End-User Experience

SelfCareRevelation
<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.

Continue reading “End-User Experience”

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Messages in a Bottle #12: Six Degrees of Kevin Broken

CW: descriptions of systemic abuse, abuse statistics, speaking out about past abuses

This Message in a Bottle was literally previously a published blog post in March. But, the original version of the post was first password-protected, because, at the time, I worried that putting it out there simultaneously would somehow undermine the credibility of what I was attempting to accomplish in the non-blog world.

Now, a couple of months have gone by. We’ve received our reply, and our story, for whatever it is worth, is in the hands of one of those task forces charged with “getting to the bottom of things” in hopes that the failures of the 9th Circle of Hell will at least teach the East Coast how to clean up their own act for vulnerable populations. Will it accomplish anything? I don’t know. I’m justifiably jaded, and I know that systemic abuse within and by state-funded agencies across the nation has no easy solution. But, injustice anywhere is injustice everywhere. So, in theory, taking action anywhere is metaphorically striking a blow against the 9th Circle of Hell, as well? Or something like that? I don’t know. But, my Partner and I tried offering our experiences as an example of what never, ever should happen to those in care facilities in any state anywhere in the U.S. – or across the globe. 

May is Mental Health Awareness Month. Individuals with disabilities experience sexual assault and other abuse at rates at least seven times higher than the general population – making them the most at-risk population – even before rates of assault in institutions and other state-funded agencies are factored in. As this NPR article states, accurate statistics can’t even begin to be reported for such places. I know this first hand – because I’ve tried to get them – so I concur that the true rate of abuse and neglect are, in reality, almost certainly even higher than what is reported.

I also know that PTSD is an incredibly common response to traumatic experiences such as abuse and neglect. PTSD is a common mental health challenge across demographics, and individuals with disabilities aren’t somehow immune to it as they experience these unconscionably high rates of abuse and neglect. PTSD is a response to trauma, and individuals with disabilities experience a disproportionate amount of trauma. It is no surprise that many disabled individuals develop trauma triggers and PTSD as a result.

It is unconscionable that there isn’t more awareness that a more frequently traumatized population will also be more likely to require sensitive, trauma-informed mental health care from caregivers and agencies. It is even more unconscionable that – rather than getting such care – that those same trauma responses that Mental Health and Trauma Awareness campaigns try to normalize within the wider population are still dismissed in individuals with disabilities as unexplainable, meaningless “bad behaviors.” Then, these “bad behaviors” are not only misattributed but are commonly used by agencies as an excuse to evict clients who have already been through plenty (quite possibly at the hands of the agency trying to use their trauma responses to evict them in the first place!) 

For Mental Health Awareness Month this year, I want to remind people that the toll taken on my own and my Partner’s mental health by the evil actions of the 9th Circle of Hell in 2018 were also extracted on my sibling. I may have to be the one to tell the story because the system isn’t really set up to give my sibling a voice, but I want to be clear to people that just because I am the one writing the story, that does not imply that I was the only one scarred by the events of 2018. I’m just the one with the most current capacity to shove it in the system’s face in an attempt to create change.

The post below was written as I worked through my own trauma responses in an attempt to use our experiences in 2018 to shove such awareness into the faces of some of the members of the “system” on the East Coast. I write most frequently about Hell itself, but I am well aware of the East Coast’s failings in the same areas that have recently come to light in a 2019 report on my current state’s “behavioral health” system. I don’t know if my story of being spurned by the East Coast while desperately seeking a way out of the 9th Circle of Hell in 2018 will ever help reform either state’s system, but, well, I keep banging my head against the wall.  The East Coast asked for personal narratives of systemic failures.  I’m perfectly fine with both relaying the literal Hell we went through last year and how if any of their state services – which I guess were busy continuing to fail in the ways outlined in that recent unpleasant report of their own – had gotten off their behinds when I requested emergency placement, we might have been spared several iterations of last year’s Crisis. I also blame the East Coast for failing to be the resolution to the Crisis the 9th Circle of Hell created.

Shockingly, the One-Horse Townhouse remains a genuinely decent-seeming place. I’m as jaded as they come, and I am forever waiting for the other shoe to drop. But, at the moment, they seem like a rare exception to the literal nation-wide travesty of care. I won’t claim anything other than blind luck led us to them. I mean, in the 9th Circle of Hell (as in too many other states) there is no way to look up whether and how many prior abuse cases a provider has had. So, clients literally have nothing but blind luck to go on when attempting to keep themselves or their family members safe from those sky-high abuse rates I described above.

