Beautiful Progress to Nowhere

by Joseph Grigely

I’m not a specialist in the field of disability studies; but, being deaf, and an artist, and an academic (I teach visual and critical studies at an art school), I am often asked my thoughts about disability and art by disabled artists. Are disabled artists ‘ghettoised’? Offhand, I can’t really say I know the answer to this. It is a question that feels familiar from discussions about race and gender in the 1970s. But it’s not quite the same question because of the complexity of disability: disability transcends both race and gender, it transcends religion and national origin, it is visible and not visible, and where it is not present it is always latent. Disability is not just an identity but a legal ontology, and the conditions that define a person as disabled are themselves unstable – at least in the USA, where I live.(1)

It could be argued that disability theory has its own ghetto in academia – most disability studies programmes are linked to programmes in pathology and rehabilitation, not culture; the first American PhD in Disability Studies is based within the College of Applied Health Sciences at the University of Illinois. This is almost inevitable because disability is, by definition, a study of human pathology, not culture. When we start talking about disability and art, the disability may or may not be relevant, either to the art or the artist, and so it is hard to generalise about it.

What I can do is offer some empirical observations that derive largely from my experience as an artist and academic over the past 20 years. Perhaps this will be useful as a way of understanding the complexity of the relationship between art and disability, and the means by which art is disseminated in culture. Dissemination is to me the critical issue, as it involves not just the physical materialisation of art before an audience, but the ways in which the body of the artist becomes, intentionally or not, part of the body of the work. Despite the fact that disability is socially ubiquitous, serious discussions about disability in relation to body criticism and cultural theory are relatively recent. In 1998, the Michigan Quarterly Review, which is an academic cultural quarterly, produced two special issues entitled ‘Disability, Art, and Culture’. In 2006, the Journal of Visual Culture likewise produced a special issue devoted to disability and visuality. Both efforts were to some extent a breakthrough in terms of bringing disability culture to a larger and more mainstream academic audience. Serious group exhibitions that have disability as a subject, whether literal or implied, have been less successful: in 2005, the University of California at Berkeley organised an exhibition and symposium entitled Blind at the Museum, but the reach of both was mostly within the space of the disability community. Ine Gever’s wonderful exhibition Niet Normaal · Difference on Display, which was initially shown in Amsterdam in 2009, was rejected by several American art museums, even those supposedly dedicated to ‘exposing and challenging some of the inequities that exist in the contemporary world’, as the Yerba Buena Center for the Arts in San Francisco describes itself. Major museums have a long history of staging exhibitions that explore race and gender – such as the Whitney’s Black Male exhibition in 1994. Yet, to my knowledge, no major American museum has hosted an exhibition that overtly addresses disability as a subject. Does this suggest that while all identities are different, some are more different than others? Identity is not an easy subject; there’s a big difference when predicating difference on the basis of the artist or the basis of the work, and it is especially complicated when these identities are imbricated. This is what makes Niet Normaal such a compelling show: the artists are both disabled and not, and the catalogue is not always explicit in distinguishing between the two – since one of the questions the exhibition poses is: ‘What is normal?’ – and, as Georges Canguilhem first wrote in The Normal and the Pathological (1943), illness and other pathological aberrations are normal.(2) What, then, explains this resistance to mainstreaming disability as a subject?

Part of the problem, I feel, relates to how disability problematises the status quo of both disciplinary practices and everyday life. It refuses to fit into neat compartments. Let me illustrate this with a story.

Several years ago, the postman attempted to deliver to me a certified letter that required my signature. Being deaf, I could not hear him knock at the door. He did, however, leave a note indicating that I should contact the post office. The next day I drove to the post office, where I explained that, although I was deaf, my door ‘bell’ was connected to a flashing light, and if the postman were to push the button rather than to knock, I would in turn see the light flash. It’s a very simple apparatus. The clerk said she would write a note about this and give it to the postman so that he would know what to do. The next day the postman arrived, pressed the door bell button, the light flashed, and I went to the door. With unexceptional efficiency the postman handed me my letter. Attached to the letter was the note the clerk at the post office had written for the postman. It was written on a piece of yellow paper. The note said: ‘This customer is DEATH!!’ It did not say ‘deaf’. It said DEATH. In block capitals. This customer is D-E-A-T-H, exclamation point, exclamation point.

