Hi Paul,
Thanks for describing your view in more detail. I appreciate your ideas and dedication to a worthy pursuit. I also read the article about Basaglia, which was very interesting.
However, I still canât understand the Buchenwald vs. Auschwitz comparison. While I completely agree the abuse and mistreatment of people in mental institutions was and still is a massive, horrific and largely-overlooked part of history, I believe that comparisons to the Holocaust, are, for lack of a better term, âapples to orangesâ comparisons. Auschwitz and Buchenwald were places designed for the sole purpose of extermination of human lives. As someone whose ancestors were murdered in the Holocaust, I think we have to be careful when using past events for comparisonâs sake.
Wow. Maybe I’m not understanding the full context of this discussion, or maybe the above post by Paul was written with a strong sense of irony…but comparing Buchenwald and Auschwitz regarding which one was “better” is deeply, deeply offensive. These are both places designed with the sole purpose of genocidal mass murder on an industrial scale – it is unbelievable to me that ANYONE can make that argument, even in these days of “Alt-Right” and neo-Nazi resurgence. Paul, if I misunderstand this comment, please forgive me; but if not, this is an incredibly disgraceful ‘argument’ to make.
And yes, it’s difficult to see past the devastation that giant institutions like Danvers inflicted on so many – destroyed countless lives, but I see some value in exploring some of the ideals of the “moral treatment” philosophy, which, while contained within a flawed, outdated “institutional” philosophy, were at least offered with a sense of social responsibility. For me, it has been an important part of advocating for a right to fresh air, which I worked on for many years in Massachusetts (the law was passed, but is not being routinely enforced). Anyway, the value of exposure to nature was respected for a time, with positive results.
Thanks so much for this post! As someone who has been following JRC for years, I am continually baffled by the lack of definitive action to stop JRC (on the local, statewide and national fronts), and the fact that the JRC issue tends to be largely ignored in national (and especially local) media. JRC has maintained a small army of high-powered lawyers and lobbyists (including Rudy Guiliani’s lobbying firm); perhaps that’s why the FDA is so afraid to take the action necessary to stop these barbaric practices.
As a ‘for instance,’ here’s some state records on lobbying, showing that JRC spent $120,000 last year for a professional lobbyist…
Search detail for: Judge Rotenberg Educational Center
Registration year: 2017
Address: 240 Turnpike Street Canton, MA, 02021 US / 781-828-2202
Brian S. Hickey Associates, Inc. $120,000.00
Employed Details about your lobbyist or entity’s efforts
01/01/2017 All legislative matters pertaining to the Judge Rotenberg Educational Center.
I agree with Steve. After spending over 10 years trying to have language put into Mass. state law allowing psych inpatients the right to fresh air daily, it baffles me at times when there are splashy stories breathlessly describing the benefits of going outside on mental health. Don’t get me wrong – I’m glad more attention is being paid to it, but sometimes it seems like the fact that going outside is beneficial is really just common sense and not necessarily needing reams of studies to prove that basic fact. (Of course, specific methods on how to increase the positive effects of going outside is worthy of some study).
I’m glad to see that there is some more awareness of the effect of nature out there. Yet, another part of me wonders why this is seen as something new or groundbreaking. Feeling better while in nature is hard-wired into all human consciousness, and it really shouldn’t be seen as a “surprise.”
I’m very passionate about this issue, of course, because I have been working (13 years now), on getting hospitals, clinics, etc. in my home state of Massachusetts to mandate access to the outdoors (something afforded to Supermax prisoners and organic livestock). I am happy and proud that “daily access to fresh air and the outdoors” is now in the books, having been signed into law nearly 2 years ago.
However, this law has been undermined so much, both in the passage of the law, and the promulgation of the Dept. of Mental Health’s (DMH) regulations, that it is basically unenforceable. The original intent of the legislation – to ensure that EVERYONE in a ‘treatment’ setting – has been whittled down.
Before passage of the law, a last-minute amendment restricted access to the outdoors by making it dependent on “client’s clinical condition and safety,” and “the facility’s ability to safely provide such space.” After becoming law, DMH passed regulations with enough loopholes to drive a Mack truck through, and apparently, many hospitals have asked for “waivers” from having to provide fresh air access.
I guess I’m just venting a bit here, but the values (or lack thereof) of inpatient psychiatry do not include basic human dignity and the need to experience nature. The benefits of nature could help so many, but that would depend on creativity, initiative and “outside of the box” thinking that is entirely missing in so much of modern mental health care.
I’m not sure if you are being sarcastic when you refer to Peter Singer glowingly, but he’s no hero to many, advocating for euthanasia of children with disabilities…
Thanks for your interest! Fortunately, JRC’s methods have fallen out of favor. The FDA has proposed an outright ban on skin shock, and it looks likely they will approve the ban – although their decision has been postponed until (perhaps) after the election, which is worrisome. Still, JRC would be able to use ‘aversives’ that don’t use shock – like they did before they developed the “GED” shock machines.
I am still amazed at how long it has taken to stop the place down. As a lifelong MA resident, it boggles my mind to no end that, even though there have been many State, National, and International investigations into JRC, the State of MA has not been able to stop it, and/or have, in many cases, refused to, believing the army of lawyers and lobbyists JRC has at its disposal. Even the current House Speaker here has steadfastly defended them, and a prominent State Rep, whose nephew is held there, has fought for them for years.
JRC uses the PR tactic of having parents tell their stories – usually en masse, using a similar template: They say how much they love their kids, explain in great detail how severely self-injurious they have been, and that JRC has been a godsend for them, etc. When presented like that, it’s remarkably effective.
Also, interesting to note that whereas in the past, most referrals to JRC were for people on the Autism spectrum, more recently, they are taking troubled kids (mostly minority children from NYC). It’s fascinating how blind society can be to things like this – even the Boston Globe has run Op-Eds praising the place. Instilling fear of ‘risk’ can very easily lead to such tyrannical ‘solutions.’
givemeyourking, I know this may be seen as veering a bit off topic, but your comment regarding the ‘Rotenberg Method’ is way off-base in many ways. as someone who has been agitating to close the Judge Rotenberg Center for many years, I recognize the same reasoning that has kept this horror of a facility open.
First of all, though many parents and family members do support JRC and their methods (i.e., use of pain and skin shock), the reasons they do support it (and many do not) have more to do with convenience. It’s true that having children with extreme behaviors can be incredibly stressful, and the use of ‘aversives’ has the TEMPORARY effect of stopping ‘problem’ behaviors. However, in the long term, JRC’s methods cause trauma, injury and severe depression. A person stops self-injuring for a short time, but doesn’t learn about other, more ‘positive’ behaviors can be substituted.
There have been studies that have shown that JRC parents are themselves misled and coerced into agreeing to have their kids shocked – JRC advertises (predominately in poor communities) that they are an alternative to incarceration; they lie about the extent of aversives, and keep many parents in the dark about what actually goes on there. Most ‘students’ stay there for years and even decades – which by itself suggests that their ‘method’ doesn’t work.
But perhaps most significantly, JRC is the ONLY place in the US that is allowed to use skin shock – every other state has outlawed it. That’s because the ‘status quo’ in behavioral techniques for self-injury is positive supports, which has been shown to work much more effectively. JRC is the only place using torture (the UN has said that’s what it is); yet there are good outcomes in all the other states.
Saying that ‘these are people NOBODY else would try to help’ is essentially repeating the propaganda that JRC spreads, which belongs in the dustbin of history, like much of what is done in modern psychiatry.
As someone who works as a ‘peer supporter’ in the MH system, I am disappointed to hear people dismissing what we do and sometimes labeling myself and other peer workers as partnering with psychiatric oppression. I have been told that I am ‘co-opted,’ ‘worthless,’ etc. and there’s been a long line of comments in various forums comparing what we do with Nazi collaborators. What I try to do in my work is to spread the word that a more empowered and dignified life, away from the MH system, is possible – including wellness, employment and independence.
It can be quite a struggle, when there is tremendous resistance in the culture at large and in provider agencies to the peer role (or, more often, misunderstandings of our role). I see some people where I work who ‘get it,’ and many others who blindly believe in the orthodoxy of the medical model. Often I am the only one speaking up for more dignity for the people we serve. It can be a very lonely place to be, and combined with a relative lack of peer support for peer supporters, even more isolating.
For people in the system, learned helplessness is a huge issue. At the group home level, not many people have heard the message that peer support can work, let alone messages that they CAN live lives that are empowered and independently. I am sometimes the only one here who can reach out and introduce people clearly to the idea that there is More to life than institutions, rules, hierarchy and medication cocktails. I can and do steer people to peer-sun supports as often as I can, and stay away from making judgments for them (sometimes in the face of great pressure).
Do I believe that the status quo of psychiatry and ‘treatment’ have failed? Absolutely. But we shouldn’t throw the baby out with the bathwater by tossing those who are making change under the bus.
(Apologies for veering away from Malia’s important argument!)
Amen! From my own advocacy efforts (granting of fresh air access for people in the MH system), the biggest obstacle is the power and money of hospital trade organizations, who have spend thousands of dollars to oppose such a basic idea. Essentially, if providing more rights costs $.01, they’re against it. The pursuit of profit overrides human dignity. Citizens United will be the ruin of democracy. And for Murphy, the interest groups have a golden opportunity – from Big Pharma to Big Hospital, professional trade groups, etc. etc.
I agree that there are lots of other issues at play here, especially for African-Americans. But I think appearance matters too. I don’t recall seeing much of anything suggesting racism on this site. But when people look at the site and see one white face after another, it sends a pretty strong message, even without intent. I don’t want to belabor the point, and I appreciate Emmeline’s comment and do not doubt her sincerity, and one African-American blogger out of 100-120 is pretty startling, even to this white man. When trying to recruit people to your point of view, ‘appearance’ matters!
Perhaps we need to agree to disagree, yes. I do see many references to slavery and the civil rights movement here on MIA – not necessarily inappropriate or wrong, but they don’t (to me at least) sound completely OK to the public (especially non-whites) coming from predominately white authors.
It’s clear that there are lots of people around the world that are part of MIA. If they volunteering to write or being asked isn’t entirely clear. My concerns are about public perception. I do agree that the statement “there aren’t any” doesn’t sound very appropriate as spoken, however!
I appreciate the local focus on diversity. I don’t think the filmmakers set out to be racially exclusionary, however, and nor does MIA. I don’t see, looking in a general sense, how the lack of diversity is really any different in this case. Both “sides,” it appears, struggle in regards to the topic…
(I apologize for straying a bit from the topic – I realize that MIA has community forums, but I feel far more people will read a comment posted here. I haven’t seen the film yet, and I share the author’s general concerns).
I feel the need to point out that the fact that the film’s lack of racial diversity (I haven’t seen it yet) seems to be (inadvertently) reflected by the authorship of the MIA blog itself, which is NOT a reflection of MIA itself nor its authors (myself included), who I believe are the FURTHEST thing from racially biased, having known and admired many of them personally. However, the VAST majority of posts (and authors) here are coming from white people (of about 120 regular authors, I only count 2-3 non-white faces, and these contributors haven’t posted for quite a while).
