‘mad’ identity, medication, co-optation, mom etc.

by Timothy

Lately I’m even more unsettled than usual in conversations about the politics and practices surrounding ‘madness:’ talk where I might occupy any number of roles including doctoral student, nascent researcher, counseling and psychotherapy practitioner, family member, ‘survivor’, ‘service user’, ‘mad’ person, friend. You name it.

What follows will be in three parts:

• Some thoughts and questions on these issues.

• An edited transcript of a recent discussion with my mother on this topic.

• An excerpt from a recent list serv exchange I was in, also on this topic.

Some Thoughts

For me, many difficulties arise at the intersection of identity, difference, privilege, marginality, representation, choice, care and ‘truth’ in and of ‘madness.’ These questions, which I am unable to untangle for myself in any remotely articulable way, appear to be bound so tightly together that crucial entanglements go largely unexamined.

Medication, as an example, is a quite contentious topic in user/survivor communities and often appears mired in an intractable polarization. We overlook key questions when we focus narrowly on the risks and benefits of these drugs, whether or not they ‘work’ or even cause ‘psychosis.’  Clearly these are important matters. But also important is how the issue of medication use is bound up with other questions.

Questions like:

• What identities or discursive strategies form around, for example: employment of a narrative of recovery from the psychiatric system, vs. one of experience of ‘existential crisis’ vs. trauma recovery, vs. recovery from an ‘illness’ ?

• How then do these formations play out in terms of choices people make in how to live with these experiences in their own lives, or attempt to recommend or impose choices on others?

• Are these identities or discursive strategies simply a matter of choice? construction? Determined by cultural forces? Or might they in some way be reflective of, shall we say,  *actual* differences in experience or even bodies?

• To what extent do words like ‘recovery’ or ‘peer’ have any stable referent such that we can characterize their utility in terms of identity, discursive strategy or political implication in any given context?

• And who gets to decide anyway?

• Is it most useful or ‘true’ to think of all experiences of ‘madness’ or ‘distress’ as essentially falling on the same continuum of human experience, or is it important to frame differences in these experiences in terms of say, degree or kind?

• If ‘difference’ is important or useful, how can we acknowledge this without reifying hegemonic taxonomies (diagnoses) or simply creating new ones?

• What role do issues of poverty, privilege, culture, marginalization and so forth play in not only access to alternative frameworks and approaches, but also-and crucially- their salience and utility?

• Who among us can assume to know what is best for anyone save ourselves?

Clearly my own discussions, including this one, are subject to the same questions and critique. I’m certainly no less guilty of confusion, contradiction and oversimplification on these matters.

Now I bring in other voices (though admittedly within my own frame) in order to illustrate these matters with concrete examples. Hopefully the questions I’ve posed above will be more clear with these readings, though I certainly expect no final answers. I’ll just let these conversations speak the final words.

 Recent Illustrative Discussions

Bonnie; left. Lisa; center. Timothy; right.

Conversation with my Mother, Bonnie

My mother has lived with what she calls  a “severe mental illness” for most of her life. She has spent considerable amounts of time in public institutions, jail, in the homeless system and surviving on public assistance. She’s currently doing well, living in public housing, slowly trying to finish a bachelor’s degree and serving a charity she founded which provides dental services to impoverished mental health ‘consumers’. For context, I spent around half of my time growing up with her, and half in the care of other family members and foster homes.

I’ve edited this conversation, and it picks up at the end of a discussion about my mom’s stay in a state hospital as a teen, where I was later a patient, and about which I later created a mixed media installation. For more about that see this post. Here, among other things, we talk about my moms volunteer effort with a dental program she founded.

Timothy:  So there’s this idea about how we have to be very careful about how we represent stories like this. Because they can be sort of misrepresented or used towards ends that we wouldn’t  want.

Bonnie: Well I think there are a lot of stories out there. And a lot of stories that will never be written about people’s experiences. All I know is there were a lot of people there when I came and were still there  when I left. And might never be out ever. And my mother and father wanted to make sure I was out of there and never went back. So I had the family support but there were many people there who were just going to be living there indefinitely.  And I always thought, man, I am so lucky that  I am not one of those.

