The Most Fabulous Excitement: a conversation about disability and theater

The rush to seat the theater is exuberant. There are lovers of art, friends of performers, friends of friends, all crowded in to see a play that features the talents of developmentally disabled actors. Did you come because you are disabled? Because they are disabled? Do you know someone in the production? Curious? You are an outsider. This throng of people feels strange to you, especially in a red-velvet, rich venue like The Jewelbox. Can just anyone rent this place? The seating is tight and all around you are uncommon looking people. Faces askew, talking loudly, tics, a physical vigor that might cause a recoil, strange smells. Is that a skin disorder? Some are clearly developmentally disabled but others you aren’t so sure. Is that person abnormal? Or, a normal audience member like me? Some folks rather large actually, another so small, here frenetic, there despondent, bizarre clothing, and that one in a diaper… I hope they don’t sit by me. You observe, people at extremes. You are smiling solicitously, your face kinda hurting, uncomfortable but trying to mock the behaviors of someone who isn’t freaked out by proximity to abnormality, to strangeness, to human smells…theater

Is it OK for you to be here? Are you here for a spectacle you didn’t anticipate? Is it OK to be indulging your concern and curiosity by ogling at these audience members, these actors. Maybe it’s more polite to look away, and pretend we’re all normal here, together. Yes, that’s a good idea. The lights are dimming, the play is about to begin. It’s hard to concentrate with random people hooting, shouting, and swaying but… alright. Will it be sweet, will it be strange? The theater black, haunting music plays above foil stars, the staging of a children’s play. Shadow puppets move, as the music dances with romantic longing, human voices are laced with the melody, narration overhead. An actor emerges. You can’t tell what diagnosis you’d fit on this actor… maybe down’s syndrome, maybe not. How nice for them, performing like this. Is this supposed to be inspiring? How can you experience the play without experiencing the disability? Are these actors really artists or are they just going through the motions as someone instructed them to do? Is it arty because their disabilities are entertaining? Riddled with questions and discomforts, a fissure opens and a new experience leaks in. This is not like anything you’ve seen before.

The play, The Most Fabulous Excitement, is an adaptation of Antoine de Saint-Exupéry’s universal parable, The Little Prince. It is performed by the Performance Art Group, an acting troupe comprised of actors diagnosed with a constellation of developmental, mental, and physical disabilities. From 2009–2013, The Most Fabulous Excitement was performed in churches, theaters, and gymnasiums throughout the Seattle area, its most frequent venue the dark and classic setting of The Jewelbox Theater, a beautifully intimate venue in downtown Seattle. The play is raucous and potent. It is bizarre, poignant, glittery, and artful. Its theatrical, musical, and visual elements are entry points that intrigue audience members and create a greater sense of engagement that complicates rote ideas of disability.

The Most Fabulous Excitement is a stand alone art piece that asks all those who witness to think deeply about how we experience and interact with disability. The play is a fruitful entry point for exploring how performers, facilitators, and an audience interact through an art piece and what abundant reconsiderations grow from the creative process and performance. Rich questions in the subjects of disability culture, art, activism, and agency are raised.

The production of The Most Fabulous Excitement arose from an intersection of motives and efforts: therapeutic, artistic, and activistic. Within Sound Mental Health (SMH), the Performance Art Group finds its funding as drama therapy in the promotion of skills transferable to jobs in the community. SMH is a health and human services agency providing for King County a breadth of services, among them vocational support for those with developmental disabilities.* Within the vocational program, counselors and support staff provide job training, placement, and sustaining support for clients in the field.

Drama therapy has a long history of serving these goals, but the play’s importance extends far beyond its vocational benefits. The earnest inspiration for the Performance Art Group and The Most Fabulous Excitement was less pragmatic and emerged from the artistic aspirations of the actors as well as Mental Health Specialists Teri Hammaren and Gino Yevdjevich, between them qualified as counselors, musicians, performers, advocates, and artists. The group’s primary interest was to produce and perform art for the purpose of telling extraordinary stories with extraordinary bodies. These performers are guided by the belief that artistic expression is intrinsic to being human and that all people have a right to expression regardless of relative talent.

