Tom Muyunga Mukasa is originally from Uganda. He was resettled as a refugee in the USA. He is currently in Kenya. Tom is HIV Care and Global Health Specialist; Manager of the House of Rainbow HIV/AIDS Protection and Advocacy Consortium; and Co-founder of Advocacy Network Africa (AdNetA). He works towards enshrining human dignity by leading a number of campaigns. These are aimed at refugee integration and protection in host communities, the elimination of violence against women, the promotion of wellness that integrates Universal Health Coverage (UHC), and at ending TB, HIV & Malaria by 2030. AdNetA is also active in the campaign to end COVID-19.
- Tell us about yourself and about what you’re doing and what you’re working on and how, during this COVID-19 lock-in.
Thank you so much. Right now I am in Nairobi. In August 2019, I came here to Kenya as a student volunteer from St Mary’s College of California, USA. I went to do volunteer work in Nyeri Town, which is about 200 kilometers from Nairobi. I lived at St. Mary’s Boys’ Vocational Rescue Centre and Secondary School up to November 2019. This is a combined vocational and rehabilitation school for boys aged 3-20 years. I facilitated the establishment and development of community organisation frameworks that enable Lasallian Volunteers to participate in effective change activities during their African experience tours. (La Salle, or the Lasallians are a Catholic order established in 1679 by John Baptist de La Salle. Today the Lasallians minister to around 900,000 students in universities, schools, educational and welfare institutions in more than 80 countries all over the world.)
While working in Nyeri, my own focus was on the Secondary School and how its communities could engage the large youth population in sports, livelihood, vocational skills and other capacity-building. Together we came up with tailored programmes to provide younger people with opportunities to improve healthy and purposeful living, self-esteem and to avoid drug-use due to peer pressure and other factors. The Lasallian volunteers helped facilitate these sessions. I developed a strategic plan for 2019-2025 hinged on economic development, orphan support and rehabilitation. We presented this to the local government and they promised to support it fully. Alongside my volunteering, I was engaging in my own research work in drug-use disorders, conducting fieldwork in three informal settings in Mountain Kenya, Eastern and Central regions. Into this research, I incorporated queer refugee issues. I developed my findings into abstracts, which were accepted by the International AIDS Conference 2020 among other conferences. I had worked on preparing twelve presenters, all, like me, queer refugees. All abstracts were accepted and we were rearing to go! But… COVID-19 restrictions are now in force here in Kenya and the conference will be held via virtual sessions.
Fast forward to lock-down, or lock-in here where I am now, in the Matasia zone of Ngong in Kajiado County on the outskirts of Nairobi. It is one of the largest, most urbanized and most densely populated areas of Kenya. Right now I am managing a community health awareness programme run by volunteer refugees. Some refugees are now resettled in Kenya, others are waiting to be resettled in a third party country. But, they agreed to work with me and have brought into the campaign their lovers, friends and acquaintances. Our campaign is growing in numbers! At the core are people I had earlier identified as key-Informants. While we were still able to do research work or data collection in the field, I found 7 persons living with TB whom I immediately connected to health care facilities. I had some little money on me and provided them with a month’s supply of food. All 7 are now 4 months along a steady healing process. These 7 enabled us to penetrate deeper into their networks and we have linked more and more TB patients to care and hope to continue with this.
As a trained infectious diseases specialist, when I heard of this particular kind of infection, rumbling across from China to other places, I knew I had to act fast. There was no way Africa would escape! Given the health care facilities as the risks posed by increased hospital attendances, there was much to do, and fast. This is much on my mind. We have been able to secure 4 months’ medication supply for the TB patients. Those who are HIV positive were also given the same amount of medication. This is called aligning medication supply. I connected patients to AMREF, Red Cross, different CSOs and local government hospitals where they are now getting more support beyond what I could provide.
I am now embarking on training mobilisers to become Anti-TB Champions and I am integrating COVID-19 Response and Prevention into this campaign. What I have not yet mentioned is that I am connected with the Switzerland-based WHO division on TB. I engaged with them and advocated on behalf of TB patients back in November-December 2019 already. I did it because I felt my voice could add to finding ways to meet their needs. I even wrote a concept note on TB prevention. I felt I owed the communities I had visited during data collection. I wanted to give back in a small way. So, I have designed what we call the TB Prevention Communities of best practices. This is an iterative model with 15 steps that is both pedagogical and a heuristic.
The best practices are hinged on: Identification, Participation, Access, Hygiene, Adherence and Self-Esteem (IPAHAS). When a patient is identified, the Anti-TB Champions catalyze full participation of the person to be evaluated for TB, going through all the nine yards from testing to taking medication for the first crucial 8 weeks and then beyond. The Champions help with access to housing, nutrition, transport and with medication not being disrupted. Given the present situation, we have had to adapt, so I have shown them how to use WhatsApp groups and Facebook or Zoom to communicate, inform and educate.
Most of our TB and HIV patients live in one-room houses. We got lucky in that the organisations we linked patients to have provided food rations, masks and aromatic detergents, which they can use to wipe surfaces, clean toilets and bed pans or night pails. The practices for helping people with TB and compromised immunity also help with limiting the spread of COVID-19. I have come to note that COVID-19 restrictions are now making it easier for TB patients to be less stigmatised. Wearing masks no longer leads to stigma: it no longer signifies disease but precaution, self-care and care for others. The sweet-smelling detergents have made the dwelling places less unpleasant. Food is shared around in these hard times – because life is restricted and hard for everyone just now. (I have written a short perspective report intimating this tendency.) I am sure the Anti-TB Champions continue to be motivated, not least because they are receiving food rations too and they are helping one another, as well as relatives and friends.
