Hoops

The other day I was lurking in a comment thread on an article examining how one solution to homelessness is to give people houses, much along the same idea as one way to alleviate poverty is to give people money. The thread went in a number of different directions. One was the difference between private charity (e.g., church-run) and public (i.e., government sponsored) charity. The consensus being that private charity often  involves certain stipulations to ascertain whether the impoverished person is “deserving” of help (do you go to the right church, life your life the right way, etc.) whereas public charity tries to distribute resources more equitably.

Whoa, hold on there, hoss. As a poor person, I disagree. Okay, the government may try to distribute resources more equitably, but US culture is so steeped in ideas of the virtues of capitalism and the idleness of the poor that the people making laws can’t help but spout nonsense every time they open their mouths. How would they? They literally have no idea what being poor is. As a result, ideas about deserving show up in all the ways meant to help people in need. They take the form of hoops you have to jump through to get that help, and while they may be different hoops than, say, being required to recite the Lord’s Prayer before supper or having to sleep in a separate shelter than your life partner due to ideas about morality (or, for that matter, not being acceptable to a shelter at all if you’re gay), they do more to hinder and demoralize us poors than to give us a hand.

We’re currently in the process of seeking some assistance, and here are some of the hoops I’ve noticed.

The Childless Hoop

Virtually every form of public assistance I’ve looked at prefers, and in the case of being eligible for immediate aid requires, that there be minor children present in the house. Now I happen to think it’s great the government wants to feeds children despite some politicians’ best efforts to the contrary. And I don’t believe that people would elect to have children solely to get those cushy benefits, as I’m sure some do. However, as a childless poor woman I feel even more of a second-class citizen every time I fill out a form asking if there are minor children in the house and know my chances of getting help would be better if there were. (In fact, back in the dim and distant past, the first time I applied for assistance [unemployment], the case worker told me to my face I might as well give up trying since I didn’t have children. And this was before Clinton’s Welfare Reform, mind.) Moreover, as a childless woman who desperately wanted children but couldn’t have them, I feel slapped in the face every time I have to answer that same question. Not pleasant, or easy.

The Distance Hoop

The other day, my husband had to drive some forms over to the county social services extension in the next town, a distance of ten miles. When he got home, he told me, “I was watching the gas gauge the entire way, and I’m going to have to come up with some money to put in the tank by the end of the week or I won’t be able to get to work.”

Every time we have to turn in a piece of paperwork or attend an in-person interview, at least one of us has to travel those ten miles at minimum. If we can’t do what we need to do at the extension office and have to go all the way to the main social services building, that’s thirty miles. One way. There’s no public transportation in the rural area where we live. If we didn’t have a working vehicle, we’d have to borrow one or beg a ride, or we’d be stuck. It’s asking a bit much, I think, of poor people to require they have a car–and the gas for it–to be able to apply for assistance. And it plays directly into the next hoop we have to jump through, which is

The Time Hoop

Applying for assistance takes time. No matter what some people believe, you can’t just walk into an office and claim you need help, and walk away with a fat cheque. There are myriad forms to fill out, and interviews to attend, and more paperwork to file after the first lot has been processed. We’ve been working on this process for six weeks now, and we have no word whether we even qualify.

Government agencies don’t care about your time, and that’s dehumanizing. And it’s even worse in rural areas. Sure, some things can be done through the post, but the post isn’t reliable. Here the post has to go from Delta, where the main social services office is located, all the way to Grand Junction to be processed, and only then back to our small town. This can take days. Back last summer when my husband had his work accident and we were trying to see if we could get it covered on his insurance, we got a notification that we needed to file certain paperwork after the date it was due. Consequently, his whole claim was denied. More recently, we received notification of a phone interview the evening before it was to take place (at 8:30 the next morning). This doesn’t leave much time to make arrangements–in our case, with my husband’s job, in other cases, for childcare or anything else necessary to make sure you have a chunk of time available. And we were lucky; our interview could be conducted over the phone. If you have to go in, in our area that’s 30 miles to cover to get to the main office, then another chunk of time waiting–there’s always waiting–and then up to another hour for the interview itself. If you have to travel and you lack a car, you can easily blow an entire day getting to and from one interview. In that long ago time when I filed for unemployment, I had to ride a local bus from Ann Arbor to Ypsilanti several times. It’s a distance of ten miles; it took 45 minutes there and back, plus the time at the social services office every time. That didn’t leave much during the day for other things like, say, looking for other work.

The Proof Hoop

I’m convinced that the reason for all these hoops is that the social safety net–for what it’s worth–in the US isn’t designed benefit people at all. It’s designed to keep out those whom the system decides don’t qualify, for whatever seemingly arbitrary reason. And nowhere is this more evident than in the mountains of proof required to convince social service workers that you actually need and qualify for help (the accumulation of which takes time which you may not have, mind).

Take my disability claim. I have had a serious mental illness my entire life. Numerous doctors have treated me for it. Many of those have told me and those around me that I would never be able to work a full time job. (My parents were told “she’ll never be able to take care of herself” when I was eighteen.) Despite this, it took me until ten years ago to think that maybe I might qualify for disability, So I filled out the forms and was denied off the bat.

This is not unusual. Generally disability claims are denied the first time you apply, unless there’s reason to believe you won’t live another six months. If you appeal, you have a chance of your claim being granted, but you have to supply ample proof of your disability and, in many states (mine included), attend a court hearing.

I wasn’t up to the task, so I enlisted a lawyer who would take for his fee a portion of the award if my claim was granted. What I would do if it weren’t, I had no idea, but I was in bad shape so I went for it.

It took two years. The court demanded all my medical records for the ten years previous, as well as statements from all the doctors I had seen in that time and any I was seeing currently. In addition, I had to fill out another ream of paperwork: all about my treatment, and the meds I was taking, and what steps I had taken not to be disabled. I was deep in a major depressive episode at that time, and I could barely face doing the work. My lawyer called me up and yelled at me for not reviewing my files.

Well, anyway. I guess I presented as crazy enough at my hearing because my claim was granted. But even though I have a lifelong illness, the powers that be see fit to review my case every three to five years to see if I still have Bipolar Disorder. This puts me in a Catch-22, because if I improve too much I’ll lose the disability medical insurance that pays for the medications that helped me improve in the first place, and I’ll be right back where I started.

As a contrast, at the same time as I was going through all this rigmarole, a friend in England with troubles and a depressive episode of her own needed a reprieve from work. She saw her primary care doctor and told him what was going on. He wrote her a slip of paper “signing her off work” for six months, which she took to the nearest benefits office and that was that. Of course, things being what they are in the UK right now, this system may be on the way out.

More recently, as we’ve filed for assistance, we’ve been asked for proof of disability, proof of work, proof of wages earned, proof we no longer had a bank account that’s been closed for ten years, proof that an insurance policy was canceled, proof of debt…and the list goes on and on. All of which serves to solidify my belief that the social service system in the US exists in mortal fear of dispensing benefits to someone who doesn’t “deserve” them.

