Vermont does recognize MCS as a disability covered under the Americans with Disabilities Act, although few social workers or doctors know this. (Please note that in my experience very few VT social workers know what the ADA even is!) Former Presidential candidate Bernie Sanders (when a Congressman) read the following remarks regarding Multiple Chemical Sensitivity (MCS) into the Congressional Record on October 9, 1998:
“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.”
VT Governor James H Douglas proclaimed May 2010 Toxic Injury and Awareness Month in Vermont. http://mcs-america.org/Vermont2010TI.pdf VT Governor Peter Shumlin did the same for May 2011. http://www.mcs-america.org/vermont2011ti.pdf. If anyone bothered to ask we could probably have that every year.
When a VT Senator, Bernie Sanders said of the film “Multiple Chemical Sensitivity: How Chemical Exposures May Be Affecting Your Health,” “Your video does an excellent job in explaining current thinking about the causes of the problem and how it can be best addressed. I especially applaud your including in the production some of the most knowledgeable MCS experts in the country.”
Yet, shockingly, Vermont “the socialist paradise” state is far behind much of the USA with environmental medicine and MCS awareness. We must demand that our elected government walk their talk. (There’s not one environmental medicine practitioner in Vermont.)
To date, this is the only legal case about MCS in Vermont which I could find online–State of VT Human Services Board Fair Hearing No. 20,895–is the case of a women with MCS winning an appeal for Attendant Care Services Program: http://humanservices.vermont.gov/boards-committees/hsb/decisions/20001-t… This is important because it shows that persons with MCS are eligible for Choices for Care by Medicaid. I have it for MCAS and my work along with others has set the legal precedent; Choices for Care Long Term Medicaid MUST work with you to find a reasonable way to accommodate your needs. (See below.)
Possible Help in Vermont
As there is no VT MCS community, getting information from others has been hard. We’re an impoverished, rural state. ADA transportation is impossible with MCS (that’s actually illegal under the ADA’s own rules!) so people can’t meet. If you find anything local please contact the webmaster.
Vermont Department of Disability, Aging and Independent Living (DAIL): This is the state agency, newly renamed. http://dail.vermont.gov/ The website has no phone number. Vermont has a very large elderly population so funding and focus is for them.
Medical People That Persons with MCS Suggested
PCP (primary care physician)
Tina D’Amato DO, Charlotte Family Health Center, 802-425-2781, http://www.charlottefamilyhealth.com/about_us.html A generalist with patients with MCS, MCAS, chronic Lyme, Gulf War Syndrome and other “weird” chronic illnesses. She doesn’t specifically treat MCS but if you need a doctor who can write prescriptions, manage your care and knows MCS is real, she can do that. She has several patients with Mast Cell Activation Syndrome, the cause of MCS for many people. She sometimes consults with lawyers for people with MCS and was the physician for the attempt to have a VT HEAL group, a national MCS organization, and paid for all the costs. As she has a lot of MCS patients and studied with a naturopath, she does understand and uses natural medicine. She’s my PCP. Does your blood work there if hospitals are too toxic and appointments are 40 minutes if you need that. She doesn’t write off all your problems to a chronic illness. If you have multiple diagnoses, she’s great. NEW BAD NEWS: Charlotte Family Health Center is EXTREMELY toxic and inflexible in regards to accommodations for people with MCS. There is a corner exam room where the two windows can be opened, and you’d enter from a side door into a highly toxic hallway (hold your breath!) and then get to the exam room on the right. This way you can avoid the waiting room. There’s alcohol products and ink among other MCAS triggers in the (sadly) best exam room. I couldn’t remember very much about my appointment except that there’s an apple tree outside. Dr D’Amato is not allowed to do phone or Skype appointments, even if you pay out of pocket, so there’s no way to have nontoxic, non-brain fog communication. She cannot even talk to you outside the building. Charlotte Family Health Center staff has no knowledge about MCS or MCAS. The only good thing is that the practice is not owned by a billing company. (Billing management companies usually own hundreds of practices, making doctors see a patient every 15 minutes or less, all in the name of quantity of money over quality of health care. Doctors hate them, but due to how the American health care system works, are normally trapped as employees of a BMC.) Unfortunately, if you are going to be dizzy, lose your short term memory, and have trouble with comprehension, a 2 minute or 30 minute appointment doesn’t matter. We can hope that Charlotte Family Health Center gets with the times and does telemedicine which was meant exactly for rural practices like their own, but it’s unlikely. Takes Medicaid.
Thauna Abrin ND, Hardwick, 802-472-9355, http://www.drthauna.com/07/sg.php?home The only doctor who knows how to treat MCS in Vermont. Originally a specialist for younger women’s endocrine troubles, she has MCS herself. She’s known for doing extensive blood work far beyond most NDs. Personally she helped me with MCS, PMDD, and copper toxicity. Her patients call her the “medical detective” and she does not give up. Keep in mind that she is a “one woman show” working with no help. Unfortunately there is no school for Naturopathic Nursing, although it is something we desperately need. Hence, she’s doing everything from billing to contacting pharmacies on top of seeing patients! Sadly for those of us with mobility issues, her office is on a second floor with stairs only, which excludes many people including myself. Once you have established care, she may do phone appointments if you pay out of pocket. Note: As she processes by talking outloud, appointments can be confusing. She often mentions a treatment and begins instructions but then looks up something else, which makes note taking difficult. This is the advice I give people who have problems with her outloud verbal processing: Before the time ends ask for specific directions of what your treatment plan is and write it down. Read it back to her. If she changes something upon hearing that, again read everything back to her. She is an auditory learner. Takes Medicaid.
Katharine Guaraldi ND, Stowe Natural Family Wellness, 802-253-2340. She met a patient with MCS in the parking lot. She at least know that MCS exists, but the former patient says she wasn’t helped at all with her MCS.