A History of two Institutions: public social services and the theater

The Most Fabulous Excitement is avant-garde in both its art and its therapeutic origins. The production is possible through a marriage of two evolving institutions, public social services and the theater. Throughout the Sixties and Seventies, activists with disabilities transformed public social services in rejecting the medical model of disability which regarded those with physical and cognitive disabilities as essentially ill. The “Independent Living Movement” was created with the premise that disability is a social construction and that the disabled like other minority groups deserve protections under law to encourage equal access to the society.* This shifting premise made way for a systematic rethinking of the way people with disabilities are accommodated and provided for. Strong civil action made way for transformative public policy. Government services for those with disabilities were decentralized and public dollars networked to a multitude of private agencies whose paramount goals recognize an individual’s dignity and the value of integration with mainstream society.* People once unquestionably condemned to the the static isolation of an asylum are now, in best practices, living and working in the community.

In like ways, the theater transformed and decentralized with the creative movements of the Sixties and Seventies, propagating many new approaches to performative art, among them Community Theater. Drawing on populist histories from the revolutions of Russia and France,* Community Theater at its core rejects the attitude that theater is for the trained elite and instead promotes art and stories that are told from the perspective of a particular community, art made with voices directed in social expression and action.* This democratization rejects the traditional conservatism of theater culture which prizes artistic genius, competitive professionalism, and hierarchy* above humans’ intrinsic, organic, creative expressions, regardless of skill. Where traditional theater asks the actor to transform into an established character, Community Theater asks what an individual has to express and then crafts a performance around intent, ability, and message.*

In the spirit of Community Theater, and because of public social service’s growing and creative framework, a way is opened for the actors of the the Performance Art Group to make radical art that is beautiful, bizarre, and socially relevant. Through this art, people with disabilities express themselves to the public directly, creating a stronger presence in the larger culture by forging new patterns of artistic recognition.

To Be Seen: recognizing the person beyond the story

Historically, the experience of being disabled has been simplified by diagnoses and cliched tropes that suppress the authentic individual experiences of people with disabilities. Much public attention is given to people with unusual bodies and behaviors, but often hyper-exposed as objects rather than subjects. Freak shows held uncommon humans up as specimens to be ogled, while myths are riddled with giants, fairies, dwarfs, and oddities that narrate difference as monstrous. Inspiring fear and fascination, uncommon humans are the fodder of entertainment, legend, and horror and it is through these genres that we are too practiced at interpreting human variation as mythical and contained in story.*

As a cliched trope or diagnostic categorization, society experiences disability as both alien and alienating. When confronted with unusual humans we easily default to narrating these mythical and medical arcs so that we might contain, sort, and dismiss abnormality, relieving ourselves of existential and aesthetic angsts.* What is this? Monster or Human? Is that normal? Is there a name for this? A diagnosis? Am I at risk of catching this… abnormality? Could my family? Is life worth living like that? How do they overcome? Is there redemption from that state? What could they inspire for me?

We create stories to encapsulate uncommon bodies and behaviors making them digestible, unwilling to sit in the tension of gross difference. Michael Ignatieff claims the intolerance for human variation is a consequence of the liberal experiment, where sameness is fostered as a measure of equality;* and, like other casualties of the liberal experiment we find that ignoring difference does not foster equality or understanding. Instead, we invest in aversion and isolate incidents of human variation to appease our discomfort in the unpredictable. Maybe we can escape the consequences of age, disease, and genetic mutation if we rationalize disability as an uncommon, freak fate that exists somewhere far away from normal human experience, a state reserved for others, in story or place.

And yet, we are unfailingly attracted to the unusual, the grotesque, the strange. In response to what Susan Stewart calls the “conservatism of everyday life,” we prioritize that which is different as a way of sorting through a familiar world that tends towards convention.* A spectacle is viscerally magnetic, we crane our necks and strain our eyes; only the social intellect may sufficiently arrest this impulse, monitoring our taboo inclinations. Nearly every actor in the Performance Art Group has a bizarre appearance and comportment. If you encountered them on the street you may divert your eyes and ignore the presence of this uncommon person in a way you imagine to be respectful; or perhaps you would sate the compulsion to stare. You are uncomfortable, afraid to offend, yet compelled to indulge in the novelty this person represents.

Rosemarie Garland-Thomson complicates this uncertainty in her book Staring: How We Look, proposing that to be the “object of visual scrutiny is more complicated than being a victim of a fellow human.”* Humans have “a deep need to be seen, recognized, and validated for existing.”* To be looked at is to be embraced in recognition, a primal validation of our being… I see You. A stare communicates “the relational registering that we matter to another, even if our vulnerabilities are exposed.”* To behold is to empower the staree to return the gaze,* their personhood is affirmed, allowing a mutual encounter abundant with the potential to relearn the ways we interact.

