The LowDOWN: A Down Syndrome Podcast
The LowDOWN: A Down Syndrome Podcast
Down Syndrome in the Era of Climate Change
On Season 10, Episode 2 of The LowDOWN: A Down Syndrome Podcast, Glen Hoos gives us the lowdown on how climate change impacts people with Down syndrome.
The LowDOWN: A Down Syndrome Podcast is produced by the Down Syndrome Resource Foundation. Learn more and support the podcast at DSRF.org.
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Today on the Lowdown It Downs is in Podcast Glen , whos gives us a lowdown on how climate change impacts people with Down Syndrome. Over to you, Hannah and Marla .
Speaker 2:Thanks, Danielle. This episode is brought to you by our Season 10 sponsor, the Ames Family Foundation. Hello everyone and welcome to the Lowdown Podcast. My name is Hena , and joining me is my wonderful co-host, Marla. Hello, Marla. I am excited because Me too , we're doing something that we haven't done. Yeah. It's been 10 whole seasons for the most part, where we've had our wonderful editor marketing guru, Glen Huss , beyond the other side. I mean, he's been a guest here and there. Mm-Hmm . <affirmative> . But today it's, he's gonna be our sole guest talking about a topic that he's very passionate about. Um, so yeah. So today's episode focuses on a topic that often does not get much attention, and many people may not link it to the world of disability, and especially the world of Down Syndrome. We are so happy to welcome our wonderful producer, turn to guest Glenn Hust , to the lowdown to talk about the effects of climate change for individuals with Down Syndrome. Glen has worked at the Down Syndrome Resource Foundation in a variety of roles since 2012. Earlier in 2024, he added sustainability to his portfolio of responsibilities becoming Dsfs first Director of Communications and Sustainability. Glen has a very personal connection , uh, to the work of DSRF as one of his four children is A-D-S-R-F student, Rebecca, who we all know and love , um, who has Down Syndrome and autism, while another child has multiple developmental disabilities, including autism, also who we know and love. Glen is also an active member of the BC Climate Emergency Campaign, and is dedicated to ensuring that the voices of people with Down Syndrome and other disabilities are centered amidst the climate crisis. So, very important topic. Welcome to the Low Down , Glen .
Speaker 3:Thank you, Hannah .
Speaker 2:Very happy to have you. Are you excited to talk to us instead of just listening?
Speaker 3:I'm always excited to talk to you, but I usually prefer to do it without a microphone. Yes.
Speaker 2:I mean, fair enough. Yes. Fair enough. Usually like , but this is important. We're gonna, we're gonna go for it. Exactly. So Glen knows that we have a tradition of asking secret questions. And the fun part about this is that these questions were even a secret to Glen . So I get us started and then I'll hand it over to Marla to finish off. Um, Glen , if you could choose one superpower, what would it be?
Speaker 3:Oh , one superpower. Um, maybe I'll just go basic with flying. Okay . Sometimes I have dreams where I have the ability to fly, and it seemed kind of fun. <laugh> .
Speaker 2:Yeah , it does . Yeah . And very like, environmentally friendly and a sustainable layer . True . Around True . I
Speaker 3:Solve my guilt
Speaker 2:Getting airplane . Exactly . Perfect. <laugh> , excellent. Multiple on multiple fronts. It works. Um, okay, second question. If you could rewrite the ending to any movie, what movie would it be? And like a brief synopsis of like, what would that, where what movie would you like to rewrite the ending for? You don't have to give me the ending, but just
Speaker 3:My word. These are difficult questions. <laugh>
Speaker 2:<laugh> .
Speaker 3:Um, what movie would I rewrite the ending for? Can I go TV show instead? Sure.
Speaker 2:Yeah. Okay. Yeah, yeah, yeah. That's fine.
Speaker 3:Uh, I'll go with The Sopranos. Oh , it's well known to have a very controversial ending. Mm-Hmm. <affirmative> . Don't know exactly how it ended. Mm-Hmm . <affirmative> . And I'm a very kind of black and white person I like to come out of Yeah . These and TV shows and knowing definitively what happens .
Speaker 2:Yes . Yes . You need a conclusion of some kind. Yeah , exactly. Yeah . Yeah . I
Speaker 3:I don't even particularly care what the ending is.
Speaker 2:Yeah . Just need to know, need to happen . Answers. Answers, yes. Yes, exactly. Okay. Marla, over to you. Alright . Question for you, which song would be the anthem of your life if you could choose?
Speaker 3:So, I'm well known as a fan of the band, the Airborne Toxic Event. You sure are. Most people have never heard of. Mm-Hmm.
Speaker 2:<affirmative> . That's also true. Yep .
Speaker 3:Mm-Hmm . If I was to pick one of their songs , uh, it would be one called All At Once, which is how Your Life Can Change in the Blink of An Eye, which I feel like has happened to me multiple times in my life. Mm-Hmm. <affirmative>. Um, but also, I kind of want to just say Bruce Springsteen Born to Run because <laugh> , that's my favorite album of all time. And it came out the same month I was born. So both , yeah .
Speaker 2:Oh's true thematic
Speaker 3:50 next year, so Wow. Yeah. It's not really lyrically, but spiritually. Okay .
Speaker 2:I'll go with that. Great. I love how much thought you had into this. Yeah . That's awesome. I think you're allowed to have two. It's not, it's not a real category, so you can have as many as you want, really . Yes , exactly . Perfect . So I think that's completely fine. Um, let's talk about climate change. So we'll start with some context. How did you first become aware of the problem of climate change? And basically why do you care? Why are you personally concerned about it?
