Kevin Schaefer is a writer and community editor at SMA News Today, a website about the genetic disease spinal muscular atrophy. He lives in Cary, North Carolina, and is a graduate of N.C. State University. In this interview, conducted by email, Schaefer discusses his work at SMA News Today and offers advice on how others with SMA can explore careers in writing.
Q. Describe your job at SMA News Today. What is your typical workweek like?
A. I started working for SMA News Today a few months ago writing a weekly column. Recently I started full-time as a community editor. In addition to writing my column, I also write and edit content for our news section.
Our news page is divided into two main sections. There’s the research side, which covers all of the latest research news within the SMA community and information about clinical trials, and those articles are written by people with scientific backgrounds who have direct access to the literature. The other component is our social clips section, which I’m now helping oversee. This is where we post articles about managing life with SMA and also do profiles on SMA individuals.
Some of the articles I just wrote for this section include: “5 Tips for Going To School When You Have SMA” and “5 Tips for Supporting a Friend or Family Member with SMA.” My executive editor and my publisher really wanted a patient specialist like me to provide feedback on this content and take a more active role in producing content from here on.
That said, my day-to-day work kind of varies depending on what tasks I have to do. At the beginning of the week, I chat with my editors and our social media team to brainstorm ideas and decide which articles we’re going to run on our social media pages. Then if I’m not reviewing other posts, I’m usually writing.
So far I’ve been writing a couple social clips articles per week, and then I write my column on Thursdays. I also record weekly audio flash briefings of previously published content. These are basically mini-podcasts that anyone with an Echo device from Amazon Alexa can access. I just read an excerpt from one of my articles from that week and do an audio recording.
My next project is to produce a monthly podcast in which I’ll interview various people with SMA. I just scheduled my first interview, and I am working to get that first episode live on our site by the end of the month. So it’s a very multimedia job that requires me to use all of my journalism and communication skills.
Q. How do editing and headline writing work at SMA News Today?
A. SMA News Today is one of multiple websites that are owned by a parent company called BioNews. Each of these websites provides daily digital coverage of a specific neuromuscular condition.
BioNews has a vast network of employees from all around the world. I live in North Carolina and work from home, my main editors live in Texas, another lives in Canada, etc. As such, all of our communication is done digitally. We use an app called Slack, which despite the name is basically a professional version of GroupMe. We use it constantly to share ideas, ask each other questions and conduct conference calls.
So when I post one of my columns, I save it as a draft so my editors can look it over and make the necessary changes. I’ll post a placeholder headline which they usually like, but if they come up with something better, then they’ll change it.
Most of the editing so far has been of previously published content. One of my first tasks when I started this new role was to go through all of the old articles in the social clips section and provide feedback. Here I did change a few headlines and make some other suggestions for specific articles, and I just had a conference call last week with my team in which I shared my thoughts on this section as it is and also pitched ideas for future content. It went great, and I’m excited for the ideas we came up with together. All that said, every post is a collaborative effort, and we go through an extensive editorial process just like any other professional publication.
Q. What is your assessment of how news organizations cover SMA in general? How could they improve?
A. You know, there was a tragic story last year about a teenage girl who had a severe case of SMA and who made the decision to get rid of all life support. She died a few weeks later, and every media outlet was all over this story like a pack of wolves. Every one of them competed to produce the most heart-wrenching account of a story that was so grounded in ethical controversy. The message they all sent, however, was that SMA is nothing more than a terrifying disease, and that everyone with it is better off dead.
Yeah SMA is terrifying and difficult, but so many of us who live with it are living great lives and not letting it stop us. We also now have the FDA-approved treatment Spinraza, as well as an abundance of support within the SMA community. I was pretty enraged by the sheer laziness of these journalists who all took the same watered-down approach to this story, and I wrote about it in my school newspaper while I was still in college.
It’s getting better, but a lot of times the mainstream media either portrays people with disabilities as helpless objects of pity or as angels who are only here to inspire the rest of the world. We’re just people who have different challenges and obstacles than someone who is able-bodied.
In terms of good media examples, I’ve enjoyed reading The New York Times section on disability. This is a weekly series of essays by disabled authors, and I know of at least one SMA writer who has contributed to it. The last one I read was by a woman who wrote about online dating when you’re in a wheelchair, which I found really insightful. I also love watching the ABC sitcom “Speechless” with my parents, which does a great job juxtaposing humor with its more sentimental aspects.
In terms of what makes SMA News Today and BioNews stand out is that we’re the only publication producing daily coverage of SMA. The organization Cure SMA, which I’m also involved with, does post news stories, but their primary focus is raising money for research. SMA News Today posts both news articles and a wide range of columns. Including me we have four columnists right now, and we each bring something different to the table.
It’s pretty surreal working for this site. I always figured that if something like SMA News Today existed, I’d have to be the one to start it. Thankfully, that’s not the case! I love the job I have, but I could never handle the pressure or skill level of a CEO or publisher. Mike and Chris (my executive editor and publisher) have done a fantastic job building the company from the ground up, and I’m happy to be a part of it now.
Q. What advice do you have for other people with SMA who are considering careers in writing?
I encourage anyone who has SMA and who has an interest in writing to pursue it. The great thing about it is that you can do it from anywhere, and despite what people tell you, it can lead to a paying job eventually. You just have to stick with it and figure out what kind of writing you’re good at.
For me, I was a theater kid growing up, and my high school drama teachers noticed I had a knack for writing when I scripted monologues for my peers to perform. I tried my hand at writing longer plays and prose fiction, but it was always too amateur. Still, my parents and all my teachers were supportive, and I remember my creative writing teacher at the time observing how I’d always have a graphic novel on me every time she saw me. It’s fitting that I’ve now written several comic book scripts and am trying to break into the industry.
Then in college I majored in English hoping to become a screenwriter, and I kind of stumbled into journalism on a whim. Although my parents were both journalism majors in college and have years of experience working for newspapers, I went into N.C. State’s student newspaper office without an ounce of knowledge about reporting. I’m pretty sure I even spelled a source’s name incorrectly in my first article. I came in just wanting to write movie reviews, and I ended up staying there throughout my college career and even being the features co-editor my junior year.
I definitely wouldn’t have this job if it weren’t for my time at the Technician, and it was there that I wrote my first columns about my disability. Though I mainly wrote for the Arts & Entertainment section, my articles about how people with disabilities are portrayed in the media were some of my most well-received. The same thing happened when I tackled the subject in my fiction-writing classes. I realized how much I had to say about life with SMA and that I could convey my perspective through a blend of humor and serious essays. That’s basically the foundation of my column “Embracing My Inner Alien.”
So that’s how I got to this point, but there’s no secret formula. If you’re an SMA individual who wants to write, then start writing now and read every book you can. You don’t have to become an English major, but I do strongly recommend some form of higher education.
All it boils down to is your willingness to put forth the effort and getting your work out there. Start your own blog. Write a book or a screenplay. We need our voices heard and our stories told, and in this day and age it’s easier than ever before to build an audience. You can start your own blog for free or submit articles to different publications and acquire freelance work that way.
Heck, I’ve even done stand-up comedy a couple of times, and I’m now working on several comic book projects with some artist friends of mine. There aren’t many limits you have in terms of what you can do as a writer, and the term “writer’s block” is nothing more than a BS excuse to be lazy.
I’m far from a perfect example of an ultra-disciplined writer, but if I go a day without writing at least a page of something or an article, I feel guilty. If I’m ever feeling complacent with my writing output, I look at heroes of mine like Neil Gaiman and Scott Snyder and get back to work.