Talking to the media about
environmental illness (MCS or EHS)

 

 

What to expect if agreeing to an interview, what to look out for and how to negotiate some ground rules and accommodations.

 

Keywords:   journalist, media, TV, magazine, video, interview, how to, MCS, electrical sensitivity, accommodation

 

 

Why talk to the media?

The picture above is from a visit by KBSTV from South Korea.  They are interviewing two young women with severe MCS, who are living in a station wagon.

 

Media stories can reach many people who would otherwise not hear about MCS or EHS.  This can help people who have these illnesses, but have not been diagnosed, start asking better questions and perhaps find the right kind of physician to diagnose and help them.  It may save some people from years of suffering and inappropriate treatment.

 

A media story can also help us get more accepted.  It is much easier to ask to be accommodated in a store, a medical facility or at work when people have already heard about us.  It may also help get funding for medical research to find out why we get sick and how to treat the illness — research is sorely lacking due to very little funding available.

 

On the other hand, a negative media story can damage our cause.  Some journalists have been hostile towards us and produced stories that painted us as having an imagined illness and the doctors who try to help us as quacks.

 

I have been interviewed by two TV stations, two radio stations, one print magazine and one online magazine (which did both a video report and a written story).  I also know four other people who have been interviewed.

 

Most of the interviews I have participated in are positive, but I have been rather careful in who I talked to and what I said.  I know people who have been less fortunate and really got burned.

 

What the media wants

There are two types of media:  public and commercial.  This is an important difference.

 

Commercial media dominates in America, while public ownership dominates television and radio in Europe and many other places.

 

The commercial media needs to sell advertising to exist and needs to keep people captive.  They are therefore more likely to distort the real story in order to make it more sensational or to emphasize controversies and conflicts as that, unfortunately, appeals to a lot of people.

 

Public media, such as PBS and NPR in the United States and BBC in Britain, are much less likely to be sensational.

 

Some media have a political agenda that influences how they report each story.  A media that supports a right-wing agenda is unlikely to be sympathetic to people harmed by industrial pollution.  However, mainstream and liberal media have produced some awful stories as well.

 

Commercial media also have to be mindful of not annoying potential advertisers.  Just see how long it took for the mainstream press in the United States to talk about climate change.

 

It will be simplistic

All media need to simplify a story to make it easy to understand and brief enough that people do not lose interest.  This is difficult to do for a complex issue such as environmental illness.  They tend to pick a few obvious things to highlight and ignore the rest.  If the person they interview has both MCS and EHS, they tend to just mention one or the other.  If they use still pictures or video, they will tend to go with what is visual, such as respirators, aluminum-foiled walls and reading boxes.

 

Commercial video and television tend to condense and simplify their stories more than public television.

 

It is highly unlikely that they will show you making a lengthy statement or quote you at length.  They may let you make such a statement, but it will be cut down or left out entirely.

 

A TV crew may spend a full day with you, but the end result may be just a few minutes of video.  A journalist may spend multiple days on a visit and call it “in-depth reporting,” but it is really still quite superficial.

 

Despite the simplistic result, the readers/viewers will tend to think that they have been fully informed on the issue.  This is especially the case with video and television, which are such powerful media that makes people feel they’ve “seen it with their own eyes.”  It is easy to manipulate an audience because of that.

 

It is revealing to read people’s comments on media websites — how they make judgments based on what is really very limited information.  One example was an article about people who were electrically sensitive.  The article mentioned riding in a car owned by a sensitive person.  A commenter thought that was proof people with EHS were faking it, since cars radiate EMF.  I had told the journalist about the various low-EMF vehicles, but she didn’t mention it in her article.  It was probably too technical.

 

Talk to the journalist in advance

If at all possible, talk to the journalist before you agree to an interview.  You have the right not to agree to be interviewed.  Even if you’ve already said “yes” you can still change your mind once you learn more.  You are not obligated.

 

But if you say “no,” do it before the journalist travels to your house.  An angry journalist may decide to write the story anyway, and you can be sure it won’t be a friendly one.

 

You can negotiate some conditions for the interview during the pre-interview conversation.  This can be accommodations to keep you safe and it can be about the article itself.  Be careful here, as your requests can backfire.  These issues will be covered later on.

 

Find out what angle will be used for the story

The journalist usually has a specific angle in mind for the story.  Sometimes he or she is willing to talk about it up front, if asked.  This can be very helpful for deciding whether to participate or not.

