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					                       Disabled Artists or Artists Disabled?

                    A Space and Time for a Minority Culture

                  or the Spectacle of “Special” Programming?

                        Alex Lubet & Adrian Anantawan

                     University of Minnesota Symposium on

                    Disability Studies & Inclusive Education

                                    July 24, 2010




Prefatory Note: Parts of this essay are written in first person singular. The author

of such passages is always identified in parentheses. This seemed the least

awkward strategy in a co-authored essay whose authors sometimes report their

individual experiences, including attendance at or participation in the

performances discussed.)



Introduction, Part 1: Disability in “mainstream performance”



Our interest here is disability performance, specifically theatre and music, though

with the assumption that the lessons from musical examples may be at least

provisionally extrapolated to other media. Our particular interest is in those

venues in which artists with disabilities – or perhaps the artists‟ disabilities – are

highlighted and what consequences, positive or negative, result from this mode
and of presentation. Comparisons with presentations of artists with disabilities in

“mainstream” venues, where disability is not an emphasis, are both a necessary

and beneficial comparison, though not a focus.



Two of our three primary examples are of musicians. Music and disability make

interesting bedfellows. In many traditions, music is regarded as a talent, an

exceptional ability, the opposite of disability. Among these is the Western

classical tradition. It is perhaps because classical music provides the forms and

norms of many music education systems, even those that use somewhat more

expansive bodies of repertoire (such as jazz), that people with disabilities,

particularly mobility impairments, are so widely excluded from the opportunity to

share in participatory (as opposed to passive listening) musical experiences (Lubet

2004; Lubet 2009).



At the same time, other musical traditions and even a few practices within

Western classical music have provided significant professional opportunities for

people with disabilities (Lubet 2006a & b). In several prominent cases, mostly

pertaining to blind people, certain categories of musical employment have even

been set aside for people with disabilities, as in Ukraine (Kononenko) or Japan

(Matisoff) or else have been positively identified with the many blind musicians

within their ranks (Sacks 2009). Regardless of whether a tradition is particularly

disability-friendly or not, there have been numerous musicians with disabilities
across many places, times, and idioms who have achieved great distinction as

performers and/or composers.



Within this cohort of highly musically-able people with disabilities, an important

distinction must be made between those whose impairments are of limited or no

relevance to their music making and those for whom the impairment demands a

major transformation in technique and possibly also sound. In the former

category are most blind musicians, including, for example, Ray Charles, Stevie

Wonder, and Art Tatum, who work in idioms such as blues and jazz that do not

(absolutely) require the ability to read printed scores or view a conductor. Also

included are classical violinists Itzhak Perlman and Rachel Barton Pine, whose

impairments are ambulatory and not associated with playing their instruments,

and classical baritone Thomas Quasthoff, a thalidomide survivor of short stature,

with attenuated limbs, but whose singing is unaffected (though prejudice against

people with disabilities was certainly responsible for many obstacles placed in his

career path, particularly in opera) (Quasthoff 2008). In the latter category are

one-handed classical pianists including Gary Graffman and Leon Fleisher (the

latter having regained much of the ability to play with his right hand through

Rolfing and Botox treatments) (Lubet 2010), deaf percussionist Evelyn Glennie,

and congenital amputee violinist Adrian Anantawan. An important distinction

between the pianists versus Glennie and Anantawan is that the pianists perform an

adapted, one-handed repertoire, while Glennie and Anantawan play the standard

repertoire of their instruments. (In addition, Glennie has commissioned many
new works and plays a great deal of music, including improvisation, beyond the

classical repertoire) (Riedelsheimer 2007).



It must be noted here that, although most of the names here (a small handful of

examples) are from Western classical music, the apparent vast majority of

professional musicians with disabilities, who are blind, do not play classical

music and could not meet the music reading and conductor watching demands of

the profession. Classical performers are mentioned here because those named are

quite well-known and have a variety of impairment conditions that make different

demands – including few or no demands whatever -- on their work. In the case of

ambulatorily impaired musicians like Perlman and Barton Pine, there may be

“extraperformative” disability-related challenges involving transportation,

cartage, or playing position – seated versus the customary standing – but the

actual mechanics of performing are not significantly different from those of other

violinists. (Just how exceptional professional classical musicians with disabilities

are is discussed in Lubet 2004.)



Two things all these musicians have in common, including Charles, Wonder, and

countless other blind musicians in many traditions, are that they perform and/or

compose (almost?) exclusively for “mainstream,” that is, mostly nondisabled

audiences, and that their work lacks overt disability content. This is not a value

judgment and certainly not a criticism. In some cases, the lack of disability

narrative may seem surprising, though it should not. My (Alex Lubet‟s)
experience with teaching thousands of students the history of rock music is that

they believe that popular song is best when sung by its composer and that such

lyrics are and should be autobiographical. In that context, it would seem to follow

that, for example, blind blues singers would often sing about their blindness,

particularly since the blues idiom is often cathartic and blindness does make life

challenging, in manners both socially constructed and, I would assert, not.

(Scholars Susan Wendell and Tobin Siebers (2008) both argue persuasively – and

in opposition to some other disability theorists -- that the hardships of impairment

are not entirely sociocultural.) What these students fail to understand is that, like

any professionals, musicians provide a service. While there are surely times when

an autobiographical lyric might resonate with an audience (John Lennon wrote

many in his later years), blues singers have never had a mostly blind or otherwise

disabled audience. This not because their audiences have been blind- or

disability-averse, though some listeners may indeed be (though this would

contradict their taste in singers), but because songs about blindness or disability

do not serve their needs, including their own catharsis (Taylor and Barker 2007).

Ethnomusicologist Jeff Tod Titon‟s exchange with blind bluesman “Lazy” Bill

Lucas is illustrative here (Titon 2004).



Introduction, Part 2: Disability Arts

Like any number of other demographic groups, the arts of people with disabilities

are sometimes presented collectively and/or thematically. We see these

presentations as falling into two broad, but not mutually exclusive or easily
distinguished categories. The distinction seems analogous to that witnessed in the

choice of prepositions used in the names of the two major blindness organizations

in the US, the American Foundation for the Blind and the National Foundation of

the Blind (italics ours) (Kudlick 2001). The former‟s original intention was

helping rather than empowering the blind and the language used in its current

website (http://www.afb.org/section.asp?SectionID=42) has not entirely shed that

legacy. The latter has always had blind leadership and focused on empowerment.



Perhaps the most familiar presenter for artists with disabilities is VSA, formerly

VSA Arts and before that Very Special Arts, the name behind the initials having

been shed in 1999 because “Words such as „special‟ and „handicapped‟ do not

reflect current language trends in the United States and many other countries” and

“the organization has regularly looked at its own identity to ensure it is consistent

with current attitudes and language used by the disability community.” (Italics

ours) (http://www.vsarts.org/x16.xml) VSA Arts has chapters in over sixty

countries. The national Board of Directors includes at least one person with a

disability (VSA‟s website does not include biographies), actor Marlee Matlin, and

there is an affirmative action statement on its website that includes both minorities

and people with disabilities, but there appears to be no particular emphasis on

having people with disabilities in key staff or board roles. While the organization

has a robust and admirable program of advocacy for access to the arts for people

with disabilities and an admirable interest in inclusive education, our interest here
is primarily in VSA Arts as a presenter, particularly its international festival, most

recently held in June 2010. I (Adrian Anantawan) performed and observed.



