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Diagnosed with Complex Trauma and a Dissociative Disorder, Emma and her system share what they learn along the way about complex trauma, dissociation (CPTSD, OSDD, DID, Dissociative Identity Disorder (Multiple Personality), etc.), and mental health. Educational, supportive, inclusive, and inspiring, System Speak documents her healing journey through the best and worst of life in recovery through insights, conversations, and collaborations.
Over:
Speaker 2:Welcome to the System Speak Podcast, a podcast about Dissociative Identity Disorder. If you are new to the podcast, we recommend starting at the beginning episodes and listen in order to hear our story and what we have learned through this endeavor. Current episodes may be more applicable to long time listeners and are likely to contain more advanced topics, emotional or other triggering content, and or reference earlier episodes that provide more context to what we are currently learning and experiencing. As always, please care for yourself during and after listening to the podcast. Thank you.
Speaker 1:Alrighty. Well, we're back on the System Speak podcast here. My name is Dylan Crumpler.
Speaker 3:And this is Holly Crumpler. We're excited to be back. We haven't been here since November of twenty twenty two.
Speaker 1:Yeah. It's been quite a while. We did the short film, Petals of a Rose, which has been screened around the world now, and is being used in universities and by trainers of DID and clinicians DID in their trainings.
Speaker 3:So I guess I'll start by saying we're super grateful to you, Emma, for hosting the first screening that we ever did of Petals of a Rose within the System Speak community, and it feels like that was forever ago. I don't know. It's like we can hardly remember it, but that was like a year and a half ago in the fall of twenty twenty two, where you were gracious enough to host the first screening. And we had that screening and it was the film was so incredibly well received by those in the community who had had listened to who had watched it. And then we came on the podcast, and we Dylan and I did, and we did, a couple of interviews and actually so maybe just for a moment, if there's anyone that's listening who is not familiar with the film Petals of a Rose, I mean, Dylan, just maybe can you just comment on what the film is?
Speaker 1:Yeah. So the the the film is, it's fifteen minutes long, and it's basically it's like a 95% biography, my mom's life, Holly having DID, and, I made it as my senior thesis film at Chapman University's Dodge College of Film and Media Arts. If you don't know the name, you might know the people who have gone there. The guys who did stranger things and dear white people. They they graduated from Dodge College.
Speaker 1:It's an excellent film school, but I and I made my short film to, in fifteen minutes, you know, show what DID actually is like, what it what it what causes it, and what what it's like for somebody with it. And I did that because Hollywood has never depicted DID accurately. They're always depicting it as violent, sensationalized, and inaccurate ways. And so I'm like, hey. My mom has this thing, and she wasn't diagnosed until she was 51.
Speaker 1:And there were signs everywhere that, you know, even I picked up on growing up. So I just wanted to make a short film to show, you know, what it's like.
Speaker 3:I think you're pretty successful in doing that based on the the feedback that we've gotten about the film. And, you know, the the first screening in the system speak community, number one piece of feedback that we get from people, and it started with that screening and has continued to this day, is people say, I feel so seen and validated. That what's going on in their brain, you know, to have reflected back on them, back to them on the screen in a respectful and accurate way is just so empowering for people. And so once we got that initial reaction from the systems speak community screening, that gave us the kind of confidence of, okay, we need to do some other things with this film to get it out to the world. And that's really kind of what we've been up to for the last year and a half.
Speaker 3:We've, in the first really big screening that we did was at the Healing Together conference in 2023, and they had us back to screen it again in 2024. But when we screened it at Healing Together in 2023, you know, that conference is a hybrid conference in 2023. So there were people actually attending the screening in person in Orlando, but also in 16 countries around the world. And so people started sharing the film around the world. And I think at this point, the film has been watched by people in
Speaker 1:Oh, I don't know how many countries. I mean, a lot of countries.
Speaker 3:More than 60 to 100.
Speaker 1:I know. Yeah.
Speaker 3:So sometimes that data can be a little funky.
Speaker 1:It's confusing if somebody uses a VPN.
Speaker 3:Right. But it's it's a lot of countries.
Speaker 1:I mean, we've gotten people to reach out to us, offering to translate the film into 12 different languages now. Yeah. So, for subtitles and closed captions. So, you know, even if somebody is using a VPN, it's clear that, you know, we have Chinese, Spanish, Dutch, Norwegian French. French.
Speaker 1:We actually just had someone volunteer,
Speaker 3:last week to translate the subtitles into Swedish, so that's in process. So the reception around the world has been so incredibly positive. So we, you know, we did that screening at Healing Together and then we, that was 2023, And what also started happening is clinicians got very interested in using the film to train other clinicians because as we know, some people know, most clinicians get little or no training about dissociative disorders in graduate school, and so they really need to seek it out. I don't know what that experience was like for you, Emma, if you got any training at all on dissociative disorders in graduate school. Do remember whether you did?
