As I come out about my disability and my situation I hear a lot of frustration and bewilderment from others that this has gone on so long. Which is better than invalidation, but not ideal, because I have done everything I can. Maybe I should start asking that people help me write letters to our representatives about my situation.
My online support group has plenty of people from other countries to offer perspectives on the disability process in their countries. I was told in Sweden fairly recently someone was denied disability because they kept an online blog.
For obvious reasons, this alarmed me and continues to. I’m paranoid about everything I say and do, knowing it’s all under a microscope, that everything can be used against me in this case. How horrible would that be, to have your whole life under a microscope in order to decide whether you deserve to survive?
Claiming that because someone keeps a blog they can work—that would be like saying because I can keep a diary I can work.
The people determining if someone who can work are people who can work. There are plenty of things necessary to work that people who can work take for granted and have the privilege of being unaware of, just like people who can walk probably don’t notice every single small step-up they take. And likewise deciding whether or not someone has privilege should not fall on the privileged—because you’re not necessarily aware what you have. People who can work are not necessarily hip to the differences because they don’t understand what it’s like to not be able to work, and to very clearly be aware of those glass ceilings and walls all the time.
There are a lot of capacities necessary to work that aren’t necessary to do one task one time, or even repeatedly. There’s the capacity to be ruled by another’s schedule and needs, the capacity to put up with people whether you want to or not for a certain number of hours per week consistently, among many other things. A lot of things people take for granted.
I’ve noticed if a person can’t keep a job and isn’t necessarily able to articulate why, it’s open season on them, culturally and socially acceptable to sneer at them with disgust and tell them to just suck it up, quit bitching, and grow up. Maybe that’s what it took for them to get a job, I don’t know. Any time one assesses what it took for them to get an opportunity or achieve something, there’s a huge possibility of lack of awareness of the role privilege, position in life, and supportive friends and family played in achieving that. It’s such an American Dream thing to chalk it all up to individual effort, but even in a person’s own life, no accomplishment exists in a vacuum. A lot of it is not up to us, so many people without the good fortune, connections, and privileges we have cannot reach those things.
The people who will be judging whether or not I’m capable of making an income aren’t really in a position to point at something I do in my life and say that because I can do this one thing, I can also do all the other things necessary to get and keep a job. Keeping a diary or making forum posts doesn’t mean someone could make money from that task. That’s ridiculous. There are so many other tasks necessary to make money that people who can do those things have the privilege of not being aware of.
Like: sustainment. Sustainment is a huge thing that people who just look at a snapshot of my life don’t think about, but I do, all the time. One can do a lot of things to save one’s life—hold one’s breath, run flat out, bear unbearable pain without screaming, withstand a siege, maybe even kill someone in self-defense. But after a while it’s physically not possible to do anymore. I’m great at mustering Herculean effort to do things way outside my comfort zone—for a short while. I’d be like a sprinter. But in terms of marathons, I crumple. And if I push through the pain I start to die. This isn’t about getting past a speed bump, this is hitting a wall and continuing to push.
I’m great at sudden huge bursts of energy right up front, which is helpful when learning a new skill, but in terms of sustaining that effort, eventually there is a dip again in my resources, and my symptoms can only be held at bay so long. I’m pretty great in emergencies, as I know from unfortunate experience. But when those emergencies go on for a long time—as in caring for dying relatives and loved ones (which in my case aren’t necessarily the same)—it destroys a person. I noticed even onlookers got tired and stopped offering support after a while as the emergency of my husband’s life-threatening illness dragged on month after month, and with my father’s protracted death too, but that’s another rant and shall be ranted at another time.
The fact that I did something last year, a month ago, yesterday, even an hour ago doesn’t mean I’ll be able to do it again now. I can’t even count on my own capacities. That’s frightening, demoralizing, and difficult enough to deal with, without having that overlooked by people in a position of power over my survival.
And take these rants. I can pour a lot of time and passionate effort into writing angry rants and writing feelingly about my symptoms and experiences—like here—but that doesn’t necessarily mean I could write about things or in such a way as to make money off my writing, any more than someone who can write to-do lists and Facebook posts could be a paid writer.
Virginia Ridley, and other people with temporal lobe epilepsy (TLE) whose symptoms include documenting every single detail of every day including a log of urinary evacuation and bowel movements (really) in writing, would not be able to sell their scribblings to a publisher any more than I could. It misunderstands the function and extrinsic monetary of the act of writing deliberately.
I suppose the point is that when someone doesn’t want to believe me, or wants to prove that I can do something, their confirmation bias will guide them unerringly to some tiresomely ‘rational’ explanation that does not prove their point but is enough for them to justify taking the action of denying me.
It frightens me. I know human beings can rationalize anything. Human beings rationalized everything that was done to me growing up the only child in a cult, removed from school and contact with people outside and subjected to educational neglect for years. I can definitely see how that would be making this entire process triggering for me. I can see and feel myself struggling more and more as this drags on.
It’s so hard to sustain dignity and well-being in such a situation. You can’t know how hard it is for me—but you can listen. You can read. And if you are, somewhere, out there, thank you for that. And if not—at least there is a chance I might one day be heard, that these words might one day be read, maybe even empathized with.
Child abuse, and in particular child sexual abuse, has often been referred to (I think originally by Alice Miller, but I encountered it in bell hooks’s works as well as others’) as ‘soul murder.’ But what is a soul?
I think that, like other intangibles like ‘love’ and ‘forgiveness’ and ‘generosity’ and ‘caring,’ there may be as many different and sometimes contradictory definitions as there are people. And definitions are just an imperfect way of putting words on things. I can understand a thing without having a deep knowing of it, as well. It’s a very different feel when I finally Get something, and I am changed by that knowing—now I can no longer really act as if it’s not true without knowing I am lying to myself and feeling that betrayal of my own values and beliefs as an itching under my mental skin to keep me awake.
I felt touched in a shivery deep way by bell hooks’s descriptions of soul in ‘Rock My Soul: Black People and Self-Esteem.’ She referred often to Thomas Moore’s ‘Care of the Soul,’ which I borrowed from the library after taking the former back and am read now. And truly beginning to understand what soul means to me, and feeling more and more that I’ve been in search of it, in awe of it, and in fear of its power and pain all my life.
It is impossible to define precisely what the soul is. Definition is an intellectual enterprise anyway; the soul prefers to imagine. We know intuitively that soul has to do with genuineness and depth, as when we say certain music has soul or a remarkable person is soulful.[…]
Tradition teaches that soul lies midway between understanding and unconsciousness, and that its instrument is neither the mind nor the body, but imagination.[…]
We have come to know soul only in its complaints: when it stirs, disturbed by neglect and abuse, and causes us to feel its pain.[…]
…without soul, whatever we find will be unsatisfying, for what we truly long for is the soul in each of these areas. Lacking that soulfulness, we attempt to gather these alluring satisfactions to us in great masses, thinking apparently that quantity will make up for lack of quality.[…]
Soul is the font of who we are, and yet it is far beyond our capacity to devise and to control. We can cultivate, tend, enjoy, and participate in the things of the soul, but we can’t outwit it or manage it or shape it to the designs of a willful ego.[…]
Storytelling is an excellent way of caring for the soul. It helps us see the themes that circle in our lives, the deep themes that tell the myths we live. It would take only a slight shift in emphasis in therapy to focus on the storytelling itself rather than its interpretation. —Thomas Moore, ‘Care of the Soul’
There were people, some people
Who broke the string for me
This place is now a sad place for me,
Because the string is broken. —Tad Williams, ‘Otherland: City of Golden Shadow’
I’ve said all my life that it’s easier to tell the truth in fiction. I’m coming to understand that it's also easier for me to hear and find and face and deeply know the truth through fiction and story—from Zen koans and Sufi teaching tales to fairy tales to video games with intricate storylines like ‘Final Fantasy VII.’ When I was a child stories were my escape from horrendous abuse and a nightmare world I could not leave. I read them and as soon as I could I started writing them for myself.
Looking back on stories I wrote when I was unaware, brainwashed and in denial about realities about myself and my world, very much not awake, I am astonished how my dreaming mind was telling myself on the page the story of my imprisonment and abuse.
bell hooks tells a heartbreaking story in ‘Rock My Soul’ about talking to an adolescent girl who had grown up in a poor black neighborhood with a life of violence and abuse and urging her to imagine something, and the girl insisting that she was unable to imagine. It dawned on bell hooks that the loss of the ability to imagine was one of the most deeply troubling and sorrowful symptoms of soul murder.
When my husband died, the grief destroyed me like a firestorm. Reality invaded my innocence and stripped it from me, burning everything away. My ability to tell myself stories to take myself out of the pain was nearly completely destroyed through the invasive pain that burned into every corner of me, that grief that became impacted through the interference and grief-vulturing of the people around me, aided by my desperate desire to get away from the all-encompassing pain by any means possible. Drugs and abusive relationships moved in with superficial attraction that became like swallowing bombs that went off inside me, shattering me in even deeper places.
For a long time now I have remembered how much better I felt when I could reliably write stories. And some people, many people, have broken the string for me, even while I struggled to tie it back together. I needed to come to some fundamental understandings about reality and about how people aren’t always as they seem, and understand where I come from and all I don’t know. I needed to wake up.
In the years since I pushed out all those toxic influences it’s been a frantic and painful search for truth. I kept hoping that stories would come back with it, and imagination. I would get glimmers and fragments, but like will o’ the wisps and fairy gold, when I’d grab for them, they’d vanish in my hands. (It didn’t help that when I was pleased enough to finish a story, people around me would want to read it, and then make it all about them and their opinions, effectively killing my sense of joy and accomplishment, not to mention trust and the relationship. But that’s another story and shall be told at another time.)
I’ve always been drawn to stories. I know they have the power to comfort and heal me. They have the capacity to help me face what I can’t face head-on, and feel feelings that I’m too terrified to feel directly for myself. I can identify with the main characters going through what I went through, and then feel for them and for me, and see a resolution in their stories that life has not really afforded me.
These are powerful things stories have done for us throughout history. Bessel van der Kolk, in ‘The Body Keeps the Score,’ talks about an American military unit putting on the ancient Greek play ‘Ajax’ by Sophocles and finding it a relevant psychodrama for themselves. It was written in a time when Greece was fighting everyone, and soldiers were constantly going off to war, killing, witnessing death, and being killed, with all the attendant pains, horrors, and PTSD. That the play speaks across thousands of years to today’s soldiers, with very different theologies and theories of the world they inhabit, with brains and wars complexified by the evolution of technology, says something about the power of that particular story to tap into its deep emotional themes. Its soul's refrain echoes as long as war's wounds are continually dealt and sustained.
Too, there is the problem of being a writer in that it tends to bring out the critic in a lot of normal people. There are a lot of unconscious and buried reasons for this, but also the kind of consumerist culture we live in assumes that writers write to make money, to please others. And I have had my own desires to write what I want, my own voice and soul and deep longings usurped by the overbearing opinions of people around me, including or maybe especially writing teachers. I learn much more from the stories of people who write what I want to write when they talk about how they wrote than when writers try to tell other writers how to write, as if they’re not really sure how they do the magic and so they parrot everything they’ve heard. No writer I love talks about their critique group when they tell of their writing process, but almost everyone insists you have to have one. (If you subscribe to this unquestioned belief, please go read ‘Why Critique Groups MUST DIE’ and at the very least ponder on the reality that story-by-committee only works in the context of television and movie studios where the writers are vetted, paid, and experts at this. And even then, a lot of the stories are meh.)
