We Don’t Need More Awareness

miawarenessweek

Apparently, it’s Mental Illness Awareness Week, and apparently, since I’m a crazy person, I’m supposed to care about it.  Well, I don’t.  I think it’s bullshit.

Lack of awareness is not the problem.  We all know mental illness exists.  I doubt you could find anyone in this country, in any developed nation, who doesn’t have a lived experience of mental illness or know someone who does.  Plastering banners on Facebook and wearing rubber wristbands and pointing out that 25% of us are bughouse nuts doesn’t actually help anyone.  We don’t need more awareness.

What we need is compassion.  We need people to stop treating us like we’re all axe murderers who will hack them into pieces at the slightest provocation.  We need people to stop being afraid to let us be around kids.  We need people to stop ignoring us because they don’t know what to say or how to make it better.  We need people to stop treating us like we’re intrinsically different from them.

We need to look at the epidemiology.  We need to look at the fact that people of color and poor people are more likely to be diagnosed with mental illness.  We need to look at the fact that trauma is probably the single biggest predictor of a psychiatric diagnosis.  We need to look at how being mentally ill puts us as much higher risk for being emotionally, physically, or sexually abused.

No, it’s not even that we need to look at those things–we have already established these as facts.  What we need to do is prioritize finding solutions to these problems.  Psychiatric treatment doesn’t address the underlying issues of poverty and racism that, in many cases, cause the emotional distress.  Most psychiatric treatment is still not trauma-informed; in fact, it is structured in a way that takes away all of the patient’s power and makes it even easier to abuse them.

We need more involvement in the system.  We need to remake the phrase “inmates running the asylum” into a good thing, into a working model for treatment of emotional distress.  We might not know exactly what we need in our moment of crisis, but people with lived experience know better than any guy with a white coat and a diploma on his wall.  We need professionals who will work with us, who will respect us as whole, competent people even when we don’t appear that way.  We need to hold the choice in our treatment and the power in our lives.  We need to stop being so afraid of violating boundaries that we leave people suffering all on their own.

We need a system where the patients hold as much power as the clinicians, or close to it.  It can be done; I’ve seen it work.  But it’s only available to rich people.  We need to find a way to make that available to everyone who needs it.  We need healthcare that doesn’t discriminate against people with emotional distress.  We need doctors who take our physical problems seriously instead of telling us it’s all in our heads.  We need to be listened to, heard, believed, included.

We need a system that doesn’t turn people away because they’re too sick or not sick enough.  We need a system in which the quality of care doesn’t depend on the amount you can pay for it.  We need a system that can offer people support beyond one hour of therapy a week if that’s what they need, but without threats and seclusion and removal of freedom.  We need a system that, instead of isolating us further, brings us into a community–first a community of other people experiencing emotional distress, and then into the larger community

But awareness?  No, we’ve got plenty of that.  All it does is reinforce the broken system that’s currently in place, so count me out.  I’ve got all the awareness I can stomach.  Instead, I’ll leave you with a poem.  To me it says everything I’m saying here except much more clearly, so here’s hoping you guys can understand it too.

Formaggio

The world
was whole because
it shattered. When it shattered,
then we knew what it was.

It never healed itself.
But in the deep fissures, smaller worlds appeared:
it was a good thing that human beings made them;
human beings know what they need,
better than any god.

On Huron Avenue they became
a block of stores: they became
Fishmonger, Formaggio. Whatever
they were or sold, they were
alike in their function: they were
visions of safety. Like
a resting place. The salespeople
were like parents; they appeared
to live there. On the whole,
kinder than parents.

Tributaries
feeding into a large river: I had
many lives. In the provisional world,
I stood where the fruits were,
flats of cherries, clementines,
under Hallie’s flowers.

I had many lives. Feeding
into a river, the river
feeding into a great ocean. If the self
becomes invisible has it disappeared?

I thrived. I lived
not completely alone, alone
but not completely, strangers
surging around me.

That’s what the sea is:
we exist in secret.

I had lives before this, stems
of a spray of flowers: they became
one thing, held by a ribbon at the center, a ribbon
visible under the hand. Above the hand,
the branching future, stems
ending in flowers. And the gripped fist–
that would be the self in the present.

–by Louise Gluck, from Vita Nova

Advertisements

19 Comments

Filed under Uncategorized

19 responses to “We Don’t Need More Awareness

  1. BRAVO!!!!! Absolutely wonderful post!

    ( I suppose I should amend that to BRAVA!!! )

    Yours,

    Pam

  2. Dear Hope, I think you need to write a book. One, because you are such a smashingly fine writer and have so danged much to say…and two, because it would give you a goal, something to get up for in the morning…Not to mention that if it got published it would give you an effing income. Think about it, would you? (okay, maybe that feels like asking too much right now, but if not now when? as Rabbi Hillel asked in another context) What harm could it do? The worst that might happen is nothing worse than that you couldn’t find a mainstream publisher and might have to do the publish-on-demand thing. But you’d be no worse off than now…and that is about as bad as I have ever heard you. I will tell you that if you complete a manuscript at a minimum I will suggest to my own editor at St Martin’s Press that she give it a look-see. And I will send her your name. That’s how good I think any book you wrote would be…

    Maybe I am completely out of my gourd, I have been told that before. But I dunno — it seems as if it is either suggest something crazy or you will be dead before long. So, there you have it. I had to say something, even if it is the wrong thing. Better that than stay silent and just let you die.

