BIG READ: The wall of silence

Hearing loss, difficulty, impairment or deafness affects surprisingly many people around the world — 430-million, or 5% of the worldwide population, according to the World Health Organisation’s (WHO) February 2024 data, a proportion projected to rise to 7% in the next 25 years.

The WHO’s numbers for SA, compiled in collaboration with Prof De Wet Swanepoel of the University of Pretoria, reflect a significantly higher incidence; 12.1-million South Africans, more than a fifth of our population, have some form of hearing loss. The 2021 World Hearing Report gives an amalgam of contextual factors contributing to this: occupational safety issues; poor access to general health facilities; and a low incidence of specialist healthcare providers, including ear, nose and throat (ENT) surgeons, audiologists, and speech therapists. (SA has 4.6 ENTs and 8.3 audiologists respectively per million population, above the average for the continent but “still severely inadequate,” says Swanepoel.) The report also includes an image of a soccer fan blowing a vuvuzela — not at all an attempt at light-heartedness.

Identity and culture

Tuning into the experiences of people who are deaf or have hearing loss starts with understanding a segmentation.

Broadly, there are two segments of deaf or hearing impaired people, each choosing a different way to relate to society. People who identify as Deaf prefer “not to be defined by a disability or labelled by a medical condition”, says Jabaar Cassiem Mohamed, provincial director of Deaf SA. They may use some form of hearing technology, but generally not, preferring sign language and insisting on cultural recognition — thus the capitalised Deaf.

The other segment of deaf people do not identify separately nor relate to Deaf culture, seeing themselves as interlocked within broader society, explains Fanie du Toit, senior specialist for hearing impairment and deaf affairs at the National Council of and for People with Disabilities (NCPD). Comprising 88% of South Africans with disabling hearing loss, they accept and relate to terminology like “deaf” (lower case), “deafness”, “hearing impairment”, and “people with disabilities”. They may speak sign language in interactions with Deaf people, but more often than not they don’t rely on signing, and use hearing technologies if they can access them.

Hearing aids come in diverse forms. Significant technological progress has been made in recent decades. Generally, they are now smaller, thus less invasive and barely noticeable to others; customisable in shape and thereby more comfortable, their functionality less subject to distortion; and include features that enable adjustments to match a particular environment. Bluetooth connectivity allows for easier telephone communication and a better TV viewing experience, for example, and the incorporation of artificial intelligence (AI) refines the hearing experience for the user’s context and preferences, such as by learning to prioritise and uplift their family’s voices.

Nevertheless, hearing aids remain challenging for most people who need them. They are finnicky, requiring dexterousness; are battery-intensive; and need regular cleaning with specialised equipment.

And they are very costly. Medical aids usually pay something, and the SA Revenue Service (Sars) allows disability rebates, but for most South Africans hearing aids may cost more than three year’s earnings, forcing a decision to try to cope without one.

A cochlear implant works differently. In many respects it is an example of medical innovation and technology at its finest. Conceptualised in the 1950s and first implemented the following decade, it is now a common medical solution for people, including children, with severe inner-ear damage for whom hearing aids help barely or not at all. A sound processor is worn externally behind the ear, just below a transmitter that sends signals to a receiver surgically inserted under the skin. The signals stimulate the auditory nerve via electrodes which are threaded within the snail-like inner ear cavity, the cochlea.

Heartwarming stories of cochlear implants abound. Michele Tonks’ daughter had a cochlear implant in one ear at the age of 27, and in the other two years later. “It was life changing for her,” says Tonks, “especially how she became more social.” Tonks has bittersweet emotions: “This new connectedness made me so happy, but as a parent I wish I had explored the options earlier as it would have made her life so much better.” However, there is a complex, unnerving and ongoing debate about the fuller implications of cochlear implants. Many in the Deaf community are dismayed that they are seen as having a disability that needs to be medically fixed, rather than celebrated for their unique culture. Further, because about 90% of deaf children have hearing parents, there is a fear that in the future the prevalence of cochlear implants will increase, making the decline of sign language inevitable and thus threatening the disappearance of Deaf culture. Deaf culturalist and Monash University philosophy professor Rob Sparrow argues that cochlear implants may even represent minority oppression which, in an authoritarian, dystopian future, could extrapolate. “Curing” deafness, in this scenario, could spiral into cultural ethnocide, he believes.

It’s not a coincidence that in US sign language, the sign for a cochlear implant is a two-fingered stab to the neck. A literal translation is “vampire”.

Causes and reflections

Sudden hearing loss strikes between five and 27 out of 100,000 people annually in the US — a number likely to be much higher in middle- and low-income countries. The main cause of sudden hearing loss is a viral infection, but head trauma and adverse reaction to medication are others, as is even brief exposure to noises above 100 decibels like train sirens, nightclub and entertainment venue music, and personal listening devices. (Sound above 120 decibels can cause immediate harm.)

