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WRITE YOUR OWN! Read Cal Montgomery's tongue-in-cheek "A Very Grave Matter" in the Nov. 2001 Ragged Edge.



By John B. Kelly

artwork of Katie Lynch
Katie Lynch, 28 inches tall and a wheelchair user all her life, was an inspiration. After her death last fall at the age of 27, her Boston Globe obituary described her as "a tiny woman who inspired thousands when she overcame dramatic physical limitations to run her own version of the Boston Marathon."

Like the runners, Lynch had trained for months for her Marathon feat. Boston television viewers got to see inspirational snippets of her 15-minute walk covering 26.2 feet (the Boston Marathon is 26.2 miles), assisted by a walker and the grasp of someone alongside her in a rolling chair. Addressing the assembled runners before the race, Lynch told them they would finish the race if they believed they could. Drawing on the children's story, "The Little Engine That Could," she led the runners in the chant "I think I can, I think I can, I think I can.".

Lynch's life, the Globe wrote, "was a series of goals accomplished and hearts lifted.".

These kinds of "human interest" or "supercrip" stories, ubiquitous in newspapers and on TV newscasts, have long made disability rights activists uneasy. Like inspirational stories of the past covering the "first black to do this" or "first woman to do that," the vignettes have been criticized by activists for their underlying assumption that we are as a group inferior to normals, thereby making remarkable our smallest achievement. These stories, the critique runs, not only deny group oppression by individualizing disability, but reinforce that oppression by seeming to blame the vast majority of disabled people for not achieving.

The question that no one has asked is: Why are these stories so beloved of editor and audience? Just what do normals get out of the whole inspiration routine?.

To "inspire" literally means to "breathe into" another person -- "to infuse an animating, quickening, or exalting influence into." It is surely true that some form of inspiration is present in all societies, which depend both on a predictable, ordinary way of doing things, and a force which lifts their members out of the everyday into an extraordinary or sacred realm.

Western civilization has traditionally traced inspiration either directly or indirectly back to God (or a romantic notion of the Muse for creative inspiration). But the modern era, with its command that individuals be responsible for themselves, has increasingly drawn inspiration from those who appear to overcome adversity through the power of their own will.

The bad faith of the inspirational story: that which we overcome is what has been done to us in the first place.

Since modern people fear that individualism breeds selfishness, they believe that it takes inspiration to act for something greater than oneself, to serve others, or to accept what is generally seen as unacceptable. Mother Teresa is an example of such an inspiration. So are partners, parents, and siblings of people with disabilities.

In the U.S., John F. Kennedy and Martin Luther King, Jr. are often described as inspirations. Kennedy, it is said, inspired a generation of young people to rise above their selfish interests to "ask what they could do for their country." King, with his soaring rhetoric and unshakable commitment to racial justice, inspired people to work for and believe in his "dream" of a colorblind society. By taking these men as role models, people felt able to mobilize their own willpower for good.

Calls to or demonstrations of self-sacrifice inspire, and yet so does the supposed extraordinary courage of people living with disabilities. The basic template for disability inspiration lionizes a person of lesser ability who, against all odds where others would have quit, mobilizes their will to a superhuman height, perseveres and overcomes their disability, thereby pointing to and proving the existence of the power of the human spirit.

The key phrase that points to selflessness here is "where others would have quit": because our lives are seen as so horrific, people actually believe that the normal expected response to our situation would be a bitter surrender to self-pity. By "refusing" to give up, we become role models of determination and the "power of the human spirit." Our selfless courage benefits everyone by "proving" that we can cope with any situation, that the most important element in anyone is their willpower. Since we all share the potential of the will, this means that we really all do matter, contrary to everyone's beliefs and fears. (In our utilitarian, throwaway society, you can be sure that everyone deep inside is afraid of being tossed on the slag heap.).

Ensuring that everyone matters was Katie Lynch's lifelong goal. "What I learned from Katie is the enormous importance of people paying attention to other people and helping them,'' her mother said. "If you treat someone like a person, that makes all the difference.''.

But here enters a rather large problem of hypocrisy. Normals, in fact, want to feel that they matter more than those labeled abnormal. From infancy, Americans are taught to achieve and defend their normality, first by walking, talking, and becoming toilet trained, and then by mercilessly teasing those who lag behind. We are taught that being normal is right and good, and that everyone wants to be normal. Whereas people inspired by Kennedy and King want to be like them, with disability inspiration it works the other way. Katie Lynch's 26.2-foot walk inspired through its tribute (inescapably "cute" and pathetic from a normal perspective) to the "real" marathoners.

