The Neurodivergent Shadows in Us

There are going to be spoilers for Jordan Peele’s film Us, this movie that’s been out for months now, but sometimes that’s just how it has to be, and it wouldn’t make sense if I attempted to do anything else. Also, I am writing specifically about my personal experiences in relating to both this film and the following subject matter with which I try to engage.

Like Terry from his Gayly Dreadful article Tethered to the Closet, I knew practically from the beginning that Adelaide Wilson wasn’t normal and that, eventually when I learned about them, she was one of the Tethered. However, the difference I want to make clear is that while Terry related to her as someone coming to terms with being gay, I am not on the LGBTQ spectrum at all, I am also not American, and part of my reasoning for thinking she was one of the Tethered is because I am fairly good at guessing twist endings: being a writer, and a geek.

Yet there’s another reason why I can relate to Adelaide, and the Tethered.

Like Adelaide, I grew up as a child in the 1980s. And like the Tethered, who replaces her, who was the original Red and becomes the Adelaide that we know as the protagonist of Us, I grew up with developmental issues. I’ve talked about them before. These days, I would be called non-neurotypical, or neuro-divergent. My brain is wired differently from some perceived baseline in the mainstream population. I learn and I react in other ways in contrast to the current social paradigm. But, growing in the public school system of Canada and North America itself, I was given another label.

I am learning disabled.

Diagnosis is still relatively confusing to this day. Some of my disabilities could be confused with aspects of what some experts call the autistic spectrum, while many of my challenges have — ironically enough — been classified under the umbrella of nonverbal learning disorders.

Of course, I am not saying that the Tethered are the same — seeming to be clones of citizens created by the American government with their own developmental issues either by accident or design — but some of their characteristics can be seen as symbolic as some kinds of neuro-diverse behaviour. Terry, and other writers examining Adelaide focus on how she has a different, or inverted, sense of rhythm compared to others such as when she’s attempting to snap with the music that her husband Gabe is playing on the car radio. I remember her trying to also show her son, Jason, how to do the same thing: and this feeling I couldn’t describe came over me watching her. She looked both happy, and vulnerable, and awkward but genuine in that moment. It is a situation that the actress Lupita Nyong’o portrays well. She has, to some extent, learned how to match the rhythm, or mimic it enough where she is only slightly off. And aside from not being one for small-talk, no one can really tell the difference. Adelaide seems normal on a cursory glance.

She can pass as mundane.

At the beginning of the film, Adelaide is lost as a child in a boardwalk mirror house on the Santa Cruz beach. When she is found again, or seems to come out of the establishment, she seems to be rendered mute. Of course, we realize later that this isn’t the Adelaide that went in there, but rather the Tethered girl Red who has not learned how to vocalize, and her hand-eye coordination is relatively sloppy and haphazard. Her parents believe that something traumatic happened to her when her father lost track of her. They get her to see a therapist, they enroll her in dance courses — in ballet specifically — and she acclimates after a while.

When I was a child, I didn’t vocalize. Not really. I communicated in gestures, and grunts. It is one of the reasons I couldn’t stay in a mainstream daycare or kindergarten. My hand-eye coordination was also terrible: having what is called motor clumsiness. I didn’t really learn how to walk until later in my developmental period. My parents had me see therapists. I even had physiotherapist sessions where I rolled around on a giant ball and developed my reflexes more. My parents also enrolled me in a specialized kindergarten for children with special needs called Adventure Place. In fact, I had gotten so used to being there that when my parents were told I could attend mainstream public schooling, or I had to, I was so confused by the idea of “recess” and time before class that I got lost my first day at Thornhill Public School. And then, another time, I stayed on the school bus and the driver accidentally drove away with me: completely terrifying my parents even though I had, apparently, dozed off and had a nap.

I mean, I guess at anyone of those times I could have — or someone like me — could have found myself in one of those subterranean places filled with rabbits not unlike Alice’s Adventures in Wonderland or its original title Alice’s Adventures Underground where I found a Shadow: not unlike those whom are forced to suppress their own feelings and mirror the actions those of their counterparts above ground against their will from the story that Red told Adelaide.

Do you want to know what I remember the most about my time as a child in the 80s, outside of therapy and all encompassing special educational spaces?

I was afraid. All the time.

My main memories of Thornhill Public School, were the dingy, yet antiseptic halls of the school itself with their old copper-coloured rubber glue stoppers, the long grey crooked scissors we used in art classes, and just how dark and old the basement was where the janitors had their office. I remember not wanting to be there, and wanting to be at home. I just wanted to go home.

At the same time, this was the period of the Beetlejuice cartoons, Teenage Mutant Ninja Turtles, Fraggle Rock, and the Dark Crystal comics as well as You Can’t Do That On Television on YTV. Adelaide herself had C.H.U.D., The Goonies, and Michael Jackson’s Thriller in her early life, and while I hadn’t been exposed to 1980s horror and specifically those adventure art movies at that time, they were on my popular cultural periphery and they would have intersected. And I was always both fascinated and terrified by horror in the form of hearing about such movies, and also folktales. I fed off of these elements, and they became part of my intellectual DNA, especially when in my Special Education class with Mr. Phillips I learned how to actually read from Grades 1-3.