Maybe sharing the trauma echoes I had to work through in March in an attempt to create broader awareness of the trauma and mental health needs of disabled individuals across state systems will somehow up these odds for families. Or, at the very least, maybe it will at least raise “awareness” during Mental Health Month of the need for trauma-informed mental health care for one of the most marginalized demographics this May as long as high abuse rates remain their norm. 

Continue reading “Messages in a Bottle #12: Six Degrees of Kevin Broken”

Coat in the Act

funny-Ironman-Tony-Stark-heart
<Image>: Captain America says to Ironman “Big man in a suit of armor…You take that away and what are you?” Tony Stark replies “Stark naked!” I have not seen Endgame yet, so this meme is not permission to spoil it!

Some people are aware of everything, including their clothes, to the point that they can instantly pick out their generic solid-colored raincoat from among all others. There may be many like it, but that one is theirs.

My Partner is one of these people. He’s acutely aware of color shades and such minute (to me) details, even as he simultaneously sports a minimalist wardrobe of 5-7 pairs of solid-colored slacks and shirts that fit him comfortably that he buys in coordinating shades and wears repeatedly. He always recommends I go similarly minimalist, but I still fear the ever-present career double standard for women. Drawing overt attention by dressing outside the feminine norm feels too exposed and risky. It’s not as under the radar, unfortunately, for neurodiverse women to fully embrace comfort and simplicity over fashion, even if my diminishing numbers of spoons from various diagnoses have gradually pushed me in that direction out of necessity. Guides to minimalist female wardrobes still talk about wearing a small number of items in so many ways that it looks like a month’s worth of unique outfits. This implies that having a month’s worth of unique outfits is the norm. At that point, it seems easier to just own a full month’s worth than to add daily mental gymnastics to combine a much smaller number of pieces to look like more into my morning routine. Committing to the laundry to stretch fifteen items of clothing or some such into a month’s worth is also pretty daunting in and of itself.

I wish that I could buy a small set of slacks and shirts and just wear them repeatedly instead of having to Rube Goldberg them. The idea of a uniform as my “personal brand” is incredibly appealing. But – though I haven’t fully embraced the uniform idea – I have a few all-or-none clothing awareness items that matter to me. I am clueless about fashion, but I have meaningful criteria that help tamp down that panicky, overwhelmed ADHD choice paralysis whenever I have to go shopping. For instance, I picked out a new spring raincoat coat recently. The inner lining had to not feel “sticky” when the plastic touched my skin. I hate the sensation of sticky above all other sensations. It had to have pockets – which too many women’s clothing items don’t – and those pockets had to zip closed or anything I put in them would inevitably fall out and be forgotten. It had to be sufficiently waterproof that – if and when I inevitably left my umbrella somewhere – it could do a decent job without any umbrella adjunct, yet it also had to be lightweight enough to fold up and live permanently in my bag without hurting my EDS joints until needed. It also had to be a simple, solid color, because anything brash and “stylish” can’t be worn until it wears out without drawing attention. I’ve had these criteria for coats for years, so, by this point, I have learned to look first at North Face and Columbia Sportswear and only seek further if they don’t have anything suitable. The winter coat that I have had for almost a decade and probably could pick out from a lineup is by one of them. (I’d have to go look in my closet to remember which, though, so maybe that still says something!)*

I went to a conference last week that was close enough to commute by train and return after one overnight. The northeast has been receiving a lot of rain lately – enough that I remembered and needed both the raincoat stuffed in my bag and an umbrella just to be safe – and conference goers were universally soaked by the time they checked in at the front door. The conference did not, however, have a formal coat check. It only had a self-check rack with a sign stating not to leave anything valuable since it wasn’t manned.

I normally keep my coat and other items with me in such instances. If I see a line for a coat check at the end of the day, it will remind me of the little slip in my pocket and the fact that my coat is at the check as well. I won’t notice a self-check that people walk up to in ones and twos. Without even a coat-check sticker prominently stuck to – or used as a bookmark – on my conference program to remind me, there’s too much of a chance I’ll leave without my gear if the weather changes while I’m inside. (I’ve also lost enough conference programs during the program itself, because I have a gift, that the end-of-day line for a manned check is still a necessary backup reminder.) But, there was little I could do this time. I was soaked like the others, and I assume they’d have found it rude if I dripped on my neighbors in the cramped auditorium seating.

I thought I was incredibly proactive in handling my conundrum. My umbrella was a generic shade of dark navy, and my coat was too new to be confident I’d recognize it. So, I made sure to discretely snap a picture of the rack orientation of my coat and to loop my umbrella over the same hangar. Nobody else seemed to be doing this, presumably because this would allow their umbrella to drip onto the inside of their raincoat. They used the available shelf to stow their umbrellas. I thus figured I had plenty of memory aids to identify that coat I could remember so many specific minor details about but that I still wasn’t confident I could pick out of a lineup.

