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The Current Transcript for August 24, 2018

Host: Ioanna Roumeliotis

STORIES FROM THIS EPISODE

Prologue

[Music: Theme]

SOUNDCLIP

MAXIME BERNIER: The Conservative Party has abandoned conservative. It does not represent them anymore.

IOANNA ROUMELIOTIS: It's not the sound bite the federal Conservatives were hoping you would hear today as they gather in Halifax for their first party convention under leader Andrew Scheer; but Maxime Bernier the former leadership contender turned rogue MP changed the storyline yesterday by going in front of the cameras to denounce the party and its leader. He quit the tories and says he will found his own conservative party. But how many will join him? And what does this dustup mean for the official opposition just a year or so away from a federal election? That discussion first up today. Then, Italian prosecutor Alessandra Cerreti managed to crack one of the country's most notorious mobs. She got to the Mafia's men by trying something no one had ever thought to try before, working with the Mafia's women.

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I remember discussions with colleagues who believed that women in the Ndrangheta couldn't do any more than prepare a plate of pasta.

IR: The remarkable power of Mafia women in half an hour. Plus talking sex and disabilities all too often for young people like Jessica it's a topic considered too taboo to take on.

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I'm like, "how do they do all this?" I thought it was gross at first, but I saw diagrams and demonstrations and I think, "hmm, that's interesting."

IR: More on that most interesting topic in an hour. I'm Ioanna Roumeliotis and this is the summer edition of The Current.

Back To Top »

Bernier's exit will split the vote — and help Liberals, says veteran Conservative

Guests: Erin O’Toole, Steven Fletcher, Stockwell Day

SOUNDCLIP

MAXIME BERNIER: I have come to realize over the past year that this party is too intellectually and morally corrupt to be reformed. I know for a fact that many in the caucus privately oppose supply management but buying votes in a few key ridings is more important than defending the interests of all Canadians.

IR: Strong words from Maxime Bernier about the party he wanted to lead just over a year ago. Yesterday the MP for Beauce, Quebec announced he would be leaving the Conservative Party of Canada and starting up a new party to champion what he considers real conservative values. The announcement was timed for maximum impact as federal Conservatives gathered for their policy convention in Halifax. And that's where we've reached Erin O'Toole, Conservative Member of Parliament for Durham, Ontario. Hello.

ERIN O'TOOLE: Good morning.

IR: What is your reaction to Maxime Bernier's announcement?

ERIN O'TOOLE: Well obviously disappointed; Max is a friend and I certainly think it's a very short sighted decision for him to sort of take his ball and go home particularly when we have 3000 of our most active volunteers and people from across the country debating the very issues he claims we're not debating. In fact we'll be debating supply management. A whole range of other issues that's what Conservatives do. Having been in the leadership race with Max I can say without question he never could get over the loss. It's hard for any of us. We put it all out on the field but he never reengaged and it continued to get worse so obviously he made the decision to just leave it.

IR: Do you think he is starting a new party because he's a sore loser?

ERIN O'TOOLE: Oh absolutely. Listen he got very close to winning. I was behind him in third, but he was quite close and I think that was tough. Many on his team thought he was going to win. And I think for the length he has been in politics, you know more than twice as long as I have for example, I think he saw his window of time sort of closing and there are certain issues he likes to talk about and he wants to put those front and centre so I think this was a case of putting himself before his team members. Most people think that's not the way to go in terms of building a coalition to replace Justin Trudeau and the Liberals next year. But he has made his decision, it is disappointing, but it perhaps is best for him.

IR: And when he did leave, he used some very strong language; and he said that he's abandoning a party that has abandoned its values and he called it morally and intellectually corrupt on his way out. How do you respond to that?

ERIN O'TOOLE: Well I kind of respond to that with a bit of a smile. You know when I ran against Max, I challenged him to debates on supply management. He would never accept them. Years ago he was part of the Parti Quebecois in Quebec so he has been inconsistent on Canada's role in Confederation. If he wants to debate any of those things he should have come to Halifax. That's what we're doing for the next few days. Conservatives are very much a grassroots party. We have some issues in the next two days that will be quite passionate on the floor. And so our party reflects all parts of the conservative coalition including libertarians -- libertarians generally like open borders so if Max is a libertarian some of the things he said on immigration and other things are intellectually inconsistent; so he doesn't like to debate and now I think he's going to have a debate in a caucus of one and that's perhaps best for him.

IR: The question is too, will the Conservative Party be debating the issue of diversity? Bernier has said that too much diversity can be harmful to our national identity and that too much immigration can be a burden. How divisive are the issues of diversity and immigration within the Conservative Party?

ERIN O'TOOLE: Not at all actually. You know I put out a tweet after his sort of tweets just outlining most of the first in the House of Commons whether it was the first person of colour as a cabinet minister or a lot of the first people from all parts of the world that have as Conservatives joined the House of Commons and participated in Canada's democracy -- from John Diefenbaker and the Bill of Rights right through to Stephen Harper, we have a consistent record of welcoming people that share our philosophy. That want to see Canada as a great place. I tweeted only one thing yesterday, a great quote from Maxime Bernier on diversity in the House of Commons a few years ago. So as I said, Max has never been that consistent. I guess he's consistent in being inconsistent. But if he wanted to debate any of these things including illegal border crossings, these sorts of things -- conservatives tackle tough questions and we don't have a top down approach like Justin Trudeau does.

IR: Do you think his departure is a good thing for Conservatives? Stephen Harper tweeted as much saying that it will allow the Conservative Party of Canada to move forward united behind Andrew Scheer.

ERIN O'TOOLE: Well look we're basically tied in the polls. We won a very critical Quebec by-election a few months ago. Everywhere I go in Ontario, we're having men and women step up wanting to run for vacant seats for us. There's a real momentum that we're going to win, but teams only win when we're united and when we're all going in the same direction and Max since the leadership, this isn't the first time you know writing a book all these various things he was doing were distractions not just to the team but to him it didn't allow him to focus on representing Beauce in the house or representing a strong part of our team. I've always said that Max is important.

IR: But he did come in second and you acknowledge that. So he clearly has a base of support. So are you concerned that conservatives from the party will follow him?

ERIN O'TOOLE: Not really no. And I think you know we have a coalition that has libertarians, you know red tories, fiscal tories, social conservatives. We've always had a coalition where we respect one another's views and if you don't get 100 percent of your platform ideas in the policy, that's part of being on a team, you have to be willing to respect other people in the party. That's why we're here in Halifax. That's why we have 3000 delegates. We had a fiery and great event kickoff last night with a number of great speakers including Premier Ford. Everyone is behind Andrew Scheer. I think that close finish, Max couldn't get past it. It was tough for me, I came third. I poured my heart into it, but if you believe in the team and you really believe in forming a Conservative government replacing the Liberals, you've got to work together behind Andrew Scheer and that's what we're going to do. It's unfortunate because I like Max but he has made his own [inaudible].

IR: How nervous are your caucus colleagues about this rift given an election is about a year away?

ERIN O'TOOLE: Not at all. We're 100 percent behind our leader Andrew Scheer. As I said in the last year Andrew has crisscross the country. We won a key by-election in Quebec just as the House rose. I think there's going to be some interesting ideas come out of this convention. And I know how even the Liberal caucus -- a lot of his MPs are not happy with Justin Trudeau's top down leadership. Countries around the world are upset. We're not even at the table at NAFTA. Taxes are going up. We're uncompetitive. We need a Conservative government and that's what we're going to get with Andrew Scheer.

IR: Thank you so much for your time.

ERIN O'TOOLE: Thank you.

