disabilities

Jackie and Neema's adventures

Jackie is a Community Based Rehabilitation Field Officer. Together with Neema, the clinical officer, they travel from Kamanga Health Centre to the neighbouring villages of Kamanga on their trusted motor bikes. Watch the latest episode of their adventures!
Watch Jackie and Neema as they do their rounds in the village of Kamanga as part of Cedar Tanzania's Community Based Rehabilitation program, to bring care to people with disabilities.

What Jackie and Neema saw...

When Jackie and Neema, Field Officer and Clinical Officer from our Community Based Rehabilitation outreach programme, first reached Sara and her father in the village, they didn’t know what to expect. One of the Community Health Workers who work closely with Kamanga Health Centre and the outreach team suggested they visit the girl who was newly arrived in the ward as he had heard that the girl had physical impairments. When Jackie and Neema arrived on their motorbikes at a tiny bricked house they encountered an 18-year old girl with feathers on her leg and suspiciously looking mashed green leaves on her head. Sara didn’t speak or smile and her father chased Jackie and Neema away as soon as they had introduced themselves. Seeing the girl in such a bad condition however was really hard on Jackie and Neema who always put all their effort into improving a patient’s condition. They were not willing to give up just like that and returned the next day. Gently, they tried to speak to Mr Raja to find out what happened to his daughter. Though still reluctant, he explained that he was separated from Sara’s mother, who was located in a different ward, and said that as soon as he learned that his daughter was not well, he took her to live with him. Mr Raja assured the outreach team that Sara was bewitched. He explained that she was under treatment from a traditional healer and that there was nothing they could do for her.

Typical housing in Kamanga - the largest village in Nyamatongo Ward

Typical housing in Kamanga - the largest village in Nyamatongo Ward

All over Tanzania a widespread belief prevails that people with a disability are bewitched or suffer from an act of God’s will. It is not the first time that our outreach team have encountered resistance to or disbelief in conventional medicine. It took quite some time and several more visits until Mr Raja had built enough trust towards our Clinical Officer and Field Officer to allow them to examine Sara. After being examined by Neema it became apparent that Sara had mental as well as physical disabilities but there was no way of telling what caused her condition. She suffered from spasms on one side, and had severe anxiety and speech impairments. Furthermore, she had a huge burn wound on one leg. This stemmed from a particularly cruel traditional practice whereby the person who is believed to be possessed by a spirit is covered with large cloths and a fire is made at their feet to expel the spirit with the flames.

The outreach team saw an urgent need for treatment and asked Mr Raja for permission, which he finally granted, under the condition that they would not give any injection as this would mess up the traditional medicine. Although the outreach team pointed out that the traditional medicine is not suitable to heal the wound or improve Sara’s overall condition, Mr Raja insisted. Jackie and Neema were not discouraged but kept visiting Sara and her father on a daily basis, continued to dress the wound and started occupational therapy exercises. To support their efforts, a weighted bag which functions as an assistive device was built. This helps Sara to sit more comfortably and independently, reduces the spasms, straightens the spinal cord and improves joint mobility. On top of the medical treatment, the outreach team persistently educated Mr Raja on the benefits of their medical approach, rights and needs of people with disabilities and causes of disabilities.

When Mr Raja saw the rapid improvement of the wound on the leg of his daughter and positive development of her overall condition he finally believed Jackie and Neema. Jackie says: “Baba Sara (Mr Raja) is now very supportive and if we miss going to their house even once he seems to be disappointed”. Seeing his daughter smile again makes him happy and he is very thankful for the good care and quality medical services our CBR outreach team provides. Sara’s father has stopped the local treatment now completely and only relies on the medical service provided by the outreach team.

By the way, the mashed green leaves on top of Sara’s head and the feathers on her wound are traditional medicine prescribed by the local traditional healer. Thankfully, the outreach team managed to convince Mr Raja that this was not adequate treatment for his daughter.