Speaker 3:No. Yeah, that's pretty much the experience, right? So, when clinicians have seen our film, they're, you know, they're like this is awesome because since it's only fifteen minutes, it's a really good training tool. And so, Jamie Marich was actually the first, clinician who started using it in her training. She actually did in the beginning of twenty twenty three as well.
Speaker 3:She started using it in training. So as more people have seen the film, more clinicians have reached out to us and they're like, Hey, I'm getting ready to do such and such training. Could we use Petals of a Rose? And we always say yes because we want as many people as possible to benefit from the film. And so that's another thing that's happened.
Speaker 3:We've had a lot of clinician trainings and Dylan and I participated in some of them. Some of them we volunteered to do and, other people have asked us, so we participated in some of those trainings. Yep. But then I think what it got really, really busy here in 2024, because we screened again at Healing Together, and we also then got invited to screen the film at the ISSTD conference. And you wanna talk about what else happened, Dylan, in terms of
Speaker 1:the Well recognition? Yes. We won the media award audio and visual at the ISSTD, which was pretty spectacular. It's it was it's amazing to be, acknowledged by the ISSTD on this this film and the impact it is having and, our current our work for the future films.
Speaker 3:Yeah. That's exciting. And I know, Emma, you've you have been recognized by ISSTD with an award for the podcast, so that's exciting. The two ISSTD media award winners talking
Speaker 1:to each other. It was kind of a crossover episode.
Speaker 2:It was super fun to be there and get to cheer you on.
Speaker 3:Yes, we appreciated that. So, so that happened and then you know we got the award and we did a screening and that was a great screening. It was a
Speaker 1:really good screening.
Speaker 3:Yeah, it was to standing room only, that was fun and a number of the clinicians at ISSTD had not seen the film, so, you know, had the opportunity to be shared with many new people. And, some people had seen it, they, you know, stood up and shared how they were, had been using the film. In addition to, you know, clinicians training other clinicians, clinicians are also using the film in session with their clients, which is really awesome. Yeah. And that people have found that that's a good way to talk about what's going on.
Speaker 1:Then make sure to use the redacted version. We need to make that clear for people who haven't seen
Speaker 3:the Well, maybe talk about
Speaker 1:the two versions. There's two versions of the film because, you know, this DID is from trauma. I mean, there are plenty of, forms of plurality, but, overall, we recognize trauma as being, you know, one of the primary or main indicators of DID. And because of that, there is a scene where there's some intimacy, and Rose experiences a flashback to some of her childhood abuse. And so we have two versions of the film where one's the full film and the other is just, when that scene comes around, it fades to black and it sort of gives a brief description of, you know, the scene as I sort of indicated, and then it fades in for the aftermath.
Speaker 3:Yeah. And I don't think we said this, but the film both versions of the film are available for free. They're free they're free. They're on Dylan's website, just dylancoupler.com. I don't know, Emma, I can't remember if you do show notes with your episodes, if we can put that in there.
Speaker 3:Absolutely. Yeah. Okay. So, we can send you a few other things too that might be helpful. So, yeah, it's it's available for free on Dylan's website.
Speaker 3:Anyone who wants to watch the film, share the film, use it for training, it's available for that. So, how do we get into talking about the redacted version?
Speaker 1:I just wanna do oh, because you said you were talking they're supposed to share it
Speaker 3:with their clients. Their clients. Yeah. Yeah. So they generally wanna start with that redacted version.
Speaker 3:There's less chances to be activating. And so, yeah, the ISSTD conference was a really great opportunity. Also, we've just connected with so many new, you know, people in this space that we didn't know before. We have a lot of friends from Healing Together and, you know, other clinicians that we've connected with, but we made a lot of really great new connections at ISSTD and are excited about the opportunities, for the film to be used even more broadly as a result of that. Yeah.
Speaker 3:And we had another really big thing in April. It's been 2024 has been jam packed for us. Dylan and I did an an all day training event on April 12. We teamed up with three other clinicians and we went actually went live. We went up in up in person into Connecticut and did a hybrid training for about 100 plus clinicians where we showed Petals of a Rose, but I also shared a lot of my personal healing journey.
Speaker 3:And then we also showed a first cut of a new documentary that we're working on. I don't know if you want us to talk about that or if we want to talk keep talking about Petals of a Rose.
Speaker 2:Tell us we want to know everything go for it!
Speaker 1:Yeah so the documentary is basically, I watched 70 movies and TV shows, about, DID, from, say, October to this April 12 training. And just to, you know, get some data and research and figure out how is DID being depicted. I mean, I already knew it's not being depicted very well at all, but I I made a document the purpose of this documentary is you find out how what is the misrepresentation of DID in cinema and how is it having an impact on people with DID, and also clinicians trying to treat, and help those with DID.
