Monthly Archives: June 2011

Making the way with love

I wanted to write something in honor of Samantha Jane Dorsett, but I didn’t want it just to be about her death.  There is so much to say about the holding of collective grief and healing justice, the way we as movements, communities, individuals do and don’t do this.  The ways that our grief and who/what we have lost has to be part of our liberation and our healing and our transformation.  But then I re-read Samantha’s novella Troubled Sleep on the second anniversary of her death, this past June 20th, and was inspired all over again by how amazing, how revolutionary it is.

Samantha made beautiful art, mostly before I knew her.  She drew hilarious and inspiring comics and wrote a genius novella and poems and so many other things.  In addition to just how plain amazing her creations are, I think that Sam’s art, her drawing and her writing and her flyers and her organizing and her friendships and her soup, were a way she took care of her people.

There has been lots written about how art is a part of movement building in the more conventional sense.  We have countless examples of artist-revolutionaries breaking silences, bearing witness, fighting against oppression and repression, inspiring grassroots explosions of struggle and freedom.  Samantha was such an artist, and she was something else besides.  It seems to me that the things she made, all of them art, were as much about caring for the people immediately around her, about survival and holding and comfort and tiny shreds of hope, as they were about  contributing to large-scale movements for justice.

Her art is an incredible example of art as an act of love, therefore of care, support, and healing.  When we think about love as an action, as bell hooks talks about, making can be just one more way we love each other and maybe even ourselves.  And all of this can become a microcosm of what our larger movements look like, how we feel when we are participating in them, what the work is.  Yashna Maya Padamsee wrote an amazing piece about how healing justice work is about moving beyond self-care to community care, to fostering organizations and movements and communities and networks and cultures that intrinsically value and support our well-being.  She writes,

“Can we understand how creating another world will require, or rather, demand our well-being? From small-town collectives and national organizations to strategy and pop-ed sessions to shared meals and parties- it is our responsibility not as individuals, but as communities to create structures in which self-care changes to community care. In which we are cared-for and able to care for others.”

The practice of revolutionary art-making is often framed either as an act of individualized self-care, that one steps out of the “real” work of organizing to do, or as a tool for moving the hearts and minds and bodies of masses of people to collective action.  It can be both of those things.  And then there is this: art as a way we show love to those around us, as one of the ways we make it possible for all of us TOGETHER to move forward and fight, to heal and carry on, to grieve and hope.   Perhaps our most liberating, transformative artists are the ones who were just writing to give their friends, families, and selves something that would help them make it to the end of one day, and then the next.

I have lots of questions about revolutionary art as an act of love, liberation, healing.  About what access means in terms of art making and sharing.  About when we break silences and when we keep our secrets safe.  About what it means for me to share my writing  as a white, able-bodied, cisgendered (not trans) person with class privilege, someone with so much in common with people whose stories and voices have been elevated at the expense of the silencing of others for centuries.   About how to tell stories that will give hope, inspiration, glitter, and heart.  About how the things we do to take care of ourselves can also help us take care of other people and about how the things we do to take care of other people can also help us take care of ourselves.  Asking questions, challenging ourselves and each other, being humble, moving and making in a way that respects the dignity and self-determination of all people, all of this is building love, like developing a new muscle, like visioning and creating liberation—the slow work of threading together our bodies, our hearts, our words, and our creations.

Dorothy Allison—up there with Samantha as one of my revolutionary/loving artist role models—writes in “Muscles of the Mind” in her book of short stories, Trash:

The only magic we have is what we make in ourselves, the muscles we build up on the inside, the sense of belief we create from nothing.  I used to watch my mama hold off terror with only the edges of her own eyes for a shield, and I still don’t know how she did it.  But I am her daughter and have as much muscle in me as she ever did.  It’s just that some days I am not strong enough.  I stretch myself out a little, and then my own fear pulls me back in.  The shaking starts inside.  Then I have to stretch myself again.  Waxing and waning through my life, maybe I’m building up layers of strength inside.  Maybe.’”

