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The Current Transcript for April 3, 2018

Host: Anna Maria Tremonti

STORIES FROM THIS EPISODE

Listen to the full episode

Prologue

[Music: Theme]

SOUNDCLIP

VOICE 1: I wouldn't want anybody to experience the withdrawal system, it will cause you to lie it will cause you to do everything wrong in your life — you know, steal, whatever it is to get this product.

ANNA MARIA TREMONTI: He is part of a class action lawsuit against Purdue the pharmaceutical giant behind OxyContin, the Opioid that has played such a prominent role in the growing addictions of so many Canadians. It appeared that lawsuit was nearing settlement. But a decision last week by a Saskatchewan judge has put it in limbo and more than one critic thinks that's a good thing because they say the expected payout of $20 million wouldn't come close to paying for the damage to human lives or provincial health care systems. We're looking at that issue in just a moment.

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VOICE 1: We need a Disney princess with chronic UTIs and the doctor tells her to always pee after sex and the princess says she's already doing that and the doctor says well that's all the advice I have.

AMT: Ok, let's set aside the fact that Disney princesses don't talk about sex. What you just heard was the voicing of a tweet by a woman who is done with flippant and unhelpful advice on Urinary Tract Infections Canadian women make an estimated 500,000 trips to their doctors every year because of UTIs and even the experts say the diagnostic tests and treatments aren't good enough. We're on that in half an hour. And after that.

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VOICE 1: I can't actually believe that members of the public is actually going to allow children cut their hair.

AMT: So what happens when you give 10-year-olds the scissors and the hair dye and the permission to start in on your tresses? In an hour, how one Canadian man's performance art confronts our adultitarian system and raises questions about why we have so many rules around keeping kids out of economic and political activity and decision making. I'm Anna Maria Tremonti. This is The Current.

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Drug company knew Oxycontin was addictive and lied about it, says plaintiff in class action suit

Guests: Stephen MacGillivray, Matthew Herder

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[Music]

VOICE 1: There's no question that our best strongest pain medicines are the opioids but these are the same drugs that have a reputation for causing addiction and other terrible things. Now in fact the rate of addiction amongst pain patients who are treated by doctors is much less than one per cent. They don’t wear out. They go on working. They do not have serious medical side effects. And so these drugs which I repeat are our best strongest pain medications should be used much more than they are for patients in pain.

AMT: That's how Purdue Pharma, the maker of OxyContin, promoted its drug to Americans in a promotional video back in 1998. Within a year of that video, prescriptions for OxyContin soared by 11 million in the United States. And OxyContin has gone on to become the world's top selling opioid painkiller. The company has faced lawsuits for its alleged role in the U.S. opioid crisis. And, of course, here in Canada, there's an undeniable opioid crisis too. New statistics from the Public Health Agency of Canada show it's gotten worse in recent month. Between January and September of last year, 2,923 people across the country died of opioid-related overdoses, up 45 per cent over the same period the year before. Meanwhile, a decade-long, Canadian class action legal battle against Purdue Pharma Canada hit a snag. Set to pay out $20 million nationwide to patients and provincial health insurers, the lawsuit is in limbo after a Saskatchewan judge refused to approve it last month. Stephen MacGillivray is one of the plaintiffs who took part in the class-action lawsuit. He's in our studio in Sydney, Nova Scotia. Hello Mr. MacGillivray.

STEPHEN MACGILLIVRAY: Hello Anna Maria.

AMT: When did you start using OxyContin?

STEPHEN MACGILLIVRAY: When did I start? About 1997. Probably when it first come out or came around here anyway.

AMT: And what was it for?

STEPHEN MACGILLIVRAY: I had an injury at work. I work for the CBRM, which is the Cape Breton Regional Municipality. I had a firearm hydrant fall on me and shatter my clavicle. I was treated and I went to get something for the pain. The pain was quite high. My doctor told me that there was a pill called OxyContin and he would give me two a day. And that was the start of it.

AMT: What affect, impact did it have on your life?

STEPHEN MACGILLIVRAY: Within the second prescription I was probably addicted. By what I mean the second is by the second month I was probably taking that 60 — two a day x 30. I was probably taking them within the two week period. I just couldn't get enough and the sickness as I was listening to it is just unbelievable. Unfortunately I'm an alcoholic so I know the addiction of alcohol. This has nothing. Alcohol has nothing on this drug as far as the pain and the withdrawal. I can't even describe the withdrawal.

AMT: How long were you addicted to OxyContin?

STEPHEN MACGILLIVRAY: I was addicted... I had to go off island to get Methadone. Methadone basically saved my life. So I was probably addicted for a good eight to 10 years.

AMT: And you weren't on prescription that whole time?

STEPHEN MACGILLIVRAY: No. No I wasn't. Doctors got sick of me. You know I went from doctor to doctor to doctor and then of course I had to go out on the street and buy it. Upwards of anywhere from $200 to $400 a day I would spend on OxyContin.

AMT: What did it do to your life Stephen?

STEPHEN MACGILLIVRAY: I lost my job. Basically I walked away from a job. So when I say I lost my job it's kind of twofold. I walked away from a job. I was so sick I couldn't get to a job. People say to me Stephen you’re so sick, there's so much help out there. The only people that could understand were the people that were on this OxyContin. I lost my family. I ended up getting a criminal record from stealing to get the OxyContin. I became a person that I remember when I went to one of the detoxes and they said "NSF." I couldn't understand that. And they said "No, that's you. No fixed address.” Or NFS excuse me. No fixed address.

AMT: That was never your life before?

STEPHEN MACGILLIVRAY: Oh never. No. I came from good people. You know I consider myself a good person. I excelled in school and sports. You know a pretty decent guy. Great job. And yeah I went from 10 to 0 real quick.

AMT: You were on The Current talking about this issue in May of last year when the Nova Scotia settlement was approved and you said at the time it was a good start. Do you feel differently now?

STEPHEN MACGILLIVRAY: I do. Yeah I do. I always said it wasn't enough. I guess I'm trying to look at it twofold. They probably took what they could get. I do know that Purdue Pharma probably has more money than the Canadian government, so I am not quite sure about that. The $20 million has to go to a lot of people. You have to understand before it even goes to the people that are in frontline it has to go to the governments, all the governments that funded OxyContin, the people that couldn't afford OxyContin. So it's probably going to be quite low by the time it trickles down to the little guys like me.

AMT: Why did you join the lawsuit? Who do you blame for this?

STEPHEN MACGILLIVRAY: Who do I blame? At first I blamed the doctors but when I started finding out about it , you know I really really studied it, and you know Purdue Pharma was going in and they were basically lying to the doctors, telling them that this drug is not addictive, it is not addictive. And you know it's time released. Of course you could crush it, snort it, or you could crush it and you could jacket which is you know you could put it up your arm or you could chew it. So you know that time release went right out the window. But you know Purdue Pharma knew this drug was addictive and they blatantly told people that it was not addictive.

AMT: And so the $20 million figure that the judge in Saskatchewan said; he questioned the math basically. How much would you have gotten out of $20 million personally?