Another such organization is the Society for Arts in Healthcare. SAH is

unambivalent about being comprised of professionals. The “About Our

Members” section of its website

(http://www.thesah.org/template/page.cfm?page_id=11) does not include people

with disabilities as a potential category of membership. The Board of Directors

seems to be similarly constituted.



Like VSA, SAH is not principally a presenter, but the organization‟s 2010

conference included several performances. It opened with a concert by Minnesota

artists with disabilities in Minneapolis‟s renowned Guthrie Theatre. I (Alex

Lubet) attended this performance, which serves as the point of departure for much

of our discussion.



Art of all kinds made by people with disabilities is also presented as “disability

culture” in venues where people with disabilities and their allies are clearly

calling the shots. One of the best known and most consistent of these is the

annual conference of the Society for Disability Studies. Although disability

culture is likewise a subject of great importance, it is essentially beyond the

purview of this essay. Useful references include Brown for music (2008) and

Lewis for theatre (2006).
Method

Our examination of disability arts venues is grounded in “social confluence

theory,” as described in my (Alex Lubet‟s) Music, Disability, and Society (2010).

This theory argues that the fundamental unit of contemporary, information-

oriented, globalized society is not the individual as a being with a stable identity,

but the person in the context of the moment, the social confluence. In such a

society, a person‟s identity can morph quickly and constantly, even several times

over in the course of a day.



The particular facet of identity explored in Music, Disability, and Society is

disability status, the primary examples from situations involving music (with

additional, extramusical examples for comparison). What is revealed numerous

times is that interacting with music can at times be radically enabling or disabling.

An example of the former is jazz pianist Horace Parlan, a hemiplegic polio

survivor with a significantly impaired right hand, who has enjoyed a full career as

both a leader and sideman, the latter perhaps an even more remarkable role,

owing to the number of prominent players who hired him rather than a pianist

with two fully-able hands. An example of music disabling is that of

instrumentalists with focal dystonia such as the one-handed classical pianists Gary

Graffman and Leon Fleisher. Not only are their conditions brought on by playing,

they have little or no impact on any other use of their right hands (Sacks 2008). It
is essentially only when they perform the severely limited left-hand repertoire that

they become (quite noticeably) disabled.



What follows is our application of social confluence theory to some of the

disability arts events in which we have been involved. These are critiqued

according to the ways in which they enable and/or disabled the artists.

Additionally, the commentary made by or about the artists and their careers, a

common feature of disability arts events, will be discussed for what it reveals

about disablement and enablement in the artists‟ careers, beyond the presentations

themselves.



VSA Arts (and others) (Adrian Anantawan)



The Society for the Arts in Healthcare (Alex Lubet)



On April 28, 2010, at its annual meeting, the Society for the Arts in Healthcare

held a “Welcome Performance” in Minneapolis‟s renowned Guthrie Theatre. The

event featured three local artists, two of whom have much larger reputations, all

billed as having disabilities. They were storyteller/theatre artist Kevin Kling,

guitarist Billy McLaughlin, and drummer Jason Gerling. Kling and McLaughlin

are both quite well-known, the latter perhaps less so in recent years. Gerling is

much younger and his work is mostly behind-the-scenes scoring industrial films

rather than live performance, thus his limited notoriety. The evening‟s
presentation demands a close reading as an example of disability performance

under the auspices not of people with disabilities, but of disability or, more

accurately and, I think, critically in this case, healthcare professionals. The

reading includes much supplementary information on the artists, particularly their

media representations.



Conference registration was quite expensive as befits the SAH‟s membership,

many of whom earn physician‟s incomes. (I, Alex Lubet, am not a member and

had received a complimentary ticket to this event only.) It is thus not surprising

that there were almost no people with (visible) disabilities in the audience, a US

demographic group who, in 2008 were 25.3% living in poverty and 60.7%

unemployed (Disability Statistic 2010). (I saw one person using a wheelchair.)

As a concert of popular culture, there was only a brief program with little detail

about the works performed. However, the printed handout provided fairly

detailed descriptions of each artist‟s disability, with video screens giving

extremely extensive diagnostic information regarding, for example, the vertebrae

between which Gerling‟s spinal cord was severed in an auto accident. It was by

far the most medicalized characterization of performers I have ever experienced.

While the evening was obviously in large part about the artist‟s impairments (a

premise whose virtues demand careful scrutiny), it is difficult to conceive of the

need for that level of intimacy. Even if one chooses to marvel at an artist with a

disability‟s gifts in light of his or her challenges, the need for that level of

anatomical intimacy is puzzling. If the information had been put to some use
medically or there were prospects for such application, there might conceivably

be justification for broadcast the etiologies behind the impairments. But, as will

be shown shortly, this is not the case. Apparently, however, the information was

presumed to be of interest to this particular audience.



What follows is an account of each artist‟s individual presentation and

performance, supplemented with further research about their work in the context

of their impairments. Although Kling simply took the stage and told stories, the

two musicians each prefaced their act with an informational and somewhat flashy

big-screen video. There was also an “finale” set following the individual sets that

brought all three artists together onstage.



Kevin Kling

The first to take the stage, storyteller, actor, and author Kevin Kling stood apart

from the other artists on the program in several ways. Kling is currently the most

famous of the three, an artist of at least national renown, exceeded in reputation as

a Minnesota monologist only by Garrison Keillor. He is thus, of course, not

primarily a musician, although he played during the trio finale and has performed

music for years. His very significant impairments, a left arm and hand attenuated

by a birth defect and a right arm completely incapacitated in a motorcycle

accident in 2001, differ from those of the musicians on the program in that they

do not affect his performance as a storyteller, insofar as he simply “tells” without

resort to physical gesture or any other visual theatrical devices. However, that is
an oversimplification, insofar as Kling‟s storytelling act might be quite different

were he able to use his arms more. In addition, prior to his accident, he appears to

acted more in plays, something that is difficult now, except in roles carefully

crafted for and by Kling himself (sometimes with collaborators). His final story

of the evening also referenced his use of voice-activated software to write at his

computer, a common accommodation for people with mobility impairments (and

one I used for several years before abandoning it out of frustration with its limited

accuracy and need for constant correction).



Kling is also one of a cohort of people with disabilities who have referred to the

advantages or improvements their impairments have brought to their lives. In a

2008 interview (Brown), he spoke of how the impact of the accident that

paralyzed his right arm was “80% positive” and how it focused him as an artist

and helped him to define his goals and projects.



Kling did not precede his act with a video narrative of disability. He told four

stories. The first two, like much of the material he presents as a regular

commentator on National Public Radio, concerned life in Minnesota, but not his

impairments. The third story included reference to his birth defect, but was set

prior in a time prior to the accident that completely paralyzed his right arm. The

last story dealt with the accident and life with such severe mobility constraints.
There were many things to commend Kling‟s performance as both art and

politics. He is quite simply a world-class writer and storyteller, something borne

out by his résumé. He has turned his impairment into a virtue, by eschewing

physical gesture and focusing on his words and vocal inflections. Structurally, his

“crescendo” into disability content was interesting in itself as well as appropriate

to the implicit (it was not billed as such) and explicit (it was ubiquitous in the

presentation) theme of the evening. The final story of his motorcycle accident

and recovery (available in its entirety at http://www.kevinkling.com/about) was,

to me, an exemplar of disability culture in its humor and its realistic refusal either

to devolve into a fantasy of “overcoming” or “triumph” or to wallow in self-pity.

