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Thanks, Teresa! Audaciousness is a great word for it all 😉
I could have sworn I replied previously, yet my reply seems not to be here, so trying again…
I particularly appreciate your last paragraph about just how hard it is to get people to believe any of the truths, once they’ve bought into the myths… Because giving up the myth means so much more than just believing the one truth that with which they might be presented in that moment.
Well, yeah, I mean, overall I agree with you.
But, for example, the Informed Consent laws I’m aware of require:
* Doc to inform someone of the potential risks and benefits of the proposed treatment
* Doc to inform someone of the potential risks and benefits of any *alternative* treatments of which they are reasonably aware
* Doc to inform someone of the potential risks and benefits of doing nothing
So, even if they stop short of calling “bullshit” or saying “I really have no idea what I’m doing, but this is what the latest pharma rep suggested when they stopped by my office”… the above sure would be a nice change. But most doctors don’t come even close.
Thanks, Jim! So frustrating (and understatement) and unjust, I know.
Wasn’t sure which “weird thing” you were referring to?
Either way, thanks for reading/responding 🙂
Yeah, I get what you’re saying and how my comment could be read. In my mind, I was thinking of a particular group of people including Kevin Hines who are basically just going around and telling their stories to make everyone feel good, but kind of supporting the systems way of being at the same time.
And yeah, I think you could rightly accuse me of being invalidating of that specific group of people, I suppose. But I frankly had a *huge* reaction to hearing Kevin for the first time in person… His story no longer sounded like his story. It sounded dramatized, like a one-person show… and a one-person show that supported many of the things that so many of us are trying to rail against. And I don’t know if I’ve *EVER* received so many e-mails as I received in promotion of his film (which, in fairness, I have not yet seen).
So, I suppose you could say I’m being unfair to him, and maybe I am. I’ll just have to accept that as one of my many flaws. But it just feels so very far away from genuine sharing to me, and he has such a big platform.
Thanks for sharing what you’ve seen. Ah, truth in advertising laws… Unfortunately, of course, there *are* some laws (e.g., Informed Consent laws) that *do* suggest there should be ‘truth in advertising’ (at least a lot more truth than there is now), and yet those laws are wholeheartedly ignored without any negative consequence (for the folks responsible for upholding them, yet who are not). So many broken systems complicit with one another in making things what they are these days.
Thanks, Sam. I think what you say is true, but especially challenging when people have been marginalized *before* they open their mouth, I think! Lots of screaming into the void, indeed!
As Steve already pointed out, what I’ve written is about the way stories are handled, restricted, and used and often *not* about the stories themselves. In the case of AAS, I’m not referring to the specific stories at all. I haven’t read most of them. And I don’t think of the authors as “victims”, even if I wish they wouldn’t have participated. For example, I know Leah Harris reasonably well, and I certainly don’t think of her as a hapless victim fallen into a system’s trap. And I’m sure some – maybe even all – of the “winning” stories have value. I do personally take issue with some of the folks who’ve kind of made their careers off this struggle, and go around endlessly telling their stories *without* being clear about what needs to change, or having much experiencing in supporting others to move toward that change because I do feel like I see them getting used. And, I did get pretty uncomfortable with Des’rae’s partner commenting that they’re riding her “suicide star” to fame (I don’t remember quite exactly how it was phrased, but it was something like that) in the ‘S’ word, but all of those things are at least somewhat different topics, even if overlapping.
So, yeah, I am speaking about the contest itself. What it calls upon people to do. How it uses competition between people for these limited amount of funds, yet fails ENTIRELY to actually value their voice beyond the perceived value (often *entertainment* value, in my experience) of their story by not making the conference ITSELF accessible, and so on. As I already said in the article.
As to the Legislative Breakfast, that’s a whole ‘nother example of this phenomenon where they tend to take people who have very little experience sharing their stories and (as I’ve heard with my own ears) sometimes give *very specific* instructions about not saying anything too negative about any mental health service, and then stick them up there to succeed or flounder (often the latter) and ultimately ask for no real change. It’s PAINFUL to watch. And different than the AAS contest. But under the same umbrella.
In any case, I stand by everything I’ve said in the article above.
Thanks for reading and for your comment. And yes, you’re right. It is so hard to figure out how to navigate challenging the way this works, when we are ultimately talking about people’s personal stories and sharing. Yet, it is indeed often fairly apparent when people are being used or shoved in one direction or the other as to how they tell it… And when that story becomes something else other than entirely theirs.
Yes, indeed… “Insane” is a good word for it, but I suspect the ASIST Master Trainer, and the QPR CEO would disagree. :p
Too true, too often. 🙁
Well, I don’t know if I’d go quite as far as saying it only exists outside of the “medical” system, because I think there are few absolutes and I don’t want to rule out anyone’s valid stories… But, I will say that both research and my own experience resonate with what you have to say in that the medical system sure does seem to do a LOT of *getting in the way* of people actually moving forward and beyond such struggle.
