Being a disability awareness advocate: Woman shares bond with blind son on social media

Nothing can fully prepare one for parenthood. 

First-time parents often understand that they should brace themselves for the challenges, expected or otherwise, that come with welcoming a new member to the family.

But when you find out that your baby is blind, what happens then?

This was the reality of Singaporean couple Koh Wei Shi, 34, and Eric Koh, 35, in 2020, when their son, Elliot, was born.

It took them a while before they realised something was amiss.

Wei Shi recalled how Elliot showed signs of "developmental delays" during his first few months.

The first-time mum shared in a chat with AsiaOne: "We knew that he's probably behind others his age but we just thought that different children would develop at a different pace."

'We were lost and shocked'

Back then, Covid-19 was at its peak so country-wide restrictions and preventive measures kept social interactions to a minimum.

This actually played a role in delaying Elliot's diagnosis as his parents did not get a lot of opportunities for him to "meet people".

Once Covid-19 measures were lifted, a visit to a friend's house helped Wei Shi notice how "behind" Elliot was in his development.

The contrast when Elliot was sat alongside another baby of the same age was stark.

Her son was neither flipping (rolling over) nor lifting his head, so this prompted a visit to the paediatrician.

After getting a referral to an ophthalmologist, an eye care specialist, the couple's worst fears were realised.

While they suspected that their son might be going through "some developmental delays", they did not expect to learn that he was blind and unlikely to ever gain sight.

"We were both lost and shocked," she recalled.

Wei Shi acknowledged that, due to his visual impairment, Elliot's life experiences were bound to differ significantly from her own and her husband's.

She also wondered if her son's condition might limit his ability to experience everyday activities, whether it was a trip to the playground, socialising with friends or even going to school.

She said: "I remember us looking at him sleeping and then just crying because we could not understand why this was happening to him."

Growing up blind 

Reality sank in for Wei Shi and her husband when a doctor suggested they read a developmental guide for parents of babies with severely impaired sight, Show Me What My Friends Can See.

Upon reading the book, Wei Shi understood that the next step was not about attempting to correct Elliot's sight.

Instead, they had to focus on how to best raise him as someone who cannot see.

Four years on and Wei Shi's description of her parenting journey is short and simple: Fulfilling.

"Every day I'm learning and it has taught me to be a more empathetic and compassionate person," she said.

It's a journey Wei Shi has shared with her husband, Eric, and along the way, the couple discovered their strengths in parenting.

She's often guiding Elliot with his schoolwork, while Eric would be on hand to plan and prepare for a family day out.

They focus on playing to their strengths while supporting each other when needed.

"If I do need his help, I will just have to voice out and he will come," Wei Shi explained.

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When asked about her son's personality, Wei Shi broke into a smile and mentioned how outgoing and chatty Elliot is.

His sense of humour has a tendency to amuse his peers and adults alike.

Wei Shi is aware, however, that Elliot may not always have such a positive impact on everyone he meets.

In fact, his lack of sight will likely lead to him having to deal with prejudice and discrimination as he grows up.

For now, people are generally understanding when they find out that Elliot is blind, Wei Shi said.

It's a situation she has experienced numerous times when out and about with her son.

A stranger's immediate reaction tends to be one of shock.

"Then you can see sadness [on their faces]," Wei Shi reflected, before saying: "I don't actually know if it is sadness or compassion. They probably just pity him."

How does it make her feel? We ask.

She admitted that, initially, dealing with such situations was tough and was a reminder that her son was seen as different.

Eventually, Wei Shi got used to such interactions and understood that people may not be behaving or reacting this way on purpose.

Nowadays, she views these situations as opportunities to raise awareness that blindness need not be looked down on or perceived as a disadvantage.

"Instead of letting my emotions take over, I will take the chance to advocate for him and explain to [people] that he's okay. It's a chance for people to learn," she said.

Through such exchanges, Wei Shi hopes that it creates an effect where more people will begin to have a more positive outlook on blind individuals.

Building an online community

Creating a social media account to document the life of her young child was not something Wei Shi thought she would do but Elliot's diagnosis shifted her perspective.

She struggled to find information on raising blind children in Singapore and had to reach out to resources overseas instead.

"I started to chat with some of them and they were really supportive. It was a nice community that was very open to sharing," Wei Shi recalled.

Learning about how well these blind children were doing was inspiring, and it gave Wei Shi hope that Elliot's development would progress in due time.

That's when she decided to be a beacon of hope to others in Singapore, by starting the social media account Blindandshine, where she documents Elliot's life journey.

"If a baby gets diagnosed with the same condition, [the] parents can have somebody to reach out to. That was the initial intention [of the account]," she said.

As of the time of writing, Blindandshine has more than 7,500 followers on Instagram and over 6,000 followers on TikTok.

Scrolling through both accounts, one would find content documenting Elliot's daily life — from his Brazilian jiu-jitsu classes to family outings.

Unsurprisingly, curiosity about her son's condition has prompted questions from people online, but Wei Shi has no qualms engaging with them in order to address common misconceptions on blindness.

"I think people come from a place of sympathy, and they just mean well for the child and family," she said.

Generally, their social media content has been positively received by viewers, and what's most heartening is the response by some.

Whether it's a parent showing their video to their child, or an educator sharing it with a class, Wei Shi is thankful for the conscious effort in raising awareness on the cause.

"I think that means my message is not just reaching a particular group of people, the people have become advocates themselves," she added.

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amierul@asiaone.com