Random vignettes and thoughts.
Wizard and I are alone this year. Our first. In very many years. We aren't travelling. We aren't seeing friends and family. We are seeing each other. And it feels good. We're drinking espresso, listening to slightly melancholy music and overly happy Christmas music, and making food in our new house: the first meal.
It's been a wild ride to get to this point of rest. The other night, we lost my wheelchair for a couple of minutes. The Wizard drives a two seater, so we have a bike rack onto which we bunjy-cord my chair. We were driving around SF, frantically trying to park in a hilly, residential neighbourhood. We backed into spots that were too small, turned around in garage ways, drove, accelerated, braked, and "OMG, your wheelchair's gone!" I laughed, disbelievingly. But, no. Wizard was right. The chair was gone; in fact, the whole attachment for the bike rack was gone. We couldn't believe we hadn't heard it fall. And then, the big question -- where the hell was it?
Wizard turned the car around, and we started backtracking. Up this street, down the next, zig zagging across the roads. Finally, we saw it lying on the sidewalk; it was still firmly attached to the bike rack. All safe and sound. On the one hand, I was relieved. On the other, I was already envisaging an insurance claim for new wheels... (Such a mercenary.) We will be securing the bike rack to the car a little more firmly -- it probably has something to do with the way the Wizard drives.
Yesterday, we received news that an old family friend had died. She was "supposed" to die in the summer, but, well, I imagine that we don't always die on schedule. My grandmother came really close back in October; she's "supposed" to be dead now, but she's still here. My mother-in-law was "supposed" to die two years ago, but she died this year. Now, we have news of this loss. We called her Auntie as a way of recognizing that our two families were going to be close; our mothers had met in nursing school and had known each other for a long while. The two women sustained their friendship with phone calls and the occasional coffee/lunch on Saturday. As time passed, we girls never quite managed to become friends with her boys, for the usual kinds of reasons of geography and scheduling. We met on holidays and saw each other at the occasional Saturday lunch. My family grieves with and for hers.
And speaking of mourning, today also brought news of another passing. This time of a bright, beautiful, clever, cynical, witty, gentle, principled human being. He, too, was not "supposed" to die this young. Some people when you meet them glow brightly and strongly. Even if you see a wisp of fragility under that light, you forget and turn towards the light and let it show you ways of being, of engaging, and committing. He, too, will be missed.
Our house is done. We've moved our some of our stuff in -- though we aren't actually sleeping here yet. We have to move the cat, and she is best moved at a time when we can be with her to settle her in. But we have a pretty tree, and tonight, we will cook our first meal. Unfortunately, as long time followers of this blog might know, I am no cook. So, it was always going to be a little chaotic if I had anything to do with the food. And I did. I shopped for things that I like to eat and thought I might want to eat. Wizard notices some facts -- no onion? No. No onion. I don't like eating onion in particular; I admit it is good for cooking, but it is not something I would think to buy. So, we have a collection of things I like to eat: chestnuts, walnuts, kale, plantain, ginger, yam, apple, red and yellow peppers, and ... a Sancerre.
As I write, the cooking is going well; the house smells of food and cooking. So, if you celebrated today, for whatever reason, and also if you holed up at home or escaped to a retreat, I wish you and yours gentleness and joy.
Friday, December 25, 2009
Thursday, December 24, 2009
Charity, One Non-Person At A Time
It's that time of year again. And sho'nuff, the faces and associated stories of people of colour and disabled people (not that they are separate, but you know what I mean) are among those making the annual rounds and front pages of various newspapers.
Though race and socio-economic status are often at issue, we don't usually ask for charity on the basis of social class or on the basis of blackness. We don't ask people to give on the basis of gender and orientation (though gender plays a big part in how people choose to give). We do ask for charity on the explicit basis of disability, so, for the moment, while recognizing that charity is complicated for all minoritized groups and that disability intersects all groups, I am going to focus only on disability related "begging."
My mailbox was so full this year with faces of those needing help. With some leaflets barely making it into the box, faces, usually, in black and white, faces of the hungry and cold, faces of disabled and homeless, faces of poverty and more stared out at me. People emailed and called (no one actually wrote) -- organizations needing money would preface their sorry tale with an anecdote -- the one who nearly died. The one who now has strength to live. The one who ...
I worry about the ones who ... who didn't make it. But we don't usually write about them.
I am angered by the exploitation of individuals for organizational support. In part, I know that this is "how it's done." A local organization whose facilities and services I use called me to "get my story." They were going to use me for fundraising. I was on the phone for half an hour; the interviewer struck me as greedy. Greedy for the details of my tragedy and overcoming. Greedy for the story of my pain and recovery. I didn't have a good feeling about this, but I hung in.
Then, my interviewer dropped a bombshell. They were not going to use my story in the newsletter -- I agreed to be profiled as a services user; I was willing to say how much I had benefited from being there -- they were going to use me as one of four profiles in a full size tuck-in advertising brochure in the local paper. Before I knew it, I would be one of them -- staring soulfully or perhaps glaring strongly as one who had "overcome." I would be the one of the reasons my neighbors, friends, the people in the store, my GP (oh god, no) gave money to help the handicapped.
In a recent NPR interview, Nicholas Kristof explains that studies show that people give more when the face of need is that of a single person (sorry, no link, it was just an interview that I caught the tail end of). Apparently, as a culture, we give pretty equally to either a sister or a brother in need, but put the two together and giving drops off sharply. This apparently is part of the wallpaper of philanthropy; everyone knows it. And everyone does it. It's the same kind of thing that journalists do. Almost every article you read leads with the human interest angle -- something you can "identify" with it or "relate to;" it's just personal information.
With disability and charity, however, the reflexive practice of adopting and selling a story to market the larger cause insidiously continues the historical "disability charity" model. On disability, charity, and narrative, see this wow post by The Goldfish. A brief, clear definition of the charity model can be found here. In this model, if you have images of happy people, it is a picture of happy, despite the looming tragedy. Happy in the face of ... Happy is, however, hard. The easier way to provoke people into giving is to create imagistic sound bytes of brokenness. Of can't. These things make it easier to give.
