The film opens with a screen that says:
This film is a composite of new footage, as well as
excerpts from earlier Johnson/Startzman films.
William Meggs, MD, PhD: There’s a significant percentage of people in our population who have a hyper-reactivity to common environmental chemicals, things like cigarette smoke and paint fumes and solvents and cleaning products, ammonia, various irritating chemicals. And the more extreme of these individuals have what we call multiple chemical sensitivity syndrome, and these are individuals who are so sensitive to these everyday chemicals they have problems involving multiple organ systems, and in the more extreme cases are actually disabled by their inability to function in ordinary society where every day of our lives we’re exposed to a host of these environmental chemicals.
Alison Johnson: A few years ago a taxicab driver from Las Vegas e-mailed me to say: “I was making good money driving a taxi, but I had to resign because the other driver would spray it with air freshener. Eventually I got so sick I had to quit.”
This taxicab driver is just one of millions of Americans who are desperately trying to hold on to jobs that are damaging their health and making them sicker with each day that passes.
Narrator: Alison Johnson developed multiple chemical sensitivity in 1973, and through her own experience and the experiences of her chemically sensitive daughters she has gained a wide knowledge of the field. Visitors to her website, www.alisonjohnsonmcs.com, can read excerpts from her three books and play several of her videos. In 2001, she founded the Chemical Sensitivity Foundation, which she chairs.
Michael: People just don’t understand how sensitive you can be and how sick you can become from, you know, household cleaning products or their perfume or their aftershave or little things like that.
Richard (Painting Contractor): When I would go and do a painting bid, and, you know, I’d be trying to impress the customer and give him all kinds of information, that sort of thing, and I would sometimes lose my ability to speak. This was very distressing to me. I’ve later come to associate that with certain types of exposures to perfumes and fabric softeners, but at the time I didn’t know what was going on. All I knew was that I would lose my ability to concentrate well enough, lose my ability to think clearly enough to express myself, and I would just stand there looking kind of stupid. Obviously, I stopped winning contracts at that point.
Alison Johnson: People who develop multiple chemical sensitivity, or MCS, begin to react to chemicals that they encounter in everyday life in substances such as paint, perfume, pesticide, cleaning products, detergents, fabric softeners, gasoline, diesel exhaust, cigarette smoke, new carpets, building materials, and air fresheners.
Chip: I’m a high school history teacher from Washington State, and I became very ill working in my classroom. Mold was discovered in my classroom, and I became very sensitive to mold and later developed multiple chemical sensitivity.
As a result of this, my workplace environment became very difficult. I became sensitive to some of the products we were using in the classroom, magic markers, white-board markers, the shampoos they were using to clean the carpet, and some of the cleaners that they were using. I initially discovered this by losing my voice. I became very hoarse, and as a coach and as a teacher, you can understand how that became very difficult to do my job. Ironically, I was an All-American wrestler in college, and everybody was very surprised when I became very ill and had many different symptoms—headaches, I gained a considerable amount of weight, I had a lot of fatigue and basically was very lethargic, didn’t have a lot of energy as a result of these acquired sensitivities.
My workplace environment did improve a little bit once the school decided to move me into another classroom that was not infected with mold. It was very challenging and very difficult to do my job. The students I had to ask not to wear perfume, which was awkward for some of these younger kids that really didn’t have an understanding or a sensitivity to the possibility that people react to various chemicals.
Linda Austin: This is why I care about fragrances and sensitivity to fragrances. It has affected my life, and I have grandchildren and children, and I care about the future for them with respect to them being in the workplace, their being hospitalized. And in my own condition, my case, if and when I ever go to a nursing home, so I care about this. I did not inherit my fragrance sensitivity. I started with a chronic cough in 1991, and at that time we were going through a house renovation. The cough became progressively worse and eventually I was hospitalized in 1994 with a life threatening pneumonia. Unfortunately, they could not figure out what was causing it. And it was a life-threatening pneumonia. I was intubated for three weeks; I was in the hospital for four weeks, and nothing they ever gave me or used, the protocol was just keep her alive and hopefully her own immune system will kick in. And fortunately that’s what happened. But even once I came out of the hospital I continued to have this chronic cough. I saw multiple doctors, multiple tests, and no one could exactly tell me why.
But to this day I still have a cough and what triggers the cough now I think because my respiratory is sensitive, are things like fragrances, and that can be difficult, particularly if you are in an elevator and someone gets on and they can have a lovely perfume on or hair spray or whatever, and I start coughing. And it can be embarrassing, it can be very embarrassing. The worst situation is if you are in a meeting and you’re with friends you like, you know, and you want to turn and you want to say, “Oh, that’s lovely. That fragrance you have is lovely, but I need to tell you I’m going to start a cough spasm because I can’t tolerate it.” So it affects me every day.
