Messaging when educating the public about environmental illness (MCS or EHS)

 

 

So you’d like to raise awareness or educate the public about environmental illnesses (MCS or EHS). Or you just wonder why we have such a bad public image. Read on. Here are some things to consider on what to say and how to present it. We also give examples of how the public relations industry manipulates the public.

 

Keywords:    environmental illness, multiple chemical sensitivity, MCS, electromagnetic hypersensitivity, EMR Syndrome, activism, public relations, advocacy, messaging, tactics

 

 

About the picture

The picture above is a scene from the film Safe about someone who gets sick with MCS. Is she having an asthma attack or is she freaking out? What is the intended message? More on this later.

 

Perception is everything

We all like to think that if you put the facts in front of people, they will come to a logical and reasonable conclusion, and change their opinions accordingly. It doesn’t work that way. Unfortunately, many other factors are at least as important as the facts, which is a major part of what this article is about.

 

If we, the environmentally ill, want to improve the public perception of who we are, we will have to learn this lesson.

 

Billions of dollars are spent every year in America on marketing and public relations. The global expenditure is about a trillion dollars. This is to convince people to buy overpriced brands, goods they don’t need, or to vote for certain politicians. Even countries and dictators pay for having their public image brightened. If you ask people how much they are influenced by these things, they will nearly always claim it is very little. When pointing out to them that billions of dollars are spent because these methods work, they usually say that influences other people, but not themselves (a phenomenon called the “third person effect”).

 

Clever messaging that focus on people’s emotions can sink or float a politician. One classic example is the presidential candidate Michael Dukakis, whose 1988 campaign was sunk by two messages: he was blamed for the early release of the prisoner Willie Horton, who soon after murdered someone. Dukakis had nothing to do with the release, which was done under a law already on the books before Dukakis became governor of Massachussetts. But the opposite campaign kept saying it was his fault, so the voters believed it.

 

Repeat a lie often enough, and it becomes the established “truth.” Most people have a hard time believing they are being lied to.

 

The other thing that sank the Dukakis campaign was a picture of him riding in a tank, which he did as a photo-op for the press. But the seat he sat on was too low for him, and he wore a steel helmet that was too large. That made him look dopey in the pictures taken by the journalists. He did not look “presidential.”

 

In 1997 Apple struggled to sell their computers, as they cost much more than PCs running Microsoft Windows 95, and at that point were not a superior product. The company hired an advertising agency to turn things around, and they did with a single campaign. It focused on people’s sense of being unique and individual. The campaign slogan was “Think different” and showed images of Albert Einstein, Thomas Edison, and Mahatma Gandhi. People wanted to feel like those three amazing people, and sales of Apple’s computers skyrocketed. The boon financed development of the products that then made the company such a success.

 

In 1960, Richard Nixon and John F. Kennedy squared off in the first-ever televised presidential debate. Polling afterwards showed that the majority of radio listeners thought Nixon won the debate. But the majority of TV viewers thought Kennedy won, simply because he presented himself better visually.

 

Another classic story is when the tobacco industry wanted to boost sales by convincing women to smoke in public. It hired a group of young women to walk in the 1929 New York Easter Parade while smoking cigarettes, with banners about women’s rights. From then on, their message was that independent women smoked. They used that for many decades since, and it worked. The guy who came up with the idea became an adviser to the Nazi propaganda machine in the 1930s.

 

There are of course many recent examples of how public opinion is manipulated, but listing them would upset some readers. Nobody likes to be accused of being manipulated.

 

Some of the methods used to manipulate people can also be used to legitimately inform the public, including about environmental disabilities.

 

It worked once

For decades, MCS activists have tried to tell the world “we exist, we should be allowed to be here too.” It gained traction in the early 1990s. Mainstream media was sympathetic, some talked about how fragrances might become uncool and even banned.

 

It also helped that there was a rising concern about environmental pollution. The earth itself was named “Planet of the Year” in 1988 by TIME magazine (instead of Person of the Year).

 

The tabloid magazine New York Post had a cartoon about fragrance bans in its May 8, 1995 issue. The cartoon showed a dolled-up woman walking into a catholic church. A priest wards her off with a cross while holding his nose, and a police officer approaches to make an arrest.

 

 

That was very threatening to the tobacco and chemical industries. Their anti-MCS campaign quickly turned that around. The media became hostile, the public was told in various ways that people with MCS were not legitimate and had no right to restrict other people’s use of cologne, etc. We are still living with the effects.

 

Another problem was that people don’t like to be told they can’t use a certain product they feel attached to. The syndicated columnist Walter Williams loosened a tirade that ended with these words:

 

I know what I’d do to one of these multiple chemical sensitivity wackos attempting to make me wash off my aftershave..

