The impact of COVID-19 on disabled citizens in Sweden

KritFunk – Critical Disability Studies Network Sweden

by Liz Adams Lyngbäck, Christine Bylund, Claudia Gillberg, Geoff Jones, Lill Hultman, Mia Larsdotter, Julia Bahner and Becky Nelson of KritFunk – Critical Disability Studies Network Sweden

 

Disabled citizens in Sweden had already, prior to the COVID-19 pandemic, been struggling to access adequate support and services, and fighting against austerity measures (Brennan, Traustadóttir, Anderberg & Rice 2016; Johansson 2019; Norberg 2019; Näsman 2016; Pettersson 2015). We now note grave deficiencies in the overarching preparedness and responses to the pandemic. Although both WHO (2020) and UNESCO (2020) issued specific recommendations for disability services and vulnerable populations, there is little information about such necessary measures from Swedish agencies. The Swedish Public Health Agency (2020) has issued limited statements with regard to chronic disease, or mental and physical disabilities other than one referring to generic age-related vulnerabilities (70+). At the same time, the intensive care guidelines with their focus on treating those with ‘the greatest chance of survival’ has illuminated worrying approaches to the right to equal health care.

We see two areas where disabled and chronically ill people are especially vulnerable, namely communication and social isolation, which will be discussed by drawing on several examples.

Communication

Many disabled citizens in Sweden face difficulties using the Internet due to the inaccessible design of devices, platforms and content (Johansson 2019). Social distancing practices have increased dependency on online communication, for important information, goods and services. Limited access to digital resources poses a major risk to the safety of many citizens with communication-related impairments.

The government and responsible agencies have held daily press conferences informing the public about current developments, but for 33 days there was no information in Swedish Sign Language (STS) available from the national authorities, including the Swedish 1177 Care Guide website, something highlighted by the Swedish National Deaf Association (SDR). Information in easy-to-read Swedish was also missing. Furthermore, the Association of the Swedish Deafblind (FSDB) pointed out a failure to develop guidelines for handling the demands of social distancing for people using tactile communication.

Social distancing

The primary response in Swedish policy to the pandemic is social distancing, specifically recommending the elderly (70+) stay at home and avoid ‘ill people’ – something that is impractical and medically illiterate given the ability of COVID-19 to be spread by infected but asymptomatic citizens (Wölfel et al, 2020, Swedish Public Health Agency 2020). 

Many disability services lack personal protective equipment (PPE) and clear directives regarding safety requirements for service users, their relatives and staff. There are also concerns regarding not having enough personal assistance (PA) hours for children and young PA users required to stay at home due to the closure of upper secondary schools and who usually get their support from student aides. 

While upper secondary schools and universities have closed, Swedish government policy demands primary-age children go to school, meaning that school presenteeism overrules considerations of children as viral hosts. There is no mention of chronically ill parents who would be placed at risk of infection from their children, giving such parents cause for reflection on whether to leave Sweden and seek refuge elsewhere (Gillberg & Jones forthcoming).

For many intellectually disabled people, their work in assisted workplaces and daily activity centres provides their primary context for socialising. People have reported being discouraged from attending such activities, resulting in loneliness and poor mental health for some participants. 

 

Concluding thoughts

Against the backdrop of international recommendations and ethical guidelines during a pandemic, we preliminarily conclude that Sweden’s response concerning disabled and chronically ill people has been poor. In particular, an understanding of the multiple meanings, complexities and implications of and for disabled people’s lives is lacking. The elderly are, with few exceptions, the only demographic group receiving a modicum of specific consideration, highlighting a serious lack of awareness regarding health-related issues for disabled people. Through centring the discussion of vulnerability to COVID-19 on biological age, the vulnerability of disabled and ill children and adults has been ignored. Conversely, the intensive care guidelines with their focus on treating those with ‘the greatest chance of survival’ places ill and disabled people, regardless of age and other health factors, as collateral damage in the fight against COVID-19.

 

References

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Brennan, C., Traustadóttir, R., Anderberg, P., & Rice, J. (2016) Are Cutbacks to Personal Assistance Violating Sweden’s Obligations under the UN Convention on the Rights of Persons with Disabilities? Laws, 5(2), 23. Available online:  https://www.mdpi.com/2075-471X/5/2/23

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Norberg, I. (2019) Life in the hands of welfare bureaucracy: the impact of austerity on disabled people in Sweden. Diss. Glasgow: University of Glasgow. Available online: http://theses.gla.ac.uk/75113/ 

Näsman, M. (2016) Konsekvenser av indragen assistansersättning. En studie om medikalisering och hur kostnader skiftar från samhället till brukaren och dess anhöriga [Consequences of cut-backs to assistance allowance. A study about medicalisation and how costs shifts from society to the service user and their relatives]. Umeå Papers in Economic History (46). Available online: http://umu.diva-portal.org/smash/record.jsf?pid=diva2%3A973776&dswid=-2780

Pettersson, A. (2015) Out and about in the Welfare State – The Right to Transport in Everyday Life for People with Disabilities in Swedish, Danish and Norwegian Law. Diss. Umeå: Umeå Forum for Studies on Law and Society. Available online: http://www.diva-portal.org/smash/record.jsf?pid=diva2%3A802039&dswid=-7001

UNESCO (2020) / Published online 6 April 2020: 2020:https://unesdoc.unesco.org/ark:/48223/pf0000373115 

WHO (2020) Disability considerations during the COVID-19 outbreak. Published online 26 March 2020: https://www.who.int/who-documents-detail/disability-considerations-during-the-covid-19-outbreak 

 Wölfel, R. et al (2020) Virological assessment of hospitalised patients with COVID-2019. Nature. Published online 1 April 2020: https://www.nature.com/articles/s41586-020-2196-x