talk talk talk Blog Looking Snazzy and Modern

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Screenshot of political blog talk talk talktalk talk talk — my original blog — has been looking sad and dated for way too long. I put updating it in my endless ToDo list. Publishing Concussion Is Brain Injury: Treating the Neurons and Me moved it from being written in some task app into my head, needling me regularly until finally Christmas arrived with NO appointments, NO TTC to sap the living energy from me. I got it done. Took longer than expected. With brain injury, doesn’t it always? I used one of Blogger’s new themes, then customized it, sticking with a dark theme because I liked it, and it helps to differentiate my political blog from this one. And I fiddled around with one of my Toronto waterfront photos for my header image — even mulling over a quacking duck shot — until I decided I liked the sardonic look of the gulls. They’re just soooo Toronto and political looking.

Yes, folks, talk talk talk is looking pretty good now. The gulls are even impressed. Sort of. The only problem is that with losing so many years of regularly working on my websites to focus on my brain injury recovery, I lost my familiarity with HTML. I only ever copied and pasted code I needed that I found on the web, anyway, but trying to figure out how to change the full post page to a white background with black text defeated me. The HTML code looked like complete gibberish. Worse, I couldn’t find what helpful techies in their helpful posts said to find in order to add or replace code. I felt like my computer-understanding brain had turned into Swiss cheese. Blogger’s themes are more visually accessible than they used to be, so I’m going to have to rely on that . . . for now. It’s not that easy trying to make one’s blog or website accessible, but as I improve, I’m hoping to be able to do that here as well as over on talk talk talk.

The nice thing about refreshing a blog’s look is that it makes you want to blog again. It’s been sporadic on talk talk talk and barely weekly here because I had to make the hard decision five, uh, six (gulp) years ago to putting my energy once again towards treating my injured neurons and recovering brain function. I hadn’t truly heard the years ticking by until I logged into my CafePress site to update its widget on talk talk talk and saw my last login date: November 2011. That was a depressing stunner. I have some choices to make.

Brain Biofeedback

Proprioception Efficiency Improving after Eye Surgery

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I’m back on the weekly brain training track: enhance gamma (39-42 Hz) brainwaves for three neurofeedback screens; inhibit 16-20 Hz and enhance SMR (12-15 Hz) brainwaves for the next three neurofeedback screens. The latter three are supposed to help me adapt to and keep my improved and more efficient vision, perception, and proprioception.

Right after this week’s training, I got a taste of the latter.

I normally go down most TTC steps slowly and carefully. It’s easier and quicker to walk down their stairs when my eyes are on the steps in front of me instead of looking ahead. But with that method, I only see the steps. I don’t see people coming at me or signage or anything else. So I make myself look ahead. Gotta see what’s around you! The problem is the last few steps. For whatever reason, they give my feet the willies. I slow down and stop on them, look down, then continue to the landing. The step I stop on has been improving from two or three steps before the landing or the second step before to the last step before. This week (for the first time?) I felt distinctly the difference between the texture of the step and the texture and flatness of the landing. Yeah, I’m wearing shoes, but I could feel a difference in the hardness and how the landing had a bit of a dip from where many feet had worn down the terrazzo. Being able to feel the difference made it easier to know where I was and give my feet confidence to keep stepping down until I touched down on the landing. I didn’t have to look down to check (though I did from habit, except the last time — sweet). Since this is all at the conscious level and not yet automated, I do it slowly, slowly. As my brain learns and stops trying to return my vision back to what it was used to (so annoying), it’ll become automated gradually and I’ll be able to speed up and do it automatically like I used to before my eye surgery.

The TTC uses an enormous variety of tiles for its steps. Most of them have low contrast. My fave is when they replace a light tile with a dark grey one — makes it grab my eyes, scream look at me, look at me, as if walking down and up TTC steps wasn’t hard enough. Just another wonderful example of the TTC’s systemic discrimination against those with visual or cognitive impairments. I guess we’re not supposed to use public transit.

Anyway, getting a taste of my increasingly efficient proprioception was way cool.

Brain Power

A Whale of a Post

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Majestic Heart

I wanted to see the Blue Whale heart at the ROM (Royal Ontario Museum), but I hadn’t been there in years, never mind in the year since my eye surgery. Navigating large indoor spaces with my new vision still makes my head spin. Yet I asked my CNIB orientation mobility trainer if he could take me for our next training session. No problem. I like his laid-back, don’t-worry, what-you-need-I’ll-help-you-with style. Makes one feel safe. And when the world unexpectedly dizzies you and leadens your brain as if lead weights have attached to every neuron, it makes one feel things will be OK.

