Graham is 57 years old and two years ago suffered a stroke so bad he woke up paralysed. Graham is living with Locked-In Syndrome, which means even though he is totally aware he is unable to move or speak. He has some very limited movement in his left hand and head but can only get the energy to express this for short times each day. When we met him, the only way he could communicate was by painstakingly tapping letters and words out with a stylus on an iPad. This process was slow and would tire him out to the point of total exhaustion. The first time I met him I talked to him for two hours and he couldn’t communicate again for two days.
His situation is unbearable to even imagine. Every time he was in pain, he couldn't tell anyone. Every time he wanted to agree with someone, he couldn't. Every time he wants to laugh he couldn’t. Every time he wanted to acknowledge that he’d understood someone, he couldn’t. People would treat Graham as though he couldn't hear him when he could. They would talk over him and ask Zoe, his wife questions instead of him or try and predict what he was going to say before he’d finished tapping it out on his iPad.
He said he was so frustrated all he wanted to do was get up and scream.
Over the course of several months, we spent many days with Graham and his wife Zoe. Without the usual constraints of time, we were able to have long conversations with Zoe about their situation. I liked them both. The love between them was infectious, she would tease him and he would often use his very small amount of energy to tease her back with cutting words on his iPad. It was their obvious infection for one another that made the tragedy of their lives all the more great. Early on in our meetings, Zoe begged me to go home and film my loved ones. She painfully tried to explain the anguish one feels to never hear your husband’s voice ever again. She said she’d give anything in the world to hear him one more time.
It was crucially important that we understood what it felt like to be Graham. Obviously the challenge was, we couldn’t talk to Graham like we would anyone else. He could write things using his iPad but he only had a certain amount of energy per day in which to do that before the exhaustion become too much and he’d have to stop, and retreat back into the prison of his body. Using a series of statements, the team and I created a priority board so that we could allow Graham to prioritise the design criteria. Statements such as “I want my communication to be as fast as possible” or “I want to be able to express how I am feeling in the moment” or “I want to be able to express detailed sentences that are exact to what I am thinking”. Using these and then asking a few targeted questions, we were able to start constructing a design brief.
We then spent time, not speaking but letting people speak around us, to start noting what we felt the urge to do. Interestingly it was the unremarkable things that seemed most powerful. Yes we needed the ability to get someone’s attention so that they would look at you and work with you to understand what you wanted to communicate but when you break down an interaction with someone to it’s bare minimum, you realise that timing is actually everything. A lot can be said if you can react to something someone else does at the exact time they do it because then it becomes a dance between you and them. Offering encouragement to them when they need it so they keep going. Inviting them to pause. Showing that you enjoy what they are saying.
The team and I came up with the concept of, what we called, the ‘Reaction Pad’. An iPad app that would give Graham some of the things he’d lost. Timing. Presence in the room. Connection with what was going on around him. We took the skeleton of this idea to Graham. Using the simplest tools around - pen and paper and (my personal favourite) posit-it notes. We allowed Graham to sculpt and curate the functionality so that the design was as tailored as it possibly could be.
Knowing that he struggled with energy levels, he needed to find ways to give him control over the reaction pad on bad days, as well as good. Our meetings with him included crude prototype after crude prototype to discover the easiest, least energy hungry control to give him power in the app.
We eventually designed a range of bluetooth controllers that included a waterproof lightweight ‘D-Pad’ and a joystick style control with Ross making countless prototypes to achieve something that would work the way Graham specifically needed.
Then came the question of how these decisions to communicate would be received by other humans. Graham has rejected the idea of a ‘robot’ or ‘Stephen Hawking’ voice right from the moment he became paralysed. If he had no voice he certainly didn’t want a cold, humanless voice saying what he was thinking. We looked to technology to help us out. There are some extraordinary advances in synthetic voices and many examples of other communicational devices that use recordings of actors to use as a library for speaking. But if Graham cannot use his own voice, why would use someone else’s suffice unless...unless that person was adding something else to the equation.
In this moment we used Graham's very specific needs to up the creativity. Inspired by the Transformers movie, in which a robot alien from another planet jumps between radio stations to create sentences...we sourced over 300 clips from TV and film to make a library of phrases and emotional reactions. Everything from The Thick of It’s Malcolm Tucker’s excellent range of swearing to James Stewart yelling ‘yippee’ as he runs down the street in ‘It’s a Wonderful Life’. Graham was delighted with this alternative to a synthetic voice.
As a twist in fate that seemed so impossible it can only be real. Just as we were coming to the end of the project. Zoe discovered an old box in the attic when builders were preparing their house for Graham's return home from two years in hospital. There, hidden amongst the recordings of footballs matches was invaluable footage of Graham’s voice as he filmed dozens of home videos. As a wonderful little evolution of the Reaction Pad, we were able to cut approximately sixty key phrases from Graham's own recordings to populate the content of the app meaning when we gave it to him, he was able to respond to Zoe with his own voice for the first time in over two years of silence.
Getting to know Graham so well and spending so much time with him, created a connection between us that went further than the traditional designer/user relationship. This behaviour is a lot closer to that of a friend or family member. I feel we were better able to empathise because of this and therefore better able to create a more meaningful solution.
To watch the mirco doc please here.
If you know someone who needs a communication aid, or would like to donate money so that more people like Graham are able to get their voices back get in touch with Communication Matters.