Agency, inclusion, and empathy as power: The last dispatch from my MA in Engagement Journalism
If you’ve been here awhile, you know that for the last 18 months I’ve been completing my Master’s in Engagement Journalism at the Craig Newmark Graduate School of Journalism at CUNY. Attending graduate school in the middle of a pandemic has been a wild ride I wouldn’t trade for the world. It seems poignant and correct, to me, to have learned so much about listening to communities during a time where a chasm has opened in our world and countless people need someone to listen, to amplify their voices, and to work toward change.
Listening and amplifying is what I’ve done and what I’ll continue doing wherever I end up after graduation. But let me tell you about what I did at Newmark first.
I. My background
My twin brother Matt has autism and is visually impaired. He is the reason I’ve been adjacent to the disability community throughout my life. Over our 25 years together, Matt has let me into his world, and my mission as a journalist is to open up that world through the voices and stories of disabled people who deserve amplification. I’m never “giving” anyone a voice — everyone already has their own.
The Engagement Journalism program places a high value on listening. Our approach to journalism begins with connecting with individual communities, listening to their frustrations and needs, reflecting those back, and then building reporting and products that attempt to solve those needs. When I applied to the program in June 2020, I didn’t consciously know how to do any of that. I was feeling a little lost. I knew what kind of reporter I wanted to be, but couldn’t see a way to get there through my current job. I knew I wanted to get my Master’s one day, but knew the more expensive journalism programs probably wouldn’t pay off for me. In one day of sheer “I am determined to find a Master’s for me” panic, I found the Engagement Journalism program, inquired about applying, and found out that I had two weeks to get my application together because of extended COVID-19 deadlines. So I did. And in August 2020, I started listening.
II. Takeaways from listening
Like I said, I knew from the beginning I wanted to work with the disability community in some way. But I had to figure out where to start. I made a conscious effort to surround myself with voices and perspectives from the disability community, and used social media to ask people what journalists get wrong about covering disability. Sources told me
- Journalists exclude disabled people from disabled narratives
- Journalists do not ask people how they want to be referred to, and use inappropriate or infantilizing language to describe disability
- Sometimes, journalists really aren’t listening
I could sense the frustration rolling off my sources when they told me all of this. And to be sure, journalists making mistakes probably aren’t doing so on purpose; they’re not necessarily insidious. But many journalists and publications need to place a greater emphasis on giving underserved people agency — working with communities to tell their stories, not extracting stories from communities.
So that’s what I decided to do. Throughout the last 18 months, I’ve centered disabled people in my stories, asked every source how they want to be referred to, and really tried to listen, often reflecting sources’ sentiments back to them in the middle of conversations to make sure I was getting it right. I’ve been silent on the other end of the line as people’s voices dripped with sadness and anger. I’ve taken calls from bathroom floors, from the subway, from my desk in my apartments old and new. Building trust and doing right by this community is so important to me, as a human and a journalist, I wanted to be sure I was getting it right every step of the way.
Over time, I decided to work with intellectually and developmentally disabled people living in group homes across the state and their families. I connected with people through social media and community organizations; I have been FaceTiming one resident almost every Friday for almost a year. I wanted to explore the group home system because every part of it seemed rife for potential exploitation, abuse, or neglect — and by the same turn, every part of the system is full of people who have the agency and power to tell their own stories.
III. My community practicum brings everything together
After a year of listening and reporting — and after a summer in THE CITY’s Civic Newsroom, which drove home how important community engagement is — it was time to create my community practicum. I could’ve told a thousand stories from a thousand different perspectives. That’s how rich and complex New York’s disability system and community are. But one issue stuck out to me: residents and their families shared overwhelmingly negative stories about their experience with the New York State Justice Center for the Protection of People with Special Needs.
The Justice Center is the state’s agency responsible for investigating and potentially substantiating cases of abuse and neglect inside group homes operated by the Office for People with Developmental Disabilities. According to director of public information Christine Buttigieg, the Justice Center “undertakes extensive outreach efforts,” including hosting seminars for individuals and families, soliciting feedback from an Advisory Council (50 percent of Council members are individuals who have received services or their personal representatives), and operating an Individual and Family Support Unit. The Center’s website was also overhauled in 2019 to make agency processes more accessible, Buttigieg says.
However, my sources’ lived experiences, for the most part, did not match up with these efforts:
- “I have experienced abuse and neglect going unfounded, and the abuse continues.”
— Eric Bisantz, who lives in an IRA in Buffalo - “I am very disheartened by the Justice Center. They have not helped me once.”
— Barbara Rios, whose daughter lives in an IRA in Suffolk County - “If I spoke up to staff, they would get mad and go on their way. So I was very careful of what I chose to speak up about. I walked on eggshells all 15 years I was there.”
— Kelly Thomas, who lived in a Steuben County IRA from 2001–2016 - “I’m disappointed that the agencies designed to protect vulnerable individuals are really kind of falling down on their jobs. I’m not afraid of hard work, I don’t shy away from doing what needs to be done. But it feels like we’re constantly treading water.”
