Transcript: Episode 117
117. Guest: Power to the Plurals
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[Short piano piece is played, lasting about 20 seconds]
*Interview begins*
[Note: Interviewer in bold. Interviewee in standard font]
Hi Emma. How are you?
I'm good. I'm excited to talk to you today.
Yes, I'm also really excited.
I want to say too that you are one of the few people I've gotten to meet in real life because you came here for the conference, the Healing Together conference. Yes. And I barely met you because we were too scared. Yeah, it worked out in the end. It did. You're so gracious. I also want to apologize for the whole Greenland thing. [Laughter]. You want to apologize on behalf of your country? Yes, I'm sorry Netherlands. Well, you know, we apologize for colonizing your country in the first place. [Laughter] So full circle. There we go. Just to get that out of the way. I'm really sorry about the whole Greenland things.
Oh, my goodness. Okay. As I know there's a lot to talk about today, as we get started go ahead and introduce yourself a little bit. And we'll go from there.
Yes. My name is Sarah Anne Clark from powertotheplurals.com, and we are a poly-fragmented DID, plural advocate and activist. We live and work in the Netherlands. We are 32 years old, mother of an amazing child and three cats. We have an online peer-to-peer support group called AlterNation Plural Safe Space. And we do many, many more things on the site.
Well, and one, one of the things that I appreciate about you guys, is that you're not just there to share your story or to educate, but you're specifically working to advocate for change to improve life and treatment for survivors.
Right? Yes, exactly. And for the next generation. Because for many people of my age and older, it's been such a struggle. And I want for the next generation to be, for for them to have an easier path with finding help and resources.
That is wonderful thing. And we've learned so much from you. And we're so grateful for the work that you're doing.
Thank you. We also learned a whole lot of from you all, and from this podcast.
Well, thanks. You blew me away with this article. Do you want to jump right into the article? Or do you want to give some background first?
Maybe. So people know who I am. So we run a support group on Facebook called AlterNation, and it's a peer-to-peer support group where we encourage each other and show each other that living with plurality or living with DID is very well possible to live a good life together. And I think we don't have many role models in the world. So we try to create a place where people can learn from each other.
And again, it's more than just a support group because it's about actively living well no matter where you are on the journey.
Right. Yes, exactly. And to support people where they are on their journey, right?
Yes! And I think that's an important thing because there are times where there is sort of a culture and a community to it that is part of the experience of having DID. And in some ways, I would think I don't necessarily need that because I'm in a place of not wanting to identify with my trauma. But understanding even in that context that that's really a very privileged statement because I am in a place where I have a good therapist and where I finally found one. Right. But that doesn’t undo the years and years and years we had of not having a good therapist, and there are people all over the world who don't have good therapist or not don't have good access to treatment.
Yes. We always say that good treatment for DID if you can find it, it's a privilege for sure. Absolutely. Especially if you look worldwide.
Right. So I feel very often just corrected and aware of that statement because I have been in that place and it was awful and very difficult. And I needed that kind of community in a way differently than I need it now. And it's not that I don't need it now. It's just that I have to keep sort of in a social justice sort of way, and understanding that having access to a good therapist is a part of privilege. Yeah. I think that that is something important for clinicians to remember when they are wrestling. Because if you're just a clinician and only in your little comfortable office, then some of what we're about to share would be like, “Where did that come from? It comes from left field. Where did this come from?” But it actually makes sense, not just when you talk through the theory that you're going to share with us and sort of your response to it, but also the context of why it's so important to even talk about something like functional multiplicity.
Yeah, exactly. And also to explain more about our culture and communities and what it entails. I think it's not very clear to the clinical community what we're actually doing together.
The other piece, besides is access to services, the other piece is that even if someone is choosing treatment, which it should be a choice. Which means it also should be available if someone chooses it. And even if someone is choosing a certain definition of what healing looks like, it's still a really long journey. Yeah, for sure. Years, and years and years and decades. And so we're talking about not just survivors having choices in healing, and survivors having choices and being able to describe what healing looks like, but we're talking about the decades of treatment or not having treatment or access to treatment, and how do we exist in the meantime? And yes, exactly. That's part of why we need community.
Yeah, and that's exactly why I started this. Because we got diagnosed in 2010, 11, and 12. And then in 2012 we finally believed it. And then we wanted to go to like a specialty center here in the Netherlands and they told us that the waiting list was four years. And we realized we would not survive that if we would just sit and wait. We had to do something ourselves. We had to take action.
