Disease names

It’s long past time to stop naming rare (or any) diseases after the people who discover them.

Naming chemicals and elements and other scientific discoveries makes sense… mostly. (Too many times where the people who did most of the work didn’t get any of the credit.)

But diseases aren’t just diseases. There are human beings attached to those diseases. Human beings who likely experienced years of suffering, misdiagnoses, incorrect treatments, possibly disbelief or being treated poorly, perhaps accused of malingering. Who knows how many people died without knowing what was wrong with them.

Give diseases accurate names.

We really don’t need any more Asperger’s syndromes.

Book: What We Don’t Talk About When We Talk About Fat, by Aubrey Gordon

This is less a book review and more of a (rare) blog post.

Some years ago, in the early 2000s, I had an epiphany. After countless attempts to starve myself thin, after countless doctor’s appointments where I was prescribed weight loss for everything from sinus infections to migraines to broken fingers, after countless unsolicited comments about my body from strangers and loved ones, after countless microaggressions and acts of hostility regarding my size, I had an epiphany.

I am fat. And that’s okay.

My epiphany came at a good time. I’d been starving myself and doing everything “they” say to do, and yet my weight wasn’t budging. The internet was booming, and there were neighborhoods of people dedicated to fat acceptance and fat liberation. They were part of or learned from groups like NOLOSE, ASDAH, and from fat elders. People just like me, who realized they were fat no matter how they tortured or stressed their bodies, their bodies were wise, their bodies knew best, and their bodies adapted. They stayed fat. Some got fatter. We all knew that our dignity and humanity should not be dependent on our ability to conform to a more socially acceptable size and shape.

By the late 2000s, fat acceptance had started being co-opted by “body positivity.” Body positivity was for thin, white, abled, cis-gendered women. Body positivity excluded the fattest among us. Body positivity was framed with “it’s not about being thin, it’s about being healthy.”

At a time when I was at my sickest, sick enough to be forced to quit a career I’d just begun, sick enough to spend more days in bed than out of it, sick enough to be congratulated on my illness-induced weight loss (while being simultaneously berated for continuing to be fat), I felt wholly excluded from this unrecognizable version of body acceptance. I wasn’t healthy or thin.

Today, fatness is demonized more than ever. While people are becoming more aware of other prejudices and slowly making efforts to mitigate them, anti-fat bias is on the rise. Let me reiterate: While small improvements in implicit biases like racism, sexism, and homophobia have been recorded, and while ableism and ageism have remained about the same, there has been a 40% increase in anti-fat bias.

Being fat has become a symbol of failure. Fat people embody sloth and gluttony and greed. We are drains on society. We are inconveniences. We are ugly.

Having visible adipose tissue now has a diagnostic code, because it’s existence now a disease, even in the absence of other markers of health. It’s on my every medical chart note, regardless of the reason for the visit that day. A group of professionals with a long history of being easily swayed by the shiny gifts and baubles from the pharmaceutical industry decided to pathologize an entire class of people (the majority of people alive right now) simply for how they look, regardless of actual measurable scientific markers of health. These professionals are using an utterly racist metric, which has no basis in fact or health, to dictate who is worthy of evidence-based healthcare. Regardless of the ample scientific evidence that it’s possible to be fat and healthy or thin and unhealthy, the American Medical Association has simply chosen to deny reality.

Relatedly, a study of autopsies of very fat people discovered that they had undiagnosed medical conditions, indicative of significant misdiagnoses and/or lack of access to adequate medical care.

This is the natural result of decades of fatphobia. Decades of healthcare workers being incapable of seeing past body size or shape. Decades of friends and neighbors being taught and believing that it is better to be dead than fat. People are willing to trade years off their life for the chance to be thin.

What We Don’t Talk About When We Talk About Fat is about all of these things, and so much more. It’s about the personal experiences of actual fat people. About how we are hated because of what we look like. About the magnitude of the oppression ingrained in ourselves, in our loved ones, in our culture.

alternatives to the web are inaccessible to average users

The internet is more than the world wide web. tech folks get this, but everyday users don’t need to know, and likely don’t care. (if you do care, you might want to read about gopher.)

There seems to be a bit of a resurgence of the “low-tech” internet. (“Low-tech” is such a silly misnomer… the amount of technology it takes to access and build the internet is extraordinary and massive, and it’s still really new tech in the grand scheme of human history.) Some call it a renaissance. The irony is that many people with vision impairments have been using this tech for a long time, and it’s sometimes the preferred option for people accessing the web via very slow connections.

I am intrigued by the resurgence of gopher, and the new kid on the block gemini.

However, these are still inaccessible to the average user. It’s hard to find resources to help people access these nifty things who don’t already have a tech background or who have ample free time to learn. Since most of them can’t be accessed with a simple web browser, unless you happen to know of some kind of interface, they will likely remain inaccessible to the average end user.

The reason things like Facebook and Twitter are so popular and things like the fediverse are not so popular among everyday people is the usability factor. Just about anyone can figure out how to use Facebook or Twitter, but trying to access the fediverse in any kind of meaningful way is going to be impossible unless you’re already extremely technologically inclined, or you’ve got someone willing to hold your hand through your first few days of learning the ropes.

Personally, when I first accessed the internet in the mid-1990s, I ate up everything I could find, but I never could’ve done it without help from fellow users. I knew next to nothing about computers (I didn’t grow up learning to program or building my own computers, like many of my tech savvy acquaintances), but AOL made it really easy to get online, and within minutes, I met people willing to take the time to walk me through my first telnet connections. From my first telnet connection, a whole new world opened up to me. But I would not have gotten anywhere if people hadn’t taken the time to walk me through the most basic fundamentals.