STEPHEN MACGILLIVRAY: That's a great question and actually it was two judges Anna Maria. The first judge in Saskatchewan he said no and then I think they were assuming he was going to say yes because all of the other provinces did say yes — the provinces that were involved. When they went back to him he retired, so they had to set up another appointment with the Saskatchewan Government. So they went back again and the second judge said no. So this is two judges in Saskatchewan. And I can understand because when I was in Nova Scotia watching the court proceedings people come up and told about their sons being killed or their wives being killed or these people ruining their lives and stuff. So I mean it really played on every judge that… But for Saskatchewan I don't know why Saskatchewan. But I kind of applaud them.

AMT: And what would you like to see happen next?

STEPHEN MACGILLIVRAY: Honestly I would like to see it go back. I know they're probably going to bog this down, the paperwork forever and ever. But you know what it was really never about the money for me. I would like to see them say that you know they did wrong. That's the big thing. I don't think we're ever going to see that or hear that.

AMT: Ok. Stephen MacGillivray I'll pick up some of those points that you've raised with our next guest. Thanks for speaking with me today.

STEPHEN MACGILLIVRAY: Great, thank you very much.

AMT: Stephen MacGillivray, one of the plaintiffs in the class action lawsuit against Purdue Pharma Canada. He’s in Sydney, Nova Scotia. He's been clean for 13 years now. The Saskatchewan decision rejecting the proposed settlement with Purdue Canada puts Stephen MacGillvray and other plaintiffs in legal limbo. But some say there are upsides and one of them is a chance to re-open the conversation about whether governments should take legal action against opioid makers. That's something the U.S. has been doing aggressively. In 2007 Purdue and three top executives pleaded guilty to misleading marketing. They admitted to overstating the benefits of opioids and minimizing the risks of addiction. They agreed to pay more than $600 million US in fines and other payments. Some say it's time Canada followed the U.S. example. Matthew Herder is the director of the Health Law Institute at Dalhousie University. He is in our studio in Halifax. Hello.

MATTHEW HERDER: Good morning.

AMT: So what are you thinking as you listen to Stephen MacGillivray and about this decision that the judge has said $20 million needs to be looked at?

MATTHEW HERDER: Well I think it's as you said a very important moment, a powerful moment to reconsider what options are available for someone like Mr. MacGillvray or other members of this class. I don't think anyone wants to suggest that they aren't entitled to and should seek compensation in whatever form they might obtain it. And so while we need to reconsider these options I'm sure there is space for this class action itself to move forward potentially. But I think other actors most notably provincial and territorial governments need to take a very serious look at the full scope of this problem and other options that are on the table or could be on the table.

AMT: Well let's back up a bit because first of all Purdue has never made an admission of liability in this case, correct?

MATTHEW HERDER: That is correct.

AMT: So what had Purdue and the plaintiffs agreed to that the judges had to approve?

MATTHEW HERDER: So they had agreed to essentially a sum of money and a particular set of terms that would essentially make it difficult to pursue other kinds of actions potentially. So outside of this settlement for example it doesn't preclude individual people such as Mr. MacGillivray from taking legal action against physicians. However if they were to do that sort of thing under the terms of the settlement essentially the provinces would have to get involved and in effect sort of prevent that kind of claim from moving forward. So it does close down other kinds of options and basically there is recognition through this agreement if it goes forward that harm has occurred and as a result some compensation should be made available to people within the class without sort of admitting any sort of criminal wrongdoing on the part of the company or companies involved.

AMT: Now the judge in Saskatchewan, who was, actually Regina Court of Queen's Bench Justice Brian Barrington-Foote, rejected the proposed settlement even though Ontario, Quebec, and Nova Scotia had approved it. What were his reasons?

MATTHEW HERDER: So I think there were essentially two main reasons. The judge came to the conclusion that this proposed settlement was not fair, reasonable, or in the best interest of the class as a whole. His main concern I think was that some of the assumptions or calculations that went into coming up with this particular figure and the range of approximately $11,000 to $13,000 being made available to people within the class the assumptions built into that calculation he just didn't find persuasive. So some of the calculations essentially use $20 million, not $18 million. We know $2 million was earmarked for the provinces to deal with their costs. And so there was just basic sort of calculation type errors. It wasn't clear…

AMT: I'll just stop you there...$2 million for the provinces collectively to deal with the costs to health care opioid addiction?

MATTHEW HERDER: Yes so the figure hails into comparison.

AMT: That's not very much, right?

MATTHEW HERDER: Absolutely. And that's one of the reasons why I think we really have to look at other options. So as we know from other kinds of context. In the case of tobacco for example the provinces enacted laws in order to try and recover in a much more significant sense some of the health care costs that have been incurred in dealing with their health related problems of tobacco. It's conceivable that provincial governments if they decide to put the brakes on supporting this class action they could look at that kind of mechanism to try and recover a greater measure of money to deal with the public health crisis.

AMT: Now we've seen jurisdictions in the U.S. suing opioid makers just this week. Arkansas have filed suit against three makers. Is that something Canadian governments can consider?

MATTHEW HERDER: It's important to understand there are some differences between the two jurisdictions much as the public health crisis has similar features or at least we believe it does in terms of outcomes. It's a little bit unclear actually what led to this process in terms of whether marketing practices exactly the same in Canada and that's another reason why I think another type of legal mechanism such as prosecution under the Food and Drugs Act is worthwhile. In the United States so there are different sort of legal tools available. For example misbranding is a federal offense. Ten years ago $600 million was paid in fines by Purdue to the federal government because they were found to have misbranded their products. We don't actually have that as an offence in Canadian law. There is also a strong culture amongst state attorneys general in terms of bringing legal cases against pharmaceutical companies. That's an established sort of set of lawyers that engage in that kind of work and have been doing so for some time and that legal culture is not as robust in Canada and so those differences I think lie behind the relative inaction in Canada. But again because of the decision in March from Saskatchewan I think we have an opportunity to rethink what tools we can take advantage of and what sort of action should be pursued going forward.

AMT: Now I should say we did invite Purdue Pharma Canada to be part of this program and no one was available for an interview. The company provided a written statement that said it is reviewing the Saskatchewan decision considering next steps and then it goes on to say and I'm quoting here: "Purdue Pharma Canada has made no admissions of liability." And then another quote and I'm quoting again here: "Purdue Pharma Canada has always marketed its products in line with the Health Canada approved monograph and in compliance with all relevant rules, regulations, and codes, including the Food and Drugs Act." What you make of that?

MATTHEW HERDER: I think it's sort of a standard press release and I think there is a serious question about the veracity of that claim and the absence of prosecution in Canada by the federal government for a potential violation of the Food and Drugs Act is puzzling, let's say. So we have a fairly strong practice or entrenched tendency at the federal level to try and enforce the Food and Drugs Act through cooperation and there could be good reasons for that in some cases. Otherwise if you try and prosecute in court you might lag way behind the actual harms that are occurring. So there are sometimes reasons to take a more cooperative approach. But when the circumstances warrant it's important to use the full extent of the law. Section 9 of the Food and Drugs Act creates a criminal penalty for engaging in false deceptive or misleading advertising sale of products which seems to have a lot of purchase in this kind of context. And so I'm not sure what conversations have happened at the federal level. I think part of the sort of real value of this moment in the middle of this class action is to have a more public conversation about the different legal mechanisms that might be available. As Mr. MacGillivray said himself this was never really about the money. If it is to some extent about restoring the integrity of our regulatory system thinking about using the tools under the Food and Drugs Act that are available I think is important.

