Architectural barriers—do they still exist? Ask Samuele. He recently turned 18 and lives with Duchenne muscular dystrophy, a rare genetic disease that causes progressive muscle degeneration. Every day he navigates obstacles that prevent him from moving independently in his wheelchair. A couple of years ago, he decided to solve the problem himself: he designed and built lightweight plastic ramps on his 3D printer.
«For someone in a wheelchair, even a small step is a huge barrier, » he explains. «You get angry when all you want is to grab pizza with friends or play cards, but you can't enter a restaurant, bar, or shop because they're not accessible. Businesses should have ramps, but most don't. So every time we go out, my parents have to carry a portable ramp that's heavy—about 33 pounds—and hard to transport on a walk with friends. My electric wheelchair weighs a lot too, and it's not easy to lift. » Two years ago, when the organization Parent Project—made up of patients and parents of children with Duchenne and Becker muscular dystrophy—invited him to join their «AutoNOImia» project (funded by the Ministry of Labor to promote social inclusion of young people in local communities), Samuele decided to act on his idea. «I have a 3D printer, and it's something I'm passionate about. So I designed small mobile ramps in plastic—lightweight and easy to carry—that would let me get over that step between me and a decent pizza, or other activities with friends. »
«I drew the ramp on the computer and divided it into two sections, 1.6 and 2.4 inches tall, that stack like LEGO blocks. I can use just one module or both (connected with pins), depending on how high the step is. Then I used software that converts the drawing into code and printed all four modules. The ramps are strong and stable, weigh about 2.2 pounds total, and fit in a backpack. To reach my friends downtown in Aprilia—about 2.5 miles from home—my parents still have to drive me. At school, I take the municipal minibus. » But some obstacles are insurmountable. «We were forced to move to the outskirts, » says Samuele's mother. «Our old apartment, in the city, was on the second floor with no elevator. When we asked the city for a grant to install one, they said there were no funds. Meanwhile, we were constantly hauling the stairlift up and down. We also needed other work—widening the bathroom, since Samuele moved from a manual to an electric wheelchair as his condition got worse. Four years after we applied, the city finally said the money was available. But we'd already moved. »
The elementary school didn't have an elevator either, or a stairlift. «Samuele's classroom was on the ground floor and he used a side entrance, but the computer lab was on the first floor with no elevator. Every time he had a lesson there, I'd have to carry the stairlift from home so he could attend, » his mother recalls. «We didn't have accessibility problems at middle and high school. But we find barriers even in the hospital—at Bambino Gesù on the Gianicolo, where Samuele has been treated by excellent doctors since childhood. On the first floor, in the pulmonology ward where he's admitted twice a year for sleep studies and other tests, it's a nightmare getting him to the bathroom because his wheelchair doesn't fit. »
Despite his resourcefulness in overcoming obstacles that others should have removed, Samuele keeps running into architectural barriers. «You encounter them almost everywhere, and you feel angry, but also a bit discouraged and sad, because they keep reminding you of your condition and your difference, » he says. Yet he keeps fighting for his dreams.
«Now that I've used my skills to build the mobile ramps, I want to keep designing and work on other projects. In September I'll be in my final year of high school—science track—and then I'd like to go to university. I want to become an engineer. » Samuele's eyes light up again. «There's online university, sure, but I'd like to take classes with other students. In mid-July I visited an open day at La Sapienza: they offer academic support services for students with disabilities, the classrooms are accessible, and so are the restrooms—though there are a few small issues to work out for personal assistants. Same thing leaving home: right now Aprilia station doesn't have transport services for people with disabilities. This year I couldn't take the train with my classmates on a school trip. Sometimes small adjustments and a little more attention would solve the whole problem. »
Source: Corriere