So I had no extra worries as I stepped into the Crystal. Sure, the outside with all its spectacular angles spun my head and slowed me down, but I expected that.

Blue Day

I paused in the small area between entrance doors. And then we entered. My trainer had explained that the tricky thing about the Crystal is that there are no 90-degree angles. OK, I thought, not sure why that’ll affect me, but nice to know. It’s one of the reasons I like the Crystal over the previous forbidding, boring ROM addition.

I stepped further into the large area where you drop off your cloak, pay your ticket, and pass through the gates at the top of the rather long slope. No slope, my trainer said. The floor is flat, he stated. Uh, no, I’m walking uphill, and it’s really throwing me off. I stuck close to the wall of angles and asked again about this uphill. The floor is flat, he repeated patiently then lead me into a room off the entrance.

Oh. My. God. I’m back in that freaky room at the Ontario Science Centre! The floor is really sloping, and I’m going to fall! Don’t fall, he instructed firmly but patiently, adding that the floor was flat. I absolutely didn’t want to walk further into this room of angles, of white walls and black floor. But my trainer was pointing out two chairs across the room from where I was standing frozen. Um, all I saw were two metal tetrahedrons or some geometric form with no seat, no back. Come closer, he persuaded. Some days, I’d rather stay home and not do training. Whose idea was it anyway to see the Blue Whale?! Oh yeah, mine.

I inched my foot forward, carefully feeling the sloping floor so I wouldn’t wobble and fall. He reminded me the floor was flat.

I struggled to believe him. My new, so-clear vision pretty persistently told me we were standing at the bottom of an angled uphill.

I was also perturbed that my new 3D depth perception couldn’t perceive the seat or back of these chairs he was warning me about. One careful step after another after a pause after reassurance the floor was flat after careful inching feeling-the-floor step, we made it to the chairs. Halfway there, my brain perceived the seat and then the sloping back, but I wasn’t about to sit down. He sat down. Yeah, OK, I get it. I sat. He warned me the back slopes more than I perceived and to lean back carefully. I never felt the back because I lost my nerve as I leaned and leaned and leaned and felt no metal touch my back. I stood up. I followed him out the room, walking uphill the entire time.

It really was the most disturbing and weird thing. He explained the lack of 90-degree angles was why I saw the flat floor as being on an angle. I thought about how I had no trouble perceiving this area when I’d come years ago and how I would need exposure to this a few times to be able to see the floor as flat again. Who would come with me to do that?

Mercifully the exhibit area had nice straight walls and a flat floor. The wall-size videos were discombobulating to the extreme, but I could turn my back on them. And the lighting was the usual, expected challenge.

Blue Head

We turned the corner, and there it was: the skeleton. Enormous. Imposing. Majestic.

Yikes! How Far Away is the Tail?

The remains of a mysterious mammal I’ve been a fan of since a kid. In the battle between perceptual difficulty and taking photos, my photography instinct won, as it always did. It’s gotten me into some precarious situations for decades. As I strained to capture the whale’s puny vestigial leg bones that look like jet planes, I almost fell backward. Sheesh, Shireen, don’t fall! Your trainer is near but he doesn’t need to be freaked out.

No not bone jets but Blue Whale legs

He had to leave and asked if I’d be OK. Uhhhh… I hadn’t seen the heart yet. But I wasn’t sure about that sloping floor. He repeated instructions several times. We scheduled our next session. He reminded me to stick near the wall and rest. It was kind of lonely, but then I saw the heart.

Big Blue Heart

Another thing I learnt in the ROM is my reading is improving. I read the labels and absorbed them! The words didn’t bounce off my brain. Yeah, I knew much of what I’d read from way back; still there was an awful lot of new information to absorb and process. The cognitive effort began to take a toll. I considered just not reading anymore and leaving. But I didn’t want to waste this opportunity. I wasn’t about to let my brain injury and eye surgery changes shortchange me AGAIN. So I obeyed my trainer and rested for a bit. Then I continued.

By the time I was walking along the other side of the whale, I’d had enough. Thankfully a couple of couples were taking selfies next to Blue’s ribs. Great excuse to stand and not move. Also to let my brain map the video wall and now see the skeleton in light of what I’d just learned.

I conked out early that night. But what a day! So glad I went!!


Join Us to Protest for TTC Accessibility for All

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Accessibility of all kinds is pitiful on Toronto’s TTC.

Wednesday, August 31, 2016 at 4:00pm
Please join us at Yonge and Bloor
To protest this blatant injustice towards our most vulnerable citizens.

When you protest the TTC’s abysmal treatment of the disabled, we all win!

