Inspiring stories from those living with SMA, ranging from topics of accessibility, dating, individuality, work and adulting.

When I perform at speaking engagements, people often ask what my parents did to set me up for success in life. The answer is simple: from a young age, I was encouraged to be a self-advocate. That's a fancy way of saying they taught me early on how to voice my needs and stick up for myself.

My parents faced the daunting task of teaching their children skills of self-advocacy and responsibility. After all, their main goal of parenting is to set up their kids with the tools, resources, and values for a lifetime of satisfaction and success.

As a young child, I was encouraged to go out and play with the other children in our neighborhood, a process that involved introducing myself and showing my new friends how we could play our favorite games and include my wheelchair in the fun. My parents let me get dirty, make mistakes, and ultimately get into trouble (occasionally!) just like every other kid. In this way, I learned how to help kids understand my disability and realize I was no different than them.

In school, my parents and teachers included me as an equal partner in planning my disability accommodations. They urged me to voice my desires during Individualized Education Program (IEP) meetings. As long as those desires aligned with safety and common sense, the adults deferred to my opinion when crafting my accommodation plan. For example, in 4th grade, when I decided I no longer wanted a school-supplied personal attendant all day, I was responsible for showing the administrators how and why my friends were better options to be my helpers in class. This taught me how to argue, reason, and make smart decisions for myself.

As a teenager, there were times when I hated the "extra" responsibilities. My parents taught me how to make medical appointments, keep a schedule for my life, talk to insurance representatives, and more. I remember having big arguments with my parents when it was time to schedule an appointment, but I just wanted to be playing video games.

Looking back now, as a 30-year-old, I so appreciate my parents for giving me the skills and confidence to manage my life and care. I felt a strong sense of personal autonomy well before many of my nondisabled friends, and I largely attribute that to how my parents raised me. The skills and tendencies I developed throughout childhood turned out to be incredibly useful in my adult life (and attractive to partners as an added bonus). Today, I feel completely comfortable managing all the myriad responsibilities of adulthood, especially factors related to having SMA. Thanks, Mom and Dad!

I volunteer for disability-related organizations because advocacy is important to me. I would not be where I am today without the help of advocates.

When I was a child, I saw my mom stand up for me so many times when there were issues regarding accessibility or being treated fairly. I always saw my mom go out of her way to connect with other parents who had a child with SMA, and I particularly remember my parents always begging me to become pen pals with other kids. Although I witnessed all of this, it wasn't until I turned 18 that I realized I needed to start advocating for myself and connecting with others who have a disability, like me.

If no one stands up for me, I feel like I could fall apart from the frequent circumstances of inequality and negativity I face. For example, someone can talk to me with an unkind tone if I let them, or they can dismiss me as ineligible to squeeze into the school elevator unless I speak up. I can also miss out on opportunities that will help me in the long run, such as physical therapy, which would cause me to lose mobility function if I do not seek the help I need. There can be financial, physical, and certainly emotional categories of mistreatment I can likely endure if I do not advocate for myself. Even worse, I can endure all of these in vain because I did not do a thing about it to help the next disabled person avoid the unique or common situation.

With music and coding as my focus, I come across chances to improve accessibility and inclusion in mostly those realms. Community encompasses various focuses, and I always want to be a part of that.

I have volunteered for decades by fundraising, cold calling for events, writing original music, and performing pro bono. I have recorded audiobooks for the blind and those who benefit from audiobooks. I have volunteered with disabled children, presenting motivational speeches at schools (from elementary to higher education), and at hospitals, businesses, nonprofits, and government organizations. Most recently, I have fought for disability inclusion in the music industry. There are many opportunities to build your community through volunteering and so many ways to help.

I took on leadership roles in an effort to make changes throughout New York City, and I am thankful to know that they have paved the way for more advocacy via the community.

Although it seems simple, each of the above moments is meaningful. I balance difficulties with the knowledge that when I advocate for myself, I am also advocating for others as well. I have learned always to do my best and give as much as I can of myself because I believe my efforts will make a difference.

It's strange. We work long hours for companies that can easily replace us. If we're lucky, we like what we do and receive a fair wage. If not, we do it anyway.

We choose joy.

Sometimes after work, we continue the work required in our family. We respond and act quickly when our child is in distress. We don't sleep when our child is in respiratory distress. Yet, we listen when others tell us how tired they are.

And we choose joy.

Life with a medically complex child often forces us to slow down. Sometimes, life slows to a complete stop. These times are difficult as we watch the world around us move on while we stand still.

But still, we choose joy.

A trip to the zoo means loading more medical equipment into our vehicle than exists in an average hospital room. Suction machines, spare batteries, trach vents, pulse oximeters, nebulizers, etc. The list goes on and on. For our family, it includes transporting two power chairs in a borrowed pickup truck (to be driven separately) with a ramp that works but is super sketchy because the chairs weigh 350 pounds each. By the way, a trip to the grocery store requires the same load. We're spectacles of society, sometimes pariahs.

Time and again, I meet other fathers in our extended community, from all different backgrounds, all different professions, with all different anything - you name it. We not only share our experience of having a child living with spinal muscular atrophy (SMA), but also we share our joy. Not all of us for sure, and not all of us all of the time, but enough that I'm compelled to talk about it. Maybe some of us are faking it, but I'll receive it all the same. Our joy is what keeps us connected to our family and to each other.

Our joy inspires me.