I was just talking to Kathy Steele last week, actually. And she she mentioned the Netherlands as being so progressive in treatment. And I stopped her. I said, “But wait, because just because the workbook came from there, and great good job on the workbook. We love the workbook. But it doesn't mean everyone who's there has access to treatment.”
Exactly. Yes. And I was at a conference here in the Netherlands where Kathy Steele spoke. And there were 500 people there, maybe even a little bit more. But all of them worked in private practice, while we have health care here for the whole country, right? National Health Care, I think it's called? So the private therapists is something that not many people use or can afford. So yeah, it's an issue.
So even the people that were there, because they're in private practice, the general way that you pay for services, or the National Health Care that you have, insurance sometimes it's called, different countries have different ways. It doesn't cover that.
Right. Yeah. And even if it does cover it, then those therapists are not working together with crisis services. So often you have to be extremely stable before they will take you as a patient, which is not very realistic with DID.
So you have to be healthy and functioning and stable before you can get help.
Exactly, yes. They tried to send me to a war center in my last intake. It's like so far out of there. Even, yeah, I can't even like imagine what those people have been through will go there. But I don't belong there. It's not my space. But yeah, that's, that was their last solution.
So for all of these reasons, we've sorted of even, even putting together the Plural Positivity Conference with you and the Crisses. And when we talk to the Healing Together conference in that group of people, part of the need for that is because no matter where you live, and what access you do or don't have, there is a huge timeline. We're we're continuing to exist and live while having DID with or without support. And even once treatment starts, it's a long time of treatment.
Yes. And we know from research that it still takes six to eight to 12 years to get a correct diagnosis for DID. But we exist as DID, as plurals, in those six to 12 years as well. While we might be uncertain ourselves as well of what is going on, but it doesn't mean we didn't exist, or weren’t there, or we weren’t plural, or we didn't have DID just because we didn't have the label yet.
So if we count even the difficult years of childhood and adolescence, we're talking about decades and decades and decades of living even before getting diagnosed. Right. Plus treatment as well.
Yeah, exactly. And one of the interesting thing that Katie Steele mentioned at the conference here was that people who hear voices and DID, hear those voices before the age of 10. So it's really a long time. That's incredible.Yeah.
So, so this is why we built community, this is why we're talking about ways to empower people who are plural or have been through all of this, and now you're out to change the world. Right. For people in the meantime.
Yes. That's my hope, at least, that something good comes from all of this.
That's a powerful thing. And I know that the Crisses have borrowed a lot from the disability community, and the LGBTQ community, and working with different people who already have skills for advocating. Right. So that's been some of the approach. Yeah, and the autism community is also a big inspiration. Yes, yes.
So using all of these people and resources and skills for effective ways to educate and empower that community itself, as well as advocating with the clinical community for changes that are needed, or to be aware of what implications when they make choices or decisions, or say this is a theory, or this is the treatment, sort of the experiential implications of that as survivors that we endure while they're making those decisions. Where do you even want to start with all this?
I want to start by explaining a little bit about culture. Yes. If that's okay. So I want to give a sort of a disclaimer upfront because the DSM-5 excludes the disorder DID in criteria D if it's associated with broad normal, cultural or religious practices. But 1 to 3% of the world population is plural; I call that pretty broad. And we know from our communities that there are some people who experience plurality as an experience that can be cultural or religious, although we’d rather say mystic or spiritual as we do not see plurality a lot in organized religion. And then there are some people who experience DID sort of as explained to the DSM-5. But because those people are, get a DID diagnosis, or are looking into themselves if they might have DID, they become part of a culture of a community. And it's kind of scary to speak on this because of what the DSM-5 says. It can become a kind of chicken-egg kind of question. And I think that means that it's very important that we address this. Because plurality is a community, has a community, and has its own culture. And it's a beautiful one.
So so I want to give some examples. I think that can make it a bit more concrete. Yes. So in our Western culture, it's customary to shake someone's hand and ask “How are you?” Within the plural culture it's customary to ask, “Who are you?” Maybe not literal, and not for everyone. But it might very well be accustomed between friends.
When we see each other at a conference, or when we're writing a meetup or something. Yeah. We’re not saying, “How are you?” because we already know the struggle. We're in the struggle. We're saying. “Who's here today? Who's out?”
Yes. Yeah. And then other things that we discuss between plurals is things like headcounts, inner worlds, system roles, subsystems, whether someone is comfortable with talking about who is actually fronting, genders and pronouns, in addition to the usual topic singulars discuss like work, kids and school, of course.