Experiencing Disability Culture: a new way of seeing

The Most Fabulous Excitement is a deliberate opportunity to engage the stare, tell new stories, and reshape rote understandings of disability and disability culture. People with developmental disabilities rewrite cultural assumptions when they assert their bodies and behaviors through artistic expression empowered by the context of the stage. Expectations are challenged, “different skills, bodies, and subjectivities” are valorized, and the personhood they command on stage is larger than the one arranged for them off stage.*

Each role cast in the The Most Fabulous Excitement emerged from a unique actor’s abilities and is guided by the principles of equality and mutual value.* Those who are verbally able prerecord narration and dialog that is then edited along with the play’s score. With all audible aspects of the performance broadcast overhead, actors with able bodies and minds keen for cues have total focus for their corporeal expressions. The actors are empowered as they perform and are beheld in the totally radical act of being comfortable in their uncommon skin.

The Most Fabulous Excitement is effusive in its raw humanity, it is rabid in its positivity, unbound, fierce, and pumped with a frenetic energy. The play commemorates these qualities and tacitly situates them as part of a cultural practice unique to people with developmental disabilities. Featured is an awkward embodiment, distorted figures, unpredictable energy, bizarre patterns — a scene exalting what Garland-Thomson calls a “baroque beauty.”* Beauty that‘s composed in the “irregular, exaggerated, and peculiar,” in the tensions between “disease” and “comfort,” “decrepitude” and “beauty.”* The actor’s performance is energetically and visually arresting.

New images are created and a scene is set for the outsider; here is a community with a distinct culture, its own aesthetic language. The audience is given an explicit invitation to stare and the physical space between stage and seat to process anxieties.* Apprehension is converted to recognition for the subjects and anticipated boundaries are ambushed as we “draw close to strangeness and see something of ourselves.”* The Art is an agent of social justice, complicating our notion of beauty, challenging our consensus on personhood, conferring dignity on those often denied.

The Play Interacts: the actors’ bodies amplify themes

The play’s potency as a social and artistic force relies entirely on the actor’s uncommon embodiment. Caroline Walker Bynum tells us that “Shape or Body is crucial, not incidental to story. Shape is in space what story is in time,”* and extraordinary shapes make extraordinary stories. In The Most Fabulous Excitement, the baroque, incongruous qualities of the actors’ bodies and behaviors challenge our mediocre need for procedure and predictability. An entreaty parallel to the message conveyed by Antoine de Saint-Exupery’s protagonist, the Little Prince. Morose and fantastical, the story of The Little Prince is parable warning against the trappings of false certainties, power, resignation, greed, obligation — a perfectly normal life.

The Prince leaves his home planet of B-612 after growing disillusioned with his true love, the abusive yet vulnerable Rose. Traveling the universe on a flock of birds, he stops at random planets, each one an encounter with a pitiable character, isolated and in thrall of their own moral failings: the Queen, obsessed with power and petty control; the Drunk Man, torpid from depression, bitterness, and shame; the Businessman, a hollow capitalist, slave to the accumulation of money; and the Lamplighter, the archetypical worker-bee madly driven by unquestioned obedience, victim of bureaucratic exploitations. On the final planet, the Prince falls to despair at the universe’s paltry offerings, a menagerie of beings suffering in isolation, when he encounters the Fox who bestows the climactic truth: To remove the veil of suffering we must learn that the important things in life are only visible to the heart.*

The Performance Art Group edit and alter the original Little Prince mostly by omission, but most substantively by letting the Little Prince live at the end of the play instead of facing a Christ-like death as written by Saint-Exupery. In their interpretation the audience feels that the Prince is redeemed with awakened wisdom and we might imagine he and the Rose reunited in a homecoming. To love the Rose is to know her as she truly is, beyond the illusions of socialized materiality. The essential message that “one sees clearly only with the heart” is recorded in chaotic overlap and plays to the darkened theater as the actors emerge in troupe from backstage, illuminated only by the candlelight they carry. The theater flashes to light and on stage the actors of The Performance Art Group stand, in strange shape, glittery, extraordinarily uncommon, baroque and beautiful.

The Little Prince asks us to abandon our materiality as the actors remind us of just how embodied we are: a juxtaposition that forces existential curiosity. We are both bound and unbound in the presence of a radical beauty and it is in this tension that we find a “productive discomfort” through which a recognition of our shared humanity becomes available.* In the rich moments where audience and actors reciprocate a personal recognition, carrying on our own redemption feels possible, too. With Art as intermediary and the actors as our intergalactic guides, we experience a new way of seeing disability; it is beauty as social justice work, and the context of theater for such a discovery is excellent.

