I’ve been looking for moments of joy recently, even though I’m not sure I should. 

The search for joy seems deeply inappropriate — maybe even offensive — considering how we are watching as the world plunges into despair, hardship, grief, loss and trauma. Yet I find myself thinking that reminding ourselves and each other about joy — even those small pockets of joy that may not feel worth noting — would help all of us increase our capacity for hope and empathy.

Being disabled, it’s easy to get caught up in the trap of thinking that any happiness I experience should be completely separate, maybe even disconnected, from anything related to disability. But what if the way I experience joy is intrinsically linked to my experience of being disabled?

As an autistic person, I’m well aware of the stereotypes that exist about autistic people, one of the most common ones being that we are uncaring and unfeeling “robots” who lack basic human empathy. This misconception — which has existed for decades, even among some (miseducated) professionals — creates a gap in how people look at, and recognize, the emotions of autistic people.

The misconception sets up misunderstandings when, say, I respond to tragedy by fixating on a favorite TV show or sports team, in what is actually a bid to balance intense empathy with moments of joy. To close that gap, we need to counter the myth itself, by showing how our vast capacity for emotions — specifically joy — is deeply intertwined with our empathy.  

I’ve been in several interactions with maybe well-meaning (but ill-prepared) people who will spend one breath complimenting my insight into my (and others’) emotions. Then they’ll spend their next breath either becoming impromptu diagnosticians deciding I cannot possibly be autistic, or trying to congratulate me for how I “don’t seem autistic and that’s a good thing.” There seems to be an expectation that I will have and display just the right amount of emotion and sensitivity, but I don’t know what that amount is. No one has ever told me until after the fact, when I’m told I’ve done it wrong (again).  

It takes two to miscommunicate

In 2012, British psychologist and sociologist Damian Milton, who is himself autistic, coined the term “double-empathy problem” to expand upon and describe a theory that looks at the role of empathy (or the lack thereof) in the context of conversations, particularly where a miscommunication occurs. Milton rebukes the myth that the fault for misunderstandings and miscommunications falls on the shoulders of the autistic person, simply because they are autistic and supposedly “lack empathy.” Instead, Milton theorizes that the problem is a miscommunication on the part of both people in a given interaction. He says that the issue is as much about the autistic person misunderstanding as it is about non-autistic people misunderstanding. 

This theory gives me a sense of relief and sows some hope: Maybe once it gains traction, misunderstandings and miscommunication will go from being “an autism problem” to being a human problem, one that is bound to come up any time one person interacts with another person. In this way, Milton encourages us to remove the inherent blame on autistic people and with it the weight of every miscommunication that has, for too long, fallen on our shoulders.

While there are aspects of autism that do cause impairment and require varying levels of support and accommodation — I sometimes get upset when plans go awry and I have to wear noise-canceling headphones just to exist in the world with any level of comfort — I see no impairment in the potential for joy that autistic people, like non-autistic people, have. Emotions are complicated and nuanced, perhaps even more so for an autistic person, and our impairment is often tied to the experience of being autistic in an ableist world. 

Even a basic Google search of the word “autism” brings results based on common queries such as: “Can an autistic person have a normal life?” Another website claims to give autistic people tools to “live fully.” Both of these results, while mostly benign in their wording and far from the most disparaging rhetoric about autistic people, are problematic. Each implies that an autistic person, simply because they are autistic, lacks the ability to achieve true fulfillment and purpose like their non-autistic peers. It boosts the myth that an autistic person is not capable of living a full life, or that our version of a full life would be one devoid of autism.

This focus on impairments is damaging on a communal level, as well as on an individual level. So much of society’s understanding of autistic people is based on lacking — a lacking of communication, assumed lacking of the capacity to feel or express emotions — but all of that lacking is based on neurotypical standards, on what neurotypicals consider “good,” “right” and “normal.” 

Coping with ‘Friends’ quotes

When I engage with my special interests, there is not a sense of lacking, but a sense of fullness. Whether it’s the TV show “Friends,” the Pittsburgh Penguins or the library system, interests that might be simple or fleeting for some are so much more for me.

My special interests are as much a kind of coping skill as they are a way of making sense of, and dealing with, the world around me. During those times when the world feels completely upside-down, it is my special interests to which I return. The time I spend engaging with them is what recharges me, and what increases my capacity to make sense of this oft-confusing and too-loud world. 

There’s a tug-of-war: I need to access joy to maintain empathy and hope, but also, I fear that looking for joy isn’t appropriate at times like these.

Spending time talking about, or watching, something I love unlocks a level of unbridled joy. I can sit and talk for hours about the show “Friends” and how many episodes there are in total (236). I can tell you about how Bruce Willis (who played Paul Stevens in Season 6) agreed to a guest appearance on the show only after he lost a bet to actor Matthew Perry (who played Chandler Bing). I can recall a quote or scene pretty much on cue and find a way to bring it up in an ordinary conversation. 

Or I can tell you all about the Pittsburgh Penguins; I can identify the majority of the players from the last 10-plus years by name and number. Or I can talk about how the workings of the Carnegie Library of Pittsburgh’s request system intrigue me, and how to finesse the process of requesting a book at just the right time so as to minimize the wait. These kinds of small, but intense, joys are ones that, I fear, non-autistic people don’t have the ability to understand. 

