Janine
I’m an editor. I always said I would never get on camera because I know what happens to people who do.
I am no stranger to how television is made, to the lengths that are gone in order to hook an audience, how information is distilled, manipulated and altered to create a digestible and easy to follow story line that works for the overall narrative and fits in the allotted running time, how small moments can be sensationalized into bigger ones to set up and build stakes and cliffhangers …all to garnish better ratings and a bigger following.
I am a non fiction/documentary television and film editor, after all.
None of these tricks are foreign to me and it was one reason why I was hesitant for Jill and I to participate in the Netflix series, Afflicted. I always said I would never get on camera because I know what happens to people who do. So, yeah, my bad.
However, we were assured that this series would shine the light on misunderstood and unknown conditions and illnesses. It was not going to be a reality show — rather, it would use footage from our story to help experts and scientists explain chronic illnesses like mold toxicity and chemical sensitivity that my partner Jill suffers from.
Jill wanted to be part of that platform. As a trauma therapist, she helps people every day. And, she wanted to help others who were suffering with chronic illness as well with her participation… not just by letting them know they weren’t alone, but also by showing them that there was hope because she came back from the brink with proper care quickly. She wanted to help their loved ones understand that their unique and confusing situations were REAL, not fake, not psychosomatic, not in their heads! There is PROOF, science, treatments out there — albeit expensive and difficult to find. In her very Jill Maxi way, she wanted help. This is one of the many reasons why I love her so much. So, I agreed.
Afflicted took our story and made a work of fiction.
If you blurred our faces, altered our voices and took out our names, I would not recognize our lives as there were such gross inaccuracies, fabrications, and omissions. It really is completely shocking. In my 27 year documentary filmmaking career, on every show that I worked on about real people and real situations, extreme care was always taken to make sure we were not altering basic facts. Sure, we omit for time, we gloss over unnecessary details, and, yeah, we frankenbite the hell out of people. “Frankenbite” is an industry term for editing together different parts of a character’s interview to make them say something they didn’t neatly say. It essentially is a way to make a character say something succinctly while maintaining the integrity of the message. And, I have made a LOT of people sound way more intelligent and well spoken then they were in there interviews in my career, that is for sure.
But, there was always follow up with characters and experts to make sure we got the facts straight in order to honor the people who put themselves out there for our shows. Especially if that show included a text on screen epilogue. Literally, the days or weeks before a show goes to online, someone follows up. With Afflicted, that did not happen. Outside of confirming Jill’s supplements and asking if they could use the sign on her door, once the production crew wrapped, not a single person contacted us to verify information or even get a proper update. (For example: we are not moving to Colorado. The remediation of the house was successful and Jill is not made ill by living here so we aren’t selling it anytime soon. Also, it won’t cost $90K to finish the house, Dr. Nagy was not pitching a $30K treatment to Jill and we are getting married in October).
The end result of this lack of integrity and follow up? An exploitation of tragic and debilitating situations as sensationalized entertainment rather than using this platform to educate about chronic illness… Afflicted is the very opposite of what each and every one of us were promised.
A lost opportunity
Jill, Jamison, Jake, Carmen, Pilar, Star and Bekah willingly opened themselves to the Afflicted team not for attention, not for notoriety nor for fame. They shared their stories and experiences to show the truth of those who suffer from misunderstood chronic illnesses to the vast audience that Netflix reaches. The Afflicted Seven courageously and selflessly allowed crews access into their lives, their homes, to their families and friends. They disrupted their lives, sometimes even getting more ill in the process. They did this in the hopes of helping those like them, to give their suffering credence, to give the loved ones of those who suffer a bit more insight, to extend a hand and a voice to those suffering in the shadows.