It is a revealing mistake, a telling misspelling. In The Psychopathology of Everyday Life (1901), Freud calls slips like these ‘a means of self-betrayal’. The private self, the one that speaks for all, betrays the public self, the one afraid to speak at all. Of course, the note was written, not spoken; but it was written as though it were spoken: it is something that lies between speech and writing. One day, when I describe the scenario to my therapist, he is unsurprised, if not also unperturbed by the error, or even by the emphatic nature with which the word DEATH is inscribed, and reinscribed, and capitalised and exclaimed. ‘But of course,’ he tells me: ‘You are death to them. You force them to change their ways in the process of addressing your needs. They must go out of their way, alter their path, push a button instead of knock on your door. You cause trouble.’

He was right, of course; those who are disabled have this way of transgressing the equanimity of social life. And, in certain circumstances, culture as well. In 1978, the American playwright Ron Whyte established the organisation A.N.D.: The National Task Force for Disability and the Arts. The acronym A.N.D. stood for: ‘Arts Need the Disabled’, which inverts the usual therapeutic approach that art is ‘good’ for disabled people. Whyte put together a Board of people close to him who were active in the art world (they included the critic Gregory Battcock and Fabiano Canosa, a film programmer at Anthology Film Archives). It was a bit of a DIY operation: Whyte, Battcock, Canosa and the Executive Director, Paul William Bradley, all lived at 317 W. 99th Street in New York. A.N.D. was founded primarily to promote the work of disabled artists, to provide role models and to raise the public profile of disabled artists through selective special projects, which included, among other things, lawsuits against public theatres that were not accessible to people who used wheelchairs. The organisation never quite realised its full potential: there was never enough money or enough time, and Whyte died in 1989 from circulatory complications resulting from his prostheses. What’s important to me is that there is a meaningful legacy in A.N.D.’s premise that the arts need disabled people; but it’s not clear what exactly defines this need. Is it because difference is ‘good’? Or is it because the experience disables those who interact with us, thereby rewriting the tacit rules by which we share space together?

Let me explain this with an example. Being deaf, my conversations with people who do not know sign language are generally conducted in writing. In such a situation, when I ask someone to write down what they are saying, my request functionally disables the normal channels of communication for the hearing person, so that that person, not me, is ‘disabled’ by the encounter. The usual rhetorical flourishes of speech serve no purpose; the individual becomes mute and must then invent a new strategy to communicate – a strategy that typically combines writing and drawing and gestures of the body.

Of course, in a situation like this the hearing person is not disabled in the same way as we consider a legal definition of disability; yet, it shows just how an anthropology of disability might reveal the ways we share space, and how one cannot predict the conditions under which this sharing might manifest itself. There’s an awkward beauty in this unpredictability, because it also has a way of bringing out the possibilities of the human imagination. And this is something that is good for both art and arts institutions.

At this point, it is worth mentioning that my discussion begs the question as to what I mean by ‘art’ – there’s no single ‘art world’. I can only discuss in this context an art world that is defined by certain exhibitions, certain institutions and certain curators. These points of contact circumscribe a necessarily incomplete and fragmented totality that makes up an art world with which I am familiar. When I go to see exhibitions in New York, I regularly go into some galleries, and not others – it’s not just work I ‘like’ that I seek out, but work that complicates the question of contemporary relevance, and does so in a way that is aware of the continuum of cultural history. Like Walter Benjamin says in his essay ‘Unpacking my Library’ (1931), we construct a world of familiarity based on concrete experiences with the material realities of cultural production. The result is going to be different for every individual and, for this reason, I can’t say I know much about disability art as a genre. Where does one place in the scheme of things work by mouth and foot painters? Work by developmentally disabled young adults? Work promoted by institutions like VSA: The International Organisation on Arts and Disability (which until recently was called Very Special Arts)? For some people, ‘art’ is a modest yet important mode of expression that sometimes transcends language; for others, it is in fact their only means of self-expression. Art is catholic in its reach and in its place within culture as both a commodity and a mode of human expression, encompassing as it does the broad diapason of human existence.

