Before You Bemoan Trigger Warnings and Coddled Youth…

Today, I got triggered because my jeans were too tight.

“Oh, for fuck’s sake,” you may be thinking. “That’s ridiculous. Aren’t you taking this whole concept a bit too far?”

Well, yes and no. Yes, it’s ridiculous. Even I think it’s ridiculous. And no, I’m not taking it too far.

See, I have profound issues with my body (if you’ve read any of my blog posts, you already know this, or at least suspect it). When I was 17, I almost died of anorexia nervosa. I struggled with a severe eating disorder for years after, and have never felt entirely comfortable in my body. I’ve put on a large amount of weight in the past five years or so, and everything that makes me notice it brings all those issues to the surface. Clothes that no longer fit right. The sense of being compressed into too small a space, a space I once inhabited with (relative) ease.

This is what it feels like: I can’t breathe, and I don’t know whether it’s from the tightness of my clothes or something in my head, a stress response. My heart races. My body starts to shake. All the horrible things I’ve ever thought about my body, all the horrible things anyone has ever said about my body, fill my mind, pushing out everything else. I’m terrified to move. I know beyond a shadow of a doubt that something is happening over which I have no control. The idea of control in itself is vague and illusory. I feel helpless. I want to run and hide, or fight, but I’m incapable of neither. There’s no safety wherever I turn.

All from squeezing myself into a pair of too-small jeans.

Breathe.

I have a lot of triggers like that: triggers other people might consider “stupid” or trivial. I haven’t actually been through a lot of things that were life-threatening in the moment, and the ones I have experienced pale beside earlier sustained trauma. Yes, it was terrifying in the moment being raped. But in all honestly, it didn’t mark me the way it marks other people. I got over it fairly quickly. I can read graphic descriptions of rape and other physical violence. I can even see them on TV or in movies, though I don’t like them. It’s the little stuff that gets to me, because my trauma was day-to-day over a long period of time. Everyday things other people don’t notice are loaded in ways that are hard to explain. Tight clothes. The idea of exercise. I have a hard time with the mere word, “exercise.” Playing music. Trying to make conversation. Leaving my house, which is mostly safe. People not being honest about what they’re feeling–I guess that may be more common than I suppose. Hunger, which I experience several times a day. Imagine having a fight or flight response every time you get hungry. 

My point is, no one can know what’s going to trigger another person. You can’t say, “Oh, that. I don’t have any trouble with that, so you shouldn’t either.” You can’t say, “Your desire to be safe and informed in this area is a symptom you need to pull up your panties and grow up. The world has bad stuff in it; get over it.” Triggers don’t work that way. Instead of judging by your own experience, maybe try showing some compassion and trying to understand.

I think most people want things to be easy and to fall into neat categories: THIS is something that could be triggering and THIS isn’t. THIS is normal human experience; THIS is beyond the pale. But mental health issues don’t work that way at all. Definitions change all the time as understanding changes. In my lifetime alone, homosexuality was removed from the DSM; I was hospitalized with men whose only “illness” was “being gay,” and mental health professionals didn’t begin to address the results of the ways they were treated because of it. In my lifetime, Manic Depressive Psychosis has become Bipolar Disorder, has become Bipolar Spectrum Disorder. Most people still view PTSD through a single lens. The idea of CPTSD is catching on, but it’s still not an “official” diagnosis.

So, you know, shut up about other people’s triggers. I know it’s difficult to build a standard policy on shifting sand, but that’s not our problem.

That’s all.

Illness Isn’t A Performance

I’m tired of performing my illness.

If you have a chronic illness or a disability (physical or mental) you may be nodding right now. If you’re able bodied and neurotypical, you may be puzzled. What the hell does it mean to “Perform an Illness?”

Maybe I should have led with, “I’m tired of the need to perform illness.” Because it’s not just me. It seems like this past week I’ve seen an unusual number of articles, blog posts, and tweets about performing illness, from this discussion of what constitutes a “real” migraine to my friend being told she doesn’t “Look Sick” (a classic), to a couple of people writing about how tired they are of curating media presence in order to appear to be “doing” their illness “right.”

I’m not the first person to write on this topic. I have no doubt I will not be the last. If you’re here, you probably have some interest in what I have to say, or are at least curious. So here’s my 2 p.

First off, for latecomers to the discussion:  What does it mean to “perform” an illness?

