A Long, Strange Trip

A chronicle of my development - personal and artistic - spans thirty years plus. Up until 1980, I lived life within the bosom of a middle-class-Caucasian-white-collar-Protestant-American family. My growth and maturation progressed at a fairly usual pace, and I consider I had as "normal" a childhood as most people. My father took a position working for the Armed Forces in a civilian capacity, so we moved regularly every few years or so. In my thirty-eight years I have lived in: Arkansas; Hawaii; Canada; South Dakota; Minnesota; England; Holland; Wisconsin; South Carolina; and Georgia. Though it might take a psychology major to describe it, I am certain that this variety of habitat and environment had a significant influence on my development; from my internal perspective, it's been fun and fascinating, albeit at times frustrating as well.

The most dramatic and memorable moment of my life to date, which occurred during my sophomore year as a college co-ed, also stands out as a major turning point in my personal evolution. My path very unexpectedly altered when I took a twenty-seven foot fall off the top of a ladder in a theatre, as a twenty year old Theatre Arts major.

[ Sitting up slowly, CLARITY slips the sheet off her legs, turning to face the audience in a kneeling position. Reaching up with her hands, she enacts the following... ]

I climb the ladder one step, one rung, one hand at a time. I reach the top. Over my left shoulder, the proscenium stage. To my immediate left, the two-hundred-fifty-seat auditorium. I see Tyler up in the catwalk, coiling a long snake of lighting cable. In my head, I hear the words "Good-bye, Tyler."

[Her hands open, she lowers herself back down on her haunches.]

This is bad! I'm falling; I'm going to hit the fl--- [Slaps her hands palm down, hard upon the floor, making a loud thud.] Ow. [She slips under the sheet once more.] I lie supine. Immobile. Ambiguous. [Sliding her hands across the whiteness of the sheet, then raising them up outstretched towards the ceiling.] Surrounded by vast expanses of dim, white clinical odors. I sleep. I sleep a lot.  [She breathes deeply, then bolts up suddenly, with a cry of fear.]  Ah! I'm awake. I'm not dreaming; not falling. I'm awake, I'm okay, I'm awake, I'm okay, I'm okay, okay.

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Of course, it was several years before I was actually "okay," and writing the play [1] from which the above excerpt is lifted became part of that process. This incident is a defining moment in my life; not THE defining moment, but one of a series of such moments. While I consider my disability to be an important aspect of my development, lifestyle and personality, I do not consider it the primary nor fundamental factor. A colleague once asked me if I consider myself "an artist, a woman artist, or a disabled artist?" and I was slightly flabbergasted by the question; my first and most immediate response was to answer, "Which day? Which project?" I call myself a Theatre Artist, one who happens to have a disability. Being a woman and being a theatre artist are the only two things I've ever bled for, which makes them meaningful factors in the description of my Self.

The task of putting something about One's Personal Evolution on paper is one that elicits bouts of ambivalence, in this writer at least, but I agree with the author who noted that everyone should write something about their lives - and I reckon a Master's degree in Literature ought to be good for something, eh? As an exercise in taking inventory of myself, I typed out a full and complete resume of my work (to the best of my recollection) since the very first show I was in, as crew or cast; that dates back to 1976. (Prior to that time, I was essentially a precocious child who really enjoyed being the center of attention, for whatever reason, but those moments in the lime light don't actually count as resume credits.) It's a seven page resume, so I won't reproduce it here; but it was an interesting exercise. Some of those production experiences I recall in great detail and with full pleasure; some I barely recall at all, and that's how I prefer it. Yet every show I've worked on during twenty-plus-years in The Theatre has influenced me in some way, profound or mundane, sometimes both.

The year I graduated from high school, I was dashed and disappointed when I did not receive the Best Actress award; mere moments later I was flustered and surprised when I was awarded the Best Thespian Trophy. Twenty years later, I still have that little statue - it sits next to the little purple statue that is my "Indie," an award I received in 1995 from the 3rd Annual Indie Awards, hosted by Santa Barbara's Independent newspaper. The project that earned that award was a fairly powerful influence upon me, and my development. Belle's on Wheels, which I still tour to venues across the country, was my Master's dissertation project at the University of Essex, where I did my graduate work; it's a one-woman, autobiographical stageplay originally conceived, written, and produced in England during 1988-90. In 1994, several years after my return to the States, I pulled the script out of storage and reworked it into an updated form that more accurately reflects my internal artistic vision. The process of generating this dramatic text, and later its theatrical performance, launched me onto a path of self-reflection which I tread still, on a more or less daily basis. Every day I wonder a little bit about "things I am and things I am not." [2]

As one of my favorite musician/poets writes, "I'm just trying' to get by / Being quiet and shy, in a world full of pushing and shove."[3] I don't always know exactly what or "who I am," but I am getting clearer about what I do not want to be; I don't want to be "part of the problem."

