In just one week, Maria Bradshaw (mother of Toran Henry), Zoe Gilbert (sister of Finn Higgins), and the office of the Coronor have all received the same answer from Mental Health Services regarding the absence of adequate care of their loved ones, essentially “It was not our fault – no error on our part was made”.

This is the embedded mantra of NZ Mental Health Services.

Not only does the service never, ever admit liability, but the service also believes that any intervention they undertake with a client is an appropriate intervention, regardless of the outcome for the client. Arrogance, hubris, and delusions of grandeur come to mind (sorry, who are the sick ones here?).

Mental health services in NZ has become a dangerous and ultimately unaccountable “quango”, when even a Coronors Hearing cannot get a straight answer from the Clinical Director of Waitemata District Health Board Mental Health & Addiction Service Murray Patton regards liability over the Toran Henry case-  Pattons stock standard response when his service is in the firing line seems to always default to Seargent Schultz’ of Hogan’s Heroes fame “I know nothink!”

Another story for the archives of shame for NZ Mental health services:

http://www.nzherald.co.nz/health/news/article.cfm?c_id=204&objectid=10624594

It difficult to work with people you hate.

Having been in the system since 1994, I’m a veteran of the mad world, but I’m still anti-meds.  The psychiatrists are just dispensers of medication.  They don’t actually ask what’s being going on in mind at all.  I hate the system and I hate what they are meant to stand for.

My partner is still inside.  It’s strange after his depot injection, he seems to have gotton worse.  What the hell is going on?  I thought the drugs were meant to make you better?

Next pit stop looks far far away.

I just read about mental health advocacy, it seems you need to be on payroll supported by a PCT or trust to be able to call yourself an advocate.  Mental Health Law, is complex but not impossible.

I had invited myself to my partners meeting on Tuesday as an advocate, but I need to retract this, and arrive on the scene as “part of the care team”, which comprises of usually non-professional people, ie next of kin etc etc.  Note being as they’ve got nothing better to do, this is subject to change.  I think there are certain protocols within the system that remain unwritten, but usually known as routes out and into the system.

For example, who knows what the psych docs are planning?  Why isn’t this information communicated to the IMHA, if one has been appointed?  What right does the CNWL have in “forcing” medicine onto an individual when clearly it hasn’t been working.

Who decides who is well.  What is the benchmark of normality when we are all different?

The medication administered follows a simple but clear trajectory, this means every time you are “ill” the medication is “increased”.  It’s not rocket science Dr.

I’m wondering with my parter, I am in two minds about this, whether it is better to keep a low profile, not to attract the media and make sure his exit from hospital is low profile – ie half recovered, like the majority of clients.  Or secondly whether to batter them now with incompetency claims.

My involvement with him is turning into a paperwork battle.  I can not placate him at all.  There is nothing I can do whilst he is inside to get him the treatment that I would like, whilst they are shoving pills down his throat.  He is resisting everything on all counts and is completely frustrated with being incarcerated.

He get’s 2 x 15mins leave a day.  Plus 3 hours a week, after trying to request some leave.

Fact of the matter is.  No one is listening to him.

He has been annihilated.  Thats not a nice thing to do to anyone to deny them their existence.

I haven’t the time to weep.

May is Mental Health Awareness month and lime green is the ribbon color of springtime and hope.  Although May is Mental Health Awareness month, this is a year-round cause.  Mental health issues affect us all. They might include the stress of caregiving, a divorce, losing a loved one or of losing your job.  Maybe you have a diagnosis for depression or bipolar disorder.  Or you are addicted to alcohol or drugs. Depression oftentimes is a co-morbid/co-occurring condition alongside diseases such as cancer, diabetes or hypertension.  From teen suicide prevention to age-related mental disorders. From post-partum depression and anxiety-related insomnia, to surviving natural disaster and other trauma (PTSD).    Let’s say with ‘One Voice’ that “It’s OK!… to take care of your stress and mental health without stigma or shame….Pass it on!

May is Mental Health Awareness Month by giftsforawareness.com

Limeaidpartnership.com was a memorialization of Shannon Jacuzzi’s love for her sister.  Lime Aid seeks to partner with mental health organizations to raise awareness and funds for the cause.  Shannon was inspired by another sister, Nancy Brinker, who uses the ribbon color of pink through the Susan G. Komen Foundation to promote the importance of breast cancer awareness and research.

Butterfly Ribbon Mental Health Awareness Month by giftsforawareness.com

Mental Health Awareness and education is an important national and global issue. Since the brain is the control center of the body and 100% of us have a brain.  Truly as another mental health organization states it: “There is no health without mental health.”

Please help us spread the word by purchasing products that visually promote mental health awareness in your community.  GiftsForAwareness.Com in conjunction with LimeAidPartnership.Com are working together to help spread the importance of raising awareness for Mental Health causes.  A portion of the proceeds benefits LimeAidPartnerhip.Com.  Please visit LimeAidPartnership.com to learn more about their mission.

May – Mental Health Awareness Month by giftsforawareness.com

To see more Mental Health Awareness Month shirts and apparel, please visit our collection at GiftsForAwareness.Com and remember to take care of your stress.