As an artist, part of my job is to see the work of other artists, as much and as often as possible. Over time, I have seen various artists represent disability in their work, and do it well, despite not being disabled or not making it part of their public persona (I am thinking here of Jocelyn Moorhouse’s film Proof (1991) and Les Levine’s installation I Am Not Blind (1975–6), as well as work by Marc Quinn, Javier Téllez and Danica Dakic). Similarly, there are artists who occupy an uncertain sense of place with respect to physiological difference – they may or may not be disabled in the usual sense of the term, but their work manifests a subtle and understated evocation of the way difference can be enabling instead of disabling (I’m thinking of the nuanced, detailed form of everyday looking – Norman Bryson calls it ‘rhopography’ –that is omnipresent in the work of James Castle). There are also artists whose physical disabilities seem not to relate overtly to their work – and I hesitate to name specific artists, for the simple reason that their disability is a private matter – if it's not part of their work, it’s not part of the public consciousness as part of their work, or it’s not intended that way.

Yet, eventually and inevitably, the private becomes public: artists travel to install shows and to give talks, and so the notion of what constitutes a public oeuvre is very porous. It’s not just about the ‘art’ but, increasingly, about the public presence of the artist, and this is where the body of the artist becomes part of the body of the work. Making art and being an artist are not the same thing. Making art is a very intense pleasure. It’s just you and your medium. But being an artist is largely about bringing work to the public. It means interacting with gallerists, curators and others in the profession on a constant basis. It means phone calls and conversations and meetings and site visits and airports and hotels and installations and openings and dinners after the openings. It means, inevitably, becoming an activist on behalf of yourself, in order to gain reasonably accessible working conditions. The art world never lets you forget your difference: you are constantly subject to the gravitational pull of rationalising about it.

It’s a complex entanglement that can, at times, create awkward situations. This happened to me at the Whitney Biennial in 2000. A couple of weeks before the opening, I asked the exhibition coordinator if the Whitney would arrange for a sign-language interpreter for the opening reception. But the coordinator replied to my request by saying that the exhibition was going over-budget so there was no money for an interpreter and that, in any case, I hadn’t written into my budget the need for an interpreter. Sorry, she said. So I sent an e-mail to the Director of the Whitney, asking if he’d please release some funds for an interpreter for the opening – and he replied that I shouldn’t bother him with this, and should instead take up the issue with the curator. So I wrote to the curator, who in turn explained that the Whitney had been so accommodating concerning my installation (I had requested a long flat wall instead of a corner for my work, and the Whitney had agreed) that it was unfairly demanding of me to also ask for an interpreter. Despite further entreaties, the Whitney refused to come through and I had to arrange for my own interpreter. What made this awkward was the repercussions that followed: the curator and I haven’t spoken since the incident. Perhaps it is fair to say that the Whitney had little precedence upon which they might base their response to my request; there just aren’t enough disabled people in the world of the Whitney to make this experience a familiar one.

Requests for access also catch people off guard. When the platform for the exhibition Utopia Station was being reconstructed for Kunsthaus Munich in 2004, I asked the installation crew to make it wheelchair-accessible. The platform was a wooden structure – part stage, part sculpture – with multiple levels, and my own small utopian desire was to make part of the platform accessible. But when I arrived in Munich, I discovered this was not the case: the head of construction informed me that, after serious consideration, there was concern that people would trip over the wheelchair ramp, and so it was not built.