I believe that MIA is in danger of APPEARING racially biased – in fact, I have seen several people in the online world express distrust towards this movement because of this seeming bias; I think this needs to be addressed!
I think bpd is expressing an opinion, not “silencing” anyone.
Let me be clear that I greatly respect Mr. Oaks’ enthusiasm for advocacy around this topic, and the (many) contributions he has made to the movement that MiA is about. I also (passionately!) believe that global warming is an extremely critical issue, and we need a tremendous amount of advocacy to stop climate change.
But I think it’s fair to argue that blogging about climate change can be seen as ‘scope creep’ that takes away from the specific issues this site is primarily focused on. There are certainly many other places on the web to discuss and organize on the issue.
I think it’s a dangerous precedent when we see differences of opinion as ‘oppression’ or ‘silencing,’ and I’ve seen this before on this site. I don’t agree at all with BPD about climate change, but I think he has a good point about whether or not posting about climate change will dilute the overall message.
Hi Someone Else, I can’t speak for what happens where you are located, but here in MA, one of the existing “fundamental rights” is the right to have visitors of one’s own choosing, in privacy, and at times that are convenient to patient and visitor. Of course, without clarification and enforcement, the hospitals have a green light to do exactly what they want.
Thanks for your kind words and your advocacy! I read one of your books many years ago, before becoming an advocate, I think – one of the first exposes of psych units I read!
I have found that of all the other Five Fundamental Rights, (arguably) the one that is most brazenly violated is phones. I have been in 5 hospital facilities and seen several more, and can’t recall ONE that fully respects the telephone right – “reasonable access,” with privacy. Congrats to you or speaking out loudly. I have seen or heard of phones in the middle of hallways, pay phones only without access to money to make calls, locked phone cubicles, surveillance of phone calls, etc. etc.
In the years we have been working on the combined fresh air/rights enforcement bill, I’ve heard all manner of excuses for violating the right to communicate by phone: “If we let people use the phone, they’ll stay on for 5 hours”; “We can’t afford to create a private space for phones”; “private phone areas would be too claustrophobic,” and the ever-present “we shut the phones off during group times.” (As if attendance in groups trumps the right to communicate). The MA DMH introduced an electronic devices policy, which (in theory) would allow people to have cell phones, smart phones, etc., but I have major doubts as to how that is working. (Most cell phones have cameras, so are immediately confiscated). It’s an issue at group homes too.
In addition to supporting the continuing bill that would finally put ‘teeth’ in the Six Fundamental Rights, I am hoping that legal action (as suggested above) can and will be pursued regarding this law – which is now 17 years old and not taken seriously.
Yes, very true. And hospitals are under mandates to change meds, even if there’s no real reason. There have also been some interesting studies about the effects of fluorescent lighting on one’s mental state. Fluorescents are a staple at most psych hospital units, yet they can cause disassociation and throw people’s circadian rhythms off severely.
I understand your concerns. While getting the words in the law is a milestone, the lack of focus on enforcement continues to be pretty appalling. The original bill text contained language that would create such robust mechanisms, but it has been the first thing to go in committee hearings. I believe that besides public ignorance and discrimination, the fact that two major lobbying groups for hospitals are incredibly powerful and moneyed is an important part of why the fight was (is) so hard; also, the Dept. of Mental Health’s greatly diminished complaint review process prevents such violations from being taken seriously. I still hope that a continued groundswell of advocacy ensues, and perhaps the outspoken new AG here will take notice.
Thank you Robert for your kind words and steadfast support. The outstanding testimony you wrote summed it up so well – reminding us of the age of “moral treatment” recognized fresh air and outdoor access as a cornerstone to recovery and health. And this was almost 200 years ago! It’s still astonishing that something so elemental and basic can be taken away based on diagnosis; it shows that the most basic aspects of humanity can be denied simply on a label. As Steve says below, even maximum-security prisoners and livestock has more rights in this regard!
Thanks B, and apologies for that wording. I agree that it is frustrating that it takes so much time and effort to get anything done…it speaks to the corrupting influence of Big Hospital (and the legions of lobbyists for the psych industry, so powerful here) that small gains are so difficult. We need to be ever more vocal in demanding our humanity.
It is true that the bill, as passed, lacks robust mechanisms, yes. We have been steadfastly pushing for a bill that also includes rigorous enforcement of the entire “Fundamental Rights” law (which this bill did originally). Due to pressures from the hospital industry, and the (sadly, inevitable) compromises that are part of every piece of passed legislation, what we have is the right to fresh air in the language of the law. Is that ideal? No, not at all. However, given the extreme difficulty and effort needed to get the language through, it is a victory in the sense that the language is there, and will need to be posted. The issue is being TALKED ABOUT. AND, we are continuing to push a new bill that would create the robust enforcement mechanisms needed. That MUST be passed.
In other words, I know it’s easy to dismiss this piece of news and be critical of those who have worked hard to pass the bill for compromising too much. I only hope that the core message – that access to fresh air and the outdoors is not a privilege, not a luxury and not to be tied in with “risk management” – stirs public knowledge, and that this victory, while arguably symbolic, can be built upon.
Markps2, the fact that Fiachra posted a link to Lou Reed is not any kind of endorsement of ECT. Reed was traumatized by his early ECT and psych treatment – in fact, he wrote a song, “Kill Your Sons,” about it. Yes, the Wikipedia site has a link called “Can electroshock therapy make you a better singer?” but it’s a lot more about music than anything else (in fact, it condemns ECT also).
I think this post brings up an important point. I believe that MIA is a great resource and voice, and I am proud to have been a part of that. And I also believe strongly that the authors are sincere in their advocacy for human rights for ALL people.
However, I have heard several comments on the web about the fact that a disproportionately large majority of authors here (and in some communities of ‘mental health’ activism – my term for it anyway), are white. Again, let me reiterate that I DO NOT believe anyone here is interested in discrimination; however, a look at the “Writers” link shows that out of at least 100+ regular authors, there are only about 3-4 persons of color. I think MiA – a most worthy enterprise – needs to be aware that there is an appearance of bias that could lead to division, and I have heard valid complaints that there isn’t diversity among the authorship of the blog.
I’m not singling out this or any other posts on here, but I wonder if we’re losing support!
As someone who has been outspokenly opposed to the Judge Rotenberg Center (JRC) (especially as it is located in my own State, and kept open by those in power here long after most states have condemned and outlawed the practice), I find this comment quite alarming. How ANYONE who knows the details of JRC’s practices and extraordinary history of abuse and torture (summarized perfectly in the âPrisoners of the Apparatusâ article recommended by gemini22) can support their practices is beyond me.
I agree entirely with Jeffrey that forced neuroleptic drugging of children is a tremendous scandal, and I can certainly empathize with his experience (having endured neuroleptics myself). But sending very painful currents of electricity through people’s bodies is torture also. Don’t believe JRC’s claims of “amazing success.”
This is the place where:
– A young woman, non-verbal, sufferred a perforated appendix. Her very clear expressions of pain were ignored and she was “treated” with pinches, noxious odors, etc. for a week before she died of the illness.
– Any behaviors deemed as leading up to a “negative” behavior are shocked (i.e., if someone slaps their face, then raising their hands is shocked).
– The staff continues to insist that skin shocks only cause a temporary “sting” and possibly some skin discoloration; yet, stories (and pictures) abound of bloody open wounds, skin coming off, and the smell of burning flesh.
– A minimally-trained staff, usually young people, is given the godlike power to administer shocks whenever they see fit.
– The school spends millions of dollars per year on lawyers, and sends lobbyists to DC to oppose legislation to prevent abuse at schools.
Even if one agreed somehow with the outdated practice of “aversive conditioning” (which has been proved ineffective), the school’s long history of corruption, coverups, abuse/injury/death reports, and outright lies are easily enough to warrant shutting it down.
I agree with B and Gemini22’s comments entirely; torture of ALL kinds must end.
Jonah, I appreciate your passion and outspokenness. But the constant calling out of Jonathan K. doesn’t seem productive to me. I do think that there tends to be too much bluster and interpersonal sparring at times in these comments!
Hoping that this post isn’t somehow out of place or order…but MA is on the verge of approving a “Pilot” AOT program…calls needed THIS WEEK…
Iâm hoping that the Murphy bill is DOA, as it should be. However, there is a definite need for vigilance, as the ideas behind it are now much more public, thanks largely to the media hype. I donât know if this is happening elsewhere, but here in Massachusetts, there is some âtiptoeingâ towards AOT. The FY15 State Budget includes $250K to fund a âpilotâ AOT program, which will then report its data to the Legislature. Even in our âprogressiveâ state!
We are hoping that the Governor will veto this pilot program, as it is the only remaining part of the budget process. The legislature can override his veto by a 2/3 vote, but it is the only way to prevent the AOT program from happening that I know of.
If folks are interested in contacting Governor Deval Patrick and urging him to veto the AOT Pilot program, please FEEL FREE!
Phone: 617.725.4005
888.870.7770 (in state)
Fax: 617.727.9725
Suggestions on what to say:
– Urge the Governor to veto the language contained in line item 5046-0000 that would create a âpilot programâ for AOT in Massachusetts.
(Try to be brief, polite and to the point).
My apologies if my remarks feel invalidating. They were intended only as a general commentary to Danielâs post and the ensuing discussion, and not intended as a slur of any kind. They do reflect (I think) some of Bob W. and Sandyâs points.
What Iâm trying to say is that I see a good deal of criticism of views that are seen as having anything to do with the established âmental healthâ system, but I am concerned that some of the people who are seen as trying to change the system âfrom withinâ are sometimes targets for a kind of hostility that I think is unfortunate. I am in NO way trying to discourage people from voicing their opinions, nor advocating against free speech!
As someone who has âbeen thereâ (i.e., experienced âthe systemâ firsthand for many years), I understand that many who are active here have experienced the horrors and injustices of the âstatus quo.â And I have tremendous and enduring respect for EVERYONE who has been harmed by a system that has failed us in so many ways. Danielâs films in particular have been real eye-openers about the types of progress we desperately need today.
I fully recognize, from my own and othersâ experiences, that SO many people have been âotheredâ by a system that is badly broken. I have felt profoundly disempowered and written off in the past.
As a peer support worker, I am always fighting the patronizing attitudes, profound disempowerment, and tragic effects of long-term learned helplessness, not to mention the damage wrought by chronic medication and an overreliance on the orthodoxy of the medical model.
Iâve spoken up, loudly, against human rights violations and the oppressive call for forced treatment.
Yet I also respect the fact that there are people working, to some extent, âwithinâ the âsystem,â such as Sandra and Jonathan Keyes, for example, who are sincerely open to the fact that change is needed. I do find it unfortunate that both of them have been accused (by some) of being inherently part of a sinister agenda of force and oppression. I myself have been attacked for my opinions and my choice to be a peer support worker in a âtraditionalâ setting as well, called a turncoat, fascist, etc. I donât wish to offer many specific examples as I donât want to start wars of words with individuals!