I write because I need it to survive. I write because it makes life worth living. I write to try to give my soul back to myself, including all its attendant darkness, in the form that is most satisfying and natural for me. There is no room in this for other people’s needs to take precedence and dictate, no matter how much the money. This is my lifeline. I write because it is who I am. And yet no one I talk to really gets that. Many people assume the point is money and fame and all their questions reveal their values and motivations, and misunderstandings: “Have you been published?” “How much does that pay?”
And if I do try clumsily to explain what it means to me, then they dismiss it as if it’s some kind of psychological masturbation, which deeply, deeply offends me. Because to me, writing because I’m passionate about it is a more robust motivation than writing in order to get external rewards. Thinking about the writers I love best, I would never want them (or have wanted them in the case of the dead ones) to write in order to please me. I want them to write what pleases them. If they do that, they’ll write a hell of a lot more (and do/did), and more easily, and take me places I might never have gone had I been at the helm.
Reality still intrudes so terrifyingly. Living homeless is traumatizing. Living in fear for my survival is traumatizing. It doesn’t help that I feel this deep inadequacy that I can’t write anyway, because of how many artists created brilliant works while living in poverty. And though I put so much stress on how my situation needs to improve in order for my life to improve in any way—and I do believe this is valid—I do worry that it’s been this way for so long that my imagination and soul won’t just suddenly show up on my doorstep along with the first theoretical disability check.
And in any case, while I’m in limbo, my soul is in so much pain I can hardly bear it. I know this has been what has driven me to all kinds of addiction and self-destruction and lashing out and withdrawing like an emotional sniper, the helplessness and impacted grief and anger of it. So many things I’ve read and learned and done through this process haven’t yet done more than reveal for brief moments the depth of damage within me, which I then flee from.
The longer this goes on the harder it seems sometimes to tolerate even those flashes, and I retreat more and more, terrified of the triggers that seem to be everywhere. I’m running from the bill that my soul is presenting me for a lifetime of this pain, and hiding like a fugitive from the law. It is hunting me down in every book I read, every song I hear, every hollow moment I play some idiotic game that has no life-enriching story to it, only an ever-hungry time devourer.
I feel this fakeness and emptiness often, in conversations with others, lacking any sort of trust and knowing how fragile I am right now, trying to keep things as light as possible. I feel it when I write on my blog, and express anger, and feel a little of the silence peel away, but hurt in my heart because I wish so much I could have written that as a story. I would have felt so much healing and joy, and joy in reading it over as I still read over and over my old stories.
I feel it when I can’t manage to imagine anything better, or imagine ever feeling joy or freedom again.
Just Keep Swimming
The good news is, this pain, honored properly and worked through, may help bring me back in to my soul.
…entering into [melancholy’s] mood and thoughts can be deeply satisfying. …feelings of emptiness, the loss of familiar understandings and structures in life, and the vanishing of enthusiasm, even though they seem negative, are elements that can be appropriated and used to give life fresh imagination.[…]
…the soul is made: it is the product of work and inventive effort.[…]
…during bouts of melancholy the outer life may look empty, but at the same time inner work may be taking place at full speed.[…]
…the need for isolation, the coagulation of fantasy, the distilling of memory, and accommodation with death…[…]
…provide emotional space for such feelings, without trying to change them or interpret them.[…]
…power pours in when we sustain the feeling of emptiness and withstand temptations to fill it prematurely. We have to contain the void. Too often we lose this pregnant emptiness by reaching for substitutes for power. A tolerance of weakness, you might say, is a prerequisite for the discovery of power, for any exercise of strength motivated by avoidance of weakness is not genuine power. The soul has no room in which to present itself if we continually fill all the gaps with bogus activities.
I knew a young man who wanted to be a writer. Something in him urged him to travel and to live the Bohemian life, but he looked around and saw all his peers going to school. So he decided to overrule his desire for travel and take some college courses. Not surprisingly, he flunked out, and then went on a long trip. It is easy to overlook the obvious, persistent indications of soul, in this case the fantasies and longings for travel, and instead try to manufacture power with demanding and expensive efforts. —Thomas Moore, ‘Care of the Soul’
It breaks my heart to realize that the economic deprivation of my past and present does not simply limit me in terms of what I can buy and what resources I have access to. It also limits who I can love and who can love me. Who I can form relationships with, and who is willing to form relationships with me. How much I feel safe opening myself to others, and how much my openness is accepted and welcomed. My class, my financial status, insinuates itself into every aspect of every relationship I have- and if it is not or cannot be dealt with appropriately there, that relationship cannot exist.[…]
…for my sanity and security, for the sake of an emotionally heathy relationship, for the mere fact of wanting to be with someone who treats me as a human being with valid and real experiences, my close relationships have to be very carefully formed.
When I say that class is part of my life in every moment and in every way, this is what I mean. I cannot even do something so basic to the human experience as to love someone, to befriend someone, to form a relationship of some kind with another human being, without considering how class will play into it. And this is why awareness of class and classism are so important to me. —classragespeaks.tumblr.com, ‘On Love and Money’
Imagine, if You Will
Can you imagine a life where every single person you knew and met and interacted with was more economically privileged than you?
Can you imagine the frustration of being invited places you can’t afford, and not being able to participate in basic social interactions because of where they hang out, and how much it costs for you to get there? Imagine they think nothing of cover charges and door fees that are more than you make in a month, and just blankly do not understand or remember your situation—and when you remind them of it, they look at you with pity, like you’re some stray animal with ragged fur.
Imagine for a moment that all their advice comes from a place of assuming the kind of social connections and Ivy-League educations they all take for granted, and being able to rely on support from rich relatives. Imagine that they may have heard of people in your economic position, these ‘middle-class’ folk, but they’re most often either the butt of jokes or held up as an example of ‘other have it worse than me, so I should cheer up.’ Imagine that they have never really been the places you go for medical care and food and don’t understand how they work, or have all kinds of misunderstandings.
Imagine that they’ve been told since they were born by everyone and everything around them that if middle-class people worked harder, weren’t so lazy and negative and unmotivated, they’d be rich like them. Imagine these super-rich people being told that they can do whatever they want, and having that be true, and taking it for granted that everyone has the essential freedoms to jet around the globe on a whim or take a year off to study with a master painter for a hobby. Imagine they’ve been told that they are succeeding because they’re working so hard through all of this, while never having to worry about cleaning their enormous houses or doing any chores, even as a child.
Imagine that at first, you take their offers to pay for you. But as you get older you start to realize that your relationships with them change when this happens. They give you unsolicited advice more freely, expect more explanations, ask more favors, and at the same time you feel more uncomfortable asking for favors, or setting boundaries with them. If you try to talk to them about this behavior they get offended and sometimes pull away, or laugh at you for being so sensitive and paranoid.
In fact, any conversation you try to have about this difference risks offending them seriously. And when they get offended, they get condescending and personal, and pass judgment on how you talk and your feelings and how you’re only hurting yourself.
Imagine gradually talking less and less about your everyday struggles, meanwhile listening to their grumbles about trying to find good nannies for their children or yacht repairs, and thinking about how the emergency replacement of your HVAC cost you your vacation this year. Or how you worry about the rumors at work that a bigger company is in talks to buy yours, and this would result in restructuring, cutbacks, maybe even shutting down your entire office and either moving people across the country to keep their jobs or letting them go, and what it would mean to your kids to have to change schools, how your spouse would feel about quitting his or her lower-paying job and the stress of finding a new one and the possibility of resentment straining your relationship.
You know from past experiences when you talk about these problems that you’ll get Those Looks, those uncomfortable expressions, and sometimes that nails-on-a-chalkboard condescending advice of the ‘let them eat cake’ variety that just rubs your nose in the gap between your experiences that you never forget and they never remember.
Imagine longing to have friendships where you can just be yourself, and maybe disassociating yourself from a few and trying new social groups and meeting about your interests, but finding that nowhere—nowhere—is there anyone even remotely close to your economic status to hang out with. They all live somewhere far distant to you, and don’t have time and energy for socializing, let’s say. For whatever reason. And you suspect you’ve taken on the aspects and mannerisms, the veneer of rich people from hanging out with them all your life, and would bring to people more your class the same discomfort and resentment you feel toward them.
Not one thing or another, and terribly lonely. But knowing that every single time you make friends, there’s a huge difference that affects your whole life. That all your stresses and worries and fears and feelings might be looked down on, or grounds for stigma or judgment. And you feel yourself constantly having to prove your worth and value and yet still being treated paternalistically, or like people’s Good Deed or Charity Work, like friendship with you is an enormous favor they’re granting you. You don’t know how much of that is just your own jaded point of view from truly exploitive and controlling past relationships, your own wounds, or the reality that is so easy to deny for rich people that keeps hitting you in the face like a rotten dead fish.
Liar Until Proven Innocent
I have absolutely no income, in the cold terrifying limbo void of two years of fighting to try to get Social Security Disability Income. I’m waiting on a hearing date, and it’s completely out of my hands. I have done everything I can to get an early judgment. Meanwhile my symptoms are worsening under increasing stress and just how long I’ve been putting up with this.
The last of my dead husband’s life insurance is gone. The house is gone. I’m down to the last of my Roth IRA, cashed out at heavy expense. I’m selling off all the rest of my possessions worth anything. I’m silently begging the fates not to do anything to my car, because I live twenty miles from the nearest public transportation.
I’m squatting in an abandoned RV, which will probably never move again, has no insulation and no heat. It’s not meant to be lived in in the winter. And I have to dump and flush the wastewater tanks weekly. Many of my things are in hard sealed plastic containers because there’s a constant battle to keep the mice at bay, and still I regularly find their droppings on my plates, in my underwear drawer and shower, colored electric turquoise from the poison in the bait traps.
Another thing you don’t know what you’ve got ’till it’s gone is financial privacy. I have to disclose my income and financial statements to get health care, to get food. On top of that, everything I own, have, buy, wear is scrutinized and questioned by unthinking middle-class people when I start to come out about my poverty—and the implication is that I’m lying. I can’t be poor because I don’t ‘look’ poor.
If you could do just one thing for people in pain that would be more supportive, it’s this: don’t question choices you don’t have to live with unless your opinion is specifically asked.
For one thing, I have a lot fewer choices than you do. A lot. And most of them are between bad alternatives, and I have to pay the price. There’s more than one kind of price, too. It’s not all just a numbers game. If you’ve ever had to deal with people and situations that were just not nasty for the sake of saving a few dimes, you know that sometimes you pay extra to not put up with that crap—well, often I not only don’t have that choic, I’m dealing with that nastiness all the time. It’s little wonder I’m prickly as a porcupine all the time.
I resent having to explain all my choices and the things I own, being treated as if I might be lying. That’s not a good basis for the trust that’s essential to a friendship. Whether you mean it or not. I resent having to explain them to people in a position to deny me food or health care on a regular basis—talk about terrifying. I resent that feeling of paranoia about everything I wear, the choice I have to make. Passing for middle-class means safety for me. It means dressing a little better because I bought nicer-looking clothes at Goodwill, and feeling better about myself, which when I’m in this situation where I’m on the bottom rung, anywhere I can get a little self-esteem I’ll take it.It also means dirty looks from people, and assumptions, and being treated like a liar when I try to get help or support. Sometimes all my choices are bad.
