The Disability Project: Toward an Aesthetic of Access
(Shortened Running Title:  The Disability Project)

Joan Lipkin, That Uppity Theatre Company
Ann Fox, Davidson College
 
"The different people are not like other people, but being different is nothing to be ashamed of.  Because people are not such wonderful people. They're one hundred times one thousand.  You're one times one!  They walk all over the earth. You just stay here.  They're common as weeds, but--you--well, you're Blue Roses!"--Tennessee Williams, The Glass Menagerie

"One of the things I love about the group is that I get to reimagine the world the way I want it to be."--Joan Lipkin

            Until The Disability Project commenced in the fall of 1997, the most well-known intersection of St. Louis, disability, and theatre was the wan face of Tennessee Williams' heroine Laura Wingfield of The Glass Menagerie (1945).  Although her difference was prized by Williams as something precious and magical, the play finally suggests that the polio-stricken Laura remains behind the closed doors of her family's cage-like tenement for the rest of her life.  Disability was made into a physical and literal quality of difference that could not transition into the modern world, and thus,   
...Laura Wingfield conforms precisely to the stereotype of the disabled woman as helpless, pathetic, and unqualified as a prize for males to pursue.  She is a constant worry to her family; her life is a morass of loneliness and monotony. (Kent 1988)

Laura becomes a figure whose tragedy we as audience can sentimentalize, and yet equally one whom we can distance from ourselves and our so-called normal bodies, since "people with disabilities...are or have been considered creatures of disorder--monsters, monstrous" (Davis 1995).  Fearful that the fate that has befallen Williams' heroine could happen to us or our loved ones, relieved that it has not, we willingly leave Laura behind us, as she blows out her candles and retreats into the margins of memory.
            Disabled bodies have traditionally been depicted in similarly negative, highly specific ways in theatre.  As disability theatre scholar Victoria Ann Lewis confirms (1998), contrary to what we might expect, "it is not that the nondisabled theatre knows nothing about disability and is waiting to be enlightened.  To the contrary, the depiction of disability is over-represented in dramatic literature.”   Disability, as it has appeared onstage, has amounted to a sort of gentrified freak show, allowing audiences the opportunity to gaze at disabled bodies, rather than full-fledged characters, voyeuristically and metaphorically.  Lewis (1998) further defines the highly predictable nature of those visual metaphors:
The old moral and medical models of disability continue to dominate theatrical depiction, not only because they fill a deep human need to define ourselves as "normal" against some standard of abnormality, but also, in terms of theatrical practice, they are dramaturgically useful.  For example, under the moral or religious construction of disability, physical difference usually connotes evil, a punishment for sin, or, to the contrary, designates beatitude, a blessing from the gods....The medical model, the historical successor to the moral model, views disability as an illness.  The disabled person is either charitably removed from society, i.e., institutionalized, or cures himself, or at least "passes" as cured.  The possibility of societal prejudice is never considered...    

When such social constructions of disability are defined as normal by audience members, their collective gaze re-stages what happens outside the theatre walls, where the bodies of disabled community members are appropriated by the stares of strangers.
            As the title of Kenny Fries' recent anthology of writing by authors with disabilities suggests, however, this community is "staring back":   "No longer compliant objects of the stare, people with disabilities are...claiming the body as a legitimate part of identity, a body whose metaphors and physicality belong to us"  (Sandahl 1999).  The gaze of that community meeting the eyes of theatrical spectators head on results at once in both a connection and a challenge.  It is highly appropriate that performance is proving to yield rich potential for rewriting this relationship, as the disability rights movement meets a performance culture that has struggled with its own depiction and constructions of the body relative to race, gender, class, and sexuality in contemporary times.   The performance piece that is the subject of this essay endeavors not to integrate the disabled into classical ideals of theatre, but to reconstruct our notion of theatre and culturally communicated definitions of ability.  This attempt to re-envision lies at the heart of projects by artists with disabilities and others who share their concerns.  Dance scholar Ann Cooper Albright (1997), for example, praises the integration of dance and disability that has "fully deconstructed the privileging of ability within dance.”   Feminist director Carrie Sandahl (1999), whose own directing has aimed to deconstruct the metaphors surrounding disability, strives for a kind of innovation in theatre and drama similar to Albright's:
I long to see, and help create...performances by people with disabilities--performances in which the body and self are not separated, performances that resist the simple deconstruction of tired metaphors, performances that offer audiences a unique disability perspective. 