They got me through a lot of the fear, but I still remember those halls and that basement: a place not unlike the underground facility where Red — before she was Adelaide — then Adelaide herself having been captured and abandoned by Red — and all the other Tethered clones wandered around aimlessly. It always occurred to me just how easy it would be to get lost in those corridors, and looking at the Tethered, few can be as lost as they.

Even though my perceptions improved, I still had — and still have — spatial difficulties. I get lost all the time, and directions as well as maps don’t always make sense. I also have dyscalculia: a learning disorder that makes arithmetic extremely difficult to do in my head. I can add and subtract, but I am slow at it, and I can’t multiply or divide without extreme challenge, or a calculator.

I also used to fidget a great deal — and I still do. Usually, it is a way to express excitement, anxiety, stress, or all of the above. I’ve learned to control it publicly for the most part, but the mileage can vary depending on the circumstances and my comfort level. Sometimes, when I get into that state, it is a lot like a free-form dancing: and it reminds me of Adelaide’s own dance and ballet classes as she was growing up on the surface.

And then there is communication. Like I said earlier, in the beginning I barely if ever used words to communicate. And, even now, when I’m nervous I will either ramble a great deal to make up for a perceived lack of content on my part, or I will be quiet and utilize few words. Even looking at how Adelaide talks with Kitty Tyler on the beach, or has difficulty talking or expressing her emotions to her own husband reminds me of my own impatience, or discomfort with small talk — which I generally try to compensate by talking about very specific topics of my interest, and not always the other person’s next to me — as well as my challenges expressing myself in a public, or even personal situation.

I know I really felt for Adelaide when she was attempting to communicate with her husband about her feelings: about her lack of comfort being in Santa Cruz, and even her annoyance with him for making fun of her quirks. I’ve had that happen a lot: from children laughing at my slow talking or thinking, and authority figures telling me to stop talking to myself (as if I were embarrassing myself and not them), and even having partners who just didn’t understand why I couldn’t be more like everyone else. That is the social interaction disorder element of some learning disabilities coming into play. It’s frustrating. It is beyond frustrating. When I was in daycare, before Adventure Place, I apparently did not want to talk or interact with my peers. I just wanted to stay in my own world. And I recall feeling a lot of anger and resentment for having to be with others who either made fun of me, or just didn’t understand me at all.

Even later, having gotten more therapy, I would often not cut or make my art the way I wanted to, and I would get frustrated with my tools — with my hands — and my own coordination to the point where I would destroy what I was working on because it didn’t meet my own expectations. My psychotherapist has asked me on occasion whether I sometimes feel toxic inside, or outside: and often I say I feel both for this reason. And I can only imagine Adelaide, especially with her experiences having gotten out of the facility underground, and adapting to the world above, having similar feelings and thoughts.

And I adapted too. I went to Special Education classes, but aside from those I focused on my strengths. Whereas someone like Adelaide delved into dancing and ballet, I attempted to become an artist, and eventually a writer. Overtime, as I went through the ranks of the public school system and university, I weeded out the courses I had difficulty with and focused purely on my strengths. Eventually, in my own mind, while taking advantage of the extra time afforded me because I was a learned disabled student, I came across as normal. I could be like everyone else. I could be “high-functioning.”

I could pass.

But I never really did. And while Terry, in his “Tethered to the Closet” article talks about that deep, dark Shadow secret of his sexuality has he attempted to pass on the sexuality spectrum, I tried to pass on a psychological and developmental one, while knowing — deep down — that there was something in me that set me apart from a lot of my peers: that it was always there, that it will always be there, and I will eventually go back to it.

I did. A lot. I had to ask for extra time. Sometimes I needed further clarification for my tasks. And then, by the time I made to York University, I needed the label and diagnosis to accord me extra time to remain in my Graduate Program just to maintain my full-time status with only half a course load.

Yet that anger, it never goes away. That frustrated, helpless anger. The kind you have in the dark where you can’t talk, or relate. Where you can’t express your emotions. Or the very least, you can’t do any of these things in an acceptable way to the society or space with which you find yourself. People laugh at you. Or bully you. Or worse: sometimes, they just interact with you out of some sense of pity.

So you take those elements of yourself. You face yourself in that mirror much like Red and Adelaide faced each other in that fun house near the beach. You strangle it. You push it down. You chain it to a bunk post, take the T-Shirt, and hope no one realizes that you are an intruder: that you are wrong. But you even when you play along with your parents, as much as possible, even when you find a hobby, find a field to work in and justify your existence — even when you make relationships — that part of you that you thought you could hide, even in plain sight, will always be there. It will always be waiting.

And the society that you grew in? That made you? It does it to control everyone to an extent. It wants you to conform so that you don’t make anyone else comfortable. But it only goes so far. For me, I had all of that “extra help” until I was done with school, or rather school had been done with me.  Then there was no structure, nothing but more antiseptic institutions that arbitrarily help or condemn you like welfare and disability offices and organizations that force you to embrace your disabilities as your identity — the very thing you spend ages attempting to wean yourself away from — while mostly leaving you to wander around like Tethered clones abandoned by their creators when they couldn’t control them, or use them to control others.

The structure is gone. You are just lucky at times to have a place that will still feed and clothe you. And, meanwhile, other people have jobs, families, relationships, and something fulfilling while — often enough — you feel that a lot of them have an emptiness inside of them that mirrors your own, but they are just less honest about it. They have the appearance, the passing, of knowing who they are, and what they are going to be.

