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 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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Publication Details

Journal
Scandinavian Journal of Disability Research
Published
2025-01-01
DOI
https://doi.org/10.16993/sjdr.1234
Primary Topic
Mental Health and Patient Involvement
Type
article
Field-Weighted Citation Impact
0.00

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article

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

Stina Melander, Julia Bahner
Scandinavian Journal of Disability Research
Mental Health and Patient Involvement
article

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

Stina Melander, Julia Bahner
article en

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 ‘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.

Scandinavian Journal of Disability ResearchVol. 27(1)
Lund University (SE)
Lunds Universitet
Openalex Percentile: Top 78%
Mental Health and Patient Involvement
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