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Redefining Inclusion for Disabilities That Can Be Harder to See

It wasn’t roaring lions or butting goats that sent 6-year-old Avery Shipley into a tailspin last summer at the Fort Wayne Children’s Zoo.

It was a sudden Indiana thunderstorm that crumbled his composure, when he and dozens of other summer campers scrambled for shelter under a pavilion. As the campers crowded under a roof pinging with rain, Avery “just completely shut down. He froze,” said his mother, Kimber Shipley, 36.

Help was within reach. The zoo staff had a pair of noise-canceling headphones at the ready and helped Avery put them on. With one element of the chaos muted, he was able to regain his equilibrium and rejoin the group. After the incident, he was diagnosed with attention deficit/hyperactivity disorder, his mother said.

For decades, zoos, museums and other venues have immersed visitors in multisensory experiences and exhibits. Blending visual elements with sound, touch, smell and movement lets visitors absorb information in the way they prefer and is widely considered to be more engaging than staid dioramas and wall labels.

But the same environment that engrosses most people can be overwhelming — even threatening — for people who have trouble processing stimuli. Sound effects, high-contrast lighting, unpredictable motion and even unexpected smells — everything that makes a multisensory environment a thrilling experience for many people — can be too much for those with autism, chronic migraines, ADHD and other issues. Now, a growing movement aims to offer parallel, adapted options for those who have sensory-processing issues so they can mix and match their experiences any time they visit.

Until recently, the standard tactic has been special hours, often offered for people with autism, with the intention of providing a softer and less crowded experience. As venue staffers learned more about what autistic visitors said helped them have a full-fledged experience, they started to realize that many more people could benefit.

“Being more accessible helps everybody,” said Matti Wallin, the accessibility programs manager with the Houston Museum of Natural Science. “It’s creating programs and resources that don’t have people feeling like they’re separate, but that are built into the experience.”

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When Kerry Magro, 34, of Hoboken, N.J., was 4, he found hands-on museum exhibits both intriguing and terrifying. Mr. Magro describes himself as an “extroverted autistic,” and he said becoming engulfed by sensory input often overwhelmed him. “It felt like being in a blender,” he said, “where you felt like you couldn’t find a center. Like a free-fall.” His parents hit on the strategy of a “sensory brush,” a small, soft brush that he used to self-soothe by creating a single sensation to focus on. The brushes helped him when he was out in public so he could navigate intense experiences.

Now, Mr. Magro relies on certain types of music to re-center. And, as a professional speaker, he sees neurodiverse adults as the next inclusion frontier. After all, he pointed out, people’s neurological capabilities change with age, injuries, illness and life experiences. Children with sensory-processing issues grow up and continue to go to the same kinds of events, museums, and venues as everybody else, so accommodations need to evolve along with them, he said.

Mainstreaming visitor experiences means tailoring accommodations to visitors’ own definitions of their needs. The noise-canceling headphones that helped Avery are part of a standard kit of tools available — as needed or in advance — to help combat sensory overload. Venues are adapting their floor plans to include quiet spaces where people who feel overwhelmed can temporarily step out and maybe look at subtitled videos of exhibits instead of coping with jostling throngs. And some cultural institutions are starting to design new exhibits with sensory awareness built in from the start so that visitors’ experiences can be adjusted based on their sensitivity.

“It’s an additional thought process beyond the Americans with Disabilities Act,” said Kimberly Harms Robinson, who directs public relations for the Children’s Museum of Indianapolis. A.D.A. fulfillment involves things like ramps and lifts, which enable disabled people to access and navigate a building. Accommodating invisible and situational disabilities is grounded in including rather than complying, said Ms. Harms Robinson, and has turned into an ongoing process rather than a “one and done” adaptation. In designing its exhibits, the Children’s Museum now consults with an advisory panel that represents a variety of disabilities. The staff ask for input on elements of design, such as how to adjust sound volume both on its own and within the context of competing noises that visitors are likely to encounter in a gallery.

The Museum of the American Revolution decidedto default to inclusion by equipping guests with guides that they can use to tailor their experience according to their sensitivities.Credit…Museum of the American Revolution

Before the Museum of the American Revolution opened in Philadelphia in 2017, its exhibit designers had the luxury of thinking through how recreations of dramatic Revolutionary War events would play out for visitors with various sensory-processing issues, said Tyler Putman, the senior manager of museum gallery interpretation. “There are cannon noises. You walk on the deck of a replica ship and you feel and smell how it was,” he said. “For some people all those experiences make it visceral and real. But for others, it’s a nightmare.”

