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The Current Transcript for July 26, 2018

Host: Megan Williams

STORIES FROM THIS EPISODE

Prologue

[Music: Theme]

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I took my baby and ran towards the sea. While my wife, I didn't know what happened. I think she burned herself here.

MEGAN WILLIAMS: Scorching summer heat is a deadly driving force behind the fires in Greece. And heat is proving deadly all around the world. Coming right up, we look at how rising temperatures affect the planet and the human body. And then...

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The fact that he can keep himself together in such a brutal system. I think if we could even emulate even just a small bit of that, we would all really be better human beings.

MW: Nearly five years after his death Nelson Mandela continues to inspire people around the world. Now his granddaughter remembers the leader of South Africa's anti-apartheid movement and what his decades of imprisonment did to his family. That's later in our show. And in our last half hour...

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I've always had this discomfort with the term dying with dignity as it relates to medical assistance in dying. Because in my view it has slowly become this implication that there is only one way to die with dignity.

MW: Disability rights advocate Ing Wong Ward has never backed away from a challenge. And as she battles incurable cancer there is one thing she knows about her future. Her death will not be medically assisted. Stay tuned to hear her conversation with Anna Maria Tremonti. I'm Megan Williams and you're listening to the summer edition of The Current.

Canada needs to brace for wave of eco-refugees in future, climate scientist says

Guests: Marcus Franberg, Blair Feltmate, Glen Kenny

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The heat is not just uncomfortable. It is now extremely dangerous. At Tokyo's emergency dispatch centre the calls are coming thick and fast. [Ambulance Siren] The ambulance crews are struggling to keep up as across Japan more than 30,000 people have now been hospitalized with heat stroke or heat exhaustion.

MW: The blistering record high temperatures in Japan are also proving deadly. So far eighty deaths have been attributed to the heat. Japan's Meteorological Agency has warned the heat wave could go on until early August. And Japan isn't alone. Earlier this month Montreal Public Health officials attributed up to 53 deaths to a recent heat wave in southern Quebec. And in India...

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In the foothills of the Himalayas, the town of Shimla has run out of water. Residents say it's like living in an oven where they can't cook, let alone shower.

MW: According to the Indian government thirty five hundred people have died from the heat over the past three years. The death toll so far this year is 22. Heat records are being broken around the globe. Earlier this month the temperature hit 51.3 degrees Celsius in Algeria. It's being called the highest temperature ever reliably measured in Africa. And last month in the Middle East, a city in Oman posted the world's hottest nighttime low temperature ever recorded, 42.6 degrees. And in many places that has fuelled fires. In Greece, raging fires feeding off the heat have caused swaths of destruction and killed dozens of people. Even the edge of the Arctic Circle is baking. Sweden is going through an unprecedented heat wave. Marcus Franberg is from the northern part of the country. He's a reporter with Swedish public radio. He also raises sheep in a village of Björsjö, more than 500 kilometres north of Stockholm. That's where we've reached him. Hello.

MARCUS FRANBERG: Hello.

MW: So how hot is it now where you are in Sweden?

MARCUS FRANBERG: Last night, the temperature went to a little better. The last day we have around between 30 to 33, and I think it was maximum 34, here up north in Sweden. But in some places in the middle of Sweden and close to Stockholm, it was around 30 to 35 degrees Celsius. I suppose 85 to 95 fahrenheit. So it's very very unusual to have a long time with this extreme temperature up here in North.

MW: And how are your sheep managing in the heat?

MARCUS FRANBERG: It's a big problem because I'm standing now at my very small farm looking out. And the first harvest we took in the beginning of June, it gave I think one third of the normal harvest. And the second harvest is just now, it's totally dead. It's just yellow, gray, and brown on the fields. And I think it's no meaning to go in to take that grass because it's already dead.

MW: So are the animals able to get enough to eat?

MARCUS FRANBERG: Yeah I have split my animals. So I have in a village not far away from here, they have some fields who haven't been used for a few years so half of animals are there. And then I have them also in another place and it's fields who are protected in the middle of forest with high forest and trees around it, so the sun can't shine on the grass so there they have to eat now. But the problem is to collect hay now, in the summer time to feed the animals, in the winter that's the absolutely biggest problem.

MW: And I understand other farmers in the area are maybe not as lucky as you are to have that other option. And that they are having to slaughter some of the animals.

MARCUS FRANBERG: Yeah. I am a lucky guy I must say, because I don't have so many animals. But a friend of mine in a village, yes. I think it's a nine kilometres from here. He have more than 400 bulls and they eat a lot. And the first harvest gave him 50 percent, and the second 15 percent. And now with nothing. So when I talked to him a few days ago he say now he must find six hundred thousand kilo of hay to feed the animals in the winter. So he went to the slaughter house and talked to them, and say that we must take away a lot of animals. Sorry the slaughterhouse say, because now I don't know what to say in English, but it's a cue to the slaughterhouse.

MW: A line up.

MARCUS FRANBERG: Line up, yeah. And some of them can't take animals until March or April next year, because it's so many farmers who must take away the animals.

MW: There are also a lot of fires in the area, just very quickly, how close are you to them? And how worried are you about them?

MARCUS FRANBERG: For a few days ago it was dramatic because we have two very very big fires just south of my farm, but it was around 10 to 12 kilometres from here. But the wind turned away so it went back to over the burned area. But now we have in this area around fifty five thousand acres have been burnt. Fifty five thousand acres. And we have nine countries from the European Union who are here to help us to stop them.

MW: Well keep safe Marcus. Thanks very much for speaking with us.

MARCUS FRANBERG: Thank you.

MW: I've been speaking with Marcus Franberg who is a journalist and sheep farmer in Björsjö, Sweden. That's where we reached him. My next guest says what we're seeing now is just the beginning when it comes to extreme heat, and it's a stark reality we can no longer afford to ignore. Blair Feltmate is the head of the Intact Centre on Climate Adaptation at the University of Waterloo. And he's with me here in studio. Good morning.

BLAIR FELTMATE: Good morning.

