Tuesday, February 28, 2006
Writer Octavia Butler died last week, after taking a fall near her Seattle home. She was 58, and had in recent years experienced limited mobility. (She also identified as dyslexic.) Thoughtful science fiction writers have, in recent years, been willing to explore the meanings of disability, and Butler was no exception. The first line of her first novel, Kindred (1979) reads, "I lost an arm on my last trip home. My left arm." Lauren Olamina, the main character in her best-known books, Parable of the Sower and Parable of the Talents, has "hyperempathy syndrome"--sometimes this condition operates as a burden, and sometimes as a gift, but always as a lived, visceral experience. In the short story collection Bloodchild, at least two of the stories are worth a look for their disability themes: "Speech Sounds," which won the Hugo Award for best story, is about an epidemic virus that destroys various verbal abilities--so some people can no longer read, others can no longer speak, etc.--and about the social adaptations and maladaptations that might follow such a change. "The Evening and the Morning and the Night" is about genetics and personal responsibility, about getting and living with a hard, hopeless diagnosis. They're thought-provoking portrayals that might work very well for classroom discussion. And now the Butler oeuvre is closed, much, much too soon.
A few other bloggers on Butler's sudden passing: Acephalous, Oscar Chamberlain at Cliopatria, Edward Champion, Pam Spaulding, Mark Lamont Hill, Tim Burke at Easily Distracted, Tyler Cowen at Slate. I'm sure there are others.
Update 3/10: Josh in Comments points us to Matthew Cheney's good list of links to other remembrances here.
Some print resources for further reading:
Marilyn Mehaffy and AnaLouise Keating, "'Radio Imagination': Octavia Butler on the Poetics of Narrative Embodiment," MELUS 26(1)(Spring 2001): 45-76.
P. G. Stillman, "Dystopian Critiques, Utopian Possibilities, and Human Purposes in Octavia Butler's Parables," Utopian Studies 14(1)(2003): 15-35.
N. Jesser, "Blood, Genes, and Gender in Octavia Butler's Kindred and Dawn," Extrapolation 43(1)(2002): 36-61.
Monday, February 27, 2006
I disclosed to the young, rather yuppy looking audience at the Disability Caucus that I had been a young Democrat in the early seventies and although the clothing style has changed, I hoped that the passion for issues remained or even increased. I did, however, admit that when I was a young Demi, there wasn't even the mention of disability issues, even by me. At that time, I just wanted to blend into the generic scene. I have since grown up and so have many men and women with impairments who realize how critical it is, regardless of party affiliation, to be politically in touch, vigilant and empowered.
As one of three women on the panel, I spoke to concerns that, whether we were young or old Democrats, we need to be more connected to, and informed by, the disability community. Likewise, I held people with impairments, including myself, accountable for making issues known and demonstrating connections where our issues intersect with other political minority identity groups, as well as the general public.
I don't think we, people with disabilities, are passionate about the political urgency there exists, or about the clout we can have, in achieving some basic life rights. People with disabilities cannot be merely courted during elections and on the same hand, we cannot merely think that we have performed our duty by showing up and pulling levers at the voting booth. We must become extremely informed about the political system as well as about the disability statisics that we use in presenting issues. It is fine (to a point) to share personal stories, but we must also become scholars of the information that is needed when there are opportunities for education and convincing legislators of the importance of issues and how their decisions impact not only our welfare but the common good of the comunities throughout the country.
People with disabilities, as well as allies, must not be strangers to political opportunities. In fact, we must work towards becoming leaders in the larger political domain.
Carol Marfisi, M.A
Saturday, February 25, 2006
On the same day, in New York City... "The Secret History of Forced Sterilization" will be the program at Makor, 35 West 67th Street. The speaker is journalist Harry Bruinius, author of Better for All the World: The Secret History of Forced Sterilization and America's Quest for Racial Purity (Knopf 2006). This is a lunchtime program, noon-1pm. (The New York Times review of this book is discussed here.)