Sometimes I spend a little—very little—to get something nice for myself to combat and maybe push away the constant feeling of deprivation and running out, and I sure know how to get a lot of pleasure out of $5. Even if I always feel a lot of shame and guilt and terror about the least indulgence, especially when something essential breaks afterward, something I can’t legitimately do without. Like I’m drilling holes in the bottom of a sinking boat even if I’m just taking myself to an art museum, for fuck’s sake, to see an exhibition about a photographer living in a homeless tent community in the Pacific Northwest. Or paying a little for a website that gives me a platform and voice that are better for my long-term mental health and self-esteem than a shelf of self-help and a pharmacy of psychoactive chemicals.
I’m paranoid about sharing these pleasures with other people, even here in this way with one cool remove to protect me from spring-loaded questions that undermine a sense of belief in me. I feel shame and hurt that both my struggles and my pleasures are problematic conversations to have with people who don’t get it. I guess some part of me hopes that if I write about it enough I’ll find a way to explain it that will flick on the light in people’s eyes that doesn’t take more than a few seconds, and doesn’t make me feel suspected of lying or invalidated.
I know, too, that all this is baggage that gets in my way, too, that overshadows how I treat other people I just met. That my guardedness could be taken personally, too—that the suspicions and protectiveness I can’t afford to go without may make other people feel like I don’t trust them and that it’s out of proportion to who they are. I hate that, but again, it’s a choice between two bad choices. I can’t afford to not be extremely careful with new people, and it can feel a bit like a Mexican standoff, and leave the other person hurt and bewildered. Because just talking about the class difference can lead to problems just as not talking about it can, but much quicker. And most of the time I just don’t have the energy, which is another good reason for ‘passing.’
I’m sick of friendships that cost the earth of me, where I give the kind of validation and support I’m longing for, and hearing my praises sung, and being told how ‘strong’ I am, but when I show my weakness and hurt I’m chastised (condescendingly) out of it, as if my feelings are some sort of mistake or moral flaw. Wouldn’t that drive you crazy? If you were expected to always be the very best version of yourself? That’s not a friendship, that’s an unpaid job.
Even other disabled people I’ve met who get disability income (or have families supporting them) don’t have the same experience I have, as I learned recently when once again a support group tanked for me because everyone there has some form of income or support and I don’t. Not fantastic income, but they’re not in the space where I’ve been for the last ten years. And that’s what I need support for. I’ve watched the money run out as I struggled and struggled and struggled to work over and over again and failed and failed, and felt like a failure, like I was worthless and valueless, like I was lazy, good for nothing. It was shaming and humiliating to finally have to accept the heartbreaking reality that I’m too disabled to work, and increasingly so. After all these painful, isolating years, I applied for Social Security Disability Income.
They denied me, again and again and again. This speaks to all those insecurities and shames and whispers of invalidation in my head that I’m just lazy, that I’m not trying hard enough. I’m fighting both myself and the Office of Disability Adjudication and Review—hell, even our entire culture with its extreme mental pictures of what poverty and disability look like. I’m considered a liar until proven innocent by an institution of people with hearts hardened by government work and suspicion, with a vested interest and maybe even a mandate to keep me from ever getting income.
No one I have ever met is without income, without a safety net, without relatives and friends to offer support, and has been on their own without sufficient income to sustain themselves for as long as I have. Just as long-term abuse tends to leave a different type of PTSD (Complex PTSD) than one single assault, the longer this traumatic situation goes on, the more deep its mark on me.
I think of stories of people who lived through the Great Depression who for the rest of their lives hoarded soap slivers (and everything else). I think about Audrey Hepburn, who spoke of how her childhood living poor and in fear in Holland during World War Two learned that hunger was something she could just overcome through willpower, and going her whole life looking that thin. And waiting until too late to get medical treatment for pain inside her that she was just enduring.
Even people who’ve been through hard financial times seem to have shook the dust off their feet, and fall into this same relationship pattern with me, an unequal relationship.
No one I meet seems to understand the complexity of a cross-class friendship, and there’s an expectation that I’m to accommodate and care for their feelings in any conflict over this subject that is uncomfortable for them, while burying and dismissing my own fears and resentments as threatening to them.
Emotional Labor, Educational Labor
Just recently I was introduced to the concept of ‘emotional labor,’ particularly in the context of friendships but also in the workplace, where (possibly because of stereotypes about your identified gender) you’re expected to do the bulk of the emotional work in your friendships, particularly with people of another gender. It’s just always assumed and it’s always been that way.
I find that in relationships with people who are more economically privileged—and even more so if they’re not disabled—if I have problems relating to them because of these things, it’s expected that I’m supposed to explain it to them in assertive I-statement language that caters to their feelings and avoids any talk of that four-letter word Privilege or in any way makes them uncomfortable. I’m expected to be patient and explain, breaking it down more and more, until I realize this person really does not want to hear me, and feeling resentful and hurt that I wasted all this time and effort—AGAIN.
I’m not just having to educate myself, I’m having to educate the people around me, who are so far behind me in understanding these things I’ve been studying about myself for years in search of solace. Eventually dropping consumption of news and politics and almost all reading and video-watching for entertainment in order to focus on learning what I have to in order to prioritize my survival.
And still I find myself having to convince people who are really uncomfortable with even discussing my reality, and feeling resentful, because at the end of the conversation they go back to their more economically privileged life and I go back to the 24/7 nightmare that is my fight to try to live as comfortably as I can afford with my limited financial, physical, and psychological resources.
I can’t have shallow acquaintanceships anymore. I can’t waste the energy. And the questions people ask when they first meet me all make sense and are surface, shallow information about someone—if they’re not me. “Where do you live?” “What do you do for a living?” “Is your family around here?”
People take for granted how much getting to know someone, socializing, these socialized systemic ways of relating, have an undercurrent of subtle classism to them. They’re made for and by people who aren’t like me, through years of unquestioned practice. These questions, as with any personal questions, touch on a life that is magnificently packed with pain and anger and suffering that they don’t want to hear about right out of the box. TMI, right? Feels like emotional dumping just to hear a sliver of my life, and instantly I get associated with discomfort and forced intimacy that they don’t want to match. The kind of people who are attracted to me are the people who like to have friendships with someone who has such pervasive problems that they look saintly by comparison, and they’re never wrong, never the problem. I’m the scapegoat. And I can also be the ego prop for when this person wants to feel good about themselves by telling me what to do. I’ve been jaded by too many of this kind of relationship. I’m wary of anyone who’s too interested in me when they hear about my circumstances or past, and is quick to tell me about me.
But I can’t risk hiding and getting rejected later when I find out that any new person, like most, isn’t really equipped with the skills and knowledge and psychological bandwidth to have a cross-class friendship. Even if I’m doing most of the labor, as I’m used to, at some point, the other person really has to show up and match me, and I don’t mean by picking up the tab or helping me out financially or offering me pity or charity.
It would be worth a thousand lunch tabs, worth all the fivers in the WORLD to me if just once, just once, I met someone who could do the stuff that money can’t buy. Who could consistently practice humility before my challenges, and believe me, always believe me, and listen, and not try to fix me or make me feel better, nor exaggerate how awful I have it.
The Three Magic Qualities of Support
I’m lucky I have found an online support group, not for this (because let’s face it, there aren’t support groups for poverty, poor people can’t afford the time and energy even if they’re not disabled) but for one of my other problems in a problematic life. There’s magic there that isn’t even in other online support forums. When I was briefly made a moderator there, I got to go behind the curtain and find out the magic ingredients, why this works where every other support group and most friendships fail for me.
I wondered if they’d even talk about it, but I knew there was something to learn. And learn I did, and it took my breath away.
One thing is, there’s not a sense of hierarchy. All the moderators are posting members, the people who hang out there enough that they can take the time to moderate, and are selected by other moderators, who know through years of intuition and practice who is good moderator material.
But the main ingredients were three qualities that were discussed as essential to being moderators. Everyone was invited to share their experiences of when they feel they’ve experienced and given these with others. Through everyone’s sharing of what they knew and felt about these things, the words became more than buzzwords, they became values, and have stayed with me ever since as the things I want and cherish the most in a friend or support person.
Are you ready? ’Cause they’re awesome.
Sounds simple, right?
But we have so many wrongheaded ideas about each of them, like mistaking empathy for sympathy, and idiot compassion, and thinking of humility as a weakness, as submissiveness, the image of being prostrate before another person. I’m planning an upcoming post to tackle the fact that genuine humility is a sign of strength, because it is, and I’ve seen it, most especially in every TED speaker who gets up and talks about their failures.
I work through a lot of things in writing. Part of why I write is to understand, to unpack what I’m thinking. But I think this was essential to think out loud, because it is such a huge issue in how I relate to others at all.
I haven’t had many real friendships with people strong enough to practice the deep levels of empathy, compassion, and humility necessary for a cross-class relationship, for any relationship with someone less privileged than you. Because of that I don’t have a lot of experience with having the tough conversations about this. Most of what I learned about tough conversations was from all the passive-aggressive asshaberdashers and abusers I grew up with (and subsequently fell into friendships and communities with, since for most of my life I didn’t know there was anything better out there).
I have a lot of fear around these conversations. Justifiable, because a lot of people with privilege don’t like being reminded of it, particularly if they’re also oppressed in some other way. Which most of us are, unless you’re a rich white straight cisgendered male American. I get it. I lived with blinkers on for years and for a lot of that time would have been very uncomfortable and ashamed if someone in a wheelchair, a person of color, an LGBTQIA person brought up my privilege point-blank and started talking about the harsh realities they live with. Or I would have had pity, or sympathy, or idiot compassion, and maybe made stupid comparisons to my own privileged distress or stupid advice. And I did both these for years, and I know what it’s like to be in that sleepy fog of denial.
But it’s not compassionate to tiptoe around and let people sleep in their ignorance and habitual microaggressions. That’s not at all how social change happens. Yes, it’s annoying and painful to us people with unexamined power, all of us—who subsequently spread our pain around with a big privileged shovel when it comes because we’re used to being catered to and left to sleep.
The best thing any ally or friend can do is the first level of validation. Know how to shut up and listen. Don’t make it about you. Don’t force your discomfort with the issue to derail their issue. Get comfortable with discomfort.
Chances are, if I’m comfortable in this world, it’s because of some privilege that someone else doesn’t have that allowed me opportunities and power to make myself comfortable. If I’m comfortable, I’m most likely in denial or comfortably chemically numb. I think back with a critical, interested mind on the days when I was asleep, and what I felt like when I did the things that absolutely piss me off in potential friends these days. Mostly what I felt was insecurity and absolutely overwhelming fear, which had been going off like a siren so long I was deaf to it.
So I get it. I get where it’s coming from. I feel you. I’ve been there.
But I’m not going to let you sleep while you’re lying on me and others and causing us pain. It’s time to wake up, sweetie. You’re late for self-education.
I mean it. Five more minutes and I’m getting the ice cubes.
