RESEARCH PAPER
Unknown social aspects of disability – on the example of patients with MS
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1
Department of Culture and Communication Research, Maria Curie-Skłodowska University, Lublin, Poland
2
Department and Clinic of Neurology, Medical University, Lublin, Poland
These authors had equal contribution to this work
Corresponding author
Edyta Barańska
Department of Culture and Communication Research, University of Maria Curie-Skłodowska,
Department of Culture and Communication Research, M. Curie-Skłodowskiej 4, 20-031, Lublin, Poland
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ABSTRACT
Introduction and objective:
In the context of disability, much is said about the problem of disability and social exclusion. One such group of disabled people are those suffering from MS who experience a completely different form of social exclusion.The aim of the article is to show what form it takes and why this form of exclusion is so painful for the sufferers.
Material and methods:
A qualitative method was used to conduct the study, specifically a free-form interview, or a narrative interview. Seven interviews were conducted with MS patients who had been ill for at least seven years.
Results:
MS and the resulting disability present not only a medical issue for those affected, but also impacts their ability to function in society. Respondents indicate the difficulties they face, including social rejection and exclusion, which they describe as different and more distressing than that experienced by individuals with disabilities other than MS. People with MS often report that they are not perceived as having a disability because their disability is frequently invisible, and are sometimes accused of faking it. They are forced to constantly explain and justify their symptoms. To avoid unpleasant situations, they often feel compelled to deny that they have a disability, even though tit exists.
Conclusions:
The conclusion is that the hidden disability of discredited people in this case causes social distaste. This is because, in the social context, these people are not seen as ‘disabled’ but as ‘strange’. As a result, this leads to the phenomenon of hiding an (already) ‘hidden’/invisible disability. The problem for these people, then, is not being disabled, but precisely the lack of social perception of them as disabled – the lack of social recognition of them as disabled.
REFERENCES (24)
1.
Thompson AJ, Banwell BL, Barkhof F, et al. Diagnosis of multiple sclerosis: 2017 revisions of the McDonald criteria. Lancet Neurol. 2018;17:162–173.
https://doi.org/10.1016/S1474-....
3.
Koch-Henriksen N, Magyari M. Apparent changes in the epidemiology and severity of multiple sclerosis. Nat Rev Neurol. 2021;17:676–688.
https://doi.org/10.1038/s41582....
4.
Walton C, King R, Rechtman L, et al. Rising prevalence of multiple sclerosis worldwide: Insights from the Atlas of MS, third edition. Mult Scler. 2020;26:1816–1821.
https://doi.org/10.1177/135245....
5.
Lynch S, Baker S, Nashatizadeh M, et al. Disability measurement in Multiple Sclerosis patients 55 years and older: What is the Expanded Disability Status Scale really telling clinicians? Mult Scler Relat Disord. 2021 Apr;49:102724.
https://doi.org/10.1016/j.msar....
7.
Ibrahim R, Mahmood H, et al. Exploring Quality of Life in Patients with Multiple Sclerosis: A Multidimensional Perspective. MJN. 2024;15(3):99–105.
https://doi.org/10.31674/mjn.2....
9.
Oliver M. The Social Model of Disability, In: Cree VE, McCulloch T, editors. Social Work. Routledge; 2023. p. 137–140.
10.
Shakespear T, Watson N. Frameworks, Models, Theories, and Experiences for Understanding Disabilty. In: Brown RL, Maroto M, Pettinicchio D, editors. The Oxford Handbook of the Sociology of Disability. New York: Oxford University Press; 2023. p. 17–37.
11.
Racław M, Szawarska D. Ukryte/niewidoczne niepełnosprawności a polityka tożsamości i etykietowania w życiu codziennym. (Hidden/Invisible disabilities and the politics of identity and labeling in everyday life). Przegląd Socjologii Jakościowej. 2018;3:30–46.
https://doi.org/10.18778/1733-....
12.
Hendry G, Wilson C, et al. “I Just Stay in the House So I Don’t Need to Explain”: A Qualitative Investigation of Persons with Invisible Disabilities. Disabil. 2022;2(1):145–163.
https://doi.org/10.3390/disabi....
15.
Burke K, Wess R. Rhetoric, Subjectivity, Postmodernism. New York, USA: Cambridge University Press; 1996.
16.
Goffman E. Stigma. Notes on the Management of Spoiled Identity, Prentice-Hall, Inc. Englewood Cliffs, USA; 1963. p. 2–20, 19–31, 41–42, 126–139.
17.
Wawerska-Juśko M, Rejdak K. Social Stigma of Patiens Suffering from COVID-19. Challenges for Health Care System. Healthcare. 2022;10:1–9.
https://doi.org/10.3390/health....
18.
Machili I, Angouri J. Hope it’s useful’: Negotiating first and second order accounts in discourse-based interviews. In: Pope EM, Brandão C, Bower K, Verdugo-Castro S, editors. Qualitative Research: Practices and Challenges. Ludomedia: Aveiro-Portugal: 2023;16.
https://doi.org/10.36367/ntqr.....
21.
Grytten N, Maseide P. ‘When I am together with them I feel more ill.’ The stigma of multiple sclerosis experienced in social relationships. Chronic Illn. 2006;2:195–208.
https://doi.org/10.1177/174239....
22.
Mówią o mnie oszustka – czym jest niepełnosprawność ukryta? (They call me a cheat – what is hidden disability?).
https://pytanienasniadanie.tvp.... (access: 29.04.24).
23.
Grothe L, Grothe M, Wingert J, et al. Stigma in Multiple Sclerosis: The Important Role of Sense of Coherence and Its Relation to Quality of Life. Int J Behav Med. 2022;29:517–523.
https://doi.org/10.1007/s12529....
24.
Yvonne LB, Franks A, Lindsay S, et al. The invisible work of co-creating disability access in work integrated learning. Adv Health Sci Educ. 2023;28:1391–1408.
https://doi.org/10.1007/s10459....