disability

How We Got Barb Back: The Story of My Sister’s Reawakening After 30 Years of Schizophrenia

farhana — Fri, 03 Dec 2010 00:00:00 +0000

“There is a truism in the mental health community that says that troubled families focus on the sickest member, even welcoming the sickness, to avoid dealing with other problems,” writes Margaret Hawkins on page 77. By this time, I had been fully introduced to her family and was struck by the truth of this statement.

Margy’s family story began as so many others did in the mid-twentieth century. Dad is a professional, Mom stays home with the children, three children live in a safe suburb, walk to school, argue with each other, and clamor for more freedom. From the outside, perhaps the most boundary-stretching part of their lives was the fact that the age gap between Margy and her older siblings was so large. Barb, the oldest, was eleven, and Tom was eight when she was born, so by the time Margaret was old enough to form any lasting impression of her sister, Barb was graduating from high school. It was during this time that Barb began slowly slipping into schizophrenia.

There were so many strikes against Barb at this point that it seems almost understandable that she fell through the cracks. She was leaving home to live on her own at college, her parents were suspicious of doctors, and mental illness was severely stigmatized in the 1950s and early 1960s. Somehow, Barb managed to graduate college, get married, and move to the Middle East with her husband for two years before her disability became unavoidable.

The story really gets going upon Barb’s return from Iraq when she moves back in with her parents and succumbs to the voices in her head. Her parents make very little attempt to get help for their eldest daughter, instead accommodating her need for isolation and ensuring that she never has to leave the house. This goes on until both parents are dead, nearly thirty years later.

Margy instantly springs into action, proving herself uncannily able to dig up resources to help Barb in the form of home visits from social workers and psychiatrists. She patiently but tenaciously continues to push her sister’s boundaries and is rewarded with an amazing realization that there is more of Barb inside than anyone ever realized.

This story is a testament to the power of love and persistence, patience, and compassion, and will leave you wondering if you just might be selling someone you know a little short because it makes life a little simpler.

Written by: Kari O’Driscoll, December 2nd 2010

Shirley Adams

annette — Sun, 03 Oct 2010 08:00:00 +0000

Directed by Oliver Hermanus

The Global Film Initiative

Interlacing themes of poverty and perseverance in the Cape Flats area of post-Apartheid South Africa, Oliver Hermanus explores the relationship between a mother, Shirley, and her quadriplegic son, Donovan, as he slips into depression after having been shot in his neighbourhood.

Having given up her job to care for her son, and having been abandoned by her husband, Shirley struggles to support Donovan’s mental and physical well-being and at the same time take care of herself. Due to high medical bills, she is forced to rely on the help of her neighbours and the meagre money her errant husband leaves her sporadically in the mailbox. Caught between coping after being abandoned by her husband, dealing with the police who are trying to capture the person responsible for the shooting, and consoling Donovan as he struggles to come to terms with his permanent disability, Shirley’s life is both overwhelming and erratic.

Shirley, played by well-known South African actress, Denise Newman, is strong and resilient in her efforts to support Donovan, going so far as to steal, doing whatever she believes necessary to protect her son. She is also a very proud woman, and is reluctant to accept any help, including shunning the help of a white personal support worker named Tamsin (Emily Child), interpreting her service as charity. She does, however, swallow her pride and later accepts Tamsin’s help.

Donovan (Keenan Arrison) is for the most part quiet throughout the film, though not without effect, seeming to live almost entirely in his head. Keenan does a fantastic job of portraying the deep anguish a young person feels when their life is irrevocably changed by an incident out of their control. The relationship between himself and his mother is both touching and stifling. Few words are exchanged between them but the tension in their relationship is very palpable when they’re in the same room. Anguish and pain, fear and desperation are etched in their movements, making this a very absorbing film.

Hermanus’ use of close-up camera shots, particularly on Shirley, gives this film the stifling, erratic and intimate feeling, making the audience feel what the character feels. This, I felt, was the most important element of Shirley Adams. Furthermore, the lighting chosen by Hermanus, particularly in the scenes shared by Shirley and Donovan, is sombre and dark, well chosen to contribute to the overall effect of the film. The themes of poverty, struggle and perseverance were effectively communicated throughout. Shirley and Donovan live in a poor neighbourhood in Cape Town, an area designated by the Apartheid government as being for “Coloured” people only. The conditions for the people living in the Cape Flats have not changed much since the official end of Apartheid and the daily lives of “Coloured” people in this area continue to be a struggle. Hermanus’ film is raw and socially relevant because it depicts the circumstances of the reality that many face.

Hermanus does a wonderful job highlighting the sacrifices one makes in the role of a mother, especially a single mother. Although Shirley’s life is changed completely, her sacrifice for her son and the strength she shows despite insurmountable challenges is something worth taking away from this film.

Written by: Toni Francis, October 3rd 2010

12th Annual Allied Media Conference (6/18 - 6/20/2010)

admin — Wed, 21 Jul 2010 08:00:00 +0000

Wayne State University

Detroit, Michigan

This weekend I attended my favorite conference: the Allied Media Conference (AMC) in Detroit. This year was way more subdued than the last two years I’ve attended. There were fewer people of color present; I didn’t go to very many sessions; I was on my period, feeling real low energy; and it was still amazing and transformative, and once again reminded me of what I’m here to do in this world. Even with its challenges, the AMC is the kind of conference that has me checking the calendar to make sure I’ve got it on deck for next year.

The most powerful part of the conference for me was being connected to the Creating Collective Access folks, organized in less than a month by some of the fiercest people I know. I was reminded how conferences themselves create a non-sustainable way of folks relating to each other, to themselves, and to their own needs. On some days the conference schedule was filled from 8am-2am. Being connected to the Collective Access folks allowed me to give myself permission to chill, to not push through exhaustion and inattentiveness to be at every session, and to not sacrifice a really good slow conversation to make it to a panel presentation on listening. I felt more in my body, more aware of my needs.

