Waist-High in the World: A Life Among the Nondisabled, by Nancy Mairs (Beacon, 212 pp.; $20, hardcover). Reviewed by Elizabeth Cody Newenhuyse, the author of many books, including Cooked to Perfection: How to Respond When Life Turns Up the Heat, published this month by Zondervan.
My husband's aunt was as close to perfect as you can get, at least by society's standards. Attractive, fit, beautifully dressed, wealthy, and well connected, she was an achiever who quickly rose through the ranks in the telecommunications business. It all could make a person jealous, except that she was genuinely kind and a delight to be with.
She is still attractive, still delightful company. But she isn't perfect anymore. You wouldn't know it to look at her, but for the last several years, Marsha has had multiple sclerosis. She tires easily, lacks sensation in her feet, can't maintain her former CEO pace. But there is something in her very imperfection that seems to have given her life new depth and poignancy.
Nancy Mairs would understand. Mairs, an essayist whose immune system turned traitor in her twenties, is now wheelchair-bound from MS. In this memoir, Mairs, now fiftysomething, writes of what it is like to live with a disability, what the disabled would like the rest of us to understand, what "physical, emotional, moral, and spiritual elements shape the 'differences' founded by disability."
These issues, as she points out, are becoming increasingly urgent in our society (and, I would add, in the church). We are living longer, but at a cost: "Life expectancy has increased more than thirty years since the turn of the century, a span that offers all kinds of new possibilities—among them, alas, the chance that illness or accident will permanently alter physical capabilities. … [We] need a theoretical and imaginative framework for evaluating and managing the repercussions."
Absent a cure for illnesses like MS (or chronic fatigue syndrome or Alzheimer's disease), Aunt Marsha will have a lot of company. The church needs to provide not only ramps and oversized bathroom stalls but also some insight on what it means to live well, what it means to live within limitations, and how we can all, finally, free ourselves from the subtle idolatry of "wellness."
One way to do so is to share our lives and our stories with others, and Mairs does that very well here, writing with energy and humor and honesty. We don't expect the handicapped to be sarcastic, but Mairs is a "cripple" (as she refers to herself) with an attitude. She is also a practicing Roman Catholic who takes her faith seriously. It all makes for an eye-opening and refreshingly unpredictable read.
Many of us look at the obviously disabled and think, I could never … Mairs didn't think so either, but she has adjusted. She invites us to sit with her in her power wheelchair, helping us to see what life looks like from her vantage point (hence the title). Here she describes one morning when there was a "breakdown in the Nancy-care apparatus":
I wake Wednesday morning restlessly, surfacing and drifting and sinking and surfacing again as I wait for [my husband] George to rush in, rouse and raise me, make the bed while I use the toilet, tug on my clothes, and give me a hasty kiss before dashing out of the house.
But George has already left for his teaching job, and Nancy's other helper, her sister Sally, isn't coming until Thursday. What to do?
I am in a pickle. … My bladder is full. I reach for the control to my electric bed, lower my feet, and raise my head as far as it will go. The next part is tricky, since I have to work my legs over the edge and then push my trunk upright. A false move will pitch me onto my back like a beetle or forward into a heap on the floor; in either case, I'll be there for eight hours.
She manages, getting into her chair, into and out of the shower, finding herself something to eat. "And now," she concludes triumphantly,
here I am at the computer, limp but victorious; clean, clothed, and fed . …[Both George and I] understand that, over time, my competence at the slightest tasks will decrease rather than increase. But for this moment we can bask in a brief respite from dread.
Yet, as hard as it may seem for George—himself a survivor (so far) of melanoma surgery—and others to be so needed, and as hard as it is for Mairs to feel so needy, there is this: "I really do believe that actively nurturing your fellow creatures through serving them, in what the Catholic Church designates as corporal works of mercy, develops the whatever-you-call-it: the part of the human psyche that transcends self-interest."
But what of mercy in the public square? Americans love winners, and Christians love triumph-over-tragedy accounts. These attitudes, Mairs says, inform prejudices toward the disabled, and all the federal mandates stored in every database in every bureaucrat's computer in the land can't change them. We're comfortable with our own tribe, "morally righteous, intolerant of ambiguity, fearful of pain and death. We don't like unpleasantness."
The interesting thing here is that Mairs, prickly and contrarian, understands why people may respond in this way: usually, it is because we don't see or know many folks with obvious disabilities. So, she says, "I must routinely roll out among [the nondisabled]. … The more perspective that can be brought to bear on human experience, even from the slant of a wheelchair or a hospital bed, or through the ears of a blind person or the fingers of someone who is deaf, the richer that experience becomes."
This is not a book for the squeamish. Mairs speaks candidly of George's affair with another woman—something not uncommon when one spouse is disabled and sexual issues (which she also explores) become problematic. Many people of faith will take issue with her views on the right-to-die debate: to oversimplify, Mairs believes that there are people who can live quite meaningfully as, say, double amputees, while others (including several not-very-crippled MS sufferers who died at the hands of Jack Kevorkian) hit a "wall" of despair. Mairs is as vigorous defending the double amputee's choice to live as she is defending the MS victim's choice to die.
But in this unpredictability, even inconsistency, lies the great power of Mairs's story: Here is a whole and complex human being, not a poster child. And she is someone worth getting to know.
Duke professor Brett Webb-Mitchell challenges the church to open its doors and hearts to the disabled. Telling the stories of children and adults with various handicaps, he brings a biblical and theological perspective to such questions as Who, really, is the family of God? What happens when a man with Tourette's syndrome wishes to share in the Lord's Supper? What is the place of worship in a publicly funded "home" for the developmentally disabled? How do we mediate between the "nation-state's politics of independence" and the church's "politics of dependence"? Hard questions these, with which all of us need to wrestle.
Copyright © 1997 by the author or Christianity Today International/Christianity Today magazine. For reprint information call 630-260-6200 or e-mail firstname.lastname@example.org.
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