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TESTIMONIES

LIVED EXPERIENCES

Our testimonies

Living testimonies

chairperson

I was born Robinah Nakanwagi in 1964 to Mr. Ezra Lubega Salongo and Margret Naguta Nalongo in Bugerere, a rural province in Central Uganda. Born and raised very poor by a mother who lived with an epilepsy-like neurological condition, a grandmother who was blind, a big brother with severe mental illness and a sister with
physical disability due to polio, our home was feared and pointed out in all the villages around. Being the eldest daughter of my mother, a lot of responsibility came onto my shoulders while I was still very young. My grandmother needed constant assistance and my mother would frequently be unable to handle the ordinary
running of a home due to the seizures. Very early in life I experienced carers’ burden, that unrelenting mental and emotional distress. At the local primary school, I proved very capable in class and always came first. Completing primary seven, I scored very high and from an unknown village school, was admitted to Gayaza High School,
a leading girls’ secondary school in the country.

GAYAZA HIGH SCHOOL EXPERIENCES
Gayaza gets children from all backgrounds and I found myself mixing with various classes of girls, some very rich and exposed, with all kinds of lifestyles. With all the weights from home hanging over me and now growing into an adolescent, I couldn’t understand my mind, body and feelings. I felt no one could understand me either.
I became a great loner. Much of the time I would be holed up in the chapel trying to sort issues with God or under a tree. Sometimes I would keep in class pretending to be reading. To be fair, Gayaza had a lot of extra-curricular activities like sports, and learning to play the guitar but I stayed away from them all. All my report cards said I was reserved and unsocial. I often experienced a lot of un-explainable body weakness. There were times when all my free time would be spend in bed, but the sleep I got never refreshed my body or mind.

DECLINE
I started off in Gayaza always leading in class or among the very top. Then half way down my six years’ stay, I suddenly dropped from the top and now began coming last. I started episodes of crying out of the blue. I would just begin sobbing even if there had been nothing done to me. The loneliness, the plummeting grades, the crying, all should have pointed to an inner crisis. However, the school only prescribed painkillers for me which could not serve my specific need at that time.

UNIVERSITY
I joined Makerere University at the time when the guerrilla war cut off home. My father, leaving me at the university was relieved that at least I was safe in the city. He left and I was on my own, with no source of personal necessities whatsoever. To fend for myself, I began doing simple house chores for whoever needed the services and selling simple handcrafts.
The daily stress over my needs, the mental and emotional weights, and the worry over my family, all now came in to push me towards the precipice. The friends and community around could not easily recognize the danger signs because they hardly had any idea about this condition. People who cared thought I had a spiritual problem. All they could do was pray and try to be helpful physically and materially. I grew even more isolated and started wishing that I could die.
LET ME DIE
Finally, one day I determined that it was time to end it all. I packed all my property, ready to be carried back to my village after my planned demise. I stopped eating and attending lectures. For many days I did not leave my bed. However, I made one “good mistake”, I would take time to read a bit of my Bible. This is how I stumbled on a verse in the book of Revelation that says that “whoever overcomes will sit with me”, the lamb of God. A ray of light flashed into my inner darkness. I also remembered my old school motto in Gayaza, “Never give up.” Now I was very weak, having stopped eating a long time ago. But I gained the courage to struggle up and face the challenge of life once again.

WORK
After graduation I got a job with the Deliverance church Medical facility, JOY Medical Centre. Here I would sometimes go for many days without uttering a word, ignoring all attempts to get me talking. It seemed like my brain could no longer process an answer to even the simplest of questions. When I later got married to Billy Melchizedeck, becoming Mrs
Alambuya, the pendulum now swung to the other extreme. I was newly married, had gained social status and would soon get a baby. I felt like I was in the clouds, I was so happy. However, I lacked sleep with the mind now hyperactive, another problem came that none of us recognised. I began to experience hallucinations, with normal objects becoming very strange and frightening to me. One day our home wall clock suddenly twisted into a strange, terrible creature; I seized it and smashed it on the floor, killing it like a snake. Alongside visual and audio hallucinations, even my sense of smell
got distorted. In my uncontrolled state, I could attack an innocent person. One day I threw the church drummer off his seat, calling him names, declaring him too unholy to play in God’s house and announcing his immediate replacement-the baby on my back. This kind of behaviour hurt many relationships. People got talking about my erratic state in a stigmatising way; some declaring me mad, others thought I was reacting to a hard-tocatch wife-beating husband. Others took me for a medium, since I later learnt that I could speak stuff out of people’s experiences. A few declared me holy, so close to God that I knew human thoughts.