Creating Collective Access also had me questioning what collective space looks like and what to do when access may be so different for different people. I went to one of the sessions that was part of the Indigenous Media and Technology track, and the presenters were using smoke as a tool in the workshop. I was thinking about folks with disabilities that need scent-free spaces and how you hold those things together or, if you can’t, what do you do? Are we willing to do what it takes to create or use tools to share across real boundaries?

I was amazed by Adrienne Marie Brown’s Octavia Butler Symposium, people’s overwhelming interest as well as her awesome awesome facilitation skills. Adrienne is so fierce she had the notes up later that day! I was once again struck by folks' reluctance, and perhaps inability, to talk about trauma in our movement and how we heal or don’t from all these –isms that impact our lives.

I feel softer now, and sharper at the same time. I am refined and focused, recommitted to kindness with direction, and more prepared to speak up as an ally for the disability justice movement and the rights of indigenous peoples. I’m full and content and feel myself coming into a new era of myself. I’m hopeful and it feels really good.

Cross-posted at Crunk Feminist Collective

Written by: Moya Bailey, July 21st 2010

Forced to Care: Coercion and Caregiving in America

admin — Sat, 10 Jul 2010 08:00:00 +0000

By Evelyn Nakano Glenn

Harvard University Press

Evelyn Nakano Glenn is a professor of Women’s and Ethnic Studies at University of California, Berkeley and author of Forced to Care. Perhaps because of her vocation, the book has a bit of a textbook flavor to it, but as it progresses, she lets go and begins to fill it out with a more humanistic view.

Forced to Care begins with a look at those who are responsible for the lion’s share of caregiving in America. Glenn’s findings basically confirm what most of us know already: in most cases, women of color, women at the low end of the socioeconomic scale, and illegal immigrants are the ones caring for our nation’s young, disabled, and elderly.

The author then takes her inquiries one step further by tracing the roots of caregiving back to colonial America in an effort to discover why such a disproportionate amount of paid and unpaid caretaking falls to these individuals. Glenn does a terrific job of leading the reader through the individual events that occurred politically, socially, industrially, and economically to reinforce the notion that it is a woman’s duty to take care of needy family members. Following the shift from an agricultural, self-sustaining, family-based society to a market economy, Glenn shows just why gender divisions still remain with respect to these types of jobs. She illustrates, through the use of an amazing amount of research, just exactly how American women with very few other choices have been coerced into providing care for others to the detriment of their own needs for centuries. Our society’s continued devaluation of these kinds of “homemaking” services serves to perpetuate the problem.

It is clear that the author encourages a sea change with respect to both paid and unpaid caregiving, but she refrains from demonizing any particular groups or individuals, instead offering a clear, concise look at how we got ourselves here, and why we need to get out of this mess while we still can.

Glenn advocates for both care providers and those receiving care and uses her vast knowledge of the history and foundation of the problems to offer concrete solutions to the difficulties both face as our aging society pushes us closer to a crisis in the fastest growing segment of healthcare in America.

Before picking up this book, I was nearly certain that I would be called upon to care for elderly family members at some point in my life, although hopefully not until my children are grown and gone. Despite my fears of being able to do so with grace and love versus resentment and frustration, it was nonetheless something I didn’t see a way out of. I can’t say that Forced to Care allayed my fears in any way, but I gained a tremendous amount of insight as to how and why I might be called upon to provide such care and how, if I am so inclined, I might join in efforts to increase the availability of resources and respect for caregivers as a whole.

While the book is not an easy read—I didn't settle down with it in my lounge chair next to the pool—it is an absolutely eye-opening look at something many of us take for granted; that we as women will eventually be called upon to care for those family members who cannot do it for themselves.

Written by: Kari O’Driscoll, July 10th 2010

See What I'm Saying: The Deaf Entertainers Documentary

admin — Thu, 17 Jun 2010 16:01:00 +0000

Directed by Hilari Scarl

Worldplay

See What I'm Saying is an irreverent yet important introduction between Deaf performers and a mainstream hearing audience. The film, which is open captioned, follows a year in the lives of four performers who make up a cross-section of the Deaf community in terms of art form, race, gender, and sexuality. One performer identifies as hard of hearing rather than deaf, but wishes to be accepted as a part of Deaf culture.

Before I go on, a few definitions:

Deaf Culture: Deaf with a capital “D” means a specific reference to the largely American Sign Language (ASL) using community, and the media, theatre, comedy, music, history, and other aspects of any culture transmitted through language. Deaf with a lowercase “d” means the generic description for someone who can’t hear, whether they are a part of the Deaf community or not. The film goes a long way toward making this clearer, as well as succinctly demonstrating various different ways of communicating using speech and sign.

Open Captions: See What I'm Saying has the captions burned into the film itself, and there is no way to turn them off. Every print of the film in every cinema is captioned. The captions also include descriptions of incidental sounds and music, but are otherwise like watching a subtitled foreign film. This is a huge deal for a film on release at major cinemas. The film is also voice-interpreted where necessary, so there is a continuous signed, spoken, and captioned narrative.

Now, back to the review. The four performers featured are really engaging people. Bob Hilterman is an old school rocker who, Blues Brothers style, decides to get his former band back together for one last show. Everyone in the band is Deaf and all the guys are really funny, as is their repartee when they finally get together and start rehearsing again.

