Personal

Hope Malaise

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My first blog was a political one. Hope in the form of writing fuelled it. I titled it “talk talk talk” because, despite my brain injury putting dampers on my thoughts and talking, I like to talk, debate, engage. Maybe that’s why my first followers thought I was male then most bailed once I outed myself.

Checking out the Lunch Offerings on Dundas Street

Being able to write about politics — and then later tweet on them — gave me a sense of agency, of control over one aspect of a life that was not under my control. Brain injury, health care systems, the insurance mill, other people controlled almost every aspect of my life.

But that began to change gradually.

I began to gain personal agency as my brain injury healed. I didn’t have to use the alpha session on my audiovisual entrainment (AVE) device to spark my imagination into life. It sometimes sparked on its own, in a shadow of my old self. I didn’t have to get door-to-door transportation and tell my legs to keep moving in order to walk to a destination and/or take Toronto’s transit system, the TTC. I no longer had my brain dictating reaction to a threat to my person, agency, independence: my prefrontal cortex, after years and years of brain biofeedback training and discovering AVE sessions that worked better to calm injured neurons, had gained ascendancy over brain injury anger.

Writing on politics or animals or television shows continued to feel good; then when I was allowed out from anonymity, I expanded into Twitter, this blog, books. Recovery slogged upward; writing kept me breathing. Even when shock slayed my blogs, I kept up on Twitter. Even when my neurodoc took away my hope for a full recovery and a regained social life, I kept on tweeting. I somehow even managed to pull book manuscripts out of the gasping recesses of my brain every November for NaNoWriMo.

But

  • the politics of meanness disguised as speaking up for the little guy;
  • my worsening financials because highly educated people doing financially well in life resent taxes more than they want to help their fellow citizens out, never mind their family member, in accordance with their declared faith and values;
  • no remorse for the selfish, petty, resentful way people have treated me and instead a double downing of it;
  • justification for siding with the bullies, whether in politics or personal life, and not standing up for the isolated, the hurting, the permanently injured through no fault of their own in order to lift them back up into purpose-filled lives;
  • the health care system through doctors and bureaucrats not funding nor adopting neuroplastic models of therapy for any kind of brain dysfunction that would restore injured or malfunctioning neurons better than the current neurochemical, neurosurgical, or strategies-only model;
  • the continual ignoring of how inaccessible the TTC is, the city of Toronto is, by both politicians and the Ontario Human Rights Commission;
  • people who consider themselves good threatening the lives of other humans they consider bad because they’re walking across roads or along sidewalks legally;
  • people who consider themselves good choosing to act in ways that threaten the health of visually impaired, those on wheels, who have visual-spatial or balance issues, etc.;
  • the latent polite racism of progressive Canadians revealing itself in its reaction to the only non-white Federal party leader and the first one ever elected as well as to an Indigenous female politician who stood up to the white male Prime Minister;
  • the disenfranchisement of women in purdah* by white Canadian women declaring these non-whites have freedom of choice when the entire point of purdah is to block women from choice;
  • the endless parade of white men being elected as city, provincial, federal leaders as if the fleeting appearance of women on the scene was anathema and must smacked down while at the same time one party declares a man to be the same as a woman leading the party as if declaring himself pro-choice, appointing the first 50/50 cabinet, and throwing out two women who challenge him makes him so;
  • and entering another federal election with First Past the Post because one white man had decided against the wishes of a cross-country consultation to cancel his party’s electoral reform promise and all his female supporters who know, without a doubt that without proportional representation they will never achieve parity in politics, fell into line because, well, he’s a feminist, right?

— has made me want to shut the doors of my home and never leave again.

I usually experience a significant drop in my energy during September, but this doesn’t feel like the usual. This feels like the choices people make as individuals and as a society to resent those who struggle, to fear the injured as if by fearing they will not become like us, to disempower those not like them, to steal hope for having someone come alongside to support one into a purpose-filled life — steering me toward the quicksand of despair and shoving me into it hard.

Tempt Satan to Despair
Man holding sign that says Don't Forget About Us

Without electoral reform, we will never have a Parliament of collaboration but continue the state of oneupmanship. Your side will never always win. Eventually if you’re a winner now, you will lose.