The trouble is, though, that all of this negative representation comes to overwhelm the average mundane disabled life and drown out the potential for happiness, adjustment, and functionality. Disability is hard. Dammit. It is HARD. But people conduct meaningful lives. Even when it is hard. The charity model doesn't allow for that normality. We must always be something akin to subhuman. Subhuman sells. Normal doesn't. It's easier to give to those who are so much worse off than you are. So much more deserving. So alien. So different. The tragedy of disability makes it easy; it's easy to feel good when giving to these unfortunates. A no-brainer. It is incalculably harder to recognize and acknowledge the humanity in someone, to see yourself in someone, and to give to a peer.
What if it helps? I have to ask this question. Does giving the money actually make a difference? If the person gets the wheelchair or food or clothes they need, is it worth it? I don't know how to answer this. It seems to me even that we are in the wrong if we are even posing this question. We should never have to choose between exploitation and satisfaction of basic needs. And the practice of charity relies, depends, on that transaction. If we participate in such transactions, it is too easy to see people as "cases." Look, for example, at the stories and the presentation of the people in the NYT's "Neediest Cases Fund."
I know there are other discourses of giving -- the "new philanthropy" has made several attempts to change how we practice charity: mainly by insisting on accountability, infrastructure, and systems rather than individuals. This kind of philanthropy attempts to adopt business-based understandings of achievement and accountability. It might be less personal in its aims. Overall, however, I think it is more of a cosmetic change -- wherever you look, even in systems based approaches, there is always somewhere (marketing, source, ....) a pitiful individual whose circumstance motivates the machinery around them.
The good news? I'm not sure. I feel compelled to rant. To stand up against the way things are done. To hope for respect and individual dignity. It's the only way I can believe in change.
(Yeah, I'm back from an unexpected blogging break).
Though race and socio-economic status are often at issue, we don't usually ask for charity on the basis of social class or on the basis of blackness. We don't ask people to give on the basis of gender and orientation (though gender plays a big part in how people choose to give). We do ask for charity on the explicit basis of disability, so, for the moment, while recognizing that charity is complicated for all minoritized groups and that disability intersects all groups, I am going to focus only on disability related "begging."
My mailbox was so full this year with faces of those needing help. With some leaflets barely making it into the box, faces, usually, in black and white, faces of the hungry and cold, faces of disabled and homeless, faces of poverty and more stared out at me. People emailed and called (no one actually wrote) -- organizations needing money would preface their sorry tale with an anecdote -- the one who nearly died. The one who now has strength to live. The one who ...
I worry about the ones who ... who didn't make it. But we don't usually write about them.
I am angered by the exploitation of individuals for organizational support. In part, I know that this is "how it's done." A local organization whose facilities and services I use called me to "get my story." They were going to use me for fundraising. I was on the phone for half an hour; the interviewer struck me as greedy. Greedy for the details of my tragedy and overcoming. Greedy for the story of my pain and recovery. I didn't have a good feeling about this, but I hung in.
Then, my interviewer dropped a bombshell. They were not going to use my story in the newsletter -- I agreed to be profiled as a services user; I was willing to say how much I had benefited from being there -- they were going to use me as one of four profiles in a full size tuck-in advertising brochure in the local paper. Before I knew it, I would be one of them -- staring soulfully or perhaps glaring strongly as one who had "overcome." I would be the one of the reasons my neighbors, friends, the people in the store, my GP (oh god, no) gave money to help the handicapped.
In a recent NPR interview, Nicholas Kristof explains that studies show that people give more when the face of need is that of a single person (sorry, no link, it was just an interview that I caught the tail end of). Apparently, as a culture, we give pretty equally to either a sister or a brother in need, but put the two together and giving drops off sharply. This apparently is part of the wallpaper of philanthropy; everyone knows it. And everyone does it. It's the same kind of thing that journalists do. Almost every article you read leads with the human interest angle -- something you can "identify" with it or "relate to;" it's just personal information.
With disability and charity, however, the reflexive practice of adopting and selling a story to market the larger cause insidiously continues the historical "disability charity" model. On disability, charity, and narrative, see this wow post by The Goldfish. A brief, clear definition of the charity model can be found here. In this model, if you have images of happy people, it is a picture of happy, despite the looming tragedy. Happy in the face of ... Happy is, however, hard. The easier way to provoke people into giving is to create imagistic sound bytes of brokenness. Of can't. These things make it easier to give.
The trouble is, though, that all of this negative representation comes to overwhelm the average mundane disabled life and drown out the potential for happiness, adjustment, and functionality. Disability is hard. Dammit. It is HARD. But people conduct meaningful lives. Even when it is hard. The charity model doesn't allow for that normality. We must always be something akin to subhuman. Subhuman sells. Normal doesn't. It's easier to give to those who are so much worse off than you are. So much more deserving. So alien. So different. The tragedy of disability makes it easy; it's easy to feel good when giving to these unfortunates. A no-brainer. It is incalculably harder to recognize and acknowledge the humanity in someone, to see yourself in someone, and to give to a peer.
What if it helps? I have to ask this question. Does giving the money actually make a difference? If the person gets the wheelchair or food or clothes they need, is it worth it? I don't know how to answer this. It seems to me even that we are in the wrong if we are even posing this question. We should never have to choose between exploitation and satisfaction of basic needs. And the practice of charity relies, depends, on that transaction. If we participate in such transactions, it is too easy to see people as "cases." Look, for example, at the stories and the presentation of the people in the NYT's "Neediest Cases Fund."
I know there are other discourses of giving -- the "new philanthropy" has made several attempts to change how we practice charity: mainly by insisting on accountability, infrastructure, and systems rather than individuals. This kind of philanthropy attempts to adopt business-based understandings of achievement and accountability. It might be less personal in its aims. Overall, however, I think it is more of a cosmetic change -- wherever you look, even in systems based approaches, there is always somewhere (marketing, source, ....) a pitiful individual whose circumstance motivates the machinery around them.
The good news? I'm not sure. I feel compelled to rant. To stand up against the way things are done. To hope for respect and individual dignity. It's the only way I can believe in change.
(Yeah, I'm back from an unexpected blogging break).
Wednesday, December 16, 2009
Transit Dingbattage in NYC
the last time I was in NYC ....
Honestly, I should have known better, but I had imbibed too much champagne at the time I decided to take the subway. I knew I would have to bump down the stairs at my local entry point, but I thought as I read the website that I would be able to take a passage way to get from Herald Square to Penn Station.
Quite why I thought that, in the six months since I last tried this, a new passage could have been built, I don't know.
