It Is Expensive to Be Poor – Barbara Ehrenreich – The Atlantic.

It’s not often a traditional news outlet online has a decent article, but here it is.


Alright Internet, sit down. We need to talk about something really important. Namely, the context and connotations of what happened here.

I hadn’t read the original essay until today. I’m glad, though, ’cause I would have written it off. I would have pointed out right away that it sounded phony. No one I know who has been poor has “unstructured thoughts” that sound like this. There’s no prefacing, there’s no carefully crafted separation between systemic and academic problems. That’s not an off the cuff thing, not without a lot of training on writing papers. That’s just one of many things that stick out to me, things that sound like affluence call backs or the kind of refinement a poor kid puts into their essay to sound smart. Things like the use of “some time” in the opening of the third paragraph. It doesn’t read like a poor person to me, and I live in an intersection of being poor and having a good education, being poor and being fairly intelligent, and being poor but coming from a once-solidly middle class family.

Is this a problem? Is her lying, itself, a problem? Well, yes and no. No, for the most part, because the issue isn’t her essay. If she was honest about this being a fantasy exercise, a sympathy exercise, it’d be fine. This is a gross misunderstanding of most people’s lives who live in poverty but if she’s trying to raise awareness or become more sympathetic, it would be a fine exploration of fantasy. The part where it becomes a problem is when she claims that this is a real telling of events, a true story snatched from her life, where she clearly had time to refine her writing in the midst of being able to sleep for only three hours a night. It camps out in problematic territory when it’s clear to anyone who has been poor that she clearly hasn’t but is claiming this is real.

Now, to restate my credentials here for anyone who hasn’t been following along – until August of this year and from February 2011, I was functionally homeless except for a five month stretch where I rented a room at a friend’s house. I became homeless after I lost my last IT job and my until then unknown disability reared its ugly head and I found out that I can’t drive anymore without endangering myself and others. While I was on unemployment insurance, I housed my mother, my youngest brother, my cat, and myself in weekly motels. Until we got kicked out on the 4th week at one and couldn’t find another room, then we lived out of my mom’s van. My childhood with my mother was pocked with poverty – she was trying hard to rise out of being poor, out of being supported primarily by my grandparents, but the deck was stacked against her between her depression, her PTSD from her relationship with my father and my youngest brother’s father and a drug addiction that he caused. My entire life has been one of survival since high school, the last time I can remember doing any kind of real formal education.

I know poor people. I am still, technically, a poor person. I am invisibly disabled with no diagnosis. I recently got healthcare, but it’s an awkward healthcare where I wait about a month between doctor’s appointments. I haven’t seen a dentist in over a decade. I have no income and I spend part of every day in pain that I can’t control. I still can’t drive without being very cautious. I live day to day because that’s what I’ve always done. I enjoy what I can right now ’cause I don’t know how long I’ll have it for.

Even I, however, knew how to cook broccoli when we were homeless. Nearly every homeless person I know has known how to cook. Some of the best steaks I’ve ever had have come from people in poverty because when they treat themselves, they know how. Want to know why we don’t eat more veggies or fruits when we’re homeless? They’re fucking expensive.

That’s where the fact that she’s playing this off as a real story becomes an issue (before we even get into the biggest problem here). She’s perpetuating myths about what it’s like to be poor that reinforce delusions of us being subhuman – being uneducated, being unaware of real life, being trained in “bad logic” that prevents us from being healthy and happy, working better jobs, or eating better. That if only we knew to buy in bulk, eat cheap vegetables, save money, we could rise out of poverty somehow. Well, it turns out that this isn’t true. Most people in poverty that work at least one job are not idiots, they’re not uneducated savages scraping by on cheap cheeseburgers from Jack in the Box and buying lavish sneakers and televisions. This is a fantasy concocted by well meaning liberals to create sympathy, latched onto by cynical conservatives to damn the poor, and perpetuated by rich children who have never seen an actual poor person in their life. At least no longer than the amount of time it took to quickly walk past them, maybe drop a quarter infront of them, and get away form the stench of the masses. She was never poor and it’s disturbing to me that she thinks she can speak for me, for us.

