Monthly Archives: August 2013

On activism, and nature and nurture

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Trigger Warnings:  self-harm, violence, bullying, psychiatric abuse, ABA, homelessness

In the last year, through Icarus and also through spending way too much time browsing the Internet instead of doing homework, I’ve learned a lot about the concepts of privilege and oppression.  Admittedly, I didn’t understand much about this until this past year; although I was involved in queer activism in 2008-2009, my focus was on convincing people to be nicer to queer people, which is a somewhat overlapping yet distinct issue from systematic oppression.

Learning about these things has been comforting and enlightening for me, because it’s made me realize just how much of my mental health issues are a result of interaction with the psych system itself.  I know; that is the opposite of what it’s supposed to do.  But I think most people would agree, including many people who work for it, that the American psych system is pretty fucked up.

I have low self-esteem because throughout my life, whenever I’ve gone to a mental health professional with any concern, regardless of how warranted my emotions were and regardless of how much trauma I was going through, I was the one who was blamed.  It was always an internal, biological problem, never a societal problem…

Age 13:  I am severely bullied for being neurodivergent and Pagan.  Mom catches me in the act of trying to slit my wrists with broken glass animals.  She feels in over her head and sends me to a therapist, who rather than validating that my bullies are assholes, diagnoses me with ADD and bipolar.  Because clearly, I’m just being weird and oversensitive, and therefore deserve to be bullied.  She also refers me to a psychiatrist, who prescribes me my first stimulant and mood stabilizer.  These come with a number of nasty side-effects including anxiety, chronic pain, hypothyroidism, insomnia, headaches, dizziness, dry mouth, hair loss, and incontinence.  A number of the side-effects though, despite starting precisely when I started the meds and despite them being common side-effects of these particular medications, were also blamed on me:  specifically my neurotransmitters, body, lifestyle, and personality.

Age 16:  I am still depressed.  The bullying is still a problem; my medication has caused me to gain weight, which has given them a new thing to tease me about, and they’re also starting to wonder why I haven’t dated anyone yet.  It has also since extended to my teachers as well, who refuse to teach to my learning style and tease me for asking more questions than the other students.  A diagnosis of LD is added for my brain not being compliant with the primarily-auditory and verbal teaching style of the school, and a diagnosis of autism is added for my “lack of age-appropriate relationships” and social awkwardness that is clearly the cause of the bullying (not, again, that the bullies are assholes or anything).  I get started on Applied Behavioral Analysis, a behavior modification program for autistic people.  It is based on the principles of behaviorism (punishment and reward), and you get punished for displaying “autistic” behaviors (like hand flapping or not making enough eye contact) and rewarded for displaying “appropriate” social behaviors (like making small talk and making eye contact constantly).

Age 25:  I seek therapy for trauma related to an abusive relationship and homelessness.   I receive a diagnosis of borderline personality disorder, because of my “pattern of dysfunctional relationships”.  The homelessness is brushed off as being a result of poor planning on my part.

It is now my default to blame myself; no matter what happens, if I am upset, it is a mood swing, a chemical problem, time to see the doctor and get a new medication.  I do not allow myself to feel angry, because I’ve been told time and time again that the world is fine just the way it is, there is clearly nothing to feel angry about.  I also have very little models of positive uses of anger (my parents both have anger management problems, and would take their anger out on me, which was frightening; it made it hard for me to want to acknowledge my own anger when for many years I thought it could only hurt people.)  So whatever anger I may feel is generally internalized, and I get depressed and self-hating, and sometimes this prevents me from functioning at all.

I also realize now though that it is much more complicated than that…

Nature and nurture are not mutually exclusive.  In theory, this is well-accepted (it is one of the first things they teach in Psychology 101), but in practice, it isn’t always acknowledged.  Mental health professionals and psychology researchers would just assume always blame the brain.  To social justice activists and sociologists, it is always a faceless and nameless “society”.  In reality though, society impacts the brain, and our mental health impacts society.  Society, after all, is nothing more than a culmination of individuals.

