The Review of Disability Studies: An International Journal Volume 4, Issue 2 Copyright 2008

To Dance Beneath the Diamond Sky with One Hand…Part 2 Edited by Alex Lubet, University of Minnesota Minneapolis & Na’ama Sheffi Sapir Academic College Ashkelon, Israel

Editor’s Note: Th is issue comprises the second installment to the forum on music edited by Alex Lubet and Na’ama Sheffi . To view Alex’s introduction to the forum and to read the fi rst installment, please view the online version of Volume 4, Issue 1 at www.rds.hawaii.edu or contact rdsj@hawaii. edu to order a print copy.

Table of Contents (Beyond) Popular Culture

Transformer Man: An Exploration of Disability in Neil Young’s Life and Music p. 3 Isaac Stein, Canada

People with Disabilities Get Ready: Curtis Mayfi eld in the 1990s p. 11 Ray Pence, USA

“Hear us Shout:” Music Celebrating Disability Pride and Liberation p. 23 Reviewed by Steven E. Brown, USA

Beyond Disciplinarity

Music to My (Deaf) Ears: The Installation Work of Joseph Grigely p. 29 Ann Millett, USA

Les Paul at 91 p. 41 Alex Lubet, USA

1 v4 i2 Book Reviews p. 44

RDS Information p. 50

Subscription Form p. 53

2 Transformer Man: An Exploration of Disability in Neil Young’s Life and Music Isaac Stein University of Toronto

Abstract: Th is article begins with a short per- I found very few peers or adults who were sonal narrative of my own struggles growing up willing to discuss my feelings with me directly or with a form of cerebral palsy (right hemiple- honestly. Th e people around me seemed afraid gia), and the way music – and in particular Neil to hear about my experiences with a disability Young’s songs – provided a crucial emotional – when I attempted to voice my growing sense and cathartic outlet for me. I then examine Neil of frustration, pain, and above all, exclusion, the Young’s intimate personal connection with dis- usual response I got was, “Oh…nobody notices ability, including his own struggles with polio it” or, “Oh…it doesn’t really matter.” Th ese were and epilepsy and his experiences raising his two nice sentiments, but it was hard for me to believe sons Zeke and Ben, both of whom have cerebral that nobody was noticing my spastic right arm palsy (one milder, one quite severe). I delve into when I was consistently being called a “gimp” or many of Neil’s songs that either subtly or explic- a “crip” in the schoolyard. itly explore issues of disability and diff erence, such as Mr. Soul and Transformer Man. I con- Unable to fi nd real emotional support from clude by recounting my experience attending most of the people in my life, I found myself the Bridge School Benefi t, an annual concert turning more and more to music. Th e emotion- put on by Neil and his wife Pegi to raise funds al intensity and nakedness of bands like Pearl for the school they founded for disabled chil- Jam and Nirvana struck a chord with me - here, dren. In sum, this article will attempt to capture at least, people weren’t averting their eyes from something of the way in which Neil Young and uncomfortable feelings. As often happens to

(Beyond) Popular Culture (Beyond) Popular other artists have created music that is both per- youths living with diff erence as a fundamental sonally therapeutic and collectively empowering part of their lives, my suspicion of “normalcy” for members of the disabled community. was sprouting up quickly: I remember feeling certain that despite (or perhaps because of) Key Words: Neil Young, music and disability, their “unadult” jobs and behavior, Eddie Vedder music as empowerment or Kurt Cobain would have been willing to sit down and honestly talk with me about my dis- As a child and teenager growing up with ability in a way so many of the “normal” adults right hemiplegia, a form of cerebral palsy that I knew seemed unable or unwilling to do. It limits the movement and sensation in the right seemed to me that the world of those who made side of my body, feeling diff erent was an un- and loved music was inordinately populated by avoidable part of my everyday life. Most boys people who not only accepted diff erence, but want to be good at sports – I was no exception. celebrated it. Th is world was a welcome change I couldn’t be, and it hurt. Most boys take pride from my schoolyard. in learning to tie their shoelaces – I was no ex- ception. I couldn’t learn to tie them, and it hurt. As I delved deeper into music, I found myself Most boys get nervous about the way they look gravitating somewhat ineluctably towards the and move when they’re dancing with girls – I orbit of one particular musician: Neil Percival got really nervous. My young life with a disabil- Young, the transplanted Canadian artist who ity sometimes felt very lonely. made his home on a ranch in Northern Cali- fornia. Neil Young certainly knew something

3 v4 i2 about expressing painful feelings with naked in- adult onset of severe epilepsy, and most recent- tensity. In his country hit “Old Man,” he bares ly, a brain aneurysm that nearly took his life. his need for “someone to love me the whole day While most stars might have wanted to distance through” (“Old Man,” 1972), while in his well- themselves from any or all of these conditions known rock anthem of self-loathing he repeats a to preserve an “attractive” public image, Young’s simple phrase that resonates with anyone honest considerable distaste for conventional concep- enough to acknowledge self-doubt: “Why do I tions of attractiveness enabled him to shrug off keep fucking up?” (“Fuckin Up,” 1990). I knew the tremendous pressure from his handlers to I’d hit upon something genuine. “keep all this weird polio/epilepsy shit quiet” (MuchMusic TV, 1986). Keeping up an attrac- But my connection to Neil Young’s music tive public image was far from the only trapping quickly moved beyond his unflinching honesty. of fame Young resisted: he was so uncomfort- The deeper I immersed myself in Neil Young’s able with widespread adulation that his man- literally bottomless catalog, the clearer it became ager would regularly harangue Young about to me that Young was an artist who not only cel- his “unquenchable determination to destroy ebrated difference, but he appeared to embody your career and take me down with it” (Brit- it. In his over 40 years as a professional musician, ish Radio-2 FM, 1987). In the liner notes to his Young had doggedly resisted the music industry’s greatest hits album, Decade, Young had this to efforts to neatly pigeonhole or categorize him in say about his smash country-pop hit “Heart of the way it eventually does to almost all of its art- Gold”: “Heart of Gold put me in the middle of ists. He ricocheted from solo acoustic nakedness the road. Traveling there soon became a bore so to feedback-soaked garage rock in the blink of I headed for the ditch. A rougher ride but I saw an eye, and before you blinked again he was per- more interesting people there” (Decade, 1977). forming with a 10-piece horn section. He was a Disability, a fixture in Young’s life since the age folk singer, a cowboy crooner, an arena rocker, of six, proved to be one of the most interesting a Hendrix-esque guitar soloist, an acoustic trou- companions that Young would topple headlong badour, and a bluesman all balled up into one into the ditch with. It’s no surprise that an art- – and you never could predict which Neil would ist so personally and professionally resistant to show up to the recording studio or concert stage. dominant culture and expectations would allow He was vulnerable and aggressive and helpless his experiences and feelings around disability to and powerful and shy and scary and funny all leak steadily into his music, often at the cost of at once. I intuitively felt that anyone as willfully commercial success. In Neil Young’s life, disabil- resistant to categorization as Neil Young must ity has been alternately triumph, struggle, grief not have been a big fan of labels and assump- and joy – and in each of these incarnations, it’s tions – assumptions, for instance, like “disabled been a powerful artistic muse. equals weak” or “handicapped equals helpless.” When it came to Neil Young’s music, normal “Did I get songs from the [epileptic] sei- categories, assumptions and labels didn’t make zures? Probably. “After the seizures…you a lot of sense. start waking up. Then you find out who you are by looking around. Having to As it turned out, they made just as little learn my own name – I had to do that sense when it came to his personal life – a life a couple of times. Learn who I was. Get I was fascinated to discover has been touched familiar with it. Then hear the first LIE indelibly by disability in multiple forms. Over – or the first thing somebody would say his 60-odd years on the planet, Neil Young has that wasn’t exactly true – it would be like experienced a childhood bout of polio that per- a fucking terrible trauma to me when manently weakened the left side of his body, the I was coming back from these seizures.

4 It’s like being a baby. Anything that’s is moving much faster / Is it strange I should not pure, you go, “What the?” – because change? I don’t know, why don’t you ask her?” you’re starting over again, regrouping. (“Mr. Soul,” 1967). Th ere is certainly fear and Everything’s coming back together. I anxiety in these lyrics, but there is something of can remember one seizure at the ranch in an ironic strength and humor to them as well 1974… probably the last big one I had. – is the clown’s seizure a “trick” he’s playing on It was mind-blowing…so I had just had an unsophisticated audience? What is actually a grand mal seizure and I went for a walk going on behind that innocuous smile – who’s – and I had just barely fi gured out that it winning the race between what the world can was my ranch – and this doctor was with see (the face) and what’s going on inside (the me and he was sayin’, ‘Now, we’re not head)? Perhaps more crucially, which experience gonna tell people this happened, because – the external plastered serenity or the form- it will upset them. Th e only people who less internal combustion – is more real? Young need to know about this are you and me makes no judgments. And even at this early and Russ Kunkel’ – a drummer who was stage in his writing career, Young off ers a subtle there, too. So it was like being born again challenge to the predominant view of disability and wakin’ up and seein’ everything is – in this case, epilepsy – as defective or shame- beautiful – seein’ things for the fi rst time - ful. Is it really that strange, really such a disas- and then having someone tell you, ‘Well, ter, that his seizures should change him every this is not what it seems. We’re not gonna now and then? By directing the listener to ask tell. People are not gonna know what this question of an unidentifi ed female, Young happened.’ So it’s a lie. Why should there is perhaps commenting on the sexual insecurity be a lie? When you’re born, I don’t think that so often accompanies disability. But, under- you can conceive of telling a lie. But if neath the anxiety is a glimpse of the notion that you can imagine being born, and within if the woman in question could be thoughtful 10 minutes after you’re born, you’re in- enough not to see the clown’s seizures as strange troduced to the concept of a lie – y’know, or disastrous, the clown might suddenly feel you’ve only been alive for fi ve minutes, quite a bit better about himself without needing and now they’re teaching you how to lie. the seizures to disappear. So there’s something that happens there” (McDonough, 2003, pp. 176-177). Young wrote several other early songs that explored the feelings of isolation and sexual pa- Th e eff ort of uneasily trying to readjust to ralysis than can emerge out of conditions like an impure world manifests itself in many of polio or epilepsy. “Expecting To Fly,” another Young’s earlier songs, when he had not yet dis- seminal Buff alo Springfi eld tune, gives the listen- covered a medication that helped him control er a sidelong glance at Young’s fear of physical his seizures. In “Mr. Soul,” perhaps Young’s intimacy: “Th ere you stood on the edge of your most well-known song from his days as part of feather, expecting to fl y / Well, I laughed, I won- the legendary 1960s band Buff alo Springfi eld, dered whether I could wave goodbye” (“Expect- Neil devotes the entire third verse to an oblique ing To Fly,” 1967). A potential partner may be exploration of his seizures that leaves the listener waiting to fl y with him, but Young is planning feeling the same blurry sense of confusion and his exit strategy before the plane gets off the loss of control Young felt both immediately ground. Indeed, the producer of this song, Jack before and after a seizure: “In a while will the Nitzsche, recalls Young explicitly telling him at smile on my face turn to plaster? / Stick around the time that “Expecting To Fly” was about “fear while the clown who is sick does the trick of of making it with a girl” – specifi cally, Young’s disaster / For the race of my head and my face escalating anxiety as he approached his home

5 v4 i2 one night because a female admirer was wait- periences closely mirror my own. Neil Young ing for him inside and he was terrified he might penned the country song “My Boy” for Zeke, have a seizure while with her (McDonough, and it expresses both grief over his son’s suffer- 2003, p. 278). A friend of Young’s during this ing and admiration at Zeke’s determination and period named Donna Port remembers trying to self-will (1985). Once again, Young’s lyrics indi- set him up with a girlfriend of hers, and how cate a far deeper frustration with the pervasive “Neil would spend the night with her, but he’d social stigma around disability than with Zeke’s never take his clothes off. She’d get too close, and actual physical impairment. Neil would freak out” (McDonough, 2003, p. 188). Port, whose own family had been touched With the birth of Young’s second son Ben, by polio, drew a link between Young’s emaciated though, Neil would have perhaps his most pro- frame and his sexual reluctance: “His legs were found encounter with disability yet. Ben Young like toothpicks, and one day I just asked him [if is, in Neil’s own words, he’d had polio]. The look of terror gave me the “a spastic, quadriplegic, non-oral child… answer. Then it just flowed out. He was wrapped with a big heart and beautiful smile. He’s up in a blanket at the time, crying… We talked just a wonderful human being… It did a lot about how cruel kids are when you’re grow- something to me… when he was born… ing up. It explained a lot…This guy had a heavy Cerebral palsy – nobody really knows load, physically and emotionally… Neil never what it is. It’s just the name for some- felt he fit” (McDonough, 2003, p.188). thing… It’s a lot like a stroke at birth. Not fitting in is undoubtedly a heavy load, Or before birth… Ben is very sensitive but Young bore up under it with increasing defi- – we don’t know how cognizant he is. His ance and occasional glee as his career moved un- cognitive abilities seem to shift with the steadily forward. By the late 1970s, his seizures wind. Sometimes he’s real sharp, other had essentially disappeared and he was happily times he’s not. There’s no strict set of rules married to his second wife, Pegi. But disabil- with Ben” (McDonough, 2003, p. 545). ity was still part of Young’s everyday existence: Neil and Ben Young share an unusually His first child Zeke was born with a form of close relationship, and father and son spend a hemiplegia very similar to my own that left his lot of time enjoying their mutual obsession with right leg shorter than his left leg and his right model train sets. Ben participates in the activi- hand pinched. As a boy, Zeke “used to hit my ties with the help of an elongated plastic arm [pinched] hand with a spoon and say, ‘I hate attached to his wheelchair that Ben activates and you! I hate you!” (McDonough, 2003, p. 472). commands by pushing a button next to his head. Zeke acknowledges that he “couldn’t accept The system was designed by his father, and an myself as being – y’know – different…Turn- engineer who helped design the electronic arm ing doorknobs, turning on lights, stuff that I remembers that when they first got the system couldn’t do like other little boys my age would working, “I don’t know who was more excited… frustrate the hell out of me, and I’d cry until I Neil or Ben” (McDonough, 2003, p. 544). Neil fell asleep” (McDonough, 2003, pp. 472-473). himself says now that “I feel we’ve come a long Zeke’s shorter right leg meant he had to wear way – we’ve been successful dealing with what a shoe brace, and he was regularly mocked by we’ve been given to deal with. And we haven’t let his schoolmates, who called him “Bigfoot.” He it destroy us. Y’know, a lot of families break up remembers, “One girl started teasing me about when this happens with one kid, and we’ve got the shoe brace and I took it off and whacked her two. And they’re great kids – I love my kids. It’s across the head with it” (McDonough, 2003, pp. 472-473). Many of Zeke’s childhood ex-

6 just real. Th is is the condition of life they have” thing about Ben’s cerebral palsy and who were (McDonough, 2003, p. 548). patient enough to wade through some of the incomprehensibly distant vocals and decipher But the initial years after Ben’s diagnosis were some of the lyrics might have been able to piece fi lled with uncertainty, struggle, and self-doubt. part of the puzzle together. One song in particu- For Young, the best emotional outlet remained lar, “Transformer Man,” illuminates the source his music, and the songs that poured out of him of Young’s motivation for crafting the most un- during this period are some of the most creative conventional album of a career built upon defy- he’s ever written. Th ey are also among his least ing convention. commercial or accessible – and most widely crit- icized – compositions. As both a diehard Neil “Transformer Man, Transformer Man / You Young fan and a disability advocate, it seems fi t- run the show, remote control / Direct the ac- ting to me that a life as socially marginalized and tion with the / Push of a button” (“Transformer outside the mainstream as Ben Young’s would Man,” 1982). Here, Young is addressing his inspire some of the most challenging, misunder- cherished time with Ben in their model-train stood, and ultimately rewarding music of Neil barn. “Transformer Man, Transformer Man / Young’s career. Still in command / Your eyes are shining on a beam / Th rough the galaxy of love / Transform- When Neil Young released his infamous al- er Man, Transformer Man / Unlock the secrets bum Trans in December 1982, even the most / Let us throw off the chains / Th at hold you loyal members of his fan base were appalled. down”. Understood in the context of Neil’s rela- Young had recorded most of the songs of the al- tionship with Ben, the paternal tenderness that bum using something called a vocoder – a device shines through here is sharp and poignant. So which allowed him to mask and distort his voice why would Young choose to submerge this dec- to emit eerie, clipped robotic-sounding vocals. laration of aff ection for his son in gauzy layers of Th e eff ect of the vocoder was to make it seem synthesizer and fl at, robotic vocals? as though you were listening to him through a crackly World War II walkie-talkie rather than “Trans is defi nitely out-there. It went way a modern record player. Young then plugged in over everybody’s head,” Young tells McDonough these vocal tracks to a giant computer synthesiz- in Shakey (McDonough, 2003, p. 556). “Here’s er he had recently purchased. Th e results were a a guy trying to tell you something and you cannot series of murky, electronic songs that felt lonely, understand it…If you listen to all the mechani- cold and impenetrable to Young’s devoted fans. cal voices, if you read the lyrics, it’s clear that Gone were Young’s emotive, quivering voice, the it’s the beginning of my search for a nonoral, a wailing guitar and the pulsating drums. Instead severely physically handicapped nonoral person, fans were left with lyrics sung in a computerized to fi nd some sort of interface for communica- monotone that made the words almost impossi- tion. Th e computers and the heartbeat all have ble to understand and synthetic, repetitive key- to come together here – where chemistry and board and drum loops. Fans hated it and critics electronics meet. Th at’s what I was getting at. eviscerated it. To most people, listening to Trans And that was completely misunderstood. felt something like trying to wade through a waist-deep swamp in thick, rolling layers of fog. “‘Transformer Man’ is a song for my kid. Th ere was simply nothing to grab onto, either If you read the words and look at my musically or emotionally. child in his wheelchair, with his little but- ton and switch on his head, his train set So what was Young doing? At the time, no- and his transformer, the whole thing is for body had any idea, but fans who knew some- him. And people… they missed it. Com-

