Iron and cheese: how I used lactoferrin to treat iron overload

This is a three-part series about how getting mysterious black spots on my teeth helped me find out I had an iron disorder, and how I found and tested a novel treatment for it. Parts 2 and 3 will be published shortly.

Disclaimer: This is not medical advice. Talk to your doctor before making medical decisions.

The mystery of the black tooth spots

A close-up of a smile, with four large black ovals obviously edited in over the teeth
My black teeth spots (simulated)

My first clue that I had too much iron in my body was a complete surprise. I was brushing my teeth in front of the bathroom mirror one morning when I suddenly noticed a huge black spot on my tooth! As I looked closer, I realized I had SEVERAL huge black spots on my teeth which had not been there the month before. I made an emergency appointment with my dentist, who reassured me that the spots weren’t cavities at all, just harmless stains probably caused by changes in my medication or diet.

Cheese + iron = black tooth spots

I’d recently started taking a supplement called lactoferrin, so I typed “lactoferrin black spot teeth” into my phone on the way home from the dentist. Literally the first search result was a letter in the journal of Medical Hypotheses by Ilir Mesonjesi, an Albanian dentist.

A wedge of Swiss cheese
Cheese + high free iron = black tooth spots!

His hypothesis was simple: if someone has high levels of free iron in their body, and they eat a lot of cheese, the lactoferrin in the cheese will bind to the excess iron in their saliva and stick to their teeth, creating black spots. He suggested that if dental patients show up with big black spots on their teeth (like me), they probably have one of two causes of high levels of free iron: iron deficient anemia or something called iron overload.

Great, now I had a likely cause for the giant black spots on my teeth: high free iron in combination with a recent increase in lactoferrin. I don’t eat any dairy or cheese (the usual source of lactoferrin), so it would make sense that my black spots only showed up after I started taking a lactoferrin supplement. I stopped taking lactoferrin and brushed my teeth with baking soda to get rid of the black spots.

But why did I have high free iron in the first place? My symptoms didn’t match iron deficient anemia, so I started looking into iron overload.

Iron is a dangerous poison

Yellow triangular sign with a black skull
Iron is a deadly poison

You’re probably used to thinking of iron as vital to human life, and it is! Without iron, we can’t move oxygen around our bodies and we would instantly suffocate. But iron is also a deadly poison. Free iron reacts with hydrogen peroxide (found in every cell because it is a byproduct of cellular respiration) to create highly destructive free radicals that kill cells. Iron is so poisonous that swallowing only a few grams of iron supplements can kill a person! Despite its toxicity, acute iron poisoning is extremely rare; after the FDA changed packaging requirements for iron supplements in 1997, iron poisoning is now almost non-existent in the U.S.

Our bodies deal with this double bind—needing a deadly poison to survive—by binding iron with special proteins that stop it from reacting with other molecules in dangerous ways. It also limits how much iron it absorbs from food in the intestines: if the body already has enough iron, it turns off iron absorption. If the body needs more iron, it turns on iron absorption, and hopes you eat some food with iron in it soon. (This doesn’t always work, which is why anemia is so common.)

Iron overload can kill

Sometimes genetic mutations cause the “absorb iron” switch to stay stuck on, all the time. In that case, if a person ingests enough iron, their body slowly accumulates more iron than it can safely store. After many years, the body contains so much iron that it can’t store it safely, and the iron begins damaging the body and will eventually kill it. This condition is called iron overload.

The symptoms of iron overload are maddeningly vague and non-specific. They include (in rough order of when they start):

  • Fatigue
  • Joint pain
  • Impotence, infertility, amenorrhea, and other signs of low sex hormones
  • Low thyroid levels and associated symptoms
  • Hypopituitarism (this is a grab bag of seemingly unrelated symptoms)
  • Liver failure
  • Heart problems
  • Diabetes
  • Grey or bronze patches of skin
  • The “iron fist” pattern of joint enlargement in the hand
A drawing of heart, liver, pancreas, and brain showing damaged spots
Stored iron begins to damage organs

The symptoms are so varied because excess iron affects nearly every system in the body. The body copes with excess iron in the bloodstream by binding it to storage proteins and shoving it into various organs and tissues: mostly the liver, but also the heart, pancreas, glands, brain, joints, and skin. Too much stored iron causes tissue damage and scarring. These organs and tissues slowly start to fail as healthy tissue is replaced with scarred, nonfunctional tissue. Eventually, the organ damage causes death.

Iron overload is hard to diagnose

Iron overload is hard to diagnose in part because its early symptoms are shared with many other diseases, such as hypothyroidism, rheumatoid arthritis, or hypermobile Ehlers-Danlos Syndrome (hEDS), which I happen to also have. For example, I’ve had fatigue and joint pain since I was 10 years old, which I thought were caused entirely by hEDS. But looking back, I noticed that my fatigue got better when I started taking lactoferrin, and got worse when I stopped the lactoferrin. Without the black tooth spots, I would never have suspected iron overload was contributing to my overall fatigue.

Iron overload is easy to diagnose when someone develops the “classic tetrad” of iron overload symptoms—skin bronzing, diabetes, liver failure, and heart failure. But the presence of these symptoms means they’ve already suffered severe, irreversible damage to the pancreas, liver, and heart.

The internet is filled with stories about loved ones who suffered for years before being diagnosed and/or died of iron overload after doctors missed the early symptoms. Studies show most doctors don’t understand how to diagnose or treat iron overload, leading to an average delay of 10 years in diagnosis after the first symptoms in one study. Ten years is a long time to feel sick and not know why! The “iron fist” pattern of joint problems in the hand is the only symptom unique to iron overload, but it usually only shows up in advanced iron overload, and is hard to distinguish from general joint pain.

Causes of iron overload

Most cases of iron overload are caused by the situation we described earlier, where the “absorb iron from food” switch stays stuck in the on position at all times, which we will explain more in the next section. The other cause of iron overload is acquired hemochromatosis, when a person is massively overexposed to iron through ingesting high iron foods or multiple blood transfusions. For example, one 78-year-old woman developed iron overload after taking a hefty iron supplement every day for 30 years after menopause. A 52-year-old woman with sickle cell anemia developed iron overload after decades of blood transfusions. In a even rarer case, a 19-year-old burn victim needed so many blood transfusions that he developed iron overload after only a few months of transfusions. Most iron overload cases are not caused by acquired hemochromatosis.

Hereditary hemochromatosis

Hereditary hemochromatosis (HH) is caused by a collection of genetic disorders that causes the body to absorb iron from food even when it has too much iron already, and is far more common than acquired hemochromatosis. If a person with HH absorbs more iron than they lose, they eventually develop iron overload. How much iron is that? Well, the average U.S. adult eats around 20 mg of iron a day, and only loses a miniscule 1-1.5 mg of iron per day through shedding of dead cells, crying, spitting, etc. Not all of the iron we eat is absorbed, but most people can absorb more iron than they lose while on an average iron diet. So as long as someone with HH is not losing iron in some other way, they will gradually accumulate iron.

An illumination from a medieval text showing a doctor cutting a patient's arm and letting the blood fall into a bowl
Medieval blood-letting illumination

If too much iron is so dangerous, why don’t our bodies just get rid of the iron? It turns out that the only “natural” methods for our bodies to get rid of enough extra iron to reverse HH are menstruation and pregnancies, which only some people can do and which are hard to control.