Speaker 3:So, strangely enough, I can almost pinpoint it to the month a hit . Um , in the summer of 2017, there was an article , uh, published that got an extreme amount of attention. Mm-Hmm . <affirmative> basically outlining where the climate's at, where it's going, how quickly things are going south. Mm-Hmm . <affirmative> . And , um, in climate circles, I know a lot of people who that is sort of their personal wake up call, and it certainly was for me. Um, and , um, I'm very much , uh, an all or nothing person. Once I get interested in something <laugh> , I go like all the way and learn like everything there is to learn about it. Yeah. Literally reading that one article just made me want to learn more. And since then I've probably read in the neighborhood of like 50 books and 5,000 articles. I'm gonna guess. Wow . Mm-Hmm. <affirmative> Yeah . About climate change and sort of doing a , a self , uh, education about it. Mm-Hmm. <affirmative> . Mm-Hmm. <affirmative> . Um, then it got , uh, it got more personal in 2021 when we had the BC heat dome , um, where we had temperatures approaching 50 degrees in , in bc. And , uh, experiencing that with my two kids with disabilities, particularly my daughter Becca, who you mentioned, has down Derman autism. Um, Becca is extremely particular to put it lightly about , um, how things in her environment need to be Mm-Hmm . <affirmative> and what she's willing to do and what she's not willing to do. And among the things she's not willing to do is she doesn't like fans. She won't let you open her window at night. She won't drink water. Mm-Hmm. <affirmative> . So basically all of the basic things that we do when we're too hot Right? Yeah. Are things that she just literally refuses to do. Yeah. No matter how uncomfortable she may be feeling from the heat. Yeah.
Speaker 2:Mm-Hmm. <affirmative> . So , and we know that people with Down syndrome are very poor heat regulators. So I can imagine that that must have been a, not like a stressful time for you guys too , because she was like, you need to cool off some way, but Yeah. Those major ways you're not Yeah.
Speaker 3:So fortunately being the avid wedger weather watcher that I am, I knew this was coming. Mm-Hmm. <affirmative> . And , uh, several days before it came, I booked us a hotel room. Mm-Hmm . <affirmative> . 'cause I figured that was the only way we were gonna stay cool. Was to get somewhere that had air conditioning. Mm-Hmm. <affirmative> . So we literally just hunkered down for , uh, 72 hours Mm-Hmm . <laugh> and air conditioned dark hotel room. Mm-Hmm . <affirmative> . Um, so we didn't even actually experience that much of the heat do ourselves, but that's when I really started to , um, think particularly about how climate impacts people with disabilities Mm-Hmm. <affirmative> and, and started to feel a need to , uh, to, to learn more and work in that area. Mm-Hmm. <affirmative>.
Speaker 2:And for reference for people who are listening to this from further away and are surprised by the fact that we don't have air conditioners here by and large , um, that's because we're used to a Pacific Northwest sort of climate and microclimates being rainforest or temperate rainforest. So we don't, we didn't need them , um, before, in the before times that it was never actually that hot or that cold. Um, and all the windows for a very long time until recently were single pane glass. So not built for this kind of energy efficiency that would be assumed to be standard or basic in a more extreme Mm-Hmm . <affirmative> , um, climate. Mm-Hmm. <affirmative> . Yeah. Um, so for people who are not following climate news very closely, maybe you can give us a little bit of summary so that people feel up to speed of where the planet is at at this time.
Speaker 3:Sure. So, I don't wanna be alarmist or scary
Speaker 2:That's hard in this topic. The
Speaker 3:Unfortunate reality is, is things are not particularly good. Um, I'm gonna refer later to , uh, Georgetown University has , um, a public archive project on climate and disability, and they've put out a , a helpful plain language guide to climate change. So I thought I would read their definition of climate change. Mm-Hmm . <affirmative> in plain language, climate is the measure of things like the weather and temperature over time in an area of the world, climate change is when the weather and temperature all over the world changes. This makes the environment harder for everyone to live in. Um, I don't want to turn this into a science lecture <laugh> , but I thought , uh, since we probably have people with differing levels of understanding Mm-Hmm . <affirmative> of climate change, I should maybe quickly cover the basics of what it is, what causes it. Um, the first thing I would say is that climate change is real <laugh> . Mm-Hmm. <affirmative> , and I hate to have to say that, but , um, like other issues, it's, it's become politicized and Yeah . And now there's , uh, a segment of the population that doesn't believe what the scientists have to say. And , um, I think it's an underplayed , uh, fact. Um, how much of a scientific consensus there is about it when it , when it comes to the basics about climate change, there's about a 99.7% scientific consensus that this is real. It's caused by ha humans, and it's getting worse very quickly. Mm-Hmm. <affirmative> .
Speaker 2:And for outside reference, that is an extremely high number. You don't see that kind of consensus in areas of medicine, in areas of therapy, and even in areas of education and how to teach math, for example. There's nowhere near that level Yeah. Of consensus. Yeah. So this is very, very high. Yeah.
Speaker 3:Yeah. That's right. So what is causing climate change? It's, it's primarily driven by the burning of fossil fuels like oil, gas, and coal. Uh, those fossil fuels cause pollution that stays in the atmosphere and prevents heat from escaping the earth, which causes the temperature on earth to go up. Um, this overheating causes dangerous extreme weather as we're seeing more and more, and that leads to many negative , um, social economic and physical impacts. So, in terms of where we're at , um, personally, the first time I ever heard about climate change was as a primary school student in the 1980s Mm-Hmm . <affirmative> . And , um, unfortunately, we've reached a stage now where everything they were starting to warn about in the 1980s is starting to come true. Um, at the time I kind of filed it away as something I might have to worry about.
Speaker 2:Yeah. Down the line , very
Speaker 3:End of my life. Yeah. But , uh, it's, it's really recognized now that the, the 2020s in particular has been , um, a turning point , uh, into , into a whole new , um, environment worldwide. Um, in the last two, well, we're not quite through 2024 yet, but , uh, right now, 2024 is on track to be the hottest year on record in the history of humans, which would only beat the record that was set last year. So these have been the two hottest years on record. We've broken the record for hottest day on Earth four times in the last two years, and we're seeing the predicted impacts everywhere around the world. But just speaking in our own neck of the woods in the last few years, we've had the 2021 heat dome, which was followed a couple months later by floods, which caused by trenchill downpours that were supercharged by climate change. We've had wildfires all over the place. Uh, last year. 2023 was by far the biggest wildfire year in Canadian history. We've had entire towns and parts of towns , uh, destroyed by fire, like Litton West Kelowna , and this summer Jasper. And , um, basically we're, we're now right at the ceiling of what scientists have defined as a safe level of temperature increase, and we're crossing into the threshold , um, into a climate state that humans have never experienced before. Yeah . So that's my very , that's concerning <laugh> , very cheerful update of where things are at and why one might be concerning. Yeah.
Speaker 2:Mm-Hmm . <affirmative> . Mm-Hmm . <affirmative> , let's intersect that now with the Down Syndrome community and why you think it's important for the Down Syndrome community to be aware and involved.
