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

When I finished my first novel, I knew better than to hope for success. The publishing industry is competitive, especially for marginalized authors who write about their lived experiences. Few writers strike gold on their first completed project.

If you'd asked me at the time, I would have said I was prepared for failure. And I was! But that didn't stop the rejection from hurting. I love everything I write, but that book was especially important to me, as it featured the disability representation I'd wanted since childhood. It was the culmination of a decade of striving — and it went nowhere.

The therapist in me recognizes the shift in mindset as the result of failure. If I hadn't abandoned my book, I wouldn't have questioned my purpose as a writer. I wouldn't have realized that, while writing is difficult, especially in a world that often devalues disabled perspectives, it is also worth it.

I wouldn't have rededicated myself to my craft or written a book that blew my previous one out of the water. Would it have been easier without the failure of rejection? Absolutely. But would it have been as meaningful? Probably not. And that — that's where the magic is.

Lots of people know me as a protective mother. It's not a bad thing. Sometimes, I have to be the mama bear to get things done for my child who lives with medically complex needs. It wasn't until my son Jack turned 6 years old that I realized he could really fend for himself and express his own needs. As his mom, I want to empower him and encourage independence.

Today, Jack is 7 years old and lives with SMA Type 1, as well as mild autism disorder. The combination of SMA and autism didn't allow him to have a voice until he was about 4 years old. Jack has worked so hard to build his voice through help from speech therapy, his educational environment, and our family.

One major takeaway from our conversations is that Jack needs to establish independence early on, so he can be even stronger when he reaches adulthood. So, with the help of our home support system, we are teaching Jack about the power he holds over his own life.

It was about a year ago when my eyes really opened. We were at the hospital, and Jack was being prepped to start an IV infusion. The nurse was looking for a vein on his right arm. Then Jack suddenly told the nurse that the better arm was the left one and to please not use the loud thing. He meant the jtip, which is a needle-free anesthetic and is very loud. Jack does not like the sound of it and sternly voiced his own concerns. It made me so proud to see that he could advocate for himself.

At school, Jack can get emotionally and physically fatigued from the busy school day. He knows that he can simply raise his hand to call his teacher and ask for a break. Often, he needs mental breaks. He's free to roll to the sensory room for a few moments to refresh himself or to have a snack. At home, he will ask for help when he can't reach a toy and is very good at communicating exactly what he wants to eat.

I watch my son live with SMA, and I see it's a daily struggle to get all his basic needs met. He needs help with coughing, showering, toileting, changing his clothes, taking his medications, preparing food, and the list goes on. Before Jack had a voice, we used to do things as a routine, saying it's time to do this or time to do that. I have learned that it's better to encourage him to tell us when he needs something. As a protective mom, I used to think I knew Jack better than he knew himself. The truth is that he really deserves more credit. That's something I learned from my many opportunities engaging with other members of the SMA community.

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.