From the archive: The high cost of living in a disabling world

Jan Gruwe, a tenured professor and wheelchair user born in Oslo in 1981 — the same year as the International Year of Disabled Persons — reflects on the gap between the ideals of disability rights legislation and the lived reality of disabled people. He traces the arc of disability rights from the UN Decade of Disabled Persons (1983–1992) through the Americans with Disabilities Act, the UK's Disability Discrimination Act, and the UN Convention on the Rights of Persons with Disabilities (2007), noting that while these legal frameworks represented genuine moral progress, they have not translated into material equality.

Gruwe introduces the concept of 'invisible work' — a term drawn from feminist scholar Arlene Kaplan Daniels — to describe the unrecognized, unpaid labor disabled people must perform simply to exist in a world not built for them. Using the vivid example of a gate at his son's kindergarten that he physically struggles to open, he illustrates how seemingly minor barriers compound throughout a day into an enormous expenditure of physical and emotional energy. He notes that asking for help carries its own emotional cost, sometimes greater than the physical effort of managing alone, and that well-meaning people often avoid offering assistance out of a misguided desire not to reduce him to his wheelchair.

Gruwe draws a parallel between the invisible work imposed on disabled people and the feminist critique of domestic labor — both forms of work sustain social and economic systems while remaining unacknowledged and uncompensated. He argues that invisible disability work supports not just the individual but an entire network of social relations, and that its invisibility perpetuates false meritocracy narratives that claim disabled people now operate on an equal playing field.

He is candid about his own privilege as a white, highly educated man in one of the world's wealthiest welfare states, acknowledging that disability rights frameworks have benefited him more than most disabled people. Citing intersectional analysis from Amir Srinivasan, he argues that anti-discrimination strategies tend to benefit the most privileged within marginalized groups, leaving others further behind.

The pandemic section of the piece is particularly stark. When Gruwe and his family were in California in early 2020, the arrival of COVID-19 instantly multiplied their invisible workload and exposed how conditional disability rights are in a crisis. He knew that if hospitalized, his 180-kilogram wheelchair would be left behind, rendering him helpless. Triage protocols and public health emergency powers allowed governments to deprioritize or eliminate disability services. Quoting Leonard Davis, he argues that the pandemic 'laid bare the deep structure of biopower,' revealing the brutal face beneath the compassionate mask of peacetime ableism.

Gruwe concludes by rejecting what he calls 'neoliberal inclusionism' and calling for a broader conception of work — one rooted not in economic productivity but in the physical reality of effort expended. He cannot envision a world where no greater effort is required of him than of anyone else, and he argues this failure of imagination reflects the depth of structural disablism. Making invisible work visible is, he insists, essential not just for disabled people but for exposing the fundamental falseness of the meritocracy narrative that shapes contemporary society.