CJ Jones is a comedian with a level of success on the scale of, perhaps, Robin Williams, going by reactions of his fans when they spot him at Deaf events. His humour is a mix of storytelling, improvisation and observation, and he’s a comic actor as well. The film follows his well-deserved but not always fruitful attempts to break into mainstream comedy and television.

Robert DeMayo is an admirably centered person who can talk about his difficult past with honesty and understanding for people who’ve let him down. He’s an amazingly gifted storyteller and comic mime artist, and it’s a shame there wasn’t time to feature more of his work in the film. I could watch his stuff all day.

TL Forsberg is the youngest performer, the only woman, and also the only artist whose journey specifically relates to being accepted by the Deaf community, while the others are followed trying to achieve success with hearing audiences. This juxtaposition adds further depth to the audience’s understanding of the difficulties of "crossing over." In fact, any minority artist or from any underground art form could relate to the difficulties portrayed in See What I'm Saying.

Hilari Scarl, a hearing performer and director who worked as a voicing actor with the National Theatre of the Deaf (NTD), decided to make the film after noticing that once the tour was finished, she was getting work and her deaf colleagues just... weren’t. Scarl became passionate about this issue and used her considerable skills as a producer to make this happen. She does not come across as an outsider but, to this hearing reviewer in any case, as part of the scene. Her drive as a filmmaker was evident when I spoke to her, and she had a dedicated team of performers, promoters, volunteers and friends, as well as the financial backing of a few major corporations. It is her hope that these and other Deaf performers will receive the attention they clearly deserve.

Written by: Chella Quint, June 17th 2010

Encarnación: Illness and Body Politics in Chicana Feminist Literature

admin — Thu, 22 Apr 2010 16:01:00 +0000

By Suzanne Bost

Fordham University Press

The pockmarks on the Aztec figure on the cover of Suzanne Bost’s Encarnación: Illness and Body Politics in Chicana Feminist Literature are a reminder of the proximity of disease, illness, and pain to death. Chicana artist Maya González’ painting is in fact entitled Death Enthroned, and serves as a constant thematic backdrop to Bost’s book since it embodies many of the themes that Bost will deal with in her study of Chicana feminist literature: Aztec culture, illness, death, religion, and woman’s precarious position in the intersection of these elements.

Bost’s study is not the first to examine Chicana feminist literature, as many readers will note (many such studies have been reviewed by FR). In effect, the three authors Bost chooses to analyse are part of the established cannon of Chicana literature, with Gloria Anzaldúa being the face of said literature with twice as many critical articles written on her (over 200 in the MLA directory as of April 1, 2010). Both of the other writers, Cherríe Moraga and Ana Castillo, have also established themselves in the last twenty years or so. All three have been studied within other “literary labels,” such as Queer Studies for Cherríe Moraga and Ecocriticism for Ana Castillo, for example.

Separately, all three authors have been examined under the relatively new label of Disability Studies, but the intersection of Disability Studies with Chicana Feminist Literary Studies is a novelty, which Bost (and other academics) sees as appealing. In the contextualization of her analysis, Bost finds it fitting to differentiate studies on the Female Body (which have been done for each of the writers mentioned) with Disability. This is perhaps one of the most interesting theoretical parts of her analysis since the line separating the two is very fine: pain, illness, and disability are all part of the bodily construction and seem inseparable. Thus, Bost’s analysis is enlightening as to what exactly is new in her approach: a Chicana identity rooted in the body, but which transcends it, as her use of the Spanish term encarnación (incarnation) in the title signals both a figurative and literal embodiment. Bost specifically writes that she is interested in “the ways in which other corporeal qualities—ones that are not genetic, visible, or already politically inscribed as an assumed axis of oppression/privilege—upend the familiar forms of identity.”

Before moving to individual chapters examining each author, Bost explores the context of identity and grounds Chicana identity in the Aztec traditions. The author is very thorough in her reminder of all the Aztec symbolism throughout the four chapters and, for those of us who need a refresher, there is an abundance of useful information. What Bost terms as a hagiographic (reverential towards the religious figures) study of Aztec culture is also useful in that it establishes an unconventional (read non-Christian) relationship to pain, illness, death, and their relationship to representation in that tradition. Furthermore, in this chapter Bost chooses to iconize Frida Kahlo as one of the central contextualizing figures for the Chicana disability studies as she epitomizes both analytical elements, as well as being a significant influence on all three authors.

All three chapters on the individual authors are well written and quite detailed. However, one can but lament the fact that Bost did not take the opportunity to write a proper conclusion to her study (one that would have reiterated the more direct links between the writers and come to some consensus about the use of Disability Studies as a useful tool to examine Chicana Feminist Literature). Although I personally find her introduction of the Chicana artists Maya González and Diane Gamboa in her conclusion to be fascinating and informative, it is Chicana Feminist Literature that her study chooses to focus on, and it would have been interesting to see if Bost had found relevant links to other Chicana writers. With the prominence of the Chicana women artists and the inclusion of the twelve beautiful color plates in her book, it is almost fitting to suggest that the book be renamed Encarnación: Illness and Body Politics in Chicana Feminist Representation.

Written by: Sophie M. Lavoie, April 22nd 2010

My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities

admin — Thu, 11 Feb 2010 17:01:00 +0000

Edited by Yantra Bertelli, Jennifer Silverman, Sarah Talbot

PM Press

My Baby Rides the Short Bus is an anthology of articles written by parents about their firsthand experiences of raising children with disabilities. In addition to their common identity as parents of disabled children, the contributors also share another trait: all of them find themselves outside of the mainstream by virtue of identity or political perspective. Together the articles make up a lively collection of authentic voices that speak to the joys and challenges of being marginalized and/or subcultural parents raising special-needs children.