In the American version of the television show, “The Office,” in the episode “New Leads” (Season 6, Episode 19), Michael says to Dwight, “I would like your undivided attention, please,” to which Dwight responds, “You couldn’t handle my undivided attention.” While Dwight Schrute, who many fans think could and should be coded as an autistic person, is not talking about autism in the scene, his response resonates deeply with me as an autistic person. Non-autistic people are often ill-prepared for the level of depth and complexity we bring to topics we love deeply and intensely. 

I worry that I haven’t done enough to ‘earn’ my joy, or that maybe I don’t have the right to experience it at all — at least not in the ways I feel it. Sometimes, it feels as though the conditions—the what, how, when, where and why — of experiencing joy as an autistic person take a backseat to non-autistic people’s narratives of experiencing joy. So many of us are told to temper our enthusiasm about something we love. 

Maybe my joy, like me, is inherently autistic. 

My capacity for finding joy in the small things is not naïve; it is necessary. It is one of the many ways I have learned to survive in a world not made for people with brains like mine. 

During turbulent times such as these, it is especially damaging when people perpetuate the falsehood that autistic people cannot feel empathy. For all of us — autistic and not — our willingness to find and feel joy and hope when there seems to be none is not what gets in our way; it is what gets us through.

Finding joy is essential to having and maintaining empathy. So when you ask me how I’m doing and I respond by quoting a line or two from “Friends” or telling you about the gorgeous game-clinching and history-making goal that Penguins goalie Tristan Jarry scored last night, that is not me ignoring reality, but me experiencing it. I refuse to give up my humanity, empathy or joy just because I’m autistic. 

Eli Kurs-Lasky is a Pittsburgh native who interacts with the city through writing and photography (self-taught). He can be reached at eli.kurslasky@gmail.com.

The Jewish Healthcare Foundation has contributed funding to PublicSource’s healthcare reporting.

The post Please don’t mistake my moments of joy for a lack of empathy appeared first on PublicSource. PublicSource is a nonprofit news organization serving the Pittsburgh region. Visit www.publicsource.org to read more.

Pandemonium. My mom says that, when I was in kindergarten, ‘pandemonium’ was one of my favorite words. I loved everything about the word: the look, the sound and what it felt like to say aloud.

I’ve always been obsessed with words. I collect them like pet rocks — blow off any residual dirt and put them aside for safekeeping until I find the perfect time to use them.

When I was that pandemonium-loving (the word, not the concept) 5-year-old little boy, I was confident words would never let me down and heartily believed the old adage: “Sticks and stones will break my bones, but words will never hurt me.” The saying was so catchy, especially with its accompanying sing-song tune, as though it was a playground mantra. Slowly, though, I began to see through it. The more life I’ve lived and the more language I’ve used, the more I realize how sharp words can be, and yet how utterly inadequate and inaccurate they are as tools.

Growing up, there were times when I felt different from my peers and I wasn’t sure why, but it took a while before that gap between me and everybody else became truly noticeable. I have no idea whether most of my habits were coping mechanisms for feeling different in a world that values sameness or whether much of it was just me being me. People called me “too sensitive” and those two words became a kind of shorthand for something I wasn’t sure how else to describe. 

Apparently, no one else knew how to describe it either; it would be another decade-and-a-half before even a medical professional thought to assess me, leading to a diagnosis of autism spectrum disorder.

July, which is Disability Pride Month, feels complicated and confusing to me, at best. I’m always disabled and rarely proud. Sometimes, I wonder if I have a fourth layer of skin except, instead of skin, it’s a saran wrap-like film of shame that holds the rest of me together. 

I think of all the things I cannot do, the limitations I have, and all the tasks I accomplish in private so nobody can see how hard they are for me. I think of confronting a tactile sensation that’s awful to me — like some metal door knobs — and needing to wait until I’m alone and can find something to wrap around it so I can open it without contact.

I don’t know how to feel proud about that. 

What I know is this: I’m never going to find pride in myself so long as I keep trying to make myself smaller and less disabled in the process. I also know: I live in a society that is run by nondisabled people and sometimes my presence becomes one of an educator.

I am expected to metaphorically hold nondisabled people’s hands as I teach them how to interact with me and treat me with basic dignity. I often find myself trapped in thinking that the purpose of my existence as a disabled person is, first and foremost, to make the hypothetical nondisabled “you” around me more comfortable.

But much of the time, I’m too tired to explain, too tired to prove my wholeness.

Zoom migraines and caption blowback

At the beginning of the pandemic, when everything was forced to go digital, I remember people conjecturing that maybe this is the nudge society needed: Maybe we were finally making progress toward being more inclusive and more accessible. In some ways, digital life did seem easier and, in certain ways, more accessible. Suddenly, I didn’t have to figure out logistics of transportation for all of my appointments; I simply needed to turn on my computer and set up my webcam. I wasn’t expected to be in loud environments like busy restaurants; in fact, we were all being told not to do that. 

As an introvert, some of this came quite easily to me. At the same time, the pandemic tested my ability to keep masking just how many support needs I actually have. My ability to mask eroded with every passing day, and I was only growing more and more overstimulated.

