MALLORY THOMAS: So, I want to start off by acknowledging how difficult it was for me to write this talk. In a country where fascism and authoritarianism are rising unchecked, at least unchecked by our government, talking about representation in the media can feel like rearranging deck chairs on the Titanic. I try to remember that seeing someone like you living, loving, and experiencing the same highs and lows, however, can be a balm to the wounds that are inflicted on us every day just for existing. On top of being an individual comfort, representation is a powerful tool. Having adequate representation for underserved people allows us to explore our identities and pick up labels for ourselves that we didn't know existed and that improve our quality of life once we apply them.

My own story follows a similar trajectory. I wasn't diagnosed with autism or Ehlers-Danlos Syndrome until about two years ago, even though, of course, I was born with them. My journey began with research and not representation, however. Making that journey on my own solidified the idea in my mind that disabled Black women need more representation. If I had been able to see women and girls like myself, I wouldn't have felt like I was a failure or a sorry excuse for a person for most of my life. In an era where we're seeing more representation in media for more different kinds of Black women and people in general, the absence of disabled Black women is a glaring missing piece of the mosaic of Black identity that we've created in film, television, comics, and novels.

To a disabled woman like me, characters like Olivia Pope and Annalise Keating still exemplify an aspect of the strong woman trope. Certainly, they're allowed to be flawed and vulnerable, but they're also expected to be super women that come out of their breakdowns like a phoenix. They burn and then rise from the ashes to take control of any situation. Even though they have help and relationships, they're still pillars of individual strength in a way that I could never be. I need a network of people in my life to make sure I eat properly, get comprehensive medical care, and can move through an inaccessible world. I couldn't survive on a diet of nonstop drama, popcorn, and wine. [audience laughter]

Women like them work twice as hard to get half as far and then fought their way to the top. As if that wasn't enough, they fight constantly to hold on to what they have. If they come up against a task that they can't accomplish, the moment is played for drama. Eventually, the thing that stops them from success is defeated, and we see them rally. The strong Black woman trope is still alive and well; it's just taken on a new form. One that is gentler to a more diverse audience. One that depicts toil for personal success as rewarding at the expense of health and safety.

As much as I love "Black Panther" as a film and Wakanda as a place, where were all the disabled folx? A place as technologically advanced as Wakanda probably had the coolest assistive devices in the universe, and we never get to see them. That didn't stop me from imagining things like hover chairs and scooters, but I wondered why the abled imagination never seems to go there when we see visions of the future in media. "Black Panther" is an exceptional film in part because it allows Black women to be so many things: experts in their chosen fields, warriors fighting for honor and pride in their country, and most importantly, fully- human. The characters are well-rounded with inner lives that aren't constantly under threat or forced to prove their worth by white supremacy. It's a crowning achievement in filmmaking, which is why it feels so hard for me to criticize it.

I feel a level of guilt when I talk about this. I feel shame for criticizing hard-won representation. I feel fear that I'll be called out for asking, “What about me?” I'm so used to living in the shadows of the Black experience as a disabled woman that I feel I should take the scraps and move on. The last Black autistic character on American television that I can recall was the alternate universe version of Astrid on "Fringe". If you ask me, Astrid as a character was purely ornamental in both universes. So to me, it wasn't a great victory for representation, especially when the actress that played her wasn't autistic herself. Which brings me to the issue of cripping up. This is what disabled people like myself call it when non-disabled actors play one of us.

For example, as much as I love Janelle Monae, she's cripping up in "Welcome to Marwen". "Luke Cage" is a great show, but instead of hiring a disabled actress to play Misty Knight, they used the magic of special effects to digitally remove Simone Missick's arm and give her a prosthesis. True representation isn't just about writing the characters and putting them onscreen; it's about making casting choices that prioritize disabled actors. It's about hiring us as writers and consultants. Even though I support the work of people like Ava DuVernay and Ryan Coogler, I don't hear them discuss the importance of expanding the image of Blackness in media to include disability as often or explicitly as they should. I was pleased to hear Lena Waithe mentioned putting disabled people in front of and behind the camera in a recent interview with Vanity Fair, but not enough people speak as plainly about that kind of representation.

Representation is important to me because it gives me space to exist. It gives me a shorthand to point to easily, to explain to people why I flap my hands when I'm excited or what echolalia is. Representation in media also helps people relate to folx that they may not know in their everyday life. It helps introduce them to new concepts of what it's like to live at the intersections of different identities. Showing disabled Black women in media helps to remove the stigma of being disabled in public. It helps doctors because they watch TV too, to see that, yes, we do exist and that the color of our skin doesn't negate any diagnostic criteria. Being Black and autistic can be a pretty lonely existence. The rates of diagnosis for people of color in general are so low that the community that we do have is very small. I wasn't diagnosed myself until very recently in part, because there was no one to point to and say, "I think I'm like them." I figured out something was different about me when I compared myself to non-autistic people and wondered, why can't I be like them? Although eventually my self-esteem improved once I figured out that I was autistic, believing something is "wrong with you" isn't a great place to start a journey of self-realization. I would've preferred to see a character on television or in film that I liked and related to and thought, I wonder if they're, I wonder if I'm like them?

I've been reading Brittney Cooper's book "Eloquent Rage," and in it, she talks about her deep and loving relationships with other Black women. I feel like that part of my life is missing because I didn't get to grow up like that, and I didn't get to have those deep relationships in my adult life either. I didn't get to see fiction depicting Black girls and women like me sharing a bond over chronic illness or being developmentally disabled. I still don't. The world feels very lonely when you look around and see so many life experiences depicted in fiction but not yours.

Television, books, and media taught me a lot about interacting with people that I wouldn't have learned otherwise or known instinctively as non-autistic people seem to. But at the same time, they taught me how to fold and mold myself into what an abled Black woman should be. Lack of representation added to my self-hate and the emptiness of living a life that felt wrong and was painful. I don't harbor any illusions about representation being a cure-all. I see other communities struggle to be recognized and acknowledged despite the momentum pushing shows, films, and books about them into the mainstream. However, I believe that putting disabled Black women in front of as well as behind the camera opens up space to have the conversations that we as a society need to have about what life is like at the intersections of Blackness, womanhood, and disability.

I attended a town hall recently for my local congressional Representative. He was asked by another attendee about what he planned to do to make the subways in New York more accessible. I cringed at the language my Representative used when he answered. I guess I can say who it is. It was Hakeem Jeffries. [audience chuckling]

He referred to people like me as “handicapped” and “people with physical challenges" rather than disabilities. The rest of his response made it clear that his politics were in the right place, but the use of those terms also made it clear that he didn't know about his disabled constituents, and he didn't know enough about us to know how we identify ourselves and how he should. While I don't think representation in media is the only piece of the puzzle in terms of educating folx like my Representative, Hakeem Jeffries, [laughter] I see it as part of a cultural inoculation that helps create a world where I don't have to spend what little energy I have constantly explaining 101-level terms or that, yes, Black people can be disabled and chronically ill. And, no, I'm not some kind of unicorn. [sighs]

I'll leave you with this: I'm a disabled Black woman, and I'm not exceptional in that. I'm part of a much larger group. And though we're all different in a whole host of ways, one of the things that unites us is looking for ourselves in the media that we consume. I hope that when this conference is over and you go back to consuming media, you ask yourself if it's really as diverse as it might have seemed to you before. And for those of you that create media, I hope that you will open the door for people like me to be part of your creative teams so that we can become more visible. Thanks.

[applause]