Lwanga has developed a strong relationship with his phone. The day he forgot it at home, he felt ‘depressed and lost’ – ‘lonely’ because he could not make his usual contacts or access any information. It was a long day for him and he returned home early. It had always been Lwanga’s wish to own a smartphone. He wanted to be in the same ‘league’ as his friends. This finally became possible when he earned some good money as an usher at the East Africa International Deaf Youth Conference in Kampala in 2012. He bought a second-hand smartphone, which family members and friends taught him how to use. He could not hear it, having been DeafFootnote 1 since childhood, but the vibration function helped him to feel messages when his phone was in his pocket, while blinking lights alerted him when his phone was at a visible distance.
At the age of twenty-seven, Lwanga was a heavy user of Facebook and a member of sixteen WhatsApp groups. More than half were ‘mainstream’ groups, where he was the only Deaf member, while others were only for the Deaf. These enabled him to access information on HIV and AIDS. Workshops on HIV and AIDS were being organized and participants were invited through Facebook and WhatsApp groups. Those who attended workshops or other events would update fellow Deaf persons about what had taken place. Lwanga got information on prevention and care for those who are HIV positive. Consequently, Lwanga has only one girlfriend and has learned and understood the importance of condom use. Although he is not HIV positive, Lwanga knows where to access treatment.
In addition to his smartphone, Lwanga has access to other communication technologies. He can read English, so billboards and posters can inform him, at least in principle. He has a television and can benefit from programmes with sign language interpretation. However, he complains that most messages about HIV are designed with the assumption that all people can hear and see.
In this article, I analyse how communication technologies are employed by Deaf persons in order to access HIV and AIDS education messages in Uganda. This requires an appreciation of how such technologies are used in general by Deaf people, as well as an understanding of what is specific to communicating about HIV. The efforts to spread information about prevention and treatment to all parts of the population have increased the need to understand how Deaf people (and those with other kinds of disabilities) access and utilize ‘universal’ communication technologies. My argument is that these technologies, whose purpose is to mediate information, are themselves mediated by social relations. In the case of smartphones, they also mediate and transform relations. Two contrasts are apparent: between types of technology and types of social relations. I compare the mediation of the ‘old’ communication technologies – broadcast and print – with that afforded by the newer medium of smartphones; and I discuss communication with hearing people in contrast to communication with others who are Deaf. As I will show, however, these categories overlap. People may use their mobile phones to discuss print messages; and they may use all the communication technologies to interact with both hearing and Deaf others.
Rogers (Reference Rogers1998: 497) argues that ‘communication technology has historically isolated Deaf persons from mainstream information in society’ because they cannot access it. Writing about the need to reach Deaf people with HIV information, Soola (Reference Soola1991: 39) also assumed that they required special technology: there is ‘the need for a multiple-channel system approach … because only multiple but mutually reinforcing channels can effectively perform the task of mass outreach and influence required for appropriate knowledge and targeted behaviour change’. However, my study revealed that Deaf persons in urban Uganda accessed and used common communication technologies: mobile phones, television, print media and even radio to some extent. They differed from the hearing primarily in the way in which they used them, not in the kinds of technology used.
Jennie Carroll and colleagues (Reference Carroll, Howard, Vetere, Peck and Murphy2001) observe that different categories of people appropriate technologies differently depending on their individual needs. But appropriation is not only a matter of individual needs. I argue that it must be understood within a framework of social interaction. While the sociality of Deaf people shapes their abilities to access and utilize communication technologies, at the same time the technologies influence their sociality. Emphasis should not only be put on the technology hardware; the focus should also be on the social relations in which Deaf people are involved and how these shape the appropriation of the communication technologies they access.
AIDS education for all?
From the beginning of the AIDS response in Uganda, AIDS education has been fundamental and has relied heavily on communication technology. In the early 1990s, radio was the only medium that reached a wide audience. This was supported by ‘film vans’ that traversed the country, providing information on how HIV was spread. Since those early days, the emphasis on AIDS education has remained. At the launch of the ‘HIV/AIDS Message Clearing House’ in August 2016 in Kampala, the Ugandan Minister of the Presidency said:
One of the major drivers of the HIV and AIDS epidemic is inaccurate information. As a country that was once a model in curbing the spread of HIV, we must not negate the vital role information plays in influencing attitudes and behavior … It is therefore imperative that we pass on simple, clear and accurate messages to Ugandans if we are to reduce the spread of HIV.Footnote 2
Today, many more technologies are available to pass on ‘simple, clear and accurate messages’: television, a variety of print media, a multitude of FM radio stations, and mobile phones. Yet these technologies and the messages they mediate are unevenly accessible to Ugandans.
