October 31: Dale Evans and Judy Fryd

Two influential mothers of children with developmental disabilities were born on October 31, just a few years apart. The better known of the two was American entertainer Dale Evans, born on this date in 1912; she wrote the cowboy standard, "Happy Trails to You," among other songs. She also wrote the parent confessional Angel Unaware (1953), about her daughter Robin Rogers (1950-1952), who had Down syndrome. The royalties of the bestselling book were donated to early work of the ARC (then the Association for Retarded Children). Read Dick Sobsey's Inclusion Daily Express essay The Other Dale Evans to learn more.

The lesser known of the two (shown above) was Englishwoman Judy Fryd, also born on this date, but in 1909, in London. The oldest of her four children, Felicity (1938-1993), was denied access to any kind of schooling, so in 1946 she wrote a letter to a magazine called Nursery World, and ended up organizing the Association for Parents of Backward Children. The group Fryd founded is now called Mencap, the biggest advocacy organization for people with learning disabilities in the UK. Judy Fryd was Mencap's vice president for twenty years, and before that served a quarter century as editor of the Association's magazine, Parents Voice.

Dale Evans died in 2001; Judy Fryd, in 2000. Their work, and that of countless other parents and advocates of their generation, means that today, more rights are recognized, more children are educated, and more people are embraced in their families and communities.

Some Print Sources for Further Reading:

Barbara Bair, "The Parents Council for Retarded Children and Social Change in Rhode Island, 1951-1970," Rhode Island History 40(November 1981).

Katherine Castles, "'Nice, Average Americans': Postwar Parents' Groups and the Defense of the Normal Family," in Mental Retardation in America: A Historical Reader, Steven Noll and James W. Trent, eds. (NYU Press 2004).

Kathleen W. Jones, "Education for Children with Mental Retardation: Parent Activism, Public Policy, and Family Ideology in the 1950s," in Mental Retardation in America: A Historical Reader, Steven Noll and James W. Trent, eds. (NYU Press 2004).

The Upcoming Mid-Atlantic Popular American Culture Association; MAPACA for short

This coming Friday November 4th the MidAtlantic Popular American Culture Association, MAPACA, will be holding their annual conference. Yours truly will be presenting a paper on Mutant and Cyborg Images of the Disabled Figure in Science Fiction. You can check out the conference schedule online at MAPACA conference listing. Hope to see you there.

Keeping an eye on the possible SEPTA strike

Temple University and the Institute on Disabilities are drawing up contingency plans given the possibility that SEPTA busses and subway trains will not be functioning after 12:00 am on Monday morning, October 31. Frightening, eh? If you are Philadelphia residents, you know what this means for the wide portion of our population that depends on public transportation. I usually bike to work, but may well be stepping in with my truck to be sure that my colleagues like Carol Marfisi that use Paratransit make it in next week. More insider information can be found on the blog of part-time SEPTA employee Pa_SuburbanGuy .

sharing some of my news

Dear Readers,

I have so much to tell you about the past few days. I've hardly have a chance to breath let alone keep in touch with loved ones. To a certain extent I've intentionally stayed busy - and succeeded so far in staving off loneliness while my partner Carla Keirns is working hard in Botswana [see her news here]. As you will see from reading this message, it has been an eventful week!

The same Wednesday morning that Carla flew out of Philadelphia on South African Airlines, Carol Marfisi and I headed up to New York City for the "Introduction to Disability Studies" presentation at Columbia University. It was a fun day where we had the opportunity to interact with Disability Studies scholars Simi Linton and Kim Reid, introducing our new student Scott Gordon to their perspectives. We also tried to advertise our new Graduate Student listserv amongst the audience, but found that besides Scott and Simi Linton's assistants, there weren't any graduate students in attendance. Our intention to head down to hear Richard Thornburgh's speech at the New York Law School that evening was foiled, as I didn't have a sufficiently detailed map, and the person directing our driver hadn't driven in the city for perhaps 20 years. It ended up as a comical loop trip around the lower tip of Manhattan before we took the decisive step of driving back home. Carol's assistant Maggie and our new student Scott were in a good frame of mind and helped to make the trip more enjoyable.

