Chronic Illness

Audre Lorde presents a notion of self care as a radical act. In her 1988 book A Burst of Light, Lorde writes: “Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare” (Lorde A Burst of Light : And Other Essays 130). As a disabled person, this resonates with me. Self care is often not something I am doing because I want to or because it would be nice. It is something I am doing because it is necessary and without it, inevitably I will suffer and falter. 

Living with a disability is an intimate daily process. I must care for my body each day in ways that others do not. For myself, self care is often not a practice that I enjoy or comes easily. Self care takes energy and time out of my day. This notion of self care for me, is not self-indulgence, but necessary self-preservation and something that I must do no matter what. 

Self-care for the disabled is constant and ongoing and cannot be put on pause. We disabled people are not somehow able to just perform self-care on ‘personal time’. It can need to happen at all times. This brings me to the idea of the collective. We work in solidarity to undo what we have learned which we no longer wish to carry in ourselves, our families, our communities, and our institutions, in order to achieve a world that is truly free. We work collectively because we recognize that each of us has a stake in caring for all people. There is community to be found in relationship building, and in the sharing of our stories, including our sorrow and our joy. I believe in communities built on shared power and accountability that foster a just and transformed world.

Audre Lorde is really attatched to this idea that the social health, the lives of others, are where a person derives care for oneself. 

I am too. In my life, without care, I do not function. I have no capacity to provide for myself outside the home. All of my capacity must go to caring for myself and my cat, which I do horribly while also failing to leave the house. With care, my cat is well, I can have a social life, I can graduate high school a year early and go do a master's degree, and all of that means I get to do something of incredible value to me: to care for and advocate for other people.

I know those in my home do not experience me the same as those I work with, and that's fine. Those I work with don't experience my friendship. And I know that's a harsh line to hear, but my personal is the same as my professional. And my professional deeply affects your personal. I know what the line is, and I choose care in both relationships. I get to choose care in both relationships.

Focus Areas

• Living with Disability 

• Crip Theory & Embodiment 

• Case Management and System Navigation/Advocacy

• Mitochondrial Disease