Speaker 3:Yeah, because I think we, like Dylan said, know that the movies and television shows have not been helpful, but I think what's not necessarily clear to people is how much of a negative impact they have had directly and indirectly. So, actually at the Healing Together conference, we decided to, launch a lived experience questionnaire, and it's a questionnaire for people with DID, clinicians who treat them whether they have DID or not, and supporters of people with DID, and dissociative disorders more broadly. When we say DID, we really mean DID and OSDD, dissociative identities, is really what our broader focus is, just to clarify that. But when we launched this questionnaire at Healing Together Conference and asked people a series of questions to inform both this documentary that Dylan is talking about, but also to inform a longer version of Petals Over Roads that we're working on. But staying on the documentary for a minute, one of the questions we asked people was in this questionnaire was how have you been impacted directly or indirectly by the film and television portrayals of DID?
Speaker 3:And the stories that people told us, they're just heartbreaking. I mean, they're really, really heartbreaking how people have been discriminated against, and harmed directly by these media portrayals.
Speaker 1:Yeah. Like, it makes me wanna just dissociate just even hearing the stories Yeah. Of people who with who can dissociate being discriminated against in these ways. It's just it's appalling. Yeah.
Speaker 3:It really is.
Speaker 1:It's and so yeah. The the cut of the film, that we showed on on April 12 is basically, intercutting, you know, these testimonies of people and how these media portrayals have directly impacted them, intercutting it with how DID has been misrepresented in the various categories, and then we we make sure to correct, hey. This this is the myth, and this is the reality. People with DID are are often portrayed as violent and murderers. Only seven out of the 70 films I I saw were not violent, and I would not call any of them at all even though the seven remotely accurate.
Speaker 3:Yeah. And it you know, I think, like, we know this. Like, we know, hey. People with DID are not generally violent. There's no correlation between people having dissociative identities and being violent.
Speaker 3:It's actually more common that we're violent towards ourselves or that we hurt ourselves, not other people. But that is such a trope in all these films and television shows over and over again that people, you know, who have DID, when they disclose it to their loved ones, they freak we hear in this, you know, survey we did, frequently people will say that their loved ones will say, Okay, are you gonna hurt me? Mhmm. And and these can be people who, like, they were they're in long term relationships that they've never hurt them.
Speaker 1:Somebody was married for thirty three years and then, like, they didn't tell their spouse until 30 until 30, know, the thirty first year. And then ever since then, because the media portrayals, the spouse is, like Afraid of them. Afraid of them as I'm looking at them different. It's, like, it's the same me. It's the same person.
Speaker 1:It's just now you know. Right. This thing.
Speaker 3:And And they're so heavily influenced by what they have seen in these movies. So this cut these kind of stories were told by to us over and over again. And it was really just I think at the time when we made the first cut for this training, we only we only had, like, 70 about 70 people's, you know, questionnaires filled out. Yeah. But we had so many stories that were like that about people, you know, assuming that they were gonna hurt them.
Speaker 1:But there's other other implications too. Like, the another, common trope is that people with DID will just go out of their way to dress up every single time there's a switch, and that's caused people who who have DID. Like, one one person said that they're they're they shared it with their therapist that they think they have it, and then the the the therapist or clinician or whoever was saying, well, you're not, you know, speaking in all these different funny accents and you don't come in here dressed up differently, so I don't think you have DIE. And so it's like, you actually believe that somebody's gonna say, hold on. Let me just run to my car and just let me put on a new outfit, and then I'm gonna come back.
Speaker 1:I'm gonna just be behaving differently, like Every time I switch. And then it's these depictions, it prevents people from getting The help. The help they need. Absolutely. And, of course, then we have the the the visual hallucinations and confusion of this.
Speaker 3:Well, before you go to that, though, I think this this point that Dylan's bringing up about the misunderstanding that switches are going to be so extreme that clinicians are told, you'll know it when you see it. And that is emphasized by how the condition has been portrayed in the media. And so if clinicians have not gotten the training and all they've seen is the movies, then they are expecting that. They're expecting that they will be able to see every switch because it's going to be so obvious and it's going to look like it does in Sybil and Split in the other movies that we're talking about here. And it really has kept people from getting help, and also it's caused people to doubt their own diagnosis, which keeps them from getting help because they will see media representations and they'll think, well, that's not how I am, so I must not have DID.
Speaker 3:They're already struggling with the diagnosis and confusion about it, but then they see these depictions and they've seen nothing else that really looks like what their experience is. So it's really heartbreaking how much damage these movies have caused and we really want to shine a light on that. So our long term plan is to make a full, you know, feature length documentary like that gets released on Netflix or is publicly available that way so that we can start to change this narrative. And I think, you know, Hollywood needs to understand the damage that's being done, not just that it's inaccurate, but the damage that's being done to real people. Real people who were abused as children or the people who are being damaged by these films that are exploiting their condition.
Speaker 1:And it perpetuates an environment of victim blaming in that way because you're taking the blame from, hey. This purse you're you're saying that the victim is a violent one, you're not at all talking about the abusers, and they just continued. They're allowed to perpetuate, you know, abuse. And, again, it's just another way to, you know, prevent people who have who have been abused from speaking up, which, you know, knowing the history of Hollywood and abuse of power and there, it's not surprising, but it's still very unsettling. Yeah.