The art that we create and share is part of building that muscle, part of building truly loving communities that can hold us all up even in the face of the most horrific violence and oppression and trauma.  And the deep love we create and share is often all that we have.  Someone told me today that what makes it possible to live through grief is the moments when you feel the presence of the person you have lost as a strong beam of pure love.  That is stronger than death, stronger than oppression—it keeps us going even when there is no hope.  And at the end of the day it is what we use to slip through the cracks, to rage and live and fight another day. Samantha wrote, in Troubled Sleep:

“In Franco’s Spain, it was illegal even to hold hands in public streets.  Was there really something good, something inherently good about affection, another thing that brought people close?  So much affection was channeled and controlled by pimps and husbands.  But still there was something special about the way people gently touched and reached out to each other, some tenderness that can’t be controlled.”

Thank you, Samantha, for being a bunny princess beam of pure love, for the chance to know you, and for leaving behind your art that pulls us up and through and together.

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Filed under community care, healing justice, resilience, samantha jane dorsett, self care, story telling

mirroring resilience

When I feel the lowest, the craziest, the farthest from capable and who I want to be, all I want to do is immerse myself in stories.  Like I want to go from listening to Harry Potter on CD in my car directly to watching bad TV on my computer directly to reading some completely engrossing young adult speculative fiction novel (which right now, ps, is The Shadow Speaker by Nnedi Okorafor-Mbachu—highly recommended).  I want to be immersed in stories that are not mine, in realities that are comprehensive and full, in worlds that I can relate to but that are clearly, starkly different from my day-to-day.

It is hard to talk about having a hard time because like with so many other things in our world, we are taught that there is a distinctive mental health binary.  There are crazy people and there are normal people.  If we are capable of functioning, putting one foot in front of the other most of the time, then we are of the sane half of the world and we work like hell to distance ourselves from everyone else: THOSE people who just can’t seem to hold themselves together.  It’s a fear thing, like so much interpersonal oppression– we try to distance ourselves so that we don’t see ourselves reflected in people who we have been taught to look down on.  And, of course, there is a huge, powerful, well-funded system behind it that tries to keep us in line—it’s the psychiatric part of the medical-psychiatric industrial complex–the definitions of normal and crazy created by those in power to fit themselves.  The pharmaceutical companies that try to convince us that drugs will fix problems so obviously caused by poverty, bias, and violence, the institutions that work to isolate us and convince us  that it is all in our heads, that we should never talk about our feelings and hard times except  to people we (or our insurance) pay to listen, that we are permanently broken and alone, and if we let on to anyone how broken we truly are, they will mock and shun and hurt us like they do the people who can’t hide their crazy.  It’s just you.  It’s just you.  It’s just you.

Everyone I have ever met struggles sometimes.  Experiences of trauma and oppression compound hard times so we interact with them differently based on our experiences, what tools we have available to us, what support we can mobilize within and around us.  The root of the word health is wholeness.  Wholeness is something we all find glimpses of in different ways, at different moments, as we try to keep our heads on our shoulders on our chests on our bellies on our thighs on our calves on our feet on the ground.  I deeply believe that wholeness involves the insides and the outsides of ourselves: it is body-mind-spirit-community-ecosystem-world.  Working towards health is working towards collective liberation because it has to be, because to be whole takes all of us, together.   No one’s crazy is an individual problem with an individual solution, because what could possibly be whole about one person, all alone?  To me, health only exists within movements and communities struggling for justice, dignity, and self-determination—without collective struggle, we are all just some kind of sick in a sick, sick world.

