Recognizing the trailblazers within the disability community in the place where it all started
April 09, 2020 Updated: 10:10 a.m.
About six guests in cocktail attire squinted at what looked like a green truffle resting at the center of the table.
It was the night of the fourth annual Ed Roberts Awards in Berkeley, California. The cavernous U.C. Theatre was aglow with dim violet mood lighting.
A consensus had yet to be reached.
“Is it edible?”
It was certainly not edible.
“No, no let me feel it,” a man said. “Hm, that’s a wick—oh, it’s a candle.”
The guests sighed in relief, the great mystery solved. Until another voice chimed in.
“Okay, but what is it?”
The guesses: Succulent. Brussels sprout. Asparagus (that one made no sense).
“Guys, I think it’s an artichoke.”
Ohh.
A hand motioned to the awards on the stage. The event’s namesake, Ed Roberts, was a disability rights activist and former executive director of The Center of Independent Living (TheCIL), based in Berkeley, California.
Roberts contracted polio at 14, and when doctors told his family that he would be a “vegetable” for the rest of his life, Roberts said, “If I’m a vegetable, I’ll be an artichoke, prickly on the outside, with a big heart in the middle.”
The Oscars have their gold men—the Ed Roberts Awards have polished white artichokes. The awards recognize and honor individuals who have made contributions to the disability community.
When you’re building a legacy, bits of confusion are just part of the growing pains. This was only the fourth iteration of the awards, presented by TheCIL. The concept of a disability awards event is still relatively new.
But then again, the concept of needing such an awards event is new, in itself.
Online, TheCIL lists no official criteria or process for choosing these honorees, other than the fact that the organization is the one that selects them. The implications are up to interpretation.
However, the past always hints at the future. The first Ed Roberts Awards in 2017 honored Tom Bates, former mayor of Berkeley, and former Senator Loni Hancock—two proponents of the disability rights movement. As the years went by, the recipient list not only grew, but included a new wave of honorees: those whose work wasn’t engrained in the movement at all.
Rather, these individuals had careers and businesses that thrived because of the actions that came before them.
It’s a testament to what can happen in the span of a lifetime, and why history in the making is always…in the making. You don’t know how far you’ve come until you look back.
When the disability rights movement began in the 1960s, who would have known that years later, actor Peter Dinklage, a little person, would win multiple awards for his role as Tyrion Lannister in HBO’s “Game of Thrones”?
These historical milestones of representation in media are closer than we think, and those in the disability community who make those strides are often advocates themselves.
Take RJ Mitte, actor and advocate best known for his role as Walter “Flynn” White, Jr. in AMC’s Emmy and Golden Globe Award-winning series “Breaking Bad,” who was also the first to receive an Ed Roberts Award at the event.
“People are trying to make this happen, to give opportunities to people who not everyone believes in,” Mitte said. “Disability, or the perception of disability, is really what we’re combating.”
Ali Stroker, the first wheelchair-using actress to appear on Broadway as well as the first wheelchair-using actress to be nominated and win a Tony award, touched on barriers of representation and how to overcome them.
“The moment when we meet each other and see each other in our eyes, representation matters,” she said in an acceptance speech video presented at the event.
Cur8able founder and CEO Stephanie Thomas was recognized for her work as a disability fashion styling expert. A social entrepreneur, her efforts toward accessible fashion have resonated with designers and retailers alike.
And the final award went to Zack Gottsagen, star of “Peanut Butter Falcon,” the highest-grossing independent film of 2019, who made it clear that his work as an actor has only just begun.
Jim Fousekis, who was head of Friends of TheCIL from 1984-1988 and helped secure funding for the organization, was presented a special recognition award for his work.
At the event, many of the guests had disabilities as well. When the ceremony ended, I couldn’t help but overhear two men on their way out of the theater, talking about seeing themselves on screen. Except one didn’t really feel that way.
“Hmph,” he said. “Good for them.”
Good for them?
I stop by the headquarters of TheCIL the next day. Post-awards show, it’s like going to Oz and getting a peek behind the curtain.
It’s located on the second floor of a red-bricked building, and glass doors open up to an office space with brightly colored walls, wheelchairs and some adaptive workout equipment. I hear a pattering of paws and meet Fly, a scruffy office dog that could fit in my camera bag.