That's amazing. There's such a bigger context of what is happening in the experience of a plural. Yeah. And the culture of it is really unique and different than someone who's not a plural.
Yeah, for sure. And I think it's also very important that we build this community, and that we see the similarities between people, between people who are plural or have DID, and that we that we can find a sort of homecoming in that. You find a community. You find recognition. And I truly believe that our groups save lives because we don't have a lot of good role models. The possibility of in therapy of suggestion, or a skeptical therapist, or outright abusive therapists. There's a lot of outdated information, misinformation, and a bias of the singular normative world. Finding out you have DID or are plural is not a pleasant experience, and it can be a traumatic one in itself. And so then if you find a community where you find a homecoming and a recognition, and peer-to-peer support, that can be so important. Especially with the wait times we have for therapy, if it's a possibility for someone to find therapy in the first place for their DID.
Yes. And even once they do, the therapist is still human and not available at all times.
Exactly, yes. We speak about this a lot. That we are our best support network. Or we can become our best support network when when once we learn coping skills. And we, our system, that people inside of me are always available. They are always there. I can always rely on them. And that's a huge comfort once you can see yourselves like that instead of it being a burden or something that obstructs your life.
Which is also really empowering both in not becoming too dependent on your therapist in unhealthy ways. Right. And as well as sort of empowering yourself with your own freedom that you've already survived this and already have a system in place to continue to endure. Exactly. And using yourself as a resource. Yes, yes, exactly. And then there's also sort of that piece too, of being able to serve others in the community in the same ways that you've been helped. Take turns reaching out to each other. There's sort of a mutual friendship that comes out of that. Yes. Yeah, it's beautiful when that happens, when you can truly connect with people and and talk about the shared experiences.
Okay, so tell me about your article because-. Well, even before we get to your article, let's talk just very briefly sort of review what the Theory of Structural Dissociation is. Or what people think it is.
Right. Yes. Although it varies a lot per person. A lot of people think it's a theory that consists out of EP and ANP, apparently normal parts and emotional parts. And that it means we were not split off, but instead we never had the chance to integrate into one full cohesive personality due to early childhood trauma. That's what most people think that theory is. But actually, it's a theory that talks about PTSD, borderline personality disorder, dissociative disorders, all sorts of trauma disorders, where they explained that there might be a emotional part and apparently normal part, or multiple emotional parts. And in the case of DID, there are multiple emotional parts and multiple apparently normal parts.
So they are saying that there's dissociation in other things besides DID. Right. Yes, including the parts. So people could be plural even without having DID. Yeah, basically.
So tell me about your article that sort of called out the layers of this, because it was huge.
Yes, it was very long indeed. It's called Why the Theory of Structural Dissociation is Ableist. So maybe I should first read the definition of ableism. That might help for some people. So ableism is discrimination and social prejudice against people with disabilities or who are perceived to have disabilities. An example that I wrote down is: If you choose not to integrate, you choose to make your DID chronic, or you're narcissistically invested in your alters. Oh, wow. I'm just gonna let that hang there for a minute. [Laughter] So that is how we explain ableism in this context.
And so the first part of my article is is explaining a few things. For example, that it was actually Charles Samuel Myers, psychiatrist and psychologist, who in 1916 wrote for the first time about apparently normal parts and emotional parts after acute trauma and World War One. And Putnam explained that we are not split off, but born with different states and early childhood trauma survivors can't integrate due to that trauma. So I wanted to get that a bit straight, straightened out, because in the DID community online we see that being people say that is Theory of Structural Dissociation, but it's actually borrowed theories from other people.
Yes! So you in your article, you sort of talked about two pieces of that, the ANPs and EPs came from someone else entirely, not from this theory. Right. That they borrowed that, not introduced those terms. Right. And then what was the other piece about Putnam?
We read in The Haunted Self that “structural dissociation involves hindrance or breakdown of a natural progression towards integration of psychobiological systems of the personality that have been described as discrete behavioral states.” That is a quote by Putnam from 1997. And that is what most people refer to when they are explaining that we are not broken, we are not split off, we are all born with the different states and in early childhood trauma we can, due to early childhood trauma we can’t integrate in early childhood. So that was actually Putnam who said that. And you can read it in the Haunted Self, the book about structural dissociation. But it was actually Putnam who said that.
So what you're saying, a part of what you're saying, as far as from the survivor perspective, or even for clinicians, that you don't have to agree with all of structural dissociation theory to use one or either of those ideas, because those ideas actually were already out there.