AMT: We did ask Health Canada why it hadn't pursued charges against Purdue under the Food and Drugs Act and no one was available to comment. We did get a statement and I'm going to read that statement" "Here in Canada, had charges against Purdue been pursued under the Food and Drugs Act at the time of the alleged inappropriate marketing practices, the maximum penalty that the courts could have imposed upon conviction was a fine of $5,000 per offence." Their statement goes on to point out that the penalties have been dramatically increased to $5 million per offence but those penalties cannot be applied to situations that arise before the changes in the law. So I want to ask you about all of this but I am going to play a clip for you. This is Alan Cassels. He is a pharmaceutical drug policy researcher at the University of Victoria. Listen to what he says.

SOUNDCLIP

VOICE 1: $20 million just seems so small compared to the damage done. When you look at the class action lawsuits taking place in the U.S. there are hundreds of millions of dollars at stake and you would want a punishment to be a deterrent for future kind of malfeasance. So you would want a much larger sort of settlement and something that could actually make the company think twice before they do this kind of thing again so whether it is going to be deterrent in the future I highly doubt it

AMT: Well there is that. Matthew Herder just one other thing; Ontario's former Health Minister Eric Hoskins actually had called for the government to open a criminal investigation into Purdue. So where do you think the governments should go now?

MATTHEW HERDER: I mean I think it's important to remember that some of these options are not mutually exclusive. So yes the penalties for things that occurred before big changes in the law, in the Food and Drugs Act in 2014, have quite a minor penalty associated with them. Post-2014 actually there is a provision that allows for the penalty to be set in the discretion of the court so to the extent some of these marketing practices have continued post-2014 actually the amount of damages could be much greater. At the same time if provinces were to take a fresh look at doing something like they've done in the tobacco context there is a way in which all of those laws essentially allowed the provincial governments to seek damages for things which occurred in the past. The laws had a retroactive effect and so there isn't a barrier in the law to doing both of those things. It rather requires the political will, the institutional will on the part of provincial and territorial governments as well as the federal drug regulator to pursue those activities together. Finally if the real goal is about helping victims and survivors and their loved ones we should take a look at following what's happened in the context of thalidomide. Now the scope of this problem is much bigger but the federal government in response to the thalidomide tragedy which occurred in the mid-20th century set up a compensation package….

AMT: Right... ok. We're going to have to leave it there. We're out of time. But thank you for your thoughts and your ideas on where the political will needs to go. Thank you.

MATTHEW HERDER: You're most welcome.

AMT: Matthew Herder is director of the Health Law Institute at Dalhousie University. We reached him in Halifax. Matthew hurter a director of the health light Institute at Dalhousie University we reached him in Halifax this knowledge. Let us know what you think. You can tweet us @TheCurrentCBC. Find us on Facebook. Go to our website cbc.ca/thecurrent. How do we look at the opioid crisis and the pharmaceutical companies around that? This is The Current. Stay with us. The news is next and then we're back. I'm Anna Maria Tremonti.

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Diagnosing UTIs is 'a dog's breakfast,' and that's affecting women

Guests: Liz McDonald, Dr. James Malone-Lee

[Music: Theme]

AMT: Can you imagine sitting down for a haircut from a 10-year-old?

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[Sound: Scissors cutting hair sounds]

AMT: In half an hour, we'll hear all about the very real theatrical show, Haircuts by Children, where it takes a little faith to ask for "a little off the top." The show's artistic director will tell us how the haircuts go and the larger point he's trying to make about the role of children in our society. But first, getting better treatment for UTIs.

SOUNDCLIP

VOICE 1: We need a Disney Princess with chronic urinary tract infections who goes to the doctor and the doctor tells her to always pee after sex, and the doctor says she's already doing that, and the doctor says well that's all the advice I have.

AMT: There's Ariel, Aurora, Belle, Jasmine and Snow White, the pantheon of Disney princesses contains multitudes all grappling through various challenges. So why not have one talking about her struggles with urinary tract infections and the doctors who are supposed to treat them? That’s the idea behind one woman's tweet last week, which definitely struck a chord online.

SOUNDCLIP

VOICE 1: Shout out to the multiple doctors who told me the solution was peeing immediately before and after sex. Thanks. I'll let my magic bladder know.

VOICE 2: I've been getting UTIs since I was eight. I'm 20 and every urologist is mystified.

VOICE 3: Have you tried drinking cranberry juice?

VOICE 4: I've been dealing with mine since January. Water, water, water...cranberry, cranberry and pee and more water after sex. Really?

AMT: Urinary Tract Infections are painfully common, especially for women. The Kidney Foundation of Canada estimates that Canadian women make around 500,000 trips to their doctor each year because of UTIs. In fact, women have more than a 50 per cent chance of getting a UTI in their lifetime. The symptoms can be acute and sometimes debilitating: people have difficulty with urination, lower back and pelvic pain, and extreme fatigue. And for some people, the pain returns even after treatment. That's what happened to Liz McDonald, who's been dealing with chronic UTIs for years. She is a Toronto security guard and mother of a two-year-old and she joins me now in our Toronto studio. Hello.

LIZ MCDONALD: Hi thank you so much for having me.

AMT: When did you first start getting UTIs?

LIZ MCDONALD: When I was about 15 I started being sexually active

AMT: And how many have you had since that time?

LIZ MCDONALD: Hundreds probably.

AMT: How old are you?

LIZ MCDONALD: 22.

AMT: Like the worst experience you had with them... do you remember?

LIZ MCDONALD: Probably when I was pregnant which is scary because the doctors told me I could have killed my baby because of them if I didn't treat it properly. But then again I wasn't able to take the normal medication that I usually do if I wasn't pregnant. So that left taking something I've never taken before which is even more scary when you're pregnant and don't want to do anything to hurt your baby.

AMT: And describe what it was like for you with UTIs or what it has been like?

LIZ MCDONALD: Horrible. Always comes on when I'm at work. Can't leave. Doing shift work. Then when I'm done it's too late to even go get treated. So I deal with pure cranberry juice and water until I can actually do something. Sometimes the symptoms go away until the next one. So it just takes up a lot of time and energy and it's aggravating when no one can figure out what your issue is.

AMT: How long do your infections last usually?

LIZ MCDONALD: The worst is like the first two days. If I go on antibiotics I start to feel better about two, three days after starting?

AMT: And antibiotics... is that usually what you get from doctors?

LIZ MCDONALD: Yeah Macrobid.

AMT: Ok. And what kind of advice do they give you?

LIZ MCDONALD: Wear a cotton underwear, pee before and after sex, drink a lot of water.

AMT: What do you think of this advice: "Pee after sex?"

LIZ MCDONALD: I don't always have to pee after sex. It's very annoying.

AMT: And have you had UTIs when you're not sexually active?

LIZ MCDONALD: Yes.

AMT: So this idea that it's always related... not so.

LIZ MCDONALD: No.

AMT: How has this affected your life then?

LIZ MCDONALD: I think I've been in almost every single walk-in clinic in the city once or twice to deal with it and only one person took me seriously and referred me to a urologist. Everyone else just sent me on my way. The urologist was useless. I got a lot of uncomfortable internal ultrasounds and external ultrasounds and no one has any answers.

AMT: And so what do they tell you?