Addendum about envy: I read this after posting and it seemed relevant
I once knew a woman who suffered for years from excruciating, exquisite, unrelenting envy. She worked hard all day at her factory job, trying to make her life better, and then she hid out at night in her house. She couldn’t bear to behold what full lives people around her were living. She felt unconsolably lonely and utterly miserable. Over and over she described her friends’ happiness in great detail. She knew everything good that happened to them. Whenever word came of some new success or boon to any of her friends, she went into shock, another nail pounded into the chest of envious thoughts she carried with her at all times. Her friends had money, good families, fulfilling work, companionship, and great sex. Listening to her you got the impression that the entire world was blissfully happy, while she alone bore the burden of loneliness and poverty. […] Her envy mirrored her preoccupation with the lives of others and the neglect of her own.[…]
A person talking about envy is like a religious missionary trying to win converts. Behind the stories of envy is the message: Aren’t you as outraged as I am?[…]
…by reciting this list of plagues at every opportunity, she was rationalizing her state. These convincing arguments were part of her complex. They kept her envy oiled and well polished.
Ironically, this woman’s angry explanations for her misfortune distracted her from feeling the pain of her past. Symptoms are often obviously painful, but at the same time they may protect against a deeper pain associated with awareness and facing the fundamental realities of fate. It was as though her envy sucked all that pain into itself and in an odd way kept her from owning her past.[…]
If we avoid the compensatory move into support and positive thinking, we can learn instead to honor the symptom and let it guide us in close care of the soul. If in envy the person wishes life were better, then maybe it’s a good idea to feel that emptiness deeply. Wishes can be fluffy instruments of repression, turning attention to unrealistic and superficial possibilities as a defense against the void that is so painful. It was fairly clear that what this woman was lacking was the capacity to feel her own sense of desolation and emptiness. —Excerpts from Thomas Moore’s ‘Care of the Soul’
I don’t believe this invalidates my anger and desire for a better life for myself, nor the demands that classism and ableism be addressed when they shows up in my life.
But I do believe that the lady (me) doth protest with more venom than could be reasonably explained away by years of repression, silence, not standing up for myself, and petitioning for respect and being taken seriously and not getting it. And I really felt this passage deeply. I recognized how caustic my blog is to potential readers, how personal and angry, unleavened by self-awareness.
I think both can be true—that there’s validity to my feelings of unfairness, but my obsession with this persecution is flagging it as an area where my soul needs more care, an anger to block myself from feeling the despair of the child I was, the loss of the life I would lead with my husband when he died, the loss of my innocence as I began to open to awareness of what was done to me and my own limitations.
That child feels so alarmingly vulnerable, and was so alarmingly vulnerable, to all manner of violations. And I need my righteous anger to fight for and protect that child—but I also need to reclaim her despair, because as long as I don’t it has a lot of power over me and my relationship to my environment and every other human being. Whatever I bury grows, I know that.
I just hate digging up that stuff. It’s all rotten and wormy and stinks to Valhalla.
Little by little, though. Little by little.
Don’t tell me what to feel, think, say, do. This isn’t just a pet peeve, this is a deal-breaker with me. The only time this is okay is if I’m doing something that directly affects you negatively.
I’m all for policing language that’s inherently disrespectful to underprivileged groups. Especially self-policing, and edumacting oneself what language is ableist, fat-shaming, xenophobic, etc. I’m all for being more sensitive and respectful. I’m also all for being able to set verbal boundaries, and to communicate to each other when certain words or subjects are personally triggering to us. This is something I struggle to do with other people.
But I’ve noticed that, particularly among the more privileged, there’s a fragility and a sense of self-righteousness that lends itself to policing my words with the air that it’s for my own good and this person knows more than me, rather than owning their discomfort and setting a boundary. In other words, I’ve experienced lots of white middle-class people condescendingly correcting my words as an almost compulsive, mindless habit.
This isn’t just annoying, it’s invalidating and disrespectful.
I had this friend who did this so constantly that eventually there was really nothing I could say to him. After a while I noticed whenever I had a thought I wanted to share I was second-guessing every word with fear and most of the time staying silent. When there’s fear to communicate in a friendship, it’s not a friendship to me.
This ‘friend’ also said he ‘didn’t believe’ in The Spoon Theory. I have a problem about the word ‘theory’ in its title, because it’s not a theory, it’s a metaphor for discussing one’s limits and internal resources with someone else. Basically he was saying he didn’t believe in other people’s authority in being the judge of their own limits and needs, because his were different—and this is the whole reason the original metaphor was made to begin with, to point out that we don’t all have the same limits and needs, and we can’t judge others’ based on our own.
But that’s another story and shall be told at another time.
Where Privilege Rears its Ugly Invisible Head
Word-policing can shut down conversations with people who are not like us and create elitist rules about what we will and will not listen to. Which is a choice. It’s a choice that limits our potential for learning and our comfort zones. And if, say, I’m more privileged than the person I’m word-policing, it’s oppression. It may be denial due to my discomfort with the differences between us. But it’s projecting my discomfort onto them and then trying to control their language when what I need to control is what I choose to do in response to my discomfort, and how I go about dealing with it with regards to my relations with this other person.
When it comes to policing a person’s language about their own feelings, experiences, and thoughts about what happened to them, it’s more about the discomfort of the person policing, and unwillingness to listen, than the person whose words are being pulled over to the curb and asked if they know how fast they were speechifying.
Condescendingly trying to ‘save’ someone from the consequences of their feelings, thoughts, and words is also idiotic. Thoughts, feelings, and how we describe our experiences do not create reality, nor does our awareness. That’s magical thinking. It’s surprising how hard it is for people to let go of that superstition, and even make a killing writing inherently classist books, teaching and taking classes using that as a fundamental truth and basing our whole approach to life on it.
Also underlying this is an unconscious judgment about these things and their consequences which don’t necessarily reflect the reality of the speaker. Remember that I am the best judge about what is true and what is good for me, and you are only the best judge of what is best for you. This is a remind of where we each end and others begin. While you, dear reader, may personally believe that words and thoughts and feelings have these consequences in and of themselves and need to be policed—you’re not the expert on anyone but you and your pets. And your desk. You are definitely the expert on your desk.
You don’t live with the results of how I feel and think and speak about what I experience, any more than I live with the results of your feelings and thoughts. It’s what we choose to do in response to our feelings and thoughts that matter.
Word choice does matter, it really does, when it comes to words that disrespect and shut down people who are less privileged to us in some ways. But word policing also does this—and I notice it’s super-pervasive the more privileged and in denial people are.
There are people out there who have lived through and are living through realities we don’t understand, that challenge your comfort zone and what you want to believe about the world. It can be hard to hear.
But remember that no matter how hard it is to hear, it’s harder still to live with in silence.
But Wait! There’s Hope! …or: Four Super-Easy Steps and Two Fucking Hard Ones to Change Any Behavior
If you have this habit, the way to change it is the same way to change any habit.
- Notice, without shame or self-blame, when you’re doing it.
- Ask yourself what’s going on with you, what’s underneath that. Notice if there are some times or some people you’re more prone to doing it with. Gather information like a researcher.
- Figure out what this behavior is meeting for you. Yes, it has some kind of desirable effect for you, otherwise you wouldn’t have picked up this habit. Again, no shame, just figure it out.
- Find a better choice to meet that need. You need something to replace it with, to redirect the impulse rather than trying to stop it. In learning self defense I learned it’s way less effort and risk to redirect a strike than to try to fully stop it, so blocks are about nudging the strike a little out of the way. For me it’s a great metaphor for the momentum that habits have.
- Make any positive change toward that better choice—including shifts in your circumstances. Maybe there are certain times and places where it’s more likely to happen, and you can be more aware or be there less. Keep making small shifts consistently.
- When you do the thing you’re trying to change, skip the shame. Remember there’s always a chance you’ll do it without thinking, especially if you’re stressed or tired or running on automatic. Learn from it if you can, re-commit to change, and repeat steps 5-6 as necessary.
Part of why I have this blog is I have a lot of crammed-in words I need to unpack, and be out about my invisible disability, my poverty, my invisible homelessness, my legal battle to get benefits and a safe and stable basic-needs life.
I realize that I have a lot of anger in me. And I want it to not all be about anger. I want to share the good stuff too, the positives or ‘pozzies.’ These will mainly be the things I’m reading and watching that feed my soul.
Eventually I want to figure out how to do a couple of sidebars, one that links to posts in a way I know will allow old posts to be accessible (or at least an archive -- I have to learn through doing, so be patient, fabulous readers). And the other sidebar will be to the sites that have provided me with the most validation and learning and inspiration and the very language I need to address the discomfort I’ve had with certain things that are just not kosher about everyday life and interpersonal interaction and oppression and everyday discrimination and relational aggression.
For now, I’m going to signal-boost my favorites right now.
Francesca Ramsey and Kat Blaque
I have been marathoning the videos from their respective YouTube channels, chescaleigh and Kat Blaque (Francesca Ramsey also does a lot of other stuff, in particular the often hilarious MTV Decoded; Kat Blaque also does Blaque Vlogs). It’s painful to think of choosing just one or two to share here to introduce these amazing, strong, courageous YouTubers from whom I have learned so much. But I’m going to do it because I want everyone to share in the awesome.
I have kind of an issue with the overrepresentation of older white male cisgendered economically privileged people in philosophy. I think that the generalization of personal experience is something that the more privileged one is, the more one does it. I think it’s a dangerous move into ideology territory. I also think sometimes it winds up being a kind of fantasy world of concepts from people who never actually wash a damn dish. Similarly, I’ve been looking at a lot of scientific and self-help books and who they’re written by and for and the unconscious assumptions beneath them, and I keep that in mind whenever I notice another white man on the ‘about the author’ page and realize he may be completely blinkered to his own lack of awareness.
That being said, after reading bell hooks’s ‘Rock My Soul: Black People and Self-Esteem’ I was led by some of her quotations to Thomas Moore’s ‘Care of the Soul.’ Recovering from cult abuse has been a rocky road for me. I reject religion and its sometimes really ugly cousin spirituality (lots more on that later). But atheist groups were problematic for me too. Something was missing, and that something was the feeling I have about the arts and their capacity to communicate, connect, enrich, and create immortality for parts of oneself. Reading and writing fiction as a child was my solace, my escape, but also my sacred space that was all mine. To this day I need fiction like a drug. Reading these writers’ description about soul and soulfulness gave a name to what I seek in art, in my life, things I thought I was alone in valuing.
What I particularly like about ‘Care of the Soul’ is its analysis and application of mythology. Mythology is important to me. In rejecting everything about where I came from, remaking my name and life entirely, I’ve wanted to draw on the things that have meaning for me to construct a soulful mythology that supports and nurtures me. It’s damn hard to do with the Sword of Damocles over my head, wondering will-I-won’t-I-get-SSDI-and-survive.
I do what I can. Books like this are supportive of me.
On the fiction front, I am loving everything by Helen Oyeyemi. I have given her entire days, in soulful supplication to her pages and words.
And man, do I love my local public library.
Websites and Posts
Everyday Feminism. I wish I could download the entire website into my mind, like in The Matrix. They have amazing articles on disability and class that are particularly relevant to my situation, but I really like being able to learn and educate myself about other oppressed identities and intersectionality to unpack and understand my own privilege and use it to practice better allyship for those who are different to me.
As a survivor of homeschool abuse I’ve long been a subscriber to the Coalition for Responsible Home Education’s newsletter. Many people don’t even realize, hear about, or know this is an issue. And it’s an uncomfortable and difficult one. In April they posted a fantastic article about Why We Have to Talk About Homeschooling and Child Abuse.
