disclosure update / new jobs! | Identity Doctor, Inc. & University of Alberta

My full disclosure statement can be found here, and is updated each time I undergo a change in partnerships, specifically/especially ones in which I have an online presence or may be of greater impact to individuals reading this blog (like how I disclose the heck out of asthma related things because every group is somehow intertwined and I am kind of heavily invested in that subject).

My Identity Doctor (/Identity Doctor, Inc.)
Community Outreach Coordinator 

As of yesterday (01/08/15), I re-entered an agreement with Jon at My Identity Doctor. This time, I’ll be doing some community engagement work for his online medical ID jewelry company (I’ve worked with Jon before, and you can find this on my disclosures page). The bulk of this position will include me researching and reaching out to potential MID partners—patient support communities, both online and off, whose members could benefit from wearing medical identification jewellery—and providing them discounts to help them encourage discussion [and action] among their members to protect their wellbeing by wearing medical identification. (If you’re now an intrigued community leader/moderator, or have questions or concerns about this, shoot me an e-mail.)

University of Alberta – Pulmonary Research Group
Research Associate 

Today (busy week!) I had a follow-up phone call solidifying an offer of a Research Assistant position with the University of Alberta’s Pulmonary Research Group. While there may be some overlap with my role as the Canadian Severe Asthma Network Patient Lead, I’m very excited that I will be (remotely) assisting with a variety of aspects of an asthma research study, as directed by the study’s Primary Investigator, Dr. Dilini Vethanayagam.

 

Here’s to new horizons! As always, any questions about these, or any of my partnerships, check out my disclosure statement first for the whole story, and drop me an e-mail if you still have curiosities for me to address.

“quantify this” thursday: lark and other fun.

After upgrading to the iPhone 6 in December, I began to discover a bunch of apps that I couldn’t use, or couldn’t use effectively, with the iPhone 4. Even though I’ve been a Fitbit user since January 2012 […That is three years, people], I can finally sync it through my phone–which, I suppose if I were back in the lifestyle of walking to and from the bus all the time, and/or it was not winter and I could find any sort of motivation to go outside into the polar vortex, would be quite helpful.

That little comment about the polar vortex, however, is why I find value in self-tracking. In October, I attempted to chronicle a bunch of facets of the self-tracking I was doing, and intended to focus on throughout the month, aiming to blog every day. I didn’t complete the month-long project that I called “quantify this.” (underscoring that when research suggests not to undergo a bunch of changes at once, it is accurate for most of us), however, even since falling off the intensity of the project, I have continued to dig deeper into the myriad of quantified self tools about, and continue to keep these integrated in my everyday—to an extent, at least.

The biggest difference between the iPhone 4 and 6 (aside from the size, and the speed, and the Bluetooth LE capabilities and the camera and, okay you get it) is the motion processor.

Which means not only do I wear a Fitbit, my phone can now track movement. [And also I have a Pebble watch now, so I have Misfit on there—a post for another day. Related: I am out of control here.] While I purchased the Sync Solver app to feed my Fitbit data into HealthKit, not everything uses that data over the M8 data.

Including this cute little app called Lark which is actually pretty successful at making me conscious of my daily choices. Lark uses the M8 (or whatever M# processor your iPhone has) to grab data from Health (or otherwise, I would assume), and helps you identify patterns in your physical activity…

Edit/Note: Before I get too far, Lark is available for iOS and Android (Google Play and Galaxy). Thanks to Jay for the Droid links!

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…while giving other feedback on health science—clearing misconceptions and providing a bit of research-driven motivation:

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(The answers for the first question were “yeah” or “not really”. Lark gives the same feedback in a different way regardless of the choice made :).)

Lark asks questions and provides motivation by reminding you of previous feedback given within the app—most often multiple choice, but sometimes fill-in-the-blank answers—and encourages more mindful choices surrounding daily actions.


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(Another time, it used a spin on this to tell me that if I drank more water, I’d get more physical activity by going to the bathroom more. Also, clearly this thing magically knows I don’t drink enough water…)

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And, the old classic, of course—parking farther away. (The little super picture makes an appearance every so often—never fails to make me smile).

Speaking of smiling—Lark isn’t just about physical activity:

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While it’s nowhere near close to a food journal (that’s too much bulk for Lark!), it does encourage increased consciousness of attitudes surrounding eating—providing a few choices so to keep it quick.

