Crowd Sourced Post: Traveling When you have a Disability

Initially this post was meant to be one where we shared helpful information, websites and other tips for traveling when you are disabled and/or have a child with a disability. But I also wanted to ask question and gather perspectives around the current difficulties and barriers to traveling when you have a disability. What unfolded were a few tips, with many more thoughts and frustrations shared around traveling with a disability. To make it even more clear, the original intent of this post was geared toward other people and families in the disability community to share helpful information–and that is still a small component–but now it’s geared more toward non-disabled people to raise awareness AND to encourage them to push for and make changes where possible. Or not possible. Really none of it is “possible,” in the eyes of most people, and we need to do it anyway.

Let’s start out with the tips!

Tips For Travel
Q: During the planning phase, what are the websites, apps, travel agencies, people/organizations on social media or other resources you use that help you plan your vacation?

Wheelmap.org
Trip Advisor forums and FB groups
accessibleholidayescapes.co.uk
Airline Disability Help Desk

–Hotel websites (calling to ask about accessible rooms, floor space for his sleeper and wheelchair, etc.) When we go to Disney we get the app to help navigate lines and food acquisition. Calling Parks Services to ask about the quality of trails and most crowded times.

–We tend to book hotels or houses that seem to be accessible however we’ve run into the problem of many hotels/resorts making those rooms significantly more expensive and therefore have opted to not book one of them and carry her/her wheelchair up flights of stairs instead because the extra cost would make traveling cost prohibitive for us and we feel like it’s better for her to see the world than not.

–We use AirBnB and read a LOT of reviews. Disability travel sites have never been helpful and travel agencies make it too expensive. For us it’s a lot of calling or emailing every place we’re interested in and asking detailed questions while knowing they may not know the answer.

–Word of mouth and careful research of where we are going.

Traveling
Q: During the actual traveling phase (airport navigation, flying on the plane, road trip prep) what tips can you share thave have helped your experience to be smoother, safer and more enjoyable when traveling?

Amy, UK
Make use of all the assistance available at the airport and be prepared to be assertive in what you need but also in what you can manage for yourself (way too many people try to ‘helpfully’ push me…)

Erin, Texas
–Pack a 24-48 hour bag for her with feeding formula, diapering supplies and two changes of clothes, extra syringes and feeding tube, etc. Has saved us when we’ve been delayed or deplaned and haven’t had access to her luggage.
–Keep the feeding pump attached and running. I once took it off and they flipped out and didn’t know what to do. Ha! But if it’s attached to her and running it’s part of her body to them and they are much calmer for some reason?
–We use a lunchbox with ice packs for her refrigerated meds and carry it onto the plane and so far (probably 20 flights) no one has told us we can’t do that.
–Call TSA Cares line ahead of time and be prepared to take a lot of extra time going through security. Sometimes we get our own devoted agent and we move through quickly, even skipping the line. And sometimes they scramble to find the right person and it takes a hot minute. Even the same airports are different every time. I try to be patient and expect this now; they’re trying. Also I ask not to be separated from her. They’ve tried that one (she’s only three now, so what the hell?) and as long as I say no they respect me. Idk why anyone would think that’s ok, but they sure have at times.
–Keep meds in their original containers. We have one liquid anticonvulsant med that sets off the explosives alarm sometimes when it gets swiped and tested. Lol! I swear it’s just Keppra! They’ve always let us through with it so far but keep doctor and pharmacy phone numbers handy just on case!
–We also let insurance and/or Medicaid know beforehand that we’ll be traveling in case of emergencies and see where the closest covered hospital is. We’ve had emergencies.

Katherine, California
You’re allowed to take up to 2 manual chairs on the plane with you (by checking them at the gate). Do not let the airlines insist you have to check your chair(s) or collect them at baggage claim! And if you have a folding wheelchair, most airlines have a cabinet that will fit one folding wheelchair on a first-come-first-served basis. Cabin crews will often put their luggage there, but they have to accommodate your chair if it will fit. It’s always safer to keep as close an eye as possible on your wheelchair while traveling.

