Monday, December 11, 2017

Comments by Sera Davidow

Showing 100 of 1254 comments. Show all.

  • Hey Will,

    I’ve been traveling and am super sleepy at the moment, but wanted to write a quick comment since you took the time to name us (Western Mass RLC) in your blog!

    I hear you on the fact that our movement hasn’t been nearly as successful as we want to be or should be or need to be in making real change… And I can totally support the idea of trying to re-evaluate strategies, and decide if we need to change direction a bit (or a lot) and how. This is actually not the first conversation I’ve had of this nature in the last sevenish days.

    However, I feel confused about your proposed strategy here… Not because I think capitalism hasn’t been harmful, but… because I’m not sure lack of capitalism has particularly led to success for individuals with psychiatric histories, and I certainly don’t feel more hopeful about our changing the tide of our political and economic systems than I do about changing the the mental health elements around us…

    I also feel confused about why you called out RLC specifically? I’ll just assume it’s because we’re such a good representation of what peer-to-peer support can actually look like 😉 … But bear in mind we aren’t just doing peer support and sitting around for others to change the world. We’re trying to work on all of it… but we’re definitely open to new ideas about how to move forward. 🙂

    Thanks,

    Sera

  • Hi Patrick,

    I’m finally back. I hope you’ll bear with me in my more detailed response to your piece. It’s going to be long, although it’s late and so I’m afraid it won’t be quite as thorough or well thought out as I would have liked.

    First of all, let me begin by saying (once again) thank you. In order to respond to your blog, I needed to go back and read my own. I forgot how much I liked that particularly blog, so thanks for making me take another look! 🙂

    Okay, but, let’s get down to business. For starters, no, I am totally not kidding you. Do I mean to suggest that this certification has taken a completely healthy ‘peer support’ industry and knocked it off its perch onto the ground? No. ‘Peer support’ was suffering for being an ‘industry’ at all, and it was already deeply in trouble. But, Mental Health America certainly ain’t helping the situation.

    My complaints about Mental Health America (MHA) date back well before this last blog. In fact, the very first blog I ever wrote for Mad in America (back in December of 2012) was about MHA’s disappointing connection to mental health screening tools. See here, for more: https://www.madinamerica.com/2012/12/i-am-the-number-60/

    I followed that up with others, including ‘Dear NAMI: My apologies. I’ve been unfair’ (https://www.madinamerica.com/2014/03/dear-nami-apologies-ive-unfair/) in 2014 (in which I detail MHA and a few other organization’s heavy connections to the pharmaceutical industry), and ‘Do NAMI and MHA suffer from Anosognosia’ (https://www.madinamerica.com/2015/09/do-nami-and-mha-suffer-from-anosognosia/) back in 2015, where I discuss (among other things) Gionfriddo’s testimony in support of the Murphy Bill. So, you see, the problematic roots of MHA run deep.

    But, that aside, let’s look at what you wrote.

    So, the bell. I think you missed quoting what the bell *actually* said, or accurately representing my concerns with it at all. It’s not the ‘mental illness’ language. As harsh as that is on my ears, I understand the language of the era and all that. It’s the actual message. A refresher: Here’s what the bell’s inscription says in full:

    “Cast from shackles which bound them, this bell shall ring out hope for the mentally ill and victory over mental illness.”

    It doesn’t say that the bell shall ring out hope for the ‘mentally ill’ and victory over the system, the abuses they have suffered, the discrimination, the maltreatment, or whatever words might have been most commonly used to describe these phenomenon in that year. No, it suggests the bell ‘ring out hope’ for ‘victory over mental illness.’ That’s a *completely* different message, isn’t it? In fact, it sounds exactly like NAMI’s message, and every other organization that seeks to increase treatment to ward off and conquer these destructive ‘diseases’ without any real critical eye on the system itself (except perhaps to say it doesn’t offer enough beds or access for the “seriously mentally ill”). So, either you have re-interpreted what was written to what you wish it said (or what serves you in this moment), or the author(s) was a really poor writer. Either way, I’m sticking with my assertion that it is tone deaf and gross.

    You continue with several other points (I particularly appreciate the details on who makes what per each certification, so thank you for that), but also misrepresent another point I made here:

    “On a side note, I have no qualms about saying that all of the peers, including me, involved directly in the creation of this credential have just as much right to claim membership in the peer community as anyone else. When other people, particularly those with large audiences, try to disparage our “peerness” I have visions of a so-called recovery center I once visited which required proof of diagnosis before people were allowed access to the facility. It makes the hair on the back of my neck stand up.”

    Not a single time did I question anybody’s ‘peerness.’ Anyone who knows me or has read much of what I written will know that anything that links me to any place that would ask people for their diagnosis (or any other such thing) isn’t taking the time to understand what I’m saying at all.