So even though I don’t have the condition that you would diagnose as chemical sensitivity, I definitely understand what it’s like simply because of my inability to deal with fragrances, and how it affects you every day, and how difficult it is to say to someone, you know, “I’m very sorry, but I wish you wouldn’t wear that, even though slowly, and I myself, I loved fragrances before this happened , but I have to watch everything, I have to watch any makeup I would use, any bathing product I would use, you always look for the fragrance-free. I cannot go into candle shops. When I’m in a department store I totally go around where all the fragrance and makeup is. It will start me coughing, and unfortunately, because of all my pulmonary problems, I can go into chronic cough spasms. And they’re not nice to experience, they’re worse to see, which embarrasses me.
Narrator: Christine Oliver, at Harvard Medical School, is the director of Occupational and Environmental Medicine at Massachusetts General Hospital.
L. Christine Oliver, MD: Multiple chemical sensitivity, or MCS, is a multisystem disease that is characterized by symptoms associated with exposure to low levels of chemical vapors. These levels of exposure are commonly found in the ambient environment. Systems that are affected by MCS include the respiratory system, the neurologic system, the gastro-intestinal system, the skin in some cases.
For those with less severe illness and disease, symptoms may include cough, shortness of breath, headache in association with the exposure to chemicals on an elevator, or when they open a magazine and have a scented insert in the magazine. For those more severely affected, however, symptoms can be truly disabling. They interfere with a person’s ability to engage in gainful employment. They interfere with a person’s ability to use public transportation. They interfere with a person’s ability to live in a multifamily housing unit. They interfere with family life.
At this point a screen appears that says:
Common MCS Symptoms
- Extreme fatigue
- Muscle pains
- Joint pains
- Difficulty concentrating
- Irregular heart beat
- Sinus problems
- Memory problems
- Intestinal problems
Narrator: One reason that the medical profession has found it difficult to understand multiple chemical sensitivity, or MCS, is that patients with MCS can have a wide variety of symptoms as the result of chemical exposures, with different patients having different symptoms. A given patient, however, will usually have the same symptom in response to a given exposure, perhaps getting a headache after exposure to paint or getting arthritic pains after exposure to natural gas.
Chris Markham: My name is Chris Markham, and I’m a retired photographer. This is my wife Maureen, and she’s a retired nurse. And I developed a breathing problem they call MCS, probably back in mid-2013, about mid-2013. It started after our house was destroyed in the Sandy storm; a tree took it out. We’ve been different places; this place we’re renting. In the meantime I went to back the house, which was quite damaged, and I crawled through all the spaces in the house and the lumber to salvage whatever I could. And I did that for two months, every day. And I didn’t have a problem in there at the time, but we’re thinking now that might have been the thing that triggered it off because I never had a breathing problem
And then fabric softeners began to bother me, and our detergent also. Didn’t really realize what it was, but began to smell it. Every now and then I’d get a coughing fit and then it was over with. So eventually we said, couldn’t we just get rid of this stuff here, so we did, we just dumped it out and got the free stuff. But still I began coughing and choking more, and it just increased gradually.
Then I guess it was in 2014, my wife was working then at the hospital as a nurse, and she’d come home from work, and we would be fine, go about our business. I would have little attacks here and there. Some days I actually had no attacks at all, in 2013, and part of 2014. But we don’t know why.
Well, one day she walked in the house, on a Tuesday afternoon, came home, and I began choking and coughing, and smelled everything she had on her. It was apparently an air freshener, but I didn’t know what it was. I said, “My gosh, what’s on your clothes, take them off.” So she said, “There’s nothing on my clothes.” And I said, “Where did you have your coat? It’s choking me.” So she believed me, though she really couldn’t smell much. She has Parkinson’s. And they don’t smell as well as someone who doesn’t have Parkinson’s. So she put her coat down in the cellar and changed her clothes and put them on the back porch, but it was still in her hair. And she washed her hair, and I was better after that, more or less. And then this happened every single day for eight or nine months. It was a routine. When she came home from work from the hospital, she would have to change. She would always have to wash her hair. Sometimes I was OK with it eating dinner. Other times I wasn’t, and she would eat in the dining room, and I’d have to sit at the kitchen table and eat, otherwise I would begin choking and bring up a lot of phlegm, and trying to eat supper, forget that. So I would have to go in the bathroom and take care of myself until it was over—sometimes an hour, sometimes an hour and a half.
At this point a screen appears that says:
Fabric softener and perfume in the ambient air clings to clothing and upholstered furniture in much the same way cigarette smoke does. That creates a major problem for people who react to fragrances.
Narrator: Fabric softener and perfume in the ambient air clings to clothing and upholstered furniture in much the same way cigarette smoke does. That creates a major problem for people who react to fragrances.
