Fat Healthcare

Ragen Chastain has another excellent piece on the way thin people often receive evidence-based care, while fat people with the exact same condition get a prescription for weight loss. Even when the means recommended to obtain weight loss are riskier than the original condition.

A lot of the time, this seems to be less about an objective assessment of risk, and more a way to ascertain who “deserves” treatment and to hold people’s health hostage in order to force them into compliance.

Take knee surgery, for example.  Ragen points out that it’s pretty obvious that nobody’s prioritizing our health…

 when a fat person who actually needs knee surgery is told that they can’t get it because knee surgery is too dangerous, and then they are given the recommendation to have stomach amputation surgery, which is far more dangerous with far worse possible side-effects.

But if it has less to do with the actual risks and complications of the actual surgery, and more to do with viewing fat people as lazy and immoral, and therefore undeserving of care, it makes a lot more sense.  Horrifying, frustrating sense, if you happen to be a fat person who would like to actually get the medical care you need.  If someone’s thin, they’re seen as worthy, but a fat person has to lose weight first, to prove themselves deserving.

There’s also a ridiculous amount of paternalism in medicine, where rather than listening to a patient’s issues, doctors seem to want them to shut up, do as they’re told, and go away as quickly as possible.  This is exacerbated when stereotypes make the doctor see a given patient as “less than” and therefore even less competent to know what they need.  Fat is one example of this, but it also applies to every category of oppression that a doctor can tell by looking at you or infer from your chart. A big part of the terrible maternal mortality rate among black women seems to be from doctors simply dismissing their concerns.

As a white, college-educated woman without any visible disabilities, I probably get brushed off a lot less than a black, visibly disabled fat woman, or than someone whose queerness is more visible than mine because their spouse is the same gender they are.

And yet, it still took 3 different doctors and months of trying to get treatment for hypothyroid. It should have been so very simple.  I was cold and tired all the time, I’d gained a lot of weight despite no change in eating or activity, my TSH was high, and I had a nodule on my thyroid.  It would have been simple if the overseeing doctor hadn’t overruled the PA’s decision to start me on Synthroid.

Nobody ever actually explained to me why this decision was made.  Now, thinking about oppression in healthcare, I have to wonder if the problem isn’t just doctors not listening to patients, but also male doctors blowing off the opinions of female staff, including PAs and nurses, even when those staff interact with the patients more than the doctor does.  It’s hard not to see sexism when the female PA is all set to treat your problem, then the male doctor who you’ve never interacted with swoops in and changes everything without even telling you why.  My mom and my mother-in-law, both nurses, could probably tell enough stories about male doctors being arrogant, sexist, and wrong to fill several volumes.

From there, I went to an endocrinologist who was convinced that my hypothyroid wasn’t causing my symptoms, but had no idea what was, and recommended weight loss.  It was this same endocrinologist who found the nodule and saw nothing at all contradictory about needing to biopsy the nodule and not treating the hypothyroid.  To make matters worse, the biopsy was incredibly painful *and* inconclusive.

At that point, I called it quits with this practice and went to Johns Hopkins.  I had a family member with thyroid issues who was pleased with the care she got there, so I drove two hours to every single appointment.

They put me on Synthroid after the first appointment.  When they went to biopsy the nodule, there was nothing there to biopsy.  After being on Synthroid, it had gone away on its own.

Being on Synthroid was like magic. I could finally get warm.  If my feet brushed my spouse’s leg in bed at night, he didn’t yelp and jump out of bed from the cold.  I didn’t have tons of energy, but I had enough to get through the day without drinking ridiculous amounts of coffee. And my weight stopped skyrocketing upward. All it took was for someone to take me seriously and treat the symptoms I was having, rather than treating weight loss as a panacea or brushing off my concerns without so much as a suggestion of what might help.


You are More than Your DNA

Some of the trans people and allies I follow on Twitter have been targeted for harassment by people with an inflated sense of their own importance who are on a mission to make everyone define gender by their terms.