As such, while seeking therapy and working through self-help books and doing whatever else to take care of myself can and does change the world (I am part of the world, so the more equipped I am to reach my personal full potential, the better off the world is for it), participating in activist movements likewise helps me as much as it helps society.  No matter how much I work on my own resilience and stability, if I must continue to live in an unjust and cruel world, my mental health will continue to suffer.

Participating in activism has always been emotionally healing for me, though I am only just now beginning to understand why.  It is empowering to know that my anger at injustices can be channeled into a positive passion for change, rather than be directed unfairly at innocent bystanders, or fester inside of me until it manifests into crippling depression.  Activists throughout history were angry about one thing or another, and it motivated them to do something about the problem.

However, I do feel limited at times in my activist work, because of certain values and lifestyle preferences.  For one, because of the experiences I’ve had with bullying (and witnessing, time and time again, a cycle in which the bullied would become the bullies), I am a pacifist:  I vowed around age 15 to try my best to never hurt anyone, with my words or tone or hands or anything else, even if they hurt me first.  I vowed that the cycle of violence and abuse would stop with me.  And if I do hurt someone accidentally and they point this out to me, because of course I’m not perfect and everyone has different triggers and boundaries, I apologize and avoid doing the same thing to that person again in the future.

Limitation #2:  I have a technology addiction, because of which I have strict limits on my Internet use of three hours daily.  My participation in online activism is generally limited to this blog and sharing/posting things on Facebook.  Some days, days when the full three hours need to be spent say on homework or internship applications, I don’t have time even for that.

Limitation #3:  I cannot risk arrest.  This is not due to moral qualms, but because anything but an absolutely spotless background check would bar me from a career doing…anything that I’d want to do.

However, there are things I can do…

write and post and read, here and on Facebook

attend peaceful protests and rallies, that are neither violent nor law-breaking

donate to causes I care about, as I am able

make art, since art is a blueprint for how we wish to see ourselves and the world, and any successful project has a blueprint

share myself and my story, as honestly and openly as possible while still keeping safe from stigma.  People are more likely to treat others who are different from them with respect if they know and understand members of these groups, see them as more than abstractions or statistics, and recognize that they’re not all that different from themselves.  It’s called developing empathy, and with empathy comes compassion.

answer questions, clearly and patiently, no matter how ridiculous the questions may be.  So much cruelty comes from simple ignorance, which is possible to resolve, provided we are willing to become teachers.  Like teaching any other subject, it’s important to recognize that people are unlikely to learn without clear explanations made patiently and kindly.

help to form diverse local communities, which may not seem relevant to activism at first glance, but this relates to the above point about empathy:  modern society is often very isolated, and when people are isolated from each other (particularly from others who are different from themselves), it is harder to have empathy and therefore harder to have compassion.  Also, it is near-impossible for anyone (no matter how skilled or resourceful or dedicated) to make a global difference by themselves:  communities, on the other hand, are able to collaborate and mobilize.  Even something so simple and seemingly small as organizing a public board game or craft night can ultimately make a difference.

continue to work on myself, so that as Ghandi famously said, I can “Be the change [I] wish to see in the world”

can be an activist, while staying true to who I am and who I want to be.  This is what I bring to the world.  What do you bring?

Psychiatry and Practicum

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I have a psychiatrist!  The psychiatrist I was looking into, who I played email tag with for a good while, ended up working out.  I think this will be very helpful, as in addition to psychiatry, she’s also qualified to give nutrition advice and suggest non-prescription supplements.  She also comes from a spiritual and holistic philosophy, which is right up my alley.  For instance, she’s asked me to bring in food and dream journals to our next meeting.

