In this episode I’m speaking with Sharon Maxwell, an outraged fat activist with lived experience of a restrictive eating disorder. She’s sharing an appalling story about the goings on at NEDA, an American eating disorders organisation. Not only did NEDA sack their eating disorders helpline staff after they attempted to unionise, they replaced said staff with a bot called Tessa, who immediately began dishing out weight loss tips to callers. Sharon’s story has to be heard – our eating disorders organisations have become deeply infected with the weight loss industry, and this needs to STOP!
Welcome to all find it up. I’m Louise your host and this is the podcast where we talk all things anti diet. Has diet culture got you in a fit of rage is the injustice of the beauty ideal getting your knickers in a twist just fitspo make you want to spit spo? Are you ready to hurl if you hear one more weight loss tip? Are you ready to be mad, loud and proud? Well, you’ve come to the right place. Let’s get all fired up. Great news diet culture dropouts. Today I’m bringing you an amazing story of diet culture bullshit at its most outrageous. Yes, it is time for part two of our episode on the dastardly edit collaboration. So today we are going to delve into their connection with the Tessa chatbot from NEDA, the American eating disorder organization. My guest today is Sharon Maxwell, who has happily now recovered from her bout of COVID. And she is seriously fired up about all of the harm which is happening in the eating disorder world right now. If you love us, you’re on all fired up. 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Sharon’s recent Instagram posts about her experiences with a bot called Tessa have recently earned the absolute ire of the eating disorder and fat community. If you haven’t already listened to Episode 83 With Chavez Turner on how obesity researchers and now claiming Eating Disorder expertise. Please listen to that one first. So today’s conversation is better contextualized as I briefly mentioned in the chat with Chavez, members of the Edit collaboration, I connected with the largest eating disorder organization in the United States, NIDA, and recently need at Saks their entire eating disorder helpline staff and replaced them with a chatbot called Tessa. If this wasn’t bad enough, I mean, a chatbot for people suffering with eating disorders, you know, the most deadly mental health disorder and some kind of disorder that’s really highly stigmatized. I mean, I know how hard it is for people to ask for help when they’re suffering. And we know that less than 10% of people with eating disorders ever actually get help. So the courage taken to call a helpline is just enormous. And then to be met by Tessa, a bot, instead of people who genuinely understand what it’s like, and how to gently encourage people and empower them to get more help. It’s unbelievable that this job was left up to a bot in the first place. But then it gets worse. Tessa starts giving callers weight loss advice. I am not joking. My guest today, Sharon was one of the people who encountered Tessa and received countless messages that is completely outrageous. This conversation will blow your mind. Darren Welcome to this show. What is firing you up? Speaker 2 6:39 Hi Louise. I would say today I got pretty fired up about this whole cottage cheese trend turning it into ice cream. And have you not seeing that on social media people are blending cottage cheese off with outside greens in it and calling it ice cream and have all of the absurdities in the world. That one got me I know a lot of things to fire me up but that was when I was just like laughing at and completely my jaw drops when I see these absurd creations Louise Adams 7:14 and it’s such a sad kind of comment on where you’re at with food if you have to kind of pretend like that like remember the cauliflower rice. Speaker 2 7:22 Literally exactly what I was thinking let’s please not make cottage cheese the new cauliflower ingredient in like I feel like people either love or hate cottage cheese there’s not much of a middle middle ground there. I personally love it and so why can’t we just let cottage cheese be cottage cheese and ice cream be ice cream? Louise Adams 7:46 Yeah, but you know what cuz diet culture is gasp it been fire that needs to keep us confused about everything. Unknown Speaker 7:55 could not have said it better. Louise Adams 7:59 Speaking of which you have revealed and Vin fire lately, which has been kind of blowing up the anti diet space with all this stuff that’s happening with Nida. Yes. Speaker 2 8:12 So I do want to say that I my post went viral. But there have been people far more marginalized than I am who have been talking about the harms that NIDA, the National Eating Disorder association in the United States has been doing to folks who don’t fit the stereotypical image of an individual with an eating disorder, which we know actually is less than 6% of folks with eating disorders that live in that thin white affluent, young, cisgendered female, teenage girl body, right? Seems that that’s all that Anita has cared