I’ve been working for some time on some videos for my ‘Reality Check’ series to show what life is like for me with disability and poverty. I realized that there was a much greater narrative that needed to be told encompassing more of the whole deal for me, because all the difficulties are interconnected.
I planned to write and record a voice-over for the footage I’d been shooting. It wound up so long I realized it was a blog post. I may eventually still make this a video. For now this is the best I can do.
“Where Do You Live?”
There are a lot of ‘getting to know you’ questions that are problematic for me. “What do you do for a living?” “Where did you go to school?” “Do you have family around here?” “Where do you live?”
I do want to talk about these things, but not with someone I just met. Someone I just met is not prepared to deal with the truthful answers in a respectful way. They’re asking questions they’ve asked hundreds if not thousands of times before. They’re not ready to go off-script. They can’t handle the truth.
Do you really wanna know where I live, why I hate it, and why it’s still the best of bad choices for me?
Then get comfortable, and read on.
The Scary House in the Woods
For most of my life I have lived isolated out in the country. Isolation is a favorite tactic of abusers. When someone isolates a target then there are fewer people who can see and ask questions, fewer people the target can talk to, fewer escape routes, less support, fewer reality checks. When one is isolated by someone they have control over more aspects of the reality one is exposed to. Cults love doing this too. I was raised in the woods, in a cult.
As a kid, even without being fully conscious of what I was missing, I was robbed of libraries, peers, potential exposure to and socialization with more well-adjusted people my own age and healthier concepts of reality. I didn’t have opportunities for programs that would have nurtured me as an individual and my passions and talents. Sometimes I still feel a lot of resentment when I hear about these programs for children only, rage that powers beyond my control took even exposure to the possibility of those things away from me.
For most of my childhood there was no internet. I also had no cable TV, and often very poor reception of the few broadcast channels. Even when we did finally get internet it was dial-up, and not nearly the resource for education and connection that it is today.
My intelligence I credit to an elementary school grounding in Montessori principles of self-education, and then my own curiosity and self-directed stubborn determination. Homeschooling abuse is something that few people know about, but there are organizations out there working to raise awareness, advocate legally for those still being harmed by it, and change laws to end it. Taking kids out of school makes it easier isolate them, indoctrinate and abuse them without getting caught. Some kids die this way. Many more suffer in silence and isolation.
City vs. Country
The first time I went to New York City was a revelation for me. I loved it there. I know places like NYC and London and Paris are problematic, expensive, and there’s always the risk of the bystander effect and domino-escalating violence, not to mention how bad section eight housing for someone poor and disabled would be. I don’t imagine I could live there. But what I loved about visiting was that no one hassled me.
Everyone had good boundaries. I think they have to, so it doesn’t turn into a bloodbath. No one was all up in my business. Beautifully and wonderfully, no one cared about my differences. I felt safer in Hell’s Kitchen alone at 2am on a Saturday night-slash-Sunday morning than I ever have in the woods.
I’ve seen people who live rurally displaying much higher rates of antisocial traits, including paranoia, bullying, abuse, and violence. I’ve been monitored out here, even down to my trash and my mail. People out here are more likely to draw a lot of attention to my differences, and have even harassed and threatened me on that pretext. That’s another story I’ll tell at another time.
The paranoia I’ve experienced around here, particularly in my own family, led to increasing controlling behavior, and things done in secret that impacted my life and the lives of others without knowledge or consent. This inspired paranoia and lack of trust in me too. I had to resort to covert tactics to protect myself, leading to a kind of Mexican standoff. I’ve also seen this controlling, secretive, manipulative behavior in other isolated, paranoid people in suburban situations as well. I seem to make a good target for them. That’s another blog for another time.
My social skills are pretty shitty. I don’t trust. I learned socialization from passive-aggressive paranoiacs. I prefer books and dogs to people. It’s ironic that I love big cities for the anonymity they offer. It’s so much easier for me to be left alone in that big a crowd. I’m less of a target in a bigger herd.
People out here love to fire off guns and go hunting, especially on holidays. This is nowhere near in the same category as living in a ghetto where those guns are actively aiming for people. But with my Complex PTSD, hearing those rounds fired out over and over even with my headphones blasting music—or when I’m out for a walk—makes me physically wince and puts me even more on edge than usual.
I know from experience it takes 30 minutes after a 911 call for a cop car to get out here. I’m fortunate in that there’s a volunteer fire department three minutes from here, but the nearest hospital is at least 30 minutes by ambulance.
Besides these safety concerns I’m so damn done with the drive to and from this place after so many years. It’s half an hour by car to the nearest gas station or grocery store. Longer to pharmacies. And because I’m poor, my options for healthcare are slim to none and mean an hour’s drive to get services.
