SMA Pride and Disability Language

I was wrapping up a week of vacation when I came upon a flood of posts on my Instagram feed about “SMA Pride Month.” Though August is traditionally recognized as SMA Awareness Month, a group of SMA activists and influencers feel it’s important to rebrand the name. By calling it SMA Pride Month, the language puts more emphasis on embracing the different facets of living with SMA, rather than focusing on raising awareness from a medical standpoint.

As activist @antiableiste explains in an Instagram post, “[T]his SMA pride month is about celebrating, respecting, and listening to people with SMA. [W]e don’t need you to be aware that our particular condition exists; we need you to value us, and that begins by seeing us as people instead of a medical condition.”

However, this effort did spark a fair amount of controversy on various SMA forums and Facebook groups. While pride is embraced by many, others feel that this term denies the pain that SMA has wrought upon countless families and individuals, particularly among those we’ve lost. I myself know all too well the anguish of losing loved ones in this community. This and other issues have led to a lot of online discourse, including some civil and some very heated debates.

The core question was this: Does pride or awareness better encapsulate the needs of the SMA community?

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I fall somewhere in the middle of this debate. Anyone who knows me knows that I am a big proponent of Disability Pride and that I don’t view my disability in a negative context. Still, I don’t personally have a problem with the term “awareness.” For me, awareness has opened doors for both medical advocacy and giving people in the SMA community a space to share their stories. I don’t believe advocating for medical advancements and advocating for disability rights and inclusion have to be mutually exclusive.

For the third year in a row, I’m overseeing a campaign called 31 Days of SMA. The goal of this project is to give a diverse range of people in the SMA community a platform to share their stories. We have featured adults with SMA, parents, siblings, spouses, and medical professionals, all with unique backgrounds and viewpoints. This year, my colleague Katie Napiwocki has worked with me to assemble a fantastic team of contributors from around the globe.

Each time I do this project, I always tell contributors to be honest in their narratives. Though the majority of the stories tend to be positive, we’ve also had people write about grief and loss. SMA affects people in different ways, and people need to have the space to use whatever language best suits them.

Whether people prefer to use SMA Pride or SMA Awareness as the terminology for this month, my hope is for there to be unity in this community. Right now, there is so much room for progress, both in the medical sphere and in the realm of disability rights. New SMA treatments are in development, and the proposed SSI Restoration Act of 2021 would be a game-changer for disabled people in the United States.

Let’s keep fighting for change, together.

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