I’m 41 today.
I’ve been disabled for all of those years — born with cerebral palsy. The first label, “disabled,” means a whole lot to me as I’ve developed into an adult, but for me, cerebral palsy is hardly more than a medical label applied to me that gets me in the disability club. My particular flavor of CP, necessitating use of a powered wheelchair (I’ll use the term powerchair) is little more than a medical diagnosis — it’s something for categorizing the collection of impairments and medical deviations from norms, and unless I’m having a particularly bad day of clonus (definition as provided by “famous” physical therapists Bob Shrupp and Brad Heineck in this profoundly amusing/disturbing YouTube video), the CP isn’t a prominent part of my life.
Being disabled is a prominent part of my life.
17 years and two days ago, I began to live independently.
I messed up a lot. A lot, a lot. And I’m certain, by some measure, I’m continuing to. Living independently, as a disabled individual, is equal parts just living and fully realizing one’s own identity as disabled. It’s entirely possible that most of my intense difficulties could have been mitigated had I sooner fully realized my identity as disabled. I am intensely grateful that the Sacramento community — more specifically, Resources for Independent Living — gave me the space to realize a core part of my identity.
Six years and four months ago, I became an activist.
It all started with a Facebook post. It sounds weird, especially now, to be admitting this. It’s fact, however. A Facebook post brought me to Fremont Park on October 2, 2011 and less than a week later, Occupy Sacramento began in Cesar Chavez Plaza.
The experience of intensely knowing the struggle of Sacramento was invaluable. Occupy Sacramento was a messy, intense place — that was without question. However, the experience forged within me an awareness of the profound inequity in our own neighborhoods, states and the world at large. I began to acknowledge my own place in the struggle, as disabled yet complexly privileged. As this realization came, so did the passion to speak out. The voices of the marginalized deserve to be heard, and if I could spend the entirety of my life on one cause, it would be acting as an amplifier for those who struggle.
Two years ago, I became a Socialist.
I’m not going to dive into a Marxist analysis of my entire life right at this very moment. There will be plenty of digital ink for such things in the future, don’t fret! For the sake of brevity, we will keep this short for now…
I was fortunate enough to find a group of people locally, members of the Democratic Socialists of America, who have encouraged me to believe that a different reality is indeed possible. Occupy showed me there was a need, and the DSA has been a safe place to work toward a profoundly democratic society in which we recapture something we all seemed to know as children: the value of a society built on sharing and working together.
Seven months ago, I became a member of the working class.
I had spent a lot of time thinking about work, and all the problems disabled people have to think about when thinking about starting work. At what point are my benefits going to be cut off? What does that look like? Will I still fit in the “Disabled” box on all the forms, and if so, which ones?
And then an opportunity to work — and more importantly, to affect and empower change within the disability community — presented itself. I jumped off the cliff.
Sure, there have been immense challenges. It’s not been easy, and I’m sure that there will be plenty of not-easy yet to come. In many ways, the last seven months have been a lot like 17 years ago, where every day was a new labyrinth of challenges of navigating my own path to survival within a series of policies that have identified me as disabled.
But today, I am working disabled. It’s weird. It’s scary. And I think we don’t allow enough people to see into our, frankly, rather elite club.
So on this day of rather insignificant age change, this is my birthday present to myself: to encourage my own sharing of life experience and ruminations about things. I’ve put this off for too long.
Hello again. And please, if you do feel moved to comment, do! (Okay, okay, simple ground rule: Be respectful and be kind. Otherwise, all comments are welcome. Additionally, please don’t be offended if I do not respond.)
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