In domestic abuse a key tactic is isolation of the victim, through cutting them off from friends and family and communities and sometimes even moving out of state or getting them to leave their jobs. When this is done to children, they have no legal rights and don’t have the same freedoms like driver’s licenses or the ability to go to a women’s shelter, or even know about what rights they do have or any information the adults ‘homeschooling’ them do not want them to have access to. Or people. It makes it much easier to hide any abuse going on. And reporting child abuse or neglect frequently comes to nothing for the child.
As a survivor I know how uncomfortable people are with thoughts and discussions about child abuse. Abuse thrives in secret. This is why reading and having conversations and sharing experiences is so crucial, no matter how uncomfortable it makes people, no matter the retaliations and attempts at silencing and derailing. These conversations are essential to the future safety and survival of the vulnerable and endangered targets of today and tomorrow.
I’ve shared this with you. What will you do? Will you learn about what might make you uncomfortable? It might change your world view. It might unsettle you. But the good news is, you can use that discomfort to do something about it—share with others, support the causes that are working to end it. Let your discomfort fuel action, I’ve found it’s the best thing.
The problem is I got a lot of brains but no polish
I gotta holler just to be heard
With every word, I drop knowledge!
I’m a diamond in the rough, a shiny piece of coal
Tryin’ to reach my goal. —‘My Shot,’ Lin-Manuel Miranda, ‘Hamilton: the Musical’
(IMPORTANT NOTE: I do not speak for all poor people. We are wildly diverse since being poor hits people regardless of race, gender, sexuality, nationality, ability, you name it. It’s entirely possible I may offend other poor people whose circumstances and experiences differ from mine and those of others I have read, with whose words I have found resonance and illumination of common themes. Among other things, the fact that we have the time and energy and words to write already means we’re privileged in ways that many poor people aren’t. I happen to be disabled in a way that means I have time to read and write, while it also means I can’t hold a job and have no income at present, fighting for disability income for two years. Privilege isn’t a thing you have or don’t—it’s a continuum, read this for more.)
Classism is the little black dress of discrimination—it never goes out of style.
In fact, because many of us don’t have leisure time or cars, and can’t afford where you, economically privileged person, live and shop and eat and play and socialize even if we could get there on the bus lines with all the attendant extra time that takes, most of your time is spent in a glass clubhouse with the ladder pulled up you didn’t even have to build, and never even see it’s there.
You don’t have to do a damn thing to exclude poor people. The whole world is built that way, in ways both big and little, every day. And it’s not like a little ramp would fix it. We lack money, time, transportation, information, resources to even show up. You’d have to go out of your way just to see us in our crazy, scary zoos.
And another thing: stop using us to feel good about yourselves through selfishly-motivated charity. Stop preying on our neediness to get that special warm glow inside of Doing a Good Deed on the one day a year you volunteer at a soup kitchen. Stop expecting us to stroke your ego by praising you as a hero with excess of gratitude, knowing you’re going home to your basic needs being met and tomorrow we’ll still be in hell.
Don’t get me wrong, you should continue to volunteer and donate, but don’t do it just to feel good about yourself and don’t expect us to take care of your need to feel all warm inside or give you cookies for being such a good little helper. This is one thing that really pisses me off in various coping skills and self-help material when it suggests volunteering in order to feel better. Examine your motivations. Take a good look at why you’re doing this, and check your needs at the door. (Also do at least a five-minute Google before you write a check and make DAMN sure you know the details of who’s getting that money and what is being done with it.)
You’re not even breaking a sweat, for maybe these few hours a year; we’re fighting tooth and nail year round. Plus for us to ask for and accept help is risky. It shows our weakness and vulnerability to people stronger than us, and we’ve all had bad experiences with being taken advantage of and loan-sharked. It can be frightening and humiliating for us. Especially with your insensitivity of rubbing our noses in how good it is of you to come down here and assist us poor wretched creatures.
You can respect someone you’re helping (mainly by remembering you are not better than us), but a charity relationship is not an equal one. Like teaching, pity, therapy, and parenting, it puts the recipient in a one-down, supplicant position. It’s important to remember that there is power in the situation. You could revoke what you’re giving at the least provocation, considering it an inconvenience to you. Your inconvenience is our basic need.
And if the only time you ever interact with the poor is in charitable situations, you get in the habit of these roles of expecting yourself to be the ‘fixer’ and us to be the grateful rescued by you, when frequently you show your blatant ignorance of the realities we live with every day and insult our intelligence by just assuming, by virtue of your position, that you’re actually smarter than us.
Let me tell you something.
Poor people know a lot about coping with the unimaginable. You may have been there at one time, but we’re still going through it. Our lives are in mild danger all the time. What if we lose our benefits or jobs? Or health care? What if something breaks or goes wrong that’s essential to survival and we can’t afford to replace it? And we know this, all the time. We know about pressure, oh my yes, yes we do. We may not always have the leisure time and energy and resources and influence to sit down and tell you or write it out, but we do have deep in-the-bone knowing of harsh realities that you don’t.
Ignorance is also a privilege we don’t have. We can’t turn off the nightmare, so don’t judge what we do to numb the pain. How dare you, really, judge our choices from your position outside our hells? How dare you assume we’re doing this to ourselves, that if we just worked harder we could be privileged as you?
Most of us work harder than you do just to survive—disabled and abled alike. We are already doing all we can and have even stretched the limits of human capability, endurance, pain tolerance, and survival.I’m full-time taking care of a disabled person without any kind of family, friends, community, or other support besides food stamps and erratic mental health support—and I’m the disabled person, so sometimes I can’t take care of myself adequately. You do not know what this is like.
We’re also creative in ways you can’t imagine. We find creative alternatives to things you can just buy, creative solutions to problems you can pay your way out of or never even encounter. And we have a lot of life skills you don’t from having to do for ourselves services we can’t afford to pay someone else. We’re fantastic at figuring shit out as we go, and adapting.
I value the critical thinking of someone who has weathered hard times more than any fistful of advanced degrees you’ve got, any day. We learn the hard way what’s not really true, and we question more. We don’t assimilate, we learn and adapt and keep surviving, and naïveté dies off quickly in the crucible.
We’re pretty damn good at living in the moment—sometimes to the extreme of not thinking past tomorrow, and just surviving one more day—and appreciating more simple pleasures that you’re bored with.
And I think we have better definitions of worth and value than you consume and create in this culture. We know what’s intrinsically valuable. We don’t necessarily get so caught up in appearances and perfection and take the time to look closer, although sometimes we’re so full of shame and misery we can’t feel any pleasure or make that judgment call, and I’d like to see you do better, honestly.
I know you’re afraid of becoming like us, so afraid you can’t even admit it to yourself. You cling to your families and jobs and bank accounts and investments and assets and 401ks and your degrees and your social networks and professional networks and your possessions and all your plans and beliefs and you tell yourself that no matter what happens, you’ll always land on your feet. And never be like those poor unfortunate souls with cardboard signs on street corners.
And besides, you got where you are through all your own efforts, right? You got what you deserve, and if these people applied themselves, they could too. Right?
You’re afraid even to admit to yourself that you’re afraid that’s not true. That fortune has favored you. That you had help. Even if you were once poor, you had lucky breaks. Because there are a lot of people that worked even harder than you and just plain died in the gutter.
You want to stay asleep with the blanket over your head in your ‘nice’ neighborhood—there’s no place like economically privileged home!—dreaming The American Dream. That you can be born with nothing and work your way up to the top and become president.
Really? All on your own?
No help at all?
Good luck with that.
Money doesn’t fall from the sky, and neither do opportunities. They come from government and private institutions and organizations, from legislation and from sheer lucky chance, but most of all they come from individuals, every day. Individuals like you.
Chances are you’ve helped a lot of people all around you every single day, and they were all like you—because you don’t shop or work or eat or live or play anywhere that we do. So all that helping just circulates around the same middle-class pool. You don’t even need a ‘Privileged Only’ sign on the gate, because it’s way off the bus route and we’re fucking too tired to swim anyway.
We value what we have inside us. It’s the one thing no one can take away or destroy. Poor people are strong, and creative, and intelligent. We see past appearances and think critically. We endure, adapt, and survive. We learn what you don’t have to. We didn’t set out to achieve these qualities through bettering ourselves or self-help books. We got this way by surviving.
You have no idea what we live with.
You have no idea what we have inside us.
You’ve been so generous sharing what you have inside you, perhaps you vocal few (but if you’re not speaking up in a conflict you’re on the side of the aggressor; bystanders don’t get innocence points and need to take responsibility for the consequences saying nothing). This narrative permeates our culture, and it makes me sick, and it makes us all look bad, and it tells us the story of who we are and how pathetic we are. Because we often don’t have a voice to tell you who we really are and what it’s really like. We don’t have the media, platforms, connections, credibility, respect, the time, the energy, and the nicey-nice words you wanna hear. And we don’t tell the story that fits with yours.
So the next time you wanna play Rescuer and expect me to shower you with golden gratitude—
The next time you privilegesplain something to me about my experience—or give me asinine advice without my consent (is it so hard to ask first?)—based on whatever fantasy reality you’re still living in that bears no resemblance to what I live with every day—
The next time you judge choices whose results you don’t have to live with, and assume that we had better ones—
The next time you overvalue what you’ve learned from books and institutions and studies made up almost exclusively of economically privileged people—because how many poor people have the resources of time and transportation and energy and access (or are even asked) to participate in studies in any fashion, and is that information ever noted in the documentation?—
The next time you undervalue or invalidate lived experience and emergent knowledge and understanding—
The next time you laugh at or repost a joke about some ‘loser’ living with their parents, or trailer trash, or white trash, or the people at Wal-Mart with pain in their eyes you never seem to see—
The next time you judge a poor person with an addiction, visible dirt, worn out clothes, missing teeth—
The next time you judge me as ‘not really poor’ because I don’t fit the picture in your head—that judges based on appearances and nitpicks every detail of how I look and live and makes assumptions—because I make an effort to pass as ‘not-poor’ for the same reason it’s good not to appear to be a wounded gazelle on the savannah; I get much more respect and consideration when I pass—
The next time you scrutinize and judge what I spend my money on—
The next time you pat yourself on the back for giving what’s easy to give, money you can afford by changing to a lower Netflix plan or volunteering for a couple of hours on a national holiday, and celebrate how Mother Theresa you all are with a round of Organic Artisan Local Fair Trade Free-Range Prosecco and verbal mutual masturbation—
The next time you take up my space in those rare times I summon the resources to be there and the courage to speak, talk over me, expect me to explain what you don’t understand or give you a cookie for heroically taking a few minutes to read this and dip a toe in where I have to live—
The next time you touch my body or my stuff in that too-familiar way like you do with your privileged friends—
The next time you yap condescendingly at me or some other poor person for being angry, not calm and perfectly polite and considerate of all your emotional needs (godsdamn it, we are tired—you get cranky when you’re tired too—we are tired all the time)—
The next time you look down on us—
The next time you feel sorry for us or pity us—
Just don’t go there.
If you give me the gift of one less arrogant, loudly ignorant privileged person—
one person with closed mouth really listening to what I have to say—
one person asking me to share my expertise in order to hear it rather than refute it—
—then I truly will be thankful.
And my expression of gratitude will be heartfelt.