Paraplegic Masha Malikina of Atlanta became an inspirational celebrity last June for wanting to "walk" across the stage to receive her high school diploma. After the school principal denied her request, a local radio station organized a grass-roots campaign that led to her having her own special ceremony, culminating in her moving with full leg braces and a walker to the podium, where, exhilarated, she received a standing ovation from the crowd. Would such accolades have greeted a different scenario, one in which scores of Malikina's friends joined her in wheelchairs at graduation to both show their solidarity with her and revel in the fun of using a wheelchair? No; the tributes must go only one way -- and they are nonstop.

Disability inspiration is a form of propaganda that glosses over oppression while simultaneously reassuring normals about the superiority of their ways.

My argument is not intended to slam Lynch, Malikina or other disabled inspirers, who are after all just trying like everyone else to find a sense of self-worth and achievement in a society stacked against them. But I think we need to investigate disability inspiration as a form of propaganda that glosses over oppression while simultaneously reassuring normals about the superiority of their ways.

We can see this propaganda at work in the story of David Helfgott, an Australian piano prodigy designated mentally ill after a "breakdown." He was institutionalized in psychiatric hospitals, where for a period of ten years he was given psychotropic drugs and electroshock "therapy." Finally freed from the hospital, he began playing piano in a local bar and, with the help of his new wife, is supposed to have made a "recovery.".

Filmmaker Scott Hicks heard about Helfgott and went to see him play. "I was really transported by the whole experience of seeing David and seeing what he could do," Hicks said (in this and the following quotations, I italicize the magic inspirational words). The movie "Shine" resulted, the message of which was summed up by Helfgott himself as "Uplifting and inspirational!" The New York Times wrote that the film was "the story of a real Australian pianist who has triumphed over his painful past, and it is happy to take its inspiration from the real man's amazing recovery . . . in ways that make the phrase triumph of the human spirit unavoidable.".

How Helfgott recovered, from what exactly and to what exactly, was never delineated in any of the paeans to the film or the man. From a normal perspective, he remained strange -- in need of care and guidance, often incoherent. His recovery seems primarily to have consisted of no longer being forcibly institutionalized, drugged, and shocked. Lest the normal audience feel a responsibility for their participation in a culture which does such things to people, the filmmakers purposely glossed over Helfgott's institutionalization. As Helfgott's wife Gillian said, Hicks "covered it without burdening the audience too much.".

After the success of the film, Helfgott went on an international piano tour, where he played to packed houses, standing ovations and critical disdain. One fawning columnist wrote that although Helfgott's illness "still prevents him from effective oral communication . . . when his hands touch the keyboard, a miracle links him to us. . . . Helfgott takes inspired audiences back to the core and displays a "heroic struggle to live." Although Helfgott's playing is "not that technically secure," says Geoffrey Rush (the actor playing Helfgott in the film), Helfgott takes his listeners to a place of "the pure raw impulse of somebody celebrating a primal experience. It didn't matter to concert audiences that his "interpretation of Beethoven's 'Appassionata' sonata was to pound the keyboards and groan," said one story. "They were coming to see a triumph of the human spirit."

What the hell are they talking about?.

It seems that disabled people are so outside the bounds of normality that we come to represent a quasi-divine "meaning of it all," the pure core back to which those stuck in boring old normality want to be transported. To serve adequately as this vehicle of meaning, the disabled inspirer must cooperate by being welcoming, and never ever being bitter. There are no bitter inspirers.

Indeed, in order to inspire, Helfgott must embrace the very norms which first oppressed him. Rather than having his difference banished and controlled in a psychiatric hospital, Helfgott now overcomes his own difference, on behalf of the normals. He overcomes his otherness, he triumphs. They need only clap.

Here we see the contradictory essence of this form of inspiration: Helfgott offers "transport" away from everyday social boundaries toward an imaginary brush with true meaning while simultaneously reinforcing those same boundaries by overcoming his difference for those who made him "other" in the first place.

Helfgott's achievement was summed up by an Internet writer who, while conceding Helfgott's uneven play, wrote "considering that he was kept away from a piano for many important years and (perhaps even more importantly) horribly subjected to electroshock and drugs for years, it was pretty darn impressive." If he had never been tortured earlier in life, he could not be an inspiration now.

All the inspirational talk about Helfgott, of course, brought no critical attention to the thousands of people who continue to face the same coercive measures from which Helfgott "recovered.".

But it can even get worse than this. How often do small books from first-time authors published by small presses get reviewed in The New York Times? It's easier, it seems, if the book contains disability inspiration.

