Go Green for CP’s Nicole Luongo

LINDSEY WELLS, HOST: Hello podcast listeners, this is Lindsey Wells, Co-host of Disability Rap, with a quick message before we air today’s show. As you know, Disability Rap is produced by FREED, a resource center for people with disabilities and older adults in northern California.  

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Thank you! And now, here’s today’s show.  

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WELLS: From KVMR and in partnership with FREED, this is Disability Rap. 

NICOLE LUONGO: Now, I'm not saying to people out there, it's all roses and don't feel your feelings. No, I'm not saying that. I'm saying don't concentrate on things that are going to make you feel bad. 

WELLS: Today Nicole Luongo on her Go Green for CP campaign and her life with cerebral palsy. 

LUONGO: I say the sky is the limit, but you know what? You have to believe that. 

WELLS: That's all coming up on Disability Rap. Stay tuned. 

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CARL SIGMOND, HOST: Welcome to Disability Rap. I'm Carl Sigmond with Lindsey Wells.  

WELLS: We're joined today by Nicole Luongo, an advocate, author, and public speaker who has cerebral palsy. In 2019, Nicole started the Go Green for CP campaign to raise awareness for cerebral palsy in this country and around the world. Through her leadership, the campaign succeeded in getting at least one building or landmark in almost every state lit up in green on National Cerebral Palsy Awareness Day on March 21st. On World CP Day on October 6th in 2021, she launched a campaign to have the White House light up in green annually on March 25th. 

She also created the social media campaign, What CP Looks Like. Nicole is the author of Naked Desires, a book of poetry that chronicles her quest and challenges to find true love. She is a fitness enthusiast and has encouraged others to enjoy fitness and get moving with reshaping our notion of what fitness looks like. 

SIGMOND: Well, Nicole Luongo, welcome to Disability Rap. It’s so great to have you with us. You are such an advocate and promoter of disability pride, that we wanted to begin by asking you: what was your journey to find disability pride within yourself? I know that's a big question, but begin there. 

LUONGO: I'm going to be 51 in a little less than a month. When you talk about Disability Pride and wanting to know more about my journey, I was the kind of person growing up with a disability where I don't know about you guys, but I didn't know another person, let alone with CP, but I didn't know anybody with a disability. It really wasn't like it is today where it would be more common. I think there was a girl who went to my middle school, now that you think back, she clearly by the way that she walked, there was something going on. I don't know if it was CP. I don't really know. 

I guess my journey to Disability Pride, I don't even think I really ever thought about it in those terms until I started becoming an advocate myself, which was just nothing that I planned to do. I was an advocate for my mother. She had Alzheimer's and I was one of her primary caregivers on her journey. Then with the internet, I've been able to meet the two of you. I've met so many people who are also advocates or they have disabilities. 

One of my really good friends, she every year does panel discussions for Disability Pride Month. I think coming up in July, it'll be the third year or the fourth year that we're doing it, and I'm a guest every year. To me, Disability Pride means just celebrate who you are, what you're able to do with respect to whatever disability you have. 

Honestly, you guys, I say forget the rest because we can sit here because you both shared with me that all three of us have something in common, which I think is pretty cool. We all have cerebral palsy, of course, to varying degrees, like with any other disability. All three of us could sit here and oh, I'm sure Carl could say, "Woe is me, I have CP. I don't like it because X." Lindsey could say, "Woe is me. I have CP, this is how it affects me and I don't like that." I can tell you, "Oh yes, there's things I don't like," but I don't really see the point in that. 

Now I'm not saying to people out there, it's all roses, and don't feel your feelings. No, I'm not saying that. I'm saying don't concentrate on things that are going to make you feel bad. Don't compare yourself to other people unless it's somebody that you aspire to learn something from them. Take away, glean something from their journey, or whatever. They don't have to have a disability. It could be anybody, but when you get into the comparison, you know what they say, that famous quote, "Comparison is a thief of joy." 

I don't think you can really have pride when you are caught up in, "Oh, I can't do this. This person can do this and I can't do it." It's not going to work. For me, Disability Pride means celebrate who you are, celebrate your disability. If that feels comfortable to you, if you're not there on-- that's not where you are on your journey, that's okay too, but I am, so I'm just speaking for myself. 

