The National Youth Leadership Network (NYLN) is holding an exciting event!  It is called “Reap What You Sow: Harvesting Support Systems.”  It is a conference that looks at how to support young people in finding power and making their dreams realities.  NYLN is hosting a performance as a part of the conference. It features artists with SINS INVALID.  It is open to the whole community!

Please Note: This show will have sexual content.  Sins Invalid is working to  make their show youth-friendly while keeping it honest.

·      Date: 8pm Friday, July 30, 2010
·      Place: Hilton North Raleigh at 3415 Wake Forest Road
·      Tickets: $8 – $10 at door
·      Details: This show will be wheelchair accessible, sign language interpreted, and audio described.

NYLN is a non-profit organization led by young leaders with disabilities.  NYLN promotes youth leadership, education, and advocacy.  We make sure that youth with disabilities know how to set and reach their own goals.

This show is made possible by the North Carolina Council on Developmental Disabilities. For more information, visit www.nyln.org. To talk to NYLN Executive Director, Betsy Valnes, call us at 1-866-480-6565. You can also e-mail her at betsy@nyln.org.

Are you a writer who writes for the page who is trying to figure out how to bring your work to the stage? Do you feel weird or uncertain about how to use the stage or be present in your disabled or chronically ill body as you tell stories? Do you want to avoid Spoken Word Death syndrome, Oh Shit That Looks Like a Bad School Play Syndrome, and just find beautifully done ways of embodiying your stories? In this interactive workshop, we’ll talk about and practice simple ways of slowing down and performing your work for maximum impact. We’ll also explore how to move towards living in our disabled and chronically ill bodies, and do some exercises exploring how to bring movement, props, and staging into our performance.  Please bring a piece of writing (poetry, spoken word, hip hop, memoir) that you are interested in using as a performance piece.

Our workshops are open to anyone who is interested in exploring the intersection of sexuality and disability, regardless of prior experience in movement or writing.  If space becomes limited, we are prioritizing participants who identify as having a disability.  The space is wheelchair accessible.  Please refrain from using scented products, although we cannot guarantee a scent-free space.

blue boots

ever since I got these
solid, baby blue boots
straight women
and male bicycle couriers
of undetermined persuasion
now talk to me in elevators

so attired
with cornflower blue
soft woolen wrap
strangers feel compelled to caress
they hold an edge
in their hand in wonder
looking at me
go on I say
you know you want to
something primevaly comforting
as they brush their face against it

I sit on a bench
late at night
outside the closed mall
with my twin brother
the walking stick he carved me
between us
as we chew the rag
of our youth
a woman walking by
gives me the dirtiest downward look
don’t look at me in that tone of voice
i mutter under my breath
i reckon! bro says
he’s angry, confused

i’m used to it
people often look at me that way
welcome to my world
pick a reason
androgynous
queered
disabled
outspoken
elicits
contempt

people have
specific ideas
who fits in
and does not
where we should be
with whom
dressed how
what we can
and can not
be allowed
to do
and say

mostly
i stopped
taking
any notice
years ago

I will continue
to have
my say
in my work
sharing voice
with the un-fitting
in our perfectly
fitted
boots.

©  Meg Torwl

BIO: Meg Torwl is a writer, director and producer, working in media since 2000. With a background in photography, poetry and performance, and an interest in programming and new media. Balancing Acts in Calgary commissioned her to produce a 40 minute spoken word performance entitled ‘that’s so gay’ for their December 2009 Festival about solidarity across lines of gender, sexuality, disability, race, and species (in the case of purple star fish!). Her work has been published, performed, screened, broadcast and exhibited in New Zealand, Canada, USA, and the UK. She has worked in radio, producing and presenting 50 half hour programs (2007 – 2008) for One in Five, Radio New Zealand Nationals, a disability focused program, including a 6 part series on Disability, Relationships and Sexuality. She is a commentator with the NZ Disability Media Collective and she talks about her artistic practice as the Featured Creative of the Month in September 2009 with an interview on Creative Momentum. She has produced 3 new media projects and 4 documentary films, which are distributed by Video Out.

