|The Review of Disability Studies: An International Journal
Volume 4, Issue 2
To Dance Beneath the Diamond Sky with One Hand… Part 2
Alex Lubet, University of Minnesota
Sapir Academic College
This 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 first installment, please view the online version of Volume 4, Issue 1 at www.rds.hawaii.edu or contact firstname.lastname@example.org to order a print copy.
Table of Contents
(Beyond) Popular Culture
Transformer Man: An Exploration of Disability in Neil Young’s Life and Music
People with Disabilities Get Ready: Curtis Mayfield in the 1990s
“Hear us Shout:” Music Celebrating Disability Pride and Liberation
Reviewed by Steven E. Brown
Music to My (Deaf) Ears: The Installation Work of Joseph Grigely
Les Paul at 91
(Beyond) Popular Culture
Transformer Man: An Exploration of Disability in Neil Young’s Life and Music
Abstract: This article begins with a short personal narrative of my own struggles growing up with a form of cerebral palsy (right hemiplegia), and the way music – and in particular Neil Young’s songs – provided a crucial emotional and cathartic outlet for me. I then examine Neil Young’s intimate personal connection with disability, including his own struggles with polio and epilepsy and his experiences raising his two sons Zeke and Ben, both of whom have cerebral palsy (one milder, one quite severe). I delve into many of Neil’s songs that either subtly or explicitly explore issues of disability and difference, such as Mr. Soul and Transformer Man. I conclude by recounting my experience attending the Bridge School Benefit, an annual concert put on by Neil and his wife Pegi to raise funds for the school they founded for disabled children. In sum, this article will attempt to capture something of the way in which Neil Young and other artists have created music that is both personally therapeutic and collectively empowering for members of the disabled community.
Key Words: Neil Young, music and disability, music as empowerment
As a child and teenager growing up with right hemiplegia, a form of cerebral palsy that limits the movement and sensation in the right side of my body, feeling different was an unavoidable part of my everyday life. Most boys want to be good at sports – I was no exception. I couldn’t be, and it hurt. Most boys take pride in learning to tie their shoelaces – I was no exception. I couldn’t learn to tie them, and it hurt. Most boys get nervous about the way they look and move when they’re dancing with girls – I got really nervous. My young life with a disability sometimes felt very lonely.
I found very few peers or adults who were willing to discuss my feelings with me directly or honestly. The people around me seemed afraid to hear about my experiences with a disability – when I attempted to voice my growing sense of frustration, pain, and above all, exclusion, the usual response I got was, “Oh…nobody notices it” or, “Oh…it doesn’t really matter.” These were nice sentiments, but it was hard for me to believe that nobody was noticing my spastic right arm when I was consistently being called a “gimp” or a “crip” in the schoolyard.
Unable to find real emotional support from most of the people in my life, I found myself turning more and more to music. The emotional intensity and nakedness of bands like Pearl Jam and Nirvana struck a chord with me - here, at least, people weren’t averting their eyes from uncomfortable feelings. As often happens to youths living with difference as a fundamental part of their lives, my suspicion of “normalcy” was sprouting up quickly: I remember feeling certain that despite (or perhaps because of) their “unadult” jobs and behavior, Eddie Vedder or Kurt Cobain would have been willing to sit down and honestly talk with me about my disability in a way so many of the “normal” adults I knew seemed unable or unwilling to do. It seemed to me that the world of those who made and loved music was inordinately populated by people who not only accepted difference, but celebrated it. This world was a welcome change from my schoolyard.
As I delved deeper into music, I found myself gravitating somewhat ineluctably towards the orbit of one particular musician: Neil Percival Young, the transplanted Canadian artist who made his home on a ranch in Northern California. Neil Young certainly knew something about expressing painful feelings with naked intensity. In his country hit “Old Man,” he bares his need for “someone to love me the whole day through” (“Old Man,” 1972), while in his well-known rock anthem of self-loathing he repeats a simple phrase that resonates with anyone honest enough to acknowledge self-doubt: “Why do I keep fucking up?” (“Fuckin Up,” 1990). I knew I’d hit upon something genuine.
But my connection to Neil Young’s music quickly moved beyond his unflinching honesty. The deeper I immersed myself in Neil Young’s literally bottomless catalog, the clearer it became to me that Young was an artist who not only celebrated difference, but he appeared to embody it. In his over 40 years as a professional musician, Young had doggedly resisted the music industry’s efforts to neatly pigeonhole or categorize him in the way it eventually does to almost all of its artists. He ricocheted from solo acoustic nakedness to feedback-soaked garage rock in the blink of an eye, and before you blinked again he was performing with a 10-piece horn section. He was a folk singer, a cowboy crooner, an arena rocker, a Hendrix-esque guitar soloist, an acoustic troubadour, and a bluesman all balled up into one – and you never could predict which Neil would show up to the recording studio or concert stage. He was vulnerable and aggressive and helpless and powerful and shy and scary and funny all at once. I intuitively felt that anyone as willfully resistant to categorization as Neil Young must not have been a big fan of labels and assumptions – assumptions, for instance, like “disabled equals weak” or “handicapped equals helpless.” When it came to Neil Young’s music, normal categories, assumptions and labels didn’t make a lot of sense.
As it turned out, they made just as little sense when it came to his personal life – a life I was fascinated to discover has been touched indelibly by disability in multiple forms. Over his 60-odd years on the planet, Neil Young has experienced a childhood bout of polio that permanently weakened the left side of his body, the adult onset of severe epilepsy, and most recently, a brain aneurysm that nearly took his life. While most stars might have wanted to distance themselves from any or all of these conditions to preserve an “attractive” public image, Young’s considerable distaste for conventional conceptions of attractiveness enabled him to shrug off the tremendous pressure from his handlers to “keep all this weird polio/epilepsy shit quiet” (MuchMusic TV, 1986). Keeping up an attractive public image was far from the only trapping of fame Young resisted: he was so uncomfortable with widespread adulation that his manager would regularly harangue Young about his “unquenchable determination to destroy your career and take me down with it” (British Radio-2 FM, 1987). In the liner notes to his greatest hits album, Decade, Young had this to say about his smash country-pop hit “Heart of Gold”: “Heart of Gold put me in the middle of the road. Traveling there soon became a bore so I headed for the ditch. A rougher ride but I saw more interesting people there” (Decade, 1977). Disability, a fixture in Young’s life since the age of six, proved to be one of the most interesting companions that Young would topple headlong into the ditch with. It’s no surprise that an artist so personally and professionally resistant to dominant culture and expectations would allow his experiences and feelings around disability to leak steadily into his music, often at the cost of commercial success. In Neil Young’s life, disability has been alternately triumph, struggle, grief and joy – and in each of these incarnations, it’s been a powerful artistic muse.
“Did I get songs from the [epileptic] seizures? Probably. “After the seizures…you start waking up. Then you find out who you are by looking around. Having to learn my own name – I had to do that a couple of times. Learn who I was. Get familiar with it. Then hear the first LIE – or the first thing somebody would say that wasn’t exactly true – it would be like a fucking terrible trauma to me when I was coming back from these seizures. It’s like being a baby. Anything that’s not pure, you go, “What the?” – because you’re starting over again, regrouping. Everything’s coming back together. I can remember one seizure at the ranch in 1974… probably the last big one I had. It was mind-blowing…so I had just had a grand mal seizure and I went for a walk – and I had just barely figured out that it was my ranch – and this doctor was with me and he was sayin’, ‘Now, we’re not gonna tell people this happened, because it will upset them. The only people who need to know about this are you and me and Russ Kunkel’ – a drummer who was there, too. So it was like being born again and wakin’ up and seein’ everything is beautiful – seein’ things for the first time - and then having someone tell you, ‘Well, this is not what it seems. We’re not gonna tell. People are not gonna know what happened.’ So it’s a lie. Why should there be a lie? When you’re born, I don’t think you can conceive of telling a lie. But if you can imagine being born, and within 10 minutes after you’re born, you’re introduced to the concept of a lie – y’know, you’ve only been alive for five minutes, and now they’re teaching you how to lie. So there’s something that happens there” (McDonough, 2003, pp. 176-177).
The effort of uneasily trying to readjust to an impure world manifests itself in many of Young’s earlier songs, when he had not yet discovered a medication that helped him control his seizures. In “Mr. Soul,” perhaps Young’s most well-known song from his days as part of the legendary 1960s band Buffalo Springfield, Neil devotes the entire third verse to an oblique exploration of his seizures that leaves the listener feeling the same blurry sense of confusion and loss of control Young felt both immediately before and after a seizure: “In a while will the smile on my face turn to plaster? / Stick around while the clown who is sick does the trick of disaster / For the race of my head and my face is moving much faster / Is it strange I should change? I don't know, why don't you ask her?” (“Mr. Soul,” 1967). There is certainly fear and anxiety in these lyrics, but there is something of an ironic strength and humor to them as well – is the clown’s seizure a “trick” he’s playing on an unsophisticated audience? What is actually going on behind that innocuous smile – who’s winning the race between what the world can see (the face) and what’s going on inside (the head)? Perhaps more crucially, which experience – the external plastered serenity or the formless internal combustion – is more real? Young makes no judgments. And even at this early stage in his writing career, Young offers a subtle challenge to the predominant view of disability – in this case, epilepsy – as defective or shameful. Is it really that strange, really such a disaster, that his seizures should change him every now and then? By directing the listener to ask this question of an unidentified female, Young is perhaps commenting on the sexual insecurity that so often accompanies disability. But, underneath the anxiety is a glimpse of the notion that if the woman in question could be thoughtful enough not to see the clown’s seizures as strange or disastrous, the clown might suddenly feel quite a bit better about himself without needing the seizures to disappear.
Young wrote several other early songs that explored the feelings of isolation and sexual paralysis than can emerge out of conditions like polio or epilepsy. “Expecting To Fly,” another seminal Buffalo Springfield tune, gives the listener a sidelong glance at Young’s fear of physical intimacy: “There you stood on the edge of your feather, expecting to fly / Well, I laughed, I wondered whether I could wave goodbye” (“Expecting To Fly,” 1967). A potential partner may be waiting to fly with him, but Young is planning his exit strategy before the plane gets off the ground. Indeed, the producer of this song, Jack Nitzsche, recalls Young explicitly telling him at the time that “Expecting To Fly” was about “fear of making it with a girl” – specifically, Young’s escalating anxiety as he approached his home one night because a female admirer was waiting for him inside and he was terrified he might have a seizure while with her (McDonough, 2003, p. 278). A friend of Young’s during this period named Donna Port remembers trying to set him up with a girlfriend of hers, and how “Neil would spend the night with her, but he’d never take his clothes off. She’d get too close, and Neil would freak out” (McDonough, 2003, p. 188). Port, whose own family had been touched by polio, drew a link between Young’s emaciated frame and his sexual reluctance: “His legs were like toothpicks, and one day I just asked him [if he’d had polio]. The look of terror gave me the answer. Then it just flowed out. He was wrapped up in a blanket at the time, crying… We talked a lot about how cruel kids are when you’re growing up. It explained a lot…This guy had a heavy load, physically and emotionally… Neil never felt he fit” (McDonough, 2003, p.188).
Not fitting in is undoubtedly a heavy load, but Young bore up under it with increasing defiance and occasional glee as his career moved unsteadily forward. By the late 1970s, his seizures had essentially disappeared and he was happily married to his second wife, Pegi. But disability was still part of Young’s everyday existence: His first child Zeke was born with a form of hemiplegia very similar to my own that left his right leg shorter than his left leg and his right hand pinched. As a boy, Zeke “used to hit my [pinched] hand with a spoon and say, ‘I hate you! I hate you!” (McDonough, 2003, p. 472). Zeke acknowledges that he “couldn’t accept myself as being – y’know – different…Turning doorknobs, turning on lights, stuff that I couldn’t do like other little boys my age would frustrate the hell out of me, and I’d cry until I fell asleep” (McDonough, 2003, pp. 472-473). Zeke’s shorter right leg meant he had to wear a shoe brace, and he was regularly mocked by his schoolmates, who called him “Bigfoot.” He remembers, “One girl started teasing me about the shoe brace and I took it off and whacked her across the head with it” (McDonough, 2003, pp. 472-473). Many of Zeke’s childhood experiences closely mirror my own. Neil Young penned the country song “My Boy” for Zeke, and it expresses both grief over his son’s suffering and admiration at Zeke’s determination and self-will (1985). Once again, Young’s lyrics indicate a far deeper frustration with the pervasive social stigma around disability than with Zeke’s actual physical impairment.
With the birth of Young’s second son Ben, though, Neil would have perhaps his most profound encounter with disability yet. Ben Young is, in Neil’s own words,
“a spastic, quadriplegic, non-oral child… with a big heart and beautiful smile. He’s just a wonderful human being… It did something to me… when he was born… Cerebral palsy – nobody really knows what it is. It’s just the name for something… It’s a lot like a stroke at birth. Or before birth… Ben is very sensitive – we don’t know how cognizant he is. His cognitive abilities seem to shift with the wind. Sometimes he’s real sharp, other times he’s not. There’s no strict set of rules with Ben” (McDonough, 2003, p. 545).
Neil and Ben Young share an unusually close relationship, and father and son spend a lot of time enjoying their mutual obsession with model train sets. Ben participates in the activities with the help of an elongated plastic arm attached to his wheelchair that Ben activates and commands by pushing a button next to his head. The system was designed by his father, and an engineer who helped design the electronic arm remembers that when they first got the system working, “I don’t know who was more excited… Neil or Ben” (McDonough, 2003, p. 544). Neil himself says now that “I feel we’ve come a long way – we’ve been successful dealing with what we’ve been given to deal with. And we haven’t let it destroy us. Y’know, a lot of families break up when this happens with one kid, and we’ve got two. And they’re great kids – I love my kids. It’s just real. This is the condition of life they have” (McDonough, 2003, p. 548).
