By Jak Jamieson-Gray & Sofie Meier, Marketing Assistants, Safe As Houses
People in care settings have care needs for a variety of reasons. Some have learning or physical disabilities, whilst others struggle with aspects of their daily life due to autism, mental health conditions, or are in the care system due to adversity experienced early in life. This, of course, is to name but a few. Unfortunately, individuals in care aren’t always met with compassion and an open mind, but very often face stigmatisation, discrimination, and inaccurate stereotypes instead.
How we use language matters; especially when talking about people in care settings. The words we use can be respectful, compassionate, and empowering. However, they can also be de-humanising, othering, disrespectful and even offensive; language use can perpetuate stigma as well as it can do the opposite. (Swaffer, 2015)
As a society, we believe that we have an obligation to be open-minded and reflective of our use of language, especially regarding the care sector where people generally aren’t met with the empathy, support, or the kindness every person deserves and needs.
How we use language can have a huge impact on a person: It can influence the way they view themselves and the world they live in, as well as how they are perceived by others.
Why is the way we use language important (especially in care settings)?
Words come with different connotations that can be neutral, positive, or negative. They can trigger associations with harmful stereotypes of e.g., aggressive, or volatile behaviour by autistic individuals that don't reflect the reality of the conditions and disabilities people live with or the difficulty they can experience with things often taken for granted, such as being able to communicate with others. It is problematic how stigma and stereotypes associated with certain conditions and disabilities can dehumanise those individuals and trigger a 'us vs them' way of thinking (i.e., othering). (Swaffer, 2015)
Everyone is susceptible to this way of thinking, even family members and medical or care professionals. Individuals in care settings, e.g., autistic individuals with care needs, are often discriminated against by professionals and described as 'aggressive', or as displaying 'challenging behaviour'. This is rather than having professionals lay out the context and establish an understanding of the difficulties autism can cause individuals and that 'challenging behaviour' is the result of autistic individuals struggling to handle these difficulties, e.g., delayed social emotional development causing someone with autism difficulties navigating social situations. (Jacob-Thomson, 2021)
The problem here is that harmful stereotypes and stigma in the minds of professionals can prevent a person-centred (health) care approach and instead be disempowering, othering, and dehumanising for the individual.
Children in the care system, for example, are often described in stigmatising, dehumanising, and othering language from a young age which in many cases not only negatively influences a child’s or young person's perception of themselves, but also their view of the world. (Jacob-Thomson, 2021)
Research into the issue even shows that stigma has a harmful impact on people's willingness to seek (medical) help as it installs feelings of shame. (Swaffer, 2015)
What impact does language have on stigma
When we use certain language or terminology we trigger the cultural associations that are tied to it. For example, using the term 'suffer from' or 'victim' rather than ‘living with’ when talking about people with disabilities or medical conditions, portrays them as helpless and thereby reinforces harmful stereotypes and stigma.
Guidance by the UK Government about inclusive language use surrounding disability supports this: It is recommended to “Avoid phrases like ‘suffers from’ which suggest discomfort, constant pain, and a sense of hopelessness.” (gov.uk, 2022).
Another example is the word ‘patient’. It originates from the Latin word ‘patior’, which means someone who is suffering. It’s safe to say, not everyone within the care sector is suffering and portraying individuals as victims suffering from their condition or disability can not only be quite disempowering for them but is also inaccurate.
To provide another example, let’s go back to 2010 where Joe McCarthy’s wife was diagnosed with multiple sclerosis. Mr McCarthy had made his own experience with the term ‘patient’, explaining he felt “a cognitive dissonance between the word "patient" and “a need for a new term that better reflects the participatory nature of our relationships with medical experts.” (McCarthy, 2010).
The term ‘patient’ has been debated for quite some time. An article from 1999 in the National Library of Medicine journal posed the question, “Do we need a new word for patient?” (Tallis, 1999), which gained a split response of whether we do or do not. Over 20 years later, however, the term is still being used widely.
The current situation of language use in Care
The language and terminology used when referring to people in care is gradually evolving to become more person-centred. Historically, common language used to speak about, e.g., dementia or autism is established by healthcare professionals and academics, not by the people with lived experience. Currently, the terminology used unfortunately perpetuates stigma, induces shame, is disempowering, and is often not accepted by the people living with these conditions.
Conscious language use on the other hand allows us to influence others by painting a more inclusive and compassionate picture of the individuals in care settings. The UK Government’s guidance on inclusive language surrounding disability, for example, also comments on the inaccurate use of the word ‘disabled’ when referring to people with disabilities: “The word ‘disabled’ is a description not a group of people. Use ‘disabled people’ not ‘the disabled’ as the collective term.” (gov.uk, 2022).
How we can all be part of making and embracing change
Language use and especially jargon and abbreviations used by professionals is ingrained and highly habitual. The process of change is therefore a slow one that requires awareness, an open mind to change, compassion, and conscious effort. Most of all, however, challenging any stigma requires further education (Albury et al., 2020) and an open discussion with individuals affected by the stigma.
A great example of what a successful change toward inclusive language use can do, is the American-based publication ‘Salon’ which provided a case about HIV. Starting in the 80s, HIV activists worked hard to realise positive change regarding prejudicial language use, practices, policies, and politics. The shift from, e.g., saying "they were infected with HIV” to "they contracted HIV" (Petersen-Edge, 2021) is a small yet very effective change that has positively transformed the way society now sees people living with HIV.
Our commitment to using non-stigmatising language
Our team here at Safe As Houses is passionate about the provision of high-quality, fit for purpose, future-proof homes for people with care needs. There is a severe shortage of this type of housing, and we are determined to be part of the solution.
Yet, with the success we have been having, we are also recognising the responsibility that comes with it. As a company we are constantly learning and evolving, and so is our expertise when it comes to non-stigmatising language. Though we are still learning, we are committed to do right by the individuals in the care sector, and the kind of language we use to refer and speak about those individuals is an important aspect of that.