The museum decided at the outset to default to inclusion by equipping guests with guides that they can use to tailor their experience according to their sensitivities, said Mr. Putman. One of its most successful innovations has been maps that highlight potentially problematic areas: spots where visitors will encounter flashing lights that might trigger reactions, as well as galleries that are darker. “It tells you how substantial those areas are for the senses,” said Mr. Putman. “And it also let you know which galleries have scenes of violence and galleries that have life-size mannequins, which some people find disquieting. It’s a tool for which areas to target to go to or to avoid.”

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Who sets the standards?

For travelers trying to determine whether an attraction is for them, there is no single seal of approval or recognized standard for what it means to be inclusive of people with sensory-processing disabilities. Instead, a handful of organizations has cropped up, each with its own standards and training programs. While the organizations compete with each other, in many instances they have arrived at similar conclusions and offer similar tools and programs.

KultureCity, a for-profit company based in Birmingham, Ala, and founded by parents of children with autism, has trained and equipped more than 900 organizations, said the executive director, Uma Srivastava. The organization’s hallmark is its “sensory bag” filled with gear that staff and visitors can quickly use to quell sensory overload, like the noise-canceling headphones that helped Avery Shipley, or sunglasses that block strobe lighting. (Similar types of sensory bags are widely available through educational supply companies.)

The International Board of Credentialing and Continuing Education Standards, based in Jacksonville, Fla., offers online certification for people who work with autistic and other disabled people, as well as to travel industry employees. Hotels, attractions and even whole towns can become certified autism centers. According to the IBCCES president, Meredith Tekin, it has trained and certified more than 138,000 corporate, health care and travel industry staffers in 82 countries. It also runs Autism Travel, a website that recommends destinations the IBCCES has credentialed and offers families additional tools and strategies for navigating transportation, hotels and various types of activities.

The Champion Autism Network is a nonprofit founded six years ago in Surfside Beach, Fla., that offers training and certification for travel destinations that want to be inclusive. It has just introduced a suite of programs in Myrtle Beach, S.C. It funds its autism advocacy by selling training programs, said the executive director, Becky Large.

In 2016, the Hidden Disabilities program launched at London’s Gatwick Airport as a way to make travel easier for people with neurological differences, hearing loss and other conditions. They make themselves known by wearing lanyards bearing the program’s logo, a sunflower on a green background. The program has now expanded to employers of all sorts in 22 countries, including the United States. Hotels, airports and other travel suppliers participate in the program by paying a licensing fee and by asking staff to watch three two-minute videos intended to equip them to better help travelers with special requests.

The mishmash of self-certified programs risks consumer confusion at best, said Roger Ideishi, the director of occupational therapy and a professor of health, human function and rehabilitation services at George Washington University, who consults with major museums. “We’re still discovering how neurodiverse people navigate through the community,” he said, “We really don’t have set baselines. The only best practice is ongoing dialogue with all local stakeholders.”

Many cultural organizations take their cues from the annual Leadership Exchange for Arts and Disability conference organized by the Kennedy Center in Washington, D.C. The conference aims to inform all cultural and entertainment venues of new ways to include neurodivergent people, said the conference’s director Betty Siegel.

Ten years ago, the conference began integrating strategies for including people with autism into its agenda, which previously had focused mainly on physical and hearing accessibility. The autism-friendly approach replicated the model that seemed to work for serving the deaf and hard of hearing: offering a performance specifically for that audience and its perceived needs.

“We’d say, ‘Every Tuesday we’ll have a sign language interpreter,’” said Ms. Siegel. “But that’s not empowerment. That’s not choice. What if you can’t come on Tuesday? Now, the trend is not only to offer scheduled performances with accommodations — because there are advantages to consistency — as well as on-demand services.”

The lesson is that in order to get a better grasp of what people with various disabilities need, venues have to relinquish their status as experts about their own operations and listen to what disabled people say works for them.

Quiet spaces are a good place to start, but are typically most helpful for young children, said Dr. Ideishi. “You’re making a lot of presumptions about what is needed or not needed in a quiet space,” he said. “Some people actually need more sound to organize and process what’s going on. There’s so much fluidity within experiences. It’s really about giving people more information so they can make choices for themselves.”

Charlotte, N.C., resident Caele Gambs, 47, is the mother of two teenagers, including a 14-year-old diagnosed with autism when he was three years old. She quickly learned to scale their expectations for family excursions around his tolerance for noise, crowds and intense experiences.

“When the boys were little we missed out on a lot of things. It was such an unpleasant experience to do normative things like seeing Santa, because he couldn’t handle it,” she said. But when a North Carolina mall redesigned a Santa event by opening early, not playing Christmas music and having a Santa coached to allow kids to approach him on their own terms, her whole family could finally have the classic holiday experience.

“It made a typical family event that most families take for granted, something that is just not open to us ordinarily, accessible to us,” said Ms. Gambs. “It made us feel like a regular family.”

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