T: Yeah. You know mom, you say that, but then also how many times have you been in a state hospital?

B: Quite a bit.  Quite a bit.  I don’t know I’ve had so many admissions. I’d guess well over 100 admissions in various hospitals and psychiatric wards and all that. You know. All over the country. Gosh. I don’t know.  I don’t know. Years if it was chained one after the other.

T: And yet you say you’re lucky.

B: Well I saw some people that were in much worse shape than me Timothy.  I’ve seen a lot of suffering.

T: You said you’ve seen a lot of suffering, and now you’re working on the dental coalition, what is it that motivated you to do this?

B: Well I was having a terrible time with my own teeth, but I had family and friends that helped me out with my dental bills. But I realized that not everybody has that and wanted to do something about it.

T: So describe to me the economic conditions of the people who are being helped by this dental program.

B: They are way below the poverty line. Most of them are on SSI, which is a type of disability for people who have not worked enough and paid enough into the system to get regular Social Security disability. So they, most of them have very little resources at all.

T: I wonder if you could say something about the connection between mental health consumers specifically and why it is that they in particular might be in need of dental care.

B: Well that’s a big one. Actually I think that the medicine causes all kind of problems with the teeth. For one thing all of them dry the mouth out. And there’s any number of health issues that are related to the medication. But people want to have a good mouth, you know, and they want to be able to smile and not feel ashamed of smiling.  And it’s made a huge difference in people’s lives.

T: So mom you made a connection between the medication and the effect it has on people’s teeth. So you’re aware of that, and of course I know that you’re aware of that, and yet I also know that you take medication. Can you say anything more about that?

B: Well I have to. I have to.  Um, I don’t, I would be such a complete basket case if I didn’t have my medicine.  And I know it  does a lot of problems with my body, there’s risk to my kidneys  and my thyroid has already been damaged. Um. and there’s a lot of side effects and a lot of issues, but being crazy is no fun. It’s awful.

T: So there is this idea out there that people are sort of almost brainwashed by the pharmaceutical companies and doctors into taking these medications that they don’t actually need. How would you respond to that sentiment?

B: Well I think that there would have to be an alternative in place.  But I know myself, when I get sick I don’t know what I’m doing, or what’s going on, I’m really, really sick. But with the medicine, I mean I’m able to focus, you know. There might be some people who don’t need it as bad, I don’t know. But most  of the people I know are very severely mentally ill. Not the worried well.

T: And how do you make that distinction between those people you are saying are severely mentally ill, and the worried well, how are you drawing that distinction exactly?

B: I don’t know because I mostly see the people who are chronically mentally ill. I don’t know a lot of the people who are basically neurosis or that kind of thing.  So I’m not familiar with that.  I’m much more familiar with people that are really really sick. Oh all different kinds of people with all different kinds of problems, and people with pluses too. Hopefully they will get the kind of help they need. It just kind of depends, you know.

T: Right. What does it depend on?

B: Well you know how their mental illness is being taken care of. You know medicine has made a lot of difference in a lot of lives, and I know that a lot of people are now saying that people shouldn’t be taking them, but I don’t know what the alternative would be. You know. And at the same time I wouldn’t want to say that medicine is an absolute must, because I know there are some people that probably could function without medicine who are taking medicine. But I think they could be the exception rather than the rule for severely mentally ill people, is what I’m talking about.

T: What I would ask you is, I know people who would really not like this phrase that you’re using, severely mentally ill, and I think their idea is that characterizing people that way is kind of a  pessimistic way of looking at their issues and maybe takes away their hope. How would you respond to that?

B: Huh. Well I think there’s all kinds of different terminologies that all pretty much come down to the same thing. Like Shakespeare said a rose by any other name would smell as sweet. So I just think that no matter what words you would use it would develop into a negative anyway because there’s so much misunderstanding and misinterpretation by society at large about the mentally ill. The stigma is still there, it’s very strong, and the words that you decide to use are not going to make a significant amount of difference and it’s just too bad that we don’t have a better handle on things in this country with respect to mental illness.

