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No Mercy
On July 5 the Tribune published a powerful essay about a mother driven to the ultimate act of love. For years 63-year-old Carol Carr had cared for her two sons while Huntington's disease -- which had already killed this Georgia woman's husband -- relentlessly destroyed them. But in June the suffering ended. She shot them in their beds. "She took things into her own hands," Lewis Whittington of Philadelphia explained in his op-ed piece, "because she undoubtedly saw that there was essentially no medical or legal rescue in place for her sons. They are just expected to exist in a hellish circumstance, and those who love them are expected to watch it." Whittington's words were compelling because he'd been there. "For years I saw my sister, Barbara, deteriorate in a similar fate and our family stood by helpless, watching her suffer the worst tortures and human indignities that one could possibly imagine. . . . It is a sanctimonious arrogance that anyone would want to see someone struggle physically and mentally, minute to minute, in conditions that steal a person's will to control their own body. "People who don't deal directly with disabilities and catastrophic illness often have easy answers and platitudes about the sanctity of life that spew from their own value system. Their opinions are little comfort to those who live with these problems." It's a measure of where we stand as a society that a statement such as this -- contradicting old-fashioned absolutes -- could be published today in a major newspaper. But as the nation grays we've all been haunted, in our imaginations if not yet our lives, by the specter of our loved ones' unassuageable suffering. We've made it our business to comprehend that there can be worse things than death. It might even be said that Whittington was preaching to the choir. Steve Drake is familiar with the empathy the media offer ordinary people such as Carol Carr in extreme situations. He read the op-ed piece, which the Tribune called "Life, be not too proud; A caregiver's final act of motherly love," with special care. "Weird," he later told me. "The title talked about a mother's final act of love. Yet the op-ed went on and talked about what a burden it is to take care of a person with disabilities -- not how much you love them, but how much they mess up your lives." Drake is disabled himself. He was born hydrocephalic. "I have fairly mild neurological disabilities," he says. "I was head injured at birth, and the doctor tried to talk my parents into leaving me in the corner of the nursery to die. The word he used is, I'd be a 'vegetable.'" And so Drake's strongest sympathies are claimed by the miserable whose misery we want to put them out of. "We've had a tendency on the part of journalists to identify more with the perpetrators than the victims, because the perpetrators are more like them than the victims are." He's observed a growing sentiment that "people who kill out of love should be treated differently" and a campaign "for a new classification of murder called compassionate homicide. You can only qualify for that classification depending on the characteristics of the victim. In other words, you can only go for compassionate homicide if the victim is old, ill, or disabled." Of the several national organizations devoted to the concerns of Americans with disabilities, one of the most self-interested is Not Dead Yet, which describes itself as "a grassroots disability rights group formed to oppose the movement to legalize assisted suicide and euthanasia." It was founded by Diane Coleman, director of the Progress Center for Independent Living in Forest Park, which is where Not Dead Yet is based. Drake, a research analyst, is its only paid staffer -- he has a desk in a storage room. He met Coleman -- who was disabled by spinal muscular atrophy -- at a 1996 protest staged in Dr. Jack Kevorkian's backyard in West Bloomfield, Michigan. It was Not Dead Yet's first action, and Drake came all the way from Syracuse. In this organization's eyes, the dispensation we seem willing to grant ourselves to kill the old, ill, and disabled is a measure of how much we'd rather shun them than care for them. Last New Year's Eve a 76-year-old Oak Lawn man, Thomas Harrison, went to the bedside of his wife, Shirley, 74, shot her three times in the chest, then turned the gun on himself. His wife died, and he survived. The Daily Southtown story, headlined "Neighbors: Man wanted to end wife's suffering," reported that Shirley Harrison had been ailing for years from stomach and colon conditions and had been hospitalized at Oak Lawn's Advocate Christ Medical Center since having a stroke. The headline the paper composed for its second story quoted the couple's pastor: "It was very difficult for him to watch her suffer." The pastor regretted not reaching out to the Harrisons, but privacy laws had prevented the hospital from letting him know a member of his parish had been admitted. There was a shift in the tone of subsequent Southtown articles, which brought out that Shirley Harrison had been in a regular hospital room rather than intensive care, that doctors had told her husband her condition would improve, and that so far as anyone knew she hadn't said she wanted to die, though according to police, her husband had told others he wanted to kill her. Her husband was charged with first-degree murder. Drake discussed the Harrison case at length at www.raggededgemagazine.com, an E-zine devoted to disability rights. "Press coverage . . . clearly required a response," he wrote. "We needed to redefine the case and the circumstances of Shirley Harrison's death. In order to do that, we needed to identify portions of the press coverage that could be held up to easily-understood criticism. The first item we identified was the consistent and persistent labeling of Shirley Harrison's murder as a 'mercy killing,' carried out in response to her 'suffering.' And virtually everyone -- neighbors and pastors alike -- talked about this as a tragedy for Thomas Harrison. No one was saying that the real tragedy was Shirley's murder." Drake pointed out to me a telling passage from the first Southtown article: "Oak Lawn police released few details of the investigation. They would not say whether Harrison shot his wife out of mercy for her suffering." Then he showed me an AP story from Texas, where a former nurse had recently been charged with killing four patients using lethal injections and was suspected in 16 other deaths. The district attorney "would not discuss a possible motive or say whether the nurse might have considered the deaths 'mercy killings.' Most of the victims were elderly." The leading questions of reporters tell Drake what angle they're working on. Could the nurse have been acting out of mercy? one of them asked the DA. "This was in the context of a serial killer! It's like, what the hell's going on there?" To the members of Not Dead Yet, the essay by Lewis Whittington in the Tribune was a perfect example of the press -- certain of its own enlightenment -- getting it wrong: romanticizing homicide instead of holding society accountable for its indifference to families like the Carrs. Not Dead Yet decided to take its protest to a new level. "We made a bunch of phone calls over the weekend," Drake told me, "and got nine people together to go to the Tribune on Monday." Another group at Access Living of Metropolitan Chicago was waiting to be summoned if needed. Seven of the nine protesters who met in the Tribune's lobby were in wheelchairs. Coleman began calling upstairs and landing in editorial-board members' voice mail. Finally Coleman got through to Dalia Garza, the board's editorial assistant, who told her the board was tied up in its morning meeting. "At that point," Drake would write in a post to an E-mail list for disability rights advocates, "we started discussing options quietly. Some people at Access Living had offered to be on standby if we needed reinforcements, so we discussed calling them. We also discussed the possibility of taking the elevators and getting arrested if that was what it took to get ourselves heard." It didn't take that. When the editorial board meeting broke up, Garza told Bruce Dold, editor of the editorial page, that the group wanted to come up. Instead, Dold went down. Drake would write that Dold told the Not Dead Yet group "he understood our concerns since he had a family member with severe disabilities. At that point, we pointed out that would suggest he probably identified more with Whittington . . . than he did with the people with disabilities Whittington was writing about. He took offense at that." It was Drake who made the point that offended Dold. Though Dold considered Drake unnecessarily confrontational, he wasn't too annoyed to work something out. He says, "I told them a very personal reaction piece to the original op-ed could be very effective, and it was." One of the nine protesters was Mike Ervin, a professional writer with muscular dystrophy who'd noted that the existence Whittington judged too "hellish" to endure was an awful lot like his own. Published July 21, Ervin's response wondered: "My mother loves me dearly as I love her. She would do anything for me. But she's in her seventies and she just can't do everything I need. So do I deserve a bullet in the brain? The hell Whittington described is a hell of our own creation."
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