Claiming Black Lung: Towards an Appalachian Disability Justice

by Rebecca E. Long

Early travel writing and scholarship constructed Appalachia as a problem, deviant, a region to be brought in line with the rest of the country.^[1] Part of this deviance included viewing Appalachians as mentally and/or physically deficient, thus making disability part of the region’s stigmatized history that scholars and activists have worked hard to refute. While scholars have critically examined other aspects of Appalachian diversity, disability has been left nearly untouched.

Instead of spurning a regional history of disability, what if we questioned it? Is it possible that the push against interrogating disability buries histories of disability resistance that might contribute to broader conversations about Appalachian activism? How might familiar histories become new?

With these questions in mind, I consider black lung activism as a form of disability rights protest. The Black Lung Association, Miners for Democracy and other related organizations brought healthcare as a major issue into the coal mining labor platform, often in the process of challenging the shortcomings of the United Mine Workers of America (UMWA).

The categorization of disability and what qualifies as disability-issues is never neutral. As Jasbir Puar reminds us, “disability is not a fixed state or attribute, but exists in relation to assemblages of capacity and debility, modulated across historical time, geopolitical space, institutional mandates, and discursive regimes.”^[2] Disability in Appalachia has been a stereotype used to disempower residents seeking welfare. Seeking disability benefits in Appalachia is described as “emotionally fraught” and “bound up with self-image,” making it difficult to engage with disability outside of this stigma.^[3]

Rather than rejecting disability outright, there is power in engaging with disability as a politicized identity. Alison Kafer argues that positioning disability as something more than a problem to be eradicated can lead to activist responses, through the process of “seeing ‘disability’ as a potential site for collective reimagining.”^[4] I propose claiming the black lung movement as an example of disability rights organizing that is omitted from the history of the disability rights movement, which instead focuses on events such as the 504 sit-ins and protests leading up to the passage of the ADA. Yet, if we are to take disability historians’ claim that understanding disability is essential to our history, then we need to look beyond major events into more peripheral areas. The black lung movement fought to claim black lung as a disability and this “required the active intervention of coal miners themselves.”^[5]

Class and power relations suppressed the ability to provide effective disease recognition and treatment for miners. 19th century pulmonary specialists on both sides of the Atlantic identified black lung as an illness and linked it to coal dust exposure in the workplace. Despite this knowledge, doctors in the coalfields and the mining industry assumed a markedly skeptical stance, taking the approach that breathing difficulties in coal miners was normal, thus not requiring medical intervention.^[6] One miner said that they were told that breathing in coal dust was healthy, even beneficial.^[7] When doctors and coal companies recognized breathing difficulties as an illness, they often ignored the causative mechanism. Aside from dust, other proposed causes for respiratory disease were underground gasses, stress, and the subterranean work environment. Changing technology, which allowed for more precise diagnostic standards and testing, and an increased reliance on x-ray imaging — an imperfect marker of black lung — further complicated proving disablement.^[8]

Bill Worthington, president of the Black Lung Association, describes the challenges faced by disabled miners:

Our people were dying. They weren’t getting benefits. Coal companies were making millions of dollars off of us, and then, when we got too sick to work, they said we had ‘miner’s asthma’ for which there’s no compensation. You were just out. You went to the poor house or started begging.^[9]

Rank-and-file miners fought to bring black lung to the public’s attention. In 1968, a strike of 43,000 West Virginia miners demanded state disability benefits.^[10] Smith credits this same year as bringing “a violent climax to nearly a decade of social upheaval [as] coal miners and their families began to act collectively on the black lung problem.”^[11] Through all this, the United Mine Workers of America (UMWA) took a rather hands-off approach, drawing ire from constituents. At the 1968 UMWA convention, union President Tony Boyle failed to call for workplace changes that could have prevented black lung, instead urging districts to take up the cause on a state-by-state legislative basis, leaving it up to the miners to advocate for change.^[12]

The following year, rank-and-file miners, community activists, politicians, and doctors formed the Black Lung Association in West Virginia. Wildcat strikes and other collective protests organized by the Black Lung Association in West Virginia brought the coal industry to a halt and led to the passage of a state black lung bill. This bill set a maximum dust standard, but did not go far enough for many activists due to the high allowable dust threshold and the lack of a federal benefits program.^[13] The Black Lung Association lobbied for a more drastic, comprehensive federal intervention.

Federal interventions were not always effective at addressing the demands of black lung activists. In 1969, President Richard Nixon signed the Federal Coal Mine Health and Safety Act. Initially received as a victory by the Black Lung Association, in practice this act had little power to enforce compliance.^[14] Though it included regulations for regular mine safety inspections, one year after it was signed into law, an explosion killed 38 miners in Hurricane Creek, Kentucky. Once again, miners mobilized, including a letter writing campaign to the Bureau of Mines, an agency within the Department of the Interior responsible for overseeing the Coal Mine Health and Safety Act.

