Changemakers: Unlocking technology for people with motor neurone disease

It took a neck brace, internet strangers and being bored at work, but Julius Sweetland changed thousands of lives. The 35-year-old’s software OptiKey lets people with motor neurone disease use computers and have conversations using only their eyes. It’s free, forever.

After graduating from the University of Bristol in 2005 with a degree in computer science, Sweetland forged a career in software development mostly in finance, with names like Goldman Sachs and CME Group. It is not, the Londoner admits, the most feelgood of industries, and he always wanted to write some code that would make a difference.

When his aunt Gill was diagnosed with motor neurone disease in 2010, he witnessed how the illness attacks the body’s neurons. Around one in 50,000 people will develop it each year, with more than 5,000 Brits affected at any one time. It weakens and wastes a person’s muscles, causing loss of movement plus difficulty breathing, eating and communicating. As it progresses, some patients are left unable to move anything but their eyes (known as locked-in syndrome).

There’s something that can be done here.

“When you get to that point, your only solutions are people holding up boards or signs, or eye-tracking solutions,” the OptiKey founder says. “I saw an episode of Scrubs, where they help a patient talk using a laptop with a webcam on top. I thought that was really cool, especially when I learned through my aunt just how expensive eye-tracking equipment can be. But that made me think, alright. There’s something that can be done here.” Gill died a year after her diagnosis.

Left with a “nagging feeling” that this was the challenge he’d been craving, Sweetland looked into the systems already available. He found an industry monopolised by a handful of companies, offering products that were basic in function and astronomically expensive if a person didn’t have a healthcare system to fall back on.

“Put yourself in the shoes of someone who’s been diagnosed,” he says. “You’ve lost your ability to talk and move, and someone says their system will track your eyes to let you talk to your family. And it’ll be £15,000. It’s a bit of a kick in the teeth.”

He was determined that he could do better, and that he could offer something for free. It would be an open source project, he decided, which means the code he had written to create the software is available for anyone to copy, edit and improve if they had an idea. It took until 2015 for Sweetland – father to a four-month-old at the time and still working his day job full-time – to settle on a prototype he was happy with. Part of the process involved him in a neck brace and with a stick taped along his spine in a rudimentary attempt to recreate the effects of motor neurone disease. This, he says, was not his best idea.

But eventually, it was done. Sweetland had developed an on-screen keyboard that could be controlled with a mouse or with head movement, but predominantly with just a person’s eyes. The software displays a keyboard on the screen and, using any available eye tracker (usually around £100-£150, he says, “the only money you’ll spend”) reacts to where you look, allowing you to browse the internet or write words and phrases to speak to those around you.

OptiKey is not only cheaper than the alternatives, but gives users more freedom. Most try to assume what users are going to want, as the founder explains, so they come up with built-in support for the likes of Twitter and Spotify. But there is nothing in place for those who want to use a computer for something outside of what a company has decided they’ll want to do. “My software works the other way,” Sweetland says. “It says: I am your mouse and keyboard, your computer’s your computer, do whatever you want.”

Sweetland launched his product when he was bored in a meeting at work. He posted it on Reddit, the internet’s biggest forum site. A couple of hours later, he was on a bus home from work when his phone started buzzing. Upwards of 30,000 people had signal-boosted the project, making it the second most popular post on the site at the time. That was just the start.

In the nearly four years since, Sweetland has updated the software 186 times. He has also encouraged collaboration on the project – being an open source product it means people can add features and, crucially, help translate the software into other languages. OptiKey has an estimated 2,000 users at any one time, but Sweetland happily reports that the UK hasn’t been his most successful market because the NHS is quick to help people with equipment where they can. Instead, OptiKey took off in the US, Brazil and Turkey.

UK charity SpecialEffect built on Sweetland’s code to let disabled children play Minecraft using just their eyes. Meanwhile the product was featured in the keynote speech at last month’s online Microsoft Connect conference. A recent addition to the product, courtesy of someone code-savvy and anonymous online, lets users connect OptiKey to their smart home features so they can control the lights and heating in their home. For the moment, the software is available in 21 languages.

He may be changing lives and saving money around the globe, but Sweetland still works full-time in finance and is now a father of two.

Read more about The Big Issue’s Changemakers here