Unveiling the Risks of 988 with PsychForce Report TV

A black background features the word "COMMITTABLE" in large, bold, white letters. Below it, in a smaller font, is a multiple-choice question: "Sane, Not Sane, Other." To the right, a light green tiled wall shows a bathroom sink with three pill bottles and spilled pills on the counter. Superimposed on the tiles is the title "PsychForce Report" in a serif font, and the author's name, "ROB WIPOND," is scrawled in black marker on the tiles.

In this episode of PsychForce Report TV, hosts Rob Wipond and Jesse Mangan delve into the critical issues surrounding America’s largest suicide and crisis hotline, 988. Joining them are special guests from Trans Lifeline’s Advocacy Department, major leaders behind the groundbreaking report, “The Problem with 988: How America’s Largest Hotline Violates Consent, Compromises Safety, and Fails the People.”

This in-depth conversation explores the stark realities of calling 988, moving beyond the often-touted promise of immediate mental health support. Olka and Nemu share their extensive research and personal experiences, revealing the alarming prevalence of non-consensual interventions, including unwanted and unexpected visits from law enforcement. The discussion highlights the lack of transparency and the potential for severe adverse consequences, particularly for marginalized communities such as trans and LGBTQIA+ individuals, Black, Indigenous, and people of color.

Listeners will gain crucial insights into:

  • The frequency of police involvement: Discover the latest research on how often 988 calls lead to law enforcement interventions, and the implications for caller safety.
  • The lack of privacy protections: Understand the risks associated with recorded calls and text exchanges, and the absence of robust privacy safeguards.
  • The variability of 988 response: Learn about the decentralized structure of 988, the inconsistent training of operators, and the unpredictable nature of the support received.
  • The impact on vulnerable communities: Explore how non-consensual interventions disproportionately affect marginalized groups, and the unique challenges they face.
  • Alternatives to 988: Discover resources like Trans Lifeline’s Safe Hotlines and other community-based crisis lines that prioritize consent and autonomy.
  • The federal funding and political influence: Understand how SAMHSA’s funding and political pressure effects the availability of crisis lines that do not use nonconsensual interventions.

This episode is a must-listen for anyone concerned about mental health crisis response, the rights of individuals in distress, and the urgent need for safer, more transparent alternatives. Listen to or read the transcript below for a vital discussion that will empower you with knowledge about the realities of 988.

Further Resources:

Transcript:

Jesse Mangan: Hi, I’m Jesse Mangan. I use he, him pronouns.

Rob Wipond: And I’m Rob Wipond, and I use he, him, or they, and this is a special edition of Psych Force Report with guests!

Nemu: Hi, everyone. Thanks so much for having us. My name is Nemu. I use they, them pronouns, and I am the Education and Communications Manager of the Safe Hotlines Campaign.

Olka: And my name is Olka. I use they and she pronouns. I am the Campaign Strategy and Program Manager for Trans Lifelines’ Safe Hotlines Campaign and I’m am so excited to be here with ya’ll today.

JM: So, to start, I wanted to ask each of you how you got involved in looking to 988 and what sort of work and investigations you’ve been doing to look at 988 and the broader questions around it. , so to start, Nemu. What got you involved in looking at 988?

Nemu: Yeah, well, first I’d love to introduce Trans Lifeline a little bit for folks who aren’t aware. Trans Lifeline is a peer support and advocacy organization. We connect trans people to both community support and resources that we need to, not just survive, but ideally, thrive. So Trans Lifeline is a hotline that does not engage in police or emergency intervention without an explicit consent from a caller. There’s going to be buffers leading up to that, such as providing information around potential risks of emergency interventions and police. And the hotline itself has been running for over 10 years now. So I mention all of that to kind of give insight into why we’re focusing on 988. So Trans Lifeline has experience as an organization around how to provide meaningful peer support and crisis support without the policies and practices we see 988 engaging, in which is a dependency on non-consensual emergency interventions. I know Oka is super eager to introduce the campaign and what we’ve been working, on so I’m going to pass it off to them to share more.

Olka: The Safe Hotlines Campaign at Trans Lifeline is an advocacy campaign that really uplifts the lived experiences of people who have faced crisis, who’ve reached out for help and maybe have found that that help was not, in fact, helpful. My personal experience in getting into this work is through being really a first responder for crisis for a family member of mine who has a severe mental health diagnosis, and, through that experience, I have witnessed a lot of the failings of our crisis care system in this country. So coming into this campaign for me was extremely personal, wanting to educate folks about current hotline policies and practices so that people know what they’re getting into when they are reaching out for help. We are advocating for the end of surveillance tools on these lines; for the end of non-consensual police interventions and, generally, to create crisis care—mental health care—that is actually safe, that is transparent, and that honors the autonomy and dignity of individuals and does not make their situations worse while saying that they’re trying to help them.

RW: And I just want to add, you’re not tooting your own horn here. You’ve done an amazing report. The two of you were major leaders on writing that report called The Problem with 988. A lot of research went into that, and that’s just been an amazing contribution to public understanding of what’s happening with the 988 Lifeline.

My own interest goes back, really, to suicide crisis lines generally over 20-some years ago, when just a person I was interviewing at the time—I was researching involuntary commitment—and said, “Yeah, I ended up locked up after I called the local anonymous crisis line.” That had nothing to do—this was long before 988 was even created, it was only created a couple years ago—so this was a long time before then. And she said, “Yeah, while I was on the phone, I said something like, I’m going to take my own life in the Millennium,” or something—that was still a ways away at the time, but she was just kind of sharing her feelings and, in any case, the police showed up at her door, and I was aghast when she told me the story—but a very trustworthy, credible source. And, so, I immediately did contact the local crisis lifeline and said. “Can this happen? Do you do this?” And they were very reluctant to talk about it; indeed tried to get the story from being written.