The poor would be better served, and bureaucracy much reduced, with less judgment and less concern about who deserves what and more compassion and trust. But until more politicians take their heads out of their asses and stop listening only to those with clout and money, attitudes of judgment will continue to infect the very systems claiming to provide relief.

 

Advertisements

The Math of Poverty

Getting some pushback on yesterday’s blog, I see. Apparently poor people haven’t earned the right to be judgmental, or to be angry. Sometimes I think there are only two ways to be an acceptable poor person in the US. The first is the “Bob Cratchit” model: Show up to work every day at your perennially underpaid clerical job, wearing the threadbare yet neat suit you (or your partner) have painstakingly hand-tailored by the light of your single candle, live on your bowl of bean broth a day and never ask for more, and generally show stoicism about your lot. The second is the “dirty beggar” model: wear sackcloth and ashes and hang out on street corners (preferably with your entire family and a small dog), shaking empty coffee cans and hitting up passersby for spare change. This second, while not respectable, is certainly acceptable in that it gives your “betters” someone to look down on and complain about in various forms of media. Falling outside either of those models confuses and alarms people. And when people are confused and alarmed, they react in unpleasant ways.

Which brings me to today’s post. I found something educational in the veiled vitriol of one comment (interesting use of the quotation marks around the word “husband,” by the way; did you mean to question the existence of such a person? or do you simply doubt that we’re married? I decline to upload a copy of our certificate for your inspection.). It went like this:

“With the $10 you spend on Netflix, you could have had THREE pairs of glasses and not waited three years!”

Honestly, at first I had no idea what this meant. $10 is obviously not $101, which was the cost of my glasses. And it definitely would not have covered three pairs of glasses. So I had to rewrite this portion of the comment in my head. It came out like this:

“If you had saved that $10 a month instead of spending it on Netflix, you could have bought three pairs of glasses in three years.”

Ah-ha! That makes better sense–to a point. And this is where the educational part comes in. You see, poverty math is not like money math. Money math is straightforward: X amount x Y months over Z years = AMOUNT. Poverty math is more existential, and there are far more variables. So what looks like a simple equation ($10 saved on Netflix X 12 Months/year X 3 years = $360 = Enough for three pairs of glasses) becomes a complex equation including time and circumstances and all kinds of other things a poor person has no control over. I’ll spell it out:

Let’s say I decide that I’m going to do without Netflix and put that money in a jar every month, so at the end of three years I have enough for my three pairs of glasses. Let’s also say that at this point in time this is the only “extraneous” expense I have so this is the only savings I can make, and let’s grant that I am making enough to cover my monthly housing, food, and utilities.

After six months I have $60 in my “glasses fund” jar. And then something happens. It doesn’t matter what happens. Stuff always happens. Maybe I blow a tire on my car and it has to be replaced. That’s minor; a new tire costs about $60, less if you get one that’s patched. Do I dip into my glasses fund? Of course I do, because I have to have the car to get to work. It puts me back at zero on my glasses fund. This shows how savings are a function of circumstance. So now our equation can be expressed as:

[12(Savings) / (Circumstance)] X 3 = Glasses

You can make up the loss in a relatively short time. But that was a small problem. Let’s say there’s a big one. Let’s say your car blows an alternator. That’s around $300–it’s been a while since we had to have an alternator replaced. It wipes out your monthly food budget. Now you have $60 and no food, and your kids are hungry. Do you hold onto that $60? It’ll buy a lot of macaroni and cheese. Of course your future glasses will take back seat to that. Your savings have actually gone into a negative amount here, because it’s going to take you a while to make up your deficit. Remember, you have no credit cards, only cash in hand.

Poverty Math is an exercise in relativity, and the rule is always Current Circumstance > Future Circumstance.

People come up with all kinds of arguments against this reality of hand-to-mouth living. There’s always the person who will say, “But do you really need the car? Can’t you take public transportation or get a ride to work?” And I’m not going to answer that question, in the first place because there will always be something more important than the future that comes up, and in the second because nothing will ever satisfy these people. No matter what lengths of austerity poor people go to, those who think they know better will always claim they should do more and sacrifice more.

I don’t know if Poverty Math qualifies as a science. Perhaps it’s more of a philosophy. The time and relativity aspects insist that one exist in a kind of perpetual NOW, where worries about both the past and the future become irrelevant. Perhaps this is why so many spiritual systems recommend giving up material goods and living a life of poverty. I don’t see the bright side, myself. The problem of an eternal now is that you lose the ability to believe in the future at all.

If that’s part of enlightenment, I’d rather have the money.

[With regards to Occupy Math, who I hope will find this post humorous.]

Dear Wealthy Person…

Wait: I’ve started off wrong, haven’t I? Because you don’t think you’re wealthy, not at all. You probably think you’re comfortably middle class, though your six-figure income puts you in the top 2% of earners in the US, though your yearly income is more than my husband and I expect to see in ten. I see this as part of the disconnect the wealthy have from those on the bottom of the income scale; after all, studies have shown wealth decreases empathy.

So I shouldn’t be surprised that you’ve posted another meme about how poverty is due to mismanagement of funds and not a lack of funds, and how you’re not about to “throw money at” the poor because it won’t solve the problem. And I’m not. It still makes me mad, though. I don’t have any reason to suppose you posted this meme in response to my sharing my GoFundMe campaign begging people to help us with this week’s $500 in bills that have to be paid RIGHT NOW, yet I do suppose it. Every time I see a meme like the one you shared, it feels personal to me. Both judgment and a slap in the face from someone who doesn’t know, and likely will never know, what it’s like to live in abject poverty. The kind of poverty where every day is another choice of what we can do without, another decision on what to put off and what absolutely has to be paid for.

I’m thinking you believe you could make those decisions better and more easily than we do. Trim the fat! Don’t spend anything extra and then you’ll have money to put away! I’m imagining your voice telling us we don’t need expensive broadband Internet (after the installation fee, cheaper than what we had before, so the alternative is no Internet, mind). We don’t need mobile phones, do we? Certainly not two of them, with two separate accounts! ($75 a month for the both of them, in an area where some places still don’t have landline access. Oh, right–we DO have a landline for emergencies; it’s $25 a month. Sometimes the fiber optic lines get cut.) They just aren’t necessary–except my husband needs to be available to take calls anywhere and anytime a job might come up. Except I have a mental illness and my phone can be my lifeline in a way the landline isn’t, in a way I can’t explain, but of course that doesn’t matter. I didn’t need to spend money on a nice steak yesterday ($7 on a really good sale) because ramen is good enough for every meal, even when I have a literal physical condition that requires and infusion of high quality food every so often. Let’s see, if I eliminate all that “fat” from my budget (unnecessary Internet, unnecessary phone plans but the phones are already paid for, the food doesn’t count because one must have some kind of food), then I’ll have saved a whole $125–not even enough to pay one of the outstanding medical bills we have on hold because my disability (did I mention I’m disabled?) medical only covers 80% and the husband doesn’t have any insurance at all. So we’re stuck with the pile-up of bills incurred when he almost cut off his thumb last fall. Now I’m down to choosing which of the utilities I can sacrifice and whether or not that mortgage payment is really necessary, and do I really have to see my therapist and my medication manager in this next week? That’s another $75, which would be $50 except the last time I saw my therapist (almost two months ago), the Mental Health Center was good enough to defer my fee. But I guess it’s not really important whether or not I’m suicidal.

