Josh Basile: Sharing the SCI Connection

NM0812_joshIt’s not often a quad is seen rolling the halls of the U.S. Congress — in protest maybe, or for a special event — but Josh Basile, a C4-5 quad, became a regular on Capitol Hill this past spring when he had the opportunity to work with one of the biggest supporters of disability legislation in the U.S. Senate, Sen. Tom Harkin — a Democrat from Iowa who has been a champion of disability rights since winning his first term in 1985.

Basile’s journey — from breaking his neck in 2004 after being tossed by a wave to working alongside some of the most powerful people in the U.S. government at the age of 26 — was no small feat. But even more impressive is the transformation, or re-working, rather, of his original life plans.

Growing up in Montgomery County, Md., Basile had one of those idyllic childhoods. “My childhood was filled with sports, girls, and a little studying in between,” he jokes. He fell in love with tennis and went to play for the Skidmore College tennis team, a AAA-tier school in Saratoga Springs, N.Y., after graduating from high school.

He thrived on living life to the nth degree when in school. “I was very active, always on the move, didn’t like to stay still.” After Basile’s injury while on summer vacation with family at Bethany Beach, Del., he channeled his restlessness into his recovery process, pursuing small accomplishments to stay motivated.

“From the beginning, I was absolutely focused on getting better. I took the smallest accomplishments and turned them into big achievements, like getting off the ventilator, saying my first word, drinking my first soda, eating my first meal, blowing a cotton ball an inch further through a straw and completing 10 shoulder shrugs.” Ten months after his injury, when he realized how difficult the first few months of having a spinal cord injury can be, Basile decided to found the Determinded2Heal Foundation — to help those with spinal cord injuries and their families understand the overwhelming world of SCI.

Knowing his Skidmore days were behind him, Basile enrolled in Montgomery Community College near his parents’ home six months after his injury. “I began taking a poetry course to see if I was ready, and to provide an outlet to express myself.” He discovered he was more than ready. Basile went on to take classes for two and a half more years at MCC, then transferred to the University of Maryland, College Park, where he studied for another two and a half years, graduating cum laude with a bachelor’s in communication and founding the University of Maryland Student Society for Stem Cell Research while there.

Law School Beckons
A bachelor’s degree was just the beginning of Basile’s educational pursuits. Toward the end of his Montgomery College days, he decided he eventually wanted to go to law school. “I was motivated by another quadriplegic in my area, Tim Strachan, who broke his neck on the same beach as I did, attended Montgomery College, then College Park where he was a communication major, graduated from Georgetown Law, got married, and now has two little girls. I wanted to follow in his wheel tracks. It was motivating to see someone else go down that road and come out on top. His actions made the path seem more realistic and possible.”

NM0812_josh2And law made sense for his abilities. “I chose law because I’m limited in what I can do physically, but mentally I’m stronger than ever,” he explains. “I felt that my best asset was my voice, and I decided that the best way to bring my voice to the next level would be through a legal education. A law degree allows me to pursue many different career paths. I like the idea of having options.” Basile chose to attend David A. Clarke School of Law, a public interest law school in Washington, D.C.

Upon entering law school, Basile learned quickly things were going to be different. “I was surprised to find that all of my previous study habits and routines would not be compatible with law school. Law school involves absorbing and simplifying hundreds of pages of dense material in a short period of time. I was forced to develop brand-new study habits and routines in order to adapt to these new conditions and survive law school. During my first semester I found myself trying hundreds of different techniques and study habits to see which were the most effective and most time efficient.”

Technology has played an important role in his studies. “All of my textbooks are in electronic form. I have copies on my iPad and on my laptop. And my iPad is fastened to a goose-neck arm attached to my wheelchair, with the iPad always on my lap throughout the day,” he says. He also uses several different apps on his iPad to take notes. “I use one special app that actually allows me to take notes and audio record the class. When I come home to revisit my notes, all I have to do is click on any of the words that I jotted down and it will automatically resume the audio recording at the moment that I wrote that specific word down.”

He also uses Dragon NaturallySpeaking Professional to type, as well as his favorite program, Kurzweil 3000, which reads aloud electronic books. “I typically have to read around 60 pages a day per class (300 pages per week). Without this reading software, I would probably fall asleep halfway through all my reading out of pure exhaustion.”

To the Hill
Basile knew attending a public interest law school in Washington, D.C., would bring some exciting opportunities, but he had no idea what was in store when he signed up for two semester’s worth of mandated clinics. Basile got his first choice in the lottery system — the legislation clinic —and knew exactly what he wanted to do: work with the HELP committee, the Senate Committee on Health, Education, Labor & Pensions, chaired by Sen. Harkin.

Josh Basile’s journey has so far included launching two websites for people with SCI and working on legislation with disability champion Sen. Tom Harkin (left).

