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Deafness: parenting a child with hearing impairment

22 September 2022 | Story Kelebogile Olivier | Photo Supplied

Opinion article by Kelebogile Olivier, Lecturer in the Department of Criminology, and Secretary of the University of the Free State Women’s Forum.

The World Federation of the Deaf declared September to be Deaf Awareness Month in the 1950s. The Deaf Federation of South Africa (DeafSA) and the South African National Deaf Association (SANDA) both promote awareness of the rights of Deaf persons in South Africa. During Deaf Awareness Week, deaf people are highlighted for their accomplishments and challenges (Deaf Awareness 2022) There growing is awareness about hearing loss, deafness, Deaf culture, and sign language. By understanding deafness and the culture of the deaf community, hearing people can better understand deafness. This year's theme is Building Inclusive Communities for all through the promotion of deafness, Sign Language, and Deaf culture. This piece is a personal reflection of my experiences as a parent of a child who has hearing loss.

Access South African Sign Language as a medium of education

The education of deaf and hard-of-hearing learners is influenced by several factors both negatively and positively. The lack of Deaf role models for deaf learners, the lack of recognition of South African Sign Language (SASL) as a Language of Learning and Teaching (LOLT), and the lack of fluency in SASL among teachers are some of these factors (Magongwa, 2010).

The education system is considering bi-modal communication. However, the challenge is finding schools where sign language is taught. A school such as Carel du Toit special school in Bloemfontein has a vision to teach spoken language and support children with hearing impairments. Therefore, it does not offer sign language as a language of education.

Baritimea School for blind and hearing-loss children is an alternative school situated outside Bloemfontein which teaches sign language. One thing about this school is that the kids learn sign language and are confident in their communication. It has an excellent teaching and learning vision which it has managed to actively reach.

The use of sign language in South Africa has advanced greatly. South African Sign Language (SASL) is set to become the 12th official language of the country after government regulations were passed recently. SASL will now be recognised by the Department of Basic Education as a home language and part of the national school curriculum in grades R-12 under the gazetted amendment. This means that deaf learners will now be able to select SASL as a home language in schools. The department has also made amendments on the passing criteria for learners who select SASL as a home language in schools.

As SASL is the first language for most members of the deaf community, these positive changes will significantly impact learners’ ability to excel in school. “This Regulation is called the Amendment Regulations pertaining to the National Curriculum Statement Grades R-12, 2022 and will come into effect on the date of publication in the Government Gazette.” A growing number of South Africans are fluent in the language, and this will ultimately lead to a more inclusive language and a greater appreciation of deaf culture.

Firsthand experience and the rollercoaster of parenting a child with hearing impairment

I found out about my son’s hearing impairment in the middle of 2018, based on pure maternal instinct. I took the decision to have him assessed by a speech therapist believing he had a simple speech problem. In that initial assessment, it was confirmed that the problem was not speech but that he has severe hearing loss. So began the journey to what felt like a million tests and hospital visits. That year alone my son was under anesthesia more than four times.

Initially, he was fitted with hearing aids, which medical aid did not cover. Other costs included an unbudgeted R30 000 the audiologist charged for the devices. He had grommets fitted by an ENT, his hearing was tested while under anesthesia, and his hearing was tested various times until hearing aids were confirmed not to be the best option for him.

Due to the severity of his hearing loss, towards the end of 2018, a decision was made to fit him with cochlear implants. With all this technology, a weekly speech therapy appointment, constant mapping, and regular audiograms, we were well on the way to a speaking child. Unfortunately, despite implants, the speech progress was delayed.

Personal interaction with the deaf community

My first experience of deaf communities and the challenges they face daily in simply trying to communicate and navigate a world that is designed not for them began in my undergraduate year module, introduction to sign language. Although some communities, organisations, and institutions of higher education have tried to move toward inclusivity, one does not need to look too deep to notice that the world is not designed for people with any type of impairment, especially in developing nations.

My experience of the deaf community felt like a mere drop in the ocean when 10 years post my undergraduate learning, I could not engage in a conversation with a deaf person. My limited experience and knowledge of deafness and the community were emphasised when my son was diagnosed with severe hearing loss. I realised there is so much to learn and navigating deafness is sometimes a lonely space, until you find even just one person to help you into the deaf society.

We are now considering bi-modal communication. In addition to working on his speech and hearing, we plan to use sign language to support it, especially for educational purposes. Although progress has been made towards inclusivity, we still have a long way to go.

Positive school experiences for deaf or hearing-impaired children

Deaf children should have the same experiences of schooling as every other child in the country. A clean school, a bright and safe playground, and access to sports facilities at the school. This alone would make a difference in how they experience the world as deaf and hearing-impaired children. Rather than the frustration they face daily, they need to have hope that this world will improve. Their safe spaces should at least be exactly that, safe!

