Orientation Introduction

Personal assistance is a concept that comes out of the disabled people’s movement. Rather than being dependent on family members, or care workers in an institution, disabled people can live independently in the community, supported by workers who they pay directly and control.

“We need to be clear what we mean by independence. We are not talking about being able to do everything for yourself. Neither does it imply cutting oneself off from the assistance of others. For what matters is not whether you do something with or without the help of others, but that it gets done under your direction. Being independent simply means that you have some control over your life, and that you do not live by the routine of others.”

(Simon Brisenden, Independent living pioneer)

Personal assistance avoids dependency. Instead of having to feel grateful to other people for their kindness, disabled people are paying for their service. It is a contractual exchange. The worker gets their wages; the disabled person gets tasks done which they could not do for themselves. Neither party loses out.

As a result, personal assistance is empowering. The disabled person can decide who supports them, at what times, and in what ways. They are in control. Personal assistance is also flexible. It can be different for different people, and on different days.

A personal assistant is different from a carer or a health professional. They answer to their employer – the disabled person – and do what they wish.

Personal assistance relies on the working relationship between the disabled person, and the personal assistant. In fact, a series of working relationships, between a disabled person, and each person who works for them. Although this is a reciprocal relationship, because one person is getting paid, and the other is getting support and assistance, it is still a relationship, with all that that entails. It can entail spending many hours in each other’s company. It can entail some very intimate and personal assistance tasks.

Most human relationships are complex, whether in the family, at work, or in friendships. Human relationships involve different roles and different feelings. Misunderstandings can sometimes as a result of these different roles and different feelings. Good communication can help avoid misunderstandings.

Personal assistance has been around for forty years. But it is still unfamiliar to many people. There are no clearly established rules or roles. There is no one single agreed model for personal assistance relationships. There are several different ways of organising personal assistance. We cannot say one way works better than the others. Different people will prefer different approaches.

The basis for this training is a research project conducted at the University of East Anglia, and funded by the Economic and Social Research Council. This project involved interviews and observations. Thirty disabled people and thirty personal assistants took part in this research. By analysing what they said, the research team were able to come up with the ideas in this training course.

As well as the data from the study, this training also draws on two other resources. One is the Rough Guide to Personal Assistance, edited by Sian Vasey and illustrated by David Shenton and published by the National Centre for Independent Living. The other is the Personal Assistance Training Pack developed by Ross Cowan and Stuart Bracking.