But, subsequent to that I continued to investigate and, in subsequent years, found out more and more. And really, the turning point for me was several years ago, when I got the response from a freedom of information request from the National Suicide Prevention Lifeline, which went on to become 988 in the United States, and I’ll just—for Canadians out there. now there’s a Canadian 988 as well; they’re not affiliated, but it’s a similar model. So, in any case, yeah, when I got that freedom of information request back, I was amazed at what I learned there, and how prevalent these non-consensual emergency interventions are, and the range of different types. So it’s not only just people who are feeling perhaps feeling suicidal who might get these kind of interventions, but third parties can call and ask for an intervention of some kind. If there’s suspected child abuse of some kind, that will trigger an intervention. So, people should really kind of know this about these lines.

Olka: Thank you so much for uplifting that report, Rob. Yes, our report is called The Problem with 988: How America’s Largest Hotline Violates Consent, Compromises Safety, and Fails the People. If you all are interested in checking that out, please go to translifeline.org/988-report. There is a lot of great information in there, especially about the potential negative consequences of reaching out to a hotline.

Rob, as you just mentioned, there are so many that can severely disrupt people’s lives, and, at the end of the day, do the opposite of what we all want, which is, it dissuades people from reaching out for help when the consequences for reaching out for help are devastating.

JM: So, in preparation for this conversation about 988, I was talking to a friend who’s an adult—very politically active—and when I told him what the conversation was going to be about, he said, “What is 988?” So, I wanted to bring that question to all of you: What is 988?

Olka: So, 988 is America’s largest suicide and crisis hotline, formerly the National Suicide Prevention Lifeline. And it is intended to provide crisis response and care to individuals who might find themselves struggling either with mental health diagnosis, emotional distress. And it is essentially meant to be 911, but specifically for mental health support. 

JM: So, with that intent of providing care for people in crisis. what happens when you call 988?

RW: Maybe I’ll just address that quickly first, because I wanted to add for people who don’t know around the structure of 988, that it’s really over 200 different call centers that are affiliated together right now. And that’s part of what makes it a little unpredictable—what’s going to happen when you call?

So, you know, you’ll make this call; you go through a bit of a, a sort of few little checks along the way, and then they bring you into a conversation. So, you have to fill out, sometimes, a little bit of information about yourself along the way, and then you’ll be in a conversation. But you really don’t know what call center you’ve necessarily been patched through to at that time, or even what sort of person is on the other side of that line; what kind of background they have; whether they have professional training of any kind or don’t; whether they’re a peer. So, this is something that really introduces a lot of variability into what happens.

JM: So, how does that work when you call and you’re answering some questions? Is it the same questions no matter where you are? Is it the same type of person answering no matter where you are? What are the guidelines for who responds to the call and the process that guide you through when you call?

Nemu: So, like Rob mentioned, there are over 200 centers. Typically, 988 attempts to pair centers with the callers’ either area code that they’re calling from or a zip code that they might be required to enter to engage in a chat-based discussion. Depending on where the center itself is located, or the capacity of a center, a caller might be directed to one of the backup centers or, you know, people move, their phone number might be associated with where they used to live and they might be connected to a center that isn’t where they’re actually currently based. 

There’s a couple things that we can expect from every 988 call, which is that they are required across all centers to ask two questions. The first being around suicide, such as, “Have you had thoughts of suicide in the past few days, including today?,” regardless of whether a caller is actually calling about that issue or experience. And we also know that 988 will ask a caller about any instances of self- arm, whether they’ve engaged in self harm today and, again, these are sort of from the start of a conversation and aren’t directed by the person calling themselves, but are required by operators to ask everyone.

JM: So, that that feels like a really important element. I’ve been through risk assessments before and I’ve been through risk assessments that led to hospitalizations and, after those experiences, I’m very sensitive about anyone asking me about suicidal ideation and wanting to clarify, ideation and intent, and the complexity of that conversation. So, when the call response automatically starts with that question, what is the training for the people who are asking that question? Like, how do they know? Or is there any evidence that they are being trained on how to navigate the complexity of how someone might respond to a question about ideation or self harm?

Olka: So, as Rob mentioned, there are all sorts of different types of people who are answering these calls or responding to these texts and chats. Some folks do have maybe some level of clinical or therapeutic training; many do not. So, 988 lays out kind of a framework and steps of taking after somebody answers potentially yes to one of these questions. There’s a whole list of things that they have to get through to get all the way to the end once someone says yes to any one of these questions. And so it really is variable, it is dependent on who you are talking to, it is dependent on their personal experience.

In some of the study that we have done, folks who have called these hotlines, depending on who they talk to, really talk about having to manage the anxieties and feelings of the operator based on whether they answer yes to these questions. Right? So, sometimes you will get someone who might really understand these nuances of suicidality, as you have mentioned, and you might get someone else who’s very anxious and who has been tasked with quote unquote saving somebody’s life and will be incredibly triggered and feel that they have to take action based on somebody’s answers to these questions. So, it is highly variable and there’s a lot of worry in that reality. 

JM: So, there are some potentially traumatic adverse interactions that can happen when someone calls 988. What sort of situations have you heard about from people who have had these experiences? What sort of adverse experiences have happened when someone calls 988?

Nemu: There are actually a handful of emergency-related responses that can happen that can include police. It can include Emergency Medical Services or even mobile crisis teams. But first, why don’t I start with highlighting two of the biggest responses that we see happen when interventions take place after calling 988?

So, first is police response. 988 has a partnership with local 911 PSAPs (Public Service Answering Points) where 988 itself doesn’t have geolocation ability. It can’t determine on its own the exact location of a caller, but if 988 determines someone is at imminent risk—which is very, very subjective, right?—it can then work with the local 911 center to then send police response to a help seeker’s location.