Some of Kling‟s best lines arrive near the end:



       As terrible as this was and as scared as I am sometimes, I still feel

       blessed. And when I get discouraged I just look at our two wiener

       dogs because they are the best example of a „can do‟ attitude in a

       „can‟t do‟ body. I‟m happy to be alive and have such incredible

       people in my life.



While Kling‟s doctors and other medical personnel during his post-

accident hospital stay are among those he thanks effusively, it was for

saving his life, relieving his pain, and for reparative surgery on his face,

rather than rehabilitation. There was no expression of sentiment on

Kling‟s part that either healthcare or rehabilitation professionals had any
role in his return to his art. On the contrary, he has focused on those

strengths of authorship and vocal expression that remained untouched by

his accident, both requiring and ultimately enabling him to excel as a

“pure” storyteller and in particular a radio artist.



Billy McLaughlin

McLaughlin is an acoustic guitarist. He enjoyed a great deal of success in

the 80‟s and then disappeared from the scene for some years, after having

developed focal or musician‟s dystonia in his left hand, which temporarily

forced him to stop playing. Dystonia is a neurological condition in which

the muscles fail to respond to the commands of the brain. It is highly task-

specific. In musicians, it typically affects only instrumental performance,

while other normal function remains. It develops in response to overuse

(Sacks 2008).



McLaughlin has since revised his technique, in a manner that he

characterizes on his website and elsewhere as having switched to left-

handed playing. This, however, is an oversimplification to the point of

inaccuracy. He certainly does not play left-handed according to any

familiar conception of what that means, although he performs on a left-

handed instrument with strings appropriately reversed and holds the

instrument in an unusual-looking variation of the familiar left-handed

position.
McLaughlin now plays exclusively by a technique accurately and widely

known as “tapping,” wherein he presses the strings at the appropriate frets

hard enough and with enough amplification to render simultaneous

plucking with the other hand unnecessary. This facilitates playing

multiple melodic lines. Like almost all guitarists who use this technique,

McLaughlin taps with both hands. What he has done to revise his

technique since becoming dystonic is to tap the simpler bass parts with his

affected left hand (apparently using only his first finger) and the more

active parts with his right, the reverse of what he had done before when

using the tapping technique. Apart from reversing the way he holds the

instrument, this may actually be most analogous to playing the piano with

crossed hands, left over right, not the norm, but something that any pianist

will encounter with some frequency.



That, however, is not the entire story. McLaughlin began his SAH set

playing, for the only time that night, right-handed on a right-handed

instrument. His first selection was America‟s “A Horse with No Name,” a

song with only two chords, each of which only required his first two, non-

dystonic, fingers. He explained to the audience that that was about all he

could still do right-handed. What makes that assertion so problematic is

that it is apparently not true.
In a video recorded August 15, 2009, at a music clinic for the Dystonia

Medical Research Foundation, McLaughlin performs “All God‟s

Children” right-handed

(http://www.youtube.com/watch?v=5vOxFc1cKc8). He does not in fact

use his dystonic third or fourth fingers, but he does far more with his

functioning first and second than he did onstage at the Guthrie. He plays a

solo and tells his students “you can play the blues with two fingers if you

have to.” Notably, Django Reinhardt (1910-53), arguably the greatest jazz

guitarist of all time, had precisely the same hand impairment, though as a

result of burn injuries, and developed an absolutely formidable left-hand

technique, though he was, of course, incapable of playing most chords that

require more than two fingers.



McLaughlin deserves great credit for having reinvented his technique, but

it is curious that he represents what he has accomplished so inaccurately.

One does not tap on the guitar left- or right-handed any more than a pianist

(with two able hands) plays left- or right-handed, as in both cases, one is

performing the same task with both hands. It is also not true that

McLaughlin cannot and does not any longer play right-handed except in

the most rudimentary way, as he said at his SAH performance. One can

only speculate as to why he chooses to represent his playing inaccurately.

It may be that he regards the characterization of switching to left-handed

play as an accurate shorthand that a lay audience would more quickly and
easily understand than the detailed description of his playing that I have

provided. (He would be half correct, in that it is easier to understand. But

it is not an accurate description.) It may also be he feels that

characterizing his revised technique as a total reversal of the way he

played previously sounds more dramatic. And it does. As we will see,

drama matters to McLaughlin.



It is a fact that much of what McLaughlin is about these days is his focal

dystonia, which looms large in his public persona. The text of his website

(http://www.billymclaughlin.com/) begins:



       Billy McLaughlin is a guitarist and composer



       For twenty years, he astounded audiences around the world with

       his complex and rhythmic music.



       In 2001, Billy was diagnosed with Focal Dystonia, an incurable

       neuromuscular disease that rendered him unable to play his own

       music.



       By 2002, Billy McLaughlin's career was over.
       In 2006, Billy began a comeback. He was doing the unthinkable -

       relearning his songs left handed.



       Billy McLaughlin is astounding audiences once again with both his

       story and his music.



The website also includes a page on “Dystonia,” which actually only concerns

focal dystonia (generalized dystonia affect much/all of the body and is not task-

specific), primarily McLaughlin‟s own case, and whose photo, interestingly,

shows him playing right-handed. (He plays in his left-handed tapping

configuration in the homepage photo.). There is also a “Musicians with

Dystonia” bulletin board that is quite lively, and a link to the website of the

Dystonia Medical Research Foundation (http://www.dystonia-foundation.org/),

whose front page has a picture of McLaughlin as part of a promotion for his video

Changing Keys – Billy McLaughlin and the Mysteries of Dystonia, which has

been shown on the Public Broadcasting System. The video is sparing on details

of McLaughlin‟s condition and his revised technique in much the same manner as

the commentary he provided with his performance and the information on his

website. McLaughlin has become deeply involved with the medical/professional

wing of the disability world. In addition to his work with the Dystonia Medical

Research Foundation, he is a recipient of the 2010 American Academy of

Neurology's Public Leadership Award.
McLaughlin‟s SAH performance, unlike Kling‟s, was unambiguously shaped by

its context. It was preceded by a video that summarized his story of tragedy and

triumph, covering much the same ground as a June 2, 2010 Reuters interview

(Ismail):



       "My hand was so contorted that I couldn't even play 'Mary had a

       Little Lamb,'" McLaughlin told Reuters about his darkest days in

       the mid-2000s. "Two of my fingers are curled up in a ball. I lost

       my record deal, my agent, my distribution deal, my marriage fell

       apart and my fan base -- I wouldn't say I lost them entirely -- but I

       just disappeared from sight."