Their terms are nebulous, depending on whether they want to acknowledge the existence of intersex people and how honest they are about the complexity of biology, but usually they boil down to DNA.  Specifically, chromosomes. Seriously, if someone’s Twitter handle is something like REALWomanXX, just block and run away.

The argument is that DNA is the “real” arbiter of sex, because it can’t be changed. Internal identity, the actual hormones in someone’s actual blood, even the genitals that the anti-trans crowd is usually so obsessed with, those can all be “faked” but DNA is “real.” (It’s also not true that DNA doesn’t change. Not that that nuance is captured in the middle school biology anti-trans bigots favor, because it’s not nearly simplistic enough.)

Setting aside the fact that the idea of DNA as an unchangeable blueprint is based on a false idea of DNA, this would be a completely backwards argument even if DNA were totally unchanging. The pattern or description that remains static while the object it describes changes isn’t some holy grail of eternal truth. It’s an outdated document that no longer reflects the as-built system.  I write technical documentation for a living, and if I were ever to say, “My docs are right, it’s the system that’s wrong,” I’d be laughed right  of the meeting.

As another example, architecturally, my house would be described as a ranch. It’s a long single-story rectangle with a low pitched roof. Presumably, somewhere there’s a blueprint that shows this layout in detail.

But, let’s say I won Powerball and did massive renovations, turning it into a completely different style.  I’m a big fan of Victorian houses, so let’s say I turn my ranch into a Queen Anne Revival. I add a second story and a gabled roof, a massive porch with columns, and a tower. I replace the vinyl siding with wood siding painted in bright Victorian colors. The whole thing is intricately ornamented.

If I’m then giving directions to my house and say, “It’s a two-story Victorian house, and it’s dark green,” no reasonable person would brandish the original blueprints in my face and insist that my house was *really* a ranch.

That’s not to say, of course, that trans people  need to have any particular surgeries or take any particular hormones for their identities to be valid. It’s just to point out the absurdity of any kind of “DNA essentialism.”

Architectural styles have some complexity and nuance, of course.  A house doesn’t necessarily have to have every single element of a style in order to be an example of that style, and there can be variations within that style.  If you add onto a ranch or pull design elements off a Queen Anne, there will be debate about what style the newly remodeled house is.

Human biology has even more complexity and nuance than architecture. Lots of people with XY chromosomes have penises & testes. Some people with XY chromosomes, however, have vaginas and uterii.  Some of those have even given birth (some with the aid of fertility treatments, others without).  It’s not really certain how common it is for people to have the “wrong” chromosomes (that is, ones that don’t match their primary and secondary sex characteristics) because people generally don’t get their chromosomes tested unless they’re already having issues of some sort.

Almost everything we learn in school about human biology should really be preceded by “usually.” *Usually* these chromosomes and these body parts go together, but not always. Add in psychology, and it gets even more complicated, because identity doesn’t reside in your DNA.



Let’s Screw Over Disabled People *and* Decent Employers

I’m so sick of Bernie Sanders right now I can’t even tell you.  While everybody else is paying attention to the small matter of the Senate ramming Kavanaugh onto the Supreme Court as Trump’s get out of jail free card, Sanders is proposing the Stop BEZOS act, which penalizes employers if their employees qualify for any government benefits.

In the abstract, this seems reasonable. Paying a wage that’s only sustainable because food stamps exist *is* stealing from both your workers and the taxpayer. But in concrete reality, it gets messy.

Matthew Cortland posted a Twitter thread explaining the unforeseen consequences, like making it impossible to hire anyone with expensive healthcare needs.  If it costs hundreds of thousands of dollars to keep someone alive, their employer isn’t going to be able to pick that up, unless maybe they’re a CEO.

This seems like an example of rhetoric masquerading as policy.  It’s probably a good point to figure out what low wages cost taxpayers in benefits, especially when the same companies paying minimum wage to employees on Medicaid and food assistance aren’t paying any taxes themselves. But that doesn’t make an individual employee’s benefit payments their employer’s responsibility.

