by Laura Hershey

Frontline disability support workers, particularly in-home attendants funded by Medicaid and similar public programs, for the most part get a raw deal in terms of wages, benefits, and opportunities to organize. Ironically, considering the high demand for such workers, there are still few material rewards to attract them to the field.

Perhaps that will change, driven by demographic factors. More Americans are getting older and needing assistance with daily living activities. Openings for home health aides and personal care attendants are expected to increase rapidly over the next couple of decades. That demand for labor should be leveraged into demands for labor rights. Those of us who need the services should join forces with the workers, and find ways to create more just systems of service and employment. Whether someone does attendant work as a career, or as a transitional job between careers, or to support themselves during college or grad school, he or she should be able to expect some basic employment benefits and rights, such as a living wage, cost-of-living increases, merit raises, health care coverage, paid sick and vacation days, relevant educational and training opportunities, the right to organize politically to advocate for their rights (such as by forming a union), and community respect for their work.

Until the day our workers do enjoy these rights and benefits, people with disabilities who employ and/or supervise them can, and should, do what we can to create the fairest possible working conditions now. We can begin enacting justice in an unjust world.

How do we do that?

We can start by acknowledging the profound disconnect between the importance of the work and the compensation it offers. In understanding and analyzing this, we can call upon a radical understanding of how disability justice and worker justice intersect. Providing hands-on personal care has acquired over the years an aura of sentimentality. People are assumed to do such work out of pure compassion (which translates as pity), or because "it's so rewarding" (rewarding in a vague, emotional, non-material sense). Within this framework, disabled people embody neediness, while support workers cheerfully fulfill our needs. Disabled people are passive objects of support workers' active "caregiving."

This construction of attendant work has a wide and deep hold on the consciousness of the public, and of many workers and clients. I can't count the number of job applicants who have told me that they wanted to be my attendants because they "love to help others." This response always troubles me because it would seem to premise my critical support services on a unilateral feeling, rather than on a mutually beneficial arrangement and mutually understood expectations. And I know people with disabilities who also participate in this drama of altruistic caregiver tending needy patient. Perhaps they do so because they hope for a guarantee that their needs can be met through emotional manipulation, in the absence of a stable workforce.

Don't get me wrong. I do not discount the reality of a feeling component in the interactions between disabled people and their support workers. Ideally, these include feelings of respect, and the kind of affection that grows among people who work together cooperatively and productively. I enjoy conversations with many of my attendants, and I care about their well-being. But to base the entire arrangement on emotional "rewards" is misleading and dangerous, because it ignores the need for economic justice for workers, who can't pay their rent with gratitude. And gratitude itself can be destructive, if too excessively wanted or given, because it creates a power imbalance. If personal assistance is a favor, then a provider can give it or withhold it according to whim; and giving it earns no particular claim of recompense. These traditional, still prevalent notions of "caregiving" deny justice to both disabled people and support workers.

Based on this radical understanding and commitment to justice, we can actively counteract the oppressive model of personal assistance as an act of kindness rendered to the less fortunate. We can replace that model with a more just model, in which workers with a particular skill set and interest – perhaps an interest in "helping" to maximize independence and efficacy for people with disabilities, or perhaps just an interest in doing practical and useful work – provide a necessary and valuable service, and the recipients of that service provide valuable rewards in return. In this framework, the role of the recipient and the role of the worker are distinct, well-defined, equally valued, equally empowered, and non-oppressive.

I urge all of us – disabled people and the home care workers who work for us – to advocate systemically for our own and each other' overlapping interests. Join advisory committees for state Medicaid home and community based services programs. Serve on boards of directors of nonprofit agencies providing home care services. Help develop, expand, and strengthen consumer-directed attendant programs. Get involved in budgeting and rate-setting discussions in state legislatures. Campaign for progressive ballot issues and candidates. Organize rallies demanding improvements in home care services and working conditions.

As we work to bring about systemic change, we can also implement a vision of justice, day to day. Rather than focusing on the relative political powerlessness of people with disabilities, I choose to discuss how we can proactively position ourselves as active agents, making decisions and taking actions that improve working conditions for our attendants, in large and small ways.

Below are some ways I try to create a positive employment environment for my own attendants. I offer these strategies to other justice-minded disabled home care users.

Respect attendants' professional abilities, and utilize them appropriately. Some client supervisors, or their families, assign their home care workers to fulfill roles that they never signed up for. Several home care workers have told me about other jobs where they seemed to be expected to babysit adults, provide emotional support, be a friend or confidant, or substitute for a real social life. Some attendants will try hard to fit the bill, but in the long run such confusing demands can become very difficult.

Make expectations clear. This is obviously good for the disabled employer, because it enables us to explain and get the services we want. But doing so is also very important for the morale of home care workers. If workers don't know what they are expected to do with their time, they will have the stress of worrying that they are not doing what they should be doing.

Treat workers equitably. Don't let one attendant slack off frequently on cleaning the kitchen, leaving messes for the attendant working the following shift. Also, implement the same policies across-the-board regarding tardiness and absences; consequences for last-minute cancellations should be the same for everyone on staff.

If you have any control over wages (as we do in Colorado's consumer-directed program), ensure equity there too. That doesn't necessarily mean the same rate for everyone. It may be reasonable to pay differential rates for early mornings, late nights, weekends, shifts that involve much harder work such as multiple transfers, and so on. It's also appropriate to give regular raises based on seniority and merit. But make these consistent, based on fairness and not favoritism.

© 2010 Laura Hershey