T: So here’s a question for you, What is your… like you know that I also have a, quote unquote, severe mental illness and I struggle with these issues as well, certainly not to the extent that you have in terms of dealing with the system, but you know, still have struggled. And of course we’ve had conversations about this in the past… I wonder if you could describe to me what  your perception of my way of looking at this is. I’m just curious what you think I think about it.

B: I think it’s just different from what I’m accustomed to, and it’s good for me to hear about that side of it too, because I want to be as knowledgeable as I can, not only about my children but about other people as well…

T: Yea mom, but if you could take a shot at what you think my position is on these things, just be as honest as you can, I’m interested to know what you think.

B: Well I think about that, that maybe you think that people shouldn’t take medicine. But yet at the same time you say that you don’t necessarily think that, so…

T: So you think I think that people shouldn’t take medicine.

B: That’s kind of the impression I get.

T: Okay. Would you be surprised to know that there are people out there who think that I, um, I’m too much in favor of medication. Would that surprise you?

B: No. I know you’re pretty even keeled on things like that.  I mean you’d want me to take my medicine I think, because you know what the alternative is.

T: Do you have any questions for me?

B: Um. What do you think about what I’m doing?

T: I think it’s great. I think,  you know, as I’ve worked with homeless services and some things like that, I’ve definitely become aware of a need for dental care and it’s a need that’s especially, it’s not something that is real exciting for people to necessarily organize about, and yet it’s a really crucial need. So I actually think you’re doing something that’s, you know, more concretely maybe going to be able to help people than a lot of other projects that I see. So I definitely applaud that effort for sure.

On a Listserv for Psychosocial Approaches To Psychosis

The exchanges below arose out of discussion about the extent to which there is clear evidence that neuroleptic medications cause psychosis or contribute to ‘chronicity.’ Folks in the conversation, myself included, were often speaking from more than one subject position: practitioners, researchers and people with ‘lived experience.’  My own contributions, as you will see, are particularly inflected with strong affect that is somewhat embarrassing now with the distance of time. The portion shown below highlights a moment when the issues described above surface in a conversation ostensibly focused on psychiatric medication.

The folks in the discussion are:

Timothy (me)

Ron: his website

Nev: her blog

Mary: recovery story at Beyond Meds blog

Timothy

On a personal note: At the risk of having the suggestion made that I have “cognitive distortions” resulting from lived experience, as has been suggested earlier in this thread, let me offer this by way of thinking about what the “forest” might be in this regard.

As a person who has struggled with ongoing psychotic episodes beginning in adolescence that have continued to recur in spite of trying many different things (first episode I did not take any psychiatric drugs I might add) including: many different psychosocial approaches, dietary changes, abstinence from alcohol, acupuncture and chinese medicine, and a variety of different psychiatric drugs, as well as long periods off drugs, use of low dose intermittent drugs etc.

guess what? the episodes recur predictably.

I do not suggest anyone generalize my experience. i bring it up mostly to bring up one of the reasons i am in fact interested in real world matters (my mom by the way also deals with ongoing psychosis and has had to survive on disability benefits for most of her adult life)

I would strongly take issue with anyone who describes a single episode of something they call psychosis, especially in absence of any experience of psychiatric treatment-especially forced or otherwise attracting the attention of the police etc.-trying to generalize that experience to mine.

We are not talking apples and oranges here. we are talking apples and fire engines.

As to being in the trenches: I also spend some of my time working clinically, mostly with low income folks on state assistance.

My two cents, keep your eyes on the forest and the trees.

Ron

Hi Tim,

While I know everyone’s story is unique, I strongly disagree with your “apples versus fire engines” analogy.

While I know what I went through was in many ways “mild” I saw at the time, and see now in retrospect, that it would have been easy for me to “spin out” into much more severe problems had I not been lucky at various key points.  I think of Ron Bassman’s story, how he was basically getting along before his parent’s made what they thought was going to be a helpful intervention of encouraging him to go to a hospital, where everything turned very wrong.  That easily could have happened to me, I survived because of continued access to people who could see something possibly positive in my experiences, that wouldn’t have happened if I had been tricked into going into a hospital.