IR: Erin O'Toole is the Conservative MP for Durham, Ontario. He joined us from Halifax where he is attending the party's convention. My next two guests have both been high ranking conservatives. Stockwell Day is a former leader of the Canadian Alliance and held senior cabinet posts under Prime Minister Stephen Harper. He's in Kelowna, B.C.. And Steven Fletcher also served in Stephen Harper's cabinet. He is now an Independent MLA in Manitoba who is at the Conservative Party convention and joins us from Halifax. Hello to you both.

STEVEN FLETCHER: Good morning.

STOCKWELL DAY: Good to be with you.

IR: Steven Fletcher what do you think of Erin O'Toole's take on Mr. Bernier's news?

STEVEN FLETCHER: Well I respectfully disagree. The issue seems to be a lot deeper than personal attacks that seem to be happening on Max. The fact is that there are challenges in the party, leadership challenges. These discrepancies could have easily been managed. You know I think Stephen Harper was brilliant in bringing people with diverse points of view and bringing us forward in a common cause. Stockwell Day and I, we agree on most but there are like you know -- we don't agree on medical assistance in dying, on abortion, but we move together because we respect each other. Why can't we do it under Andrew Scheer on supply management? You know it's just a breakdown in leadership.

IR: Stockwell Day what do you think about Maxime Bernier's announcement?

STOCKWELL DAY: Well there's no question this is going to cause concern. It is causing concern, I think Erin O'Toole has correctly characterized the fact that within that caucus there's a huge amount of diversity, and Steven Fletcher has just reflected on that. And I think it was a surprise to people, not that Max was upset, but the fact that he doesn't seem to be regarding political history and that history is, when a party which like the Conservatives has a split to the effect that another party could form or would form then that means some votes will be lost and that will have an affect in ridings where the election is close. That's going to be the challenge. Personally I think Max at this point, probably is a party of one. But there are always people who rise to the occasion and especially if they want to take on challenges and take let's say a disruptive approach -- Max is at that point. I can't speak to all of his motives. The irony here Ioanna, is that some of the issues he feels most passionately about will continue to move further away from his grasp -- with the Liberals for instance on the issue of immigration; by Max making a decision to go out on his own he risks seeing that left in place, if the Liberals continue to be the government after the next election.

IR: Well Steven Fletcher do you agree with Mr. Bernier that the Conservative Party has actually abandoned its values?

STEVEN FLETCHER: In many cases I would say yes. We're supposed to be a grassroots party, membership driven, and there are cases across the country where the membership is completely ignored. Candidates are not allowed to run in seats, there are barred -- close nominations, candidates are being parachuted in it. And I'm very familiar with this because that's exactly what has happened to me under this leadership, for reasons that have not been explained. Andrew has blocked me from running for the Conservative Party nomination in the riding. And that undermines the membership. What's the point of joining a party if you're not going to respect the members of that party? And yeah -- and a lot of people support looking at supply management and that has probably come to an end. A lot of people support Maxime on his position on corporate welfare that resonates really well in Winnipeg where there's a large aerospace industry but all the money seems to go to Bombardier. And you have a Quebec MP saying "that's wrong" and he's right, it is wrong. Now a lot of people agree with that. Remember the CF-18 affair that was in the riding in which I had the pleasure of representing, and Max speaks truth to power even when it's uncomfortable for him in his own riding. So yeah I would say that is true. So yes there is frustration amongst the membership. They are being ignored. Fundamental issues are not being addressed and people who want to support Andrew, like myself, are not been even given the chance to do so.

IR: Well jumping in on that, Andrew Scheer has accused Maxime Bernier of helping the Liberals with this move. Here is some of what he had to say.

SOUNDCLIP

ANDREW SCHEER: I think it's clear over the past few days and weeks that Maxime Bernier has made this choice, he has decided to helped Justin Trudeau and abandoned the best alternative to this Liberal government. It's becoming more and more clear as he communicated and put statements out that he was doing so on his own and not part of a team that had offered him every opportunity to help implement the very ideas and he claimed to care about.

IR: Steven Fletcher is Mr. Scheer right? Could he be helping the Liberals get another majority?

STEVEN FLETCHER: No. Andrew Scheer has to take responsibility for writing off all the conservative seats in Winnipeg by ignoring the membership -- the caucus is largely rural, Maxime's support comes largely from urban areas and that needs to be reflected and that you see that in the leadership vote and how that came out and that has not been embraced or respected and until it is we have a big problem in the Conservative Party. I really hope that there will be some sort of reconciliation between the two and through the membership but you know half the membership will support Maxime on principle and the other half will go with Andrew and then that's going to be a problem.

IR: And Stockwell Day you've been around for this kind of power struggle, what kind of impact does it have on a party?

STOCKWELL DAY: Well the impact is internal and also there's an impact because another choice is offered at election time. I disagree with Steven in terms of what he said he thinks half the membership will follow Max, I really doubt that. And I think some will, I don't think any MPs will, I do think Erin O'Toole's characterization was correct, I think Mr. Scheer enjoys solid support within caucus so half will not. But the problem is you don't need half to see the continuation of the Liberal regime. You don't need half the members. In many ridings you only need a few percentages. So even in the cases which Steven has rightly cited CF-18, a lot of your listeners are younger might not even remember those old battle days, but even the split that was caused by issues like that what was the result of the split? It resulted in continual re-election of a Liberal government because they would continue to go up the middle. Prime Minister Trudeau -- Justin Trudeau won the election in 2015 with about 39 percent of the vote. You get now to a place where your opposition which is running at about the same polling numbers are good, their fundraising is extremely high, and I believe this convention was their highest number of turnout in the history of the party but if you split that then Mr. Trudeau's position will be solidified. Did Max do this deliberately to help Justin Trudeau? No it was not deliberate. And I think you saw from Mr Trudeau's response he very wisely gave a gentle smile and didn't comment because when a family is having a domestic issue it's sometimes best just to step back. So I don't think -- and I'll tell you what, Steven knows too, it's a huge challenge to pull together a party in time for an election. The other irony is all these points that Max feel so passionately about they're basically indorsed, other than the supply managment one. And here you have the leader Andrew Scheer, he's facing a situation where the party itself, the grassroots members, had voted to continue to support supply management. So he is not going against the grain there. And I think Max, if I remember correctly, in leadership even lost in his own riding.

IR: Jumping back to Steven Fletcher, you talked about Max Bernier taking his support and supporters with him even from within the party. How about you? Will you join Maxime Bernier's party?

STEVEN FLETCHER: Well [Laughs] you know just to reflect on what Stock said.

IR: Actually answer that first and then you can reflect.

STEVEN FLETCHER: Okay. Well I'd like to see what is actually happening here. You know I've been -- the membership of the riding that I represent has been ignored. They haven't been allowed to choose the candidate of their choice. So that's a problem. And that's a problem with the party and that's the problem with Andrew Scheer's leadership and if we had this interview two months ago you wouldn't have heard that. But that is a problem. Now it takes a long time to put together an election [inaudible]. But then Doug Ford told us last night that he did it in five weeks.

IR: So Mr. Fletcher will you be joining his party?

STEVEN FLETCHER: I don't know what party he has, but you know what I will be representing the best interests of the people who have elected me. I'm an MLA at present and since they've, Conservatives have ridden off the seats in Winnipeg there may be a way to sort of bridge that divide so I'll investigate those kind of issues. But the big picture is not about individuals, it's not about Andrew, it's not about Max, it's not about anybody other than Canadian voters. And the problem is with caucus dynamic and so on in our system is that is reflective of the caucus and when the caucuses are more on the social conservative side or from rural areas and so on, you miss the urban feedback and there's also a tendency for the caucus to try and maintain the status quo.

IR: We have to stop it at status quo. Thank you so much for your time. Thank you both for your insight.

STEVEN FLETCHER: Thank you.

STOCKWELL DAY: Thank you.

