Transforming the Lives of Deaf People

This short video shows how sign language has transformed the life of a young boy, Patrick, in rural Uganda. It is a follow up to a longer documentary from Channel 4 in the UK, which you can see here: See how sign language can transform lives.

Before learning sign language Patrick and his father faced insurmountable communication barriers. Patrick was disabled by the barriers he encountered. He had low selfesteem, was isolated and did not contribute to society.

With sign language he has an impairment but he has ceased to be disabled.

What a difference an education can make?

The incredible story of Christopher Ategeka and how he is making a difference in his Ugandan village community. Mr Ategeka who was an AIDS orphan was brought up by his deaf mute grandmother who also brought up 5 siblings. He  now runs a business in Uganda that manufactures bikes and wheelchairs for the disabled. The amazing story is here:

Can a Northern California student and engineer help his fellow Ugandans? Christopher Ategeka will tell you through his personal experience that the answer is an emphatic "yes."

Christopher Ategeka is the founder and managing director of CA Bikes. Chris was born and raised in a small village in western Uganda. After losing both his parents to AIDS by the age of seven, he experienced years of hardship, striving to complete his studies and take care of his five younger siblings. Through YES Uganda, a non- profit organization, and sponsorship by an American host family, Chris was given the opportunity to move to California to enroll in school at the University of California, Berkeley. Chris graduated with highest honors in Mechanical Engineering.

Chris' organization, CA Bikes, designs, manufactures and delivers high quality, life saving two wheel and three wheel products to African families, farmers, business persons, and individuals with disabilities. By harnessing the most unusual of raw materials, scrap piles, used metal, and other locally sourced recycled materials, CA Bikes' engineering team makes products that save lives.

Education and Disability: Campaigning with Luba Munaba

Learn about the right to education through music, dance and theater. Luba Munaba is a campaigner and advocate for the rights of persons with disabilities. The poster says:

A film by Luba Munaba, a participant in the Leonard Cheshire Disability Young Voices project from Uganda.
Young Voices is a project of the Leonard Cheshire Disability Global Alliance. It brings together groups of young disabled people from 21 different countries. It gives an opportunity for them to share their experiences of fighting discrimination and learn about the new UN Convention on the Rights of Persons with Disabilities and their human rights. It gives them training in campaigning, advocacy and media skills to help them hold their governments to their obligations under the UN Convention and raise awareness. They are using video cameras to share their stories and ideas with the world. These films are their own work, their own stories.
To continue their fight for full human rights for people with disabilities, the Young Voices need your support. If you find these films interesting or thought-provoking, please tell your friends and circulate this link or visit our website: http://www.LCDisability.org/youngvoices Subscribe to our channel by clicking the button above to be kept informed of new films and developments.

The only difference is the disbility

Jonathan Tusubira speaks about his experience working with deaf people in Gulu, Northern Uganda. The sound quality is not good but the message is excellent: The only difference is the disability. The poster says:

Jonathan Tusubira is a Media Trainer, Communications Specialist and consultant, and lecturer at the Uganda Film School in Kampala, Uganda. He manages and Coordinates a Disability Rights Fund (DRF) funded project at United Deaf Women's Organization (UDEWO), where he is developing a Communication Strategy for UDEWO with the aim of Gender Main streaming Deaf Women and Girls in Uganda.In this talk, Jonathan highlights the plight of deaf women and points out that the way society responds to disability determines how best this community is embraced and supported through their life's journeys.

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 experience of being deaf in Uganda

Nasser Ssenyendo was the first deaf person in his village to get a degree. He talks about the importance of the support of his family and how people are changing their perception of being deaf:

Nasser Ssenyendo, talks about the barriers facing deaf people in Uganda and the importance of deaf role models to help address these issues.

Hearing Loss in Uganda

Hearing loss or hearing impairment is total or partial loss of hearing. A deaf person can hear nothing or only a small amount. Hearing loss can affect one or both ears. There are four types of hearing loss (see Wikiprdia):

Conductive hearing loss: When sounds do not reach the inner ear.
Sensorineural hearing loss: Where the cochlea (inner organ of hearing) or the nerves attached do not function correctly.
Central deafness: When the brain and/or auditory nerve do not function correctly
Mixed: Is a combination of all 3 types above.

