Susan Raffo

Good Medicine: Honoring Aurora Levins Morales through thought and action

Filed By Susan Raffo | December 06, 2010 5:00 PM | comments

Filed in: Living, Living, Living, Media
Tags: Aurora Levins Morales, brain injury, disability justice, epilepsy, immune system, interdependence, Lyme disease, medication, Puerto Rican, stroke, Susan Raffo

A piece written in partnership with Aurora Levins Morales

Community.jpg Susan Who is your community? Seriously. Stop and take a moment to notice who you think of when you hear that word: community. What makes them your community? Is it just that you like to hang out together, having each other's back in a kind of social interlacing that means you know people when you go out to a club? Or is it deeper than that?

Community is one of those words that us queer people can sometimes exchange like candy. Our community, my community, the community. Often it just means the people we recognize on the street who seem to be "like us," or the people we know are out there but whose faces we've never seen. Community can be a commodity, something pulled out at specific moments to justify an action or an argument, and then neatly put back on the shelf until another time.

I am interested in community as something practical, something concrete that I could literally draw on a piece of paper with names, addresses and details. I am interested in community that is interdependent. In this kind of community, it matters if I show up. I am missed and I miss you. Our lives are intertwined.

Being raised in the US, I was raised to be an individual. It's something I'm pretty good at. I know how to talk about my rights, about my freedoms, my needs and the line between what is mine and what is yours. I wasn't raised to be a part of a collective, to intimately know the connections between us and to feel, as easily as I feel my own skin, the ways in which our lives are bound together.

This piece is offered as a place to practice learning interdependence with you, interdependence that comes from solidary rather than charity. Already shared through Facebook and a few other online spaces, we are also posting it here on Bilerico.

When you are reading this, please read it with two different approaches: first, if you have been touched by and learned from Aurora's words and work, consider being part of a circle with her as we talk about below. Second, take this piece and then think about it more locally, more up close to where you live. Who is your community? How do you show up for each other? And then teach me what you have learned.

There is still so much learning I have to do, so much learning to move away from the mine/yours way I was raised with to a bigger and more integrated ours.

It is part of our task as revolutionary people, people who want deep-rooted, radical change, to be as whole as it is possible for us to be. This can only be done if we face the reality of what oppression really means in our lives, not as abstract systems subject to analysis, but as an avalanche of traumas leaving a wake of devastation in the lives of real people who nevertheless remain human, unquenchable, complex and full of possibility.

Aurora Levins Morales, Medicine Stories

What is medicine? If you believe the pharmaceutical industry, it is a synthetic or naturally-derived substance that we bring into our bodies to make whatever is uncomfortable or painful go away. It usually names the things it is trying to change as "bad" and the effect of taking it as "good." We learn, when we take this substance, that other things might happen, side effects, as it were. These, we are told, are not important and can be noticed but ignored. What is most important, we are told, is that we get well in a very specific way.

Medicine is powerful. Medicine can help us or it can hurt us. Medicine is pushed at us, medicine is sold to us, medicine is something we take by choice. Medicine is power.

But not all medicine is what the pharmaceutical industry would have us believe. At its core, medicine is a substance we take into ourselves to shift some kind of pattern, to effect change. We do not always know what the results will be.

I have invited a lot of medicine across my life. Sometimes this medicine has been chemical, taking chamomile when I can't sleep, raspberry leaves when my cramps are strong. I have taken calcium and fish oil tablets, vitamin C and homeopathic remedies, Tylenol and antibiotics, steroids and clomid. I have had medicine that helped me to cry when the tears felt stuck inside. Sometimes that medicine has been a friend at the right time or a sudden cool breeze flashing across my heated face. And I have had a lot of medicine that has helped me become the kind of person I most want to be, to open the places that have been closed. This is medicine, an antidote if you will, to all of the insistence surrounding me every day, the insistence that I relax into my whiteness, focus only on my own family, buy more things. This illness of the isolated individual is an illness brought about by capitalism. There are medicines that can help.

Aurora Levins Morales has always been medicine for me. Her words, her thoughtfulness, her spirit fingers that seem to push right into the sore or vulnerable places while I am reading her words. Aurora has been good medicine.

So what do we do when one of our healers is struggling? What happens when the social harm of unmitigated capitalism, of forced individualism, of unexamined ablism ends up attacking one among us whose work has always been a gift to our greater healing? How do we respond?