There’s one other method of losing iron: bleeding. That’s why HH is one of the few diseases that is best treated by the ancient and formerly quite popular medical practice of blood-letting (now called “therapeutic phlebotomy” in Western medicine). Today, blood-letting is still the first-line treatment for HH and a few other diseases.

HFE hereditary hemochromatosis

The best-known form of hereditary hemochromatosis, HFE hereditary hemochromatosis (HFE HH), is caused by mutations in the HFE gene, which regulates iron uptake from the intestines. Scientists are currently arguing about whether the most common HFE mutation originated in what is now modern-day Ireland, where 1 in 5 people are carriers of some HFE mutation, or in a Viking population, or in several places in Northern Europe at once. In populations of northern European descent, HFE HH is currently thought to be the most common genetic disease caused by a single gene, with in 1 in 200 people with the genes for HFE HH.

Non-HFE hereditary hemochromatosis

Hereditary hemochromatosis is even more common in some other racial groups: one study of a racially diverse population found that people of Pacific Island and Asian descent had a much higher rate of iron overload than white people, while Black people had nearly as high a rate of iron overload as white people. African iron overload is one form of iron overload found primarily in people of sub-Saharan African descent. It was originally thought to be caused by drinking beer brewed in iron barrels, but only some people who drank the high-iron content beer developed it. It is probably caused by a mutation in the ferroportin gene. Many other forms of iron overload have yet to be characterized. In summary, iron overload caused by HH is widespread among many different racial groups.

Why is hereditary hemochromatosis so common?

Why is HH so common? It’s easy to imagine ways in which people who could store more iron would have an advantage over people who didn’t. Maybe they could have lots of pregnancies without becoming anemic! Maybe they could recover quickly from stabbing each other with spears! Maybe they could lose a lot of blood in childbirth and be back out feeding the pigs next week! Maybe they kept growing during the famine years when everyone survived on rice or potatoes! One study found that people with HFE HH are on average 1-2 inches taller than people without, possibly because they never ran out of iron while they were growing.

Picture of baby feet with a copper anklet
This baby removed about 250 mg of iron from their birth parent! CC BY Vinoth Chandar

At the same time, the disadvantages of HH don’t usually appear until late in life (with the exception of some rarer forms of HH that affect children and infants). It usually takes decades for people with HH to absorb enough iron to start having symptoms, and menstruating people take even longer to show signs because menstruation (and pregnancy) lowers body iron stores. Many menstruating people with HH never accumulate enough iron to be symptomatic before they die of old age-related causes. Even people with HH who don’t menstruate often don’t develop symptoms until after age 40, especially if they donate blood regularly or otherwise lose significant amounts of blood.

In short, HH seems to make people healthier and stronger when they are young, and only sometimes makes them sick when they get older—a pretty good deal most of the time, especially in populations where people died sooner.

Genetic tests for hereditary hemochromatosis

All this was very interesting, but what did it mean for me and my black tooth spots? Dr. Mesonjesi suggested the spots were caused by high levels of free iron in my blood, caused either by anemia or iron overload, in combination with lactoferrin. As someone of northern European descent who has never had anemia or taken iron supplements, I now suspected that I had iron overload caused by HFE hereditary hemochromatosis.

Suddenly, I remembered reading something about hemochromatosis in my genetic diseases report from 23andMe several years ago. I wondered, did 23andMe tell me that I had “the hemochromatosis gene” and I just… forgot?

To be continued…

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Choosing which consulting services to offer

Many consultants (including me) make a similar mistake: we offer too many services, in too many areas, with too many options. After running one mediocre consulting business, and one successful consulting business, I’ve learned to focus on services that:

  • Require hard-to-find expertise
  • Deliver far more value to the client than they cost me to provide
  • Cost me a fairly predictable amount of time and money

In practice, for a one-person consultancy, this often means offering the same service repeatedly, with only slight customization per client. The price of the service should be based on the value the client receives, not on the per-delivery cost to yourself.

I’m far from the first person to articulate these principles, but I had a hard time putting them into practice. In this post, I’ll give two concrete examples from my businesses, one in which I did not follow these principles, and one in which I did, and one example from a colleague’s successful business. Hopefully, other folks starting consultancies won’t have to start and throw away an entire business to learn them.

My first mediocre consulting business

My first consulting business offered software engineering related services in the areas of Linux and file systems. The software consulting business did okay – I made a decent living, but it was stressful because the income was unpredictable and irregular. I put over ten thousand dollars on my credit cards more than once, waiting for a check that was 60 or 90 days late. Most of my clients were happy with my work, but more clients than I liked were disappointed with the value I gave them.

My most successful contracts were for debugging critical Linux file system problems blocking shipping of products, where I could offer rare expertise that had high value to the client. Unfortunately, I could not predict how long each of these debugging sessions would take, so I didn’t feel confident pricing based on value to the client and instead charged an hourly rate. Payment was usually on time, due to the high gratitude of the client for me rescuing their income stream. These contracts are what made my business viable, but because I didn’t price my services based on the value provided to my client, they didn’t pay as much as they should have, and I had to take on other work outside that area of expertise.

My other contracts ranged from reviewing file systems related patents to developing user-level software libraries. Most of these contracts were also priced on an hourly basis, because I could not predict how much work they would take. With the one contract I priced at a fixed project cost, we underspecified the product, and the client and I argued over what features the final product should include. The client also had a variety of unusual software engineering practices that made development more time-consuming than I had expected. No surprise: software development is notoriously unpredictable.

A colleague’s successful consulting business

In retrospect, I realized that my expectations of success in software consulting were based on my observation of a colleague’s software consulting business that did follow the principles I outlined above. His business started out after he ported Linux to a CPU architecture which was in widespread use in embedded systems. At the time, operating systems for these embedded systems often cost many tens of thousands of dollars per system per year in licensing fees—sometimes costing millions of dollars per year to the vendor. From the vendor’s perspective, paying, say, $50,000 for an initial port to Linux represented enormous savings in software licensing costs.

On my colleague’s side, porting Linux to another embedded system with this CPU usually only took a few days of work because it was so similar to the porting work he had already done. Once he received a request to port Linux to a new system and completed the port before he sent back his bid for the contract. In short order, he had more money than he knew what to do with.

To recap, my colleague’s successful software business involved:

  • His unique experience porting Linux to embedded systems using this CPU
  • Delivering millions of dollars of value in return for tens of thousands of dollars of costs
  • Slight variations of the same activity (porting Linux to similar systems)

Despite having a similar level of valuable, world-unique expertise, I was unable to create a sustainable software consulting business because I took on contracts outside my main area of expertise, I priced my services based on the cost to me rather than the value to the client, and the cost of providing that service was highly unpredictable.

My second successful consulting business

When I started my diversity and inclusion consulting business, I wanted to focus on teaching the Ally Skills Workshop, but I also offered services based on my other areas of expertise: code of conduct consulting and unconference organization. The Ally Skills Workshop, as a lightly customized 3-hour class, was a fixed price per workshop, but the other two services were priced hourly. During my first year, I had significant income from all three of these services. But when I sat down with the accounts, I realized that the Ally Skills Workshop was both more fun for me to deliver and paid better per hour than my other services.

Thinking about why the Ally Skills Workshop paid more for less work made me realize that it was:

  • Priced based on the value delivered to the client, not on the cost to me
  • Customized per client but mostly the same each time I delivered it
  • In demand by clients that could afford to pay for the value it delivered

While all three of my services were in demand because I had unique expertise, only the Ally Skills Workshop had the potential to get me out of an hourly wage grind and give me the freedom to develop new products or write what I learned and share it with others.

