Saturday, July 27, 2013

Extra Baggage

Tonight, I've been thinking about bags.

Part of living with diabetes and low vision is all the "gear" that needs to be carried around on a daily basis. I mean, most people can leave the house with their keys, wallet, and cell phone at a minimum and get through the day relatively fine. With diabetes, throw in a glucose meter kit, emergency carbohydrates, insulin pens or a pump, backup supplies (for pumps), and other miscellaneous gear such as a means of record-keeping. With low vision, throw in a monocular, magnifier, sunglasses, and a cane. With allergies, throw in Benadryl and other antihistamines, tissues, an inhaler, and an EpiPen.

And then throw in any of the other necessary extra stuff, such as an iPad or e-book reader—if you have room. Not to mention lunch!

This afternoon I went shopping for a DSLR bag, in hopes that I will bring my camera more places, and it has involved a fair amount of watching YouTube, reading reviews, and making comparisons. I settled on a bag that is larger than what I need for my camera gear, but has the room I need for all that "extra" stuff (and room to grow should I purchase another lens or two). Tonight, I began thinking about revamping my enormous swim bag into something more manageable, and did a quick Amazon search for some ideas. I am always after the most compact means of carrying my stuff, and with all this thinking about bags I also began thinking about how I could easily transfer my essentials from my everyday bag to my camera or swimming bag.

One of my biggest challenges is deciding what is reasonable to carry with me on particular outings and what is overkill. Do I really need to bring my EpiPen when I'm just going swimming at the local pool or going for a walk through the park? On one hand, I don't plan on eating anything other than what I brought. On the other hand, allergic reactions are never planned. I'm allergic to more than just food, things like pollens (trees, grass, weeds), animals (cats and dogs and feathers), dust and dust mites, mould, tobacco smoke, and mosquitoes, most of which are impossible to completely avoid. I get hives from petting cats and dogs and from touching potatoes, and have had situations where I've had to leave an environment because just breathing in steam from potatoes makes me feel allergic. Is the convenience of saving a small amount of space worth the small risk that I may have a life-threatening allergic reaction during an activity as sheltered as swimming? What if some random kid sitting next to me on the bus spills his bag of potato chips in my lap?

An EpiPen takes up a small amount of space. But when you repeat this for a dozen different pieces of "essential" gear, that space can add up quickly.

I went through a period where I had whittled my "essentials" down so much that the only backup pump supplies I carried on a daily basis was a filled insulin pen and a few needles. Everyone with diabetes knows that low blood sugar can come out of nowhere, and glucose tablets (and backup glucose tablets) are one thing I am never without. But, like an EpiPen, backup pump supplies aren't needed on anywhere near a daily basis, and can take up a lot of space. This worked for a while—until I actually found myself at work one day with a failed infusion site and rapidly climbing blood sugar. At the time I covered with injections, but after repeating that routine several times at work and other locations I've begun to carry a spare infusion set and cartridge with me at all times.

In terms of my low vision gear, I typically pack a monocular, a Compact Mini (a small video magnifier), sunglasses, and of course my cane, although that's mostly in my hand and not in my bag. Still, this is delicate equipment, and my bags in the past have been stuffed so full that LCD screens have been cracked (thankfully on a point-and-shoot camera, not my video magnifier) and sunglasses have been crushed. I've tried leaving some items, such as the monocular, at home ... but without fail, Murphy's Law means that on those occasions I invariably end up on and unfamiliar street corner with sparse pedestrian or vehicular traffic, a situation where a monocular is invaluable for me. And so, I end up counting all these items as essential.

