It’s 8 o’clock on a Wednesday morning and a paratransit service vehicle pulls up to the front door. This is how Jensen Caraballo, a wheelchair user, gets to work and just about anywhere, outside of his apartment building. Depending on the day, or the driver, he will either make it on time or have some explaining to do.
The 24-year-old was born with spinal muscular atrophy, type 2. As a teenager his family started having a more difficult time meeting his needs. He often got sick, and he was losing weight. His doctors thought taking him out of the home would be best. At just 15 years old, Caraballo was forced to live in a nursing home.
"I finally moved in, went into my room, and I had just a box, that was it. And they kept saying this is your new home.”
Caraballo compared it to a jail; what he thinks being locked up would be like. He says you had a time to get up, a time to eat, and a time for bed. He lived in the facility for eight years until friends helped him find housing and a home health aide program. The government calls his new apartment building "accessible" and says it was built to accommodate people like him, with different mobility needs. But Caraballo struggles to navigate the fairly small space, and can barely access or turn around inside his narrow kitchen and bathroom.
"I would be able to live a fuller life, if I can be integrated into the city where I'm from."
Lack of Rural Access
Over an hour away from Jensen’s apartment lives Michelle Fridley. She is a disability rights advocate who ended up using a wheelchair nearly 15 years ago, after a single-car accident left her a quadriplegic. Fridley was nine months pregnant at the time. Her baby girl, Felicia, survived, and the family began adjusting to a series of home modifications.
"First I lived in a rural house, and my mom had to get ramps to get in. Then I had to go with bed baths. My mom fought with the insurance company who was telling her that it was not medically necessary for a person to shower, as we were trying to get the bathroom modified,” Fridley recalls.
The Americans with Disabilities Act mandates five per cent of all new subsidized residential buildings must be accessible. That number is being met in terms of new construction, but when compared with the number of older homes across New York State, there’s a significant gap. The laws fail to accommodate for the increasing number of people living with physical disabilities, and senior citizens who want to grow old in the place they have called home for years.
Visitability
An architectural design and research team at the University at Buffalo is proposing the idea of visitability. It represents a basic level of access, aiming to ensure that people with mobility needs can visit any home. Jonathan White, of the school’s Center for Inclusive Design and Environmental Access, explained that means having at least one half-bathroom on the ground floor and one entrance to the home without steps.
“We think that taking baby steps might help people go on board with it. If it’s just $100 extra to make the house visitable, people might be more willing to do that than let’s say having to put a full bathroom on every first floor, or having grab bars installed [in bathtubs] immediately or certain kitchen requirements,” White added.
Michelle Fridley had to move from a more rural county on the New York Finger Lakes so that she could have full-time assistance around the house. Despite the extra help, her mobility issues linger. In the winter months at Fridley’s apartment building, you can often find heaps of snow blocking the curb ramp she uses to enter the parking lot.
Conversations with Fridley and Caraballo reveal that it all boils down to two factors: quality of life and what one can actually afford. The lack of housing and transportation options for disabled people is also a sobering reality that no matter where you live, if you can’t walk, it’s easy to feel like a fish out of water.
And as Jensen Caraballo puts it, “I would be able to live a fuller life if I can be integrated into the city where I’m from, Rochester. I want to be right at home and closer to my job where I can access public transportation - or just ride my chair to work instead of having to rely on transportation to come out here.”
This story was originally published on Innovation Trail.
https://www.youtube.com/watch?v=KQsWLqEHiiU