Chris Markam: We used to love to walk.
Maureen Markam: We can’t walk now because whenever we go out walking, there is so much fragrance from the fabric softeners in the air. We can’t even go for a walk now. We can’t go to a relative’s house for holidays because he mainly stays home because of the fabric softener. He gets attacks. Can’t even go out on holidays now.
Chris Markam: I’ve missed two Thanksgivings, two Christmas Eve’s. A big deal with my aunt.
Maureen Markam: Some nights he’s been so bad I wanted to call the EMR, but he doesn’t want me to call the EMR and bring him to the hospital because the hospital has the fragrances and he’s afraid he’s going to get worse, so he won’t go to the emergency room.
At this point a screen appears that states:
At the request of the filmmakers, Chris took a video of himself having an attack the night after we filmed him.
Narrator: At the request of the filmmakers, Chris took a video of himself having an attack the night after we filmed him.
Chris Markam: You should tell them about the fragrances that were on her clothes and where they were coming from when she came home from the hospital. You should know how this came about. Do you want to tell them about that? The stuff they put in your office?
Maureen Markam: Oh, you mean when I was working?
Chris Markam: Yeah, when you were still working.
Maureen Markam: Oh, it’s a mechanical; it runs on battery. It has fragrance softener, so every few seconds it shoots off perfume. And it’s high up on the wall, so people didn’t realize it was there at first, so it would keep shooting off perfume. When I realized what it was doing, it was running by a battery, so I took the battery out, and everybody was thankful that they didn’t have to smell it anymore.
Chris Markam: What about the stuff under the desk? Out in the other area?
Maureen Markam: Oh, yeah, it was like little discs, fragrance things that adhered to the wall. And nobody really realized it was there at first. So we had to go searching for them and remove them.
Chris Markam: The thing is that this was on her clothes. And she didn’t know where it was coming from; it was something new. She’d been working there 48 years, and one day it started, as I told you. Then it was almost a year—eight, nine months. She came home and said, “I found out what it is.” And she told me, actually, I don’t want to tell you this, she worked at the hospital, she ripped it off the wall. She took out the battery. Tell them what happened with your hands when you took it off. There was a pocket under her desk she took out. These discs, and they smelled quite a bit apparently. Tell them what happened when you took it out, with your hands.
Maureen Markam: Yeah, I smelled it on my hands.
Chris Markam: But you couldn’t get it off. She had a hard time removing the smell. So that was unbelievable. So that really was my first exposure because of a medical facility
At this point a screen appears that states:
Air filled with air freshener is not fresh air.
Narrator: Air filled with air freshener is not fresh air. There are still many places in America where one can find fresh air, and here is one of them.
Alison Johnson: This is wonderful fresh air here. This is probably some of the best air in the world. This is Reid State Park. It’s a wonderful place where I come every chance I get, maybe once a week, with a book or a picnic lunch. I actually wrote several of my books sitting right here on these rocks, looking out at this beautiful ocean.
While Dr. Christine Oliver is reading the list of banned substances from the CDC document in the following section, a screen appears showing page 9 of that document.
L. Christine Oliver, MD: In June of 2009, the CDC put on its internal website an indoor air environmental quality policy intended to maintain good indoor air quality in buildings in which its employees work. Among other things, the CDC policy states:
Scented or fragranced products are prohibited at all times in all interior space owned, rented, or leased by the CDC. This includes the use of the following products:
- Incense, candles, or reed diffusers
- Fragrance-emitting devices of any kind
- Wall-mounted devices, similar to fragrance-emitting devices, that operate automatically or by pushing a button to dispense deodorizers or disinfectants
- Plug-in or spray air fresheners
- Urinal or toilet blocks
- Other fragranced deodorizer or reodorizer products
In addition, the CDC encourages employees to be as fragrance-free as possible when they arrive in the workplace. Fragrance is not appropriate for a professional work environment, and the use of some products with fragrance may be detrimental to the health of workers with the following: chemical sensitivities, allergies, asthma, and chronic headaches/migraines.
Narrator: It is important to note that the EPA website lists air fresheners as a source of indoor air pollution.
L. Christine Oliver, MD: The CDC Indoor air policy is a very important policy and provides an example of what we should be doing in every workplace in the country. I think all workplaces should be fragrance-free. The number of people who are chemically sensitive and/or with diagnosed MCS is increasing on a daily basis.
A fragrance-free policy allows these individuals who are chemically sensitive to continue their employment. As a result, they do not have to turn to Social Security Disability for income. Those who are not the beneficiaries of a fragrance-free policy are often unable to work and do find themselves on Social Security Disability.
William Meggs, MD, PhD: We want to keep these people in the workforce; we don't want these people on public assistance, and it's vitally important that we make our workplaces free of chemical pollutants.
