Valerie Aurora

Most of my friends know this already, but it’s time I made a public statement.

I am partially disabled, permanently.

I will become more disabled as time goes by. The most visible effect is that I have cut way back on my travel. International travel is so painful that I do it only when absolutely required.

I have Ehlers-Danlos Syndrome, type I or II (genetic testing hasn’t discovered my exact variant yet). I was diagnosed at a UCSF research facility based on a physical exam and the medical histories of myself and some of my family members. I am grateful I don’t have type IV, which often results in early sudden death. Instead, I have normal life expectancy, I’m just disabled and in pain starting a couple of decades earlier than the usual aging process.

I’ve done a lot of research on Ehlers-Danlos, and I’ll explain it in more detail later in this post. But first I want to say what ED means for me. It means I’m in pain most days of my life. It means sometimes I can’t walk more than 20 feet (once I had to beg someone to bring me a rolling chair so I could get to the bathroom and back by myself). It means that travel for more than a few hours causes me intense pain, and takes me several days to recover from. It means I sprained my ankle 40 times and broke it twice before I had surgery to stabilize it. It means any time I attempt to exercise, sooner or later I injure something that won’t stop hurting without a week of bed rest. It means I can’t work a “desk job” because I can’t sit at a desk without pain.

Ehlers-Danlos is a disorder affecting certain types of collagen. Its outward signs include flexible joints and soft, sometimes stretchy skin. People with ED often injure themselves easily, dislocate joints repeatedly, scar badly, have organ prolapses, and experience other wonderful symptoms.

Initially, ED just made me exceptionally flexible. As a kid, I excelled in gymnastics. I could always touch my toes – actually, put my palms flat on the ground. I was incredibly active as a kid and teenager: besides gymnastics, I rode and trained horses, slung 80 lb bales of hay around, carried 80 lbs of hot water at a time to the animals on cold mornings, and hiked. I was very proud of being strong and took every chance to lift boxes or carry things.

The first sign of trouble came when I sprained my ankle as a teenager, so badly I fractured it. I followed the physical therapy instructions carefully and thought I had recovered. Then I sprained my ankle again, stepping off a curb. And again. And again. Four sprains in one year.

The doctors kept telling me that I needed to strengthen my muscles. My calves were already huge and I was a weight-lifter, but I followed their instructions anyway. Another sprain. I bought every ankle brace on the planet. I sprained my ankle while wearing the different braces. I bought enormous hiking boots. I sprained it wearing the boots. (I remember now that I bought a pair of “nice” hiking boots to wear to my first Linux conference because I was too ashamed to wear my regular boots.)

Eventually, 40 sprains later, I had surgery to stabilize my ankle. I’ve had zero sprains since then, for which I am hugely grateful. I never knew when I would be walking around on my daily business and suddenly fall on my face and be stuck in bed with an ice pack for a week.

It’s been like that ever since, just with different parts of my body. Once I’ve injured a ligament or other connective tissue, it never completely recovers. Some things they know how to fix, others they don’t. Most of the time I am misdiagnosed or treated incorrectly because they assume my ligaments will behave like normal people’s.

Right now the worst is a recurring back injury that I first got on the way home from a Linux conference in New York City. That injury has no fix, so I have to avoid aggravating it. This means no sitting in most chairs, limited standing, no lifting, no carrying things on one shoulder (not even a MacBook Air!), walking only a few blocks at a time, no running, no bicycling. I re-injured it a couple of weeks ago and had to teach a workshop wearing a back brace, before going home to spend a week on the couch.

It’s been 4 years since I was diagnosed with Ehlers-Danlos Syndrome. It’s taken me that long to begin to accept the new me, and the changes in my life. I did stupid things like hike the Grand Canyon when I was in between injuries because I thought that hey, maybe I had this thing licked, I was strong enough now to avoid injuring myself. I was wrong.

This blog post is one more step along the path of acceptance. While I still believed that I would get better at some point, I tried to hide my disability. No point in telling people about something that’s going to go away, right? Now I’m realizing that it’s a downward slide. By taking really good care of myself, I can slow things down. That means letting people know that I can’t fly to Switzerland for a talk, that sitting in an office chair for 8 hours puts me in pain the entire next day, that I will never, ever take you up on that skiing trip.