Good medicine does not exist outside of a circle. When medicine is part of all of who we are then it is grown or created sustainably, making sure it is available for those who need it when they need or want it. It is never forced on a person or a community. It is never offered without great intent and awareness of its possible effect. This is not how most healthcare or systems of medicine work in the US. But this is the system that we can create. We can do it by paying attention to struggle when it shows up.

Aurora I live with the consequences of 20th and 21st century US and Caribbean society, with the unbridled commercial assault on our ecosystems, which include our bodies. Because of a genetic variation that makes my liver less efficient, the massive number of toxins we're exposed to accumulate in my body and make me sick. I live with constant chronic pain in my joints and muscles, with environmentally triggered complicated migraine that scrambles my nervous system, speech and motor control when I'm exposed to perfumes and a host of other things and led, in 2007 to a stroke; with a wildly overburdened immune system that thinks ordinary foods are enemies and throws me into emergency room crises over an accidental bite of spinach, with epilepsy that can strike me down and hurl me dangerously onto the floor head first, so that I've had repeated brain injuries leaving me speechless for months, and that can be set off by flash cameras, and of course by stress.

Recently I have developed diabetes, and have now tested positive for Lyme disease, including co-infections, probably acquired in the early 70s in New Hampshire, and possibly the cause of excruciating leg pains, many of the above symptoms, and small scars scattered throughout the white matter of my brain.

And like millions of others awaiting a clear diagnosis and effective treatment in the face of heavily vested interests against us, I live with severe, debilitating fatigue, an exhaustion so far beyond the meaning of tired that it needs a different language.

When I say fatigue I mean a powdery white sensation, like silently falling ashes. I mean an odd, painful tightness all over as if my skin were shrinking around me. I mean when the plugs in the arches of my feet are pulled out and every ounce of fuel drains away. I imagine it's my blood that you can see me turning white as the level drops, a sinking line of ordinary color like a receding tide. I mean the fine almost imperceptible tremor of muscles that just can't. Can't hold a book, lift a glass of water, pick myself up I mean the trip to the bathroom is a marathon something to summon up courage and strength for and then crawl back onto the bed, muscles cramping and shaking.

What all this means is that over a period of twenty years my ability to work has eroded away to nothing. I've been unable to work at all for five years. My elderly parents are supporting me out of their finite retirement fund. I need expensive medical treatment and many hours a week of attendant care. I can't go to most public events because everyone wears scented something and everyone carries a little flash camera. It's hard to meet people, make new friends, expand my circle. I can't travel to meet my readers and talk with them. I can't go to conferences, give readings, march in the streets, or go to most people's houses. I write slowly, painfully, seeking out tiny pockets of energy I can occupy with poetry, with essays, with the half dozen books in progress I have been holding inside me.

I know that what sickens and exhausts me is the same array of forces that sickens and exhausts the world, that I'm not alone in this struggle, that it's one struggle everywhere, but in the day to day effort of getting out of bed and sitting at this desk to put one word after another, most of the time I feel shatteringly alone, and this adds weight to my fatigue.

Susan There is always cost in speaking out against power. We all know activists, artists and writers, many of them women of color, many of them queer, many of them raised poor or raised hard, who have spent years giving voice to the truth of their bodies, being called crazy, being held to the side for what they have said and then, over time, the struggle has taken a toll. Many have died.

Part of visioning, of dreaming, and of creating whole communities where we operate out of love and sustainability, means remembering all of what and who brought us to our power. It means remembering the medicines we have taken that have cleared away the white noise and helped us to know ourselves, sometimes for the very first time. It means making sure that medicine is cared for, treated as a renewable resource, not something that we will use up until there is no more. It means recognizing that we are each connected to the other, that every one of us gets to determine for ourselves when we are "well" and when we are "unwell" and to then ask for what will support us. It means showing up for each other, remembering and feeling the ways in which our thoughts, our actions and our struggles are not separate.

Here is what showing up looks like. These are in Aurora's words, her request sent out to the community at large. Read her words and imagine acting:

Money: Very simply, send a check, go through PayPal, spread those resources a bit further. How does money translate?

$5 buys me 20 minutes of help, long enough to prepare a meal, or load the dishwasher, or take several phone calls or pieces of paperwork off my mind.

$10 buys a week of organic greens or two ink cartridges for my printer, two goat cheeses or 40 minutes of help which is long enough to do the laundry, or with luck, resolve an insurance billing problem, find and order a replacement part for something, or clear my desk so it's ready for me to write.