Oh yes it does. I watched my mother try to get help for herself on several occasions, but she was not believed. She could have bled to death until her psychiatrist sent her to a friend of his who was a Gyn. He scheduled her for surgery the following week after meeting her because her hematocrit was getting dangerously low. What did they find when they did the hysterectomy? A uterus filled with fibroids. I guess those were “in her head” too.

My son is presently without health insurance (yes, I’m petrified) and having some unusual body aches. I took him to the doctor. Before she even touched him, she made the pronouncement that this was common with psychiatric disorders and that she didn’t really see or hear anything that would lead her to believe otherwise. I have to wonder how many folks with bipolar disorder have died because a doctor couldn’t see past their diagnosis.

I told her that I had never gone wrong trusting him when he tells me he is unwell. They do not see him in this office displaying hysterics, he is only there when he is very ill. I don’t remember the last time I was this angry. When we do get to the bottom of whatever is ailing him, rest assured, I will be writing this doctor a letter.

My blog has taken a back seat to my offline activities in the past few weeks.  This is pretty much the 11^th Hour in mental health advocacy due to all the budget cuts this year, and in the past week my brain has been fried by all the people coming out in droves to give emotionally charged accounts of their experiences with slashed mental health care funding: involuntary hospitalization, homelessness, jail sentences, being trapped in abusive homes, etc.

Hence these items are old news, but I still want to comment on them.  In the past month, some very interesting articles have hit the blogosphere, criticizing the racial and cultural disparities in the Western mental health care system.  Being the humorless, boner-kill feminist that I am, it should come as no surprise that gendered psychology is one of my major pet peeves, and one area in which I will absolutely concede that sexism truly harms men as much as women.  That people are able to further cite the inherent racism, cultural bias, and hegemony of the Western (specifically, American) psychological model comes as no surprise to me.  (Ironically, the World Health Organization has conducted studies suggesting persons with schizophrenia in developing countries, in which community support is more readily available than medication and professional therapy, have a significantly higher rate of recovery than those in the US.)

Being white, I can’t really speak to racial disparity in my own treatment, but gender bias, as for any woman with Borderline Personality Disorder, has certainly raised some issues.  I will never forget my friend telling me that in all the years he worked at MT State Hospital he never saw a man be diagnosed with Borderline Personality Disorder; only “the women who stood up to the staff.”  It’s anecdotal evidence but I still think it says something pretty horrifying about our mental health care system if even in the 21^st Century assertive women are believed to have some sort of “disorder.”

Which is not to say that I don’t have BPD.  I know I do.  In fact, I believe it goes back in my family at least two generations.  However this doesn’t negate the fact that health care professionals are sometimes unable to separate personality disorders from what they perceive to be personality flaws, and that they sometimes apply such diagnoses punitively.  (In fact it’s kind of a running joke in the mental health community that if you argue with your therapist you are about to be diagnosed as either “borderline” or “narcissistic.”)  I once heard a counselor say, verbatim, that, “If you want to punch your client you know they’re borderline!” which others at the table found pretty funny, though the humor was kind of lost on me.

Unfortunately, psychology is peculiar in that, unlike with “physical” illnesses, a preliminary diagnosis may not be regarded as a hypothetical cause of a person’s symptoms.  Sometimes a psychiatrist considers his or her initial speculation to be the final word in the diagnostic process, and because mental illnesses can’t be seen under a microscope (at least not yet) patients are generally helpless to dispute it.  (Just about everyone who has been diagnosed with a mental illness has been diagnosed with half a dozen others- with varying degrees of presumption- at some point.)  In other words, behave in a way that is contrary to a mental health professional’s concept of gender norms, or just plain piss him or her off, and a personality disorder can become a black mark on your medical record that will follow you for years.  Since mental health professionals generally regard people with Borderline Personality Disorder as confrontational and untreatable, what barriers to treatment does this create for women who are three times as likely to be diagnosed with BPD as men?

In reality, all that can be said for certain is that women are more often diagnosed with BPD, and mental illnesses in general, than their male counterparts.  (There are exceptions.  For example, men are more likely to be diagnosed with Narcissistic Personality Disorder than women.)  However, socialization and gender bias are seldom noted in these statistics, and the extent to which the “Macho Man” and “Good Girl” archetypes factor into the tendency to overlook mental illness in men and jump the diagnostic gun in women is rarely questioned.

Another area of contention for me personally, with regard to mental health treatment, is spirituality (though it’s such an inflammatory subject I rarely broach it away from my therapist’s couch).  In my opinion, “spirituality,” as it pertains to mainstream psychology, is a veritable cluster bomb of cultural bias.  Lily Tomlin said: “Why is it when we talk to God we are said to be praying, and when God talks to us we’re said to be schizophrenic?” And it’s not that far from the truth.  Many therapists insist that spirituality is necessary for recovery (tough luck, atheists!) just as long as it fits within their strictly Western, Abrahamic definition of it; which is to say there are “correct” supernatural experiences and “incorrect” ones, according to our dominant culture.

I can’t tell you how many people I’ve met with schizophrenia who insist they have seen and heard and felt their “guardian angels” interacting with them, while simultaneously insisting that all their encounters with evil entities were mere hallucinations.  On a personal level I can certainly understand the need to believe in one and not the other, but from a strictly psychological standpoint it seems to me that a positive hallucination is still a hallucination.  (Just because I thought it was really cool that time I was experiencing time in reverse doesn’t necessarily mean I wasn’t psychotic.)