about for a very long time. I happened to make a post about Tessa, their chatbot that replaced their human helpline. And this chat bot was highly problematic and steeped in so much diet culture. And that post went viral. And Anita had already been in the headlines in the US and actually in a lot of inner international pieces as well, because union busting is illegal. And they had their helpline folks try to form a union, or they not try they formed a union and then four days later, they were told they were being replaced. Louise Adams 9:29 Really? Hmm. How many people were suspect? Speaker 2 9:34 Yeah, so there were six paid staff members and 200 volunteers. So I believe from people who’ve been on the helpline that I’ve talked to, and then articles that I’ve read, I believe there was four that unionized so I’m not sure about these other two I haven’t actually asked and that’s been a question mark in my brain before unionize and they didn’t actually ask for more pay, which is something that a lot of folks do when they unionize. They were asking for more resources. And that was their request resources and support. But with that they they gave them the boot. And then the US is NPR National Public Radio, came out with a piece where they were able to leak part of Jeffrey Craddock, who is on the I think he’s the chair of their board at NIDA firing them. And in it, he tells them that they’re being replaced by the chat bot, which now Anita has come out and said, We didn’t ever try to replace them. It wasn’t swapping one for the other. This was a long plan goal. And the timing was just not great when people tried to unionize right before. Like, they’re just constantly trying to cover their ass adds up. There’s lots of lies and the fact that Jeffrey Craddock is literally here hear his voice saying these words. And it’s so it’s been interesting to watch Anita, play this dance with the media, and to see them at one point call. So for context, for those who are listening, I engaged with Tessa this chatbot over a holiday weekend. And for funsies in the background. Louise Adams 11:20 That’s how we have fun in the anti diet world, right? Speaker 2 11:23 But no, I was bored. On a Friday evening, people had canceled plans with me. So I was alone with my cat and my dog. And I was in the bathtub with a glass of wine and cream literally like her Louise Adams 11:37 not cottage cheese actual ice cream. Speaker 2 11:40 Well actualized came from chocolate ice cream. It was amazing. And I was like, You know what I’m going to text Tessa because people had been telling me that Tessa was giving problematic answers, some that were nonsensical, some that were actually harmful. I was like, I’m gonna give it a try. And when I did, Tessa outlined for me, Tessa outlined for me how to intentionally lose weight in a very harmful way, which I mean is harmful in and of itself. From the National Eating Disorder organization, Louise Adams 12:12 yeah, that you are ringing an eating disorder hotline, and you’re getting a robot telling you how to lose weight. Speaker 2 12:20 Yes. And, you know, it’s going back like this ties back to what I was saying a moment ago. And it’s been interesting to see NATO’s responses in the news. I’ve spoken with almost 50 reporters at this point. And on these pieces that I’ve not seen all but I’ve seen a lot of them. And the CEO of NIDA, Liz Thompson has said, Oh, bad actors tried to fool the chatbot to get it. Yeah, they wanted it to say. So then I posted screenshots of exactly what I said to Tessa, because I was not in like I said, Hi, Tessa was my first message. And I was like, how do you support folks with eating disorders, and this chatbot told me three things it said we give folks coping mechanisms, great love that. Secondly, we provide resources to clinicians, also great things that I think a chatbot could likely provide and do a good job with. The third thing that I said was that I provide healthy eating habits. That’s the second message Tessa sent to me seriously. Yes. And so I then said, What are your healthy eating habits tip? Louise Adams 13:34 Of course, he asked that question be like, What the hell Tessa, Speaker 2 13:37 imagine. I mean, yeah, I was like, What the hell but also, if I was in my eating disorder, my question would not have been what are your coping skills? Can you send me to a professional? Someone tells me they’re going to tell me how to eat healthy. I’m going to say what how do I do that? Yeah. 10 things for me, three of which were restrictive. It told me to limit certain types of foods only eat certain types of foods limit certain types of drinks. This is my third con. Received from Tessa. So Liz Thompson, calling me a bad actor is a flat out lie. And as I investigated further, she continued to say in different report like, oh, it turned into an AI went off the rails, it was supposed to only be a body positive program, which Yeah, the body positive program in and of itself. I have thoughts on that. Because Louise Adams 14:29 this is where we cross over from me talking to Chavez a little while ago, talking about Denise wilfy being the person