Friday, February 24, 2006
Christian Watt (1833-1923) was a Scottish fisherman's daughter, fisherman's sister, fisherman's wife, and fisherman's mother--and went to sea herself as needed. She had ten children too. Her hard life got harder during the 1870s, when a succession of untimely deaths (her husband and four of her children) left her feeling bereft. She was admitted to the lunatic asylum in Aberdeen in 1877, and was permanently an inmate by 1879--so she lived nearly fifty years in the asylum. Christian Watt wrote a memoir while a patient--with a pencil, because ink was considered a safety hazard. Watt's memoir was edited and published in 1983, and remains a unique source for Scottish women's history--has it been read as a source in disability history yet? (I haven't seen it myself, but I'm very curious.)
Grace Eyre Woodhead (1864-1936) was a generation younger than Christian Watt, and born at the other end of Great Britain, in Brighton. Woodhead's scheme to bring hospitalized London children to a seashore retreat on holidays became a private charity serving institutionalized people with mental and physical disabilities. As a response to the 1913 Mental Deficiency Act, the Brighton Guardianship Society under Woodhead's direction provided respite care for families, placed institutionalized individuals in family care settings, ran an outpatient clinic and some basic agricultural job training and placement services for its clients, and otherwise encouraged inclusive community life, in the social climate that much preferred segregation models. The society was renamed the Grace Eyre Foundation in 1988, and continues to promote an array of community-based services.
Monday, February 20, 2006
For my Temple University colleagues, I invite you to read the very engaging and timely article that appeared in this week's Faculty Herald in honor of Black History Month.
Joshua Lukin, "Black Disability Studies," Temple University Faculty Herald, 36
(4):6 - 10.
I am in communication with the author, a lecturer in the Department of English here at Temple University, in the hopes of securing an electronic copy that I might be able to share with you. Otherwise, make sure to skim through your Faculty Herald, past the longwinded reprinting of testimony offered by Temple University faculty before the General Assembly's House Select Committee on Student Academic Freedom (January 9 & 10, 2006) for Josh's juicy insights [center fold, no less!] And I offer to send photocopies to the first 20 readers who contact me with a snailmail address.
Josh Lukin was inspired to write the article after attending a panel session at the recent 121st Modern Language Association Annual Convention, Washington DC., December 29, 2005. The panel on "Black Disability Issues" was arranged by the MLA Committee on Disability Issues in the Profession. The panel included Anna Mollow from the University of California--Berkeley, Eden Osucha from Duke University, and Jennifer James from George Washington University in DC. Robert McRuer from George Washington University served as the moderator. Although much of the article is based on papers and commentary at the panel session, to retrieve a firmer basis for Black Disability Studies, Joshua makes extensive use of oral history interviews that have recently been published through the University of California at Berkeley.
The first of the interviews that Josh quotes is with Bay Area disability activist and leader Ms. Johnnie Lacy. Born in Huttig, Arkansas in 1937, Johnnie moved with her family to California in 1947. While an undergraduate student in the nursing program at Chico State University she contracted polio. Transferring to San Francisco State University, Ms. Lacy discovered how difficult it was going to be for her to pursue her dream of becoming a speech therapist. The Education faculty closed ranks against her, insisting that the area schools would not be able to accommodate her. To add insult to injury, she was prevented from participating in her class graduation in 1960. Ms. Lacy continued to live and work in Berkeley during the 1960s and able to observe the origins of the Independent Living Movement. The oral history interview with Ms. Lacy is now archived at at the UC Berkeley's Bancroft Library and available in the Digital Collection entitled 'The Disability Rights Movement and the Independent Living Movement' .
In the oral history transcript and video, Ms. Johnny Lacy speaks about the differences between the way that African-American community as a whole have tended to view 'disability' and its connection to 'race,' and the ways that African-Americans with disabilities viewed these connections. Johnnie Lacy is now the executive director of Community Resources for Independent Living in Hayward, California.
References: Johnnie Lacy, "Director, Community Resources for Independent Living: An African-American Woman's Perspective on the Independent Living Movement in the Bay Area, 1960s-1980s," an oral history conducted in 1998 by David Landes, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2000. Available from the Online Archive of California. For a contrasting perspective on the MLA panel, see Malcolm A. Kline, "Disabled by Definition," campusreportonline.net, Accuracy in Academia's online news service, January 17, 2006.