Many of the authors write about how their non-mainstream identities have affected their experience of raising special-needs children. Thida Cornes writes about how she learned to work within the constraints of her own disability, dystonia (a physical disability that causes muscular spasms), to take care of her son, who has been diagnosed with cerebral palsy. A lesbian minister, Maria June writes about becoming, at age twenty-three, the foster mom of a fifteen-year-old with special needs. Amber E. Taylor, a self-described “black biracial dyke with head-to-toe visible tattoos and a bald head” and an adoptive parent of a son with Down syndrome, writes about the backlash she receives from biological parents of disabled children who think she shouldn’t attend support group meetings because she “chose” to parent a special child.

The authors also write about the process of navigating the many institutions ostensibly set up to help special-needs children, but which often end up sidelining them. Several authors write about the experience of diagnosis: the behavioral testing milieu in which young children, separated from parents and subjected to unfamiliar conditions, unsurprisingly fail to show their full range of abilities, and then are slapped with labels that sometimes sound more like death sentences. Authors who spend 24/7 with their children write about the experience of not being believed by “specialists” about their children's abilities and needs, or being subtly blamed for their children’s disabilities. Expressing the frustration felt by many of the authors, Kerry Cohen writes, “Unless I hate the things that make [my son] different from other children, I will always be a wayward mother.”

But not all the stories are about frustration and tragedy—many of the authors write about the creative and energetic ways they have found to help their children thrive, often in direct opposition to the institutions that are set up to “help.” Karen Wang and Heather Newman write about “unschooling”—creating stimulating and safe learning spaces at home, tailored specifically to their children’s particular needs—while Shannon Des Roches Rosa tells how she co-founded a special education PTA that helps parents of children with disabilities advocate for their children in the local public school system.

As so many of us know from personal experience, it can be very difficult to be part of multiple marginalized communities. As one of the authors, Andrea Winninghoff, laments, “In a community of parents with deaf kids, I will always be the single, young, gay mom. Among gay parents, I will always be the one with the deaf kid that they can’t speak to.” While there are many books available on parenting special-needs children, very few of those books offer an explicitly political analysis of the rights of special-needs families and of the systems that do or don’t serve them, and very few of those books acknowledge the experiences of parents who are out of the mainstream, whether due to race, class, gender identity or sexual orientation, disability, political beliefs, or lifestyle. Frank, engaging, and broad-ranging, My Baby Rides the Short Bus is a rare and precious treasury of these too-often invisible stories.

Written by: Ri J. Turner, February 11th 2010

The Gloria Anzaldúa Reader

admin — Tue, 09 Feb 2010 17:01:00 +0000

Edited by AnaLouise Keating

Duke University Press

I should probably start by saying that I absolutely love Gloria Anzaldúa. She was a writer whose work focused mostly on her identities as a woman, Chicana, lesbian, feminist, etc.—identities she insisted could not be separated from one another. She is probably best known for co-editing This Bridge Called My Back: Writings by Radical Women of Color and for her book Borderlands/La Frontera, The New Mestiza.

Anzaldúa’s work engages me in a unique way, so I was equal parts ecstatic and apprehensive to start The Gloria Anzaldúa Reader. There are so many ways this could go—there could be too much new or obscure material, too much old material, too much academia, etc. Luckily for me, the book provides just the right balance and showcases Anzaldúa in a way that made me love her even more.

The book is divided into four sections: early writings, middle writings, images, and later writings. The divisions are based mostly on chronology, but there are also certain themes that are more prevalent in one section than another. Every section starts with a quote from Anzaldúa’s works and each piece has a short introduction. The introductions were very useful because they often provided the context of where it fit into Anzaldúa’s writing, listed some of the themes in the piece, and sometimes suggested what other works to read in order to explore the themes in that piece.

What I liked most about this book is that the editor, AnaLouise Keating, does a great job of including a bit of everything in almost every way. There are poems, fictional stories, autobiographical pieces, drawings, transcripts of talks and email exchanges, and so forth. In terms of content, there are at least a couple of pieces for all of the issues important to Anzaldúa: feminism, culture, queer studies, and disability. For example, the book contains an interview about spirituality and sexuality, a piece about her preference for the term “dyke” instead of “lesbian,” several pieces about culture and identity, a poem about the process of writing, an email exchange about disability, and the list goes on. It gives a great introduction to people who have never before read Anzaldúa’s work, but even die-hard fans will like the book because it includes a good amount of unpublished material.

I enjoyed almost everything included in this book, but I did earmark a few that stood out to me. There were a few pieces about how Anzaldúa started writing and the methods she uses for writing that I liked a lot. Similarly, a piece on creativity was one of my favorites, in which she explores the rational mind, imagination, her sensitivity to the world around her, and how all of that comes together when doing something like writing. There was also a very funny story about a woman so saddened by her husband’s death that he comes back as a ghost, at which point she realizes just how sick of him she really was.

One thing that I might have changed is the placement of the images. It was great to include them and a couple of the drawings make my list of favorite pieces in the book, but I think putting them all together in between other chapters seemed awkward. For me, it was reminiscent of a biography with photos in the middle. Perhaps spreading them throughout the chapters might have been better and more in tune with Anzaldúa’s own style of switching through mediums within the same work. But I have to admit that this is probably just nitpicking to find flaws in an otherwise incredible book.