Friday evening we had another New York City adventure. Through one of my blog subscriptions [Philly Future], I had read about a young artist with multiple disabilities who also happened to be an incredibly soulful jazz singer. I showed the artist's website to my colleague and disability culture fan Carol Marfisi, and we decided to check out her next show. It so happened that this show was scheduled for Friday evening at the Staten Island Club for the Deaf. So off we drove - Carol, Mike and Carol's Liberian personal assistant, Matina - to listen to a jazz singer perform at a Deaf club. How disability multi-cultural could one get?

The club itself was a blank storefront set back from the street, painted grey with 'SICD' scrawled in tape on the window, and a ripped up and barricaded sidewalk in front. You certainly wouldn't go through that hazed glass door if you didn't know the address ahead of time. It was raining, so I headed in on my own to check out the scene. The gentleman at the door seemed friendly enough and didn't speak or even respond when I said "Hello." We gestured to one another as I checked out the bar and the side room with seating and a makeshift stage under a bare light bulb. The flyers for the show indicated three artists for a 7$ package rate, so I paid for my ticket and went back to escort Carol and Matina. Matina in particular had no idea what to expect, only learning 20 minutes earlier about the nature of this concert and professing that she didn't like jazz or blues music.

We camped out in the front row - I sat on the right-hand side of the aisle, and Carol sat on the left-hand side. To my right were several young women and men who appeared to be using signs in addition to their voices to communicate. They seemed like typical young adults. To Carol's left was a young woman wearing large dark sunglasses, oversized tan beret, and a large scarf. This fashionably dressed woman chatted amiably with Carol about the scene. Carol didn't recognize Melody Gardot right away, but I had seen her picture on the website. On the wall to the right was a memorial to the great teams of Deaf baseball players sponsored by the Staten Island Club for the Deaf. Carol wanted me to take a picture of the wall on her cameraphone. I felt like I should check with Melody first. Her website mentions that she prefers that audiences refrain from taking flash pictures, which can trigger her neurological symptoms. Since her accident, getting hit by a car while riding her bike a year or two ago, Melody has been struggling with debilitating pain and auras. She walks now with a cane, even though she is barely 20 years old. Anyway, as I mentioned Melody's name, she perked up, and it finally dawned on Carol who she was sitting next to. The friendship blossomed from there - Melody introduced us to her mom who was sitting against the wall to the left, and we ended up taking several pictures (without flash) of the entire group. One of these pictures, and Carol's version of this story, can be found below.

The Staten Island Club for the Deaf has served as gathering spot for NY Deaf community for over 50 years. In March 2005, SICD opened its doors to something new; a interpreted live musical performance by singer/songwriter Christian Davis. That night had proved very successful, bringing 80 hearing and 60 Deaf people together to enjoy one event. This marked the second live musical performance at the club. The performing artists, Christian Davis, Christina LaRocca and Melody Gardot, coordinated with selected sign language interpreters, meeting earlier in the day to rehearse and share song lyrics. Christian Davis knew enough signs to introduce the songs himself. With his throbbing bass guitar, we could feel the vibrations through the floor. Many of the songs were accompanied by Sign Language interpretation. The audience cheered for both the performers and the interpreters.

Melody walked up to the stage gingerly and set up for what turned out to be a stellar set, including 'Wicked Ride,' her wittiest and most obviously radio-friendly song. Explaining that she was feeling a little dizzy/woozy that evening, she said "good night" after that set, and we left with her to get back to Philadelphia. I got back home that night at 1:00 am with a smile on my face.

The following morning I pulled myself out of bed and attended the symposium End-of-Life Decision Making: The Right to Die? organized by graduate students from the Temple University Law School. Some of the heavy hitters from the arenas of law and ethics, the independent living movement, and the 'death with dignity' movement were there to present. The presentation, appropriately enough, was held in an old chapel that had been remodeled into a meeting space, and the audience was largely lawyers seeking professional development credit. The papers and discussions were scholarly and thought-provoking. Receiving particular scrutiny were Oregon's approach to physician-assisted dying, and the politics of the Terri Schiavo case. It was a good preparation next week's focus group. Carol Marfisi and I are heading up to Harrisburg to meet with a number of stakeholders, family members and people with disabilities who are well-known in Harrisburg policy circles. Last June the Pennsylvania Department on Aging held a conference about improving care of Pennsylvanians experiencing terminal illness and increasing public awareness of important end-of-life decisions and safeguards. We will be helping to draw out the perspectives of focus group participants on difficult ethic case studies, in the hopes of showing how these end of life discussions impinge on the mission of organizations concerned with protection and advocacy for
Pennsylvanians with disabilities.

