Last week we looked at how language can be used, consciously or unconsciously, to oppress people and other them. This time, I want to think about something much more specific. That is, the way language is used in health and social care settings and how it can sometimes contribute to disempowerment of people who use those services.
Is this a form of oppression? Absolutely. People who use services are in a vulnerable position because of their disability, age or health (particularly mental health). These are all groups that experience oppression and are marginalised by a world set up to cater for people who aren’t seen to be like them. And so professionals need to be mindful of the impact of the language they use.
Even if this doesn’t feel relevant to you, it’s likely that it will be one day as you and your loved ones get older. It might also help you think about the language you use towards people you have authority over, whether they are your employees, your children or anyone else who looks up to you. If you hold the power, it is vital to use that power fairly and wisely.
I’m writing specifically about care settings mainly because I’ve spent my whole career working either in or with health and social care services and have found that there are a lot of disturbingly common trends that show that we have failed to move away completely from institutional care. Certain language and ways of referring to people are almost universal and because of this, they are accepted without question. So I want to question some of those things now, as I do in my work. I am exclusively referring to adult services because the dynamic is a little different with children’s services.
If you are healthy and able-bodied and have never had to be cared for long-term by professionals (or worked as one), it will be helpful to start with an example so you know the sort of situation I am referring to.
Imagine something happens to you that changes your life. From now on, you will have to start using a health or social care service full time. This might mean moving into a care home, or having carers or nurses come to visit you at home at set times throughout the day. It might mean moving into a hospital ward. Whichever it is, the impact on your life is huge, sudden and frightening. You might not be able to understand what is happening, depending on the reasons for your changed needs.
Instead of being able to do everything for yourself (and, perhaps, your children and pets), you suddenly have staff around who help you. They do some things for you, like preparing your meals, and they do some things to you, like washing you.
How might this make you feel? Take a moment to reflect.
I found that I might feel powerless, infantilised and dehumanised. I might be grieving over the loss of my independence, something that I place a very high value on. I might be thinking that I had lost not only a whole way of life, but also a part of who I was.
I thought that I would most definitely have this conversation with myself again if ever someone I cared about were placed into this sort of situation. And then I would have it with that person, if I could.
Now imagine that instead of doing things for you and to you, staff are doing things with you, like working with you to prepare a meal of your choice, and helping you do things for yourself, like teaching you how to use equipment so you can get in and out of the shower.
Does this make any difference to how you feel? Again, let’s reflect. I thought that I might feel supported and reassured in a really frightening situation. I might still be grieving over the loss of my independence, but would gain solace from the fact that I was still allowed some degree of autonomy.
The end results the staff are working towards with you in each of those two scenarios are exactly the same: you get a cooked meal and a shower. But the way staff approach and talk about those tasks says a lot about the culture of a service. It might make people who use the service feel very differently about their care, their lives and their ability to make choices and have control over both of these. It might mean that the staff are carrying out those same tasks in different ways that give people different levels of choice and autonomy over how the tasks are done.
If in future you have to help someone choose a care service or do so for yourself, it’s a good idea to visit a few times and listen to how staff refer to people. (Note that I am absolutely not criticising care staff, but rather the cultural context in which they have been trained to do their jobs. Some individual staff are brilliant at empowering people.)
Let’s have a look at some of the ways in which language can contribute to a culture that disempowers people.
- The way we talk about people might focus on problems, disabilities or things people can’t do. I have seen a care plan (a comprehensive account of what support a person requires a service to provide) that is written like this: “Problem 1: [Name] can’t walk independently… Problem 2: [Name] has epilepsy.”
By seeing a person as a set of problems to be solved, we are taking away their personhood and turning them into a task to be performed. By giving them constant messages that say “you can’t do A, you can’t do B” we are telling people they are weak and helpless. We reinforce this by constantly showing them they can’t do things (perhaps by doing them ourselves without asking), and they are likely to start believing that they can’t do anything for themselves.
- We often fail to take into account how people communicate or understand the world. I see a lot of written information supposedly created for people who are using services, when those people aren’t able to read. When pictures and symbols are used, they’re not always used thoughtfully and don’t do a good job of communicating the intended message.
By doing this, we are telling people that they don’t matter so much if they’re not able to communicate in the same way as most people. We are effectively taking away their voice.
The number one worst – and alarmingly common – phrase I hear care staff say about people is that he or she “can’t communicate.”
This is nonsense. It is NEVER true. Everyone can communicate actively if they are conscious, but some people do so in more subtle ways than others. If the equipment that Professor Stephen Hawking uses to communicate malfunctioned, would we write him off as being incapable of communication? No, of course not. We know he can communicate extremely effectively. He just needs support from his equipment to do so. Thousands of people aren’t able to speak, write or use sign language, but each one of those people is capable of communication if we bother to give them the support they need to do so. Far too often, we just don’t take the time to do that.
