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

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About matthewkirshenblatt

I am a writer and blogger living in the Greater Toronto Area of Ontario in Canada. When I'm not writing for the Sequart Research & Literacy Organization and GeekPr0n, I tend to write science-fiction, epic fantasy, horror, literary and mythological revisionisms, and generally weird fiction stories though I have been known to make poetry, television and comic book scripts. Also, when left to my own devices I tend to write weird and strange hybrid creative opinion piece articles like those you will find on this Blog. I am also very interested in comics, video games, Star Wars, table-top role-playing games, Neil Gaiman's works, H.P. Lovecraft, vampires, zombies, and budgies.
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3 Responses to I Have A Disability

  1. Pingback: It’s Almost Time Now | Mythic Bios

  2. Dylan Waddle says:

    Your story is so inspiring. I can’t thank you enough for sharing it. I’m in college, and I’m having trouble deciding exactly what to do with my life. However, you gave me some encouragement to push through and do my best! Your words move me. Thanks again. I wish the best for you in your endeavors. Be strong.

    • Hi Dylan:

      Wow. I’m glad that you have gained some inspiration from this piece. It seems as though we have quite a lot of work ahead of us, but it is my hope that we will persevere. You don’t have to decide everything in college. When I used to go to University I changed my own Major at least three times before some soul-searching and finding the right fit. You’ll also find that after you leave college you will be doing the same: that you will still have to figure out what to do with your life: just with a few more critical tools that are hopefully at your disposal.

      But you’re welcome and thank you for your own encouragement.

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