Lyme Disease and MCS In 2015 Vermont was the leading state for the Lyme epidemic and Lyme often causes MCS. 2017: The Lyme epidemic grows as more people diagnosed with fibromyalgia or chronic fatigue syndrome are getting the only accurate Lyme test, by iGenex, which only Medicare covers. The test finds the co-infections that are actually worse than Lyme. Vermont is having tickbourne diseases it “shouldn’t have” and 50% of ticks in Vermont tested had Lyme and/or another disease. Mast Cell Activation Syndrome is often the trigger for MCS if you get Lyme. 2018: Mercy Diagnostics now provides the same tests as iGenex, but for much less, most insurance covers it and the turnaround time for your results is only a week or less!!! This is huge news! iGenex costs $800 while Mercy Labs may cost only $20. It’s the break through we have needed because it is important to understand that MCAS often feels like Lyme disease, especially after a round of heavy antibiotics. Unless we can afford to test for Lyme, we won’t know if it’s still Lyme disease or MCAS. To use Mercy Labs you need to have your blood drawn at a Mercy Labs drawing center – usually a Naturopathic Doctor Office or Dr. D’Amato’s office. This gives you more control over what is wiped on your arm before blood is drawn, a major concern for anyone with MCS or MCAS. The Mercy Diagnostics website should provide you with information about where your nearest drawing centers are.
One way is to have it done by 23andme for $99 (Aug 2018) at http://www.23andme.com. It is suggested you use a fake name and date of birth due to eugenics. “The Personal Genome Service isn’t primarily intended to be a medical device. It is a mechanism meant to be a front end for a massive information-gathering operation against an unwitting public.” Scientific American
Many Naturopathic Doctors are now studying this, so check with a local ND if you want. It helped me greatly.
Dr. Karen Threkel ND in Washington DC 202-244-6661 does this analysis over the phone. You’ll have to see if your insurance will cover any of the appointment. There’s a $250 90 minute intake appointment and then another $80 appointment about the DNA results. She emails reports to you and your doctor.
Genova Metabolic Functioning Test
A doctor can order this urine test for you. It gives a “snapshot” of how you are functioning right then. Unlike genetic testing, this test changes a lot depending on the absorption of vitamins and minerals, different enzyme levels, fungi or bacteria build up, heavy metals, mitochondria, etc. From that one urine test a good doctor can tell what supplements you need. It’s $325. Dr Thauna Abrin can suggest what you need. However any decent ND should be able to do this. (If some results seem off, make sure to follow up with blood tests.)
WARNING: Sojourners Center near White River Junction has told me that the owner expressly stated that they are not equipped to work with persons who have MCS. There’s mold and a lot of fragrance. The practitioners I have seen were completely inept when it came to MCS and another Vermont Canary said they provided no help.
Eastern States Compounding Pharmacy, Littleton, NH, 800-964-0094, http://easternstatescompounding.com/ Due to sensitivities many medications I need are impossible for me to take. Eastern States does both prescription and over the counter drugs, but with the ingredients tailored specifically for each patient. Both Dr D’Amato and Dr Abrin have used them for various RX treatments I and other patients needed. Eastern States is used by people across the US. The staff and owner are all very aware of the failures of “one size fits all” McMedicine, often due to their own struggles. They mail medication or you may pick it up. They’ll meet you in the parking lot so you won’t have an exposure in their lab. Note: VT Medicaid keeps changing their rules about what they’ll cover made by a compounding pharmacy. Currently (2018), if VT Medicaid no longer paying for ANY medicine.
If you can schedule with a clinic nowhere near cleaning time, not have patients before you, have windows open (no car exhaust from outside, so not open to parking lot), explain in detail no fragrance, gum, mouthwash, nails or hair recently done for staff helping you, bring fans, an air purifier and protect your clothing with a Tyvek suit maybe it’ll work. Finding a way to rig your ceramic oxygen mask to cover your nose would help. I’ve been told to ask that they use Valium and local anesthetic and not use nitrous oxide, as nitrous oxide seems to be dangerously involved with MCS. But then the dentist worries about a lawsuit and refuses to see me. In general dentists are afraid of taking patients with MCS, so do everything you can to take care of your teeth. People with MCS sometimes pay for the popular $300 Clifford dental test done to check for best filling materials. (Dr. Abrin or another doctor or dentist can order the test for you as well.)
Dr Liscio, Colchester, 802-658-4873, http://www.lisciodental.com/ His own journey led to his cure of MCS by having all his teeth pulled on the advice of a psychic medical intuitive. This does not help most Canaries. His air is purified every 20 minutes and it was an amazingly safe office, but they now use aromatherapy, which is toxic for most people with moderate to severe MCS. He is expensive with no payment plans or sliding scale – For me to have a dead tooth just extracted would cost over $700. He did plan to use nitrous oxide, which for those with impaired methylation detoxification pathways (many people with MCS) is very dangerous. His understanding of MCS is not very good.
Brigham Dental Care (low income dental), Morrisville, 802-888-5685. Dr Abrin is able to go here. Elise cleans her teeth. Hard wood floors. Call ahead about the soap in bathroom and ask for it to be fragrance free, as that was her main problem. Someone as sensitive as me would not be able to go there.
Therapists That Persons with MCS Suggested
Unitarian Universalist Rev Laelia Tawnamaia, InterSpiritual Minister of Honoring the Heart – Has MCS. North/Central Vermont, also Skypes. She provides non-denominational (including Buddhist and Pagan) pastoral counseling with a personal awareness of how hard living with MCS is. Wonderful for deep listening and compassion. Unfortunately she cannot take insurance. http://honoringtheheart.wordpress.com/
Lucy McKee, Northern Kingdom Human Services, St Johnsbury, believes her patient that MCS (and ink intolerance) is real and was very effective in helping her with other issues using evidence-based therapies – ones proven to work for most people like CBT, DBT, etc. She’s an addiction counsellor like most mental health providers in Vermont. Her private practice office has become safer, but there are stairs. (Moderate MCS sufferer wears a mask which works for her.) She will call in advance to cancel if the last patient filled the room with fragrance for your protection. She does a walking appointment with one MCS sufferer. 2018: Educating other therapists about MCS. We need more therapists like her!
