I want to thank Becky O’Malley for her heartfelt, intelligent, respectful appreciation of Dona Spring (see front page). I met Dona soon after moving to California 14 years ago. We had a warm collegial relationship; I greatly admired her work, and I think she had high regard for mine. The various causes to which she committed her time and energy were and are passionate commitments for me as well, including peace and social justice, disability rights, animal rights, and defense of the oak grove and the protesters perched in its branches.
But I want to focus here on an issue to which O’Malley’s remembrance gracefully refers, an issue which seems to me to come into sharper focus as we think about and honor Dona’s life. Yes, she was a great role model, especially for those of us in the disability community who continue to struggle for our rights. O’Malley writes: “People who lack Dona’s experience (that’s most of us, after all, thank goodness) are prone to make knowing comments about the importance of ‘quality of life’ for physically challenged people. What such comments often miss is that your quality of life can and should be whatever you make of it.” I recall an editorial by O’Malley, in the wake of Terri Schiavo’s horrific death in March 2005, in which O’Malley, virtually alone among progressive commentators, took the brave position obliquely reiterated here. “There’s a clear implication,” O’Malley wrote then, “in some of these discussions [of proposed “death with dignity” bills] that the life of a disabled person is somehow lacking in dignity, no matter how much bill sponsors choose to deny it.”
Yes, one’s quality of life is what one makes of it. It seems so simple, so obvious, doesn’t it? No one else—not judges, not lawyers, not family members, not doctors, not legislators, and not the non-disabled public at large—has a right to pronounce judgment as to the “quality” of our lives. In casting the issue as a “self-determination” or “freedom of choice” (or worse, as a “right to die”—what a revealing locution!) issue, the progressive community as a whole completely ignores the uneven playing field inherent in our disability-phobic culture—the fact that our lives are NOT valued, that we are viewed by those who, as O’Malley tactfully put it, lack Dona’s experience, as objects of pity rather than as equal players. They also conveniently ignore the profit motive which drives health care in this country. Put bluntly, our medical care costs more, and our lives are worth less.
O’Malley pointed out, in her 2005 editorial, that there is an impulse, on the part of the so-called death with dignity movement, “to applaud the human tendency to say ‘I don’t want to be a burden,’ though it often arises from...low self-esteem.” What might lead a person with a disability living in 21st-century America to say to a doctor/judge/family member, Please end my life, I don’t want to be a burden? Those who “lack Dona’s experience” fail to frame this question, rushing to embrace disabled people’s “right to die”—and make no mistake, those who request assistance in committing suicide are overwhelmingly people with disabilities—without examining the factors that contribute to such despair.
Let’s envision an imaginary suicidal disabled man, and compile a checklist. If his disability is the result of injury, did he receive adequate rehabilitation following the trauma? What are the conditions of his daily life? Is he treated respectfully by the people who most impact, and hold power over, his life, and by the public in general? Is his home, and the built environment he traverses (including public transportation), accessible? Does he receive appropriate and timely medical treatment, including palliative care for pain? Does he receive the daily assistance he requires, whatever form that might take—help with eating, dressing, bathing and personal hygiene, perhaps sign language interpreters, Braille, navigational assistance, etc? Is he employed, and if so, how is he treated by his boss and coworkers, and if not, why not? Why is the unemployment rate among people with disabilities so appallingly high? (67 percent, according to the U.S. Census Bureau.) When he sank into depression and expressed the wish to end his life, did he receive counseling, or was it simply assumed that anyone with his level of disability would naturally want to die? Does he have access to any disabled role models who might juxtapose, against the soul-crushing stigma associated with disability, images of disabled people (like Dona) living strong, vital, creative lives?
Some say we gimps here in the East Bay live in a bubble, compared with gimps elsewhere in the country. Perhaps the relative, perceived ease of our lives makes it harder for non-disabled folk here to connect the dots and consider the issue on a global, social-justice level. Certainly the trappings of our built environment (curb cuts, public buildings, buses and trains, etc.) are more accessible here than elsewhere in the United States, thus enabling us to be more visible, which gives us the semblance of equality. No snow banks to surmount in winter. A statewide in-home attendant program which allows the more fortunate among us disabled Californians to remain in our homes and communities and not be abandoned in nursing homes against our will when we need a little help with daily living.