7 v4 i2 pletely. They put me down for fucking gram dedicated to ensuring that children with around with things that I didn’t under- severe speech and physical impairments achieve stand – for getting involved in something full participation in their communities through that I shouldn’t have been involved in the use of augmentative & alternative means of – well, fuck them. But it hurt me, because communication (AAC) and assistive technology this was for my kid. I know what those (AT) applications” (http://www.bridgeschool. songs are all about, and maybe knowing org). The school’s mission statement is to be a this story, if you listen to ‘Transformer centre for “ongoing programs, projects and ac- Man,’ – you gotta realize, you can’t under- tivities that move all people closer to a life with- stand the words – you can’t understand out barriers to expression and communication” the words – and I can’t understand my (http://www.bridgeschool.org). son’s words. So feel that. For me, even talking about this is very difficult, because The inaugural 1986 benefit show featured, I want my children to be able to hear and among others, Bruce Springsteen, Tom Petty and read what I say and feel loved and know the Heartbreakers, and Young’s own occasional that everything is okay. The thing is, cohorts, Crosby, Stills, and Nash. When plan- it’s communication, but it’s not getting ning the concert’s set-up, Neil and Pegi made through. And that’s what my son is” (Mc- the decision to seat all the children enrolled in Donough, 2003, p. 556-558). the Bridge School on an elevated platform be- hind the stage, directly in the sightlines of both “Transformer Man, Transformer Man / the crowd and the musical performers. This de- Sooner or later you’ll have to see / The cause and cision carried a powerful symbolic resonance: effect / So many things still left to do / But we unlike other benefit concerts, where the actual haven’t made it yet / Every morning when I look recipients of the raised funds are kept carefully in your eyes / I feel electrified / By you” (“Trans- out of sight so as to “not upset” the audience as former Man,” 1982). Ten years after Trans was well as “shield” the recipients themselves, Neil released, Young would perform an effects-free, and Pegi were demonstrating both their pride acoustic version of “Transformer Man” during in the Bridge School children and their faith in the taping of a performance for his MTV Un- the children’s personal and emotional strength. plugged CD, complete with melodic backing fe- Additionally, the Youngs insist that all songs at male vocals. By 1993, it seems, Young felt secure the Bridge School Benefits be performed acous- that enough clear communication was getting tically. Hard-rock bands, then, are forced to re- through between him and Ben for Ben to know interpret their most popular compositions and that he was both loved and respected by his fa- present them within this unfamiliar, stripped- ther. This newfound security allowed Young to down framework. Neil and Pegi’s insistence on perform “Transformer Man” in the naked, direct the acoustic format has caused more than one way he did during the Unplugged taping, and hard-rock band intense performance anxiety it allowed his fans to finally see “Transformer (Marilyn Manson remembers being “scared Man” for what it is: The gentlest love song of shitless” before taking the stage), but even this Young’s career. decision fits in with the Bridge School’s ethos: Just like the children enrolled in the school, mu- In 1986, Neil Young and his wife Pegi host- sicians performing at the benefit are discovering ed the first Bridge School Benefit, a concert held alternative modes of communication they might outside San Francisco to benefit the school they previously have assumed to be ineffective. had recently founded for physically and cog- nitively disabled children, including their son The benefit concerts for the Bridge School Ben. The school itself “is an educational- pro have continued annually, and over the years,

8 major recording artists from diff erent gen- tives alike, but the overwhelming sentiment of erations and across wildly diverse genres have the day was that the kids attending the Bridge performed to support the Bridge School kids. School were not only building full and rich lives A (very small) sample of the artists who have for themselves: they were making a diff erence by played at a Bridge School benefi t includes: Bob embodying diff erence with both individual and Dylan, Th e Grateful Dead, John Lee Hooker, collective pride. Van Halen, R.E.M., Radiohead, Patti Smith, Th e Who, Dave Matthews Band, the Smashing As I ambled off the concert grounds with Pumpkins, Tom Waits, the Foo Fighters, and the strains of Young’s show-ending “Rockin’ in Pearl Jam. Many of the musicians or groups the Free World” still ringing in my ears, I no- have returned to play at the Bridge School Ben- ticed that a booth had one of Young’s CDs on efi t multiple times, leading to close friendships sale. Wandering over, I expected to see copies of between many of the artists and the children en- Harvest, After the Gold Rush, or one of Young’s rolled in the School. In 1999, for example, Pearl other “hit” CDs on sale. When I looked closely, Jam’s Eddie Vedder (whose band has currently though, the disc on sale was Trans. Grinning played the Bridge School Benefi t 7 times) dedi- from ear-to-ear, I bought a copy and headed off cated the last song of Pearl Jam’s set to Maricor, into the warm fall night. a nonoral quadriplegic young woman whom Isaac Stein, M.Ed., is a Doctoral Student in he’d bonded with over the years. Th e reason for Counseling Psychology at the University of the dedication? Maricor had just been accepted Toronto whose doctoral thesis explores the to Berkeley, one of the United States’ top uni- emotional impact of physical disabilities on versities. Four years later, Pearl Jam was back on children and adolescents. He is a disability stage at another Bridge School Benefi t, and Ve- rights advocate and a diehard Neil Young fan. dder once again toasted Maricor before starting the band’s last song of the evening. Th is time, Maricor had just graduated from Berkeley with Source Notes honors. All lyric quotes taken from Neil Young’s Com- In 2006 the Bridge School celebrated its plete Music Volumes I – VI. Published by War- twentieth anniversary, and I was fi nally able to ner Bros/ Reprise Records and Geff en Records, attend the annual concert. I found the atmo- 1966 – 2007. sphere to be precisely as I’d imagined from years “…keep all this weird polio/epilepsy shit qui- of listening to the live bootlegs of past perfor- et…” Neil Young on MuchMusic TV interview, mances. On their platform behind the stage, the 1986. Bridge School kids beamed as musicians turned and serenaded them directly. In between perfor- “…unquenchable determination to destroy mances, spokespeople from the Bridge School your career and take me down with it…” Elliot and some of the children themselves thanked Roberts (Neil Young’s manager) to Dave Ferrin, the audience and updated us on the school’s lat- 6/5/87 British radio interview, Radio-2 FM. est programs and innovations. By the end of the “‘Heart of Gold’ put me in the middle of the night, it was clear that Neil and Pegi’s Bridge road…” From Neil Young’s liner notes to his School benefi t concerts were fundamentally a (fi rst) Greatest Hits album Decade, released in celebration of the courage, ingenuity, and resil- 1977 by Warner Bros/Reprise Records. ience of the children attending the School. Th e struggle and pain of growing up with disabilities in an intolerant society was certainly acknowl- edged by musicians and school representa-

9 v4 i2 “Did I get songs from the [epileptic] seizures? References Probably…” Neil Young to Jimmy McDonough in Shakey: Neil Young’s Biography (pp.176-177). Downing, D. (1994). A dreamer of pictures: Neil Young, the man and his music. “…fear of making it with a girl…” Jack Nitzsche New York: Bloomsbury Publishers. to Jimmy McDonough in Shakey: Neil Young’s Biography (p.278). Einarson, J. (1992). Neil Young: Don’t be denied: The Canadian years. Toronto: “Neil would spend the night with her, but he’d Quarry Press. never take his clothes off…” Donna Port to Jimmy McDonough in Shakey: Neil Young’s Bi- McDonough, J. (2003). Shakey: Neil Young’s ography (p. 188). biography. Toronto: Vintage Canada Press. “…used to hit my [pinched] hand with a spoon…” Zeke Young to Jimmy McDonough Young, N. (1996-2007). Neil Young’s Complete in Shakey: Neil Young’s Biography (pp.472-473). Music Volumes I – VI [CD].Warner Bros/Reprise Records and Geffen “a spastic, quadriplegic, non-oral child…with a Records. big heart and beautiful smile…” Neil Young to Jimmy McDonough in Shakey: Neil Young’s Bi- Young, S. (1984). Neil and me. Toronto: ography (p. 545). McClelland & Stewart Publishing. “I don’t know who was more excited…Neil or Ben.” Harry Sitam to Jimmy McDonough in Shakey: Neil Young’s Biography (p. 544). “I feel we’ve come a long way…” Neil Young to Jimmy McDonough in Shakey: Neil Young’s Biography (p. 548). “Trans is definitely out-there…It went way over everybody’s head…” Neil Young to Jimmy Mc- Donough in Shakey: Neil Young’s Biography (pp. 556-558). “an educational program dedicated to ensur- ing that children with severe speech and physi- cal impairments achieve full participation…” http://www.bridgeschool.org “…scared shitless…” Marilyn Manson to Kurt Loeder, MTV Television interview, 2000.

10 People with Disabilities Get Ready: Curtis Mayfi eld in the 1990s Ray Pence, Ph.D. University of Kansas

Abstract: Th is article breaks with precedent by on his back during the 1990s provide a sort of emphasizing disability’s role in the life and work visual synopsis of public perceptions of his fi - of Curtis Mayfi eld (1942-1999) and by arguing nal years. Mayfi eld crafted the fi rst image with that his experience of quadriplegia had both pos- words when recalling what happened onstage at itive and diffi cult dimensions. Analysis focuses Wingate Park in Brooklyn, New York on August on Mayfi eld’s representation by journalists and 13, 1990, where a near-fatal workplace accident other writers in the 1990s, and on how Mayfi eld paralyzed him from the neck down (Williams, answered their portrayals as an interview subject 2000, pp. 68-69). Struck by a lighting tower and as a musician with his fi nal studio album that fell when the weather turned bad, Mayfi eld New World Order (1996). Considered within could only recall what happened before and af- the whole of Mayfi eld’s career, quadriplegia is ter the mishap. One minute he was preparing revealed as one among many diffi culties that to join his band members, who were playing he answered with critical positive thinking and the introduction to his 1972 smash “Superfl y”; powerful music. the next, he was looking up at the sky as wind tore through the park and rain fell on his body, Key Words: quadriplegia, African-American struggling to stay conscious and fi nding that the music, civil rights impact had taken his guitar from his hands and “When a celebrity is ‘stricken’... his shoes off his feet (Holtzberg, 1996, p. 42; editors and producers of national Williams, 2000). Th e scenes became staples of news organizations fall all over media coverage of Mayfi eld, who confounded each other to run a mass-market many by sharing his story without bitterness. variation on the theme, but in One amazed voice belonged to Sweeting (1997), terms of narrative structure the who thought of the accident as something “that celebrity story is simply the same would have driven many people to despair or notes scored for a symphony even suicide” (p. T12). orchestra rather than a string Th e second image, problematic as it was quartet” (Riley, 2005, p. 13). prominent, illustrates a 1993 Rolling Stone in- terview that undercut its valuable overview of Introduction Mayfi eld’s career by portraying his impairment Curtis Lee Mayfi eld (1942-1999) was a as victimization (Light, 1993). A full-page pic- master of soul, rhythm, and blues with enor- ture of Mayfi eld in bed at his suburban Atlanta, mous and positive cultural infl uence in the last Georgia home, the image’s high angle perspec- forty years of the twentieth century. Mayfi eld tive underscores Mayfi eld’s immobility and the was also a person with disabilities—diabetes photographer/spectator’s fi gurative and literal and, more signifi cantly, quadriplegia—that he power over him. At fi rst glance, Mayfi eld looks acquired late in life. Images are as important like he belongs in a morgue, not a recording as sounds to understanding relationships be- studio, despite his stated intentions of resuming tween Mayfi eld’s quadriplegia and his music. music performance and production. Th ree contrasting views of Mayfi eld lying flat

11 v4 i2 Mayfield remains on his back for the third onset of quadriplegia are better known than image, a composite that replaces pitiable aspects Mayfield’s late career achievements. This essay of the first two images and confirms his histo- seeks to fill that knowledge gap by concentrat- ry of creating opportunities out of challenges. ing on how Mayfield continued making music Various accounts, some by observers and some and why NWO’s songs have continuity with his by Mayfield, create a unified picture of May- pre-1990 work and relevance to his post-1990 field recording vocal tracks while lying on his disability experience. The context encompasses back, at home or in a recording studio, relying biographical and music business factors that en- on gravity to adapt to singing with his damaged hance understanding Mayfield’s adaptation to diaphragm and lungs (Burns, 2003; Fields-Mey- impairment and ableism. er, 1997; Harrington, 1999; Obrecht, 1996). This time-consuming method was crucial to This analysis focuses mostly on major U. S. Mayfield’s final studio album New World Order newspaper articles published during a period (1996) (henceforth NWO), whose title is a met- starting in the second half of 1990 with cover- aphorical, if unintended, evocation of changes age of Mayfield’s accident and ending in early that Mayfield and others with traumatic spinal 2000 with news of Mayfield’s death. It also in- cord injury and paralysis experience (Robillard, cludes reportage from British and Canadian pa- 2006; Schultke, 2006). I explore some of those pers and U. S. magazine articles for general and transformations, which others have restricted to specialized readerships, such as People Weekly the backstage areas of Mayfield’s life. and Guitar Player, and books containing pre- viously published or original commentary on Historical contexts are as vital to this analy- Mayfield. A critical reading approach shaped sis as they were to NWO. To my knowledge, by the social model of disability considers evi- Mayfield gave no public explanation of the re- dence of how Mayfield and his interlocutors cord’s title, probably because he saw no need to represented his life and work before and after elaborate on its dissent from the global vision the onset of disability. Much of the print me- that President George H. W. Bush unveiled in a dia coverage reinforced the common belief that speech delivered on September 11, 1990, soon disability is personal tragedy, especially because after signing the Americans with Disabilities of the severity of Mayfield’s accident and its Act (ADA) into law and several months before consequences. Harmful implications of that launching Operation Desert Storm against Iraq approach are important, but this essay is more (Bush, 1990). In retirement when Mayfield re- concerned with contradictions in the coverage leased NWO, Bush would have been surprised at and with Mayfield’s resistance to portrayal as a the appropriation of his language for very differ- victim. Also offered are alternative readings that ent purposes. Mayfield said his motivation was look at disability as only one of many problems the “concept of peace, love, get it together, and Mayfield faced, and not inevitably more diffi- maybe there’ll be a new world order” (Werner, cult than racism and the vagaries of the music 2004, p. 286). A state of the (dis)union address, business. Too few people truly heard Mayfield NWO spoke to the sociopolitical atmosphere of when he insisted that, “This accident has taught the 1990s as much as “People Get Ready” (1964) me a lot. It’s just another experience. It doesn’t and “If There’s a Hell Below (We’re All Going to mean you don’t wake up with a tear in your in Go)” (1970) captured changes and conflicts in your eyes now and then” (quoted in Charles, their times. 1996, p. 43). Although he was the subject of consider- able media coverage in the 1990s, the artistic and commercial successes that preceded the