Quite why I persisted in thinking this even as a stream of empty taxis passed me on the way to the station, I don't know. But thought it, I did. And because I thought it, I did it. (oh pleeeze don't let that be true for all the other things in my life) Strangely, though, it turns out that there is still no underground pass between 6th and 7th going to Penn Station. You have to come up to the street and walk. So, walk I did.
And there it was, looming before me -- the great maw of Penn Station, simultaneously sucking in and vomiting out people. It was rush hour. Those of you in the know will know that the accessible entrance is around the corner, about 3/4 down towards 8th Avenue. I know this; I direct taxi drivers there all the time. But the bubbles were still in my system, because there I was. I could feel the mouth sucking me towards it, closer and closer. And it got me.
The organization of crowds is possibly a fascinating subject. People walk on one side or the other quite voluntarily. In the case of stairs, some are reserved somehow for people coming up, others for people going down. That is, until you have a wheelchair user who can only go down on oneside (apparently always the wrong side). I was clearly still bubbly, because I decided I would just bump on down.
Definitely in the "never again" category. More stairs than I've ever handled before. Too many people coming at me (I was going the wrong direction). No exit point but down to the bottom. Sweaty hands or strangely slippy gloves. Grateful that there were only stairs -- would I have been stupid enough to have attempted the escalators?
It's been a while since the last time I scared myself silly. I'm always talking about body memory for dance; you'd think I'd remember the feeling of being physically scared. It creeps out from the gut and down and up and wraps around you. It produces a slightly cold and shaky feeling and there's that feeling of powerlessness as it takes over. Apparently, you're supposed to breathe.
I smile at the strangers offering help. "Of course, I'm OK. I'm just taking a break. I'm fine. No, I don't need you." I close my eyes and feel the wheels slip.
Honestly, I should have known better, but I had imbibed too much champagne at the time I decided to take the subway. I knew I would have to bump down the stairs at my local entry point, but I thought as I read the website that I would be able to take a passage way to get from Herald Square to Penn Station.
Quite why I thought that, in the six months since I last tried this, a new passage could have been built, I don't know.
Quite why I persisted in thinking this even as a stream of empty taxis passed me on the way to the station, I don't know. But thought it, I did. And because I thought it, I did it. (oh pleeeze don't let that be true for all the other things in my life) Strangely, though, it turns out that there is still no underground pass between 6th and 7th going to Penn Station. You have to come up to the street and walk. So, walk I did.
And there it was, looming before me -- the great maw of Penn Station, simultaneously sucking in and vomiting out people. It was rush hour. Those of you in the know will know that the accessible entrance is around the corner, about 3/4 down towards 8th Avenue. I know this; I direct taxi drivers there all the time. But the bubbles were still in my system, because there I was. I could feel the mouth sucking me towards it, closer and closer. And it got me.
The organization of crowds is possibly a fascinating subject. People walk on one side or the other quite voluntarily. In the case of stairs, some are reserved somehow for people coming up, others for people going down. That is, until you have a wheelchair user who can only go down on oneside (apparently always the wrong side). I was clearly still bubbly, because I decided I would just bump on down.
Definitely in the "never again" category. More stairs than I've ever handled before. Too many people coming at me (I was going the wrong direction). No exit point but down to the bottom. Sweaty hands or strangely slippy gloves. Grateful that there were only stairs -- would I have been stupid enough to have attempted the escalators?
It's been a while since the last time I scared myself silly. I'm always talking about body memory for dance; you'd think I'd remember the feeling of being physically scared. It creeps out from the gut and down and up and wraps around you. It produces a slightly cold and shaky feeling and there's that feeling of powerlessness as it takes over. Apparently, you're supposed to breathe.
I smile at the strangers offering help. "Of course, I'm OK. I'm just taking a break. I'm fine. No, I don't need you." I close my eyes and feel the wheels slip.
Sunday, December 13, 2009
What Does Functional Mean?
That question came up in a conversation today.
I was chatting with someone who rocks on access issues. We both acknowledged a truth that I think is too often forgotten -- makes note to self -- that while functional is contextual, contextual is often more complicated than situational.
I usually think of situational functionality as having the equipment you need to cope with whatever situation comes up. Going to party? Covered. Going shopping? Covered. Getting out of bed, down the stairs, and to the dining room table? Covered. I'm not trying to throw the baby out with the bathwater; these are, after all, important things. It's nice to leave the house. But I am also not happy with the "task oriented" approach as an automatic way of thinking about functionality.
I was shocked by the story an amputee friend told me about how she was issued one of those C legs (computer chip making the knee joint work, I think) She was an athlete and a professional in a quite physical field. She insisted that she would need more out of her legs then a "standard" issue prosthetic would give her. She was right, of course. And in the days of somewhat "rationed" healthcare, it was possible to justify this particular technology for this particular person. But what about the other people who weren't issued these particular devices because their projected tasks in life were not "athletic" enough to warrant paying for an expensive piece of assistive technology?
If your equipment needs are calculated primarily on the situations that you and your MD, OT, PT, etc. think you will encounter -- a kind of task oriented approach -- you will only have equipment that sets you up for a limited number of situations. What happens when you leave the known or anticipated? What are the tradeoffs that you have made? What kinds of life are less possible because they require you to push your body further than would be desirable? What would have happened if even as you discuss tasks and life situations, you, as my friend put it, "optimize for movement."
It is a small but telling distinction. Optimizing for movement would mean understanding that movement may be facilitated by the equipment but it originates, no, inheres, in the body. I'm using the word "movement" lightly here, simply because I have a mobility impairment. I hope that this conversation and attendant concepts of working from the body's potential could be valuable for people with other kinds of impairments, but I am not sure.
Understanding the body's capacity and desire to move (safely, gracefully, emotionally, expressively) should be the primary goal of all those who help and work with assistive technology. That would mean, in my ideal world, at least, that you don't think about trivial things like cost or whether I am worth an expensive prosthetic or whether I can get by without a powerchair until my shoulders get trashed (supply one so my shoulders don't get trashed). It means that you design equipment that not only moves me around the world but also enables me to interact and contribute. It means spending more so that I can maximize every last bit of my potential. Note, I here say potential and not condition. If you design and prescribe equipment according to condition, you design/prescribe "down." You adopt a medical perspective -- this is wrong; this is what I have to accommodate for it.