You may notice that I can tell you the exact amount of every bill and how much we’ve spent in the last few days ($34.81 for a small sack of groceries because the last $10 has to go in the gas tank), and I didn’t even have to look that shit up. So I object to the claim that financial difficulties we face are the result of “poor management.” The truth is, we don’t have anything to manage. When you’re faced with a choice of being shot or being hung, all decisions are trivial.

I know very little about the way you live, other than that you have more than I do. I can admit that. Why do you assume you understand the causes of poverty, or how poor people live?

In Googling (there’s that unnecessary Internet service again) to find a citation for another statement I want to make, I found a lot of articles from people who seem to think as you do, right down to using the same words: “Throwing money at” the poor won’t cure poverty, for whatever the reason of choice happens to be. Can I just take a minute to tell you how offensive that wording is? Every time I see it in relation to someone or something needing funding to solve a problem, my sight turns red. I get an image of someone throwing meat at a starving dog to distract it, then running away. Running away without LOOKING and SEEING whether that dog has been mistreated, whether it’s chained, whether it has sufficient water and shelter and all the things a dog should have. To me, it says a lot more about the person who uses the phrase than it does about the people at whom it’s directed. It says you want an easy way out. It says you don’t want to think. It says you want to do the barest minimum thing possible to assuage your guilt, and maybe to keep you safe where that dog can’t get you. So you talk about “throwing money,” and then you dismiss the very concept, because you’ve made your pronouncement that it won’t work. And you know what, in some ways you’re right. “Throwing money” won’t “solve” poverty on a wide basis. Solving the problem would mean taking a good, hard look at the problems that cause it, at the limitations of Capitalism and Calvinism, and working hard to combat them. But that’s too hard. So you declare yourself without responsibility to your fellow human beings, who have had the misfortune not to start out with as much as you have, of who have slipped into the hole that waits for everyone who doesn’t toe the line. To those with mental or physical disabilities, or just with the wrong temperament, to do what one has to do to succeed within the system’s limitations. You got yours, they need to get theirs. World without end, Amen.

I’ll tell you what: “Throwing money at” poverty might not cure it. But it certainly helps to be able to get over the next hurdle and breathe a bit before you have to face the next one.

My husband owns two pairs of pants, did you know that? One for work and one for not-work, with a not-too-badly worn pair of jeans for those dirty jobs around the house. Is that too much for him to have, do you think? Should we sell one? Maybe with the money from it we could start an investment portfolio. I’m a bit luckier: a friend regularly gives me an Amazon gift certificate for my birthday, so I can get some clothes, a pair of boots. My good winter boots are 20 years old. My husband hasn’t had a new pair of work boots in at least 15 years, maybe more. If we can’t make them last, what do we do? There’s no money for new ones.

THERE’S NEVER ANY MONEY FOR NEW ONES.

Last time someone made a major contribution to my fundraiser, I bought new glasses ($101). I felt guilty for doing it, even though I’ve been needing new glasses for about three years now. I felt guilty about wanting to be able to see. But maybe that’s another thing I should have done without.

You know what else we don’t have that’s considered normal? A television or cable service. Entertainment in this house is hauling the laptop into the bedroom and hoping the screen lasts through another hour of streaming something on Netflix. Oh–should I have added Netflix to the list of things we can do without? That’s a whole ‘nother $10 per month! I should celebrate.

I know you have a job, wealthy person. I’m almost certain you don’t need it, because your partner earns the bulk of your income. It’s a hobby for you. Even that hobby would sustain us comfortably–more than comfortably. We’d be well off if we had the wages you earned from your hobby. Currently the husband is working part time at half his usual wage because that’s the only work there is. And yes, this much is true: We chose to live where we do, in an area that doesn’t offer a huge amount of opportunity. And we did all right until the Recession hit. We were willing, and are still willing, to make certain sacrifices. We saw a way toward a better future. That’s why husband went back to college right before the Recession. But you know what? That college degree has done bupkis for us. No one wants teachers here. No one wants to “throw money at” education. Good gods, what’s going to happen in a rural area with no alternatives but public school under our current president, I can’t bear to think!

You might advise us to up and move if we can’t make it where we are. I want to ask you, who’s going to pay for us to do that? Is someone going to guarantee work and moving expenses? Is someone going to find us a new place to live–far, I might add, from family members who are getting older, and who need us, and who don’t want to move? The house we live in wouldn’t bring much. We’re fortunate in that my dad bought if for us as a wedding present, but we’ve had to mortgage it up to the eyeballs. And you know, poverty has affected our house, too. I think we’d have to put about $10,000 into it before we could sell it. Where’s that going to come from?

I’m winding down from the intense rage I felt at the beginning of this post, but I want to add one last thing: You know what they worst thing is about being poor? Besides the moralizing, judgmental people who think they know what your life is like, I mean. The worst thing is, you get to this state where it seems like all you’ve known and all you’ll ever know, so there’s no use in dreaming of anything different. I was noticing this just this morning: We used to say things like, “Maybe next year we’ll get a chance to go to Denver Comic Con,” or “I really want to go to the Ren Faire in Larkspur; maybe next summer.” But we don’t say those things anymore. Because we know it’s not going to change. There’s not going to be any Comic Con this year, or the next year, or the one after that, so why bother even thinking of it? And maybe you’ll say that’s part of our problem: that we don’t make plans and then stick to them, so we never get out. But I’ll answer you this: You can’t make plans and stick to them if you don’t have the wherewithal and you have no way to get it. No matter what plan you make, it has to be able to shift in the face of necessity. And necessity boils down to food and shelter, with warmth and light and water coming not far behind. When I see your self-righteous meme, I imagine you think we’re not keeping track of these things. The truth is, we juggle them every single day. It doesn’t stop the unexpected from happening: The blown tire that has to be replaced, or else husband can’t get to work; the sickness that makes it impossible to work; the family emergency; any other thing that a wealthy person like you has a cushion for and we don’t.

The truth is, giving poor people money does work. You just don’t want to believe it does, because it relieves you of responsibility to help. In my book, that makes you a taker every bit as much as you think I am. So I guess we’re even.

 

Two Weeks Later

Two weeks and two days ago, I woke up, along with the rest of the United States, knowing that Donald Trump had, contrary to all polls and predictions, and an increasing amount of the popular vote, won the election. This is what I’ve witnessed, read, and experienced since then, in no particular order and presented as much as possible without judgment (though there are definitely items on the list I find personally repugnant).