It probably would have worked, too. I waited long enough for the coats to dry then returned over lunch – before the rush of people at the end of the day – to retrieve my coat and umbrella before I could a) forget about them entirely or b) be thoroughly embarrassed by being caught staring intently at my visual aids to locate my stuff.

The coat rack looked nothing like it had in the morning. Some “helpful” person had straightened it up in the meantime. Every. Single. Umbrella – including mine by default – was neatly stacked onto the rack. Every umbrella looked exactly the same. There was no grey raincoat at the end I’d originally hung it. There were, however, four total grey raincoats in my size from North Face that had their trademark dry weave lining, zippered pockets, etc. I first discreetly rifled the pockets of all of them in case business cards, chapsticks, maxi pads or any others of the dribs and drabs that tend to accumulate in the pockets of women with ADHD could act as tell-tale markers. The pockets were all empty. My own coat was still too new for me to have had time to mindlessly collect.

The coats differed in their shade of grey, however, when I looked at them in the light. Thank goodness. The umbrella was much harder to identify until I finally remembered my current one had a push-button mechanism to launch it. Only one of the many identical-to-my-eyes dark navy specimens had an automatic feature. I found my stuff without being caught looking as lost as I felt, folded my coat up and stowed my items in my bag. At the end of the day, I put them on and got a lift to the station.

My Partner looked me over when I got home and said he liked my “replacement coat” for the one I’d lost on my trip better than my original. The “lighter shade of grey looked good with my hair.” FML. If my Partner could instantly tell it was a different coat, I guess I’m not as perceptive as even I thought I was. I trust his attention to detail. If he says it’s a different coat, it is a different coat…

How in the world do I attempt to call the organizers of a past conference and explain that I walked off with a similar – but apparently not nearly as similar as I thought – coat and didn’t realize it until someone else noticed? Is there even a mechanism to report lost and found, or was their blanket warning not to leave any items we couldn’t afford to lose on the coat rack tacit admission that my “borrowed” coat will remain my coat from now on? Is there any hope that the owner of that coat also can’t tell the difference and is even right now blissfully wearing mine, equivalently unaware of our switch?

I guess it’s time to start writing my name in my outerwear and assuming anyone examining my coats closely enough to see it would, like me, be grateful in the moment for any clear visual signal that the coat they are examining is not theirs.

For whatever it’s worth, though, my Partner-who-notices-everything did confirm that I successfully returned the same umbrella that I left with. I may be an unintentional coat thief, but I’m not an umbrella thief as well. That may be the fashion equivalent of shooting the sheriff, but not shooting the deputy, but I’ll take what I can get…

*P.S. – my winter coat is actually by Merrell. My Partner has one from Columbia. But, after asking him, my Partner at least confirmed my previous rain jacket was by Columbia and I was correct in my memory that the jacket that I unintentionally swapped really was by North Face. I had the brand of the real coat right, if not the color. And yes, for anyone wondering, I do force my Partner to come shopping with me. He’s much better at this than I am, even though he himself only ever wears slacks and shirts.

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

Work/Life Int-egg-ration

I used to think my boss’s term for work-life imbalance was something he made up. I don’t know why I thought this, other than that he always said it so confidently and without attribution. I’d never have had the confidence to pass off a saying that often without crediting the original source, so I just assumed. Thus, I figured I could never share it on my blog because it would be too personally identifying. I don’t know why I never just googled it. If I had, I’d have established long ago that the term isn’t something he came up with. He cribbed it from a Forbes article – or possibly Berkeley’s MBA program – and just takes it to illogical extremes.

Why should I have assumed, given that he liberally borrows his own employee’s work at conferences without remorse, that he’d somehow do otherwise with awful aphorisms? (Of course, the way he adds on that we should all be so grateful for our “fulfilling” job that we are willing to work many nights and weekends to hit our growth goals even as he screams at us might be considered ‘original!’)

There are two kinds of people who live permanently only in the “now” or the “not now.” Time blind ADHDers – and bully bosses. How does one tell the two apart? Well, in my experience, folks with ADHD will inevitably blame themselves for any missed deadlines or forgotten important project components – usually to the rejective sensitive extreme – while self-absorbed bosses will simply assign major deliverables with less than twenty-four hour notice to employees whenever they suddenly realize that they actually need something for a conference that they could have requested weeks ago if they cared at all about the “life” part of “work-life integration.”

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Improv #14: Sing the Moment

*Knock knock*

“Who’s there?”

“The Perfect Moment”

….