LIZ MCDONALD: That some women are more prone to it than others.

AMT: And that's it?

LIZ MCDONALD: That's it.

AMT: But you've seen multiple doctors for this, not solely general practitioner. You've gone to clinics. And again they just treated as one off kind of thing?

LIZ MCDONALD: Yeah.

AMT: And so what do you do? What do you do next?

LIZ MCDONALD: Well they've slowed down a bit. The last one I got was in December and I haven't gotten one since. I'm hoping that maybe just with time they'll eventually go away. Maybe eventually I might go to a different urologist to get a different opinion, see if there's anything wrong at this stage.

AMT: So that statistic of a 50 per cent chance of getting a UTI in once in a lifetime is a bit — you're clearly off the scales.

LIZ MCDONALD: Clearly.

AMT: And have doctors been able to explain why you might be prone to getting them?

LIZ MCDONALD: Never.

AMT: And so you talk about getting them so often. Can you tell me more about the pain that you go through?

LIZ MCDONALD: I get the painful urination. I get the back pain, like in your lower kidneys, having to go like every 30 seconds which is so inconvenient when you work shift work. You can't just leave to go to the bathroom every five minutes. So yeah it's very uncomfortable.

AMT: Well you're a security guard. Yes. And so you can't... If you've got lower back pain how does that affect your work?

LIZ MCDONALD: You kind of just have to power through it — lots of Advil.

AMT: Ok. And so no one's been able to explain this and you've seen many doctors?

LIZ MCDONALD: Many doctors.

AMT: How frustrating is that? Very frustrating.

LIZ MCDONALD: I really hope that everything would be answered when I went to the urologist but he didn't really seem to care. He just gave me the same thing he told everyone else I guess.

AMT: Do you think it's being treated seriously enough?

LIZ MCDONALD: I'm not sure what else I can expect. If like the main doctor — that's the only thing he deals with — tells me the same thing that everyone else has, maybe I'm starting to go crazy. Maybe I'm just prone to it. No one could really explain it. But then the other part of me is like well maybe there is an issue but he's just not looking deep enough.

AMT: Are you concerned at all about... I mean again you're 22-years-old you've had this many... how do you move forward when you've already had to deal with these infections almost constantly?

LIZ MCDONALD: Now they're like spacing out more. I'm getting one like every three months. So that's not bad. That's bearable. So here's hoping that maybe it will go once every six months, once a year, and eventually just taper off.

AMT: And you usually get antibiotics?

LIZ MCDONALD: Yes always. Well when I can't get to a walk-in clinic I don't take anything and I just wait till I get it. Sometimes just the following week it'll like hold off and then come back like a week later.

AMT: Are you not concerned about taking too many antibiotics?

LIZ MCDONALD: Actually one walk-in doctor told me that she thinks I'm developing a resistance to it so she's going to have to start prescribing me stronger things.

AMT: But you're not really getting any answers.

LIZ MCDONALD: No.

AMT: Ok well maybe I can talk to our next guest a little bit about those of you who can't get answers. Thanks for coming in.

LIZ MCDONALD: Thanks so much.

AMT: That’s Liz McDonald. She gets multiple urinary tract infections a year. She joined us in our Toronto studio. My next guest has spent much of his career treating women with urinary tract infections. But Dr. James Malone-Lee would like to see big changes in the way the medical community handles them. He's the co-author of new research that calls into question both the way UTIs are diagnosed and how they're treated. Dr. Malone-Lee is an emeritus professor of medicine at University College London. He's in our London, England studio. Hello.

DR. JAMES MALONE-LEE: Hello to you. Thanks for inviting me.

AMT: What were you thinking as you listened to Liz McDonald describes her experiences?

DR. JAMES MALONE-LEE: She is infected with a group bugs that we call "persisters." These bugs enter the urinary tract in acute infection and then they borrow into the tissues and then into the cells where they are protected by the cells from some of the immune attack. Now the trouble is that they then hibernate. They become dormant and they don't divide. If a bug doesn't divide then you cannot touch it with an antibiotic. It's a problem. These persister dormant microbes can lie in the urinary tract cells for years and years. From time to time, they wake up, start dividing, burst out of the cell, and distribute themselves through the tissues causing an acute urinary infection and they get treated with a short course of antibiotics which will deal with the acute problem — the dividing microbes that are outside the cells and the tissues — but it will not deal with the problem of the persister microbes.

AMT: Ok, just can't get to them but you know they're there?

DR. JAMES MALONE-LEE: Oh we know they're there. These patients react by increasing the number of bladder lining cells that they shed. They're pouring these cells out trying to get rid of the infection and we can see the bugs inside the cells. And we can see them glued to the surface of the cell. But the trouble is that the bugs can sense that they have been ejected and they're free floating in a dying cell so they mount an escape. And what they do is divide vigorously, so they then burst out of their host cell and then they track down through the tissues again invading new fresh cells so to keep their infection going.

AMT: Why are women more likely to get UTIs in the first place?

DR. JAMES MALONE-LEE: We don't know the answer to that. It's always been suggested because they have a short urethra. And the men are protected by the prosthetic system. I don't think we can claim that is the explanation. And I always declare that I just don't know.

AMT: And when it comes to diagnosing and actually treating them then you just explain the persisters you can't get to it. You have problems though with the diagnostic side of things?

DR. JAMES MALONE-LEE: Diagnosis of urine infection is a dog's breakfast. Most patients presenting to the primary care sector will have their urine tested with a dipstick test and that is grossly insensitive. It is grossly insensitive.

AMT: What is it? What does it do?

DR. JAMES MALONE-LEE: The dipstick test will miss about 70 per cent of all infections. So you go to the doctor, the dipsticks negative, they say you haven't got an infection and there's no justification for that. The sensitivity is so weak that you cannot possibly make a judgement of disease on that evidence.

AMT: Ok keep going.

DR. JAMES MALONE-LEE: The gold standard reference is to send the urine sample to the laboratory where it's cultured. That is the gold standard reference. We have completed a sequence of different studies becoming increasingly meticulous and demonstrated that in the sort of patient that was speaking to you earlier the gold standard culture cannot distinguish that those patients from normal asymptomatic volunteer controls. So it can't distinguish between the normal population and people who've got the disease and yet it's the gold standard reference. So we have a very very serious problem.

AMT: What do you do then to diagnose?

DR. JAMES MALONE-LEE: We went back to 1922 to a method of microscopy developed by Atis and which was the standard method of examining for urine infection throughout the first half of the 20th century and which has never been bettered. And so we use a microscope in the clinic on fresh urine with the patient almost in front of us and we count the inflammatory pus cells in the urine and we use the symptoms and the pus cells to guide us through the process of treatment.

AMT: And if you don't do that are you saying that basically when people go in for tests they don't get... they just don't know that they're being under diagnosed.

DR. JAMES MALONE-LEE: They don't know. I mean the usual experience people will describe is a woman going into the clinic, she's certain she's got a urine infection, the medical staff say no the tests are negative, you haven't got a urine infection. She's right. They're confusing no evidence of disease with another thing which is evidence of no disease. The two are not the same. It's a fundamental philosophical flaw.

AMT: And so how about the treatment? What does your research show about how doctors use antibiotics?

DR. JAMES MALONE-LEE: We get these patients really late. I mean the average in our paper was six and a half years of relentless suffering.