With that realization, I started referring my code of conduct and unconference consulting clients to people who did want that work, and focused on the Ally Skills Workshop. With the time that freed up, I wrote an entire book about enforcing codes of conduct and gave it away (this is not a good business decision, do not do this).

Elements of a successful consulting business

In summary, a successful one-person consulting business will probably focus on one or two products that:

  • Require expertise rarely found in your clients’ employees
  • Deliver far more value to the client than they cost you to provide
  • Cost you a fairly predictable amount of time and money

It may feel safer to offer a range of services, so that if one service becomes unpopular, you can fill in the gaps with another one, but in practice, it’s hard for one person to do several things well enough to make a significant profit. In my experience, it’s better to do one thing extremely well, and use my free time to understand how the market is evolving and develop my next product.

Repost: How calls for “civility” are harming tech companies

This article originally appeared on Project Include’s blog on July 9, 2018 and is republished here by permission.

As a 20-year veteran of the tech industry, I’m familiar with calls for “civility” in discourse — and the harm they often do to diversity and inclusion. Just last week, game developer Jessica Price, prompted by a man explaining a basic concept of game design to her, described a well-documented pattern of bias facing women professionals: amateur men assuming she is incompetent and telling her how to do her job, then expecting a polite and caring response. Rather than supporting Price, her employer fired her for not being “open” and “polite” enough — an example of the exact form of gender bias she was describing.

In my experience, calls for “civility” in tech companies are most common in response to an employee objecting to bias against a marginalized group. For example, a Google employee was formally reprimanded by HR for describing another employee’s comment as “unequivocally racist,” a Linux developer was criticized for using profanity while calling for an end to verbal abuse in the community, and a Yelp customer service employee was fired after she wrote an impassioned blog post asking Yelp to pay her a living wage.

Management is often ill-equipped to handle these kinds of conflicts. The initial problem — an incident of bias against a marginalized group — may be so common and normalized as to seem acceptable to many people. But the objection to the bias seems easier to identify as wrong: You called someone racist! You used a cuss word! You wrote an angry blog post! And that’s how you end up in a situation where a game development company in a field desperate to increase its representation of women ends up firing a woman game developer for fighting bias against women.

How can you avoid this self-defeating pattern of valuing civility and politeness above fighting the bias and discrimination that is measurably harming your company?

1. Put the value of civility into context. Civility is only one of many competing values in a company culture. When you catch an employee embezzling company funds, do you worry about offending them by cutting off their access to the company bank account? When an employee is underperforming, do you say nothing for fear of hurting their feelings? When you’re searching for a law firm to defend your company from a competitor’s lawsuit, do you choose the firm with the politest lawyers? No, because civility comes second to safeguarding your company’s funds, managing your employees’ performance, and winning lawsuits.

Likewise, civility should come second to protecting your employees from bias, increasing diversity and inclusion at your company, and complying with anti-discrimination laws.

2. Learn to recognize when calls for civility are actually requests to stop pointing out bias. There is a specific name for this: tone policing. Tone policing is when someone derails the conversation from the actual argument someone is making, and changes the topic to criticizing their “tone” — how they made the argument. In many cases, when someone is objecting to the “tone” of an argument, they are really objecting to anyone pointing out anything that might make them feel bad. Since pointing out their own complicity in bias makes them feel bad, it becomes impossible to make any argument against — or even name — bias in a way that the “tone police” find acceptable. To compound the problem, marginalized people are often expected to be more polite and respectful than people with more privilege, subjecting them to an unfair double standard in the workplace.

3. Prepare for people deliberately abusing the concept of civility. Google employees describe a pattern of weaponizing “civility” in discussions of diversity on internal mailing lists. One tactic diversity opponents use is provocation: demanding that diversity advocates answer the same basic questions over and over, until someone loses patience and replies in an “uncivil” manner. Then they report the diversity advocate’s reply to HR, who, lacking the context of the continuous bad-faith demands for explanation, punishes the person who actually cares about the company’s well-being. Diversity opponents also leak replies to hate groups outside the company, who then target diversity advocates with external harassment campaigns, as happened to several Google employees, and to a trans woman manager at Facebook.

In this way, employees acting in bad faith can trick a company into driving away or firing some of its most valuable employees.

Ellen Pao, Project Include CEO, reports a growing trend in which tech employees deliberately attack their employer as part of larger coordinated social movements promoting white supremacy, misogyny, transphobia, homophobia, Islamophobia, and many other forms of oppression. “I hear every day from tech employees and executives, and many tell me in painstaking detail about how hate groups are using tech platforms and workplace communities to spread their ideas, onboard new recruits, and train them on how to execute these ideas in their companies,” writes Pao.

Many of these techniques were tested in online communities before being deployed at tech companies. In 2015, a volunteer working to increase the percentage of women editors of Wikipedia was banned from editing Wikipedia for having a “battleground mentality,” while the volunteers who were harassing her with fake pornography and sexist profanity were protected by the committee that mediates volunteer disputes — mirroring techniques currently used at Google. At Facebook, employees are complaining about what they describe as “alt-right tactics” being used to shut down discussions about diversity.

To avoid your company becoming the next battleground for organized hate groups, train your managers and human resources staff to recognize and correctly respond to attacks by your employees, including provocation, tone policingderailing, and double standards for politeness. In addition to training, review and update your company values and/or code of conduct. A common mistake is the inclusion of “assume positive intent” or a similar guideline in your company values or code of conduct. As Annalee Flower Horne explains, telling your employees to always assume positive intent harms diversity and inclusion by putting marginalized people at a huge structural disadvantage, because they are more likely to be the target of bias, intentional or unintentional.

We see some signs of tech companies making progress in understanding the new cultural landscape. Google recently announced important changes to its internal code of conduct designed to reduce the impact of organized harassment and discrimination by its employees. While the updated policies still focus too heavily on civility and not enough on power imbalances, employees targeted by harassment are cautiously optimistic. “I’m hopeful that we will see our culture improve over the next few months,” said Liz Fong-Jones, a Google site reliability engineer viewed by many as an expert in identifying and countering harassment.

Calls for civility are often simply calls to accept and support bias in the workplace. To prevent this, your company should prioritize fighting bias over civility, recognize that some employees deliberately use the concept of civility to further the goals of organized hate groups, and train employees to recognize and reject false appeals to civility. If you succeed, you will stop hate groups from damaging the health and competitiveness of your tech company.

Clarification of Double Union post

Last week, several people interpreted my blog post explaining why I left Double Union as supporting some specific transphobic ideas. I strongly oppose those transphobic ideas, and I am particularly sorry for the pain that people who are trans and/or non-binary experienced as a result. In this blog post, I will restate my relevant beliefs in a more concise form. My goal is to make it harder for people to use my Double Union blog post to harm trans and/or non-binary people.

I believe that some non-binary people experience more oppression than some women. In my original post I wrote, “Some but not all non-binary people experience more oppression than women, all other things being equal.” Someone summarized my post as arguing the opposite: that non-binary people face less discrimination than women. I don’t believe that.

I believe that membership in a gender-based group should be based on self-identification, not on how well someone passes as a particular gender. The main purpose of my original post was to argue in favor of the previous Double Union membership criteria of “identifies as a woman in a way that is significant to you,” which is based on self-identification rather than passing privilege. I believe that a person’s gender is the gender they identify as, not the gender other people assign to them. This belief is so fundamental to both my personal beliefs and my public body of work that it did not occur to me to state it explicitly in the original post, for which I am sorry.