What would it truly look like for the work of mental health to be the work of centering those of us most marginalized by psychiatric oppression/individualized normalcy/crazy?  As opposed to a politics of inclusion/exclusion where we leave the most marginalized of our people behind, claiming we will pull them up later, what if we practice what Dean Spade calls “trickle-up social justice?”  If we work to center the voices, work, and power of those most oppressed among us, we will all benefit, unlike the fallacy of trickle-down economics by which the privileged compound their own privilege, over and over again.  Trickle-up social justice when it comes to mental health justice means we center the resilience and resistance of moms who are surveilled by welfare and are threatened with the loss of their kids because they sometimes have days when they are too depressed to get out of bed, of transgender and gender non-conforming homeless folks whose trauma is compounded every day by violence they experience and fight back against but who are diagnosed paranoid schizophrenic because so many psychiatrists can’t imagine that such realities exist, kids who are so unsafe in their homes that they have to split themselves into a million parts just to survive.    Mental health justice depends on  dignity and self-determination when it comes to support and healing, understands what goes on in our minds is intimate, private, belonging to us alone and also a crucial part of movement building, and does not allow for simple categories like normal versus crazy.

It’s crucial that we see mental health as a collective struggle as opposed to an individual problem.  It’s really hard to see how to do this, given how important it is for us to choose when and how to share our most internal experiences.  I think that one way we start is by beginning to name our own resiliences: to recognize, talk about, honor, and share the really smart and brave coping mechanisms we have developed to get us through.  Of course they are so individual and based on our particular context that they may not be useful to many other people, but just the fact of the naming that we are all resilient and all have things we practice that make us feel better when we are feeling our worst is revolutionary.

An example: Since I was seven years old, I read speculative fiction when I feel crappy.  It’s probably the practice I have engaged in for the longest at the bleakest times.  It’s an ingrained thing in me now: when I can barely get myself out of bed, when all I want to do is stare at the wall, I can open some book that will transport me to some other world in which magic and intuition are lived and named and respected and I can get through the day.   Stories help us practice things without having to take such big risks as it can sometimes be to try things out in “real” life.  They can be like cushions or training wheels or holding a really good friend’s hand, so that we can try out what it feels like to think or feel or enact certain things that seem scary or overwhelming or just plain impossible.

Speculative fiction develops and strengthens our imaginations, which we need in order to vision and dream the world we are trying to create.   It lifts us up out of The Way Things Are and creates enough space for us to imagine a world centered on dignity and self-determination, a world that so often feels so far away from the one we live in.  For me, the hardest days are often connected to when the world we want/need/imagine/create feels the most unattainable, so any tiny space for possibility helps me breathe.  Our assumptions about what is stuck and what is moveable are completely unsettled when we engage with talking animals, omniscient technology, and the rise and fall of civilizations so like and so unlike our own.  This allows us to come up with new resistance strategies and maybe, just maybe, to remember the moments in our lives we often dismiss as not real, the times when we listened to our intuition even when it felt “crazy,” the moments when we did talk to animals…

I think that another part of what draws me to stories when I am having a hard time is their predictable arc, meaning something bad happens to one of the main characters and then it is resolved, unraveled.  Even if everything is not all the way better, some crisis is averted or some conflict is satisfactorily closed.  There is finality, the ebb and flow of hard times and struggle, the reaching of solutions and conclusions.  There is the end of the chapter or the episode or the whole damn book and I can breathe again.  There is some feeling in my body that comes with the end of a good story, like the door has been closed and my mind is quiet and I can just be still for a few moments while the ripples emerge outward from some central point in me.    I feel it in my body, this quiet returning to what is around me from the other worlds I have been soaking myself in.  We don’t get that much in the “real” world.  The injustices that surround and enmesh and ensnare us usually don’t leave us with moments that feel like resolution, in which the energy and fight we mobilized is allowed to move through us and come to some sort of temporary end, closure, a place that we can notice as stillness, a place to move back into the circle again.

Our bodies are equipped with mirror neurons: we experience the same electrical transmissions and connections when we imagine or watch something happening as when we actually experience it.  If I imagine myself typing on my computer, neurons fire in the same places as if I were actually typing.  Mirror neurons are thought to be a big part of how we develop language, how we empathize with other people, how we practice and learn.  Because our nervous system doesn’t really differentiate between the things we live and the things we witness, it also doesn’t distinguish between what we live and what we imagine.  This means that when we dive into story, immerse ourselves in fantastical worlds, our bodies and minds are learning what it feels like to have arc, release, conclusions, and triumphs, the way that stories so often do.

