Some (private) videos I made of major meltdowns and decompensation episodes were not admissible as evidence for my psychological disabilities in my Social Security Disability Income Case. Therefore these vlogs I share also should not be counted as evidence against my case—especially since I am not making money at them (not even one cent from any ad revenues, they’re too obscure), very few people make money at them, and no one would ever conceivably pay me to make these videos any more than they would pay someone to make a video of a turtle having sex with a clog. (Actually the latter someone probably WOULD pay for.) The videos I make don’t demonstrate a capacity to work full-time or demonstrate many other vital capacities and skills necessary to work full-time. If people can make videos of their cats in Edwardian dress reenacting a scene from ‘Persuasion’ on a large trampoline covered in dawn frost on a whim that are more popular and get more ad revenue, making my videos is not a job.
This is a lot of things—video diary, self-expression, anger management, closure, letters to my beleaguered past self, processing ideas more deeply by saying them aloud. Lastly, it’s a little bit thinking that there could be another person out there a bit stuck where I used to be, confused, feeling completely alone, unable to understand or even name what’s happening, despairing and wanting to die. Thinking about what I would have wanted to hear, and paying it forward. Then any future stolen child can sweep through my words, hear what they need, and let the lest blow away in the wind. And that’s ALSO not a job or even volunteer work. It’s a moral imperative to me. It’s leaving a trail of pebbles out of the woods so Hansel and Gretel can get away from their abusive parents AND detour ’round the ginger house to change their names and start a new life, maybe found a city called Joy. It’s carrying out everything I carried in. It’s taking the extra few seconds to chuck the recycling in the other bin. It’s doing the right thing, not the lucrative thing. That might not make sense. But Hansel and Gretel aren’t going to pay me either. They didn’t hire me to make these videos. No one did. No one will.
I heard tell of a case in Sweden where it was argued that a person who kept a blog was not disabled because of the blog. Oh really? Virginia Ridley, housebound and plagued with seizures that eventually killed her, compulsively kept a 10,000-page diary that, among other things, detailed her urinary output. (Why wasn’t that ever on the New York Times Bestseller List?!) Good grief. Even the judge that presided at my hearing harped in his decision on the fact that I have on occasion written the odd (bad) free-verse poem as evidence I’m not disabled. Which is ridiculous. People can be disabled in all kinds of ways and still write poetry, and poetry is not a job. There’s a whole studio of developmentally disabled people in Oakland, CA where they work with wood, textiles, clay, painting, even an entire upstairs filming, mixing, and recording suite, writing and producing their own material, and their artwork has had national showings, with no disclaimers about their disabilities. They’re too disabled to hold normal full-time jobs and they need to supervision and staff there. Free-verse poetry—anyone with a fridge and a set of the right magnets can do that. Anyone with a pen and a piece of paper. Poets don’t make money, as a nearly universal rule.
It is virtually impossible to sustain gainful employment in any of the arts. Merely being able to point a camera, being able to speak, does not make one capable of full-time employment. Merely being able to read assemble words into speech does not grant the massive other skills and tolerances needed for consistent gainful employment that many take for granted because they’re not noticeable unless you don't have them, unless it’s increasingly excruciating and suicidally deranging to be employed. There’s a huge gap between those who can work full-time year round and those who can’t even feed themselves and need assisted living situation and this is the majority of the disabled population. We need differing levels and kinds of support.
Some people receiving Social Security Disability Income also hold part-time jobs. The point of SSDI is if you’re too disabled to make enough to live on. My problem is that my disabilities are psychological and invisible and therefore difficult to demonstrate, show, prove. How can I prove a negative? This video elaborates some of my frustrations with these issues, the process, and double binds, as well as the disconnect between what you see and my experience.
…it is not necessarily reasonable to expect people’s howl of outrage at the apparent and hopeless dead end that is their life to be orderly and productive. It cannot be ignored that the people who set the standards for what reasonable and appropriate protest consists of are, inevitably, the exact fuckers who are being protested against. It would be folly to expect or assume that these standards are in any way constructed to favor the actual efficacy of the protests, or, indeed, to provide for the well-being of the protesters in any way, shape, or form. The evolution of a system in which the poorest and most deprived portion of the population has no useful outlet for their anger such that it is ultimately channeled into self-defeating riots that make it easier to sell the ancient lie that there is such a thing as the devil’s poor. All of which is to say that the viewpoint that the riots were an absolutely awful thing is in no way incompatible with complete and total sympathy for the people involved in them.