MW: So why are we seeing this extreme heat all around the world right now?

BLAIR FELTMATE: This is effectively the manifestation of climate change inaction. This is what we've predicted through the Intergovernmental Panel on Climate Change for quite a number of years now. And forward looking we can expect a world that's hotter, wetter, and with wilder weather.

MW: Is there a maximum temperature limit on the earth in the foreseeable future?

BLAIR FELTMATE: Well there probably is in reference to the earth, nobody knows exactly what that is, but in certain locations around the world and specifically here in Canada, we've done forward projections on maximum temperatures that can be expected. For example we're sitting in southern Ontario, right now our temperature maxes out at around 37 degrees celsius, that's more or less of the top that ever occurs here. By 2040 the projections are that, we will max out at about 44 degrees celsius, so up about 6 or 7 degrees celsius. We experience right now in this region approximately 20 to 22 days per summer, where the temperature goes over 30 degrees. By 2040, so we're only talking 20 years away, that will triple. That will go to about 60 to 65 days per summer. And we experience heat waves on the order of every second year, 0.5-0.6 heat waves per year. And that's with seven days in a row where the temperature exceeds 30 degrees celsius. Going forward by 2040 that will be 2.5 heat waves per year. So the heat is coming for sure.

MW: It's coming and it's going to stay longer. Now we just heard from the sheep farmer, Marcus Franberg, in northern Sweden. And Canada is a northern country, but what areas of the world are going to be hit hardest by these increases?

BLAIR FELTMATE: In reference to changes in weather, temperature, precipitation regimes. In places that are wet disproportionately they will get wetter. In places that are hot they will get hotter. It's almost whatever the current trend in weather that you experience. What climate change does, it kind of puts it a little bit on steroids. It exacerbates the extremes that we're realising.

MW: So in Canada, what kind of changes are we going to see across the country?

BLAIR FELTMATE: Canada is going to get disproportionately warmer. Warmer in southern Canada. And the further north you go, it will become increasingly so warmer relative to baselines. We've done forward projections looking at average temperature and average precipitation regimes from 1975 to 2000, if we took that as an average, going forward on temperature we can expect increases in southern Canada by 2040 region of 2 to 3 degrees celsius on average increase in temperature. And then disproportionally warmer the further north you go in the country.

MW: Now we know that climate change is a huge propeller of migration around the world. People having to leave because of drought. Because of flooding. How will these changes in temperature affect where people will be living around the world?

BLAIR FELTMATE: We are going to see a mass migrations of eco-refugees. People that are currently in locations, that in the not too distant future, they will not be able to survive there. It will be flood zones or disproportionately hot or whatever the particular factor is that makes it uninhabitable. And we are going to see people migrating by the millions. And Canada should certainly expect that there are going to be a lot of people who want to come here, because effectively Canada is a country geographically that is second in size only to Russia. And it's empty. We have 36 million people. So the idea, and we've got a lot of resources. We've got timber, minerals, water. The idea that Canada is going to sit in isolation with all these resources while people around the world are disproportionately disenfranchised. They're not just going to sit there. They're going to be coming here in mass. And we need to be making calculations as to what numbers of people can we expect to come here? What criteria do we use to determine who gets in and who doesn't get in? And when they do come here, where are they going to go? And how do we plan on these people in reference to how they integrate into our education system, our social systems, etc?

MW: Now I've spoken with researchers in Sweden in the past who are preparing for that. For Sweden. Which is obviously a much smaller country. How prepared is Canada right now to deal with that?

BLAIR FELTMATE: I don't think we're putting nearly enough thought into the acceptance of eco-refugees. So we have to do a lot of work in this area. And I don't mean to suggest it's not that we're asleep at the switch or anything like that, but we need to do a lot more work in reference to that calculation. And fundamentally, probably the biggest mistake that governments are making right now: federally, provincially, and municipally, we have to understand that even for our own operations within our country that the weather of the past is not a predictor of the weather or the future. We have a new regime on the table and we have to accept that reality and start to plan for it and plan for it rapidly.

MW: Right. New normal. Thanks very much for coming in and speaking with me this morning.

BLAIR FELTMATE: Happy to be here.

MW: I've been speaking with Blair Feltmate who is the head of the Intact Centre on Climate Adaptation at the University of Waterloo. As we heard earlier, in many places around the world the extreme heat this summer has proved to be lethal. Along with deaths attributed to the higher temperatures, millions face the risk of heat stroke and heat exhaustion. And the concern is that if temperatures continue to rise, thanks to global change to climate change rather, the impact on human health will be even more severe. My next guest studies the human body's capacity to deal with heat stress. Glen Kenny is a professor and the director of the Human and Environmental Physiology Research Unit at the University of Ottawa. He joins me now from our Ottawa studio. Hello. Good morning.

GLEN KENNY: Good morning.

MW: As we hear about the heat waves descending on countries such as Japan, Sweden, and Greece. At what point does it become physiologically impossible for the human body to deal with these kinds of temperatures?

GLEN KENNY: I think the challenge is this trust that it's going to impose on the body and what we do know is that when we are exposed to severe heat stress conditions like we've experienced here in Canada, the body is struggling to essentially maintain a stable temperature. But you have to remember as well, that in extreme conditions we tend to for example, we expose ourselves to saunas which can be quite hot. So we have the capacity. And saunas can be up to a 100 degrees celsius. Of course it's the intensity and the duration of that exposure that matters the most.

MW: Right. As you were saying that I was thinking you know you can step out of a sauna any time, but we've just heard that heat is going to increase and it's going to prolong in time. Does the human body actually have an upper limit that it can cope with?

GLEN KENNY: We all have an upper limit and it's essentially defined by really how much sweat that our body can produce. And that really comes to be an important factor that determines how much heat we can tolerate, because that sweat that evaporates is really what cools the body. But again you have to remember different people have different capacities. And so if we think about an older adult they'll have an impaired ability to produce that sweat, and therefore to maintain a certain level of cooling. When we're exposed to the very hot conditions like we're seeing in Japan at 41 degrees celsius, in our research lab for example we've exposed people to 44 degrees celsius for prolonged periods and of course there's going to be a gradual increase in core temperature. But the body will do its utmost to defend that. And where the problem lies is that when you have people that are exposed to extreme heat waves over two, three, four, five days in this case in Japan they're talking about long periods, this is going to be the problem and it causes general physical discomfort, distress, sleep deprivation which really exacerbates many of the existing chronic health conditions that the elderly are the most vulnerable and they may have.

