Vlog—Reality Check: ‘Not Disabled / Homeless Enough’

My next video (and it’s shot & almost ready) will be at least a little more positive; it’s a Fierce PRIDE one and I enthuse about the arts. I’m aiming to post it tomorrow to move on as soon as possible to something positive, because I definitely need to.

I’d like this to be my last prolonged swing-for-the-fences rant for a while. I do need outlets for my anger, and I think it’s important to address these things and defend myself and raise awareness about these issues, but there’s a point where I don’t want to be yelling so loud and long at the deaf that I run off people who are actually willing to listen and too busy being awesome and making things. That’s catering to the exact wrong audience, and falling into the same trap of orienting myself to and spending all my energy on exactly the energy drainers I want the least in my life, that have made me more misanthropic and suspicious and angry, and also prone to this defensiveness. I get the feeling the very people I’m railing against are trapped in this same constant cycle for the same reasons. I’m making choices as I go to figure out when I need anger to take care of myself, when to stand my ground and speak out and when to eject and go talk about art. I want to start a series talking about the arts to try to encourage at least a periodic focus for myself on something positive. The definitive positive attractor in my life, in fact.

I may possibly need to screen comments since I am in a bad place right now, and clearly volatile and reactive. Although I still see the comments (which is the problem, and unlike Ashley Judd I can’t afford to hire someone to screen them for me for my psychological well-being—I don’t need more stress on my plate), and I don’t want to turn them off because I really appreciate the nice ones and the messages I get on my channel. That’s the problem with comments—mostly only strong feelings (or extreme boredom) move people to reply, so they’re either really nice or pretty vile. That’s the internet for you.

And it’s easy to say ‘just let it roll off your back’ when you aren’t the target; just as it’s easy to say ‘hugs don’t hurt’ when you’re not a burn victim. If you’ve been rubbed raw by verbal abuse most of your life it leaves you very sensitive to it, and if you’re bleeding internally you can still die from it. Resilience is easy to take for granted if you have it, and not understand why other people don’t just bounce back, suck it up and deal. Then again, most people I meet who say ‘suck it up’ or won’t ‘walk on eggshells’ are also prone to endlessly complaining when the pain or problem is their own. Go figure.

I’m also aware I’m mumbling more. I don’t have the spoons to fix the audio. It’s hard enough just to make a video at all now, and get it uploaded. I know I’m also not responding much to other people right now, and that weighs much heavier on me. I think maybe I’m afraid what might come out of me is anger or misery like this. I know it sounds bizarre that I might not be replying to you because I care about you and I’m afraid of me right now, because I know how cold it can feel to contact someone and get silence back.

Je ne suis pas art

Les blouses blanches

…‘The White Coats.’ It's the title of an Edith Piaf song but the version I glommed onto and love is by Martha Wainwright, who won me over with her song ‘Bloody Mother Fucking Asshole,’ which she later admitted was about her father, the esteemed folk singer Loudon Wainwright III who has had… family difficulties in a sprawlingly complex and very talented musical family which also includes his son and Martha’s extroardinary brother Rufus—but also her duet with Snow Patrol ‘Set the Fire to the 3rd Bar.’ She did a whole album of Edith Piaf covers, and there are a bunch of videos of her doing them live in very Dresden Dolls/Amanda Palmeresque cabaret fashions. One of the live shows she’s performing with her (now dead) great mother Kate McGarrigale playing accordion.

Kate McGarrigale also wrote this beautiful song ‘Proserpina’ (Romanized name of Persephone) from the point of view of the mother (erroneously referred to as ‘Hera’ in the lyrics?!), and Martha covered it after the death of her mother and there’s a gorgeous video of that online too.

