Today, World Eating Disorders Action Day, we hear from Abbie and fellow workers of Helpline Associates United about their efforts to provide quality care to their community – in the face of union-busting by a faulty, dangerous chatbot currently all over the news. Their struggle at National Eating Disorders Association, a traumatized, flawed organization, is a clear case of the need for trauma-informed organizing and a helpline built from the ground-up.

The Worker’s Perspective

By Abbie Harper of Helpline Associates United

I trained in theater and dance, worked in improv and sketch comedy, and have lived in New York for almost 20 years, so I’m not afraid of speaking truth to power. And like many fellow NEDA Helpline workers, I come from direct experience dealing with the reality of eating disorders. Getting support from folks with lived experience made a huge difference in my life. So, unlike most jobs in most tech-enabled service organizations, my coworkers and I care immensely about providing quality support to our community.

In honor and celebration of World Eating Disorders Action Day, my union, Helpline Associates United, put out a statement about NEDA’s union-busting, urging our community to find better options for care.

The contrast between NEDAs mission and their recent retaliation really makes it clear that both eating disorders and workplace toxicity thrive in isolation, and that solidarity is the greatest tool for change. Upon my initial hiring in January 2022, NEDA leadership appeared to be welcoming and inclusive. I went through Helpline training super fast, and everyone was encouraging. They officially tasked me with advocating for both helpline and volunteer needs. Then, after months of expert carrot-dangling, leadership asked us to forfeit our last two summer Fridays after experiencing burnout all summer long, so we took our first collective action: two of us said no. Later, we took another action: we announced our intention to form a democratic union for the purposes of collective bargaining.

NEDA’s retaliation was no surprise. They failed us and our community by refusing to support a psychologically safe workplace, by firing us instead of recognizing our union, and by attempting to replace our humanity with a chatbot. Importantly, the chatbot isn’t a misuse of generative AI. The chatbot can’t care because it simply parses stock language, which NEDA claimed would prevent mistakes, but the results are even worse: it gave people dangerous, fatphobic advice and had to be pulled almost immediately.

Under the guise of a sound business decision, NEDA abandoned the tens of thousands of people struggling with eating disorders who reach out each year which left a hole in the community only human empathy can fill. Many organizations say “I’m helping!” despite being dysfunctional and having no ethics, but as a mental health nonprofit, NEDA’s gaslighting and bad-faith treatment of workers makes it extremely, uniquely clear that we need trauma-informed care work – as well as trauma-informed organizing.

We envision a world where a trauma-informed eating disorders helpline exists. Today is World Eating Disorders Action Day, and we need a change when it comes to advocacy and support for folks struggling with eating disorders. We are eager to share our statement and urge everyone in the eating disorder community to redirect all support, resources, energy, and time to those non-profit organizations committed to advocating for all people with eating disorders.

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Helpline Associates United Statement for World Eating Disorders Action Day

June 2nd, 2023

Yesterday, the National Eating Disorders Association (NEDA) shut down the helpline that supported the eating disorder community for decades.

We, Helpline Associates United, stand now and forever in solidarity with the eating disorders community. Our first and only purpose in this fight has been to provide you with the best, most accessible, and most ethical support possible. We are and always will be a union, with or without NEDA.

We organized for the ability to provide better service to our community because this work is deeply personal, and we care in immeasurable ways. But during our fight for a safe and sustainable workplace, it often felt like no one in management or elsewhere was listening, or worse - nobody cared. In the days since announcing our request for voluntary recognition of our union from NEDA, we’ve been amazed and humbled by the far-reaching outpouring of support for our union, and deeply moved that our story resonates with so many people. For the first time in what feels like forever, our concerns have been met with empathy, understanding, and validation - we thank you from the bottom of our hearts for caring.

NEDA management eliminating the Helpline and attempting to replace it with a faulty, dangerous chatbot named Tessa is a stain on the organization. NEDA leadership will bear complete responsibility for the consequences. Technology should never replace first line human support and NEDA is doing a great disservice to those in need of genuine empathy, understanding and community by putting them in Tessa’s “hands.”

In light of recent events, we feel it is imperative to expose the truth about our time working at NEDA. We are appalled that NEDA would shutter the helpline at all, let alone without some kind of tested support in place. But rather than invest in psychologically safe working conditions, trauma-informed training, and adequate staffing for the workers on the front lines, NEDA invested in a chatbot. This demonstrates NEDA’s strong preference for profits over people.

The recent spotlight on NEDA has exposed a problematic and troubling pattern of slighting the lived experiences of others and silencing dissenting voices, no matter the cost. NEDA’s refusal to prioritize our mental health and psychological safety exposes a clear pattern of ethical hypocrisy and an alarming lack of concern for the wellbeing of their own employees, volunteers, and the eating disorders community at large. NEDA claims this transition to Tessa is part of an evolution, not a revolution, but we fully and completely disagree.

NEDA says a chatbot cannot replace human interaction - yet, they have replaced human interaction with a chatbot. NEDA says there is no union busting - yet, they knowingly violated the National Labor Relations Act, eliminated our jobs and left a chatbot in our place. NEDA knew the workplace concerns we raised were valid - yet they refused to take meaningful action to help us best support ourselves, our volunteers, and our contacts. These kinds of statements are designed to cause confusion, and are classic examples of gaslighting.

The Helpline Associates who petitioned NEDA management last September for a safer and more sustainable workplace dealt with a months-long campaign of targeted retaliation. NEDA management created a hostile workplace rooted in lies, intimidation, harassment, humiliation, and bullying - all for requesting better working conditions.

As helpers on the front lines providing services and support to individuals, families, and groups who are in crisis, we are susceptible to this trauma vicariously as individuals, teams, leaders, and organizations as a whole. NEDA is a traumatized organization that has no interest in becoming “trauma informed” as evidenced by their knowing exposure of employees to unsustainable working conditions they only admit to behind closed doors.

The Merriam-Webster Dictionary defines a “bad actor” as a person or group who purposely (and usually repeatedly) engages in very bad behavior, such as causing harm to others. We no longer have faith in the National Eating Disorders Association to act in good faith on behalf of the eating disorders community. NEDA has positioned themselves as the leading and most trusted eating disorder advocacy non-profit, yet they have repeatedly failed marginalized communities including (but not limited to) Black people, people of Color, the LGBTQ+ community, fat people, and disabled people. Furthermore, NEDA is a mental health organization that refused to invest in the mental health of their front line workers. We have all witnessed how the current iteration of NEDA treats communities who dare to question them, even when they are communities they claim to serve.

To those who have felt invisible, we see you.

To those who have felt silenced, we hear you.

To those who have been bullied, we believe you.

To those who have tirelessly advocated for organizational accountability, we stand with you, and believe we need a change.

In celebration of World Eating Disorders Action Day, we urge you to take the following action with us:

We call upon the public and NEDA’s sponsors to direct their admirable support to other eating disorder organizations committed to the liberation of all people with eating disorders, including the following:

• FEDUP
• Nalgona Positivity Pride
• Project HEAL
• National Alliance for Eating Disorders
• ANAD
• and other members of the Collaborative of Eating Disorders Organizations

These organizations provide direct services and support to individuals struggling with eating disorders. We encourage you to reach out to these folks for help if you or a loved one are in need, and we urge you to energize others to do the same.