L. Christine Oliver, MD: Patients with MCS and physicians who may be treating them need to remember that if it's too good to be true, it probably is too good to be true. There are no miraculous cures out there, at least none that I know about. Patients with MCS travel great distances sometimes to receive what is touted as a miracle cure. They spend lots of money to receive this so-called miracle cure, and in the end it is not a miracle cure. It often makes symptoms worse rather than better, and at the end of the day it does not cure the disease. Until we better understand the pathophysiologic mechanisms, we are not going to be able to do much better than avoidance of exposures in my opinion. And to better understand the pathophysiologic mechanisms, we need funded research in this area.
William Meggs, MD, PhD: Funding for research in chemical sensitivity in this country does not measure up to the size of the health problem, the public health problem that it is. Japan does a much better job than we do in studying this problem and making funds available for serious researchers. I believe the reason we haven't seen more research funding is political rather than scientific. There are commercial interests, the manufacturers of consumer products that pollute the air that we breathe and the Worker's Comp insurance companies and others that perceive that if we knew more about this problem they would be liable for people's suffering, and frankly, they don't want it studied.
During the following narration, relevant documents appear on the screen.
Narrator: The website of the Chemical Sensitivity Foundation contains a bibliography of research articles on chemical sensitivity that have been published in peer-reviewed journals in the United States, Japan, France, Italy, Spain, Denmark, Sweden, and other countries. The entire 13-page Centers for Disease Control policy on Indoor Environmental Quality is also available on that website, as are many other documents relating to fragrance-free workplaces.
During the following narration, relevant documents appear on the screen.
Narrator: On October 23, 2016, an important new study was published in Air Quality and Atmospheric Health, by Dr. Anne Steinemann, a civil engineer with a PhD from Stanford who has taught at Georgia Tech and the University of Washington and now holds a chair at the University of Melbourne. Her article titled Fragranced Consumer Products: Exposures and Effects from Emissions describes the results of her nationally representative population survey in the United States. Among the most important results are the following:
Over 50% of Americans surveyed would prefer fragrance-free workplaces.
Over 50% would prefer that health care facilities and professionals were fragrance-free.
More than twice as many customers would choose hotels and airplanes without fragranced air than with fragranced air.
William Meggs, MD, PhD: Dr, Lea Steele, an epidemiologist, published a study in the American Journal of Epidemiology in November of 2000 which documented that over 200,000 people who served in the first Gulf War are now chronically ill. That’s over one-third of those who served.
Dr. Ronald Blanck: In the mid-1990s, I commanded Walter Reed Army Medical Center. I continued to work on looking for causes for the illnesses suffered by many Gulf War veterans, illnesses that were clearly more than stress related. I looked at vaccines, I looked at exposure to smokes, to other toxic chemicals, petrochemicals, and so forth, all that were part of that battlefield experience, and I came to the conclusion that at least one of the explanations was multiple chemical sensitivity, something where a variety of toxic elements even at low levels by themselves in combination may in susceptible individuals be causing these illnesses, and I believe so much more work needs to be done on that, but it is clearly one of the explanations.
SFC Roy Twymon: Since I’ve been back from the Gulf War, you know, I also notice that a lot of things bother me that never bothered me before. Different perfume, different cologne, gas, different smell of even smoke or cigarettes, you know, I just automatically get sick, and sometimes it takes me days or weeks to recover. One day I was on the elevator and someone got on there with some loud perfume, and then all of a sudden it hit me, and I got lightheaded.
Narrator: Roy’s blood pressure shot up so high that the emergency room staff thought he was having a heart attack. He ended up spending four days in the hospital.
SSG Bob Jones: As a paratrooper, I had extensive exposure to jet fuel and jet fumes, and it never bothered me. And after coming back from the Gulf War and having been in the oil fields for that length of time, breathing in the noxious fumes on a daily basis, now just the smell of diesel fuel makes me severely nauseated, dizzy, and very sick. Perfumes, I don’t wear any type of cologne because it makes me nauseous.
Narrator: Terry’s extreme sensitivity to chemicals makes him especially vulnerable to perfume inserts in magazines.
SFC Terry Dillhyon: I hate it. Somewhere in a magazine you’ll be reading and they’ll have a perfume advertisement. And when you open that page, it releases that perfume. I had it hit me one time. I was just going through the magazine, I opened it up, and this was apparently a pretty potent perfume that put me immediately into an asthma attack. And I had only just been diagnosed with asthma since I had come back from over there.
The asthma attack I had increased during the night. I used my inhalers and went to bed anyway. Then my breathing got extremely bad. They sent a rescue unit to get me. And in the rescue unit, I stopped breathing three times. They took me straight back into the emergency room, continued giving me treatments. About the time they thought I would be all right, I quit breathing again. And it took a couple of days to get me back to breathing like I was supposed to, and all because of a dad-burned little advertisement for a perfume that cost me a couple of days in the hospital.
