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The Current Transcript for May 21, 2018

Host: Gillian Findlay

STORIES FROM THIS EPISODE

Listen to the full episode

Prologue

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VOICE: I think the time has come to reconsider. Lyme disease is the only infection I know of for which there is an effective vaccine, but it's not available to the public.

GILLIAN FINDLAY: That's Dr. Allan Steere. He's the scientist credited with discovering and naming Lyme disease in the 1970s. Since then the tick-borne illness has been spreading like wildfire. More and more Canadians are diagnosed every year and Steere is not the only person wondering why we're not all getting that Lyme vaccine. It still exists, so first up today, why it's no longer being used, as well as how to protect yourself as the 2018 Lyme season begins. Also today, if you see something, you have to say something. That's what Shannon O'Hara Bulzone believed, especially when she saw racist posts on Facebook.

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VOICE: I've reported pages like, this is hate speech, like you can't say that here and it didn't come down. And I was like really, like are you kidding me?

GF: Racist comments that don't get deleted, other comments that disappear almost immediately, sometimes with no explanation. When it comes to moderating content on social media sites, who decides? We'll dive into the topic of digital bias, in half an hour. And after that, give me a beat.

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Clip of beat boxing.

GF: Beatboxing is a growing new musical style. Sounds and rhythms produced by musicians using only their mouths. The genre has caught the attention of speech therapists who in beatboxing hear more than just a great groove, they hear potential for helping kids with speech impediments. We'll hear all about it in an hour. I'm Gillian Findlay sitting in for Anna Maria Tremonti and this is The Current.

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A vaccine for Lyme disease was shelved years ago, is it time to bring it back?

Guests: Sam Telford, Tara Moriarty

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VOICE: The safe way to remove ticks is to take your tweezers and you want to go as close to the skin as possible and you want to hold onto to your tick and you're going to pull straight up. Slowly, steadily, you don't want to twist, you don't want to jerk, you just want very steadily to hold onto your tick and pull up.

GF: It is a nasty procedure, but one the Canadians need to get more familiar with. That was the University of Manitoba's tick expert Kateryn Rochon demonstrating how to properly remove a tick. She'd embedded that one in her own arm. Warming temperatures are driving blacklegged ticks into more parts of Canada and they're bringing Lyme disease with them. About 20 per cent of the bugs carry the bacteria that causes Lyme disease, and experts say 2018 will likely see a record number of Canadians getting sick. Nova Scotia has the highest per capita rate of confirmed Lyme disease cases and Lunenburg county on the south shore has been particularly hard hit. That's where Jim Rosbe lives. He's had Lyme disease twice and he's not alone.

VOICE: In our community I would guess, at least a third of the people have had it. One ended up in organ failure. Grandchildren visiting definitely makes me nervous. With climate change and Canadians and Lyme disease areas, something more broad has to be provided in terms of support, research and awareness.

GF: Last year the Federal Government announced four million dollars for research into Lyme disease. Jim Rosbe thinks the focus should be developing a vaccine.

VOICE: I heard of a person who didn't live, who lives fairly near us who after a year of progressively worsening symptoms, it was finally his veterinarian who said, "Gee, you're exhibiting symptoms that horses exhibit." And horses can get a vaccine. Within the media there's a lot of attention and you know increasing visibility of Lyme disease. Four million doesn't sound like very much, but I would put it all in vaccine.

GF: While there is indeed a Lyme disease vaccine available for dogs and horses, humans wanting to get vaccinated are out of luck. In the 1990s there was a vaccine called LYMErix, but it was shelved after a couple of years, in part over concerns about side effects. Sam Telford is a tick expert and was part of the original research team that developed the LYMErix vaccine. Now he wants to bring it back. He's a Professor of Infectious diseases and Global Health at the Cummings School of Veterinary Medicine at Tufts University. And he joins me today from Boston. Hello Professor Telford.

SAM TELFORD: Good morning.

GF: Why would you want to resurrect a vaccine that was taken off the market over fears of side effects?

ST: Those fears of side effects, that was not the reason the vaccine was taken off the market. The vaccine was taken off the market because the manufacturer was not making enough money on it and in the face of class action lawsuits that alleged harm from the vaccine, but had never been proven. As you know lawyers can make something out of anything. And so and the other thing is that, perhaps there were side effects for some people, but every vaccine has side effects. And so it was removed at a time when Lyme disease was not very common. It was restricted to a certain number of states in coastal New England and the mid-Atlantic and the upper Midwest and the market wasn't there and the company just said, well you know in the face of all of this why should we even persist. Let's just drop this product.

GF: Well tell me about the product. Tell me about the vaccine. Was it effective?

ST: The vaccine was very effective for a bacterial vaccine. Anywhere from 50 to 75 per cent efficacy, depending on how many boosts people got. And the reason for this efficacy is based upon the mode of action, the unique mode of action of the vaccine, which I and Erol Fikrig at Yale, discovered back in 1991. Which is, unlike most vaccines which rely upon the memory of the body once they see the vaccine, the dead portion of measles virus for example, when someone gets infected that memory kicks in and antibody and cellular immunity kicks in and wipes it out from the body. Whereas with Lyme disease, what happens is that the antibody is against the protein that is found only on the bacteria when it's within the tick. And so when the tick starts feeding, that blood starts coming in with the antibody and kills the bacterium before it has a chance to get out. So one doesn't even get infected to stimulate a memory response.

GF: So it was effective, but there were side effects. Some people did complain about arthritis and joint pain. What ultimately happened to LYMErix then?

ST: LYMErix was simply withdrawn from the market and the registration was returned to the FDA. And it's been sitting in the freezer ever since.

GF: And this all happened at a time when there was quite a bit of public concern about vaccines, right. This was at around the time when there was a now discredited study that had linked certain vaccines to autism. Right?

ST: Yes. The anti-vaccine movement had started. And not only that, there was a vaccine introduced at the time, which did indeed cause harm. That was a rotavirus vaccine and it caused intussusception or gut issues in children who received and that had to be withdrawn from the market for safety reasons. So it was a confluence of factors: the anti-vaccine movement, the rotavirus vaccine, the fact that the company wasn't making a lot of money, the fact that activists seized upon what they believed were side effects and instituted a lawsuit. And all of those things led to this despicable situation that we're in today.

GF: Well as you say, for 20 years it's been sitting on the shelf and the world has had no vaccine against Lyme disease. What do you think the consequences of that have been?

