I also consider myself to be an activist for the Spina Bifida cause. In my spare time (what is “spare,” anyway, if we choose to DO something with it?) I sit on the board of the Spina Bifida Association of Central Florida, and I’m an active member of the National Association of Hispanic Journalists, and of Latinos in Social Media. I write about health on the LATISM blog: http://blog.latism.org.
Degrees You Hold :: College/University Name: B.A., Interdisciplinary Studies :: University of Central Florida
Country of Origin or Family Heritage: I was born in San Juan, Puerto Rico, and my parents and I (I’m an only child) moved to Orlando, Florida when I was 3. They figured I would have better medical and educational opportunities in the U.S.
What city do you live in? What do you love about it?
I consider myself a nearly-native O-Towner, but my heart lies in New York City (even though I’ve only visited there!). What I do love about Orlando is the general quality of life, and how at times it can feel like a city and other times like the countryside. But I get restless quite easily! I am passionate about giving back to my local community, though, and I’ve been a recipient of many blessings in this great city.
Professional/Social Achievements: Currently, I’m working on my two babies (my Websites!), and my ideal would be to start earning an income from what I love to do, so I don’t have to split my time working at a job that won’t be as satisfying.
I’m currently working on several projects with Latinos in Social Media, including helping launch a chapter in Central Florida.
In the meantime, I’ve greatly enjoyed learning in the unorthodox way that I’ve been self-educating since I graduated college. Back then, I would never have dreamed that indeed, the best classroom has been at my fingertips all along! I’ve connected with so many people and even gotten a response from several notable people who are interested in my work for the Spina Bifida cause. These include recording artist Spencer Day, journalists Bill Hemmer, Soledad O’Brien, and Judy Woodruff, and even celebrity Chef Gordon Ramsay. It’s been quite a ride, and these are experiences that you just can’t get on a full-time class schedule!
Who Has Inspired You to Be Your Best?: : First and foremost, GOD. Without Him, I know I am nothing. And he gave me two wonderful parents who inspire me and push me to be my best every single day. I am not perfect by any measure, but the people I surround myself with are a constant encouragement, and they make feel sane even in the midst of chaos!
When I was younger, I was constantly in the hospital, particularly due to bladder problems and because of hydrocephalus (“water on the brain”) which is common among people with Spina Bifida. My parents would never leave my side, and whenever I am in good health, they never fail to provide me with priceless opportunities to travel, meet people, and enjoy this journey called life.
Like any other Latina, FAMILY is paramount. Being an only child, I grew up having a strong bond with my first cousins. When you have a condition like Spina Bifida, I can’t stress enough how important it is to have peers who will treat you like anyone else– you know, beat you up, make fun of you, and get you in all kinds of trouble!
25 Million Latinas and Counting! Your thoughts?…: ¡WEPA! I’m so proud to be a part of the fastest-growing demographic. It wasn’t really until I found out about LATISM that I really began to feel connected to my roots. But I’ve always been a Latina at heart. I love the food, the music is great, and oddly enough, I managed to set the bar high for myself in terms of keeping Spanish in our home.
As many of my hermanas have taught me recently, it’s not your exterior but what’s adentro en tu corazón that counts! That’s what makes you a true LATINA. I didn’t find my Latin-ism until my early 20’s, and that’s okay.
Countries You Have Visited and Your Favorite One: Puerto Rico (depending on whether you see it as a commonwealth of the U.S. or its own nation!). My Mami and I visit at least once a year, if not more often.
I visited a few countries in Europe in 2001: England, France, Holland and Belgium. It’s a tough call, because they’re all so markedly different. I’d say for me, it’s a tie between France and Belgium. I’ve always been in love with the French language, and the people in France were patient and lovely.
But I was highly impressed by Belgium. From a young age, they will teach their kids at least 5 or 6 languages! You’ll hear no “You’re in Belgium, speak French/Dutch/Flemish!” over there. They’re really very good at adapting to people of different cultures. It was a great lesson for one who lives in an unapologetically monolinguistic environment.
Describe a Perfect Day Off From Work: Lounging around at a Barnes & Noble with a latte in one hand, a good joke book or biography in the other. Watching a chick flick with Mami, or a drama with Papi. NOT going shoe shopping!
Relaxing in the evening with a glass of sangria and dancing to ’80s tunes that came just before my time.
Or…promoting the Spina Bifida cause. (Hey, activism doesn’t take a day off!)
What Has Been Your Biggest Challenge in Life?: JUDGMENTS. By this I mean, we’re ALL being judged, ALL THE TIME. It kills me on the inside. Everyone wants to categorize me as “disabled,” and I don’t believe in that word. “Disabled” is for broken-down vehicles on the shoulder of the road, not for PEOPLE. That being said, if we spent less time “categorizing” people with physical or developmental challenges and more time REALLY thinking about their needs, there wouldn’t be the abject marginalization I constantly see today. Whatever happened to “equal under the eyes of God”?
My hope is to show people that I’m able and empowered!
What is Your Next Big Dream?: I have several. Some overlap each other! As far as my cause is concerned, I’d like to found an organization to promote public awareness of Spina Bifida. I think we need to focus more on people living with Spina Bifida (like the 166,000 living in the U.S.!) rather than exclusively on prevention of Spina Bifida. Many great organizations and initiatives are promoting prevention of Spina Bifida using folic acid, but there are many people with SB who are languishing on the sidelines because they lack the resources and interventions needed to live fully productive lives.
One of my biggest concerns is major depressive disorder. Many medical studies have shown that people with Spina Bifida have a predisposition to depression, but there is very little being done to make families aware of this, let alone address the catalyst– social isolation. My goal is to help serve as a bridge between the medical community and the Spina Bifida community, as well as for the public, so as to begin an open, frank discussion about the problem of depression in adults with SB. Only when we fully recognize the real silent “disability” will we be moving towards helping people with SB become self-sufficient, contributing members of society.
Another big goal for me is to eventually go back to school to get my Master’s. I don’t know when or where this will happen, or what program I will pursue, but surprisingly, I do miss being in school and having a structured learning environment. Right now, though, I’m finding some semblance of that structure by attending blogging, social media and journalism conferences. These have been a great way for me to learn at classroom-like workshops from seasoned professionals, and have served as invaluable opportunities for networking and making friends– without the added pressure of monitoring my GPA. ;)
And my last really big dream is to live in Manhattan someday, and to make sure my family members never have to work another day in their lives. :)