When Alice Wong was a baby newly diagnosed with spinal muscular dystrophy, a doctor told her parents — Chinese immigrants who’d 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.
ALICE WONG: In seventh grade, we were going to go on a field trip to a bistro. The day of this field trip, my. teacher [INAUDIBLE]. And just told me, this restaurant has a step. And you can't go. No apology. No other explanation. She just did not give, you know, a [BLEEP].
I am the daughter of two Chinese immigrants who moved from Hong Kong to Indianapolis, Indiana during the 1970s. When I was about a year old, my mom noticed that I wasn't lifting my head up. A neurologist diagnosed me with a type of muscular dystrophy. Overall, it just means a progressive weakening of all the muscles in the body.
My parents told me that when they first heard about my diagnosis that they cried. They were immigrants. [INAUDIBLE] language. They must have been terrified. At that time, in the 1970s, there wasn't much known about it. They told [INAUDIBLE], she probably won't live past 30.
My first experience with activism took place when I was in grad school. It was really exciting to be with other disabled people who were really concerned about how do we improve our campus.
In 2014, a lot of people in the disability community were getting ready for the 25th anniversary of the ADA. So I wanted to figure out a creative way to contribute. And I've always been a fan of StoryCorps, which is a national oral history nonprofit. And that's when the light bulb turned on.
For so long, disabled people didn't tell their own stories. They were always told for us. The Visibility Project was born.
Initially, it was just a one-year oral history campaign. It blew up in a lot of ways. As of 2020, we have a little over 140 oral histories recorded from all over the country.
I was 16 when the ADA passed. It turns 30 this year. I'm really filled with a lot of conflicted feelings. You know, I want to be appreciative of the law and when it does. And I also think about the challenges and the gaps that remain.
For instance, during this pandemic, several governors received complaints that their press conferences did not have an ASL interpreter. The governor of Florida was just sued by deaf and hard of hear people because they need access to information.
One stark difference I notice between the Obama administration and the Trump administration is they [INAUDIBLE] with disability community. It is not hyperbole when we say this administration actively wants us to die. And that's why the fight has to continue.
A law does not fix the world overnight. We should all aim and expect more.
Here we are in the year 2020. And I'm really proud to say that I'm still alive. I turned 46 this year in March. I am living my best life right now. I think the [INAUDIBLE] would not believe me.
The world is better. But we've really just started. And I am just so excited to keep moving toward the future.