In this commentary, Bridgit Kuenning-Pollpeter reflects on the added financial costs of navigating an inaccessible world.

This commentary is part of the Voices of Disability Economic Justice Project, a partnership with TCF’s Disability Economic Justice Collaborative. Voices of Disability Economic Justice showcases disabled writers’ first-person perspectives on the economic issues that matter most to them.

As a freelance journalist, I take work where I can get it. However, I don’t drive; I’m blind. I live in Des Moines, Iowa and frequently travel to Omaha, Nebraska. It’s only a two-hour drive between the two cities, but my only transit options are a bus or train. Just to get to the train from where I am in Des Moines takes an hour. In addition to the $132 round-trip ticket, it’s another $67 to take an Uber to catch the train. Or, it’s only $15 to Uber downtown for the bus, but round-trip for the bus is $120. Fortunately, I have family in Omaha, so I stay with them when in town. But the only bus circling their neighborhood comes once an hour. And on a recent assignment, I needed to make it to downtown Omaha on a Saturday night—$60 for an Uber.

Earlier this year, I had the opportunity to cover a concert performed by an LGBTQ+ chorus for a local newspaper. Celebrating Pride and writing about it is important to me. I’m bi, but as life would have it, I married a straight, cis man, and I’m a cis woman, so my kids don’t see the daily Queer representation that I want them to experience. Unfortunately, the paper I was writing for wouldn’t cover my travel expenses. And as a blind woman, attending events and activities can come with a steep “disability tax”—the significant extra expenses necessary to live in our bodies that most nondisabled people don’t have to pay.

This comes up quite a bit for me as a disabled parent. For example, during the summer, I try to find a balance between giving my kids unstructured time at home and a busier schedule attending summer programs. Where we live in Des Moines, a single week of a program can cost $300. But most programs offered in our area are not in bus-accessible locations, which is challenging because my husband is blind as well, so we cannot drive our kids to these programs. If we qualify for scholarships, I apply. I ask neighbors and friends to help with transportation, but it’s not always an option. So, we often rely on Uber—another manifestation of the disability tax.

Beyond transportation, disabled people often have many other extra out-of-pocket costs for things like medical equipment, mobility devices, and assistive technology. These things are what enable us to have equal access, although many assume our needs are about special treatment. The added expenses don’t just cut into budgets, which can be limited to begin with. They’re also physically and mentally taxing.

Ultimately, my husband and I are fortunate and have a lot of privilege, because he has a full-time job that pays well with benefits, and I bring in a little supplemental income with my freelance work, so we can afford the added expenses for transportation. This is not the story for all disabled people. Employment and a steady income aren’t opportunities that all disabled people have. In my case, I have multiple degrees and work experience, but I’ve struggled for years to find full-time employment. People don’t see me; they see the white cane I use to get around.

The world is both fascinated by and repulsed by my body. I’m the terror reminding people they are one breath away from disability. But becoming blind, shifting from a bright, vivid world to one that has narrowed to the swirling, rainbow-pops of color against a black background has not been the source of my struggle. The struggle has been encountering a world that places such high costs on my access needs.