Additional Resources on the 'Academic Bill of Rights': If you are really interested in learning more about Horowitz's efforts here in Pennsylvania, the Temple Association of University Professors (TAUP) offers a useful collection of resources on their website. A more entertaining, albeit polemical, place to start is Michael Berube's blog, where he has been engaging in a multimedia assault on with David Horowitz's anti-intellectual agenda and blog. As Penny has noted in her posts, Prof. Berube is a tenured cultural studies critic at The Pennsylvania State University and an excellent Disability Studies scholar to boot. One wonders, however, why his opinions on conservative efforts to force states to protect/limit academic freedom (depending on your perspective) generate so much more blog-buzz than his equally heated rants about the difference that would not be spoken out loud - "disability" - in Hurricane Katrina coverage. Perhaps Joshua Lukin's Faculty Herald article will help to generate some much-needed attention to the double marginalization of disabled Black Americans. Watch this space for the developments!
Update 4/19/06: We have posted Josh Lukin's original article our the main Disability Studies Program website. Enjoy!
The weather may be cold but the excitement is heating up at Temple. The Institute on Disabilities' Graduate Certificate Program is once again offering our course DS 400: Disability Rights and Culture. This time is course is being held at the Temple University Center City campus (TUCC). The new environment is very stimulating as we have the opportunity to network and converse with new students and faculty, including non-traditional students. We use this Center City platform to inform folks about a broad range of disability issues, and how they may relate to their discipline, careers and lives in general.
The students are simply awesome, but I know I say that every semester. This semester, in particular, we have a class with a lot of synergy and personality. The students from various backgrounds and disciplines provide the co-instructors with robust perspectives and questions. It is certainly a high energy class where the students do not have to be prodded to offer their opinions and experiences.
We are using My Body Politic (University of Michigan Press, 2006) by Simi Linton, a widely recognized New York disability activist and scholar, as one of our core texts this semester. It was so gratifying to hear the students discuss their experience reading her work, so engrossed that they literally couldn't put it down. Simi offers a kaleidoscopic overview of the experiences and friends who shaped her life since experiencing impairments at the age of 23. She writes in poignant, colorful details about how gradually became aware of the social and political, as well as personal, challenges faced by people who are marginalized in society for reasons tied to 'disability.'
The Institute on Disabilities will be hosting Simi Linton as the next event in our Mini Course Series in Disabilities. Simi will be presenting on the topic "Reframing Disability Through the Arts" from 9:30 am to noon on Wednesday, March 14 at the Student Center on the Temple University Main Campus. Free of charge; advance reservation requested. We would like to thank the Center for the Humanities at Temple and the School of Communications and Theater for their generous sponsorship.
Dr. Linton will be offering a personal introduction to the field, reading from her book and screening several key recent works of disability culture: Temple MFA student Shelley Barry's "Whole: A Trinity of Being," [a favorite at disability film festivals last year]; the most recent video by Sharon Snyder and David Mitchell "Self-Preservation: The Art of Riva Lehrer"; and documentation from the performances of dancer Homer Avila. For more information on these works, see the 'Artist Biographies' listing below.
Simi Linton and her publisher have organized additional events in conjunction with her visit. At 12:00 noon Tuesday, March 14, Simi will offering a book reading and book signing at the Free Library of Philadelphia. Click here to download a flier in PDF for this event, and here for a 30% off coupon to be used when ordering the book through the University of Michigan Press website.
As a person with a disability, as well as an instructor for DS 400: Disability Rights and Culture, it is inspiring to follow these developments on campus, and to offer my insights into the ever-evolving discourse of the field. These recent events only serve to reinforce how all facets of one's professional and personal life can be enlightened by the various theories and historical experiences represented in this young academic field.
- Homer Avila, "Between a Rock and a Hard Place," The Village Voice, April 25 - May 1, 2001.
- Shelley Barry, brief bio on the Temple University Film and Media Arts website.
- Riva Lehrer, personal website, featuring her portraits, www.rivalehrer.com.