…entrenched power is never going to define “acceptable protest” in any way other than in its own favor…
—Philip Sandifer, ‘Build High for Happiness (Night Terrors)’
Imagine someone who was raised entirely by and around people who were all increasingly deaf. A dreadful consequence of this, emerging into the world of people with normal hearing, is that such a person would be shouting everything they attempted to communicate at the top of their voices, and people would cover their ears, give dirty looks, complain about the noise, and avoid this person.
But then imagine the person overcompensating, trying to unlearn their basic way of speaking, and with a great deal of effort and time being able to speak in a very soft voice, but is then still ignored, to their frustration and sometimes peril. Leading our hero to revert to shouting out of desperation to be heard when the murmuring doesn’t work, and getting fed up from having put forth this great effort only to still fail. And resenting people who were just raised to have normal voices, who never had to go to so much trouble in order to be understood.
I was raised among people of increasing willful stupidity and unwillingness to hear me. This was disguised as incomprehension, and framed as me being wrong or stupid. The net result was that I tried very hard to explain, and put all this effort into communicating that was not reciprocated. I felt increasingly frustrated, unheard, and as though there was no point in trying to talk to anyone.
As a consequence, when I started interacting with normal humanity, I came off as defensive and an obnoxiously intense communicator, and failed to express what felt the most important to me.
Last November after the US presidential election one of my favorite activist vloggers, Kat Blaque, made a video that really spoke to me. She discussed her whole orientation toward her work, an approach of assuming that people just don’t understand. Her philosophy seemed to be that if she could explain in an entertaining, informative, respectful, and kind way, people would understand, and we could get along more decently with different kinds of people.
Kat Blaque talked about some of her experiences surrounding the election, people who voted for Trump and people who were terrified of what his presidency would mean for their safety and quality of life. She’d had to come to a hard realization that was all too familiar to me—that some people don’t actually care.
It’s disempowering to realize that we can’t actually make people care, and if people don’t care they will not make an effort to listen or understand, and may actually expend effort to deny and exhaust and shut us up. And in my experience, a lot of people in this position are the noisiest of the privileged, who tend to dominate the conversation, bully and verbally abuse their opponents, and drive it toward divisiveness. The most defensive and understandably frustrated people trying to explain get angry, get fed up, start shouting, and drive off any potential audience who really actually are listening, and make the whole subject extremely touchy for everyone, so we stop having the conversations that are the most important.
I spent a lot of time reading how to talk. You can go ahead and laugh, it’s kind of ridiculous that as someone who grew up with books instead of friends, when I found I couldn’t talk to people, I went and read books about communication to try to fix the problem. I always felt a little suspicious of the idea that assertiveness would fix everything, and that the only problems in communication are always misunderstandings. This felt too much like my upbringing, where I did all the work and still went unheard.
I tried talking to people about this, but none seemed to understand the situations that continued to be a problem, no matter how I communicated. Looking back I realize that people who didn’t know the situation I was talking about were either people who aren’t targeted for bullying and abuse and easily repel abusers as people with good boundaries, or else the people pretending incomprehension were themselves very passive-aggressive bullies.
One of the big problems with books about communication is that they don’t discuss the most dangerous way communication fails—someone doesn’t care, or at least they care about something else much more that listening or understanding threatens. They can claim to care and actually feel as if they do care, but if their actions don’t reflect that, there’s something they care about more that they’re not conscious of. In this situation there’s nothing really that communication can do, because communication involves listening just as much as it does speaking or writing.
I know what it’s like to be that person. For most of my life, I used to be the same way. I was raised by people who routinely denied, with increasing skill, uncomfortable realities about life and people. So I grew up like them, not even aware of all the things I wasn’t aware of, too wrapped up in constant fear and frustration to expend any awareness on what I was doing and saying. And there was no way in the world for people to break through that to reach me. So smart, assertive, socially well-adjusted people would give up and move on, and the only people left were passive-aggressive nasties like those I’d grown up with who were also all left with me. A fun time was had by none.
When I see people whose brains seem to be wrapped in cotton wool, who have unaccountably become adults so blinkered to reality I wonder how they’ve survived this long, I also get a familiar sinking feeling. I know I can’t communicate with people who don’t want to hear. If I wind up falling into the trap of showing them the sympathy I wish I’d had when I was that stupid and asleep, they latch on like banal leeches and drain my life of all color and destroy my desire to talk to or be friends with anyone.
I believe that there are plenty of people out there who, like I became, do possess a desire to understand, and the willingness to make an effort to that end. And have done some work to recognize the ways in which they deny reality, and honestly want to learn to do better.
