disability

How to break up with your phone.

I’ve been reading the book by the same name and making a lot of changes recently. I spend too much time on devices without actually accomplishing much.

I’ve recently unsubscribed from just about all emails… which is something I like to do whenever there’s a big holiday anyway (looking at you, Black Friday) but I gave a lot of things a pass just because they weren’t trying to sell me something. But if it’s taking up my time (or taking up space in my inbox) and not giving me anything in return, it’s time for it to go.

I’ve also gone through my contacts list and deleted every entry that I don’t need. I had a lot of contacts for people who’ve never stayed in touch or don’t have my current number. Including stuff I really didn’t need like past doctors or campgrounds we’ve stayed at and don’t plan to revisit.

I set up my Home Screen so it makes me happy when I see it, but I don’t need to be on it all the time. I’ve put apps that distract me (like WordPress) into a folder called “Are you sure?”

I deleted a ton of apps. I thought I was pretty frugal about apps I have in my phone, but there was plenty I didn’t need. The advice is “you can always delete later.” But as a nomad with cellular internet and very little patience, unless the app is very tiny, I am unlikely to download it again later. So Star Walk stays, but TikTok goes.

I may delete this blog or the whole site, and put up a placeholder. The reality is, I’m not coding anything any more. Even if I decide to work in tech someday (unlikely), I won’t be coding. I certainly like to tinker with WordPress themes for the sites I continue to maintain, and I love automating Shortcuts for my iDevice, but I’m done trying to get into tech professionally. At this point, this domain is less of a declaration of what I am or what I do, and more of a description of a prior phase in my life. I created it because it made me smile, but now it feels more like a chore.

I want to go back to using devices for fun and as useful personal tools. I’m tired of being at the mercy of my devices. I’m tired of devices that are designed to be addicting. And I’m tired of my devices stressing me out and making me feel badly about myself.

The friend who recommended this book is the same (and only) friend I knew who wouldn’t whip out his phone when hanging out with friends in the early days of cell phones. He didn’t understand why people couldn’t avoid their device for one meal friends. And, 20 years later, he was totally right.

We should be conscientious of the fine line here… for those of us who are disabled and unable to hang out with people offline (and in this post-covid world, that’s a lot more of us than it used to be), devices are a lifeline. They are how we socialize, work, and shop for groceries. But my devices felt more like constant reminders of my shortcomings, rather than empowering connections to my community.

I don’t know what all of this means in the long term. But for now, I’m enjoying a less cluttered digital life.

EDIT: I need to add a content warning for this book. It advocates disordered eating and equates intermittent fasting with intermittently putting your phone away for a period. This is dangerous and irresponsible. I ignored a lot of the book’s ableism but disordered eating is irresponsible and piss poor writing.

Like all “self-help” books, take this one with a big shaker of salt. Take what you need and discard the rest without a second thought.

Reasonable accommodations and covid-19

When I was first attempting to get a tech job, I thought of job hunting as my full-time job. I threw myself into it… and got nowhere.

I am disabled and I need reasonable accommodations. Here are the things I need in order to be successful at work:

  • Remote work
  • Flexible work hours

That’s it. That’s the list.

These things are advertised by many companies as standard “perks” of working there. These companies typically don’t hire anyone without many many years of experience, or they only offer remote work and flexible schedules to people who have the most seniority with the company.

And then… covid happened.

Suddenly, employers bent over backwards to accommodate remote work for all. Seemingly overnight, companies were embracing working from home. Companies that claimed they couldn’t let anyone work from home because it would interfere with company “culture” were switching to a fully remote model without a significant (or any) impact on productivity. Suddenly, workers without enough seniority to work from home were able to work from home like their more senior colleagues.

Suddenly, Zoom meetings were the norm, and the ability to work around “Zoom school.”

Suddenly, positions that employers insisted could not be done remote (despite only requiring a computer and internet connection) were made remote.

As if by magic.

Not only did this become no big deal, but the change was instant, without giving workers any grief about it, or requiring proof of their needs.

Disabled people everywhere witnessed this.

Disabled people, who have the highest unemployment rate of any minority group (and whose oppression intersects with many other identities which are also more likely to experience high rates of unemployment), watched companies to everything in their power to help abled workers continue to work and be productive.

Now, as workers are starting to return to their office environments (too soon, if you ask me, but that’s another post for another time), disabled people see that too. We see that as quick as it was to switch to a remote model and become an accessible workplace, we see companies throwing it away, in a race to reinstate the status quo.

Book: Wheat Belly by William Davis

Here is a book that I could not read, because it was so focused on the OMG! OBESITY! PANIC!, that it was hard to find any usable info.

I suppose I should’ve expected that with a title like Wheat Belly, but it’d been long recommended by people in the celiac disease community as the “a-ha!” guide to making sense of the hundreds of seemingly unrelated symptoms of celiac disease. But these authors brought everything back to fatness and weight, as glutenfreedom as the cure, and that being fat is icky.

They say glutenous, they mean gluttonous.

Anyway, I skimmed the whole book and couldn’t find a single page that didn’t loop back to anti-fatness.

I was hoping for a book about the history of wheat and how that impacts the body, but this book ain’t it.

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.

Supplements… again.

Turmeric has been found to be helpful with some types of pain and inflammation. My doctor recommended a supplement that combines turmeric with fenugreek, because apparently this combination is better than turmeric alone.

She recommended Turmeric Forte, which is manufactured by Mediherb in Australia, but the only company who can sell it is Standard Process in the US. Trying to find information about gluten-status is… difficult.