I believe that trans women do not have significant male privilege. I wrote in my original post, “When someone publicly identifies as a woman—even partially—they pretty quickly lose most of any male privilege they previously had.” This includes out trans women. (As of this writing, there is an active debate on what privileges closeted trans women have and I am listening quietly.) I believe trans women are women and have insisted that any group I create or participate in reflects that belief.

I believe that groups exclusively for the members of a specific marginalized group are an important part of fighting oppression. I believe that the benefits of these groups are worth the hurt and pain this causes to people who are excluded because they aren’t part of the marginalized group. I feel sorry for the pain that causes to the people who want to join and can’t. I wish there was a way to get the benefits of these exclusive groups without excluding anyone. I’ve been part of or watched several attempts to create gender-inclusive groups that center people who identify as women in a way that is significant to them. The result was a group that instead centered people with significant male privilege (including some non-binary people) and aided some of them in harassing and abusing people with little male privilege (including some non-binary people). I don’t know how to prevent this other than by excluding people who don’t identify as women in a way that is significant to them.

I believe that people who are members of marginalized groups should lead the discussion of issues that primarily impact them. As a member of the marginalized group “people who identify as a woman in a way that is significant to them,” and a then-member of Double Union, I believe it was appropriate for me to express my concerns about how expanding the Double Union membership criteria to include people who are not part of that marginalized group would affect people who are part of that group.

I appreciate the people who gave their time and energy to discuss the original post and its impact on them. I believe it is reasonable to disagree on what the Double Union membership criteria should be and I respect many people who advocate for different membership criteria than the one I helped create. I tried my hardest to write a post that would not cause unnecessary pain or reinforce oppression, especially for people who are trans and/or non-binary. I am truly sorry that its impact on many people was the opposite. I am continuing to think about how I can better prevent that in the future.

What I learned writing my first non-fiction book

Book cover showing a beach with seagulls

I am so excited to announce that I just released my first book, “How to Respond to Code of Conduct Reports.” You can download it for free from my business website. The book is based on a short guide by Mary Gardiner, and edited by Annalee Flower Horne. Responding to code of conduct reports is incredibly difficult and easy to get disastrously wrong. This book will help community leaders get their response right, the first time. If you know anyone who manages a community or organizes a conference, send this link their way—they will thank you!

At 43,000 words, this book is by far the longest piece I’ve ever written (technically novel-length!). I’m used to writing articles for online reading, where the goal is to communicate your idea in as few words as possible, and every word over 700 is a growing liability. Until now, the longest thing I’ve written was a 15 page conference paper. I honestly did not know whether I could write an entire book; I was afraid that I would get bored or distracted or be unable to push through any difficult parts. Now that I’ve actually written the book, I want to share what I learned.

Editors make good writers great

I was worried that I wasn’t a good enough writer to write a high-quality book, and it turns out that I was right about that. My first draft was terrible! I mean, truly bad and dull. But the book’s quality improved dramatically every time an editor made a pass over it. It’s at least twice as good as it would have been without my professional editors, Annalee Flower Horne, Y-Vonne Hutchinson, and Paloma Figueroa. My volunteer reviewers helped quite a bit as well, but the major breakthroughs in organization and content came from paid professional editors. Investing a few thousand dollars in professional editing turned this book from a disjointed collection of tips to a structured, readable, comprehensive reference.

Slow but steady gets the book done

While I was writing this book, I was also working part-time as a consultant teaching Ally Skills Workshops. I wanted to know how many hours I spent on this book, so I tracked my writing hours on my calendar. I spent 136 hours writing or editing this book. My paid editors spent 32 hours editing, and I estimate my volunteer reviewers spent a total of 50 hours. I based the book on a short outline written by Mary Gardiner, which I estimate took 10 hours to write. The final word count was 43,000 words, for a totally unscientific result of 43,000 words/228 hours = 189 words per hour of writing/editing work.

In terms of elapsed time, I started writing on February 21st and finished my last edits on November 27th, for 280 days or almost exactly 9 months. I wrote on 59 days during that time. On days that I wrote, I wrote for an average of 2.3 hours, with 3 hours being the most common amount of time per day. For the first draft, I wrote several days a week for 2.5 months, and then wrote about 5 days a month thereafter. The months of June, July, and August were extremely busy for me in terms of workshops, travel, and illness, including two weeks of time off. As a result, I did not write at all during the month of June and only 2.5 hours in August. Initially, I thought this was a sign that I would not finish the book, but once my workload was back to normal, I was easily able to put in a few days a month until it was ready.

In the end, I was able to write a novel-length book in 9 months by writing 2-3 days a week for an average of 2.5 hours a day for 2.5 months, followed by 6.5 months of writing and editing a few days a month. This fits in pretty well with what I’ve read about how many fiction writers work.

Writing breaks help, not hurt

I was surprised how helpful writing breaks were. My previous career was as an operating systems programmer, where every hour I spent away from the code made me less able to work on it. Often I’d have to spend the first hour of work just reloading all of the information about the code into my brain. To speed this up, I kept a file named “STATE” in which I would write down my current understanding of the problem before I stopped work each day, and then read it when I started work in the morning. I subconsciously expected something similar when I came back to the book after a month away from it and dreaded coming back from my first long writing break.

Instead, taking a few weeks or months away from the book made me a better editor, precisely because I no longer had all the “state” of the book loaded into my head and I was approaching it more like the reader would. For example, I figured out that the introduction needed to tell people how to use the book, not summarize what was in the book.

Writing breaks can include writing other projects! Near the end of the book, I decided to take a week’s vacation, and ended up spending 5-8 hours a day working on a blog post on an entirely different topic. It still felt like a vacation from writing the book (other than my eyes being a little tired).

In retrospect, the importance of writing breaks shouldn’t have been as much of a surprise. Fiction authors talk all the time about “putting away a manuscript for several months” before coming back to edit it. For the last few years, my main writing activity has been writing blog posts, most of which I work on once every 2-3 weeks for several months before I publish them. (Noticing that I usually finish these blog posts, even though they take months to write, is one of the reasons I thought I could write an entire book.)

I love to write

My biggest fear was that, without an external deadline or contract, I would get bored with the book and not finish it. A lot of my writing experience has been under time pressure: a conference paper submission deadline, writing a news story for an online publication, pumping out copy for a fundraiser. I used to stay up late at night, writing furiously and feeling alternately elated and miserable. The best thing I can say about writing this way is that it cured me of writer’s block. After leading five fundraisers for the Ada Initiative, I can always write something—maybe not a good something, but a something that can at least be edited into the semblance of goodness.

I was curious to see how I would write when my motivation was entirely self-imposed. While there were a few days during the first draft when I was watching the clock as I pounded out uninspired dreck at the coffee shop, I always at least began the day excited about writing. I often wrote in the evenings or on weekends because I couldn’t stop thinking about what I wanted to write next. I initially used my tricks to force myself to write—going to a coffee shop, writing on planes or trains, reserving time on my calendar—but after a while I realized that I could write even without creating an artificial sense of commitment.

Being able to take breaks while writing instead of working furiously straight through to a deadline made writing much more enjoyable for me. My goal is to continue writing in such a way that I’m rarely or never pounding out content for a deadline a few hours away.

