In April, as I stepped onto a cruise ship with my family, I should have been excited. But often, I don’t have the luxury of feeling that first moment of vacation bliss. Living with multiple sclerosis, I find walking and standing a burden. And accommodations that would enable me to navigate a vacation with ease have been difficult to get because my disability is invisible.

For many of us in this gray area of disability, this is common.

That must change.

Meeting with resistance

I don’t use a wheelchair; I can stand and walk. However, prolonged standing diminishes my strength, leaving me unable to walk afterward.

In 2019, I tried to get an accommodation of bypassing lines at ports during a cruise with my husband but without much success. It was unsettling that receiving an appropriate accommodation could be so challenging. Still, my love of cruises sat in my brain, nudging me every so often. Recently, I began to consider the possibility of trying again.

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In theory, a cruise should be a good option for those with mobility challenges, and I thought that perhaps the cruise line would be more accommodating now because disability awareness has increased in recent years. With more experience being a self-advocate, I also thought I could now communicate my needs more effectively ahead of time.

So, despite the possibility of facing the same challenges, we decided to take our children on their first cruise. I was determined to receive an accommodation in writing before boarding the ship. I wasn’t willing to miss the thrill in my children’s eyes as they swam in Caribbean clear water for the first time.

I obtained a letter from my neurologist (which was required by the cruise line), filled out the Guest Special Needs Form online and then made several phone calls to the cruise line’s Accessibility and Guest Services departments requesting the ability to bypass lines to exit the ship at ports.

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This would help conserve my strength, enabling me to walk once on the ground. I was repeatedly told that I could enter and exit the ship via wheelchair on the first and last days but that no assistance would be provided at ports.

Options, including wheelchair pier assistance and wheelchair-accessible vehicles for transfers, are listed on the Guest Special Needs Form. However, supports for invisible disabilities, including bypassing lines, are not; receiving accommodations not listed is nearly impossible.

I offered to use a wheelchair to exit the ship at ports but was told that wheelchairs are not available on board. People can bring their own wheelchairs; however, I don’t need one frequently enough to justify purchasing one.

I later discovered that wheelchairs can be rented from various companies, including Scootaround and Special Needs at Sea. But as someone who can walk and chooses to do so as much as possible, traveling with a wheelchair solely for lines isn’t feasible, as I would need somewhere to store it once I disembark.

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It was then suggested that I pay an additional fee for an upgraded package with numerous perks, one of which is expedited disembarkation at ports.

But to charge me for an accommodation for my disability is not in compliance with the Americans With Disabilities Act.

What worked for me

After many unsuccessful communication attempts using the general email and phone number provided online for the Special Needs Department of the cruise line, I did some research and emailed a specific employee in a lead position within the Access Department, the department responsible for providing specialized assistance and accommodations for guests with disabilities.

It seemed that staff weren’t trained to handle these requests. Contacting a specific employee was the step that ultimately made a difference for me — I then received the email I’d been waiting for: My accommodation was finally approved.

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Traveling with an invisible disability is never simple, but now I knew that receiving the support I needed was possible and that contacting a specific employee could ease the process. But there was no clear way for the crew to be aware of my accommodation.

On board, I was initially told to stand in line, and I had to relay my story for what felt like the hundredth time. But then, I was introduced to the guest departure officer, the person responsible for ensuring guests can exit the ship with ease.

She genuinely wanted to help and said to call the guest services desk when my family was ready to disembark at ports, and she would guide us around the line. Having her contact information allowed me to receive the support I needed to access my vacation in its entirety.

The cruise line I traveled with is not alone in its need for improvement in accommodation access. For this reason, I chose not to disclose the company’s name in the hope that I may create awareness for change across the board without placing blame.

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(When contacted for comment by The Washington Post, the company acknowledged that it could have handled some things better and said it is committed to improving experiences for travelers.)

Why receiving accommodations can be a challenge

“About 80 percent of people with disabilities have an invisible disability,” said Wayne Connell, founder, president and chief executive of the Invisible Disabilities Association (IDA). “It’s the invisible nature of their disability or illness that often leads to disbelief and misunderstanding about what help they may need or if they need any help at all.”

Tiffany Yu, author of “The Anti-Ableist Manifesto” and founder of Diversability, a community of people with disabilities and their supporters, with the mission of elevating disability pride, understands the challenges I — and many others — face when trying to get accommodations.

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“We presume non-disability unless someone ‘proves’ otherwise, and even then, people often have to disclose personal, medical and traumatic information to receive basic support,” she said.

“Disclosure shouldn’t be a prerequisite for dignity. It’s a problem of assumption over accommodation, and it forces people to overexplain or justify their needs, which can be exhausting and demoralizing,” Yu said.

Tips for people with disabilities

People with disabilities deserve to travel with ease, and there are ways to make it feasible.

“Traveling with an invisible disability requires lots of planning and prep,” Connell said.

Contact the transportation company — whether it be a cruise line, train, bus or limo service — ahead of time and ask for a contact person who can help on the day of travel, Connell recommends. Before air travel, call the airline and airport to provide any details needed to facilitate a smooth check-in and flight, he said.

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From mapping out restroom or quiet lounge locations to ensuring wheelchair availability or establishing care for a service animal, there are many details travelers may need to consider, Connell said.

Yu advised focusing on the barriers you are experiencing and what you need to address them.

“For example, [you could say] ‘I have a disability that impacts my energy levels and stress responses. Here’s what I need to make this experience more accessible,’” she suggested. Yu also said that while you shouldn’t have to prove your disability, a doctor’s note or travel letter may allow for a smoother process.

Through the IDA, the National Disability ID initiative is pursuing legislation that would enable voluntary disclosure of disabilities on state-government-issued driver’s licenses and IDs.

While only offered in Alaska, Colorado and Utah, personalized disability ID cards — sold by the IDA — provide visual recognition of a disability and the possible need for accommodations. Connell said the IDs signal that the disabilities are real even if you can’t see them.

How we can increase accommodation access

For everyone living with an invisible disability, changing the atmosphere around accommodation access is essential.

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The first step is believing disabled people when they advocate for their access needs, Yu said. Accessibility should also be built into our lives so that it’s not something we need to request, explain or justify — this might include sensory-friendly options or the ability to opt out of physically demanding activities, she said.

Education is another vital piece of the solution. “Organizations across industries, including travel and hospitality, should proactively train their staff to understand the spectrum of disability and to respond with empathy and flexibility,” Yu said. “When more people understand that disability isn’t a monolith, we create a culture where accommodations aren’t questioned — they’re expected.”

Finally, policies that support travelers with disabilities need increased visibility, Yu said. “An accessible and anti-ableist approach would include clear information, low-barrier processes for requesting accommodations, and staff trained to handle those requests with care and respect,” she said.