The “Voices from the Disability Community” series, in which people with disabilities share different slices of their lives. A space for people to hopefully connect over shared voices, experiences or disabilities.
Please welcome Kari Lynn Pope
Getting to Know You
- Your name: Kari Lynn Pope, but that’s about to change because I’m getting married on November 21 this year!
- What’s your connection with disability? I am a disabled person. I have cerebral palsy. As such, before I started my current job, I was an advocate for several years for the Arts and Disability Network through the National Arts and Disability Center at UCLA. I do my best to continue disability advocacy through my freelance writing, most specifically and most recently in the community blogging project Disability Right Now: https://disabilityrightnow.wordpress.com
- Star Trek or Star Wars? Both. I’m not much for fandom in general, and not a sci-fi geek like lots of my friends are, but I’ve always liked the original Star Wars trilogy, and I was a huge Star Trek: TNG fan while I was growing up.
- If you could live in any other country for 2 years, where would you go? Well, I did live in Germany from 2008-2010, in my current life as an ESL teacher. I’ve also lived in Ireland and Turkey, and had a chance to visit several other countries. In the U.S., though, I’ve always called California home, so I think if I had to choose two years in a new place, I’d pick a different state here. Maybe Mississippi, where my fiancé is from, or New York, where my sister lives.
- What dish would your bring to our community picnic potluck? Anything you asked for (within reason.)
Now That We’ve Been Introduced…
- What do you do: I teach English as a Second Language now.
- How did you come to doing what you do? How has your career trajectory flowed? It was a tough decision for me to leave full-time disability community work. I think the fact that I’d started when I was really young (22) had something to do with it; I felt (and still sometimes feel) that I owe something to the community, to the movement. I was also always very conscious of my position on the “disability food chain” as a person with mild CP.
Having come to advocacy work through disability studies and through theater and integrated dance, I didn’t meet many other folks who were like me, at least not in obvious ways. After I’d started working in the community, I got to feeling like some people thought my disability was a joke I was playing on them, like, “Yes, I have CP. But no, I don’t use a wheelchair, or any mobility aids, in fact. I walk. I talk. I don’t even drool (much.) Really.”
Some people’s idea of encouragement was that I “keep passing,” which I can do when I’m sitting down. But I thought, “I don’t want to play ‘Now you see it, now you don’t’ for the rest of my life.” It’s kind of scary when you have to try to get people to trust you even when they know you don’t have the same kind of access needs that they have, or need the same kind of services and supports that they do, for all that you carry the same basic identity label in the world at large.
It got to be very confusing and overwhelming for me, so I decided to pursue other things I’d dreamed about, like traveling and learning other languages. As I’ve done that, my writing, especially through the Disability Right Now blog, has helped me stay connected, as well as explore in an inclusive way some disability issues that are (emotionally) close to home for me.
- Where would you like to see yourself in 5 years? As I said, I’m getting married soon, and my fiancé and I are
very excited about starting our family! So, best case scenario, I’ll be mama to a kid or two (or even three, if I still have time enough!)
- Not to be morbid, but what do you want people to remember about you when you’ve gone? Having lost a lot of people close to me throughout my own life, I’ve given this a lot of thought–not that I want to be morbid, either. But a few years ago, I decided I will be content if in my eulogy someone remembers that, “Kari found the ordinary extraordinary, and by her presence, made it so.”
- Who or what inspires you? Inspiration: I take a lot of inspiration from many colleagues, students, family and friends–but especially from my fiancé, who has transformed his whole life through his recovery from alcoholism. My faith also inspires me a lot. It’s most of what I blog about these days, here: http://writingthetao.blogspot.com and here: http://thepopeofpop.blogspot.com
- 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? This is a tough one. I’m not sure I have anything original to say! After thinking about it, I’ve realized that the #ItGetsBetter campaign in the gay community a few years ago made a big impact on me.
I was bullied really badly in school and the social stigma of having a disability hit me hard, because I have a non-disabled identical twin who is a dancer! So people were always comparing us, most insidiously within our own family. I can’t say I grew up with any sense of self-worth at all.
On a writing assignment one time I interviewed my friend and elder advocate Anthony Tusler, who said that he thinks people in the gay community have done a much better job than we have in the disability community of addressing issues of self-loathing. From what little I know, I would tend to agree based on how difficult it can be to create a safe and inclusive cross-disability forum. There’s a lot of in-fighting that goes on, even among people who start with the best of intentions.
And my experience as a disabled adult in more integrated settings is that bullying isn’t always something that people outgrow; it can become a kind of subtle, passive-aggressive ostracism. I experienced that time and again in my twenties, especially while I was traveling.
So if anybody had told me ten, or even five, years ago that today I would be in a “day job” I enjoy with meaningful artistic and activist opportunities still open to me, all while I’m about to marry a man I’m head over heels in love with, I wouldn’t have believed it. It all just makes me want to grab my teenage self in a bear hug and say, “See? It does get better. It really does!”
- What do you like about your particular disability? My physique! Seriously. High muscle tone is the best thing that could have happened to this palsy lady!
- Any one thing that you wish people would *get* about disability? That it’s not always about how disability looks. This is not just with respect to visible vs. invisible disabilities. I can’t tell you the number of times my startle reflex has been activated needlessly by non-disabled folks who want to “help” me. My PSA to all of them is, “Just because something
I’m doing looks difficult to you, doesn’t mean it’s difficult for me to do. I’ll do what I need to do the way I know how, and if I need input along the way, I’ll ask for it.” Nobody knows my body, or my disability, better than I do.
- What single piece of technology makes your life easier? This is going to sound corny as Hell, but–Facebook! I use it to keep in touch with people from all aspects and times of my life. It’s the most meaningful platform I have right now for my intermittent blogging as well as for speaking up about issues that are important to me. I’ve even used it to facilitate my wedding planning! Lately I’ve been trying to focus on using it in a more accessible, more inclusive way. My latest project as far as that goes is captioning/describing the photos, links, and other visual content I post. Thereby I hope I can better assist others in using the same technology I enjoy so much and find so useful myself!
- Where else can we find you online?
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.