I had a $580 rescue bill. I had over $2,000 emergency room bill, and approximately $3,000 hospital bill. I’m not getting any assistance. I have no Medicare because I haven’t been approved yet, and I’m not getting anything from the government. I had to pay these bills myself.
Tara Batista: I’m Tara Batista. I’m a registered nurse at the VA hospital in Bedford, Massachusetts. I joined the army when I was 18, and at age 19 I was sent to the Gulf War in 1990–91. I had exposure to CARC paint, nerve agent, petroleum products, chlorine gas, oil well fires, all sorts of chemicals, and developed chemical sensitivity, migraines, and all sorts of symptoms since then.
So after the army, I became an RN. It was extremely difficult with being chemically sensitive and allergic to every scented product like perfume, scented hair products, etc. And it’s surprising that I had such a rough time just in school and then in every job I had because in nursing school they teach you not to wear scented products because it causes vasospasm, bronchospasm, and allergic reactions in patients as well as staff. After that school, I got a job at a prison; it was one of the early jobs. There was a doctor that worked there. I had an accommodation, and the supervisor asked everybody to refrain from wearing scented products. One day I remember when I had a reaction to a staff member’s perfume. I put the mask on; I tried to avoid her. She needed to be near me. I explained, “Please I’m having a problem with the perfume.” The doctor also was heavily scented, and the doctor actually told that person not to apologize, that I basically didn’t have a right to be there, is what she felt.
In 2008 I started working as a registered nurse at the VA hospital in Bedford, Massachusetts. It was a struggle in the beginning because I was exposed, with chemical sensitivity, exposed to scented products. My boss at the time saw me struggling and saw I was a good nurse, so she had a PhD person come and do an educational training about multiple chemical sensitivity, explaining the rationale to the staff why they needed to refrain from wearing scented products because I’m sensitive and get very sick. I had to work sick routinely because I didn’t have the accommodation in place yet. It took time for the board to decide. It took a long time. And I kept having to go outside and get air; it’s a big unit so it did help, and I always had to sit in front of an air conditioning unit to have air on me constantly. But I was sick constantly in the beginning. It was such a struggle. I ended up asking to go to evenings when a position opened because I knew the staff on evenings, there was only one person who wore perfume and I thought maybe I could appeal to his kindness. So out of desperation I requested going on evenings. And then a new manager came who enforced the accommodation. All I had to do if I had a reaction to something or somebody is e-mail her and she would have a private conversation and that would help.
Narrator: Under the Americans with Disabilities Act, covered employers are required to provide “reasonable accommodations” to qualified job applicants and employees with disabilities.
Tara Batista: One of my biggest problems was so many days I would develop a migraine from the staff’s perfume, and I had to continue working. I couldn’t afford to leave, and I just remember how difficult it was, and I really think the training as an army medic is what got me through it because you have to keep going. They trained me very well, and I care about the patients and I didn’t feel it was correct to leave despite pain and suffering, so I soldiered through.
At this point there appears on the screen footage of a gazebo and other parts of Tara’s garden.
Tara Batista: It’s late in the season, but this used to be covered with morning glory vines. They’re purple; they’re all seeding now, but we’ve had a frost. And this lights up at night, and then I grow heirloom roses, no pesticides, no sprays at all. So this heirloom, there’s two—one is called Eden. It’s this big, and it has this fragrance that is amazing. Natural fragrances are fine, and the New Dawn, which is also a pink rose, it smells like raspberries. It’s just awesome. It smells wonderful. So I spend all my days out here recuperating in the garden. I find it very grounding and nurturing. When you’re sick a lot you need something to rejuvenate yourself.
So I’ll show you the river. So all of these rocks I moved in in buckets from up the street. They’re all covered with leaves. So I redid the river basically, and this area, all the way back there I made a path with rocks I sit out here with a cup of tea or coffee and relax, and it’s beautiful. You hear the flicker overhead. And then the sound of the water when it’s high (it’s low right now because we’ve had a drought), It’s just my little piece of heaven.
Alison Johnson: For almost two decades, I’ve been writing books and making documentaries on the subject of MCS. In the eighteen years that have passed since I made my first documentary, Multiple Chemical Sensitivity: How Chemical Exposures May be Affecting Your Health, more and more people have succumbed to this condition.
I sent a copy of my film to Bernie Sanders because I had followed his work in Congress investigating the health problems caused by new carpet and the illnesses reported by veterans of the 1991 Gulf War, illnesses that are often referred to as Gulf War Syndrome.
