Have you heard of the disability tax? No, I’m not talking about a tax credit at the state of federal level related to disability. Instead, I’m talking about the financial toll it takes to be disabled in an extremely inaccessible world that’s not built with disabled people in mind. I don’t think I’ve ever talked about this before, and since I’m currently unemployed, finances are on my mind more now than ever! So I thought I’d go over a few of the ways that I have to spend more because of my disability.

I got back from a trip to DC last month and have a trip to New York ahead of me this summer, so travel is on the top of my mind right now. Travel is expensive for everyone, but I have extra expenses that non-disabled people don’t have to worry about. Take hotel rooms, for example. Everyone likes a spacious hotel room, but for me, it’s not a matter of liking, but needing. When I travel, it’s with my parents and my sister, who also uses a wheelchair. As you might imagine, two 300+ pound power wheelchairs take up a lot of space. Just trying to be able to navigate around each other around the room, plus make sure there’s a space to park our chairs overnight while they charge, and space to navigate around the beds… we need a lot of space. We also need somewhere with at least 1.5 bathrooms (a bathroom and a powder room, typically), because we both need help using the bathroom, so there’s no “running down to the lobby” as an option.

All of this means that a standard room doesn’t really work for us, and we need to upgrade to a suite or two connecting rooms. On the surface, this sounds nice, and it is! But not only does it really limit our options, it’s really expensive! And it’s not something we’re choosing to be fancy, it’s just a necessity of life with two big wheelchairs and lots of other medical equipment.

During my last trip to NYC, I finally got to try out wheelchair accessible Ubers. They were amazing – really opened up the city for us, and let us easily and quickly get to neighborhoods that we wouldn’t have been able to make it to otherwise. But they can only fit one wheelchair at a time. So while most families of four would only need to call one Uber to go somewhere, we needed two every single time. And this doesn’t even take into account the fact that the subway is by far the cheapest and most efficient way to get around the city, but less than 25% of the stops are accessible on a good day, when all the elevators are working.

It’s not only about big things like travel, either! The disability tax can take it’s toll in the everyday, too. My clothing and shoes needs are very specific. Having SMA means that I’m super petite – I had spinal fusion surgery in sixth grade, and my torso hasn’t grown longer since then. I typically wear an XXS, and have size 4 feet in women’s shoes. I can’t go into a department store and assume that I’ll be able to find something in my size. Those sizes are not commonly sold – and the brands that do sell them are typically more expensive, especially with shoes.

And just think about all the things I’ve shared as “Accidentally Adaptive” over the years! I love finding products that make life more accessible for me, but they also add up. Things like smart lightbulbs paired with an Alexa so that I can turn my lights on and off, or an automatic dispenser for my micellar water because the bottle is too heavy for me to turn over and use by myself. It’s incredible that these things exist, and I have access to them – but it’s an added cost that’s not there out of luxury or want, but because of need.

And sometimes – even with multiple insurances! – the disability tax applies to medical things, too. I use tape to secure my feeding tube on my stomach, but the tape that the specialty pharmacy supplies really irritates my skin, to the point where I can’t use it. So every month, I pay out of pocket to buy medical tape for sensitive skin so that I don’t have to choose between my feeding tube leaking and irritating my skin, or the tape used to keep the tube from leaking irritating my skin. I’m very lucky to have the insurance that I do, but going through insurance is slow. My sister and I have occasionally paid out of pocket for things like a portable toilet support that we can take with us for travel because by the time insurance would approve it and get it to us, the trip would be long over.

Honestly, I could write about so many more cases where I pay a premium for my disability! This is far from an exhaustive list. All of this is also in the context that disabled people are often unemployed/underemployed, and forced to live below their means to stay eligible for governmental programs that pay for vital aspects of their care. It can all be exhausting, and is something that’s often overlooked.