The efforts by hearing persons to help Deaf persons access information about HIV resulted in some creative ideas. In the process, certain Deaf persons felt that the hearing persons cared about them and at the same time hearing people found themselves to be useful to Deaf persons. The Uganda National Association of the Deaf (UNAD), the National Union of Disabled Persons of Uganda (NUDIPU) and the AIDS Support Organization (TASO) were some of the organizations that initially distributed HIV and AIDS DVDs targeting Deaf persons. The DVDs were made in Ugandan Sign Language and had subtitles. Deaf persons who understood sign language preferred DVDs because they could rewind them, which was useful in understanding messages very clearly, and DVDs could be shared with other people.Footnote 3 In another example, Deaf persons were joined by a mainstream organization to take the government of Uganda to court over inaccessible health information. The court case was still ongoing at the time I completed fieldwork.
Still, many of my informants felt that government, donor and NGO programmes ignored them both as individuals and as organizations. They stated that they had never been consulted by designers and managers of health communication messages, such as the Ministry of Health (MoH) and the Uganda Health Marketing Group (UHMG) – an organization responsible for designing and disseminating health education messages. Although MoH partnered with UHMG to make health information on HIV and AIDS accessible to all people, including Deaf persons, hardly any measures were put in place to ensure Deaf persons’ access to such information. Airhihenbuwa and Obregon (Reference Airhihenbuwa and Obregon2000: 6) note that ‘evaluating and redefining approaches to communicating relevant messages to different populations and the public at large [is a] critical aspect of HIV/AIDS prevention and care’. Yet organizations such as the AIDS Information Centre and TASO offer toll-free telephone services with apparently no thought to the need for similar services for those who cannot hear.
Lwanga complained that the creators of HIV messages consulted neither Deaf individuals nor UNAD. He reckoned that over 90 per cent of the messages on HIV and AIDS he had ever encountered benefited only hearing people. It was only text messages, which UNAD took from the MoH and TASO, that were accessible, even though they were not made specifically for Deaf persons.
Studying signing communities
The research was conducted in the greater Kampala area in the period 2017–18. It entailed interaction primarily with Deaf people using sign language. Thus, the study is not representative of all Deaf people in the country, since many live in rural areas and have less access to the variety of communication technologies discussed here. Many rely on ‘local signs’ rather than the more elaborated sign languages that are institutionally transmitted mostly in urban areas. The development of Deaf organizations, education, advocacy and interaction with donors has provided selective opportunities and has introduced inequality based on levels of schooling and fluency in signing. A Deaf elite has emerged in Uganda (Lutalo-Kiingi and De Clerck Reference Lutalo-Kiingi, De Clerck, Cooper and Rashid2015: 47, 55) to which people such as Lwanga belong. Although I attempted to work with informants from diverse backgrounds, they were all urban and most had some level of education at schools for the Deaf. While not necessarily elite, they are cosmopolitan and familiar with broadcasting, print and mobile phones.
There are several sign languages in use in Uganda; the most common is Ugandan Sign Language (USL), which is made up of common signs used in at least three of the four regions of Uganda. As a Deaf person, I am fluent in USL, a competence that greatly facilitated fieldwork and gave me insight into the communication issues being studied.
One of the main data collection methods was participant observation. Partly this meant face-to-face interaction at organized functions and informal gatherings. In most such interactions, sign language was the main medium of communication. I attended social events for the Deaf including church services, football training, Deaf youth open days, and workshops organized for the Deaf. I also joined social media groups including WhatsApp and Facebook groups formed and managed by Deaf persons. The most active WhatsApp groups were Kampala Deaf Youth Club (now Deaf Youth Council of Uganda), the Parliament of the Deaf in Uganda and Deafhood Uganda. These WhatsApp groups had conditions for membership. The Deaf Youth Council of Uganda was open to all young persons aged between seventeen and thirty-five years regardless of level of education, while the Parliament of the Deaf in Uganda group was restricted to those who were regarded as Deaf persons of ‘high integrity and must write good English’. The Deafhood Uganda group was open to everyone and had many Deaf pastors as well as older persons. These WhatsApp groups enabled me to observe how Deaf persons share information and how they support each other in accessing and utilizing HIV and AIDS messages. Being a member of these groups also kept me updated on forthcoming events and topical issues.
Through these events I got in contact and interacted with 112 Deaf persons. I followed five, including Lwanga,Footnote 4 more closely to gain insight into how Deaf persons use communication technologies, how they interact with both hearing and Deaf persons in the process of accessing and utilizing the messages, and how social networks are built and maintained. The five cases were selected based on gender differences, age differences, severity of hearing loss and differences in education levels.
I also conducted ten key informant interviews with members of UHMG, the MoH, HIV and AIDS health education organizations, UNAD, the National Association of Sign Language Interpreters and individual friends and relatives of Deaf persons. The key informant interviews were useful in gathering information about policies and guidelines on HIV communication and education, how the education messages were being designed, the nature of communication technologies used to disseminate the information, and how Deaf persons were excluded or included by the information technologies.
