Disability and the Worship of Work – Somatosphere


Between 1939 and 1945, the Nazis murdered nearly 300,000 disabled people: in gas chambers, by poison or overdose, or simply by leaving them to starve (Herzog 2025, 1). Epileptics, wheelchair users, the mentally ill, and the intellectually disabled were targeted. But what mattered most was whether a person could work. Those who were killed were “useless eaters” (Herzog 2025, 75). They took without giving. Buses pulled up to asylums to take them away.

My 25-year-old daughter Millie would have been on one of those buses. She has a seizure disorder. She doesn’t walk independently and has little hand-eye coordination. She has a dangerously contagious giggle, but she doesn’t speak or sign. Low incidence, multiply disabled, severe and profound: these are some of the labels she has worn. But as early as middle school, special educators began proposing possible careers for her, from petting kittens at the animal shelter to wiping tables at a pizzeria. They concocted a future for Millie as a productive citizen, someone who works and pays taxes—in short, a normal adult. These ostensibly cheerful plans, however, contained a menacing message: that Millie’s life was only worthy to the degree it was useful. Is human worth really something that needs to be earned?

The ideas that justified the euthanasia killings predated the Nazis, and it took decades for Germany to recognize them as crimes. The historian Dagmar Herzog (2025) documents the murders’ prehistory and afterlife in her recent book, The Question of Unworthy Life: Eugenics and Germany’s Twentieth Century. In the United States, politicians love to talk about the dignity of labor. Nothing could seem more innocent than the suggestion that people should contribute to society. For people like Millie, this conceit has proven lethal.

It’s about to prove lethal again.

On January 22, 2025, Russell Vought, President Donald Trump’s nominee for the Office of Budget Management, proposed adding a work requirement to Medicaid.[1] On February 6, he was confirmed. On February 24, the House of Representatives passed a budget calling for $2 trillion in cuts, despite President Trump’s pledge to protect the program. On July 4, President Trump signed the One Big Beautiful Bill into law, and American states lost $1.02 trillion in federal Medicaid support. Over a million immigrants who are in the country legally are expected to lose health coverage as a result of new restrictions.[2] Starting after the 2026 midterm elections, new work requirements will remove other recipients from the rolls.

In 2020, eleven percent of Medicaid recipients were disabled, many of them severely.[3] That’s ten million people. Medicaid pays for wheelchairs, ventilators, and home health workers. Disabled people with high support needs will be exempted from the work requirement, or at least so we’re told, but the cuts will wreak havoc in their lives (see Rutherford 2025a, 2025b). Caregivers aren’t simply paid through Medicaid; those who are low income depend on Medicaid for their own coverage. Some are family members with no other access to paid labor. Others are skilled workers who will risk losing coverage should their hours change or their clients move or die. Now more than ever we need to scrutinize what is at stake when governments design social programs around the worship of work.

This is a good moment to be reading Herzog’s book.

History is filled with moments when bad ideas come from people who believe they are doing good. The characters who stand out most strongly in Herzog’s story are the German Protestant leaders who founded the first institutions for the mentally impaired. The idea of removing intellectually disabled people from their families and attempting to train them first took hold among members of the so-called “Inner Mission,” founded in 1849 to minister to alcoholics, orphans, and the sick.

Taken up by educators and psychiatrists, the sorting of disabled children into more or less trainable groups helped create a category of person most suited to Christian charity: “care cases,” people like my daughter. Instead of attending remedial schools, people with high support needs lived out their days in asylums alongside the mentally ill. In 1920, when the lawyer Karl Binding and the psychiatrist Alfred Hoche published their infamous pamphlet, “Permission to Annihilate Life Unworthy of Life,” it was the care cases they had in mind. It would save money—and be a kindness, given what the authors imagined as their painful, limited existence—simply to put these people to death.

