For many people, a hearing aid is simply a device that helps someone hear.
For a DeafBlind person, it can mean much more.
It can mean being able to follow a meeting, have a conversation with family, receive information, take part in everyday activities and live more independently.
That is why, for DeafBlind people, access to a hearing aid is not necessarily the same as access to participation.
One of our valued members has agreed to speak openly about his experience of gradually losing his hearing and seeking the right hearing support.
His answers are direct. There is no need to add many words to them. They tell us something important about what happens when hearing begins to place limits on a person’s ability to communicate and participate.
When Hearing Begins to Change
When he was born, his mother noticed some greyness in his eyes and sought medical advice. Although she was initially told not to worry, she sought a second opinion, which eventually led to an operation at Groote Schuur Hospital. He completely lost his sight as a result.
For many years afterwards, his hearing was very good.
Then it began to change.
He remembers first noticing difficulties after attending a concert at Soccer City Stadium in 1991, where he sat not far from the speakers. He later experienced another incident when a ginger-beer-filled bottle exploded while he was asleep during a hot summer day in Worcester.
Today, he describes his hearing as gradually declining.
And the effect is immediate:
“Communication becomes very difficult.”
When People Think You Are Ignoring Them
Being DeafBlind means dealing with the combined effect of hearing and vision difficulties.
For him, this means losing proper communication, as well as affecting his sense of direction and balance.
When he cannot hear someone clearly and cannot see them, he says:
“I get very frustrated.”
Other people may not understand what is happening. They may think he is ignoring them.
His hearing affects communication with his family negatively and can cause conflicts. With friends, colleagues and other people, he says communication is also badly affected.
And sometimes he is simply left out.
“Yes, a lot.”
What does he wish people understood?
“They should speak clearly and not shout.”
Good hearing means gaining more information and being able to communicate freely.
It also means having the opportunity for the ordinary moments that connect people.
“We sometime should have a happy conversation.”
These are short answers, but they say a great deal.
The Cost of Being Able to Participate
He needs a hearing aid to improve his hearing. He hopes that better hearing will help him communicate better.
He wants to hear discussions in meetings, music and radio.
Most importantly, he wants to receive the right hearing aids.
Then comes the cost.
When he learned that a pair could cost R17,000, his response was:
“My dream of getting a pair became shattered.”
R17,000, he says, “sounds like a lot of money.”
When someone needs something but cannot afford it, the choices can be stark:
“Forget about it, or try other means of obtaining it.”
And when the hearing aid a person needs costs more than they can afford?
“I go for a cheaper option, if only it will meet my hearing needs.”
This is one of the hidden barriers behind access.
A device may exist.
A person may need it.
But if the person cannot afford the support they need, the opportunity to participate can remain out of reach.
The Right Device Matters
For our member, getting a hearing aid is not enough.
The hearing aid should suit the individual.
The person helping should consider the cost, the quality of the hearing aid and the person’s level of hearing.
And the person who will use it should have a say.
Why?
“Because he is the one who will be using it. Who feels it, knows it.”
That simple statement carries an important principle:
The person using an assistive device must have a voice in deciding what is right for them.
For a DeafBlind person, there is another important consideration.
“He/she should understand that I am deaf blind not just deaf.”
The right support has to take the whole person into account.
What DBSA Has Seen
This is not an abstract issue for DBSA.
As an organisation, we have seen the impact that his hearing difficulties have had on his everyday interactions and participation. We have seen his reactions and the circumstances that arise when communication becomes difficult.
That experience matters.
It reminds us that hearing loss is not only about missing sounds. When communication repeatedly breaks down, it can affect how a person interacts with others and how effectively they can participate in the situations around them.
For this reason, DBSA chose to support this member in seeking appropriate hearing support.
DBSA is not a medical aid and does not provide hearing aids as a general benefit to anyone who applies.
Our role here is about supporting a member where appropriate and recognising a practical barrier to participation.
For him, better hearing has the potential to improve communication, participation in meetings and everyday activities, and independence.
That is the reason this story belongs in Beyond Access.
Hearing Is About Participation
When asked what being able to hear means for his ability to participate in everyday life, his answer is:
“Independence and living my life to the fullest.”
Without proper hearing, he could miss daily activities, meetings and ordinary conversations.
Better hearing, he says, would mean:
“Free participation in all daily activities.”
This is why we need to look beyond the device itself.
The question is not simply:
“Does this person have a hearing aid?”
The more important question is:
“Does this person have the hearing support he needs to participate?”
Those are not always the same thing.
A Bigger Message
Our member also wants society to challenge the assumptions that still surround DeafBlind people.
He wants people to understand that DeafBlindness exists and that people are becoming DeafBlind every day.
He also wants to challenge the perception:
“The perception that, if you are deaf you are dumb and if you are blind you are stupid and that if we are deafblind we are not being employed because of our disability. That should change.”
It should.
Because DeafBlindness does not remove a person’s ability to contribute, communicate, work, participate or make decisions about their own life.
And assistive devices are not luxuries when they are necessary for participation.
His message to funders, organisations and government is clear:
“Hearing aids are not a luxury but a necessity.”
Beyond Access
Access is not only about whether something is available.
It is about what that access makes possible.
For our member, better hearing means the possibility of communicating more freely, participating more fully and living more independently.
It means breaking through some of the restrictions that poor hearing has placed around his everyday life.
And when asked what being able to hear means to him, he does not give a long explanation.
He gives one word:
Freedom
For him, that freedom is not abstract.
It is the freedom to communicate.
To participate.
To belong.
To contribute.
To live life more fully.
That is what we mean when we talk about Beyond Access.