What terms do people use to describe themselves and their experience?
The terms used in the area of mental health to refer to both the human distress, and the individuals treated by mental health services, are contested and political.
Language and how people are labelled is an important social justice issue, given the widespread stigma and discrimination associated with psycho-social distress. The terms used in the area of mental health to refer to both the human distress, and the individuals treated by mental health services, are contested and political.
A wide variety of words and terms, each with a political history, social connotations, and contestations, are used to describe people who have experience of mental distress or the mental health system. Differences in the meanings of these terms and how they are used varies between communities, groups, and geographical regions.
Tracing all their histories and exploring the nuances of how, when, and where these terms came into popular usage is wonderfully challenging. However, this post will only provide a snapshot introduction to the some of the commonly used terms. While we acknowledge the diversity of terminologies, in our project we use the words users, survivors, and persons with psychosocial disabilities.
People who use, or have used, the mental health services (especially in the UK) are generally referred to as service-users. It is most often used to refer to people who are engaged in efforts to reform mental health service provision. In the UK, this may be through involvement in services-led research (and in other activities). Since the 1980’s on many occasions user-researchers have succeeded in obtaining far more control, sometimes total control, over the entire research process. This form of research is termed ‘user-led’ research or survivor research.
‘Survivor’ is another term used to refer to themselves or their work by individuals who describe their engagement with mental distress and mental health systems as traumatic experiences that they have survived. In general, it is a more politicized term than service user. Survivor is also a contested term and sometimes it is unclear if people refer to themselves as having survived mental distress or mental health service use or both.
Persons with psychosocial disabilities
Both user and survivor imply the existence of a mental health system, however in many parts of the ‘Global South’ psychiatric services do not exist and bio-medical models are not as pervasive, and the term ‘persons with psychosocial disabilities’ is preferred. It is also the term used within the human rights inspired United Nations Convention on the Rights of Persons with Disabilities (CRPD) which frames much of the critical discussion and advocacy around mental health.
A very commonly used term in some parts of the Global North (particularly USA, Canada, Australia, and New Zealand) is mental health ‘consumer’ which developed from notions of marketization of health care. In the Global South, the term ‘consumer’ is sometimes used but is often not as individualistic, rather, it can also extend to families or carers.
‘Peer’, is often used to refer to people who have experienced psycho-social distress/ mental health problems, where they are sharing their experience of what helped them with others [e.g. ‘peer support’ ‘peer research’]. For many communities, especially marginalised communities, a ‘peer’ is someone who shares not just mental health experiences but also experiences related to race, gender, culture, faith, sexual orientation, age group, etc.
This term is frequently used to refer to people who are employed to work as a peer within the mental health services or NGOs in a specialized role, e.g. peer-advocate and peer-support worker, providing support to other service-users. Some organisations are increasingly using the term ‘peer researcher’ for researchers employed for their personal experience of mental distress as well as for their research skills.
Expert by experience / People with lived experience
Another term adopted by people is ‘expert by experience’ and the closely related term ‘people with lived experience’ which is used to refer to people who have experienced mental distress and/or mental health systems and use their experience and knowledge in activities such as research, policy, and activism.
Newer terms have come from Canada and elsewhere and are growing in usage in some sections of the community, especially those involved with or interested in ‘Mad Studies’. The word ‘mad’ was also used in the context of Mad Pride in the 1990s. In this context, the term ‘mad’ is used in an attempt to reclaim a word that is derogatory in most contexts and instigate conversation about the political and social contexts within which ‘madness’ is framed.
This is not a complete or exhaustive list, even within the English language. Each and every term discussed above is contested and rejected by some sections of the broad community of people affected by experiences of mental health difficulties. Furthermore, these terms are not mutually exclusive, and are often used in combination such as ‘c/s/x’ (Consumer/Survivor/Ex-patient), particularly in North America.
The reasons why certain terms are embraced may be strategic—to gain access to international platforms (especially for organisations in the Global South who have often been excluded from such spaces), to foster cross-disability alliances, to sustain support and funding, or simply to find the closest translation from local languages.
It is pertinent to acknowledge the silencing of non-normative voices within the movement and remember that these terms and words may not resonate with, or hold different meanings for, people with experiences of marginalisation. In EURIKHA, we endeavour to engage with and privilege those voices and knowledges which are often excluded from the mainstream. Questions of intersecting identities, multiple marginalisations, privileges and power afforded by race, gender, region, language are deeply relevant. Clearly, these short descriptions are unable to do justice to the contexts in which these terms are used, and we hope to explore these issues in more depth in future posts.
EURIKHA aspires to uncover and understand the language people use to describe their experiences and their work. We continually seek to expand our vocabulary and understand its relevance to local contexts, and we invite you to use the comments section.
Beresford, P., ‘Service user’: regressive or liberatory terminology?Disability & Society, 2005.20(4): p. 469-477.
Davar BV. (2012) Legal frameworks for and against people with psychosocial disabilities. Economic & Political Weekly47: 123.
Robb, A.-M., History of PANUSP, African User and Survivor Involvement and Human Rights
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