Right. Yes. Yeah, yeah, kinda. I'm saying you shouldn't cherry pick the theory at the one hand. But what I am saying is that you can use the EP and ANP theory, and the we are not split off theory from Putnam, instead of saying this is Theory of Structural Dissociation.
Because it was already there before this.
Yes, a long time ago in 1916. That’s 100 years ago that ANP and EP were like invented. To call it that.
So the clinical community says that the ANP and ENP, the ANP and EP concept is important because even though you can't necessarily fit every altar, or every role of every altar, into one of those categories exactly. What they're saying is that it describes the abuse dynamic where you're having to confront the abuse and deal with the abuse, while also having to maintain function in the context of being abused. And so the ANP and the EP sort of represent that underlying dynamic that defines trauma. Right. But according to what you're pointing out, that is, can describe several different things and is not just DID specific.
Yes, that's what the theory describes. But they they so they talk about these, these parts, right? The apparently normal part and the emotional part. And it is to me still unclear to this day if an emotional part and that apparently normal part is the same thing as what we perceive to be an altar. Because it might very be, very well be that people in PTSD experience these ANP and EP parts but that it’s not the same thing as when we actually experience in DID. Because they explained it the emotional part as a fragment that holds one emotion. And in my system, at least, that is absolutely not the case. We can all like, every part of me can experience various emotions.
It's a lot to untangle when you look at what they're implying and what they maybe don't realize they're implying. Right. Yes, exactly. Yeah. I tried to like realize that these people probably have good intentions. But, and so what they explained in their book a lot is about the day and the night child. Are you familiar with the concept? Yes, but saw it here for the listeners. So the day and the night child was first described by a woman, I don't know her name, sorry, who survived World War Two and the Holocaust. And she talks about the day and the night child where they don't know about each other, but they are both there in the same body. And one endures the abuse, and the other one endures day to day life. And, and I can agree very well, or I can see how that reflects DID well if you don't have that many parts. But outside of that context, we have so many more emotions than just one. And we're not just fragments. And especially we spend time in the outside world, like if we front, we can learn that we are safe in the here and now and that can develop our personalities, so much more individual personalities are a personality with a personality. [Laughter] Not just one emotion. If that makes sense.
Right. Right. And especially in the context of not having access to treatment, or waiting a long time for treatment, there's more opportunity for more of those parts to front more often and become more well-rounded because of more experiences out in the world.
Yes. For me the Theory of Structural Dissociation is mostly about integration. That's mostly what I read is that their theory can integrate people. Or that's what they hope comes out of it.
They find that theory valuable because if we were never split off to begin with, then it's easy to put us back together. Yeah, I guess so. Wow. So it becomes ableist because it is redefining one experience as something else that it's not necessarily really what's going on, and because it has expectations that someone else wants as opposed to what we choose with our own experience.
Yeah, and I don't think the therapist really knows what is going on. Especially not if they follow the Theory of Structural Dissociation in their therapy. Because the idea is that the therapist addresses all of you, and and not do not treat parts as individuals, right? That's their idea. And so they mainly try to talk through one apparently normal part. Then that is the best outcome for us as plurals, we are then the most integrative, we have the most capacity to integrate the experience fully.
And although I understand that when we say that everyone should listening during therapy, I don't think that should be the case when we express ourselves. Because a lot of us, whether we are EP or ANP, deal with shame and might not want to repeat what the other emotional parts are saying inside and or that information might be so overwhelming for us that we dissociate, or we can deal with it. So half-truths might reach to a therapist. And then a therapist always sees us only in a clinical setting, never outside of it. So is that really the full picture?
Right. And if you have a whole team of people, even just like in a boardroom. I don't mean internally in that example, but I mean, like at a business or something, like external people. If you talk to just one of them, and the CEO is going to have a different idea for, than what the financial person needs than what the person at the desk job needs than at the person who has the order the supplies needs. Like they may be need to communicate together to function in what the goal is trying to do. But if you only talk to one and everything that everyone else needs is filtered through that, it really limits the picture and the experience and even the experience of that particular ANP.
Yes, exactly. Yeah. Plus, you know, some people say that if if they would treat us as individuals, it would make us dissociate more. But I don't believe in that. Because the damage was already done a long time ago. We were already not integrated a long time ago, to call it that if we follow this theory, or we were created a long time ago to put it in other theories. And, and so I don't see any harm in talking to us as individuals and and to take our individual needs and desires into account.