Thank you, Rosalee! I’m going to be headed to a “Legislative Breakfast” at the end of this week that is inevitably going to include stories that fit the format you, I, and so many others are pushing back against. I wonder if I might ever reach a point where the screaming in my head while I’m attending will start to come out of my mouth. :p
Thanks, plebtocracy. When I start to think about all the aspects of our society that function in similarly exploitative and corrupt ways I feel a little overwhelmed. And yet, we do need to keep our eyes open lest we get sucked into thinking its okay when it all so clearly is not.
Got it. Okay, thanks for clarifying! 🙂
I always appreciate a good calling out of psychiatry for what it is vs. what it pretends to be!
Thanks for popping up and commenting. 🙂 I’m not sure I totally followed your comment, but I get the undercurrent of “non-compliance” and refusal to conform and all the power (as well as pain) that there is in that, I believe. 🙂 And, I can always appreciate that!
Thanks so much for what you shared. How the legal system functions and intersects with the psychiatric system is so infuriating. I see horrific examples of it all the time, and most people don’t bat an eye because they – once again – think it’s all “for our own good”. It’s really terrible. I’m sorry for what you’ve had to go through.
Apparently not if it’s “for your own good”!
Can you just clarify… I’m not sure what you mean here:
But here’s the thing. How do you you learn anything from it if it’s not the truth and the bare and brutal truth. The fact is, we will never learn by sugar coating anything. It’s just not done that way and we’ll never change anything. The truth is uncomfortable and so is making change, one cannot be done without the other.
You write that as if I had said things should be watered down… I can’t tell if I’m misunderstanding you, or you misunderstood me? But, regardless, I’ll just say nothing I wrote above was meant to suggest we should have to water ourselves down, although I did talk about how people often ask us to do that either “for our own good” or to prevent them from feeling uncomfortable… Neither of which I agree with…
Anyway, thanks again for reading and taking the time to comment 🙂
Wishing I’d read the WHOLE “participant guide” for the AAS story contest before finishing this story…
Some highlights include:
* There’s a $10 fee to submit your story to the competition
* There’s a “guide” on “safe” writing about suicide
* There’s a warning that writers’ submissions will be evaluated by judges who are mental health professionals, and that they may be “contacted” if they are believed to be at imminent risk
Thanks, Alex. 🙂 I’ve gotten a lot from sharing my story, too… Sometimes it’s left me feeling pretty erased (when people have thanked me, followed by immediately speaking in ways that dismiss everything I had to say), but lots of times, it’s been powerful, too. Thanks for being out there doing the work, too. 🙂
Thanks, Bricew. I really appreciate your sharing all this along with your conviction to prioritize morals and ethics over the superficial “goals” our society sets (often to distract us from some of the more covert ones).
Thanks, Bricew. It’s always interesting to me how important language is, and how we hear words differently. I do often challenge people re: “Committed suicide” when I’m in training environments. I do *not* ever tell people they “can’t” or “shouldn’t” use it, but just offer food for thought which is this: “Committed suicide” comes from a time when suicide was being painted overtly as illegal (as in “committed a crime”). Based on that, I personally try not to use that frame… but nor am I fond of “completed suicide” or ever telling people *what* precisely they need to say.
In my experience, telling others (and especially others who have first-hand experience with something) precisely what words they’re supposed to use comes from a special brand of ignorance and insensitivity.
Thanks for sharing some of your mother’s story as it intersects with your own. I too struggle with this idea that we should get to put our own priorities of people living as long as possible on other people who may genuinely just not want to be here. I’ve heard there are other countries where there are supports set up for people who want to die… Even heard at one point of a place of that nature where people could go to get support in killing themselves that supposedly ended up not having people actually go through with it, because it provided such a valuable space for people to talk openly about their struggles and death and everything else. I actually don’t know if that place actually fully exists as it was described to be… But it sounds really interesting if it does.
Thanks, Catnight! The taboo you speak of … the reality that a lot of this comes from a fear of talking about death at all… is definitely one of the things we try to address and bring to the surface with our Alternatives to Suicide work. And it was so weird to watch the ASIST folks twist themselves around the idea that we should be able to talk about suicide, while still sending such a strong message that it should also be really hard and upsetting whenever we talk about death. And yes, it definitely doesn’t have to be like this. There are certainly cultures where talking about death in all its forms is so much more normalized. The issues – being able to talk about death at all and being able to talk about suicide – are absolutely intertwined.
Thanks so much, Richard. And you’re absolutely right.. I shouldn’t have gone alone (from any other than a financial standpoint). Even before some of the worst things happened, it was still painful to be the lone voice in a sea of providers who were all on the same page with the terrible things they were saying. And it made my credibility much lower in a lot of ways.
