Bias and perceptions are an inevitable part of life, especially when you live with a visible or non-visible disability. People are always going to have opinions about who you are, where you come from, or what they assume your life must be like. To me, one of the most important things is to create awareness, so people can understand my story instead of making assumptions.
I believe in encouraging people to ask questions. It’s through asking that we foster knowledge and understanding. Sharing my journey is something I find valuable, not only to help others understand who I am but also to broaden their knowledge about my life with Spinal Muscular Atrophy (SMA).
Of course, I am human. I have feelings, and some comments can be hurtful. However, I choose to live a life filled with hope, positivity, and belief in the goodness of others. Most people mean well, and I remind myself of that daily.
Creating a Culture of Respectful Curiosity
One question I get asked often is: “Do you prefer people to ask you questions, or would you rather they not?” My answer is simple—I love it when people ask questions. I believe that curiosity, when expressed with respect, opens the door to awareness, reduces misunderstandings, and helps people overcome biases.
That said, there’s a right time, place, and approach to asking personal questions. If you’re curious about someone’s experience, it’s important to ensure the environment feels safe and supportive. While I’m very open about my journey, not everyone is. For some, their story is still tied to pain, and they may not be ready to share it. It’s essential to approach these conversations with empathy, recognizing that everyone’s comfort level is different.
A Quote to Live By
One of the quotes that keeps me grounded is by Vivian Greene: “Life isn’t about waiting for the storm to pass; it’s about learning how to dance in the rain.” This perfectly captures my approach to life. There will always be challenges, but embracing them and finding joy amidst the difficulty is where true strength lies.
A Tip for Others Living with Disabilities
If there’s one piece of advice I could share with others who have a disability, it would be this: Live your life to the fullest and make the most of the opportunities that come your way. You may have a disability, but that does not define your potential or the life you can lead. Lean on the people around you, build your support system, and know that possibilities are endless. Your disability is just one part of your journey, not the entirety of your story.
Living authentically and embracing who you are, while allowing others to understand you through respectful curiosity helps build a more inclusive and compassionate world.