Butterflies in My Stomach: The true story of a woman with Down syndrome who overcomes discrimination, and her own fears, to blossom into an artist.
“Butterflies in My Stomach” is Teresa Pocock’s video project. It’s a pitch to produce a video which tells Teresa’s story about overcoming discrimination — and her own fears — to blossom as an artist in the Downtown Eastside of Vancouver.
Here is Teresa’s 60-second StoryHive pitch:
Butterflies in My Stomach: Synopsis
This is the true story of Teresa Pocock, a woman with Down syndrome who has overcome discrimination and her own fears, to blossom into an award-winning artist and author. Four years ago, at age 49, Teresa was written off as “incapable” and was forced into a old-age nursing home in Ontario. Teresa did not want to live there. Her father and a sister rescued her, and Teresa moved across the country to B.C. to start a new life. “Butterflies in My Stomach” will tell her remarkable journey: How 26,000 people on Change.org, as well as civil rights organizations, and the media, helped Teresa get an apology from the government. And how Teresa’s new community in Vancouver, helped her to have confidence and emerge as a professional artist and a self-advocate.
What are they thinking? How many ships does it take for something to go wrong?
One accident with a Kinder Morgan Oil tanker carrying diluted bitumen — dirty tar sands oil — and our beautiful coast could be destroyed.
With almost three ships sailing through the Burrard Inlet everyday, the water will be contaminated with more ballast water and leaking engine fuels and chemicals.
With scores of giant industrial ships chugging through the Salish Sea constantly, marine mammals — like the endangered Southern Resident Orcas in the Salish Sea — will become disoriented and lost because of pervasive sound pollution from the ships, which harms their ability to navigate and communicate.
With hundreds of ships burning low-cost bunker fuel our air will be polluted with even more carbon and particulate matter.
How many ships? The numbers…
These statistics are based on the published estimates by Kinder Morgan, Trans Mountain pipeline and the Port of Vancouver.
* Projected numbers for ships are rounded to the nearest ten (10).
** Centerm terminal near downtown Vancouver is proposing to expand from “current 900,000 TEUs to up to 1.5 million TEUs”. A TEU (Twenty Foot Equivalent Unit) is the unit of the capacity of a container ship. If we assume average docked ship carries 6,000 TEUs, then we can estimate that currently 150 ships/year expanding to 250 ships/year. In fact between Nov 20, 2016 – Dec 20 2016, DP World Vancouver has scheduled 26 Vessels docking at Centerm, which is about 300 ships/year!
The bottom line: Too many ships. Too much pollution.
On November 27, 2013, at the age of 49, Teresa was forced into a nursing home against her wishes and against the wishes of her father. Four days later, Teresa’s father went to the nursing home, and as her Senior Power of Attorney signed the paperwork to have her discharged, and Teresa returned home.
Police Were Called to Force Teresa’s Return
But the police were called to force Teresa’s return to the nursing home. Luckily the police decided that Teresa was safe living with us.
Petition for an Apology
On World Down Syndrome Day, March 21st, we launched a petition asking the CCAC (Community Care Access Centre) and the Rekai Center to apologize for the harm they caused Teresa. Specifically Teresa is asking the CCAC to apologize for improperly taking away her human right to decide where she lives. She is asking the Rekai Centre to apologize for calling the police to force her back into their long-term care home.
However, the Rekai Centre has still not apologized. The Rekai Centre CEO, Mary Hoare, has not responded in any way to Teresa’s petition. Are they trying to ignore Teresa? Hoping that the problem will just go away?
Teresa’s human rights should never have been disabled.
That is why we need more people to sign her petition, and demand an apology from the Rekai Centre.
One pill makes you smaller.1
One pill makes you stall.2
And the ones your doctor gives you
Make you feel nothing at all.3
Just numbness4 and dumbness5 in bed.
Remember what your lover said,
“Lose your meds. Save our bed.
Save our bed.”
Antidepressant (SSRI) Sexual Side Effects:
Post Antidepressant (SSRI) Sexual Side Effects:
Symptoms of sexual dysfunction may persist years after quitting SSRIs, resulting in the complete loss of genital sensation.
SSRI Meds linked to Sexual Dysfunction: Lexapro, Cipralex, Cipramil, Paxil, Seroxat, Prozac, Celexa, Zoloft.
My Portrait of Sir Andrew Witty, CEO of Glaxo Smith Kline (GSK), as Frankenstein. for Dr David Healy’s post, Brand Fascism, which tells the story how pharmaceutical marketing seems to be perverting, or limiting, the power of medical science, because it places the interests of corporate investors, before the health of their customers.
