IDD . Zainab Edwards gets joy from ice skating . She struggles after she ’ s had a seizure . Both things are true .
I ’ m not saying I ever achieve this – but my goal is to tell nuanced stories that capture what real life is for a population that remains largely hidden . Even in 2022 , more than two decades since the U . S . Supreme Court ruled that people with IDD needed to be included in the community .
Spoiler : They are not included . Not in meaningful ways . If they are , it ’ s rare .
But just writing these stories isn ’ t nearly enough – I learn that every day , in different ways .
Sophie has taught me something I should have understood a long time ago , that people with IDD have their own narratives . After running a live reading series in Phoenix for five years , I started a storytelling program designed specifically for people with IDD .
With other journalists and academics , I ’ ve explored ways to make the news more accessible to people with IDD . A group of us pushed successfully to have a
news story Public Integrity , and now we ’ re doing academic research to figure out how to take that work to the next level .
I ’ ve also learned that , like the rest of us , every single person with IDD is different . Not everyone can share their story in a traditional way , or consume the news the way others do . That makes reporting challenging – but not impossible .
It also means that – despite concerns from some in the disability community – it can be necessary to interview family members and others close to a person with IDD , particularly if the person cannot communicate . This gets really controversial , really fast .
I ’ m grateful to be doing this work , to have the space and grace to experiment with reporting and accessibility methods , to hear the stories of so many people with IDD and those around them . And hopefully , to make some good trouble .
But mostly I ’ m grateful to Sophie , who continues to be my teacher .
Amy Silverman is a journalist , teacher and memoir writer based in her hometown , Phoenix . She is executive producer for The Show , an original production of KJZZ , the Phoenix NPR member station . Amy ' s work has appeared in local and national outlets including ProPublica , Literary Hub , This American Life , The Guardian and The Forward . Her book , My Heart Can ' t Even Believe It : A Story of Science , Love and Down Syndrome was published by Woodbine House in 2016 . Amy ' s work has been supporetd by the Economic Hardship Reporting Project and the Fund for Investigative Journalism ; she ' s done fellowships with the Nieman Foundation at Harvard and the Annenberg Center for Health Journalism at USC . She ' s a three-time winner of the Arizona Press Club ' s Journalist of the Year Award . Amy is married to Ray Stern , state politics reporter for The Arizona Republic . They have two daughters .
This article was originally published by The Center for Public Integrity . Read the originalarticle
here .
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