I think that we are very well aware, living in the United States, the issue with police response. Particularly, we know that people who are perceived to have mental illness are 16 times more likely to experience police violence. And we also know that at least one in four people in the United States who are murdered by police were perceived by police to have a mental illness. And I use the term “mental illness” kind of loosely here. I know that that’s not one that everyone identifies with, but that is one that was used in these studies in particular. Often times, we also see psychiatric hospitalization kind of touted as an alternative to police response. So folks are really encouraging the mental health care system as a response instead of police, but something that we’re really trying to disrupt here is the idea that that is an alternative to policing. We’re actually recognizing and hearing from folks’ lived experiences that psychiatric hospitalization is simply an expansion of kind of the same issues that we see with police and that we see with a response of incarceration. We see people who are similarly experiencing violence. People might even be handcuffed or detained in these kind of intended-to-be-healing hospital settings. We see people being detained for a minimum of 72 hours, but, of course, that can lead to weeks and months. And we also see people who are then being handed hospital bills in the thousands or tens of thousands for a treatment that many people don’t actually consent to when they reach out to hotlines. They might be seeking a kind of deescalation or maybe a resource around preventing further crisis that might be triggered by financial instability. And, instead, we see people experiencing violence, experiencing bills.

JM: Everything you’re saying really resonates with me, because I have had that experience of reaching out to someone for help and ending up strapped into a gurney and then being transported to a hospital in a place I didn’t know, I didn’t recognize. And I have had that experience of being left with a bill and being unemployed, and having that added stress tackled on to what I was already experiencing. And so, it makes me really wonder why this system is set up the way it is, and why there isn’t more transparency about what could happen if you make that call.

RW: Well, I just want to jump on that little piece of it too; why there isn’t more transparency, because that’s another level that’s happening here for many people. And even if almost none of the things play out, because sometimes this can play out in a more sensitive way, depending on who those responders are. Maybe a mobile crisis team shows up; maybe you’re treated really respectfully at the hospital. These things can happen as well, and that’s better. But even then, often people have such a profound sense of betrayal if they had no idea this could happen, and there is so little transparency. There’s a little more now, over the last year or two, thanks to the efforts of the Safe Hotlines project and some journalists. I think I’ve been part of that effort to help educate the public. But definitely, one way or another, I think social media has played a huge role too in educating people; probably the biggest role out there, where people who’ve experienced this are just telling each other about it and cautioning each other. 

But it is this profound sense of betrayal that people have, that they believed it was an anonymous and confidential free service that they could contact and, next thing they know, the police or somebody else shows up at their workplace or at their school, at their home. They can be exposed. Perhaps they were confiding in something very intimate, very deep for them, and now, suddenly, maybe they didn’t want the people in their immediate environment to know. Well, now those are the people that know more than any. They can walk into the middle of a family, suddenly the police will and say, “I got to take your child away now because 988 contacted 911 and we’re here,” and they get the story—the parents get the story. So, everything’s been exposed. Like, I’ve talked to children who are completely traumatized by that piece of it alone, let alone what then plays out after that. This is a huge part of the problem.

JM: So, you had mentioned that sometimes it does work out more respectfully but, obviously, there is the potential for something severe and traumatic that could happen. Do you have any sense of how often these sorts of calls do result in a police intervention or some sort of non-consensual intervention?

RW: Yeah, I’ll just comment on that quickly because it’s been—basically the data we have…it’s very, very difficult to get the data over the years. Just with the pressure that’s been put upon the administrators of 988, they’ve started to release a little more along these lines. And they consistently said it’s about 2%, or less than 2%. But that’s of all calls. The vast majority of calls that go into 988 have nothing to do with an emergency situation. Could be somebody just wanted to talk about a problem they’re trying to solve in their life, workplace troubles, or anything, just looking for a local resource and they’re trying to find somebody who can give them advice on it, all sorts of other things. So, out of the people who are calling specifically with feelings of suicidal idation, the numbers seem to go up to as high as 20% in some of the data I’ve seen. And, again, we’re really cobbling data together here.

And then, the overall number that I’ve gotten more recently from a study done by NRI, which is the wing of the National Association of State Mental Health Program Directors—the research arm—, they have been gathering some data through surveys from crisis lines across the country, and they put the number between more like five and 7% of all calls. And so, again, that would be even a higher percent probably among people who are feeling suicidal at the time. So, these are pretty significant numbers. We can say, “Well, that sounds like a small number.” Well, if you think of like an airplane, as an example. If literally every one of every 50 people, let alone two or three or four, out of every 50 people are being pulled off the plane for a security review of some kind, that’s a pretty significant number of people. And it adds up out of millions of calls in America. This can be tens of thousands into hundreds of thousands of people a year that we’re talking about.

JM: So there is a potentially alarming number of people who are receiving non-consensual interventions that can possibly include something that’s violent or involving some sort of restraint, physical or otherwise. Is there any research about what communities are more likely to be impacted and what communities might be more vulnerable to this sort of intervention and the repercussions of it?

Olka: Absolutely. Like Rob said, the figures may be small in percentage but they are, in fact, quite large in numbers of people who are experiencing this. And, as we know, that folks who have less societal power are often disproportionately impacted by whatever it is that might happen in their lives. And so, when we talk about trans and LGBTQIA youth specifically, there’s a lot of additional impacts that can happen specifically. Right? If you call for help and now somebody is showing up to your house or your workplace or your school, you might be outed, you might be outed for whatever it is that is already causing you distress. For folks who are living within families who might not be as accepting, that might impact your housing or your safety. We also know that trans people and queer people generally experience higher levels of mistreatment by police, in hospitals.