Ebooks are a mess

I decided to “publish” the book by hosting ebooks on my business website (although I may upload to online book retailers later). I looked forward to generating ebooks from my original manuscript (in Google Docs) because I knew it would be a hilarious, bug-ridden disaster and I would have to solve all sorts of strange problems. I was not disappointed. Google Docs has an option to download an EPUB which… is formatted with un-reflowable text! Calibre will make a MOBI file… which cannot render the border of a table! I have an entire document outlining different ways to generate different ebook formats and what the bugs are in each method.

Once I succeeded in generating error-free ebooks, I discovered that using Amazon’s Send to Kindle email address adds new bugs. For example, side-loading the MOBI format via USB onto the Kindle Paperwhite produces a document with the correct start page (the first page after the Table of Contents). But sending the same MOBI via email runs it through Amazon’s publishing machinery, which for no discernible reason resets the start page to a few pages after the Table of Contents. I discovered that this is related to Amazon Kindle Unlimited pages-read scamming: to increase their payouts, authors “stuff” ebooks full of extraneous material, put the thing people actually want to read near the end, and set the start page several thousand pages into the ebook. Since Kindle Unlimited authors get paid relative to the pages read of their books, this fraudulently increases their payment. As a result, Amazon now resets the start page to what they think it should be if it passes through their publishing machinery (which happens to be the wrong page in my case). Send to Kindle via email to the Kindle app on iOS also mangles the formatting badly, despite it displaying correctly on the Kindle Previewer in phone mode. If you run into these bugs, I recommend sideloading the book via USB.

Here are the methods I ended up using to generate the different formats:

  • PDF: Download as PDF from Google Docs
  • EPUB: Download as .docx from Google Docs, use calibre to generate the EPUB with the “add an extra space after each paragraph” option turned on
  • MOBI: Use kindlegen on the EPUB generated by calibre
  • AZK: Generated by calibre from either EPUB or .docx (not sure which)

The best way to find typos is to publish

It’s true: the best way to find typos in your manuscript is to share it publicly. I even found one link that had the exact same error in four different places! (Sorry, Kara.) Fortunately, all I have to do to correct typos is regenerate the ebooks when I feel like it and upload them to my website again. If you find a typo, please email me at contact@frameshiftconsulting.com.

Thanks for reading, and I hope you download and enjoy my first book, “How to Respond to Code of Conduct Reports!”

Finding food allergies and sensitivities

A little over five years ago, I stopped eating one food. About a month later, I suddenly realized that, for the first time in nearly seven years, I did not want to die. My history of untreatable suicidal depression, insomnia, and anxiety became just that: history. At the same time, a bunch of other little health problems cleared up (skin infections, weak fingernails, acne, etc.). I felt amazing!

It turns out I spent most of my life depressed and sick because I didn’t know I was allergic to wheat, which, as anyone with celiac disease can tell you, is omnipresent in the American food system. Over the next few years, I discovered more food allergies and sensitivities with symptoms ranging from “severe stomach pain” (guar gum) to “turn bright red and feel tired” (dairy). Eventually I learned that multiple food allergies was a common symptom of my rare genetic disease, hypermobile Ehlers-Danlos Syndrome (hEDS).

At first I thought my experience was a fluke, but now I’ve met dozens of other people who had similar major improvements in their health once they figured out their own food sensitivities. I am sharing how I found my food sensitivities in this post because, frankly, finding them is super hard! While most of my friends without hEDS have only one food sensitivity, we all struggled for years or decades to figure out the problem, only to have it disappear once we stopped eating the right foods.

Some of the reasons why finding food allergies is so hard:

  • Most doctors are dismissive of the idea that health problems can be caused by food sensitivities or allergies and will assure patients that their problem “can’t” be caused by diet.
  • Food allergies can be erroneously ruled out by inaccurate tests. For example, food allergy blood tests can only detect a subset of allergies, but are often taken as proof of no allergy.
  • Allergy tests can also have false positives if people are experiencing a lot of allergic reactions at once.
  • Some allergies are the result of a combination of different factors. For example, in oral allergy syndrome, people have allergic reactions to specific foods only when certain pollens are in the air.
  • The symptoms of a food sensitivity can be subtle. Many of us think all food allergies are life-threatening, like your friend with the nut allergy who has to carry an Epi-Pen everywhere. But if you have a milder allergy or sensitivity, the symptoms might be far subtler: maybe three or four small red dots on your chest that you mistake for pimples, or abdominal swelling that you dismiss as “just gas.”
  • If you eat the thing you’re allergic to on most days, you might never realize the connection between the food and the symptom, or that it is even a symptom, because you have the symptom all the time and that’s just “how you are.” If your allergy is related to a genetic predisposition, other members of your family may also “just be that way.”
  • If you have multiple food sensitivities, the symptoms of the other sensitivities might mask any relief you get from stopping eating just one of the foods.
  • Most of us eat a lot of processed foods, which not only have dozens of ingredients, but also contain trace amounts of common food allergens that aren’t even listed on the label.

My experience finding my wheat allergy illustrates many of these points. I have an unusually good doctor who had suspected for years that I had a wheat allergy and repeatedly urged me to try eating gluten-free for a month. But the first time I tried going gluten-free, nothing changed because… I was still eating wheat. For example, I didn’t know that most oatmeal has wheat flour mixed in it. Turns out, oatmeal is often made in the same factory as wheat flour, and the wheat flour floating in the air gets into the oatmeal. Also, I’d tested negative for the common genetic markers for celiac so I “knew” that small amounts of wheat couldn’t hurt me (wrong!), so I continued to eat soy sauce even though I knew it had wheat in it. At the end of the month, I told my doctor I clearly didn’t have a gluten allergy because nothing had changed—when I had eaten wheat almost every day of that month.

I tried going gluten-free again years later after having several friends with celiac disease who showed me what it took to eat 100% gluten-free. I also spent a lot of time on gluten-free websites self-educating myself on the American food system. This time it worked; I felt somewhat better within two weeks, and obviously better after one month. The most striking change was that I no longer had suicidal ideation for the first time in seven years. Once my body was healed up enough, I could tell when I’d eaten wheat by the return of small, immediate symptoms. The effects of my wheat allergy are so bad that I’ve only voluntarily eaten wheat once in the five years since I went completely gluten-free for a month—but until then, I had no idea I was allergic to wheat.

Signs you might also have an undiagnosed food allergy:

  • Skin problems (acne, blackheads, red spots, redness, scaly skin, oily skin, rashes, etc.)
  • Fatigue
  • Depression
  • Insomnia
  • Gastrointestinal problems (acid reflux, gas, IBS, diarrhea, constipation, etc.)
  • Joint pain
  • Muscle pain
  • Migraines or headaches
  • Asthma
  • Frequent colds and sinus infections

All of these symptoms can also be caused by other problems, but if you’ve been trying to treat the symptoms for years and having little success, it might be reasonable to experiment with just not eating some foods for a month. Talk to your doctor first, but so far I haven’t found any peer-reviewed research showing that, e.g., not eating wheat is harmful to the average person.

