CW: Ableism, Mental Illness
I am afraid to write this post.
I’ve been thinking these things for a long time, years even. I want to talk about them. And I’m afraid. I’m afraid because the Publishing and Literary community is small, small, small. Even when you include self-publishing and small presses, it’s tiny. You’re always running into the same people. And it’s easy to be seen as contentious, a problem, for your reputation to be damaged. Which, in turn, damages your career. I’m afraid because the things on my mind are hard to talk about, and because I am certain there will be people out there keen to invalidate my concerns. It’s difficult not to invalidate my own concerns in this arena, tell myself I’m not doing it right or not trying hard enough. And as much as I tell myself these are messages I’ve internalized because of ableism, the questions remain: Am I whining? Am I seeing a problem that doesn’t exist and using it to rationalize my lack of success? Am I simply “not good enough?”
I’m afraid to write this post, and I’m going to write it anyway.
Last night I stumbled on this article on Everyday Feminism. It’s an article about “Inspiration Porn,” which is also known sometimes as “Disability Porn,” and why it’s harmful to people with disabilities. If you’re unfamiliar with the term, “Inspiration Porn” is a class of memes that feature an image of a person with a disability–a double amputee with prosthetic legs, a person in a wheelchair, etc.–accomplishing something popularly assumed to be impossible for a person with a disability. Crossing the finish line at a marathon, accepting an honors diploma. Like that. The text points out the disability: “So and so lost both legs in a tragic accident,” and lauds the achievement: “and went on to place in the top five in the Boston Marathon!” The meme closes with some variation of “What’s your excuse for not achieving stuff?”
You’ve seen these memes. I’m sure you have. If you want to understand more about why they hurt people with disabilities, read the article.
The information and analysis weren’t new to me. I read a lot of these types of articles. I read them not to learn about topics I have no knowledge of (although I do often gain new knowledge, and I always want to hear about other people’s experiences). I read them for validation, to see how others cope with problems I face, to get some reassurance that the problems are real, not just figments of my imagination. With this article, I got more than I bargained for when, toward the end, the author started to rant about ableism in literary circles (again, read the article). This is a subject near and dear to my heart, and I have never before heard/seen someone address it in public. If it gets talked about at all, it’s in whispers and private messages. Because, as I’ve already said, the publishing industry is small, and it’s easy to be labeled a malcontent and a malingerer if you challenge the way things are done.
Hey, time for me to give my disability cred! It sucks that I don’t feel like I can continue this post without doing so–and I think that’s probably another kind of ableism–but I do feel that way, so here it is: Chronic Migraine Disorder. Complex PTSD. Social Anxiety Disorder. General Anxiety Disorder. Bipolar with Chronic Depression. All these are currently “managed” as well as is possible for me. Please note that “managed” means I can “function” and/or appear as “normal” to a certain degree about three-quarters of the time as long as I am diligent about self-care. And there are still days when one or the other of these disorders flares without warning, and all I can do is initiate the routines that keep me from jumping in front of a train and wait it out. (N. B. If you think the “jumping in front of a train” part is hyperbole, IT ISN’T.)
Let me also take time to point out that all the above disabilities are INVISIBLE. I don’t need mobility aids. (Actually, aside from the migraines, my body is in pretty decent shape.) I’m not deformed–unless you think fat is a deformity, and some do. I am not missing any limbs. I do not match the picture of “disability” most able people carry in their heads. My disabilities are nonetheless real, and they have a profound effect on the way I live my life.
Good gods, if I could only communicate to you how difficult it was to say “my disabilities are real,” and how loudly the voices in my head rose in protest. When I talk/write about this stuff, the struggle to articulate is constant. I’m sure everyone has their moments of self doubt. I am equally sure that if everyone had my brain process, nothing would get done anywhere, ever.