Sponsors of 'Reframing Disability Through the Arts' Mini Course:
- Center for the Humanities at Temple (CHAT)
- Institute on Disabilities, Temple University
- School of Communications and Theater (SCT) Temple University
Local Arts Organizations Supporting Simi Linton's Visit:
- Art-Reach, Joining the Arts and Special Audiences
- Creative Access (CA)
- Liberty Resources, The Philadelphia Center for Independent Living
- Mayor's Commission on People with Disabilities (MDCP) Philadelphia
- VSA arts of PA / Amaryllis Theatre Company
Directions to Event Locations:
Sunday, February 19, 2006
Friday, February 17, 2006
But if you're in the New York area (see, we're serious about the "coast-to-coast" description of this blog), you should certainly try to attend the next meeting of Columbia's University Seminar on Disability Studies, on March 6, when Adrienne Asch speaks on the topic "Disability and Bioethics: Moving Beyond Current Controversies."
Wednesday, February 15, 2006
Tuesday, February 14, 2006
The editors of Morning Edition put Ben Mattlin's essay immediately after a story titled "New Jersey High Court to Weigh Gay Marriage Case." That makes sense, because the bigger point is that many marriages and families don't fit the Ozzie-and-Harriet mold--but that reality still isn't quite reflected in law, policy, or everyday interactions. As Mattlin points out, there are federal disability benefits programs that punish or disqualify recipients who go and do something perfectly ordinary like getting married. And as Stella found, there are still doctors surprised to find a young woman doing something perfectly ordinary, like using contraception.
In happier hearts-and-flowers mode, the Ouch! blog has posted the winner of its myth-busting Kissability photo contest--a mind-your-own-business discreet embrace and smooch between Joanne Evans of Glasgow and her sailing mate, Phil. Congratulations to all the happy contestants.
Monday, February 13, 2006
Disabled people, trans people, fat people, and people of color all know what it's like to be stared at. Through words and images, Eli Clare will explore the internal experiences of living in marked bodies and the external meanings of oppression and bodily difference.
When: Thursday, February 23, 7:30 p.m.
Where: UMass, Amherst, The Campus Center, Room 101
Eli Clare is the author of Exile and Pride: Disability, Queerness, and Liberation (South End Press 1999).
Sunday, February 12, 2006
My particular area of research interest is in the history of the lives of people with cognitive disabilities, especially those outside institutions, living in the community, in families, towns, schools, churches, farms, cities. And that certainly might include courthouses. So I ran a search on the word "idiot," and wasn't at all surprised to see several cases appear: In 1710 Mary Bradshaw stole clothing from two women, but was acquitted because "sufficient Proof [was] given in Court that she was an "Idiot." Similarly, Robert Left was acquitted of simple grand larceny in 1748, by a jury who found him non compos mentis. The transcript from Peter Cunniford's simple grand larceny trial in 1759 includes discussion of his childhood brain injury (he was attacked by dogs as a small child); his brother says "he is half foolish and thick of hearing" in his defense. (Cunniford was also acquitted.) Mary Tame was left in charge of her two-year-old sister, who drowned in a pond; but the court in 1719 found enough evidence of Mary's being an "ideot" to acquit Miss Tame. (Always check common misspellings of keywords.)
What evidence of idiocy was given, centuries before IQ testing or other assessment tools? Common knowledge and behavioral anecdotes served the purpose, but medical evidence and experts could be involved. "I have seen the boys after him in Newgate-market making game of him," says one witness, so "poor foolish lad" Thomas Baggot's "weakness" was a matter of general understanding in the community (he was acquitted of breaking the peace during an 1780 riot). "It is well known in the neighbourhood that he says yes, to every thing he is asked," explained one witness in an 1825 horse-theft trial, and a former employer said of the same defendant, "if you tell him to do one thing he will go and do another." (In this case, the testimony was not enough to save the defendant; John Battle was sentenced to death and executed.) Peter Cunniford's story above shows that a plausible cause for the defendant's idiocy--a head injury during childhood, for example--would bolster the claim. A medical expert was called in the trial of John Glover, to explain that a high fever two years earlier had left the previously sound-minded defendant "a degree of idiocy, which remained, a perfect fatuity, absolute fatuity." Events in Glover's life further explained his changed mind: a child burned to death, a mugging, a pregnant wife and no means of support. Other witnesses in Glover's defense aver that his friends had applied to various Jewish charitable boards for poor relief on his behalf. (Glover was acquitted of stealing a ring.)