I just don’t see that kind of assistance online any more. I see people encouraging others to read the docs (which is much nicer than RTFM, I suppose), but I very rarely see anyone stopping what they’re doing to help someone get a leg up on an elusive technology. It’s interesting to me that as we’ve become more aware of things like neurodiversity and learning disabilities, we’ve become less willing to help each other out for a common technological goal or a common good.

I don’t see myself adopting gemini or embracing retro gopher. It takes a significant amount of privilege to have the time and ability to sit down and adopt a new internet technology for fun. It’s not a privilege I possess.

Bad covid science

Today a nurse tried to say “Damn China since the news has finally agreed it is a man-made virus from the Lab in Wuhan.” A quick search brought up Snopes’s take, and “all” the media outlets are right wing or known tabloids… hardly “all.”

I’ve had a lot of bad healthcare experiences in my life. It’s hard to trust any of them when you don’t know which ones are buying into this drivel.

It’a dangerous out there for patients.

I don’t do resolutions

But I think I’ve got some advice for myself in 2021:

  1. Put on my own oxygen mask before helping others with theirs.
  2. No one knows more about me than I do. Time to act like the expert I am.
  3. My story is worth telling.

things that are no more

i was trying to dig up an old post about my internet setup from when we first moved into the RV. I was using a “lollipop,” as part of a project I had worked on. Apparently the website for the project is now defunct, as tends to happen with projects that don’t go anywhere. I did find my original post about the technical aspects of my setup (where I also apparently learned Hugo once already, but I clearly forgot everything since it felt like new when I did it again most recently; but that’s okay because I moved GFRV over to WordPress ages ago)… not the post I’m looking for, but that’s okay. I haven’t used the Lollipop for over a year now anyway.

I also found where I posted here about Ginger’s passing. I understated my grief back then. Her death was heartbreaking. I miss her every day. She was the best kitty BFF a person could ask for. She was perfect in every way.

an update

It’s been awhile. I’ve given up on finding a job in tech. I am old, fat, disabled, and I don’t look good on tech companies’ websites. I’m okay with it.

I’m not sure what I’ll do with this blog… I don’t really have time or energy for blogging for fun, but I sometimes think about it.

Here is a bullet list:

  • Still working at same job, doing taxes. Still enjoying it. Can’t imagine that changing any time soon. I’m an IRS Annual Filing Season Program participant, and I’m working towards becoming an Enrolled Agent.
  • Still disabled and chronically ill. Worse in some ways, better in others. This and work are why I don’t really have time or energy for blogging.
  • I got an electric trike, so when I want to step away from the computer, I can tool around on that.
  • I sometimes blog at Gluten-Free RV to give updates to friends and family, although not as often as I’d like.
  • 2020 was an awful year, but I’m cautiously optimistic that I’ll survive it.
  • I taught myself Hugo to make a couple tiny websites for fun, but this particular tiny website is still running WordPress

what it’s like looking for tech jobs when you’re someone like me

almost every tech job posting ever:

“we’re committed to diversity in tech….

….we’re looking for someone with 5+ years of experience….

….in very specific technologies….

….which have historically been extremely exclusive and prejudiced….

…and consequently only cis white males have experience in these technologies….

….so we’re going to hire an experienced tech bro, because business needs are business needs.”

¯\_(ツ)_/¯

new link blog format/location

a note for the four or five (or maybe zero or one) people who read this blog..

since i’m mostly posting links lately, and i’d really like to be able to tag and retrieve links at a later date, i decided to do a little upgrading:

i’ve installed Shaarli, a single-user bookmark organizing app, on my site here as my new Link Blog.

it has things like…

I tweaked the color scheme and added a few things to the layout (mostly to fix some editing and to add a link back to my main site), and maybe i’ll even submit a pull request when i clean up the code.

on a personal note (and I’m writing this here because the blog link is officially removed from my portfolio, even if it still exists for those who go looking for it), i’ve given up on tech work for now and maybe forever. i have a part-time job that’s going well, although it’s not very technical (though I did get to teach myself how to script in windows powershell in order to Get Some Shit Done, because i didn’t want to do it the old fashioned way). these people appreciate the work i do, they’re flexible when i need flexibility, and this seems to be turning into a long-term opportunity. it would be nice to have benefits and a steady paycheck, but in this gig economy, i’m just grateful i have a permanent, if irregular, job.

i’ll use this site/host for play for now (Shaarli was a good experiment tbh), and i’ll probably update the portfolio/resume/cv at some point in the near future… and it sure would be nice to get some fun wordpress gigs someday, but for right now?

for right now i’m going to focus less on trying to get into an industry that doesn’t want me, and focus a lot more on survival and self-care.

Purism’s bigotry problem

Purism has created its own fork of Mastodon, but has removed the ability to report posts, and has basically taken a pro-bigotry stance by not condoning some pretty basic anti-bigotry concepts.

It turns out they’re going to be blatantly allowing hate speech on their servers, as long as they don’t harass individuals, whatever that means. See this Pleroma post with screenshots.

The author of the post, Chris, says he had a phone call with one of the execs at Purism today, so maybe things will change.

But it never should’ve gotten to the point of having to blow up on social media in order to be heard.

Taking an anti-hate-speech stance and spelling that out in obvious ways (like the Contributor Covenant) should not be so difficult. Expecting an organization to say “racism/sexism/ableism/sizeism/all forms of bigotry are not tolerated here” should NEVER be controversial.

Sadly, this is not limited to Purism, but I do think it’s a smidge bit extra hypocritical for a company to be all about liberty and that brags about creating a safe workplace.

Tech has a very long way to go.