MW: Now I understand your lab has one of the world's only calorimeter's. And that you have subjected yourself to experiments on it. Can you tell me what that is? And what the experiments you yourself have participated in?

GLEN KENNY: Certainly. We do have this calorimeter that allows us to measure very precisely how much heat the body loses. And that's very important for the obvious reasons that you've asked me here, what's the body's physiological capacity to dissipate heat? And that's important because it's no different than if when we go out for an exercise we have a certain limit in terms of how fast we can run. While we're essentially looking at heat dissipation, there's a maximum that the body can essentially dissipate in terms of heat. So our calorimeter allows us to determine the levels of heat stress. So if you can imagine the temperature conditions or the exercise intensity levels where you began to see impairments in somebody's ability to dissipate heat. So that allows us to define very specific thresholds whether it be for exposures to different ambient conditions or exercise. So that's unique about our calorimeter. Now when you're inside a calorimeter, obviously it's an enclosed chamber, but just doing any kind of exercise. What I'll do is as a participant myself sometimes is to get that experience. Everybody has been exercising. I'm sure I've done some work outside in the heat and the first thing we start to feel is that sweating response and that becomes very profuse as you exercise or the duration of exposure becomes longer. That's our defense mechanisms. But then as the exposure becomes longer what you'll see and what I'll feel and what workers feel or elderly person in extreme heat is that stress that is associate with that. Because now you're starting to feel a bit uncomfortable and now you're struggling inside to say, oh this is a little tougher than I thought. It's like exercising a little bit too fast and you realize, oh I just don't have that capacity. Now at some point the stress level picks up, where you began to internalize, you're focusing on your body and you become less aware of your surroundings. And those are good signs that essentially are developing some confusion at times because you're not listening to the cues around you or to the commands that are coming around you. For workers that could be certainly a big problem.

MW: I mean you've experienced this yourself during the experiments. I mean do you lose awareness that you're actually in distress?

GLEN KENNY: You don't. I think the challenge is just like you focus so much on what you're feeling, you're trying to keep focused on the exposure. And so what's important here is that when you are under these situations your awareness, you don't necessarily focus on what's around you. And in situations like that, that's a real clear sign of distress at times because as you get hotter and you get into conditions where you're experiencing heat exhaustion, your mental status starts to change. You're seeing poor judgment. And you'll see in some participants and patients, they get irritable. Which is no different than what you see with people that are exposed to prolonged heat indoors. You know it's hot inside, you get more irritable. You're more fatigued. You're just generally more you know distressed.

MW: Now we hear a lot during Canadian summers about the humidex, how much does humidity play a role in this?

GLEN KENNY: Well I think that's a big factor. Even today here in Ottawa, the air temperature is not overly high but it's very very humid. Humidity by itself is a real factor in terms of affecting one's ability to lose heat, because you have to imagine the air is already saturated with moisture so if you're trying to evaporate that sweat there's not much of a capacity to do so. So a lot of that sweat is going to drip off. So you can even actually become heat stressed at a much lower air temperature when humidity’s are very high. So when you have these hot humid air masses that you know stay there for long periods of time, that becomes a real challenge.

MW: Okay well thank you very much for telling us about your experiments and for speaking with us today.

GLEN KENNY: My pleasure.

MW: I've been talking with Glen Kenny who is a professor and the director of the Human and Environmental Physiology Research Unit at the University of Ottawa. He was in our Ottawa studio. The CBC News is next. Then, the prison letters of the South African icon. I'll be speaking with Nelson Mandela's granddaughter. I'm Megan Williams and you're listening to the summer edition of The Current.

New compilation of Nelson Mandela's letters shed light on his time in prison

Guests: Zamaswazi Dlamini-Mandela, Sahm Venter

MW: Hello. I'm Megan Williams and you're listening to the summer edition of The Current.

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PRESIDENT BARACK OBAMA: Madiba's light shone so brightly, even from that narrow Robben Island cell, that in the late 70s he could inspire a young college student on the other side of the world to re-examine his own priorities. Could make me consider the small role I might play in bending the arc of the world for justice.

MW: The first black president of the United States paying homage to the first black president of South Africa. Former President Barack Obama was in Johannesburg last week to honour the legacy of Nelson Mandela or "Madiba" as he's fondly known in South Africa. The late South African president would have turned 100 this year. And just in time for that anniversary is a new book that collects hundreds of letters Mandela wrote during his 27 years as a political prisoner. The book was compiled by Sahm Venter, senior researcher at the Nelson Mandela Foundation, with a foreword by Mandela's granddaughter, Zamaswazi Dlamini-Mandela known as Swati. They both join me now from Los Angeles. Hello.

ZAMASWAZI DLAMINI-MANDELA: Hi thank you for having us.

MW: A pleasure to have you both. I want to begin with you Swati. What went through your mind as you heard Barack Obama talk about how your grandfather influenced him so many years ago?

ZAMASWAZI DLAMINI-MANDELA: Well I mean I think my grandfather has influenced a lot of people across the world. And I think obviously you know we live in a world now in which we yearn and hold on to the things that he believed in. You know the love of humanity. And the fight and the rights for people who are treated unfairly. And you know just the dignity and respect for oneself and for other people. And you know I think President Barack Obama put it very well in the sense that you know my late grandfather gives us hope in a time in which we need it.

MW: And of course because you weren't able to have contact with him when he was in prison, your relationship was through letters. What did you learn about him through those letters?

