Electing Technology for My Son's Independence
Personal Perspective: One man at Amazon helps navigate the technology we need.
Posted January 28, 2022 | Reviewed by Tyler Woods
- Technology is an incredibly cost-efficient road to independence for those with disabilities.
- Products that help disabled consumers are often best created by people who are themselves disabled.
- My son, who only has the most basic grasp of reading, writing, and typing, uses Alexa to find videos, turn on lights, and gather information.
Last year, my son and I were living in New Jersey while he attended a special autism school. Since it was just the two of us, I had to figure out how I could get to work early in the morning, while getting him dressed, fed, out the door, and onto the bus, all by himself. The problem was, even though he was fourteen, he couldn’t put on socks, tie shoelaces, or tell time, since numbers were still a mystery to him.
My first priority was getting my son independent, quickly, and with a limited budget. I set an Alexa in every room, reminding him every ten minutes: you should get in the shower now, you should get out of the shower, you should be eating breakfast. I installed Amazon Blink cameras so that my wife could check on him from Amsterdam, or I could from work, every morning, to tell him that his shirt was inside out or that his shoes were on the wrong feet. It took a few weeks, but for the first time in his life, he was on the road to independence. Our retired neighbors, who were on-call, didn't have to help out once. My son was incredibly proud of himself and had a newfound confidence I had never seen in him before. The most amazing part: I did it for under $200, far less than it would have been to hire help.
It was the Amazon Basics microwave oven that really changed so much of my son’s life. It was cheaper than most microwaves, fit easily in our small kitchen, and worked seamlessly with our Alexa. My son, who only has the most basic grasp of reading, writing, and typing, was already using Alexa to find music, videos, turn on lights, and gather information, but this microwave was different. He was fourteen, constantly hungry, and since time was such a foreign concept to him, with the Amazon Basics microwave, he no longer had to connect numbers to the food he was eating. Instead, when he came home from school, he could heat up cans of soup, chili, pizza, hot pockets, or leftovers, all by saying, simply, “Alexa cook my food.”
One early afternoon, when I got home from work, our apartment smelled like burnt plastic. My son came out and started apologizing. I discovered that he had put a can of soup directly in the microwave. I wasn’t upset with him. His autism can often be a fog that he spends much of his day cutting through, and, in this case, he had simply forgotten that you cannot put metal in a microwave.
The experience made me ask: If Alexa can give my son this newfound freedom, why can’t it also watch him put a can of soup in the microwave and either tell him to stop or shut it down, contact me, and let me know what happened?
There is a memoir and movie about Jean-Dominique Bauby, a former editor of Elle, called The Diving Bell and The Butterfly. Bauby has a stroke and is paralyzed from head to foot, is debilitated by a “locked-in” syndrome (a diving bell is often a single-person steel container that deep-sea divers use to get back and forth to their work underwater). His mind is completely intact, but he is unable to express himself until a therapist teaches him how to communicate (and even write his memoir) by blinking to corresponding letters. Bauby says of his returning connection with the world, “My diving bell becomes less oppressive, and my mind takes flight like a butterfly.”
It was Peter Korn, the director of accessibility for devices at Amazon, who suggested I read Bauby’s story.
“People with disabilities have massive amounts of friction in their lives," he said. "Their paths are filled with potholes and roadblocks. For them, Alexa can be hugely impactful.”
Peter spent his entire childhood in Berkeley, a place he calls, "The real home of the independent-living movement." His father was a professor of criminology at UC Berkeley then later at John Jay College in New York. He was a man who worked with Bobby Seale and the Black Panthers, and advocated for prison reform, especially to end solitary confinement. As a child, Peter remembers hearing how his grandmother intentionally lost eviction notices from Mayor LaGuardia's office, at least until the City Council passed a law banning evictions.
When I asked how working at a company like Amazon would be viewed by his civil-rights activist father, Peter said without hesitation, “I hope he would be proud.” Instead of solving lawsuits, Peter said he was using technology “to solve problems that can really be best solved by technology.”
