a message for all those working hard fighting, wondering why I don’t go to meetings anymore

March 29, 2018 § Leave a comment

I used to go to a lot of meetings–nights, weekends, morning till night. It was almost all I did, on top of everything else (my child, my paid work, my creative/intellectual life). Then I learned that the temporality of a lot of movement work, the urgency of it, the life and death-ness of it, triggered disabling anxiety and mania in me, which drove me to more meetings and more frantic activity in an endless negative feedback loop, and so I had to basically stop going to meetings or else I would be stopped. It was a humbling thing, to be forced to reckon with your own real emotional and physical limits. I still struggle with it–I still try sometimes to go to stuff, thinking, “well, maybe just this once or maybe if I do it like this and not like that”–because I want to be helpful, I want to be of service, I want to support. I see that others are fighting for their lives. But when I do try to jump in, inevitably I end up remembering why it is I just can’t do very much beyond going to work, taking care of myself and my child, and writing with the few extra hours a week left over. Slow things, deliberate things.

Now, on Facebook, I see people going full tilt on all sorts of issues I still care about deeply but know I can’t help with, if I want to stay stable. It’s really hard not to jump in. It feels wrong. It’s also hard to imagine what it might mean to be involved in ways that don’t presume putting one’s body in public.

That’s why, when I encountered Johanna Hedva’s “Sick Woman Theory,” I felt like I wanted to post it here. (I wish I could just post it to Facebook but I recoil somehow from posting anything vulnerable, anything I’m actually thinking about or dealing with. It’s easier to post funny stories, random shit, jokes.)

Anyway, this passage of Hedva’s particularly resonated with me:

If we take Hannah Arendt’s definition of the political – which is still one of the most dominant in mainstream discourse – as being any action that is performed in public, we must contend with the implications of what that excludes. If being present in public is what is required to be political, then whole swathes of the population can be deemed a-political – simply because they are not physically able to get their bodies into the street.

And then this, too, I love and agree with 100%:

I used to think that the most anti-capitalist gestures left had to do with love, particularly love poetry: to write a love poem and give it to the one you desired, seemed to me a radical resistance. But now I see I was wrong.
 
The most anti-capitalist protest is to care for another and to care for yourself. To take on the historically feminized and therefore invisible practice of nursing, nurturing, caring. To take seriously each other’s vulnerability and fragility and precarity, and to support it, honor it, empower it. To protect each other, to enact and practice community. A radical kinship, an interdependent sociality, a politics of care.
 
Because, once we are all ill and confined to the bed, sharing our stories of therapies and comforts, forming support groups, bearing witness to each other’s tales of trauma, prioritizing the care and love of our sick, pained, expensive, sensitive, fantastic bodies, and there is no one left to go to work, perhaps then, finally, capitalism will screech to its much-needed, long-overdue, and motherfucking glorious halt.

And goddammit, can I just say how excited I am to listen to the Judith Butler talk Hedva also references in her essay, entitled “Vulnerability and Resistance”…here it is:

 

 

 

 

How to make your social movement more inclusive of neurodiversity

March 26, 2018 § Leave a comment

I’ve been fairly stable, and so has G, so I haven’t been posting a lot. But I came across this and found it summed up thoughts and feelings I’ve had a lot over the last few years, a lot a lot, about the accessibility of movement work. I thought about sharing it on Facebook but I dunno. So here you go.

liz kessler's blog

Some friends and I have been talking lately about the ways that people with learning disabilities, developmental disabilities and mental health issues have become excluded from the social justice organizations that we have been a part of. Even in grassroots collectives and unions that strive to be inclusive and where people know how to talk about disability, many people don’t know concretely what steps to take to make their organizing more inclusive of us. Here are some ideas to get you started.

(A couple notes on terminology: I use the term disabled people rather than people with disabilities because that’s how I prefer to refer to myself, and a growing number of people are referring to themselves that way. Here’s a good explanation of why. Neurodivergent is an umbrella term for people whose minds work differently than what is considered “normal” or socially acceptable. It often refers to people who…

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Mad Pride Poetry

January 24, 2018 § Leave a comment

Excited to let you know that some of my poetry was accepted for publication in Outsider Poetry, which describes itself as a “literary review for those who create with mental illness, are self-trained, or create art and poetry that challenges cultural and academic norms.” Fiercest respect!

Click below to read:

fox smallere copy

There Might Not Be a Reason

December 13, 2017 § 2 Comments

NeuroFly

Something I’ve been thinking about a lot lately is the difference in levels of understanding of and sympathy for mental illness when it’s understood as the result of trauma (personal or historical) versus when there’s no real reason–or when the reason is simply physical or psychological variation we don’t fully understand yet, something captured well in the concept of neurodivergence.

In those latter cases, of which I am one—to quote Lady Gaga, I was born this way, hey—mental illness still carries the very deeply and unconsciously held stigma of being “a personal, moral failing that no amount of psychiatric care can alleviate,” as Angelica Jade Bastién writes of her own worst fears about her bipolar, “a dark mark that can’t be hidden or scrubbed away no matter how hard you try.”

