So. This thread, on Feministe. Jill linked to an article about Mad Pride and the Icarus project, and the comment thread got a little firey. Mad Pride itself was of course questioned, and the comment thread devolved into an argument about mental patient autonomy, the right to avoid medication, and when it is "right" to override patient autonomy and mandate medication. A fair few non-neurotypical people and people with mental illness objected to the direction the thread was taking, and Jill stepped in and shut it down. Before I got there, obviously.
Natalia addressed the thread here. Some interesting thoughts were also presented here, at Directionless Bones.
I'm about to post some thoughts that came to me in the aftermath of reading that original post, but there's a need here for some history and full disclosure.
I was involved in a Sydney branch of the Icarus Project for quite some time. We ran it out of a little local queer space that, sadly, has ceased to exist in its original and beloved form. It was loosely organised... we'd have meetings and group discussion sessions when enough people were keen and capable of attending, and throw the occasional Mad Hatter's Tea Party or Mad Pride event to keep things positive if people had the spoons to co-ordinate such things. We didn't borrow much from the original Icarus group, but included some of their zines and publications in our resources. We didn't pretend to offer treatment or serious support, just a group of sympathetic people being there to listen to each other about our various lows, and willing to accept and embrace the positives and the pride.
It was, quite simply, amazing. A great group of people, and a valuable environment to have.
It died a natural death: a few people moved away, a few people got more sick and couldn't attend, or more well and didn't feel they needed to. The process was sped along slightly by some clashes between Icarus people in crisis and other users of the space. I still contributed to the blog and ran the occasional Mad Hatter's Tea Party without the intervening group discussions or meetings.
Mad Pride is still a big part of my life. I'm a lot more out about my non-neurotypicality than is probably wise in a psychophobic society that places so much emphasis on neurotypicality and arbitrary definitions of "sanity". But I had to firmly and decisively sever any connections I had to the Icarus Project a while back. Quite simply, they stepped up their position from being anti-enforced-medication to being anti-medication altogether. When a publication from Icarus arrived that not only encouraged people to stop taking their antipsychotics, but offered advice on how to do so without medical supervision or support, I knew it was time for me to have nothing more to do with them. That goes beyond embracing mental difference and Mad Pride, and lands squarely in Just Fucking Dangerous territory. And that's not something I could support.
That's me and Icarus.
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27 comments:
Thank you so much for posting this. I don't follow Feministe that closely, so I had no idea about any of this stuff. I'm familiar with the anti-psychiatry movement, but there's nothing in the US quite similar, at least last time I checked.
I recently wrote about my experiences being committed at my blog. And I've just been thinking through these issues a lot lately, so you've given me a lot to read and think about.
On a related note, speaking of arbitrary definitions of sanity, have you ever read the book The Myth of Sanity?
Thanks for commenting. I shall have to read your posts about being committed!
I don't think I've read that one, no.
I have had to take myself off meds (with some very nasty withdrawals) several times without supervision, for several different reasons, like doctors refusing to take me off meds without putting me on other meds when I wanted off completely, at times, and at other times lack of access combined with running out. Also taking myself off meds post-hospital after basically having to take them if I wanted to be released. A harm reduction guide for how to do it more safely and lessening withdrawals would have been very helpful.
sixtoedkitty: That was WEIRD. Your comment disappeared for a bit. I was worried I might have bahleeted it.
I have had to take myself off meds (with some very nasty withdrawals) several times without supervision, I've had to do it too. It's really not fun.
A harm reduction guide for how to do it more safely and lessening withdrawals would have been very helpful.I would find such a publication useful, too. I've been involved in harm minimisation projects from the age of fifteen to the present day, and consider it a vital area of service provision.
This is not what I received. Harm minimisation literature does not start by trying to convince the reader that their medication is bad for them and they shouldn't be taking it.
A harm minimisation guide is the kind of thing I would have expected to come from Icarus when I first came across the group. I'm bitterly disappointed that they've gone down the path they have.