 

Entertain, not educate

There is an old saying that you can drag a horse to the water, but you can’t make it drink. The same goes for educating the people about environmental illnesses.

 

Most people simply want to be entertained. They are not interested in being educated about anything. For them to pay attention, your messaging must be either novel, exciting or pleasantly entertaining. The educational part has to be packaged inside, so it is not obvious.

 

The problem is that what is novel or exciting is usually not a good way to educate the public about MCS or EHS. Sensational stories do not garner people’s sympathy. They create harmful stereotypes.

 

Humans, just like everybody else

It is really important that people understand the EIs are just regular people who happen to have a disability through no fault of their own. That makes it a lot easier to sympathize and accept.

 

The diseases strike people regardless of their personality, what their polical leanings or religious observances are, or how much money they have.

 

Most people with MCS or EHS have the milder versions. They have jobs and live pretty much normal lives, as long as they reduce their exposures. Many of them live “closeted,” and do not tell others about their disability, because it seems “weird.” It is often simply thought of as a private matter, just as people with other invisible disabilities often don’t talk about their problems.

 

But these cases are not what people think of, if they have even heard about environmental illness (EI). They will think about the extreme cases, which are the only ones the media talk about. It is a lot harder to sympathize with those scary stories. More on this later.

 

Paragons needed

There is a terrible double standard: if someone has a message which challenges current dogma, that person must be perfect. The people who try to discredit the message are not held to the same standard.

 

This means that when presenting people with the illness in print or video, it is important to mention some admirable aspects of them. If doing a video, or an article with pictures, it can work great with something visible, such as artwork. Or show an old picture from climbing a mountain or such endeavor. Be subtle, or it’ll look like propaganda.

 

People who are accomplished in life, such as doctors and engineers, appear more believable since they are harder to accuse of “wanting to be sick” or being “technophobes.” In America, war veterans work great too, especially with medals on their chests.

 

It can also be helpful to show that the EIs are “the good guys,” who are good citizens, who help each other, etc. We are much more than our disability, just as people in wheelchairs are much more than their chairs.

 

Appearances

Appearances matter. People decide whether to believe you from what they see. In many cultures, a man is more believable than a woman. That is one reason why so many diseases that mostly affect women are slower to be accepted, and slower to receive research funding. Past examples include Alzheimer’s, endometriosis, and autoimmune diseases. Today that means MCS, fibromyalgia, and CFS/ME.

 

On American television, the TV journalists and anchors are all good-looking, and there are very few older women. The broadcasters put the kind of people there they know viewers trust and like to look at, so they don’t switch to another station.

 

Even the left-wing magazine TIME, which in issue after issue talks about people who work to make the world a better place, is guilty of that. They do not show pictures of old or homely activists. They show young telegenic people.

 

It is a common instinct that somehow good-looking people are more trustworthy, a fact taken advantage of by many charlatans.

 

A great many people have campaigned about climate change. For years, the media chose to focus on just one person: Greta Thunberg, a tiny, cute, Swedish teenager at the time. As she got older, she became less telegenic, and the media stopped paying attention.

 

Standing alone

A single person, all alone, is easy to write off as just a crank. It is visibly more powerful if somebody else is present, even if silent, to “stand behind” your message.

 

Politicians love to have supporters silently stand behind them on the stage.

 

Storytelling

We humans are a social species; we like to interact with other humans. We like to watch other humans interact, especially humans that seem familiar to us, even if they are just actors on a screen, social media personalities or characters in a book.

 

Dry facts do not reach people like a good story does. A good story is one that grabs people’s attention, while talking about something they can somehow relate to. This can be true stories or fiction.

 

It is important that the story starts in a place people can relate to and understand, before going into what is new territory, so they are less likely to reject it. It helps if the people they see or hear about are similar to themselves, or people they can admire (accomplished in life, good looking, etc).

 

Fiction

Fiction in the form of novels, film, and theater can be a powerful way to raise awareness and educate the public in a way that is also entertaining, so it has a wide appeal. It simply can reach a much wider audience than documentary films and factual books.

 

Fiction has been used that way many times already. Some of the classics are the book Uncle Tom’s Cabin and the TV series Roots, that both broke new ground talking about slavery. They both told stories that people could emotionally relate to, instead of presenting the dry facts.

 

The Amish is a religious community in America that eschews electricity, cars, and other modern conveniences. They too have been misunderstood and sensationalized by journalists and others. They have produced several romance novels and murder mysteries that are set in their community, so outsiders can learn about them without journalistic hype.

 

Fiction gives the writer much more freedom to put together a compelling story, than can be done with memoirs, journalism or documentary film.

 

Good fiction can only be written by someone intimately familiar with the EI world. Outsiders have tried, but the results were rarely educationally helpful. A particularly bad example is the TV series Better Call Saul.

