“Beware lest you lose the substance by grasping at the shadow.”
“Freedom to differ is not limited to things that do not matter much. That would be a mere shadow of freedom. The test of its substance is the right to differ as to things that touch the heart of the existing order.”
Robert Jackson, Author
“Beneath every story, there is another story. There is a hand within the hand…… There is a blow behind the blow.”
Naomi Alderman, Author, The Power
“When you challenge other people’s ideas of who or how you should be, they may try to diminish and disgrace you. It can happen in small ways in hidden places, or in big ways on a world stage. You can spend a lifetime resenting the tests, angry about the slights and the injustices. Or, you can rise above it.”
Carly Fiorina, Former CEO of HP and Presidential Candidate
“Censorship is to art as lynching is to justice.”
Henry Louis Gates, Literary Critic
Last week’s article on “F.E.A.S.T. – Friends Exasperated at Anorexia’s Special Treatment” was unique for the vitriol the article generated amongst the eating disorder community. By eating disorder community, I refer to the foundations, groups and individuals who have been impacted by this disease, including advocates and activists. The immediate aftermath resulted in banishment from groups, censorship, harsh words being directed at the author, a loss of whatever respect existed in some people’s eyes and a picking up of pitchforks and torches.
This vitriol was directed NOT at the substance and accuracy of the article, its facts and research. These were never challenged. Instead, the angst was universally reserved for its “tone.”
So, in the spirit of open communication, let’s address some issues and questions which were raised.
First, was the article necessary at all?
The answer is, of course not! … IF …
Had the subject of weight stigma and increasing awareness for binge eating disorder and bulimia been approached openly and in a collaborative, non-confrontational manner instead of being presented as a Zero Sum Game Equation, where “anorexia has to stop being centered and what can we do to change that,” the article would not have been necessary nor written. But, the true message underlying the topic of the broadcast was not presented openly.
Other reasons supporting the necessity of the article will be elucidated throughout.
Second, why was the “tone” so harsh? Was that really necessary?
The answer lies in the context and circumstances surrounding the substance of that particular article which dictated its “tone.”
Between the time of the broadcast and prior to the article being published, a number of people and entities had opportunities to correct the misinformation regarding mortality rates. Certainly, F.E.A.S.T. could have addressed and rectified the misinformation any time in the approximate two weeks after the broadcast. Yet, even that would not have been necessary had even one of the treatment professionals who appeared on the broadcast immediately corrected the mortality misinformation during the broadcast. Ms. Muhlheim, in all reasonable probability, had that information at her fingertips. Ms. Muhlheim, just four days after the broadcast published an article which had been medically reviewed by a board certified physician stating that anorexia had a much higher mortality rate than the other eating disorders.
Before publishing the article, I spoke with two medical doctors and asked them their understanding of mortality rates. Each not only immediately responded anorexia, but were quick to point out a specific type. Mortality rates are not a closely guarded secret being held by medical professionals in the eating disorder industry.
Eating disorder professionals, medical doctors, psychologists, counselors and clinicians who have the expertise and in depth knowledge of eating disorders have the non-delegable, absolute duty to insure that only accurate information regarding eating disorders is released to the public. That is because people and families who suffer from, or who have been impacted by this disease justifiably rely on this information and that it be accurate. Lives depend on it.
And yet, no one chose to correct this crucial misinformation. The eating disorder industry is already rife with false statistics, incorrect information, premises not based on reason, reality or accountability, no generally accepted standards of care, silo mentality and unfair practices from insurance companies.
F.E.A.S.T. dropped the ball in disseminating false information regarding the deadly nature of anorexia and then by not proactively providing correct information. And yet, the fault lies in so many other areas as well.
Third, you did not have to go after Laura Collins. You could have gone after F.E.A.S.T. Was that really necessary?
In this case, unfortunately yes.
The misinformation came directly from Laura during a live broadcast. This was not a circumstance where an organization generally issues art work that is controversial and then the person behind it cowardly hides behind a cloak of anonymity. See the graphic NEDA released on July 23, 2019.
This was Ms. Collins individually expressing her views. Days before, she also expressed her views by publishing that she was irritated or infuriated by the topic.
I respect Laura’s passion. In fact, Ms. Collins is performing an incredibly difficult job. I would not want that job. Not only that, I could not do her job. Laura has helped so many families. Further, in the not too distant past, I had reached out to Ms. Collins on a number of occasions asking for her input and advice on several topics in the eating disorder industry. She graciously responded and gave sound, substantive information and advice. At some point unfortunately, her spirit of collaboration changed. Since she is the founder and leader of a parent’s group, and the information contained in past articles have been of help to any number of parents (as expressed to me) I was disappointed when Ms. Collins publicly stated that I was to not send her any future articles. But, that is certainly her prerogative. And yet, censorship or closing your eyes to all relevant and material information is fraught with peril.
Nonetheless, the substance, research and facts set forth in my articles are sound. When mistakes have been made, I have publicly rectified and corrected the information. I often consult with others before publishing. But also, being a warrior for 35 years in courtrooms hones and impacts a person’s communication style and ability. If that sometimes results in an unpopular or perceived harshness of the “tone” of an individual article, there are reasons for that, some obvious, some subtle.