She’s told me that with dietary and lifestyle changes (made slowly over time), I might be able to eventually get off my medications, or at least reduce them.  Sounds good to me!  I know I’m overmedicated (a result of seeing so many psychiatrists over the years, since I’ve moved so much, and each of them prescribed more meds).  It’s hard to tell at this point what are symptoms of my conditions, and what are actually side-effects of my medications.  I’m not sure how I’d feel about being completely unmedicated ever, being bipolar, however reducing my meds (as much as possible with them still being effective) is definitely one of my treatment goals, and has been for awhile.  Some of this stuff is just plain bad for you if you take it long term.

In other news, I’ve been diving head-first into planning my independent study.  Though I haven’t heard back from her yet, I emailed my professor a rough draft of the syllabus and asked for her input before making it official.  I’m making a syllabus, I feel like a professor!  So weird.

I also met with people at my university’s office of community service today, to get their help in setting up a practicum.  They gave some good suggestions, and I’m having a lot of fun researching different organizations where I could potentially observe and volunteer.  I’m looking to do art with children, either in an educational or therapeutic capacity.  Thankfully there are lots of options for this in my city.  Now I just need to initiate contact.

“About” page updated

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I finally created an “about” page!  It’s basically my “Introduction” post, copied-and-pasted and edited somewhat, with the addition of a comment policy and more detailed description of the blog’s focus and aims.  If you are a new follower, and didn’t get a chance to read my introduction, I urge you to read the “about” page!

~Kit

Some thoughts on language

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As I said, words and names are important to a lot of people (even though for some people, like myself, they’re a secondary language…my primary language is images and energy, which deserves a post of its own at some point).

Some people call themselves “disabled”.  Others prefer the phrase “differently-abled”.  Myself, I use both…it depends on severity and impact.  In some areas, I consider myself equal to (albeit different from) people who do not share my particular kind of neurodiversity or madness.  In other ways (and at other times…it does vary), my functioning is more severely impacted.  In these instances, I call myself “disabled”, but I also do not believe that “disabled” means “inferior”.

I have a similar stance on person-first language.  If you are or have been a student of special education or helping professions, they would have you believe that it is always most respectful to use “person-first language”:  “Kit has autism” or “Kit is a person with autism” (rather than simply “Kit is autistic”).  The idea behind the belief that this is most respectful is that it describes the person as being separate from their condition; there is more to them than that.

Of course, people are unique individuals, and there is more to anyone than any diagnoses they may have.  However, to many people in the mad pride and neurodiversity movements, person-first language is considered disrespectful, because it implies that there is something wrong with that condition, so they should want to separate themselves from it.  For people who have pride in their brain wiring, they want to celebrate it, not deny it.  It’s also actually often impossible to compartmentalize people in that way.  If I weren’t autistic, for instance…I wouldn’t actually be here.  Some other person, a person who is not autistic, would be here instead.  So rather than person-first language, many in the mad pride and neurodiversity movements prefer identity-first language (“Kit is autistic” or “Kit is mad”).

http://autisticadvocacy.org/identity-first-language/

This reminds me, too, of the fat acceptance movement, which says that there is nothing inherently wrong or unhealthy about being fat.  While some fat people may also have health issues, not all do, and regardless correlation does not equal causation.  As such, the very word “fat” is sought to be demystified and destigmatized, and many consider it an important self-identifier.

http://lovelivegrow.com/2012/05/these-are-the-fat-faqs/

Again, for me…it really depends.  It depends on how much I identify with that part of myself, and how much that part of myself impacts my life (either positively or negatively).  I say “I am bipolar, differently-abled (referring to ADHD and LD), and autistic” but that “I have OCD, some physical symptoms, and (possibly) borderline”.

