Care and Community Empowerment: Coalition-Building Between Home Care Workers and Disability Rights Activists

Abstract

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. …