Simply put, performing an illness is aligning the way you present as a chronically ill person with the expectations of somebody who is not yourself. It can also be aligning your presentation to conform to the expectations of a group you’re part of. (I’ll be addressing this eventually, probably in a different blog post.) What your performance looks like depends on context, and it may be affected by things like the identity of the individual or group as well as your own reasons for performing. It might look like moaning a little when you’re enduring a migraine so your partner understands they can’t expect you to cook dinner. Even people whose illnesses aren’t chronic may do it, exaggerating hoarseness and sniffles over the phone so the boss believes it when they call in sick.

The need to perform illness always stems from ableism, whether internal or external. Part of any privilege is the tendency of people with more power to define people with less. Thus, you get white people defining what it means to be Black, thin people defining what it means to be fat, and able people defining what it means to be sick and/or disabled. These definitions are invariably rooted in stereotypes, because they’re created by people who are outside the communities they presume to address.

Applying stereotypes to living, breathing human beings is always damaging, but a unique aspect of the stereotypes about illness is that ill and disabled people can sometimes find benefit in “playing to” them. The stereotype of, for example, fat people as lazy, overindulgent, ignorant of the benefits of “healthy” food, and a drain on resources is overwhelmingly negative. A fat person can alleviate some of the negativity of the stereotype by “playing to” a slightly different one, the “Good Fatty,” i.e., a fat person actively engaged in not being fat through exercise, adopting “healthy” eating habits, undergoing surgery, or a combination. In the case of the ill or disabled person, performing illness to suit preconceived notions of what it looks like usually has results that appear positive. You can gain sympathy, for example, or simply get a rest from having the validity of your illness questioned. The flip side is that failing to perform your illness in a way that fits the stereotype can result in negative consequences. A person who lays aside a needed mobility aid for a short period of time may encounter hateful judgments about whether or not they’re pretending to be ill. Likewise, a person needing accommodation in the workplace may be deprived of it if they don’t need it every single time, or a person with a mental illness may be accused of faking it unless they consistently act irrational, depressed, or whatever other way is considered normative for the illness.

To make matters worse, even people who should know better, like doctors and advocates, can practice ableism when they adhere dogmatically to diagnostic criteria. “Official” designations in the DSM and other resources might be helpful in determining what code will persuade an insurance company to approve treatment (and the need to gain approval from people whose main concern is cost rather than health comes with its own set of problems). However, when dealing with real people, it’s important to remember the experience of illness rarely goes by the book. Some symptoms may be common; others less so. Some diseases manifest differently in different people, or have different forms. We don’t know everything there is to know about illness, whether physical or mental. New syndromes are being identified all the time. The best way to determine whether a person is sick and/or disabled is to listen to that person. Of course, this often doesn’t happen. The Western world has an almost pathological fear of being taken advantage of, of people getting things they “don’t deserve,” and this plays out in its treatment of sick and disabled people.

Here’s an example from my personal experience: A number of years back, during a major depressive episode, it occurred to me that I suffered a real mental illness that prevented me from engaging in the world in a lot of ways, and I might qualify for disability support.

I need to pause here to say that writing the last sentence triggered a LOT of anger in me, for a LOT of reasons. I started experiencing symptoms of depression and bipolar disorder in early adolescence. I developed an eating disorder so severe I almost died from it, and doctors told my parents at least once that I know of that I had a mental illness so severe I “would never be able to take care of” myself [whatever that meant]. Yet the reality of my illness didn’t sink in until I was past forty. I don’t think this is due to the illness, itself. I knew at a young age that something odd was going on in my brain and I begged for treatment. But Western culture is so ableist that it actively encourages sick people to ignore their experience when it prevents them from conforming to expectations. You can see this in every television commercial for cold medicine where a miserable, coughing, sneezing, feverish person downs a magic elixir or pops a couple pills and goes right back to the grind, symptoms relieved. I cannot understand why this is promoted as positive behavior. It doesn’t serve people; it serves employers who can’t be bothered to treat workers as human beings. There may be times when it’s absolutely vital to attend a meeting or intervene in a crisis despite illness, but in all honesty, those times are few and far between.

Anyway. I decided to apply for disability. The process of doing this in the US is horrendous. It’s based on that pathological fear of people getting something for “nothing,” and the powers that be require sick people to jump through a lot of hoops to prove they’re really sick (unless you’re on your death bed; I have a few friends who were granted disability pretty fast when they were not expected to live more than a few months).

I filled out the on line application and it was denied. I learned later that applications are pretty much routinely denied, as a way to sort out those who are “really serious” about pursuing the matter from those who apply on a whim. Since the application is long and difficult to complete in the first place, that seems excessive, but that’s the way it works. I appealed. The appeals process stretched out over two years. It involved gathering documentation from every conceivable source, going back for ten years. Every doctor I’d seen in that time had to provide a statement. My therapist recommended a good lawyer. Without him, I never would have gotten through the appeal. Even with his help, I was tempted to give up more than once.

