Disability and Representation

Changing the Cultural Conversation

How Do You Define Activism?

[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

    5 comments already | Leave your own comment

  1. 11/20/2013 | 8:02 pm Permalink

    Some of us don’t have the energy for public activism; writing is also a good mode for us.

    One of the things you lose by having something like CFS that robs you of energy is not leaving the house very much. I am not a reliable person – to be that I have to spend a lot more time than a ‘well’ person, because it involves taking extra rest periods before and after, having enough time to sleep in the car if I have to drive home after something long – things well people don’t even think of.

    Doesn’t mean I can’t think – and occasionally write.

    And I appreciate enormously the people who are not sick – and take a part of their lives to help others. I wish I could do it, too.

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  2. 11/21/2013 | 1:22 am Permalink

    Hear, hear. I could not agree with this more.

    I write at my Livejournal and more recently, Silver into Steel which I created specifically for disability and intersectionality issues. I’ve chronicled my journey from mentally ill and disintegrating, to diagnosis, through treatment, all the way up through getting on disability officially. I’ve talked about the toll it’s taken on me. I’ve talked about what has worked for me and given me hope. I’ve talked about what makes me angry. I’ve talked about things people do right, and things people do wrong. I’ve bared my soul, and people have read it.

    And I challenge anyone to look me in the eye and tell me that I’m not an activist. I know for a fact I saved at least one life. She told me so. I know someone else said they were going to seek help for what was likely an eating disorder the next day. I know that when I was writing more and Livejournal was more of a going concern, barely a week went by that someone didn’t write to me in gratitude saying that I helped them.

    Therapists have printed out things I’ve written to show patients, and vice-versa. Parents have shown things I’ve written to their kids, and kids to their families. I have helped people find words to express their feelings, whether that’s to themselves or others. I’ve given people HOPE.

    That’s activism.

    There’s at least one beautiful-to-the-bone young woman alive because of me — I heard her heart beating when I hugged her, and I still cry every single time I think of it. It humbles me utterly. A human life. Because I answered a late-night email without knowing how much she needed that contact. Because I chanced on the right words, and took the time to respond to something that had no outward signs of desperation, but which still “felt” off. She’s troubled, still, her life is very hard, but she’s alive.


    I fought my way through the system and was approved for the pittance the government allots to me.

    That persistence is activism, too.

    And the persistence of every single person who reads me, who finds some value in what I say, and uses my words to bolster themselves, whether that’s to confront a doctor, go to a hearing, or just to get through another day, that’s activism, too.

    “Merely” continuing to exist in the face of a culture that seeks to grind us under is activism. I use quotes, because there is nothing “merely” about it.

    What you do is activism. What you do is undeniably activism. It makes a tremendous difference. I salute you for it.

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  3. 11/23/2013 | 2:17 pm Permalink

    Don’t worry about it.
    Every movement has had people playing different roles. No one person could do it all all the time.

    Strategists are nothing without doers…
    Doers don’t Know what’s important to be doing unless they listen to strategists.
    There are some people who are just good at keeping a team together.

    The world needs all types.

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  4. 11/27/2013 | 5:04 pm Permalink

    The older definition of activism you push against so eloquently here is grounded in disablist thinking. Our impairments mean we’re not reliably strong, capable of action every day, always willing to push in where we’re not wanted — and that’s OK.

    I’ve learned the importance of interdependence, because I simply can’t do everything myself. This interdependence spreads to activism, where we each contribute where we can. One of the genius insights of disability theory is we can trust each other to do what we can, and ask for help when we need it.

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