ST: Well as you know, this was something that I had worked on as a young scientist. It makes me angry that we could have prevented hundreds of thousands of cases of Lyme disease, had that vaccine been deployed all these years. And there's no reason for it to remain on the shelf. But the situation around the withdrawal, as you say, you know you yourself had this impression that it was due to safety, when indeed it wasn't. That impression, the lawsuits have hindered the interest of companies in developing a new one.

GF: So you now are embarking on a mission to try to bring the vaccine back. What are you trying to do exactly?

ST: Some might describe it as a quixotic mission, but the point that I try to make is that companies would have to spend a 150 million dollars or more to bring a new vaccine to market. There are a number of candidates. It's not rocket science to make a vaccine against Lyme disease. But what a company is going to invest that kind of money in something which could easily fail as the SmithKline vaccine, the LYMErix vaccine did. And so our are point is that bringing something back, which was previously approved by the FDA, the U.S. FDA, should be much simpler and less expensive, perhaps even a tenth as expensive, so in terms of public health resources. It doesn't make sense to spend 150 million dollars when you might be able to do the job for 15.

GF: So who currently holds a patent then on this vaccine?

ST: The patent has expired on this vaccine and of course, I know how to make it. In fact, any high school recombinant DNA biology laboratory could make this vaccine.

GF: So what are the obstacles, why can't you get it done?

ST: Well the issues that we've had, are one, the only way we could revive this is as a nonprofit in that way it might be less attractive for people to institute lawsuits. They will do so, regardless of whether there's any harm. And as a nonprofit, we could not be accused of wanting to profit from other people's pain.

GF: But why a nonprofit? I mean if the incidents of Lyme disease are growing, as everybody says they are, and if as you say that this was in fact a safe vaccine, why is there not a pharmaceutical company that is willing to run with this now?

ST: It's a tainted product. No one will touch this one with a ten foot pole on a commercial basis and in fact the second reason we cannot get it is because the company itself that holds the vaccine, GlaxoSmithKline, would need to be completely legally indemnified against any future lawsuits if it were deployed again. And that would be a critical step because what we would hope to do is receive the actual, what we call vaccine master seed, which is the source of the vaccine that was actually marketed.

GF: There are some other efforts though I understand in Europe, to actually develop a vaccine.

ST: That's correct. There's an Austrian company, Valneva, which has what's called a fast-track designation by the FDA, which means that they will do their best to review very, very quickly any data that the company generates towards the approval process. So that is the leading candidate. But as I understand it, that company itself has problems in terms of raising the funds that are going to be required for the pivotal Phase 3 trial, which will probably require 10,000 people which means that it might cost 70 to 120 million dollars to do.

GF: How important do you think this is. I mean what's going to happen as the incidents grow if we don't have a vaccine?

ST: There are many other things people can be doing and so vaccine is yet another tool, but then in public health, we always know what we need to do, it's just trying to get people to do it. And so vaccine sort of takes it out of people's hands and we can tell people to use repellent and that might prevent tick bites, but if they don't do it every day, then it's going to fail. But if you're vaccinated then you don't have to think about doing something every day. So it would be a very, very useful thing for us to have, but people should not have this impression, there's nothing that we can do right now.

GF: Alright, we're going to talk a little bit about that with our next guest. But Sam Telford, thanks so much for joining us this morning.

ST: You are very welcome.

GF: Sam Telford is a Professor of Infectious diseases at Global Health at the Cummings School of Veterinary Medicine at Tufts University. And we reached him in Boston. In the United States about 300,000 people develop Lyme disease each year. Here in Canada, the numbers are lower, but growing. Officially about 1400 Canadians are diagnosed annually, but experts think the real number is probably ten times higher. To get a sense of treatment and prevention efforts in this country, I'm joined by one of Canada's leading experts on Lyme disease. Tara Moriarty is a Scientific Director of the Canadian Lyme disease network. She's also an Associate Professor in the faculties of Dentistry and Medicine at the University of Toronto and she's with me today in our Toronto studio. Hello and welcome.

TARA MORIARTY: Hello.

GF: So what are your thoughts on this idea of bringing back LYMErix vaccine?

TM: I think at this stage, certainly in many parts of Europe, the U.S. and now in Canada, we need to have multiple approaches to trying to prevent people from getting Lyme disease and a vaccine is an essential part of that because it is impossible for people to always be vigilant. Especially important for children, it's very hard to protect children because it's harder for them to control behaviors to make sure that they don't pick a disease up. So because of the problems with Valneva, with raising funds for these very, very expensive trials, I don't really think that we can wait. That we should wait. And so, even if it proves challenging to take the approach that Dr. Telford is taking, I think we should be exploring this so that we can potentially try to get some kind of vaccine out there.

GF: Give us a sense of how fast the disease is growing.

TM: So I can't tell you what the number is specifically this year, but certainly by 2020 we expect that 80 percent of Canadians living east of the Manitoba border, will be living in the habitat of the ticks that transmit Lyme disease. And this projection was made I think back in 2012. And so far every year, all of our measurements have borne up this projection. So right now we have a growing number of pockets all over southern Manitoba, Nova Scotia, southern Ontario, southern Quebec and northern Ontario, by the Manitoba border, we're having increasing numbers of pockets where we have Lyme disease and those are spreading so it's like all these dots on a map that are slowly every year converging more and more.

GF: Why are they spreading?

TM: Because the ticks are spreading. So as our winters get easier, get warmer, moisture not quite as dry, ticks that carry Lyme disease are more likely to survive through winters. And the more ticks there are, the more ticks that are carrying Lyme disease and survive through winter into the following year, the more likely you are to have a sustained self-sustaining population of ticks in an area that carry Lyme disease. As opposed to the way it has often been in the past, where ticks come, migrating birds will drop them and you might get ticks that way, but we are starting to have self-sustaining populations and it's partly the result of our warming winters.

GF: We talked about the number of official cases and pointed out that's only a fraction of those that are suspected, which suggests to me that this is not an easy thing to diagnose. Why?

