How to lose a friend (when you have a child with special needs)

1) Start out with a baby with unexplained delays. Befriend a mom whose baby also has unexplained delays. Talk a lot about your babies and their delays.

2) Live in affordable housing, in an apartment that’s not big enough to put all your stuff away even on those days when you have the energy to try. Make your living space look like a disorganized hospital by lining up oxygen tanks in the entryway and hanging nasal cannulas off chairs.

3) Find ways for your child to be in the hospital a lot; it interferes with scheduling play dates, and also makes your friend feel obligated to care even after the novelty has worn off (like, really? the hospital again?). Ideally, this should start happening right around the time that your friend’s child is outgrowing her delays and needing fewer services. It also helps if you can get a few new, unexpected diagnoses during this period to stress over and talk about in detail.

4) Share hilarious anecdotes, like how you once splashed yourself in the face with your child’s lymph fluid while emptying Jackson-Pratt drains. (Also a great way to avoid making new friends, should you find yourself in a group of moms.)

5) Keep venting about therapists, doctors, DMEs, and your concerns about your child’s development, while your friend has nothing to say in that area because her child is basically typical now and this stuff is no longer a significant part of her life.

6) Try to convince yourself she’s not passive aggressively telling you something when she cancels play dates at the last minute “because she has to do laundry”, or leaves food on your doorstep after you get back from the hospital instead of coming in. Keep texting her to ask how she’s doing and if she wants to get together, even though you’re always the one initiating it. Let your suspicion and resentment simmer quietly.

7) Stop texting her for a while because you are completely overwhelmed with illness, ER visits, pediatrician visits, another sleep study, trying to get your child to tolerate a nebulizer (no really, it’s an octopus!), trying to figure out the whole process of transitioning from early intervention to preschool, and scheduling two different autism evaluations because the people from the first place stopped calling you back and still haven’t given you a date. Notice in some part of your subconscious that she hasn’t commented on any of your medical updates on Facebook, even when your son was in the ER on Christmas Eve.

8) Ask how she’s doing. When she doesn’t respond within ten minutes, ask if she’s ignoring you.

9) Get a lecture about how you haven’t been contacting her either, and how she’s been really busy with buying a house in an upscale neighborhood so her daughter can go to the best preschool.

10) Drawing on months of carefully controlled, slow-simmering resentment, say something sarcastic implying that your life is harder than hers. Be told that you’re a crap friend because all you talk about is your child’s medical issues and she doesn’t want to hear it.

11) Completely explode. Use profanity. Be as insulting and mean as you possibly can. It’ll feel good for about 10 seconds. Maybe a full minute. Make sure there’s no possible way she’ll ever want to hear from you again.

12) Take a benzo so you can settle the adrenalin enough to get some sleep, because you’re touring the special needs preschool in the morning. Feel guilty and analyze the reasons why you’re a horrible person.

13) Realize that you should have let the friendship die quietly months ago, and the main reason you didn’t was because it was your only shot at play dates for your socially challenged son.

14) Decide to do better next time.

Trust me, this works really well. I think it might actually be impossible to keep a friend if you faithfully follow all these steps. Good luck!

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.┬áThis 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.

daniel-tiger-anarchist

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.