Kaboutjie SA Mommy Blogs by Lynne Huysamen
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 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 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 lockdown.”
Watch LONELY TOGETHER here: https://youtu.be/64xwEiSEE9M
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.
LONELY TOGETHER is the first track in a series the artist is creating as part of a visual album – a concept where a video accompanies each song – in collaboration with families and other artists around the world. The culmination of the project will be the creation of a short documentary.
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 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.”
Valencia Viviers and her son Jayden are from South Africa and also feature in the video. “We really enjoyed being part of the project because with Jayden I have learned so much about silence and that silence, in fact, also has a meaning. Without words, I understand my son, and VOS is making it possible for the world to also understand the lives of special needs children and their families.”
While the song/video was composed and produced by Ziya, she was supported by visual director, video editor and co-producer Nick Costaras and co-producer Chris Letcher.
“I hope that the raw emotion and beauty of the video will touch people, and that it will bring about a shift in their hearts and minds. I want people to see and experience the beauty of special needs individuals first-hand,” says Ziya.
Families of special needs children, who would like to contribute video or sound clips towards this project, can visit https://www.facebook.com/vosmovement/ or send an e-mail to info@voiceofthespeechless.org to find out what the requirements are.
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 first glimpse of VOS came about in 2010, says Ziya. “I was busy with therapy in the basement of an angel who housed us for a year after my husband and I sold everything to do therapy with our children. Her name is Rosemarie. While we were crawling as part of our program, Gian stopped and looked at me. I could sense that he urgently wanted to share something with me, but Gian is nonverbal. The thought struck me – ‘I wish I could weave the noises you make into a sound tapestry and write lyrics to tell the world how wonderful you are. I wish I could be your voice’.”
Eight years and countless challenges later, she composed a lullaby that would become the catalyst for VOS. “In 2018 I challenged myself to compose 100 songs or parts of songs in just over 100 days. I posted these songs on Facebook or performed them live. The lullaby I wrote was inspired by the many parents who often battle through the night for their children’s lives. I posted it and went to bed. The following morning there was a message from a mother thanking me, saying ‘Your song carried me through the night’. I cried for three days and remembered that day in Rosemarie’s basement. It was a defining moment – I realised that after working with the families in the Brain Child Fund it was no longer just about Gian. There are many more like him who needs a voice.”
Ziya has always loved music. “I was composing, singing, playing piano and performing in our living room from the age of five,” she confesses. She pursued music as career from the age of 20 but describes herself as “too much of a rebel to sign with a specific label”.
Both her albums, she says, pushes the envelope and is far from mainstream. “I have always wanted to make music on my own terms. It is important to me to stay true to myself and the season I find myself in. I am incredibly grateful to the young artists who owned Lighthouse Music back in the day. They recognised my talent and encouraged me to challenge myself and push beyond my limits and fears.”
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: http://itunes.apple.com/album/id1518381692?ls=1&app=itunes
Watch a touching short concept video about VOS here: https://youtu.be/W7KFzRA_Fxc
Let’s be the voice of the speechless. You can add your voice by contributing to the creation of more songs and videos like this. To support the VOS cause, visit https://www.facebook.com/vosmovement/ for more information about donations or becoming involved.
SOCIAL MEDIA LINKS
Facebook: https://www.facebook.com/vosmovement/
Instagram: @vos_movement
YouTube: https://www.youtube.com/channel/UClFBPJa3tIhl1p6-TfIPJFw?view_as=subscriber
Website: http://voiceofthespeechless.org/