       (http://www.publicbroadcasting.net/kwmu/news.newsmain/article

       /0/0/1658181/Arts..and..Culture/TV.film.looks.at.odyssey.of.guita

       rist.Billy.McLaughlin)



Addressing the audience between numbers, McLaughlin heightened the drama by

informing the audience that his proclivity for developing dystonia meant that it

might eventually affect his right hand as well and that thus it was essential that he

live in the moment, playing for as long as he is able. He also referred to his pre-

dystonia period as “when I was healthy.”
Readers doubtless perceive by now that I have reservations about McLaughlin‟s

act. It is not the music that concerns me from a disability perspective (although I

must confess I am not a fan), but the extreme dramatization of his -- and by

inference all disabled people‟s – lives. Such narratives of tragedy and triumph

help no one. In particular, they serve to suggest that the quality of life of people

with disabilities is so poor that – unless they can perform the kind of feat of

rehabilitation that McLaughlin characterizes as a “miracle” (“TV film looks at

odyssey of guitarist Billy McLaughlin”) – life may not be worth living at all. This

is not the attitude of most disabled people, who tend to view their quality of life

far more positively than others, especially physicians, imagine (Longmore 2003).




McLaughlin supported that fatalistic view in a 2010 interview:



       “Having a movement disorder, whether you‟re a musician or not, is very

       humiliating,” he says. “Any physical disability can be a humiliating thing

       to have, and I hid mine. I didn‟t tell people why I stopped touring; I didn‟t

       tell anybody anything. I just sort of vanished.“ (Harrison 2010)



The idea that having any disability is “very humiliating” is seriously problematic,

especially when espoused by person with a disability who acts as a spokesperson.

But McLaughlin‟s position needs to be scrutinized in particularly great detail, in
the contexts of his impairment and the manner in which he presents himself as a

person with a disability. It seems safe to say that his impairment history – which

he would more likely term his medical or health history – looms far larger in his

performances and publicity than that of Kevin Kling and at least as much as the

evening‟s third artist, Jason Gerling. But McLaughlin is by some important

standards not a person with a disability at all. Certainly his impairment is not

remotely as severe as either of the other artists with whom he shared the stage at

the SAH that evening.



While discussing an individual‟s precise impairment status is uncommon and

even discouraged in disability studies (Linton 1998), because of the fear of

individualization (of members of a minority group) and medicalization, I have

argued that such close scrutiny can be extremely important in understanding

musical cases (Lubet 2010). Unlike some other musicians, McLaughlin‟s focal

dystonia may be more than task specific. Judging by his descriptions of his

condition such as the above, it may affect more than his (right-handed) guitar

playing. But it would probably not qualify him as a person with a disability under

the Americans with Disabilities Act, even as it was amended in 2008, as it does

not appear that his impaired left hand limits any “major life activities” as the

ADA defines them:
       Major life activities include walking, seeing, hearing, breathing, caring for

       oneself, sitting, standing, lifting, learning, thinking, working, and

       performing manual tasks that are central to daily life.



Working, in the case of the ADA (and also under Workers‟ Compensation,

another important body of American disability law), does not mean working in

one‟s chosen profession or current occupation. Social confluence theory would

characterize McLaughlin as having a disability only within his chosen profession

and specifically, as he would likely admit, only as a right-handed guitarist. As

important as playing the guitar right-handed has been to McLaughlin (and, as a

guitarist with an upper limb injury, I empathize completely), it is a very narrow

confluence within which to be disabled. Like pianists Gary Graffman and Leon

Fleisher, both of whom have focal dystonia that limited them to left-hand only

repertoire (although Fleisher, whom McLaughlin consulted about the condition,

has returned within limits to two-handed playing thanks to Rolfing and Botox

treatments), McLaughlin worked when he could not play as a teacher of young

children and a church choir conductor. As previously noted, he has also

performed as recently as 2009 as a right-handed guitarist in the manner, though

without the stunning virtuosity, of Django Reinhardt.



Whether McLaughlin actually feels obsessed about his condition or not, it may

actually be more important to his public persona than his music. In portraying

himself, he uses words in a manner that vastly dramatizes his life, far more than
Kling, who has a seriously impaired left arm and a right arm that is completely

paralyzed. Virtually the first thing one learns about McLaughlin on his webpage

or in the program notes to his SAH appears is that focal dystonia is an “incurable

neuromuscular disease.” That is true enough, but terror seems to be more

important than truth as it is used here. Many conditions that are incurable are

neither health- nor life-threatening and do not prevent those who have them from

leading full, happy lives. And although McLaughlin has had less luck than others

such as Leon Fleisher with therapies, focal dystonia is sometimes treatable.



McLaughlin‟s evocation of “when I was healthy” is also problematic. Although

definitions of “health” vary radically and are the subject of ongoing debate – since

2008, BMJ (formerly the British Medical Journal) has run a blog (Jadad and

O‟Grady 2008) precisely to discuss the meaning of the term -- few would exclude

McLaughlin from the category “healthy” on the basis of his hand impairment.

Several contributors to the BMJ blog explicitly argue that disability does not

preclude health. Perhaps even more telling was a response to my own “Advocate

for Infanticide,” an address I gave to a demonstration against an appearance by

philosopher Peter Singer at the University of Minnesota, later published online by

Ragged Edge Magazine (2006):



       I am a sixteen-year-old girl with spina bifida, and I have lead [sic] a

       happy, healthy life. My doctor saved my life, and the fact that infanticide

       is even being considered being done by doctors is a crime against nature.
       How could the murder of innocent newborns ever become acceptable?!

       What kind of world do we live in? (Emphasis mine.)



McLaughlin statement that he was a likely candidate for focal dystonia in his right

hand and thus that he‟d best play now while he still can is a concern he also

expressed in a 2009 newspaper interview, subtitle “Ailing guitarist gets his second

chance with left hand” (Baenen):



       He lives with the possibility that his dystonia will migrate to his healthy

       hand.



       "You know the vase hits the floor and in that moment that it shatters and

       that sound comes out you realize, 'Oh, oh, that's gone forever,' "

       McLaughlin said. "And in my case, there's no new hand to put on. But I

       found another way around it. And that's a lesson for every area of my life."



McLaughlin‟s sense of fatalism is greater in a 2009 interview (Doyle), in which

the reporter seems to advocate for this stance:



       “Dystonia could eventually develop in McLaughlin‟s healthy hand, „which

       would probably put an end to my career altogether,‟ he said. „But knowing

       that enables me to live the best I can and appreciate the opportunity to be

       able to do it, because there‟s no guarantee for tomorrow.‟”
At the same time, it is only fair to balance my perception that McLaughlin is

selling his focal dystonia with his own explanation for his outspokenness, in the

same interview, referring to the documentary Changing Keys:



          “This documentary does not demonstrate any breakthrough cure for the

          disorder of dystonia,” said McLaughlin, recently named an ambassador for

          dystonia awareness by the Dystonia Medical Research Foundation in

          Chicago. “But it quite possibly could help people who suffer from it who

          didn‟t know they have it, like me. This awareness is where my passion is,

          and getting the information out there.”



The documentary, however, has nothing to say about either treatments or

prevention. Had I not written extensively on the condition, Changing Keys might

well have left me with a sense that little or nothing medically can be done about

focal dystonia. This, unfortunately, has been true in McLaughlin‟s case, but there

is a sizeable medical literature that offers examples of musicians who have fared

better.



Social confluence theory characterizes McDonald‟s disability status within the

popular music world in which he works as severe and even incapacitating, as a

right-handed guitarist. It is also important to consider that his music making had

much to do with the onset of his focal dystonia (Altenmüller and Jabusch 2010),
although there is also evidence of a genetic component (Schmidt, Jabusch,

Altenmüller, Hagenah, Saunders-Pullman, Bressman, Münchau, and Klein 2009.

