Ugandan Musician Anthony Opio Speaks About His Life

Blind musician Anthony Opio speaks about his life and his career in music. The poster says:

A 64-year-old visually impaired singer in Gulu district has beaten the odds in his life to gain fame across the northern town. Anthony Opio is a passionate musician who earns a living from his talent.

Hope for the Deafblind in Uganda

Deafblind children are able to attend normal school if the correct facilities are in place for them. With a small investment the deafblind can lead useful and productive lives. The poster says:

This film looks at Sense International Uganda's community-based rehabilitation and education work with deafblind children.

Deafblindness Uganda

Deafblindness is a condition with no useful eyesight and no useful hearing. Like deafness and blindness the effects on hearing and sight may be moderate to profound.

There are many persons with disabilities (PWDs) in Uganda that are affected by deafblindness from the effects of  congenital rubella syndrome (CRS). Rubella Epidemiology in Africa in the Prevaccine Era, 2002–2009 says that CRS is a significant cause of deafblindness in the developing world. No one is sure of the exact numbers, but it is estimated that 110,000 deafblind people are born in the developing world each year. 

Rubella or German measles is a common infection of childhood, it is also the most common cause of deafblindness. In an adult rubella may be mild with very few symptoms. In very young children rubella can be serious and may cause death. However for a pregnant woman in the first few months of her pregnancy rubella can be devastating for to the fetus. The effects of rubella, called CRS are listed in Wikipedia, the major symptoms form the classic triad of CRS:

• Sensorineural deafness (58% of patients)
• Eye abnormalities—especially retinopathy (disease of the retina that causes impairment of loss of vision), cataract (the classic clouding of the eyes), and microphthalmia (literally small eye, congenital malformation of the eye) (43% of patients)
• Congenital heart disease—especially pulmonary artery stenosis (a problem that affects blood supply) and patent ductus arteriosus (a serious conginital hear defect) (50% of patients)

No one know exactly how rubella causes fetal defects. 

In 2014 82% of children from 12-23 months were immunized against rubella reducing the number of child deaths (Immunization, measles (% of children ages 12-23 months).  An infected mother has a 10% chance of passing rubella to her unborn infant (Uganda to introduce rubella vaccine). By 2017 Uganda plans plans to have a routine measles vaccine available for everyone.

Alice Nabbanja signing: ‘What motivates me most is seeing the slightest progress in a deafblind child.’

Deafblind children may feel isolated and alone with parents unable to communicate with them. This is the story of Wasswa told by Sense International:

Wasswa is eight years old. He has profound deafness and reduced vision as a result of Congenital Rubella Syndrome. He lives with his mother Namaganda, father, Lutalo, and his twin brother, Kato, in a rental house in Salaama, Kabuuma Zone, Wakiso district in Uganda.
When Wasswa was born, he was underweight and unwell. The hospital kept him under medical observation for three weeks. Wasswa’s parents learned he was visually impaired when he was three years old. By the age of five, they began to suspect that he was deaf.
At the age of eight, Wasswa couldn’t bathe himself, and his behaviour was sometimes challenging and aggressive. Wasswa began to develop coping mechanisms, for example, he became obsessed with a straw. He had particular places where he’d keep the straw, and would get very aggressive if anyone removed it. As Wasswa held the straw with his left hand, he’d suck his right thumb, preventing him from using his hands for things like bathing or chores. Wasswa would play alone with his straw in a corner and wouldn’t allow children to get close to him. Instead, Wasswa would push the children away, often hurting them.
In May 2015, Wasswa was referred to Sense International Uganda for specialised rehabilitation and support.
As his mother explained: “On assessment day, I was able to interact with parents whose children had the same condition as Wasswa. I felt relieved when the doctor explained the type of measles which led to his deafblindness”.
Wasswa started receiving support from his Special Education Needs (SEN) teacher with very clear goals, particularly around improvement in communication and social skills, independence in activities of daily living, as well as development of his visual perceptual skills through exercising, playing and making use of touch. For Wasswa, his hands are his eyes, ears and voice.
Through attending the Community-Based Education (CBE) programme since June 2015, Wasswa is now able to communicate meaningfully. For example, when Wasswa wants a drink, he is able to bring an empty cup to his mother and take her to the fridge.
When children from the neighbourhood take Wasswa’s toys, he no longer pushes them, instead he goes straight to his mother and leads her to the children and toys.
“He is not aggressive anymore”, shared his SEN teacher.
Wasswa is now able to identify beads of colours, sort and group them, and choose his favourite red colour. He is able to take turns while playing and sharing interactive games with his brother.
Although Wasswa still finds challenges in buttoning and unbuttoning shirts, he is able to put on a pair of shorts without any assistance. Importantly, Wasswa is now able to shower by himself.
His mother said: “As soon as I closed the bathroom door, I heard him making loud noises, jumping and clapping his hands. The sound of splashing water was heard from a distance. I peeped to see what he was doing. Surprisingly, Wasswa was so happy, jumping up and down as he poured water on his head.”
In February 2016, Wasswa enrolled at Bwanda Regional Deafblind Resource Centre, which is a hub of expertise on deafblindness in the country.