    Love and a big hug to you (whatever it is you choose to do or not do)…

    Pam

    • I’ve thought of writing books before. I majored in creative writing at a fine arts high school where we did the equivalent of an MFA in creative writing, so I’m technically very proficient.

      I just can’t see the shape of my own book, though. (I know you’re a visual person, so I hope that will make sense to you. I don’t know how else to explain it.) Basically, I don’t have a unifying idea or purpose. There are a lot of things I feel strongly about and have things to say about, but they don’t all relate. Even when they do relate, I can never quite grab hold of that thread that connects them so I can stitch the pieces together. Without a central message, I would have no idea how to structure it, how to weave all the thoughts and opinions together into one cohesive fabric.

      (Wow, getting a little heavy-handed with the knitting metaphor there.)

      I’ve produced very little creative work since I graduated high school. At first I told myself I was just burned out and it would come back, but it’s been 10 years now. Over the last few years I’ve felt like there is some story that’s needing to be told before anything else can come, but I don’t know what it is or how to get it out. I would love to be able to figure it out, to be able to write again. I just don’t know how.

      • Dear Hope,

        I had a feeling that you had had some past experience with creative writing! Don’t despair, it will come back, something will…These talents don’t just leave. Besides, it is so very clear that you ARE a writer, par excellence. If nothing else is obvious, that much is…

        Still, I know, I know this problem so very well. I was and still am a writer before I ever was an artist. I had a small brain bleed in 2007 that unleashed the visual artist in me, but before that it never occurred to me to do fine art…I ONLY wrote and thought I would never do anything but. That said, when I wrote my first published book, one of the only helpful pieces of advice that I took and that helped me was, Begin at the beginning…I dunno why, but in terms of writing a memoir, it did help me structure the danged thing, even though in the end, we threw out the strictly chronological one. But the point is: get into it, somehow, and get writing, and never mind worrying about how you will finish and polish the final thing. Just write and write and write (as you clearly already do).

        Nevertheless, the worry about a unifying structure is no small barrier. it has kept me from following up DIVIDED MINDS with another memoir. There are plenty of books on how to do it, but I simply haven’t had the wherewithal to — I dunno… You get the problem completely! On the other hand, it might not be as big as it seems, once you (or i) decided to simply commit to the book, and “just do it.” day by day, writing that one page a day, 365 pages in a year. Sometimes you find the structure as you write, as you know. At least I did, because I write in order to find out what and how I really think and feel.

        Anyhow, just some encouragement, because I really think this could be done, and it is clear that you have had these thoughts/dreams well before now. It isn’t too late, in fact maybe the time is ripe. You should know that I didn’t have my first book published until I was 53 or 54 (yes, I wrote my first novel well before then. All writing counts in any event, it is all practice and all practice is good practice).

        Do take care, with love and another hug,

        Pam

  3. Pingback: We Don’t Need More Awareness | Nightsong's Nebulous Narrative

  4. This is all shades of awesome!! Would you be willing to post it on CSS? (Or can I put a link there to this post?)

  5. As I was reading, I was thinking the same thing as Pam! I love the way you right. You are obviously an intelligent person and have a way of getting your point across in an easily understandable way. You are well informed about politics and mental health- either of those would be great topics I think. But also, someday I think you could write an amazing book about yourself. I know I would read it. 🙂

    • gah! I cant believe I wrote “right” when I meant “write”! Woops.

    • I don’t know if I’d actually be able to write a coherent story about myself. Between the dissociation and the lasting damage from ECT, there are huge swathes of my life I can’t remember. I think there’s probably more time I don’t remember than time I do remember. And things I do remember are often out of context and out of sequence, and no one can set it all straight for me.

      I had this teacher–the creative writing department chair, actually–who used to tell me I could never write autobiography because no one would believe it. “The difference between fiction and life is fiction has to make sense,” she’d say. I’m pretty sure she stole that from some famous writer, but I’m too lazy to look up who it actually was.

      What I have now is more a collection of strong opinions than any sort of narrative. My opinions are informed by my experiences, of course, but I can’t seem to pull those out. At this point in my life, I’m good at rhetoric but not narrative or lyric. I don’t know how to shift out of that–I’ve been trying for 10 years. It frustrates me.

      • Dar Hope,

        I dunno. In my life, it was those people who told me “You can’t do this, or you will never do such and such” esp in the areas of writing, who were the single most destructive forces,.,.One person in particular told me “You can’t write fiction…” and this was AFTER a fiction writing teacher at college told me I was the single best short story writer he had ever had. But to whom did I pay attention? You guessed it, the twerp of an independent technical-writing editor! Mostly because she said something negative and I am “by nurture” programmed to accept negative feedback as the ONLY valuable and valid feedback. That said, I would say to you, NEVER let anyone tell you you can’t write or will never write anything. That is utter NONSENSE. Never is a very very long time, for one thing, and life is full of changes and surprises. Plus, the one thing I am very certain of, Hope, is that you are a superb writer and could write just about anything you want to, including autobiography. Memoir, after all, is a slice of life any slice of life that you design or decide to write about. You don’t need to write your entire life story. Take a look into that idea instead of the notion of autobiography, it is a different concept and a much easier and in some sense better notion for a younger person than one’s entire autobiography. When we wrote DIVIDED MINDS, it was suggested to us, in order to limit the scope, to keep the subject just to “twins and schizophrenia.” Now that was big enough, and for good or ill it did help us narrow the book enough to keep going.

        I know I shouldn’t write these long comments but your comment about that teacher just gets my blood boiling on your behalf. You have had a LIFE and that is good enough for memoir, and a book of a memoir, I don’t care how much you have forgotten. Trust me, our 350 pp book was 400 pp of my own writing alone before my sister joined it, and I thought I had NO memories left either…But it is really surprising how just a few memories and thoughts can fill up pages and pages.

        Anyhow, I will cease and desist, but I am so glad that another person agreed with me about this book idea, because I just think you should try it, again, and not give up. If there is anything at all that I can or could do to help or encourage, remember that I am here, i am not employed and I have the time…AND YOU ARE WORTH IT.

        Love

        Pam

      • I like long comments, and I appreciate the encouragement.

        I should probably clarify that my teacher was joking–I forget sometimes that tone doesn’t always come through in text. She’s actually one of the two people most responsible for making me believe I could write and that it was a talent worth pursuing.

        But the truth is that a lot of my life is either so weird or so stereotypical that it wouldn’t hold up in a fiction workshop.

        I guess ultimately I am afraid of not being believed, again. It’s happened so many times, and it’s devastating every time.

        I think what I have to do is figure out what story it is I’m needing to tell. Unfortunately, I have no idea how to do that.

  6. Hope, this is some of the finest, most inspiring writing I have ever read, on any topic, period. I have not forgotten our project, and after I have sufficiently recovered from the loss of my father I look forward to kicking some white coat *ss with you!

    • Wow, thank you.

      For some reason, my best opinion writing happens spontaneously, usually when I’m pissed off about something. Not like murderous rage levels of pissed off, more just the “oh my god, I’m so sick of ______ that I just can’t keep my mouth shut about it anymore” level of pissed off. So I just sit down and kind of spout off at the mouth (er, fingers?). I don’t plan, I don’t structure, and I don’t edit. Half the time, going back and reading it is this weird experience…I know I wrote it, it’s not like I dissociated and don’t remember having written, but I don’t remember quite what I had written. I recognize them as my words, but there’s this weird element of surprise, too.

      And it’s a surprise when other people appreciate what I write when I’m pissed off. I always kind of expect people to be put off by what I say, but through lots of therapy I’ve learned that when I feel like I’m expressing out-of-control rage, I’m still way more controlled than most people’s displays of mild anger. Any expression of anger feels inappropriate, so I expect to “get in trouble” with people. You’d think I’d be used to it by now, but I’m still shocked when people like/agree with posts that feel like rage-y rants to me.

      As for our project…take all the time you need. Grief is complex and surprising and always seems to last much longer than I think it should/want it to. I shouldn’t be your priority right now, and that doesn’t make me feel neglected or forgotten, so don’t worry. Just take care of yourself.

      • I have had the same experience, that when I get all worked up about something and spew out what I consider spleen, for me, the piece is much better than anything I’ve carefully “crafted.” I admire writers who don’t look back.

        Thanks so much for your truly meaningful words. I have been working through the initial grieving process with my therapist, who has helped me understand that the person I’m grieving for has actually been gone for at least a decade. Yes, of course up until the last breath he was still my old man, but time had wrung all the juice out of him and left him a suffering shell. So it’s a sort of time machine we operate in, here today and gone yesterday, nobody’s for keeps.

  7. Loved it! Shared it on my fb page. I agree with the commenter on writing a book. I have the same idea and the same problem where my stuff isn’t really cohesive. But I think it’s be damned good.

  8. Can I get an AMEN with that?! Spot-on, everything you say here. The Gluck poem included. (Of course, everything goes better with a little Louise Gluck.)

    • Oh, yes, everything is absolutely better with Gluck! I lived in Boston for a while, and I really had to fight the urge to stalk her just because she’s such an amazing writer.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s