IR: Steven Fletcher is a former Conservative cabinet minister. He is now an Independent MLA in Manitoba and he joined us from Halifax. Stockwell Day is a former leader of the Canadian Alliance. He also held cabinet posts as a Conservative under Prime Minister Stephen Harper. We asked Maxime Bernier and Andrew Scheer to come on our program, neither was available. The CBC News is next. Then, to take down some of Italy's most notorious Mafia families, Italian prosecutor Alessandra Cerreti did something her male colleagues had never thought of before, she worked with the women of the mob. Her story in our next half hour. I'm Ioanna Roumeliotis and you're listening to the summer edition of The Current.

Back To Top »

Lea Garofalo was killed by her Mafia family. Now she's the face of anti-mob protests

IR: Hello I'm Ioanna Roumeliotis and you're listening to the summer edition of The Current. Still to come, as the sex-ed debate rages in Ontario and elsewhere we're focusing in on one group of young people who often go overlooked, people with cognitive and physical disabilities. We'll hear some of their stories and ideas about how to do better when it comes to sex-ed for everyone, in half an hour. But first, The Good Mothers.

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[Music: The Godfather Theme]

IR: The theme to The Godfather, the classic movie glamorized and romanticized what it meant to be a member of the Italian mafia. And for those very reasons Alessandra Cerreti never did like it, because growing up in Sicily she knew the reality of the mob. Alessandra Cerreti grew up to be a prosecutor in Italy and she specialized in taking on the mafia, a notoriously difficult group to bring to justice. But applying lessons, she learned from Sicily's Cosa Nostra she found a way to take on the Ndrangheta, the neighbouring mob in Calabria. It was something Italian police and prosecutors had overlooked for years. The women of the mafia. Author Alex Perry has documented Alessandra Cerreti's work in his book The Good Mothers: The True Story of the Women Who Took on The World's Most Powerful Mafia. I spoke with Alex Perry in June from Guildford, England. Well take us through what exactly is the Ndrangheta?

ALEX PERRY: So the Ndrangheta, as you said, there's more than one Italian mafia. There's three big ones; one in Sicily, the Cosa Nostra, which you've heard of — that's the Godfather. There's the Camorra in Naples. The Ndrangheta is the youngest, and based in Calabria, which is the toe Italy. It's the one actually you've never heard of, and it's no coincidence that it's also by far the most powerful. It makes somewhere between 50 to 100 billion dollars a year, runs 70 per cent of the cocaine in Europe. It has an arms smuggling network. It embezzles tens of billions from the European Union and the Italian state. It has an extortion racket. And it has one of the biggest money laundering industries in the world. It launders money on its own behalf, but on the behalf of other crime syndicates around the world as well.

IR: If it's so huge how come we've never heard of it?

AP: Because it's very good at what it does. Secrecy is the secret to its success, actually. And that is based on this incredibly tight, claustrophobic cult-like family structure, which it hasn't changed since the late 19th century when it was founded. And what comes with that very tight family structure comes 19th century customs and mores really; the women are treated as they were more than a hundred years ago. So not allowed to leave the house unaccompanied, beating is routine, the girls are married off as young as 13 or 14 to seal kind of clan alliances. And if you're unfaithful, you're dead. And it will be your father, or your brother, or your son that kills you. And quite likely dissolves your body in acid to erase the family shame.

IR: Now your story focuses on the efforts of a group of dedicated prosecutors — particularly the Alessandra Cerreti. Can you tell us a bit about her?

AP: So Alessandra is a fairly extraordinary individual. She was brought up in Sicily when the Cosa Nostra was at the height of its power. And, in fact, most of her childhood was spent during a time known as La Matanza, which is when the Cosa Nostra actually fought a war with the Italian state, and more than 1500 people died. So instead of either being intimidated by the mafia — or indeed as many Sicilian Sicilians did — falling under the thrall of its myth, Alessandra rejected it from a really early age. I mean aged eight-years-old she wrote a school essay you know when you asked for that classic essay what do you want to be when you grow up? She said she wanted to be an anti-Mafia prosecutor. She wanted to put gangsters behind bars. And she has adhered to that purpose throughout her life. She's never veered.

IR: Well, we have a clip from Ms. Cerreti from a conference in 2014 about the study of Mafia women. Let's listen to that.

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ALESSANDRA CERRETI: [Speaking Italian]

TRANSLATION: Until a few years ago, there were very few women magistrates working on anti-mafia matters. There were a few women investigators who dealt with anti-mafia matters. This meant the study of the Mafia was given exclusively to men. They undervalued the contributions of the women in the mafia. I remember discussions only a few years ago with colleagues who believed that women in the Ndrangheta couldn't do any more than prepare a plate of pasta.

IR: Alex, any prosecutor has to be brave to take on the Mafia. But how unusual is it for a woman to take on the Mafia in Italy?

AP: Well, for Alessandra, there were two battles to fight, which she alludes to then. You know the first one taking on the Mafia you are taking your life in your hands. But Alessandra was also taking on the kind of ingrained misogyny in her own judiciary. The men considered the women of the Ndrangheta to be just victims, but not any use in fighting the Mafia. And it was Alessandra's mission essentially to convince them that these women were sentient beings, who were in the rooms when a lot of the discussions about what the Mafia was up to were taking place. They knew the bosses, they knew the structure, they knew about murders and killings, and bunkers, and cocaine smuggling, and arms smuggling. And because of the way they were treated, they had a real motivation and a genuine motivation to speak out.

IR: You talked earlier about how these women were oppressed. The misogyny they faced. Given all that, how willing were they to come forward to expose the inner workings of this mafia?

AP: Well, a lot of the book concerns Alessandra's attempt to coax a couple of women out. But before that, there had been at least one woman one in particular who independently had gone to the prosecutors by herself and said she wanted to testify. That was partly because she knew her husband was trying to kill her. And the only way that she could see any kind of surviving actually — the only way she could see of survival for herself and her daughter was state protection. Alessandra tried to persuade two more women to testify. And that was a long and drawn out process. Because I mean it's essentially deprogramming someone from a cult. They have to leave behind everyone and everything they've ever known. It's a huge step. And in one case in particular, Alexandria realized she had to be a mother figure to these women. She had to be their new family.

IR: And the women that you mentioned you mentioned tell us a little bit about her?

AP: She was only the second woman to ever testify against the Ndrangheta, and the first to really give comprehensive testimony. She she'd been born into a kind of mafia aristocracy on the east coast of Calabria, in a little village. She was born into violence. Her father was killed when she was eight month old. Her uncle was killed when she was about 11. A cousin was killed right in front of her. In the town where she was born, there had been 35 murders in 30 years. And you know the village where she was born actually has a population of about 400 people. So you can imagine. You know it's an extraordinary closed off place. But she was different. From the moment she was conscious essentially she rejected the mafia culture. She was always going to try and escape. The great the great irony was that she married a man who'd come from the village but had moved to Milan as her way to escape and move with him to Milan. It turned out he was marrying into her family because he was a small-time cocaine smuggler, and marrying her was a promotion for him.

IR: We hear a lot about him in your book. When she gives testimony to the Italian police, and she goes into protective custody with her daughter, Denise. What did she tell investigators? How much insight did she give them into this incredibly secretive organization?

AP: Well until that point, you have to understand the Ndrangheta was largely a secret even to the Italian state. They knew it existed, but they never understood its internal structures, or really its business models. How many people worked for it? You know how much money it made? It was all fairly vague. She gave them really detailed information — two days of testimony. Up until that point when an Ndranghetista had testified, he tended to give as little as possible in return for perhaps a reduction in sentence or something. Her attitude was completely different. She told them everything she knew, everything she'd ever heard about. And I think it was a revelation. And it was the beginning of the moment that the Italian state understood that it had a serious new mafia on its hands — far, far bigger and more powerful than it understood.

IR: And on a personal level, what impact did speaking to that extent to authorities have her and her daughter, Denise.

