 Ableton On Air is sponsored by Green Mountain Support Services, empowering people with disabilities to be home in the community. Washington County Mental Health, where hope and support comes together. Media sponsors for Ableton On Air include Park Chester Times, Muslim Community Report, WWW, this is the Bronx.info, Associated Press Media Editors, New York Parrot Online Newspaper, U.S. Press Corps, Domestic and International, Anchor FM and Spotify. Partners with Ableton On Air include Yachad New York and New England, where everyone belongs, and the Orthodox Union. Ableton On Air has been seen in the following publications. Park Chester Times, New York Parrot Online Newspaper, Muslim Community Report, WWW, this is the Bronx.info and www.h.com. Welcome to this edition of Ableton On Air, the one and only program that focuses on the needs, concerns and achievements of the differently able. I've always been your host, Lauren Seiler. Arlene is not here today, Arlene is not here today, but we would like to say thank you to Green Mountain Support Services for sponsoring our program and many, many, many others. Welcome Nicola Wango who is a cerebral palsy advocate and who does a television program called CP Conversations for Green Mountain Support Services. Can you tell us a little bit about your advocacy, how you became an advocate despite your cerebral palsy and CP Connections? I mean Conversations, sorry CP Conversations. I just want to thank you for having me on today and let you know that it's a pleasure to speak to you and I can absolutely tell you a little bit about how my advocacy journey started. I never really advocated for cerebral palsy when I was growing up because it was just something that I had that I lived with under the youngest of 11 children. So that's a full plate right there when you have so many people in the house and my mom never drove a day in her life. So I just went about my business and achieved everything that I wanted to do or work on whatever I wanted to do in life, but it actually comes full circle back to my mother. That's how I got started advocating not only for Alzheimer's which is what she had but it is because that I was trying to find help for her. We were having problems finding help because it's very expensive and one day I saw a contest that was popped up on Facebook for caregivers and if you won the contest you would get 10 hours of in-home care for the person that you're taking care of and you would win like other prizes which I didn't care about the other prizes I just wanted help for my mom and what you had to do to enter that contest is you had to submit your story somebody could submit it or you could submit it and I told one of my brothers about this and he actually wrote something beautiful on my behalf and the story goes I was would check in there in case somebody left me a comment because I always want to acknowledge people if they're kind enough to vote for me or you know leave a comment there was one woman on there who left a comment and she said that she was going to enter her brother in the contest and he get this this is where it gets really kind of like the universe is speaking to you he was the youngest of 13 children he also had cerebral palsy and his mother also had Alzheimer's so I said wait a second how many times how many things could you have a comment with one person but it leads to advocacy because that person had selective dorsal rhizotomy surgery the same surgery that I would go on to have it'll be eight years at the end of this month so if I did not enter that contest I wouldn't be speaking to you now because I was trying to get help from my mom and in turn I actually found out about a life-changing surgery that changed my life yeah so um getting to you being a book writer um because I read some of your uh synopsis on your books can you explain a little bit about that I am the author of a poetry book it's called making desires I just um okay that's an open and the title's there but well there is a story behind that since we we were talking about dating off air earlier I you know I was enamored with someone and he was my inspiration to you you know write poetry I'd never really written poetry before and I would try to go to sleep at night and I don't know if you ever had this happen to you but sometimes words they would just they would just come to my mind and I just wanted to go to sleep so I had do you remember I've I books do you remember the old the mac the old okay I used to have one of those and it was max max so horrible uh apple well some people okay actually the book is going to be in print 20 years next year oh one wonderful act we must get we must get a copy amazon and you can see I did a television interview for NBC6 South Florida and you can see that interview on my website okay great um you know I know that people are not well some people might be prisoners of their disabilities or or their disability might stop them what makes you keep going you've asked the question that I've asked myself many times and the answer that always comes to me is I think I was just born like this there's something inside of me that I just never give up I mean when I was born Lawrence they called me the miracle baby because I was two and a half months premature my mom I think she she almost she didn't die obviously in childbirth but they there was a there were issues problems with because she was 44 and a half when she had me and I was the size of a baby chicken that's what I was told that I was you know if you put your thumb up like an adult thumb I was so small and I couldn't walk until I was five years four and a half five when I had heel heel cord lengthening surgery so what I would do Lawrence is I would put my hands and shoes whether they belong to my parents or any of my 10 siblings anybody and I would crawl around the house like that so I think that even at a young age something inside me said hey I can't walk like like all these other my siblings and people that I see but I'm gonna find a way to do it and that's what I did okay you know being a book author is a hard thing disability or not what what made you want to do that did you want to tell your story more or you know trials and tribulations and that kind of thing goes I was in I started writing and then I was in a couple of poetry groups but I'm gonna say Barnes and Noble I might be ancient now like do they you know some a lot of stores unfortunately have gone out of business but when we used to be able to go out and go to bookstores and places and meet with people and a few people that I knew they started publishing their work actually I have to give a shout out to my friend Tony I don't know if he'll ever see this but my friend Tony he published his book probably 22 years ago it's a self-improvement book and he would always tell me Nicole why don't you why don't you put your poems in a book and I literally thought what's he talking about like why would I want to do that because that was back think 20 years ago Lawrence that was right when self-publishing was just kind of getting started it was very new so I decided to go that route because to publish a book in a traditional way it really wasn't going to be the best option for me because let's just put it say it the way it is publishers are not clamoring to publish poetry books so that's another area where you and I have talked about all the time how people with disabilities we make things happen if there isn't if there isn't a way we make one so with self-publishing anybody can publish a book and we've seen that now there's so many