There are many ways that it is possible to become deaf (see Wikiprdia), this list highlights some of the most important:

Aging: There is a steady decline in hearing from the age of 25 in men and 30 in women.
Genetic: Hearing loss can be inherited.
Exposure to loud noise: 5% of the population globally has some hearing loss from loud noise.
Perinatal: Premature birth or fetal alcohol syndrome may cause deafness.
Disorder: Strokes - Depending on what blood vessels affected by the stroke, viral infections like measles, mumps, rubella (also called German measles) syndrome, HIV/AIDS, meningitis, syphilis, Down's syndrome, Autoimmune disease and recurring ear infections can all cause deafness.
Medications: Some medications like quinine and gentamicin can lead to deafness.
Exposure to chemicals: Exposure to heavy metals and solvents can also lead to deafness.
Trauma: Caused by physical damage to the ear, nerves or brain can create deafness.

As has already been discussed in my blog, Number of Persons With Disabilities (PWDs) in Uganda, based on 2014 population figures there are 843,750 persons with hearing loss in Uganda.

Stigma and prejudice have become a major theme of this blog. Yet I was still shocked by the first words I encountered as I was researching the deaf in Uganda. The Good Smaritan blog says:

Kasiru: The word  reserved by the Lugandan community for the deaf. It crudely translates to stupid or unteachable in English. Many people have become so used to using this word for the deaf that they forget the people’s actual names.
What is it like to be a deaf child in Uganda? In most cases, you will be seen as mentally retarded, kasiru, and an unnecessary burden on the family, especially if you’re born into poverty. If your parents don’t simply kill or abandon you at birth, you will likely live at home in neglect and abuse. In a country with an average family size of ten, you are the last priority. You’ll receive the least resources and work the most menial jobs. Educating you will seem like a waste of money, so you won’t go to school. You don’t learn to write or read, so you will have no means to express yourself. Your attempts to communicate through shouts and gestures will be misunderstood. People will ignore, fear, ridicule, or harm you. If you’re beaten or raped, if your things are stolen, there’s no way for you to testify.

The Good Smaritan website offers scholarships for war orphaned deaf children.

The Uganda National Association of the Deaf (UNAD) website tells some of the history of the deaf in Uganda. There have been schools for deaf children in Uganda since 1959. This is part of the story:  

The idea of Education for the Deaf in Uganda was conceived in 1959 by Uganda Society for the Deaf with efforts of Mrs. Julian Lule with the blessing of administrator from Namirembe Diocese. Mrs. Julian was a teacher at Mengo primary school but her two children were Deaf hence they could not attend the normal schools.
Uganda society for the Deaf decided to establish Uganda School for the Deaf in 1959 as the first school for the Deaf in Uganda. It went on to establish other schools as the number of deaf children increased. The establishment of more schools and units was as a result of UNAD's advocacy and awareness work which emphasized the realization of potentials of Deaf people through education.

The UNAD site continues with a description of the importance of deaf sign language and its undoubted importance as part of deaf culture:

Sign Language is a visual and gestural Language based on the use of hands, eyes, face, mouth and body. A manual alphabet ( or finger spelling ) may be used along with Sign Language.
Sign Language is a separate Language which continuously develops and changes. Sign Language is a visual language expressed with eye movement as well as facial expressions.
Deaf people in Uganda, learn Sign Language as their mother tongue and English as their foreign language. It is impossible to use Sign Language with spoken language simultaneously.
Sign Language is grammatically different from spoken or written language. Sign Language represents Deaf people’s creative response to the experience of profound deafness. Deaf people in every place of the world have their own native Sign Language...
Today, it is common practice for some professionals working with Deaf people, to use Sign Language. The more the teacher’s ability to use Sign Language, the greater the academic achievements and results of Deaf children. With the help of qualified Sign Language Interpreters, Deaf students are able to undertake further training and qualification at Universities and institutions of higher learning. It is important for those unfamiliar with Deaf communities and Sign Language history to understand why Sign language is a major concern to the Deaf.

If you are in any doubt about the importance of sign language for the deaf watch this video from this blog, See how sign language can transform lives. Education and learning of sign language are the best strategies for the successful integration of the deaf and people with hearing loss.

Ugandan Sign Language

UNAD has identified many other issues that affect the deaf. It is worth having a look at these to see how much work is required for the deaf in Uganda:

Social Issues

• Social rights of the Deaf and the Deaf community e.g. right to Marriage, communication, participation etc.