AP: Well, they went immediately into protective custody. But if she had suspected she was living under a death sentence before, she knew she was after that. And she understandably became incredibly paranoid. She took self-defence classes. She used to stay awake all night and sleep during the day. She kept a knife under her pillow. Once you're inside witness protection it's a very isolating experience. You get moved sometimes every few months, but definitely at least once a year. So you never really get to put down any roots or make any friends. You're not allowed to get a job because that would kind of reveal you to outsiders. Well until she died, you know for seven years, she tried to maintain this life for the sake of her daughter because that was her motivation was to give Denise a better life. In the end, the state kind of messed up. It decided her evidence they couldn't corroborate it. So then they decided the evidence was no use. And they tried to kick around out of the program.

IR: Tell us about what happens when she agrees to meet up with her husband in Milan after years of being away with him? He was in prison for a long time while she was in protective custody. And then she agrees to meet up with him. How soon after that did she go missing? Paint that picture for us.

AP: She felt that she couldn't trust the state. That she had to take matters into their own hands. And that meant what she told Denise they had two choices: They could either flee to Australia and try and start a new life. But that would require money. All she had to make peace with him. She sent a message to him saying you know let's forgive and forget and get on with our lives. The prosecutors aren't using my evidence anymore. I'm no threat to you. We have a daughter we need to bring up. And he essentially pretended for the best part of a year that he was amenable to that suggestion. And that even that the pair of them might restart their relationship. She I think it probably is always been in love with this man. So when he asked mother and daughter — his wife and his daughter — to Milan for a four day holiday, she, against her better judgment, accepted. And they went on dates. They went out for dinner. They walked around Milan. You know he took Mother and daughter to a beauty salon. And it was as though a reconciliation was taking place. And perhaps the start of a second chance really.

IR: She must have exhausted from simply hiding out for that long.

AP: She was definitely very nervy at that stage. And she used to smoke hashish fairly habitually. And her intake was definitely rising during those days. But she was maintaining all this for the sake of Denise. And she thought she could see a way to a life where they weren't on the run. They'd been on the run for 13 years by this stage. And maybe things could be better in the future. And you know so tragically it wasn't to be. He was faking. he was faking everything. Those entire four days, he was directing his crew to kill her. Every day they were trying to kill her. They kept messing up. But that's why she was there.

IR: Well, how soon after that reconciliation — that family vacation — did she go missing? And can you describe to us what he and his men were plotting?

AP: She goes missing on the last night, just before her and Denise are due to catch the night train back to Calabria. She just disappears. Denise actually guesses immediately what's happened to her mother, but also understands immediately that she can't let on. She can't let on to any of her immediate family that she knows they've just killed the mother. So she has to pretend. And for a year, Denise walks this nightmare tightrope of pretense. She's back living with her father; she's still a minor. And she has to pretend that she loves her father. She has to pretend that she agrees with her father when her father says your mother must have run off to Australia as she'd been talking about. And the entire time she's holding this terrible secret that she knows her father killed him mother.

IR: In 2013 her burnt remains were found just outside of Milan. Do you do we know what happened to her?

AP: We do. We do. I mean this story has so many unbelievable twists and turns. When Denise was living with her father, she fell in love with one of her father's crew, and it seems that that affair was genuine on both sides. Come 2012-2013 — three-and-a-half years after she disappeared — he confesses. Actually the husband strangled her in a flat with a curtain cord. And he was tasked with driving the body outside Milan to a warehouse where they spent several days incinerating it. And eventually shoveling what remained into a drain. Amazingly, after his confession, the authorities went to that drain and found more than 2,800 bone fragments. And this bracelet that's he had had given to her back when they were dating.

IR: What impact did her murder have in Italy?

AP: Initially, none. And this goes to a real darkness actually at the heart of Italy sometimes a mafia woman goes missing. It didn't make headlines. The assumption is oh, well, these are these backward families from the south. They're all always all killing each other. By the time the trial happened, however, and the full story of what she had tried to do in terms of turning against her family and her criminal upbringing, she’d become an icon. To this day, her face is on sort of posters and placards that are held up at anti-mafia demonstrations. There are bridges, and parks, and university named after her. She is she is an icon.

IR: And speaking to that shift in public awareness about these women, there was a public funeral held for her in 2013 — four years after she was killed. And Denise addressed the crowd. Have a listen to what she told those gathered in Milan.

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DENISE: [Speaking: Italian]

TRANSLATION: Today is a very difficult day for me. Moma, thank you for all you did for me. Thank you for giving me a better life. Everything that happened, everything you did, I know that you did it all for me. And I will never stop thanking you for it. Chow, mama.

IR: Alex, what kind of life does Denise lead now?

AP: She's in witness protection, so it's this horrible kind of half-life. That's you know another part of the tragedy this story is that after all this sacrifice, there's no great reward.

IR: They were certainly not alone in taking on the Mafia. Tell us about this other woman.

AP: She was — like many mafia women — an abused wife. She'd been married off or paired up when she was as young as 12 or 13. She had her first child when she was 14. By the time she was 21 or 22, she had three kids, and her mafia husband was in jail. And that's a very normal pattern. She absolutely was not a rebel. She seemed to make her peace with her life by almost pretending to be a kind of happy socialite. Although her family more or less confined to the house — on the rare occasions they did let her out, she would emerge looking quite glamorous. One of the things that she was doing when she was in the house when she was on the internet — this is actually one of the great cracks in the Italian mafia’s trying to isolate themselves from the world is the internet. She was on Facebook. She became friends with a couple of men. And other people saw that and went to her father and said you know your daughter's flirting, she's being unfaithful. Her father and her brother beat her so severely that they cracked her ribs. Then refused to let it go to a hospital, but rather got a mafia doctor to come to the house and treat her. It was actually 11 months before she was allowed to leave the house again. And then only because one of her sons had gotten into trouble with the police with his moped and she needed to go and pay a fine. When she walked into the police station, she demanded to see an officer, and she said I'm in real trouble. I think they're going to kill me. And over the next few days, she summoned up the courage actually to say that she wanted to testify, she wanted to go in witness protection, she wanted a different life.

IR: But she was killed. And what role did her mother play in her death?

AP: Well, her story is it is a Greek tragedy. One of the prosecutors that I interviewed actually describes it as that she makes a decision not to take her children with her into witness protection. Having left her children behind in the care of her mother, whom she trusted, her mother promptly used the children to blackmail her. And said You'll never see your kids again unless you come back to us. You must retract your statements. And she knew that if she went back to her family that she'd be killed. She goes back. It turns out she's miscalculated. She has 10 days 11 days before they kill her.

IR: Are you surprised that her mom was the one who lured her back?

AP: You know when you listen to these wiretaps it is jaw dropping for a mother to blackmail her daughter, and in the full knowledge that her daughter if she returns will be killed. It's monstrous. The two prosecutors both of them more or less broke down when they were telling me this story. And these are very, very tough people.

IR: It's what makes this story so nuanced because you have women like that. Then you have the women who are trying to escape. And given that women in this mafia are now willing or at least to a certain extent are willing to expose the inner workings. Has there been a shift in men's attitudes within the organization?

AP: There's very definitely been a shift. I don't think out of any great enlightenment, but more out of sort of pragmatic business concern. The betrayal by the three women that I feature in the book of the family was an earthquake. It had never happened. And it was it was almost unthinkable. But the but the Ndrangheta is nothing if not flexible and adaptable. You know it quickly worked out well we need to treat the women better. Perhaps we should also promote some of them. After all you know if the prosecutors are only going after the men that would be kind of clever. But the legacy actually of these three women is that the Ndrangheta is still shaken. The events that we're talking about only happened pretty recently. Their result was to expose this very secret, very powerful mafia to the world really for the first time. And the appalling kind of murderous misogyny that it employs now in 21st century Europe.

