I need a vacation.

Like, really really bad.

I’m beyond burned out. It feels kind of like depression, but it’s not, because if I spend a whole day sleeping I actually feel better afterwards. I keep starting things and then stopping them because I don’t have the energy to see them through. I don’t even have the energy to be effectively angry about the AHCA and all the other garbage the GOP is inflicting, or trying to inflict, on us.

Half the time I can’t remember what I’m doing. I know I’ve done some hilariously silly things lately – of the putting your keys in the refrigerator variety – but I can’t remember the specifics of what I did. So that’s not very funny.

What I know I’ve been doing – taking Monkey to doctor’s appointments and therapy and school evaluations, making complaints to the school district, scheduling more appointments, rescheduling them, grocery shopping and cooking (why do our bodies require so food so frequently? WHY???), deep cleaning the apartment (I seriously need a maid – I can pay exactly $0 per hour, anyone interested?) and of course making sure Monkey is washed, fed, medicated, clothed, intellectually stimulated etc. He just got his first pair of eye glasses, which look incredibly cute on him. We had a last-minute trip to the pediatrician today to try to decipher this cough he’s had for a while – to figure out which of his conditions might be causing it and whether it’s a serious one or not so much. He’s got a sedated MRI coming up. I can do all that stuff, I just have nothing left over. I’ve been dealing with my own health issues as well.

Fortunately, Monkey and his dad and I are going on a trip, very soon, to visit family. This means that for a while someone else will prepare my food and play with my child. It’s going to be fantastic. Maybe when I get back, I’ll have the mental energy to write a blog post about something other than how tired I am.

In the meantime, if you’re reading this and you DO have energy, PLEASE tell everyone you know how horrible the AHCA is. I’m not sure why the GOP is so determined to deprive kids like my son of decent medical care by segregating them into under-funded “high risk” pools; I suspect it has something to do with those big corporate tax cuts they’re handing out. Whatever the motivation, it’s not OK. It’s evil, actually.

So tell your senators, especially if they’re moderate Republicans. Yell at them for me, because I’m too tired right now to yell.

When you’re low income, everything you do is wrong.

I’m almost finished reading Linda Tirado’s book Hand to Mouth: Living in Bootstrap America. I only discovered it a few days ago, so the fact that I’m almost done means it’s good. Unlike most people that explain poverty to the middle classes – for instance because they got a book contract to go undercover in low-wage jobs for a couple of months, *cough* Barbara Ehrenreich *cough* – Tirado’s been legitimately poor. (The only reason she’s not still poor is because she got paid to write this book after a freak incident where a post she’d written on the internet went viral and was picked up my major newspapers.) She gets into the psychological and physical effects of poverty in a way I’ve never seen before.

What the book really is, overall, is a reminder that poor people are actually human beings, and an elaboration of what that means. It shouldn’t be needed. We shouldn’t need a book to say, “Hey, guess what, we may not have a savings account but we still have pride and dignity and emotions and values, we have the right to have relationships and families and to pursue happiness in whatever little ways are available to us.” But we do need that book.

Because in many Americans’ minds, when you need any kind of government support (never mind how many jobs you’re working), you are suddenly reduced to a subhuman parasite on society and everything you do to survive and get through your day is an irresponsible waste of other people’s money. For instance:

You used food stamps to buy junky frozen food because it’s cheap and satisfying and you’re trying to stretch that money? You’re a horrible person. The rest of us will have to pay for your ER bills when you develop diabetes.

You used food stamps to buy organic strawberries because you’re concerned about pesticides? You’re a horrible person. How dare you waste taxpayer money on such luxuries as uncontaminated food.

You bought a toy for your child? You’re a horrible person. Don’t you know that your child should be wearing rags and begging joylessly for scraps of rotten food outside Trump’s hotel? Why are you even breeding anyway?

You have an iPhone? You’re a horrible person. I don’t care how you got it, or if it’s the only technological device you have (doubling as phone and computer), or what you use it for (staying awake during the slow parts of your 14 hour night shifts at a group home, for example); the fact that you own this one item is proof that you’re using taxpayer money to live in the lap of luxury. You probably live in a mansion and buy brand-name clothes directly from the designers and do heroin.

