Nicole Luongo

@nicole-luongo | contributor
Nicole Luongo is an author, a disability advocate, and a writer dedicated to raising awareness for cerebral palsy. Her work has been featured on HuffPost, MSN and Yahoo.
Nicole Luongo

Why You Should Go Green on World CP Day

Did you know that countries around the globe will go green for World Cerebral Palsy Day (WCPD) on October 6, 2019? Although cerebral palsy (CP) is the most common physical disability in childhood, it seems to get the least media attention. I decided to do something about it. Making a Difference on World CP Day I created the Go Green for CP 2019 campaign. I’m proud to be the first person to single-handedly get lightings of over 100 buildings, bridges, landmarks etc. in the United States — with lightings in all 50 states — plus lightings in Australia, Canada, and Ireland to Go Green for CP (click the link to see the list) on World CP Day 2019. If you go to a lighting, please post a picture of it on the Go Green 4 CP Facebook page . I accomplished the same feat on March 25, 2019 for National Cerebral Palsy Awareness Day. ABC6 in Rhode Island announced the day, lighting of the Pawtucket River Bridge on the news! World CP Day Deserves to Shine World CP Day is a social movement of and for people with cerebral palsy and their families, including the organizations that support them, in over 65 countries around the world. Its vision is to ensure that children and adults with CP have the same rights, access and opportunities as anyone else in our society. The project is coordinated by the World Cerebral Palsy Initiative, a group of non-profit cerebral palsy organizations with a global vision to create real change for people living with CP. World CP Day is more than just an awareness day because it: Celebrates the lives and achievements of people with with CP Provides a powerful voice for those with CP to change their world Connects organizations around the globe so they can meet the needs of the CP community Raises awareness about CP and the issues that affect people with CP at local, national and international levels With our help, cerebral palsy will Go Green in 2019! View the World CP Day map or add your landmark here. 5 Reasons Why You Should Go Green on World CP Day Cerebral palsy is the most common physical disability in childhood. Over 17 million adults + children live with cerebral palsy worldwide. There is no federal funding for cerebral palsy. Cerebral palsy gets little to no media coverage. In the United States especially, we hear about other awareness days, months, but CP gets the shaft ever year. There are many inspiring stories about adults and children thriving (not suffering!) with CP. By wearing green, you can help highlight them. Myths spread like wildfire because many people don’t know much about cerebral palsy. Wear green to help focus on the facts and to show the world What CP Looks Like. Many people with CP feel alone. Wear green on World CP Day to support 17 million of us. Go Green for CP to remind everyone that green isn’t just for St. Patrick’s Day!

Nicole Luongo

Stop Saying Someone 'Suffers From' Cerebral Palsy

When an adult or child with CP is featured in the media, the story usually follows a disturbing cerebral palsy news trend: damaging descriptive language. Think about it. How many times have you read a headline describing us as “suffering?” I’ve seen countless inspirational articles with this negative verbiage. Often the rule, not the exception, it paints us with a broad brush, exacerbating the perception that we are “less than,” that everything we do is a struggle. Although life with CP isn’t a walk in the park, we are meaningful, productive members of society. I’ve written about this for The Mighty, urging the media to focus on our accomplishments instead of our limitations. Identity First or People First Language? There is power in positive language. Words matter, they shape how people perceive us and, more importantly, how we perceive ourselves. Therefore, this cerebral palsy news trend is particularly frustrating. It grabs attention in a negative way, portraying us inaccurately. There’s a lot of debate surrounding terminology. Some of us prefer identity-first language (“disabled person”) while others prefer people-first language (“a person with a disability“). It’s a personal decision; do what’s best for you. Let’s End This Cerebral Palsy News Trend It’s time for the media to stop describing us as “suffering.” It’s exploitative, false and quite frankly, we deserve better. There’s so much about CP that is beyond our control. How the media describes us shouldn’t be one of them. Whenever I’m in the press, I do my best to ensure positivity prevails. While I understand that click-bait sells, the media wouldn’t have stories to tell without us. They have the power to create a new reporting standard. First, ask us how we want to be described. Then, substitute words such as “strives” or “thrives” for “battles,” “struggles” or “suffers.” I created the What CP Looks Like community to change perceptions, shatter stereotypes and show the world what we can do. Let’s work together to change how people with cerebral palsy — or any other disability — are viewed in life and in the news. This article originally appeared on Nicole’s website. We want to hear your story. Become a Mighty contributor here . Photo by contributor.

