#SamaritansRadar Twitter App – my thoughts on why this is extremely problematic

(CN: discussion of mental health, suicide, elements of self-harm)

This will be another mental health post, this time centered on the Twitter app that mental health and suicide prevention charity Samaritans have launched, called Samaritans Radar. You can read about this app on their website in this link: http://www.samaritans.org/radarpress The basic premise is that a user can sign up to the radar, and it will then scan the Tweets of people they follow on Twitter, flagging to the user if certain keywords are used that imply mental crisis or suicidal ideation. The user can then view their friend’s Tweet and make a judgment call as to whether this requires further action. Sounds good, right? Friends can look out for potentially vulnerable friends and step in when it seems they’re having a crisis. Here’s what I and many fellow sufferers of mental health conditions find problematic about this app. Now, I don’t think I have anything new input that hasn’t already been said by others, but I would like to have my say and add my voice to those of us protesting the issues around this app. I do want to throw in here in case people don’t read to the end that Samaritans is a fantastic charity and offers a lot of great help to people in very acute crises. For many people this has meant they were able to resist a suicide attempt when they might not have otherwise. I’ve read that the app is in no way associated with the volunteers who run the 24-hour phone service, so please do not feel discouraged about contacting them if you need to.

Many of an individual’s Twitter followers are strangers, not friends
The app is based on the Twitter list of the user, not those who may be in crisis. This means that, should I mention suicide or self-harm in my Tweets, any stranger who follows me and also uses the Samaritans app would get an email about this. I find this idea very uncomfortable and invasive, that followers whom I don’t even know would get specific emails highlighting the app’s perception of my mental health state and prompting this stranger to do something about it. You may be thinking that support must be good whoever it comes from, right? Well, no, not really. Support can come from myriad sources, but in general, if I were in a suicidal frame of mind and in acute crisis, the type of help I’d be looking for wouldn’t be from a stranger on Twitter who needed an app to alert them that things weren’t well with me. You might also be thinking “What’s the big deal; they’d see your Tweets if they follow you anyway.” It’s the idea of being monitored by strangers for what they perceive as signs of suicidal ideation, who are then prompted by an app on what steps to take. I think if you need to be altered via an app that I may be in crisis, then we’re not close enough for you to provide the type of help I need, anyway. The app would be much improved if the mental illness sufferer, i.e. the “targets” of this help, were able to provide a definite list of who could and could not be alerted by this app. Close friends and family being alerted of vocabulary that seems suicidal is a much better idea than any potential follower being able to take some form of control over my mental health, an idea which provides a nice segue into my next point.

We must have agency over our own mental health
There is something very unsettling and invasive about the idea of others deciding that I’m suicidal or depressed enough to warrant their intervention and/or the introduction of outsiders without my explicit consent. This is pasted from the Samaritans website, in the link I posted earlier (emphasis mine):

“Twitter’s wider collaboration with Samaritans includes a referral process which works in two ways: Twitter has Samaritans listed within their Help Centre as the go-to organisation for suicide prevention in the UK and ROI. When somebody gets reported as suicidal, the Twitter Trust & Safety team verifies the report and if they deem it accurate, they get in touch with both the reporter and the reported account, to share recommendations and contact information for Samaritans.”

Everyone I’ve spoken with or whose words I’ve seen about this would *NOT* appreciate this. If we are deemed to be suicidal by particular Tweets, when we may or may not actually be acutely suicidal at that moment, someone would “report” this in the name of help and we’d be contacted by outside sources whether Twitter or Samaritans or whoever. This removes agency; we have the right to control over how we deal with our mental health and don’t appreciate this control falling into the hands of strangers on Twitter, who decide that we merit intervention without actually talking to us about it. If you’re not close enough to send me a message offering support or asking how I am, then you’re not close enough to justify the involvement of outside elements. Many of us have different ways of coping with fluctuating severity in our mental illnesses; strangers will not know those nuances well enough and will likely try to involve outside elements when they are not actually needed.

Now, I’m aware that to some extent that the idea is for people who have lost an element of control and may not be able to help themselves in that moment, but you have to remember that these people have entire lives and other contacts, close friends, family, fellow mental health sufferers on their TL. Preventing their potentially imminent suicide probably isn’t contingent on your report if you are an effective stranger on Twitter. You also have to bear in mind that many people without mental illness tend to offer support and comfort via platitudes that actually tend to make things worse, but that’s another post altogether. Maybe I’m overreacting and people wouldn’t go to the extent of “reporting” if they are virtual strangers to the person in crisis. But that doesn’t mean this will never happen. Anyway, the point still stands: Do NOT involve outside elements in someone’s care without at least contacting them first. If you are not a close friend or family member, you will virtually never be justified to involve outside elements without consent, in my opinion.