Speaker 3:So our, our lived experience questionnaire that we mentioned, we'll send you that information also, Emma, to put in the show notes because that's still something where we're collecting stories. And we're collecting the stories for this documentary that we've been talking about, but also we're collecting stories to help inform the longer version of Petals of a Rose. So when we, you know, we started showing petals of rose, people said a few things. They said, I feel so validated. I feel I've never seen been seen before like this and they've also said, we want more.
Speaker 3:So, Dylan, you wanna talk about that?
Speaker 1:Yes. So we've been, developing a longer version of Petals of a Rose. The documentary has taken over our priority because, you know, more voices that way and all of which contribute to Petals of a Rose, but it's it's Palos Veros is based on Holly and Holly's system in in her life, but she's only one person. And there's a hundred and twenty million people with DID out there, which which, you know, that's that's one point five percent of the population. Anyone who says DID is rare, it's like.
Speaker 3:And even more with other dissociative disorders. More than
Speaker 1:that because, yeah, that's just DID other than three million. That doesn't even include the OSDD population. So what was I I just got sidetracked by math. What was I?
Speaker 3:Talking about I'm the only one system, and there's
Speaker 1:so many people out there. System, and there's all these different stories. So I'm trying to figure this summer, wanna really focus on, okay. What is the best sort of product, I guess, for the DID community in this case? You know, because we I could do sure.
Speaker 1:Like, I already know what Rose's story kind of is. Like, I already have that template. I have that outline. I know if I were to make it a trilogy of, you know, discovering, you know, before before diagnosis, then working with diagnosis, and then afterwards for for functional multiplicity. But there's all these voices, and I want I want people with DID to have their stories be told.
Speaker 1:And Rose is just one person, and we can't just do that through her. So this summer, I'm gonna be really focusing on on putting my producer hat on instead of just my writer hat for working on Puddles of a Rose and looking at, okay, what is the best sort of thing? What is the best possible thing for this? Because, mean, right now, TV TV is big right now. And, honestly, I don't think making Curls of a Rose into a feature film necessarily is the best way to go because, I mean, because, you know, there is it is activating watching the stuff.
Speaker 1:It's it's difficult to watch, and I want people to actually have access perhaps in their own home to a redacted cut of whatever the longer version is. So people with DID can watch, you know, whatever version of Petals of a Rose is the most comfortable to them. And being in a a dark room with loud noises and, you know, these flashing images from just being in a movie theater, that could be overwhelming with the topic. So Mhmm. Again, with TV being in the comfort of your own home, you can watch the show at your own pace.
Speaker 1:So Yeah. Also, it allows TV allows us multiple sleep multiple seasons and more character development.
Speaker 3:Right. So different character. Because we we've you know, when we started working on this longer version, we actually started it back in August. Dylan and I took a a a road trip across country. Dylan was moving back.
Speaker 1:I was moving home because of the strikes in Hollywood. Yeah. So we It's like, why am I out here in Hollywood if there's no work?
Speaker 3:Yeah. Yeah. So we drove for, like, two and a half weeks across country, and we worked the whole time. I would sit on my computer and type, type, type, and we'd brainstorm. And at that point, we hadn't even talked about the documentary.
Speaker 3:We were just working on the longer version of Petals of a Rose. And, you know, we pretty we we also when we got back from that trip, we started interviewing. We did a bunch of interviews of people who have DID from around the world. It was actually really interesting because we talked to people from Australia and France and United States and Canada and just, you know, trying to get people's stories in a very diverse way. And, you know, the more we talk to people, we're like, okay, we, like you Dylan said, we need to tell more than just Rose's story.
Speaker 3:So first, we're thinking, well, okay, Rose will go to the Healing Together conference, for example, and she'll make friends there so that we can kind of talk about, you know, those people and what are their experiences. So, we're, you know, we're still playing with different ways.
Speaker 1:And that's just a plot device in order to introduce other characters.
Speaker 3:Right. But then if we do TV, episodic, you know, storytelling, we can then follow different characters besides just Rose. So there's really, like, it's limitless what we can do. A lot of it is gonna depend on, like, how this moves forward and where we get funding and all of those things. But right now, we're still just in the idea generation development phase of that.
Speaker 3:We've gotten further in the documentary.
Speaker 1:Yeah. We got I think the documentary we need is for for people to for producers in the industry to to see why this is so important. Exactly. It's it's it's for public, you know, awareness and education and also, you know, it works as a funding sort of
Speaker 3:Yeah. Video. This is why the longer version of This
Speaker 1:is why we need accurate representation Right. Of DID and not just a Rose's story.
Speaker 3:Well, and it's just, you know, it's not just about what we're trying to do with these two projects. It's about the future of representation of this community. Yeah. And it has to change. You know, it is not acceptable for the same tropes to just keep going on and on and on and exploiting these people, the way that they have been.
Speaker 3:So that's why the documentary needs to shine that light and to show this is all the harm that's being done and the time is now to change. But also, you know, there's some really interesting powerful stories to tell about people with DID. Like when we look at people like you, Emma, look at your story, look at what you have done for the world, right? And that's a great story. Let's tell real stories and you know base them on the real lives of people who have DID because they do great things in the world.