            This essay tells the story of an effort to move beyond the extremes of perversion and pity in the traditional depiction of disabled bodies.  It is a chronicle, although far from an exhaustive one, of a work still in progress, exploring questions about what it means to construct a theatre piece that aims to extend how theatre, ability and community have been defined.  It is offered as one way in which the worlds of art and activism can intersect, and as an invitation for members of other theatre communities to integrate these strategies into their own, if they would be useful.  In expressing their own experiences, participants in The Disability Project have made the stage an avenue of empowerment for the disabled community, rather than one more sideshow.
What is The Disability Project?
"Sometimes, it's the ones who don't talk whose story is the loudest.  Sometimes, you start to tune out the ones who usually talk because you're so used to them talking, what you really hear is the ones that don't say anything."--Joan Lipkin, Small Domestic Acts

            The history of That Uppity Theatre Company, founded by Joan Lipkin in 1989, is one of introducing work to the St. Louis community by populations traditionally marginalized in the theatre and in society at large.   It presents work that legitimizes those experiences of audience members and artists not usually acknowledged, either within the scope of local theatre or on a national level.  The emphasis it places on diversity has opened up space for presenting the work of women, people of color, lesbians and gays, people with disabilities, the working class, and ethnic minorities.  For example, its Alternate Currents/Direct Currents Series has specialized in bringing to St. Louis prominent lesbian and gay solo and ensemble performers, such as Holly Hughes and Quentin Crisp.  Its Women CenterStage! Series has presented works that depict the experiences and artistry of women, including feminist performance artist Karen Finley and African-American poet and playwright Ntozake Shange. 
            That Uppity Theatre Company has also developed individual productions of an activist nature.  “After Rodney,” a multicultural traveling poetry performance group, created after the Los Angeles uprisings over the Rodney King beating, addressed the impact of racism, whether overt or subtle.  Will The Real Foster Parent Please Stand Up? and The Disability Project focus on foster parenting and disability culture, respectively.  The philosophy of Lipkin's company has mirrored that of her playwriting.  With collaborator Tom Clear, she has worked in the genre of musical theatre to advocate for gay and lesbian rights with Some of My Best Friends Are... (1989), and reproductive rights with He's Having Her Baby (1990).  Her play Small Domestic Acts (1995) investigated the construction and limitation of gender roles, and One Sunday Morning (1996) explored communication and responsibility in race relations.  At the core of each work is an investigation into the multifaceted nature of identity, its frequent mutability, and how it is negotiated and shaped by the self and society.
            The specific genesis of The Disability Project arose from a dramatic intersection of Lipkin's professional and personal lives.  In January 1996, she was invited to join Joseph Chaikin, founder of the historic Open Theatre, to work for three weeks with him and other theatre professionals as an artistic associate.  Having suffered a stroke that left him highly functional but impeded the syntax of his speech, Chaikin determined to explore disability, a theme that had long interested Lipkin as well.  Through her work as both a presenter and a theatre artist, Lipkin has frequently focused on questions of identity and change.   She believes that we exist as multiple selves across time, in an ever-shifting series of relationships to other people, our bodies, and whatever circumstances in which we might find ourselves.  How, she wondered, do we respond and experience ourselves when change, particularly of a radical kind, occurs?  The connections to disability are immediately recognizable, and its relevance cuts across the usual boundaries raised by identity politics.  We all, for example, experience variations in ability throughout the course of our lives.  In our culture, with its emphasis on the idealized whole and beautiful body, "the element of repulsion and fear associated with fragmentation and disability may in fact come from the very act of repressing the primal fragmentariness of the body"  (Davis 1995).  Lipkin joined other theatre professionals including former Public Theatre literary manager Bill Hart, screenwriter Gilbert Girion, and other participants, disabled and able-bodied, at the Atlantic Center for the Arts in New Smyrna Beach, Florida.  There, they collaborated on and produced an informal performance piece that was favorably received by the arts patrons and general community of New Smyrna Beach and the Orlando area. 
            Lipkin returned to St. Louis even more invigorated, fully engaged by the question of how we reshape our lives and identities in response to change.  However, rather than strictly seeking out theatre professionals, her interest in activism and the political significance of community-based theatre led her to focus on how theatre non-professionals might contribute to a project of this kind.  She designed The Disability Project to unfold in three distinct phases; the first would consist of laying the groundwork and garnering community suggestions and responses.  The second phase would be the actual workshops in which the performance piece would be developed, and include filmed and photographic documentation of the process.  The third and final phase would be the mounting of a full-scale public performance in the fall of 2000. 
            By the fall of 1996, the first phase of The Disability Project in St. Louis was well underway, as Lipkin met with disabled and able-bodied community leaders, activists, artists, and laypeople who had expressed an interest in the enterprise.  With them, she was able to address concerns she had, including how they felt about an apparently able-bodied person leading the Project.  Lipkin’s reputation as a theatre artist helped lay the groundwork.  As a longtime theatre professional, she knew how to develop and stage works successfully, and how to find a language to translate ideas into a meaningful theatrical experience.  As someone well-established in community-based work, Lipkin had a strong commitment to maintaining continuity with members of the disabled community to get feedback; this would not be an autocratic process.   In addition, this would not be a performance concerned with “mainstreaming” performers with disabilities, as it would look to question the very nature of “normal” theatrical representation.  It was reassuring to the members of the disability community that this Project would be activist in nature as it presented a range of disability experiences, reflecting needs that differed widely.  
            After considerable feedback, Lipkin was ready to initiate the second phase, beginning the weekly workshops that would facilitate the generation of the work itself.  The Disability Project would consist of a triannual series of 12 to 16 weekly Saturday workshops that would be held in the fall, winter, and spring.  Individual meetings would stress conversation, writing, improvisation, and sound and movement work, in order to facilitate the development of material around the culture of disability.  As she conceived it, the Project would be designed to empower individuals, honor their stories, imaginations, and talents; foster community; and enhance public awareness about disability.  At the same time, its larger goal would be the creation of a large-scale, multidisciplinary piece for production throughout the St. Louis area.
            Lipkin was diagnosed with breast cancer in late December of 1996, however, and the Project was put on hold for a time.  Having to struggle with her own limitations as a result of her illness, Lipkin found the Project now taking on a new immediacy, and in the fall of 1997, the first workshops were initiated.  The workshops were suspended again for six months in the spring of 1998 as Lipkin underwent treatment for illness.  Despite these pauses, the Project has continued to grow steadily and strongly under her leadership.
The Company

