By Karen Brain

The first half of 2024 was quite an adventure! From health issues to emergency home and car repairs to accessibility issues during vacations, like a snowball effect, each challenge impacted the next. My way to withstand is to focus on the positives.

We finally went on the Alaska cruise we’ve been planning since before the pandemic. Mom has wanted to go on this trip for decades, but life always got in the way. Initially, we planned to go with friends in May 2020. That didn’t happen. We agreed to reconvene after the pandemic when it was “safe to travel again.”

Last December, we planned the same Alaska cruise again in May. We booked the aft accessible room with a balcony, and Mom would share a “standard” (non-accessible) room with a friend. By February, all reservations were made and deposits paid.
About this time, Mom said she was taking a cruise around South America for the month of March. But it was cut short when she fell and broke her leg in Ecuador. One of my many fears is her traveling alone, but there’s no stopping her.

The first hurdle was getting Mom home immediately with a non-weight-bearing leg. She had ten days from the accident to have surgery for her fracture to heal correctly. She had to rely on help from many strangers to get home.

Imagine being alone in a foreign country, age 77, and can only speak English, suddenly without the use of one leg. How do you get to the bathroom? How do you shower? Or change clothes? How comfortable are you asking strangers to help you with these personal tasks? How does a language barrier complicate it further?

Outside the USA, she discovered structures may not be accessible, but people were very helpful. Wherever she went, strangers offered help. Once she landed in the USA, however, it was a different experience. While we have the Americans with Disabilities Act (ADA), we still lack accessibility (including enforcement of ADA requirements), and even worse, in this instance, it was surprisingly difficult to find anyone willing to help Mom. Do we have ADA requirements because we’re so progressive or because we’re so regressive?

I received a call one morning from a Los Angeles International Airport (LAX) staff member. He told me I must go online and buy Mom a flight home in order for anyone there to help her physically. This seemed ridiculous. Her last flight out of South America landed at LAX. She needed help doing everything (getting food, water, going to the bathroom, etc.), and this guy told me, per policy, nobody could help her until I purchased her next ticket. Now, he had poked the mama bear (me). The ticket I wanted to buy would be mine to fly there to kick someone’s ass for holding Mom hostage.

Whatever team created their policy did not include input from anyone disabled, nor was the disabled community even considered before implementing it. Unfortunately, I see this problem ALL THE TIME. Excluding the needs and input from end users doesn’t only impact people with disabilities; such oversights negatively impact several other communities. If those who design products and services, and create policies don’t include input from all end users during the design, failed outcomes and other negative consequences are likely, and revisions are inevitable, leading to unnecessary additional costs. The excuse “we didn’t think of that” is getting old.

Mom got home safely, thanks to our brainstorming and physical help from my friends. Back home, she moved in with us and had surgery a couple of days later. The surgery was a success! But would she be healed in time to go on the cruise? And if so, would she now require a different, wheelchair-accessible room? Only time would tell.

Meanwhile, suddenly, my husband was hospitalized with triple hernias in need of immediate surgical repair. His surgery was a success, too! But would he be able to go on the cruise? Again, only time would tell. It was a nail-biting wait, as the final decision from both doctors was ONE WEEK before our vacation. If one of us could not go, none of us three could go, as we depended on each other for daily care.

For the first time in my life, my family depended on me to physically care for them. I’ve always been the care recipient, and now I became the caregiver. But, of course, I was still disabled too. We couldn’t afford to hire help, and knowing my limitations, I feared failing them. I also feared injuring my body by overdoing it.

It was a challenging time for us. Just when we would scream ARE YOU KIDDING ME to the universe, we would find another emergency or barrier. I found myself in the life I said I never wanted. Yet, there was no question: I would give it 100%. We’re family; that’s just what you do for your chosen family. I wouldn’t have it any other way.

The saying is true: when you find yourself in crisis, you’ll see who your true friends are. Amazon and local store delivery services often saved us, too. Despite so many challenges all at once, I realized how lucky I was to have time with my two favorite people, to work from home, receive home deliveries, and have enough physical ability to reciprocate care to my loved ones as they’ve always done for me. Focusing on those positives helped me get through the hard times.