And I think at this point, I am talking less about relating to Adelaide and more about relating to the Tethered: to the quiet, angry, sullen, forgotten, grunting, gesticulating horde of people abandoned in the dark, that want more but can’t always find a way to communicate that. And the people above, everyone else who is supposed neurotypical or neuro-conforming? They are part of a society that made you and they are always showing how ideal their lives are in social media, or relying on devices like the Alexa stand-in Ophelia to show how affluent they are. It all sometimes feels like a fun house of distorted reflections, or shadows.

I guess, in this context, I can understand where the fear and the anger, cultivated by Red — by the girl who used to be Adelaide and left to atrophy in her own stunted hatred — would want rise up, while still holding hands together in that Hands Across America gesture from 1986 which is a parody of that superficial sense of belonging that is just, at the end of the day, for appearances. There is nothing sincere about it, nothing warm, or loving. But, in the end it is a gesture of defiance, of anger against the order of things, or the lack of order: of the system’s broken nature.

Just like these words.

So who knows? Maybe a long time ago, I wandered through the dingy, cold hallways of a basement and encountered someone who looked me like having wandered away from falling asleep on a bus, or getting lost not knowing what recess was, and I strangled him and took his place like some changeling in the night. Or perhaps, unlike Red, I actually killed him from the start and — if the conceits of Us are true — then we shared a soul, and that is why I don’t always feel whole. And when you disregard this hypothetical situation as the metaphor it is, there have been many times I’ve had to distance or destroy something in my life to continue to somehow be the person that I want to be.

And sometimes, it doesn’t feel like enough.

Maybe, like the Tethered, I am my own Tethered reflecting the abuses of the unreasonable expectations that I inflicted on myself. And who hasn’t had a time where they have been so angry themselves, hated themselves so much for not performing the way they are expected to, that they don’t want to destroy the system that made these expectations? To burn the whole shallow mess to the ground? Or with a cry of primal, inarticulate rage strangle the part of you that’s angry at yourself, that hates yourself, that you feel is sabotaging both your life, and the relationships of those around like Adelaide, who was Red, finally did to Red who was Adelaide — who she thought she abandoned — in that dark bunk chamber where she thought she left her, her dirty little secret, even her secret in plain sight, for good?

I didn’t even think about it that way, or thought I would write much about this beyond superficial comparisons until I sat down — past five in the morning going six — and realizing just how much this film affected me. Surely there are dark tunnels, and hidden cities in Canada as they are in America. I mean, the North American system probably uses these places, these mentalities, to survive. And I have known people, people I loved or thought I loved, or people who loved me, or I thought loved me — or they thought they loved me — who are so similar to the people that Jordan Peele depict through his version of the doppelgänger as a central monster symbol in Us.

I think it safe to say that, in addition to feeling an affinity to the cognitive difficulties of the Tethered, I have also known, and loved people like Adelaide, and it is amazing how you can be so close to someone because of your shared differences, and so separate from them — and alone — for these exact same characteristics.

I guess I had more to say about Us than I thought beyond the fanfictions, and the film article I wrote a few months back. Certainly, this writing became more personal than even I’d anticipated. At the end of Us, Adelaide reunites with her family after rescuing her son Jason from her double. Jason is her biological son. Learning disabilities and neurodivergence according to some studies are genetic. They are passed down. Jason has always, throughout the film, fidgeted with a broken lighter and loves to hide in a cubbyhole in his grandparents’ cottage. He also prefers to wear a monster mask.

At the end of the film, he seems to realize that his mother is a Tethered, not long after she comes to grips with it herself. She puts her fingers on her lips. Her daughter Zora doesn’t seem to take after her, and her husband still doesn’t understand. Throughout the film, Adelaide is terrified of Jason becoming lost in this world, like she supposedly did, like she actually had been. Jason, for his part, takes his mask and places it back on his face: hiding himself, quiet, yet colourful. Defiant. Adelaide also puts hers back on, but it blends in, it’s unremarkable. She pretends to be mundane again. Jason’s mask, by contrast, still stands out and I think there is something to that. To accept that you are different, and to own it.

Or something to that effect. Personally, I just think that Jason’s monster mask is pretty cool.

Displacement: A Twine About A Learning Disabled Experience

People almost always gravitate towards personal stories. I’ve probably said this already in some way or form, and I know if I haven’t many other people have.

For the longest time, even though I’ve been very busy, I’ve wanted to have an excuse to make another Twine story. I almost did a few times: such as when I was tempted to create a Twine called Bureaucracy Quest in which you have to go on a scavenger hunt of varying documents, while keeping labyrinthine and mandatory appointments, while running into dead-ends and recursive story loops which are specifically designed to make you shut off the Twine from complete and utter frustration. But, fittingly enough, I didn’t have the patience to make this game while living the experiences that inspired it.

It was one night, between other projects I’ve been attempting to work on, that the cynical idea came to me. I was still waiting to hear back from my legal counsel as to whether or not I was going to get on the Ontario Disability Support Program settled out of court, or if I were going to need to attend the hearing that was going to happen this month. The good news is that the community lawyer working on my case was excellent and got me onto this new system. But at the time, I’d been waiting to hear back from ODSP for about a year and I didn’t know what was happening at the time.