D!ONNE Renée is the organizer behind this event. If you have any questions, want to throw your virtual support behind her, or have comments, reach out to her via email or on Twitter at @OnElectionDay.


The announcement reads:

Accessibility is a Right — Not an Option

On Wednesday, August 31, 2016 – Between 4pm – 8pm, on behalf of community and Public interests, an #AccessibilityNow! TTC campaign/protest will take place starting in the Yonge and Bloor area to raise issues concerning discrimination based on disability, barriers, and ableism in transit and its services.

The Accessibility for Ontarians with Disabilities Act sets out the interpretation for “barriers.” Too many barriers exist within the TTC. It is not acceptable to take a “minimum/at least” approach in improving access for all. The standard should be a model that reflects an equal to or greater than the access that is currently available, model. The equal to or greater than the access that is currently available model is a model of equity and equality.

People have a right to access public systems; in this right, people should feel that they have the option to be free to choose whether they access those systems or not. We are all not free just to be.

Approximately 35 out of 65 subway stations are “partially accessible,” on good days. Functioning equipment = good days. “Partially accessible” means that all patrons don’t have the option to access the system for lack of elevators, Braille information and helps, proper signage (large print, clear, large-enough digital boards), functional escalators, inaccessible entrances/exits (now including Presto Card gates and readers) to subway stations, buses, streetcars, and extraordinary Wheel Trans wait/scheduling. Plus the TTC worsened accessibility when they began replacing the names of Toronto’s subway lines with confusing numbers.

TTC (and transit across Ontario and Canada) must be proactive in its operations and provide equality in its services and not discriminate against anyone, including people with disabilities and/or people requiring accessible access in order to use its systems. TTC was able to find money to implement Presto Card systems into its subway, bus, and streetcar services even though the gate systems being used at subway and bus stations are all not accessible; but TTC seems to be unable to be actively proactive in ensuring that all areas of TTC are fully accessible.

While this event will take place in downtown Toronto, the issues and concerns being raised affect all of Ontario and Canada. We want everyone to have the ability to travel independently, or in group, as we so choose.

We want a barrier-free Canada.

Will you help?

Will you join the protest and invite others to do so too? Will you gather with community in accessibility advocacy? #AccessibilityNow #GetItRight #AODA #AODAFail

Brain Power

Partnering Up to Attend TTC Public Forum on Accessible Transit in Toronto

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Kerry, a Board member of BIST (Brain Injury Society of Toronto), and I attended the TTC Public Forum on Accessible Transit back on 16 September 2015. I had spoken to one of the BIST Board members a few months previously about TTC accessibility, and he’d suggested I attend accessibility meetings. I told him this was one area I couldn’t do alone. I have to do most things by myself; I’m overloaded. I can’t do one more thing on my own. The Board took that to heart, and Kerry invited me to attend the Forum with her and drove me there. What a difference it makes to have someone with you! Not being alone buoys you up, gives you the ability to spend precious energy on the activity not as much on getting there and back, means you have someone to hash over a shared experience, helps you think, and empowers you to participate in society in person, not just virtually. This is what a person with brain injury needs. Heck, anyone needs!

I had never attended one of these Forums before – Kerry had a long time ago – and it was instructive. I wrote extensively, with pretty pictures, on my political blog about what I saw and learnt, about the conversations I had with TTC staff about the cognitive inaccessibility of subway line names, signage, streetcar stop request buttons, and the TTC’s pilot of new streetcar shelter maps. Here are the key points:

  • TTC staff were there, talking to attendees with visual, cognitive, and physical accessibility problems on the TTC. And the top management were there listening to complaints and noting down questions. (The TTC will post their answers in the first quarter of 2016.) But the TTC Commissioners with the exception of TTC Chair Josh Colle and Councillor Shelley Carroll, were absent. And yes, the Forum is legally mandated, but the staff showed up, while, politicians — who represent the people — did not with the rare exception.
  • Despite Mayor John Tory’s avowed interest in accessibility, he and members of Toronto Council were largely absent from the forum on the biggest accessibility issue the city faces.
  • Politicians pay lip service to physical accessibility; are unaware of cognitive accessibility; don’t care to hear directly from the public.
  • The changing of subway line names to context-less, abstract numbers was a design decision and didn’t take into account how people remember and navigate their environment. The TTC needed a unifier and thought numbers was it. Um, no.
  • The TTC has a problem of replication of names, for example, St. Clair station and St. Clair West station. Once the Crosstown opens up and if they named it the Eglinton line, there would be Eglinton station, Eglinton West station, and the Eglinton line. There’s a singular lack of imagination in naming stations and lines to retain context but make them distinguishable without resorting to incomprehensible numbers.
  • The TTC believes white text on black is the easiest to see. It is in certain kinds of design but not for maps, especially when they’re small and above your head.
  • London Underground TTC Platform Signs Collage SOOC Shireen Jeejeebhoy 26-09-2015
  • The design team at the TTC aren’t fully aware of all the research on memory, navigation, the distinguishability of colours depending on use, and so on.
  • This might explain why signage seems to be a constant work in progress over the decades and why it’s not visually and cognitively accessible, with certain rare exceptions.
  • Sign Through Yonge Subway Window
  • The TTC is trying to make shelter maps more useful and haven’t received much feedback from the public on their pilot program. Apparently, they usually do.
  • There’s a new international standard for Exit signs that the TTC is implementing. I saw these green, running-man signs on the London Underground. There was a big difference between the ones on the Underground and the one I saw at Bloor station: size. Size matters when you’re panicking and running from a crisis. The bigger the sign and the closer to eye level it is, the easier it is to see. The TTC seems to think in its design decisions that they have less room than they actually do. Yes, stations built in the 1950s are small, but so are Underground stations built decades earlier, yet the Underground makes its maps full wall-height size and its running-man Exit signs very big and places them at eye level.
  • London Underground TTC Exit Signs Collage SOOC Shireen Jeejeebhoy 26-09-2015
  • The streetcar stop request buttons were placed according to a math equation not on practical use. I don’t think new vehicle designs are tested by real-world people with cognitive, visual, auditory, and other physical challenges.
  • TTC New Streetcar Stop Request Button Locations Shireen Jeejeebhoy 5-10-2015
  • The button on the doors of the new streetcars serve as stop request buttons in between stops. Who knew! Not the person standing in front of the door who walked across the aisle to press the stop request button and then returned to her spot in front of the doors. Who can blame her for not knowing – there’s no sign telling you.
  • The TTC wants to be a beacon for transit systems around the world. Uh, the TTC needs to get basic accessibility down first. “Beacon” is a long, long, looonnnnggg way off.

Update (27/10/2015):

If you want to add your voice and help make the TTC accessible to everyone, here are some contacts and ideas:

CBC radio (and I think Toronto news too) don’t use subway line numbers but their names, maybe because I brought it up with them as an accessibility issue. Metro Morning said accessibility is important to them when I tweeted them about this. If you hear your favourite radio or TV news show using subway line numbers, tweet them (easiest), email, or call them to object and tell them it’s an accessibility issue and they should use the proper subway line names. Tell them they make it cognitively challenging and worsen the accessibility of the TTC when they use subway line numbers instead of names.

Here’s the contact details for the TTC people I tweet the most (their email addresses are on their Twitter profiles):

Ian Dickson, Manager, Design and Wayfinding: https://twitter.com/ttcdesign

Brad Ross, Head of Communications: https://twitter.com/bradttc

Below are the Twitter feeds for TTC Help. When they use line numbers and I see it, I RT their tweets with the line names and the hashtag #accessibility or I will ask them to use the line names. I noticed during the election that David Lepofsky is the king of repetition, and he gets results.

For help with questions and concerns 7am-10pm 7 days/week: https://twitter.com/TTChelps

For service updates (which I at times RT with the line names and #accessibility added): https://twitter.com/TTCnotices

Follow David Lepofsky at https://twitter.com/DavidLepofsky for accessibility info.


The TTC in Time and Space

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My newest novel Time and Space has just launched. When I wrote it in November 2011, I thought I have to get this out fast, otherwise my prediction about the TTC will become obsolete, after all Mayor Rob Ford was voted in a year earlier to build subways. His popularity and speed at beginning to implement what he’d promised was such, I thought for sure that some of those LRT lines would turn into subways. And then when Andy Byford was promoted to CEO and began polishing up the TTC, I became convinced a major rewrite was in my future.

So much for my prediction about my novel’s obsolescence.

Here we are, a year and a half after National Novel Writing Month 2011, when I dreamt up and described the 2411 version of the TTC — which description arose out of my total frustration with the lack of needed subway expansion –  and nothing has changed. This is good for my novel, for it won’t sound outdated. But not so hot for us commuters. While I tried to get my novel published the traditional way and while it also had to wait in line as I worked to get other books out first, Toronto Council indulged in endless back-and-forth debates and TTC coup and counter-coups. It made for compelling viewing for us Torontonians, and I’m sure reporters were salivating at what the next week would bring, but it didn’t create one nm (nanometre) of additional track, designed or real, and it doesn’t help us at all. And that is what I tried to convey.

Sometimes you need to use fiction and hyperbole to drive home a point.

Although I think at this point in time, everyone has done that non-fictionally on social media, around water coolers, waiting for a streetcar, and on and on.