Eventually, the decision date arrived. Both patients did well and were allowed to travel! I was still very nervous for us. Mom was still using a walker. My husband could not lift heavy items (like luggage or my wheelchair). But we were determined to make it work!

We took a minivan taxi to our hotel when we landed in Seattle. While rideshares like Uber or Lyft are ideal, often they’ve been more challenging than helpful for me. I need my ride to be a sedan, not an SUV. I also need them not to avoid me once they see my wheelchair (yes, that happens!).

Our hotel was a well-known chain. When I made the reservation, I called their Seattle location’s front desk and specifically requested a wheelchair-accessible room with a roll-in shower. Once at the front desk, staff told us they had no record of my request. They had our reservation, but it was “just a normal reservation.” I replied, “Clearly, it’s not. My ‘normal’ is wheelchair accessible with a roll-in shower like I requested when I made the reservation months ago.” Unfortunately, this error happens often. We ended up with one accessible room for the three of us, with a tub shower and two standard-sized beds. We discovered the room was not truly wheelchair accessible for multiple reasons, yet it was labeled as such. By whom? Not a wheelchair user.

When I ask if an establishment is wheelchair accessible, I don’t want to hear, “Yes, we only have a couple of steps at the entrance,” or “Yes, but we don’t have an accessible bathroom.” If I ask for an apple, I don’t want an orange or, even worse, an egg. If they don’t know what an apple is or what I mean when I request “accessible,” they should ask questions. Please don’t pretend to know, or hope to guess right, or assume to know. There’s a saying used in the disabled community: Nothing About Us Without Us. Please ask us questions, or better yet, include our thoughts and ideas in your plans and designs if they’re meant for humans. Because it turns out, we’re human, too.

When we arrived at the cruise ship, it was massive, with over 17 floors! Yet the hallways and bedrooms were tiny! My manual wheelchair barely fit the hallways and would not fit through most bedroom doors. Mom had to close her walker in half and hop sideways through her bedroom door. And how do adult humans fit in those bathrooms?

Then we saw our room. The door opened and closed automatically and stayed open long enough for us to pass through it. The doorbell did not make a sound; instead, a light flashed in the room. (It seemed great for people who are deaf or have hearing loss, but not so great for people who are blind or have vision loss.) The room was huge! There was tons of storage space, an enormous bed, and a spacious balcony.

As the bathroom door opened, I saw the best bathroom I’d ever seen! There were grab bars on every wall. I could reach every shelf, roll up to the sink without hitting my knees on cabinets, and reach the faucet without hopping onto the countertop. The toilet was not too low or too high; it was just right for this Goldilocks. There was a grab bar on the wall behind the toilet and a folding grab bar next to it. The bathroom door had a grab bar, too, and of course, the shower had grab bars.

The roll-in, square-shaped shower was in the corner. It had a wall-mounted folding seat, and I could reach its faucet and shelves on the other wall. Its curtain was on the ceiling track, forming the other two “walls,” My favorite thing was the linear shower drains on the floor underneath the curtain. There were also two round drains in the bathroom, one in the center of the shower and the other closer to the toilet and sink. The linear drains prevented the bathroom (and bedroom) from flooding! It seemed to me that the designers were familiar with disabled users’ needs and included our input in its design. Brilliant!

This room was one of my favorite things about this vacation. Sure, we saw beautiful scenery, wildlife, sea life, and glaciers…but did you read about the shower’s linear drains? NO FLOODING. So simple, and yet, so efficient.

Many things about that vacation were not accessible (e.g., cities visited, excursions) despite traveling within the USA with ADA law. But our cruise room was truly accessible. Unfortunately, for people like me, a room like that can be rarer than seeing glaciers.

Guess what else was accessible—spending quality time with my friends and family. That’s my most favorite thing, above all else. Time spent with them is more precious than any scenery or wildlife. They are the beauty and memories I seek. My loved ones nourish my soul.

I hope you can spend quality time with your loved ones this summer or do whatever makes you happy and nourishes your soul. If you can, find time to get away from your daily grind, even if just for one day. You’ll be glad you did. Have a great summer!

This article was originally published in the 52 issue of Las Vegas PRIDE Magazine, and can be read in its original format here.