News Archive

Higher than expected prevalence of dementia in South African urban black population

2010-09-22

Prof. Malan Heyns and Mr Rikus van der Poel

Pilot research done by University of the Free State (UFS) indicates that the prevalence of dementia, of which Alzheimer’s disease is only one of the causes, is considerably higher than initially estimated. Clinical tests are now underway to confirm these preliminary findings.

To date it has been incorrectly assumed that dementia is less prevalent among urban black communities. This assumption is strongly disputed by the findings of the current study, which indicates a preliminary prevalence rate of approximately 6% for adults aged 65 years and older in this population group. Previous estimates for Southern Africa have been set at around 2,1%.

The research by the Unit for Professional Training and Services in the Behavioural Sciences (UNIBS) at the UFS and Alzheimer’s South Africa is part of the International 10/66 Dementia Research Group’s (10/66 DRG) initiative to establish the prevalence of dementia worldwide.

Mr Rikus van der Poel, coordinator of the local study, and Prof. Malan Heyns, Principal Investigator, say worldwide 66% of people with dementia live in low and middle income countries. It is expected that it will rise to more than 70% by 2040, and the socio-economic impact of dementia will increase accordingly within this period. 21 September marks World Alzheimer’s Day, and this year the focus is on the global economic impact of dementia. Currently, the world wide cost of dementia exceeds 1% of the total global GDP. If the global cost associated with dementia care was a company, it would be larger than Exxon-Mobil or Wal-Mart.

The researchers also say that of great concern is the fact that South Africa’s public healthcare system is essentially geared toward addressing primary healthcare needs, such as HIV/Aids and tuberculosis. The adult prevalence rate of HIV was 18,1% in 2007. According to UNAIDS figures more than 5,7 million people in South Africa are living with HIV/Aids, with an estimated annual mortality of 300 000. In many instances the deceased are young parents, with the result that the burden of childcare falls back on the elderly, and in many cases elderly grandparents suffering from dementia are left without children to take care of them. “These are but a few reasons that highlight the need for advocacy and awareness regarding dementia and care giving in a growing and increasingly urbanized population,” they say.

Low and middle income countries often lack epidemiological data to provide representative estimates of the regional prevalence of dementia. In general, epidemiological studies are challenging and expensive, especially in multi-cultural environments where the application of research protocols relies heavily on accurate language translations and successfully negotiated community access. Despite these challenges, the local researchers are keen to support advocacy and have joined the international effort to establish the prevalence of dementia through the 10/66 DRG.

The 10/66 DRG is a collective of researchers carrying out population-based research into dementia, non-communicable diseases and ageing in low and middle income countries. 10/66 refers to the two-thirds (66%) of people with dementia living in low and middle income countries, and the 10% or less of population-based research that has been carried out in those regions.

Since its inception in 1998, the 10/66 DRG has conducted population based surveys in 14 catchment areas in ten low and middle income countries, with a specific focus on the prevalence and impact of dementia. South Africa is one of seven LAMICs (low and medium income countries) where new studies have been conducted recently, the others being Puerto Rico, Peru, Mexico, Argentina, China and India.

Mr Van der Poel says participating researchers endeavour to conduct cross-sectional, comprehensive, one-phase surveys of all residents aged 65 and older within a geographically defined area. All centres share the same core minimum dataset with cross-culturally validated assessments (dementia diagnosis and subtypes, mental disorders, physical health, anthropometry, demographics, extensive non-communicable risk factor questionnaires, disability/functioning, health service utilization and caregiver strain).

The local pilot study, funded by Alzheimer’s South Africa, was rolled out through an existing community partnership, the Mangaung University of the Free State Community Partnership Programme (MUCPP).

According to Mr Van der Poel and Prof. Heyns, valuable insights have been gained into the myriad factors at play in establishing an epidemiological research project. The local community has responded positively and the pilot phase in and of itself has managed to promote awareness of the condition. The study has also managed to identify traditional and culture-specific views of dementia and dementia care. In addition, existing community-based networks are being strengthened, since part of the protocol will include the training and development of family caregivers within the local community in Mangaung.

“Like most developing economies, the South African population will experience continued urbanization during the next two decades, along with increased life expectancy. Community-based and residential care facilities for dementia are few and far between and government spending will in all probability continue to address the high demands associated with primary healthcare needs. These are only some of the reasons why epidemiological and related research is an important tool for assisting lobbyists, advocates and policymakers in promoting better care for those affected by dementia.”

Media Release
Issued by: Mangaliso Radebe
Assistant Director: Media Liaison
Tel: 051 401 2828
Cell: 078 460 3320
E-mail: radebemt@ufs.ac.za
21 September 2010

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