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I thought I wouldn’t stick with the check-ins on Lark, but I’ve been using the app for several weeks now, and I find myself checking in with the app (read: checking in with myself) at least twice a day. Most check-ins take no more than a minute or two—and amusing for me in my current nightowl state, Lark has much briefer conversations with me when it’s getting to be later at night (because it knows I should be sleeping?)
Or this one, where it’s 2 AM and it’s like “Sleep is helpful, y’know”. (Continuation of the “detox” conversation above.)
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And of course, I was hitting up Lark through the holidays—the first time it brought up the holidays, I was pretty impressed, to be honest! :]

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As I said, Lark check-ins take no more than a minute or two, and while the graphs aren’t anything like this…
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I think they might be (almost) better at encouraging day-to-day behaviour change than getting inundated with data.
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I mean… Almost. I am a bit of a data freak, after all.

post secondary with disability or chronic disease: an introduction to accommodations for accessible learning

Diagnosed with learning and attention issues during my fourth (of five) year of university, I have said before that having my psychoeducational assessment done is one of the best things I ever did—next to that, was taking that next intimidating step to receive accommodations for the learning and attention issues that were brought to my awareness in a clinical fashion no more than 24 hours earlier. I have nothing but good to say about my experiences from that point forward receiving accommodations as a student with a disability. The other day, my friend Jenni posted on Facebook about her apprehensions surrounding taking the advice that she contact student disability services at her university.

While not intending to reinvent old posts (you can read those here), I’d like to summarize [or expand] the conversation I had with Jenni in the form of a hopefully usable rundown: of the help I have, or have heard first-hand stories of, people receiving from their post-secondary institutions, so that students with a variety of disabilities can consider for themselves whether or not these may work for them, and see if their campus offers such accommodations (or would consider adding them to their options).

Intimidation is normal.

Perhaps students who have been dealing with accommodations for their whole lives will feel more at-ease discussing their needs to university staff (I’ll be using the term university, but this applies to all post-secondary institutions)—or, it may be intimidating to move out of the familiar school system and into navigating the post-secondary environment. From my experience speaking with students newly accessing accommodations in university, these students can often feel very intimidated to take the first steps OR to self-advocate.

Self-advocacy (or, simply, sticking up for yourself and communicating what you need!) can be made more challenging with certain disabilities, or if a student don’t have much experience self-advocating. Accessibility/disability services staff deal with students with disabilities every day. If you don’t know what to say, that is okay. In my experience, I was simply asked questions so that it could be better understood what I might need to make my university experience more successful.

Bring Documentation

If you do one thing to prepare for your meeting with the necessary people on campus, bring documentation of your diagnosis. If you have a psychoeducational assessment report, bring that (they usually need to be done within the previous five years, but your campus may vary). If you have a chronic medical condition, or take medication that may affect your ability to learn, attend class, or sit in standard classroom seating, bring that documentation. They can’t help you if they don’t know what you’re dealing with!

Self-Advocate!

If you struggle to communicate your thoughts verbally (or freeze under pressure), you might consider requesting to make accommodation arrangements by e-mail, or provide a list to the person you are meeting with what areas you struggle with or ideas you have. Accommodations are meant to level the playing field, not provide an advantage. With that said, I have had a lot of success with trial-and-error: “Could we try [x]?” “I’ve heard this work for someone else in similar circumstances, is that an option we could try?”

Remember, it’s about you, but it’s about forming allies—we can be an important word! It’s always worth a try: the worst they can do is say no—and in that case, you’re not any further behind than when you started, you’ve just learned more about yourself, your circumstances, and what might be able to be done in the future if plan A doesn’t work out. (Look, my plan C for anatomy wasn’t even my plan and it’s the one that ended up working—be OPEN and people will be open to your suggestions, too!).

As well, it’s important to be as transparent as you feel comfortable with: student support staff are trying to help you, and they have probably heard everything before anyways. Anything you say will be kept confidential, and if—like many of us—you are feeling overly emotional surrounding discussing your disability or chronic disease, that is okay. I know that I am not the only person ever to have cried in our kickass accessibility advisor, Jess’s, office, and I’m sure someone else has cried in there since I last did, too. The last time I wrote an anatomy exam (my last anatomy exam ever) I was visibly shaken up and Jess invited me in to hear office to talk before the exam—when I declined, she said that if I needed to, I could leave the exam at any point and go see her or just take a walk. Yes, we often don’t want to be vulnerable, but that vulnerability was what I needed to push me through that exam, knowing I had the freedom to take a break if I needed to—and that I was supported. People supporting students with disabilities aren’t afraid to think outside the box—don’t be afraid to encourage them to!