Although certain musical habits of practice and attitude clearly have a role in

developing this condition, the protocols of popular music, largely non-negotiable,

may well have played a large part in McLaughlin‟s travails. (Altenmüller and

Jabusch (2010) offers a severe rebuke for the forms and norms of classical music

as well.) At the peak of his career, he has performing more than 200 concerts per

year (Ismail 2010), which, given the ephemeral nature of popularity and a family

to support, no apparent reasonable alternatives. As McLaughlin says in his

website (and in Doyle 2009), he had never heard of focal dystonia until

developing it, as it is rarely if ever a part of musicians‟ training (as is the case

with performance injuries in general) or culture.



But, as has been demonstrated, the story is significantly more complex than that

and not necessarily in quite the way McLaughlin tells it. It is understandable that

he felt devastated by his condition and remarkable that he has recast his

technique, though not, I think, as miraculous as the way he describes it. It is also

important to consider that his music making contributed or even caused his focal

dystonia (Altenmüller and Jabusch 2010).



As the quote above implies, McLaughlin has always had professional options

within and perhaps beyond his musical world, in the mainstream of American life,

where his impairment would be regarded as minimal in nearly all endeavors.
Given that his website describes him as “guitarist and composer” and that, like so

many pop artists, he is best known for performing original works, one might

wonder why he did not choose to focus on composition (in addition to teaching

and conducting) when he was unable to play. He could also have switched to

slide and/or pedal steel guitar or even dulcimer, far easier options than the hand

switching upon which he ultimate chose to focus.



What is clear is that currently McLaughlin‟s career is heavily focused on telling

the story of his impairment. It looms large on his website, in his interviews and

other media coverage, in the widely-shown video Changing Keys, and in his

association with healthcare organizations. McLaughlin‟s impairment is minor by

nearly all standards, except, to be fair, within the social confluence of right-

handed (non-slide) guitarists, an affiliation that understandably matters deeply to

him. But publicizing his focal dystonia is clearly also a career move, playing up

his impairment in a manner and to an extent that exceeds nearly anything I have

ever seen by any other “mainstream” artist, that is, one who works primarily

outside of disability culture venues. (The best-known disability culture musician

is probably protest singer Johnny Crescendo.) Notable exceptions are comedians

Josh Blue, Zach Anner, and (the lesser-known) Alan Shain, all of whom have

cerebral palsy and play it up for laughs (as if they had a choice, given their chosen

profession).
For McLaughlin, his disability is no laughing matter. His music is often

categorized as “New Age,” a genre not noted for its drama. It is harsh to suggest

that his cultivation of a medicalized disability narrative of tragedy, triumph, and

redemption and cure (cure only in the non-medical sense that he is able to play

again) is something he intuits is a necessary complement for the calculated lack of

emotional depth in his (and all New Age) music. But this harsh judgment may

also be true. Those who experience McLaughlin – it does not suffice to speak

only of hearing his music, as his focal dystonia video and stage patter are

impossible to ignore – will have to draw their own aesthetic and political

judgments.



Jason Gerling

The final featured artist of the evening was drummer Jason Gerling. Gerling

describes himself as a “partial quadriplegic.” I was unable to find a

straightforward definition of partial quadriplegia, but references to “incomplete

quadriplegia” on the Internet are more common. An article in Disabled World

(n.d.) states that



        The clinical term incomplete when applied to spinal cord injury indicates

        that the patient has some sensory or motor function below the lesion level.




The program for the SAH performance states that “At age 23…an automobile

accident partially severed his spinal chord and placed him in a wheelchair.”
Gerling‟s introductory video, as well as an article entitled “The Beat Goes on” on

the website of the Christopher & Dana Reeve Foundation (2010), list his severed

vertebrae as C6/C7, as well as the cause (an auto accident) and precise date of his

injury, medical information of a nature unlike anything one would receive/would

have received at a Ray Charles or Stevie Wonder concert or in any of their media.

Nor would such data be presented at a disability culture event. It might, though,

be of interest to the SAH audience as physicians and therapists, although it‟s not

clear how it would help to enlist the arts into the service of healthcare. More to

the point, Gerling cannot use his legs to play the bass (or “kick”) drum or the

high-hat cymbal. If there is any limitation to his use of his arms, as the term

quadriplegia most certainly implies, there was no evidence of it in his drumming.



On Gerling‟s impressive, self-produced, autobiographical DVD Between the

Wheels, he is quite specific about his mobility (and also his medical diagnosis).

He confirms that, with occupational and physical therapy, he has full use of his

arms and enough lower body mobility to stand and walk a few steps with an

assistive device, but requires a wheelchair for any practical travel of any distance.

He cannot, however, use his feet to play his drum kit. While this may seem a

foregone conclusion, it is not. For example, the classical pianist (and composer

and disability studies scholar) Stefan Honisch has spina bifida. We uses a

wheelchair and cannot walk, but is able to pedal his instrument. Mobility is a

complex affair and even in a field that leans so strongly towards social
constructivism as disability studies, a detailed understanding of impairment may

be essential to developing adaptive design and technology.




Like McLaughlin, Gerling preceded his performance with a video (I believe it

consisted of excerpts of Between the Wheels) that offers a narrative of the kind

that news media love. Most people would call it “inspirational,” a term widely

disliked in disability studies circles. (It seems that only disability stories that can

be framed in such a manner make it to electronic media.) But Gerling only uses

that word twice, with a strong preference for the word “encouragement,” a

difference that is more than merely nuanced, in that one of the key themes of the

video is the importance of mutual assistance. This is not a story of solo heroics

and in addition, Gerling constantly reminds the viewer that he intends to place

himself in the service of musicians and others with disabilities and anyone else he

can assist and encourage. And Gerling‟s story and the manner in which he tells it

differ from McLaughlin‟s in other significant ways.



While McLaughlin‟s story is not precisely one of illness and a miraculous cure, it

does tell of a miraculous recovery (Ismail 2010), in that he claims to have

regained his ability to play via a nearly unimaginable effort. In an article in

Disabled World (Weiss 2009), guitarist



        “Leo Kottke of Minneapolis stated that this was a task similar to, „trying to

        breathe through your feet. It's exactly that hard.‟”
McLaughlin‟s describes his decline during the onset of his focal dystonia as

precipitous:



       I lost my record deal, my agent, my distribution deal, my marriage fell

       apart and my fan base -- I wouldn't say I lost them entirely -- but I just

       disappeared from sight.



And although he has said that



       “Having a movement disorder, whether you‟re a musician or not, is very

       humiliating.”



His humiliation seems to have ceased upon his return to professional

performance, despite having had no success with treatments that have worked for

others such as classical pianist Leon Fleisher (Weiss 2009).



In constructing his media image, Gerling is arguably as much about his disability

as McLaughlin. The website of his corporation, Jammin‟ Grooves (which shares

his own initials, JG): Encouragement through the Power of Music

(http://www.jammingrooves.com/home/about.html) is headlined:
       “Think outside the box, look between the wheels, and provide an

       opportunity for a person with a disability.”

