Thinking about intellectual disability care : an intersubjective approach

Thesis (PhD)--Stellenbosch University, 2016ENGLISH ABSTRACT : Of the many challenges facing persons with intellectual impairment in South Africa, disabling care continues to confront individuals who live and work with intellectual disability. Intellectual impairment care can be conceptualised as more than the performance of tasks involving giving and receiving, but can be understood as intersubjective and relational person-making exchanges that also unfold in broader socio-political spaces. Important voices have been marginalised in discourses on intellectual disability, and, in South Africa, traditional hegemonies of knowledge dominate thinking spaces that are yet to be taken up by the opinions of intellectually impaired individuals and care workers. Since experiences of care have been rarely voiced or validated by intellectually impaired individuals themselves, making and taking care should also refer to our capacity for reflection regarding our participation in many of its practices. This study opens up possibilities for fresh perspectives on psychiatric intellectual disability care by bringing together apparently disparate fields of relational psychoanalysis and intersubjectivity on the one hand, and contemporary models of disability on the other. The research collaboratively tracks the voices of its primary speakers, and touches on problematic aspects of care by foregrounding subjective experiences of living and working with psychiatric intellectual impairment, and by exploring the making of disabled and disabling care. It then becomes possible to see how dynamics of psychiatric intellectual disability care can both complicate and be addressed by a relational and intersubjective conceptualisation of ethical care. It was the task of the researcher, as scribe of this study, to facilitate conditions in which expert voices on intellectual disability care could be raised. In such intersubjective spaces the experience of impairment is no longer simply given or bestowed, but voiced by the real experts – those who live and work with intellectual impairment in a disabling world.AFRIKAANSE OPSOMMING : Te midde van vele uitdagings wat mense met intellektuele gestremdheid in Suid-Afrika in die gesig staar, word individue wat leef en werk met intellektuele gestremdheid voortdurend met bestremmende sorg gekonfronteer. Intellektuele gestremdheidsorg kan gekonseptualiseer word as meer as die blote uitvoering van take wat die gee en neem van sorg behels, maar kan verstaan word as intersubjektiewe en relasionele persoon-skeppende uitruilings wat ook in breër sosio-politieke ruimtes ontvou. Belangrike stemme word gemarginaliseer in intellektuele gestremdheid diskoerse, en, in Suid-Afrika, word dink-ruimtes wat ingeneem moet word deur die menings van intellektueel gestremde individue en sorgwerkers steeds deur tradisionele kennishegemonieë oorheers. Sedert ervaringe van sorg selde uitgespreek of bekragtig word deur intellektueel gestremde individue hulself, hoort sorgskepping en sorgneming ook te verwys na ons kapasiteit vir besinning rakende ons aandeel in menige sorgpraktyke. Hierdie studie stel moontlikhede voor vir vars perspektiewe insake psigiatriese intellektuele gestremdheidsorg deur klaarblyklik uiteenlopende velde van relasionele intersubjektiwiteit aan die een kant, en kontemporêre modelle van gestremdheid aan die ander, te vereenselwig. Deur gesamentlik die stemme van primêre sprekers na te spoor en problematiese aspekte van sorg aan te spreek, bring hierdie navorsing subjektiewe ervaringe van leef en werk met psigiatriese intellektuele gestremdheid tot die voorgrond terwyl die skep van bestremmende sorg verken word. Dit word dan moontlik om te sien hoe die dinamiek van psigiatriese intelektuele gestremdheidsorg ‘n relasionele en intersubjektiewe konseptualisering van etiese sorg kan kompliseer, maar ook kan aanspreek. Dit was die taak van die navorser, as skrywer van die studie, om omstandighede te fasiliteer waarin deskundige intellektuele gestremdheidsorg stemme gelig kon word. In sulke intersubjektiewe ruimtes word die ervaring van gestremdheid nie meer eenvouding gegee of gegun nie, maar deur die werklike kenners uitgespreek – deur diegene wat met intellektuele gestremdheid leef en werk in ‘n bestremmende wêreld