Living Independently After Maria

According to the U.S. Census Bureau, 15.3% of Puerto Rico residents under 65 have a disability, a rate higher than anywhere on the mainland. About a third of those people, it reports, have trouble with basic tasks like bathing and dressing. And Puerto Rico’s disabled population was especially vulnerable to the havoc wrought by Hurricane Maria.

The New England Journal of Medicine estimates that, of the 4,600+ deaths that resulted from Maria, a third or more happened because of interruption of medical care. During and after hurricanes, the authors wrote, the elderly and people with chronic illness are especially likely to suffer and die. Without electricity, dialysis machines don’t work and refrigerators can’t keep insulin cool. When debris blocks roads, people can’t get to hospitals or pharmacies.

And according to Milly de la Torre, the resource director of Movimiento Para El Alcance de Vida Independiente (MAVI), most of the emergency shelters open after Maria didn’t have wheelchair ramps, nor did most shelter staff and volunteers know sign language or how to to accommodate disabled evacuees.

During an information-gathering meeting at MAVI for Government Accountability Office workers assessing the government’s response to Maria, an attendee from the Puerto Rico Developmental Disability Council said FEMA subcontractors at the shelters operated in a “survival of the fittest” mindset, neglecting to bring food to bedridden evacuees and allowing mange and other contagious diseases to spread among evacuees who couldn’t clean themselves. Plenty of Puerto Ricans were poor and disabled before Maria, the attendee said, but the hurricane revealed just how ill-equipped Puerto Rico and the U.S. government were to help those Puerto Ricans.

Ten months after Maria, Puerto Rico is still rebuilding. In rural areas, an aging power grid riddled with weak spots and roads still damaged from the storm continue to threaten the daily lives of the disabled people who live there. One client of MAVI’s office in Caguas, in Puerto Rico’s Central Mountain Range, only started getting electrical service again in late May. After nine months without power, her friend said, she cried when the lights came on. Another client who visits the Caguas office doesn’t know how he’s going to get there any more; the Pepsi factory near his house in Cedra closed in February and the bus line from Cedra to Caguas closed with it.

The power and transport infrastructure in San Juan, the commonwealth’s capital, is on more stable legs than in the country, but accessibility problems still make life in the city a hassle for disabled residents. Although blue-painted curb cutouts can be found throughout San Juan, many sidewalks are too narrow for wheelchairs. Roads, already not the safest alternative to sidewalks, can be too bumpy for wheelchair travel. The historical district, with cobbled streets and tiny sidewalks, is virtually impassable for wheelchair users.

The roads are dangerous for people with other kinds of disabilities, too. Traffic lights around the city are still dark, causing traffic jams and increasing the risk of accident. Wilfredo, a blind MAVI employee, says the hardest part of getting around the city is getting cars to stop for him when he crosses the street. Drivers either don’t know what his white-and-red cane means, or they simply don’t care.

Better disability literacy, Wilfredo says, would make San Juan safer for him and his clients. He teaches independent living skills to blind and visually impaired clients at the San Juan office, ranging from personal hygiene and cooking to using assistive software to browse the Internet.

Some of the non-profit’s services, like its sign language class, are open to abled people who want to help out, but the majority of services are run for, and often by, disabled people. In addition to independent living skills and sign language, MAVI gets donated assistive devices to people who need them, modifies people’s living spaces to be more accessible, and offers ADA legal consulting.

MAVI also offers classes through their Leadership Academy, a program based in the University Rio Pedras Graduate School of Rehabilitation Counseling. MAVI San Juan staff Angel and Miriam host a small class of disabled students, teaching on topics that will help them to advocate for themselves and their community. After watching a video about common job interview mistakes, the students vigorously debate what to wear to an interview and whether it’s a good idea to mention that you still live with your parents. Then they move on to “sunshine laws” and the difference between public and private sector organizations. What’s important to do good work, Miriam asks? Time management and soft skills help, but most of all she wants her students to cultivate “una actitud positiva.”

Meanwhile, MAVI Caguas employee Mildred is coordinating outings with a bigger group of clients: Camp MAVI, a two-week day camp for adult clients they hold every year in early June. Most of the campers are in their 40s, Mildred says.

Campers often bond quickly. Mildred points out two campers laughing as they come out of the butterfly garden at Luis Muñoz Marín Park during a field trip. “These two were strangers when they met, but are already close.”

Julio, the father of one of the MAVI campers, said the camp group is like a family. “People come back every year.”

The campers splash through the water and gossip in the shade at Playa Luquillo, a beach with a pavilion designed for mobility-impaired bathers, but the fun is dampened by the knowledge that camp will be ending soon. Mildred says the campers are always asking if camp can last longer than two weeks. She wishes it could, but Camp MAVI is a big strain on MAVI’s resources, especially because the organization continues to offer the rest of its services during camp.

But, despite finite funding, the access limitations built into Puerto Rico’s cities and mountain towns, and the damage and trauma done by Hurricane Maria, MAVI continues to do its best to promote independent living. By helping their clients develop the skills to move, communicate, work, and self-advocate, they don’t just build disabled autonomy. They build disabled community and hope.

This project was made possible by a grant from VII Foundation and the Institute of Global Leadership at Tufts University. You can get in touch with MAVI through their Facebook page.