Going past disturbing, though, in to full blown anger is the fundraising campaign. I ran a fundraising campaign here, as many of you know. I wanted to raise two thousand dollars, a paltry sum in the grand scheme of things, to not be homeless anymore. A magnificent goal, one I’m quite happy I met, but even then I was accused of lying and that I wasn’t “desperate enough”. This woman, though, lied about being in poverty, uses these codified “I am secretly rich” linguistic signals, and she’s raising $150,000 for a surgery she doesn’t want to pay for, for teeth that look totally fine. I’m sure she might actually have a medical problem but my teeth are disintegrating in my mouth and I have a massive cavity in both of my upper canines, right in front of my face. My teeth are rotten and I can’t raise that kind of money. I haven’t had income in almost a year and I can’t raise that kind of money. I was homeless and I couldn’t raise two thousand dollars without being harassed. This woman, on the other hand, writes a false essay and has raised over sixty-thousand.

This is what disgusts me. She is exploiting the poor, the image of the poor and a false understanding of the poor, to raise money that she doesn’t need. Not only is this taking sympathetic money from the hands of people who desperately need it, people like me and who are worse off than me, she’s making it unlikely that those same donors will ever help someone who’s actually poor. Why should they trust my story, or anyone else’s story? They, who have the luxury to be picky about who to give money to, will feel cheated if it turns out that I’m not as poor as they thought I was! There are these stories of wealthy panhandlers, stories of people with good jobs pretending to be homeless to save money, and then there’s this woman, a society elite and political scholar who used a false poverty essay to raise money! Why should they help the needy? Or, rather, how can they tell if the needy are actually needy?

This woman is poisoning the well of altruism and charity. This is yet another subtle attack on poverty, on undermining the poor and reducing our status in the eyes of society from that of human, of peer and compatriot. I am a swindler and a thief, a liar and a malcontent, lazy and disreputable. All because I have no money. In a society that already equates morality with the size of your bank account, it does no one any favors when the wealthy start pretending to be poor to raise money. Nor does it help anyone when they succeed, despite their audacity, while people like me whither, starve, and die.

Please, if you want to help the poor, start at home. Find the actual poor people around you and talk to them about how you can help them. Ask them what it’s like to be in their position. Don’t just listen to people online about it, don’t just listen to news reports, don’t just read the emails that get forwarded to you. Help the actual people, struggling and starving, in your community.

Normally I’d ask for tips or donations at the end of an article that was this exhausting to write, but I’m not doing that this time. I’m simply too disgusted by this whole situation to think about putting myself in a similar light in any fashion. Take that money to the people in your area that need it instead. Not the organizations – the people. They know how best to use a little bit of money, that’ll make their lives easier and better. Believe me, they do.

A Novel Experience

November 4, 2013

The strangest thing happened to me today.

Someone listened to my heart and asked me how I’m feeling. Someone checked my blood pressure, my weight, and asked me about my pain. Someone gave me advice and prescribed me medication.

I saw a doctor today, for the first time in over a decade, for regular care. I’ve seen urgent care physicians in that time, I’ve been to the ER in that time, but I haven’t had a regular doctor.

Today, however, a doctor saw me and evaluated my health. Made suggestions to make it better. Ordered xrays to examine my hands. A doctor evaluated where I am and what I’m feeling to get a sense of what he can do to help me.

This is strange to me. My family has had a hard time caring for itself since I was young and the realities of a bad divorce tore us apart. Legal bills came before medical bills and, while I always got the shots and checkups that I needed, whenever we were sick or hurt the first recourse was family practice. Herb teas and idiosyncratic sayings from Kansas and Minnesota. When I was sixteen I left my mother’s house to live with my girlfriend. I was stifled at home, my mother couldn’t care for me, and I slept on the floor. Even before then I had stopped having access to regular medical care. I knew I had asthma. I knew I had some kind of neurological or psychological problem. I knew I already had a back problem and regular pain in my hands. I didn’t know what caused it, but I knew how to work around it. That was the defining aspect of my healthcare for the rest of my life until now – figure out what the big problems are and deal with them. Treat them as best I can but for the most part get back to work.

This was how my life worked for ten years. More than ten years. I could never afford health insurance while I was working, since I basically took care of several people on top of paying my own bills and feeding myself. Even when making nearly $41,000 a year I still couldn’t afford health insurance while living in Southern California. I haven’t seen a dentist in longer. When I had infections before I was 25, I borrowed my dad’s health insurance (since we share first and last names) to go to urgent care for medication. After 25 when I got a bronchial infection I bought antibiotics from a friend of mine that happens to deal in a wide variety of pills. Because I knew his were safe, I knew how much I had to take and of what, and they were cheaper from him than going into the healthcare system at all without insurance.

