Standing up for Invisible Illness

Group members

Mairisa Spiers (u1614356), Isabel Williams (u1613157), Nadia Magro-Smart (u1716848) and Ines Carracedo Lerma (u1718402)

The Problem

       Invisible disabilities, also known as invisible illnesses or diseases, are chronic and debilitating medical conditions that may not be immediately identifiable to others but cause significant impairment to the sufferer. Some examples of non-visible illnesses include: epilepsy, chronic fatigue syndrome, cystic fibrosis, arthritis, and fibromyalgia etc (Fabian, 2018). Although taking public transport is a fundamental part of many people’s daily routine, those who suffer from an invisible illness may find it difficult. As their disability is invisible, other commuters will not be aware that they need a seat, in comparison to those with more visible disabilities, e.g. those who are in a wheelchair, or utilising a walking aid. Therefore, individuals with an invisible illness may feel too uncomfortable to ask for someone to give up their seat for them, as they look ‘healthy’ and able-bodied, and may be fearful of being refused. This could result in those with invisible illnesses avoiding public transport. 

       We believe that it is important to spread awareness of invisible illnesses and aim to educate others on how they can alter their behaviour in order to make everyday activities, such as taking public transport, an easier and more comfortable experience for those who suffer from an invisible illness. 

Importance of the problem and evidence 

       Recent statistics highlight that, in the United Kingdom, there are around 14 million people who are afflicted by a debilitating long-term illness, which restricts their daily activities, the vast majority of which are invisible illnesses (Gordon, 2019). These illnesses can have a knock-on effect on sufferers mental health leading to isolation, anxiety and depression (Gordon, 2019). According to Clarke (2017), 96% of illnesses are invisible; statistically, for every person you see who looks disabled, you see at least four more who are disabled, but do not look disabled. Furthermore, 74% of people who live with a severe disability do not use any form of visible aids, such as a wheelchair, or walking stick (Clarke, 2017). These figures highlight that invisible illnesses are extremely prevalent, despite others being unaware of the struggles that sufferers face on a daily basis. 

       Corry Shaw, an individual who suffers from chronic pain and mobility problems, started the “Look up” campaign, due to her negative experiences whilst commuting on public transport. Corry declared that she had been severely embarrassed and brought to tears on several occasions, when other commuters refused to give up their seat for her, and subsequently found it increasingly difficult to request a seat on other occasions (Roberts, 2018). This inspired Corry to create the “Look up” campaign which is aimed to help make journeys for those with invisible illnesses easier and more comfortable. This campaign utilises distinctive badges, for those with invisible illnesses to wear when on public transport. The badges, seen in Figure 1, read “Please offer me a seat,” indicating to other commuters that the wearer is an individual who needs a seat, making it more likely that someone will offer theirs. In addition, it encourages those with an invisible illness to ask someone to give up their seat, removing the fear of rejection and/or embarrassment. According to Scott (2018), these badges have already had a significant positive impact on the lives of those with an invisible illness, with individuals reporting that the badges give, “peace of mind,” and “confidence”. There is also evidence that people would be willing to offer their seat but that they are unsure of how to go about it. In a TFL (2019) survey with 15,000 respondents, 23% of people said they felt awkward offering their seat to someone on public transport and 87% said they’d be willing to offer their seat to someone who might need it more than themselves. It seems that people’s attitudes are positive towards the issues but the attitude-behaviour gap needs to be bridged. 

       Furthermore, we created a petition on the Change website (http://chng.it/CmY9nnPb). This petition was firstly aimed at raising awareness, by giving a brief overview of the importance and severity of invisible illnesses and the negative impact which oblivious commuters have on individuals with invisible illnesses, highlighted by the experiences of Corry Shaw and many others. An effective way to get changing behaviour rolling is to make people aware of the problem behaviour through informational strategies. Tailored information has been displayed on the petition description- aimed at everyday commuters, explaining the problem and how they can help (Abrahamse & Matthies, 2012). The fact that people have left comments on the petition further emphasises the importance of the problem. As seen in Figure 2, the people commenting are either family or friends of people who suffer from invisible illnesses or sufferers themselves. These comments add normative information (Abrahamse & Matthies, 2012) to the petition and strengthens its overall impact as people are more likely to believe that this is a real issue, and they can immediately see that by signing they are having a direct positive impact on the problem at hand. This evidence delineates the importance of the problem at hand and provides a strong foundation for behaviour change. 