Speaker 3:Right. So, I mean, the most obvious answer is that this is a problem that impacts everybody, right? Yeah . No matter what community you're part of. Mm-Hmm. <affirmative> , uh, it's sort of an all hands on deck problem that's going to take everyone Mm-Hmm . <affirmative> and to solve it. Mm-Hmm . <affirmative> . Um, I have a quote that I like from Rupert Reed. Uh , he says, if you care about anything at all, then whether you know it or not, you care about the climate crisis for we are on track to have it sweep away all that we hold dear. If you care about the arts or about disability rights, or about your own children, then you care about climate. But I think for me, it really goes beyond that. Um, because as my experience with Becca shows , um, people with Down Syndrome and other disabilities have higher vulnerability to Mm-Hmm . <affirmative> the impacts of climate change. And that gives those of us in the disability sector, or with disabled people in our lives, even more reason to be concerned Mm-Hmm . <affirmative> than a typical person might have. Um, I think those of us who are parents of kids with disabilities spend an extraordinary amount of time, energy, and resources to create the best possible future for our kids. And when you come to realize that climate change is something that could potentially put all that in jeopardy, it quickly rises to the top of things Mm-Hmm . <affirmative> that we need to be thinking about.
Speaker 2:Mm-Hmm. <affirmative>. Um, yeah. I think I'm really struck by the, I think I wanna say multiple levels of vulnerability. So there's health, vulnerability and exposure to things in the air. Things like smoke that would be riskier for somebody who's prone to infections and things of that nature. And then there's the routine oriented vulnerability of how difficult it is to do fast pivots for safety purposes, such as evacuation. Yeah. Needing to temporarily go somewhere else. Needing to change a routine. Today, we can't go outside because it's X, y , Z. Um, and having to make all of these shifts , um, can be very, very, very challenging. Mm-Hmm. <affirmative> . And I think our, our group of people that we strive to support here tends to be marginalized anyway. Um, and so, like all of the other marginalized groups are going to receive fewer protections , um, with regards to , and won't be pushed on the list. Yes. Mm-Hmm . <affirmative> things. Maybe wanna speak to some of those things. Some of that , um, intersection between maybe disability justice and climate justice, and how the concerns maybe relate and overlap.
Speaker 3:Yeah. That's really good. Um, so I think what we've come to understand is that all social justice is intersectional. Mm-Hmm. <affirmative> , you can't put everything in its own neat little box. Um, in the social sciences, disability is sometimes referred to as a threat multiplier. And it's far from the o only one, basically any factor that causes people to be marginalized. Mm-Hmm . <affirmative> , race, income , uh, gender, gender orientation. Mm-Hmm . <affirmative> , um, all those things are, are threat multipliers. And what that basically means is that for virtually any social problem you can think of, disability exacerbates the impact. Mm-Hmm. <affirmative> , people who have disabilities will tend to experience the consequences of social problems earlier and to a more severe degree than people without disabilities. And I think this was really evident during covid Hmm . Um, where people with disabilities not only had worse outcomes with respect to severe illness and mortality, but they felt the strain on the healthcare system more than most. Mm-Hmm . Because they rely on that system more than most. Mm-Hmm. <affirmative> , um, when we quote unquote return to normal, a lot of people with disabilities were left behind with our society dropping protections that were still necessary for people who are more vulnerable. Um, I think we all know families who stayed in lockdown for far longer than the general public Oh , yeah . Because of , of risks to their loved one. Mm-Hmm . <affirmative> . And even when it came to the government's economic response, it disproportionately benefited people without disabilities. Um, they instituted a $2,000 a month benefit for people who lost employment due to COVID . And that's significantly more than people with disabilities receive. Yeah .
Speaker 2:Ever , every month ever gonna say Yeah .
Speaker 3:To live on. Mm-Hmm . <affirmative> . So that's kind of typical of , of how these, these issues work. Mm-Hmm. <affirmative> , um, you know , when we talk about climate change , um, scientists warn that we're headed for a situation that's gonna be far more disruptive than covid for a much longer time. And unfortunately, people with disabilities are again, on the front lines in terms of experiencing the impacts of that. Mm-Hmm. <affirmative>. So an intersectional approach to the climate issue recognizes that there can be no solutions without centering the needs of those who are most deeply impacted. And that includes for sure, people with disabilities. Mm-Hmm. <affirmative>.
Speaker 2:And one of the things that I think is interesting here is while we have certainly seen the impacts of climate change, we haven't experienced that much, to be honest. Mm-Hmm. <affirmative> . Um, and I think there now there are communities, whole communities who have been wiped out. The whole town is gone, it's been burned. And those would probably be the people to talk to. Mm-Hmm . <affirmative> and the disabled individuals in those communities. Mm-Hmm . <affirmative> , their voices should really be amplified and future policy development , um, because they're the ones who have seen the sort of the full truth of the situation that we're now living, whereas many people haven't. Mm-Hmm . <affirmative> , I don't think, or we can kind of just read on a headline , have some denial about what's , what's actually happening. Yeah . Um, I do think it's important to make this discussion concrete as much as we can. So I'm hoping you can give us some examples of how the climate crisis is impacting people with Down syndrome and other disabilities as well. Um, and what you'd like to say around some, some of that.
Speaker 3:Sure. Uh, so I, I tend to think of it in three categories, which, which I'll go through. Sure. Uh, health and safety impacts, social impacts and transition impacts, which I'll explain, but health and safety, that's kind of like the most obvious level. Mm-Hmm. <affirmative> , um, people with disabilities , um, are at greater risk during extreme weather events. Heat, floods, fire, drought, storms, all of it impacts people with disabilities more. Um, the research has shown that people with disabilities are two to four times more likely to die or be injured in these situations. Mm-Hmm. <affirmative> , um, Hina , you and I actually co-wrote an article on , uh, how people with Down syndrome Mm-Hmm . <affirmative> are at much higher risk of heat illness Mm-Hmm. <affirmative> , uh, due to multiple factors pertaining to how their bodies regulate temperature. Yeah. Um , and interestingly, in the last three months since the beginning of June, that article is far and away the most viewed page on our PSRF website. Mm-Hmm . <affirmative> . Yeah . It's like three times higher than the second highest page
Speaker 2:<laugh> . Oh . I suspect that has everything to do with the extreme heat. Yeah. Yeah . That's been, yeah . Widespread this summer. Yeah. And I think a lot of people didn't even think about that. I mean, you know, that this population is certainly more fragile and more vulnerable to heat. I mean, we all, everyone has a hard time during extreme heat, but these guys have a , for multiple reasons, physically communication purposes for various reasons, it's so difficult for them to, to manage in those extreme temperatures. Mm-Hmm. <affirmative> . Yeah . And I think there's, there's extreme temperatures and then there's prolonged temperatures Yeah . Where it doesn't, it doesn't cool off. Yeah . Right . So there's no relief for heat just goes on for a very, very long time. And there's, that's kind of a compounding issue and issue . And we see the effects of it in our sessions as well. We see kids that have had rough sleeves because it's been too hot, or they are not eating or drinking the way they normally do because the , the temperatures are, you know, just too much for them to handle. So it definitely makes an impact for us. Yeah .
