Haendel’s ability to laugh at setbacks — and fight them — is the result of a lifelong journey that keeps troubles he runs into now in perspective. His mother died of cancer when he was 19, sending him into a spiral of depression, stress, and drug abuse that caused the brain disease that nearly killed him. He also experienced the rare condition, during his recovery from the disease, of being “locked in” — paralyzed but fully conscious of what was going on around him — while doctors and nurses thought he was in a vegetative state for more than nine months.
“I used my time locked-in wisely,” he said. “I got to properly grieve for my mom, went through a lot of issues. … I’m happier now than I was before, which is crazy.”
After Haendel’s friends freed him from the bath stall, the group wondered why there wasn’t an app like Google Maps or Yelp cataloging accessibility features at restaurants and other venues, using crowdsourcing like Waze does. Existing apps didn’t provide the kind of detailed and accurate information people with accessibility issues needed. One of his friends at the table that night was Justin Robinson, who learned quite a bit about app development when he cofounded liquor delivery service Drizly back in 2012.
“We were asking why there’s no Waze for this,” Robinson, 33, said. “This clearly was an experience that an app with user-generated data could solve, and no one had set out to solve it yet.” At Drizly, which he left after selling to Uber for $1 billion in 2021, Robinson had worked on expanding the service and adding new software features.
Robinson started bouncing ideas off developers and designers he knew through Drizly. Scott Slagsvol, former design lead at IDEO, the famous global design firm, came on as a third cofounder. The trio recruited a couple more software engineers and bootstrapped the company with their own money, building an app in about nine months and launching it in early 2023.
Dubbed Ahoi, the app collects ratings and photos crowdsourced from users who file accessibility reports at the level of detail needed to guide people with a variety of physical disabilities. It also lets users input their own needs and returns personalized scores for the accessibility of venues. (The initial focus is on the Boston area, where more than 1,000 locations have already been rated.)
Haendel, for example, needs horizontal bars in a bathroom stall to maneuver on and off the toilet, but some people also need a vertical bar and not all stalls labeled as “accessible” have both. The nightclub bathroom had a large stall with room for a wheelchair and bars on the wall, but the heavy entrance door and the finicky locks posed challenges for Haendel.
He’s hoping people will start adding ratings and pictures to the app — and also to existing apps like Google Maps. “I know you want to take a video of that filet mignon, but also while you’re at it, put in a picture of a single bathroom attribute and help a thousand people,” he said, describing Ahoi’s pitch.
A tremendous number of people could benefit from an app like Ahoi if it caught on and gathered enough venue ratings. According to a survey by the US Department of Transportation, more than 24 million adults have disabilities related to mobility. More than half need to use a walker or cane, and about 20 percent use a wheelchair or motorized scooter.
Boston, with its rough streets and Colonial-era architecture, is a particularly challenging environment. “The four-inch front step is almost a standard in Boston,” said Valerie Fletcher, executive director of the Institute for Human Centered Design. “People will routinely say they are fully accessible when they’re not.”
Haendel never paid much attention to accessibility before 2017, when he was diagnosed with leukoencephalopathy, an infection that attacks the insulation around nerve cells in the brain. In Haendel’s case, the root cause was the depression and stress of working as a chef, causing dark feelings that led to escalating drug abuse. The disease was brought on after his extensive freebasing of heroin, which allowed unknown toxins mixed with the drugs into his brain. Within months, his limbs were paralyzed, and speaking and eating were almost impossible. Hospitalized and requiring a feeding tube, Haendel’s health declined and doctors expected the illness would be terminal within six months.
He became unable to communicate and was treated as if he were in a vegetative state. But he was fully conscious. Finally, in July 2018, he was able to move his wrist slightly and blink, drawing the attention of doctors. As he recovered over the next several years, his case became celebrated as an example of locked-in syndrome, and he was featured on “CBS News Sunday Morning.”
His condition improved, and in 2021 Haendel was discharged from rehab and moved into an apartment near TD Garden where he met Robinson, who lived in the same building. He quickly learned the challenges of life in a wheelchair. Trying to use the directions in Google Maps got him into trouble multiple times when sidewalks lacked curb cuts or subway stops had no working elevators.
“Walking directions are a lot different than rolling directions,” Haendel said. “Potholes can tip over a chair. The quickest route isn’t always the safest route.”
So far, Ahoi’s focus is on attracting as many accessibility reviews as possible at places in the Boston area. Eventually, the app will branch out to other cities. (The team would like to add Waze-style route directions later, although that is a “much more challenging technical element,” Robinson said.) Advertising is likely to be the main revenue source once Ahoi attracts a significant user base, Robinson said. Further in the future, insurers might pay for users to get out more and improve their quality of life, or the app could perhaps collect fees for bookings and reservations.
Some earlier efforts have tried to take on the accessibility data challenge. The website WheelchairTravel.org has advice for people traveling to 25 major US cities, including Boston, Dallas, and Seattle. The city reports cover general accessibility information for public transit systems and tourist destinations, but not specific hotels and restaurants. The website AccessNavigators.com collects crowdsourced accessibility information as Ahoi does, but has guidance available for only a few cities in Maine, New Hampshire, and Massachusetts.
Robinson and Haendel said they hope their app’s modern design and personalization features will attract many more users. People without disabilities can also sign up and provide ratings. But getting enough users on board isn’t the only challenge for Ahoi: The app’s data also will have to be accurate and updated often enough for people to rely on.
“One of the most challenging things about collecting data about built environments — they are often in flux, and features or amenities that are here today may be gone tomorrow,” said Aimi Hamraie, a professor at Vanderbilt University and director of the school’s Critical Design Lab.
Ultimately, the goal is to ease the anxiety of people with disabilities so they can go out and enjoy themselves more often, Haendel said.
When he took a Globe reporter to revisit the infamous bathroom, getting there required entering Guy Fieri’s restaurant and then using a ramp through the Big Night Live nightclub, where a bouncer initially barred the way. The club was closed, setting up for a concert. But a manager recognized Haendel from previous visits and let him through.
Haendel has perfected a move to open heavy bathroom doors that starts with a big arm push, a quick scoot, and a leg kick to get the door open wide enough for him to fit through. Inside the large bathroom stall, he still cannot work the lock easily. “It’s one of my biggest struggles,” he said.
Afterward, Haendel wheeled out to the floor of the brightly lit, empty nightclub to show off a special accessibility section next to the stage where he has watched multiple concerts. The club is conveniently close to his apartment and always has space set aside for people in wheelchairs, he said.
A couple of brass bars fenced off the stage. Haendel pulled himself up out of his scooter, facing the stage, and started to wiggle his butt.
“This is how I dance now,” he said. “This was the first place I danced since I got sick. Right here.”
If Ahoi succeeds in improving data about accessibility, Haendel could have a lot more company at the nightclub.
Aaron Pressman can be reached at [email protected]. Follow him on Twitter @ampressman.