Twelve years ago, I was blessed with a beautiful baby boy. Two and a half years later, my second amazing son came into this world. They were born after my multiple sclerosis diagnosis, but before MS would require me to use a wheelchair. Fast forward to today, and I’m traveling around the world in my power wheelchair, almost always by myself. I’m also a part-time single mom, and now that my sons are 11 and 9, I made the decision that they’re old — and responsible — enough to travel with me.

I was nervous the first time I brought my boys with me on a trip. My mother traveled with us just in case I needed help with anything from pumping gas to child supervision while I used the bathroom. I picked Atlanta for a road trip in June 2018 because we could reach it in a day’s drive from my home near Orlando, and it’s filled with family-friendly and wheelchair-accessible things to do. I had already spent hours planning our activities, and all I had left was to find a hotel room. Little did I know how challenging this would be.

I’ll admit I was being too greedy while searching for an accessible hotel room that would accommodate all four of us. I hoped to minimize the bed-sharing in particular. Since I can’t move my legs or roll over easily, if I’m sharing a bed, I need at least a queen-sized one so I can sleep and move comfortably. And, have you ever tried to put two adolescent boys in a double bed together with the hope of a good night’s sleep for all? Once I shared a king with my 9 year old and had to duct tape a rolled-up mattress cover between the two of us so he’d stop kicking me!

The Quest For A Room That Works

The odds of snagging an accessible hotel room that can accommodate more than two people are considerably higher in the United States than in other countries. However, those odds are diminished if you need a roll-in shower instead of an accessible tub, since bathrooms with roll-ins often take up more space. This means the bathroom encroaches on the bedroom, which leaves less room for beds.

The Americans with Disabilities Act has rules for how many accessible rooms a hotel must have based on its size, and how many of those rooms must have roll-in showers as opposed to tubs. Additionally, the law requires that accessible rooms be dispersed among various categories (such as standard, deluxe and suite) and that a variety of choices be offered for the size and number of beds. In practice, these requirements are rarely followed. This is why finding an accessible hotel room with a roll-in shower and two queens can be like finding a unicorn. Add a sofa bed to the mix and you just won the lottery.

I sort of won this lottery in Atlanta at a Staybridge Suites by the airport. Our accessible room had two queens and a sofa bed, so my mom and I shared a queen, and my boys each had their own bed. On the downside, the room had a tub instead of a shower, so it was washcloth baths for me for three days. The room was also ridiculously expensive and located far from the city center.

I didn’t quite win the lottery while planning our next road trip in June 2019. I needed accessible hotel rooms, including one with a roll-in shower, for four people in Tallahassee and Fernandina Beach, Florida. I found such rooms after a considerable amount of searching, but ended up paying over $300 for one night at the Residence Inn in Tallahassee and over $500 for the night in Fernandina Beach. I considered myself lucky that I was able to get these rooms at all, because finding accessible rooms for more than two people in other countries is an absolute nightmare.

In June 2020, I’m taking my boys on an Alaska cruise without any help. We took two cruises and two plane trips in 2019, just the three of us, so I know we’re all ready. The cruise planning was the easy part. The hard part was finding an accessible hotel room in Vancouver for the three of us.

Canada doesn’t have a federal accessibility law like the ADA. Each province has some accessibility provisions, but the rules are not standardized or enforced equally across the country. This means you generally can’t find and book an accessible hotel room online. Instead, you have to call every single hotel you’re interested in. I called one hotel in Vancouver after another, asking the same three questions: Do you have an accessible room with two beds? What size are the beds? Does the room have a roll-in shower?

I called 10 hotels before I found the Fairmont Vancouver, which has the unicorn combination of two queen beds and a roll-in shower. It is also close to the cruise port and centrally located. However, I’m paying $400 a night for that pretty little horse.

Europe is a different animal altogether. Many countries have their stuff together when it comes to accessibility, but because there are few accessibility laws or national standards, you’re never really sure what you’re going to get when you open that hotel room door. Also, European hoteliers are even less likely than their American counterparts to believe wheelchair users travel with their families. Just try finding an accessible room with more than one bed in London (which I’m still trying to do as I type this).

European hotel rooms — especially those in large cities — tend to be smaller than their American equivalents, and European hotels don’t do sofa beds or roll-aways. However, they do have twin beds in their rooms, which sometimes provides options for families of three. But if you’re looking for two queens in a European accessible hotel room, especially one that also has a roll-in shower, you’re going to need help from the CIA, the FBI, the Navy SEALs and possibly NASA.

These are just some of the issues I’ve come across, and I only have a family of three, two of whom are strong, nondisabled adolescents. There are plenty of other families with at least one member in a wheelchair with travel challenges much greater than mine.

Duped and Displaced

Jeana Berron of St. Charles, Missouri, has a family of five, including her 18-year-old son, Joe, who uses a wheelchair. She described a trip to Scottsdale, Arizona, over an Easter weekend where her family had to book two separate hotel rooms, one accessible and one standard, to accommodate everyone. “While the JW Marriott couldn’t guarantee the rooms would be next to each other, we were assured that they would be close together,” she said. “When we arrived, the only rooms they had were in separate buildings.” Berron explained that the hotel is a large resort made up of several separate buildings scattered across the property, and it was a five-minute walk between rooms.