Speaker 3:Know, person that wrote in to us and volunteered to do the Swedish translations last week, you know, he's a physician. You know, there's another woman that we recently, you know, were learning about who's an anesthesiologist. And I think one thing that's really challenging with DID, people who have the condition and they see these films, is that they don't have positive role models. You know, they don't have the people that they can look to and say, Oh, look, this is a person who's living their life in a functional, successful way, you know, doing, you know, just real life things. They're not just all about their DID, they're a real person surviving and thriving in this world.
Speaker 3:And because that's not shown, people don't have that hope. And so that's the other reason these stories need to be told in an empowering way. They need to be respectful, accurate, and empowering. That's what people with DID deserve to see that type of representation. We've been talking a lot, and I'm a lot.
Speaker 3:Do you have questions about any of that?
Speaker 2:That's so powerful. And wanting to share stories in a way that destigmatizes and a way that is not exploitive and in a way that is more authentic and accurate is so, so important. And I am glad that you too are out there holding space for people and creating a safer space for people in a more accurate portrayal as well.
Speaker 3:Yeah, thank you. People deserve that, right? I mean, I think there's different marginalized groups who have pushed for accurate representation, in film and television, and people who have dissociative identities deserve that same type of representation. But it is a battle, right, that people are constantly misportrayed. It happens with people who have autism.
Speaker 3:It happens to the trans community. There was an amazing documentary disclosure that talks about the misrepresentation of the trans population. It's the struggle that you get pigeonholed into appearing a certain way, and then it happens over and over again. It's the same thing for so many different marginalized communities or people who are discriminated against. I don't really love marginalized populations, but that's how we are treated.
Speaker 1:I thought you mean the term? Okay. Yeah. Yeah.
Speaker 3:The term because, you know, it's just like that's not who we are. That's how we're treated. Yeah. I mean, it's interesting.
Speaker 1:I mean, just made me think of the idea of, oh, there's no original ideas in in Hollywood. There's I'm like, well, or they're just not being allowed out there because something might have worked once for one audience and it made money, and so we're just gonna rinse, wash, repeat. But, again, there's a 20,000,000 people out there. Why would you try to just do the same boring murder plot twist DID thing over and over?
Speaker 3:You're lazy. And it's it's really amazing that the funding actually you know, they continue to put the money into it. There was recently they they do it. It's not surprising in soap operas all the time. Oh, yeah.
Speaker 3:Well, it's all going on, but there's a re that that's probably the most recent depiction happening right now is on is it Young and the Restless?
Speaker 1:Yeah. There's a soap the Young and
Speaker 3:the Restless.
Speaker 1:We still need to reach out to those producers.
Speaker 3:So they have a character right now that they are showing who has DID, and we, of course, we have not watched it because we cannot No.
Speaker 1:I I watched some of it. Yeah. I I watched some of it. I mean, it's soap operas, you know, it's a lot. They just hear the new episode each day and it's like all their stories.
Speaker 1:And they
Speaker 3:love the drama, of course. Right? So, like, there are we can't ex we you would expect that they're gonna dramatize DID and of course, they did. They chained her to the bed and she's, course, gonna hurt her her husband. Yes.
Speaker 3:She's, like, gonna hurt her whoever it is. The same stuff. So, interestingly, there was just an article, in USA Today, I wanna say two weeks ago, Max.
Speaker 1:No, I
Speaker 3:want Well, and I don't know when this is going to air, but sometime in April, 2024, there was an article in USA Today, and we're really grateful for the reporter who, reached out to quite a few clinicians who have lived experience of DID. I know they talked to Katie Keetch and talked to Jamie Pollock, is the founder of An Infinite Mind, to get information about, you know, what's the reality of the condition versus these horrible portrayals because, you know, they had seen the depiction that was happening in, The Young and the Restless because that's the latest one. So we we actually got, as a community, a really good piece out there in The USA and they, the reporter included a a not just a link, but they embedded Petals of a Rose in the article where people could just click and watch it right there in The USA TODAY article. So that was awesome. Pretty amazing.
Speaker 3:Yeah. It was. We were excited about that. Thanks to oh, Kelly Coniglia was also quoted. So Kelly Coniglia and Melissa yeah.
Speaker 3:Coniglia. Sorry, Kelly. Recommended, you know, Petals of a Rose, they ended up putting it in the article. So that's really encouraging that, you know, there are people out in media and different forums who are trying to get the truth out about the condition. There was actually a really good article sometime in 2023 also in the LA Times, where a reporter, took good care and they interviewed Jamie Pollock.
Speaker 3:It's kind of the same group of people who gets called, but those are the people that are living and and really are are the voices that are coming forward and saying, look. This is the truth. And I think the more people do that and speak out and speak up, know, about the condition and how we're being misportrayed, We need as many voices as possible to do that. Unfortunately, so many people not they don't have the privilege to do that because of the stigma that exists and the discrimination that they might endure if they are to speak up. That's what we're trying to change.