In 1929, the American Nobel Laureate Pearl Buck sent her disabled nine-year-old daughter to the Training School in Vineland, New Jersey (see Doll 1988, Buck 1992). In the late nineteenth century, ground was laid in the United States for this way of conceptualizing care for the disabled: instead of almshouses, people like Buck’s daughter lived in “colonies,” rural institutions that doubled as farms. Some institutions excluded people as disabled as my daughter: inmates who couldn’t work the land were bad for the balance sheet (Cohen 2015, 42, 45). In others, people like Buck’s daughter cared for people like my daughter: a measure that both saved money and busied idle hands.

As in Germany, Protestant ministers, like the Training School’s founder, took the lead, creating a field of action for a growing cadre of psychiatrists, psychologists, educators, and geneticists. Presidents (like Theodore Roosevelt), feminists (like Margaret Sanger), and reformers of all stripes cheered them on. Forced sterilization was legal in many parts of the United States nearly thirty years before it was mandated in Germany (see Cohen 2025). It was justified in both countries using the same rationale: the need to eliminate that portion of the population that was a drain on society.

Pearl Buck’s daughter learned to read and play basketball; she listened to records and made friends. It’s hard not to love a system that invested in the improvement of people long relegated to the margins of society. But beneath the soft surface lay a hard core of violence. Those who didn’t improve had no right to exist.

“Work Sets You Free” says the sign over the entrance to Auschwitz. A few of the disabled people selected for the gas chambers turned out to be too useful to lose— an asylum administrator’s favorite cook; a man kept alive because the physician in charge of the killings needed someone to polish his boots. In the second phase of the operation, more mildly disabled inmates held down those chosen for lethal injection and buried the bodies of the dead (Herzog 2025: 71).

By and large, the German Protestants who ran the asylums complied with this mission and gave over the disabled people entrusted to their care. After the war, Protestant charities continued to run large institutions, whose residents lived in the same misery as they had when the Nazis came into power. The physicians who committed the murders never faced prosecution. It wasn’t until 2007 that the Nazi sterilization laws were formally repudiated (Herzog 2025, 108).

All this seems uniquely horrific until one remembers the notorious state school for children with intellectual disabilities at Willowbrook in Staten Island, New York. As late as the 1980s, Americans like my daughter were living in filthy, overcrowded institutions. In 2021, 31 American states still had forced sterilization laws on the books.[4] From American ideas about citizenship, to the standards hospitals use to allocate care, disdain for the disabled remains. The assumptions that support this sad state of affairs are like so many oversized pieces of furniture. It’s easy to take them for granted and it will take a concerted effort to budge them. “Why,” Herzog (2025, 6) asks of Germany, “in the postfascist era, had it still been so agonizingly difficult to find compelling language and to enact concrete policies and practices to defend, or even to cherish, the positive value of disabled lives?”

Why is it still so hard in the United States?

It’s easy for Americans to think eugenics is over when they don’t know how and why it began. In 1883, the British polymath, Francis Galton, coined the term eugenics. By 1889, the supervisor of the Pennsylvania Training School for Feebleminded Children at Elwyn was already castrating boys in his care (see Kevles 1985, loc. 2147). Max Weber wrote The Protestant Ethic and the Spirit of Capitalism in 1904. Weber’s classic book describes the moral significance many Americans still attach to labor—to prove they are deserving, people must work.

Eugenics swapped out salvation of the soul for salvation of the nation: the population had to be productive for the nation to be saved. Racism, sexism, xenophobia, fear of crime—these fed elite white Protestant support for eugenics in a changing United States (Cohen 2015). In Germany, eugenics took root in a society ravaged by war. But the worship of work is a through-line in these histories. Even critics of eugenics have absorbed this premise. “I’ve worked eleven years at the same job,” protested a sterilization victim discussed by Edwin Black ([2003] 2012, 42)—as if the violence would have been warranted if the man had not been gainfully employed.[5]

Herzog ends her book on a note of cautious optimism. In the 1980s, a new generation of activists, advocates, and scholars, in both the East and the West, began to imagine “what it would mean to consider individuals with disabilities as full human beings” (2025, 77). Herzog devotes several chapters to their achievements, and her closing words are a call to arms. “It is up to all of us to complete the revolution in practice and in attitude of which the antipostfascists first dreamed” (Herzog 2025, 215).