TM: No. Well first of all, for any infectious disease only approximately ten per cent of cases are ever reported. So even for a reportable infection, it's pretty common for only ten per cent of them to be reported. And this is true for Lyme disease. The diagnosis is challenging, but it is also that many people are diagnosed, but their cases aren't reported to you know, Health Canada for example. But it is challenging to diagnose because like for many infectious diseases our diagnostic methods rely on an immune response to the bacteria and the ability to detect that immune response. And it can take a month or so for that to build up and so the problem with Lyme disease is that early on, the diagnostic tests which are based on an immune response, aren't very sensitive and about 50 per cent of people, especially if they're done earlier, and the problem is that you want to start treatment for Lyme disease as quickly as possible because you're more likely to develop forms of the disease that are harder to treat if your treatment starts later.

GF: So let's just quickly break it down for people then, what are the symptoms?

TM: So the hallmark symptom, you don't need laboratory testing to be diagnosed of Lyme disease if you have this, is a bull's eye rash. So that is a rash that has a red ring that's kind of clear in the centre and that expands or moves and there are photographs of that on the Health Canada website. If a doctor sees that or if you see that, you don't need lab testing, you should start getting treated.

GF: And treatment is what?

TM: Treatment is generally about three weeks of antibiotics, typically doxycycline. If a person still exhibits symptoms then they will be given a second course of antibiotics.

GF: And most people get well, but some don't, a small percentage don't.

TM: Yes.

GF: Do we know why?

TM: No we don't. So approximately ten per cent of people who are diagnosed with Lyme disease, antibiotic treatment is not effective. After the disease progresses for longer or lasts for longer and approximately ten per cent of patients, there have been some studies of this. Certainly people whose diagnosis and treatment started later are more likely to develop this form of disease. It may be an autoimmune response. Certain people who are more susceptible to rheumatoid arthritis for example, who have genetic susceptibility, are more likely to develop the treatment refractory form of arthritis. But we actually don't know. We don't know a lot about what causes this form of the disease and it is the most concerning form of the disease cause people can be very ill.

GF: And that's what makes it scary to people.

TM: Yes.

GF: And in the absence then of a vaccine, what is the recommendation. What do you tell people to do to protect themselves?

TM: Well the recommendations are to, if you are outdoors, to apply DEET containing products to your clothing, to your skin, if it's possible, to tuck your pants into your socks, you know to avoid long grasses. To cut down long grass in your backyard, for example, because people pick up Lyme disease in their yards as well. Some of the most effective measures are to make sure that you shower when you come in from being outdoors because the ticks take a while to latch on and so they'll be washed off when you shower. They're more likely to be disrupted and you could put your clothing in a clothes dryer on high for 15 minutes, if the clothes are dry and if your clothes are damp, put them in for an hour and that will kill any ticks that might be there. That's it. We can't really do a lot more than that.

GF: It sounds alarming. You know how concerned should we be about this?

TM: Well we should we should be concerned about it. The number of cases in Canada is increasing exponentially every year. The number of reported cases last year was about a thousand. We would expect that this year, the number of reported cases will be 2000. A major concern is that a lot of family physicians may not have seen Lyme disease yet and may not be comfortable with or experience diagnosing it. So this is a big concern is that, when we're at the leading edge of this problem that there will be more people who may not be diagnosed quickly enough and won't be getting treated quickly enough.

GF: Alright. We're going to have to leave it there, having scared everybody on their long weekend. Tara Moriarty, thanks very much for coming in today.

TM: Oh you're very welcome.

GF: Tara Moriarty is a Scientific Director of the Canadian Lyme disease network and an Associate Professor in the faculties of Dentistry and Medicine at the University of Toronto. She was with me in our Toronto studio. So stay with us. The CBC News is next. And then the controversy over monitoring controversial content on social media. Are some people being targeted unfairly? Revealing digital bias in our next half hour. I'm Gillian Findlay sitting in for Anna Maria Tremonti and you're listening to The Current.

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Efforts to block hate speech on Facebook actually work to discriminate against minorities, critics say

Guests: Daphne Keller, Elizabeth Dubois

GF: Hello, I'm Gillian Findlay sitting in for Anna Maria Tremonti and you're listening to The Current.

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GF: Still to come, some speech therapists have turned to a surprising source to help people who have trouble speaking. It's called beatboxing. An inventive musical style where musicians create complex rhythms and sounds using only their voices. And it's helping unlock words for people with speech impediments. That story in half an hour. But first online inequality, the issue of digital bias.

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GF: Social media can feel like a happy place. The food snaps, the baby pictures, the cat videos, but there's the ugly stuff too. The rants and screeds and tirades that at times make the internet feel toxic. Sometimes the posts and comments cross a line and they do get deleted. In fact, managing and policing social media has become an industry within an industry. There are algorithms to help monitor content and then there are real people. Facebook calls them "News Feed integrity data specialists." The company employs 10,000 of them and has plans to double that number by the end of the year. But that's brought out the critics concerned about how those moderators make choices. Concerned about bias. They say the field is tilted against racially and politically marginalized people. And they point to people like Shannon O'Hara Bulzone of San Diego. In 2016 she was taking her then two-year-old daughter to daycare when they encountered a woman walking her dog. The toddler reached out to pet the dog and that sent the owner into a tirade.

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VOICE: For a while I'm, you know, hey Bri don't touch the dog and catch up with her. She launches into this, 'Oh I bet she would like to touch this dog and then it would bit her and you would sue me cause all you brown people are just trying to get your hands on our money and my and our country' and she just went off. You know, I'm just trying to take my daughter into daycare and really, really irritated me, like the language that she used was just foul and vile and it made me feel small.

GF: Now not long after that, Shannon's sister was also on the receiving end of a racist rant from a woman standing outside her workplace repeatedly using the "N word." Shannon decided enough was enough and took to Facebook to share what had happened online, never imagining what would happen next.

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VOICE: My friends and everybody, like you know we're talking about it and there's a lot of commiseration and a lot of like, oh my God, that's awful and people sharing similar stories and just like comforting one another. You know, regardless of their race, like a lot of people were sympathetic and just being really nice and the post was removed and I was banned for three days. And this was the second time that that had happened.

GF: And Facebook said the post was removed because it contained hate speech. Shannon says that's ironic, given her previous experience trying to flag racist posts and a warning here, she uses a racist term in describing those efforts.

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VOICE: I've reported pages for hate speech. I reported a white man's comment because he said, "Oh you know, what's up my nigga" and I was like this is hate speech, like you can't say that here. And it didn't come down. And I was like really? Like are you kidding me?

GF: It turns out Shannon O'Hara Bulzone's story is not an isolated one. Francie Latour is a mother of three in Boston, where she's been listening in. Hello Francie.