My university provided letters of introduction to students for their instructors/professors upon request. These were meant to start the conversation between the student and the faculty member, and provide an official way to communicate which accommodations were in place for the student in a clear way, without divulging information about the student’s disability. I used these for most of my classes, and was grateful for their existence—it changed a really potentially awkward conversation to “Hi, I’m Kerri [I e-mailed you for the syllabus three weeks ago for my alternate format texts…], I have this letter of introduction from accessibility services outlining the accommodations I have.” If I felt it was necessary, I followed up a few days later, because I’m an open book, but it was rare anybody asked questions—they kind of can’t.

Common Accommodations

Access to Food/Drinks

If you have a medical condition that requires you to eat at regular times to avoid negative health effects, it can be arranged to allow you to have access to these items immediately (or in a timely fashion—as my friend Teigan pointed out, it may be hazardous in some classroom environments, and plans can be made for this).

Allergy/Sensitivity Awareness

If you have allergies to foods, latex, chemicals (etc.), sensitivities to fragrances, or asthma, your campus may have accommodations in place to assist you in mitigating these things. If they don’t, suggest that they start: signage can be placed on doors of classrooms students with allergies or sensitivities attend to inform people not to wear/use scented products in these areas; the same can be done for severe allergies to food or latex. My campus also had a bank of lockers that were peanut free; our accessibility resource centre also aimed to be an allergen (nut, fish and scent) free space.

Alternate Format Tests

Refer to the next point to see why the S is underlined!
While it may be obvious that a student with a visual impairment will most likely not be doing a standard written test, it may be less obvious that there are a variety of formats they can use to complete the same test as their peers—including large print, computerized versions [text-to-speech technology and typed responses], orally through use of a scribe… etc.
Students who have trouble writing by hand due to learning disabilities or neurological/neuromuscular disorders may also use a scribe, type responses, or use speech-to-text software (ie. Dragon) to communicate their knowledge. For students with other learning disabilities, swapping long-answer responses for short answer questions or multiple choice might help to organize information better and help to communicate knowledge more effectively.

This is just a small sampling of test formats that may be available—which is why it’s important to talk with the people on your campus to see what they can offer you. 

Alternate Format Texts

Far beyond the typical audiobook, alternate format texts can be both used to provide a different format for students with specific learning or perceptual needs, they can also be provided for students who struggle with turning pages, or cannot carry heavy textbooks. Alternate format texts can be digital, audio, or Braille; eText provides the advantage (in my opinion) of being portable using a tablet, and being searchable. As a student with a learning disability affecting my visual memory, it was recommended that I use audio books—I found that these books were too difficult to navigate—if I spaced out, I had a hard time finding where I’d been previously. Using the iPad, I set it up to highlight sentences as reading was occurring so I could find my place and easily scroll back if needed. With that said, some people might find audiobooks more friendly to their own disability: which is why options are important, and experimenting should be valued.
In Manitoba, Alternate Format Texts are handled by Manitoba Education—if resources were already produced for students with disabilities, on occasion I had access to them without purchasing the physical book; other times I needed to have a receipt for the book, or provide the book myself to have the eText created (students who wish to have audiobooks in Manitoba that are not already produced need to provide two copies of the book for production), so it’s important to find out your school’s needs early on in the term so that production can begin—your late request is not their problem.

In general, some provinces/states and a variety of programs may cover textbook costs for students with disabilities. It’s worth researching.

Assistive/Adaptive Technology

Computer access is commonly available for students with disabilities who need access to adaptive technology through the university’s accessibility services centre. These computers can offer print magnification, speech-to-text and text-to-speech programs (such as Kurzweil). An assistive technology specialist may be available on campus to help you explore which options may be relevant to your needs.

Extended Time (Tests)

Some students may need extended time on tests for a variety of reasons, including learning disabilities, ADHD, slow processing speed, or physical disabilities that affect writing speed. Extended time may be also provided based on circumstance (ie. people with diabetes receiving additional time to compensate in the event of a high or low blood sugar, or students with disabilities who need test time paused and restarted to take breaks to stretch/move or use the bathroom to ensure they are receiving a fair amount of writing time.

