I Am Not Anyone’s Metaphor
A&U’s Raymond Luczak talks with writer Nicola Griffith about HIV, disability & community

Photos by Jennifer Durham

Nicola Griffith is one of those writers you cannot simply ignore. In fact, her first novel Ammonite won two major awards (James Tiptree, Jr. Award and Lambda Literary Award) and was nominated for a few more. Since then she’s had six more novels published, but after having read her latest novel So Lucky, I am kicking myself for not reading her earlier. It had been pure chance when I came across a copy of So Lucky in a bookstore and saw on the back cover that its main character, Mara, was the executive director of an AIDS foundation. Hardly anyone writes about AIDS in fiction, so I had to ask Nicola a few questions about her absolutely terrific book.

Raymond Luczak: What prompted you to write So Lucky?
Nicola Griffith: So Lucky is a short novel set in contemporary Atlanta. It’s the story of Mara, a woman on top of her world, who’s never met a challenge she couldn’t deal with—until, in the space of a single week, she is diagnosed with MS, divorced by her wife, and loses her job. It’s a thriller of the body—a changing body, and how bodily change, in turn, changes our understanding of life, the universe, and our place in it.

Mara doesn’t die, and isn’t cured. She ends up figuring out a lot of stuff, falling in love again, making idiotic decisions, making money—and fighting monsters, human and otherwise. This isn’t a sad, interior, angsty book. A lot happens, a lot changes, but Mara is always doing: always acting and coping and learning.

I wanted to read a story of someone like me who isn’t killed, or cured, and isn’t a poor sad cripple or a tragic example. I wanted a counter-narrative to the ableist über-story, the lies about disability we’ve all been fed since birth. Mara learns to break free from the constraints of the old story so she can build her own. It’s about building community. Because community is hope, community is life. And community is how you keep the monsters at bay.

Most contemporary novels today avoid talking directly about HIV and/or AIDS, partly because it’s no longer the death sentence that it used to be back in the 1990s. However, it’s interesting to note that the main character in So Lucky is the executive director of an AIDS foundation. Why did you choose that profession for Mara? If Mara had a different profession, do you think the book would’ve been different?
I was a caseworker at a street drugs agency in the north of England when first men who had sex with men and then IV drug users started to die. I saw the discrimination against those living (and, at the time, dying) with HIV and AIDS and how some just curled up and died inside before they ever died physically. And then I witnessed a group of people from every walk of life, every socioeconomic status, come together and pool their experience—political, financial, medical; marketing and publicity; community building and activism; art and lobbying—into a truly astounding, fierce movement that saved lives and changed the world.

It’s that experience Mara has: that illness and disability is not the end of pride and individual worth.

Essentially, So Lucky is about a woman being diagnosed with MS and becoming more and more physically impaired and finding that she’s suddenly and shockingly (to her) being dismissed by the world. Then she realizes, to her horror, that she’s also been dismissing herself. She’s absorbed the ableist narrative, all the bullshit, and internalized it. I wanted to tell the story of how it feels to be nondisabled one year, and, by the next, not only be disabled but begin to identify as a crip: how that happens, how it feels, what it takes to break out of that internalized, ableist cage, and what it all means. Her experience of working with PLWHA really helped speed that process up, which is what allowed the entire story to unfurl in a single year.

It’s interesting that you’ve chosen to write So Lucky rather like a thriller in some parts. Most people would’ve never thought to associate a woman with MS being the main character in a thriller involving a mysterious stalker. Whatever made you go in that direction?
As a reader, if I read my description of So Lucky, above, on a book cover I might not pick it up. It sounds claustrophobic: all internal angst rather than external event. I like to read and to write books in which characters do things, not just feel things, and whose bodies are sites of delight rather than difficulty.

So I included a thriller element, and plot involving nonprofits and how they work—their hierarchies and politics. Plus a bit of love and sex, and, of course, murder and monsters. (The first word of the book is It, and It is a monster.) The book is funny, too—at least I read the audiobook that way.

The thriller element is a way to gradually externalize Mara’s fears and so avoid the cliché that women, women going through a divorce especially, chronically ill women even more so, and disabled women most of all, spend our time marinating in misery; I wanted an active character, a character with agency. Someone who takes action rather than stews in their own anxiety.

