CARE AND COMMUNITY EMPOWERMENT: COALITION-BUILDING BETWEEN HOME CARE WORKERS AND DISABILITY RIGHTS ACTIVISTS.

• Author: Kozak-Oxnard, Andrea

Abstract

This Note looks closely at the issues facing home care workers and the persons with disabilities and older persons who consume that care. It argues that without seriously taking into account the unique intersectional needs of both care providers--predominately low-income women of color--and care consumers--generally persons who have disabilities, are elderly, or both--advocates will fail to create empowering care partnerships. The Note discusses the ways in which a purely feminist or disability rights lens fails to take into account the complex dynamics of the home care relationship, and suggests that scholars who have integrated the needs of care workers and care consumers have provided what should be considered foundational theories for home care empowerment activism. It implores advocates to continue to look to theorists that holistically incorporate feminist scholarship and disability rights scholarship in order to best understand the complex, multidimensional issues facing participants to relationships of care. The Note also examines advocates and organizations already doing this kind of integrated work and argues that they should be promoted and emulated, to the extent that their efforts have been successful. Finally, the Note lays out several possible policy solutions that would serve the needs of home care workers and care consumers, empowering and elevating all care participants, and contends that these should be prioritized in advocacy efforts going forward.

INTRODUCTION

"My [personal assistant] is my right-hand, she s my angel."-Joann Vitiello, care consumer (1) "Workers like me face tough decisions all the time--should we pay the tuition bill or fix the oven that broke right before Thanksgiving? Can we put gas in the car to take our consumers to medical appointments or do we need to save that money for groceries? " --Alantris Muhammed, home care worker (2)

"You can't teach compassion. That's why we need a raise--so that people like me can afford to do the work we love. "-Liliana Cordero, home care worker (3)

A home care worker in Seattle, who juggles paid work as an aide to an elderly woman with dementia with unpaid work for her own son with autism, finds that her paychecks barely cover her basic household expenses. (4) An in-home aide to a child with multiple disabilities in St. Paul, Minnesota recalls how she was only able to take one week off from work after the birth of her own son, as she was unable to afford to miss any more hours. (5) A home care worker in Chicago, without any paid sick leave, must choose between exposing her elderly clients to her cold or flu, and missing out on crucial wages to support her children. (6) An in-home aide in Brainerd, Minnesota estimates that she has logged over two hundred hours of unpaid work since her employer began to cap her hours; she does not want her bedridden clients to go without crucial services in her absence, as they have no one else to whom they can turn for their care needs. (7)

These stories are not unusual among home care workers, nor among low-wage women workers in general. With one in seven low-wage women working as a home care aide, (8) this is not only the reality for the home care workers' industry--made up predominately of low-income women of color (9)--but instead represents the lived experience of many working class women in the United States. Home care aides are largely comprised of some of the most vulnerable workers in the United States. Overwhelmingly women, significantly women of color and immigrant women, this population earns among the lowest wages in the service industry, and has historically been excluded from labor and employment protections. (10) Because they work within the home and thus out of the public eye. domestic workers--including home care workers--are at high risk of exploitation and abuse. (11)

However, the realities of the home care industry do not only affect the women who provide care to older people and people with disabilities. The consumers of that care--people who rely on personal aides coming into their homes on a regular basis in order to maintain their independence--are equally shortchanged by a system that chronically undervalues their aides--and in doing so, undervalues their own right to live independently and comfortably at home. Care consumers thus have an equal stake in an issue that is necessary for their autonomy, comfort, and general well-being.

Issues relating to persons requiring in-home care, and the workers who provide that care, will only become more pressing in the coming years, as "[t]he demand for home care workers is expected to nearly double over the next seven years, when more of the Baby Boomer generation will age into their seventies and eighties in addition to the forty million elderly Americans today." (12) The care business is therefore a critical site for continued scholarship and activism.

Moreover, care is an industry with major social, political, and economic repercussions. It is also a social value, a belief system. Care is "a multifaceted term. It is a labor, an attitude, and a virtue." (13) Critically, there are two major parties to any relationship of care--she who administers the care, and she who receives it. Because care work has been systemically undervalued in our society, (14) so have its participants. (15) In addition to the overwhelming percentage of care workers who are women, a disproportionate number of care consumers are also women, due in part to longer life expectancy and higher instances of certain physical and mental impairments. (16) Because the majority of care consumers are also women, their interests, along with the interests of their caregivers, must be of explicit concern to feminist scholars and activists.

Unfortunately, when the rights of care workers or care consumers have been promoted, it has often been without explicit regard to the rights of their counterparts. (17) Because domestic care work, like any employee-employer relationship, can create or perpetuate unequal power dynamics, many workers' advocates have rightfully focused on how these dynamics can be especially exploitative in the home care context. (18) Similarly, many disability scholars and activists have, out of concern for the long-standing violence and in justices perpetrated against them in the name of care, sought to reduce such assistance to its most mechanical functions. (19) Thus, it is not surprising that the movements for more independence and agency for persons with disabilities, and for workplace improvements and empowerment for home care workers, respectively, have not always been undertaken jointly. While neither demographic has expressed open hostility toward the other, their interests are often expressed independently in ways that might not fully consider the potential repercussions to their partners in care. (20)

Failing to examine the nuanced ways in which both care workers and care consumers experience societal disempowerment is, however, a flawed approach. (21) To advocate for a person who requires care "without also advocating for those who are entrusted with her well-being is at once unjust and uncaring toward the caregiver." (22) Similarly, to advocate for the care worker without promoting the rights and autonomy of the care consumer is equally unjust and uncaring.

Although feminism has often failed to capture the holistic complexity of the home care sphere, it may be useful in better understanding this phenomenon. Feminism can. for example, offer a robust theoretical framework of care and of the challenges facing many women who provide it. (23) It can also provide a foundation for why care is important and should be valued--not only on a personal level, but on a societal level as a standard that "reject[s] violence and domination." (24) Further, it can center the experiences of the women who provide and who consume care, elevating their narratives and emphasizing that the personal is, in so many ways, political. (25) An intersectional lens that critically considers home care policies and practices on the basis of gender and disability--along with race and class--is thus vital to creating coalitions that will empower both the providers and consumers of care.

Coalition-building, then, may be beneficial to both sides of the care partnership. As one scholar asks, "[w]hy should either 'side'--workers or disabled persons--have to view the needs of the other as in competition when they must rely upon each other for so much?" (26) At a time when people in power have shown overt hostility to people with disabilities, (27) women, (28) low-wage workers, (29) and immigrants (30)--and particularly people who fall into more than one of these categories (31)--it is more important than ever that these various groups come together to acknowledge and take advantage of their shared interests.

Although there are a handful of umbrella organizations and coalitions that bring together home care workers and care consumers, (32) these entities continue to be the exception, rather than the rule, in the care industry. Working together to advocate for sufficient public funding, increased labor and employment protections, and more consumer-directed care programs, home care worker activists and disability rights activists would better ensure that home care work is improved intentionally, holistically, and sustainably.

This Note argues that such collaboration and coalition-building is the best way forward. Part I provides a background on disability rights and the independent living movement. Part II describes the realities of home care work, including the demographics of those who perforin most of its labor. Part III delves into several of the most common types of home care employment relationships, illuminating the complicated advantages and drawbacks that each arrangement can have for the primary parties involved. Part IV lays out the legal landscape of home...