There’s a difference between a fair wage and a living wage (which is part of why we just need a universal basic income).  A fair wage for a job is commensurate with the time and effort the employee puts into it. Generally speaking, a job where you’re on-call 24/7 should pay more than one where you have your evenings and weekends free.  And most jobs pay by the hour.  It wouldn’t be reasonable to expect to do 20 hours of work and make the same as someone who does 40. A fair wage is also commensurate with the profit a company is making off the employee’s labor. It does make sense to pay the person who’s closing million-dollar deals more than the person who staffs the front desk.  Not that the person who staffs the front desk isn’t valuable, but he’s not providing the same value that Mr. Hotshot Sales Rep is.

Basically, fair pay has to do with the value of the work, both in terms of what it takes from the employee in time and stress and in terms of the benefit it provides to the employer.

A living wage, on the other hand, has to do with your expenses. How many people are in your household? Do any of them also have an income?  What about medical expenses? A living wage for a couple with no kids is a lot different from a living wage for a single parent of four.  Likewise, a living wage for two healthy people can be less than a living wage for two chronically ill, disabled people.

Because of this discrepancy, two things happen.  First, employers are punished for things they don’t actually control, like their employees’ medical needs and family size. Because of this, employers are naturally incentivized to hire people who don’t need benefits.  So, the person who most needs the job doesn’t get it.  Maybe, if they’re really lucky and the discrimination is blatant enough, they can get a court settlement, but in most cases an employer will be able to hire someone younger, or healthier, or with fewer kids or a well-paid spouse, and be able to argue that they were also better qualified.  So much of hiring is subjective and nebulous that unless a company hires someone who didn’t meet the qualifications they asked for when they advertised the job, in favor of someone who did, it’s pretty tough to prove any kind of discrimination.

There’s also a lot of discrimination that isn’t even illegal, because it’s not related to membership in a protected class.  Favoring married people over single people is illegal, but favoring people married to lawyers over those married to delivery drivers isn’t.

The other big issue is that the bill makes no distinction between part-time and full-time work.  Sure, keeping someone at 34 hours so you don’t have to provide insurance is slimy, but some jobs legitimately only need a part-time person.  If you’ve got ten hours of work in a given week for a given role, you can’t magically pull another thirty hours of pay out of your posterior, even if only working ten hours a week means your employee qualifies for benefits.  Heck, you might be their second job, then get hit with a fine when their full-time job lays them off and you’re their only employer.

Penalizing part-time work screws over not only small employers, but also employers trying to do right by sick or disabled employees.  If someone can’t perform their full-time job with reasonable accommodations, a good employer might switch them to part-time if that’s what the employee needs.  Depending on the specific situation, this may not be something the ADA would require of them.  But if that switch to part time means the employee now needs food assistance, then under Stop BEZOS, the employer is better off letting them go than trying to make things work.  Even worse, an employer might be able to make that part-time arrangement for an employee whose spouse is well-paid, but not for the one who’s single.  So, the person who could most benefit from time off to recover is out of a job. (In theory, that’s what disability payments are for, but good luck actually getting them without multiple applications and a lawyer.)

The other issue where discrimination comes into play is the stigma against receiving any kind of government benefits. Employers might not get a list that identifies which employees’ government benefits are making them liable for a fine, but in a small company, it might be easy to guess.  Susie has another baby and suddenly you have to pay a fine?  Yeah, you can put two and two together and make Susie’s life difficult. (As if companies don’t already do plenty of that.)  Even if you’re not deliberately setting out to treat Susie badly, implicit bias can still mean that she’s less likely to get promotions or good assignments.

It would be so blatantly simple to just raise the minimum wage to fifteen dollars an hour.  No screwed up incentives for hiring people with other sources of income or firing people who get sick.  No stigmatizing people for having big families or needing to work part-time because of disability.  No effectively different minimum wage based on how many kids you have.  Just a straight-forward increase in the minimum wage.  Apparently that makes too much sense.

Double-Standards of Ableism

Another thing that struck me about proposed straw bans is that even if there are good alternatives to plastic straws for every disability or combination of disabilities (there aren’t), and even if it’s no financial burden to carry your own plastic or reusable straw everywhere (it’s not), it still carries an expectation that disabled people not only have better memories and planning skills than abled people, but also predict the freaking future.