So, publishing. Over the last year or so, as I’ve said elsewhere, the publishing industry has expressed an interest in being more inclusive and putting out more “diverse” books–meaning books written from perspectives and including characters other than the usual white, cis, het, able-bodied, neurotypical, standard-religion-having ones that comprise 90% of what gets published (no, this isn’t a hard percentage). Agent and editor wish lists solicit submissions from People of Color, LGBTQ+ people, and disabled people, and look for stories featuring the same. This is great. I support it! I can’t be enthusiastic enough about the trend!
And yet. Speaking as a person with mental illness–several of them–I have this to say: Despite the inclusive words, the actual practices of the traditional publishing industry promote ableism in that they require people with disabilities to jump through hoops they are not capable of jumping through, and often fault people with disabilities for not performing “professional writer” to an able standard. I’ve believed for years that my problems with the practices of traditional publishing were all on me, signs of my intractability and unwillingness to comply with the “norm,” maybe born out of a weak will and lack of dedication to succeeding in my chosen profession, or maybe from a flawed personality and sheer orneriness. Reading the article last night was literally the first time I allowed myself to believe, “Hey, maybe this isn’t just me. Maybe the flaw is in the system.” I’d thought it before, but I always dismissed the idea.
Here are four ways the publishing industry promotes ableism. For the purposes of this list, I focus on invisible disability and mental illness, because that’s where my personal experience is. Also, there may be other ways the industry fails to accommodate disabilities. These are the first that came to my mind.
#1: Reliance on Social Interaction/Networking
How many times have I read the acknowledgments page in a book by a new author and seen some variation on the words: “Thanks to (INSERT WELL-KNOWN AUTHOR) who encouraged me and recommended my manuscript to his agent”? Or seen (traditionally) published authors suggest that newcomers “get to know” people in the industry, either in person at conferences or on social media? Enough that the message sticks. It’s not a bad message, in and of itself. All businesses rely to some extent on networking, because human beings are social animals. A huge number of people seem, for reasons incomprehensible to me, to want to be authors, so making a personal connection with people in the industry who might be of use in advancing your career is almost a no-brainer. You want agents and editors to remember you.
The reason this is ableist: For people with anxiety disorders, this advice is akin to recommending an extended vacation in the hell of their choice. This goes double if the person is a natural introvert. Some people find it easy to make connections and interact with others. Some find it difficult. For people with anxiety disorders, it’s nearly impossible. Even in a managed state, my daily anxiety level is so high that I almost never leave the house outside of the company of my husband or another person I trust implicitly. I’ve been to one writing conference in my life–and, by the way, suggesting people attend conferences is also classist–and it was so overwhelming I had regularly to retreat to my room to recoup. I managed to engage a few other writers, but I cannot imagine trying to pitch my work in that kind of environment. Putting your heart and soul project on display is hard enough for able people. For people with anxiety disorders, if getting through the meeting is possible, recovering might require days.
I try to perform normative body language, but I know my anxiety often makes me appear stand-offish. I don’t make eye contact. I turn away and cross my arms over my chest. I fidget. All of these are apt to make a negative impression on an able person.
Connecting on social media is somewhat easier, but not much. Frankly, I am exceedingly uncomfortable with all but a small circle of people. Every tweet to someone outside that circle is agony. If the person responds dismissively, or worse, not at all, I am convinced of my utter worthlessness and stupidity. Most of the time, making an overture isn’t worth the expenditure of energy. This isn’t something I can control. It’s the way my brain works. I can tell myself over and over that nothing is personal, blah, blah, blah. And it helps. But it doesn’t alter the process.
For a person with an anxiety disorder, every social interaction requires weighing possible benefit against probable distress and need to recover. Publishing’s focus on social interactions doesn’t take this into account.
#2: The Query Process
I’m pretty sure everyone hates querying and faces it with some mixture of fear and resignation. Most of the writers I know manage to do it anyway. Even I’ve managed to do it. It’s THE WAY THINGS ARE DONE. So how is it ableist?