Yesterday (Tuesday) was particularly busy. It was the day of the Ramadan Fast-a-Thon, sponsored by the Temple University Muslim Student Association. This is an annual fundraiser, where students and staff at Temple University are invited to join in the Ramadan fast, if only for one day. The president of the MSA Omar Arshad came to recruit students from my undergraduate 'Schooling and Development in Third World Societies' class. Several volunteered to sign the pledge, requiring a daylong fast. No food, no water, to consumption through the mouth of any kind. In addition, we are to focus on maintaining clean thoughts and focus on showing compassion toward others - no verbal lashing out, backbiting, etc. After fasting from 6:00 am to 6:00 pm, all are invited to join the campus' Muslim students at Mitten Hall's great court. We break the fast with dates and bread and then share a feast prepared by the Muslim students.

I have been looking forward to this day, and ate a full meal the night before. Unfortunately I woke up even earlier than I had intended that morning, at 3:30 am, with a gurgling tummy! Well, at least I had plenty of time to down my breakfast of Cream of Wheat fortified with fruit before the 6:00 am sunrise. At the 11:40 - 1:00 class session that morning, several students told me that they were indeed fasting. Stacey Brown was experiencing cramps, but said she would make it. Anwar Jones forgot about the fast, but hadn't had his breakfast anyway that morning. He would have qualified except for the fact that he was chewing a stick of gum. That evening Alicia showed up to join us. She had overslept that morning and missed breakfast, but didn't seem too much worse for wear. After breaking the fast, the Muslim students engaged in their evening prayers - non Muslims watched with interest - before we all formed lines (sex segregated, I might add) and filled our plated at the buffet. While eating the great Middle Eastern food, we listened to distinguished speakers explained the importance of fasting to Muslims, and the purpose of this event. Philadelphia businesses sponsored the fasting students. The funds collected from these businesses, and from the collection plate passed at the banquet, were given to the Kashmir Disaster and Development Fund, a new non-profit created in the wake of the Pakistan earthquake.

I need to get back to my grading, but thought you might enjoy hearing about one of the more interesting weeks I can remember. Or maybe others have been similarly memorable, but I haven't had cause to write them down. Mike

A few current happenings in Deaf theatre...

On Sunday, the LA Times had a long article about Deaf West's new drama, "Open Window," now playing at the Pasadena Playhouse; and they followed up Monday with a substantial and positive review of the show. Linda Bove plays a linguist, and Shoshannah Stern her daughter, a psychologist assigned to evaluate a "wild child" case, a deaf young man apparently without language from an badly abusive and deprived childhood. Next up for Deaf West, another musical, from the same director who helmed the company's acclaimed versions of "Oliver!" and "Big River"--this time, an (as yet untitled) original adaption of the Sleeping Beauty story. (There are LA Times links in this paragraph that will probably expire--so read them while they're hot.)

Meanwhile, in Rochester NY, the National Technical Institute of the Deaf (NTID) Performing Arts program is offering "The Passion of Dracula" just in time for Halloween (October 27-30). There's even a Halloween party after the Saturday night show, and a matinee on Sunday.

Changing Social Representations of Disability

Mike Dorn, Coordinator of Temple University's Graduate Certificate in Disability Studies and Assistant Professor in the Urban Education Program, helped kick of the Pennsylvania Association of Rehabilitation Facilities (www.parf.org) conference at Penn State on September 28, 2005, where he appeared on a plenary panel together with disability studies scholars Douglas Biklen of Syracuse University and Michael Berube of Penn State. Each were invited to speak very generally on the representation of people with disabilities; Mike Dorn, a cultural geographer, offered an overview of the historical construction of disabled bodies and the institutions charged with “administering” disability in the Philadelphia area during the nineteenth century. Douglas Biklen spoke of the representation of mental retardation in films like "There’s Something About Mary", "The Eighth Day", and "Rain Man". Michael Berube wrapped up the panel with a critical analysis of racial and disability discourse in the media coverage of Hurricane Katrina. All of the papers will appear in the meeting proceedings. Michael Berube has also posted his paper on his blog, http://www.michaelberube.com/index.php/weblog/disability_and_disasters/

On October 18th, Mike Dorn was also interviewed on the potential of websites and blogs as avenues for reaching consumers with disabilities. The story will appear in OMMA: The Magaine of Online Media, Marketing, and Advertising (http://publications.mediapost.com).