12 Career Resurgence and Onset of Some commentators concluded that Mayfi eld Disability had lost his music-making abilities along with his physical mobility (Himes, 1996; Norman, Signs of possible career resurgence for May- 1994). Th ey saw quadriplegia as an end to his fi eld appeared shortly before his 1990 accident career, despite Mayfi eld’s statements to the con- (Mills, 1990). He was emerging from more than trary, and changed the subject to his previous a decade of low-profi le activity and had reason triumphs and his future legacy (Light, 1993; to anticipate a comeback in the 1990s (Gore, Phillips, 1995). When NWO proved that May- 2000). A re-release of the song “Superfl y” as a fi eld was living and working in the present, its single in 1988, collaboration with younger art- release often became a story of overcoming dis- ists including Fishbone and Ice-T, and a return ability instead of another chapter in Mayfi eld’s to fi lm scoring were encouraging developments long story of working hard to make music no (Mills, 1990). Mayfi eld’s choice of “Superfl y” matter what the circumstances (Fields-Meyer, to start what would be his last onstage appear- 1996; Katz, 1997). ance showed he knew his audience well. Th e Wingate Park accident and its life-threatening Much of the post-Wingate Park writing injuries triggered a wave of reverence and con- about Mayfi eld suggested that his positive atti- cern (Burns, 2003, pp. 246-247). Journalists tude about living with quadriplegia was unusual from across and outside the United States in- (Hoekstra, 1993a; Jones, 1996; Th omas, 1991). terviewed Mayfi eld via telephone or in person In fact, his generally high spirits were in char- at his home, where his large family (including acter for Mayfi eld and common among people eleven children from his two marriages) helped with quadriplegia (Gonzalez, 1998; Longmore, him manage a near-total lack of physical mobil- 2003, pp. 178-179). Journalists who expected ity. A host of prominent musicians, but a frac- resentment marveled at Mayfi eld’s acceptance of tion of the many Mayfi eld infl uenced, recorded paralysis, which he expressed with understated cover versions of his songs for tribute albums in melancholy. Variations on the admission that, 1993 and 1994 that also helped the Mayfi elds “Sometimes I can’t help but wake up with a with medical expenses (Murray, 1994a; Smith, tear in my eye” were Mayfi eld’s stock answers to 1993). Th e Rock and Roll Hall of Fame in- questions about his mental state (Charles, 1996; ducted Mayfi eld in 1991 as a founder of Th e Fields-Meyer, 1997; Holtzberg, 1996; Light, Impressions and in 1999 as a solo artist. Unable 1993; Mills, 1992). Putting Wingate Park be- to attend either ceremony in person, Mayfi eld hind him and returning to recording caused thanked the crowd for his fi rst induction via some writers to react with combined admiration satellite television and relished its standing ova- and incredulity. Commenting on perceptions tions (Mills, 1991). of the careers of Ray Charles, Stevie Wonder, and Hank Williams, Barnes and Mercer (2001) Th e attention occasionally had a frenetic note that in some instances, “sickness or im- edge, with admirers seeming desperate to give pairment is credited with adding to the appeal Mayfi eld his due before he died. Th is context or the insight of the artist” (p. 518). Th e way intensifi ed the already negative perceptions of in which Mayfi eld acquired disability and the his disability, which was hard to separate from magnitude of his physical problems excluded its harrowing onset. Even if Mayfi eld had him from such consideration. Instead, media been paralyzed in a less traumatic way, observ- observers suggested that Mayfi eld’s quadriplegia ers would probably have defi ned quadriplegia was the worst of a series of problems he faced as something he did not deserve—a bad thing in his life and a potentially insurmountable ob- that happened to a good person whose humil- stacle. Th eir responses overlooked precedents ity was rare in the music industry (Mills, 1992). for Mayfi eld’s resilience, even though biographi-

13 v4 i2 cal information suggested that his adaptation to “This way when I strummed across it, it gave me disability was unsurprising, if not predictable. a chord. That’s how I learned to play my guitar, and that’s the way I tuned it all the way up to Early Years my accident.” Mayfield learned to solve problems and cre- His attraction to the piano’s black keys and ate opportunities through self-determination his uncommon guitar tunings marked a confi- and critical distance early in life and never lost dent but never arrogant path that Mayfield took that ability. Born in Chicago, Illinois in 1942, to professional success. If the intimate relation- Mayfield was the oldest of five siblings includ- ship between Mayfield and his guitar was eccen- ing a brother, Kirby, who had mental retarda- tric, he balanced it with pragmatism about his tion and died young (Burns, 2003; DeCurtis, marketplace relationship with his songs. The 1999). Raised fatherless in a family that was Library of Congress heard from Mayfield be- often on welfare, with firm guidance from ma- fore the rest of the world did. As a teenager, he ternal grandmother Annabell “A. B.” Mayfield sought information on copywriting songs from and mother Marion Mayfield, Curtis developed that source and was decisive in using what he strategies for survival in a city that represents both learned (Gonzalez, 1998). Claiming ownership optimism and oppression for African-Ameri- of his work was notable not only for Mayfield’s cans (Werner, 2004). Reverend A. B. Mayfield’s youth, but also because he avoided the exploita- storefront preaching and folk medicine practice tion that plagued many African-American musi- made her an assertive role model. Marion May- cians (Gonzalez, 1998; Murray, 1994b; Werner, field sang, played piano, and cultivated appre- 2004). ciation of poetry in Curtis, who started writing songs in his teens (Hoekstra, 1993b). Toward Although praise for his business acumen was the end of his life, Mayfield called his composi- not unanimous (Himes, 1996), Mayfield had a tion skills “natural,” but he was indebted to his record of discipline and persistence that served mother and grandmother (Obrecht, 1996, p. him well, particularly during the 1990s (Mills, 29; Smith, 1993). Unrestrained by social de- 1992). Royalties from his many hits, which valuation, these strong women prepared May- surged in the 1980s and 1990s because of hip- field for a lifetime of challenges (Brown, 1997; hop sampling, helped Mayfield avoid financial Burns, 2003; Smith, 1993; Werner, 2004; Wil- burdens that usually accompany paralysis (Rob- liams, 2000). illard, 2006; Werner, 2004). The comfortable, but not lavish material circumstances that May- Church and family provided Mayfield’s field earned for himself and his family contrib- childhood immersion in music. Adolescence uted to his optimism, which he acknowledged in Chicago’s notorious Cabrini-Green housing in interviews (Light, 1993). Mayfield also tem- project provided a musical apprenticeship (Light, pered his appreciation for rap-generated royal- 1993; Werner, 2004). Mayfield had precocious, ties with ambivalence about the music’s mes- unconventional interests in guitar and piano sages and messengers (Werner, 2004). that put him outside the norms of playing those instruments. Comfortable with his idiosyncra- Civil Rights Movement sies, Mayfield learned to make what was odd to others a source of strength (Williams, 2000). “I Mayfield’s characteristic balance of belong- used to play boogie-woogie on the piano, and ing to and maintaining distance from commu- not ever having had lessons I subconsciously re- nities was evident during the African-American tuned the guitar to the key of F#,” remembered civil rights movement, which coincided with Mayfield in a 1996 interview (Obrecht, p. 30). his tenure as a member of The Impressions,

14 the ensemble he helped found in 1957 and led (with qualifi cation) Louis Farrakhan’s polarizing until 1970, the fi rst of his solo years (Garofalo, leadership (Siebert, 1996). 1992; Ward, 1998; Werner, 2004). His writ- ing, singing, and playing put the group’s records Th e early 1970s are often considered a time on “every movement turntable” (Ward, 1998, of disillusionment for the millions of U. S. citi- p. 299), an honored place that Martin Luther zens who believed in the African-American civil King, Jr. confi rmed with appreciation for 1964’s rights movement. Music by Marvin Gaye, Sly “Keep on Pushing” (Harrington, 1999). Nelson and the Family Stone, Stevie Wonder, and May- George spoke for many when he called May- fi eld acknowledged that period’s setbacks with fi eld “black music’s most unfl agging civil rights no loss of resolve. Mayfi eld’s Superfl y soundtrack champion” (quoted in Th omas, 1991, p. 1). But (1972) was the most arresting demonstration Mayfi eld was modest about his achievements of his critical distance, a career watershed that and resistant to being identifi ed with activism. ensured Mayfi eld’s reputation for decades after Stressing the collective nature of rhythm and the controversial movie’s release. Uncomfort- blues and soul in the 1960s, Mayfi eld counted able with the fi lm’s tone after watching a rough himself among Smokey Robinson, the Tempta- cut, Mayfi eld took a skeptical stance that kept tions, Aretha Franklin, Otis Redding, Gladys Superfl y’s score from celebrating gangsterism and Knight, and James Brown as a barrier breaker prevents the movie from seeming as dated as for future African-American musicians (Garofa- other “blaxploitation” eff orts (Mitchell, 2000). lo, 1992). At the same time, Mayfi eld followed Th e fi lm also featured a cameo by Mayfi eld that a personal agenda that he separated from poli- prompted Gonzalez (1998) to compare May- tics (Mills, 1992; Obrecht, 1996; Ward, 1998). fi eld to a “geek” (p. 232). Mayfi eld’s anomalous Calling himself an entertainer who educated image embodies his detachment from values he and a “painless” preacher, Mayfi eld drew a line opposed in Superfl y and foreshadows his future between art and politics that was dubious in re- estrangement from an ableist music business that spect to his own work as well as to music that prefers “artists [who are] exceptionally physically was less socially engaged (Ward, 1998, p. 414). attractive by normate standards” (Lubet, 2006, p. 1121-1122) and where “prominent fi gures Scholars, journalists and music critics tend with visible disabilities are virtually unknown.” to be more certain of Mayfi eld’s movement credentials than he was (Mengel, 1996; Smith, In the 1980s, hip-hop artists began sam- 1993; Werner, 2004). Ambivalence worked to pling Superfl y and other Mayfi eld music to en- his advantage in music that refl ected and fos- hance their work’s credibility. Although he had tered change while eschewing an ideological reason to be proud of Superfl y’s resonance when conformism that marked some elements of the he stepped onstage in Brooklyn in August 1990, post-1965 movement (Ward, 1998, p. 414). Mayfi eld was concerned simply with pleasing an Mayfi eld fought in the civil rights struggle on audience that had come to see and hear him as his own terms, saw no confl ict in endorsing both the headlining act. No matter that the terms King and Malcolm X, and challenged the no- of Mayfi eld’s contract guaranteed him payment tion that the movement began and ended with if the weather prevented him from performing the 1960s (Smith, 1993; Werner, 2004). Th e (Mills, 1992). For Mayfi eld, commitment to Million Man March took place in Washington, his fans was essential to music as a way of mak- D.C. in late 1995, just as Mayfi eld was starting ing a living and a way of life. work on NWO. Mayfi eld recognized the con- vergence by contributing the album’s title song to Get on the Bus, director Spike Lee’s cinematic commemoration of the march, and by praising

15 v4 i2 Media Portrayal After Wingate Park microphones and amplifiers, Mayfield credited that equipment with making him a successful Journalistic coverage of Mayfield after performer despite his vocal limitations (Light, Wingate Park combined elements of an antici- 1993, p. 63). pated comeback story with an unanticipated deathwatch. Media interest would have been The homogeneity and predictability of main- significant had a temporarily able-bodied (that stream commercial journalism have particularly is, “non-disabled”) Mayfield enjoyed a career re- negative implications for coverage of people vival in the 1990s, but quadriplegia raised atten- with collective histories of social disadvantage tion to a level he had not known since Superfly (Riley, 2005). Mayfield’s media portrayals are (Harrington, 1999). In some respects, the cov- tied to devaluation and stereotyping of people erage exemplified Thomas Couser’s idea of “hy- with disabilities and should be answered with per-representation” that “subjects people with critical media literacy, which Bell Hooks (1996) disabilities to objectifying notice in the form and Irving K. Zola (1985) identify as a strategy of mediated staring” (2006, p. 399). However, for social change. When informed by the social there was a stronger tendency among writers to model of disability, media literacy can dismantle look into Mayfield’s past and away from his dis- the tragic frames that journalists put around ability. Lengthy career retrospectives were com- Mayfield and similar individuals and groups. mon in articles about Mayfield in the 1990s and Contexts that acknowledged disability rights were valuable for what they taught readers (par- and culture would have situated Mayfield with- ticularly younger readers) about his significance. in communities of people with quadriplegia and At the same time, a predominantly tragic tone generated more accurate stories. Along with made the information read like obituary copy. credibility, originality is a factor that requires re- In a review of several Mayfield re-releases and considerations of language and style in disability compilations, Himes (1996) wrote about May- reportage. Riley (2005) notes that “avoidance field and his career exclusively in the past tense. of stock phrases and clich_s is a point of profes- Uninformed readers would have been justified sional pride among the better class of journal- in assuming that Mayfield had already died. ists” and not just a concession to what “curmud- geons” call “political correctness” (pp. 51-52). Mayfield’s role as an interviewee proved he The sources for this analysis had room for such was very much alive and able to deflect the sen- perspectives without sacrificing wide audience timentality journalists aimed at him. His com- appeal, but few writers made even minimal ef- ments were a “reality check” that refuted the fort to explore the relevance of Mayfield’s dis- pessimism in many articles. An excerpt from ability experience to the 1990s, a crucial decade the Rolling Stone interview reveals that the facts for disability rights, culture, and studies. of Mayfield’s life were incompatible with the pity the photograph encouraged. “I live for the Comparing Mayfield’s circumstances with music,” said Mayfield. “There probably have those of the majority of “dependent paralyzed been four or five songs introduced just based people” (Robillard, 2006, p. 1198) illustrates on our conversation. Hopefully, with the voice some differences that disability awareness would activators and different things that are coming have made in the coverage. In several stories, out... I can be as independent as possible [and] Mayfield noted that he was fortunate in material contribute once again in this business” (quoted terms (Bauder, 1994; Murray, 1994b; Norman, in Light, 1993, p. 66). In the same interview, 1994; Selvin, 1994). Unlike Mayfield, most Mayfield revealed, albeit unintentionally, that people with quadriplegia lose their jobs and assistive technology was vital to his career long medical insurance and face pressure “to sell their before he acquired disability. Thanking God for homes and draw down their financial assets”

16 (Robillard, 2006, p. 1198). Such facts need not action against Markowitz’s insurance company have prevented journalists from showing the (Mills, 1992). specifi city of Mayfi eld’s experience of paralysis. Moreover, Mayfi eld almost certainly would have However, media attention to the controver- welcomed the broader context, given his critical sy was muted. Mayfi eld would not discuss it, consciousness of economic inequalities in the U. the lawsuit was settled out of court, and a some- S (Werner, 2004). what defensive Markowitz insisted that “we all feel terrible” about the accident, which was an Th e unusual circumstances of Mayfi eld’s ac- “act of God” (Mills, 1992, p. G1). In Atlanta quisition of disability also set him apart from when his father was injured, Todd Mayfi eld felt many people with quadriplegia. Causes of spi- guilty about missing his chance to talk Curtis nal cord injury, from most to least frequently re- out of going onstage (Mills, 1992, p. G1). Even ported, include motor vehicle crashes (46.9%), if journalists had been more willing to investi- falls (23.7%), violence (13.7%), sports injuries gate the accountability of Markowitz and Todd (8.7%), and other/unknown (7%) (National Mayfi eld, the major problem was their reliance Spinal Cord Injury Statistical Center, 2006, p. on clichéd language and tragic storylines that 1). Although the Wingate Park accident had mystifi ed the incident and trivialized concerns a violent impact on Mayfi eld’s body, his injury for the safety of performers and audiences. fi t the other/unknown category rather than the violence category, which refers to willful acts of A more complex, affi rmative perspective on violence and often to gunshot wounds (Nation- disability in coverage of Mayfi eld would have al Spinal Cord Injury Statistical Center, 2006, worked against what Paul K. Longmore (2003) p. 1). A study by Devlieger, Albrecht, and Hertz calls “the context of a health care system and a (2007) shows the disproportionate impact of society pervaded with prejudice and discrimina- such incidents on young African-American tion against people with disabilities” (p. 178). men. Th eir ethnographic research study took Surveys show discrepancies between physicians’ place in rehabilitation hospitals in Chicago, negative assumptions about quality of life with where African-American men developed their paralysis and the positive outlooks that people own disability cultures and described their lives with quadriplegia have (Longmore, p. 178). before and after paralysis in personal narratives Fictional characters whose paralysis made them that had much in common with stories May- want to end their lives had considerable cultural fi eld told in his songs. capital, represented notably by the protagonist of stage and screen versions of Whose Life is it When discussing the Wingate Park accident, Anyway? (Longmore, 2003, pp. 119-122). Fur- journalists turned an undeniably traumatic in- thermore, despite the ADA and the momen- cident that also injured several concertgoers, tum of disability studies in the 1990s, Dr. Jack including children, into melodramatic tragedy. Kevorkian’s campaigns for assisted suicide and In reality, this was a workplace accident whose against the survival of many people with dis- magnitude should have been conveyed through abilities received more media attention and sup- careful contextualization. A few reporters ad- port from the general public (Longmore, 2003, dressed the possibility that Mayfi eld’s mishap pp. 175-203). In this atmosphere, Mayfi eld’s was avoidable. Questions about the stage area’s resources of family, fi nance, and optimism were safety prompted a New York City labor union indeed precious. representative to challenge promoter and former New York state senator Martin Markowitz in the Only one text featuring Mayfi eld with quad- press (Paulucci, 1996) and led Todd Mayfi eld riplegia and published during his life diverged (Curtis’s manager and oldest son) to take legal signifi cantly from normative disability report-

