But more than 30 years since its passage, people with disabilities, like advocate Catarina Rivera, say there is still more work to be done—both in the way we accommodate people with disabilities and in the way we talk about them. There’s an important point, for example, to be made about using the word “pride” and not simply “awareness.”
“For me, disability pride means I’m proud of who I am and all the parts of me—defiantly and powerfully. The world tells me I’m less worthy and less valuable and less capable, but I resist all of it,” Rivera says. “People in general who view disability in a bad light can’t even conceptualize why disability pride would happen, so I love that it pushes against their limited thinking.”
Rivera, a disability advocate and educator, started her Instagram account, Blindish Latina, in 2020, mostly with the goal of raising awareness about her own journey with blindness and deafness, accepting her disability, and beginning to live her life as a publicly blind person. Her account helps bust the stereotypes of what it means to be disabled, from how a deafblind public speaker needs to acquaint herself with a new stage, to explaining the difference between alt text and image descriptions, and how to embrace travel and adventure with disabilities.
“I knew that my journey had been really long and that I could share something to both help other people like me and educate people who are unaware of disabilities,” Rivera says. “I felt like there wasn’t enough conversation and enough understanding of blindness being a spectrum.”
Since 2021, Rivera’s audience has grown—she now has more than 30,000 followers on Instagram. That’s when she began to offer her services as a public speaker for conferences and companies on topics like disability awareness, inclusion, and ableism in the workplace. Now, she has a number of initiatives in play, including accessibility consulting, partnerships with tourism agencies to promote travel for those with disabilities, and a free eBook on 12 easy ways to be inclusive.
How her career in disability advocacy started
Rivera’s story with her disabilities is long and winding. She was diagnosed with hearing loss at birth, but at 17, she discovered she had Usher syndrome, a rare genetic disease that can cause hearing loss in childhood, loss of night vision by teenage years, and severe vision loss by midlife, per the National Eye Institute.
Rivera learned all this just before her freshman year at Duke University, which she attended on a full scholarship. It took time to accept and accommodate her new physical reality. On her website, she calls this the pathway from “denial to acceptance to self-advocacy to public advocacy.”
“It was a new element of disability to my life that I was not expecting—the surprise and shock of it was the first thing,” she says. “I was going to a new environment, new friends, and new people, and I didn’t want to deal with the idea that I had a progressive vision disability.”
Talking with Rivera now, you’d find this hard to believe, as she is the font of positivity. But at the time, she refused to even talk about her diagnosis. When she did, she’d utter the same sentence, “I’m going blind,” and would immediately start to cry. “It was very much a tragedy in my mind at the time,” she says.
It wasn’t until after college that she advanced to the next step: acceptance. She moved to New York City, actively choosing a city where she wouldn’t have to drive (before she’d be told to stop driving). She treasured her independence, seeking out other blind people and services from the New York State Commission for the Blind, and started to live life acknowledging she was a blind person.
In her early 30s, she took a job in Midtown (the most crowded part of NYC), but noticed her energy dwindling as she commuted to and from work each day. A potential solution floated through her mind: she could use a cane. But that would mean being publicly disabled—another self-stigma and hurdle to overcome.
“Once I got the cane and I got over that, it was kind of a rush of inner power. I felt really confident in my identity and I saw the cane opened up conversations,” she says.“Looking back, I knew there were lots of disabled people out there that were not accepting themselves. I felt that I should do something with all this capacity that I had, and that’s really what spurred me to do something with my voice.”
How she teaches workplaces to be more inclusive
As an inclusion educator and consultant, Rivera has come to better understand certain obstacles. First, she notes how important it is to standardize accommodations for all—for example, leaving captions on for all meetings or internal videos. I see this firsthand when Rivera and I go to meet on Zoom and I, naively, haven’t enabled captions in advance. She goes through the steps of showing me how to activate automated captions in my advanced meeting settings, but wisely points out this wouldn’t have been a problem had I had captions on for every meeting and not just hers.
Normalizing inclusive procedures in professional life also takes pressure off those with disabilities to constantly disclose they are disabled. Not all disabilities are obvious to the average person. But just because someone’s disability isn’t visible to you doesn’t mean it doesn’t exist.
Rivera’s trainings focus on literal hard skills (i.e., accommodations like captions) and soft skills (like identifying and avoiding common microaggressions toward people with disabilities). When it comes to our daily language, she points out how many phrases unintentionally use harmful words, like “falling on deaf ears,” which, in this case, utilizes a physical disability to mean ignorance. In her personal life, Rivera also notices the built-in biases, like when she’s seated at a restaurant and the host only speaks to her partner and not her.
