Jumping Off a Dev Career Cliff

'close up of a herd of zebras'

🦓 May was Ehlers Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder Awareness Month! 🦓

To wrap things up I'm writing this more personal, but still career related post. Writing this feels a lot like submitting my first pull request as a new dev on a large public GitHub repo - like I'm jumping off a cliff on a zipline with tons of people watching.

Until the last few weeks, I haven't posted anything about being a disabled developer. It's taking a huge risk because I'm a new dev, and job hunting is hard enough right now without having to face all the conscious and unconscious social biases and stigmas of being disabled.

However, it's tiring trying to hide a huge part of who I am, and I'd love to share tips and tricks on how I make my developer workspace, VS Code, and home accessible. While many of them are essential for me, they're also great for other devs too. (And apparently for my cat Boo who's figured out how to get the bedroom Homepod mini to play music for him.)

Also, enough people in the dev community in Toronto know me in person and have seen me use various mobility aids, and that I'm going through the very long process of getting a wheelchair. It's an "active user manual wheelchair" with a power assist. ... Being a dev of course I'm going with the power assist that has an app! I'll also likely get it in electric purple and have removable Star Wars wheel covers.

So yes, I have:

  • Hypermobile Ehlers Danlos Syndrome (hEDS): I randomly sublux (partially dislocate) several joints frequently, my Achilles tendons are shot, and I can't count the number of times I've sprained my ankles. I've also been on what I call the "toddler diet" since January because my left jaw is out of whack - again.

  • Three types of dysautonomia - all those things that a body is supposed to do automatically, heart rate, blood pressure, digestion, ... mine doesn't so much: I'm at least a bit dizzy all the time, my blood pressure drops suddenly, standing still sucks, and the last time I had a blood test I stopped breathing - so no blood tests, IVs or surgery for me.

  • Mast cell activation syndrome (MCAS): An autoimmune where the immune cells (mast cells) in my connective tissue get together and throw random parties that look like severe allergic reactions or anaphylaxis for seemingly no apparent reason.

Having hEDS means that I almost always "look fine". Sometimes I can be really active and walk for ages with my Nordic walking poles. Sometimes I need knee and/or ankle and/or forearm braces. I rotate between using canes, Nordic walking poles, and crutches depending on what's injured and where I'm going. Other days when everything hurts, and/or I'm incredibly dizzy I just stay at home and code on the couch (and knit) with the cats. Coding is a form of meditation. I rolled out the version 2.0 of Yarn Help! on a particularly symptomatic weekend.

Dysautonomia means I can't ride in cars (the last time I did I had a three day migraine), and busy transit can be scary. After a particularly horrid bus ride last spring, I stopped the Bloor subway train and left Spadina station with Pete the Paramedic (Doesn't that sound like a great title for a children't book series "Adventures with Pete the Paramedic"?).

I love in person events, but until I have my wheelchair I have to really plan. I avoid rush hour transit and give myself extra time in case I have a flareup and am extra dizzy and/or do something randomly to one of my joints again. Because I have to be super hydrated knowing where the accessible bathrooms are is so important.

MCAS means that at events like TorontoJS BBQs and socials I bring my own food or just have a diet Pepsi. (Pepsi and coke are vasoconstrictors - so they help keep my blood pressure up.) . Soy and meat preservatives are two of my many triggers and I prefer to avoid drama - which belongs on the stage and screen, not in my life. MCAS can make career social events awkward, so it's awesome when people don't make a big deal about my not eating.

This Week Didn't Go As Planned -
So I Have More Time to Code

Right now, I'm off work at my part-time job for a week as a self-service cashier. I have a chair to sit on, so I get up when a person's put the wrong code for cucumbers in, or needs other help, then can sit back down. It's also a bit more technical than full serve cash because I'm responsible for six Windows machines. I typically work four, 5-hour shifts a week.

However, Mondays are our busiest days and half the staff didn't show up this week. I had to stand for hours checking out full serve people at one of my machines while running the other five too, to help my one other team member that did show up to work. (She's always totally awesome). Several joints have partially dislocated (subluxed), my hearing is wonky, and my vision is blurry (and the list goes on). It's not management's fault. They've been good at accommodating me, and the manager that opened at 7am stayed until after 9pm because of the lack of staff. Sometimes things happen.

However, it means I have an entire week to devote to coding on the couch with the cats, and being more involved in all the cool dev community things. I started a deep dive into React on Wednesday and am now working with GitHub Copilot - so I'm learning to code by talking!

Thanks to everyone at TorontoJS, more recently Women Who Code, and the wonderful dev community to being awesome and supportive and fun! I hope the articles and posts I share are giving something back.

I think I'm going to leave this here for now. It's a beginning of sorts.

PS ... Remember, accessibility isn't just about users who use screen readers. It's also about your fellow devs- and apparently our really Smart cats who can get Siri to play them music on our Smart Home systems.

So Why the Zebra?

Zebras have become the symbol for those of use with EDS/HSD.

Medical students have been told for decades “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis. But zebras do exist. Sometimes when you hear hoofbeats it really is a zebra.

Just like people with EDS/HSD no two zebras are alike. While we all have faulty collagen /connective tissue over symptoms vary widely. We have different types of EDS or HSD, our experiences vary (though sadly most of us have had negative experiences with the medical community and many of us have medical-PTSD).

Did you know that a herd of Zebras is called a Dazzle? So a group of people with EDS/HS is called a Dazzle too!