I just think it is wrong to write off anyone who has any connection with âthe systemâ as inherently corrupt or evil.
And I have seen an increasing amount of vitriol that paints many âin the systemâ that way. There is a basic feel of âf–k psychiatryâ which, while very understandable through the lens of its victims, doesnât seem to advance mutual understanding. When I hear people decrying the value of dialogue (i.e., talking with others with basic respect and exchanging ideas), I wonder, how else will lasting change occur? If people donât talk to each other, they talk at each other, and anger and mistrust mount – which, I think, will turn away the people who are honestly seeking to listen to us. Plus, reading such incendiary language, and being attacked at times, can be triggering as well. I think Bobâs landmark work shouldnât become overshadowed by name-calling.
Again, without a doubt, weâve been seriously âotheredâ by the system. But I also believe that in any group where thereâs a majority of opinion on one side, othering can still happen to those who donât necessarily agree with what the majority thinks. Although weâre a smallish community, I think we need to be vigilant not to be dismissive of dissent, albeit dissent of a differing kind.
I must apologize, I should have posted this comment as a general comment on the article itself. I wish to clarify that my comment was not intended to be directed at you personally. Rather, it was intended as a general expression of what I see in the comments and the blog as a whole.
If thereâs no dialogue, then what is left? I have trouble seeing how things will ever change if people are just talking at each other. I think we have to be careful to avoid the absolute âOtheringâ of any group – be it those who are opposed to the psychiatric system (long the victims of such action), or, conversely, those seen as involved in any way with that system. I find it discouraging to see so much black and white, absolutist thinking here, which erodes the meaningful discussion of ideas.
“Peer counseling is the new face of coercive psychiatry.”
Except, when it’s not. Peer work can be effective, and interference by the traditional system would be easier to avoid if there were less antagonism towards those trying their best to practice it.
I’m sorry you experienced such damaging results from callous overmedication during childhood. However, I’d suggest reading the survivor’s letter linked to above by copy_cat before saying that ‘some electric shocks’ are preferable!
There are hundreds more – although many aren’t written out like this one. This and the videotaped incident that went to trial are regular occurrences at JRC.
I appreciate your spirited dedication and advocacy regarding the dangers of psych medications, and am moved by your fierce advocacy for your daughter.
At the same time, as someone who has spent many years advocating for an end to the horrors of the practices of the Judge Rotenberg Center, I don’t think there are ANY good things coming out of the issue. I don’t believe that the fact that JRC is in favor of eliminating psychotropic meds is, in itself, a good sign. Maybe I’m just being cranky, but I think there should be some separation from the JRC issue and more large-scale (but extremely valid) protests of psych meds. The place is an abomination.
Excellent post. Having been in advocacy to improve the psych hospital situation here in MA (and having many experiences of the problems), I completely agree that the paradigm of inpatient psych ‘care’ needs (desperately) to change.
It baffles me how many people think that inpatient hospital is the only, and best, way to get care/support in a crisis., yet the media tends to feed the public that concept. The ONLY useful purpose a psych unit has is to give some respite, and perhaps safety (from the outside world) to those in crisis – but ironically, hospitals often demoralize, disempower, even injure people. Violations of civil liberties abound, in the name of ‘safety.’ There are so many other possibilities out there for respite.
From what I’ve seen, it’s utterly paradoxical that people are hospitalized to stabilize and begin a healing path. The main objective of hospital stays is a quick med change (to satisfy the insurers that SOMETHING is being done). But medication changes take (on average) 4-6 weeks to “kick in.” Discharging people in a few days seems illogical given this fact, and I’m not trying to advocate for longer stays – but is it any suprise that people often come right back in, because their needs haven’t been met or the maelstrom of chemical changes is likely causing even more distress? What is the logical point? One thing is for sure – the hospitals will make more money, and they do. The infamous UHS chain (mostly psych hospitals, 200+ of them) has a long history of abuses and neglect, yet their profit margin averages 25-30% regularly (3 percent is considered ‘healthy.’)
#6 especially resonates with me. Having spent 10 years advocating for change in MA, I can tell you there are hotlines, and legal agencies that work very hard (but with very little funding). The “Five Fundamental Rights” law that lays out basic human rights in psych hospitals and group homes is rarely enforced, and legislation to correct that is “killed” every year. Complaints go to the Dept. of Mental Health (DMH), with a tiny investigation department that is instructed to keep these violations a low priority.
Meanwhile, the public debate is primarily about “more inpatient beds.” In MA, “Big Hospital” (yes, you can use the term!) has incredible financial and lobbying power…so much so that they deny the existence of any abuses and spend thousands battling enforcement of existing law and the humble suggestion that fresh air space should be a right!
Sadly, the misinformed public doesn’t know about these things until they happen to them. I do hope, however, that with time, things will change.
I am likewise concerned about NAMI’s close ties to pharma, and their refusal to break free from such a strictly medical model. As someone who was once [confession time] very involved in NAMI, I have been extremely disappointed in them. While I also believe that many involved in the organization are well-meaning, they simply aren’t informed.
Something that has alarmed me as well is NAMI’s ties to what I call Big Hospital. When we first began the “fresh air rights” advocacy in MA, NAMI was originally firmly on board, but then abruptly became ‘neutral’ as regards the issue. But looking at the lineup of sponsors for the annual walk, I realized the probable reason. Most if not all major psych hospitals, or hospitals with psych units, have been major sponsors. Not just that, but the lobbyist organization that fought fresh air and MANY other rights efforts was a contributor. And atop it all, the 2012 “National Sponsor” of NAMI-Walks was none other than Universal Health Services (UHS), a huge conglomerate of hospitals that specializes in ‘behavioral health.’ UHS has a long and ugly history of rights abuses, neglect, abuse and grevious medical errors. Its MA affiliate, Arbour Health Systems, is infamous (more at http://failuretocare.com/).
NAMI-MA and NAMI-National both have language in their bylaws stating that part of their mission is to be a watchdog for violations at inpatient facilities. How could this be, while taking money from them?
I donât think thereâs necessarily a conflict between âpublic goodâ and listening to the desires of oneâs patients; and I think itâs indicative of some larger themes in the debates here on MiA.
I am NOT suggesting here that Iâm a supporter of psychiatry. Having been a victim of its (many) flaws and still struggling to get off psych medications (after 25 years), I do strongly believe that doctors need to have FAR more discretion with prescribing, and in general, the lack of holistic thinking, as Jonathan and Sandra seem to understand (thank you!) is pretty appalling and tragic.
Yet if someone says, as Jonathan does, they are satisfied with their medications, is it his (or our) job to discourage the individual from taking them? I know I have expressed this sort of thing in the past, and received some rather unfortunate accusations from some, but the concept of âRecovery,â âself-determinationâ needs to be just that – respecting individual choices, even when we disagree with those choices. If we think about âthe public goodâ in a way that diminishes personal choice, are we actually helping people or denying them the autonomy of choice that is so often denied to us? To me, that makes us part of the problem. Of course, presenting alternatives is of utmost importance – but still, the choice is up to the individual.
In my opinion, a âprofessionalâ must acknowledge the individual good and the public goodâŚI worry that both âpro-psychiatryâ and âanti-psychiatryâ (for lack of a better term right now) can both impose ideologies that limit personal choice and freedom.
Thank you skybluesight, for educating me about my own motivations. I have learned that:
-I am practicing propaganda, rather than simply expressing my opinion;
-I am dedicated to the repression of other people;
-I am “destroying” the values of the group (how can this be done?), and I am merely “pretending” to be part of this “group” (which group are we talking about? Isn’t the ‘group’ here readers of MIA?)
Thank you Richard for this post, and the clarification of where I stand in general. This, to me, is the sort of conversation that points to real change.
No, I’m not “using propaganda techniques,” nor am I “trying to invalidate the opposition POV.” In no way, shape or form am I interested in “muzzling the choir” or somehow blocking the exchange of ideas. I’m simply one person, expressing his opinion.
I don’t have ANY problem with critical comments – that’s the cornerstone of democracy. I pretty strongly disagree with this post. However, I do believe that there are some unnecessarily personal attacks here. I’m simply stating that as what I see as a fact.
I don’t believe that Torrey, Jaffe, etc. are paying attention to this particular article, no. I was referring to the overall trend (as I see it), of increasing division within our community. Just how I see it, and I stand by my original comment.
This is true – it goes both ways; the term “narrow” is unfortunate. In this case, the majority of personal attacking is directed at the author. The posting guides ask for civility and not attacking personally, aside from the dictionary definition of ‘slander.’ And no, I’m not going to “report” comments here, because everyone will know I’m the one doing it, henceforth making me a target as well!
I can’t help but wonder if the likes of Torrey, Jaffe, etc. feel emboldened by this kind of dischord.
I am not particularly in agreement with the author of this post; it doesn’t seem to be presented as organized or persuasive, and reliant on an outdated view of the medical model. However (and I realize I am taking some risk saying this), I am seeing, in these remarks, an awful lot of rage – which, in itself, is OK, but it’s crossing the line into outright personal contempt and slander. “Grandiosity…murderer…etc., etc.” Robert Whitaker has always been able to disagree strongly, but with a civil tongue, and without long diatribes that either attack the author personally or leading comments that seem to be for the purpose of shaming. I have no doubt that the people who comment here have had horrific experiences at the hands of the system, and I honor that. But is it possible we are inadvertently passing on the trauma?
If our movement is to be taken seriously, perhaps we should stay away from simply raging against The System (incredibly flawed as it is), and have a true dialogue – even with those we disagree with. Bloggers should be able to comment without being the object of mudslinging. Where is the moderator?
How can you make change if you’re preaching to a choir?
There’s no doubt that white males have had (and continue to have) too much power. However, I find the tendency to point fingers of blame at any one population (in this case, white men) in the name of ‘equality for all’ to be counterproductive in many ways. There’s a good deal of “instruction” here, directed at white males, about how to behave, which seems based on a blanket assumption that ALL white men are ignorant and intolerant.
On that note, and speaking as an MiA reader and occasional author, I wish to point out that out of app. 101 listed MiA bloggers (both domestic and foreign, myself included) there is only ONE person of color (and she hasn’t posted in a long time).
I am NOT implying that there’s any racist/intolerant intent. But when the voices of a major segment of the population are missing, our movement suffers and risks being perceived as intolerant, and ‘called out’ on it more and more often.
This is an excellent and concise posting. It’s hard to believe that the State of Massachusetts, known for being so progressive and forward-thinking can be so consistently backward in matters of oversight and human rights. The prominence of the medical establishment is no guarantee of anything, either.
Yes, I hear what you’re saying – but even they can’t be left out of the conversation. It concerns me when we speak of the (large) group of people who are taking medication and come to false conclusions about them. In my opinion, that kind of sentiment can discourage the kind of productive discussion, because it leaves out most of the intended audience.