AMT: Six and a half years of urinary tract infections? Like right through?

DR. JAMES MALONE-LEE: Yep. We attempted to treat it this way, we started them on antibiotics and we recorded a reduction in the symptoms and also a reduction in the white blood inflammatory cell signal in the urine. We treated them until all the symptoms are gone and all the white cells are gone, and then we stopped treatment and in most cases they relapse quite quickly and so we developed a technique of stopping and starting by the process of trial and error. And I regret that it takes us on average about a year to clear these women of the infection that they will be on and anti-microbial for about a year.

AMT: And that's got its own complications I'm guessing?

DR. JAMES MALONE-LEE: Yeah, it's big worry to us. But there was a big development for us a few years ago when I was getting the data from one of my PhD students and she was demonstrating that culture was really giving us wrong information. So I decided to ban it and I forbade my staff to make treatment decisions based on the culture so that they were not looking at the sensitivity reports that were coming back to the laboratory and as a result of that we found that we can manage our patients on very simple elderly narrow spectrum first generation antibiotics. In other words the culture data was telling us that these people were infected with bugs that were resistant to this that and the other and in fact it wasn't true. We found that we can manage them very successfully just with very simple old fashioned remedies and I'm very very encouraged by that.

AMT: And so the patients who come to you and who have had infections for as long as six and a half years do the infections disappear then after your treatment?

DR. JAMES MALONE-LEE: Well it's a big battle and some of the patients we clear all evidence of infection and they can go off and lead normal lives. Although we supply them with some antibiotics so that they self-medicate on the hint of any trouble so they're just not allowed to develop it again. Others we can control but we just can't get them off the antibiotics. And then there are very very rare group of patients who are a constant worry to us and it's a big battle.

DR. JAMES MALONE-LEE: James Malone thank you for taking us through this. That's my pleasure. Thank you for having.

AMT: Dr. James Malone-Lee is an emeritus professor of medicine at University College London. We reached him in London, England. He is the co-author of a new paper in the International Urogynecology Journal. My next guest is also grappling with how to treat what is a common but complex illness. Dr. J. Curtis Nickel is an urologist and professor in the Department of Urology at Queen's University in Kingston, Ontario. He is also the Canada Research Chair in Urologic Pain and Inflammation. We have reached him at Kingston General Hospital this morning. Hello.

DR. J. CURTIS NICKEL: Hello Anna Maria.

AMT: So you've been listening to both our guests. How much does Liz McDonald's story resonate with you?

DR. J. CURTIS NICKEL: For 35 years as you said I've been grappling with understanding and managing women and men with recurrent urinary tract infections and in fact have been very involved in the research. In fact I was a member of the original research team 30 years ago who proposed the hypothesis that your previous speaker elucidated and we have spent literally millions of dollars and thousands of patients in clinical trials to examine that hypothesis or theory.

AMT: The hypothesis that…

DR. J. CURTIS NICKEL: The hypothesis that bacteria persist we introduce the term “bacterial biofilms to urinary tract infections” or “bacterial pods or factories” and we've not been able to show that ever in patients with recurrent urinary tract infections young healthy patients. We've only been able to show it in patients with diseased urinary tract or the geriatric elderly patient. For patients like your guest she has recurrent urinary tract infections rather than persistence. And what we would find when we examine the genetics of the bacteria is it each time she gets an infection it will be different bacteria not one that's been persisting in the urinary tract for years or decades as we initially proposed and proven not to be a good idea.

AMT: Ok so you've raised a problem there. There's a disagreement there. What about the actual diagnosis? What do you think of what he's saying?

DR. J. CURTIS NICKEL: Well I totally agree with the previous speaker. The dipstick, the culture technique, and even his microscopy technique from the 1920s that I continue to use as well to look at inflammatory cells is you know century old technology that misses not as he said 40 to 50 per cent of the bacteria but misses 99 per cent of the bacteria. We now use state of the art next generation molecular biological techniques, myself and my colleagues worldwide, to try and understand what's going on with bacteria in the bladder and what we've found is that the bladder is not a sterile organ as we were once taught in medical school. But it's actually a veritable microbial jungle. There's a bacterial population in normal patients and in patients with disease that interact with microbial populations in the vagina and in the gut, the lower gastrointestinal track, and that promotes health and disease. This fine interaction and balance between the ecology of the bacteria in the bladder, the urethra, the vagina, and the lower bowel.

AMT: So how much closer does that information get you to effective treatment?

DR. J. CURTIS NICKEL: Well it helps us understand what is happening with patients such as the young lady who told us her story. It is a very common story. For some reason it could be genetic, it could be physiological, it could be neuroendocrine, and it could be anatomical although she's likely had that ruled out now. She has a predisposition to develop recurrent urinary tract infections and with each infection it causes problems not only to her ecology of the bladder but also her normal innate bladder defences. And each time she's put on antibiotics she develops a disharmony of the bacterial populations in her bladder, urethra, vagina, and gut. And this disharmony are or what we call dysbiosis, sets her up for future illness, including recurrent urinary tract infections.

AMT: Well women often express frustration that their pain and symptoms are not taken seriously. Is there a gender issue involved here?

DR. J. CURTIS NICKEL: Not really. But it is a frustration on the behalf of physicians who really believe they only have one weapon in their armetarium and that's antibiotics. And we've been taught to try and prevent the use of indiscriminate antibiotics because we don't want to put patients on antibiotics for a year. That's sort of like carpet bombing during a war where you figure you're winning the battle but you're actually losing the war. And so physicians understand long term antibiotics increase gastrointestinal problems, allergies, cardiovascular disease, and psychological well-being. And yes a year of antibiotics predisposes you to future cancer. These things we know now so we try and avoid it. So doctors don't want to give a lot of antibiotics yet antibiotics which are poisoning to bacteria actually you know have benefits they're useful and can be even lifesaving. So we have to use them strategically and we do have ways to use strategically plus research recently has shown us all sorts of natural approaches that you know the patient that you just talked to should be using over the last decade but unfortunately she hasn't been given the proper advice.

AMT: Natural such as...

DR. J. CURTIS NICKEL: Well to start with she should not be on antibiotics for long-term because all sorts of problems can occur even with the antibiotics that she's been on like Macrobid can predispose you to hepatitis, neurologic injury, and permanent lung injury.

AMT: So what are the options then?

DR. J. CURTIS NICKEL: The options... One is she's drinking cranberry juice. Well unfortunately she would have to drink two litres a day to be able to get enough [unintelligible] or what we call “packs” to be able to make a difference. So what she should look for is cranberry extract that has a good concentration of this and this packs a supplement. She should be considering probiotics either lactobacilli like different types of yogurt or even vaginal douches for lactobacilli. There's a product called D-mannose which is an eyes and mirror of a molecule that bacteria used to attach to the bladder wall. And when you take this natural substance it actually blocks the bacteria from adhering. Diet is extremely important; environment, reduction in stress and anxiety all reduce your propensity for this. We're working now on vaccines we've been actually working on vaccines now for 25 years and the bacteria continue to outsmart us. But we think we have an opportunity now using sort of more modern vaccine technology to be able to develop a mucosal vaccine. In other words not a systemic vaccine but mucosal vaccine that will only work on the bladder mucosa…

AMT: Ok we're really out of time. We have to go. Just in like a phrase how long before that vaccine is available do you think?