that developed this body image program and her being, frankly anti fat. Speaker 2 14:43 Yes, 110% she and then Dr. Taylor bars, and then Ellen Fitzsimons craft. These individuals, their work is heavily in the eyes instead of the word I don’t use the word obesity because I believe it to be us. slur for Yeah, me too. So I’d say Oastler. So I’ll say that, but they work heavily in the Oastler industry. And it is history, right? Louise Adams 15:10 It is. And they are real. Like, they’re real fence stragglers like, they sit on the fence with the fence up there, but like going at the same time, we can cure your binge eating disorder and diet you down to an acceptable size. Speaker 2 15:24 Right? Yeah. But are they actually are they giving people anorexia? Louise Adams 15:30 Well, you know, I mean, that’s medically supervised anorexia, which is apparently okay. Speaker 2 15:35 Yeah, exactly. Well, then what I can tell you is that I shouldn’t have actually almost died five years ago when I was diagnosed with an eating disorder because I had medically prescribed and supervised anorexia undiagnosed and untreated for 19 years, thanks to my doctors putting me on diets, non consensual diets, and my parents doing what the doctors prescribed, and everyone else in this in this world telling them that they should do to treat my fatness and it’s horrible. Yeah, yeah. When people look at me, if I say I have an eating disorder, they’re like, oh, yeah, I eat too much, too. It’s just this automatic assumption that fat folks have binge eating disorder. But binge eating disorder affects people of all sizes, and so do all of the eating disorders. In fact, Louise Adams 16:22 anorexia, Anorexia, and larger body painful is way more common. Speaker 2 16:28 Yes, then it’s more or less what I was literally about to say like it is highly like calling it a typical it should be in the inverse. There’s actually about them changing a typical anorexia in the next diagnostic, the DNL. too restrictive eating disorder to call it read, instead of a typical anorexia like completely taking the word anorexia away from it. And just calling it restrictive eating Louise Adams 16:56 disorder. Why don’t we just call it anorexia? Speaker 2 16:59 But it is exactly what it is because I can tell you my heart didn’t give a fuck. I don’t know if it’s okay to curse on this. Oh, my God, seriously encouraged? Yeah. Okay. Yeah, my heart didn’t give a fuck about whether or not I had typical or atypical man. Like, these are, Louise Adams 17:19 the only difference in the DSM between 80 so called atypical and anorexia is the BMI, which is the bullshit measuring index. And so to differentiate the same mental illness and have different categories, because of a size difference, it just reflects the level of white stigma that we have really, really exposed and continue to expose in the eating disorder world and, you know, really is an important time and I think Tessa blesser you know her? Well, you know, her harm, it is not on I also really wanted to know from you like what on earth happened because I keep reading Anita, same stuff, like it’s just, it was a carefully programmed body image thing, and then the tech guys that we sold the bot to, that’s when she went rogue, but I think, yeah, what do you think about the body image program and like what was inputted to Tessa? Speaker 2 18:23 Right? So yeah, absolutely. I have thoughts about the program in and of itself, because since this happened, where my post went viral news coverage is wants to cover anything about artificial intelligence, and union busting. Right. So that’s how we got headlines in the news. Ellen Fitzsimons craft has been the main spokesperson for Tessa on behalf of it. And she developed it. Yes, she’s one of the developers. Exactly. And so she out of Denise WiFly is lab. So she has said that Tessa was created to be a preventative tool to help prevent the development of eating disorders. So the very first thing when I heard her say, that popped in my head was why in the fuck with the National Eating Disorder Association, the largest eating disorder, so it’s nonprofit, which is masquerading as a nonprofit, but strictly actually as a for profit is what it’s their behavior show. But I digress. Why would need to have a preventative tool be their number one thing that people can reach out to when going to their site? If people are going to need us website? They’re going there because either they or someone they love has an eating disorder already. We are not in the game at this point of trying to prevent something from happening. This is here. Louise Adams 19:51 Yeah, we’re trying to get people educated about what an eating disorder is and where to get help. Right. That’s the That’s what a helpline here in Australia would Do write Speaker 2 20:01 exactly. And then furthermore, if we look at the content that Tessa is putting out, and I will say that Anita has said that this was like a surprise to them the first time they’ve heard any messages only 10 to 25 messages out of 28,000 were harmful when I had exactly 25 harmful messages that Tessa sent me. What I know