(But when rich people actually do all that stuff with their corporate tax breaks, it’s totally OK. For some reason, a multi-billionaire’s yacht is a better use of tax money than our heating bills or our kids’ lunches.)

When you’re low income, you’re made to feel your supposed lack of worth in a hundred ways, from your employer’s expectation that you’ll be available every minute of every day for your part-time job that doesn’t pay the bills and has zero benefits (in other words, your time is worth nothing), to the demand that you smile and be cheerful all the time in the face of verbal abuse from customers and supervisors (in other words, your emotions are worth nothing), to the lack of bathroom breaks at many low-wage jobs, or requirement to ask permission (in other words, your basic comfort and privacy is worth nothing), to the insistence that, while dealing with all of this day in and day out, you feel properly embarrassed for taking whatever help you need to feed your family.

At one of the group homes where I worked, the director decided to save money by making employees bring their own toilet paper. Well, some of the residents used toilet paper, too, so that meant we were supposed to use our part-time minimum wage money to provide toilet paper for ourselves and for the residents. Mind you, nobody bothered to tell us this ahead of time. I just showed up to work one day and discovered, when I needed to pee, that there was no toilet paper in the house. (Or paper towels.) I called my supervisor and was told I needed to provide my own. I pointed out that I was alone with three medically fragile residents in wheelchairs, so I couldn’t leave; someone would have to bring me toilet paper. My supervisor told me he would bring it himself after he was done with his meeting and all his other work. It would only be a few hours. No big deal when your bladder’s about to explode, right?

Fortunately, I was able to get my husband to bring me a roll of toilet paper on his way to work. If our schedules had been different, or if I’d waited another ten minutes, that wouldn’t have been an option.

Another time, at a different company, a supervisor reprimanded me for eating lunch on my shift. It was a 12 hour shift with no breaks, and I was pregnant.

When you work in these kinds of jobs, there are dozens of these little humiliations. Coming from a middle class background, I was shocked at how I and my coworkers were treated. My coworkers weren’t shocked, just pissed off.

Anyway, this is my personal spin-off rant on some of the subjects that Tirado addresses more coherently and with more depth. I particularly groaned over the incident where she had to pay back SNAP benefits because of a government error that she had repeatedly called the state about (this happened to me, too, with slightly different details). She discusses exhaustion, depression, the sense of never catching up. And she’s good at illustrating just exactly why it’s not possible (or even rational) to be responsible and plan ahead with money when you don’t have enough for the basics.

On the other hand, I will just note that I can’t really relate to what she says about having children. It’s not that I disagree with her in principle, but my experience parenting a child with multiple medical and developmental issues is very, very different from Tirado’s experience raising her typical children. But that’s because my parenting experience is very different from most people’s. She’s also much more accepting of capitalism than I am, although the mutual class resentment that’s on full display in her book seems to me like a pretty good argument for something else.

I’ll just end this with a passage from Tirado’s book that I found particularly poignant. No comment; it speaks for itself. A lot of free-market religious conservatives could stand to read it a few times and pray about it.

“Living in low-income neighborhoods, I’ve seen sexual health campaigns aimed at slut-shaming us into celibacy. They talk about things like self-esteem and value and all the usual abstinence arguments. They assume that our bodies are a gift that we should bestow selectively on others, rather than the one thing that can never be anything but our own. […]

These are the bodies that hold the brains we’re supposed to shut off all day at work, the same bodies that aren’t important enough to heal. These are the bodies that come with the genitalia that we should be so protective of? I really don’t understand the logic.

You can’t tell us that our brains and labor and emotions are worth next to nothing and then expect us to get all full of intrinsic worth when it comes to our genitals. Either we’re cheap or we’re not.

Make up your fucking mind.”

–Hand to Mouth: Living in Bootstrap America

Caregiving. Is. Work.

Congressional Republicans, by considering legislation that would eliminate SSI benefits for disabled children, have given me an opportunity to write again about one of my pet issues: the devaluing of caregiving.