I also saw what my siblings went through.  It wasn’t something categorically different than what I went through, but there were things that tipped the balance into making problems more severe, harder to get out of.  I don’t think insisting that differences are categorical helps us understand people – instead in general I think it contributes to stigma, and the idea that the person and what they are going through isn’t understandable.

At the same time, we have to be attentive to differences, especially so we can figure out how to support recovery.  It is complex, but it isn’t “apples versus fire engines” at least in my opinion!

Timothy

I’ll let others on the list draw their own conclusions about whether you are trying to generalize your experience to others, including my own. I will also direct them to your website for a description of your experience that you have self diagnosed as psychotic after the fact, read my description of my experiences and decide for themselves what they think of my analogy.

My personal, and undoubtably biased opinion, is that the suggestion is extremely extremley personally offensive and illustrates your complete lack of understanding with regard to the heterogeniety of course, cause, severity, of these experiences. I wish more people in the csx community would call this issue out.

As regards your understanding of these matters in more ‘objective’ terms. I think this thread speaks for itself.  You clearly suggest you think you understand why things were different for you than me. My contention is that we don’t know. One thing is for sure, they were different, very very different.

I stand by my apples to fire engines analogy.

Nev

To jump in here, I think the issue of how to think and frame identity boundaries and self-representation is both fraught and extremely complex.  We have seen similar issues play out in the LGBTQ movement, and in various racial/ethnic contexts (notably Native American tribal membership).

In my mind, the risks and danger of the cooptation of narratives and identity is very “real”.  For the last half century (plus) c/s/x activists have fought for leadership and recognition as an oppressed but proud minority group, with the right to self-representation in policy, program delivery and research.  If “membership” in this group expands to the point that it no longer means anything, then these claims also mean little.

It is admittedly treacherous territory to judge other’s experiences.  My hope would be that individuals would and could recognize the danger of speaking for others, of assuming that their experiences are equivalent (even in a rough sense), and of fully recognizing that the c/s/x movement has historically always been led by individuals with extensive experience of the mental health system (typically including coerced and/or involuntary treatment, inpatient experiences and medication use), diagnosis, experienced discrimination, and often enduring and serious experiences of “madness” (psychosis, depression, mania, etc.).  I would personally add to this list consideration of the profoundly different experiences of already-marginalized individuals and those treated within the public system, on welfare/SSI/SSDI/Medicaid and so on.

To add to what Timothy said, I think there are relatively widespread and serious concerns with respect to individuals and activists “claiming” to have experienced undiagnosed, untreated “psychotic-like” experiences without rigorous qualification of how such experiences are in no way equivalent to those of individuals who have been diagnosed/labelled/’treated’ to say nothing of navigating enduring or longer-term madness.  By the same token, I personally–someone who has now been ‘in the system’ for 8 years, with on-going psychosis, and experience of multiple forms of voluntary, involuntary and self-initiated treatment, discrimination, etc.–always take pains to distinguish my experiences from those of individuals with, for example, severe, enduring thought disorder, unremitting delusions, voices that are active and highly distressing 24 hours a day/365 days a year to the point where the individual in question cannot understand what others are saying, etc.  I would never, ever claim to directly “understand” what this is like.

Word of the day:  humility about what we do and don’t know about science, meds and recovery, humility about the limitations of our own experiences, humility and awareness of the problem(s) of cooptation, (re)presentation and potential colonization of the narratives & identities of others.

Ron

Hi Nev and Tim,

I probably would have better stated my point by saying that I believe that Tim’s experience in some sense is not “apples versus fire trucks” different than mine, even while in another sense, it may be that different.

When we are dealing with complex realities, it usually turns out that the old Discordian maxim is true, “All statements are true in some sense, false in some sense, meaningless in some sense….”  Or as my dad would say, “It’s all the same only different.”

