HOBBIES

I Just Keep Rollin Rollin Rolling: Live with a Spinal Cord Injury

Spinal Cord Injury (SCI)

Priya Ray

How I sustained a spinal cord injury

I fell through the deck of a half pipe onto the floor in February of 1999.  I do not skate. It was in a DIY warehouse in Atlanta, Georgia where my band had played many times. I sustained a spinal cord injury (T 12 – L1) and while many people witnessed it, I don't really remember how it happened.

The Realization of a New Life with a spinal cord injury

l slowly started to understand the extent of my sudden paralysis, and tried to process my new spinal cord injury. I hadn't really thought about what I was going to do with my life as much as I was thinking how I would continue to live life as I previously had. Slowly through physical therapy and extreme endurance, I readapted to life. It was as if I was an infant again, but in a 29 year old body. I had to learn how to do everything; getting in and out of bed, going to the bathroom, taking a shower, getting into a car, brushing my teeth, learning how to drive, how to get up if I fall, etc.

Deciding what to do after my Spinal Cord Injury

Before I had my spinal cord injury I was a  musician and a photographer.  My band 'Kreamy 'lectric Santa' had been part of the DIY music community for over 20 years. If you're not familiar with the DIY music community, let me explain. DIY means 'do it yourself' and it allows you to connect with people who are part of the similar communities all over the world. The DIY community exists for art, literature, even building homes, but in the context of music, bands often tour independently. People host bands at their house or at independent venues of some sort. This allows the band to be able to tour and play their music without ties to corporate interests. So, after I was injured I had thought about whether I wanted to give up playing music or even being part of this community that I had been part of most of my life. A community that I supported and in turn has supported me, where I've met my closest friends, and provided a viable place to be open and creative. My answer was no.

Realizations about the disability community

When I started to play music in this environment, I began to realize that the ADA laws do not require someone to make their house or basement handicap accessible for gigs. Despite the obstacles, I found ways to get into these houses, basements, and warehouses and play my music. Often with guerrilla tactics such as crawling, being carried by people too drunk to walk (won't do that one again), or lifting myself and thumping up each step on my butt. As I did this repeatedly over the years, I began to realize that this community I had been part of so long, one that fought for the rights of women, people of color, and the LGBTQ community lacked activism for the disabled. There were so many times where I played the part of an audience member and realized the lack of awareness people had about my disability. I would get texts and invites to see many bands, but the information about the accessibility was pretty much vacant. If a woman, a person of color, or a person that was part of the LGBQ community were unsure if they could attend an event, there would always be a community fighting for their rights to be there. For a disabled person, you receive responses such as "I don't know if it's accessible", "Here's a number to call to find out if you can attend", or the worst — no reply at all. I began to realize how this lack of awareness for the disabled existed beyond my community.

It became more and more evident that I had become part of another DIY community: The disabled community. Trying to navigate sidewalks with cracks that were so huge a wheelchair couldn't get over them was very similar to attempting to access someone's basement. The obstacle was there, and even though it is breaking the laws the ADA has put in place, you as a disabled person cannot expect a large group of people to rally for your rights. Instead you have to figure out how to navigate around it so you can live the life everyone else does.

From Spinal Cord Injury to Taking Action In Advocacy

When I see this kind of injustice I feel compelled to correct it. I feel change can only come from action. I began taking a couple of action steps to spread the word to the world.

First is my body of photographic work, Completely Tilted Back, taken when I am completely tilted back in my wheelchair. The chair was equipped to do this because I suffer from a disease called neuropathy due to my spinal cord injury. It causes me to have great amounts of pain that is indescribable. To release pressure off the buttocks, increase circulation, and give me some relief, the chair tilts back to give me more independence to take part in everyday activities. This work celebrates the independence I have while showing what I see when I am tilted back at the various places I go to in my daily travels. You can see these photographs, and others, on my Instagram account (@pripee3) or the book that I self published.

The second thing I did was start a website DIYabled (DIYabled.com) with a blog in which I talk about ways my independence is prohibited in the world I live, while also encouraging others to share their experience in hopes that it will raise awareness of what people with disabilities have to struggle with to obtain an independent life.

The last thing, but certainly not the least, is the zine I'm working on which deals with handicap parking issues and why it is so important for disabled people to have these spaces available to them. I strive for people to know how important independence is to people with disabilities. Without it, a person's potential is not only wasted but it can lead to apathy and depression. These are very common issues for people with disabilities due to isolation. If I can encourage a disabled person to not let their disability keep them from living a full life, or make able bodied people understand what they can do to promote this independence, I consider my efforts a success.

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