I had flexibility in adjusting my time accommodations—I started off with 125% (ie. received an hour and fifteen minutes for every hour my class had), but eventually adjusted to 150 to 175% for some classes, and 200% for others—it took some trial and error, but I was fortunately supported through this.

Interpreters

Students who are D/deaf and communicate through signed languages will require interpreters during lectures and tests to ensure prompts are communicated. (For the rest of us, remember to look at the person you are speaking to, NOT their interpreter!)

Lecture Recording

Using a tape-recorder or laptop to record lectures allows students with learning disabilities to return to lecture materials at their own pace. [I used Evernote to take notes and record at the same time. When I missed points, I glanced up and jotted the record-time into my notes to fill in later.]

Missed Lecture/Test Support

See note-taking next. If you have a chronic disease that may require you to miss class due to symptoms, medical appointments, etc., access to supports from the instructor/professor, as well as notes, can be crucial to being successful. Make arrangements BEFORE you need them! In the event of an unexpected circumstance  communicate with your instructors as soon as possible so they can help you catch up—being up-front, even without divulging too much information, helped me a lot when I got sick unexpectedly during two different terms. Meet with the instructor as soon as you are able so they can help you get back on track: most of them teach because they want you to learnlet them give you a chance. They can’t give you what you don’t ask for. Having a plan can also help you reschedule tests, extend deadlines, and help with group work—thanks to Rachel for these ones.

It’s also helpful to make friends in classes to share notes, study with, and, you know, have the occasional post-class eye-roll with.

Note-Taking

Many campuses enlist volunteer note takers for students who need note-taking support. This can be fantastic at best and horrendously unreliable at worst (or sometimes nobody volunteers—been there). Make sure you have a back-up plan, and if at all possible, try to take your own notes and use the volunteer’s notes to supplement. 

Priority Registration 

To increase the ability that students can attend class, students with some disabilities can register early for courses to avoid landing in sections that don’t jive with their symptom patterns or needs for accessible transportation. [Thanks to Teigan for reminding me of this one!]

Separate/Private Space for Assessment

Alongside alternate format tests, students who need it due to test anxiety, learning and attention issues, or medical needs, should be provided the opportunity to use alternate space for tests. Sometimes this means having students with similar testing needs writing in a room together, but among a smaller group (ie. 3-5 students who need a less distracting environment and also have an hour and a half to write a test); others it means having a completely separate space (with access to assistive technology if needed) to write in. I did much better with private space. This can also be implemented for certain in-class assessments [ie. lab quizzes] with adequate planning.

Seating accommodations can also be covered for tests (see next); additionally, my friend Riki has just shared that she now has a test accommodation to have dimmer lighting in her testing space (to quote: “because I like never really even thought that could be a thing but it is! And it’s fantastic.”)

Seating Accommodations

Students who need to should be able to pre-select seating for lectures. This can be for a variety of reasons, including vision, hearing and attention needs, but also for other reasons. When I was selecting seating, I would choose a front row seat, but by the door if possible so that if I was fidgety, I could slip out easily without disturbing half the room. Someone I know experiences anxiety when people are behind her, so she prefers to sit at the back. Students using wheelchairs will need a desk with removable seating; students with chronic pain may require different sorts of chairs to comfortably participate in class. Seeing the classroom and having a seat picked out and marked as reserved ahead of time can alleviate a lot of stress—plus it can be a great deal of fun when someone sits down at your assigned seat and is kind of being all “I wish I had assigned seating,” [maybe he had a need, maybe not…] it is kind of satisfying to be able to walk up and be all “Hi, I’m sorry, I need you to move” after someone is acting all cocky…

Study Space 

At least before I made a bunch of friends, I found the Accessibility Resource Centre a great place to study (then all my new friends distracted me, but oh well). They also offered testing rooms as study spaces if they weren’t booked—ask around, especially if you’re on a crowded campus like I was. This may be less of a problem for people who live on campus (or in the US where campuses are often gigantic), but for commuters on small campuses like mine, study space is at a premium.