That is the one thing that has changed since 2011. Commuter frustration has become more vocal. Usually, Torontonians are a quiescent lot. A few voices may rise up in dissent, but the majority keep their head down while grumbling to their friends and family. But now, here in 2013, the grumbling has come out into the open. The never-ending scandal surrounding Mayor Rob Ford may be drowning it out a bit, but with social media offering such an easy outlet for TTC frustration, it has not died down.

Historically, writers have used their novels as pulpits to pound out a social issue message – in an entertaining way. My favourite author has always been Charles Dickens, who was a master at that. I’m not as prolific with words as he is, but I hope that in the way my characters get around town and in how I describe the subway system, the streetcars, the bicycle traffic, and the cars in Time and Space, that I have made it exceedingly clear how much our leaders have failed us and how inadequate the TTC is to the population size.

Time and Space Final Ebook 1256x1910 Shireen Jeejeebhoy 18 May 2013

Time is kidnapped by three boys from the future, then dumped in the future past to die. She finds shelter with a mysterious man whose name is Space, and she must either adapt or find her way home before the boys catch her and dispose of her forever.

“I am reading Time and Space by @ShireenJ and loving it! What a great writer!” – @Mariam_Kobras, 26 May 2013

Buy Now @ Amazon & Smashwords & Kobo

Brain Health

COTA Case Manager, the Saga Continues

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Update to Case Management drama:

I met with my case manager from COTA (see previous post for the story so far). I told her to get to it; I didn’t even give her a chance for her usual draining chit-chat. I needed my energy to get through the session with her; thankfully my moral anger kicked in to lend me energy and thinking power. I first pried the phone number of the Homemaking service from her by asking her point-blank for it. Later, she justified not giving me the phone number two months ago — she didn’t think she had to give it to me because I already had it, because she thought in that vague way of hers that I had already received help earlier from them. I’m amazed my eyeballs didn’t fall onto the table. I demanded to know why I’d ask for homemaking help if I’d already received it? She repeated she thought I had it. She was thinking of the student who helped me for a few months before quitting abruptly. Not exactly a provincial Homemaking program.

Anyway, after I got the phone number, I asked her for all the information she had gathered to date. Of my list of items, she had three done — sort of. She had a phone number for one; 311 for the second; an information sheet from the City of Toronto for the third. (And, oh yeah, an application for the funding help I’d been receiving for years.) It took her since October 18 to gather that. She said she had to research them on the Internet, that she doesn’t know about these Toronto services.

Her territory is the City of Toronto. She’s been working in this job for at least two years, but she didn’t tell me precisely how many. I do not have esoteric needs.

She also doesn’t know what the Rotary Club offers, which I’ve been told by two doctors and a therapist should’ve been contacted on my behalf for at least one item on my list that she said there was no help for.

As I mentioned in my previous post, she had totally gotten some of my needs wrong. But she denied it. She insisted that she’d gotten my list all correct and hadn’t asked me to repeat any of my needs in a follow-up phone call. She insisted that she had listened (the implication being I’d misspoken — imagine, me, the “articulate one” telling her I needed something I’d been receiving for years). When I informed her of her error last week and what she should’ve been looking into, she didn’t leap to correct it because she “wasn’t at work.” Apparently knowing she was meeting me today was not enough incentive to make things right.

She constantly apologised: “I’m sorry you feel this way.” Would you feel apologised to with those words? Nope, me neither. I finally told her to quit it, that if she was truly apologetic, truly understood how much she’d screwed up, she’d say she was sorry for screwing up. I then lectured her on ehealth and computerization. I have no idea if she took in anything I said. She just sat there. She did intimate at one point she didn’t want to carry a laptop around on the TTC. Good thing all the students and biz folk I see on the subway with their laptops don’t agree with her. They’d get much less done and make errors, as well as spending twice the time on the same task, transcribing pen and paper to computer when they got home or to work. I rhymed off a list of lighter computer devices she could carry with password protection. It made me wonder if any of these people pay attention to the world-shattering Apple launches.

I called her boss. She said she’d talk to the case manager and get back to me. CCAC did not react like this when I called about a disrespectful OT; they believed me — they didn’t say they had to talk to the OT as if to imply they needed verification — and immediately looked for a replacement.

After she left, I needed  a nap. But I stopped myself because I need to sleep at night. However, the rest of my day has been disrupted because as a person with a brain injury, it’s very difficult to refocus. I went from anger to weariness to distractedness to upsetedness. That’s when I called my MPP to see if I could be un-split. Only people with brain injuries — the folks who by the very nature of their injury need things to be simple — are split between COTA and CCAC. As I understand it, no one else is. People with cancer get 100% of their help, including case management, from CCAC. I’m ready to cry over this injustice and unnecessary bureaucracy. I’m hoping by writing this, by venting, I can get back to my day.