  • People texting or messaging me, to whom I’ve rarely spoken before, to express their dismay and terror. People who, knowing 70% of the county in which we live voted Trump, wonder which of our neighbors did, and whether it’s safe to trust them.
  • Within a day, 200 reports of hate crimes against People of Color, Muslims, and LGBTQ+ folks, even in areas of our state that swing fairly liberal. Within two days, double that number. In almost all cases, the perpetrator referenced Trump’s win as the force empowering them.
  • The report that 53% of white women, most of them middle class and above, voted for Trump. Numerous think pieces attributing this development to women “placing race above gender in importance.”
  • A friend experiencing so much harassment after the election that before two days had passed she and her family decided to move to another state.
  • Intense arguments between the conservative half of my extended family and the liberal half.
  • People of color feeling (justifiably) betrayed and saying they will “never trust a white person again.”
  • Think pieces blaming white women in particular for being too complacent.
  • A rally of the “alt-right,” a white supremacist group, at a hotel near the White House, complete with Nazi salutes and slogans in the original German.
  • Think pieces blaming the election results on third party voters.
  • Think pieces blaming the election results on “identity politics,” and calling on the Left to empathize more with white working class voters.
  • Arguments about what kind of show of solidarity is “right” or “enough” and what kind of action allies need to take, and who gets to define all those things.
  • A definite absence of acknowledgment from the able community of how much danger Trump’s election and Republican control of (potentially) all three branches of government poses to people with disabilities.
  • Lots of people with activated trauma of various kinds lashing out at each other. Calls for solidarity being met with recriminations.
  • Large peaceful protests of the election results in nearly every major city in the country.
  • A friend frightened and in tears because the protest in her city turned violent.
  • Conservative claims that all the protests are “riots.”
  • People conflicted between maintaining the outrage that motivates them and the urge, as well as politicians’ encouragement, to treat this election as “business as usual.”
  • A huge popular movement to audit the vote in three states where the tallies were incredibly close. Jill Stein’s unprecedented campaign to do just that, which raised $2.5 million in under two days.
  • An acquaintance whose cause celèbre is Universal Basic Income insisting it’s not just “white working class;” it’s working class in general.
  • Lots of advice from various quarters on how to be as safe as possible under an authoritarian regime.

The election stressed me out more than any before, but the two weeks since have aged me in a way I never imagined possible. I’ve always looked and acted (by societal standards) younger than my age, and I haven’t felt much different in my body from the person I was twenty years ago. But lately I’ve wondered if the various passing aches I’ve attributed to other causes aren’t really a sign of my age. If the lapses in memory, which are more frequent, are a sign of encroaching senility. If I’m just as fat old woman sitting on a couch, cursing the kids and dreaming of better times. I have become my father, though still stronger than he was, I think. My husband says if my father were still around, this election would have killed him. He’s right, too.

Except for checking in on particular groups, I’ve stayed off social media. Especially Twitter, which can be a pit of adders if you don’t tread carefully. People of all persuasions are willing to speak in harsher terms there than they might elsewhere, I’ve noticed. Snark is rampant. So are claims of tone policing and “marginalized people can’t be bullies,” which is patently untrue. Anyone can be a bully. People who carry grave hurt are often particularly good ones.

I cried for a week after the election, and I’ve cried many days since. So have most of the women I know. (Yesterday my husband said he wanted to curl up in a fetal position and cry. I told him that was okay, he should cry if he needed to. He said he couldn’t remember how.) On social media, my tears of often dismissed, either indirectly or when the speaker refers to a group of which I’m part in general terms: “The fact that this outcome shocks you proves how privileged you are. My marginalized group knew all along how bad it is; you just didn’t listen.”

It’s not shock that moves me to tears. I have my own marginalizations: sexual assault survivor, disabled, mentally ill, unemployed, financially insecure. Living in a rural, white area where the main two employers closed their doors in the last year and the message boards are full of screeds about “Obummer’s war on coal,” and the persecution of Christians, and the liberal elites with their need to control everything, I never took it for granted Hillary Clinton would sweep to victory. To me the election boiled down to an obvious truth: If Hillary Clinton won, though she might not be perfect, we’d be okay for the next four years. To quote Rebecca Solnit, “Voting is a chess move, not a valentine.” If Donald Trump won we definitely would NOT be okay. None of us. Not women, white or otherwise. Not my family and friends of color. Not the disabled, or the LGBTQ+ community. Not even the people who voted for him. And yes, I ran across more than a handful who voted him because they’d rather the world burn to ash than try to fix it. I always had to wonder if these people saw themselves burn, or if they imagined watching from the top of the heap, unaffected by what they’d put into motion. I suspect the latter. A certain kind of white male never bears the brunt of what they put into motion. It’s the rest of us who do.

The high potential for failure is what stressed me out so much in the weeks and days before the election. It’s what caused me to dip into my husband’s Valium prescription at times and turn to the Scotch bottle at others. It’s why I cracked dark jokes about the Apocalypse, which I was terrified would come to pass. And when they did come to pass, it wasn’t shock that I felt. It was despair. I had hoped so hard that we were better than this. Smarter than this. More compassionate. I had prayed to whatever gods happened to be around that the crowds at the Trump rallies represented a small minority. The election results dashed that hope to pieces, and I take little comfort in Hillary Clinton winning the popular vote. A 51%-49% split is far too narrow to suit me. With such deep differences, how will we ever find a place to meet?

My conservative brother-in-law asked my husband the same question the other day. He voted for Trump. He said it was the hardest decision he’s ever had to make, but he knew only two candidates stood a chance of winning and, in the end, Hillary Clinton represented “everything he was against.” He wondered why people who disagree with liberals as to policy are now being characterized as racists and bigots. If I still spoke to him (I blocked him on social media during the 2012 election cycle), I’d like to scream at him that policy has nothing to do with it; that Donald Trump never made any coherent statement of policy at all, but riled his supporters up against immigrants and people of color and demonized his main rival. How is this policy? But Clinton reached out to marginalized people and supported women’s bodily autonomy. That, my brother-in-law says, was his main sticking point; he’s against abortion in any form. He has three daughters. I keep wondering, if one of them were expecting a much wanted child and found out in the twenty-sixth week of pregnancy that her child wouldn’t live, would probably not survive gestation, wouldn’t he want her to have a choice of what to do? Or would he doom her to walk around for sixteen weeks, a whole four months, knowing her child was dead inside her? Having lost both my children early, I can say for a certainty such a situation would have driven me out of my mind with grief.

Two of his daughters, by the way, are married to Black men and have mixed race sons. And he voted for a man who wants to institute racial profiling and stop and frisk laws. How could he do that? How would he feel if it were one of his sons-in-law, one of his grandsons, who got pulled over by a cop for “fitting the profile,” and shot for no cause? Is he so secure in the notion that bad things don’t happen to good people? If the cop claimed later he “felt threatened,” would my brother-in-law think that was enough?