Some of these symptoms seem straightforwardly connected to food allergies (like anything involving the GI tract) but others are more mysterious. I have various theories about how all of these things are connected, supported to one degree or another by peer-reviewed medical research. Skin symptoms seem relatively straightforward: acne is hard to differentiate from hives, raised histamine levels clearly affect the skin, and skin pores are one method of excreting unwanted material from the body. On mental symptoms, my theory is that some food allergies harm the small intestines enough that your body has difficulty absorbing nutrients, like vitamins and fats, that are required for the healthy functioning of the brain. You may be eating a nutritious diet, but your body literally can’t digest what you eat. When it comes to asthma and colds, my theory is that the inflammation created by the food allergy makes the lining of the respiratory tract swollen and irritated, making it easier for germs to infect it. Also, food allergies can aggravate GERD, and the reflux can actually get into the lungs, causing asthma. These are my theories; all I know for sure is that for me and many other people I know, the symptoms listed above declined or disappeared when we eliminated certain foods from our diets.

So, how do you figure out if you have a food sensitivity? I’m going to describe three methods:

  1. Medical testing
  2. Eliminate one food at a time
  3. Eliminate all common allergens and reintroduce one-by-one

If your symptoms are severe and you’ve been trying to solve them for a long time, I’m going to recommend option 3 as the quickest route to feeling better.

Medical testing

Medical testing for food allergies is quite limited but if you have health insurance that covers these tests it can be an easy win. All food sensitivity tests I’ve researched have significant false negative rates (a false negative means the test says you don’t have a reaction to the food when in reality you do). Here are a few of the most common:

  • Celiac testing: Celiac disease is “multifactorial”—a combination of several genes and environment. The genetic testing can only say whether you have a known genetic predisposition to develop celiac disease. The other celiac tests can show that you have active celiac disease, but many people who don’t test positive still feel much better when they don’t eat wheat.
  • Skin test: This is a test where food extracts are applied to the skin (often in small cuts or pricks) and observed to see whether an allergic reaction in the skin results. This can find a food allergy, but not rule one out, as it is common for different tissues of the body to have different levels of allergic reaction to the same allergen. Your skin might not mind watermelon, but the inside of your throat might quite object.
  • Blood antibody tests: There are many different kinds of antibodies involved in food allergies, and current tests only measure a small subset of the possible antibodies. They also only work for foods you are currently being exposed to.

Skin and blood tests are also limited to a particular subset of foods, and you have to choose which ones to test for. You may not order the right test, or the test might not be available through your health care system, or the test for the food you are allergic to might not exist. When medical tests do find a food allergy, you can confirm the allergy by avoiding that food completely and then eating it again and observing your body’s reactions.

If you are lucky, medical testing will find your food sensitivity quickly, and your food sensitivity journey will be over. For lots of people, it’s not that easy. For me, I found one of my food sensitivities through a blood test (mustard seed), but I tested negative for all of my other food allergies.

Eliminate one food at a time

Another approach is to pick a specific food and eliminate it entirely from your diet and see how you feel. Sometimes you’ll have a suspicion or bad feeling about the food that you’re allergic to, based on unconscious associations between eating a particular food and feeling worse afterward. Often we ignore this unconscious dislike because as a society we praise people for having broad palates and for not being “picky eaters.” You may think, hey, bell peppers aren’t my favorite food, but they aren’t disgusting and I’m an adult, so I’ll eat them whenever they are served to me—when actually you don’t like them because they make you feel mildly sick for several days after you eat them.

The difficulties with the one-food-at-a-time approach include:

  • If you don’t find the food immediately, it may take years or decades to find it, since it takes several weeks to test each food.
  • If you have multiple food allergies, your reaction to the foods you are still eating may hide the relief you get from stopping just one food.
  • You may have a sensitivity to an entire class of foods, such as nightshades (tomatoes, potatoes, peppers, eggplant, etc.).
  • Some foods are common contaminants of processed foods—that is, they aren’t on the ingredient label, but they are present in the food due to contamination when they are processed in the same facility or cooked in the same kitchen.
  • Some foods are listed on the labels of processed foods but hidden under catch-all terms like “natural flavors” or “spices.”

While one-food-at-a-time technique eventually worked for my wheat allergy because it was so severe, it did not work the first time I tried it, due to contamination, and it did not work for my other allergies. For several years I had a rotating cast of foods I didn’t eat, on the theory that only one food was causing the problems: eggs, then dairy, then corn. I’d feel a little better than I did eating all foods, but I always assumed only one food was causing the problem, and as soon as I stopped eating a new food, I’d start eating the old food again, just because it is so hard to find something to eat otherwise.

One-food-at-a-time is a good choice when you have a list of a few top suspects for your food sensitivity and you have the time and resources to research how it might be hidden in your foods and make sure you’re truly eliminating it.

Eliminate all common allergens and reintroduce one-by-one

You can also try eliminating a big list of foods that often cause allergies and sensitivities all at once, waiting a month, and seeing if any of your symptoms improve. If they do, you then introduce the foods back one by one and see if your symptoms come back. This system has the advantages of feeling better quickly if the foods you are sensitive to are on the list, and then continuing to feel good except for the brief periods of time after you reintroduce those foods (as opposed to feeling bad until you find the food you are sensitive to, as in one-by-one elimination). It also works better when you have multiple food allergies, as the symptoms for one are less likely to mask the symptoms of the other if you eliminate them at the same time. The downside is that it’s really hard to eat for several months: you’ll have to relearn how to cook with a different and smaller set of ingredients and eating out will be really tough. Depending on how you currently eat and what grocery stores are near you, you may save a lot of money on food, or you may need to spend more money on food.

If you have really serious symptoms that are interfering with your life, or you have already tried eliminating one food at a time and felt a little better but not significantly better, this might be the right option for you. There are two well-documented diet plans you can try.

Autoimmune Paleo Diet

The word “paleo” probably reminds you of that annoying person lecturing other people about what to eat based on their personal fantasies about what people ate in prehistoric times. That’s super annoying and also not useful for tracking down food allergies. I’m talking about a different version of “paleo” here: the Autoimmune Paleo Diet is based on hundreds of peer-reviewed research papers on the effects of specific foods on modern-day humans. This version of “paleo” is about looking at the science and saying, “Hm, perhaps that food is harmful because we measured the way it harmed people in a scientific study.”

The Autoimmune Paleo diet (AIP diet) is the diet I tried when I was having mysterious stomach pain that prevented me from sleeping (that turned out to be guar gum). It is especially good for people whose symptoms are connected to autoimmune diseases, but it also works for many other common food allergies and sensitivities. In addition to eliminating possible harmful foods, it also recommends a lot of highly nutritious foods: bone broth, organ meats, high vitamin vegetables, etc. The goal is to give your body the nutrients it has been missing out on so it can rebuild your tissues. It also recommends sources of helpful bacteria to rebuild your gut flora. This diet comes with instructions on when and in what order to reintroduce foods.

The upside of this diet is that if you are suffering from any of dozens of problems, you’ll start feeling better pretty quickly. When I tried it, I went from being sleep-deprived due to stomach pain waking me up, to sleeping through the night in something like a week, which let me keep working my job when I thought I might have to take medical leave. You’ll also have a pretty clear idea of which foods were causing the problems if you follow the instructions on reintroducing foods.

The downside of this diet is that most people will have to relearn how to cook, buy new ingredients and cooking utensils, and have a lot of trouble eating at restaurants. If you share meals in a household, you will probably have to cook separate meals for yourself for a while (and maybe forever depending on what you learn). This diet involves eating a lot of animals; even if you are already comfortable doing that, it recommends eating parts of animals that many people in the U.S. think are gross. (This part isn’t necessarily crucial; for me, drinking high quality bone broth was the important part.)