• Right to access hearing Aids and special attention.

• Right to use Sign Language Interpreting services in courts,hospitals, etc

• Support for families with Deaf children e.g. counseling and career guidance.

• Support for Deaf parents with Hearing children.

• Economic support to Deaf people.

• Support for Deaf people with multiple handicaps and special needs like Deaf blind, Deaf women, Orphaned Deaf children.

• Right to access information on Reproductive health, AIDS etc

• Right to access driving permits

Working Life

• Equality in the labour and employment sector.

• General support and legal services for working Deaf people.

• Projects for unemployed Deaf people.

• Needs for Sign Language interpretation services at the work place, Educational institutions and training centres.

Sign Language

• Support to research and development of Sign Language

• Publications of books and video in Sign Language.

• Create awareness on Sign Language to the Hearing public.

• Accessing Sign Language education for the Deaf children and adults.

• Ensure the awareness, usage and preservation of Sign Language as an independent language.

Accessing Education

• Having qualified teachers and skilled in Sign Language

• Establishment of appropriate special schools for Deaf children

• Good training opportunities for young Deaf people

• The right to access Sign Language interpretation services in all forms of educational settings

• Support the establishment of special secondaryand Primary schools for Deaf and for total communication studies.

• Securing opportunities for Deaf Teachers in schools for the Deaf

Culture and Recreation

• Establish festivals and exhibition centres for Deaf persons.

• Formation and sustenance of deaf choirs /dramas of Deaf people.

• Support of games and sporting activities of the Deaf people.

• Right to integrate in socio and cultural festivals.

Information Dissemination

• Advocate and lobby for more Sign Language programmes on Television, radio and newspapers.

• Support for the Deaf film Production.

• Right to use modern technology like the web cam.

Public Relation

• To ensure a high degree of awareness of Deaf people’s needs and rights amongst decision makers, opinion leaders, families, the media and general public.

• To ensure that Deaf people have excellent access to information about the society in and out of their community

Other resources: a directory of services for the deaf can be found at Gallaudet University: The world’s only university designed to be barrier-free for deaf and hard of hearing students. Also Deaf Link Uganda is a Deaf led organisation that operates projects in urban, semi-urban and rural areas.

See how sign language can transform lives

Watch the full documentary, 15 and Learning to Speak: Unreported World follows the inspirational work of the sign language teachers transforming the lives of deaf children and adults in Uganda

Transforming the Lives of Deaf People in Uganda

As I learn about disability in Uganda, I begin to see many common themes. Today I am reading about deafness. 

The Borgen Project describes all too familiar cultural attitudes that "contribute to the lack of urgency when it comes to deaf children’s education." The article continues describing harmful stereotypes that are associated with deafness. Where deafness is often seen 

as an act of fate or a sign of God’s punishment. Deaf children are often hidden because they are considered a source of familial shame. They may also be pitied and seen as burdensome and helpless, which can result in abuse such as sexual violence towards deaf women.
These negative attitudes generally increase the isolation of deaf children and feed into the stigmatization of deafness. Governmental policies that fail to protect the Deaf from discrimination, as well as derogatory language similar to the English phrase “deaf and dumb”, are manifestations of this stigmatization. 

There is little doubt that deaf people in Uganda are poorly understood and heavily stigmatized. SignHealth sums up the issues:

Discrimination and victimisation: In Uganda, deafness is little understood by society. Deaf people face significant discrimination and victimisation. Stigma and cultural taboos surrounding deafness mean that deaf people are among the most marginalised and disadvantaged groups in the developing world.
Isolation: Many deaf children are not taught signing skills, a language they can understand. As a result, they are unable to communicate with or understand the world around them. They are isolated, even from their loved ones, and are often abandoned by their families and communities.
Lack of education: 65% of deaf children in Uganda do not attend school or receive a basic education.
Poor health: Communication difficulties and discrimination mean that deaf people living in impoverished regions of Uganda are unable to access services to meet even their most basic needs. Lack of healthcare, for example, can have devastating consequences for vulnerable people. Abuse, victimisation and isolation can lead to behavioural and mental health issues.

Whilst these attitudes are all too familiar and rather depressing, I found this video on YouTube which cheered me up.Take some time to watch this video about a boy that has never been taught sign language and is unable to communicate with people around hin. See how being able to communicate can transform a life.