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Life & Work with Nicole Luongo

Today we’d like to introduce you to Nicole Luongo.

Hi Nicole, we’re thrilled to have a chance to learn your story today. So, before we get into specifics, maybe you can briefly walk us through how you got to where you are today?
I’ll never forget my mom’s reaction the first time she saw me walk. I’d walked since I was five years old, but as I approached 40, my gait was drastically different due to a life-changing surgery. I’d just had selective dorsal rhizotomy (SDR), a procedure that removed the spasticity caused by cerebral palsy. While we waited for the elevator to open, my mom’s eyes welled up when she said: “I’m sorry I didn’t know.”

Standing there stunned, clutching my walker, I hugged, reassured mom, trying to hold back my own tears. I cried realizing the beauty in the moment — the fact that she had this thought, the ability to express it to me. As Alzheimer’s invaded my mom’s brain, she was having a much harder time understanding things, she was frequently at a loss for words, and when she tried to speak, she often didn’t make sense. Originally from the North End in Boston, mom raised eleven children without driving a car or using a computer. I am her youngest child, the only one born with a disability.

We’d never really discussed my cerebral palsy or how it affected either of us. When I saw the pain in her eyes as she apologized for not knowing about SDR, I knew what I had to do: pay it forward, share my SDR story far and wide! I didn’t want adults and children with CP or their parents — to stumble upon this surgery on Facebook like me. I discovered SDR when I entered a caregiver contest in a desperate attempt to help my mom. I wasn’t looking for something to help my disability. My love for mom led me to the surgery that would change my life.

I believe knowledge is power, and my goal was to give the CP community this game-changing information. If my story helped one person or one parent like my mom, who feels they didn’t do the best for her child, it would be worth it. On July 29, 2014, (four months to the day of my surgery), HuffPost published my article: “SDR: Life-Changing Surgery for Cerebral Palsy.” What happened next is truly amazing! In the years since I shared my story, I’ve been featured in the news, my work has been re-published, referenced on various CP blogs and websites. I’ve heard from so many people — in the U.S. and around the world — about how my article changed their life or their child’s life. I mentor potential candidates, answer (non-medical) questions whenever someone is considering the surgery. SDR led me to a greater purpose, and I’m on a mission to change the world’s perception of what CP looks like.

I’m sure you wouldn’t say it’s been obstacle free, but so far would you say the journey has been a fairly smooth road?
I don’t know anyone who’s life has been a smooth road. Having a disability means there will always be challenges in life — from fighting society’s ableist mindset, to the lack of accessibility to inequity in the workplace.

I’m quoted as saying: “Children with CP grow up to be adults with CP. They need help and their stories need to be told too.” Although CP is the most common physical disability in childhood, it gets the least attention. There’s no federal funding for it and adults often don’t get the care, resources they need. I created the hashtag #whatCPlookslike to change perceptions, raise awareness for cerebral palsy and give a voice to people thriving with disabilities, many of whom often feel invisible.

As you know, we’re big fans of you and your work. For our readers who might not be as familiar what can you tell them about what you do?
I’m an author, a disability advocate, a published writer, and a speaker. I specialize in raising awareness for cerebral palsy (CP) and selective dorsal rhizotomy (SDR), a life-changing surgery for adults (like myself) and children with CP.

I’m known for my advocacy work. In 2019, I created the Go Green for CP campaign. I became the first person ever — without compensation or prior experience; this was a solo endeavor — to secure at least one building, landmark, etc. in almost all 50 states to light up in green on National Cerebral Palsy Awareness Day (March 25) and on World CP Day (October 6), with lightings in three different countries.

Last year, I started a campaign to get the White House to light up in green on March 25 for National Cerebral Palsy Awareness Day. My efforts led to a tweet that currently has 60K+ views. This sparked a movement, and a Change (dot org) campaign which received 40K+ signatures in less than two months. For Cerebral Palsy Awareness Month (also in March), I had the honor of interviewing Maurice Benard, the Emmy award-winning actor, New York Times best-selling author, and mental health advocate known for his portrayal of “Sonny Corinthos” on General Hospital.

I’m most proud of how I help others by sharing my story. My HuffPost article “SDR: Life-Changing Surgery for Cerebral Palsy” is the reason many adults and children from around the world have learned about, had SDR surgery.

Is there anything else you’d like to share with our readers?
Although I’m proud to advocate for and represent the disability community, being disabled is just one part of who I am. People with disabilities have gifts to share with the world. Sometimes, they just need to be given the chance to shine. The motto I live by is “If you never ask, the answer will always be no.” Not being afraid to go after my dreams has led to me achieving things my younger self would have never even imagined.

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