       Additionally, we contacted individuals who suffer from an invisible illness and asked whether they would be willing to partake in a short interview or create a short video clip explaining their daily struggles, especially whilst commuting. Common themes across the video clips included feeling like they appear 'too able-bodied' to request a priority seat or that they feel too awkward to ask someone to give up their seat. This highlights the important of the problem and stresses how this is an area in which behaviour change could make a huge difference.

Figure 1. Photograph of our petition on Change.org

Figure 2. Photograph of comments on our petition

Target Audience

The target audience for our behaviour change project was students at the University of Warwick. Most of the students at Warwick live off-campus in Leamington Spa, Coventry and Kenilworth and so commute into campus on the bus every day. Targeting these regular commuters would directly address the problem.
If 21% of the UK population suffer from some form of disability and 96% of those are invisible illnesses then ~20% of the population suffer from an invisible illness. With the student and staff population at Warwick being 33,516 (University of Warwick, 2019) that is an estimated 6,703 people who have an invisible illness at the University. This is a huge number of people and we think this provides a good opportunity for change. Furthermore, individuals are most susceptible to attitude and behaviour change in late adolescence/early adulthood. Targeting university students, who are of this age, means we are likely to have the largest impact (Krosnick & Alwin, 1989).
Additionally, our target audience included Warwick’s disability services. We decided to utilise this department as we thought that they might be more inclined to support our project, due to the services they provide to students with a wide range of disabilities. We also thought that individuals, who may have a disability themselves, would visit the department and notice the poster and they may also be more inclined to support the cause, due to their own personal circumstances.
Our final target audience includes the travel companies, including National Express and Stagecoach. We decided to include these as we wanted to expand Corry Shaw’s campaign in the West Midlands, and we are aware that they travel all across the UK, on a daily basis. Due to the success of Corry’s campaign, we thought that these major companies would also want to show their support.

The Intervention
For our behaviour change project, we aimed to expand the “Look Up” campaign to bus companies in the West Midlands that travel both North and South in the United Kingdom. As other travel companies, such as Transport for London and Transport for Greater Manchester are supporting this campaign, we wanted to persuade travel companies in the West Midlands area to utilise the, “I need a seat” badge. We did this by emailing the bus companies that operate around the University of Warwick and the West Midlands: National Express and Stagecoach. We created an online petition, and distributed the link in order to demonstrate the support for the campaign. We also wanted to expand this campaign by encouraging people to wear “happy to move for you” badges (see Figure 3), as these may also help remove some of the awkwardness experienced by individuals with invisible illnesses. Furthermore, we produced a poster, which was put up in Warwick’s Disability and Wellbeing services department in order to reach a larger target audience about the problem, and to give them ideas on how they can change their behaviour to support the cause.

Figure 3. Our photo of the 'Happy to move for you' badge

Psychological and persuasion techniques used

Emailing Corry Shaw

As a starting point, a message was sent to Corry Shaw (see figure 4), initially contact was attempted through LinkedIn but after no response, Facebook was used instead. The aim of contacting Corry was to get some advice on how best to expand the campaign, as well as to find out the current situation regarding the campaign. Carnegie’s (1964) techniques of being genuinely interested in others’ interests, speaking in terms of their interests, and making them feel important and doing it sincerely were used in the email. We did this through complimenting Corry’s amazing work and highlighting that this was our genuine opinion, shown by choosing to dedicate our project towards an issue important to her.
Although Corry was not the main person we needed to persuade in our project, we thought it would be important to get a response from her as hearing from her would inevitably be very useful. Nonetheless, we used persuasive techniques to prepare for the possibility that Corry had not yet attempted to expand the campaign at all and if not explain why it is important to do so.
The Theory of Planned Behaviour (Ajzen, 1991) was applied, particularly targeting the key variable of ‘Normative Beliefs’ which refers to the importance of others’ beliefs in influencing behaviour. This was done through the use of statistics from the Papworth trust (2018) reporting the need for consistency in services for disabled users. Moreover, we reiterated the importance of the issue for others outside of London, which Corry was already aware of having previously received support from across the country (TFL, 2018).
A similar message was sent to the charity recommended by Corry, Transport For All, however, we are currently still waiting to hear back from them.

