What do you do when the government hates you (sing to tune of “Drunken Sailor”)

This administration – actually, the entire GOP with few exceptions – has been, and is, conducting a systematic campaign to dismantle protections and supports for people with disabilities. Of course, they have other targets as well – immigrants, people of color, Muslims, LGBTQ. But I’m going to focus on the disability aspect, because it doesn’t get as much attention, and of course, it has a very immediate effect on my life.

Let’s look at a list of changes the administration has made, or attempted to make, specifically targeting disabled people:

  • Block grant or per capita caps on Medicaid (attempted)
  • Allow health insurance to discriminate against/price out of the market people with preexisting conditions (attempted)
  • Destabilize the insurance markets so that only people with preexisting conditions will remain buying full insurance packages, at unaffordable prices (accomplished by executive order)
  • Cut Medicaid by trillions of dollars (in process – budget resolution passed by House and Senate)
  • Cut Medicare (in process – budget resolution passed by House and Senate)
  • Cut SSDI (in process – budget resolution passed by House and Senate)
  • Cut SSI (in process – budget resolution passed by House and Senate)
  • Weaken IDEA by getting rid of established guidelines for implementation (accomplished – rescinding of 72 Dear Colleague letters relating to special education)

Regarding the last one – the rescinded letters are already in the process of disappearing from the department of education’s website. You can find a list here: Dear Colleague Letters  Since last night, many of the links to the letters have become unavailable. There’s a good chance that by the time anyone reads this blog post, they will all be gone.

Remember when the White House page on disabilities mysteriously disappeared?

I wish I could muster up a bitter joke about all of this, but truthfully I see no humor in it. There’s nothing funny about the people in control of the government having it out for you and your child. There’s just a continual ebb and flow of anger, grief, and fear, and a persistent chill.

The White House says this is about trimming away unnecessary bureaucracy. That’s not what it is. I dislike bureaucracy as much as anyone (maybe more than most, since I have to deal with it every day in the medical and school systems), but this is simply a stripping away of protections and supports from a particularly vulnerable population. A population that has fought hard, for decades, to have these protections in the first place.

I can’t get my brain around this level of selfishness, greed, lack of empathy. Sometimes I find myself staring into space asking no one in particular “Why do they hate us so much? Why?”

In reality, they probably don’t even care enough about us to hate us. Hatred expends too much energy.

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Traffic tickets: a regressive tax on driving

In case you didn’t know: you don’t have to speed or drive recklessly to get a traffic ticket. I received a ticket last week and I wasn’t even driving the car. My crime? I forgot to put my seat belt on right away.

I was distracted by my 3-year-old having a meltdown in the back seat. A few minutes after my husband pulled out of the parking space, I realized I wasn’t wearing my seat belt and I put it on. But it didn’t matter. In those few minutes, a cop had seen me. It didn’t matter that I’d already fixed my brief mistake. I was given the choice between paying a fine of $82 (plus increases to my car insurance) or going to court. I chose to go to court – taking the risk of court fees being added to a ticket that we already can’t afford.

$82 is a lot of money to us. That’s a month of running water. That’s a week of food.

Every month, do you know what we have left after we pay the rent, the utilities, the car insurance, student loans, our health insurance premium, the monthly payment for Mr. Anarchist’s brief ER visit months ago which we will spend a year paying off even though we’re paying for health insurance? About $200. For a month’s worth of gas, food, hygiene supplies, any medical copayments should we splurge on visits to the doctor’s office. I have asthma and I can’t afford the copayment on my inhalers. We can’t afford Monkey’s clothes and shoes and formula. We’re trying to get Medicaid to cover his diapers. It has nothing to do with irresponsible spending. The math just doesn’t work.

So that’s the financial situation, and the state adds $82 for 3 minutes of not wearing a seat belt.

That’s a tax on driving. And it’s a regressive tax. Somebody making a decent income might not enjoy paying an $82 fine, but they’re not going to go hungry or not fill their medications because of it.

Why poor people have iPhones

This post is dedicated to the asshole doctor who said on the radio this morning that Medicaid patients can afford copays because he sees them using iPhones in the waiting room.

Full disclosure: I don’t have an iPhone. I have a cell phone from the Paleolithic era which has never heard of the internet, takes smeary pictures that may or may not be images of human beings, and has absolutely no clue what to do with an emoticon. This is because I love-hate technology. I do have an iPad, sort of. The iPad, which was given to me by a relative, who bought it used, appears to be one of the first iPads ever made. Half the apps don’t work on it. I use it to entertain my autistic son during doctor’s appointments (it has some of his favorite videos downloaded) and to access the internet during his surgeries/hospital stays. It also serves as our family’s camera. My laptop is only a little bit broken; as long as the screen is at a certain angle, it works just fine.

I have, however, worked alongside other poor people who do have iPhones and I think I may be able to offer some explanation to those who are confused by this phenomenon. (Not that I’m the first person to explain it, but whatever. Obviously it needs to be said over and over.)

First of all, some people buy themselves an iPhone while employed and then lose their job and have to apply for Medicaid. The organization that instantly confiscates iPhones from people who’ve just lost their jobs or otherwise encountered hardship has not yet been invented, although I’m sure someone somewhere is working on it.

Other people, like my former coworkers, still have their jobs; their jobs just don’t pay them much of anything. Often, they are single moms (for a variety of extremely legitimate reasons). Sometimes they’re also supporting grandchildren or extended family. They are putting food on the table (possibly with help from SNAP or WIC), they are paying rent (possibly with help from Section 8), they are (mostly) paying the utilities, but paying for medical care is just beyond them. They are stretched to the financial breaking point. At any given time they are likely to have all of $3 in their checking account – if they have a checking account.

So what are these people doing with iPhones?

For many people, an iPhone serves as a cell phone AND a land line AND a computer AND a camera. Phone and internet are basically essential to maintaining a job in our society, and it’s actually cheaper to have an iPhone than to buy all of those things separately. The iPhone might be a gift or a hand-me-down from a relative, they may have bought it used from a friend, or it might be something that they thought about and decided was a good investment for their family. The iPhone might be the thing that helps them stay awake during 12 hour night shifts, or allows them to communicate via FaceTime with their teenage kids when they have 36 hours of back-to-back shifts at different jobs. (Yes, people do that. It’s insane, it’s probably dangerous, but they do, because they’re trying to survive and take care of their families.) And finally, handing that iPhone to their child might be the thing that saves their sanity on days when they feel utterly, utterly exhausted, and yet they still have to drag their children to an appointment with a shit doctor who is judging them from the moment they step into the waiting room.

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

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.