Image: Mother hugging her daughter

Informal Care in the Context of Intellectual Disability

A Qualitative Sociological Study
An exciting opportunity for a commencing PhD student to join a dynamic team of sociologists to undertake qualitative research at the Sydney Centre for Healthy Societies in the School of Social and Political Sciences.

Disability is often viewed in narrow biological terms, but it in fact has physiological, social, cultural and political dimensions. Disability, in all its forms, raises questions about morality, ethics and value in society. This is evident in the evolving and contested normative scene that frames some people and their bodies as ‘normal’ and ‘able’, while others are defined as disabled, in opposition to the ‘norm’. It is also apparent in the political and economic priorities that overlay this field – including the valorisation of independence and (particular forms of) ‘productivity’ under neoliberalism, and the associated marginalisation of those who are unable to ‘contribute’ in the right ways. These social, cultural and political dynamics interplay with and inform formalised policies and structures that aim to ‘address’ disability, including Australia’s National Disability Insurance Scheme (NDIS). The place of informal care in this scene is often overlooked in both policy and analyses therein, leaving a vacuum in scholarly knowledge.

This study is therefore concerned with care (broadly conceived) in the lives of people with intellectual disabilities, for whom barriers to accessing care at the societal level are often particularly pronounced relative to people with other forms of disability. The study’s primarily focus is on the ‘backstage’ of informal caring relations within the family, and how these relations are variously shaped, necessitated, bolstered and/or undermined by broader systems of social support or withholding. More specifically, the study will explore the (in)adequacy and (in)accessibility of care at the societal level – most notably via formal supports like the NDIS, but also through more defuse dynamics of stigmatisation and social marginalisation – and interrogate the implications of this (dearth of) care for people with intellectual disabilities and their informal carers.

A key focus of the study is the interplay between social infrastructures of care (such as the NDIS) and the care work that is undertaken ‘privately’ by informal carers within the home. Informal care, as understood in this study, is at once deeply personal and fundamentally political. Informal care often occurs within the family, but it is underpinned by and dependent on a whole infrastructure of state support which, if not present, can produce and reproduce vulnerability and precarity. Equally, carers often find themselves responsible for work that has fallen to them because of gaps in formal support. Under the neoliberal welfare state, care responsibilities (including the work of accessing state support) are pushed onto private individuals in ways that undermine the agency and independence of care recipients. The paradoxical logic of the contemporary neoliberal welfare state thus inflects private caring relations – with implications for the wellbeing of both people with intellectual disabilities and their carers.

The successful candidate will engage with and draw on a rich body of scholarship to explore and theorise (failures of) care in the lives of people with intellectual disabilities. Key literatures will include, but are not limited to, critical sociological research on care work, disability, social stigma, vulnerability, and the neoliberal welfare state. At an empirical level, the successful candidate will collect data from people with intellectual disabilities and their informal carers using a variety of novel qualitative methods. These might include digital diaries, where carers document the everyday work of supporting someone with an intellectual disability, including time spent accessing state supports; ‘digital walkthrough’ interviews, where carers orient the candidate to welfare bureaucracies and locate functional (in)accessibilities for the people they support; and in-depth interviews, including interviews using visual methods to elicit information directly from people with intellectual disabilities. These interlocking methods will allow the candidate to assemble a nuanced picture of participants’ lives, which at once recognises the considerable unpaid work undertaken by informal carers in the shadow of the neoliberal welfare state, identifies failures of care at the societal level, and centres the perspectives and expertise of people with intellectual disabilities.

This study represents a unique and exciting opportunity for a commencing PhD study to join a dynamic team of sociologists who are undertaking important, high-impact research for the social good.

The study forms part of a broader program of research – led by Professor Alex Broom and Dr Michelle Peterie within the Sydney Centre for Healthy Societies – concerning care and social neglect in contemporary Australia. The successful candidate will be supervised by Professor Broom and Dr Peterie and will receive mentoring and training to support their work on the project. The successful candidate will also be supported to build valuable professional networks both within and outside of academia.

The successful candidate will be based in Sydney (Camperdown Campus).

Applicants are invited to submit a proposal for PhD research that aligns directly to this project.

Prospective candidates may qualify for direct entry into the PhD program if their research proposal (see above) is accepted and they satisfy at least one of the criteria listed below.

  • Bachelor's degree with first- or second-class honours in an appropriate area of study that includes a research thesis based on primary data not literature review
  • Master's degree by research in an appropriate area of study that includes a research thesis that draws on primary data
  • Master's degree by coursework, with a research thesis or dissertation of 12,000–15,000 words that draws on primary data not literature review, with a grade-point average of at least 80 per cent in the degree.
  • Demonstrated appropriate professional experience and alternative qualifications in the field of study.

For more information regarding applying for a PhD refer to the course details for Doctor of Philosophy (Arts and Social Sciences).

Please also refer to guidelines for preparing a research proposal.

A number of scholarships are available to support your studies.

Australian Government RTP Scholarship (Domestic)
Australian Government RTP Scholarship (International)
University of Sydney International Strategic Scholarship

These scholarships will provide a stipend allowance of $35,629 per annum for up to 3.5 years. Successful international students will also receive a tuition fee scholarship for up to 3.5 years.

For other scholarship opportunities refer to Faculty of Arts and Social Sciences Research Scholarships (Domestic) or Faculty of Arts and Social Sciences Research Scholarships (International).

For further details about the PhD project contact Dr Michelle Peterie at michelle.peterie@sydney.edu.au.