I was so surprised one day when Bernie Sanders actually called me up, and he told me that he thought my film was the best presentation on MCS he’d ever seen. He then asked me if there was anything he could do to help. So I told him, well, if he would be willing to write me a letter of endorsement, then I could send that along with a copy of the film to some members of Congress.
At this point a screen appears showing the letter Alison Johnson received from Bernie Sanders.
Hugh Kaufman: One of the things that we uncovered at EPA doing investigations of releases of hazardous material is large numbers of people where there are releases start to develop what we call chemical sensitivity, and so we’re seeing health effects to the public around hazardous sites like the World Trade Center a year, two years, three years down the line, where people are now sensitive to chemicals. A little bit of perfume, for example, which would not affect anybody, can make people deathly ill.
John Sferazo (Ground Zero Ironworker): Since 9/11, the smell of gasoline and diesel fuel is such that I don’t get out and even fuel my own vehicles. I don’t even want it on my hands because of the odor. Being around the job sites and being around the smell of the diesel and gasoline, I am so symptomatic to that involvement that I was constantly getting problems with my throat, I would wind up going hoarse, and I would lose my voice, sometimes. The next thing you know from a sore throat, I’d have a chest infection, I get lung infections, then I get pneumonia, and this never ever happened to me before in my life. Now the smell of smoke actually ensickens me, sometimes giving me headaches. I know I can’t use any type of cologne or aftershave. I can’t take that smell, it’s sort of like a burning inside my nostrils. I’m very acute.
At this point a screen appears showing a photo of John Sferazo with then Senator Hillary Clinton.
Bonnie Giebfried (EMT, 9/11 First Responder): We were one of the first units into the South Tower. We got three individuals out of the South Tower. The last thing I remember seeing actually was a helicopter trying to go on one of the towers to get people off the tower, hearing, you know, someone say it was going to blow, and a humongous fire ball; it looked like a meteor coming at us.
Narrator: Bonnie had never had asthma before 9/11, but by the time the day was over, she had had three bad asthma attacks.
Bonnie Giebfried: People just don’t understand not being able to catch your breath, not being able to fill your lungs. It’s such a horrible, horrible feeling. It feels like someone’s crushing your chest, and basically sucking everything out of you.
I can’t be in restaurants because God forbid someone has perfume on. I can go into a fit. I can feel nauseous and throw up. My throat can close up. The multiple chemical sensitivity issues that have come from 9/11 have not been addressed. Household cleaners. Oh, my God, you just might just as well pack me up at that point and just send me to the hospital.
Joel Kupferman (New York Environmental Law & Justice): I’ve been tracking the firefighters post-9/11, and what many, many have told me and their medical reports have shown that they’ve become hypersensitive to other chemicals that are out there. They could be fine for a while, they have, you know, respiratory problems. They’re on 3/4 time, meaning that they’re not on active duty, and boom, they’ll come across perfume or other chemicals out there, even household cleaning chemicals, and they’ll just become immobilized, and some of them just become so sick that they can’t, they basically can’t function on a daily level.
Alison Johnson: Before she developed MCS at age 32, Jenn Duncan had a lot going for her in life. She had masters degrees from MIT and New York University. She had excellent creative jobs. and she enjoyed dance and yoga and playing African drums.
I have spoken with hundreds and hundreds of chemically sensitive people during the last four decades, but Jenn is definitely the worst case of chemical sensitivity I have ever encountered. She is way, way out on the end of the Bell curve. She stands as an extreme example of the neurological damage that chemical exposure can induce in certain individuals.
Jenn Duncan: I had developed chemical sensitivity prior to 9/11. The office building where I worked was doing renovations and after a prolonged exposure over several weeks in a poorly ventilated area to a number of those chemicals I had a number of strange symptoms and unusual things that were going on that then later on I realized developed into multiple chemical sensitivity and other chemical injury symptoms. After 9/11, with all the exposure of the smoke and the fumes blowing over from Manhattan into Brooklyn, I definitely experienced exacerbations and got even more debilitated. And, you know, being exposed just to cologne, or if I was out around traffic, or somebody smoking a cigarette, then it would make me disintegrate and have the disorientation, and the trouble breathing and the great pain, joint pain.
Spelling is hard; numbers are hard. I have dyslexia sometimes now. I always check and double check. I would write an envelope, and it would be returned because I mixed up my numbers. I never had a problem with numbers before. I did calculus and differential equations. If somebody asks me numbers or to spell something, it’s really hard. Sometimes it helps me, I used a little sign language before, so I usually spell out just to help me get something physical to help me get the numbers or letters out. Sorry, I’m getting fatigued, so I’m trying to just ride the waves and hold my energy together.
During the following speech by Alison Johnson, a screen appears showing Jenn Duncan lying flat on her couch having a seizure.
