Disabled Caregivers' Utopia

I am drawn to the idea of a Disabled Caregivers' Utopia and what that concept could mean for each person with a disability. Accessibility is a universal need, yet every individual’s experience is unique, and caregiving is equally complex. The support offered to disabled individuals—whether through programs, financial aid, mobility tools, or mental health services—varies widely. Likewise, the help required by disabled caregivers is multifaceted, encompassing both emotional and physical support, the embrace of community, co-parenting, and the experience of being “held by others as you hold your own.” There is so much to unpack within these overlapping roles and needs.

The term “utopia” has dual meanings in Greek: it can describe either “a place of ideal perfection, especially in laws, government, and social conditions,” or “an impractical scheme for social improvement.” The impracticality inherent in the latter definition gives me pause, particularly as a disabled individual. Many of the accommodations that would make my life easier—or simply equitable—are often dismissed as impractical or treated as afterthoughts by society.

The notion of “a place of ideal perfection” becomes especially fraught when viewed through the lens of a disabled body. The pursuit of perfection carries with it the implicit message that anything outside of that ideal is inherently “other.”

It is within this space of otherness that my caregiving exists. So, the question remains: where do we, as disabled caregivers, fit within the broader vision of a Caregivers’ Utopia?