But also, at least for Jill and I, they put themselves out there as cautionary tales in hopes to help people both sick and not. To pay attention to their homes and work environments. To act fast if they become sickened themselves. To show how to act, what to watch out for, where to go for proper diagnosis, treatment and help. and, for goodness sake, GET YOUR PROSPECTIVE HOUSE MOLD TESTED before buying regardless of what your inspector advises. Yes, I had a house inspection and the inspector advised that I save myself some money and forgo the mold testing DESPITE the fact that the house was in a flood zone and there were sump pumps. Again, my bad, but as a first time homebuyer, it was so overwhelming that I just trusted the professionals that were helping me.
They did it to show how our modern world is getting less and less healthy with mold, pesticides, indoor pollution, tick borne infections, electrical and magnetic radiation, and hyper medicated pharmacological minefields.
They did it to tell the world they exist and to engage everyone who watched in demanding better medical care and scientific research.
Instead, the Afflicted Seven were turned into social media fodder for people to criticize, make fun of and belittle as well as targets of anger and judgement. Several people have questioned whether Jill should be practicing as a trauma psychotherapist. She is concerned that her practice will be negatively affected, that her patients will leave, that potential clients will not consider her at all. Yes, we knew by stepping into the public eye we would open ourselves up to criticism. We aren’t naive. I have no problem being criticized (again, an editor by trade). What I have a problem with is being falsely represented and then being criticized for that representation.
One of the most dangerous examples of this: characters questioning the sanity of the sick person edited together with Dr. Richard Friedman, a pharmacological psychiatrist who does not treat people with chronic illness, stating that chronic illness is a function of the mind. Or that it is psychosomatic. Or that these people convince themselves that they are sick when they are not, etc., etc., etc.. This happened throughout the series. It was very manipulative and very specifically led the audience to the conclusion that whomever they were speaking of wasn’t physically ill but mentally ill … and, therefore, cast doubt on any other person suffering from the same illness. And, actually the questioning the sick person, in my experience at least, were prompted in interview. During my interview, I was asked if I felt like Jill’s illness was in her head. I responded, “No, absolutely not”. I was asked if I ever thought it and responded honestly that, at first, I was concerned because I had never experienced such an illness before. It was in that context that I said the line “Is she CooCoo for Coco Puffs…?” That line was used. My emphatic opinion that this isn’t “in her head” was not.
By using tactics like these, manipulating and omitting facts such as confirmed diagnosis proven with lab work, and excluding experts in the field of chronic illness, Afflicted created a modern day coliseum out of people who trusted them and, by extension, those who are desperate and suffering in similar ways.
Rather than ask the question: “How can we help these canaries in the coal mine?”, Afflicted asked over and over and over again, “Are these canaries crazy?”
Actually, Afflicted didn’t really pose it as a question. It out and out said they were crazy despite all of the information and diagnostic testing provided by the Afflicted Seven which said the opposite and which was omitted.
The Afflicted Seven did not sign up to fight for a prize on Survivor, or get a job with Donald Trump. They didn’t sign up to live in a group house, get sober, lose weight, get makeovers or get tattoos. They didn’t get paid. In other words, they did NOT sign up to be put into a produced situations to then be picked apart and pitted against each other. They did not sign up to be on a reality TV show.
The Afflicted Seven signed up to share their stories. Their authentic, real, tragic, heartbreaking stories of pain and suffering.
Afflicted took those stories and exploited them.
Afflicted had a real opportunity to help an incredibly marginalized and suffering population — millions of whom have lost everything, are homeless, alone, in poverty unable to afford treatment, proper housing, even food. Many have lost their families, jobs, and, some, the will to live. The suicide rate among this population is staggering. They are the canaries in the coal mine of our modern world.
Instead of helping, Afflicted made a mockery of their suffering potentially pushing back public understanding and empathy decades.
That is, simply put, unethical.
janine feczko
editor, producer, Afflicted contributor
You can follow her on Twitter: @janinius9f
If you would like to help Jill with her medical care, please see: https://www.gofundme.com/vvnb4-getting-sick-is-expensive
janine feczko is an emmy award winning editor and storyteller. she lives in bloomfield, nj outside of NYC with jill and shadow. She and jill will be married in october, 2018.
Read more true Afflicted stories here