In addition, four focus group discussions (FGDs) with between ten and twelve Deaf persons were conducted (using USL) and recorded using a video camera. They generated information on beliefs, attitudes and perceptions about using electronic and print technologies, barriers to accessing the technologies and alternative strategies Deaf persons employ to access HIV and AIDS messages.
Broadcast and print technologies
The conventional information technologies – radio, television and print – convey all kinds of information, including messages about HIV. They are produced by hearing people for hearing and reading people, but Deaf people access them as well, to some extent. Radio is still the communication technology that reaches most widely in Uganda, as in most African countries. Deaf persons accessed radio information through hearing people, especially friends and family members. Those who were inquisitive noted when hearing people listened to the radio attentively. They preferred persons with flexibility and willingness to use local signs and write notes, which enabled Deaf persons to follow the radio information. Interestingly, they often found greater support from friends than from family members. A Deaf informant commented: ‘Family members feel tired of me. They start showing disappointment especially when I fail to understand something.’ One of the challenges was that it was not always possible to have a friend or relative readily available to help translate messages. Sometimes the Deaf person would have to wait until it was convenient for someone to give the support needed. In some instances, they would be told that information on the radio was not important and yet they could see hearing people giving it serious attention. A female informant narrated: ‘They [hearing people] listen to the radio for hours. I observe them enjoying every minute, but when it comes to sharing information with me, they just give me very little information like writing a paragraph or two sentences for me. I have no choice but to thank them and leave.’ Thus, access to audio technologies depended on the sociality of a given situation. Still, it was striking that Deaf people did learn something from radio, even though the medium was not directed at them. They received information indirectly, through the mediation of hearing people.
What was not possible for Deaf listeners was participation in a local radio public:
In a society where the spoken word and the activity of listening to the spoken word is highly valued and plays an important role in everyday life, radio broadcasting offers a particularly powerful means of creating a community of listeners because it allows them to engage in a spontaneous imaginary dialogue with radio speakers. (Schulz Reference Schulz1999: 163)
For people who cannot hear and must depend on others to summarize what is being said, a sense of personal connection, even kinship (Englund Reference Englund2015), with a radio announcer is unlikely. Even less possible is dialogue with an announcer and the opportunity to participate in discussion and debate with a radio public. As we shall see, it is mobile phones that can provide this kind of belonging and communication for Deaf people.
Television programmes supplemented audio material with visual information, including subtitles and sometimes sign language. In May 2012, the Uganda Communication Commission (UCC) issued a directive requiring all television stations to provide sign language interpretation services for Deaf persons. However, this directive was not adhered to; only three television stations (Uganda Broadcasting Corporation (UBC), NTV and Bukedde TV) complied, and then only during selected news broadcasts. In July 2018, UCC issued another similar directive, to which most television stations responded by December 2018. But they again mostly provided sign language interpreters only during news broadcasts, and some only once a week. So Deaf persons missed education messages on HIV and AIDS that were disseminated in other programmes.
My participants adopted different tactics in relation to television. Depending on how programming was done and the availability of sign language services, Deaf persons preferred particular stations. ‘Not all TVs [channels] have good sign language interpreters. Personally, I prefer UBC because the male sign language interpreter is very clear,’ a female Deaf participant said in an FGD. They waited for the programmes to be repeated, so they could increase their grasp of the information they needed or might have missed. In some cases, they recorded programmes of interest using smartphones and looked for a sign language interpreter or a friend to ‘interpret’ for them. Others sent text or WhatsApp messages to sign language interpreters or hearing friends to ‘summarize’ the contents in ‘Deaf English’ or sign language.
Thus, access to television was partly dependent on hearing people; they produced the programmes, made decisions about employing sign language interpreters, and sometimes helped Deaf friends with summaries. Still, television was more directly accessible than radio, which was completely dependent on mediation by hearing companions. Occasionally, Deaf people found television particularly relevant. Whenever a Deaf person was involved in a television story, they notified Deaf colleagues to watch the programme. I once received two WhatsApp messages from a couple telling me to watch them on NTV at 7 p.m. I replied that I could not make it in time as I was notified late. They replied that I had another option to watch them at 9 p.m., which I did. It was a feature story about a Deaf Uber taxi driver. It covered his lifestyle, including his family and how he had defied his disability to drive a taxi. In such instances, Deaf people appropriated television more fully – although, of course, the messages were about many things other than HIV.