It seemed as though every time I signed off a Zoom call, I was greeted with a migraine and complete exhaustion. It didn’t make any sense to me; weren’t Zoom calls supposed to be more accessible? I wanted to know that other people were feeling this, too. The migraines and exhaustion, I learned, were a result of trying to process speech from several different people, while also watching the squares on my computer screen constantly light up and change positions whenever the speaker did. It was a brand of sensory pandemonium I could not love.

I began flirting with the reality that regular video calls would not be sustainable for me unless I was able to access accommodations. At first, I concluded that it would be best for me to ask for as little as possible. I didn’t want to bother anyone. Besides, I had so little experience paying attention to my own sensory needs that I wasn’t even sure I knew how to explain them to others. I convinced myself that it’d be easier to hide my needs than to ask for them to be met.

I’d be sitting in Zoom calls centered around talking about what “full inclusion” looks like for disabled people and how to move our society closer to that point, and my request for closed captions during the meeting would be declined, because it was expensive, difficult, aesthetically displeasing or — my favorite — because I really didn’t need them.

I’ve taken all those reasons people have given about why my accommodations are unreasonable and understood them to be commentary on me as an individual; maybe I, too, am messy, bothersome and inconvenient, like the captions on a screen to a person who doesn’t need them.

I’ve been told (and retold) all the ways my brain makes things difficult for other people, so much so that I believe them when they say it.

Dulling pandemonium, mulling pride

How can I be expected to celebrate the fact that I’m disabled when I’ve been led to believe that my disabilities hinder me from being worthy of belonging?

I’ve tried to ignore my needs instead of asking for others to meet them. I’ve tried willing myself out of my disabilities. I’ve tried working harder. None of that works. 

Long ago, I took these words as a mantra: The parts of me that make life difficult or inconvenient for other people are not worth nurturing. People continue to tell me I’m too difficult in all the ways I need support and yet, they insist I should be proud of being different. 

It’s hard to take pride in an aspect of my identity I was never taught to celebrate or nurture in the first place. 

Now I watch and wait and pretend to know how to adapt. Some things — events, appointments, hangouts — are still occurring digitally, but there’s also a lot happening in person. I’m still learning my way around asking for accommodations, even as I’m held hostage by memories of being labeled as burdensome. I’m still terrified of having too “messy” a brain. 

But I’m trying. 

Several months into the pandemic, I bought my first pair of noise-canceling headphones. They are far from perfect, but when I put them on for the first time and actually experienced quiet, I thought I might cry. It wasn’t a feeling of pride necessarily, but suddenly existing in this too-loud world felt doable to my ears. The pandemonium faded, just a bit, so that the language that I love could reach my ears. Once again, words could go back to being words, not daggers.

Eli Kurs-Lasky is a Pittsburgh native who still loves the word pandemonium. He interacts with the city through writing and photography (self-taught). He can be reached at eli.kurslasky@gmail.com.

The post From loving ‘pandemonium’ to enduring the pandemic, ‘disability pride’ has proved elusive appeared first on PublicSource. PublicSource is a nonprofit news organization serving the Pittsburgh region. Visit www.publicsource.org to read more.

Watching the news often feels like playing an extreme sport — a tumultuous experience akin to tiptoeing across a tightrope tethered between the spires of the Cathedral of Learning and Heinz Chapel. It can be equal parts exhausting, distressing and simply impossible if you value your own well-being.

While I want to stay informed about the world around me, the line between “staying informed” and “satiating a sense of morbid curiosity” is thin. On somewhat bad days, that line is obscured and hard to find. On worse — and ever more frequent — days, that line has been completely obliterated. 

After the Supreme Court overturned Roe v. Wade in June, I — like so many others — was flooded with sadness and anger. The reversal sent a clear message: There are people, some of whom hold high positions of power, who believe bodily autonomy is a privilege and some people — some bodies — should not have that privilege. I feared, and still fear, the repercussions and the potential of the Supreme Court continuing to chip away at rights for those of us who may also be deemed less deserving. 

The overturning of abortion rights felt sudden, though I knew it was anything but. I wanted to know how we got there, why it wasn’t prevented, and yet I dreaded knowing. I could say the same for climate change, war and other human rights at risk.

I can’t be the only one who is both alarmed but also tempted to close my eyes until the atrocities go away.

As the youngest of three siblings — the “baby,” no matter how many birthdays I’ve had — I grew up internalizing my role as just that: always the child. I saw my older brothers as a kind of protection between me and the rest of the world, a buffer between childhood and adulthood. I secretly reveled in the thought that I didn’t share the same level of responsibility as my brothers and the adults around me, that keeping everything together wasn’t my responsibility (yet). 

And even more secretly, I hoped that “yet” would never come. The more I learned and saw about the world, the more it terrified me to think that one day myself and my peers would have to shoulder responsibilities that seemed unbelievably daunting. The older I get, the more perverse that thinking becomes. 

When we center our identity around a role of dependency, we are lying about our responsibility and our capacity to effect change. We lie about this because it’s easier. We lie because thinking about the future is hard; it’s intangible and unpredictable. 

To understand this further, I reached out to Carnegie Mellon University Associate Professor Russell Golman, who researches decision-making and active avoidance of information. He told me the future is “inherently uncertain,” which makes us approach it tentatively. “The combo of uncertainty of what’s going to happen and the uncertainty of what you can do about it — combined with misinformation,” he said, is a huge reason as to why we struggle to face or outright avoid dealing with large challenges on a societal level. 