DR. J. CURTIS NICKEL: Well the vaccine is being used in Europe in clinical trials; New Zealand...

AMT: Ok so in Canada?

DR. J. CURTIS NICKEL: ...and I've applied to Health Canada to be able to get early experience in Canada in the Kingston area for this vaccine.

AMT: OK we have to leave it there Curtis Nickel. We're out of time. Thank you.

DR. J. CURTIS NICKEL: Ok. Bye now.

AMT: Dr. J. Curtis Nickel is an urologist and professor in the Department of Urology at Queen's University in Kingston, Ontario, that’s where he joined us. This is The Current.

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Would you let a 10-year-old cut your hair? Artist argues we should give kids more control

Guest: Darren O'Donnell

SOUNDCLIP

VOICE 1: I can't actually believe that members of the public is actually going to allow children cut their hair.

VOICE 2: Yeah I am actually looking forward to it, but it's a little bit scary.

VOICE 3: Freaky hairstyle.

VOICE 4: I believe that you made an appointment for the project Haircuts by Children.

VOICE 5: We're looking forward to meeting you and cutting your hair.

AMT: Those are 10-year-old. They are taking part in a theatrical performance, called Haircuts by Children. But make no mistake the haircuts they give are very real. As part of the show, a group of 10-year-olds are given a little bit of training in how to cut hair. Then, willing adults take a seat and let those kids have at their hair. There are a couple of things about this scenario that might give you pause: First, the idea of kids wielding scissors right by your eyes and ears. And second, what kind of haircut you might walk away with. But that of course is part of the idea behind Haircuts by Children. Darren O'Donnell is the artistic director of the Toronto-based performance group Mammalian Diving Reflex. For more than a decade, he's been creating theatre works, like this one, that explore the role of children in society. And now he has a book out, called, Haircuts by Children and Other Evidence for a New Social Contract. Darren O'Donnell joins us from Austin, Texas today. Hello.

DARREN O'DONNELL: Hey Anna Maria, how are you doing?

AMT: I'm well and I'm really curious. You know even the first kid we heard in that tape off the top can't believe she's going to be allowed to cut the hair of grownups.

DARREN O'DONNELL: Yeah yeah.

AMT: [Laughs]

DARREN O'DONNELL: Well when we mention it to them it's like we're offering them to dive into a stream filled with gold. It's unbelievable how surprised they are that they get to do this.

AMT: What made you think it would be a good idea?

DARREN O'DONNELL: Well because it's so crazy and it just sort of seemed like it would be a fun thing to try, kind of an anarchic thing to try. But it was really the serious way in which they took it that really took me aback and the interesting relationship that happened between a client and their stylist and the kind of relationship that they would develop and how they would reach across the intergenerational divide to make a lovely moment together and watching that led to much more work with young people and different understanding of the relationship between adults and children.

AMT: Oh and we'll get to that in a minute. But let's talk a little bit more about those haircuts. What do you do to get them ready to cut hair?

DARREN O'DONNELL: Well we train them; a couple things. We first contextualize the projects so that they understand what they're doing is performance and how it sticks in the world of performance and where it is within the history of performance. Then we discuss children's rights and play a little game called what kids can't do. We get them to make a list of all the things that they cannot do because they are young people and then we instigate a debate amongst them about which are fair and which are not fair: The right to vote, the right to smoke cigarettes, they like talk about gambling as one of the things and so we have a discussion about that. And then we spend about three days, maybe two hours each day, teaching them just the basics of haircutting just so that they're confident but so that they still retain their creativity and are able to do crazy haircuts. So it's only so that they're confident to not so that they're particularly skilled.

AMT: What have you heard from the kids about that whole experience?

DARREN O'DONNELL: Well they love it. I mean like I said they can't believe that this is an offer. We have many many projects with children and often we will mention this other haircuts and they all just want to abandon the project that we're currently working on and they'll demand that we work on haircuts. Even older teenagers still think that's the best project in the world.

AMT: How young are the kids cutting hair?

DARREN O'DONNELL: We work with 10-year-olds generally for that one.

AMT: That's great. What do adults tell you about what it was like to get their haircut by a 10-year-old?

DARREN O'DONNELL: Well yeah that was one of the most interesting things was how moving it is, how moving it is to see this relationship. And it really is to me about the relationship and the work that I make is always about the relations as the material in the practice, in the artistic practice. So watching the relationship between young people, how the kids and the adults have to reach across this very awkward moment and across this divide in this. And you know when you're sitting in the barber chair with a barber who you trust sometimes it can be a bit awkward but when it's in that situation there's really an effort made by the adults to reach across that divide and have an interesting conversation with the young people and experiencing it as the person getting the haircut it can be quite moving and then really watching it as a performance is kind of amazing.

AMT: How do the haircuts turn out?

DARREN O'DONNELL: Well you know they range [laughs] in their quality. Some of them are what we would normally consider to be terrible haircuts. They're very good at creating what I call the Odessa Steps sequence where they cut steps into people's hair because they want to cut the straight lines. That's very nice sometimes. Sometimes the bangs are cut impeccably straight to a ridiculous degree. But we've had instances where this Rebecca Campbell who's a Canadian musician, she had her haircut in one of the first performances and the next day she was at the airport and a stranger came up to her and asked her where she got her haircut because they liked her haircut so much. So their good enough to be sometimes you know salon quality but then sometimes they're just ridiculous. And we train them for both. We offer techniques in making designs in people's hair so they get that. There's lots of colored spray for those who are a little bit reluctant to get very much chopped but they still want to participate, there's that there so it can range. But sometimes like I said it's quality very good. And then sometimes it's pure lunacy.

AMT: Well in fact the colour. We've got one video. If you go to our website we posted a video from one of the performances and you can see some pretty wild hairdos. But there's a real effort to put some blue, nice beautiful dark royal blue, in several people's hair. They're real sports. And our listeners can find that video at cbc.ca/thecurrent. It's great.

DARREN O'DONNELL: It's not just cutting the hair we just let them run the whole salon. So they're at the front desk dealing with the bookings and they're sweeping up and often they have to take people outside to colour them up but they get quite enthusiastic about the whole range of activities in the salon.

AMT: In fact some of the adults are more surprised at the fact that they're doing the administration [laughs].

DARREN O'DONNELL: Right. Yeah yeah.

AMT: Darren Haircuts by Children has been performed all over the world. Why do you think it's resonated so much with audiences?

DARREN O'DONNELL: Yeah it's really a surprising one, completely out of the blue. I had no idea that it would have this kind of traction. Still now, 12 years later continuing to roll. I think it's about this relationship between adults and children and the complete flip of this hierarchy in a really really decisive and shocking way. I think it manages to do that and be super playful so it's talking about the rights of children while at the same time having a really really good time. And if you experience it in the salon itself it's kind of a mix of like a family holiday dinner where the kids, all the cousins are together and running rampant throughout the house. It mixes that with this more commercial environment and that's a very unusual feeling. And I think in our society anyway there's very few instances where there's a commercial kind of situation and young people together and adults who don't know the children getting along and having a conversation we just have sort of relegated children and protected them in such unusually, maybe oppressive ways I think is a better way to describe it. And so you get to experience a very different kind of world with the work.