(Patients’ names have been changed to protect their anonymity)

Habari Kamanga (Hello Kamanga) - second article by Katherine Anne Lee

Nearly a month has passed since I arrived back home from my journey to Tanzania, and the last mosquito bites on my arm are finally fading. My mind is still very actively processing my visit to the Kamanga Health Center, however. Maybe you read my previously published story about Peruzi’s light? Today, I would like to tell you my second story about Emanuel Mavuno. I hope you will enjoy the read and feel assured that your generous support is needed more than ever.

EMANUEL’S WALK

By car, we follow Jackie and Neema, who are on their motorbikes. They are from the Community Based Rehabilitation (CBR) project. As mentioned in my first story, CBR is an outreach project, aimed at offering quality health services to those unable to reach any form of medical support. The Kamanga Health Centre runs the project, and I cannot stress how impressed I am by their work. Many people in Tanzania don’t have any means of transport, which means they have to walk for hours to reach a larger town. This becomes a very challenging task if they are not well. On top of this, traditional western medical support is only encountered with caution. Tentativeness paired with a difficult journey often leads to health problems being neglected, even when severe. Thanks to the CBR project, the ambassadors of the Kamanga Health Centre are in the field and can find people who are in desperate need.

Our small convoy swirls up red dust as we make our way through the remote landscape of the outskirts of Kamanga. Now and then children spot us, wave frantically or run beside the car for as long as their short legs will carry them. Even today I can hear them chanting, “white people, white people”. It’s amazing how happy they are. During the whole journey, I never saw a child cry, let alone get into a temper. Their joy underlines the fact that possessions don’t necessarily mean happiness.  

Emanuel mending shoes

Emanuel mending shoes

We stop on a grass bank and park our car and the motorbikes. We are out in the middle of nowhere, and I can’t imagine where we are heading. The sun is beating down on my head, I feel thirsty and a first wave of travel tiredness overcomes me. But it feels good to move and use my legs, following Jackie and Neema down a little path. Well, it’s not really a path; it’s actually just some beaten down grass. It reminds me of hiking the rural hills of Church Stretton in England, close to the Welsh border. My grandparents lived there and, every summer, my brothers and I would spend loads of time exploring the hills. The grazing sheep left similar simple paths behind them. It was a great adventure to follow the short-legged animals while picking wild blueberries, and feeling the harsh Welsh wind on our faces. Lost in memories, I reach a platform with a wonderful view of Lake Victoria. Large rocks seam the outer area of a simple clay hut. But my attention is drawn to the view and the peacefulness of the area. It’s a beautiful spot, and its tranquillity distracts me from the real reason for being here. It takes me a minute to realise that we have arrived at Emanuel Mavuno’s house. Actually, I have to admit that I know we are visiting someone, of course, but I’ve somehow missed out on what I should expect. A tall man is sitting on the ground, bent over some old shoes. He carefully gets up as he sees our group. Still admiring the view, I wonder who we are visiting. The tall man has such a happy smile and a calm aura that I don’t immediately make the link between him and medical support. I admire his happiness as he slowly moves closer to our group, but then I notice that he doesn’t walk smoothly. His flip-flops are totally worn under the heel. Well, the rubber shoes don’t actually have heels anymore, just a large hole at the back. Jackie and Neema introduce Emanuel Mavuno to us. He doesn’t really give me the impression of being ill. But as I study him more closely, I realize he is missing large parts of his fingers. Only maybe 30 per cent is left from what must have been once long fingers. While I’m wondering what happened to him, Neema explains that Emanuel suffers from leprosy. Leprosy! A thousand thoughts rush through my mind. Does leprosy still exist? How does leprosy infect you? Is it safe to be so close? What about vaccinations? Did I get a vaccination? How can Emanuel be cured? After inhaling the tranquility of the place, it’s like being slapped in the face.  

Emanuel carefully sits down on a rock and slips his feet out of the remains of his flip-flops, while Neema unpacks some medical supplies.  

