Why the cobbles?

Originally posted 2023-07-03

I created this blog series as an outlet for my frustration with the FOSS community in General. Related to two very specific topics.

Accessibility and COVID risk at conferences.

What these two things have in common are disability and how by being outside the normal frame of reference, the FOSS landscape becomes hostile. Actually every landscape becomes hostile.

I grew up in a disabled household. I was able bodied. Because a member of my family required care, I was othered from the start.

But what I saw and didn't comprehend was the constant ableism that surrounded my relative.

Cobbles on the other hand were a constant hazard to their balance. On a good day, those cobbles were never a problem, well, that's not true.

My relative had to ensure their footing was correct every time. Energy was spent on ensuring that. They'd lost their sense of smell from their life changing event and tried working in an office. Until they fell over and hit a desk hard. For the rest of their life their ear was shaped like an elf's. Which 5 year old me thought was quite cool actually.

My point is that modern life and structural attitudes is incompatible with trying to exist as a disabled person. We saw this in the 2010s in the UK with Austerity.

Instead of people feeling that the disabled were a drain on society, suddenly that attitude came to the fore. The Government didn't listen to local doctors who saw their patients. Instead they paid call centres to claim that the person could work. In fact they should work, right now. This attitude reverberated out into the general public.

All those times when my relative got help from the state, or we were loaded onto a plane ahead of folks, I suspected there was resentment. But to have it confirmed and that whole infrastructure turned against family was stressful.

It was a shock to see similar attitudes in FOSS. First of all with the general state of the web with accessibility, including FOSS projects. But when folks ask for some work on accessibility, for dignity. There's a disappointing level of push back.

The web is awash with cobbles, in the form of captchas, of hard to read web pages, anxiety inducing web pages. With very few websites or browsers respecting how people set up their browsers to use the web. Or even to use software on the desktop.

It's exhausting to use the web, it's exhausting to have to explain to yet another developer why their site isn't accessible.

Now I'm disabled with LongCovid. It's mostly mild. Well I say mild, allergic reactions are worse now. I have a temperature sensitivity now that actively affects my cognition and stress levels. Doing laundry is exhausting.

All the mental scripts I had for navigating life are gone. Over 40 years of learning how to interact with people. It's scrambled now. It's exhausting dealing with people. How on earth can I ever work in an office again. I'm terrified of having another COVID infection.

The depression is pretty new as well. I've had periods of being low. But having it constantly for weeks and months grinds me down.

I like people. I used to love going to conferences.

But now, if I go to a physical conference, I'll have to think about where to stay. Where to eat. Flying's out, not just from an environmental point of view, but the risk of catching COVID again. Or another SARS based corona virus, or bird flu, when it finally mutates.

I don't trust people to help me by masking up. In the same way I learned not to trust people claiming to help my relative when they fell over. My husband and I stick out like sore thumbs, we are the only ones on the once a week trip to the shop who wear masks.

I'm being other-ed, sticking out much like I did with my disabled relative. Or when people made fun of me because I needed to make my eyes bigger to stretch them.

All these little individual cobbles, now wet because of LongCovid.

Life now is a series of wet cobbles, I and other disabled folk have to navigate.

I'm exhausted. Life is never going to back to normal and the outside world is hostile to us. How are we meant to exist in this?

I'm not sure the outside world ever wanted us to.