It took an additional round of campaigning to enact widespread, meaningful change. The Black Lung Benefits Act was passed in 1972 thanks to impressive grassroots organizing. Smith describes the 1972 amendments as “a clear-cut political victory by the black lung movement—much more so than the West Virginia compensation law for which the movement is known.”^[15] This allowed leaders from the Black Lung Association to meet with the Social Security Administration and participate in the process of developing the administration of the black lung benefits program. The black lung movement “radiated out through the crisscrossing social ties of the rural coalfields” and “united across the gulfs of race and gender,” suggesting that concern over disability bridged prevalent social divides.^[16]

The black lung movement shows that disability functions as a powerful force in creating cultural groups. Not only did it unify Appalachian coal miners and their families from diverse backgrounds, it also influenced nation-wide occupational disability movements. Along with workers from southern textile mills claiming brown lung disease and workers exposed to asbestos who suffered from white lung, Appalachian residents with black lung disease were part of the wider-spanning Breath of Life Organizing Campaign.^[17] This group held the first national Congress for Disabled Workers in 1982 and organized to campaign for better disability benefits. The workers came from diverse backgrounds, geographically spanning fifteen states, making this an instance of cross-disability solidarity and organizing. What united the workers were similar stories about breathing difficulties, problems with lawyers and compensation hearings, and efforts to improve workplace health conditions, as well as sharing a class-based ideology that the workers unfairly bore the brunt of occupational disease.

By today’s understanding of rights-based lobbying as being able to access government services and protections for miners and their families, the black lung movement lobbied for and achieved disability rights. Miners did not seek to abolish institutions but maintained faith in their ability to provide better working conditions.^[18] Though these reforms were far from perfect, disabled miners were able to achieve a degree of political reform. Their experiences of disability did not hinder them from being active political participants, but rather, were a key part of this process, even leading to mutual aid and support groups.^[19]

Whereas the black lung movement focused on rights, the more recent concept of disability justice recognizes that rights are granted by a settler-colonial, cisheteropatriarchal state and acknowledges the need for intersectional, cross-movement solidarity led by those who are most impacted.^[20]

Disability alliances are not always simple. For example, the alliance between disability and labor is complicated. In the disability justice framework, anti-capitalism is a key concept, as many disabled bodies do not meet typical standards of productivity. Disability scholars and advocates reject the idea that disability is a personal problem to be solved while labor activists frame disability as a tragedy to be feared or prevented.^[21] Grappling with these conflicting frameworks opens up new ways of understanding the politicization of disability, pushing towards disability justice futures, even in places that might seem unlikely.

Rebecca E. Long is an applied anthropologist living and working in western North Carolina. They are currently earning a master’s degree at the Center for Appalachian Studies at Appalachian State University, where they do research at the intersection of Appalachian and Disability Studies. Their research interests include creating sustainable communities for individuals with disabilities and the intersection of disability and environmental justice. They are also a leader in disability organizing and inclusion on their campus and are president of the Autistic Students and Allies of the High Country.

Further Reading

^[1] Shapiro, Henry D., Appalachia On Our Mind: The Southern Mountains and Mountaineers in the American Consciousness, 1870-1920 (Chapel Hill: University of North Carolina Press, 1978).

^[2] Puar, Jasbir K., The Right to Maim : Debility, Capacity, Disability (Duke University Press: Durham, NC, 2017), xiv.

^[3] Spirko, Rob, “In Appalachia, Disability Stigma Has Dangerous Effects,” Rooted in Rights (September 21, 2018). https://rootedinrights.org/in-appalachia-disability-stigma-has-dangerous-effects/

^[4] Kafer, Alison, Feminist Crip Queer (Bloomington: Indiana University Press, 2013), 9.

^[5] Nielsen, Kim E., A Disability History of the United States (Boston: Beacon Press, 2012), xiii.

^[6] Smith, Digging Our Own Graves, 17.

^[7] Lynd, Alice, and Robert Staughton Lynd, Rank and File: Personal Histories by Working-Class Organizers (Princeton: Princeton University Press, 2014), 287.

^[8] Smith, Digging Our Own Graves, 151.

^[9] Quoted in Lynd and Lynd, Rank and File, 287.

^[10] Gaventa, John, Power and Powerlessness: Quiescence and Rebellion in an Appalachian Valley (Urbana, IL: University of Illinois Press, 1980), 175.

^[11] Smith, Digging Our Own Graves, 108.

^[12] United Mine Workers of America, Proceedings of the 45th Constitutional Convention  (Washington, DC: UMWA, 1968), 320-21.

^[13] Fry, Richard, “Dissent in the Coalfields: Miners, Federal Politics, and Union Reform in the United States, 1968–1973,” Labor History 55.2 (2014):177.

^[14] Fry, “Dissent in the Coalfields,” 175.

^[15] Smith, Digging Our Own Graves, 173.

^[16] Smith, Digging Our Own Graves, 112 & 166.

^[17] Judkins. Bennet M., “The People’s Respirator: Coalition Building and the Black Lung Association,” in Fighting Back in Appalachia: Traditions of Resistance and Change, ed Stephen L. Fisher (Philadelphia: Temple University Press, 1993), 224-241.

^[18] Fry, “Dissent in the Coalfields,” 175.

^[19] Carroll, Marilyn, “Appalachian Coal Miners Combine Mutual Help and Advocacy,” Public Health Reports 114.4(1999): 326–27.

^[20] Berne, Patty, “Disability Justice – A Working Draft” Blog post on Sins Invalid, June 9, 2015. https://www.sinsinvalid.org/blog/disability-justice-a-working-draft-by-patty-berne; Piepzna-Samarasinha, Leah Lakshmi, Care Work: Dreaming Disability Justice  (Vancouver, BC: Arsenal Pulp Press, 2018).

^[21] Nielsen, Kim E., “Disability and Labor Activism: The Pains and Joys of Coalitions,” in Civic Labors: Scholar Activism and Working-Class Studies, eds.  Dennis A. Deslippe, Eric Fure-Slocum, and John W. McKerley (Urbana: University of Illinois Press), 237–45.