Forced Into an Ableist Narrative? The Swedish Covid Association’s Quest for Recognition

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 pati...

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Main Authors: Stina Melander, Julia Bahner
Format: Article
Language:English
Published: Stockholm University Press 2025-06-01
Series:Scandinavian Journal of Disability Research
Subjects:
Online Access:https://account.sjdr.se/index.php/su-j-sjdr/article/view/1234
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author Stina Melander
Julia Bahner
author_facet Stina Melander
Julia Bahner
author_sort Stina Melander
collection DOAJ
description 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.
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spelling doaj-art-440a07192f0a421eb225e4b20f2bd0602025-08-20T03:51:09ZengStockholm University PressScandinavian Journal of Disability Research1745-30112025-06-01271299–312299–31210.16993/sjdr.12341234Forced Into an Ableist Narrative? The Swedish Covid Association’s Quest for RecognitionStina Melander0https://orcid.org/0000-0003-1244-6037Julia Bahner1https://orcid.org/0000-0001-8526-3659Lund UniversityLund UniversityDuring 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.https://account.sjdr.se/index.php/su-j-sjdr/article/view/1234patient advocacyillness narrativesdisability rightsonline activismpublic health policy
spellingShingle Stina Melander
Julia Bahner
Forced Into an Ableist Narrative? The Swedish Covid Association’s Quest for Recognition
Scandinavian Journal of Disability Research
patient advocacy
illness narratives
disability rights
online activism
public health policy
title Forced Into an Ableist Narrative? The Swedish Covid Association’s Quest for Recognition
title_full Forced Into an Ableist Narrative? The Swedish Covid Association’s Quest for Recognition
title_fullStr Forced Into an Ableist Narrative? The Swedish Covid Association’s Quest for Recognition
title_full_unstemmed Forced Into an Ableist Narrative? The Swedish Covid Association’s Quest for Recognition
title_short Forced Into an Ableist Narrative? The Swedish Covid Association’s Quest for Recognition
title_sort forced into an ableist narrative the swedish covid association s quest for recognition
topic patient advocacy
illness narratives
disability rights
online activism
public health policy
url https://account.sjdr.se/index.php/su-j-sjdr/article/view/1234
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