Nicole Luongo

Stop Saying Someone 'Suffers From' Cerebral Palsy

When an adult or child with CP is featured in the media, the story usually follows a disturbing cerebral palsy news trend: damaging descriptive language. Think about it. How many times have you read a headline describing us as “suffering?” I’ve seen countless inspirational articles with this negative verbiage. Often the rule, not the exception, it paints us with a broad brush, exacerbating the perception that we are “less than,” that everything we do is a struggle. Although life with CP isn’t a walk in the park, we are meaningful, productive members of society. I’ve written about this for The Mighty, urging the media to focus on our accomplishments instead of our limitations. Identity First or People First Language? There is power in positive language. Words matter, they shape how people perceive us and, more importantly, how we perceive ourselves. Therefore, this cerebral palsy news trend is particularly frustrating. It grabs attention in a negative way, portraying us inaccurately. There’s a lot of debate surrounding terminology. Some of us prefer identity-first language (“disabled person”) while others prefer people-first language (“a person with a disability“). It’s a personal decision; do what’s best for you. Let’s End This Cerebral Palsy News Trend It’s time for the media to stop describing us as “suffering.” It’s exploitative, false and quite frankly, we deserve better. There’s so much about CP that is beyond our control. How the media describes us shouldn’t be one of them. Whenever I’m in the press, I do my best to ensure positivity prevails. While I understand that click-bait sells, the media wouldn’t have stories to tell without us. They have the power to create a new reporting standard. First, ask us how we want to be described. Then, substitute words such as “strives” or “thrives” for “battles,” “struggles” or “suffers.” I created the What CP Looks Like community to change perceptions, shatter stereotypes and show the world what we can do. Let’s work together to change how people with cerebral palsy — or any other disability — are viewed in life and in the news. This article originally appeared on Nicole’s website. We want to hear your story. Become a Mighty contributor here . Photo by contributor.

Nicole Luongo

Stop Saying Someone 'Suffers From' Cerebral Palsy

When an adult or child with CP is featured in the media, the story usually follows a disturbing cerebral palsy news trend: damaging descriptive language. Think about it. How many times have you read a headline describing us as “suffering?” I’ve seen countless inspirational articles with this negative verbiage. Often the rule, not the exception, it paints us with a broad brush, exacerbating the perception that we are “less than,” that everything we do is a struggle. Although life with CP isn’t a walk in the park, we are meaningful, productive members of society. I’ve written about this for The Mighty, urging the media to focus on our accomplishments instead of our limitations. Identity First or People First Language? There is power in positive language. Words matter, they shape how people perceive us and, more importantly, how we perceive ourselves. Therefore, this cerebral palsy news trend is particularly frustrating. It grabs attention in a negative way, portraying us inaccurately. There’s a lot of debate surrounding terminology. Some of us prefer identity-first language (“disabled person”) while others prefer people-first language (“a person with a disability“). It’s a personal decision; do what’s best for you. Let’s End This Cerebral Palsy News Trend It’s time for the media to stop describing us as “suffering.” It’s exploitative, false and quite frankly, we deserve better. There’s so much about CP that is beyond our control. How the media describes us shouldn’t be one of them. Whenever I’m in the press, I do my best to ensure positivity prevails. While I understand that click-bait sells, the media wouldn’t have stories to tell without us. They have the power to create a new reporting standard. First, ask us how we want to be described. Then, substitute words such as “strives” or “thrives” for “battles,” “struggles” or “suffers.” I created the What CP Looks Like community to change perceptions, shatter stereotypes and show the world what we can do. Let’s work together to change how people with cerebral palsy — or any other disability — are viewed in life and in the news. This article originally appeared on Nicole’s website. We want to hear your story. Become a Mighty contributor here . Photo by contributor.

Nicole Luongo

Reasons to Wear Green for Cerebral Palsy Awareness Month

March 17 is St. Patrick’s Day, and it seems the whole world is seeing green! By the next day, all posts about pots o’gold and how Irish eyes are smilin’ will be gone. The Chicago river won’t be dyed green and the color of luck, money won’t be splashed all over social media. But it needs to be. Here are 10 reasons why you should wear green after St. Patrick’s Day: 1. Cerebral palsy is the most common physical disability in childhood. 2. There are 17 million people in the world living with cerebral palsy. 3. March is Cerebral Palsy Awareness Month. 4. March 25 is National Cerebral Palsy Awareness Day, thanks to Reaching for the Stars: a Cerebral Palsy Foundation. 5.  There is no federal funding for cerebral palsy research. 6.  Cerebral palsy gets little to no media coverage. We hear about other awareness days and months, but it seems like CP gets the shaft ever year. 7.  Adults with CP are often forgotten and have trouble getting the help they need. 8.  There are many inspiring stories about adults and children thriving (not suffering!) with cerebral palsy. By wearing green, you can help highlight them. 9. Because many people don’t know much about cerebral palsy, myths spread like wildfire. Wear green to help focus on the facts and to show the world What CP Looks Like. 10. Many people with CP feel alone. Wear green to support 17 million of us. Remind everyone that green isn’t just for St. Patrick’s Day!