Those Standing By: support staff, artists, and individual agendas

The crowd goes raucous and the actors are buoyed to manic heights by a torrent of energetic applause and hooting, still elevated by the context of the stage, smiling, dancing, raised arms absorbing the palpable recognition for their talents and compelling expression. In this moment all support staff conspicuously recede. But the artistic genius of director Gino Yevdjevich’s looms large; many in the audience knowing the genesis of the play is from his unique experiences as artist, performer, musician, and counselor, the soundtrack carried by his voice and singular sound from his popular band Kultur Shock.* He says a few words, but the picture in focus is a radically empowered and creatively driven cast expressing a message of social justice; but that frame omits tangential interests and motivations. The professional staff and volunteers who make The Most Fabulous Excitement possible bring their own agendas that interact and overlap with the art and the actors.

The Performance Art Group and the production of The Most Fabulous Excitement is made possible by mental health specialists, residential and vocational support staff, volunteer support staff, and volunteer artists and musicians. Most paid and volunteer professionals also fall under the category of “artist”, and all listed may be starkly categorized as not cognitively disabled. In contrast, most actors are on the severe end of a spectrum of cognitive disability and are heavily dependent on paid residential, medical, and therapeutic staff to monitor and buttress nearly every action in their lives: food prep, medications, communication, activities, transportation, and financials. And while in best practices these professionals are upheld as advocates for people with disabilities, each has their own motives that have real impact on the supported person’s life. An example of this is illustrated by Josh Carter, expressing his rage in a recent interview.

This is an example of a very common tension between a “client” and “staff.” The residential staff is tasked with supporting their client’s official “program goal” of wearing normal clothing. A typical objective for many people with developmental disabilities in an effort to reduce stigma by promoting appearances and behaviors that blend with society. Since playing the Businessman, Josh has channelled aspects of the character into his own life including wearing suits, the costume of the character. It is evident that Josh feels self-confident and empowered in the classic cultural emblem of masculinity and success. Suits, however, do not conform to Seattle’s fashion norms so in wearing a suit Josh looks eccentric. He is also discouraged from wearing his polar bear costume, a favorite in his wardrobe worn to express his joy and pride at being part of the Polar Bear Plunge,* a club that jumps in the frigid Puget Sound every New Year. While Josh’s support staff is trying to promote the goals of his program, sometimes the positional authority the staff wields is administered in a way that disempowers the client. Josh wanted to wear his suit for the interview about his role in a play that commemorates his baroque eccentricities, yet he is subject to a support system that values acculturalization to mainstream mores over self expression.

Likewise, the professionals tasked in supporting a client’s occupational goals focus on developing skills that help the client “perform able bodiedness,”* and for this Drama Therapy is particularly adept. For actors with severe developmental disabilities, rehearsals involve learning the mechanics of a certain gesture and the ability to repeat it on cue. To the actor, the meaning imbued in the gesture may not be present, but as interpreted by a cognitively able audience member, the actor is performing a gesture significant with social meaning. In the process of learning to act, clients refine skills like gauging bodily proximity, relational volume control, evaluating the energetic tenor of a situation, sustaining focus, and sublimating impulses.* If the actors can master these skills they might be employable in a standard food, flowers, or filth job typical for those with developmental disabilities.* And while that goal may seem meager, the experience of being a contributing member of society has profoundly affirming effects on a client’s sense of personhood and self-confidence.* Here, actor Jeff Foster articulates his philosophy of feeling connected through meaningful contribution in the workplace.

The Performance Art Group is run with the values of inclusivity, equality, and mutual value. Gino Yevdjevich, Teri Hammaren, and associated staff and volunteers interact with the actors in a manner that assumes cognitive ability in the actors. This is evidenced by the direct and demanding attitude in which rehearsals and performances are conducted. There is indeed collaboration in generating the art, but the clients are also subjected to the reality of a practical director who is driven by a resolute creative vision. Flights of individual ego and fantasy are not a permitted intrusion; it is not a gentle atmosphere, but it is one that confers dignity and respect to the clients as professional actors rather than subjects receiving treatment. If you ask the actors, they participate and are enriched by the Performance Art Group for the artistic expression and not as a means to employment, at least not in a field other than acting. Here is actor James Clark relating his experience of the themes of the play as well as the good humored rigor the actors are held to in rehearsal and performance.