And good question… Massachusetts doesn’t seem to do much with ASIST right now, but I wouldn’t be surprised if it moved in that direction. We’ll certainly be watching for it 🙂
Thanks, Alex. Yes, mandated reporter is a serious issue, *especially* since so many people claim that it has anything to do with the topic of suicide which it most assuredly does not. But in general as well… It is a real issue. And what I think many people don’t realize is that once DCF is called in, it’s kind of like getting a diagnosis… I was thinking about my house after DCF was called on me. My kids aren’t getting abused. They’ve got pretty well supported, good lives… but how would DCF interpret my house not being so clean a lot of the time, and all sorts of other things that are just fine when you don’t have DCF looking at you through a particular lens…. Oy.
I think the drugs – and their largely unacknowledged contributions to *increasing* emotional ups and downs, disconnections, etc. – definitely have a role. However, I hesitate to say they’re all to blame. The hopelessness that comes with being given some of these diagnoses, the “prognosis” people are given, the hospital environments and how powerless people can feel… All of it also has a role.
Iatrogenic effects are bit… and with more than just the psych drugs.
Yes, I know you’re largely right, and I can’t help but try. And no, not a word… although I e-mailed them *ALL* (Office of Mental Health and Northern Rivers leadership and Board members) again yesterday with a link to this article, and telling them that I am *formally* asking for information on how to file a complaint which I believe they should be legally compelled to provide to me… But nope, nothing.
Yeah, I’ve been in similar situations, too and had to make some really difficult situations. Ultimately, I so appreciate where you landed. It’s where I’ve landed, too. People *need* to be able to say some of those things to other humans and not get locked up for it. That said, there have been occasions when I’ve also said to people, “Hey, it was super unfair when you said that and then disappeared, and I’m feeling angry about that right now.” That (treating them as not so fragile that they can’t handle hearing how what they did impacted me) also turned out to be good for our relationship, though.
Yes, during and following hospitalization is when suicide “risk” is actually the highest according to research, and hospitalization seems to have long-term impact on suicide rates even for people who were hospitalized for reasons other than wanting to kill themselves. It’s pretty staggering and largely ignored data.
Thanks for sharing that, Sam. The idea that knowing that suicide is an option brings a sense of hope, control, and willingness to *keep living* is so hard for so many people to grasp, and yet so true for so many of us.
I hear you, and you’re not the person to suggest I make it about someone else. However, it loses a lot of power when I can’t say “that was me”. Being able to say “that was me” is a huge chunk of the power of sharing these sorts of stories at all. It’s where we get to challenge people’s assumptions in how they might conjure up an image of the person about whom that story is true… I know it’s a risk to me. But in spite of all this, it’s a risk I continue to be willing to take … most of the time. 🙂
Thanks for sharing, Fiachra. You’re so not alone in that, but it’s still not nearly well enough known that that can be a thing.
I’d love to go no a talk show and talk about this. I think the challenge is getting a talk show to want me. :p If anyone has any ideas, I’m more than open to them! Thank you 🙂
Yes, exactly. Unfortunately.
Thanks, oldhead. I’m glad I eluded them, as well… Although, I did get something back from a media person suggesting that they would have been more likely to be interested in helping to get my story “out there” if the consequences had been worse. Oy.
Thanks, madmom. I like that idea of an army. 🙂 Unfortunately, if anything, I think so many people have headed in the opposite direction of any real fight, but hopefully we can turn that back around. 🙂
Thanks, kindredspirit. I’m doing everything I can to get this story out there. No surprise, of course, that the media isn’t interested. First, I’d have to convince them that I shouldn’t, in fact, be locked up forever in order to get them to care. But, I’m working on it as best I can. 🙂
Thanks, Lee! I agree that the language of their name itself is hugely problematic, and powerful. I will check out your YouTube. 🙂
I don’t disagree with you that people don’t want to deal with the politics and just want help. *HOWEVER*, part of the point here is that often they think they’re getting help and they end up getting hurt. Or, if they get legit help at the individual level, it may still contribute to hurt at the systemic level by sustaining the illusion of need for NAMI. None of that ultimately changes anything I’m saying here…
Anyway, I think we’re ultimately basically saying the same thing underneath it all…
You said: “Places like this, or your doctor, or mental heath professional, etc take things like this seriously and follow protocol because if they don’t, they might get hit was a malpractice suit.”
Yes to a certain extent, however:
1) That’s really misguided, and not at all supported by research evidence that says that both assessment of need and the most common interventions used are wildly ineffective.
2) Even the fear of lawsuit is misguided, as successful lawsuits blaming providers for suicide deaths is actually incredibly rare, and especially in situations where there wasn’t egregious neglect (such as there wouldn’t be should want simply *talk* to someone rather than immediately shipping them off for “help”).
3) I don’t even think that’s *truly* the motivation for a lot of people… Having *just* been subjected to a “wellness” check by a provider this past Friday myself, I strongly believe that some of these things are motivated by power and control, and excused under the cover of liability.