Okay, I’m going to come out and say that it’s my belief that the whole idea is fucked up beyond belief. I get the need in the industry for some kind of filtering process. I really do. The slush pile is essentially a thing of the past. Big publishers don’t take unagented submissions, or take them very rarely. Agents read submissions in their “off” hours, because they spend their days working for their clients–which is proper. And it’s not uncommon for an agent to get several hundred query submissions in a day. I get that. And I still believe that judging a 100,000-word manuscript by what a writer is able to convey in a 250-word query is incredibly problematic, and points to what I see as flaws in the industry as a whole.
The ability to write an effective query isn’t one that I think comes naturally to many people, and acquiring the ability isn’t easy. You can attend workshops, both on and off line, and these are difficult for people with mental health disabilities for many of the same reasons I cited in point #1. Some websites devoted to writing have forums where you can post your query and get critique. My experience with those is that they are NOT a good place for people with anxiety and trauma. I frequented several when I first started trying to understand the query process, and found that constructive feedback was rare, while demeaning and downright abusive critique abounded.
I have Complex PTSD from abuse and trauma sustained over a long period of time. I know most of my triggers, but that doesn’t stop them from being activated. For me, the entire query process triggered me to a point where I stopped writing at all because I could not perform this necessary task, and if I couldn’t learn it, writing was pointless. I had severe anxiety attacks even trying to learn the skill. Nothing about it is accessible to me. I did eventually learn it, but I had to take the lessons in fifteen-minute doses over the course of several years. If you want to know what that was like for me, imagine choosing to be flayed alive, not just once, but over and over for years, with no expectation of gaining anything by it and no control over the process. The first time isn’t so bad. But with each successive flaying, the terror and the anticipation increases because you know what to expect and how much it’s going to hurt. Yet you force yourself to do it anyway, time and time again. As soon as you heal enough to stand without pain, you invite flaying one more time.
That’s the closest I can come, and it hardly encompasses the intensity of the terror and the determination necessary. Bottom line: The query process isn’t mental health-friendly. It needs to be changed to be more accessible to people with anxiety and trauma if they ever want to see people like themselves represented in print.
#3: Standards of “Professionalism” are Geared Toward the Able and Neurotypical
This one encompasses a lot of different things, like the ability to meet deadlines and engage in marketing activities like book tours, as well as expectations of acceptable ways of performing “up and coming author.”
Most writers I know are writing all the time, on something or other. When they finish one manuscript, they start another. They go back and forth between projects, rotating writing, revising, editing, and querying. Most of the writers I know also have “day” jobs (I’m including “full time mom” in this category). Having a paying job to support your writing is a necessity for all but a few, because most books don’t earn out their advances. When you have a contract, you have to keep your deadlines. There’s some wiggle room in these, but once a book is on the publisher’s schedule, things can get pretty tight. If you’re lucky enough to have an extended contract, you’re expected to turn out a certain number of books within a certain time frame to fulfill your contractual obligations (I remember one popular cozy writer mentioning her relief that her new contract allowed her eighteen months between books, rather than requiring a book every year.) Some writers juggle multiple contracts at once.
After your book is published, you’re expected to engage in promoting it. This might mean doing interviews, writing guest articles, going on a book tour, attending conferences to represent your publisher, and more. All of it is part of the job. If industry professionals doubt your ability to keep up, your chances of landing a deal go way down. To quote the article that inspired this post:
“Agents have actually said things to me like, ‘I don’t know if you can handle having a book’ or ‘I don’t know if you can promote a book.’ They mean because of my epilepsy, bipolar, and PTSD.”
I mentioned earlier in this post the need to be diligent about self care. I have to maintain constant awareness of my physical and mental states. If they look dicey, say, if I recognize migraine prodrome or aura, or if my thought processes go haywire, or if a bodily sensation warns me of a change in brain chemistry that heralds a mood dip, I HAVE TO do the routines I have learned will keep me on an even keel. This might look like eating a lot of protein, or it might look like retreating from the world and watching Netflix for two days. If I get a migraine or go into a depressive cycle anyway, all bets are off. I am non-functional at these times. Anything that was on my schedule gets canceled, no matter how much I wanted to do it or how important it was. My health comes first.
