This story originally aired on December 9, 2014.
Henry Evans and his wife Jane live high up in the Los Altos foothills. To get there you have to drive up twisting roads with steep switchback turns. On a Thursday morning 12 years ago Henry drove up these same roads after dropping his children off at school.
“Life was more what you want to call normal,” says Jane Evans. “We had a very busy life raising four kids, my husband was a CFO for a startup company. We were very involved in our children’s activities whether it was boy scouts or hikes, bicycle rides, coaching them in sports.”
Then, Henry suffered from what is called a brain stem dissection.
“It's a very rare type of stroke, but it left him completely paralyzed and mute. As Henry described to me, he woke up and felt like he was cemented in his body, literally cemented,” Jane remembers.
That stroke left him trapped, unable to lift a finger at first, or say a word. But now, with help from technology, Henry feels free.
On the day I visit, Henry meets me in the driveway using a robot called the Beam.
The Beam is basically a big computer monitor with a webcam attached to a small base by two poles. It’s about 5 foot 5 and pretty rugged as it rolls over the concrete driveway.
Henry controls the Beam from a computer in his bedroom. He has an eye tracker on his glasses that acts as a cursor, and he has just enough movement in one of his hands to click a mouse. A message on the screen reads, “Follow me!” So, I do.
Jane opens the door for us, and shoos their dog Amber away. She leads us down a narrow hallway, past family photos and a shelf of homemade wine. The Beam rolls behind us until we reach their bedroom. Henry’s sitting up in bed, grinning; a lot has changed since Henry’s stroke.
“My day starts with my caregiver, which his often my wife, emptying my catheter bag, brushing my teeth, feeding me breakfast and giving me a shower,” says Henry, talking to me with a text-to-voice program on his computer.
“If the weather is good they take me outside for some sun. In the evening they return me to bed and hook up my computer until I go to sleep.”
He types his responses using his head tracker, slowly moving his head up and down, side to side, sliding the cursor over a digital keyboard.
A new form of communication
Henry and his family had to find a new way to communicate, and this is one of them. But right after his stroke, he couldn’t move his head or his eyes, so at first they talked using blinks.
“One blink was yes, two blinks were no, and little by little we would divide the alphabet. I would go through each letter slowly, and then write down the letter that he blinked at. So, you can imagine how long it took to say one sentence,” Jane describes.
Still, they talked about everything.
“He rated the nurses in the hospital, who was the top choice, the second choice, third choice, and why somebody was at the bottom of the list,” she says.
When Henry gained more movement in his eyes and head, they began to use a letter board - a clear plastic square with letters grouped together in threes and fours.
“I had ‘ABC’ on the upper left hand corner, ‘DEF’ in the middle, ‘GHI’ on the upper right hand corner. I could see where his eyes were looking, so if he was looking at ‘ABC’, you can guess the letter ‘A’ and he'll shake his head no if you’re wrong, but also if he has his lips closed I knew he wanted a ‘B’, ‘M’ or ‘P’,” Jane says.
This is still the primary way that Henry and Jane communicate in person. They’ve become so good at it, Jane doesn’t even need a board anymore. She can just picture the letters, floating in mid air.
Watching them work together is amazing. It’s like an ultra-fast game of Jeopardy, or Hangman. But not everyone can use the virtual board, and that’s where technology comes in. Henry uses his text-to-voice machine to talk to friends. He types dozens of emails and Facebook posts daily with his head tracker.
“The best part of the day is getting on the computer because in cyberspace everyone is on equal terms,” Henry tells me.
This is the motivation for Henry’s work - to help people with disabilities become more independent, more equal. And the robots and machines he’s developed, invented, and tested are simple.
Robots as a form of independence
Henry’s worked on everything from a laser pointer head switch that can turn the lights on and off, to a bed that he can move up and down, to drones that he can fly around his backyard, inspecting his solar panels or the grapes he and his wife are growing behind the house.
“The first time I flew a drone outside I felt a combination of amazement, freedom, independence and enjoyment ... and then I crashed,” Henry says.
Henry also has a pretty good sense of humor. Sometimes he chases his dog Amber around the house with the Beam. One night he and his nephew stayed up until 2 a.m. programming his bed to dance to a Justin Timberlake and Jay-Z song.
Whether he is brainstorming something fun or something that he really needs, Henry has a specific way of innovating.
“I rapidly generate many ideas and then ruthlessly throw most of them out. I then send out multiple emails bouncing my ideas off of people, mostly strangers. I pursue the ideas to see if they resonate with people,” Henry says.
Robots as body surrogates
He works on his ideas - called Robots for Humanity - with friends, family, professors and scientists around the country. The biggest collaboration was with a now-defunct robotics lab in Menlo Park called Willow Garage, the Healthcare Robotics Lab at Georgia Tech, and their robot called the PR2. “PR” stands for “personal robot.” Henry first saw it on CNN one day.