I don’t disagree with most of the rest of what you said, but I’m not – and never have – blamed people for falling into NAMI’s clutches. I blame the broader systems (including NAMI) that make that so damn hard to avoid. So, ultimately, I agree with oldhead… if NAMI were gone, we wouldn’t have keep worrying about all this… but that’s certainly not to say that people don’t really struggle or need support. Just not the NAMI trap brand of it.
Systemic oppression and privilege do not preclude the success of members of those groups, but it does speak to the default design of society. For example, our holidays and workweek and how many people are afforded time off are structured around a Christian perspective. When kids are forced to stand and say the Pledge in school or people are asked to swear to tell the truth in courts, a Christian perspective on god works its way in. Presidential candidates suspected of not being Christian have had to go out of their way to prove that they are. These are just small examples, and don’t predict the outcome or impact for each individual which will vary significantly… but it seems strange to me to suggest that folks who follow a Christian practice aren’t privileged in this society in ways that make their way of life at least a bit easier.
It doesn’t seem as if we will come to agreement on this. I believe that the insistence on seeing this as insult rather than a reality of the fabric of our society is a part of what keeps these things in place, and that seems really sad to me. But I don’t really know what else to say about it, and I don’t think it’s worthwhile to get into an extensive argument about it here.
I have to be honest, Oldhead, that sometimes I really do wish you’d give it a rest. You seem like you have so much time to spend in these comment sections actively derailing things, and it can be exhausting to even try to keep up.
Her main point was that she felt I’d insulted white people, and discounted her experience. I did my best to illustrate how that is a misunderstanding of what I said which isn’t an insult toward white people at all.
*You* are the one bent on dismissing that in the name of naming capitalism. Of course capitalism has a role in all this, including the fact that it is capitalism that drives big pharma to use groups like NAMI as they do. And that’s not the whole picture, and none of this – not even the white privilege part – was central to the actual point of this article… although overal features of systemic oppression certainly are.
I can’t be sorry that I included reference to white privilege in the article, because it’s real and it’s important to keep recognizing that fact. But, I am sorry that you received it as an attack, because it surely isn’t one at all. I know it can feel awful, however, to feel as if someone isn’t seeing your own suffering. I believe that you and your family have really struggled, and faced lots of adversity.
I don’t think that that changes that you’ve received from benefit from your whiteness, but I believe that that’s been much harder to see or feel because of all the other benefits you haven’t received.
In the end, privilege really isn’t about the person who possesses it being bad, or not having earned much of what they’ve gained. Rather, it’s about the reality that our society has been built and sustained by people who’ve had their own needs and wants and beliefs most in mind… That means that society centers and prioritizes mostly white, male, cisgender, christian, heterosexual, able-bodied folks with some wealth and education. And for each of those (and other relevant) qualities that one does not possess, there are at least a few more barriers in their way to the success… and people from the dominant groups blaming them for having a tougher time because many from those dominant groups can’t even *see* the barriers the marginalized group might be tripping over… because that’s how privilege works.
Anyway, here’s a couple of samples of what’s out there about white privilege if it’s of interest:
Joy Degruy presentation on Post Traumatic Slave Syndrome: https://youtu.be/BGjSday7f_8
Joy Degruy clip on white privilege: https://youtu.be/dCv4luaBfk4
Article on white privilege: https://www.washingtonpost.com/blogs/post-partisan/wp/2016/01/16/white-privilege-explained/?utm_term=.d7571600149c
Whoever said that to you was also being silly. The reasons why black and other non-white people aren’t more present here runs deep, and is reflected throughout any movement closely associated with pushing back on the psychiatric system. The reasons run from the fact that people of different backgrounds and privileges are shuffled into different systems, to how the psychiatric system and racism already intersect to even further marginalize non-white people, to how shitty white people are at making space and centering voices other than their own or hearing and respecting people other than those they see as representing their own image, and beyond. Whether you call people asking folks here not to use the term “psychiatric slavery” as appropriation or simply a show of lack of respect for the multiple black voices who’ve come here and said it doesn’t sit well with them… it doesn’t really matter. If becoming less white were more important to folks around here, they’ve be willing to give on these points even if they don’t fully agree.
But regardless… I’m not going to continue arguing about this. We’ve been round this circle before.
I wasn’t offended! Just clarifying 🙂
Thanks, Squash. Healthcare facilities, and as I noted above, genetics testing places. All very disturbing. Thank you for taking the time to comment and share your experience!
Will spent a fair amount of lines on ‘peer respite, Frank. It wasn’t just one casual mention. And I think it was out of place. I actually think Will fairly frequently has include off handed lines in several of his blogs here that are targeted at particular people or groups in ways that don’t feel honest to me. This is but one example.