Speaker 3:That's what we're trying
Speaker 2:to help with. I know it's so difficult. You all even experienced some of that when you presented at ISSTD from a clinician. What about that story do you want to share?
Speaker 3:Yeah, I'll share that story. That was interesting, right? So Dylan and I, we had the privilege of attending the ISSTD conference. You know, we were invited to screen our film, but we're not clinicians, we're not technically people who are supposed to be at the ISSTD conference, but they allowed us, in addition to screening our film and accepting our award, to go to the conference for three days, which was wonderful because we learned a lot, it helped inform our, it's helping inform our work. But, you know, while we were there, we had the opportunity to meet a lot of different people, we went to different sessions.
Speaker 3:And one of the sessions we went to was actually another filmmaker who was showing a film that he had made about it's actually a case study of one of his patients. He's a psychiatrist and he screened his film and it was actually a draft version of the film. It's not finalized. And the way that he set it up is he said that he wanted the feedback from the audience about this current draft of the film. And so, at the end of the film, we we had a lot of thoughts about it.
Speaker 3:We had a lot of concerns about the film, and what we really didn't like about the film is that there was so much focus on the pathology, the pathologizing of DID, and we wanted to hear more about how DID is a survival mechanism and how the parts there was a lot of focus on integration and final fusion, which apparently this patient had achieved, and that's great if that's what that patient's goal was and they got to a place where they were living in a way that worked well for them. But we wanted there to be more focused you know, gratitude for the parts, appreciation for the parts, honoring of the parts, and so we stood to share our feedback because our feedback was requested. And when we stood to share, we disclosed that we were a person living with dissociative identities, and our feedback was not received well by this person. We had a little bit of back and forth, and it ended with this presenter saying, I am the psychiatrist here, which was his way of saying, Little girl with your DID, just sit down and shut up. And, it was very invalidating and frustrating.
Speaker 3:And unfortunately, so many people have been met with this type of treatment when they have shared that they're someone with lived experience. But I think also there's an issue within the mental health field of the hierarchy that sometimes becomes more focused on of I'm the psychiatrist or maybe you're just a therapist. In my case, I'm not even a therapist.
Speaker 1:I'm just a person living with this shit. We're living with DID.
Speaker 3:I do a thing about it. So and has done a lot of research and, like, you know, gotten a lot of feedback from a lot of people in the community who are living with it about their perspectives as well. So, you know, that was invalidating, but what was really validating about the experience is how much support I received from people who saw what happened or who learned about what happened later. So, after that presentation, numerous people, you know, like flocked to me immediately afterwards to say, I cannot believe how you were treated. And and I appreciated when I shared with you, Emma, your support.
Speaker 3:That meant so much to me, and you were concerned. Others on the ISSTD board who I shared my experience with were very concerned and very supportive of me and what had happened. And they encouraged me to file a complaint, which I did. So, you know, it's the concern was whether this individual had violated the code of conduct, and it was determined that technically he had not, but the board has told me that the incident has caused them to really rethink a number of, you know, issues around the conference and ensuring that people are treated appropriately. I don't know if that means the code of conduct needs attention or, you know, how they tend to address it, but I I guess I'm just happy that my situation was acknowledged and supported and evaluated in a way to say, you know, how do we make sure that things like this don't happen to to people at ISSTD events?
Speaker 1:Because yeah. Because didn't somebody else also provide some similar feedback that you gave, and they were not received with the because yeah. Yeah. Because I don't even get Holly even though I just wanna clarify, even though she said there's some back and forth, it wasn't like Holly is very respectful as was everybody when presenting their feedback. Yeah.
Speaker 1:But Holly was the only one to say she was a person living with DID. Yeah. And some of the same feedback that Holly that Holly shared, somebody else hadn't, they were not met with this Yeah. The Dismissal. Dismissal Mhmm.
Speaker 1:Nature. Yeah. I mean, I almost I mean, I had to just felt I had to leave the room. I'm like, I'm getting very frustrated. So Yeah.
Speaker 1:Yeah. But, I mean, I, you know, I came back. I was I was just in the back. But, yeah, it's it's just difficult as even as thinking about it. I
Speaker 2:think that that's such a good example of when a person makes a mistake and is not necessarily representing an organization. I think of my experiences with ISSTD, my experiences have been what you experience after that, of people showing up and responding and tending and the support of this is not okay, this is not who we are and that's why it needs to be addressed because we want it to be a safe place And so I love that example, not because I loved what happened, that's not okay what but to see, and I was there in the big banquet room watching even some really big names of people who were coming support you show support and reassure things like that. That's who I think of as ISSTD, are those people. Of people and individuals showing up, and you following through and advocating for yourself both in the moment and afterward of this is who we want to be, this is who we need to be. As a community, different organizations, different non profits, different survivors, It's an example of what you're saying with Petals of a Rose and the work you two are doing with the documentary and everything else of just because hard things have happened to us in the past does not mean we can't function, not mean we can't advocate for ourselves, does not mean that we can't accomplish things.