If the politicians responsible for this particular budget-saving strategy had any ability to be honest, they would say, “We are unapologetic human scum who have no problem taking assistance from children with cerebral palsy and autoimmune diseases and cancer and giving that money to our billionaire friends so they can buy a second island.”

Of course, they don’t say that. Instead, they write:

“One rationale for this option is that providing SSI benefits to children may discourage their parents from working. Unlike Temporary Assistance for Needy Families, a welfare program that aims to help families achieve self-sufficiency, SSI imposes no work requirements on parents and does not explicitly limit how long they may receive benefits as long as the child remains medically and financially eligible.”

Yeah. Because, you know, it’s not like taking care of a seriously disabled child is work. I mean, those parents might be doing a lot of stuff that would normally be done by nurses, and they might even be doing it 24/7 and be chronically sleep deprived and on the verge of a nervous breakdown, and there might be the life of another human being depending on what they do every fucking day and night, but that’s no excuse for not having a real job.

According to this page , which cites the SSI Annual Statistical Report from 2011 as its source, about 1/3 of single-parent households with a child on SSI have a working parent (i.e., the parent is working and raising the disabled child by themselves) and 2/3 of two-parent households have a working parent (i.e., one parent works and the other takes care of the child). And according to this SSA report from 2005,

“Most children receiving SSI lived in a family headed by a single mother, and less than one in three lived with both parents. A very high proportion, about half, were living in a household with at least one other individual reported to have had a disability.”

In other words, that 1/3 of two-parent families where neither parent works is actually 1) quite small, as most child SSI recipients live in single parent households, and 2) are mostly households in which one of the parents is also disabled and unable to work, leaving the other parent as the caregiver for the child and perhaps for the spouse as well.

Such lazy people. I mean, who spends all day every day taking care of their disabled child and spouse? What kind of excuse for existing is that? Get off the couch and get a real job!

My son, Monkey, who has multiple medical issues that affect things like eating and breathing and sleeping and who also has developmental delays, does not receive SSI benefits. We applied for him at one point and were denied; the requirements are quite stringent. The other parents I’ve met whose children received SSI were single mothers who worked full time or overtime. (But, you know, lazy.) Monkey does receive Medicaid, however, which has been extremely important for him and for our family. Which brings me to my next point.

The politicians again:

“Rather than provide a cash benefit to parents without ensuring that they spend the money on their disabled children, policymakers could choose to support those children in other ways. For example, states could receive grants to make an integrated suite of educational, medical, and social services available to disabled children and their families.”

The irony of this statement coming from the very same people who want to block grant Medicaid, reinstate lifetime limits, etc – taking medical care away from the disabled children they are talking about – and who support a nominee for Secretary of Education who has no idea what IDEA is, would be entertaining if it were not so sickening.

To these people, who preach from their offices about the value of work, who are so afraid they might discourage some low-income parent of a disabled child from working, I want to say something clearly: CAREGIVING IS WORK.

It is work when you’re taking care of a patient in a hospital.

It is work when you’re taking care of a patient in a nursing home.

It is work when you’re taking care of a disabled person in a group home.

It is work when you’re taking care of a disabled person in their own home.

It is work when you’re taking care of a disabled person in your home.

It is work when you’re taking care of an elderly person in their home.

It is work when you’re taking care of a child in their home.

It is work when you’re taking care of a child in your home.

It doesn’t matter whether the person being taken care of is related to you or not, whether you are being paid or not, or what kind of building you’re in. It’s the same work. Someone has to do it if our society is going to be anything worth living in, worth even calling a society. Wherever you are, whether you make money or not, if you are taking care of another human being who depends on you for that care, then you are working.


For more thoughts on the ways our society systematically devalues caregiving: Caregiving vs. Capitalism

Saneism and gun control

Possible triggers: This post discusses gun violence, psychosis, and stigma/slurs against people with psychiatric conditions.

If you’re trying to keep up with the sewage that’s been spraying out of the white house lately, you might have heard that House Republicans repealed legislation that prohibits some people with some kind of mental disorders from owning guns.