Most of the time it doesn’t do any harm to let someone believe a positive experience is spiritual (and ultimately who’s to say what is beyond the physical world).  Unfortunately, despite the fact that spirituality (at least as I understand it) is a personal concept, too often mental health professionals, charged with maintaining objectivity, presume to draw a unilateral line between “mysticism and madness,” using white American society as the gold standard of supernatural experience.  Our dominant spiritual culture allows for angelic intervention, maybe a message from a deceased loved one or two, but that’s about it; whereas other belief systems are full of magick, ghosts, demons, visions, omens, spirit guides, altered states of consciousness, etc.  Of course, we could go around in circles forever about what is a “real” spiritual and/or supernatural experience and what is a delusion or hallucination, but among those that bring people joy, who gets to draw the line and where?  I’m something of a paranormal junkie but if what I perceive to be a supernatural experience has genuine personal meaning to me, even though it has a significant effect on my mental health, I just avoid the subject in therapy altogether.

(Actually, I’ve learned not to say anything to my psychologist unless it is a literal fact.  Therapists aren’t great with metaphor, either.)

Following on from the original letter to the advocacy charities and the inadequate response received, here is the latest. I will also be sending the original letter to my Trust’s Patient Council.

Hopefully I will not have any more two-posts-in-one-day-marathons for a while.

—

Dear Admin Woman Who Wrote to Me the Other Week

Re: Advocacy

Thank you for your letter dated 4 January in response to mine of 17 December. I must confess to feeling very disappointed by the surprisingly brief response of your advocate; however, I did take the advice given, and I discussed the matter with both my consultant and, again, my clinical psychologist [actually, I didn't discuss this with the consultant, as I don't see her until Wednesday, but they will never know. C absolutely assures me that it is not the consultant's decision, but his].

Both advise me that the length of treatment provided by the psychologist is decided upon by the psychologist himself and not the psychiatrist as your colleague believed. My psychologist unfortunately maintains his position of ceasing psychotherapy after the period previously specified (now 22 weeks from today), despite acknowledging that my illness should really be treated through long-term therapy. This contradictory position is a clear illustration of what seems to be unwillingness on the part of the Trust to prioritise and allocate adequate resources to the treatment of mental illness.

In light of the above, can I please again ask that your advocacy service looks at this case. I am very concerned that if treatment is halted prematurely that not only will I have failed to have made any significant progress, but that in fact my mental health will be seriously negatively affected. Arguably, given the number of difficult issues that therapy brings up for an individual, starting but not completing a full course of therapy is more damaging to a patient than receiving no treatment at all. I would be extremely grateful for your help, as I do not feel that I have the cognitive resources to fight this battle against what amounts to medical negligence myself.

To summarise, the decision to cut short my treatment has no proper basis in a clinical analysis of my condition. The clinical literature is very clear that borderline personality disorder requires more intensive and longer duration treatment than I am being offered. I would suggest that this is an illustration that the Trust is not appropriately prioritising the allocation of resources to the treatment of mental health difficulties. I would hope and expect that this is a matter of concern to Mindwise and look forward to hearing from you soon.

Thank you in advance.

Yours etc.

BipolarConnect.com is pretty hit or miss.  (Seriously, who funds these studies?  Antidepressants can make people “more extroverted and less neurotic?” Really, dumbass?!)  But its most recent poll of women with bipolar disorder, asking if they had ever considered not having children due to their illness, has piqued my interest because this is something that weighs heavily on my mind at times.  (In fact, I’ve even considered a hypothetical scenario in which medical science could test for mental illness in utero and whether or not I would carry a bipolar baby to term.)  Personally- my lack of functionality, relationship status, and financial security aside- my answer is yes; I have considered not having children because I have bipolar disorder; and with the poll holding steady at 75% of women saying yes and 25% saying no, clearly I’m not alone.

In fact, my emotional, gut reaction to the question is a resounding “yes.”  I’ve never seriously considered otherwise.  In principle, however, I’m a little more ambivalent on the subject.  Although the article that accompanied this poll was primarily focused on the risks of not taking mood stabilizers during pregnancy (hence the fact that the poll was directed entirely toward women… hopefully) it also touched on some other apprehensions bipolar women may have about motherhood, all of which veer toward some pretty ableist and antifeminist land mines- genetic discrimination, stigmatizing mental illness, violation of reproductive rights, classist healthcare pitfalls; all the biggies.

The first time I offended someone by saying I didn’t want to pass my illness on to a child, I was shocked.  Frankly I could not fathom an opposing viewpoint at the time.  As time goes by, however, and I become more involved in mental health activism, I may not share that viewpoint but I can at least see the logic in it.  If I don’t want to have children (at least partly) because I don’t want them to be bipolar, is that tantamount to saying people with bipolar disorder are better off never being born? God knows there have been plenty of times I’ve wished I hadn’t been.  I wasn’t even diagnosed until I was 26; and at 29 I feel like I’m only beginning to receive effective treatment.  Then again, my parents didn’t know what they were looking for.  I’m reasonably confident I could spot the warning signs in my children and get them into treatment much sooner, and thereby give them a much better chance at recovery.  That is, after all, the core of mental health activism: to establish early, effective, and proactive treatment of neurological disorders; and though it changes nothing I can see how people would wonder how I reconcile that ideology with my personal feelings on the subject.