Print is also a visual technology, of course, but, unlike television, it requires literacy. Many Deaf people in low-income settings never learned to read because they did not have the chance to attend school. Most of my participants in Kampala did read, however, and were able to decipher, if not always to understand, the considerable amount of AIDS education material in print. There were huge HIV and AIDS billboards, as well as posters, in many places in Kampala. Deaf persons reported that when well designed, with relevant pictures, billboards and posters were very useful in communicating HIV and AIDS messages. ‘My eyes are my ears,’ a female respondent said. However, many posters and billboards are designed in a ‘language’ most Deaf persons hardly understand, and some billboards confused the Deaf persons. One billboard by BulamuFootnote 5 displayed the words ‘I have no problem; I use a condom’. In the picture on the billboard, there was a young man and a young woman holding hands. The message on this billboard was (mis)interpreted by Deaf persons as promoting sexual activities. They knew that the posters were about HIV and AIDS but did not understand the actual message. Another poster with a picture of a young woman and a young man with the inscription ‘If it’s not on, it’s not safe’ also confused the Deaf persons. One of the Deaf young women asked: ‘What is it that has to be on?’ It was hard for Deaf persons to understand the message on such billboards; they needed someone to interpret and explain it for them.
Deaf persons preferred billboards written in simple English, in sign language grammar,Footnote 6 not pure English. English was more accessible than local languages because Deaf persons start learning written languages at schools where English is the main language of instruction. An informant commented: ‘Most Deaf persons, especially those who are born Deaf, start learning a language at school … At schools, they are taught in English … That’s why the majority of Deaf persons cannot understand their own written local languages.’ Posters written in local languages were ignored on sight by my respondents. For posters in English, some Deaf persons who could not read took photographs using mobile phones, posted them on social media, especially WhatsApp and Facebook groups, and asked ‘friends’ to help them understand the messages.
Some Deaf persons accessed information on HIV and AIDS through newspapers and magazines, specifically the Straight Talk magazine. Deaf persons were interested in reading the short stories in the simple English used in the magazine and enjoyed the drawings; these were more accessible than the English used in the daily newspapers, which was hard for the Deaf persons to understand. The magazine used a question-and-answer approach and focused on reproductive health including HIV and AIDS. Copies of Straight Talk were distributed free of charge, making it easy for the Deaf persons to access them. ‘I have been missing a lot of life challenging stories which are usually disseminated through radio so when I get a story about a person living with HIV and AIDS, I enjoy reading. I find every point new and interesting to me,’ a male respondent commented. Deaf persons received copies of Straight Talk from both primary and secondary schools for the Deaf that were specifically targeted by the distributors of the magazine.
Straight Talk was an exception among print media in that its style was accessible. This was not necessarily because it was produced with Deaf readers in mind, but because it invited a broad range of recipients, including children, youth and those who had limited education. In general, all the conventional communication technologies were oriented towards hearing people and required Deaf people to engage with the hearing in one way or another. Appropriating communication technology very often required mediation by hearing people – both unrelated others and family members. Deaf persons respected and acknowledged support from hearing persons, and felt that being accepted by hearing persons was very important in enabling them to appropriate communication technologies and thereby information on HIV and AIDS.
‘Old tech’ and relations to hearing people
Hearing family members are natural allies. Moreover, growing up in a hearing community, Deaf persons had hearing friends who did not know sign language but were still ‘very good friends’ (Ostrove and Oliva Reference Ostrove, Oliva, Burch and Kafer2010). They communicated through writing notes, home signs and gestures (Goss Reference Goss2003: 16). A hearing informant commented: ‘I have met many Deaf persons. Some approach me respectfully and my first question is always “Can you read English?” If yes, then I write down to ask how I could help.’
The quality of sociality between hearing and Deaf depended on willingness and interest on the part of the hearing person; my informants were very sensitive to such dispositions. Deaf persons develop what I have called ‘hidden criteria’ – non-systematic considerations they use to determine the kind of relationship to have with hearing persons. These included: respect while communicating to them; attempts to learn or use sign language; consulting them especially on matters that concern them; respecting their ideas and opinions; and inviting and recognizing them at public events. Hearing people also evaluated Deaf persons. They appreciated those who could speakFootnote 7 and were quick to relate to them, regarding them as ‘sharp’. ‘Imagine speaking words which you cannot hear or you never heard,’ commented one hearing friend of a Deaf person. Another hearing informant told me: ‘You have a nice smile. You are intelligent and smart [presumably because I can speak]. You behave well.’
While Deaf persons valued interactions with the hearing, they were sensitive to slights and any sign of disregard. A Deaf female respondent complained that she used to visit her hearing friend, eat at her home and even sleep there. However, her friend rarely visited her, did not sleep at her home, and did not accept any food apart from soft drinks. She concluded that those were indications that her friend did not really like her, so she reduced interaction and later the friendship ended. Deaf people looked for mutuality and reciprocity in their interactions with the hearing. As another Deaf informant expressed it: ‘I have had many friends both hearing and Deaf. I don’t like interacting with people who are only interested in hearing from me. I expect a friend to also answer my questions. I have seen some avoiding answering me and yet I answer all their questions.’ Deaf persons did not like interacting with hearing people who showed little interest or were unable to follow their conversations. There were even Deaf persons who intentionally ignored hearing persons, preferring ‘fellow Deaf’ because it was easier to communicate with them.
