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. 

[catching up] ADHD fact friday 4 [28/31]

adhd fact friday

Week Four Fact

Sensory Processing Disorder and ADHD often coexist, but sensory issues are in themselves common for people with ADHD.

I always just presumed I was right when I said I was secretly seven or twelve or whatever in relation to my reluctance to eat tons of foods for whatever reason—often texture. In fact, it can be an ADHD thing. While I worked in daycare for years with no issue, I’ve always had issues with places like bars or restaurant lounges with loud music and people trying to talk over it at the same time, combinations of dim and neon lighting. I can do concerts, but I think that’s because there’s no other place my attention is shifting between—I’m not trying to converse or anything. Face paint? Nope, nope, nope (and I don’t wear make-up and I wonder if it’s also related? Or also that I cannot be bothered). I’m fortunate that my life uniform can be hoodies, t-shirts, jeans and shorts. And runners—sandals aren’t even a thing I own, save for a few pairs of flip flops I attempt to tolerate going from hotel rooms to hotel pools (sand at beaches? Ick.). Foods? Yep, I’m secretly seven. Salsa, oatmeal and certain pasta sauces even fall into the category of things that I can’t tolerate texture wise. The smells of other foods will do it, or the taste—anything vinegar-y falls into both of these categories. I could list all the foods I can think of that I dislike but we’d be here awhile ;). (I just bought noise cancelling earphones which should actually help with some of the sound sensitivity issues.)

I haven’t been diagnosed with Sensory Processing Disorder, but I wouldn’t be surprised. However, at this point in my life I’m not sure knowing would solve a whole lot. The link to ADHD has been made pretty clear, and that’s good enough for me. Learn more here. 

Oh, and I should add that the weighted blanket thing has been great for me. Although my current rice-ziplocs-and-tape blanket has sprung a leak so I haven’t been able to use it for lack of remembering to fix it during the day. Put it on the to-do list!

[catching up] tips + hacks thursday: bullet journal

Last Winter, Nikki and a lot of the other Smart Girls with ADHD were discussing Bullet Journaling as a planning method. So by March I finally caved and tried it.

I’ve stuck with it, which is a shock for my Google Calendar-ized self who has previously been rather planner-phobic due to mostly forgetting them at home and whatnot. Hello, I couldn’t maintain control of a pencil actually being present in my backpack throughout school, how could I be expected to have not only a thing to write with but also a corresponding notebook? I still forget it sometimes, but, it’s with me when it needs to be more often than not. Being a freelancer now, I’m pretty sure the Bullet Journal system is my number one tool for being organized. (Thanks Nikki and the Smart Girls for finally making me curious enough to try. Because I NEVER thought it would work, never mind that I’d keep it up for eight months.)

What’s a bullet journal?

 

Mine’s a half grid-half lined journal that cost $8 at Staples. There’s an official Bullet Journal but look, I can’t even keep up the index on my non-official one and you know what? That’s the joy. IT DOES NOT MATTER. There are no pre-set thingies to make me feel guilty when I don’t fill them out. Here’s an awkward picture so you can see my washi tape tabs.

http://i2.wp.com/farm6.staticflickr.com/5786/30514730252_3ce9195b89.jpg?resize=249%2C500&ssl=1

The bullet method is what actually matters (which there are a thousand variations for and that are super customizable so hey, no rules!)

Here are some snaps I took of my Bullet Journal on Wednesday.

http://i0.wp.com/farm6.staticflickr.com/5496/30595209666_b17ebdd117.jpg?resize=375%2C500&ssl=1

My system is circles for events, fill them in when they’re done, and boxes for to-do items: half filled when they are started, totally filled when they are done. It’s month end so all the invoices are due and such.

http://i1.wp.com/farm6.staticflickr.com/5613/30514774232_5c7744d7f2.jpg?resize=375%2C500&ssl=1

Here’s all the shit I have to do that is slightly more checked off now but not actually as much as it should be probably. I guess it’s only Friday as I write this…

http://i0.wp.com/farm6.staticflickr.com/5698/29997765743_01c9afc83b.jpg?resize=375%2C500&ssl=1

Zooming out, this is half of my monthly view and my work stuff that I had to get done and whatnot. I made a goals section that I realized didn’t really work because you can’t jut fill in a checkbox for a goal. Which is nice because the Bullet Journal system is all live-and-learn-y. The other page has the numbered days of the month down the left side, and then what I have to do on them but there’s not a whole lot on there because I tend to just put it into the weekly view when I need it there. Which is kind of not the point but whatever.

Clearly, it works well for me because I’ve actually been using it since March. Which is pretty cool considering I’ve never stuck with anything paper that long. I like that there’s no special notebook needed—although my interest in the Passion Planner has been piqued…

Challenge Update – Day 28

Plank
175 seconds people. That is 2:55 which is almost three minutes. Nonsense.

Meditation
Bitesize Self-Compassion on Smiling Mind. Which is maybe one of my new favourites, we will see. Also I really have to try to not just do the bitesize ones but I am not made for getting up at normal times and I’ve been super sleepy. Yes, the morning meditation thing would help.

mostly about nothing, but it’s something. [20/31]

First off, for some reason the 135 second plank, the day after the flu shot, the day I played wheelchair basketball and tennis and used my arms more than ever was infinitely easier than the 145 second one I did tonight. 

I’m not sure what the deal is with that. Maybe just because it’s day 20? Or maybe the flu shot made me secretly awesome yesterday and today I am just back to normal. My arms are sore as well, my left non-flu-shot and non-tennis-raquet-ing arm more-so than my right, which I am not sure I understand. Seriously, this is the most hardcore DOMS I’ve had in awhile. (I mean, probably a good thing because that sort of means I am doing something.) Can’t stop, won’t stop. 😉

Unlike Google Word Trends and ranting, as I’ve done on the other two Thursdays this month, I don’t have a lot to say. It’s 12:26 am and I should go to bed. I’m doing a presentation with Gerry tomorrow at the Mantioba Teachers’ Society Physical Education Professional Development Day (or #MTSPhysEdDay because duh MTSPEPDD is clearly too much of a mouthful). Our session is called Play With Your Eyes Closed and it’s going to be super fun.

I may have under planned because I thought we had 2 hours and not 2.5, but we can just throw stuff around longer. Or let people go home early. I’m pretty sure nobody will refuse to go home early on a Friday, right?

Challenge Update: Day 20

Plank: 145 seconds, AKA 2:25. Ten(/eleven) days of planking to go. (And then to maintain it. Or keep improving on the planking. I’m not sure I need to plank for more than like 3 minutes though?)

Meditation: Bite Size Exploring Sounds meditation. Because at 1 AM I seem to be unable to do anything more than 5 minutes. Or 3 minutes. And I need to work on my morning meditation routine. Baby steps, right?

wordless[ish] wednesday [19/31]

http://i0.wp.com/farm6.staticflickr.com/5591/29809843833_e131bf814a.jpg?resize=375%2C500&ssl=1

Plank: 135 seconds (2:15). And that was with my flu shot arm AND after playing wheelchair basketball and wheelchair tennis today (with medical residents. Because unexpected and awesome things happen in my life and I like it. Except I am not good at sports.) Then I ended up with many cell phones to take pictures. This has nothing to do with planking now.

Meditation: Forewent a guided meditation last night for trying to meditate on my own. I’m still not sure I can do it without a track because I like, fall asleep.