    This is what is called a straw man argument, Patrick. You are responding to an argument I never made in order to (intentionally or not) distract from the points I actually made. I have *never* questioned the experiences of anyone who claims to have a psychiatric history or to have faced enough life-interrupting challenges to work in a peer role. What I *actually* said was that many organizations eat up the people who have internalized oppression, or who are prone to be silenced and changed when their paycheck comes from those they’ve previously sought to change.

    This is an important argument. It does not seek to diminish one’s experience or identity (and certainly doesn’t seek to ‘prove’ whether or not they qualify for membership to the ‘club’), but rather it questions whether or not they have had or currently have the support to not be swallowed up whole, co-opted and used by the system. And, it further questions the nature of a system that would prefer to hire people in this position than those who have gone through a fuller process of self and system realization.

    Based on what you say here, I’d also go several steps further and question your use of the word ‘peer’ in at least two other ways. First, you seem to be using it to mean an identity. Thus, right from the start, you are using the word in a co-opted manner. ‘Peer’ is not an identity you get to claim because you have some particular life experience. ‘Peer’ is a way of relating to other people. It’s an approach. A way of being. You serve to do the work of co-optation of the role simply by changing it to mean something else. (See my blog, ‘Cheers for Peers’ for more on this: https://www.madinamerica.com/2013/07/cheers-for-peers/)

    Meanwhile, by claiming doctors and licensors and all that can be ‘peers’ you also go a step or two deeper into dangerous territory by not only claiming ‘peer’ as a singular identity, but by also ignoring that peer supports and peer-to-peer relationships are fundamentally built on minimizing power imbalances. So, while doctors, licensors, and all sorts of other people may have psychiatric histories and legitimate wisdom to share from those experiences, they are full of power.

    Is this what you mean when I say I’m questioning people’s ‘peerness,’ Patrick? Because, if so, then I guess you’re right on. I do not question anyone’s right to claim a psychiatric history, or to choose to work in peer support. I do not think someone needs to share a diagnosis, take a qualifying test, prove they’ve been hospitalized, or anything else in order to play this game. But, yes, I sure as hell reject that I am a ‘peer’ (I am a human) or that doctors who have psychiatric histories are able to participate in offering peer support for all the power they hold.

    On to the clinical dance: You say, ” What is not said, through no fault of Ms. Davidow, is that in the initial interview I accentuated that individuals choosing to participate in DBT do so voluntarily and arrive at treatment goals and methods in concert with their therapist.”

    Now it’s my turn to say, ‘Are you kidding me!?’ Hundreds of thousands of people have been forced into DBT-inspired programs. If they’re given a choice at all, sometimes it goes something like this, “So, you could live in this here DBT-based residential program, or… you could be homeless. What do you choose?”

    Additionally, some people who ‘choose’ DBT do so under coercion or misinformation. And, once they’ve ‘chosen,’ and they realize it’s not working for them, they can’t easily or immediately undo their ‘choice.’ So, yeah, what you offer here changes nothing, and simply re-enforces my impression that you’re not paying attention to what’s actually happening to so many people in the mental health system.

    By insisting that peer supporters deviate from listening to the person they’re supporting over all other influences, you are diminishing the most very basic point of this all. At the very least, if a person participating in DBT chose it voluntarily, then surely THEY know that. If, knowing that, they still choose to reach out to a peer supporter and ask them to advocate or help with something that clinicians may seen as ‘interfering,’ they do so also knowing that. Are you suggesting that the peer supporter nonetheless treat that person as a child who can’t knowingly decide to act outside of the DBT framework, and that the peer supporter needs to take on that responsibility?

    In my world of peer support, we practice responsibility *to* one another, not for. The system has already done far too much harm being responsible ‘for.’ If a peer supporter has a question (so much of our work is about questions and curiosity), then they can *ask* the person with whom they’re connecting. After all, this is all so much more about understanding THAT person’s worldview and NOT someone else’s (and certainly not Marsha Linehan’s). I reject this idea entirely, and continue to assert that such beliefs will contribute to further destruction of whatever good and potential may be left. So, yes, ‘clinical, I do think so.’

    You go on to offer that, “Ms. Davidow’s comments on the Code of Ethics are her opinion… They are the same as the majority of codes of ethical behavior that any certified professionals agree to.”

    Well, okay, but this isn’t the “majority” of work. It’s an employment structure for people who have faced silencing and discrimination. It’s already been severely co-opted and misunderstood. While I don’t agree with everyone here who says its pointless altogether, I do seriously question whether there’s any way to have it exist and hold it on track as anything else than what people here accuse it of being. Peer support is also already something that people like Tim Murphy, Susan Inman, Elinore McCance-Katz, E Fuller Torrey, and DJ Jaffe have sought to control or destroy. The language of not practicing beyond one’s expertise is precisely what was put into the Murphy Bill in an effort to control peer roles in really limiting ways.