Speaker 3:Um, apart from that , uh, Marla you mentioned as well that , um, emergency planning does often does not adequately account for needs of people . Mm-Hmm . <affirmative> . Mm-Hmm . <affirmative> with disabilities, you know, they may need more time, time ,
Speaker 2:A big factor. They
Speaker 3:May , might not have access to a personal vehicle. Uh, they might not be able to evacuate without access to medicine, medical devices, and health services. Mm-Hmm. <affirmative> , um, I was actually reading just last night , uh, an article about it was called BC's Climate Adaptation DIS Disability Crisis. And , uh, this isn't down syndrome specific, but , uh, across disabilities. But it said , uh, when the heat dome came, there was no plan to distribute air conditioning to people whose medical conditions make them heat sensitive. There was no plan to, to transport those with mobility limitations to cooling centers, nor any teams deployed to bring batteries to the homes of those whose power was cut later in the year. There was no plan to fly in life sustaining medical care when the floods caused a month long interruption to transportation networks. Highways in the province were in shambles, rendering rural dialysis patients unable to make it to their appointments. People who need specialized diets to keep medical symptoms at bay came nightmarishly close to running out of ingredients when their grocery store , uh, store shelves were left empty for weeks. One mom couldn't order her daughter's specialty food products for more than two months. So those are just a sample of, of mm-Hmm . <affirmative> , sort of the health and safety impacts that can impact people with disabilities. Mm-Hmm . <affirmative> . Um, beyond that , uh, the , the , the next category is social impacts. And to be honest, this is probably the one that keeps me up <laugh> at night the most. Mm-Hmm . <affirmative> . Um, we think about climate change, and we think, okay, yeah. It's, it's gonna be hotter, there's gonna be more extreme weather, but we tend not to think , uh, as much about how that's gonna affect the world economically and socially. Mm-Hmm. <affirmative> , um, the scientists are telling us that this is going to lead to a wide range of social problems, including economic upheaval, food and water supply problems, the spread of disease, and , uh, fraying social nets and strain on healthcare . And again, all of these problems are things that have a disproportionately large impact on people with disability. Um, I think especially about like social safety nets, I know how, how much my own family relies on Mm-Hmm . <affirmative> social systems that are around to support us. Um, and, and it's not easy even today to get the supports that we need, whether it's therapy for our children or income support for adults. Um, and then I read about what the economic impact of climate change is likely to be. Um, there , there's a , a study that came out recently that , uh, talks about 2050, which sounds like a long way off, but, you know, my daughter Becca's gonna be 45 years old in 2050. That's Mm-Hmm . <affirmative> , that's not that old <laugh> . Mm-Hmm. <affirmative> . Mm-Hmm . <affirmative> . And the study says that the impacts of climate change are likely to reduce global GDP by 20 to 25% by that time when she is 45. So I'm thinking, well, if it's hard to get adequate government support now Yeah. How much harder is it gonna be if global income is slashed by a quarter? Mm-Hmm . <affirmative> , and I think of the healthcare system as well. Um, last month , um, hurricane Barrel came through , uh, and hit , uh, Houston in particular. And , um, they had the , um, the hurricane , uh, which caused major flooding and damage, and then that was followed right away by an extreme heat wave. And then the power demands of everyone trying to cool themselves caused power to large parts of the city to go down for, like, for some people for weeks. And , um, the doctors there actually said that that period of time their, their healthcare system was stretched beyond even the worst days of covid . And we all remember what that was like. Yeah . And home . And with people with disabilities and down syndrome, having a , a higher reliance on, on healthcare system, that's, that's a major concern as , as we look ahead. Um, and then the other category I wanted to touch on is what I call transition impacts, which deals , um, basically with the effects of the changes society is making to cope with climate change. Mm-Hmm . <affirmative> , which are good and necessary changes, but they also bring impacts on people with disabilities. Um, the changes can be made in , in such a way that they either benefit people with disabilities or in , in a way that they don't. And , um, uh, I've got a quote here from Valerie Novak and Daphne Frys . They, they write that ableism is built into our systems and practices without building together with people with disabilities. Many solutions will uphold exclusion and ableism. Um, and I, I now know a lot of people in, in the , uh, the, the climate space. Mm-Hmm. <affirmative> . And they're very compassionate, supportive, progressive people. Mm-Hmm. <affirmative> , they all have the very best of intentions to include marginalized people and make sure that no one's left behind. But the reality is that if you don't have the lived experience, you don't even know what the problems are. Yeah, exactly. Yeah. Like, I've been reading about things like , um, bike lanes, which I've always thought of as a , a positive solution, but how they can decrease access. Mm-Hmm . <affirmative> to transit services. Mm-Hmm . <affirmative> for people with disabilities. I've read about , um, the plastic straw ban. Mm-Hmm. <affirmative> and all of the impacts that can , um, have on people who really depend on straws for being able to take in Yeah . The nutrients that they need . Mm-Hmm . <affirmative> . Mm-Hmm. <affirmative> . And I'm someone who's coming from a disability perspective, trying to think of things like that. And still those things never occurred to me. 'cause those are outside of my specific disability. Yeah .
Speaker 2:Mm-Hmm . <affirmative> experience. Right. Right. Yeah .
Speaker 3:So that just kind of shows how we need the people with disabilities to have their, their
Speaker 2:Voice . Yeah . They need to be at the table for sure. Yeah. Mm-Hmm. <affirmative> what are, so kind of, now that we kind of have a, a good overview of the problem, what are some examples of solutions that are beneficial to both the disability community and the climate?