Our desire to look away from what’s going on is nothing new. It’s understandable and — to an extent — protective. But, as Golman notes, it is also shortsighted and drives us away from taking action, regardless of the severity of the crisis at hand. Golman notes that often, people are actively looking for excuses to avoid information, and we heavily lean into a confirmation bias. 

When information goes against what we believe — about ourselves or the world — humans are awfully good at finding crafty ways to justify their inaction.   

When author and transgender man Thomas Page McBee discussed his journey of coming into his own in his book, “Amateur: A True Story about What Makes a Man,” he said, “It’s a paradox, to know we need a future that we can’t yet imagine.” That paradox paralyzes us, both individually and on a societal level. 

When I asked Professor Golman why he thinks that is, he pointed at two reasons in particular. We simply don’t know what to do or how to approach large-scale crises. And sometimes the things we can conceive of doing — those small, individual, incremental actions — actually serve as distractions to the larger cause. While there’s somewhat of a guideline for how to approach small, personal crises (e.g. a breakup, losing a job), we don’t have that same framework for the crises that happen on a societal level.

While there’s an importance to putting in the work now to see the benefits later, adopting that perspective can be harder than it seems. The concept of doing something “for the good of future generations” is just intangible enough that we can use that statement as a talking point while also not doing much to actually effect change. What — if anything — are we really doing for the people who will outlive us, some of whom we’ll never meet? 

In Judaism, there’s a common adage: “It is not incumbent upon you to complete the work, but neither are you at liberty to desist from it.” While no one of us is responsible for finishing all of the work and healing all of society’s wounds, none of us is free to abandon the work either. 

I’d be lying if I didn’t acknowledge that I often find myself longing to return to the childish feelings of disinterest and disaffection, mostly because I think that being unaware provides some relief. 

But what is relief when there are people being stripped of their bodily autonomy?

What is relief when mental health crises and related situations, like homelessness, continue to surge? 

What is relief when so many people — including many of my close friends — depend on the kindness of others to donate to their crowdfunding efforts, just in hopes of being able to access healthcare, housing and food?

I’ve always hated the idea that people and causes can only earn our empathy when we know someone who holds that identity; why should we need a personal example before we feel ready to care about something? And yet, sometimes it is hard to act when thinking in abstract. 

When I watch the news — when I return to traversing the tightrope between the highest points of the Cathedral and Heinz Chapel — I can’t help but feel scared. Though our capacity for tragedy is limited, our capacity for humanity needs to expand. 

On March 30, 2019, during a speech in Berlin, climate activist Greta Thunberg said, “We are failing but we have not yet failed.” In her speeches and writings, Thunberg reiterates that the only way we’re going to give climate change the attention it deserves is if we full-on panic. Anything short of panic, Thunberg says, will go nowhere. We’ve been going nowhere. 

Failure to act seems like a failure that we don’t talk about enough. During the Saturday morning service of my bar mitzvah nearly two decades ago, after I read from the Torah, my great-uncle Hal leaned over from where he sat in the congregation, proudly telling me, “I’ve never heard you make so much noise in your entire life!” I think I smiled when he said that, but I felt uncomfortable; in a way, I felt like I had been “found out.” For a long time, I replayed those words in my head, taking them at face value, and mistakenly equating “making noise” with “causing trouble.” 

With the time that has passed, I can now see that my discomfort with making noise is not that far removed from my younger self wishing to stave off responsibility or my current self wishing to be young again so I can close my eyes and ignore what’s going on around me. 

I still don’t know how to pay attention to the news without feeling completely swallowed by it, but for now, I’m just trying to remind myself that though I will never be able to do everything, I can — and should — still do something. For those of us in the present. And for the future. 

Eli Kurs-Lasky, a Pittsburgh native, typically experiences Pittsburgh through writing and photography (self-taught). He can be reached at eli.kurslasky@gmail.com.

The post We’re the solution and maybe that’s the problem: How we (don’t) handle crises appeared first on PublicSource. PublicSource is a nonprofit news organization serving the Pittsburgh region. Visit www.publicsource.org to read more.

On Jan. 15, three congregants and one rabbi were taken hostage in Congregation Beth Israel in Colleyville, Texas. They were held hostage for over 11 hours. In Pittsburgh, over 1,200 miles away, I refreshed news websites in horror. 

Shortly before midnight, I updated my status on Facebook: “Today, my heart is in Texas” and, following that, an emoji of a purple heart. I use purple hearts because purple is my favorite color, not out of a desire to communicate a feeling of bravery. I’d be lying, though, if I said sharing these words didn’t feel like an act of bravery. They do. 

I can feel my heartbeat ping-ponging between my chest and my throat as I try, only somewhat successfully, to convince my body that today I am not the one in imminent danger. As a Jewish Pittsburgher who spent the first 16-plus years of his life at Tree of Life, the trauma from the vile and violent attack at Tree of Life*Or L’Simcha Congregation less than three-and-a-half years ago still lingers. 

This time in Colleyville, Texas. This time in a state I’ve never visited. This time in a synagogue where I was never a member. This time in a synagogue I can’t picture when I close my eyes. This time in a synagogue where I did not learn the Hebrew word for heart, lev (לב). This time the pit in my stomach wasn’t connected to the fear that I would recognize the names of any of the hostages. This time.

