By Mike Smith
For the past month I’ve had a front row seat watching one of the most miserable jobs in existence: hot tar roofing. I feel nothing but gratitude that someone else is making a good wage putting a roof on my apartment building.
My voyeur’s apprenticeship has taught me everything I know about being a hot tar roofer: miserable hours, hurrying, lifting, climbing, inhaling noxious dust and tar fumes, getting burned by the sun and put out of work by the rain–hey, this is Seattle. I’ve listened to the boss abusing his crew in language that’s supposed to motivate them, and watched workers on cigarette breaks suppressing urges to rip his head off.
My disability–cerebral palsy–makes it impossible for me to roof a building, but it does make me eligible for SSI and public housing. Being free from this sort of work–free of having to work to survive–is a privilege. Randall Standish also appreciates being free from work–especially hot tar roofing. At 18 he fell from a building on a job site, breaking his neck at the C5-6 level. “Today,” he says, smiling, “I’m just goofing off.”
“Goofing off” means doing a little work on the side, furthering his education and being involved in community service. After 12 years with the Junior Chamber of Commerce, serving as president several times, he now occupies a senior advisory position. He’s served on numerous committees, volunteered at the art museum, and joined the Mountaineers Club–combining public service with recreation–to start a committee that will produce a guide to accessible trails in the area. And that’s saying nothing of the kayaking, snow skiing, water skiing and skydiving. Next on his list? Going back to school and horseback riding.
Since the day his career as a laborer ended, he’s explored all kinds of options, from not working to full-time employment to his present “something in between”–an eclectic and creative combination of activities usually done at home: “the secret vocation.”
Full-Time Work Not an Option
June Price, editor of Living SMArt, the spinal muscular atrophy newsletter, enjoys her own secret vocation. Since the mid-1960s she’s started and run a statewide service organization, volunteered and advocated for dozens of nonprofits, edited newsletters, and more. “I ran the service organization, did staff recruiting, and organized fundraisers for seven years until I dropped from exhaustion … all volunteer, from my humble apartment.”
This certainly can’t be called “not working.” For Price, not working isn’t even an option. “I have no choice. … My spirit demands it. I simply cannot just sit back and take when I know I have the skills to give. It’s as simple as that. It’s an innate need. I cannot live without a pet in my life. I cannot stay inside on a summer day. I cannot get through the day without music. I cannot not work. It’s not a question of choice.”
In addition to unpaid advocacy and self-care, the secret vocation frequently includes other types of volunteer work, part-time paid work, caring for family and friends, community and other civic activities, and usually disability assistance to pay for health care, home care, rent, and general survival. A person’s focus might change to meet shifting interests, resources, needs, and demands.
Those in the secret vocation have usually given up on full-time employment or feel that it’s given up on them. They’ve found that it doesn’t pay. Selling all or most of their productive hours for money will cost them in the long run. Health issues, lower stamina, institutional work disincentives, and other employment barriers make the decision an automatic choice.
Price speaks for most when she says, “Pure and simply, I can’t afford to be ‘gainfully employed’ as I will lose all the government benefits that sustain me–rent assistance, medical insurance, PCA funding, etc. I realized long ago that I had to stay virtually unemployed all my life.”
The Invisible Population
Only about 22 percent of people with disabilities are employed. It’s folly to assume that all–or even most–of the remaining 78 percent are doing nothing. But like homemaking, the secret vocation has been discounted, made invisible, no doubt because our culture at large equates value with price and a person’s worth with earnings. The more money you earn, the more valuable you’re considered to be; conversely, not earning money can lead to a negative evaluation.
Another reason the secret vocation is not appreciated is that efforts to increase full-time employment have been given all the attention. From the President’s Committee on Employment of People with Disabilities to governor’s committees in the various states to the Rehabilitation Act, society has sanctioned full-time employment as the only fully legitimate goal for people with disabilities. The promise of “worthwhile” employment has been the single most persuasive justification for advancing the civil rights, physical access, and participation of disabled people in society. As well it should be–full-time employment is still the surest way an American can support a family and have the lifestyle that most of us want. But is it the best way to assign human value?