The insurance I have no isn’t phenomenal. It isn’t the cheapest it could be. It doesn’t cover everything, like dental isn’t covered at all. It is, however, better than nothing. I have healthcare, and I saw a doctor. What is a right in some places, basic access to necessary and affordable healthcare, for me is a novel experience. Something exciting, something special. The idea of having a morning where I don’t wake up in a haze of pain and frustration is exciting. Of having days where my back isn’t aching constantly is electrifying. Of being calm and collected and able to focus again is edifying. My world, my entire existence, is dominated by the constant experience of pain and the management of pain. Pain that doesn’t have the validity, the comfortable fact, of having a reason for happening. I don’t have a disease or condition that causes me pain, a system of faults or flaws in my body that causes predictable pain. I don’t have an injury or illness that causes the pain. No, my pain is a phantom pain – different every day, traveling around my skin in lightning flashes that delve deep into my muscles and joints. Pain that causes me to flinch at the feeling of the air on my skin. Pain that can strike at any time and leave me in a quivering mass on the floor and unable to do anything but breath slowly and hope it passes. My life, for at least the last three and a half years, has been pain. With no hope in sight of ever seeing a day without it.

Now, though, I can dream of a day without pain. This is the sweetest, most loving thing my partner has ever given me – hope.

One year ago I started the path toward getting disability benefits. I did this under the false assumption that it would be a simple matter of time. That my disability was outwardly invisible to most people but, if you listen and if you hear what I go through, it’s obvious. I am a broken man, compared to who I was three years ago. While my heart and, in many ways, my head has been healed by the compassion of a precious few who have saved my life from the very brink of despair, or worse, my body has continued to deteriorate because I do not have the resources to do anything else. I did not have the resources to avoid an accident the last time I drove my own car. I did not have the resources to treat my ever increasing joint pain for most of my adult life. I did not have the resources to look into why I would lose control over my basic motor functions and fall over, collapse, throw things, or shake so heavily it can only be described as a seizure. I did not have the resources to do anything about my homelessness, my decaying teeth, my hunger, and my constant pain and fatigue. I did not have the resources to take care of my mother and my little brother, who I had been supporting with my last job.

I did not have the resources to do anything but suffer and hope that I did not fall. I suffered through it because sacrifices are made by the strong so that they may feed the weak. I suffered through it because pain and fatigue are the marks of a struggle, of a burden born, of a noble life where nothing was wasted and quiet dignity was taken in doing what was needed because there was no other way. When that failed me, however, I did not have the resources to do anything else. Health care was always too expensive, let alone dental or vision care. My family was unable to support me. My friends were unable to support me.

And, as I have learned, when I was in pain and unable to work, when my joints had deteriorated and I could no longer do what I was trained to do, when I was in constant pain for the mere crime of being born in this body and living through trauma no one should go through, I learned that all of the time and energy I had put into supporting Social Security, all of the money I had put into Social Security, was not there to support me either. My state failed me, and it failed me in a way far worse than those around me who do not have the means, and sometimes do not have the will. It failed me by ignoring me, by forgetting me, by brushing me off and treating my pain and suffering like the act of a desperate man with other options.

I learned that when I come into a legal decision-making space shaking like the last leaf on the autumn tree in the face of the winds of winter, when my knuckles sound like old and dry bones falling into the crushing gears of a mechanical band saw, and when my mind is so spotty that my girlfriend must correct me on exactly how bad my condition is I am not disabled enough to be believed. I am not medically severe enough to be considered disabled, because there is not enough medical information to say that I am disabled.

I sat down to ask a series of questions here, to complain about something specific, to pour my story out and let the readers see this, to do anything to feel like I am in control. I am writing through fits of pain, through shuddering lances of searing electricity shooting up my fingers, because I cannot do anything else. Since I was a teenager I found solace in writing. It’s how I’ve kept my sanity, it’s what I’ve used to teach me everything I know, it’s what’s made me different. I adore the written word, I obsess over the written word, and I find a place of love and acceptance in the written word. Now I find that it is this exact obsession that has plagued me so desperately in this case. Because I am not a simmering simpleton I am clearly of clear mind at all times and able to operate as if I am not disabled.

