Challenging perceptions, building family supports, making custom equipment accessible, and creating programs that foster inclusive participation and self-confidence. This is the work we do each day and the road to inclusion we’re passionate to be on, together.
Welcome to our new blog, where we’ll share our trials, successes, insights, and more. We don’t set out to be an all-knowing voice of everyone, but we promise to keep the conversation on these important topics, realities, and advances going. We hope you’ll stick around for our Reflections from the Road. Let’s start at the beginning.
A Life-changing Accident
I’m Rob Tortorella, founder of Endless Highway. My personal experiences living with a disability have influenced the direction of my life and goals. It’s why Endless Highway exists today and our road to inclusion began.
A year-round athlete since childhood, I found my place, friends, and confidence through sports. Throughout high school, soccer, hockey, and lacrosse dominated my time. Then I narrowed my focus to a political science degree and varsity lacrosse during my four year undergraduate career at the College of the Holy Cross. Winding down on senior year as the captain of the team, a job ready for me following graduation, and a girlfriend I loved, it was an exciting and proud time in my life. I felt invincible.
When I returned home from Boston after graduation, a night of reuniting and celebrating with friends ended in a motor vehicle accident. I sustained a cervical spinal cord injury that caused permanent paralysis and required a 5-month hospitalization and rehabilitation at the New England Regional Spinal Cord Injury Center at Boston University Hospital. During this time, I absorbed a toughness and fortitude from my parents. I also leaned on a support system of other family and friends nearby as I transitioned into an accessible apartment in the Boston-area, using a wheelchair for all aspects of mobility.
My lifestyle, career track, and goals as I once knew them so clearly were upended. I felt stripped raw, questioning who I was, and now who I would come to be.
Finding some guidance and inspiration, I began working under disability rights pioneer Charlie Carr at Northeast Independent Living Center as a full-time advocacy coordinator. In this position, I helped people with various physical disabilities connect to personal care assistance, self-directed care, employment opportunities, discrimination representation, and more, to maximize their independence. The work was healing.
So were sports and recreation. Despite changes to my lifestyle, my desire to participate and challenge myself physically never went away. I started by exercising on my own in accessible gyms that I could find — and there were not many.
By the summer of 1985, I felt confident enough to make a major life transition away from Boston. I was living, dressing, cooking, and driving independently, and saw Rochester, NY as a new city to settle into on my own, with no existing connections or support system. And it was a challenge that required years of building even more confidence, relationships, and community.
At first, I rarely came across anyone else in a chair. As I spent more time here, I slowly found activities like sitskiing, run by organizations such as SportsNet, working to get community members with disabilities involved in recreation. But the challenge to break into the city and learn about its accessible programs remained with me as I moved forward founding a business and building a family. It seeded a craving for local change within me — a future of disability-related impact work.
In 2011, numerous friends and family made donations to a Charitable Trust promised to the advancement of mobility and inclusion, in honor of my birthday. During 2018, I was ready to transition from my full-time business responsibilities to this vision of impact work planted long before. I spent time with my brother brainstorming a transformation of the Charitable Trust into a nonprofit that would focus on equipment and experiences for youth with physical disabilities.
The brand would become an ode to our recreational and artistic roots, and the never ending work that goes into changing a sliver of the world. It’s inspired by musical influences like Bob Dylan’s “Neverending Tour,” the line “the road goes on forever” from The Allman Brothers Band’s hit song Midnight Rider, and the development of blues, mixed with the opportunity of wheels on an open road. Through this, we landed on the highway; the Endless Highway to independence, inclusion, and dreaming big. We have no final destination here, just progress along the way.
The Road Ahead
Because of my accident, I was exposed to a new world that I knew nothing about before, and the barriers that came with it. All of my experiences since — employment, relocating, networking, business leadership, fatherhood — have been additionally shaped by using a wheelchair and incurring the mental and physical load of seeking accessibility at all spaces, finding alternative ways to accomplish tasks, and creating opportunities for myself where they didn’t exist. From this, I have a hope for all youth with disabilities to feel supported and a part of the dynamic of our community, from the start.
Participation in sports, recreation, and arts programs that are inclusive of people of all abilities is critical to feeling embraced by your community. In 1996, I responded to a news interview question about what I thought I’d be accomplishing in my life in 10 years from that moment. Quoted, published, and archived on the internet forever is the response: “My final dream is to start a foundation with financial capabilities to help purchase athletic equipment for children and young adults with disabilities.” Cue Endless Highway.
Sharing this journey with you, in new ways like this blog, is just one of the honors of leading Endless Highway. During the ongoing pandemic, we’re especially frustrated that we can’t impact children and families through direct program delivery and social events as usual. So we’re using this time to build stronger infrastructure, increase partnerships, and ready new opportunities for roll out as soon as the environment is safe.
We’ve started the work in our own communities in Rochester, and have already begun expanding to Buffalo, Syracuse, and Albany, NY. The vision of Endless Highway includes impact across all of Upstate New York, and hopefully one day, across the country. So thank you for joining us on this ride. If you’re a parent, guardian, business owner, or stranger also passionate about creating opportunities for youth with physical disabilities, get in touch with me today.