                                  --Jason Gerling, quadriplegic drummer



There are details of Gerling‟s self-representation as well as his management of his

career that differ significantly from McLaughlin‟s. It needs first be said that,

social confluence theory aside, there are impairment conditions that would be

regarded as disabling in (nearly?) all circumstances. Paralysis such as Gerling‟s

falls into that category as surely as McLaughlin‟s focal dystonia does not. Its

impact upon many “major life activities” (to quote the language of the ADA) is

surely significant and its affect on everything a drummer does – not only playing,

but managing his equipment, and traveling even locally – is considerable, as

Gerling explains.



Given Gerling‟s major impairment condition, it is to his credit that he does not (so

much) traffic in narratives of tragedy and triumph. His biography tells that



       …when a 1994 spinal cord injury decimated his musical dreams and put

       him in a wheelchair, it was ENCOURAGEMENT from friends, family

       and especially God that empowered Jason to bounce back. RESILIENCE!

       (Emphases in original.)
Religious rhetoric aside (McLaughlin also speaks of “praying” (Ismail 2010) and

Kling “still feel[s] blessed” (Kling 2001), what strikes me, though, as both more

realistic and more disability-positive, is the absolute emphasis on

“encouragement.” The support of family and particularly parents has been

referenced repeatedly in the memoirs and biographies of such important

musicians with disabilities as Thomas Quasthoff (2007), Ray Charles (Charles

and Ritz 2003), Horace Parlan (Parlan, Horace, McGlynn, Pedersen, Parlan,

Norma, and Zaentz. 2002), and “Little” Jimmy Scott (Ritz 2003). (A notable

exception is songwriter Jerome “Doc Pomus” Felder (Halberstadt 2008).) Gerling

references all the help he has received constantly and the list of

acknowledgements at in the closing credits of Between the Wheels is formidable.



If McLaughlin‟s rehabilitation was anything other than a lonely solo effort, none

of his media appearances give any indication of encouragement from any quarter.

This is not beyond the range of plausibility, though it is hard to accept. But he

writes only of the dissolution of his marriage and the erosion of his fan base in

this period (Ismail 2010). This not only paints a picture of lonely heroics, it subtly

medicalizes his life, by making his disability an individual “case” rather than a

social concern for a community of people with disabilities. On Gerling‟s DVD,

while there is some heroic rhetoric (made a bit harder to take because Gerling

serves as his own narrator), he is emphatic and even relentless about the need to

reform the profession of music to enable artists with disabilities to work. This is

quite different from a request to hail the conquering guitar hero.
In Gerling‟s case, there is also an element of determination to prove wrong the

doctors who told him he would never play again. Both in concert and on his

video, he singles out for approbation that moment in rehab when he was told he

would never play again. (He says it was “probably” on the video.) With

McLaughlin having received the same grim prognosis from his physician (and

also saying so at the Guthrie) and both artists rehabilitating their performance

skills without the assistance and perhaps even against the advice of medical

professionals, it is a matter of speculation as to why they perform for

organizations like SAH. It is interesting that Gerling dedicates Between the

Wheels not to a medical professional, but to the police officer whom he say saved

his life (and who later died in the line of duty). I left the event thinking that the

arts do far more for healthcare than healthcare does for the arts. Both artists also

support organizations that seek cures for their respective impairments, the

Dystonia Medical Research Foundation, and the Christopher and Dana Reeve

Foundation, although neither seems to dwell on this, unrealistic as it is at the

current time, as part of their personal vision or goals.



Although Gerling‟s Jammin‟ Grooves

(http://www.jammingrooves.com/home/about.html) is a profit corporation that

began by producing industrial soundtracks (with Gerling as both drummer and

composer) and voiceovers for an impressive group of companies, Gerling has

expanded its mission to include as its stated foremost concern advocacy for
people, in particular musicians, with disabilities. In addition to playing and

composing, he lists his other activities as an inventor and speaker. With regard to

the latter activity, I have found no evidence other than a few still photos in the

video (of occasions and organizations that cannot be specifically identified) that

Gerling has yet been engaged as a motivational lecturer. His overwhelming

emphasis on studio work, despite his stated desire to perform live, may not be

entirely by choice. His website lists no up coming or past live performances.

Like his speaking appearances, there are only photos of appearances at disability

functions. Further, he protests against the de facto hiring policies of the musical

profession in Between the Wheels. (Lubet 2004 includes a discussion of the

prejudice the classical music world has against disabled bodies on stage.)x



Gerling‟s major inventions are two. The more prominent, chronicled in much of

his media and demonstrated in his SAH set at the Guthrie, is a breath-activated

digital trigger that enables him to couple and uncouple pieces of his drum kit to

another. (He also does this with manual switches.) Although, as Gerling says,

there are many possible configurations, he uses it to trigger his kick drum with

one of his cymbals. Although he claims on his DVD that the technology enables

him to sound like a four-limbed drummer, my own close listening indicates that

that effect derives more from his having very good hands, a fast, busy style, and

strong musicality. In addition, once one is aware that he is using the triggering

device, it becomes noticeable in that the bass drum is always heard in rhythmic

unison with the same cymbal, although the cymbal can also be uncoupled by the
trigger and played alone. (I am reminded of how once one knows of guitarist

Django Reinhardt‟s left-hand impairment, it becomes obvious when playing

through his transcribed solos, a subject I discuss in Lubet 2010.)



My University of Minnesota colleague Guerino Mazzola, a jazz pianist,

mathematician and computer scientist with several impressive composition

programs to his credit, attended the performance with me and called the triggering

device “primitive.” Although it is clearly at an early stage, I find it ingenious in

the context in which it is used and believe it has potential. As an invention,

though, it is foremost a cobbling together of several other devices.



Gerling‟s breath-activated device is an example of a “puff and suck” controller,

typically used by people with little or no upper limb function, rather than

drummers whose legs cannot play and whose hands are otherwise occupied. In

that more normative application, it is employed by in the studio of the Vancouver

Adapted Music Society (http://vams.org/), whose technology is more established

(VAMS was founded in the late 1980‟s) and considerably more extensive and

advanced than Gerling‟s. At VAMS, the controller enables people with very

significant mobility impairments to operate all the equipment in the studio.

Artists who cannot perform in real time owing to their impairments are able to

compose. One of VAMS‟ two co-founders is drummer Dave Symington.

Symington has considerably less use of his hands than Gerling and uses self-
invented Velcro gloves to hold the sticks he uses to play an all-electric Roland

drum set.



While Gerling seems unaware of Symington as a drummer or of the VAMS studio

and its highly sophisticated technology, he is willing and able to credit his

forbearers. (His video does, however, make it clear that he has rejected electric

drums as an alternative because he does not like the sound.) On both Between the

Wheels and on "The Jason Gerling "ENCOURAGEMENT! Pay it Forward"

Network," his Facebook page, he declares Def Leppard‟s amputee (one-armed)

drummer Rick Allen “one of my fav‟s.” Allen, arguably the most famous

amputee musician in the world (as well as one of the world‟s most famous

amputees regardless of field), uses a related, but more intricate technology (as it

must activate more instruments by foot) to adapt to what is likely an even more

daunting impairment for a drummer. Gerling‟s reference to a disabled drumming

idol is another example of Gerling exhibiting greater largesse than McLaughlin in

his narrative, which never references such hand-impaired guitarists as Django

Reinhardt, Jerry Garcia, or (former Bob Dylan lead guitarist) Bruce Langhorne.