I say “this time” because, as a Jewish young adult, I am more than well aware that antisemitism has been around for just about as long as we have existed. The oppression and persecution of Jews has been and continues to be near constant, a prominent feature of our history. Our history has shown us that, oftentimes, we as Jews don’t have the choice of whether or not to be resilient; it feels like a prerequisite for life that never really goes away. 

On the morning of Oct. 27, 2018, I was at home with my dog, cuddled in bed, and trying to summon the energy to walk downstairs to make myself breakfast. The desire to stay under the covers to stay warm was soon replaced by the need to stay under the covers to muffle the relentless screams of sirens from police cars and every other type of emergency and crisis response vehicle imaginable as they rushed to a synagogue just blocks away from me. 

For a few short minutes that I wish I could remember more than I do, I was still naïve to what was going on. It’s hard not to feel a sense of longing at the thought of returning to the protectiveness of a time when things were still OK. Then, the flood of incoming texts from loved ones: Are you safe? How are you doing; are you OK? Wait, is that your synagogue? I started typing the same text to so many people that after the third or fourth iteration, my phone began to autocomplete my sentences: I am physically safe. I am emotionally shaken. 

I grew up at Tree of Life, but left and became a member at a different synagogue several years prior to the attack. Still, I could close my eyes and mentally navigate through the building. In the following days, as more information about the attack was unearthed, so too were my own memories — praying in the sanctuary, learning in classrooms, walking up and down the stairwells to get to class or bar mitzvah lessons or services, opening the supply closet to get extra paper or pencils for class — came roaring back to me. I longed for each of these places to seem mundane again.

At this point, it felt nearly impossible to use my better judgment and ignore social media and the news. I wasn’t a glutton for punishment, but I also couldn’t avert my eyes from the horrors that had just happened. The need to know what was going on was overwhelming. Nothing could make sense of this. No explanation for tragedy makes it sting any less. 

I turned on the television and started scrolling through social media and saw everything from people sharing their memories of growing up at Tree of Life to people discussing the way their stomach dropped hearing what was going on. And then, I started to see people I knew — other people who live in Pittsburgh — using their social media accounts (and, later, some of this even extended into conversations in real life) as a way of perpetuating antisemitic tropes; though they weren’t necessarily condoning what had happened, they weren’t condemning it either. At the time, my community was still in horror and disbelief. I was still in horror and disbelief. My sense of safety was gone. Though I wanted to be mad about the hateful rhetoric, and I was mad about it, it was hard to feel much of anything beyond shattered.   

Fast forward to 2022. I still hesitate when I walk to synagogue wearing a kippah on my head. Sometimes, I stash it in my coat pocket, waiting until I’m just outside the door of my synagogue to put it on. I could write a book of all the Facebook posts I started to write, but then deleted, because I was tired and afraid of more hateful rhetoric. As much as I want to say that I combat such comments head-on, it is hard to do when I see how normalized antisemitism has become. It’s painful seeing all the not talking about it that many of my peers are doing.

When I started receiving alert notifications on my phone about the hostage situation in Texas, the numbness started to return. Though I was just about certain I knew no one there, it still felt like my community was the one being attacked. It still felt like Oct. 27^th all over again. I continually refreshed different news websites, searching for more information, again naively chasing a feeling of understanding that is impossible to find after tragedy. 

This time there was no cacophony of police sirens. This time I saw just a handful of Facebook posts about what was going on. This time few of my friends were talking about what was happening. This time it wasn’t happening in our backyard. This time.

Being Jewish in the United States in 2022 shouldn’t be traumatic and, on its own, it’s not. But with the normalization of hate and extremism, along with the romanticization of antisemitism — something I’ve seen to a scary degree among my peers and in spaces touted as being inclusive — it’s hard not to feel like this is the same wound, reopened.

As I, like many others, wait for more information to come from what happened at Congregation Beth Israel in Texas, I will also be closely watching the words of news outlets and friends alike as I grapple with my own sense of belonging and the courage I wish I didn’t need to tell people I’m Jewish.

​​Eli Kurs-Lasky, a Pittsburgh native, typically experiences Pittsburgh through writing and photography (self-taught). He can be reached at eli.kurslasky@gmail.com.

The post ‘My heart is in Texas’: Trauma’s long legs for this Jewish Pittsburgher appeared first on PublicSource. PublicSource is a nonprofit news organization serving the Pittsburgh region. Visit www.publicsource.org to read more.

Compelling personal stories
told by the people living them.

Despite the fact that I say “soda” instead of “pop,” have no interest in eating pierogies and have only used the word “yinz” ironically, I have a lot of Pittsburgh in me.

Here in Pittsburgh, we talk about what is by framing it as what was. We give directions based on the landmarks that used to exist, but are no longer. Sports fans tend to reference arenas that have long since been replaced: The Igloo — the home of the Penguins during their first three Stanley Cup championships. Three Rivers Stadium — which hasn’t existed in 20 years, though we will never tire of hearing about the Immaculate Reception.

We are grit and steel and hard work and a myriad of superstitions that keep the Penguins and Steelers winning. A mere 19 days after I was born, the city erupted in cheers as the Penguins swept the Chicago Blackhawks to win the Stanley Cup. We are our history — we are everyone and everything that came before us.