Also, since I have gone through so many (drastic) weight changes in my short life, I don’t particularly identify with my fatness in any meaningful way (although I don’t think there’s anything wrong with it either, either morally or health-wise…aside from, in my case, lower back pain similar to what a pregnant woman might experience).  I prefer not to call myself or be called “fat”, but I do not mind saying “I have a fat body”, because to me, my body is not a core aspect of my identity.  It is a container (and according to my spiritual beliefs, a temporary one at that) that presently holds and transports my Soul.  My Soul, on the other hand, is what I really consider “essentially me”.   It can be challenging sometimes to find my place in the fat acceptance movement, because of this perspective, but I ultimately see the real meaning of “fat acceptance” as seeing fat as inherently value-neutral, and trusting fat individuals themselves to be in charge of their own health decisions (as well as identity decisions, like the language they use to describe themselves).

This is also how I see the mad pride and neurodiversity movements.

“disorder” and “disability”:  I again may be in the minority, in the context of the mad pride and neurodiversity movements, in my preferences on these words.  If another person finds them offensive, I will of course try my best to avoid their use with that person, but I personally do not find them offensive in reference to myself.  “Disorder” = “dis” + “order” (or in other words, “lack of order”, “disorderly”, “out of order”, etc).  I don’t have a problem with being accused of any of these things, because well…what is so wrong with being “out of order” or “disorderly” or “lacking order”?  Order is overrated; I like me a little chaos now and again.  😉

“Disability”, likewise, = “lack of ability” or “reduced capability”, or something along those lines… which on the one hand could be taken to mean that a person with a disability or disabilities lacks any abilities (which is just plain wrong), but it could also be taken to mean that that  person simply lacks or has difficulty with a particular area of ability.  This says nothing about whatever other abilities they have (because well duh, everyone has strengths as well as challenges).

So I guess the bottom line here, as always, is that everyone is different…and language is important, and complicated.  Because it is so complicated, and doesn’t come to everyone with ease, I’m not the sort to jump down anyone’s throats if they make a mistake.  There is an issue of accessibility here; social justice conversations need to be accessible to everyone, including people who struggle with verbal language and/or memory (remembering what words are ok to say and not).  What I would simply advise is to avoid assumptions or generalizations as much as possible, and to instead ask people in your life their preferences on an individual basis (and if you forget, just apologize!)  This is similar to asking someone’s name, or perhaps more accurately, like asking someone’s preferred pronouns.  Some people simply do not care how you refer to them (and, to be frank, to assume that everyone will care is in itself still an assumption).  But I think you’ll find that, with those who do care, asking this question, and really listening to the answer (including, perhaps, an explanation of why they use the words that they do), can be an excellent ice-breaker and way to get to know them, in addition to demonstrating respect.

Day Program Search

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I have begun my search for a day program (also sometimes known as “PHP” (partial hospitalization) or “IOP” (intensive outpatient)).  Logistically, it would make the most sense schedule-wise for me to do such a program in my winter break between the fall and spring school semesters.  This is when I have the most free time, and also when I am usually the most depressed.  However, from past experience I know that it can indeed take months to find and get accepted into a program (which I know, doesn’t make any sense at all…that could possibly be too long a wait for someone in active crisis, especially if they’re suicidal…but it is what it is and I need to bear that in mind in my planning).

Also…there would be benefits to starting sometime in the fall as well, if I could get into a program in the fall.  While I’d only have time for 1-2 afternoons a week with my schoolwork (depending a good deal on the length of the commute), this is better than nothing (and I could increase it come winter if I’m still in the program at that point).  Doing a program alongside school would mean I could immediately practice applying whatever I learn to my daily life and my “work” (being a student), and also bring difficulties I’m having in school to the groups.  This could potentially be a powerful learning cycle.  Also, doing the program as soon as possible would provide me with additional assistance and support in finding post-program treatment (the outpatient support groups I’m looking for), based on assessments that they do and their knowledge of me through their groups.  Finally, if I find a program that seems like a good fit but that takes a long time to get to by public transit, while the weather is still nice in the fall, I’d potentially be able to bike there.  I absolutely do not feel safe using a bike for transport in the winter (too much ice and snow).  Unfortunately I don’t have a car (or even car access through others), and can’t afford to be regularly taking taxis.

