Being deaf presents challenges in any society, but in Uganda, amid the AIDS pandemic, missing out on sex education lessons at school can be deadly. Joanna Clark, director of Deaf Child Worldwide, discusses the charity’s work in the country.
W hispering in the corridor. Sniggering in the classroom. Sex education lessons. That serious talk with the parents.
These uncomfortable rites of passage could have changed Hester’s life.
Just learning simple facts about the birds and the bees would have taught her about birth control and sexually transmitted diseases. But Hester is deaf, and she missed out because no one, not even her friends and family, knew how to communicate with her.
Now Hester is pregnant and HIV positive, and has been left on her own – isolated, unable to communicate with doctors and fearful for her life and her unborn child’s future. With no support, her chances of survival are bleak.
Deafness is the most common disability in Uganda, affecting 360,000 under-18s. Poor communication lies at the heart of the problems deaf young people face. Growing up deaf means that they miss out on conversations and education about relationships, pregnancy and sexually transmitted diseases because their peers, teachers, health workers and counsellors are often unable to effectively communicate with them.
With AIDS-related illnesses the leading cause of adolescent mortality in Africa, this lack of understanding can be deadly. The Ugandan government recently undertook a major government campaign to educate teenagers about sexual health – but as this was mainly through TV adverts, deaf young people missed out on this vital information and advice.
Deaf Child Worldwide, a charity founded in 1998 as the global arm of the National Deaf Children’s Society, is working with a network of skilled partners in Uganda to ensure deaf young people get the vital sex education they need to live healthy, independent lives and achieve their potential.
Twenty-three year old Annet is one of many ‘peer educators’ on the charity’s Birds and the Bees project. Deaf Child Worldwide and the Uganda National Association of the Deaf provide training in sign language and communication skills, and teach deaf young people about relationships and sexual health so that they in turn can advise and support others.
With more than 40 indigenous languages in Uganda, many people use local dialects rather than official Ugandan Sign Language, so Annet often uses role plays and drama to share her newfound knowledge. Peer educators show other deaf young people how to use condoms, explaining about pregnancy and sexually transmitted diseases.
Peer educators report that there are many unwanted pregnancies among deaf young women - unsurprising given their higher risk of abuse, and the lack of deaf-accessible sex education. While abortion is illegal in Uganda, many see no other choice.
Miriam, a peer educator and specialist Teacher of the Deaf in capital city Kampala, says deaf young women often ask her for advice about unwanted pregnancies – but she doesn’t always have the answers, and risks being arrested if she tries to help.
Miriam shared the story of one student who got an abortion privately and said it was so painful that she almost died. She had to teach the girl about condoms because her parents had left her to fend for herself, something which Miriam says happens all too often. There is still significant stigma around deafness in Uganda, with many parents perceiving it as a curse and abandoning their deaf child.
Miriam explained that although deaf children can learn sign language at school, a lot of parents aren’t interested in using it at home and make no effort to communicate. In Uganda, 65% of deaf children do not attend school, which Miriam thinks is because parents underestimate their abilities and do not take an interest in their education. It is a widespread cultural misconception that deafness is a learning disability; deaf people are often called ‘kasiru’, meaning ‘stupid’.
This lack of access to education makes it harder to find work – and if they do, many are exploited because they do not understand their rights. This often takes the form of economic exploitation, with deaf young people denied jobs because of their disability, or sexual exploitation as they are seen as easy targets. Perpetrators take advantage of the deaf, knowing that communication barriers mean they will be less likely to be caught.
For example, Martha is a qualified lab technician but struggles to find work because of the stigma around deafness and the exploitative attitudes of employers. In her first job, they agreed a salary, but at the end of the month the doctor refused to pay her unless she had sex with him. This went on for three months until Martha got a different job - but the same problem followed her.
“The doctor asked me to go with him in his car to get my salary. I really thought he was taking me to get money but then he started to touch my thighs. I knew something was wrong so I managed to run away. The hearing girls all got paid but he tried to take advantage of me. Employers think they can do what they like because we are deaf.”
Martha said sex education in her hometown of Jinja is non-existent for deaf people, with clinics giving out free condoms but no deaf-accessible explanation of how to use them. Many deaf young people confuse the contraceptive injection with an immunisation, as doctors and teachers lack the sign language skills to explain the difference. Volunteer groups often run workshops for disabled people, but these tend to be geared towards those with physical disabilities and not accessible for deaf people.
Expanding on these issues, 21-year-old Betty added: “We hear there's an injection that prevents you from getting pregnant but we don't know much about these things; the hearing know about this but we don't. Very few of us understand the details.”
Interpreters can be hired to accompany deaf people to medical appointments, but the costs are high and this adds an extra element of social discomfort for young people when discussing sensitive topics like their sexual health. Even with an interpreter, things can be unclear, as many deaf young people are so poorly educated that they struggle to understand the words doctors use.
Twenty-four year old Silvia, another deaf young woman from Jinja, explained: “Even though we are sexually active, many of us are ignorant about HIV and AIDS. The nurse might say you're negative but me, I don't know what that means. Does that mean I'm safe?”
The risk of HIV and AIDS is something youth leader Christine, 21, understands all too well. Having completed sign language training and sexual health workshops, she now works for Deaf Child Worldwide partner SignHealth in Masaka, using this knowledge to identify and support deaf young people in her local community.
Christine heard about a local deaf young woman and her baby son who had both been feeling ill. Having learned about HIV and AIDS, Christine quickly saw the warning signs. Neither knew sign language so she used informal signs to communicate with them. The woman had been raped and the culprit, the father of her baby, had run away.
Christine helped refer them to hospital, where tests found both mother and baby were HIV positive. They were helped to access medication and support, and Christine visits several times a week to check they are taking their ARV drugs properly and to teach them sign language and communication skills.
A recent survey in Kampala on HIV and AIDS saw large numbers of deaf young people going for testing, thanks to the advice and guidance of Deaf Child Worldwide’s peer educators.
Twenty-five year-old Innocent was the first member of the Kampala Youth Group and has worked hard to grow it, recruiting around 90 young deaf members so far. He is well known in the community as a source of support, knowledge and advice. On several occasions, deaf young women have turned to him for help after being abused, and he has supported them to communicate with doctors and police.
As well as helping to educate others, Innocent says he has grown in confidence and found a new sense of purpose through his work on the Birds and the Bees project. He commented: “What I feel is that I’ve brought a change in the community. We must fight for our rights, but you can only fight for them if you know them. I see deaf young people remember all the information I’ve shared with them from training and then see them helping each other - that makes me proud.”
To find out more about the Birds and the Bees project and the wider work of Deaf Child Worldwide across the globe, please visit www.deafchildworldwide.info.