I was friends with a man with ALS. He was our next-door neighbor, and his kids were our age. We were all friends. He became symptomatic in his mid-40s, and was soon confined to a wheelchair, and soon after could only move his head and one hand. We would go see him every Saturday, at the care facility where he now lived, and would take him out to the bar. Everyone always had a great time – friends, some beers, lots of laughs.
There was sometimes a problem, though – beside, of course, the hideous tragedy of the disease. At the original bar, there was a low table, so everyone was on the same level. When that joint closed, we went to the other nearby one, which had high-tops. Even if we didn’t sit down, our friend had to crane his neck to look at us, trapped as he was, and the sheer frustration and helplessness was impossible to avoid.
At one point, we heard that a famous inventor was coming out with something that he said would change the lives of millions, and we speculated that it was maybe a wheelchair that could rise up, climb stairs, and could understand the needs of people. Something that could help to restore a robbed sense of belonging. It wasn’t – it was the Segway, of all things. But now, Santa Clara’s Intel, along with Stephen Hawking, have developed a smart wheelchair that is using biometrics and mobile technology to alter the lives of the disabled.
Hawking and smart wheelchair technology
There are few people who can relate to the suffering of an ALS victim more than Stephen Hawking, who has survived with it for decades, creating brilliant theories and changing the way we view the universe, never not fighting. He is amazing, full stop. So, on a personal level, it is fitting that he is partly behind the design.
What the Intel interactive wheelchair can do is remarkable – it is connected to the Internet of Things and uses biometric technology to let the user, and anyone else monitoring it, know not just the user’s health, but also the state of the wheelchair. Information from battery life to the user’s heart-rate, blood pressure, blood-sugar level, and other information can be processed immediately.
There’s a reason why this is such a big deal. These are vitals that have to be constantly monitored on someone who is so ill, especially if they are unable to speak (something which has happened to Hawking, though not to my friend). They need to be monitored to see if anything is going wrong, because while the healthy can withstand disruptions, those same disruptions can butterfly fatally in people whose systems were weakened.
But don’t think of this as just a time-saver: it is a time-giver. Without vital signs needing to be constantly checked, the wheelchair user doesn’t have to be watched around the clock, and their life doesn’t have to revolve around checkups and being poked and prodded. The chair does that, and sets an alert if something goes wrong. It frees them to explore more, to push the boundaries of these new limitations, and to find more about themselves. In a sense, it helps to give back some of what disease has taken away.
It isn’t just for the patient either – it also frees loved ones to worry less and take a little bit more time for themselves, too. That isn’t selfish; it is human, and people constantly taking care of a sick loved one need relief, both physical and mental. It also takes away some of the misplaced, but still genuine, burden of guilt from the person who is sick, and feels like they are a millstone. Everyone’s lives improve.
Raising high the wheelchairs, robotics
Of course, that is all good and great, but it doesn’t quite solve the problem of being at the same level as the rest of your drinking buddies. That could be coming, though. Smart robotic technology will allow a wheelchair to adapt to its surroundings, whether that is rough terrain, stairs, curves, or a maddening high-top at a bar. A wheelchair can learn, just as a robot can, and just as your smartphone and wearable tech can learn.
That’s not the only news from Silicon Valley. Outside of the remarkable Ice Bucket challenge, there are new steps taken in the fight to cure ALS and other terrible neurodegenerative diseases. Calico, the Google-funded research group, is beginning to plunge into finding cures, or at least symptom-stoppers, for diseases like ALS and Parkinson’s. With the weight of Google behind it, and the innovation now open to us, there is at least a reason for optimism.
Calico is of course part of Google’s quest to cure aging, and possibly find a kind of functional immortality. That’s all well and good, but for me, that should be a side project at best. There are beasts among us, lurking in the DNA of people, seemingly distributed at random – these diseases strike the good and the bad, the old and the young, and they take and they take and they take.
But we’re at the point where we can take back. Silicon Valley has changed the world, and now it looks like they’re not focusing just on what they can do, but on what they should do. It can be easy to be cynical, and see a profit motive behind this, but really, if it helps people, it is a good thing.
It’s too late for my friend, who died 10 years ago this fall. He never lost his spirit though, and he’d be thrilled to know that even if it was too late, the wheelchairs we dreamed over during those long and laugh-filled Saturday afternoons are coming. 10, 12 years ago, we wouldn’t have known what wearable tech or smartphones or biometrics were, but now they are making dreams come true. I wish I could look him in the eye, raise my glass, and toast these impossible realities.