    Saying this is all ‘just the same’ as any other license is just silliness as far as I can tell. Don’t you at least think the level of potential for discrimination is worth considering before people start signing off on this thing? Has it not occurred to you that various Anosognosia disciples might lodge complaints simply to push these issues? Are you ignoring national news of the Murphy Bill passing under the 21st Century Cures Act or McCance-Katz making her way into SAMHSA with destroying peer support on her mind? Might you not be handing them just the tools they need?

    I just recently received an e-mail from someone wishing we’d get ‘shut down’ simply for hosting a Coming Off Psych Drugs event. You seem to be very naïve about the potential dangers here, and that is terrifying given you are constructing a framework in which so many other people may get caught.

    You close with this: “Ms. Davidow is writing this in a blog about Mental Health America, so the clear implication is that MHA is shrouding itself in “so-called peers” and “party liners.” The comments about not being able to see through their own medicated haze and tokenism are even more revolting.”

    Are you denying that organizations across the country are hiring up “party liners” and people who haven’t made their way out from under the weight of over prescriptions and other varieties of disabling treatments enough to think about their role? If you’re truly suggesting that’s not a thing, then you’re not paying any attention at all. None of that is meant to disparage the people working in peer support who get caught up in that trend, as it’s usually not really their fault. But, to ignore the phenomenon is just as dangerous as everything else you suggest.

    But you seem really wed to ignoring all this. For example, when you say “The individual who “confessed” to feeling beholden to their employer was not referring to us since they are not an employee of our office,” you’re missing the point entirely. Is it intentional?

    It doesn’t matter if they were talking about Mental Health America when they told me how silenced they felt at times. They were saying it in regard to a presentation they were offering, and in general. They were explaining how they felt that – whenever they acted in a professional capacity relating to their role in any way – they felt they needed to watch what they say, and tow at least some part of the party line. Your unwillingness to understand how that connects to MHA’s work is baffling to me.

    Patrick, this national certification is not a good thing. (And neither, I suspect, is Canada’s, though I know much less about it.) None of this is news to you. People have spoken up at your presentation at iNaps, at Alternatives, and more. Your blog really doesn’t present a convincing argument otherwise. I hope you’ll consider this further, but it seems clear you won’t.

  • Hi Patrick,

    I don’t have time to respond to this right now (but, boy is there a lot to respond to)! However, I just wanted to say thank you! I’ve been cited in blogs and articles before, and even been the focus of an article outside of the Mad in America world.. But this is totally my first Sera-focused Mad in America blog written by another party. 🙂 It’s kind of like when I got my first ever hate mail following a letter to the editor that got published in the New York Times. Pretty exciting stuff.

    I look forward to having the time to respond.

    -Sera

  • Eh, I see you are poking at another argument underneath your main points here, oldhead. I don’t disagree with much of what you say – that he is recklessly exposing what others don’t want to have seen.. .But much of this is also about him, specifically.

  • Thanks, Fiachra. Neither one is my gig, but I hear ya… The discrimination they put out there and the assumptions inherent in it are obnoxious! Not only is there that statement, but they ask you in your application form about your psychiatric history.

  • Hi CatNight, Very true indeed. I almost included some of that history in the blog, but decided not to go off on another thread… However, it’s nonetheless a valid point. This is not the first time we’ve had a president who is potentially ‘diagnosable’, but that means little for each president and certainly nothing for them as a group compared to one another.

  • Thanks, Eric. 🙂 You bring up an important point that I’ve also argued at times… Not only is there a low prevalence of violence among people with psych diagnoses, but the fact that someone who commits violence has a psych diagnosis does not necessarily mean there’s a causal relationship. Far fewer people recognize the latter, than the former. And, of course, when we *do* start to look at what qualities and characteristics are most common in people who commit violence, it points us in another direction entirely…

    -Sera

  • Thanks, littleturtle. I agree, looking at the bigger picture and how we got here/where on earth we’re headed is much more important… and much more productive than the same old routine of putting the weight of the blame on those who are already marginalized.

  • Thanks, Stephen. I’ve heard the comparison to Hitler before, certainly, and the first part of it seems apt (in terms of people thinking the idea that he’d end up in office is absurd and thus nothing to worry about, etc.). Hoping that’s as far as it goes!!

  • Thanks for your thoughts, Anonymous!

    This is an interesting and good point: In some respects, I hope they do succeed with getting the president with a diagnosis. I would love to see a congressional hearing on it for all the world to see. How annoyed do you think he might become then? Can you see his lawyers pick apart the basis for psychiatry and diagnosis?