“The majority of people who are O.K. with taking these drugs are also O.K. with being forced to take them sometimes, and are most definitely O.K. with other people being forced to take them.”
I profoundly disagree. We must avoid the slippery slope of assuming things like this.
Using the logic of the above saying, people who take medication – for ANY reason, choice or not – we basically shouldn’t (and couldn’t) engage new people and ideas to our movement. Most of the people blogging on this site have, at one time, taken psych meds, and/or believed they were the ‘way to go.’ That doesn’t automatically mean they approve of force.
If this movement is to be successful, that can only happen unless people change their minds. Some won’t, but otherwise, it’s not a movement at all – just preaching to the choir.
The thing is, if we stick to forums that validate our point of view, we may not find that validation in an argument that is extremely divisive! I agree that it’s difficult to convince those who so strongly believe they’re ‘right’ otherwise (I tried with our friend Mr. Jaffe for a long time), but given the gravity of this issue, (and the powerful interests parroting Torrey), some kind of confrontation may be necessary. Zones of relative comfort, where many people agree with everyone else, can impede progress, whether on ‘our’ side or others’.
Monica, I wanted to express thanks for expressing the dangers of extreme “black and white” attitudes toward med withdrawal. The tone of the conversation occasionally seems rather dogmatic to me, and I have seen some examples of bullying and groupthink even here on MIA to that extent.
I am about halfway through a taper of benzos (after at least 16 years on them), and when that is finished, I seriously want to taper the SSRI (I’ve been on those going on 23 years, I think). I realize the effects of withdrawal can be pretty severe, and although I haven’t seen anything too severe as yet, I know it won’t be easy. That said, sometimes the postings about med withdrawal have the tendency to paint a picture that is unnecessarily bleak. I appreciate Stuart’s post and the information in it, and I also realize that taking it at face value can lead to the perception that there is no hope for the future – something I can’t abide by, because I’ve seen it.
I am increasingly wary of some anti-med figures and the polarized views that are around. As a Peer Specialist, I have seen it hinted that other peer workers should make it a point to get involved in discussions around medication in our agencies (with an unmistakeable inference that such involvement be against medication). But the same piece also condemns (rightfully so) the possiblity of peer workers being involved in med compliance, ‘sectioning,’ etc.
But if we are to keep to our charge as peer workers to always respect people’s personal choices, it’s a slippery slope. Peer workers aren’t supposed to outwardly influence those with whom we work. I fear that this dogmatic thinking can result in such a double standard. Thanks for speaking up on this!
Thanks for your comment. I certainly can agree that politics and public policy here in MA are unbelievably complex, backward and frustrating. Although Mass. has a reputation for progressivism, the ‘status quo’ reigns supreme. In the case of ‘mental health’ policy, the power of the medical system ensures they get what they want. The hospital lobby here is incredibly powerful.
That being said, I do think it depends on where in the State you are. There are some great places here, along with the ones with more social problems (Everett and Lawrence are, of course, known for this). Also, many of the top activists we work with (Judi Chamberlin, Dan Fisher, Pat Deegan…and Robert Whitaker!) are all in Mass. Personally, I think that the issues presented here are issues in many other States as well; i.e., the movement towards overbearing “risk management” and coercion. (I’d love to hear other peoples’ accounts from other States!!)
I don’t know how a whole community could be the subject of focus, although I completely agree that our society (cities and towns) need far a more inclusive sense of “community” identity. However, consider that Newtown, CT and Aurora, CO are relatively well-off and quiet communities in general…
Certainly looks like it. There are definite possibilities of social control in here, and the public seems to buy it without really thinking (or knowing) what the “risky” people’s real lives are about, that they have value and strength and dignity. Thanks Jeffrey!
Thank you so much for such an eloquent and important post, Matt. I have been very interested in the importance of the outdoors and exercise in wellness. I am constantly surprised that so many in the ‘established,’ provider-based world seem to discount how important both of these are in recovery, and the fact that the bill we have put forth to the Mass. Legislature four times (about to go into a fifth), calling for access to the outdoors, has been so solidly opposed by lobbyists and ignored even by groups supposedly ‘allies.’ It’s dismissed as trivial, when in fact, it’s just the opposite.
As a result of fighting so hard for this, my personal interest in the outdoors and my belief that fresh air and exercise is so important has grown. It’s especially important for me right now, with the cold weather, the pull of the computer, and my own benzo taper I am pursuing as well. I think I’ll plan some walks in for this week!
Many, many kudos for such a beautifully-written and necessary article. It’s richly but tragically ironic that Ms. Long’s thoughtless comments will end up only hurting more children. I am seeing more people jumping on the ‘my child will hurt/kill’ bandwagon, with no thought to the types of healing that really works. It seems like in America we only think about solving problems when tragedy happens, and then, we try the quickest, knee-jerk ‘solutions.’
I’m glad that you and your son have been afforded the right to nature. I hope my article reflects how important access to the outdoors is for so many, and even though the lobbyists and CEOs fight it all the way, saying that fresh air will cost money, they don’t see that ultimately, nature can be something which heals, and even a preventative measure, which would SAVE vast amounts of money.
Of course things are different with a national health system as you have in the UK. The increasing privatization of health care has affected most Americans, and not for the better, in my own opinion – unless they have great wealth. Unfortunately, the mental health system here in the USA is a sad illustration of the nefarious work of Profit.
This issue really does encapsulate the ongoing discrimination and devaluation of dignity the peer/survivor population faces. In many ways, this is one of the last civil rights movements. Psychiatric hospitals seem to have far more leeway than any other institutions in health care and otherwise to suppress the most basic human rights.
I don’t believe that ALL psych hospital units are necessarily horrible, or that there aren’t some truly caring and decent people who work at them (several top supporters of this effort have been employees of hospitals). However, the for-profit, “risk management is everything” mindset, plus chronic understaffing, feeds this reality. And it’s true, convicted criminals in “Supermax” prisons enjoy the right to fresh air; so do farm animals. Things need to change.
I agree totally with you. It is most ironic that places charged with ‘healing’ are very often cold, institutional, and increasingly indoors only.
Regarding the brain scan idea: there has been a huge amount of study (Part One goes over this in some detail) proving that access to the outdoors has dramatic positive effects on the mind. Not many studies are biological, but I’m sure the results would be dramatic. The studies that have been done over the years not only prove WITHOUT ANY DOUBT that fresh air, especially combined with exercise, help people feel better, the magnitude of the results is very impressive!
And you are right about prisoners getting fresh air; in fact, livestock has that right too, under FDA guidelines for organic food!
Some new units are being built with attention to the outdoors, and in the State of MA anyway, almost all publicly-run facilities have access. I haven’t heard of any facility that allows time-unlimited access per day, and that’s great to hear. However, hearing of locked bathrooms is upsetting. They can remove fixtures or furniture to prevent suicide attempts, but I don’t locking bathrooms is ethical.
Regarding hospital units on upper floors, I have seen and heard about hospitals in Mass. who have created enclosed spaces on rooftops, despite a reflexive (and utterly wrong)argument that rooftop spaces = guarantee of suicide risk. And of course hospitals, especially private ones, are, (and I’m quoting an executive directly here) focused on “stabilization” in the short term and not “treatment” (at least, of the non-medical sort).
It’s good to hear that the hospital you work at has discovered the value of fresh air, though!
Thank you Mary Ellen for speaking so eloquently about this huge topic.
I’m glad to see some more interest in integrating systems transformation with human rights activism. Unfortunately, organization of our population isn’t always as strong as it needs to be.
In Massachusetts, where I live, there’s a law – 14 years old now – that delineates five of the MOST BASIC human rights of peer/survivors: access to telephones, to visitors, to unopened and uncensored mail, to a respectful and humane environment, and to access to legal counsel and outside supports. However, the law is rarely enforced, and it doesn’t contain any strong and meaningful provision for enforcement. In fact, the law is required to be posted, which it rarely is.
Part of what is needed, then, is making people and staff aware that these rights even exist al all! I have spoken to large groups about this, and when I ask people what the Five Fundamental Rights are, very few know. Yet it’s State Law!!!
One thing that really concerns me is that the training for Peer Specialists has omitted the section on legal rights and the basic structure of the State mental health system. It’s great training by great people, but I know that when I took the course, this section was not covered, and I have heard it still isn’t. (Anyone reading this with more up-to-date knowledge, please let me know!) I just think that if we’re sending dozens of new peer specialists out into the world, they SHOULD know the basic rights we are charged with advocating for. I don’t know why this information has been removed – maybe pressure from the State’s Dept. of Mental Health?
Also, I’ve come to realize that working with the Legislature is extremely challenging, and we must always be prepared to act OUTSIDE of this realm. (I’ve learned this by trial and error!) That means, among other things, a knowledge of corporate lobbyists and beaureacrats, because they have signficant money and power and are practically part of the furniture at State Houses all over the country.
And peer support for activists can’t be overstated. I have seen SO many wonderful, dedicated activists leave the scene because of the intensity of the arguing. I have seen more interpersonal attacks (sometimes extremely viscious) between US, which has been so destructive to our shared causes. I kinda think (and maybe there’s more merit to this) that maybe we need WRAP plans for activists! It’s truly a shame; we have so much we can do together.
What a fantastic speech. You have amazing talent and know how to drive a point home like no one else. I struggle with defining myself as ‘against psychiatry’ per se…yet everything you said rings true! Bravo!!!
Thanks Ted for your kind words. I will be following up in Part Two (a few weeks at most) about the “nuts and bolts” – the struggles to make change at a public polcy level. Stay tuned!
Thank you Russerford. I’m so sorry your young daughter had to go through what she has, and applaud your advocacy on her behalf. One of the points raised by the opposition to the bill has been, “people’s entrust us (hospitals) to keep their loved ones safe” (Thereby implying that fresh air isn’t ‘safe.’) But in my opinion, that’s a weak argument, because they are not mutually-exclusive things!
Thank you PC for your very kind words. It is one of the things that’s important but isn’t necessarily seen as so! I have Part Two on the way in about two weeks, and then possibly some of my own reflections about what I myself have learned from this project.
Also, his firm represented the notorious Judge Rotenberg Center in MA, which uses painful skin shock as a means of “behavior modification.”
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Hi Paul,
Thanks for describing your view in more detail. I appreciate your ideas and dedication to a worthy pursuit. I also read the article about Basaglia, which was very interesting.
However, I still canât understand the Buchenwald vs. Auschwitz comparison. While I completely agree the abuse and mistreatment of people in mental institutions was and still is a massive, horrific and largely-overlooked part of history, I believe that comparisons to the Holocaust, are, for lack of a better term, âapples to orangesâ comparisons. Auschwitz and Buchenwald were places designed for the sole purpose of extermination of human lives. As someone whose ancestors were murdered in the Holocaust, I think we have to be careful when using past events for comparisonâs sake.
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Could you expand upon what you mean by that? How have I misunderstood your comment?