ZAMASWAZI DLAMINI-MANDELA: Well I really learned a lot from my grandmother and my mother because they were extremely instrumental in ensuring from a very young age we knew what my grandfather was doing and why he was on Robben Island and in prison. And the letters just obviously were a way in which we could communicate to him and him to us, to let us know how he was doing. And for him to find out what we were doing and how we were feeling. And also just you know for him to provide support to us as a family and for us vice versa. So you know the letters from me are just such a wonderful but also sad and painful sort of insight into his time as well as my family's sacrifices which they made towards the struggle.

MW: Well we'll talk about what's in the letter. Sahm I want to ask you first, you've co-edited several books about Nelson Mandela and his family. And you had a personal relationship with him and the family for many years. What did these letters show you about Mandela that you didn't know before?

SAHM VENTER: Megan I think really what it did was just deepen my knowledge of him. I knew that he was a very committed visionary who was prepared to sacrifice everything for freedom. What these letters do and this book does, is to take us into the prison cell with him and let us hear it in his own words at the time. So we are really getting the unplugged Nelson Mandela. Throughout almost twenty seven and a half years I think what deep and really for me was a knowledge of his commitment and of his decision which he made early on in his prison years, to keep his dignity no matter what. Against all odds to continue with his studies. To just fight the system in an extremely dignified and respectful way. Constantly just knocking away at it throughout the period.

MW: When you say unplugged you know there are a lot of details that come out through these letters. Did you get a better sense of his own personal struggle? What he was coming up against? His distance from his family and his isolation.

SAHM VENTER: Absolutely. I mean he went through some of the most horrendous periods of his life while he was in prison. His mother died in 1968. A year later his wife was detained for the longest period of her many detentions. That was for 14 months from May 1969. And in July of 1969 his eldest son was killed in a car accident, and he hadn't seen him for five years. So you can imagine what it's like for any of us to experience loss in our world now. But there he was with his comrades but that was it. He didn't have any way of being with family or attending the funerals or doing any of the rituals that are expected of him. It must have just been awful. But throughout this he just remained calm and dignified. And this is amazing to me. You know one of his comrades kept telling me that in the 18 years they were on Robben Island, he saw him lose his temper only twice.

MW: Wow. Now you mentioned his son dying, Thembi, and for me that was one of the most poignant letters in this collection, and I just want to read a little bit from it now. He's writing to Winnie, his wife, and he begins the letter my darling and he writes: I find it difficult to believe that I will never see Thembi again. On February 23 this year, he turned 24. I had seen him towards the end of July 1962, a few days after I had returned from a trip abroad. Then, he was a lusty lad of seventeen that I could never associate with death. He wore one of my trousers which was a shade too big and long for him. The incident was significant and sent me thinking. As you know he had a lot of clothing. Was particular about his dress and had no reason whatsoever for using my clothes. I was deeply touched for the emotional factors underlying his actions that were too obvious. For days, thereafter my mind and feelings were agitated to realise the psychological strains and stresses my absence from home had imposed on the children. Swati you have said that these letters are still very emotional for you to read. What hits you the most when you're reading them?

ZAMASWAZI DLAMINI-MANDELA: I think for me it is a lens to the brutality and the violence of the apartheid government of the time. And also just how families were deeply impacted and I think this is something that people perhaps forget about. So for me it was an eye opener to what the real experiences were of my mom and my aunt and my uncles as well as my grandmother because my grandfather wrote so eloquently and so beautifully to them under such difficult harsh circumstances. So I believe that the readers will really get to grasp the fullness of what the apartheid government was able to do in terms of really tearing apart family structures and families. And how my grandfather tries so hard to hold it together and parent and be a husband and a friend and a family member to you know people on the outside.

MW: Now Sahm the letters were heavily censored by officials. What topics was Nelson Mandela allowed to write about?

SAHM VENTER: Well Megan in the beginning he was only allowed to write to family and one letter every six months of 500 words. And basically he was allowed to write about so-called family matters, which actually meant he was not allowed to write about other prisoners, politics, prison conditions. You know that was it. And I think what he did was he learnt how to get by the censorship, because in the beginning it was really bad. So he knew that in order to get his letters through he had to adhere to this, especially in the beginning. Later on he was able to use sort of more coded words and write about people without them knowing. For instance he would pretend to be writing about other family members when in fact he was referring to somebody else in prison and the recipient would know through the use of nicknames etc.

MW: Right. Because he wasn't allowed to write about fellow prisoners.

SAHM VENTER: That's right.

MW: Swati during that dark period in 1969 that Sahm just mentioned your grandmother Winnie Mandela was also imprisoned for 14 months and during that time neither she nor your grandfather knew who was taking care of their children. I want to read you part of a letter Mandela wrote to your mother, Zenani, who was just 10 at the time and her sister, your aunt Zindzi. My heart bleeds as I think of her sitting in the same cell far away from home, perhaps alone and without anybody to talk to and with nothing to read. 24 hours a day longing for her little ones. It may be many months or even years before you see her again. For long you may live like orphans. Without your own home and parents. Without the natural love, affection, and protection mommy used to give you. Swati what goes through your mind when you hear that?

ZAMASWAZI DLAMINI-MANDELA: This letter from me Megan is the most difficult letter in the entire collection, because I just put myself in the position of my mom and my aunt. Myself being a mother, I think if I was unable to you know be there for my children and not knowing what is happening to them. I mean this is a time in our history when you know being a Mandela was unpopular. So you know even family relatives were constantly harassed by the police at the time. So you know from my grandmother in prison and my grandfather trying to comfort her and give her some sense of just support. You know it is hurtful and very difficult. I mean to date, my mom finds it very difficult to even go back to that time. It's something that she doesn't talk about. It's something that she refuses to even remember because she just always says that it was very very painful for her and my aunt because that's time lost. And you know a childhood that they'll never get back. Which is you know they're deeply scarred by it.

MW: The pain and the longing and the loneliness all come out in the letters. Yet what struck me also about the letters is that you get a sense from your grandfather, a kind of moral confidence, that in the end justice will prevail and he'll get out of prison and South Africa will be transformed. How do you think your grandfather held onto that hope?

