Four years ago, my friend Hannah and I were sitting in a bar in Old Town, Fort Collins participating in the customary idle chat of any two new friends. Naturally, the topic of my disability came up several times. We chatted about my caregivers and what it’s like to live with SMA, as well as the larger disabled community as a whole. I explained how, for so many years, these muscle-debilitating diseases had been categorized as pediatric – regardless of the blooming population of adults living with them. She asked me why and I speculated it was because donors are always more inclined to give to cute kids rather than adults. That said, I thought the time was right for the voices of the young adult community to finally be heard.
Of course, I told her about MDA and my experience with the organization since she wasn’t familiar with the work it did. We talked about how most of MDA’s rhetoric focused around children, like I said earlier, and I explained that was why I made a decision to almost disassociate myself from the organization completely when I started college. I didn’t feel like the organization represented the needs of the young adult community or, better yet, my community. I remember telling Hannah the time had come for MDA to start recognizing the adults they serve.
Then it hit me. If MDA really wanted to demonstrate its support for young adults, it should choose an adult National Ambassador who can advocate on behalf of that demographic. After pausing for a moment, I said “I think I could do that job well.” Little did I know that I would become that first adult National Ambassador and that I would one day find myself be writing a “farewell” blog at the end of my two-year term. But that’s where I am today.
When I recall the moment I was offered the role, I remember thinking the time would fly by – and it did. All good things must come to an end, but that doesn’t make it any easier. Part of me wants to stay in this role forever and another part knows I’m ready to move on.
These last two years have been incredible. The best part was getting to connect the dots between, families, young adults, MDA staff, donors, partners, researchers, clinicians and the public. All I had to do to was share my story and the stories of my peers. I had the chance to shine a light on the humanity of disability. I got to follow my dream of normalizing the concept of disability and promoting inclusion and diversity across all aspects of life.
It was an honor to be given the opportunity and platform to speak on behalf of MDA. Honestly, people underestimate how this position helped me; it changed me just as much, if not more, than I changed MDA.
I’ve known for a long time MDA is an amazing organization. I’ve never been more proud of the work we are doing. As I’ve said many times before, there has bever been a more exciting time than right now. The advances made in the last few years are undeniably groundbreaking and getting to see the work being done at all levels of the organization was empowering and moving. I’m not lying when I say that the men and women of MDA work tirelessly every day to make good on the promise that treatments and cures will be developed sooner rather than later. The progress we’ve made has not come easy, but it’s here and it’s only the beginning, folks.
I leave my post happy knowing MDA’s work to help people living with neuromuscular diseases continue to live longer and grow stronger won’t end with my term. I’m confident the organization is going to further its mission of helping individuals and families live unlimited. And I know the ambassadors to come are going to carry on in a way that will make all of us, especially me, beam with pride.
I’m not sure what my next chapter in life will be. All that’s for sure is, up until this point, my life has been nothing short of an adventure. Whatever the next journey I am to embark on, it will keep me on the edge of my seat. The unknown is scary and invigorating. I know that I want to continue advocating for my community, shining a light on the humanity we all share. How I will be doing that, I don’t know. I’m just as excited to find out as you, but I’ll be sure to keep you posted.
Remember, your ability doesn’t define your humanity.
Help kids and adults like Joe continue to #LiveUnlimited