That aside, your reference to “adult babysitting” just tells me you don’t know much about what peer respites are actually intended to be or what the ones done with integrity have to offer, and you are missing my point entirely. I also think it’s strangely naive to suggest that creating alternative supports is a waste of time… that echoes of the criticism many of us often receive about pretending nothing is wrong when we argue against the medical model. Mostly, people who hurl that criticism aren’t actually paying attention… because often many of us *are* acknowledging fully that something may be wrong for lots of people… that their pain and struggles are legit and that they deserve support. Just not within the framework the system has to offer.
I also think you are giving Will way too much credit in what you ascribe to what he was saying there.
I would frame what I’m doing here largely as offering food for thought, and material to counter those who continue to argue in favor of these large entities like NAMI, MHA, etc without unpacking what’s really going on.
That’s neither as personal as venting, nor as productive as offering a solution… but I do see it as being on the road to the latter… or at least a necessary part of ever getting there.
I’m not too sure what to make of this article. It seems a little all over the place. I *think* I appreciate the challenge to using the “creative maladjustment” term as its always struck me as appropriative rather than unifying in any way. But, overall, I’m finding myself a little lost in your point.
I’m also a little perplexed as to why you zeroed in on “peer respite” here. I’m not super fond of that terminology because of the word “peer” and how strangely it’s come to be understood and used within the mental health system. However, your focus on it here suggests to me you have some deeper issue against peer respite (or the people connected to them) than anything else. Ultimately, “hospital alternative” strikes me as no solution, although it’s often a piece of the explanation as to what “peer respite” is. Certainly, I’d see little to no improvement in automatic understanding if I began using that terminology instead of “peer respite” , and may actually see an *increase* in people who *think* they understand what I’m talking about but don’t.
I’m all for looking deeply at the power of language, and I’m not at all against looking for an alternative to “peer respite” , but I question the reason for your focus here.
That’s pretty reductive, Oldhead. I don’t think anyone believes that “psychiatric slavery” is what has chase black and other people of color away from here. In general, non-white people weren’t here to begin with. But weirdly appropriative stuff like the insistence on clinging to that particular phrase, along with appropriation related to MLK and so on certainly doesn’t help.
Thanks, Frank. I totally agree that it is a treatment/medicalization movement which is precisely why NAMI has been such a tool for pharma… that’s precisely the point made by the pharma exec I’ve quoted in multiple nami articles (he talks about how these “advocacy” orgs are better marketing instruments than any “direct to consumer” ads ever could be).
Thanks, Steve, and yeah, for sure you’re right. It is hard to walk away from privilege. Even for generally good people. I wish it were otherwise.
Fair enough, kumininexile! I wish it were a ‘duh’ for more people, though!
Thanks, Catnight! That’s for sure… that NAMI isn’t subtle or nuanced! So frustrating that people continue to live in that bubble and just can’t seem to see what’s right in front of them.
Thanks, Kindredspirit! For reading, and especially for sharing your experience as to what anosognosia truly is!
Wow, nice work, the_Cat! What exactly did they say when you asked about pharma money?
Thanks for sharing your experience here, Shaun! And for taking the time to read all this and be open to things being different than what you were first told. That openness is so important. 🙂
Not really expecting help… Just wanting to say my piece, Oldhead. 🙂
Thanks, yeah_I_survived.. .For reading and sharing some of your own experience. I missed that Mother Jones article (ugh), but yeah, I wish the “liberal” ends of our media and society in general weren’t so hell bent on keeping their head in the sand where psychiatric oppression is concerned. I actually wrote an article about that at one point, too… :p
In case anyone’s curious about that one: https://www.madinamerica.com/2016/04/dear-self-proclaimed-progressives-liberals-humanitarians-youve-really-messed-one/
I don’t think it is accurate to refer to that as Will’s method. I believe you that it is an approach he uses, but certainly doesn’t sound like one he developed himself. Thank you for clarifying, tho!
Can you clarify what you mean when you reference Will Hall’s method?
I’m not sure who this comment is directed at? Did you take my article to be suggesting that only the “sunny side” of voice hearing, etc be shared? That’s certainly not what I was saying… not even close… and I don’t think anyone else was saying that either, tho maybe I missed something?
If that is what you took away from this article at first glance, I hope you’ll read through it again, as it’s just not what it actually says.
There’s one that supposedly Pat Deegan put together, but I’m skeptical of *all* the pre-recorded nonsense for all the reasons I already named. I *will* say, though, that the reason I titled the article “almost” is because there are trainings – such as the ones offered through the western mass rlc – that offer live simulations. That means that people – often including many people who have heard or do hear voices – provided a live simulation experience. We have found some value in that because a) it is offered contextually and b) it is debriefed after the simulation at length and most importantly c) it’s embedded in a broader training that talks about all the other pieces of the experience including how different it can look from person to person and moment to moment.
AND as also noted in the article above, the exercise *still* runs the risk of encouraging people to take away sensationalized ideas and/or generalize… but that is at least also discussed in the debriefing process.
