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: 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.

Book: China Rx by Rosemary Gibson and Janardan Prasad Singh

Before I got sick, I worked in pharma. I had a great pharma internship as an undergrad and I felt like I’d found my niche. I enjoyed analytical chemistry and I had a real knack for anything medical. I worked in the industry for a couple years, then took an analytical chemist position in another industry mainly because I wanted to move closer to my future spouse. I missed pharma and tried interviewing for positions closer to my new home, with no luck. (Probably for the best: the best prospect was at a brand new state-of-the-art research and development facility, which laid everyone off and shut down 6 months later.)

Once started treating celiac disease and adopting a mobility device for a failing back, I was ready and able to go back to work. But no one wants to hire a chemist who’s been out of the industry for nearly a decade. And by then, many of the jobs had moved overseas.

So this book was personally relevant.

China Rx describes the long game played by the Chinese government to become the only supplier of necessary items, including medications and supplements. Since the US government (and its corporations) is far more concerned with this quarter or this election term, it puts the Chinese government in a far better strategic position to achieve its long-term goals.

The US used to make its own antibiotics, vitamin C, and other drugs and drug products. Nowadays, much of the manufacturing of critical raw materials happens in China, because it’s cheaper. Drug companies want to maximize profits, which means purchasing raw materials at the lowest possible cost.

The book describes the heparin horror story when tainted heparin (a blood thinner used regularly in hospitals as standard practice to prevent blood clots, and which, incidentally, is a meat industry byproduct produced from the entrails of slaughtered pigs) sickened and killed many people. When the problem was identified, the FDA did not rush to act because recalling the US heparin supply would’ve caused a national shortage. It’s better to have potentially tainted heparin than no heparin at all.

The book also describes incidents in which Chinese companies prohibited from exporting to the US would use a different company’s label to circumvent bans and export to the US. These companies are partially owned by the state (Chinese government), so it seems more reasonable to assume this is a strategic governmental move, not unscrupulous business owners (although that happens, too).

One of the reasons China can manufacture so cheaply is its lax environmental regulations. For example, making antibiotics is a dirty job. It stinks, there are waste products, and an impact on the local environment. (Soil, air, water.) Rather than spending the money in the US to innovate a cleaner, safer manufacturing process, they outsource the same old ways to a region whose government doesn’t worry about it (to the detriment of its citizens).

The book discusses lax and loosening trade regulations that resulted from supply chain issues. The US military now relies on China for critical medications and medical devices. The US used to manufacture its own penicillin in wartime, but now it relies on China for the only treatments available for anthrax.

The FDA really has very little control over what comes in from overseas, and not much control over what happens in the US either. Recalls are voluntary. Testing is rare. The FDA lacks the manpower, authority, and budget to effect much change. And the revolving door between pharma and the FDA means that few people want to speak out. (Not to mention the overt censorship happening.)

Chances are, most of your medications and vitamins were manufactured in China. If not the entire product, then critical components like the active ingredient and/or the inactive ingredients responsible for extended release dosing. But labeling rules make it very difficult to figure out where your medicines are made. If you’re curious: you can call the manufacturer directly, and sometimes you can find the info on DailyMed or drugs.com.

It was interesting (if depressing) reading about places I’ve physically worked (and learning that some of those places no longer exist), and seeing what happened after I got sick. I know now that it wasn’t solely a long illness that prevented me from reentering the industry, but also many, many changes far beyond my control.

Costco’s wayward catalogues

We keep getting Costco weekly specials to a PO Box we don’t use much… never mind that we aren’t shopping at Costco (Life Pro Tip: we have a membership only to access their reasonably priced Delta Dental plans), but also we don’t want wasted paper and space in our tiny post office box.

I suggested my partner find a phone number on the catalogue to call, to get us off the mailing list. After waiting on hold for 30 minutes, he finally got a human, who insisted she couldn’t talk to anyone but me because my name was on the account. (Never mind that I know my partner is an administrator of the account too.)

I’m in the middle of a busy work day. He passed me the phone and I quickly rattled off our addresses and my birthdate to “verify” who I am. (Never mind that the address is on the envelope, and my DOB is public record nowadays…) She offers to make my spouse an administrator so he can handle this BS, I thanked her and handed him back the phone.

He’s explaining that we don’t want paper mailings at any address on file, and the rep is insisting that we opted out of paper already, but cannot explain why we are looking at a brand new mailing received this week. No offers to ask someone higher up, just the suggestion it might be because we purchased goods from Costco.com (we haven’t, and never mind that her phone number is the one on the catalogue to opt-out)… so nothing was resolved.

Talk about bullshit jobs…

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.

The messy world of supplements

A delayed celiac diagnosis means I struggle with adequate nutrition. I’m still combatting a lifetime of unabsorbed nutrients. It’s exhausting.

I have to rely on supplements in some cases, and supplements are the Wild West of the nutrition world. Little regulation goes into them, and it’s entirely possible that vitamin bottle doesn’t contain any vitamins at all, and the only way you’ll ever know is if someone tests it, or if it contains something risky and someone gets hurt.

I am allergic to lanolin, which is used to produce the majority of vitamin D3 supplements. D3 seems to be better absorbed by most people (especially those with gut problems) compared to non-lanolin derived D2. I took massive doses of D2 for months with no impact on my single-digit levels. I managed lanolin-derived D3 for awhile, but eventually the allergy symptoms got too severe. In the last several years, a vegetarian source of D3 has been discovered (lichen), which works well enough.

A new bottle of D3 I recently purchased caused me a lanolin-like reaction. I decided to write the company, because it seemed like the wrong D was in the bottle. I emailed the company with the lot number, explained the situation, and hoped they’d look into it.

They contract with a 3rd party QA service, which asked me to call them on the phone. I talk on the phone a lot for work and I’m exhausted. I asked if they would work by email. The email bounced back and there is no way to get a hold of them without calling on the phone.

I emailed the manufacturer again and explained I am tired and disabled. I’m happy to help you with this free labor, but please let me do it by email. They said they would.

I never heard back from them, and today I got an email reply, weeks later, claiming I gave them an invalid lot number so the case was being closed. I checked my sent mail, and the lot number they’re working on is different than the one in my original email.

Seems like working by email should prevent this, because everything is in writing, but the communication still got all bungled up.

I replied with the correct lot number, but who knows what’ll happen.

No one even offered a coupon for the two brand new bottles of D3, which are medically necessary but unsafe to take.

Celiac + allergies under capitalism is a dangerous existence.

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.

what to do now?

do i blog again? do i give up on any kind of public voice? i honestly have no idea. maybe let’s try again.

i’ve been seeing people touting the miracle that is oat milk, framed as an alternative to almond milk, which is currently being demonized for the perceived amount of resources required. however, almonds are still better than animal-based dairy, and subsidies are never factored into these calculations. Not only that, but almonds themselves grow on trees that don’t need replanting year after year, which is better for the air quality for local workers and residents, compared to fields replanted each season (and that’s not even addressing the less ethical practices of field burning as a means of turning it over for a new crop).

anyway… i wish that the oat bandwagon wasn’t shitting on people with celiac and wheat allergy. seems like the vast majority of gluten-free fad dieters are totes cool with oating the hell out of their lives, and since companies only care about selling product, they sure as shit don’t care about oat contamination for the small minority of the GF market who has to be GF for medical reasons.

yet another way the world isn’t made for people like me.