 

Not all negative

People can only take so much negative material. They’ll wear out if all they hear are sob-stories, whether it is about people living in cars out in the desert, famines in Africa or bombed-out houses in a war zone.

 

There need to be some glimmers of hope too. That can be stories about people with EI who are able to stay in the workforce, and how they managed to do so. It can be profiles of activists doing good work. Or simply human stories about people, where the disability is only mentioned as an aside, and not the main focus. There are many other possibilities. Hollywood film almost always end well, they do that for a reason.

 

Again, the message should be that these are regular people who got an illness through no fault of their own, which also happens to be the real truth.

 

Avoid other issues

Accepting the realities of EI is a mouthful for a lot of people. The more things you challenge their minds with, the more likely they are to balk at all of it.

 

If you promote an issue they have already decided not to accept, you’ve lost them. They will then doubt anything you say about any other issue.

 

At at minimum, avoid bringing in other controversial topics, whether it is animal rights, climate change, conspiracy theories, religious affirmations, civil rights for your favorite minority or whatever. (The exception is if you target an audience you know is all in agreement with you.)

 

If you have other causes you like to campaign for, go ahead, but keep things separate.

 

The foreword to the 2022 book WiFi Refugee promotes no less than five conspiracy theories that are not relevant to what the book is about. Only two of them are even somewhat related (“Spanish flu caused by radio waves” and “Covid caused by 5G”), but are far out of the mainstream. How many readers dropped the book after reading that foreword?

 

Imposed threats seem worse

People are much more willing to consider a threat that is imposed on them, than one they see a benefit from. Even if the “beneficial” threat is worse than the one imposed on them.

 

When wireless electrical meters (“smart meters”) were rolled out, many regular people didn’t see any benefit to them and opposed the installation, even though they happily used their smartphones all day long.

 

The utility companies tried to make the meters seem beneficial by touting the ability for people to monitor their electrical usage from their smartphones, and possibly save some money. The claims fell flat.

 

People must feel empowered

It is important to a lot of people that they feel in control. They like to be in the driver’s seat of a car, rather than being a passenger. Animal studies show the same thing: monkies and pigeons also like to have choices, even when their choices all produce the same reward (a morsel of food).

 

Consequently, people resent not having a choice, such as how their taxes are spent, whether to wear a mask in a store or if their next car should be electric.

 

This is another reason why some people oppose cell towers, while they use cell phones and Wi-Fi. The difference is that they have control over the things in their homes.

 

Accepting MCS and EHS will be difficult, as long as it means people feel their freedom to choose is taken away from them, such as which personal care products to use, or whether the computer at their desk use a cable or a wireless transmitter.

 

It may help to let people know they still have choices, such as by pointing out there are many scent-free personal care products available.

 

Toxic needs to become uncool

It used to be cool to smoke. Movie stars used to light up in the old films. Today smoking is socially unacceptable in many places.

 

It need to become uncool to do self-harm, and harm others, with toxic products.

 

This is a big project that needs to be done gradually. An obvious place to start are the strongest perfumes that most people find too intrusive on their senses.

 

Hollywood needs to be convinced to help out. That will not be easy.

 

Another way is to do blood tests to show how the chemicals actually enters the body, whether through the skin or the lungs.

 

Scare tactics

It can be tempting to use scare tactics, when people just don’t seem to “get it.” We can point out that the illness can hit anyone, that “you too can get this” or “your children may get this.”

 

We might even say “everybody is affected,” which may be true. The rise of allergies, cancers, infertility, autism, and early puberty all seem to have environmental causes, though science is not sure which, how, and why.

 

Be careful with such scare tactics. There is an ethical issue here; we don’t want to scare people too much.

 

It can also easily backfire. The idea that they can get the illness themselves is too scary to think about, so people protect themselves by putting up a wall. The whole thing is just ignored. You’ve completely lost them.

 

The marketers rarely use scare tactics. When is the last time you saw “buy this product or else”?

 

Don’t repeat the lie

The more people hear a lie repeated, the more believable it is (remember Dukakis). That includes when refuting the lie. The logic is that there must be some truth to the lie, since it is repeated so much (not necessarily, but that is how people think).

 

The neuro-scientist and linguist George Lakoff published the book Don’t think of an elephant. The title comes from a thought experiment asking the reader to NOT think of an elephant. Once asked not to think of something, it is impossible to avoid thinking of it. His point is that if you use the words and framing of your opponent, you actually reinforce what your opponent just said. You have to use your own words and frames to reinforce your own message.

 

If an opponent insists on saying all people with environmental illnesses are “self-diagnosed,” don’t use that word in your reply. Don’t say “they are not self-diagnosed,” but say “many are actually diagnosed by physicians.” Or even better: “I am diagnosed by a physician, so are all my friends.”

