Counter-Configurations of Disability: The ‘Inhabitable’ Worlds of People with Down’s Syndrome
Cardiff University, United Kingdom
There is a growing presence of positive disability imaginaries being enacted through popular media and across widely distributed networks of people with shared experiences of disability. This proliferation of more optimistic and complex representations which celebrate ‘diversity’ and practices of self-making, community-building, and ‘revolt’ (Tyler 2013) may signal an important cultural shift in how people feel about, and experience, possibilities for reproducing a disabled child. Yet little research has addressed how parents of children with disability produce, experience, and/or resist configurations seemingly designed to enact a more positive, visible, and rounded portrayal of disability.
Drawing upon theoretical contributions from sociology, disability studies, cultural studies, and STS, and initial findings of a UK study (interviews with parents of children with Down’s syndrome and a textual analysis of cultural materials), I explore the formulation of new imaginaries of ‘difference’ which depart from narratives of disability as tragic and pitiful, and promote notions of dignity and worth. Moreover, I consider how positive imaginaries of disability in cultural outlets (e.g. TV/film, newspapers, blogs/social networks) chime with, contradict, or complicate configurations of disability as an unvalued bodily state in reproductive biomedicine and UK welfare rhetoric and practices. I also unpack how parents navigate representations of current/imagined futures which, arguably, promote ‘normalisation’ practices and normative subject positions. In so doing, this paper shows how ‘disability worlds’ (Ginsburg and Rapp 2015) are made ‘inhabitable’ and/or ‘uninhabitable’ (Freidner 2015) at different moments.
Barriers in Social Relationships and Social Participation: the Experiences of Women with Disability
1University of Milan, Italy; 2University of Turin, Italy
Aim: The aim of this study was to explore barriers in social relationships and social participation of women across and within three types of disability: sensory (deafness), physical (inability to move lower limbs), and mental (psychotic disorder) disability.
Methods: Qualitative semi-structured interviews were conducted with 30 women – 10 per type of disability – aged 22-44, living in the metropolitan area of Milan (Italy), and having relative autonomy. Data were analysed using template analysis technique of thematic analysis.
Main findings: According to the findings, women with disability face a variety of barriers related to their social and physical environment. Participants with mental disability reported that they have faced prejudice, discrimination, stigmatisation, and/or lack of empathy towards them from other people of the wider population. All participants with physical disability reported barriers related to numerous hindrances of the physical environment, while most of them had also experienced prejudice and mentality barriers towards them from persons of the wider population. Participants with sensory disability reported mostly barriers related to lack of resources for communication with people of the general population and having limited opportunities for employment compared to hearing persons. Additionally, from comparison across types of disability, various common patterns emerged, as well as that participants with mental disability had the lowest level of social participation, whereas women with physical disability the highest.
Conclusion: It appears compelling to focus on the exploration of aspects of the social relationships and social participation of persons with disability, as the barriers they face in relation to these aspects are numerous and multi-faceted. The biopsychosocial model of health and disability could contribute towards the goal of full social inclusion.
Protests of Persons With Disabilities, Their Parents and Care Providers in Poland - Analysis of Press Releases
Collegium Civitas, Poland
The aim of this paper is to describe the media image of protests (in 2014 and 2018) that caregivers and parents of persons with disabilities’ held in the Polish Parliament. This protest was spectacular and controversial as protesters (including children and adults with disabilities) were literally living in the building. Their aim was to pay attention to their difficult situation and to obtain higher social benefits. The second protest (2018) has inspired a theatre drama “Revolution that has never happened” performed mainly by actors with Down’s Syndrome.
A sample of more than 120 press releases (main national printed media) was taken and analyzed using qualitative content analysis. Main areas of interests were: the way protesters were presented in the media, the media presentations of their motivations and their demands.
The analysis shows that parents insisted on a higher social benefit. Surprisingly, the issues of work-life balance, reconciliation of professional and private roles were not discussed. This means that caregivers (mothers) fulfill traditional social roles and expectations.
The protest was breaking a taboo. The border between public and private was blurred - care giving practices usually considered private were publically presented. This action confronted public opinion and politicians with everyday life of a family with a member with disability. It has also become political. The second protest gained more attention mainly because of the political situation in Poland. The analysis provokes questions about protests consequences – is it the beginning of an emancipation social movement or just an occasional action?
Studying in the Narratives of Disabled Students
University of Warsaw, Poland
The presentation will diuscuss the problem of disabled persons performing the social role of a student. I will analyse narratives as identity work. Narratives are framed in diverse contexts: trajectories of suffering in the meaning of Fritz Schutze, trajectories of identity and protective cocoon in the meaning of Anthony Giddens as well as transformations of identity including turning points and passing from one status to another as envisaged by Anselm L. Strauss. Subsequently, they are confronted with the concept of social personalities set forth by Florian Znaniecki in his book "Current people and Civilisation of the Future".
I will show that a combination of Znaniecki's "typifying" conception with individualistic concepts of biographical method may be particulary fruitful in the research of unusual situations, one of which may be a disabled person performing the role of a student.
The starting point is a report from research conducted on a sample of 60 persons - university graduates who in interviews had recalled their academic years. On this base four interviews are presented, which exemplify the types of disabled students' "social personality", constructed according to Max Weber's conception of "ideal type". The types are distinguished as a result of analysis of all 60 interviews: "big child", "mentor", "self-reliant"and "hyperactive".