For more information see Sense International Uganda's website.

There are other organisations working with the deafblind in Uganda:

NADBU (the National Association of the Deafblind in Uganda) is an indigenous, non-governmental organization that promotes the welfare of Deafblind persons in Uganda by accessing them to services in the sectors of rehabilitation, education, health, economic support, advocacy and lobbying, capacity building, training in communication & mobility and other sectors relevant for the their self-reliance.
NADBU's Overall Aim: The overall aim of NADBU is to improve the quality of life of deafblind persons in Uganda through equalization of rights and opportunities in all life spheres.The National Association of the Deafblind in Uganda (NADBU) was formed by the deafblind persons themselves.
Deafblindness is a unique category whereby a person has a combination of severe degrees of hearing and sight loss.
NADBU deals with over 500 deafblind persons in 13 districts.
NADBU has 3 staff at the moment with 5 volunteers who are deafblind.

Vaccines for rubella have significantly reduced the numbers of deafblind people being born. With the introduction of vaccines for the whole country deafblindness due to CRS should be reduced significantly.

The story of blind hairdresser Aisha Bahati

This video shows that blind people, far from being a burden, are able to lead useful productive lives. NTV says:

A Ugandan woman who lost her sight at the tender age of eight has overcome great odds to make ends meet as a hairdresser in Kampala. Aisha Bahati is an extraordinary woman who didn’t let her handicap stop her from making it in life.

Visual Impairment in Uganda

Visual impairment, is reduced ability to see. Visual impairment cannot be correct by glasses or other usual means. Blindness is used to describe complete or near complete loss of vision. Visual impairment may cause problems with activities like reading, driving, socializing and walking.

A gentleman helps lead a 

visually impaired elderly 
woman to receive 
treatment at Lira hospital

Key facts to be taken from the World Health Organization Visual Impairment Fact Sheet are that:

• 285,000,000 people are estimated to be visually impaired worldwide: 39,000,000 are blind and 246,000,000 have low vision.
• About 90% of the world's visually impaired live in low-income settings.
• 82% of people living with blindness are aged 50 and above.
• Globally, uncorrected refractive errors are the main cause of moderate and severe visual impairment; cataracts remain the leading cause of blindness in middle- and low-income countries.
• The number of people visually impaired from infectious diseases has reduced in the last 20 years according to global estimates work.
• 80% of all visual impairment can be prevented or cured.

The World Health Organization Visual Impairment Fact Sheet says that globally the major causes of visual impairment are:

Uncorrected refractive errors (that require glasses: Myopia, hyperopia or astigmatism), 43%
Unoperated cataract, 33%
Glaucoma, 2%.

An estimate of the Number of Persons With Disabilities (PWDs) in Uganda has been given in this blog. Based on 2014 population figures 376,975 people have some form of visual impairment.
There is a further risk of blindness and visual impairment in Uganda. River blindness is a parasitic skin infection. The African Programme for Onchocerciasis Control (APOC) states that in 2006 2,758,366 were at risk of river blindness or Onchocerciasis in western Uganda. A 2015 Onchocerciasis Study in Northern Uganda shows that an estimated 5% of the people in the at risk areas tested positive for the river blindness in skin tests. River blindness is a significant socioeconomic burden that can be treated with antibiotics. A 2013 article published by the World Health Organisation, Uganda interrupts transmission of river blindness in almost half of the endemic areas has the following comment:

Uganda has successfully interrupted transmission of onchocerciasis (River Blindness) in 8 out of 18 localized areas (foci) endemic for the disease and is likely to eliminate it by 2020.

