This story is part of, stories about the diverse teams creating products, apps and services to improve our lives and society.
When Tatiana Lee was a kid, she didn't think of herself as "different." Lee -- an actress, model and activist -- has spina bifida, meaning her spine and spinal cord didn't form properly at birth. But as someone who uses a wheelchair, she also didn't see many people like her on TV or in movies.
"You've grown up with this society where this entire demographic is completely invisible," she reflected. "Out of sight, out of mind."
That didn't stop Lee from chasing her dream of becoming the person she never saw onscreen. After moving to Los Angeles in 2010, she's appeared in an Apple ad campaign for accessible features and products, as well as modeling campaigns for companies including Target and Zappos.
But her journey hasn't been without challenges. Acting courses can be pricey, and physical access to buildings for classes and auditions isn't guaranteed for someone in a wheelchair. On top of that, Lee and other actors with disabilities often compete for roles with people who don't have disabilities and, as a result, have typically had more access to training. If other actors do have a disability, Lee has to push through additional barriers as a plus-size black woman.
Lee's struggles highlight just one example of the widespread challenges that people with disabilities face when it comes to representation and access to spaces -- both digital and physical -- in our rapidly changing world. As Hollywood pushes diversity initiatives in the wake of the #MeToo and Black Lives Matter movements, people with disabilities are often overlooked and excluded. The coronavirus pandemic has also highlighted the urgency of digital accessibility, as more people depend on online interactions for everyday tasks. While virtual meetings and classes have helped eliminate physical barriers for some people with disabilities, several issues remain. That includes the fact that COVID-19 data often isn't accessible to people who are blind, and many people with disabilities -- particularly those in low-income communities and communities of color -- don't have access to high-speed internet.
The issues remain prevalent even 30 years after the passage of the Americans with Disabilities Act, which is designed to prohibit discrimination based on disability.
Thankfully, both Hollywood and the tech industry have ramped up their efforts to address these disparities. Organizations like RespectAbility, a nonprofit that promotes diverse and accurate on-screen portrayals of people with disabilities, host labs designed to help creators find jobs in Hollywood. Similarly, The Black List, which showcases unproduced and overlooked screenplays, launched something called The Disability List, which highlights unproduced scripts featuring at least one lead character with a disability. On the tech side, companies like Google, Apple and Microsoft have launched more accessibility features designed to help all customers use their products and services. But there's still a long way to go.
"Disability cuts across every line in terms of race, ethnicity, sexual orientation, gender, etc.," said Lauren Appelbaum, vice president of communications at RespectAbility. "If you want to represent America, you can't do that without including people with disabilities."
Although people with disabilities make up 26% of the US adult population, they appear on screen just 2.7% of the time, according to The Hollywood Reporter. Initiatives like the RespectAbility Lab are working to provide people with additional skills and access to industry executives to challenge the notion that there aren't qualified actors, writers or producers with disabilities.
Apart from being the right thing to do, including more people with disabilities can be financially rewarding, Appelbaum says. According to a 2016 report by Nielsen, consumers with disabilities along with their families, friends and associates make up a trillion-dollar market segment. This, along with the push from accessibility advocates and organizations to diversify casting and hiring efforts, is leading the industry to slowly recognize the value of telling more diverse stories. A growing number of TV shows and movies, from Hulu's Ramy to Disney Channel's Big City Greens, have incorporated disabled characters and storylines.
"People are finally realizing that disability stories are cool to tell. They're interesting and they're not niche," Appelbaum said. "Everyone deserves the opportunity to see themselves represented on screen."
It's important that representation extends beyond just showing white men with disabilities, Lee says. She especially feels the need for greater intersectionality when she's competing for roles with people whose race or size may give them an advantage due to social biases.
"If a casting director or an executive is deciding which girl in a wheelchair to pick, are you gonna pick the black girl who is also plus-sized and has kinky hair, or are you gonna pick the white girl in a wheelchair who has long, blond hair?" Lee said. "There's a huge pool of black women with disabilities who are actually more marginalized than white women with disabilities."
Expanding accessibility in tech
In a way, progress made in entertainment can shape and inspire progress in other sectors, including tech, says Natasha Mooney Walton, founder of Tech Disability Project, which aims to increase representation of tech founders and employees with disabilities.