Because of all the attention on employment, prospects for people with disabilities–we are told–have improved. Take Bill Ferris, for example. From a T5 injury at 17 to associate director of the University of Washington budget office, he’s been a model client for vocational rehabilitation. SSI and Voc Rehab helped him get two degrees that led to a career in advertising photography in New York City. But, he says, “I burned out on the advertising business and hectic lifestyle” and then moved to Seattle. There he used his business skills to land a job at the UW and start another career. Today he’s on track to “partially retire” before he’s 60.
According to the latest Disability Watch, an annual report published by Disability Rights Advocates, in the last seven years “there has been a significant improvement in employment prospects” and the earnings gap between disabled and nondisabled workers has at least stopped widening for people with disabilities in the full-time job market.
Unfortunately, however, this improvement has not been visible across the board. While job prospects have improved for some, the overall employment rate for people with disabilities has declined slightly, from 24 percent in 1994 to 22 percent in 1999. What’s more, “The proportion [of the disabled population] reporting inability to work was 63 percent in 1999, substantially higher than the 55 percent rate in 1994.” According to Disability Watch, “One possible explanation for the increase is simply that, for unknown reasons, the severity of work limitations has worsened over the years among the population identified as having work disabilities.”
Have we somehow become more disabled in the past seven years?
Of course not– “It’s the economy, stupid.” The economy and the nature of work have changed in the years since we first heard that campaign slogan. Robert Reich, political economist and former secretary of the Department of Labor in the Clinton administration, explains how people doing well, like Bill Ferris, are better off and those who aren’t are doing worse. In his new book, The Future of Success, he writes, “The emerging economy is offering unprecedented opportunities … for people with the right talents and skills. Because the demand for such people is growing faster than the supply, their earnings are pushed upward. Yet the same competition is pushing downward the pay of people doing [work that pays less]. As a result, disparities in earnings are growing steadily larger.”
Since real earnings have been dropping for lower-paying jobs–the jobs that many people with disabilities are likely to get–it should come as no surprise that some are increasingly reaching a point at which it no longer pays to work. Even in a booming economy, we’ve been dropping out of the job market.
“Disability is expensive,” says Jeff Shannon, a quad. Recently laid off from Amazon.com, he’s opted out of the 9-to-5, but not voluntarily. Fiercely committed to regaining a full-time income, Shannon is recalculating costs and benefits. He’s decided the cost of commuting, in time and money, is so high that jobs he can do at home are pretty much the only ones worth considering.
Sense of Purpose All-Important
While Shannon still has the choice of returning to full-time employment, it appears that increasing numbers of people with disabilities do not. We can deny it, try to change it, even rage against it, but until the facts change, we would do well to look to the masters of alternative vocation–people like Standish and Price, who prove that an employer is not necessary for creating a busy and worthwhile career. And we should pay particular attention to those whose sense of purpose is so strong that it sometimes appears to be a mission.
Katrinka Gentile, for instance: Between phone calls, e-mail, and meetings, she puts in seven to nine hours a day working on disability advocacy. “I feel like I have a responsibility to my brothers and sisters,” she explains. The bulk of her work right now revolves around home care issues. In addition to leading Washington State ADAPT, she chairs the committee writing the State Plan on Independent Living and is co-sponsoring a bill to unionize independent home care workers. She says, “I live to work … and play. It’s the kind of work I do that makes me want to work.”
And then there are spiritual souls–people like Carl Hay–who help us see that whatever our course, our purpose should be to make the best life we can. Over the years he’s raised a daughter as a single parent, started and run a school for seven years, invented a variety of mobility devices, and built his own airplane. Now his days are filled with working on the house and in his garden, inventing and tinkering, flying and working on his plane, reading, and mentoring disadvantaged young men.
“Balance is most important in life,” says Hay. That means making sacrifices and time for family, friends, play, civic work, and whatever work you can do for yourself. “It’s especially important for disabled people to figure out what our gifts are,” he says, “because the world won’t come knocking at our door.”
Mike Smith lives in Seattle, where he pursues his secret vocation with gusto.