IR: What impact has the evidence these women provided to authorities had on the Ndrangheta’s criminal activities?

AP: The most powerful family actually did fall as a result of this evidence. It was completely wrapped up. Sixty four members of that family in jail, and 260 million euros confiscated — including two soccer teams. But when one family falls, another moves in and takes its place. When one business becomes too hot, another business is dreamt up. I mean the latest thing that's come to light in a court case in London actually is the Ndrangheta’s new growth businesses is smuggling wine, which is kind of clever in a way because it's a lot more innocent. It's a lot less controversial. All they're doing is avoiding tax. The point is they're doing it on such an enormous scale that it's still a very profitable business. First and foremost, that this organization that was so secret and so hidden for so long is now exposed to the world. The Italians are very alive to it. And that awareness is creeping out across the world. Now I know in Canada you guys have been aware for it for a while, you've had your own Ndrangheta mob war over there. But the FBI is definitely taking interest. The Ndrangheta is all over the big volume cocaine shipments across the east coast. In Europe there's an increasing awareness there was a massive bust in Germany earlier this year. The U.K. I have to say my home country is perhaps the slowest to catch up. And that's a real tragedy because the Ndrangheta launders hundreds of billions of years through the city of London. And that's a real flaw in the fight against the Ndrangheta if the financial engine is still running.

IR: How have the deaths resonated with Italians?

AP: You know I think they resonated very powerfully with Italian women. And I don't think their iconography will ever go away. It felt at the time in 2012-2013 that it happened like a sea change, and it has sustained since. Every month now there are mass anti-mafia demonstrations across Italy. You also sense a response from the more intelligent ends of the mafia that they have to leave that kind of old-style, brutish, sometimes kind of almost romantic legend of you know 19th century mafia behind. It's time to ditch that. What you do see is them becoming much more sophisticated in the financial markets. And that's perhaps where the new fight against them lies.

IR: Alex, It was fascinating talking to you. Thank you so much for your time.

AP: Thank you so much for having me.

IR: Alex Perry is the author of The Good Mothers: The True Story of the Women Who Took on the World's Most Powerful Mafia. I spoke with him in June. He was in Guildford, England. Coming up, the birds, the bees, and disabilities. For young people with cognitive and physical disabilities sex-ed can be too little too late or not at all. How to change that and have that all important talk in our next half hour. I'm Ioanna Roumeliotis and you're listening to the summer edition of The Current.

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'I have sex. Get over it': Disability activists call for sex education

IR: I'm Ioanna Roumeliotis and you're listening to the summer edition of The Current.

SOUNDCLIP

People with disabilities don't have the opportunity to learn about sexual health, until their mid-20s. There are studies showing that we tune it out in high school and don't really learn it until later on in life because we don't think the curriculum applies to us. So I think there are a variety of issues specific to the lack of sexual health curriculum for students with disabilities, or these conversations that are put in many students with disabilities and women with disabilities at risk.

IR: That is Sarah from Hamilton, Ontario who has cerebral palsy; she raised the issue in response to our special call in show last year about inclusion in the classroom. The Current took Sarah's lead and explored the topic of sex-ed and people with disabilities.

SOUNDCLIP

I learned about periods, body parts. I was aware about how you make babies, like the man's penis has to go into the woman's vagina. I thought it was interesting and got me more curiouser and curiouser.

IR: That's 24 year old Jessica Coole, she's sitting with her mother Michelle Morgan-Coole, at home in New Minas, Nova Scotia. And she's talking about the most awkward topic you could ever broach with a parent, sex. Jessica has a cognitive disability and her mom says that makes the conversation difficult for her. The Current's producer Mary Catherine McIntosh visited them. Here they are beginning with Jessica.

SOUNDCLIP

JESSICA COOLE: Well I thought it was gross. At first I saw diagrams and demonstrations and I think “Hmm, that's interesting.” I'm like “how do they do all this? Why is it important?”

MICHELLE MORGAN-COOLE: I'm trying to remember with both my daughters. I know in middle school I really went looking for information about sex for Jessica in particular but her sister as well. It was very difficult. I went through the middle school the guidance department to try to find something that would be more tailored to Jessica's understanding and was unable to find anything. So we just talked about it at home, tried to keep it to her level. I tell her that it's through a special relationship that I hope both her and her sister would wait until they had sort of a committed partner. Of course the problem with that is anytime you with somebody else you do believe usually it's a committed relationship, no matter how long it's been.

JESSICA COOLE: I had a boyfriend once. His name was Carson and him and I go on dates once a week and we share a meal together. We do things together. He comes over. I come over. It was 50/50.

MARY-CATHERINE MCINTOSH: And how did it end?

JESSICA COOLE: It was sex in the bedroom. Well I was laying on the bed with Carson and he was on one side of me, I was on one side of him and were like laying on top of each other. And he said “oh, it feels good.” And the assistant has to a door and said “that's got to stop right now.”

MARY-CATHERINE MCINTOSH: And what were you feeling?

JESSICA COOLE: Oh I was like “Uh-oh I am in trouble.”

MICHELLE MORGAN-COOLE: My take on what happened was that Jessica and her boyfriend, who was challenged, pushed a little bit too far into that area and it got uncomfortable for both of them. And unfortunately they've been friends since they were little. It actually ended, not just the boyfriend girlfriend, but actually their friendship. So I told Jess afterwards that when we push into a relationship or where part of it that we're not ready for, Sometimes bad things can happen. So I'm hoping she might have learned something from that.

JESSICA COOLE: I was worried that I was going to get pregnant.

MICHELLE MORGAN-COOLE: Well we've given Jessica various reasons for abstaining from sex right now, one of them being the fact that if she got pregnant she couldn't take care of a baby. Also the fact that you have to learn to be a friend before you can get into an intimate relationship. But it's something that Jessica's certainly been interested in over the years. And as long as she keeps telling me what's going on, which I really appreciate, I can sort of help guide her.

JESSICA COOLE: Well makes me wonder saying “Is she really serious? Is she is she trying to really protect me?” and all that. Like I know moms are good. But I find that when I hear her response it makes me want to go “oh my! What is she thinking?” and all that stuff.

MARY-CATHERINE MCINTOSH: Why “oh my”?

JESSICA COOLE: Because I thought she was- I thought she was trying to tell a point here that I should have done something right in the first place, instead of doing what I was doing.

MICHELLE MORGAN-COOLE: I used to say, when people would say to me “Well what are you going to do when she's 40?” And I would say “well if my five year old wanted to have sex and I've let that happen Children's Aid would rightly be at my door”. And if she's emotionally at that level and I still sort of feel that way but less so, it is a struggle. And how will I feel next week next year. I don't know. It's an adventure for both of us.

MARY-CATHERINE MCINTOSH: So in terms of romance, what do you want in your life?

JESSICA COOLE: Well...

MICHELLE MORGAN-COOLE: Jessica, you know what romance is? No. You’ve got to ask if you don't know.

JESSICA COOLE: What's romance?

MICHELLE MORGAN-COOLE: I think of romance is sort of when you have a boyfriend or girlfriend and you go out and you do things together and spend time together, and you really like one another in the feeling that gives you.

JESSICA COOLE: Well I want a guy who has a good sense of humor, fun to hang around with, a guy that will be challenging, a guy that's easy going. I like all the exceptions from the guy.

MARY-CATHERINE MCINTOSH: Do you think about guys a lot?

JESSICA COOLE: Oh! I've been thinking about them saying “I wish I could go find the guy”.

MICHELLE MORGAN-COOLE: She's out on her own a lot. And one of the things we've been working on is to try to get those red flag moments that you might have if you are in the community and someone starts talking to us. Jessica had an experience on the bus one day when someone started talking to her and told her she was cute. And afterward she said to me “Well Mom I am cute. I try hard to be cute.” And I said “yeas, that's great”. But we sort of have to think about if it all makes sense. And so we've used the circles program for years which sort of teaches about strangers and acquaintances and friends and what's appropriate for touch talk and trust. The problem is Jessica is really good at it she can tell you anybody, what circle they are in. But in the moment she has trouble applying it.