Yet I’m still very much the product of my upbringing. Only now I’m painfully aware of how defensive I sound, how long I can talk or write about something, filibustering and probably driving away potential audiences. Sometimes I may be using too much jargon in my desire to appear intelligent, in a bid to try to stop people patronizing me, and skip steps to understanding.
I like it when bloggers or vloggers, writers or activists or artists I like, discuss their process and choices they make and troubles they face in communicating tough subjects in ways that keep those people who want to understand and listen around. Trying to overcome their own biases of advanced knowledge of a subject, trying to remember what it was like to just be starting to learn, breaking down concepts, making things simpler but still organized and enjoyable. Trying to figure out clever ways to be entertaining and also take advantage of what the audience knows to hack understanding and speed it up, without alienating or losing people, or becoming too topical and therefore dated. Talking about the problem of the passive-aggressive bullies flocking to them and creating almighty stinks of violent static that derail the conversation, get personal, and dissuade people from listening to and respecting us. Talking about other problems with communicating and how their process is as ongoing and adaptive as both those bullies and also increasingly savvy audiences.
I realize that probably most people aren’t interested in going backstage, so to speak, and hearing the technical breakdowns of how the writing or art or blogs get made. But I also think there is an audience out there for discussions of the process of communicating, because of how many of us do them, and also read and watch them. We may not learn skills we specifically implement but we gain understanding of how people hear and understand and learn. We find out what makes people tune in and what makes them tune out.
There’s no way to please all of the people all of the time, and for some of the people there’s no way at all to please them ever—as I know from my days of being exactly that willfully stupid. There was nothing that could have rescued me from my own ignorance except some really tough realities and wake-up calls, and even then I still ignored them out of sheer terror until I had to wake up or die. Sometimes quite literally. It’s a really distressing thing to wake up this way, and realize everything I knew was based on lies, and have to figure out extremely quickly things which many people never had to have spelled out for them.
So I know there’s a danger in catering to some audiences. But for a while I felt so angry I didn’t want to try to understand any listener’s point of view at all, knowing that the people in the most hurry to tell me how to talk to them were not people who were actually interested in hearing what I had to say. If I listened I would risk shouting at the top of my lungs, driving away everyone, and giving up trying to talk. Thereby achieving the true, if unconscious, goal of all these unsolicited advisors—silencing me.
At the same time I have to deal with people who are the toughest audiences in the world, just to survive. I have to try to convince people who wield power over my basic needs, who don’t want to believe me, that I am disabled.
Until recently I was just as hell-bent on denying that myself, because of how disempowering it feels, how terribly vulnerable it makes me when I am open and vocal about my disability. I’m haunted by plenty of experiences of abuse and being used by people because I’m disabled, and those experiences are continually refreshed for me by new discrimination and ableism to be sure I don’t forget. I’m faced every day with the reality that the overwhelming mainstream narrative is driven by and for people who can work full-time. I’m faced every day with the unspoken assumptions that our worth is determined by what we do for other people.
The huge problem with unspoken, unconscious assumptions is that because people aren’t aware of them we can’t talk about them, and what we can’t talk about we can never change. But I have to believe that there are people out there who are willing to listen and willing to question, just as I am, just as I had to become in order to unwrap the wool from my brain and adapt and survive in a reality I’d been raised not to see or admit the existence of. I have to believe that when I talk about the world I have had to come to grips with, the things I notice, that there are people willing to listen and engage. But I also have to know that people who don’t want to hear me cleverly disguise themselves as people wanting more information, or wanting to help me communicate, in order to draw me out and knock me down. It’s what they’ve always done. They’re not going to stop just because I’m wise to their game.
The better we get at exposing derailers and false allies, the craftier they get at hiding their goals. And it’s worse than lying, because they are first and foremost lying to themselves, constantly, telling themselves they are open-minded and rational and compassionate even as the impact of their actions and choices shows the opposite to be true. The people most convinced of their own objectivity are the most stolidly irrational and deluded people, whose delusions protect them from any whiff of reality.
Again, this used to be me.
This means I’m in an interesting position, having been the most asleep and brainwashed person imaginable, now wanting the most to talk about the stuff I denied the hardest. I’m still afraid of people like I was, because they’re the people that are the most dangerous. Not the obviously ableist people, who will come right out and say the most outright bigoted things about people with disabilities and especially mental illnesses. No, the really dangerous people are the ones that believe with all their hearts that they’re our allies, that they ‘don’t see’ disability, that they’re on our side—but are at the same time ignoring what we say. Especially when we tell them to stop, to listen, or that no, things aren’t okay and their wishful thinking is only that.