Speaker 2:And you advocating for yourself in that moment, not that you should have had to, the way you stood up for what was right and following that through, the way other people were standing up for you, the collaboration in that, the support in that, it's such a beautiful thing of who we are as a community.
Speaker 3:Yeah, I agree. I mean, I really do feel it was beautiful how I said to Dylan, I was like, I'm kind of glad it happened because seeing how it was tended to and the support that I received was really quite amazing to me, and really was blown away by that level of support and care and concern and that people, you know, were very interested in, okay, we're not gonna just dismiss this, we're gonna fully investigate it and evaluate it and think about the implications broadly. And, you know, the ISSTD cannot control every member of the ISSTD, and this person who was invalidating to us was one person who, you know, did one thing. Unfortunately, think that some of the attitude of that individual is more pervasive than we would like it to be in the mental health field, But the ISSTD cannot control all people. I can set policies, can and they can also take action, you know, and set tone.
Speaker 3:They can serve as leaders to try to show what is right, what is the right way to treat people. So, you know, I think that what happened will help them to even do that further by having a real life case study example of how someone with lived experience was was treated. I I also just think it was interesting. So one
Speaker 1:thing you were telling me at the ISST was I mean, this was this just has to go with even with the conflict and everything, the amount of empathy that Holly still has in both other people with DID, again, not violent, not murderers, is that this person is is an older person and has been around trying to defend Right. The existence of DID. And so perhaps, you know, from people who don't believe in DID. And so perhaps this person was actually activated and getting feedback on this film in which he has, you know, been trying to speak about this the this is DID. This is what it is, you know, to people who don't believe in believe in him, then it could be, hey.
Speaker 1:Maybe he was activated, and, you know, in this sort of, oh, I'm have to defend myself and my work again sort of mode modality. And I just thought that was very interesting how, like I mean, I guess, it's, you know, switching. How how Holly or her sister, even after receiving this after this whole experience, is still able to find that empathy and figure out where he might be coming from instead of just, ugh, gurr, dude dismissive me of me. It's like, oh, maybe he was activated or something.
Speaker 3:Yeah. I mean, I I I guess I always look at things that way. Why what was the reason for his behavior? It doesn't make the behavior okay. No.
Speaker 3:But I can, you know, try to understand why maybe someone behaved the way they did but he still is responsible for his behavior. Well I think that the icing on
Speaker 2:the cake was that you got your award right after and you got a standing It was beautiful.
Speaker 3:Yes it was. The timing of that was interesting.
Speaker 1:That's you. Yeah, was supposed to happen and then immediately and the award goes to Powerhouse of Apollo's. And then the entire room just like burst, you know, pause, was whooping and Yeah. Oh, and it's like That
Speaker 3:was that was beautiful. It's really it was amazing to get that award. I mean, you know, when Dylan made this film, he made this as a as a project or a class assignment. Right? He had to make this film to graduate.
Speaker 3:And so he didn't originally make the film with the objective to, have it, you know, used around the world to educate people about DID. No.
Speaker 1:I mean, I hope that maybe some people could benefit from it, but I'm like, maybe Holly will take care of it. As far as how you can get it out there, I'm like, that's I'm like, maybe I'll I'll be a proof of concept to make a longer version because it is an important topic that needs to have accurate representation. But, no, I did not expect it to go around the world and get 10,000 views just over that first week in that healing together.
Speaker 3:Yeah. It's been pretty it's really blown us away, and it continues to. Like, it really does continue to amaze us, the reaction to the film, and just these people write into the website with the most beautiful messages. I mean, some people have written in and said to us, you know, I didn't actually realize I was a system until I watched the film, and it helped me really understand what was going on with me. And so that's that's amazing, you know, that it's actually helped people understand their what's really happening.
Speaker 3:So, you know, people who already know find it validating, but it's also helped people to to get a better understanding.
Speaker 1:And people share it with their families. Mhmm. And then and then to to help them understand and then it's like, that's really helpful. Instead of trying to put it into words, let them just watch this thing.
Speaker 3:So it was it was you know, it felt good to be acknowledged for the work that's been done by the ISSTD, but most importantly, it was helpful for the film to get additional understanding that it exists by a broader, you know, set of clinicians so that they can continue to share it, because that's what we really want to have happen is for it to continue to be shared and used. You know, ultimately one day maybe we'll work on our one of our another strategies we have is how do we get this film into college classrooms? You know, how do we create some sort of training that we use this film and maybe parts of the new documentary to really help people understand the condition because I think there's so much opportunity. We actually, one of the contacts we made at the conferences was Maggie Price, one of the plenary speakers, she does research on stigma. And, you know, she's created some interesting training.
Speaker 3:I think it was, gender based training and, but looking at, you know, the similar work that could be done in terms of creating educational tools where we take the film, we break it down into pieces, we talk about how different concepts are being illustrated, know, teaming with different clinicians. So there's so many opportunities and ways the film could be used. And so it's it's I think we have no idea really what the future of this film holds.