 

What does it look like to regular people?

Whatever messaging you put out there, whether on social media, film, art, radio interviews or written materials, consider what it looks like to outsiders – the people who have little or no understanding of what our world is like.

 

Try to put yourself in the shoes of a regular person and then look at the materials with their eyes. How might they interpret what they see?

 

It is important not to appear “strange,” at least not without a simple explanation people can understand. Otherwise, they’ll simply apply the “freak” label and you’ve lost them.

 

Much of what we have to do to manage the illness will seem strange to people who don’t understand why.

 

Examples of things that are quite reasonable to the EI, but can seem strange to people who do not have the illness:

 

These are just some examples. Identifying such things are not so easy, since they are part of normal life to many of us.

 

Explain what is unfamiliar

If you show or talk about things that are unfamiliar to mainstream people, you need to explain them. Otherwise, people will come up with their own interpretations, which far too often will be wrong. Your explanation should not be too subtle, or it will be missed.

 

An example is the 1995 film Safe, written and directed by Todd Haynes. It shows a lot of unexplained things, which the audiences usually interpret in a sinister way.

 

At one point, the main character, Carol, has an asthma attack (see picture at the top). The next scene, where she visits a doctor, does provide a subtle clue that it was an asthma attack (she says she had asthma as a child), but that is too subtle. The review in TIME magazine shows a picture of that scene, with the statement that Carol “freaks out on the 20th century.”

 

The film offers even fewer explanations on many other unfamiliar things. Haynes wanted to let the audience make up its own mind. But he left the viewers with too little information, so they usually concluded MCS was all a mental illness. (Haynes did much better in his later film Still Alice, about Alzheimer’s).

 

Another example is a 2016 video made by The Guardian. A person interviewed says he is sickened by printed materials. The camera then focuses on a calendar and some pictures hanging on the wall. Many social media commenters took that as an “inconsistency” that “proved” MCS is not real. They were not told those things had been extensively aired out, so they were inert.

 

Keep it simple

If your messages are directed to a general audience, you need to keep it simple. If you are not sure, the default should be to keep it simple. Even highly educated people can be pretty dense about some things.

 

You don’t want to use words people do not understand. That makes us look cliquish.

 

Avoid saying things that go above their heads. If people do not understand something, they will assume it is of no importance. They will not think that you are so smart, so you most know a lot and we just have to take your word for it. It doesn’t work that way.

 

Repeat, repeat

A message has to be repeated to settle in people’s minds. It is best if they hear it in different ways, in different settings, and from different people. This is difficult to do with limited resources. Be inventive.

 

Attention

Catching and holding people’s attention is not easy. If your message does not appear interesting right away, people will move on.

 

Studies of people looking at websites show that placing a picture at the top of the page doubles the chance that people start reading the text.

 

Many writers start with some sort of drama, whether it is a book or an article story. That gets people to stay. Just be careful not turning it into a freak show, which is easy to do when presenting MCS/EHS stories.

 

Many people’s minds get “tired” and starts wandering after a page or two. If you are trying to reach a general audience, keep it short. (This article is not for a general audience, only readers with a genuine interest will get this far.)

 

The extreme stories

The press loves to bring the most extreme EI stories they can find: An old man who has lived in a travel trailer in outback Colorado for decades. Two women who live in a cave in France. A flight attendant who now lives in a tent on a remote ranch in Arizona. (All real examples.)

 

Offer journalists ten people to interview, the one they will focus on will be the most extreme case.

 

Showing the world the worst cases will not elicit sympathy. The response will likely be as when encountering a drunk bum on the street: hurry past the unpleasant display with averted eyes, the scene quickly forgotten.

 

Or the reaction might be a defensive “these are freaks, that can never be me.”

 

A study documented this effect by finding people were more likely to donate to a medical fundraiser when they were shown a picture of a smiling young woman, than when shown an obviously very sick man in a hospital bed.

 

The extreme cases should not be denied, but by focusing on them, regular people may believe they are the norm. There are many more people with environmental illnesses who have a job and a more normal life. The general public can better relate to lives that don’t look like a scary car wreck, and thus find them more believable.

 

If people can’t identify at least some with the stricken, it is too easy to label them as “others.” They are not members of the tribe and not worthy of sympathy.

 

We should not hide the extreme cases, but it should be made clear that those are the worst cases on a wide spectrum possible. (Many other diseases also have wide spectra, such as covid.)

 

The worst cases will need more explanation than may be possible in a typical media story.

 

Cartoon satire

Satirical cartoons can be a very effective way to get a message across. It is brief, it is visual, it takes very little effort to get the message, so it can reach a lot of people who would not read some story.

