The working title of my PhD is “Personal Assistance: The Challenge of Autonomy”. I am investigating personal assistance for disabled people as a form of employment and as a relationship between personal assistant and disabled employer, in the context of critiques of wage labour from both the Disabled People’s Movement in particular (as constitutive of disabled people’s oppression through their exclusion from it), and anti-capitalist movements more broadly (as an exploitative relationship between employer and worker that alienates people from their labour and its products).
The central focus of my research is the tension between the autonomy that employing personal assistants gives disabled people – as campaigned for by the Disabled People’s Movement under the banner of “independent living” – and the denial of autonomy for workers that is integral to the whole concept of waged employment.
The main research method I am using for this is qualitative, semi-structured interviewing – I aim to interview both disabled employers and personal assistants about their experiences of and opinions on personal assistance as a form of work and an employer-employee relationship. Alongside this I intend to analyse autobiographical accounts of employing and/or working as P.A.s within Disability Studies and Disabled People’s Movement activist literature.
With my interviews I hope to find answers to the following questions:
- How is the work of personal assistance understood/conceptualised by both those who ‘give’ and ‘receive’ it?
- What, if anything, meaningfully distinguishes P.A. work from other forms of heteronomous labour (i.e. work done for a ‘boss’ in exchange for a wage)?
- What advantages and disadvantages does direct employment of P.A.s have over other possible models of assistance, for disabled people and for P.A.s as workers?
- What are the power relations between disabled people who need personal assistance and those who assist them? (and are these power relations fundamentally different depending on whether those who assist are paid a wage or not?)
- Does the direct employment model of personal assistance actually liberate disabled people in the way it is claimed to (or in the way that the Disabled People’s Movement wanted it to)?
I also aim, by analysing the data from my interviews together with relevant literature, to address the following, more theoretically fundamental questions:
- How can disabled people get the assistance they need with everyday living without denying the autonomy of either disabled people or those whose role it is to provide them with assistance?
- How could disabled people who need personal assistance be given control over their daily lives in a society that was not based on capitalist concepts of waged labour and exchange value?
If any of this interests you or you would like to discuss these topics with me, please contact me!