Not dis/abled enough

As I’ve mentioned before, I don’t know how I should be labeling myself between able-bodied and dis/abled because I tend to fluctuate. It seems on some days things are better (=easier) than others.

Given that my bones are now fused, I am considered “healed,” and by that marker should be pain-free most of the time.

Apparently that was not to be. From Wednesday to Saturday I seem to have been in a flare (note this link is for RA, which I don’t have [I have OA {also note I am under 60 (I was diagnosed with OA when I was 24!)}], but there seem to be similarities with how my body responds). I’m not entirely sure what caused it: maybe it was because of the change in weather (accumulation, humidity, and pressure I think, but maybe too much/lack of sleep, the alignment of the planets, my stepping on an ant on May 17th 2006…who knows). This flare meant I had to forego the regular OTC meds, and move on to stronger painkillers.  These painkillers are strong enough that it’s difficult to do stuff.

I was on a submission deadline, and since I never know how long a flare will last I tried to power through. Doing academic work on painkillers meant for “moderate to severe pain” is like trying to do scholarly(ish?) writing somewhere between being buzzed and really drunk. You’ve more or less got the ability and attention span of a goldfish who is trying to figure out a semester’s worth of reading in their quantum mechanics textbook.

So let’s just say it took me seven hours to write 300 disorganized words, because it did. You know that feeling you get in your gut when you know you’re doing something wrong and know you can produce something better but don’t know how to fix it so you keep trying to go forward? Writing was like that. Thankfully I had folks offer to read over what I had completed (thank you especially to Teej!!), and that allowed me to articulate what wasn’t working.

All of this is to say that I think that pain is going to be A Thing I will always be trying to negotiate for the rest of my life.  The surgery helped, yes, but I’m still not at a “normal” level of function because I need to build up muscle and whatnot.

As per my school’s policy, I had to get assessed by a doctor in order to get my academic accommodations approved (= my institution not getting mad if I’m not completing things quickly [something that will be more and more of an issue as I take longer in the program to progress]). I saw one in the fall (pre-surgery) and they wrote a medical letter of accommodation stating that my syndactyly is permanent (congenital malformations typically not disappearing) and will impact me in some way(s) for the rest of my life, though my forthcoming surgery would outline what my quality of like for the future would look like. That letter was deemed fine by the accessibility office but I needed one from a specialist with a better understanding of my conditions to apply for provincial loans as is required by their office policies. My surgeon wrote a similar letter in December outlining the same thing as the GP, but added that they would need to wait until at least March to really know how permanent my chronic pain would be. Again, the accessibility office was fine with that, knowing there was nothing “for sure” with me, given OA isn’t something that happens to younger folks that frequently.

About a month before my surgery, I started looking into how the federal government designated someone as having a permanent disability. I’m still not entirely sure what the difference is between a chronic condition and a disabling condition, since chronic conditions can disable, and disabling conditions are from what I understand overwhelmingly chronic. The Canadian government being  the government, they are pretty glib on explicitly stating what is or is not considered a disability. I decided to see if I was eligible for the Disability Tax Credit, as a starting point because they have an online quiz.

I don’t meet most of the requirements, but was curious about the one for dressing oneself. Recall there are certain things that are painful and/or I really, really struggle with. I have a coat whose zipper that has been stuck for over a week, for example. Another example is the fact that I wear yoga pants a lot (when I leave my apartment, otherwise I mostly wear pajamas) in part because they aren’t painful/a pain in the ass for me to put on (also useful for me going to yoga..oh wait no I don’t do that because I find yoga ableist as hell [and problematic for a number of other reasons]) . Apparently according to the federal government, I am not disabled enough:

A person is considered markedly restricted in dressing if, all or substantially all the time (at least 90% of the time), he or she is unable or requires an inordinate amount of time to dress himself or herself, even with appropriate therapy, medication, and devices.

[…]

Dressing oneself does not include identifying, finding, shopping for or otherwise procuring clothing.

Devices for dressing include specialized buttonhooks, long-handled shoehorns, grab rails, safety pulls, and other such devices.

Examples of markedly restricted in dressing:

  • The person cannot dress without daily assistance from another person.
  • Due to pain, stiffness, and decreased dexterity, the person requires an inordinate amount of time to dress on a daily basis.

I wasn’t particularly shocked that I wasn’t eligible for the DTC, but I am still amazed that “markedly restricted” means at least 90% of the time. I’m also not entirely sure what exactly pain means to the government: is pain what might be equated with muscle soreness, or is it at a level where it makes you nauseated (which was me on Thursday)? Ambiguity like this frustrates me.

Friday I got the results of my provincial assessment back. Incidentally because of when I switched my residency, I had to apply to my previous province of residence first. If they rejected me for funding I could apply for where I live currently.

My doctor’s note evidently did not satisfy the province’s requirements, “and cannot be accepted to satisfy permanent disability documentation” nor apparently did it outline the requirements for temporary disability. So my documentation and file for student loans–that I need to be eligible for in order to meet the accessibility office’s requirements–is being processed as if I were an able-bodied student.

This is the thing. I’m not fully able-bodied; I never have been and my abilities are now compromised in comparison to where they were when I was younger. But, I am not dis/abled enough to need help according to the government.

At the same time there is a reason, dearest provincial government, why certain teachers did not accommodate some of my inabilities (= my dis/ability) in gym testing and why I didn’t make the basketball team (weak dribbler on one side) or the volley ball team (not a great volley-er) despite my being markedly more skilled than my peers in other areas for those sports. I’m ordinary enough to fail things I physically cannot do, but too disabled to be given a chance otherwise. Who certified those teachers? You. The irony is not lost on me here, no, not one bit.

In school, I was damned if did, damned if I didn’t. Really fun to recognize when you’re nine or ten years old, and see it keep happening to you until you finish eighth grade, by the way. (Luckily this didn’t happen to me in high school, even when I wrestled for a season).

I started my application in August. Nearly six months ago. Hopefully I get the final decision back from the MTCU in the next week or so (by mail, because I have no way of finding out what password I used in 2004 without sending in proof of my identity that the office has now lost not once, but twice). This has been a bureaucratic nightmare. Full stop.

All of the above is to say is if I was not a student, I don’t think I would be employed right now. The time off I would have needed in the last fourteen months to recover in addition to being in pain/ill from the painkillers/ill from being in pain before and after the surgeries would likely have meant I would have been let go or fired. In a lot of workplaces, if you’re not able to work a regular work week you do not have a job. I’ve been thinking about that a lot lately.

I feel really grateful right now that I’m being funded by a major award because I haven’t been able to work regularly this year. But there are a whole lot of unknowns I am going to have to face in the next nine months, and frankly this constant state of uncertainty is getting more and more taxing. I want to get this degree over with (I am too stubborn to give up [and my completion will also be a big “FUCK YOU” to a number of people, and, well, I’m petty and vengeful]), but I can only work on my degree if I’m not sick.

I guess I need to try and be a little bit more patient–probably mostly with myself–and not worry so much that I am turning into a dragon constantly eating its own tail. Or that stupid leopard. One slowly moving, crystal ball-free day at a time.

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This entry was posted in Diss/ability, Personal, PhDing (in doubt) and tagged , , , , , , , . Bookmark the permalink.

2 Responses to Not dis/abled enough

  1. Pingback: Representation is Important | danielle dissertates

  2. Pingback: Conferencing While Dis/abled | danielle dissertates

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