I want to through academic words around here and go on a righteous rant about how this is clearly an intersection of classism and ableism, a place where those who are disabled are demonized for conforming to the society around them and keeping a “stiff upper lip” as well as never having the resources to show weakness. I want to explain how to keep your job in a tough economy, in a cut-throat industry, you have to be better than everyone else and cannot have flaws. I want to pound the point that I was not allowed to consider my pain and fatigue because “work is hard for everyone.” I want to plead for everyone to understand that I was told that this was common, that everyone felt this way, and that when I got home my utter inability to do anything but sit at my computer and breath slowly was what I was told to expect because it was my life and everyone apparently had a similar life. I want to show you how I curled up in bed at night after work every day, in so much pain I wanted to cry but I no longer had the energy. Only to wake up the very next day and do it all over again. To suffer and drive myself because that is what I must do.

Sacrifices were made because sacrifices were expected.

I am not going to throw around big words with complex meanings and long, sordid academic arguments though. This, clearly, does me no favors. Since I am capable of complex reasoning, it’s impossible for me to have moments where I cannot focus. Since I am in possession of an expansive vocabulary and the will to use it, there will never be a situation where I forget common words like “pants” or “sponge” or “knife” or “key”. It is completely impossible for me to have a neurological condition that causes pain, forgetfulness, and periods of dubious consciousness and still be a genius. As we all know, every genius in history was possessed of an incredibly sound mind without a single hint of neurological disorder or disability. Perish the thought that even the bright and seemingly capable can still be afflicted.

I am also not going to be hammering on the point that I live in a world where healthcare is still out of reach for people like me. Where doctors are not available to see people like me. Where my health is a commodity that I must pay for, a product that I must scrimp and save to afford. A product, mind, that in the grand scheme of things falls after those things needed for survival – food, housing, education, transportation, utilities, access. I am not going to explain how what some people see as luxuries, like access to the internet or competitive computers, are required for employment in the world I was in as an IT technician. That in order to keep up with my industry I needed to be constantly educating myself, staying on top of news in the industry, and expanding my skillset at every opportunity. Which took money and time. Money and time that could, theoretically, be applied to health care. Health care, though, was less important. My health, a working body and mind, was a commodity that was just too expensive. I told myself it’d be fine once I got into a good job. A job where I was making closer to six figures as an IT administrator or a network engineer. A server-side job where I could focus my skills how they were useful, a way that didn’t burden my mind that couldn’t handle constant customer and user interaction and incomplete fixes that I found in the phone-based IT support world. A place where I could work at my own pace, deal with my occasional inability to focus on anything for an hour or so, and interact only with other technically trained individuals who would understand what I was talking about.

I was hoping that I could pay for my health after all the stress had gone away. That is, until I lost my job because I couldn’t call people anymore. Because I looked at the phone with fear and anxiety, the kind of fear and anxiety that some reserve for spiders, snakes, tigers, and clowns. I had learned to see calling out as several minutes of heart-pounding anxiety followed by several moments of high blood pressure and fear, followed by a quick anxiety attack as I realized that who I was calling was not on the other end and I would have to do it all over again. A process I was expected to repeat every fifteen minutes, if not faster. I lost my job because my work suffered, my notes became sloppy, and my calls included dead space where I stopped responding for a few minutes before the person on the other end got my attention again. I sounded confused. I sounded lost. I sounded afraid.

I lived in pain for as long as I knew what work was. First it was my back, my lower and middle back. I had problems growing up with falling on things or being hit by things. Sometimes the fists of adults who were supposed to protect me. Sometimes it was the fists and feet of my peers. On a few occasions, it was the fists and feet of my friends. Once, a man who said he loved my mom and loved me dropped me on the arm of a couch. It may have been by accident, I don’t remember. My lower back, however, does. When I was a child, I could dislocate any of my joints pretty readily. Now they do it on their own and I slide them back when I can. My thighs and shoulders are constantly sliding around. Almost connected but not quite. My knees crack softly when I straight my legs. My ankles and toes and wrists and fingers crinkle and crack like a popping fire in slow motion when I move them. I can feel them, my bones, rolling around under my skin. Seeking the right place when they’re not shaped correctly for their homes anymore. This goes all the way through to my ribcage, which I have cracked. I cracked it earlier this week. I will crack it next week. This is my life. This has been my life for years.

