With her tiny frame perched atop her wheelchair and her service dog at her side, Mia Ives-Rublee deftly maneuvers through a restaurant brimming with a busy lunch crowd. She is adept at making space for herself in a world that hasn’t always been welcoming.
She proved that point on a national scale last weekend, leading the Disability Caucus of the Women’s March on Washington.
Ives-Rublee was born with osteogenesis imperfecta, commonly known as brittle bone disease. It’s a genetic mutation that leaves bones extremely fragile, prone to breaks and fractures.
She recalls how growing up in Greensboro, surrounded by adults worried about her health, there wasn’t much room in her life for childhood dreams and ambitions.
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“When you grow up with a disability, a lot of times you’re told by a lot of adults and professionals about what you can’t do,” she said. “That made it very hard for me to figure out what I wanted to do.”
A trip to the 1996 Paralympics in Atlanta helped change that.
“I saw people, everyday people, just getting along with their lives, maneuvering the city and interacting with each other,” Ives-Rublee said. “That really opened my eyes, and my family’s eyes, to this whole group of people that have a community, and have a sense of self and identity, even a sense of disability pride.”
That experience broadened her horizons. She was inspired to pursue adaptive athletics, and as she grew physically stronger, she gained more confidence and greater independence.
She went on to compete internationally in wheelchair track and field, fencing and cross-fit events, all while pursuing undergraduate and graduate degrees in sociology and social work.
Now at 32, she works as a research assistant at UNC, enjoying a level of independence and self-determination her parents and doctors never thought possible.
She still trains regularly and also works as a coach, teaching others about adaptive athletics. It was through this process of reaching out to people living with disabilities that she found her focus shifting from personal achievement to political activism.
“For a long time I wanted to disassociate and show people I wasn’t disabled,” Ives-Rublee said. “As I grew more independent and more self-aware, I started to get more involved in the disability community. It’s been a slow transition. Becoming more connected with disability rights advocates changed my outlook and what I’m passionate about.”
She shied away from advocacy in the past for fear of being pigeon-holed. Now she wants to take a more active role in developing public policy that guarantees equal rights for disabled people.
“I’ve come to the realization that other people aren’t going to fight for us,” she said.
Increasingly, Ives-Rublee sees the need to bring disability issues to greater prominence in the progressive movement. When she heard about the Women’s March on Washington, she reached out to the organizers to make sure the march would be accessible and inclusive.
“For a long time, people with disabilities have had a hard time accessing these mainstream marches,” she said. “My thought process was, if we can create a caucus, a group of individuals who are vocal, who are active, to then talk to national (organizers) about our concerns and our issues, then maybe we can get somewhere.”
Colleen Flanagan is a Boston-based consultant on disability policy. She connected with Ives-Rublee via Facebook after the November election. Flanagan said Ives-Rublee was instrumental in using social media to bring together a broad coalition of activists.
“Mia took leadership, got hundreds of women across the country to RSVP to this event,” Flanagan said. “She is very motivated, very driven, She has effectively brought a lot of the diverse perspectives that disability includes. Disability intersects with so many identities, it can be a beast to try to organize in an event like this.”
Ives-Rublee, Flanagan and others marshaled information and resources to make it easier for marchers with a wide range of disabilities to participate, including volunteers to provide assistance with wheelchairs, sighted guiding, first aid stations and a special tent for participants that meets the standards of the Americans with Disabilities Act, or ADA.
They both believe this is a crucial time for disability advocates to come together. With Donald Trump in the White House and Republicans dominating Congress, they worry there will be efforts to chip away at the provisions of the ADA, repeal the Affordable Care Act, and limit accommodations offered to disabled students in public schools.
“We’re going to continue to badger, to continue to protest, to continue to ensure our rights and the rights of every individual that is marginalized in this nation,” Ives-Rublee said. “We’re going to fight for their rights.”
Flanagan called the march “the first day of the resistance.”
“I’m 37, my whole life I’ve benefited from disability rights,”she said. “Only forty years ago they didn’t exist like they do now. I know there’s the risk of turning back the tides to when we didn’t have disability rights. No way am I going to sit back and watch that happen.”
Looking ahead, Ives-Rublee foresees court battles and protests against any effort by the Trump administration to roll back protections for the disabled community. She says she’s optimistic about the potential for collaborating with a broad range of progressive activists in the years ahead.
“My hope is that this (march) will set a precedent in including the disability community,” she said.
“While I am anxious and extremely wary, it doesn’t mean that I am not hopeful.”