This excerpt from an article from New Vision, about a married couple that are both blind makes interesting reading. Angella Apuuli and Sembataya live in Mawoto sub-county in Mukono district, a little south and to the east of Kampala. They have 3 children who are all blind:

"Sorry to make you wait," Angella Apuuli, Sembatya's wife, apologised as she put down what she was carrying. "I had gone to tend to the pigs," she said. The rat-hole of a kitchen and the mud-and-wattle pit latrine just a few metres away that lets out a foul stench, are pointers to the misery and poverty the family lives in.
Despite being visually impaired, Apuuli is a good-natured woman with a personality that puts others at ease. She is sociable with a high sense of humour and also speaks fluent English.
Seated on the veranda of their two-room house, Apuuli reminisces how she lost her sight. Her birth on December 11, 1982 in Kumi district was normal. She had her sight, but at only two years old, she lost it after suffering a life-threatening measles attack.

Measles attack

 She attended Madera School for the Blind for her primary education, studying all the subjects taught in a conventional school. The only difference was the use of a braille machine to read. She dropped out of school in S4 when her education was interrupted by the Lord's Resistance Army (LRA) rebel attack on Teso.

How they met

Apuuli's mother took her to Mbale Vocational School for the Blind in Nabumali, where she acquired skills in handcrafts, knitting and basket weaving. It was here that she met her husband.
"I was about 20 years old then. Sembatya approached me and proposed marriage. I did not take him seriously. After training, I was bound to return to Mawoto to take care of my sick mother. I gave him the directions and asked him to come and meet my mother if he meant what he said," she said. Apuuli was surprised when Sembatya, barely two weeks after she had left the institution, made the trip.

The couple's three children are visually impaired

Two things struck her; a visually impaired Sembatya coming all alone and by water via Luzira landing site.
"He pleaded with me, saying he wanted to marry me since both of us were visually impaired. He said we could take care of each other and told me that his mother had died and he was staying with a stepmother, who was mistreating him," she said.
Sembatya's emotional plea moved Apuuli to believe that he was truthful and serious. Her mother gave him a condition to take good care of Apuuli. He had just returned from the institution in Mbale and was jobless, staying with a relative in Mbiko.
"He visited me a number of times," Apuuli says.
After her mother's blessings, the duo rented a room at Mawoto trading centre in 2001. Two years later, they managed to build themselves a small house. Apuuli describes her husband as caring, supportive and loving.

Blind children

Her first born came in 2003 and brought her the happiness of being a mother. But her joy was short-lived when the child's eyesight started getting dimmer. He eventually lost his sight. They went to many places for treatment, but nothing could be done.
As if that was not bad enough, their second and third children were born visually impaired. Innocent Kabogoza, the first born, is now 11 years old and is in P3, Tito Muganga, 8, is in P2 and Timothy Jemba, 6, is in P1. They all go to Salaama Rural School for the Blind in Mukono.
The children were taken to Mengo Hospital where they were operated upon.
Muganga is now partially blind.
Apuuli says visually impaired children need the support and encouragement of their parents and it is important that they are given opportunities to explore, discover, learn and grow into responsible people.
"I am grateful to my parents for never discouraging me from doing anything based on my visual impairment. I was encouraged to do anything I wanted, including riding a bike, engaging in sports, cooking and studying braille," she says.

Apuuli's typical day

I have a wake up prayer in the morning. If I have somewhere to dig, I do so until about midday. Then I mop the house, prepare breakfast and fetch water and food for my pigs. Then I chat with my friends.
Most times, her husband is not at home to have meals with her as he leaves early by boat. Being a musician, he spends most of his time rehearsing or going around churches and functions entertaining people.
Apuuli is good at farming, but lacks land to cultivate. She has turned to piggery instead and a bit of digging. She sells the piglets and potatoes to supplement her husband's income.
"Someone may deny me a job because of my blindness, yet I can do almost everything. I can bake cakes, but I was shocked when I tried to sell mandazi at the trading centre but people refused to buy from me. I had to bring all of them back. Fortunately, my children were on holiday and they ate them. I can do any business if I get support," Apuuli says.

