[I originally posted this piece to my old Journeys with Autism blog in April of 2012. The subject of activism and disability came up in a conversation today with several other disabled people, so I'm reposting the piece here as a point of discussion.]
How do you define activism?
I’ve been chewing on this question for awhile. It’s come up for me lately in the context of my graduate course. We are being asked to talk about the social relevance of our work, with an eye to bringing together theory and practice.
I find myself balking at the dualism of theory and practice. Surely, at least in the case of disability rights, disability theory is essential to thinking about how to solve problems, change cultural assumptions that lead to discrimination, and enable people to heal internalized ableism. I’m not sure that, when it comes to oppression, there really is a useful distinction to be made between thought and practice; after all, analyzing and critiquing oppressive norms like racism and ableism is part and parcel of creating change. For myself, reading disability theory has enabled me to move through discriminatory situations with a great deal more consciousness about what is actually going on (i.e. that it isn’t about me and “my problem”), and to therefore advocate for myself more effectively. When I can do so, not only do I help myself, but I also serve notice to people that the next disabled person who comes in the door may very well be prepared to do the same.
Perhaps the real issue isn’t the difference between theory and practice, but audience. For example, if academics are writing theory and it never goes beyond other academics and the pages of academic journals, then it cannot have an impact on ordinary people who need new frameworks in which to operate. This is a significant problem in academia. Except for my current graduate program, which is interdisciplinary and therefore oriented toward problem-solving, my experience in the field of humanities has been to be fired up with passion and outrage about the injustices of the world, only to hit the hard brick wall of the institution, which provides few opportunities for any sort of real-world practice. In fact, it was the presence of that wall that drove me out of academia for 25 years.
But my question about what constitutes activism goes far beyond questions of theory and practice into the mode of activism itself. For me, writing is my primary mode of activism, because it’s the way in which I communicate most effectively. It’s not the activism of talking to my legislators or organizing protests. It’s a quieter activism.
It’s the activism of replying to emails from parents, who ask about sensory issues, or about how to interpret their kids’ behavior, or about why certain language hurts.
It’s the activism of running the Autism and Empathy site, smashing stereotypes, and giving a place to voices that are all-too-often silenced in the popular media, in autism organizations, and in the scientific community.
It’s the activism of reflecting on my life, on my reading, and on my experience in a way that speaks to people who are just finding out that others feel as they do.
It’s the activism of building bridges with parents by letting people know that just as I need respect for my feelings and my process, so I will give them respect for theirs.
It’s the activism of creating a safe space on my blog, in which people who have never known safe spaces can express themselves without fear of being attacked for their perspectives.
It’s the activism of lifting up my voice and speaking out against murder, and abuse, and cultural violence against disabled people.
There are so many of us who cannot talk with our legislators, or organize protests, or do so many of the things that we tend of think of as activism. I am beginning to realize that defining activism is those ways is much too narrow. Of course, all those things are important. But they are not the only way to make change, and defining activism in those ways is to give in to ableist notions of what sort of action is worthwhile and what sort is not.
The fact is that it’s all activism. Every single piece of it.
Every disabled person who has the courage to ask for the accommodations they need at school or in the workplace is an activist.
Every disabled person who comes out of the closet and says, “This is who I am,” is an activist.
Every disabled person who works to defends his or her psyche against a steady onslaught of devaluation and dehumanizing messages is an activist.
Every disabled person who shares the words of another disabled person, and thereby helps to create a network of mutual support and pride, is an activist.
How could it be otherwise, when simply being disabled and loving our lives is a radical act?
© 2013 by Rachel Cohen-Rottenberg