Emanuel Mavuno is one of the many people in Tanzania who rely on water supplies from Lake Victoria. The water is used for daily nutrition, and many people also wash themselves on the shore of the lake. The growing population, industrialization and the lack of water and waste cleaning facilities have led to the poisoning of this water lifeline. Lake Victoria is ill, and is infecting the more than 30 million people from Uganda, Kenya and Tanzania who depend on its water. Emanuel Mavuno also washes himself in Lake Victoria. After he became infected with leprosy, his family left him so as not to risk becoming caught by the same destiny. Alone, he was not able to keep up with life. He lost his family, his work and his connection to the community. Before the CBR team found him, he was in great pain, hoping for the odd passer-by to show compassion and leave him some water or food. Today, the CBR team has been able to stop the infectious disease on his hands. But his feet are still a worry. Ulcers the diameter of an orange cover both his feet.The medical care has luckily been able to stop the further growth, which would have led to losing his feet, and thereby the ability to walk.  

Neema is holding a bottle and signals to Emanuel to lift his foot. While the clear liquid runs over the wound, the giant ulcer turns white. I can remember having pin-size ulcers in my mouth as a child. My father gave me salt to disinfect the wound. Only too well can I remember the burning in my mouth, and the salty taste running down my throat. It was a terrible feeling, and I cannot imagine how this procedure must feel for Emanuel. While his ulcers turn white, he closes his eyes as if to enjoy the sunlight on his face. Only the flinching of his eyebrows now and then reveals the pain he is experiencing. Once both feet have dried, a healing lotion is added and the wounds are covered with a bandage. Emanuel slips his feet back into his flip-flops and stands back up on his heels. I wish we could give him some new shoes – it would be so easy to do. Facing us all, Emanuel expresses his thanks to all of us for visiting and helping him. He expresses his extreme gratitude to the people in Switzerland, who support this project and thereby give him a cure and the hope of a somewhat more ordinary life.  

Back home, I’ve thought about Emanuel Mavuno many times. The terrible disease at such a tranquil place just seemed so surreal to me. Such a kind man with so much happiness to give. Even though his illness shocked me, he was able to give me peace of mind. Even today, in the 21st century, leprosy is a dangerous and discriminating disease. I’m impressed by Emanuel’s capability to face this condition with so much grace.  

Emanuel’s situation has now improved further, and his wounds are still being regularly treated by the CBR team. The upper layers of the ulcers are slowly healing, and it appears that his feet will improve with just a little more time and care. What makes me really happy is to hear that he’s making progress with his business of mending shoes and fishermen’s nets. Emanuel is becoming able to manage his life again, and this must be game-changing for such a proud man. He’s also helping some fishermen with their catch, and now and then doing some fishing himself. Lake Victoria’s water is what it is, and I pray that he will be all right. Maybe one day the remediation of Lake Victoria will also be a topic – I would love that moment. Today, I’m just happy that we can celebrate this step of healing and enabling Emanuel Mavuno. The Cedar Foundation Tanzania and you, its donors, can be proud. This change matters, and no action is too small! Can you also see Emanuel Mavuno standing by his clay hut, gazing into the distance, feeling the sun and a soft wind touch his cheeks? He is now able to walk towards his own future.

Written by novelist Katherine Anne Lee

Habari Kamanga! (Hello Kamanga!)

My name is Katherine Anne Lee. I live in the beautiful city of Zug in Switzerland and, a few weeks ago, was given the unique opportunity to visit the Kamanga Health Centre in Tanzania, which was opened by the Cedar Foundation Tanzania one year ago. My friends and family back home have been very excited to hear about my latest Africa journey, in which I saw many things, some beautiful and some hard to grasp, even painful. They are all stories about everyday life in Tanzania and the wonderful work the Cedar Foundation team is doing. I’d like to share my first story about my visit to Peruzi, and maybe I can share some more later on. I hope you will enjoy reading this, and see how your support for the project matters.