Her Radio Programs are on the web at: Radio New Zealand National and MeThings.com

You can read her blog at http://integrialmedia.blogspot.com/

Audio of in-valid by Meg Torwl, from a recording for RNZ, music by Eric Biddington

in – valid

pull your
own weight
stand alone
stand on
your own
two feet
four feet
six legs
six feet under
dig your toes in
keep a lid on it
under your hat
sit on it
sit tight
don’t just sit there
rise above it
get up
stand up for your rights
relax
take it easy
footloose
one foot in front of t’other
one step at a time
walk before you can run
look before you leap
for the high jump
take: a running jump
a flying leap
a hike
put your foot in it
can’t stand it
don’t take it
lying down
sleep on it
put it behind you
move on
walk away
turn the other cheek
a nods as good
as a wink
tunnel vision
blind
deaf
dumb
victim
sufferer
in-valid
bedridden
wheelchair bound
lame
get a grip
hold on
handle it
give me a hand
can’t stomach it
made my stomach turn
gutless
lily livered
got a gall
spineless
heartless
thoughtless
some nerve
brain dead
uncommunicative
non-responsive
life sucked out
coming up for air
gasping
give me some air
breathing space
stood in good stead
stood me up
just stood by
gawking
dribbling on
stand firm
stand tall
stand and deliver
money
or your
life

©  Meg Torwl

BIO: Meg Torwl is a writer, director and producer, working in media since 2000. With a background in photography, poetry and performance, and an interest in programming and new media. Balancing Acts in Calgary commissioned her to produce a 40 minute spoken word performance entitled ‘that’s so gay’ for their December 2009 Festival about solidarity across lines of gender, sexuality, disability, race, and species (in the case of purple star fish!). Her work has been published, performed, screened, broadcast and exhibited in New Zealand, Canada, USA, and the UK. She has worked in radio, producing and presenting 50 half hour programs (2007 – 2008) for One in Five, Radio New Zealand Nationals, a disability focused program, including a 6 part series on Disability, Relationships and Sexuality. She is a commentator with the NZ Disability Media Collective and she talks about her artistic practice as the Featured Creative of the Month in September 2009 with an interview on Creative Momentum. She has produced 3 new media projects and 4 documentary films, which are distributed by Video Out.

Her Radio Programs are on the web at: Radio New Zealand National and MeThings.com

You can read her blog at http://integrialmedia.blogspot.com/

Poetry is not a luxury: “it is through poetry that we give name to those ideas which are – until the poem – nameless and formless, about to be birthed, but already felt” (Audre Lorde)

This workshop will invite participants to deepen our truth-telling practice in community, through poetry. We will explore and write poetry of necessity.

About the workshop leaders:

VANESSA HUANG is a poet, writer, filmmaker, cellist, community organizer, and consultant who has worked to integrate cultural work and digital/social media with leadership development and movement building from the margins. She is a recent finalist for the 2010 Poets & Writers California Writers Exchange Award.

LEROY F. MOORE JR is a Black disabled writer, poet, and community activist who has authored a spoken word CD and chapbook entitled Black Disabled Man with a Big Mouth & a High IQ and created the Krip-Hop Mixtape Project. He is a cofounder of and frequent performer in Sins Invalid.

Sins Invalid is a performance project that incubates and celebrates artists with disabilities, centralizing artists of color and queer and gender-variant artists as communities who have been historically marginalized. Our performance work explores the themes of sexuality, embodiment and the disabled body where normative paradigms of “normal” and “sexy” are challenged, offering instead a vision of beauty and sexuality inclusive of all individuals and communities.

This event is wheelchair accessible. Although we cannot guarantee a scent free environment, we ask that people please refrain from using scented products for this event. Our workshops are open to anyone who is interested in exploring the intersection and disability and embodiment. Limit: 20 participants. If space becomes limited, we are prioritizing participants who identify as having a disability. For more information and/or to enroll, please contact: info@sinsinvalid.org or call 510-689-7198.

The variety of performances and acceptance of myriad artistic expressions can make it hard to pinpoint a particular focus for any theatrical production; however, this variety makes Sins that much richer and doesn’t take away from the power of the performances. Multimedia, spoken word, dance and episodic plays all contributed to the richness of this dynamic evening. Antoine-DeVinci Hunter utilized the entire stage to show the audience how he moves through the world, incorporating deaf culture and experience into his modern dance performances. The introduction to Sins Invalid was a kickboxing piece performed by Mat Fraser, who is brutalized by an invisible opponent. Fraser’s taunters are a continuous loop of fighting sounds and insults focused on his ability to be perceived as a sexually attractive being due to his disability. One particularly evocative piece, involving cofounder Leroy Moore and contributor Seely Quest, dealt with the medical perception of disability and its intersection with erotic fantasies.