Isabela, Mexico City + New York
Buy an over the counter folding power chair to travel with. I recommend the airhawk since the batteries and joystick are easy to remove and take with you on board before the flight. That way the big expensive chair doesn’t get damaged.

Michelle, Kentucky
For my trip to Europe I got one of those Foley catheters- they have a bag? That was AMAZING. No airplane bathrooms.

Stephanie, Canada
Doctors note for food allergies / intolerances explaining its necessary YOU bring and prepare your own food and cannot eat at the provided facilities. Also have (email or call ahead of time for) a note from a manager or coordinator agreed to honour said needs/requirements

Destination Advice
Once you’ve reached your destination: what are the websites, apps, travel agencies, people/organizations on social media or other resources you use that help you explore your destination? OR what are some of the tips you have for enjoying your destination once you’ve gotten there?

Tara,
We really haven’t found any resources specifically helpful for traveling with children disabilities; it’s almost as though the world doesn’t even consider it would something you’d do.

Charlotte, Wisconsin
If you drive bring a ramp. We can still carry our 8yr old in an carrier so we always bring 2 wheelchairs (one that is better on rough terrain) and the carrier and her gait trainer so we can access anything we do so she can access it easier. I know this will get harder as she gets older. We spend a lot of time on research before going so we can just enjoy (and have options to pivot if something is inaccessible) when we’re there.

The Difficulties of Traveling with a Disability
Q: What are the biggest hurdles you face when traveling as a person with a disability, or as the parent of a child with a disability? In other words, what are the things that either keep you from traveling as much as you’d like or what are the things you have to extensively research beforehand?

Amy, UK
WHEELCHAIR ACCESS!!! Trying to find out whether there are steps to places, what transport options are accessible when I get there, whether I can visit the museums/monuments that are important to me. Puts me off travelling overseas a fair bit and I’m pretty privileged as I can manage a couple of steps if necessary as I can use crutches and my chairs lightweight.

Erin, Texas
Accessibility for wheelchair; other equipment we have to bring (feeding pump and feeding supplies, meds that are special order at the pharmacy); being further from doctors is sometimes scary

Kate, Utah
Airplanes are not accessible.

Anon
In general travel, changing places facilities (basically, disabled toilets with a hoist and changing table). Mostly these facilities are lacking, so if there isn’t one nearby and we have to go, we do nappy changes in the back of the car which is… awful. Lack of dignified and safe toilets is the number one reason we don’t go anywhere.

Charlotte, Wisconsin–Mother of a deafblind wheelchair user
You have to schedule interpreters 2-4 weeks in advance, it’s hard to do research onto even know if it’s accessible bcpeople don’t know what that means, we’ve rarely flown bc we need an accessible van at our destination and that’s very expensive, we sometimes bring our own ramp even within driving distance bc AirBnb’s are inaccessible & if they’re accessible they’re very expensive. Distance and lighting is important for seeing cool things at museums and that is hard to find accurate information on.

Macca, UK
Basically there is no comprehensive place to look, just have to work it out ourselves from lots  of different places. Usually have to email accommodation owners as it’s rarely stated if somethings accessible or not.

Emma, California
We don’t feel like we can fly with their chair because airlines aren’t careful with it. Driving places is hard because we have a mini van that is converted so their chair goes where the middle seat was, and there isn’t enough room for luggage or toddler supplies/gear.

Q: What do you wish non-disabled people knew or understood about what it’s like to travel with a disability?

Amy, UK
How much more planning it needs, but also how much more bravery it needs. I’m a uni student and pre-pandemic my friends would often book short last minute trips abroad and couldn’t understand how frustrated I got that I couldn’t join them because unlike them I can’t just arrive in a city and wander round looking for a hostel with free rooms because the chances of me being able to find a room I can use are so low. Also the faff of having to tell airlines in advance of travelling with a wheelchair rather than just rocking up to the airport.

Tara
I wish people would realize that we are trying our best to not inconvenience them but that we want our whole family to be able to enjoy our vacation too. The annoyance and comments we receive from people when we take longer to get in and out of places, we request a specific seat, or my daughter is particularly loud in a restaurant is as though we are ruining their vacation…. they don’t seem to fathom that we too are on vacation/traveling and are just doing our best to enjoy ours as well.

