The Invisible Work of Living With Disability
An absolutely extraordinary essay by Jan Grue in The Guardian questions the way the concept of “disability inclusion” is constructed. Grue, a professor and writer in Norway, uses a wheelchair as a result of his muscular dystrophy. He has access to some of the world’s finest health care, the skills and privilege to advocate strongly for himself, and yet his day-to-day life presents him with obstacle after obstacle.
He argues very compellingly that in our collective social focus on the rights of people with disabilities, which are undeniably important, that we overlook the effort and energy it takes to navigate a world designed by people who are currently abled—as Grune describes it, “a disabling world.”
Grue explicitly links the feminist/womanist theory of ”invisible work,” perhaps most clearly formulated by sociologist Arlene Kaplan Daniels in her 1987 article of the same title, to the everyday life of people with disabilities. Daniels’s chief argument is that Western societies in particular identify “work” strongly with “paid work,” and that therefore, unpaid physical, cognitive, and emotional labor performed by women is taken for granted and not accorded social value.
“In many ways,” Grue writes, “Daniels’ argument applies directly to the invisible work imposed on disabled people by an inaccessible world….the burdens of invisible work tend to exacerbate or even create impairments and chronic illnesses….The salient question about disability and invisible work is therefore very similar to the one about invisible work and gender: what would the world look like if it was no longer carried out?”
Grue goes on to say, “The only way to escape this work, short of a utopian remaking of the world, is to stop living. Disabled people know this. They know that they have the right to access, in principle and in law, but that they must work, continuously, in order to claim this right. They know that this is because there are many institutions, and people, that would much prefer a world without disabled people in it. Not a world without disabling forces; a world without disabled people. And so the invisible work is, at heart, the high cost of living in a disabling world.”
Grue’s piece draws a sharp and necessary contrast between the rhetoric of inclusivity and the reality of the obstacles the world presents to people living with disability. Governments and institutions are quick to seek acclaim for the work they do to enhance access for people with disabilities, but how many of us are familiar with the elevators constantly under repair, the ramps blocked by construction and even street waste, the Zoom meetings without captioning, the vandalized Braille signs that never get replaced? It becomes the job of the people who need accommodations to demand accountability from the people whose job it is to provide them.