I am not sure of the details of this law, mainly because I was too upset by the tenor of the articles about it to read them very thoroughly. Thus I have no particular opinion on this law or its repeal. (My thoughts on gun control are complicated; I believe guns need to be better regulated, but that the regulating should be done by a non-government body accountable to local communities. Having the government solely responsible for regulating guns might be fine until your government becomes a totalitarian entity and then it should be somewhat obvious why that’s a bad idea.)

What I do have an opinion about is the comments I read on these articles. Mind you, these were on “liberal/progressive” web pages, not Breitbart. The comments included such slurs as “mental case,” “nut case,” “mental idiots,” “deranged,” and “homicidal psychopaths,” casually thrown about with absolutely no recognition that these terms were referring to actual human beings with diverse personalities and rights and feelings. They insinuated that all people with mental illnesses of any kind are incompetent to have guns, and that all Republican lawmakers are mentally ill. Because, you know, all people with mental disorders are potential criminals, and being a greedy jerk who lacks empathy can only be explained by mental illness.

Then there are the comments on the recent mosque shooting, claiming that Alexandre Bissonette is mentally ill. This of course happens every time a mass shooting is committed by a white person. I have already seen specific claims that he must have been psychotic. As far as I know, he has no psychiatric history or diagnosis. The only justification for claiming he is mentally ill is that he is a white American male (i.e. someone the commenters identify with) who did something with motivations they don’t understand. I’ve actually seen the claim made – many times – that anyone who shoots another person must be mentally ill.

OK. A few facts. (I will not post links to my sources because they include disturbing details that might trigger some readers, but my sources are all from PubMed and you should be able to find them easily with a search.)

– An estimated 5-10% of gun violence and homicides are committed by people with schizophrenia, bipolar disorder, or psychotic depression. Put another way, 90-95% of gun violence and homicides are committed by people who are not pyschotic – i.e. by sane people.

– Of violence commited by people with these conditions, the vast majority are committed against relatives and friends. (Not strangers in public places.) Usually, the person who is psychotic believes that they are either acting in self-defense or are helping/saving/protecting the victim.

– People with these conditions are MUCH more likely to commit suicide than homicide.

– People with these conditions are MUCH more likely to be victimized by sane people or shot by the police than to commit violence against others.

If somebody does not have a diagnosed psychiatric condition such as schizophrenia, then DO NOT make that claim. DO NOT even speculate about it. It confuses people, and it contributes to stigma against the vast majority of people with schizophrenia, bipolar disorder, and psychotic depression who are far more likely to be victims of violence, or to use violence against themselves, than to inflict it on others.

Dear activists: make your protests accessible!

I tried to attend the local “Swamp Cabinet” protest at my senators’ office today. The key word here is tried.

First of all, the day did not start out well. Mr. Anarchist was out of town for work. I’m getting over a cold. Monkey was up much of the night and insisted on getting up for good at 4:15 AM. A series of accidents followed, some involving bodily functions and others involving objects being broken.

Despite all this, and despite the fact that it takes over an hour to get Monkey dressed and ready and his diaper bag packed, and despite the fact that I disrupted his routine, which can cause some major issues, and despite the drive being half an hour – by some small miracle I managed to get us to the offices on time, even a bit early. And we were prepared. We had signs and snacks and extra layers ’cause it was freaking cold.

But then.

First, there was no parking. Or rather there was, but it was all blocked off for some mysterious reason. I had to park on a nearby street and walk. This meant that I had to use the stroller, because Monkey WILL NOT walk long distances and I cannot carry him long distances as he weighs 40 lbs.

OK, so I have my enormous, medically involved, developmentally delayed two year old in a stroller. We walk through snow and some surprisingly deep puddles to the building. We’re still on time.

Oh look, stairs. Lots of stairs.

I looked for signs that might indicate a different, accessible route. There weren’t any. I started asking people who were walking by where I could push a stroller up. They didn’t know. I walked around one side of the building and up a promising looking ramp, only to find that it dead-ended at a gate with a sign saying WARNING: HIGH VOLTAGE. Then I went around the other side of the building. Finally, I saw a sign that said “Handicap access” with an arrow. I followed the sign, which led me to – I KID YOU NOT – a ramp ending in another flight of stairs.