Shout Out for Disability Culture

I guess I am a diehard skeptic, or at least more dubious that I realized I was. I never thought I would experience disablity culture in a truly arts culture way heading out to the clubs last night, but "hallelujah" I was wrong. Instead I stumbled upon a Summa Cum Lade experience combining disability culture, Deaf culture, and a cool intertergenerational vibe. Mike happened upon an interview and the notice about an upcoming show over the internet, and together with my friend Matina we set out for our inocuous coffeehouse, the 50 year old Staten Island Club for the Deaf. If you were to attempt to characterize us, our group was composed of a middle class able-bodied white male, a physically disabled feminist and a beautiful French-speaking Liberian. We certainly didn't feel like we were a 'typical' audience for this club. But somehow when we entered this small, retro-looking cafe, our identities seemed to merge and at the same time became magnified and more defined. I sat next to this chic looking woman with so much classical, artsy essence coming from her outward as well as inner presentation. She initiated conversation (small talk) with me, an act that flattered me. As we progressed in our conversation I suddenly realized I was hanging with the performer that we came to see. Her unassuming, modest demeanor didn't surprise me, though. Usually the bigger the talent the smaller the scaffolded ego.



This woman, Melody Gardot, is a huge talent. She sings her songs without pretense, just as she interacts with strangers who she has never met. Her voice was confident and mature. a direct contrast to her fresh, youthful appearance. At times, it was hard to wrap my head and spirit around her persona . She sang the narrative of a life I had myself experienced; how could she know these feelings, this wisdom, this cruel reality, this power to toss your head and look people in the eye, letting them know you're going to be who you're going to be? I don't know whether Melanie identifies herself with the worn and tattered disability rights community but if she doesn't, that's alright ... it's all good. Better than good. It's fine and Melanie Gardot is a colorful, striking swath of fabric, essential to creating the more vivid and striking Disability Culture quilt of the twenty-first century.
Melody's personal website - http://www.myspace.com/melody
Melody's professional site - http://www.melodygardot.com
Original interview Mike read - http://www.phillyfuture.org/node/1759
(overly dramatic, but I'm glad I found it! MD)

"Crazy Bet" and her 19c sisters

Reading fiction and researching fact this week has kept me thinking about how easy it has been in the past for women to slip into the category of "madwomen"--either intentionally, or at the convenience of others.

First, the factual case: Elizabeth "Crazy Bet" Van Lew (1818-1900, pictured at left), lifelong Richmond VA resident, was also a Quaker-educated abolitionist who convinced her mother to free their family's slaves in the 1850s. By the time the Civil War started, Elizabeth was a spinster in her forties, and her politics had already made her seem odd. It didn't take much to nudge her own reputation into the "madwoman" zone--she just dressed shabbily, kept her hair messy, and muttered to herself, enough that she was seen as a harmless wretch. Thus, she managed to maintain an amazing network of informants and message-passing, enough that Ulysses S. Grant considered her an invaluable source of wartime intelligence. After the war she was intensely disliked and impoverished (she spent her family's fortune during the war, in part for bribing wardens and such), but was given the government job of Postmistress of Richmond in recognition of her service; when she died, grateful Bostonians erected a memorial over her Richmond grave.

But the more usual story we find is the sadder case: I just read Jean Rhys's Wide Sargasso Sea (1966), in which two women are accused of madness, or driven to it, or both. A mother's disabled child dies after injuries sustained in a fire--and her frantic despair is enough to call her mad, and lock her away forever. Her daughter is accused of madness by association, because a fortune-seeking husband wants her out of the way. The unnamed husband is meant to be the Rochester character in Jane Eyre; the wife, the archetypal "Madwoman in the Attic" in the same novel. Rhys took on the challenge of filling out Bertha Mason's back story, to brilliant effect. The women are friendless, in the sense of having no one with any power who can help them. They have husbands, but the husbands are part of the effort to see madness in every quirk.

The husband problem reminded me of Elizabeth Packard, the midwestern minister's wife who was institutionalized in the 1860s because she didn't want to attend church with her mate. When she got out (after three years), she worked for reforms in state asylums, including the freedom of inmates to receive and send mail, and stricter standards for certifying insanity, especially in the case of married women. In 1864, in Illinois, only her husband's word and one doctor's testimony were necessary to put her away.