Dr Joe Lasek, Psychiatrist. Works out of Burlington’s horrid Community Health Center and at the Howard Center. Organized the 2018 Mast Cell Activation Syndrome conference at University of Vermont. He may know of other mental health care providers who attended the conference. He may not know much about MCS. He is committed to helping people get off unnecessary medication and is the most caring psychiatrist I’ve met. As he knows about MCAS, he should know about medication sensitivities and allergies, and help you find which generic version works for you (every pharmacy carries different manufacturers) or have Eastern States Compounding Pharmacy tailor make a version for you. Unfortunately the Howard Center is very toxic. He knows that MCAS causes brain fog and mood swings, but doesn’t work anywhere that will not trigger them. At the Community Health Center I think he may just oversee the work of a Nurse Practitioner and rarely interacts with patients.
Carol Westinghouse, 802-626-8643, East Burke. In the 1990s Ms Westinghouse was the MCS contact person. With her own non-profit Informed Green Solutions Inc, she mainly gives presentations to schools and Head Start/day cares about nontoxic safety issues for children, but is available for other groups. Her amazing work also includes changing VT legislation about what cleaning supplies are legal in schools. She is quite happy to give talks and provide information. (Note: Her email address no longer works. Perhaps she’s closed her company but forgot to take down the website.) http://www.informedgreensolutions.org/
Agencies That Have Already Accommodated Persons with MCS
Choices for Care Medicaid Long Term Care http://www.ddas.vermont.gov/ddas-programs/programs-cfc/programs-cfc-defa…
Chittenden County VNA (Leslie Parker) and Caledonia Home Health (Pat McNichols) and Northeast Kingdom VNA (Julie Bigelo) have provided services to persons with MCS. However, I find it much better for someone with MCS to choose the Flexible Choice program, managed by Transitions II, of Choices for Care Medicaid Long Term Care. This program provides some financial assistance with home help attendants for shopping, cleaning, cooking, bathing, etc. If you have a family member or friend already doing this, you could hire them.
I am in this program due to MCS. I fought hard for that against my Caledonia Home Health Care lazy case manager, who repeatedly hung up on me. The state said I qualified for the program and she said there was no way to work with me. I had to threaten legal action to make them do their jobs. One 22 page document about how if they didn’t work with me to find solutions they’d lose their funding because they’d be breaking the Americans with Disabilities Act and hey, she pretended to like me and took my calls! I never trusted her after that with good reason.
The precedent has been set so all Choices for Care Medicaid agencies in Vermont have no excuse – It is your right to be accommodated. Chittenden County hired a person who is fragrance free and Calendonia Home Health Care had staff wear the Tyvek suits Dupont 1414 which they bought.
Personally I think the Flexible Choice (managed by Transitions II) of Choices for Care version suits those with MCS better. The director Michelle Brennan knows about MCS and MCAS because of me and the nurse, Tracey, who does my evaluations is incredibly respectful about MCS. This version of the program also allows you do spend some of your budget on medical supplies like air purifiers, medical testing, and (currently) supplements. Also, because I can’t have a printer due to ink intolerance, they print my receipts from companies who don’t mail them, only email them. That’s quality service! It’s also an example of how easy it could be for ANY agency to accommodate someone with MCS/MCAS.
Remember: If an organization receives government funding they must follow the Americans with Disabilities Act. Sensitivities and intolerances are NOT the same as allergies. Allergies are not considered a disability. Sensitivities and intolerances are! Most expect you to not know your rights – most don’t even know what the ADA is! Use it like a battering ram to get access to your rights!
http://www.ddas.vermont.gov/ddas-programs/programs-cfc/programs-cfc-addl… (If link doesn’t work, use the above Choices for Care general link.)
The Choices for Care program decides if you require home health with shopping, cleaning and personal care and then pays for it. To make the money go around, even if you qualify for 6 hours help a week, you will receive only 2. (So don’t get excited when you get a letter from Medicaid saying 6 hours.) If your needs are deemed more serious, you get more hours. At the least the person can do errands for you, going to toxic places like the post office, grocery store and pharmacy.
Although they try to accommodate persons with MCS most of the people who clean, shop, cook etc smoke or reek of perfume. If your program allows you to find your own employees (like Transitions II), finding a nontoxic home health aid is hard – We hang flyers at farmer’s markets, co-ops, solar shops, etc. There are many persons with mild MCS who need work. Those who by choice live chemical free (making their own skin lotion and toothpaste like we do) take a shower at my home and wear organic clothing I provide and wash. We’ve had some luck with aides who don’t use make up, fabric softener or perfume wearing Tyvek suits. (See Resources.) Bald men due to the lack of shampoo are usually less toxic. If you have any medications that may stolen for recreational use, put in a lock box.
Rural Edge formerly Gilman housing – Low income and disability housing for the Northeast Kingdom.
There are very few non-smoking unit available, which is rather shocking for disability housing. Think of the people with cancer, asthma, etc! They have dealt with at three persons with severe MCS. They will buy Denny Foil, Shur Tape, use no VOC paints and make other accommodations and modifications where they can. If they can do this then all other government funded agencies have no excuse and could lose funding for violating the ADA.
Dr Grace Ziem’s website has a list of MCS reasonable accommodations and modifications in case an agency asks. Dr Abrin is well known for working with her patients and agencies to get MCS needs met.
