Why I can’t travel

Travel is the one thing that really bums me out on a regular basis. Because it’s one of the things I want to do more than anything in the world – and something I can’t do because I’m disabled. I have never taken a trip or a vacation, unless you count a weekend stay at a hotel an hour away at the beach. Which, even if you do, was 10 years ago. Don’t get me wrong, I loved every bit of our staycation, but we could only just barely manage and we haven’t been able to do anything like it since.

The problem is that it’s not just one thing preventing me from traveling. It’s a whole host of barriers that stand in my way. From hotels to transportation to the actual destinations themselves. 

First of all, caregivers are expensive and difficult to find

Currently, my mom acts as my full time caregiver. I was (after years and years on a waiting list) accepted into a state program that allows me to hire a caregiver through an agency. Rather than go with their employees, I hired my mom as we live together and also because I’m only approved for 30 hours a week. Which might sound like a lot, but if I didn’t live with my mom, I could never survive on that alone. I need help with basically everything, which is a whole other topic in itself, but it’s a much bigger gig than 30 hours a week.

When I was younger, we had aides come to help my brother and I but they were never reliable. We went through several, and they were either late, inexperienced, borderline abusive, or quit after a few weeks. It’s not as simple as just hiring someone. It’s a hard job with a lot of turnover, especially for people requiring nearly 24/7 care.

The reason I’m explaining all of this is to show you just how difficult it is to just get assistance at home even with insurance and a significant disability. I genuinely don’t know how I’d find a caregiver to travel with me on vacation because I could never afford to pay them out of pocket.

Airplanes are not accessible

Airplanes are terrible for wheelchair users. There’s no way around it. First of all, hundreds of wheelchairs are damaged or destroyed every single year. Unlike lost or damaged luggage, the loss of a wheelchair can be an absolute catastrophe for a disabled person. If I were to lose mine on a trip, I’d be stranded in a new place with no way to move. I can’t do anything without a wheelchair. I can’t sit anywhere without proper support or function even on a basic level. If you follow me anywhere else or saw my older posts, you might have seen how I had to fight for a year to get my current chair – so risking it on an airplane is basically out of the question.

It’s not just that, though. I’m physically unable to transfer out of my wheelchair into an airplane seat. So, even if I was willing to risk it…. I literally can’t get on the plane. Because y’know, we can go to space but not develop a way to let wheelchair users stay in their chairs during a flight. Shane and his fiance Hannah posted a video discussing their recent plane struggle on their channel. It does a great job at showing how overwhelmingly difficult air travel is when you’re disabled. If anything I’ve said or you see in his video bothers you – and it should – please check out allwheelsup.org, who are working to make airplanes more accessible.

Public transportation is also unreliable

Taxis, Uber, Lyft, trains, and car rentals are also unreliable. Especially if you’re not in a big city. Unfortunately, to get an accessible car, you have to be prepared to pay a lot of money. Much more than for a regular car. And depending on where you are, you’re not even guaranteed to find one that will work for your needs.

Where I live, I’m very quickly screwed if my van breaks down or the wheelchair lift in it stops working. I’ve been stranded many times and even emergency responders were at a total loss when trying to figure out how to get me home. When considering travel, just figuring out how to get around the city is a huge concern. Being able to hop in any car is something most able bodied people take for granted.

Traveling with so much equipment is hard work

To go anywhere that involves at least one overnight stay, I have to bring my wheelchair (obviously, but it’s big and you have to account for the space it takes up), wheelchair charger, my hoyer lift, bathroom supplies, and then my regular luggage. Since my brother and I basically do everything and go everywhere together (we share a caregiver), multiply that all by two.

We can’t really fit our hoyer lift into our van with the wheelchairs. Plus, even if we could, small hotel rooms become much smaller once you add in two large chairs and a hoyer lift. It’s not impossible, but it’s hard. Vacations involve work for everyone, but with my family, there’s just so much EXTRA work and stress. And it all falls onto my mom, because I’m not able to help her out aside from planning.

No matter where you go, you will run into inaccessibility

Cobblestone streets. Random steps into buildings. Too narrow doorways. Bathrooms too small. Broken elevators. Bar height tables. Sketchy ramps. No curb cuts. I could go on and on and on. But the ADA is not enforced, and it does not matter which city you go to – you will run into problems at some point. They might be minor, or they might be enough to leave you stranded at your hotel. Some might even be dangerous. 

But the sad truth is that while this might sound nitpicky and complainy, it’s a constant nagging stressor for disabled people. I have never once gone to a new place in town and not felt a silent panic wondering how difficult it was going to be for me to manage. Travel is inaccessible because much of the world is.

Then there’s all the little things that will inevitably crop up while away

Things like accessible reservations falling through. Something going wrong with my wheelchair and not being able to get it repaired while I’m away. You can’t plan for everything that can go wrong, obviously. I’m not saying that I need everything to always be perfect. But there’s a lot of potential for things to go sideways. Combining that with everything else I’ve already mentioned, it’s all just very overwhelming. And scary. And prohibitively expensive. 

What it really comes down to is this – access for disabled people is rarely considered a priority

Rather than something that is necessary to give equality and safety for disabled people it’s treated more like a special perk. A bonus that may or may not be available if you call the right person on the right day. The travel industry has hardly gone out of it’s way to be inclusive for the disabled community. The second you put in accessibility filters on any search – for a hotel, airbnb, car rental, anything – and your results will drop from hundreds to less than 30. More likely to be less than 10. And don’t be surprised if some of those don’t actually end up being accessible anyway.

I roll my eyes every time I see people talk about travel like it’s so easy and just something you have to prioritize. It’s not as simple as just budgeting right or taking the time for yourself while you’re young. These are just a few of the reasons why so far, I haven’t been able to travel. They won’t apply for every disabled person, and some people will have even more barriers than I do. But in 2019 when we have so much technology, so many options in place, and the ability to do things that astound us every day – should it really be that way? Should disabled people be so restricted? Are we just supposed to accept that so much of the world is simply off limits to us?

Because I don’t accept that, and I hope that you won’t either. In order for anything to change, everyone needs to care. Everyone needs to make noise and demand better access. There’s an entire portion of society that’s waiting for their chance to see the world, myself included. And guys, I’m pretty tired of waiting.

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