Myth: People who have negative reactions to fragrances simply have allergies. Why is it necessary to structure my life around someone’s allergies?
Fact: Multiple Chemical Sensitivity, or MCS, is a progressive neurological disease that can result in death. Asthma, which often causes sensitivity to fragrance-containing products, can also result in death. Whereas people with allergies might be inconvenienced or temporarily ill from exposure to an allergen (although some allergens are life-threatening to some people), many people with MCS suffer extreme harm from chemical and fragrance exposures, sometimes resulting in progressive and permanent brain and organ damage. Although filter masks, portable oxygen, and other measures might help those with MCS, they do not prevent most exposures.
Myth: People with MCS don’t like the smell of fragrances. Why can’t I smell nice if I want to, or just use scents in my own air space?
Fact: MCS is not a smell preference but a recognized disability. Fragrances aren’t merely “nice smells” and they don’t stay confined to an air space. For example: dryer sheets, which were found in an EPA study to contain chloroform, can contaminate whole neighborhoods. Fragrances contain carcinogens and neurotoxins that cause severe health problems in susceptible individuals, and these chemicals linger on skin and clothes for weeks after use. According to the Environmental Health Coalition of Western Massachusetts, 95% of the chemicals used in fragrances are neurotoxic, including “benzene derivatives, aldehydes and many other known toxins and sensitizers capable of causing cancer, birth defects, central nervous system disorders and allergic reactions.” The EPA has found that asthma, fatigue, immune system damage, kidney and liver damage, cancer, and brain damage are associated with the chemicals in fragrances.
Myth: I use shampoo from the health food store, or products labeled “natural,” and I don’t wear cologne, so I am scent free.
Fact: “Natural” is a pretty loose term these days (see “The Ever-Unstable World of Labels“). The synthetic fragrances that contain the toxins mentioned above are found in most body care products, including many at the health food store labeled “natural.” Even some items labeled “unscented” contain a masking fragrance, which is a synthetic fragrance to cover up the smells of the product. Essential oils are also a problem for chemically sensitive people, and they can be impure — meaning they might contain solvent residue from extraction, or pesticide residue. Many essential oils also contain seizure-inducing compounds, a problem for people with MCS whose brains have lowered seizure thresholds. Using natural products does not make you scent free unless you buy natural products labeled “fragrance free” or “unscented” (without masking fragrance or toxic additives).
Myth: But I really LIKE my scents. Can’t we just negotiate a situation where I get to wear some scents so everyone wins? Why do I have to make all the sacrifices?
Fact: People fall into the “negotiation” trap a lot with the disabled, particularly those with non-apparent disabilities. Imagine how ridiculous this argument would sound if you used it on someone in a wheelchair: “Hey Bob, can’t we just negotiate and build the ramp halfway up the stairs?” There’s no halfway about disability. Invisible disabilities may seem vague, negotiable, or flexible to you, but they are not to the people who are disabled. People with invisible disabilities have experienced devastating, life-altering changes. They can’t be flexible about their disability any more than a person with a spinal cord injury can get up and walk on command. There’s no negotiating when it comes to chemical injury: if you expose someone with MCS to scents, they will experience physical damage that can potentially be irreversible or progressive. As Carolyn Gage writes, “Forget your assertiveness training, your skills at compromise, or your ‘getting to yes’ negotiating expertise. If I need to leave an environment because it is toxic to me and you want to stay, it is not a solution for us to stay fifteen more minutes. Those fifteen minutes may result in my spending the next two days in bed.”
Myth: There are other places with people with MCS to congregate, so why do they have to be in this venue?
Fact: The sickest MCS patients are barred from public parks (where pesticides and exhaust are present), stores, churches, medical facilities, schools, street fairs, homeless shelters, public transportation, courthouses, libraries, airplanes, public meetings, and almost everywhere else you can imagine. They are often driven out of their own homes. Many end up living outdoors or in their cars. A survey in Western Massachusetts found that 57% of the people in that area with MCS had been homeless at some point in their illness. People with MCS are often gradually pushed to the margins of society until they live nomadic lives, traveling to remote areas where they won’t be injured by the chemicals most people use. “One woman in my most current study sent me a drawing of her ‘home,'” wrote Pamela Gibson, PhD, “which consists of a wire mesh cage to sleep in. Because she must sleep outdoors, she has constructed this cage to protect herself from dogs and wild animals. Her home is literally a five-foot cage.”
Myth: If I don’t wear scented products on the day I visit my chemically sensitive friend, I’m set.
Fact: Residual fragrances from hair gel, shampoo, soap, detergent, lotion, makeup, hairspray, cologne, and other scented products will stay on skin and hair for weeks or months. Synthetic fragrances are designed to be “sticky,” which is why commercials brag about how long clothes will smell “fresh.” As a proactive step to protect yourself and the environment, it’s best to give up toxic fragrance-containing products completely. Since the fragrance industry is protected by secrecy laws and not required to prove the safety of their ingredients, you will be helping yourself as well as others.
Myth: I won’t get MCS. I love the smell of fragrances and they make me feel great.
Fact: Most people with chemical sensitivities were injured by a chemical assault of some kind (i.e., pesticide treatments in a home) and then developed chemical sensitivities. A person who has not yet been afflicted is certainly not immune. In fact, most people with MCS had many exposures before getting sick, and appeared to be immune until their bodies broke. Commercials have managed to normalize the practice of slathering damaging chemicals on the skin and hair where they might be readily absorbed — some who use these products may form the next generation of people with MCS.