Deaf persons were disappointed when hearing persons, including sign language interpreters, answered any questions on their behalf. This was regarded as disrespectful and unethical conduct, seen by Deaf persons as a tendency of hearing persons to dominate them. A female Deaf informant commented: ‘I hate it. You cannot speak for me. You are not my spokesperson.’ A senior sign language interpreter agreed:
You are required to sign everything when you are with a Deaf person. Sometimes we take things for granted: for example, when you are asked the name of a Deaf person you are with, you may be tempted to answer, which Deaf persons do not like. You have to sign for him or her to answer.
In addition to mutuality and respect, patience and concern were necessary for effective mediation of ‘old’ communication technologies. Deaf persons said that sometimes their siblings and parents complained that they asked for too much information when seeking assistance to interpret messages. Deaf persons preferred that hearing persons translate audio information aired on radio or TV immediately. They wanted to receive the information fresh as it came from its source, because the later they got it, the more they lost out on the meaning; but most hearing persons preferred to ‘summarize’ the messages for the Deaf persons later. ‘They usually complain that they cannot enjoy radio or TV programmes when they are translating for me at the same time. It hurts me,’ a male respondent narrated.
In other cases, respondents said that their parents simply did not have or take time. ‘My parents are too busy. They come home looking stressed and tired,’ remarked a male respondent. ‘Dad comes home between 7 and 8 p.m. After bathing, he sits in the living room to take tea and watch news on TV or read newspapers. You can see he really needs to be alone resting. You fear to disturb him,’ a female respondent explained.
Spouses were useful in interpreting health education messages for Deaf persons. Interestingly, Deaf couples shared information more often than when one of the couple was Deaf; this was because of a shared use of sign language and shared interests as Deaf persons. ‘I and my husband are Deaf. We share all information we get. We also try to debate the information we fail to clearly understand, for example adverts on HIV and AIDS prevention and care on NTV,’ a female informant commented. Another married Deaf person added: ‘My husband is hearing. He usually listens to audio information at home, but he hardly shares. In most cases, it is me who has to ask him to “translate” for me. I’m not comfortable asking him all the time. He is also selective about what to tell me.’ Information was shared more in families where the wife was hearing and the husband was Deaf than where it was the other way round, perhaps reflecting a more general pattern of female subservience.
Experiencing what they called ‘marginalization’ within their families, Deaf persons built strong relationships with ‘friends’, who, in their view, gave them more attention than family members. ‘My friends are usually concerned about my access to information. They ensure that I follow what is being watched or listened to. My two sisters are always watching soaps, talking to friends or busy on their smartphones. They don’t have time for me. They hardly give me attention,’ a male Deaf interlocutor commented. Sometimes, family members also felt uncomfortable interpreting for Deaf persons in public places.
Some problems related specifically to the content of HIV messaging. Traditionally in many African cultures, it is taboo for parents to directly discuss sex-related issues with their children, a matter that came to the fore during the AIDS epidemic (Bushaija et al. Reference Bushaija, Sunday, Asingizwe, Olayo and Abong’o2013; Nambambi and Mufune Reference Nambambi and Mufune2011). In Ugandan societies, it is often the father’s sister (ssenga in Luganda) who is supposed to educate her nieces about sexual matters, as well as other aspects of virtuous femininity such as respect for husbands and elders (Tamale Reference Tamale2006). In contemporary conditions, and especially in towns, there may not be a father’s sister nearby; moreover, even when she is present, she may not provide the kind of information (for example about condoms) that young women want and need today (Nobelius et al. Reference Nobelius2010). As part of the response to the AIDS epidemic, some projects have recruited and trained women to take the part of ssenga, providing sex education for unmarried youth (Muyinda et al. Reference Muyinda2001; Reference Muyinda2003; Muyinda Reference Muyinda2004). My informants did not mention communication with a ssenga, but they were very clear about the difficulties of interacting with parents around topics concerning sex and HIV.
‘I once asked my parents about HIV and AIDS. They asked me whether I had unprotected sex and why I am asking them about this and not about my studies, which I performed poorly. I was disappointed. I will never ask them again,’ recounted a male respondent. Similar experiences were shared by others. ‘My parents are old and strong Baganda. Whenever they talk anything about HIV and AIDS, it is always about abstinence, so I do not expect any new information from them,’ said a female respondent. Parents communicated in the form of warnings. A female respondent commented:
Some time back, I was in the kitchen preparing juice. Mum came for me; we went to the living room where Dad was listening to the radio. Dad grabbed a pen and a book and wrote: ‘You must be careful with boys. They will give you AIDS. You will die. Many of your colleagues are dying.’ He pointed at the radio while raising his eyebrows. I felt confused.
When parents were busy, and given the sensitivity of discussing HIV and AIDS, Deaf persons depended on siblings, who were always with them and whom they taught sign language for easy communication. A male Deaf informant recounted:
I did not know that my brother would sometimes move with condoms in his pockets. One day as we were walking, I saw three beautiful Makerere University Business School girls. I signalled that the girl in the middle was beautiful. He laughed. Coincidentally, there was a large billboard a few meters away which was against having unprotected sex. He pointed at it, and he showed me a packet of condoms telling me that I had to be careful and use a condom if I am to engage in any sexual activity.