It’s a “cookie cutter” approach
Using so-called key words and phrases to detect someone’s suicidal ideation is hardly going to be an exact science. People suffering from mental illnesses are a diverse bunch just as any group will be and we have different ways of coping with our health, with changing circumstances and different words we use to convey these issues. Some people are very explicit even when not in crisis, whereas some don’t mention things even if a suicide attempt is imminent. Personally, I think I am less open about mental health in general when I’m struggling, so if I were suicidal, the clue would be that I *don’t* mention these key words. I don’t know for sure; what I do know is that there is no set of clues that a person puts out when they are suicidal. One person’s “normal” might be another’s “in crisis” and vice versa. I know people who might mention that they are considering methods of suicide at a point when they are not in immediate crisis and don’t need intervention. I know people whose key words when they are suicidal are more likely to do with making plans, finalizing something, getting their affairs in order, becoming content or relieved (mostly because they have decided to make the attempt). The app’s approach will not pick up on all these nuances; it will give many false positives and miss many genuine positives.

What people also need to realize is that for mental illness sufferers and mental health advocates, many of these words and phrases are part of our general, everyday vocabulary. I talk about self-harm often, sometimes when I’m doing it/have done it that day, worried I’ll relapse soon, and sometimes when I haven’t done it for a long time. Many of us mention suicide a lot whether we are having suicidal thoughts at that moment or haven’t for a long time. You might say “Well, the user will see the Tweet and realize it’s out of context”, but it’s not as simple as that. If I write “I can’t stop thinking about self-harm”, you have no idea what I mean by that. I could mean I’m fighting the urge from minute to minute and need immediate intervention or I could mean that I’m in a temptation phase where I know I won’t do anything and that it will soon pass. I often have periods of intense fantasy about self-harm and suicide methods without there being a big danger of me actually doing it. Often the imagining itself is a great comfort. So did that tweet need reporting or not? What if it had said “I can’t stop thinking about suicide”?

The potential for abuse
Finally, the lack of privacy concerning the app, which is intrusive and unsettling as it is, provides a potential for abuse. Many people may have a stalker following them or trolls, who would then take the opportunity to harass someone who may already be in a moment of crisis. Also, many people suffer extreme mental distress even in periods where is little or no risk of them actually attempting or committing suicide, and the last thing anyone needs in those periods is being harassed or trolled. Even people with good intentions can make it worse by offering platitudes.

Basically, I and many others feel like they have done very little or no research with actual sufferers of mental illness on Twitter. It seems to have come from “higher up” where they thought this was a good idea without asking the people concerned. The app could be much improved if the people being monitored could explicitly choose a list of those who would be contacted in the instances of tweets suggesting suicidal ideation. Twitter is a place where many of us who suffer from mental illness find we can be open and often already we receive an enormous amount of support. My fear is that this level of monitoring and intervention will make people shut off. I and many people I know have already explicitly stated that we do NOT want any of our followers using this app to monitor our Tweets. If you want to show support to your friends, try sending a message, ask how they are, if they need to chat or vent, if they need support. Many people don’t know what to say to someone in crisis, and that’s o.k. If you are not a mental health professional, then your friends likely don’t expect you to be able to always say the right thing. Sometimes just an offer that you’re there to listen or even just a sending of virtual hugs or a ❤ can be enough. It means we know you care but may not know what to say.

I hope that the better elements of this app can perhaps be developed into something better and it raises awareness of the problems surrounding this kind of thing that people without mental illness may have never considered.

TW: mental illness, suicide.

TW: mental illness, self-harm, suicide

I haven’t written here for a while now, but I will get onto the general update posts after this one, as I just feel I need to get this all out. (It ends up quite long, and me somewhat rambling about mental illness in general.)

Most of you have possibly already heard the awful news about Robin Williams, who has apparently committed suicide. As I’ve been feeling on the brink of a self-harming relapse for a while recently, this has really hit home to me that some of us really are “lifers” in depression. We get over episodes and feel good, but down the line we don’t know how bad it might get again. I’m somewhat come to terms with this in general, but it’s still hard, of course. So, I just want to use this space to get out everything I need to, and I hope that people don’t see this as me trying in anyway to hijack and derail this tragedy. I hope Robin has finally found peace and he and his family are in my thoughts. I hope to find strength from the loss of a fellow warrior, and I hope that the rest of you in this fight can too. I just want to write this mostly as catharsis for me, but also to educate people some more on what it’s like to fight this, to suffer from mental illness, because, while I haven’t seen any horrible comments relating to Robin, I know that they’re most likely out there and I probably will come across ignorant comments, some intentionally vile, but some from ignorance. I’m trying to fill that void of ignorance for those who are willing to listen.