But the initial years after Ben’s diagnosis were filled with uncertainty, struggle, and self-doubt. For Young, the best emotional outlet remained his music, and the songs that poured out of him during this period are some of the most creative he’s ever written. They are also among his least commercial or accessible – and most widely criticized – compositions. As both a diehard Neil Young fan and a disability advocate, it seems fitting to me that a life as socially marginalized and outside the mainstream as Ben Young’s would inspire some of the most challenging, misunderstood, and ultimately rewarding music of Neil Young’s career.
When Neil Young released his infamous album Trans in December 1982, even the most loyal members of his fan base were appalled. Young had recorded most of the songs of the album using something called a vocoder – a device which allowed him to mask and distort his voice to emit eerie, clipped robotic-sounding vocals. The effect of the vocoder was to make it seem as though you were listening to him through a crackly World War II walkie-talkie rather than a modern record player. Young then plugged in these vocal tracks to a giant computer synthesizer he had recently purchased. The results were a series of murky, electronic songs that felt lonely, cold and impenetrable to Young’s devoted fans. Gone were Young’s emotive, quivering voice, the wailing guitar and the pulsating drums. Instead fans were left with lyrics sung in a computerized monotone that made the words almost impossible to understand and synthetic, repetitive keyboard and drum loops. Fans hated it and critics eviscerated it. To most people, listening to Trans felt something like trying to wade through a waist-deep swamp in thick, rolling layers of fog. There was simply nothing to grab onto, either musically or emotionally.
So what was Young doing? At the time, nobody had any idea, but fans who knew something about Ben’s cerebral palsy and who were patient enough to wade through some of the incomprehensibly distant vocals and decipher some of the lyrics might have been able to piece part of the puzzle together. One song in particular, “Transformer Man,” illuminates the source of Young’s motivation for crafting the most unconventional album of a career built upon defying convention.
“Transformer Man, Transformer Man / You run the show, remote control / Direct the action with the / Push of a button” (“Transformer Man,” 1982). Here, Young is addressing his cherished time with Ben in their model-train barn. “Transformer Man, Transformer Man / Still in command / Your eyes are shining on a beam / Through the galaxy of love / Transformer Man, Transformer Man / Unlock the secrets / Let us throw off the chains / That hold you down”. Understood in the context of Neil’s relationship with Ben, the paternal tenderness that shines through here is sharp and poignant. So why would Young choose to submerge this declaration of affection for his son in gauzy layers of synthesizer and flat, robotic vocals?
“Trans is definitely out-there. It went way over everybody’s head,” Young tells McDonough in Shakey (McDonough, 2003, p. 556). “Here’s a guy trying to tell you something and you cannot understand it…If you listen to all the mechanical voices, if you read the lyrics, it’s clear that it’s the beginning of my search for a nonoral, a severely physically handicapped nonoral person, to find some sort of interface for communication. The computers and the heartbeat all have to come together here – where chemistry and electronics meet. That’s what I was getting at. And that was completely misunderstood.
“‘Transformer Man’ is a song for my kid. If you read the words and look at my child in his wheelchair, with his little button and switch on his head, his train set and his transformer, the whole thing is for him. And people… they missed it. Completely. They put me down for fucking around with things that I didn’t understand – for getting involved in something that I shouldn’t have been involved in – well, fuck them. But it hurt me, because this was for my kid. I know what those songs are all about, and maybe knowing this story, if you listen to ‘Transformer Man,’ – you gotta realize, you can’t understand the words – you can’t understand the words – and I can’t understand my son’s words. So feel that. For me, even talking about this is very difficult, because I want my children to be able to hear and read what I say and feel loved and know that everything is okay. The thing is, it’s communication, but it’s not getting through. And that’s what my son is” (McDonough, 2003, p. 556-558).
“Transformer Man, Transformer Man / Sooner or later you’ll have to see / The cause and effect / So many things still left to do / But we haven’t made it yet / Every morning when I look in your eyes / I feel electrified / By you” (“Transformer Man,” 1982). Ten years after Trans was released, Young would perform an effects-free, acoustic version of “Transformer Man” during the taping of a performance for his MTV Unplugged CD, complete with melodic backing female vocals. By 1993, it seems, Young felt secure that enough clear communication was getting through between him and Ben for Ben to know that he was both loved and respected by his father. This newfound security allowed Young to perform “Transformer Man” in the naked, direct way he did during the Unplugged taping, and it allowed his fans to finally see “Transformer Man” for what it is: The gentlest love song of Young’s career.