Peruzi’s light

by Katherine Anne Lee

It’s only a short drive from the Health Centre in Kamanga to a small village nearby. Clay huts line the busy, graveled street. It isn’t a classic street as you would imagine in the western world - the main street of Kamanga is along stretch of dusty gravel that connects remote communities. Sooner or later, everything that is making its way from A to B, has to end up on this street, dodging portholes and stray dogs. Overloaded buses, children who walk for miles to go to school, cattle in search of a new grazing spot and locals on their way to the market or maybe the Health Centre, pass by. It’s a bustle you could watch for a while if you wouldn’t become coated in red dust every time a heavy lorry passes by. But we’re not here to observe the street. We are here to visit Peruzi. Jackie and Neema from the Community Based Rehabilitation (CBR) project are showing us their work. CBR is an outreach project, aimed to offer quality health services to those unable to reach any form of medical support.

It’s only a short jump down the bank from the dusty road and we’re standing in front of a tiny mud house with two simple doors. Both are open, but it’s dark and difficult to guess what’s inside. An elderly lady is nervously sweeping the floor outside, and greets Jackie and Neema. She is missing some front teeth but nevertheless has a happy smile, and points us towards one of the small doors. As we come a little closer, I can see an old, weathered mattress on the floor. There are colourful sheets on top of the mattress, all muddled up. And there, in between the colours, I see a face and part of a leg sticking out between the sheets.So small and fragile, as if it were a child lying there. It’s Peruzi, a 40-year-old woman, marked by her heart-breaking past.

Peruzi is challenged with epilepsy. The illness was more under control in her younger years; she lived within the village and even gave birth to a son. In her twenties, her epileptic outbreaks increased to the point where she was no longer in control of her own destiny. Her mother, a small lady, closely interwoven into the local community and swayed by social stigmas, was unable to cope with her daughter’s deteriorating situation. Embarrassed by the local talk that her daughter was afflicted due to the failure of her mother, she thought the only thing she could do was to tie Peruzi to a rope and lock her into a small dark room. There, Peruzi vegetated for a full twelve years on the bare, cold, clay floor, without any form of comfort, light or proper nutrition. It was a pure coincidence that the CBR team found Peruzi. The degeneration of her body left the team with no option other than to transfer Peruzi to the nearby hospital. While Peruzi received care, the team patiently educated her mother to correct her misbelief about disabilities being a consequence of personal failure, and persuaded her to share her old - and only - mattress with her daughter.  

Peruzi’s situation left me feeling ashamed, and reluctant to enter the dark room. I didn’t want to disturb her; maybe she would be afraid or feel uncomfortable at having us all looking down at her. On the other hand, I didn’t want to appear rude by not visiting her.While I waited, I deeply wished I could do more for her. A new mattress, some fresh clothes, sanitary material; this would be easy for us to organise. Having so much, but having nothing in my hands to help gives a feeling of powerlessness. Her big brown eyes gazed up as I entered her room. I wished I could comfort her, tell her it will be better now that Jackie and Neema have found her.

A few weeks later, back home, I was happy to hear that the CBR team had been able to improve Peruzi’s situation. They brought her a wheelchair, bedding and sanitary material. I can picture Peruzi sitting outside, enjoying some fresh air and finally feeling the sunlight touch her cheeks again after twelve years in the dark. It must be an exciting moment for her to be part of the community again.  

Only a few days later, I received the terrible news that Peruzi has sadly passed away. Her poor health and missing nutrition had taken its toll. Were we too late? Or could we have made a change? While frustration and deep sadness cloud my heart, I decide to light a candle for Peruzi. Gazing at the flame, I whisper to her and thank her for her time. The candle burns all night in our window. In the morning, the flame flickers one more time before turning to smoke and I realise that Peruzi’s story matters. Peruzi’s light has been seen.

KATHERINE ANNE LEE IS A PUBLISHED AUTHOR WITH HER FIRST NOVEL  "FROM DUST TO DUST AND A LIFETIME IN BETWEEN" RECEIVING PUBLIC ACCLAIM.