17 v4 i2 age. Portrait of a Spirit: One Story at a Time, Mayfield’s Career After Wingate a Canadian book profiling twenty-five U. S. citizens with disabilities who narrate their ex- Mayfield’s will to resume work was stron- periences in interviews, looks somewhat like a ger than doubts he sometimes expressed. Some coffee-table book but is solidly within the social journalists were flatly pessimistic about the model of disability (Holtzberg, 1996). Many of prospect of more Mayfield music in the 1990s, the interviewees, including Mayfield, resided in an outlook that Phillips (1995) expressed in an Georgia and had ties to Atlanta, which was host- article blending career appreciation and career ing the Summer Olympics and Paralympics in autopsy. Mayfield responded with NWO, aston- 1996. Several Paralympians appear in Portrait, ishing writers who called the accomplishment one of the most diverse disability-based texts “inspirational,” “miraculous,” and “amazing” in its attention to impairments, age, class, eth- (Obrecht, 1996, p. 29; Siebert, 1996, p. C8; nicity, gender, race, and occupation. Mayfield Sweeting, 1997, p. T12). But the hard work posed for his black and white portrait at home that went into NWO was no more mysterious and in his wheelchair (Holtzberg, 1996, p. 40). than the Wingate Park accident was tragic, and The image’s somber silhouette conveys a sense no more remarkable than his self-determination of Mayfield’s difficulties without rendering him during the African-American civil rights move- helpless, as the 1993 Rolling Stone photograph ment. True, Mayfield made demanding adjust- did. ments and struggled with the loss of his guitar- playing abilities and an intimate relationship Christopher Reeve, whose spinal cord injury with the instrument itself, which he described occurred one year prior to Portrait’s publication, as “part of his body,” “another person,” and “a contributed a foreword to the book but was not brother” (Fields-Meyer 1997; Obrecht 1996). interviewed or photographed. For many disabil- Writing songs with the help of a voice-activated ity rights activists, any role for Reeve would have computer was a tough transition from reliance been objectionable. However, Portrait’s context on paper, pen, and keyboards. Of all the new makes Reeve’s presence seem a concession to techniques, Mayfield’s need to lie down while marketability. The musical force behindSuperfly singing was the most publicized. He required and his cohort, in which “average” people with frequent rest breaks during sessions, but NWO disabilities outnumber better-known figures like showcases the beauty of his voice and connects former U. S. Senator Max Cleland and disability with Mayfield’s pre-1990 work, even when the rights advocate Mark Johnson, overshadow the record’s production is too glossy. erstwhile Superman. Even though Mayfield’s interview repeats information he gave journal- NWO begins with its title song, which ists in previous accounts, his chance to address shows that the album’s best music relies more the reader in a more direct manner highlights his on understatement than overproduction. A agency, as does the editor’s note about NWO’s slow pulse tempo and stop-frame lyrics enhance release (Holtzberg, 1996, p. 41). The difference Mayfield’s observation of an infant’s emergence that a positive context makes is hard to overstate. into a world of privation and victimization. In Portrait brings Mayfield into a community and the second line, Mayfield alludes to his pains- preserves his individuality. With acknowledg- taking singing process: ment of disability rights and culture and respect Darkness no longer, a child is born for leaders like Judy Heumann and Irving K. Zola, Portrait maintains progressive integrity Mother shed tears of joy as baby test his while reaching out to a general audience, just as lungs Mayfield did with his songs. My daddy’s not there, where he ought to be

18 Somewhere in Georgia skinning and cal and psychological dislocation associated shooting craps on his knees with quadriplegia (Robillard, 1996; Robillard, Another victim born out here in the hood 2006). Instead, Mayfi eld uses the persona of a substance abuser (who could be Ms. Martha’s And based on statistics it really ain’t all son) to convey the experience of self-imposed that good immobility that entails immaturity and vulner- Welfare takes the tab and daddy can’t sign ability. Mayfi eld’s narrator explains that he is, And can’t be seen, the family becomes a “Porched up in a rocking-chair / With my feet crime all bare / Rolling my blunt in a cigar wrap... Live an adolescent mind / Waiting for my high, quiet Th e hunt is on and brother you’re the as it’s kept / ... Around the boys I play my part prey rough / Keep myself tough enough / Never to Th e empathy that made Mayfi eld a singular cry / Don’t really want to die.” Speaking more songwriter is as strong as ever. Living at home than singing, Mayfi eld uses hushed tones to with quadriplegia took nothing away from his render the resignation of this character and the social awareness. Metaphorically, Mayfi eld is force of his bleak tale. the “baby test[ing] his lungs,” a veteran vocal- ist with an impaired diaphragm relearning his A remake of Mayfi eld’s 1970 solo song craft. His voice is also that of the mother, absent “We People who are Darker than Blue” is at father, and hunted brother. Moreover, the in- NWO’s center to warn listeners against living formed listener knows that Mayfi eld sings from up to oppressive defi nitions that are part of a experience when referencing the stigma of wel- victim-blaming, culture of poverty ideology. fare. Reiterating the original version’s call for multi- racial solidarity in a political context shaped by Mayfi eld often said he wrote songs mainly a Republican Congress’s Contract with America for himself (Mills, 1992; Obrecht, 1996), but and a Democratic President’s draconian welfare there is no self-absorption in NWO. Several reform, “Darker than Blue” champions interde- songs, such as “Ms. Martha,” are stories in pendence, a value whose personal signifi cance which Mayfi eld observes or inhabits characters for Mayfi eld equaled its social urgency. and displays his descriptive skills. Mayfi eld ad- mires how Ms. Martha watches over her urban When Mayfi eld ventures into what seems surroundings from her porch. She endures, unquestionably personal, even private territory even while witnessing eff ects of pervasive crime on “I Believe in You,” a duet with Sandra St. Vic- on her surroundings and her son. Longtime tor, the fact of his quadriplegia makes the song’s peer and friend Mavis Staples, an ideal artist to romantic and sexual subject matter socially reso- help deliver positive messages about African- nant. St. Victor assures Mayfi eld that “You’re American women, is Mayfi eld’s singing partner my kind of man, with a mind completely rare on “Ms. Martha.” Her high opinion of May- / We feel the touch, ‘cause we know each other fi eld matched Mayfi eld’s respect for Ms. Martha care / Th e time is now, so we try ourselves for (Mills, 1992). Staples may have been the only size / Your smiling face, bring a sparkle to your person who envisioned Mayfi eld returning to eye / So sensitive we give / It’s your ecstasy, now the concert circuit. If Prince could bring a bed caressing me, with our feelings free.” One of onstage for his act, she reasoned, why couldn’t several songs of intimate love on N.W.O., “I Be- Mayfi eld? (Werner, 2004, p. 286). lieve in You” is a necessary reminder that people with disabilities are sexual agents regardless of Th e title of the fi rst-person “Here but I’m the severity of their impairments. Gone” implies Mayfi eld will narrate the physi-

19 v4 i2 The most musically buoyant song on NWO the more positive, complicated, and surprising also has its most trenchant lyrics. Deceptively readings that the stories of all people with dis- danceable, “The Got Dang Song” sends the kind abilities deserve. of message that made Mayfield a role model for Ray Pence Bob Marley and other reggae musicians who lectures in the American Studies heard revolutionary spirit in Mayfield’s work program at the University of Kansas, where he with the Impressions and as a solo act (Burns, earned his Ph.D. in 2005. His work has ap- 2003). Surveying a planet rife with class and peared in American Quarterly, American Stud- race-based iniquities, Mayfield contrasts the ies, and in several reference works including the physical beauty of developing countries with forthcoming Encyclopedia of American Disability their harsh economic straits, delineates the History (New York: Facts on File, 2008). He struggles of people denied living wages, and contributed a chapter to The Teacher’s Body: Em- paints a vivid picture of urban mayhem. The bodiment, Authority, and Identity in the Academy closing verses of “Got Dang” express a bitterness (Albany: State University of New York Press, Mayfield never voiced in his interviews: 2003). Pence’s main research interests are re- habilitation psychology, vocational rehabilita- Saw him from the shadow when he shot tion in the United States, and disability in the the gun Vietnam War. Through the ghetto jungle away he run References Live in the city, ain’t going nowhere Few folks share and ain’t nothing fair Barnes, C., & Mercer, G. (2001). Disability culture: Assimilation or inclusion? In Oh could there be a conspiracy G. L. Albrecht, K. D. Seelman, & M. To thrive on me, a minority Bury (Eds.), Handbook of disability Some folk say to suck it up studies (pp. 515-534). Thousand Oaks, CA: Sage Publications. Ain’t got no straw, ain’t got no cup These six songs are the most compelling Bauder, D. (1994, March 17). Curtis music on an album that sometimes provides a contributes. Toronto Sun, p. 72. merely pleasant listening experience, with ques- Brown, G. (1997, January 20). Got to find a tionable production values and a large cast of way. Independent, p. 4. collaborators who occasionally overwhelm May- field. Despite its unevenness, NWO ended May- Burns, P. (2003). Curtis Mayfield: People never field’s recording career on a positive note. Burns give up. London: Sanctuary Publishing. (2003), an admiring chronicler of the Mayfield legacy, proves that respect does not foster insight Bush, G. H. W. (1990). Address before a when he observes that “once you begin to get joint session of the Congress on the over the miracle that Curtis ever managed to Persian Gulf crisis and the federal record [NWO], it is only then that you begin budget deficit. 11 September 1990. The to appreciate [NWO] without any further refer- museum at the George Bush Presidential ence to such consideration” (p. 234). I argue library. Retrieved July 27, 2007, from for and from an opposing viewpoint, not just http://bushlibrary.tamu.edu/research/ in respect to Mayfield and his music, but also papers/1990/90091101.html to the spectrum of individual experiences and Charles, N. (1996, October 1). Mayfield’s social constructions that disability studies inter- lasting impression. New York Daily rogates. Disregarding disability is a barrier to News, p. 43.

20 Couser, G. T. (2006). Disability, life narrative, Holtzberg, M. (1996). Portrait of spirit: One and representation. In L. J. Davis (Ed.), story at a time. Oakville, Ontario: Th e disability studies reader (2nd ed.) Disability Today Publishing Group. (pp. 399-401). New York: Routledge. Hooks, B. (1996). Reel to real: Race, sex and DeCurtis, A. (2000, February 3). Th e soul class at the movies. London: Routledge. of soul: Curtis Mayfi eld 1942-1999. Rolling Stone, 50-52. Jones, S. (1996, October 1). Mayfi eld’s mettle: Paralyzed singer keeps on pushing. USA Devlieger, P. J., Albrecht, G. L., & Hertz, M. Today, p. 1D. (2007). Th e production of disability culture among young African-American Katz, L. (1994, March 27). Lasting men. Social Science & Medicine, 64, impressions. Boston Herald, p. 39. 1948-1959. Katz, L. (1997, March 16). Mayfi eld comeback Fields-Meyer, T. (1997, February 17). Curtis album a triumph. Toronto Sun, p. S15. Mayfi eld hasn’t let paralysis stop him Light, A. (1993, October 28). A lasting from making music. People Weekly, 47, impression: Th e Rolling Stone 111-112. interview with Curtis Mayfi eld. Rolling Garafolo, R. (1992). Rockin’ the boat: Mass Stone (668), 62-66. music and mass movements. Boston: Lubet, A. J. (2006). Music. In G. Albrecht South End Press. (Ed.), Encyclopedia of disability (Vol. 3) Gonzalez, M. (1998). Th e legend of soul: Long (pp. 1121-1123). Th ousand Oaks, CA: live Curtis Mayfi eld! In M. Guillory & Sage. R. C. Green (Eds.), Soul: Black power, Mayfi eld, C. (1996). New world order. New politics, and pleasure (pp. 227-235). York: Warner Brothers. New York: New York University Press. Mengel, N. (1996, August 5). Black music Gore, J. (2000, April). Curtis Mayfi eld, 1942- man’s powerful message. Queensland 1999. Guitar Player, 34, 35-36. Courier-Mail. Harrington, R. (1999, December 28). Th e heart Mills, D. (1990, September 23). Curtis of soul: Curtis Mayfi eld put a movement Mayfi eld, back with a “Superfl y” sound. to music. Washington Post, p. 1. Washington Post, p. G8. Himes, G. (1996, May 1). Curtis Mayfi eld: Art Mills, D. (1992, August 2). Curtis Mayfi eld, & soul. Washington Post, p. C7. pushing on. Washington Post, p. G1. Hoekstra, D. (1993a, March 14). A lasting Mitchell, E. (2000, September). Urban legends. impression on music. Chicago Sun- Esquire, 134, 126-128. Times, p. 6. Murray, S. (1994a, February 22). Musician Hoekstra, D. (1993b, March 14). Curtis revels in renewed attention. Atlanta Mayfi eld keeps on pushin.’ Chicago Journal and Constitution, p. E9. Sun-Times, p. 1. Murray, S. (1994b, February 22). Th e lasting impressions of Curtis Mayfi eld. Atlanta Constitution and Journal, p. E1.

21 v4 i2 National Spinal Cord Injury Statistical Center. Siebert, T. W. (1996, November 18). Curtis (2006, June). Spinal cord injury: Facts Mayfield: New world order: Unique and figures at a glance. University of voice and sound return after 6-year Alabama at Birmingham. Retrieved hiatus. Washington Times, p. 1. June 5, 2007, from http://images.main. uab.edu/spinalcord/pdffiles/Facts06.pdf Smith, P. (1993, March 18). Soul survivor: Paralysis hasn’t silenced Curtis Norman, M. (1994, February 19). Paralyzed Mayfield. Boston Globe, p. 47. Mayfield is hoping technology reopens music doors. Cleveland Plain Dealer, p. Sweeting, A. (1997, January 17). People get 1E. ready. Guardian, p. T12. Obrecht, J. (1996, December). Curtis Thomas, D. (1991, January 27). The survival Mayfield: The messenger returns. struggle of Curtis Mayfield. Atlanta Guitar Player, 30, 29-31. Journal and Constitution, p. N1. Paulucci, T. (1996, August 11). Marty Ward, B. (1998). Just my soul responding: Markowitz: Senator, or social director? Rhythm and blues, black consciousness, [Letter to the editor]. New York Times, and race relations. Berkeley: University p. CY 11. of California Press. Phillips, C. (1995, March 11). A tribute to a Werner, C. (2004). Higher ground: Stevie silent prophet. Guardian, p. 28. Wonder, Aretha Franklin, Curtis Mayfield, and the rise and fall of Riley II, C. A. (2005). Disability and the media: American soul. New York: Crown Prescriptions for change. Hanover, NH: Publishers. University Press of New England. Williams, R. (2000). Long-distance call: Robillard, A. B. (1999). Meaning of a disability: Writings on music. London: Aurum The lived experience of paralysis. Press. Philadelphia: Temple University Press. Zola, I. K. (1985). Depictions of disability-- Robillard, A. B. (2006). Paralysis. In G. Metaphor, message, and medium in the Albrecht (Ed.), Encyclopedia of media: A research and political agenda. Disability (Vol. 3) (pp. 1197-1201). Social Science Journal, 22(4), 5-17. Thousand Oaks, CA: Sage. Schultke, E. (2006). Spinal cord injury. In G. Albrecht (Ed.), Encyclopedia of Disability (Vol. 4) (pp. 1495-1497). Thousand Oaks, CA: Sage. Selvin, J. (1994, February 20). New collaborative album tribute to a seminal songwriter. San Francisco Chronicle, p. 33.