"Whether we are role-playing, improvising, writing poetry or looking deep into our lives as people with disabilities, we have unity.  There is a central nerve bringing us all together.  There are no stars.  But rather people sharing and supporting one another.  We are individuals wanting to bring out the best in each other, educate society and have a hell of a good time doing it!"--Katie Rodriguez

            By its very presence, the company that forms the core of the Project refutes ableist assumptions about disability ranging from passivity to disinterest in activity and creation.  The relationship of group members to each other is one that is neither completely democratic nor based in traditional hierarchies.  As the director of the Project, Lipkin is something more than a facilitator.  She brings questions and activities to the group around which they can generate material; likewise, she has to make decisions about the shape of the piece.  Nevertheless, while this is a company with a leader, it is one without a star; participants in the workshop are all asked to contribute to both the development and performance of the material.  Indeed, on a fairly regular basis, Lipkin sends out requests for writing on topics such as work, pain, or access, for example, with an eye toward assembling texts reflecting the performers’ individual voices.  There is no pecking order of vision; while Lipkin may have subjects she is eager to explore or questions she wishes to pose, group members are also encouraged to offer ideas and determine the extent to which these are investigated.  Although Lipkin is responsible for shaping the final product, the prevailing myth of playwriting as a solitary enterprise is rewritten, enhanced as it is by the many insights into the disability experience.  This is further emphasized in Lipkin's use of guest artists to lead the group.  Visiting theatre professionals such as performance artists Tim Miller and Michael Goldfried, actors Kate Nugent and Joe Salvatore, and director Andrea Urice have taken turns generating material with members.  This has further troubled the stable notion of a single playwright's perspective as the ultimate authority and acknowledged the multiple perspectives within the piece. 
            On any given Saturday morning, 12-15 members of the assembled group speak to a wide range of human experience in St. Louis.  Traditional hierarchies of virtuosity are thrown out, as the company is a mix of persons with varying degrees of disability, ability, and performing/playwriting experience.  The range of their backgrounds and abilities adds richness to the piece; it includes students, nurses, public speakers, activists, homemakers, actors, professors, wheelchair athletes, dentists, occupational therapists, lawyers...the list is long and diverse.  Similarly, the group contains differences of race, ethnicity, class, age, occupation, education, sexual orientation, physical ability, and performing experience.  The specific disabilities cover a wide spectrum as well, including spinal cord injury, multiple sclerosis, cerebral palsy, AIDS, alcoholism, asthma, cancer, polio, stroke, amputation, and depression.  Whether Andrew Lackey, a high school student/actor who has cerebral palsy; Katie Rodriguez, a motivational speaker and poet with quadriplegia; or Patty Clay, a lab technician and St. Louis Cardinals fan who has a double amputation, each participant brings an individual and significant perspective to the Project.  They also come for different reasons; for example, Ann Fox, who is a college professor, finds it a means to expand her creativity beyond research and the classroom.  For Marcia La Cour-Little, a professional actor, it is a means to introduce herself to more innovative theatrical practices; while for Katie Rodriguez, it is a way to return to the theatre performance she thought she had to give up when she became disabled.  For Jim Tuscher, a lobbyist active in setting local and state public policy, the Project is an additional venue in which to practice his activism.
            Particularly significant is the mix of persons with and without disabilities.  This not only keeps things interesting for the performers; it also challenges each set of participants in a way that places them outside traditional conceptions of what movement is possible, or even allowed them.   For those performers with disabilities, the challenge lies in claiming the stage with the range of movements that they have rather than in a manner that emulates actors without disabilities.   For the latter group, new possibilities open not only for their understanding of the disabled, but also for the exploration of how they can be more creative with their own bodies.  And if one can imagine movement beyond its traditional configurations, one can, by extension, quite literally express previously unheralded concerns and experiences.
            Although the group members represent a range of identities within the community, there is no attempt at tokenism, no claim to exhaustive representation of all possible subject positions.  The group has been somewhat fluid in its construction; some participants have come and gone, both due to the demands of real life as well as a desire to allow others in the community to share the experience.  Nevertheless, because no one is called upon to be the virtuoso or the star, there is an emphasis on ensemble work and experience.  And because the performers are the creators as well as members of the community for which they perform, the line between some actors and audience members is blurred, suggesting that this art is not simply for entertainment.  Audience members cannot leave without seeing their concerns as inextricably linked with those of the performers, able-bodied or not.  Indeed, the Project seeks to complicate the notion of who the audience is as thoroughly as possible, bringing the concerns and experiences of persons with disabilities to spectators ranging from the disabled to corporate audiences of those who, by virtue of their status and resources, are particularly positioned to effect some kind of advocacy for disability rights. 
            Throughout, however, there has remained a consistent emphasis on the importance of individual members and their commitment to the Project and each other.  One moment when this became most apparent was last fall, when members of the group began to take responsibility for each other independent of directives from Lipkin.  For example, Katie Rodriguez can only come when someone is available to catheterize her midway through the session.  Usually, her husband assists her, but on days when conflicts make him unable to do so, Rodriguez cannot attend the workshop.  When this became apparent to the other participants, two members of the group trained as health professionals readily offered to help, thus making it possible for Rodriguez to participate on a regular basis.  Group members offer support, give rides, work together on pieces outside of session, share meals, and socialize--in short, a community has been established that is a microcosm for the kind the ensemble hopes to create in the greater St. Louis area and beyond. 
The Process and the Product:  Shaping the Aesthetic of the Disability Project
"It has meant so much to listen to others' stories, and feel free to tell my own.  I have been able to uncover feelings and express them when I probably would have left them buried forever.  Sometimes it means tears, when things are tough.  Then comes an inspiration for a haiku, or someone else's story, or a fun theatre exercise.  As serious as the situations and histories are with our disabilities, we are able to find humor, and to 'humanize' disability to the point that others without disabilities can relate their own experiences and their parallels."--Patty Clay