There was a series of muscles I must have been holding for over a year, and a few days before I finally heard the decision on the phone from my lawyer, a lot of different elements began to gather in my mind. It began with the first rejection letter I’d ever gotten from ODSP: essentially stating that according to their guidelines I didn’t have a permanent disability.

I had been diagnosed as being learning disabled, as being what nowadays might be called “non-neurotypical” since I was a child. I had to attend special kindergarten, then classes, and then alternate classes. I had an especially hard time in high school: as I only had one class that dealt with learning disabilities and I had to get extra help from the teachers themselves without much in the way of a department to back me up.

My plan was simple. I had gradually weened myself off and away from the programs that I had difficulty completing. I mean, you can imagine how disabilities such as dyscalculia, spatial difficulties, and even challenges in hand-eye coordination and mental focus — in needing finer instructions — can get in the way of mathematics, geometry, fine arts, geography, and even aspects of the hard sciences. Phys. Ed was especially bad for me due to physical coordination issues. So I got through them with the bare minimum. And then I replaced them with philosophy, sociological, historical, and literary courses. I focused on what I was strong in doing: and even then I needed special help with regards to tests and exams.

But I was told, and I hoped, that by University I could take the courses that I wanted and build the education that suited me: making me ready for a career in academics. I was going to focus on my strengths and leave my weaknesses behind. I was going to make it so that my learning disability was irrelevant and I wouldn’t have to identify with it anymore. I believed that I could succeed through sheer merit, through personal work, discipline, and sacrifice: and that, with some help and support behind me, I could excel.

What I didn’t understand, at the time, was that our society is not — and has never been — a meritocracy. It is a bureaucracy: with specific rules and procedures. Networking is also a social skill that is integral to navigating the labyrinth. And while I had instructors and academic representatives that told me about the importance of this element, I just couldn’t relate to it. Not really. Again, I thought it was about what you did and not who you know: or even who knew you.

Then there are the psychological factors to consider. Other kids are hyper-aware of differences and if you have trouble socializing, or counting fast enough, or telling directions, or the fact that you rock back and forth when you are excited or nervous and your hands fidget, or even when you talk to yourself they will notice. They will notice and they will laugh at you, or bully you, or avoid you.

And those are just the children: your peers. I’m not even talking about the adults. Between having my grandfather thinking of my math disability as a sign of laziness, and others snapping at me to stop fidgeting or talking to myself — for fear that I would “look ridiculous” — you can already understand why I’d want to leave that all behind me. You can also more than imagine where a lot of my anger comes from, and where some of my own present difficulties spring.

I was also lucky. My parents recognized that I had cognitive difficulties and got me as much treatment for them as possible. But as such, most of the family emphasis was less on me learning life skills as it was actually succeeding in school: as that was a major difficulty of mine. But it cost me: as by the time I moved out a few years ago, I didn’t really know how to take care of myself. I didn’t really have a stable network of people to help me with that, and I was left to figure out a lot of these things on my own, or deal with people and organizations that gave me basic — or bad — advice and nothing really of substance.

There was a lot of weight on my mind in getting through my Master’s and juggling real life: and I hated, absolutely resented the idea that my learning disabilities — that the make-up of my brain — was still affecting me despite all the calculators and GPSes of the world.

So you can imagine that when I finally swallowed my pride, the first time with Ontario Works, and the second with ODSP that when I got my first rejection letter telling me: “By our guidelines you do not have a permanent disability” that it was the equivalent of a slap to the face.

I had a long time to think about this. It took a while but I had to accept that my disabilities, that my “non-neurotypical” brain are still parts of my life. It took me even longer to embrace the fact that I have to identify what is just another wiring of my brain and experience as a disability: in order to get the current social structure to help me survive it. I thought about all the people that have told me to “suck it up” or just tolerate what I can’t focus on in order to exist. I’ve had to fight against the idea that I am “coping out” when I identify as being learning disabled instead of “earning my place like everyone else”: whatever that means.

And so I decided to call ODSP on its punitive structure. I sent in my forms and my diagnosis from my therapist, which they rejected the first time. I had them do an internal review, in which they found no fault in their decision. And then I faced down a hearing in a game of “Chicken” to see who would give way first. I am a really stubborn person when I have a mind to be. In fact, I do extremely well when I have something passionate and real to focus on instead of settling for something less than.

I’m also aware of how privileged I am. Between my family that actually recognizes learning disabilities and finds itself there for me, to the community counsel that got my case settled out of court, to the best therapist I’ve ever had with or without Canadian OHIP, and a lot of Affirmative Action protocols, I have been exceedingly lucky. And I know that just as all learning disabled people aren’t the same, many others haven’t had — and don’t have — the backgrounds or resources that I do.

But there is one other thing that stuck with me after that experience of having my disability and experiences not acknowledged until I faced them head on. I thought about how we all experience and interact with the world. And that night, a few nights ago, when I was thinking about how best to communicate what it was like to be in the world with a learning disability, I came up with this idea for an interactive story.

I asked myself this: how would someone navigate a world if they had trouble reading maps or telling directions? What would it look like, in words, to see someone with dyscalculia doing equations or basic math? How would I portray the psychological baggage that comes with dealing with these issues since childhood? Can I do all of this and show they have something of a commonality?

