The opioid crisis scares me – but not for the reasons you think.

I’m very concerned about the rhetoric I’ve been hearing around the opioid crisis.

People who use opioids for chronic pain have been talking, for a while already, about doctors suddenly cutting their dose, dropping them as patients, or subjecting them to questioning every time they need a prescription refilled, due to the new guidelines and restrictions. As the opioid crisis is proclaimed to be a national emergency, people who live with disabling pain are being stigmatized as addicts and drug-seekers, even by the medical establishment on which they depend.

While there are some valid questions about whether opioids are the best way to treat chronic pain, this is absolutely the worst way to address that issue. Better ways would include improving access to medical marijuana and to therapies like acupuncture and biofeedback that are proven to reduce some types of chronic pain. But even if we were to do those things, there would still be some people who need opioids, and they shouldn’t be shamed for that.

But it’s not just about chronic pain. It’s also about acute pain – particularly acute pain in people with mental disorders and/or histories of psychiatric care. Like me.

When I read or hear things about doctors prescribing “a week’s or month’s worth” of Percocet after a major operation when a few days’ worth “should” have been “enough” – I think of the aftermath of my c-section. I had a particularly nasty type of c-section after a prolonged and painful labor. I was prescribed two weeks’ worth of Percocet, and I took every precious pill. And I needed every one.

I was also on high-dose ibuprofen, but the Percocet was what made the difference between functioning and not functioning. The Percocet meant I could get in and out of bed, with help, without fainting from pain. The Percocet meant I could walk without feeling like my abdomen was starting to tear open. The Percocet meant I could take a shower without ending up in a sobbing huddle on the floor (although I was still close to that at times). And it meant that I could visit my newborn son in the NICU, hold him, and pump milk for him.

 

I did not become addicted to Percocet. But according to articles like this one, I was highly at risk of doing so, because I have a longstanding mood disorder and I had severe postpartum depression after my c-section.

Furthermore, I currently take a benzodiazepine (low dose, PRN) for acute anxiety, and combining opioids with benzodiazepines increases the likelihood of an overdose.

All of which makes me wonder. In the future – as reaction to the opioid crisis intensifies – if I were to have a serious accident, or another major surgery, would I be denied an opioid medication, because of my history of depression? Would I be under-medicated for pain, because of my responsible use of a prescribed anxiety medication?

I am NOT suggesting that it’s not a good idea to label things or to warn patients about the danger of using both drugs at the same time. Awareness is good. Increased availability and quality of mental health treatment would also be good, not just for people who are already addicted, but for those who are at risk of self-medicating with pain medications because their insurance won’t cover a decent psychiatrist.

You know what else would be good? An economy that doesn’t constantly punish people by making them work longer hours for less pay and less benefits while their living expenses steadily increase, only to see their jobs one day disappear.

A caller brought up the economic aspect of the problem on an NPR program I heard last week. Bertha Madras, one of the five members of Trump’s commission on the opioid crisis, responded that the solution to difficult conditions is to work harder (because that worked for her), and that we have to change “a culture that normalizes chemical coping”.

Which, to me, sounds like a call for more stigma. Let’s stigmatize the poor so that they work harder. Let’s stigmatize addiction more. And how do you deliberately stigmatize “chemical coping” without worsening stigma for people who take psychiatric medicines, especially ones with addictive potential?

What I fear is a world in which a postpartum woman can’t hold her newborn because of poorly controlled pain, and is stigmatized as a drug-seeker when she asks for something more effective, because she has a psychiatric history. And I wish someone would talk about that.

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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.

Blargh

I have things to say, I just can’t access them past all the rage. So, all I can really say is that with regard to myself, my son, and various other people that I love – I feel that our right to exist, to live, our worth as human beings is under attack by the government right now.

Shocker? Maybe, maybe not. I’ve just never felt it so keenly. I guess that says something about my own privilege.

Things that go bump in the night (weighted lap pads, health care bills)

Well, I’m back. Back from a refreshing, wonderful, not-long-enough vacation to – whatever this is. “Real life”?

Monkey did much better on this trip than the last one we took (which involved self-injurious meltdowns, regression and dehydration). This time, we were prepared. We brought a binder full of visual supports, headphones, an iPad with his favorite games and videos, fidgets, a weighted lap pad with farm animals on it.

The lap pad was very calming for him on the plane. Unfortunately, it had the opposite effect on the TSA agents. On our flight out, they searched my carry on, questioned me about it and then tested the lap pad for explosives. On our flight back, I removed it from the carry on before sending it through the scanner. They still questioned me and tested it for explosives. (Behold the terrifying object: Find Me Lap Pads) Despite the hassle, I will definitely bring it the next time we fly, because aside from lowering his stress level, it’s the ONLY thing that keeps Monkey from continually kicking the seat of the person in front of him.

I tried hard to avoid thinking about Monkey’s doctor’s appointments, therapies, etc, while on my vacation. However, I have been following the progress of the AHCA in the Senate and have been continuing my healthcare advocacy on and offline, contacting legislators, speaking with human rights organizations. I saw the footage of protestors being dragged out of their wheelchairs and carried away by police. That’s our future if we don’t fight back – except that, eventually, the cameras won’t be there. So, once again …

CALL YOUR SENATORS! Especially if they are Republicans. Tell them to vote NO on the AHCA.

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