Organizations That Have Worked with VT Canaries
Please note: Not all employees/volunteers will know about MCS.
CFIDS VT – Rik is knowledgeable about MCS. He made a great film about CFIDS/ME in Vermont. Their website hosts downloadable MCS educational aides by Ishana Ingerman, the last Vermont MCS point person until burn out led to me being unexpectedly thrust into this role. (The group seems to be inactive.) http://www.vtcfids.org/
Brain Injury Association of Vermont – Many chemical injuries cause brain damage. Much of what helps persons with TBIs applies to those with “brain fog.” Main employee Barb is very well networked and extremely caring even if she cannot help. I’ve received more netwoking help from Barb than everyone else combined. Contact them for resources. http://www.biavt.org/ 1-877-856-1772
Vermont Center for Independent Living – 800-639-1522. http://www.vcil.org/ Traditionally CILs and persons with MCS have very different goals. CILs want to help disabled persons participate more in the mainstream while those with MCS are looking for safety from the mainstream. I have yet to hear of a CIL that is even fragrance free. However, sometimes VCIL has funds for helping people buy adaptive technology. Two persons with MCS I know had air purifiers bought for them, one paying 20% of the total cost. The funds traditionally come in October. The funds run out fast!
Hiring Home Health Care, Personal Care
RewardingWork.org Call Vermont Center of Independent Living for the access code. 800-639-1522. You can view people searching for work. There’s a box they check if they will use unscented products. Email them what that means for you, and it’s really fragrance free. Unscented means chemicals mask the fragrance.
Community College of Vermont http://ccv.edu/find/ If you have a flyer about what you need from a home care provider, your local campus will hand it in the library/lounge. Nurses, LNAs, etc go there for continuing education and certification training programs. Many need more work as their hours get cut at hospitals.
Places of Worship
Episcopal St Peters Lyndonville. Until recently had a Priest with moderate MCS who at times attended in the back row wearing her mask. They put in new air purification, but it’s still difficult. A Priest brings Communion to the house of someone with moderate MCS.
Unitarian Universalist Burlington. They have begun educating people about fragrance. Last I heard they were hanging signs that the church was fragrance free and why.
Unitarian Universalist Rev Laelia Tawnamaia, InterSpiritual Minister of Honoring the Heart – Has MCS. North/Central Vermont, also Skypes. She provides non-denominational (Buddhism, Pagan and more than Christian) pastoral counseling with a personal awareness of how hard living with MCS is. Wonderful for deep listening and compassion. Unfortunately she cannot take insurance. http://honoringtheheart.wordpress.com/
Business aware of MCS customer’s needs
Purple Shutter Herbs, Winooski, 888-865-HERB, http://www.purpleshutter.com. Bulk herbs and herbal products. Fletcher Free Library, Burlington.
Wisdom of the Herbs School East Calais, VT, 802-456-8122. The teacher is well informed about MCS and EHS.
North Country Tech Services, Littleton, NH, 603-575-5074. They built me the only computer that I have been able to use since getting MCS so severely. They are very aware of the fact that they cannot wash anything and that heated up plastic is definitely problematic as are the pesticides sprayed on imported electronics. Fantastically reasonable prices and the best customer service I’ve ever experienced. Recommended for anyone with any kind of special needs. – Heather
Classic Auto Exchange – 891 U.S. 2 Berlin, VT 05602 802-223-7501
“We spoke with both Ron and Mike. We dealt more with Mike, in charge of the garage. Ron is the office guy. The owner/boss doesn’t appear to work there. Ron was respectful and helpful–bringing me the info outside rather than asking me in the office with no windows but directly open to the very stinky garage. The asphalt surface was terrible when the sun was on it, the garage smell is one of the worst I’ve smelled, and the vehicle smells from Rte. 2 are also bad. We tried for early Sat. morn when garage door was closed and sky overcast and before a lot of traffic, but still not great. Mike knows folks with all sorts of allergies & sensitivities. He was also respectful. At this point apparently they don’t automatically clean the inside of vehicles unless they smell bad–usually dog smells (which I would have probably preferred!). So some smell worse than others.” – Vermonter with severe MCS
No one admits they discriminated, so you need witnesses, written statements, recordings of VM and conversations and/or photographs.
Disability Rights Vermont, (Formerly known as VT Disability Protection and Advocacy.) http://www.disabilityrightsvt.org/ 1-800-834-7890 or 802-229-1355. They can help you find resources. I used them twice and once they sent me to Human Rights Commission and another time gave me a website for finding a social worker which didn’t help.
Vermont Human Rights Commission http://hrc.vermont.gov/ 800-416-2010 (voice) 802-828-2481 (fax) 877-294-9200 (TTY) Health Care Advocacy’s Vermont Legal Aid program 1-800-917-7787 (Formerly known has Omsbudman; the part that handles Choices for Care is still known as Omsbudman.) This independent organization helped me with this Medicaid problem: Medicaid will not pay for counseling over the phone but my ADA recognized disability of MCS means I cannot leave my room or have anyone visit. Medicaid is not meeting my ‘special needs.’ For legal help with health care issues, contact them and they send you to a lawyer at Legal Aid.
Vermont Legal Aid 800-747-5022
The few people I know with children who have MCS home school and usually have to do it completely alone, without the help of other homeschoolers. I wish there was a resource for parents with MCS in VT. Carol Westinghouse (above, under educators) works fulltime educating schools and day cares, yet she knows of no parents’ group against toxic environments. Maybe the American parenting groups on the Resources page will have ideas and support.
I have seen that sometimes children on organic farms often are safe playmates for children with moderate MCS. Check at farmers markets if any know about MCS. Children with Lyme often have MCS. Also children with other “special needs” who are alienated may have parents more open minded who will help your children have playdates. I’ve seen that. I have heard there are local, online “mindful parenting” groups but am not sure what they are. Flyers at the local co-op, health food store, naturopathic center, farmer’s market, solar sustainability supplies shop, etc. may connect you with supportive parents, friends for your child and perhaps a homeschool team. As always in Vermont, be prepared to drive a long distance. I grew up in a small Vermont town and the nearest pediatrist was almost an hour away! Hence I had terrible health care.