During the ICED Conference in New York this past March, I published an article on the past sexual assaults and circumstances at Timberline Knolls which were detailed in a Chicago Tribune article published just the week before. The “tone” in that article was attacking. Two people from Timberline Knolls approached me at the Foundation table in the Exhibit Hall during the Conference. One was an outreach representative. She started in on how unfair the article was and the discussion had the potential to become unproductive. The other person was Timberline Knolls’ medical director, Dr. Johnny Williamson. Dr. Williamson jumped into the conversation and within a very short amount of time, a frank open exchange of ideas and communication resulted. The next month, Timberline Knolls hosted a luncheon in Dallas that I attended. Dr. Williamson appeared as one of the main presenters. I had some very direct questions which were restricted to the topic at hand. And I believe a mutual appreciation for professionalism was reached.
During that same ICED Conference, I was approached by Dr. Ken Weiner, the CEO of the Eating Recovery Center. For those who have read past articles, you may recall that last year I published a number of articles on ERC, most of which were scathing and derogatory. Dr. Weiner approached me, we shook hands and had a very frank discussion. We both agreed that in the future, undoubtedly we would continue to disagree. But, I also stated that in the future, if concerns were brought to my attention, I would first contact him to see if the matter could be addressed in a private forum.
This scenario happened approximately 2 months ago. I was approached by a family which had issues with ERC with regard to their daughter who was then receiving treatment in ERC Denver. As I had represented to Dr. Weiner, I reached out to him via email. He immediately responded. The next day, I spoke with the medical director of ERC Denver. And we resolved the situation to the families’ satisfaction. No articles were written. This would not have happened had Dr. Weiner not approached me in New York.
The reasons supporting the manner in which an article is written are not always open and obvious. They often include subtle nuances not realized until a later date. And sometimes, the audience for whom the message is intended is not always apparent on the surface. It only manifests itself later.
Fourth, even still, your article came out as hateful and angry. That is not acceptable and don’t you think it needs to stop?
In this case, the underlying premise with regard to “hatred and anger” is not entirely accurate and the “tone” of each article is dependent on its course … and the true intended audience.
Hate is an emotion which takes far too much effort and energy to maintain. The vast majority of time, hate is a wasted emotion that only feeds upon itself creating further divisiveness.
I certainly do not hate Ms. Collins by any stretch of the imagination. To the contrary, I have found her to be a passionate, resolved warrior. I respect how she has built up F.E.A.S.T. and has helped families in numbers too extensive to even possibly list. And when that is the standard a person sets for oneself, it is very perplexing as to why obviously incorrect information would be disseminated under their watch.
Listening to and understanding opposing points of view can be an art form. It is often a difficult concept since it goes against the grain of a person’s own, closely held beliefs. It can be uncomfortable and it is unfamiliar. And it is becoming increasingly rare.
Most people go through life embracing only their own viewpoints and staying close to people of like minds. With the proliferation of and dependence on the internet, the vast majority of people are drawn to information and beliefs which bolster their own views. We seek out like minded people. We seek out like minded ideas, articles, and information. Most people live life through the microcosm defined by CNN on the one hand or Fox News on the other. As a society, we find ourselves caught in a trap of only knowing what we know without the wisdom to understand that we don’t know what we don’t know … or even being open to the possibility that our views may not be completely accurate.
Only a small percentage of people seek out viewpoints and opinions which differ from their own. They are the explorers of the mind seeking information and knowledge. They strive to be educated. They strive to be enlightened. They strive to learn more about those ideas and vision which differ from their own. They know the universe contains infinite treasures and knowledge to satiate all desires both subtle and gross.
As for being angry …
You’re damned right I am angry. As any parent should be who is involved in the eating disorder industry or community.
I am angry that there is no vision to unify under one spectrum of eating disorders and present a united, collaborative front to mainstream society.
I am angry that so-called generally accepted standards of care are being dictated by insurance companies and not the brightest and the best minds in the eating disorder industry.
I am angry that even treatment professionals and clinicians cannot agree on the best way to treat this insidious disease.
I am angry that the top professionals in the eating disorder industry do not have, or will not generate a public forum where their differing views and experiences can be debated and discussed before the eating disorder community and mainstream society.
I am angry that blatantly false information in the industry can be disseminated and then embraced as if it were gospel truth.
I am angry knowing that the best way to fight this disease, that is through greater scientific research which leads to strong, proactive, informative, and intelligent treatment protocol remains elusive.
I am angry that accountability over counselors and clinicians is lacking.
I am angry that those organizations tasked to be the liaison with Congress are recalcitrant and have chosen to ignore their sacred duties and obligations to families suffering with this damnable disease.
I am angry that October 30 will mark the third commemoration of when my beloved daughter breathed her last.
I am angry that the eating disorder industry appears to be adrift and rudderless.
I am angry that the eating disorder community is allowing messaging that is irresponsible, not based on research, nor peer reviewed studies nor scientific facts and which arguable do not even apply to eating disorders to slowly ebb into the eating disorder mindset.
I am angry that while the eating disorder community stumbles along aimlessly, without a unified direction or collaborative purpose with little to no federal funding, on September 30, President Trump signed The Autism Cares Act of 2019 which recommits to spending a total of $1.85 billion over five years to research and study of Autism. I do applaud those persons with the strength, vision and wisdom behind the Autism movement and am angry that the eating disorder industry cannot demonstrate similar qualities. (More on that in a future article.)
I am angry that we insist on accepting a standard that does not even remotely approach a standard of excellence.
I am angry that segments of both the eating disorder community and eating disorder industry have made it abundantly clear that for them, “the image of the messenger is far more important that the power of the message.”
I am angry that the eating disorder industry is an annual, multi-billion dollar industry and the only parties treating it as such are the private equity firms which own the residential treatment centers and the insurance companies.
I am angry that we cannot disagree on issues … without being disagreeable.
And I am angry as hell that still … one person dies every sixty-two minutes as a direct result of this insidious disease.
And you should be too.