After an evening of particularly intense user testing, it was clear that our experimentation had tired Aaron out – despite our device being easy for him to use, for the purposes of experimental validity, we had to ask Aaron to take a number of photographs using his current, physically-draining methods. At the end, we sat down with him to try and get some feedback. While our conversation started out quite innocuously, it took a jarring turn. After he thoughtfully indicated a few areas of modification to us, I asked him if there were any other changes we could engineer. He looked at us and said wryly, “You know, there’s one other thing…it would be awesome if you guys could engineer me a new spinal cord. That would be magical…you wouldn’t even have to do experimentation… I’d just come to your presentation and have Vinny teach me some of his Bollywood moves…they’ll see me dancing and know it worked.” He chuckled, and I kind of laughed along. It’s the first time I had ever heard Aaron allude to his disability with any sort of longing or wistfulness. I saw his face drop as he turned away, and I’ve never felt more guilty and helpless.
Yes, Aaron had trouble taking photographs, and yes, we’ve helped him find a way to accomplish that goal. But what have we actually accomplished?
We’re here at MIT. We’ve been selected for our intellectual capacity and ambition, and we’re charged with leveraging that aptitude and drive to generate necessary and positive change in the world. As a technologist and engineer, I find that working on assistive technology is among the most noble ways to give back to the world and community around us; it was once said that you can judge the height of civilization by how a society treats the young, the old, and those in need. Yet that simple exchange with Aaron about a week ago has made me question this very foundational belief of mine.
The thing is, I think we could ask Aaron to enumerate every instance where his disability prevents him from handling a situation in the way he’d want to, and we would still never be able to give him the holistic human experience he desires. There’s a term for this in biology – emergence. The idea is that in most living systems, the whole is incredibly more complex and capable of higher function than just the sum of its parts. I read an article once which said that if you were to give the best scientists in the world all the chemicals that comprise the human body in exactly the correct proportions, not one of them would be able to create life – the whole is truly greater than the linear combination of the parts. I hold an optimistic belief that generalizable, cheap, and effective models for mass production and dissemination of assistive technology exist; we just have to unearth them. I and other like-minded engineers will continue to work hard to make that day arrive sooner, but to what end? We may be able to develop a model for assistive technology that combats the known issues of generalizability, political red tape, and cost, but moments like those make me question whether we can ever make Aaron and other individuals with disability really feel human again. Is assistive technology just a stopgap solution because we can never really solve what hurts individuals with disabilities at the deepest level? Is AT… an illusion?
It’s a philosophical struggle I’m prepared to grapple with for the rest of my life. I’m torn between knowing and believing that I’m doing good for the world in body and mind and submitting myself to the fact that our efforts are for naught. In the meantime, though, I’ll keep chugging along – solving problems as they come and looking up towards the future in hopes of a lasting resolution.
I pray for the day that Aaron dances.