregulated rampant abuses of Chemical and Industrial Age. Think of how much money the tobacco industry spent on lobbyists to own the political votes and buying doctors and twisting studies and lying to the public to make money. Think of how many years it took and how hopeless it must have seen to those dying of second hand smoke exposure lung cancer and raising children with health issues directly related to pregnant woman being told it is fine to smoke and the betrayal of the people who smoked because ads in mainstream magazines had 1950s starlets and doctors in full page ads encouraging a cigarette to calm the nerves. When I explain MCS’s huge political battle in these terms other people understand. Luckily (and sadly) we live in a time when very few people trust the government, medical system, or corporations to be looking out for us.
One of the best ways to handle my anger about how this has changed my life so drastically is to be an advocate. I feel better when I email a “community” event and explain how exclusive their community is as it has no ramp, is not on a bus route and the building is cleaned with poisons. I also tell them HOW to make their event inclusive. Most people do not think about this. Is your home wheelchair assessable? Unless you use a wheelchair or have a loved one who does, you probably don’t know. Ignorance is not rudeness or bigotry. But when people are educated and just do not care, are lazy or angry about “special needs,” then I have a very serious problem with them. Community has to include everyone.
The demographic most willing to change their toxic ways are the pregnancy and parent groups who want to have safe, healthy children. Obviously many Canaries become environmental activists, as our illness is environmental by nature. Social Security calls it Environmental Illness (EI) when I would call it “Destroying a Planet with Toxic Poison for Greed Illness,” but why split hairs? What is safe for us is safe for the planet. What harms us harms the planet. Many of us feel the direct link to the environmental crises of this time and our illness and/or between the poisoned planet and our bodies. If the poisons that harm Canaries were banned, other illnesses would be less common as well.
Links to poverty and poisoned land are well documented, turning some Canaries into environmental justice advocates. As poverty is often linked to issues such as sexism and racism, it is easy for a Canary to find oneself with a world of potential allies (if we could leave the house and had safe enough housing to think clearly). However, many potential allies may not have heard of MCS. If you educate them about MCS and the common ground between MCS and their cause, we build stronger alliances. Sick Building Syndrome is a massive problem for schools and hospitals and Canaries have been leading the battle to make them safe for children, office staff, teachers, nurses, food staff, doctors, patients, cleaning staff, etc. Many studies have proven the links between Sick School Buildings and both illnesses and learning disorders in students and teachers. See the Resources page for links. Some Canaries give presentations to others about MCS, write articles, and create MCS awareness events. Educating hospital staff is vitally important. Demanding that the ADA be followed by the social and medical services for which we are eligible is a must.
A rule my Mom has about activism is to put the majority of your energy into creating and supporting what you are for, not only fighting what you are against. The former makes you feel like you accomplished something. The latter makes you bitter and burnt out. Anger can ignite the desire for justice but it fades fast. Love has to be the main fuel for activism. If you are not being emotionally nourished you need to stop and revise. “Go where the energy is,” Mom says. A group that does nothing will discourage you. Try another one.
I don’t just send letters and make calls about what politicians and others are doing wrong; I also congratulate them when they do something right. I call this “thank you note positive reinforcement activism.” Kind nurses, doctors and receptionists get cards. I ask for supervisors when someone on the phone has done a great job, and I write letters of thanks to social service organizations. The town library is a sort of community center and they home deliver books and DVDs to housebound individuals. My email thanking them for being aware of the needs of the differently-able was used in their grant proposal. The nurses at Fletcher Allen in Burlington VT were so great I sent them a letter about who helped me and why it was special which I mailed to their supervisor. (Being a nurse is a hard, insecure job in this financial climate.) People who are doing good jobs I want to encourage and also make sure they are rewarded at work so we do not lose them.
Being connected to the disability advocacy group in your area can help you have power in numbers, but be warned that paid staff are underfunded, understaffed, overworked and overwhelmed (and online trying to get another degree). Volunteers are often sick like you are. Due to this, you probably will have to volunteer to be the person in charge of your main goals to make sure someone is doing it. Whether it is setting up a support group for differently-able persons of all genders and sexual identities to discuss the abuse in their relationships or writing a factual ADA tenants right pamphlet or filing reports against a hospital, there is a lot to be done. Life is not fair, but humans can make their societies more just. No one has ever handed an oppressed group their freedom.
My 2 cents (That I Hope You Will Ignore if it Doesn’t Help You): One of my spiritual path’s great leaders told me that some of us are Gods-chosen to do important work we often don’t want to do, struggle against, and our lives only become sane again when we make peace with this. In his terms, we are the strong ones who are called on to sacrifice our personal lives for the greater good. My Mom who is an Episcopalian Priest taught in Bible Study about those who got The Call and how they tried to get out of it, how others treated them, and all the rest that followed. Any religious or political leader who is not a nutjob has told me about how they tried to get out of The Call. All of them advise that if you can, do, because it is not easy to have a life of service. In the end, no one ever finds they can reject The Call without much suffering. I think everyone has a calling, or is what I call drafted. The Call isn’t religious, as secular humanists often do much more than religious people. Everyone has a choice about how we respond to The Call to serve what is Healthy and Sane—and we have to use a lot of discernment to make sure we’re not just going off the deep end. Taoism has taught me to do nothing against nature. Hinduism has taught me to do my dharma. Quakers have taught me to never compromise my conscience. Buddhism has taught me to hold my beliefs lightly. Asatru has taught me that I am my own agent of change. Indigenous tribal cultures have taught me that life cannot exist without our focus being the common good. Catholic liberation theology has taught me that good people will die to for a just world. Judaism has taught me that being God’s Chosen People means you are held to a higher standard. Animism has taught me that life is nothing but right relationships. Proto-Indo-European Reconstructed religion taught me to follow my swartus in harmony with the Xartus. History has taught that me that cowards let evil win. Science has taught me that we are all connected and what I do does effect the whole. Living for 41 years has taught me that the end of the day I have to live with myself. I did not create this reality and I decide how I will respond in it, or as I tell my Tarot clients, “You don’t control the cards you are dealt but you decide how to play them.”