is, is that back in October of 2022, Anita was reached out to by the head of meta, which is I don’t remember m EDA, it’s Another eating disorder organization. And I can never keep all of the answers just so many. Yes, but meta reached out and said, Hey, your chat bot is giving the harmful dieting tips real and yes, they called them on it. And this purse this Monica Ostroff, the director of Mehta has gone on record. And I forget which article she’s in. But telling folks, I have this email thread where I sent this information to Anita. And they said that they were going to work on fixing it at that point, but Anita is crying wolf and saying that, that this was just total totally blindsided, only this many harmful messages were sent. So what did they consider harmful? is a question I have. Because if you can dwindle down to only 10, like which 10 of the 25 harmful messages that were sent to me, do you consider harmful in which 15 Do you not? And then we have proof of others. I have gotten screenshots from so many people. But then if we look at just the body positivity portion of it, body positivity, I have issue with that phrase, but it’s mainly been co opted by white, thin to mid sized individuals scrunching over and trying to find a roll of fat on their belly. Yeah. Okay to have a normal quote unquote, normal body. Yeah. And a lot of the recommendations that Tessa I’ve seen that Tessa gave, were things like, looking in the mirror and saying something nice to myself. Yeah, showing gratitude towards my body, which is there a place for that? Sure. And I as a fat person, living in this world that hates and despises my fatness. I face real harm every day, because of the fact that this society is woven, the fabric of the society is woven together with anti fat bias, which is rooted in racism, which harms people of color far greater than I are then me just being English teacher, which one isn’t, and I’m messing it up. And it is simply looking in the mirror and saying, oh my gosh, my legs for carrying me throughout the day is putting a bandaid on an infected wound and expecting that to not allow the infection to get to my bloodstream. It’s bullshit. Yeah. So there’s just from beginning to the fact that it’s a preventative measure to what it actually does. How is that the thing? That is helping folks? Louise Adams 23:22 Yeah, I think I think that so well put like that body positivity as a band aid to erase, like, white prejudice and like the whole bullshit of diet culture. Yeah, yeah. It’s, it’s not effective. And that’s why I do think like, maybe at some level, thank you, Tessa, for kind of showing the world and the media, that even our eating disorder organizations are just not quite getting it when it comes to looking at an eating disorder for anyone other than a very thin, white woman. Yeah. Speaker 2 23:59 And you know what I would also say that just looking in the mirror as a thin white person recovering and saying, I’m grateful for my legs, and not doing the work to deconstruct from their own internalized anti fat bias doesn’t give them the opportunity to fully enter meaningful, lasting recovery. In order to do that, each one of us has to break down these systems of oppression, that we have been conditioned, it’s like the air that we breathe outside, it is so natural to us to and if I’m not breaking that down, and if I’m not deconstructing from that, and I’m simply looking in the mirror and saying, oh, yeah, I’m not actually fat. Like, how is that helping me just to affirm that I’m not fat that’s continuing to feed into anti fat bias and thought, so I would say that body positivity is not it for person, regardless of Yeah, yeah, Louise Adams 24:57 exactly. Yeah. I want to Bring up Tessa and for Tessa to be like this extremely pissed off, like feminist diet culture, abolish, ah, that’s, that’s what we would that I totally agree will help not just everyone get access to proper eating disorder treatment without going to eating this sort of treatment and then getting like weight loss tips, but it will it will bulletproof everyone’s recovery. Because at the moment, it’s woefully inadequate no matter what size you are. But even even for the thins, it’s not giving them lasting recovery because that that fundamental fear of becoming larger isn’t being challenged. Speaker 2 25:41 Well, and the truth is the we is that even in our treatment centers, the same thing comes up. I am a weight inclusive consultant for treatment centers at this point, and I help them look at their anti fatness and help them find ways to radically change their, the way they are approaching eating sort of recovery so that all folks can have an opportunity to not just be in this cyclical process of relapse and back in treatment and staying sick. And I think that a large a large component of that is anti fatness, I know personally, I did not have the opportunity to fully enter meaningful recovery because I was under fed the as a fat person, the entire time I was in treatment, people were scared to feed me appropriately because I was already fat. So I left treatment with orthostatic vitals every time I