This isn’t appealing to the people whose job it will be to book your speaking engagements and need some assurance that you will be able to show up. They’re likely to want to represent a client who is less high maintenance and more dependable. And while that’s understandable, it’s also ableist as hell.
My need to be diligent about self care also makes the very idea of deadlines problematic. Sometimes I can write and sometimes I can’t. That’s just the way it is with my brain. It’s not because I’m not dedicated or I don’t want to do the work. I ALWAYS want to be writing. Doesn’t mean I can. When my brain chemistry is on a high, I can churn out two or three full length novels in as many months. When it’s not, I might go months when getting out of bed is the most I can manage in a day. Writing is about as possible for me as walking on the surface of the sun. In between the highs and lows, I have to pace myself. Even with medication, my capacity to stay on an even keel mental health-wise is limited. I am easily overwhelmed. Pushing too hard because of a deadline or an expectation is an unfortunate part of my trauma. When it gets activated, I invariably plunge into a depressed cycle. So there’s no question of “pushing through” or forcing myself to produce X number of words when the energy isn’t there. It isn’t something I can do and maintain good mental health.
My brain chemistry means I can’t perform “professional writer” to the expected standard. As a consequence, my opportunities in publishing are limited unless someone is willing to make accommodations.
#4: Prominent Voices in Publishing are Able Bodied and Neurotypical
This is the one that bothers me most, to tell the truth. I have read about one or two conference panels where authors talked about their struggles with anxiety and depression, and I follow several authors who speak openly about it on social media. (It occurs to me just now that the latter group rarely, if ever, mention how their anxiety and depression impact their careers or state whether they need accommodation, or what it looks like.) However, the most prominent voices by far are those of the able, and those able people are the ones who most often engage in telling the rest of us “how to do it.” The ones saying “write every day” and “don’t make excuses” and “the only way to write is by writing,” and other things they can say and believe are true because their brain chemistries aren’t fucked up. I’m older than most of them, and I know my process, thank you. And I STILL agonize over it when my brain tells me it’s not a good time to write. I ask myself constantly whether I’m trying hard enough, or whether I’m avoiding writing because it’s hard, or whether I’m being lazy WHEN I KNOW THAT ISN’T THE CASE. The messages we hear from able and neurotypical writers damage those of us who are neither. They promote the view that there’s only one way to succeed, and it’s inaccessible. And they reinforce the idea that we’re flawed, that the problem is in US rather than the system.
A frustrating addition is, I know people with mental illnesses and invisible disabilities who have managed to jump through the hoops and get representation and traditional contracts, enough that you can point to them as evidence there isn’t a problem with ableism in the industry, not at all. It makes me question my experience even more.
Right now, as I try to wrap up this blog post, a number of thoughts are running through my head. The top layer is dismissing the entire conversation as flawed, and therefore worthless. Everyone gets overwhelmed. Everyone is nervous making their work public and afraid of rejection. I have no reason to believe I feel these things more intensely than anyone else. No reason, except that I believe the professionals who have diagnosed me with several mental illnesses.
(Aside: It’s the feeling of being overwhelmed, of not measuring up, that’s worst for me. I’m not actually nervous about putting my work out, because I believe in my work. It’s myself I find wanting, and my fear is that my work might meet rejection because of personal qualities or deficiencies everyone sees but no one will tell me about. And because my various disabilities influence my interactions and behaviors the way they do, I see this as a very real possibility.)