As I’ve mentioned a few times, I have a love/hate relationship with NAMI.  All things considered, it’s an organization that has done many great things for persons with mental illness.  I’m not disputing that.  However, I can never endorse NAMI wholeheartedly because it has a few policies that just irritate me to no end.  (For one thing, NAMI refuses to acknowledge inpatient abuse and neglect, and insists the media and its members gloss over it.)

Like many non-profit organizations created to help “those poor sick people,” there is a subtle “white man’s burden” undertone to much of what NAMI does.  I believe this subtext is rooted in the fact that NAMI was not a mental health organization formed by persons with mental illness, but by their family members.  It may seem well and good to the general public, but for those receiving services from NAMI it’s the difference between approaching mental illness as the issue and approaching- at least partly- persons with mental illness as the issue.  In my opinion this mindset is exemplified by the fact that NAMI, and some other mental health organizations, insist on labeling persons with mental illness as “consumers.”  I have to contend with this term at least twice a month at council meetings, when everyone is asked to introduce him or herself, state his or her role in the organization, and then denote him or herself as a “consumer,” “secondary consumer,” (a family member of someone with a mental illness) a provider, or two or more of the above.  Though I’ve long since abandoned the habit of choking on the word when the talking stick is passed to me, it still makes me wince every time I hear it.

I have two problems with the “consumer” label (aside from the fact that no one outside of the mental health movement has any freakin’ idea what it means).  For one thing, it stems from a culture of “helping” those with illnesses and disabilities rather than empowering them to make their own decisions.  No one- literally, no one- has ever asked me what I prefer to be called.  I just have to be the one gadfly in the room who insists on identifying myself in person-first terms.

Secondly, the term itself bothers me.  To me, “consumer” refers to someone who purchases goods and services- perhaps necessary, perhaps frivolous, perhaps to the point of excess.  Persons with mental illness don’t “shop” for their treatment.  They fight a life-or-death battle with the health care system to receive the services they need to survive, and all too often they lose.

Glenn Close’s cloying PSA about her sister’s struggle with bipolar disorder has received mixed reviews from mental health advocates.  (In her defense, I think the general public is struggling with the “people with mental illness are people, too” concept and aren’t really prepared for any cold hard facts about mental illness, particularly as it concerns those in poverty.)

Of course, no discussion about Glenn Close and mental illness would be complete without referencing her iconic character in Fatal Attraction, who, like me, as EVERY mental health professional with all the sensitivity of a brick has felt the need to point out, had borderline personality disorder.  The attention Close has recently attracted to mental health issues has naturally raised questions about her ability to reconcile her role in the movie with her current anti-stigma efforts.  According to NAMI, Close acknowledges the negative impact of her role, but also defends the integrity of her character.

I personally don’t feel like Glenn Close owes anyone an apology, or even an explanation, for her role in Fatal Attraction, and frankly I’m glad she isn’t willing to cave to whatever pressure there might be to regret any stigma she might have caused.  I do think the morons who thought it gave me any perspective on my illness or benefited me in any way to compare me to one of the most notorious characters in cinematic history owe me an apology.  (Honestly, it actually wouldn’t surprise me if there were psychiatrists unscrupulous enough to use, say, American Psycho as a diagnostic reference for their patients, but I suspect that would at least be frowned upon.)  Obviously Fatal Attraction portrayed mental illness in a very negative light, but it was also well written and well acted, and though the extreme manifestation of Alex Forrest’s illness isn’t true for most persons with BPD, it was true for that particular character.

I personally don’t believe mental health activists can and should ever completely eradicate all negative depictions of mental illness in fiction, simply because they are just as real as the positive.  There are persons with mental illness who commit violent crimes, because of their mental illness, and no amount of stigma busting can ever change that.  For me, the real issue isn’t if a movie or TV show portrays a person with mental illness as dangerous or violent, but whether a fictional account of mental illness is provocative for a valid artistic reason or just “insanity porn” for money’s sake.

Another thing to consider is that positive portrayals of mental illness do their own kind of harm.  Ableism is incredibly (no pun intended) bipolar, and not only manifests as a presumption of what people can’t accomplish despite their illness or condition but a presumption of what they can.  In my experience the people who most enthusiastically argue that, “Mental illnesses are very treatable,” don’t actually suffer from them, and are unaware of the complexities of mental health treatment beyond the “cure-all miracle pills” the pharmaceutical companies hawk on TV commercials.  When real-life treatment of mental illness proves much more complicated- due to financial constraints, lack of support from friends and family, co-occurring substance abuse, and so on- such people may weigh an individual’s recovery against the sort of “triumph over mental illness” that simply isn’t realistic for anyone whose life isn’t otherwise perfect.   I think the ultimate goal of stigma busting isn’t to censor negative stereotypes of mental illness or manipulate the general public with excessively optimistic expectations of recovery but to advocate for characters with mental illness that are realistic, human, and, above all, complete individuals whose psychiatric disorders do not totally define them.