Speaker 3:Yeah. Um, and that's, that's really where I'm , um, focusing my efforts. Mm-Hmm. <affirmative> , we're gonna talk a a little bit about my position at DS R and , and how it plays into it. But for a long time, I was just trying to, I , I felt a strong need to do something <laugh> , but I had no idea what to do. Mm-Hmm . <affirmative> , uh, until I realized that , um, I , I already have vulnerable people in my family. I have vulnerable people at work. And so probably the best use of my efforts is to focus on solutions that specifically benefits the people that are already in my life. Mm-Hmm. <affirmative>. Um, and so I , I talked about the health and safety, social and transition impacts. Uh , but each of those areas , um, are not just challenges. They also present opportunities. Mm-Hmm . <affirmative> .
Speaker 2:Mm-Hmm . <affirmative> for people . I think there's a , with disabilities, I think there's a , there's a going wisdom that says the problem outlines the solution. Mm-Hmm . Right. And that if you can really clearly define what the problem is, you're, you're very close to solutions. Yeah . Defining and understanding it. Yeah. Mm-Hmm. <affirmative> ,
Speaker 3:It's really good. Mm-Hmm . <affirmative> . Yeah. So I'm very focused on, on trying to find intersectional solutions, actions that we can take that are a win-win for both the climate and specifically for people with down syndrome. Mm-Hmm. <affirmative> . So , uh, some of the things that I'm looking at in that are inclusive emergency planning. Mm-Hmm. <affirmative> trying to make sure that people with disabilities are not afterthoughts. Mm-Hmm . <affirmative> . Mm-Hmm . <affirmative> when , uh, the powers that beer are planning for Yeah .
Speaker 2:Making those
Speaker 3:Decisions. Yeah . Events that Mm-Hmm . That we know are coming. Um, there's a lot of talk , uh, today about the right to cooling. Right . Uh , there's, even, there's stuff going on in terms of like, should landlords be required to, you know, have air condition , have
Speaker 2:An allow Yep . Tenant
Speaker 3:And stuff like that. Mm-Hmm . <affirmative> . Mm-Hmm. <affirmative> . Um, and to me, people with disabilities are an obvious place to start with that, because we already know they're at higher. Mm-Hmm . <affirmative> risk for , um, um, overheating. Mm-Hmm. <affirmative>.
Speaker 2:And they're very likely to be renting. Yeah . Right. Exactly . There's many pieces. Yeah . There. Yeah.
Speaker 3:Mm-Hmm. <affirmative> . And so there's, there's a piece of technology called a heat pump. Mm-Hmm. <affirmative> , which is kind of a bit of a miracle technology. Mm-Hmm . <affirmative> . Um, despite the name heat pump, it actually , uh, it works , um, for both heating and cooling Mm-Hmm . And it's all electric and much friendlier for the environment than either gas heating or air conditioning. So , um, there's, there's various movements around , um, improving access to heat pumps for everyone. Mm-Hmm . <affirmative> . But to me, an easy , a great place to start would be to provide heat pumps for people with disabilities. Mm-Hmm. <affirmative> . Um, another big one is transit. Mm-Hmm . <affirmative> , um, transit is definitely going to play a key role in, in the transition , um, to , uh, decrease the number of polluting vehicles on the road. Mm-Hmm. <affirmative>. Um, and of course, we know , um, transit plays a big role in the lives of many of our people, of down . Oh , absolutely. Many of our students take transit to get here to DSRF and in their daily life . So anything that can be done in terms of expanding, improving and , and greening transit is something that benefits both the climate and the Down syndrome community. And then , um, economically, there's, there's a lot of talk about transitioning to a green economy and what does that mean, and sort of the job opportunities that it's gonna create. And , um, I think it's important that , uh, people with Down syndrome and disabilities be included in that as well. Um, there's, there's a movement , um, for what's called the Youth Climate Core , um, which has actually already been established in the US . And , um, now there's efforts to have, have something similar started in, actually, there's a BC movement and a Canadian movement. Um, but the basic idea of the Youth Climate Corps is , um, a huge government investment that would , um, allow any , uh, young person under the age of 35 to be employed for up to two years , um, in the area of climate adaptation and medication projects. Nice . And , um, I was actually on a call with , um, mps , um, that are leading the charge on this in the House of Commons, and I had the chance to ask them a question. Mm-Hmm . <affirmative> . And I asked, will the Youth Climate Core include jobs that are appropriate for people with Down syndrome? And they said, yes. The intention is that every Canadian person under the age of 35, who wants to, to use their skills and spend a couple of years of their life contributing to this effort , uh, should be able to be a part of it. So, Mm-Hmm. <affirmative> , um, just trying to , uh, keep the heat on in that regards and Yeah. And make sure that it actually happens. 'cause it would be incredible if it would, some of our high school graduates with Down Syndrome could, you know, get paid a proper wage for two years to, whether it's, you know, cleaning up places that need to be cleaned up or, Mm-Hmm . <affirmative> , I mean, there's just so many ways they contribute to Mm-Hmm . <affirmative> raising awareness of the problem even Mm-Hmm . <affirmative> . Um, and that would give them, you know, skills and experience that could then lead to, to other employment and experiences in the future. So, Mm-Hmm . Yeah. Those are a few of the sort of solutions that I've sort of identified as being particularly relevant to Mm-Hmm . <affirmative> , the Down Syndrome community. Mm-Hmm.
Speaker 2:<affirmative>. And it seems like there is a need, which I think is, it's a universal need, but it's even more evident for this group , um, for things like better prediction of weather events, because one of the biggest factors that I see always is time. Mm-Hmm. <affirmative> . And people with Down syndrome, any family will tell you that person needs more time to get through their routines. It can sometimes be aggravating for family members, but time is, is needed. And so there's, there is need for more , uh, lag time or more preparation time. Yeah . Problem warning of systems , early warning systems, things like that. Um, yeah. I , there's, there's so much to do.
Speaker 3:Yeah. We've, we've often joked in the past that like, if her house burned down and not even in a climate context, we started a fire somehow, like Becca, there is no way to put urgency into her.
Speaker 2:Yeah. Yeah.