But initially I was just going to write about how I’m kind of not actually learning French because I’m stubbornly bad at learning. I keep trying all these ways to trick myself into it like ‘Duolingo’ which is kind of a game and very fun. And then also watching familiar movies I’ve seen countless times dubbed in French, and ‘Amélie’ with the subtitles off, and playing an unbelievably addictive resource management game called ‘Sunken Secrets’ with the language set to ‘Français.’ And also Audio Hijacking all of Martha Wainwright's live performances of Edith Piaf covers and tossing them into my current shuffle playlist.

So I’m not learning French. Not one bit. If I had to speak it or write it I would fail 1000% of the time. However, I’m gradually recognizing what many French words mean through repetition. Sort of like how I can recognize someone’s face but not put a name to it, and know the context of how I know them but not even be able to give you the first letter of their name. And I’m listening today to Martha singing ‘Les blouses blanches’ and the creepy piano in the background…

…and I suddenly am laughing my ass off because I realize that Edith Piaf was CRAZYCAKES and instead of imploding with it she waved that flag from the ramparts and became a beloved cultural icon that still resonates today. Like wearing her scarlet ‘C’ for all us other Crazycakes people to also fade out of the woodwork and, say, cover her song laughing madly to the accordion and applauding madly because we all recognize that men in white coats and women in white dresses with hands that sang and flowers with light all around them are exactly the same. I’m not crazy, it’s that hand that’s laughing, and we will love each other forever. HAHAHAHAHAA!!!!

And we’re all things in Edith’s white-dressed dream: the men in the coats, the woman in the dress interred three years for being crazy, the hand, the flowers, the light, the laughter, the crowd, the French people, their culture, the music, the musicians, Martha Wainwright, her dead mother, the accordion, Edith’s own death, all the decades between and yet the memories and words and music living on and on, because we are all still interred here on this Earth with our cousins and grandmothers and the bones of our ancestors and wisps of zygotes of the future cyberbarons of thought to which our laughter and words may echo or dissolve.

Je ne pas une pipe

She is not crazy/she is crazy. This is a drawing of a pipe, and it is not a pipe, and yet it is a pipe in that it is a representation of a pipe and the word ‘pipe’ is also a representation of a pipe, and images are treacherous and so are words.

(For the next part there are deliberately not images, so you must dredge up, dust off and use your imagination, whatever is left of it.)

Here is a Campbell’s tomato soup can. It is like millions of others, in pantries and landfills everywhere. It is not art. Here are the drawings of the current design of the can, which both are and are not art; they were made by people as options to advertise and inform, but will be mass produced if effective or thrown away and forgotten if not.

Here is a photograph of the can on a grocery aisle. It is not art. Here is a photograph of the can, dented but not broken, label peeling, covered in ash and dust, after a natural disaster or a pollutant leak, next to a broken doll. It causes an emotional reaction. It is art. Here is a painting of many cans of Campbell’s tomato soup. It is art. Here is a photograph of that painting in a gallery made by an ordinary camera phone of a tourist. It is not art.

Here is a comparison of all these different images side by side, with captions. Is it art? Here is an article listing these different iterations and contexts of that same image. Is it art? Here is an article asking, “What is art? Context? Emotional reaction? Rarity? Zeitgeist? A congruence of factors? The eye of the beholder? The ease of the creation? The intention of the creator? The message or theme? The conveyance of that to the beholder? The value of that theme, with or without context? The rebelliousness against the mainstream, the taboo, the Banksy, the possibly illegal or banned or censored or scandalous? The scarlet A of Art assigned by the masses? The smell of burning books, the death threats perhaps carried out, ‘Je Suis Charlie’?” Is the article, itself, art?

Here is a movie about the pornography hearings Congress held about Allen Ginsberg’s ‘Howl.’ Here is the quote about ‘knowing pornography when I see it.’ This poem would not have been well known if not for these hearings, the Fahrenheit 451 of burning pages and incandescent outrage. ‘Howl,’ we understand now, is most definitely art.

But do we ‘know’ ‘art’ when we witness it?

Here is John Cage’s ‘4'33".’ It is four minutes and thirty-three seconds of silence. It has been arranged for multiple instruments and performed many times in many places. It is, we know, art.