Personally, I am staying in, as instructed. I am concentrating my efforts and trying to keep expenses to a minimum. I am training my teams via zoom, video calls and email instructions. I continue my work as Social Justice Practitioner in whatever way I can. Motivated by the UN SDGs, I focus on a range of community activities, focusing most on conservation, Universal Health Coverage (UHC), elimination of violence against women and on ending TB, HIV, and Malaria by 2030. These are all connected. But now, I am also integrating COVID-19 into my work, because this is pressing. I make virtual work activities and share them online. I have become busier while I am following up my patients from home.
- You have added COVID-19 to your earlier campaigns which included preventing transmission of TB, HIV and Malaria. You also have years of experience of advocacy for LGBT rights and you are passionate about ending gender-based and sexual violence. Tell us more. What drives you and what do you do?
Ha-ha! Professor Johanna, I am humbled by the statement and question. A long time ago in Uganda as a younger medical student I volunteered with the Rotary Club. We were taken to an island far into Lake Victoria to popularise immunization and digging and using latrines. You know, we were young and from the ivory tower. It was supposed to be a one-time thing. We were given this opportunity to see the world’s realities and to relate them to our book learning.
I was touched and after my return asked to be included on a list of those who would volunteer regularly. Little did I know that this was preparing me to polish my social face of medicine! This was a time when almost everything was ‘medicalised’, if you get what I mean. There was an expectation that medication was the solution to so many things, a whole laundry-list of issues. Not all of these, however, actually required medication (tablets, drops, operations…) at all. They were health matters but what they needed was something else. I’m talking about such things as domestic abuse, sexual and gender-based violence, husbands using up their wives’ savings and giving the lame excuses of ‘I am the man of the house: I do as I like!’ I was a witness during a meeting in which a woman had brought a case against her husband. Guess what it was about, Professor? The woman had come to report the husband for not beating her when she made any mistake like when they had just met! No, seriously Professor! Her expectation was that when your husband beats you, it means they love you and when they ignore you, it means they have someone else who is special (enough to be beaten).
I come from a family of nine mothers and many children. I know so many other families like mine. I think I was made an activist subconsciously, without realizing it, through my close relationships with women and children, who often suffer the brunt of patriarchal violence. Or, maybe, I am correcting things, or reconstructing things and it is just plain rebelliousness on my part! My passion about ending gender-based and sexual violence is rooted in what I grew up seeing at home, in my communities, in wider African society. It is rooted too in my joining the organizing committee of a San Francisco-based Women’s March, where I have served since 2013.
Professor, knowing you and how you guided us in sharing real lived stories [for the report, see here. Tom is in the picture, wearing a crown], I am dwelling so far on the positive side of things. Let me share how it might have begun as well. I knew I had to be part of the solution to put a stop to the mentality that women are regarded as inferior. But funnily enough, in my earlier days, being male, not White, and without money, in Africa, I met with the most vehement of barriers. Being a male, people, including women, called me names whenever I appeared in meetings on women’s and girl children’s rights. You should have been there! But hey, they did not know me that well. I am a very determined and different male but they did not know this at first. So, I just went on doing my work. Well, to cut a long story short I am here still and I am a social justice practitioner among many other hats I wear.
Thank you so much for supporting my work. You know and have seen me at the frontline where you have been as well. I am sure all your faculty colleagues are ‘radicals’ (ooooops, sshh, do not say I said this!) But, what I mean, is that on behalf of many others, thank you so much for coming into our lives. You asked what drives me. I enjoy passing on skills to others and to see them turn into self-driven actors too. This takes patience and guidance but when results start showing, I go to bed and sleep like a log. I have seen the people I train become the better version of who they could be. I have seen transformation manifest before me. I have witnessed people who gain the skills, change into adopting healthy practices and behaviours. They turned out to be recognised and this increased their being dependable and admired by others who work with them. It is this that drives me! Thanks.
- How you bearing up and what is helping you, or would help you, most?
Professor, is this a trick question? But, let me answer it as I feel it in my heart and belly. I am scared. My life has had so many turns and all of them following each other in sequence. I am not a biblical Job! I am just a Black male striving to be good. I want to be a scholar and not a raw field epidemiologist, for crying out loud. I made a decision to improve myself scholarly-wise and chose to take on the discipline of Political Science. I hope to complete every requisite and to be taken on to a PhD programme (they write ‘program’, that other side of the Atlantic) at Princeton University. I was given a promissory letter and the conditions I need to fulfill. Part of my coming to Kenya to do community work, was to prepare me and give me an advantage to get into Princeton. I am competing with 45 others but I am not scared at all.
But now, COVID-19 has come along. I am wondering how I can return to the USA, say in December 2020! These things go on and on and they require vaccines. Nothing else can hurry things along! For now, I have tried to put all my worries aside and have engaged in anti-infection activities with which I am so very familiar, given my earlier, medical incarnation. I am helping a team here and more people, too, via phone. I have written perspective reports which are read widely and I am so happy there is a sector that asks for my opinion.
Professor, I know I am going to be here until December. I have given myself that period. Keep the Shiloh Project moving please, we read it here. By the way, I also follow your University of Leeds Faculty colleagues via Twitter. I like the themes you cover. They are so heart-tugging, they make one realise how comfortable they have been to the point of exuding a self-righteous air about them, and they are so ‘radical’. I realise I am slowly learning to effectively ask questions that make our society more involved in healing. Maybe one day I shall ask to come there as an exchange student to sit down and get trained or just converse! Thank you.
[From Johanna: Tom, we need you here! You could give us a good dose of reality and maybe wake us up to and make us embarrassed about our self-righteous airs. Thank you for giving some insight into much greater struggles than most of us contend with. If you do come over as an exchange student, I will keep you busy with speaking engagements. Be well, be safe, and thank you so much for your words.]