For two decades now, we have navigated paperwork and bureaucratic systems with our daughter who has Down syndrome. When she turned 18, there were new systems to navigate—and new questions: What is she eligible for? Who do we contact? Do we need to sign up for something we don’t need right now because the waitlist might be 12 years long? I was afraid that I was going to get it wrong all the time.
Journalist Annie Lowrey, author of The Time Tax, joins me to explore how bureaucracy costs people time and dignity, what our government systems reveal about who matters, and what it would take to build a society where support doesn’t require proving you deserve it. Here’s some of what she shared:
1. Bureaucracy takes more than time.
Applying for benefits, navigating insurance, and filling out paperwork can drain time, money, and energy. For people experiencing disability, financial hardship, etc., these demands can become a burden. Simplifying access to assistance is one way to honor people’s dignity and give them more room to recover from illness or find stability, etc.
2. We don’t all experience government support in the same way.
Tax benefits for homeowners are often understood as something people have earned, while assistance for people with low incomes or disabilities can come with stigma and scrutiny. These differences reveal assumptions about whose needs are legitimate and who deserves help.
3. The way we design systems communicates what we believe about people.
When people seeking assistance are treated as potential fraud risks, they are asked to prove their worthiness at the very moment they need support. The process itself can communicate distrust rather than care.
4. Universal programs can help create a sense of belonging.
Public schools, the Postal Service, and Social Security show how shared systems can serve people without requiring them to repeatedly prove they deserve to participate. When programs benefit a broad range of people, they can also build broader public support.
Hear more from Annie Lowrey on Reimagining the Good Life: The Time Tax: Do We Have to Prove We Deserve Help?
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Amy Julia Becker desires to challenge assumptions about the good life, proclaim the inherent belovedness of every human being, and help us envision and build a world of belonging where everyone matters. Amy Julia invites people to reimagine the good life through her writing and speaking on disability, faith, and culture. She is the author of several books, including To Be Made Well, White Picket Fences, Small Talk, and A Good and Perfect Gift. She is a guest opinion writer for national publications and hosts two podcasts: Take the Next Step and Reimagining the Good Life. Becker is a graduate of Princeton University and Princeton Theological Seminary (MDiv). She is a member of the Disability Ministry Network and the Alliance for Disability Justice and Ethics in Reproductive Genetics. She lives with her husband and their three children in western Connecticut.