FRANCIE LATOUR: Hi, how are you?

GF: Good. Well, what were you thinking as you listened to Shannon O'Hara Bulzone's story?

FL: So it very much resonates with my family's experience for sure and I think it really brings me back to this very basic thing about the experience of racism, which I think is really easy to forget. Racism is trauma. It's an injury that leaves lasting scars. You know we heard Shannon say it made her feel small. So if the experience of racism is an injury, you know being silenced on Facebook is the equivalent of you know reaching out for comfort and healing from an injury from a trauma and having that reaching out be shut down or stifled.

GF: Take me through what happened to you and your sons last summer.

FL: We were at a suburban supermarket in an open produce area. So I was in one kind of portion of it and my two sons who are 13 and 8 now, were on the opposite side. So I did not actually witness what happened. What happened was that a white man in his 30s came up to them and I'm actually not sure if I can repeat on air what he said, but he referred to them in a menacing, intimidating way by the N word twice and also using expletives.

GF: How did your kids react?

FL: So their reaction was to tell me nothing until we got in the car and as soon as the car door shut, my older son explained to me what had happened. And then he said they waited until we were in the car to tell me because they were afraid if they told me in the store, in real time, that the man would hurt them or hurt me.

GF: So you decided to turn to Facebook to talk about this. Why Facebook?

FL: When we got home, the kids were very, very rattled. They were shaken in a way that I have not seen. They all slept in my bed that night. I was very focused on tending to them and at the same time I was also rattled and shaken. I was angry. I was going through a lot emotionally and so I couldn't talk on the phone because I didn't want my kids to hear me rattled because I needed to be their rock, but I could type, you know, my kids are familiar enough with me, you know, just typing on the phone that they wouldn't know what I was writing. And so that's what I proceeded to do. I went to Facebook where I have you know a big community of black female friends, but also friends from all different kinds of backgrounds to explain what had happened. And it was so raw that all I could do was just document. I literally was just repeating what my son had said was said to them are you.

GF: So you repeated the "N word" and Facebook took the post down.

FL: Within minutes.

GF: Within minutes it was shut down. And unlike Shannon, this had never happened to me before. So I was not prepared. I actually didn't understand what was happening. Everything seemed to kind of freeze on my Facebook and then a message popped up that said my post was removed and that it had violated community standards. And then a whole bunch of things shut down, like apps related to my Facebook shut down, like Facebook Messenger. I honestly thought it was a log in problem. I really, it took actually a while to process that this was what was happening to me because I had heard it happened to other black people of course, but it had never happened to me.

GF: Do you know how Facebook came to flag it, did you get an answer from them?

FL: I won't say that I got an answer, but I did get an apology and the post was restored.

GF: ,You know online platforms I think rightly, are under big pressure to clamp down on hate speech or at least what their algorithms and their monitors identify as hate speech. How do you think, given your experience, how can they do that while not also silencing the stories and the experiences like yours?

FL: What I do know is that like the rest of you know the big tech industry, Facebook is overwhelmingly white. And so all the way down the line, the people who are hiring these integrity data specialists, the people who end up applying, the people who end up getting hired, the people who are put in charge of those teams, they are going to tend to be overwhelmingly white. And with that comes an extreme amount of bias and that bias manifests in decision-making about how they do their job.

GF: Well we're going to discuss this with other people who may have some answers. Francie Latour thanks so much for joining us this morning.

FL: Thank you for having me.

GF: Francie Latour is a mother of three and we reached her in Boston. My next guest has been following this issue with growing concern, as major online platforms, even governments struggle to balance the fight against hate with the right to freedom of expression. Daphne Keller is Intermediary Liability Director at the Center for Internet and Society at Stanford Law School. And she's in our Toronto studio this morning. Hello.

DAPHNE KELLER: Hello.

GF: So we've heard from Francie Latour and Shannon O'Hara Bulzone, their experiences, do they surprise you?

DK: They're very disturbing, but they don't surprise me. I think this is a pattern that we should come to expect as we have this massive volume of human communication being reviewed by a hard pressed workforce who are checking people's posts at a rate of you know, ten seconds to review each thing.

GF: So how do they do that? How does that process work?

DK: There is a lot of mystery to it these days. At this point there are certainly technical filters in the mix that proactively identify certain kinds of content. There's duplicate detection for images and videos that are copyright infringing or have been identified as associated with terrorism or violent extremism.

GF: But you're talking about machines at this point, algorithms, artificial intelligence.

DK: Yes right.

GF: So how much of this detective work is being done by machines?

DK: Many, many people would like to know that. What we do know at least as testimony from Facebook and YouTube executives in January, is that all of that algorithmically flagged content, at least in the violent extremist context, goes to humans for review afterwards. To make sure that the machines didn't make mistakes because they do make mistakes and I very much suspect that that's what happened in Francie's horrible story.

GF: Right. Because the knock against the algorithm is that they can't judge context, they can't judge nuance and they can't distinguish between something that's intended to be harmful or something that's just being repeated as somebody's experience, it's being condemned, right.

DK: Exactly.

GF: OK. So they go to humans for review, is that a good thing?

DK: Well unfortunately, we're not perfect either. And you know there's just an overwhelming body of research on implicit bias and you know specifically the ways in which when we make snap judgments and you know almost like act with our lizard brain, we are much more likely to engage in us-them thinking, we are much more likely to act based on stereotypes. There are studies showing people are likelier to assume that a face is hostile, if it's a face of a race other than their own. There's just there are a lot of human and societal problems that come into the mix. And if you think about the people on the frontline doing this work, many of whom are in Southeast Asia. So they're not necessarily coming from a U.S. or Canadian cultural context themselves. They do an entire shift looking at something every 10 seconds and making a judgment and trying to accurately assess the kind of nuance that's part of normal human communication in that kind of a work environment is just extremely hard

GF: And yet Facebook says they're are about to double the number of monitors that they have to do this, in recognition that something has to be done.

DK: A lot of that as a result of political pressure, mostly coming out of the European Union and mostly driven by concerns about violent extremism. And that really raises problems of its own because the pressure is to find ISIS supporters or you know people who are associated with Middle Eastern and Islamic extremism and the margin of error, you know, when people are overcautious, when companies just go ahead and take something down to be safe or make an assumption, that margin of error of silencing lawful speech and important speech and private and personal speech like Francie's, the margin of error for that kind of evil is systematically going to fall on people who are speaking Arabic or who are talking about Islam or speaking Farsi or Chechen. You know there are stories, both about you know human rights activists in Syria uploading videos to document atrocities for a future human rights prosecution, having those taken down. So that's sort of really important public speech. But there are also private individuals who post a prayer and have it taken down. So it's a pervasive problem with a systematic impact that is discriminatory.