An African American male patient in street clothes enters the scene of what appears to be a doctor’s office for his yearly exam, followed by a person dressed in a donkey suit carrying a video camera that remains focused on the patient throughout the performance. A Caucasian female doctor, dressed in a white lab coat, orders the patient to take a seat and undress, watching with increasing interest as the patient slowly removes his clothes to reveal a leather sadomasochism harness. An examination takes place with the doctor using medical tools to stimulate the patient’s erogenous zones, opening up questions of the medical community’s perception of disability as novelty.

Who has control in the scene is ambiguous—that the patient is wearing a harness implies a certain level of consent and subservience, with the dialogue reaffirming this dynamic. Throughout the piece the patient is heard to respond, “Yes doctor,” with what can be perceived as lust or longing. Among other questions, the doctor asks how many sexual encounters the patient has had in the last year and whether the patient’s disability lends him advantages during sex, reframing disability as a normative and potentially preferred sexual attribute. At one point the doctor puts a horse’s bit in the patient’s mouth, referencing the common practice during slavery of forcing men to wear bridles and move loads like animals. The S&M harness that the patient wears also further illustrates the perception that he is property rather than a full person.

The piece is brilliant—it comments on the audience as an animal of lust and opens the conversation to sadomasochism and questions of power and control. I would watch it again, but I understand that the performance would be difficult for some to watch. I respect this act for being a nuanced commentary on our society’s aversions to disability, race, and gender expressions outside of the accepted norm.

The variety of different performances encompassed in this one evening allowed Sins Invalid to cover a broad spectrum of disability. Sins Invalid succeeded in exposing the audience to the fact that there is more to disability than just doctors and diagnoses, stressing that it is possible and vital for this community to have sexuality fully incorporated into everyday life.

View the original blog

Terry Rowden

Sins Invalid’s Leroy Moore recently interviewed Terry Rowden, an Assistant Professor of English at the City University of New York, Staten Island. Terry is the author of The Songs of Blind Folk: African American Musicians and the Cultures of Blindness and coeditor of Transnational Cinema: The Film Reader.

Leroy of Sins Invalid: As a Black professor and author teaching and writing on topics of popular culture, transnational cinema and philosophy, do you have a personal connection to what you teach and write about? Please give some background on why you teach and write on subjects that you do.

Terry Rowden: My interest in disability emerged primarily from within my teaching and research interests in African American and queer literature once I began to realize that all marginalized social identities reproduce to some extent the dynamics of disability as both a social construct and a lived condition. Disability has a special force as a means of rewriting normalizing narratives because it occurs across all social groups and categories. My overall project as a scholar is to reveal that abnormality is really just a political construct used to ground social hierarchies. For instance, all people who live into advanced old age, simply for that reason alone, will eventually experience some lessening of physical functioning significant enough to remove them from the privileged space of normality and necessitate some type of social accommodation. Normalization is the watchword for conventional social politics and, as the word itself implies, disability is one of the most obvious forms of abnormality.

Leroy of Sins Invalid: In your work and in your book, The Songs of Blind Folk: African American Musicians and the Cultures of Blindness, I see a lot of parallels with disability and the work of Sins Invalid. Can you elaborate on these parallels?

Terry Rowden: My work relates to the work of Sins Invalid primarily because of my commitment to the celebration of difference and to revealing the difficulties that difference can create. In ways that I like to believe are congruent with the important work of Sins Invalid, I try to reveal in The Songs of Blind Folk the ways in which popular culture and performance can be particularly dynamic sites for the project of bringing often mystified and misunderstood differences into the light and rewriting the negative scripts that have positioned those differences as either substandard and unworthy of positive recognition or as evidence of miraculous transcendence of mundane realities.

I try to help my students understand that people who occupy marginalized positions must accept their conditions whatever they may be before they can celebrate them or present them as deserving of celebration or even just respect by the very people who may be consciously or unconsciously committed to either denigrating or condescendingly “tolerating” those differences.

Leroy of Sins Invalid: We are both music historians, and in The Songs of Blind Folk, you touch on the invisibility of Black blind female Blues artists. Can you expand on this for our readers?