This last chunk is where I would transfer over from thinking about personal assistive devices to thinking about access. Just briefly -- if you approach access from the point of view of removing barriers, you will always be behind the curve: humans have a greater diversity of needs than even a team can imagine. If you design for the maximum movement and participation of every body in every way, smaller things like barriers fall aside. You begin to create spaces that nurture the body as we enter and pass through. You create spaces that are, in themselves, an experience.
A while back, I wrote about the excitement of going to the SFMOMA Sensate: Bodies and Design exhibit. It was a disappointment. Here's a section of the text that you read as you enter the space:
I was chatting with someone who rocks on access issues. We both acknowledged a truth that I think is too often forgotten -- makes note to self -- that while functional is contextual, contextual is often more complicated than situational.
I usually think of situational functionality as having the equipment you need to cope with whatever situation comes up. Going to party? Covered. Going shopping? Covered. Getting out of bed, down the stairs, and to the dining room table? Covered. I'm not trying to throw the baby out with the bathwater; these are, after all, important things. It's nice to leave the house. But I am also not happy with the "task oriented" approach as an automatic way of thinking about functionality.
I was shocked by the story an amputee friend told me about how she was issued one of those C legs (computer chip making the knee joint work, I think) She was an athlete and a professional in a quite physical field. She insisted that she would need more out of her legs then a "standard" issue prosthetic would give her. She was right, of course. And in the days of somewhat "rationed" healthcare, it was possible to justify this particular technology for this particular person. But what about the other people who weren't issued these particular devices because their projected tasks in life were not "athletic" enough to warrant paying for an expensive piece of assistive technology?
If your equipment needs are calculated primarily on the situations that you and your MD, OT, PT, etc. think you will encounter -- a kind of task oriented approach -- you will only have equipment that sets you up for a limited number of situations. What happens when you leave the known or anticipated? What are the tradeoffs that you have made? What kinds of life are less possible because they require you to push your body further than would be desirable? What would have happened if even as you discuss tasks and life situations, you, as my friend put it, "optimize for movement."
It is a small but telling distinction. Optimizing for movement would mean understanding that movement may be facilitated by the equipment but it originates, no, inheres, in the body. I'm using the word "movement" lightly here, simply because I have a mobility impairment. I hope that this conversation and attendant concepts of working from the body's potential could be valuable for people with other kinds of impairments, but I am not sure.
Understanding the body's capacity and desire to move (safely, gracefully, emotionally, expressively) should be the primary goal of all those who help and work with assistive technology. That would mean, in my ideal world, at least, that you don't think about trivial things like cost or whether I am worth an expensive prosthetic or whether I can get by without a powerchair until my shoulders get trashed (supply one so my shoulders don't get trashed). It means that you design equipment that not only moves me around the world but also enables me to interact and contribute. It means spending more so that I can maximize every last bit of my potential. Note, I here say potential and not condition. If you design and prescribe equipment according to condition, you design/prescribe "down." You adopt a medical perspective -- this is wrong; this is what I have to accommodate for it.
This last chunk is where I would transfer over from thinking about personal assistive devices to thinking about access. Just briefly -- if you approach access from the point of view of removing barriers, you will always be behind the curve: humans have a greater diversity of needs than even a team can imagine. If you design for the maximum movement and participation of every body in every way, smaller things like barriers fall aside. You begin to create spaces that nurture the body as we enter and pass through. You create spaces that are, in themselves, an experience.
A while back, I wrote about the excitement of going to the SFMOMA Sensate: Bodies and Design exhibit. It was a disappointment. Here's a section of the text that you read as you enter the space:
Since classical times, the human body has served as a unique point of reference for architecture and other design disciplines. Considered an extension of divine presence and characterized in literature as the "paragon of animals," humans were thought to embody such ideal qualities as symmetry, purposeful form, a clear hierarchy of parts, and firm, smooth skin; buildings and objects in turn have often been designed to reflect these qualities. More recent theoretical and built work, however, has radically considered the nature of the body and its relationship to the designed world. Mutant bodies, fractured bodies, pregnant bodies, Siamese bodies, bodies in a state of decline: these variations now appear equally as real to us as the idealized bodies that design once reflected and thereby tried to consolidate.The language of difference aside -- if the author actually thought of difference as variation, I'd expect a more neutral set of terms -- the perspective is precisely what I am talking about. If you think only of barriers, of the way bodies fall short of the classical ideal, of the dissymmetries and fractures, you get a certain set of relationships of body to assistive technology and body to life. Design and prescribe, however, for movement -- or the maximum potential of the body -- and I believe you will see, in the classical liberal arts humanistic sense, the very best of who and what we can be.
Saturday, December 12, 2009
Trauma Matters
I received the following in an email and will be following the project. I am particularly interested in the connection between individual trauma and justice -- the movement aspect. All too often, I see/read/hear about the experience and prosecution of trauma as an individual experience: an isolated case, a person's story, a happening. I know in the back of my mind that it isn't so, but I don't know much more about community, movement, and trauma.
So, here it is -- I mildly altered the formatting because the cut and paste didn't work out so well.
Call for submissions: Icarus Scarsongs Trauma Reader
SCARSONGS
An Anthology Articulating the Terrain of Trauma and Resilience
Trauma matters.
When safety and connection are shattered, when we live through pain and horror, when we experience mutual support and resilience, fault lines erupt across our lives and divide our communities. Exploring the fallout is not a sign of weakness; it is an essential part of preparing to rejoin struggles for sanity, peace, and liberation. When we spend time healing and articulating the contours of our experience, we become capable of illuminating the way for others and building a movement that can sustain itself in the long term.
We believe it is time for a reader that tells our stories and gathers our poems, radiates with our art and speaks our thoughts. Understanding and being able to relate, calling out and hearing other voices can help us to find individual and collective strength in the face of political, ecological, social and personal trauma.
Your input can be very valuable to other people.
This project is a collaboration of the Icarus project, the Bay Area Radical Mental Health Collective, and Activist Trauma Support. Our aim is to create a beautiful, creative, readable document about trauma and resilience, drawing from a diversity of communities and backgrounds and addressing a wide range of topics and experiences.
We invite submissions in a range of formats, including, but not limited to, essays, interviews, stories, poems, songs, illustrations, photographs, paintings, and collage. We invite submissions on:
We understand trauma as self-defined and submissions can stay anonymous if desired.
