Perception of persons with ataxia

  • Luba Jakubowska Department of Promotion of Health, Faculty of Health Sciences, Wroclaw Medical University Barta 5, 51-618 Wrocław, Poland
  • Magdalena Kazimierska- Zając Department of Disorders of the Nervous System, Faculty of Health Sciences, Wrocław Medical University
  • Joanna Rosińczuk Department of Disorders of the Nervous System, Faculty of Health Sciences, Wrocław Medical University
Keywords: Spinocerebellar ataxias (SCA), self-presentation, perception of persons with ataxia, image, neurological speech disorders

Abstract

Aim. The aim of the paper is to present the reasons of the forming of erroneous, unfavourable perception of persons with spinocerebellar ataxia.

Concept. Spinocerebellar ataxias (SCA) are a group of degenerative disorders leading to damage of the cerebellum and its connections (Klockgether, Paulson, 2011). The following are distinguished among the neurological speech difficulties present in persons with SCA: dysphagia (difficulties with swallowing leading to problems with eating), speech disorders, and mental disorders. Each of these groups of disorders may lead to the stigmatisation of persons with SCA. Such persons might be seen as sloppy and helpless, and the specificity of speech impairments and uncoordinated movements as well as their irregular gait may cause these persons to be perceived as inebriated. Such presumptions lead to difficulties in social functioning and may be the cause of discrimination, including the denial of help.

Conclusion: What is helpful in combating prejudice is, first and foremost, the dissemination of knowledge about the condition, including launching social campaigns presenting the labelled symptoms of SCA.

What is more, work with the patient ought to be focused on the development of coping strategies in the social environment rather than alleviating physical difficulties exclusively.

Author Biographies

Luba Jakubowska, Department of Promotion of Health, Faculty of Health Sciences, Wroclaw Medical University Barta 5, 51-618 Wrocław, Poland

 Luba Jakubowska is a psychologist and a pedagogue. She specialises in methodology of research in social sciences. In the recent years she has devoted particular attention to research with the use of the Internet. She is the founder and the editor of the “e-methodology” journal. Furthermore, she is a member of editorial boards of 3 scientific journals, including 2 of international impact.

The subjects to which L. Jakubowska pays particular attention are identity and image, and in the recent years she has conducted research into the significance of computer-mediated communication in self-presentation.

Luba Jakubowska conducts methodology workshops, also in organisations outside Poland (Paris, Lviv). What is more, L. Jakubowska is the author of nearly 30 academic papers, coordinator and participant of educational and research projects, and the organiser and co-organiser of numerous academic conferences. She is the main organiser of the international academic conference “e-methodology”, which will held for the fourth time in 2018.

Magdalena Kazimierska- Zając, Department of Disorders of the Nervous System, Faculty of Health Sciences, Wrocław Medical University

Holder of a doctorate degree in health sciences, Magdalena Kazimierska-Zając is a clinical speech therapist and an employee of Wrocław Medical University. She is interested in speech impairments in neurological diseases and the use of new technologies in therapy and rehabilitation.

Joanna Rosińczuk, Department of Disorders of the Nervous System, Faculty of Health Sciences, Wrocław Medical University

Joanna Rosińczuk – nurse, holder of a doctorate degree in medical sciences in medicine, habilitated doctor of health sciences, full professor. Academic teacher, specialist in neurological nursing and preventive nursing. Deacon of the Faculty of Health Sciences of Wrocław Medical University, Vice-President of Prevention and Occupational Hazard in Healthcare Section of the International Social Security Association (ISSA).

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Published
2018-06-27
How to Cite
Jakubowska, L., Kazimierska- Zając, M., & Rosińczuk, J. (2018). Perception of persons with ataxia. Journal of Education Culture and Society, 9(1), 82-88. https://doi.org/https://doi.org/10.15503/jecs20181.82.88