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.
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.