The deadline for submissions is March 21st, 2010. You can also send us your ideas and ask for feedback on whether they would fit.
For more info and submissions, email: scarsongs@gmail.com
So, here it is -- I mildly altered the formatting because the cut and paste didn't work out so well.
Call for submissions: Icarus Scarsongs Trauma Reader
SCARSONGS
An Anthology Articulating the Terrain of Trauma and Resilience
Trauma matters.
When safety and connection are shattered, when we live through pain and horror, when we experience mutual support and resilience, fault lines erupt across our lives and divide our communities. Exploring the fallout is not a sign of weakness; it is an essential part of preparing to rejoin struggles for sanity, peace, and liberation. When we spend time healing and articulating the contours of our experience, we become capable of illuminating the way for others and building a movement that can sustain itself in the long term.
We believe it is time for a reader that tells our stories and gathers our poems, radiates with our art and speaks our thoughts. Understanding and being able to relate, calling out and hearing other voices can help us to find individual and collective strength in the face of political, ecological, social and personal trauma.
Your input can be very valuable to other people.
This project is a collaboration of the Icarus project, the Bay Area Radical Mental Health Collective, and Activist Trauma Support. Our aim is to create a beautiful, creative, readable document about trauma and resilience, drawing from a diversity of communities and backgrounds and addressing a wide range of topics and experiences.
We invite submissions in a range of formats, including, but not limited to, essays, interviews, stories, poems, songs, illustrations, photographs, paintings, and collage. We invite submissions on:
- The wounding and the pain - abuse, assault, rape, war, death, police brutality, oppression, physical and structural violence, ritualistic and systematic abuse, natural disasters, catastrophic and chronic illness, birth and generational trauma, and political repression. Fear, anxiety, panic, dissociation, nightmares, addiction, post traumatic stress, depression, self-mutilation, self-harm, suicide.
- The healing and resilience - community support, creativity, grieving, nature, self-care, personal ritual, expression, therapy, activism, holding abusers and oppressors accountable, connecting with allies, looking inwards and speaking out.
- The importance of trauma work to building movements of collective liberation and social justice.
- Experiences of trauma support on an individual, community and political scale.
We understand trauma as self-defined and submissions can stay anonymous if desired.
The deadline for submissions is March 21st, 2010. You can also send us your ideas and ask for feedback on whether they would fit.
For more info and submissions, email: scarsongs@gmail.com
Wednesday, December 9, 2009
Disability Privilege
A while back in the comments to my Glee post, I was accused of having "no empathy at all for those of us not in wheelchairs or are not professional wheelchair dancers." This tickled me pink! I was exerting some kind of disability dancing privilege. I laughed to myself off and on for a couple of days, but then I got to wondering. What would disability privilege look like? Could there be disability privilege? How would you define it?
The internet freely supplies (link is to google search for PDF versions) Peggy McIntosh's list of "white privileges" and so I thought I would mess around with some examples. The thing is, though, I couldn't do it. I simply could not come up with honest examples of disability privilege, but I could come up with examples of how you could make a list that deals with disability stereotypes as pertaining to privilege. So, I thought I would just run the first two or three and see what happens.
I can if I wish arrange to be in the company of people of my race most of the time.
This one is social. It's about the intentional company that we keep. I'd have to have a disabled family, only disabled friends, and only disabled colleagues. Not happening. Disabled people are not a majority. I do have a lot of disabled friends and disabled colleagues, but I also live in a bubble.
My sarky self reminds my better self of an alternate version, the "We're all a little bit disabled, so why can't you ...." Why can't you stop taking from us hard workers -- using those benefits and privileges you haven't earned?
I can avoid spending time with people whom I was trained to mistrust and who have learned to mistrust my kind or me.
Not happening here. I have to leave my house and face the non-disabled world. I need to access services and care from the non-disabled world. I believe in the diversity of disabled and nondisabled worlds. It's a core principle; denying diversity means denying who and what I am.
Sarky me says that for this to be true, you would have to see disabled people in all our diversities as a "kind." Hmm. Interesting. What would that look like? How would the world be different?
If I should need to move, I can be pretty sure of renting or purchasing housing in an area which I can afford and in which I would want to live.
This is true for me, thanks to the Wizard. But it is an individual privilege -- not one based on my membership in the class of disabled persons. It is certainly a luxury and, yes, a privilege arising primarily from my partnership (our marriage) and, indirectly, from the societal forces that acknowledge it. It is also a consequence of the Wizard's success -- how much of that is dependent on non-disability, I don't know. Without him, I might well be in the same position as so many other people I know and read about. Accessible affordable housing is a real issue. We hear about redlining with regard to race, but how and where do we talk about disability and housing? Even contemporary discussions of visitability are few and far in-between.
Sarky self can't think of a way to make this true. Institutional residences, group homes, and other facilities are controversial and complicated; I don't feel ready to make jokes about them.
I can be pretty sure that my neighbors in such a location will be neutral or pleasant to me.
I kinda think that this one is about involuntary association. And it is so disability dependent. As a wheelchair user, I am mostly unproblematic to people. But what if my impairment bore more social stigma? If I were the "crazy lady" down the street whose behaviour lowered the tone of the 'hood, I don't think people would be neutral or pleasant to me.
Of course, sarky self says, they might totally ignore me. I might be so invisible that I more than fit in; I vanish.
I can go shopping alone most of the time, pretty well assured that I will not be followed or harassed.
This one is hilarious. The moment I enter a store, I either disappear or I am pursued down the aisles by assistants, salesfolk, and other customers. Harassed by people wanting to help, I dodge and dive my way to the door. We disabled folk get so much attention from people. Oh! The privilege of it.
And wait! There's more. We get to use private shoppers; that's how one person at Macy's suggested I handle the awkwardness of shopping for wheelchair friendly clothes.
I can turn on the television or open to the front page of the paper and see people of my race widely represented.
Yeah! We are played -- emphasis on played -- everywhere. This season has been chockerblock full of nondisableds being disableds.
When I am told about our national heritage or about "civilization," I am shown that people of my color made it what it is.
I don't even know where to begin with this. When I think of an iconic figure -- let's just, say, go with Roosevelt -- and I think of how history has managed his disability .... What if disability changed how Roosevelt thought of policy? How much more could we know? What kind of society would we now live in?
