Phoebe Smith didn’t hold up a sign in Washington on Saturday. She couldn’t.
She cannot walk, talk or move most of her body.
But that has not stopped her — and thousands of others with disabilities — from making their fears about President Trump heard. Organizers with the Women’s March on Washington estimate that among their remarkable attendance numbers were tens of thousands of people with disabilities, marking what may have been the community’s largest organized gathering.
But for all those who attended, there were others who wanted to be there but remained homebound, unable to stand for too long or navigate the trip in a wheelchair or handle the crowds. They, too, found a way to be vocal, if not visible.
When Sonya Huber launched the website Disability March as a way to give people like herself, who wouldn’t be able to physically attend a demonstration, a place to express themselves online, she envisioned maybe 50 people would participate. Instead, she and other volunteers heard from several thousand who didn’t just share their perspective for the weekend event but have kept talking on social media, questioning how they can continue to remain involved.
Their activism reveals how Trump — who before the election mocked a reporter’s disability and since becoming president has taken immediate steps toward dismantling the Affordable Care Act — is mobilizing even those who aren’t easily mobile.
“The clear question we’re hearing now from folks is ‘What’s next?’ ” said Huber, a professor in Connecticut who suffers from chronic pain as a result of autoimmune diseases. “It makes you just think about how no matter what condition a person is in, they are part of the body politic and they want a voice.”
Some of those who joined the Disability March live in the Washington region, so close to Saturday’s gathering that they could have taken Uber. Others hail from places where no marches were being held. Some have physical disabilities; others, mental impairments.
Some, like Smith, can’t talk, even if they have much to say.
The 44-year-old from Wisconsin has locked-in syndrome and can move only one eye. She looks up for yes, and down for no. She also spells using eye movement and the assistance of her mother, Priscilla Smith. Together, they wrote the short essay that appeared on the Disability March site.
“I worry about the health of America,” it reads. In it, Phoebe Smith, who was in college studying to be a teacher when she developed a blood clot in her brainstem, expressed concern that Trump picked Betsy DeVos for education secretary. She also wrote that she shudders at the idea of being in the same room as the 45th president. “He, and other Republicans, now plan to lessen medical, Social Security, Medicare/Medicaid coverage for the elderly, poor and disabled. They claim to represent Christians, but do not follow Christ’s lead.”
She ended the essay with a famous quote: “You measure the degree of civilization of a society by how it treats its weakest members.”
Huber said she and 20 volunteers continue to work to post all the responses they received, about 3,000 from people ages 5 to 92. Many, she said, expressed fears about health-care instability and the loss of Medicaid benefits. Others told of concerns about what will happen under Trump’s administration to children with disabilities in public schools.
Almost all of them, Huber said, expressed gratitude to be able to participate in the protests.
“It almost brings me to tears,” Huber said. “For many people, it’s the first time they have been really visible in a public way. That was something I hadn’t thought about when I started it.”
Huber, 45, said the idea for the website came to her as she looked for a way to attend a march and knew that if she tried to go, it would leave her physically exhausted and recovering for up to a month.
Andrea Scarpino, who knew Huber from graduate school and helped her start the site, said she was surprised by the number of responses but not with the fears expressed in them. Scarpino, who suffers from chronic pain, said that people with disabilities already feel marginalized and that Trump has not done much to ease their worries. The day after the inauguration, the White House removed pages on its website that under the Obama administration dedicated to the rights of people with disabilities.
“We feel vulnerable with this administration, more vulnerable than we have in a very long time,” Scarpino said. The task now, she said, is making sure people can remain involved in the conversation. “I think we all have a sense of wanting to continue this movement and wanting to continue to make our voices heard.”
Mia Ives-Rublee, who headed the disabilities caucus for the Women’s March, said that an estimated 45,000 people with disabilities attended the event, a number organizers are basing on how many people expressed a need for a special accommodations. The march had an Americans with Disabilities tent and provided handicapped accessible port-a-potties and American Sign Language interpretation, among other services. It also dedicated 200 volunteers to helping the disabled.
“I think we are extremely pumped to be included in this march, and it is a starting point for other social movements to really see how we can start to integrate accessibility needs and disability rights,” said Ives-Rublee, who has brittle bone disease and uses a wheelchair. She said women with disabilities should be at the table for discussions on women’s rights because they have much at stake: They are more likely to be victims of sexual violence and get paid 39 cents to every dollar a man earns.
Ives-Rublee said she was also encouraged to see the online representation of people who couldn’t make it to the march.
“I want to create more of a collaboration with them and really ensure that all voices are heard,” she said. “I think it is important that we realize that there are people who aren’t able to get to these marches.”
Tara Plutz spent the night before the march sobbing.
It was so close. She could drive from her house in Gainesville, Va., to the District less than an hour, and her brother is a lawyer in city. But she knew what it could cost her if she tried. She has a rare genetic disorder that causes tumors to grow in her endocrine system and has lost calcium in her bones as a result. Grocery shopping can leave her exhausted, let alone standing for hours.
In the end, she thought of how she needed to stay healthy for her 4-year-old daughter and turned to the online Disability March.
“I believe I shouldn’t have to choose between life saving treatments and bankrupting my family,” Plutz, 34, wrote for the site. “I March for my LGBQT family members and the inherent rights that they are entitled to. Because love is love is love. I March because I have a daughter and I want her to be respected for her mind not her body. Because women’s rights are human rights.”
She then spent Saturday watching the scene play out on the Mall on television, explaining to her daughter what was being talked about and sending a text message to her 40 friends who made it to Washington.
Each simply read: “I appreciate you being there for those of us who can’t be.”