This SMA Awareness Month, I’m finding different ways to advocate

If you’d asked me a year ago what my plans were for SMA Awareness Month, I would’ve come back with a laundry list of items, from Instagram Reels to the Minnesota Walk-n-Roll event put on by Cure SMA.

This year looks a little different. Part of it is burnout, but most of it is that I’m busy. SMA is taking up most of my bandwidth these days. To put it simply, I don’t have the time or energy for advocacy right now.

My changing views

The past several months have taught me to broaden my understanding of what advocacy is, because let’s face it, not all of us are going to hit the TikTok jackpot. Some people are better at it than others. There are so many factors that play into success on social media, and while some of them are under our control, most of them aren’t.

Living with a rare disease like SMA is hard enough. I don’t think we need to introduce another obstacle into the mix. We as a community have enough to deal with, and life is too short to worry about how we measure up in terms of advocacy.

I love advocacy work. I want it to feel liberating, not life-stealing. And I want our definition of advocacy to recognize that our ability to engage fluctuates throughout our lives. Sometimes you have a lot of energy and are able to put a lot of content out into the world. Sometimes you have an energy deficit and have to turn inward to recuperate. Sometimes our illnesses have to take priority. No one should beat themselves up for what they are or are not able to contribute.

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Reframing our definition of advocacy

As we celebrate SMA Awareness Month, I invite you to revisit the definition of advocacy. A lot of advocacy work is necessarily public. You have the people who are posting on social media, hounding their lawmakers, and otherwise pushing for a world that honors and prioritizes disabled folks. That is beautiful and I applaud them. (I also want to ask them how they manage to post consistently on Instagram, considering I can barely manage a single Reel without burning out.)

Then you have the people whose advocacy work is maybe not as obvious. People who educate medical professionals about SMA at every appointment. People who exist in the public sphere, not as an advocate but as someone who just so happens to have a rare disease. People who show up as their gloriously disabled selves and, in doing so, force the world to accommodate them.

That is just as beautiful — and just as necessary. In both scenarios, our advocacy goals are achieved.

More people become aware of SMA.

More people recognize just how ableist our world is.

More people realize that they can advocate, too. By contacting their representatives. By giving accessible parking spots a wide berth. By hosting parties and events at accessible venues — and if a venue is not accessible, asking the people responsible why.

I’m in a wintering season right now. I haven’t posted on social media in months, and I don’t know when that’s going to change. All my energy is focused on surviving all my medical appointments.

But that’s the thing. I may not be advocating in the way I usually do, but I am still advocating. By writing these columns twice a month. By editing my book about a girl who, when faced with the possibility of becoming nondisabled, chooses her own imperfect body. By showing up to appointment after appointment, explaining SMA, showing medical professionals exactly what it means to live with a rare disease.

It’s all advocacy. And it’s all important.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.