Disabled people made the social safety net and now we overuse it. Yeah! That's how it goes.
I can be sure that my children will be given curricular materials that testify to the existence of their race.
I am so sure of this. We will be the victims and villains (link is to Vicki Lewis' book of the same title at Amazon), the welfare-medicare queens, the Tiny Tims, the twisted, drooling crippled fuckups in every and any class my kids (should I be allowed to reproduce) attend. And when the teachers run out of stereotypes, everyone in the class gets to make their own. Yes, disability day. Sit in a wheelchair, why don't you?
If I want to, I can be pretty sure of finding a publisher for this piece on white privilege.
Ha! I can barely write it in a serious sense, much less produce a long sensitive discussion. I want to be able to find ways in which disability culture and disabled life does confer privilege -- not because I believe in people getting and using privilege but because it would signal (albeit perversely) the arrival of disability as a mainstream societal and cultural force. Are there privileges associated with being a racial/ethnic minority? What about gender and sexual orientation? Are there any possible privileges if you identify with a minoritized group?
I can be pretty sure of having my voice heard in a group in which I am the only member of my race.
I am a good speaker, but that doesn't mean I will be heard. I have to get in the door, find a space at the table; I don't need interpretation, but if I did ... . Despite all this, I know that my voice will not only be heard; it will be simultaneously over and under heard, AND the things that I say will be take out of context. The moment I mention the "d" word, anything I say will become subject to the extra lens that people bring surrounding this topic. I will simultaneously become the voice of all disabled people and be invisible. I will dominate and stifle debate. And my single voice will be that of "you people." I'd better watch what I say.
The internet freely supplies (link is to google search for PDF versions) Peggy McIntosh's list of "white privileges" and so I thought I would mess around with some examples. The thing is, though, I couldn't do it. I simply could not come up with honest examples of disability privilege, but I could come up with examples of how you could make a list that deals with disability stereotypes as pertaining to privilege. So, I thought I would just run the first two or three and see what happens.
I can if I wish arrange to be in the company of people of my race most of the time.
This one is social. It's about the intentional company that we keep. I'd have to have a disabled family, only disabled friends, and only disabled colleagues. Not happening. Disabled people are not a majority. I do have a lot of disabled friends and disabled colleagues, but I also live in a bubble.
My sarky self reminds my better self of an alternate version, the "We're all a little bit disabled, so why can't you ...." Why can't you stop taking from us hard workers -- using those benefits and privileges you haven't earned?
I can avoid spending time with people whom I was trained to mistrust and who have learned to mistrust my kind or me.
Not happening here. I have to leave my house and face the non-disabled world. I need to access services and care from the non-disabled world. I believe in the diversity of disabled and nondisabled worlds. It's a core principle; denying diversity means denying who and what I am.
Sarky me says that for this to be true, you would have to see disabled people in all our diversities as a "kind." Hmm. Interesting. What would that look like? How would the world be different?
If I should need to move, I can be pretty sure of renting or purchasing housing in an area which I can afford and in which I would want to live.
This is true for me, thanks to the Wizard. But it is an individual privilege -- not one based on my membership in the class of disabled persons. It is certainly a luxury and, yes, a privilege arising primarily from my partnership (our marriage) and, indirectly, from the societal forces that acknowledge it. It is also a consequence of the Wizard's success -- how much of that is dependent on non-disability, I don't know. Without him, I might well be in the same position as so many other people I know and read about. Accessible affordable housing is a real issue. We hear about redlining with regard to race, but how and where do we talk about disability and housing? Even contemporary discussions of visitability are few and far in-between.
Sarky self can't think of a way to make this true. Institutional residences, group homes, and other facilities are controversial and complicated; I don't feel ready to make jokes about them.
I can be pretty sure that my neighbors in such a location will be neutral or pleasant to me.
I kinda think that this one is about involuntary association. And it is so disability dependent. As a wheelchair user, I am mostly unproblematic to people. But what if my impairment bore more social stigma? If I were the "crazy lady" down the street whose behaviour lowered the tone of the 'hood, I don't think people would be neutral or pleasant to me.
Of course, sarky self says, they might totally ignore me. I might be so invisible that I more than fit in; I vanish.
I can go shopping alone most of the time, pretty well assured that I will not be followed or harassed.
This one is hilarious. The moment I enter a store, I either disappear or I am pursued down the aisles by assistants, salesfolk, and other customers. Harassed by people wanting to help, I dodge and dive my way to the door. We disabled folk get so much attention from people. Oh! The privilege of it.
And wait! There's more. We get to use private shoppers; that's how one person at Macy's suggested I handle the awkwardness of shopping for wheelchair friendly clothes.
I can turn on the television or open to the front page of the paper and see people of my race widely represented.
Yeah! We are played -- emphasis on played -- everywhere. This season has been chockerblock full of nondisableds being disableds.
When I am told about our national heritage or about "civilization," I am shown that people of my color made it what it is.
I don't even know where to begin with this. When I think of an iconic figure -- let's just, say, go with Roosevelt -- and I think of how history has managed his disability .... What if disability changed how Roosevelt thought of policy? How much more could we know? What kind of society would we now live in?
Disabled people made the social safety net and now we overuse it. Yeah! That's how it goes.
I can be sure that my children will be given curricular materials that testify to the existence of their race.
I am so sure of this. We will be the victims and villains (link is to Vicki Lewis' book of the same title at Amazon), the welfare-medicare queens, the Tiny Tims, the twisted, drooling crippled fuckups in every and any class my kids (should I be allowed to reproduce) attend. And when the teachers run out of stereotypes, everyone in the class gets to make their own. Yes, disability day. Sit in a wheelchair, why don't you?
If I want to, I can be pretty sure of finding a publisher for this piece on white privilege.
Ha! I can barely write it in a serious sense, much less produce a long sensitive discussion. I want to be able to find ways in which disability culture and disabled life does confer privilege -- not because I believe in people getting and using privilege but because it would signal (albeit perversely) the arrival of disability as a mainstream societal and cultural force. Are there privileges associated with being a racial/ethnic minority? What about gender and sexual orientation? Are there any possible privileges if you identify with a minoritized group?
I can be pretty sure of having my voice heard in a group in which I am the only member of my race.