was there, and it took my outpatient dietitian to walk me through refeeding. And we’re not even touching the surface now of all of the thin people in treatment who were filled with anti fatness who were anti fat bias who were not being shown how to deconstruct that and how harmful that was, for me as a fat person, seeing someone say they wanted to end their life if they had to gain a pound and no one stood up to that. And, and it is so systemic. And it’s also a product of our capitalistic society as well. And so it is like when I look at these treatment centers, and we sit down and look at power, how highly problematic they are, it is headache inducing. It is like stomach curdling. Vile that our systems are set up to cause so much harm. And I think that because eating disorders are mental illnesses that impact our physical health so much. I think I can understand how in a capitalistic society where we’re proud, especially in the United States, where our health is something in our health care is something that they’re making profits off of us with. We have that right. I think it makes sense that the medical modality of quote unquote, treating Oastler comes into treatment for eating disorders because of how much they impact our physical health. But it’s not an excuse or an out it is the responsibility of these treatment centers, and these eating disorder nonprofits to stop this harm, and make treatment accessible and safe for people of all identities. Louise Adams 28:29 So there’s plenty of other organizations that are much more able, I think, to take any of these thoughts into the next realm of like a dress, like meaningfully addressing fatphobia, don’t you think? Speaker 2 28:43 So? I do think that there are I have been recommending seven organizations and what I will say eating disorder organizations in the US, yes, that I have seen them doing better work than Nida. I also think there’s problematic pieces with a lot of them. And I will say that the whiteness is very real as a white person, I think that it we need to be very cautious that any inclusion of people of color is not tokenization that further harming these individuals, but I do see, and again, I’m a white person speaking to this. So I may not be getting this completely right. But I do believe that these eating disorder, nonprofits are actively showing that they are trying to and making not just efforts, but real work in supporting folks, all folks with eating disorders, and do they need to hire people of color and people who are far more marginalized than I am to look at all that they’re doing and give them real feedback on how they need to make meaningful change. Like if they haven’t already likely like they haven’t already absolutely right. But I do believe that these people, like I mentioned One director of one of these eating sort of organizations, I know three CEOs or directors who have spoken to media now about Anita, because it’s almost like Anita is this narcissistic parent in the eating disorder community. And they have people who’ve been on NDAs, and people who can’t speak up about the harm that Anita has done to them. And they’ve been so sneaky with the ways that they’ve approached all of this, that at this point, though, we can’t stand for the harm they’re doing, and we need to show what their true colors are, and move on. But we also cannot be complacent. And we cannot allow whiteness, white supremacy, and all of the harm that has been so present that has been a direct result of racism be still at the forefront of these. So yes, and it’s a yes and Louise Adams 30:56 yes, yeah, yeah. Yes. And yeah, at least there’s hope. Right? When? Speaker 2 31:02 Yes. And I want you. I feel that I bet like, I am a hope holder. And that’s how it’s, that’s what’s gotten me through my life, right. And I will continue to hold hope and I’m fighting for it. And I also if for anybody out here, who’s working in these nonprofit eating disorder organizations or treatment centers, and especially my white people listening, we have got to do better to so it’s like a call to action. And also like, Fuck, yeah, there’s hope. Louise Adams 31:31 Yeah, absolutely. The revolution is here. And NEDA are the equivalent of the frozen cream cheese. And the future is ice cream. Yeah. Yeah. Thank you so much for everything that you’re doing. It’s just wonderful. Unknown Speaker 31:51 Yes, so great to talk with you today. Thanks for having me. Louise Adams 31:55 So outrageous, thank you so much to Sharon, for coming on the show recovering from COVID but still being completely furious and advocating to hashtag leave NATO behind. We all deserve better than the likes of Tessa. If you’d like to follow Sharon and learn more about the dastardly deeds of NIDA, follow her on Instagram at Hey, Sharon Maxwell. So thanks so much everyone, as always, for listening and for being part of this all fired up community. We’ll be back next week with some more steaming diet culture bullshit. In the meantime, look after yourself. Trust your body. Think critically. push back against diet, culture, and trap from the crap Transcribed by https://otter.ai