Over my lifetime I’ve spent too many hours in a car just to get my basic needs met. With chronic invisible illness and disability sometimes it’s so draining and taxing it’s not even worth the cost to me physically, as well as the gas and mileage and time. Especially since I can’t really afford to go anywhere for leisure and respite from this place.
In more economically privileged times of my life, I’ve been on a lot of road trips, and even enjoyed them. Resentful miles are so much more painful and stressful to me than miles spent driving because I choose.
It gets old. It gets so old. So many years. So much unexpressed grief and anger.
A Very Brief Fairy Tale, Complete with Grim Ending
I met a man named Derek just before I turned 20. He was a miracle. We fell in love. We were so much in sync. For the first time I felt really safe with another person, and I could be myself, and he loved me just as I was. The feeling was mutual.
He rescued me from out of this nightmare. We got engaged, I moved in with him, we married. We got a dog and a house and we built a life together. Which was shattered when he contracted cancer from a medication he was using and died in a quick but painfully slow year.
It was my personal apocalypse. I couldn’t support myself. With his life insurance I hung onto the house as long as I could. I had nowhere to go. I tried so hard to find a way to build a life for myself out of that devastation. In the end the house went, along with most of my personal possessions. I found myself back out in the woods, squatting in a broken-down RV that had been neglected for five years.
Reclaiming this RV from mold, mildew, rats, bugs, and brokenness has been only partially successful. It probably will never move again. The cost is prohibitive and even if this thing belonged to me it’s not what I would want to drive around for a home and vehicle in one. The upkeep of a fully-functional RV of this type is ridiculously expensive and intensive. It’s 36' long, not a fun drive, and a gas guzzler.
It has no insulation. In the winter space heaters and electric blankets don’t really make it warm enough to live in. It wasn’t meant to be lived in year-round. I’m told some people do live in them year-round, permanently parked, in Florida. Where it’s warmer. Cold unfortunately makes my physical symptoms worse, so in winter I’m barely functional and sometimes can’t even care for myself.
The water comes in through an external junction. There would be no other way; it’s an RV and moves around. When it’s below freezing the water has to be shut off and drained so the pipes don’t freeze and burst as they have on two unfortunate occasions. I keep around bottles and jugs to fill up with water to get through those hard months.
The wastewater tanks have to be dumped and flushed weekly. I learned a lot when I moved in here from online forums and sources of information. It was a process of trial and costly error to finally develop a system that works, even if there are a lot of things broken about it. The wastewater tanks can’t be left open or buildup results very quickly, even with special quick-dissolve toilet paper.
An RV that’s mobile has more options for dumping, flushing, and getting that buildup out. Like taking it to stations where the tanks can be hosed off, or putting ice cubes and water in the tank and driving around to agitate the water and knock off the walls.
As it is, the buildup and elderliness of the tanks system has broken parts so there are many things I can’t do with it, some jury-rigs I’ve had to wrestle to make it work at all. I’m lucky to have a working shower, water heater, sinks, toilet. But it’s a lot of work, a couple of rather nasty hours a week at the dumping and flushing. It attracts bugs, including wasps who try to nest and sting me while I’m at it, and a lot of flies. The hoses break down, and I try to make them last as long as possible with duct tape. I try to make everything I can last. Being poor is not for the squeamish.
In the summer mildew and mold builds up in the RV. I’ve got a big dehumidifier that takes up most of the kitchenette. I stopped hauling it in and out a while back because the stairs are steep, it’s too unwieldy and heavy, and storing it elsewhere is a problem. There used to be a smaller dehumidifier in here that drained into the sink, but this quickly filled up the wastewater tanks when left alone.
I use poison bait traps to keep the mice down. Even so, I can’t keep my silverware in the drawers because that’s their favorite bathroom. Electric turquoise mouse poop on the spoons and knives means washing everything by hand laboriously. Sometimes they get in my underwear drawers too. There’s a lot of storage space I just don’t use to cut down on dealing with that.
Every once in a while five-inch-long slugs will crawl in through the vents. I usually discover this in the middle of the night, half-asleep going to the bathroom and stepping on one. Yuck.
Usually in the summer not a lot of ticks get in, but since regular exercise helps with my chronic pain when I go for walks I’ve got to do a tick check every time I get back. I have a set of tick pullers for the many times I’ve had to remove them. I really don’t need Lyme disease or Rocky Mountain Spotted Fever on top of everything else.