If you have MCS, the way you live will help any of your children who may develop MCS, asthma, autism, etc., perhaps even preventing those problems. Pregnant women and homes with small children are being told by mainstream doctors to live as if they have mild MCS for the sake of the child. If your children see you advocating for yourself and their needs, they will learn how to advocate for themselves. MCS does appear to have a genetic component.
Easy Activism You Can Do in Vermont
There are signs and brochures about MCS and fragrance on the Resources page that you can download. If you remember when you go out (brain fog) or have real friends, supportive family or hired help, ask them put the brochures in co-ops, farmer’s markets, smart doctor’s offices, church/temple bulletin boards, parenting groups, libraries, town meetings, community centers, other chronic illness support groups, and ask people to display them at their booths at Green Expos and Natural Health Expos etc. By connecting with allies of nontoxic living and disability rights, we can mutually support each other and have strength in numbers.
If you like me are ink intolerant, you can have someone else make the copies and fold them, or go outside and with mask on to fold them, and keep them in a metal cashier’s box or small tool chest or several older off gas freezer bags. Also you can often email the pdfs to a large copy center like Kinko’s or Montpelier’s own Capitol Copy and they will mail them back, already folded. Sometimes a local business will donate $20 to have their business card be on the brochure if their products or goals match our issues, like home schooling supply stores, eco-salons, health food stores, organic farms, wellness centers, etc. With a few sponsors you can make hundreds of brochures.
If we do not do this no one will. No one has ever handed an oppressed minority their freedom and rights. Ask your church, support group, chiropractor, peace and justice center, yoga studio, meditation center, community centers, afterschool programs, town meetings, co-op, and anywhere else you wish you could attend to become fragrance free and hang a sign on their doors and post that information on their website and literature. It is very common practice in other regions of the US already for the safety of staff and customers. The more people see the letters MCS the easier life may be for us someday.
Email or phone “community events” to explain that you would have spent $300 on their weekend workshop but they allow neuro-toxic substances and endocrine disrupters in their room. Many parents are concerned about their children’s exposures to toxic substances. This is a group that is happy to learn about how to live a non toxic life – and as cheaply as possible. We can fill that need. This is a huge potential alliance.
The History of the Vermont Canaries
For a brief time, the Vermont Canaries were an active group, led by Ishana Ingerman. One meeting included John Berino who is the Manager of Occupational and Environmental Health at Fletcher Allen Hospital. President Ingerman worked to make Fletcher Free Library in Burlington fragrance free. This webiste is a result of that group, in a strange way. They asked me in month 2 of my diagnosis to run for president which was a bad sign that any enthusiasm the group had was gone. (Very common with any chronic illness organization, especially if they start with too grand of plans and see no results.) I wrote a formal proposal to create their website, which they rejected and told me what they wanted instead. What they wanted was exactly what my proposal was, but none of them had even read the asked-for proposal. The group disbanded soon after and I built this.
I learned from Carol Westinghouse that there was an earlier group that disbanded for the same reasons: Where can we safety meet? How can we safely attend? Who will be well enough to lead? Ms Ingerman had a chance for speaking on the news but there was nowhere safe for her to be filmed. Leaders burn out and if there are no other members invested in the success of the group, the group already fails. In hopes that one day there will be more interested, solid, supportive, active members, I have gathered what information I could about MCS and VT for future VT MCS groups, in whatever form they may take.
Please look under Social Skills and the Resources page for help on starting a sustainable support or advocacy group, because the leaders do need education. Many in VT look to Ability Maine http://www.abilitymaine.org/ for support, as they are the largest group in Northern New England. Vermont Center for Independent Living had a person knowledgeable and helpful about MCS who is gone. This is from Ms. Ingerman, whom I thank for making MCS visible in Vermont:
“Vermont Canaries Summery to date – January, 2012 After the annual CFIDS Vermont gathering in Burlington, in 2010, several people living and struggling with Multiple Chemical Sensitivity (MCS) met at my home to discuss our needs, and how to get them met. We were full of ideas, and inspired to make some changes that would improve the quality of our lives. I created the name and logo for a group, and organized our first meeting. We continued to meet almost every month, until September of 2011. Over time, the only participants were those affected by MCS, and the occasional person invited in to support specific projects. We created a board of directors, incorporated our name, and met with a S.C.O.R.E. representative to help define our next steps. A sample copy of a small non-profit’s bylaws were obtained and the revisions begun.”
“Through research, we became aware of more national and international organizations helping to network, educate and support people with MCS. We eventually chose to become a chapter of the Human Ecology Action League (HEAL); the oldest national organization dedicated to MCS. Our name is now registered as “Vermont Canaries: A Chapter of HEAL, Inc.” Our Mission statement reads: “Our goal is to create a safe, accessible Vermont for those who are debilitated by synthetic chemical exposure, and to educate, in order to ensure a healthier future for those not yet affected.” These decisions were made within the group and accepted unanimously. Board members are Ishana Ingerman, Elise Marks, and Dr. D’Amato. We have had one board meeting.”
“Outreach: A request was sent to United Way for support in getting healthy volunteers. We were told twice to move forward with job descriptions and an on-line profile of Vermont Canaries. The permission was there, but our energy and cognitive capacity was lacking. We were encouraged to become a 501c3, and filled out part of the paperwork with help, yet, because of our disability, the writing and organizational defining has remained unfinished. Over the last year and a half, I have sent out several pleas for funds, both for specific educational projects and for the 501c3 paperwork fees. No funds above $5 or $10 were received. A television show producer agreed to interview Elise and I, and again, the very nature of our condition prevented us from being capable of showing up for a preplanned date and time, with the necessary cognitive functions in place. VCIL, VPIRG, 211 and others were made aware of our existence, but no volunteer or financial support was forthcoming. We are using my private P.O. Box, and none of us have extra funds to afford a Vermont Canaries bank account, which would cost us -until the 501c3 is completed and paid for.”
