PART 5: How can we promote more open and informed discussion?
by Richard Kilborn
Opening up the discussion
The majority of the questions that we included in our survey were of the multiple-choice variety. This was to make the questionnaire more user friendly and to encourage a greater response. The last five questions in the survey, however, were of a more open-ended type and provided respondents with the opportunity to give more fulsome comments. Some of these comments proved to be highly revealing, especially regarding people’s thoughts on the kind of language that was appropriate to discuss difficult and sensitive issues.
The first of our open-ended questions had the following wording:
‘When people you know talk about those who have hearing or memory loss, has anything struck you about the language they use?’
In framing the question in this way, we were making the assumption that people had already had experience of being in this situation – or would at least be able to envisage such a scenario. What was striking about the responses we got, however, was the degree of understanding that people had of the types of language that might prove harmful or hurtful to someone with hearing loss or memory loss. For instance, respondents drew attention to the likely frustration that those living with these conditions would experience if they were spoken of in condescending or derogatory terms. Several people expressed concern about how demeaning it must be to be talked about in a way that infantilised the individual or questioned their intelligence:
“They speak as if the person is not there. It is as if their intelligence is in question.”
“What strikes me is the language can sometimes sound derogatory or even dismissive of the serious impact the loss could have on that individual.”
One or two respondents also commented on how painful it must be if other people reveal a pitying attitude to someone with hearing or memory loss, thereby encouraging the belief that this is the defining feature of their being:
“I don’t like how people close to me talk about hearing or memory loss in such way that they pity them and make it the central aspect of their character.”
People living with various forms of disability have expressed similar dissatisfaction when they are spoken about in such dismissive terms. A survey conducted by the Leonard Cheshire organisation found that many are needing help to understand what words can cause offence. As a Leonard Cheshire spokesperson commented:
“We found that 46% of all disabled Brits feel regularly ‘ignored’ or ‘overlooked’ by non-disabled people due to widespread use of inappropriate or demeaning language.”
Our respondents were also eager to underline how the type of language used to talk about hearing and memory loss depended on additional factors such as the precise relationship between those involved in the conversation. For someone in a close personal relationship with the person with hearing or memory loss, the language used can frequently be emotionally charged. This is understandable given the various challenges that living with hearing or memory loss can give rise to. By contrast, those working in a professional capacity will tend to be more constrained and circumspect in their choice of language. As one of our respondents commented:
“Ordinary people, when talking about family members, neighbours etc who have hearing loss often express frustration. Those in professional capacities often seem to be working hard to use the terminology that is currently acceptable.”
This difference in levels of formality also extends to whether the communication is in spoken or in written form. The latter will tend to favour what might be seen as more ‘acceptable’ terms in describing or referring to medical conditions. One of our respondents picked up on this difference in the following comment:
“When talking about themselves, people tend to say they have ‘trouble with memory’ or are ‘a bit hard of hearing’ rather than using terms such as ‘hearing impaired’ or memory loss’ which I think are more medical terms and are used more in written communication than spoken.”
Finally, several people in the survey commented that many individuals, in order to avoid causing offence, resort to talking euphemistically about these conditions:
“They often use various different terms as they don’t want to offend anyone by using inappropriate language.”
“Generally, I think people use euphemisms, rather than directly talk about someone being deaf or having dementia.”
On the other hand, some respondents recognised that the use of euphemistic terms can come at a certain cost. In the endeavour to show consideration, one finishes up not showing sufficient respect for the person. In the words of one of our respondents:
“The words that they use are clichéd and not often descriptive of the person.”
The diverse responses we got to this question about the language people use in talking about hearing and memory loss brought home to us the sheer difficulty of striking a balance between, on the one hand, being open and honest and at the same time showing respect for the feelings of individuals. As one person put it:
“I often feel that people, including myself, sometimes struggle to find the appropriate words and [I know that] I can sometimes sound a little patronising.”