What did I do to treat this pain? I ignored it. I drank occasionally, mostly beer from a nearby gastropub. I would limit myself to beers I had not tried yet. I focused on their sublime qualities, of the escape of being knowledgeable and insufferable about something. My first crutch was genius and obsession, and it will always be my favorite crutch. I defend myself from my fears and anxieties by knowing things, by examining things, by learning things. I hide from the pain and fatigue and oppressive weight of stress and anxiety and expectations by being smarter than everyone else and reveling in that fact. I have done this for as long as I can remember, having grown up with the narrative that the intelligent, that the crafty, that the wise, and that the cunning were all more deserving of respect than the strong, the able, the tough, and the stoic. Yet, through this very message, I became the strong and stoic, the tough and able, the man of quiet dignity and sharp wit who winced when he sat down or stood up but otherwise seemed like a near-encyclopedia about information that was of no value to anyone but him.

Notice, again, that no where here did I treat the pain with doctors or medicine. I could never afford doctors or medicine. I learned to deal with it differently, to soldier through it as best as I can. I was abused as a child. I went to a mental institution when I was 12. I was sexually assaulted in the group home I went to after that institution. I was ostracized by entire life by one group of people or another. When I was a young child my only friends were those who were on the outside like I was, the people of color and the disabled and the nerdy and the haunted. When I was a teenager my only friends were two boys named Matt who were so different yet uniquely the same – they were both emotionally fragile, emotionally disturbed, and knew no one else they could identify with in any way. When I was sixteen I left home with my then-girlfriend because my mom was in a constant stupor over a drug habit she could not fight effectively. My family was at war with me, a war that never ended on some level. A constant pressure to conform, to be normal, to stop being in pain and to stop having feelings. To stop crying and demanding respect and care. To be quiet, and good, and respectful, and happy.

So goddamnit I was happy. I made myself happy. I made myself smile. I learned to let my emotions roll through me. Did I suppress them? Bottle them up? No. I never had them to begin with. When I ran out of energy to even have emotions when I was in pain and no one helped, when I was shouted at for caring and for feeling something, when I was too human to be respectable anymore I learned to no longer have emotions. I learned to be cold and distant. To hide my pain in indifference and quiet. To become withdrawn and invisible. To become small and quiet and disappear as if I were made of naught but dust and shadow. I learned that you didn’t deal with pain through anything but stoicism and strength. That you let it roll through you and you marched on regardless.

From the very moment I could have health insurance, it was too much for me to afford. I had bills to pay. I had an education to pay for. I owed money to people for things I needed before I could take care of myself. I walked into my adult life with debt and it’s never left me. Debt that constantly haunts me and tells me I need to make more, save more, do less, survive with less. I don’t need to eat so often, I don’t need those clothes, I don’t need to repair that part of my car, I don’t need that book, I don’t need healthcare. I’ll deal with it. I’ll handle it. What I need is to pay my debt, keep my apartment, make sure my family isn’t starving and homeless, and keep educating myself for that better job. That job that’s just on the horizon, that job I was promised my entire life. That job that my parents and grandparents and teachers and educators and principles and politicians and strangers and employers and the very economic system promised me I’d have.

I was told I would never have to worry about being poor. About being homeless. About starving. I was told to go to school, go to college, get a job. I was told that I was a genius, that I wouldn’t have to worry about anything. That my grades didn’t matter much because my test scores were always among the top in the nation. That everyone was dazzled by just how smart I was and how much potential I had. I was going places.

Well, I was going places. I was going places until the economy started failing people like me and the best jobs for people like me, people with years and tens of thousands of dollars of training finding part time work at $12 an hour in dense population centers. Jobs that couldn’t support someone without loans to pay back. Jobs that couldn’t pay for standard living expenses of one person, let alone help anyone else out. So I borrowed more, I lived with friends, I sacrificed my health care. I did all I could to survive. I didn’t go to a “good” college – it cost too much money and I left high school early. No one gives scholarships to people with the California High School Proficiency Certificate. Or, if they do, no one told me. Not a surprise, though, no one told me anything. I just kept doing what I was told to do – chase jobs you knew you were qualified for, be honest, be yourself, don’t smile too much, don’t be depressing, and work hard. Work as hard as you can.

