Disability History Month shining light on need for equity, inclusion

I started calling myself an artist in 2019. And that is what I do, I make art. I make really good art. I even have a degree in it. I'm even working on another as I write this, a master's degree! I mostly make art about my experiences having Duchenne Muscular Dystrophy. 

Duchenne Muscular Dystrophy is a genetic disease that causes the absence of a protein, called dystrophin, found in the muscles. Dystrophin is really important for the body when regrowing muscles and keeping the muscle fibers strong. You might be wondering what that really means. 

Basically, the muscles in my body are shrinking because the fibers are breaking faster than they can be repaired. My muscles are shrinking quickly; every year a little more. With them shrinking at this accelerated rate, I am losing the ability to do things. That is what is happening to me, what has been happening since I was born. I lost the ability to walk sometime around the age of 11 or 12. Now I'm 26. 

Lately, I've been losing the ability to move my hands, feed myself or even pick up my toothbrush. And that's nothing compared to how many things I haven't been able to do for years. The hard part is that there is no cure, the best I can do is take medicine to slow the process down as much as possible. 

Sometimes that is really hard to deal with. At 26 years old, I should be looking forward to some of the best years of my life. I still think I am, but frequently I'm so afraid about what I'll lose in the future that I can't enjoy what's happening now. 

I don't tend to talk about the horrible feelings that come up when I think about what I'm losing. I don't like letting people see how I struggle to see how to go on without letting it swallow me up. 

Art has become the thing that lets me fight against my fears. Art has become this meditative experience that's started letting me understand feelings like grief and frustration that are so hard to process in other ways. Art has made me start wanting to share the hard parts so that others can understand why I'm me. 

 I think about those feelings more than I ever have before. People can't tell how angry, frustrated and depressed I can get. It would be one thing if it was easy to get the support I need; but it isn't. There's this harmful internalization of anger that happens because so many services for disabled people are simply impossible to get. I want to live on my own, have a job, and improve myself and my life. There's so much about disability that's glossed over. Sometimes it feels like no one cares, and I know I'm not the only person with a disability who feels this way. 

Art has become a tool for healing and self-expression that means so much to me because I'm uncertain about my future, what it means to be disabled and what to expect next. I've found purpose through my art. In some ways it feels like my way of fighting against the systems that are leaving disabled folks on the sidelines. 

That's why I write in my artwork too. I want to pull away the mask that I often use to hide what I'm feeling. What I've found is almost poetry, and I find it beautiful. 

Finding beauty in the dark is hard to do. 

But there's also an element of catharsis through exposure. I do a lot of reliving memories and re-experiencing feelings. Want to know the most surprising thing about it? The thing that I think of most are the positive parts of my experience. The people and friendships I've cultivated; and experiences I've had through disability that most people don't have. Finding strength through adversity is something that is rewarding and challenging. 

I find benefit in sharing living with a disability and using my art as a vehicle to connect with others. I want to share my experience of being an artist with a disability. 

The Boundary County Human Rights Task Force thanks Kobey Bonin for sharing his experience and providing a compelling look into disability.  Kobey’s resilience led him to help start a club at Oregon State University called the Disabled Students Union to improve accessibility challenges and assist peers with disabilities navigate college and find unity, connection and a sense of belonging.  Read more about Kobey’s inspiring story fororegonstate.org/stay-informed/impact-stories/detail/bonin.