Here is a flash mob orchestra performing the opening theme of ‘Star Wars,’ strategically placed in many places of a square in Germany, captured by many cameras, as well as the reactions of the surprise audience, from delight to disinterest to irritation at needing to be somewhere else in a hurry. Is it art?

Here is a urinal, taken out of context and placed in an art museum. Is it art?

Here is a block of 1950s urban concrete housing for St. Louis, from the architect of the World Trade Center towers and the St. Louis International Airport Main Terminal, meant to address the problems of poverty, crime, racial segregation, homelessness, gentrification and urban decay. Within 15 years after completion the doomed housing project was nearly abandoned, decaying, dangerous, a crime-infested neighborhood of boarded-up buildings, failed lights and elevators and broken windows, its sad architect lamenting, “I never thought people were that destructive.” The number of factors contributing to the failure and eventual demolition of Pruitt-Igoe through the first half of the 1970s were manifold. Was this art? It had all the ambition and talent and vision and desire to be art. It met chaos theory, and died a most infamous, protracted, violent and ignoble death.

Here is a question: is the question ‘Is it art?’ a waste of time and energy? Are there more interesting and better questions that could be asked if that question were led away and given a drink of something soothing, and we agreed to not ask it, and ask what else we could ask instead?

What other questions might rush to fill the mighty vacuum created by such a weighty, overasked and overblown question? ‘Is it useful?’ ‘Does it make an impact, on someone, somewhere, no matter whom or what their privilege or socio-economic status?’ ‘Does it fulfill an aesthetic as well as informational or practical function?’ ‘Does it reveal something about ourselves to ourselves, perhaps even only privately?’ ‘Does it invigorate?’ ‘Does it PROVOKE?’ ‘WHAT does it provoke?’ ‘After witnessing this art, do people mill around, drink overpriced glasses of wine and go home and do nothing different, or are there niggling seeds that oh-so-gently alter choices in the days and years to come, or are we haunted forever, or do we experience a frisson right there and immediately make a life-changing decision?’

Cleolinda Explains it All

‘What is the impact of this?’ …not just on the perhaps only one person who is impacted by it, perhaps only the paint-addled starving artist or trolley-squashed vagabond-looking maddened (and ironically atheist) architect of the still-unfinished cathedral, or the one person who is still thinking an hour later about that one line from the film, or is in a grocery aisle suddenly seized with inspiration for no easily discerned reason other than a culmination of multiple chaotic forces—the impact that that one person has on others, with their words and choices.

Sometimes it isn’t the initial thing itself. Do I listen to Edith Piaf performing Edith Piaf? Well, only one song, ‘Non, Je Ne Regrette Rien,’ and it’s because of ‘Inception’ (which furthers my point that it wasn’t a direct impact of Edith herself but her impact on Christopher Nolan and his fielding her into me with such an impact). I feel I should love Joan Jett more than I do, because she metaphorically actually cleared roads where there weren’t any, roads that allowed P!nk to exist, and I adore P!nk, and I have a playlist of her songs that hit home so hard for me it’s like she’s writing from the back of my brain somewhere and laughing her ass off the whole time. She motorcycles up and down the now well-paved roads drinking straight from the scotch bottle “SO WHAT?!” at 4 a.m., but without Joan Jett and the Runaways there wouldn’t have been those roads and I might never have even heard of P!nk and she might just be in a trailer somewhere, as angry and silent as I am, and the world would be beggared by this.

‘Twilight’ fascinates me. Not the books. Not the movies. What enriched my life was Cleolinda Jones’s deconstructions (although they weren’t called that because the buzzword hadn’t hit its stride) as well as M15M versions of the movies, freely available on LiveJournal (yup, that’s how old this stuff is) and what I learned there. It was because of what Cleolinda wrote about ‘Twilight’ that (1) I actually learned what it meant to be a feminist and immediately and loudly became one, marrying my anger to where it was supposed to go, (2) (at the same time) read Gavin de Becker’s ‘The Gift of Fear,’ and (3) subsequently took rape prevention and self-defense courses, and these were the first things that did a damn thing about healing my rape/child sexual abuse/sexual assault and self-esteem issues.