I’m disabled.

A note on the mechanics of Ehlers-Danlos

There’s kind of a cool application of combinatorics in Ehlers-Danlos. The deal is that collagen proteins are made of 4 pieces, arranged like a capital ‘E’. The backbone is made of one protein subunit, and the 3 short arms are made of 3 identical protein subunits. The collagen protein only works if all 4 pieces are correct.

What happens in Ehlers-Danlos is that one of your two copies of the gene that makes the proteins for the 3 short arms is bad – it makes a deformed protein. So half of the short arms made are bad. When the collagen assembles itself, it randomly acquires 3 short arms from the available supply, which is 50% good subunits and 50% bad subunits. There are 8 equally likely possible arrangements:

GGG BGG GBG GGB BBG BGB GBB BBB

The only one that actually functions correctly is the GGG arrangement. So 7/8ths of the collagen your body produces is unusable, and ends up recycled or digested or otherwise thrown away by the cell protein checking mechanisms.

Having only 1/8th of the usual supply of a particular collagen type (there are several different types of collagen, and different Ehlers-Danlos types are related to defects in different collagen genes) is surprisingly unnoticeable for some collagen types. If you have Ehlers-Danlos type IV, the walls of your arteries and organs are weakened and you are often die suddenly of an aortic aneurism or ruptured bowel or something similar. More obscure types of Ehlers-Danlos have pretty awful manifestations. But in most cases, the only obvious sign is flexible joints.

Read more on Wikipedia.

Currently, I’m sitting in a coffee shop in a suburb of Sydney, scandalizing the owners by pouring my green tea into a cup of ice. They even came out and asked me questions about my iced tea, whereupon I listed all the different kinds of iced tea: rooibos, black, decaf, mango, green, etc. This makes up slightly for my embarrassment last night when I asked the server where the rest of my bento box was. (Answer: underneath the first half of the bento box.)

My task this morning is to merge the CiviCRM and PayPal databases of donors to get the addresses for sending people’s scarves, pendants, and stickers. I am doing this a week late. I am stricken with guilt but I had to finish other things before I got on the plane to Australia on Saturday. I finally sent the thank-you gifts to various people who were instrumental in starting the Ada Initiative this week, about 5 months late. I still need to hand deliver about half of them to people in San Francisco or Australia.

Next I am meeting my co-founder Mary in a few hours after the movers are done packing her house up, and we’re going into Sydney together to give an interview. Then we’re going to write several of the seven or so documents and presentations that are also a week late (or several weeks, or three months…).

The upside is that I love love love working with Mary in person. We originally planned to meet up twice a year, but we couldn’t swing it this year, so it’s been a year since we’ve met. We’re determined to make two visits happen this year. It’s like the sun coming up, working with someone else physically and in the same time zone, instead of toiling away on the Ada Initiative from my couch.

I theoretically had a week of vacation between Christmas and New Year’s Eve. It was my first week off since July, and I needed to relax badly, but instead I moved to San Francisco, which is almost but not quite entirely unlike taking vacation. I drove through Joshua Tree National Park for a teeny tiny mini-vacation.

I’ve never worked so hard so long without a break, and I can see the toll it’s taking. I make more mistakes, I’m less creative, my judgement is off, exercise is a distant fantasy. I need a real vacation, but if I take one in the next month or two, I might kill the Ada Initiative. So I keep going. I’m not at my best, but I just need to be good enough, for a little while longer.

I’m learning to appreciate what I can. My shabby-chic little Victorian-esque hotel in Chatswood has a balcony looking out on to what is to me exotic tropical jungle. I sit with my cup of tea and listen to the bizarre “oook-ook” animal noises and the “thwock” of the unknown form of sportsball taking place on the other side of the enormous eucalyptus trees. I eat enormous mangoes of some variety that never gets imported into the U.S. I wear perfume.

Inbox zero used to be a weekly occurrence for me. Now I am failing to even keep up with my work email. If all goes as planned, I’ll be able to catch up in March, maybe even February. I suspect a normal social life will have to wait until we’ve hired a part-time temp to do things like merge databases.

