THE WEEK THAT WAS

Last week was eating disorder awareness week. And yet, the week was unlike any other prior “eating disorder awareness” week. Events transpiring in 2020 shook our nation to its core. And similarly shook common sense out of many organizations. Small but vocal aspects of society called for dismantling law enforcement. Socializing our communities. Destroying certain aspects of our history. Cities burned. Every type of “ism” called out as being reprehensible. Social justice run amuck leaving behind reason and logic.

Perhaps moreso than any other mental health community, the eating disorder community fecklessly rushed headlong into the fray. Last week, organizations and persons under the NEDA umbrella embraced anecdotal stories discussing black mental health matters, insights from the LBGTQ+ community, voices from the higher weight community, caregivers.  Organizations and persons conducted virtual yoga classes, talked about implicit bias and systemic oppression, thin bias, inclusivity and diversity. Ableism, healthism.

The following is a list of some of the “lessons and insights” that were spewed forth by persons under NEDA’s umbrella during the week:

  1. Some advocates opined that they wished the default in healthcare was that everyone was diagnosed with disordered eating.

2. Simply living in a diet culture equals living with trauma.

3. We are all victimized and oppressed by diet culture.

4. Everybody has a destructive relationship with food.

5. Society has formed its opinion of eating disorders by looking at someone’s “skin and bones in a hospital getting treatment.” [direct quote]

6. Atypical anorexia exists only because of fat phobia.

7. If we provide treatment to persons with the “most privileges” it doesn’t help persons with the “least privileges.”

8. Treatment providers tell thinner patients in front of fat patients that fat patients are “disgusting.”

9. When we are looking at genders, there are an infinite number of genders.

10. A person can try to shape themselves into being a man and a woman at the same time and that they can be neither.

11. We can impress upon ourselves that “toxic binary” is the only framework we have when it is not accurate for the population when we have so many genders.

12. That media portrays eating disorders with the most extreme version as the thin white woman and that’s not fair.

13. Apparently, another “privilege” is having a really good treatment team.

14. When we’re creating recovery, when we’re creating treatment, when we’re creating policies and guidelines they need to be made for the most marginalized person and that is the person who suffers from every marginalized identity.

15. We don’t need to be making recovery guidelines for cis white heterosexual men and women because they are just the top of the privilege chain.

16. We must envelope marginalized identities who are absolutely more at risk because they’re more likely to go under the radar and more likely to be ignored and gas-lit by families and medical professionals.

Those were the highlights of NEDA’s contributions to 2021 eating disorder awareness week.

We also listened to discussions concerning a lack of BIPOC and LBGTQ+ therapists and treatment professionals. We heard about a lack of treatment options for BIPOC and LBGTQ+ persons. Treatment that is too expensive. Treatment that is not equally available to all. These were and are certainly legitimate issues. However, these issues are societal in nature and are not unique to the eating disorder community. These broad based societal issues do not make eating disorders a social justice disease. They are being discussed by every other mental health and medical advocacy community.

Oppression of marginalized persons permeates society at large. The same issues are being discussed pertaining to admission to private schools, universities, job opportunities. Because the issues of race or sex or gender discrimination impact not just society in the United States as a whole, but is present on a global scale, it is certainly not unique to eating disorders and its community. But, we fail to address that point.

We also failed to focus on the issues unique to eating disorders.

No generally accepted treatment standards? Ignored.

Clinicians not collaborating with research doctors? Ignored.

Issues inherent with private equity ownership? Ignored.

The importance of dads in the recovery process? Ignored.

The incredibly high mortality rate of anorexia? Ignored.

No research based bills pursued in over eight years? Ignored.

Those are issues unique to eating disorders. All ignored.

And this past week, one can’t help but wonder why NEDA chose to ignore these issues and intentionally attempted to erase the line separating broad based societal issues from issues particular to the eating disorder community. What motivation could NEDA possibly have for undertaking this action?

Some people are aware that NEDA’s future will be determined by a federal district court judge and a jury based in Dallas, Texas. A lawsuit that when it reaches its inevitable conclusion, could result in NEDA dissolving. One of the allegations is that NEDA surreptitiously changed its mission to emphasize social justice and political issues without disclosing this information to its donors. That the person leading this vainglorious charge not only did not trust the medical community but believed they are doing tremendous harm. If NEDA continues to portray itself as the voice for families suffering from eating disorders, it has the absolute, non-delegable duty to be open and transparent with its donors regarding its changed mission. NEDA failed to comply with this duty.

One only needs to consider the line-up of social justice activists NEDA paraded during eating disorder awareness week and the topics discussed. Contrast that with the absence of  educating the general public of the dangers of each type of eating disorder and how best to combat them. When that comparison is made, NEDA’s agenda comes more into focus.

As NEDA invited “everyone to have a seat at the table,” an obvious omission became clear. NEDA posted a graphic, “Who’s at Your Table?” NEDA included, “Someone Who Makes You Smile,” “Someone You are Proud of,” “Your Recovery Hero,” and of course, “Favorite Body Liberation Activist” as well as a few other entities. So what is missing?

Perhaps, “Your Family Member Who Loves and Supports You.” In fact, the importance of family in the recovery process, the positive aspects of Family Based Therapy, parents, siblings are not just missing from this Table Graphic but were largely absent the entire week. Except for a very nice attempted save by the Caregiver group on Thursday, the incredible importance of the family structure was not only not discussed in detail, but was not discussed at all. And one must wonder why. Our families are the ones who are suffering.

And if you are a dad, forget it. You are merely a cis, white heterosexual binary person basking in the glow of your privileges and not deserving of mention or respect.

One must wonder how we have gotten so far off base? Isn’t the end goal the same for everyone, that is, eradicating eating disorders? Shouldn’t we all be working toward that end goal?

How did we let personal agendas sabotage this end goal? Are the jealousies, insecurities, fear and ego that permeate some of our perceived leaders so great, that they cannot listen to new ideas with interest and open minds?

Some incredibly intelligent, passionate people employed by companies with great financial resources have been driven out of the eating disorder industry or have left in frustration. Why? Why do we continue to get no research funding from the federal government? Why the dysfunctionality?

If an entrepreneur decided to bequeath $10 billion to the eating disorder community and industry with just one provision … that the eating disorder industry need only come to a mere consensus on developing generally accepted treatment standards and the most effective way to spend those proceeds, would we be able to?  Would the REDC/EDCoalition, iaedp, NEDA, AED, and Equip be able to look past all differences and accomplish this? I think we all know the answer to these questions.

No accountability. No demand to perform or perish. No demand for excellence. Little, if any collaboration. Little, if any transparency. No agreed standards of treatment. Ignorance of how companies outside of the eating disorder industry could assist in developing treatment protocols. Jealousy. Insecurity. Greed. Ego.

Sansón Carrasco, The Knight of Mirrors has arrived. And like Don Quixote, the eating disorder community fails to recognize their own metaphorical reflection in Sansón’s behavior as well as their physical reflection in the mirrors on the armor.

And our children continue to die. In fact, I challenge any so called leader in the eating disorder community to find a way to meet with any mother, meet with any father of a child who has died from eating disorders in the last year. You look them in the eyes and talk to them. Ask them what worked … and what did not.

Then, you tell them you are doing your best. You look into their eyes. And you tell us all what you will see. And then look at your own hands. And what do you see Lady Macbeth?

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