JESSOCA COOLE: I find that whenever a stranger comes up to me or wants me to go out with him, I find that I have red flags at that very moment saying “uh-oh! I should do something at this moment. What should I do?”

MICHELLE MORGAN-COOLE: I do want to protect her. No. I know I can't lock you in a box. But when you try to mix all that together; yes it's not easy and it's not fun. It is hard to talk about.

JESSICA COOLE: Thanks mom for saying you'll lock me in a box.

[Laughter]

MICHELLE MORGAN-COOLE: I said I wouldn't lock you in a box.

JESSICA COOLE: But you sound like it for a minute.

IR: That was Michelle Morgan-Coole and her 24 year old daughter Jessica Coole, who has a cognitive disability. Talking about sex may not always be easy but for people with different cognitive and physical abilities just finding good sex-ed information can be virtually impossible. Anna Maria Tremonti spoke with two people who want to change all that. Here is her conversation with Kaleigh Trace who tours high schools and universities speaking about sex and disability. And Andrew Gurza who has a podcast called Disability After Dark.

AMT: Kaleigh, as you were listening to them and Jessica talks about getting curiouser and curiouser about sex, do you remember that point in your life?

KALEIGH TRACE: Yeah I mean Jessica and I have different disabilities and our experiences are going to be different but I felt so much empathy hearing her confusion around what this thing is and the total lack of information. And I feel a lot of empathy for Michelle too, because it is really hard to find resources to help explain that stuff.

AMT: And Andrew what were you thinking exactly the thing.

ANDREW GURZA: Exactly the same. I thought it was so hard because the daughter was saying she wants to break out. She wants to try all the things. She wants to do all this and her mom was saying: “I'm scared. I don't know how to support my daughter.” And I just I felt a lot of empathy for both.

AMT: What was missing from sex education for you, Kaleigh?

KALEIGH TRACE: Personally I didn't get any sex education from my education system at least. When I was a student, which was not long ago, sex ed was delivered in gym class, and as a disabled kid I wasn't part of gym class. So I didn't really get any, aside from that which my parents taught me.

AMT: And so because you weren't in gym class and so did you feel you were missing out? Did you feel that somehow like you were just treated differently on that front?

KALEIGH TRACE: Yes. I mean it's very confusing I think for all kids regardless of their abilities to figure out how sex works. And then the messages that we do get be it from caregivers or educational institutions or most often our peers is really centered around normative bodies. So like you will get an erection or you will produce lubricant, which are not the words that teens use, but that's the idea. And bodies don't all work the same. So if you know that your body will operate differently, it's really hard to understand even what to expect of sexuality.

AMT: And you may not know right away how differently your body will react.

KALEIGH TRACE: Ah hmm. Yes.

AMT: Andrew, do you want to jump into that?

ANDREW GURZA: I got sex ed in grade 9. Grade 9 and 10 and again it was it was geared toward straight able bodied teens. And so you learn about having babies. You learn about erections. You learn about all of these things. And for me a young queer person with a disability I was looking at all this stuff going “none of this applies to me. None of this is relevant to my life.” So I remember in grade 9 in the first semester of health class, I flunked it because I just didn't see- I didn't understand why I was learning this and why I had to learn this, if none of this was going to be happening to me, you know. And so I just didn't - I never connected with sex ed when I was being taught it in grade 9.

AMT: Why do you think her experience was left out, Andrew?

ANDREW GURZA: I think it's I think a lot of people with disabilities their experiences in sexual health they're left out because we don't - even in 2017 - we don't know how to talk about sex and disability properly, honestly, frankly and it is still a taboo. I do so many talk and so much work. When I go give the talk, there's a shock value of like: “Oh! Let's talk about sex and disability. Wow! It's a big shock”, when really those of us who live with it are like there's nothing shocking about it. I just want to tell my experiences. I think it's missing because the curriculum has no idea how to incorporate that in an inclusive way that values the disabled body and values the disabled experience.

AMT: Kaleigh, what were the consequences of the missing information for you as you became sexually active?

KALEIGH TRACE: Well we all have different experiences as people with disabilities. Disability is such a broad spectrum. For me, in my disability I can access most spaces. I walk with a cane but in a lot of ways my body does fit into normative ideas. And for a lot of my teenage hood I was able to just get by and pretend to be normal and do my best to fit in. And then it wasn't until I was a little bit older and more politicized about what it means to be a person with a disability, and why that's a valuable identity, that I was like “oh wait! I don't need to try to perform in this particular way, and I can be just as valuable and desirable because I'm disabled and not despite of being disabled.”

AMT: But that was a message you had to give yourself. No one was giving you that much.

KALEIGH TRACE: No no no no no. Those messages don't exist. Like what Andrea had said about how the curriculum isn't ready for understanding sex and disability. I would just say applies just like society as a whole. People do not know how to understand disabled bodies as desirable and people with disabilities as sexually valid.

AMT: Andrew let's talk a little bit about that because that's exactly what you discuss in your podcast. First of all, why don't you start the podcast? How did it come to be?

ANDREW GURZA: I've been doing this work as a freelancer now for I want to say six years. I decided that I'm a queer disabled person, six years ago. I'm still I don't see myself in a spectrum and I'm tired of that. So I just started doing thing. Hey let's talk about it. Let's write about it. I started writing for Huffington Post years and years ago. And then I realized that a podcast for me is a really accessible medium because it doesn't require writing. It doesn't require any kind of a lot of physical labor, just requires my voice which I'm lucky enough to be able to use. And I decided that I really wanted to talk about it and I wanted to see if it was a conversation people wanted to engage in. And what I found was that wow people really do. People are clamoring for this information because we don't have it. Because when I give a talk at universities and call when I go do this stuff, I am with the same questions almost every time: “How do you have sex? Can you have sex? It's actually impossible for you? What kind of positions do you like?” They want to know all these things. I think if we taught them that or at least started the conversation at a much younger age, showing them look: This is somebody who is a wheelchair user. This is somebody who uses a cane. This is somebody with a cognitive or intellectual disability. Here's how they navigate the world, 14 year old, 15 year old, here so it is. Their viewpoints would change because they're taught that at a much younger age.

KALEIGH TRACE: Can I just jump in and add something to what Andrew said?

AMT: Sure.

KALEIGH TRACE: I also think we have a very, in all sex education and just socially in the broader world, our idea of sex is often that a penis penetrates a vagina, or to include people who are LGBTQ, that there is like some kind of penetration of some kind of orifice, which is such a limited idea of how bodies can come together. And I think it's slowly beginning to change to involve sex is like erotic pleasurable acts that don't necessarily mean putting things in things. Then bis would be included in a more broad sense from the very beginning. So I think our entire notions of what is sexy and what sex is need to start slowly shifting. It is a really big goal but I think it's fun that people in sex education are working on across Canada and the United States. And I do feel hopeful despite all the negative things we've said.

AMT: What do you think Andrew?

ANDREW GURZA: I agree. I think disability allows you to change the narrative so the idea penetration, to be quite frank, for me is not possible. So my body doesn't do that. So I had to learn how to change the narrative to find what was sexy for me. And so we if we look at the sex education outside of penetration, disability allows you to look at sex in a whole different way, change the idea of what is erotic, change the idea of touch, change the idea of all those things because disability has forced me - as a wheelchair user and I sort of need a lot of assistance in my day to day – even to just access sex, I need my partner to be really well versed in what I require. But that required communication. So I think sex-ed right now is a bunch of diagrams and pictures from years ago that are just the basics, when we really look at sex, especially with in relation to disability it's so much more complex.