Communication here was facilitated by the conjuncture of seeing beautiful girls, the actual packet of condoms, and the relevance of the billboard.
As all these examples show, there are two major conditions for mediation and discussion of HIV information with hearing people. First, there must be a concerned disposition on the part of the hearing. They must be interested, they must take time, and they must respect the perspective of the Deaf person. Second, the two parties must have positions that allow them to communicate relatively freely about the matter at hand, as was the case with the two brothers, in contrast to the situation of children and their parents. Because broadcast media – and, to some extent, print media – require mediation, the nature of interaction with hearing people is crucial. Newer communication technologies, which for most people meant mobile phones, opened up other possibilities for Deaf people.
Mobile phones
Many of the potential benefits of mobile phones are similar for hearing and Deaf people. Miller and colleagues (Reference Miller2021) have described some of the more universal aspects in their work on the ‘global smartphone’. They argue that we must go ‘beyond anthropomorphism’ in understanding how individuals relate to their phones. These devices do not just take on the attributes of humans; they also have the potential to craft persons. They become a part of the person, something that extends capabilities, and whose absence has deep emotional consequences, as we saw with the case of Lwanga: ‘There has probably never been a device that could achieve this level of intimacy or continuity with a human being’ (ibid.: 228). Not only do they shape persons, they also constitute and transform relations, groups and networks. However, the question is whether phones have different possibilities for Deaf people. Miller and colleagues suggest in a general way that this may be so, noting that one of their researchers was blind: ‘The smartphone is a device that extends our capabilities not only to know things better than we can alone, but also to be more organised. This may be particularly the case for those with limited resources or barriers to using smartphones’ (ibid.: 228). Some of the possibilities exploited by my informants were quite unique.
Mobile phones allowed Deaf people to receive information directly without help from hearing people. Deaf people described mobile phones as ‘friendly’, and, like Lwanga, many made great efforts to access and preferably own a phone, especially a smartphone. Many Deaf persons reported that they had ‘recently’ bought a smartphone or were saving to buy one. Smartphones were an effective way of communicating and increasing social linkages among the Deaf persons themselves and with hearing persons. They were used to send text messages and photographs. The video functions allowed people to send films in sign language and to make video calls on WhatsApp and Facebook (although these were considered too expensive to use regularly). The potential for improving communication was great, but there were limitations to the use of mobile phones. As Ilkbaşaran found in a study of Deaf youth in Turkey, much depended on the textual literacy of the Deaf users and their interlocutors and on the socio-economic status of the users and their families (Reference Ilkbaşaran, Friedner and Kusters2015: 116).
Knowing an interlocutor’s name is fundamental to social interaction, but it is not always as straightforward for Deaf persons as it is for hearing people. Deaf persons used mobile phones to learn the spoken/written names of their friends. They often knew people by their sign names, so when such people sent greetings or information on their phones, the Deaf person would ask for their picture to be sent via WhatsApp. After getting a picture, they would save the person’s name in a way they could remember. One of my respondents saved my contact as ‘Ambos Short Smile Deaf’, and added:
It has always been hard for me to know written names of my friends because we use sign names. I could hardly know names of our relatives, including those living at our home. This is because such names are learned through hearing others saying them. It has always been embarrassing for me to ask those people their names. Nowadays, I just ask their phone numbers … To know their names, I initiate a process of sending mobile money. It displays the recipient’s name for my confirmation. I note down the name and I cancel the transaction.
Thus, mobile phones helped to organize information for continuing sociality.
Deaf persons used mobile phones as ‘notepads’ when interacting with hearing persons. In taxi parks, it was common for the Deaf to use their phones to write their destinations before boarding a taxi. While in the taxi, a Deaf person would communicate to another passenger with a text message: ‘I’m a Deaf person. We can communicate by writing here.’ Using such messages, Deaf persons sought assistance from the hearing to communicate to the taxi operators when they reached their destinations.
Parents used mobile phones to communicate with their Deaf children. A male informant recalled a disturbance in town: ‘Last year I was in town and there was chaos as [opposition leaders] fought with police. My dad sent me a message “ordering” me to go back home as soon as possible. He kept sending me messages asking about my whereabouts until I reached home.’ Parents also used mobile phones to communicate health tips and Bible verses to keep their children away from risky sexual behaviours, and children used the same technologies to ask questions of their parents.
Deaf persons used smartphones to contact their healthcare providers and sign language interpreters when making appointments for health services. As one explained:
There is a clinical officer who knows sign language at Mulago Hospital. He is very friendly and helpful. I first send him a message before going there and agree on the time and meeting point. He works in [the] emergency section, but when I go there he can help me in any section. I find him waiting or I wait for him.