The "idiots" in the Old Bailey records aren't always the defendants. Seventeen-year-old Elizabeth Harvison, a dwarf who had multiple disabilities, was raped in 1725, by a fellow lodger--her mother, three midwives and several female witnesses testified to her physical state after the attack. When Samuel Street was asked why he did this, he explained, "The Devil bewitcht me." (He was acquitted of the felony.) John Arthur, an "ideot" about sixteen years old, died in jail, and a guard was accused of causing the death through frequent beatings (Arthur, it seems, was minimally verbal and incapable of basic personal care). Arthur's was ruled a natural death from exposure and infections caused by poor hygiene. In 1830, William Cole explained why he stole silver thimbles from his employer: "I earned 30s. of my master, and he stopped 15s. 6d. out of it - my wife and child were turned out of doors; my child is blind, and is an idiot." (Cole was found guilty, but the jury recommended mercy in his punishment.)
But beyond the crimes and punishments.... we learn that Elizabeth Harvison was carried about by family and friends, and included on trips to the local alehouse; that Peter Cunniford had steady employment in the building trades, with a reputation as hard worker; John Battle also supported himself, as a farm laborer. Caleb Brookes, a coal warehouse employee of "good character," was ill-used, and easily led by "artful persons" into crime. Plenty of details about everyday life; but also plenty of questions: Who cared for John Arthur for the sixteen years before he landed in jail? What happened next for Elizabeth Harvison, with the stigma of rape victim added to her list of social differences? Did John Glover get the relief he needed? Did William Cole receive the mercy recommended?
Much of the history of people with cognitive disabilities is written from just such snapshot sources--probate records and wills, criminal proceedings, incapacitation hearings, commitment papers (see cites, below). These sources, valuable as they are, catch many families and individuals at the point of crisis and dysfunction: a major event has occurred to require the attention of the law, whether it's a death, a crime, a bankruptcy, a contract made or broken. We need more context for these stories of extremity, from the documents of everyday life: business ledgers, church minutes, census notations, family letters, grave markers, popular songs and stories. Vernacular sources for disability history might supply the needed background to keep the likes of Elizabeth Harvison and John Glover from being mere tragic anecdotes.
More Cognitive Disability History from Court Records:
Gudrun Hopf, "'Cretins' and 'Idiots' in an Austrian Alpine Valley in the Late 19th and Early 20th Centuries: Interests, Social Norms, and Institutions involved in the Attribution of 'Imbecility'," Crime, History, and Societies 3(1)(1999): 5-27.
Mark Jackson, "'It Begins with a Goose and Ends with a Goose': Medical, Legal, and Lay Understandings of Imbecility in Ingram v. Wyatt, 1824-1832," Social History of Medicine 11(3)(December 1998): 361-380.
Douglas V. Shaw, "Infanticide in New Jersey: A Nineteenth-Century Case Study," New Jersey History 115 (Spring/Summer 1997): 3-31.
Recommended further reading:
Elizabeth Bredberg, "The History of Disability: Perspectives and Sources," Disability Studies Quarterly 17(Spring 1997): 108-116.
David Wright and Anne Digby, eds. From Idiocy to Mental Deficiency: Historical Perspectives on People with Learning Disabilities (Routledge 1996).
Steven Noll and James W. Trent, eds. Mental Retardation in America: A Historical Reader (New York University Press 2004).
--John Belluso, in a 2005 interview for the San Francisco Observer
Word came over the DS-Hum listserv Saturday that playwright John Belluso has died in New York, at the age of 36. Read here to see what a huge loss this is. Or here for a video clip. Or here for an newspaper interview from May 2005. Or here for an online roundtable discussion he led, titled "Possibilities: Disability Within Theatre." His plays Henry Flamethrowa, Gretty Good Time, The Body of Bourne, The Rules of Charity, and Traveling Skin are described here.
UPDATE (2/13): Here's the Playbill obituary for Belluso, published today.
Wednesday, February 08, 2006
And this shirt can be yours! For the next 3 weeks, the first ADAPT t-shirt is available to bidders at a special auction page on the National ADAPT website. After that, the shirt will go up on eBay for one week. The auction closes March 15, 2006 and the winning bid will be announced on the ADAPT website and the DS,TU blog. Speaking personally, I highly value my activist t-shirts, and I can think of no better way to demonstrate your connection to the 'ragged edge' of the American Disability Rights Movement.
