Sharing the Journey with Jeneva: Amy Silverman & Sophie Stern on Journalism & Disability Representation

Sophie Stern & Amy Silverman [image description: A young woman with Down Syndrome and her mother work together at a laptop in their kitchen. The mom has long blond curly hair and glasses and the daughter has her blond hair pulled back and also wears glasses. A vase of daisies is in front of the computer.]

Amy Silverman is a writer, editor and teacher. Her work has appeared on the radio shows This American Life and Here & Now, and in local and national publications. This year she worked with ProPublica's Local Reporting Network on an investigation into services for people with intellectual and developmental disabilities. She lives in Tempe, Arizona, with her husband Ray Stern, a journalist, and daughters Annabelle and Sophie. Find her at amy-silverman.com.

Sophie Stern: I am a senior in high school in Tempe Arizona. I perform with detour company theater and I dance at Dance Theater West and at my school I do theater at my school. I did musicals. I did Annie and Hairspray. I also do theater at detour Company theater. I have been in detour since 2012, we did a lot of fun shows and I have three pets and my sister, dad and mom. I also have a dance class on zoom its called Sophie's days of dance and that has been fun.

Tell me about your family.

Amy: We are a family of four. Ray and I met in the Nineties, we are both journalists and both live like college students -- controlled (if we are lucky) chaos, lots of projects going all the time. Annabelle, 19, is a sophomore at Reed College in Portland, Oregon, and is leaning toward a dance major. She also loves music and art. None of us had ever really met anyone with Down syndrome before Sophie was born (she's now 17, although she'd be quick to tell you 17 and a half) so she just grew up as herself. We didn't know what to expect so we raised her like Annabelle. Of course they are very different -- but also very similar. Sophie also loves to dance (my mom, their grandmother, runs a dance studio here in Phoenix) and is really into musical theater. Sophie wants to be a dance teacher when she grows up. She's also really into YouTube, High School Musical the Series (god help me) and collects both paint brushes and mechanical pencils. She recently dyed her hair blue (herself, that was a bit of a surprise). 

We really love Disneyland, and travel in general, although we are split on the topic of camping (I'm very much against)s. We all love music and make Spotify playlists for each other. 

Sophie: My family consists of four people: me, my sister, Annabelle, and my mom and dad. We like to have dinner together, go on family walks and go to the mall. Right now, we like to watch Christmas movies - our favorites are “Elf” and “Love Actually.”  I like to stay busy! I like to go places, do things and see people. I’m a good sister. I’m also calm, friendly and pretty! I like to watch YouTube, go shopping, dance and take photos. 

Tell me about Sophie's medical needs and disabilities.

Amy: Sophie has Down syndrome, which impacts her in every way -- both big and small. People with DS have different physical challenges. Sophie has a common heart defect and had open heart surgery twice (both at 4 months and 4 years) and she has hypothyroidism. We are a short family and people with DS tend to be short -- so she's doubly blessed there. :) 

Sophie: I was born with Down syndrome which means I have an extra 21st chromosome. I had heart surgery when I was little. 

You're an accomplished writer and journalist, having published in The New York Times, The Arizona Star, ProPublica, and many more. You've also written a book about your life with Sophie, My Heart Can't Even Believe It, which I dearly loved. How has your journalism practice changed since Sophie came into your life? And what does Sophie think of your writing?

Amy: (Thank you for the kind words!) I'll let Sophie answer how she feels about my writing, but I can say that she's a big fan of book events and one of the best things was when she asked me to come speak to her eighth grade classes for career day -- about the book. Turns out, her classmates had no idea that she had Down syndrome or what it is and they'd been in school with her since kindergarten. That was eye opening.

My journalism has definitely changed since I had Sophie. I think aging changes you, too, and I've certainly had my share of that! But the biggest change for me was that before I had Sophie I considered myself very open minded and a champion of social justice but I'd never considered disability as a part of that. I'd done almost no stories about disability. I set out to change that, by creating a blog when Sophie started kindergarten and doing some reported personal narrative pieces, that's my personal jam. 

Things also changed when Sophie was born because my then-bosses at the alt weekly where I worked insisted I take an editing job and give up a coveted staff writer position. I was not happy about it at the time but it wound up being a great thing -- Sophie aside. I have also been teaching for quite a while and I think/hope the combination has made me more compassionate and even helped my own writing. 

Sophie: I think she’s a really good writer. She wrote a book about me and I love it. 

The Silverman-Stern Family: Annabelle, Sophie, Ray & Amy [image description: A family poses at their front door, framed by green leaves of adjacent bushes.]