 

Satire is such an effective media that authoritarians crack down on it sooner than on other forms of criticism.

 

Making good cartoons is an art that is not easy. It must be readily understandable to regular people.

 

Photos

Pictures is a powerful way to reach people. They convey a lot of information in the blink of an eye, and affect people emotionally in a way text cannot.

 

Neural studies find that positive images elicit more sympathy than negative images. Angry faces are a turn-off. On the other hand, displaying a group of laughing people may get some viewers to think that these disabled people seem to be having too much fun.

 

Another study found that showing a picture of a deserving person elicits the most sympathy, regardless of whether the name of the person is shown. Displaying pictures where the face is blurred or in silhouette do not garner as much sympathy as when the face is recognizable.

 

The surroundings in the picture are as important as the object of the photo. They can set the tone of what you are trying to say with the image. Make sure things look tidy and not cluttered or depressing. Good photography is a whole art in itself.

 

Little details

Small visual details can help in subtle ways to convey your message. When two heads of state meet and shake hands in front of the press, it is a highly choreographed spectacle. The person to the right appears more powerful on the picture, because of the stance to shake hands (with the right hand).

 

Look at any advertising for watches. Notice how the two hands are always pointed up, to make a smiley face.

 

Likewise, little details can make a difference when informing about environmental illnesses.

 

Don’t take the bait

People from the other team may try baiting you into discrediting yourself. They try to make you angry and “fly off the hinges,” or to goad you into saying something nasty about some company or person.

 

It can happen in person or online. The purpose is to make you look nutty in the eyes of whomever else is reading or listening, including journalists.

 

Don’t take the bait. Say “that is not what I am saying.” Change the subject. Take a deep breath. Don’t give in.

 

Deflection

A method commonly used by politicians is to redirect the attention of the audience, especially the media, when confronted with some issue they’d rather not respond to. There are many versions, from attacking the credibility of the person who brought it up, to staging some event that get everybody’s attention instead.

 

First impressions stick

The first time someone hears about a new issue, that impression tends to stick. They create a stereotype and then apply it from then on. People do not like to change their opinion, once they have one.

 

Remember the saying: “You never get a second chance to make a first impression.”

 

That means being proactive on educating the public is much better than reacting to some media attack piece.

 

A long-term strategy is to focus on reaching younger people, who may not have heard about us before.

 

Expose the lie before it is told

This is rarely possible, but if you ever get advance warning that the other side is planning to publicize some lie, it can be very powerful to expose it ahead of time.

 

At the start of the Russian full-scale invasion of Ukraine in 2022, the intelligence agencies were able to let the world know that Russia was planning to stage a fake “massacre” in the Donbas region, using actors. This was to provide an excuse for the invasion. When the fake event did happen, the world media largely ignored it.

 

Psychologically, if people are told in advance that a lie is coming, that will be their first impression, and it will inoculate them to the lie.

 

If the world wasn’t warned about the staged “massacre” ahead of time, any later denials would not have worked as well. The first impression would be the atrocity was legitimate. And it would have taken time to investigate, so the initial impression would have settled in people’s mind.

 

You may get lucky with some advance warning. Sometimes there are insiders who harbor sympathy for the little guy, so they tip you off.

 

Or, if you talk to someone who has never heard about MCS or EHS before, you could tell them there is a sinister campaign to falsely portray us as lunatics. Just don’t do it early in the conversation, as you may then be labeled as a conspiracy buff.

 

The meaning of words

Words can have positive and negative meanings. In the United States, some people say “illegal immigrant” while others say “undocumented migrant,” thereby signaling what they think about that issue.

 

The people who want to portray MCS and EHS as illegitimate call them “idiopathic environmental intolerance” (IEI). Idiopathic means “unknown cause,” which distances the illnesses from the chemical and electrical triggers. Idiopathic also has nearly the same meaning as “psychosomatic.”

 

This name was created in 1996 at a scientific meeting in Berlin that was stacked with MCS-opponents. The same people have since many times claimed it is the name accepted by the World Health Organization, though if you go to the WHO website it does not show up in searches.

 

Within the EI community, there have long been a dissatisfaction with any name that includes the word “sensitivity.” To be “sensitive” is often equated with being a wimp. It does not convey how profoundly the disease affects someone, at least those with the severe cases. “Hypersensitivity” is somewhat better. A newer name for EHS is EMR Syndrome.

 

At the moment, MCS and EHS are the dominant names, and are used in several languages. Using the acronyms, rather than spelling them out, at least hides the dreaded s-word.

 

Accommodating people with MCS or EHS may mean curtailing the use of fragrances and wireless devices. When talking about that, it is best to avoid words that can produce knee-jerk animosity from people suspicious of any sort of government control. Words such as “regulate,” “restrict” and “ban” are such words to avoid. Don’t use accusatory words such as “you stink.” That just makes people defensive.