“Transportation: Transportation issues abound for many living with MCS. Even if a person has the energy, and is pain free enough to come to a meeting, there is no safe public transit access, and SSTA does not have a fragrance free policy, even for its employees. If one does not own a car, there is a problem. “Good News Garage” is not willing to help the disabled of our community as their “funding does not include that category”. Over the past year I have seen the MCS community pull together, giving each other rides to doctors’ appointments, helping with shopping, and even helping with the long process of finding a vehicle to purchase, that is chemical fragrance free. Recently the VNA has received funding for their moderate needs program which now offers some much needed support to a few members of our community. The VNA, however, prohibits their employees from giving rides to medical appointments.”
“Housing: Most agree that safe housing is one of the most important goals for our group. Right now our members have to cope with neighbors who share walls, and refuse to use nontoxic products; apartments in which heat and air carry toxins from one to another; multiple unit facilities where indoor public access areas are made off limits during renovations; homes where no laundry facilities are safe, or allowed. No one living in close proximity to others can safely open windows at any time of year. Safely enjoying outdoor space is a luxury not even public parks can offer us. As a result, I called an architect. John Alden of Scott and Partners agreed to learn about our needs. Mr. Alden came to several meetings, researched the requirements for a safe housing project, specifically addressing our needs, and presented us with a proposal. Funding has not yet been found, and part of the reason lies in the wide spread ignorance of our present condition and our legal rights as people living with a disability.”
“Tradition: In June of 2011, the first anniversary of our group forming, I presented awards to both a Medical Professional and a Public Servant who made significant efforts to provide access for people with MCS. Todd Greeno changed all the hand soaps and cleaners purchased by the Parks and Recreation Department to the non-scented variety, and Dr. D’Amato asked that her clinic, and clinic employees, provide a scent free work environment, changing the cleaning products for gowns and office maintenance. Though the integrity of these changes has been challenged by the use of “air fresheners” and highly fragranced neighbors, respectively, the effort is there, and needs to be acknowledged. It is my hope that we can continue to give out recognition where it is due, every year in a similar way.”
“Individual work: People involved with Vermont Canaries mostly work on their own, educating others as the occasion arises. Some individuals stand out for their work. Here are a few examples: Elise Marks, in spite of a difficult living situation, has created and maintained the Vermont Canaries’ facebook, MySpace and Yahoo group. She has come to almost all the meetings, spoken for the group on camera at the 2011 CFIDS VT annual gathering, and continued to support the organization by passing out fliers and keeping financial records. Dr. D’Amato agreed to be our medical professional on the board of directors. A HEAL Chapter requirement. She has worked to create an MCS safe clinical space. She has educated herself and others about MCS, has come to several meetings, spoken on camera at the CFIDS televised event in 2011, and is now competently diagnosing patients with MCS. This is a rarity among the medical professionals in Vermont, and I think we are all grateful for her commitment. Dr. D’Amato has also been our most generous financial contributor, donating educational pamphlets and display cases. Lauren Chase lives in Central VT, and though she does not attend meetings frequently, she is dedicated to educating others, both one on one and in groups – using her personal story, and educational materials from VTC and HEAL among others…. Other people continue to advocate for themselves in their struggle to have their disability understood and respected. With a more visible profile and more healthy energy, I believe that Vermont Canaries could offer an important educational resource and advocacy for the MCS population.”
“My Personal Involvement: My contribution has been to organize meetings, provide graphics and logo design, write pamphlets and to start work on a booklet to help medical professionals understand MCS, its diagnosis and treatment. I have also started taking film footage in Burlington to document what living with MCS is like here. My disability is getting in the way, as editing is a complicated process I can’t learn at the moment. My own research into my health issues has led me to a discovery. MCS often mimics some of the most common symptoms of Traumatic Brain Injury… only in waves, depending on exposure levels. And some people with TBI quickly develop MCS. Both injuries have to do with the nervous system, one being a concussive injury, the other caused by chemical poisoning. I’m hoping that, by acknowledging these similarities, people with MCS will gain more understanding. I hope to continue my involvement with housing design, educational events, and regular meetings. I am also hoping that someone else will take on the responsibility of calling and leading monthly meetings, arranging public announcements, taking notes and creating summaries of our monthly meetings, and spearheading the 501c3 process. I plan to leave the position of Meeting Organizer and leader after February 14th. We will need a replacement.”
“My gratitude goes out to all of you who were, and still are encouraging and supportive in our efforts to make people aware of our plight. Listening and believing us is the first step to healing. MCS affects people of all classes and abilities. Elderly and children, the well established and the New Americans are all suffering from contact with common toxic, unregulated chemicals. One couple recently quit jobs and moved away from Burlington for lack of safe, nontoxic neighborhood options. Another, older couple is selling their mobile home because they are being poisoned by their neighbors… and both these couples have struggled to find safe housing options elsewhere. Gainfully employed individuals have trouble getting their needs accommodated… while others are now too poisoned to recover easily, their systems too damaged to allow for regular work. The numbers of disabled grow, only for lack of education. This is a serious economic concern for our state economy… and no one is looking. Those that wish to heal must isolate. Our suffering has been no less real in the face of disbelief. In fact – the pain and trauma caused by lack of compassion, understanding and support often causes us to build up walls of resentment as thick as any racial or religious barrier. We need to be treated with a cautious respect, and much tenderness… and above all, understanding. If you can help us help ourselves, please let us know. We know many things that need doing… We just need some energy and actual support. Thank you. Sincerely, Ishana Ingerman, Co-Director, Vermont Canaries P. O. Box 212 Burlington, VT 04502”
Those with MCS have a debt of gratitude to Ishana Ingerman and Carol Westinghouse, plus the others working without public knowledge. Thank you to all of you, H. Awen!
