Getting to Know You
- Your name:
- What’s your connection with disability?
My connection with disability began at birth, with Osteogenesis Imperfecta (O.I.). Then as I grew older I began reaching out to others who also have O.I. and started a blog called Perfectly Imperfecta from 2011 – 2013.
I recognized that there were lots of blogs from parents of children with O.I. who used blogging as a way to update others & track their kids development, and also bloggers who were young teens with O.I. who used it to vent their frustrations that come with being disabled. So I began Perfectly Imperfecta as a way to write from the perspective of a 20-something adult who could be reflective about my own childhood and adolescent experiences of having O.I.
My entries ranged from those having to do with family (and being the only representative of disability in my family), to entries on advocating for myself in a school system, and social experiences like being out in a club with my friends. From that personal blog I began to become more interested in the larger disability community — and for that I have my professional experiences at Easter Seals Massachusetts to thank!
Around 2012 I became the Thrive Program Coordinator and worked on developing and implementing a mentoring program for transitional-age disabled young women across the state of Massachusetts. This was an incredible professional experience both in learning how to run a youth program, and put together an invigorating conference as well – but it was also a fast-tracked course in learning about working within the disability community.
The Thrive Program conference gave me a platform to learn and work with young women around things like: access to birth control, sexual health, access to preventative healthcare, body-image and fashion, and just learning how other successful disabled women have been able to lead kick-ass lives while pushing this disability rights movement forward! Since then I am now working on some personal projects like this summit I’m convening around disability and intersectionality which I’m so ecstatic about, but I’ll leave the rest as a surprise…. until my next update!
- Star Trek or Star Wars?
Star Trek!! There is a picture of me peddling my tricycle-spaceship around and around the house, and every time I got in trouble (which was often..) I’d press the button on my “spaceship” and try to get out of my mishaps with “Beam me up Scotty!”
- If you could live in any other country for 2 years, where would you go?
Hmmm… Australia. Among lots of other reasons including all the awesome people I’ve met in my virtual-networking who are Australians that I’d like to meet.. they have a place called The Great Sandy Desert. I mean c’mon now, as someone who has a collection of sand samples from all around the world — how could I not?!
- What dish would your bring to our community picnic potluck?
Ice cream and ice cream sundae toppings! My love for ice cream is insatiable.
Now That We’ve Been Introduced…
- What do you do:
So as I’ve mentioned earlier, I’m currently working on putting together a Disability & Intersectionality Summit that’s being spearheaded by the Disability Policy Consortium. The need for this event sprang on me when I realized there was a lack of diverse representation when we talk about disability policies, and disability civil rights.
There isn’t enough dialogue that utilizes and reaches out to those of us in the community who are people of color, or are LGBTQ, or have invisible disabilities, and mental illness. As someone who is able to look at the disability community and the organizations that work within it, I see that there’s a ton of talk about collaborating and pushing a movement together – but usually that’s all I see, talk.
I don’t actually hear the talk, or see people being brought together and my attention with this summit is for us to learn from each other because we forget that while we’re so busy trying to change the perceptions of mainstream society and those stereotypes – we can’t really be successful at that until we’ve listened to what our own members are saying, and recognize what the need is before we go charging off to lead the battle!
Also, this past November I began writing a novel that features a protagonist who is a wheelchair-user. Her story is as much her own, my own, and her narrative has many of the same traits to it as those of the other disabled women I have had the honor of listening to. But that’s really all I can say about the story for now!
- How did you come to doing what you do? How has your career trajectory flowed?
I certainly didn’t come to do what I do with open arms and the same enthusiasm that I have now, that’s for sure! I grew-up believing that I could pass for being able-bodied in my mind. I wanted nothing more than to blend in, be like everyone else, and took an attitude of: “I’ll deal with my disability as I go whenever it’s a problem.”
I relied on my academics, my personality, and this inherent belief that I was the one who would always have to accommodate and adapt to everything else.
If you had asked me even 5-7 years ago whether or not I would have seen myself doing AmeriCorps and working with community college students, then working with disabled women, being able to speak at the White House for the 25th Anniversary of the ADA, creating a website for women internationally to submit letters, or becoming more involved in the disability rights community in my spare time – I would have laughed. Because it wasn’t until 3 years ago that I actually became involved, and stopped actively trying to “pass” as able-bodied, and started to actively live as I am.
It’s been a learning process for sure, and there are lots of days when I have no clue what I’m doing but I would say that my career trajectory has primarily been led by these three questions:
A.) Am I building new skills, and pushing the ones I already have?
B.) Am I having a positive impact on a community, or group of people?
C.) Am I still able to see the end goal as I’m working? Or is the work that I’m doing just adding to the noise?
I was never someone who went to school, got my degrees, and said “ok, now I’m going to be This Professional Licensed Person for the rest of my life.” My career trajectory is more skill-building based, and of course driven a lot by my own curiosity and passions.
- Where would you like to see yourself in 5 years?
In 5 years? I would like to still be working with communities of people whether they’re communities of immigrants, disabled people, or disabled youth. I want to translate the community work that I have been given the privilege of doing, and deliver it to that next level of creating policies.
Will that happen in 5 years? I’m not sure! But I’m gonna try like hell to make it happen! I also see myself in Washington D.C. within five years. Because, it’s D.C.
- Not to be morbid, but what do you want people to remember about you when you’ve gone?
I hope that people would remember me as someone who was enthusiastic, genuine, and curious – oh, and loved ice cream.
- Who or what inspires you?
Harilyn Rousso; her memoir Don’t Call Me Inspirational: A Disabled Feminist Talks Back had a tremendous impact on my work with the mentoring program, but also in shaping the ideas I have about being a disabled woman. Also, my two brothers who I might not always understand but I have come to find sibling rivalry is such a loving force.
- 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?
Geez I’d already written and submitted my letter to my younger self as a freshman in high school… but I’d say to myself let your curiosity get the better of your fears. And don’t be afraid to own up to not knowing something in a position of leadership. It actually has the opposite effect you are worried about having, and will allow you to have trust and access in ways that will make you a better leader.
- What do you like about your particular disability?
As a predominant wheelchair-user I can talk myself into buying shoes by saying “it’s a great investment because they’ll last me for the rest of my life…”
- Any one thing that you wish people would *get* about disability?
- What single piece of technology makes your life easier?
My power wheelchair Permobil C300, but also by that same measure my TiLite Aero Z because I’m able to hop in to my friends’ cars and homes that may not be accessible with an electric wheelchair. Also my Macbook Air, yea I’m a mac person I said it.
- Where else can we find you online?
Letterstothrive.tumblr.com (- Letters written by women with disabilities to their younger selves)
Perfectlyimperfecta.blogspot.com (- blog)