You've recently been awarded a Knight Visiting Nieman Fellowship from the Nieman Foundation at Harvard. Can you tell us about that and the questions you're exploring about persons with developmental disabilities? I know that you're studying the use of "plain language" in journalism--would Sophie tell us a little bit about her experience reading the news?

Amy: Yes, I'm super excited for that fellowship, it had to be put off til next year but I've been working a lot with ProPublica this year on ways we can better cover people with developmental disabilities, and that led to a conversation about how to make the news more accessible, as well. (And not just stories about bad things that happen to people with disabilities, although that happened to be the topic this time.) 

So I feel like this work this year has helped to prepare me for what's coming. One thing I'm exploring is the role of personal narrative in journalism about people who don't typically get a voice. So we might be doing some storytelling events around this. 

Sophie: My dad tells me about the news at dinner. 

What are the top three things journalists can do to make their writing more accessible to people with developmental disabilities (DD)? 

Amy: Write for them, not just about them. Include people with DD in your stories. Interview them, describe their lives, try to let their voices stand alone. That's not always possible and seldom easy and it involves getting more comfortable -- I was always afraid of offending someone by saying or doing the wrong thing. It takes practice, like anything. 

Make sure the work is accessible for people with hearing and/or vision loss, and also for people who need material presented in a linear style. We are still super early in the discussions around plain language translation. It's tricky -- you really can't automate it, even the plain language translations need to be fact checked and lawyered. To do it right it's time consuming and expensive. But I feel proud that we showed it can be done. 

Use photography and illustration to further the story. For this project his year, we had artists from MAKE Studio in Baltimore illustrate our stories. (They work with artists with disabilities.) The photography is equally impactful and the photographer (who does not have a disability) was super sensitive to her subjects and did some beautiful documentary style photography.

For me, the most important thing is capturing what life is really like -- it's not always inspiration porn, it's not always horror stories. Just as for anyone, it's about the in-betweens. 

How have you engaged Sophie in self-advocacy? Sophie, what do you think about advocating for yourself? 

Amy: Sophie has struggled on and off with having Down syndrome since she was 8, so sometimes she likes to advocate and sometimes she doesn't, which is understandable. Her advocacy is often a second thought -- she just lives her life. She teaches a dance class on zoom because she wants to, not to educate people, though I think that's a nice byproduct. 

I'll let her tell you the story about how she advocated for herself earlier this year during her high school musical, but I'll also give you the link to a poem she wrote about it: “The Law of Words.”

Sophie: I’m good about advocating for myself. I think it’s important to do because that way other people don’t have to do it for me - I can do it myself. 

How has advocacy given meaning to your life and Sophie’s? 

Amy: Recently my sister asked, "What would you have written about if Sophie hadn't been born?" It's a good question. Nothing as meaningful, that's for sure. 

I learn new things every day, not just as a journalist but as a parent and one definitely informs the other. I don't consider myself an advocate -- journalism is about telling the truth no matter what, and sometimes that doesn't fall into line with being an advocate. If my work educates people (particularly people who have no interest in developmental disabilities to start with) I'm thrilled. If it brings about needed change, awesome. 

As Sophie grows up I find myself drawn to figuring out meaningful ways for her to be a part of this work, so it's not just about her. For example, she and I are collaborating on a YA novel about some experiences she had in middle school. 

Sophie: It makes me feel good about myself and my abilities, and it has helped me do things I wanted to do. 

If you could define advocacy in a single sentence, what would it be?

Amy: Living your truth out loud for all to see. 

Sophie: Advocacy means when you stick up for someone. 

Note: Sophie Stern composed her answers to the interview questions in conjunction with Sarah Hales, her speech therapist. Sophie wrote her bio on her own.

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Jeneva & her son Rob [image description: A mom with short blonde hair wears a blue scarf & grey dress. Her son is seated in a wheelchair with an orange shirt & orange baseball cap.]

We hope you enjoyed this installment of Sharing the Journey with Jeneva, a recurring feature on our Little Lobbyists blog. Through these interviews we will share the advocacy journeys of caregiver/parents and disability self-advocates, inspiring us to forge ahead together. Send an email to Jeneva if you have any questions you'd like to see, or if you'd like to be interviewed for a future installment of this series! 

Jeneva Stone is the manager of the Little Lobbyists blog. She's worked as a teacher, a government editor, and a Hill staffer. Jeneva is also a writer, with numerous publications in poetry and nonfiction. She lives with her son Robert, who has complex medical needs and disabilities, her husband Roger, their two cats and a dog in Bethesda, Maryland. Her second child, Castin, is currently a student at Middlebury College.