Written by: frau sally benz, February 9th 2010

Signifying Bodies: Disability in Contemporary Life Writing

admin — Tue, 02 Feb 2010 17:01:00 +0000

By G. Thomas Couser

University of Michigan Press

We live in an age in which the memoir has become the preeminent genre. Writers of the contemporary memoir are not required to be a “somebody” or famous personality before publication. This is the age of the “nobody” memoir—the writings of individuals who tell stories of lives that in previous ages would have remained untold. In his thought-provoking book, Signifying Bodies: Disability in Contemporary Life Writing, author and professor of English at Hofstra University, G. Thomas Couser, argues that with these modern memoirs we have seen an astonishing proliferation of personal narratives about disability—from personal stories about illnesses like HIV/AIDS, or breast cancer, to accounts of mental illness, narratives by people living with physical disabilities such as blindness or mobility impairments, and accounts of addiction.

These “some body” writings, as Couser somewhat ironically terms them, have arisen in the wake of the civil rights movements of the last several decades. They not only provide a previously unknown level of visibility to people with non-normative bodies in our society, but they also provide a means for self-representation in which “disabled people counter their historical objectification (or even abjection) by occupying the subject position.” At the same time, Couser observes, these writings are largely mediated by publishers, the marketplace, and our collective preconceived notions of what constitutes acceptable narratives of disability. As such, they may play into stereotypes and reinforce our culture’s ableism. Thus, one extremely common pattern of the disability memoir is that of an individual who triumphs over adversity (think the amputee mountain climber, or the blind runner). In these stories, disability is a “problem” that must be “overcome” by a single, exceptional individual. These books contain no collective action, no political awareness of how our society is structured to marginalize people with disabilities, and no questioning of the status quo.

In a later chapter, Couser contrasts this kind of narrative to the work of memoirists like Anne Finger whose Elegy for a Disease goes beyond an individual account of her disability to include interviews with other survivors of polio and quotes from other memoirists. Says Finger, “I do not want to give you just my story…I also want to write about the social experience of disability.” Couser identifies Finger’s book as belonging to a set of new post-ADA disability memoirs in which authors consciously attempt to avoid the clichés of triumph over adversity, or providing a voyeuristic experience of “the other.” He also notes that these new memoirs come from a privileged group within the disability community itself—white professionals whose access to resources such as education has provided them with the means to understand and tell their stories within a larger social context.

In another chapter, Couser provides thought provoking discussions of documentary filmmaking about people with disabilities, discussing one film in particular—Face To Face: The Schappell Twins—as an example of an exceptional documentary that avoids freak show exploitation while pushing the audience to question notions of normality, individuality and privacy by taking them into the world of Reba and Lori Schappell, conjoined twins. He also examines Marjorie Wallace’s extraordinary biography of June and Jennifer Gibbons, The Silent Twins, who were elective mutes convicted of arson and confined indefinitely to Britain’s Broadmoor Hospital in the 1980s. Another chapter makes an argument that people with disabilities warrant the attention of ethnography, and engages in a thoughtful examination of the memoir, Riding the Bus with My Sister by Rachel Simon in which the author wrote about her sister Beth who has mild retardation.

Published by a university press, Couser’s book assumes a certain familiarity with the language of the academy. Yet it remains accessible and engaging, providing an intelligent examination of contemporary life writing within a framework that pushes readers to question basic assumptions about disability embedded in popular culture. Signifying Bodies offers a much needed contribution to discussion of the modern memoir by highlighting the contribution and representation of people with disabilities to the genre.

Written by: Elaine Beale, February 2nd 2010

Wherever There's a Fight: How Runaway Slaves, Suffragists, Immigrants, Strikers and Poets Shaped Civil Liberties in California

admin — Wed, 13 Jan 2010 09:00:00 +0000

By Elaine Elinson, Stan Yogi

Heyday Books

On June 16th, 2008 Phyllis Lyon and Del Martin made headlines as the first same-sex couple legally married in the state of California. The couple, who first met in the ‘50s, spent the majority of their adult lives advocating for equal rights for homosexual couples and lived to see their goal realized. Although Californians have fought the battle for same-sex marriage most visibly in the past ten years, activists such as Lyon and Martin have been addressing the issue of discrimination against homosexuals in California for several decades. Lyon and Martin’s story is just one of the many civil rights struggles highlighted in Wherever There’s a Fight, an anthology of activism in the Golden State.

Each story carries with it a delightful tinge of tension, and as I read I found myself anxiously awaiting to hear how ordinary citizens had confronted their various struggles. Elinson and Yogi, both writers with close professional ties to the California ACLU, document civil liberties struggles from abortion rights to workers rights to the right to dissent. The stories demonstrate how many Californians became lifelong activists after fighting for rights that so vitally affected their access to life, liberty and the pursuit of happiness.

Ed Roberts was such a person. Roberts was infected with polio as a boy, leaving him paralyzed from the neck down. After his mother lobbied the local school board to allow her son to graduate high school (the principal had denied Roberts a diploma because he was unable to complete the district’s physical education and drivers education requirements) Roberts decided he would attend college to secure a meaningful livelihood. In 1962 he became the first severely disabled student admitted to the University of California at Berkeley, although the administration was unaware when they admitted him that the straight-A student was disabled. Thus began a fight for equal access and protection that Roberts would fight for the rest of his life that made California into the birthplace of the disability rights movement in the United States.

As the fight for civil rights becomes more visible, and more progress is gained, perhaps a second edition of this wonderful book will include some exciting new stories. I can’t wait!

Written by: Janice Formichella, January 13th 2010

Exile and Pride: Disability, Queerness and Liberation

admin — Mon, 11 Jan 2010 17:03:00 +0000

By Eli Clare

South End Press

The best resistance literature describes a specific moment in history and is written within the context of an organized movement. As the disability movement gains more exposure and support, Eli Clare’s Exile and Pride will join the list of classics among resistance literature. Clare’s bold yet gentle narration of his experience as a disabled American gives readers an inside look at the consciousness of the movement.