Because of ableist attitudes, my doctors disagreed as to whether or not my illness constituted a disability. Those who knew me best asserted that it did. Others, who’d seen me rarely or only on good days, said it didn’t. My psychiatrist at the time proved the biggest stumbling block, because despite the facts that I’d never been able to participate in a “normal” job more than eighteen months, had never worked full time at all, and participating in standard workplace environments made me verifiably psychotic and suicidal, he claimed I could handle a job if I “really wanted to.” That is, because I didn’t present as irrational during my meds checks (fifteen minutes once every couple months, the only time he saw me), I was not disabled.

I had to have a hearing before a judge and a panel of experts. My lawyer advised me to let my hair grow out, not to care for my appearance, and to show up in sweatpants. That is, I had to perform my disability right. Putting on what I considered the appropriate clothes to appear before a judge would have been a mark against me. Breaking down in tears during the hearing was a plus. The fact that I’d managed to graduate college was a minus, because people with severe mental illnesses don’t complete college. Etcetera.

In the end, the judge decided in my favor. At this point, some readers may be angry because I “gamed the system.” I’m angry because the system as it is required gaming for me to get my needs met. At the same time as I was going through all this, a friend in the UK was suffering a major depressive episode, too. She went to her doctor, told him what she was going through, and he gave her a slip of paper saying she needed disability support because she couldn’t work due to her mental condition. That was IT.

My experience is one example of the need to perform illness for the able. The consequences of requiring sick and disabled people to perform stretch much further and have an extreme negative impact on our lives. They’ll continue to do so as long as able people are the ones defining disability. One thing I notice a lot is how much the very idea of disability, at least in the US, depends on the normalization of unhealthy aspects of capitalist/corporate culture, like quelling your symptoms with cold medicine so you can go back to work. The idea is, if there’s any way at all you CAN conform, then you’re not considered disabled, no matter how much physical or mental distress you might be in. In this culture, the only way to “earn a living” (in itself a horrific concept) is to work at a paying “job.” Yet jobs providing a steady source of income take limited forms. Even with accommodation, many with chronic physical and mental illness cannot participate in these forms. We may be suited to other work where remuneration is less automatic (or doesn’t exist at all). But there’s always the fear that if you make too much noise about this other work, you’ll sacrifice the support systems that allow you to do it at all.

Here’s another personal example: I’m an author. I’ve published six books in my Caitlin Ross series (gratuitous promo: check out a sample!) As a self-publisher, I do virtually all the work on every book myself. I do the formatting, the interior design, and the editing, in addition to writing the numerous drafts of every volume. Some days I work twelve hours at a stretch. Other days, I can’t work at all due to one or another of my illnesses.

I’m not independently wealthy. The ONLY reason I can engage in my career is my disability (well, that an an understanding partner). The extra $400 a month (yep, that’s all) and the insurance covering my medications assuages the guilt of not “earning a living” enough so that I can focus on writing. Yes, some (most) authors work at full time paying jobs aside from writing. I cannot do this. Working at a job-job takes so much out of me that I simply cannot do anything else. I wish I didn’t have to explain this every time, but I feel like I do because of voices both internal and external that scream “BUT SO-AND-SO WROTE [Bestseller[ WHILE WORKING 12-HOUR SHIFTS AT WALMART; WHY CAN’T YOU?”

Anyway. I live in fear that some government official will see those six novels, or get wind of the days I work a lot, and decide, “If she can do that, she can go get a job at the gas station down the street,” and cut my disability. Because in the mind of an able person, time is time and effort is effort, and what’s the big deal? Even my last therapist made cracks about “people on disability hanging out scribbling in the coffee shop instead of doing something productive,” as if the ability to do one is the same as the ability to do the other. Sick and disabled people are constantly walking this tightrope between performing the disability well enough to be believed and maintaining quality of life, because to able people having any quality of life at all is a privilege to which they alone can aspire.

Really, as far as I can see, the only way of doing away with the need to perform illness is to redefine society’s relationship to it and make room for people to live their lives in the best way they can. It would require a sea change in our relationship to the very concepts of ability and disability, and it would start with listening to sick and disabled people and believing what they say about their experience.

I suppose that’s too much to hope for, but I can dream.

4 Ways the Publishing Industry Promotes Ableism

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.