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.

Evidence that Daniel Tiger’s Neighborhood is really an anarchist commune disguised as a constitutional monarchy

Monkey’s favorite show is Daniel Tiger’s Neighborhood, the animated spin-off of Mister Rogers. He watches it a lot. Thus I also watch it a lot. As in, I have entire episodes memorized down to the inflection of each sentence and I sing the songs absentmindedly in public restrooms.

In watching this show on a daily basis, I have noticed things that lead me, unavoidably, to the conclusion that despite the presence of King Friday and his royal family, the whole neighborhood actually operates on anarchist principles.


1) There’s no money. Mom Tiger goes to the bakery and gets bread and leaves. No money exchanged. (There’s something like a cash register on the counter in the bakery, but nobody uses it and that thing looks seriously antique; Baker Aker probably keeps it around as a curiosity from one of those weird capitalist societies.) The whole family goes to a restaurant and there’s no bill. Daniel goes to the doctor and nobody is asking his mom for a copay first. I don’t think they even have library cards.

2) Free public transportation. (Also sentient. Bonus points.)

3) The Enchanted Garden is a communal vegetable garden and orchard where anyone can go to get free food at any time. There’s also a community farm where they keep the livestock and horses that anyone can ride.

4) There’s no janitor in the neighborhood, so presumably everyone – including the royal family, who can be seen sweeping walkways after a storm – does the deep cleaning stuff on a rotational basis. Further evidence for this is the song, “Cleaning up is a gift we give / To each other each day.”

5) Another song: “Everyone’s job is important! We all help in different ways.”

6) Another song: “If there’s something you need, try to make it yourself.” (Not good capitalism!)

7) All the jobs that would be minimum wage in a capitalist society (grocery store clerk, waiter, babysitter) are performed by Prince Tuesday. The royal family can be seen engaging in various mundane tasks such as cleaning, and King Friday’s only real role seems to be announcing holidays and the occasional community vote (more on this later).

8) They have an official holiday called Neighbor Day which is celebrated by performing random acts of kindness.

9) There are no police officers in the neighorhood. When Daniel fantasizes about being a police officer, all he does is hold a stop sign to help animals cross the street, which is proof that he’s been brought up with no conception of law-breaking or prison.

10) Unless Daniel’s parents are independently wealthy from an inheritance, there’s just no way that Dad Tiger could be supporting the whole family with his very part-time clock business. Even if he does export some of them to other towns, how much of an income does that really bring in? With Mom Tiger as a stay-at-home, how are they covering all the medical bills for Baby Margaret’s birth?

As far as I can tell, everyone contributes to the community by means of their job and basic maintenance of the communal spaces. So Dad Tiger makes clocks and does handyman stuff, Mom Tiger is a caregiver, X the Owl is the librarian and also in charge of the community recycling program, Teacher Harriet teaches and runs a community garden, Music Man Stan gives free music lessons and instrument repairs, Lady Elaine runs the factory, Mr McFeely is the mailman and resident pedophile who would be in jail just on the basis of his name if they had a jail, Henrietta Pussycat sings and dances at the local nightclub, King Friday and Queen Saturday take care of the administrative stuff and announcement making, and they all help with cleaning and gardening and such. In return, they all get the above-mentioned free transportation, free food, free childcare and school, free healthcare etc.

11) This one’s sort of the exception that proves the rule. In one episode, King Friday announces that the neighborhood is getting a new piece of playground equipment, and since the children are the ones who will use it, they will vote on whether they want a swing-set or a slide. Out comes the polling booth and tyranny of the majority, leaving the “losing” children disappointed and despondent …. And this would appear to contradict my whole theory.

BUT notice that it’s the children who are voting. No actual democracy or constitutional monarchy lets children vote. And the adults don’t vote at all. From this, I conclude that this is a teaching method: the gateway into individual and group decision-making for the children. As they grow up, having personally experienced the limitations of majority voting, they’ll be introduced to more sophisticated ways of making decisions as a community.

So there you have it. I let my child watch anarcho-communist propaganda on a daily basis.

And I feel good about it.

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.

How to think like a spy

Full disclosure: I have no experience at all as a spy, unless you count watching parodies of James Bond movies.

However, when dealing with our current political landscape, I think there is a lesson to be learned from the spy movie mindset.

Say you’re a spy (in a James Bond parody) named Credulous Dude. You have to save the world from a villain named Evil Megalomaniac. As you go about this, you meet another spy named Mysterious Agent who is also working to overthrow Evil Megalomaniac. You start working with Mysterious Agent because, obviously, since both of you are against Evil Megalomaniac, you are on the same side – right?


Actually, as you find out later in an unpleasant scene involving torture and humiliation, Mysterious Agent is working against both Evil Megalomaniac AND you. He was just using you against his other enemy before taking you down, too. What you thought was a landscape of Good vs. Evil is actually Good vs. Evil vs. Evil. (Assuming you are actually good, which you may not be too sure of now …) And there could be an indefinite number of other evils, which are also opposed to each other and to you.

Most of us non-politicians think way too much like Credulous Dude at the beginning of the movie. Maybe we think that the foreign government is Evil Megalomaniac and our government is Mysterious Agent. Maybe we see these roles reversed: our own government is the bad one. But actually, we should distrust them both. We should distrust their motives, their selection and presentation of information, everything.

I have repeatedly explained to my mother that I am not pro-Putin, but every time I say anything to the effect of:

“I’d like to avoid a nuclear war with Russia,”

or, even worse:

“I don’t trust our government”

what she hears is:

“I love Putin. I hope he takes over our government and runs it from the Kremlin.”

She hears this because she is mentally living in a Good Vs. Evil universe. Many people do, which is why I’ve had similar conversations with many people besides my mother. At the same time, for the same reason, some progressives and radicals who are critical of the U.S. government’s actions feel it’s necessary to defend everything Russia does. These are variations on the same type of thinking.

Global politics is messy and many-sided. As the various Powers That Be fight with each other, bribe and blackmail and manipulate and threaten each other, make deals and alliances with each other, shift loyalties, change the stories being told about each other, and so forth, the only thing that seems to be consistent is that we – the ordinary people living under these various powers – do not have their loyalty.

We are pawns to be used in their planet-sized chess game. We can be manipulated via propaganda to believe things that benefit one side or another. (The manipulation comes from foreign governments AND from our own.) They will play us against each other. They will be “on our side” when it benefits them. They will listen when they absolutely have to.

I do believe that there are individual politicians who are good, principled people. They generally don’t have very much clout in the government. We need to stop looking up to politicians as if they are our celebrity friends or our big brothers (except in an Orwellian sense) who are going to protect us from the schoolyard bully (whether that bully is Trump or Putin or Clinton or God knows who else). They are POLITICIANS. At their best, they are as much on our side as we forcefully demand that they be.

So when it comes to powerful entities, don’t trust anyone. Listen to different points of view. Be skeptical of all of them. Don’t assume someone’s on your side. Think like a spy.