Speaker 3:The house could be burning down around her. Mm-Hmm. <affirmative> . And if she's not ready to move, she's not moving. Mm-Hmm. <affirmative> . Yeah . So anything we can do to sort of , yeah. Give families more time and Mm-Hmm. <affirmative> , and they also need, need to put more thought into the preparation Mm-Hmm. <affirmative> . Like , they can't just grab their keys and wallet and run.
Speaker 2:And , and a lot of the current way that things are uses that they're like, be ready to go within 10 minutes of us telling you. Well, that is not practical. Yeah. For many people. Yeah. Yeah. And I think this is a great opportunity for those OTs and SLPs and therapists and teachers also listening out there of incorporating some of this kind of education for our, for our population as well. Because a lot of the times, you know, these are some of the things that they may not have even thought about. Right. They might have opinions on it. And you alluded to earlier about, you know , um, considering their lived experiences and what they are concerned about. So I would kind of like to just pivot a little bit to that. Like, can you talk a little bit about the importance of disabled wisdom in addressing the climate crisis? And maybe even just a little bit about , um, advocacy opportunities similar to kind of what we've done at DSRF with some of our adults about climate change and
Speaker 3:Yeah. Yeah. This is one of my favorite things to talk about. Um, 'cause we don't often think about the unique wisdom of people with disabilities. And I mean, people with disabilities have, have wisdom to bring to every aspect of life. Mm-Hmm. <affirmative> . But I think the climate change issue is one where they have a particular role to play. Um, Greta Thunberg, who of course is one of the most famous climate activists , um, has autism Mm-Hmm. <affirmative> . And she's referred to her autism as a superpower that has enabled her to grasp the seriousness of the situation and the level of change that needs to happen to address it. Uh , and I think there's, there's absolutely something to that. Um, I'm gonna hit you with a long quote, because I , I , I can't say it better than this. Um, I mentioned Georgetown University. They ha they have a public archive project on disability and climate change. It's basically a place where they collect , um, stories of, of how climate is impacting people with disabilities. And then as part of that, they have this plain language guide to , uh, climate change. And I wanted to read an excerpt from that about , um, the , the talks about , um, the, the wisdom that people with , uh, disabilities have Mm-Hmm . <affirmative> with respect to this issue. So it says , uh, disabled people live in a world that wasn't built for us. We face discrimination every day in lots of different ways. We deal with buildings that are not accessible or that hurt our bodies to use. We deal with not getting the services and support we need to live our daily lives. We deal with people who won't help us communicate in the ways that work for us. We deal with public tra transportation that is not accessible or that doesn't get to us, or doesn't get us where we need to go. But these problems get even worse during natural disasters. That's why disabled people understand better than anyone how dangerous climate change can be. We have to think about and prepare for an emergency in ways that non-disabled people don't. Non-disabled people think the world will always be accessible for them. They take access for granted, but climate change makes things less accessible for everyone. Mm-Hmm . Disabled people know how to make the world more accessible. We already know how to live in a world that wasn't built for us. That's why people should take our advice when they think about climate change. As disabled people. We take care of each other. We show each other that our lives have value, even when others hurt us or discriminate. We are finding new ways to live together that can work for all of us. We know we need to make choices to protect and care for the earth. We know we can work together to help each other in the world. We believe we can make a world where we were all meant to survive. So, yeah. I just, I've read that quote so many times. Yeah. Um, because I, I think it speaks to why I decided to sort of take on this work. I'm mm-Hmm . <affirmative> . And , uh, yeah.
Speaker 2:Yeah. That's, that's good. It's good to sit with that quote for a bit and really reflect on, on that and how I, I , the , the part that I especially kind of connected to was that during climate emergencies , like everything is going , it's going to affect everybody. It's everything is going to be inaccessible for everyone, not just for one particular group. So we , there's this like, this like community feeling that we are, I mean, it sounds cliche, but we are all in it together. But I think we think of it in , in such like, isolated silo situations, or we're just like, well, we're gonna make sure that we're taken care of, and then everyone else could , like , we can't think , think of everybody. We can't take care of everybody. And I think in this situation, our, our , um, our reflections have to think about that really and look inwardly and be like, it is going to affect everybody. So , Mm-Hmm. <affirmative>. Yeah. Um, you and , uh, at , at the DSF recently, you took a , the step of actually adding sustainability to your job title. Um, I suspect this is a quite unique position amongst disability organizations. Um, why did you feel this was necessary and what do you hope to accomplish with the role?
Speaker 3:Yeah. So, well, in the wider corporate world , uh, organizations of all kinds are starting to recognize the importance of this issue and, and the role they have to play in it. Mm-Hmm. <affirmative> and sustainability or sustainability officer is kind of becoming a more common job title in sort of the for-profit world. Mm-Hmm. <affirmative> . Uh , but like you said, I , it's, it's pretty unique in the non-profit world. And , uh, pretty unique, I would think in the disability sector specifically. Kind of seems like a luxury that we can't, can't really afford to Yeah. To have someone in that position. Um, but I think it's just as important in our sector as it is in any other, especially considering the extra vulnerability of our people. Um, so as I began to, to think about these issues, and really, I would say I had at least like three years of thinking about how disability affects people with down, or sorry, how climate change affects people with down syndrome disability, and like, what could I do about it? Mm-Hmm. <affirmative> . Um, and I , I spent , um, much of that time trying to locate others in the disability community that were working on this issue. And I really couldn't find much. Um , but the more I thought about it, the , the more I realized that I really was perfectly positioned to make a difference where I was , um, working with the people that I work with. Um, and fortunately for me , uh, DSRF leadership was , um, very supportive of me sort of bringing this element into my work. Um, and, you know, it, it really hasn't cost the organization anything. I sort of fit it into the , uh, the margins of my job and even in my spare time . So , um, yeah. So it was , um, once I kind of figured out what needed to be done , uh, the transition was pretty easy. Um,
Speaker 2:Can you give some examples of Yeah. What has, what has, I mean, we know, but people listening don't know. So what has happened since you've had this role here? Like Sure . For people in other organizations who are like, maybe we should do that, they would love to know probably what small intention it has looked like here . Yeah , sure. And how easy it is to , to get going. 'cause we've implemented small things here that are starting us on that journey. But yeah. We should say it appears to be easy because you just tell us and we do things <laugh>, but it might have been very hard. We'll have to hear about it easy. Also easy in the sense that it's not really making a radical shift being like, oh, man, my job is harder now. It's like, oh, I should have been doing this all along. I just never thought about it. Right. So, yeah .