GF: So what's the solution here Daphne, if we can't trust the machines and the people have biases, how do you deal with something like this?

DK: I will emphatically second Francie's point that hiring a more diverse workforce is an essential part of it. We also need way more public transparency about what content is being taken down and what's going on because the stories we're hearing are in some sense exceptional, where the user who posted the speech found out about it and got upset and fought to get it reinstated. What's much more common is that speech gets taken down and nobody fights to put it back. And so the the only way we can find out about all those sort of silent instances of content being taken down is if there's public transparency and you can sort of crowd source the job of figuring out what's going on.

GF: You mentioned the European Union Commission has been looking into this issue, I think in the context of potential terrorist activity online as you mentioned, but what's being proposed there and what are your concerns.

DK: So they issued a recommendation in March, which is you know it's not a draft law, but it's a relatively formal proposal and route to being potentially a law, and what they say is that platforms generally, not just the mega platforms with the resources to do it but, anybody who is hosting user-generated content should use automated filters to find extremist content within a couple of hours. To identify it accurately within a couple of hours and get it taken down.

GF: Is that possible to do that quickly?

DK: No. I mean it maybe it's possible to do it that quickly, if you accept a massive rate of false positives and taking down lawful speech of you know people talking about immigration or documenting atrocities or uploading prayers in Arabic. But no, I don't think it's possible to do it that quickly at all. Another issue on the line is national security and protection from violent extremism, like we don't know that these very overzealous removal efforts ultimately do keep us safer than some more nuanced effort would do. You know it will predictably drive real extremists off of public platforms, where they encounter counter speech and other perspectives and into echo chambers where they're talking to each other, which may not really be a security improvement. And for people who are not real extremists, people who were just trying to talk about current events or about their experiences as members of marginalized communities, having government instigated platform policies that are systematically silencing people when they shouldn't be and silencing them in ways that seem to be driven by their race or religion, that doesn't seem like a great way to promote national security.

GF: How important is it that we get the balance right?

DK: I think, I'm torn here because I think it is extremely important, but I also think perfection is unachievable. And so this is and I think it's not a decision we can push off on tech companies and say hey Facebook, Twitter, YouTube, Google takedown all the bad stuff, don't take down the good stuff. Come back to us when you've gotten that right. Because they're not going to and societies need to make a judgment about how much harm to lawful speech they're willing to tolerate in exchange for potential security improvement. What it is that we are asking from them.

GF: Alright. Daphne Keller thanks so much for coming in to talk to us today.

DK: Thank you for having me.

GF: Daphne Keller is the Intermediary Liability Director at the Center for Internet and Society at the Stanford Law School. And she was with us in our Toronto studio. So how is all of this discussion about content moderation playing out in Canada. I'm joined now by Elizabeth Dubois. She's an associate professor of communications at the University of Ottawa and a fellow at the public policy forum. Today she's in our Halifax studio. Good morning.

ELIZABETH DUBOIS: Good morning.

GF: You heard Daphne talk about the legislation being proposed and discussed by the EU Commission on removing harmful content. How applicable is that to what's happening in Canada?

ED: The Canadian context is still being sorted out. You know, we don't have that kind of legislation that's been put forward just yet, but it's definitely part of the conversation and it's part of a conversation to a certain extent about terrorism and extreme violence, which we've heard about already on the program, but also in conversations about things like harassment of women online and about things like spreading false information about different individuals. We're talking a lot about it in the electoral context with the Ontario election coming up and the federal election in 2019. It's kind of seeping across a bunch of different policy areas.

GF: On this issue of bias, you have said that the real problem is we don't know what these biases actually look like because we don't have access to the data from the companies themselves. We don't know what their criteria is for the decisions that they make. Why is that important and why do we not know. Why have companies not shared that information?

ED: Exactly. It's a major issue for us because we know that there are these efforts to take information down, which is harmful in some way, but harmful in some way is completely dependent at this point on the community standards or community guidelines of each of these different platforms. But then these platforms are responsible for respecting law in the various nation states that they find themselves working in. And what's defined as hate speech here in Canada is not necessarily the same thing that's defined as hate speech elsewhere. So we have this complex system of defining what's right and wrong and then we have these companies that have a vested interest in making a safe community, but reasonably aren't sure that they're always doing it right. And so what happens is these companies don't want to share what they're doing because people are going to find errors in it.

GF: Should they be forced to. Should governments be forcing them to share this information?

ED: I think so because the only way we get better at this is to know where the problems are so that we can go and fix them. And when a company has an incentive structure to go fix the problem, come back when it's done, we don't know what is kind of being glossed over and what is really been given the do rigorous process it needs.

GF: Well this week actually, or last week, Facebook actually released what they called its transparency report, in which they did disclose some information at least, about how it moderates and removes content from its pages. What stood out for you in that report?

ED: What stands out is that there is clear progress being made. There's a clear will within the company to make this better but, as both of your previous guests have mentioned we also have an issue of the people who are doing the moderation are doing it at such a fast speed, it's hard to imagine that they are being given the time and space to do it well. We don't have contextual information for many communities. Many of the automated approaches and even the manual human approaches are based primarily on English language and then some of the languages where we're most likely to see, we think we're most likely to see, examples of inciting terrorism. We don't have things like the Canadian context where there are Aboriginal populations, which are very small tightknit communities who use Facebook very regularly. We have nobody that I can tell, who knows those communities, working at Facebook, making sure that the analysis that's being done is culturally appropriate.

GF: So what would you like to see then as a first step for change on policy around this issue?

ED: I think what needs to happen is we need to make sure that there is some sort of auditing process here and so Daphne talked a bit about the transparency side of this and I think we need to have a formal auditing process where we make sure that somebody and it doesn't necessarily need to be government, it could be a third party certainly, but somebody is able to go in and look at the content moderation process that's happening and make sure that it is happening in an ethical and not only efficient way.