I personally struggled a lot with the ethics of eating more animals. If I had my way, I would be vegan for environmental reasons, and eating animal products really grates on me. I came to this resolution for myself: I have a medical condition which requires me to eat a certain amount of animal products in order to be a healthy functioning member of society. Within those constraints, I make the most ethical choices possible. One aspect of this diet is that I often eat the parts of animals that end up being thrown away, such as bones. I also eat red meat very seldom, since it contributes to greenhouse warming more than pork or chicken or fish.

There is an extremely long and detailed book outlining all the research behind the AIP recommendations, but it takes forever to read and focuses on the theory more than the practice. I did the AIP diet using the Autoimmune Paleo Cookbook by Mickey Trescott, which has most of the information you would need to go through the entire process of finding your food sensitivities. I also did a couple of online consultations with Trescott to ask advice on tricky problems (e.g,. for a while I could eat while white rice no problem, but brown rice or rice flour made me sick). I also wrote a blog post about eating paleo while shopping (mostly) at Trader Joe’s.

Whole 30 with modifications

There is a lot of nonsense about “purification” and “detox” and “eating clean” around the Whole 30 program, and I object strongly to that kind of moralistic framing of food. If you can work around that judgmental cruft, you’ll find that Whole 30 is super useful for tracking down food allergies. This is because of the strong emphasis on eating mostly whole foods in the most literal sense: when you cook using food that hasn’t been processed, you can see with your eyes what is going into your body. When you cook with food that has been processed a lot, you literally can’t see what other foods are included in it, which makes it hard to track down food sensitivities. Whole 30 also already eliminates many common sources of food sensitivities, although I would suggest eliminating eggs, clarified butter, nightshades, and seeds as well.

The advantage of Whole 30 is that a lot of free resources and recipes are available online, and it doesn’t require buying a lot of new ingredients or cooking utensils. It doesn’t put any emphasis on eating animals or animal products (though in general it’s hard to eat enough calories on a vegetarian diet without grains or sugar so it will be a lot of work). The disadvantage is that it involves a lot of cooking and makes it hard to eat out. It also doesn’t include specific guidance on which foods to reintroduce when.

Whatever system you use, I recommend spending at least a month eating mostly “whole foods”: foods that are totally unprocessed and aren’t contaminated by other foods in a factory or a commercial kitchen. It will make narrowing down your food sensitivities much easier if you know what you are really eating.

Random useful stuff

FODMAPs: This is an acronym for a set of carbohydrates that are difficult or impossible for many people to digest. Instead, your gut flora digests them, producing gas, inflaming your gut, and overpopulating your gut with microorganisms. Sometimes this results in SIBO: small intestine bacteria overload, where bacteria invade the small intestine. Many people feel better when they reduce the quantity of FODMAPs they eat. Some people are much more sensitive to specific FODMAP, such as fructose. While this isn’t a food allergy, it is a food sensitivity, and fixing it will make it much easier to detect any other issues. It also can make a huge difference in your quality of life.

Probiotics: Having too little, too much, or the wrong kind of microorganisms in your GI tract can be both a symptom and a cause of food sensitivities. One form of this problemis the aforementioned SIBO, small intestine bacteria overload. The fix usually involves one or more of:

  • Taking probiotics (increasing “good” microorganisms)
  • Cutting down the food that “bad” microorganisms feed off
  • Antibiotics to kill off “bad” microorganisms

It takes month or years to change your gut flora, so keep at it! The payoff is so worth it.

Acidity: Some folks need to eat less acid-producing foods to be healthy. Some foods don’t seem acidic but the end result of digesting them is a higher level of acid. Sugar, salt, and grains are three examples of acid-producing foods that don’t seem acidic but will increase the acidity if your body.

Supplements and drugs: If you take any supplements or drugs, they may also be triggering food sensitivities, depending on their ingredients and how they were processed. Even switching brands of supplements can trigger new symptoms if the other ingredients change. I’m currently tracking down a sensitivity to one of my supplements using binary search: I stopped all the supplements; then when I stop having the symptoms, I reintroduce half my supplements; if I have the symptoms, I cut the supplements in half; if I don’t have symptoms, I add back half of the remaining supplements. Repeat until you find the specific supplement that is causing the problem. I’ve started keeping a diary of changes to my supplements and drugs, including manufacturer changes, so that I can track the source of sensitivities sooner.

Updated to add: Anti-allergy drugs and supplements: I take several things to reduce my allergic reactions to food. There are several steps in an allergic reaction, and I take something for each step. I also take higher than standard doses on some drugs because that’s the recommendation for people with hEDS and I feel better. Talk to your doctor to find what is right for you. My current list:

  • Mast cell stabilizer: sodium cromolyn (Gastrocrom)
  • H2 blocker: famotidine (Pepcid AC)
  • Anti-leukast: montelukast (Singulair)
  • Many things: quercetin

The drugs reduce my reactions when I do eat something I’m allergic to, sometimes to the point that I don’t mind eating them (like almonds) but I generally don’t eat them anyway.

That’s a lot of what I’ve learned about finding food sensitivities and allergies! I hope it helps you find any food sensitivities you may have with the minimum of time spent feeling awful.

Double Union is dead, long live Double Union!

Updated on April 17, 2019.

After several helpful conversations, I have decided to that I am no longer willing to host the original content of this post (but you can still read an archive of it here). I am deleting it because I was intending to support and center people who are the target of misogyny, but instead I gave support to various transphobic ideas which I definitely disagree with. That’s my mistake, and I don’t want to host content that harms trans and/or non-binary people. I am sorry for the harm I caused to trans and non-binary people. In order to reduce harm going forward, I have decided to stop writing about any trans- or non-binary-related issue more complicated than using someone’s correct name and pronouns.

If you are reading this because you are trying to decide whether or not to work with me, I’ll just say up front: If you are looking for someone who has never done or said something transphobic, or racist, or sexist, I can’t meet that standard. I can share with you how I make decisions about who I work with: I look at the overall pattern of someone’s behavior. In the past, did they try hard to do the right thing, did they apologize when they made a mistake, and did their behavior improve over time?

If you want to use the same method to make a decision, here is some information about my past behavior. Starting in 2001, I co-founded or was a lead volunteer for the trans-inclusive feminist activist groups LinuxChix, Geek Feminism, Ada Initiative, and Double Union. I created and supported online communities, conferences, a hackerspace, and codes of conduct, and worked hard to follow current best practices for including and supporting trans and non-binary people (as well as other marginalized groups). When I made mistakes, I apologized, made amends, and changed my behavior moving forward.

When people ask me why I work with people who have made mistakes in the past, I explain that I don’t expect people to never make mistakes, I expect them to try their best and to learn from their mistakes. Other people may have different standards for the people they work with.

My work on ally skills is about helping people with privilege and power understand their impact on the world and avoid unforced errors, so that the world will be safer for everybody. I can’t take back my own mistakes, but I can serve as a coach and a buffer and hope that my work leaves the world better than I found it.

Hiring a facilitator for the Ally Skills Workshop

Frame Shift Consulting is getting so much business that I need another facilitator to help me teach Ally Skills Workshops! Short version: We are searching for a second part-time facilitator to help teach the popular Ally Skills Workshop at tech companies, primarily in the San Francisco Bay Area as well as around the world and online.

I’m especially interested in interviewing people who have some significant personal experience as a member of a marginalized group (person of color, queer, disabled, etc.). If that’s you and you’re even a little interested in the job, please consider spending 5 minutes slapping together an email with a link to your out-of-date typo-ridden résumeé. What’s the worst that could happen, you end up with a part-time gig being paid lots of money to teach people ally skills?

