The girl who kicked the door open
Sarah Holten-Warren is under attack from the degenerative neurological condition Rett syndrome and is fighting back using her eyes and her art to communicate.
Sarah, 27, a Māori mixed-media artist, was one of five artists in the Studio One Toi Tū Creative Studio Residency last year.
Her exhibition ‘Making My Mark’, in October, is believed to be the first eye-gaze art exhibition to take place in Auckland.
The impact of her neurological condition means Sarah cannot speak or use her hands for everyday functions. Instead, she uses a head pointer on an adaptive headpiece to create her large-scale, expressive artworks.
Sarah uses a speech-generating device called a Tobii, which works by tracking her eyes. Her point of vision becomes a cursor or ‘dwell’ on the screen, which selects the language or pictures she wants to use. The Tobii device then speaks them out through voice generation.
Sarah’s Mum Lisa Holten thinks back to how she watched her small daughter, who had learned to walk at nine months, to push a chair up to the bench at every opportunity and was expert in doing three-point turns on her bike, begin to change. She began to lose her language and struggled to hold a spoon. She developed gastric problems and obsessive hand movements.
When Sarah was aged two she started to bite her thumbs repeatedly, and when Lisa sought medical help Rett syndrome was diagnosed. Sarah lost a lot of her fine motor skills by the age of four but was able to walk and run until she was 10 or 11 years old.
As Sarah’s condition progressed Lisa remained convinced that her daughter was still reachable. “It was the eyes; the understanding was there,” she says. “There is so much behind them, there is so much expression.” She says for people with Rett syndrome the eyes remain the easiest part of the body to use. “There is a direct neural pathway to the brain.”
Lisa says she struggled to have Sarah properly assessed. “They thought she couldn’t comprehend.” But Lisa believed new eye-gaze technology was a medical necessity for Sarah and convinced the health assessment service to let her try it. “I pleaded with them to give her a trial and they gave me two weeks.” Lisa shot a lot of video in that fortnight and it convinced them. “They could see that she was having purposeful conversations and it really opened their eyes,” Lisa says.
Sarah started trialling a Tobii device in 2013 and she was funded for her own device in 2014. “She was the first Rett girl in New Zealand to be funded for a Tobii device. Now there are heaps of girls who have followed through with that device. Sarah kicked the door open,” Lisa says.
Finally, Sarah got her voice. Lisa discovered that her daughter had a sense of humour and could – and did – have her on. “She does have a lot to say.” Lisa says the affirmation that Sarah could understand was a huge breakthrough. “It was concrete proof that I wasn’t a ‘hopeful mother’. She could say how she felt, if she was hungry or tired, or in pain, or where she wanted to go, or who she wanted to see. Now the locus of communication is under her control.”
Right: Sarah Holten-Warren reconnected with her world through technology and is making plans to develop a business based on her art.