22 “Hear Us Shout:” Music Celebrating Disability Pride and Liberation Steven E. Brown, Ph.D. Center on Disability Studies University of Hawai‘i

Abstract: An exploration of a sampling of music Push breath through the street about disability issues, primarily from musicians Roll forward and on with disabilities. Th e focus of the music dis- cussed in this article is protest, power, oppres- Th e beat in a circle sion, and resilience. References and websites We move, we move for the musicians discussed are included when Th e line held fi rm available. Th e song lifting Key Words: Disability rights, Disability Cul- (Petra Kuppers, 2007) ture, music I use poetry about music and dancing to Crip Music bookend this essay because music cannot be played in this format. I hope to convey, through A beat behind, sycophant, you these two poems, the feelings of music that at- Sisyphus, roll and run tract me to that art form. again and again I came of age in the US Midwest in the Sybil whistle tune, mournfully 1960s. At that time, many political, social, and cultural movements captured the public’s (and Whistle in the dark my) imagination: Berkeley, California became Th e shoe steps the rhythm the home of the Free Speech movement (which

(Beyond) Popular Culture (Beyond) Popular Behind, behind, behind you spawned many more activist movements in the San Francisco Bay Area); in the southern states, With the crutch cane stick beat the civil rights movement; from various locales, Th e cripple who ripples across the women’s movement and the anti-Vietnam Th e street with the wheel on the rack War movement. I identifi ed with all these re- form-minded activities. Popular music both re- Rackle and giggle the cripple fl ected and stimulated aspects of these various Till the music stops protest movements. During the 1960s, there We step out were a bevy of antiwar songs. Perhaps the most radical was Country Joe McDonald and the And then, and then, it builds Fish’s Th e Feel Like I’m Fixin’ to Die Rag (1965): Th e sound, and the beat So put down your books and pick up a And the melody of the cane gun And the melody of the crutch We’re gonna have a whole lot of fun! And the melody of the wheel And it’s one, two, three what are we fi ght- And the tap of the stick ing for? And the tick of ventilators Don’t ask me, I don’t give a damn Dilate, pulse Next stop is Vietnam

23 v4 i2 While I identified with all of these reform ling that those who do not have a disability will movements of the late 1960s and early 1970s, I surely want to acquire one. This song collection did not yet identify myself as an individual with also includes “Quickie’s Goodbye,” a tribute to a disability. But in the early 1980s when I be- a loyal wheelchair; a love song, “One Flight of came a part of the disability rights movement, Stairs;” and a classic anthem to our sexuality, I sought various cultural representations of my “Disabled People Do It!” another presentation new movement home, including music. I still favorite. do. The nondisabled human service profession- When I think of a disability rights song, the al, Peter Leidy has recorded three CDs about first criteria is that the content of the song has “human serviceland.” On The Great Escape, sev- something to do with the experience of disabil- eral songs describe survivors and escapees from ity. Frequently, but not always, that content is institutions. In folk style, Leidy sings the “Dar- generated by someone with a disability. Some- win Ness Polka” about a man who finally gets times an individual with a disability creates mu- out of an institution after “47 years staring at sic that may not initially seem disability-related, the same walls.” When Leidy sings about Dar- yet nonetheless relates, however subtly, to the win Ness he’s now “been out 20 years and there’s musician’s disability experience. There are also no time to rest.” The Great Escape’s title song, musicians with disabilities who seem to have tells the story of “Charlie [who] was locked up little to do with the disability rights movement, there at the age of 9, having been found guilty at least in their music. of committing no crime.” At the age of 23, in 1967, “Charlie ran away, he traveled night and This is a survey of music I know, not com- day… he took a holiday,” and in what might prehensive and primarily limited to English seem to be a classic understatement, Leidy sings language lyrics. It constitutes but a sampler of “he’s gone and he won’t be coming back,” be- music that celebrates disability pride and libera- cause Charlie realizes “at least I know I’m free, tion. may no one ever take that from me.” “The Bal- I am compelled to begin with Jane Field be- lad of Self-Directed Joe,” sung in the style of the cause I have used her music for many years in “The Ballad of Jed Clampett” (Henning, 1962; presentations. In 1994 Field released The Fishing also known as the Beverly Hillbillies theme song) is Free, a classic song collection. The first two narrates the tale of a bureaucratic mistake that lines below are the title song’s refrain: has made Joe rich. Leidy sings about “choice, control, dignity” and says that though the state Don’t you wish that you were disabled? sought Joe “he was last seen lying on a beach Disabled is the better way to be. in Mexico.” Finally, the all-encompassing In- clusion states unequivocally “we all belong” and When we go out it’s really neat, everyone should pay attention because we are we’re always sure we’ll get a seat “all invited to come along.” Emulating earlier Oh, don’t you wish that you were just like civil rights songs, Leidy intones the disability me? rights emphasis that “inclusion is about change and change will come.” In case the listener has Field utilizes humor to describe various dis- not figured it out yet Leidy explains, “all means ability life experiences, including going through all” and “together we’re better, together we’re the back doors of buildings to get inside, and strong.” not having to pay for a fishing license. The trade-offs are clear in the refrain. The breaks Perhaps, the two best-known singer-song- one gets from becoming disabled are so compel- writers who focus on disability in their music

24 are Jeff Moyer and Johnny Crescendo. Moyer, But til that time this sentence stands, who is blind, lives in Ohio. He fi rst gained no- the State’s will shall be done. tice in the late 1970s as the resident musician of the 1977 sit-in at the San Francisco Federal Building. Until recently, this was the largest For the crime of being diff erent, take-over of a US government building in US for the crime of being slow history. Demonstrators demanded the govern- For the crime of not quite fi tting in, ment implement regulations to enforce a law known as “Section 504,” that is widely viewed we sentence you to go as the fi rst US law protecting the rights of in- Where you will be with others dividuals with disabilities (Brown, 1994, p. 61, who are also of your kind DREDF, 1999). I often play Moyer’s song, “For the Crime of Being Diff erent” which focuses on Far, far away from city lights, his brother who was institutionalized because of out of sight and out of mind. a developmental disability: © Jeff Moyer 1986, Used with author For the crime of being diff erent, permission for the crime of being slow Originally from England, Johnny Crescen- do now makes his home in Philadelphia, Penn- For the crime of not quite fi tting in, sylvania. A founder of DAN, the Direct Action we sentence you to go Network, modeled on the US street activist Where you will be with others group ADAPT1 , that focused fi rst on accessible transportation, and now works to get people who are also of your kind out of nursing homes and other institutions, of Far, far away from city lights, the US, Johnny’s songs relate tales of disability out of sight and out of mind. pride, protest, and rights. (http://www.johnny- crescendo.com/page6.html). His song, “Not Dead Yet” protests physician-assisted suicide: Th e sentence is quite fi nal, there can be no appeal I’m lying at the gates of heaven I’m not dead yet… You have no right of protest, Doctors popping in with pills like a no defense nor free man’s bail graveyard junkie… Within the institution, Assisted suicide is funky… away from prying eyes My mother and father know what’s best Drugs and grinding tedium will become a Th ey want to kick Joey out of the nest… way of life. I’m lying at the gates of heaven I’m not dead yet… Th rough the power of the people I was kind of amazed to see St. Peter roll and in the wisdom of the State up in a wheelchair We sentence you to go away I said “hey Pete, I want to go back.” and live your star-crossed fate He said ‘go and give shit to Dr. Quack.” Perhaps in time these walls will fall, I’m lying at the gates of heaven these prisons will be shunned I’m not dead yet.

25 v4 i2 Robin Surgeoner is another English singer PARDON-MOI, DON’T MIND ME who, with two other musicians, is known as An- I’M JUST ALLERGIC TO THE 20TH gryfish. Their CD, Barbed Wire and Pot-Holes, CENTURY meant to be played loudly, narrates the story of PARDON-MOI, DON’T MIND ME a man’s awakening from being a person with a disability to being a member of an oppressed I’M JUST ALLERGIC TO THE 20TH group and learning what he can do to change CENTURY the world for the better. It is the first complete story CD I have encountered by a person with a Take me back in time where I’m away disability about the disability experience. From pollution’s contribution to our Also in the loud music genre, Beethoven’s modern day Nightmare, based in Honolulu, bills itself as the Where doctors don’t just look at me and first deaf rock’n’roll band in the world. Their scratch their head CD, Turn It Up Louder, features the following And there aren’t any flame retardants in partly satirical lyrics from the title song: my bed If you’re looking for a good band And no-one at MacDonald’s eats what I Check us out can’t Check us out Appointing me the ultimate renunciant If you’re looking for a good band Where I can hide from the hydes to save my hide Count us in Formaldehyde, benzaldehyde, pesticide, If you’re looking for a good sound I’m paralyzed! Hear us shout If you’re wondering what we’re all about PARDON-MOI, DON’T MIND ME We’re the only deaf band in the world I’M JUST ALLERGIC TO THE 20TH If you can’t understand all the words all CENTURY we need to do is PARDON-MOI, DON’T MIND ME Turn it up louder I’M JUST ALLERGIC TO THE 20TH Yeah, turn it up louder CENTURY Beethoven’s Nightmare “listens” to the vi- Elaine Kolb, who wrote the first ADAPT brations of the music, as do audience members anthem, “We Will Ride,” (1994) sings the song who may be deaf. They were recently featured in a folk/spiritual style: in a Public Broadcasting System documentary, Through Deaf Eyes (http://www.pbs.org/weta/ We will ride throughdeafeyes/about/index.html). We will ride Musicians have also addressed what might With the strength of human justice on be considered more subtle disability issues. The our side late Kim Palmer succumbed to Multiple Chemi- By the grace of God above cal Sensitivities in 2006. An excerpt of her 1993 Our battle cry is love “Allergic to the 20th Century” appears below: And we will ride Industrialized, deodorized, volatized for We will ride my demise!

26 Far too many people have been suff ering hope that this sampler of disability rights music too long has been. It can also be inspiring. I conclude, We won’t accept excuses as I began, with a poem. Th is is one I published in 1995 after I learned, along with many others, Right is right and wrong is wrong to enjoy dancing from our wheelchairs: And it’s wrong to try and keep us waiting for some charity Th e Wheelie So let’s get ourselves together here and Th ere’s a new dance craze makin’ the now, you and me. rounds Th ere are many other musicians with disabil- Don’t matter bout the speed or sounds. ities who focus on disability issues. Th eir work Going to boogie in a new space may often be found on www.youtube.com by Cranking it up with a diff erent pace. searching the phrases, “disability” and “music.” “Making Love in the Handicap Toilet,” (http:// First thing ya gotta do www.youtube.com/watch?v=AmJ6FDj9R1k) Is be prepared for something new. is a video by “Boys on Wheels,” fronted by the Gotta get off your heels Swedish comedian, Jesper Odelberg. And move onta your wheels. In the 2006 collection, assembled by Eng- Take your chair onta the fl oor land’s Robin Surgeoner, Lindsay Carter’s “Use- Make them rhythms roar less Eaters” uses the Nazi phrase for individu- Wheelies speed and soar. als with disabilities to address today’s bioethics discussions: Skid your wheels Hear the squeals, If just one gene’s out of whack People watchin’ ya twist Th ey’re looking to abort us… Wondrin’ what they’ve missed. Th ey call us useless eaters Make a splash With fucked-up DNA Roll ‘n’ slash All we want is the chance Send your chair onta the fl oor To show you how we love our lives Make them rhythms roar But the movers and the shakers Wheelies speed and soar. Are scared that we’d change your minds Do the wheelie We’re not gonna let you wipe us out Be a big dealie We’re here to stay Do the wheels Our genes are fi ne No need to stay on your heels Our DNA is A OK… Watch the sidewalls soar, fl ash and more Our lives aren’t a tragedy Th em dancers diggin’ to their core. Your life without us is Listen to them rhythms roar Music has the ability to be soothing or rous- Wheelies speed and soar, ing, feelings needed at various times during the Be prepared for somethin’ new struggle to overthrow oppression and attain It’s a craze catchin’ on rights. Music may also be educational, and I with more than a few.

27 v4 i2 Off your heels Henning, P. (1962). “The ballad of Jed On your wheels Clampett,” reprinted in McClellan, D. (March 26, 2005), “Obituary: Paul Slip ‘n’ slide ‘n’ ask for more Henning/Created Beverly Hillbillies. Los Make them rhythms roar Angeles Times. Retrieved July 14, 2007, To a new folklore. from http://www.post-gazette.com/ Steven E. Brown, an editor of the Review of pg/05085/478070.stm Disability Studies and assistant professor of Kolb, E. (1994). We will ride. We are everyone. disability studies at the University of Hawai‘i is also the co-founder of the Institute on Kuppers, P. (June 29, 2007). Crip Music. Disability Culture (http://web.mac.com/ “Legends.” Breath & Shadow: Journal of disculture/), a poet, essayist, and speaker. A Disability Culture and Literature, 4(6), collection of essays, Movie Stars and Sensuous Retrieved July 12, 2007, from http:// Scars: Essays on the Journey from Disability www.abilitymaine.org/breath/June07/ Shame to Disability Pride is available at many kuppers.html (Used with permission online bookstores. He may be contacted at: from the author) [email protected] McDonald, C. J. (1965). I feel like I’m fixin’ to References die rag. Retrieved May 30, 2007, from http://www.countryjoe.com/feelmus. Brown, S. E. (2003). “Oh, don’t you envy us htm our privileged lives?” A review of the disability culture movement. Movie Moyer, J. (1988). For the crime of being stars and sensuous scars: Essays on the different. journey from disability shame to disability pride. New York: iUniverse, 93-109. Musician Web Sites Brown, S. E. (1994). Investigating a culture Angryfish: www.angryfish.co.uk of disability: Final report. Las Cruces, Beethoven’s Nightmare: http://www. NM: Institute on Disability Culture. beethovensnightmare.com Brown, S. E. (1995). The Wheelie.Pain, Elaine Kolb: http://community-2.webtv.net/ plain—and fancy rappings: Poetry from DREAMprod4U/ElaineMarieKolb/ the Disability Culture. Institute on Disability Culture. Las Cruces, NM, Jeff Moyer: www.jeffmoyer.com 29-30. Jesper Odelberg: http://www.odelberg.se/ Disability Rights Education and Defense Fund Johnny Crescendo: www.johnnycrescendo.com (DREDF). (Jan. 21, 1999). 504 Sit-in 20th Anniversary. Retrieved July 29, Kim Palmer: http://www.angelfire.com/az/ox/ 2007, from http://dredf.org/504site/ 504home.html Endnotes Field, J. (1994). The fishing is free. 1 (American Disabled for Accessible Public Transit was the initial acronym, then changed to American Disabled for Attendant Programs Today, after the passage of the Americans with Disabilities Act in 1990. Several years ago, the group decided to stop trying to fit the letters to any acronym. For history of ADAPT, see www.adapt.org)

28 Music to My (Deaf) Ears: The Installation Work of Joseph Grigely Ann Millett University of North Carolina

Abstract: Th e installations of artist and liter- Th e work of artist and literary theorist Jo- ary theorist Joseph Grigely compose memories, seph Grigely composes memories, mannerisms, mannerisms, messages, (mis)communications, messages, (mis)communications, and music. and music to explore the perceptions of and Th e pieces convey the various meanings of the interfaces between deaf and non-deaf worlds. verb to compose: to invent, to create, to collect Grigely has been deaf since the age of ten. His and arrange, to write text or music, and to make visual and literary works exhibit memory and art. His art installations, the focus of this paper, communication as multi-sensual and fragment- are multimedia and multisensory compositions. ed, while they deconstruct stereotypes of deaf- Th ey make visible improvisational, fragmented, ness. and dissonant rhythms and voices. Th ese works and their musical themes inform Grigely’s larger Key Words: Artwork, deafness, music project of exploring the perceptions of and in- “Can you feel the music?” terfaces between deaf and nondeaf worlds. “It’s just hard to be a rock star Music reverberates throughout Grigely’s after say, 33.”1 written and visual forms, which seems at fi rst ironic in light of Grigely’s deafness (due to an Beyond Disciplinarity

Fig. 1: Joseph Grigely, Remembering is a Diffi cult Job but Someone Has to Do It (2005)

29 v4 i2 accident at the age of 10). His installation Re- sampling such comments and mediating them membering is a Difficult Job, But Someone Has through visual arrangement, Grigely frames his to Do It (2005) (fig. 1) centers on the artist’s own fragmented perceptions of communication fond memories of the television show “Gilligan’s in a world that does not accommodate deafness. Island”; clips of the show’s introduction and These themes extend beyond the perceptual unforgettable jingle are projected throughout frames of Grigely’s body, as the works visually the gallery against theatrical backdrops (photo- portray the disjointedness and performativity of graphs of ocean scenes), film stills of the cast, all human memory and communication. and imagined visions of a fictive paradise. The work ties visual culture and, most profoundly, Irony is at the heart of Grigely’s work. His sound to Grigely’s memories of childhood, such primary subject is visual and oral mediation that it encompasses his memories of hearing and and the mixed messages inevitably produced. embodied perceptions prior to his accident. The Communication, particularly in our techno- work portrays the phenomenological experienc- logically driven culture of emails, cell phones, es of hearing loss in a multi-sensorial experience text and instant messages, the internet, and for the viewer, as the music jingle becomes a tac- online chatting and blogging, is endlessly dis- tile, visual element in the piece. Grigely’s recent jointed. Despite, and perhaps because of all the work St. Cecelia (named after the patron saint of communicating devices at our hands, lips, and music) takes these themes further, as he collabo- ears, miscommunication defines contemporary rates with the Baltimore Choral Arts Society to culture. Similarly, memory proves always mul- create a video of Christmas carols, performed tisensory and fragmented. For Grigely, remem- by the choir and rewritten by Grigely to reflect bering the musical jingle to Gilligan’s Island is common misperceptions of lyrics.2 Grigely here no more a feat than anyone, hearing-impaired comments on the nature of perception for indi- or otherwise, recalling music or words from the viduals with all levels of hearing capability, for past. The show itself and viewers’ memories of the jumbling lyrics in order to keep the rhythm it are based in imagination. What most people of music intact is a common mistake for all, and remember iconically and exclusively from the yet particularly amplified when one is lip read- musical jingle is the repetition of, “A three hour ing. tour, a three hour tour,” as well as the melodious run down of the cast’s identities, from Gilligan This kind of amusing juxtaposition of words to Mary Ann. Again, such random sampling and mistaken meanings characterize Grigely’s composes human memories and experiences. most pervasive visual work. The two snippets quoted above are drawn from Grigely’s series The seemingly antithetical, indeed ironic of Conversations with the Hearing installations, juxtaposition of music with deafness is Grigely’s in which he assembles on gallery walls and in- point. The notion that those with hearing loss corporates into three dimensional installations cannot experience and enjoy music is a common pieces of dialogue written on paper for him by misconception, for the majority have some range nondeaf people. The random records of speech of aural access to music along the spectrum of often become ironic and humorous in juxtaposi- hearing loss, and all people (deaf and nondeaf) tion and lead the viewer to question the arbitrary experience music orally, visually, and sensation- nature of communication. For example, in what ally to varying degrees; after all, “feeling the context does one respond, “It’s hard to be a rock music” can elicit a physical and emotional act star after say 33”? One could imagine a conver- of memory, joy, or catharsis. Music educators sation partner writing to Grigely, “Can you feel Ann-Alice Darrow and Diane Merchant Loomis the music?,” due to his deafness, although this (1999) investigate how pervasive stereotypes of phrase is also a familiar dance expression. By deafness in the media affect perceptions about