Exile and Pride seeks to discover and explore how the disabled community can create pride, what words or symbols demonstrate this pride, and which collective or personal histories should be celebrated rather than simply witnessed. As a transgender individual with cerebral palsy, the activist also explores the various ways his body has been stolen and abused, and how such abuses can be avoided in the future by a revolution in the way mainstream society views and treats disabled individuals.

My favorite part of the book is the chapter titled “Freaks and Queers,” in which Clare provides readers with a history of the American “freak shows” that toured the country through the beginning of the twentieth century. Clare explores the lives of those who were exploited and who made a living off being known as a “freak.” Clare speaks about, and sometimes to, such people with a touching, yet bold, sensitivity that he has come to be known for. He also introduces his audience to a time and place that few who do not read Exile and Pride will ever ponder.

Clare uses the exploration of the freak show as a backdrop for exploring the larger issue of language, labels, and the process of “reclaiming” that so many oppressed communities undertake. The disabled community is of course no different. While embracing the terms cripple and queer, Clare pushes back on the use of the word freak and uses his unique brand of storytelling and personal narrative to explain the reasons why. It is Clare’s contention that freak not only implies self-hatred, but also reinforces historical lies and abuse of the disabled, such as those perpetrated by the freak shows.

I think one of the defining characteristics of resistance art is that it effectively raises the awareness of those in the mainstream. From the history of the freak show to Clare’s personal experiences and lyrical narratives, the book does just that.

For instance, although I have never watched it, I also never realized the annual Jerry Lewis marathon was a source of such anger and irritation for so many disabled individuals. I am also thankful to know about the “medical model of disability,” one that paints disabled people as being sick, and waiting for a cure, one that forces many to obtain non-medical, adaptive equipment from a doctor instead of a website. It is awareness of such issues that will bring the cure to ableism that Clare and millions of other disabled individuals and allies seek.

As a severely disabled individual who also has advanced degrees and has authored two books, Clare may be seen as “transcending” his disability. However Clare adamantly rejects such notions and instead envisions a world where people such as him as seen as full participants in mainstream society. Such a vision requires inclusion, not celebration, of those with “special needs” who live full lives. Clare turns his nose up at the insistence of mainstream culture to find “supercrips” who have “overcome” their disabilities.

Of particular interest to Feminist Review readers is Clare’s analysis of the line between being “a sexual object and a sexual subject” in the chapter “Reading Across the Grain.” I have never read such a poignant analysis of the subject that so few, even in feminist academia, fail to recognize. Clare gracefully describes how the media and the pornography industry have led women to believe that being objectified is a manifestation of their own sexuality. The confusion between self as object and self as subject has created a culture where violence and degradation are accepted forms of sexual expression. Unfortunately, as Clare points out, feminist debate over the topic of pornography and sexual expression remains polarized.

As an individual with disabled family members, I read Exile and Pride in a quest typical of those in the mainstream that Clare expresses frustration over. I read the book in an attempt to come to some understanding of the world in which those different from me live in. What I was reminded of and what I now seek to make a part of my own deeply ingrained consciousness is that those different from me don’t live in a different world. We all live together in the same world, but with vastly different realities. As feminists our role is to remember and expose these realities.

Written by: Janice Formichella, January 11th 2010

Los Abrazos Rotos (Broken Embraces)

admin — Thu, 03 Dec 2009 10:48:00 +0000

Directed by Pedro Almodóvar

Sony Classics

The latest Pedro Almodóvar film is very much what we expect, but it’s also what we don’t expect. One of the many things I love about Almodóvar is that he has normalized some of the most marginalized and oppressed people in our society in his films (i.e., Transgender Latinas, mentally ill communities, and queer communities). I also love that he creates relationships with all the people in his cast and allows them to demonstrate their acting range as he cast them in other projects in completely different roles. I will let you know that Almodóvar is one of my favorite screenwriters and directors (Takashi Miike and Karyn Kusama are also on that list).

As a result, Almodóvar’s “usual suspects” are cast in Los Abrazos Rotos: Penélope Cruz (Volver) as Lena, a sex worker turned secretary who seeks to become an actor; Lluís Homar (La Mala Educación/Bad Education) as Mateo Blanco/Harry Caine, a screenwriter and director; Blanca Portillo (Volver) as Judit García, the agent of screenwriter Mateo/Harry; José Luis Gómez (Goya’s Ghosts) as Ernesto Martel, a wealthy Spanish man who produces Mateo’s latest film; Rubén Ochendiano (Che: Part 2) as Ray X, Ernesto’s gay son whom he ignores; and Tomar Novas (Goya’s Ghosts) as Diego, Judit’s son who helps Mateo/Harry.

The film takes place in two parts: 1994 and 2008. We meet Harry Caine, a well-known Spanish screenwriter and director who is blind in 2008. His agent Judit and her son Diego have been friends for decades and ensure Harry lives the independent life he desires. One day Harry has a visitor, Ray X, who seeks to write a screenplay with him about a son who was ignored by his wealthy father because he was gay and upon his father’s death the son can finally find the healing he seeks. Ray X pitches his story to Harry, but Harry declines. Harry is suspicious that Ray X is the son of recently deceased Ernesto Martel. As Diego inquires about the resistance to work with Ray X, Harry reveals how he knew Ernesto Martel.

We are taken back to 1994 when Harry went by his birth name of Mateo Blanco. We are introduced to Ernesto Martel who is working in his office and his secretary is Lena. Her father is dying of cancer, and Lena’s family needs help. She asks her wealthy employer Ernesto for assistance and he agrees. Ernesto covers her father’s medical bills by sending him to a private doctor and facility for treatment. Upon this assistance, Lena partners with Ernesto. It is through Lena that Ernesto is reunited with his son Ernesto Jr. (Ray X) who has told his father he is gay which increased the distance between them. After two years together, Lena decides to pursue her original goal of becoming an actor. She takes Ernesto Jr., an aspiring filmmaker, with her to an audition for Mateo’s current film. Mateo is immediately struck by Lena and after two auditions hires her for the lead.