A lot of our differences are of religious origin; BIL is an Evangelical Christian and we are farthest thing from it. 83% of white Evangelicals voted for Trump. I cannot fathom why, and neither can most other Christians of my acquaintance, Evangelicals among them. How can people who claim to honor Jesus Christ choose a man who lies, who preaches hatred, who sows division, who admits to being a serial rapist? It seems to boil down to the belief that Christians are being persecuted under the current administration. Even though I know the reasoning, it boggles my mind. It seems obvious to me that if you want to teach your children that the Earth was literally created in seven days and is only 4,000 years old, that dinosaurs were on the ark with Noah and co-existed with humankind, you are free to do that. But not on the public dime because it’s faith, not science. It’s clear to me that if you run a business that’s open to the public, you are required by law to serve all the public whether or not your religion agrees with the way they live their lives. Nowhere in the Bible does it say “Thou shalt not bake wedding cakes for, or rent your venue to, or arrange flowers for, or photograph gay people, nay, not at their weddings or celebrations, or in any other place, for such is an abomination in the eyes of the Lord.” Kosher delis aren’t allowed to refuse service to goyim because we don’t wear yarmulkes. If you don’t believe in abortion, don’t get one. If you don’t believe in birth control, don’t use it. Evangelicals seem unable to see that “freedom of religion” does not mean “freedom to force your religious views on others,” and when you point it out they cry persecution. It’s baffling to me, as much as the claims that “America was founded as a Christian nation” when one can cite document after document disproving such a statement, and Freedom of Religion was written into our Constitution. And it really doesn’t matter that at the time of the founding, Christianity of one form or another was the religion of most of the West, and it was probably inconceivable to many that other religions would become so prominent. At the time of the founding, only white, male land owners were allowed to vote or hold citizenship. Do we want to return to those strictures as well? At times, I think some do. Or they conveniently forget the parts of the original Constitution that don’t fit into their world view.

But to return to the original question: With a population roughly divided in half as to the way to proceed, and those halves near as makes no difference to polar opposites in stance, how do we ever find a meeting place? Some say it’s incumbent on the Left to reach out to and persuade those on the Right, which has quite a lot of the Left justifiably angry. It always seems to fall to the Left to be reasonable, though I know those on the Right would disagree with me there. Compromising with mule-headed Conservatives has dragged the Left more and more toward the center, until most of our politicians are on a level with Nixon and Reagan. Some would disagree with that, too (my BIL says the Republican party has swayed too far Left for him; what he means by this, I have no idea whatsoever), but you can look up and compare the policies. How loud does the Left have yell that we’re all humans and all deserve the same civil rights before the Right agrees? I’m sure many individuals agree–even my BIL claims to be against mass deportation and instituting a Muslim registry. There seems, however, to be a cosmic disconnect between the individuals and the philosophy, between claiming an idea and putting it into practice.

Many classify the divide as between Urban and Rural, and if you look at a county-by-county map of votes cast, this seems to bear out. It reminds me of Robert Silverberg’s Hugo-nominated book, The World Inside. I read it long ago, but essentially America’s population is divided between City dwellers who lead rather decadent lives in skyscrapers, and the farmland communities in between, where the inhabitants practice rather bizarre rituals. I hate to think this prophetic, although I, along with many of my circle, don’t see a way we can bring such disparate views of the country into a unified whole. We’ve begun to voice the once-unthinkable: Maybe this country doesn’t work. Maybe it’s time to acknowledge there need to be two, or many. I don’t see how this could be possible. Given the lack of clear geographic lines along which to form borders any division would force people out of their homes. And Urban and Rural areas have a symbiotic relationship; one can’t survive without the goods and services of the other. Negotiating trade agreements would be a nightmare.

Living in a Rural area, I can sympathize with some of the sentiment. We don’t have many of the advantages of an Urban environment. Jobs are low-paying and hard to come by even if you have a good education, which many lack. If the main employer of blue-collar labor shuts down, everyone suffers. I don’t blame scared people for wishing for a return to the “good old days;” however, I know that those good old days, when a person could make a good living and support a family with a high school education, were only attainable for a brief period in the middle of the twentieth century. I think when people rally to the cry of “Make America Great Again,” that’s what they want: The dream they’ve been denied. Giving up on a dream is hard. It’s easier to cast blame on one group or another and reach for simple (though not easy) solutions than it is to change an ingrained system of thought. Though Horatio Alger “rags to riches” stories are part of the American mythos, most of the populace are not innovators or entrepreneurs. They’re more secure in the assurance that everyone knows their place. Now everything is topsy-turvy, and it frightens them.

A little while ago, my husband came back from a gig with his Blues band and told me about a conversation he’d had with his buddy, the guitarist. His friend had mentioned reading of a college professor who said “Any white person living in this society is racist,” and how it had put him off. My husband took the opportunity to clarify, explaining how when a certain group of people has power, they tend to construct their society around themselves, paying attention only to the things that matter to them, which pushes people who don’t fit the model further and further to the margins. So, in this case, whether or not a white person actively holds racist views, they benefit from a racist society in ways people of other races don’t. And that, my husband went on, is what’s meant by privilege. He managed to get intersectionality in there, too. His friend understood; in fact, he said it was the first time any of that stuff made sense.

We need more conversations like that and fewer recriminations. But as long as people hold fear and pain close to their hearts and come to the table with minds unwilling to stretch and ears unwilling to hear, I doubt they’ll ever take place.

 

But Why-y-y-y??

I’m writing this post in mid-October. It’s more suited to late January or early February, for reasons that will become plain. I may hold off and publish it then. More likely, I’ll write it and publish it immediately. That’s my usual MO: I get an idea, spit it out, and release it into the world. Actually, I’m not so sure any of us will be here come February, and I want to go on record with this moment of clarity over a question I’ve wrestled with a long time.

When my husband was still teaching (a career he yet hopes to return to some day), he would sometimes tell his teenage male students, “There are three dates you have to remember when you’re in a relationship: Your girlfriend’s birthday, your anniversary, and Valentine’s Day.” I’m going to leave aside, for the moment, the way this humorously-intentioned advice reinforces the stereotype of men as lovable bumblers incapable of remembering significant details and focus on the teenage males’ inevitable response:

“But why-y-y-y-y?? What makes Valentine’s day so important? It’s just a day!! Why do I have to do special things that day? I mean, she knows I care about her. If I didn’t, I wouldn’t be with her!”

My husband has also asked me this question over the years. With us, it’s delved into the social and political implications of a manufactured holiday: Why do women expect men to make such a big deal out of it, even men they’ve been with for years? Don’t we know it’s a marketing ploy? If you want those things, aren’t you falling into the trap of perpetuating patriarchal gender norms? How can you be a feminist and want a romantic Valentine’s Day? And for years, I have been at a loss to answer. I’ve struggled with my wish to be acknowledged in what I believe to be a way that reinforces a lot of societal ills and stereotypes about gender. I’ve been deathly afraid that my desire to be shown special attention, my desire for a celebration of love, has marked me as a Bad Feminist.

Right now, though, all those questions boil down to the same adolescent protest: “But why-y-y-y-y?” And I have an answer:

Because you don’t get to think that the mere fact of your bodily presence is enough because you’re a man. Because women of all ages consistently and constantly go out of their way to make things nice for their partners, whether this looks like listening to them talk about subjects in which they have little interest, or debating about what dress they’re going to wear on a special occasion, or doing more than their share of the work of keeping the environment livable. Because women are required to do more than just show up, and suffer when they stop putting in the extra mile.