Yes, we’re a lucky lot, we Bay Area gimps. But oops, I forgot about the residents of Laguna Honda, world’s largest, industrial-strength nursing home, in San Francisco. Shall we ask those 1,200 trapped souls if they feel lucky? And oops, I forgot about Bob, my deaf friend whose recent attempts to renew his driver’s license brought him face-to-face with a DMV that seemed utterly oblivious of its obligation to accommodate his communicational needs, causing him multiple trips to the office, many long hours of waiting, and months of anguished worry. And oops, hmmm. I forgot about Dona! “When she was no longer able to maneuver around Berkeley’s notoriously inaccessible City Council chamber, she telecommuted, participating in council meetings by speakerphone from her home after a legal battle over her right to do so.”
O’Malley rightly extols Dona’s bravery, her tenacity, her intelligence, her intuitive grasp of issues, her uncomplaining (about her physical deterioration and chronic pain) nature. But what if, for the sake of argument, she had occasionally (or frequently), justifiably, complained, annoying others around her and rendering them less than sympathetic? Or what if she’d been blessed with a lesser intellect, or less determination? What if, confronted with the inaccessibility of City Council chambers, and the legal battle over her right to participate in council meetings by speakerphone, she’d felt overwhelmed by the injustice of it all? And what if, acting out of that deadly (and all too familiar to us disabled folk) sense of overwhelm, she had decided to throw in the towel? What if she’d requested assistance in dying? Faced with the decision whether or not to extinguish her life, would a doctor/judge have identified the locus of her despair as the injustice of her disability (thus an irremediable stroke of fate), or as the injustice of the City Council’s refusal to accommodate her disability (an entirely remediable problem)?
In its zeal to defend “the principle of personal autonomy,” “right to die” adherents decline to examine such environmental and social justice factors. They wax grandiloquent regarding “our Anglo-American legal tradition of personal autonomy in the right to self-determination,” harkening back to 19th-century philosopher John Stuart Mill’s widely quoted: “over himself, over his own body and mind, the individual is sovereign.” In reviewing the case of one California quadriplegic’s wish for suicide assistance, the California Supreme Court upheld his request, invoking this very passage by Mill. “Each man [sic],” they intoned, “is considered to be master of his own body...Our society has a long-standing tradition of recognizing the unique worth of the individual.”
One cannot help but be struck by the hypocrisy of these words. Were our sovereignty over our own bodies and minds, our unique worth as individuals, as rigorously supported in our pursuit of full equality as it has been upheld in our pursuit of death, many of our sisters and brothers who have tragically been “helped” to die would probably still be with us.
Dona was my sister in struggle. Like hers, my disability—though less apparent than hers—involves chronic pain and significantly limits my daily activity. Like Dona, I require assistance with various activities. (For example, I’m using speech recognition software to type these words.) Like her, I’m frequently unable to sit up in my scooter. And like Dona, I defy the privileged, non-disabled, white “right to die” movement (a movement from which poor people of color are conspicuously absent, perhaps because they’re too busy defending their right to live) to argue that my life somehow has less dignity than theirs. As anyone who knew her can attest, Dona glowed with dignity.
In 1997, when the Supreme Court took up the issue of physician-assisted suicide, I joined a hardy band of my disabled comrades in front of the court’s stately headquarters in Washington D.C. Dona would have approved my scrawled sign: HANDS OFF MY PLUG!
You’re right, Becky: Dona loved her life, and lived every inch of it with singular clarity, focus and zeal. Thank you for recognizing her worth, her inherent dignity. And thank you, Dona, for your passionate commitment to justice. Bless you. May the rest of us, shouldering your legacy, follow in your tire tracks.
Jean Stewart is an El Sobrante writer, activist for disability rights and for peace and social justice activist, and author of The Body’s Memory.