In 1986, Neil Young and his wife Pegi hosted the first Bridge School Benefit, a concert held outside San Francisco to benefit the school they had recently founded for physically and cognitively disabled children, including their son Ben. The school itself “is an educational program dedicated to ensuring that children with severe speech and physical impairments achieve full participation in their communities through the use of augmentative & alternative means of communication (AAC) and assistive technology (AT) applications” (http://www.bridgeschool.org). The school’s mission statement is to be a centre for “ongoing programs, projects and activities that move all people closer to a life without barriers to expression and communication” (http://www.bridgeschool.org).
The inaugural 1986 benefit show featured, among others, Bruce Springsteen, Tom Petty and the Heartbreakers, and Young’s own occasional cohorts, Crosby, Stills, and Nash. When planning the concert’s set-up, Neil and Pegi made the decision to seat all the children enrolled in the Bridge School on an elevated platform behind the stage, directly in the sightlines of both the crowd and the musical performers. This decision carried a powerful symbolic resonance: unlike other benefit concerts, where the actual recipients of the raised funds are kept carefully out of sight so as to “not upset” the audience as well as “shield” the recipients themselves, Neil and Pegi were demonstrating both their pride in the Bridge School children and their faith in the children’s personal and emotional strength. Additionally, the Youngs insist that all songs at the Bridge School Benefits be performed acoustically. Hard-rock bands, then, are forced to re-interpret their most popular compositions and present them within this unfamiliar, stripped-down framework. Neil and Pegi’s insistence on the acoustic format has caused more than one hard-rock band intense performance anxiety (Marilyn Manson remembers being “scared shitless” before taking the stage), but even this decision fits in with the Bridge School’s ethos: Just like the children enrolled in the school, musicians performing at the benefit are discovering alternative modes of communication they might previously have assumed to be ineffective.
The benefit concerts for the Bridge School have continued annually, and over the years, major recording artists from different generations and across wildly diverse genres have performed to support the Bridge School kids. A (very small) sample of the artists who have played at a Bridge School benefit includes: Bob Dylan, The Grateful Dead, John Lee Hooker, Van Halen, R.E.M., Radiohead, Patti Smith, The Who, Dave Matthews Band, the Smashing Pumpkins, Tom Waits, the Foo Fighters, and Pearl Jam. Many of the musicians or groups have returned to play at the Bridge School Benefit multiple times, leading to close friendships between many of the artists and the children enrolled in the School. In 1999, for example, Pearl Jam’s Eddie Vedder (whose band has currently played the Bridge School Benefit 7 times) dedicated the last song of Pearl Jam’s set to Maricor, a nonoral quadriplegic young woman whom he’d bonded with over the years. The reason for the dedication? Maricor had just been accepted to Berkeley, one of the United States’ top universities. Four years later, Pearl Jam was back on stage at another Bridge School Benefit, and Vedder once again toasted Maricor before starting the band’s last song of the evening. This time, Maricor had just graduated from Berkeley with honors.
In 2006 the Bridge School celebrated its twentieth anniversary, and I was finally able to attend the annual concert. I found the atmosphere to be precisely as I’d imagined from years of listening to the live bootlegs of past performances. On their platform behind the stage, the Bridge School kids beamed as musicians turned and serenaded them directly. In between performances, spokespeople from the Bridge School and some of the children themselves thanked the audience and updated us on the school’s latest programs and innovations. By the end of the night, it was clear that Neil and Pegi’s Bridge School benefit concerts were fundamentally a celebration of the courage, ingenuity, and resilience of the children attending the School. The struggle and pain of growing up with disabilities in an intolerant society was certainly acknowledged by musicians and school representatives alike, but the overwhelming sentiment of the day was that the kids attending the Bridge School were not only building full and rich lives for themselves: they were making a difference by embodying difference with both individual and collective pride.
As I ambled off the concert grounds with the strains of Young’s show-ending “Rockin’ in the Free World” still ringing in my ears, I noticed that a booth had one of Young’s CDs on sale. Wandering over, I expected to see copies of Harvest, After the Gold Rush, or one of Young’s other “hit” CDs on sale. When I looked closely, though, the disc on sale was Trans. Grinning from ear-to-ear, I bought a copy and headed off into the warm fall night.
Isaac Stein, M.Ed., is a Doctoral Student in Counseling Psychology at the University of Toronto whose doctoral thesis explores the emotional impact of physical disabilities on children and adolescents. He is a disability rights advocate and a diehard Neil Young fan.