    However, the likelihood of that success is super low, and the likelihood of harm done (or at least perpetuated) is high (and already happening).

    In some ways, this article is a bit of an experiment. I’ve intentionally NOT challenged the basic psychiatric paradigm (though I’ve equally as intentionally not supported it), because I’m not sure it’s necessary (and in fact may be detrimental) to use that as a starting point with people in the liberal/progressive camp. It’s such a leap from where they sit now, but trying to win understanding by focusing more on the basic human rights violations and injustices is less of a leap…

    Perhaps, if the conversation starts there, rather than with something that is SUCH a leap for people to take, they might listen a bit more… And then, if they do, they might be more open to the next push..

    We’ll see. 🙂

    -Sera

  • Hi BigPicture,

    Thanks for your lengthy and eloquent response. 🙂 I certainly want to believe by ‘doing’, we are leading the way to something different, and in many ways, we see the evidence that we are… And yet, it is all so easily co-opted and then the ‘doing’ can also lead us astray.

    -Sera

  • epthe,

    The Hearing Voices movement definitely isn’t about telling people that it’s safe to come out about hearing voices! It’s definitely understood that that’s a risk for a lot of people. And, at the same time, when people are willing to come out, hopefully they make it a little safer for others to be able to do the same eventually. Totally respect your position, though. 🙂

    -Sera

  • JanCarol,

    Thanks for your comment! Yeah, I’ve noticed more and more the weird little recommendation buttons popping up in my chatboxes on Facebook… or ads that correspond to some element of what I’m saying! :p It is disconcerting to say the least… Though in fairness to Joy, what I’ve seen in her responses suggests a total lack of attention, rather than too much. But, I hear you and your fears on this count seem totally valid to me!

    -Sera

  • John, I do see you last comment got removed for moderation! I can’t quite remember what it said. :p Joy does seem fair game, though, all things considered… Someone recently e-mailed me to let me know there’s a new bot on the Facebook scene called ‘Woebot’, too…

    That one is… I don’t know. Different. It gets around Joy’s biggest issues by simply providing pre-determined bubbles one can choose for response. :p

  • Thanks, Stephen. I agree he doesn’t have too much understanding at all… Precisely what I meant to convey with these lines:

    “This isn’t your world. You don’t belong here, at least not without some humility and a guide.”

    “Joy basically is Danny. All his good intentions, hopes and dreams, naivete, ignorance, arrogance, and blind spots are there in equal measure.”

    I wish he’d recognize that.

    -Sera

  • Hi Bradford,

    Actually, just for your reference (and anyone else’s), if you go to ‘About’ in the Mad in America drop down menus, and then go to ‘Contact Us’, there’s a drop down menu from which you can choose any Mad in America employee or author and send an e-mail.

    People have definitely contacted me that way! I also don’t mind giving people my e-mail, but I’m reluctant to post it here for spam purposes.

    I’ll also be upfront that while I do my best to respond to all e-mails I do sometimes read something and then lose track of it, if I can’t respond right away, and so sometimes it may require people to ‘nudge’ me to bring me back around…

    I heard someone else talking about that film, but I at least *thought* they responded more positively to it.. I don’t know much about it myself at all.

    In any case, I’m realllly overwhelmed in work life right now, and am headed out of town for three weeks mid-summer, but I’m willing to give it a go, if you think I can somehow be useful up there!

    -Sera

  • Matt,

    Yes, it does seem invisible to many who are on the inside of it! I think even of commenters here who are simultaneously challenging the validity of this article’s claims, while unknowingly pointing out some of the fundamental pieces of exactly what the article says makes the whole system tick along. It does all end up feeling a bit like asking the organization to change is like asking a human being to learn to not only live but prosper without food…

    Anyway, thanks for reading and commenting!

    -Sera

  • Thanks, messenger48! I tried submitting one article to Counterpunch, and didn’t get through. (I think the first time is always the hardest!) I’ll have to try more. I’m certainly interested in reaching a broader audience. 🙂 Thank you for the reminder to give it a go.

    -Sera

  • Hi epthe,

    Thanks so much for sharing some of your experience. The involuntary outpatient commitment stuff is *so* short-sighted… So limited. So harmful. I’m glad you had the support you needed to find a way out… I wish more people have access to what you did to help push for more options!

    -Sera

  • Thanks, CCHR. Unfortunately, I worry your posting here under that name and promoting that website will suggest to people that this article is somehow related to Scientology, given that CCHR does seem to be linked. I do, at least, want to be clear that what I’ve shared here in this article is actually independent of any CCHR research, and includes sources like Mother Jones, New York Times, and even some very conservative sources like Pete Earley and DJ Jaffe. I don’t mean to suggest, either, that CCHR doesn’t include some valid and independently findable research, as well… But I do worry about the motives that are at the roots.