Figure 4. Message sent to Corry Shaw, founder of the 'Look Up' campaign

Emailing the bus companies

     Figure 5 shows the email we wrote to the West Midland bus operators: Stagecoach and National Express. According to Ajzen & Fishbein’s (1980) Theory of Reasoned Action, the two most salient predictors of behavioural intentions, and subsequently behaviour, are attitudes towards the behaviour and subjective norms.

    In our email, we aimed to influence the attitudes of the bus companies so they would evaluate the outcomes positively. We talked about the beneficial impacts of them running a campaign similar to the ‘Look Up’ one on their bus network, these being to help those with invisible illnesses and potentially encourage them to use the bus more, which would benefit their business (Ajzen, 1991). As we considered this a crucial point for persuading the companies we included it at the end of the email as, according to the recency effect, information presented most recently is more memorable and holds greater weighting when making a judgement than information presented earlier (Jones & Goethals, 1987). We also recognised that in order to influence their attitudes we had to have a strong message as the Yale approach identifies the characteristics of the message as vital for persuasion (Hovland, Janis & Kelley, 1953). To present a strong message we provided statistical evidence to demonstrate the prevalence of the problem, as a meta-analysis conducted by Allen & Preiss (1997) revealed that statistical evidence is generally more persuasive than narrative evidence.

    Subjective norms are another significant determinant of intentions and behaviour change (Ajzen, 1991). With regards to influencing the subjective norms of Stagecoach and National Express, we informed them of what other successful travel operators, namely Transport for London (TFL), are doing to help the problem. The actions of competitors and how well a company can keep up with other similar businesses is important to the reputation of companies (Pollach, 2015) and so highlighting what other companies are doing may encourage behaviour change. We have sent follow-up emails but are still awaiting a response from the bus companies.

Figure 5. Email sent to Stagecoach and sent as a letter to National Express

The poster

       A further aim of our project was to extend the already established campaign by promoting the “happy to move for you” badges, shown in Figure 3. These badges are worn by commuters who would be willing to offer their seat to an individual who is in need and we believe that these could help reduce the awkwardness and discomfort experienced by those with an invisible illness when requesting a seat. To implement this intervention, we created an informative and eye-catching poster that outlines the problem, and informs the reader of this badge system, and how they can support this movement (see Figure 6). We then emailed University of Warwick’s disability and wellbeing services to ask whether they would be prepared to display this poster in their departments. We thought that this would be a good place to exhibit our poster as we gathered that other students, who may have invisible illnesses themselves, or may be more inclined to support this movement, may visit their services. 

Figure 6. Poster campaign placed in the University of Warwick's Wellbeing services department

       Figure 7 shows the emails sent to Warwick’s support services. As we still had not heard back from them and the deadline was fast approaching, we visited the department in person, and the services agreed to put our poster up on their wall in  their department. Please see below for the poster, and the email correspondence. A variety of generic persuasive techniques were utilised in the poster campaign, such as emotive language to elicit engagement from the audience, rhetorical questions e.g. “would you like to make the journey on public transport more comfortable for those who have an invisible illness?” as it encourages the audience to say “yes”, imperative commands, such as “buy today” and finally personal pronouns, such as “you” which implies that the audience is necessary for the success of the campaign. According to Cialdini (2016), the word “you” captivates the audience’s attention, keeps them engaged in your content and encourages them to continue reading further. Finally, this poster utilises persuasive techniques by drawing upon Maslow’s Hierarchy of Needs’ (Maslow, 1943). This poster appeals to the social and esteem needs of the audience, and may persuade individuals to buy as they will gain recognition for supporting a good cause.