ZAMASWAZI DLAMINI-MANDELA: I think he had a very deep sense of purpose which he remained and you know he stuck by. And I think that's what drove him every single day. I think he had a deep inner sense of resolve as to what he wanted to achieve and what that would take and you know if it meant giving up his life I think that's what he felt needed to be done. I mean you know it was such a wonderful insight for me to really kind of get to grasp you know what it really took for him to do what he did. I think I kind of you know always vaguely understood it but this really gave me a real sense of the man and what it takes. And I was just so taken aback and you know even more in awe of him because I really got to understand his own personal sacrifice, not just my family's but his own personal. And how he just kept it so dignified. And he was so respectful. And you know he wrote so well and he was always so you know eloquent. And you know like Sahm said early on he only apparently lost his temper twice. And I just think that it is remarkable because if I think about myself and in my own personal life, I probably lose my temper once a week. So the fact that he can keep himself together in such a brutal brutal system, I think if we could even emulate even just a small bit of that we would all really be better human beings.

MW: Now Sahm these weren't just personal letters, Mandela often wrote letters to the prison authorities demanding better conditions for his fellow prisoners. What struck you about those letters?

SAHM VENTER: Well here you see Mandela the leader, writing to other leaders. And he didn't for a moment assume as they expected most prisoners to assume that he was inferior to them in any way. He was a lawyer. He was a political activist and a leader. And he wrote to an equal. He used the correct language. He used a lot of background, of history, of rational argument to justify what he was suggesting, almost as if he was arguing sometimes in a court of law. He was absolutely determined of the correctness of his position. And you know I enjoyed quite often he would use language such as, would you be so kind as to give me x, y and z? And you know that he had been asking for that thing for a long time. And he would have said you know this is your final warning, I can't stand this anymore. But he was always always very polite. You can only imagine how frustrated he must have been. But I think that he learned to deal with those frustrations.

MW: Now often his letters went missing. I mean the prison authorities were censoring his letters, but they were also you know just making sure that some never arrived. I mean even birthday cards to his children, which he found incredibly frustrating. Why do you think he kept on writing?

SAHM VENTER: Well it was his only way of communicating. He had to. And this was the Mandela we see in this book, he was all about hope. He could not give up. And I think there's a quote in one of the letters where he said something along the lines of, to a freedom fighter hope is what a lifebelt is to a swimmer. And that refrain keeps on coming up about hope. He wrote to stay in touch with his family, and his friends, and the authorities. It was his way of being alive. And you see a lot of him harking back to some of the fun days, when he would go to the theater and sing with his friends. And beautiful letters to his wife about what they used to do together or what they could do together. You know I think what we often think about prison is that our physical freedom has been taken away, but for me what these letters show is that just how much it takes the colour out of your life. You know the joy. Everything that we take for granted is gone, and everything is grey and cold and dismal. I think he was bringing the colour back into his life and hope back into his life through these letters.

MW: That comes across so strongly. Swati to most of the world as we all know Nelson Mandela is a towering figure of social justice, but what will people learn about Nelson Mandela, the father and the grandfather, from these letters?

ZAMASWAZI DLAMINI-MANDELA: I think they'll learn just how much he sacrificed, you know his family, for what he believed in and what that took and how he was able to do that. I do think that for my family hopefully, this will be a way in which we can find some sense of peace and closure. Over time I believe of what he had to give up for what we also have and what we've been able to enjoy. I think it's important that we are reminded of his immense sacrifice and so many others. It wasn't him alone. All the other prisoners on Robben Island. And all the families. And all the women. And the people who died. And you know people whose families were torn apart because of the apartheid system and the government. So I think for me this is a stark reminder of that history. Because my grandfather said it's important for us to forgive, but it's important for us not to forget. So I think this also just kind of makes us remember, because I feel like we could so easily slip back into that place. And hopefully by reading this material people can understand, if we lose our freedom and what that might look like all over again.

MW: Have you talked about the letters with your family members?

ZAMASWAZI DLAMINI-MANDELA: I have. But most of my family members, I mean for instance like I said my mom.

MW: She won't read them.

ZAMASWAZI DLAMINI-MANDELA: She won't read them. Neither will my aunts. But you know I think for the younger generation if ever they felt they needed to get a deeper insight into who my grandfather is they certainly have. But even for them it's difficult. I didn't even finish reading the book. You know I probably read a quarter of it. And for me I felt that was enough just to get a sense of his experience and his time, because the rest of it was actually very difficult for me to get through.

MW: Now Sahm you mentioned that you know the experience of prison life draining one's life and being flooded with grey. Now you visited Mandela's former Robben Island prison cell with him in 1994. Can you describe that experience?

SAHM VENTER: Megan it was really special. He was as usual, upbeat. He sat with us, as journalists, over breakfast and told us what it was like. Went through the whole thing. There was only one time where he showed emotion. And that was when his voice cracked a little. And the last time he saw his mother. He only saw her about two or three times in prison. It was a long long journey for anyone to get to Robben Island. And he said as she turned away from the visiting room and I saw the back of him walking towards the harbor, I knew that I would never see her again. And then he took us to the limestone quarry where they had to work with pick and shovels. In the beginning you can just imagine these are lawyers, doctors, academics who had to go every day for 13 years and do hard labor. They came back with bleeding hands and blisters covered in this fine white powder. They didn't even have proper water. It was sort of brackish cold water they got from the sea to shower in. And I went with him to his prison cell. It was so small, that only him and two or three other journalists could go in at a time. And I was just struck by the fact that he was stuck in this tiny little room every day from half past three in the afternoon when the gate was locked until 5:30 in the morning. And I just thought what on earth happens then? And I asked him what did you do from half past three? And he said I read and I wrote letters.

MW: And we have this beautiful outpouring of correspondence that is now this wonderful book. Sahm what do you think the relevance of these letters is today?

SAHM VENTER: To me it shows the universality of Nelson Mandela's work, and his life, and his wisdom. And so many people as we tour the U.S. are identifying with it. And delving into it, because the world is in a place now we all know, where there's a rise of racism, sexism, xenophobia, fascism in some countries. And people are looking to this book for hope. So I think Nelson Mandela is still speaking to us very eloquently across the years. And he's saying what is important, are these values.