$15 buys me two hours of car share access so I can run errands on my own, or go up into the hills and be in nature for an hour.

$17 buys me an hour of assistant help, long enough to clean the kitchen, research some publishing options, or prep vegetables for the week, or a round trip paratransit ride to a specialist in San Francisco or the co-pay on a month of thyroid medication, or a quart of organic olive oil.

$20 buys me a disabled bus pass for a month, a poetry book, two weeks of high potency omega oil or an expedition with BORP, which takes disabled people into the wilderness and renews my spirit.

$25 buys two weeks of goat milk yogurt, one week of organic chicken, a book of history or liberation theory, or one day's rent.

$50 buys me an hour of consulting on how to build my chemically safe mobile home or a month of internet and phone service or a month's supply of the powder I use to remove toxins from my gut.

$75 buys me a pain-relief massage

$150 buys an IV treatment or nine whole hours of attendant care

$200 buys an appointment with the Lyme specialist or my integral medicine doctor, or two weeks of supplements.

$300 buys me a week of housing at VONA Writers of Color workshop or half a year of dental insurance.

$400 buys me three days of attendant care/assistant time, my weekly allowance. My home is clean and organized, I don't exhaust myself dealing with red tape, my papers are organized, and I have good food to eat. It buys a few hours in which I have the energy to write.

$500 buys me a week-long intensive at VONA Writers of Color workshop, or 1/100th of the chemically safe tiny mobile house I hope to live in.

If you live in the Oakland-Berkeley area, you can help with a ride to a doctor's appointment when I'm too tired to get there myself. Pick up my meds or groceries. Come over and chop up and cook some vegetables for me. Plant food and medicine in my garden. Water it. If you have a mold-free, chemically clean house in the country, offer me time there to be with nature and renew myself.

Technical help. Help me set up systems, software, tools that will save me energy and make sense to my injured brain. Help other people set up the technology that will let me lecture or read long distance in their classrooms, at conferences, in university auditoria, from my bed. Help me scan things, digitize audio tapes, edit images, record myself.

Tell people about my books. Buy them for yourself and for friends. Quote them on your facebook page. Solicit my writing for publication.

Find well-paid opportunities for me to speak, read, or teach via the internet. Invite me to participate via Skype in interesting discussions and projects.

Correspond with me. Visit my web site and join a forum. If you live near me, see if I want a (scent-free) visitor for a cup of tea. If you live far, ask if I'd like to visit by Skype. If you would love to talk about something with me, write to me and say so. If my work has moved you, write to me and tell me all about it, in detail.

Help me find other people who want to join me in building chemically accessible mobile co-housing based in Berkeley.

Help me develop a list of chemically safe houses I could stay in if I was well enough to travel, especially in Boston and Minneapolis, but other places, too.

Educate yourself and others about access and inclusion for the chemically, immunologically and neurologically injured. Stop wearing scented products in my name. You never know who you're hurting. Help create chemically safe social spaces. Invite me to them. Learn about disability justice and bring it into whatever you're doing.

Until either my body or at least a portion of the world around me recovers, I'm going to be physically isolated, but this doesn't mean I have to struggle alone. It's not just disability that isolates me; we live in a society that emphasizes the individual to terrifying extremes, so that our natural tendency to care for and be with each other is everywhere undermined.

We forget one another.

We don't automatically ask to share the burdens and delights of holding one another.

We don't collectivize struggles to make them lighter.

We don't cherish and honor our elders.

We're taught to hurry, to be busy, to feel overwhelmed by each other's difficulties.

We're taught to maintain, to make do with our own survival. It makes us reluctant to disturb the routines we've figured out will keep us afloat.

We forget that group survival is easier.

The culture of individualism leaves us ashamed when we need help, awkward and afraid to offer it.

We're taught to value privacy over intimacy. It's the cost of doing business in a profit-driven society, and I refuse to settle for it.

I have a strong spirit, but it's not inexhaustible. Fighting alone uses me up. Without you, my chances aren't that good. My generation of radical, feminist women of color has been dying young. My generation of radical feminist Jewish women, too. It takes a village to live. I am building a virtual village around myself, because it will keep me alive and because it will improve all of our chances. I have a lot to give, but it's not sustainable to give it without more nourishing relationships. I need money and volunteer labor, emotional, intellectual and spiritual connection, and help expanding my web until it's big and strong and flexible enough to support my work.