Terry Rowden: As I wrote in The Songs of Blind Folk, the fact that blind and other disabled women were perceived as being particularly vulnerable made and continues to make the image of a blind woman on stage an uncomfortable one for audiences that have been much more willing to accepted disabled male performers. One of the things that I would like to do at some point is to more closely consider the career of Diane Schuur, the one blind female musician to achieve significant popular success. Over the course of a decades-long career that overlapped with those of superstar blind performers like Ray Charles, Stevie Wonder, and Ronnie Milsap, Schuur’s sporadic periods of real visibility as a jazz singer and musician have reinforced my sense that regardless of the form, blind female performers are alienating for audiences in ways that blind men simply are not.

Leroy of Sins Invalid: From your essays, The Songs of Blind Folk, and your upcoming book, Difference and Desire in African American Popular Music, 1890-1940, it seems to me that you are critiquing popular images of people who were oppressed and lacked the avenues to tell their stories, including African Americans who have more than one identity, such as those who are gay, lesbian, transgender and/or disabled. Is that correct and if so, how does it fit in to your goals as a writer?

Terry Rowden: That’s true. I believe that all types of oppression are interconnected. The play between visible physical disabilities and invisible differences like sexual preference, cognitive disabilities, and the disabling force of present or past states of incarceration is central to my work as a cultural critic.  Central to the marginalization and abuse of any group of people is some narrative that positions them as not just “different” but also as lesser and, more often than not, as unnatural. A major part of the work of progressive cultural critique is resurrecting or constructing counter-narratives that can delegitimate the standard narratives that do that negative work.

Leroy of Sins Invalid: In the abstract of your upcoming book you wrote “Although increasing amounts of work is being done on the sexual and gender dynamics of black women’s expressivity in blues culture, less work has been done on early black popular music as a specifically sexed and gendered phenomenon from male and transgendered perspectives.”  Why do you think that is so, and has the research process for your books been frustrated by of this lack of information?

Terry Rowden: Actually the information and material is there in droves. It’s just been a question of accessing it and revealing why it is relevant and what it has to teach us. Because most of the influential early writers on the blues and jazz were white heterosexual men, there was a tendency to either ignore queer performers or normalize them. Some writers like Gunther Schuller and Paul Oliver were so committed to establishing the manhood of jazz and blues performers that their work, while progressive and laudable in many respects, was woefully deficient in actually presenting a well-rounded picture of the social world that gave rise to these performers and to the real dynamics of their lives and music. When one revisits the body of musical work from that period, the number of songs that reference homosexual desire and/or transgendered identities is startling given how few of these songs have been considered and circulated as significant cultural documents.

Leroy of Sins Invalid: We are very interested in your essay, “A Play of Abstractions: Race, Sexuality, and Community in James Baldwin’s Another Country.” Why did you pick this story to critique and what was your conclusion?

Terry Rowden: Another Country was really the first Baldwin novel in which he tried to present a picture of social difference in which American racial and sexual minorities were in dialogue with each other. The fact that Rufus, the bisexual black man, is presented as being irrecoverably alien to the image of modernity that the author develops in the novel is troubling and reflects anxieties about black male homosexuality that I don’t think Baldwin ever quite overcame or reconciled with his self-chosen identity as a spokesman for black America.

Leroy of Sins Invalid: You recently showed the class you teach some of Sins Invalid’s video work. What were the some of your students’ reactions to it?

Terry Rowden: I showed your video “Forbidden Acts” and a range of Sins Invalid videos in class and then directed my students to the Sins Invalid website for a follow-up discussion. Over the course of the two discussions some of the students were obviously taken further outside of their comfort zones than I expected. Their reactions made it clear to me, and more positively to many of them as well, that when it came to physical difference and especially to the sexuality of the physically impaired, they were conservative and even prejudiced in ways of which they weren’t aware. Fortunately, the discussions also suggested that their responses were often the results of surprise and lack of familiarity rather than deep-seated resistance to the issues that Sins Invalid’s work brings to light. After the initial shocks, the aesthetic beauty of the performances often served as their way of entering into a dialogue with the cultural politics.

Leroy of Sins Invalid: When I was told about your book, The Songs of Blind Folk, I was thinking, “Finally, African American and Disability studies are coming together!” As a professor who is Black and not disabled, do you see that coming together happening more now in academia? And as an ally of the disability community, how do you see your role in this happening?

Terry Rowden: As an ally of the disability community, I see my role as to make sure that as disability studies becomes a more legitimated academic space, the particular issues of people of color and sexual minorities will be recognized within that discourse. It is important to make it clear that disabilities are not just conditions that some people have. They are conditions that have different ontological, cultural, and political specificities and histories. Organizing my teaching and research around those differences is my way of crafting a disability studies perspective that will, hopefully, avoid the sentimentalism and homogenizations that have bedeviled much identity based research and pedagogy.