Speaker 1:Oh, that's why I'm that's why this summer, I'm gonna be sitting down with my producer hat on saying, okay. What what can I possibly do with this? Because, again, it's like, would it be better to design it for education to try to get it into schools that way? Would it be best to have it as a a mobile app where you can watch an episode and then, you know, have like a you you can just watch it on your own or you can watch it with education mode activated where so it's like, okay. Poke this button to learn what's really going on about the scene or something.
Speaker 1:So there's there's always different things we can do.
Speaker 3:We'd love to hear anyone who's listening. If you have ideas and thoughts, you can certainly write into the website. We'd love to hear ideas because we've continued to collaborate with a variety of people. I had brought up Maggie because we talked to her about, you know, I asked her if she'd done any research on the stigma related to DID because she does she does a lot of research around stigma and different, primarily around identity, but she had some interest in research around the stigma against dissociative identities, exactly. So, we're definitely going to follow-up with her, but you know, there's there is so much opportunity to drive change and that's why I think that was the greatest thing for us about the conference was the connections that we made there.
Speaker 2:I'm so glad that you got to come and present the film and I'm so glad we got to meet you in person.
Speaker 3:I know, finally, right? After five years, I don't even know how many years it's been since. Yeah, it's
Speaker 1:been like, I think, yeah, it's yeah, think you started listening, what, 2018 or 2019?
Speaker 3:Yeah, don't remember exactly. And when when did you start the community, Emma? In the pandemic in 2020. Okay. So, yeah, that's we were in the the community from the very beginning, and we were listening to the podcast before that.
Speaker 3:So, yeah, it's been it's been a while. Right? So it was nice to finally get to meet you and give you a hug. That was exciting to see you and to see Jules, so that was awesome.
Speaker 2:I am so glad. Is there anything that we didn't get to share or talk about that you wanted to cover today? Again, we'd love for anyone to fill out
Speaker 3:our lived experience questionnaire if you haven't already. We're very grateful to the people who have. We'll put that in the show notes. We'd love for you to follow us on social media. We put updates on what we're doing on Instagram and Facebook.
Speaker 3:We have pages on both of those. We have a YouTube page, but we don't put a lot on that, our YouTube account. So definitely follow us if you wanna know what's coming up next. Summer is probably going to be a little quiet. We don't have we've made a decision not to to do much over this summer, and we are going to be presenting our next conference.
Speaker 3:We are actually teaming up with Jamie Marich, and we're presenting at the EMDR HAP conference in August, in Philadelphia. So we're excited about that. That's our next conference presentation with Jamie Marich. And, yeah, that's what's coming up. Think of anything when you stood up, Dylan?
Speaker 3:I mean, I mean, I don't
Speaker 1:know if it'd be better just to put it in, like, a another Google Forms format to fill out, but I I don't know. Like, as far as this documentary goes, if you want to do something just to just to see, you know, I just I just don't know what's the best option. And this whole project came around because I wanted to make a video essay, like a YouTube video essay. And then then Superwoman's like, no. We this is too good for just a straight to YouTube video essay.
Speaker 1:Let's go to Netflix. So I don't know. I'm hey. What are your thoughts on I don't know. If it was a straight to YouTube thing, that's not gonna happen.
Speaker 1:It was most likely gonna be Netflix thing. I don't know what to ask. I'm just throwing questions out there. How what what would you like to see in the documentary about DID representation? Because there's a lot more than just the the stigma.
Speaker 1:I I want to figure out how to include stories. And, I guess, if you knew there was a documentary being made about DID trying to correct the portrayal, the the misportrayal in in Hollywood cinema. What would you like to see in that documentary? What would you like to see covered? And you
Speaker 3:don't think our questions in a lived experience
Speaker 1:They already are probably in there, but I haven't you know? I don't know if
Speaker 3:it asked that. I don't think it asked what do you wanna see. I I was just kinda trying to remember the questions, but it's more the questions in the lived experience questionnaire are about how have you been impacted.
Speaker 1:Yes. How you've been impacted.
Speaker 3:There is I think there's a question of is there anything else you'd like to share? So you could put that in there if you're filling that out, or you could just write to the website and answer that question of anything you'd like to see in the documentary. Yeah. I mean about representation. We'd love to hear any feedback.
Speaker 3:We we love we've learned so much from the people who write into us, and we've made so many great connections that way, so we're appreciative of of of any feedback that people wanna provide on any of the topics we've been talking about. Yeah. Thank you for having us back on the podcast. It's it's exciting to be back on here. We appreciate all the good work that you continue to do to help this community.
Speaker 3:It's really amazing the impact that you have had far and wide with your podcast and with the online community. So thank you so much. Yes. Thank you so
Speaker 1:much again for having us and supporting us and doing all that you do, Emma.
Speaker 2:Thank you. Okay.
Speaker 1:Thank you.
Speaker 2:Bye bye. Thank you for listening. Your support of the podcast, the workbooks, and the community means so much to us as we try to create something together that's never been done before, not like this. Connection brings healing, and you can join us on the community at www.systemsspeak.com. We'll see you there.