  • Michael,

    Unfortunately, part of NAMI’s gig is to suck up all the air so no other ‘gas station’ is able to grow. It’s not as if they just benignly offer supports that people can take or leave… They are a part of a machine that conveys *one* way of thinking about such distress (intertwined with capitalistic interests), that lobbies for force and money to be taken *away* from alternatives and put into more ‘clinical treatments’ (that’s, after all, part of what the Murphy Bill aims to do…), etc. etc. etc.

    -S

  • Thanks, Catnight, for all your thoughts.

    You mentioned a church you thought was progressive… I think one of the things we’re up against, is that people who are generally ‘progressive’ see ‘reducing stigma’ and increasing ‘treatment accessibility’ *as* the progressive things to do, without ever really stopping to understand that all the ideas that underlie those things are decidedly *not* progressive at all. It’s a huge part of the struggle.

    Sometimes theater pieces help, and there’s been the occasional good media piece (this for example! http://thesunmagazine.org/issues/496/an-open-mind), but *so much* that is geared toward making people think is just going out to the same audience as always.. So, part of the challenge is not just how to construct those pieces, but to find a way to expose people beyond our own bubble to them and *then* have those dialogues. Such a complex web to sort out…

    -Sera

  • Carrieb, I am definitely no expert when it comes to search optimization, but I’d like to become one… I think it’d be good for our community to learn far more about that. As far as Mad in America goes, in the background they are paying attention to ‘SEO’ ratings which help articles rank higher… I always make sure my SEO rating is ‘green’ (good to go!) before I submit it for consideration, and I know there are Mad in America staff that will help with that if the author isn’t familiar with the process. And yet, that’s certainly not nearly enough to compete with NAMI just yet!

  • Pat,

    I spent some time trying to figure out what you mean about ‘Split’, since I never actually refer to anyone as a “good boy”…I think you must mean this passage:

    First you have the goodhearted soul loved by all (or at least most), but who inevitably slips up every now and again, falls off their drug regimen and gets at least a tad out of control… Perhaps all in effort to provide a sort of ‘Public Service Announcement’ about just how bad it can get when one is so ‘non-compliant.’

    Maybe not? I’m not sure. I guess, if you mean that passage, I think you may be misinterpreting the point. The point wasn’t to put down people who actually have that experience, which is valid, but to put down the use of that experience as a boiled down stereotype used to scare everyone else into never trying to withdraw from their psychiatric drugs.

    I feel like there are a lot of times when you are misunderstanding what is being said, or reading a lot more into it… Not just here – where admittedly my sarcasm and ‘snark’ are turned on high a lot of the time – but in other settings and with documents and conversations that aren’t mine. I think you have a lot to offer from both your own experiences and your work, but I’m left wondering why there’s such a barrier to simply understanding what’s being said…

  • Steve,

    Fair enough. This whole science conversation is an interesting one… How easy it is to discredit actual science as anti-science when it simply doesn’t fit with the power structures and dominant beliefs…And how hard it is to get people to listen to the *actual* holes in the ‘science’ that supports them.

    Sera

  • Thanks, Truth. I don’t blame you for wanting to make change from within, and if it were merely a matter of opening people’s eyes to different information (rather than getting powerful entities to give up a lot of power), I might be more hopeful about it. I hope your alternative efforts are successful!

    Sera

  • Steve,

    I agree with your comment.. .AND, I would add a point which I also tried to make in this blog (as well as – perhaps more strongly – in my Autism Speaks blog): While local chapters may sometimes be miles better than the national NAMI, at least part of what that accomplishes is to give national NAMI an opportunity to say ‘see, we’re not so bad!’ and distract people from a very serious problem. In other words, it’s great when local NAMIs are better… great for those local people… but still, in some ways, potentially harmful to the bigger picture.

  • Hi BillDare,

    Thanks for reading and for your comment. Yes, there’s lots of articles and fear circulating with Elinore, with the potential new appointments to the NAMI national board, and with so much else. Not too sure where it means we’re headed, or what conversations we might be having in a year, or two, or five as a result…

    -Sera

  • Hi Christopherj,

    I really appreciate your sharing your experience! What you say makes a lot of sense… about individuals verses groups. It’s frightening in its way, but if we look at history (of all sorts of things, not just NAMI), it makes all the sense in the world.

    -Sera

  • Michael,

    NAMI has never pushed drugs? Hmmm… Aren’t they essentially doing that by pushing the Murphy Bill and Involuntary Outpatient Commitment?