Richard Galli's Rescuing Jeffrey, a father's memoir of his homicidal impulses towards his newly quadriplegic son, was praised by The Times as a tension-filled "drama of thinking." Given the power of life and death over his son, Galli, a personal injury lawyer, "turned to the power of rational thought. 'I want to treat Jeffrey as if he were my client,'" Galli told his wife.

What he did was fashion himself judge and prospective executioner.

Galli's rational thought essentially consists of a pastiche of charged descriptions of Jeffrey's body ("the eyes of a fish on ice," "a cow's tongue," "a head on a neck on a vent in a chair," along with adjectives like "ruined" and "shriveled"), and lists of things Jeffrey would not be able to do ("walk down the wedding aisle," "tangle his legs with those of a lover," "sit back on the couch, legs crossed on the glass-topped table, bowl of popcorn in his lap, watching TV," and so forth).

Into this goulash of "facts" Galli stirred much self-praise, such as his skill at "lifting myself to a higher and more rigorous level of analysis," and his eloquence and rhetorical skill in "persuading" and "neutralizing" opposition to his desire to kill his son just months before his 18th birthday, all the while falsely reassuring Jeffrey that life will be OK.

"For Jeffrey, I wanted the best outcome and believed that to be death. For myself, I wanted to destroy his paralysis, to get it out of my world, to fix it, to conquer it . . . Jeffrey's death would be a victory over his paralysis. I was that selfish. Luckily, I knew it and could try to minimize its impact on the decision I made." Galli revels in his own sadism: "I went to the cafeteria well after midnight not because I was hungry -- in fact I was not hungry -- but because I needed to reconnect with the world of choices and gratification. I could choose a juice or a soda or a coffee milk. This simple exercise of forking some tuna, delivering it to my mouth, and tasting the salt and pepper was -- I hated to think it -- almost blissful. I knew Jeffrey would never be able to do that. Yet it made the bite of tuna taste so much the better." This book is so awful that it really has to be read to be believed.

And the reason Galli wanted to kill his son? It's because Jeffrey would not be able to live with the knowledge that he caused his own accident, Galli declares in a case of massive and obvious projection. In his grand "closing argument" to the hospital ethics committee, Galli proclaims that Jeffrey "will always believe that he did it to himself. . . . For all the rest of his life, Jeffrey will believe that he is the cause of his own paralysis. There is nothing anyone can say that will convince him otherwise. He will always believe that, and he will always be tormented by it.".

It seems, in other words, that Galli was furious at his son, wanted to kill him, and then when that didn't turn out (Galli observed his son having fun and laughing and decided to let him live), he decided to kill him in print by writing this book.

Except for one Amazon.com customer, the father of a paralyzed teenager who found Galli's argument "self-centered and incomprehensible," every other reviewer has seemed awestruck by the book. The Providence Journal scrounged up the usual buzzwords to anoint it "one of those rare great books that captures the strength of the human spirit and trumpets the quiet dignity of true heroism," and that "goes beyond even Tuesdays With Morrie to the emotional core of our very existence.".

Various other reviewers fell over themselves touting its inspirational invocation of the human spirit. As one reader summed up, Galli's "remarkable and candid account of the decisions and thoughts he as a loving father had to go through during a horrible time are truly touching and poignant. This is an inspiring book that touches upon many of the most important and beautiful aspects of the human spirit.".

Rescuing Jeffrey is clearly an extreme example of what people consider inspiring regarding disability, but I think that the horror and rage that it so inadvertently captures lie below much of the media-driven pabulum dished out on a daily basis. Without that horror and its tag-along aggression, disability inspiration simply could not exist.

If Katie Lynch had been, as she so fervently desired, accepted as just another human being, with all the differences and similarities that might entail, her walk would have likely never occurred (or the media would have paid little attention to it). Masha Malikina's desire to walk across that stage would have been no big deal -- or perhaps members of her high school's "Able/Disabled Alliance" (that will be the day!) would indeed join her in wheelchairs.

As for Helfgott, if most of his adoring concertgoers saw him, or someone like him, on the street chattering, they would likely move on in disgust. Yet by pounding the keyboard, he finesses the horror of the ablebodied for them, and makes them feel better. This is the bad faith of the inspirational story: that which we overcome is what has been done to us in the first place.

John B. Kelly is a Boston-based disability activist working on a Ph.D. in Sociology at Brandeis University. His other stories for Ragged Edge have included Michael Moore and Me and Incontinence.

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