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.

Dear medical staff: can we have the stickers without the gendered assumptions, please?

Monkey’s favorite show right now is “Sofia the First.” He loves the flying horses and the woolly wombeast. He particularly loves Cedric the evil sorcerer, and the dude with the magic show who kidnaps Clover and renames him Mr. Cuddles. (Monkey’s stuffed bunny is now named “Mr Cuddles” and is forced into servitude multiple times a day.) He got really excited a few days ago when he saw Sofia in her purple dress on a puzzle at the library. He also loves to watch the songs from the movie “Moana” (he has a name for each song: “How Far I’ll Go” is “the pig”; “You’re Welcome” is “the big rock”).

So it bugs me when, as this morning, we are at a doctor’s appointment and the doctor or nurse, who is kindly fanning out a handful of stickers for Monkey to choose from, shuffles rapidly past the Sofia and Moana stickers and go straight to Ninja Turtles and Spiderman.

OK, maybe it’s not a big deal. They’re just stickers, right? But you know what, screw that, it IS a big deal. My 3 year old just went through an uncomfortable and scary procedure (which happens to him A LOT) and he should get to pick a sticker that he really wants, not what YOU (well meaning adult) think he should want. I mean, at least let him LOOK at the stickers you would show if he were a girl. Just show all the kids the same stickers! I’m sure there’s a little girl out there somewhere who loves Ninja Turtles and would be thrilled to have the sticker Monkey somewhat reluctantly took for lack of options.

I’m trying to come up with a quick, polite way of letting these medical professionals know that they need to show him the “girl” stickers too. I’m just not sure how to phrase it. I did speak up once, and Monkey delightedly chose, from a full drawer of stickers, one with Dora on it, which was his favorite show at the time.

This is 2017, folks. It’s not even about gender identity or sexuality at this point, it’s about acknowledging that human taste doesn’t fall into neat stereotypical boxes along arbitrary gender lines.

When I was little, I loved dinosaurs (still do). I put bows on my dinosaurs and made them marry each other. I played with a “boy” thing (dinosaurs) in a “girl” kind of way (weddings), just like Monkey enjoys a “girl” thing (Sofia) in a “boy” kind of way (evil magician). (Even these designations are arbitrary; I love a good evil magician as much as the next person.) But it doesn’t occur to companies to sell shirts with dinosaurs wearing bows in the girls’ section of the store, or with Cedric and his evil crow in the boys’. I can’t decide if this is prejudice, or capitalism, or a lack of imagination. Maybe all of the above.

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.

Bubbles in the sun

I write a lot of angry posts, because I’m angry a lot. I have reasons to be angry. But there are reasons to be happy, too, and this is a happy post. Today I watched my son and a little girl who’s spent most of her life fighting for it, play outside together.

I’ll back up for a moment. Earlier in the day, I took Monkey to a group activity with other children his age. During the hour we were there, he did not talk to any other children and none of them tried to talk to him. He spent a large chunk of his time waving a stick in front of his face and scripting, which is his favorite activity right now. At one point another little boy ran into his stick and decided that Monkey was “mean.” I then got to hear his mother’s comments about how my son shouldn’t be waving a stick around (probably true, but good luck stopping him).

This is pretty typical of our social interactions lately. Monkey hasn’t had a play date in months, since my last mom friend left the area and then (for bonus points) told me she didn’t want a friend who talked about her kid’s health problems all the time. When he is around other children, he doesn’t know what to do, and they don’t “get” him.

Anyway, we ran some errands and went home. Monkey relaxed with his favorite TV episodes and waved his stick without constraint. It warmed up outside, sort of; it was sunny enough to pretend it was warm. We went out into the courtyard of our apartment complex to play with the giant bubble wand, and were joined by a little girl who lives in another apartment with her grandmother. We’ve run into them several times before.

Monkey and the little girl took turns with the bubble wand for a while. Then I made bubbles, and they chased them. Then they chased each other. While they ran around, I learned from her grandmother that, although her hair has recently grown back in, the girl has been battling cancer since she was a year old. I then shared Monkey’s medical history, as best I could with the language barrier we were dancing around. We watched our children, both of whom have spent too much of their short lives in hospitals, and in pain, and isolated, and hooked up to medical equipment, run and scream and laugh together on the sunlit grass.

Soon they had to leave, although the girl didn’t want to. The moment broke like one of Monkey’s bubbles, but that unexpected human connection, so close to home, stayed with me. Monkey kept telling me, excitedly, that the girl had played with him. He felt it too.

I hope they’ll get to play together again.

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!

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.