Ultimately, I don’t think even the recorded simulation exercises constructed by people who hear voices could ever not be hugely problematic.
I tend to believe you aren’t replicating the NAMI stuff I speak of. However, my believing that doesn’t mean that I suddenly think it’s a good idea to confuse the language, as that opens the door for further issues with others. I believe you that you and your wife have played the meaningful healing roles for one another that you describe, but I do think It’s much more useful when you use that language as opposed to language that’s been claimed in other ways. (Although, iin general, I hate the ‘peer’ language in the way it’s used today almost entirely across the board._
Thanks for your comment, and I certainly remember you from other posts. You are welcome to come visit, btw!
I think where I remember us diverging most is around what ‘peer’ and the role of family is specifically… that said, I’m not sure we diverge all that much. I *do* think it’s essential to *not* confuse family members with ‘peer supporter’ not because family can’t be key, but because NAMI, the whole ‘family partner’ peer scene, etc have had truly dangerous and damaging implications in how they’ve confused those things… and centered family voices *over* the voices of those most directly impacted.
I also do believe that ‘peer’ is more about how two people interact and the nature of their connection, and I remember you resonating with that… but I just think that needs to work in concert with having key experiences (being in the system, etc) in common or else it drifts too quickly into nami land. Although, as I say that, I can also say that our community takes a pretty broad perspective on what ‘peer’ means, too… So, it’s gray.
But somehow, I think we need to continue to hold the tension that exists between family (especially chosen family like significant others) having really important roles *and* recognizing that very often they still come with power dynamics and other complexities and historical trends that mean differentiating is also important.
I fear I’m rambling… perhaps due to being in a vacation state of mind… but ultimately, I’d be all for more trainings, supports, and opportunities for patterns and other family to have positive impact in someone’s struggles… just not to the point of confusing that with the expectation that someone can typically be in that role *and* be in a ‘peer supporter’ role such as we are usually talking about It here.
I just didn’t mean to repeat the *entire* blog in my comment is all…
Thanks for sharing your experience, rachel777. I think everyone’s experiences are different/unique in some way, but what you described sounds similar to many I’ve heard… especially how the voices connect to something in the environment and self-blame somehow, as well as how the psych drugs didn’t actually make the voices go away. So true for so many people. In any case, thank you for sharing a piece of your experience here.
Yes, that’s a large part of it, for sure!
Thanks, Mark. I think for me, the art has a lot to do with how it’s conveyed… if it’s an art display expressly by “crazy” people – like what nami periodically offers and basically just saying “hey crazy people make good pictures too” – then yeah, not a fan. However, if it’s an art installation respecting people’s experiences, or the difference and brilliance that brings that art forth… I can certainly respect that!
It’s absolutely true, Kindredspirit. And, in fact, there is research at this point I believe that suggests that people’s sense of having control and understanding over what’s happening means they’ll be less negatively impacted by it.
How something impacts us and our lives really *is* the key point… although the mental health system doesn’t necessarily see it that way, and the simulations certainly don’t convey that point at all. For example, I used to have visions telling me to hurt or kill my daughter when she was a baby. I eventually figure out why… they were a message to me about how I was blaming my body for the babies that died by miscarriage before she was born. Once I figured that out, they lost a lot of their power over me. Before that, I at least knew better than to tell anyone about them… I don’t think the system would have cared at all what the visions meant…
Thanks, the_cat! While I do think it’s useful to attempt to increase understanding across people, I don’t think these simulations even begin to actually accomplish that!
I wouldn’t suggest IPS for hearing voices at all, actually. I think the 5 day IPS core training is useful for lots of things, but not that.
However, there are alternatives already established. I struggle with not being too self-promoting, so I left out some of the work we do at my workplace but perhaps I shouldn’t have, so let me offer it here now:
We offer three day trainings intended primarily for current and future hearing voices facilitators and sometimes others join those trainings, as well… but they are long.
My co-worker, Caroline Mazel-Carlton coordinated a webinar specifically geared toward family, and I’m sure she’ll do that again in the future.
She and another co-worker of mine, Marty Hadge, fairly regularly offer three-hour trainings on trauma-informed strategies for working with voice hearing like this one: https://www.surveymonkey.com/r/VoicesPittsfield2019
Caroline, Marty and several others on our team also do a variety of other hearing voices trainings. Everyone who trains on this topic either currently hears voices (true of the majority of our trainers), or has had experiences that fit under the Hearing Voices umbrella.
And we certainly arent the only ones. We have brought out Peter Bullimore and company from England several times, and will have them out again in April. in fact, if you look at our January newsletter, you’ll find information about what Peter and Shaun Hunt will be offering in MA and FL in the spring. https://madmimi.com/s/3ea57d
There is no excuse for the simulations as they are offered. I understand what you are saying, but there *are* better options that simply don’t have the backing of the simulations so people don’t hear about them. That is the result of NAMI and all the other marketing behemoths (see the next article I hope to publish for more on this point). But the options *do* exist. And often they are low cost or free, offered by people who have that experience, and far more meaningful.
