Sesame Street fans, you might remember Emily as Big Bird’s cute little 10-year-old, enthusiastic friend, “Emily Rosen.” In her standout 2002 role, Emily was open and honest about disability – a subject often not openly addressed with children. This experience helped launch Emily’s lifelong passion for disability advocacy. This talented blogger of Words I Wheel By now volunteers with multiple organizations to help foster opportunities and develop resources within the disabled community.
AXIS: Tell us a little bit about yourself and your disability?
Emily: I was born with a genetic physical disability called Larsen syndrome which affects my joints and muscles. My mom and her younger brother also have it. I've used a wheelchair to get around since 3rd grade, and I quite like life on wheels. It keeps things interesting.
Can you tell us about your experience on Sesame Street as a child?
Sesame Street was the place where my advocacy really began, and it happened rather unexpectedly. I used to go to a summer camp for disabled kids, Southampton Fresh Air Home, and when I was 9 years old, a talent agent from the show called my camp looking for suggestions for kids who could audition. I had a knack for being bubbly (read: loud and noticeable), so the camp directors recommended me. Two auditions later, I landed on the show. My role was essentially to play myself, just with a different mom and a different last name. I got to educate kids about my disability, so in a way, I was the token disabled character, but seeing what I could do with my voice as an advocate was a powerful lesson to learn at such a young age. It stays with me always.
What are your thoughts on expressing yourself and why is it so important?
Self-expression in any form is how we thrive as human beings. For me, it is writing and speaking; for others, it may be dance or painting. Whatever it is that you value as a means of expressing yourself - keep doing it and never stop. Anyone can share a message, but if there's nothing about it that resonates with anyone, or most importantly, that resonates within you, you risk being stagnant. When a message is expressed in a way that's meaningful and personal, that's when the real fire of change is lit.
But self-expression doesn't always need to be for some kind of cause or greater-good, either. At times, I write just to write, to let out whatever I'm thinking or feeling, even when I know it will never go from the private to the public page. Self-expression can be a form of self-care, and taking care of ourselves isn't something any of us do nearly enough.
What are some of the things you hope to achieve as an activist?
My ultimate goal is to make the disability experience accessible to non-disabled people. I know what you're thinking: don't we want non-disabled people to make the world accessible for us, the disabled people? Absolutely, yes. But that won't happen if disability is taboo or mysterious. Disability rights are the civil rights and human rights that get continually sidelined, and I think it's largely because for so many, disability is a frightening unknown. I'm most certainly not saying that's the fault of the disability community. What I mean is that as an activist, I aim to get people to think through the language they use and the language they encounter in everyday conversations and the media regarding disability. How are we conveying our experiences? How are non-disabled people talking about disability? How can we meet in the middle?
I hope, in the humblest possible way, that making the disability experience accessible and ceaselessly working towards acceptance and understanding will be the legacy I someday leave in this world.
What inspires you?
People who manage to find a balance between doing things for themselves and others are the ones who inspire me. Giving back and advocating for communities while never forgetting who you are and what you need is a challenge, but I know so many people who manage it with grace and poise.
I also find inspiration in so much of what I read each day. Words are a powerful thing and they're what keeps me going.
What is your favorite dessert and why?
This is a fun question! My favorite dessert, unquestionably, is my mom's made-from-scratch brownies. She's basically famous for them and we rarely go to food-related events at other people's houses without bringing a batch. There's something comfortable and nostalgic about eating them, not to mention that they're ridiculously decadent and delicious.