Missing Sounds & Silent Worlds

I became painfully aware that I’ve done nothing on this website for the other members of society who have different kinds of abilities from most of us. I’m talking about what people usually refer to as People with Disabilities. Because I firmly believe that words carry an inherent power in them, I harboured a slight detestation for the word disabled in this context.

You could argue that words are nothing if not codes for meaning and there is some truth in that. But ‘there is a little truth in everything’ so, with my ‘positivity’ I set out with explicit intent to find out how to start being inclusive, armed with an umbrella phrase I decided makes much more sense to me for that segment of our society as The Differently Abled.

With a little push from the internet, I spent a good part of last week learning about those who have hearing impairments or are deaf. Except my very introduction into that world was through children. Fate would point my feet toward the only pre-school of its kind in East London.

I’m talking of the East London Carel du Toit Centre; A place where deaf children learn to speak.

The Centre’s focus is quite specific. They use an Audio-Verbal method to help close the huge gap that children with a spatial or complete loss of hearing experience in their learning of the world around them. This early intervention is backed up by the science that for the development of the auditory stimulation of the neural pathways in the brain to fire, the best time is as early as possible. Ideally under the age of three, after which chances for success greatly diminishes.

With the assistance of two hearing devices—hearing aids or cochlear implants, these children slowly get acquainted to the sounds and hearing that most of us take for granted.

If you stop to imagine how the world must appear to a child who is either deaf or experiences hearing difficulties, it’s almost unimaginable. Most of us learn language by hearing. We make sense of the words we hear or see by learning how to thread the individual sound each letter makes together. And then can we only learn to read after we’ve mastered that bit.

The biggest part of learning comes with association though. To hear the trickle of water, a mother’s voice, a bird call, a moving car and all the sounds the world contains. A deaf child doesn’t know what they don’t know.

They must initially think that everyone sees the world in pictures.

That night I lay awake thinking, trying to imagine a world in complete silence, I couldn’t. I heard my own thoughts. I wondered how deaf people have their internal monologues... in images?

“In the sleep world, in the realms of dreams, do they cross the language barrier?”

According to Mrs Katherine Herman, the Principal at Carel du Toit, hearing loss can occur in varying degrees. Children with hearing difficulties or are deaf are no different at all from others in their mental capacities. (Unless of course other conditions present) To help these children reach the learning milestones they need, audiologists and specialists from Frere Hospital with which their buildings are adjacent to form an integral part of their work.

Mild hearing means that some children completely miss hearing some frequencies. This translates to battling to hear the softer side of speech or conversations in loud environments. It can also mean that different ears process and interpret sounds differently. Profound loss of hearing means very little of sounds including speech are heard. Degrees measure loudness, not clarity such that two people with the same degree of hearing loss may have different listening experiences.

Audiologists test for, measure, diagnose and come up with an entirely personalised and effective treatment for hearing aids.

Cochlear implants are surgical procedures done by ENT (Ear, Nose & Throat) Specialists for children with both profound hearing loss or deafness.

The Centre offers a comprehensive programme that begins the long journey of helping children come into, understand and eventually habituate to the hearing world. But it’s the people around the children that have to take the first steps of acting as quickly as problems are identified. In this the Centre also excels. Below are the full services the Centre offers

“Most people typically think hearing-impaired or deaf people also have intellectual or learning disabilities. It’s simply not true. It’s probably perpetuated by the historical term with which they used to be referred— the deaf and dumb”

Says Sandiswa.

A mother who raised up a child with hearing impairment. She spoke of the confusion and lack of information she initially faced when her toddler was diagnosed at around two years of age. Their journey began at the Centre after tests at the Frere Hospital, but as a parent, she first had to equip herself with knowledge of how to help her little girl navigate in the world.

She joined weekly classes at the Centre for the support and guidance classes and the rest as they say is history. Her child, is now a university undergraduate, with as much a chance as the next person to grab the social and economic opportunities this world has to offer.

Next, my explorations led me to a meeting with Bulelwa Madikane, a Sign Language Activist and Professional Interpreter who has spent her entire life with and within the Deaf community. She studied at the University of Witwatersrand and is clearly passionate about what comes across as a calling, not merely a job. There’s a fire in her and because the demand around the country is so high, she travels around quite extensively.

According to her, there are only four public schools in the entire Eastern Cape Province that cater for the Deaf. Three of them offer schooling up to Matric. The schools are under-resourced, with totally untrained teachers and an entire system that has completely overlooked the deaf community in this country. It's a disgrace, shameful and our collective ignorance is almost a sin in the era of human rights for everyone but some.

