On Caregiving, Disability Justice, & the Power of Community Care
I’ve been thinking a lot about what it means to be a caregiver. This is in large part because the person I’ve always considered the ultimate caregiver in my life was recently in the hospital. My grandma cared for my grandpa, who had a progressive degenerative illness, from before I was born. Growing up, my parents would drop me off at her house nearly every night and we’d have dinner together. My grandma would occasionally get up to tend to my grandpa, who could not walk or talk, was fed through a tube, and needed to be bathed and changed by others.
how we learn to be caregivers
I didn’t understand until I was much older that my grandma had entirely transformed her life in order to care for my grandpa. She would sometimes have a paid caregiver come over so she could run errands, but outside of that, her world revolved around him.
The invisible labor of caregiving
Now I have many questions about what that commitment meant. How did she learn the skills she needed? How did her life change as she stepped into this role? Did she have someone to talk to about the grief and loss she must have felt as her husband’s abilities changed? And then there are the questions I think I already know the answers to but am reluctant to face, namely, who was there to take care of her?
These questions feel especially urgent for me because I have always known that I would be a caregiver. My brother Alex, a year and a half younger than me, is Autistic with high support needs and requires supervision at all times. One of my earliest memories is my mom telling me I would one day be Alex’s guardian, responsible for all important decisions: medical care, housing, social activities. The expectation felt overwhelming. How could I care for someone else when I was still learning to care for myself?
Rethinking What Caregiving Really Means
Lessons from Care Work: Dreaming Disability Justice—how care is Personal & Political
In Care Work: Dreaming Disability Justice, Leah Lakshmi Piepzna-Samarasinha reframes care not as obligation or pity but as a communal practice grounded in love, resilience, and liberation. Care in this framework is both an ethical and political act. It sustains the people being cared for and affirms the humanity and capacity of the caregiver. Looking back, I can see that my grandma’s work was heroic, but it was also profoundly human. She was not just a caretaker, she was a person navigating grief, love, and the limits of her own life in real time.
Now, as a therapist with a master’s in social work, I understand the importance of structures that provide tangible support, such as food, housing, and childcare. Yet I also see that when care exists only within these systems, we risk undervaluing the personal, relational work that sustains families and communities. Our capacity to care for one another is innate, even if it takes different forms. Recognizing this is essential if we want care to be both sustainable and just.
Reimagining Community Care
Caregiving as love & solidarity
Deciding whether the term “caregiver” fits for me feels like trying on shoes that might be too big to walk in. My parents are still alive and they are primarily responsible for Alex’s care. Does the title feel too large for my current role? But then I think about my grandma and the difference it would have made if people had stepped in to give her even a small reprieve. I think about all the people who want to care for their loved ones and cannot yet imagine a world where there is room to care for themselves.
We get there by choosing to see caregivers not as heroes but as people. People doing demanding, often invisible work whose labor is essential to the lives of those they care for. Community care is about seeing how others can lessen your load and being willing to do the same for them.
Building networks that share the load
I may not be Alex’s official guardian, but I am a caregiver. I spend time with him, take him to programs, introduce him to friends I trust to be kind to him. I work to keep him safe in a world in which that is not always a given and support my mom when the weight of responsibility feels too heavy. This work is demanding, complicated, and sometimes exhausting, but it is also profoundly human. It is an act of love and a practice in solidarity. It reminds me that caregiving is not just a role or a title, but a thread that connects us to one another, a way to live in the world with attentiveness, commitment, and care.
If you resonate with this piece and regularly care for a loved one, you know that one of the greatest challenges of caregiving is finding space for yourself to replenish and restore. We know how important and essential acts of community care are and that support for caregivers is essential, too!
We encourage you to check out Sarah’s new group, Making Room: Caregivers Therapy Group, so that you can have a weekly space to feel all the complex emotions that arise from being a caregiver. Make room to be with others who really get it, make space for your wants and needs, and get support for all the complexities that you’re holding—all without judgment.
Featured therapist author:
Sarah Barukh, ACSW, the eldest of four, was shaped by her responsibility and deep familial bonds. She is a sister to a brother with high needs autism, which has given her insight into caregiving, advocacy, and the complexities of family dynamics. Sarah is exploring her Ashkenazi and Mizrahi Jewish identity through Reform Judaism, finding meaning in tradition, culture, and community. She is also personally familiar with the emotional and practical challenges of supporting a loved one through serious illness, and has struggled with anxiety since childhood, which gives her a personal understanding of what it means to live with and work through it. She is engaged in social justice and organizing, with experience in political campaigns, labor organizing, and collective action.
In her spare time, you can find her checking out way too many books from the library, sweating it out at Dance Church, getting lost on a new hike, singing at the top of my lungs in the car, and FaceTiming with the people she loves who live too far away.
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