I do make some compromises on what I carry. I only carry one EpiPen with me, even though most sources recommend carrying two. I don't carry a glucagon kit around on a daily basis, even though there is a chance I may someday need it. I don't carry some things, like my reading glasses, on a daily basis even though I occasionally find myself wishing I had them. I carry about as much medical gear to survive for roughly two days—assuming nothing in the bag is lost or damaged—and just hope I never encounter a disaster that calls on me to survive for longer. I live in an earthquake zone, and on occasion I'll see articles or PSAs about how everyone should have a kit that would enable them to survive for 72 hours unassisted in their homes and cars. That's a tall order for someone who uses public transit, but after seeing numerous natural disasters occur in populated areas over the past few years, I've decided that it's not so far-fetched that I could get stranded across the city for a night or two.

Often, especially on days when I have to bring a lunch or something like my iPad or BrailleNote with me, I end up carrying two bags. Sometimes, I feel like a pack mule, especially if I also stop at the grocery store on the way home and end up with a few bags of produce in addition to my original load. I have tried backpacks, but don't favour them because they can get awkward on crowded public transit, and I invariably end up whacking someone in the face when attempting to sit, stand, or turn. My current project is to find a way of packing lunch that makes it small enough to fit inside my bag, so that I have that one less thing to carry on my daily commute.

Evidently, I do a fairly good job of packing large amounts of gear into relatively small bags. Every time someone picks up my bag they go, "Wow, what do you have in here?!" I'm sure they don't really want to know--that would involve going into my entire medical history--but I assure them that, no, I really can't go without anything in the bag. Now, to solve the issue of quickly transferring essentials from one pack to another without forgetting something ...

Tuesday, July 16, 2013

Why I Am Not Amazing

The other day, on my commute home from work, I stood on the train as it sped down its elevated tracks, trying to avoid toppling over and simultaneously protect the camera around my neck. A man standing next to me asked if I wanted a seat, which I declined. We stood in silence for a few moments, and I sensed from his body language that he was staring at me out of the corner of his eye, his gaze shifting between the white cane I held in one hand to the bulky DSLR camera slung around my neck. I imagined his mind whirring, wanting to say something but not knowing how. The next time the train lurched on its way out of a station I grabbed a handrail for support. He asked if I was sure I didn't want a seat, and partly intentionally I said, "No, thanks. I'm just off balance from carrying these two bags plus the camera."

"Ah," he said. Then a moment of silence. "How, uh ... how do you take pictures?" There! Ice successfully broken.

I smiled and told him that I use autofocus a lot, and also had the camera's buttons and menus memorized. (A half truth, since I haven't yet had as much time to dedicate to learning photography and to use this camera as I would like.)

"Wow," he said softly. "That's amazing."

I (and the things I do) get called "amazing" with some regularity; and anyone who knows me well can tell you that I hate having the term applied to me. Not due to any issue of personal offence, but rather to an issue of societal attitude. Inspirational, sure. I can grin and bear it. We all find inspiration in different things, whether it be a mountain or a baby or a poem. But amazing is different. Amazing implies something startlingly impressive and rarely achieved.

None of the things I'm called amazing for are, in fact, actually amazing. Some of them are impressive, a show of dedication or skill, but all are everyday things that hundreds, thousands, even millions of people are expected to do without much fanfare, if any. I can't imagine someone being told they are amazing for reading ... or for commuting from home to work ... (or even having a job to go to in the first place!) ... or for completing a routine university degree. Even photography—although perhaps not the most common or well-known hobby—has an active community of blind photographers, and I know many individuals who are legally blind and own DSLR cameras.

I've been called amazing for all of these things and more. Whenever I get comments about being amazing and I reply that I'm actually not, people think I'm being meek and humble, although that's not the case. The truth is that I really don't think any of the things I do are amazing, and I wish society didn't treat them as if they were.

Why? Because it lowers expectations.

The next step up from "amazing" is nigh impossible. Doing something at the pinnacle of human achievement, whether athletic, intellectual, or artistic, is amazing. Only extraordinary people do amazing things. Doing an everyday task that most non-disabled people do routinely should not be considered an amazing feat.