I wonder if I’m Pittsburgh in that way, too.

I was in my mid-20s before I got an autism spectrum disorder diagnosis. It came after a succession of big changes left me drained, distressed and no longer able to hide the symptoms I had so expertly learned to mask for my entire life. I was hiding the pain of making eye contact; of staying in overstimulating environments; of losing the ability to process words; of being nauseated by touching certain common textures — chalk, metal, money, newspapers — but telling no one.

All the strategies I had been using to adapt and assimilate were suddenly — or so it felt — being forcibly stripped from me. The sheer magnitude of change, and thus distress, was enough to completely topple the ability I had previously — somehow — cobbled together to appear competent and confident when it came to blending in with my peers. Years of faking it — and being good at faking it — meant that my autism diagnosis surprised most other people as well.

I began thinking about Pittsburgh — if, and how, it played a role in any of this. Does the way we, as Pittsburghers, talk about our environment trickle down to how we talk about people? Is who I am now limited by who I was perceived to be previously?

I often worry that the answer is yes, as though I used to be “unautistic,” then one day opened the door to some elusive Narnia-like portal, was diagnosed, and all of a sudden, I “became autistic.”

And I was convinced that if I did a good enough job of lowering my support needs, I would finally be able to placate the confusion and judgment I perceived coming from all the people who knew me before my diagnosis.

I am still fearful of being held to the standards of the perceived existence of an “unautistic” version of me, as if I’m some long-gone landmark that people can’t bring themselves to relinquish. It is misguided, though, to think I ever existed as a non-autistic version of myself. I have always been my quirky autistic self. I stopped hiding, not because I felt ready or relieved, but because the shame was a hellish buildup of utter exhaustion and pain that I could no longer keep to myself.

In a lot of ways, I had to relearn myself. I hoped to find some kind of “paper trail” of my autism’s existence even before I was aware of it and began peppering many of my appointments after my diagnosis with questions of, “Wait, so was this (insert thing I did or said or felt) an autism thing?” My doctor said yes nearly every time.

Growing up not knowing I was autistic felt like being untethered, my understanding of self orbiting around feeling like I was constantly falling short without any knowledge as to why. I thought my inability to adapt to a world not made for my kind of brain was some kind of personal failure. Is autism like a football — something that can be caught and, unlike at Three Rivers Stadium, hopefully dropped? How much ableism is championed in the hope and expectation that this can be fixed if I try hard enough?

I have tried, though. I have tried so hard that I emotionally crashed and burned as a result. In the days and weeks leading up to my diagnosis, the crash and burn seemed to be on a nightmarish repeat every single day. As the pile of distressing things seemed to grow bigger by the moment, the threshold of what triggered me to the point of extreme shutdown rapidly shrank. I was experiencing such intense autistic shutdowns that, on multiple occasions, I completely lost all sense of where I was.

A year after graduating from college magna cum laude, one form my extreme shutdowns took was me getting lost in small spaces. Sometimes, the visual monotony of repeating tile patterns in public bathrooms overstimulated me until I felt so paralyzed that I couldn’t find my way out of the bathroom. I felt isolated and unsure of how I could possibly explain this to anyone around me; I was humiliated.

I had come to assume that things were supposed to be this consistently difficult and grueling. I assumed that everyone felt like crying when noises got too loud; or spent entire conversations trying to calculate the frequency, duration and intensity of eye contact they should be making, and then were forced to spend several hours just recovering from that eye contact; or negotiated with their brain in efforts to ration their energy well enough to interact with others, eat, stay hydrated and shower all in a single day.

It took me a while to acknowledge just how much energy I was using for the simplest of tasks, how much energy I expended just to maintain some baseline appearance of composure. Without adequate support, though, keeping up this facade was difficult at best and totally impossible and harmful at worst.

I am still trying to unlearn more than two decades of misunderstanding myself and not having the language to express what I was experiencing. I am not “more autistic” now than I was then; now I have the language I didn’t have then.

I spent more than 20 years convincing myself I was just inherently bad at normal human things for no reason, except that maybe I was really lazy (a trait that has never described me, yet I am always terrified that’s how other people perceive me). It didn’t occur to me to seek out resources on my own because I truly thought everyone felt like this.

While Pittsburghers have trouble moving on from the past, the city remains an integral part of our identity. No matter where I go, I will always be from Pittsburgh. No matter how well I mask, I will always be autistic.

I still wonder (and worry) about how others perceive me. Do people talk about and think of me like an old house in Pittsburgh, where my current worth is dictated by my past (read: “pre-autism”) self? Was my past The Igloo — championships and all — and my present is the empty lot there now?

The same year I was diagnosed as autistic, Pittsburgh, once again, erupted in cheers as the Penguins, once again, were crowned Stanley Cup champions. As the entire city celebrated, so did I, albeit in a much quieter and smaller way. I was doing the terrifying, but celebratory, work of unlearning how to disappear.

Just like Pittsburgh, my own personal history is full of grit and hard work and superstition.

Eli Kurs-Lasky, a Pittsburgh native and devout Penguins fan, typically experiences Pittsburgh through writing and photography (self-taught). He can be reached at eli.kurslasky@gmail.com.

PublicSource and Pittsburgh City Paper partnered to co-publish this first-person essay.

This essay was made possible with financial support through the Pittsburgh Media Partnership.