Well, I’m back from the State NAMI Conference and, though I’m still processing the whole experience, it’s a mountain I’m really glad I decided to climb, as I am now infinitely more confident that I can attend events like it in the future without facing an inevitable psychological crisis.  I made it through, I stayed “safe” (I didn’t take too many benzos or injure myself), I made some important contacts, and I even looked halfway decent in my Halloween costume if I may say so myself.  All things considered, it was a very beneficial- if utterly draining- experience.

First of all, Fate- God/dess, the Cosmos, whatever- intervened at the last minute so that I didn’t have to visit the State Hospital after all (although I think the fact that this conference was important enough to me that I was even willing to do so counts for a lot).  Instead I got to attend the SAA Summit, which was a much better fit for where I am in my advocacy efforts, anyway.

What’s an SAA Summit?  Well, in Montana each county has it’s own “Local Advisory Council” (LAC) made up of mental health and co-occurring clients, providers, and- hopefully- public officials and representatives of law enforcement who brainstorm about public policy and try to improve the level of care in their community.  Each LAC sends one or two representatives (a position for which I was recently elected) to its regional “Service Area Authority” (SAA), which, in turn, sends one or two representatives to the statewide SAA Summit, where the fate of bills related to mental health care are ultimately decided.

Attending the summit was equally interesting and irritating- interesting because it was a higher tier in the legislative process; irritating because the SAA’s have been trying to move the same damned bills forward for years and have somehow never succeeded.  Finally the moderator basically told each SAA to pick one issue, go home and draft a bill that moved and even made some kind of sense to the voting public, and come back in a few months with something the Legislature could actually use.

She also cautioned the people at the table not to divert funding to community services to the extent that the State Hospital suffers, which of course is exactly what I’ve been saying for three years, but this brought the ire of some (which, in turn, set my teeth on edge) who insisted that the state will always provide for the hospital and (effectively) that we should just let the census overflow again to prove to the Governor that advocates have been right about the need for community services all along (never mind all the people who would have to die or be permanently traumatized in order to prove that point, or the fact that the only reason the census at Warm Springs is down is because Montana’s criminal justice system has received a sharp increase in funding and many of the would-be patients have simply been diverted to jail).  Sigh.

The conference was far more encouraging.   The Shut Up Sisters were outstanding, and were able to captivate my attention to the point I forgot how long I was sitting in an extremely crowded room, which is not an easy feat (although it probably bears mentioning that I learned from the last conference I attended to sit in an aisle seat or not sit at all. Those narrow chairs pushed seamlessly together cram me more tightly between two people than I could ever stand to be, which was probably what triggered my crisis the last time.  More on that later.)  To anyone who hasn’t heard of them, these are two sisters- one of whom has a daughter with bipolar disorder and one who has a daughter with Asperger’s Syndrome- who co-authored a book titled: Shut Up About Your Perfect Kid about their experiences raising children with disabilities.  Although I’m sure some people coming from a neurotypical* mindset and even some persons with disabilities would be offended by their humor, it was obvious to me by the way they described their initial revelations about their daughters’ respective illnesses that their ability to manage their terror and pain with levity was sincere.

Montana’s own Wendy Parciak, author of Requiem for Locusts (how freakin’ cool is that title!) was equally compelling in a different way.  She gave a presentation called “Writing your way towards sanity: A sibling’s tale” about how she was able to translate her sister’s battle with profound psychosis as the result of a genetic disorder called Velocardiofacial Syndrome (VCFS) into a novel that was both engaging and truthful.

The NAMI In Our Own Voice presentation was very… well… NAMI, but I’m still willing to give it a try.  It will be interesting to see if I can compress and sanitize my “voice” enough to effectively participate in the program, but looking back over my previous blog entries I would say I’ve made significant progress.  (Oh, I’m still angry! I always will be.  But I’m on just the right medication and I’m just jaded enough to channel that anger effectively, without getting so incensed when I think I’m being ignored or belittled, or when policies I’ve championed die on the table.)  The next IOOV training seminar is scheduled for next spring, so I guess I’ll find out then if it’s a good fit.

I got to visit my friend C.M. (the advocate who investigated my complaints against the hospital last year) and though we didn’t get to talk about Warm Springs as much as either of us would have liked, I must say there are very few people who can read the explicit details of your stay, and your experience of sexual violence, at a mental hospital and still make you feel comfortable enough to chat like old friends; and he’s just that kind of person.  I also struck up a conversation with a member of the Montana Coalition Against Domestic and Sexual Violence and discovered a clerical error was indeed responsible for the fact that I’ve never heard back from the organization since I joined it several months ago.  (I thought paying a membership fee and not even being signed up for so much as an email newsletter was a bit peculiar!)  So hopefully the next time there’s a MCADSV conference I will know about it in time to actually attend it!