Using the phrase “can’t communicate” to describe someone who does not speak is tremendously disempowering. It is to completely ignore and invalidate all forms of non-verbal communication such as eye contact, facial expressions, gestures, noises and vocalisations, writing or making marks, signing, touch, actions such as moving towards a desired object, and many more. Billions of ways really, because every human being on Earth is different and not one of us communicates solely by using spoken words.
Communication is our interface with the world. So if we invalidate a person’s communication methods because they are different, then we are invalidating the whole person because they are different. Just because someone has a severe learning disability or brain injury or advanced dementia doesn’t mean it isn’t worth making the effort to enable their communication.
(It is not “patronising” to simplify your words or not automatically assume someone will understand you if they don’t communicate in the same way you do. But it is patronising and disempowering to always speak to someone in a falsely bright and cheerful voice as if they were a child and then turn to talk to your colleague about them in your normal tone. That’s just telling people that they are “other” and that you see your colleague as an equal but them as beneath you.)
- We talk about people, rather than to them. A member of staff might walk up to another member of staff who’s sitting with someone, and say “Has she had her meds?” meaning the person they are sitting with. When they get their answer, often they walk away without acknowledging the person at all.
Even if the person isn’t able to communicate verbally, there’s a world of difference between this and going up to the person to say “Hello [name]! I was just wondering if you’d taken your medicine yet. Let’s see if [Staff] can tell me.” Even if she doesn’t fully understand what we are saying, she will know that we are acknowledging and including her to some degree.
When we talk over people’s heads about their own lives or the care they are receiving, we are telling them that they don’t have a say in it. If we do this, they probably won’t realise that actually, they do have a choice in how they live their lives rather than having everyone else deciding things for them. And if we do this because the person is deaf or has complex needs and it just takes too long when we are very busy, then (because they are still aware that we need to discuss their care) we are effectively telling them that we’re too busy to meet their needs and therefore their input doesn’t matter enough for us to make the effort.
- We make people passive agents in their own lives, talking about doing things to or for them. Social services often talk about “placing” people in care homes, as if they were chess pieces. Phrases we hear a lot in social care are “I’m taking [person] for a walk” or “have they been toileted?”
Who is the walk supposed to benefit? Who is using the toilet? It isn’t the member of staff. It’s the person being cared for. But this isn’t what we are telling them when we use this language. The active person in the above sentences is the member of staff.
You could take a dog for a walk, or a rugby ball, or a potted plant. By using this language about a person, we are reducing their personhood and autonomy to that of a passive object or pet. How do we then expect them to have the confidence to tell us where they want to go on their walk? Why should it be care staff who choose where people take their morning stroll?
On the other hand, you could accompany someone who is taking a walk, or you could support him to go and use the toilet. Then he no longer sounds like a puppet. Remember that unless he is deaf, he hears what you say too.
If someone lives in a care home, we often forget that this is their home. We confuse young adults with learning disabilities by talking about them going “home” to their families at the weekends after they’ve been repeatedly told that “this is your home now,” and we talk about people “helping” with the cooking or household tasks in their own home. This is how we speak to our children and is a really good way of denying adults their independence and making them feel helpless and passive. Supporting someone to manage their household, rather than telling them they are “helping” with something you are doing, is a much better way of giving someone the message that they can be the proud owner of their own lives.
- We tell people what’s going to happen, rather than asking them. This is particularly true in residential care, where a small number of staff often have to care for a relatively large number of people (it’s even more true of hospitals, but I’d argue there are more valid reasons there, with some exceptions). So that everything can get done in time, care homes often have rigid routines. Although this is often dictated in part by things neither staff nor residents can control (for example, doctors often prescribe medicines to be taken at certain times of the day), there isn’t usually any particular reason for tea always being served at 5pm or board games being wheeled out at 3pm.
Don’t get me wrong: routines are a really good thing for most people. They give our lives structure when we’ve lost the ability to work, for example. My point is that I have never once come across a care home routine that exists because management have asked the people living there how they would like things done, down to staff shift times and (if applicable) the cook’s working hours. Yes, individuals are (in good services) asked about their personal care routine and what time they like to get up and so on, but they still don’t get much choice around things that affect them as a group of people.
Because staff are often so set in their ways, they sometimes forget that they are doing things to help individuals, not for the home. But there is a world of difference between “Come, it’s tea time now” and “What time do you want your tea today?” One gives someone the message that they don’t have a choice. The other makes it explicit that they do.
Another thing I see a lot is staff asking or telling people to do things but not explaining why. For example, “sit down please” to someone who is pacing around a room. This communication failure can be very disempowering because it doesn’t give people an informed choice. “Because I said so” is not a valid reason for an adult to do as you say. There’s no empathy demonstrated. If I heard more “[Person], you seem restless. Would you feel more settled if we sat down for a chat?” then I would be a lot happier.
- We give the impression of “knowing everything” about a person rather than letting them tell us about themselves. Staff have to know a lot about people they support in order to provide good care in the context of the individual person’s likes and dislikes, medical history, personal history, hobbies and interests, routine preferences, healthcare needs and so on.