That’s not the direction the United States is heading.

My daughter has surfed through life on the wave set in motion by the passage of the Americans with Disabilities Act in 1990, and, before that, the Education for All Handicapped Children Act in 1975. She enjoyed the right to a “free and appropriate education in the least restrictive setting”; if her schools had fallen short, I could have sued.[6] The school district devoted years of preparation for her “transition” from the school system to the workplace.

I thank this program for the fact that Millie can work, albeit as a volunteer: twice a week, she shows up in kindergarten classrooms and shares a story. Millie always arrives with an entourage of helpers: she can’t play the video or operate her voice output device on her own. Federal and state taxpayers pay for the aides that allow Millie to perform this role. They also pay for the care providers who are with her 24/7 keeping her fed, bathed, and clothed, and who administer the medications that keep her seizure free. If I had to prove that caring for Millie was worth it in monetary terms, I could not.

But that’s where appeals to the dignity of labor are leading. American politicians worship work when they force welfare recipients to seek employment or else lose their benefits. They prove their devotion when they extend this requirement to Medicaid recipients, as the Trump administration has now done. They take their observances to an extreme when they apply these policies to disabled people who receive retirement income or survivor benefits and must pay a high share of cost unless they can prove they have a job (Rutherford 2025a). They denigrate dependency, despite the fact that it is a defining characteristic of our species. They make independent living the only acceptable goal. In California, where I live, disabled people have never had it better, with classrooms and cafes, bowling alleys and stables, set up to welcome people like my daughter. But people like Millie often can only enter under the cloak of normalcy, as if to show up otherwise would be to be damned. The warp of that cloak is the fear of difference. The weft is the worship of work.

It might seem like I’m forgetting something crucial. Disabled activists fought hard for the right to pursue careers. What about Bob Kafka, Michael Winter, Wade Blank, and Jennifer Keelan, celebrated in Lennard Davis’s (2016) history of the struggle: didn’t they deserve a share in the dignity of work? But these wheelchair users didn’t crawl up the steps of the Capitol to be useful. They did it to change the world. As Robert Chapman (2023) makes clear, it’s alienated labor that’s the problem: the kind that turns people into tools. For Millie, and others like her, work is not about productivity but community. It’s here that our thinking needs to begin: not with what disabled people can contribute, but who together we all can become. The American president doesn’t agree. Trump reportedly told his nephew, who has a son much like my daughter, “Maybe you should just let him die” (Trump 2024, 313 in Winter 2024).

It’s not easy to unlearn truths that have been drilled into our collective psyche. But in these grim and deadly times, we have no choice but to try. This is the lesson of Dagmar Herzog’s remarkable study. It may seem like heresy. But it’s time to stop worshipping work. 


[1] See Noah Weiland, “Key Trump Nominee Hints at Push for Work Requirements in Medicaid,” New York Times, January 22, 2025, https://www.nytimes.com/2025/01/22/us/politics/russell-vought-trump-healthcare.html; Margaret Sanger-Katz and Alicia Parlapiano, “What Can House Republicans Cut Instead of Medicaid? Not Much,” New York Times, February 25, 2025, https://www.nytimes.com/2025/02/25/upshot/republicans-medicaid-house-budget.html?smid=nytcore-ios-share&referringSource=articleShare; The White House, “President Trump’s One Big Beautiful Bill Is Now the Law,” July 4, 2025, https://www.whitehouse.gov/articles/2025/07/president-trumps-one-big-beautiful-bill-is-now-the-law/. See also “The Truth about the One Big Beautiful Bill Act’s Cuts to Medicaid and Medicare,” Center for American Progress, https://www.americanprogress.org/article/the-truth-about-the-one-big-beautiful-bill-acts-cuts-to-medicaid-and-medicare/.