Update 4 Jan 2012:

The case manager’s boss called after speaking with the case manager. She wanted to discuss some issues. She wanted to persuade me to continue on with my case manager and was wanting to work things out so that could happen. I cut her off. I wasn’t working with that case manager, and I didn’t want any contact by any means with her. She tried again, and I cut her off again. So then she said there were issues that had to be discussed. There is nothing more upsetting than talking to someone with a sweet, gentle voice who implacably talks to the patient as if they are a problem, and in this case, will not meet the patient’s request for a new case manager unless the patient gets abrupt and brusque and refuses to discuss working with the problem case manager.

She began with miscommunication. If I wasn’t so upset — and one thing she knows as everyone in the brain injury community knows is that people with brain injuries have labile emotions, you never know what you’re going to get — I’d have laughed. She was talking to the person labelled articulate. I am always and immediately labelled as someone who communicates well by every therapist, every rehab person, every psychologist and doctor I’ve ever seen right from 2000 on. Any miscommunication was on my case manager’s part, but by wanting to discuss this with me as an issue, she was implying that my case manager had listened well and got down all the information correctly, thus it was me who had not communicated my needs well, who was the problem. I told her I had no trouble working with anyone else and in communicating my needs to anyone else; everyone but my case manager knows what they are.

She moved on to the issue of computers that my case manager had said I talked about. Basically, if I expected their case managers to have computers or iPhones, I should consider not receiving service from them. They don’t have funding, she said. (Why would a therapist need an agency to fund their own smartphone anyway? In today’s society, every professional should have one regardless, but apparently in the eyes of OTs, not.) Yet my very bringing it up in the first place, then suggesting we discuss it outside of the case manager issue was seen as a reason for me not to receive service from COTA. She told me I have until next week to think about it, to think about whether I wanted to receive service from them or not when she would call me back — next week because the case managers weren’t in the office (not at work?) this week and she wouldn’t be able to find out who’s available to take on my case until they come into the office next week, not that she’s hopeful there would be someone available.

It seems to me that by using that nicest-possible-we’ll-talk-to-you-when-you’re-less-upset voice and suggesting I need a week to think about it, she is threatening to remove services from me if I don’t behave. It isn’t about me having a choice, for COTA is the only publicly funded entity that provides case management services to people with brain injuries, and she knows it. Imagine what effect this would have on an ill or very injured person? They would comply and drop their request. They would put up with bad health care for fear of even that being taken away. And they would not have their needs met plus have their health worsened through the stress of thoughts of abandonment as well as the stress of being forced through gentle, implacable persuasion, to work with someone who doesn’t listen and doesn’t meet their needs.

Update 11 Jan 2012:

On Monday, the COTA case manager boss called and gave me the name of my new case manager. That’s it. Short and sweet. I was so astonished. And relieved. The only strange thing was her reaction to me asking her to spell out the new case manager’s name. I have a hard time understanding names over the phone, and so I’ve gotten into the habit of asking people to spell them out. I usually get an uh, well, never-had-to-spell-out-a-simple J-A-N-E before kind of response. But they do spell it out. She wouldn’t. She spelled out the case manager’s last name but neither spelled out the first name nor repeated it. You’d think someone working in the area of brain injury would be familiar with auditory processing or hearing problems and would not only ensure a clear phone line, but also enunciate names clearly and repeat them slowly. Sheesh.

The new case manager called me today to make an appointment to see me and right off the bat spoke slowly (not loudly, which is what people usually do when asked to speak slowly, much to my ear’s distress) and enunciated every word. It was a bit irritating, but then I told myself I had no — zero, zip, nada — problems understanding every word, including the name. He repeated his name at the end of our conversation without being asked to. How unusual after my recent experience. Hopefully, auspicious.


Voting the Rejecting Way

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I don’t want to vote. The First Past the Post system means if I want to vote for a particular party but don’t like the candidate, I have to vote for the candidate to register a vote for the party. And if I like a particular candidate out of all of them but not the party they represent, I have to choose between candidate and my preferred party. It’s nuts.

To make matters worse, our Parliament and Legislatures are becoming more and more about The Leader and the MPs or MPPs are simply seals that bark to command. And so voting for candidates because of who they are and their background is becoming meaningless. You’re simply voting for a human to keep a seat warm in their party’s section of Parliament or the Legislature. It’s disheartening.