It can get stuffy in here. I like to air it out when it’s warm enough, but the screens aren’t efficient at keeping mosquitos and other stingers out.
Many things in the RV just don’t work, can’t be repaired, or when they break I may not be able to afford to fix them. I can’t afford gas for the oven and range. But since my energy’s usually pretty low I prefer low-prep food. And the oven makes a good mouse-proof storage for dishes.
I’ve made the best I can of a bad situation. I’ve been isolated from anyone safe and worth knowing for the vast majority of my life and usually been stuck wherever I am because of lack of funds to move.
I hate living here. When I say that, people usually ask why I don’t just move. Well, because I’m economically screwed. Thanks for drawing attention to my vulnerability and rubbing my nose in your economic privilege and how you get to choose where you live.
The regular drive back out here often provides me a lot of time for a sinking feeling of fresh failure to get out of here, to escape this depressing gravity well. It triggers reminders of years of isolation, abuse, and neglect. I often feel helpless and hopeless.
I experience what I call reverse nightmares. No matter how bad and grisly my dreams get, they’re an escape from this reality. They’re something different. I don’t experience the day-to-day awareness of my unwelcome living situation. But what I wake up to is far worse and more inescapable, a sense of powerlessness and feeling trapped, every morning, that sometimes just paralyzes me. Even with all the effort I can muster, year after year I’m stuck here.
These days sometimes community support team members have driven out into the woods to work with me. Some would talk about how beautiful it is up here. But where they see natural beauty, I see my captivity. I see my nightmare.
The Best of Bad Choices?
Even given all the problematic and hellish aspects of living here, it’s still the best of bad choices for me. I know after all that, it sounds ridiculous! Let me explain.
I know myself really well. I’ve survived a lot of awful living situations with other people, who have abused my trust and boundaries. As unsafe as I feel here, I would feel more unsafe if people had unblocked access to me while I sleep, because of things people have done to me in my sleep ever since I was a child. Especially from people I was supposed to trust, who were supposed to love me. (Here’s something I wish someone had told me way back when: if you’re afraid, it’s not love. No matter what they say.)
Other people might make other choices. I know what’s best for others isn’t necessarily best for me. I’m the one who has to live with these choices. I’m sick of being judged for them.
If there’s one thing I wish economically privileged people would stop doing, it would be to stop judging choices they’re not impacted by and give the floor and the mic to those whom it does impact. How you feel hearing about it is not the same as how we feel living with it, any more than me hearing that you have cancer should be treated with the same medication, therapies, health care that your actual cancer is. And given limited resources of time, attention, and energy, which is more important, treating the problem or treating how we feel about the problem? Making you feel better about your cancer versus eradicating the cancerous cells killing you?
Dear people who do this: please stop trying to make me or you feel better about the situation, and stop draining and derailing my time and energy with that conversation. Feelings are important, and I have a lot more to say about that. In the case of being actively hurt by something, it’s more important to stop the thing that’s hurting than how I feel about it.
People who compulsively rush to give me advice are usually those that are the most ignorant of the realities of my situation. I’ve worked for years with community support teams and social workers to try to better my life. I know a lot more about my situation than people who don’t have to live this way.
I’ve heard horror stories of nearby shelters and group homes. Living homeless—even invisibly homeless—is traumatic. If one isn’t mentally ill to begin with, the disregard, invalidation, and pains of such a powerless life can send one over the edge. I don’t fancy the thought of living in close quarters with other desperate people, even if it weren’t for the dodgy things the overworked and underpaid staff also do sometimes to those stuck there.
I’ve been preyed on several times by economically privileged people who offer a place to stay—but not an equal and respectful relationship, as it turns out. I couldn’t even talk with them about their power over my safety and basic needs. Gradually I would find every part of my life monitored and judged more and more, and my boundaries gradually violated and invalidated more and more. Even talking about these behaviors and setting boundaries and saying no can offend such apparent benefactors, and cause more abuse in response. I was left again and again with only one way to enforce my boundaries and protect myself, which was to leave. I have a lot more to say about when apparent charity is nonconsensual and abusive. But that’s for another time.
With my history I have a severe phobia of being trapped by other people and unable to leave. Having my car blocked in can lead me quickly into feeling cornered like an animal. I have had lifelong fears of being smothered to death by people. Being physically restrained sends me into a flailing panic. Even people supposedly joking to me, “You can’t leave” feels threatening. Because to me it’s not a joke. Not at all. Not ever. No.