It starts by knowing each other, so I invite you to know me. My web site will be set up with an open forum and smaller discussion groups by invitation. I'm creating online classes and workshops, and joining conversations in other places via Skype. I'm easy to find on Facebook. I want people of all ages and origins in my life.

I want a wide network of people who feel connected to me, who befriend me, who seek me out to think with, to share stories, to ask how I am, to tell me how they are using what I have made, who will notice if I am missing. I want a band of fellow travelers, an extended family, people I can call on. I won't belong to the world where much loved artists die alone in poverty. I insist on a kinship web of people who will feed each other when there's not enough food, come to each other's rescue, and offer each other shelter, in defiance of all that splits us.

Susan I want interdependence and community as more than words. In order to do this, I have to practice. Awkwardly, intentionally, again and again, I have to practice. I don't know what it means to live in ways that support art-making and creativity, that fully supports those people who show up with the medicine that opens our lives up even further. I have grown up with the same things you have, a private medical system and a culture of shame that still and again, sees illness or disability as a personal problem and any act of support or aid as charity.

Transforming this means practice, daily and never ending practice. How do we show up for each other? How do we remember the things that have come before us - the people, the words, the experiences that have made us stronger and more whole?

Practice with me. Practice taking a moment to really think hard about what we do when one among us is struggling. If Aurora's words and work are part of what has touched you, made you go deeper and feel clearer about the world you want to create, then give back to the circle. This is what it means to be in community, to be in solidarity with those whose struggles are different from ours but whose lives are connected.

"Solidarity is not a matter of altruism. Solidarity comes from the inability to tolerate the affront to our own integrity of passive or active collaboration in the oppression of others, and from the deep recognition of our most expansive self-interest. From the recognition that, like it or not, our liberation is bound up with that of every other being on the planet, and that politically, spiritually, in our heart of hearts we know anything else is unaffordable."

Aurora Levins Morales

Send money to: PayPal account: Physical checks mean tiring trips to the bank. If you don't have access to PayPal send checks made out to "Susan Raffo" c/o RLM Arts 3745 Minnehaha Ave. S. Minneapolis, MN 55406 with "Aurora" in the memo line. Send letters to:

And please, forward this piece as broadly as you would like.

Susan and Aurora

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The article is really long and I'll admit to skimming it. I noticed the appeal for money at the end and thought I should go back through and see if it was something I'd be interested in donating to since I'd only skimmed it. (It's very dense without anything to break it up - making it very hard to read on a computer screen.)

But as I went though the piece again, I realized what it was I was missing. I have no idea who Aurora is or why I should care that she needs money. Nowhere in the article does it say who she is.

Can you fill in some gaps please, Susan, here in the comments section?

Hey Bil:

I would happily fill in some gaps and I'll do that by directing you to a page in the Voices from the Gaps project. This is the Aurora bio and gives information on what she has done:

But of course, that only tells part of the story. Aurora's voice speaks to a lot of activists who are trying to do their work from a place of truth-telling, culture and love. Her words touch those places inside, those places of longing for change as something more than just a legal right or an opinion. For many of us, her words have been part of how we have understood ourselves in the context of lifelong change: her words have touched this mix of politics, spirit, body and culture that makes me, for one, and many others feel whole in this work.

Aurora combines an incisive political gaze with a gift for storytelling that breaks me wide open so that I can learn from the best places inside of me.

This is a gift. It is different from - but related to - being able to form a good argument. It comes from how I want to live my life and my work as opposed to how I want to do my life and my work.

Aurora is part of a cadre of women writers of color who politically and culturally shaped many of us in the 1980s until today - all of the books published through Kitchen Table Press, the contributors to This Bridge Called My Back (of which she is a part), being part of Cuentos: Stories by Latinas...these were all cultural firsts that continue to inform aspects of queer life right now. Aurora is continuing with this work, asking questions from the place of living with a disability, asking questions about the links between Zionism and other forms of colonialism and doing all of this in a way that is personal and transformative. Her books, Remedios and Medicine Stories, were, I believe, ahead of their time. Many of the questions she raises about the role of trauma and healing in political movements are now being held and worked with in a number of ways around the country. Those books came out in the 90s, we are just catching up to understanding what she - and others - were telling us about.

I realize that this isn't specific- for that, you need to read her words. And they might or might not touch you in the same way.

Thanks for asking, Bil