I met a Deaf gentleman though, prepared to give me Sign language lessons for free, he resolutely refuses to be paid for his services and I am going to immerse myself into the lessons. Who better to teach me?

I met and spoke to people, who imbibed a bit of understanding of how those who live with some missing sounds and silent worlds carry their silent struggles. But it’s their amazing work that gives me joy and hope that the world still has a lot of beauty in it, including its people in all the ways God has packaged us.

I learnt that the correct and preferable way to refer to people is to say Persons with Disabilities. To be truly inclusive, I have to be in every way, starting with respect. I can’t insert my own rules to suit my weird concepts and levels of comfort.

Candidly, after spending a lot of time thinking, I now see that the term Differently Abled is quite a vague phrase! And yes, I heard on good record that deaf people dream in words just like you and me.

At Frere Hospital, The Audiologist Catherine Richter indulged me to answer and help to dispel some ignorance. Below is the entire interview between us and I sincerely thank everyone for their kindness and the time they shared to sprinkle a little goodness in it.

1. Please explain in layman terms what an audiologist does. And what does it entail? Are you a specialist doctor or a health care professional?

•              An audiologist is a healthcare professional registered with the Healthcare Professionals Counsel of South Africa (HPCSA). An audiologist can diagnose, treat, and manage hearing, balance, and related disorders, working with patients of all ages, in order to provide solutions like hearing aids, cochlear implants, prevention strategies and hearing rehabilitation. An audiologist sees patients of all ages, from new-born hearing screenings to noise protection for adults.

2. What causes or can cause deafness? In cases where one is born like that or it comes after birth. And what is more common?

•              At 23 weeks in utero, a baby is already hearing. The inner ear, known as the cochlea, which is the sensory part of hearing, is fully formed at this stage. The cochlea never gets bigger or grows, so when we are born, we have already been hearing our parents’ voices and external sounds such as music. In fact, that’s why babies calm to their mom’s voice. The cochlea is the size of a pea, and we are completely reliant on our two cochleae to hear. It is a delicate organ, susceptible to damage.

•              Hearing loss can be permanent or temporary. Permanent hearing loss in babies and young children may be due to congenital factors (genetics) or a prenatal infection such as Rubella or Cytomegalovirus (known as CMV). Perinatal and postnatal risk factors include prematurity, birth hypoxia and severe jaundice.

Other causes of permanent hearing loss in all age groups include noise exposure, certain medications such as chemotherapy drugs, severe infections such as meningitis, genetic/family history, or head trauma.

Diabetic patients are more susceptible to developing a permanent hearing loss. Smoking is also harmful to a person’s hearing. It must be noted, that while age related hearing loss (known as presbycusis) is common, hearing loss occurs as all ages.

•              Temporary hearing loss can normally be reversed through surgery or medications. Normally the cochlea is not affected. Temporary hearing loss may be caused by a blockage of your ear canal (wax buildup or a foreign body), a hole in the ear drum, problems with three small bones in your middle ear, or fluid in the middle ear.

3. What do you wish people knew about deafness?

•              The inability to communicate, whether it be from hearing and speaking or by using sign language, cuts us off from people and isolates. Communication makes us human. People who develop a hearing loss, who use spoken language, begin to isolate themselves. No one knows what it is like to have a hearing loss until you have one, as our ears never switch off.

My wish is for people to have more patience with individuals with hearing losses – to say to someone “oh never mind” when they ask for repetition cuts a person off completely from the conversation. Listening with a hearing loss is tiring and taxing mentally.

•              It is important to know that hearing loss is not an “old persons” condition. The stigma of hearing loss should be lifted. People of all ages can develop a hearing loss. Newer technology in hearing aids, only amplifies what is required.

4. What are the basics people should know or look out for as part of their general ear hygiene? Should we use earbuds for ears at all?

•              For general ear hygiene, never ever put a cotton bud in your ear. Our earwax serves a purpose to protect our ears from foreign bodies and dust. Earwax is not dirty. As is only produced in the 1st third of our ear canals, and small hairs push the old wax out, if we push anything into our ear canals, the wax will go past the point that these hairs can push the wax out.

This results in wax blockages and build up. Interestingly, earwax is bitter which helps keeps bugs out!

•              If a person has discharge or severe pain in the ear, consult a medical practitioner. A sudden hearing loss in one ear is an emergency.

