The Recent Rare Disease Panel Made My Year
Like most things when it comes to Sherry, it was a no-brainer.
A few weeks ago, I woke to a string of messages in our shared Discord server. An SMA News Today columnist, she’d been asked to participate in this year’s Rare Disease Day (RDD) panel, organized by the site’s publisher, BioNews. That was my first time hearing about the event, so I didn’t know much about it, but I knew instinctively that Sherry would be perfect for the panel. Not only is she versed in all rare disease advocacy, she bolsters her calls for intersectionality by pulling from personal anecdotes.
I wasn’t just happy for my best friend. I was proud.
I wasn’t expecting the request that ended her string of all-caps messages. Because Sherry lives in Singapore, there’s a good 14-hour time difference between there and the U.S. That combined with her chronic pain and fatigue means it’s difficult for her to participate in live events. Sherry explained her situation to the panel’s organizer, Liza Bernstein, who suggested they have someone speak on her behalf. I immediately came to mind.
It wouldn’t require much on my part. Sherry would write her answers ahead of time — all I had to do was show up the day of the event and read what she had written. Easy enough! And I was more than happy to do it.
I’ve always been impressed by BioNews’ commitment to accommodations. Few publications are so willing to pay disabled folks for their time and expertise. I’ve held several positions at BioNews over the years, and I’ve never not felt like a true employee. It didn’t matter that I was chronically ill, that my work hours depended on my ever-evolving schedule of medical appointments. BioNews has always worked with me to guarantee the best possible outcome.
Still, I was shocked by Liza’s willingness to work with Sherry to ensure her participation. It spoke to her dedication not only to the rare disease community, of which she is a part, but also to equity. Liza knew the panel would benefit from Sherry’s voice and was willing to do whatever it took to make that vision a reality.
The panel itself was just as incredible. I’ve met a number of columnists through my work at BioNews, but there’s something to be said for coming alongside them as a fellow patient in celebration of RDD. We weren’t preaching at the audience; we were sharing our stories, with the hope that our vulnerability would spark change in and beyond our community.
Because I was speaking on behalf of Sherry, my participation looked and felt different. For one thing, I wasn’t worried about getting my point across — all I had to do was stick to the script and do my best to communicate Sherry’s intent. But I also had the opportunity to slow down and really absorb what the other panelists were saying.
I have complicated feelings about “inspiration porn,” but that’s exactly what the panel was: inspiring. On Feb. 28, folks from all walks of life — race and ethnicity, gender identity, sexual orientation — came together in a moment of community. We didn’t need to assert our right to be there, we didn’t need to advocate for ourselves, because the event was designed with our needs in mind.
Our stories were the point. And that is so damn rare.
I didn’t get to participate in the way of other panelists. Sherry had the spotlight, as she should have; I was merely there to read her words. But I felt part of the community. In many ways, Sherry’s stories are my stories. When her voice is uplifted, mine is as well, and vice versa. That’s what community is: recognizing that we’re all connected, that one person’s well-being is inextricable from everyone else’s.
To say the RDD panel was special is missing the point. Of course it’s special! But it shouldn’t be. That kind of accommodation, that kind of humble fellowship, should characterize the way we go about advocacy. It should be the norm.
If you have the time, I highly suggest watching the panel recording — you won’t regret it. But more importantly, I want to thank everyone who was involved in the event, especially Liza, who worked so tirelessly to bring the dream to fruition. I think I speak for all of us when I say that we were so very touched.
The RDD panel was a once-in-a-lifetime opportunity, and I am so grateful to have contributed. Thank you, thank you, thank you.
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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.
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