Triumphing over disability

The one guarantee about parenting is that it will be full of surprises. No parent escapes the ups and downs of one of the most important relationships of our lives. So, says Lindelwe Magwebu, a dedicated blind mom coping with the challenges of raising her blind daughter, Blommie, “The minute you’re pregnant, you imagine your child’s future. And if you hear they have a disability you must still have dreams for them. You should research places that can still take them to the next level.”

Anna Semelela has raised two deaf children, Prince (23) and Neliswa (21). Communication for them has been through Sign Language, which Anna had to learn. This is her greatest piece of advice to parents of deaf children: to obtain the means to “speak” as early as possible, as she did over two years.

While six-year-old Blommie, Lindelwe reveals, is a competitive go-getter who “speaks her mind”, Tanya Eglinton’s son Dean cannot always communicate what he wants or needs. Her five-year-old son who has cerebral palsy, cannot walk and is mostly non-verbal. “He can’t tell me, ‘Mommy, I need this’ or ‘I am sick’,” explains Tanya. His lack of mobility is also challenging, bearing in mind that he is growing, getting heavier and Tanya is carrying him from room to room. Neliswa, however, has fully embraced life, even acting in a Shakespeare play performed entirely in Sign Language.

Some of the biggest challenges parents of disabled children face is how others react to them. “As harsh as it sounds,” Tanya says, “the public just don’t understand. A lot of people look at us funny when we park in the disabled parking even though we have a sticker, which indicates we have a disabled child.” Lindelwe agrees. She explains how people judge her for being blind and having a child of her own. As she puts it, people think that she is already a burden, “a problem making another problem.” It is extremely hurtful. Says Tanya, “We also have challenges with new doctors and public spaces, if there are too many people we’d rather not go and that is including family gatherings.” Interestingly, deaf people face fewer challenges in this regard, but Anna does explain that Prince didn’t want to wear a hearing aid as he felt people were staring at him.

Another concern for Lindelwe is accessing the simple things that benefit Blommie’s development. It isn’t quite as easy to go to the beach or the park or have the experience of riding on a train. She explains that Blommie sometimes wishes she had sighted parents, like some of the other kids at school. “We don’t hide why we can’t see,” she says. “But the neighbouring sighted kids understand Blommie is blind and know to help her by holding her hand.” Anna comments on her own children, “My challenge was when they reached dating age. I was overprotective. I had to realise that they are just normal children who can’t hear. I taught them what was wrong or right and to respect their bodies.”

Both Lindelwe and Tanya experience their children’s frustration at times with their disability. Resilience, however, is key to successful adaptation. Tanya says she encourages Dean to be positive, be himself, push himself every day in his therapy. She also remains hopeful that he will walk one day. Lindelwe, however, draws on her faith to build her family. “Everything we do is based on God. God made Blommie, a blind child. There is a reason for her to live. Having Blommie inspired me to be a better parent.” And while Prince is shy, Neliswa is proud and stands up for herself despite her disability.

When asked what these moms have learnt on their journey, Tanya responds, “To be patient and never be afraid to ask for help (I still struggle with that).” Anna, however, understands that her kids want to be treated like every other kid. They want to make their own decisions. Lindelwe adds, “I learnt that I have to be the example. I have to get up and do things. Change doesn’t come to you; you have to work for it.”

All the moms are proud of their kids. Says Tanya, “Dean is my sunshine, my everything. When he smiles and gives me kisses, I am happy. Every time he achieves something, even if it’s small like learning a new word or eating something new I am proud.”  Anna comments on Prince’s job in a ten-pin bowling alley, where he is able to speak and be understood, despite his deafness. Neliswa, currently at the De La Bat School, aspires to be a chef. Lindelwe admires Blommie’s free and independent spirit.

Tanya mentions the one thing she wishes she’d been told and which she wants to share with other parents who have challenges: “You are not alone. We are all out there and just need to find each other.” Says Lindelwe, “Why should we limit our children? I’m trying to make Blommie brave. The sky’s the limit.”