How people are excluded daily from access to information and communication

As someone who has lived with hearing loss for over four decades, I understand the challenges that come with it very well. For example, why people who have hearing loss often feel lonely, what types of reasonable accommodations are applicable, and why hearing loss can be considered a disability.

So, I would like to share my lived experience with you.

My journey began in 1977, when I was exposed to constant cannon fire during my time  in the South African Defence Force. The experience as a serviceman left me with bilateral sensorineural hearing loss. I soon discovered that I struggled to follow conversations, especially when there was background noise, and that I could no longer compete on an equal footing with other people socially, within the family, and as a professional, without reasonable accommodations. 

I tried various methods and initiatives to adapt to my new reality. For example, my family and I were advised to learn SA Sign Language, but as a previously hearing individual living and working in the hearing world, I found it extremely challenging and sometimes overwhelming. Instead, I taught myself to lip-read and watched people’s body language – I spent countless hours in front of a mirror learning how lips move, how to form sounds, and so on. As a professional, I also relied on lip-speakers and note-takers to facilitate my communication with others. My quality of communication was therefore largely in the hands of outsiders – which was extremely challenging. This type of support was also not freely available in South Africa at the time. I struggled to maintain myself in the workplace without reasonable accommodation, which led to anxiety and depression, and ultimately to me having to change careers.

How does one turn these types of obstacles and challenges into opportunities?

As mentioned, I was forced to give up a career in electronics. Keep in mind that the events took place before the new disability labour legislation was put in place in 1997.  So I decided that the only way out for me was to pursue a new career in Adult Basic Education, and then became involved in the structures of the National Council of and for Persons with Disabilities. Studying further as a deaf person was not an easy task.

In 1998, I was given the opportunity to start a radio program on disability for Radio Sonder Grense, which recently celebrated its 1,350th episode.  My research and work over the past four decades in the field of disability has focused on supporting individuals who have hearing loss but who do not use a signed language.  These initiatives have all contributed to a greater understanding of my own limitations and to being able to learn and develop new skills, in order to continue to lead a meaningful life within the community.

It is very important to distinguish between the diversity in the field of hearing loss, as well as the degree of hearing loss. It is also extremely necessary to distinguish between individuals who have hearing loss and integrate into the mainstream, and those who identify with the Deaf community and use SA Sign Language as their primary form of communication. Just being aware of this is not good enough – we need to understand the real differences and similarities so that we can develop the necessary empathy to address the interests of the diverse groups on an equal basis.

Unfortunately, after 30 years of democracy on many levels, this is still not the case in South Africa. For example, the community needs to understand why the experience of loss, disability and cultural affiliations of sign language and non-sign language users are so diverse.  However, the following human rights principle is and remains applicable, namely: one group may not make statements on behalf of another group. This is why I will never make statements on behalf of SA Sign Language users or the Deaf community. This would be contrary to the principle of self-representation as set out in the UN Convention on the Rights of Persons with Disabilities, as well as legislation and policies in SA.

People who are hearing impaired or deaf who do not use SA Sign Language form part of the larger community, use spoken language and identify with various linguistic and cultural communities.

To return to my field of specialisation – there is great concern about, for example, how untreated hearing loss is addressed in South Africa. The consequences of untreated hearing loss are serious, including cognitive decline, social isolation, lack of opportunities and reduced quality of life. 

In the Western Cape Province, for example, approximately 1.52 million citizens experience some degree of hearing loss, with approximately 456 000 identified as persons with a hearing disability. 

Please take note of the following key statistics so that you can apply them to your own environment: 

• 91 200 (20% of the estimated 456 000) use South African Sign Language (SASL).

• 364 800 individuals (80% of the estimated 456 000) do not use SASL, of whom

• 72 960 (20%) use hearing aids, and 

• 291 840 (80%) do not use hearing aids 

These approximately 291 840 persons with a hearing disability in the Western Cape Province, who are still excluded, are in urgent need of support regarding access to information and communication.

My open question to you today is: “How many people in your area are excluded daily in terms of access to information and communication?”

Recommendations that I would like to make are as follows:

• Increase funding for hearing aid subsidies and audiology services;

• Improve awareness campaigns about hearing loss

• Improve accessibility to hearing therapy for adults, especially in rural areas;

• Promote the availability of functional reports and protocols for reasonable accommodations. --> See the difference between a functional report and a clinical audiology report

  
  
  
  

• Explore alternative assistive technologies and establish accessible resource centers.

• Create accessible education and training opportunities.

• Promote the accessibility of environments, services, products and programs for people with hearing disabilities

• Promote sensitization programs about the impact of hearing loss.

• --> See impact of hearing loss on older people, their families, friends and carers

• Promote disability awareness programmes and make them applicable to people who have hearing loss.

• Promote peer support programmes. See the FanieDreams Peer Support Group

• Build support for those who are equipped with hearing aids in terms of rehabilitation and habilitation as outlined in the White Paper on the Rights of Persons with Disabilities (2015).

• Analyse the findings of the World Hearing Report (2021) and address the issue of untreated hearing loss. The harsh reality is that almost two-thirds of people over 70 years of age are people with a hearing impairment.  We cannot allow thousands of people in our country to become isolated under our “supervision”.

Challenge yourself, your immediate community, as well as the authorities to put in place, improve, and expand rehabilitation and habilitation services – something that is not yet available at all in some parts of our country.

I therefore call on policymakers, health professionals and community leaders to ensure inclusive policies, equity and funding allocations. In this way, we can create a more inclusive and supportive society for all.

Additional resources:

Brochure on the prevalence of hearing loss in South Africa

My Life Story |  "I Have A Dream"  

Photo credit: Meta AI