End-User Experience

<Image Text>: “Most People have ‘Ah ha’ moments. I have “Oh for fuck’s sake, fuck this shit” moments.” Note: this is a pretty apt description of the process of me finally accepting that I’m better off actually taking care of myself rather than letting the opinions of others prevent me from benefitting from readily available accessibility aids that would save me critical spoons.

Movie theaters have become events in and of themselves. One that opened near us recently has a full restaurant inside of it where patrons can eat at traditional tables before the movie – or order their carnitas nachos to be served at tables inside the theater while they recline in their heated leather seats. The theater also boasts gourmet versions of standard guilty pleasure treats made with all natural, non-high-fructose-corn-syrup ingredients like white raspberry slushies and cheddar and caramel popcorn.

And – although they offer treats with more FODMAP-friendly ingredients that make me less likely to need them in a hurry (if you know what I mean) – they additionally offer bathrooms with marble stylings and individual sinks each equipped with their own personal accoutrements and air dryers so I’m not missing even more of the movie than necessary getting stuck waiting in a line when I’m hoping to rush back to my seat after an inevitable potty break during the three-hour-long Avengers: Endgame.

All of this luxury comes with a price tag roughly 20% higher than a standard 3D theater without these little extras. My Partner and I only see a handful of movies in a theater each year. We figure for those movies we judge worthy of a night out, we might as well make it a true experience. (Also, those bathrooms. Seriously. That alone is worth 20% more to any spoonie with GI issues as part and parcel of their diagnosis…)

Unfortunately, the first time we saw a movie in our new elaborate dine-in theater, the experience was missing one detail that further explains why, in the end, it hasn’t only been the price tag that has limited the number of films we’ve seen in a theater each year. Closed Captioning.

We determined years ago that even if a movie was worth seeing in a theater, it was still only worth seeing in a theater with assigned seating and reclining seats. The “heated” bit is a nice little upgrade at our newly opened theater, but knowing I am guaranteed a comfortable seat that won’t trigger a pain flare and is positioned so that I can actually see the movie within the optimal window of eye convergence for my stupid Ehlers-Danlos Syndrome eyes that – while they haven’t yet again rendered me fully blind for a week like they did last year thanks to a neuro-ophthalmologist who knows how to handle subluxing eye lenses – continue to decline in their actual ability to work without mechanical intervention. I don’t pay to torture myself as a general rule.

Or, well, I don’t pay to torture myself physically. How I treat myself in my own brain is another matter. And, I did kind of accept that the price of movie spectacle, in general, was that I’d have to work a lot mentally harder than normal to follow the conversational threads of the characters amidst the big booms and other magical effects that tend to characterize the action, fantasy or sci-fi movies we judge worth the price of admission.

One of the common side “benefits” of ADHD is auditory processing difficulties. I “catch” a lot less of what is going on if I have to listen to something purely auditorily vs. if I can read it. On a good day, I can read a 1,000-page textbook in a day in hyperfocus and understand it. But, on that same day, I could simultaneously try to watch Captain America: Civil War and miss the crucial detail of what happened to War Machine because it happened during a big battle with lots of voice-overs that are hard to place within the aforementioned big booms happening all around. I watched Age of Ultron, Infinity War and much of the rest of the Marvel Cinematic Universe first in the theater than again later at home with closed captioning on and caught additional details my brain just didn’t put together in the theater the first time.

I keep closed captioning on for t.v. shows and home movies continuously. I have for years. I learned recently that this is actually a fairly common phenomenon for individuals with ADHD and other diagnoses commonly known for auditory processing and/or integration disorders and in general. (My apologies to vloggers. Whenever someone experiments with vlogging but doesn’t include a transcript, it’s a coin flip whether I can watch their post based on honest self-reflection of how likely I am to be able to follow it without written cues on that particular day at that particular moment.)

I never thought about closed captioning at the movies. I’ve seen shows labeled as “open captioned” and thought wistfully how I’d love to see those. They inevitably are always at obscure times like 2pm on a Tuesday, which working adults can never hope to make. They tend to also have the unfortunate distinction of being cross-marketed as the “bring your children to the movies” showings. If I already have trouble processing auditory dialogue amid flashy surround-sound effects in theaters with other adults only, I can only assume I’d be pretty much screwed if I suddenly had to contend with an additional army of children, even with captioning to help me out. (Did I also mention the fancy movie theater has separate “child-friendly” and “quiet-time” theaters so that I can minimize distractions even further now?!)

