I still remember landing in Philadelphia, wrangling my small luggage with three days of clothes onto my lap, pushing through the busy terminal and catching the downtown train to my hotel. By myself. The trip was for a checkup with the surgeon who performed my Mitrofanoff bladder surgery and to visit a few friends in the area. I didn’t have my mom tag along. The sense of independence was beyond liberating. As corny as it sounds, I felt like a grown-up. I had traveled overseas regularly for work with co-workers, but navigating the streets of a large city on my own was intensely gratifying.

For many wheelchair users, deciding whether to travel alone or with a caregiver or companions who can help you can be tricky. As appealing as solo travel is, not everyone is physically able. On the flip side, sometimes you can travel alone, but doing so comes with unexpected costs. How can you know if you should go it alone? And when is it better to travel with help? That answer is different for everyone.

As a C6-7 quad, not all travel is doable on my own. I decided to make that short trip by myself since I was familiar with Philly, had friends and family nearby for what-if scenarios, and, most importantly, because my time away was brief enough that I could wait to do my bowel program and showering until I returned home.

When it comes to deciding whether to travel alone or with a caregiver and how to do so, there are no definitive solutions, only what works best for you. I spoke with three wheelchair users with different needs to see what their approaches are and what they’ve learned on the road.

A Simple Solution: Advertise

As the founder of a nonprofit and a longtime rugby player, Shawn Fluke is no stranger to travel. Fluke is a C5-6 quad and needs assistance when he hits the road for rugby tournaments. His solution for finding someone to help with bowel care and showering is to advertise at his destination. “Recently, I’ve been using care.com, but for over a decade I used Craigslist,” he says. “I place an ad two or three weeks before my trip. And I usually get a few responses.”

He vets potential hires via phone interviews. “I would talk to them and do a phone interview and see if it is going to work,” he says. “I’ve been fortunate that it’s worked out for the most part. Although, I have had a couple of mishaps.” When a caregiver no-showed, Fluke had to scurry to hire another person the morning that the care was needed.

Since Fluke only has help for bowel care and showering, he still needs to navigate transferring in and out of mile-high hotel beds. “About 90% of hotel beds I can’t transfer into, but I’ve always been able to get the maintenance person — even a front desk worker — to remove the box spring,” he says.

Despite often having family at rugby or conferences, they don’t usually take on any caregiving responsibilities. For an upcoming rugby tournament in Switzerland, Fluke asked his brother to travel with him. So, is his brother coming as a caregiver or as a brother? “He is kind of coming as a mix, and that’s why I am splitting his ticket with him,” he says.

One of the side benefits of Fluke’s approach is that he has cultivated a network of caregivers he’s worked with in cities all around the country.

Let a Vacation Be a Vacation with a Caregiver

For C4-5 quad Corey “Pheez” Lee, traveling without assistance is out of the question. Further complicating the issue is that Lee is now a husband and father to two young boys. His wife is capable of handling his care, but having her do so comes with a cost. “I want freedom to travel alone with my spouse,” he says. “But then, because she has to take on all of that stuff, it’s not really a vacation.”

In 2014, he and his wife drove to Baltimore, Maryland, so he could have intensive therapy at the Kennedy Krieger Institute. “We traveled with a caregiver on this trip, and it was super helpful. About 40 minutes from the house, I had a bowel movement,” he says. “So, it’s like, what do we do now?” They decided to stop at a hospital. With the help of the caregiver, he got cleaned up. “Who would have watched our 3-year-old if I didn’t have the caregiver with me?” he says.

The caregiver was also helpful in maintaining a daily routine and alleviating that responsibility from his wife. Lee said the Department of Veterans Affairs paid for 4 hours of care per day, but he had to pay for the other 20 hours, plus meals. Lee also paid for a separate room for the caregiver.

Lee is learning to manage the delicate balance of needing assistance but not letting it impinge on his travel. On his family’s first trip last year, Lee traveled with his nephews, sister-in-law and mother-in-law to Hershey, Pennsylvania. “Thank God for them,” he says. “When we arrived at the hotel, the Hoyer we rented didn’t fit under the bed. They ran up to Target to get bed risers and set up the air mattress I use.”

Jumping In at the Deep End

Nicole Roy didn’t have the luxury of slowly learning how to manage her care while traveling. After coming home from spinal tumor surgery as a T9 para in August 2022, she was back to work as a strategic account executive by the beginning of September. She had been sent home without rehab, sitting in a folding hospital chair. With four days’ notice, a new boss requested that she attend a work conference in Minnesota. “Because I had switched positions, nobody knew my situation. So, I told myself, ‘We’re doing this.’ I was so naive,” Roy says.

After watching hours of Youtube videos and making three calls to the airline — and receiving three different answers — she drove herself to the airport for her first flight. She used a luggage strap to fasten her luggage to the frame of her chair like she learned in a video. “Oh, my gosh! I wish I had a video. The cracks in the sidewalk, every speed bump and rumble strip … the luggage kept falling. I didn’t account for any of that,” she says.

Her flight to Minneapolis went smoothly, and she eventually found a ride to the conference, despite two Ubers refusing to give her a ride. From the outside, it looked like she had figured everything out. A colleague even mentioned, “You acted like you had it together.” “The truth was,” says Roy, “I was a wreck on that trip. I was nervous. I was nauseous. Looking back, I never should have traveled. My body was not ready.”

Rather than being scared off from traveling, she’s implementing all she’s learned into planning her next trip. “Someone is driving me to the airport and will help me get my luggage inside. I’m flying by myself but meeting two [nondisabled] friends,” she says. “i’ll have my own room, but just having an extra helping hand available relieves some of the stress of traveling.”