            If The Disability Project is about legitimizing for the entire St. Louis community the voices of those who haven’t been heard, then it should come as no surprise that listening itself is at the heart of the process of creation as it happens within the individual weekly sessions.  The starting point for each meeting is establishing a community among participants, as well as creating an atmosphere of trust. Group rituals have helped lay this groundwork.  Every session begins with a check in; members sit in a circle, and each is encouraged to briefly share whatever she or he wants about important events and moments of the week, or simply how they are each feeling that day.   
            There is a therapeutic value to this exercise, which solidifies the community and allows participants to be present with their feelings; however, the warm-up also provides material for the Project.  For example, two pieces in development came out of group members sharing recent frustrations with medical experiences.  At Lipkin's suggestion, Stuart Falk, who had ironically described his recent hospitalization for a recurrent urinary tract infection as a trip to Club Med, turned the recounting of his experience for group members into "Club Med(icine)," a monologue about his recent vacation in St. John's: not the island, but St. John's, the medical center.  By playing with his audience's expectations, Falk delivered a comic sendup of the very real, very often unpleasant experience of hospitalization:
            Well, I just got back from Club Med.  Ocean breezes, beautiful women, the lovely isle of St. John's...okay, okay, so it was really Club Med-icine at St. John's Medical Center.  But you can't exactly go to the Caribbean with a urinary tract infection....When the urge arises, all I gotta do is make a quick call to my favorite travel agent.  You know, 911? And quick as a flash, they're there.  I don't even have to get out of bed, because at Club Med, they provide private transport.  The fun begins the minute you make the call:  I lay there in the dark with a mysterious woman who whispers intimate questions to me.  "What's your name? How does this feel?…Do you have insurance?"