And can I communicate my experience — my voice on this — through a creative medium with which I still have limitations? Can I express my story simply through the description of perception and emotion?

I realized, a few days before the bittersweet moment of finally having ODSP recognize that I have a permanent disability, that living with spatial, mathematical, and even body movement issues is like existing out of the same space-time as most people. You are somewhat out of synchronicity with the rest: both cognitively and socially. And that was where I eventually got the name for my story idea the following day.

Displacement.

It’s by no means an exhaustive story about all learning disabilities, or even the different gradations of the ones that I possess. It came out very rough in its first iteration — I had to par down the psychological elements — and even now I think I could have portrayed the experiences of the narrator more effectively: such as using that recursive loop of repeating hyperlinks I mentioned earlier to symbolize getting physically lost. But I also don’t know how accurate that would be and, honestly, I think right now this is as good as it gets.

This will have been my third post dealing with learning disabilities on this Blog: or at least the latest one after my experiences from this past summer. I hope, after this, to go back to writing posts about video games, comics, fictional universes, and projects that I’m working on. Those are the things which I want to be known by and remembered.

That being said, I would like to thank Gaming Pixie for looking over and providing input into the Twine story that I have linked above. Whatever else, I hope you find the story, and this post, educational at the very least.

Week Two, Hell, Awareness, And Readjustment

The title is not what it seems especially when you take into account the graphic that you’re, no doubt, seeing at this time. It’s funny: I could have written this post up earlier in the weekend but one thing I’ve noticed in having a set schedule in the morning now is how much more tired I am when I finally get home, or finally get to the weekend.

There are a lot of things I wanted to do this weekend: like work on my “Serpent and The Fox” or more background material for the game I’m collaborating on: especially the latter after my sessions at LDEEP.

It’s still taking a while for my body to adjust to being up and functioning again at daylight hours: especially during what is now pretty much the summer time. It feels weird. It’s hard to explain really. Sometimes I feel the stress taking over my body and it seems to react on its own. Having IBS also doesn’t help matters and, to be honest, I could really do without it. It can make travel … interesting: especially in traffic.

At the same time, though, it’s not an exaggeration to say that my head has been light and airy. For a few years now I’ve generally only gone outside later in the day and in limited bursts. My interactions with other people were cursory or perfunctionary at best. Sometimes, even now, I need some space and I find that I need to move around in order to feel comfortable in my body in another space as well. I’ve always had that last element in the form of fidgeting: and it manifests through needing to express excitement and channel nervous energy. But I have also been taking it in stride and working through my body to get my tasks finished. I mean, if I have to deal with matters I might as well get as much from doing so as possible. That is my philosophy now.

Right now I have something of a functional resume and cover letter that I plan to use as a foundation to network and from which to create other elements. Chances are, again, I will be looking for collaborations and contract work, but I wouldn’t rule out using these resources from which I would create my own job. It wouldn’t be the first time.

One other nice thing about LDEEP is the fact that a lot of the work we do stays at the centre. This allows me to come home, rest, and even do some of my own creative work. It isn’t always in my face and it has its own place where I can engage it with help. So that structure does help a lot. And I am dealing: still trying to find a balance of work, rest, and eating as I finished the second week of my program.

Also my flip-phone, which was nearly a decade old, dislocated its head and I had to get a new phone. Last week I wrote a GeekPr0n article on the Netflix series Sense8: which might as well be an extended metaphor for wireless, online and long-distance relationships. My new phone is, by necessity of my career plans and current work, linked to the Internet and while the process of getting and programming it — and sometimes unlocking the damned thing — has been stressful, I feel a lot more connected to some of the people I know. It makes things a little better for me and sometimes that’s all you can ask. That said, I’m also getting to know people in my course and even though we are different, it is still nice to get to interact with other people face-to-face.

And now, for the Hell element of this post. It’s not living in daylight again, or going out more, or doing a ton of work, or even readjusting my body. Rather, it is more information about my upcoming published story. Allow me to reintroduce you to DOCTORS IN HELL.

Doctors In Hell Advertisement

It is a beautiful advertisement and I just thought I’d share it with all of you: to show you I am there and that this is happening again. It’s also nice to see my name, with my fellow Hellions, all front and centre. A lot of last week was me filling out an interview and biographies and other minutiae after my days at LDEEP. Each interaction left me with a sense of accomplishment.

My story in Heroes in Hell Volume 18: Doctors in Hell, “Let Us Kill The Spirit of Gravity” continues just after Nietzsche runs into Lilith for the first time. It can be read on its own, but “When You Gaze Into An Abyss” from Poets in Hell is also a nice read, in my relatively biased opinion, before you start this one.

And you can order it on Kindle today. 🙂

In this sense everything here is not so much that a road to hell paved with good intentions, but rather that an idle mind (read an ever-busy mind) is the devil’s workshop. And I am going to keep working in it, and at it. I promise.

I Have A Disability

Disclaimer: This is a post that comes from my experiences but, ultimately, they form my opinion on this matter. As such, this will get into some “life story” content. This is also a very long post, so if you don’t like reading long posts, don’t read this. Reader’s discretion is advised. 

I was going to post about this earlier, but I wanted to have fun first before getting into something so serious and personal. Hopefully we can get back to those fun things later.

