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Raising Awareness of Chronic Illnesses
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Meet DJP Mentor Meredith O’Brien
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
The Language of Comedy
Indonesia’s first Muslim female stand-up comic, Sakdiyah Ma’ruf was recently hired to work as an interpreter and instructor with the Disability Justice Project’s first cohort of Indonesian fellows. As a language interpreter, she works to build bridges and connect people. Connection and communication are important to her. She counts herself fortunate that both her work as an interpreter and as a comedian share those commonalities: “I’m first and foremost interested in comedy because of the language. I thought it sounds like poetry even, where it is well-crafted.”
“Women and Girls with Disabilities Must Have a Voice”
Dr. Bärbel Kofler stated that women and girls with disabilities are between three to ten times more likely to experience gender-based violence than those without disabilities. “Women and girls with disabilities must have a voice,” she said. “Only then will they be able to fully participate in social, economic, and political life.” The next Global Disability Summit will occur in 2025. In her speech, Elizabeth Kanjiwa, a youth leader with visual impairments from Family Planning Association Malawi (FPAM) and International Planned Parenthood Federation (IPPF), recommended that the voices of people with disabilities be included in various high-profile meetings like the Global Disability Summit, where decisions are made, so that there is “nothing about us without us.”
Read more about “Women and Girls with Disabilities Must Have a Voice”
Struggling to be Believed
Physicians tend to assess the veracity of their patients – which is, ironically, also a subjective measure – before exploring new, unmeasurable symptoms. But many MS symptoms, like fatigue and nausea, are unquantifiable, impossible to be measured by an external, unbiased machine, and, therefore, are easily dismissed since there is no one test that can say, “This patient is more fatigued than someone of her age and level of fitness should be. So says the test.” Or, “This report says her level of taste is significantly altered.”
Dwarfism and the Importance of Universal Design
The concept behind accessibility is something that advocates refer to as “universal design.” The idea is to make facilities accessible to the disabled and able-bodied alike, and to do it in such a way that it not only doesn’t inconvenience the able-bodied but actually helps them. The classic example is curb cuts, which have turned out to be as much of a godsend for parents pushing strollers as for wheelchair-users.
Read more about Dwarfism and the Importance of Universal Design
Invisible No More
Every week, the women of the DJP pushed me and my archaic ideas about disability to a whole new realm. Through the strength of these women and the unparalleled knowledge that they carry, I understand more. I understand that a disability can be more than what’s shown on the surface – some boil slightly underneath, warm to the touch.
Teen Pregnancy During Covid
Uganda has seen a surge in teen pregnancies since schools were shut down due to the pandemic. The lockdowns have deprived girls of the social protection schools offer, making them more vulnerable to sexual exploitation and abuse. “During this COVID period, the teachers have been helping the parents to teach the children about sex education, but the fact that schools have been locked for a long time, it has been hard to educate the children on sex information,” says Gorret Namwanjje with TRIUMPH Uganda.