30 students with hearing loss, fi nding repeated sce- of the nondeaf population. Th is term often re- narios in cultural representations in which non- fers to hearing-impairment in general, whereas deaf characters pity those with hearing loss for “Deaf” individuals share a common language their inability to hear music. Music defi nes the of sign and consider themselves a linguistic mi- “lack” associated with deafness in popular repre- nority. Oralism, the practice of communicat- sentations. Th e work of many deaf musicians, ing through speech versus sign language and the such as Jamie Berke, percussionists Evelyn Glen- predominate basis of deaf education, has a long nie and Shawn Dale Barnett, and the rock band ideological history, associated with not only Beethoven’s Nightmare, as well as the popular ableism (ethnocentrism of the nondeaf), but Gallaudet Dance Company and a 2000 produc- also eugenics of the “defi cient” (Mirzoeff , 1995). tion of the musical West Side Story, performed According to these traditions, deaf people were at MacMurray College in Jacksonville, Illinois, supposedly “cured” when they could most con- with students from the Illinois School for the form to the nondeaf, oral world. Deaf as the Sharks Deaf Side Story (Rigney, 2003), adamantly challenge this false assump- Th e privileging of spoken over written word, tion. Likewise, Grigely’s work takes to task the which Grigely’s works challenge, transcends assumed disconnection between deafness and deaf histories. In Western theology and theory, music. Darrow and Loomis add that making the oral word is associated with truth and log- rhythm visual greatly adds to deaf students’ per- ic. Jacques Derrida and other post-structural- ception and enjoyment of music; in relation, ists have interrogated these traditions in their Grigely creates a rhythm of words and sounds questioning of language as a basis of knowledge. with his artwork, making visual the dynamics of Derrida coined the term “deconstruction” to conversation and music. Darrow and Loomis describe literary and visual acts that invert and defi ne the popular assumption that a hearing confuse conventional language systems. De- impairment forecloses one’s access to music as a construction bears implications well beyond the form of ethnocentrism – the act of judging and scope of this paper, but the elements most rel- degrading another culture by the standards of evant to Grigely’s work are pervasive fragment- one’s own. Grigely’s work turns the tables on ing and quoting ironically, taking quotes in and such ethnocentric biases and historical practices. out of context, and, in these acts, critiquing His Conversations with the Hearing installations convention and systems of knowledge. In rela- invert the scenario of the Western “able-bodied” tion, deconstruction as a practice also involves scientist studying the deaf “Other,” as he per- Roland Barthes’ theories surrounding the death forms an archeology of conversations, records or demystifi cation of the notion of a self-con- nondeaf culture in fragments, and displays his tained, original, independent author/speaker. archive (Davidson, 2002). Grigely’s hearing loss Deconstructive tendencies arise in Grigely’s and need to communicate with nondeaf popu- assemblages of fragmented and decontextual- lations make this work possible, as deafness be- ized quotes, whose anonymity further suggests comes the source and inspiration for art. a gesture toward the irrelevance of the specifi c speaker or author in favor of foregrounding the Grigely also inverts the traditional hierarchy perceptions of the viewer/reader. Grigely show- of oralism and sign language in the Deaf/deaf cases how communication and memory are il- community. Th e distinction between these two logical – nonlinear, random, and incomplete. terms relates to whether one was born with or acquired deafness, how oral one is or chooses Grigely is well-versed in these theoretical to be, and how one identifi es himself or herself. practices. His book, Textalterity: Art, Th eory and People who are “deaf” tend to be more oral, as Textual Criticism (1995), asserts the signifi cant many (like Grigely) have been at one time part changes in meaning and connotation of texts

31 v4 i2 (both visual and literary) over time. He argues Conversations (2005) (fig. 3), Grigely assembles that new contexts inform and transform histori- notes written to him in a variety of situations cal texts’ signification and how the viewer/reader and on a variety of media. These works display makes meaning of history itself. Grigely writes: doodles, scribbles, cartoons, and nonlinear frag- “As a consequence, textalterity is less related to ments recorded on materials that are themselves the medium of a work than to the ways or pro- taken out of context: notebook paper, post-it cesses in which the work is disseminated” (p. 53). notes, postcards, stationary, envelopes, menus, Grigely asserts that the ultimate significances of napkins, pieces of tablecloths, matchbook cov- texts and viewer/reader’s perceptions of them is ers, gallery programs and brochures, foreign always codependent on the texts’ mediation over bills, claim-check stubs, registration cards, rec- time and in and out of contexts. For Grigely, all ipe cards, and pages from magazines and cata- texts are multicontextual and accumulate frag- logs. The media or fabric of these works crosses mented meanings. genres of high and low art while crossing pub- lic and private social settings. The collection of Themes of deconstruction and accumulation these fragments into the shape of a traditional materialize in Grigely’s artworks. In wall hang- painting or mural presents the false illusion of ings such as Multiples (2000) (fig. 2) and 223 integration. In Multiples, different sized, but all Fig. 2: Joseph Grigely, Multiples (2000)

32 Fig. 3: Joseph Grigely, 223 Conversations (2005) straight-edged index cards, sheets of colored pa- in eavesdropping and escape explanation. Th e per, scraps from small note pads, and the back works depict visually the vivid color of conversa- of an envelope, all in various shades of blue, are tions in a chorus of dissonant voices. evenly spaced and assembled in a perfect square. From a distance the work resembles a colorfi eld Davidson (2002) has described Grigely’s painting by Mark Rothko or an example of Yves work as the perception of communication when Klein’s canvases saturated with his trademark “encountered through a deaf optic,” choosing blue. In 223 Conversations, diff erent colors and a strategically ironic concept that underscores sizes from a variety of transcribed materials are the multisensory and multilingual experience of arranged in rectangular mural; from a distance communication for deaf people through frag- it looks like an abstract painting, in a geometric mented acoustics, lip reading, body language pattern that traditionally in art history contains (sign, gesture, and expression), and contextual no tangible subject matter. However, the work clues. With these disjointed puzzles, Grigely is composed of communication. As one gets recreates for the viewer his own embodied ex- closer to translate the texts on the individual perience of interpreting “conversations with the pieces of Multiples, written in all directions, one hearing” while suggesting that the nature of all encounters: “She scored some VIKADIN [sic] communication is puzzling. (pain reliever) mixed w/liquor = superfun”; “sex Grigely deconstructs communication, par- kitten”; “Olivier very good friend”; “that’s not ticularly in the creative media of literature, art, what I’m taking about”; a sketch of a cartoon and music, as purely oral OR visual. Like his dog about to be hit by a fl ying newspaper and methodology in Textalterity, Grigely’s visual staring down at a gun; and “What? Not in a art methods frame images as texts, but specifi - bar! I thought you said Ass.” Th ese curious cally ones that are interpretively open for and and humorous sound bites implicate the viewer lost in translations. In the booklet Vox Populi

33 v4 i2 Mirzoeff underscores how all artwork, with its multiple forms of communication, is always dy- namic, gestural, and open to interpretation and individual perception. In these ways, Mirzoeff compares art with performing sign language and with deafness itself. The means by which visual art mediates its content, context, and expression is always fragmentary, multi-sensual, performa- tive, and subject to endless misunderstandings, as Grigely’s art makes vivid. His subject matter is the nature of mediation. Grigely’s modes of mediation are most mu- sically analogous to electronic sampling. Music historian Mark Katz (2004) explains that digi- tal sampling is a type of computer synthesis in which sound is rendered into notated data. Katz Fig. 4: Joseph Grigely, image of a Canello writes: “On the simplest level sampling works painting from Vox Populi (2003) like a jigsaw puzzle: a sound is cut up into pieces and then put back together to form a digitized (2003) (fig. 4), Grigely reproduces works by the famous 17th century painter of Italian cityscapes, Canaletto, literally turning art into a text. A life-size fiberglass sculpture of a dog drawn from one of Canaletto’s works, titled Dog from Canaletto’s Riva Degli Schiavoni (2003) (fig. 5), stands in for a viewer posed outside the frame and external to the conversations inside the paintings. Art critic Frank Nicholas (2004) has lik- ened this pairing of the dog with the paintings to the relationship of any beings that speak dif- ferent tongues and communicate through com- binations of gestures and sounds. Canaletto’s paintings were popular among tourists to 18th- century Italy and served as souvenirs and frag- Fig. 5: Joseph Grigely, Dog from Canaletto’s Riva mented memories of travel. In art history, con- Degli Schiavoni (2003) versation pieces are paintings of people engaged in socializing and leisure. They are traditionally silent, yet portray conversation and exchange ‘picture’ of that sound” (p. 138). Katz’s descrip- through gestures and body language, similar tion of musical sampling resembles Grigely to sign language (Mirzoeff, 1995). Painting, method of making sound visual and “puzzling.” sculpture, photography, and a range of art- Parallel to musical sampling, Grigely quotes, works communicate through visual and textual fragments, recontextualizes, and mediates sound cues, and in this sense most art is nonoral in its into a unique arrangement. A remixed musical communicative modes. Art historian Nicholas piece, according to Katz, composes representa- tions of original sounds, on which infinite ma-

34 nipulations to tempo, pitch, reverberation, and Deaf & Dumb: a Tale (1994). As in his other frequency are performed. Th ese sounds can be sampling acts, the original context is indicated, “reversed, cut, looped, and layered” (p. 139). yet fragmented for discursive comparisons. Th e Grigely makes this process visual in his Conver- materials, which demonstrate that deaf people sations installations, as the colors of the materials have been medicalized, demonized, pitied, in- written on, variations of writing style, scribbling fantilized, and eugenicized historically, create and doodling, and the juxtapositions of the a metonymic pattern. Th e underlying cultural comments change the tone, pulse, and fl avor of narrative associates deafness again with igno- the individual quotes. rance and individual failure to “overcome” af- fl iction. Many of Grigely’s scholarly articles also em- ploy sampling methods. In 1986, he produced a series of 32 postcards to the artist Sophie Calle in response to her exhibition, “Th e Blind,” in which she photographed a series of blind people, asked them to describe their notion of beauty, and recreated what she interpreted from their responses in a photograph. Grigely found the exhibit problematic in its exploitation of blind- ness as a metaphor and because of Calle’s eth- nocentric mediation of what the subjects “saw” as beauty. On these postcards, he sampled the conventional discourses of disability represented in Calle’s (in his opinion) ableist work. He also included his own embodied experiences as a deaf person perceiving the work. Th e content of these postcards was assembled in an essay that serves as art and disability commentary (Grigely, Fig. 6: Joseph Grigely, Blueberry Surprise 2000). (2003) A more recent essay by Grigely, “Blindness In Grigely’s visual works and in musical sam- and Deafness as Metaphors: An Anthological Es- pling, fragments of manipulated sound are drawn say” (2006), follows in this vein, as he assembles into larger rhythmic compositions. Grigely’s a series of quotes from a variety of writers who visual sampling compares to Katz’s (2004) ex- engage problematic metaphors of blindness and ample of the composer Paul Lansky. In Notjust- deafness. Among the analogies in these clips, moreidlechatter, Lansky digitally manipulates blindness and deafness symbolize ignorance and speech into rhythms of musical sound. In all his acts of ignoring the “truth.” Th is random sam- prior work, rather than quoting original music pling demonstrates the repetition and pervasive Lansky draws on the rich music of everyday life, dissemination of these derogatory metaphors in from conversations to the background “noise” of culture, in sources ranging from popular media private and public spaces. Katz writes: “Notjust- to postmodern art to critical race theory. Th e moreidlechatter wonderfully demonstrates the varying sources are samples and arranged to cre- musical and aesthetic potential of digital tech- ate a larger narrative of cultural ableism. Final- nologies. Like an alchemist, Lansky transforms ly, Grigely assembled a similar narrative drawn the ordinary into the precious, where a spoken from historical scholarship on deafness from word becomes a superhuman chorus” (p. 144). the Renaissance to the present, which he titled Similarly, Grigely draws multiple voices into a

35 v4 i2 kind of magical, electronically produced chorus. nication losses. Grigely’s work incorporates all In Blueberry Surprise (2003) (figs. 6 and 7) (dis- of these subjects in his sampled and mediated played alongside Vox Populi and The Arch of Sep- visual fragments and oral bites. timus Severus), Grigely presents a digital print that loops conversation fragments in alternating Similarly, the 2006 Alejandro González red, orange, and black electronic font, relating Iñárritu film Babel incorporates manifestations to how Katz identifies the process of manipulat- of the Babel metaphor in a specifically contem- ing sound in digital sampling. Samples of the porary, technological, global culture. The met- type read: “Coney Island Cap Ferret Irish peo- onymically related stories that take place across ple”; “lots chives & parsley lots cheese on top”; the globe in the film are thematically linked by “ashtrays, tools. They sent a robot down.” The the loss of communication, despite the charac- work is composed of notes, literally, and Grigely ters’ desperate attempts to cross language and creates a colorful rhythm of voices and notes cultural borders, to utilize cell phones and other with beats of endless chatter and punctuated information systems, and poignantly, to com- statements. Katz describes Lansky’s technique municate in a variety of languages, including as creating an illusion of clarity, which questions those of the deaf. the viewer’s desire to extract clear meaning from One of the main characters, Chieko (played the music. Similarly, Grigely’s patterns and dis- by Rinko Kikuchi) is a deaf Japanese teenager sonant melodies ask his viewers to experience struggling with the suicide of her mother and sound sensually rather than cerebrally – to stand her raging and confusing sexuality. Like many back and take in the view. teenage girls, no one seems to understand her, The puzzling and indecipherable compo- which is amplified by the fact that she commu- nents of Lansky’s and Grigely’s works are aes- nicates with the nondeaf world, like Grigely, thetic and symbolic. Katz describes the “count- through sign, lip reading, body language, and less unintelligible voices” in Lansky’s Notjust- written notes. The film captures her perceptual moreidlechatter as “what one might take for the experiences. For example, a scene in a dental Babel of legend.” “Babel” signifies a confusion office waiting room eliminates audio sound, of voices, particularly in singing, as well as a and the gestures, actions, and movements of lips scene of noisy confusion. Derived from the He- – observations of everyday life – seem random brew Babylon, the term Babel originates from and incomprehensible through the background the Biblical story in which humans attempted silence and through Chieko’s eyes. to build a tower high enough to reach Heaven. In a later scene in a disco, Chieko’s percep- According to the scripture, God intervened by tions of the strobe lights and ear-piercing Amer- confusing the languages of the builders so they ican techno music are intensified by the inter- could not communicate, therefore preventing mittent absence of only the musical sound and human access to Heaven and producing the by the camera’s fast editing. Chieko “feels the origin of different languages on Earth. Grigely’s music,” which is also intensified from her use of work composes such a Babel of voices, exempli- drugs and alcohol. In this Babel of sensory stim- fied by the commissioning by and including of ulation, Chieko’s deafness does not prevent her his work in a 1999 exhibit at the Ikon Gallery from having a powerful moment of understand- titled Babel: Contemporary Art and the Journeys ing. No words are necessary as she witnesses of Conversation. The 11 artists’ work featured the boy she has a crush on making out with her in the exhibit share themes of translation, in- girlfriend. The silence surrounding her as she terruptions, alphabets, relationships of text and walks home captures her feeling of isolation and image, language taken in and out of context, complete absorption in her internal world. Freudian slips, utterances, chatter, and commu-

36 Fig. 7: Joseph Grigely, detail from Blueberry Surprise (2003)

Larger themes of the fi lm manifest in them. She becomes or shows the “monster” Chieko’s interaction with technology: dancing they assume her to be. Meanwhile in the fi lm, in the disco, signing with her deaf girlfriends random, unpredictable relationships arise that through portable video devices, text messaging, cross cultural, geographic, and communicative becoming alerted by timed lights in her apart- barriers. Characters make unexpected connec- ment, and channel surfi ng the television, during tions emotionally, despite the seemingly divided which she briefl y touches on a news story about world. a shooting in Morocco that, unbeknownst to her, is connected to her family history. Th ese Th is kind of metaphoric border is the site technological media both enable and disable her of Grigely’s work. His works take place in the communication with others. Tragedies in Babel interactions between the deaf and the non-deaf among all the characters occur because of mis- and capture the dynamic intersections of cul- interpretations and assumptions of the “Other.” tures and languages. Nicholas Mirzoeff states Th ose in power cause anxiety and provoke defi - (1995, p. 10-11): ance in the marginalized, producing the disem- “Deafness can never be stable or powered to react with violence and destruction. essential, but is always a cultural In reaction to boys who have rejected her because construction in need of renewal, of her deafness, Chieko signs angrily to her deaf and an image in need of focus friend: “Th ey look at us like we’re monstersº and defi nition….In order to I’ll show them the real hairy monster,” as she visualize deafness, a screen must removes her underwear and prepares to fl ash be created and defi ned, which in