I did everything right. I still didn’t get paid enough and, when the people in power in our economy ruined the world, I lost my job along with everyone else. I lost my home. I lost my happiness and my sense of self. My place in the world. I looked for a new job, despite the fact that I was beginning to get constant back pain. Despite the fact that I would zone out for hours at a time when I was depressed without being able to control it. Despite the fact that I would wake up with my heart pounding in my hears and gasping for air for no reason. I didn’t have healthcare – when you don’t make enough money to live on, when you don’t make enough money to pay for health care while you’re working, you don’t make enough money for COBRA coverage. When I found another job, a job that paid even better, I went back and did the same thing. This time, however, I also had to care for my mom and my brother. They were homeless because the system failed them too. My family failed them too. She wasn’t on drugs anymore but it affected her. It left her broken and afraid. I couldn’t let her just waste away. I couldn’t just shut my love and respect off there – she had raised me, through my anxiety, through my awkwardness, through my abuse, through my prattling about things that weren’t real or understandable, through the episodes that would get me labled as Borderlines Schizophrenic at the tender age of twelve (a common occurrence, as it turns out, for people who are on the Autism Spectrum). Once a week, she would drive three hours to bring me a candy bar and a sibling. To remind me I wasn’t alone. I owed her, so I did everything I could for her. I sacrificed my health for her.

Sacrifices were made because sacrifices were expected. I was trained my entire life, by every system I ever encountered, to sacrifice. That I was strong, that I was capable, that I was powerful. It was my responsibility to sacrifice. To do my fair share as well as the shares of those less capable because they deserved dignity. Respect. Help. Because they were still people.

This is why we pay taxes is it not? To help those who cannot help themselves? To be there where god and family have failed? To provide a safety net to those who are torn asunder by the vagaries of an uncaring market manipulated by callous individuals who are indifferent to the suffering of the poor, the disabled, the outcast? This is what I was told my taxes were for. That the Welfare State was created to help those who really needed the help. Sure, there might be some people exploiting the system, people fully capable of work, but they got on first then were found out. That was the system – false positives were preferable to false negatives. We’d never knowingly kill the disabled and the poor by telling them they weren’t poor or disabled enough, right? We would never create a downward spiral of homelessness, starvation, pain, suffering, and erasure by telling people who were suffering from legitimate pain that they were not, in fact, measuring up to our standards of “impoverished and suffering” despite being impoverished and suffering, would we?

We do, in fact. There is a man in Orange County who callously wrote that I am not disabled enough. That I do not conform to the strict standards of the Social Security Administration in regards to what constitutes in enough pain or incapable of working enough to qualify as disabled. Despite the fact that I blacked out and struck a freeway sign and another car three years ago. Despite the fact that I am in pain right now as I type these words, despite the fact that my life is pain management now, despite the fact that when I stand up or sit down my body screams in agony, despite the fact that focusing on anything for twenty minutes is strenuous on good days. I am not disabled enough. There is a man sitting in Orange County who sat in a room with me, looked upon me with compassion, heard my joints and the explanations of pain, who heard me explain that I have lived in poverty my entire life and could never afford to see a doctor and still decided that without an extensive medical history I was faking my disability.

A man who wrote a document that said that they cannot find veracity in my explanations of my condition and my past. A document that, by stating I cannot be found disabled due to people making statements about my condition and “being obviously predisposed to favoring” me, stated by implication that I was lying about my condition. That I chose to be homeless. That I chose to starve, including nearly a week of having no food at all, no money to get food, and no energy or ability to get up and move without assistance. That I chose to have seizures. That I chose to shake in his very adjudication room nearly constantly. That I chose to be able to crack my knuckles constantly, on demand, or experience pain. That I chose to leave an industry where I could still be making over $50,000 a year doing something that comes easily to me for the possibility of getting less than $1,500 a month. That I chose to be unable to drive anymore. That I chose to stare off into space, for up to an hour, without any control. That I chose to live in abject poverty. That I chose to throw objects at people I care about, throw objects that I prized or adored, throw objects that ended up hurting me and that I had to clean up because who else is going to? The only thing I did choose was to use marijuana to deal with my pain. A choice that has, so far, done nothing but help me.

Who would chose the indignity of homelessness? Of disability?

Who would chose constant pain and fatigue? Who would put the time and energy, dedication and suffering, into being treated as subhuman? As a criminal? As a liar until proven otherwise and yet still distrusted despite it all?

If I did, in fact, chose to lie then I am still disabled. If I did, in fact, chose to suffer the indignity of being disabled and pursuing the support that the disabled are entitled to for basic dignity and respect in an economy that only speaks in money in a system that sees them as an enemy and nothing more, then clearly I am so delusional that I am incapable of caring for myself.