Nicole Luongo

Stop Saying Someone 'Suffers From' Cerebral Palsy

When an adult or child with CP is featured in the media, the story usually follows a disturbing cerebral palsy news trend: damaging descriptive language. Think about it. How many times have you read a headline describing us as “suffering?” I’ve seen countless inspirational articles with this negative verbiage. Often the rule, not the exception, it paints us with a broad brush, exacerbating the perception that we are “less than,” that everything we do is a struggle. Although life with CP isn’t a walk in the park, we are meaningful, productive members of society. I’ve written about this for The Mighty, urging the media to focus on our accomplishments instead of our limitations. Identity First or People First Language? There is power in positive language. Words matter, they shape how people perceive us and, more importantly, how we perceive ourselves. Therefore, this cerebral palsy news trend is particularly frustrating. It grabs attention in a negative way, portraying us inaccurately. There’s a lot of debate surrounding terminology. Some of us prefer identity-first language (“disabled person”) while others prefer people-first language (“a person with a disability“). It’s a personal decision; do what’s best for you. Let’s End This Cerebral Palsy News Trend It’s time for the media to stop describing us as “suffering.” It’s exploitative, false and quite frankly, we deserve better. There’s so much about CP that is beyond our control. How the media describes us shouldn’t be one of them. Whenever I’m in the press, I do my best to ensure positivity prevails. While I understand that click-bait sells, the media wouldn’t have stories to tell without us. They have the power to create a new reporting standard. First, ask us how we want to be described. Then, substitute words such as “strives” or “thrives” for “battles,” “struggles” or “suffers.” I created the What CP Looks Like community to change perceptions, shatter stereotypes and show the world what we can do. Let’s work together to change how people with cerebral palsy — or any other disability — are viewed in life and in the news. This article originally appeared on Nicole’s website. We want to hear your story. Become a Mighty contributor here . Photo by contributor.

Nicole Luongo

Being My Mom's Alzheimer's Disease Caregiver Changed My Life

I’ll never forget my mom’s reaction the first time she saw me walk. I’d walked since I was about 5 years old, but as I approached 40, my gait was drastically different. I’d just had selective dorsal rhizotomy (SDR), a life-changing surgery 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 and reassured Mom, trying to hold back my own tears. I cried realizing the beauty in the moment —  the fact that she had this thought and 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. My mom raised 11 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, 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 my 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, 2013, (four months to the day of my surgery), The Huffington Post published my article: “SDR: Life-Changing Surgery for Cerebral Palsy.” What happened next is truly amazing! In the four years since I shared my story, it’s been re-published, referenced on CP blogs, etc. 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. I’m a disability/SDR advocate raising awareness for cerebral palsy on my blog, and my What CP Looks Like Facebook page is changing the world’s perception of people with CP. My mom helped people her entire life.  As her daughter and one of her primary caregivers, I’m proud to carry the torch of keeping both the tradition of giving — and her memory (she died four months ago) — alive. We want to hear your story. Become a Mighty contributor here .

Nicole Luongo

Being My Mom's Alzheimer's Disease Caregiver Changed My Life

I’ll never forget my mom’s reaction the first time she saw me walk. I’d walked since I was about 5 years old, but as I approached 40, my gait was drastically different. I’d just had selective dorsal rhizotomy (SDR), a life-changing surgery 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 and reassured Mom, trying to hold back my own tears. I cried realizing the beauty in the moment —  the fact that she had this thought and 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. My mom raised 11 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, 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 my 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, 2013, (four months to the day of my surgery), The Huffington Post published my article: “SDR: Life-Changing Surgery for Cerebral Palsy.” What happened next is truly amazing! In the four years since I shared my story, it’s been re-published, referenced on CP blogs, etc. 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. I’m a disability/SDR advocate raising awareness for cerebral palsy on my blog, and my What CP Looks Like Facebook page is changing the world’s perception of people with CP. My mom helped people her entire life.  As her daughter and one of her primary caregivers, I’m proud to carry the torch of keeping both the tradition of giving — and her memory (she died four months ago) — alive. We want to hear your story. Become a Mighty contributor here .

Nicole Luongo

Being My Mom's Alzheimer's Disease Caregiver Changed My Life

I’ll never forget my mom’s reaction the first time she saw me walk. I’d walked since I was about 5 years old, but as I approached 40, my gait was drastically different. I’d just had selective dorsal rhizotomy (SDR), a life-changing surgery 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 and reassured Mom, trying to hold back my own tears. I cried realizing the beauty in the moment —  the fact that she had this thought and 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. My mom raised 11 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, 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 my 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, 2013, (four months to the day of my surgery), The Huffington Post published my article: “SDR: Life-Changing Surgery for Cerebral Palsy.” What happened next is truly amazing! In the four years since I shared my story, it’s been re-published, referenced on CP blogs, etc. 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. I’m a disability/SDR advocate raising awareness for cerebral palsy on my blog, and my What CP Looks Like Facebook page is changing the world’s perception of people with CP. My mom helped people her entire life.  As her daughter and one of her primary caregivers, I’m proud to carry the torch of keeping both the tradition of giving — and her memory (she died four months ago) — alive. We want to hear your story. Become a Mighty contributor here .