But then I’m reminded that people died to keep Canada a democracy, to keep it free from fascism and totalitarianism. I’m reminded that we have a Charter of Rights and Freedoms, with teeth, that came about because we’re a democracy. And a key way to keep Canada a democracy is to vote. I’m reminded that it’s the people’s voice that keeps the police and politicians from blanketing our highways and cities in CCTVs, which allow tracking of our every move and strip us of anonymity, a hallmark of democracy. Autocracies need to, and like to, track its citizens wherever they are. I’m reminded that it’s our voice expressed through votes that decide how much of our privacy will be stripped from us, whether we approve the arbitrary use of police force okayed by Premier Dalton McGuinty and the Liberal government during the 2010 G20 in Toronto.

But what to do when the First Past the Post system disenfranchises you, when you don’t like the three big parties, when you don’t like the candidates in your riding?

Remember first that if you don’t want your democracy usurped by something else — by an autocracy, by one man deciding your fate — then use your vote.

If you don’t like the three main parties, check out the Greens. They may surprise you as reflecting you and your political wishes. And perhaps see a vote for a smaller party as sticking it to the big guys.

And most importantly remember you can reject your ballot. It’s a protest at the ballot box.

If everyone who sat home on voting day went to their polling station instead to reject their ballot and have that rejection registered, then the politicians — and the media — would have to take notice. And maybe then our leaders would seriously bend their minds and actions to improving our democracy.

So go and reject your ballot! I am.

Brain Power

Jack Layton: The Spirit of His Legacy

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Words fail me. That’s what I tweeted this morning, after I saw the Breaking News on Citytv’s Breakfast Television, as I was massaging my muscles post-weight session, that Jack Layton had died. That first announcement was brief, and Cynthia Mulligan had a hard time switching gears to traffic. Switching gears. That’s what’s happening today.

Being a long-time Torontonian, I have “known” Jack Layton since he was first elected to Toronto City Council. Back then the city was the centre of what was Metropolitan Toronto comprising Toronto, Scarborough, North York, Etobicoke, East York, and York, all of which were at odds with each other. Today, we are all one big city under the moniker “Toronto” and still don’t like each other. In the 1980s, Layton entered the spacecraft-shaped Chamber and roared his protest. That’s pretty much how I remember Layton: one big noisy antagonistic protest. It came to a head for me during the SkyDome building days when CityPlace (if I remember the name right), owned by CN at the time and in charge of developing the lands around the SkyDome, was almost brought to a halt by Layton because he said the buildings had to be one hundred percent social housing, else no building. No kidding. That’s why there was lots of green space, one narrow park dedicated to the Chinese rail workers, a driving range, a concrete crushing plant and no building for years. Needless to say,  I was heartily glad when he finally lost an election shortly after that. Since the Art Eggleton days, Toronto has been about destroying our past and doing nothing in the present, and Layton seemed to be a big part of that. I did not like the man, and I was not alone. Many of us cheered at his loss.

After three years in the wilderness, Layton returned to municipal politics. I was not happy. And then I began to notice he had changed. No more was he one big bossy noisy protest; instead he was envisioning solutions to current problems and using larger and larger stages to make life better in Toronto. Life in the wilderness had made him think. His demeanour had changed from fist and protest to energy and grins. He infected people with the idea that Toronto wasn’t about petty left-right bickering but about creating an urban space in which rich, poor, and middle class lived, worked, and played. Although he had become a driving force in the Canadian Federation of Municipalities, I hadn’t realised he was dreaming even bigger until I read the news that he had become leader of the NDP party. I’m not sure why that surprised me. Toronto City Council bans party politics, but we had all known Layton was an NDPer, even before the days the NDP Party began blatantly showed their backing of certain municipal politicians. Still, I had always seen him as a city man not as a national politician. But then eighty percent of Canadians live in cities. Why should we not be represented by a politician who loves cities and knows how to make them work?

The election he started talking about becoming Prime Minister, even in the face of scoffing and rolling eyes, is when I knew Layton had transformed himself  completely and methodically over the years. He had become a politician with an unattainable dream. And he was going for it.