 

Positive words to use instead are “clean,” “safe,” “fair” and “free” (from). Words to characterize the problems could be “toxic,” “noxious,” “dangerous,” “unprofessional,” “uncool,” and “unhealthy.”

 

Radiowaves can be referred to as “electromagnetic radiation,” “RF radiation” or simply “radiation.” Note that the other side never uses these words even though they are scientifically accurate. They know very well the ominous meaning of “radiation.”

 

Be careful about using strong words about your opponents. That will likely turn off a lot of people who are considering your message, but not fully convinced. On the other hand, not using strong words may upset some of the more militant people that are already on your side.

 

Slogans

Slogans get to the point in as few words as possible, but be careful, as they may also antagonize people.

 

Examples are:

 

Slogans that will make people defensive and less likely to accept your message.

 

Be truthful

Our strength is that we represent the actual truth, even though the word “truth” is much abused these days. If we lie, it will split our own people, as most of us value honesty. And the other side will pounce on lies and use them against us.

 

Our story is horrible enough as it is, we don’t need to exaggerate or make anything up.

 

Lies work if you can afford a PR machine that repeats it so often it becomes “truth.” We can’t afford that.

 

Consider the audience

Politicians tailor their speeches and advertising to their audiences all the time. You can too.

 

If you speak before a group with a particular focus, say breeding dogs, and you have the same interest, by all means mention that to build rapport with the audience.

 

If your audience is people who love modern art, you can assume they are more open to new ideas than the general population.

 

Be careful about stereotypes. A conservative audience may tend to be more skeptical of new ideas and anything that requires change, though liberals can be highly resistant too. (The New York Times has been downright opinionated about the health effects from cell phones.)

 

Always remember that the illness can strike anyone regardless of cultural or political background.

 

Different things reach different people

If you present the same message to ten different people, they will react in different ways. If you present the same message in a different way, the same people may have other responses.

 

This is reflected by how people choose to get their news, whether from social media, newspapers, radio or broadcast television. And within those media, there are also great differences in style.

 

Regular people are “clueless”

Whenever people are confronted with some information, they interpret it based on their own life experience and what they think they know. Living with a disability of any kind is so far outside the life experience of healthy people that they simply do not understand what it really means.

 

The more visually obvious disabilities, such as using a wheelchair, seem rather easy to understand. But that is actually a lot more involved than just needing a wheelchair ramp.

 

When it comes to an invisible disability, such as an environmental illness, it is even harder to comprehend how that actually limits daily life.

 

People can understand that beating up peaceful demonstrators is wrong, because they know from personal experience that such violence hurts. Hurting people with chemicals or wireless radiation is also a form of violence, but regular people will not think so, since they have not experienced that themselves, and there are no visible marks.

 

Doctors can be as clueless as regular people, and they can be especially resistant to accepting new information since they have this all-knowing image of themselves (at least American doctors do).

 

Journalists tend to have a lot of opinions, even about an illness they know nothing about. This has hurt our public image tremendously.

 

To effectively communicate with people who do not have the illness themselves, it is important to consider that they live in a different world than we do, so it is hard for them to grasp what is obvious to us.

 

Change is hard

Most of the people who oppose the acceptance of MCS and EHS genuinely believe what they say. They are terribly wrong, but they are not all evil.

 

When people have an opinion about a particular subject, they tend to focus on news that confirm that opinion, and ignore what contradicts it. This is called “confirmation bias” and happens regardless of the person’s political leaning or educational level.

 

People do not change their perceptions, unless they think it is their own idea, or they get several nudges, hear it from others they trust, and some time passes.

 

Changing your mind abruptly means you have to admit, at least to yourself, that you were wrong before. People don’t like to admit they were wrong. A gradual change goes down much easier.

 

People can also become extremely defensive if they see a message as criticizing them. People who love cigarettes, cologne, and Wi-Fi will be defensive to messages that those things make other people sick. People also don’t want to hear that their opinions are actually a result of clever messaging.

 

Scientists, who almost by definition should be interested in learning something new, can be extremely stubborn. This is because it can damage their all-important reputation if they as much as even consider a controversial subject. “Renegade” professors are not hired by prestigious universities and do not get tenure.

 

There can also be financial reasons why people are defensive, such as someone who owns a building that is inadequately ventilated, or the person who designed that building.

 

If people somehow feel threatened by your message, the only way to reach them is to address their feelings of being threatened. Facts cannot counter emotions.

 

Prejudices

Prejudices are a major roadblock towards acceptance and accommodation. People who are able-bodied simply do not understand what it means to have a disability, because it is so different from their own life experiences.

