When I was growing up, there weren’t very many people with disabilities in our small rural community. It wasn’t until I went to university that I was truly introduced to disability culture. For myself and the few others in our farming township that had disabilities, we adjusted ourselves to the world around us, and our families made whatever accommodations we needed at home.
In those days, educational legislation was new. My parents, alongside the others whose kids with disabilities were ready for public school, personally ensured that we received our free public education; but they also made sure we kept up with the pack and met expectations. Thinking back, the 20/20 hindsight of how much my parents, the schools, teachers, and administration did for me — while holding me to standard — was truly remarkable. Remarkable not because it was emerging federal law, but remarkable because everyone involved seemed to collaborate and make it a do-able endeavor simply because it was the right and obtainable thing to do.
Despite all of the groundwork that enabled me to launch, I still think of my worldly education really beginning when I went away to college. Prior to the start of the regular semester, incoming students with disabilities were required to attend six weeks of collegiate independent living skills and take some general education courses. I admit that I felt ego-bruised at the idea of needing independent living skills because I had grown up helping with cooking and managing things for myself up to my ability my whole life. In my lack of exposure to other people’s disability experiences, I assumed this was how it went for everyone.
I was gloriously wrong. I had no idea what I was missing, or how much I needed to know about disability in the real world. Real life education began on day one when I encountered an array of types of disabilities, with an array of capabilities, and a broad spectrum of experiences very different from my own, for the first time. The people I met seemed to speak an entirely different language to me. They swapped stories of being in the trenches of rehab and post-rehab from injuries. They knew about wheelchair basketball. They rolled around in these hot looking chairs and used mobility equipment of every color and style that I had no idea existed.
The immersion was incredible. Within that six weeks course I lost my baby fat — literally. I teased my late 80’s hair higher than before, got a tan, discovered adaptive sports, learned to gamble, tried wheelchair racing, got into adaptive power lifting, learned about wheelchair dance, and played wheelchair basketball. I started dating, I went camping, I learned drinking games, I met people from all over the nation, I discovered wheelchair fashion, set an intention to get a tattoo in the near future, I heard and learned disability jargon. I ordered my first custom made manual wheelchair that was — hang on — leopard print! And yes, being it was college, I have to say that I performed academically much higher than I ever had before.
I learned a lot about myself and others those many years ago — memories and revelations that I still keep close to my heart, along with the friends I had made — for a lifetime. I heard their stories, marveled at their survival, sometimes balked at their bluntness, and tuned into our similarities.
Since then, so much time has passed, and in some ways — like most college graduates — I look back on my university years as the best years of my life. Only that would have to be qualified categorically, because I also love where I am today, and I’m thankful for all that I’ve learned since then.
I eventually went on for my Masters. I got married and became a mom through adoption. I worked odd jobs, taught part time, and relocated a few times as a newlywed before settling in where we are now. I lectured as a full-time university instructor for nearly twenty years. Recently, I left my post to pursue lifelong goals that have everything to do, ironically, with disability culture. The funny thing about learning is, I have discovered we’re never meant to be done with the process.
Through it all, I’ve come to develop a fusion of cultures within myself, which I’m still learning to navigate. Sometimes, in an ableist world, it feels like a total split…like I have one foot in one world and one foot in another, and its a total struggle to get the two worlds to fit together. But out of that, I believe there is a bit of an overlap where a whole new culture is born. It’s an entirely different, out-of-the-box way of existing in a rapidly changing world. I think of it as a meta-world existing within the physical world that is tangible to us, yet traversed rather uniquely.
My belief is that it can be done with style and intention.
To me, the Carpe Diem is not just about seizing the day, but seizing the wheel, seizing the visibility of participation, seizing the teachable moments where we educate the societies we live in by doing, and ultimately by showing them that we all live outside the box each in our own ways, and that’s okay.
It’s okay to parent differently. It’s okay to run a household adaptively. It’s okay to parent from a unique perspective. It’s okay empower yourself through your work, your way. It’s okay to love who you love, and be loved in return. It’s okay to believe in whatever feeds your soul.
It’s all okay.
This is what makes disability culture shareable, knowable, and recognizable to a diverse world that rarely catches a glimpse of the inner-workings of what it takes to make being a rolling diva (rolling person, person with a disability, differently abled…) look easy and meld into the teeming tableau that is society.