MW: Swati, what do you think?

ZAMASWAZI DLAMINI-MANDELA: Gosh I'm not sure if I can add on to what Sahm said. She put it so well. I think for me, I really hope that younger people are reached and have access to this book and learn more and deeper about who my grandfather was and what it took. And I think they can gain so much knowledge from how to conduct oneself I think in this world you know. The one thing that I certainly took away is how he conducted himself and how he was so consistent about his conduct in prison and in the world. And I think that really made him stand out.

MW: Thank you both so much and thank you for this lovely collection of letters.

ZAMASWAZI DLAMINI-MANDELA: Thank you Megan.

SAHM VENTER: Thanks very much Megan.

MW: Sahm Venter is the senior researcher at the Nelson Mandela Foundation. ‘Swati’ Dlamini-Mandela is a public speaker and the granddaughter of Nelson Mandela. I'm Megan Williams and you're listening to the summer edition of The Current.

'A compromised life is worth living': Why Ing Wong-Ward won't choose medically assisted death

Guest: Ing Wong Ward

MW: I'm Megan Williams and you're listening to the summer edition of The Current. Earlier this week you may have heard our documentary, One More Moment. It introduced us to Will Pegg, a B.C. man who has been diagnosed with incurable metastatic bone cancer. Will Pegg has decided that when the time comes, he will end his life with medical assistance. More than 3,700 Canadians have made that choice since it became a legal option two years ago. But not everyone who meets the criteria for an assisted death will see it as right for them. And that includes Ing Wong Ward. Ing is a former radio producer here at CBC. She's also a disability rights advocate. She got her first motorized wheelchair at the age of 3 and has used one ever since to get around, because she lives with a condition known as spinal muscular atrophy. Ing has now been diagnosed with an incurable form of colon cancer. Anna Maria Tremonti visited Ing Wong Ward in her home in Toronto in May.

SOUNDCLIP

AMT: I was looking at your Twitter page. I don't know if you know it out my heart or if you need to read it. Tell me how you describe yourself on your Twitter page?

ING WONG WARD: Ing Wong Ward associate director of the Center for Independent Living in Toronto on leave. I have to say I am on leave. Opinions are my own, unapologetically disabled and definitely not inspiring. So yes that would be me. I don't see myself as an inspiring person at all.

AMT: In fact you don't like it when people tell you you're inspiring.

ING WONG WARD: No it makes me really uncomfortable and I'm not alone in that. I think many people with disabilities I do not want to be seen as inspiring simply because we are disabled. It's become a trope. It's the first thing people say oh you're so inspiring, as opposed to getting to know me as a as an individual, as a person. You know like I like to joke. I hope you're inspired because I love shoes. I hope you're inspired by the number of books that I read or that I'm really proficient knitter. Now I hope you're inspired that I'm a loyal spouse and a good mother although the only only person who can determine if a good mother is my child. Sometimes she really gets crazy with me or is made crazy by me. So yes I don't think that that's the first thing that people should look at me simply because I am a person with a disability and say 'you so inspiring'. It's you know it says something about how we see disability in this society.

AMT: I want to talk about your health. What's the most recent update your doctors have given you?

ING WONG WARD: My health is complex. I was diagnosed with colon cancer over a year ago. My cancer is inoperable. I've had twenty eight rounds of radiation to shrink it. Because my colon ruptured I developed a very large abscess, the bacterial abscess that took three months to resolve. That had to be drained. I had to wear drain 24 hours a day for three months which is pretty unpleasant, had to be emptied every night. And so once that was resolved then there was talk of perhaps putting me on chemotherapy pills. But because the abscess is an ongoing concern, putting me on chemo pills will suppress my immune system and therefore I could develop a serious infection, a life threatening infection. So at this stage I'm being monitored. So there's no active treatment. I'm essentially a palliative care patient.

AMT: And you also live with spinal muscular atrophy. First of all what is that?

ING WONG WARD: So spinal muscular atrophy is a congenital disability. The easiest way to explain is that I have pings in my cells that don't connect, that don't talk to my spine. So in other words there's signals missing and I don't walk. I've never walked. I have other people help me babe, get me dressed. All the activities of daily living, I need assistance with and my muscles are very weak. So I'm dealing with muscle weakness, lower respiratory system. So when it comes to cancer, anybody who has cancer takes a huge hit physically. So I took a very big hit last year when I ended up in hospital. I ended up in hospital multiple times because of the infection, because of various complications and it was a massive pit. At one point I said to my doctors, you know, I'm amazed I'm still alive. You know like there's no reason why I should be here. I think it's kind of a miracle that I'm sitting here looking at you having this conversation. And yes my case is very complex. Oh yes. Not an easy patient, not typical patient.

AMT: And we're sitting here talking about this in your condo as if we're talking about just anything, Ing.

ING WONG WARD: Yes I realize that that's strange but I think this has become part of our lives now. You know it's not easy. It's not what I want from my life. It's not what I expected of my life by any stretch of the imagination but I think I've always been the type of person who is forthright. And so when people ask me about this I've just told them, you know, every person who deals with cancer has a different way of coping of dealing with it. I have friends who have quietly written to me and said 'I know that you have cancer. I have metastatic colon cancer. Can I come over to your house and talk to you?' And I say sure. You know, I've had people write to me and say 'I'm getting breast cancer treatment I don't want anybody to know. Are you in radiation right now? Will I see the radiation waiting room at Princess Margaret?' And I've said well maybe [Laughs]. So it's amazing to me how many people cope with cancer and people have different ways of dealing with that. Mine has been to talk about it.

AMT: And how do you talk about your future?

