nursing homes

Always willing to challenge the disability rights movement with provocative ideas, my friend Josie Byzek has now written a column calling on our advocacy movement to make employment a top priority. It hasn’t been, says Josie, and “this has got to change.” She questions the wisdom of expending so much of the movement’s energy and resources on the nursing home issue. She argues that we should shift attention to employment advocacy, so that improved job opportunities will help keep people from getting so poor that they end up institutionalized.

I have a couple of quibbles with Josie’s column. (I don’t think she’ll mind me airing my critique. I know Josie well to know that she enjoys a healthy, respectful debate.)

First of all, Josie’s article attributes the lack of focus on employment, in part, to “a community organizing model that erroneously teaches change can only come from the very bottom up.” She goes on to make this questionable claim: “I can’t think of a single successful social change movement that was initiated and propagated primarily by the poorest of the poor, the most oppressed of the oppressed. Social change, in actuality, typically begins in the middle class.”

When I read this statement, Cesar Chavez and the farmworkers movement leapt immediately to mind: Poor, disenfranchised, marginalized by class, race, and language, these laborers organized a massive and ultimately successful grape boycott to protest their exploitation by the agricultural industry.

Then I thought of those drag queens rioting at the Stonewall Inn, fighting back against police harassment and other forms of discrimination. These unsung heroes in high heels, mostly low-income people of color, sparked the modern lesbian/gay/bisexual/transgender (LGBT) movement. (If anything, that movement’s takeover by the middle class has threatened to derail it. Instead of demanding real justice, and the right to be ourselves in any environment, the LGBT movement’s loudest current demands are to be allowed to assimilate into two of our society’s most oppressive institutions: marriage and the military.)

So I disagree that a grassroots, bottom-up advocacy model is wrong for the disability rights community. Having said that, I agree with Josie about the importance of job opportunities. Our community should be outraged by the fact that only around 37 percent of disabled Americans are employed. Like Josie, I would like to see a more aggressive “push for policies that truly can shift that unemployment rate.”

This is more than a civil rights issue, it’s a human rights issue. The International Convention on the Rights of Persons with Disabilities — which took effect in 2008, and which has been ratified by 78 countries (though not yet by the United States) — recognizes “the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities. (Article 27).” It goes on to call for nondiscrimination, reasonable accommodation, affirmative action, training and placement services, self-employment opportunities, and more.

And just as important, I think, is Article 28 of the Convention, which recognizes “the right of persons with disabilities to an adequate standard of living for themselves and their families, including adequate food, clothing and housing, and to the continuous improvement of living conditions…”

Our disability advocacy movement needs to prioritize economic issues, including but not limited to employment. Certainly, everyone should have access to opportunities to use their skills and talents for financial reward, for this increases our choices in life, and improves our own and our families’ well-being. Most disabled people are denied those opportunities. In the U.S., disabled people’s lives tend to enrich other people, while leaving us relatively poor. Many of us aren’t allowed to earn a living; if we do, we can lose the very supports that keep us alive and out of nursing homes. There are a few loopholes, called work incentive programs, but these are quite complex, and people who use them frequently face bureaucrats’ suspicion and mistreatment.

Furthermore, workplaces can be very unfriendly to people with significant disabilities. I’m not just talking about blatant prejudice. I’m talking about corporate structures that barely tolerate any human needs or differences on the part of workers. Schedules and duties can be rigid, office politics can be baffling, and organizational cultures can be downright brutal. Even non-disabled workers have difficulty with these aspects of many job environments; for workers with chronic physical conditions, or mental health issues, they can become insurmountable barriers. Yet the rehabilitation industry, and even employment advocates, focus mostly on getting disabled people “ready for the job market.” I think we need to advocate for fundamental changes in the U.S. workplace, beyond just a reasonable accommodation to an individual’s disability. We need to reconfigure corporate America, to make it serve workers and consumers — indeed, to make it serve the public good — rather than to funnel resources upward into an ever-growing concentration of wealth.

And while I agree with Josie that we “ought to be delinking disability from poverty,” I also think we ought to be delinking poverty from suffering. No human being should endure deprivation of basic material needs such as housing, food, and clean water. In the spirit of Article 28, we must advocate for “an adequate standard of living… and… continuous improvement of living conditions.”

Which brings us back to the nursing home issue. We should demand job opportunities, for anyone with a disability who can and wants to work. But as long as so many of us live with the fear of losing our right to live in the community, we must focus on freedom instead.