
Forced Into an Ableist Narrative? The Swedish Covid Association’s Quest for Recognition
By: Stina Melander and Julia Bahner
References
- Bahner, Julia. 2022. “Nothing About Us Without … Who? Disability Rights Organisations, Representation and Collaborative Governance.” International Journal of Disability and Social Justice 2(2):40–64. DOI: 10.13169/intljofdissocjus.2.2.0040
- Bosi, Lorenzo, and Anna Lavizzari. 2023. “How Young Activists Responded to the First Wave of the Covid-19 Crisis in Italy: Variations across Trajectories of Participation.” Mobilization: An International Quarterly 28(1):89–107. DOI: 10.17813/1086-671X-28-1-89
- Charlton, James I. 1998. Nothing About Us Without Us: Disability Oppression and Empowerment. Berkeley: University of California Press. DOI: 10.1525/9780520925441
- Chowaniec-Rylke, Anna. 2019.
“‘Lchad Poland’ and the Fight Against Inequality. The Role of Internet Advocacy in Cases of a Rare Genetic Condition.” In The Routledge Handbook of Disability Activism, edited by Maria Berghs, Tsitsi Chataika, Yahya El-Lahib & Kudakwashe Dube, 289–296. London: Routledge. DOI: 10.4324/9781351165082-23 - Crow, Deserai, and Michael D. Jones. 2018. “Narratives as Tools for Influencing Policy Change.” Policy & Politics 46(2):217–34. DOI: 10.1332/030557318X15230061022899
- Frank, Arthur W. 2013. The Wounded Storyteller. Chicago: The University of Chicago Press.
- Fraser, Nancy. 1993. “Clintonism, Welfare, and the Antisocial Wage: The Emergence of a Neoliberal Political Imaginary.” Rethinking Marxism 6(1):9–23. DOI: 10.1080/08935699308658040
- Garden, Rebecca. 2010. “Disability and Narrative: New Directions for Medicine and the Medical Humanities.” Medical Humanities 36:70–74. DOI: 10.1136/jmh.2010.004143
- Geiss, Carley, and Justine E. Egner. 2022. “Examining Organizational Narratives – Public Appeals of Morality, Emotions and Medical Logic in the Case of Sex Work for Disabled Clients.” Sociological Inquiry 92(3):1029–1052. DOI: 10.1111/soin.12445
- Goodley, Dan, Rebecca Lawthom, Kirsty Liddiard, and Katherine Runswick-Cole. 2019. “Provocations for Critical Disability Studies.” Disability & Society 34(6):972–997. DOI: 10.1080/09687599.2019.1566889
- Grue, Jan. 2014a. “Technically Disabled, Ill for All Practical Purposes? Myalgic Encephalopathy/Chronic Fatigue Syndrome Discourse in Norway.” Disability & Society 29(2):213–223. DOI: 10.1080/09687599.2013.796876
- Grue, Jan. 2014b. “A Garden of Forking Paths: A Discourse Perspective on ‘Myalgic Encephalomyelitis’ and ‘Chronic Fatigue Syndrome.’” Critical Discourse Studies 11(1):35–48. DOI: 10.1080/17405904.2013.829114
- Grue, Jan. 2016. “The Social Meaning of Disability: A Reflection on Categorisation, Stigma and Identity.” Sociology of Health & Illness 38(6):957–964. DOI: 10.1111/1467-9566.12417
- Higashi, Robin T., Allison Tillack, Michael A. Steinman, C. Bree Johnston, and G. Michael Harper. 2013. “The ‘Worthy’ Patient: Rethinking the ‘Hidden Curriculum’ in Medical Education.” Anthropology and Medicine 20(1):13–23. DOI: 10.1080/13648470.2012.747595
- Hoffman, Beatrix. 2012. Health Care for Some: Rights and Rationing in the United States Since 1930. Toronto: University of Toronto Press. DOI: 10.7208/chicago/9780226348056.001.0001
- Jones, Michael D., and Mark K. McBeth. 2010. “Narrative Policy Framework: Clear Enough to be Wrong.” Policy Studies Journal 38(2):329–53. DOI: 10.1111/j.1541-0072.2010.00364.x
- Kleinman, Arthur. 1988. The Illness Narratives: Suffering, Healing and the Human Condition. New York: Basic Books.
- Krantz, Oskar, and Stina Melander. 2024. “Funktionsrättsrörelsen i dag: Kamp för förändring och engagemang.” [“The Disability Rights Movement Today: Struggle for Change and Engagement.”]. In Funktionsförmåga, funktionshinder och socialt arbete edited by Hanna Egard, Ingrid Runesson, and Matilda Svensson Chowdhury, 197–208. Malmö: Gleerups.