I agree with Nev and Tim that there can be problems with people thinking their experience is the same as someone else’s when there are important differences, but also very big problems with people seeing their experience as so different that they can’t understand the person, which can lead to seeing the person as not understandable or even not fully human.  Which is what happens all too often with “madness.”

I am very aware that in some sense I am a “peer” with others who have experienced psychotic episodes, and in many ways I’m not.  I had a very “light” form of the problems, and never experienced the “treatments” (the only mental health treatment I have received is therapy a decade after the psychotic experiences.)  I typically don’t claim the title of peer, even though I’ve been involved in consumer activism with MindFreedom for much longer than I’ve been a professional mental health worker.  (As some people have pointed out, peer is in some circles becoming another word for a mental patient, which isn’t too helpful either…..)

I think in many ways it is helpful when we notice that all of we humans are peers with each other, in some sense we are all more similar than different.  At the same time, we should not overlook the differences.

I agree humility is important, though it’s also important to not be so humble that one fails to speak important pieces of the truth.  It’s tricky to strike that balance, especially in email!  But I’m happy we are trying.

Mary

Hi all,

Like Ron, I was lucky enough to have an undiagnosed, untreated “psychotic-like” experience that transpired entirely outside the system.  And I agree with you: the experience was in no way equivalent to those of individuals who have been diagnosed, labeled and “treated.”  But it seems to me it misses the point to simply reject these “untreated” experiences as irrelevant.

According to Wikipedia, a certain Dr.  Semmelweis, age 28, faced a similar problem in 1846 in the Vienna General Hospital obstetrics department where he worked. Puerperal fever (“childbed fever”) was common in mid-19th-century hospitals and often fatal, with mortality at 10-35%.  As a result, “some women even preferred to give birth in the streets” rather than in the hospital’s obstetric clinics.  Young Dr.  Semmelweis discovered that if attending doctors and medical students were required to disinfect their hands, puerperal fever dropped to nearly zero.  He published a book of his findings in Etiology, Concept and Prophylaxis of Childbed Fever.

Unfortunately, this was before the development of the germ theory of disease.  Says Wikipedia:

“Despite various publications of results where hand-washing reduced mortality to below 1%, Semmelweis’s observations conflicted with the established scientific and medical opinions of the time and his ideas were rejected by the medical community.  Some doctors were offended at the suggestion that they should wash their hands and Semmelweis could offer no acceptable scientific explanation for his findings.  Semmelweis’s practice earned widespread acceptance only years after his death, when Louis Pasteur confirmed the germ theory and Joseph Lister, acting on the French microbiologist’s research, practiced and operated, using hygienic methods, with great success.  In 1865, Semmelweis was committed to an asylum, where he died at age 47 after being beaten by the guards, only 14 days after he was committed.”

There are now at least three of us in this group who have had undiagnosed and untreated “psychotic-like” experiences: Ron Unger, Paris Williams (http://tinyurl.com/nyw2ogu) and myself (http://tinyurl.com/nc88zf).

The question we seem to be wrestling with here is whether these “psychotic-like” experiences are comparable to “real” psychotic experiences that are diagnosed or labeled and treated, presumably in a psychiatric hospital or similar setting.  The rationale appears to be that “psychotic-like” experiences are not authoritatively diagnosed and treated simply because they are too mild and innocuous to be “real” psychoses; therefore they are in no way equivalent to the experience of individuals who have been diagnosed, labeled and treated.

It seems to me that our current knowledge of the causes and cure of mental illness is about the same as mid-nineteenth-century knowledge of the causes and cure of puerperal fever: in a word, abysmal.  True, we have an army of experts and many hospitals and a pharmaceutical industry devoted to the care of the mentally ill, but it requires carefully crafted laws, locked doors and barred windows to persuade patients to take advantage of them.  Many people prefer living on the streets.  There are stories of suicides and other distressing outcomes.

To see the true impact of all this, I try to imagine myself as a young pregnant woman in 1846 in Vienna, one of the most cultured cities in the world.  My time of delivery is near.  My husband and both our families want me to have the best and most modern treatment available, so instead of hiring a midwife they want me to go to the Vienna Hospital obstetrics clinic with scientific doctors attending.  But I know many women die in that clinic, and I’ve heard the stories about women having their babies in the street rather than go there.  What should I do?  What can I do?  Fortunately I have a friend who has been in that hospital and I go to her for advice.

