CENTERING STORIES ON PEOPLE WHO MATTER
Amy Silverman
Sophie Stern
Becca Monteleone
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SOPHIE’S STORY
To Read:
WHY DON’T WE HEAR MORE STORIES LIKE SOPHIE’S?
PEOPLE WITH I/DD SHOW UP AS…
SOMEONE ELSE’S “GOOD DEED”
PASSIVE VICTIMS
SO, WHY IS THIS A PROBLEM?
WHEN WE DON’T UPLIFT THE VOICES OF PEOPLE WITH I/DD, WE SEND THE MESSAGE THAT OTHER PEOPLE CAN SPEAK FOR YOU OR “KNOW BETTER”.
WHY DON’T WE BELIEVE WHAT PEOPLE WITH I/DD SAY ABOUT THEIR LIVES?
People use excuses to not listen to people with I/DD. Those excuses include:
IT’S A JUSTICE ISSUE
If we don’t let people with I/DD speak or don’t believe what they say, it can cause harm. Historically, this has caused:
All Of Our Stories Matter.
In January 2020, Amy held a storytelling bootcamp for teens – including her daughter, Sophie, who has Down syndrome. Sophie wrote a poem called The Law of Words. This got us thinking – about why Sophie was the only person with IDD in the group. About how important her story and others’ stories are.
The Law of Words by Sophie Stern
What is going on with the laws of words
The words are kind to the people with disabilities
The people the words
Words speak to yourself
And what they say
The words can be bad
What is the law of words
The words like the r word
The musical that my highschool did was Hairspray
I went to the directors and say words can be bad take one out
The laws of words can be tough in some ways how they think how they wright
The laws of words how they explain to the world
How i control with the laws of words they have the words in the life of words
How the words can’t talk to yourself use the mind to you and the world behind you and have the
law of words to yourself and how the life comes and goes and the law how the people say
words in the law of words when you think the law of words you have the mind set in the future and detour has words that can be good we just did Rent and words in the show can be risky in the laws of words can be hard for people with down syndrome to be thoughtful to yourself and
other people can hear the air of words they listen to the laws of words and how they listen to it and they have the rights to the words of the laws of words and how they think to yourself
confidence to the mind these words can be bad what i think what is in my head it hurts what is this pain in my body WHAT IS THIS in my head in my body in my heart ugg what is this pain?
Your words, my words our words. What is this pain in my body and my head how do i get out of it what feelings do you have in the laws of words what is this feeling how do i get out of here
JANUARY 2020
Amy Silverman joined Beena Raghavendran and others at ProPublica for a year-long journalism project about the lack of services for Arizonans with intellectual and developmental disabilities.
Amy, Beena and others immediately began planning reporting based on being able to interact with sources in person.
THEN CAME THE PANDEMIC…
We needed to find new ways to report and tell this story – and really connect with our sources.
Image Credit to Annabelle Stern
MAKE STUDIO
Shoshana Gordon, another journalist we worked with, hired MAKE STUDIO in Baltimore to illustrate the people in the story.
And we asked people to join us on Zoom for a storytelling workshop and performance for and by people with intellectual and developmental disabilities.
Image Credit to Rosie Eck, Erika Clark, Tony LaBate and Louis Middleton/Make Studio for ProPublica
THEY SAID YES!
We had been working with Becca Monteleone on the storytelling workshop.
When we learned she knew how to do plain language translation we asked ProPublica to bring her in her to translate the whole project.
They said yes!
TRADITIONAL LANGUAGE
This is traditional language.
She Needs a Device to Communicate. The State Has Kept it From Her for 18 Months.
Emory, 11, has cerebral palsy and uses an augmentative communication device to talk to her friends. One day, her mother turned it on and smoke came out. “They make it so hard for families that they give up.”
Image Above:
Emory Webster, right, and her mother, Adiba Nelson, in their home in Tucson in October.(Mamta Popat/Arizona Daily Star)
Image Below:
Emory Webster loves to paint and hang out with friends. (Erika Clark/Make Studio for ProPublica)
PLAIN LANGUAGE
This is the same headline and paragraph translated to plain language.
She Needs a Device to Talk to People. Arizona Has Not Given It to Her. It Has Been 1.5 Years.