Indeed, the acknowledgement of the universal human state dependency and the

consequent necessity of collaboration is one of the gifts the disability community

has given the world.



Gerling made less reference at SAH to his other, lower-tech innovation, a drum

kit whose pieces are locked a platform in a precise, wheelchair-friendly setup, for
ease of setup and travel. (The kit combines acoustic drums and cymbals with an

array of assistive technologies and can be interfaced with his Macintosh laptop.

Its layout is also wheelchair-appropriate and he uses two high-hat cymbals, open

and closed, to simulate the effect of the foot pedal.) While most of the emphasis

in adaptive technology for musicians with physical disabilities has involved actual

performance and composition, cartage and travel present additional challenges.

For some musicians these tasks are likely more daunting than playing.



What is most impressive about Gerling is not the sophistication of his inventions.

It is that Gerling proclaims (at SAH, on his video, and on CNN (Welch 2010))

that he will not patent his invention, because his intention is to share it with

anyone who needs it, that one should not charge for encouragement. His CNN

interview includes a number of testimonials from drummers with disabilities who

returned to playing because of Gerling‟s accomplishments.



Finale

Kevin Kling is also a musician. The final set of the performance began with all

three artists on stage. (The second and final number featured McLaughlin and his

band in one of his 80‟s hits, joined by Gerling.) The question of what Kling

might contribute to a musical number was answered by his playing the

didgeridoo, an Australian aboriginal relative of the trumpet and trombone that

requires little (perhaps for stabilization) or no use of the hands. (Kling had lived

in Australia for a time.) Kling also plays tuba and euphonium (tenor tuba) in the
trio Bad Jazz, but I think the choice of the didgeridoo was partly for laughs. The

humor derived from a combination of its unfamiliarity, unusual appearance,

ability typically to play only one very low pitch (as Kling did, though some

players can get an additional upper overtone), and perhaps also because Kling

could play it essentially hands-free. The instrument may also have been chosen in

part because of the affinity between “world music” and McLaughlin‟s New Age

style. Had Kling played tuba, the choice of instrument would likely not have

seemed funny (although apparently his band Bad Jazz is). Rather, it might have

situated him as a person who uses his one functioning, if impaired hand to

admirable use, rather than as a person who can barely use his hands at all and has

little choice but to play an exotic instrument with a range as limited as his upper

limbs. Kling was, however, given the opportunity to “get in the last word,” his

didgeridoo, hard to make out throughout most of the performance, permitted to

ring out after all the other musicians had stopped.



Although Kling‟s didgeridoo playing may have been included in part as a joke

and partly for the warm, fuzzy feeling of having him on stage with McLaughlin

and Gerling, I also thought of it as a lesson in what can be accomplished with

musicians with disabilities if they choose their instruments carefully and, in some

cases, supplement with adaptive technology. In that sense, he was in good

company onstage. There is nearly always an instrument a person with a disability

can play in real time, except in cases of extreme mobility impairment. Many who

cannot play, can compose given the appropriate technology, as they do at VAMS.
There has yet to appear a comprehensive compendium of instrumental resources

for people with disabilities, but it is a project that cries out for an author or a team.



Despite his youth, it seems that few have spent more time than Jason Gerling

asking whether the arts are disabling or enabling of people with impairments.

Like a good social constructionist, he proclaims his profession badly broken with

regards to its resistance to employing musicians with disabilities. Likewise, he is

not hesitant to object to the lack of encouragement he received from medical

professionals for returning to music. Like a music therapist, he asserts a healing

power for music, although he means this in a psycho-spiritual, rather than a

medicinal way (although he would, I think, be enthusiastic about the use of music

therapy in rehabilitation). While he appears unaware of VAMS, I am sure he

would agree with its goal, very different from the extramusical didactics at the

heart of music therapy, of enabling people with disabilities to participate in music

making for the sake of musical expression and professionalism.



While Gerling makes himself out not to be the kind of “island” that McLaughlin

portrays himself as, it is possible that others may see that kind of loner in Gerling

and perhaps even be a bit intimidated by his range of talents. In the years

following his paralysis, he gave up music and became a very talented graphic

designer. It was through his connections in graphic design that he originally

returned to music, not as a drummer, but as a composer, only later deciding that

he could play the drums again. He has extraordinary audio and visual
technological skills, which may be witnessed in the closing credits, where it is

revealed that Gerling at least had a hand in virtually every aspect of production

and was almost totally responsible for the music and sound, with only an

occasional guest instrumentalist contributing. This demonstration of his multi-

dimensional artistic prowess unfortunately serves to reinforce Gerling‟s complaint

that (almost?) no one will hire a disabled musician (such as himself), who thus

has little choice but to go it alone. While Gerling clearly believes that music has

been an enabling force in his life – that he has found means to accomplish all he

desires in music and to function at the top levels of his profession – the

encouragement he so appreciates and so champions seems neither to have come

from the arts (music, to be precise) or healthcare.



Conclusions

Only a brief recapitulation of the discussion of the three disabled artists who

performed for SAH at the Guthrie is necessary. One thing that is clear is that

disability is prominent in their performances and other aspects of their careers

mostly through personal narrative. Autobiographical storytelling is, of course, at

the core of Kevin Kling‟s work. But for McLaughlin and Gerling it is a very

detailed program note that they seem to take everywhere via both their own media

and their interviews and other journalistic accounts. Impairment appears only in

subtle ways that require close, informed listening to McLaughlin‟s or Gerling‟s

recorded performances. The degree to which impairment consumes the attention

of audiences to an audio-visual (live or recorded) performance is a tough question
to answer. By now, awareness of impairment is unlikely to be an overwhelming

presence in performances by such “mainstream” disabled musicians as Itzhak

Perlman or the late Ray Charles. But it is nearly impossible to avoid in

McLaughlin or Gerling‟s live shows both because of the impact of their

impairments on how they play their instruments and because the artists insist on

foregrounding their conditions via the integration of personal narrative.

Although Gerling barely has a live performing career, McLaughlin‟s is served

with a dollop of highly personalized narrative, with such an emphasis on the

“personal” – that is, that individuated and thus medical – that any potential value

for political mobilization is unlikely.



That Gerling has no live performing career and McLaughlin has an active one

indicates something else. In Between the Wheels, Gerling is quick to note that he

has rarely if ever seen a working musician with a physical disability, by which he

clearly means a mobility impairment. (In this, he is referring to popular music

and jazz only, unaware of classical musicians such as Itzhak Perlman, Rachel

Barton Pine, Thomas Quasthoff, Jeffrey Tate, James DePriest, or Adrian

Anantawan, or is only concerned with performers whose impairments relate

directly to their playing (and also unaware of Anantawan, who holds his violin

bow with a prosthetic attached to his right arm).) He may or may not have been

aware that his characterization, like the ADA interpretation of what constitutes a

disability, excludes his collaborator for the evening, Billy McLaughlin. It may

also indicate that, no matter how extensively McLaughlin incorporates his illness
and recovery narrative into his act, his audience and professional colleagues are

not offended by his appearance as they seem to be by those more significantly

impaired musicians whom they (with remarkable, mostly world-class, virtuosic

exceptions, such as mentioned above) refuse to gaze upon or hire (Lubet 2004 &

2010; Siebers 2010 includes a relevant discussion of “human disqualification” of

people with disabilities.).