Figure 7. Email correspondence between Warwick's wellbeing services team and ourselves

The video

       As well as promoting it to those who may already be familiar with invisible illnesses and such campaigns, we wanted to inform those who may not be so aware of these issues and encourage them to take action. To achieve this, we approached people in and around Warwick accommodation asking them whether they’d given much thought to the types of problems people with invisible illnesses face when taking public transport. We then showed them a couple of videos of people we know talking about their invisible illnesses and experience using public transport. This exploits the idea that a message focused on a single concrete individual is more persuasive than more abstract messages, sometimes known as the identifiable victim effect (Jennie & Loewenstein, 1997). Furthermore, the people we asked to speak about their invisible illnesses were in their early 20s and, as our target audience for this intervention was university students in their 20s, this taps into the homophily principle. The homophily principle describes that perceived similarities between people, in this case age, results in positive reaction, greater emotional engagement and compliance (Buller et al., 2019; Byrne, 1997). Similarities between the source of a message and its audience can also increase identification with a situation or person and increase the perceived source credibility (Hovland et al., 1953).  After showing them this video, we then asked these individuals if they would sign our petition to bring the ‘Look up’ campaign to the West Midlands and if they would give up their seat for someone with an invisible disability. With their consent, we filmed them confirming their attitudes which is a form of public commitment. Public commitment has been shown to increase an attitude’s resistance to change and the likelihood of an attitude guiding our behaviour, as publicising our views binds us to them due to our desire for a consistent self-image (Schienker, Dlugolecki & Doherty, 1994). Even those who did not agree to be filmed made a public commitment by expressing their attitudes to us.

       A few weeks later we spoke to some of the same people about their attitudes and asked whether they would buy a ‘happy to move for you’ badge. We found that the majority of the people we spoke to again agreed to buy a badge or at least considered it. This initial smaller request, to sign our petition, and a subsequent larger request, to buy a badge, is an example of the foot-in-the-door technique, as asking for a small request first has been found to increase compliance for subsequent requests (Freedman & Fraser, 1966).This same concept can be applied to the other petition we made on Change.org, as by getting people to sign the petition, they would also be more likely to buy a badge or stand up and give up their seat when they see someone wearing the badge. In addition, it is also possible that people were more likely to agree to buy a badge to avoid an aversive state of holding inconsistent attitudes, known as cognitive dissonance, as if they had previously stated their support for the cause, they would want their subsequent behaviour to be consistent with this attitude (Festinger, 1962). 

People wearing the 'happy to move for you' badges they've bought

The future of our project

       We think this project could be further expanded in the future, with more resources being added and more time. We think this could be achieved by keeping in regular contact with the travel companies in order to promote our ideas. One such idea, would be to ask the National Express whether they could add some information about the “Look up” campaign to their pre-recorded health and safety message they play at the beginning of each journey. We think that this would be useful as it would reach a large target audience, who utilise public transport, and are travelling to all regions of the country. Furthermore, we also think that bus companies could possibly advertise the campaign by printing the poster on both, the sides of the buses, or at bus stops, with shelters. This is because, when people are waiting for the bus, they are more likely to read the poster and what the campaign is about and this will be fresh in their mind for their journey. This could perhaps, encourage them to “look up” for other passengers who might need a seat, and encourage them to offer their seat. Additionally, we also thought that this campaign can be utilised across all public transport links, such as trams and trains. We thought that  this could be achieved by printing an image (such as the one seen in Figure 8) next to where the tram/train map is usually placed. This image poses questions which would cause commuters to process more deeply  and may help them to change their behaviour. 

Figure 8. Possible future image to display on public transport links

       Finally, a further idea to promote this campaign in the future would be to contact the local MP for our area. In the original “Look up” campaign, Corry Shaw had great support from the Mayor of London, Sadiq Khan, who said: 

“I was determined to make the campaign a reality on London’s transport network. It's a fantastic initiative, and I hope it helps thousands of people get around London more safely and easily, while increasing awareness of disability among Londoners. Alongside the success of the 'Please Offer Me a Seat' campaign, the Look Up campaign will be an important part of our work making London's transport system genuinely accessible for everyone”. (TFL, n.d).

References

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