Similarly, Colleen Gilmore's exasperation with the doctors treating her multiple sclerosis led members to develop a variety of scenes that explored doctor/patient relationships, and the stresses, disappointments and challenges present for both populations.  Immediately following check-in, the group does warm-up exercises to center them in their bodies in preparation for the task of theatre-making.  This reminder that we are our bodies, and that we can re-imagine their representation is an important echo of the philosophy of the piece. 
            The exercises of the workshop that generate and explore material encourage people to participate from their levels of readiness and comfort, as well as to use their own experience and imaginations; this becomes particularly important for those group members with little theatrical training.  The Project emphasizes the need for a range of motions, sizes, shapes, and stage dynamics to make an interesting stage picture.  Likewise, from week to week, the exercises and activities in which the members engage vary, based on what is being developed.  Some of the exercises are ensemble, some solo, underscoring the belief that there is not one best model of how to do theatre or represent experience.  Furthermore, this range of activities embodies a multitude of responses to and representations of disability, not only to suggest the complexity of the disability experience, but to also represent it in innovative, unfamiliar ways that stimulate the viewer. 
            Some activities have included writing and reciting haikus about the workshop; interviewing a partner in the group about real life issues arising from disability, then writing and performing a piece based on that conversation; developing scenes around the idea of access by using rope as an image, or around the idea of fortune, using a deck of cards; writing manifestoes of disability and theatre; and writing the story of how one's own disability happened.  Like most deeply creative work, the direction is not always certain.   However, pieces have emerged from ensemble members’ openness to work, and to let scenes or moments that strike them as interesting or significant evolve without a predetermined agenda.  Since the objective is to create a new vision of community and disability, one that is highly imaginative and theatrical in its conception rather than didactic, the process is perhaps more multilayered than many theatrical endeavors. 
            One of the exercises that has been particularly important for the group, for example, is a traditional theatre exercise that involves mirroring, in which two participants sitting and/or standing across from each other take turns initiating actions, which they try to enact synchronistically.  There is a particular power in this exercise on several levels: it is an incredibly intimate interaction that requires one to focus completely on the other, to be fully aware of a partner's presence.  However, it also allows partners to explore the range of motion available to them.  An obvious example is when an able-bodied person is paired with a disabled group member; the former becomes acutely aware of the ways in which the other can move.  (And the emphasis here is on what is possible, rather than limitations.)  But group members with different kinds of disability that are paired are equally challenged to explore the position of the other and consider the potential range of movements that they can share.  The most striking thing about this exercise, however, are the moments in which it completely deconstructs a leader-follower hierarchy, when the mirroring is traded back and forth between partners wordlessly and seamlessly, as they become highly attuned to the energies, movements, and cues of the other.  The importance of connection, mutuality, and imagination are primary, and become powerful tools to be enlisted against the fear and prejudice of our culture against its own frailties.
These trust exercises help to more carefully define the nature of the Project’s focus.  Because they serve as a connection between performers with and without disabilities, they suggest that, by extension, the Project will not only speak to one group while excluding the other.  The Project is meaningful for the members of the disability community, and importantly and rightly so; but it is also intended to suggest the relevance of disability issues across communities. 
            The non-representational nature of many exercises served as an early experimentation with non-naturalistic methods that have since been integrated into the performance.  For example, recently, actors in the Project have been experimenting with portraying what it is like to suffer an asthma attack.  However, rather than strictly staging someone having an attack, Lipkin asked ensemble members to also personify the lungs and heart.  The asthmatic individual also engaged in a dialogue with the body parts, who had their own personalities, and even senses of humor.  Such dramaturgical choices become effective ways to suggest life with a disability in ways outside the familiar stereotypes or metaphors.     