AMT: You have also made points in your podcast that it logistically it can be difficult as well. You might need an attendant…

ANDREW GURZA: For me to have sex I need to be taken out of my chair, put on wherever we're doing that. And I need support. So you need to say to your attendant like “I need to get out of my chair, I need to get undressed.” I usually say this to the person that I'm having sex with. I try. I teach them what to do and say if we're going to do this, this is part of what I require. But it's not an easy conversation because we think - when we think of sex - we think of usually porn, or what we see on TV. And so it's quick. You're just supposed to know what to do. And there's no discussion. When you're disabled that can't- That isn't accessible. You have to talk about it. And sometimes I don't want to but if I'm going to have sex safely and probably for myself I have to. I need help to get out of my chair, put in the bed, undressed redressed, sometimes repositioned, sometimes help with the bathroom all during it. But it requires a lot of conversation that I don't think many of us are ready to have. When I engaged with a partner and say “Hey, before we do this I want to have like a 20 minute conversation laying out what is required”. They [unintelligible] because it's not something we're ready for. Sex is supposed to be innate.

AMT: And spontaneous.

ANDREW GURZA: And with disability that just often isn't. But there can be some fun in that communication building.

AMT: What do you think Kaleigh?

KALEIGH TRACE: Well I guess I think that, like what Andrea has just described like heating assistance and wanting to talk first about how the sex is going to go, I actually don't think that should be specific to people whose bodies are different. Right. Like I know that I've never- I've been disabled since I was a kid. So all the kinds of sex I've had have been as a disabled person but I can't- Like I think it would be bizarre that two people should get together if they don't know each other and have sex in some way without at least talking about like what feels good. And actually that is how sex most often goes. I think we don't often talk about it like “this is what I want. This is what would feel good. This is how I'd like to proceed”. But wouldn't the worlds and sex be so much more exciting if it was normalized to have conversations about how we want to do it before we do it.

AMT: Well I mean you're hitting on something else and that is the assumption by those who do not live with a cognitive or physical disability, that those who do are somehow a sexual or non-sexual and I mean that's part of the problem right?

KALEIGH TRACE: Yes that's a huge part of the problem and I think a big part of why sex doesn't happen.

AMT: I'm wondering too how this goes when you talk to doctors about sex? Do you get the support you need? [Kaleigh and Andrew laugh]

KALEIGH TRACE: Do you want to go for a….

AMT: [Laughs] There's my answer, but yes. Go ahead.

ANDREW GURZA: So, funny story. Really quick. I went to the doctor last year for an STI test. I hadn't been tested in a while. So I was like “How do I do this”. I decided to go to my local ER because they thought if they have to do a bigger test take me out of my chair do something, do you know swabs or whatever it is they have to do. They have everything there. It is the ER. They'll have everything. So I walk to the ER and I say: “Hi. I would like to have an STI test.” And the nurse said - she looked me up and down and said: “Why are you here for that? Was this kind of game to do?” I said “I [unintelligible] because I'm sexually active and I'd like to have a test please.” A couple hours later the doctor came and saw me and he says “You can just go to your GP for that.” And I said “Actually my GP’s office is not physically accessible to me. I can't get out of my chair in there. That's why I'm here.” And then when it came time for testing they were going to do a needle and a urine. But they didn't know how to do that for me. The nurses didn't know how to take my blood and didn't know how to draw urine to do the test. I told them what to do and they figured it out. But I just thought this is not how testing should go. This is not how people with disability should be treated when they're trying to get tested. It should be accessible and the fact that in so many places is not accessible, speaks to a huge problem with how we see people with disabilities.

AMT: Kaliegh, what's your experience?

KALEIGH TRACE: Well I think the health care practitioners have such a unique opportunity to talk to disabled people about our bodies because that's what they're doing. Like I've been in the health care system since I was nine, with medical professionals like touching my genitals, talking to me about them since I was a small kid. And in that experience nobody ever mentioned that like not only is this a place where medical procedures will happen, but it's also where sex happens, and it could feel good. And I find it so shocking that I was taught about my urethra but not like a clitoris. You know. They're beside each other. So I feel disappointed that the health care system hasn't better aligned with the responsibility of teaching about sex education.

AMT: So what needs to change? What would you like to see happen? Is there a way to take the things that you're both pointing to and actually see some improvement?

KALEIGH TRACE: Yes. I mean I think that sex ed is actually changing right now in ways that are quite hopeful, in particular Action Canada which is a national network just put out a book called Beyond the Basics about how to teach sex ed that's a really inclusive and exciting. I think that with that I wish that healthcare practitioners had more exposure to ideas about disability politics and how ableism works. Instead of just getting fed ideas that disability needs to be cured, that instead of people with disabilities were understood as complete humans that don't actually need to be fixed at all times.

ANDREW GURZA: Yes, the biggest issue in both of these spears, in the educational system and the medical system is ableism. We are afraid to talk about. It is very well meaning. We all mean well. We don't want to offend anybody but when we don't include or we don't talk about it, that is ableism. And ableism is just really discrimination against people with disabilities, but also it breeds a more wider misunderstanding and doctors don't understand because they've not had enough exposure. The educational system does not understand because they haven't had enough exposure. So we need to bring people like myself and Kaleigh and people who do this consulting work in to come and talk to schools and to doctors, and say “look here's what I think you need to know. I'm only sharing my experience but maybe now we can widen this together.”

AMT: Okay. It's important to hear your voices, thank you both.

ANDREW GURZA: Thank you.

KALEIGH TRACE: Thanks for having us.

IR: That was Anna Maria Tremonti's conversation with Kaleigh Trace a sex educator who has a spinal cord injury. And Andrew Gurza, the creator of the podcast Disability After Dark, who has cerebral palsy. Shaniff Ismail is a professor and associate chair in rehabilitation at the Department of Occupational Therapy at the University of Alberta. With 20 years working in this field he consults widely on how healthcare workers approach sex and disability. He also spoke with Anna Maria.

AMT: Why aren't young people with disabilities getting the sex education they need?

SHANIFF ISMAIL: Well there's a lot of issues. I mean the biggest thing is the stigma. What we find is parents for example are uncomfortable. And on top of that as I think was Kaleigh who described how she didn't take gym class so she didn't get sex education. I did a large study that was funded by the Canadian Council for learning and my whole study was looking at sex education guidelines for children with disabilities. And I did focus groups with various groups, for example individuals that cerebral palsy just like Andrew, spinal cord injury just like Kaleigh, burns survivors, hearing impairment, visual impairment, so I did a whole bunch of different cohorts. And each one of them talked about how you know sex education where they were systematically sexualized. So they were removed from the classroom. Their parents still the school system “I don't want my child to have sex education.” What's also interesting is when they did get sex education it was very generic. And at the same time some teachers or educators would come in and say “hey and on top of that somebody with cerebral palsy trying to be inclusive.” But what that did it was shined a big beacon on this individual with a disability and that made them feel very uncomfortable. What generically I found was the Individuals with Disabilities would like to have information on generally how sexuality is affected when you have a disability. But then getting additional information separate to the classroom that's pertaining to their own condition or illness or disability.

AMT: So you're saying well the parents sometimes ask for them to be excluded, why is that?

SHANIFF ISMAIL: Well I think a lot of times it's the old adage if you show candy to a baby they want to have candy sort of thing. I think Jessica's mother, Michelle she actually was wonderful. I mean that's very refreshing to see. But generally what you find is parents are very self-conscious and they feel that you know it's hard enough for their children to go through life with a disability, etc. And then this there's this other thing that you know if they're told about it they'll want to do it and they are excluded from that.

AMT: And so what problems arise from not having sex education?