I am a good speaker, but that doesn't mean I will be heard. I have to get in the door, find a space at the table; I don't need interpretation, but if I did ... . Despite all this, I know that my voice will not only be heard; it will be simultaneously over and under heard, AND the things that I say will be take out of context. The moment I mention the "d" word, anything I say will become subject to the extra lens that people bring surrounding this topic. I will simultaneously become the voice of all disabled people and be invisible. I will dominate and stifle debate. And my single voice will be that of "you people." I'd better watch what I say.
Monday, December 7, 2009
Diagnosis of a Faun: Getting it Right.
H/t Lawrence Carter Long.
Why the Times (which had a great piece on GIMP, disability, and language -- here) had to go back to the maudlin overcoming story, I don't know. But here's how to get it right: the New York Metro News has a take on Diagnosis of a Faun that shows that there can be decent disability arts writing.
The difference matters to me -- not because I know I want to see a good piece; I *know* I will enjoy watching Mr. Mozgala; the video clip tells me so. It matters because disabled artists are so much more than the stories the press chooses to impose. We are more than the sum of our medically interesting (or not) parts. We are artists and performers who want to be reviewed on the strength of our work -- not the strength of our ability to overcome.
Disabled performers and, in particular, disabled dancers are not new in New York. Infinity Dance Theater's (Kitty Lunn) first season was in 1995. More recently, Heidi Latsky's GIMP was the dance darling. Now, Ms. Rogoff and Mr. Mozgala are before the critics. This succession of performers is, I hope, the beginning of a wave (everyone hopes that, I suppose).
The trite reporting of the medical narrative no longer (if, in fact, it ever did) no longer suffices to tell the story of the disabled dancers. How many pieces can you write? How "inspired" are you to go see such a work? The artists are there, changing mainstream dance culture. What will it take to change the writing of their stories?
Why the Times (which had a great piece on GIMP, disability, and language -- here) had to go back to the maudlin overcoming story, I don't know. But here's how to get it right: the New York Metro News has a take on Diagnosis of a Faun that shows that there can be decent disability arts writing.
Taking off from Vaslav Nijinsky’s sensuous 1912 forest fantasy, in which the mythic figure — part man, part goat — pursues lovely nymphs but ultimately sleeps alone, Rogoff gives her title role to 31-year-old actor Gregg Mozgala, whose cerebral palsy produces a somewhat twisted gait.They don't rave about the piece; in fact, they find it "not perfect." But the reviewer, Elizabether Zimmer, seems to be able to see beyond trite narratives of overcoming to assess the art of the dance itself: "Tamar Rogoff’s choreography is bold and true to her fantastic vision; her grasp of structure is somewhat less sure." I might disagree with this; I might agree. You might have yet another opinion. None of that matters. What matters is the difference between this short review and the more extensive, but less helpful NYT preview.
...
The duet that ensues is possibly the hottest thing currently visible on a New York stage.
The difference matters to me -- not because I know I want to see a good piece; I *know* I will enjoy watching Mr. Mozgala; the video clip tells me so. It matters because disabled artists are so much more than the stories the press chooses to impose. We are more than the sum of our medically interesting (or not) parts. We are artists and performers who want to be reviewed on the strength of our work -- not the strength of our ability to overcome.
Disabled performers and, in particular, disabled dancers are not new in New York. Infinity Dance Theater's (Kitty Lunn) first season was in 1995. More recently, Heidi Latsky's GIMP was the dance darling. Now, Ms. Rogoff and Mr. Mozgala are before the critics. This succession of performers is, I hope, the beginning of a wave (everyone hopes that, I suppose).
The trite reporting of the medical narrative no longer (if, in fact, it ever did) no longer suffices to tell the story of the disabled dancers. How many pieces can you write? How "inspired" are you to go see such a work? The artists are there, changing mainstream dance culture. What will it take to change the writing of their stories?
Thursday, December 3, 2009
Making An Entrance
Off and on, I will be posting some thoughts about movement, writing, walking, and dance over at flipfloppingjoy as part of the powerful community there; this following entry appears, a little differently, there, as well.
International Disabled People's Day is today. The UN Disability site writes (if a site could be said to write): "The Day provides an opportunity to mobilize action to achieve the goal of full and equal enjoyment of human rights and participation in society by persons with disabilities, established by the World Programme of Action concerning Disabled Persons, adopted by the United Nations General Assembly in 1982."
I only know one way to mobilize: I want a community of movers; I want to dance.
We explode onto the stage in heartstopping movement, lashing the floor, chiselling the corners; we're out of control and out of time. Too late, our protectors loosen themselves from their intense group focus. Too late, we shield them from the light. We stand aware of each other yet intensely alone. I know. I know we're too late to be saved because the ping has become a flatlining sound; it summons us forward. We're being counted; no, make that counted out -- from 16 to 5. When only five remain, we move forward to the very edge of the downstage to answer for what we have done.
The lights switch from behind us to in front of us. I know what's coming: the next 22 minutes will be hard. "Where you are now," her voice calls over the roar of the music. I examine myself and touch my wheels for security. "3, pause." The electric guitars struggle to rise above that flatlining sound; their scales fail and they sink back into a pedal note. Deep tubular bells ring what I try not to hear as a death knell. My arms fly out. "2, pause." We freeze. We are controlled, judged, by that voice.
The ping melts into a sustained note, a note that will be held at the core of the piece for the next 4 minutes; it wails about the melody line and anchors the chord structure. "Stop." Before I even know what is happening, my left side opens in an upward burst: arm and wheel shoot into the air, taking me off my center; I can see out of the corner of my eye that my colleagues are also in this fight.
The thing about performance energy is that it takes you; it eats you; you shouldn't attempt to control it. We're going faster than we ever have before. This is the most technically difficult section of the piece; we've done it a thousand times before in rehearsal; we know it. The performance energy shocks us to a new and more desperate speed. My heart is exploding; I'm begging the music to, please, release us, but that suspended note drives us on, with a perverted, demonic waltz-y beat. Waltz? No. There's no courtliness here; we turn like little dervishes, drilling into the marley. There's no hope. No release. We run, jump, turn, and defiantly face the music, chests upturned in a toreador pose.