 

I was once contacted by a South American TV station that was producing a series called “Fantastico.”  Obviously sensationalistic, so I declined.  Another TV station was making a series about neighborhoods in conflict or “on the edge.”  I declined that also.  Tabloid magazines or TV programs are rarely a good way to educate people.

 

A journalist who plans on making a scathing story surely won’t say so.  They know that will not get them the interview.  Instead, they may say something like “I’ll just report as it is” or a similar vague statement.  Some journalists may not really know in advance how they will slant the story, but I think the vast majority know.

 

If the journalist says she knows someone with MCS or EHS already, that raises the odds of a sympathetic story.  But it is not a given; I know a case where the resulting story was rather neutral, though it did label people as “self-diagnosed” (even though all had been diagnosed by physicians) and other details that cast doubt that MCS was a “real” illness.

 

Journalists are busy people.  They do not have much time to work on each piece so they are unlikely to read a book or any medical articles you may send them.

 

Are they interviewing any doctors?

Ask ahead of the interview whether they will also interview any doctors.  Many stories about us feature a physician who says MCS or EHS is just an imagined illness.  Journalists consider that a balanced story, since both sides have been heard.  It is not balanced since a physician, filmed in a white lab coat and in a clinical setting, commands a lot more respect.

 

I have a friend who considered an interview, but declined when the journalist admitted (very reluctantly) that she also intended to interview a physician.  The journalist later called again and said she was willing to drop the interview with the physician.  My friend then agreed to the interview, but the article prominently told the readers that this interview was done on the condition that the journalist didn’t talk to any psychiatrist.  A lot of commenters found that to be the most damaging part of a very negative article.

 

A better approach may be to make it a condition that if there will be any physician, there will have to be two — one for each side.  And they must be given equal time and treatment.  Of course, clever editing can still make both doctors seem to agree that you are nuts.

 

You can suggest they interview a doctor who treats you, or you can ask them to contact the American Academy of Environmental Medicine for a referral.  Or ask a support group for a referral.

 

This two-or-none approach has not been tried yet.

 

Check the journalist’s work ahead of the interview

A lot can be learned about the journalist and the media he or she works for by looking at previous articles and videos they publish on the web.

 

Everybody has their own style and what you see there is likely how they will treat your story as well.

 

Do they tend to stick up for the little guy against corporate interests?  Do they treat everybody with respect?  Do they emphasize controversy and confrontations?

 

Some media are just unlikely to be sympathetic.  I’ve once flatly refused to talk to Fox News.  A friend refused to talk to ABC Nightline, since they’ve aired a very biased program about Dr. William Rea.

 

Some media tend to stick up for the little guy, but can still bring an awful story.  I’ve seen that happen with the Guardian and the New Yorker.  There can also be pleasant surprises, such as Popular Science bringing a very respectful article about someone with extreme electrical sensitivities.

 

It is important to check up on the individual journalist, too.  One wrote a very scathing story about two friends of mine.  When we googled her name we found some disturbing stories she had previously written about other people.  Don’t skip such a simple checkup, no matter how friendly the journalist appears to be.

 

Accommodations

If you have severe MCS or EHS it is best you ask for some accommodation.  You need to be clearheaded in order to present well.  The journalists will not know how you are normally.  If exposures make your speech slurred, your personality confrontational or your intelligence twenty IQ points lower, they will think that is normal for you.

 

You should discuss your needs before the journalist arrives.

 

A common request by people with MCS is to be interviewed outside and ask the journalist to refrain from using any scented products.  This does not make them safe, but it all helps.

 

In two cases the journalists agreed to a more elaborate cleanup, including showers and borrowed clothes and not staying at a motel.  It went well in the first case, but in the second case the journalist was a bit of a princess and she focused her whole story on these things, in a way that was way out of proportion to the actual events.

 

People with EHS can request a wired microphone, as most mics are wireless today.  The video journalist may need to bring a tripod to hold the microphone.

 

A video journalist and a print journalist, who helped holding the microphone.

 

The journalist will be friendly

All journalists know that it is a lot easier to get people to open up and talk freely if there is a friendly rapport.  Every interaction I’ve had with the media has been very friendly and easygoing when they visited.  That does not mean they are your friend, some of them are not.  I’ve been interviewed by a very cute twenty-something journalist who interviewed five people and then wrote a knife-in-the-back story on two of the other people.