    They have also pushed ideas like that psych diagnoses are unquestionably brain diseases, chemical imbalances, and/or ‘just like diabetes’…

    And, if you disagree, well, they’ve got that great little ‘anosognosia’ section on their website..

    These are all pushing drugs in one way or another… In fact, they’re much more effective ways of pushing drugs, then if they literally pushed drugs in the ways you seem to be imagining we mean…

    -Sera

  • Hi Michael,

    So, I can appreciate you have felt helped by NAMI, and won’t attempt to take that away from you. However, when you say this:

    “aside from helping me come to terms with an illness and encouraging that I listen to recommendations by a psychiatrist, NAMI has done nothing to sell me or feed me drug information.”

    I say THAT is exactly what I – and the pharmaceutical rep I quoted above – am talking about. NAMI *does* engage in overall advocate and lobbying that help drug companies directly, but more notably they push people into the paradigm that *leads* them to take the drugs…

    The pharma rep’s point above was exactly that. That direct pushes toward specific drugs are NOT the most helpful approach. But that the more indirect approach of just convincing people they *need* drugs via advocacy to regard one’s self in a particular way… that’s proven quite effective.

    So, I’m not surprised what you say… in fact, it fits well within what I’d expect.

  • Thanks for your post and thoughts. 🙂 I fear that we have a longgggg way to go before we can really say that it’s mainly just the politicians/1% that are pushing in the psych drug direction…. BUT I do think there’s nonetheless validity in what you say, and we should definitely be paying attention. It makes sense that it would be that way when we think of the ways in which systemic oppression works.

  • Steve,

    Yes, I think you’re on track and are understanding what I’m getting at very well. I *would* ditch the world ‘client’ (as you seemed to realize during your post) as I’ve seen too many people internalize that they are ‘client’ into their identity and that *alone* can keep them stuck in a system that often isn’t truly helping them. But the rest of what you say is great.

    Kurt, I don’t think anyone here (myself included) are trying to say that you are ‘bad’, but I am saying that you haven’t hit the mark yet… You and co-workers may be miles better than the average clinician who hasn’t considered some of the things you have… But you *and* your co-workers and students still seem to be missing a huge piece of the puzzle.

    If, as you indicate below and Steve says above, you’re only here because you care about Bob’s work and the problems with the pharma industry, you’re missing how deep some of the system’s problems run. I don’t mean the occasional time when it got so big that you were able to see it again (as you’ve named a few exceptional examples above), but when it just stayed at that sort of day-to-day level of bad and power-ridden and oppressive so that it was mostly invisible to those who weren’t looking for it.

    This is the nature of most systemic oppression. The big and obvious examples are able to seen by *most*. But the system actually runs on the more insidious, harder to see stuff… Harder to see because you’re on the power end of it, and so it just looks like business as usual to you. And by you, I don’t mean *you*, but really anyone who is living on the privilege end of the stick (so, also you).

    It’s the *same* phenomenon that means the average white person *can* easily see the really egregious examples of racism, but has a much harder time pulling out the conditions or microagressions that are truly what sets up the environment for those bigger things to happen… Same with sexism… and homophobia… and all of it.

    I hope you’ll spend some more time trying to see.

    -Sera

  • Yes, I misapplied *one* statement (about people being ultimately happy to be in hospital). Everything else has been a response to you. Nothing I said in my last comment – and only one bit of my first comment – had anything to do with what I misapplied.

    Kurt, You’ve come here to this site for the first time… a site full of people who’ve lived these things (though that’s certainly not representative of all bloggers here or the site’s full point), but you don’t seem to have a lot of respect for that. Or, at least, that’s how you come across to me.

    No, I don’t know who you are. But, I do know that what you’re conveying – as I believe someone else said – comes across as feeling tone deaf to me. You’re talking about what you believe to work in the world of ‘suicide prevention’ (a problematic concept at its very roots), but you are speaking in some of the least human-sounding language about what is the most human of matters: life and death.

    I don’t think you can fully see it, which is why I brought up privilege. I hope something makes it all more visible to you at some point.

    Sera

  • Okay. I was trying to be reasonably polite. This might be somewhat less so.

    Your response – and much of your blog – comes across as pretty pretentious and … well, I’ll leave it at that.

    In fairness to you, I did mix up some of my notes and was attributing some of what Dickson said above to you…So, apologies for that much.

    However, the rest is for you. Your overly academic way of speaking, assumptions about what people (including myself) do and don’t know, and globalized way of speaking about *all* of your students and virtually *all* of your co-workers as somehow different and more special than almost every other clinical worker in the country is extremely off putting.