Celeste Leveson, audiologist and MD of hearing services practice Frances Slabber & Associates, is reluctant to be drawn on whether listening practices — very loud music, AirPods, earbuds, headphones — are likely to see a high incidence of hearing loss in the future among today’s younger generations. But the WHO estimates that more than 1-billion young adults are at risk of avoidable, permanent hearing damage attributable to unsafe listening habits.

For most people affected, hearing loss is gradual. In retrospect, Van der Spuy Brink understands that he suffered phased hearing loss, mainly attributable to repeated exposure to blasting and drilling while working as a mining geologist. He woke up one morning after a bout of flu and seemed completely deaf in one ear, prompting him to visit an audiologist. Denial was his first emotion. “This can’t be true,” he remembers thinking about her assessment that he needed a hearing aid for one ear and was a candidate for a cochlear implant for the other.

Similarly, Jo Beretta believes his hearing deteriorated over a period of 20-30 years. Unknowingly, he was adapting by lip-reading, his brain filling in the spaces. When he eventually consulted an audiologist for tinnitus he was shocked at her assessment that he was hearing only one out of every seven words.

Beretta soon got appropriate hearing aids — at a cost of more than R100,000, of which his medical aid covered nothing. The real cost of his hearing loss, however, was incalculable: “Missing sounds led me to distance myself from conversation, from people. Looking back, this cost me my marriage.”

Some people are affected very early in life. Jessica Combrinck was born with profound hearing loss. However, she grew up with the perspective of deafness being normal, because both parents and sets of grandparents are Deaf. This is known as generational deafness; in her case, third generation.

Her 10% residual hearing is enough for powerful hearing aids to help, but she speaks SA sign language (SASL), having learnt that as a first language, and now switches between it and English depending on the situation. Forthright about why she identifies as Deaf, “too often deafness is seen as something that must be remedied”, she believes, which implies a sense of “denial or unacceptance”.

Combrinck fully appreciates why some people with hearing loss don’t identify as Deaf, “and that’s OK”. But she points out that the Deaf have had to fight for decades to achieve equal rights to education, to have their voices heard rather than being overridden by the medical profession on relevant healthcare issues, and to be recognised as a linguistic and cultural community. “Yet, while we now have these rights on paper, it hasn’t necessarily translated into reality for so many,” she says.

Deaf or hearing impaired people are resilient, adapting to challenges. Combrinck has shone academically, garnering two honours degrees. Now a part-time lecturer at the University of Stellenbosch, Brink finds it difficult to field questions from students in lecture theatres that reverberate sounds. So, perhaps bravely, he is transparent with students about his impairment, and other students know to quieten when he moves close to the questioner. Socially, any busy venue, restaurants especially, tax his ability to participate, despite his hearing aid and implant.

A childhood illness left beauty salon owner Shirley Wallace deaf in one ear. Never having worn a hearing aid, after a lifetime of habitual adjustments to how she interacts with others, she manages without fuss. “My family know to look directly at me when they speak, and enunciate clearly. And to position people I like on my good side at dinner parties, and those I don’t on the other,” she says.

Indeed, humour shines through as a coping strategy for many. Echoing Wallace, Brink battles with “Paul Kruger-style beards that hide lips, or when people speak like politicians — too fast, and looking away”.

Cognitive implications

Those of us with normal hearing should consider the strong possibility that deafness may affect us in later life. Like all senses, and the human body, the propensity to lose hearing increases with age.

Leveson points to the growing body of research showing that impaired hearing is closely associated with, and is one of the causes of, cognitive impairment, decline and brain atrophy. Mild hearing loss doubles an elderly person’s risk of dementia; severe hearing loss quintuples the risk. Other neurodegenerative diseases, known as tau pathologies, are also linked to deafness.

The cognitive development of children is also close to the heart of audiologists such as Leveson. Not being able to hear creates a range of developmental and learning disadvantages. There is a dearth of teachers qualified to teach deaf children; mainstream schools in SA rarely accommodate by, for example, hiring sign language interpreters as needed in classrooms.

Societal costs

The societal burden of unaddressed hearing loss is stark. For Africa as a whole, the lack of mitigative and preventive actions accounts for an economic burden of $27.1bn/year, the highest of any region. Conversely, bringing more people into employment spurs greater productivity, and scaling overall hearing improvement services by less than $2/ person a year is projected to leverage a tenfold economic return within a decade.

So, in tandem with governments, business has both a responsibility and a reason to forge opportunities for hearing impaired people. Corporate human resources and procurement decisionmakers will be familiar with the Broad-Based BEE Act (B-BBEE), which includes provisions intended to advance workplace inclusivity and opportunity for people with disabilities.