For most people, disability isn’t static.  Even if a condition is lifelong, a disability might get progressively worse throughout a person’s life.  Or it might improve due to better meds or an assistive device that they didn’t have access to before.  There’s also good days and bad days with a lot of conditions.  A person who can easily lift a cup to their mouth Monday might find it painful on Tuesday and downright impossible on Wednesday, for any number of reasons.

Even if disabled people are expected to plan perfectly for their worst days (which we don’t expect of abled people), there’s always going to be a first time that someone can’t do something (in this case, drink without a straw).  Depending on their exact medical diagnosis and their abilities up to that point, this might not be predictable for them.

And those people are going to be among the ones screwed over by all the gatekeeping suggestions to make sure “only those who really need it” can get a straw. I mean, I can just picture that conversation.

“Excuse me, I’m having trouble lifting this glass.  Can I get a straw?”

“Sorry, ma’am, we can’t give out straws without a note from your doctor stating that you need one.”

“Oh, okay, let me just hop in my Delorean, go back in time to my last doctor’s appointment, and get a note for something that hadn’t happened yet.”

This is just one of the many reasons that gatekeeping is bullshit, and accommodations should be freely available whenever it’s feasible.  Restaurants, you know people exist who need straws to drink the beverages that you would like to sell them.  Make sure you have some available.  Doctor’s offices, you know that fat people exist.  Proactively invest in chairs and tables and blood pressure cuffs that work for them.  Employers, if your office building has an elevator that’s locked, consider whether that’s necessary.  Unless there’s a security concern and that key is part of your access control, how about just letting people decide for themselves whether they can take the stairs that day.

We should not be in a situation where we care so much about not even actually fixing the issue of plastic in the oceans, but about performatively “doing something” and “starting a conversation” that we’re throwing out “solutions” willy-nilly without including accessibility in them from the start, and then getting  pissy when people point out that it doesn’t work for them.

Low-Hanging Straws

I’ve been hearing more and more about cities banning plastic straws or specific restaurants doing away with them and I have….some strong feelings…on this issue.  If you haven’t been following it, NPR has a good summary, and multiple disability activists have written about why it’s an issue.

People who don’t need straws themselves are quick to opine on how cheap and easy it is to just carry a reusable one, or suggest that restaurants should offer only biodegradable options.  But, every one of those options has their drawbacks, as illustrated in this handy chart.

The thing that I find the most frustrating is probably the judgmental nature of the criticism directed at anyone who complains about the straw ban. They must just be “lazy” or “not trying hard enough.” And yet, every single person in the industrialized world does things that are detrimental to the planet, for no other reason than their own convenience.  If you use AC outside of massive heat waves, ever drive anywhere you could physically walk or bike, don’t use reusable bags for 100% of your purchases, or have ever ordered something online that you could have picked up locally, you don’t have room to criticize people who need single use straws. Or who just want to use them. Disabled people, like all people, deserve to enjoy things. If bringing a reusable straw is a hassle that you forget to do, or biodegradable straws make your drink taste weird, you still deserve to enjoy a freaking Frappucino.  Even if you’re not going to aspirate fluid and die of pneumonia if you try to drink without a straw, but maybe it’s a bad pain day and lifting a glass hurts. It’s nobody else’s place to tell you that you must suffer for the environment, particularly if they’re not suffering themselves.

I also think people are ignoring all the times that having something to eat or drink *is* a medical issue. Sure, the majority of fast food and beverage purchases aren’t made by people who are about to keel over from dehydration or low blood sugar, but some are.  I have vivid memories of being out with a friend who has hypoglycemia, who literally fell over because his blood sugar tanked, and being profoundly grateful that we could find a soda machine and he could get some sugar into his system.  I’ve fortunately never had heat stroke, but I’ve been sick enough to vomit or almost pass out from heat on multiple occasions, and if I’d needed a straw for fluids and not had access to one, I could have easily ended up in the hospital.

If restaurants want to reduce plastic use, there are lots of ways to do it. If they want to start with straws, they can even do that without screwing over disabled people.  Ask people if they want a straw, rather than offering it automatically.  Make sure you’re providing a place to recycle. Offer a biodegradable option or sell reusable straws if you want, but don’t ask everybody to use these.

