This feature is part of the ADA 30th Anniversary series, which marks the 30th anniversary of the Americans with Disabilities Act, civil rights legislation which prohibits discrimination based on disability, provides accommodations for employees with disabilities, and requires public spaces to be accessible.
When Alice Wong was a baby newly diagnosed with spinal muscular dystrophy, a doctor told her parents — Chinese immigrants who settled in Indianapolis in the 1970s — that she may not live past the age of 30. She’s now 46, and one of the country’s top trailblazers for disability rights.
As a disabled activist, media maker, podcaster, research consultant specializing in medical sociology, and editor of the just-released Disability Visibility: First-Person Stories from the 21st Century, an anthology amplifying the voices of disabled people, and based on the Disability Visibility online community and StoryCorps collaboration she founded in 2014, Wong’s work has caught the attention of Time and the Obama White House.
Her journey as a champion for the disabled community has been a long time coming. Wong tells Yahoo Life that she was in school when she first became aware of the discrimination people like her face.
“While I always knew growing up I was disabled and different, I didn't realize until I was in junior high the way people really perceived me,” she tells Yahoo Life. “I think some of my earliest experiences of discrimination came from adults — adults that were supposed to support me.”
Adults like the French teacher who excluded the then-seventh-grader from a much-anticipated field trip to a bistro, on the grounds that Wong’s power chair, which she has used since age 8, wouldn’t be able to access the building.
“That just showed me how little she cared about me as a student,” she says. “Or how that would impact me in terms of basically segregating me. And saying it was OK to discriminate against me. It just really woke me up. And it got me really, really angry.”
Wong — who began her own activism during grad school — was 16 when the Americans with Disabilities Act (ADA) was signed into law on July 26, 1990. She admits she’s “filled with a lot of conflicting feelings” as the groundbreaking legislation marks its 30th anniversary.
“I want to be appreciative of the law and what it does,” she says, “but I also think about the challenges and the gaps that remain. Just for instance during this pandemic, several governors in various states received complaints that their press conferences did not have an ASL interpreter. The governor of Florida was just sued by deaf and hard-of-hearing people because they need access to information ... 30 years after this law, we think people should know the law by now and especially as public officials, deaf people still have to sue in order to have access to lifesaving information. That to me is pretty messed up and pretty problematic.”
“A law does not change the world overnight,” adds Wong, whose Disability Visibility platform is marking the anniversary with a series of original essays from disabled BIPOC writers. “They’re there as a guide. But they really offer just the bare minimum, and we should all aim and expect a lot more. Thinking about the 30th anniversary, I’m much more interested in finding the way forward.”
Wong, who wears a mask connected to a ventilator powered by her wheelchair’s battery after being diagnosed with respiratory failure and sleep apnea as an adult, has had a firsthand look at the role government can play in advancing disability rights. In 2013, she was appointed by then-President Barack Obama to serve on the National Council on Disability. (She also has the distinction of being the first person to visit the White House via robot, on the occasion of the ADA’s 25th anniversary in 2015.)
But Wong tells Yahoo Life that Obama’s successor, President Donald Trump, appears to be less invested in supporting the disabled community. Last year, the White House did issue a proclamation celebrating the 29th anniversary of the ADA, though it’s unclear how, or if, it plans to mark the 30-year milestone.
“One thing I notice between the Obama administration and the Trump administration is not only its policies and practices regarding disability rights and the fact that he does not have that many people in his staff who are disabled, [but] I think there's a huge difference in terms of the tone and the approach and engagement with the disability community,” she says. “I think it's been very clear from the outset that this administration is actively harming marginalized communities — LGBTQ, immigrants, Black and brown people, women and disabled people. And as we see with the coronavirus: the absolute political and moral failure of the response to this pandemic and the rush to reopen, and to restart the economy at the cost of human lives. All of the action, or inaction, by the Trump administration just shows how much they value or devalue us. It is not hyperbole when we say this administration actively wants us to die. That's where we are in 2020. That's why the fight has to continue.”
There’s a lot more work to be done, and it will involve allyship from non-disabled people.
“Just believe disabled people,” Wong says. “I shouldn’t have to prove anything. Just believe disabled people and it will go a long way.”
Wong admits that advocacy work and the constant push for reform can feel like being stuck in a “hamster wheel,” with little to show for it. But she’s optimistic about the meaningful change that will come.
“I want to see in the future everybody having the freedom to live in a community safely, with the support they need,” she says. “It can be done. It takes imagination and leadership. People are so afraid of the unknown. People are dying in prisons and nursing homes and it just shows that this form of segregation and isolation is unacceptable. Disabled people have been fighting for their right to live in a community for decades. We’re still not there yet. But I believe liberation is possible.”
So says the former baby who wasn’t expected to live past 30, and the former middle-schooler who was left out because of her wheelchair.
“If I could go back and talk to my 12-year-old self I would say, ‘We did it! We’re here. We’re still alive! Congratulations.’ It does get better,” says Wong. “I think for so many people who never felt seen or heard or comfortable in their own bodies, it does get better as you grow up. You’re going to find your people and what gives you life. I am just living it up. I am living my best life right now at my old age of 46. It’s just waiting for you. I think my younger self would not believe me.”
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