MUM DIES
Losing my mother to cancer triggered another crisis. She had been very ill and I chose to seek God for her healing, I undertook to pray and fast very extensively. No one cautioned me, I sunk into a deep depression. With her passing of I became the one to take over the care of my siblings, two of whom also had mental challenges. They all gathered
in my home, and yet I was unemployed because I had lost my job earlier, and now the fear of stigmatization made it difficult for me to get a job; I couldn’t see a future and would at times cry all day. My husband and children became my only love point and I focused on them. When my husband, a pastor was around I would put my head on his lap and simply cry. People said he should send me to Butabika hospital for the mentally disturbed, but he was very loving and understanding. I owe my recovery journey to God and to my husband. He always told me, “Robinah, I love you and the Lord will sort things out for us”, giving me courage for another day. I love we have raised together four precious children.

FACING STIGMA
I had lost my baby girl and then suffered a miscarriage, all this drained me a great deal. People’s comments added to the stigma I constantly felt. In the end I made a choice; I would take the stigma head on by coming out openly. I began to tell out my story. I shared it with families, moved to village then district, then to national level, continental level and global level.
As chair of the Pan African Network of people with Psycho social Disabilities, I presented a paper in Malawi on the human rights of people with psychoscial disabilities and the service user movement in Africa 2011. I have been a keynote speaker in the WHO lauch of Quality Rights Toolkit (New York 2012), the UN High level Meeting on Disability and Development ( New York 2013), and interfaced the UN CRPD Committee in Geneva in 2015 and 2016. I have brought out the issues globally, https://vimeo.com/channels/whoqualityrights. I am telling the story from a lived experience and I will not stop telling my story because it inspires hope with the power to transform. I want to assure the whole world that it is possible to recover from ill mental conditions, build resilience and live positively. People affected by ill mental health need a network of love that supports them to live a normal life, making a meaningful, fruitful contribution to society. I am a living testimony!

My names are Daniel Iga Mwesigwa. I am a person who has lived positively with psycho-social disability since I was 13 years, now am a senior citizen. I have gone through thick and thin and have managed to come out. That eventful day happened just after my exams in the first year of high school (senior one) and I had gone for holidays. My parents began noticing some weird behaviour; lack of sleep, no appetite and becoming solitary so they for medical attention for me
in Mulago Mental Clinic, Ward 16 by then and my neurologist was the late Professor Kiryabwire. So we went on like that, I was in and out of Mulago every holiday. Stigma at school when the students came to know, they called me M.C (Mentally Confused) and even one insensitive teacher, he called me Confused Confuser and many other things because of the drugs, which you know, give a lot of appetite so they would call me “Chief Binariser” because, you know, I had to get extra plates
of food to see that the body demands are cared for. So I went on slowly until I made it and I became a medical professional. So in that way, there is a lot of problems I faced with the police, one time when I was referred to Butabika yet I had never been there so I escaped and was captured and taken to Mbuya military Barracks, thinking I was a guerrilla fighter and I was badly treated, however, they took me to Jinja Road Police Station where I stayed for two weeks until I started complaining and thereafter was referred to Central Police Station special branch and that is where
the investigators came to know. They asked me about my life and later called my parents to come to my rescue. So three weeks in a police cell is not an easy thing, we used to fight with inmates, you know this and that and so my health was injured. So I advise our security organs that whenever they come across people with that kind of challenge, instead of taking them into cells for custody, they should take them to hospitals or health facilities for help. And thereafter, when I graduated, I worked at Mengo Hospital, it was a very big hospital and I was passionate about caring for children, I never knew how to control myself and I ended up burnt out, so when I asked for a rest for three days, the then Deputy
Medical Superintendent refused to give it to me, saying, “Well Mengo hospital doesn’t employ people who don’t work,” and I also said that I don’t work for people who don’t consider my life so me I’m going to rest irrespective of anything and three days later I come and found a termination letter. When I received the letter I put the medical superintendent to task to clearly specify the reason for my termination as“…on health grounds…” I particularly demanded that the reason for my termination should be clearly stated so that people would know that I’m a human being. I think that one brought sense, that activism brought sense into the Medical Superintendent and he gave me the rest. I began thinking about our rights, and that’s when I went to the Minister for Disability, approached her and said, “Well, you’ve done well for the sensory, physically disabled and others, but now how about us, do you know that we fall in your constituency?” It was hard, it was a new phenomenon. She told me to write to the U.N. about rights. But later down the road, she drove to Mengo Hospital and looked for me, that’s when she had been called to inaugurate Mental Health Uganda as a national organization. So
she told me, “Your question maybe this organization will answer, if you want you join them if you don’t it is your will,” and so I joined them and became the pioneer National General Secretary where I was next to the World Network of Users and Survivors of Psychiatry.