AMT: Well we wanted to look at your work from the kids’ point of view as well so we went to one of your former collaborators. This is a clip of 14- year-old Emma O'Brien describing what it was like working with you creating a performance at the Art Gallery of Ontario in Toronto.

SOUNDCLIP

VOICE 1: Darren came over for dinner and he had this idea for his next project. The idea was like we would lie on our back and he would kind of like put water, like drip water on us or spray us with water, then they put pedals on with your eyes closed kind of like meditation. Then after we did that we gave him some feedback and was like, “Yeah, it’s ok. You know it's pretty cool. Yeah I like it. We like it.” Then he went upstairs, “Ok I'm going to go to the washroom.” Then he came back downstairs and he brought down nail polish. And you know he was like “I am going to paint my nails.’ And then Willow was like “I want to help.” Isabelle’s like “I want to help too.” And then I went upstairs and got like my mom's makeup and so we just started going all out and we just started doing his makeup and then he decided, “Instead of this meditation thing I'm going to do this, like makeup by children.” And so then we did it at the AGO. It was pretty fun. They got face paint and like Darren's face was like blue. And my dad's face was purple and black. And the kids are just like kind of getting all crazy putting like glitter and everything. It was really neat to see everybody doing something that I can help create and then see Darren take it seriously and actually you know put it out there. It was really cool because I would never think that like my idea at the age I was could be something that multiple people in Toronto could be doing.

AMT: So that's 14-year-old Emma O'Brien. What sticks out for you about what she has to say there Darren?

DARREN O'DONNELL: Well I'm glad that you recognized that it was following her impulses and her younger sister Willow's impulses that — I mean we tried this meditation thing. In fact that meditation thing continues. It's about to happen in Rotterdam actually in a flower shop where we're going to be working with a bunch of kids to do something with meditation; flowers on their remembrance day. So that project still remains alive. But it was seeing that hit the wall with those guys, they weren't interested in that. So ok well what else can we do? The first instance of haircuts was in response to a kid who came at me with a pair of scissors. And so all the work has been like that has been paying attention to what young people are interested in and trying to find frameworks for that to be expressed artistically.

AMT: You can hear the enthusiasm in her voice when she talks about doing your makeup. What's your secret to making that connection with kids?

DARREN O'DONNELL: It's just taking them seriously you know and not talking down to them and understanding that their intelligence is as valid as anybody else's intelligence and that there's things that they know about the world that we've forgotten or that they're able to engage with the world in a way that we for whatever reason or self-consciousness we are unable to engage with the world in that way. The way they can follow playful impulse, and even there even the boredom I think is an interesting capacity, their intolerance for boredom and their inability to sit still. I mean all of those things I view as positive things that are not liabilities. They’re positive things that I think that adults could do with a lot more of. I can't imagine a young person putting up with the amount of e-mails that we have in our inboxes, you know like who could handle that? You know it’s a human rights infraction that we have to deal with all of this thing and just the way that young people will just walk away from those instances and have no interest in participating in them and have a temper tantrum and I think that adults should be permitted to have a few more temper tantrums about you know the situation that we often find ourselves in.

AMT: Do you have kids?

DARREN O'DONNELL: No I don't actually [laughs].

AMT: Maybe that's why laughs].

DARREN O'DONNELL: Well yeah in the last 12 years I've collaborated with thousands of them and I really enjoy collaborating with them. I don't want a child because I don't want to have I think the relationship that a parent must have. Partly the way you're forced into this relationship through I mean I think the threat of the intervention of the state all of the time, the way you're forced to send them to school. There's many things that a parent I think loses a lot of their own personal autonomy when they have a child because the child is such a contested being. Their battles are waged on the bodies of children and so being a parent you're going to be sucked into that. I mean it's enough working with them and to be a parent I just think that that would be too much for me.

AMT: Well I want to ask you about that because Emma's parents are friends and big supporters of your work. Do you ever get resistance from the adults in children's lives when you set out to do the work you're doing?

DARREN O'DONNELL: You know it's interesting. I've never had any kind of resistance from parents. The resistance tends to come from what you might call the gatekeepers and most typically those gatekeepers that give us the most trouble will be the schools that we often have to work with, accessing children, especially a diversity of children, a wide range of children, going to schools as collaborators is often the easiest if not the only way to do that. And so sometimes the teachers or the head teachers, the principals, the role that they're in where they have to sort of act as the most paranoid parent because they have to anticipate any kind of you know problems. So it's a pretty low bar or actually pretty high bar that they place in front of us. We have one project called the Children's Choice Awards where we drag a jury of children to see all the shows and in a given festival like an international performing arts festival like say Luminato or PuSh in Vancouver which we did actually in Vancouver. We take the young people to see that and you know the young people are prepared for almost anything and very little content that they can't handle. I mean we shield them from you know really really overt sexuality and particularly violence I'm uncomfortable with but other than that they're good to go. But often the schools will really want to vet things carefully and a few swear words might get a show vetoed. And you know the kids are using swear words in the playground all of the time and it's a little disingenuous to protect them from that. So it's often those kinds of individuals who give us the most pushback.

AMT: You argue that children are unfairly excluded from many areas of social and political life. Where would you like to see them included more?

DARREN O'DONNELL: Well I mean I look to the UN Convention on the Rights of the child which is a document that was ratified in 1989. It's now been ratified by every country but the U.S. And it's got a lot of articles in there that I think that if respected there would be a big shift in our relationship to children. We'd have to really adapt to their presence. Particularly Article 12 where they talk about that they should have the right to express themselves in all matters affecting them. And I think all matters affecting them. There's a lot of matters that affect them, the health care system, the education system, the entertainment industry, the entire Internet, all of these things affect them and they have very little agency to affect any of that back. They have very few forums for them to talk back against that in a way where they have some traction. And so what I'm proposing in my own life and with my company and my own artistic practice as well within this book is that I'd like to see them brought in as much as possible into the world of work which might seem strange, which might seem worth talking about child labour. But I'm talking about the fact that they are already are doing a lot of work, they're certainly labouring a lot for Mark Zuckerberg and the folks on Snapchat, they're doing a lot of labour there. And so I'd like to see the labour that they're doing now I'd like to see that acknowledged and remunerated. I'd like to see them paid for that work that they're doing now. Somehow being shared some of the value that they're producing through all of their activities that they're doing. And then I would like to see them brought in work environments where it's safe and where it adds to their education. I'm proposing that the cultural sector in particular and I would include the CBC and the cultural sector for sure; I would like to see Emma O'Brien herself have her own radio program. Why doesn't a 14-year-old have a program on CBC? And I think bringing them into that environment where it adds to their education, where it fortifies them; it strengthens them I think that they would gain a lot from that and the research around children and work shows that they actually enjoy working. They like the control of the value that they produce. They like to have a little money. And they like to have the respect that people get who work. And so the world of work is where I'd like to see some kind of movement around the inclusion of children much more. I think that's a good place to start. And I think our industry is a great place to start it.

AMT: Your argument is timely in light of the activism we're seeing from young people in the U.S. around gun control and I'm curious to hear what you think of those teens like Emma Gonzales. She's in her late teens but even we saw Naomi Wadler, the 11-year-old, fifth grader, speaking in the March On Our Lives rally and the big rally that was you know all over the United States, parts of Canada, part of the Never Again movement. What do you think of those kids and taking up the causes? Why don't we see more of this?