To them the problem is that I’m talking about the problem, or my attitude about the problem, and if I just stopped talking I’d see that there was no problem. They don’t have to live with the consequences and pains they are denying. It’s really easy to deny pain if you don’t have it. They learned this early and often, so now it’s standard operating procedure for them to deny wholesale anything they don’t like.
And because a lot of them are privileged, and dominating all forms of mass communication, they have a lot of power to shape their reality in such a way that they never have to see or share neighborhoods or stores with the people whose reality they’re living in denial of. I was raised in a bubble of privilege like this. I know that it’s more rewarding and therefore more common to only choose friends and entertainment and news that validates our sense of entitlement and our picture of reality, and our sense of being good and deserving people. When we have the power, we can and do tune out or turn off anything that makes us uncomfortable, and get so insulated in those habits that no voice will ever reach us. Certainly no kind, respectful, helpful voice.
With power and privilege we write and publish books about communication, that we sell and teach to similarly privileged people. We set the rules for how people are allowed to complain and protest their treatment, when and where. These will always be ways that allow us to tune them out, that fit in with our established system that lets us pick only the things we want to hear.
We come down hard on people who get reasonably angry at this and break the rules. Somewhere deep down, we know they’re right to be angry, and we feel our power and safety threatened. We make examples of them and solidify not only their silence but the silence of others like them, who are struggling just to get by and don’t want to get persecuted so harshly for complaining that they lose what little they have.
I know I’m right to fear this. Incidents of bullying and abuse can damage my capacity to survive, and do so in ways that either aren’t illegal or that I can do nothing to stop, because I’m so damn poor and hopelessly stuck.
I know I’ll be blamed for it, too, by people who are deluded so much like I was by the belief that disability, mental illness, and poverty can be overcome by willpower alone. That oppressors and bullies can be negotiated with and talked out of hurting us, when hurting us keeps their needs met and their lives comfortable. It’s easy for me to fall victim to the idea that the only worth I myself have is in what I do for others. Employment is based on this, and asking one another what we do for a living, and jokes about jobless people living with their parents, or how laughably undeserving of dating or friendship.
Also based on this is our fetishization of mad geniuses, or ‘inspiration porn’ of the socially acceptable disabled who insist that we can overcome anything, or stories like ‘Rain Man,’ or even our sensationalization of mentally ill mass murderers. We spend our time focused on mental illness and disability only when it significantly impacts the world of the privileged. Since those are the stories people with disposable income and free time are interested in, those are the ones that get told and re-told. They’re the ones that sell. It doesn’t mean they’re not worth telling, but when they’re the only stories heard, that leaves a lot of us overlooked and oppressed.
Letting the free market decide what we fill our days with and how we live and work ensures that we’re all informed on a nonstop basis that our value is what other people will pay for us. It puts me in the shitty position of having to be sane and competent enough to communicate that I’m too mentally ill to work, and to have the very fact of me doing so thrown in my face as evidence that I’m not—or else, if I lose my temper and have a meltdown, to be denied because my mental illness is abrasive and the person in question is coming down hard on what they feel is inappropriate behavior.
It puts me in the position of feeling paranoid every time I speak up and speak out, that my words will be used to deny my basic needs and make it impossible for me to survive.
And it puts me in the position of having to explain that while communicating well is something we all care about, for me, my life hangs in the balance. There are potential consequences that I can’t ignore or deny. I can’t behave the same as someone with privilege, because I don’t live in that world. It makes it hard for people to understand if they’re comparing their own frustrations and fears when their lives aren’t ruled by those things. It makes it hard for others to imagine what it’s like to be me, how exhausting it is to live this way day after day, year after year, deteriorating rapidly in every way.
It makes what I have to say uncomfortable to listen to and easy to ignore.
Thanks for reading.
Unedited video, too few spoons yesterday when I recorded this. At one point I say ‘below zero’ when I meant ‘below freezing.’ Expect my concentration to deteriorate further in upcoming months before my Annual Complete Breakdown in February. OH THE PAIN, THE PAAAAAIN! (If you have seen the old ‘Lost in Space’ series you will get this reference and win internets full of cookies from me.)
As I post this the high today was 73 Fahrenheit degrees and the high tomorrow is 35 Fahrenheit degrees. What I’m able to do today is ten times what I’ll be able to do tomorrow, so I’ve made the best of it. This is some frakked-up North Carolina weather. Although I’d rather have this than unalleviated crippling cold.
Happy National Novel Writing Month, everyone! Since I first joined the (actually, international) frenzy to write an entire novel in the thirty days of November, 2004, I’ve participated more years than not. This year, unfortunately, I’m dealing with the Epic Struggle for Survival and its overwhelming demands on my increasingly disabled, decompensated, and poor self.