At this point I was so desperate and pissed off that I actually hauled my 40 lb son in his stroller up multiple stairs. I don’t even know how I physically managed that; pure rage? I found the place I was supposed to meet the other protesters … there was no one there.

Later, having contacted the leader of the event about what happened, I learned that they had gone in to the office just minutes before I got there. But at the time, as I asked around, nobody could tell me about any protest going on. So I gave up and left. At which point I discovered the cleverly hidden, non-stair-infested wheelchair ramp with absolutely no signage to indicate its existence.

OK, the poor design and lack of signs is the fault of the state government, not the activist group. On the other hand, the fact is that if I hadn’t had a child with me or been encumbered with wheeled transportation for that child, I would have been on time to the protest and would have participated.

Instead – for all my political ideals – I felt completely lost and foolish and out of place, wandering around an enormous government building alone, a low-income woman with a special needs toddler, with government workers in business suits going by.

If this group wants to involve people who are disabled, or even just parents with young children in strollers, who may not be seasoned activists familiar with the layout of large government buildings, then they need to address the accessibility issue. That might mean, for example, mentioning it in their materials for the event and providing a simple map showing where the ramp is. It might mean having someone hang around for a while near the street to guide newcomers who are having trouble accessing the building.

A social and political movement that is only accessible to able-bodied, childless adults with flexible work schedules has a major problem. Period. You need the women. You need the parents. You need the working class. You need the folks with disabilities. When there are so many obstacles to overcome just in order to be there, only to find the place inaccessible, people tend to give up and stay home and resign themselves to the reality that they are just not meant to be politically involved.

On black blocs

What follows is not a discussion of the effectiveness or justification of black bloc tactics. I just think it might be helpful if everyone who is scandalized and horrified by the actions of a handful of protesters at the inauguration asked themselves the following questions:

Am I upset more by the breaking of windows owned by corporations that can afford to replace them, than by families having their homes foreclosed and becoming homeless because they can no longer afford their mortgage?

Am I outraged more by the overturning of a garbage can in a city street than by the wanton destruction of the planet’s environment – forests, mountains, water, air, habitats of living beings – in pursuit of wealth?

Am I disturbed more by a masked protester swinging a hammer at an inanimate object (which is not feeding, clothing, medically treating, or housing anyone) than I am by governments dropping bombs on civilians’ homes (and the occasional hospital) in other countries, killing innocent people with drones, and rendering water supplies unusable?

Am I scandalized more by someone punching a professed white nationalist in the face than by the disproportionate infliction of poverty and police violence on black Americans?

Do I find myself more threatened by the illegal destruction of private property during a protest than by the legal violence perpetrated by police on human beings during (for instance) the DAPL protests (eg. setting attack dogs on indigenous protesters including pregnant women and children, spraying them with water at night in freezing temperatures)?

And if so, why?

Again, this is not an argument for or against the effectiveness of these tactics, a defense of any particular action, or a dismissal of all criticism. I just think it might be revealing to explore why more outrage is expressed about these tactics than about the systems of oppression to which they are a response.

Envy and the Affordable Care Act

An anecdote related by the Slovenian Marxist writer Slavoj Zizek tells of a witch who visits a peasant and offers him two alternatives: either she will give him one cow and his neighbor two, or she will take one cow from him and two from his neighbor. Without hesitation the peasant chooses the latter.

— From “Buddhist Christianity” by Ross Thompson

Like many people, I am grieving and terrified right now about the Senate Republicans midnight votes to gut the ACA and reject amendments that would retain some of its provisions (such as protection for those with pre-existing conditions). Given Monkey’s extensive medical history and conditions, this all hits very close and feels extremely personal. (And I will be at my local rally this Sunday, the 15th, to protest.)

I don’t understand how politicians can be so perfectly callous and indifferent to people’s lives; I presume they are so caught up in their world of corporate greed that they can’t remember the definition of the word “conscience.” But there is something else that bothers me, maybe even more, and that is the attitudes of many ordinary people who are not politicians.