Leroy of Sins Invalid: This is a question that I ask many writers/activists, both in and outside the walls of academia. How can we break down these walls to make a highway of learning, publishing and shaping the next generation using a combination of street knowledge and paper credentials?

Terry Rowden: As cultural studies and engaged forms of scholarship become more accepted as valid forms of work in the humanities, I think many of these walls will fall under the weight of their own obsolescence. This interview itself is, I believe, a sign that this is happening.

Leroy of Sins Invalid: What are your next projects and will they include a focus on disability?

Terry Rowden: In addition to the book on sexuality and gender in early black popular music, I’m working on a book on the use of pornographic narrative structures and images in African American men’s fiction.

Leroy of Sins Invalid: Any last words?

Terry Rowden: I’m grateful to you and Sins Invalid for the opportunity to discuss these issues and for the interest that you have shown in my work.

Sins Invalid is please to announce the February 23^rd release of the latest novel by Elaine Beale, Sins Invalid friend and Advisory Board member.

Another Life Altogether is a coming-of-age and coming out story set in the 1970s in Elaine’s native England. The novel tells the story of thirteen-year-old Jesse Bennett, an engaging, wry and utterly sympathetic narrator struggling to come to terms with her attraction to girls. Living in a remote East Yorkshire village with her emotionally disabled mother and an eccentric and sometimes criminally inclined family, Jesse’s journey is far from smooth.

Another Life Altogether has received advance praise from Sara Gruen, the bestselling author of Water for Elephants. Gruen said of the novel: “Another Life Altogether captivated me from the very first page. Dazzling in its authenticity and utterly absorbing, it is an uplifting story about adolescence, family, and finding one’s place in the world. With the character of Jesse Bennett, Elaine Beale manages to create hope and humor in an otherwise turbulent world. It is a rare, insightful, and gorgeously written novel.” And, in an early review of the novel, Feminist Review commented: “Another Life Altogether is an extraordinary true-to-life book, and Beale tells a number of important and poignant stories all at once with great skill.”

Beale is thrilled that the book has finally made it out in the world. “It’s a book I absolutely needed to write,” she says. “But it almost didn’t get written.”

She started working on the book in 2000, but after she got a draft of 200 pages, the manuscript stalled. “I got stuck,” Beale says. “And some challenging things like illness and my mother’s sudden death got in the way.” Then, in 2007 she won the Poets & Writers California Writers Exchange Award in fiction for the novel’s first chapter. The contest prize was a trip to New York to meet with editors and agents, and it was there that Beale met Cindy Spiegel, VP at Spiegel & Grau. “Cindy expressed great enthusiasm for the book after she read what I had of the manuscript,” says Beale. “Her interest was a huge boost for my confidence. I hadn’t been sure I could finish the novel, but knowing someone might actually publish it put a fire under my butt. It took me several years to write the first 200 pages; I wrote the last 200 pages in less than ten months.”

While Another Life Altogether is not necessarily autobiographical, it is certainly informed by Beale’s experience. “I grew up in East Yorkshire in a place very similar to the place where Jesse lives. It was  very culturally isolated in a lot of ways—a place where it was hard to be different, and almost impossible for a young person to come out as lesbian or gay. While I have a great fondness for my hometown and the people there, when I was a teenager I lived for the moment when I’d be able to move away. Jesse’s story is ultimately one that’s hopeful, but the challenges she faces are very, very real. And unfortunately many of those challenges still exist today.”

Elaine Beale immigrated to the U.S. in 1989. She lives in Oakland with her partner of fifteen years and their goddaughter. She will be reading from her book at several locations in the Bay Area. More information can be found at her website: www.elainebeale.com.

ANOTHER LIFE ALTOGETHER
Elaine Beale
Spiegel & Grau
On Sale February 23, 2010
$26.00 ▪ ISBN: 978-0-385-53004-0

Publicity Contact: Kristina Miller ▪ krmiller@randomhouse.com ▪ 212-572-2858

photo by Pamela Juhl

By Leroy Moore

Watch Leroy Moore’s three-part interview with Staff Benda Bilili.

I like it when things come together!  I can’t ask for anything better.  November 1^st, 2009 wrapped my family, disabled musicians, traveling and my forty-second birthday all into one big present to myself!