*Pardah or purdah is a religious and social practice of female seclusion prevalent among some Muslim and Hindu communities in South Asia. It takes two forms: physical segregation of the sexes and the requirement that women cover their bodies so as to cover their skin and conceal their form. (From Wikipedia)

Personal

I Voted

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For eighteen years, since my brain injury, I’ve not voted on my own on Election Day. I’ve had to beg for rides, used special ballots (that was a weird experience), forced to decide who to vote for ahead of time and before I was ready because my poll is far enough away to not be accessible. I couldn’t even find it for the longest time because of my navigational and memory challenges.

Accessibility isn’t just a wheelchair ramp. It’s also how close it is. How easy to find.

When I came of voting age, we could vote in our neighbour’s house. Now we have to schlep to schools and churches and apartment buildings. People with disabilities don’t want to ask for help to vote. They want to be able to do it on their own, when they want. Inclusive design means ensuring independence.

But this shrinking of polls reflects a change in how much we take our democracy for granted. We complain about our politicians but fewer and fewer want to contribute to making the electoral process possible. And fewer and fewer want to vote. City election turnouts are particularly perplexing because wherever you are, whatever stage in life, the decisions of politicians and the city affect you. When you don’t vote and you stay silent when new Premier Doug Ford undermines the election, you have no say in your own life.

You have no say in your commute.

You have no say in ensuring your sewer doesn’t back up.

You have no say when community cops disappear from the streets.

You have no say in whether your road is repaved or not.

You have no say in creating a better park near you.

You have no say in affording where you live.

And you particularly have no say in having the city comply with accessibility laws and ensuring inclusive design in all developments and infrastructure.

When you vote, you learn who your representative is, which means when you have a problem, you know who to reach out to. And you will have a problem only a city politician can fix because calls to 311 may not be enough. Constituency work is the heart of good City Councillors.

Did you vote?

Personal

I Voted

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For eighteen years, since my brain injury, I’ve not voted on my own on Election Day. I’ve had to beg for rides, used special ballots (that was a weird experience), forced to decide who to vote for ahead of time and before I was ready because my poll is far enough away to not be accessible. I couldn’t even find it for the longest time because of my navigational and memory challenges.

Accessibility isn’t just a wheelchair ramp. It’s also how close it is. How easy to find.

When I came of voting age, we could vote in our neighbour’s house. Now we have to schlep to schools and churches and apartment buildings. People with disabilities don’t want to ask for help to vote. They want to be able to do it on their own, when they want. Inclusive design means ensuring independence.

But this shrinking of polls reflects a change in how much we take our democracy for granted. We complain about our politicians but fewer and fewer want to contribute to making the electoral process possible. And fewer and fewer want to vote. City election turnouts are particularly perplexing because wherever you are, whatever stage in life, the decisions of politicians and the city affect you. When you don’t vote and you stay silent when new Premier Doug Ford undermines the election, you have no say in your own life.

You have no say in your commute.

You have no say in ensuring your sewer doesn’t back up.

You have no say when community cops disappear from the streets.

You have no say in whether your road is repaved or not.

You have no say in creating a better park near you.

You have no say in affording where you live.

And you particularly have no say in having the city comply with accessibility laws and ensuring inclusive design in all developments and infrastructure.

When you vote, you learn who your representative is, which means when you have a problem, you know who to reach out to. And you will have a problem only a city politician can fix because calls to 311 may not be enough. Constituency work is the heart of good City Councillors.

Did you vote?

News

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

News

Take the TTC Survey Till February 11, Speak Up for Accessibility

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The TTC is running a survey purportedly on service standards yet with nary a word on accessibility and skewed towards not building subways.

Service includes accessibility. Service includes how easy it is to use the system. Yet the survey doesn’t include one question related to cognitive, physical, or mental accessibility, other than pitting the number of route transfers against local bus options. That should not be an either/or option.