“It breaks my heart to realize that the economic deprivation of my past and present does not simply limit me in terms of what I can buy and what resources I have access to. It also limits who I can love and who can love me. […] Being with anyone outside of my economic class requires a substantial and ongoing effort, and I cannot feel safe and comfortable with someone who is not willing or able to pick up their end of that effort. I cannot date or become close in any way to someone who casually makes classist jokes, who resists being called out for classist statements, who doesn’t believe that class is an important issue, who is insensitive or dismissive of money issues in my own life, or who becomes uncomfortable in discussions of my poverty or their privilege. […] I don’t think that people who don’t meet my standards are necessarily bad people, or that they are not worth being around. But for my sanity and security, for the sake of an emotionally heathy relationship, for the mere fact of wanting to be with someone who treats me as a human being with valid and real experiences, my close relationships have to be very carefully formed.” —‘Of love and money,’ classragespeaks.tumblr.com
Kinder, gentler articles on this subject (or companions):
- Nine things I wish economically privileged people in my life knew
- Nine ways to be a good friend in the face of economic differences
- This Is Why Poor People Can (And Should) Have Nice Things
- The Logic of Stupid Poor People
- 4 Ways We Ignore Poverty and Blame Poor People and What You Can Do to Help
- Being Poor
- ‘You should be grateful for what you’ve got’
- 5 Things Nobody Tells You About Being Poor (for contrast: this is even less kind and gentle than mine, to show you just how angry this rant COULD have been, yo)
It’s been two years since I applied for Social Security Disability Income (SSDI). I have so many feelings about it.
Invalidation is a huge trigger for me. (More about this in a later post) Having people not believe that I'm hurting has ended friendships, started fights, and left me wounded in ways I'm at a loss to heal. It's even worse when my life hangs in the balance and I'm up against a faceless bureaucracy.
I’ve heard a lot of stories about applying for disability. That it can take years. That it's this way to dissuade everyone who doesn't absolutely need it.
The process of getting a lawyer was humiliating and triggering. Many wouldn’t take my case because they didn’t think they could win it. (Very invalidating.) One problem was my unsuccessful work attempts -- they're actually accounted for in the process, though, and are known as UWAs. To me they were painful, traumatizing, physically and psychologically damaging experiences that proved to me that while I can sometimes get a job, it starts destroying me once I have it.
“There was only one catch and that was Catch-22, which specified that a concern for one's safety in the face of dangers that were real and immediate was the process of a rational mind. Orr was crazy and could be grounded. All he had to do was ask; and as soon as he did, he would no longer be crazy and would have to fly more missions. Orr would be crazy to fly more missions and sane if he didn't, but if he were sane he had to fly them. If he flew them he was crazy and didn't have to; but if he didn't want to he was sane and had to. Yossarian was moved very deeply by the absolute simplicity of this clause of Catch-22 and let out a respectful whistle.” —Joseph Heller, ‘Catch-22’
No matter what work I’ve done, even attempting self-employment, it has been so painful and difficult that it has damaged me and destroyed me to do it, put my life on the line, thrown me into so much stress I was out of my mind on trauma and flashbacks and totaled two cars, as well as coping with the increasing pain and stress through cocaine, cutting, and self-flagellation in morning showers, bathroom and lunch breaks, and alcohol after hours. Yup. Really. Eventually I was nearly insensate and mute. And eventually, here, I will write further on how with addiction as well as suicide we’re asking the wrong question—we ask why the behavior, when we should be asking ‘why the pain?’
“In the book, Catch-22 is a military rule typifying bureaucratic operation and reasoning. The rule is not stated in a general form, but the principal example in the book fits the definition above: If one is crazy, one does not have to fly missions; and one must be crazy to fly. But one has to apply to be excused, and applying demonstrates that one is not crazy. As a result, one must continue flying, either not applying to be excused, or applying and being refused.” —Wikipedia article on Joseph Heller’s ‘Catch-22’
It seems a classic Catch-22 that I have to have the skills and competence advocate for myself and put in a lot of (triggering) work just to apply for disability, fill out paperwork, get medical records, fill out more paperwork, find an advocate or lawyer, stay sane and articulate through this. To produce history when there is none, erased by lack of medical records from when I was in the clutches of the cult and the sale of the clinic and destruction of records, my own faulty memory, and no trustworthy witnesses or sources of information from my early life. On ‘Quantum Leap’ they refer to Sam Beckett’s memory as ‘swiss-cheesed’ through the process of Quantum Leaping, with huge inexplicable gaps. Having been brainwashed and mind-controlled for most of my life my memories are sometimes jumbled with things that never happened but were told to me, over and over.
Fortunately lawyers and advocates work for a percentage of back benefits if the case is won; otherwise most applicants would ever be able to afford a lawyer. And even more fortunately, when turning to the neo-oracle that is Google search with desperate questions about how to deal with the prolific psychological exacerbations of applying for disability while experiencing psychological disability extreme enough to warrant that application, I found an article written by a local disability advocate that spoke to my heart. And she agreed to take my case. She’s worked with many clients with psychological disabilities and can understand my plight.
This was, unfortunately, after an experience with a lawyer who agreed to take my case and then flaked out when his wife got cancer. I feel for him, truly I do; my husband died of cancer. But I knew I was useless to help anyone during the year he fought for his life, and I knew from experiences with this lawyer he could not help me win my case under the circumstances. Putting myself through the process of searching for another lawyer was fraught with its own triggers and crises, and I was on my own to deal with the fallout.
Another problem with my case is that I’ve never been hospitalized. And the reason for that is that when I’m in crisis the last thing I want is people around me, or feeling trapped, or having freedom taken away. I get paranoid, with good reason. The worst nightmares of my life have come when I was trapped in the house of a man with a medical degree and a woman with a degree in clinical psychology, or otherwise trapped with people who had power over what happened to my body and stood in judgment over my pain and what was best for me. I’m not exaggerating when I say I would rather die than go in a hospital for mental health reasons. It’s one of my worst nightmares. Particularly after hearing horror stories of the local mental hospital.
But the hearing date for my case is still beyond my control. The sword of Damocles is hanging over my head and there is nothing more I can do than what I have done, go to my doctors, get statements, get releases for records, entreat social workers and therapists and doctors who work with me to testify on my behalf, try with limited funds and resources to get additional appointments with specialists (don’t get me started—I’m still waiting on that…).
I’m waiting and waiting. I search online for guidance. I wondered if it was possible for me to write in statements about the weak areas in my case, explaining what it’s like for me when I work, about the thirty-plus flashbacks I have a day, difficulty focusing, memory problems, hypervigilance leading to paranoia and loss of sleep and basic self-care, and why I won’t go in the hospital and staunchly resisted attempts to send me there during crises. I found discussions of people who, disgruntled at the unreasonable situation of waiting two years to get disability during which they couldn’t work and had no income, wrote to political representatives and that in some cases it accelerated their cases.
It’s triggering to tell my story, and to think of telling my story to strangers who have no reason to care. The chance of invalidation is great. As is the powerlessness that comes from pleading for help for my life and hearing ‘I’m sorry, but no, there’s nothing we can do’ — or worse, ‘we believe that you can do some sort of work.’ I thought bit by bit I would break it down into steps, find sample letters, figure out how to use my strength — my words ± to reach out. I hate having to reveal this most wounded and vulnerable part of me to uncaring strangers just to try to survive. It feels like having to take my clothes off and let people touch me all over, with disdain or blankness in their eyes.
I feel something similar having to over and over again fill out paperwork and submit my personal financial records to renew eligibility for a low-cost clinic and food stamps. It’s so triggering to know that my basic needs could be denied for some reason out of my control, to face these people with so much power over me and no reason to care, under pressure themselves, and know that changes in state funding and policies I have no say in could yank these basic needs from me at any time. It disenfranchises me as a voter, not to mention the fact that this and my disability take up so much of my caring bandwidth I have very little to spare beyond my own struggles.
“Other forms of Catch-22 are invoked throughout the novel to justify various bureaucratic actions. At one point, victims of harassment by military police quote the MPs’ explanation of one of Catch-22's provisions: ‘Catch-22 states that agents enforcing Catch-22 need not prove that Catch-22 actually contains whatever provision the accused violator is accused of violating.’ Another character explains: ‘Catch-22 says they have a right to do anything we can’t stop them from doing.’
Yossarian comes to realize that Catch-22 does not actually exist, but because the powers that be claim it does, and the world believes it does, it nevertheless has potent effects. Indeed, because it does not exist, there is no way it can be repealed, undone, overthrown, or denounced.” —Wikipedia article on Joseph Heller’s ‘Catch-22’
Disability and Self-Worth
“What does ‘worth’ mean, Mister Nutt?”
“It means you leave the world better than you found it,” said Nutt.
“Good point,” said the lady with the macaroons. “There’s far too many people around the place who wouldn’t dream of doing a hand’s turn.”
“All right, but what about people who’re blind, for example?”[…]
“I don’t think there are absolutes,” said Nutt. “I think what Ladyship meant was that you have to do the best you can with what you have.” —Terry Pratchett, ‘Unseen Academicals’
What is worth?
Is it intrinsic? Gold has a lot of monetary value, but as a metal for making things out of, it’s pretty soft and useless unless used as an ally or plating, or in repairing beautiful wabi-sabi broken Japanese vases through Kintsugi. Which makes an amazing metaphor, but I digress.
What about smartphones? Many of us have come to depend on them, but a smartphone without connectivity or power, or in the hands of a third-world individual whose pressing needs run to clean water and food, what worth does it have?
We all have value judgments. Some inherited. Some unquestioned. Many subjective. As someone who’s written my whole life, not to mention my experiences in a cult, I have run up against the persistent idea that worth and value are determined by external forces based on sometimes arbitrary and externally enforced qualities and characteristics.
Our consumerist culture, our mass media, our advertising panders to those who have money. People without jobs are pitied, reviled, harassed. Their joblessness is often seen as a direct measure of their worth, and gaps in employment make it harder to get jobs. Just as someone without friends or romantic attachments is assumed to have something intrinsically wrong with them. People who live in their parents’ basements are the fish in a barrel it’s easy to shoot with jokes, mockery, to lump into one lip-curl sneer dismissal of an entire segment of people. Although I’m hearing many millennials are graduating college and moving back in with no job prospects available.
“He’s always making things. It’s as if… worth is something that drains away all the time so you have to keep topping it up.”
“Possibly, now you put it that way, she has been a little too brisk with him.” —Terry Pratchett, ‘Unseen Academicals’
What is worth? If a person writes a novel, and no one likes it but the author, does it have worth? If a person has no friends, no family, no job, does she have worth?
There’s a stigma around disability. A lot of everyday ableism. People think disability = wheelchair. It’s the universal symbol for disability, though there are efforts to change this. I’m glad there are places like the Invisible Disabilities Association and Invisible Illness Awareness Week as well as articles on NPR and Everyday Feminism raising awareness since most (estimates show either 73% or 74%) disabilities do not require assistive external equipment like wheelchairs, walkers, or canes.
So many stories and TED Talks on disability we see are ‘inspiration porn,’ people with visible disabilities who worked so hard to overcome them and be as productive as normal people, and insist that we can overcome everything. I’ve always felt that was unfair to those of us who can’t. (Please read this short excellent post from Real Social Skills about the importance of the phrase ‘I can’t.’) I already feel enough of a failure by my society’s consumerist values I’m hit in the face with every day, and the lack of options and the humiliations I face as someone poor and disabled, without being held up to an unreasonable standard by people who have no idea how hard it is for me.
