Rolling Without Limits

Your mobility may be limited. Your voice, boundless.

Boston, by Way of Nevada.
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Boston, by Way of Nevada.

When I moved from Nevada to Boston in the summer of 2012, I had no idea what lay before me. It was a wildly intimidating and exhilarating venture. Throw in a relationship and lots of new milestones in life, and it is an even bigger whirlwind of emotion. Here is the somewhat condensed story of what can be possible with some hard work and determination. I had grown up in a very rural community, and had only lived away from home once. Mind you, it was only an hour away, and I was rarely there, with my mom, so it didn't really count as "going out on my own." I was born with Spina Bifida, and use a manual wheelchair. I had always found a way to adapt and advocate for myself, coming from a family of strong advocates. I met my girlfriend in 2011. She also came from a family of strong advocates in rural Maine, and had a chronic illness of her own and uses a motorized scooter. We dated long-distance for a year, and when she was accepted to grad school at Boston University, we decided to move in together.

It took a lot of planning and list making of all kinds, considering we needed a cheap, fully wheelchair accessible apartment that was close to public transportation, and a short distance from all the necessities we needed to survive, including the school. The real estate market here is a zoo, especially when accessibility is a huge part of it. We were given the run around by the very few realtors who actually got back to us. When asking about accessibility, we were asked by more than one person if one or two steps was okay. They just didn't seem to grasp the concept of what accessibility is, and that it doesn't just mean having an elevator inside, after climbing up steps. We were also on the hunt for housing from two ends of the country at the time, so it was hard to know for sure what we were getting. Not everyone was aware of what this all meant for us.

We were referred to campus housing that was not really ideal for two people, as well as subsidized assisted living. We decided we are far too independent and mobile for something like that. We needed something that was fitting for our needs, but also met a certain standard for us as respected people in society. It seemed like an endless search that we were afraid would we have to call off. We finally had a friend in our network in Boston take a tour of a potential apartment and film it for us. After we watched the video he took of this brand new, accessible building with a gym and a roof deck, we realized that this was the needle in the haystack. However, we needed to act fast in order to secure it. Somehow we managed to get the apartment after signing papers and sending them between 3 different states. We made the trek and moved in. Things were going great.

For the first few months, it was extremely difficult for me being alone all the time with nothing to do in an unfamiliar place with unfamiliar people. This only got worse when winter came and the snow made it impossible to leave the building. I finally found a steady job, so I was idle and alone less when I could get out. That was fairly short-lived, when on my second day working, I was hit by a car coming home. I had substantial damage to my wheelchair. This set off a chain of events that led to some major life changes. I spent the next few months trying to find a new wheelchair with a company that was not always reliable, as well as fighting with my employer about accommodations I would need for transportation an telecommuting needs. All the while, I was searching for insurance and a primary care provider.

In the middle of winter, my girlfriend started to have startling health issues, resulting in severe immunosuppression, which put a lot of the other issues on hold. She spent ten days in the hospital, and I continued to struggle at work while taking care of her. She made a full recovery and winter came to a close. I was able to see a lot of our family, make new friends in Boston, and continue working. Then things really blew up when I was flat out denied a lot of the accommodations I needed, since winter was over and I had finally gotten a new chair with my own money. I decided I wanted to go where I felt respected, so I quit. As soon as I quit my job, I was able to get insurance and have some real income and a doctor. This was a comfort, but the reality of this was sad and startling.

I was, in a way, back to square one. I started to feel useless and lonely, debating about what I wanted to do with my life. I really struggled. I have since started life coaching, and am playing with the idea of blogging about accessible travel. I have been introduced to the disability community in this "bigger pond." I am a better person with all that has happened in the last year here in Boston. I continue to go through daily life with my girlfriend, learning and struggling, striving and succeeding, all the while hoping to make some change and bring awareness to all these barriers. I hope our experience can be an example of a success story still being written, and that others like us can learn to strive for such success and effective systematic change all over.

 

http://www.facebook.com/OwenandMal

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  1. Owen Erquiaga
    I just realized I left out the part about the Marathon bombing, which left us stranded in our home on lockdown, days after walking four miles halfway to our house when everything in our city was shut down. Thankfully we have a huge network of people, including each other, to race to our rescue when necessary. This also made the winter full of snow, hurricanes, and earthquakes just that much more bearable.
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