“And I immediately imagined using it as a body surrogate,” Henry says.
That means Henry could control the robot to do things he can’t. When Willow Garage disbanded, the PR2 moved in with Henry and Jane. It’ll be living with them for the next five years. During that time the Georgia Tech researchers will test how it can work with caregivers and help people with disabilities.
The PR2 looks like it could be from the movie Star Wars, or working on an assembly line putting together car parts. It’s white and silver, has a strong, muscular torso, and metal arms coated in a soft, grey, skin-like material. It’s about five feet tall, but can extend higher if you want. The two cameras on its short swiveling head look like big black eyes. It looks … friendly. Jane says Amber the dog sleeps next to the PR2, and I did feel like I was meeting another one of the Evans’ pets. When you shake its two-pronged hand, it’s moves just like a human’s.
In the Evans’ household, this robot has delivered Halloween candy to kids, taken pizza from a delivery guy, gotten beer from the fridge. The researchers are teaching the robot how to feed Henry yogurt. And Henry has used it to do something he hadn’t done since before his stroke.
“He's clicking on buttons, making the hand get closer and closer to his face, until it's about an inch in front of his nose,” remembers Steve Cousins, and founder of a new robotics company called Savioke, and one of the original creators of the PR2. “And then he reaches forward and scratches his itch on his nose, and everybody in the room let out this sigh of like, ‘Wow!’ he just scratched his nose for the first time in ten years. It was just an amazing thing.”
It might not seem like a big deal, but a little bit of autonomy can go a long way. Cousins’ work with the PR2 was originally just to see if the average person could use this machine in their home or workplace, but meeting Henry helped him realize how his work could meaningfully change people’s lives.
“If we do a top-down economic analysis of where we might be able to create robots that could help the economy, “disabled” is not going to pop up on that analysis. But Henry pushed and said ‘No, that’s what we need to do; this will be really valuable to me,’” Cousins says.
Robots for everyone
Now, in his spare time Cousins helps Henry operate his Robots for Humanity Blog, helping spread Henry’s ideas around the globe. The PR2 and other devices are too expensive for the average person right now. But Cousins tells me that the way research is going, it won’t be long until there will be multiple robots helping Henry, and other people with similar disabilities for many different tasks.
“I'm confident 20 years from now, Henry could definitely get a low cost robot arm that’s safe to be around, which means that he could have one or two arms mounted either to his wheelchair or to a table near his bed.
Cousins says we shouldn’t dismiss the technology just because we don’t think we’ll ever need it.
“As you get older, things start to break, and so the really cool thing about Robots for Humanity is it shows how even if you’re in the most extreme situation - you can’t talk, you can’t move - you still might be able to use a robot and influence the world, or as Henry's doing, go visit the world!”
I asked Cousins if he ever thought or worried about these types of robots taking peoples jobs, replacing the human caregiver, or reducing the importance of human-to-human interaction. His answer was an immediate ‘no.’ He thinks Robots for Humanity is the most compelling use for robots out there.
“It totally transforms somebody’s life. It has nothing to do with taking away jobs from somebody, it has to do with basically building somebody up and making them more effective, making them able to have a purpose in life. Having a robot lets Henry participate in life in a way that he simply couldn't without it.”
I asked Henry the same question, and he tells me that he thinks robots will never completely take the place of humans.
“When it comes to caregiving robots, will simply leverage human caregivers by performing unpleasant and repetitive tasks. Social and psychological issues will therefore be minimal, and the robot will just be another piece of equipment,” Henry says.
Albeit for Henry, it’s an extremely important one.
Robots as a way to visit the world
Even though Henry feels like he is trapped in his own body, with technology and his mind, he can go anywhere he wants -- into labs to talk to people who are helping him invent things, or to art galleries around the world.
“I am currently involved in numerous outgoing projects with researchers from almost a dozen universities. The one project I will talk about is the world tour of museums for quadriplegics that I am organizing,” Henry says. He’s already been in the de Young museum in San Francisco, The Hermitage Museum in Saint Petersburg, Russia, and the Computer History museum in Silicon Valley, among many others.
Jane Evans says this independence is priceless.
“It's so powerful. That freedom to go to places that you normally wouldn’t be able to go, or do something for yourself, there’s just no word to describe it. Not only mentally, but physically, what it does for you is just unbelievable, and I really truly believe that is why Henry is so healthy today. It’s because his mind is active. He's soaring. He's really soaring.”
The last question I ask Henry is what he would invent if he had the power to invent anything in the world? His answer? A brain machine interface.
“It would allow you to control electronic devices just by thinking about them. Such interfaces to do exist, but at present are not accurate enough to be useful,” he says.
Just as I am about to pack up my things and go, Henry starts to type one more thing on his computer. He presses play, and asks me if I want to go to Rhode Island right now.
At first, I’m confused by this question, but before I can ask, we’re off, moving around inside a robotics lab at Brown University, Henry leading the way.