This is literally the meaning of stigma—a socially-imposed, outer mark of internal or essential wrongness or badness or exclusion, a scarlet letter. Bastién’s words remind me of my childhood and adolescent sense that my neurodivergence was somehow visible for all to see, inscribed on my body or undeniably present in the weirdness of my habits or clothes or hair. Only recently have I realized that this experience was not simply social anxiety, but rather a nascent awareness of the real difference within me, and of the real social judgment placed on those who are different for no reason.

For instance: earlier this year, I had a conversation at work with a volunteer about her long career as a nurse. We were making chit chat, and I asked how she met her husband. She responded that he had once worked as a social worker, and that they met when they were both working at the same facility, which provided mental health treatment for youth.

“So many kids there, their stories were just terrible–they were there because they had been badly abused, and you felt so bad. But then with some of them, there was nothing wrong, nothing that had happened–like this one girl, she had schizophrenia, and she was just, you know…”

Here her voice drops down to a whisper, like it’s a dirty secret. “…crazy.” 

I don’t write this to criticize this woman, who I think is a good and kind-hearted person. If I had said something—which I didn’t, because I needed time to think about what she said and how I felt about it—she would have reflected on her words and assumptions and probably tried to change them, I think. So the point is not about calling out any particular individual.

The point is to bring attention to the reality that, in a moment when the move to destigmatize mental illness has gained popular traction, when it has become more okay to be out about having mental illness, we see at the same time an impulse to cleave those who experience it into deserving and undeserving groups—those who understandably and for legitimate reasons developed mental illness and those who are just, you know…crazy. 

The irony is that, in failing to recognize that not all mental illness is caused by trauma, that some mental illness is simply neurodivergence, we also fail to recognize how our attitudes about mental illness might create trauma for those who live with it. Trauma does not only cause mental illness; sometimes it is the effect of how we understand and respond to mental illness socially and politically.

We can easily recognize and sympathize with those who developed mental illness as a result of unequal distributions of power—as the outcome of abuse or oppression or injustice. It’s a much harder thing to challenge the ways we continue to internalize views of non-trauma-based mental illness as absolute otherness, as craziness—which also reflect unequal distributions of power.

 

appointment

November 11, 2017 § Leave a comment

i remember the way limbs would twitch

while falling asleep

from the time before

on lithium. not my limbs or

my bloodstream or my

bipolar this time but

those of the one

i sleep beside / and what does it mean

does it make a difference

whether he calls me girlfriend

or partner or wife,

girlfriend

is how he introduced me this time

to the PA at the appointment

at the office where i went

for awhile

after the hospital

but stopped

because you never saw

the actual doctor, only

the PA–why? and where

 
i had to be

just a little bit

of a bitch, i had to go to

bat, be all

so have you heard

of such and such research

on light therapy–is that an option?

and, i know latuda

is good for bipolar depression

specifically, and three years ago

it wasn’t generic yet; is it now?

 
because

i hate it when doctors

don’t explain the shit

they really should, when

they lack imagination

to suggest other options,

new things you might not

have thought of yourself

when suicidally depressed.

i hate it when doctors

don’t ask you the questions

you might not have known

to ask yourself

because you cannot

advocate for yourself or even

take yourself to the doctor

when it’s actually

an emergency,

you have to be dragged there

against a brain screaming constantly

for death–

 
not my brain this time, no,

by the grace of god but how

do you think

i would know otherwise

what a doctor should be asking

but isn’t

The Luxury of Commitment

October 14, 2017 § Leave a comment

Right now G is outside on the porch scrolling through his phone–I can see the light from the screen through the dark of the window from where I sit inside, typing on the bed. He’s been more depressed this year, more frequently and worse, than in the two years prior, since his last major break. It’s not as extreme as it was then, but it’s worse than it has been for awhile. It started at the turn of the year and it’s autumn now, as indicated today by first real cool front. Got real bad during the summer, after a three-week school program in Ecuador that allowed him to imagine himself a different person, doing different things in a different place. Then back home to real life and the reality of being a person with bipolar, with depression–in part, I discovered, because he’d been taking just half his mood stabilizer after he got mad at his last psychiatrist and neglected to refill his prescription. He’d been making do with half doses while in Ecuador, high on the intensity of studying abroad, high on everything new, on the fantasy of a new self.

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What if talking about the madness of King Donald actually fights stigma?

September 24, 2017 § Leave a comment

Since the fall of 2015—during the presidential primary scramble, when I first became aware of his violent will to power—I’ve wanted to write about Donald Trump’s mental health, like everyone else. More specifically, I’ve wanted to reflect on all of the agonizing over whether it’s okay to write about Trump’s mental health, and whether that unfairly stigmatizes those with mental health diagnoses, from the standpoint of one with various and sundry diagnoses. I’ve held off because not only because so much ink has already been spilled on this topic (or so many frantic keystrokes, I guess) but also because I have so much to say about what’s already been said that it feels like the task of saying anything, or saying something concisely and coherently, would be exhausting. But here we go.

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