Community Chat #2 Leah

Hello and welcome! I’m so glad you stopped by this week. It’s an exciting one. I’m so honored this week to share a big voice within my community of friends. I “met” Leah through social media over a year ago, and since then we have followed and encouraged one another. I recently caught up with Leah and her mom on a video chat. They are both so kind and lovely, and I’m very glad to know them. 

Leah is only 15, but as I tell her, she is wise beyond her years. I’m certain I’m not the first to have told her that. She is incredibly caring, supportive and tenacious. She is Leah, who is disabled, and she doesn’t miss a beat. Leah recently joined me as serving as the other National Ambassador for the Muscular Dystrophy Association. They always have a child and an adult National Ambassador. When I found out it was Leah who had been chosen to join me, I was thrilled! Excited because I know the two of us together can send a powerful message, and working together we can do great things!

Dynamic Duo 💚

She has great taste in music, and we both share a love for the incomparable Audrey Hepburn. I can’t wait to see what this year brings, and word has it we will be meeting in person before too long! Yay! Without further ado I introduce you to…Leah.

Tell me a little bit about yourself. Name, age, where you are from, year in school. Future Goals.

      Hi, my name is Leah J. Zelaya. I'm from Brooklyn, New York. I am a sophomore in high school. I'm an Actress, Dancer, Skier, and an MDA Ambassador. My future goals in life are to hopefully become a professional dancer and to most importantly continue to be an advocate for the disabled community.

            If you are comfortable, talk about your diagnosis and when you were diagnosed.

      I live with a rare form of Muscular Dystrophy called Scapuloperoneal Spinal Muscular Atrophy. I was diagnosed at the age of six. Living with this condition can be hard at times. SPSMA causes my muscles to atrophy. I walk with bilateral long leg braces and utilize a wheelchair for long distances. 

      How has meeting and connecting with others who also have Muscular Dystrophy or other disabilities been beneficial to you?

      Meeting others who have Muscular Dystrophy really does encourage me. I see how independent they are and how amazing they are at things they do. It truly motivates me to continue to do what I do everyday. Sometimes living with a disability can feel lonely. I am filled with such happiness and hopefulness when people who have similar conditions or people with disabilities in general come into my life. 

         What are some challenges your disability has presented and what has successfully navigating through those challenges taught you? 

      Some challenges I have to face with this condition are weakness in my hands and legs. I get frustrated when my body displays signs of weakness. I often work out as much as I can in order to stay fit and strengthen the weaker parts of my body. During difficult times I focus on thinking positive and being around comforting family and friends. 

      How has your disability shaped your life up to this point?

      My disability is part of my life, it's all I know. Living with this condition has taught me early on how to appreciate people who truly love and appreciate me. I've also learned how to take rejection well. It has taught me how to accept myself for who I am, and not worry about what society thinks of me, and to be a blessing to those who need encouragement. 

      What is one thing you would like people to know about disabilities that may be a common misconception? 

      I think that people often think that we need assistance in all things. We are not able to think or care for ourselves. Although we may do things differently, we are capable of independence. We are people who just like anyone else, prefer to be asked before getting assisted. I think people focus so much on the physical appearance of a person, rather than getting to know them. Most people cannot get past my disability. I still get a lot of stares and assumptions that I need help with everything. Although I appreciate help, I much prefer to figure out how to do things on my own. 

      Tell a little about how you know me, and if knowing someone older than you has helped/helps you along your journey to seeing yourself in the future. Not necessarily just me, but other adults in your life too that help to encourage you along the way, that also live with a disability.

     I am so thankful to know you and others, (like my father and Mindy Henderson) that are successful and have disabilities. This has encouraged me to continue in my journey. I feel hopeful and confident about my future. There is a place for me and others in this world and if we work hard we can definitely accomplish our goals.   

      What is your greatest accomplishment to date and why are you proud of it?

      Although I have done many different things in my life, my greatest accomplishment in life is being an Advocate for people with disabilities. I truly am grateful that I have the opportunity to share my story freely with others, raise awareness, and encourage them to pursue what they love. 

     What is the most frustrating thing about living with a disability? 

     The most frustrating thing about having a disability is the lack of accessibility that still exists. There are still places I would love to visit free from barriers, but are simply impossible. For example, we are still in the stone age when it comes to air travel, visiting some restaurants or establishments in the city where I live. There have been times where I would have to cancel plans because of a lack of accessibility. 

      The key to self-acceptance is…   Not to care so much of what others think and what society sees as "normal". You must truly take life one day at a time, enjoying every moment, loving yourself enough to seek your passions and finding a way to accomplish them. 

      See what I mean? She is wise beyond her years. I just love hearing the outlook of a 15 year old girl, who lives with a disability, approach to life. I see a lot of my younger self in Leah, but I also see that she is far further along in her self-acceptance than I was at her age. I admire her humble courage and approach towards life. Living well and helping others on their journey are goals we both have in common. Through connections, and openly sharing our stories and outlook on life, we can link arms together to form a very strong community and bond. I look forward to seeing what this wonderful young lady accomplishes in her future. Thank you Leah for sharing your story on Humbly Courageous. 💚

   

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