In the opening scene of The Shape of Water–which took home Best Picture at last night’s 90th annual Academy Award ceremony–the waters cradle our protagonist Elisa’s delicate body, draining away in time for her to masturbate in that opening scene, conveying her as a sexual being before her disability – muteness – is even introduced. Her sex scenes with her lover are gentle and choreographed works of watercolor. She is mute, but she’s also deeply compassionate, able to love and be loved.

But then the mute woman sings. In her dreams.

Screech.

The Shape of Water had such great potential to present Elisa as a whole person, showing not only her sexuality but her disability as a core part of her identity. Just think: the filmmakers wouldn’t have removed sexuality from her in a dream, but disability–as told by these abled actors and writers and director–gets thrown aside. When abled people write our stories, they tell them with pity, failing to see disability as something other than a flaw that must be cured. Of course Elisa can sing in her dreams, because that’s what she would like, they assume.

Director Guillermo del Toro’s artistic moves in his monster love story are insultingly obvious, as usual with his style, presenting from the beginning the idea that humans are the real monsters. But still, the film never loses sight of the idea that the monster is something less than human, not meant for this world. So of course that monster is the only creature able to love Elisa–the mute woman–romantically, as her poetic and tragic ending in the sea declares her to be less than human as well, not meant for this world.

Disabled people view our lived realities as part of our identity rather than something to be excised and defeated. Disability isn’t something that robs us of dignity, like a story meant to be overcome, but rather a part of who we are.

I’m a disabled woman, a former special education teacher, a disability policy activist. As The Shape of Water and the majority of other Best Picture nominated flicks from last night’s awards show wrestled with disability far more than any previous years’ grouping, friends asked if I was excited. I knew excitement wasn’t my emotion, but I couldn’t name the real one at first. Ultimately I realized lament was my sole response. This could have been a year for disability on the screen, but it wasn’t. It was a year for ableism instead.

•••

In December, moviegoers flooded theaters for a heartrending story of white-abled saviorism. As a piece of fiction, The Greatest Showman would have excelled as a spirited soundtrack of hope for tomorrow. But instead, it’s introduced by Hugh Jackman and Zac Efron as a historical piece on Phineas Taylor Barnum, great abuser of people with any difference–from race to disability–in show business and architect of the freak show concept. The film is meant to be spectacular, but once history and truth are known, it’s clearly a spectacular shitshow.

Phineas's dehumanization of disabled people continues to play out in the public square now.

The full truth of Barnum would make any historically accurate movie more fitting for horror than musical. I don’t think the soundtrack would be topping the charts if it included a ballad of his attempts to traffic women from Turkey for his freak show, nor if there was an anthem to Joice Heth, the enslaved disabled black woman he purchased, exploited, worked to death with 12-hour shifts six days a week, and then profited from after death as he sold tickets for fifty cents each to 1500 spectators to see her autopsy performed publicly–just another show from this horrid showman. A true movie would include his minstrel performances with full blackface, along with the historical backdrop of the Civil War occurring during that same period.

In another example of racism and ableism intertwined, Barnum offered money to the poor black parents of William Henry Johnson, a man born with microcephaly, in order to display Johnson as Zip the Pinhead. Other times he was called by the odd alternative and dehumanizing name “What Is It?” in which his pronoun is the object-focused it rather than human-focused he. After they accepted, Johnson’s small head led Barnum to dream up racist and ableist storylines in which he declared both African and disabled people to be deficient and called Johnson a “man-monkey.”

Some historians stress that Phineas paid his performers (or purchased and leased them from others) at a much higher rate than other freak show managers of the time. But as a disabled mother to several disabled children, there is no price at which I would accept our mockery as worthwhile. Yes, I am a woman with economic privileges as well, but it still is an illogical stretch to portray Phineas as a philanthropist for offering more money in exchange for exploiting disabled people than those who did the same for less. Sure, he was a better businessman in that regard, but he wasn’t a better person.

Those horrors should make any depiction of Phineas’s life much darker than this movie. His dehumanization of disabled people continues to play out in the public square now. People with disabilities are called freaks and bullied with jokes about going back to the circus, as depicted in the 1932 horror flick Freaks, or even in this year’s Best Picture nominee, Three Billboards Outside Ebbing, Missouri.

In one of the best scenes in that movie, Mildred Hayes, played by the sublime Best Actress winner Frances McDormand, goes on a date out of a sense of duty with James, a Little Person played by Peter Dinklage. As her ex-husband passes their table with his girlfriend, he says, “I was going to take her to the circus later, but there’s no need now.” Three Billboards at least calls attention to this disability discrimination instead of treating it like just another joke or a positive act. This is notable, but the film still contains multiple uses of “retard” and “midget” and “the disabled” as slurs. So yes, Three Billboards offers better disability depictions than the lies of Phineas, but that’s still too low of a bar for kudos.

We've set our bar so low if we're trying to defend The Greatest Showman. But when I bring up that fact, the responses of others remind me of what Phineas exploited most in his audiences: their desire to be entertained, even when they know it’s all a farce.

This all runs headlong into a slogan that’s been a rallying cry for disability rights activists for decades: Nothing About Us Without Us. In 2018, I’m discouraged that we’re still needing to argue that point. In the hashtag #DisTheOscars, created by activist Imani Barbarin, disabled people collectively lamented this point last night. Actors get accolades for playing us while we aren’t cast or paid, and directors receive awards for making a half-assed attempt of telling the truth about disability when we should be getting whole asses by now. This is how we end up with story after story centered on overcoming disability as something wholly undesirable, while we disabled people view our lived realities as part of our identity rather than something to be excised and defeated. Disability isn’t something that robs us of dignity, like a story meant to be overcome, but rather a part of who we are.