And all of this is similar for Black folks, Indigenous people, other folks of color. Where, really, the impacts—let’s just say finances, for example—, are going to be far more for folks who have less resources than people who do not. So, if you are getting committed or involuntarily placed into a hospital for three days and you lose your job, now not only do you not have a job, you have thousands of dollars in bills, but you might also lose your housing. If you have children, that might impact your parental status. So, all of these things that can spiral out of one call or contact with a hotline, with trans people specifically, there are also additional risks. So, anytime a trans person is incarcerated, whether it’s medical incarceration or in a jail or prison, there is the possibility that they’re going to be put in the wrong gender unit. And that means an increased level of violence. Especially in jails and prisons, we know how much sexual violence is happening in those spaces; that is a reality. We also know that forcibly-hospitalized trans people are often not getting gender-affirming care, or medication, or resources, or even providers who understand anything about transness

Simultaneously, being hospitalized, psychiatrically hospitalized, could be used in the future as a way to deny trans people gender-affirming care. To this day, many people who need surgery or medications have to be approved, or have a letter written by a psychologist or someone who says they have no other mental illness that could account for their transness. Which is an awful and archaic way of even thinking about gender identity. But if there is potentially an excuse, right now, like, “Oh, you’ve been hospitalized. We can provide an evidence trail of you might have something else going on so that you don’t know that you’re trans.” I mean it’s it’s absolutely absurd. And the reality of being a trans person is that the societal rejection, the implications of that rejection, are the things that are oftentimes causing suicidality or crisis, or a lack of resources. And so, to say that you’re helping someone but to actually be adding onto that situation is really absurd. 

And I also want to speak to the impacts on youth. Right? One of the things that 988 is really doing is targeting young people in their schools, at their programs, asking youth to call and reach out and what we know is that, when you are a young person, if you become systems-impacted, most likely that will follow you for the rest of your life. Once you are in those systems, whether it is the medical system or the prison and jail system, that is far more likely to reoccur over and over and over again, having lifelong implications. So these are not small things that can happen as a result of calling, again, asking for help.

RW: I wanted to sort of go back to something mentioned earlier which was that the stated intent of something, of 988 specifically, is care. It is to provide a source for people in the stress to find care, but everything that is being discussed here in terms of the possibility of non-consensual interventions, the possibility of police intervention, the possibility of being stacked with medical bills, or it could end a career before it even starts. If you have something like this on your records, all those possibilities. they aren’t hypothetical. They’re not hard to find if you look. So, given all of those realities, why is 988 set up the way it is and why aren’t there more alternatives that don’t involve non-consensual interventions?

Nemu: Not sure that we mentioned it earlier, and I think that we should have. So, one of the defining traits of 988 is that it is a federally-funded hotline. So, today it has received around 1.5 billion of federal funding. It is overseen by the federal government, more specifically the Substance Abuse and Mental Health Services Administration. And so, therefore, it is bound by these federal policies that do engage in police collaboration and non-consensual emergency services. It is also accredited by accreditors that require similarly non-consensual interventions. And I want to bring these up because these this gives an idea of the kind of system that we’re looking at. As when we look at hotlines, of course, there are also hotlines like Trans Lifeline that don’t engage with police intervention non-consensually. And so, it is possible to have these alternatives and we know that they’re effective. However, these services are often super underfunded and don’t have the capacity to be able to meet communities at the level that 988 is because of these federal requirements.

I want to urge the idea for folks to dream what would it look like if that $1.5 billion of federal funding were distributed among alternative resources. Ttrans Lifeline has a whole list of some alternative resources. if folks are interested. I’d like to uplift it. It can be viewed at translifeline.org/radicalcare.  It’s going to be a bunch of resources that don’t engage in non-consensual interventions both hotlines and peer support groups alike.

JM: I just want to make sure that it’s clear the federal government, SAMHSA, distributes money for 988 and all the services within. That money is then distributed to call centers who have contractually agreed to have non-consensual interventions. Does that mean that alternatives like Trans Lifeline are being excluded from any federal money because they’re providing a safer alternative? 

Olka: Absolutely, absolutely, absolutely. And it really is a shame. Yes, part of the reality is that they are mandated through law to engage with police, to have these partnerships. However, the federal government does not necessarily mandate every single situation in which they must engage in these ways. So, one of the things—we’ve engaged with 988 officials directly—and one of the things that they really bring up often times to justify the non-consensual interventions that are happening, is this extreme example of people calling them and being in a suicide attempt while they are on the phone with them. Right? That is the stance that they’re often taking and saying. “Well, this is the reason why we could not possibly get rid of non-consensual interventions, because sometimes people are calling us and we have someone literally dying on the phone.” Which, obviously, is likely a very rare situation that is happening and, as we are pointing out to them, that is not what their policy is exclusive to. Their policy is not exclusive just to folks who are in an attempt at the moment, and those are the only people for whom a non-consensual intervention is happening, whether they’re unresponsive or they couldn’t consent, but they were able to call. Right, right. That’s not their policy. Their policy is so much more expansive than that, and includes far more people than who could ever need an emergency intervention.

And simultaneously, the federal government doesn’t actually mandate that they have to do it non-consensually. 988 could include information about the possibility for emergency intervention. In their call wait times, when the operator asks you one of these two questions, they could tell you, right, like, “Hey, I’m going to call 911.” Right? Even when you call 911 and someone is coming the operator will say, “We’re sending someone.” Most folks have the understanding of what 911 is. But this idea that they have to have emergency interventions without consent due to mandating by the federal government is not true. They can be far more inventive about it. Sure, maybe they’re mandated to be in relationship with police, with 911, to use those services. But we take the stance and tell them, and will continue telling them, that you actually can be more transparent, be more consensual and let people be within their agency, their choice, and their dignity, even if you have to do this particular thing by law.

RW: And politically… So, the legislation has allowed states, has authorized states, to levy a fee, a tax, in order to fund 988. So, more and more states are now looking at that. Some of them have already implemented it in some form. And so, that means that the 988 call centers are going to get a huge boost in funding going down the road here. And all the lines like Trans Lifeline and all the other community locally-based crisis lines that exist will not get that funding, they don’t get a share of that funding. That’s the way the legislation was written. And so, it’s endangering, basically, every other crisis line out there, including any crisis lifeline of those that may not engage in these kinds of interventions.