This survey is strictly geared to the young, healthy downtowner who already has subway access. It seems like it’s designed to justify not extending the Sheppard subway line to Scarborough Town Centre as originally designed, perhaps cancelling the Scarborough subway, and putting off the Downtown Relief Line.

Route transfers – the bane of my life – is the only remote nod to accessibility.

The best way to get attention is to stay focused on one or two things: route transfers and subway line names. So I urge you to take this survey and select the option “Reduced need to transfer from one vehicle to another” everywhere it’s mentioned as the Most Important. Or if it’s not in one of the options but “Routes that are more direct – on major roads only (faster travel and longer walks)” is, choose it as Most Important, for it’s code for subway line.

When both options are listed choose “Reduced need to transfer from one vehicle to another” as Most Important because it supports both extending the Sheppard and Bloor-Danforth lines as well as putting in more bus routes. In this case, you may also see an option for “Shorter walk to station/stops” or “Routes that are less direct – serve local neighbourhoods (slower travel and shorter walks).” These are code for Scarborough LRT over extending the Bloor-Danforth line; same with Sheppard Line. Choose those as Least Important when choosing “Reduced need to transfer” or “Routes that are more direct” as Most Important to emphasize you want the TTC to build the bloody subways already.

Fighting for more local bus routes will soon be easier with Uber coming into the market anyway, so we don’t need to agitate for those. But we do need to agitate for subways – a proper seamless transit backbone, not a hodge podge of subways and LRTs-trying-to-be-subways, requiring more energy from us to use and transfer from one to the other.*

You will then be asked either/or questions.

Continue to choose for fewer transfers, eg, choose “Service that allows me to make my trip on one vehicle, but involves more stops in local neighbourhoods resulting in a longer overall travel time.” This is obviously a bus that goes from A to B. The alternative “Service that provides a more direct service, but requires one or more transfers resulting in an shorter overall travel time” describes adding an LRT and transfer point at the end of the Bloor-Danforth and Sheppard Lines instead of extending the subways.

Choose “A longer walk to my stop if it means a shorter travel time to get to my destination.” This is code for subways because for some reason, the thinking is subways always require long walks to get to them. (In London, UK, that’s not the case because they’ve continued to build subways over the decades unlike us.)

“A shorter walk to my stop if it means a longer travel time to get to my destination” is code for LRTs (or buses instead of subways) because the expert opinion is walks to LRT stops are always shorter than subway stops. Um, no.

If you get an either/or question about buses, I chose “walks to/from bus stops with less direct and less frequent service through local neighbourhoods resulting in longer overall travel time” because buses specifically should be about local access and short walks. The alternative is about using buses instead of LRTs, streetcars, or subways. I don’t feel like being shoe-horned into buses instead of being able to use a streetcar or subway.

You will then be asked to rank your top 4 priorities. Put “The number of transfers you are required to make” at the top and “The time it takes to walk to/from your stop” at the bottom. Yes, the latter is important, but this is code for not building more subways. If people say they want shorter walks, the experts will say, see, people don’t want subways. They want LRTs. I put second “The time you wait for the bus/streetcar/subway” because frequent service on any kind of route is important plus it emphasizes the need for subways.

Speaking of subways, in the final screen asking for your opinion about the survey, in the box where you can type your thoughts, ask why no accessibility questions and to change the subway line names back to their original name and ditch the numbers. An example:

“Why were there no questions about accessibility? Why no questions about subway line names? Changing the names to numbers has made it harder to use. Please change subway line names back to their original names and ditch the numbers.”

Here’s the survey. Please take it and speak up for the only accessibility issue that they address – reducing transfers – and speak up for restoring subway line names. Thanks!

http://www.ttc.ca/TTC_Surveys/index.jsp

*I believe we need a coherent network of buses for local use, LRTs as feeder networks, and a robust subway network mirrored on the surface by buses that cover off the streets in between subway stops for local commuters. We do not have a robust subway network at all. London, UK is a great model. Using LRTs instead of subways ignores how geographically large Toronto is and the increasing volumes of people who need to use high-speed public transit.