Thinking of Moving to Vermont?
Think more. Dr Abrin advises clients in California, the Southwest, etc not to move here. The main reasons are mold and wood stoves. Almost all housing has mold. If you weren’t mold sensitive already, Vermont might make that a new problem. These are old buildings in an impoverished state.
Vermont like all of the Northeastern US is in a Lyme Disease epidemic. Hunters are now encouraged to have their doctor give them amoxicillin before they enter the woods and to take the antibiotic if bit by a tic asap. Half the children of my friends here have Lyme. Since Lyme is mutating the tests are not very accurate. Many people who thought they had fibromyalgia are learning it is undiagnosed chronic Lyme. (Lyme like malaria is chronic.) This is one of the many challenges to being outside in Vermont. If you have chronic Lyme there are a few good doctors (MDs and NDs) who use the old antibiotics and treat the resulting Candida while having patients change diets and sometimes take other immune supplements. However, most doctors still don’t believe in chronic Lyme.
Also hayfever and seasonal allergies are a problem for most people here. Tree pollen and ragweed is abundant. We also have a lot of deer flies, horse flies and mosquitoes. There are a few rattlesnakes near Fair Haven (Abenaki call it Snake Mountain) but no other dangerous snakes. The spiders to watch for are the Brown Recluse and Black Widow. Growing up here I was bit by a lot of spiders.
Wood smoke was the bane of my childhood in Vermont when my MCS was mild. You cannot get away from wood stove smoke in Vermont. This means you won’t go outside in a state whose main selling point is nature. People still illegally have burn barrels where they burn plastics because they cannot afford going to the dump.
Also this is an agricultural state and so there are pesticides. The indigenous Abenaki wisely used the vast amount of fresh water -the lakes, bogs, marshes, rivers – but now many fresh water places have pesticide run off (endocrine disruptors) and oil spills on shore from boats.
There is still a lot of logging which means remote areas have deisel fumes. Being such a small population (600,000 people in the state) most roads are treated like highways, with a lot of trucks. “Back roads” are usually Class Four and will destroy most cars. The main source of income is tourism because Vermont is beautiful. That traffic and need to do constant upkeep on roads, along with logging and the general infrastructure, means remote places are usually populated or being repaved.
Politically, yes, Bernie Sanders is a socialist even though he says he is an “independent.” However with him in US Congress, he doesn’t have very much to do with Vermont anymore. Even though he on a national level has fought for MCS related issues like Gulf War Syndrome, he doesn’t affect Vermont.
Vermont has the second highest average age, just behind Maine. The state is filled with an aging population and if you are coming from Portland, Toronto, or even Omaha, you may be surprised at how… 1980s the left is politically. There appear to be online many Transition Towns but in reality not so much. Don’t be fooled by the Internet.
Depending on where you move, expect a 3-7 year wait for subsidized housing. Many Section 8 housing lists are too full to even take new applicants. Vermont has a lot of elders in need of housing and many young veterans. As a poor state many young men were in the National Guard and ended up in wars they did not expect or even support in the case of those veterans I know.
Also it’s hard to find young, healthy people to do any home health work. The youth population is small and most are in one of the many Vermont colleges, which takes wealthy parents for the out of state students who come to major in snowboarding. Renting can be problematic if you don’t want keg parties and a meth lab above you as most rentals are for students. Also lead paint still is often an issue. Be prepared for mud bog races. Vermont’s number one problem according to politicians and the media is (still) heroin and opiate addiction. Like any rural area we do have our meth labs (the Quebec biker gangs are infamous for that). But today doctors are very wary to write any opiate RX, even if you move here with medical records and have been on them for years. Gangs from the Bronx have divided parts of Rutland for drug selling and turf wars do occur.
If you think your children will be safe from drugs and violence, you’re very wrong. Alcoholism rates are high here as are 12 step meetings, typical in a lonely place with long dark winters. DUIs and alcohol-related domestic violence comes with that.
Due to the low population, lack of safe transportation, and nowhere safe to meet in person, organizing MCS meetings in person has proven to be very difficult. Many activists have ties with ABILITY MAINE, the largest northern New England disability organization. I personally really like them and their radical the personal-is-political stance.
You may have to rent a PO box, hire a person with a snow plough all winter, and take trips to the dump as well as the recylcing center because many towns’ services do not include those things. Many people leave after one or two of our very dark, isolating winters. (If you have SAD get a lamp now unless the EMFs hurt you.) This is a great state for introverts. I joke that “Vermont is for loners.” By percentage Vermont is the whitest state in the nation. Vermonters are often proud of not being racist but they usually only know other white people. Persons of color I know, especially men, are pulled over by police constantly. I have seen Confederate flags in rural areas (one home with two state trooper cars is the most notable) but that may due to their service in Vietnam, yet I doubt it.
Gay marriage is legal here, but that doesn’t mean everyone agrees with that. Places do discriminate. Establishments owned by conservative Catholics often won’t hold gay wedding receptions. Also all young gay people I have met go to Montreal just to dance and hope to get into an out of state college so they can date. The state doesn’t have one gay bar or cafe. This is Puritan New England, don’t forget. As a state with an older population, youth culture is nonexistent and even worse for young gay people. My classic Vermont classism moment was when after Irene destroyed the state and 1 in 5 Vermont children were suffering from hunger, in the most impoverished region of Vermont the older liberals had a big fundraiser… for Nepal.