So that makes sense as far as the sort of again, you can't just take and pick bits and pieces of the theory. Because if we were already split a long time ago, because really we were already born that way and just didn't integrate then, then treating us as those individuals that have been there from the beginning is not going to make us less integrated than we already haven't yet been. [Laughter] Yes, exactly. Yeah. That makes sense.
That is, like, interesting to me because this theory like talks about the phobia of parts and how to overcome that phobia. So it's like they're teaching us first to embrace like our full selves and all ourselves. And then we need to integrate it and learn again new coping techniques. Because our first coping technique, what we are learning is to work together, right? And then if that falls away due to integration, you have to relearn your coping techniques again. I don't see. Like, I think that just doubles your therapy time. And I don't really see the purpose in it. Wow. Like if someone wants it, if someone wants to fully integrate, if that system collectively what that, sure. Go ahead. You can try that. But we know from studies from a six year follow-up study, we know that 12.8% of people were able to fully integrate. I don't think that's very hopeful, to be honest. And it's basically your only given option at the moment. Here in the Netherlands, at least.
Which goes back to why talking about functional multiplicity, even at least as part of the conversation, is so important. Yeah. Because even according to their own theory, it's going to take a long time to get there. So there's a period where we need to function as a multiple. Right. If integration isn't something we're able to do, or not able to do yet, or not choose, then there's still a season of this is how we are and needing to work together. Yeah, absolutely. So why is that not emphasized more in treatment as part of the process at least?
Yeah, and I wonder why it's not being studied. Like, there are still studies to prove that DID exists. But it's been in the DSM as DID alone for 25 years. How many more times do we need to prove that it exists? We're all here. Right? [Laughter] So, to me it would be like so much more beneficial to study what the effects is of like functional multiplicity or plurality, whatever term you prefer.
What does someone with DID need to know about the concept of plurality? That's a good question. Sorry.
If you mean someone who's new, who just find out? Sure. I think it's good to know now that it's going to be okay. It can be extremely overwhelming to find out that you're not alone in your head. It can be extremely overwhelming to start to hear voices that you once thought were thoughts or imaginary friends. It can be really overwhelming and scary. And reading about DID can be very scary. And it can be like looking in a mirror and seeing for the first time what you didn't see before. But it's going to be okay. There is a community out there that is ready to receive you with open arms. There are people there where you can learn from, where you model, where you can grow with, where you can share your experiences with, and read that other people go through the same thing. And that's extremely empowering. And from that place, you can teach the others in your own collective systems to to be your own best support network. It's, I know for sure that’s possible because I've been living it for the past five years. And I continue, I hope to continue to live that way for a very long time. Because it's a very different way to live. Very different. But it's so worth it once that connection is established. You have a unique opportunity at life that not many people have. So make the best of it together. Because together we are stronger.
What would you want clinicians to understand about functional multiplicity or plurality?
Um, that's hard to answer because clinicians like facts and studies and research, and there is no research. So I only have my own lived experience. And I have the stories of other people who are doing this. And I think there are also a lot of people who were diagnosed with MPD who are living like this, but they might not share it with clinicians or even with the rest of the world. But I think what I want them to know is that we exist and that we have a voice, and that that voice will need to be heard. Because I mean, no offense, but after 25 years, we still haven't figured it out. And I think we're going to keep miscommunicating if we do not have this conversation together as the plural community and the clinical community. They're like, we have so many words that have double meanings or many meanings, and that's really becoming an issue. And for some people, even a trigger.
Absolutely. I was reading this morning, a study that talked about how there's more than 30 definitions of just dissociation. Wow, 30? That's so much. So it's no wonder that sometimes we don't understand each other when we're talking about things. And in the communication or conversations between clinicians and survivors, when we talk so much about what dissociation is, or what it's like, or how to treat it, we are still missing the entire experience of what it's like to live with it, and how to maintain functioning while dealing with it, and while coping with it, and coping with everything that it means, that comes with it as part of the experience. And so I think that's one thing that the communities online and the culture of those who are plural or have DID. Part of what's so powerful about what they're doing is not just educating each other on what is DID, or what is dissociation, or what is plurality, but also sharing: This is how I deal with it every day. This is what it's looks like every day in my life. Or different everyday for us. [Laughter]. Right. This is what my experience of this is and how I live with this as a person. Which is where the culture comes in and where the community comes in.