~ Daniel A. Samuelson

Queereka | Why do straight feminists hate lesbian and trans feminists?.

Stop what you’re doing and read this.

It’s worth your time.

Skepchick | Poverty & Disability: A Most Dangerous Combination.


Oh hey look, someone wrote about me!

Cost Saving Measures

August 5, 2013

I’m disabled. It’s an insidious disability though, an invisible disability that isn’t easy to diagnose. It’s a disability that causes muscle pain, joint pain, fatigue, and a near constant haze that causes me to forget things and, sometimes, completely zone out. I’ve spent as long as an hour trapped in an unfocused, unaware state where I could interact with the world around me but I had no real cognizance of where I was, who I was, or what I was doing. The first time this happened, I was driving. I destroyed a freeway on ramp sign and struck the side of someone’s car.

To say that this is an act would imply that I am a far better method actor than I feel reasonably comfortable accepting. I cannot do Othello, so I’m pretty sure I cannot do “invisibly disabled young man.”

That accident was over two and a half years ago. I was unemployed at the time, and shortly afterward I became homeless. Given that my entire history of employment was in Information Technology, a skill set that requires a lot of typing, it obviously would not work well with the fact that my hands had deteriorated to the point where I needed to take frequent breaks to get through short paragraphs. This has affected me while I’ve written these words, in fact. I had to pause in the middle of the last three sentences to crack my knuckles and let my muscles rest to avoid excruciating pain.

Here’s the best part, though – I’ve lived in poverty my entire adult life, and I haven’t seen a doctor since before I started high school. I have no medical history as an adult, either of my normal problems (back pain, neck pain, asthma) from before I became disabled or the development of the disability. I only know that it’s (probably) fibromyalgia from the fact that my mother suffers from the exact same condition and was diagnosed with it when it was called fibrositis. So when I started down the path to get disability assistance, so I could stop being homeless and suffering, I knew it would be a bit of an uphill battle.

I did not, however, account for the Social Security Agency’s nefarious cost saving measures.

In April, I went to my first in-person hearing for my appeal. As everyone is denied in the first round, from what everyone says (even inside the SSA), it was expected that I had to appeal. They sent me to a doctor that completely ignored my arthritic condition and just saw that I had all my limbs, that my neck wasn’t terribly malformed, and decided I must be healthy. In the hearing, the adjudication judge at the ODAR seemed impressed with how my joints cracked and sympathetic to the fact that I couldn’t work because of it. In the Hypothetical Scenario section of the hearing, the second and third hypothetical situations essentially left me without employment of any kind. The first hypothetical left me with either working retail or doing reception work. I was fairly confident that I would be confirmed as disabled or, at the very least, the appeal would be a little easier to pursue.

I was supposed to receive the decision within sixty days. It’s normally supposed to be thirty days, but the ODAR was very backed up according to the judge. I called the ODAR in July, on July 3rd in fact, and I was told that the case had been closed that day and I should receive it in the mail in the next week. As I still haven’t received it (this being the fifth of August), I decided to call the ODAR today to find out where the decision is. Apparently it was mailed on June third. It wasn’t returned and my father, who collects my mail, never received it. Luckily, they’re sending a new copy of the decision to my current address.

Now, let’s go over the time line again. I was unemployment after I lost my job, but that ended a year ago. So I’ve been without income for a year, going through this disability application process the entire time. It took six months to even get into a hearing room. The hearing itself didn’t come with an immediate decision, that took two months to generate. A decision that never reached me, which means I have not had the ability to respond to it in a timely fashion. A year during which I have been homeless. I have been poor. I have frequently been hungry. A year where a single person has accepted most of the financial burden for ensuring I do not simply starve to death. A year where I have had to move all of my possessions myself between the places I could sleep. I was able to couch surf, but that’s no walk in the park when you’re disabled in a way that magnifies joint and back pain. I have had to work the occasional day doing home repairs, days that left me exhausted and in pain for days afterward, to have any money of my own.

This year has illuminated the chief cost saving measure of the Social Security Administration in regards to its disability application process – I am sure now that they’re hoping that I die, in some unfortunate circumstance, so that they do not have to award me the disability that I paid into. That I helped support. The programs that I helped vote to keep and have campaigned to expand even before I was disabled. Given that the SSA has known that I was homeless, and that I was on SNAP (that’s food stamps to most people, and those I have been forced to reapply for since I no longer qualify according to a letter my father got last month). They know I have not had medical access for over a decade. All of this is in my file.