On top of that, really recent developments, we’ve seen that SAMHSA has been making efforts politically to try to mandate, to try to compel in its own standards, that all other crisis lifelines should, in order to be a quote unquote accredited lifeline of some kind, that they would have to engage in these kinds of non-consensual interventions. So, there’s something politically going on here that is vital for people to understand. Behind the scenes, I don’t know the ins and outs of really how this is being formulated, but the intent seems to be to make it so that no one else can do this any other way. I don’t know if they can actually legislatively prevent crisis lines of different kinds from doing it, but clearly that’s the political intent and the heft behind it is going to be the funding. And if SAMHSA on top of that uses its own funding powers separate from the 988 funding, if it uses its other kind of leverages that it has over the kinds of other sorts of funding it gives to organizations and its political clout, which is enormous everywhere; if they use that to try to clamp down on anyone doing it any other way, that’s what we could be staring at—is ultimately nowhere else to call.

JM: Something that has been really evident to me since the rollout of 988, is that it gives people something to say. On news programs and podcasts, anytime they talk about anything they they view might be a little bit concerning, they’ll roll out 988, they’ll say, “Call 988. Here’s a service.” And it sort of absolves them of liability. And so, I wonder about the role of liability in all of this. Is that an explanation for why SAMHSA might be so adamant about including these non-consensual interventions in contracts that people have to sign in order to get money? Is this about liability or is there some other, I don’t know, possible explanation for why these methods are the only methods the federal government is willing to fund?

Olka: I’m so curious to hear Rob’s answer on this, but what I know to be true, is that 988 claims absolutely no liability for any of the experience that you have on their service, or as a result of their service. That is very clearly stated in their terms of service. They do not guarantee their service to be confidential, quality, helpful—any of the things that they advertise. If you go to their terms of service, it is very revelatory that the caller, the help seeker, assumes 100% of the risk. So, that is not the answer.

JM: Well, there’s something I’m really curious about in terms of that response, which is, is there an actual expectation that someone who calls in a moment of crisis has read the terms and conditions? Do they honestly think that that’s happening?

RW: No, no one, no one thinks that. And, honestly, prior to people like us putting public pressure on them, and other social media, and everything else that we’ve talked about, their terms and conditions actually weren’t even that honest. They didn’t say anything, they often didn’t even notify people. They’re only now notifying people if you go into the depths of these things and read and go, “Oh, wait a minute. What? What?” You know, that’s only happened over the last year or so from this pressure. So, yeah. And in response to Olka’s comment, too, there’s just…there’s no liability. I’ve talked to lawyers about it. They don’t have any liab—so they have a waiver there for sure, but they also don’t, like, in actual court cases that have ever emerged, typically, a judge would not look at a 10 or 15 minute interaction on a phone the same as it might a doctor-patient relationship or something like that, where there could be a higher level of liability there; if you’re a regular patient of mine over time and all of that I’ve come to know you. In this kind of situation, there isn’t really any legally.

But one person used the term to me of “moral liability.” So, he just kind of talked about that feeling you have, when you’re on the other end of the line, hearing somebody in maybe a—maybe they do sound really kind of desperate and upset, and distressed, and you start to worry because you’re anxious too, and and you have this sense of responsibility, “I need to do something. What can I do?” And this is the strangeness of the whole setup, right? “Well, I have no connection with you. I’m a stranger, so there’s nothing I can do, nothing.” Right? Like, if it was me and you, right? Like, maybe me and a friend of mine, I could go visit them at their home and say, “Hey! Come on let’s go out and do something together.” I have all these other ways of potentially intervening which is not me calling the police. But in this situation, I don’t know you. I’m only on the line with you for this short period of tim. You’ve made me anxious. I have no perspective, no context at all. And there’s only one tool in the toolbox, and that is, I call 911. And so, that’s what’s happening in a lot of these cases. I just think, “Well, that’s the best thing I can do.” And I, honestly, do believe—because that is we’ve seen this throughout the mental health system—that it’s not just a 988. Throughout the mental health system, there is this general belief that this is a way of responding to a problem situation, is to call 911 and get somebody taken up to a psychiatric hospital. Because you have this sort of vague belief in your mind that they’re going to get quote unquote care, they’re going to get support and affection, and you—all these things that, in fact, often do not happen in that kind of situation. So, that’s really what’s driving it, I think, a certain naïveté in the public, generally. 

But what even happens at the average psychiatric hospital, and it’s often not pleasant, and that’s not to say it never is. Certainly, lots of people report, “Hey, I went up there.” Usually if it’s voluntary, right? And there’s some consent involved and all of that, you’re a little more likely to be treated respectfully. But if you’re a marginalized group, an oppressed group, a vulnerable group in some way, if you’re already being seen through prejudiced eyes in some context or other, maybe you’ve already been pulled up there unwillingly, so you’re resistant, you’re becoming anxious, you’re becoming angry. Maybe any of these things could be happening. Then the whole thing can go off the rails very quickly. But most people don’t know that, so, that’s a real driver in all this.JM: 

JM: Something I’m struck by with these responses is, it’s very uncomfortable to sit with uncertainty; it’s very uncomfortable to feel powerless. And so, when you’re trying to help, genuinely trying to help, and you feel powerless, action feels like something. And so, I wonder about resources like Trans Lifeline, and I’m curious about what sort of conviction it takes to sit with that potential uncertainty to just to sit and listen and be present with someone even though you don’t control this situation. So, I’m curious, working in that space, what is the experience like? What is, what can motivate you to really sit with someone in uncertainty and bring that empathy and compassion, without feeling the need to control? What is that experience like?