My worst nightmare would be getting involuntarily committed to a mental hospital or psych ward. At times when I’ve been suicidal I’ve been too paranoid to even call a hotline out of fear of being traced and picked up. My fear is that when trapped I would go batshit, frantic to leave, unable to be reasoned with in my terror—like I do when I feel trapped. I fear I’d be drugged, restrained, or even shocked against my will, recreating childhood trauma and making me even more frantic and apparently insane to the staff. The monitoring and control over every aspect of my physical body and life would make that even worse and recreate more childhood abuses. I’d rather die than ever be committed.
This unfortunately makes it hard to convince people that I really am disabled by Complex PTSD. Social Security Disability looks for hospitalization records to prove severity of mental disability. It’s the disabling condition itself that keeps me out of those places. I think they’re problematic places even for sane people to be.
So, for a place to live, I’m left with only bad choices. I’ve chosen the least painful of them, while doing my best to find something better for myself. Year after year. Making the most of what meager services I qualify for. Being proactive. It’s a fight just to survive and take care of myself.
Disability Does Not Equal Free Time!
I’m so angry that when I’ve tried to talk about this, the shit most people say to me in response never makes anyone feel better except maybe themselves. It’s often so ignorant, invalidating, unsolicited ignorant advice that rams home for me that they’re not going home to this, and waking up to this nightmare every day.
Even other disabled people I’ve met aren’t this bad off. Many of them have the invisible privilege of trusted family and friends to support them. Without those things I think people in my position tend to be even more trapped and isolated than me, without even internet access and the tools and willingness I have to speak out. I think the luxury of energy and free time to socialize is something that abled, economically privileged people don’t think about either.
For the record, my disability doesn’t mean I have nothing but free time, as has been said to me. I spend most of my time and energy taking care of myself and coping with pain and other invasive symptoms. If you look at me and just see my lack of employment, maybe it’s easy to think I’m rolling in free time, when I struggle even to take care of myself. Think about it: I’m caring for a disabled person, and at the same time I am that disabled person, with no help or relief in sight, 24/7. When my symptoms are at their worst and I have the greatest need, that is when I’m least able to meet my needs.
I can’t afford caregivers. And I can’t trust offers of help from friends. That’s often been the starting point of a lot of abusive situations for me, when my disability and pain makes me easy prey for someone who wants to loan shark me and feel good about themselves for helping such a poor unfortunate soul. That’s not respect. Not to me. I resent being used as a prop for someone’s ego.
I doubt I’m the only disabled person who’s ever had to deal with this, since it’s happened to me so many times, often in the very worst times in my life. It’s like looking back and seeing only one set of footprints in my darkest hour because all my friends climbed on my back, demanding attention and to be made to feel better with their discomfort at seeing what I was going through.
I really don’t think anyone was conscious of what they were doing to me. But that makes it all the more scary and frustrating, because if someone isn’t doing something consciously, I can’t talk to them about it without getting rebuffed by total denial and offense that I should accuse them so. And they can’t stop. And the only way to protect myself is to stay the hell away from them.
Accepting major assistance can change the power dynamic of a friendship. Money changes everything. The friendships I care about, I care enough to try to keep money and charity out of it. I want to try to ensure that equality, mutuality, trust, and respect are there for both of us, and that we can find other ways of expressing caring for one another than money and goods.
Validation, empathy, compassion, humility—you can’t buy these things, but to me they’re more valuable and loving than all the wealth in the world. Those I love the best exude these things like lighthouses, and it brings tears to my eyes that such wonderful people exist. If you’re out there reading this, I hope you know how much I love you and how much of a miracle you are to me. I am inspired by being able to connect to you so deeply even though we are far apart.
How We’re Socialized to Fail at Empathy
I hate how hard it is to vent my everyday frustrations safely, especially face-to-face. I feel resentful sometimes when I listen to more economically privileged people with whom I’m trying to be friends, who complain about luxuries I can’t even afford, and then they aren’t simultaneously validating of the struggles I live with. I realize, too, that other poor disabled people who don’t even have what I have could rightly resent my complaining on those same grounds. After all, I was once ignorantly privileged and middle-class and sleepwalking through life, and a lot of my complaining could very well be informed by (or straight-up) whining at not having those privileges anymore.
Everyone loses the Pain Olympics and the Oppression Olympics—where people compete for who has it worst. But at the same time I know it doesn’t feel safe and equal or in any way respectful if someone who isn’t struggling to survive compares their struggles to pay off their kids’ college loans with my hardship. Those financial struggles don’t rob a person of dignity, safety, agency, and threaten survival. They’re a different situation and require different responses.
This isn’t even a supportive conversation to have. Comparing your troubles to mine, no matter what they are, is not empathy. You can’t know what I feel, and I can’t know what you feel. I’d like to ditch comparison as the well-socialized fake empathy substitute it is and stop behaving like we’re competing for some scarcity of pity or compassion or caring. It brings a needlessly competitive air to a place of severe pain, where it has no business being.
