Can you describe some of the work that you do?
Sure….In a nutshell: I run workshops on beauty and self-esteem, because I believe it is an essential human right to recognize our gifts and beauty. As a teacher, blogger, and speaker, I’m a storyteller whose stories ideally serve as a reflection of others and the audience. But my lived experience as a work in progress and any residual “wisdom,” allows me to wear many different hats. The week I met you speaking at Barnard for the Women Action and the Media Conference, I also spoke at the Williamstown Theater Festival at Williams College, representing a group called Diversability at a Tech Conference. I was also a willing guinea pig and judge for a project last year called the Connect Ability Challenge with AT&T. This project served as a launching point for the development of assistive tech. I love that the work is so varied because I always learn something new. I see my work as serving and connecting to people, lifting us up, sharing things I believe in, and helping others to see beauty and humanity more clearly both individually and universally.
How did you become involved in positivity activism?
Although it might sound like a hokey term, positivity activism is about awareness and empowerment. Growing up people always told me I was positive because I smiled and laughed a lot, although it was not something I was conscious of. While I may have been ridiculously positive and confident as a child, in my teens and early 20s I was still seen as positive outwardly, but had no clue why people saw me that way: inside I was a ball of insecurities – not as a person with disabilities – oddly – but just as a girl becoming woman, as someone with a people pleasing problem. I was someone who was deeply afraid of rejection. Positivity activism for me is not about being happy all the time, or never feeling upset or angry, it’s about the conscious, even defiant choice to find the light in dark situations and times; about not letting a negative situation or person take your power, or pull you under. It’s about trusting that no matter what life looks like now, your lowest point is not forever and can catapult you to your highest. It’s about moving forward anyway; making a choice to see the best and brightest in situations and people and not letting a current bad situation sour what you can do from now on, and what’s waiting for you in the future. This is also how we can work to conquer self-esteem issues. No matter what voice inside tells us we are not enough, no matter what other people may say, we are beautiful as is. We can grow, change, and become better. We can make an active choice to shift our focus to possibilities rather than disappointments. Rejection, tragedy and injustice, are all vital experiences that can empower us to be greater, kinder, and more aware of who we want to be. Rejection, tragedy and injustice can be our stepping stool to the next level of who we become individually and culturally.
How do you think your work in positivity activism intersects (or is similar to) your work in disability activism?
I think for me my positivity activist mindset has helped me never to focus on or languish in what’s not right about disability issues or issues in general, but motivates me to be part of the solution and work to champion change. It gives me courage to tell my story (I always had debilitating stage fright before I realized I had a really good reason to take the stage – one that was not about me at all) in hopes that it will empower someone else to do the same. It allows me to think of the ski poles that I walk with as part of the wings that make me soar! Positivity activism is a lens through which I own the beauty of my story and hear others stories.
As a person with cerebral palsy, I’m frequently told microaggressions. How do you go about navigating statements like these?
I always view these misunderstandings and misconceptions as an opportunity to change perspectives and flip the original narrative. Either by asking a question in a non-accusatory or non-judgmental way like: “Interesting. What does disability look like to you?” However they answer, you have the power to flip those expectations or perceptions with your response. You have already broken their mold of what disability is to that person, by being smarter or looking different in their estimation, so you are already breaking stereotypes. I love surprising and confusing people, it helps to illuminate new awareness or change mindsets. I also have the right to ignore what was said or how something is framed, and use it as an opportunity to make my own statement.
One day I walked into a store and a very stressed woman looked at me angrily and said “What’s wrong with you???” I had answered nicer versions of this question before, so without thinking I said what I usually say, “I have Cerebral Palsy and it’s the blessing of my life. Thank you very much for asking.” I smiled genuinely and turned to walk away. She suddenly burst into tears and apologized. She then told me she just been laid off and had just had the worst day. We talked for a long time, hugged, and ended up becoming Facebook friends. If I had responded aggressively back, I’m pretty sure that things could have been very different. I have enough confidence in my disability not to let others change what is true for me. We control our own narrative whether people get it or not. Our presence alone is an education. But we cannot assume people can read our minds, or that they must all instinctively know how to treat us. We set that standard.
Additionally, how do we make people more aware about the wide-range of disabilities?
First, I think we must encourage people of all disabilities to share their lives and stories – on a stage, in a blog, on Youtube, in film, even in a personal journal. Then, where possible, share these things with others. For example, the ongoing ReelAbilities Film Festival showcases a variety of disabilities and perspectives in the films selected, and could be great place to start. They have screenings all over the country now.
I’m really interested in the concept of “self-care.” How does the ideology relate to your experience with disability?
It is central to my evolution as person with a disability. I didn’t realize until I was about 25, that because I never saw my disability as an issue, I had essentially ignored my body completely. I was a hippie in some ways, so I dressed kinda sloppy and my hair was always in knots. I hated my feet too. When I started running workshops on beauty and self-esteem, I knew I had to walk the talk. I started getting pedicures just for me (to show my feet some love). I got rid of my jeans and shoes full of holes (I drag my left foot, so after a month or two of wear, there was always a new hole popping up)! I got my hair done more often. I can honestly say I like my feet now – progress – and that self-care gave way to self-acceptance and celebration. I still think I have a long way to go and I’m very honest with my students about that.
As an aspiring writer, I’m interested in the importance of complicating traditional narratives. When I see a disabled person in the media, which is a rare occurrence, they are often involved in a narrative in which they gladly “overcome” their disability, or they achieve superhuman achievements regardless of the hurdles that their disability presents. How do you think we can challenge these harmful narratives?
I personally don’t think there’s anything harmful in being superhuman in overcoming something (especially a negative or damaging mindset), but I do think patronizing narratives where a person is almost like a puppy, or anything “Us vs. Them” has to go! We all want the same things: to be loved, a voice that is heard (even if we cannot speak), and a purpose. So, one way is to create more honest narratives from direct sources, to connect the audience to the universal as we celebrate difference. We can educate people who intend on being allies as to why certain things may be problematic for true portrayal. We can speak up and have conversations rather than diatribes.
Venting makes us feel better, but it may not help others to receive the message. I think it’s more beneficial to engage with people and hope the message ushers in awareness or change.
What do you see as an alternative to this? (I’d love to see more movies, music, blogs, art produced by disabled folks).
I’d love to see that too and it’s one of the reasons I joined the ReelAbilities Film Festival Film Selection Committee for the first time this year. I wanted to learn more about what’s out there about people with disabilities; and by far, I find documentaries the most powerful space where I can learn the most firsthand, about disabilities other than my own. And the fact there have been a record number of submissions in the last year, means more narratives are being created and shared worldwide. That is a beautiful sign that we are headed in the right direction!
How do we disrupt the one-dimensional narratives that are prevalent in our own community, specifically those relating to race, class, and gender?
In adding dimension, I think focusing on the universal and simply by displaying more fully who we are, our values, and why we love what we love, our beliefs, dimensions will develop and shine; it’s easy to focus on one note, or make snap judgments, but if we dig deeper: share family life, our favorite music, books, sports, authors, philosophers, or details of our spiritual life or personal struggles, we are not defined by cultural labels, but become, and are portrayed as our more authentic selves, more vivid, and more like Hyperspace (many, many, more dimensions and galaxies within one)!
Can you describe some of the work that you do?