We aim to make things accessible. Typically, getting the fee waived is just about e-mailing us to say you want it waived. Although the fees are helpful to sustainability of our work, we don’t count on them. In general, we only say no to someone who’s asked for a fee to be waived when we also just don’t have enough space to offer them a spot.
If you don’t already get it, sign up for our e-newsletter at our website (www.westernmassrlc.org), so you’ll get notified when the next trainings are coming around. 🙂
Thanks for your input on the name! I imagine we will be putting out some thoughts on the choices we come up with in December!! 🙂
Soooo, it’s Community not Center, but yes to the rest! But most begrudgingly for the majority of us who work here. Along those lines, you may want to check this out:
Thanks for reading and taking the time to comment, and feel free to give feedback on our name via that survey! 🙂 In terms of trainings we offer, the vast majority of our trainings are free to in-state folks. There’s a $100 fee for out-of-state people, but it can be waived if it’s cost prohibitive. 🙂
Thank you! 🙂
A good point. I’ve certainly been in a *LOT* of settings where making those in power/in the roles with the power ‘uncomfortable’ sure was frowned upon… and the sensitivity of those folks in power was NOT seen as *their* issue but mine or the others making them uncomfortable.
Oh boy, that does indeed sound like a lot for a ‘family friendly’ walk.
Thanks so much, Irit. Yes, sometimes people who speak loudly and firmly may lose some people, but also act as an important ‘beacon’ of sorts for those who’ve had similar thoughts and haven’t known what to do with them. It can be so important. 🙂
Admittedly, I do use the term ‘provider’ a bunch because I haven’t felt moved to worry too much about the impact of that one-word label on folks working in the system… but it’s a good point that I should probably think harder about the term and what it conveys to everyone about that role.
I find that referring to things as ‘politically correct’ is a way to devalue or cut off the conversation. It communicates that someone is “just doing it to seem cool” or “in the know” or “woke” enough. I’m not saying that that is how you intended that term to come across, but it is how it is very often used (as something derisive in some way) and I can’t help be hear it that way.
The RLC dropped the term ‘peer’ from job titles some years ago, and moved to Advocate. That’s also an imperfect word, but at least moves away from the idea that our job titles need be inextricably linked to something some people will see as part of our identities. I’m sure there are other options, all flawed in some way, but what I also say in this article is that it is less about a list of good and bad words than understanding values and aims.
So, if we know that it’s one of our values to not lock people into mental health-system attached identities, then using *ANY* single word to routinely always refer to ‘them’ probably isn’t consistent with what we are working toward. Not client, not participant, not peer, not individual, not acorn. It’s the institutinalization of the language and the person right along with it that is the problem above all else.
So, I’d be leading people astray if I listed out a bunch of words that are ‘okay’. That’s not the point. The point is figuring out what we are actually trying to accomplish in all this?
Thanks for reading. 🙂 Unfortunately, in my experience, any time a word starts to become a ‘buzz word’ for SAMHSA, the mental health system, etc., it just starts to become hollow. Perhaps there’s something about words uttered by oppressors cannot simultaneously hold value for the oppressed… I think there is sometimes an impossible tension for some folks (particularly those focused on reform rather than abolition, but who still hold some pretty clear lines) who fight for providers to let them define the language, but then should the provider finally listen and use the language as requested by those who’ve until then been ignored or marginalized… it’s anticlimactic because then the language stops sounding so good. So, sure, some of that.
However, some of that is driven by something deeper… So, for example, most providers who use ‘recovery’ language haven’t actually changed a damn thing about the potential they see for people in the system. They consider an acceptable or even *normal* version of ‘recovery’ to be (as I think I mentioned somewhere above in one of the other comments) sitting on the couch, zombified, and just ‘staying out of trouble’. It would *never* be good enough for themselves, but somehow it’s ‘success’ when looking as those in the system. One of the state hospitals in Massachusetts changed its name (when it wasted millions on rebuilding) to a ‘Recovery Center and Hospital’. So, now they’re using ‘recovery’ in relation to forced incarceration. Great.
Additionally, sometimes better language simply gets used to win grants and look good. So, for example, not too long ago, we had to re-bid for our primary contract that funds the RLC and we found ourselves up against a clinical provider…. And it happened to be a clinical provider who’d invested a *LOT* of time learning our language and approach. And they essentially used our own work and words to try and take it from us.
