employer-employee face in meetings with professionals, even where they adopted a friendship stance in other settings. Trusted P.A.s often colluded with this.
The General Public Despite some instances where people had been helpful and friendly, all employers reported instances of being abused and insulted by strangers.
Strangers did not understand what personal assistance was, and could not be relied upon to support the idea of independent living. More importantly, an intimation that the P.A. was working led to an assumption that the employer was a receiver of ‘care’, implying lack of competence and ability.
‘They will think that I need a carer with me - that I need care.’ (employer)
Also problematic for employers was the notion that a personal assistant might be a servant, something that is not generally acceptable to many due to class connotations. Employers presented P.A.s as friends or said nothing (leaving others to draw their own conclusions) to get around these problems.
Conversely, personal assistants preferred that others were told that they were in fact employed. If this was not done, they explained to their families and friends when the employer was not present. One exception, a male P.A., preferred to be identified as a friend. Several participants noted the stigma attached to men working as personal assistants and being identified as ‘working in care’.
Employers could not avoid professionals or the general public, and these encounters demanded very different portrayals of employer-personal assistance relationships. This questions the common notion that relationships ought to take a certain form. Participants often had not much choice in the matter, if they were to be treated reasonably well in each situation. Public situations often called for relationships that were different from those in the home.
Employing personal assistants is highly complex. Home and work life overlap in inextricable ways and employers, family members, friends and personal assistants
make sense of these circumstances by balancing a myriad of considerations. Employers developed competence over time. Trying out alternative ways of ‘doing’ personal assistance was an important part of the process.
Marfisi, C. (2002). Personally Speaking: a critical reflection of factors which blur the original vision of personal assistance services. Disability Studies Quarterly, 22(1), 25-31. Vasey, S. (1996). The Experience of Care. In G. Hales (Ed.), Beyond Disability: towards an enabling society. London: Sage.
About the Study
50 people took part. In 2003-2004, 30 disabled employers living in north west and central England were interviewed, corresponding to 9 local authority areas. Employers’ ages ranged from 24 to 77: 19 women and 11 men. 4 identified as from a minority ethnic group. 10 employers each nominated a family member or friend and a personal assistant, who were subsequently interviewed. Of the personal assistants, 9 women and 1 man were interviewed. Ages ranged from 25-41 years. Family and friends were 3 mothers, 1 son, 2 daughters, 2 partners and 2 friends. Ages ranged from 12 – 63 years.
Thanks are due to participants who freely gave their valuable time. Financial support from the Economic and Social Research Council is acknowledged with thanks. The School of Sociology and Social Policy. funded the publication of these findings and Dr. Geof Mercer and Professor Jennifer Mason gave guidance on the study. Their assistance is warmly acknowledged.
A full copy of the thesis is available from the UK Disability Archive http://www.leeds.ac.uk/disability- studies/archiveuk/ For alternative accessible formats, contact Colin Barnes: C.Barnes@Leeds.ac.uk Further information about the study from Sarah Woodin: spl9slw@Leeds.ac.uk School of Sociology and Social Policy, University of Leeds, Leeds, LS2 9JT. Tel: 0113 343 4407