            As ideal as this theatre-making process sounds, it is not always neat; there have been difficulties from the mundane (such as encouraging group members to be on time on a Saturday morning when they might prefer to sleep in) to the more serious, as when the process is particularly painful for group participants.  For example, in the middle of last spring, the group was working on a piece called "Waking Up in the Forest."  In this scenario, participants imagine that they are creatures (not specific animals) awakening in a forest, exploring their own bodies and potential for movement, and becoming slowly aware of others around them.  They then explore the nature of these others, and connect to them nonverbally.  Some touch hands, others playfully mirror each other, while still others rub shoulders, elbows, wheels, canes, heads, and so on, by way of mutual discovery.  Because this was an exploration in movement, as Lipkin workshopped it, the more ambulatory members of the group were asked to stay on the ground, while those with disabilities who were in wheelchairs or had some ambulation were highlighted.  In this way, they were able to experiment with interesting shapes and levels, and think about movement in an untypical manner.  Nevertheless, this raised painful feelings for Patty Clay, whose artificial limbs allow her limited movement and are a source of distress for her.  Although the exercise was about exploring the different ways we can move our bodies, she was not ready for such a dramatic shift from how she saw herself; she began to cry, and was ready to quit the group (although she ultimately did not).  As the Project has developed, the performers have confronted other kinds of difficulties that have emerged from the process.  Significant differences in how participants respond to and engage in exercises relative to their gender, or how long they have lived with their disability, have emerged.  Likewise, one participant in the Project voiced a concern that the overt inclusion of homosexuality in the work by another ensemble member might somehow take away from the priority of disability concerns.   
            In most of these examples, the issue raised for Lipkin and the others became: how do you move the art making process forward, while still honoring the feelings of participants?  The answer was to offer group members a time out from activities they felt were too invasive or to openly discuss the nature oppression.  It should be noted that not only has this enhanced group members' feelings of empowerment, but very few of them have taken self-appointed breaks.  This example suggests that not every issue has a clear-cut solution, but that much of the process has been about confronting difficulties as they arise, grappling with them as much as possible, and making a safe place to share this journey.  In the ritual that closes every session, ensemble members remind each other of this, as they join hands and thank each other for their presence and work that day.            
            In the end, this Project contains no shortcut to the relative safety of the well-made play, no refuge in a virtuosity that seems to politely ignore audience members.  The episodic nature of the piece, and its reliance on movement, music, and constant shifts between the types of dialogue and scene work occurring has Brechtian underpinnings, with a similar bow toward audience engagement.  The audience is not asked to see this picture of disability as completely representative.  Rather, they are asked to see it as the beginnings of how the stage might suggest the complex matrix of personal isssues and political dilemmas engaged by persons with disabilities on a daily basis.  Indeed, the Project has been emerging as a part of the ongoing dialogue among group participants, one that stresses the value of people's own stories, taking into account the audiences for whom, by whom and about whom the piece is made.  This attention to the audience not only demands that they listen to these stories and take responsibility for their own response to disability; it also acknowledges that there is an anxiety about confronting these issues for audience members and performers alike.  Confronting the very real fears about disability (What will happen if I become profoundly disabled? How will I be able to remain a part of the community?  What if someone close to me, a member of my family, becomes disabled?  How do I confront the inevitable disabilities that come for all of us with the aging process?  If I am a person with a disability, how do I feel about being reminded about my disability?) acknowledges audience members but simultaneously deconstructs the social taboos that surround what some of them might read as possible and permissible for members of a community.
Putting it All Together
