I wrote this in the wee small hours this past Sunday morning while hanging out with my roommates for the last night of the Playground Conference in Toronto.
A few weeks ago, I had a really nice conversation with my husband. Don’t get me wrong – 98% of our conversations are nice. This one was different, though.
First, some backstory
T has never really had to encounter physical health issues until he met me. Things like accessibility weren’t things that he needed to think about on a daily basis. Even when we were early on in our relationship, I was ‘good enough’ to go without those accommodations – and, honestly, far too proud to use them.
It wasn’t until we moved in together that my everyday health really got bad enough for him to see it. Shortly before that point, I had the worst flare-up of my SJIA since childhood – something that’s thankfully yet to be topped. I had a combination of my rash. It’s a salmon pink rash that usually will show up in the evening around 5 and then again before bed.
Fun fact – this rash is itchy for 5% of peeps. Of course, I would be in that smaller percentage. On top of that, I was also dealing with intense hive-like welts. These can be my SJIA rash, but it only was like that when I was extremely ill in childhood.
I wound up stuck in my apartment for a while dealing with this pain and discomfort. I used icy hot for the first and last time due to the inability to wash it off my hands and use of masturbation for pain control. It just felt like the universe was adding on too much shit.
Long story short, the last thing I wanted was for T to see me like that. I didn’t really see him for the worst of that time. It wasn’t that help wouldn’t have been useful, but I was also aware that it would be terrible to see. I could barely move my fingers, wrists, ankles, and toes. My face swelled to the point where I didn’t look like me.
From that point on, I became a stickler for accessibility.
Fast forward
A few months ago, I wrote the piece about adding image descriptions. As I say in that post, it’s something I think more and more about as I grow older. Already dealing with worsening vision on top of a history of iritis and anterior basement membrane dystrophy, I think about often what will happen when my sight continues to decline. From a very selfish standpoint, I know that I want to be able to imagine what my niblings look like as they grow and accomplish so much.
After I wrote that piece and had been circulating it, my husband stopped to consider the work involved with putting image descriptions up. T asked if there was any specific way you’re supposed to compose descriptions, so I gave him the short verbal version of the post. While I was grateful he asked, I thought it was more about the fact that I had written about it that prompted these questions. After the last few years, I’ve grown less hopeful about reasons behind people’s questions – even those closest to me.
We’re very active in podcast-related facebook groups. As T becomes more active in these spaces, I’ve noticed his focus on helping others grow. He has always been a helpful and very kind dude, but it’s becoming even more pronounced. I like to think that we bring out the kindest and more passionate parts of each other.
Sometimes the two notions fight each other. Being passionate sometimes curtails our ability to be kind because, for example, anyone can understand why a parent might want to park closer if they leave children in the car. However, passion (and law) says parking in an accessible spot to do so without an accessible parking permit is wrong.
Also, yes, this really happened a few years ago at one of our favorite pizza places – after an ice storm. Yeah, the face you’re making? Same.
One of the reasons why people call me a bitch or asshole is because I don’t hide my passion for the comfort of others, especially when they need to understand how harmful they’ve been and/or if people don’t share the same marginalizations. That can make it much harder to understand and even empathize.
Honestly, when T asks me questions about accessibility stuff, I geek out. It’s like asking me about sex. Hello! So, naturally, I talked a lot about the description question.
The proudest
T began to use image descriptions regularly in groups. He is working on being more accessible, not just because I think it’s good and needed but because he totally gets it. A few years ago, he had Lasik to correct his vision. I think he’s been more mindful about eye stuff ever since.
My favorite thing is that T does this even in spaces I don’t regularly go. There is one FB group for a podcast we both love that I don’t regularly visit because items from racist and TERFy pages get shared. Upon bringing up concerns, I was told that the content itself wasn’t the issue so why would it matter where it came from.
Again, that face you’re making? Like someone just farted right under your nose? SAME.
Anyway, I began to disengage with the group itself because I knew things that brought up harmful feels would be shared. T still adds descriptions in there, even though he knows I probably won’t see it.
Why are you talking about this? It’s 12:30 AM at the end of Playground. You should sleep before your 12-hour drive tomorrow.
This feels like a humble brag, but it’s more than that.
It took me years to feel like T really understood what I meant about a lack of accessibility. Even then, it’s different than him going through these things and truly getting it. Our mental health issues are similar enough that I feel witnessed on that while being able to provide him support, too. The physical limitations are just hard to fully grasp if someone doesn’t go through that.
While sharing a tweet with my roommates that T had put into a group, I nearly cried. Part of it was con drop and the post-exertion stuff. I’m sure part of it was wrapped up in missing T and being excited to see him once I get home. Mostly, it’s about T still being kind T even when I’m not home.
We all change a little bit depending on the people we’re around or situations we find ourselves in. This is the first time I’ve traveled in 2018, though, and the first time I’ve been away since T started writing these descriptions. I think part of me assumed he was only doing it to flatter me – and seeing that’s not the case was really necessary. It was uplifting.
On top of that, I was just really touched by the idea that I got through to him on so many things. It’s hard for the two of us to talk about heavy emotional things and, honestly, I don’t think about what things to discuss based on things we need to ‘fix’ or whatever. I don’t and would never give T a honey-do list on changing for me.
After talking today to a room full of amazing chronic peeps and allies/partners, though? It was like the icing on the cake.