Lately–and I mean in the last year or so–I’ve seen more and more women talk about how they do nice things for themselves, not to benefit the male gaze. Usually this comes in conversations about catcalling and other unwanted male attention: Some dude bro says, “If you didn’t want to be noticed, you shouldn’t have worn that pretty dress,” and a woman responds with “I dress for myself, not for you.” My gods, you’d think the men had been robbed. They cannot stand it when women talk about doing things for themselves rather than the men in the world. It’s even worse if you reject cultural beauty standards altogether. How dare you make yourself unattractive? You simply can’t win.

But men still think all they have to do is show up. “She knows I love her. If I didn’t, I wouldn’t be here.”

News flash, guys: You are not that special.

I get that the rituals of a different time are confusing and maybe seem irrelevant in a changing world. In my parents’ time, in my in-laws’ time, relationships between middle class cis het couples followed a (relatively) clear course: Courtship, which was mainly led by the man, I believe; proposal, marriage, a couple kids. The man as the breadwinner, the woman as the caregiver. Probably then the ritual of giving your wife a box of chocolates and a dozen roses on Valentine’s Day–or going out to dinner as a couple, or whatever–served as a mark of appreciation and a reaffirmation of the connubial bond. But the late 60s began the process of throwing off the chains of the 50s. My gods, women have careers now. They can ask men out! They have sex without being married and still demand respect as human beings! Geez, isn’t that enough? WHY DO YOU STILL WANT THAT OUTDATED BOX OF CHOCOLATES?

Despite the loud and persistent denial of certain male-identifying people, the women’s movement has never been about just women. Challenging patriarchal norms has benefited men, too. You don’t have to wear the stiff suits and ties all the time, just as we don’t have to wear skirts and heels. (Unfortunately gender-based dress codes have not yet accepted men in skirts.) You can grow long hair, get your ears pierced. You don’t have to be the sole support of a family. You can be a stay-at-home dad if that suits you and your partner. You don’t have to repress your emotions. You can not want to have sex all the time. You do not have to subscribe to the toxic models of masculinity that have made men’s lives so hard.

But, and there’s always a but, you do have to stop being so full of yourselves. You have to show up. You have to participate. You do not get to park your ass in the easy chair and say that’s enough. “Of course I love you, honey! I married you didn’t I?” doesn’t cut it. Don’t pass it off on being unable to articulate your feelings. Exhibit some learning behavior.

Women are fucking tired. And part of the reason we’re tired is that so many men have taken women’s progress and the changes we’ve initiated in society to mean they can be lazy. Yes, you can do something other than go “into business” and still be considered a contributing member of society rather than a deviant (provided you have enough of certain types of privilege, which I’m not even going into here). You do not have to strive toward the house in the suburbs and the 2.5 beautiful children. But there are consequences to whatever you choose, and one of the consequences of wanting to be in a relationship is doing the work. Part of the work is active participation in whatever rituals you and your partner find important. If a romantic Valentine’s day isn’t important to either of you, fine; rituals change. You need at least to discuss it, and it wouldn’t hurt if you were the one to broach the subject. Far too often, women are left with the responsibility of bringing up topics that men would rather ignore.

And please, don’t with the manly-man “emotions are beyond me” shit. I already told you, we’ve worked hard to begin to build a world where men don’t have to suffer such constraints, and we’re sick to death of the “Women Are from Venus/Men Are from Mars” crap. For too long women, and LGBTQ+ people, and People of Color, have borne the burden of speaking the language of (mostly) white, cis, het men and moving through a world geared towards white, cis, het men’s wishes. It’s about damn time white, cis, het men got in the game.

This post is probably making a few people reading it extremely uncomfortable. Good.

In the end, the answer to the question “But why-y-y-y?” is very simple: Because your partner wants it from you. That should be more than enough. We are not things for your amusement, like your X-Box or your flat screen TV. We are humans, and it is perfectly fine and normal for us to ask for what we want. And if you have a problem with that, it’s on you, not on us.

Mansplaining MMCCLIXXIVV: The Irony

So, the other night, I posted this Tumblr meme to my Facebook page:

wp-1472850999836.jpg

I both like and dislike it. I like it because it uses superheroes many, if not most, people are familiar with as examples of struggle and perseverance. This is something Geek-minded folks, who may not find more common inspirational memes accessible, can relate to. I dislike it because I dislike inspirational memes in general. At their best, they reduce significant struggles to simplistic terms. At their worst, they become “inspiration porn,” a nasty internet phenomenon that hurts all people with disabilities, whether physical or mental. Bearing this in mind, when I shared the meme, I said I couldn’t decide whether I liked it or whether it made me want to shove my fist through a wall. Soon after posting, I went to bed.

When I checked Facebook the next day, a couple of my friends (with one exception all women with a variety of chronic illnesses) had commented. Nothing major, but the general consensus was “Fist through wall.” Several mentioned that the characters were fictional (IMO, not a stumbling block to taking inspiration from them), or that at least two are fabulously wealthy–a reality which, if it doesn’t solve problems, does, in fact, make them infinitely easier to bear. One friend noted that the list doesn’t include any woman superheroes, which made her think that it was geared toward “TEH MENZ.”

Oh, my. Haven’t we learned by now the danger of pointing our sexism and misogyny in Geek culture? Apparently not. Not long after my friend posted this last comment, this happened:

wp-1472850871841.jpg

A male friend came onto the scene. I think it’s relevant to point out that he isn’t a close friend; he’s someone I picked up from one game or another and kept after I stopped playing because I genuinely like him. But I don’t know him beyond Facebook, and he doesn’t know me. On the other hand, I’ve been extremely close to the women involved for years.

So this male friend starts off with how he thinks people on the Internet just take things “way too seriously” sometimes, and the meme was meant to be a positive message against suicide, and that’s all. And then he goes on about every character mentioned, and how the creator probably picked ones that resonated with him, and how comic book characters have always been sources of inspiration and on and on AND ON FOR ALMOST 1000 WORDS.

One of the original woman commenters, who wrote her B.A. thesis on censorship in comic books, replied with a refutation of some of the things the man said and pointed out that the meme addresses movie versions of the characters rather than the comic book versions, which made his examples inapplicable. He replied by saying she was still “missing the point” in that we were “nitpicking whether these heroes were good enough to convey the message.” And on for another 1000 words or so, describing various iterations of the characters in Golden and Silver Age comics.

That’s where I stepped in and said enough. I told him IMO he was the one missing the point, which was that no one was trying to nitpick whether the heroes were “good enough” to convey a positive message, but that we dislike inspirational memes in general, that all of us have various chronic illnesses which are more than a matter of “just suck it up and keep fighting,” and that he took the entire conversation out of context. Plus, where the heck did he get that it’s an anti-suicide meme, because I don’t see that anywhere. I actually may not have stated things as clearly as that. Yesterday the whole incident had me so livid I could hardly bear to read the thread; today as I write this and look at it, it all seems way less loaded. In retrospect, I probably should have mentioned that I have an “Always Keep Fighting” sweatshirt which I love to death (Thank you, Jared Padelecki). Another woman friend got into the fray, mentioning that the meme almost offended her because how the Hell was her experience supposed to be comparable with a superhero’s?

Massive side-eye for this entire incident.
Massive side-eye for this entire incident.