5. Should we use phone speakers at all? Is it true that headphones are better?

•              Loud music via continued headphone use, can cause a noise induced hearing loss over time. If a person is sitting next to you while you have your headphones on, they should not be able to hear your music. Normally phone speakers have a maximum output that limits volume.

6. What are the statistics on deafness— provincial, national, global?

•              Approximately 12 million South Africans (20% of the population) experience some degree of hearing loss, ranging from mild to profound, with nearly 5 million having a significant disability, while about 600,000 are Deaf and use South African Sign Language (SASL).

Unfortunately, there is no Eastern Cape statistics. Globally, over 1.5 billion people live with some degree of hearing loss, with about 430 million having disabling hearing loss that requires rehabilitation, a number projected to exceed 700 million by 2050, affecting roughly 1 in 10 people.

7. I want to learn Sign language and I don't know why it's not a subject in schools. Should it be?

•              SASL (South African Sign Language) is an official language, much like English, Xhosa or Zulu. It has its own grammatical rules and requires someone to teach who is proficient in the language. It would be wonderful if schools could offer additional language options.

8. Is Sign language universal? Say... the official one?

•              Sign language is not universal. Sign language in each country have their own unique signs/grammar. For example, SASL, ASL (American Sign Language) and Auslan (Australian Sign Language).

Even within South Africa, there are regional dialects, so someone from Tshwane will have a few different signs versus a Western Cape SASL user.

9. How does a child who is born deaf and hasn't the advantage of any hearing device or Sign language think?

•              We use spoken language to communicate, so we think in words – if we have in internal monologue, it’s in our mother tongue. A Deaf person communicates through signs and gestures, so thinking would be visual imagery with signs, symbols, objects and scenes. Remember, signing is a language.  

10. How can society be more accommodative of people with deafness?

•              Patience. Understanding that the world is not traditionally geared towards people with hearing losses – inclusivity and awareness is key.  Generally, get the attention of the person you want to talk to, make sure they can see your face, minimise background noise, ensure adequate lighting, rephrase what is not understood and avoid covering your mouth.

Just because a person has not heard correctly or answers inappropriately/wrongly, it does not mean they did not understand.  Understand that hearing loss leads to isolation, which for many, results in feelings of depression and lack of cognitive stimulation.

•              For teachers of children with hearing losses, it is important to work closely with the learner’s audiologist, speech therapist and parents to maximise success in the classroom.

11. What is in the pipeline regarding the new technologies in healthcare? How will it solve deaf people's needs? Will it take away the need for Sign language?

•              Cochlear implants have revolutionised the hearing health world. For severe or profound hearing losses, the majority of children who were unable to access sound to develop speech, are now able to do so. However, this requires a dedicated team of parents, family, speech therapists, audiologists and other professionals. It is ultimately the family’s decision if they would like to pursue a cochlear implant, with many factors involved.

Parents who are Deaf, may want their children to go and develop in the Deaf community. Others may be wary of surgery. The cost factor also comes into play, with one implant and processor starting at R244,000.

It must be noted that there is a definite criterion for cochlear implants including the age of the child, anatomical aspects and previous access to sound. It is not a one size fits all process.

•              There has been research into gene therapy that may restore the damaged areas of the cochlea, however this is very early days.

•              Sign language will always be valued and used, to take it away would be a loss of culture and identity. It is more than a language.

12. With my own website, what should I be doing to cater for deaf or hearing-impaired people? (If you know)

•              Uncertain

13. Most of us know the Helen Keller story... or an idea of who she was, do we have our own local heroes we could write or talk about?

•              Mia Le Roux! Our first deaf Miss South Africa. Terence Parkin is an Olympic swimmer. Local East Londoner Mark Roach swam in the deaf Olympics recently (bilateral cochlear implant user)

14. Could I have my ears checked? I have a few ear issues.

•              If anyone needs to see an audiologist or ENT, they can get a referral from their local clinic or GP, or any healthcare provider such as a nurse.

15. Are vertigo issues connected to ear issues?

•              Yes – our vestibular and hearing nerve are connected.

16. What is the one crucial question I should've asked you and I haven't?

•              What is the impact of hearing loss in school aged children?

           World hearing day is held on 3 March every year. This year’s theme is “From communities to classrooms: hearing care for all children”.

According to WHO, untreated hearing loss affects a child’s ability to hear but significantly impacts speech, language, cognitive and social development, commonly leading to poorer educational outcomes, reduced employment prospects and long-term economic disadvantages.

Can you imagine the very first moment a deaf child hears, sees and associates their own name with and to themselves?

Till we meet again.