We went to Denmark, there I bought the idea of coming up with a Pan African Network, because there was already a European Network of Users and Survivors of Psychiatry, the Americas, New Zealand, but in Africa we were not coordinated, so I came up with an idea of the Pan African Network of Users and Survivors of Psychiatry which we cofounded with Musa Ali from South Africa and Janet Kamugacha from Ghana.

We went on and later, after five years, we revisited the idea of the Pan African Network whereby RobinahAlambuya was elected to be our chairperson, the president of the Pan African Network of Users and Survivors of Psychiatry. I was co-opted and later they came, the negotiations of the U.N CRPD, then United Nations Convention on Rights of Persons with Disabilities, of which I was the only participant or delegate from civil society from Uganda, from the third adhoc committee meeting to the eighth adhoc committee meeting which we concluded. There was a lot of networking and you know the other disabilities and there I worked hard and was nominated as one of the members of the steering committee or the committee caucus. So in the U.N we used to listen to the states then as a steering committee we discuss
and lay strategy for the next morning and it went like that and I think it went on well.

We managed to put in Article 12, full legal capacity which was important for us because the law, especially in Uganda where we were called people of unsound mind, we were killed legally. It gives us the right to full legal capacity without any reservation. Thereafter, we worked with NUDIPU to negotiate with government to sign and ratify the convention.
Ten years down the road, they made an initial report to the U.N. in Geneva, Switzerland, we also went as civil society with an alternative report, and noted the Gaps of the audit, but they still could not act, therefore I was tired of the word lobbying and advocacy as if the rights were just begging for them and yet they were inherent. So I got in touch with CEHURD, they are lawyers who are more focused about health so I swore an affidavit and we took the Government of Uganda to court and I thank God that the judges ruled in our favour and today it’s called the Igavs Attorney General case which has become a precedent, even in the law school in Makerere it’s taught and I think there is a paradigm shift
of thinking we are bringing to the world, that we are all equal and deserve equal rights, irrespective of our disabilities, we just need our dignity preserved and to be promoted and just reasonable accommodation at places of work, be included in all agendas of development, sustainable development goals which government brings so that we are dreaming of a world of inclusion, meaningful inclusion of people irrespective of status, disability, religion, tribe or anything of the sort because we are all human beings and so it’s my urge and call for everyone to embrace this.

Thereafter we formed peer support groups, Heart Sounds Uganda, we were doing well but because we were professional founded, still they disorganized us and we began quarreling with one another and so it broke down. But later we thought we could not kill this and came up with My Story Initiative. So why do we call it My Story Initiative? Because these stories of ours, our success stories which can encourage our peers so that they can also make it, and it is these stories that change mind-sets, stereotypes and negative attitudes, to know that we are also human beings and can deliver
in all aspects. So that is my story…………!