 

They often think they understand, but rarely do. That is even the case with the visibly obvious disabilities, such as someone on crutches or in a wheelchair. If the disability is not visible, then the comprehension lacks even more. That is just human nature, and not a sign that a person is evil.

 

There are people who take a harder line and regard disabled people as inconvenient wimps who complain too much and are just looking for free handouts. They simply have no idea.

 

Some people even resent what they see as “special treatment” and say “everyone should be treated the same.” Never mind that the rich and powerful get all sorts of special treatment, such as developers getting subsidies and exemptions from laws. Never mind that small changes can make a big difference, such as a bathroom with adequate ventilation so it doesn’t “need” toxic fragrancing.

 

People with MCS and EHS are especially vulnerable to prejudice, as some see these illnesses as “women’s diseases.” Women have lower status than men, and are often thought prone to “hysteria.” That goes hand in hand with the diseases being falsely portrayed as mental diseases of some sort. A major part of activist work is to overcome these tropes.

 

There is also the possibility of scapegoating. A stranger once walked up to one of the people living in the EI community in Snowflake, Arizona. He very angrily said that if it wasn’t for them, businesses would come to the area and create good jobs. This was during the 2008-2009 recession.

 

Don’t waste any effort on prejudiced people

You can’t change the mind of people who have these prejudices. They are based on their personal values and outlook on life, and no reasoning or appeal to human values can change that.

 

Trying to engage such people in a discussion can feel threatening to them, as you can be seen as attacking their core values.

 

It is much more productive to focus on people who don’t have an opinion, or who just have doubts they are not emotionally attached to.

 

The message from the other side

The opponents of accepting MCS have been active since before 1990, while the opposition to EHS showed up a decade later. They have not been very active in the last decade or two, since MCS and EHS have faded from the media, and the false impression that the illnesses are all mental are established in the public mind. If the EI community again gets a voice, the other side will quickly become active again.

 

It is very threatening to many sectors of industry that environmental illnesses exist, as acceptance of them could mean lawsuits, legal restrictions, and the public stops using their products. The sectors threatened by MCS include all sorts of household products, building products, agriculture, cars, housing, and more. The tobacco industry saw itself very threatened by MCS in the 1990s, when the hazards of second-hand smoking was debated.

 

The existence of EHS threatens much of the telecom and electronics industries, the electrical utilities, and the whole military complex.

 

The tactics used against people with environmental illnesses, and other “inconvenient” groups, are well documented (see link below). Still, it can be hard to believe people can be so cruel. Then consider that according to a 2021 article in Fortune magazine, twelve percent of corporate leaders are psychopaths. That means they are incapable of feeling any remorse for their actions. Psychopaths can be incredibly charming and persuasive when it serve their goals.

 

While we have to prove ourselves, all the other side has to do is put doubt into people’s minds. That has been done successfully for many decades on all sorts of issues, with the health effects of cigarettes the best known example (the resulting delay in public acceptance cost millions of lives).

 

Their basic message is usually that the disease is “not legitimate,” and therefore there is no need to do anything to help the sick, no need to accommodate them in the workplace, no need to restrict chemicals (fragrances, pesticides, etc), no need to lessen the electrosmog (cell towers, all sorts of wireless, etc), and no need to fund medical research (which might legitimize the illness).

 

They convey this message of illegitimacy in many ways. They may employ public relations experts who are the hidden hands that behind the scenes organize what appear to be spontaneous stories in the media. Paid “experts” are available to talk to the media and testify at hearings that there is “no convincing evidence” that the illness is caused by (pick whatever cause). A trope commonly used by the media is to accuse the sick as being “self-diagnosed” (even when everyone they interview is actually diagnosed by a physician).

 

They may even fund “research” by scientists who can be relied on to produce conclusions they want. This is called “cigarette science,” since the tobacco industry invented the method.

 

They keep putting these same messages of “illegitimacy” out, so they stick in the public mind.

 

Manufacturing doubt

Making us look like weird freaks is also a common tactic. In 2022, the psychiatrist Dr. Joseph Pierre published the article “Tin foil hats: tired trope or sign of times?” in the popular magazine Psychology Today. It is available online and is well worth reading as an example of clever manipulation.

 

Dr. Pierre postulates that people with EHS are conspiracy theorists, which he bases on “more than one” patient seen in his office. That means two or three people, and since only a small part of the EHS community goes to psychiatrists, that is hardly representative. What scientist makes a conclusion based on a couple of non-random people?

 

But the average reader wouldn’t know that, thus Dr. Pierre creates a harmful stereotype, based on a half-truth. Half-truths are commonly used to manipulate the public, and technically they are not lies.

 

The psychiatrist duo of Simon Wessely and James Rubin has since the 1990s promoted the idea that any disease not currently understood, is a purely psychological disease. They call them “functional disabilities,” which means the same as “psychosomatic,” without the immediate stigma.