It’s clear that in order to avoid giving me the money I need to survive they’re taking as long as bureaucratically possible, using the excuse that when I am awarded I’ll receive pay going back to when I was identified as disabled…though unless I can convince someone in the payment processing center to give it to me right away, I won’t receive it for a year. Another year I have to tell my student loan processor that yes, I am disabled. No, I cannot see a doctor. Another year where bills that have come up while I’m disabled, money I’ve borrowed to not simply starve, people who have bought things for me that I’ve needed, go unpaid. A year of having just enough money to not die, instead I get to watch what’s left of my credit and legal personhood is destroyed by creditors.

These are situations, mind, that are known to cause suicides. Which would be convenient for Social Security – they wouldn’t have to pay me, and it wouldn’t be their fault, right? They’re just processing the system using the laws they were given. Using the budget that’s been passed. Meanwhile, I’m suffering literally every day trying to navigate this system, a system built for lawyers who exploit the disabled by pursuing disability claims using systems only they have reasonable access to in order to get some of the state’s settlement money in payment.

I have to work through this, however, because I need that money. I have to dance to their tune if I want to be able to support myself in any fashion – even if I could sell my writing, even if I suddenly generated a legion of fans who donated money to me every month to ensure my bills are paid and I can eat, letting me write and work on the things that I can contribute to everyone else, there will still be days, weeks, months even where I am incapable of working. When I will need not just the money from Social Security but also the access to disability services. To doctors who treat the poor and disabled. To transportation systems that service those who cannot get to the (inadequate) buses in Orange County and cannot afford the cab services here. Until I get the settlement, as well, it is unlikely I will be comfortable enough to be able to write enough to be published, get a part time job, or find a legion of fans who can help me every month. I was amazed at seeing friends and friends of friends reaching out for my deposit, to ensure that I won’t be homeless, but I cannot ask for that kind of support every month. It’s too much, from too many people, who I am sure are not in much better places.

To many people, this is a sad story. A story that they are sympathetic to, but feel like there’s no way to help. This is my life, though. My every day experience. This is the life, or a better version of the life, of many people who are disabled. People who deserve our help, people who suffer as public assistance programs like Social Security go underfunded and are mired in laws designed to keep people who are “healthy” from “exploiting” the system. A worry that has, as of yet, not shown to be a statistical issue. A system that, by trying to keep ne’er-do-well exploiters out has encouraged people in my situation to give up due to hopelessness. A system that, from any rational perspective, seems to encourage my death to avoid helping me.

A system that is so labyrinthine that only lawyers can really navigate it – despite supposedly being accessible to anyone with a disability. A system that doesn’t have enough employees to properly go through the requests for support. A system that has artificial barriers preventing multiple entities within the same agency from working with the same data. A system that is designed to encourage false negatives rather than false positives, which leaves people to starve and suffer when it’s totally unnecessary. A system that makes crime look attractive because I would be treated better in prison than I am here because there is no support here. A system that asks those who are least able to help me, those people in my immediate context, rather than do what it was created to do. A system built on a philosophy so flawed that even our soldiers, returning from war, who are disabled have waited as long as three years for support despite having clear medical histories from their service.

At the risk of angering Constitutional scholars, I’d like to point to the Eighth Amendment to the United States Constitution –

“Excessive bail shall not be required, nor excessive fines imposed, nor cruel and unusual punishments inflicted.”

There is no stipulation here about it being in regards to criminal or civil prosecution. It follows two Amendments that state explicitly “in all criminal prosecutions…” and “In Suits at common law…”, but this amendment contains no explicit direction to being only applicable to legal proceedings. It states, simply, that no one in America shall be required to provide excessive bail, no excessive fines will be levied against them, and cruel and unusual punishments are forbidden. In any course. In any situation. In any context.

So why, given the Bill of Rights and the obvious sympathy for the plight of those that escaped the oppressive classes in England displayed in many of the arguments that created this Amendment and the Constitution itself, do we permit people to exist in my situation?

If being in a social position where I cannot work, where I have been homeless, where I have been hungry, where crime and suicide look like better options, is not cruel or unusual, what is it?

And if it isn’t unusual, is this the kind of standard that we want to encourage? Are we okay with a state of affairs that encourages the poor and disabled to kill themselves or commit crimes for basic survival?

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