Words are meaningful, but they can also be rendered hollow when they are wielded by people who don’t understand more than their most basic definition, or who then believe that superficial ‘goodness’ is still good when it becomes forced or made hollow by overuse in under informed hands…
Does that make sense? I think there’s probably a lot more to be said on this topic, but hopefully that helps some. 🙂
Thanks for reading, J! I do think that a lot of people do find liberty when they just completely reject what they’ve been told! Not always an easy journey, and I’m never going to personally be one who tells people which journey is right for them (because, at the very least, benevolent force is still force), but I know I personally felt an important shift when I moved from somewhat rebellious to just “fuck off”. 🙂
Thanks for that, Alex. I remember the interaction you’re referencing, but haven’t hung on to any bad feelings about it. 🙂 And, as I recall, you had some valid points, even if roughly offered in parts.
That’s not my experience… that it’s easy to repurpose or reframe words in conversation within the mental health system. Rather, my experience is that routine use of words leads to routine ways of thinking and routine ways of responding to people… And that sometimes it’s absolutely necessary to change the language to signal that people need to change the way they’re thinking and doing things.
In other words, everyone – on every side – gets institutionalized to some degree.
But I do hear what you are saying, and I think that will work some of the time.
Fair enough on the broader potential for ‘recover’, but I do believe that the reality is that when it is used within the mental health system the vast majority of people are referring to ‘recovering’ from an ‘illness’, and I think it’s important to not lose sight of that even if it means something different (just like ‘peer’, etc does) outside of the system.
Thanks for your comment, Stephen. Pushing back on this idea that we need to say things nicely feels very important to me, too. We (RLC) are making a film related to this, actually. 🙂
I appreciate you stating this so plainly, Steve. Very true.
Thanks for reiterating this, Frank. Hopefully it was clear in my article that I agree with you that calling it ‘AOT’ does harm.
I’m not familiar with James Hillman, but thank you for your comment! I do appreciate the idea of going outside of so-called “mental health” in order to better understand it. 🙂
You make an excellent point. Some of the people with whom I’ve intersected and who refer to themselves as ‘in recovery’ are shaking from psych drugs, unable to work (in spite of wanting to), etc. I’ve heard stories from others now living full lives who were told they were doing ‘great’ when they were unable to get off their couch or do more than smoke and drink coffee because of how sedated they were. It’s painful to see. Although who am I to say what someone *should* look like, it’s awful to see that so many have been sold this particular ‘recovery’ bill of goods.
Yeah, I still use resilience periodically, but as systems inhale the appealing words, they do… lose their appeal.
I don’t disagree with most of what you write as I understand it, but I guess I think there are different layers to the conversation. Even though I agree that the medical system has lied to people in ways that *should* have legal consequences, I don’t believe in forcing folks on the receiving end of that to give up words they find meaningful. I don’t find force helpful in general. If I am to regard at least some people who’ve been lied to in these ways as – say – trapped in a cave, I believe it’s my role to go in and shine a light on the pathways out that were previously in shadow and thus invisible. I don’t, however, believe it’s my role to grab them by their arm and drag them down the path I’ve chosen for them. That – more often than not – results in their pulling back and struggling with me, *or* in their coming along because they feel they have no choice, but not really feeling committed to that path themselves and so not really even knowing why they’re there (or necessarily staying). In order to be the best support, I believe I need to accept that people may choose to stay, even if they got their because of lies. It’s only by letting go of that agenda that I believe I make space for people *also* to decide differently and go down the path I was hoping they’d find.
Hope that makes some sense.
I agree it can be a tricky balance, and that different communication styles match different intentions. For example, wanting to get media and general public’s attention may perfectly reasonably involve yelling at a building housing an org you’re protesting while carrying signs with catchy but ‘inflammatory’ slogans. On the other hand, if you actually want to have a conversation with someone, that’s probably not the best place to start.
However, not bending on honest words and realities seems critical in either place. Thank you for not being willing to bend on words like ‘discrimination’, etc.
I have mixed feelings about ‘content warnings’, but I do agree they are a vast improvement and potentially useful in some contexts… The best thing about them as compared to ‘trigger’ warnings is that they say ‘I want you to know what is included here’ vs. ‘This content may be harmful to you.’ Content warnings certainly don’t suggest in quite the same way that ‘trigger warnings’ do that we are all fragile folks that can’t handle certain topics. Yet, I still remain mixed about them, because I still see the heavy use of them resulting in some similar outcomes. Not quite sure where the ‘right’ balance is.
And I hear you on the not wanting to forget, but not wanting to be paralyzed by anger (my own words, not sure if they resonate for you) forever. I can very much relate to that.
That may have been a little intentional, LavenderSage. 🙂 I suppose we can all read different things into ‘on’ vs. ‘in’, and which is better/worse, tho. :p
Sure. It’s not all the mental health system, Steve. But they are rather designed around it being a thing and reinforcing that for all its worth.
Yes, but that sounds a bit of ‘victim blaming’, oldhead. We live in a society filled with systemic oppression, and it’s unfair to expect people to know not to get involved when all signs that they see are pointing in that direction.