“The trip involved my husband and two sons. I stayed with Joe in one room, and my husband and other son stayed in the other room,” said Berron. “This made it very difficult for my husband to help with Joe. It was as if we were on separate vacations.” The accessible room was also very inconveniently at the back of the resort, at the farthest point from the restaurants and lobby. “Because of this, we were unable to take advantage of the resort the way we had planned,” she said.

Another huge source of frustration for families is checking into a hotel and finding out that their room isn’t what they paid for. Jenny Smolinski of Clawson, Michigan, and her husband have two adolescent daughters. Twice in the past six months, she reserved accessible hotel rooms with a king and sofa bed — or so she thought.

“There were no other room configurations with roll in showers, but that setup would have worked fine for us since my kids are still young,” said Smolinski, who has ALS. “Both times, upon check-in, we discovered there was no sofa bed — only a chair.”

In clear violation of the ADA, neither hotel did anything to accommodate her family. They offered to allow the Smolinskis to pay out of pocket for an additional room, since the properties were not full. But an appropriate ADA accommodation would have been to let them have an additional room for free.

“The first time my husband had to sleep on the floor, and my daughters and I slept together in the king bed,” said Smolinksi. “Most recently, my daughters slept on the floor.”

Getting It Right

There are some hotel chains and companies that get it right, and it should come as no surprise that theme parks are leading the way. For example, Walt Disney World has several resort hotels with accessible rooms that can accommodate more than four people. A quick search using my Disney travel agent reservation portal showed an accessible room at the Caribbean Beach Resort with two queen beds, a child-size pull-down bed, and a roll-in shower. The Fort Wilderness resort has accessible cabins that can accommodate six people with a double sofa, a queen and two bunkbeds.

Another resort chain that gets it right is Great Wolf Lodge. I have visited one in North Carolina and one in Georgia, and both experiences were amazing. In both cases, I was traveling with my mother and my two sons. In North Carolina, we had an accessible junior suite with a queen, a double sofa and two bunkbeds. In Georgia, we had an accessible junior suite with a queen, two bunkbeds and an additional twin.

I’ve also had luck with some non-resort hotel chains. The Residence Inn brand is a subsidiary of Marriott, and it caters to families and long-term stays. Often the suites have separate living and eating areas, along with small kitchens. In many locations, the chain offers rooms with two queens and a double sofa bed, often in separate bedrooms. Its larger rooms also have two bathrooms — one accessible and one standard.

While it’s good to know that there are some accommodations out there for larger families with wheelchair users (at least, in the U.S.), the news isn’t all sunshine and roses. Most of these rooms tend to be much more expensive than standard rooms, even though they lodge fewer people. Some would say that’s fair, as we need more rooms in order for our whole families to be accommodated. But the ADA says that we are entitled to pay exactly the same price for an accessible accommodation as a standard room in the exact same category. Unfortunately, it’s up to us to make sure hotels are abiding by the law.

A Way Forward

I’m not one to complain about something without having solutions in mind. So, what suggestions can we offer hotel chains to better cater to families with wheelchair users? For starters, I find it curious that American hotel rooms don’t utilize twin beds arranged to form a king bed.  This configuration is common in Europe, and it’s very easy to separate the larger bed into two smaller ones. The American answer seems to be the sofa bed, which, conversely, is not a “thing” in Europe.

While sofa beds offer additional sleeping space, they’re not common in accessible rooms outside of those found in long-term suite hotels like Residence Inns or Staybridge Suites. They’re also uncomfortable and not fun for two people to share since they’re usually the size of a double mattress. Because hotels aren’t required to offer rollaway beds, many don’t. I would be very uncomfortable booking a room for my family without guaranteed sleeping space. Offering rooms with an additional twin bed might help.

There also seems to be a lack of accessible hotel rooms with two queens and a roll-in shower. They do exist, but usually accessible rooms with two beds either have queens and a tub, or doubles and a roll-in. I’m sure this is partly because of construction and size limits, especially in buildings that were retroactively modified to comply with the ADA. But the forced choice between sleeping comfortably or bathing safely is very unfortunate.

While some wheelchair-accessible hotel rooms connect to standard rooms, there should be more that do so. It’s definitely pricier to book two rooms instead of shoehorning your whole family into one, and if you reserve an extra as a last resort, you want to at least be in a connected space with your family members.

Before we can even start battling hotel chains to make their accessible accommodations more family-friendly, we have to fight the societal notion that wheelchair users don’t have families. It’s incredibly disheartening to be separated from your family members during a vacation simply because you couldn’t find a place that let you sleep close to each other. It’s heartbreaking to get the message that you’re not welcome at a destination because there’s no place for you and your two children to sleep comfortably.

To all hotel owners, managers, franchisers and franchisees, allow me to introduce myself. I am a wheelchair user, I have a family and we travel together. Our money looks and spends the same as that of so-called “standard” families. We enjoy vacations and leisure time spent together, just like anyone else. Please work harder to help make this happen — for us and for millions of families with wheelchair users around the world.