It was so, so easy to see a woman as a madwoman in the 19th century, especially if the beholder needed her to be mad. Elizabeth Van Lew found a way to use this thin line to her advantage; Elizabeth Packard worked to protect the women who might too easily be pushed over that line by their husbands.

Print sources of further information:

Elizabeth R. Varon, Southern Lady, Yankee Spy: The True Story of Elizabeth Van Lew, A Union Agent in the Heart of the Confederacy (Oxford University Press 2003).

David D. Ryan, A Yankee Spy in Richmond: The Civil War Diary of 'Crazy Bet' Van Lew (Stackpole Books 1996).

Myra Himelhoch and A. H. Shaffer, "Elizabeth Packard: Nineteenth-Century Crusader for the Rights of Mental Patients," Journal of American Studies 13 (3)(1979): 343-375.

Barbara Sapinsley, The Private War of Mrs. Packard: The Dramatic Story of a Nineteenth-Century Feminist (Kodansha America 1995).

Paul Pena, 1950-2005

The recent passing of bluesman Paul Pena earlier this month got a mention in the New York Times, Time magazine, Billboard, and elsewhere. Pena, born in Massachusetts to Cape Verdean immigrant parents, was blind from birth, and attended the Perkins School for the Blind near Boston. He is best known most recently for his explorations of traditional Tuvan throatsinging, as documented in the film Genghis Blues. He taught himself the unusual vocal skill, and became the 1995 "kargyraa" style throatsinging champion in a competition held at the National Theatre of Tuva. Later in life he used a wheelchair. He died from complications related to pancreatitis and diabetes.

Panel to catch this weekend...

It's exciting to see more and more disability studies panels on conference programs. But Kestrell gives us the heads up that she'll be part of a session this weekend that sounds like a great time:

Representations of Disability and Difference in the Harry Potter Universe
9:00 am - 10:45 am
Alicia Verlager (that's "Kestrell")
Mike Gill
Heeral Mehta-Parekh
Maria Molnar

Gotta be there? Well, get to Salem, Massachusetts, this weekend (6-10 October) for "The Witching Hour," a symposium on the Harry Potter phenomenon. Elsewhere on the program are Heather Lyda, speaking on "Harry Potter: Disability Fantasy," and Shannon White speaking on "Luna Lovegood as Holy Fool."

(I believe this is my second Harry Potter reference in this blog--maybe I should explain that I've never read or owned any of the books, and only watched one of the movies. My reading kid is still a little too young for Potterdom; but I know, I know, the day is coming... --PLR)

Disability Blogs Roundup, #3

Michael Bérubé gets first mention here, for all kinds of reasons: he's a friend-of-a-friend (through Penn State hockey), his writing was the first disability studies stuff I ever read (1994), at a time when I really needed that perspective; and he produces one fine blog. Oh, and his post on Disability and Disasters mentions DS,TU's own Mike Dorn. So go read it.

Next Mary Johnson deserves notice, for two long posts at Edge-Centric on Gonzales v. Oregon, an upcoming Supreme Court case on physician-assisted suicide. On a related topic, Ballastexistenz writes on why the crime of murdering one's adult child is somehow mitigated in the public mind when that child is disabled. "Not really a threat to anyone," she sums up the prevailing opinion. "Just killed her own son, but isn't really a threat to anyone."

Disability etiquette seems to be an ongoing issue, on blogs about disability and elsewhere. The Angry Gimp ponders how she wants to answer the blunt question, "What happened to you?" Her answer (and it's not everyone's): "I'd rather someone take the risk of offending me than feeling alienated and curious for years." But on the wicked side, "It's fun telling people that I've broken 27 bones and watching their eyes pop out of their head."

Lots of non-disability bloggers might find Angry Gimp's post enlightening; there still so much work to be done in dispelling the pity/horror/guilt-driven responses to disability. Xta and Entelechy both posted recently about a lurking discomfort in the presence of people with severe disabilities. The Feminist Mormon Housewives were discussing how they felt about having designated parking for expectant mothers, right alongside (or more likely, in place of) the wheelchair-accessible parking.

Meanwhile....Kestrell's kinda hoping new technology will let her get a braille tattoo...and Scott Rains knows where you can find an accessible restaurant in New Delhi (with a photo of the new ramp at Nirula's to prove it).

As usual, tips are always welcome. The next roundup should post in early November.