            As we go to press, the most representative moments in time when these facets of participant, process, and product came together to date were the final workshops that occurred in December 1998 and May 1999 to conclude the fall and spring sessions, respectively.  Both times, the members of the group who had participated in the fall and spring workshops staged an informal presentation for a diverse audience: community members, family and friends, potential funders, and a documentary film crew, among others.  Deliberately, neither presentation was polished, nor presented as a final performance.  In fact, part of the point was to expose the seams of the Project, to remind all concerned that this was a piece in process.  In the fall as in the spring, Lipkin introduced the workshop session as one that incorporated the diverse aims of the Project.  No one performer took the lead; the presentation was broken into a series of moments that incorporated various group members.  Some of the activities staged in the fall suggested the means by which material was generated, such as the Anxiety Orchestra.  Group members, one by one, added their sounds to a slow building of an improvisational melody expressing different anxieties.  It underscored not only that the material for the Project comes from group members, but that that material is complementary.  Just as the orchestra contained high and low tones and rhythms, so was the Project’s range and juxtaposition of stories multifaceted.  More established pieces were also presented, that drew on the ensemble as well as highlighted individual stories.  For example, the entire group participated in a scene in which a series of ludicrous explanations were offered to a highly qualified person with a disability applying for a job ("I can't hire you because it's Tuesday") as a means of lampooning a narrow concept of ability.           
            While comedy is central to the Project, it is complemented by more serious moments, as two of the individual stories performed in the fall suggest.  In one, "The Uninvited Guest," Colleen Gilmore likened her multiple sclerosis to an unwanted visitor that had taken up residence in her body, using the metaphor to suggest the uneasy, but necessary coexistence that she had forged with her guest.  In another, Katie Rodriguez and Rich Scharf shared the story of her first sexual experience following paralysis.  Unexpectedly, Scharf, a gay man, opened the piece by telling it from Rodriguez’s point of view, until they began to pass the narrative back and forth, enact sections, or speak simultaneously.  Performed in this way, their piece underscored the power stories have to speak across experiences, even when the lives of the group members do not all represent disability experience.  The conclusion of the fall presentation aimed to break down the boundary between audience and performers.  The group members lined up, then named themselves and by way of introduction read a self-written haiku that suggested what the Project had meant to them.  Then Lipkin facilitated an informal discussion with audience members to solicit further feedback on the work to date; the workshop was not only favorably received, it sparked a long and thoughtful exchange.
            In the final presentation for last spring, the use of comedy and the lack of closure in the piece to date were further highlighted.  Comedy is central to the piece, and other disability theatre, as both a coping mechanism and a satiric tool:  "Since the beginning of a conscious disability drama, the most common strategy used to attack perceived notions of the physically different body has been that of humor" (Lewis 1998).  For example, one of the most satirical scenes in the piece to date, developed last spring, is “The Healing Ministry," a send-up of the hypocrisy of faith healers and the outdated moral model of disability.  Building on the experiences of those members of the group who have been told by strangers that their disability is a physical manifestation of some sin, several participants wrote a piece that skewers those who use spirituality for social and economic exploitation, and equate disability with immorality.  In it, a married pair of evangelists gradually lose control over their carefully-crafted scheme to coerce money out of the faithful.  Their efforts to prove their own power become more and more ludicrous as they are confronted by supplicants with disabilities who they accuse of consorting with evil:
SALLY. [as faith healer] I think you're in that chair because you never believed!
JIM. [in wheelchair] I thought it was the drunk driver that hit me-!
SALLY. You obviously don't believe, and if you don't, then I can't help you.  I can feel the power of evil from here.  (To the audience)  Folks, even I can't heal someone who doesn't want to be healed, who still harbors the power of evil. (Back to Jim) There is only one way to show me that you truly believe, that you truly want to be healed.  Show us with your donation!