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Wow. Maybe I’m not understanding the full context of this discussion, or maybe the above post by Paul was written with a strong sense of irony…but comparing Buchenwald and Auschwitz regarding which one was “better” is deeply, deeply offensive. These are both places designed with the sole purpose of genocidal mass murder on an industrial scale – it is unbelievable to me that ANYONE can make that argument, even in these days of “Alt-Right” and neo-Nazi resurgence. Paul, if I misunderstand this comment, please forgive me; but if not, this is an incredibly disgraceful ‘argument’ to make.
And yes, it’s difficult to see past the devastation that giant institutions like Danvers inflicted on so many – destroyed countless lives, but I see some value in exploring some of the ideals of the “moral treatment” philosophy, which, while contained within a flawed, outdated “institutional” philosophy, were at least offered with a sense of social responsibility. For me, it has been an important part of advocating for a right to fresh air, which I worked on for many years in Massachusetts (the law was passed, but is not being routinely enforced). Anyway, the value of exposure to nature was respected for a time, with positive results.
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Thanks so much for this post! As someone who has been following JRC for years, I am continually baffled by the lack of definitive action to stop JRC (on the local, statewide and national fronts), and the fact that the JRC issue tends to be largely ignored in national (and especially local) media. JRC has maintained a small army of high-powered lawyers and lobbyists (including Rudy Guiliani’s lobbying firm); perhaps that’s why the FDA is so afraid to take the action necessary to stop these barbaric practices.
As a ‘for instance,’ here’s some state records on lobbying, showing that JRC spent $120,000 last year for a professional lobbyist…
Search detail for: Judge Rotenberg Educational Center
Registration year: 2017
Address: 240 Turnpike Street Canton, MA, 02021 US / 781-828-2202
Brian S. Hickey Associates, Inc. $120,000.00
Employed Details about your lobbyist or entity’s efforts
01/01/2017 All legislative matters pertaining to the Judge Rotenberg Educational Center.
Total salaries paid: $120,000.00
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I agree with Steve. After spending over 10 years trying to have language put into Mass. state law allowing psych inpatients the right to fresh air daily, it baffles me at times when there are splashy stories breathlessly describing the benefits of going outside on mental health. Don’t get me wrong – I’m glad more attention is being paid to it, but sometimes it seems like the fact that going outside is beneficial is really just common sense and not necessarily needing reams of studies to prove that basic fact. (Of course, specific methods on how to increase the positive effects of going outside is worthy of some study).
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I’m glad to see that there is some more awareness of the effect of nature out there. Yet, another part of me wonders why this is seen as something new or groundbreaking. Feeling better while in nature is hard-wired into all human consciousness, and it really shouldn’t be seen as a “surprise.”
I’m very passionate about this issue, of course, because I have been working (13 years now), on getting hospitals, clinics, etc. in my home state of Massachusetts to mandate access to the outdoors (something afforded to Supermax prisoners and organic livestock). I am happy and proud that “daily access to fresh air and the outdoors” is now in the books, having been signed into law nearly 2 years ago.
However, this law has been undermined so much, both in the passage of the law, and the promulgation of the Dept. of Mental Health’s (DMH) regulations, that it is basically unenforceable. The original intent of the legislation – to ensure that EVERYONE in a ‘treatment’ setting – has been whittled down.
Before passage of the law, a last-minute amendment restricted access to the outdoors by making it dependent on “client’s clinical condition and safety,” and “the facility’s ability to safely provide such space.” After becoming law, DMH passed regulations with enough loopholes to drive a Mack truck through, and apparently, many hospitals have asked for “waivers” from having to provide fresh air access.
I guess I’m just venting a bit here, but the values (or lack thereof) of inpatient psychiatry do not include basic human dignity and the need to experience nature. The benefits of nature could help so many, but that would depend on creativity, initiative and “outside of the box” thinking that is entirely missing in so much of modern mental health care.
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I’m not sure if you are being sarcastic when you refer to Peter Singer glowingly, but he’s no hero to many, advocating for euthanasia of children with disabilities…
http://www.washingtontimes.com/news/2015/jun/16/peter-singer-princeton-bioethics-professor-faces-c/
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Hi Alex:
Thanks for your interest! Fortunately, JRC’s methods have fallen out of favor. The FDA has proposed an outright ban on skin shock, and it looks likely they will approve the ban – although their decision has been postponed until (perhaps) after the election, which is worrisome. Still, JRC would be able to use ‘aversives’ that don’t use shock – like they did before they developed the “GED” shock machines.
I am still amazed at how long it has taken to stop the place down. As a lifelong MA resident, it boggles my mind to no end that, even though there have been many State, National, and International investigations into JRC, the State of MA has not been able to stop it, and/or have, in many cases, refused to, believing the army of lawyers and lobbyists JRC has at its disposal. Even the current House Speaker here has steadfastly defended them, and a prominent State Rep, whose nephew is held there, has fought for them for years.
JRC uses the PR tactic of having parents tell their stories – usually en masse, using a similar template: They say how much they love their kids, explain in great detail how severely self-injurious they have been, and that JRC has been a godsend for them, etc. When presented like that, it’s remarkably effective.
Also, interesting to note that whereas in the past, most referrals to JRC were for people on the Autism spectrum, more recently, they are taking troubled kids (mostly minority children from NYC). It’s fascinating how blind society can be to things like this – even the Boston Globe has run Op-Eds praising the place. Instilling fear of ‘risk’ can very easily lead to such tyrannical ‘solutions.’
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givemeyourking, I know this may be seen as veering a bit off topic, but your comment regarding the ‘Rotenberg Method’ is way off-base in many ways. as someone who has been agitating to close the Judge Rotenberg Center for many years, I recognize the same reasoning that has kept this horror of a facility open.
First of all, though many parents and family members do support JRC and their methods (i.e., use of pain and skin shock), the reasons they do support it (and many do not) have more to do with convenience. It’s true that having children with extreme behaviors can be incredibly stressful, and the use of ‘aversives’ has the TEMPORARY effect of stopping ‘problem’ behaviors. However, in the long term, JRC’s methods cause trauma, injury and severe depression. A person stops self-injuring for a short time, but doesn’t learn about other, more ‘positive’ behaviors can be substituted.
There have been studies that have shown that JRC parents are themselves misled and coerced into agreeing to have their kids shocked – JRC advertises (predominately in poor communities) that they are an alternative to incarceration; they lie about the extent of aversives, and keep many parents in the dark about what actually goes on there. Most ‘students’ stay there for years and even decades – which by itself suggests that their ‘method’ doesn’t work.
But perhaps most significantly, JRC is the ONLY place in the US that is allowed to use skin shock – every other state has outlawed it. That’s because the ‘status quo’ in behavioral techniques for self-injury is positive supports, which has been shown to work much more effectively. JRC is the only place using torture (the UN has said that’s what it is); yet there are good outcomes in all the other states.
Saying that ‘these are people NOBODY else would try to help’ is essentially repeating the propaganda that JRC spreads, which belongs in the dustbin of history, like much of what is done in modern psychiatry.
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As someone who works as a ‘peer supporter’ in the MH system, I am disappointed to hear people dismissing what we do and sometimes labeling myself and other peer workers as partnering with psychiatric oppression. I have been told that I am ‘co-opted,’ ‘worthless,’ etc. and there’s been a long line of comments in various forums comparing what we do with Nazi collaborators. What I try to do in my work is to spread the word that a more empowered and dignified life, away from the MH system, is possible – including wellness, employment and independence.
It can be quite a struggle, when there is tremendous resistance in the culture at large and in provider agencies to the peer role (or, more often, misunderstandings of our role). I see some people where I work who ‘get it,’ and many others who blindly believe in the orthodoxy of the medical model. Often I am the only one speaking up for more dignity for the people we serve. It can be a very lonely place to be, and combined with a relative lack of peer support for peer supporters, even more isolating.
For people in the system, learned helplessness is a huge issue. At the group home level, not many people have heard the message that peer support can work, let alone messages that they CAN live lives that are empowered and independently. I am sometimes the only one here who can reach out and introduce people clearly to the idea that there is More to life than institutions, rules, hierarchy and medication cocktails. I can and do steer people to peer-sun supports as often as I can, and stay away from making judgments for them (sometimes in the face of great pressure).
Do I believe that the status quo of psychiatry and ‘treatment’ have failed? Absolutely. But we shouldn’t throw the baby out with the bathwater by tossing those who are making change under the bus.
(Apologies for veering away from Malia’s important argument!)
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Amen! From my own advocacy efforts (granting of fresh air access for people in the MH system), the biggest obstacle is the power and money of hospital trade organizations, who have spend thousands of dollars to oppose such a basic idea. Essentially, if providing more rights costs $.01, they’re against it. The pursuit of profit overrides human dignity. Citizens United will be the ruin of democracy. And for Murphy, the interest groups have a golden opportunity – from Big Pharma to Big Hospital, professional trade groups, etc. etc.
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I agree that there are lots of other issues at play here, especially for African-Americans. But I think appearance matters too. I don’t recall seeing much of anything suggesting racism on this site. But when people look at the site and see one white face after another, it sends a pretty strong message, even without intent. I don’t want to belabor the point, and I appreciate Emmeline’s comment and do not doubt her sincerity, and one African-American blogger out of 100-120 is pretty startling, even to this white man. When trying to recruit people to your point of view, ‘appearance’ matters!
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Perhaps we need to agree to disagree, yes. I do see many references to slavery and the civil rights movement here on MIA – not necessarily inappropriate or wrong, but they don’t (to me at least) sound completely OK to the public (especially non-whites) coming from predominately white authors.
It’s clear that there are lots of people around the world that are part of MIA. If they volunteering to write or being asked isn’t entirely clear. My concerns are about public perception. I do agree that the statement “there aren’t any” doesn’t sound very appropriate as spoken, however!
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I appreciate the local focus on diversity. I don’t think the filmmakers set out to be racially exclusionary, however, and nor does MIA. I don’t see, looking in a general sense, how the lack of diversity is really any different in this case. Both “sides,” it appears, struggle in regards to the topic…
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(I apologize for straying a bit from the topic – I realize that MIA has community forums, but I feel far more people will read a comment posted here. I haven’t seen the film yet, and I share the author’s general concerns).
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I feel the need to point out that the fact that the film’s lack of racial diversity (I haven’t seen it yet) seems to be (inadvertently) reflected by the authorship of the MIA blog itself, which is NOT a reflection of MIA itself nor its authors (myself included), who I believe are the FURTHEST thing from racially biased, having known and admired many of them personally. However, the VAST majority of posts (and authors) here are coming from white people (of about 120 regular authors, I only count 2-3 non-white faces, and these contributors haven’t posted for quite a while).
I believe that MIA is in danger of APPEARING racially biased – in fact, I have seen several people in the online world express distrust towards this movement because of this seeming bias; I think this needs to be addressed!
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I think bpd is expressing an opinion, not “silencing” anyone.
Let me be clear that I greatly respect Mr. Oaks’ enthusiasm for advocacy around this topic, and the (many) contributions he has made to the movement that MiA is about. I also (passionately!) believe that global warming is an extremely critical issue, and we need a tremendous amount of advocacy to stop climate change.