“The 100,000 people who work for GSK are just like you, right? I’m sure everybody who reads the BMJ has friends who work for drug companies. They’re normal people… Many of them are doctors”.Sir Andrew Witty
And sure, this is an “April Fool’s” thing, but it’s actually based on some truth… If you want to find out more about the GSK approach to “Open Science” and the “sharing” of research data, you can actually sign up for the GSK Clinical Study data program. Once you’ve signed off off on their legal stuff (caveat emptor), you can request access to their trial data. Currently they have about 220 trials listed… a extremely small fraction of the total trials they’ve done. Your request will be reviewed by independent panel who will decide whether or not you can actually see the data. No promises of course! But why don’t you give it a try… I’ve signed up! ;-)
My story begins in January 2008, when I was running three times a week and training at kick-boxing. I had changed my diet and everything to get fit, even had my cholesterol checked. I was fit as a person could be. The only thing wrong was the smoking… So I went with my mum to the local stop-smoking clinic where we got to see the person who goes through your options.
Champix: “A Wonder Drug”
I was expecting to be offered Nicotine Replacement Patches but they kept going on about Champix and how it would work well for me. They made it out to be a wonder drug. I said I’d give it a try. I had to go to my own doctor to get the prescription for Champix (Chantix, Varenicline). I started to take the tablets the next day. I thought they were great. I didn’t want a cigarette after a few days and no side effects. By week two I had stopped smoking.
Champix: “I felt like killing myself”
When I got to week 10 of a 12 week course, all of a sudden, I felt like killing myself. This was completely out of character for me. I am scared of dying, always have been, so this was not right. I went straight to my doctor and told her and she told me to stop the Champix…
I stopped immediately. The thoughts went away after a few days. I thought I was fine and was still not smoking.
Champix: “A Small Risk of Seizure”
Then on the 25th March 2008 my partner Anthony woke up to me having a grand mal seizure in my sleep… I was told they thought I had autosomal dominant nocturnal frontal lobe epilepsy – ADNFLE to them… I was put on anti-epileptic drugs. I had side-effects from all of them and I was still having seizures. I just kept being told that it was all about finding the right drug for me.
Then a friend came round to see me and told me that he had just been to the smoking clinic to ask for Champix. He had taken it twice before and stopped smoking both times but had always started again within a month. This time they refused to give it to him as he had a history of a head injury and they said there was a small risk of him having a seizure because of that.
Champix: A Doctor’s Denial
Angrily I got the laptop out and looked to see if the Champix side-effects leaflet had been changed to mention seizures. It had not in the UK but it was in Canada. So I asked my neurologist if Champix could have triggered my epilepsy. Her words: “I am not prepared to put my job on the line by answering that question” were witnessed by my mum. That made me angrier. This is my life – how dare she say that.
My side-effects got worse. I could not eat or function. I told the neurologist I could not live like this for the rest of my life. She shouted at me, saying my choice was side-effects or life-threatening seizures. I ran out crying…
Champix: Finding the Truth
From that day, I have studied epilepsy, drugs, DNA, the brain, RNA and, most important, Champix… I have found links to ADNFLE and Parkinsons and other diseases that might be triggered in some people by Champix… It turns out that changes in cholinergic receptors – in either a4 or b2 subunits – can cause autosomal dominant nocturnal epilepsy. Varenicline is an a4 b2 nicotinic acetylcholine receptor partial agonist – it works by binding to the receptors linked to ADNFLE. The gene changes responsible are the first, and to date only, mutations described in an idiopathic epilepsy.
“Uninhibited behaviours” is listed as a possible side effect for Effexor by it’s manufacture, Pfizer. But what is uninhibited behavior? Is it problematic? Well, yes… According to Pfizer, compulsive gambling and sexual misconduct are covered by the term, “uninhibited behaviours”.
“How am I supposed to know what an ‘uninhibited behaviour’ was?” he said. “What a cloaking of an evil thing is that? That could be me parachuting or hang gliding or running down the beach with Speedos on! How was I to know it was going to be the type of addictive behaviours that would ruin my life?”
Efexor, first introduced to the American market in 1993, is now well established as one of Australia’s most commonly prescribed anti-depressant medications with more than 1.2 million prescriptions serviced in Australia in the past 12 months. At low and moderate doses, it acts only on the brain’s mood control neurotransmitters, serotonin and norephinephrine. But at high doses of over 300mg a day it also effects a third neurotransmitter called dopamine, which is responsible for reward-driven behaviours and has been associated with risk-taking behaviour and addiction.
