patient inclusion: how long overdue?

I’ve been on this huge audiobook kick the last week. As in, since December 12, I have read 8 books. (This is what happens when I finish my work early/do not have enough work to do. Honestly, this is fun but I’d rather be writing.) Maybe I’m just trying to hit my 40 book goal for 2016—I am at 26. The answer seems like yeah, right.

Through the Centre for Equitable Library Access program (CELA), Canadians with print disabilities can access a variety of audio or braille books on loan, for free. Most of these books are recorded by the CNIB (Canadian National Institute for the Blind), and as such, Canadian authors are well-featured, and I’ve actually been able to find a book on goalball in the collection. Following Margaret Trudeau’s Changing My Mind, I read Invisible: My Journey Through Vision and Hearing Loss by Ruth Silver.

On attending a conference about promoting independence for those who are both hard of hearing and visually impaired (Deafblind or deaf-blind), she writes:

There was only one speaker who was deaf-blind.
—Ruth Silver in Invisible: My Journey Through Vision and Hearing Loss 

Immediately, I rewound. I listened again, and shook my head.
Typical.

I do not know for certain what year Ruth Silver attended this event in question, of which she wrote “There was only one speaker who was deaf-blind,” prior to starting the Centre for Deaf-Blind Persons in Milwaukee in 1983. She published the memoir in 2012. In any event, that is twenty nine years prior to the book’s publication, and thirty three years ago as of 2016.

I do know that not much has changed.

In mid-November, I had the opportunity to attend an event in Toronto, one that had patients in the title no less. While matters were not “solved”, in response to Twitter-vocalization regarding true patient inclusion by Bill and I, the organizer reached out to us via e-mail following the event to “address” our concerns. The crux of the matter is, even an event that was meant for patients, did not feature a single patient speaking on the matter at hand. While you can scroll back in my Twitter feed or contact me directly to learn more, I’m not going to give nods to the event itself. One, because as much as this event frustrated me, I want to believe they had good intentions even if they were way off the mark, and two, because I believe that these nonprofits are likely doing their patient communities good: it is not up to me to speak on the actual work of these groups. (Disclosure: They paid my travel and expenses, they being pharma, I presume).

So here it is again. There was not one single patient on the agenda. I don’t want to hear any of that bogus “we are all patients” crud (nor that taxpayer BS)—yes at some time we are all patients. However, there are those of us who are chronic patients, reliant on medicine to stay healthy and/or alive.

How sad is it that as this uprising, somewhat-bright, restless collective of humans craving better, how is it we have not gotten this straight in thirty three years?

I wish I knew. Documents like the excellent Patients Included Charter for Conferences get us closer. But they need to be implemented, advocated for in themselves. And we need Canadian patients to be in on, in for this movement, too.

It’s been 33 years. And we’re only starting to figure this out. The uprising is bottom-up, not top-down. I mean, or the reverse, depending on how you view who is in power.

so must we demonstrate
that we can get it straight?
we painted a picture
now we’re drowning in the paint
let’s figure out what the fuck it’s about
before the picture we painted
chews us up and spits us out 

sick of painting in black and white
my pen is dry, now i’m uptight
so sick of limiting myself to fit your definition.

redefine.

—redefine, incubus

We are well overdue to break the typical.
Probably, well overdue by well over 33 years. 

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!]

book review: a different kind of cheerleader

There are a few things I have opinions on—a lot of the time I just shut up, but sometimes I get argumentative, and sometimes I get argumentative about my opinions with people on Twitter. We are usually quite civil about it, but this is the first time I ended up reviewing a book out of the scenario. I connected with author Lira Brannon last week—connected is a nice term, in retrospect, I did interrogate her a bit about the “inspirational” nature of her book A Different Kind of Cheerleader, and the type of “inspirational”-ism that was implied, as the book is both centred around disability and Christianity. As I said on Twitter, “Disability isn’t inspiration: it’s life”. Lira, however, dealt with my interrogation well, and when I asked if I could receive an electronic copy of the book for free in exchange for a review on my blog, she agreed and quickly hooked me up with a Kindle download code.

Trigger warning: The later aspects of this review mention self-harm and suicide.

Three-sentence summary: 
The main character, Tansy, is a thirteen-year-old with a spinal cord injury [SCI] from a skateboarding accident in her childhood. Now a paraplegic, Tansy has all but abandoned the dream she and her best friend share of successfully qualifying for their junior-high cheerleading squad. As she starts junior high, she is introduced to a variety of new people who change her perceptions about what she believes she is capable of—and what she thinks about God, and who she was created to be, and to become.

