I’m going to be reflecting on Hulu’s original series “The Act.” I bring this up at an odd organizational moment for three reasons:
There be (mild) spoilers.
Serious Trigger Warning for abuse.
The mention is in no way an endorsement of this “The Act” nonsense.
Video: "The Act" Official Trailer
In Disability Theory, Tobin Siebers describes prejudice against disabled people as rooted in narcissism. He thoughtfully explores the works of psychological analysts who link disability to narcissism. One such analyst writes that disabled folks convert “defectiveness into a mark of distinction,” and Siebers describes how these analysts believe “People with disabilities . . . demonstrate a conspicuous resistance to reality, taking flight into an active fantasy life where their disabilities justify special privileges” (40).
In short, there is a mistrust of the lived experiences of disabled people, an overwhelming doubt of the legitimacy of disabled ways of being.
This doubt is redoubled in Hulu’s “The Act.” One part true crime drama and one part disability fetish, “The Act” is based on the real life story of Dee Dee and Gypsy Rose. In the show, Gypsy Rose struggles with a range of disabilities and chronic illnesses alongside Dee Dee—Gypsy’s mother and caregiver.
Except before the conclusion of the first episode, we find out Dee Dee is running a long con, abusing her daughter to guarantee access to prescription drugs (which Dee Dee is taking); to con charities (they have Habitat for Humanity build them a wheelchair accessible home); and using Gypsy’s disabilities as cover for five-finger discounts.
The cruelties of Dee Dee’s abuse are upsetting—both real life Gypsy Rose and her Hulu counterpart were forced to endure unnecessary and invasive medical procedures, were denied any semblance of social life, and were manipulated into believing they needed a powered wheelchair and other medical interventions.
As a disabled person and someone who advocates for others with disabilities, I can’t stand “The Act” (but in fairness—because of my particular disability—I find it hard to stand at all). I am most concerned with how “The Act” reifies and reinforces ableist doubt of disabled people and further maligns disabled experiences.
First, and I already warned you about spoilers, I’m bothered by the way the murder of Dee Dee is portrayed. Yes, Dee Dee was in fact murdered by Nick Godejohn--who is autistic. Yes, this event happened in real life. But the extra attention given to this narrative further demonizes neurodivergent folks. There are so few portrayals of the beauty of neurodivergence and positive examples of neurodivergent people.
Even self-proclaimed autism advocates like Autism Speaks (or “Autism Speaks for Itself,” as some of my neurodivergent friends call it) has failed to positively reflect neurodivergence. Actually autistic activists have pointed to how Autism Speaks itself contributes to the othering, the dehumanizing of autistic people. And—as Melanie Yergeau reminds us—Neurodivergent bodyminds are already too frequently maligned and mistrusted, their own ways of knowing dismissed, even read as childish (156-157). And this malalignment of neurodivergent folks has serious consequences, like increased instances of police violence.
Secondly, and doubling down on the mistrust of disabled people, is Gypsy’s forced disability masquerade. If you’ve not followed disability rights activists critiques of abled people cripping up to take on disabled roles, I recommend you read disability advocate Imani Barbarin’s recent takes on Lupita Nyong’o and Bryan Cranston. But for my purposes here: the media connections and cultural understandings many people have about disability are actually based on abled actors.
In Disability Theory, Siebers writes about on-screen disability performances as akin to drag performances, which make the stigma of marginalized sexualities most visible. Siebers compares Dustin Hoffman’s roles in Tootsie (1982) and Rain Man (1988), and how he is pretending--in both cases--to be something he is not (115).
But of course, in “The Act,” the viewer is reminded they are watching this ableist drag show, as we watch the actor faking the disability reveal they were faking disability. The high visibility brought by this kind of performance does not highlight the stigma, but reinforces the mistrust.
This portrayal of faked disability has become something of a trope. George Costanza (Jason Alexander) faking injuries in the Seinfeld episode “The Caddy” (1996); The Ringer (2005) where character Steve Barker (Johnny Knoxville) feigns disability to enter the Special Olympics; or Keyser Soze (Kevin Spacey) faking disability in The Usual Suspects (1995).
This portrayal reifies a mainstream myth that feigning disability is a widespread problem. This myth manifests itself in multiple ways. One iteration is the myth that disability benefits are a widely abused program and that claim is often repeated—though demonstrably false. This myth stems directly from the mistrust of disabled people, and has been repeated by President Trump. A current proposed line item in the Federal budget would even set aside Federal money to monitor the social media accounts of people receiving disability benefits to prove they are faking.
But it’s not just benefits. Disabled people deal with public doubt, scrutiny, and downright antagonism for any number of things including parking spaces (“You don’t look disabled to me!”); academic or work accommodations (“I’m not going to excuse you because you were a little depressed. . . get over it.”); using mobility devices (“You’re too young to need a cane.”); or any range of terrible experiences. Earlier this year, I was confronted in a hardware store by a man loudly insisting that if I were really disabled, I wouldn’t be buying drill bits.
And, yes, “The Act” is based on a true story. But why is this a narrative about disability that gets centered?
Why this coverage that reinforces the cultural doubts of the lived experiences of disabled people—doubt compounded for folks who happen to also be women, queer, POC, working-class, and/or other marginalized identities—when there are so few positive representations of disabled folks in media to begin with.
Over 20% of Americans have a disability yet less than 2% of our television characters do (and 95% of those characters are played by abled actors). But why does that 2% need eight versions of this story? We absolutely don’t need another representation that casts doubt on the lived experiences of disabled folks.
Non-Linked Works Cited
Siebers, Tobin. Disability Theory. Ann Arbor: The University of Michigan Press, 2011.
Yergeau, Melanie. Authoring Autism: On Rhetoric and Neurological Queerness. Duke University Press, 2018.