There are better ways to be a friend than imagining how you’d feel in my shoes—we all wear different size and shape shoes, for frak’s sake, so what’s comfortable for you isn’t for me. Intellectual understanding blocks empathy. So even though I’ve expressed the details of my living situation here, I must warn you that you won’t be able to use your intellect to feel into where I am. And that’s okay.
Breaking the Silence
I don’t want pity. I don’t want to be made to feel better—this is not an acceptable situation and I need to fight it to survive, not become complacent. I don’t want opinions on my life choices. I don’t even want charity. That’s problematic. And I’m not one charitable act away from turning it around.
What I want is to be heard, seen, and to not have to take care of your feelings that arise from hearing and seeing me.
I’m tired of feeling ashamed and insecure about this. I’m tired of hiding it, that reinforces my sense of shame and insecurity. But I’m also tired of sharing this with people who also, if unconsciously, reinforce that shame and insecurity when they try to give me advice they’re not equipped to give out of their own discomfort, or start comparing, or trying to ‘make me feel better.’
I recognize the benefits of working to defuse my insecurities, but I also recognize that it’s not safe to be doing that work in places where people come clomping around insensitively. bell hooks made an excellent point in ‘Rock My Soul: Black People and Self-Esteem’ when she points out that it’s difficult to build self-esteem when you have external tangible systemic forces telling you that you’re invalid and less-than, without also having tangible external forces that affirm that you deserve better, that you’re as valid and worthy as those with power and representation.
I’m tired of people who are quick to judge and interrogate every aspect of my life, as if I’m too stupid to have found something better for myself after years of this hell. I’m tired of being able to neither find validation and empathy for the pains of living this way, nor adequate respect and appreciation for what I’ve been able to do with what I’m stuck with. Those things that I find so essential to true respectful relations between people seem to be beyond many I meet who are more economically privileged than me. So I’ve got to be careful what I say face-to-face.
I’m sick of being silent about this, and feeling like I’m going to explode with all this unexpressed stuff in me. All because of the discomfort of people more privileged and powerful than me who don’t use a little bit of that to practice humility and real compassion when they encounter someone like me.
Now You Know
So now you know about how I survive and some of the choices I have to make. Now you know why I hate it when people ask me where I live. Even if I demur, people being people, they fill in the blank and guess why I don’t want to answer. And that unconscious judgment affects how they treat me. People love to solve a mystery, but quite often can’t handle the truth.
This is information that I’m not comfortable sharing with someone I just met and may never be comfortable talking about it. A simple thing like where someone lives may not be overly personal to you and people like you, but I’m different. I have a different boundary here of where things are too personal to discuss. Most things, in fact, which is why I don’t want to waste my time and energy on superficial friendships.
So why am I confessing all this on the internet? Because this is consensual. I made a choice to write this, and you made a choice to read. I get to show you the truth, and if you don’t like it, you can just click away. If you say something I don’t like, I don’t have to respond, and all the rest of the people reading get to see your words too.
It brings all this shame and truth out into the light. It gives me room and time to share my own words without being censored or silenced. It opens up the possibility for finding people who can express true compassion and respect to those beyond who I encounter face-to-face around here. If there’s one thing that online activism has taught me, it’s not to settle for fake allies just because they’re all that’s present, but to keep seeking real support.
I was reminded at the National Organization for Women’s annual conference, to which I got a scholarship (thank you D.C. NOW!!!), of a quote from Gloria Steinem—“The truth will set you free, but first, it will piss you off.”
Concerning Those That Have it Worse
A lot of people in my position don’t get opportunities like attending that conference. Many people are worse off than me. So I want to fight for the opportunities I can get to speak out and make a point of using them.
I want to acknowledge that there are a lot of poor people who don’t even have the privilege of participating in these conversations because of time, money, transportation, and other constraints. They don’t get to speak out in conversations that directly impact their lives and their basic needs.
I don’t speak for all disabled poor people, but I can say that we need more of those voices in this social justice work that we do. The needs can be steep and costly, like child care, disability accommodations and caregivers, transportation, funding, time and energy taken up by work, internet access, scholarships, bringing the conversation to them, extra effort and sometimes translators to understand, advocates with experience living or working with these levels of poverty and disability. If we’re not including them in our conversations and activism, we need to at least talk about why that is, and use what privileges we have to raise awareness and raise up those absent voices.
If you’re still here after all this, I really really want to thank you for reading to the end.