Josh Basile’s journey has so far included launching two websites for people with SCI and working on legislation with disability champion Sen. Tom Harkin.

After receiving a reference from Professor Robert Burgdorf, one of the original drafters of the ADA, Basile landed an interview, but getting to the interview was a hilarious disaster. “As I got off the elevator in the Hart Senate building, my wheelchair computer control system short-circuited and shut down. I was 100 feet away from the HELP committee office with 10 minutes remaining before the interview.”

He ended up calling the office assistant, who put his chair in manual mode and pushed him to the interview. “I waited at the table thinking that this could not get any worse. Luckily, I nailed the interview and let the supervisors know of my wheelchair problem. And the next thing I knew, the top supervisor was wheeling me to my car, which was about a half-mile away through different elevators and hallways.” The supervisor’s name was Andy Imparato, the disability policy director on the HELP committee and former executive director of the American Association of People with Disabilities. “During that time, I had an extra 10 minutes of one-on-one time with him, which added to my interview.”

Basile was awarded a legislative clerkship position with the HELP committee that lasted from January to April 2012. “I had the opportunity to interview expert witnesses in preparation for two committee hearings — ‘The Promise of Accessible Technology’ and ‘The State of Olmstead Enforcement,’ as well as conduct research for hearings and legislation,” he says. “I also researched and drafted legislation expanding minority-owned small business opportunities for the disability community and attended multiple meetings with nonprofit groups, government agency officials and disability associations.”

Being able to work with the HELP committee exposed him to the inner workings of the government. “I’ve learned that timing is everything and that compromise is necessary,” he says. “And I learned that Sen. Harkin is a great man and champion for the disability community. He tries to make sure every piece of legislation addresses or includes a disability component.”

Wearing Another Hat
Amidst his law school studies, Basile has been quietly plugging away on another project — SPINALpedia — an offshoot of the nonprofit he founded, Determined2Heal. During the summer of 2007, a research associate at the National Rehabilitation Hospital introduced Basile to Brittany Martin, 26, whose father had a spinal cord injury. She was also passionate about creating a support network for those with SCI. She had been affected early on — when she was only 12 — by her dad’s injury. “Immediately after the accident I was terrified,“ she says. “My little brother died on the scene. When I saw my dad the first time the next day, I began to understand what was going on, but it wasn’t until the final verdict of paralysis from the doctor’s mouth that I began to process it.”

From the onset, Martin wanted to be there for her dad. “I committed myself pretty early to the idea of helping my dad recover. I liked feeling a part of that and feeling like I was valuable in the wake of the whole trauma. The first thing I said to him when I saw him the next day was, ‘Dad, you have to get better and come play with me,’ and he cited those words many times during his recovery as words that kept him going.”

As their family adjusted to the injury, Martin went on to attend Harvard to study linguistics. It was there that she received support to get her idea for a SCI mentoring resource off the ground. “I had been working on the original concept of SPINALpedia during the spring semester of 2007 in a social enterprise class,” she says, “I ended up getting some money from Harvard that summer to try to develop it further.”

When Basile met Martin, a connection was made instantly. “Josh and I got along off the bat, sharing the SCI connection in addition to the commitment to want to help more people,” she says. They decided to create a mentoring network together soon after their first meeting. They utilized Martin’s original plan — a mentoring website that networked hospitals — with the goal of improving the quality of life for people with paralysis.

It took three different versions of their website and experimenting with different types of software to get to where there are today — a finely categorized collection of streaming videos. “The idea was very dynamic and constantly changing, based on external factors,” adds Martin. “Once we heard about hospital bureaucracy, we gave up the idea of networking hospitals and took another avenue through videos.”

Their end product is a site that contains thousands of spinal cord injury videos by people with SCI. “YouTube is too unspecific if people want to find content that’s actually useful,” says Martin. “Josh and I are working to save people time, filtering useful content and teaching people things others may have taken years to learn.” The videos are categorized by mobility level — partial to full arm control, partial to full hand movement, full or partial leg movement, full to partial trunk control, and ventilator-use.

Basile and Martin are taking advantage of the rise of video sharing and prevalence of video taking (like with cell phones) and giving people a place to put information that will be immediately relevant to others. “Mentoring happens naturally, but it shouldn’t be left to chance in terms of being ‘lucky enough’ to get hurt somewhere near a good hospital or with a mentoring program,” says Martin.

For Basile, juggling school and creating an extensive video network have certainly been a test. “It’s been extremely tough,” he says. “I consider my schoolwork to be my three meals of the day, but SPINALpedia is my dessert.” From choosing a career in law to creating SPINALpedia, Basile has been focused on paying it forward.
“Many people who came into my life after my injury showed me what was possible. Now I have an opportunity to give back.”

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