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Nicole Luongo | What CP Looks Like

Cerebral Palsy Awareness + Education

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  • Angst of Alzheimer's

    Writing

    The Angst of Alzheimer’s

    What does life look like if forgetting is your normal state of mind? Disability advocate Nicole Luongo shares her Alzheimer’s caregiver experience in honor of her mom.

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    • whatcplookslike
    This is me when I was five years old. I just wante This is me when I was five years old. I just wanted to be loved, accepted. The same is true today. When you grow up with a disability, you’re different from everyone else. That’s just the way it is. Back then, I didn’t know anyone with cerebral palsy. There weren’t other kids who were like me, in the same way. No one understood what it felt like to be stared at all the time, or get teased for walking funny. There were no awareness days when I was young…heck no one even talked about CP. I didn’t even know what it was, just that I had it. Cut to forty-four years later. Everyone’s talking about accessibility, disability awareness and inclusion. How about including CP in the NATIONAL MEDIA? Maybe if it got just some of the coverage given to other disabilities and/or causes, we could move the needle because… Cerebral palsy IS the most common disability in childhood yet… * There is NO federal funding for it * Parents are given little to NO information about it when their child is diagnosed * Adults (like me) are often left to fend for ourselves, unable to find doctors who are knowledgeable about CP. We simply don’t get vital care, resources we need throughout our lives. Raise your hand 🙋‍♀️ if you think this is UNACCEPTABLE?!?! These are just some of the reasons raising awareness for @worldcpday is important to me. The media isn’t going to help us, so WE must do it. Let’s light up social media in green on OCTOBER 6! There are little boys and girls and adults, with CP too, all over the world, who just want to be ACCEPTED. LOVED. SEEN. Let’s show them that they are, and that they’re not alone. Let me know in the comments…what (or who) is your reason for wearing green today? 💚💚💚 #NicoleLuongo #CerebralPalsy #whatCPlookslike #MillionsofReasons #WorldCerebralPalsyDay #GoGreen4CP #InclusionMatters #RepresentationMatters [ID: A picture of Nicole at five years old. She’s smiling, and she’s wearing makeup (that she probably applied). She has straight, dark brown hair in pigtails tied with lavender fabric. A Facebook frame with the words WORLD CEREBRAL PALSY DAY OCT 6 are shown in the upper left hand corner of the picture.]
    When I served on the World CP Day Committee for @w When I served on the World CP Day Committee for @worldcpday, members were asked to submit a quote. I sent this one, and it blew up for good reason. Most of the time, when the media covers a CP story, it's about a cute kid. Don't get me wrong - I have nothing against cute kids, I was one. The problem is that many resources are only available to children, even though they grow up to be adults with CP. Unfortunately, adults don't get the help they need. I didn't. Note: I didn't get any help when I was a kid, either. I'm angry that adults with cerebral palsy DON'T get the help or resources they need. NEWS FLASH: CP doesn't go away when we turn 18! I'm mad that my disability is always forgotten, especially in the media. I'm tired of reminding the world of a day that was created by @cpalliance in 2012. Since October is National Disability Employment Awareness Month, this is a call to action to all NONPROFITS and platforms that publish our articles: PLEASE PAY disabled people for their CONTENT, expertise + knowledge. You don't work for free, so why should we? Here's how YOU can help: SHARE THIS POST and don't forget to #GoGreen4CP TOMORROW, OCTOBER 6, for World CP Day! P.S. Do you remember this @simplemindsmusic song? Link in bio or go to https://nicoleluongo.com/dont-you-forget-about-cp/ 💚💚💚 #Advocacy #CerebralPalsy #CallToAction #NDEAM #NoPayNoWay #RepresentationMatters #LetsDoThisTogether #WorldCPDay #WednesdayWisdom #GreatQuotes #ISaidIt [ID: A gray background. In the middle, there's a picture of Nicole's logo on her website. It's a quotation from Nicole in a dark gray box. There's a green box on top of the gray box. At the top, there's a quotation mark in white, followed by a white line. The quotation reads: "Children with CP become adults with CP. They need help and their stories need to be told too." The name Nicole Luongo appears at the bottom right. Underneath the quote in bold, bright green letters it says CEREBRAL PALSY AWARENESS followed by a green dot and the word EDUCATION.]
    @worldcpday is on October 6. How will you be celeb @worldcpday is on October 6. How will you be celebrating? FUN FACT: World CP designed this logo for my #Groundbreaking Go Green for CP campaign. 💚💚💚 Learn 5 reasons to #GoGreen on #WorldCPDay at the link in my bio or go to: https://nicoleluongo.com/go-green-on-world-cp-day/ PRO TIP: You can download the official #MillionsofReasons World CP Day logo (and more resources) on their website. 😉 #CerebralPalsy #CerebralPalsyAwareness #whatCPlookslike #DisabilityAdvocate #Advocacy #FirstOfItsKind #RepresentationMatters 💚💚💚 [ID: World CP Day's official logo designed for my Go Green for CP campaign. A white background. At the top, it says #GoGreen4CP in bright green letters. Below there is a bright green lightbulb. Inside of the lightbulb there's the year 2019 in white, and below it, there are two white curved bars with three pointed indentations on top. The center is the same but filled in in green.]