37 v4 i2 turn requires that it be framed; quotations and sound fragments that are decon- that is, have defined borders and textualized and recontextualized in digital sam- parameters. Neither the hearing pling are only complete when performed, such nor the deaf live in self-contained that by nature sampling is a performative form worlds, but are interdependent of quotation (p. 140). One of the main ten- on each other. For as the hearing ants of performance art is the engagement of the look at the deaf, the deaf look artist’s work/body with the viewer. The interac- back and disrupt or confirm the tions with viewers and live audiences compose image produced. The result is performance pieces. Because Grigely extracts what I shall call the ‘silent screen’ the identity of individual speakers in his quotes, of deafness, which depicts neither like how most musical sampling eviscerates any the deaf themselves nor the view meaning attached to the original song/sound, of the deaf seen by the hearing, the works are about perception of the viewer/ but rather the product of the speaker. Their main subject is the medium of interaction of the two looking at conversation and the dynamics of communi- each other. It takes two people cation rather than the specific content of the for deafness to be seen, one words. The viewer/listener then becomes a per- with hearing and one without. former/reader and part of the performance. The screen is the product of the intersection of two gazes With metaphorical turntables, Grigely’s vi- which forms a certain space for sual, oral, and written mixes turn the tables on perception, making it possible (in conventional language and knowledge, most this case) to see the deaf within a explicitly, but not exclusively about deafness. category known as deafness. This Darrow and Loomis (1999) note that mis- or notion of the screen is derived lack of communication between deaf and non- from that proposed by Jacques deaf communities lead to misunderstandings Lacan: ‘the screen is the locus of and false stereotypes. But within the interfaces mediation’ between the gaze and of cultures and languages, albeit fragmented, the subject of representation.” unexpected relations do occur, as they do in the film Babel. Connections go hand-to-paper, The screen, which Mirzeoff’s describes as the sign-to-sign, lips-to-eyes, alongside misconnec- interaction between deaf and nondeaf worlds, tions. Grigely’s work, in highlighting and doc- pixilates in Grigely’s work. His compositional umenting the flavors, melodies, and colors of frames perform and record the performances of social interactions, suggest that all communica- such interfaces. tion is a multimedia performance, composed of gestures, expressions, body language, and into- Grigely’s work both documents and embod- nation. All means if communication contribute ies performances. At the Barbican Art Centre in to the rhythm of seeing, speaking, performing, London, Grigely composed Barbican Conversa- quoting, talking, talking back, uttering, chat- tions (1998) from exchanges with visitors whom ting, and babeling. he approached at the centre. He sampled these interactions and printed them on brochures and Ann Millett received her PhD from the Univer- posters, which were redistributed throughout sity of North Carolina at Chapel Hill in 2005, the Art Centre’s information and communica- where she focused on modern and contempo- tion systems. Here, the pieces document live rary art history and disability studies. She is performances and take part in multiple forms of currently teaching full time for the University of performative exchange. Katz (2004) states that North Carolina at Greensboro.

38 References González Iñárritu, A. (Writer/Director). (2006). Babel [Motion picture]. Banner, F., Biggs, S., Jones, S., & Ikon Gallery. United States: Paramount Home (1999). Babel: Contemporary art Entertainment. and the journeys of communication. Birmingham, UK: Ikon Gallery. Grigely, J. (2006, August). Blindness and deafness as metaphors: An anthological Biemiller, L. (2000, November 17). Art that essay. Journal of Visual Culture, 5(2), pricks up your ears. Chronicle of Higher 227-241. Education 47: 1(1), A88. Grigely, J. (1994). Deaf & dumb: A tale. Brueggemann, B. J. (1999). Lend me your New York, N.Y: J. Grigely & White ear: Rhetorical constructions of deafness. Columns. Washington, D.C.: Gallaudet University Press. Grigely, J. (1995). Textalterity: Art, theory and textual criticism. Ann Arbor: University Cash, S. (2006). New and now (Vol. 94). Brant of Michigan Press. Publications, Inc. Grigely, J. (2000). Postcards to Sophie Calle. Darrow, A. (2006). Th e role of music in deaf In T. Siebers (Ed.), Th e body aesthetic: culture: Deaf students’ perception of From fi ne art to body modifi cation (pp. emotion in music. Journal of Music 17-40). Ann Arbor: University of Th erapy, 43, 2-15. Michigan Press. Darrow, A., & Loomis. D. M. (1999). Music Grigely, J. (2003). Th e next Documenta should and deaf culture: Images from the be curated by an Artist. Retrieved, media and their interpretation by deaf 2007, from E-Flux (Electronic Flux and hearing students. Journal of Music Corporation). Th erapy, 36, 88-10. Heartney, E. (2006). Joseph Grigely at Cohan Davidson, M. (2002). Hearing things: Th e and Leslie. Art in America, 94, 189- scandal of speech in deaf performance. 190. In S. Snyder, B. J. Brueggemann, & R. Garland-Th omson (Eds.), Disability Kaiser, K. A., & Johnson, K. E. (2000). Th e studies: Enabling the humanities (pp. 76- eff ect of an interactive experience on 87). New York: Th e Modern Language music majors’ perceptions of music for Association. deaf students. Journal of Music Th erapy, 37, 222-234. Fineman, M. (2007). Reviews 1996: Joseph Grigely at AC Project Room. Retrieved Katz, M. (2004). Capturing sound. Berkeley: from,http://www.artnet.com/ University of California Press. magazine_pre2000/reviews/fi neman/ fi neman7-10-96.asp Kimmelman, M. (2001, August 31). Bits and pieces from the intersection where a Frank, N. (2004, May/June). Oak Park, deaf man meets the hearing. New York Illinois. Art Papers, 28(3), 51-52. Times. Retrieved May 27, 2007, from http://www.nytimes.com Gandy Gallery, Th e. (n.d.). Retrieved July 8, 2007, from http://www.gandy-gallery. com

39 v4 i2 Kotaji, V. (2007). Mich_le Didier Gallery. Scott, M. (1999-2007). Joseph Grigely: Retrieved May 27, 2007, from www. Conversations and portraits. CIRCA micheledidier.com art magazine. Retrieved May 27, 2007, from http://www.recirca.com/ Leslie and Cohan Gallery. (2007). Retrieved July 8, 2007, from http://www. Stoesz, D. (2003, June). Must-see TV. cohanandleslie.com ARTnews, 102(6), 78, 80, 82. Mirzoeff, N. (1995). Silent poetry: Deafness, Williamson, A. (1999, October). Writing art. sign, and visual culture in modern Art Monthly, 230, 13-17. France. Princeton, N.J.: Princeton University Press. Endnotes

Rigney, M. (2003). Deaf side story. Washington, 1 These phrases from Grigely’s work are quoted in Scott, DC: Gallaudet University Press. 1999. 2 St Cecelia will be exhibited May 5-August 19 at The Rubinstein, R. (1996, April). Visual voices. Art Contemporary Gallery in Baltimore, MD. in America, 84, 94-101. Schuchman, J. S. (1988). Hollywood speaks: Deafness and the film entertainment industry. Urbana: University of Illinois Press.

Disability and Diversity Studies Certificate

A fifteen-credit graduate level Certificate Program offering an interdisciplinary approach to disability and diversity studies for students and professionals across disciplines including education, social work, psychology, public health, law, nursing, sociology, political science, and others.

For more information please contact: www.cds.hawaii.edu/certificates or www.hawaii.edu/graduatestudies/ fields/html/departments/cd/ disability/disability.htm

40 Les Paul at 91 Alex Lubet, Ph.D. University of Minnesota

Abstract: Guitar legend Les Paul continues to impairment with regard to many other activi- perform to enthusiastic audiences as a nonage- ties – the injury turned Paul into a left-handed narian whose age and impairments impact his writer -- his locked arm appears to have had no playing technique. Th is essay describes the ex- permanent impact on his playing; indeed, many emplary sociocultural relations that permit Paul, of his major recordings and performances lay a person with disabilities largely a function of ahead of him post-injury. What has aff ected advanced age, to continue his career as a pro- his playing, though, is the arthritis that began ductive, respected, and aff ectionately esteemed later in life, and perhaps also additional aspects member of a community. of aging. Particularly with regard to sheer veloc- ity, a normative expectation of any jazz virtuoso Key Words: Les Paul, musicians with disabili- and in his heyday one of the guitarist’s fortes, ties, aging Les Paul simply doesn’t play as he once did; he In August 2006, I caught guitarist Les Paul’s doesn’t even come close. regular Monday evening gig at the Iridium on In some other musical idioms, notably Broadway in Manhattan. Ninety-one at the Western classical music, Paul’s now limited time, the legendary instrumentalist and inventor technical facility would have forced him into played two shows in short succession to packed retirement, perhaps long ago. Classical music’s houses. His weekly outings at this lovely New requirement to perform a standard, canonic rep- York club have welcomed such guests as Paul ertoire in a standardized, canonic manner, with McCartney, Keith Richards, and Tony Bennett. a one-size-fi ts-all technique, would surely have He is the only member of both the Rock and had him drummed him out of the business once Roll Hall of Fame and National Inventors Hall he couldn’t keep up with younger players. But, of Fame, the latter for such modern musical in all fairness, it’s also unlikely that another jazz marvels and necessities as the electric guitar (the musician of less than Paul’s iconic status would Gibson “Les Paul” model remains an industry still be working if similarly impaired, devoid of standard to this day) and multi-track recording. Paul’s legacy of earlier glory days, memories of While it’s unlikely many of Paul’s fans see which inform his current performances for his it this way, his shows are exemplars of disabil- devotees every time he simply shows up, not un- ity culture or, perhaps more accurately, the in- like the performances of certain aging rockers clusion of disability in culture. Another of the who mostly fall back on the oldies they recorded guitarist’s claims to fame is his mode of recovery before they became oldies themselves. from a serious auto accident in 1948, in which Still, that Paul is feted weekly by a presti- he broke his right elbow and faced the prospect gious club full of admirers in the jazz capital of of amputation. Th e limited orthopedic surgi- the world is, especially from the perspective of cal technique of the time mandated that to save disability culture, a thing of beauty and a joy for his arm at all required that it be set immobile. the foreseeable future. Further, his performanc- Paul opted for placing his arm permanently in es backed by a broadly multigenerational trio of playing position such that he could continue to considerably younger players manifest many el- perform. What is doubtless a serious mobility

41 v4 i2 ements of a bold and optimistic paradigm for a That Paul’s ensemble is represented by four new praxis of disability in music. generations and includes both sexes -- the young- est member is Ms. Nikki Parrott, an Australian We live in a time when, virtually regardless bassist – is likely happenstance. Nonetheless, of the nature of one’s impairment, a combina- their unusual demographics feel like part of the tion of technology and the enlightened thinking celebration. Much of the humor is brazenly ris- of at least some communities make a rich par- qu_, both gay and straight, uproariously funny, ticipatory life in music possible. Unfortunately, and always sex positive. Ms. Parrott, an obvious mainstream values have thus far failed to keep focus at times, gives even more than she gets. pace with either technological or philosophical progress in music making. And while Les Paul The importance of this substantial compo- is surely one of the greatest and most influential nent of the show – whose comedic/theatrical technological innovators in the history of music, element rivals the musical component in time it is not his or other’s material inventions, but allotted – should not be underestimated as a the attitude of great sophistication of the com- manifestation of disability culture. It is a veri- munity comprised of all involved in his shows, table orgy (in the best sense) of sex-positive ban- that enlightens with regard to matters of disabil- ter in which a mobility-impaired nonagenarian’s ity and aging these weekly celebrations of his continued vitality and passion are fully acknowl- near century-long dedication to musical excel- edged, essential, and accepted as utterly natural. lence. It is not only that this elderly man, his impair- ment largely a function of his age, is fully sup- If the guitarist’s hands no longer move as fast ported in leading a rich life of culture, friend- or tirelessly as they once did, there is much that ship, and honor by his community comprised remains in his musicality to be enjoyed, as well of bandmates, the music industry (in the form as some elements that are better than ever which of clubs, the Iridium and earlier Manhattan’s flow directly and unambiguously from his ma- Fat Tuesday, that have hosted Paul’s weekly gigs turity. The younger players in his multigenera- since 1984), and his many fans. The technical tional quartet are there to pick up the technical musical limitations that have come with age slack by providing the stunningly fast barrages have been replaced with a gigantic and grow- of notes that he no longer plays. While Paul ing capacity for humor and stories, which, like a is no longer a speed demon, his compositions, good wine, doubtless improves over time. arrangements, interpretations, instrumental in- novations, and the exquisitely unique sound What may be the greatest glory of this of his guitar and amplification remain to spark tableau, in which neither age nor impairment these younger players to want to share his stage, impede life’s best (and bawdiest) joys, is its in- along with the many jazz and rock legends who digenous naturalness. Other cultural praxes in simply show up to pay homage. While play- which the elderly and, much less often, people ing less notes than in his youth, Paul sings and with disabilities, are awarded status of honor banters. No longer able to set his strings afire, and engagement are well known. But these his near-century of musical and life experience are mostly regarded in the West as exotic; the has only enhanced another of his artistic gifts; Confucianism of East and Southeast Asia may that of sharing stories. He is a spectacular ra- be most familiar. What happens at the Iridium conteur, mostly hilarious, occasionally touching on Monday nights, full of the signification of and wistful. Unlike the performances of some instrumental virtuosity and sexual boasting, is aging rockers, for whom maturity seems impos- entirely a product of American vernacular so- sible simply to accept as natural, there is neither ciomusical praxis. It is hardly a typical product denial nor an excess of nostalgia. – American popular culture is far from devoid

42 of an obsession with callow youth – but it is Directed by John Paulson and written and nonetheless one whose elements derive from a produced by John Arntz, Les Paul – Chasing rich tradition in which musical performance, in Sound! is the work of John Paulson Productions both its sounds and its staging, serve to display of Falls Church, Virginia. At this writing, a ten- prowess, often by African-Americans who might minute trailer and nearly three minutes of out- otherwise be regarded as powerless. (Although takes are available for viewing at http://lespaul- Paul’s group du jour was entirely white, the Af- fi lm.com/. rican-American origins of its jazz music and jazz Alex Lubet humor are undeniable). At these Monday night , Associate Editor of RDS and co- gigs, power belongs to the old and impaired, editor of this special forum on disability and whose breadth of experience has rendered wise music, is Morse Alumni/Graduate & Profes- (though also to the group’s junior member and sional Distinguished Teaching Professor of Mu- only woman Ms. Parrott, whose role in the ban- sic, American Studies, and Jewish Studies at the ter is second only to Paul’s and includes, “I Like University of Minnesota. A composer, multi- Big Instruments,” her erotically-charged enco- instrumentalist, theatre artist, and author, he has mium to her double bass and another type of been called the “dean of the fi eld” of disability large tool that remains unsung). studies in music. His writings on music and dis- ability have appeared/will appear in RDS, Dis- Th at there is this glorious weekly celebration ability Studies Quarterly, Encyclopedia of Disabil- of the genius of age and impairment by means ity (Sage), Medical Problems of Performing Artists, of musical and sexual signifi cation would mean Highway 61 Revisited: Bob Dylan from Minneso- little were the Iridium not wheelchair accessible, ta to the World (University of Minnesota Press), but it is, and this is noted prominently on their and Richard Wagner for the New Millennium: web page (http://iridiumjazzclub.com/). (Th e Essays in Music and Culture (Palgrave Macmil- club is also smoke-free). Th ose who make the lan), edited by Lubet, Matthew Bribitzer-Stull, pilgrimage to hear this guitar legend get a great and Gottfried Wagner. deal more and better than just a concert, in the form of a rare dialect of disability culture that also embraces the concerns of age. It is a must- see for New Yorkers and visitors. Do not hesi- tate, as Les Paul will be 92 by the time this essay makes print. Be there or be square.

Notes While the biographical and other back- ground information in this article is readily available from numerous sources on and doubt- less beyond the Internet, likely the best and most enjoyable presentation is the 2007 DVD docu- mentary Les Paul – Chasing Sound!, premiered on PBS in July 12, 2007, after this essay was completed. Among its many vignettes are those in which the guitarist/inventor speaks candidly about his impaired arm and his arthritis.