However, if they know this simply by reading the information they are supplied without the person being there, then this reinforces the idea that we are talking about a person over their head. Why should that person then want to open up and get to know us, if they are being told we already know everything about them? We are treating them as a complex task we have to be trained how to do, rather than someone who is capable (if they are) of telling us about themselves.
I have seen staff coming on shift, reading the notes from the previous shift and then their first contact with a person using the service consists of the member of staff saying in a jokey way, “I heard you were a bit naughty and did a lot of shouting this morning!”
Not only is this infantilising the person and trivialising their distress, but it’s taking away their opportunity to tell us their perspective of what happened. People generally don’t just start shouting because they are malicious and fancy stirring things up. It’s usually because they are angry, upset, extremely under or overstimulated or otherwise distressed. If we are giving the message that we know what happened and have been able to draw our own conclusions without consulting them, then why should they feel their input would be valued? And if we don’t take into account their feelings and reasons, then how can we improve things so they don’t have to feel that way?
- We fail to use the person’s preferred name, or always use pronouns rather than names. If we are going to refer to someone only as “he” or “you” or “she” then we may as well just give them a number and be done with it.
At a care home, I recently met a woman who had a very beautiful and unusual name. But if you transposed two of the letters in that name, you ended up with a different, more common name. Despite the fact that all of her care documentation had her real name on and her family were often in contact, staff (including the home manager!) persisted on calling her by the more common name when speaking to her, speaking about her or writing records and reminders about her care. So the people living with her (and their visitors) called her by the wrong name, too.
When I asked the manager, he admitted that yes, the more unusual name was the woman’s correct name. But I later heard him speak to her, using the wrong name again.
The woman in question could hear perfectly well, but was not able to speak. Can you imagine how disempowered you might feel if everyone you met called you by a name that wasn’t yours? Would you maybe feel that they were erasing your identity, particularly if you had a unique name that you were proud of? Would you maybe start thinking that nobody was talking to you at all but ignoring you in favour of someone standing behind you? You might even start feeling that everything was happening to someone else and you were not really you any more.
- We refer to people’s care in terms of tasks rather than the people themselves. Recently I heard one member of staff saying to another (in a communal area) “Have you done Room 5’s meds?”
Was there not a person in Room 5?
This sort of casual dehumanisation reinforces the message that people’s choices don’t really matter because they are simply there to have things done to them. By referring to people as tasks, we erase their agency and ability to choose. Perhaps in this case, the member of staff was trying to preserve the person’s confidentiality by not broadcasting the fact that they needed medicine. But this was misguided. The people who could overhear weren’t daft. They knew where Room 5 was, and they knew who occupied it.
If we use language in the ways shown above, we are giving people the message that they don’t have a choice in how they live their lives. No matter how experienced and intelligent those people are, they are likely not to realise they do have choices if they are never offered choices.
If we take away people’s right to make choices, then we are effectively imprisoning them. Imprisoning them in their own homes, in unfamiliar buildings, or in places where they are surrounded by other people in exactly the same situation.
Do they deserve this, just because they need a bit more support than the rest of us? Do they deserve treatment that makes them feel objectified, dehumanised or as if they are a burden?
The upshot of this is that people may lose motivation to do things for themselves, or might lose the skills they have built up over their lives, because they are led to believe they can’t do things for themselves.
They may feel less able to speak up about abuse or discrimination, or come to believe that they deserve this treatment. Because, horrific though it may be to contemplate it, some care staff do abuse the power that their job gives them. They are a tiny minority among a hard-working and caring majority, but they do slip through the net from time to time. And what’s frightening is that they usually believe they are doing the right thing.
Perhaps if we didn’t use language that constantly reinforced the power of care staff over people using services, then this would not happen so much. If we gave more of that power to the right people – those whose lives we are effectively controlling – then perhaps staff wouldn’t have so much power that they could potentially abuse in the first place.
If people feel that they or their opinions don’t matter, they won’t want to communicate their thought and feelings. If they don’t do that, then how can we care for them as individuals? If we tell them they are just another task, then that is how they will behave: passively.
In other words, if we continue to use disempowering language, then people’s quality of life will suffer. Ultimately, they lose their dignity and independence or are infantilised because they aren’t being given the opportunity to be treated and to behave as adults. People might feel miserable and lonely, but not really know why.
Is this how we want to treat our loved ones when they need to be cared for?
Or could we perhaps make a bit more of an effort? Can we not describe a person’s individual communication methods instead of reducing them to the status of a passive object that can’t communicate (and therefore implying that because they apparently can’t make choices, express preferences or tell us what they want then there is no point in trying to listen to them)? Can we not let people know they can have the support they want and need to do as much for themselves as they can, rather than just doing things to them? Can we not use people’s names – the names they want to be called – and acknowledge who they are rather than referring to them as pieces of work? Can we not refer to people’s own lives as their own, rather than as if they are just there to help us get our jobs done? Can we not ask people what they think and about themselves, rather than telling them we know everything about them already?
Of course we can!