GF: Elizabeth Dubois, thanks for being with us today. Elizabeth Dubois is an associate professor of communications at the University of Ottawa and a fellow at the public policy forum. She was in our Halifax studio. And just so you know, we did reach out to Facebook to respond to some of the concerns raised by our guests today. We have yet to hear anything back. So coming up, in our next half hour, therapy with a beat. Why speech therapists are turning to the up from the streets art of beatboxing. I'm Gillian Findlay sitting in for Anna Maria Tremonti. You're listening to The Current.

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Music in mind and mouth: How beatboxing is helping kids with speech problems

Guests: Kaila Mullady, Sophie Scott, Daniel Levitin

GF: I'm Gillian Findlay sitting in for Anna Maria Tremonti and this is The Current.

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Clip of beatboxing.

GF: Well that is Kaila Mullady, world champion beatboxer, performing with her partner Mark Martin. They're making all those sounds remarkably, just using their voices. Not only is beatboxing a fascinating style of music, as we first told you in April, it's also gaining a lot of attention in the field of speech therapy. In addition to performing, Kaila Mullady and Mark Martin work with kids with delayed speech including Brendan Mullady, Kaila's 13-year-old cousin.

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VOICE 1: So I'll just go over some beatboxing sounds, like re-practice those, you know when I talk in beatbox. I want to show you that and then we'll make a beat on a loop station. Can we hear some of your beatboxing first of all because you just did a little on the staircase and I can tell you you've been practicing cause it sounds amazing. Today we are in Long Island and we're visiting my cousin who actually inspired my part of the beatboxing in speech therapy curriculum and we're going to work with him today and just make a song with him and help with his articulation and speech goals. So when Mark and I are beatboxing, we're doing three letters. So let's hear, I heard your 'P,' your 'P' sounded really awesome, that's called the bass drum right, so let me hear your bass drum sound.

VOICE 2: My name is Karen. Brendan is my son. He's 13-years-old.

VOICE 1: So why don't we play. We're going to play a game OK. The game is called follow the leader. Alright, so the first one goes like this. Okay second one.

VOICE 2: He was nonverbal up until the time he was in third grade and then he was diagnosed with apraxia, which is an oral motor disease. He wasn't even pronouncing the letters in the alphabet until Kaila started working with him and teaching him how to say the different letters with beatboxing. He went from a nonverbal kid to complete sentences, complete talking.

VOICE 3: We make a beat with my voice.

VOICE 2: And now he's full sentences. He's not always clear indiscernible, but you are able to understand, he's able to communicate all of his needs right now. He can talk to his friends. He can go out and have a full complete life.

VOICE 1: So if we beat-rhyme that word what would it sound like. Brendan is an inspiration to me because he is the reason why I made this connection. Without him and seeing him work with a speech pathologist, I don't know if I ever would have really correlated this in the way that I did.

GF: That was beatboxer Kaila Mullady working there with her young cousin Brendan. Kaila Mullady now joins me from New York City. Hello.

KAILA MULLADY: Hey, how you doing?

GF: Well I want to get to what got you thinking the beatboxing might be good for speech therapy, but before we do that, I want you to explain what it is that you do.

KM: So beatboxing is basically imitating different instruments with your human instrument. So you could do drums, basses, trumpets, basically you put them all together and you make a beat. So it's really fun and it really just allows people to express themselves fully and find the power of their voice.

GF: But just because we're only hearing you hear, what physically are you doing with your voice, with your lips, with your nasal passages?

KM: So a lot of it is lips and your tongue right. So if I do the 'k' sound, it's actually the middle of my tongue on the roof of my mouth. If I do the 'p' sound, it's just my lips coming together and putting a little pressure to make that sound. So basically if you have tongue, you have teeth, you have lips, you have lungs and you have a good imagination, anyone in the world can beatbox, no matter if you're old or young.

GF: And did you teach yourself?

KM: Actually I did. Yeah. I've been beat boxing since man, I had to have been in first grade, second grade. I remember in fourth grade doing it in class and people were really into it and this kid James telling me that I was beatboxing and I was just like OK.

GF: You had no idea what that was.

KM: Yeah.

GF: You just liked to make sounds.

KM: Absolutely. I mean what kid doesn't like to make sounds. I think that's why this really works with kids as well because instead of them coming into a class where we say, OK sit down, be quiet, we say, actually make as much noise as you want. The only thing I want you to do is listen to each other and not be afraid to speak up.

GF: OK so then why is this a good use or a good instrument to use in speech therapy.

KM: So when I'm beatboxing, as you heard a little bit in the clip, beatboxing is all letters. So when I'm beat boxing, I'm just articulating all of the letters in my speech. Right. So and even as beatboxers, the way that we teach it and the way that we write it on paper, if I want to show someone, I'll write down PTK. So it has a direct correlation to letters. Also it's extremely fun. What I noticed with Brendan was when a speech pathologist would come over, it would be after school and no kid wants to come home from school and continue to do schoolwork, especially when his brother and sister weren't doing that. So a lot of times he would kind of shut down or hide under the table or run away and when I was babysitting I was like, I felt the duty of having to make this class work. So as soon as we started adding the beatboxing element into it, that's when he sat down and he was fully engaged with his teacher. He would sit down for the hour and if she held up a card that said baseball instead of him just saying baseball, we would say baseball, baseball bat and we would make beats and what me and the speech pathologist noticed that, you know, even when she was gone, he was practicing his beatboxing. So a lot of the things that we find is you know, kids aren't going to go home and really want to hold up flashcards and just say these words over and over again. But with beatboxing, Mark and I call it, "sneaking vegetables into the fruit smoothie," they don't even know that they're working on their speech goals. They just think that they're practicing their beats and making music and there's so many videos on YouTube now. And what I really love about it is, you know in speech pathology, when you're there, when you're in the speech therapy class, it's kind of telling you that there's something wrong with you, that you're not speaking as well as other people, but when you're a beatboxer, you're a superstar. We literally are telling these kids that they can do anything that they want with their instrument, with their mouth and when they go back into school and they start beatboxing for people, they get huge positive reinforcement cause people are like, "Whoa, what are you doing?" So we kind of take what these kids were told that they're not good at and then we give them superpowers with it. And you could see the excitement on their faces when we're there.

GF: What kind of results have you seen with the kids you've worked with?

