Forced Into an Ableist Narrative? The Swedish Covid Association’s Quest for Recognition
Melander, Stina LU and Bahner, Julia LU
(2025)
In Scandinavian Journal of Disability Research
27(1).
p.299-312
- Abstract
During the COVID-19 pandemic, the Swedish Covid Association (SCA) was established to represent individuals with Long COVID (LC). The unique Swedish response to the pandemic, characterized by minimal restrictions, serves as the backdrop for the SCA’s efforts to highlight the specific needs of LC patients, who were largely excluded from pandemic policies and protective measures. Utilizing the Narrative Policy Framework (NPF), this study examines how the SCA advocates for LC patients across micro, meso, and macro levels. Data were collected through analysis of the SCA’s online materials, reports, and interviews with former SCA representatives. The SCA’s narrative positions LC patients as deserving heroes, emphasizing their previous... (More)
During the COVID-19 pandemic, the Swedish Covid Association (SCA) was established to represent individuals with Long COVID (LC). The unique Swedish response to the pandemic, characterized by minimal restrictions, serves as the backdrop for the SCA’s efforts to highlight the specific needs of LC patients, who were largely excluded from pandemic policies and protective measures. Utilizing the Narrative Policy Framework (NPF), this study examines how the SCA advocates for LC patients across micro, meso, and macro levels. Data were collected through analysis of the SCA’s online materials, reports, and interviews with former SCA representatives. The SCA’s narrative positions LC patients as deserving heroes, emphasizing their previous ‘productive’ lives and their entitlement to appropriate healthcare. While this strategy empowers individuals, the focus on the ‘worthy’ patient risks reinforcing ableist standards. Consequently, activists should be cognizant of the potential for their advocacy strategies to inadvertently perpetuate ableist narratives.
(Less)- Abstract (Swedish)
- During the COVID-19 pandemic, the Swedish Covid Association (SCA) was established to represent individuals with Long COVID (LC). The unique Swedish response to the pandemic, characterized by minimal restrictions, serves as the backdrop for the SCA’s efforts to highlight the specific needs of LC patients, who were largely excluded from pandemic policies and protective measures. Utilizing the Narrative Policy Framework (NPF), this study examines how the SCA advocates for LC patients across micro, meso, and macro levels. Data were collected through analysis of the SCA’s online materials, reports, and interviews with former SCA representatives. The SCA’s narrative positions LC patients as deserving heroes, emphasizing their previous... (More)
- During the COVID-19 pandemic, the Swedish Covid Association (SCA) was established to represent individuals with Long COVID (LC). The unique Swedish response to the pandemic, characterized by minimal restrictions, serves as the backdrop for the SCA’s efforts to highlight the specific needs of LC patients, who were largely excluded from pandemic policies and protective measures. Utilizing the Narrative Policy Framework (NPF), this study examines how the SCA advocates for LC patients across micro, meso, and macro levels. Data were collected through analysis of the SCA’s online materials, reports, and interviews with former SCA representatives. The SCA’s narrative positions LC patients as deserving heroes, emphasizing their previous ‘productive’ lives and their entitlement to appropriate healthcare. While this strategy empowers individuals, the focus on the ‘worthy’ patient risks reinforcing ableist standards. Consequently, activists should be cognizant of the potential for their advocacy strategies to inadvertently perpetuate ableist narratives. (Less)
- author
- Melander, Stina
LU
and Bahner, Julia
LU
- organization
- publishing date
- 2025-06-10
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- Disability rights, Illness narratives, Online activism, Patient advocacy, Public health policy
- in
- Scandinavian Journal of Disability Research
- volume
- 27
- issue
- 1
- pages
- 14 pages
- publisher
- Stockholm University Press
- external identifiers
-
- scopus:105008329537
- ISSN
- 1501-7419
- DOI
- 10.16993/sjdr.1234
- project
- Representation in the digital era: Democratic consequences of changing engagement in the Swedish disability movement
- language
- English
- LU publication?
- yes
- additional info
- Publisher Copyright: © 2025 The Author(s).
- id
- fbe8f5bf-3da3-4c14-b113-bc55cc550693
- date added to LUP
- 2025-06-25 11:20:50
- date last changed
- 2025-06-26 08:39:13
@article{fbe8f5bf-3da3-4c14-b113-bc55cc550693,
abstract = {{<p>During the COVID-19 pandemic, the Swedish Covid Association (SCA) was established to represent individuals with Long COVID (LC). The unique Swedish response to the pandemic, characterized by minimal restrictions, serves as the backdrop for the SCA’s efforts to highlight the specific needs of LC patients, who were largely excluded from pandemic policies and protective measures. Utilizing the Narrative Policy Framework (NPF), this study examines how the SCA advocates for LC patients across micro, meso, and macro levels. Data were collected through analysis of the SCA’s online materials, reports, and interviews with former SCA representatives. The SCA’s narrative positions LC patients as deserving heroes, emphasizing their previous ‘productive’ lives and their entitlement to appropriate healthcare. While this strategy empowers individuals, the focus on the ‘worthy’ patient risks reinforcing ableist standards. Consequently, activists should be cognizant of the potential for their advocacy strategies to inadvertently perpetuate ableist narratives.</p>}},
author = {{Melander, Stina and Bahner, Julia}},
issn = {{1501-7419}},
keywords = {{Disability rights; Illness narratives; Online activism; Patient advocacy; Public health policy}},
language = {{eng}},
month = {{06}},
number = {{1}},
pages = {{299--312}},
publisher = {{Stockholm University Press}},
series = {{Scandinavian Journal of Disability Research}},
title = {{Forced Into an Ableist Narrative? The Swedish Covid Association’s Quest for Recognition}},
url = {{http://dx.doi.org/10.16993/sjdr.1234}},
doi = {{10.16993/sjdr.1234}},
volume = {{27}},
year = {{2025}},
}