Dude comes back with ANOTHER lengthy, point-by-point essay full of this, that, and the other, by the end of which he’d kind of admitted that he flew off the handle because he’s seen a lot of nastiness around this particular meme, and said he considered it anti-suicide because he got it from a suicide prevention page, and even managed to apologize in words. Kudos to him. But he still thought my one friend was missing the point.

Anyway, that really should have been the end of it, but later my feed barfs up a lengthy status update from him. This guy’s status updates are rarely shorter than 1000 words, and I mostly enjoy them, especially when he takes down inaccurate religious memes. He and my dad would have loved each other. Well, this one started with how he doesn’t generally agree with the Right about political correctness ruining everything, but you can be overly critical of innocuous stuff, and THERE’S THIS ANTI-SUICIDE MEME…. etc, and “more than one person who shared it even stated that they didn’t know if they loved it or hated it.” *clutches pearls*

Okay, enough. I restrained myself all night and most of today. Done now.

evil willow

Dude, first off, do you really not understand the concept of irony, or can you just not apply it to yourself? You come into a thread where people are having a relatively light-hearted discussion about their problems with a meme and proceed to lecture them AT LENGTH about “taking innocuous things too seriously,” to the point where it took me telling you to back the fuck off to get you to disengage, and then you complain about it to the public? Who’s taking things too seriously now?

In the second place, I have no idea if you’ve ever experienced suicidal ideation, but I doubt it, because if you had, you’d know it’s FAR from innocuous. It’s a fucking killer. People lose the fight every single day. I’ve attempted suicide more than once, which is why I have a fucking semicolon tattooed on my wrist–NOT because I love proper punctuation, although I do. So have several of my dear friends, and let me tell you, when you get to that point it takes more than a shitty meme about metahumans to motivate you to keep breathing. Fuck you for dismissing the pain of that. And fuck you twice for taking issue with people who have to find reasons to go on living every day pointing out that your “innocuous” meme is problematic. In case you hadn’t heard, you can like things and STILL critique problematic elements in them.

In your extended status of yesterday evening, you cite a problem in the LGBT+ community of safe spaces designed for that community (the gay male community in particular) being welcoming to others not of that community (straight women in particular), who then complained that the safe space wasn’t designed for them and, in effect, tore it down while while being unwelcoming to those who had sheltered them when they built their own safe spaces. Back to irony, you did the exact same thing on my post: You came into a space that was not yours and insisted it play by your rules. In addition, you took exception to people who have actually attempted suicide not loving your “positive message” against it. I thought you were better than that, honestly. If a marginalized group has issues with a piece of media purporting to address that group, then you need to shut up and listen instead of getting all butthurt when people in the group say “THIS DOESN’T WORK.”

But you know what? I think it boils down to sexism. I think you saw some women discussing something they found problematic, and I think you saw my friend’s reference to TEH MENZ, and you could not help but jump in to mansplain to us that we were the ones taking things too seriously and taking things out of context and whatever-the-hell else you felt we wimminz weren’t “getting” because you couldn’t STAND for us to have opinions that differed from yours. It would have been easy enough not to engage–as I chose not to engage beyond one comment (and okay; I’m lying, it wasn’t easy at all, but hey, KEEP FIGHTING THOSE IMPULSES LIKE BATMAN). It would have been easy enough to let it go, to say, well, these people have a different take, this meme doesn’t work for them. But you didn’t. You had to let us know just HOW WRONG you thought we were, and how much better you know about all things superhero than we do. Because misogyny.

I don’t know what you meant to achieve aside from parading your own knowledge, but I can tell you one thing you did achieve:  I trust you less than I did yesterday morning. As I said above, I enjoy your rants. I enjoy your takedowns of idiotic memes. But having been on the receiving side of one, I now have to wonder how many times, when you’ve complained about people just not understanding, you’ve painted an inaccurate picture putting yourself in a more positive, and them in a more negative, light than objectivity dictated. How many times have people on the Right with whom you’ve interacted been far more civil and more articulate than you let on? Because I’ve learned you’re loath to admit wrong, and you love having the last word.

I’m going to post this on Facebook. I’m going to post it to a restricted list you are no longer part of, because I don’t trust you anymore. Not because I can’t take criticism, but because you can’t. And in the event you stumble across this anyway, through a mutual acquaintance or just through the randomness of the Internet, I leave you with this reward:

wp-1472850774265.jpg

Congratulations.

Save

Illness Isn’t A Performance

I’m tired of performing my illness.

If you have a chronic illness or a disability (physical or mental) you may be nodding right now. If you’re able bodied and neurotypical, you may be puzzled. What the hell does it mean to “Perform an Illness?”

Maybe I should have led with, “I’m tired of the need to perform illness.” Because it’s not just me. It seems like this past week I’ve seen an unusual number of articles, blog posts, and tweets about performing illness, from this discussion of what constitutes a “real” migraine to my friend being told she doesn’t “Look Sick” (a classic), to a couple of people writing about how tired they are of curating media presence in order to appear to be “doing” their illness “right.”

I’m not the first person to write on this topic. I have no doubt I will not be the last. If you’re here, you probably have some interest in what I have to say, or are at least curious. So here’s my 2 p.

First off, for latecomers to the discussion:  What does it mean to “perform” an illness?

Simply put, performing an illness is aligning the way you present as a chronically ill person with the expectations of somebody who is not yourself. It can also be aligning your presentation to conform to the expectations of a group you’re part of. (I’ll be addressing this eventually, probably in a different blog post.) What your performance looks like depends on context, and it may be affected by things like the identity of the individual or group as well as your own reasons for performing. It might look like moaning a little when you’re enduring a migraine so your partner understands they can’t expect you to cook dinner. Even people whose illnesses aren’t chronic may do it, exaggerating hoarseness and sniffles over the phone so the boss believes it when they call in sick.

The need to perform illness always stems from ableism, whether internal or external. Part of any privilege is the tendency of people with more power to define people with less. Thus, you get white people defining what it means to be Black, thin people defining what it means to be fat, and able people defining what it means to be sick and/or disabled. These definitions are invariably rooted in stereotypes, because they’re created by people who are outside the communities they presume to address.

Applying stereotypes to living, breathing human beings is always damaging, but a unique aspect of the stereotypes about illness is that ill and disabled people can sometimes find benefit in “playing to” them. The stereotype of, for example, fat people as lazy, overindulgent, ignorant of the benefits of “healthy” food, and a drain on resources is overwhelmingly negative. A fat person can alleviate some of the negativity of the stereotype by “playing to” a slightly different one, the “Good Fatty,” i.e., a fat person actively engaged in not being fat through exercise, adopting “healthy” eating habits, undergoing surgery, or a combination. In the case of the ill or disabled person, performing illness to suit preconceived notions of what it looks like usually has results that appear positive. You can gain sympathy, for example, or simply get a rest from having the validity of your illness questioned. The flip side is that failing to perform your illness in a way that fits the stereotype can result in negative consequences. A person who lays aside a needed mobility aid for a short period of time may encounter hateful judgments about whether or not they’re pretending to be ill. Likewise, a person needing accommodation in the workplace may be deprived of it if they don’t need it every single time, or a person with a mental illness may be accused of faking it unless they consistently act irrational, depressed, or whatever other way is considered normative for the illness.