Target age:
I’d throw this one in the 10 to 15 age-range—but, I personally enjoy teen fiction, so go with what works for you/the kid you’re trying to buy a book for.

Thoughts:
Overall, while the core aspects of the plot were fairly predictable, there were enough twists in the core of it to keep me interested and guessing—I started reading the book late Thursday evening, kept going until 1:30 AM, and finished it off the next morning [and people, my Concerta would have worn off at 11:30 or so—it was the book keeping me going].

While the core aspects of the book include Tansy’s desire to become a cheerleader independent of her disability, the author paints a very clear picture of the rest of Tansy’s life: starting at a new school and dealing with how her teachers respond to a student using a wheelchair (i.e. the typical ‘I can’t walk, but I can hear’); Tansy’s feelings towards her disability (anger, resentment, and eventually acceptance); responding to how her friends perceive her disability; relationships with her mother, brother, friends, physical therapist; and how her SCI and using a wheelchair pose additional contemplations within the already complicated life of an adolescent trying to figure out her place in the world.

Though I slated the book for younger ages, there are some themes including self-injury, attempted suicide, and suicidal ideation present in the book that may be more suitable for slightly older readers. The mentions of these aspects are brief, however, they were a source of confusion for me as I didn’t think there was enough detail preceding or explaining the circumstances in which Tansy’s acquaintance from rehab, Meg, was hospitalized following a suicide attempt (this may require a re-read on my part). While not comorbid, I appreciated that the author intentionally mentioned the mental health aspects associated with living with a disability and/or following a traumatic injury.

The storyline brings Tansy to interact with a variety of people who become a part of the bigger story unfolding—pressures from different people lead her different directions: some into finding the confidence to try out for cheer, others who cross her path in unexpected ways that help teach her about God—and through these conversations, more about the people around her. While some characters seemed slightly out-of-place [i.e. I don’t care if he’s the coach’s son, why the heck is the youth pastor hanging out in the middle school gym and at cheer tryouts all the time?], for the most part, the interaction of the themes surrounding Tansy’s daily life learning to more fully coexist with her disability, and the journey towards believing in God, was well structured.

I thought, despite all the #inspiration[al] tags, that overall the author did a decent job at not sensationalizing Tansy’s accomplishments, and allowing her to both succeed and screw up as much as a character without a disability would have, with a few exceptions of circumstances that wouldn’t have arisen if not for Tansy’s disability […which obviously is realistic]. In terms of the realism of integrating Tansy into the cheer team, I [being an adapted physical activity nerd] felt that Lira addressed the types of “wheelchair tricks” Tansy was able to learn well, but would have enjoyed reading more about how she became a true team member and not just a possible story of oh you’re in a wheelchair, we’ll let you on the team even though you blah blah blah through more concrete examples of how she used her chair as an asset and not an inspiration–such as how she would be integrated into team and more gymnastic-type and how existing routines were adapted. But, like I said, I’m a nerd that way.

Reading Guide:
A question guide is provided in the back of the book, which prompts the reader [or an educator or youth leader, etc.] to reflect on what they’ve read. The questions are evenly distributed between faith, friends, family, and Tansy’s disability. Though I never use reading guides on my own [because, what is this, school?], it’s definitely a nice bonus feature.

Recommendation:
A Different Kind of Cheerleader is geared towards older-school aged kids and younger-teens—an easily approachable read, with enough plot twists and serious/more mature themes to keep older readers engaged Cheerleader would be a great way to approach the topic of disability in a variety of settings. As both faith and disability are core-topics [and often very confusing], I’d recommend younger kids (under 12) be supported through reading this book, by a parent, mentor or educator, to best facilitate learning and enabling kids to ask questions and form a better understanding of their own thoughts on both core themes.

Final thoughts:
A Different Kind of Cheerleader is an approachable and engaging book for readers in their younger teens [and, if you’re me, early twenties], presenting a variety of opportunities for critical thought on faith and disability. With multiple quick unexpected turns in the plot, Cheerleader is easy to get lost in for a few hours, and would be a suitable way to begin a discussion on teens’ thoughts on what it means to live with a disability—and hopefully, one that can help realistically assist them in contemplating how to restructure their thoughts on a variety of different topics.

A Different Kind of Cheerleader can be found on Amazon. You can learn more about Lira on her website, and through connecting with her on Twitter and Facebook.

Disclosure: I received a free electronic copy of the book, A Different Kind of Cheerleader, from the author, Lira Brannon, which I offered to review prior to finalizing the agreement. I was under no obligation to provide a favourable review.