I’m sure this is such a tired question, but just how autobiographical is Mara’s dealing with MS? Or do you feel that such questions, when asked by the media, are too personal to answer?
If this were a straight literary interview the question would piss me off. To label a novel “autobiographical” is to suggest it is not art, not a work of creativity but of transcription. And the farther the author is from the Norm—that is, straight white nondisabled male—the more likely an author’s agency as an artist is to be questioned. For example, from a straight white male-identified author like Karl Ove Knausgaard, autobiographical fiction is Art. From a female-identified author, it is merely a transcription of real life with no creativity involved: Oh, she wrote it, but it’s not really art because it’s the story of her life. She just, y’know, transcribed what was actually happening. In How to Suppress Women’s Writing, Joanna Russ lays out eleven methods to belittle the work of women (and, I would argue, that of members of other traditionally marginalized groups). Labeling fiction as “autobiographical” could be assigned to either Denial of Agency or Pollution of Agency. (I write about this in a brief essay, “How ableism affects a book review”on my blog.)

In this context, though—addressing arts-oriented readers living with HIV and AIDS: people, like me, with skin in the great game of ableism—this question is fine!

A lot of Mara’s experience mirrors my own, but how she responds is quite different. Similarities first: I am an immigrant from the U.K., living in Atlanta (I lived there five years in the late eighties/early nineties). I’m queer, and like Mara was diagnosed with MS in my early thirties (as a huge proportion of people with MS are). Like me, Mara is very much a creature of the body, very physically active, and a student of martial arts. I think that’s the extent of the similarities, though.

The list of differences is longer. Mara has a degree, begins the book legally married, and is gainfully employed. That’s quite different to my experience. Apart from a part-time job I held briefly in the U.K. working at a street drug agency, I earned what money I could from doing things like teaching women’s self-defense, being in a band, and a variety of…let’s just say entrepreneurial activities that wouldn’t look good on a CV. I was very much part of the underclass until I moved to this country, at which point—because of legal scrutiny from the INS—everything in my life had to be very above-board and connected to writing.

It’s partly the era—the twenty-teens are pretty different from the nineties in terms of attitudes to and medical treatments for MS—but Mara’s battles are different from mine. And her temperament is nothing like mine: she’s much more brittle than I ever was, and anger is much more a feature of her personality. She’s also a bit of a control freak, which I chose deliberately so that becoming disabled—being treated as less and unable to control her destiny—is particularly difficult.

What kinds of thoughts did you have at the time about disability literature while writing So Lucky?
I wrote the whole first draft in a white-hot fury over the three-week holiday break 2016–2017 so during the actual writing I didn’t really think at all. But I had been thinking about it for twenty years, so when it came time to write it was just…there; I’d already done most of the work.

In those twenty years before I actually wrote it, though, I had All the Thoughts, and, yes, So Lucky holds just about every one I could cram in without distorting the story. There isn’t room to write them all here, but you can read about the driving force—the urgent need for representation, for seeing ourselves mirrored on page and screen—in the New York Times Opinion piece I wrote “Rewriting the Old Disability Script,” which came out right at the end of 2018.

Any parting thoughts on AIDS and/or disability as a metaphor would be most appreciated.
More and more I’m seeing the same military metaphors used in the treatment of MS as those long in use for cancer and AIDS—fighting the disease, aggressive marshalling of forces, immune defense, etc.—but MS is not metaphorized to anything like the extent of HIV/AIDS. I’ve never seen MS characterized as a plague, for example, or invasion, probably because it’s not generally regarded as infectious. The metaphors of AIDS, it seems to me, are largely built on fear and disgust—with a vast moral dimension—whereas those for MS are based on pity. Both are distancing and Othering; both are dangerous.

I get so very, very tired of disabled characters in books and film being treated as nothing but a narrative prosthesis: we die at the end so that the status quo can be restored and all those nice nondisabled people can get back to their real lives without having crips cluttering up the place. And I am so very done with novelists and screenwriters using disability as a signifier of evil.

I can’t speak for anyone else but I am not anyone’s metaphor. I refuse to be anyone’s educational opportunity and I will not be an inspirational example. To those considering such a foolish choice I would say: You may not pity me nor use me to explore your own empathy; you have no fucking idea what I feel and think. And, oh, do not—do not, ever—use disability as an insult or I will come for you….


Links to Nicola’s essays can be found online at nicolagriffith.com. Better yet, pick up a copy of So Lucky!


Raymond Luczak is the author and editor of over twenty books. His latest titles are The Kinda Fella I Am (Reclamation Press), A Babble of Objects (Fomite Press), and The Last Deaf Club in America (Handtype Press). Books recently published in 2019 include Flannelwood (Red Hen Press) and Lovejets: Queer Male Poets on 200 Years of Walt Whitman (Squares & Rebels). He was previously the editor of the queer fiction journals Jonathan and Callisto. A ten-time Pushcart Prize nominee, he lives in Minneapolis, Minnesota. Visit his website at: raymondluczak.com.