Breath & Shadow

A Journal of Disability Culture and Literature


Dimmer Beacons
By Joanne Maronelli

By 1991 I was twenty-eight, three years past the half-way mark of twenty-five, two years before the big three-0. Not old in terms of a modern life span, but my bloom now hung heavier, my mind more impatient with aspirations yet unrealized, including the hope of a germane transformation, yet another variation on the Pygmalion myth the poet Ovid was kind enough to leave behind for Hollywood. (Think of Leslie Howard and Wendy Hiller in the 1938 film of the same name, adapted from the play by George Bernard Shaw, which in turn led to the 1956 musical, My Fair Lady...) I would root out the loud and bilious working class origins, exchange them for a cosmopolitan hauteur and intellect that was perfectly cool and restrained, thus lifeless, or if not quite that, at least have a shield from the blows no one can contain. From this I wanted to derive a specific plan to make a living, which is why certain ages are impossible, if knowable. When John Updike, on the media circuit to promote his novel, says he can still understand 18 as an age, it is one of his few urbane utterances which resonates back to me, for certain years hold more emotional significance than others.

By twenty-eight women have an eye on navigation. Whether settled into their careers and onto their partners, considering the prospect of children, or coping with those already born, like my sister, who had her first in her mid-twenties, my youth indicated I was a great believer in the ability to adhere to a plotted course. I would graduate with the rank of valedictorian (never happened), support myself by becoming a minor academic celebrity modeled after the late paleontologist Jay Gould, (never happened) and my literary reputation would have an equally stellar rise, parallel to the responsibilities of scholarship. I realize this is an idealized construct. Glorified teachers have their own pressures, like sex with graduate students which leads either to litigation or marriage, but this understanding doesn't quite remove the aftertaste of regret.

Volunteering at a center for independent living center was a far cry from being comfortably ensconced in a humanities department office and living the bauble of a literary life, honing aesthetic judgment to become a connoisseur because you persisted long and hard enough to become one. My sister didn't become one either. Her first child was followed by three more, and these babies interfered with college and career. She tried to major in psychology, accounting, and criminal justice. She worked in banking, sold Avon products, rented booth space in a suburban bazaar, and at last count passed her realtor exam. Her efforts never quite uncoupled her dependence on our parents' largesse, despite her husband, who is neither the picturesque image of the white collar professional, nor the archetype of working class buffoonery as personified by comedians like Jackie Gleason. He runs his own business and is an excellent father, which has raised him slightly in my estimation now that we're all in middle age, what Jane Fonda calls the second act.

As for myself, going back to twenty-eight, I was past the laissez-faire of university, had no money for graduate curriculums, and was vacuous about job commitments. I had previously disengaged from proofreading for an accounting firm, and remained adrift for some twenty four months. It took that long for Liberty to become an accidental discovery of convenience. I was disabled. Liberty was incorporated to provide services to the disabled, so the person and the non-profit were like two schooners passing by, eyeing each other for the commonalities. Our anchors were cast on City Line Avenue, the border between Philadelphia and Bala-Cynwyd. This is where Lisa (not her real name), the Program Manager of Community Education Services, comes in. Along with this abstract job title, her responsibilities to oversee a department were equally vacant to the imagination, based on a quasi-sociological model so prevalent in the public service sector, where the services provided aren't services so much as they are tools to build self-esteem. But the impact and impression she would make on me was not vacant.

On an impulse, I had transferred out of my Power Ranger to your standard black vinyl office chair with chrome frame. I was in a pretty lime-colored pantsuit, a spring pastel knit not appropriate to season, as it must have been mid-winter while I was pivoting from one kind of armchair to another, joking with the two staff women at their desks. What joke I had offered I cannot remember, but know the circumstance which prompted it, since the client I was supposed to work with had not shown up, and I said something funny which made the two women laugh with me. The one I was sitting next to was a three limb amputee who was training me to provide peer support; the other a blind woman who supervised the mentor program, which I was also involved in. When Lisa's crutch tip appeared in the doorway the gesticulated expressions of amusement died off and shifted to an attitude of subordinated reserve.

Because here was the boss exerting herself, pushing herself forward on the idea of using and opposing gravity at the same time, rather than properly balanced and striding with equal weight distribution on the balls of her feet, for that is what spasticity does to those of us born with it. Bipedalism as an extraordinary evolutionary step is relegated to the dust bin. We're continuously fighting muscle contractions which prevent us from achieving normal range of motion associated with proper and healthy motor control. The jack knife of a bent knee or the grip of a clenched fist can be amazingly strong in someone with cerebral palsy, and this is what impressed itself upon me, a restrained strength in this woman, even an elegance in the way she held herself upright on her cuff crutches, the fancy rods of modern technology whose roots can be traced back to forked branches tucked in the crook of the armpit. The definition of her knuckles on the handgrips she held didn't escape my notice. The clench of her fist reminded me of my own. "You're one of the most responsible volunteers we have," she proclaimed. "Would you like a job?"

