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In her ten months as a research assistant at the Center for Rehabilitation Outcomes Research, Niveda Tennety said one of the most important lessons she has learned is the value of storytelling. “Storytelling is a vehicle through which you humanize people, but also provide a platform for systemic change,” she said. “It’s a vehicle to advocate for people.”
Tennety’s belief that “researchers are advocates,” has guided her work at Shirley Ryan AbilityLab, including writing interview guides and hosting a podcast. She developed a love for learning about research methods while studying at UCLA. “I thought it was important to keep my experiences in mind. If I’m not integrated into the community, what does that mean for the research that I’m doing?” she said. “There are a lot of different types of knowledge. I’m really interested in learning about how research can be conducted in a way that is led by communities and aims to improve the material conditions of people.”
There are a lot of different types of knowledge. I’m really interested in learning about how research can be conducted in a way that is led by communities and aims to improve the material conditions of people.
Niveda Tennety
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Though she understands the factors that might restrict community-led research, such as time, money, and the knowledge base of an institution’s staff, she has built it into her work outside Shirley Ryan AbilityLab as well. In 2020, she was a founding member and social media content creator at AZI Media, a multimedia company that creates content for Asian American audiences. The group has been publicized in Vanity Fair and Buzzfeed, but its origins were simple. As she and other staff members wrote a mission statement, they wanted to continue to educate themselves, as well as their audience. “We really wanted to be clear about the fact that if we’re journalists, we have to be active participants in demanding full, systemic change,” she said. “I don’t believe there is such a thing as neutrality or objectivity in journalism. Narratives are important, and they are created by journalists.”
Tennety takes pride in AZI Media’s coverage of such topics as critiquing increased policing as a solution to anti-Asian hate crimes, the protests of Indian farmers against corporate interests, and how Cambodian, Laotian, and Vietnamese refugee communities in the Bronx are coping with government inaction during COVID-19 through mutual aid efforts. As for the social media aspect of her work at AZI Media, she cites social media’s reach as its most positive trait. Yet she recognizes the damage of misinformation and disinformation. “It’s also not possible to be comprehensive through social media posts. They can end up being too simple,” she said. “It’s not just about sharing knowledge but making sure your audience is able to critically engage with the work they’re seeing.”
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As she enlists research participants and members of the disability community in the Center for Rehabilitation Outcomes Research projects, Tennety works with the team to remain conscious of design justice principles. “How do we recruit (for our research projects) in a way that’s not the most convenient or the most obvious?” she asked. “When we’re looking at organizations that provide what is considered to be exemplary home and community-based services (HCBS), are they just the largest organization? Are they the organizations that are award-winning? At the same time, are there HCBS provider agencies that may be under-resourced, or located in under-resourced communities, but that are still providing services that meets their communities’ needs?”
Tennety’s coworkers value her ability to investigate these questions in a supportive way. “Niveda’s contributions to the work at CROR are unmatched,” said Tonie Sadler, a postdoctoral student who works with her. “She strengthens the research teams and projects with her focus, determination, and passion to learn and to improve the lives of people with disabilities. Niveda approaches her tasks with thoughtfulness and enthusiasm, making sure to listen carefully and support all perspectives of her fellow team members, collaborators, and participants in our studies. She is an absolute joy to work with!” And Lindsay DuBois, project manager at Center for Rehabilitation Outcomes Research agrees. “Niveda is remarkably thoughtful in how she approaches any research project. She analyzes different possible approaches and considers the implications down the line for each option,” she said. “She has a keen eye for the details and is able to balance a wide array of complex tasks to ensure that deliverables are of the highest possible quality. Moreover, Niveda is quick-witted and warm, and a truly delightful collaborator.”
She strengthens the research teams and projects with her focus, determination, and passion to learn and to improve the lives of people with disabilities.
Tonie Sadler, Post-Doctoral Fellow at SRAlab
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Tennety, who was born in India and grew up in Chicago, is still considering her career options and is debating between going into research full-time or becoming a practicing physician. As she considers the type of doctor she might want to be, she thinks about the work of her mother, who is also in the disability studies field, and of a doctor who has helped her manage her polycystic ovarian syndrome. “It was this very holistic way of managing my condition,” she said. “It was the first time I experienced a health care provider spending time with me and learning about who I was as a person to be able to cater treatment and management to me. If that’s the route I go down, that’s something that I value a lot. What goes into providing care to a person in a way that is meaningful?” The advocate in Tennety was honed in her personal life as well. Her father’s sister has an intellectual disability and lives in India with her grandmother. Tennety grew up knowing that her family will eventually care for her aunt, and she believes this was part of her mother’s motivation for entering the disability studies field, to learn as much as possible about U.S. policies and systems. “There wasn’t as much knowledge of the supports and services available, even if it’s self-sufficiency, self-direction of care,” she said. “These are all what I’m learning now. There must be radical changes at multiple levels. There are no Band-Aid solutions.”
Tennety said all her skill sets and experiences in research, journalism, and health care apply to her future career in research or practice. At the core, for her, is treating people well. “I’m really interested in collective care,” she said. “What alternative ways - ways outside of formal programs - have people figured out to live and take care of each other?” She thinks that for her career and for health care, “there are a lot of possibilities.”