(Note: I wish I could type just a little faster .. this is my best effort to capture what she said, but it’s by no means ALL of what she said. Find the video when it gets put up; you won’t be sorry.)
From Injury to Advocacy
In 2005 I was first introduced to U2FP in Washington DC. What they do here is try to keep our community together.
When I was 5 yrs old, I already knew I wanted to do something important in the world. At the time I thought that meant becoming a social worker.
In August of 1992 I was an independent carefree, 14 yr old. I was a B student who loved to talk and schmooze too much. I was on my high school swim team, looking forward to things like dating. A friend died that summer, which seemed so wrong and unfair; little did I know it would soon be my turn to experience “unfair.” On Halloween night I spent the day with my best friend, Karen. Our plan was to meet some friends that night and go with them to downtown Miami. At 9:30 pm, in cutoff jeans and a white tank top, I kissed my mom goodbye and ran with Karen to meet up with four others, three guys and one other girl. Then we stopped at one of the guys’ houses to get another car., because he thought he might want to leave early. So there two cars, each with three people in them. I was alone in the back seat of a BMW, not wearing a seatbelt. Right away, these guys started drag-racing on a 30mph curvy street. The one I was in got hit at 90 mph.
I was a c3 quadriplegic, pulled out of the car because people thought it would explode. All the other kids walked away. I had surgery. I spent a month in ICU and then 2 more months in rehab. The first day they put me into a sip n puff chair and I slammed my poor mother into a wall. As I entered rehab the first thing I saw was some others in wheelchairs. i started to cry and wanted nothing but to go back to my room.
At home, I had to live downstairs. I went back to school, where I ate lunch in a private accessible bathroom so my nurse could feed me without anyone seeing. I spent hours every day in therapy and then doing homework. That was my life.
I never, ever gave up. The hope of walking one day never went away. i was asked to speak to a group of seniors about reckless driving, which I didn’t want to do. I did it anyway. At graduation I was called first and positioned front and center so that all the students had to climb over me … there were more than 600 students so it took a long time. I thought, sitting there, that if I’d given up these people would all still be here. Life would go on, with or without me.
At the University of Miami I got a driver’s license, made new friends, joined a sorority, and had a social life … back in those days, no Siri, no Alexa. I graduated with a double major in advertising and psychology, and after another degree in copywriting I was finally done with school. I was terrified to go on a job interview. Who would hire me? What if I dropped something? What if I needed help in a bathroom?
I made it to one or two interviews before giving up on that .. I decided to start my own company. After a couple of years of that I met a man named Bernie Siegal, who was head of the Genetic Policy Institute. I closed my business and took a job with them.
That led to deep involvement with the stem cell research movement, where I became a fierce advocate, with many, many public appearances.
I became convinced in those years that I needed to get strong, and it was during that period of intensive exercise that I fell and injured my foot, which led to hospital stays and pneumonia.
So that was in 2012, and I was very sick. I wanted to figure out what I could do to make sure I never got sick again. What I did is go to the beach. I wanted to go to the beach, actually. I couldn’t go there, because my chair and the sand were a bad combination. I thought that while science makes advances, I could focus on something else — a way to bring health and wellness to people with SCI. An adaptive playground. It’s fair to say that I now have a master’s degree in politics. Access may be a no-brainer to most people, but the idea of having disabled people in their backyards was NOT welcome to some of the citizens of my city.
In 2014, my idea for an accessible beach was chosen out of 400 applicants. With help from the Neilsen Foundation and the Christopher and Dana Reeve Foundation, we’ve served more than 2000 people. In two weeks we’ll be opening the first adapted beach playground so that all kids will be able to play near the ocean.
And we’re going to open the first fully accessible recreation center in the state of Florida.
30,000 people have heard me.
I’m a professional life coach.
I have a real estate license where I focus on universal accessibility.
I’m about to go and speak to thousands of real estate agents about why this matters.
Earlier this year I tried IVF .. which didn’t take, but I’m not giving up.
We’re all capable of adapting to whatever life gives. Be kind, caring, and understanding. Try not to take things for granted. Surround yourself with positive people. Less talk, more teamwork. Stay fierce and committed to what you love. My heart remains open to the possibility that one day, soon ….
Quotes Steve Jobs: No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because death is very likely the single best invention of life. It is life’s change agent. It clears out the old to make way for the new. Right now the new is you, but someday not too long from now, you will gradually become the old and be cleared away. Sorry to be so dramatic, but it is quite true.
Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become.
Personally offers heartfelt thanks to an amazing list of people and organizations who have been there for her and for us. Brilliant woman, in the sense that she brings light.