Thus, I saw my first movie at the fancy theater without closed captioning, and I felt like even though I was paying attention I missed details as per usual. And, as per usual in our relationship, it was my Partner who asked the obvious question, “Is there any option for those with auditory processing issues other than literally taking time off work to fully enjoy Endgame in the theater?” I am rather terrible at even thinking to ask, “Could my life be made easier?” My Partner, however, is remarkably attentive to the care and feeding of Lavenders. He determined that while the Americans with Disabilities Act hasn’t been the panacea one might hope – especially when dealing with the 9th Circle of Hell – it did offer the neurodiverse a little-known gift in 2016.

All movie theaters – not just the fancy ones – are now required by law to offer individual closed captioning in all auditoriums. There is no surcharge, and they fit in standard cup holders. (In the fancy theater, using the cup holder for a closed captioning device doesn’t even preclude the ordering of free refills on those gourmet slushies, as it also has individual tables for each seat. I may be just a tad obsessed with those slushies, btw. It seems almost impossibly indulgent to see a movie without having to sneak in safe food or ending up with a mid-movie GI emergency!)

I’d never heard of this ruling. But, even if I had, I’d probably have reflexively determined – if left to my own devices – that it wasn’t for me. I can hear, just not always understand, and who really cares about that, anyway? If I can hear the attendant’s reply well enough after I ask for the device, I must either be faking my need for it or just revealing I’m “stupid” by requesting it in the first place, right?

I never considered a mobility device until I saw first hand how it makes life more livable for other spoonies. Now, I’m in the odd position of getting older with a chronic illness that typically gets worse over time and yet regularly finding myself in less pain than I was in for most of my twenties. Because, well, I really could have benefited from ring splints, mobility devices, physical therapy and all the rest in my twenties, too, but I was undiagnosed and hated myself. Even though I’m older and my EDS is objectively worse, all those little elements of chronic illness management I was too self-loathing to pursue in my twenties – as I consistently downplayed my own pain – are now things I embrace. And, the result is that a more advanced – but managed – chronic pain disorder like EDS is subjectively less painful in my thirties than that same disorder – less advanced but unmanaged – in my twenties. If my eyes weren’t decompensating more rapidly than most of my joints, I might even say I’m at a better overall place illness-wise than I have been for most of my life, now that I’m not being too stubborn to take care of myself. I can at least say I’m at a better place on the average daily pain scale.

Hindsight is 20/20. (Okay, not really, because my eyes have been one of my most severely affected collagen-containing body parts my entire life. I haven’t had 20/20 eyesight since I was old enough to be given an eye exam! But, you get the point…)

I staged a serious internal intervention with the bully-in-my-brain about the logic of it being fine with paying a 20% surcharge to “enjoy” a fancy theater and then struggling through the three hours anyway because it would be “embarrassing” to ask for a closed-captioning device even after my Partner had discovered their existence. Isn’t being penny wise/pound foolish actually more “stupid” than just taking care of myself?

Thus, I (well, my Partner because I was still afraid to ask for it) obtained my first ever closed-captioning device to use during Endgame recently. For anyone else considering it, I took a picture below. It made my fancy movie theater experience significantly fancier – and a much better end(game)-user experience overall – than seeing Endgame in that same theater without it would have been. Two thumbs up. Would highly recommend to anyone with any sort of auditory integration difficulties.

Having thus been reminded (again) how much better my life is when I embrace self-care and assistive devices instead of perpetuating my own internal stigma, I will add that it is crucial that we also protect and strengthen external landmark inclusive legislation such as IDEA, the ADA, Section 504 of the Rehabilitation Act of 1973, and the Assistive Technology Act. They have been under attack by the Betsy DeVos’s, the Drumpf’s and other assholes who have been seeking to systematically strip them over the past three years. Yes, they are far from perfect. I’ve cited them repeatedly in my ongoing battles with the 9th Circle of Hell and repeatedly seen my arguments fall flat. Yes, it is shameful, when I think about it, that it took until 2016 to even obtain such simple and beneficial technology as personal closed-captioning devices in theaters universally. But, such legislation remains the only reason that any progress has been made. And, ultimately, things won’t be better in our endgame unless we first arrest their current regression in the present.

<Image Description>: My individual closed-captioning device I used during Endgame. Note: I still had the reclining seat up as I took this picture. When I later leaned back, the angle reoriented such that the closed captioning device rested underneath the screen. I was eating my carnitas nachos when I took this picture and it was neater to have my seat up as I did!

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Need a recap of anything I’m talking about in any post? Check out the Glossary of Terms.