43 v4 i2 Book Review ety show and postmodernism (Charles L. Mee, Jr.’s A Summer Evening in Des, and P.H. *reaks: Title: Beyond Victims and Villains: The Hidden History of People with Disabilities, a Contemporary Plays by Disabled Playwrights collaborative project developed and adapted by Editor: Victoria Ann Lewis Doris Baizley and Victoria Ann Lewis herself). In addition, the anthologized plays relate the ex- Publisher: Theatre Communications Group, perience of disability to a wide range of themes 2006 and concerns: racial discrimination and violence (Shoot!), the carnivalistic celebration of multiple Paper, ISBN: 1-55936-250-2, 406 pages body types beyond restrictive notions of nor- Cost: $19.95 USD mality (A Summer Evening), representations of disability throughout history (P.H. *reaks), the

Reviews Reviewer: Markus Wessendorf struggle for independent living (John Belluso’s Gretty Good Time, Creeps, P.H. *reaks), relation- Even though many previously excluded ships and sexual expression (Mike Ervin’s The communities, from gays and lesbians to African History of Bowling, P.H. *reaks, Gretty Good Americans to Chicanos, have successfully made Time), and the dependence on personal assis- inroads into established American theatre since tants often complicated by issues of class and the 1960s, this has not been the case for play- race (No One as Nasty). wrights with—and writing about—disabilities. While many disabled theatre artists have found a In her introduction to the anthology, Lewis niche in stand-up comedy, performance art and provides valuable background information on the occasional grassroots theatre group, disabled the social, political, and legislative struggles of writers using the traditional genre of drama to the disability community that have informed the represent disability issues rarely see their work included plays. Since Beyond Victims and Villains produced or performed by major theatrical in- was published by TCG, the national organiza- stitutions. tion for American non-profit theatre with more than 440 member theatres in 47 states, it can be Victoria Ann Lewis, the founder and past hoped that more community and regional the- director of Center Theatre Group/Mark Taper atres will take note and change their attitude to- Forum’s Other Voices Project, has edited Be- wards producing plays by disabled playwrights. yond Victims and Villains: Contemporary Plays There is a chance that one of the plays included by Disabled Playwrights to “encourage profes- in Beyond Victims and Villains will soon open at sional, academic and community-based theaters a theatre near you. to produce the plays included” (xv). Lewis’s an- thology covers a wide range of American and Markus Wessendorf, Ph.D., is Associate Canadian plays that were written by disabled Professor at the Department of Theatre dramatists between the 1960s and 1990s and, and Dance at the University of Hawai‘i at with one exception, professionally produced. Manoa. He is currently working on a book Only one play in the collection represents dra- on “Post-9/11 Plays: Critical Engagements matic realism: David Freeman’s Creeps, which is with Terrorism and the ‘War on Terror’ in set in the men’s bathroom of a sheltered work- Contemporary Theatre and Performance.” shop for people with cerebral palsy. Each of the Email: [email protected] other plays combines various dramatic styles and techniques: realism and epic theatre (Lynn Manning’s Shoot!), surrealism and expression- ism (Susan Nussbaum’s No One as Nasty), vari-

44 Book Review and a physician facing many prejudicial obsta- cles) and transmitted to his children. He has Title: Disability Rights and Wrongs held faculty positions at Sunderland and other Author: Tom Shakespeare British universities. In this book, he cross-ex- amines most of the strongly held positions of Publisher: Routledge, 2006 the European disability movements, thus setting up controversy, as announced on the book cov- Cloth, ISBN: 978-0-415-34718 9, 240 pages er. However, on every issue he looks at all sides, Paper, ISBN: 978-0-415-34719-8 and comes through as a negotiator, eff ectively identifying the middle ground. E-book, ISBN: 978-0-203-64009 For example, in chapter 9 he considers care, Cost: Cloth: $125.00 USD, Paper: $35.95 support, and assistance. First, he expresses soli- USD darity with other self-advocates for the goals of Reviewer: Peter W. Dowrick maximizing independence and choice, while minimizing abuse and paternalism. He de- As the potential reader may suspect from scribes the more radical views in the fi ght to the play on words in the title, the author has a escape care and its often unwanted baggage. British sense of humor. Indeed, his book, “re- Th en he emphasizes (at length) the complex- examine[s] some of the key principles of the ity of the debate, including the value of some British disability rights movement” (p. 198). kinds of care, support, or assistance, for some I recommend reading the succinct chapter 13 circumstances. He off ers a complex, “pluralist “Concluding Th oughts” fi rst, for a perspec- approach” – which might, in my view, be just tive on this thoughtful and thought-provoking fl exibility with informed choice. book. It is generally accessible and well-written, notwithstanding a number of misspelled words Chapter 11 is entitled “Love, Friendship, and grammatical oddities. Electronic and print Intimacy.” Dr. Shakespeare seems well qualifi ed versions are available. on this topic, as a person and as a sociologist, as he is on many of his topics (e.g., Shakespeare, Th e book will, or should, be read by students Gillespie-Sells, & Davies, 1996). Th is chapter and scholars in disability studies. Th at may is diff erent from the others in that the author mean university departments of sociology, pub- off ers some how-to information, although more lic health, psychology, or education. It should, descriptive than procedural. He notes this topic but probably will not, reach most specialized is neglected, even avoided, in mainstream dis- training programs for medically-oriented pro- ability studies–although there is considerable fessionals – although it provides extensive and literature on it related to people with mental ill- valuable examinations of the so-called medical ness or intellectual disabilities. model of disability. Th e book is designed to reach disabled people also, particularly self-ad- I have said this book is generally accessible. vocates, and family members, although it does However, some arguments are long, and include not compromise on its expectations of the edu- unexplained esoteric terms, such as “medical cational background of the reader. gaze,” “genealogical method,” and post-structur- alism.” Th e “Conclusion” section at the end of Tom Shakespeare is highly informed – per- each chapter is helpful, but readers should not sonally and professionally. He identifi es his own expect a summary, rather concluding remarks achondroplasia (“dwarfi sm,” p. 4), inherited that often digress into new areas. As always, from his father (remarkably named William, I would love a version of the book that more

45 v4 i2 succinctly and directly made its points, and was Las Vegas, or whatever Daryl “Chill” Mitchell is half as long. playing at the moment. In the face of all of this, I imagine that I am not the only one salivat- I recommend this book, which is not overall ing over a new poetry collection by a disabled as radical as it is promoted to be. At the end writer, particularly one with a title as tantalizing of chapter 2, the author says, “Disability studies as The Amputee’s Guide to Sex. would be better off without the social model, which has become fatally undermined by its It is not Jillian Weise’s fault that she has to own contradictions and inadequacies.” These deal with all these expectations, that I enter the are fighting words in the UK and Europe. But collection with a certain hunger and that, some- better to read the last chapter before the “Intro- how, at collection’s end, I am left still thirsty, duction.” still wanting more. But somehow, ironically, also wanting less. I was fifty pages into the collection Peter Dowrick, Ph.D., is Professor of before I read a poem that did not directly in- Disability Studies and Graduate Studies in voke a lover, the body, sex, pain, or disability. Of Psychology at University of Hawai‘i. Dr. course, what should I have expected from a book Dowrick received the 2005 Distinguished thus titled? It is a Catch-22. We want artists to Contribution to Practice Award of Division do what they are known for, but also to show, 27, American Psychological Association, for versatility, and growth. That usually means for his work in prevention and community action. critics, writing that is somehow outside of your- Visit www.creating-futures.org. self, not merely autobiography. Whether that is a fair criticism or not, people make it. Justin Reference Timberlake’s second album FutureSex/Lovesounds Shakespeare, T., Gillespie-Sells, K., & Davies, (2006) is regaled by most critics as showing such D. (1996). The sexual politics of growth precisely because it is not as openly au- disability. London: Cassell. tobiographical as Justified (2002). Though this is Weise’s first book, it probably says something that my initial read of the book left me saying Book Review to myself, “Ok, I get it. Write about something Title: The Amputee’s Guide to Sex else.” Author: Jillian Weise To be sure, there are gems here, and Weise’s publication record as well as mainstream reviews Publisher: Soft Skull Press, 2007. in places such as Publisher’s Weekly certainly speaks to her burgeoning reputation as a poet Paper, ISBN: 1-933368-52-7, 84 pages to watch. When a lover asks, “What does it feel Cost: Paper $14.95 USD like?” in the poem, “Abscission,” she responds: Reviewer: Johnson Cheu “I think of the wives/of the twenty-thousand masons/who It is too bad that there is a paucity of dis- raised the Taj Mahal/…the ability poetry out there in the mainstream, that emperor ordered a mass disability arts in general are often underground, amputation of thumbs/so the found in independent film festivals, and on- craftsmen could never build/a line at artist’s websites; that disabled actors on more perfect mausoleum. Did mainstream television shows playing characters their/wives ask questions while is pretty much reduced to Mitch Longley on playing/with the remaining

46 fi ngers of their/husbands hands? this collection is worth reading for both the Did they ask, Can/you feel my breadth of the coverage of its themes, and the hand here? How about now?” detail embodied in Weise’s poetic eye. Just do (pp. 9-10). not expect to leave it feeling particularly…uh… passionate. Th ere is great imagery and depth there, cer- tainly enough to keep the interest of disabled Johnson Cheu, Ph.D., is a visiting assistant and non-disabled readers alike. Likewise, her professor in the Department of Writing, Rheto- poetry, at times, exhibits an attention to plain ric, and American Cultures at Michigan State language reminiscent of a Sharon Olds. Th ere’s University. Recently, he was the poetry/fi ction nary a moment where a reader might ask, “Now, editor of Disability Studies Quarterly and is cur- what was that poem about?” rently on the editorial board of the Journal of Literary Disability. He may be contacted at: But why did this book tire me out initially? [email protected] Mostly, because for a book supposedly about sex, the sex is often cold and sterile. Consider References these lines from the title poem: “Mobility shows confi dence. Th ink for/two people. Know where Navarro, M. (2007, May 13). Clearly, frankly, your limbs are at all times; know/where your unabashedly, disabled. Th e New York partner’s limbs are at all times” (p. 3). Where Times [Electronic version.], http:// is the passion or desire in that? Now, it is quite www.nytimes.com/2007/05/13/ possible that Weise is saying to the reader, “Hey, fashion/13disabled.html?scp=1&sq=cle look at how medicalized our bodies are. What’s arly+frankly+disabled&st=nyt wrong with that?” In fact, one could hear these lines as a voiceover of some bad sex training fi lm Timberlake J. (2006). FutureSex/LoveSounds in rehab or a Veterans Aff airs hospital. Indeed, if [CD]. Jive Records. that is what Weise is doing, forcing a hard look Timberlake, J. (2002). Justifi ed [CD]. Jive at the medicalization of disability sexuality for Records. either the medical professionals or the general disability reader of this book, then it is a neat Book Review hat trick. Title: Deaf in Japan: Signing and the Politics of In New York Times article (“Clearly, Frankly,” Identity 2007) Weise is quoted as saying, “I’m hoping Author: Karen Nakamura that there’s a middle ground, that this [disabil- ity] is just another kind of diff erence.” Perhaps, Publisher: Cornell University Press, 2006. Weise has achieved that goal too well. Th at is, the disability, and the sex therein, becomes not Cloth, ISBN: 978-0-8014-4350-3, 226 pages only too procedural, too antiseptic, but also too Paper, ISBN: 978-0-8014-7356-2 common, like having sex with any other non- disabled person. As a colleague of mine who was Cost: Cloth $59.95 USD, Paper $19.95 USD also, coincidentally, reading this book comment- Reviewer: ed, “Surely, there were encounters where people Patrick Kermit did not know she was an amputee, or perhaps If you look into discussions related to deaf- people who even fetishized it?” Where are the ness in the western world, you are bound to poems about those unexpected moments?” Th e encounter the distinction between cultural sex here is often rather pedantic. On the whole, and medical D/deafness. Th is distinction often

47 v4 i2 serves as a key example showing how models of in the deaf Japanese community about what disability can be constructed either socially or “true” Japanese sign language is. Similar discus- medically. In most western countries, signing sions have occurred wherever Deaf communi- people have found it truly liberating to replace ties debate the implications of the linguistic dis- the medical notion of deafness with the notion covery that signed languages are as full fledged of belonging to a linguistic and cultural com- and natural as spoken ones. On the basis of her munity. thorough descriptions, Nakamura manages to contextualize this discussion and analyze it in a But, what do signing people do in a soci- way that really grasps the complexity of the mat- ety where being a linguistic minority historically ter at hand. In this respect, I would recommend has been more difficult than being a disabled Nakamura to anyone venturing an ethnograph- member of the majority community? Karen ic study. She insists on trying to understand Nakamura’s book Deaf in Japan: Signing and the and render her informants as they are and not Politics of Identity starts with this question. The as subjects that can be framed and fitted into book offers a historical account of the Japanese certain models. deaf community from the late nineteenth centu- ry until the present. The basis for this account is Nakamura focuses on Japanese deaf society, four in-depth interviews with deaf women from but I have found the way she deals with ques- three generations. Their life stories give an abun- tions related to signing and identity highly rel- dant view into life conditions for deaf people at evant and challenging for me as a Scandinavian different historical periods. The author contex- researcher mostly acquainted with Scandinavian tualizes these stories, analyzing both the specific deaf communities. There is also a stylistic- bo Japanese deaf history (e.g., educational systems nus for those willing to pay the book’s moderate for deaf children, the foundation and develop- price. I think even those with little more than ment of deaf organisations, job opportunities, a curiosity for deaf questions or disability stud- interpreter services) as well as the general devel- ies will find the book easy to read. Nakamura opment of the Japanese society. writes in a very accessible style, mostly avoiding academic tribal lingo. I enjoyed reading it and This is, however, not primarily a historical have no reservations recommending the book to account. It is a fascinating and groundbreaking others. anthropological study that should offer plenty of food for thought to anyone interested in the Patrick Kermit is a doctoral research fellow at fields of disability research and Deaf studies. The the Norwegian University of Science and Tech- focal point throughout the book is the question nology (NTNU) in Trondheim. He has a de- of identity. As a Japanese national, raised in the gree in philosophy and is also a sign language United States, Nakamura is well acquainted with interpreter. Currently he is working on a project the above mentioned tension between the differ- assessing ethical aspects related to paediatric co- ent notions of D/deafness, and she frequently chlear implantation. He may be contacted at: contrasts Japan with the west. Nevertheless, she [email protected] never falls into the temptation of taking a nor- mative stance in favor of one notion of D/deaf- ness before the other. This might provoke those who think there is a strict dichotomy between the social and medical models. For the less or- thodox ones, however, Nakamura’s methodolog- ical approach is more compelling. For example, she presents the reader with recent discussions

48 Book Review anything is likely to pop up to attempt to fi ll the void. And so, Day takes us through a series Title: (my) Dying Is Fun: A Comedy of Disabled of treatment regimens ranging from science-fi c- Misadventures tion electronic devices, developed in the former Author: Christopher Day Soviet Union, to herbal medicine (the required tests alone proved too stressful) to acupunc- Publisher: Traff ord Publishing, 2007 ture (recommended, as long as the therapist is Chinese-trained rather than “new age”) to bee Paper, ISBN: 1-4251-0622-6 venom and on to stuff with names like “cranial Cost: Paper $19.99 USD osteopathy” and (I kid you not) “forgiveness therapy” (pp. 120-131). And at the end of the Reviewer: Mark F. Romoser day, Day is rather exhausted, a bit poorer – and (my) Dying Is Fun: A Comedy of Disabled still dying. Misadventures is the chronicle of a Welsh eco- Any book about the end of life, no matter architect living with what the British call “mo- how much it focuses on the humorous aspects tor neurone disease” – ALS. You are probably of daily living with a disability, must eventually thinking that the concepts “ALS” and “humor” come around to philosophy. Th is is no excep- cannot possibly coexist, except possibly in a re- tion: “If life makes any sense, so must dying, for jected episode of Family Guy. And you would it will almost (?) certainly be part of every life. be wrong. Day has the dry, droll British humor Life is a terminal condition – we’re all dying, thing down cold. Much of the book reads like some faster than others. Anyone, therefore, who what would happen if Monty Python were to re- feels miserable about dying, must feel miserable unite and (inexplicably) perform a sketch based about living” (p. 167). (my) Dying is Fun is defi - on ALS. And as if all this was not enough, Day nitely not the work of someone who feels miser- adds several of his own illustrations. Th ey are able about living. Th is is highly recommended not easy to describe in a print review obviously, for anyone dealing with end-of-life situations. but suffi ce it to say that one is captioned “Many It off ers a rare and surprisingly lighthearted washbasins off er a complimentary crotch-wash- glimpse of the end of life from the point of view ing service” (p. 112). of the person whose life is ending. Do not get so wrapped up in Day’s daily Mark Romoser was diagnosed with autism at travails that you miss the larger points. For in- the age of 4, by the renowned Dr. Leo Kanner. stance, some of the funniest moments in the After attending eight diff erent schools and two book come while Day is traveling to Spain for a colleges, he became a cum laude graduate of Yale seminar. Th at’s right: a guy with ALS, unable to in 1985. He is employed as the Policy and Pro- speak and using crutches, is traveling to another gram Analyst at Hawaii Centers for Indepen- country for a professional seminar – and doing dent Living in Honolulu. He may be contacted so as a matter of course, without any fanfare or at: markr@pacifi cil.org sobbing violins. He is also raising two teenagers, who view him as “a walking (in my case, hob- bling) cash machine or instant taxi” (p. 67). Of interest to many will be Day’s descrip- tions of various forms of therapy he has tried. When conventional medicine throws up its hands and says there is nothing it can do, almost

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