KWIZERA JONATHAN CONRAD

I was born on 05/05/1991, at 8:05 p.m. I always think to myself that there is some significance to that time. My mother told me that when I was born, I didn’t cry and that I had to be patted on the back by the midwives in order to cry. I don’t remember too much about my early childhood other than that I was happy; I loved everyone around me, especially my parents. I also remember
an incident in Primary 2 where I was very confused, I was always temperamental yet really quiet, and that sparked off problems,
first with peers and then teachers, who had appointed me a group monitor, then my classmates teased me and I ended up getting
punished for their misbehaviour. This is one of those vivid memories that keep flashing in my head from time to time. The first time I remember exhibiting any signs of depression. There is this thing about my journey with bipolar disorder; one dreadful year is often followed with one tremendous year. My Primary 3 was awesome, my grades were great, I had great friends and I can’t remember anything going wrong that year. Primary 4 wasn’t bad either; I had changed schools, but had no difficulty blending in.
Then Primary 5 came, and that’s when things started getting difficult.

My father’s temperament changed, and he got harsher with me. I was so afraid of him that every time I got a report that was below his expectations, I hid it from him or destroyed it. I was lucky to have an understanding mother, and I always showed her the reports before hiding or destroying them. Interestingly, I knew, even back then, that I couldn’t maintain the lying, but I was so afraid that I just wanted to buy a little more time without violent punishment. He finally found out and I learned the important lesson of not lying despite the circumstances. Primary 6 was a great year, because my father was in a sombre mood I suppose, I did really well that year, and even got a promotion to a more challenging class the following year, something my father always wanted, which is probably why I was happy about it. Studying there at a vital time in my education wasn’t easy, because it was hard to blend into that environment, and at the same time, my father’s mood had changed, yet again. I was in such a constant state of fear of apprehension that I went quiet.
I barely spoke to anyone and when I did, it was in such differing tones that I couldn’t even describe whether I was soprano, tenor or alto. I isolated myself so much that I developed an intrinsic safety net of what I called ‘friends.’ I had voices constantly speaking to me, and each other in my head that, much as I was silent on the outside, within my mind I was constantly analysing things, past, present and future outcomes. I sometimes attribute this to the one gift I was proud of since childhood which is writing.
By the time I was done with primary school, I can safely say that there was a resounding difference in my personality from just five years prior, including a stutter in my speech. Secondary school, to my disappointment, turned out to be an even worse experience than primary school. I rushed off to boarding school thinking that it would be a safe haven and fresh start for me, but it turned out to be a worse experience as, for all 4 years of my O’level, I failed to assimilate into the school culture, and as a result, my self-esteem and image, and along with that my grades and perceived future, went down the drain of constant taunting, bullying and isolation from people who would otherwise have been friends. The situation at home didn’t improve either, my father was still very temperamental and erratic, and with my grades, it was never in a good way. I recall one time when I had just started holidays and he left home early so I put my report at his night stand. I was still deep in sleep when I felt something hitting me. When I got up I was dragged out of bed and beaten, I can only compare it to a bar brawl, just that I wasn’t defending myself. So it was constant negativity, both at home and at school, but I managed to keep fairly sane because of the several pep talks I had grown accustomed to in my head.
Senior 4 was particularly interesting, and I believe summed up my experience in that period. Final exams were approaching, and as such I upped the ante academically, and was gradually improving my performance, actually it was an all-time high for me, and I was very positive with my progress, then the school I was in at the time instituted an extra period they called ‘Term X.’ I did not expect it as I hadn’t heard of it before, and it was basically candidate classes staying at school while other students went
home and enjoyed the holiday. For me, it was a stretch too far, and students didn’t have rights at school, we couldn’t choose not to go. It was at this point that I reached maximum exhaustion and much as no one else could tell, at that point I had started considering suicide.

I became extremely quiet, to the point that my peers started growing concerned. I never spoke a word, for about a month
or more, and not even one teacher noticed. With my increased silence, my hostility grew, and I remember turning on a friend who
tried to tease me, I can now describe that as rage in retrospect. I believe that it was at that point where I became afraid of myself,
because I had a hard time controlling my anger since then. During the exam period, for some reason, I lost appetite, not that
this was uncommon throughout my life, I was about 45 kilos then, and of course now I know that the food on the menu was partly to blame. One night, I felt an ache in my right shoulder and after a few hours, I could feel my shoulder joint slipping out of its socket.