DARREN O'DONNELL: I mean I don't know why we don't see more. Maybe this is the beginning of it. I mean I think that's a perfect example. I'm glad you brought that up. It's because they are young people that they're being taken seriously in this. I mean I think that this is a sea change in the gun control discussion here. And I'm no expert on this kind of stuff but it really looks like because they're young people they're able to galvanize a different kind of apolitical response to it. I mean I know Emma's being attacked and there's memes that are being created that are distorting what she's saying. So there's definitely that's going on. But I think that they're able to rise a little bit above a partisan discussion. And I think that's the other thing that you know with young people that we’re able to as adults in their presence drop some of our preconceived prejudices about each other and in their presence we try to behave better and I think that their presence is very important and I think that's a great example and I'm happy to see it and I think that this bodes well for the future of young people's participation. And this to me seems like it might be a start of a different kind of understanding of how the kind of intelligence that they bring and the role that they can play as young people.

AMT: You know there's sometimes a tendency to idealize children and think of them as innocent and pure. But we all know they can be mean, unselfish, badly behaved. I mean if we look at the gun thing we know that Dylann Roof's sister showed up at her school with a gun and said she hoped, like you know said all sorts of provocative things against the other students. Is there a risk we're idealizing childhood too much?

DARREN O'DONNELL: Well I mean I'm not suggesting that we should give them total control because they're human just like the rest of us and they're flawed. But what I'm talking about more is to sort of drop the binary, the binary adult child, and understand there are children with you know completely you know amazing capacities and who are very progressive in their thinking and there are adults that are that way but then they're adults and children who are not that way and are not so nice. But I think it's the binary between adult and children. There are some children who are completely competent and then there are some adults who need to be taken care of like they are a baby for their entire lives. And so this binary of adult child I think it's one that is again is socially constructed and it's something that historically what a child has always been in flux. And I think we're seeing it in flux now again. And we have a period of treating them like they're quite precious and defending them against any sort of safety and I think that that's proven to be not so great. It's not so great for their resilience. And I think now we have to accept that they are competent and we shouldn't be thinking in terms of adult and child. That's not where the differences are. That's not the binary that we should be examining. We should be trying to dissolve that.

AMT: What do you say to people who say let kids be kids there's plenty of time to work can do advocacy when they're older?

DARREN O'DONNELL: Well but many kids want to do that kind of stuff. So if the child is interested in working for a bit of cash and is able to do it and we're able to do that in a way that protects them and makes it so that it doesn't interfere with their education and things like that then I think that if they want then that's what a kid is. You know let kids be kids. And if the child is looking for a job and wants to get a job at age eight then let that kid be a kid and get to work.

AMT: Be on the paper route which was probably defunct anyway now.

DARREN O'DONNELL: Yeah yeah I'm sure. Yeah.

AMT: But how do you protect vulnerable kids in that scenario because then we're talking first world kids here. And the people that you are coming in contact with are you know progressive parents. You know they can do that. Not every kid can do that. Some kids... there's no breakfast for them in the morning. They barely have clothes to put on to go to school. What about those kids? What about the kids in war zones?

DARREN O'DONNELL: Well sure. I'm not talking about everybody everywhere. It's a very limited case that I'm talking about which is I would say probably Western slash first world that kind of situation. But I also think that it's important to recognize in other situations that families need children to work sometimes. And in the literature that I've read about this that is not always a terrible thing. It’s almost discriminatory to assume that cultures or countries or situations, societies in which children are having to work to put some food on the table for their family that those children are being exploited. I think that's not a great way to look. It's a bit of an application of a kind of Western ideal of what a family or what a child is supposed to be and applying that in other places. It might not be accurate. And the children might be actually contributing in a way that is actually healthy for them.

AMT: Well again maybe if we let the kids sit at the peace table there wouldn't be war zones [laughs].

DARREN O'DONNELL: Well yeah exactly.

AMT: Maybe we should let them be more involved in some big decisions given that the adults keep messing things up.

DARREN O'DONNELL: And in terms of their vulnerability I mean I think the question is not about children vulnerability it's about everybody. And the understanding that what we understand is as a competent person tends not to be a person who's particularly vulnerable, the ideal person in kind of the Western political philosophy is like the liberal subject is somebody who is competent, who brings their labor to the market, who exchanges that rationally. But that's actually not what people are. People are vulnerable. I think that the children and the child is actually much more of a universal subject and we're all children. When thinking about that binary between adults and children I think it's the adult side of the equation that we need to get rid of and just admit that we're all vulnerable, that we're all just a moment away from being bedridden or being handicapped or being you know hurt in a way that takes us out of the game and that's always there. And if we understand children as the universal subject and not adults as the universal subject then we make a world that's much more kind to each other. If we design the city for children then the city will be good for all of us.

AMT: So you've been doing this work with children for more than a decade now. Personally what has it given you?

DARREN O'DONNELL: Well it's really changed my work and my company. You know I have work that I do with adults for adults that's very adult-oriented kind of career. But this is children stuff is really sort of taken over and it's just led to an understanding of the world very differently so that when I'm out in the world young people look different to me than they did before. They are people that are my friends whether I know them or not. And this is particularly the case with teenagers because I do a lot of work now with teenagers because the kids in Toronto that I've been working with since 2006 now they're in their early 20s but I went with them through their teen years. And so just the threat of teenagers or the insecurity that one might feel amongst teenagers, the fear of being judged, all of that stuff, I feel like I'm a better less vulnerable person by admitting the vulnerabilities that I have with so much contact with young people.

AMT: It's really fascinating to hear you talk and to hear your ideas; lots to think about. Thanks for your work and thanks for making us think.

DARREN O'DONNELL: Great. Thanks a lot. It was great talking to you Anna Maria.

AMT: Darren O'Donnell is the artistic director of Mammalian Diving Reflex, a Toronto-based performance group. His new book is Haircuts by Children and Other Evidence for a New Social Contract. We reached him in Austin, Texas. What do you think? Do we need a new social contract? Is it time for our society to rethink its adultitarianism? Let us know you can tweet us @TheCurrentCBC. Follow us on Facebook. Go to our website cbc.ca/thecurrent and click on the contact link. That's our program for today. Stay tuned to Radio One for Q. You'll hear part of a special concert recorded on Juno Weekend in Vancouver featuring five emerging songwriters. They're calling it Q: The Next Generation. And remember you can always take The Current with you to go on the CBC Radio app. It's free from the App Store or Google Play. After hearing all about Haircuts by Children, we’ve got some adult music, performed by children to leave you with. Back in the 1970s, Langley, B.C. had a music teacher named Hans Fenger who was tasked with teaching kids to sing, but says he didn't know much about children's music. So, he led the kids in renditions of pop songs by The Beach Boys, The Beatles, and more. Recordings of the sessions resurfaced in the early 2000s, and became a surprise cult hit. In fact, there was a new vinyl release of the Langley Schools Music Project just last month. The album is called, Innocence and Despair. And we’re going to leave you with some of that. This is B.C. school kids, in a Langley, B.C. gymnasium, performing David Bowie's Space Oddity. I'm Anna Maria Tremonti. Thanks for listening to The Current.

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April 3, 2018 Full Episode Transcript

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