SHANIFF ISMAIL: Well you know there's two areas. When you talk about disability you can talk about physical disability and intellectual or cognitive disability and the issues are so different. What I find with children with physical disabilities the big issue is they tend to self-limit. They tend to avoid sexuality and even though they want the information, they don't have the same experiences or opportunities that able bodied children how. For example if you think about where you learned about sex it might be you know fooling around in your basement with you know somebody who came over or you know at a party or whatever. Children with physical disabilities don't have that same opportunity so their understanding of sexuality is limited. Then you have the other side where you have children who have cognitive or intellectual disabilities. And on top of that a lot of times there's mental illness that goes along with the cognitive impairment and that makes it even more difficult. But in a lot of cases these children don't self-limit. So when they're curious or they have an urge they'll act out on it and suddenly what will happen is there is you know an uproar. The parents are upset or the teachers are upset and said “This child is doing something that's inappropriate, sexual inappropriate behavior”. So suddenly you there's all these programs that are put in place to control or limit the behavior. I remember one case where this one child was touching himself. He had I think autism and he was touching himself in class and the teachers and everybody were really upset. What they did was start to extinguish the behavior using a very behavioral approach. They act every time he touched himself they would get mad at him. They would stop him. They put tighter belts in his pants so he wouldn't be able to put his hands into his pants et cetera et cetera. And through constant watching and monitoring they stopped the behavior. But what's interesting is the same child start to have other behaviors come up. He was showing depressive signs, anxiety, aggressive behavior. He even punched a couple of other kids. And it was interesting because when I was brought in I was talking to the principal. And it just came up and I said “What would you rather have this child do, punch other children or touch himself?” And it seemed like there was almost more comfort with the child being aggressive to another child rather than touching themselves. So again this whole attitude about sexuality being something that's taboo, you shouldn't talk about it. And it's uncomfortable. It really limits what we can do with these children.

AMT: How was it resolved?

SHANIFF ISMAIL: Well again with this child I was called in and I wasn't called back then again. Let's just say that I am not sure what happened with this child. But another child that I worked with, an adolescent, he again had some very strong cognitive challenges as well as autism. And with this child what happened was he actually did some inappropriate behaviors for example he touched other girls in his class, a relative - a female relative, as well as he was going online stealing the laptop and going online and doing different things looking at porn et cetera. So what we did with this child is we put him actually on a masturbation schedule. Because what we looked at is what is appropriate sexual expression for him what would you allow him to express his sexuality. And there are certain things that you know, like what should a 14 year old be doing? And with him what we did was we put him on a masturbation schedule. So basically before he left for school he had to masturbate and when he got home he had to go to his room and masturbate. After that he could do whatever he wants. He also wanted to have a girlfriend but his functioning was not high enough to have a girlfriend. So what we did was we actually created sort of a fictitious girlfriend where he actually went online and he actually just typed and kept a journal about his encounters with this young lady or with his girlfriend and he had some safe people that he would share his stories with, the occupational therapist, the teacher's assistant et cetera. There are several people that he shared and they would review his journaling and you know give feedback on is this appropriate - Is this not. Like is it really appropriate to have sex with somebody when you're 14 and you've only met them for a couple weeks? And then those kinds of things. And then what we found with him is slowly and surely his journaling became more appropriate more in line with what we would see as normative behavior. There was also quite a lot of changes in terms of his inappropriate sexual behaviors. They stopped once we started on the schedule before and after school. It was amazing what are the difference in his behaviors.

AMT: In your work come. You also meet parents who help their disabled children get what they need. What kind of arrangements have you seen?

SHANIFF ISMAIL: Well there's lots of different arrangements. You see parents being open and upfront with sexuality and knowing that this is something that's within the child's - that could be part of the child's life or the adolescence life and they make changes. They actually are proactive about it and they don't just look at sexuality as a harm reduction approach perspective where you need to protect your child. You need to make sure that they don't you know getting a get pregnant or get an SDI or anything like that. But actually look at sexuality as something positive and something that could allow them to have an increased quality of life. I think of one example where we had this mom who had a daughter who had cerebral palsy and this daughter was about 16. Intellectually she was very bright but physically she required 24/7 care. She was very physically disabled but she was very interested in sex and wanted to have sex. But again opportunity was very limited. So what this mother did. She knew another mom who also had a son who was approximately the same age who had cerebral palsy and also was very physically challenged but intellectually was very with it. And basically what happened was the mums got the kids together and because of their physical limitations they actually had them in a hot tub.

AMT: How many parents would be willing to do that in your experience?

SHANIFF ISMAIL: Very few. I think, as Kaleigh was saying, things are changing. We are seeing some you know more open perspective on sexuality. But again when it comes to disability people are very guarded and it's very hard.

AMT: But it's interesting because what you're really talking about again there is communication and those mothers were in communication with their children. And so it might sound like a leap as you tell the story but it was a process.

SHANIFF ISMAIL: Oh it was.

AMT: And that's kind of where you're coming from, right, that that communication has to happen on some level so that people are seen in the fullness of what they have to offer.

SHANIFF ISMAIL: And you know one of the things that I'm finding, my initial work was all around physical disability, now I'm trying to focus in on more of the cognitive intellectual impairments and what I've found is the biggest issue is the whole issue of consent. If a child or an adolescent or an individual with a disability is found to not be able to give consent for sexual activity, then basically any sort of activity is considered assault or abuse. So how do you determine consent? It's usually around their basic understanding of sexuality like intercourse, babies, how babies are made, etc. but then also the context in which this activity occurs. So if someone says “well you only have sex with someone you're married with or so when you are in a relationship etc. etc.” then they have a pretty good understanding and then the final thing you want to look at is do they understand the consequences of sexual activities. Not only the negatives for example you get an SDI, be a victim of sexual assault or abuse or get pregnant, but also the positive aspects that if you have sex it might feel good. It might help you develop a bond with somebody all of those kinds of things.

AMT: And when we talk about pregnancy I mean how many health professionals offer young women with some kind of a disability birth control.

SHANIFF ISMAIL: Very few and even when it comes to physicians, you know, even though it's part of their responsibility, the first thing that comes across is again the capacity of the individual to understand the consequences of behaviors. So they're saying “well should I be giving birth control or not.” So they sort of wait for the parent or the guardian. But a lot of times these individuals have the capacity but they're not offered the choice.

AMT: How many years have you been working in this field?

SHANIFF ISMAIL: Oh probably about 20 years or more.

AMT: Do you see a change?

SHANIFF ISMAIL: Oh definitely I'm seeing a lot of changes. The first thing is we're seeing a lot more health care programs including sexuality as part of their curriculum that's for everybody. But then at the same time they are putting in you know as it relates to illness or disability, so that's helpful. I've actually been called in at the University of Manitoba, as well as University of British Columbia, to actually help with their sexuality programs. Interestingly I've been asked to go to Singapore to help develop their sexuality curriculum. So it is changing.

AMT: It's interesting because Andrew's got a podcast in one of the reasons why we're even talking about this today is because a young woman named Sarah called in and said this is missing in education so people are finding their voices.

SHANIFF ISMAIL: Most definitely.

AMT: Thanks for speaking with me.

SHANIFF ISMAIL: You're welcome.

IR: Shaniff Ismail is a professor and associate chair in rehabilitation in the Department of Occupational Therapy at the University of Alberta. He was speaking with Anna Maria Tremonti in October. That's our program for today. Stay tuned to Radio 1 for q. Montreal based musician Pierre Kwenders is on the show. And remember you can always take The Current with you to go on the CBC Radio app. It lets you browse through past episodes of our show and start listening in just a few seconds. Hear the day's top stories. Even make your own playlist of your favorite stuff to listen to later. It's free from the App Store or Google Play. My time is up behind the mic on the summer edition of The Current and it has been great. Connie Walker will be in this chair next week. I'm Ioanna Roumeliotis. Thanks for listening and have a good weekend.

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Friday August 24, 2018 Full Episode Transcript

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