Yeah, I think like, with the clinical community, only from understanding can we come to an agreement. And I like to quote Brene Brown because she said, “We don't even have a shared vocabulary to disagree.” So and as long as the clinical community disregards us and we have to say by plurality, we are just going to miscommunicate. And so the treatments they're going to offer are probably going to lack information that we could have shared with them. Absolutely.
And then there's one more thing that I would really like to address in this, and that is that DID is the only disorder for which it's suggested that we should not interact with each other outside of organized group therapy led by therapist. Yes. I think that is something we should really address also towards the clinical community. Because if I write it down from a nonclinical perspective, that means they are isolating us, silencing us and giving us one source of information. And that sounds like a classic abuse tactic to me. And I think it's why survivors so often recognize it too late that they are in an abusive therapy situation. Because it's always been their normal. And I think by establishing establishing such a role or groundwork for us as plurals, you, the clinical community actually endangers us.
I think that what you've said is so powerful and so very true. And it baffles me that that, that this is still what is recommended because as you said, every other medical or mental health issue is focused on connecting with others and support. And then all of the research for healing is about how healing comes through connection. Not just relational therapy, but even now with polyvagal and everything else, we understand that healing comes through connection. So keeping us further isolated from each other, seems to contradict both of those things.
Right? And it's like really unclear to me why they have this idea of, I don't understand it.
Well, and it's a very old one. And so it's just one almost that feels like we haven't gotten to yet to sort of update or fix. Right. It's just sort of still there on the paper. Yeah, okay. [Laughter] That's something that should be updated then. Probably. Or at least looked at.
Well, and it goes back to the culture thing. And I was explaining this to Kathy Steele actually, in that interview. Was how, because the internet now. Right. It's like with technology we have access to each other in a way we never have before. Yeah. And so having groups that are supportive and focused on peer-to-peer support and education is different than a group of drama that just makes people sicker, or a group of just triggering each other. Like, we know how to keep ourselves safe. We know how to keep each other safe. And we know ways that different groups have different styles. But we still, we know how to engage in ways that are helpful and naturally protect ourselves from what is not helpful. So having the groups to support each other, and to learn from each other, and to be in this together, especially when it's such a long journey, is so so valuable.
Yes, and I think it's part of our culture. We ask permission or consent for like physical contact. But even on on the internet, we say like “hug if you want to,” or something like that. We state the goal of our interaction like “we’re just venting.” We use trigger warnings, and we try not to trigger each other because we know we can help each other better if we are not triggered ourselves. We avoid trauma dumping. We often check in if our reaction matches the intention of the other, like “I don’t enjoy this, but I can tell you meant well.” We express our primary needs and emotions rather than just our secondary demands, like “I miss you” instead of “Can we talk?” And I think this is because we relearn how to behave multiple times. And we need to reflect on our impact on on others a lot. Because we're never alone and often with other survivors. Plurals act in a manner akin to nonviolent communication as much as they can, without consciously employing NVC methods, because we are aware of our impact on others.
It's a powerful thing. And I think absolutely a way that we can not only contribute to, but also be leaders in other communities and in the world as a greater whole. Which is sort of funny because it makes us our own metanarrative, really. [Laugh] Hmm. And you anything else that you wanted to share or bring up right now? I know there's 1000 things we could talk about, but… [Laughter] So many things.
So, you know, our communities bring change, a homecoming recognition that saves lives. Our communities are our peer-to-peer support basis. And that's why it's so important that our communities are recognized and supported by organizations like the ISSTD. It's funny to me how they offer mentorship to therapist who see like three DID clients a week, but I and others speak to 10s of systems in a day. And we and others are disregarded as they are really not there for the survivors, only therapists. And I think that's really a lack in in helping the overall community.
So support even in just helping each other in the same way clinicians get mentorship support?
Right. Well, one thing that would help tremendously is updated guidelines. And those are available to everyone. But they're not updated. And so I feel that the people who have access to other resources on the ISSTD have more knowledge from this day and time.
So, two things just to know. And we can talk about this more in privately, and I can share some things later. But I did talk to Christine Forner this week, or last week. And she talked about that that is in motion, the updating of the guidelines. The other thing. Have you heard about or seen the new guidelines that came out in Australia this week? And ISSTD endorsed them. No, I have not, actually. Okay. I'm very curious about that. It was really fascinating because it was a completely different approach than the other guidelines. Wow. Okay. No, I know I will have to read up on that. I will share that with you later. But it talks, it's more about sort of the process between the therapist and the client as opposed to what the therapist needs to do to the client. Okay. So even the perspective was a completely different approach. Great. So it's not out there yet. But as far as the updated ISSTD guidelines?