For HIV and AIDS education messages, Deaf persons used the phones to take photographs of posters or billboards with HIV and AIDS education messages and used the photographs to ask friends the meanings of such messages. They also used smartphones to access the internet, especially social media. They downloaded short videos, including those on HIV and AIDS and particularly those in American Sign Language (ASL), since they could be accessed free of charge and were easily understood by Deaf Ugandans. They shared the videos among themselves through social media platforms, especially Facebook and WhatsApp, and discussed the content of such messages using mobile phones. A Deaf smartphone user explained: ‘I have opted to Facebooking where people post educative messages which are usually first spread audibly. I read to my best understanding and satisfaction.’ A hearing friend of a Deaf person also observed: ‘WhatsApp is really helping Deaf persons. Communication is becoming easier for them. They film themselves communicating in sign language and send the video to a Deaf colleague, which is not only fun, but it also strengthens the relationship.’
A female respondent noted: ‘I used to hate myself and disliked my phone whenever I spent a day without receiving a message but these days I read and reply to many messages on WhatsApp and Facebook groups. I feel connected to my Deaf colleagues, which is good.’ Without a phone, many of them said that they felt cut off from the rest of society, as did Lwanga on the day he left his phone at home.
However, there were financial implications, a point emphasized by Archambault (Reference Archambault2012: 405) in her study of Mozambique, but easily overlooked in research from higher-income settings. Smartphones were too expensive for many. Further, utilizing this technology cost Deaf persons more than hearing persons. The cost was in terms of accessing the internet and sending text messages to share information for translation. It was common for a Deaf person to send a text message, and then to send reminders if the recipient was slow in responding, while a hearing person could just make an audio call to find out what was happening. Downloading videos and pictures also takes a lot of mobile broadband system (MBS) data, and therefore is costly.
To reduce the costs, many Deaf persons subscribed to cheaper service providers, while senders and recipients of messages were asked to use telecommunications services that could easily be accessed, even when their services were limited in some instances. One of my informants replied to my MTN message: ‘Do you have Airtel line? Sending an SMS from Airtel to MTN is very expensive.’Footnote 8
In sum, mobile phones were useful for Deaf persons in updating themselves by reading posts in various social media groups and then debating ideas by exchanging text messages, including on topics of health, HIV and AIDS. Mobile phones improved their communication abilities, increased their access to information, and changed their communication practices. Unlike broadcast media, especially radio, mobile phones were not only used to communicate with the Deaf and the hearing, but also as a means of building and extending social networks and strengthening social connections and one’s identity as a Deaf person.
‘New tech’ and relations to other Deaf people
Although there were exceptions, kinship and physical proximity in the home did not necessarily guarantee willingness to help Deaf people access audio information or to discuss HIV prevention. Sometimes Deaf individuals disregarded those who were near them and spent time and money to reach out to distant people with whom they could communicate better. In this they seemed to follow a pattern identified by Friedner (Reference Friedner2015) in Bangalore: those who had learned sign language tended to turn away from their families towards those with whom they shared a language. Friedner saw the acquisition of sign language as a process of conversion to Deaf sociality: ‘They are learning language for having complex conversations about important social and moral topics, and they are learning practices and processes for becoming part of Deaf sociality’ (Reference Friedner2014: 43). However, withdrawal from relations with hearing people, kin or non-kin, is not so clear-cut from the few studies of deafness in Africa (for example, see Beckmann Reference Beckmann2022). Research in an African location where there was a high prevalence of deafness and widespread knowledge of a local sign language shows that the pattern of withdrawing from kin sociality does not hold (Kusters Reference Kusters2014). My research suggests that the strengthening of biosociality (relations based on a common biological or therapeutic condition (Rabinow Reference Rabinow1996; Friedner Reference Friedner2010)) does not necessarily come at the expense of relations to hearing people.
Deaf people interacted with one another in their own organizations, including football clubs for the Deaf, and on occasions such as Deaf open days. As elsewhere (Kusters Reference Kusters2014; Friedner Reference Friedner2014; Beckmann Reference Beckmann2022), churches were key institutions. My study participants favoured Immanuel Church of the Deaf, Namirembe Cathedral Church of the Deaf, Old Kampala Catholic Church of the Deaf, and St Luke Church of the Deaf in Ntinda. After meeting in such institutional settings, sociality continued less formally in DBC, the Deaf Broadcasting Corporation. Unable to access BBC radio, which is extremely popular in Uganda, Deaf people enjoyed their own news channel face to face in sign language. Importantly, interaction in person was supported by and intertwined with virtual interaction. Facebook and WhatsApp exchanges informed people about in-person meetings, and when DBC was convened, information from virtual sources was often discussed. DBC was not one formal organization, but different networks of Deaf people communicating directly and through the medium of mobile phones. In some ways, the ironic play on mainstream broadcast media is similar to the term ‘Deaf TV’ used by Deaf Turkish youth when referring to Facebook pages that provided sign language communication and thus offered alternatives to standard television, which did not have captioning (Ilkbaşaran Reference Ilkbaşaran, Friedner and Kusters2015: 120).