A little while ago, I read some articles about gifted children: or children that are considered gifted. More specifically, these articles were written by the adults that these children would one day become. They wrote about a lot of things: how difficult it had been to focus in mainstream classes, behavioural problems some of them had, and the culture shock of being in a gifted class only to have to deal with “the real world.” Some suffered burn-out, or high expectations of reality that didn’t pan out as — for the most part and barring notable exceptions — their gifted statuses didn’t translate into independent adult success.

I wasn’t a gifted student.

In fact, some might tell you that I was on the very opposite end of the spectrum.

I’m what the educational system calls learning disabled. It’s a misnomer in a lot of ways. The way it’s been described to me, it’s more like I have a different form of brain wiring: or, really, I just learn differently. I have great difficulties with mathematics: in the form of dyscalculia. I can add and subtract basic numbers, but multiplication and division can only happen with a calculator. And even adding and subtracting, without a calculator, takes me a while to do: and a lot of mathematical formulas are beyond me. Certainly, it can get in the way of a game of Dungeons & Dragons. I also have spatial difficulties. I literally struggle to read a map and unless I’ve passed through a place several times and know the landmarks, I will get lost. Sometimes, even then I will still get lost. And this doesn’t even go into a lack of focus or attention that I have sometimes: which can lead to a total lack of motivation. I need to move around a lot. I get very stressed out and tense when I have to sit in one space doing one thing for an extended period of time.

All of this really doesn’t sound like much and, indeed, there are people with far more severe disabilities than I. And I was lucky. Early in my childhood, my parents identified and placed me into programs with professionals that could help me adapt as much as I could to mainstream programs and interactions. They knew and accepted what a learning disability is and gave me the help I needed to get the tools to deal with it and one day live an adult life: as much as anyone really can.

I was also lucky in that by elementary school and after a lot of childhood therapy there were various teachers in an administrative capacity that dealt with a lot of the bureaucracy involved with getting me help. All I had to do was focus on the activities and my studies. Aside from a class or two I had outside my main one, I was otherwise like everyone else.

In fact, I improved. I learned how to hide my fidgeting fits and my poor fine-motor coordination. And after years of childhood teasing over not being in touch with my surroundings, or being tricked out of money, I embraced my strengths. I focused on English and literature. I built up and focused on what I could do: and even though I can always improve and learn more, what I can do I do well.

The point is, I had to work — twice as hard — to be better.

I did so well, in fact, that in elementary school I got a Most Improved Student Award along with my best friend at the time. But by high school, things had changed. Suddenly, the onus was on me to deal with math and geography. There was no extra class or space I could do my work and I had to take extra classes and tutorials to get help: to do the work from those classes in addition to the work I needed help with. And high school kids did notice that I was different and they took pains to remind me of that fact. At least by this point, I wasn’t wearing velcro shoes any more: as laces were an anathema to my motor skills at the time. Still, I had extra time for exams, tutoring, and after dropping many of those courses I did what I always did: I focused on my strengths.

I thought by University my learning disability wouldn’t matter any more. And I wanted that to be true. I took the extra help when I could and when it didn’t interfere with my own time. I was facing more and more stress as finished high school and then got into Undergrad. But I found my stride eventually in Humanities and I had this whole plan figured out. I would ride through the stress, take the Tylenols when I needed them for my headaches and Gravols when my stomach bothered me. I would stay in the academic system. I was good at it: in my way.

My plan was simple. I would work in the system, using what aid I had from learning disabilities and Affirmative Action policies at York to rise up through the ranks. I’d graduate Undergrad, then my Master’s and then get my PhD. I would then get a contract and get a position and teach while writing on the side. I figured it all out. I’d focus on my specialization: on the words that I learned to compensate for looking weak to everyone else from my childhood. And I would use it all to gain personal independence and build a life for myself.

I had it all figured out.

There is something else that some gifted and learning disabled students have in common. In addition to learning in different ways from a mainstream program outline, and having different mindsets, we also have trouble dealing with that same culture shock that I mentioned before. And I thought I’d grown immune to that.

It’s true. I’d become a University Graduate and I was working on my Master’s. I even got my Master’s Degree. But as I worked through the stresses of the academic life, the lack of money, and the personal losses and learning experiences of actually living on my own for the first time in my whole life, I realized I’d lost something. It was a sense of guidance: that sense of guidance and understanding that I’d almost always had.

Of course, I’m not talking about an authoritarian sense of guidance: where someone tells you what you can and can’t do all the time. That kind of authority can be necessary when you are a child, but when you want to be an independent adult it can be extremely counter-productive and patronizing. I will get more into that.

These things all fit together. You see I always thought, and I was always taught, that the work was the most important thing: that academic excellence is what you should strive for. It makes sense when it’s a central force in your life at that time and it will, theoretically, become an important element in determining your social status in the future. For me, things like jobs, dealing with bureaucracy, learning how to drive and so on weren’t particularly on the list in the beginning. And despite my parents’ and even my schools’ best efforts, socializing wasn’t really high on my list either.

So I didn’t really network with many people at my University. Most were nice enough, but I just didn’t relate to many of them and I didn’t know how to approach my professors for help. So I didn’t do the networking, or the grant or bursary seeking. I didn’t realize, or want to realize that these things were just as important as writing that thesis: a thesis I didn’t think anyone in the field was interested in, or — deep down — that I thought was worth it. And I think it’s safe to say that from mid-Undergrad to Grad School onward I was getting intensely frustrated with bureaucracy and student loans: with being run around, having my status changed, dealing with illogical government websites, and not having enough money to live on as a Grad student complete with budgeting.

