Negalios studijų kritinis diskursas sveikatos mokslų kontekste

LT[...] Lietuvoje negalios studijų idėjos yra labai populiarios, tačiau dažnai mokslo tyrimuose tapatinamos su socialiniu negalios modeliu arba su medicinos sociologija. Turint omenyje tai, kad praktiškai visų negalios studijų krypčių, kurios vystėsi XX a. 8–9-uoju dešimtmečiais, atskaitos taškas yra socialinis negalios modelis, minėta tyrimų strategija yra priimtina. Tačiau XXI a. pastaruoju dešimtmečiu pasaulyje formuojasi nauja negalios studijų kryptis – posthumanizmo negalios studijos (angl. posthuman disability studies), kuri turi ideologinių sąsąjų su socialiniu negalios modeliu, tačiau tarpusavyje skiriasi savo metodologiniu pagrindu – subjektyvizacija ir desubjektyvizacija. Be to, posthumanizmo filosofija išauga iš stiprios kritinės šiuolaikinio humanizmo refleksijos, kurios svarbi dimensija yra negalios fenomenas. Viena pagrindinių posthumanizmo filosofijos kūrėjų R. Braidotti (2013) pažymi, kad negalia yra svarbi vertinant humanizmą, nes rodo „humanizmo nuosmukį“ (cit. pagal Goodley, Lawthom & Runswick, 2014). Tačiau apibrėžti negalios studijų ir humanizmo santykį vien tik neigiamais arba vien tik teigiamais terminais būtų sunku. [Iš Įvado]Reikšminiai žodžiai: Negalia; Fenomenas; Socialinis aspektas; Disability; Phenomen; Social aspect.

EN[...] To understand the phenomenon of disability, the use of the allegory of shadows is probably appropriate for any era. The only difference is that in the Middle Ages or the Renaissance, disability was pushed out of the field of direct human vision and thinking and was hidden by the shadows of the cave. In modern society, however, disability finds itself in the shadow of subjectivation when the process of human self-creation is overshadowed by discursive practices. The shadow of discursive practices now is no longer reminiscent of Plato's cave, but of the allegory of a scientist in H. K. Anderson's tale "The Shadow", a man who was destroyed by his own shadow. The attitude of critical thinking can play a crucial role here. This is probably since disability was not considered an object of knowledge. What was treated as a "mental illness" in the modern age was considered to be a non-essential feature of human existence in the pre-modern period. Madness was not treated as a social problem. Even until the eighteenth century, it was not recognized that individuals in these groups represent the failure of an individual or community. In the modern age, disability began to be referred to as a phenomenon related to social living conditions (Giddens, 2000, p. 202). According to C. M. Wieseler (2016), ignoring or underestimating the experience of disability is also characteristic of philosophy. Disability experiences are only referred to in order to reinforce awareness of what is normal. The field of disability studies, which grew out of a small course taught at the Open University in the United Kingdom in the 7th decade of the 20th century, has today become a very broad field of interdisciplinary research and study.Therefore, it is important to understand the scope of this field, its context, its development, and to identify its directions and origins. As D. Šėporaitytė (2011) aptly observes: "It is possible to distinguish two main general goals of disability studies. First, the aim is to move the topic of disability from its marginal positions in different disciplines and make it the main topic of an interdisciplinary research program which is theoretically and methodologically rigorous. Second, disability studies seek to counterbalance the medical perception of disability. The purpose is to show that disability is part of the diversity of human life and describes a widespread life experience, the study of which is important for society as a whole. Disability studies are closely linked to the history and program of the international disability movement. Both are like scientific instruments of political movements of the disabled" (Waldschmidt, 2006; Hermes, Köbsell, 2003; Köbsell, 2010; cited in Šėporaitytė, 2011, p. 16). In Lithuania, the ideas of disability studies are very popular, but in research they are often equated with the social model of disability or with the sociology of medicine. Given that the social model of disability is the starting point for virtually all fields of disability studies that developed in the 8th and 9th decades of the 20th century, the aforementioned research strategy is acceptable. However, in the last decade of the 21st century, a new field of disability studies has been emerging in the world, namely, posthumanism disability studies, which have ideological links with the social model of disability, but differ in their methodological basis, that is, in subjectivity and desubjectivisation.Moreover, considering that the philosophy of posthumanism grows out of a strong critical reflection on modern humanism, it becomes important to reflect on the study of disability in this respect as well. One of the main creators of the philosophy of posthumanism, R. Braidotti (2013) notes that disability is important for the evaluation of humanism because it reflects the "decline of humanism" (cited in Goodley, Lawthom & Runswick, 2014). However, it would be difficult to define the relationship between disability studies and humanism in only purely negative, or purely positive terms. Therefore, it is more broadly discussed here in this monograph. [...]. [From the publication]