I’m officially on retransmit status on email: If it’s important, and I haven’t replied – go ahead and email me again. I’m on Twitter a lot, too. Things like @horse_ebooks take about the amount of time I have available for wasting time on the ‘net these days.

Cross-posted from Geek Feminism

I’m writing to ask you to donate to the Ada Initiative.

A year ago, a friend of mine was groped at an open source conference. Again. I’ve personally been groped twice at conferences myself.

But what shocked me most was the reaction to her blog post about it. Hundreds of people made comments like, “Women should expect to get groped at conferences,” and “It was her fault.” Many of these people were members of the open source community. Some were even prominent leaders – that I was forced to work with directly in my job as a Linux kernel developer! I realized I’d felt alienated, unwelcome, and unsafe as a woman in open source for many years. I was furious and determined to make a difference.

So I quit my job and co-founded the Ada Initiative with Mary Gardiner. We are the only non-profit dedicated solely to increasing the participation of women in open source, Wikipedia, fan culture, and other areas of open technology and culture. Currently, women make up only 2% of the open source community, and 9% of Wikipedia editors, down from 13% a year ago. We want to change these trends.

You can help by donating or by spreading the word about our donation drive now:

Help spread the word

We’re proud of what we’ve accomplished already. Since our founding in early 2011, we helped over 30 conferences and organizations adopt an anti-harassment policy, organized the first AdaCamp unconference, provided free consulting on high-profile sexist incidents, wrote and taught two workshops on supporting women in open tech/culture, and ran two surveys, among other things.

http://adainitiative.org/what-we-do/

We need your help to achieve our upcoming goals. The Ada Initiative is funded entirely by donations. Without your financial support, the Ada Initiative will have to shut down in early 2012.

http://supportada.org/donate

Your donations will fund upcoming projects like: Ada’s Advice, a comprehensive guide to resources for helping women in open tech/culture, Ada’s Careers, a career development community, and First Patch Week, where we help women create and submit their first open source patch. You can learn more about how the Ada Initiative is organized and operated on our web site and blog.

Whether or not you can donate yourself, you can help us by spreading the word about our fundraising drive. Please tell your friends about our important work. Email, blog, add our donation button to your web site, and tweet. You don’t have to stand on the sidelines any longer. You can help women in open technology and culture, starting today.

I was at a Girl Geek Dinner last week, talking to a recruiter about the Ada Initiative and our new fundraising drive:

“So the thing that made me quit my job and start the Ada Initiative was when a friend of mine got groped at an open source conference-”

“NO! Shut up! That didn’t happen!” she says, utterly shocked.

“Yes, it did, it’s documented all over the Internet-”

“NO! I can’t believe it! Are you serious?”

“Yes, I’ve been groped twice at an open source conference myself-”

“Oh my god! Really?” At this point she seemed to start believing me and I was able to get in one or two sentences in between expressions of shock and dismay.

She went on to tell me how in college her boyfriend went to CMU, which is the university that achieved 42% female enrollment in their undergraduate computer science program (and later wrote a famous book about how they achieved that, Unlocking the Clubhouse). In her experience, women were always welcome and respected in computing, and the realization that it wasn’t like that everywhere was a complete surprise to her.

I’m so used to living with these facts that I often forget how shocking they are to people who don’t know about the dark side of open technology and culture. The cultural phenomenon that has the most potential to overcome all the old prejudices and oppression is doing worse than the mainstream “closed” versions in many cases – e.g., 2% vs. 20-30% women in open source software vs. closed source software. I don’t know the numbers for “closed source” encyclopedias, but only 9% of Wikipedia editors are female.

We’re working hard to change that. We believe that unless women are involved in designing and creating the Internet, it won’t serve women’s needs. Right now, there are 994 pages in the Wikipedia category “Female pornographic film actors” and only 58 pages in “Women computer scientists” – at the same time that many pages about important female computer scientists have been deleted for “non-notability.”

You can help change this by donating to the Ada Initiative today. If you can’t donate yourself, please consider telling your friends about the Ada Initiative donation drive.