Olka: So, Nemu and I don’t take calls directly, though we will be soon, on our line. But something that we understand from the folks who are on those calls, first of all, is that the call is the resource. That if somebody has picked up the phone to reach out to you, whether—even if they are expressing ideation, there is a level of, “I want support, and I don’t maybe want to follow through with these other plans.” And so, that’s one thing to know. We have heard from folks about experiences on 988 and other hotlines, where they are rushed off of the phone, or there is a time limit; they can only be spoken to for a certain amount of time. And, can you imagine the additional pressure that that creates? Recently, our Executive Director talked about listening into one of the calls that came into Trans Lifeline, and that call lasted for two hours. Right? Because that person needed that level of support, and investment, and time. And so, that is one way to just be with an individual through the entire experience that they’re having, or at least until they feel like they can take it from there.

So, that’s one thing, 988 is trying to answer a large volume of calls, get through a whole lot of people, but that is not always the most quality way of supporting folks. So, that’s really, first of all, something to know is that the call and the outreach is the resource. That is often times what people are needing and what they are reaching out to you for, if they’re not needing actual resources like housing or money, which we often can’t provide. 988 cannot provide housing or money. Trans Lifeline, at this point, we are bringing back our program that will provide grants for folks, but we often cannot provide the level of resourcing that people actually need. And in those situations, at the very least, we can make sure that we are not making those situations worse.

Nemu: I also really want to uplift that Trans Lifeline is a peer-support hotline. So, one of the principles is that, in general, trans people—we are the experts of our own gender experience, of our own experience moving through the world as trans people. That also carries out through folks experiencing crisis. People in crisis are their own experts of what is most supportive in that moment and, often times, our hotline it’s not simply, like, an operator listening and trying to make sense of what someone is saying, but it’s an aspect of, “Oh, I’m in this with you. I can understand what you were going through and, furthermore, your experience isn’t just an individual reaction or even just, like, a predisposed way that you are. But it makes sense in this world, it makes sense in this world, that you are feeling distress, because your housing is unstable, or because you’re not able to access a surgery that you really need.” And so, Trans Lifeline can also help deescalate situations like this, not only by understanding, but by being there with a caller, looking up resources—which admittedly, there’s not always resources—but by just being there with the caller, and not trying to jump to solutions, that a caller isn’t even asking for.

JM: I want to ask a clarifying question about Trans Lifeline. When you’re there as a peer support and you’re helping that person find whatever you can, help them find—and just being there and listening; if someone were to say, “I feel like right now maybe I need a medical professional,” would the person on the call from Trans Lifeline, would they be open to facilitating that? That’s something that they would help facilitate, so they’re not going to a non-consensual intervention, but they might help the person if that’s what the person wants

Olka: Yes. So, in our entire history, first of all, that hasn’t happened. More often than anything, people are specifically calling Trans Lifeline because we don’t call the police. We have heard that over, and over, and over; that it just creates this level of ease for folks to be able to just share honestly with (us), and know that the consequences of that sharing won’t be something that will damage them more. So, that hasn’t happened, and yes, that is our policy, that if somebody were to ask for that or to consent into that, that we would be with them through that experience. We would tell them what could potentially happen; we would be with them all the way through potentially that happening. Right? It is not a just, like, we’re going to pass you off and call 911, and you go from here; whatever happens to you, happens. There is a lot of consent and intention involved but, again, it actually has not happened in the history of our organization, which I think is very stark, and something that many could learn from—that folks are needing resources that do not include state or other types of interventions that they are not consenting to.

RW: And it is often the case that the crisis lines that don’t trace calls, that don’t do these kind of non-consensual interventions, do tend to be quote unquote peer-run lines, so often people who’ve been through the psychiatric system themselves, people of color speaking to people of color, and things—so often, yeah, this notion of peer is really crucial. And that’s a good place to look if you’re not trans so you can’t call Trans Lifeline, you could call some other lifeline, but the way to research it—that’s a good place to start, but it’s not a guarantee. I have to say so, yeah, you still have to kind of investigate, and often the best thing to do is contact them when you’re in no way in distress, and make that super clear, off the top, “I’m in no distress today. I simply want to understand your policies around this.” And try to get something in writing or, at least, stated over the phone very clearly about what that particular call center’s policy are on this issue.

JM: So, I’ve spoken to physicians who have, in the United States, described the process of involuntary hospitalization or admitting someone for involuntary hospitalization, as the easiest thing to do. So, for an ER physician, if they encounter someone they don’t know what else to do (with), they’re essentially passing that person on to someone else. And it sounds like with a peer-led service, like with Trans Lifeline specifically, it’s really about being present and being the resource. I think that was very powerful, being the resource and not being a conduit to the next step. I’m wondering if, in any of the research you’ve been doing, have you heard from the people who are answering these calls about what their experience is? Like, do they feel pressured to pass someone on to police? Do they feel pressured to be a conduit rather than the resource itself? Have you seen anything that, I don’t know, gives insight into the experience of the people answering the calls and why they might be initiating these processes?

Nemu: So, our research currently focuses on the experience of survivors of psychiatric hospitalizations and interventions, but you’re pointing out a great gap—right? Jesse,—that it would be amazing to hear more from operators, their experiences carrying out policies and practices that they may not even align with. One resource I can point to, of folks already kind of doing that, is the Trevor Project’s Union. There’s a handful of operators coming forth about their experience, unfortunately, calling police on queer youth reaching out for help, and how much they oppose those policies. So, I really want to uplift that for folks.

JM: Something I wanted to follow up on which was mentioned earlier, was the idea that it isn’t just an individual calling a call center and having an unwanted response. I think someone mentioned that it is family members or community members who are calling on someone else. They’re calling 988 and getting a response. Is that right? Like, people are experiencing an unwanted response that they didn’t even initiate is that…

RW: Yeah, that’s right, yeah. Yeah, so, and it looks like it’s a pretty large percentage. We don’t have great data on this, but looking at some studies that were done, it can be as high as 25% of calls are coming from third parties to talk about situations in their lives that they’re trying to find solutions for, and these seem to precipitate these kinds of non-consensual emergency interventions at an even higher rate overall. That’s the basic data we know, and it makes a lot of sense because this is often one of the prime ways that 911 directly gets activated too. People are often calling about someone else for a wellness check. People are not often calling about themselves, and so, it’s not all that surprising that this is happening with 988. And I think it’s going to happen even more now that 988 is becoming such a familiar number in the general population. People are being directed, “Oh, this is safer. This is better than calling 911. Whenever you have a concern about yourself or someone else, call 988?” So, I think it’s going to be more likely, not less so, and yeah, that’s it. So, you wouldn’t even know, you didn’t participate at all and suddenly you’re getting this kind of an intervention. 