Caught off guard, I murmured "Yea sure, what kind of job?" Or else an approximation of such an utterance escaped me within the cascade of emotions I was experiencing, gratitude not the least among them, as I would be employed there within a week. This was a signature moment within memory, one of those melodramatic episodes which alters a life path mid-stream, where all my transference of loyalty occurred within that instant of praise and offer. Lisa was not the first disabled woman I had known in my time, but she was the first I had admired, the first to whom my dedication motivated me to use all the powers at my disposal for success. No one could say anything against her as far as I was concerned. This would later cause some painful lessons.


In September 1982 I was rolling along the hallway of Widener University's MacMoreland Center, in search of the room reserved for the poetry workshop session. A little of that freshman trepidation was sitting on my shoulder, its little voice wondering if I'd fit in, since I wasn't successful with peer acceptance in highschool. If I was now in the big leagues of a university, it wasn't quite evident at first glance, at least not in this student activity center, with its yellow hallways offset by molded brown baseboard, matched by doors with screened glass windows, the doors painted the same color of brown, like dark chocolate. It looked like any educational building might, uniform and nondescript with the appropriate amount of semi-gloss. Except this wasn't quite the type of educational building I was used to. No period bells sounded to move the student body from class to class, no lunch room doubled for the study hall and detention penalties. What cafeteria there was functioned more like a private restaurant, or part of it was under a private contract. As my life on campus progressed, this cafeteria would function as a sort of hub for my limited social extensions which reached out into the university fabric. My attachment to my best friend in the neighborhood where I lived came to an end here, while new associations formed and fermented, among them, a gay hanger-on who tried to heal the breach between me and my friend, even though I cannot remember much about the breach, except for snatches of a tongue-lashing.

But this was all too soon for the young woman in that hall to realize, how she would latch onto favorite professors rather than hot fraternity brothers, how important the student-click would be, thus making elitism tantalizing. Not that I mentally articulated this. Elitism isn't very easy to defend in the mainstream. It smacks of class exclusion and rarified atmosphere, but this is what I was striving toward when all I cared about was coming upon room number eleven, and what impression I would make once I entered it. Today I imagine that impression must have been an awkward one, at least from the able-bodied perspective, to see the door open only to bang shut again-not that I can know what was on the minds of these other students, but I know none of them moved while I struggled in my mechanized contraption. I foolishly attempted to get through the doorway on an angle, mainly because of the arc needed to reverse direction in the chair while pulling the door open, at the same time needing just enough arm reach to be able to steer my foot rests around, then through the entrance. Yet I wanted to be a snob.

Once I was in I was flustered, breathing hard from my effort. I lifted my head, my line of vision now even with the informal semi-circle of students opposite me: Nancy, who was something of a limpid blonde, too wispy and pale to radiate a dynamic appeal, Streck, who I later believed was destined to be a curator, Tom, the amateur movie critic determined to become an actor, although I would never know whether he succeeded to his satisfaction or not. To my far left sat a swarthy man dressed in army fatigues and heavy black boots. He garnished chains and wore spectacles over beady black eyes, which in other lights carried a charming twinkle, and he sported a luxurious mane of black hair. "You make a lot of noise." He leered at me, and in that moment, I felt a mixture of fear, gravitation, even fascination. My face felt warm with blushing.

Within a week or two I was head over heels in love. He was a gang-banger, an amateur boxer, an upperclassman in the study of English Literature who dropped acid. I dreamed of giving birth to his children. His name was John, and he was out of my league, radiating that dangerous Italian masculinity which makes stars out of men like Al Pacino. I conveniently forgot that I was a cripple, and that I was competing not only with able-bodied nymphets with which this man surrounded himself, but also with his aesthetic idea of what beauty was in a woman. I turned a deaf ear to the reality of my contorted physical form and bought him an academic text for his birthday. The polite kiss wasn't what I hoped for. I got drunk at his house and clung to the vicarious thrill when he carried me up the stairs to the family bathroom. I threw myself at him, convinced he was lying when he rejected me, simply due to the fact that he toyed with me on a daily basis. He was a consummate flirt. I was obstinate, clinging to hope to the point where it was no longer a pleasure to be in his company, but a bitter torment.


In 1998 the intensity of that longing had transferred itself to the wonder of electronic communication on the Internet. It seemed like magic, it felt like magic, and I suppose I was in search of the magical. Chat rooms, email, posts, and the subsequent communities built up around them made me foolish in my exuberance for the technology. Aside from the overwrought moments which prick a discomforted conscience, and stifling the inherent Catholicism in confessing each of my wrong doings- I was aware how unhealthy it was, the way I had steeped myself into this nascent virtual reality as if it was reality, getting lost in the role playing of a floozy, named Ready, when I wasn't serious; getting burned who knows how many times after telling single men I was a wheelchair user when I was seriously looking, or so I supposed, but my biggest regret in relation to my online adhesion had nothing to with chasing the opposite sex.