And all I could think of was that when I was younger someone else dealt with this stuff, or it wasn’t even a factor. Yes, adulthood brings adult responsibilities but when most of your life is made up of people helping you deal with these matters so that you can study and keep studying so that you can get a career, you have certain expectations that others in positions of authority will be just as helpful. And some of these people are, and some of them really, really, are not.

I didn’t want to use my learning disability status to help me. I wanted to think I’d grown past it: that I was finally achieving what I sought to do on my own terms. You can read into this however you want. But I have used it, and I still use it because I’ve realized that the system — however broken it may be — has those statuses for a reason and to those who need them.

It wasn’t just my learning disabilities. I have difficulty handling stress. It gathers into my body. Most of the time it’s headaches, but I have stomach problems and, like I said before, I can’t stand sitting down in one place being passive for too long. I was also burning out on academia: fast. And after I moved in with my girlfriend at the time, I was running out of money only at a slightly slower rate.

I had to get a job.

I got my original job through a learning disability organization outside of my university, though I was hired by my merits. My university’s program was a Career Centre one and, as such, only asked me questions about what I wanted to do and offered a whole ton of workshops. By that point I was so burned out from academia and I’d done so little work outside of it that I had nothing really to offer and resumes confused me and I just didn’t feel motivated to go to a workshop — especially after accidentally going to “the wrong workshop” by the administration’s own error — just to do that.

I needed a job almost immediately. At the same time, I wasn’t going to take just any old job. That is not how it works. If I am not interested in what I’m doing, the task will simply not be completed. It won’t happen.

But I still had that drive, right? I wrote stories and tried to publish them but I didn’t know — and to some extent still didn’t know — how to send them in and everything just seemed to take so much energy from me. It was pretty obvious at this time that my stress and frustration was changing from burn-out into depression.

One of the most frustrating and soul-destroying moments for me during this period was having to move out of my girlfriend’s apartment and go to an Ontario Works appointment that we arranged after I went under her ODSP plan that would have paid me $100 dollars a month for volunteer work — with the worker even offering me an adult teaching program for adults — until we could find an actual job together. This was in the Ontario Works branch of Toronto. Ontario Works is designed to be a relatively a short-term social service program that finds you work of some kind in the community. It theoretically encompasses all of the Province of Ontario.

And I was confronted with the fact that my resume, edited by my university’s Career Counselling Services, was more like a CV: with a list of achievements that couldn’t be applied to the outside world. I was told I had to tailor make each resume to match the job I wanted. I was also told by others to “Cold Call” my resumes in a cookie-cutter style. It was confusing and, honestly, I got sick of it really fast.

And that was the last time I dealt with Toronto’s social services and the city’s benefits. I ended up moving back in with my parents. As of right now, I pay rent and I applied to Ontario Works in York Region. I thought that I could have a similar arrangement to them as I did with the Toronto branch. I thought they were integrated.

I thought a lot of things.

What Ontario Works was, and is, is a program that I had to fight to get into. You know that sullen feeling that seethes in your stomach when you’re put on hold and there is nothing you can do about it? I ended up feeling that sensation more than I ever had with National Student Loans: though they would have their turn. I had to prove that I had a disability and phrase it as such. And when I finally did get in, I ended up needing my dad to drive me to their Woodbridge location as their Richmond Hill one, closer to where I live, “wasn’t in the right jurisdiction.” A situation where a person navigating their way to a long-distance location with a spatial disability and stress issues has all the makings of an insanity tale.

Their counsellors are only temporary and they cycle out a lot to take on new clients. I had to full out a long legal size sheet of paper listing all the jobs I applied for: as if my set of skills and interests could easily be found in the newspapers or the Internet. I simply couldn’t fill out all of those papers. Applying for jobs that don’t, ironically, apply to you for the most part plays on that lack of motivation that I was talking about earlier. It becomes a cycle of de-motivation. Some of my counsellors understood this and let it go. But others would phone me up and tell me I wasn’t “doing my part” in the process. None of them suggested any concrete ideas based on talking about my skill set or my leanings. And I had to re-apply — twice — to be exempt from filling out the sheet because I have a learning disability and stress issues: complete with a note from my psychotherapist (who is, by the way, one of the most awesome human beings I’ve ever met).

The York Region branch didn’t have any community services or job workshops I could participate in. After a few years of making appointments whenever was convenient for me, as adults do, I was assigned appointments with my status in Ontario Works always on the line if I couldn’t show up. I even got some pre-generated punitive letters from time to time stating that I was suspended from the program when, in fact, I met their specifications.

And I’m not even talking about my National Student Loans. University costs money, as does living on residence. Being on social assistance makes sure I don’t have to pay the government money that I don’t have, while theoretically helping me get a job with some benefits to do so. It got to a point, up until fairly recently, where I would wake up almost every weekday with dread coiling in my intestines: wondering if a voice message was left on my phone, or if I got a letter from NSL or OW.