The post Pittsburghers cling to history. Is my own worth determined by a ‘pre-autistic’ past? appeared first on PublicSource. PublicSource is a nonprofit news organization serving the Pittsburgh region. Visit www.publicsource.org to read more.

As an Autistic person, change of any magnitude completely devastates me. It prompts a palpable feeling akin to my body free-falling through time and space; a near-immediate fallout of my ability to process words, thoughts, emotions and physical sensations; and the disintegration of all these “easy” tasks into burdensome and draining. 

Suddenly, I become seemingly inept at dealing with even the smallest of deviations in my day. Everything feels like more, and sensory input feels louder and, honestly, physically painful. I begin to notice everything, like the way the fluorescent lights in the East Liberty Target flicker 120 times every second, stinging my eyes, and leaving me on the verge of tears. 

The task of adjusting to something entirely new and entirely unpredictable feels almost unbearable. To mitigate such disruption, I maintain a very predictable schedule, as the routine helps me better integrate in, and fully participate with, my surroundings.

Initially, I hoped if I stayed blissfully unaware about the coronavirus, maybe I could will it from being as devastating as I feared it actually was. But, as the list of activities and events that were postponed and then canceled grew by the minute, I realized how unrealistic this hopeful ignorance was. 

The changes multiplied rapidly and my own panic grew as I watched others’ panic do the same. I dreaded each small change, and the inevitable anxiety they caused me, each more than the previous one. As much information as my brain tried to hoard about the pandemic, whether through news outlets or via social media, I noticed a major absence in the coverage: Nobody was discussing the effects of this pandemic on disabled people like me.

I began hearing from my various medical providers that my appointments were either canceled or switched to remote “telehealth” appointments for an undetermined period of time. Ironically, all the precautionary measures that were being implemented to keep myself and others safe also were the ones that were leaving me feeling helpless and frustrated in the intense anxiety and uncertainty.

The structure I had worked so tirelessly to create and uphold for my own well-being was being stripped from me. On top of that, I was losing my independence. As a disabled person who doesn’t drive, my ability to go anywhere was limited by where I could walk or where someone close to me (who I knew was healthy) could drive me, as the advice of health officials to stay away from public spaces, like buses, became increasingly urgent.

Navigating a bunch of successive changes, one right after the other, felt unbearable. It felt like my brain was suffocating, trapped by the constant increase in limitations. Every aspect of my daily schedule slowly crumbled as I felt lost by the lack of routine.

Two years ago, in January 2018, my doctor gave me a homework assignment: write a list of constants in my life.

She said this would help me realize that, even among the most change-filled times, there were some things that were still the same, and that it was possible to garner comfort in those things. 

I recently unearthed the list in my phone, remembering her suggestion for the first thing on my list: no matter what changed in the day-to-day world, I knew gravity would always be a constant.

At the time, I found this ridiculous and admittedly still kind of do, but as I return to this list during this pandemic, I am trying to find the comfort in finding at least one thing that will never change.

Eli Kurs-Lasky, a Pittsburgh native, typically experiences Pittsburgh through writing, photography (self-taught) and traveling wherever his ConnectCard takes him. He can be reached at eli.kurslasky@gmail.com.

PublicSource has a special page dedicated to our reporting on COVID-19 for the Pittsburgh region. See it here and sign up for our newsletter to stay informed. We hope you are following the news and, if your situation allows, social distancing guidelines.  Have a tip or an idea? Please email mila@publicsource.org.

The post What the coronavirus pandemic has meant for me as an Autistic person appeared first on PublicSource. PublicSource is a nonprofit news organization serving the Pittsburgh region. Visit www.publicsource.org to read more.

From left to right: small fork, large fork, plates atop one another in concentric circles, knife, spoon. Much of the eating process is a learned script of repeated motions based on social interactions, spatial relationships and expectations.

I sat in a hotel room in Vermont on an unseasonably warm afternoon in September 2016 — the weekend of my cousin’s wedding — as the sound of an overworked window air-conditioning unit filled the room. I pondered how the whole idea of a rehearsal dinner strikes me as a bit odd. I was not in the wedding party; I was merely a guest who traveled from Pittsburgh, and yet I was invited to attend the rehearsal dinner, the first of many official wedding-designated events that weekend.

What was I to rehearse? I anxiously fiddled with the seams on the outer leg of my shorts as I moved through the hotel room I was sharing with my parents and one of my older brothers. I felt energy surge through my arms, as if they would’ve taken flight had I let them.

Maybe this was the answer. I was rehearsing being a version of myself that didn’t embarrass those around me. While I didn’t yet realize I was autistic — at the age of 24 — I knew that something about me diverged from most others.

I walked over to my suitcase where I had packed an ACE bandage, hesitated, picked it up and then put it down again. For the past couple weeks, I had been wearing the bandage on my right forearm to keep my arm still; I would wrap it from the grooves of my palm and extend it to right above the crease where my elbow bends. The bandage was not suggested to me by a medical professional, but I began to wear it when I noticed my arms moved more than other people’s.

My arms were constantly in motion, as if I were conducting a never-ending orchestra. Sometimes the movements were fluid, smooth even, but other times my right arm looked as though it were climbing an invisible jungle gym, my muscles contracting and tensing in uncomfortable positions. It was the tangible evidence of years of internalized ableism and shame.