Businesspeople know that empathy is no longer a buzzword, but a critical EQ-related leadership attribute. Given the situational disagreement between the Deaf community and the deaf or hearing impaired, whose voice, which organisation, should they heed? The two main organisations, Deaf SA and the NCPD, are frequently at loggerheads about where legislative initiatives should be directed. This plays out in the corridors of policymaking but is more immediately felt in shaping the attitudes of and solutions for people with hearing loss.

While Du Toit is passionately committed to the NCPD’s stance, he is respectful of the advocacy and work Deaf SA does for the community it represents, and is adamant that Deaf people are entitled to self-identify as a culture, including their emphasis on sign language. But there is a hint of his exasperation at how Deaf SA claims to negotiate for all hearing impaired people, even though its views speak for only 12% of those within the spectrum of severe sensory hearing loss.

The NCPD does admirable work, including media campaigns, lobbying for public policy change, forging support networks and business outreach through its disability equity training courses.

In certain respects, Deaf SA emphasises the same agenda. Its work, too, is admirable, epitomised by its success in getting SASL recognised as an official language in 2023. This was the legal pinnacle for the organisation’s agenda, but it has a wider strategy. Cassiem Mohamed itemises an impressive schedule of programmes and priorities, including more schools for Deaf children, accreditation for courses conducted in SASL, advocacy for job creation and opportunities, and corporate awareness-building aimed at accessing CSR budgets.

Two things can be simultaneously true. The respective positions of the NCPD and Deaf SA are both right. The politicking proves that the Deaf, and people who are deaf or hearing impaired, are utterly human, sharing traits and quirks of personality just like those of us with normal hearing. Could there be greater collaboration? Do they sometimes lose perspective of their mutual, bigger picture, that of changing society’s ignorance or carelessness towards Deaf and deaf people?

To get an objective peek into how this plays out in practice, a recent Pretoria high court judgment is illustrative. In rejecting the NCPD’s legal motion demanding that Icasa institute a policy of real-time open captions on TV stations’ news broadcasts, it betrays how government policymaking, statutes and regulatory codes weigh the interests of SASL speakers at the expense of the overall hearing impaired section of society. Because SASL is recognised as an official national language, Icasa is mandated to include its use in news bulletins. It has done this for many years, so, the court ruled — albeit partly on technical grounds — that Icasa’s existing code and its implementation adhered adequately to the gazetted 2016 white paper on the rights of persons with disabilities.

But SASL is used by only the minority of hearing impaired people, whereas captions would enable all people with hearing loss to watch the news. So this surely cannot be accepted as a satisfactory outcome.

It’s an example of how, despite our progressive constitution, in practice there is a “violation of the human rights of persons who are hearing impaired or deaf and do not use SASL,” says Alex Msitshana, NCPD national chairperson.

Zooming out, a perspective is that though they have fundamental attitudinal differences, there is a core overlap in the demands and expectations of both bodies: fairness, respect and commonsensical consideration for those with hearing loss, requiring straightforward interpersonal and workplace adjustments on the part of those with full hearing capability.

And so the error, or omission, lies within an unaware or intolerant society that lacks the impetus for genuine inclusivity. Would it be so difficult and involve such cost for mainstream TV news broadcasts to scroll simultaneous open captions?

I Love Coffee in Claremont, Cape Town, is both true to its name and an unusual business. Like any well-frequented bistro, it buzzes with activity — but the service is almost entirely silent, as is the open-plan kitchen and bakery. Most waitrons identify as Deaf, as do many of the bakery and kitchen staff. A small totem on each table indicates customers’ needs: red side up is a visual cue for service, after which patrons turn it green side up to indicate “All good, thanks”.

Owner Gary Hopkins opened the venue in 2016 to proactively create job opportunities for the Deaf. I meet a few of the staff, though cursorily, because they are happily busy and because signing names is one of the trickiest aspects of the language. Hopkins tells me that the Deaf community routinely adopt fun shortcuts — visual nicknames, essentially — when they know and are comfortable with one another. His staff would glide their hands over their heads to name him: Baldy, which he wasn’t particularly pleased with. Geliano, the barista with long eyelashes, is called Lash with a quick, curved flick of the index finger under the eye.

Ultimately, I Love Coffee is no different to any other coffee shop, restaurant or service business. Employees here collaborate just like any other workforce. That’s the point, Hopkins notes. Deaf people — all hearing impaired people — want what we all do: an opportunity, some training towards purposeful work, the chance to pursue individual dreams.

There is one thing, though: my cup of coffee is far superior to any I’ve had, anywhere in the city. I thank the barista, signing, with Hopkins’ guidance, “The coffee was delicious.” Geliano beams.

• Disclaimer from the writer: For 15 years my mother has been very hard of hearing. Her circumstances have given me a small window into the impact of deafness. I have sought to augment this with research and interaction with many people, whom I thank.