Myth: If a chemically sensitive person got sick from my products, that person would tell me.
Fact: People with MCS are so disenfranchised, and so used to be ridiculed or ignored, that they may not ask for what they need. Furthermore, they won’t be able to get close enough to you to ask, since your scents could be making them sick. People with MCS also experience cognitive and neurological impairment when they are exposed to toxic products, which means they may not be able to think clearly enough to form the words to even express how sick you are making them — their speech may become slurred and their word-finding abilities and memory may be obstructed. Just because a person with MCS isn’t telling you that you are too scented, it doesn’t mean that you aren’t making that person sick.
Myth: It is too hard to make an event fragrance free.
Fact: In some places, particularly in Canada where there are many scent-free schools, hospitals, and public venues, fragrance free policies have been coupled with educational efforts to make a more healthy environment for everyone. Most people with MCS live in devastating conditions because the “too hard” argument is used. Every turn toward social justice is initially hard, but it gets easier as people create movements and promote peer education. It does take extra work to plan a scent-free event, but remember, people with MCS and other disabilities don’t have a choice in these matters. Others do have a choice. If they don’t want to give up scented products for the sake of a scent-free event, they might miss one event, but that event will likely be the only accessible event for a long time for most people with MCS. If you plan a scent-free event, you will also be setting a precedent for the next event.
Myth: Asking people to buy a bunch of new products to be scent-free is classist. People can’t afford to go out and buy new products.
Fact: Being scent-free can be achieved through the use of common household items such as baking soda, gelatin, olive oil, and unscented glycerin soap. Also, you’ll most likely be fighting against classism if you stand up against ableism. The working poor in our country are often the most likely individuals to be exposed to the type of occupational hazards that tend to cause MCS, such as pesticides, solvents, and industrial chemicals. Chronic Fatigue Immune Dysfunction Syndrome, which can cause MCS, also disproportionately afflicts people who are working class. Veterans of the first Gulf War, who were exposed to large quantities of damaging toxins, represent perhaps the largest cluster group to be afflicted by MCS. In addition, disability tends to put people into a state of forced poverty. Social Security benefits are sub-poverty wages, and disabled individuals who receive them are often poor.
Myth: Why should everyone have to make a change to help a small minority?
Fact: That statement is a tired historical argument used to fight any attempt to end discrimination against any minority. According to the Environmental Health Coalition of Western Massachusetts, one in five people experience health problems when exposed to fragrances, and 72% of asthmatics have adverse reactions to perfume. This means that an event or venue that doesn’t have a scent-free policy could be excluding or harming many of those who might attend. In addition, the Fragranced Product Information Network reports that 17 million people have asthma, 35 million have chronic sinus problems, 9 million have rhinitis, 25 million have migraines, and 1-2 percent of the population have skin allergies — all can be negatively affected by fragrance. People with chemical sensitivities are shoved to the margins of society where they live in various states of chemical exile. To get a sense of how some MCS folks live, check out the story of young Jonathan, one man with CFIDS/ME and MCS, and numerous MCS homeless living in the Southwest. These stories may change your viewpoint on accommodating fragrance-sensitive individuals.
Myth: Why should I have to be part of a radical political movement I’m not comfortable with, due to a few militant activists? What if I just give up scents for a day as a show of political solidarity?
Fact: People with chemical sensitivity don’t want to make a political statement: they want to survive a world of constant chemical assault. They want basic rights and accommodation, not political solidarity. It’s great to put pressure on corporations by boycotting toxic products, but wouldn’t you rather accommodate those who desperately need it? Also, almost every bit of activism around chemical sensitivity has been done by chemically injured people who are trying to save their own lives. Few of them have the energy to be militant. They are too ill to testify before congress, march in a congested city, stand in front of a crowd, or do any other action to fight for their own rights. If you want to show political solidarity, throw out your scented products and speak up when you see barriers to access. Certainly, chemically sensitive people will thank you if you go the extra mile and become an activist.
Myth: People with MCS seem angry about every accidental slip-up I make around scents, and everything seems to make them sick. Aren’t they overreacting? It’s just laundry detergent.
Fact: When you “accidentally” forget to not wear scents or when you use chemical cleaners around a person with MCS, you have just “accidentally” inflicted physical harm. You also unwittingly give the message that a “fresh clean scent” is so important that you don’t care if a friend spends months in bed because of it. Nobody should have to choose between isolation and physical injury. Don’t make people with MCS fight for their safety. They are used to coping with denial, anger, combativeness, and outright aggression when they ask for accommodation, and they need you as an ally. And yes, people with MCS are reacting to almost everything — physically — because, sadly, our society is so laden with chemical products that it is nearly impossible to avoid them. It’s painful for people with MCS when others choose synthetic products over the value of their lives. Instead of pathologizing the reaction of someone with MCS, why not ask yourself why you would choose the contents of a plastic bottle over a person you love? Why not ask how you would feel if you had to give up your job, your relationships, your house, your physical functionality, and your security in the world instead of just your hair gel? Why not ask what you can do to create a better society for victims of chemical injury?
Some information in this article is from the brochure, “The Hidden Dangers of Fragrances” from the Environmental Health Coalition of Western Massachusetts. A free sample brochure can be obtained by sending a SASE to: P.O. Box 187, Northampton, MA 01061-0187
By Peggy Munson. This article may be reprinted and distributed freely.