The healers' paltry excuses that at once compensate for their own inadequacies and demonize persons with disabilities become immediately transparent.   
            Again, the presentation closed with a non-ending of sorts.  The lack of traditional closure planned for the anticipated production makes its ending a place from which audiences can be empowered to initiate a different kind of movement.  What was enacted was a point of departure, where the participants followed a performance of mirroring by turning to acknowledge the audience and say, "We are of you. We are among you. We are you. Do not be afraid."  Reassuring and touching each other as well as the audience, the actors moved out among the spectators, lovingly inviting them to be part of this resolution; the actors continued to finally repeat the phrase, “Do not be afraid.”  The potential discomfort of some audience members, and the risks they have taken in being open to their fears, was fully acknowledged.   And yet, with the risk of admitting one’s fears and assumptions about disability culture, comes the reward of having that understanding deepened, those issues brought to bear on one’s own life in a meaningful and useful way.
Conclusions...For Now
            As we go to press, the Project is still in progress, but we have determined four important areas of concentration that lie at the Project's heart:
            1) Social:  The piece aims to bridge isolation: of able-bodied and disabled communities from one another, and of individuals from their own creativity.  By showing how the issues surrounding disability, while unique and different in nature, are ultimately relevant to any community, the Project breaks through the isolation of communities that have defined themselves separately from those with disabilities.  Likewise, it makes the stories of those who have been marginalized visible.
            2) Psychological:  The piece continues to help its participants heal some of their pain by providing continuity, and an opportunity to share and explore life experiences in a theatrical setting.  In this way, performers have been able to process them in a new way, in dialogue with others. Audience members will be invited to consider their own lives and pain as part of this dialogue.  Together, workshop participants are learning, as well as working through issues of disability, as persons with various kinds or stages of disability become models for one another.  Likewise, participants are challenging themselves in ways new to their expertise.
            3) Political:  The Project doesn't make any assumptions about its members or audiences, but challenges them to examine their own openness to the relevance that disability has in their own lives and the lives of others.  Indeed, not everyone in the Project comes to it as an activist for the rights of the disabled.  And disagreement about the best way to advocate for rights is welcomed, because it is a necessary part of engaging a fuller conversation on the issue.  Indeed, Patty Clay has gone so far as to make this her primary form of activism, after long involvement with other political groups in St. Louis.
            4) Aesthetic:  The Project is a heightened investigation of how one finds a theatrical language to express experiences, particularly those that have been ignored by mainstream theatre.  The Project places much emphasis on sound and movement, expressionistic techniques, shared narration, choral work, and split subjectivity.  In short, it employs many different forms to dramatically suggest the complexity of life with a disability and disability culture. 
            Of course, while much has been accomplished, there are still many difficulties to be resolved.  The piece may address the assumptions and fears of audience members where disability is concerned, but those same prejudices remain major obstacles to mounting the piece in the first place.  Issues of where the performance can take place are as paramount as the generation of material.  Even though we have commemorated the tenth anniversary of the Americans With Disabilities Act, there is still the problem of finding a theatre space that is affordable, fully accessible, centrally located, easily maneuvered, and that can accommodate a large audience comprised of both able-bodied and disabled persons.  The spaces available in the greater St. Louis area currently communicate societal priorities: theatres simply aren't designed to accommodate audiences containing more than a few wheelchair users, for example, even if they are accessible.  This politics of space is integral to the success of the Project, yet it is often the place where the fears of the community most easily and immediately manifest themselves.
            Complicating an idea of audience is also an important priority at this point.  Making a piece of art that is deliberately activist has led the ensemble to imagine the different venues in which it might have an impact outside the scope of traditional theatregoing.  To that end, the Project is presently investigating different audiences to whom the piece could be taken.  For example, ensemble members would like to develop performances designated for diverse audiences such as health care professionals, architects, legislators, and corporate employees.  By taking the Project into the community in a literal fashion, performers could address those who are particularly well-placed to effect change for the disabled.  As of this writing, Lipkin is actively engaged with local corporations to schedule such visits, perhaps by a smaller traveling subset of the larger group.     
            In one of the pieces currently being developed, a group of people with disabilities stands at the bottom of a staircase, frustrated by the lack of accessibility it represents.  But the piece doesn't end there. The outlines of the stairs are suggested by a thin rope ladder, which one of the ensemble cuts through to represent the new accessibility that the ADA enforces.  That accessibility, audiences are reminded, doesn't just mean a level playing field, but indeed, an explosion of possibility; in this scene, as the group members wait for the stairs to be deconstructed, they imagine the myriad opportunities that await them when physical boundaries are removed. This, ultimately, is the goal of The Disability Project: an aesthetics of access that at once legitimizes the experiences of persons with disabilities--while imagining beyond the boundaries to make such visions self-fulfilling prophecies.

 

 

 

 

 

 

Notes