The biggest tragedy of being born blind is not blindness itself, nor even being born into a world that is largely inaccessible. The biggest tragedy of blindness is that society's expectations are immediately lowered so much. If not by parents, then by teachers, or employers, or just the societal milieu in general. This shouldn't be the case. And calling someone "amazing" for doing a rather mundane task does nothing except reinforce these lower expectations.

If someone is consistently being told they are doing well—even if they may, in fact, be performing well below average—they will be apt to stop trying, stop pushing themselves to achieve a higher goal. If reading braille even slowly, doing the most basic of tasks on the computer with screen reading software, or crossing an intersection using a white cane are amazing tasks, then what of completing a doctorate degree, becoming a software engineer, or travelling the world?

The attitude that everyday tasks, done without vision, are amazing is harmful to everyone involved. It's harmful to parents of children who are born blind, who may become overprotective and fearful of their child's future. It's harmful for children themselves, who are just beginning to understand the cultural stereotypes that surround blindness. It's harmful for young adults, who find themselves wondering if it's possible for them to become a tradesperson or keep up with a university courseload. It's harmful to the blind adult who, eventually, may come to doubt even their own abilities, creating a self-fulfilling prophecy.

It's harmful to people who are sighted, too. It's harmful to employers, who may pass over an applicant with a visual impairment because they wonder how they will get to and from work (never mind do the job they are applying for). In the same way, it's harmful to anyone who interacts with individuals who are blind (or have any disability) in the community, who may wonder how they can safely participate in a program. And, most of all, it's harmful to adults who are themselves facing blindness, and with it are facing what is for many the most scary experience of their life. If reading braille, and navigating a city, and living independently are so amazing, how will they ever believe that they can achieve these things. To say nothing of going back to work or school, taking a vacation independently, or hosting a house party.

This is not just a "what if" scenario. At gatherings with many blind individuals, the question asked upon meeting another person is often not, "What do you do [for a living]?" but rather, "Do you work?" Although factors such as (lack of) accessibility and support services, among others, plays a role in the high unemployment rate, so does attitude—on the part of both the employer and the employee. Both have to be willing to put in the work, yes; both also need to believe that the job, whatever it is, can be done.

Not to say being blind or visually impaired is easy. In fact, my attitude is that it often takes more work on account of overcoming accessibility barriers, but that extra work is just something I need to do. Just because I have to work harder at something doesn't mean I should simply lower my expectations and never expect to accomplish it, and nor does it make the accomplishment any more amazing once complete. Unless it really is amazing, like winning a medal at the Olympics, which is an accomplishment most people will never achieve. The reality is that low expectations are often the norm, and normal expectations are often considered amazing by society as a whole. This should not be the case, no matter what the disability.

And that is why I am not amazing for reading, for living alone, for going to graduate school, for working full-time, for choosing hobbies such as photography and programming. I shouldn't be amazing for doing these things. These should be normal and expected, not extraordinary! Inspirational, perhaps, if someone chooses to find inspiration in such things. But normal, not amazing.

Monday, July 1, 2013

Some Brief Thoughts on Canada Day

Today is Canada Day. This year, Canada celebrates its 146th birthday. A pretty new country, in the grand scheme of things. Every day, were I to stop and consider it, I am grateful for being born Canadian; on July 1 my fellow Canadians and I are especially proud (some recent political events aside ...).

Earlier today, someone posted a link on Facebook to a blog post about 50 gifts Canada has given the world. I clicked, and to my pleasure I saw that insulin topped the list. Not only do I live in a country where my basic medical needs will be met regardless of my economic situation, but if it weren't for this Canadian discovery in 1922, I would not be alive today.

In addition to insulin, I learned that a Canadian with low vision invented the first computerized braille translation system in the early 1970s. These days, virtually all braille production is done this way. Among other scientific and medical inventions like the electron microscope and pacemaker, and everyday objects like garbage bags and alkaline batteries, life could be very different without Canada around.

And with those brief thoughts, I'll wish a Happy Canada Day to all my fellow Canadians!