    And sure, you can’t vouch for an entire website of tools… The problem is, if you’re going to blindly direct people to such a thing, you might want to offer *some* information about just how much drek they might have to sort through. It’s not just that some will work better culturally for some groups than others, and vice versa. Some of it is actually dangerous. Some of it is primarily a marketing tool to get kids into ‘treatment’.

    It’s interesting that you defaulted to your whiteness and maleness when referencing my comment about privilege. It is true, you are privileged in that way, and I share the privilege of whiteness with you. However, what I was specifically referring to is your privilege of power in your role. You’ve never been – at least as far as I can tell – on the opposite end of the ‘suicide prevention’ stick. I have. Almost everyone I work with has. The privilege of not having ever been there – and not living on that cusp now – is big, and I do not think that you recognize it.

    You’re all theory and acronyms. I’m familiar with CAMS (and if I wasn’t, I luckily say through the aforementioned extraordinarily painful and offensive suicide training on Tuesday where it was reviewed). I’m also familiar with the BS that is ‘Zero Suicide’, I’m intensively trained in DBT by Charlie Swenson and Cindy Sanderson. Blah blah blah. I *know* what you’re talking about.

    And I disagree with most of it.

  • Kurt,

    I have admittedly only read through your blog and then skimmed the comments, so I may be missing something already said in the subsequent dialogue, but I would like to point out that you have linked to a ‘suicide prevention’ resource that promotes products that are – in some cases – pharmaceutically funded. For example, it includes the SOS program about which I wrote a blog (https://www.madinamerica.com/2016/01/middle-school-invasion-when-the-pharmaceutical-companies-come-to-town/) when they tried to peddle it to my son at his middle school.

    While I understand what you’re getting at with some of what you write, I found myself reacting with concern to a number of points. For example, this emphasis on restriction of means… It reminds me of a suicide and self-injury training I attended earlier this week.. One (of many of) the most disturbing moments was when the trainer said that – after a particular suicide – he restricted anyone receiving services at the org where he worked from living in an apartment that was any higher than the second floor. Great. (Not really.)

    I’m also having trouble getting past your statements about people basically being happy to be locked up and become powerless… I mean, sure, some people experience an *element* of that, but if that’s your main takeaway on most occasions, I fear for what you’re missing.

    On the whole, I hope you realize that when you live the privilege of as much power as you hold, it’s almost *inevitable* that you’ll be missing several elements of what it is like to live on the other side of that power split. I hope you’ll hold that in mind and consider it deeply as you move forward.

    Sera

  • Steve, I appreciate your comments here. I really don’t see autistic people telling other autistic people that they *must* be happy to be autistic, or that points of struggle that may somehow be connected to being autistic aren’t actually struggles… Same for people with various psychiatric diagnoses.

    What I *DO* see is people with those experiences saying ‘let me decide for myself what is ‘struggle’ and why, and stop trying to speak for me, or force your ideas on me based on your perspectives’…

    -Sera

  • Strandra,

    If you haven’t heard people say ‘I want it back’ or, more commonly, ‘I wouldn’t want to lose it’ in regards to some of the experiences that have led to their psychiatric diagnoses, than you surely haven’t been listening. I have heard *lots* of people say they wouldn’t want to lose their voices, especially once they’ve learned to navigate them. I’ve heard many people say they appreciate the benefits their various sensitivities bring, especially once they’ve learned to balance them and navigate the world. And so on and so forth

    As to polio and who was or wasn’t ‘born this way’… Many people certainly do have the experiencing of having been born autistic, or neruodivergent and coming to appreciate many of the benefits that have come with that for them.

    Your excuse that many people who are autistic have difficulty with communicate is immediately belied by hundreds of thousands of autistic voices, several of which are found in the links I have included in this blog. Sure, there are people who would choose otherwise… Many of us would choose something different than what we have, the intensity and variances of our why or why nots are based on many different variables. I’d not take away from someone their desire to be different… but you’re ignoring and discounting MANY people with your extremely simplistic response.

    Perhaps even more importantly, whether or not you think of autism as an example of born neurodiversity, there are many points in this blog that hold either way. And there are many voices that I include that you might benefit from hearing.

    -Sera

  • John,

    Sami is great. I’ve met and interviewed him for a film I’m working on.

    However, I don’t feel like it’s my place to argue against such a diagnosis, when people who are quite empowered and educated about their experiences say otherwise.

    What’s clear to me is that the approach of Autism Speaks and NAMI are abusive and damaging, and that can certainly drive a diagnostic process that is dehumanizing (such as the one that led to my own pscyh diagnoses, which I’ve since discarded). And, I’ve certainly heard from people who’ve been given autistic diagnoses that oppose or feel harmed by them.

    But, I don’t think it’s necessary to buy into a ‘autism diagnoses’ are inherently bad or wrong framework in order to see that was Autism Speaks has to offer is terrible!