— One Westchester mom whose son lives in a group home
These are sources who were willing to go on the record in some capacity. Many were not, for fear of retaliation.
Sources’ concerns also included
- No/little communication during the investigation process
- Cases that family members feel are irrefutable have been returned as “unsubstantiated” — sometimes several cases per individual resident
- Inaccessible information because of a difficult-to-navigate website and language that might present a barrier to understanding
- Little awareness of the Justice Center itself
- Private agencies that are allowed to self-investigate cases of abuse and neglect contribute to a culture of cases going unsubstantiated, so agencies can protect themselves
I knew I had to do a few things for a few different facets of my community to mediate some of these concerns. Accessibility and agency were my main goals. First, I created a service reporting Medium post that made the process of reporting potential abuse and neglect to the Justice Center more transparent for families and the public. The piece details how Justice Center investigations work, how long they’re supposed to take, and the resources the Center provides to support families. One of the problems I identified from family members is that some of the Justice Center’s information was hard to find. This reporting cuts through the noise of jargon, unnavigable websites, and unfamiliar processes.
But increasing accessibility isn’t chiefly about family members, although they are important. I knew I wanted to make something that cuts to the core of the issue: disabled group home residents feeling angry and upset about the Justice Center’s processes. So I created “How to Stand Up for Yourself in Your Home,” an accessible self-advocacy guide that helps residents understand
- How to identify abuse and neglect
- Who to call in the event abuse or neglect happens inside their home
- How the Justice Center’s investigation process works
- Their rights as residents of group homes
“How to Stand Up for Yourself in Your Home” aims to be as accessible as possible. It has been translated into plain language by Dr. Rebecca Monteleone of the University of Toledo. It will soon be translated into Braille. In the future, I want to create audio and visual versions of the guide as well for recipients for whom reading is not the best way to learn. The guide has undergone pre-publication review, too.
“How to Stand Up for Yourself in Your Home” was developed with the help of disabled group home residents, family members, and community organizations. I couldn’t have done it without this community, and I hope it helps this community.
IV. Distribution and feedback for “How to Stand Up for Yourself in Your Home”
A big slice of my community — the slice I am most focused on serving — might not receive information in traditional ways. So I didn’t want to create a newsletter or a website for the self-advocacy guide that wouldn’t reach group home residents. Instead, I delivered the guide to individuals however they receive information — through the USPS, over email, in the Google doc, and more. The feedback I’ve gathered so far has been overwhelmingly positive.
At Newmark we’ve learned so many unique ways to measure large-scale impact, it’s funny that I had to do it on a smaller scale. However, I’ve also been talking to some NYC-based disability rights groups, such as the Self-Advocacy Association of New York, about distributing “How to Stand Up for Yourself in Your Home” through their networks. Partnering with local groups my community trusts — and who have connections to more group homes than I do — is one of the most effective ways I can create impact. I am excited for the future of “How to Stand Up for Yourself in Your Home,” which will include working with more community groups to reach the approximately 36,000 people who live in group homes throughout New York.
When it comes to impact — of course, I hope this self-advocacy guide reaches as many people in as many homes as possible. But really, if the guide helps one person know who to call when they need help, that’s success to me.
V. Building relationships and earning trust in untraditional ways
Engagement journalism is about trying new ways to report, solve problems, meet needs, meet people where they are. It’s about constantly working to understand the people you’re working with and making things that work for them. It’s about building relationships in ways you never expected, and earning trust through those sustainable relationships. It’s about investigating systems that have failed people, as I have also done this semester, a piece that will be published soon.
The cool thing is that anyone in any newsroom can learn how to use engagement journalism tactics; the point is that the journalist is committed to connecting with their community.
VI. Last words….but not really
This is my last dispatch as a graduate student. I graduate on this Friday, December 17. The last 18 months have been intense, bizarre, and life-altering. The girl from June 2020 who didn’t know how to get to where she wanted to go would be proud.
This is my last dispatch from graduate school but it’s not my last dispatch — not at all. This work doesn’t stop because we’re graduating. If anything, the real work — connecting with our communities professionally, proving the value of engagement newsroom to different newsrooms — begins now.
If you’d like a copy of “How to Stand Up for Yourself in Your Home,” email me. If you have a tip for me, email me. If you want to tell me your story, email me. If there’s something I did wrong that you know how to fix, email me. My future is about continuing to connect with the disability community and any other community I work with throughout my career. I am here to listen.
If there’s anything the last 18 months have taught me, it’s that knowledge is power, engagement is power, and empathy is power. Listening to my community begets the public listening to my community. Working to showcase my community’s agency means the public gets to see my community’s agency. And working to center disabled voices means people get the centering they want and deserve to have. The future is uncertain—but one thing it definitely holds, is more of all of this.
I’m always here to listen at jacqueline.neber15@journalism.cuny.edu.