ING WONG WARD: The future has definitely changed because I used to think in terms of 20 years, 25 years. My husband I talk about 'now' a lot, very much in the moment. I don't plan anything more than I say a week in advance. So I have appointments scheduled. I see a psychiatrist. I have scheduled appointments with her for the next several months. But you know in terms of five years, ten years, no. Not anymore. I think it's a real day by day thing. But it's also a week by week thing. But it's you know I'm not even thinking about what I'll be doing in September, October, you know Christmas. So I you know I vaguely think that yes I'll be around for that. I don't see why it wouldn't be. It's so uncertain. And I think one thing we had to learn to live with as a family is a certain amount of uncertainty which is difficult. So a lot of this has been about rethinking and reshaping and reframing how we live.

AMT: And how have you done that? What have you told your daughter?

ING WONG WARD: That's been the hardest part. So our daughter is turning 10. And you know when I went off to the hospital for the first time, I honestly didn't think I had anything major and I ended up in hospital for 11 days. It was very difficult for her. And then I was in and out of hospital over the course of the summer and she refers to it as the hard times. And so we told her very honestly every step of the way what's happening. When I was diagnosed with cancer you know we told her that mommy has cancer. When I went through radiation we told him mommy is going through radiation that would make me very tired and I'd be sleeping a lot, because I did sleep a lot. I was barely awake most days serves, awake enough to getting on with her and do bedtime stories. But that was pretty much it. You know I told her that we wouldn't be going on vacation and we wouldn't be doing the normal things we do his family; going to the gallery and the weekend or going shopping, that kind of thing. And then when we knew that the cancer was coming out what I basically said was the cancer is not coming out and the cancer will make mommy sticker. Based on the advice of my palliative care doctor and my psychiatrist. We have not told her what the longer term prognosis is because at her age this could be very traumatizing. So there will be a point when we have to have that conversation and we absolutely will. But at this stage you know it's.. It's not the kind of thing we want to go down that road as of yet simply because it could be deeply upsetting for her.

AMT: I want to back up for a moment in. You are not a woman who is stopped by seeming barriers. At one point I think on one of your feeds you've called yourself wheelchair unbound. Talk to me a little bit about the choices you've made in pursuing your life and in not stopping against seeming barriers.

ING WONG WARD: I think I am an incredibly stubborn person to the point of utter obnoxiousness. I really do. I mean I don't and when I think back upon my life I think yeah I don't look at myself and think wow, I'm so cool. I'm so great and look at everything I've done I just want to jump into doing everything full hog. And so I think over the years I've looked at it as Yeah I have a disability. There are real barriers but how dare society impose those barriers, not just upon me but so many other people disabilities. And I've taken a great deal of solace in the community of people disability that it's not just about me and not just about what I say or do, but I belong to a much broader movement of people who have an incredible incredible things. Like I look south of the border to protests at Capitol Hill amongst Americans with disabilities who are getting arrested to protect Medicare Medicaid and the Affordable Care Act. And I sit here and think the way I have it easy, I just you know trot down to the hospital with my Ontario Health Insurance Card and I get treatment. I don't have to worry about these things. So for me I do think that what I've done in my life comes down to stubbornness and a will.

AMT: So where does that stubbornness come from? What was life like when you were a kid?

ING WONG WARD: My parents were immigrants. My father's from China. They have the classic story. My mother is from Singapore. They met in Vancouver at the University of British Columbia as foreign students. They looked across a crowded room and say 'Hey, I like the looks of you' and so began their relationship. And I know both of my parents. Now they're old and they're quite sweet but they were very stubborn people. My father was a very stubborn man. He you know came to this country on a Ph.D. scholarship because he wanted to make something of himself and my mother, as a Singaporean girl, a member of eight children, eight children and very very poor. This was before Singapore was the glittering metropolis it is now. She would look into the world and say 'I can't stay here. I need to I need to go on. I need to do something'. She chose to come to Vancouver because she had relatives there. So I think a lot of my stubbornness comes from them. My mother definitely fought for me. She pushed me hard to be independent. I was like 11 years old and had to make my own orthodontist appointments. So when I look back on my childhood and my youth there was this expectation that I had to fend for myself because no one would bend for me.

AMT: What would they say to you?

ING WONG WARD: Well for my mother in particular. She was very clear that with my disability that I could not be sale labour. That was her terminology. That if I was going to look after myself - and she fully expected that I would look after myself - I would have to do in school. I'd have to get a degree. I'd have to find a job that would enable me some level of self-sufficiency. And she didn't know fully what that looks like. There was no expectation that I would fall through the cracks. I think I knew very early on that that was simply not acceptable. That was not going to be my life.

AMT: Why did you pick journalism?

ING WONG WARD: When I was 11 I was I went to a mainstream junior high, so mainstream being a school with non-disabled children and I, up until that point, been at a school for disabled children. And I had to make friends, back then there were no attendants to help me with my coat and my locker and my books and whatnot. And so I made friends with this girl and we were typical friends. We fought. We'd giggle about boy. We'd do things at school and then she moved away. And a year later she got in contact with me. Her mother had entered her into a contest because she'd been my friend because I was somehow very special and she won the award. She won three thousand dollars and a trip to summer camp. And I remembered that ,the local media was all over this and there was a profile of my friend who was no longer really my friend at this point, and the way I was described was so forth me even as a young girl it was you know how sad and pathetic I was, and how she picked me up out of the dirt. And it was not our friendship at all. I remember at that age in my head and I still remember it at the age of 44 now, I can do better than this. And so that's why I decided to become a journalist to change that point of view.

AMT: And I listen to you now and I wonder, journalistically, we still live a long way to go.

ING WONG WARD: Thank you for acknowledging that.

AMT: You have been talking about how we in the media look at disability and changes in people's ability when it comes to chronic or terminal or severe illness. And we talk about dying with dignity and all of this kind of dovetails well.