    -Sera

  • Hmmm… Looking at the 990s for the overall orgs is interesting. Have you checked them out?

    Here’s what I find for Autism Speaks on the contributions/grants line:

    (2012) 53,245,999.
    (2013) 63,725,069.
    (2014) 57,552,851.
    (2015) 58,085,859.

    Unfortunately, that shows an overall upward trend, albeit gradual/small.

    For NAMI, I find:

    (2012) 8,375,875
    (2013) 8,605,802
    (2014) 11,226,125
    (2015) 7,934,069

    So, they each have a bump year where things were substantially higher and that seems not particularly reflective of the overall trend… NAMI seems less clearly going up, but not exactly consistently headed down either…

    And *holy crap*, I didn’t realize that Autism Speaks was that much bigger than NAMI overall.

    Interesting stuff.

  • The_Cat,

    I don’t know if there’s an easy way to truly measure that… When I personally just googled ‘NAMI criticisms’ two of the articles that popped up on the very first page were:

    https://www.cchrint.org/2009/12/15/nami-is-on-the-defensive/

    https://www.madinamerica.com/2013/07/nami-and-robert-whitaker/

    I myself have also written about NAMI on more than one occasion:

    https://www.madinamerica.com/2014/03/dear-nami-apologies-ive-unfair/

    https://www.madinamerica.com/2015/09/do-nami-and-mha-suffer-from-anosognosia/

    (Though I’m certainly not making the front page of any google searches)…

    And while I wouldn’t choose to promote anything from CCHR (being the Scientology front group that they are), all four of the above links note the NAMI/Pharma link.

    And, as I said at the top, I’m just not sure how to measure the success in fighting back. It doesn’t seem we’re too successful as of yet on either front. Hoping we can change that somehow!

    -Sera

  • Thanks, Feelingdiscoruaged.

    I should clarify that the woman’s org analogy was from an autistic blogger who goes by codeman38.

    I intentionally quoted and referenced a number of autistic people here, because I did not want to be just another non-autistic person speaking about autistic experiences, without actually including those voices. Though I recognize the risk in doing so under my name is still that their words could be attributed to me, so I want to be careful about clarifying that when I can, too.

    I really appreciate this point: “Normal people are allowed to be assertive, independent and have good self esteem. For the “mentally ill” these are no no’s.”

    I’m glad it feels like your voice and awareness are coming back.

    -Sera

  • Pat,

    I’m not sure I’m totally following what you mean? I love to write and stir things up, but as you know, I also work in a world where many of us are out there doing the work in person, too.

    I really don’t think there’s agreement on this national certification business, including that it needed to exist at all. Thus, I don’t know that the answer is to simply offer MHA some competition.

    -Sera

  • Julie, I hear you. I think the only challenge with *no* training if we’re going to do this whole ‘peer’ thing is that *so* many people go through some of those life experiences and come out the other end all full of internalized oppression. I have to admit that I do find *some* training helpful on top of all that personal life experience to help work through some of that, think through what it really means to ‘be’ with people, be curious, support, etc. But overall, I appreciate your post a lot. 🙂

  • Stephen,

    If I had more time on my hands, I’d be fascinated to do some research that involves not only comparing licensure requirements between these various professions and the peer role, but *also* the logistics involved in meeting those requirements as they differ for each, *AND* how they’re applied… For example, I imagine a requirement that one put their licensure on ‘hold’ as a dentist is *likely* to bear many fewer actual risks and lower likelihood of abuse than for a peer role. Oy. What a mess.

    -Sera

  • Frank,

    Overall, I agree with you the idea that everyone who goes into the system should come out as its employee. However, there are many people for him that has been a really important path. Many of my co-workers have seen the depths of the system, and now get much satisfaction out of fighting against it in the way that they do. Of course, most of them also work with the RLC which is much less direct than working for a traditional provider. Working in a traditional provider in a peer role is a terribly hard position to sustain and not lose sight of one’s self again.

  • Hi The_cat. Comparing some of what happens in this world with Munchausen Syndrome is interesting… There does seem to be a bit of a common element in terms of somehow getting emotional gratification via public attention associated with one’s child’s struggles… Although, I’d stop short of the idea that most of these parents don’t also really care about their kids and wouldn’t find it much more important for their kids to be in a happier, better place.

    Thank you for the story! I look forward to checking it out.

  • Laysha,

    It is a really good question, and not one to which I have the answer. Of course, my fantasy is that articles like this one and word of mouth will prevent so any people from taking the damn thing – or organizations from being willing to pay for it – that it will fall apart for lack of funding. Unfortunately, that seems unlikely, but it won’t keep me from trying!!

    Do you have any other suggestions?

    -Sera