Bianca Saez has a mission, and that is to spread positivity along with showing people the reality of what it is like to live with Tourette Syndrome.
Saez appears in the SBS documentary series What Does Australia Really Think About. This series reveals what Australia thinks about disability, obesity and old age through emotional personal stories, confronting social experiments and a nationwide survey. We get an insight of what it’s like for Saez to go on holiday, including staying in hotel rooms that don’t meet her needs and having to deal with holidaymakers unused to ticks that affect those with Tourette’s.
But what is day to day life like for Saez? Her everyday life is what she explores on her YouTube channel – B with Tourette’s.
While in the documentary Saez confronts the issues she faces, on her channel viewers can see what it is like for Saez to live with Tourette’s while she does tasks like cooking, shopping and going to the hairdressers.
“I’ve been making bread a lot,” Saez says when we chat. Her video on living with Tourette syndrome has gained over one million views. Part of the video shows her cooking.
"People will say ‘please don’t use knives,’ but for me having to use knives and cooking is part of my independence.”
“I love cooking. It gets messy but I love it especially when I’m home alone. I do get injured. I may get a cut from a knife but it’s not too bad. And people will say ‘please don’t use knives,’ but for me having to use knives and cooking is part of my independence.
“People say: ‘don’t do that with Tourette’s. You can’t do that with Tourette’s.’ But saying that to someone with Tourette’s makes them feel like sh*t," she says.
“And it’s important for people with Tourette’s to see me cooking. They may think right now I can’t cook but one day I may be able to cook.”
However, almost all the messages Saez receives on her channel have been overwhelmingly positive. “I get message requested from all sides of the world. People saying thank you for making me aware. People say how I help them get them out of bed in the morning.”
Saez says she received a message from a man with Tourette syndrome who didn’t even let his parents touch him for 10 years. But Saez's videos have helped him improve his life. “He’s even let his family cuddle him again. I can’t believe I was able to help him with that,” she says.
Increasing the visibility of what it’s like to live with Tourette’s, is one of Saez's mission with her channel.
Increasing the visibility as well as highlighting what it’s like to live with Tourette syndrome, is one of Saez's mission with her channel. She makes her videos with her partner Zack, who films and edits the clips. She credits him for making her videos look so good. “He’s a big part of my YouTube. Without Zack I won’t be able to do what I do.”
Bianca and Zack met three years ago, first at a friend’s place and then again at a reggae festival. “I was waiting for my friends to get there and they were running late. And then Zack walked in and I was like ‘hey Zack how are you?’ I asked if he wanted a beer and then from that day, three years later we have not left each other’s side.”
“Everyone calls him my calming rod,” she says. “People say it’s so good he looks after you. But actually, we look after each other just the same.”
Zack does step in when Saez needs help, for example helping her brush her teeth.
“Brushing my teeth… That’s what I’m struggling with at the moment. I’m unable to find a toothbrush that I can’t break. I will put the toothpaste in my eye or shoving the toothbrush down my neck. So my partner actually brushes my teeth for me at the moment.”
Saez has been living with Tourette syndrome pretty much her whole life.
Saez has been living with Tourette syndrome pretty much her whole life. “I was diagnosed at five years of age with Tourette syndrome. When I turned 12 my Tourette’s turned worse. I had violent rage attacks to the point where I couldn’t function at school. But it wasn’t until like three or four years ago till I actually started feeling like I could cope with sh*t in life. I met Zack. And I met my best friend who also works as my carer. So now I can finally say I’ve got true friends and I’m in love. I’ve waited so long for that. Waited so long to have people in my life who I genuinely want to be around and love hanging out with me rather than wanting to use me.”
Aside from her YouTube channel, Saez is also working as a motivational speaker through an employment training company.
“I speak mostly to people who are on the dole… I tell them a lot about my life and all the stuff I’ve had to overcome… If I could do it, so can you guys.”
“It’s good to be able to talk to people through the company because I’m able to talk about Tourette’s still. So it’s a win for me. I get to work, I get to earn my own money while helping people and motivating them to get jobs. All while also spreading Tourette’s awareness.”
It’s taken a long time but Saez is finally at a place where she feels content.
As she says: “I’m a very resilient person I never wanted to give up. To people struggling with Tourette’s. I know your life may sometimes feel like sh*t but it’s not going to be bad forever. Look at what I went through, but look where I am in life.”
Despite having a mixed experience on the holiday she was filmed on for the What Does Australia Really Think About, Saez holds up hope of travelling, especially overseas. “I haven’t been overseas yet,” she says. “It’s not a holiday until I can leave the country.”
What Does Australia Really Think About… premieres 8:30pm Wednesday, 18 August on SBS and SBS On Demand. The three-part series continues weekly. Episodes will be repeated at 10.15pm Mondays on SBS VICELAND from 23 August.
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