Trauma steals from us this exact ability:  we get stuck in an unresolved stress response (fight, flight, freeze, appease, or dissociate) and never get to experience the release that would allow us to move away from that.  Our reactions to trauma (oppression included as a kind of trauma) are really smart and brave and protect us from situations that we perceive as life-threatening.  However, over time when we get stuck in this place, we isolate ourselves, we get sick, we have a hard time moving forward, trusting, listening, being our fullest and most authentic and loving selves.   We can heal in many ways, but the healing modality(modalities) called “Somatics” names that one of the ways we heal, learn connection, and develop awareness of ourselves is by learning to notice what it feels like it our bodies when we feel bad and also what it feels like in our bodies when we feel neutral, calm, good.  According to somatics, this process is called pendulation (as we naturally swing like a pendulum between being triggered and being calm)—and the more we learn to track what pendulation feels like in our bodies, the more we can fully inhabit ourselves.  It’s like the process of developing awareness about injustice and oppression in the world: as we pay more attention and grow our understanding of what is going on to, for, and around us, we can struggle in ways that are more comprehensive, deep, and aimed at the roots of things.  The more aware of ourselves we are, the deeper our healing can be and the more healing we have to offer to the people around us. (For way more articulate explanations of trauma, somatics, tracking and collective liberation, check out Vanissar Tarakali’s blog and Generative Somatics.)

So for me, stories help me learn to ground myself more, to practice moving through crisis and stress and triggers to release and calm.  It is a practice, this learning to notice what resolution and ease feel like.  It is a practice, engaging with fantastical worlds to figure out how to move through this one.  In the space of dreaming and visioning that stories give me, their respite and illumination, it seems to me they are also teaching me some lessons about embodiment, about what it can feel like to heal ourselves, our communities, and our world.

Through learning how to be whole together we learn how to be whole ourselves.  Through learning how to be whole ourselves we learn how to be whole together.

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Filed under healing justice, medical psychiatric industrial complex, mental health, resilience, somatics, speculative fiction, story telling

values and truths, or my chief complaint is oppression

So it all started when I got obsessed with Grey’s Anatomy.    I don’t watch that much TV, but when I do, I can get wrapped up in melodramatic plot lines like the way a cat can get into a ball of yarn.  There are some really smart critiques of it out there already, but what about  the ways that doctors depicted on TV shape how we relate to our own healthcare? As a health worker committed to untangling the lines, lessons, wisdoms, and scars we all carry in our bodies, as well as deciphering the impacts of trauma and oppression on individual and collective illness/wellness, this latest incarnation of The Heroic Doctor Show fascinated me.

Pop culture is a collective story.   It not only reflects dominant culture, but shapes it by embedding its stories, myths, and tales in our individual and collective heads.  Humans love stories, we are social, we like to tell each other what our days were like, we like to share words and names.   We tell each other stories as the basis of interaction, communication, figuring things out together, and just knowing what’s up in each other’s lives.  Stories are a foundation of community and of our selves.  We tell stories in order to understand our experiences.  The telling of stories is a way we actively make sense of our worlds.

The way stories spin out of television is obviously different than the way they come to us out of the mouths of our friends, families, communities.  We don’t get to talk back in any kind of meaningful way.  Sure, we can and do yell at our screens, but… Pop culture presents its stories as definitive: as normal, natural, trumping all of our individual experiences.  It tells us what our world is like, as opposed to asking us how we experience it.  It is the difference between speaking WITH and being spoken TO.  It is the difference between a conversation and a performance of which we are always and only the audience.  So the stories that the racist, sexist, heteronormative, classist, ableist media industry decides are worthy are portrayed on television.  The rest of our stories are invisible.