Speaker 3:So when, when they agreed to, to let me sort of add this to my position , um, we sat down and sort of came up with the mandate of Mm-Hmm . <affirmative> , what that would entail. Mm-Hmm . <affirmative> . And , uh, I have a basically a three part mandate. So the first is sort of what you've been talking about in terms of leading and developing dsfs , uh, sustainability strategy. Mm-Hmm. <affirmative>, including identifying opportunities , um, to improve the sustainability of dsfs operations. And I mean, to be honest, like we're a service organization. We're not like manufacturing products and creating waste. And
Speaker 2:That's what you think. I'm making visuals up here. Like, no , nobody so much . We use so much laminating pouches . You I'm kidding .
Speaker 3:It's true. I
Speaker 2:Mean , and one of the things you implemented has actually helped that out a lot too, though . Yeah . I'll let you answer that,
Speaker 3:But yeah . Yeah . So , um, so that to say like, we don't have to make, like radical changes. Mm-Hmm. <affirmative> , uh, but so far we've done things like instituting soft plastic recycling, which plays in tear lamination. Mm-Hmm .
Speaker 2:<affirmative> .
Speaker 3:Um, I'm working through , uh, an office checklist that's , um, provided by Green bc Mm-Hmm . <affirmative> , you can actually get like certified as like a green business and stuff if you hit a certain number of things on their list. So I'm, I'm sort of working our way through that and , and checking off things and they're little things. Mm-Hmm . <affirmative> . Yeah . Like each one just seems so little, but they do add up. Um, probably in Ds F's case , um, the biggest impact we could make would be to eliminate gas from our heating system. Mm-Hmm. <affirmative> . And fortunately <laugh> , maybe our , um, our HVAC system is actually due for a massive overhaul. Mm-Hmm . <affirmative> . Um, so I don't wanna put the part before the horse, but , um, the government has major, major rebates, like to the tune of a hundred thousand dollars for getting your building off gas. So , Mm-Hmm . Uh , since we were already gonna be redoing the HVAC system, we're , we're looking into whether that would be a possibility for us. Mm-Hmm . <affirmative> . Mm-Hmm . <affirmative> . Um, and even things like, we have our annual runup for Down syndrome, and up until now we've always , um, every participant gets a T-shirt. And so glad we don't do that anymore . Yeah . And every year it's like a different color . And now they have 15 Yeah . Different runup down T-shirts. Mm-Hmm . <affirmative> . So this year we decided to , uh, encourage people to reuse their shirt from last year. Mm-Hmm . <affirmative> if they want a new shirt or they haven't been before, they can get a shirt. But , um, this year we cut down our shirt order by 500 shirts, so Wow . That, that was another nice little win. Um, so that's the first part is looking at DSRF sustainability. Uh, secondly, and , um, I guess why I'm doing this podcast is , uh, to educate , um, our staff, our clients, and our families, and the broader down syndrome community about the risks , uh, of climate change , uh, that are specific to people with intellectual and developmental disabilities. Mm-Hmm . <affirmative> . Um, so this podcast is part of that. And I am , um, in the midst of writing a webinar that I want to present next year on Earth Day, and also the Canadian Down Syndrome Society emailed me this morning and asked if I would speak on this issue to the Canadian Down Syndrome Collaborative, which is , um, people , uh, representatives of , uh, down syndrome organizations from across Canada. So , mm-Hmm. <affirmative> quite excited about that. Mm-Hmm. <affirmative> . Um, and then the third element is to lead and develop dsfs advocacy efforts to ensure those with Down syndrome are represented in climate planning and policy development. Mm-Hmm. <affirmative> <affirmative> . So that's where the , the work I'm doing in terms of working on heat pumps for people with disabilities and , um, the Youth Climate Core jobs for people with Down Syndrome. So everything I'm doing is very specifically targeted to people with Down syndrome. Mm-Hmm . <affirmative> , the SRF isn't just paying me to do general climate activism, it's specifically to ensure that Down Syndrome voices are heard. Yeah. I , I'm starting, I , I've only been doing this for six months, so <laugh> lots of ideas that haven't happened yet, but Yeah .
Speaker 2:But you've gotten a lot of accomplished already in six months.
Speaker 3:Pretty good . But I , I'm starting to think of how to pull actual people with Down syndrome. Mm-Hmm . <affirmative> into it. Mm-Hmm. <affirmative> . So it's not just me doing things on their behalf Mm-Hmm . <affirmative> what I think they need. Even though, you know, as a parent, I, I have pretty good understanding. Yeah. Mm-Hmm . <affirmative> , but it's still not the same as someone speaking for themselves, so.
Speaker 2:Right. And we have had some, we've had, like the DSF does have a , uh, a group program, advocacy program called Speaking Out, and you've done like a video on the Impacts of Heat . And we do have quite a few students that are interested in this topic. So, you know, it , it's not that it's something that we're like, you know, forcing them to do or trying to get them to come in and try it, but there are quite a few that have shown interest in this area. So it's just like, how do we use that and help them be a part of the, of the solution? Yeah.
Speaker 3:Um, because we have, we have DSRF ambassadors. Mm-Hmm . <affirmative> that I work with , uh, in my communications role. Mm-Hmm. <affirmative> , which is the lion's share of what I do. Um, and I work with them to sort of represent DSRF. But for this issue, I feel like it needs to be people that are passionate about this issue. Mm-Hmm . Not just 'cause I'm saying, oh, can you say this for us? Mm-Hmm . Or whatever. Exactly. Yeah . I was actually introduced the other day to a young lady named Nika . Mm-Hmm . <affirmative> . Mm-Hmm . Assuming you both know Nika , we do Mm-Hmm. <affirmative> . And she actually did some environmental studies , um, yeah ,
Speaker 2:She did ,
Speaker 3:Um , after high school, I think. Mm-Hmm . <affirmative> and , um, <laugh> . She even , uh, um, after the pandemic when all our students were on , uh, zoom therapy , um, most of them came back when, when they could, but , uh, she told her therapist, no, I wanna stay on virtual because it's more environmentally friendly
Speaker 2:<laugh> for me to not have to drive to do , drive up to my , yeah . Mm-Hmm.