In retrospect, I believe I was deeply influenced by an early introduction to the Arts. My five year old toes were found not only in tumbling class, but also in tap, and eventually even a few years of ballet lessons; I had enough ballet to understand that I am NOT a ballerina, but that I do love dancing. The first ballet I ever saw performed was The Firebird, and the first play I ever saw was The Sound of Music, with Jane Powell, which played at the Little Rock Arts Center when I was six years old; I still get teary-eyed every time I watch that flick.

I didn't really know that I am a survivor before I broke my back, but since that episode, I have learned that it's true. I am a survivor. I have survived more than I can detail; during those times when Life is happening to me while I'm busy making other plans, I may not know how or when I will successfully address a difficulty or challenge, I just remember that I am a survivor, and I will. Survive. Sometime during the repeated therapeutic experiences I have undergone with various characters from my life, I learned an important phrase, a little thought, that has become a sort of mantra for me: "I refuse to be defeated by_________."  I fill in the blank with whatever is currently threatening to overwhelm me - fear, apathy, frustration, low self-esteem, lack of money, another person's craziness, etc.  On some days it's a bit simpler: "I refuse to be defeated."

Prior to becoming a wheelchair user, I'd never really experienced oppression or bigotry directed towards me personally; of course I'd witnessed it, at times without even knowing what it was I witnessed. Once I had a set of wheels under me, that began to change - noticeably. I found out exactly what it feels like to be utterly invisible. One of my clearest experiences of that phenomenon - being invisible by virtue of being seated in a wheelchair - was in the early 80's, at an arts event, a reception for an art exhibit attended by approximately two thousand people. As I sat enjoying my egg roll and complimentary wine, I realized that I was one of two people I'd seen in wheelchairs at the reception. I couldn't help thinking "Where are we?"

I found some of "us" on a canoe trip, during the summer of 1981, an experience which profoundly affected my changing perception of Self. During a week long trek through the Boundary Waters region of northern Minnesota, I reclaimed some of my physical strength and emotional confidence, in addition to rediscovering a joy in Nature and things green – a legacy from my father and his habit of tromping through the woods with (or without) dogs. These days a well – groomed trail is helpful; while I do at times miss the fun and adventure of taking off into the Wild Woods without benefit of an actual path, I still enjoy "being out with the dog." It serves to remind me of what I consider to be the more authentic priorities of life – "eat well, get petted, sleep a lot, dream of a leash-free world." [4] And I've kept the group photo taken on that canoe trip, seventeen years ago – a black and white print of a dozen or so people gathered around a campfire, covered with soot and sweat, but smiling nonetheless. I look at it sometimes, and it serves as a reminder of the distance I've traveled since then, both physical/geographical, as well as emotional/psychological/spiritual.

I used to notice people's responses to the wheelchair under my butt a lot more than I do these days. I suppose over the last eighteen years I've become habituated to the spectrum of responses that seem most common, which usually fall in the middle ground between Utter Invisibility and Super Gimp Syndrome. I'm not invisible nearly as often as I used to be, in the years prior to the ADA and the Disability Pride movement. Still, there have been times when I have felt genuinely surprised by the responses my presence has elicited from certain individuals.

In the Summer of 1983, I was working with a group of women on an original theatrical production in which I played the role of Emma Goldman, and after sitting in on and observing a rehearsal, Starhawk (whose book Spiral Dance [5] later influenced me greatly) asked me to tell her "… again why Emma Goldman uses a wheelchair?" I was a little confused by the question, and my somewhat awkward response was -"Because Jaehn does!" Later, I was amused by the question, and I was even able to see the humor in my response. I had "passed" for non-disabled, even though I was sitting there in a wheelchair. This experience continues to effect the way I perceive my Self, and the ways in which I perceive non-disabled people.

