In this commentary, Rachel Litchman explains the “navigation anxiety” she experiences while trying to work within complex, ableist systems that claim to exist to support disabled people.

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 24-year-old poor disabled person, I have had to navigate a lot more systems than the average nondisabled person my age. Because I faced significant trauma growing up, those systems included hospitals, psychiatric and residential facilities, the criminal-legal system, and brief interactions with the child welfare system. Later, I navigated the youth homelessness response system, a network of interconnected services that didn’t always meet my needs. And as a young adult, I have had to navigate the public benefits system, public health clinics, vocational rehab, complex-case management programs, nonemergency medical transit, education-related disability accommodation services, workplace accommodation offices, and so much more.

While the tides are beginning to turn for me economically, thanks to Medicaid’s pandemic-era continuous-enrollment policies as well as the growth of flexible remote work, the reality is that even if I am tentatively no longer poor, I still have had to navigate an enormous number of systems just because of my disability.

Disability activists have often used the term “crip tax” to describe the additional financial costs of being disabled. However, crip tax is much more than a literal tax. It’s everything from the extraordinary costs of assistive devices to the costs of personal care attendants, healthy foods, critical medications, and work missed due to waiting for pick-up by accessible transit.

Like crip tax, “mental load” is a term that feminists frequently use to describe the additional hidden costs of being a woman. However, mental load speaks more to the figurative, invisible costs of having to take on extra behind the scenes labor just to manage relationships, careers, and the day-to-day needs of people who rely on them.

“Crip tax” and “mental load” combined do a good job at defining both the financial and mental costs that disabled people endure from having to navigate systems to get critical needs met. A lot of disabled people I know, including me, will tell you that being disabled is like having a second job. The hours spent on phone calls, filling out paperwork, and collecting medical records just to “prove” deservingness for services we need can add up to hours lost from the day and lost income.

While these administrative burdens are literally taxing, one of the worst consequences is the psychological costs. Over time, it’s caused me to develop what I call “navigation anxiety.” I define it as an anxiety that emerges from having to navigate hostile systems that often don’t have disabled people’s best interest in mind and re-expose us to trauma and systemic violence. Even though most of the systems disabled people have to navigate are claimed to help us or care about us, the reality is that they are, by design, meant to restrict access to the resources we need. Otherwise, there would be no need for administrative burdens. If the resources disabled people sought were actually meant to go to everyone who needed them, then we wouldn’t have to spend a good chunk of our lives fighting to prove we deserve to get what we need to stay alive.

For me, navigation anxiety has shown up as avoidance of systems, fear of making phone calls and filling out forms, struggling with decision-making, and avoidance of particularly harmful systems like emergency rooms, even when I’m in active crisis. Ironically, the navigation anxiety that emerges from having to navigate systems because of my disability is in itself disabling, often preventing me from getting the help I need.

Navigation anxiety isn’t, however, a pathological response. It’s a real response to systems that all too frequently let poor and disabled people down, criminalize us for seeking help, or lead to grave consequences if we make accidental errors from not properly understanding complicated rules and regulations. Navigation anxiety is protective. It makes me feel less responsible for the consequences of my “choice” to seek out harmful help by choosing not to engage with systems at all, even when I badly need their help.

However, these are choices that no disabled person should have to make. We all deserve to get the help we need, and we deserve to not incur any extra financial or psychological costs from doing so. Our systems should be built in ways that don’t reproduce additional trauma, criminalization, and hierarchies of human worth through their actions, and while it will take a lot of advocacy and monumental policy shifts to get there, I believe it is possible.