 

Every minute you spend with the journalist is, in fact, part of the interview.  Everything they see and learn will shape their story.  Remember, what we have to live with every day is hard to comprehend for outsiders, including journalists.

 

Beware of the culture gap

There is a big cultural gap between people with serious disabilities and the rest of society.  People who are able-bodied cannot really relate to what it actually means to have a disability.  They may somewhat understand what it means to use a wheelchair, but only somewhat, as that is more complicated than it looks.  With invisible disabilities, such as environmental illness, it is much harder for the journalist and the readers or viewers to relate and comprehend the impact.  They will not really understand what it is like to be treated with suspicion, and sometimes outright dismissal, by old-school physicians.  Or what it is like to get brain fog every time you go into a store or run into someone reeking of perfume.  Or the myriad other effects we may have from what other people think of as “normal life.”

 

When you talk about your illness, try to describe what it is like to you, what it does to you, rather than just saying that pesticides or mobile phones are bad things — most people voluntarily pay money for those things.

 

Avoid controversy

There is a limit to how much journalists and their viewers and readers can accept of new material.  MCS and EHS are plenty controversial by themselves — adding more controversies will just create an overload and erode credibility.

 

Avoid discussing politics, alternative treatments, conspiracies, chemtrails and other things that are not generally accepted.  Also avoid making sweeping statements about the causes of MCS and EHS.  There are no established facts on any of these issues, even though some people have strong opinions.

 

People who read or view the story will stereotype what they see to apply to all of us, just as people stereotype women or people from certain races or religions.

 

When mainstream medicine fails to help, people try all sorts of alternative treatments.  That has been the case for many kinds of diseases, not just environmental illnesses, but mainstream people may not understand that and consider it weird.  Discussing alternative treatments will not help your credibility, since most healthy people have not seen for themselves how mainstream medicine often fails on chronic illnesses.

 

You can discuss controversial things off the record (make sure all recording devices are turned off), but consider whether it really benefits anything.  I know one case where a person with MCS shared her pet theory about a way to diagnose MCS.  Even though she spoke off the record, this scientifically unsupported idea made it into the article anyway.  It was just mentioned indirectly and not at all positively.

 

Respecting your privacy

Some journalists do not respect privacy.  They seem to think that when you agree to an interview, everything is fair game.  It isn’t, but they have the power of the final word.

 

In one video interview they asked such a question.  The man responded reasonably “I don’t want to talk about that,” which was used in the video to make it look like he was hiding something.  I suppose a better response would have been total silence, but a hostile journalist can always manipulate things.

 

Beware of baiting

During one interview with me, the journalist abruptly changed the subject with the question “Is there a war going on?”  It was clearly meant to catch me off guard and say something strongly worded.  Luckily I sensed I needed to be careful, so I just said “No there isn’t a war going on.”  I didn’t have time to think of a better answer, but that was certainly better than any sort of tirade about industry shenanigans.  It would not have looked good on TV.

 

Avoid “theatricals”

Some of the early TV programs featured people who deliberately exposed themselves to the point where they had seizures and rolled around on the floor.  Those demonstrations are dangerous and I don’t think they garner much sympathy from a TV audience, anyway.  They will not convince many people that environmental illness is a legitimate disease.  Don’t do this to yourself.

 

You won’t see the result before publication

The journalist will probably not send you the article or video before it is published.  They may call or e-mail with a question, but you do not get to approve anything.

 

All popular media are subjective.  The journalist simply reports his or her subjective perception of the matter, based on his or her personal biases.  To them, that is as good as your opinions.

 

Complaining about a story

You can complain about a story, if you think it is too slanted or inaccurate.  You can try contacting the journalist, but it is far more effective to complain to the editor.  Public television stations often have an independent board to handle such complaints.

 

Some mainstream media take such complaints seriously, if you can point out specific factual errors.  Some media do not care if they are wrong or unethical (just look at the tabloids).

 

Public television stations usually have a requirement to be factual (with a lot of leeway).  Private TV stations may not.  Two TV journalists once sued a Fox affiliate they worked for over that issue.  They lost.

 

It is very unlikely that a story or program will be pulled off entirely.  They may agree to edit or remove parts of the text in the article or shown on the screen (I have been able to do both).

 

The first time you contact them, you may be brushed off.  Try again.  Be polite and be factual, that will get you further.

 

2017