different ways to self-publish and you can get whatever story that you want to tell out there and so you know that's what that's what I did people always ask me if I'm gonna write another book and so far the answer is no because if I did write another book I would want maybe it to be it wouldn't be poetry I mean it would probably be advocacy or something along those lines but writing a book and the process to to market it and all those things it's it's a lot harder than people might think you know well like I said before we have to just try because if we don't try it's the old the old adage the little engine that could you know the old saying um but but you know people with special needs like I said before when you interviewed me um you know which is going to be on green mount support services website um you know cp cp conversations we you know we we as special needs can't give up so easy so why do you think people with special needs give up so easy is there a reason behind it on on your end of opinion there's several things that come into play but before I answer that question I want everybody to know that with my advocacy work I published an article for huff post called sdr life changing surgery for cerebral palsy and that that article has gone around the world I have heard from parents and adults with cp who have told me that that article changed their life because they never heard of the surgery and they went on to have the surgery so by sharing my story I'm helping other people just like what you're doing by having your show and featuring people like me so that everyone can see that our stories matter too and we can contribute positively to the world and to answer your question some people with disabilities I know you've seen it I've seen it they just they're complacent I think in their lives I think that they might not have people around them who are speaking positively to them so think about it if you if you live in a household or you're around friends who maybe are speaking down to you or they they think that you can't accomplish much so they're projecting that onto to you then then I think that's a reason maybe that somebody wouldn't want to strive for more but I also think that it you have to think about like with cerebral palsy there's different levels of cerebral palsy like everybody seems to think because the media doesn't cover our disability even though it's the most common physical disability in childhood there's four different types of cerebral palsy and not every person with cerebral palsy is affected the same way so if you have somebody like me who has high functioning and I don't have any other underlying medical issues that's a different story than if you have somebody with cerebral palsy and let's say they have challenges in different areas that might make things harder like let's say they they have trouble reading I mean some people with CP have trouble speaking there's you know what I mean so they might feel that well you know I don't speak well so they can't host a podcast that's not true you and I know people who they have challenges in many areas but if you want something and you you want to work for it and you want to do it don't let anybody I don't care if it's family if it's friends if it's your boss or somebody in your community you define who you are and what you want to do yeah because like I said the point is you know okay we for example we might not become rich from what we're doing but if you don't try how like example and it goes back to the articles that I recently wrote you know I believe you know in spiritual you know believe in something you know spirituality you know if God gives you something or gives you a gift use it so what um how how um did you have well did you have anything really bad happen in your life that you can tell people well that that made you persevere more I mean you know along with you describe it is that I grew up in a very dysfunctional family mm-hmm I'm the youngest of 11 children so without without going into details you know that's that creates challenges in and of itself that really you don't even you don't even realize the more until you get older sometimes you don't you know like you just you live with the people that you live with and it affects you however it affects you but you don't have a choice in that you you don't have a choice of what environment you grow up in yeah now I'm not saying that people didn't love me or anything like that but I should I could write a book on some of that stuff and people wouldn't believe me they would think that it was reality show and it's it's not you know but you know I I chose to you you chose focus on you chose to break away from that let's put that way correct yes mm-hmm yes because I you know if something if something is not serving you and people are toxic even if even like I said I'll repeat again even if their family or friends sometimes you have to love people from a distance well last question because we can make this the last question because we only have a little time left describe toxic for people with special needs if they or our viewers who don't know a toxic relationship for example how do you how can you break away from that to make yourself more positive example that I actually just did you know I'm talking about anybody you don't have to have a disability to relate to if you have somebody in your life who is talking down to you constantly speaking negatively to you and I'm not referring to anybody in particular right now at this moment I'm just giving an example but I did have a situation happen recently where I felt that someone who I thought was my friend wasn't a true friend and so I made the decision to block that person on all social media because we control who we let into our lives we control the thoughts that go into our brain and and we all have a right to stand up for ourselves and I think boundaries are very important you have to make it clear to people that hey you know if you're going to speak to me this way I'm not going to speak to you I'm going to walk out of the room and I'm going to come back maybe when when you're the person is clear headed or they can calm down then we'll have we'll continue the discussion but that's something I had to learn I I go to therapy I see a counselor you know every two weeks probably for the past 15 years and you know I had to I had to learn all that because I didn't grow up in that environment. Our guest today was Nicole Luongo a host of of CP conversations which is a podcast for Green Mountain Support Services. She's a self-advocate and she's a book author who happens to be an advocate as well. We would like to thank her for bringing a guest on Abledon on Air. Thank you again for being a guest on Abledon on Air. I'm Lauren Seiler. Arlene is now here today. Thank you to our sponsors. See you next time. Abledon on Air is sponsored by Green Mountain Support Services, empowering people with disabilities to be home in the community. Washington County Mental Health where hope and support comes together. Media sponsors for Abledon on Air include Parkchester Times, Muslim Community Report, WWW, this is the Bronx.info, Associated Press Media Editors, New York Parrot Online Newspaper, US Press Corps, Domestic and International, Anchor FM and Spotify. Partners with Abledon on Air include Yakhad New York and New England where everyone belongs and the Orthodox Union. Abledon on Air has been seen in the following publications. Parkchester Times, New York Parrot Online Newspaper, Muslim Community Report, WWW, this is the Bronx.info and www.h.com