I also got a huge wad of literature to read from various booths, and a few things to Google when I get around to it.  On the way home I also had some very interesting discussions with a co-occurring counselor I know from the LAC.  At one point she asked me if I planned to go back to work, and for the first time (still feeling optimistic from the conference, I suppose) I just flat out said, “If I do, that’s fine, but not if it interferes with my ability to do things like this.  It may be controversial, but if SSDI covers my expenses so I can be a full time advocate I think it’s worth it.”  Without hesitation she said, “I think that’s a good use of my tax dollars.”  It was a refreshingly supportive statement, especially with my psych nurse riding my ass these past few months.  Being a high functioning person with mental illness is a double-edged sword, and reactions run the gamut from, “You have such insight into your illness and so much to offer,” to, “You’re obviously doing just fine; get a job.”

Unfortunately, the conversation took a nosedive when the subject of religion came up (but what conversation doesn’t?) She asked me if I still have faith even though I’m no longer going to church.  I choked and told her I was “agnostic,” although in retrospect I think “spiritual” would have been more accurate.  It’s probably a moot point, anyway, because one is bound to evoke the same reaction as the other.

In all honesty I’ve struggled for quite a while with how to label myself.  I can always find something with which I disagree about a religion, which makes it impossible for me to fully claim any particular religious identity.  (Which is, incidentally, fairly typical of borderline personality disorder.)  Recently I happened across the term “Goddessian” to denote women’s spirituality, which seems more like where I truly am in my spiritual journey, and is a broad umbrella term I could live with as long as no one tries to institutionalize it.  (One can only hope.)

The only time I really felt like I was losing control was when I was at the banquet on Thursday evening.  The more it dragged on, not only did I get really bored, but I also realized how much I had actually blacked out the last time I attended the State Conference.  That was by far the worst disassociative experience I’ve ever had.  I have one flash of sitting at the banquet table and another flash of going to the restroom, and the next thing I remember I was home… the next day.  What the hell happened in that amount of time?  I know I somehow got to my room, went to sleep, woke up, got dressed, attended the rest of the conference, and- this is the really disturbing thing- drove myself home afterward.  But I’m curious: did anyone notice?  Did I go on speaking and acting normally?  I assume so; since no one commented afterward that I seemed really “out of it,” but the more I obsessed over the idea this time, the more it began to trouble me that I couldn’t retrace any of my steps.  However, I managed to avoid any self-fulfilling prophecy and by Friday morning I realized I was going to make it through the entire conference.  All things considered, it was a few days very well spent.

*I recently encountered the term “neurotypical” (as opposed to “normal”) on Feminists With Disabilities and fell in love with it instantly.  (I’ve also kind of been mulling over the term “psychologically privileged,” though I don’t know if anyone has coined it yet.)  If there’s one thing I’ve learned from the Internet it’s that you can always count on feminist bloggers to stay on top of the latest politically correct/person-first language.

Invisible Illness Awareness Week has come and gone, but the battle still rages in my own life.  I’ve been seeing a psychiatric nurse practitioner for a few months now (there is a major shortage of psychiatrists in MT so most of us end up seeing general practitioners or nurse practitioners to get our psych meds adjusted) and though at first I appreciated her candor, now I just find her opinions to be presumptuous and condescending, to put it nicely.

It’s been fair enough for her to say I haven’t challenged myself enough lately.  It’s probably true.  Though I’ve experienced a lot of internal growth in the past year I have taken very few social risks, so in that respect I will concede she is correct.  However, the more she tries to hammer that nail into my head the more the subtext seems to be that I am not sick at all, and the more I revisit our past appointments the more it grates on my nerves.

Basically she took one look at me the first time we met and decided I’m not really disabled (as in legally).  Frankly I don’t think she even believes I’m bipolar.  She didn’t even want to hear what my diagnoses were when I told her my psychiatric history (which should have been a huge red flag in retrospect) and she insists I’m just unconsciously sabotaging myself because I want to be on disability.  In fact, her exact words during that first appointment were: “How much of staying sick was you not wanting to go back to your job?”

“Staying sick.” Like it was a choice.  It’s the kind of ignorant bullshit I generally expect from the average person but not from a mental health professional (although it certainly wouldn’t be the first time).

When I tried to tell her how traumatic my experience at the hospital was, and that I spent at least a year recovering from my so-called “treatment” before I could even begin to regain my mental health… let’s just say I can sense when someone doesn’t believe me, and I’ve met my share of mental health professionals who think I’m making things up.  She finally tap-danced on my last nerve on Wednesday when she fed me the “the patients I see can’t even function” line, which would imply I am either not really bipolar or not bipolar enough.

After our last appointment she asked me if I wanted to schedule an hour next time so we could “talk more.”  I told her a half hour was fine but what I really felt like saying was that a half hour of listening to her ableist crap was more than enough.  I already have a psychologist and if he doesn’t think I can go back to work it should be none of her business.  Her job is to adjust my medication and nothing more, and if people who are competent at prescribing psych meds weren’t so few and far between in this state I wouldn’t come back to see her at all.

I certainly won’t deny that I rank somewhere in the “high functioning” category, and I know I come across as being far less ill than I am.  I’m young and physically healthy, and I speak well.  I have a nice social gloss.  I’ve also had 16 years to learn how to hide my symptoms so I can blend in with the general public.  Most persons with mental illness wear a mask to the outside world if and when they can; so I understand why people in general don’t think I “look” bipolar- whatever that means- but I guess I expect those who have been specifically trained to diagnose and treat mental illness to see past the façade.  I’m weird that way.