It’s this dopamine effect that can cause problems, according to world-renowned psychiatrist, psychopharmacologist and author Dr David Healy. “When Efexor is taken at high dosages it triggers a flood of dopamine and becomes what we call a ‘dopamine agonist’. This can be responsible for the types of dangerous impulsive behaviours.”
The Myth of Floxing
We all like to believe that medicines work like a single magic dart that’s focused and targeted on the primary therapeutic effect.
But with most drugs, it’s more like you shooting yourself with hundreds of poisoned arrows. Some hit the target, but many, many others will hit and attack other parts of your body’s vital systems — some of which, as first glance, seem to be completely unrelated.
The Fluoroquinolones class of drugs may be the worst offenders that have ever been approved by the FDA. Branded with names like Levaquin, Cipro and Avelox, they provide a horrific example of how a medicine can cripple and affect every system in the body. And what’s worse, the side effects causes by Fluoroquinolones do not end when you stop taking the drug, leaving many people crippled for years, and even decades after taking just one pill. Read more about this in Dr. David Healy’s post on RxISK.org: The Myth of the Magic Bullet: Flox Tox
The idea behind the illustration: When Venus (by Bouguereau) takes Levaquin (by Ortho-McNeil), she gets transformed into St Sebastian (by Il Sodoma) and martyred with a thousand arrows.
Quinolones (fluoroquinolones) are a class of antibiotics that are currently one of the most commonly prescribed antibiotics in the world, given out in hundreds, if not thousands, of prescriptions daily. They are very powerful medications prescribed to treat a wide variety of infections but were never meant to be used as a first line of defense against routine infections, which is how they are often prescribed today. Like all antibiotics, quinolones, have the ability to cause side effects. However, what differentiates this class of antibiotics from others is that quinolones can cause severe adverse reactions that can disable the healthiest of individuals creating long lasting injuries.
(It’s pretty hard to change the world, if no one wants to follow your thinking…)
Curtis Faith has been asking us all about stories. What is your story? Who is the hero? How will it end?
Good questions, because stories provide a powerful framework for spreading ideas. This is especially true if your ideas are different, challenging, and could seen by ordinary folk as a little bit “too newfangled for practical application”.
Randy Olson, the scientist-turned-filmmaker, regularly lambastes the academic/science community for getting so caught up in the pointy-headed details that they completely forget how real communication happens. Randy is the author of the wickedly brilliant and funny Don’t be Such a Scientist.
Yet most scientists (and other big idea people) don’t get it. Despite the fact that there’s tons of “peer-approved” research demonstrating that what you say (the details) is NOT nearly as important as how you say it (your communication style!).
The thing is, if you want to move your idea from the edge into the mainstream, from the future to the present, you have to package it. Style it. Make it easy-to-get and attractive.
This is not the same thing as dumbing it down. It is more about upping the drama, raising the stakes, and making it personal! It’s all about creating emotional resonance.
That’s why, especially for the “issue entrepreneurs”, stories are the key to changing the world…
And no one is better at telling stories (that move a big audiences) than Hollywood. So maybe we should drop our guard, and our biases, and steal a few tricks from tinsel-town. Well, I have two favorite screen-writing books, Raindance Writers’ Lab by Elliot Groves, and Save the Cat by Blake Snyder. Both writers pull apart, and dissect the Hollywood story to show us how they are made. Here is a summary of the key components.
Hero: A person on the brink of change, who realizes that the status quo is not sustainable.
Problem: The hero’s problem. It needs to be personal. It needs to be urgent. And the stakes need to be high.
Goal: The hero must have a single goal. The hero’s plans (the way they try to solve the problem) may change, but the goal never changes. When the hero achieves the goal, the story is over.
Flaw: The hero must have a personal flaw — ideally a psychological or moral weakness — that they must recognize and deal with, before they can achieve their goal. This flaw often points to the “theme”, or moral of the story.
Enemy: The hero needs an enemy who wants to stop the hero from achieving their goal. The more powerful and dangerous the enemy the better. And the closer the enemy is to the hero the better — both in terms of relationship and in terms of psychological make-up. The enemy is often the mirror image of the hero where the “flaw” has become the primary driver.
Action: The basic action that drives the story forward needs to be consistent with the hero’s character
Struggle: The hero must try and fail to solve the problem. Repeatedly. The hero learns something from each failure, and modifies the plan, getting closer and closer to dealing with core issue.