Interestingly, both Amber (my therapist) and my friend recommended the same program to me!  So I figure it’s worth looking into.  My friend did this program himself last summer, so I trust that they at least treat their clients humanely.  It’s geared specifically toward the mental health needs of LGBT people.  While my pansexuality (being attracted to men, women, and people who identify as neither or both) has not directly impacted my mental health (since I’ve been fortunate enough to be surrounded by supportive and nonjudgmental people for much of my life), I do like the idea of a program that I know will be accepting of LGBT people and their needs.  This is unfortunately not a given; being gay used to be considered a mental disorder, and being trans still is.  I would hope that if they’re accepting of this, they might be accepting of other “alternative lifestyles” as well, for instance polyamory and Paganism (though I’ll still take it slow.  I’ve been burned too many times to feel safe completely opening up right away.)

Also, the program is apparently very individualized, and comes from the perspective of mindfulness and CBT (cognitive behavioral therapy — working on combatting negative thoughts, for instance self-hate voices, with the idea that your thoughts affect your emotions which affect your behavior).  Sounds great!  Sign me up!  😉

Not so fast…I need to call them and set up a consultation/intake interview.  It’s impossible to know what I need to know just from looking at their website, and even though my friend speaks highly of it, I am not my friend.  We have different backgrounds and needs, so it might turn out to not be right for me after all.  Or might turn out to not be right for them (most programs, as well as individual clinicians, have a good idea of the clientele that they’d best serve).  I have…more experience with this than I’d like to admit, so I have a list of questions saved on my computer.  Time to bring that up, I guess.

At least, though, they definitely take my insurance!  Yay!

Moments of happiness (life update)

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After the last entry, I wanted to write about some happy things going on in my life right now.  I mean, I don’t want to torture you guys.  😉  (But this is a radical mental health blog, after all, so if you think you’re safe now from more entries on heavy topics…you should probably look for another blog to read.  Just sayin’)

School

~I just finished my summer Art Therapy class, and I got a B!  (It was going to be a B-, but the professor noticed a drastic difference in quality between my final paper and my previous papers, guessed that something was up, and allowed me to rewrite it after the class was technically over.  Thank goodness… I was really depressed the week that paper was originally due, and could barely muster the motivation to write it at all, never mind write it well.)

~For the most part, I really enjoyed the class!  It can sometimes be hard, with my radical mental health views and experiences in the Icarus Project (http://www.theicarusproject.net), to take psychology-related classes, because they come from the vantage point of the medical model.  I find myself feeling opinionated often, but biting my tongue much of the time, out of fear that I will give my madness away.  But my university is, on the whole, humanist (viewing all people as valuable and capable of directing their own treatment, as I do), so it was for the most part ok.  And it was my first experiential social science class, which was awesome and fun!  And there was a great sense of community, in which I felt safe to allow myself to be vulnerable, so all-in-all a positive experience. 🙂

~Next semester, I will be doing an independent study on intersections between Reggio Emilia early childhood education (an Italian philosophy/approach similar to Montessori) and expressive arts therapies, particularly play therapy and art therapy for children.  It will also explore therapeutic uses of art with children with special needs that may make verbal communication challenging, like autism.  YOU HAVE NO IDEA HOW EXCITED I AM, YOU GUYS!!  I feel like I’ve been waiting for this for the whole five years I’ve been in college, as it basically ties together all my main academic interests.  Also, there will be a PRACTICUM!  And ART!  And DOCUMENTATION!  (documentation:  making portfolios on children, including photos and captions, writing samples, work and art samples, case studies and observation notes, etc)  😀 😀

Hobbies:

~For my art therapy class, we had to keep a visual journal (channel our emotions into a work of art, and experiment with different media, and write a brief description on the back).  I would like to try to keep this up, as time allows, because I found it to be a very helpful way of processing things.  Once I figure out how to use my scanner (help, roommates!), I can upload some of it here.  It would be great for this blog to be more multi-media, to be accessible to lots of people with different ways of processing and perceiving.