….

“The Perfect Moment who?”

“It’s too late. You already missed it.”

I could use this post to say something vaguely motivational like “feel the fear and do it away” or that it’s possible to “seize the day,” even with chronic physical or mental health challenges. I could use this post to talk about FOMO or the crash that occurs when the future calls in a lien on the present in payment for spoons borrowed against it. I could do any of those things, but I won’t. I may be the only guru I trust, but I only (mostly?) trust myself because I don’t attempt to say the kinds of motivational stuff even I can’t listen to without rolling my eyes. I still prefer snark over spirituality.

Also, I know that I couldn’t back those topics up if I tried. I mean, how could I plausibly talk about seizing a moment when I have no idea what a moment even feels like?

Did I ever mention that researchers out there have amassed evidence that, at heart, ADHD is a neurologic deficit in time perception? Our sense of time is non-neurotypical, to say the least, and totally gone at worst.

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Where’s Whoopsie #18/Subway Sociology #5: Mixed Martial Arts

First, for those wondering. The bad news is that I don’t have a new job quite yet. The good news is that that is because the interview process keeps getting longer each time I go through it. I’m not finished with it yet, but I’m also not out of the running yet, either. There are more stages than I expected. I’ll be making that longer commute at least one more time before I can determine if I’ll be making it permanent.

I’ll use that “at least one more time” as a chance to gather more data for my current hypothesis that one particular section of the subway line that I would need to take as part of that new commute truly has a higher likelihood of entertainment value than the earlier sections of the same line that I used to take daily. I find that, including this post, I have now written about the actions of my fellow passengers – and/or other ads and experienced events – five(!) times. These points of data make a beautiful line (bonus points if you are now singing that song along with me), and, for a would-be daily rider who is also a data analyst, a beautiful new series for my blog. I’m retroactively subtitling the previous four posts about commuting “Subway Sociology” entries #1#2, #3 and #4.

One hypothesis is that this more-northerly-than-I-previously-commuted section of the line just has more interesting passengers in general. The null hypothesis, in turn, is instead that I have just needed more distraction from my own brain while riding this particular section of the subway – and thus have been more inclined to notice the fascinating actions of my fellow passengers while riding the rails – than while making other trips. I’ll need more data to truly determine, but, either way, my fifth unofficial/first official foray into subway sociology was a welcome distraction during what would otherwise have been a solid hour for the bully-in-my-brain to psych me out before my last interview.

It takes a lot of confidence to do anything other than stick headphones in your ear and avoid eye contact with fellow passengers on a subway. It takes a unique level of confidence to do double duty during your commute and incorporate your daily workout into it as well. Yet, one of my fellow passengers on the way to my last interview had the brass balls – er, brass bars – to do just that.

Continue reading “Where’s Whoopsie #18/Subway Sociology #5: Mixed Martial Arts”

Improv #12: Funny You Should Mention That…

memorial quotes for son | Share Inspirational Picture Quotes About Life - On Facebook
Image text: “Pretending to be normal, doing your best to act like you’re ok, day after day, week after week, month after month, it’s just so exhausting” over a woman crying.

For anyone wondering, the Thanksgiving turkey turned out great. Cooking a turkey is like cooking a whole chicken. If you want to practice before next year’s big day, cook whole chickens. Then, do the same thing on Turkey Day for about 3-4 times as long. (Also, turkey enchilada stew and buffalo turkey sandwiches feel much more like a “change” from a week of all-turkey, all-the-time than the standard turkey pot pie and stews that are usually recommended.)

Unfortunately, my Partner sent our only photos to his parents when he last spoke to them. Now there’s a remote chance they could someday identify me as the author of this blog if I recycled those pictures. I used an herbed-butter rub and baked the bird with roasted vegetables for aromatics. The pictures, through the magic of Google image search, could theoretically be vaguely identifiable. Every picture of the same natural feature looks about the same. (I did some digging to prove that to myself before posting Iceland pics last year.) As long as I pick out different photos for his parents and my blog, I can share travel photos here and still keep my worlds separate. But, I can never share the same photos, or my worlds might collide, right?

Not really. All Thanksgiving turkeys also look about the same, so there’s nothing truly stopping me from posting the same pictures here except my ingrained need to keep my worlds separate. There’s nothing except my ingrained need to control to whom and in what situations I reveal just how not normal I am. I am still masking in most of my life, and, though it sucks, I don’t think I’d know how to fully unmask in daily life if I tried. Unmasking hasn’t been safe in childhood, in my workplace and in advocating for my neurodiverse sibling within a regressive, systemically abusive state.

Continue reading “Improv #12: Funny You Should Mention That…”