Poets & Writers Incorporated caters to creative writing programs within academic institutions. I discovered who and what they were through my academic advisor, way back in the early eighties. He had some magazine issues of the non-profit lying about his office, and I melded their vision to my own from my student days forward, at least until that meld became entwined, and later problematic, when I registered at the Speakeasy message forum.

In retrospect, this marriage of aesthetic sensibility I saw between myself and the publication was something of a red herring. The articles were either exotic and beyond the range of what I could hope to experience, with headlines like WRITERS VISIT IRAQ, (this was after the Gulf War but well before what's going on over there today) or provided a cautionary check on expectations, such as a contributor's deflation of being an American writer working in Europe. None of this helped me satisfy my underlying pecuniary interest in making sales, and this included profile pieces of writers like Dixon, or Acker, who had managed to make a reputation for themselves. These profiles may have offered varying perspectives on the creative writing process, but their cumulative effect, issue after issue, amounted to little more than the conflagration of celebrity gossip.

What I was really subscribing to were the market listings sandwiched between the grants and awards announcements and the back cover. This was all very nice, but given that these markets were literary, mostly low circulation and non-paying, I wasn't getting much of a return for my continuous support of a publication geared toward creative writing students. Not that I am putting all the onus on P&W: I had a certain naiveté about submitting work for the honor of a contributor's copy. For some reason, the number of times you were published would lead to bigger and better things, whereas the reality is closer to the oscillations of an electrocardiogram lead, with its sections of faster and slower activity.

I took my plunge into the Speakeasy after my first year online, and it was the sense of camaraderie which ultimately endeared me to it, but even today, I can't say what I sought through my participation. A literary husband? A sublimating exercise to ease my isolation? There was the attachment to the posting software. Motet was fairly easy to use. You scrolled from top to bottom, learned how to hyperlink using colons. This became a small pleasure, something like code-making or even code-breaking, providing some small insight into the subterranean world of translators and mathematicians who made their living in pursuit of secrets. Not so much of a stretch considering the intertextuality of electronic discussions and the way it's changing information storage. I thought I had made friends through this dial-up surf and turf: a transplanted Mormon lawyer, a Southern novelist, a New England novelist who catered to the young adult market, a San Francisco poet with whom I am still in contact, and whose work invites more of my sympathy, despite my live meeting with the YA novelist in Abington.

After four years of a nearly unfettered license, typing with whatever passion or rationality held me at any given moment, the Speakeasy moderator banned me from having any further accounts at the forum I went into a downward spiral which was made more acute because I was just recovering from Lisa's betrayal two years earlier, a betrayal which destroyed the admiration and belief and the trust which I had tried to place in her. The impact of this had such a profound effect on me that any fidelity I felt toward disability activism and empowerment had long since been called into question, and yet here we were again. A writing community to which I thought I belonged ousted me, despite the in-person contact with the YA novelist. (He was, in point of fact, one of the parties exasperated with me.) Any belief I had in the Poets & Writers platform vanished. It is curious to note that despite this little drama of silencing my voice, the organization continues to solicit me. The message board wasn't meeting my *needs* as a disabled writer, to use their words, but apparently I could still benefit from stashing another 200 issues of the magazine on my over laden bookshelves. Right.

So I dug up John in 2003.

It wasn't all that hard to do using Google. He had achieved for himself what I had only aspired to, having become an adjunct professor who published a text on pedagogy with the lover who won him. After a few exchanges in email, we broke out into a provocative argument reminiscent of our student days, which in some ways felt as good as the old wounds. It pierced raw into a stream of tears. "You're saying help me and telling me to go fuck myself at the same time," he wrote. He didn't sound particularly happy, which quite honestly surprised me. Aren't we supposed to be happy once we've done our personal best, reached for the brass ring, landed the right partner? I know I can never contact him again.

The wounds of unrequited love are one thing. Perhaps the players involved are themselves blameless, but these wounds, once made, are similar to those which shatter iconic idealism. The flesh can take but so many thrusts, the blade can only be driven but so deep before the neat processes of ecology take over. In the natural world carrion isn't wasted, but this rule doesn't generally hold in contemporary human intercourse.

At some point scars harden. The thickened tissue benumbs. I have slowly stopped asking myself what's left, because my truth, as it presents itself to me, is that I am now simply holding the line, scaling back on what I once believed I could achieve despite this disease. I can't. It will be a dose of luck indeed if I turn fifty and am still living on my own.

This hope is my last lantern. Forty plus years is a long time to have gone without successful intimacy or a career that meets my satisfaction.- Although the battle for a career (as it has been a battle),has not been a total defeat, I can hardly claim my victories created financial security and there have been many disappointments., With the lights gone out on what I cherished, one by one, these disappointments will not be appeased, whether I continue to publish for money, vindication, or both.

Joanne M. Marinelli received her B.A. in English from Temple University. From 1992 to 1996 she was employed as an advocate to empower persons with disabilities. In 2000 she served as a disability columnist for HalfthePlanet and AccessLife. Her non-fiction has appeared in Attitude Is Everything, a chapbook, Liberty Works, Small Press Review, New Mobility, The Philadelphia Inquirer, and others.

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