"When it comes to social issues, Hollywood often is the leader -- [it's] the hub of our culture and the keeper of our societal stories," Walton said. "Making sure we have authentic disability representation is just starting to gain some traction. That's going to hit a tipping point that I hope will then translate over into the technology industry starting to take our community's needs seriously as well."
After all, tech touches practically every aspect of our lives, including how we consume entertainment. When accessibility consultant Joel Isaac lost his eyesight six years ago, he thought he'd never be able to watch movies again. Until recently, streaming platforms like Netflix and Hulu didn't include audio description, a separate audio track that narrates the visual elements in scenes without dialogue. But after being hit with major lawsuits, the companies pledged to add audio description and make their sites and apps accessible via screen readers. HBO Max recently agreed to do the same following a lawsuit settlement earlier this year.
"Even without looking at the screen," Isaac said, "I can understand and I can be included in watching a movie."
Thanks to screen readers and a growing number of accessibility features on iPhone and Android, Isaac is also able to use the handheld devices he'd relied on before losing his sight, and can easily switch between the two systems. He says accessibility on these devices has improved significantly over the last decade.
Apple, for instance, launched a screen-reading technology called VoiceOver on the iPhone 3GS in 2009, which helps blind users navigate their device. The iPhone maker has since released a handful of other features, including one that lets people who are blind or low-vision detect others around them. Google has also released apps like Live Transcribe, which provides real-time speech-to-text transcriptions for people who are deaf or hard of hearing, as well as Lookout, which helps people who are blind or low-vision identify food labels, pinpoint objects in a room and scan documents and currency.
"Having those tools and having things set up in a way where I can experience it, that makes a big difference to me," Isaac said. "I've been depressed when there are things that I want to do and I'm just totally blocked because I was never considered in that experience."
He notes that some companies make the mistake of viewing accessibility as a checklist, or brush it off as something they can work on after fully building a product. But he says it's much harder to add fixes after something's been built.
Twitter, for instance, came under fire earlier this year after it unveiled its new voice tweets feature, which people in the disability community were quick to point out lacked closed captioning and was therefore inaccessible. In response to criticism, Twitter initially said it was "exploring ways to make these types of tweets accessible to everyone." That prompted one disability rights advocate and lawyer to respond by saying, "You don't, as a matter of civil rights law, get to roll out an inaccessible feature and then, only later, make it accessible." It was only after significant pushback that Twitter said it would add transcriptions.
Experts have long emphasized that one of the most important ways to avoid these kinds of situations is to include people with disabilities from the start.
"It's impossible to effectively design products and services for the 1 billion disabled people on the planet without hiring them," said Meenakshi Das, a disability advocate.
Social media companies are slowly getting to where they need to be, but there's still a long way ahead. Earlier this year, Instagram added automatic captions to IGTV, though Lee says she'd like to see automated captions on Instagram Stories, too. These are features advocates say can benefit everyone, not just people with disabilities. In fact, a Verizon Media survey last year found that 92% of Americans view videos with the sound off on mobile devices. Other accessibility features Instagram has added include automatic alternative text, which lets people with visual impairments hear descriptions of photos through their screen reader while using Feed, Explore and Profile. The company also rolled out custom alternative text, enabling users to add stronger descriptions of their photos when uploading.
Other platforms like Google Meet, Google Slides, Skype, PowerPoint and Zoom have added live captioning and transcriptions to help people with hearing loss fully engage in conversations and presentations. Zoom also now lets users rearrange and pin multiple videos so they can keep an interpreter and speaker in the same spot, no matter who's talking. These features have become even more critical as the coronavirus pandemic has made people more reliant on video chat services for meetings, classes and virtual hangouts.
Both the tech and entertainment industries are ripe for change, given the widespread focus on promoting diversity and inclusion. For the last several years, tech companies have been working to increase the number of women employees. Those movements have expanded to include people of color, and disability is now starting to enter the conversation, too.
"There's this disruptive moment that makes room for some hopefulness in this area," said Jutta Treviranus, director of the Inclusive Design Research Centre, which works to ensure new technologies are designed inclusively. "It's so urgent to get whatever we can into this moment."
That momentum is inspiring people like Lee to continue to push for progress across both entertainment and tech, and to be an active part of change that's long overdue.
"I looked for [disability] representation as a kid, and I never found it," Lee said. "I like to think I developed a brand that the little me would be proud of and would see as a role model."