Malhotra on Caregiving and Disability
It's a very interesting piece on a very important topic.
WHEN MOST ON THE LEFT THINK about the politics of caregiving, they think about finding a caregiver for their elderly parent or daycare for their preschool child. Or they think about the (frequently romanticized and flawed) feminist debates that interrogate whether there is a feminist ethic of caring and the implications of this for feminist politics. One issue that has largely been ignored is the provision of what has come to be known as attendant care or personal assistance services for primarily, but not exclusively, working age people with physical disabilities. This is rather unfortunate because attendant care services actually raise many complex and unique issues that require a close analysis of the politics of attendant care apart from broader issues in caregiving.
Attendant care or personal assistance services refer to assistance with activities of daily living such as bathing, dressing, and toileting. While the exact model of service delivery varies, attendants are trained and directed by the disabled person, generally referred to as a consumer of attendant care services, to allow the disabled person to live independently in the community. No special medical skills are required. And they are fundamental for many people with disabilities, a historically oppressed group that tends to be on the margins of society with respect to employment status, educational levels and income levels,1 to achieve full citizenship. This encompasses participation in the labor market or the ability to pursue post-secondary studies, the freedom and opportunity to enjoy recreational opportunities and generally flourish as respected equals.
Moreover, adequate attendant care is crucial in maintaining health and a high quality of life for many people with disabilities. A failure to provide attendant care services would be particularly disastrous for parents with disabilities and may even result in a judicial determination that parents with disabilities ought not to have custody of the child.2 Unfortunately, funding for such programs is often very limited and the work force, one that is disproportionately made up of women of color and recent immigrants, is often transient and poorly paid. An alliance between union activists who organize personal assistance services and consumers would dramatically transform the politics and legal regulation of the sector from below and potentially enrich two distinct social movements in a mutually beneficial way. Nevertheless, while highly desirable, such an agenda can only proceed to fruition if both constituencies truly respect the other and overcome a number of barriers that impede greater solidarity.