Jensen Caraballo has spinal muscular atrophy type 2, and he's used a wheelchair since he was a kid. He's also on a fixed income.
Though Rochester, New York often ranks high on lists of cities with the most affordable housing in the United States, for Caraballo, affordability isn't his only criteria.
"You know, if they're accessible there just not affordable and if they're affordable there just not integrated with everyone else.”
Caraballo calls his concrete apartment complex a "high rise ghetto." There are no steps to get in, and the elevators accommodate wheelchairs, but Jensen still has trouble moving through his apartment.
"Alright so this is my kitchen. As you can see the kitchen is very small. There's enough space for me to drive my wheelchair in but there's no way that I can turn around to open the refrigerator. I can't open any cabinets or anything, and I can't reach my sink."
Even the door to his bathroom is too narrow for his wheelchair to fit through, but this small apartment – several miles outside the city – is a big improvement on the nursing home Jensen lived in for most of his teenage years.
"So I was 15 years old, and that's when they decided that living there would be the best thing for me. I was in high school. I wanted to stay close to my friends and, you know, that was hard.... I was there only because I didn't have anywhere else to go, not because I was sick."
According to the Center for Medicare and Medicaid Services, the number of people under 65 in nursing homes has risen by more than 20 percent over the last decade.
When Caraballo was finally able to get out of the nursing home, he found there was a real lack of affordable, accessible housing.
The Department of Housing and Urban Development requires that five percent of public housing built with federal assistance must be built to comply with certain accessibility standards. Jonathan White of the Center for Inclusive Design and Environmental Access say that these regulations are long out of date.
"They came up with the 5% rule based on some research back in the 60s back when the rule was first developed and found that about 5% of people perhaps needed some sort of accessibility accommodation so they said ok 5% of our housing should be accessible."
Much has changed since then – census data shows it’s more like 20% of the population, even more among seniors. In the 1960s, medical equipment was different, too.
"There was only one wheelchair - the Everest and Jennings Standard Hospital wheelchair."
One wheelchair with one set of measurements. Standards have been updated as mobility devices have gotten larger, but buildings only need comply with the standards in place when they were built.
Isolation vs Integration
For Caraballo, the issues within his so-called accessible apartment are only part of the problem. He wants housing that's more integrated into the community. He works and hangs out downtown, and right now he relies on paratransit to get him there and back. He says it can be a long process, and he wishes he had housing that was more integrated, instead of pushed to the outskirts.
It wouldn't just be good for him, he says, but the whole community. Caraballo thinks that this kind of segregation perpetuates discrimination against people with disabilities.
"We want to live and work right by you. We want to start families. We don't want your sympathy, we want your respect."
Accessible and integrated communities can’t be built overnight, but both Caraballo and White are playing a long game. They agree that by adjusting standards and striving for inclusion, we can intelligently plan our cities so that in the future, everyone can have more choices.