The three non-disabled dancers leap in a diagonal before us; their lines shield us (the two remaining wheelchair users) from view; is there security here? Touch, withdraw, release. Touch, withdraw, release. Touch, touch, touch. We pass through their now frantic line; touch, withdraw, release is our alternative to their accelerating dance. I never know exactly when the tension dissipates, but it does. Somehow, the suspension resolves, the wailing is quelled by the crackle of electric guitars. We've passed safely through the flames; wherever we are, we've arrived.
The cool thing about this piece.... OK. One of the cool things about this piece is that it truly is movement-based. I said earlier that we had been counted down from 16 to 5; the other 11 dancers come from our local dance community and beyond. They are disabled, non-disabled, of a diversity of body types and ages. Some are professional; for others, dance is a passion they wish to explore further; in any case, they are all Bay Area dancers. And it is wonderful to be able to reach from the confines of the stage out to the community. As we invite others into our world; we learn from them and grow. So, it is that our dance movement becomes part of a larger, political movement that crosses the 4th wall of the stage (the invisible one) into the audience. When we say, "everybody (every body) can dance," we mean it.
As the piece develops, it turns out that arrival is no guarantee of safety. The five of us get ourselves into such darkness; we turn on each other and isolate a single dancer. It might be that we protect her; it might be that we are the storm, seducing her from security into a whirling oblivion. The community dancers enter the space, encircling us, communicating tranquility and security. All we have to do is turn to them and grab on. But you know how it goes: darkness sometimes is more alluring. They pass. We are alone. Downstage. Lost: there's no way back to the world of innocence.
One of us turns, slowly; I see her and turn to see what she has seen.
This bit always makes me cry. I'm crying as I write. From the wings of the stage, the community dancers give us soft, gentle light; the music returns, breathily. The sustained note is now a beacon. "Look. Look here. We are here for you," their faces seem to say. The fierce energy retreats; we know where and how to go, dancing our way to the upstage. The voice comes back, assuring us of our safety. We move, stop, move, stop, and slowly, the light fades.
The UN people probably didn't envision a group of dancers when they wrote "mobilize;" they almost certainly didn't think of the word in a military sense. One thing my dance life has taught me: Art is one helluva moving force.
International Disabled People's Day is today. The UN Disability site writes (if a site could be said to write): "The Day provides an opportunity to mobilize action to achieve the goal of full and equal enjoyment of human rights and participation in society by persons with disabilities, established by the World Programme of Action concerning Disabled Persons, adopted by the United Nations General Assembly in 1982."
I only know one way to mobilize: I want a community of movers; I want to dance.
We explode onto the stage in heartstopping movement, lashing the floor, chiselling the corners; we're out of control and out of time. Too late, our protectors loosen themselves from their intense group focus. Too late, we shield them from the light. We stand aware of each other yet intensely alone. I know. I know we're too late to be saved because the ping has become a flatlining sound; it summons us forward. We're being counted; no, make that counted out -- from 16 to 5. When only five remain, we move forward to the very edge of the downstage to answer for what we have done.
The lights switch from behind us to in front of us. I know what's coming: the next 22 minutes will be hard. "Where you are now," her voice calls over the roar of the music. I examine myself and touch my wheels for security. "3, pause." The electric guitars struggle to rise above that flatlining sound; their scales fail and they sink back into a pedal note. Deep tubular bells ring what I try not to hear as a death knell. My arms fly out. "2, pause." We freeze. We are controlled, judged, by that voice.
The ping melts into a sustained note, a note that will be held at the core of the piece for the next 4 minutes; it wails about the melody line and anchors the chord structure. "Stop." Before I even know what is happening, my left side opens in an upward burst: arm and wheel shoot into the air, taking me off my center; I can see out of the corner of my eye that my colleagues are also in this fight.
The thing about performance energy is that it takes you; it eats you; you shouldn't attempt to control it. We're going faster than we ever have before. This is the most technically difficult section of the piece; we've done it a thousand times before in rehearsal; we know it. The performance energy shocks us to a new and more desperate speed. My heart is exploding; I'm begging the music to, please, release us, but that suspended note drives us on, with a perverted, demonic waltz-y beat. Waltz? No. There's no courtliness here; we turn like little dervishes, drilling into the marley. There's no hope. No release. We run, jump, turn, and defiantly face the music, chests upturned in a toreador pose.
The three non-disabled dancers leap in a diagonal before us; their lines shield us (the two remaining wheelchair users) from view; is there security here? Touch, withdraw, release. Touch, withdraw, release. Touch, touch, touch. We pass through their now frantic line; touch, withdraw, release is our alternative to their accelerating dance. I never know exactly when the tension dissipates, but it does. Somehow, the suspension resolves, the wailing is quelled by the crackle of electric guitars. We've passed safely through the flames; wherever we are, we've arrived.
The cool thing about this piece.... OK. One of the cool things about this piece is that it truly is movement-based. I said earlier that we had been counted down from 16 to 5; the other 11 dancers come from our local dance community and beyond. They are disabled, non-disabled, of a diversity of body types and ages. Some are professional; for others, dance is a passion they wish to explore further; in any case, they are all Bay Area dancers. And it is wonderful to be able to reach from the confines of the stage out to the community. As we invite others into our world; we learn from them and grow. So, it is that our dance movement becomes part of a larger, political movement that crosses the 4th wall of the stage (the invisible one) into the audience. When we say, "everybody (every body) can dance," we mean it.
As the piece develops, it turns out that arrival is no guarantee of safety. The five of us get ourselves into such darkness; we turn on each other and isolate a single dancer. It might be that we protect her; it might be that we are the storm, seducing her from security into a whirling oblivion. The community dancers enter the space, encircling us, communicating tranquility and security. All we have to do is turn to them and grab on. But you know how it goes: darkness sometimes is more alluring. They pass. We are alone. Downstage. Lost: there's no way back to the world of innocence.
One of us turns, slowly; I see her and turn to see what she has seen.
This bit always makes me cry. I'm crying as I write. From the wings of the stage, the community dancers give us soft, gentle light; the music returns, breathily. The sustained note is now a beacon. "Look. Look here. We are here for you," their faces seem to say. The fierce energy retreats; we know where and how to go, dancing our way to the upstage. The voice comes back, assuring us of our safety. We move, stop, move, stop, and slowly, the light fades.
The UN people probably didn't envision a group of dancers when they wrote "mobilize;" they almost certainly didn't think of the word in a military sense. One thing my dance life has taught me: Art is one helluva moving force.
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