Right. Yeah. So what I can say publicly said I know the ISSTD will eventually update our guidelines. But I also know that as long as the clinical community does not collaborate with the people actually live with this disorder, and they take only their clinical observations and perspectives as knowledge, they will miss out on a viewpoint that is extremely important. And from the autism community, they have a great quote, it's “Nothing about us without us.” And I think that is so important. Because to us survivors it feels like there are some people in a back room talking about us. And, and our voices are important because we live with this every day.
Absolutely. I absolutely agree. And I think that's really important. Christine understands that in a way. She is a survivor herself. Not with DID, or the same kinds of things that we are survivors of. Right. But there are more and more people who are survivors who are participating. And that was one challenge I had, because I heard you and the Crisses talking about that, and about needing them to include survivors and survivor perspectives. And yet, I was not participating because I was afraid. And I felt challenged in my own coming out process because I did not feel safe for us to come out and participate. But I couldn't not do that and then also complain about it. Right. Because I was in a position to be helpful and I was not doing that. And so that's part of why we went ahead and came out to the ISSTD and shared that, so that we can be a participant that fits their mold but also has this story.
Right. And we are so proud of you for taking this step. It must have been such a big step also to agree upon with like the rest of all of you. So well done. That's really amazing. And such a big step. We are so proud of you.
It's very gracious of you. And I appreciate the challenge from you all because it was a really hard thing. And the response, though, was really positive. And so it's, again, a place of tension because part of me is like this is actually huge progress. And now I know others who are there. And so the group of us can try to help make a difference in that. But at the same time there's that tension because I know it's not happening like today. Like, in my head I'm like, “We can write this, why can't you just release it?” [Laughter] Right. Exactly. It should already be done. Yeah. I mean, yeah. [Laughter] It's hard to be, sort of respect the struggle of it and let it be a process in that world as much as in my own world. And so I think, “I'm finally ready. Why isn't it done?” But I understand. And there's other pieces to that are still unresolved, and I get that. But at least it's a conversation, and that counts for something. And so I'm so grateful for your work and advocacy, and empowering—not just educating, which is so, so important—but also empowering survivors. Because that's where the healing is. And that's where the real damage was done. No matter what happened to our bodies, our power was taken away. And you are working so hard to help give power back to people. And I think that's a beautiful thing. Thank you.
So in the DSM-5 we read that dissociative identity disorder is a mostly covert disorder, which means that other people might have trouble noticing that we have DID, or that we're switching. And I want to talk a little bit about that because I wonder if that's truly the case. So there is this idea that we live in a singular normative society. Everyone around us, most people around us, are not plural, do not have DID. And we want to be able to live in this society without standing out too much. So we mask like people with autism can mask their autism. And often we hide out of shame or the expectancy of being judged and misunderstood. And what we see in our community is that once people get comfortable, they can truly be themselves. And that sometimes means that their plurality shows itself in a different way. Where it might be visible that someone is switching, or someone's tone of voice might change, or their body language changes. And that is something that is accepted within our community and our culture. It's a normal part of our culture. It's not something off or weird or wrong or something went wrong so that's why the person is switching. And so I wonder if DID is really covert once once we heal? Or maybe even when we don't heal. Because if a child part is out, how is that covert?
Right. Well, when I'm thinking about context, as you mentioned, sort of masking, I’m, that makes me think of context. And I know that when we go to healing conferences, or therapeutic conferences, or have a meet up with a gathering of different people with DID, that it's not a big deal to see a child alter, or to meet several alters in your friends, or to notice those changes. And again, like you said earlier, just “Oh, who's out now?” Or “Who am I talking to?” and greeting them as normally as you would if another person had walked up and joined the group.
Exactly, yes, that is normal within our culture and our communities. And it's a gorgeous, beautiful thing. And then, but if you know, if you become friends with someone where you interact with each other like that, the DID is really not covert anymore. Right. So it's only covert when it needs to be, when it's the most safe option for us. And I think many different minority groups experienced that.
So that makes it almost a defense mechanism, as opposed to DID specific or part of the disorder itself. Instead of it being related, the masking, so to speak, to use your words from before, instead of that being specific as in a criteria of DID, that's really more about safety and ways we would defend ourselves naturally in any other kind of group setting with another disorder even.