For most of the actors, performing in The Most Fabulous Excitement is an extraordinary life highlight. Performing for an audience comprised of people from their community — family, peers, support staff, as well as the unnamed block of audience members who for them seem to represent the general public — is not only an affirming experience but also “enhances the actors status among their caregivers — having real positive outcomes in their lives.”* The Performance Art Group and other offerings from SMH aim to maximize opportunities “to combat isolation of people with developmental disability whose interactions with others are primarily held in the care/medical model.”* Isolation reinforces a lack of social skills and promotes a kind of egocentrism that is deeply reinforced by many clients’ existential dependency on staff around them to feed, medicate, and care for them.*

While some therapeutic objectives meaningfully support a client in affirming their personhood, promoting self-confidence, and meaningfully involving them in community, other objectives inadvertently squash the autonomous expression of the person they are trying to best serve. The Most Fabulous Excitement professes a baroque spectacle celebrating humanity in its most essential state, fantastical and flawed, entreating us to drop our attachments to social materiality and the trappings of conventional beauty. The play, however, is still produced by an institution and in a society that is bound by the very trappings the art reveals. Until the society makes radical progress in valorizing the uncommon bodies and behaviors unique to people with disabilities, integration will inevitably include training them to comply with a consensus on normality.

Those Standing Up: activism and a new public recognition

While the therapeutic approach is integral to the Performance Art Group’s genesis, the content and the very act of performing The Most Fabulous Excitement is deliberately activistic. Stereotypes that undermine the actor’s dignity and personhood are challenged when people with uncommon bodies and behaviors demonstrate their capacity for diverse emotional experiences and extraordinary expressions. The actors engage the public’s stare, demonstrating their radical comfort in uncommon skin, demanding to be held in the “visual regard of another.”* This is art in the service of social justice, what Rosemarie Garland-Thomson calls “visual activism.”*

When artists thoughtfully frame uncommon people as complex subjects they challenge the public’s ideas of humanity and normality. Notably, mid-century photographer Diane Arbus photographed “dwarfs, giants, transgender people, nudists, and circus performers”* with a tender lens that portrays subjects in familial settings that emphasize their casual humanity. Through her lens she intimately frames the real and complex personalities of people with extraordinary bodies. Her subjects look to the camera engaging the observer as their emotional life is held by the artist as something worthy and beautiful.

Likewise, twenty-first-century painter Doug Auld creates portraits of burn victims, juxtaposing extreme human deformity with the stylistic perfection of classical painting.* The classical style of portraiture confers a seriousness to the subject and exudes a tone that announces the importance of the person being considered. An uncommon human with a face swirling in scars stares out from the painting, eyes empathic, both inviting the stares of the public while deeply engaging the observer in the subject’s acute gaze.*

This spring, Seattle photographer Matt Lutton* came to the Performance Art Group to take the actors’ portraits in the spirit of other artists who commemorate the extraordinary. His intimate and pragmatic style portrays the actors’ strangeness, beauty, and myriad temperaments. To focus on people with disabilities as the subject of art is to endow their being with the recognition of being seen. It’s an acknowledgement that the actors buoyantly accept, dressing ahead for the occasion, envisioning these portraits printed so they may show their staff and family: Look, someone wanted to take my picture. See me.

When the actors are given this personal recognition, the audience is engaged in reconsidering their own perceptions of humanity. Such a scene is activistic, asserting the rights of people with disabilities to hold a reciprocal place in the public sphere. It is with this recognition that people with physical and developmental disabilities will know the validation of acknowledgement in the society.

A Jeweled Frame: the context of the art matters

Petra Kuppers, in her book Disability Culture and Community Performance, tells us that “art is created in the nexus of physicality, practice, institution, and ideology.”* Art carries not only the original intent of the artists, but absorbs the context in which it’s shown. The setting is integral to the observer’s assessment of the art and has the potential to either frame a work with gilded authority or present the work with the informality of a push pin.

The Performance Art Group performed several times to sold-out crowds at The Jewelbox Theater,* located in the Belltown neighborhood of Seattle, an area known for its hip crowds and trendy nightlife. The Jewelbox has saturated red velvet curtains, tall black varnished ceilings, a professional sound and lighting system, and a green room full of graffiti and the iconography of quirky arts culture. The scene sends a distinct message: These are artists with a radical creativity worthy of beholding.

