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The future we were promised

We thought technology would mediate between my disabled son and an ableist world. We got endless bureaucracy instead.

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A parent figure kneels down next to a child who is holding an iPad, which is connected by a wire to a larger iPad. The two figures are surrounded by toys, as if in a child’s room.
Illustration by Alex Castro / The Verge

My son is 15. He is also an autistic boy with Down syndrome. From the moment he was born, well-informed experts, well-intentioned fellow parents, and a whole universe of marketing suggested that technology would provide answers to many of the problems we’d end up facing. 

This is not the technological future we were promised when he was born. We thought by now we’d have devices, apps, and pharmaceuticals that would help him learn and communicate more easily, while also keeping him safer in a hostile world. Technology can provide disabled people with wondrous new tools, but only — as with so many kinds of innovation — when they are married to systems that take into account our complex and varied humanity.

It’s true, of course, that he relies heavily on technology — though maybe not the kind of tech that first comes to mind. When it comes to access, the most important devices are plastic straws and velcro straps on shoes. Elastic waistbands are also pretty great. He used to rely on plastic Mardi Gras beads to stim with, motions that in fact make the world more accessible by giving him needed input. These days he uses rubber stretchy strings that have a more pleasing weight. When it comes to therapy, he’s doing amazing work developing verbal speech with a collection of colored tubes and shapes that signify specific sounds and can be used to cue him (by placing them on his lips and tongue) to position his tongue in order to make the sounds he wants. He also uses a $3 hand mirror we bought at the local drugstore, giggling as he watches his own face. 

Like many teens, he watches YouTube or streams music on Amazon. His favorite videos include music and video from the Just Dance games and the entire corpus of Sesame Street’s Ernie and Bert, which are amazing short-form explorations of emotion, language, humor, and daily living. Sometimes he watches them in German or Dutch. He used to watch superhero movies but has lately shifted into a creature-feature phase, finding clips of monster fights from the Jurassic Park and King Kong franchises. He could stream the movies of course, but he likes to skip to the good parts and re-watch them. In all cases, he likes to dramatically re-enact his favorite dances, fights, and puppet skits in the room as he watches. Honestly, it can be a bit loud, but what teenage boy doesn’t annoy his parents with his media choices and volume sometimes?

We were promised a future in which technology would mediate between my disabled son and an ableist world

Tech is just a tool or a plaything for him like any other. But we were promised more than that — we were promised a future in which technology would mediate between my disabled son and an ableist world. Instead, what is available to my son is driven more by arbitrary systems than by his needs and his personality. 

My son’s most significant needs relate to speech. By the time he was three, it was clear he was not going to predominantly use verbal speech, though he was learning to communicate in a wide variety of ways. His speech therapist at the time quickly sent us to a world-class facility to assess the best way for him to use tech to talk. At the time, Nico’s healthcare and education costs were covered by the “early intervention” programs in Illinois — statewide systems funded by federal, state, and local dollars intended to help children under three years of age meet “developmental milestones.” 

We tried a wide variety of devices, but because he had the manual dexterity to operate the simplest one, that’s the one the state would pay for. Within a few weeks after having it prescribed, we had a plastic box where you could literally cut and paste pieces of paper with words and pictures on it, and then use your voice to record sounds that then my son could press to play out loud. It was over a foot long. It cost over $3,000. 

A plastic box where you could literally cut and paste pieces of paper with words and pictures on it

There were much better, and much more expensive, dedicated speech devices on the market, many of which are in fact a marvel of engineering, and do not require exhausted parents to do arts and crafts. But what we needed, we thought, was a speech app; they were just becoming available on mobile platforms like iPads. We wanted Proloquo2go, one of a number of programs that can reproduce words or phrases by selecting from an infinitely customizable menu. It cost $250, which we didn’t have, and needed to be on an iPad, which we also couldn’t afford. The price would have been much lower than our state-funded arts and crafts box, but at the time the system wouldn’t pay for medical programs on non-medical devices. We ultimately got both the tablet and the app thanks to a donor. 

I’ve never forgotten the experience of cutting out little squares of words, trying to make them fit on his ultra-expensive device, knowing for sure that he was never going to be carrying this around as a teenager, let alone as an adult. What he’d be carrying, I thought — even back in the Dark Ages of 2009 — was a phone with apps, something flexible and multi-functional. 

Nico still has the label “functionally non-verbal.” For us, that means he speaks all the time. Sometimes he uses words he makes with his mouth that are recognizable as such — more so if you know Nico well enough to be fluent in his expressions. Sometimes he uses jargon, strings of sounds that are not recognizable as words, though again, people who know him can often discern meaning. We assume meaning is always present, whether we can discern it or not. 

He uses a lot of sign language, mostly for nouns (food, people, places, etc.). Behaviors are communication. If he takes his tablet, goes upstairs to his room, and closes the door, the message is totally clear. He still uses Proloquo2go, but mostly at school. When I try to get him to load up his app and tell me something, he stares at me, says, “no,” then proceeds to speak his mind with words or sign language, or sometimes just point. He knows I understand him. He’s not going to use tech just because I say so. 

Tech is just a tool or a plaything for him like any other

There are other high-tech solutions being sent our way, and they are probably useful for someone. But in a society where resources are scarce, even if that scarcity is arguably artificial, are they the best use of time and money? Pharmaceutical projects on improving memory and learning for people with Down syndrome have commanded significant funding with few results. Google is trying to train AI to better understand verbal speech from people with Down syndrome. 

Meanwhile, we’re just trying to get our local Medicaid to cover “functional therapy,” which focuses on skill development, independence in activities of daily living, and participation in the community. He’s been receiving the therapy all year and it’s been amazing for him, but the funding for it has since been exhausted. If Medicaid won’t pick up the bill, I’m not sure how to pay for it. I’m optimistic, but there’s plenty of paperwork ahead. I bet I could get him another $3,000 speech device a lot faster.

As I’m writing this, my son is downstairs watching YouTube videos. When we have dinner, he’ll stream music on an iPad, typing song titles into the app’s search box either from memory or from a list we’ve written down (at his insistence) on paper. He’ll eat while stimming, except for when he takes a dance break. 

There’s no app, drug, or device that’s going to transform my son or his interactions with others. And that’s just fine. He’s doing great and anyone who chooses to listen, who chooses to put in a little work, can meet him where he is.