Peter’s first role models were his half-brother and his wife, both programmers. His sister-in-law was blind. He was raised to see that people with disabilities weren't weird, they weren't scary, they weren't “other.” The Center for Independent Living (CIL)’s office was right next to Peter’s favorite stereo store, Uncle Ralph’s, just a few blocks from UC Berkeley, where he attended college.
“There were two big, current civil rights issues emerging and starting to flower in the 70s and 80s in Berkeley," he said. "One was LGBTQ or really at the time, just G and L. The other was disability rights. I realized I could do civil rights work as a computer programmer if it was around accessibility.” He began developing software that made the silent visible and their lives easier.
“Years ago," he said, “people who couldn’t use speech to communicate had specialized speech generating devices, glorified speak-and-spells. They were incredibly ‘othering.’ Once that software came to tablets, an iPad and Fire tablet and so on, they’re using the same mainstream tech as everyone else.”
When my own son points his iPhone at a sign and has the message read and transmitted through his headphones, he is no longer illiterate, “othered,” but is simply another teenager glued to a screen.
“Fifteen percent of the world’s population has a disability,” Peter said. “That’s over a billion people.”
That's a considerable market for Amazon. Products that help disabled consumers are often best created by people who are disabled.
“When I joined Amazon eight years ago, we had around 83,000 employees," said Peter. "The last figure I saw was 1.3 million. We can't keep growing if we only look at white, hetero-cisgendered males in America. We need to look at every race, every gender, every disability. The developer of our VoiceView screen reader, the initial developer, is a blind programmer. He tells the story of giving his three kids Amazon Fire Tablets at Christmas. He was able to set them up for his kids using the screen reader he helped create.”
Amazon has Dr. Joshua Miele, a blind principle accessibility developer and MacArthur Genius recipient, and Brendan Gramer, a deaf, senior UX design manager. There are many more employees with disabilities, some who have chosen to make their disability visible and others who haven’t.
I ask about the Amazon Basics microwave with Alexa, and how a product like that came into being. Peter told me:
- Amazon determines, often through customer feedback, whether someone is either hitting a brick wall or dealing with a substantial friction, prioritizing based on need. People who are blind need text-to-speech. That’s a brick wall. Older people with deteriorating eyesight could be helped with an enlarged font. That’s friction. How many people face this challenge? While one or the other may not always be addressed first, they are always a major priority.
- The trajectory of the cost of processors, RAM, networking, and cameras.
- People with disabilities are often on a limited income, so products need to be affordable. (My Blink cameras, on sale, were $15. My Amazon Basics microwave was around $50. My Echo-Dot was under $30.)
I am watching my son. Amazon is watching my son. The question then becomes: Am I signing over his privacy for his independence?
“The phrase ‘signing over someone’s privacy’ doesn’t sit well with me,” Peter told me. “It implies that privacy isn’t a sliding scale, where people choose different levels of privacy for different moments or experiences. The reality is that we disclose some amount of information in most of our interactions, whether digital or in person. For example, if I have a visible disability and you see me in person or enough of myself via video, then I have essentially disclosed that I have that disability.”
When I ask him about Alexa possibly making sure my son doesn’t put a can of chili in the microwave, he laughs slyly and says, “I’m not allowed to comment on future, unannounced products,” but hints that there is something coming. Computer vision is a computing-intensive task and it hasn’t hit a point where they can tie it into Alexa affordably. There is, for now, Alexa's “Show and Tell Feature,” which can "tell" you what you are holding.
And there is Alexa Together, a relatively low-cost subscription program that was designed for senior citizens, but can be adapted for people with disabilities, sending alerts when someone is up and about.
But it is The Diving Bell and the Butterfly that resonates when it comes to the Amazon Basics microwave, at least in terms of my son. Technology makes semi-independence affordable and attainable while relieving him from the diving-bell of dependence on caregivers.