I suppose one could describe this situation as both plausible and pathetic. Over the years, I have slowly learned that there is a real and manifest fear that people hold towards those who are disabled. Part of the dilemma is that those who are disabled have a very powerful position in any social situation – by default, a new dynamic must be built – and this tests the flexibility of both individuals and institutions. Additionally, disability is always latent, always potential, and trying to get people to embrace disability means trying to get them to embrace what they fear. Julia Kristeva has written about how disability creates anxiety among those who are not themselves disabled.(3) And anxiety leads to complicated emotional reactions that are not always rational. Not long ago, there was an article in a Chicago newspaper about a young boy who used a wheel chair and who lived in a high-rise condo. The directors of the association that managed the building stipulated that the boy could not go through the front entrance because it was said that his wheelchair would damage it. He was consequently forced to use the rear door near the rubbish bins every time he went in and out of his building. Ultimately, he had to sue the association to obtain the right to use the front door. This is not simply a story of good triumphing over bad. It’s actually a very complex story about complex emotions. One artist who uses a wheelchair told me that he’s seen a lot of restaurant kitchens over the years, because often the only accessible way into a restaurant is through the kitchen.

And how does an artist who uses a wheelchair get inside the galleries? Especially emerging galleries, which are more likely to offer exhibition opportunities for young artists? Many such galleries, in New York in particular, are located in inaccessible buildings. A major dilemma facing artists who are disabled is their access to programming: to talks, to films, to performances, to exhibitions. Seeing art matters, and matters a lot, because it's about a process through which artists educate themselves, network, and establish professional relationships. One can't grow as an artist by way of frieze and Artforum and the Internet; one needs the experience of the real.

Throughout the 1990s when there were artists’ talks in New York, none of the institutions – not even Bard College – would supply an interpreter for events when asked. Or at least when I asked. Usually, friends of mine like Paula Hayes and Ellen Cantor would come with me and write down salient bits and pieces about what was being said; or Amy Vogel would sit in the back with me and interpret as well as she could. It was a DIY process, and doing things yourself in your own way is one of those things you just have to do when you are disabled. But sometimes there are things you just can’t do – like make a wheelchair go up the stairs.

In the mid 1990s, the Guerilla Girls ran a poster campaign that pointed out statistical inequities by galleries in their representation of women. It was a plausible argument, and it was surprising just how many major galleries represented so few women artists. But what was even more surprising to me – and this is something the Guerilla Girls did not address – is the fact that so many of the galleries they focused on were entirely inaccessible to people in wheelchairs. If you used a chair you couldn’t even get inside to see the art, let alone be represented by the gallery.

Getting inside the physical space of the gallery has always been a painful challenge to observe: one day, I was checking out shows in SoHo and, as I passed by Metro Pictures – back when they were on Greene Street – I saw someone in a wheelchair look through the glass door of the gallery. I asked him if he wanted to go in, and he said yes. So another passerby and I helped get his wheelchair up a step into the gallery. A moment later, as we were walking and rolling across the front room, someone from the office came out to confront us, and was visibly upset: I’m not sure what his exact words were, but I think it must have been something about the wheelchair tyres marking the floor, because he was gesturing in that direction. New Yorkers seem more used to having dogs inside galleries than wheelchairs. The guy in the wheelchair was flustered, and asked to go back out to the street – so we helped him out. Every time I visit Metro Pictures, I get a bad feeling remembering this occasion. Incredibly, a lot of galleries in New York, even those newly renovated in Chelsea, remain inaccessible – and it’s been more than 20 years since disability rights legislation was passed in America.

This is one reason why it’s difficult to write about disability and art: inevitably, issues about access come up, and these issues are almost always awkward. For some disabled artists, having an audience of one’s peers means not having to deal with access issues on a constant basis – it’s simply less frustrating, and above all less humiliating, working with people who share and understand your experience of being different. But is it satisfying also? I really can’t say.

