The Journey from Childhood to Adulthood: Embracing My Ability and Purpose

As I reflect on my childhood, I often find myself thinking about how much changed when I entered my teenage and adult years. As a child, I had so many opportunities to shine. I played adaptive sports, participated in a T-ball league (Walkin Roll). I also tried bowling—though it wasn’t my favorite, since the balls were way too heavy for me to manage. But despite the challenges, I always felt a sense of lightness and joy. There was a certain innocence in the way I was seen—a cute little girl with AMC (Arthrogryposis Multiplex Congenita), a rare condition that made me different, but in a way that was almost celebrated.

My mother made sure my hair was always done, and was well dressed. She created an environment where we felt seen and loved. I participated in the Special Olympics, earning trophies and ribbons that represented my dedication and hard work. Those accolades and moments of victory were tangible reminders of the pride I felt in myself and the way others saw me.

But what happens when that little girl with a disability grows up? What happens when the world no longer sees her as the "cute" child who can be admired for her perseverance? What happens when you're no longer featured in the newspaper for your wins, and instead, you’re left navigating a much more complex world where your differences are no longer met with admiration, but with indifference, misunderstanding, or even discrimination?

The Shift to Adulthood: Facing Hard Truths

As I entered adulthood, the realities of living with AMC shifted dramatically. Gone were the days when my disability seemed like a "cute" part of my identity that could be overlooked or celebrated in a childlike context. Now, as an adult—especially as a Black woman with a disability—I found myself in a world that often didn’t care to acknowledge me. The world is full of biases, and **healthcare disparities** are a harsh reality for many people with disabilities, particularly in marginalized communities like mine. As someone living with AMC, I wasn’t just dealing with physical limitations; I was facing a world that didn't always know how to care for or understand my needs.

But the struggles went beyond just healthcare. As a Black woman with a disability, I felt like I was constantly battling a dual challenge: dealing with systemic racism and the inequities that come with being both Black and disabled. It’s one thing to feel unseen because of your disability, but it’s another to fee8l invisible due to your race. The intersection of these two aspects of my identity often left me feeling overlooked and unheard.

The Frustration of Being Overlooked

And it’s especially frustrating when people make comments like, “I didn’t even notice” or try to minimize my experience. No, AMC may not always be as noticeable at first glance—my condition isn't always immediately visible or obvious—but I notice it every day. I notice it when I try to do simple tasks that many take for granted, like putting a cup in a cabinet, hanging up my coat, or even trying to work out and struggling to complete certain exercises. These are everyday activities that most people don’t think twice about, but for me, they come with challenges that are part of my daily reality.

So, while it may seem “invisible” to others, it is far from invisible to me. Every single day, I’m reminded of it in ways that can be frustrating, exhausting, and, at times, demoralizing. But the reality is, AMC is part of who I am. It affects my body, my movements, and my ability to interact with the world. It’s part of my journey, and I’ve learned to navigate life with it. But that doesn’t mean it’s not hard.

Now, Don’t Get Me Wrong

Now, don’t get me wrong, as a child, AMC wasn’t always seen as “cute” by my peers. In fact, I was bullied and put down. There were whispers behind my back and hurtful comments from those who claimed to be my friends—and even from family members. People I trusted sometimes treated me differently, making fun of my condition or acting like it was something to be ashamed of. The sting of those moments didn’t just come from the cruel words but from the fact that these people were supposed to be my support system.

In many ways, I was forced to learn that some people are jealous of your light. They see your resilience, your ability to shine through difficult circumstances, and it threatens them. Instead of supporting or understanding, they try to dim that light. That’s a painful truth to accept, but it’s a reality for many of us who live with a disability—and especially for those of us in marginalized communities. People who don’t understand your struggles often make it harder for you to express yourself, to succeed, or even to feel worthy of the same love and respect that everyone else gets.

Healing From Generational Trauma

As I grappled with my physical challenges and the external world’s inability to truly understand me, I also had to confront something even deeper: the **generational trauma** passed down through the years. Being part of a community that has faced historical oppression and marginalization, I realized that my journey was not just about overcoming the struggles of living with a disability. It was also about healing from the wounds of a past that was never fully acknowledged, never fully healed.

In this world, where it often feels like you were never meant to fit in, I had a pivotal moment of realization: **God did not design me to fit in—He designed me to stand out.** That truth hit me hard, but it also empowered me. I began to understand that my life and my story were bigger than me. It wasn’t just about my struggles; it was about the future—the children who would follow in my footsteps, who would one day face similar challenges when their disability is no longer seen as “cute” or inspiring but as inconvenient, misunderstood, or ignored.

A Purpose Bigger Than Myself

This awareness led me to a deep sense of responsibility. I realized that my mission—my calling—was not just about surviving life with AMC, but about paving the way for those who would come after me. The children with AMC, and other disabilities, who would one day find themselves in the same position I was in—adulting with a disability that’s no longer seen through a lens of innocence but through the hard, often unwelcoming, reality of the adult world.

I’m now focused on building spaces, like Empowered by AMC Inc., that will provide resources, advocacy, and a sense of belonging for those who, like me, may one day face that crossroads in life. When your disability is no longer cute or inspiring, and you have to navigate the world as an adult, it's essential to have a community that understands you. We need a platform where our stories are heard, our needs are met, and our experiences are validated.

I’m on a mission to make sure that no child with AMC ever feels alone or unsupported when they reach adulthood. I want them to know that their journey matters and that their voices are important—no matter how the world may see them.

Looking Ahead

So, as I continue this journey, I hold on to the truth that my life is part of a greater purpose. I know now that this mission is bigger than just my own experience—it’s about the collective journey of those with disabilities who deserve to be seen, heard, and cared for.

God’s design for me has always been to stand out. And standing out isn’t always easy, but it’s necessary. The children who come after us need a world where they aren’t just seen as “cute” or “inspiring” but as full, capable individuals with a right to live their best lives—no matter their ability.