[2] See Drishti Pillai, Alisha Rao, and Samantha Artiga, “1.4 Million Lawfully Present Immigrants Are Expected to Lose Health Coverage Due to the 2025 Tax and Budget Law,” KFF, September 25, 2025, https://www.kff.org/immigrant-health/1-4-million-lawfully-present-immigrants-are-expected-to-lose-health-coverage-due-to-the-2025-tax-and-budget-law/#:~:text=Under%20the%20new%20law%2C%20Medicare,based%20on%20your%20personal%20preferences.

[3] See Medicaid Enrollees Who Qualify for Benefits Based on Disability in 2020, https://www.medicaid.gov/sites/default/files/2023-08/disbility-data-brf.pdf

[4] See The National Women’s Law Center with Help from the Autistic Women and Non-Binary Network, “Forced Sterilization of Disabled People in the United States,” https://nwlc.org/wp-content/uploads/2022/01/%C6%92.NWLC_SterilizationReport_2021.pdf.

[5] As Maren Linett (2024) points out, a back-handed endorsement of eugenics is common in many books on the topic. When authors point out that many of those labeled “feeble minded” were of normal intelligence, they imply that eugenics was justified for those who are not. See also Simplican 2015.

[6] See “A History of the Individuals with Disabilities Education Act,” https://sites.ed.gov/idea/IDEA-History.


References

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Buck, Pearl S. [1950] 1992. The Child Who Never Grew: A Memoir. Bethesda, MD: Woodbine House.

Carter, Julia. 2025. “Reconciliation Bill Timeline Stretches Far into Future, Giving Some Opportunities for Correction.” Medicare Rights Center, July 17. https://www.medicarerights.org/medicare-watch/2025/07/17/reconciliation-bill-timeline-stretches-far-into-future-giving-some-opportunities-for-correction.

Center for American Progress, and The Arc. n.d. “The Truth about the One Big Beautiful Bill Act’s Cuts to Medicaid and Medicare.” Center for American Progress. Accessed August 13, 2025. https://www.americanprogress.org/article/the-truth-about-the-one-big-beautiful-bill-acts-cuts-to-medicaid-and-medicare/.

Chapman, Robert. 2023. Empire of Normality: Neurodiversity and Capitalism. London: Pluto Press.

Cohen, Adam. 2015. Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck. New York: Penguin.

Davis, Lennard J. 2016. Enabling Acts: The Hidden Story of How the Americans with Disabilities Act Gave the Largest U.S. Minority Its Rights. Boston: Beacon Press.

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Medicaid.gov. 2020. Medicaid Enrollees Who Qualify for Benefits Based on Disability in 2020. U.S. Department of Health and Human Services. https://www.medicaid.gov/medicaid/data-and-systems/downloads/macbis/disbility-data-brf.pdf.

National Women’s Law Center, with Help from the Autistic Women and Non-Binary Network. 2021. “Forced Sterilization of Disabled People in the United States.” https://nwlc.org/wp-content/uploads/2022/01/%C6%92.NWLC_SterilizationReport_2021.pdf.

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———. 2025b. “Trump and the GOP Don’t Care for Health Caregivers.” Salon, July 29. https://www.salon.com/2025/07/29/trump-and-the-gop-dont-care-for-health-caregivers/.

Sanger-Katz, Margaret, and Alicia Parlapiano. 2025. “What Can House Republicans Cut Instead of Medicaid? Not Much.” New York Times, February 25. https://www.nytimes.com/2025/02/25/upshot/republicans-medicaid-house-budget.html.

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Simplican, Stacy Clifford. 2015. The Capacity Contract: Intellectual Disability and the Question of Citizenship. Minneapolis: University of Minnesota Press.

Stewart, Shelley III. 2023. “The Impacts of Climate Change on Black Communities.” Forbes, December 18. https://www.forbes.com/sites/shelleystewart/2023/12/18/the-impacts-of-climate-change-on-black-communities/

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