But I think it’s fair to argue that blogging about climate change can be seen as ‘scope creep’ that takes away from the specific issues this site is primarily focused on. There are certainly many other places on the web to discuss and organize on the issue.
I think it’s a dangerous precedent when we see differences of opinion as ‘oppression’ or ‘silencing,’ and I’ve seen this before on this site. I don’t agree at all with BPD about climate change, but I think he has a good point about whether or not posting about climate change will dilute the overall message.
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Hi Someone Else, I can’t speak for what happens where you are located, but here in MA, one of the existing “fundamental rights” is the right to have visitors of one’s own choosing, in privacy, and at times that are convenient to patient and visitor. Of course, without clarification and enforcement, the hospitals have a green light to do exactly what they want.
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Hi Julie:
Thanks for your kind words and your advocacy! I read one of your books many years ago, before becoming an advocate, I think – one of the first exposes of psych units I read!
I have found that of all the other Five Fundamental Rights, (arguably) the one that is most brazenly violated is phones. I have been in 5 hospital facilities and seen several more, and can’t recall ONE that fully respects the telephone right – “reasonable access,” with privacy. Congrats to you or speaking out loudly. I have seen or heard of phones in the middle of hallways, pay phones only without access to money to make calls, locked phone cubicles, surveillance of phone calls, etc. etc.
In the years we have been working on the combined fresh air/rights enforcement bill, I’ve heard all manner of excuses for violating the right to communicate by phone: “If we let people use the phone, they’ll stay on for 5 hours”; “We can’t afford to create a private space for phones”; “private phone areas would be too claustrophobic,” and the ever-present “we shut the phones off during group times.” (As if attendance in groups trumps the right to communicate). The MA DMH introduced an electronic devices policy, which (in theory) would allow people to have cell phones, smart phones, etc., but I have major doubts as to how that is working. (Most cell phones have cameras, so are immediately confiscated). It’s an issue at group homes too.
In addition to supporting the continuing bill that would finally put ‘teeth’ in the Six Fundamental Rights, I am hoping that legal action (as suggested above) can and will be pursued regarding this law – which is now 17 years old and not taken seriously.
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Yes, very true. And hospitals are under mandates to change meds, even if there’s no real reason. There have also been some interesting studies about the effects of fluorescent lighting on one’s mental state. Fluorescents are a staple at most psych hospital units, yet they can cause disassociation and throw people’s circadian rhythms off severely.
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I understand your concerns. While getting the words in the law is a milestone, the lack of focus on enforcement continues to be pretty appalling. The original bill text contained language that would create such robust mechanisms, but it has been the first thing to go in committee hearings. I believe that besides public ignorance and discrimination, the fact that two major lobbying groups for hospitals are incredibly powerful and moneyed is an important part of why the fight was (is) so hard; also, the Dept. of Mental Health’s greatly diminished complaint review process prevents such violations from being taken seriously. I still hope that a continued groundswell of advocacy ensues, and perhaps the outspoken new AG here will take notice.
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Thank you Robert for your kind words and steadfast support. The outstanding testimony you wrote summed it up so well – reminding us of the age of “moral treatment” recognized fresh air and outdoor access as a cornerstone to recovery and health. And this was almost 200 years ago! It’s still astonishing that something so elemental and basic can be taken away based on diagnosis; it shows that the most basic aspects of humanity can be denied simply on a label. As Steve says below, even maximum-security prisoners and livestock has more rights in this regard!
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Very powerful account Fred. It’s absurd that something so basic is seen as ‘unnecessary’ and a ‘privilege.’
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Yes indeed. Despite MA’s progressive reputation, the hospitals have tremendous pull. Thanks Ted!
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Thanks B, and apologies for that wording. I agree that it is frustrating that it takes so much time and effort to get anything done…it speaks to the corrupting influence of Big Hospital (and the legions of lobbyists for the psych industry, so powerful here) that small gains are so difficult. We need to be ever more vocal in demanding our humanity.
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It is true that the bill, as passed, lacks robust mechanisms, yes. We have been steadfastly pushing for a bill that also includes rigorous enforcement of the entire “Fundamental Rights” law (which this bill did originally). Due to pressures from the hospital industry, and the (sadly, inevitable) compromises that are part of every piece of passed legislation, what we have is the right to fresh air in the language of the law. Is that ideal? No, not at all. However, given the extreme difficulty and effort needed to get the language through, it is a victory in the sense that the language is there, and will need to be posted. The issue is being TALKED ABOUT. AND, we are continuing to push a new bill that would create the robust enforcement mechanisms needed. That MUST be passed.
In other words, I know it’s easy to dismiss this piece of news and be critical of those who have worked hard to pass the bill for compromising too much. I only hope that the core message – that access to fresh air and the outdoors is not a privilege, not a luxury and not to be tied in with “risk management” – stirs public knowledge, and that this victory, while arguably symbolic, can be built upon.
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Markps2, the fact that Fiachra posted a link to Lou Reed is not any kind of endorsement of ECT. Reed was traumatized by his early ECT and psych treatment – in fact, he wrote a song, “Kill Your Sons,” about it. Yes, the Wikipedia site has a link called “Can electroshock therapy make you a better singer?” but it’s a lot more about music than anything else (in fact, it condemns ECT also).
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I think this post brings up an important point. I believe that MIA is a great resource and voice, and I am proud to have been a part of that. And I also believe strongly that the authors are sincere in their advocacy for human rights for ALL people.
However, I have heard several comments on the web about the fact that a disproportionately large majority of authors here (and in some communities of ‘mental health’ activism – my term for it anyway), are white. Again, let me reiterate that I DO NOT believe anyone here is interested in discrimination; however, a look at the “Writers” link shows that out of at least 100+ regular authors, there are only about 3-4 persons of color. I think MiA – a most worthy enterprise – needs to be aware that there is an appearance of bias that could lead to division, and I have heard valid complaints that there isn’t diversity among the authorship of the blog.
I’m not singling out this or any other posts on here, but I wonder if we’re losing support!
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…And the items listed above are just the tip of the iceberg.
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As someone who has been outspokenly opposed to the Judge Rotenberg Center (JRC) (especially as it is located in my own State, and kept open by those in power here long after most states have condemned and outlawed the practice), I find this comment quite alarming. How ANYONE who knows the details of JRC’s practices and extraordinary history of abuse and torture (summarized perfectly in the âPrisoners of the Apparatusâ article recommended by gemini22) can support their practices is beyond me.
I agree entirely with Jeffrey that forced neuroleptic drugging of children is a tremendous scandal, and I can certainly empathize with his experience (having endured neuroleptics myself). But sending very painful currents of electricity through people’s bodies is torture also. Don’t believe JRC’s claims of “amazing success.”
This is the place where:
– A young woman, non-verbal, sufferred a perforated appendix. Her very clear expressions of pain were ignored and she was “treated” with pinches, noxious odors, etc. for a week before she died of the illness.
– Any behaviors deemed as leading up to a “negative” behavior are shocked (i.e., if someone slaps their face, then raising their hands is shocked).
– The staff continues to insist that skin shocks only cause a temporary “sting” and possibly some skin discoloration; yet, stories (and pictures) abound of bloody open wounds, skin coming off, and the smell of burning flesh.
– A minimally-trained staff, usually young people, is given the godlike power to administer shocks whenever they see fit.
– The school spends millions of dollars per year on lawyers, and sends lobbyists to DC to oppose legislation to prevent abuse at schools.
Even if one agreed somehow with the outdated practice of “aversive conditioning” (which has been proved ineffective), the school’s long history of corruption, coverups, abuse/injury/death reports, and outright lies are easily enough to warrant shutting it down.
I agree with B and Gemini22’s comments entirely; torture of ALL kinds must end.
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Jonah, I appreciate your passion and outspokenness. But the constant calling out of Jonathan K. doesn’t seem productive to me. I do think that there tends to be too much bluster and interpersonal sparring at times in these comments!
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Hoping that this post isn’t somehow out of place or order…but MA is on the verge of approving a “Pilot” AOT program…calls needed THIS WEEK…
Iâm hoping that the Murphy bill is DOA, as it should be. However, there is a definite need for vigilance, as the ideas behind it are now much more public, thanks largely to the media hype. I donât know if this is happening elsewhere, but here in Massachusetts, there is some âtiptoeingâ towards AOT. The FY15 State Budget includes $250K to fund a âpilotâ AOT program, which will then report its data to the Legislature. Even in our âprogressiveâ state!
We are hoping that the Governor will veto this pilot program, as it is the only remaining part of the budget process. The legislature can override his veto by a 2/3 vote, but it is the only way to prevent the AOT program from happening that I know of.
If folks are interested in contacting Governor Deval Patrick and urging him to veto the AOT Pilot program, please FEEL FREE!
He can be contacted at:
http://www.mass.gov/governor/contact-us.html
(The above link gives you an email form).
Phone: 617.725.4005
888.870.7770 (in state)
Fax: 617.727.9725
Suggestions on what to say:
– Urge the Governor to veto the language contained in line item 5046-0000 that would create a âpilot programâ for AOT in Massachusetts.
(Try to be brief, polite and to the point).
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My apologies if my remarks feel invalidating. They were intended only as a general commentary to Danielâs post and the ensuing discussion, and not intended as a slur of any kind. They do reflect (I think) some of Bob W. and Sandyâs points.
What Iâm trying to say is that I see a good deal of criticism of views that are seen as having anything to do with the established âmental healthâ system, but I am concerned that some of the people who are seen as trying to change the system âfrom withinâ are sometimes targets for a kind of hostility that I think is unfortunate. I am in NO way trying to discourage people from voicing their opinions, nor advocating against free speech!
As someone who has âbeen thereâ (i.e., experienced âthe systemâ firsthand for many years), I understand that many who are active here have experienced the horrors and injustices of the âstatus quo.â And I have tremendous and enduring respect for EVERYONE who has been harmed by a system that has failed us in so many ways. Danielâs films in particular have been real eye-openers about the types of progress we desperately need today.
I fully recognize, from my own and othersâ experiences, that SO many people have been âotheredâ by a system that is badly broken. I have felt profoundly disempowered and written off in the past.
As a peer support worker, I am always fighting the patronizing attitudes, profound disempowerment, and tragic effects of long-term learned helplessness, not to mention the damage wrought by chronic medication and an overreliance on the orthodoxy of the medical model.
Iâve spoken up, loudly, against human rights violations and the oppressive call for forced treatment.
Yet I also respect the fact that there are people working, to some extent, âwithinâ the âsystem,â such as Sandra and Jonathan Keyes, for example, who are sincerely open to the fact that change is needed. I do find it unfortunate that both of them have been accused (by some) of being inherently part of a sinister agenda of force and oppression. I myself have been attacked for my opinions and my choice to be a peer support worker in a âtraditionalâ setting as well, called a turncoat, fascist, etc. I donât wish to offer many specific examples as I donât want to start wars of words with individuals!