Emory is 11 years old. She has cerebral palsy. She uses a device to talk to her friends. One day, her mom turned it on and smoke came out. She said, “They make it so hard for families that they give up.”
Image Above:
Emory Webster, right, and her mother, Adiba Nelson, in their home in Tucson in October.(Mamta Popat/Arizona Daily Star)
Image Below:
Emory Webster loves to paint and hang out with friends. (Erika Clark/Make Studio for ProPublica)
WE HAD GREAT RESPONSE FROM OTHER JOURNALISTS!
But we wondered –
Had anyone with intellectual and developmental disabilities actually read the plain language version?
Was our work reaching the right people?
And what do people with I/DD want out of journalism?
SO, WHAT DO WE DO?
PROJECT WORK
Create opportunities to listen!
APPROACH #1: RESEARCH TO CHANGE THE MEDIA NARRATIVE
WHO ARE WE?
AMY SILVERMAN
Executive Producer, The Show at KJZZ/NPR
BEENA RAGHAVENDRAN
Editor, New York Times
PHILLIS SCHMIDBAUER
Self-Advocate, Accessibility Consultant
DARIUS CUNNINGHAM
Self-Advocate, Accessibility Consultant
BECCA MONTELEONE
Assistant Professor of Disability Studies, University of Toledo
PLAIN TRUTH PROJECT WORK
“I try to watch some of the news, my parents won’t let me, because there’s…a lot of bad people who are doing bad stuff. Like, I know that bad people are doing bad stuff. I’m getting old, like my parents, I’m not watching the news like them.”
Focus Group Participant
Image Credit to Zach Manuel/MAKE Studio
“I know that there’s not much coverage on, like, certain disabilities. Because there’s stigma around it…so, I just wish that there was…less stigma about this kind of stuff, and more acceptance, and being able to learn and be able to adapt to others.”��Focus group participant
Image Credit to Louis Middleton/MAKE Studio
“I’m not somebody you can use as a ragdoll or a doll or a dog to put on a post to show us off. I’m sorry. I’m a human being with feelings.”
Focus Group Participant
Image Credit to Zach Manuel/MAKE Studio
“I was thinking that, yeah, we all have our own stories and it would be we need to just be able to tell our own stories and say, ‘Hey, you know, we are out here too.’”
Focus Group Participant
Image Credit to Jules Hinmon/MAKE Studio
APPROACH #2: STORYTELLING
Thinking back to that first storytelling boot camp, and everything we’d heard since, both Becca and Amy began working with people with intellectual and developmental disabilities to tell their own stories. Becca broadcasts these stories with a podcast on the Toledo public radio station. Amy helps people tell stories as a way of making journalism better.
APPROACH #3: USE YOUR VOICE TO MAKE CHANGE
I am a self advocate on the ADDPC, Arizona Developmental Disability Planning Council. We talk about inclusion grants and projects around people with disabilities. I also write stories about my personal life as a person with a disability, and I dance and act.
PERFORMANCE
ADVOCACY
In 2020 I was in a production of Hairspray at my high school. The R word was used in the script of the musical, and that word is hurtful to people with disabilities like me. So, I went to the director and asked him to take it out of the script, and he did.
I was invited to the Arizona Capitol by former Arizona House of Representative member Jennifer Longdon for the bill signing of Supported Decision Making.
I attend ADDPC meetings every few months where we discuss how we can support people with disabilities through projects and funding.
Advocating for yourself can help other people too so it’s important to speak up.
ADVICE FOR OTHER PEOPLE WHO WANT TO LEARN TO SPEAK UP AND USE THEIR STORY?
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My advice is to stand up for yourself, don’t doubt yourself because you got this. Get involved in the disability community or do things for other people who have disability. Sharing your story can help someone and shows people outside of our community how people with disabilities can shine and do hard things.
RESOURCES, TIP SHEETS, AND CHECKLISTS ARE HELPFUL – BUT NOT IF WE DON’T CHANGE THE CULTURE FIRST
THANK YOU!
LEARN ABOUT OUR PROJECTS:
LEARN ABOUT US:
THANK YOU TO THE FOLLOWING FOR SUPPORT:
Want to try it out?
Free 6-week storytelling workshop curriculum