Why the disability representation in ‘The Beauty’ is a hot mess
The series dwells on the grief of rare disease but ignores the strength
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To its credit, “The Beauty,” a new sci-fi, body-horror miniseries from Ryan Murphy, co-creator of “American Horror Story” and other acclaimed projects, dives deeper into the topic of genetic editing and disability than most sci-fi shows I’ve seen. Typically, as in “Jurassic World: Rebirth,” genetic editing is framed either as a potential boon for humanity or a doomed act of playing god. Rarely, though, do we hear from someone living with a genetic disability like SMA. The very people with the most at stake are usually left out of the narrative.
What sets “The Beauty” apart is that a rare condition is central to the plot. The character of Byron Forst, a CEO seemingly inspired by actual tech billionaires, faces an FBI investigation into his experimental cure-all genetic treatment. To get the investigation dropped, he exploits Joey, the teenage daughter of FBI supervisor Meyer Williams. Joey has Hutchinson-Gilford progeria syndrome, or progeria, a rare genetic disorder that causes rapid aging from infancy.
Forst offers to cure Joey if her father agrees to bury the investigation. To back up his claim, he points to an SMA type 2 case as evidence that his treatment will work for Joey as well.
“This level of severity,” Forst says, gesturing toward a child in a wheelchair using an iPad, “he wouldn’t have made it to his 25th birthday.”
At this point, as a 27-year-old with SMA type 2, I can’t help but roll my eyes. A quick Google search — or a glance at SMA News Today, wink, wink — shows that people with SMA type 2 often live well into adulthood. The Cleveland Clinic lists our life expectancy as 20 to 40 years, and that probably doesn’t even factor in new disease-modifying therapies like Evrysdi (risdiplam), Spinraza (nusinersen), Itvisma (onasemnogene abeparvovec-brve), and Zolgensma (onasemnogene abeparvovec-xioi), as well as additional options that are in development. These treatments are expected to slow SMA’s progression and extend patients’ lives.
Maybe Forst spreads misinformation so “The Beauty” can underline his questionable morality. (Not that it’s necessary — his “miracle” treatment is already under investigation, since a rogue earlier version is out in the world as a sexually transmitted disease that causes people to overheat and, eventually, explode.) Still, the episode never corrects his medical inaccuracies. That oversight might come across as lazy writing to SMA patients, caregivers, and healthcare professionals.
After that scene, I’m wary of how the series will portray progeria and those living with it.
The eye of the beholder
Joey appears in only a handful of scenes to date, and for most, she’s portrayed by Kaylee Halko, a 22-year-old who actually has progeria. That casting choice is remarkable, given Hollywood’s long track record of casting nondisabled actors in disabled roles.
But after learning more about Halko, I wish “The Beauty” had captured the vibrancy and intelligence she brings to her own life in the character of Joey. Halko regularly posts TikToks of herself dancing, laughing, and going on adventures. She currently has over 530,000 followers, and her videos recently captured the attention of The New Yorker.
Joey spends most of her time confined to bed, nearly dying when we first meet her. Her parents debate whether she should have a do-not-resuscitate (DNR) order. It’s only after Forst’s cure that she’s shown getting out of bed, at which point, the role is taken over by a nondisabled actor.
Regrettably, while “The Beauty” shares the perspectives of Joey’s parents, we don’t get to hear much of her own voice. She has no say in the DNR decision or regarding the cure. She isn’t aware that Forst is using her to manipulate her father. The show simply assumes she would want to be cured, glossing over the fact that not every rare disease patient shares that desire.
The result is a portrayal that dwells on the grief of living with a rare disease but ignores the strength and resilience that so often accompany it.
You might think no child should face decisions about DNRs or whether to risk the side effects of new treatments. But in reality, we do. I certainly have. The agency my parents gave me over my own life is one of their greatest gifts. They trusted me to be intelligent and strong enough to make the right choices for myself, just as many parents of rare disease patients do. That kind of trust and agency is something I wish more films and television shows would portray.
People living with rare diseases are more than bargaining chips, problems to solve, or just their parents’ children. Consider Halko. Or Sammy Basso, another individual with progeria who made significant contributions to research before his death in 2024. Consider me, or my fellow SMA News Today columnists. Isn’t it time the world started seeing our experiences — and our genes — through our own eyes?
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.
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