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  • julialuv47 shared a letter in the Group logo of What does representation mean to you?What does representation mean to you? group 1 year, 6 months ago

    The change I so desperately crave

    Representation to me means the whole entire world and takes on a whole new level when you weren’t born the so-called typical way and your body doesn’t fit the mold. I have a form of Cerebral Palsy known as Spastic Diplegia which translates to both of my legs being affected resulting in difficulties moving around. I use all different types of things for mobility aid ranging from leg braces, a walker and occasionally a wheelchair for longer distances. A little bit of a back story. I’m a triplet as a result of in vitro we came into this world at thirty weeks so when you come to think about it my family and I are truly blessed as things could have been a whole lot worse. Under no circumstances does that mean I’m not deserving of being seen. I have so much to offer this world but don’t have as nearly as many audiences to show as I should. All throughout my years of elementary, middle and high school I had something called an individualized education plan which had my specific needs documented such as extra time on tests and so on including the therapies I received physical and occupational. I have fine motor difficulties however they are not as prevalent as my gross motor ones. There will never be a time when I don’t need physical therapy. I attend an intensive place bi weekly and at the end of every session I feel so proud of myself. It can be absolutely grueling at times but it’s so worth it. Another thing I had in school was a one on one aide to help in making sure I navigated from place to place safely. Fast forward to after high school graduation and I no longer have either of those things. I in a sense fell off the face of the earth. There is literally nothing for me now as all my life I have been told I fall in the middle somewhere or am too high functioning, but then again keep in mind things can be too advanced for me as well. A number of programs I have reached out to don’t even bother responding I shouldn’t have to experience what I do on a daily basis boredom beyond measure because I have very few things to occupy my time which is off the scale frustrating because not to toot my own horn but I am very smart I just need a different approach than most. For example when I was in eleventh grade I was inducted into the world language honor society and took it a step further and filled out an application to become an officer ultimately becoming the secretary. I have a love of learning but regular college run classes have never been suitable for me as I get extremely overwhelmed with the pace. I have had six surgeries to date and the uncertainty my life presents can be paralyzing some days but I will never ever give up and do not let anything stop me. I have gone rock and boulder climbing reaching the top both times thanks to my amazing friends who to say I’m lucky to have would be an understatement. This applies to my family as well. A support system goes such a long way but now it’s time we reach the highest grounds and soar. I also did adaptive skiing, zip lining, a flying trapeze and will be looking into adaptive surfing for next summer. I get a lot of enjoyment riding my adaptive bike too. Another thing I am working towards is ice skating. In preparation for this I have been practicing in therapy by ambulating with scooters under my feet. Life has thrown me a bunch of curveballs so I want to remind everyone of this, you truly never know the depth of what someone may be going through so in a word where you can be anything just be kind. Here’s a bonus: being kind doesn’t cost a thing plus it’s a two way street you will begin to reap the rewards too trust me on that. I don’t know what job path I would like to go down just yet but I do know one thing for sure: I want to spend all of my life using my voice to help others. This was fueled more so than I could have ever imagined back in 2019 when I became a volunteer suicide mental health hotline operator. It’s fully online through texting. It lit a fire in my soul that I never saw before and I don’t plan to ever stop feeding that passion of mine. When you’re in tune with your own voice you have the power to move mountains, and that is my exact mission in life to do just that, envisioning the best possible future for all. After the conversation you have with the person they have an option to anonymously write something if they want to, like feedback of how we did. They are all very nice but one in particular made the happiest tears flow out of me and I will never forget it as long as I live. It changed my view of literally everything. They called me an angel saying I saved a life today and that I should be proud of what I do. I have every reason to be. That statement leaves me utterly speechless miracles happen in our everyday lives if we look hard enough. To tie back to the theme of this letter representation I always say to myself if someone was in my shoes or anyone with challenges it would be a different story as they would see where I’m coming from. I will always use my voice for all especially those who can’t voice their thoughts to ensure that those with physical challenges on all degrees can have just as much visibility as everyone else I think it’s absolutely wonderful that when it comes to cognitive disabilities like autism and Down syndrome that the world recognizes it as that’s how it should be however we should be represented just like that I hope for this to go viral and be seen by as many possible those in the higher education field would be an ideal start.

    Julia

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    • Julia, you are truly strong. I hate that the world we live in has such standards on society and when you are out of the so-called norm there are always stares. Your amazing even though your fighting with something you have no control over. I hope they show more representation with Spastic Diplegi. It’s the first time I’ve heard of this. I’m glad you are spreading your letter to the unsealed community I’ve learned a lot from you. Keep thriving your letter should be viral.

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      • ⚠️ This letter has been reported

        Kayjah,
        Thank you for your interest in my story and your support!!!!!! Educating others about what I live with means everything to me and your words will stay with me forever. Have an amazing night keep making your incredible mark on this world and again thank you SO much truly ❤️❤️

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    • Perseverance! Julia you show so much perseverance in your representation and I felt it through the letter. Despite the adversities faced you have still stood strong self vigilante and forward! Very honorable. Please keep striving! 🙂

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      • I truly needed this tonight. Your kind nature is everything ❤️ Thank you so much for sharing your bright light Gie! Enjoy your night and have a wonderful week xoxoxoxoxo you rock

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        • For sure!! Im so glad Lauren created this platform! We are gonna build stellar connections here and grow well beyond our fears! You are a light too Julia and I always want you to shine!! 🙂

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          • I’m endlessly grateful for Lauren as well and agree with everything you said!!! Thank you for your kindness and sharing your character with me Enjoy the rest of your day and weekend

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    • Great article! Would love to talk to you more about your experiences. I have CP too! And have an Instagram page where I post about it, adaptint2yourabilities. If you want to know more about how I do things with CP or just general motivation, thank you for creating this community, Lauren!

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