There’s also a bigger picture here.  I think this woman not only presumes too much about her role in my treatment but she has a very myopic view of what it would take for me to be successful and fulfilled in my life.  I enjoyed being a professional cake decorator, at least part of the time, but I really believe in what I am doing in mental health advocacy, whether or not it ever leads to a paying position.

For three years people have been telling me to let it go and stop dwelling on my hospitalization, and though I know their intentions are often good; I also think they are part of the problem.  People get committed to hellhole state hospitals like Warm Springs, and once they are stabilized they go back to their ordinary lives and pretend it never happened, perhaps because they are ashamed, or perhaps because they have been railroaded by some self-righteous mental health professional who refuses to validate their experiences.  Either way, nothing changes and the people who run these sorry excuses for treatment facilities are never held accountable.

My psychologist told me the other day that every one of his patients who has ever been to MT State Hospital has a horror story just like mine.  I personally have never met a woman who has been a patient there who wasn’t sexually assaulted.  How could it all be in my head if all these people with no connection to each other say the same thing?  Someone needs to fight back, and I feel like I’m in a position to do so.  I may not have really hit my stride yet, but I know in my bones this is what I am called to do.

After attending the annual meeting of the Depression and Bipolar Support Alliance annual conference last year (2008) and hearing a talk by Stephen Propst on person centered language – I’ve been doing some thinking.  Does my son have bipolar disorder or is he bipolar? To the casual listener it doesn’t sound like too terribly much of a difference now does it? However, just scratch the surface of the meaning of words and it becomes immediately obvious. He’s not bipolar – he’s Chuck! Chuck has bipolar disorder. He also has red hair, freckles, a winning smile, quick wit, intelligence, musical talent and is a pretty good cook. All of these things make up who he is, not any one component describes him exactly because he is much more complicated than that. We are all more complicated than that.

Ever had anyone find out something about you that they did not know before – say, in spite of knowing you for a very long time? They sound surprised to find out that you speak fluent Mandarin? Or that you are a member of Mensa? Or that you are a killer seamstress? When this happens don’t you feel just a little offended because they look at you like you’re from another planet as if they didn’t know you? As if just by not having that one piece of the puzzle they act as though they’ve been fooled? In general humans are not that easy to nail down. We are complex, we are able to learn and grow. I am not defined by my job. I am not defined by my religion. If I tell you something about me that you did not know before, you may think, “Aha! I knew it.”  But the truth is, you don’t.

I’ve heard people say – “oh bipolars do this, bipolars are always emotional or get angry easily” or whatever. I appreciate that on one level we are trying to understand. But on another level, we are trying to make it easier for ourselves. If I can quickly define you I can relax and act on my preconceived notions, even if they are wrong.

It is only one piece of the puzzle, by trying to nail down my son with a diagnosis, you limit him and you limit yourself  – and it’s also, simply put, incomplete and perhaps even inaccurate. We cheat ourselves and everyone else by that kind of thinking.

Language matters. Stigma is real.

Last night my daughter sent me a text to tell me to tune in to NPR to listen to the Fred Friendly Seminar on Mental Health Care – I eventually had to turn it off. I already know the reality. Basically, mental health care administration in this country sucks.

The panel of experts (two of whom had schizophrenia – a lawyer and a psychologist) traced two hypothetical mental health consumers who entered “the system” – I found myself getting anxious just listening to the travails of people who needed help.

Some of this I witnessed as a young woman trying to find help for my mother after the state mental health hospital was disbanded and inmates (yes, that’s what they were called) were remanded to community mental health centers. Most states were woefully unprepared for this influx of a population that required extensive services.  Just finding a bed was a challenge. When my mother would occasionally decide that her meds were just fine, thank you very much, and the inevitable delusions and hallucinations began, we could pack a bag, get in the car and drive on over to Milledgeville with a brief phone call saying we were bringing her over. After the state hospital services were greatly reduced this was no longer an option – just finding a bed within the county was a nightmare. Then follow-up with an overburdened county psychiatrist who now had more patients who were dismissed before they were ready to be released so the next truly ill individual could find a bed was less than adequate. This was frustrating at best but actually dangerous. It remains to be so.

Most counties do not have the tax money which provides facilities, well-trained and empathetic personnel, and wrap-around services. In Georgia, the state was threatened with takeover by the feds if they didn’t clean it up and quick. Why? Because of the number of cases of abuse and out and out neglect. Dorthea Dix would be mortified.

I acknowledge that this is a complex question. But really, what we are talking about here is a human rights issue. Just because someone has a mental illness does not mean that they are sub-human. Sadly, this is just how many are treated.

When Chuck was a baby, he had frequent ear infections. I wore a path to the pediatrician’s office. One morning after having been up all night, we arrived at the doctor’s office, and finally we were taken to the exam room. The doc came in took a look at his ears and said, “yep, another ear infection.” Bleary eyed I said that I kept thinking that when I brought him in, he, the doc, would tell me that I was wrong. He said something I’ll never forget. “You know your child better than I do and I trust my moms to tell me what I need to know.” We no longer see this doctor because our insurance changed, but I sent him a note a couple of years ago to thank him for saying that to me. It made all the difference in getting my son the help he needed. I know what I know about my child. I may not know the cause, I may not know the cure, but I know when he needs help and I know when something else needs to be done in his treatment.