And we believe it—contrary to everything most of us experience daily, we believe what television tells us: that people can pull themselves up by their bootstraps, that being fat is about a disgusting lack of self-control, that young men of color are just waiting to kill all of us, including those of us who are young men of color ourselves.  Television’s insidious ability to wrap itself around our subconscious and deeply affect how we think is well-known: it is the basis for advertising.  Mainstream media is one of the primary tools that embeds white supremacy, heteropatriarchy, ableism, and capitalism into the cores of us.  It is a huge part of normalizing such an unjust system as the one we live, making invisible the privilege some of us receive at the expense of others, permitting the violence around us to go on.  It tells us which stories are true and which are not, or at least not worth paying attention to.   All of this shapes us, and therefore, the stories we tell about ourselves and each other.

So it’s a small leap to realize that the way hospitals, doctors, and the healthcare industry are depicted on television shapes how we interact with and perceive them.  Meaning medical dramas on TV affect how we think of our own bodies, capacities for healing, what we need in order to get well.  They shape our understandings of ourselves as people who interact with healthcare, creating  a world in which healthcare is done TO us, in which we receive it, in which we passively wait for doctors to cure us, to fix us, in which we give up our own intrinsic wholeness.     Grey’s Anatomy and other shows teach us to value a mainstream medicine that is high-intervention—meaning surgery, elaborate technology over wellness care, prevention, holistic medicines.

When I started watching Grey’s Anatomy, I started thinking about all the ways that we get information and form ourselves, our relationships to our own bodies and the bodies of others, our relationships to healing, to the healthcare system, to those we turn to for advice or authority or expertise or support, or some confusing combination of all those things.   Television is just one way, but it’s big.  We watch these shows, the many medical dramas around us, and we think, oh, it’s a little glamorous.  Patients are objects.  Doctors are just having hot sex and romantic escapades with each other all the time.  They are so sympathetic and sweet and well-intentioned.  We ask dumb questions.   We are moments that are either dull or life-changing in their stories.  The center of the healthcare experience is the doctor, the doctor, the doctor.  It’s not just that doctors star in the world of medical dramas: they star in real, live healthcare as well.

When I worked as a medical assistant at a community clinic, the paperwork I filled out every day included a space for writing the “chief complaint” of whoever was seeking medical care with us.  This terminology is commonly used in medical settings in the United States.    Complaint implies not fact, untruth, something that is subjective.   Everything I wrote down from the “patient’s” perspective was qualified with “patient states…”  Everything that was written by a doctor or nurse practitioner, even a medical assistant or nurse (lower on the hierarchy of knowledge) was stated as fact, as if it were objectively known, indisputable.  This most basic, taken-for-granted word choice matters.  It implicitly sets up a framework in which some people’s stories are more valuable/valued than others.  Some realities are just more real.

This plays out in concrete ways that affect our health and well-being, historically and currently.  Health disparities exist for many different reasons, but evidence and experience tells us that doctors don’t listen to most of us, in large part because of power and privilege differences.    Research has shown over and over again that doctors treat different clients differently based on perceptions and experiences of privilege and oppression. Doctors spend less time with, prescribe life-saving treatments less often, answer fewer questions from, and communicate differently with patients from marginalized communities. (In this link, check out especially the study called  “Physician communication style may depend on characteristics of breast cancer patients”.)

Most of us also know this from shitty doctor’s office experiences, when we haven’t been believed or listened to, when our knowledge of our own bodies has been questioned, when we have been talked down to, when no one has even taken the time to explain to us what is going on, when we have been subjected to things to which we did not consent.  Those of us who do not fit society’s ideal of the perfect body (white, straight, cis, male, rich, able-bodied, etc.) receive different care, different diagnoses, different treatments.  Our “complaints” more often go unheard because they are treated as just that, complaints.  Medicine is not objective: doctors exist in this racist, sexist, classist, homophobic, and ableist society just like the rest of us.  Their enactment of oppression and ignoring of our stories when we turn to them for care has killed and harmed marginalized communities and individuals for centuries.   The medical industry is just one more system that works violence, oppression, and trauma against our communities.