    Leave a 💚 below if you agree! Find out how to Leave a 💚 below if you agree! Find out how to #WinAtLife at the link in my bio or go to https://nicoleluongo.com/how-to-win-at-life-like-an-olympian/ #NicoleLuongo #CerebralPalsy #SDRChangesLives #whatCPlookslike #GetInTheGame #MotivationMonday #Success #QuoteofTheWeek #QuotesAboutLife #QuotesToLiveBy #Winning [ID: A green background. In the center there’s a box with a black border around it. In the center of the box there is a white, round illuminated circle. Inside the box, superimposed on top of the illuminated circle, is a quote from Nicole in black text. It says: You can’t achieve anything if you’re on the sidelines of life. Get in the game! Nicole’s Instagram @whatcplookslike is below the text, in the center.]
    Life with #CerebralPalsy can be exhausting! We exp Life with #CerebralPalsy can be exhausting! We expend 5-7 times more energy doing daily tasks, so it’s no wonder we’re tired. It’s okay to take breaks. It’s healthy (for your body + mind) to take breaks. It’s necessary to take breaks. Taking breaks doesn’t mean you aren’t productive. REPEAT AFTER ME: Just because you take breaks doesn’t mean you’re broken. Click the link in my bio for some self-care tips. Or, go to https://nicoleluongo.com/cerebral-palsy-self-care-tips/ What does taking a break look like to you? 💚💚💚 #NicoleLuongo #whatCPlookslike #CerebralPalsyAwareness #Disabilities #SelfCare #SelfCareTips #WednesdayWisdom [ID: A green background. In the center there is a white, square pop up bubble with black text. At the top it says Reminder. Underneath it says: Just because you take breaks doesn’t mean your broken. There’s a vertical line under the text. Underneath, to the left, in blue letters, it says Close. There’s a vertical line. To the right, in blue letters, it says Got it. Nicole’s Instagram @whatcplookslike is below the bubble, in the center.]
    September is World Alzheimer's Month. The blog pos September is World Alzheimer's Month. The blog post (at the link in my bio) talks about what not to say to people with disabilities, especially those with Alzheimer’s disease. Let’s think before we speak. #AlzheimersDisease #CaregiverLife #Disabliities #CerebralPalsy #whatCPlookslike #ThinkBeforeYouSpeak #DontSayThat #WorldAlzheimersMonth #SFLA #Seattle [ID: A photo of Nicole and her mom from 1992. They're smiling at the camera, sitting at a table in restaurant.]
    Here’s how to chop an onion in a @vitamix. No kn Here’s how to chop an onion in a @vitamix. No knives, no tears! Well, you might cry because it’s so EASY. #NicoleLuongo #CerebralPalsy #whatCPcookslike #Accessibility #AccessibleCooking #Cooking #CookingHacks #Blenders #Vitamix
    I love meeting new people. Rob’s a great guy! DM I love meeting new people. Rob’s a great guy! DM him to help him reach his goal of meeting 10K people! #Repost @robs10kfriends with @use.repost ・・・ 5074. “I was almost 40 years old and I was like wait a minute, why haven’t I ever heard of this surgery? So it really became my life’s mission to get the word out about this surgery.” Born 2.5 months premature, Nicole Luongo came into the world at 2 lbs 13 oz. “I was my mother’s last and 11th child.” She was also born with cerebral palsy, and therefore had to have heel cord lengthening surgery at 4.5 years old. “So I believe I didn’t walk ‘on my own’ until I was 5.” Always resourceful, though, Nicole constantly found ways to get around by putting shoes on her hands. “That’s how I am as a person where if I can’t do it the traditional way, I’m just gonna find some other way.” As she grew older, Nicole graduated with her Business degree from @floridaatlantic; however, she’s been most fulfilled when being an advocate. At 39 years old, she underwent a selective dorsal rhizotomy (SDR surgery), which changed her life. Afterwards, she had more mobility, including better abilities to climb stairs unaided and walk backwards. Wanting to spread the word, she shared her story in @huffpost only after staying persistent and reaching out to @ariannahuff directly. Nicole also managed to get 48 of 50 states (2 of them forgot) to light up green for CP in March of 2019! Now, though, she’s thinking of other ways to spread awareness by joining groups like @diversability and thinking of starting her own podcast! So nice to meet you, @whatcplookslike! #10kfriends #philly #fortlauderdale #florida #cerebralpalsy #advocate #resourceful #fau #sdrsurgery #huffpost #gogreenforcp #podcast #whatcplookslike #somegoodnews #robs10kfriends #meetingpeople #SDRChangesLives • How we met: Nicole came across my project via her friend, @imtiffanyyu (#3846), and then DM’ed me to meet! • Swipe to hear more about how Nicole spread the word about selective dorsal rhizotomy (SDR)! 🌎✍🏼 • Click the link in my bio if you’d like to support me via Patreon! 🙏🏼
    From my blog post (link in bio): “The Disability From my blog post (link in bio): “The Disability Pride flag was designed by Ann Magill, a disabled woman. The flag has a black background with five zig zag lines diagonally across the flag in blue, yellow, white, red, and green. The lines symbolize a lightning bolt and each color represents the following: The black background represents the suffering due to ableism or violence; it’s also the color of rebellion and protest. The lightning bolt represents how individuals with disabilities must navigate barriers, and demonstrates their creativity in doing so. The five colors represent the variety of needs and experiences in our community: Mental Illness, Intellectual and Developmental Disabilities, Invisible and Undiagnosed Disabilities, Physical Disabilities, and Sensory Disabilities. The parallel stripes represent solidarity within the disability community, as well as all of its differences.” Click link in bio to read my Disability Pride Month poem or go to https://nicoleluongo.com/disability-pride-month-poem/ [ID: A picture of the Disability Pride flag designed by Ann McGill. The flag has a black background with five zig zag lines diagonally across the flag in blue, yellow, white, red, and green.] #Disabilities #DisabilityAwareness #DisabilityPride #DisabilityPrideMonth #Poetry #Poems #CerebralPalsy #whatcplookslike #RepresentationMatters
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