I’m not a recalcitrant parent. I listen to what the doctors and therapists tell me and weigh it against what I know and what I am comfortable with. I also have learned to trust my instincts on whether I am talking to the right clinician for my son and even more importantly, I’ve learned to trust his. That’s tricky given the mercurial nature of bipolar disorder. I am fortunate, he is fortunate that we have worked out a relationship that allows this to be. Sometimes I override his objections. But he has to be pretty ill for me to do that.  I’ll post more soon on forging a “therapeutic alliance” with your child.

It is indeed heartening to see HDC head Ron Patterson and his crew finally entering  into the spirit of the legitimate “naming and shaming” of practitioners who breach fundamental standards of best practice with vulnerable clients.

First, there was the Palmerston North Medical Centre:

http://tvnz.co.nz/health-news/palms-doctors-named-and-shamed-2961691

then there was the Counsellor who was fond of sleeping with his clients who were suffering from sexual abuse issues:

http://www.stuff.co.nz/national/health/2845236/Counsellor-seen-as-serious-risk-to-public

and now we have the Psychiatric nurse and former Higher Ground Alcohol & Drug Centre supervisor who was struck off for having over 200 hard core images of child porn on his computer:

http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10597489

It would appear that Mr Patterson has at long last realised just how devastatingly effective his role can be when he shines a long overdue torch into the recesses of the mental health and clinical care industries. In doing so, the health and safety of the mental health consumer is enhanced, as is the accountability of practitioners within the industry.

This outcome has got to be a good one.

http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10566068

Onely salutes Dr. Gertrude Steuernagel, a beloved and progressive women’s studies and political science professor at Kent State in Ohio. Steuernagel is an accomplished and outspoken and feminist and autism advocate. As she raised her adored son Sky, who is autistic, she also found time to make an impact in both the women’s movement and in mental health advocacy–all while Onely.

Tragically, last week Steuernagel was severely beaten by Sky.  Autism does not/not cause violence in and of itself, but the resulting sensory overload and frustration of not being able to communicate can cause sufferers to lash out, and Sky had other neurological challenges as well that may have contributed to the assault. He didn’t know what he was doing.  Steuernagel knew the challenges associated with caring for Sky, but she also knew the joys, as she describes in this amazing essay. She is truly a Great Onely, and we send our strongest well-wishes out to her numerous family and friends.

–CC

P.S. Kudos to fox8 news. Of almost an entire page of news stories on Google a couple days after the incident, their story was the only one that mentioned the Sky’s autism.  The other articles, by their passive omission of this fact, allowed Sky to be portrayed as a crazed mother-beating criminal instead of a sweet boy with brain dysfunctions. That is irresponsible journalism at best, and immoral journalism at worst.  Granted, the fox8 news article doesn’t caveat their mention of autism with “this is not necessarily the whole cause of the incident,” which would have been nice, in order to avoid giving the impression of all autistic people as violent–but it’s still better than not mentioning it at all.

http://psychwatch.blogspot.com/

www.lakealicehospital.com

Invitation to Exhibition

A documentary-style human rights exhibition on mental health is showing at the TesltraClear Pacific Centre 20-23 Dec 2008.

Special free viewing of this educational exhibit has been made available in South Auckland for Pacific and Maori organisations, people working in government agencies, the community, as well as interested public.

This is a rare opportunity to look into the big questions surrounding unexplained violence and suicide, depression, behavioural and other mental health issues…  Interviews with more than 160 doctors, lawyers, educators, parents and other experts in the 14 documentaries and display panels reveal historical and contemporary information that anyone interested in children and our future, needs to see.

We look forward to seeing you there.  FREE Admission.

(Please note that there is a R18 restriction on the documentaries)                        

Steve Green
Executive Director
Citizens Commission on Human Rights
PO Box 5257
Wellesley St
Auckland
Ph/Fax: (09) 580 0060
0800 777 555
www.cchr.org.nz

cchr@xtra.co..nz

I recently had cause to write to a WDHB Psychiatrist, and the Team Leader of the WDHB Mental Health Consumer Liaison Team (you know, the team that is supposed to represent and advocate the interests of mental health clients to the WDHB), to seek some information regarding support services for mental health clients.

This is the response I received to my email from the WDHB:

Your message To: Ana Sokratov (WDHB) Cc: Camelia Ichim (WDHB) Subject: Consumer Services & Mental Health Groups Sent: Wed, 12 Nov 2008 13:38:27 +1300 was deleted without being read on Thu, 27 Nov 2008 18:40:04 +1300

Says it all really, doesn’t it?

Steve Taylor

Psychwatch NZ have received a formal request to publish the following:

“We are looking for a QC in Auckland who would be prepared to take a case against the Health & Disability Commission regarding our experience with Mental Health services, and the subsequent HDC investigation. Could you please publish this request on your website.”

Yes, Psychwatch NZ is happy to publish this request – so if you are a QC who would like to explore the possibility oif taking this case, please email 24-7@maxnet.co.nz to secure the contact details of the above family.

Steve Taylor