Ernesto Sr. is not encouraging or supportive of Lena’s decision to “work” outside the home. He is obsessed with Lena and seeks to keep her followed/watched at all time. In order to do this he produces Mateo’s film, and asks his son to film production of the movie for a documentary and show him the footage each day. Ernesto Sr. discovers that Mateo and Lena begin a love affair and he is not happy. Ernesto Sr. does not allow Lena to leave him and becomes abusive and violent towards her.

Throughout the film we discover how the intimacy between Lena and Mateo lead to their current status (i.e., Mateo taking his pseudonym Harry and losing his sight). It is in this space that Almodóvar gives us some of the most stunning cinematography of his native Spain: black sand beaches, Spanish architecture, and massive forms of art that are sprinkled all over the country. We witness Judit’s relationship with Mateo and how it morphs after his relationship with Lena, and how Judit’s son, Diego, sees the ocean for the first time. I loved that story line, seeing the ocean for the first time, because as someone who was not raised near water, I remember what it was like to come into contact with water for the first time.

I truly appreciated Almodóvar’s way of normalizing sexuality among people with disabilities. The first scene of the film is of Harry flirting with and having sex with a young woman. Almodóvar also demonstrates how people with disabilities can live an independent life as Harry lives alone, travels alone, and uses technology to continue his field of work as a writer. For many people, seeing a computer that speaks to a blind person (in Spanish) may be a very new visual, as this is a daily practice for some blind people that I have not ever witnessed being included in media.

Prior to seeing this film I chose to visit the film website. I read a few of the reviews of the film, which honestly rarely give me what I really want to know about a film. You see, I’d call this a film that is lacking female leads that are not pitiful. I’m not speaking of the performances, as I believe Cruz is amazing in Spanish cinema (and not in that wannabe Spanish cinema way, a la Woody Allen nonsense). Instead, all of the female characters are created in a very weak way as many of them get beaten, abused (emotionally, physically, psychologically), are purchased, scared, must get saved by male characters, or in some way represent stereotypical characteristics we see all too often. Compare these female characters to the all-female cast in Volver and it’s a totally different set of characteristics.

I find it interesting film critics call this "film noir." Is that the nice way of saying international films create similar images of women that we have here in the US? Or maybe that’s the new way to eroticize non-US cinema? Because nobody is calling Seven Pounds, Obsessed, or Sin Nombre “film noir” and the female leads are just as stereotypical, if not more.

Along the lines of the “usual suspects” and stunning cinematography, Almodóvar also keeps with the imagery we are familiar with: bright colors, costumes that make me wish I knew how to sew better, interesting artwork from all over the world, hilarious lines delivered by each character, a strong conclusion to end the film, and an amazing soundtrack. This film, with its obvious flaws that surprised and saddened me, was worth every bit of the money I dished out for my Junior Mints. If it’s not in your area yet, it’s coming soon.

Cross-posted from VivirLatino

Written by: Bianca Laureano, December 3rd 2009

Sins Invalid (10/04/2009)

admin — Tue, 27 Oct 2009 09:21:00 +0000

Brava Theater

San Francisco, California

As a dancer, I feel most alive when I'm present in my body; when I breathe hard, feel the power of my feet on the ground, and sense the weight in my head and arms. To feel embodied is an exhilarating experience, and after seeing Sins Invalid's fourth annual performance, "An Unashamed Claim to Beauty in the Face of Invisibility," I was struck by the complexities of being present and proud in a body that can make others feel deeply uncomfortable.

The show opens on Matt Fraser, a disabled performer, dancing naked, unashamedly, and beautifully as an audio recording berates him. Instead of music that reflects the grace and power of Frasier's movement, the audience (and Frasier) is bombarded with voices that echo the internal reactions many have to seeing a body different from what they perceive as normal. As I watched Frasier throw himself across the stage, it became clear that for him to feel embodied takes more strength and courage than most people are asked to summon in a lifetime.

Sins Invalid is a performance project that celebrates artist with disabilities, centralizing those who are queer and gender-variant. The project itself was conceived of, and is run by, disabled artists of color whose mission is to redefine beauty, sexiness, and normality to include people of all marginalized communities. From the cheers, whoops, and applause I heard during the show, it was clear the audience was overwhelmingly supportive of and inspired by Sins Invalid's mission. When confronted with the bodies of the performers, the audience became audibly excited rather than uncomfortable. They embraced the idea that resonates throughout the show: every body is beautiful.

I braced myself as the narrator announced we were about to witness a piece that contained S&M. I wasn't sure if, in addition to wrapping my head around the difficulties that disabled men and women face, I could watch human beings inflict pain onto one another only twenty feet in front of me. As it turns out, the humor and wit that Ralph Dickinson, Leroy Franklin Moore Jr., and Seeley Quest brought to the stage was a delightful celebration of sexuality and seduction. Watching the dominatrix role-play with her client validated the disabled client's sexuality in a refreshing and empowering way.

As the show progressed, I kept thinking to myself, "any discomfort the audience feels is not even a fraction of the discomfort that some of the individuals on stage or those they represent feel daily." While it was wonderful to see an audience seeking out and finding empowerment in Sins Invalid's show, I believe it is equally important for those who wouldn't seek it out to experience it as well. I can imagine a different audience—perhaps less open to or familiar with the ideas brought up during the performance—that might have felt troubled by certain moments of the evening. To face the pain and suffering of others takes will power.