Early performances of The Most Fabulous Excitement were held at Fircrest Residential Habilitation Center,* a facility that provides the kind of state institutionalized care that was phased out with the success of the Independent Living Movement. Fircrest remains a spooky remnant of another era, originally built as a Naval hospital, the campus is imbued with the perfunctory austerity of military architecture, circuitous and eerily insulated from the rest of the city. Many of the buildings are unused and rattle with wind, sheets of eroded paint blowing at their facades. The inhabited buildings house people with disabilities so severe that they are unable to live outside a medical setting. The aging carpet does little to soften the noises and smells of human decay.

The chapel at Fircrest, with its stained-glassed light and brown tones, was the debut venue for The Most Fabulous Excitement. It lent the production a quaint, but haunting tone that accentuated the actors’ disabilities and reinforced the worn trope that people with disabilities are darling in their inspirational ability to overcome challenge and adversity.*

In contrast, the regal setting of The Jewelbox frames the Performance Art Group in the resonant authority of a classic arts space, suffusing the uncommon subjects with the formality of a traditional theater, imbued with history and cultural relevance. The setting has an affirming effect on the actors and confers artistic legitimacy to their work. Compared to early performances at Fircrest and the occasional gymnasium, the show at The Jewelbox attracted a diverse crowd of people from both from the general public and those associated with the actors personally and professionally. In 2010 The Most Fabulous Excitement attracted so many art lovers that the actors performed an encore show in order to seat a second packed theater. The atmosphere created at The Jewelbox on that night was a model for what a reciprocal place in the public sphere looks like for people with developmental disabilities. When the actors are beheld in this thoughtfully gilded frame, they know validation in the society without assimilation.

Abnormal Art: the risk of eclipsing a subject’s agency

Artists like Diane Arbus and Doug Auld thoughtfully frame their uncommon subjects for those in the average world to behold; the images are affirming and have a greater social impact that is directly relevant to the subjects. Their work, like The Most Fabulous Excitement,

pushes the comfort of the audience and challenges expectations of society. But, that relevancy relies on the artist’s ability to access people who naturally assault the comfort of the larger public. When people on the periphery become an attraction to artists looking for subjects to challenge the public’s comfort, marginalized people may become a commodity by which artists advance their own artistic aspirations. While the artists who take up these subjects are actualizing their archetypical role as seminal revealers as they confront the public, unwrap superficial understandings, and demand reconsideration of perceptions, they act as self-elected envoys framing extraordinary bodies for display as they see fit.

In considering this art, we’d be negligent not to ask how engaged the subjects are in creating the meaning the art expresses. Are the subjects merely affirmed? Does the artist use their uncommon bodies as symbol and metaphor? Are the subjects party to the message they are used to construct?

In the case of The Most Fabulous Excitement, the play as a work of art unashamedly gains from the public’s fascination with disabled bodies and behaviors. The actors are gritty, some with extreme behavioral patterns, and some with extraordinary physical characteristics. They feel eccentric to those living in the average society. While the actors are deeply integrated in the creation and production of the play, many of them do not possess the cognitive ability to understand the message of the art (“wise people see only with their heart”), or the effect their uncommon bodies have in eliciting the existential curiosity that makes The Most Fabulous Excitement so relevant.

While The Most Fabulous Excitement inarguably commemorates the dignity of the actors and the qualities of disability culture, it also positions the actors as metaphor for the audience members’ self-reflection. Their presence is called to represent more than their essential, individual beings when their abnormalities are situated symbolically in the exploration of what is bizarre and what is socialized. As the actors’ disabilities amplify The Little Prince’s message, their bodies are situated to exemplify a divergence with socialized normality. The actors’ extraordinary bodies on stage may be interpreted as the embodiment of social deviancy and counterculture, or as a stand-in for marginalized people in general.*

How do we tell when an uncommon subject is used in the production of impactful art rather than thoughtfully valorized? By what measure can we gauge when or if an artist’s vision may eclipse the agency of their subject? Sometimes, the artist’s vision eclipses the agency of their subject.

For example, Joel-Peter Witkin is a contemporary photographer who creates black and white assemblages of graphic nudes, dismembered bodies, grotesque death, and uncommon humans. As Witkin features human abnormality, he does not valorize the bodies and experiences of the people he photographs; instead, he uses the bodies of “dwarves, transsexuals, intersex persons, and physically deformed people”* as metaphors of social deviancy. His images fail to represent his subjects as emoting a complex emotional spectrum. He instead exploits their extraordinary bodies as symbols of transgressive human behavior, equating uncommon bodies to psychopathic behaviors like beastiality and necrophilia.