My first effort to address art in relation to disability was an essay that I wrote in 1991, ‘Postcards to Sophie Calle’. It was a nascent effort to describe a situation in which the place of disability in relation to the history of civil rights was only just emerging. I was then living in Washington D.C. and teaching English literature at Gallaudet University. Calle’s exhibition, ‘The Blind’, was a four-hour drive up the Interstate in New York. For six weeks, I drove back and forth to New York – in part because it had become a habit of mine to spend time in New York to see shows, and in part because Calle’s exhibition kept pulling me in. I started writing the ‘Postcards’ while going to the galleries and while driving along the New Jersey Turnpike: I wrote while I walked and I wrote while I drove – a paragraph here, a paragraph there. It was a very satisfying way of writing, partly because it was the first thing I had written as an academic that I was not obligated to write as an academic. On the last weekend of the exhibition, I made a series of photocopies of the ‘Postcards’ as well as one Braille copy – you never know who you will meet – and handed out copies in the gallery. The gallery staff was quite nice about it all and they didn’t throw me out. They also forwarded a copy of the ‘Postcards’ to Calle, who later faxed me back, actually thanking me.

The problem with Calle's show is that it expropriated blind people for the sake of her own art, and while she was generous in her presentation of those who were blind, and their understanding of beauty, there was something about the exhibition that was one-sided. I later had the same problem with Artur Zmijewski’s Singing Lesson films (2001/2003), in which he brings together a group of deaf teenagers to sing works by Bach. The critical reviews of Calle’s show made me cringe; one even cited her altruistic spirit. It reminded me of projects by hearing artists that use sign language as a rhetorical device, as Jasper Johns, Christian Marclay, Sam Messer, Orlan and Martin Wong have done. Wong’s work was especially patronising: along the streets outside New York's fabled Lexington School for the Deaf, he made traffic signs that were intended to say, in fingerspelling: ‘School for deaf’. Except that the fingerspelling was miss-fingerspelled, and the signs actually said: ‘School 6or Dea6’. The letter 'f' was printed as the number '6'. The issue for me isn't authenticity; the issue is one where there is a clear sense of purpose for expropriating a language which one does not know or use. If it is troubling, it is also revealing about how culture evolves, and how art, as a fiction, both transcends and transgresses the expectations that we might have for the identities of a collective social body.

The reception of the ‘Postcards’ in academia was less than satisfying. Several journals declined to publish them. One journal in particular was peeved that I had attacked a number of well-known and supposedly liberal critics for their use of blindness and deafness as pejorative metaphors. Elaine Showalter, for example, wrote in a scholarly essay: ‘We can hardly fail to welcome male feminist criticism when we have so long lamented the blindness, the deafness and the indifference of the male critical establishment towards our work.’(4) Ironically – or perhaps not – only Calle herself was supportive, and it was at her insistence that the Swiss art quarterly Parkett first published excerpts of the ‘Postcards’ in 1993.(5) Until recently, the ‘Postcards’ were my only attempt to write about disability. Even now, the process of writing about art and disability is a difficult one, in part because it brings into conflict memory and oblivion, while for every disabled person, forgetting is a process by which we survive, grow and, if we are fortunate, even flourish.

There are uncommon occasions when art that is about disability and is made by a disabled artist gets shown in mainstream art venues: Bob Flanagan’s show Visiting Hours at the New Museum, New York, in 1994, and Barbara Bloom’s subtle and evocative exhibition Broken at Gorney, Bravin & Lee Gallery, New York, in 2000. Both shows were very different: Flanagan’s brilliantly took a certain rawness about his own life and made it approachable, even gentle; and Bloom, with unstinting formalism, showed the beauty of that which is broken – vases and bodies alike. There haven’t been many shows like these over the past 15 years that I can recall seeing. But an unforgettable one was Stephen Lapthisophon’s show With Reasonable Accommodation at Gallery 400 of the University of Illinois, Chicago, in 2002. Lapthisophon isn’t as well known as he should be. His show took as its premise the Americans With Disabilities Act of 1990, and toyed with the question of what constitutes ‘reasonable’ accommodation under the act. It’s an absurd legal concept that can be unremade at will – where the reasonable, the practical and the meaningful are always at odds with each other. In Lapthisophon’s show, paintings were turned against a wall; an audio piece spit out fragments of a track about broken bones and prostheses, but the track was so fragmented it simply fell apart as static; there was a wheelchair ramp – so beautifully symmetrical, solid and minimal that it could have been made by Ellsworth Kelly – deliberately and inconveniently positioned to lead into a wall. It was a ramp to nowhere, pointedly reflecting how the ADA is legislation to nowhere: the red tape, the stigmatising burden of making requests for accommodation, and the sometimes absurd judicial decisions rendered by the Supreme Court have made the ADA much less provident than it was intended to be.(6) Yet Lapthisophon’s show is so subtle and understated there’s little didactic undertow. In a review published in frieze in 2003, the late Kathryn Hixon described Lapthisophon’s work as ‘post-politically correct’, and it’s an accurate assessment. What Lapthisophon shows us is that there are no easy answers about disability, and no easy answers for disabled artists. We make progress where we can, even beautiful progress to nowhere, straight into a wall.