A nearby friend had access to a phone and rang my father who then took me to the national referral hospital. They performed x-ray screenings of my shoulder and called it ‘chronic dislocation’ after which the medical personnel sedated me, took off their shoes, and literally kicked and pulled my shoulder back into position. I sat my U.C.E exams like that, one arm in a makeshift sling, my dominant arm, and the other to write and put my hand up when done to relieve the excruciating pain. Not all was a loss because despite not getting what I had worked for, I still got a division one, with one arm. For my A ‘level I managed to tussle myself into a prestigious school in Mbarara, and everything was fine until I got problems, again, at home. I fell silent again, and was eventually admitted to the school sickbay, where I was given pain killers.

Though it wasn’t my plan, I was really fighting hard with the urge to overdose on the pain killers. Eventually, my parents were called and I was taken home, to a furious and disappointed father. At some point, while quarreling, he asked me whether I was mad, and this was a turning point, because I, myself, was convinced that something was terribly wrong with me. I responded that yes, I was indeed mad, much to the shock of my parents (Because I never spoke back to my father especially when he was angry). My father asked, after a few days, whether we should visit a psychiatrist, and I responded in the affirmative. He took me to
Dr. David Basangwa, who is currently the Executive Director of Butabika Hospital. He asked me a number of questions, and I was
very surprised because he seemed to be describing everything I was going through, even within myself. Finally, he explained to me how I had a number of anxiety disorders including paranoia and bipolar disorder. About two months from that diagnosis, my father suddenly died and the autopsy reports showed that it was advanced, undiagnosed lymphoma. It felt like my whole life was a preparation to handle that day, because it seemed like a planned farewell, given my sudden hiatus from school. Some people say I was stronger than everyone else in managing the loss, but at times I think that my mind wasn’t very clear at the time and I had blocked the thoughts.

For a while after his passing, I had difficulty getting along with my family, I felt like there was a void that couldn’t be filled, maybe that was me adjusting, but I felt like the only person that could guide me was gone, and felt a sense of lack of direction. In short I, for a while, was violent towards especially my eldest brother, but towards my elder one as well. I even remember one time I was so enraged that I shoved my mother, though I regretted it almost immediately. I had issues at school as well, as despite my quiet nature and seemingly meek and humble nature, I got into a fight with a prefect, and not just any but one with experience in martial arts. I had a feeling that if angry enough, I would become the strongest person no one had ever seen, a true problem, and justified it to myself by saying, ‘I only beat those who hurt me.’ I recall feeling very low as well, in terms of status in society, because up until then I didn’t question our family’s financial stability, then all of a sudden the person we considered the bread winner had passed away, and with him the majority of people we considered family friends, this is one of the reasons I do not speak to many people and rarely if ever, introduce myself to people first, some consider it pride or being mean, but I saw how fickle and impermanent friendships could be at a young age.

These things I saw I considered as learning curves, and the further I drew away from people, the closer, in my opinion, I drew to God. Every time I felt down, I resorted to the Bible, or a relatable song like Natalie Grant’s ‘Better Than A Hallelujah.’ One of the secrets I have kept fairly well has been my relationship with God, because people assume that not going to church equates unbelief, but that’s a story for another day. Later on, about a year later, I went to the radiologist for a routine scan on my shoulder, and was surprised when two x-rays had to be performed, as there was a dispute about the results of first, and
my posture was then assessed. The doctor then told me that I was suffering from a rare condition of the spine called scoliosis, and
this was what made it difficult for me to do many things, including concentrate in class, because it caused a lot of pain, made it hard to breathe normally, run, among other things. My doctor later related it to my mental health saying that that pain and disability is directly linked to my mental state. There is a lot of ignorance surrounding mental health and generally health in Uganda, because it took over 10 years to diagnose two related things. My life could be far different if this issue was properly
diagnosed in my childhood, because according to doctors in Uganda, the procedure is too risky to be performed on an adult, so
I have to live with it for a lifetime.