Celebrate who you are. Celebrate your disability. Celebrate how far you've come. Guys, when I was born, I was 2 pounds 13 ounces. I was two and a half months early. My mom was 44 and a half. I was her 11th child. I wasn't even supposed to make it. The fact that I'm here telling you I'm going to be 51 in June, I mean, that's celebration. 

WELLS: You mentioned it, and then Carl mentioned it earlier, the three of us all have cerebral palsy. You even mentioned this too that CP can affect the body in very different ways depending on the individual. What was it like to organize around cerebral palsy, given that those of us that have CP have such a wide range of life experiences and their disabilities show up in such different ways? 

LUONGO: With regard to my Go Green for CP campaign, listen, this is honestly what happened, guys. My mom passed away, and well, it was 27 January 2017. She died one day before what would've been her 88th birthday. She was killed in a nursing home, that's the easiest way that I can say it. I was depressed and I thought, "You know what? I need something to do." 

On October 6, 2018, which is World CP Day is now observed on the same day, it used to be a flexible date and then they change it, so it's every year on October 6. In 2018, I was able to get the Seattle Great Wheel to light up with the help of a sponsor. I found some nonprofit that agreed to pay the fee, there's a fee to have them light up. 

I had one lighting. One, and I said to myself, "I wonder if I can get more." Now, I had no experience in this. I had no idea what I was doing. It took me six months of basically working around the clock because there's so much involved that even I didn't know. People don't understand, I have to do recon, getting on the computer, and doing CSI cerebral palsy. It was crazy. 

My mind works that way where I'm like, "Hey, give me a computer and I'll find anything." Within 30 days, I had 30 states represented and I said to myself, "Something's going on here. It's a lot bigger than me because the universe is supporting what I'm doing," so I just ran with it. 

I never had the idea to light up all 50 states. I did have all 50 states, but two dropped. I tried to get two in every state because listen, things happen. One state, I forget which one it was, it was ridiculous because I would follow up with these people constantly, everybody all the time. I didn't just send one email and then, "Oh, I'll see in six months when you light up." No. 

One state, like I said, because there's so many, I forget which one, the guy who was the engineer who flipped the switch or to do lighting, he actually happened to have cerebral palsy and he forgot to do it. He literally told me in an email, "Oh, I forgot," and I'm like, "Don't people have calendars?" Or write a note in your phone or something, so what are you going to do? 

To answer your question, how did I manage that? We have to be a little bit insane in a good way to try to do what I was trying to do. When I have a goal in mind and a lot the time, which I do, I just have tunnel vision and I just sent emails to everybody that I could. I mean, Facebook messages, emails. I'll tell you if you have time for a quick story that has to do with the lightings. There's only one thing in Hawaii that lights up. It's beautiful. It's the Aloha Tower. I believe that's what it is. 

Now, the only way for me to get an answer on this was I had to call them. No email, no social media, nothing. I remember I left I think two messages and I thought, "This is up in the air," and one day the lady called me and you would've thought I won the lottery. I was like, "Oh my God. You call me back? What? I can't believe it," and that's how I got Hawaii. 

SIGMOND: Awesome. What does it represent to have these lightings, and what have you seem come from them? 

LUONGO: I've been doing this, raising awareness for CP for like 11 years now. I had selective dorsal rhizotomy surgery, which is a life-changing surgery for adults and children with cerebral palsy who qualify for it. I had that in March of 2013 and I was on a quest to get the word out about that surgery. 

That's what started my advocacy journey, and I wrote an article for the Huffington Post about the surgery, which to my knowledge is the first and only article that is on that website about the surgery. How I did that? Couldn't get through to Huffington Post. You can pitch your stories. I'm like, "Nothing's working here because I don't really know how to pitch stories. I just email people." 

One day, I sent a Facebook Messenger message to Arianna Huffington. She created the Huffington Post. I was sitting right here, the same place I'm sitting talking to you. She replied to me, I thought I was going to fall through my couch. She said, "Yes, we'd love to have you write." At the time, they had a blogger contributor network. They don't have that anymore. 