I’ve suffered from depression and self-harm since about age 10, and I’m what I call a “lifer”. While therapy, medication, and simply time can help in a specific episode, I inevitably will relapse later down the line. I’m aware of this, it’s been happening for more than half my life, and in some ways I accept it. It’s been easier to deal with knowing that a relapse is inevitable; I feel more prepared and feel I can be more open about it than if I and my family pretend that I’m “cured” after an episode wanes. Right now, I am recognizing the signs, and it may or may not turn out to be an actual relapse with harming; sometimes it passes, sometimes I pass an invisible line without having actually harmed again yet where I know I can’t stop it. Maybe it sounds defeatist, but knowing you’re relapsing with a physical illness doesn’t stop it happening, rather it makes you more prepared to deal with it. And as I often say, I’m a proponent of the fact that mental illnesses are physical illnesses that affect mental processes (and often physical ones too actually).

In psychology, I didn’t find therapy helpful for a long time because we were pretending, basically, that I could end the cycle through changing the way I think alone. Well, part of my therapy was to accept that negative things happen in life, and so by a certain point, I told the therapist that this was also something I needed to accept to be able to cope with it: my mental illness, just like my physical, is incurable. I will have good days and bad days, good months and bad months, but I must always be prepared somewhere in my mind for a relapse. Same with the lupus: I spent a lot of time deluding myself that it wasn’t going to get worse, that somehow someday I’d have my old life back. Well, all that did was cause me more upset and disappointment, waking up to find that I wasn’t better, that I was sometimes worse. Coming to terms with the lupus being permanent helped my mindset a lot, and so did the acknowledgment that I was never going to be completely “cured” of my mental illness either.

If you don’t suffer from any form of mental illness, or not so chronically, it can be hard to imagine being in a state of mind where self-harm or suicide seems tempting. Believe it or not, in my good phases, I also can’t imagine wanting to cut, enjoying that pain. I think of some of my worst wounds and cringe hard. I think “How could someone do that to themselves and be able to bear the pain and the gore?” Because to do these things, it needs a certain mindset to do it. It’s not the case that when you’re feeling absolutely amazing that you just think one day “Hmm, I think I’ll cut or kill myself”, even if it seems that way to outsiders, although episodes can come on so suddenly during what you thought was a good phase: my worst wounds, where I was hospitalized, were inflicted the very day I graduated from uni. But even from the graduation to the harming, a swift change of mindset took place. Darkness had settled in.

People have called those who attempt or have committed suicide cowards. They say things like “man up”, that everyone goes through shit and that people should just hoist themselves by the bootstraps and cope. I’m a believer in optimism, and a good attitude can take you far, but it is not miraculous: optimism isn’t going to magically sort out the biochemical imbalance of my brain or indeed cure my lupus by altering my immune system so it stops attacking my own body. If you’ve thought something along those lines, that suicides or harmers are attention-seekers, cowards, that you think they’re beyond help, try this: imagine a bad day you’ve had, a day where for no pinpointable reason you felt inexplicably sad, angry at life, apathetic, perhaps, where nothing seemed to go right, or even though everything was going right you still felt this way, when it should have been an easy case of you saying to yourself “just cheer up, have a positive attitude”. It didn’t help? Sometimes it doesn’t. Sometimes there’s absolutely nothing you can do on a day like that except let it pass. Now imagine that bad day stretched out over weeks, months, years, with no end in sight, and no matter what you do, that darkness, that cloud just doesn’t let up. Would you be a coward for wanting that to end?

I do have days where kicking myself up the bum helps. I have days where I’m moping about and changing my attitude changes everything. But that’s not what I’m talking about, and that’s not what depression is.

Now, it’s not always so explicably constant for people. Many people with depression have amazing days, have weeks or even months where they are, to all outward experience, just fine. I’m not talking people putting on a mask, although that’s a whole other problem. I mean that even while depressed, people can actually have good days. Take grief for example, which is a kind of depression in a way; people grieving have days even in the midst of their grief where they genuinely enjoyed themselves and generally forgot about the loss. Because people with depression can have those intermittent days, or indeed long gaps between episodes, people often thinking we’re not as ill as we make out. Often when people commit suicide, friends and family will say “But they’d gotten much better”: sometimes this apparent improvement is a result of the decision of suicide, which often takes the weight off someone’s shoulders, removes their burden, but also sometimes someone did genuinely get better from an episode and then relapse, which the family doesn’t recognize because if you’re better, then you’re better, surely?