For two years I’ve been researching disabled street musicians Staff Benda Bilili, who live near the grounds of the Kinshasa Zoo in Kinshasa, Democratic Republic of the Congo.  They released their debut album Tres Tres Forte in March 2009, and were invited to perform at the annual World Music Expo (WOMEX), which has moved to Copenhagen. Denmark. Copenhagen is also home to my sister, Pamela Julh, and her lovely two children. I had no excuse not to go and visit with my sister and nephews and at the same time meet and interview the members of Staff Benda Bilili with the Copenhagen Voice, a media outlet that my sister started.  Yes, both my sister and I are journalists for the people!

WOMEX, an international festival that brings together artists from the worlds of folk, roots, ethnic and traditional music, also produces concerts, conferences and documentary films. It offers networking as an effective means of promoting music and culture of all kinds across borders. This year WOMEX announced their 2009 awardees, which was Staff Benda Bilili!!!

There were many reasons why Staff Benda Bilili caught and held my attention – and a central one was seeing an all disabled band singing deeply about the issues they live with, like poverty, homelessness, disability and street kids. As a Black disabled activist, as a journalist, poet and lover of music, it just blew me away.

The members of Staff Benda Bilili are: bandleader Ricky Likabu, singer/guitarist/lyricist Coco Ngambali, soprano singer Theo Nsituvuidi, singers Djunana Tanga-Suele, Zadis Mbulu Nzungu and Kabamba Kabose Kasungo, bass player Paulin ‘Cavalier’ Kiara-Maigi, drummer/singer Cubain Kabeya, percussionist Randy Buda, and finally Ricky’s adopted 17-year-old Roger Landu.  Roger created his own instrument that is called a Satonge, a one-string guitar (read more about Roger’s instrument) Although the whole band was present for the interview, Ricky and Michel (the manager) were the representatives during the interview.

Staff’s songs and lyrics tell the life of poor people in the Congo.  One of the eleven songs on the CD is Tonkara, which talks about street kids who sleep on cardboard outside.   Ricky said they live & sing on the streets.  The first track of Staff’s CD is entitled Moto Moindo which translates to Black Man.  It’s a song warning Black men about what is happening in Africa, how our food, the earth, and nature is being corrupted, so Black Men should stand up, come together and take action.  On the theme of community building, Staff used to have a center in Kinsasha where they taught street kids how to build musical instruments, wheelchairs and play music, however it was bombed some years ago – by who is unclear.  Now local businesses in the Congo along with US based private organizations and individuals in the US are supporting the process of re-building the center.

When I first heard this band, what made me love them was more than their music were their political views about life in the DRC as people living in poverty and as people with disabilities. I was surprised and disappointed when their manager responded to my questions about their statement of being “the real journalists of Kinshasa” with saying that there was a “misunderstanding” and “some journalist made the quote”, but the group never said that.  Strange, because it says it right there in the liner notes of their CD.  I also recognize that Staff members were very tired as well as dealing with a whole new way of living – on tour.  Denmark’s cold weather, their new wheelchairs, different clothes, having to get used to new foods, all the reality of traveling and being managed must be a challenge for them, and I’m sure they want to make sure that they can make a good living from their music.  Maybe that’s why they have become cautious about who says what, what gets out and what they want to stay in the past.  I wonder if I had met them on their turf, by the Kinshasa Zoo, if they would tell me the political explanations that my questions were fishing for?

In the US, people with disabilities have held disability as civil rights issue but also as a cultural framework, where we reflect on our history, create art and music, and set forth an analysis that disability is not something you overcome.  From this, I was surprised to hear Ricky’s answer to my question of advice to poor disabled people around the world – that disability is all in the head, and that people with disabilities have to be independent.  I had to scratch my head and ask myself “Is that advice too simple, that pull-yourself-up-from-your-boot-straps kind of advice?” Hmmmm!

Staff Benda Bilili said that they are looking for a US sponsor for their tour in the US.  Their manager told me it is hard to get a US sponsor as compared to Europe, where they have been touring for the last three months.  The members of Staff Benda Bilili are hoping that after the tour and the release of the documentary that they will be able to afford to buy their own house.  Noticing that Staff Benda Bilili is an all male group, my last question was if they sing with disabled women.  Coco finally spoke up, answering that yes, they do.