During DBC sessions, Deaf people presented many issues that were basically about information they received but failed to understand, such as WhatsApp messages, pictures or newspaper pieces. Educated Deaf persons would read and interpret for their colleagues. DBC also helped to address social inequalities, marginalization and stigma, as it enabled Deaf persons to access information that would otherwise be inaccessible. DBC was useful in reinforcing behavioural change among Deaf persons through giving details about why certain behaviour must be changed or adopted. While hearing persons could access information from different audio sources, DBC compensated for information missed by Deaf persons.
Lwanga, introduced above, was an active member of DBC, which built strong ties between him and fellow Deaf persons. It provided him with an opportunity to get updates and for him to update fellow Deaf colleagues. They would then spread information received from DBC to other DBC gatherings; within a few days, information would reach hundreds of Deaf persons around Kampala. One of Lwanga’s sixteen WhatsApp groups was ‘EAC DBC’ (East Africa Community DBC), whose members come from Rwanda, Kenya, Tanzania, Uganda, Burundi and South Sudan. Membership is restricted to ‘Deaf people known to have “top” information in East Africa and who must read and write basic English’. They must also be ‘funny and active in the Deaf movement within their countries’. Thus, the possibilities for sociality that opened up with mobile phones and the internet could also be exclusive, separating elite Deaf people from others who were less educated, less informed, and less able to use the newer technologies. Some DBC networks had characteristics resembling those of the ebimeeza (round table) meetings described by Brisset-Foucault (Reference Brisset-Foucault2013), in that they valued education, fluent communication, being well informed and sharing information with others. The more cosmopolitan members took the lead. Like the ebimeeza, which were convened in person and broadcast on radio, the DBC combined different media forms: face-to-face signing, mobile phones, and even discussions of information from other media sources.
It was clear that being physically together did not necessarily generate trust among the Deaf people. Some Deaf persons would depend not only on DBC; they would use their smartphones to send pictures of billboards to distant friends for interpretation despite being with other friends physically. This suggested that Deaf persons can be closer to someone socially but distant physically, or close physically but distant socially, as argued by Amit (Reference Amit2015). This was attributed to the trust and cooperation the Deaf persons had built with those ‘distant physically but close socially’ over the years.
Mobile phone use must be understood holistically. It is not divorced from the ‘old tech’ modalities of communication, in that Deaf people used their phones to get assistance in understanding messages they saw on television or in print. Nor is it only a way of enhancing communication with other Deaf people; it facilitates interaction with hearing people as well.
Conclusion
In order to understand how Deaf people appropriate HIV and AIDS education messages, it has been necessary to consider their perspectives on communication technology more generally. From their accounts and my own participant observation, it was clear that social interactions influenced access to technologies, which in turn affected their sociality. Thus, a fundamental insight of my study was that technology and sociality must be considered together. An important issue that emerged from this research is the balance between Deaf sociality and sociality between Deaf and hearing persons. More research is needed on this question and more research is definitely required on the impact of new communication technologies on these forms of sociality.
My approach here has been simply to divide the communication technologies through which Deaf people access information on HIV and AIDS into ‘old tech’ (broadcast and print) and ‘new tech’ (mobile phones). The ‘old tech’ methods generally require more mediation by family and friends in order to be well understood. While call-in radio shows, which are very popular in many African countries, invite a certain amount of participation by listeners, Deaf people are unable to join in radio conversations. Mobile phones, in contrast, give possibilities for dialogue, for questions and answers, and for independent communication not mediated by another person. Deaf persons can initiate communication, for example by texting someone with a request to explain a billboard message. Of course, the usefulness of communication technologies is differentiated. Those who live in Kampala, can read English, use a smartphone and are fluent in USL are just one example of the appropriation of HIV information.
I have argued that my signing Deaf participants did not turn away from interaction with hearing people just because they did not share a common language. Yet a shift seems to be occurring. ‘Old tech’ communication was premised on hearing conditions: messages were formulated by those who could hear, for others who could hear. Mobile phones facilitated communication between the hearing and the Deaf. Even more importantly, they enhanced communication by and for Deaf people, including communication about HIV. In the process, relationships between Deaf people were strengthened as well.
Acknowledgements
I am grateful to all of those who willingly participated in my study and shared their thoughtful reflections. Reviewers provided valuable suggestions and Susan Reynolds Whyte helped in revising the article.
Ambrose Murangira is a PhD student at the College of Health Sciences, Makerere University. He is also a Disability Inclusion Specialist at Light for the World International and a co-initiator of the ‘Disability Inclusion Facilitators’ model, which trains young persons with disabilities to become experts in disability inclusion.
