Meet Sarah
Sarah Ezekiel is an internationally recognised eye gaze artist and advocate for people living with Motor Neurone Disease (MND). Diagnosed in 2000 while pregnant with her second child, Sarah’s condition progressed quickly, leaving her unable to use her hands and without access to communication tools. It wasn’t until 2005 that assistive technology reconnected her to her world and changed the course of her life. In 2012, Sarah began painting with her eyes using art software and eye gaze technology. Over the years, she’s exhibited her work across the UK and internationally. In 2023, Sarah’s art went beyond digital art when she directed and co-created Ms MaNDy’s Adventures in Wonderland – a multimedia drag theatre show inspired by her experiences of living with MND. Collaborating with Cheddar Gorgeous and a team of leading drag performers, the show uses storytelling, AI visuals, music, and humour to challenge perceptions of disability, identity, and expression. We recently visited Sarah to film her story and hear more about how her Grid Pad, eye gaze, and AI-powered voice technology are supporting her creative work and communication. You can watch the full video here: I was diagnosed with MND in April 2000 whilst pregnant with my second child. After my son, Eric, was born, my symptoms progressed rapidly and soon I was unable to use my hands. My marriage collapsed and I needed care for myself and my children. I lived in an offline wilderness until I got my first assistive technology computer in 2005. That’s when my life started again. I started using eye gaze technology in 2010 and began creating art in 2012 using art software. I’d studied art and history of art, and not being able to create after diagnosis was really hard for me. Eye gaze changed that. It was initially slow and challenging, but I was just grateful to be creative again. Here are some examples below of the digital art I have created using eye gaze technology. In 2019, I met Professor Andrew Irving and his partner Melissa, and shared some memoir writing I’d done. That led to the idea of telling my story in a creative way. I met Cheddar Gorgeous in 2023 through Andrew and started exploring drag as a form of expression. Cheddar and a group of brilliant drag queens helped bring it all together. The show explores my experiences of MND through dream-like sequences, monologues, music, and visuals. It’s a creative retelling of my life and struggles, but it’s also full of joy and humour. I used AI art to help design costumes, and my Grid Pad to help direct. We’ve had two shows so far and the feedback has been amazing. Losing my speech was the most difficult part of living with MND. I felt like I had lost my identity. With just a single line of speech from an old video, ElevenLabs were able to recreate my voice using AI. I love having my voice back, I almost cried when I first heard it. My kids couldn’t remember what my voice used to sound like, but now they can hear the real me again. From my experience of living with this disease for 25 years, I always tell people with MND that with good technology and support, anything and everything is possible. The producer of the show has received a grant from the Wellcome Trust for five years. I’ll be working as Participant Lead, helping explore how technology can support the creative lives of people with MND. We start next month, and I’m really excited about what’s to come.
Sarah’s new voice was created using ElevenLabs, an AI voice platform that enables people to generate authentic voices that sound like them. ElevenLabs voices are available for free for all Grid users over the age of 18. Follow the steps below to get your voice: Additionally, we can provide a free ElevenLabs voice for AAC professionals to demo with a 12-month Pro License, helping more clinicians test and demonstrate the quality of AI generated voices.
Sarah’s story, in her own words
Can you tell us a bit about yourself and your experience with MND?
How did you first start creating art with eye gaze?
Can you tell us more about Ms MaNDy’s Adventures in Wonderland? What inspired the creation?
How has voice loss affected you, and how did ElevenLabs help?
What advice would you give to someone with MND who is just starting to explore AAC or eye gaze?
What are you looking forward to next?
How to get an ElevenLabs voice