Stuart James, the executive director of TheCIL, is in his office. He’s from New York so he asks if I’m sensitive to “colorful” language. I’m not. He breathes a sigh of relief.
You can tell he’s been in hot water before.
I ask him about the Ed Roberts Awards, which celebrates people with disabilities.
“One of the things I found a bit shocking,” James says, “is that the disability community doesn’t necessarily ever celebrate the successes of people with disabilities, in a way that they should.
A lot of times people who are really successful in the disability community, get labeled a ‘super crip’—and that’s not a positive term. That’s a negative term as if they’re special: ‘Don’t compare me to them, they’re able to do something great.’ That doesn’t mean I have to do something great.”
He pauses.
“You know, I used to be an agent for sports. Millions of kids wanna play in the NFL. Millions of kids want to play professional sports, and parents spend thousands of dollars for their kids to participate in youth programs.”
James leans closer like he’s sharing a secret.
“Less than 1% of those kids are ever gonna make it.”
How many kids in the world would love to be LeBron James, he asks. But who has LeBron James’ talent? Nobody. But that doesn’t mean we shouldn’t celebrate LeBron James.
Before working at TheCIL, James had worked in show business.
“It’s a tough town,” he says. “And it’s a tough town for anybody.”
But what is it like to work in Hollywood, where so many able-bodied people already struggle with representation?
According to a study from the University of Southern California Annenberg Inclusion Initiative, out of 900 popular movies from 2007 to 2016, only 2.7% of characters with speaking roles were portrayed as disabled. That’s a small amount of representation for the largest minority group in the U.S.
“For people with disabilities,” he says, “It’s exceptionally hard because we’re not in the scripts. We’re not in the stories.”
About 20 years ago, he did casting with prominent directors. It was a different commercial every day, and they received a lot of actors. But whenever there was an opportunity related to disability, it was almost impossible to find actors.
“It’s a tough industry to break into because there aren’t a lot of roles. A lot of kids would like to pursue it but don’t. Acting schools–the really good acting schools–I don’t know if they’re particularly friendly or open to people with disabilities. So you have this vicious cycle: not enough roles, so there’s not a lot of people pursuing it.
“It’s a vicious cycle and we hope it changes soon, hopefully with things like “Peanut Butter Falcon” and whatever else is coming down the line,” he said.
More stories with disabilities leads to more roles, more roles mean more opportunities, more opportunities mean more agents willing to represent, and the road gets a little easier. But to James, that doesn’t change the fact that making it in Hollywood just isn’t easy in general–for anyone.
James’s own experience was different. He’s aggressive. Personable. Socially engaged. And really, really good at networking. Hollywood played to his strengths. And in his experience, the harder he worked for himself, the more people in Hollywood wanted to help.
He keeps this philosophy close when he speaks to young kids with disabilities, who are the focus of TheCIL’s programs.
“I never want to imply or make anyone think that these things that they want to do are easy,” he said. “They’re going to be hard. And in all likelihood it’ll be harder for them than an abled person. But my take on that is—at this point, who cares? The person I’m talking to isn’t going to change tomorrow. Today might not be easy, but don’t worry about it. We can’t fix that. It’s really about your journey, and your journey means you gotta work harder than them and show up. It ain’t gonna kill you.”
If the entire disability movement in U.S. history, all its efforts in representation and inclusion, were put on a dial from zero, the needle wouldn’t move too far. And even though it’s been years, James says it might look like it never moved at all. But that’s not the case.
Sometimes it means making things harder, but that’s not always a bad thing. If next year’s round of honorees are harder to select due to an influx of worthy contenders, that’s good. If conversations and plans about disability and inclusion get trickier, at least they’re happening. It’s exhausting, but it’s worth it and worth celebrating every bit.
Dealing with the prickly side of things is easy, once you get to the heart of it.
Aitana Yvette Mallari
Writer
@aitanamallari
Aitana Yvette Mallari is an online media journalist who runs on caffeine and WiFi. She’s lived in the Middle East, Asia, and both coasts of the US and writes about health, tech, and amazing people doing amazing things. She is a graduate of the Walter Cronkite School of Journalism and Mass Communication and probably has a deadline to get to.
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