In the last few years, Layton won me over completely. He had a happy optimism that wasn’t Pollyannaish or head-in-the-sand-refusing-to-see-reality. No, it was an optimism that faced reality and still rejoiced in the coming triumph while planning how to make it happen. It was so rooted in reality, it was infectious. He was savvy and understood that by lifting people up you could get more things done that helped people, made life better, made us productive and energetic, made Canadians want to do more for their country together. He was tough. You can’t make statements like “I’m campaigning to be Prime Minister” and then weather all the tomatoes and eggs and laughter lobbed at you and keep dancing forward without being tough. He was resilient. He took the failure, thought on what kind of politician he wanted to be (apparently even before his big public failure of losing an election), and came back with bigger dreams and an inspiring way. He had courage. I’m not sure when he decided the NDP would form the national government, but a person can’t envision such a thing and plan for it as if it is entirely possible without having courage. Even with the plethora of support he enjoyed from family and friends, it was and is a breath-taking dream. He had energy. Some people have loads of energy; some don’t. But I believe that pessimism is an energy-stealer; division is an energy-stealer; dwelling on failure and nurturing hatred for not getting your own way (politically) is an energy-stealer. Optimism gives energy; bringing people together creates more energy for each person; dwelling on failure long enough to figure out why and thus come up with a solution then sticking the failure in the past gives energy; shrugging off not getting your own way and figuring out how to do things better puts the focus firmly on the present and propels a person into the future. I think that’s why so many people liked watching him: his energy and joy flowed out of him and into us.

On July 26 when we heard the news of Layton’s cancer, I wrote:

“… when you are at the point of achieving your greatest goal … there is something intensely grieving about receiving that kind of news. One moment, you are happy, laughing, loving each day, anticipating with excitement the fulfillment of all your work; the next, you’re facing the death of your dream, and in Jack’s case, perhaps his very life.”

That is what makes this news intensely tragic. Layton had worked a long time, had spent a long time thinking and planning, to make his dream a reality. And it wasn’t his spirit that killed it; it wasn’t lack of opportunity or even ill health; it was an evil process that today’s medical science and knowledge was helpless against.

When I saw him on TV on July 26th, I first saw his body: emaciated, pale and flushed, failing. My heart sank. Then I saw his eyes, his spirit. So strong, so determined, full of hope and planning. If spirit alone could delay death, Layton would be alive. After all, it was that spirit that had already done the impossible: gotten him through the first six months of this year, including an election. His fractured hip puzzled me – the explanations given didn’t seem to jibe to me – and his shrinking frame not just from diet alone. Yet he showed more energy than Prime Minister Stephen Harper and then-Liberal leader Michael Ignatieff combined. And he triumphed. He achieved the penultimate step to his unattainable dream. That’s what optimism, courage, facing reality, yet dreaming big do for a person. And not relying on contacts or others to make things happen.

I am overwhelmed by the tragedy of his death, of witnessing the death of a man who thrived on life and was cut down as he was seeing the fruition of all his work. Only four more years, and perhaps he would have become Prime Minister. I am also overwhelmed by the tragedy for Canada. We have a Prime Minister who thrives on division, who is about as inspiring as a wet teabag. We have an unproven Official Opposition who doesn’t seem to have a member with Layton’s combination of dreaming and pragmatism and ability to negotiate. We have a Liberal party who still doesn’t seem to get why they were tossed out. And if Toronto is any indication, we have a country full of middling politicians and apathetic people who all believe the best we can achieve is mediocrity, the best thing to do in all cases is nothing or dreaming small, and the best dreams are not about people – rich, poor, middle class — and how to make their lives better.

After my last injury, I became afraid of having dreams. It wasn’t the first time injury and events out of my control had derailed my dream. Previously, I had been able to pick up and get going again, but my closed head injury put paid to my dream – I heard the final clanging shut of that door six years post. And then help arrived out of the blue. Still, I remain fearful of dreaming, for to me dreaming equals bad things happening. The power of Layton is that he never stopped. His legacy is for us to switch gears, from envy and division, from apathy and learned helplessness, from waiting for others to do – to being the dreamers and doers ourselves.

No man is indispensable. But what Layton gave us is. Layton did seem to understand how tough life is for the vulnerable in society, and so few politicians really do. They spout trendy phrases but act in a way that makes life more difficult. And so perhaps Layton’s best legacy is not to look for an NDP politician to replace him, but to take on his best characteristics and to dream the unattainable for our country, our fellow citizens, and ourselves, and, through our actions, force politicians to make our dreams happen. Illness and brain injury has a dampening effect on how much one can physically do yet our spirits can still act. Perhaps those of us with low physical energy cannot march in protest, but we can goad others into marching. Perhaps we cannot write letters every day, but we can blog or tweet our thoughts directly to MPs every time we can, even if all we can is once every six months. Perhaps we cannot express ourselves well, but expressing ourselves even in a few, short words is better than not at all. And most of all, we can mimic Layton’s resiliency. His seminal failure was not  of health but it was a mammoth one nevertheless, and he came back like the proverbial cat.

I may be afraid of personal dreams, but I can dream for my city and my country. We can together adopt Layton’s brand of optimism, face reality then let our minds wander freely into amazing visions of better things, and ask ourselves why not?