What happens to people who go from living on streets – poor but speaking their minds about their situation – to being managed by others who have the means to bring them wealth and fame?  What happens when the people from outside your world can take you outside of your struggle and you hold back your politics – your voice – so you can make a living?  These are the questions I have after both interviews and meeting them live. If you have any thought about this, write us back.

photo by Pamela Juhl

(Big thanks to The Copenhagen Voice, my sister, Pamela Juhl, David Grossman for pulling strings here in Copenhagen, to Florent de la Tullaye who helped me connect with Staff Benda Bilili almost two years ago – and last but certainly not least, my thanks to the members of Staff Benda Bilili for being you, for your political lyrics, and for repping people who live in poverty and who are disabled!)

In 1988, when I was twenty-six years old, I was diagnosed with ulcerative colitis, a chronic inflammation of the lower intestine. For several months after diagnosis, I became more and more seriously ill and, at one point, was rushed into hospital in the middle of the night. I remember very vividly lying in an exam room under flickering fluorescent lights. In pain, dehydrated, exhausted and very frightened, I asked the doctor if there was anything that could be done to cure the illness was playing such havoc with my body.

“Oh, there’s no cure,” she answered, not even looking up from the chart she was paging through. “You’ll have this for the rest of your life.”

It was in that moment that everything changed. Despite my diagnosis and worsening symptoms, I had considered myself “healthy” up until that moment. Now I was one of the sick, the disabled, the chronically ill.

I hated my body for this betrayal.

Though, truth be told, I had hated my body for a while.

There were many reasons for this hatred. I grew up in a family where physical abuse was a weekly, if not daily, experience. My body made me vulnerable; it was a place of pain. I grew up female in a culture where the female body attracted hatred, uninvited groping on public transit, threats and actual assault. I was queer amid fierce heterosexism, and my gender-crossing style of dress engendered anger, outrage, disdain. And, I also grew up in a culture seeped simply with fear of the “cripple,” the “flawed,” the “ugly,” and the “weak.”

In my experience of illness, I played out what I had learned.

I was filled with shame because I had become the “other.” My shame demanded that I pass as healthy. I tried (with mixed success) to hide the fact that I had an illness—from lovers, from co-workers and friends.

I punished myself because in my family (and the larger society) I had learned that punishment and abuse is what the weak deserve.

I pushed myself relentlessly even in the face of extremely debilitating symptoms. In part, this was because the experience of abuse had equipped me with wonderful tools for disassociation from my body. And, after all, “overcoming” disability and illness is what earns societal praise.

I tried to quash the terrible flaw that had arisen within me.

I wanted my body to go away.

I had always loved writing as a child, and I began writing again as an adult not long after I was diagnosed with ulcerative colitis. In retrospect, this timing was no coincidence because, gradually, writing gave a voice to the body that I had tried so hard to ignore.

When I wrote, I wrote about childhood. I wrote about illness. I wrote about my parents and my family. I wrote about being female and queer in a sexist/heterosexist society. I wrote fantasy. I wrote fiction. I wrote poetry. I wrote memoir. I wrote whatever I felt moved to write.

In doing all this, writing helped me to ingest, metabolize and shift my understanding of illness. It helped me understand the ableism of the wider society that had made me think of my body as flawed and ugly and wanting. It helped me to redirect my anger—from inward to outward. It helped me to learn to love what I had been taught to hate.

Writing demands solitude. It demands being closely and deeply with ourselves in a way that few other things require. And in doing so, it opens up the possibility of peeling away the layers of the lies we have been told so we can find our own truths. It allows us to find what is deep (and sometimes hidden) within us. And it allows us to give it voice. In doing so, it can allow us to become profoundly liberated from the things that have held us down. It also offers us a means for us to celebrate and proclaim.

By writing, we create the opportunity to share our realizations and insights and revelations with others. It creates a new reality from the old.

There is a splendid contradiction in writing: in order to do it well, we must depart the present to inhabit our imaginations. Yet, in doing this, we must also being willing to move into a much deeper place within ourselves.  For me, this place is profoundly physical. I write, ironically, from the place in my body that is the site of my illness. I write straight from my gut.

On Sunday November 15^th, 1pm – 4pm, Elaine Beale will lead a writing workshop sponsored by Sins Invalid. The workshop will include exercises, prompts and discussion that will allow participants to write about their own personal and political experiences of the body. The workshop will take place at Modern Times Bookstore in San Francisco. For more information, go to http://sinsinvalid.org/whats_new.html.  To register, please email info@sinsinvalid.org.