That's how I got in there, wrote that article. It went around the world. People saw it, people I'm now friends with who have had the surgery because they found that article. Their kids have had the surgery, the whole thing. Now, when we go to the lightings, Carl, what was frustrating me is that every year we hear about so many days and so many of them are important. 

Some of them are dumb, like National Pizza Day or National Ice Cream Day. We'll laugh at those, but the advocacy days, I watch The Today Show every morning, even other morning shows, that every time March came around, there was no mention of Cerebral Palsy Awareness Month the whole month. They had the whole month to do a couple of stories on it or mention it. 

Then when I found out there's National Cerebral Palsy Awareness Day on March 25th, nobody was talking about that either, so I thought, "Well, if I can do something that's really big," because nowadays, with TikTok and Instagram and X and all these other social media formats, you really have to do something big to get noticed. Otherwise, nobody sees what you're doing. 

That's why I said, "Well, if I can get some lightings to happen," my hope was that the national media would pick up the story. They never did. If you're asking me what came of it? What came of it was people all around the country who were able to go to these lightings, they would go to them and sometimes I got lucky and they would send me a picture so I could post because believe it or not, many of the places that lit up, their policy was they didn't take pictures of the lighting. 

That was shocking to me because you realize what a PR campaign that would've been for them to have somebody take a pic. I live in Florida. I don't know about you guys, but I can't be in 50 states at one time, can you? If they just would've said, "Hey, listen, it's really not our policy, but we see what you're doing. It's pretty extraordinary. We'll have somebody go out there and snap a picture," but what could I say? 

I had to work with what their rules were, what they were willing to do, and what they weren't willing to do, but people would be surprised by that, that, "No, I don't have pictures of all the lighting," but my main goal was for the national media to pick this up so that every year it would just be announced just like when October comes around, what do we hear about? Breast cancer. Isn't it October for Breast Cancer Awareness Month? Nobody has to think about it. You don't think about it. They do stories on it. It's announced. 

Now, I understand they have major sponsors that created that. That's what talks in the media. Money talks. I didn't have money. I don't have any clout. I'm not an important person, and I tried everything. Now, I was on the news in-- where was I? Now I'm forgetting where it was, but it did make it to a couple of places. I wanted The Today Show to announce it. I wanted Good Morning America, I wanted all of them. It wasn't about me. It wasn't like, "Oh, and now it's my campaign," but I was the vehicle, you know what I mean? I had to use what I had. 

I'm not a narcissist just wanting people to, "Oh, Nicole, lit up all these buildings." Well, I did do it and no one ever has done it in the history of the world, so I'm going to take credit for it because it's a lot of work. I had no help. I had nobody sponsoring me. I had no money to-- that was the great thing about it, is I didn't need money. I just needed a computer, a good brain in my head and just put my head down and went to work, but I do wish that I could have gotten some press because it would've helped all of us, and that's what I wanted. 

SIGMOND: As you mentioned, you had this surgery, selective dorsal rhizotomy, or SDR, which for some people with CP can permanently remove spasticity in the legs. I understand that you had this surgery as an adult and it really changed your life. We wanted to ask you a bit about the relationship you see between these quote unquote corrective surgeries and disability pride and disability acceptance. How did your SDR surgery impact your own understanding of disability pride? 

LUONGO: Well, I have to say that before the surgery, I think I was on my way to-- I accepted myself. When you have a disability like all of us do, it's just part of you. We really don't know any other way because we haven't experienced anything else. It's like something that you carry. I don't mean by an appendage, at least not for me. It wasn't something that weighed me down, but I carry it throughout my life because I'm going to have it all the time. 

Now I will say, when I applied, I did say to Dr. Park that one of the goals I wanted to hopefully be able to do, learn how to ride a two-wheel bike. That has nothing to do with pride, but it is a pride in a way where you could say, "Hey, maybe now I could do something I couldn't do before," but the surgery for me was I wanted to experience what I heard when I talked to-- I talked to no less than 10 adults who had the surgery, and I was operated on about 2 months before I was turning 40. 