Yes, exactly. Exactly. And, and I'm doing it in this call, right? I'm not switching on purpose. Because I know what Catherine wants to say, and I know what Lisa wants to say, so I can just say it for them. And I'll make a big deal out of it for any other people who are listening to this. But if I was either meeting up with you in person, or even having this call with you in person, that might be very different. Right. And I might switch instead of translate what the others inside are saying,
Which goes back to functional multiplicity. Because that's an example of being able to work together into function just fine.
Right, exactly. And so there is this word, I got to try to pronounce it, it's assimilationism. And the definition of assimilationism is the act of encouraging minority cultural groups to be similar to larger cultural groups. And as an example, I wrote down, “some clients can fully integrate, so hence you should aim for that as well in order to fit in with the culture at large.” And so if you combine that with ableism, and is DID really covert, or is that the clinical observation that a therapist is getting from us in the 15 minutes that we see them a week for most of us? And because they're outside the culture? Yeah.
So understanding some of these issues are really actually goes back to cultural competency for a therapist.
Yes, it does. I remember my very first intake at the DID center off front. I was joking with my social worker that when we would go there, they would ask us, “Do you want coffee, tea or both?” [Laughter] And then that never happened. But we thought, really, I thought, I was expecting that a warm culture where everyone was welcome. It was the opposite. But you know that that's the jokes we can make with our friends or even be be serious about them when they come over for coffee or tea or both.
Right, right. That's such a good example. You know I, like the body is deaf and we have the cochlear implants, right? Right. So I'm thinking about how doing a podcast is difficult and challenging for me because of the ears and speaking. And we've come so far and we're doing fine. And I can speak with you and we can do this. But if I went to the school to pick up my children, or to have a meeting with the children at the school, there would be an interpreter, and I wouldn't voice at all. Because if I voiced at the school, they would stop providing interpreters because they would think I could talk, which is not the same as being able to hear. Right. And talking with you now where there's a Bluetooth adaption that puts you right in my brain and I can hear you just fine, is much easier than when we met at the restaurant and there was lots of background noise.
Yeah, I totally get that. Do you know that The Sorority wrote an article on cultural plurality that compares our our culture of plurality to the Deaf community and the Deaf culture,
That's amazing, I need to look it up. I did talk to them on the podcast in the very beginning of the podcast, back like a year ago. So I do know of them and have talked to them, so I need to contact them and ask about this article.
Part of what makes me think of what you're sharing is, in the Deaf community is called code-switching. So, okay, it's like, when you can speak English here, because it's America, and why would Americans learn any other language? [Laughter] Right. No, if you’re going to speak, or speak and sign, or sign-. So if I were with, in my family, the husband and the children, there’s six children. Half of us are deaf and have cochlear implants or hearing aids, and half of them are hearing. Right. And so at home, everything we do is in sign language and voice. Okay. But if I'm with just one of my children who is hearing, I can just voice to that child and that child may or may not sign to me. Hmm. If I'm with my deaf daughters, I absolutely only sign with them. Right. If there's not any hearing people. Yeah. And so being able to change between that. Just the same as you and your son could speak Dutch or English or whatever. Right. That changing of languages is called code-switching. Hmm. And I feel like that happens with DID in how overt or covert the presentation of it is. Yeah, very much so. I think that might be a very good comparison. It's fascinating.
You've given me a lot to think about as always. [Laughter] Yes. Oh, my goodness. Oh, my goodness. Okay. Anything else you can think of? Any of you? [Laughter] Many of us.
Um. [pause] I don't know. I can talk for hours. I have many more things I could say.
We need to just have you back. We've actually been talking about it with you for a year almost. But things just keep happening, and it just hadn't happened. But I saw this article, and I was like, “Okay, we have to for sure do it now.”
Yes. Can I say that I look forward to the new Plural Positivity World Conference in 2020? Absolutely. So yeah. That's gonna be very exciting. I will be doing multiple sessions myself again, and we already have 20 plus speakers. So it's going to be another great year.
So maybe what we need to do is have you back on before the Plural Positivity Conference to talk about it when it's coming up. Oh, yes. That would be great. Yeah, that would be good? Yeah, that's a great idea. Thank you. Okay. So we'll pretend we write that down and maybe we’ll remember when it's coming up again.
Thank you so much for talking to me.
Thank you so much for inviting me to be on the Systemspeak podcast. It was our pleasure, our honor. And, yes. Really, really nice opportunity. Thank you so much.
That was so fancy. You're so good at this.
Fake it till you make it.
Oh, my goodness. Okay, I gotta let you go because I'm deteriorating into something else so...
Thank you so much. Have a great day.
Bye.
[Break]
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