In the winter of 1989, I participated in an Acting Workshop with a well-known theatre artist/teacher in England. At the beginning of the session, when I introduced myself to Mr. Barker, he commented "There are no observers in my class, only participants." I eagerly agreed with that position and assured him that's why I was there, to participate fully. As he began one of the exercises, he turned to me and said "Why don't you sit this one out; it could get dangerous." I held back; later on in the workshop, he remarked to another participant who was sitting with me, "I'll sit with her if she needs someone to hold her hand." I suppose Mr. Barker is justified in thinking I overreacted when I withdrew from the workshop, and demanded a full refund of my registration fee - but I had a very strong emotional reaction to his behavior towards me and his apparent assumption of what I could and could not do. I think what I most resented was not being "allowed" to make the attempt, even if I was doomed to failure. He simply assumed I was not capable of participating in a given activity, and swept me aside in the wake of his own narrow-minded assumptions regarding what an actor in a wheelchair is-or is not- capable of in a workshop setting. I had to work very hard to find a way to let go of the anger - the rage - that was my first response to that experience.

Fortunately, the following winter I had a much more positive workshop experience, with an actor from The Renaissance Players, an English troupe which toured to the University of Essex during the year I studied there. As he was gathering us into a circle for warm-up exercises, he turned to me and remarked, "I've never worked with an actor in a wheelchair before; let me know if I can help in any way, or if you need anything." Following that, he basically left me alone, allowing me to participate to the best of my abilities, and encouraging me when I needed it. I was struck almost speechless by the simple graciousness and common sense he practiced in that circle; by treating me as if I were capable and competent, he empowered me to believe it of myself, and to BE it. This became a strong influence on my development as an artist, and later as a workshop leader myself. This artist demonstrated to me, and other individuals present in that workshop, that it is possible to maintain one’s artistic integrity, and at the same time be inclusive of people with disabilities, without compromising the quality of the work, and without making a big deal out of a need for accommodations.

One thing that continues to effect me is hearing repeatedly - primarily from friends, people who know me fairly well - "I don't think of you as disabled," or "I forgot about the wheelchair." The first time I heard this comment, I thought "What? Is that supposed to be a compliment? How can one forget about the wheelchair?? What am I supposed to say -Thanks???" It's strange, but I seem to have become accustomed to this comment, having heard it over and over again yet I still don't quite understand it, nor know what to say in response. Usually I just sort of grin, rather ruefully, I 'spose. While I do want to acknowledge the fact of my paraplegia as a factor in my growth and my life, I don’t want my physical disability to become the definition of who I am, or what I am capable of doing. That negative prefix "dis-" can be such a misleading little syllable! I never "forget" that I am paraplegic, and that I live with a so-called "disability," but there are times when I just don’t think about it that much. I don’t experience myself as a member of "disability culture" as often as I experience myself as part of human culture. Perhaps that will change as we enter the next millennium, and the Disability Rights Movement continues to grow and evolve.

I have noticed during the past thirty-plus years that I am consistently influenced by other people-- primarily, the individuals in my life who move me most, whether to feel more deeply, to think more clearly, or to push myself farther than I think I can go. Of all the folks who contributed to my recovery process following my injury, Jeannie Kogle, the physical therapist who worked with me on relearning how to live in my body, influenced me most strongly. Jeannie offered me a choice - she told me I could be a wheelchair user, or I could work on being ambulatory, using a pair of leg braces and crutches. At first, I was dead set on walking - I suppose I had some notion of being able to escape the stigma attached to being a "cripple" (sic) if I was not actually seated in a wheelchair. After struggling with my walking skills, and various other physical factors that came into play, I realized one day, quite simply, that for me there really are more important things than walking. If it hadn't been for Jeannie, I would have assumed that if I could walk, I was somehow obligated to do so, no matter the inconveniences, the struggles, or even the sheer physical discomfort. Following that minor revelation, learning to use a wheelchair became less traumatic, and I gradually allowed myself to enjoy the fun of being able to roll downhill, passing pedestrians and even the odd bicyclist, with my hair flying in the breeze. Once in a while as I whiz by I hear someone say, "What was that?" a response which never fails to bring a smile to my face.

The support system that has developed around me, which includes my parents, both my siblings, and a handful of friends that have remained true-blue over the years, has influenced me by affirming that I am valued by other people, and by validating my belief that the "essential Jaehn" is still in here, within the body labeled "Disabled" by cultural definitions of so-called Normalcy. This network of people has become a sort of anchor, that helps me hold true to the center - my center. To paraphrase Lao Tzu [6], "she who does not lose her center endures." The feeling of being supported, encouraged and valued by this circle of Loved Ones serves to remind me that one of my personal priorities is loving people, and doing it well. In fact, I suppose I'd have to admit that doing things well is one of my fundamental values - my parents taught me early on, if I'm not going to give it my best effort, don't bother even beginning.