I quickly became self-conscious of how much room my body took up when my arms were moving, fearing that it was the kinetic equivalent to raising my voice over others’ voices. My left arm was a bit stealthier in its movements, so I only ever wrapped my right one. I decided to put the bandage on at the last minute and walked downstairs to the rehearsal dinner.

I had become so used to hiding my right arm, in part spurred to do so by all the messages I received from others about what I was “supposed” to be like — think “act your age” and “pass as normal.”

At the time, I didn’t have the language to explain what was happening in my body or brain to cause this excess movement. I had never met anyone who seemed so similarly uncomfortable and pained by the way their own body moved.

One relative asked why my arm was wrapped, and I noncommittally answered that I didn’t really know what was wrong with it. It just felt weird (which was true).

The next day, I got dressed for the wedding: light blue button-down shirt, black suit jacket and a pair of dark chino pants. My gaze fell again to the bandage, this time lying unraveled atop the bed.

“Please don’t wear that. You really don’t need it,” my mom said to me.

“What do I do with my hands?” I asked.

“Put them in your pockets,” she said. It seemed like a relatively simple directive, at least initially.

We walked downstairs to the wedding ceremony, where I sat on a folding plastic chair. My fingers wanted to race like my thoughts, feeling the texture of the folds in my pants under their clammy grasp. But they didn’t.

Instead, I reminded myself: Put them in your pockets.

I don’t know how long the wedding ceremony took, and I lost count of how many times I had to remind myself to quell my arm, hand and fingers from moving. We walked to another part of the hotel property where a buffet was set up outdoors. My mouth was dry, so I poured myself some pink lemonade as I saw my uncle, the father of the bride, approaching. I didn’t know what to do with handshakes, hugs and small talk; I still don’t. As my uncle went in for a hug, my right arm jerked to the side, spilling lemonade on the cement, just barely missing my dress shoes. Hoping no one had noticed, I rushed forward to catch up with my brother walking in front of me.

I shoved my hands deeper into my pockets.

Stuffing my hands into my pockets felt like the equivalent of stubbing a toe.

I’ve heard the cliché about silence being loud, but this silence wasn’t loud or profound in any way; it was about restricting my body’s movements to the point of causing myself pain. This was the silence that garnered congratulatory remarks from the physical therapist I was seeing at the time: she had me pushing a tube sock over my arm until the compression exhausted my muscles. She told me if I put my hands in prayer position 16 times a day, the silence would fix me.

My palms were building a reservoir of sweat, and my hands needed fresh air. I uncurled my fists as I removed my hands from my pockets and looked down. I saw a few wedding guests fix their glance on my hands in a way that questioned if I belonged at their dinner table. My pants, new and oversaturated with dye, had stained my fingertips dark blue.

The rational reasoning didn’t decrease the shame. It never does.

My hands didn’t feel like hands. My hands felt like static rushing across each ligament: I felt too much. I could feel everything.

I started balling my hands into fists because fighting seemed easier than feeling. Put them in your pockets.

A few short months after the wedding, after having gone through three ACE bandages, some medical tape and an additional wrist brace, my doctor asked me why I was covering my arm. I told her I did so because it hurt. She asked me what feeling I was trying to suppress. I considered her question but didn’t give an answer. I spent the next several months trying to become left-handed while I hid my right arm from sight. Put them in your pockets.

I spend much of my time thinking, but not talking, about my hands. I get the sense others would prefer to ignore them. Some people stare without ever speaking; others feign genuine concern just long enough for them to think it is appropriate to ask if this is early-onset Parkinson’s disease. Others know to follow my lead, and if I want to talk about it, I will.

One of my best friends, who has never been fazed by the way I move differently, calls the way my arms move “dancing.” She assures me she’d be more troubled by me hiding myself to be couth than watching my arms move to an unknown rhythm.

***

Nearly a year after my cousin’s wedding, I attended a dinner, this one not a rehearsal.

Not only had time passed between the first dinner and this one, but something else had also changed. I finally had an answer to my doctor’s question: what I was trying so hard to suppress was the nagging feeling of being different.

This dinner was different. I wasn’t being asked to blend in purely for the sake of upholding traditions for the comfort of those around me.

I spent the first hour-and-a-half helping with set-up and spent much of my time tapping the base of my palms onto the side of those same dark chino pants, not caring how much my arms moved. I was comforted by the fact that many of the other people in the room were also autistic. I watched as their hands, looking just like mine, moved through the air as if they were music.

No one asked me to put my hands in my pockets.

I took my glass of ice water and the plate I filled with food from the buffet back to my seat. Throughout the evening, my fingers were flitting back and forth between the balled-up napkin in my lap and the thick rim of my water glass.

No one asked me to stop moving. No one told me to put my hands in my pockets.

This time, the bandage was nowhere in sight. My hands felt like hands.

Eli Kurs-Lasky, a Pittsburgh native, experiences Pittsburgh, the city he calls home, primarily through writing, photography (self-taught) and traveling wherever his ConnectCard takes him. He can be reached at eli.kurslasky@gmail.com.

The post Ableism at the dinner table: How I learned to ignore glares and let my arms ‘dance’ appeared first on PublicSource. PublicSource is a nonprofit news organization serving the Pittsburgh region. Visit www.publicsource.org to read more.