Reference: 'An auction - the first ADAPT disability rights "T" shirt,' http://www.adapt.org/tshirt1.php
Losing My Sight
I never knew that by August
the birds are practically silent,
only a twitter here and there.
Now I notice. Last spring
their noisiness taught me the difference
between screamers and whistlers and cooers
and O, the coloraturas.
I have already mastered
the subtlest pitches in our cat's
elegant Chinese. As the river
turns muddier before my eyes,
its sighs and little smacks
grow louder. Like a spy,
I pick up things indiscriminately:
the long approach of a truck,
car doors slammed in the dark,
the night life of animals--shrieks and hisses,
sex and plunder in the garage.
Tonight the crickets spread static
across the air, a continuous rope
of sound extended to me,
the perfect listener.
Tuesday, February 07, 2006
Samuel R. Bagenstos, Disability Law blog, http://disabilitylaw.blogspot.com
Thursday, February 02, 2006
The confirmation of Samuel Alito as US Supreme Court justice just this week, and the Supreme Court's ruling on physician-assisted suicide law in Oregon a couple weeks ago, were matters of grave concern for many in the disability community -- but you might not read about that in the newspapers, as Mary Johnson noted. That's why you need the blogosphere. Google tried to celebrate Louis Braille's birthday with a faux-braille logo on 4 January--but Google's continuing inaccessibility for blind users is all too real, notes the Blind Access Journal. An online petition drive is underway to bring Google up to speed on this.
From my (current) home state, California, a few stories worth noting: the deceptively named "Opportunity to Repair Act of 2006" will be a proposition on our ballots. Seems fifteen years since the passage of the ADA, some folks still need more time to get accessible (news accounts of this topic are becoming a tiresome genre of their own). Mary Johnson, Ahistoricality, and Orac Knows are watching this one. But in good California news, longtime disability rights activist, author, and radio host Shawn Casey O'Brien is running for State Assembly (official campaign photo above, left).
Blogs are often quite personal, but this past month a few disability bloggers have gotten really intimate: Timmargh shares his last two ID photos taken for his "disabled person's parking card"--the most recent being taken with Tim in bed, pillow in full view. Even more personal: Alex at Pseudarthrosis shares recent x-rays of her own hips and knees. (Orthopedic xrays should come in wallet size, like kids' school pictures--they'd be so much handier to spring on unsuspecting strangers.) David at Blob is recuperating from a broken shoulder--but he's still online, and has the pictures to prove it. Kestrell has posted part one of her memoir, in which Coyote juggles eyeballs, Shakespeare is quoted, Dickens is loathed (by a real "half-blind orphan" who is definitely not interested in being a sentimental stock figure), and "
This blog has noted random disability items from the world of Bollywood in the past (here, and here), but Nilesh Singit has posted a more detailed listing of current Bollywood titles featuring disability themes--check it out. And staying with intersections between Asian cultures and disability for a moment, momblogger Kristina Chew at Autismland wonders if growing up in California with her Cantonese-speaking grandmother Ngin-Ngin was, in retrospect, good preparation for the non-verbal communication skills she needs in raising her son Charlie.
Got a chair in need of repair? Lisa Egan had flashing castors installed on hers most recently, saying "If the fungus growing at the back of my kitchen cupboards in my dingy bedsit has hallucinogenic properties, I'll have everything I need to enjoy my own mini-rave!" Agent Fang, meanwhile, went and tried to fix her own wheelchair: "Taking it apart was easy. Mark this. It is the signal that things are going too well," she explains ominously.
Did someone say Valentine's Day? Oh, okay--well, if you're British, disabled, over 18, and in love, send a picture of yourself and your partner in a liplock to the folks at Ouch!--and they'll judge your technique and recommend specific oral-motor therapy goals for you. No, that's not true, but they will give a "romantic prize" to the winning photo. You have until 13 February to show them how it's done.
And finally: The Super Bowl is this weekend. Football fans, be sure to use your lucky leg to cheer on your favorite team.
The next roundup should be in early March. Tips are always welcome; it's been so exciting to see the number of blogs I need to check grow, grow, grow with each passing month.