That's one of the things that motivated me to return to college, to complete my Bachelor's degree and continue my studies. Following my injury, I seriously considered giving up my dream of becoming a professional theatre artist. In the early eighties, there just were not very many positive, empowering public images of people with disabilities to be found in our culture at large. After pondering the difficult question of "What'll I do if I don't do theatre?" I came to a rather frightening conclusion. It struck me that I could fail, by virtue of not even making the attempt, OR, I could give it my best shot, and fail,or, I could give it my best shot and succeed! Eventually I accepted a truth about myself - I couldn't live with failing because I didn't even try. That, more than any great driving ambition to be rich and/or famous, is the thought that launched me back into theatrical endeavors.

As I returned to working in the Theatre, as a student and as an aspiring professional in the years following my graduation, I gradually became aware of other individuals with disabilities, and their efforts - sometimes their struggles - to follow their own dreams of artistry. The first time I saw a person in a wheelchair in a television advertisement was a memorable moment for me; I am glad to be able to say that the public image of people with disabilities has definitely changed over the past eighteen years (which is my frame of reference regarding disability related issues). Of course, the struggle is not over yet, but I believe we can say with pride and hope that things have certainly changed.

So often, in the early 80's as I went about on the "audition circuit" seeking theatre companies, plays and roles that were of interest to me, and that might offer me a worthy artistic challenge, I experienced what I perceived as surprise, if not actual disapproval, from directors, producers, and even other actors. Many of these individuals seemed to have difficulty coping with the concept of an actor in a wheelchair. And even if I could get into the theatre building, often I could not get onto the stage – more than once, I auditioned in a lobby, or in the aisle of the auditorium. I confess I had very little sympathy for their apparent confusion as to what exactly "to do with me." Yet, their reactions seemed to solidify my growing determination to be out there making the attempt – to be seen auditioning, even though I was seldom offered actual acting jobs. The ironic thing is, when I did occasionally get offered a role, there was always at least one person involved in the project who remarked on the quality of my work, and not always with surprise expressed in the tone of their voice.

One company in particular had a very strong positive influence on me - Access Theater, which was based in Santa Barbara, California. I became aware of their work producing live theatrical performances involving people with and without disabilities, and I developed and nurtured, for over ten years, a dream of one day having an opportunity to work with Access Theatre. In the mid-80's, I attended a performance of Storm Reading [7], written and performed by Neil Marcus, at a theatre conference in Portland; following the performance, amidst free-flowing tears of gratitude, elation, and sheer joy, I thought to myself, "I want to make theatre like that!'' I was deeply moved, and I was surrounded by others in that audience who were obviously equally moved; clearly, Neil's performance was not simply "about his disability," but something much more than that - his humanness, and our connection to him as fellow creatures.

In January of 1995, my dream came true, when Artistic Director Rod Lathim booked Belle's on Wheels for six performances in Santa Barbara.  It was absolutely one of the most positive and satisfying production experiences I've had to date.  I was treated with respect, dignity, friendship, and taken completely seriously as an artist.  That may not seem like such a big deal, but it was a meaningful experience for me;  the Access team not only did not seem surprised that I performed well, they seemed to have expected nothing else.  And Rod's personal and professional commitment to the artistic integrity of the entire project was evident and unquestionable, which demonstrated to me that there are people and organizations that go well beyond giving lip service to the rights of people with disabilities to participate in the Arts, as consumers, critics, and creators.  The work we did together was in no way compromised by the fact of my disability, and creating a high quality experience for the audience was clearly the goal of all concerned.

Unfortunately, Access Theater has ceased operations – a blow to many of us working in the arena of Arts and Disability! – but their work is chronicled in a beautiful book titled Storms and Illuminations[8], which I’m proud to say includes brief mention of Belle’s on Wheels. Although I was saddened to learn of their closing, I will always treasure my memories of that experience, and I am very grateful to have had the opportunity to work with such dedicated, fine artists. They are some of the people that I endeavor to emulate, as I continue winding my way along the path that is my Life.

At times I do wonder if I have enough direction in my life, or if I am fulfilling my destiny – whatever that may be. Am I "part of the problem, or part of the solution?" At other times, I don’t worry about it in the least. Sometimes, I am content to go along for the ride, enjoying the view and the stops along the way, however long and strange a trip it may be.

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