Disaster: Before the story ends, the hero needs to fail big-time. What Blake Snyder calls the “All is lost” moment, when the hero is worse off than when they started, and is pretty much ready to give up.
A Happy Ending: The hero overcomes their limitations, reaches the goal, and realizes their full potential.
Both Elliot and Snyder insist that writers figure out how to tell the story in just one or two sentences (the 25-word pitch) before working on any details. Why? Because it focuses the story and helps you figure out if it’s any good — before you get bogged down (for months!) in the details.
Going Hollywood With Your Story
Which brings us to the real challenge of this post. Can you take your big idea for positive social change, turn it into a Hollywood story, and then cram it into a 25-word pitch?
Given that all stories are really about character transformation — personal change — it is not surprising that the Hollywood story components closely fits with the social entrepreneur. Here is how the key story components can match up with a program for social change:
Hero: Your Customer
Goal: What your customer wants
Enemy: Whoever, or whatever, is stopping your customer from getting what they want — the status quo:
Struggle: What your customers learn or get from your product that helps them overcome the old limitations — your product features.
A Happy Ending: The new world order where your customers have transformed themselves using your service.
Is this too crass with the Hollywood ending? Not if you’re promising to change the world for the better.
Too corny with a hero? Not if you’re trying to help people with serious challenges. And not if you’re trying to engender personal responsibility.
Too formulaic? Well yes, it’s a template — a formula. But the final result, the final story, really depends on you and the uniqueness of your idea. The closer it is to your heart, the better it will be.
Okay, let’s fit these story parts into 25-word template for the social entrepreneur. The promise of change in 25 words or less…
A flawed hero [Your Customer]
Urgently needing change [Customer Needs]
Overcomes huge obstacles and powerful enemies [Established Limitations]
And learns how to open the door [Product Feature]
To a happy ending. [Product Benefit]
Writing the 25 words is really just a word game. But if it helps focus your thinking — and spread your idea — it’s probably worth playing.
Bottom-line: If we’re going to change things, we’re going to have to enlist, engage, and enroll people from outside our circles. Stories are a great way to do that.
“The ability of the human face to communicate emotional states via facial expressions is well known… However, recent evidence has revealed that facial expressions of emotion are most accurately recognized when the perceiver and expresser are from the same cultural ingroup.”
“Belonging to social groups serves an important role in shaping our social identities. Nonetheless, research indicates that exclusion by ingroup and outgroup members seems equally aversive… Direct manipulations of essentialist beliefs about ingroups and outgroups (i.e., political affiliations) led to the same results. These results offer a novel demonstration that essentialized ingroup—outgroup distinctions enhance the sting of social exclusion and the positivity of social inclusion.”
Of course this type of social mirroring can get out of hand, and people end up “bostituting” themselves in order to gain acceptance from key group members.
Bostitute: /bos-sti-toot/ v. To seek approval from your superiors by emulating their style, mannerisms or affectations. n. A person who uses such techniques to win favor.
It is interesting to watch how this type of mirroring and social grooming is played out in our online social networks.
Just take a look at the +1’s, likes and retweets in your networks. Are these mechanisms functioning as substitutes for non-verbal communication? Do these virtual FEEs reflecting our desire to belong? Does the pattern of “liking” mirror the social structure of the group? Is it genuine communication? Or is it just bostitution?
Tim Flannery, author of Here on Earth and The Weather Makers, explains why he thinks Darwin’s theory of evolution points to the development cooperative social systems like ant colonies, cockroach agriculture, and human cities — what he calls “intelligent super-organisms”.
Others, like Richard Dawkins, author of The Selfish Gene, see “Survival of the Fittest” as justification for unfettered, and uncaring, competition. Flannery points out that the actual legacy of evolution, the world we live in today, is made up of highly complex, species interdependent, bio-systems. And, that it is social consciousness, with the evolution of ideas and the technology, that is actually driving us forward.
Interview by Allan Gregg. Watch the whole thing, or start at minute 4:12 to see the discussion of evolution as a story of “extraordinary collaboration, cooperation and co-evolution”.
Is fear of the “Dirty Oil” label behind Canada’s tarring of Artist’s European tour? What lengths will the Canadian Government go to ensure that oil from the Alberta Tar Sands is not labelled “dirty”? Watch this video about Canadian artist Franke James, and how a dream opportunity — a 20-city European artshow to educate youth about climate change — faced behind-the-scenes interference by the Canadian Government.