The state has a severe doctor shortage so expect to be on a wait list for 6 months to a year before you can even see a doctor. Some turn away anyone with chronic illness. There is a lot of “alternative” medicine here but that doesn’t mean the people are very good at it. It also is part of the class divide. If you are interested in 1980s New Age spirituality, there are many people who will take your money. There are probably more terrible Reiki Masters and shamans here than anywhere else. Sadly if you want another type of energy work, acupressure as opposed to acupuncture, or to stay away from cultural stealing, it’s very hard.
We do have a lot of good chiropractors if you can tolerate their offices. (I can’t.) Vermont has the lowest standards about who can be a therapist. If you want to see someone who practices evidence-based psychology (things proven to work like mindfulness, DBT, ACT, etc) you’ll probably have to be in Chittenden County.
You will need a car (or truck) with snow tires. Even in Burlington the public transportation is terrible, especially in the “ethnic area” “working class” the Old North End. (I had a friend from Senegal who had to ride his bicycle in 20 below when he got off work. That the poorest part ofthe city had the least bus coverage is a statement about how Burlington caters to college students.) Burlington is famous for its urban sprawl so be prepared for a lot of traffic, one way streets, and sudden highways. Going north-south is easy on highways but crossing the state is harder and takes more time than you may think. The Green Mountains are old and thus not very tall, but they do present problems like white outs and lots of curvy roads. Boston is about three hours south and Montreal is about three hours north. Trucks go through Vermont to those cities. Burlington has a small airport.
Now that I’ve scared you with reality, I can say what Vermont does have. If you are on SSI, Vermont adds a little so you get a whopping $740 a month. Naturopathic doctors are covered by Medicaid but their supplements are not. Dartmouth in New Hampshrine and Flecther Allen in Burlington are both well respected hospitals although Fletcher Allen has a higher than usual post-operation infection rate. (Fletcher Allen appearsto be changing its name.) Neither believe in MCS. The VA is in White River Junction.
The state has organic medicinal marijuana MMJ, with centers in Chittenden County (Burlington area), Montpelier and one other place, possibly Rutland. Unless you live in those towns you might be making a two hour drive. If you are on Medicaid you get a 10% discount. Every year you’ll need to pay $50 to register and have a doctor renew your prescription. I was concerned and wary, but the dispensary was very helpful and I found a strain that eased my insomnia far better than Valium. They have mastered this science. Different strains help with different problems. I obviously eat it, cooked into coconut oil which can be baked into bread, added to meat or put on english muffins. I have very few food and herbs I can tolerate and even though hemp fabric or people with the smoke in their hair causes a reaction in me, MMJ doesn’t.
Vermont has a lot of local organic farms and farmer’s markets are real money savers. Sadly they often have BBQs there, making the air intolerable. The state is known for small dairy farms. If you want to be a locavore and eat grass fed, free range, organic etc dairy and meat, this is a good place. Co-ops can often help you contact the farmers and ask about the nutritious rarities others don’t want like organic liver, chicken feet and beef heart, which may be free. Some give away the bones for making soup stock. Also there are places to buy raw milk here even though it is illegal. Co-ops can order foods for you.
Aside from Montpelier and Burlington the health food stores themselves are small, with a much smaller herbal medicine selection than most. We have nothing like those giant Whole Foods here. (The state doesn’t even have a Target.) Vermont also passed the GMO labeling bill.
Gardening is a big hobby here, although the soil is often better for raising goats than veggies. Kale and related vegetables tend to grow well. The growing season tends to be short. When I was a child growing tomatoes was hard, but now that it is warmer, people have better luck. With Climate Chaos, summers have become much more humid and thunderstorms more common, so root veggies have been rotting and hay has begun to be imported which is highly unusual. Most gardeners I know now grow different foods that thrive in different climates, hoping something turns out well. Keeping chickens and goats is very common. I grew up with both. I’ve seen chickens in Burlington although I don’t know if it was legal.
Thanks to the legal work of Carol Westinghouse schools in Vermont now have to use “green cleaning supplies.” Some schools have banned body sprays. Westinghouse is also responsible for many day care and Head Start programs being aware of chemical health risks and making changes. Schools are not a MCS safe zone, but may be less toxic than other states. (However they probably have mold.)
The Northeast Kingdom (NEK) is the most impoverished and conservative area in the state. I live there and have found that many people here have MCS but don’t call it that. Farmers, mechanics, veterans and people who work at ski resorts often have MCS (and TBIs). My mask and the words “chemical injury” actually cause sympathetic understanding with many blue collar people. I’ve found that many mothers are aware of MCS.
Vermonters bond on hating the telephone provider, Fair Point. Vermont doesn’t have a population to make it worth servicing, so rumor has it that when Ma Bell fell apart Fair Point was forced to take Vermont. Fair Point may be better now, although their workers currently are on strike. Cell phones and GPS work in most places although the NEK has terrible reception in some places which may good news for those with EMF issues. The population is far too low to make cell towers worth it. I personally like that.
A lot of people have solar panels and live semi-off the grid and many like my mother until recently live completely off the grid, so if that’s your lifeway, you will find many resources if you have the money. I grew up that way for a while and loved it. I was sick whenever I went to school and when we lived in other places because I had MCS even then, so living in a tent bathing with Dr Bronners in a stream away from traffic and other people’s chemicals worked for me.
However the woodstove and oil lanterns for light did bother me. Winters in Vermont are the only place where my vasomotor rhinusitis (nonallergic runny nose, post nasal drip, sinus headaches, etc) never stops. Vasomotor rhinusitis is now known to be caused by irritation from chemicals, smoke and hormonal changes, often called an occupational illness. My most famous allergist said it tends to affect women who grew up farmlands the most, a place of endocrine disrupting pesticides. I’ve noticed many with MCS have it and consider it an Environmental Illness because the only treatment is avoidance.