I’m iffy about suggesting this for big chains, because ableism is prevalent and getting everyone trained to the standard you want can be problematic. Leaving it to cashiers and baristas to make sure people who need straws get them might mean that people have to explain what their disabilities are, or get snotty comments about the environment from an overzealous employee. Or, they might be non-verbal, and the touchscreen menu doesn’t have a way for them to indicate that they need a straw with their drink.  In all cases, I think it should be on the restaurant to offer, rather than the customer to ask.

Obligatory Sappy Romantic Post

Today, I take a brief pause from ranting about the state of the world to celebrate the fact that I’ve been married to the best guy ever for twelve years.  We’ve been through infertility and pregnancy loss, and all manner of chronic health issues.  He supported me through a career change and a master’s degree.  We bought a house, did a bunch of work on it, planted a garden, accumulated too much stuff, did more work, got rid of stuff and accumulated different stuff.  We’ve fostered dogs, and a cat, and hope to foster children.  We’ve been to London, and Alaska, and Pennsic.

I’m looking forward to the next dozen years, and the next, and the next.

Actually, it is personal.

I miss high school debate.  Getting assigned a topic, researching the hell out of it, putting together a convincing speech.  We talked about serious issues, but to me, it was always fun. Looking back on it, I now see that as privilege.  It was never anything that affected me personally, so I could look at it from a safe distance.  I remember debating against affirmative action, and now I marvel at the absurdity of having a bunch of white kids, many of whom went to all-white schools, debate affirmative action as though it was something we actually understood anything about.

I find myself losing my cool more often in Facebook and Twitter debates, and I’m realizing that things that are deeply and intensely personal to me are just thought exercises for other people.

I haven’t been able to convey the extent to which the 2016 election broke something inside me.  I’ve been grieving for a year and a half, and everything feels irredeemable. And yet, I see so many people acting as though everything’s fine.

My friendships with conservative-leaning people have been more than a little strained.  I’m okay losing the person who tells me that “well, *actually,* Donald Trump is an ally to the LGBT community” and then, predictably, doesn’t say, “wait, shit, I was wrong,” when he bans trans people from the military.  But for the people who haven’t actively been hateful to me, there’s this chasm between us that I don’t think can be bridged.

I want to scream, “You voted for someone who literally does not think I’m a person” in their faces, but they’d just argue about how *clearly* Trump doesn’t hate women because look how proud he is of his daughter.  Or that I’m unfairly accusing them of misogyny.

Because the sexism isn’t personal to them.  For the guys, they can just ignore it.  It wasn’t said about them, or women they like, so it doesn’t affect them.  For the women, I honestly don’t know.  I don’t get how you can vote for someone who very clearly doesn’t see you as a person, unless you’ve been so beaten down by abusive theology or just plain abuse that you don’t see yourself as a person either.

But to me, it’s personal.  I remember being out at a concert, right after the election and wondering if I was safe.  The rash of hate crimes and sexual assaults was going on, and I sure as hell didn’t feel safe.

When someone has hurt you deeply, and they can’t even conceptualize the idea that you could or should be hurt by what they did, what the hell do you do with that?  The civility police would tell me that I’m supposed to let it go, and be extra nice to them in order to convince them that maybe voting for a brazenly racist authoritarian is a bad thing to do, but there’s no way to communicate the extent of the badness when civility means pretending that everything is fine, and *of course* their guy can’t be a misogynist, because that means I think they’re misogynist, and they totally voted for a woman that one time.  (I literally had someone say to me that they don’t know whether they’ve ever voted for a woman or not, because gender is so completely irrelevant and they focus on *policy.*  Ri-ight.  I’m sure you couldn’t tell me the gender of your current senator or representatives, but you could totally explain their policies in depth.)

I’m tired of the idea that I should be nice to people who don’t view me as fully human.  But the thing that makes it hard is they’re convinced that they do, because they’ve turned politics into this abstraction that doesn’t matter in real life.