That's old to have this type of surgery. In fact, Dr. Park had such great results with his adult patients like myself and others who came before me and after me that he raised the age to 50 because when I applied, the cutoff age was 40. The surgery didn't change my life in the way that everybody thinks it does as far as my cerebral palsy. 

What it did for my cerebral palsy is what Carl said, I no longer have spasticity, so movement is a lot easier and a lot more fluid because my cerebral palsy is mild. Unlike what people who don't know me may think, SDR didn't allow me to walk. I already walked. I was already independently ambulatory. I could run, I could exercise, I could do those things, but it just made some of those things easier depending on what those things are. 

WELLS: Thanks, Nicole. We would like to ask you to read a passage from your book, Naked Desires. You've picked out a poem for us? 

LUONGO: This is a poem from the book called, The Sea. 

The ocean is so pure, so bright, so light 

the water stays blue as darkness turns to night 

The air is calm, crisp, and cool 

when the world is cruel 

the sea is my soul’s fuel 

Water and sand 

that’s you and me 

for, I am the sand 

and you are the sea 

come, my sweet, and bring your love to me 

let me soak in your love, bask in your light I am thirsty for only you 

I want to soak in your love 

and drink until I am full 

let your love wash over me 

Water and sand 

that’s you and me 

for, I am the sand 

and you are the sea. 

WELLS: Thank you, Nicole, for that. Poetry is so beautiful and the fact that you can express yourself through poetry is so great. I have [sound cut] yours a little bit. Thank you for reading that poem for us. Do you have advice to children with CP growing up now in terms of acceptance, facing their disability, and advocating for themselves? You seem like a great advocate, and I'd like to know what you would tell a child with CP today living in today's society. 

LUONGO: I don't have children of my own, but I volunteered with many children throughout my volunteer career. If I were to give advice to a young person with cerebral palsy, I think it would go back to what Carl talked about right from the beginning, disability pride. I think I would do my best to, number one, be an example to them as somebody with CP, as an adult who probably doesn't look like anybody else. 

You know what I mean? I don't know how old you guys are, but there's that stigma. I don't know, especially with CP and there's nothing wrong with the varying degrees, not at all. Whenever people hear the words cerebral palsy, they automatically think of somebody in a wheelchair and somebody who might have diminished intellectual capacity. That's just not true. 

You can have people with more severe forms of CP and maybe they don't look the way you think that they would, or they don't sound like you think that they would, but that doesn't mean they can't live full lives even with whatever challenges they're dealing with as a result of having cerebral palsy. That's what I would want to impart on this young person. I say the sky is the limit, but you know what? You have to believe that. 

If you don't believe that, your sky's going to be here, but somebody who's worked on themselves and they've had that poured into them, their sky's going to be here. That's how I was able to have this crazy idea that, "Oh, I'm going to see how many buildings I can light up," because my sky's up here. Now, if I didn't achieve it, was I upset? Would I have been upset? No, because it's the mere act of trying. 

People get all, "Oh, I didn't achieve this goal." "Did you try?" When you put your head down on the pillow at night, are you proud of what you did? Then I call that a success. Those are some of the things that I would tell a young person with cerebral palsy or any kind of disability. Also, the final thing I would tell them is comparison is a thief of joy because you know all these young people, they're on social media. I am too, but it affects them so much in a negative way. 

I would instill that as I go along like, "Hey, you want to be on this platform or that one?” Fine. If it's okay with your parents and they say it's okay, do that, but don't let that be what you use to determine your self-worth. 

WELLS: That was our conversation with Nicole Luongo, the founder of the Go Green for CP Campaign. Nicole is also the author of Naked Desires, a book of poetry about her life with a disability.  

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And that does it for the show. Disability Rap is produced and edited by Carl Sigmond and Courtney Williams. You can go to our website, disabilityrap.org, to listen to past shows, read transcripts, and subscribe to the Disability Rap podcast. You can also subscribe to our podcast by searching Disability Rap on any of the major podcast platforms. We are brought to you by KVMR in partnership with FREED, and we're distributed by PRX, the Public Radio Exchange. I'm Lindsey Wells with Carl Sigmond for another edition of Disability Rap.