I just think it is wrong to write off anyone who has any connection with âthe systemâ as inherently corrupt or evil.
And I have seen an increasing amount of vitriol that paints many âin the systemâ that way. There is a basic feel of âf–k psychiatryâ which, while very understandable through the lens of its victims, doesnât seem to advance mutual understanding. When I hear people decrying the value of dialogue (i.e., talking with others with basic respect and exchanging ideas), I wonder, how else will lasting change occur? If people donât talk to each other, they talk at each other, and anger and mistrust mount – which, I think, will turn away the people who are honestly seeking to listen to us. Plus, reading such incendiary language, and being attacked at times, can be triggering as well. I think Bobâs landmark work shouldnât become overshadowed by name-calling.
Again, without a doubt, weâve been seriously âotheredâ by the system. But I also believe that in any group where thereâs a majority of opinion on one side, othering can still happen to those who donât necessarily agree with what the majority thinks. Although weâre a smallish community, I think we need to be vigilant not to be dismissive of dissent, albeit dissent of a differing kind.
Thank you for your honest and heartfelt comments!
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Hi Jonah,
I must apologize, I should have posted this comment as a general comment on the article itself. I wish to clarify that my comment was not intended to be directed at you personally. Rather, it was intended as a general expression of what I see in the comments and the blog as a whole.
Again, apologies for my error.
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If thereâs no dialogue, then what is left? I have trouble seeing how things will ever change if people are just talking at each other. I think we have to be careful to avoid the absolute âOtheringâ of any group – be it those who are opposed to the psychiatric system (long the victims of such action), or, conversely, those seen as involved in any way with that system. I find it discouraging to see so much black and white, absolutist thinking here, which erodes the meaningful discussion of ideas.
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“Peer counseling is the new face of coercive psychiatry.”
Except, when it’s not. Peer work can be effective, and interference by the traditional system would be easier to avoid if there were less antagonism towards those trying their best to practice it.
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I’m sorry you experienced such damaging results from callous overmedication during childhood. However, I’d suggest reading the survivor’s letter linked to above by copy_cat before saying that ‘some electric shocks’ are preferable!
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There are hundreds more – although many aren’t written out like this one. This and the videotaped incident that went to trial are regular occurrences at JRC.
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Hi Madmom,
I appreciate your spirited dedication and advocacy regarding the dangers of psych medications, and am moved by your fierce advocacy for your daughter.
At the same time, as someone who has spent many years advocating for an end to the horrors of the practices of the Judge Rotenberg Center, I don’t think there are ANY good things coming out of the issue. I don’t believe that the fact that JRC is in favor of eliminating psychotropic meds is, in itself, a good sign. Maybe I’m just being cranky, but I think there should be some separation from the JRC issue and more large-scale (but extremely valid) protests of psych meds. The place is an abomination.
Best to you!
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Hi Jonathan,
Excellent post. Having been in advocacy to improve the psych hospital situation here in MA (and having many experiences of the problems), I completely agree that the paradigm of inpatient psych ‘care’ needs (desperately) to change.
It baffles me how many people think that inpatient hospital is the only, and best, way to get care/support in a crisis., yet the media tends to feed the public that concept. The ONLY useful purpose a psych unit has is to give some respite, and perhaps safety (from the outside world) to those in crisis – but ironically, hospitals often demoralize, disempower, even injure people. Violations of civil liberties abound, in the name of ‘safety.’ There are so many other possibilities out there for respite.
From what I’ve seen, it’s utterly paradoxical that people are hospitalized to stabilize and begin a healing path. The main objective of hospital stays is a quick med change (to satisfy the insurers that SOMETHING is being done). But medication changes take (on average) 4-6 weeks to “kick in.” Discharging people in a few days seems illogical given this fact, and I’m not trying to advocate for longer stays – but is it any suprise that people often come right back in, because their needs haven’t been met or the maelstrom of chemical changes is likely causing even more distress? What is the logical point? One thing is for sure – the hospitals will make more money, and they do. The infamous UHS chain (mostly psych hospitals, 200+ of them) has a long history of abuses and neglect, yet their profit margin averages 25-30% regularly (3 percent is considered ‘healthy.’)
#6 especially resonates with me. Having spent 10 years advocating for change in MA, I can tell you there are hotlines, and legal agencies that work very hard (but with very little funding). The “Five Fundamental Rights” law that lays out basic human rights in psych hospitals and group homes is rarely enforced, and legislation to correct that is “killed” every year. Complaints go to the Dept. of Mental Health (DMH), with a tiny investigation department that is instructed to keep these violations a low priority.
Meanwhile, the public debate is primarily about “more inpatient beds.” In MA, “Big Hospital” (yes, you can use the term!) has incredible financial and lobbying power…so much so that they deny the existence of any abuses and spend thousands battling enforcement of existing law and the humble suggestion that fresh air space should be a right!
Sadly, the misinformed public doesn’t know about these things until they happen to them. I do hope, however, that with time, things will change.
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I am likewise concerned about NAMI’s close ties to pharma, and their refusal to break free from such a strictly medical model. As someone who was once [confession time] very involved in NAMI, I have been extremely disappointed in them. While I also believe that many involved in the organization are well-meaning, they simply aren’t informed.
Something that has alarmed me as well is NAMI’s ties to what I call Big Hospital. When we first began the “fresh air rights” advocacy in MA, NAMI was originally firmly on board, but then abruptly became ‘neutral’ as regards the issue. But looking at the lineup of sponsors for the annual walk, I realized the probable reason. Most if not all major psych hospitals, or hospitals with psych units, have been major sponsors. Not just that, but the lobbyist organization that fought fresh air and MANY other rights efforts was a contributor. And atop it all, the 2012 “National Sponsor” of NAMI-Walks was none other than Universal Health Services (UHS), a huge conglomerate of hospitals that specializes in ‘behavioral health.’ UHS has a long and ugly history of rights abuses, neglect, abuse and grevious medical errors. Its MA affiliate, Arbour Health Systems, is infamous (more at http://failuretocare.com/).
NAMI-MA and NAMI-National both have language in their bylaws stating that part of their mission is to be a watchdog for violations at inpatient facilities. How could this be, while taking money from them?
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I donât think thereâs necessarily a conflict between âpublic goodâ and listening to the desires of oneâs patients; and I think itâs indicative of some larger themes in the debates here on MiA.
I am NOT suggesting here that Iâm a supporter of psychiatry. Having been a victim of its (many) flaws and still struggling to get off psych medications (after 25 years), I do strongly believe that doctors need to have FAR more discretion with prescribing, and in general, the lack of holistic thinking, as Jonathan and Sandra seem to understand (thank you!) is pretty appalling and tragic.
Yet if someone says, as Jonathan does, they are satisfied with their medications, is it his (or our) job to discourage the individual from taking them? I know I have expressed this sort of thing in the past, and received some rather unfortunate accusations from some, but the concept of âRecovery,â âself-determinationâ needs to be just that – respecting individual choices, even when we disagree with those choices. If we think about âthe public goodâ in a way that diminishes personal choice, are we actually helping people or denying them the autonomy of choice that is so often denied to us? To me, that makes us part of the problem. Of course, presenting alternatives is of utmost importance – but still, the choice is up to the individual.
In my opinion, a âprofessionalâ must acknowledge the individual good and the public goodâŚI worry that both âpro-psychiatryâ and âanti-psychiatryâ (for lack of a better term right now) can both impose ideologies that limit personal choice and freedom.
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Hi Matthew:
I hear what you’re saying. My statement, “Where is the moderator?” was misguided, and spoken at a point of frustration over what I see going on here.
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Thank you skybluesight, for educating me about my own motivations. I have learned that:
-I am practicing propaganda, rather than simply expressing my opinion;
-I am dedicated to the repression of other people;
-I am “destroying” the values of the group (how can this be done?), and I am merely “pretending” to be part of this “group” (which group are we talking about? Isn’t the ‘group’ here readers of MIA?)
Thank you again for setting me straight!
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Thank you Richard for this post, and the clarification of where I stand in general. This, to me, is the sort of conversation that points to real change.
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No, I’m not “using propaganda techniques,” nor am I “trying to invalidate the opposition POV.” In no way, shape or form am I interested in “muzzling the choir” or somehow blocking the exchange of ideas. I’m simply one person, expressing his opinion.
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I don’t have ANY problem with critical comments – that’s the cornerstone of democracy. I pretty strongly disagree with this post. However, I do believe that there are some unnecessarily personal attacks here. I’m simply stating that as what I see as a fact.
I don’t believe that Torrey, Jaffe, etc. are paying attention to this particular article, no. I was referring to the overall trend (as I see it), of increasing division within our community. Just how I see it, and I stand by my original comment.
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This is true – it goes both ways; the term “narrow” is unfortunate. In this case, the majority of personal attacking is directed at the author. The posting guides ask for civility and not attacking personally, aside from the dictionary definition of ‘slander.’ And no, I’m not going to “report” comments here, because everyone will know I’m the one doing it, henceforth making me a target as well!
I can’t help but wonder if the likes of Torrey, Jaffe, etc. feel emboldened by this kind of dischord.
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I am not particularly in agreement with the author of this post; it doesn’t seem to be presented as organized or persuasive, and reliant on an outdated view of the medical model. However (and I realize I am taking some risk saying this), I am seeing, in these remarks, an awful lot of rage – which, in itself, is OK, but it’s crossing the line into outright personal contempt and slander. “Grandiosity…murderer…etc., etc.” Robert Whitaker has always been able to disagree strongly, but with a civil tongue, and without long diatribes that either attack the author personally or leading comments that seem to be for the purpose of shaming. I have no doubt that the people who comment here have had horrific experiences at the hands of the system, and I honor that. But is it possible we are inadvertently passing on the trauma?
If our movement is to be taken seriously, perhaps we should stay away from simply raging against The System (incredibly flawed as it is), and have a true dialogue – even with those we disagree with. Bloggers should be able to comment without being the object of mudslinging. Where is the moderator?
How can you make change if you’re preaching to a choir?
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There’s no doubt that white males have had (and continue to have) too much power. However, I find the tendency to point fingers of blame at any one population (in this case, white men) in the name of ‘equality for all’ to be counterproductive in many ways. There’s a good deal of “instruction” here, directed at white males, about how to behave, which seems based on a blanket assumption that ALL white men are ignorant and intolerant.
On that note, and speaking as an MiA reader and occasional author, I wish to point out that out of app. 101 listed MiA bloggers (both domestic and foreign, myself included) there is only ONE person of color (and she hasn’t posted in a long time).
I am NOT implying that there’s any racist/intolerant intent. But when the voices of a major segment of the population are missing, our movement suffers and risks being perceived as intolerant, and ‘called out’ on it more and more often.
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This is an excellent and concise posting. It’s hard to believe that the State of Massachusetts, known for being so progressive and forward-thinking can be so consistently backward in matters of oversight and human rights. The prominence of the medical establishment is no guarantee of anything, either.
