Reflections: Care Work Dreaming Disability Justice

 

I listened to this month's Three Aves Book Club selection via audio book read by Leah Piepzna-Samarasinha, which gave me lots of food for thought. 

While the disability rights movement has tended to be led by middle-class white people—and particularly white men—disability justice, from its inception, has been created and led by QTBIPOC, and it aims to center and support them. As Piepzna-Samarasinha says, “Disability justice [is] a movement-building framework, not an academic theory. And if you say what you’re doing is DJ and it doesn’t center disabled Black and brown people, it’s not disability justice.”

Note: I am a white, cis-gendered, aro-ace, self-identified autistic woman with few support needs who has struggled with mental health challenges. I will go into my relationship with all those identifiers in later blog posts this week, but for now, I am going to take a bigger picture view of how I see myself in relation to disability.

One question I have been thinking about is: What is my role in movements that should 100% center communities that are not my own? This is not the first time I have thought about this (for example, I happen to attend a predominantly Black LGBTQA+ congregation that centers the critically needed Black LGBTQA+ experience in its spaces), but I still don't have an answer.

Personally, I struggle with holding space for two truths to be true at the same time. 

Truth #1 Piepzna-Samarasinha draws the umbrella of disability very wide to include everything from visible disabilities to neurodivergence to mental health struggles and the idea that everyone ends up disabled at some point in their lives as they grow older and have mobility issues, sensory issues, etc., so I would clearly be classified as disabled.

Truth #2 Piepzna-Samarasinha states 100% correctly that the disability justice movement should center the experiences of QTBIPOC (Queer and Trans BIPOC), which means that as a white, cis-gendered queer woman, I feel like I can be an ally or accomplice and help uplift the voices of QTBIPOC, but that I "should" not count as disabled, aka I don't feel like I quite belong because I metaphorically don't have enough disability points.

For the vast majority of my life, I knew I saw the world differently from many others, but I internalized that as just me seeing the world differently, not considering or being aware that my way of seeing the world could be named and could be labeled a disability. As a permanent sign at Three Avenues says, "disability is not a bad word," but because of my internalized ablism, I struggle with identifying with the label disability or feeling like I belong within or should be part of a disability justice movement outside of the role of an accomplice. 

I have explored feeling disconnected from communities or identities in a recent blog post, What Would You Call The Chapters Of Your Life?. I know I am not alone in such complicated feelings around community, belonging, and identity. 

For example, Wentworth Miller once said, “I’ve had a complicated relationship with that word, ‘community.” when speaking about mental health, suicidal ideation, and being gay.

In some ways, my relationship with disability and the disability community is similar but not exactly like James Baldwin view in an interview for The Village Voice about being Gay: 

Baldwin: Well, first of all I feel like a stranger in America from almost every conceivable angle except, oddly enough, as a black person. The word gay has always rubbed me the wrong way. I never understood exactly what is meant by it. I don’t want to sound distant or patronizing because I don’t really feel that. I simply feel it’s a world that has little to do with me, with where I did my growing up. I was never at home in it.  

I would say personally that I have yet to feel at home with the identity of being disabled. I feel much more at home with a neurodivergent, mental health, or LGBTQA+ identity than I do with a disability identity. Again, it probably is a combination of ablism and the fact that I have yet to learn how to dream myself into a disability identity. 

But since I don't feel at home with the identity of being disabled, I would generally not identify myself as disabled, which means I struggle to be able to see ways that my other identities make it more difficult for me to do certain activities or have equitable access. I have learned ways to mask so well that I honestly struggle to see when I am struggling beyond a baseline, "everyone struggles in life" level. 

I think I need to spend more time reflecting and dreaming within a disability framework if I am to learn to really thrive. I also am aware such reflection and dreaming will not be easy for me.