When an entire society and its business models are built on mental and physical ability, it’s almost impossible to address the issue in a single industry. Everyone expects workers to be on time, to follow through, to be presentable, not to take too many sick days. Not everyone is suited to every, or any, job. Unfortunately, in the US in particular, personal worth is most often viewed through the lens of being able to fit into corporate culture and “earn a living.” There is almost no flexibility for people who don’t fit this mold. In fact, most often “flexibility” is something required from workers, who need to be available to meet the needs of employers. I’ve rarely seen it the other way around.
Not everyone who writes is going to succeed at it, whether able or not. It’s a tough and highly competitive industry, and no one is entitled to a place on the bestseller lists, or seeing print at all. Still, there are a few things traditional publishers could do to support people with disabilities. First and foremost, publishers could devote more time to on the ground marketing of more than their top authors. Several years ago, I attended a panel on marketing strategies, where all the panelists were from what used to be termed the “mid-list” — authors who sell steadily, but don’t have the clout of a Stephen King or a Nicholas Sparks. Every author on that panel stressed that their publishers left marketing up to them. In fact, a few related that when they inquired about marketing plans, representatives of their publishers actually laughed. This is not okay. It’s not okay in any case, and for people with disabilities like mine, it’s abhorrent. In most instances, the worst part of social anxiety is making first contact. For example, I can show up to an interview or a reading. I can’t set them up. I can’t cold call booksellers and ask them to take a look at my work and consider stocking it. This is something that publishers should do for everyone far more aggressively than they do at present.
Another thing that would help is simple recognition that not everyone functions the same way. Some authors can manage back-to-back engagements. Some can’t. Some can spend twelve hours at a time “on form,” interacting with the public at a convention. Some can’t. Offer of a contract should not presuppose the former. In fact, agents and editors shouldn’t even be considering a potential client’s stamina, or whether they can “handle” having a book. The only reason a disabled person wouldn’t be able to “handle” it is that they might be required to fit into an impossible model. Instead of wondering whether we can “handle” it, a better use of energy would be adjusting expectations and working out ways “handling” it would be possible. Frankly, wondering “if” rather than asking “how” is insulting. Disabled people know what we can handle. If we didn’t think we could handle a situation with proper accommodation, we wouldn’t try it on. Many people in publishing do have an intellectual awareness that people are different. More work needs to be done, to put this intellectual awareness into practice.
The query process could be made more accessible with a very simple adjustment: Stop requiring that queries come from authors. I’ve often joked with other writing friends with anxiety disorders that “I need an agent to get me an agent!” I know people think that they can better determine a writer’s skill if they write their own queries, and I believe this is a flawed assumption. Determine the quality of the writing from sample pages. Let people who are able to engage in marketing do the marketing. I wouldn’t be shocked to find out that some writers privileged enough to have assistants already delegate this task, because everyone hates it. All kinds of professionals delegate, dictate, and/or cooperate on tedious business correspondence. Why shouldn’t writers be able to?
Because of the progress that’s been made in digital publishing, and the lessening of stigma against self published authors, people with disabilities may choose an independent path rather than a traditional one. I did, and I was glad of the opportunity to do so. I also know that self publishing entails many of the same problems as far as networking and marketing. So it’s not a perfect solution.
In speaking of the ways ableism in publishing affects me personally, I haven’t even touched on the ways it limits opportunities for people with other chronic and invisible illnesses. People with lupus, fibromyalgia, chronic fatigue, schizophrenia, and all the rest have the same or greater need to practice self care. Many do not have my “advantage” of qualifying for government-sponsored disability support, or an understanding partner willing to undertake the bulk of the bread-winning, and have even more limited resources and energy to devote to pursuing writing on a professional level. And they also have stories. I see a great many people in publishing expressing a wish for manuscripts dealing with recovery rather than onset, or simply including disabled characters because disabilities exist. But I have to wonder, when being in recovery means sleeping for days and numerous doctor visits without clear narrative resolution and more tedium than excitement, how would those stories be received? And if the industry doesn’t address its ableist bias, will disabled people believe it’s a good use of their time and energy to write them?
I don’t think so.
The Shadow Sanctuary 