Putting yourself in someone else’s shoes
All of us know how difficult it is trying to put oneself in someone else’s position. This especially true if the other person is living with some form of disability. The second of the more open-ended question in our survey asked respondents to imagine what some of the main challenges would be for someone who has worried about their hearing or memory, particularly when raising their concerns with other people.
As one might have expected, there were a wide range of responses to this question, but people tended to focus on three or four main areas of challenge. Several of our respondents referred to the various levels of embarrassment or shame that an individual with some degree of hearing or memory loss might feel when talking about their concerns. In the words of one respondent:
“[They probably feel] embarrassment, not wanting to bother someone with their problem and a sense of inadequacy at expressing themselves.”
A significant number of our respondents also felt that one of the most challenging aspects about voicing one’s concerns would be fear or apprehension about the consequences of so doing. For instance, one person suggested that one of the fears that someone would face when opening up in this way was that of “not being taken seriously as a person” Another thought that the fear would take the form of not having one’s concern properly acknowledged. Several of our respondents were of the opinion that it would be people’s fear of being thought stupid or lacking in intelligence that would hold them back from opening up about their concerns. Another respondent, however, felt that the fear would be that of “exposing [their] vulnerability” and thereby heightening the risk of their being stigmatised.
Communicative barriers, including that of denial
One or two people in our survey suggested that the biggest hurdle for a person with concerns about their hearing or memory would be admitting to themselves that they had a problem in the first place or being honest about how serious their condition was. For instance, one respondent observed that the underlying reason for some people adopting a head-in-the-sand attitude was the fear about what the economic consequences of full disclosure would be.
Another respondent felt that there would be a significant difference in the readiness of people to open up about their condition, depending on whether the issue was one of hearing or of memory. This person thought that, whereas most people would be prepared to talk more or less openly about hearing loss, a person experiencing memory loss would be much more cautious and circumspect. They might even refuse to admit they had any issues at all, since the prospect of having to talk to friends or family members about it was just too painful:
“The reduction in the ability to hear can be rectified, whereas memory loss is more likely to have [people] thinking it’s dementia. So, I think that people are more likely to get their hearing tested or get hearing aids. But saying that they have memory loss can cause relatives & friends to ‘fear the worst’. So, they may be more likely to minimise memory loss.”
Finally, on this question of what would help or hinder a person in talking openly about their condition, one or two respondents raised the issue of the role played by the other person involved in a conversational exchange. One of our respondents, for instance, was keen to emphasise that the success or failure of such an exchange would depend on the readiness of a sympathetic listener to hear and understand what the other was attempting to convey:
“I think that people can sometimes feel really awkward when someone is telling them about health concerns. So, it can be a challenge to get someone to listen and take your concern on board. It’s too easy to dismiss someone’s concerns. I also think that no one wants to be seen as not being perfect and that people might think less of them if they have hearing or memory loss.”
Another respondent went into considerable detail concerning do’s and don’ts when conversing with a deaf person:
“When you speak to a deaf person, take your time, don’t rush them, speak slowly and carefully. If you can’t hear well it can be hard to follow what someone is saying. It takes a while for the brain to catch up with the sense of the words, as it were. So be patient, given them time. If the deaf person is looking confused, repeat what you’re saying to give them another chance to hear and understand what you are saying”.
In some cases, however, the challenge of getting someone to listen and take one’s concerns on board can clearly prove to be difficult. In the following instance, a respondent had had experience of wanting to raise his or her concern, but all their efforts had literally fallen on deaf ears:
“I have found that it’s difficult to get anyone to take you seriously when you are, say, under 50 years of age. You get palmed off on such a regular basis that you just give up trying to get help.”
Talking honestly and openly about hearing loss and dementia is clearly an issue of considerable concern to a great number of people. It is encouraging to discover that, when people are asked to put themselves in the position of someone who is personally affected by one of these conditions, they are able to come up with a series of generally helpful suggestions. Once again, however, the challenge remains that of ensuring that these suggestions are fed through to organisations and healthcare professionals responsible for providing help and support.
In the final blog in this series, we will be exploring ways of encouraging the use of more positive language when talking about dementia and hearing loss.