Alison Johnson: Believe it or not, that was Jenn on one of her good days. We had also filmed her the day after a doctor’s appointment. Jenn told us that exposure to air fresheners and diesel fumes in the private medical transport that had taken her to this appointment had caused that temporary but sharp decline in her condition.
Stephen Levin, MD (Mount Sinai Hospital, NYC, Headed study of sick First Responders): Another striking thing is that many of our patients are much more reactive to strong odors than they were before, not always with exactly the same reaction that they’ll experience when they are exposed to cigarette smoke or bus exhaust, but they notice these odors more and find themselves reacting physically unpleasantly to these odors in ways they never did before. I have patients who cannot walk into a department store cosmetic area without experiencing shortness of breath and chest tightness in ways they never did before. I have patients who cannot get on an elevator where someone is wearing strong perfume or cologne without experiencing fairly intense respiratory reactions. We don’t always understand why this is so, but it is extremely commonly reported among our World Trade Center responders and many of our patients say that they are simply unable to wear fragrances themselves or be around other family members, friends, who wear such fragrances because they simply can’t tolerate them.
Alison Johnson: Many people with MCS become so sensitive to fragrances that they virtually become prisoners in their own home, unable to attend church or other worship services, classes, work, or social gatherings because of the fragranced products used by others. To make matters worse, some of those who insist that MCS is just a psychologically based condition state that these people are suffering from agoraphobia, or fear of crowds. That’s as cruel as saying to a paraplegic in a wheelchair, “Too bad you don’t like to walk”
Narrator: Giving up wearing fragranced products can enable someone else to avoid giving up their job. That sacrifice and act of kindness on your part may be well worth making. Minimizing the use of fragranced products in public places and homes will also enable people who have a strong reaction to fragrances to enjoy attending various events and to return to the social life they miss so much.
Alison Johnson: Eight years ago I met our friend Lovye Oesterlin when she moved into Highland Green. A friend called me up and said, “I have a new neighbor who is looking for somebody to attend the Metropolitan Opera Broadcast at the local theater.” And so I was eager to go, so I gave Lovye a ride to the first one, and when I dropped her off at her house afterwards, I said, “I’m really embarrassed to ask you this, but I’m sensitive to perfume, would you mind too much not wearing perfume the next time we go to the opera.” And she was so nice about saying, “Of course, I just won’t wear it.”
Lovye Oesterlin: Yes, I remember that. I had quite a few colognes and perfumes. Some of them were from my sister, who had lots of them, who traveled a lot, and she was always bringing gifts, and so on, so I had to do something with them, so I wore them, occasionally, not always, but occasionally. And so when you asked me not to wear it, and I thought about it because I noticed that some of the women here were not wearing colognes, and I thought, well, there is a problem with allergies, etc., including my husband, who also is allergic to certain things, and I said that might help him also.
I was willing to give up my expensive French colognes for Alison because I realized that friendship is much more important than colognes.
Bennie Howard: Hello everybody. My name is Bennie Howard. I’m the Acting Director of the Office of Disability Policy at the U.S. Department of Housing and Urban Development in Washington, D.C. Federal laws, specifically the Fair Housing Act, Section 504 of the Rehabilitation Act, and the Americans with Disabilities Act, prohibit discrimination on the basis of disability. HUD considers multiple chemical sensitivity to be a disability under these laws.
At this point a screen appears showing Anne Steinemann’s home page.
Narrator: Dr. Anne Steinemann has analyzed the secret ingredients in several leading fragranced products like air fresheners and laundry products. She found significant numbers of toxic chemicals in these products.
At this point a screen appears that says:
Dr. Steinemann’s website, www.drsteinemann.com, contains extensive information about her studies.
Narrator: Dr. Steinemann’s website, www.drsteinemann.com, contains extensive information about her studies.
Narrator: In the last couple of decades, there has been a rapid and alarming acceleration in the number of people reporting that they have developed chemical sensitivity. In 2009 Professors Stanley Caress and Anne Steinemann published in The Journal of Environmental Health the results of their national prevalence study of chemical sensitivity. In this national prevalence survey, 3.2 percent of the respondents said that they had been medically diagnosed with MCS. This result suggests that over ten million Americans are suffering from multiple chemical sensitivity. That's a number greater than the population of the state of Michigan. Journalists often refer to MCS as a rare condition. That’s hardly the case.
Alison Johnson: With so many people now suffering from MCS, it is important that the media treat this issue in a responsible way. The millions of Americans struggling with this condition are ill served by the propensity of the media to rush to Arizona to film and interview members of a tiny community of fewer than two dozen people who constitute extreme cases that are not representative of the millions of people who are chemically sensitive. This kind of one-stop shopping on the part of journalists and filmmakers may be convenient, but it results in a very distorted view of people with MCS. Depicting these outliers in a way that makes them look weird and sensational may advance the careers of the photographers, filmmakers, and journalists, but at a great cost for the millions of people with MCS struggling to get their family, friends, and physicians to understand their condition, not to view it with disbelief.