To make matters worse, even people who should know better, like doctors and advocates, can practice ableism when they adhere dogmatically to diagnostic criteria. “Official” designations in the DSM and other resources might be helpful in determining what code will persuade an insurance company to approve treatment (and the need to gain approval from people whose main concern is cost rather than health comes with its own set of problems). However, when dealing with real people, it’s important to remember the experience of illness rarely goes by the book. Some symptoms may be common; others less so. Some diseases manifest differently in different people, or have different forms. We don’t know everything there is to know about illness, whether physical or mental. New syndromes are being identified all the time. The best way to determine whether a person is sick and/or disabled is to listen to that person. Of course, this often doesn’t happen. The Western world has an almost pathological fear of being taken advantage of, of people getting things they “don’t deserve,” and this plays out in its treatment of sick and disabled people.

Here’s an example from my personal experience: A number of years back, during a major depressive episode, it occurred to me that I suffered a real mental illness that prevented me from engaging in the world in a lot of ways, and I might qualify for disability support.

I need to pause here to say that writing the last sentence triggered a LOT of anger in me, for a LOT of reasons. I started experiencing symptoms of depression and bipolar disorder in early adolescence. I developed an eating disorder so severe I almost died from it, and doctors told my parents at least once that I know of that I had a mental illness so severe I “would never be able to take care of” myself [whatever that meant]. Yet the reality of my illness didn’t sink in until I was past forty. I don’t think this is due to the illness, itself. I knew at a young age that something odd was going on in my brain and I begged for treatment. But Western culture is so ableist that it actively encourages sick people to ignore their experience when it prevents them from conforming to expectations. You can see this in every television commercial for cold medicine where a miserable, coughing, sneezing, feverish person downs a magic elixir or pops a couple pills and goes right back to the grind, symptoms relieved. I cannot understand why this is promoted as positive behavior. It doesn’t serve people; it serves employers who can’t be bothered to treat workers as human beings. There may be times when it’s absolutely vital to attend a meeting or intervene in a crisis despite illness, but in all honesty, those times are few and far between.

Anyway. I decided to apply for disability. The process of doing this in the US is horrendous. It’s based on that pathological fear of people getting something for “nothing,” and the powers that be require sick people to jump through a lot of hoops to prove they’re really sick (unless you’re on your death bed; I have a few friends who were granted disability pretty fast when they were not expected to live more than a few months).

I filled out the on line application and it was denied. I learned later that applications are pretty much routinely denied, as a way to sort out those who are “really serious” about pursuing the matter from those who apply on a whim. Since the application is long and difficult to complete in the first place, that seems excessive, but that’s the way it works. I appealed. The appeals process stretched out over two years. It involved gathering documentation from every conceivable source, going back for ten years. Every doctor I’d seen in that time had to provide a statement. My therapist recommended a good lawyer. Without him, I never would have gotten through the appeal. Even with his help, I was tempted to give up more than once.

Because of ableist attitudes, my doctors disagreed as to whether or not my illness constituted a disability. Those who knew me best asserted that it did. Others, who’d seen me rarely or only on good days, said it didn’t. My psychiatrist at the time proved the biggest stumbling block, because despite the facts that I’d never been able to participate in a “normal” job more than eighteen months, had never worked full time at all, and participating in standard workplace environments made me verifiably psychotic and suicidal, he claimed I could handle a job if I “really wanted to.” That is, because I didn’t present as irrational during my meds checks (fifteen minutes once every couple months, the only time he saw me), I was not disabled.

I had to have a hearing before a judge and a panel of experts. My lawyer advised me to let my hair grow out, not to care for my appearance, and to show up in sweatpants. That is, I had to perform my disability right. Putting on what I considered the appropriate clothes to appear before a judge would have been a mark against me. Breaking down in tears during the hearing was a plus. The fact that I’d managed to graduate college was a minus, because people with severe mental illnesses don’t complete college. Etcetera.

In the end, the judge decided in my favor. At this point, some readers may be angry because I “gamed the system.” I’m angry because the system as it is required gaming for me to get my needs met. At the same time as I was going through all this, a friend in the UK was suffering a major depressive episode, too. She went to her doctor, told him what she was going through, and he gave her a slip of paper saying she needed disability support because she couldn’t work due to her mental condition. That was IT.

My experience is one example of the need to perform illness for the able. The consequences of requiring sick and disabled people to perform stretch much further and have an extreme negative impact on our lives. They’ll continue to do so as long as able people are the ones defining disability. One thing I notice a lot is how much the very idea of disability, at least in the US, depends on the normalization of unhealthy aspects of capitalist/corporate culture, like quelling your symptoms with cold medicine so you can go back to work. The idea is, if there’s any way at all you CAN conform, then you’re not considered disabled, no matter how much physical or mental distress you might be in. In this culture, the only way to “earn a living” (in itself a horrific concept) is to work at a paying “job.” Yet jobs providing a steady source of income take limited forms. Even with accommodation, many with chronic physical and mental illness cannot participate in these forms. We may be suited to other work where remuneration is less automatic (or doesn’t exist at all). But there’s always the fear that if you make too much noise about this other work, you’ll sacrifice the support systems that allow you to do it at all.

Here’s another personal example: I’m an author. I’ve published six books in my Caitlin Ross series (gratuitous promo: check out a sample!) As a self-publisher, I do virtually all the work on every book myself. I do the formatting, the interior design, and the editing, in addition to writing the numerous drafts of every volume. Some days I work twelve hours at a stretch. Other days, I can’t work at all due to one or another of my illnesses.

I’m not independently wealthy. The ONLY reason I can engage in my career is my disability (well, that an an understanding partner). The extra $400 a month (yep, that’s all) and the insurance covering my medications assuages the guilt of not “earning a living” enough so that I can focus on writing. Yes, some (most) authors work at full time paying jobs aside from writing. I cannot do this. Working at a job-job takes so much out of me that I simply cannot do anything else. I wish I didn’t have to explain this every time, but I feel like I do because of voices both internal and external that scream “BUT SO-AND-SO WROTE [Bestseller[ WHILE WORKING 12-HOUR SHIFTS AT WALMART; WHY CAN’T YOU?”

Anyway. I live in fear that some government official will see those six novels, or get wind of the days I work a lot, and decide, “If she can do that, she can go get a job at the gas station down the street,” and cut my disability. Because in the mind of an able person, time is time and effort is effort, and what’s the big deal? Even my last therapist made cracks about “people on disability hanging out scribbling in the coffee shop instead of doing something productive,” as if the ability to do one is the same as the ability to do the other. Sick and disabled people are constantly walking this tightrope between performing the disability well enough to be believed and maintaining quality of life, because to able people having any quality of life at all is a privilege to which they alone can aspire.

Really, as far as I can see, the only way of doing away with the need to perform illness is to redefine society’s relationship to it and make room for people to live their lives in the best way they can. It would require a sea change in our relationship to the very concepts of ability and disability, and it would start with listening to sick and disabled people and believing what they say about their experience.

I suppose that’s too much to hope for, but I can dream.