A friend of mine has recently been feeling generally down and dissatisfied with life. When I suggested to her that she was depressed, she said she had considered it, but she had decided she wasn’t, not because things didn’t point to that, but because she had been made to think that being depressed meant constantly crying, not being satisfied with any part of your life. I told her that personally I never cry for myself–mind you, I think part of that is due to having hidden my true feelings, mental and physical, for so long–and that doesn’t mean much in terms of whether you’re depressed or not. I explained to her that many people go through it for a relatively short time; if she’s depressed now, it doesn’t mean she has always been or always will be. But some of us are lifers, and it’s certainly not due to a lack of strength.

This has gotten very long at this stage, and I’m not positive exactly what I wanted to say with it. I just feel that people who are most dismissive of disease, whether mental or physical, are people who complain most about the little things in their own lives. I’m not saying that people can’t complain, but when you act like the world is over because you had one shitty day and then dismiss people who go through worse every single day, it’s kind of crap. Some people make ableist and ignorant comments based on just that, ignorance, but I’ll know the difference when someone make the effort to listen to me and try to understand and makes an effort to change their thinking about mental illness, their ignorance. So often with disability and ableism in general–in fact, in any social oppression issue, really–I’ve had people who think they are “allies”, they try to support the disabled community, but when one of us comes along and says that they’ve said something ableism or that we find an issue with, they often walk out of the conversation, acting like a rebuked child, thinking it’s unfair because they show support for us and we “pick holes in it” or something. Those people are not true allies. On the other hand, I’ve had people, including my twin sister, who’s been there for all my life through my struggles with physical and mental illness, who say ableist things, and then when they’re called out on it, they apologize sincerely and take it on board to try to adapt the way they think about disability and mental illness, which they have no first-hand experience of.

Basically, I’m just asking people, if you haven’t experienced this first-hand, don’t jump to making ignorant or mean comments about Robin Williams or any other sufferer of mental illness. Read and listen to our words to try to understand what it is we’re going through and how you can help. I understand, it’s awkward for you. I can think personally where I’ve been comforting friends who are going through tough times, and I know that sometimes you don’t know what to say. You’re afraid of saying the wrong thing. Listen to your loved one and try to engage with others’ experiences, particularly online, and if you do say the wrong thing and are called out on it, apologize, take it on board, and don’t make the mistake again. You don’t have to have a degree in psychology or psychiatry to support people with mental illness: mostly we just want to know that people are there for us if we need them. Don’t get offended if people then don’t vent to you or confide in you; don’t get offended if your partner or friend or family member is still struggling no matter how much you help, don’t get offended if you get called out for saying the wrong thing or something ignorant or ableist, no matter your intentions, because out of being told you said something insensitive and being dismissed or hearing a cruel comment when you’re trying to fight this, I think we know what’s worse.

Just remember your own bad days and consider how that must be to cope with, day in, day out. Don’t blame us; be there for us. You wouldn’t blame or dismiss a relative with cancer; you’d probably do whatever you could to support them and make sure they’re comfortable. Well, it’s not all that different, really. The main thing is try, and if you’re wrong, adapt.

I hope that Robin Williams is at peace, and I hope that those of us still here in this fight can find strength. I’m hoping I don’t continue down this slope to a relapse, but I know I might. And I know that even if I don’t fall down it this time, there will most likely be a next time. Yes, I am a “lifer”, and it’s scary to think that at any point in the future, I could go back to my worst place, I could find myself in Robin’s position. And so I believe in being as open as I can about my struggles–that doesn’t mean during my episodes, I can talk to family for example about my thoughts and worries, because I most often can’t, but I won’t be ashamed to stand up and say that, yes, I suffer from depression. Yes, I take medication for it. Because if we’re going to help those with mental illnesses and prevent people from taking the final step in removing themselves from their pain, I believe we need openness and understanding; many of us have hidden our struggles because we don’t want to hurt loved ones or make them angry, and suffering in silence is one way to worsen it, to let it progress, sometimes to a point where it’s too late. Please support your loved ones in this fight, even if you can’t understand it fully. I personally have found the panicking about being caught harming worse or just as bad as the feeling that drove me to it, and being able to say to my sister, yes, I did it, and make sure the wounds are cleaned and uninfected, has helped me beyond words. It doesn’t mean she “lets” me do it, it doesn’t mean it doesn’t upset both of us, but bear in mind that guilt is often the strongest emotion in mental illnesses, and is often the one that leads to suicide, so please try not to produce even more guilt in us by blaming us or getting angry with us.

RIP Robin, and all the other warriors we’ve lost.