Unfortunately, the suicide rate among people with multiple chemical sensitivity is far too high, and the failure of others to understand MCS is a factor in many of these suicides.
Alison Johnson: One particularly poignant case is that of Abner Fisch. Abner was a chemical engineer who worked for 3M until chemical exposures on that job made him so sick that he had to quit. Abner later testified to a government committee in Santa Fe, New Mexico, about his long search for a workplace atmosphere that he could tolerate. In my book Amputated Lives: Coping with Chemical Sensitivity, I recorded Abner’s description of the twenty different jobs he tried in his long struggle. Here is the way Abner described one of the last jobs he tried:
I was flipping burgers and running a cash register, and I got a very good performance evaluation after two months and after four months, but when they hired new employees who wore perfume and kept scheduling me with them, I had to resign.
Six months after he gave this testimony Abner took his own life.
As chair of the Chemical Sensitivity Foundation, I often receive e-mails from desperate people, and it’s not easy to know what to reply. Here’s one of them:
I have been plagued with multiple chemical sensitivities for about fourteen years, ever since the carpets in my home were cleaned and treated with a stain-repellent chemical.
My biggest concern is finding an occupation and/or workplace for someone with my problems. I don’t know if this is something that your organization can help me with, but I’m at my wit’s end and don’t know where to turn. I need and want to work; I have started and had to quit so many wonderful jobs in the past four years due to becoming sick in the workplace.
If you have any information on how an MCS person can obtain gainful employment, I would be deeply grateful.
Cathy Gustafson: My name is Cathy Gustafson, I’m a registered nurse, and I’m the director of assisted living at the Highlands in Topsham, Maine. We’re an assisted living community, and we do maintain a fragrance-free environment for the well being of our residents that live here as well as the staff that work here. Over the years I’ve been able to see what the result of lots of chemicals can do to somebody, especially somebody with a breathing disorder like COPD or asthma.
Growing up I had a brother who had asthma, and we always had to be very, very careful about what scents and environmental stimulants were around him because it could trigger an asthma attack. And if you’ve never witnessed an asthma attack in a young person, it is heart wrenching. So it’s been important to me to prevent other people from having that same experience. It’s very easy for smells in our environment to trigger an episode for somebody who has a respiratory disorder. Even myself, if I go to a department store and there’s a lot of fragrances, some of those aisles can be pretty smelly. And I can even find myself starting to struggle with my breathing a little bit, and I don’t have any kind of medical conditions that should bother me, but just more proof that those chemicals aren’t good for any of us.
In an assisted living environment or in a nursing home, there are a lot of people who struggle with incontinence, and one of the things that’s the result of that can be odors. We certainly don’t want somebody to walk through the front door and be greeted with unpleasant smells. So it’s important for us that we make sure the residents are taken well care of. That will minimize the odors. But if we do need to use some kind of a cleaning product, we go with something that’s fragrance-free and also something that’s green, so it’s also good for our environment. That’s very important to us, so it mitigates the smell but it doesn’t negatively impact our environment at the same time.
I would encourage other assisted living communities and nursing homes to explore the option of going fragrance free in the environment. It’s good for the residents, it’s good for the staff and for the visitors. We don’t want to subject anybody in our community to have an exacerbation of their disease because of smells that we’ve put in the air, so we’ve eliminated air fresheners and all chemicals that we use are fragrance free. It was not a difficult process to become fragrance free, so please, I ask you for the benefit of the community that you work in to explore that option. 02
Narrator: Everyone should have the right to work or access medical facilities in an atmosphere as free as possible from fragrances that cause them health problems.
The film ends with a succession of photos of the chemically sensitive people who were interviewed, followed by another brief clip of the footage of Chris Markam gasping for breath.
A Johnson/Startzman Film
Produced & Directed by
Artistic Director &
Ron Crafts and Brien White
Major funding for this film came from Robert Weggel,
with additional support from Rebeca Barclay, Marilyn Cleveland,
Richard H. Conrad, Mary Gobell, Clare Johnson, Margaret LaClare,
Joan Martin, L. Christine Oliver, Judy Sanderson,
John Schwindt, Edward Speidel, Amy Svoboda,
Jean Switzer, Peggy Woolf, and Mickie Zuckerman.
Please visit the website of the
Chemical Sensitivity Foundation
to donate to the cause of promoting
To order this film or other Johnson/Startzman
films and Alison Johnson’s books on Gulf War Syndrome,
9/11, and Multiple Chemical Sensitivity, see
© 2016 Alison Johnson/Richard Startzman
All Rights Reserved
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