Art installation of a green wheelchair ramp leading up to a solid wall, illustrating the idea of progress to nowhere

Stephen Lapthisophon
Ramp, 2002
Painted wood
60.9 x 10.2 x 91.4 cm
© Stephen Lapthisophon


  1. Much ADA-related litigation in the USA has involved defining who is disabled, and under what the conditions of disablement are. For example, in 2002, the Supreme Court ruled in Toyota v. Williams that a woman with severe carpal tunnel syndrome who could no longer work on a car assembly line was not disabled by law because, among other things, she could brush her own teeth; the ‘mere’ presence of a physical impairment does not legally constitute a disability under ADA. While this has been a painful learning experience, it has helped us better understand the unpredictable and uncontainable definitions of disability, and the difference between a disabled person and a disabling situation.
  2. Georges Canguilhem, The Normal and the Pathological, 1943, translated by Carolyn R. Fawcett and Robert S. Cohen, 1991, Zone Books, New York
  3. Julia Kristeva, ‘Avec le handicap: aux frontières du vivant’, Magazine Littéraire, February 2004; published in English as ‘At the Limits of Living: To Joseph Grigely’ in Journal of Visual Culture, vol. 5 no. 2, Summer 2006, pp. 219–225
  4. Elaine Showalter, ‘Critical Cross-Dressing: Male Feminists and the Woman of the Year’, Raritan 3.2, Autumn 1983, pp. 130–149. I later collected together similar quotations by different writers, which were published as ‘Blindness and Deafness as Metaphors: An Anthological Essay’, Journal of Visual Culture, vol. 5 no. 2, Summer 2006, pp. 227–241
  5. ‘Postcards to Sophie Calle’, Parkett, no. 36, 1993, pp. 88–101. The entire run of the postcards was later printed in Michigan Quarterly Review, vol. 37 no. 2, 1998, pp. 206–233, and reprinted in The Body Aesthetic: From Fine Art to Body Modification, Tobin Siebers (ed.), 2000, University of Michigan Press, Ann Arbour, pp. 17–40.
  6. Part of the problem – and this is often forgotten by legislators, lawyers and disabled people themselves – is that ADA is not a civil rights statute, but an ‘accommodations’ statute. Unlike the Civil Rights Act of 1964, ADA requires that disabled people need to be accommodated only when the accommodation is deemed ‘reasonable’. Justice Rehnquist stated in the case of Alabama v. Garrett in 2001 that, in passing ADA, Congress had not proven that states regularly and repeatedly engaged in ‘irrational’ employment discrimination against the disabled. Justice Rehnquist explained that: ‘It would be entirely rational (and therefore constitutional) for a state employer to conserve scarce financial resources by hiring employees who are able to use existing facilities.’ The problem here is that the term ‘rational discrimination’ euphemizes discrimination by implying that, although discrimination may be bad, it is not so bad as to be unjustifiable. No other American group is subject to such a contingency clause, where one’s equality is based on arbitrary fiscal factors, as Rehnquist further stated in his dissenting opinion in Tennessee v. Lane in 2004.