I don’t know how you do it.

“I don’t know how you do it.”

I get this phrase from people all the time. And honestly, I don’t really like it.

I start to explain my life to people, how I’m working three “jobs” dedicated to social justice, managing 12-16 credits of school, working my way through my Lyme treatment protocol, and navigating through so much oppression from the medical industrial complex and widespread ableism. When I talk about these things, often times, people tend to, well, sort of freak out.

Photo on 2-19-14 at 3.29 AM

The people who say this to me cannot fathom the life I’m living. They cannot fathom why I’m doing all of the things I do, or the drive I have. They don’t because they haven’t, and may never have to, experience the trauma that I’ve felt. Furthermore, in their attempt at solidarity and acknowledgement of my struggle, these individuals actually alienate me even more.”I don’t know how you do it” makes me feel like a strange creature, a space that is unable to relate to my peers.

But really, I’m no different from you. I also procrastinate. I also binge on Netflix. I also have the problems you have. The only difference is that my experience with problems I face transcended into something bigger and has given me the drive to do something about it.

So don’t tell me that you don’t know how I do it,
Because honestly, I don’t know how I do it either.

Access Intimacy: The Missing Link

Mia Mingus, queer physically disabled woman of color adoptee, talks about Access Intimacy in this brilliant blog post. I have only had access intimacy once or twice in my life. It’s such a special experience that I can’t let it go.
Have any of you ever experienced access intimacy? What was/is your experience with it?

Best,
Sofia

Leaving Evidence

abstract painting with yellow, purple, pink and red spots.There are many ways to describe intimacy.  For example, there’s physical intimacy, emotional intimacy, intellectual, political, familial or sexual intimacy.  But, as a physically disabled woman, there is another kind of intimacy I have been struggling to name and describe, what I have been calling “access intimacy.”

I have begun using the term loosely and am still realizing different aspects of it.  This is in no way a complete describing of it, instead, this is an initial naming and the beginnings of giving it shape.  I am offering it as something that has been useful for me and I hope is useful to others to describe all different kinds of access, not just in relation to disability.  I think Access, as a framework, is powerful for so many of our lives.  Here, I am speaking from my own lived experience as a physically disabled person but I know access intimacy…

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New Wheelchair!

New Wheelchair!

On Saturday, I got a new wheelchair! It’s a Quickie GT rigid frame ultralight wheelchair with solid wheels. And it’s Lyme green! I LOVE IT.
For the past four years, I’ve been using this crappy Invacare home wheelchair I bought off Craigslist for $50. I’ve used it so much, it’s falling apart. If I go down a slope, the whole chair shudders and almost throws me out. It was time for a change.
I first decided to get a new chair in June. So for six months, I fought and fought through the bureaucracy and misinformation that is my insurance company. Every time I spoke to somebody on how to get this paid for, they told me something different. Nobody knew what they were talking about. Finally, after about 3,849 fights with the insurance company and incompetent medical supply stores, I decided to circumvent that whole process and buy a wheelchair privately.
I scoured and scoured eBay and Craigslist to find one that would be an upgrade from the Invacare I was dealing with. I finally found one that was exactly what I wanted. Even though the seller was difficult, I finally got this baby.
I’m so so so happy with this wheelchair! It’s so light that I can lift it by myself without straining any of my muscles. Today I went Christmas shopping in it and I never got thrown out! It’s amazing. So easy to use!
This wheelchair will make my life so much easier. I’m often limited to the things I can do because of the clunkiness of my chair. This changes everything! I’m excited. 🙂

Best,
Sofia

Disability Awareness: The Ability Exhibit

Last week, something really cool happened at my school. And I was involved in it!

The Ability Exhibit. Thanks to several amazing people, this traveling exhibit came to the University of Oregon! The exhibit is an interactive experience meant to display the many different facets of disability in a fun and informative way. The end goal is to raise consciousness about what it’s like to have a disability. For more info, visit their website!

As the president of the AccessABILITY Student Union, I helped facilitate the exhibit for most of the time it was on my campus. It was awesome!

 

Me and my fellow disability activist friend, Antonia sitting at the Welcome Table

Me and my fellow disability activist friend, Antonia, sitting at the Welcome Table

The exhibit talked about various topics related to disability awareness, including person-first language, universal design, disability law, and historical milestones of the disability movement. Each topic was addressed at a different station, which were all set up in a square shape in my school’s student union.

This was at the person-first language station. If you remove the panel, it says "Person who uses a wheelchair"

This was at the person-first language station. If you remove the panel, it says “Person who uses a wheelchair”

Person-first language is important in the disability movement. By using person-first language,  the speaker is able to separate the person from their disability, rather than equating both.

This is a quiz about disability law in higher education. The answer to the question is "False." Students have to provide documentation in order to receive accommodations for their classes.

This is a quiz about disability law in higher education. The answer to the question is “False.” Students have to provide documentation in order to receive accommodations for their classes. Very informative!

Each station had braille placards to visitors with vision problems can benefit from the exhibit too! There was also the option of borrowing headphones for a provided guided listening tour of the exhibit. Inclusiveness!

Beautiful banners outlining the major milestones of the disability movement and some interesting statistics about people with disabilities

Beautiful banners outlining the major milestones of the disability movement and some interesting statistics about people with disabilities

The exhibit was located in the center hub of student activity on campus. Lots of students wandered by the exhibit, having no idea what it was. A pleasant surprise!

Posters showing actions leading up to the signing of the Americans with Disabilities Act in 1990. Access is a civil right!

Posters showing actions leading up to the signing of the Americans with Disabilities Act (ADA) in 1990. Access is a civil right!

Before the ADA was signed, people who use wheelchairs were turned away from restaurants and busses for being “fire hazards” or eyesores. They lacked basic rights. There were several posters documenting the injustice experienced.

At the end of the exhibit, visitors were encouraged to sign a pledge to be an ally. Here I am holding the board at the end of the exhibit's run. So many allies!

At the end of the exhibit, visitors were encouraged to sign a pledge to be an ally. Here I am holding the board at the end of the exhibit’s run. So many allies!

Facilitating this exhibit was an awesome experience. I met so many people and listened to countless stories about all types of disabilities. Because Lyme bars me from participating in so many of life’s activities, I identify as a person with a disability. My school has a profound lack of disability culture. I felt absolutely refreshed after spending my week here. I felt that I was able to help raise peoples’ consciousness and advocate for other people with disabilities.  This was just one small step in the journey towards equal treatment of the disability community. The activist in me is pleased.

Social Justice!

Best,

Sofia