This month we're asking our autistic community members What Do You Want? What Do You Need? We'll be featuring their answers all April long, right here. Today we're having a conversation with autistic advocate Dani Alexis. Please read, listen, and share.
I'm currently a graduate student in English at Western Michigan University, researching what I'm calling broadly "autism literature, narrative, and discourse." So far, that has meant everything from analyzing the poetic elements of literature by autistic writers to looking at the terrible mismatch between what we say publicly about ourselves and what is said publicly about us. When I'm not at school, I'm usually enjoying time with my husband and our two very spoiled cats and blogging at danialexis.net.
What are some things that make you happy? Why?
Figure skating, which feels like complete mental and physical freedom for me. I'm much more graceful on skates than on "land." While I'm skating, I can't think about anything else, so it's also a great mental and emotional "break" in the middle of all my academic work. I also love spending time in the library: the quiet between the stacks and the smell of books is the safest place I know.
What are some things you avoid whenever possible? Why?
Talking on the telephone, especially with strangers. If I don't recognize the number or I'm not expecting a call, I don't answer. I do the same thing with the doorbell: if I'm not expecting a visitor or a package, I'm not here. I also prefer not to drive -- luckily, my husband enjoys driving, so I can frequently avoid it.
What features does your ideal living space have, and why?
My ideal living space is a university library without the public. I find the smell of the books and their visual and tactile weight very comforting. Most libraries have a great deal of natural light, which I prefer. And there is absolutely no clutter -- everything is (ideally) either organized where it belongs or accounted for in the system. Above all, it's quiet -- not only am I not expected to talk, I am expected to not-talk.
What are your favorite books, movies, and/or TV shows?
Books: Barbara Kingsolver's The Bean Trees, Minrose Gwin's Wishing for Snow and The Queen of Palmyra, Bonnie Jo Campbell's Once Upon a River, Anne Carson's Autobiography of Red ... I could list favorite books forever. I also collect old Girl Scout handbooks; my prized possession is a 1916 edition of the first published handbook, How Girls Can Serve Their Country.
Movies: Compared to most people I know, I have seen almost no films. I love Gone With the Wind for its extraordinary visuals (and in spite of its problematic storyline) and Wit for Emma Thompson's remarkable performance.
TV Shows: I'm currently hooked on Agents of S.H.I.E.L.D. I will never say no to a marathon of Star Trek or The Simpsons.
What autistic experiences would you like to see more of, when it comes to storytelling efforts like books, movies, and/or TV shows?
I'd like to see more characters who are canonically autistic, but who aren't turned into a plot device or an afterschool special. I'd especially love to see more (realistic) portrayals of autistic women and autistic people with multiple disabilities.
What are some things you'd like the media and other people to stop saying about autistic people?
I would be thrilled never to hear the words "high-functioning" and "low-functioning" ever again, especially when they are based on someone's ability to produce "normal" speech (spoken, in complete sentences, fits the prevailing neurotypical view of what people are "supposed" to say in the situation, etc). This is language being used as a weapon against autistic people in multiple ways. First, it cuts us all out of the conversation on autism by asserting that autistic people who don't speak "normally" are too "low-functioning" to know what they need and that autistic people who do speak "normally" are too "high-functioning" to be having a real autistic experience in the first place -- both of which are simply wrong. Second, it presumes there is a "normal" or "ideal" form of communication, and that alternate forms are either marks of a pathology or not communication at all.
In my research, I've been particularly captivated by Gayatri Chakravorty Spivak's question about marginalized groups, "Can the subaltern speak?" This seems to me to be a particularly compelling question for autistic people because so much of the discussion around our personhood is predicated on assumptions, not only about our ability to participate (which is what Spivak means by "speak"), but about our ability to actually speak.
If you could change one thing to make the world more friendly to autistic people, what would it be?
I'd normalize a much broader range of communicative forms (speech, writing, typing, sign, pictures, etc.) and content (logical, poetic, etc.) -- but I'd encourage listening above all.