With an impairment that is minor except when he is playing, an epic narrative that

he has retold many times, and a condition that medical evidence indicates was at

least partially brought on by playing and practice, McLaughlin is an almost

entirely able-body man every but in the social confluence of music where,

however, he has leveraged his impairment to professional advantage in a

resurrected career that now, understood realistically, combines (non-fiction)

storytelling with music. Disabled everywhere they are, Kling and Gerling are, by

their own accounts, enabled by the arts, their impairments having focused them

and thus contributed to their virtuosity.



While Kling enables himself onstage, transforming a healthcare event into a

moment of disability culture by the power of his authorship and performance,

demanding, albeit in a manner we in the Upper Midwest call “Minnesota Nice,”

that he be accepted as richly, fully human. His impairment is integrated into his

story when and to the degree he chooses and only after he has reached a point in

his performance that such intimacy is appropriate. I think Gerling might actually
be better served in his cause (and perhaps his drumming career as well) were he to

attenuate his storytelling in his live shows, particularly the prefatory big screen

video, which becomes an emotionally overwhelming part of the message by virtue

of its size alone. His accomplishments would be obvious enough simply

watching him play, with perhaps a little stage patter about his adaptive

technology, enough to sell videos and otherwise inspire his audience to further

research. If, as he states, one of his goals is to perform and tour live with other

(able-bodied) musicians, it might be beneficial to let his drums talk more.



There remains the important question of the value for artists with disabilities of

venues such as the SAH, environments in which disability is foregrounded but

medical and other helping professionals are calling most in not all the shots.

Artists need to work and want to appear before appreciative audiences. While it

is unwise to generalize and tricky and likely impossible to attempt to divine

artistic merit from social, cultural, or political context and values, there are times

when at least some artists question the degree to which they are appreciated for

their creativity, expressiveness, and discipline versus the demographics of their

bodies and life stories. While violinist Adrian Anantawan has a unique story, one

that others love to recount and hear – I chose his image for the cover of my Music,

Disability, and Society -- his career trajectory has in most respects been that of

any young concert violinist, playing the same auditions, attending the same (that

is, the best) schools, and performing the same repertoire. Although he is fiercely

dedicated to advancing the cause of people and especially musicians with
disabilities, he has stated that he would prefer to play more engagements as a

violinist, rather than as a “disabled violinist.” He has also noted that in disability

venues such as VSA and the Paralympics (he has not performed for SAH), he is

often asked to perform display pieces that show off more technique than musical

expression and insight. Adrian and I agree that while part of this repertoire

selection likely owes to the tastes of an audience that is not accustomed to

weighty classical music, surely there is also an element of spectacle, the idea that

the disabled person “can really do that.”



As stated previously, the full house at the SAH included almost no visibly

disabled people. Almost everything about the event was geared toward “wow, he

can really do that.” Notable exceptions, perhaps even signs of resistance to a

professional “helping” establishment with a mixed track record and little interest

in power sharing, were Kling‟s set, which much resembled others of his that I

have heard, and the statements by McLaughlin and Gerling that they were both

told by their doctors and therapists that they would (probably) never play again.

Their resurrected musical careers owed nothing to the healthcare establishment,

other than a desire to prove their doctors and therapists wrong, their musical

rehabilitation accomplished with homemade techniques and inventions.



It is not clear what benefit such events offer to healthcare practitioners, apart for a

kind of bonding exercise whose potency might have been diminished had the

audience listened carefully to the complaints about their uselessness from the
musicians onstage (the discontent is also registered by Gerling in Between the

Wheels.). McLaughlin has also performed for the American Neurological

Association and the Dystonia Medical Research Foundation and takes his

relationship to the medical world seriously. If that is in part (or entirely) as a

source of gigs, that is simply the business that he and his colleagues (and I) are in.

But he is also by all accounts sincerely engaged in dystonia as a cause.



An additional question that arises from such events is the source of the interest in

the work. Is it to be received – and judged, because that is how performances are

absorbed in the West -- simply as a performance, with perhaps a unique

demographic alignment of its artists (and audience)? Or is it a “disability” or

“healthcare” event to be valued and assessed according to different or hybrid

criteria? This dilemma of divided loyalty is hardly unique to disability arts. I

have attended a number of concerts with Holocaust themes. I am troubled that

audience is asked (implicitly, by the venue, an unembellished concert with

normative protocols) “just to listen” as if the emotional overlay of six million

hideously murdered were not an issue. Simultaneously, they are reminded by the

program notes (written and occasionally oral) of the tragedy that is being invoked.

Music that is not great (but might deserve a hearing on other grounds, such as

commemoration or education) is implictly imbued with the greatness that arises

from the calamity with which it is associated (either as an inspiration or because

the composers were among the murdered).
The work performed at the SAH was all of professional quality technically. But

the disability narratives of the musicians lent the event an emotional resonance

that, analogous to Holocaust concerts (in form, not tone), made normative arts

appreciation -- with some impartiality toward the subject matter and an emphasis

on the quality of the execution -- impossible. While conferees clearly received

the event enthusiastically, apparently as if it were like any other great concert, I

found it impossible. (That I am no fan of McLaughlin‟s and that Gerling played

along with recordings of synthesized tracks did not help.) In addition to the

cognitive dissonance between the manner in which healthcare failed the musicians

and the sense of the finale‟s standing ovation as in part audience‟s self-

congratulation, there was a faint if unmistakable aura of medical gaze and

enfreakment. This was in part encouraged by McLaughlin‟s hyperbole and

Kling‟s selection of the hand‟s free didgeridoo over the tuba. A bit too much

“wow.” But for the most part it was the disabling nature of the venue itself.



Other disability performance events sometimes showcase amateur and student

achievement. It makes sense to make those distinctions clear, as they would be in

other contexts. It is not clear to me that, for example, that VSA always makes this

distinction. For a world-class soloist like Adrian Anantawan, much of whose

work is in such venues, the failure to distinguish can be a liability that sells short

the artist‟s ability.
It is sometimes the case that arts presented to an audience with a strong

demographic profile, like the SAH, may contain rich cultural nuances that would

be lost elsewhere. This is clearly the intent of disability culture presentations,

whose producers, artists, and audience are dominated by people with disabilities

and their allies. It was not the case at the SAH performance and it is doubtful that

any performance produced by that organization or any with a related mission

traffics much in such coded discourse.



Only Kling‟s art, his stories, as distinguished from the backstories of McLaughlin

and Gerling, included explicit disability references. But Kling is nothing if not

lucid and plainspoken. His storytelling is certainly disability culture by virtue of

its content and, though it would surely be well-received at a disability (as opposed

to a healthcare) event, there is a valuable lesson to be learned from his ability to

communicate across a broad demographic. The end of disability, as it is defined

by the strict social constructionists within disability studies – as oppressive praxis

against people with impaired bodies and minds – is dependent upon those who,

like Kevin Kling, are able to make others understand and even like it. This work

will be better accomplished by disabled artists demanding access to the world of

the arts, and by telling their stories accessibly as emblematic of a community,

rather than as isolated, medicalized, potentially tragic “cases.” This may for some

be as simple as showing up and demanding to be heard.

				
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