Artists who exploit extraordinary bodies as symbols purport to display an unfiltered humanity, asserting that were we free from constraining social conventions our deepest natures would emerge rapacious and ravenous for violence at extremes. Witkin plumbs what he imagines to be the human subconscious and finds a dwarf and miniature pony in every dream, a shallow and silly rendering with real, negative impact. When images of extraordinary bodies are used as metaphor for social deviancy, stigmatizing tropes are hardened into the social regard for people with disabilities, overwriting the real experiences of people with uncommon bodies.

A New Special: the danger in asserting a digestible trope

While the Performance Art Group aims to shed monstrous tropes of disability, at times a new essentialism is exalted that upholds people with developmental disabilities as more authentic than the average human. Like the Surrealists and Dadaists looked to the subconscious to reveal fundamental human natures,* some look to those with developmental disabilities as symbols of unadulterated human impulse. People with developmental disabilities are upheld as a kind of oracle articulating the truth of the divine human brain unpolluted by confining social expectation.

People with developmental disabilities are celebrated as radical people, unfiltered in their desires and deeds. They are extolled as consummate individualists, uniquely true to themselves, and exceptionally emotive.

These are qualities that we celebrate in the larger culture and collectively hold in the belief that with freedom, and confidence an individual might actualize their authentic self. We deem people free spirits, naming them so for their singular individualism in a life uninhibited by shame or convention, an archetype that glorifies the unique, and holds quirkiness as a signifier of self sufficiency and freedom from anxiety. Through this lens, those with developmental disabilities who exhibit poor personal hygiene, eccentric dress, and unpredictable behaviors are interpreted as living free from convention. When in reality, poor personal hygiene may indicate a lack of care from residential staff, eccentric dress may be an earnest attempt by the individual to look normal, and unpredictable behaviors are a burden to the human who bears an unstable physiology.

People from the audience of The Most Fabulous Excitement will often remark on the incredible enthusiasm of the actors, or how brave it is for them to perform. These comments are accompanied by the subtext that the actors’ enthusiasm is remarkable because they have so little to be enthused about, being bound in their abnormal bodies and behaviors; that they are brave to perform because it’s assumed more natural to hide abnormality than to force recognition. They are congratulated on their persistent positivity and their egolessness, qualities that The Most Fabulous Excitement upholds as facets of disability culture, but also qualities that the audience is in danger of simplistically interpreting as an exalted essentialism innate to all people with developmental disabilities. This would be a gratifyingly sentimental takeaway that does more to erase an actor’s individual experience than to commemorate it.

Do the artists and professionals associated with the Performance Art Group sentimentalize the experience of being disabled? Compared to other theater produced by people with developmental disabilities, the Performance Art Group prides itself in not performing a cute rendering of disability.* There is pride that not all the actors are high-functioning people with Down syndrome, as people with developmental disabilities are almost exclusively portrayed in mainstream media. There is real effort not to varnish the experience of being disabled with saccharine tropes of lovable folks ready to overcome adversity with their positivity alone. However, in attempting to amplify the beauty of the developmentally disabled community, it’s possible a new special is shaped that celebrates the bizarre and the beautiful without complication.

The Actors: their experiences in their words

Depending on cognitive ability, the actors of the Performance Art Group understand the articulated themes of the play in varying degrees, but all undeniably feel the affirmation of public recognition when they are thoughtfully beheld in their art. Some are unable to conceive of themselves as having developmental disabilities,* so ruminating on the ways their bodies are represented to the audience is not possible. And while we are not able to have the actors’ informed endorsement of the way disability is portrayed in The Most Fabulous Excitement, the pride and pleasure the actors express at being part of the production lends credibility to the claim that the art is created with the principles of inclusivity, equality, and mutual value. It’s indisputable that participation in the Performance Art Group has enhanced the confidence and quality of many of the actors lives.* This interview with actor Shawn Giger illustrates how some of the actors are enriched by the Performance Art Group though they are not able to understand the themes espoused.

Susan Erickson, on the other hand, connects deeply with both the process of getting into character and the themes of The Most Fabulous Excitement. Professionals present during her interview were struck by the depth of feeling she expressed when talking about acting and performing. One mental health specialist exclaimed that this was the most they’d ever heard her talk on any subject, demonstrating the affirming effect participation in the Performance Art Group has had on her confidence and communication.

The actors’ disabilities are on display and so integrated with the characters that, for the audience-goer, disabilities may seem more performance than physiological exigency. In one performance, Anne Gerbic, who plays the part of the Narrator began to have a dissociative episode on stage, engaged in conversation with personal voices. Those in the audience with no background in the mental health field were laughing heartily, assuming that Anne’s behavior was a comedic facet of her intergalactic character. Her mumbling conversation with herself fit the chaotic tenor of the stage and scene, and worked well with her costume, an exaggerated headset and a stark white hazmat suit.