When people live with disabilities, they experience ableism in higher unemployment, lower pay, and life-threatening debates over their needed healthcare. Yet when abled actors play disabled roles, they experience the opposite.

I am a white cisgender woman. I don’t frame myself as a person with whiteness, a person with cisgender-ness, or a person with woman-ness. Each of those is acceptable to list as essential parts of who I am. Likewise, I am a disabled woman. My disabilities are core to who I am as a person, in a complex dance of acceptance and bodily understanding and changed expectations. In film and television, we’ve begun to move beyond a sheltered and privileged understanding of other identities, but disabilities are still just there for the plot.

•••

When you start to center disabled people in telling their own narratives, you discover two models of disability: medical and social. The medical model of disability views disability as impairments and deficiencies. In this view, disability must be cured, and an inability to obtain a cure is always sad.

In Get Out (which deserved to win so many more awards than it did), I took notice when Chris seemed to find a sympathetic ally in Jim Hudson, a blind art dealer. I thought, “Finally, a disabled character who is a friend instead of a villain!” The disabled bad guy trope is not only ableist but also overused. As the movie progresses, though, we discover that Jim is planning to take over Chris’s body in a racist surgery scheme. Even though Jim doesn’t fully agree with the practice, his desire to discard disability–an example of the medical mode of thinking–trumps his principles about shared humanity.

The social model of disability, on the other hand, considers disability to be caused by social, structural, and cultural barriers limiting access for disabled people. Rather than viewing disability as something to be fixed, these barriers are what need to be removed to reverse exclusion.

Our stories will never be accurate when they’re written and spoken and created from the souls of those without disabilities.

I found many films in 2017 that present this model. Darkest Hour, for instance, shows societal acceptance of a common disability, with a visibly ill Churchill using a cane, which is both historically accurate and presented without fanfare. Likewise, Dunkirk shows disability caused in war, neither calling undue attention to it nor sugarcoating the struggles. Roman J Israel, Esq. includes an excellent performance by Denzel Washington as an autistic lawyer, presenting this as just another facet of who he is. Baby Driver presents the story of trauma and sensory issues as part of the character rather than something to be cured or, conversely, the entirety of who Baby is.

None of the actors playing these characters are actually disabled, though, and that matters. Disability is a lived reality for 19 percent of our country’s population. When people live with disabilities, they experience ableism in higher unemployment, lower pay, and life-threatening debates over their needed healthcare. Yet when abled actors play disabled roles, though, they experience the opposite. Just take a look at Wonder.

When my daughters read this book, they insisted I should as well. I loved the story of Auggie, a child with significant craniofacial abnormalities due to Treacher Collins syndrome. When I heard it would be made into a film–one nominated for last night’s award for best makeup artistry–I was hopeful.

Then I saw previews, and I was confused.

A deep story of self- and community-acceptance for a boy with obvious disabilities–described in the book as severe enough to “make other ordinary kids run away screaming in playgrounds”–turned into a superficial one about a cute and slightly different kid. In casting Jacob Tremblay as Auggie, they missed the opportunity to cast a child actor with actual craniofacial abnormalities.

In addition, the filmmakers consciously chose for Auggie’s facial differences to be less intense than described in the book, as if people with syndromes like Auggie’s are too grotesque to feature on the screen. The movie’s Auggie can eat like typical kids, while the book’s Auggie eats “like some prehistoric swamp thing” with crumbs falling from his mouth.

Mr. Tushman, the principal, tells parents of one bully, “Auggie can’t change the way he looks, so maybe we can change the way we see.” If it weren’t so insulting, that line would be laughable in a movie in which they literally changed the way Auggie looked to protect audiences from seeing what was actually described in the book. Let’s just say I let out a deep sigh of relief when Darkest Hour won the Oscar for makeup because I did not want to see Wonder win.

But last night wasn’t entirely grim for disabled people, though. Winner of the Oscar for Live Action Short Film, The Silent Child tells the story of young Libby, the youngest child in her family and the only person in the family who is deaf. Until she’s ready to start school, Libby has had no language, so she is assigned a social worker who can help Libby transition to school and learn British Sign Language so she can communicate.

The best part of the film? Libby is played by a previously unknown actress named Maisey Sly, and six-year-old Maisey is profoundly deaf. The Silent Child is a work of art on its own, but this rare and absolutely needed choice to cast a disabled actor for a disabled role–to pay us and not just play us–is striking. Of all the disability-related nominations, this short film is the only one to actually get it right on multiple levels.

•••

Watching Elisa slowly teach words to her monster lover in The Shape of Water reminded me of The Miracle Worker, the critically lauded 1962 film about Helen Keller. In that film, learning to speak became the crowning achievement of Helen’s life. But in reality, her story continued as an activist for disabled people, women’s suffrage, birth control, and pacifism. Her story includes so much more than her disability.

This is why that disability rights slogan must apply to film and television. “Nothing about us without us!” we cry, because we deserve more than table scraps. “Nothing about us without us!” we chant, because our stories will never be accurate when they’re written and spoken and created from the souls of those without disabilities. And as I watched the Oscars, “nothing about us without us!” was my heart’s wail, as all the poor disabled representation in these movies only looks award-worthy through the eyes of voters who lack any diversity in ability.

If you won’t take us and our lived experiences into your project, then take our stories out of your mouths, off your pages, drained from the water in which you create. Disability isn’t a prop to roll out while disabled actors, writers, and creators are ignored. Nothing, on the screen, about us without us.

More by Shannon Dingle