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Musician gets candid about struggle with glaucoma

2021-05-14  Aletta Shikololo

Musician gets candid about struggle with glaucoma
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Local musician Alvara Lucungo has become one of the few local artists who have spoken out in the hope of destigmatising disability and more by opening up about their own struggles.

Lucungo started song writing in 2018 but officially joined the music industry in 2019 after releasing her first album, titled ‘Fin’.

In an interview with New Era, the 18-year-old RnB and Afro-soul artist opened up about her battles with glaucoma and has also spoken out against the daily injustices faced by people with the condition.

Glaucoma refers to a build-up
of pressure within the eye that causes damage to the optic nerve.

“I was diagnosed with glaucoma at birth. It is congenital because I got it from my mother,” she said.

According to Lucungo, the emotional aspects of living with glaucoma are real but often overlooked. She said the disorder can affect people’s emotional and psychological wellbeing, with many people reporting feelings of anxiety, embarrassment – and to an extreme extent, depression. Born and raised in Windhoek, Lucungo faced her
fair share of bullying and discrimination from a young age.

“When I started school, I felt discriminated against because the teachers were not keen on having me in their class. They felt like they didn’t have the means nor equipment to facilitate a child with a visual disability,” she explained.

Although she was convinced to go pursue her early education at the school of the visually impaired, Lucungo said the school did not have proper equipment besides the Braille typewriters.

“I believe they have improved now but when I was there, that was the predicament and we were not taught,” she added.

Asked what motivated her to speak out about her condition, the well-spoken Lucungo said, “I am tired of seeing what is going on. Time upon time, we make initiatives to complete day-to-day activities like going to school and we keep getting turned away; it feels like we are not even welcome in our home country.” She added: “It is not fair that I had to fight for rights that everyone has, for example, the right to education, which is a policy I feel Namibia strongly believes in.”

Recently, Lucungo mentioned she was also turned away from pursuing her studies at a local national institute because of her condition. “I was told they would not admit me because they did not
have proper facilities to facilitate someone with a visual disability like my own,” she said sadly. Lucungo completed high school through the Wolsey Hall Oxford (an international home-schooling system) and is studying counselling at Philippi Trust Namibia.

“It has been a concern from my physician to proceed with higher education because the workload could be a lot and it could strain my eyes and potentially worsen my condition. However, I would decide to go back to school because, unfortunately, in Namibia, there is no place that can hire me without proper credentials or experience,” she said, adding that living with a disability on its own will also add onto that, which will lessen the chances of her getting a job.

Calling for help

Lucungo has called on the government to prioritise and ensure improved livelihoods for people living with disabilities.

“I was at the ministry of gender equality not too long ago and they are currently facing a backlog that has been affecting the disabled community ever since 2019. So, I saw this huge room packed with applications – and unfortunately, there are not enough funds to approve these applications and to start paying out to these people,”
she stressed. Lucungo said she applied for the disability grant last December and although it was approved in January, she is yet to receive it.

Speaking from her experiences, the singer hopes her call to help does not fall on deaf ears.

The ‘UC’ hitmaker encouraged people living with visual disabilities to keep their heads held up and not to give up hope. “Remember, you are not alone and it is easy to feel you are because few people are keen on speaking up about disability in general because I believe the stigma around being disabled is still very much alive but I want you to understand there are people willing to voice the problems that we have been going through so we can see change,” she advised. 

Another glaucoma sufferer, Selma Enkali (28), has also been living with glaucoma since her teenage years. She was diagnosed with the condition late after a fluid build-up in her eye had already damaged her optic nerve.

“It is known as a silent thief of sight because there are no symptoms in the early stages. So, I advise people to go for regular eye check-ups,” she said.

Speaking to New Era local ophthalmologist and eye specialist Victor Shikumeni said there is no cure to the condition but only treatment options.

“Regular eye exams can help ophthalmologists diagnose this disease before you lose vision because once lost, you can’t regain it,” he said.

- ashikololo@nepc.com.na


2021-05-14  Aletta Shikololo

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