Speaker 3:<affirmative> . Yeah . So I was introduced to her , uh, last week and she's very interested in Mm-Hmm . <affirmative> getting involved in some of this stuff. So that's what's exciting me right now, is just , uh, the opportunity to, if, if I can create a way for people like Nika to have her voice heard. Yeah . That's what I want to do. Yeah.
Speaker 2:And as people are listening to this episode, what's the one thing you most want people in the Down syndrome community to understand about the climate crisis?
Speaker 3:Um, I guess the one thing to understand would just be that this is actually happening. <laugh> . Mm-Hmm . <affirmative> ,
Speaker 2:It's real.
Speaker 3:It's going to significantly impact the daily life of our loved ones with Down Syndrome. Um, by the time today's children are adults and not even old adults, early adulthood, mid adulthood. Mm-Hmm. <affirmative> , this is gonna be impacting their lives to a very significant degree. And I feel kind of bad <laugh> putting another issue in people's laps. In fact, my own wife Mm-Hmm . <affirmative> often says, don't we have enough problems already? Yeah. But the fact is that this is coming and if we don't make our voices heard, they're not gonna be heard. And in 20 years we're gonna be wishing we had Mm-Hmm . <affirmative> . Mm-Hmm . <affirmative> . And I know parents of of kids with Down syndrome are stretched to the max mm-Hmm . <affirmative> , they're already advocating for services. They're advocating even just for respect and dignity. Mm-Hmm. <affirmative> . Um, and they don't have time to Yeah . Add more
Speaker 2:To it the bandwidth.
Speaker 3:Yeah. I think it's more important just to be even just thinking of it Mm-Hmm. <affirmative> and realizing when we're planning for our children's future, that it's probably not gonna look the same as things look right now. Mm-Hmm. <affirmative> and thinking through the consequences of that and Yeah . Mm-Hmm.
Speaker 2:<affirmative> . And if we think of all of the things that are going to be happening and need to happen as a sort of terrain, we want to be on that train before it's moving so fast we can't catch it. Yeah. Right. We wanna make sure that people with disabilities are on from the beginning Yeah . And considered in every aspect moving forward before the urgency is so high that Yeah . Nobody's stopping for them. Right. Yeah. And I think listening to this episode is a good first step, right? Oh, absolutely. Like when ing jump in with two feet , get all go all the way in. I mean, if you want to, that's great. <laugh> Glen will be very happy about that, as we would all, but you know, it, it always , it is , it sounds, you know, hokey, but it always starts off with a small step. There are little things that you can already do after listening to this episode and be like, okay, let me see, you know, what, what is my contribution? Because I know anytime any massive change needs to happen in any sector of our lives, we're always like, you have to start off small. So as overwhelming as the idea and as as anxiety provoking as it may sound, because it is a very scary situation that we're in , um, there are things that we can do. So my question to you, Glenn , is what gives you hope in, in a situation like this?
Speaker 3:Hmm . Um, I mean, it probably comes back to the disabled wisdom that we talked about. Mm-Hmm . <affirmative> , uh, because the disability community really does have a lot of very harder knowledge about how to be adaptable. Mm-Hmm . <affirmative> . Um, and that's gonna be increasingly needed, I think, by all of us. Mm-Hmm. <affirmative> . Um, I mentioned when I first started exploring the connections between climate and disability, there was hardly any information. Like I found a handful of articles, didn't really find any groups that were doing anything, didn't find any individuals who are sort of devoted to this. I was looking everywhere and kind of coming up empty. But now even just, I would say in the past year , uh, I'm starting to see a lot more , um, there's websites and there's entire podcasts devoted to disability and climate change. Mm-Hmm . Stability and climate change . There's books, there's videos of people sharing their stories and sort of claiming their seat at the table. And so I would say my hope is that more people in the Down syndrome community will add their voices to this because we're more than just of vulnerable community. Mm-Hmm . <affirmative> . We actually have a lot to offer. Mm-Hmm . <affirmative> when it comes to solutions. Yeah .
Speaker 2:Mm-Hmm . Yeah . Absolutely. Um, and for our listeners out there, you mentioned quite a few grit resources already, and we will have them linked in our show notes. Um, but anything else you'd like to add? If somebody's thinking like, you know what, I'm gonna look into this a little bit more, but in small chunks Sure . What would you suggest? Where do you suggest they would go for that?
Speaker 3:Yeah, so , um, the DSRF website , um, I'm starting to develop a little corner of the website <laugh> that , um, has , um, resources , uh, several of them produced by us, but also links to external resources. Mm-Hmm . <affirmative> . Uh , but like you said, we'll also put these on the, on the show notes page. Mm-Hmm . <affirmative> , um, I'm just finishing a really good book right now called Disabled Ecologies by Sonara Taylor. Mm-Hmm. <affirmative> . It's very academic. It's not an easy read, but it's basically , um, it's about , uh, how the root causes of , um, in many cases of actual disability, but especially , um, the way our, our system has failed. People with disabilities are the same root causes as the climate crisis and draws parallels between people with disabilities and what she calls our disabled ecology, the, the harms that are being done to the earth. So if you're in the mood for sort of a more philosophical academic take on it. Mm-Hmm. <affirmative> , that's a great book. Mm-Hmm. <affirmative> . Um, yeah, I would definitely check out the, the Public Archive project that I mentioned from Georgetown University. Uh, there's a podcast called the Enabling PO Commons podcast, which is all about climate change from a disabled perspective. And also , um, just last month, the BC Disability Alliance put out the latest issue of their magazine and , uh, magazine is called Transition. And they devoted their entire last issue to , um, disability in climate change. Climate change. Okay , great. So we'll have links for all those. Amazing.
Speaker 2:Mm-Hmm, <affirmative> . Awesome. Well thank you so much Clin for having this discussion with us. I think it's a very important topic and like I said at the top of the episode, it's not something that we often equate to like, you know, our jobs and to the down center population. 'cause like you said, there's so many other things in the DS community and for families that have loved ones with Down syndrome that they have to contend with. But this is an equally important issue that that should be, that should be considered. So we really appreciate you coming in and giving us a good education on the topic. I know I've learned quite a lot , um, but also helping our listeners understand a little bit more. So thank you. Appreciate
Speaker 4:It.
Speaker 2:Thank you both. Thanks for doing .