As a white person, I have been taught that I can trust doctors/the healthcare industry, but as a fat person, I avoid going to the doctor because of the ways I know serious things will be attributed to my weight as opposed to what’s really going.  A podiatrist wouldn’t treat me for a disabling foot problem unless I returned twenty pounds lighter.  One time I got a letter from my doctor’s office (ahem, Kaiser) saying that I had all the symptoms of Metabolic Syndrome, a precursor to Type 2 Diabetes.  The symptom set includes elevated blood cholesterol levels, blood pressure, and blood sugar levels.  I checked the numbers and saw that both my blood cholesterol and blood pressure were well within the normal limits, low even.  Because of my weight, I got sent a form letter claiming that I had a serious health condition that I didn’t actually have.  These are pretty small examples, compared to legacies and current practices of misdiagnosing, experimenting on, and denying people treatment in really severe and fatal ways, but it proves the same point.  Doctors have been actively taught to not listen to us: our stories have no value as compared with their interpretation of lab numbers, our appearance, what they expect our problems to be based on assumptions and stereotypes manufactured by oppressive systems.  It’s one of the problems with evidence-based medicine, but that’s another post.

This extends to our collective experiences too: the healthcare industry is not accountable to us and our health needs.  Controlled by corporate/pharmaceutical funding, when was the last time a hospital asked the people living around it what they most needed before constructing a new wing or starting some new research?  Someone, tell me please, if you can see any concrete ways in which the mainstream healthcare industry tries to be responsible to the communities it supposedly serves.

There is a new movement in mainstream medicine that has to do with listening more.  I remember an old co-worker telling me that she chose which med school she was going to because they had started having classes in which they teach doctors to listen to their patients.  How novel.  Narrative medicine is the academic discipline related to valuing the stories that patients bring with them into the doctor’s office as real and true and worth listening to.  Sure, that is all great and should be encouraged, but I think it still misses the point.  Even on Grey’s Anatomy they have a lot of conversations about listening to patients, some lip service to valuing our experiences and feelings.   Truly listening, hearing, and respecting stories includes owning up to the ways you have and continue to mess up.  It’s not enough to just start listening today, without unpacking the ways in which your personal experiences of privilege make you literally unable to hear what other people are saying and while still not being accountable to the trauma, violence, and oppression that the mainstream healthcare system has done.  What about the forced sterilization of women of color throughout the U.S. and led by the U.S. around the globe?  What about the invention of the speculum through violent, unconsensual experimentation on women in slavery?  What would it look like for doctors/healthcare providers to be accountable to oppression and violence that has been literally enacted by their own hands?

I want it all.  I want healthcare that meets our needs and I want us to create our own autonomous systems of healing.  Part of health/healing justice looks like those who provide healthcare actually listening to and respecting all of us.  There is no way to actually hear us without being committed to developing a healthcare that is actively struggling against racism, sexism, ableism, transphobia, classism, and homophobia.  When we take for granted the framework and language of mainstream healthcare and the oppressive systems intertwined with it, there is no way that we can hear what is really being said or work towards creating safer spaces where we want to start sharing our stories in the first place.

Part of health/healing justice also looks like us learning to trust and value our own stories and experiences, the wisdom in our bodies and minds.  It looks like sharing our truths and listening to others as a way of healing, living more deeply in our bodies, being able to trace the outlines of our own scars.  As the brilliant Adrienne Maree Brown writes,

“in my experience the best storytelling is the best organizing…it’s rooted in a truth people have experienced, has some magic in it and something to long for, and a moment of beauty. but it is co-created as it is lived, no one can see the end of it. that allows people to stay in the present moment, and attend to the work before them with intention, seeing the story unfold with themselves in it, rather than directed, with themselves just outside the frame.

I see truth and magic and beauty in the many medicines we can and do and will create, medicines that are by and for us and our communities, that challenge oppression wherever it exists, that allow us space to truly heal from our trauma and our grief, that support us in building ourselves up, that unfold with our stories, with our lives.

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Filed under accountability, chief complaint, greys anatomy, healing justice, health justice, medical drama, medical psychiatric industrial complex, pop culture, story telling