Lives In: Prospect Heights, IL (NW Suburbs of Chicago)
Current Job: Executive Director of BACKBONES, a nonprofit providing support for people with spinal cord injury.
My ultimate dream is to live in a world of understanding and equality (you know, with bunnies and rainbows!). I want there to be equal access to education, employment, recreation, and housing for people with disabilities…and I will work hard for that to happen. Once it does, my dream will involve a small house in Costa Rica or Mexico where I can design and create art when I’m not doing yoga.
What are you doing to attain your dream?
As director of BACKBONES I have been able to merge my skills in art, fashion, and theater with awareness, empowerment, and education. At one point I wanted to be an event planner with one of my good friends who is a florist. As cofounder of BACKBONES, her and I have been able to host some fantastic events for the Spinal Cord Injury (SCI) Community such as a fashion show featuring models in wheelchairs, a scavenger hunt where participants must complete tasks using a wheelchair if they are non-wheelchair users, a 5K with extra-hand cycles available for able-bodied individual to try, and an art show featuring artists with spinal cord injury. These events are not only fun, they have an awareness component to educate those without disabilities on what it’s like, and it helps them lose the fear of the unknown. It works because when people are having fun they let their guard down and just enjoy the moment, learning and understanding from others whether they have a disability or not.
What do you think you ultimately need to attain your dreams?
I want to use art and imagery to change perspective and misconception about people with disabilities. I need an army of people to help me start an image revolution! I need people to start viewing images of people with disabilities in a positive manner, photographers to take shots empowering the person, large corporations to use successful people with disabilities as their spokesperson or face of the company, fashion editorials to include the beauty and style of men and women with disabilities, school systems to include their students with disabilities in mainstream activities and use it as an opportunity to educate other students that differences are normal, Hollywood to begin casting the role of people with disabilities with ACTUAL people with disabilities not actors pretending to be so. By doing all of the above, people begin to view persons with disabilities as contributing members of society and valuable to our community and see access as a way of life for everyone.
Have you attained any dreams? If so, what were they and what did you do to attain them?
Yes, I have attained some dreams, although I sometimes feel like I am in a constant state of dreaming. My childhood dream was to become a fashion designer, have a clothing line, fashion shows, and a boutique. At the age of 13, I was in a car accident, broke my neck, and was paralyzed from the chest down. I thought my fashion designer dreams were over until I got to high school and the sewing teacher took an interest in me. She showed me how to sew again with an adapted sewing machine. Having her believe in me gave me the confidence to pursue a degree in fashion design after high school. The school was apprehensive to take me as a student because I was the first in a wheelchair and they didn’t know what my needs were. It was my responsibility to advocate for what I wanted and needed. At times I needed to do extra work to keep up with my classmates or research on how I could successfully travel abroad for a fashion competition with my class. It was a dream come true to be in Paris at a design competition and to visit museums with artwork I had only seen in books! I eventually became a fashion designer, studied theater, and designed costumes for dance companies.
At one point I felt I was doing all of this for myself only, and I knew there was something else I had to do. I wanted to help people.
So in 2009, I created BACKBONES with the purpose of providing peer support for people with spinal cord injury. I would think back to the 13-year-old me and wish that at that time I would have had somebody my age who I would’ve talked to someone who knew exactly what I was going through. I didn’t meet others with SCI until I was in college and it made a difference in my confidence, ability, my relationships with others and self-esteem. I knew others probably needed it as much as I did, and so BACKBONES was born! Although I never thought I would be here, it has been amazing and rewarding to help others and see them transform after their injury. The loss in their eyes turns into empowerment!
I am currently at the cusp of this revolution I dream of. On June 29, BACKBONES launched Reinventing the Wheel: Stories of Life After Spinal Cord Injury. We have paired 22 photographers with 22 people with spinal cord injury all across the country. Each team has created a photo story with the purpose of documenting the REAL lives of people with spinal cord injury and highlighting ability rather than disability. The premier is at the National Museum of Health and Medicine – Chicago and then tours to Portland, Oregon this fall and continues to Los Angeles and New York in 2014.
With this tour we will begin to shift attitudes and challenge current stereotypes of the lives of people with spinal cord injuries (SCI) – leading to better access to housing, employment, education and recreation for people with disabilities!
What’s your advice to other dreamers?
In my case, I’ve come to realize that one person doesn’t make dreams happen, it’s many! Valuing what every person has to offer and absorbing knowledge from anyone you interact with is key to help me even imagine my wildest dreams!
Be bold! Dream big! Ultimately if it makes you cry and sweat, and makes you a little bit scared, but you still can’t wait to get up in the morning to do it all over again. It’s what you should be doing…and THAT must be what some call “living the dream”