Finding help as an adult with dyslexia ’an uphill battle’
Johannesburg - Rethabile Mokoena is among an estimated one in ten South Africans living with dyslexia, a neurological disability that is often hereditary and is associated with difficulties in reading, writing, spelling and organisation.
The 30-year-old says she is at her wits’ end, after exploring every possible avenue that could have helped her. She admits to constantly hitting a brick wall when she sought help because she is now older than 21 years old.
She was diagnosed with the condition at 17 years old. Since then, she has struggled to secure the correct treatment. It has limited her upward mobility in the job market. She works at a local fast-food joint.
Even though she is able to earn a salary, she says her ambitions have been limited due to not being able to get the necessary help when she was younger and now, in her young adult years, she feels left in the wilderness.
“I’ve tried getting in touch with so many government institutions for help but nothing has come through for me. I’m told that I am either too old to receive help or there is no help whatsoever.
“I, unfortunately, cannot afford a private institution or clinic because I don’t have the money and, well, government health workers look down on me, because you can tell they have no idea what dyslexia is or what to do with me,” she says.
Her biggest frustration is that while help is now given to children, young adults and the older are left with no aid in South Africa.
While Rethabile may feel isolated in her journey, the founder of VelaNjabulo Foundation in uMlazi, Durban, Njabulo Mabaso, says the rate of depression and suicide as a result of frustration is a clear indication of how many people feel left in the wilderness to fend for themselves.
Mabaso’s journey is no different from that of Mokeona’s, except that he ended up attempting suicide.
“At that point I felt like I had no option but to die because I went to every governmental organisation you can think of and no help was afforded to me,” he says.
“And that is unfortunately the same narrative that still exists today. Once you leave the school system, you find that there is no formal support for people with learning disabilities like dyslexia, dysgraphia, dyscalculia and dyspraxia, leaving you to fend for yourself. You cannot enter an institution of higher learning due to systems created by our government which are uneven for us to pursue our studies and dreams, compared to our counterparts,” he said.
Mabaso adds that this kind of learning disability is largely also misunderstood in the African context, especially because it is an invisible disability, and one can end up being called hurtful names like “stupid”.
“We don’t even get social assistance, we are unemployed and therefore have become a silent killer within society. Even with the few special schools that do exist, there is no standardisation with the level of education you receive. When we are out of the school system with either level 4 or 6, corporates don’t understand how to treat us or place us.
“Not much has been done to help remedy this gripping disability. The few conversations that are had are outside of us and we need to be part of the conversations,” he said.
Sandra Stark, chairperson of Red Apple Dyslexia Association, concurs with Mabaso that more work needs to be done to address the lack of information about the disability.
“Just as much as you cannot expect someone who is in a wheelchair to walk up a flight of stairs, you can’t expect a dyslexic to read and write on their age-appropriate level.
“There is no way one wants to be dyslexic or chooses to be. And it is also important to note that if we do not have a diagnosis, we can’t do something about it.
“Therefore, it is important to avail yourself of information and opportunities for diagnosis to help assist those affected,” she says.
“Having seen many success stories, I do believe that there are opportunities for dyslexic people to advance themselves even at university level.
“More awareness is needed to help create conducive environments for them.”
As November is Disability Month, Stark says it is important for society to be aware that dyslexic people are not stupid and that they think outside of the box.
“We need to realise that they are in fact an asset to anyone’s business or classroom, because they bring something different to the environment. They are creatives,” she says.
“It’s most important that if anyone feels there is a problem they go to get checked out. Diagnosis is pivotal.”