These people do not like the ACA. They don’t like that their premiums and deductibles have gone up, and that’s totally understandable. I don’t like that their premiums and deductibles have gone up, either. But they don’t want a solution that would improve their own health costs and coverage while continuing to provide health care for the many people who have benefited from ACA’s provisions. (Such a solution might be, for instance, an integrated non-profit public system financed with higher taxes on capital gains and a progressive income tax that we would pay instead of premiums.) No, for this subset of the population, this solution is absolutely not OK. Only a complete repeal of the ACA with all its benefits and protections will satisfy them.

I am not putting words in anyone’s mouth: this is based on other people’s statements that I have heard in person (in a hospital, among other places) and read online.

Reading these comments, listening to the angry declamations, what I notice is that the lament about their own higher premiums/deductibles is inevitably accompanied by a lament that someone else isn’t paying anything, that someone else has expensive medical needs which have forced their own costs higher, that someone else is benefiting from this law which has made things worse for them. That’s the real sticking point. They hate that they are paying more for insurance than the single mom who works at Walmart and gets Medicaid. They hate that even though their own children are healthy, they are contributing to the pool of money that funds my two year old’s expensive surgeries, hospitalizations, and oxygen rentals. Why should my son affect their budget? Why should they pay a copay when the Walmart cashier doesn’t?

Their discontent is shaped by these comparisons. They don’t consider that maybe they are fortunate to have a job that pays higher than what Walmart pays or a partner with a job who’s not abusive or a child who doesn’t have a life-threatening illness. Those are other people’s needs, and yet these needs are touching their lives, making demands on them. Not demands that they can choose to attend or ignore in the form of voluntary charity, which would make them feel good and superior, but an inexorable claim enforced by the government.

The solution, then, cannot be a single payer system, because that means some form of income redistribution, and redistribution from the healthy to the sick according to need. Even if their own health care were better under such a system, it would be intolerable because of this redistribution, because others would be benefiting more. As in the parable above, they would rather have terrible health insurance as long as the single mom is uninsured, than have good health insurance that they pay into while the single mom is insured without paying.

Another parable that comes to mind here is Jesus’ parable of the workers in the vineyard.

And when evening came, the owner of the vineyard said to his foreman, ‘Call the laborers and pay them their wages, beginning with the last, up to the first.’ And when those hired about the eleventh hour came, each of them received a denarius. 10 Now when those hired first came, they thought they would receive more, but each of them also received a denarius. 11 And on receiving it they grumbled at the master of the house, 12 saying, ‘These last worked only one hour, and you have made them equal to us who have borne the burden of the day and the scorching heat.’ 13 But he replied to one of them, ‘Friend, I am doing you no wrong. Did you not agree with me for a denarius? 14 Take what belongs to you and go. I choose to give to this last worker as I give to you. 15 Am I not allowed to do what I choose with what belongs to me? Or do you begrudge my generosity?’ 16 So the last will be first, and the first last.” (Matthew 20:8-16)

If you read the full parable (not quoted here), you see that the men who worked less weren’t idling away the day in drunkenness (although if they had, I suspect the parable would be much the same). They were waiting around for someone to hire them. There was an element of chance in their being hired last, rather than of will or deserving – which actually characterizes much of our lives, from circumstances of birth and genetics onward. In any case, the owner has not taken anything from those who worked longest; he has paid them their full wages. They are not upset because they have been deprived, but because others who (in their eyes) worked less, received the same as they.

Isn’t this a sad state of mind? It’s precisely the opposite of compassion, which is an identification with the other, especially in the other’s need.

I try to keep religion out of this blog, but this is my prayer that across America, hearts and minds will be opened to the needs of others, touched with humility and gratitude, instead of this selfish pettiness. That each of us, if we have enough, can be happy to see others who have the same – or more – than we do. That we can aspire to solutions in which everyone has enough, instead of solutions in which women, children, the low-income, the disabled, and veterans are punished so that less vulnerable populations can feel better about themselves.