Regardless, I have more writing resources, following up on my prior post on resources for diversity and inclusiveness in writing fiction.
First off, #OwnVoices! I am so frakking excited for this one. The hashtag spawned out of an intense discussion on Twitter in September 2015 about young adult novels with characters with marginalized identities being written by writers actually with those marginalized identities, recommendations tagged with #OwnVoices bouncing back and forth across the internet. It’s expanded far beyond that scope, however. I highly recommend this interview with the hashtag’s originator Corinne Duyvis to learn more about it and why it’s so important to social justice to promote awareness and accessibility of the work of marginalized people. You can skip to the end for her top #OwnVoices recommendations. You can just dive right into this #OwnVoices Twitter search, or type it into Google and come up with lots of cool recommendation lists like this one for disability and neurodiversity #OwnVoices that also links to a longer curated Goodreads list. And here’s a really helpful Q&A post from Lamar Giles discussing how this applies to those of us authors who want to read and write more socially conscious and diverse works.
Second, Writing With Color, “a blog dedicated to writing and resources centered on racial & ethnic diversity.” You’ll find book recs, information on stereotypes and tropes, advice, guides, and more.
Third, Abulafia. I both love it and am overwhelmed by it. It’s an enormous wiki of user-contributed random generators. There’s the Story Games Name Project, which is a bunch of generators of character names from so many different cultures—contemporary, historical, fantastic, and even humorous (like spammers, ridiculous hoboes, and trappelensteink). You can instantly fill your burning need for a new film noir monologue, Rufio (from the movie ‘Hook’)-style insults and beatdowns, as well as plenty of more practical generators for character and place names in cultures other than one’s own. Many generators, like the Art, Grace, and Guts Oracle and the set called Crunchy Bits tickle the imagination and can stimulate inspiration. A lot of it is geared toward Role-Playing Games, however, unlike:
Language is a Virus. Oh how I LOVE this site! If you’re a sucker for surrealism, the Beat Poets, or messing with language (and your own mind) I heartily recommend it. You can generate masses of original text in various forms from haiku to Shakespearean Sonnet. There’s a wealth of writing techniques described here, including William S. Burroughs’s classic Cut-Up Technique, Anais Nin’s Collage Technique, and Charles Bernstein’s 66 Writing Experiments. The site also features interactive Writing Games, a random generator of writing prompts, a section exclusively devoted to poetry gizmos well as an ENORMOUS set of guides to all kinds of poetry and poetry elements from a diversity of cultures (and historical forms as well as contemporary), and a collection of text generators.
I was delighted to find a massive list of non-binary gender names on NonBinary.org (also an excellent resource). Unfortunately most aren’t tagged with their culture of origin, though there are a lot of non-Eurocentric entries.
And finally, though this isn’t a resource, I found this article on Doris Lessing particularly inspiring to me. Outsider/visionary writing (or art) generally refers to a self-taught artist rather than a more conventionally schooled one. This really speaks to me, but also to the artists whose work is deemed ‘unmarketable’ because of its lack of appeal to/representation of the culture and people with the most privilege and power. Especially in the past, but even today, many marginalized people have limited or no means or access to adequate, effective arts education. Or the arts education available is nearly inconsequential as education budget cuts overwhelmingly target arts programs and devalue the development and nurturing of all-important imagination and innovation for STEM subjects that drive up those superficial test scores by which we too often tend to measure individual and institutional success. And then we complain about how cookie-cutter, mass-produced, and pandering popular culture seems. But that’s another rant for another time.
The point is, you don’t have to have a schmancy expensive piece of paper and several thousand dollars of student loan debt to be an artist. Especially in this age of mass information and communication and innovations that reduce and eliminate traditional ‘gatekeepers’ (like record labels, publishing houses, and film production companies), and the capacity to connect with people who have vastly different life experiences to ours all over the world, and increasing public free access to the internet, we have more tools than ever to educate and express ourselves. We can find our own voices. We can learn (albeit with lots of uncomfortable trial and error!) how to honor and raise awareness and visibility of marginalized people’s experiences rather than appropriate and exploit them. We can jam the culture and make our own kind of music.
In his song ‘Anthem’ Leonard Cohen sang, “There is a crack in everything; that’s how the light gets in.” To me, we are all lighthouses. All our myriad ways of speaking, creating, and expressing are how the light gets out.
Wikipedia entry on self-harm in animals
Newfoundland News’s article on animal self-harm