I’d like to thank ASAN for inviting me to speak tonight. This is a real honor and privilege. Before I start I want to acknowledge all the people who can’t be here in this room, including people who are locked up in prison or institutions and people who have never heard of ASAN or even identify as disabled. They are part of our community and this talk is for all of us.
The theme of tonight’s gala is taking action and I’ll share my experiences and some observations on the challenges and politics of creating change.
First, let’s go back in time. In the 1970s…a weirdo night owl was born in the Midwest. This is a photo of me, a Chinese American baby with a big tuft of black hair, laying on her stomach on top of a baby blanket with a stuffed animal to the left.
Does this baby look like an activist? Hells, no! [pause] I’m sharing this photo to say that we all start from somewhere and we all have the capacity to take action in a variety of ways. As a disabled baby born into a non-disabled world I had to grow up fast and learn the ways of the dominant majority. I had to advocate for myself just to survive and it wasn’t until I was a young adult when I realized systemic and cultural change is my ultimate goal. It’s not just about getting my immediate needs met, it’s for the other people around me and future generations.
It took me a long time to identify as an activist because there are so many ableist BS ideas of what activism looks like. I learned how to be an activist through mentorship, collaboration, and experimentation. I became an activist by telling my story and centering my lived experience as expertise.
So, why do we want to take action? For me, it’s because I care deeply about a lot of things and I want to create change. What do you care about? Maybe it’s public transit, horrible sidewalks, climate change, or gentrification. Being curious and nerding out on something is the first step to civic participation. I believe civic participation is a key aspect of community living that doesn’t get talked about enough. Community integration is so much more than going to work or school, living outside of an institution, or making your own decisions. It’s about taking an active role in the way society is governed by infusing your particular wisdom and perspective. It’s about being seen and heard. And your view of the world is unique and invaluable, no matter what others may say.
While the disability community continues to face barriers and exclusion, our views are vital to create a more just and accessible world. For example, this past October the major utility in California decided to have a series of voluntary power shut-downs in 38 counties impacting millions of people, including people who depend on power to stay alive. It shouldn’t take media coverage of death and suffering for decision-makers to realize in hindsight that maybe disabled people should have been part of the planning process. I was on Twitter a lot sharing my fears and raising concerns to anyone willing to hear them. Here’s a screenshot of a Tweet from October 9, 2019 that says, “Journalists covering hashtag PGE shutoff: do interview older, disabled & chronically ill people impacted; find out the numbers of customers on the medical baseline program impacted by shutoffs; describe the shutoffs as something more than a mere ‘inconvenience’ hashtag PSPS hashtag Crip The Vote.” While I got an email from some dude saying I was complaining too much, I know this is an example of taking action.
Most of my current activism happens on social media, especially Twitter. Twitter is my online home where I get a lot of stuff done. Just to be totally real with y’all, this is me most evenings around 3 am: this is a photo of a brown and white tabby cat with folded ears sitting on a chair staring intently in front of a laptop. I’ve been a co-partner in Crip The Vote since 2016 and it was created by my friend Gregg Beratan who reached out to Andrew Pulrang and me in the winter of 2015 because all of us noticed the absence of disability in the upcoming Presidential election. Without any funding or infrastructure, we wanted to encourage disabled folks to talk about politics and policy issues important to them. By using the hashtag Crip The Vote, we created a virtual place where people can engage in conversations and learn from one another. Fast forward to 2019 and we’ve had over 53 Twitter chats or live-tweets of events such as debates or conventions. Crip The Vote is now a full blown movement encouraging the political participation of disabled people everywhere. In my opinion, creating space for the disability community to connect and share information is foundational to activism because you have to know what’s going on and understand you’re not alone, you’re part of a community that has a multitude of histories, ideas, and cultures.
You don’t have to be involved in a huge grassroots campaign, attend a protest or rally to take action. If you want to take action and don’t know where to start, focus on knowing yourself better. Learn from others, unlearn your own implicit biases, and shape your advocacy in a way that works best for you. It doesn’t matter how much you do or how fast you do things in comparison to others. Do not consider your boundaries and limitations as a weakness but as a form of self preservation. What guides my work is the question, “Does this give me joy and how much do I give a shit about this?” I try not to be morbid but I think a lot about what I want to do with my remaining time on earth and this question helps me sort what’s important and what can wait. And you’re going to make mistakes–there is no such thing as the perfect activist or advocate. It takes practice and time to get a feel for what is involved.
On being an activist, I’m reminded of the poem by Laura Hershey, “You Get Proud by Practicing.” While I am proud to be part of the disability community, we should recognize our achievements and the need to reflect on our strategies, approaches, and engagement with others. Frankly, there’s a lot of poop in the disability community that we need to work on. I’ll just say this say this:
We cannot build power and organize when we dismiss multiply marginalized people within our community. We cannot build power and organize when we consider the access needs of some disabled people as too difficult or burdensome. We cannot build power and organize when the experience of ableism is used as a shield for racism, sexism, and xenophobia. We cannot build power and organize when we act as a monolith focused on a single issue or valuing a particular approach above others.
And we must unequivocally reject bigotry, oppression, hate, and violence in all forms within & outside of the disability community. There are consequences to our words, actions, inaction & exclusion.
Here are a few questions I wrestle with: How do we lift up everyone? How do we stop exploiting people’s time and labor in the name of activism? How do we bring in folks who are part of our communities that have yet to identify or do not feel welcome? How do we work across movements & truly show up for others in solidarity? How do we expand the ideas of who gets to be an activist and what activism looks like? I hope we can answer these questions together.
As I mentioned earlier, I take action because I want change for us by us. And I try to remember that change is a verb. Change does not begin and end with a piece of legislation. Change is a calling and creative practice. Change doesn’t happen overnight and sometimes we may never see the fruits of our labor.
We may live in an ableist world where our competence & identities will be challenged when we speak our truths and make ourselves known. But we can’t stop and we won’t stop because the stakes are too damn high for all of us today, next fall with the Presidential election, and in the future.
There’s a Vulcan philosophy from Star Trek: “Infinite Diversity in Infinite Combinations.” It’s the idea that embracing difference generates progress and beauty. I have faith in the infinite potential of disabled people. We will lead the way in transforming activism as we know it because of our differences and creativity. And I believe in all of us: the folks in this room, on the Internets, and beyond. Live long and prosper, my friends.