JM: What should people be thinking about before crisis has happened, and how should people be preparing for potentially being in crisis and looking for a resource?

Nemu: There’s this resource called “pod mapping” that I’ve done with loved ones, where it’s essentially anticipating before crisis, like you’re saying. Who are the people that I want to make an agreement with ahead of time? “Hey, can I call you if I’m going through something even if it’s at 2 a.m.?” You kind of can identify those people, and then from there, you talk through with those people what are the things that you notice is helpful or supportive when you’re going through crisis. Do you want someone just to hold your hand? Someone to help provide you food? Do you want someone to call a hotline or explicitly not call a hotline for you? And so, that is—you can look up pod mopping on the internet. It’s a really useful resource that I can speak to on my own lived experience for that.

Now, we also, at Safe Hotlines, have a couple of recommendations for people who do reach out to hotlines, specifically 988. So, as we mentioned earlier in this episode, 988 is going to ask you a couple of questions around your suicidal ideation and your experience of self harm. Usually, saying “yes” to either of those questions is going to make you primed to experience an intervention,  and so,  as awful as it is, we encourage people who don’t want to experience an intervention to keep that in mind, and say what they need to say to keep themselves safe. That can look like lying which, of course, is not going to be the most helpful, but from a harm reductive standpoint, it might allow you to access some level of support that avoids experiencing really, really harmful interventions. 

RW: One thing that we haven’t touched on—I think is very important—is even if none of these things happen to you, even if you simply have a very nice call and you feel better, this can turn out to be disastrous as well because now, what we’re starting to learn about, is that they are recording all of these conversations at 988 and storing that data. They have no clear deletion policy for it. There seems to be different call centers or got different privacy policies. Some don’t have any policies at all, and, please Nemu, you can address this as well, because you were the ones that that looked at this in some detail, too. I think you looked at many different call centers, as I did, to try to find out what is the policy. And even though there is one that’s officially for 988, it doesn’t mean that the individual call centers that are part of it are even following it. They have different ones, and so, we’ve definitely found evidence that they’re being shared. In some cases, these call centers are actually run by corporations that are directly mining those recordings and transcripts of those recordings for AI development, and so on.

And we don’t know all of the uses; they’re giving it to researchers to do study. So you have to ask yourself, “Gee, if I sit there…”—like, supposedly (these) are anonymized calls, but you have to ask yourself. “Okay, so, if they don’t have my phone number, but it’s my voice, or are there any details that I shared?” So, they’ve taken away a name and a phone number, maybe, at the top. But other than that, it’s the entire conversation that you had. You have to ask yourself, “Is there anything in there that I would figure breaches my confidence? That is actually something I don’t want just being shared with people beyond this call in some context or other, that I don’t even know?” And that is now part of the privacy policy in terms and conditions as stated at 988. Although, they’re still cloaking it. So, there’s a lot of haziness in this area right now. People need to be mindful. We definitely have the evidence that some degree of sharing of this is going on.

JM: So you’re saying that when you—someone—calls 988, that call could be recorded, there’s data being collected, and there’s no clear policy about what can and can not be done with that data. Is that right?

RW: That’s right they have “semi clear” kind of policies around the what they call the “personally identifiable information.” So the use of your phone number or anything else they might have got from you, personally. if you gave them your actual name, and so forth. So they have a somewhat of a policy around that, in the sense that they still reserve the right to share it with police, as in these kinds of situations. But they aren’t clear at all around what they’re doing with the recorded conversations, and the extent of it. But we’ve got lots and lots of evidence sort of emerging here and there, sporadically, that things are happening with that data. And that’s why they don’t want to actually make their policy really clear, I think, because they don’t want that exposed at the level that it could be exposed at. If they really flat out just admitted, “Yes, we’re recording everything and we’re sharing it with anybody and everybody,” but that largely looks like what it’s happening. So, that’s my opinion. I don’t know if Nemu or Olka want to weigh in, based on what you’ve seen. And, is that your impression as well?

Olka: Yes, Rob, that is definitely my impression as well. What they do say is that they may use identifiable information. Right? This is not even deidentified; this is identifiable information for “quality improvement.” So, as you can imagine, “quality improvement” can mean an entire training cohort listening to your call. It can mean handing it over, like you said, to these corporations who are partnering explicitly with AI companies to develop AI that then is supposedly for training operators. But, of course, can be used far beyond that, and they reserve the right to use your identifying information to contact emergency services. And, Rob, as you mentioned, while 988 on the federal level—right?—the ones who set the standard say, “These are the ways that we will use your information.” What they have said about folks in their network is that “they recommend”—they just recommend for them to have similar privacy policies. They recommend for them to use the same systems that they have set up in order to provide security and security measures. However, it is not a requirement and, as we know—maybe you know, maybe you don’t know—there’s a lot of data insecurity at the moment, with a lot of hacking happening to financial institutions, all sorts of organizations where people’s information is ending up on the dark web en masse, being sold en masse. And so, if you can imagine that, you have this system with such sensitive data where the security protocol is just a recommendation for over 200 centers. What does that mean for the vulnerability of that data even beyond how they are using and sharing it with others?

JM: I mean, this—I guess this might sound extreme—but from what you just described, if I were to call 988, it’s possible I might become part of some research project. So, essentially, I’m becoming a participant in a project that I never agreed to or was aware of. 

