By Nancy Baye
“I may have lost my sight, but I haven’t lost my vision. I have a vivid imagination,” Toby Willis says as he describes his congenital sight loss. “I inherited a genetic mutation, Leber’s disease, which began expressing when I was very young. I tried to hide it because of the stigma, the barriers that people place on people with disabilities. But by the time I was in junior high school it was unmistakable.” He did gene therapy, which restored only a bit of his sight—too much damage was already done to his retinas.
That bit of residual vision helps Toby’s outdoor adventures—and there are a lot of those. He loves travel and any outdoor adventures: hiking, back country treks, technical rock climbing and sailing.
Growing up near water, Toby grew to love swimming and boating. When he moved to Seattle, he made friends with an optometrist, who understood his sight loss. Toby expressed interest in his sailboat, admitting he knew nothing about sailing. He recalls their first day on the water. “When my friend realized my phone had a compass with read aloud function, he said that if I could access a compass I could sail! I fell in love with it—it’s fun and challenging and I’ve had this amazing teacher.” The phone software lets Toby connect to the boat’s instrumentation and get most data read aloud—the position of the boat, depth of the water, direction of travel. He can also operate the autopilot steering. “We’ve sailed in many parts of the world. Navigating the locks of the Panama Canal beside 900-foot-long container ships was quite a pinnacle for me.”
An employee at Expedia Group for seven years, Toby has helped forward accessibility and inclusion for marginalized travelers. “Travel for people with disabilities is improving. I see progress and investment. Awareness has become more mainstream, the topic less taboo. I hope we are shifting from compliance to inclusion.” But, having faced discrimination while traveling with his service dog, he acknowledges that there is still a lot to be done.
When asked about his service dog, Toby lights up. “My beautiful German Shepherd guide dog attracts a lot of attention, which is cool since I love social interaction.” He admits that one of the hardest things about being blind is meeting people. “Think about being in a noisy bar or crowded restaurant; it’s not like we’re able to make eye contact across the room. But people will come talk to me about the dog.” Yet, there are days when even those positive interactions can be exhausting. “I have to remember that the one thousandth person asking to pet her doesn’t know that 999 other people just asked the same question.” Guide dogs are not supposed to interact with strangers for fear of breaking their focus or the bond with their person. Toby feels lucky for a strong bond with his work-oriented dog, who is very focused on him. “But I’ve had people stop me on a city crosswalk asking to pet my dog and I think, ‘Excuse me, can we get out of the street first?’”
One of the Toby’s most amazing moments was when he got his first guide dog. Before that hiking was much harder; he’d stub his toes on roots and rocks. “The guide dog really opened up my world. She’s able to understand my gait and my stride, where I’m going to put my foot next, and she’ll position me where I have a solid step. It’s been so liberating to have a dog for those trails where it’s appropriate.”
But before the outdoor adventures could start, Toby had to accept his disability. “The turning point for me was really accepting my blindness and leaning into that. This is who I am, this is the hand I’ve been dealt. I’m gonna play it to the best of my ability.”
He advises others to be confident, unafraid to ask for help and to embrace technology. “Acceptance is hard, but it’s critical and something we must strive for. Accept and love who you are and be confident in your abilities to contribute to society. People appreciate that confidence and self-love. That’s how I found people willing to help me access the outdoors as I wanted.”
Then he’s back to gushing about outdoor adventure: his love for hiking, the smell of the air, the feel of the trail under his feet. “My inputs might be differently weighted because I have less sight, so I depend on my other senses more to fill in that mental image.”
When people ask Toby why he summits peaks, why he would climb a 14,000-foot mountain, “I tell them I like the view! That always gets a laugh but it’s true, my view is just different than yours.”