Disability Justice in the Shadows: The Unseen Labors of Black Sibling Caregivers

• In Event: Intersectional Disability Justice Critical Autoethnographic Counter-Histories as Living Archive

Abstract

Objectives
Anti-Blackness is ingrained in our society's structure, perpetuating systemic inequities that affect the daily lives of Black families, particularly in caregiving (Lindsey et al., 2024; May-Machunda, 2024). Drawing on Critical Autoethnography (Jones, 2016), this work explores the constraints of caregiving within the context of racialized, gendered, and economic oppression. Drawing on my experience as a Black caregiver from a low-income background and as an elder sister and caregiver for my brother with disabilities, I highlight how caregiving, especially for Black daughters, can be both a carceral and a means of radical resistance.
Perspectives
Grounded in Disability Justice (Sins Invalid, 2019), which emphasizes interdependence, intersectionality, and collective access practices, this approach is essential for sustaining the lives of disabled people of Color within systems that neglect and contain them, thereby explaining their positioning and treatment. This paper also engages with Patricia Hill Collins' concept of "Motherwork" (1996), recognizing Black women’s caregiving as both a labor of survival and a potentially confining position, shaped by intersecting forms of oppression. These frameworks highlight the often-overlooked forms of knowledge that can be gleaned from sibling relationships and sibling caregivers.
Modes of Inquiry/ Data Sources
Black siblings supporting loved ones with disabilities strive to maintain their own well-being and that of their families while facing the challenges of an anti-Black society. Using Critical Autoethnography as my method (Jones, 2016), I will document and analyze my lived experiences, focusing on how caregiving intersects with race, gender, disability, and social control. I will explore how everyday spaces, such as schools and healthcare systems, serve as carceral environments (Gilmore, 2002) for my brother and me, revealing how these experiences differ in our lives. This approach highlights lived experiences as valid knowledge and examines how anti-Blackness and ableism affect family caregiving, survival, and identity.
Substantiated Conclusions
Through this work, I aim to contribute to discussions on disability justice, Black family life, and carcerality. Reflecting on my position as his non-disabled sister, despite having a low income, I have been able to navigate and create opportunities for myself that would not have otherwise existed, such as being a PhD student at an Ivy League school. However, due to my brother's intersectionality of being both disabled and low-income, his existence is largely ignored by society entirely.
Significance
This paper theorizes that the role of Black daughters emerges as a valuable form of care labor at the intersection of disability, race, gender, and poverty. In this context, sisters often take on roles as advocates, protectors, and intermediaries within institutions that are not designed with their needs in mind. The paper calls for an examination of the strategies employed by Black daughters in caregiving roles, both as a means of survival and an act of resistance against oppressive systems. Additionally, it emphasizes the importance of personal narratives in disability studies and broadens the concept of "carceral" to include institutions that confine disabled Black lives and their families.

Author

• Ayana Cheyenne Colvin, University of Pennsylvania