 

They’ve mostly focused their ire on the people with CFS/ME, but included other diseases. The most blatant attack on people with MCS or EHS was a 2012 article they wrote with I. Boyd, where they accused the sick people of wanting to live like hermits. To support this radical claim, they present three stories from popular media, none of which says the isolation is voluntary.

 

There have been doctors and others who postulated that the EIs are mostly people who are “failures in life” who then “become sick” so they can get a free ride, so others have to take care of them (never mind the poverty and broken families that are often the result of the illness).

 

This all plays into the tribal instincts we all have. Anyone who appears to be a “freak” is not “one of us” and thus does not merit much sympathy.

 

They can also lobby journalists, media personalities, internet influencers, scientists, and politicians. They can spend money on lavish dinners and other perks, or outright payments, to get them to sway the public opinion.

 

They have many more tools available to influence the public mind, than a grass-roots organization can use. This is both because of cost and ethics.

 

Not just for the doubters

People who are sick with environmental illnesses have a need to be validated, and to know they are not alone.

 

If all you hear is that it is “all in your head,” you can start doubting yourself, no matter how obvious it is what causes the symptoms. “Maybe it is all in my head,” some may think. There is no data on how many people who have EI are trapped in the psychiatric system, either confined to an institution, or living their lives in drug-induced fog, or both.

 

This writer has met people who first did the psycho treatments. When that provided no help, they looked for answers themselves and found doctors who could diagnose their environmental illness.

 

The illness can also be terribly isolating. Interacting with others on social media, reading validating stories, and learning how to make our lives better can lift the spirit.

 

It may also create hope that a better world is possible. Hopefully some get encouraged enough to become activists and actually do something about it.

 

The inspiration for this article

The media-war waged after the Russian full-scale invasion of Ukraine in 2022 inspired this article. Russia needed to justify the attack and incessantly accused the Ukrainian government of being Nazis, which is a potent reference to World War II, that still looms big in Russia. Even some Westerners think that since this accusation keeps coming up, “maybe there is something to it?” (The Ukrainian president is a Jew, and Ukraine is hardly a fascist state.)

 

About fifty countries have sent help to Ukraine. That would not continue to happen if their citizens did not have sympathy for the Ukrainians, who have been very successful at creating a constant stream of media stories supporting their war efforts.

 

When people tire of stories about bombed-out cities and atrocities, here comes some lighter fare. That can be satire, such as comparing the Russian president Vladimir Putin to Adolf Hitler (by calling him Putler). Satire can be a powerful tool to get your message across.

 

The Ukrainians are great at letting the world know that they are normal people, people who are likable, who fight the good fight. They are worth helping. They don’t say it explicitly, but that is the perception one gets, and that is by intent.

 

There was the story with a picture of a young blond woman camping in a subway station in Kyiv during the initial phase of the war. Another story was about how two women traveled to meet their husbands at the front for a weekend (with a picture showing them holding roses). Much has been written about the bomb-sniffing dog Proton, who has hundreds of thousands of followers on Instagram. There is even a picture of Proton and Antony Blinken, while he was the U.S. Secretary of State.

 

Another inspiration to write this article was a 2018 article in TIME magazine about a high school girl who was brought into the United States illegally when she was five years old. She lives in small-town Ohio, has an after-school job at McDonald’s, and dreams of becoming a police officer. There is a picture of her doing the Pledge of Allegiance. The unstated question is: “Who would want to deport her?”

 

Perhaps one day in the distant future the American media will again be that sympathetic to us. We deserve it.

 

If you could travel back to the year 1975 and tell people that 25 years later smokers were looked at as uncool and were banished from public buildings, they would think you were nuts.

 

People’s perceptions can change, but they don’t change on their own.

 

Recommended readings

Conflicts of interest: how money clouds objectivity, Richard Smith, Journal of the Royal Society of Medicine, 2006. Available for free online.

 

The influential mind: what the brain reveals about our power to change others, Tali Sharot, New York: Henry Holt and Company, 2017.

 

Guerrilla PR: how you can wage an effective publicity campaign without going broke, Michael Levine, New York: HarperBusiness, 1993.

 

American dreamer, Charlotte Alter, TIME, April 16, 2018.

 

Don’t think of an elephant!, George Lakoff, Vermont: Chelsea Green Publishing, 2014.

 

The roots of science denial, Katharine Hayhoe and Jen Schwartz, Scientific American, October 2017.

 

When facts backfire, Michael Shermer, Scientific American, January 2017.

 

 

More information

More articles about how to do EI activist work at www.eiwellspring.org/activist.html.

 

For an article about messaging used in film:www.eiwellspring.org/edu/FairResponsibleFilm.htm.

 

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