Even though the ADA solidified civil rights protections for workers with disabilities, Rivera knows firsthand this is simply the floor. “A lot of people in companies don’t realize the ADA is the minimum standard,” she says. “It’s not like you’re doing an amazing job fulfilling people’s accommodations requests.”
“With disability, it’s really important to highlight that, a lot of times, when we’re talking about inclusion, it’s not fancy technology. We need communication, we need information, patience, flexibility—a lot of these things are free.” —Catarina Rivera
How traveling helps her embrace her disabilities
As Rivera built up her online platform and consulting business, she also saw a personal opportunity: the flexibility of life on the road. For the last few years, she’s been traveling full-time, documenting her experiences on Instagram and her newly minted YouTube channel. Most of her work and public speaking events are virtual, allowing her to set off to destinations like Greece, Italy, Colombia, and Honduras, so far.
While abroad, she and her partner try to emulate normalcy as much as possible, by renting an apartment, spending more than a month in one place, and sometimes joining a gym. They plan ahead, creating a document each time they stay in a new hotel or apartment with certain practices—where are the light switches, where do we put our shoes, where are the outlets, are there any obstacles Rivera could trip over? But it’s the adventurous side of travel that Rivera loves and embraces, too. She’s gone snow tubing and curling in Utah, hiking and horseback riding in Colombia, and spent a lot of time outdoors. In each of her videos, she reminds followers that these activities can be accessible for everyone.
Rivera’s activism also plays a role here: Her YouTube channel highlights everyday moments of traveling with a disability, from the importance of curb cuts (a down-graded slope from the street to the sidewalk) to her morning routine before going to a coworking space in Medellín, Colombia. These moments add nuance to what it means to live with a disability, and show a real demand that exists in the disabled traveler market (an industry that may represent as much as $58 billion in unexplored revenue, per a BBC article).
Unexplored by some, perhaps, but not by Rivera. She highlights one particular transportation issue she experienced in Medellín: She was boarding a cable car—the city uses them for public transportation—and missed the first carriage. While she eventually made it into the next gondola, what she needed in that instance was simple: more time, not an elaborate contraption.“With disability, it’s really important to highlight that, a lot of times, when we’re talking about inclusion, it’s not fancy technology,” she says. “We need communication, we need information, patience, flexibility—a lot of these things are free.”
Still, some countries and cities are better-equipped for people with disabilities than others. Rivera occasionally has to decide if she’s willing to travel somewhere she really wants to see even if it’s not accessible. Two years ago, she and her partner visited a few islands in Greece, where it became clear she couldn’t feel fully independent. There were few sidewalks, little public transit, and a lack of lighting; she didn’t feel like she could go out at night by herself. “I don’t like that feeling, so what I try to do is balance it out: I’m willing to deal with inaccessibility for short periods of time if I really want to go somewhere,” she says.
Rivera’s travels have also helped foster brand partnerships with agencies like Delta Airlines and Visit Utah. While these videos have surely been a success from a viewership standpoint, they’ve also exposed Rivera to new audiences perhaps not as well-versed in the world of disabilities as her own community. She has received comments from people accusing her of faking her disability or asking why she would even want to travel as a deafblind person. “What could she even do?” some commenters have said.
Rivera doesn’t internalize the naysayers, but rather, interprets their words as a sign of how vital her work is. “No matter how well I construct my videos, even if I put a disclaimer saying, ‘I have a little bit of vision, but I’m still blind,’ you can’t circumvent those comments,” she says. “I take it as evidence that my work is needed and that we need more disabled travelers.”
What Rivera’s future holds
Although Disability Pride Month is coming to an end, Rivera’s advocacy work is not about to stop. She will be a keynote speaker at the Kennedy Krieger Institute’s October conference on Neurodiversity in the Workplace, offering what she calls a “high-level message about disability inclusion in the workplace.” She also has upcoming travel partnerships scheduled with Claire & George: Accessible Switzerland and Destination Ann Arbor in Michigan.
And while an aspect of disability pride is certainly increased visibility, Rivera’s focus is also on changing the words we use when we talk about the disabled community. There has been a movement in recent years to use terms like “differently abled” instead of “disabled,” taking issue in particular with the prefix “dis.” But she notes that refusing to say “disabled” implies that being disabled is both a bad word and a bad thing.
“Language reflects our underlying beliefs and attitudes,” she says. “Language is an entry point to these deeper conversations, and it provides people with something they can do right away, something that is immediately actionable.”