RW: Yeah, that’s exactly it. And I think it’s almost pretty well guaranteed that you are. Like, I don’t think they’re picking and choosing, “Oh, we’re going to research this one but not that one.” They’re just grabbing all of this data, throwing it all together, and then sharing it out for researchers. And then, those researchers might have specific groups that they’re targeting, or specific issues, or things like that. But, as far as—it’s pretty well guaranteed that if you call 988, this is happening. And I want to highlight something else,  because this is really dangerous. We don’t know the extent of how available this information is going to be, so, notwithstanding the hacking question, the legal side of how available it’s going to be, for example, if I’m in a child custody dispute with my partner and I know my partner’s been calling 988, are those recordings available to me? I don’t know that they’re not. Because this is not the same, as we’ve already said it, is not the same as a doctor-patient relationship. They make it very clear, if you actually go read their policies, that these are not truly confidential calls. So, what is the legal extent of this?

And you can imagine a kind of case where maybe something really horrible happens, like, somebody who calls 988 goes out and and murders someone, and it was revealed that they called 988. Are you telling me those 988 records are not going to be available to the court? You bet. And there might be some civil rights organizations that will protest—right?—going, “Wait a minute. We got to look at the limits here of what’s available,” but every judge is going to frown upon it, go, “Wait a minute. This is a murder.” Or we’re talking about, “Why should they have any privacy rights?” Because this is how these laws often get, you know, precedent get set. And so, it’ll go up through the courts and they’ll say. “Yes, 988 record should be available in a case like this.” And then, what other kinds of cases do they become available in? So, this is something I think everybody needs to be mindful of, is… yeah, when you create a giant—as the hackers and surveillance experts call it—a “honeypot of data;” highly confidential, highly personal data out there. The value of this thing is enormous. If I know, for example, that certain politicians, high-profile people, are calling and that they’re probably getting directed to a particular call center, now I even know where to find it. But it sounds like that the vibrant emotional health the nonprofit that oversees this is collecting all of it, as far as we know. So there might even be an additional honeypot there that’s national. But even just every individual call center has one. So, to me, this is just off the hook, really. And we need more privacy experts wading into this issue right now, before really bad stuff starts happening, from what I’m seeing. 

JW: As we wrap up, I want to go around, and have everyone respond to a question and ask a question. The question I want you to respond to is, what is one thing you want everyone to know about 988? And then I’m hoping, maybe after that, you could maybe pose a question and say, is there something that is still not transparent that you would like answered? So, one thing you want everyone to know about 988, and what’s one question you still have about 988. Let’s start with Rob.

RW: Well, yeah, I just think everybody needs to know what we’ve been talking about here today. That if you are at least educated about the possibility of this and the risks, I think great. That’s so—you’re so much better off knowing this, in my opinion, than not. So, that’s great. There’s a million questions. I wish that the 988 Lifeline would be more transparent overall on a whole range of issues. I think the biggest one right now, is what I was just talking about, which is what they’re doing with the data; what’s really happening there, and do they have a plan to initiate some actual responsible privacy policies. Because they don’t right now; they don’t at all.

JW: Thank you. Next, how about Olka? What is one thing you want everyone to know about 988, and what is one question you still have about 988?

Olka: I think one thing I really want people to know about 988, and I think this is specifically for folks who potentially have used the resource and have found it helpful, or who might think to themselves. “Oh, if I was in a situation where I could not consent into an emergency intervention, I would still want somebody to come,” I think that’s something that we hear often from folks, like, “Well, I would hope that somebody would come for me.” What I want folks to know is, that the intention of saving lives, or being there for people, or supporting folks in emotional crisis—the intention of uplifting people’s wellness cannot be more than the impact of creating disaster and havoc in some people’s lives—right? That one does not negate the other and I think, similarly, my question really for 988, for 988 officials, is, what is your strategy? Like, what is your strategy if you are saying that you’re here to prevent suicide, to reduce suicide, what is your strategy, and is it effective? Right? I really want them to ask themselves that honest question, because if we look at the impacts of what is happening to folks, the extremely negative impacts that are happening to folks as a result of reaching out to 988, the answer to that question could not possibly be that, “Yes, we’re being effective.” And that is something that I really want folks to ask themselves, and to center the impact that they are having over the intentions that they are holding.

JM: Yeah, that’s such a powerful question in terms of how much trauma justifies one life you believe you saved. And for people to really think about, if you were the person being traumatized. is that worth it for you? Is there a risk you’re willing to take? Yeah… and Nemu, what is one thing you want everyone to know about 988 and what is one question you still have about 988?

Nemu: You know, one of the things we hear often, both in our own interviews with folks who’ve called 988—and we have a form that folks can continue to fill out sharing their experiences calling 988—is (they are) surprised that police were able to show up to their location, even though they ended their call, they hung up immediately, or they turned their phone off, or they used a Google Voice number. I want folks to know that, when 988 works with 911 to geolocate, they are able to contact your internet provider or your phone provider, who are then contractually obligated to provide your X, Y, and Z coordinates—Z coordinates being your vertical coordinate—say you’re in an apartment building, which floor you are on. And these are incredibly accurate within 50 m or 150 ft. So, I want folks to know that, not only can the police come, but some of these preventative measures don’t work with 988, unfortunately.

One of my questions for 988 that remains is, how many interventions are happening? I know we’ve been asking this over and over. How many are happening? Who are they happening to? And why?

JM: Thank you all for bringing all this information and all these questions to the conversation. Hopefully, we’ll be able to do something like this again, and I just want to thank you all for being in the space.

RW: Yeah, yeah. I want to thank you both for joining Jesse and I today. Thanks, it’s been terrific. Really, thank you for the work you’ve been doing on this issue, and the professional level of it, and also your personal connection that I can really feel, and thank you for that. And yeah, I’m thinking 988 doesn’t seem to be going away, so it would be great to have you back again in the future and we can talk about new developments, and what’s going on.

Nemu: Thank you both so much for having us. It is such a joy and honor to be your first guests on this collaboration. Thank you.