She tells me to hide my labor pains when my day comes, and come to her house where she will have a midwife for me.  I do as she says, and the “sudden” birth and my recovery are uneventful.  I try to tell my family and friends that I’m alive and healthy because I didn’t go to the obstetrics clinic, but they all say nonsense, you would have had an easy delivery anywhere, you silly girl!  Stop trying to pretend you did something important!

I think the one truly to be pitied in this scenario is Dr.  Semmelweis himself, who died in disgrace because his peers could find no scientific explanation for his remarkable cures.  I hope the talented therapists among us who know what germs we carry on our scientific hands don’t meet a similar fate.  Right now, some of the cleanest hands seem to belong to Jaakko Seikkula in in Finland and Carina HÃ¥kansson in Sweden.  I hope we can hear what they are saying, even if our science can’t explain their success.

 Nev

I understand the sentiment behind thinking we all have more in common than not–nearly everyone has experienced losses, emotional upheavals, the deaths of loved ones, depression of some kind, etc.  That being said, I think we absolutely need to understand heterogeneity and difference as they play out in the context of privilege, sociopolitical identity and myriad political exigencies, first person experiential knowledge, and so on.

My point was certainly not that DSM diagnosis or treatment somehow “legitimates” mad experience–clearly it doesn’t.  Instead, these are important and perhaps even essential experiences in and of themselves when it comes to both sociopolitical claims, shared identity, and the sort of insight that fundamentally changes an individual’s ability to “relate” to the same experiences. Likewise, enduring, repeated psychosis–including very acute/florid forms–is, in my mind, fundamentally different from brief “psychotic-like” experiences.  Different both because of the “work” it forces the individual to do, and the insights vis-a-vis recovery, resilience, engagement etc. it engenders.  I have friends who have had to have cancerous moles removed and surely this is a far cry from ‘surviving’ chemotherapy and living with the threat of relapse, and the possibility of death.  To “coopt” or “claim” the experiences of those who have struggled, suffered and lived through and with raw & extreme & enduring madness is surely very problematic–as problematic as it would be for me, as a white woman, to claim that I understand the oppression and marginalization of black or Latino Americans in some more intimate “first person” way.  Of course I don’t, even though statistically it’s very like that I (and most white Americans) have some small percentage of African-American or Latino “blood.”

Likewise, I would absolutely never claim ‘shared experience’, as Ron Bassman noted, of long-term (10+ years) of institutionalization, of non-episodic and unremitting psychosis, homelessness in states of acute psychosis, etc. and believe that to do so would likewise be extremely problematic both politically and clinically.

Finally, although my point is unambiguously not to single out anyone on this list, I would suggest that individuals think very carefully about who their claims are actually benefiting (“hard core” user/sruvivors?) and what effects they have.  As Timothy has already pointed out, both of us–and many of my other friends–have repeatedly witnessed individuals with minor, undiagnosed, untreated “psychotic like” experiences, suggesting or implying that if the still-psychotic individual (us, in some cases) merely tried harder to engage, came to terms with past trauma, ate a gluten-free diet, stopped taking meds or never took meds, etc. that the psychosis would dissipate.  This is not only insulting–I won’t mince words about it–but deeply disempowering, devalues first person experience, and repeats some of the same sins of mainstream biopsychiatry.  Finally, the implications vis-a-vis equal representation are alarming.  I.e. if brief, psychotic like experiences, or a diagnosis of mild depression by a PCP are equivalent experiences, then there really is no problem with under-inclusion in academia, clinical settings, etc.   Nearly everyone’s a “consumer.”  Obviously, such positioning deeply undermines the claims of those of us who struggle with ongoing “disability” and sometimes frighteningly severe discrimination and stigma (within academic, policy and clinical settings) that we are under-represented and marginalized.

I actually wish that more in the c/s/x community were willing to speak out on this issue.