Kat
Stairs are the devil

Charlotte, Wisconsin
If everything was accessible it would be easier & more fun for non-disabled people too. That almost nothing is accessible and that anything accessible is more expensive. I think they need to unlearn some ableism before they can even care or understand the amount of work that goes into planning.

Macca, UK
That you can’t be spontaneous, every logistic has to be thought through and researched and planned. And that the default information is written for non disabled people. Disabled people are never considered, you have to hunt out and ask for the accessibility information.

Madison, Illinois
Its not as easy as hopping on a plane and sleeping in a hotel bed. Not everyone can do those things safely. It’s AMAZING what we non-disabled persons take for granted. Also: Do. Not. Cut. Off. A. Wheelchair. People in wheelchairs need to SEE the surroundings too. Whether it’s a sporting event, parade, or natural wonder. Standing or walking right in front of a wheelchair is one of the rudest things you can do.

Pam, Oregon
That it is a science. We have never been able to just say, “Kids, we are going on a trip, pack your stuff, let’s go!!” It’s panic, anxiety and full on depression inducing that we can’t just go.

Michelle, Canada
Every moment of every day is carefully planned and executed to ensure all goes smoothly, and almost every time we still encounter insurmountable hurdles. It’s absolutely and totally devastating to know that no matter what you do, or how much you plan, there will always be things that are impossible because of the worlds inaccessibility and ableism, and that you will never be able to completely avoid them.

Erin, Pacific Northwest
It is HARD, it is not relaxing at all as a parent of a child with a disability. We are just trying to make memories as a family but it is so much work, mentally and physically. Constantly thinking “can we do this with a wheelchair?” “Does this restaurant have something she can eat?” “Is there a spot to change her?” Etc

Q: Lastly, what needs to change in the travel industry for people with disabilities to have more equitable access to travel?

Amy, UK
More accessible rooms available to book online (rather than having to phone). Waaaay more access information on websites and lots of photos so that people can assess situations for themselves (e.g. things like cobbles, whether steps are normal or steep and twisty etc.)

Tara
Accessibility needs to be more accessible! It’s not enough to have one bathroom big enough for miles, it’s not enough to have a ramshackle ramp, it’s not enough to have one or two rooms in a 800 room facility that are accessible and they cost triple the price, it’s not enough to say that the table that is big enough to accommodate both a wheelchair and other children is booked solid for two hours and you don’t have any other tables that work for a family with a wheelchair user.

Erin, Texas
This is huge: More accessibility info on websites. I never have any clue unless I research the hell out of a place and even then I’m often wrong.

Kate, Utah
Research accessible places so you know what to expect. Resorts are more accessible. AirBnB’s can claim to be accessible but there is not process to prove it.

Natalie, Indiana
More family bathrooms, adult changing areas.

Anon
We don’t travel on a plane. The lack of safe seating and disabled toileting would make it unfeasible.

Charlotte, Wisconsin
Everything needs to be accessible. If a hearing person doesn’t need to request a tour or guide 2 weeks in advance a Deaf person shouldn’t have to request an interpreter that far in advance. Access shouldn’t equal more money, that’s exploitative at best. Disabled people need to be in every room when making decisions and they need to always be considered. There are so many details that need to change but they would all change if Disabled people were valued, considered and consulted about everything since every aspect of travel (and life) matters should be accessible.

Macca, UK
Include information about accessibility as standard, don’t make us ask for it. Especially big sites like air b and b.

Madison, Illinois
As a wanderer Matthew (brother) also needs a safe, enclosed bed. At home, he has a giant enclosed medical bed (looks like a canopy bed with mesh sides.) It is his most expensive aid. It is enormous and not able to be taken apart for travel. When he was young, we’d use camping tents, whether we were outdoors or in a hotel. Then he got too big and strong. Praise God for the inventor of The Safety Sleeper. The Safety Sleeper is egregiously expensive. Without the Make A Wish Foundation, we would never have been able to afford it and my family would be unable to travel to this day. Access while traveling is so much more than a ramp: the tools themselves often have immense $$$ barriers to access.