- LCE, Long COVID Europe. 2024. “Long COVID Europe.” Accessed November 9, 2024.
https://longcovideurope.org/ - Ludvigsson, Jonas F. 2023. “How Sweden Approached the COVID-19 Pandemic: Summary and Commentary on the National Commission Inquiry.” Acta Paediatrica 112(1):19–33. DOI: 10.1111/apa.16535
- Macpherson, Karen, Kay Cooper, Jenny Harbour, Dawn Mahal, Charis Miller, and Moray Nairn. 2022. “Experiences of Living with Long COVID and of Accessing Healthcare Services: A Qualitative Systematic Review.” BMJ Open 12:
e050979 . DOI: 10.1136/bmjopen-2021-050979 - Mankell, Anna. 2021.
“Collective Patient Participation: Patient Voice and Civil Society Organizations in Healthcare.” PhD diss., Ersta Sköndal Bräcke University College. - Meekosha, Helen, and Russell Shuttleworth. 2009. “What’s So ‘Critical’ About Critical Disability Studies?” Australian Journal of Human Rights 15(1):47–75. DOI: 10.1080/1323238X.2009.11910861
- Rushforth, Alex, Emma Ladds, Sietse Wieringa, Sharon Taylor, Laiba Husain, and Trisha Greenhalgh. 2021. “Long Covid – The Illness Narratives.” Social Science & Medicine 286:114326. DOI: 10.1016/j.socscimed.2021.114326
- Sakalys, Jurate A. 2000. “The Political Role of Illness Narratives.” Journal of Advanced Nursing 31(6):1469–1475. DOI: 10.1046/j.1365-2648.2000.01461.x
- Scully, Jackie Leach. 2020. “Disability, Disablism, and COVID-19 Pandemic Triage.” Bioethical Inquiry 17:601–605. DOI: 10.1007/s11673-020-10005-y
- Sépulchre, Marie, and Lars Lindberg. 2020.
“Swedish Disability Activism – From Welfare to Human Rights?.” In The Routledge Handbook of Disability Activism, edited by Marie Berghs, Tsitsi Chataika, Yahya El-Lahib, and Kudakwashe Dube, 398–411. Abingdon: Routledge. DOI: 10.4324/9781351165082-32 - Shanahan, Elizabeth A., Michael D. Jones, and Mark K. McBeth. 2018. “How to Conduct a Narrative Policy Framework Study.” The Social Science Journal 55(3):332–45. DOI: 10.1016/j.soscij.2017.12.002
- Shenhav, Shaul. 2015. Analyzing Social Narratives. New York: Routledge. DOI: 10.4324/9780203109083
- Smith, Brett, and Monforte, Javier. 2020. “Stories, New Materialism and Pluralism: Understanding, Practising and Pushing the Boundaries of Narrative Analysis.” Methods in Psychology 2:100016. DOI: 10.1016/j.metip.2020.100016
- Strandberg, Gunilla, Gunilla Åström, and Astrid Norberg. 2002. “Struggling to Be/Show Oneself Valuable and Worthy to Get Care.” Scandinavian Journal of Caring Sciences 16(1):43–51. DOI: 10.1046/j.1471-6712.2002.00053.x
- Tarvainen, Merja. 2019. “Ableism and the Life Stories of People with Disabilities.” Scandinavian Journal of Disability Research 21(1):291–299. 10.16993/sjdr.632
- Tarvainen, Merja, and Mari Kivistö. 2023. “Clients’ and Social Workers’ Stories About Discretion in Social Work with Persons with Disabilities.” Qualitative Social Work 23(6):936–950. DOI: 10.1177/14733250231214198
- WHO. 2020. “Disability Considerations During the COVID-19 Outbreak.” Accessed November 7, 2024.
https://www.who.int/publications/i/item/WHO-2019-nCoV-Disability-2020-1
DOI: https://doi.org/10.16993/sjdr.1234 | Journal eISSN: 1745-3011
Language: English
Page range: 299 - 312
Submitted on: Dec 9, 2024
Accepted on: May 28, 2025
Published on: Jun 10, 2025
Published by: Stockholm University Press
In partnership with: Paradigm Publishing Services
Keywords:
© 2025 Stina Melander, Julia Bahner, published by Stockholm University Press
This work is licensed under the Creative Commons Attribution 4.0 License.