I left two messages in December for a callback from QA, and no one called. I called again this month to try again. I got more info, but it wasn’t good info.

Is Turmeric Forte gluten-free?

Mediherb manufactures their capsules in a gluten-free facility, and they test every batch for the presence of gluten down to 5ppm, which is outstanding. That alone is very safe for me and nearly anyone with celiac.

But then those capsules are shipped in bulk to Standard Process, who then takes this nearly pristine gluten-free product, and bottles it on the same equipment that they use to bottle all their oat- and gluten-containing supplements.

But Standard Process tests their products for gluten, right?

Nope.

They don’t test their bottled lots and they don’t test the equipment after cleaning to confirm the cleaning was effective.

When I spoke with their QA person, they had nothing to say. They seemed unconcerned that they could be adding gluten to a GF product.

Products like that aren’t for people like me.

But it blows my mind that I have always had such a hard time finding work while companies are totally okay with sloppy QA or sloppy IT. I don’t get it.

Anyway… The history of Standard Process is shady as heck.

Gluten-Free-ish Oreos

Nabisco has been talking up their new GF Oreos since last year, even though they wouldn’t be released until this week.

They’ve been pretty tight-lipped about it, officially. There were pretty social media posts with a classic Oreo, and a few words about them being gluten-free. But no details: what ingredients would they be using? Would they be dairy-free, egg-free, and vegan like the original? Is there a new dedicated GF facility for GF Oreos? There was nothing on Nabisco’s websites.

Well now they’re in stores, but nothing’s changed. GF Oreos are still not on the company’s websites. I tried to find an ingredients list, but the closest I could find was an MLive article talking about trying them.

They’ve got rice flour (not surprising) and… oat flour.

I don’t think oat flour is safe for celiacs. Maybe some can eat them without symptoms, but I am unconvinced silent damage isn’t happening. My reactions to GF oats are so severe, just as severe as consuming gluten grains, that I may as well be eating wheat.

If nabisco cared about the celiac demographic, they wouldn’t have used oats. Oats are a lazy way to make food that can be labeled GF. GF oats are easy to acquire now, and GF labeling rules are lax. So instead of making something that’ll be enjoyable by the largest number of people, they go for the largest marketing gimmick and the fad dieter demographic.

I don’t really miss Oreos, but I miss convenience and normalcy and the fun of sharing a treat with someone. I don’t even want to give money to companies like Nabisco. It’s not like I’d be making Oreos a regular part of my diet, or anything more than a rare treat.

But gimmicks like these just make me feel more excluded from the modern world.

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)_/¯

Links

The Ethics of Web Performance: a compelling discussion about the modern web’s impact on accessibility and the environment.

Nefarious LinkedIn: It turns out that LinkedIn scans’ users browsers for extension usage. Why is that? Why encrypt and bury the information it finds? I don’t know the answers, but this plugin will help you detect what LinkedIn is looking for.

The Norwegian Art of the Packed Lunch: while a traditional Norwegian lunch of bread with cheese or meat is completely off limits for me as someone with celiac disease and food allergies, the concept of eating the same simple lunch every day on a set schedule as a means of alleviating decision fatigue is very appealing.

Tennessee doctors are paid to review applications to the federal disability program. How much they earn depends on how fast they work. Some doctors work very fast. Highlighting the corruption and flaws with the disability system… Tennessee is not unique, but The Tennessean did a hell of a job investigating that state and the harm it’s caused to disabled people who need benefits.

Stop The Rock Stacking: There’s a recent trend for tourists to stack rocks randomly in nature, which is disrespectful and can be downright harmful to nature. Stop it. Visit Aruba also explains why rock stacking is harmful.

I Was Pregnant and in Crisis. All the Doctors and Nurses Saw Was an Incompetent Black Woman: “What I remember most about the whole ordeal, groggy from trauma and pain and narcotics, is how nothing about who I was in any other context mattered to the assumptions of my incompetence. I spoke in the way one might expect of someone with a lot of formal education. I had health insurance. I was married. All of my status characteristics screamed ‘competent,’ but nothing could shut down what my blackness screams when I walk into the room.”

Lollipops and Hugo

I appreciated this more formal recognition of my Lollipop contributions to date. Working with Kemonine has been a real “treat” (sorry not sorry), and we are making so much progress! I’ve got myself a little Orange Pi running as a router and data-cap-saver thanks to Pi-Hole.

Note (and an opinion) about data caps and advertisements: unlimited data plans are great, but they’re not quite as unlimited as they appear on the surface: see this post about unlimited data from the experts at the Mobile Internet Resource Center. Many sites and individuals rely on ads for revenue, but ads can be hogs, and are exceptionally annoying if not downright harmful: such as when they trigger migraines, trauma flashbacks, or other health problems. It might seem extreme to sent up an entire device specifically to avoid ads, but for today’s internet, I think of it as an accessibility tool. And I hope that someday we won’t need it, because advertisers will shift towards more ethical practices.

In other interesting news, I learned how to deploy a Hugo site: Gluten-Free RV. Hugo’s really nice. (jmf.codes may be switching over someday in the near future…)

#100DaysofCode Day 11

I took the previous day‘s code for the Morse Translator and changed it to include list comprehension.

Through a series of unfortunate events, I had an unexpected allergic reaction two days in a row. One reaction often throws me for a loop for a day or two, requiring extra rest, but two in a row have left me feeling pretty wiped. It can take a short minute to get back in the swing of things when something like this happens (I partly blame the Benadryl hangover). This is one of life’s minor annoyances when living with chronic illness or disability. Some annoyances are bigger than others, of course. This could’ve been much worse, all things considered.