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Yes, I hear what you’re saying – but even they can’t be left out of the conversation. It concerns me when we speak of the (large) group of people who are taking medication and come to false conclusions about them. In my opinion, that kind of sentiment can discourage the kind of productive discussion, because it leaves out most of the intended audience.
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“The majority of people who are O.K. with taking these drugs are also O.K. with being forced to take them sometimes, and are most definitely O.K. with other people being forced to take them.”
I profoundly disagree. We must avoid the slippery slope of assuming things like this.
Using the logic of the above saying, people who take medication – for ANY reason, choice or not – we basically shouldn’t (and couldn’t) engage new people and ideas to our movement. Most of the people blogging on this site have, at one time, taken psych meds, and/or believed they were the ‘way to go.’ That doesn’t automatically mean they approve of force.
If this movement is to be successful, that can only happen unless people change their minds. Some won’t, but otherwise, it’s not a movement at all – just preaching to the choir.
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The thing is, if we stick to forums that validate our point of view, we may not find that validation in an argument that is extremely divisive! I agree that it’s difficult to convince those who so strongly believe they’re ‘right’ otherwise (I tried with our friend Mr. Jaffe for a long time), but given the gravity of this issue, (and the powerful interests parroting Torrey), some kind of confrontation may be necessary. Zones of relative comfort, where many people agree with everyone else, can impede progress, whether on ‘our’ side or others’.
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Monica, I wanted to express thanks for expressing the dangers of extreme “black and white” attitudes toward med withdrawal. The tone of the conversation occasionally seems rather dogmatic to me, and I have seen some examples of bullying and groupthink even here on MIA to that extent.
I am about halfway through a taper of benzos (after at least 16 years on them), and when that is finished, I seriously want to taper the SSRI (I’ve been on those going on 23 years, I think). I realize the effects of withdrawal can be pretty severe, and although I haven’t seen anything too severe as yet, I know it won’t be easy. That said, sometimes the postings about med withdrawal have the tendency to paint a picture that is unnecessarily bleak. I appreciate Stuart’s post and the information in it, and I also realize that taking it at face value can lead to the perception that there is no hope for the future – something I can’t abide by, because I’ve seen it.
I am increasingly wary of some anti-med figures and the polarized views that are around. As a Peer Specialist, I have seen it hinted that other peer workers should make it a point to get involved in discussions around medication in our agencies (with an unmistakeable inference that such involvement be against medication). But the same piece also condemns (rightfully so) the possiblity of peer workers being involved in med compliance, ‘sectioning,’ etc.
But if we are to keep to our charge as peer workers to always respect people’s personal choices, it’s a slippery slope. Peer workers aren’t supposed to outwardly influence those with whom we work. I fear that this dogmatic thinking can result in such a double standard. Thanks for speaking up on this!
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Hi mjk:
Thanks for your comment. I certainly can agree that politics and public policy here in MA are unbelievably complex, backward and frustrating. Although Mass. has a reputation for progressivism, the ‘status quo’ reigns supreme. In the case of ‘mental health’ policy, the power of the medical system ensures they get what they want. The hospital lobby here is incredibly powerful.
That being said, I do think it depends on where in the State you are. There are some great places here, along with the ones with more social problems (Everett and Lawrence are, of course, known for this). Also, many of the top activists we work with (Judi Chamberlin, Dan Fisher, Pat Deegan…and Robert Whitaker!) are all in Mass. Personally, I think that the issues presented here are issues in many other States as well; i.e., the movement towards overbearing “risk management” and coercion. (I’d love to hear other peoples’ accounts from other States!!)
I don’t know how a whole community could be the subject of focus, although I completely agree that our society (cities and towns) need far a more inclusive sense of “community” identity. However, consider that Newtown, CT and Aurora, CO are relatively well-off and quiet communities in general…
Anyway, I appreciate your thoughts!
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Certainly looks like it. There are definite possibilities of social control in here, and the public seems to buy it without really thinking (or knowing) what the “risky” people’s real lives are about, that they have value and strength and dignity. Thanks Jeffrey!
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Thanks A for a (needed) lighthearted take on this!
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Thank you so much for such an eloquent and important post, Matt. I have been very interested in the importance of the outdoors and exercise in wellness. I am constantly surprised that so many in the ‘established,’ provider-based world seem to discount how important both of these are in recovery, and the fact that the bill we have put forth to the Mass. Legislature four times (about to go into a fifth), calling for access to the outdoors, has been so solidly opposed by lobbyists and ignored even by groups supposedly ‘allies.’ It’s dismissed as trivial, when in fact, it’s just the opposite.
As a result of fighting so hard for this, my personal interest in the outdoors and my belief that fresh air and exercise is so important has grown. It’s especially important for me right now, with the cold weather, the pull of the computer, and my own benzo taper I am pursuing as well. I think I’ll plan some walks in for this week!
Again, thank you!!!
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Many, many kudos for such a beautifully-written and necessary article. It’s richly but tragically ironic that Ms. Long’s thoughtless comments will end up only hurting more children. I am seeing more people jumping on the ‘my child will hurt/kill’ bandwagon, with no thought to the types of healing that really works. It seems like in America we only think about solving problems when tragedy happens, and then, we try the quickest, knee-jerk ‘solutions.’
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Thanks for your reply Alix.
I’m glad that you and your son have been afforded the right to nature. I hope my article reflects how important access to the outdoors is for so many, and even though the lobbyists and CEOs fight it all the way, saying that fresh air will cost money, they don’t see that ultimately, nature can be something which heals, and even a preventative measure, which would SAVE vast amounts of money.
Of course things are different with a national health system as you have in the UK. The increasing privatization of health care has affected most Americans, and not for the better, in my own opinion – unless they have great wealth. Unfortunately, the mental health system here in the USA is a sad illustration of the nefarious work of Profit.
Best,
Jonathan Dosick
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Thanks for this Mark.
This issue really does encapsulate the ongoing discrimination and devaluation of dignity the peer/survivor population faces. In many ways, this is one of the last civil rights movements. Psychiatric hospitals seem to have far more leeway than any other institutions in health care and otherwise to suppress the most basic human rights.
I don’t believe that ALL psych hospital units are necessarily horrible, or that there aren’t some truly caring and decent people who work at them (several top supporters of this effort have been employees of hospitals). However, the for-profit, “risk management is everything” mindset, plus chronic understaffing, feeds this reality. And it’s true, convicted criminals in “Supermax” prisons enjoy the right to fresh air; so do farm animals. Things need to change.
Best,
Jonathan Dosick
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Thanks Steve for your insight!
I agree totally with you. It is most ironic that places charged with ‘healing’ are very often cold, institutional, and increasingly indoors only.
Regarding the brain scan idea: there has been a huge amount of study (Part One goes over this in some detail) proving that access to the outdoors has dramatic positive effects on the mind. Not many studies are biological, but I’m sure the results would be dramatic. The studies that have been done over the years not only prove WITHOUT ANY DOUBT that fresh air, especially combined with exercise, help people feel better, the magnitude of the results is very impressive!
And you are right about prisoners getting fresh air; in fact, livestock has that right too, under FDA guidelines for organic food!
Thanks again,
Jonathan Dosick
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Greetings, Stephen and thanks for your comment.
Some new units are being built with attention to the outdoors, and in the State of MA anyway, almost all publicly-run facilities have access. I haven’t heard of any facility that allows time-unlimited access per day, and that’s great to hear. However, hearing of locked bathrooms is upsetting. They can remove fixtures or furniture to prevent suicide attempts, but I don’t locking bathrooms is ethical.
Regarding hospital units on upper floors, I have seen and heard about hospitals in Mass. who have created enclosed spaces on rooftops, despite a reflexive (and utterly wrong)argument that rooftop spaces = guarantee of suicide risk. And of course hospitals, especially private ones, are, (and I’m quoting an executive directly here) focused on “stabilization” in the short term and not “treatment” (at least, of the non-medical sort).
It’s good to hear that the hospital you work at has discovered the value of fresh air, though!
Thanks,
Jonathan Dosick
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Thank you Mary Ellen for speaking so eloquently about this huge topic.
I’m glad to see some more interest in integrating systems transformation with human rights activism. Unfortunately, organization of our population isn’t always as strong as it needs to be.
In Massachusetts, where I live, there’s a law – 14 years old now – that delineates five of the MOST BASIC human rights of peer/survivors: access to telephones, to visitors, to unopened and uncensored mail, to a respectful and humane environment, and to access to legal counsel and outside supports. However, the law is rarely enforced, and it doesn’t contain any strong and meaningful provision for enforcement. In fact, the law is required to be posted, which it rarely is.
Part of what is needed, then, is making people and staff aware that these rights even exist al all! I have spoken to large groups about this, and when I ask people what the Five Fundamental Rights are, very few know. Yet it’s State Law!!!
One thing that really concerns me is that the training for Peer Specialists has omitted the section on legal rights and the basic structure of the State mental health system. It’s great training by great people, but I know that when I took the course, this section was not covered, and I have heard it still isn’t. (Anyone reading this with more up-to-date knowledge, please let me know!) I just think that if we’re sending dozens of new peer specialists out into the world, they SHOULD know the basic rights we are charged with advocating for. I don’t know why this information has been removed – maybe pressure from the State’s Dept. of Mental Health?
Also, I’ve come to realize that working with the Legislature is extremely challenging, and we must always be prepared to act OUTSIDE of this realm. (I’ve learned this by trial and error!) That means, among other things, a knowledge of corporate lobbyists and beaureacrats, because they have signficant money and power and are practically part of the furniture at State Houses all over the country.
And peer support for activists can’t be overstated. I have seen SO many wonderful, dedicated activists leave the scene because of the intensity of the arguing. I have seen more interpersonal attacks (sometimes extremely viscious) between US, which has been so destructive to our shared causes. I kinda think (and maybe there’s more merit to this) that maybe we need WRAP plans for activists! It’s truly a shame; we have so much we can do together.
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Laura,
What a fantastic speech. You have amazing talent and know how to drive a point home like no one else. I struggle with defining myself as ‘against psychiatry’ per se…yet everything you said rings true! Bravo!!!
Jon Dosick
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Thanks for your kind words and doing the work you do! The next piece will be out in about a week and a half.
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Thanks Ted for your kind words. I will be following up in Part Two (a few weeks at most) about the “nuts and bolts” – the struggles to make change at a public polcy level. Stay tuned!
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Thank you Russerford. I’m so sorry your young daughter had to go through what she has, and applaud your advocacy on her behalf. One of the points raised by the opposition to the bill has been, “people’s entrust us (hospitals) to keep their loved ones safe” (Thereby implying that fresh air isn’t ‘safe.’) But in my opinion, that’s a weak argument, because they are not mutually-exclusive things!
Jon Dosick
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Thank you PC for your very kind words. It is one of the things that’s important but isn’t necessarily seen as so! I have Part Two on the way in about two weeks, and then possibly some of my own reflections about what I myself have learned from this project.
Jon Dosick
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Thanks so much, Duane. I feel very lucky to have ‘stumbled’ on an issue that is so unique and ties in to our struggles on many different levels!
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