Sins Invalid speaks to those who are rendered invisible, as well as to those who render others invisible; we're all on both sides of the equation at some point in our lives. To watch the beauty and struggle of embodiment is an important experience for both the body and mind.

Written by: Rachel Costello, October 27th 2009

Mean Little Deaf Queer: A Memoir

admin — Mon, 31 Aug 2009 16:42:00 +0000

By Terry Galloway

Beacon Press

If I had to choose only one genre of book to read for the rest of my life, I would choose memoirs. When I think of the books that have most changed my outlook on life and expanded my understandings of the world, I would think of classic and contemporary works like Black Boy by Richard Wright, Living My Life by Emma Goldman, and Naked by David Sedaris. Terry Galloway’s Mean Little Deaf Queer was such an enjoyable and enlightening read I found difficult to put down.

Galloway reflects on her life and the two of the defining characteristics of her identity that she has struggled with: growing up queer and losing most of her hearing at the age of twelve. Her mother was given a drug during pregnancy that was later revealed to cause neurological damage in fetuses, including loss of hearing.

Describing her childhood, which begins in Western Germany where her family lived while her father worked as a spy for the CIA, Galloway remembers when she was “normal,” like everybody else. But she slowly slipped into a different reality without her family even realizing it. Galloway goes to great lengths to hide her hearing loss from everyone around her, until it is discovered by a teacher at school one day. She describes her feelings of frustration and anger, and how she managed to become an accomplished figure in the world of theater acting, in spite of the many people who tried to stand in her way (including a high school advisor who told her factory work is a good choice for the deaf).

At times hilarious and others heartbreaking, Mean Little Deaf Queer manages to educate the reader about what it feels like to grow up always feeling like an outsider. In the tradition of writers like Sedaris, Galloway manages to find humor and absurdity in even the saddest moments. Whether faking her own drowning at a summer camp for disabled children,or taking an acting job in the role of an “alternative Santa Claus” at an “alternative mall,” Galloway’s stories are intriguing. If anything, I wish the book had been longer.

Written by: Liz Simmons, August 31st 2009

Call Me Ahab

admin — Thu, 16 Jul 2009 09:05:00 +0000

By Anne Finger

University of Nebraska Press

Anne Finger’s award-winning Call Me Ahab showcases a plethora of historical and literary characters—each of whom is in some way disabled—and imagines new scenarios for their lives. It’s an exciting concept and while several of the stories in the nine-story collection left me cold, Finger is to be lauded for her originality.

Her talent is particularly vivid in "Vincent." Here, Finger brings Vincent Van Gogh into the late twentieth century. Instead of brother Theo endlessly supporting his deranged, if talented, sibling, he cuts him off, leaving Vincent to fend for himself on the teeming streets of New York City. Vincent’s heartbreaking existence is juxtaposed with that of a young, male bureaucrat employed by the Social Security Administration. The pairing is better than a social science text on service delivery, poignantly demonstrating the system’s betrayal of them both.

"Gloucester" re-imagines King Lear, but this time through the contemporary eyes of Gloucester Barrows, a middle-aged man dying of AIDS. Although Barrows is from a prominent political family—think the Kennedy or Bush clans—his marriage dissolved when his wife-of-convenience divorced him following his diagnosis. Now blind, Gloucester is eager to settle his affairs and has no choice but to rely on his two sons. Dexter, the elder, is pursuing elected office and has little time for his ailing dad; Charlie, just twenty, is a hippie’s hippie who has renounced material privilege to live in horrifying squalor. Gloucester’s navigation of this rocky terrain is pitch perfect and emotionally riveting.

"The Blind Marksman" takes readers into a mock socialist dystopia under the rule of “the Great Pilot of Our People, the Beacon of Hope to the Proletarians of the World, the Heroic Leader of the Struggle Against the Fascist Invader,” and introduces a blind marksman whose one-time feat with a bow-and-arrow is embellished with each telling. Like the children’s game of “telephone,” the story becomes more and more absurd, until in the end regime change renders the marksman a caricature of his former self.

The story implies that socialism is no better at protecting individuals than capitalism. But is this true? Call Me Ahab, winner of the Prairie Schooner Book Prize in Fiction, is full of questions and what-ifs. For example, what if Moby Dick was told from Ahab’s perspective? What might Helen Keller and Frida Kahlo have discussed if they’d met? Finger’s "Helen and Frida" presents a bawdy conversation between the two that will leave you reeling, grinning, or both. Other stories feature those whose perspectives are not typically considered—the dwarf in painter Velasquez’ Las Meninas; a Jewish artist commissioned to draw disfigured internees for Hitler’s medics; and feeble-minded Ned Lud, the man behind the anti-machine Luddite Rebellion, among them.

Throughout, there’s attention to the Holocaust, anti-Semitism, sexism, racism, and discrimination against people with disabilities. While message is never sacrificed to craft, Finger wants readers to appreciate the contributions made by those with physical and psychological limitations. “Who is our greatest poet after Mr. Shakespeare?” she asks. “Why blind John Milton. And in my own century of origin, Monsieur Proust was by his asthma-laden lungs impaired in a major life function… I could mention fit-shaken Van Gogh, dwarf Toulouse-Lautrec, and mad Miss Woolf…Look to the signing of the Declaration of Independence. What see you? A one-legged man, and another who adds a palsied scrawl. Who raised the nation up from the depths of the Depression? Why a man with a pair of legs like cooked spaghetti.”

World affairs and letters have clearly benefited from the talents of the disabled. But Call Me Ahab is no diatribe. Instead, it is a cheering section for the forgotten and under-appreciated and a testament to creativity, whimsy, and intellect.

Written by: Eleanor J. Bader, July 16th 2009