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:
Sarah's story in her own words
Can you tell us a bit about yourself and your experience with MND?
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.
How did you first start creating art with eye gaze?
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.
Can you tell us more about Ms MaNDy’s Adventures in Wonderland? What inspired the creation?
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.
How has voice loss affected you, and how did ElevenLabs help?
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.
What advice would you give to someone with MND who is just starting to explore AAC or eye gaze?
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.
What are you looking forward to next?
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.
Could Grid support your journey too?
Whether you’re just getting started or looking for new ways to support communication, we’re here to help you explore what’s possible. Grid is our flagship software used by children and adults with communication difficulties across the world, to have a voice and live more independently, available on Windows and iPad. Grid can be personalised to suit a wide range of needs – and with a free trial, there’s an opportunity to see if it’s the right fit.
Want to talk it through? Our friendly team is always happy to chat and help you find the best option for you or the person you support. Get in touch with us by calling (03) 9696 2944 or email us at [email protected].
Interested in voice banking or creating a voice with AI?
Sarah’s new voice was made using ElevenLabs, an AI voice platform that lets people generate realistic, personalised voices. If you’re over 18 and using Grid, you can create your own ElevenLabs voice for free.
Here’s how to get started:
- Create an account with ElevenLabs and apply for a code (using the link below).
- Create your voice using ElevenLabs.
- Input your ElevenLabs API key in Grid’s settings.