Sembatya was born blind

Sembatya, 32, is the fourth of eight children born to Musoke Senkungu of Mbiko in Buikwe district. He believes measles could have robbed him of his sight, though his parents still insist it was witchcraft.
He went to Spire Road Primary School (section of the blind) in Jinja up to P7. He then had to live a quiet life helping his parents rear pigs and chicken to get more income for his family. He joined Mbale Vocational School for the Blind, courtesy of Father Keveti, a Catholic priest, where he studied braille. Being intelligent and studious by nature, he quickly grasped special skills in handcraft and agriculture.
It is here that he met Apuuli, who offered him her heart and care. Sounding philosophical, Sembatya says: "Each one of us values certain things in ourselves. We look for complementary characteristics in each other."
"We always have to dig deep within ourselves to ensure that we are not making assumptions based on our condition and letting those prejudices spill over into our interactions. Obviously, blindness is a part of our lives," he adds.

Seeing his future in music

Sembatya is a humble, average man, who undertook an extraordinary feat singing gospel music. The Bible passage in John where Jesus says: "We must do the works of the one who sent me, while it is still day..." inspired Sembatya to preach the gospel through music. "My condition has not stopped me from pursuing my dreams.
I see my future in music. I write my own music, drawing inspiration from real life experiences. I sing about Jesus because there is nothing greater to sing about," he says.
You can sing about love, he stresses, but there is no greater love than the love of God. He started singing in 2005 and recently recorded a six-track album Fena Twagale Yesu.
The children were taken to Mengo Hospital where they were operated upon. Muganga is now partially blind

Community life

Sembatya is loved and respected in and outside his community. He says people are truly nice and supportive, understanding and helpful in a constructive way. He feels happy about himself and his family, their good health and their ability to move on.
He says visually impaired people move by instinct.
"Every day, we are changing what it means to be visually impaired. The sight of a blind person crossing the street independently, grocery shopping, travelling long distances and the thousands of other things we do really make a difference," he says.
Sembatya is grateful to the Lillian Foundation, a charity organisation based in Mukono that pays part of school fees for his children. Each child pays sh200,000 per term.
He also thanks the RDC of Mukono, John Kasenge, who often invites him to perform at district functions, where he gets financial assistance.

Angella and Sembatya both make a positive contribution to their community socially and economically. They have overcome stigma and prejudice to lead fulfilling lives.

For more information see Uganda National Association of the Blind's website and Facebook page.

Imagine Becoming Blind Over Night

This is the story of a woman who is challenging the prejudices and stereotypes around blindness.

Sylvia Kalibeela does not know what caused her to lose her sight over night 10 years ago when she was 20 years old The Daily Mail reports. The worst part of the experience was being torn apart from her 2 young boys.

After her husband started mistreating her because of her disability, Sylvia, now 30, felt she had no choice but to leave their home in Masindi, Uganda, and was subsequently banned from visiting them.
But after seven months at a school where she learned to use a knitting machine, as well as being taught skills such as using a white cane and reading braille, she hopes she can win her children back.

From the Mail Online

Her story highlights the stigma and prejudice associated with disability.

'Before I went blind, my husband loved me,' she recalled. 'When I couldn't see anymore, he said I had become useless and that he had to nurse me like a child. He began mistreating me and I made a decision to leave him.'

...nobody thought Sylvia would be able to look after her children, so they remained with her husband. Sylvia was stopped from even visiting her children and was only allowed the occasional phone call. 'I asked him to bring them to see me,' she explained. 'But he refused.'

Sylvia went to live with her parents. Her

friends soon dropped away because they didn't know how to help her and didn't want to be seen walking with her.

Then she heard about a program by Sigsavers. At a vocational school in Kampala they taught her how to operate a knitting machine. They also taught her essential life skills like how to use a white can cane and reading and writing in Braille.

'I stopped looking at myself as a worthless person,' she said. Now Sylvia is hoping to inspire other people with disabilities.
'I have learned that given a chance, a disabled person can be equally productive,' she said.
'This programme has saved me from begging. Before, I used to beg for almost everything.
'But with these skills, I can work and provide for myself. And that makes me very happy.'

Now Sylvia dreams of starting her own training program to help other disabled women.

A summary of article 8 of the United Nations Convention on the Rights of PWDs says: "Countries must raise awareness of the rights, capabilities and contributions of people with disabilities. Countries must challenge stereotypes and prejudices relating to people with disabilities through campaigning, education, media and awareness-raising programmes.

It cannot be emphasized more: Disability is not inability.