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Raising Awareness of Chronic Illnesses
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Meet DJP Mentor Meredith O’Brien
October 5, 2021
Disability Justice Project mentor Meredith O’Brien has always loved reading and writing. “As a kid, I was often reading and trying my hand at writing little stories,” she says. “I’d find notebooks around the house and just start writing stories in them.”
Today, O’Brien is a 52-year-old author of four books and has been a School of Journalism instructor at Northeastern University for the last six years. She previously taught journalism at the University of Massachusetts Amherst and Framingham State University, and she has written for multiple publications, including The Union-News (now called The Republican) in Springfield, Massachusetts, and The Boston Herald. Additionally, she’s worked for the Center for Public Integrity, a nonprofit news organization dedicated to inspiring change through investigative reporting.
O’Brien is a Massachusetts native. She grew up in West Springfield and is the oldest of two children. Though she’s had an affinity for literature since childhood, a pivotal pop quiz in an AP history class during her high school senior year partially prompted her interest in journalism.
Her AP history teacher made her realize how little she knew about domestic and international news. “… As soon as I was a freshman at UMass Amherst, I decided to take a journalism class and got involved with the student newspaper there … and from then on … it just whet my appetite,” she says. O’Brien ultimately received her undergraduate degree in journalism and political science. In 1994, she pursued a master’s degree in political science from American University to gain a deeper understanding of politics and to enhance her reporting on the topic.
O’Brien likes to write on social media too. She is a news and Twitter enthusiast; her commentary includes pop culture, news analysis, sports, and literature. When she’s not tweeting in her spare time, she’s reading books, watching films, or spending time with her two dogs. She is also married and a mother of three.
To make [disability] part of life, that’s what I would love for it to be – part of life that everybody’s respectful of and aware of and understanding.
Meredith O’Brien
In recent years, O’Brien has shifted her focus mainly to teaching and book-writing. Last year, she published Uncomfortably Numb, a memoir about her experience with multiple sclerosis since her diagnosis in July 2014. The book was originally a thesis for her master’s degree in creative non-fiction at Bay Path University from 2016. “Writing a memoir was very scary,” she says. “It was natural when I started it for my MFA program but to actually launch it out to the world was scarier than any … of the other pieces of work I had written.”
O’Brien believes educating people about chronic illnesses and invisible symptoms is important. She herself has experienced harassment due to a lack of widespread awareness of chronic illnesses. Her involvement with the Disability Justice Project, however, is an avenue to prompt awareness of disability via journalism. She wants to see fellows of the DJP write about disabilities in a fearless and thoughtful way. “For the world to be able to come to terms with everybody’s different abilities … to make [disability] part of life, that’s what I would love for it to be, part of life that everybody’s respectful of and aware of and understanding.”
News From the Global Frontlines of Disability Justice
Voices Unsilenced
Often dismissed as a personal concern, mental health is a societal issue, according to Srijana KC, who works as a psychosocial counselor for the Nepali organization KOSHISH. KC’s own history includes a seizure disorder, which resulted in mental health challenges. She faced prejudice in both educational settings and the workplace, which pushed her towards becoming a street vendor to afford her medications. Now with KOSHISH, she coordinates peer support gatherings in different parts of Nepal. “It is crucial to instill hope in society, recognizing that individuals with psychosocial disabilities can significantly contribute,” she says.
Capturing Vision Through Sound and Touch
Last summer, the DJP trained Indigenous activists with disabilities from the Pacific on the iPhone camera to create a documentary series on disability and climate change. With VoiceOver, the iPhone provides image descriptions for blind and low-vision filmmakers and offers other accessible features. “If you think about it, it doesn’t make sense for a blind person to use a camera,” says DJP filmmaker Ari Hazelman. “The iPhone gives you more avenues to tell your story in a more profound way as a blind person.”
Beyond the Frame
DJP mentor Kishor Sharma is known for his long-term photography and film projects exploring community and change. Over the last 12 years, he has been documenting the nomadic Raute people in mountainous Nepal. With any project, Sharma aims to actively engage participants, sharing photography and videography techniques. In September, Sharma became a mentor to DJP Fellow Chhitup Lama. He was eager to connect “this idea of sharing the visual technique with the storytelling idea and the issue of disability inclusion.”
‘I Am Left With Nothing’
Recent flooding in Rwanda has left many persons with disabilities without homes and jobs. “Sincerely speaking, I [am] left with nothing,” says Theophile Nzigiyimana, who considers himself lucky to have escaped the flooding. The flooding demonstrates the disproportionate impacts that disasters have on persons with disabilities, which will only intensify as climate change continues.
‘Leadership Training is a Key Focus’
DJP Fellow Sita Sah interviews Neera Adhikari about starting the Blind Women Association Nepal (BWAN) and the steps BWAN has taken to advance the rights of Nepali women who are blind and low-vision. Women with disabilities, particularly those living in rural areas, “face discrimination from family and society which prevents them from venturing outside their homes,” says Adhikari. “In a household where there are two children, one disabled son and one daughter, societal beliefs often favor sending the son to school while neglecting the daughter’s education.”
Accessible Instruction
Nepal has between 250,000 and one million Deaf people, but most do not attend school. In many schools for Deaf individuals, education ends at 10th grade, and higher education is rarely available and often inadequate. DJP Fellow Bishwamitra Bhitrakoti interviews Satya Devi Wagle from the National Federation of the Deaf Nepal about the strategies, challenges and successes of her work on inclusive education. “Because hearing teachers are not competent in sign language, there is no quality instruction in a resource class in Nepal,” she says. “We are working … to create a Deaf-friendly curriculum.”