Advocating for others is how I’m meant to live

Connie Chandler is a social media manager and writer from Fort Wayne, Indiana. She has spinal muscular atrophy (SMA) type 2 and works alongside her brother for the nonprofit We Carry Kevan.

As an adult who has grown up with SMA, I’ve learned the necessity of being my own advocate. Through some challenging seasons, I have become adept at articulating my needs and being persistent in getting satisfactory results, whether it’s with caregivers, doctors, social services, or insurance companies.

Connie Chandler is the director of family engagement for We Carry Kevan.

I like to think that I’m blazing trails to improve the world for the next generation, but mostly it is about me and my quality of life.

To be honest, I do not enjoy self-advocacy. It is stressful, overwhelming, and time-consuming, and it feels very lonely, too. I’ve come to believe that, while there are circumstances that call for self-advocacy, it’s not the primary way I’m meant to live.

When I spend all my limited energy on trying to get my own needs met, I don’t have anything left over to spend on considering the needs of others. When I think I’m my only hope for getting what I need, I miss a valuable opportunity to invite others into the reality of my life and bear a heavy weight I shouldn’t carry alone.

On the flip side, I love advocating for others; it’s something I’ve passionately done since college, serving in several ministries and nonprofit organizations, including my current job as the director of family engagement at We Carry Kevan. It’s more than fighting for an idea; it’s speaking up for people who have names and faces and personalities, with whom I’ve spent time, whose stories I’ve heard, and for whom I care deeply.

Chandler poses for a photo with some of her best friends and advocates in Fort Wayne, Indiana.

I’ve realized that when I invest in real friendships, when I genuinely care about others’ circumstances and seek to do what I can to help them, they reciprocate and become some of my best advocates as well as best friends. They start to see the world through a lens that takes me and my disability into consideration: parking spots, group activities, and even mealtime utensils. They come to my aid and defense, so I don’t have to, and so I can save my strength to aid and defend them in their moment of need.

When our advocacy becomes others-focused, we get to be both participants and recipients, and experience its great power to bring joy and change to the world.

In recognition of Spinal Muscular Atrophy Awareness Month in August, the Faces of SMA campaign features a multimedia series with written essays and video interviews highlighting the real-life experiences of people affected by SMA in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #FacesofSMA, and check here for more.