Pam, Oregon
–Sleep! Our son has Angelman Syndrome, which means he does not sleep as much as the average person. Which then means he’s awake at all hours of the night. At home we have him in an enclosed bed for his safety. There is no such thing as an enclosed bed at any hotel I’ve ever been to. We either don’t go anywhere or we have to get creative and turn the room upside down to create a safe place for him to “sleep” at night. More accessible hotels in every state that cater to ALL disabilities. And ones that are affordable. Most people that I know that have kids with disabilities spend so much money on their stuff that they can barely afford to travel and when it’s too expensive it deters them from taking a trip.
–We need enclosed bed options, beach wheelchairs, accessible bathrooms with handles to get in and out of a bathtub or for a wheelchair to roll into, quiet rooms for people that get overstimulated and need a break, ramps to enter and exit pools and hot tubs, adapted utensil options at restaurants, one consistent type of floor throughout so as not to confuse those with walking difficulties.

Michelle, Canada
HONESTY!! I can’t tell you how many times I’ve phoned ahead, asked carefully and planned around my access needs only to arrive and realize that the person I was talking to had no idea what they were talking about. Instead of telling me they weren’t sure, or finding someone who did know, they lied to me or were vague enough to lead me to believe they could accommodate my needs. If you can’t accommodate my access needs I’ll be disappointed and encourage you to think about changes you can make to be more accessible in the future, but disappointment in the planning stages is far better than arriving only to realize there’s no way to accommodate me.

Emma, California
Actual access. Like no I can’t lift my partner’s power chair into your cabin because “oops you forgot you don’t have a ramp” when your listing says it’s wheelchair accessible.

Erin, Pacific Northwest
Planes need to be wheelchair accessible! The fact that my daughter can’t stay in her wheelchair on the plane and we have to bring on a car seat for her because she needs the support if not in her wheelchair. Well she is 6, not a baby, so when you put a car seat on a plane seat there is really not much space for her legs and she ends up kicking the seat in front of her the whole time. She also requires diapering and 100% assistance in the bathroom and that’s just not possible on any airplane I’ve ever been on.

*****
Phew! That was a lot of great information (a catheter might work great for a lot of people!) and a lot of sites I had never heard of. Also, I don’t really use message boards of sites, but it sounds like there is a lot of good information to share going on there.

ALSO, how about all the barriers and struggles? Of course I knew about the lack of accessibility on planes, but some of these ideas were new to me–like enclosed sleepers and more changing facilities for bigger children and adults who need assistance. In fact, I was just in an airport last week (first time since Covid) and at one point a group of women who worked as custodians in the air port were blocking off one side of a woman’s bathroom. They kindly explained that a mother was using the bathroom with her autistic son. I thanked them for what they were doing for her, but also thought about how often this mother and son have to navigate these situations and don’t have the support or help from people around them.

Another common thread (and something we personally deal with a lot) is how much you have to DIG for information on accessible features everywhere you go! From renal homes to restaurants, from out door activities to indoor theatres–it is a constant game of “needle in the haystack” to simply get the information you need. It is absolutely unfathomable that airplanes don’t need to be accessible! Because Lamp doesn’t need the support of her chair, she is able to comfortable sit in a regular airplane seat. But a lot of people can’t, which means they can’t fly. At all. And no one seems to care! And of course what about bathrooms? Even if a person can sit in an airline seat, they might still need assistance in the bathroom and again for some people it would literally be impossible.

Additionally, sites like AirBnB, Kid&Coe don’t have a great system for offering accessible vacation homes. Again it’s information you have to dig for and it’s exhausting.

There is SO MUCH that needs to change in the travel industry. I’m curious if anyone reading this works in travel and is either 1) moved to do something within their organization to work toward greater overall accessibility, or 2) knows of changes already in the works? Either way I’d love to hear! And please feel free to leave more tips, things you’d like to see changed in the arena of traveling with a disability!