Having to declare over and over again how disabled I am puts so much of my focus on what I can’t do. That’s depressing and demoralizing in itself. I want to take pride in myself as a disabled person — not in my disability, because I wish I wasn’t disabled, but in my whole self including my disability, which is just one part of me. Yet often when I speak about my disabilities and happen to offer specifics about what they are, I encounter people who expect me to be working 24/7 to ‘cure’ myself, and tell me all these things I should do to ‘fix’ me when I didn’t ask and are not my doctor and haven’t had my experiences and have known about my case for all of maybe thirty seconds (note: unsolicited advice is criticism, and a habit that can be detrimental to all your relationships). That doesn’t convey to me that they’re willing to accept me as I am. I know they mean well, they’re only trying to help, and they’re products of an ignorant pill-popping society where the disabled people who get the most airtime are those who overcame, the uplifting story at the end of the nightly news to encourage abled people. Intention is not the issue. The issue is I want to be heard and accepted as I am.
I resent being someone’s ‘fixer-upper’ friend. I also don’t like being someone’s ‘inspiration’ when it reduces me to a thing for their benefit, or when they tell me how strong I am but don’t have the strength and humility to just listen to the uncomfortable tales of how humiliating and hard it is for me right now, that there’s nothing I can do, no pill, no quick fix, no job I can do, nothing. I know it’s scary to hear that someone as ‘strong’ and ‘articulate’ and ‘smart’ as me can still be in such dire straits. If it could happen to me, maybe it could happen to the listener too, and that’s a terrifying prospect. I get it. But honestly I need a place to talk about how hard this is. Because silence induces shame, and the fear responses of other people induce shame and isolation. It puts all the focus on the disability until I feel I’m nothing but a huge pile of ‘can’t.’
What I want, what I really want from people I interact with, is for my boundaries and my disability to be accepted without a big deal, like my eye color. I want to be able to say ‘no,’ or ‘I can’t,’ and have people not take it as a personal insult, or fall apart crying, or panic, or express how bad they feel, or make it about their feelings and needs, or want to know why, but just be like, “Okay, sure. We’ll talk about/do something else.” I don't want to argue or fight when I say ‘no.’ I don’t want to negotiate. And I don’t want to have to say ‘no’ more than once, that raises my Defcon level and I feel a need to retreat into my armored mountain and cut off from everyone.
When people learn I’m disabled, I don’t want to have to prove it, or share my symptoms or my history. I don’t want to hear about these bullshit ‘miracle cures.’ I don’t want to hear about their stories or their friends with disabilities. I don’t want to hear that other people have it worse, or how I should feel or think about my disabilities. I don’t want pity, I don’t want to be looked down on, and I don’t want people to do anything to ‘help’ without checking with me first. I don’t want people to say things to try to comfort me that might be invalidating, like ‘everything happens for a reason’ or ‘at least you LOOK good’ or ‘you’re still young, maybe you’ll get better.’ All I want is validation, and I want to know it’s safe to talk about how this part of me makes it hard to exist in this society and this world, and validation for that.
I want to be heard. I want to be valued as I am right now. Not for what other people want from me, not for what I can struggle to do on my best days, but for what I can do and be even on my worst days, which these days are so numerous.
…Doesn’t everyone want that?
“Do I have worth?” asked Nutt.
“Yes, Nutt, you do.”
“Thank you,” said Nutt, “but I am learning that worth is something that must me continuously accumulated. You asked me to be becoming. Have I become?”
“Yes, Nutt, you have become.” —Terry Pratchett, ‘Unseen Academicals’
He didn’t mind how he looked to other people, because the nursery magic had made him Real, and when you are Real shabbiness doesn’t matter. ― Margery Williams, ‘
I’m staring at a mailing I got recently from the Social Security Administration Office of Disability Adjudication and Review. The case manager working at my advocate’s office tells me this is a sign they may be about to set a hearing date.
I had just been nerving myself up to do the work to find out who the hell my representatives are and what to write them. I had been waiting to see a rheumatologist for eight months to get a corroborating statement on my physical disability. I had been wondering if I could write statements to address the weak spots of my case, or clarify how difficult it is for me to function, and how intolerable it is for me to be physically around other people or have them have financial power or control over me in general. Now I’m staring at all this.
I’m all I’ve got. I have to take care of myself and get myself to appointments and fill out forms and write letters myself. And I would dearly love to just mail off all my journals over the last five years, full of pain and confusion and paranoia, to the Office of Disability Adjudication and Review and say, “HERE! You demanded I strip down and show you where it hurts and why I can’t work, so why not look at how it feels to be inside my head? This is what you deny. This is the madness that plagues me. It doesn’t fit in your little boxes on your little forms, and neither do I. This is why I’m unfit for duty in the workforce of society. I can barely keep up with what’s here and now in this moment or remember or know what is real.” Part of me would love to just show them one of my emotional meltdowns.
But much greater than that is the fear of consequences. That my liberties will be taken away, that I’ll be involuntarily committed and lose my mind entirely, thrashing madly like a wild animal thrown in a cage, ensuring in my panic and terror that I will never leave, that I’ll be drugged and shocked into insensibility until I’m a drooling zombie. And I’ve known people who have had this happen to them. Yippee. It’s not like my fears are unfounded or cognitive distortions. I’ve had enough nightmare experiences to know there is real danger attendant on my choices.
I’m supposed to be together enough to do this, this triggering labor, these conversations and evidence-presenting that take my breath and words away. So many times when I have told these things, I have been invalidated, insulted, denied my basic needs, denied my very reality, been told my pain isn’t real, doesn’t matter. It was my parents’ and the other cult members’ favorite refrain. That if I can’t work it’s my own fault. That I’m lying. That I haven’t really tried hard enough or long enough or enough enough. That there’s something I haven’t done. That I could overcome, that I really can work.
And I can't. I know what that makes me in the values system of this society and culture. If I can’t work enough to meet my needs for survival, then I don’t deserve to survive anyway, yes? Why should people’s taxes and government support parasites like me? What worth has my life if I’m not contributing anything, no labor, no support, nothing of worth or value to other people with most of my waking breaths? I spent most of my life trying to please others and with the notable exception of my husband and dog, both now dead, nothing I did was ever enough.
It’s demoralizing. And the fact that I keep trying to make in-person friends and getting used and hurt and not being able to make it work tends to reinforce my sense of hopelessness, helplessness, worthlessness.
I know by now that there are people who don’t want to hear and don’t want to believe, and I have wasted too much of my life and voice on trying to convince and speak to them, because there is nothing, nothing at all that will ever convince them. I have lost all confidence in my voice and my words because they were never enough for these people.
I’ll be honest. I’m filled with panic. I’ve spent most of the day bounced around through flashbacks of all that’s come before and worst-case scenarios. Since I’ve seen the worst of humanity rationalized as ‘for my own good’ I can tell you that things you wouldn’t even think possible are. I’ve paced, I’ve dissociated, I’ve had enormous physical and psychological pain that had me thrashing and sobbing, unable to really define where one ended and the other began. I’ve been triggered out of my mind. My memories of today are in jagged shards and missing gaps, as happens on my most stressful days. This isn’t a panic attack that’s gone in a few minutes. This is a crisis that will drag me down with its undertow throughout whatever comes next.
And thanks to North Carolina’s mental health funding, the Community Support Team I had to help me deal with practical real-life support like this was only available for six months. And then six months later I got it again, and then it ran out at the beginning of February and I won’t be eligible again until August.
I am terrified that when it comes time for the hearing to decide my fate, all I will face is a room full of people just like those who would never believe the pain they could not see, weren’t enduring and living with. Dead fish eyes, cold contemptuous flatline mouths, bad-cop rapid-fire questions, sending me right back into childhood nightmares that played out just like this.
I’m afraid of trying so hard to hold it together that they believe that this is a sign I could work. I’m afraid of genuinely melting down and having them decide it’s an elaborate act, or believing it and calling an ambulance and involuntarily committing me to my worst nightmare.
I am terrified that I will leave that room either in a straightjacket or in the silent resignation of the condemned.
“Someone might offer you pity and sympathy for your disability. Make them state the disability. Make them say what they mean. Make them support it with evidence. If they say that you’re delusional or mentally deficient or too grief stricken to know what you’re saying—which, I believe, you definitely would be if your memory were intact—make them explain how they’ve come to that conclusion. Then, by your questions and your behavior, prove them wrong. If, on the other hand, they can’t say what it is they’re pitying you for, they must be the ones who are confused. You see?” —Octavia Butler, ‘Fledgling’
It used to be that sometimes, I was afraid if I started crying, I would never stop. I’ve learned through experience that eventually it stops, and I always feel at least a little relief from tension and anxiety when I do let myself cry, in a safe, secure place with no one around.
I’ve spent so much of my life in silence, because of the consequences when I did speak up. Interruptions, invalidations, betrayals of trust, retaliation, violating of boundaries ‘for my own good.’ Condescension, especially. Because of others’ fear and discomfort with the things I most needed to talk about.
I feel all backed up inside with all the things unsaid, and worse, the things I did say that were hurting that got salty lemonade poured on them, escalating minor annoyances to traumatic isolation.
I write hundreds of pages a month. I write like I need it to survive. I write my own deliverance. But somehow, it’s not enough. And I am afraid if I start to blog, here, all the things where I feel I really need to be heard, I’ll never, ever stop. And I’ll wind up like Virginia Ridley. I’m already a hypergraphic shut-in.
I stopped sharing when people weren’t listening. There are such awful ways people have of appearing to listen, but really only using what I say to their advantage. I’ve been through so much, and I’m so tired of myself and my body and my words getting used as a prop for other people’s needs.
I have so much to say. So, so much. I have a brand-new blog here, but I don’t even know where to begin. My heart is hurting deeply. Other than with my dead husband I’ve never had an in-person relationship where I was totally myself, that felt equal, respectful, trusting, joy-inspiring. I enjoy books and dogs and my imagination. They’re safer and they don’t care about the things other people judge me for.
When it comes to figuring out how I feel and what I need, I was pretty well abused out of the honest ways of a child. Even my own self-awareness is blocked because the fear and shame of my feelings and needs is so deeply ingrained. No matter how much work I’ve done deprogramming myself, it’s hard to create and hold on to acceptance of myself when I'm still surrounded by people who find what I have to say uncomfortable to listen to. And I can tell. I can really tell.
Sometimes the thing that’s scariest about the possibility of being aware of my feelings and needs is that it may come along with a sense of intolerable and triggering powerlessness to do anything about those things. I think that may be the strongest deterrent that keeps me from that knowing. Just like kids who are abused tend to feel it’s our fault, because it gives us a sense of agency — if we could just figure out what we’re doing wrong and what’s wrong with us and fix it, the abuse would stop, right? Because when kids figure out that nothing they do matters, and the abuse will go on regardless — which is true — they give up, fail to thrive, and die.
I haven’t given up. But for the moment I’ve given up on face-to-face with anyone other than my therapist and the intern I see when I can’t get funding for seeing my therapist (ugh, don't get me started). It’s too much effort for me to explain and see things from their point of view, and too little effort from others to reciprocate or even recognize that there are a lot of basic assumptions that aren’t applicable with me. That such unconscious assumptions even exist. Spend too much time around people just like you and you forget how to relate to people who are different. But I’ve never been around anyone even remotely like me, except in online support forums. We don’t get out much, for reasons like these. Can you blame us?
Maybe I was just fooling myself into thinking I could handle the face-to-face world. And I paid a heavy price for going out there. I don't know if I can even see the extent of the damage. I feel it, though, feel it in every aching fiber. I will build myself a fort of books and tie a line to things that feed my soul and take walks alone and write and strive for the best I can make out of this so-called life.