KM: Well, it's been really amazing. Last summer we did a 20 class for 10 weeks, we offered free speech therapy classes in New York City to families and we got about eight kids. And by the end of it, we heard from parents that teachers were going to the parents and asking them what they were doing with their kids because the teachers, not even knowing that they were doing this work with us, could see the difference in the students. We had another parent who said that she's been taking her son to speech therapy for three years and what we got out of him in 20 sessions was more than three years. And it's not that beatboxing is the only way to do speech therapy, it's not at all. This is just a tool for speech pathologists or speech therapists to use or even beat boxers to use that just makes it fun for the kids. I'm a firm believer in arts education and that when you make learning fun that kids are going to want to do it. They're going to go home and be practicing when you're not there.

GF: So is it really just creating the enthusiasm around it. I mean are you actually teaching them a different skill than the speech pathologist would be trying to teach?

KM: It's the same skills. When I do beat rhyming right, when we say baseball bat, understanding the parts of the word that's a phonemic awareness. And when we makes songs, we do rhymes. So rhyming words, for a kid to be able to distinguish that at and bat rhyme and have the same ending, that's a huge part of speech pathology. We're doing the same thing that speech pathologists are doing, we're just doing it in a different way. And I think for us our goal is to work more in hand with speech therapists, for them to also help us on our journey and for them to help us make our curriculum and our course more academically sound. I want this for all speech therapists and even you know, beat boxers to be able to use this as a tool and I want to make it for them as well something that they can use and feel comfortable and confident using with their students.

GF: Are some of these kids pretty good big boxers?

KM: Oh my gosh, yes. It's actually incredible. They teach me stuff.

GF: Alright. Thank you Kaila. Kaila Mullady is a world champion beatboxer who uses beatboxing in speech therapy and she was in New York City.

SOUNDCLIP

Clip of beatboxing.

GF: That is a British beatboxer by the name of Reeps One. Along with Kaila Mullady, he's participating in a research study exploring the science of beatboxing. Some of those multilayered complex sounds you've heard are technically impossible to produce with traditional phonetics, so scientists want to know more about how beatboxers do it. The hope is that they'll be able to use that knowledge to help people for whom talking is difficult, stroke victims for instance. Sophie Scott studies beatboxers. She's a professor at University College London and London is where we have reached her today. Hi There.

SOPHIE SCOTT: Hi. Hello.

GF: When we talk about the science of beatboxing, what are we talking about?

SS: Well there's like a couple of different things that we've been doing scientifically with beatboxing. We've been trying to work out more about actually how beatboxers make the sounds that they're making. We do that by trying to image what's called the vocal tracks. All the stuff we use to produce the instruments, human voice. So the larynx and the space at the back of the tongue, the shape of the tongue and the lips. So we do that by running our magnetic resonance imaging scanner, actually as a video camera, looking at the movements and we also try to ask questions about how the brain is controlling that. So we go in and we look at the neurosis are recruited, when beatboxers are doing different kinds of things with their voices.

GF: And what are you finding?

SS: Well we've found quite interestingly, that if you compare beatboxers listening to beatboxing, so think about it as an expertise where you've acquired a skill with a musical instrument and you compare them to electric guitar players listening to guitar music or people who are not musicians at all. What you find is that you get particular networks the brain associates with, you know, the expertise in playing an instrument recruited, when a beatboxer listens to beatboxing. That's actually very similar to what you see when the guitar players listen to guitar playing. You could actually see the listening brain being shaped by the musical experience that the people have in producing those sounds. It's harder to look at the production side of it, but we've been doing so, at this stage we are finding networks in the brain associated with the production of sounds for beatboxing and also as I say, learning more about simply how people using their articulations to make the sounds by demonstration with our scanners.

GF: Sophie what got you interested in doing this research?

SS: I got very interested in different kinds of vocal expertise because if you work in speech and language, you get caught up as I have for many years, on the fact that language is amazing and very complicated and speech is an extraordinary skill. I mean it's incredible that you and I are doing what we're doing now and we're understanding each other. There's actually only one thing we can do with our voice and there's a tremendous variety of different things people can do with their voices. People can do all sorts of, you know, different kinds of singing, people can do different sorts of vocal mimicry and that's actually something I got very interested in and I was looking at vocal impressionists and trying to find out more about how they were doing good impressions of different talkers and somebody in my lab said, you know we should be doing beatboxing, we should definitely look at this. And so postdocs from my lab, Carolyn McGettigan and Zarinah Agnew went to the UK beatboxing championships and they literally went over the barrier at the front and were shouting at people on stage, "Can we scan your brain?" And that's how we found Reeps One, Harry. And he's been amazing cause he's an incredibly talented beatboxer and he's also very interested in what he's doing, but he's also very integrated into the beatboxing community. So he's been fantastic at helping us find and contact other beatboxers.

GF: You know clearly, it's a rather rare skill, what role do genetics play here, are some people born to be beatboxers and other people, I mean just like some people are tone deaf.

SS: It's a very good question. I think part of it is simply access. It's not something that we tend to encourage, we certainly don't teach people to do this. So beatboxers tend to get into it as something they do themselves. But your point about genetics is very interesting because we have, we're just at the start of beginning a study with a group in Nijmegen in Holland, who have been doing an enormous set of studies looking at the genetic basis for language variation. How people can be more or less affected by different kinds of problems in spoken language. They're interested in looking at beatboxing as a way of looking at vocal expertise, without confounding it, necessarily with questions about language or language opportunity but taking it as an example of a learned skill. We find anything in people who are really good beatboxers that might differentiate them from the rest of the population.

GF: What do you see as the applications. We've talked about speech therapy, but are there applications beyond that?

SS: I think the applications in speech therapy are likely to be huge because historically, in speech therapy what we do is we take somebody who has a problem with speech and we give them speech sounds to practice. So we're giving them something, which they struggle to do. And what we've not been good at is approaching or thinking about how other disciplines approach vocal learning and vocal change. I think there's a lot we could learn for example from how beatboxers approach producing different sorts of sounds by not worrying too much about language at all, but thinking about the sound. Think about it as music and exactly like you saw in those earlier demonstrations. I think that can be a really powerful approach because the thought of standing up and speaking and your voice not being clear in the words you say, makes life very, very hard. Whereas if we can say, you know what don't worry about speech at all, let's make some really interesting, fun musical sounds. That's a completely different approach that would let people practice exactly the same sorts of skills they'll need for speech, but without that terrible burden of you're not speaking clearly, I can't understand it. So I think it's a really important step forward and I think it's going to be really helpful for work with children, but I suspect it's going to be very, very important for work with adults. And of course more generally, because it is a fantastic example of an acquired vocal skill, I as a scientist, I'm really interested in what it can teach us about how we acquire this kind of expertise in the brain. And that could help us understand in much more general sense, how we could help people who for example had a stroke because if we can understand expertise in learning, that might help us promote expertise in learning in the brain.