Here are the basic requirements:

  • Software experience, broadly defined (infosec, data science, testing, design, UX/UI, etc.)
  • Teaching experience, broadly defined (speaking at conferences, volunteer teaching, etc.)
  • Strong grasp of research and terminology around multiple axes of oppression
  • Residence in the San Francisco Bay Area
  • Work rights in the U.S.

If you’d like to learn more, including how to apply, check out the detailed job description.

Something is rotten in the Linux Foundation

When I agreed to talk about the management problems at the Linux Foundation to Noam Cohen, the reporter who wrote this story on Linux for the New Yorker, I expected to wait at least a year to see any significant change in the Linux community.

Instead, before the story was even published, the Linux project leader Linus Torvalds suddenly announced that he was temporarily stepping down from his leadership role. He also instituted a new code of conduct for the Linux kernel community after resisting years of requests for one.

I was (and am) astonished. So is everyone else. Now that I’ve read the New Yorker story, I am even more surprised–everything in it is public knowledge. Here’s why I don’t think the story explains why he stepped down.

Torvalds has been in charge of Linux for 27 years, and he’s been verbally abusive most of that time. I know, I personally spent more than 15 years struggling to change the Linux community for the better, first as a Linux kernel developer for more than 7 years, then as co-founder and executive director of a non-profit working to make things better for my fellow kernel developers. In 2016 I sent a letter to the Linux Foundation board of directors detailing pervasive mismanagement at the foundation. Nothing I or anyone else did changed the culture of Linux.

I finally realized why the Linux community was enduringly toxic and resistant to change: because Torvalds likes it that way, and he can inflict millions of dollars of losses on anyone who tries to stop him.

How? Well, if Torvalds’ employer, the Linux Foundation, pressures him, he can quit and they will lose millions of dollars in revenue, because paying Torvalds is the main reason sponsors give the foundation money. If a Linux Foundation sponsor tries to make Torvalds change, he can retaliate by refusing to integrate the sponsor’s code into the Linux kernel, forcing that sponsor to pay millions of dollars in software maintenance costs. If an individual Linux developer confronts Torvalds about his abusive behavior, their Linux career will end.

Torvalds also fostered a cult of personality whose central tenet is that Linux will fail if Torvalds is not its leader. In this system, Torvalds has little incentive to stop doing anything he enjoys, including verbally abusing other Linux developers.

My hope was that if a news story exposed this underlying power structure and showed how Linux Foundation sponsors such as Google, Intel, and HP are paying millions of dollars to fund toxic harassment of their own employees, the sponsors would act in concert to force some change, hopefully sometime in the next year. Instead, the usually intractable Torvalds abruptly stepped down before the story was even published.

I can’t think of anything I told Cohen that would result in anyone risking millions of dollars to confront Torvalds this quickly and forcefully. Maybe it’s a coincidence; when the New Yorker reached out for comment, Linux developers were also angry about another issue. It’s possible Torvalds took other developers’ feedback about his abusive behavior seriously for the first time–in 27 years. But the announcement seemed weirdly rushed even to the developers asking for change.

I don’t know what the real explanation is. I suspect the foundation’s board of directors doesn’t know either; a 22 person board is usually purely ceremonial. (Did you know that the larger a board is, the less likely it is to fire the CEO?)

But you know who probably does know the explanation? Senior former Linux Foundation employees, and with the recent high turnover rate at the foundation there are quite a few.

Here’s what I suggest: Linux Foundation sponsors should demand that the Linux Foundation release all former employees from their non-disparagement agreements, then interview them one-on-one, without anyone currently working at the foundation present. At a minimum, the sponsors should insist on seeing a complete list of ex-employee NDAs and all funds paid to them during and after their tenure. If current Linux Foundation management balks at doing even that, well, won’t that be interesting?

If you’d like to support people working to fix harmful workplace conditions, please donate to BetterBrave, which helps employees fight workplace harassment, including sexual harassment and discrimination. Thank you!

If you’re being abused at work, I hope you will keep meticulous documentation, pay attention to statutes of limitation, talk to a lawyer, and reach out to a reporter sooner rather than later. As the stories about Uber, CBS, and The Weinstein Company show, many boards of directors just rubber-stamp the abuses of the CEO and upper management until someone talks to a reporter. I’m also happy to listen to your story, confidentially.

Living in a collapsing democracy

The thing I did not expect was how helpless I would feel during the end of U.S. democracy. I read so many books and articles on what it is like living in a collapsing democracy, but I thought that since we all knew about how that worked now, we’d be able to stop it this time around.

I can’t stop it, and no one else seems to be able to either.

My last specific update on the growth of fascism in the U.S., back in January 2017, was a little hopeful. During the last year and a half, I was often encouraged and heartened by the role the courts played, opposing Trump’s various unconstitutional actions.

Then July 2018 happened.

After a series of horrifying Supreme Court decisions including upholding Trump’s Muslim travel ban, the supposedly moderate Justice Kennedy announced his retirement. The GOP made it abundantly clear they have been the party of power for power’s sake for at least a decade, maybe two, when they refused to authorize federal funding to improve election security while our voting systems are actively being attacked by Russia. Current polls show about a 75% chance the Democrats will take the House, and 25% that they’ll take the Senate – when the Democrats have +7 to +10 advantage on the generic ballot. The second largest political party in the U.S. and the one that currently controls all three branches of government is not just willing but eager to destroy our democracy as long as they can stay in power.

The most helpful book I read in this time is “How Democracies Die” by Steven Levitsky and Daniel Ziblatt (short summary here). Short version: our only chance to retain a functioning democracy in the U.S. is for the Democrats to win the 2018 elections, both House and Senate (there’s a tiny chance a Republican senator or two will caucus with the Democrats to save U.S. democracy but I’m not holding my breath). All of the other routes—mass protests, general strikes, various forms of violence, any funny business around changing constitutions or votes or similar—will just end up with a strongman of one sort or another and the end of democracy in some other way.

The odds of U.S. democracy making it through the next year intact are low and dropping (33% seems optimistic to me). My personal decision is to work hard on winning the 2018 elections. I’ve already donated thousands of dollars to various swing elections, and I’m planning to do phone banking or other forms of volunteering for the same campaigns. I encourage others to do the same.

It seems awfully likely that the 2018 elections will be stolen one way or another, in addition to the already existing systemic biases in districting and representation that give the Democrats such an enormous disadvantage. The simplest way will be to use the technique that the Republicans are already using and that it appears Russia may have adopted as well: stop likely Democratic voters from voting, by purging the voter rolls, voter ID laws, or spreading lies and disinformation. I’ll be thrilled if the Democrats take the House and the Senate, but I am in no way planning on it.

During the rise of Nazi Germany, there was a period of time around 1933 or so when a lot of people who had studied history left Germany voluntarily, years before the really startling violence began. Hannah Arendt, author of “Eichmann in Jerusalem” and “Origins of Totalitarianism,” among many other works, was one of them. In 1932, she was imprisoned by the Gestapo for eight days, and in 1933 she left Germany for Switzerland and later France. In 1937, Germany stripped her of citizenship. She escaped an internment camp in France in 1940 and came to the U.S. in 1941, spending a total of 13 years as a stateless Jewish refugee before being granted U.S. citizenship in 1950.

Right now, my best guess is that 2019 will be our 1933. My passport expires in 2019. I’m renewing it next week.