ING WONG WARD: .You know this is what I'm thinking about now. This is where I'm at. When I decided to become a palliative care patient, because it was something I had to actively decide, a lot if it came down to self advocacy for me. I have been a lifelong self advocate and actively encouraged other people to be self advocates. And for me the question has always been about living with dignity. And how do you as a person with a disability live with dignity, which means having a range of choices in community sports. But also when it came to palliative care, it was about me having control over the stage of my life which was end of life care. And not knowing what the prognosis is ,how long you know a year, two years, three years, five years. So it just made sense to from a very pragmatic point of view to meet with the palliative care doctor. And as I spoke to her I realized I've always had this discomfort with the term dying with dignity as it relates to medical assistance and dying. Because in my view it's slowly become the implication that there is only one way to die with dignity, that when your body starts to fall apart, when you start to lose function, when you need incontinence care, when you can't eat anymore, even though you're still alive somehow that's not dignifying. And yet I know so many people with disabilities and so many people in a variety of circumstances who are not defined by how they go to the bathroom, or how they eat, or how they communicate. So what is this whole notion that these are things that should make us think that dying is the only way to deal with this. It's very subtle but it's something that's been discussed amongst disability rights advocates around the world. You will find anywhere in the world where there is this discussion about dying with dignity that there are disabled people who are deeply deeply concerned that this speaks to our existence. And so for me it was never on the table to look at medical assistance in dying. It's frightening to me. I believe that people should have the choice in this country. There's a law in place. I think we need to have a greater understanding of who's choosing medical assistance and dying and why. And the 'why' piece is extremely critical to me because I also know now that across the country people are not able to access public palliative care and hospice care in a timely fashion. People with disabilities are not able to access the supports they need in various parts of the country and that makes sure will live much closer in my view. So we have no national standard on palliative care. Palliative care as a concept is relatively new. So why is it that we only talk about medical assistance in dying? For me I don't want my end to come at the end of a point he poisoned syringe. That to me was very blunt. It's a blunt statement. And I recognize it's a blunt statement that make people uncomfortable. But let's be honest about medical assistance in dying. Whatever your situation is, somebody is coming to your bedside to enjoy your life. You know we can talk about the need for that. We can certainly discuss why some people feel that that is the best way for them to end their lives. I have to say for me that is terrifying. I can't do that. For me the end should be a mystery. I don't want to pick a date and say this is the end of my life simply because when I think about what's transpired in the past year, when I could have died at many different points what I would have missed and I would have missed out a lot.

AMT: When we talk about dying we never talk about living and nobody's dead yet.

ING WONG WARD: I'm sure as heck not dead yet. I know I think about that every day. There was a period when I was very very very like I'd wake up and I'd say oh I'm still alive today. So you know my life is definitely smaller right now. You know my apartment is you know my main base of operations. And you know it's not what at all we would have expected even a few years ago but it still has meaning. Tim and I are together. We're very fortunate that he's with me. We still bicker like we used to, sometimes but different things than we did but we still bicker. I think we're still who we were when we first got together. It's our 20th anniversary in August. We've had a lifetime together. And you know we know that it's not going to be a marriage as long as we both would have wanted but it still has meaning. It's still... We still want to be together. It's drawing us closer together. Even on the days when it's very mundane we're still together in this. And I think that has really pulled me through.

AMT: Is that another reason you're not interested in picking a date for a needle?

ING WONG WARD: Yes that's a big part of it. I think about my daughter all the time. I think how- you know she's 10 almost and I think how would my husband explain that to him when she is older. You know a lot of this comes down to me being around for her. And there will be a time when he will have to say to her that I want you to know that your mother tried. She wanted to be here for you. The only time I cry when I talk about her [cries].

AMT: I remember when you were pregnant because your pregnancy was so complicated. You fought for that daughter.

ING WONG WARD: I did. You know I had a good pregnancy and then I went to respiratory failure, ten hours after she is born. And I remember at the time I can't die of this baby. This baby needs a mom. And that still halts. This kid needs a mom you know and I think about that all the time.

AMT: In a note to friends and family on Facebook you said 'a compromised life is still worth living'. What do you want us to confront about the way we think about living and dying?

ING WONG WARD: I want us to really consider what dignity means and to not focus on purely the physical losses that we're all going to face whether it be through old age or illness. I also wanted to think about as a society what are we willing to pay for. You know it's harsh to say this but I think about this particularly when I look at what's happening to disabled people in America and the United Kingdom. I feel very lucky to be Canadian, but I also worry in the back of my mind that you know as we perceive that resources are shrinking, how much willingness will there be to fund communities of self support services. And so I want us to think about what dignified living means to the most vulnerable in our society particularly when it comes to disability because I think people with disabilities can have the most amazing life if they given the support that they need. And too often I read stories even in this country where people aren't getting the support they need and there's always that level of despair. And I feel that despair in a way nondisabled people don't, that's ultimately about the quality and making sure that everyone has a shot to achieve what they're going to achieve whether it's in my case having had an incredible career and family or for someone else it might be something that's very different, but it's no less dignified and it's no less meaningful.

AMT: You know, I know you don't want to be called inspirational, but you're inspiring us to think, so thank you.

ING WONG WARD: I'm okay with that, inspiring people to think

MW: That was Anna Maria Tremonti speaking with Ing Wong Ward. Ing is a disability rights advocate and former CBC Radio producer. Since that interview in May, Ing was hospitalized again because of an infection. She's now back home and shares this update.

SOUNDCLIP

ING WONG WARD: The CT scan showed that my cancer has progressed slightly. The tumor which has been sitting on my pelvic bone has started to erode the bone and it's causing a bit more pain. So I'm very glad that I chose to go into palliative care early because my palliative care doctor has been able to help me manage this increased pain through medications and other therapies. The good news is, this hasn't changed my longer term life prognosis. I still have years as far as the doctors could tell, as opposed to months weeks or days. But obviously the risk of infection is still a serious consideration. I've also told my daughter, because she asked what the long term prognosis is, so she now knows that I will die from cancer. That was obviously a very difficult conversation to have. However I'm glad that we had it because she's now actually more comfortable in some ways with knowing what the future looks like. She was hiding a lot and internalizing a lot. And I don't think my husband and I realized that she was filling in the gaps with worst case scenarios, and so now she at least knows that things are going to be difficult but we have some time to be together and to create memories.

MW: I'm Megan Williams. Thanks for listening to the summer edition of The Current.

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Thursday July 26, 2018 Full Episode Transcript

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