Blockages in the flow of information: On people with special needs and people in special situations

Health education is a central pillar in the public health response to the Covid-19 pandemic globally. In Uganda, the public health response has a top-down design. This means measures including health education programs are conceptualized by public health experts and political authorities at the top, and information flows down through the chain of command to the people at the ground. The top-down approach intends to foster the broadcasting of right information while preventing the circulation of wrong information, myths, and rumors. Public health messages focus on informing people about the dos and don’ts in dealing with the pandemic and the messages are shared with the public through videos, podcasts, blogs, speeches, TVs, radio, newspapers, manuals, and directives like the Standard Operating Procedures (SOPs).

However, the focus on right and wrong information, defined mainly by experts and authorities at the top, neglects how information flows to the last woman and man on the ground. It is important to understand that information and knowledge keeps flowing irrespective of whether it is right or wrong. This information and knowledge flows in unexpected ways through a broad range of channels – be it health education campaigns or WhatsApp groups, Facebook posts, Instagram, and Youtube.

More importantly, exploring this flow of information directs our attention to blockages, as I learned during my field research. Blockages refer to the obstacles that prevents information from reaching people at all.

Understanding these blockages is particularly important for our research project on Covid-19 testing, which builds on the assumption that what people know or not know about the pandemic cannot be separated from how they come to know and unknow. In this regard, blockages in the flow of information is one of the factors that produce a not knowing and even an unknowing and this may have significant consequences regarding the response to the Covid-19 pandemic.

These blockages do not simply result from the absence of reliable communication technologies or the breakdown of infrastructure. Rather I realized that how we imagine our communities fundamentally shapes the ways in which access to information is designed. This imagination automatically excludes certain groups of people from accessing information. By unpacking the blockages, we may also learn something about our communities in Uganda.

Blockages to the access of Covid-19 information by Special Needs Persons

In my field research on Covid-19 testing, I usually assume that by now most people have some basic knowledge about the availability and accessibility of Covid-19-related health services, including Covid-19 tests. After all, we are now two years into the pandemic and the pandemic has been at the center of our everyday life and conversations. In my interviews in which I ask people about “communities’ understanding of Covid-19 testing”, one of my informants, who was a social worker recently recovered from Covid-19, drew my attention to people with special needs.

In our conversation, it occurred to me that we rarely think about people who use quite different and complex methods of communication, when we talk about the governments Covid-19 information campaigns. We rarely ask how health education programs address special communication needs of people in order to raise awareness and sensitize communities.

As told by my informant, persons with special needs, for example the deaf, are only able to obtain information from specialists trained in communicating their way. She narrated that many special needs persons live in hard to reach-rural areas, where these specialists that can pass on Covid-19 information are scarce. The category of people with special needs is quite broad comprising sensory disabled people like the blind and the deaf. The physically disabled persons like who are paralyzed or the amputees, and those suffering from mental illnesses, also belong to this broad category of special needs. The term “special needs” here alerts us to the inappropriateness of the word “disabilities” and stresses that it is the ways facilities, infrastructures, and services are designed that make people with special needs disabled.

My own everyday experience of Covid-19 health education measures confirms that it is unclear how and from where, special needs persons can receive information and how they should know about Covid-19-related health services. As my interlocutor explained, persons with special needs are not adequately represented in the structures of Covid-19 task forces. There is only one person representing special needs persons and one interpreter. These two representatives struggle amidst all odds to translate Covid-19 information to their peers. For example, on Sundays they provide Covid-19 information to their peers who go for prayers at a disability center located in the city of Gulu. However, only urban dwellers and those who might attend church benefit from these services. But what about rural dwellers? In view of the limited provision of information for special needs persons, my interlocutor believed that the majority of persons with special needs may not know about Covid-19 testing and vaccination. Moreover, as she pointed out, this lack of access to information ultimately exposes these people to greater health risks and reinforces social exclusion.

Special needs persons represent one of the categories of people who are insufficiently informed of Covid-19 related health services, including Covid-19 testing, because their needs are not adequately recognized by public health response authorities. This made me wonder who else is lacking access to information and is absent from our discussion about what we know about Covid-19 pandemic and how we come to unknow about it.

Persons in special situations – in the refugee camps

Another group that I found to require special attention when it comes to sharing Covid19 messages, were the refugees in Northern Uganda. For several years, Northern Uganda has been hosting large numbers of refugees from South Sudan and the Democratic Republic of Congo (DRC). More than a million refugees are currently living in gazetted refugee settlements in the northern region. Some refugees have lived for many years in the region and have now been absorbed into their host communities. Refugee settlements are socially and economically integrated into these communities. This means that both refugees and Ugandans do farming, buy and sell products at the same market, visit the same health facilities, and are often neighbors and friends.

However, during the Covid-19 pandemic, refugees have had different experiences of the Standard Operating Procedures (SOPs), which had been introduced countrywide. During one of my health center visits, I met a mother, who was also a Female Zone Leader in a refugee settlement. In our conversation, she easily recounted all the Covid-19 SOPs and emphasized that refugee communities are adhering to them. These include the frequent washing of hands with soap, using sanitizers, social distancing, and wearing masks. Obviously, these are the most common and widely circulated strategies for preventing Covid-19.

In our conversation though, what struck me most was that people in refugee settlements, where my interlocutor lived, apparently had none or very little knowledge about Covid-19 testing and were not aware of the availability of Covid-19 testing services. This mother and leader only got to learn about Covid-19 testing services after she was brought together with other refugees to this health center to seek treatment. When the doctor requested her and her child to do a Covid-19 test, she learnt that alongside the SOPs she knew so far – there is also testing.

While the Covid-19 pandemic has posed numerous health challenges to all categories of people, not all people have the same access to information. There are categories of people, who are part of our communities – we live and interact with them and assume that they have access to all Covid-19 information just like we have. However, their access to information is limited.

These two cases tell us something about the blockages and fissures in the flow of information and knowledge. What we can learn from these blockages in the flow of information is that communities are diverse. The cases discussed here may appear special, but being special means that they reflect how diverse communities are. Moreover, they show that this diversity is not recognized and supported by conventional health education strategies. The focus on health education is on misinformation and yet modes of communication are increasingly digitalized. We are using communication technologies like WhatsApp and Zoom to participate in the global flow of information and knowledge. Consequently, we might be exposed to all kinds of rumors, conspiracy theories and fake news. But our concern about this misinformation fails to pay attention to a far more profound exclusion of people from the flow of information and knowledge. To assess people’s knowledge and attitude about Covid-19 pandemic, we should not only ask people what they know about the disease and health services with the aim of correcting wrong information. Instead, we should also follow the flow of information and identify blockages. Stumbling over these blockages makes us aware about diversity in our communities that is neither reached nor recognized by public health measures. By contrast, a more inclusive approach would recognize that diversity is the very fabric of our society. Here, I have focused on special needs and people in special situations. It might be worth to ask how other categories of people have not been able to participate in flow of information and knowledge in Uganda. We can also identify blockages in the global flow of information.

The case of Covid-19 testing also raises important public health questions. The forms of not knowing and unknowing about services and risks produced by blockages in the flow of information might have serious public health consequences. When large groups of people do not know about testing and hence do not test, then the prevalence of Covid-19 in these groups of people and the true prevalence of Covid-19 in the entire country remain unknown, too. Again, the consequences of this unknowing may have detrimental consequences for people’s health experienced in form of seemingly new and unexpected waves of Covid-19.