Getting to Know You
- Your name:
- What’s your connection with disability?
I have had physical disabilities all of my life, since birth. I have Arthrogryposis.
- Star Trek or Star Wars?
Star Trek. I like all of the series, but the Original Series is my current favorite. Star Wars is fine, and of course I loved it when the original trilogy first came out, but the whole idea of the Jedi bothers me … a small number of people born with inherited elite abilities who therefore have the moral authority to rule and dispense justice. Kind of like aristocracy, but with some weird Sci-Fi / biological justification. Yes, I’m a nerd and yes, I overthink things.
- If you could live in any other country for 2 years, where would you go?
- What dish would your bring to our community picnic potluck?
Now That We’ve Been Introduced…
- What do you do:
I am a disability blogger and podcaster. I also tutor community college students in writing.
- How did you come to doing what you do? How has your career trajectory flowed?
Right through high school and college, I told everyone that I didn’t want to work in the disability field or join any sort of disability group. I felt that way partly because I didn’t know that anything like Disability Culture or a Disability Rights Movement even existed. It would probably be more accurate to say that I had been told about these things from time to time, but it went in one of my adolescent ears and out the other.
Then, during my senior year in college, I heard about the Deaf President Now movement at Gallaudet University, and soon after learned about consumer-directed, activist oriented Centers for Independent Living. It revolutionized how I viewed disability. After graduate school, I started working at my local CIL. I worked there for 23 years. For the last 13 I was the Executive Director. I left that position because I was exhausted, both physically and mentally, and because I wanted to explore other aspects of disability culture, mainly through blogging and social media.
- Where would you like to see yourself in 5 years?
Teaching English 101 part time at my local community college, plus blogging, and podcasting. Another possibility is overseeing some kind of network of disability blogs and / or podcasts.
- Not to be morbid, but what do you want people to remember about you when you’ve gone?
I want people to know that I enjoyed my life.
- Who or what inspires you?
The online disability community inspires me, particularly its advocacy, diversity, and confidence.
- If you could say something to yourself in the past -that is, the you that was really struggling with something related to disability – what would you say?
You don’t have to look away from your disability and shun other disabled people in order to be a happy and interesting person. There are ways of consciously being a disabled person that are exciting and fun.
- What do you like about your particular disability?
This is a difficult question to answer, but to be completely honest, I like that my disability doesn’t affect my intellect. I like that it hasn’t prevented me from being able to explore and understand life deeply and intellectually. I am grateful that for the most part, I have always understood what is happening to me at any given moment, and I have rarely felt profoundly disoriented.
- Any one thing that you wish people would *get* about disability?
I wish more people would *get* that there are many valid ways to view disability. I’m not just talking about the obvious fact that everyone’s experiences and thoughts are unique. I’m saying that you don’t have to choose between a strictly-defined Medical Model or a strictly defined Social Model. Being strong and clear about these things is important because it helps people make sense of disability, but as descriptions of actual experience, all models are at best only partially effective. Having a positive view of one’s disability doesn’t mean you never wish you weren’t disabled, and working hard fix some aspect of your disability and fit in doesn’t mean you hate your disability or yourself. We can vary our thinking. We can blend ideas. This is as important for disabled people to *get* as it is for non-disabled people.
- What single piece of technology makes your life easier?
My ventilator, which helps me breathe at night, and has done for the last 30 years, keeps me alive. Convenience-wise, I would have to say my computer, which is vital to my blogging, tutoring, entertainment, and organizing my life so I can use my limited physical stamina as efficiently as possible.
5. Where else can we find you online?