Your Dolphin Moment
(It’s easier to think about dolphins than to NOT think about rhinoceroses.)
I intended to end this post on a high note. But it took hours more than it should have to give you what I will, yes, eventually give you, and it will be worth the wait.
Things stop working.
And when you’re on your own, and have no money and limited energy and resources of all kinds, it’s you who has to deal with it. I made and maintain this website myself. I’ve had no special training and no desire to spend time and money and energy I don’t have becoming a WordPress expert. What I wanted was my own domain name, and a simple beautiful place where I could easily share my words, my hooping videos, my photography, and photos of my sculptures.
I was fortunate to find and work with a WordPress YouTube tutorial by Tyler Moore whose finished website looked appealing to me. It was easy enough to deal with the ‘What You See Is What You Get’ website editor, with just a few technical difficulties it was easy to use Google searches to remedy. I lovingly crafted logos and graphics and made everything just right. It was a place for me to share all the art I hoped to make.
But when you’re poor, disabled, struggling, and on your own… things take their toll. Medications and coping skills stop working. Things that you enjoyed lose their charm, and a little more color seeps out of the world. Every morning I wake up knowing there’s a possibility that everything that enabled me to get through last month, last week, yesterday, might not work anymore. I can’t rely on anyone or anything. Talk about no comfort zone. All my creativity and time gets poured into finding new solutions when the old one stops working, learning how to do for myself or how to do without.
Hoopwalking provides low-impact exercise and warms up fibromyalgia-stiffened muscles, as well as soothing me and encouraging me to hydrate more. And lately there have been irises in bloom out where I hoopwalk, inspiring me to take pictures, as I love to do. I wanted to share the beauty of these irises that struck me in this tough time.
Because of changes Google is making with Picasa, not only could I not make a perfect new little iris gallery like the others, in trying to copy the widget from the hibiscus gallery I lost that one too and couldn’t restore it. Hours of attempting to fix the gallery, the widget, start a Flickr account and use that, finally resulted in a not particularly user-friendly or pretty gallery of the admittedly beautiful iris pictures, and a similar one to restore my beloved hibiscuses.
Maybe there’s a better fix, but I’m expending psychological bandwidth I can’t spare just to try to share this and end on a high note. (Not doing so well on point B, I realize.) I’m not getting paid. This isn’t what I want to do with my time. I like having control over something—anything—because powerlessness is so prevalent and triggering in my life. But sometimes it takes so much out of me that doesn’t get put back.
Most of today was taken up with this website redesign. Which isn’t perfect, but it just has to be done. (There’s two more things I want to do and I’m in terror of what toll that’s going to take.) I’m the queen of starting over. I try things, they don’t work, I try new things. It’s how I’ve survived this long and continue to survive.
When I started this website I ambitiously wanted to be an multi-discipline artist living spherically in many directions, retaining my childish enthusiasm. But I was still in denial about how disabled I truly am, because it’s heartbreaking to me. Partly because of the socialized systemic attitudes about disabled folks, and typical attitudes of pity. (Note: pity is not respect in any way, shape, or form.) Not being able to do things that others can do makes me feel lesser. Not being able to have my needs met, or to depend on things, scares and angers me, disempowers me. I’m resigned to using this blog to share my struggles in the absence of any social, familial, or community support. (Massive failures on all those counts.)
Loneliness isn’t the absence of people, it’s the absence of understanding. Every person wants love, attention, and respect. I have met so many people, tried so hard to explain myself, to gain understanding and connection, had my heart shattered and those shards ground into glass dust. Fired and made whole again and shattered again. In silence I have written a million words, and still I wonder if anyone will ever really hear me, really get it. Intellectual understanding blocks empathy, and unfortunately is the first thing people try in order to hear where I’m coming from. I want art to express how I feel, but sometimes I’m completely at a loss as to how to do that either.
What these pictures say is: please, let there be just this one moment of beauty.
Tomorrow, who knows what may be lost? Will I be able to get out of bed, or will pain nail me there? Will I be able to feed myself? Will something stop working that I can’t afford to replace? Will another coping mechanism cough its last, and the dark tide of my past flow in to consume me? Will the crazy man in the neighborhood find out where I live?
Please, let me find the fleeting moments that will be gone tomorrow, the few things left that are free, that I can reach, that I can touch. Let me have this light and color while I can.
I’m starting over.
The more I’ve struggled with disability and poverty, the more I’ve realizing my limitations—and my need to speak out about my experiences.
Inspired by disabled bloggers like Lee Davis at ‘We Can Still Blog!’, I have remade this website to be a place for me to talk about what it’s like for me, challenges and triumphs as I persevere.
Sexual Assault Awareness Month & Child Abuse Prevention Month
April is both these things, and is usually my biggest month for doing activism work. The Orange County Rape Crisis Center partners with many other area organizations in a variety of different activities.
This year I’ll be performing a piece I wrote especially for this year’s annual Shout Out! Against Sexual Violence. I did it last year and it was a powerful and wonderful experience for me to be there and participate.
National Poetry Month & Songwriting
April is also National Poetry Month. Last year along with many other poets I participated by writing 30 poems in 30 days. I could write a whole article just on how month-long writing challenges are fantastic for me. The best thing was that it got me to write a whole lot, and to experiment with different forms, and be more daring. It wasn’t about making every poem perfect, just getting it done.
Since then I have taken up and learned to play the ukulele. I decided this year to kick up a notch my participation in National Poetry Month and write 30 songs in 30 days, to get me over the daunting idea that Art Is Hard and just do it. So far I’m a little behind, only two songs currently done. I’ve become more aware of different aspects of music, and learned more about my instrument than I ever have in a very short time. I learn so much better, and more, from doing, so even if all the songs turn out disasters, I’ll have fun.
One thing I found and read in my research about songwriting was this excellent, entertaining, informative book by Mark Forsyth called ‘The Elements of Eloquence’ that examines the musicality of rhythms of expression and language, the particular aspects of rhetoric that we no longer learn in school but used to be part of a classical education. The secrets of Shakespeare and Blake and more! It gave me a lot to think about and answered a lot of questions I had about what makes certain songs and phrases catchy. Human beings are very responsive to music and rhythm, and I’m fascinated with the ways we can be moved by certain kinds of art and certain specific techniques of expression that can be quantified and learned.
Challenging My Racial Biases
My activism centers around oppression. How people mistreat each other, and how we can respond and change constructively. I found that it’s almost not a choice for me. I’m female, invisibly disabled, and poor. In order for me to survive I have to advocate for myself, and become aware of biases, systemic issues, and discriminations that for many more privileged people are invisible.
Learning how to name and talk about what’s happened to me throughout my life also makes me become aware of my own lack of awareness, cultural competence, and sensitivity in places where I am privileged. It’s important to me to remedy this in any way I can find.
Reading is my first stop. I read a lot of articles. My first instinct when I come across a challenge is to learn more about it by plugging search terms into Google, and to write about it as well. I found the article ‘Help, I’m a Racist and I Don’t Want to Be’ which offered a great deal of helpful advice.
I’m reading books written by writers who have chosen to share about their culture and their experiences. I’m seeking out voices that have already spoken. I have a lot of time to make up for, all the time I’ve been surrounded by and consuming white culture, cisgendered culture, cissexual culture, kyriachical culture.
I know from my own experience I hate being expected to educate others. I hate being scrutinized and fetishized and interrogated. I hate having to, in addition to navigating a world that is systemically a deck stacked against me, explain very personal things about myself for which I have been shamed and hurt often. I also know that allyship is a tricky thing to do well. (See this excellent article for starters: ‘10 Things All Allies Need to Know.’)
I’m very aware as I’m writing this that I don’t want to ‘perform’ my own awareness-raising, but I do want to share the resources I’m finding with others. As someone with various kinds of privilege I want to use that to challenge others with my privilege in ways of thinking and speaking and acting that they may never have questioned before. And I’d rather risk getting it wrong, screwing up and practicing my apologizing and restitution skills, and accepting responsibility, then never doing anything at all.
It’s not enough for me to think of people who are different to me as equally deserving of the same rights and privileges I have. To truly be in service of change and of equity and inclusiveness I need to always be challenging and learning myself and questioning my environment and thoughts.
On Blogs and Living with Disability
In the past I’ve started blogs and watched them die after a few posts. There are a lot of reasons why. One is that I get so self-conscious when I know I’m writing something other people will hear and can often lead to me losing self-confidence and speaking in a false voice, coming from unconscious fears and traumatic prior experiences with sharing my words with others—written or otherwise. Another is that I write a lot, and often not in a linear style, following lots of rabbit trails, and editing robs me of time I often want to spend doing something else, for writing that it might be no one ever reads.
But one of the most daunting challenges is my disabilities. These disrupt my capacity to maintain any long-term anything. Projects. Jobs. Even friendships and relationships. I never know, day to day, how bad my symptoms will be. I never know if I’m going to have a spate of days so bad that I can barely take care of myself.
One of the first things to get shut down in my tough times is all my communication with other people, out of self-preservation. I’ve learned the hard way that talking to people when I’m hurting badly is so triggering and dangerous for me. It can often make things much worse, like showing people my wounds and having them dump a gallon of salty lemonade on them. Most people’s responses to my pain are so far the opposite of helping that they can be traumatic in themselves.
Those are the times are when friendships end, when in the past I had unsuccessful work experiences and jobs got . Those have been my most self-destructive times, when I’ve been in so much pain that I was reduced to sheer animal instincts of wanting it to stop, just stop. Those are the times when I’ve had to start all over again, pick up the pieces, and often make serious changes to my life and my routines and approaches to problem-solving. Medications and tools and coping skills stop working, or aren’t enough to pull me out of it. Sometimes it feels like starting over from the beginning of the entire game every time I lose a life, and my little player character being so vulnerable in spite of all the strength I’ve built that the least little hit kills me.
There are a lot of blogs out there by people living with disability, whole networks of them. My favorite so far is ‘We Can Still Blog.’ Even just sharing one’s own personal story can hearten others who are struggling, as I know firsthand. So sometimes I think about writing and sharing my daily challenges.
What holds me back is all those traumatic past experiences sharing my words and getting hurt. I know that what moves people to comment is more often anger and offense than anything else, so that even if people are reading along and enjoying, the ones I’d be likely to hear from would be the vocal angry few. I know what that does to my psychological health, my well-being, and my capacity to write.
I know, too, that in writing as well as speech it can undermine my ability to work and to share if I feel I’m not being heard, or if I feel like I’m only being argued with. For most of my life I’ve been a very quiet person for just that reason, and it’s made it that much easier for people to get away with unfair treatment of me. It’s difficult to learn at this age to complain effectively, and to speak out in spite of the potential negative consequences, to live my values and to take care of myself at the same time.
So that’s all for now. Maybe someday in the future I’ll come back to this idea of keeping a blog, of sharing my voice. At present it’s so damn hard to even get my basic needs met, and that’s living with active, continual, disempowering trauma. From what I’ve learned, trauma, and post-traumatic stress, occur when someone has been overwhelmed with pain or fear or both and had their agency and ability to protect themselves stripped away. That is what my life is every day. I can’t even count on what I’ll be able to handle or do, or on anyone who might be helping me right now. Sometimes I can’t even count on my words. And that silence can be terrible.