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Words Matter

Author: Stephen Craig Coulson

Stephen Craig Coulson reflects on the words that are used in human services, and in particular as part of work at the Thistle Foundation.

We are often asked for a kind of ‘Thistle dictionary’ to explain our (hopefully) careful use of language. In truth it is sometimes easier to notice when language jars and doesn’t sound ‘person centred’ than it is to say exactly what you should say in any given situation. Above all everyone has a responsibility to always be thoughtful in their use of language when working with another person.

This little guide attempts to help. When speaking about, with or to the people we work for please consider these questions:

In any given situation how would I like to be described?

  1. Does my language reflect a genuine partnership - or imply a power imbalance?
  2. Does my language speak to a person’s gifts, strengths and assets - or focus on their deficits?
  3. Does my use of language champion a person’s citizenship – or accidentally diminish it?
  4. Do I always need to go into details - or is it OK sometimes to be ambiguous?
  5. Do I think very carefully of the handful of occasions a label might be of any use to the person?

Why words matter

Words matter – a lot. Words probably do not create reality – but they can certainly shape and influence it dramatically. Many people who are new to Thistle Foundation notice the way we use language and one former colleague even described it as ‘Thistleian’. People sometimes ask us for a ‘dictionary’ of ‘the right words to use’. However we think it goes deeper than that. As with everything we do, our language should reflect our values and wherever possible challenge the prejudice, inequality and discrimination which permeate our society.

We believe that this prejudice, inequality and discrimination are ‘socially constructed’. That means, they are created and shaped by the existing social and economic conditions, the reality of everyday life for disabled people. For example, poverty, low employment levels and scandalously poor health outcomes are matters of fact in 21st century Scotland for disabled people and those with long-term health conditions. Various ‘narratives’ or stories then develop out of these conditions which essentially explain or even justify aspects of the way things are.

These narratives have emerged and changed over the past couple of hundred years but most, although expressed in more modern ways, are very persistent. Those with fragile mental health can be seen as ‘social menaces’ to be feared, avoided or locked away. Disabled people, older people and those with poor mental health can be seen as ‘economic burdens’ on the state and ‘taxpayers’. Many people with learning difficulties are still perceived as ‘eternal children’ with ‘mental ages of 7 or 8’ when they are manifestly adults (little wonder people from these communities struggle to find opportunities to have healthy sex lives and the relationships they choose?) Many of the current debates around austerity question the ability of one of the richest economies in the world to have the resources to properly support our most marginalised fellow citizens and debates about euthanasia and whether ‘lives are worth living’ are commonplace. How often are ‘these poor folks’ seen as ‘objects of charity’?

All these narratives and more were identified by Wolf Wolfensberger half a century ago [in his writings about the principles of Normalisation and Social Role Valorisation]. They have seeped into our everyday language and practice and shaped the way in which we have designed and delivered support to people. Thistle wants to challenge that alongside the people we support. Beth Mount explains this as follows:

  • If we truly work with citizens and wish to develop that alternative narrative (or story) we have to work hard to embody that in what we do with people: supporting people to achieve the outcomes and the life they genuinely want to live. 
  • However, we also need to embody that in how we do it: by working genuinely with fellow citizens as equal partners. 
  • Finally, we have to be clear why we are doing it: because we are angry about injustice and want to live in a world that works for everyone.

For all these reasons the words we use need to be coherent and congruent with these aspirations – in other words they need to match our values and aspirations for our world and our fellow citizens.

Here are a few tips on how to learn to speak ‘Thistle’ and and to encourage equality, inclusion and citizenship for all:

How to speak Thistleian
Who we work withPatient, client, problem, ‘them’Service user, user of servicesPerson we support, work with, work for, work alongsideFred, Mary, AzimAlthough Service User is popular in social care – it’s still a label
Who we areHelper, buddy, carerSupport worker, social care workerPersonal AssistantI work with, for or alongside Fred, Mary, Azim‘Assisting’ gives a very different message to the community than ‘caring’
What we doI help/look after/am in charge of/care forI supportI work alongside, with, for...Fred, Mary, Azim‘Care for’ means something different than ‘care about’. People are usually the experts in their lives
Discussing disability & long-term conditionsS/he is: epileptic, autistic, disabled, learning disabled, mentally ill, demented etc. of s/he suffers from …S/he is a person with epilepsy, autism spectrum disorder, a disability, a learning disability, a mental health problem, dementiaS/he is the person I work for, alongside, withFred, Mary and Azim are citizens, community members, neighbours, pals, partners, fans, brothers and sisters, parents, constituents etc. People should not be defined by their impairment. ‘Suffering’ casts people as victims and objects of pity.

Important footnote: the Disabled Peoples’ Movement uses the words ‘disabled people’ to describe themselves rather than ‘people with a disability’. People themselves are not inherently ‘disabled’, rather in line with the Social Model of Disability; they argue that people are ‘disabled’ by the barriers which exist in society. However, People First the leading self-advocacy organisation prefers the expression ‘people with a learning difficulty’ to describe the people they work with. Currently we describe those we work with in this way: ‘Thistle works alongside disabled people and people with long-term conditions’.

The publisher is The Centre for Welfare Reform.

Words Matter © Stephen Craig Coulson 2016.

All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.