That’s not all her deconstructions did, and as far as I’m concerned the writing she did about that series, its context, its impact, what it says about both feminism and women’s own fear of it, our own reactionary and often unconscious choices, our persistent love affair with toxic masculinity and this subtly and often overtly disturbing narrative we keep on repeat without thinking about it—it’s a masterwork and ought to be published and discussed in scholarly circles. She is hilarious, brilliant, self-effacing and loves the series for its ridiculousness as well as the cultural response, like pixy sticks for her brain, and is incredibly open about her own unreliable narrative while she simultaneously deconstructs and with amazing deftness points to the things that led to ‘Twilight’ with more awareness and depth than I’m sure Stephenie Meyer had, just responding to the same thing all the ankle-tattoo fans also responded to. Ms. Meyer tapped the live wire that was our secret affair, our love and shame, the weird corner of culture that feminism is frustrated with, and feminists are ashamed of when they find in their own personal baggage and angrily hide with lots of bluster. But it’s THERE. And Cleo explains it all, with such a humorous touch that the potential furious jealousy I could have felt at ‘Twilight’ getting published and making absolute pots of money melted away when I understood it not as a series of poorly-written teen fantasies but an almost inevitable cultural phenomenon with a long history of influencing forces.

It became fascinating to me, much more fascinating than even looking at a picture of not-a-pipe. The stories behind the many, many whys of ‘Twilight.’ Not just why it exists but why it was and continues to be responded to not just by people who love it but people who hate it, and people who write fanfiction about it and then turn it into books that then become problematic cultural phenomenons that spark tons of deconstructions and conversations about BDSM culture and abuse and places where these can, yes, overlap; and also a film and sequels and stuff.

In Conclusion

But seriously, because this is the question that will never die even if you know by heart all the words to ‘50 Ways to Kill Your Zombie Lover,’ (don’t forget the refrain: ‘Klaatu barada nikto’) is this that you are reading art? Is there an Art at the end of this book?

Absolutely, definitively, unequivocally not. Nope. Non.


Vlog—Fierce PRIDE: Self-Educated

I feel I should add I DO NOT WANT ANY ADVICE. I DO NOT WANT TO (AND CANNOT, BECAUSE OF REASONS OF DISABILITIES YOU CAN’T HOPE TO UNDERSTAND) GO BACK TO ANY KIND OF SCHOOL THANK YOU VERY MUCH. To do so would be destructively if not fatally bad for me, and because I’ve had actually experience with this and my life and you haven’t, I’m the one who’s the experienced expert here. If you are ‘helpfully’ trying to ‘help’ me back to school (like it’s some sort of chuchlike savior for my mortal money-making soul on this Earth in the face of overwhelming contradictory evidence) you have missed the point of the video and expect a visit from the banhamster. I have a velvet rope and am not afraid to use it. Okaythanksbye!

Shout out to all my fellow homeschool survivors out there!YOU ARE ALIVE, YOU BEAUTIFUL COURAGEOUS CREATURES! <3 <3 <3

What is Homeschooling Abuse? video

Writing & Hypergraphia video

Vlog—Reality Check: I had a minor meltdown.

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.

Vlog—Reality Check: SSDI & Joseph Brinkley

This may be the stupidest, bravest, most desperate or pointless video I have ever made. Please refer to these links below if you’re just coming into the theater of my Grand Guignol now, and want to know what the heck is going on:
Yes, I CAN be disabled and still hula hoop (though I haven’t done so for a long time)
My post-hearing cry for help (answered, thanks to the amazing Allen Welty-Green) 

What Are We Trying to Say, and to Whom?

…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.


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