Books

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

Personal

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 Health

Brain Injury: the Government Ignores, the People Remain in the Dark

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BIST (Brain Injury Society of Toronto) was founded in 2004 and has grown to 469 members, as of this week’s Annual General Meeting (AGM). I looked around at the 50? 40? 70? or so members in attendance and was rather surprised. But as the AGM progressed I thought about those growing numbers and BIST’s new focus this past year on fundraising and awareness, as reported by the various committees and 11-member board.

But from the abysmal brain injury care in Ontario, you wouldn’t know there is an epidemic out there.

When I first joined, I had no idea who was on the Board and who volunteered, even though I had a good sense of who were the active members with brain injuries from falls, meningitis, crashes, tumours (no hockey). Today, members of the Board are making a concerted effort to get out to the meetings and making known who they are. And by the end of the evening, it struck me that like the Board, putting ourselves out there where we live and engaging is what we people with brain injuries need to do.

Everyone knows about cancer; breast cancer is the charity du jour. Half the population suffer from heart disease, and the other half know someone who’s had a heart problem. Rick Hansen has done a stellar job of bringing attention to spinal cord damage, and people in wheelchairs are visible representatives (even if that is not the reason why they must use a wheelchair). But unfortunately brain injuries are invisible, though plentiful.

The Brain Injury Association of Canada says “thousands of Canadians incur a traumatic brain injury each year the majority being young adults.

And so, as usual, we Canadians must look to the US for detailed stats (and that was true even before Prime Minister Stephen Harper nixed the scientifically sound and comprehensive look at our population, the long-form census). Every year, 1.7 million Americans sustain a traumatic brain injury. Using the ten percent rule, that means 170,000 Canadians have their brains damaged each and every year. And like Americans, twice as many men as women.

As I listened to the reports at the AGM, I thought how daunting the task and how needed to make people aware of brain injury and its devastating effects on the injured. Hockey fans are becoming aware, but only as it applies to hockey players and with incomplete understanding of its lifelong effects.

Sidney Crosby appeared recently with his doctors to talk about his concussion and their expert opinion that when he is one hundred percent better, it will be like he hadn’t had a concussion, that his risk of another concussion will be back to what it was before his two.

Hahahahaha!

How can they know that? There is no technology that can look at the brain in such detail so as to know the brain matter is one hundred percent healed and regrown, that there are zero changes in neuronal metabolism and structure.

The science is so new and still in the dark ages, relative to heart disease or cancer treatment, that to say we know with certainty the future and the risk is full of hubris. But then I’ve discovered too many doctors, particularly neurologists, are like that — think they know it all in the face of great ignorance, think they recognize brain injuries when the cognitive ones zip right over their heads — and so why would the population be any more knowledgeable?

Researchers are finding that people who have traumatic brain injury have a higher risk of Alzheimer’s, Parkinsons, and so on. Yet they cannot say if the long-term effects of brain injuries are different in people like me who’ve had active treatment for cognitive deficits. But to assume not is a dreamy, potentially dangerous assumption.

I’ve met people who’ve experienced bad bangs to the head but with no broken skull, maybe only temporary unconsciousness, which they’d shrugged off and if they saw a doc, told it’s just a concussion, watch for a couple of days, then should be fine. Yet when they hear about some of my difficuties, they go, “hey, I have that too.” They always thought whatever “that” was was normal. It isn’t. I never had these injury-related issues pre-car crash. Most people don’t. Yet they had an impact on these people’s lives, and because they never made the connection, they didn’t understand the problem, never mind how to heal it and improve their lives.

It doesn’t help that even if you recognize you need to see someone about it, you can’t in Ontario because of lack of funding for neuropsychiatrists, no funding for psychologists who are on the forefront of active treatments, and severe cutbacks to community care. When no one knows about brain injuries, except as hockey concussions, why would the government fund adequate care?

Crosby and his docs have presented his concussion as healable as a simple broken leg, just takes longer. Even when concussions are recognized as real injuries with bad effects on the brain, they’re still represented as happening only to hockey players and having no lasting effects, thus no big deal.

Yes, the AGM theme is right: we need more awareness to stop injuries, to have access to good treatment, and to save the lives of hundreds of thousands of the walking wounded.