GF: Thanks so much for joining us today.

SS: Thank you very much.

GF: Sophie Scott is a professor and researcher at the University College of London and we reached her in London, England.

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Clip of beatboxing.

GF: The relationship between music and neuroscience has long fascinated researchers. Daniel Levitin is a Professor Emeritus, of psychology and music at Montreal's McGill University. He's also a musician and author of the book, "This Is Your Brain On Music," and we have reached him in Hollywood, California. Hello.

DANIEL LEVITIN: Hi Gillian.

GF: Well what are you thinking as you've been listening to Sophie and to Kaila talk about the work they're doing with beatboxing.

DL: Well, it's very exciting. As Kaila said, in addition to motivating people who are having speech and language difficulties to focus on improving their communication abilities, she's actually teaching some of the syllables that they need in order to communicate: P like Peter, T like Tango, F like Foxtrot. And although not all of the sounds that beatboxers make are part of the English language, she is developing this phonemic awareness, a focus on what your mouth and its constituent parts are doing in the service of communication.

GF: I'm interested in this whole question of how music affects the brain. Does it actually physically change what's happening in the brain?

SS: Well it does, but of course everything does. Our conversation is changing our brains and going for a walk in the snow changes your brain. I mean that's what learning and experience are. They are chemical and electrical changes in brain states. The ways that music changes the brain can be positive or negative. The positive side is that listening to music that you like, starts a cascade of neurochemical events releasing pleasure hormones, such as dopamine and the brain's own opioids. Music that you don't like can cause a really aversive response including the production of glucose corticosteroids or stress hormones, that can increase your heart rate and your blood pressure and give you a sour taste in your mouth.

GF: So how do you think beatboxing compares to other kinds of music. Would there be different neurochemical changes that take place as a result of listening or participating in it?

DL: Well at the beginning Gillian, it depends on whether you like it or not. Right. I mean if you like beatboxing, you're going to get the same pleasurable sense that you might get from listening to Mahler or you know maybe Biz Markie will do for you what Ryan Adams does for someone else. The next level down I would say is the interesting thing about beatboxing is that, although we don't know for sure, I'm speculating based on the little bit of early evidence, that it activates both speech and musical centres, as music with lyrics would. And that's interesting. It creates a fuller and richer experience.

GF: Speaking music and the examples that you used, we've got one lined up here. So I want you to take a listen for a minute to Ella Fitzgerald.

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Clip of Ella Fitzgerald scatting.

GF: I like that. So what's happening to my brain, as I listen to it?

DL: Isn't that fantastic? Boy, you and I are both going to be in good moods for the rest of the day.

GF: Hard not to be, I think.

DL: You know again, if you like it Gillian, you're going to be experiencing a kind of opioid and dopamine high that could last for a little while. It could keep you in a good mood for a while. Part of it is that it sounds like she's in a good mood and good moods are contagious.

GF: It also sounds though that she's beatboxing almost. What's the difference between what she's doing and what Kaila was doing, for instance.

DL: Well so she's emulating musical instruments there. I mean she's trying to do with her voice what a saxophone might do in a solo and I'd say the difference is she's not overtly trying to sound like a saxophone. There are people that do that, when generally when she's scatting, she's not trying to make you think that you're hearing another instrument. She's taking some of the qualities of that instrument and rendering them with her voice, but again as Sophie was saying, it's not mimicry. It's not like she's Rich Little doing impressions.

GF: So scatting and beatboxing, are there other comparable kinds of music that you've studied from around the world.

DL: This is a long tradition. We tend to think of beatboxing as new, but as you just demonstrated to all of us, it goes back at least to the 1950s with Ella, Louis Armstrong before that, and of course in North America there's a tradition of the talking blues that goes back to the early 1900s. And then when we look at other cultures in Africa, in India, for centuries there's been a tradition of people making musical instrument sounds, particularly percussion sounds, with their mouths just because they can.

GF: So why is it important do you think to better understand this kind of music?

DL: Well there's a lot of answers to that. You know, the start of the original Star Trek series used to open up with the quote, "Space: The Final Frontier" and great Canadian William Shatner, right. I think it's not the final frontier, I think the brain is. We know relatively little about it. We've mapped the universe to a great extent, but we haven't mapped the brain very well yet. It's the most complex biological organism we know of in the universe and any information we can get about it is going to be helpful. How it works in normal situations, how it malfunctions in other situations, all of that is the kind of basic science that is going to support being able to treat people as Sophie said who were victims of stroke, Alzheimer's disease, other injuries or brain diseases. Just knowing how the circuits work is vital information at these early stages.

GF: Alright. Well thank you so much for joining us today.

DL: Thank you Gillian.

GF: Daniel Levitin is a Professor Emeritus, of psychology and music at McGill University and the author of several books including, "This Is Your Brain On Music." He joined us from Hollywood, California, for that conversation in April. So, tell us what you think. Send us samples of your beatboxing. To comment on this or any other story you hear on the program, you can tweet us, you can post your comment on Facebook or you can e-mail us through our website. Go to cbc.ca/thecurrent and click on the contact us link. And while you're there, check out pictures, links and download our podcast. It's all at cbc.ca/thecurrent. And that is our program for today. Stay tuned to Radio One for Q and a conversation with musician, Jann Arden, about caring for her mother after she was diagnosed with Alzheimer's. Remember, you can always take The Current with you on the CBC Radio app. It lets you browse through past episodes of the show and gets you listening in just a few seconds. That app is free from the App Store or from Google Play. So after all that promotion, we just heard about beatboxing, how it's being used to unlock the secrets of the brain and as a tool for speech therapy. It may sound like a very special skill, but world champion beatboxer Kaila Mullady says, if you have lips, teeth and lungs, you can do it too. So she is going to take us out today with a quick lesson in the art of vocal percussion. I'm Gillian Findlay. Anna Maria Tremonti will be back in this chair tomorrow. Thanks for listening to The Current.

SOUNDCLIP

Clip of Kaila Mullady demonstrating how to beatbox.

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May 21, 2018 episode transcript

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