Tutoring/Mentoring

Whether directly through their university or through grants, some students have received funding to receive tutoring. At the local community college, someone I know says he has tutor coverage up to a certain number of hours per term, and then he has to pay. Investigate the options. If you’re new to post-secondary, I would also ask around with the student support people if you are thinking a mentor might be helpful to you—other students with disabilities themselves are a great wealth of knowledge—and fun. 

Peer Support!

While not a formal accommodation, if your campus has an accessibility centre… USE IT! My campus had a few tables in a room and a computer bank for students with disabilities to use—I also met a ton of friends here, and had some of the best times I had at university in this room (…Shotput on the floor, much? Bringing cupcakes back from a cupcake run for the Accessibility Services staff, puppy playtime when my friend Gerry would let his service dog, Marcus, off his harness, seeing a business prof do a headstand—all of that and more. Sometimes disability perks happen, y’all!)

So yes, there are some unexpected bonuses—at least in my experience… but that could be because I am slightly a troublemaker? In a good way.

Make it happen.

Remember Riki up there—even if you don’t think it could be an accommodation thing, it possibly/most likely IS A THING. Don’t let intimidation or nervousness stop you—you can always quit accommodations if you really hate it (I don’t know why you would, but hey), but you’ll never know if you don’t TRY.

Have stories to share about being a student with a disability? Have tips to share that I’ve missed? [There are probably seventeen thousand.] Share ‘em below [or shoot me an e-mail if you want to guest post or just connect off the record!]

be still: beginning 2015

Among one of my last pictures of 2014…

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Misty, my friends’ dog, seems to think I am part of the family and thus, furniture.

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Welcome to 2015. Let’s go outside in -15 without jackets, guys.

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“Well, if I’m gonna jump, then I’ll jump, and I won’t look down…”
—sticking with you, addison road.

…and the Instagram version:
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Jaaaaackpot!

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Focus.

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Sam scored some hockey tickets–and I got to be his guest! Also his version of the selfie is better than mine.

(That’s an excellent way to get into day 3 of 2015, eh?)

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Oh, sorry (not sorry) Leafs…

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I may not be into resolutions, but I figure a reading challenge is a fun idea.

(Like blogging more often and forgetting to hit publish).

Poutine with my cousin Dean as he is back from Minnesota for a bit.
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And, a fun package from my friend Dia as a surprise in the mail:

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[Vanilla creme Peeps are delicious.]

slingshot saturday: ten links from around the web.

In one way or another, I’ll be using Saturdays to look back—whether it’s on goals I’ve made and progress towards them, recapturing the past month, on music that I’ve been digging, anything goes.
 
Today’s Slingshot Saturday will take us back to some links from the past week. [It was the week we all started having to write 2015 on stuff, so good links were both easy AND difficult to find].
  • The Massive Fitness Trend That’s Not Actually Healthy At All. Thanks to the real-talk of Greatist for this gem on “the militarization of fitness” and why it’s not a good thing. (That’s right… Let’s ALL embrace not puking at the gym… Lactic acid craziness does not go hand in hand with a good workout, resolutionists.)
  • Real-world doctors fact check Dr. Oz, and the results aren’t pretty. Yes, those of us immersed into this scene could have told you this years ago about the fairytale land Oz is living in (and The Doctors)—I just hope this information is adequately getting to the general public.
    You know how you’re not supposed to believe everything you read on the internet? That goes for TV, too—even more-so, maybe.
     
  • About that mom who’s not bragging about her kid. As a young adult with learning and attention issues, parts of this article definitely resonated with me: while I struggle sometimes with not being as proficient with a variety of things as I’d like—both now and in the past—this article really hit home for me about maybe what my mom was thinking in certain conversations with people at times, especially when I was in university. That’s right, if anything, this can intensify after high-school graduation.
     
  • A Step Forward. A blog post by my friend Mike at My Diabetic Heart that is definitely worth reading if you have or care for someone with chronic disease: it’s hard to be perfect, and sometimes it’s the outward-seeming smallest steps that can get us back to focusing on better.
  • Jeremy Kyle: Who Stole my iPhone. Much like Maury Povich is to America, Jeremy Kyle is really just a far more amusing [to me] version, except from England. My friend Simi and I watch Jeremy Kyle via YouTube late-ish at night (for me) and early in the morning (for her in England, thus her knowledge on Jeremy Kyle). Related: “Which of my children stole my bingo winnings?”

Enjoy the rest of the weekend!