It also puts a fucked up value judgment on people who use meds.
Absolutely. We're Doin It Rong.
Ok, bad assumption then, I assumes what you got was their harm reduction guide that they have. Which I haven't known about very long, heard about it from a really good friend of mine who used to be really involved in the Icarus Project here in NYC.
I've got that one too, it's an earlier publication. I still found aspects of it extremely troubling, including but not limited to the fact that it contains some really anti-medication sentiment that was clearly built upon in later years, and that some of the information presented in it as fact is blatantly false.
Hm, if there is more than one I guess I am assuming that is the one she meant. She did not give to me directly, just recommended that if I needed it (a harm reduction guide for getting off meds) might look into it. She actually recommended it (or some version of a harm reduction guide they did, if there are multiple ones) when I was in the hospital this fall and she was visiting. But then the meds I was on at that point turned out to be relatively easy for me to get off myself, and I didn't try to use the guide or seek it out. But when I was getting myself off some of the drugs with nastier withdrawals than those, I could have used something. For sure. If I'd had serious need of it this fall probably would have asked her for specific recommendation...
I guess another thing is...ok, I would never say someone is wrong for making their own informed unpressured decision about wanting to be on medication. But given all the pressure out there to be on meds, societal pressure sure but worse than that, doctors and hospitals who have different amounts of power over you, I like that there is this group out there to help people resist it, if and when they/we need to.
You probably could have done without the misinformation, though. The information given in the few pages of that guide that are actually harm minimisation techniques are good advice, but they don't need the rubbish. I'd also suggest that people who are clearly not following current psychiatric research and theory even a little bit should avoid preaching on what the current theories on mental illness are and how much they're a pile of crap.
Putting that aside...
I'm glad you managed to get off your medication yourself, if that's what was best for you. I do think it's absolute rubbish that doctors won't provide harm minimisation advice, or in many cases allow patients to make the decision to remain unmedicated. it's one of the things I was thinking of when I made the post after this one.
It was the month of September (the hospital and therefore the recommendation). Or late August through most of September...?
I guess that doesn't really matter.
Hexy, yes, doctors have told me more than once that they will not (or "would not feel comfortable" which they then make clear is equivalent to "will not") taking me off my meds without putting me on other meds. I think that is a step beyond/worse than not providing harm minimization advice. But I agree they should do that too, especially to plan for situations when you might run out and not have access again.
As I've said repeatedly, I am very much in favour of Mad Pride, of patient autonomy, and of people with mental illness having the right to not take medication and to be supported in that.
I am not at all in favour of attempting to pressure people to not take or to stop taking their medication, or of lying to them about that medication or their prognosis to convince them to stop taking the meds. Icarus the way it was when I found it did the former, and promoted destigmatisation as a primary goal. These days, they seem much more about the latter.
And regarding your last comment, boo to those doctors >:(
By informed etc., I would say that of you, you seem very informed and it seems like meds are best for you. I very much resent the pressure I have been under from the very beginning from doctors, is the thing, they were never the right choice for me and if I had known more and been able to stand up to the doctors from the beginning, I would never have been on them at all, except maybe in hospital to get released, and I would have been much better off for it, and not gone through any of that. I very much resent psychiatrists (and hospitals) for all of it. You know???
I do, and I'm sorry your experience has been so negative. I don't blame you for being resentful, although I think it's a shame that that resentment (or more accurately, the shitty experiences that caused it) may well prevent you from finding access to a decent pshrink or counsellor who would respect your decision to avoid medication and listen to your feedback when helping you decide on the best treatment options. I see a lot of parallels between what you're saying and the stories told by people who have experienced fatphobia from doctors and healthcare providers.
I was lucky enough to have a supportive doctor who listened to me when I said I wanted to come off my mood stabiliser, and who supported me in the adjustment period instead of just taking the easy route and insisting I get back on the drug. I also know quite a lot of people with depression or bipolar disorder who manage their conditions without medication, with or without the support of a range of mental health professionals. All of these options should be available to us, and openly so! More patient knowledge for all!