~Summer is my favorite season, because I can be outside a lot.  It’s been a bit too hot to go hiking, but I’ve been taking (slow, easy) walks around my neighborhood, and going swimming a lot (at the local public pool as well as natural bodies of water)

~When it starts to get cooler out, I plan to get back into contra dancing… it’s been so long, and I’m really starved for the endorphins, music, and sense of community.

~The only thing I’ve kind of been failing at, since I’ve been so busy, is my spirituality.  I really need to make time for that, but it’s hard sometimes!  Life gets in the way.  Hopefully I can get back around to going to rituals with my local coven.

Activism

~My local Icarus Project chapter has, unfortunately, not been meeting regularly for awhile.  It happens when a group is small, with varied schedules…hopefully it will pick up again someday.  In the meantime, though, ASAN (Autistic Self-Advocacy Network:  http://autisticadvocacy.org) is still going strong, and also I still have this blog and the Icarus forums.

~My town rather recently started a climate justice hub, at which local climate justice activism and community has a physical gathering place.  It’s great; it makes getting involved a lot easier.

~I’ve also become (somewhat, intermittently) involved in my local fat acceptance community (http://www.haescommunity.org/).

Treatment/Recovery

~Things have been going well with my expressive therapist, who’s also been helping me keep things organized at my apartment (we meet twice a week; once at her office/studio for therapy, and once at my apartment).  Right now, we’re working on creating a life for myself that is not so chaotic, and has more regularity and routine.  We think this will help with my difficulties with sleep, concentration, time management, and depression/anxiety.  This is pretty basic:  routine is good for anyone, but especially mad and/or neurodivergent people.  The difficulty is in sticking to it.

~I’m in-between psychiatrists right now, which is…challenging.  I’ve been playing email-tag with someone who seems really great, so hopefully that works out soon?  (ugh, email tag)

~I’d like to get more in-person support from fellow mad and/or neurodivergent people, now that Icarus is on hiatus and ASAN only meets once a month (and is an advocacy group, not really a support group).  I’m looking into:  NAMI (National Alliance for Mental Illness:  http://www.nami.org), DBSI (Depression and Bipolar Support Alliance: http://www.dbsalliance.org), finding a local support group more geared to neurodiversity (rather than madness), and possibly doing some kind of day program during the winter break between the fall and spring semesters.

It’s in all honestly a bit overwhelming, because there are so many choices!, but my therapist is (thankfully) helping me through the process.  Obviously, since I’m a student, I can’t do everything (and don’t want to, either; I don’t want my madness and neurodivergence to be the core of my identity anymore, the way it was when I was in the hospital and later in residential treatment). So while school is in session, I’m going to stick to one madness group and one neurodiversity group, in addition to my individual treatment with Amber* (my therapist) and a psychiatrist.  I’m starting to like the idea of a day program in the winter more and more, though, since I have a lot to process still that I may not have time for just with Amber and two groups, and I usually get depressed in winter (between the cold weather, reduced sunlight, and lack of external structure).  It would give me a reason to get up and out of the house each day, and local people who can relate to me to support me through this difficult time of year.

~Amber is also referring me to get testing (again) for my learning differences, since the last time (in 2011) the person who did the testing was an asshole, didn’t really explain the results to me in layman’s terms, dismissed me when I expressed concern that the results were inaccurate and vague, and I ended up only with a diagnosis of “LD not-otherwise-specified” but with no specifics of how my LD manifests itself and what I can do about it (which is kind of the point of getting tested, isn’t it?).  I’m looking for more clarity, both on my LD and my autism (which was diagnosed late, compared to my other diagnoses, and again without much specificity on where exactly I am on the spectrum, or what might be helpful).

*pseudonym