Professionals supporting the actors hurried to rush Anne off stage at the scene change, concerned that the pressure of the performance pushed her in a way that was detrimental to her mental health. Anne maintains that she would like to keep performing, but it’s unclear to professionals of the Performance Art Group whether or not Anne’s disability revealed on stage becomes an exploitative display of disability rather than a thoughtful integration with the character she’s portraying. Anne is often in conversation with herself as you can see in this video. Should her disorder be hidden or integrated? To what extent can we trust the expressed agency of a client?

Actor Elizabeth Rogers is a clearer example of an actor’s disability being thoughtfully integrated with a character. For her costuming we ask that she come as she is. Her performance of the Drunk feels rich because the torpid mannerisms of the hopeless are the authentic patterns of her gesture. She walks onto stage in dilapidated clothing, hanging at her limbs in exhaustion, she pulls behind her a wagon laden with accoutrements, most notable among them her stuffed animals that she has authentic familial attachments to; they are her children and she their loving mother, each with a developed personality and preference.

Elizabeth experiences anxiety in advance of a performance but so far has hit every cue to enter the scene, even if reluctantly; grumpiness fits the character, after all. She asserts that she likes to perform and she is dedicated to attending weekly sessions of the Performance Art Group. The audience experiences Elizabeth’s uncommon qualities as part of the performance, but her acting is a small part of her large effect on stage.* Here in her interview she slowly establishes without embellishment that she likes performing and wants to continue with new productions.

Josh Carter’s personality is also well integrated with his characters of the Businessman and the Fox. Josh is something of the muse of the production; he is hugely communicative, super positive, emotive, and open to connecting with all participants of the Performance Art Group. In this interview Josh is seen totally self-contained and self-confident in his business suit explaining highlights of performing and the breadth of his acting career, including his role in Samuel Beckett’s The End Game and roles in training videos for the Seattle Police Department and other educational videos. You can sense the tenor of the group through the laughter and exchange at minute 1:40 when Josh tells the author, “I don’t want to spoil it for you, watch the scene and you’ll find out,” in response to a question trying to tease out the darker themes of The End Game.

Josh perfectly illustrates the balance between great respect for creative output and a lighthearted permission to not take yourself too seriously. This is a balance we may recognize as a facet of Disability Culture. Among people who are brimming with idiosyncrasies there is a lot of expressed emotion that is as easily discharged as it is asserted.

Director and Mental Health Specialist Gino Yevdjevich explains the rigor to which he and colleague Teri Hammaren hold the actors during rehearsals and performances. Throughout these interviews the subject of a demanding atmosphere arose as a key element in making the Performance Art Group capable of making a stand alone art piece like The Most Fabulous Excitement, as well as a supportive and productive therapeutic setting that promotes the actors’ self confidence and affirms their personhood. Gino reiterates the underlying premise of the art presented by the Performance Art Group that people are intrinsically creative and their expressions valuable; therein is the talent.

Conclusion: know it now so you might know it again

The Performance Art Group continues to make landmark art that pushes the public’s comfort. An adaptation of Samuel Beckett’s The End Game is currently in production and in it actors take on the themes of end of life care, quality of life, and positional power dynamics between caregivers and those cared for.

We hear through the actors’ voices and see in their smiles the glow of recognition that performing provides them. Make no mistake, this is a rare experience for people with developmental disabilities, but hopefully not an anomalous one.

The work of the Performance Art Group walks an elegant line between valorizing people with developmental disabilities and confronting the public with a bizarre tableau of uncommon bodies and behaviors. The actors assume the roles of artists, and become the seminal revealers as they demand reconsideration in the glow of a gilded frame. Their art stimulates existential curiosity, commanding the audience to lean forward into the light of an ignited scene. A complicated beauty is presented, a reckoning with our standing assumptions is forced, and the effect is to bring the experience of being developmentally disabled into the stark light of the public eye.

We are shown possibility. We are treated to a glimpse of what an inclusive society looks like. One that exalts and complicates the baroque, the odd, the unfiltered; and, the effect is decidedly bizarre and terminally beautiful. When next you are confronted with a person of peculiar visage, of puzzling movement, of unpredictable comportment — know that this person is among the extraordinary and you will both mutually gain in your second look, your sustained stare, your invitation to know one another beyond the tropes that bind us.

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