Thanks Hexy...I mean this discussion definitely got started based on a misunderstanding/bad assumption on my part, that it was simply a harm reduction guide, I'm not in favor of lying to people either. I am really not familiar enough with things (I didn't really even read that whole guide, just remembered my friend's advice and the harm reduction guide, figured it was accurate and the same guide, did read some of it tho) to have an opinion on whether that is what they are doing...I trust that you know what you are talking about but I also trust my friend to be knowledgeable and informed so I would have to look into it more.
It is not usually my style to get into discussions/arguments so uninformed but something in this struck with me a little...I don't know.
I'm not in favor of pressuring people directly not to take meds def, but am in favor of countering the doctor, hospital, and societal pressures.
Meh, I don't think I do manage my mental illnesses or whatever (non-neurotypicalities?) very well but medication does not help, never has. Therapy doesn't particularly either. But that's enough about that. Whatever.
And some specific therapies/day programs are bullshit/brainwashing, and very superficial. And don't even address everything anyway, like oh actual symptoms of mental illness rather than superficial things. I used to think there might be something to those but have learned otherwise.
"Talk" therapy has not only mostly been useless, it is usually sliding scale rather than taking medicaid which is way too expensive even at the bottom of the scale. Actually there was one woman I liked and who didn't deal with meds at all, who might have turned out to do something for me, but it didn't work out for other reasons, including the sliding scale bit.
I am glad that you had a supportive doctor for the mood stabilizer. :) And agreed more patient knowledge for all!!!
I'm not in favor of pressuring people directly not to take meds def, but am in favor of countering the doctor, hospital, and societal pressures.
Absolutely with you on that one.
Meh, I don't think I do manage my mental illnesses or whatever (non-neurotypicalities?) very well but medication does not help, never has. Therapy doesn't particularly either. But that's enough about that. Whatever.
The best advice I was ever given on this front was this: Remember that every coping mechanism you have used up til now to cope with the stuff in your brain has been the exact right thing to do, because you are still here and you are still coping. :)
And some specific therapies/day programs are bullshit/brainwashing, and very superficial.
Absolutely. With mental health, it really is a case of shopping around until you find a pshrink/doctor/therapist/whatever that suits YOU. My pshrink is brilliant for me, but a friend saw him and found him too medication focussed for her. Unfortunately, shopping around and educating yourself on the options simply isn't something everyone can do, or knows to do.
Yeah, ok, sorry, I am doing the virtual equivalent of talking your ear off...but definitely thank you for your thought provoking posts, I did mean to tell you that I did read and enjoy the post above this on meds and autonomy. :) Best to you.
No problem at all, thanks for engaging :)
You mean my ex-boyfriend Will Hall's harm reduction guide to coming off psych meds? It didn't *advocate* coming off, it just told you how you could safely and very slowly do soif you were sick of the side effects and felt you could treat your emotional extremes with natural alternatives (which many people have done successfully.)
Here's my icarus contribution (I'm a bigger part of the sister org, the freedom center--www.freedom-center.org--also headed by my ex, Will Hall--*sigh*--being exes with him and Melissa Gira Grant really make one feel like an inadequate activist ;) )
http://theicarusproject.net/articles/catys-story
marginalutility: It really did. The actual harm reduction action was outweighed by many, many pages of anti-medication advocacy. And ya know, I'd be fine with that if the publication was at least honest about the author's intentions and views.
Did you read the post? I did mention that I noticed a gradual but constant shift to an anti-medication sentiment, and I certainly was not alone in noticing that.
And I'm well aware that many people manage their various illnesses/examples of non-neurotypicality without psychiatric medication. I have nothing but respect for the people I have encountered who have succeeded at that, and I certainly feel that doctors and mental health professionals should support people in non-medication-based treatment whilst not expecting to remain the sole pillar of support to the person in question.
I think I've read that piece of yours before. Thanks for stopping by.
wow this is some good stuff. you have a great mind.
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