Recently, I’ve been trying to apply for ODSP: which is specifically a government social service that deals with people that have disabilities. So far, I’ve been rejected: on the grounds that I don’t have a recurrent or permanent disability.

Even though I’ve been diagnosed as having both, and I had a doctor’s note. They invited me to write them a letter for an internal review. I can’t begin to tell you how hard it was to write that letter. It felt like NSL all over again where I was applying to go further into debt: except this time I felt like I was arguing that I was crippled in some way: that I wasn’t a complete person. One thing I was taught in school, no matter what direct help I was given, as that being learning disabled isn’t about what you lack, or what kind of deficiencies you have: it’s the fact that you just learn differently and you need other strategies to deal with the obstacles in your way.

So here I was: taking a lifetime of being taught that I could help myself — to the point of getting a Master’s Degree — and being told, now, that the only way I could get the help I needed was to tell them about how ruined I was.

And I did. I told them about the nature of my disability and how it manifests. I told them about the stress I suffer from and how it manifests physically. I even went as far as to give them examples of how this would affect me in most job situations. And, after a while, that sullen anger I’d been feeling became this righteous fury towards a broken system. But my words were cordial, even polite. Even though I was sure nothing would come of it, perhaps nothing will come of it even now, I used my words to take what was there — in me — to help me.

And oh, I wanted to tell them the rest of it. I wanted to tell them about the life I had in Toronto. I wanted to tell them about the loneliness and the peaceful solitude I had in my own apartment. I wanted to tell them how my girlfriend at the time used to tease me about being “independent in the city” and how it chagrined me and made me proud.  I wanted to show them the stories I wrote and the essays I made in my own place. I wanted to tell them about the dreams I had for my university life that never happened, or could have happened, or almost happened. Or how I could come and go with sheer impunity. Or how I explored down town Toronto for new opportunities and to discover new people, and to grow into a better person.

I wanted to tell them about my triumphs and my failures. I wanted to show them that I am a human being and that I gradually retreated from Toronto and that whole other into a small little box of memories and regret that I only occasionally leave: all the while envying the other people who “made it” and dreaming about those times when my life was better, when it was expanding … when I actually had one.

Do you want to know what one of the most important moment in my life was? I think you’d actually be surprised. Almost all my life, even though I didn’t live in Toronto proper I had access to the Toronto Public Library. That place contained the largest amount of books that became my life. And every Saturday I’d go to a branch and get a new book. So when I moved out of the Greater Toronto Area and moved into Toronto itself I realized that I could, for the first time in my whole life, get myself my own card.

And I did. It had my name on it and everything. I took out books and comics. I read them on the TTC, in my apartment, at my girlfriend’s, and everywhere. For the first time, despite the schizophrenic nature of living in and feeling detached from Toronto, I felt like I could belong.

But I don’t own property in Toronto. I don’t go to school in Toronto any more. I don’t work in Toronto any more. And I don’t live in Toronto. Any more.

So I lost my card.

A good part of me died that day. And I became a ghost: remembering all the times when I was still, fully, alive.

It got so bad I sometimes felt tempted to re-enrol in school: to go for that PhD program I used to dream about even if a Degree didn’t guarantee me a job, or a position in today’s market, or if the thought of even more deadlines looming over my head didn’t terrify me. Even if it only bought me a little more time and would never get back the life I had before.

My Mythic Bios saved me. It made me into a writing ghost: of which I can see where a certain pun or turn of phrase might come in. I wrote: keeping as much of my life away from here as possible. I wanted a space where I wasn’t a failure, where I wasn’t bound, or held down into one place. And sometimes, I wasn’t always a ghost. Sometimes, like Tiresias I got to drink the vitality of imagination and companionship and I had inspiration and vision again. I could believe that I was alive and that my body wasn’t a liability.

I’ve accomplished a lot of good things during this time when all these other elements were happening in the background. I published a story, I published some articles, and I started writing for an online geek magazine. I networked and I even made some new friends. I realized that this place, right now, even without money or steady employment isn’t hell because I’ve written about hell and there are still some chances here.

There is something else you need to understand about having a learning disability and, again, it was something taught to me in school. In addition to problem solving, I was also encouraged to ask for help. I think one of the most difficult challenges in being an adult with a learning disability in addition to all the other gritty and uncomfortable adult things is the fact that I didn’t feel like I had an advocate.

An advocate is different from having a teacher or a counsellor. A teacher will show you how to do something, but will ultimately have you do it. A counsellor will advise you or tell you the status quo or the party line and stick to the minutiae of the system. But an advocate can not only teach you, or advise you, or know how the system works but they will listen to you and stand beside you in getting to that place that you need to be.

I haven’t really had an advocate of that level since childhood. But I might be getting one like that right now. For the first time in ages, I don’t feel the dread coiling inside of me. Just yesterday, I turned thirty-three. I’ve been unemployed, but working and trying to find my way — trying to find a focus — for almost three years.

I’m still scared, but in the sense that I know there will be challenges that I’m going to have to face: that I’ve always faced. I am going to need to deal with this world and its realities of rules and regulations. But maybe I won’t have to do it alone. There are already people behind me but maybe, just maybe I can take those obstacles that I have been in my way and turn them into goals, into goal posts until — eventually, I get to where I need to be.

Now, if you’ll excuse me, I have to go sleep now. Tomorrow, I have an appointment to keep.

Looking Outward