Could generative AI be useful in SMA caregiving? I hope not.

It’s a running joke in my family that, if we had the money, we’d build me a robot caregiver like Baymax from Disney’s “Big Hero 6.” Training human caregivers is nothing short of exhausting. Humans need food and sleep, they forget things, and most problematic of all, they have their own perspective on how life should be. Machines, on the other hand, don’t. They can be built to specifications. Everything should run much more smoothly — a minor miracle when you have a rare disease like SMA.

With the use of artificial intelligence (AI) surging in almost every industry, I unfortunately find myself increasingly bothered by my family’s joke about caregiving. Seemingly everyone and their mother — including my mother — have told me about the impact of AI on their jobs. But I’m puzzled by it. (Using AI to write emails?!) “If this is where we’re at,” I thought to myself, “where people can’t spend five minutes to have a conversation, it’s only a matter of time before caregiving becomes the new domain of our AI overlords.”

I should note that my concerns are primarily directed at generative artificial intelligence (Gen AI) — such as ChatGPT, DeepSeek, Midjourney, and Sora — and any technology that may evolve from it. Artificial intelligence is a vast field, and Gen AI is a small, popular, and rapidly growing subsection of it. AI in other forms, such as Apple’s Siri and Amazon’s Alexa, has assisted us for quite a while now, without being as revolutionary as Gen AI.

I should also state I’m not entirely opposed to Gen AI. When ChatGPT began soaring in popularity, I was recruited by a local university to research its usefulness for autistic users. I discovered that it can effectively bridge the communication gap between autistic and nonautistic users, as some individuals reported that Gen AI helped them understand certain phrases and social norms.

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My concern is how swaths of the population are outsourcing things like creativity and communication to machines, when the technology is built by aggregating data produced by our blood, sweat, and tears. To me, the human experience is irreplaceable. Nowhere is that clearer to me than in the field of rare disease advocacy. What could a machine know about living with SMA, as I do, or caregiving? How could it understand the grief of losing function in your body? Or the thrill of being in a community with someone else who shares your disability?

Sure, AI can regurgitate the cold, hard medical facts of SMA. But can it understand what living a disabled life feels like? I’d say no. When I’m hospitalized, I don’t think it’ll be a robot at my bedside. It’ll be my mum, who’s held me all my life, and my brothers, who keep me calm when I’m scared. It’ll be my friends, who’ll remind me of the warmth outside of the hospital’s cold, sterile environment.

“But Sherry,” you might say, “AI could make life more accessible for you! Like giving you back the ability to create digital illustrations!” My response to that would be that I could commission human artists instead. I’ve already had the privilege of commissioning a few, and every collaboration created magical memories for me.

Shouldn’t we stop to think about what we’re actually giving up when we outsource pieces of our lives before we say that machines should take over? Shouldn’t we wonder if we’re letting empathy waste away like a muscle when we don’t engage with the people around us?

All that said, I don’t believe we can have proper debates about AI until we acknowledge that it’s a symptom of a problem, rather than a problem itself. As a society, we were already becoming increasingly disconnected from one another because we were overworked and overwhelmed. Of course, people would want to outsource caregiving, communication, and creativity in that condition. But what if we didn’t want to rely on machines as our default? What if we valued humanity a little more, flaws and all, and could rely on community as our default instead?

How do you feel about this issue? Please share your thoughts in the comments below. 

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.