When you focus less on yourself and your own problems, you will come to realise that people often feel lonely, even when they aren’t in lockdown – especially households with family members that have special needs. That is when the lyrics of the heartfelt song, LONELY TOGETHER, written by Ziya (a.k.a. Jana Viljoen), take on new meaning and you realise that many families and individuals living with special needs, face a constant state of lockdown: “To you, it is the new normal, to me it’s just another day.”
As lockdown restrictions are slowly being relaxed both locally and abroad, people are grappling with the concept of ‘the new normal’. A heartfelt new song by South African artist Ziya shines the spotlight on this but from the perspective of the families of children with special needs. Have you ever thought about how lonely life is for these families? Have you ever thought about the fact that lockdown is nothing “new” to them?
Ziya, a South African musician, composer, songwriter and co-founder of the Brain Child Fund, currently lives in Philadelphia in the USA, with her husband – Hannes – and their four children. The idea for the track was inspired by a conversation she had with a mother in the Brain Child Fund network. “I asked how they were doing during the lockdown. Her response was that if this was lockdown, they were permanently in it. Their son has compromised immunity, which essentially means that they cannot go anywhere as he is very fragile,” explains the musician, who herself has four children, three of whom have special needs.
“The song focuses on how people often feel lonely, even when they aren’t in lockdown. It is about how we are all essentially the same,” says the singer-songwriter. “During the lockdown, we were all in the same situation – we were lonely together. The forced lockdown highlighted our need for connection and our desire to love and be loved.”
“The essence of the song is that while COVID-19 created a ‘new normal’, one where people felt trapped and isolated, that is often the reality for special needs individuals who feel trapped in their bodies. To them, it’s just another day. These incredible souls, these amazing people with thoughts and dreams, feel as trapped in their own bodies as we felt during the lockdown.”
LONELY TOGETHER forms part of a project called Voice of the Speechless (VOS), which marries the singer’s passion for music with her heart for the special needs community. VOS is an initiative of the Brain Child Fund, a non-profit organisation serving special needs families through education, support, and by raising awareness. It was co-founded by Ziya in 2009.
“VOS is ultimately a social awareness project that uses edutainment to raise awareness and to destigmatise nonverbal special needs individuals using music and videos,” explains Ziya. The project is truly pioneering – it records special needs children’s sounds and environments, documents parts of their journey, and captures their stories in songs and music videos. The aim is to offer people a glimpse into the worlds of nonverbal special needs children from various backgrounds and countries.
Ziya’s original plan for the video was to travel to South Africa and to visit different special needs families with a team to do sound and video recordings at their homes – a day in the life concept. However, COVID-19 turned that plan on its head. “I decided to put the project on hold. That was until I spoke to that mother and the lyrics just started coming at me. I realised that the timing was inspired – now is the perfect time to share this story,” she says.
“After brainstorming, I realised that most people have smartphones and that there is no better way to experience someone’s daily life and the world than through home videos. I reached out to some special needs families, providing those who were interested in participating with guidelines of what we needed. They did the recordings themselves and sent it to us.”
LONELY TOGETHER features 18 families, including her own, from South Africa, America and Nigeria. “The process of writing, producing and performing this song has been an incredible journey,” says Ziya. The families who participated in the project agree.
“We hope this project gives people a depth of insight into the daily lives of people with special needs. Our lockdown did not start with COVID-19, it is a lifestyle we happen to be used to,” says Christy and Shawn from Nigeria, whose son has developmental challenges.
American couple Joe and Dawn Gallagher and their family also participated. “We are the proud parents of Joe, who was diagnosed with Autism Spectrum Disorder at age two. Today he is a happy, loving, and gentle 27-year-old. The happiness he has for his life and the love he shows us every day is the purest we have ever seen. We strive each day to be a little more like Joe and see the world through his eyes. Joe is nonverbal and uses a device and many different vocalisations to express his needs and emotions. Our family is so excited to be a part of this project because we know that love needs no words.”
Ziya and Hannes Viljoen have four incredible and unique children. Kyna (15) survived a paediatric stroke, Gian (14) has Down Syndrome and Autism, and Leo (12) is on the Autism spectrum. Abigale (11), says her mom, is her siblings’ cheerleader. “Our children’s diagnoses do not define them, and we are privileged to be their parents.”
Ziya admits that before becoming a mother to a child with special needs herself, she was totally uninformed. “In fact, I was clueless. I didn’t know what to do or how to act around people with special needs as I didn’t have anyone to educate me and destigmatise special needs for me. I realise that there are many people who feel this way, and those are the people I want to reach through VOS.
As three of my children have special needs, I am forever thinking of ways to make the world a better place for them and others like them. Most people won’t read an article about something unless they are personally affected by it. However, people will listen to a song or watch a video – narrative and art create experiences that encourage a mind shift, making it a very effective way to educate people.”
The next step, says Ziya, is to complete the album – with the help and collaboration of artists and special needs individuals/families from around the world – then weaving it together into a documentary.
“My hope is that by sharing a glimpse of what some families endure every day, VOS will enable people to identify with the special needs community differently. Essentially there is no such thing as us and them. There is only us.”
Become a voice for the voiceless by downloading LONELY TOGETHER – HERE…
Watch LONELY TOGETHER here: