I have dyspraxia. Psychologists thought it was a driving phobia when it was a realistic desire to not kill myself or others with my lack of whole body coordination. As my paramedic friend says, “We are all grateful you do not drive.” (Dyspraxia is a lack of coordination, a sort of physical version of dyslexia. The young actor who plays Harry Potter has dyspraxia, bringing to the public’s attention at least in the UK. Where is our MCS celebrity?) Since I have dyspraxia I do not have much to offer about automotive problems, having always been a happy public transportation gal. (This has ended.) However I have been a passenger my whole life! By observing I learned a lot.
Come prepared. Always have a copy of that letter from your doctor about your needs as someone with MCS in the car, not just on your person, in all your medical files and at the ready to fax to a specialist. If ink is a problem for you, paperwork like that letter and registration can be kept in a metal box, not stinking up the glove compartment. Mom uses a lunch box a parishioner gave her of the Last Supper. I use a lunch box of the band the Ramones. Here is one of the few times you get to have fun accessorizing.
I also travel with snacks and lots of fluids. MCS means hauling a lot of things about, as if you have a baby. Purified water in a safe metal bottle, snacks galore, and tissues. Mask, too, of course. (I think a cottage industry of waist purse mask holders would do well. Canary clothing tends to be boring.) Going to the Bathroom As public restrooms are usually off limits (especially at a gas station) I made a car bathroom. It is really a funnel for when women squat and urinate nothing gets on our clothing or body, with a roll of 7th Generation toilet paper. If you live in the boondocks this makes the “find a rarely traveled dirt road and pull over to pee” problem a bit easier. We cannot use hand sanitizer after that, at a doctor’s office or before snacking, so I mixed Dr Bronners soap with water in a glass bottle, filled a huge glass screw top jug with pure water, and added a roll of 7th Generation paper towels. Now I can wash up in parking lots.
Prevent Exposure. Stainless garbage cans with lids are our way of keeping exposure to a minimum and protect the car when having to transport anything dangerous. Do not pump your gas and make sure that whoever does, knows not to get any on the vehicle. Have a trusted nontoxic friend take your vehicle in for oil changes. My Mom’s mechanic shop photocopied the pages from Multiple Chemical Sensitivity: A Survival Guide by Pamela Reed Gibson about car care. The endless cleaning of the vehicle and an air purifier still left us needing our masks when driving through the summer’s never ending road work and the state’s nonstop tourism industry. Hot tar, diesel machines and waits with cars idling their engines makes us sick and in the backwoods of Vermont’s Northeast Kingdom, all roads are main roads.
Drive Safe. Having seen my mother lose her memory about where we were going and seem to fade off when driving when we were being chemically poisoned and did not know it terrified me. I did not want to drive with her. I also thought she had Alzheimer’s! Do not drive when intoxicated. When you can find a safe place, pull over to rest, eat or drink something, and if necessary call someone to come get you.
Bicycling: I have heard that some Canaries ride bicycles. Due to dyspraxia, I could not figure out the basics of cycling, which was embarrassing since I was testing intellectually as at least 9th grade level in 4th grade. If I could ride a bike, I don’t think I would, even here in the middle of nowhere. Farmers using pesticides (not so much a problem with the dairy farms, though), diesel farm machines, people burning their trash in their front yard, diesel trucks going from Montreal to Boston and back, a lot of drunk drivers, people painting their homes, lawn mowers, ATVs, endless roofing, large groups of cycling tours that do not understand the road laws and think VT is their playground, people dependent on propane heat and wood stoves, and constant roadwork toxins – I cannot be around that when my heart isn’t being taxed. With my mask on I still cannot go into my yard safely and I live in a town of 1,000 where the nearest metropolis is 6,000. Yet some Canaries can handle a bike when wearing their mask.
Bicycling is a huge political and social movement of its own, so if you use a bicycle and are lonely or bored, that is a community to visit. I have known and loved a few bike messengers and a few hardcore cyclist advocates. I have been quite impressed personally by the DIO (Do It Ourselves) attitude in Toronto that has produced amazing programs like getting broken bikes and spare parts and teaching socio-economic disadvantaged kids to build their own bike which they then get to keep. Visiting a Dutch college friend in her hometown of Amsterdam, I was baffled as to how to cross the road with the thousands of persons on bicycles and not be knocked down, and yet she and the rest of the pedestrians could. (I think it just takes getting used to, like having to look in the opposite direction when crossing the road in England or the USA depending on your cultural norm.) Please wear your helmet. There SHOULD a bike lane and there SHOULD be fossil fuel drivers who respect them, but there usually are not. If you don’t have a TBI already, you don’t want one now.
If All Else Fails: What about those of us who get free Medicare rides to doctors’ appointments but the Medicaid cars and vans are not ADA compliant and make us sick? Or if you must take a taxi or bus? Or are just getting a ride from a friend? If you must ride in a MCS unsafe vehicle, wear your mask or respirator and cover your hair and clothing with something you can stick into a sealed plastic bag before and after. This can help you from getting the toxins in you and brought into your home.
Public Transit and Americans with Disabilities Act: I got used to taking Medicaid rides to doctor appointments. I cannot now. Burlington Vermont’s SSTA which receives lots of government funding allows drivers as “independent contractors” to hang those sickening pine trees from their rear-view mirror and wear perfume and clean their car with whatever poison they desire. This is of course illegal because it makes a public service inaccessible for persons disabled by MCS. If an organization receives government funding it has to be ADA compliant. MCS/Environmental Illness is a disability and SSTA is not assessable to me even though it is provided to me by Medicaid as my free medical transportation because I am on disability. (I single out SSTA because it’s common for all ADA transportation to not be ADA compliant for Canaries, I had a long conversation with them about this where I was basically told “tough toenails, then you cannot see your doctors,” and people often think Vermont is some paradise of social services and progressive society. It is not.)
The Americans with Disabilities Act is only enforced if enough people speak out about violations and you find dozens each time you leave the house once you are disabled. This is why disabled people are often so political. We cannot afford not to be. No one thinks of our needs unless we demand that they do. If you don’t make sure the ADA is enforced it won’t be. Lack of safe transportation means that Canaries are even more invisible in the community than those with other disabilities. If people do not have to consider the needs of any disabled people, they won’t because they do not think about it. No one sees persons using wheelchairs at a community meeting on the third floor because no one in a wheelchair can get to a community meeting on the third floor.