Encouraging Abilities Podcast

Ableism Prompts a New Awareness Campaign

Ableism is an issue. From inadequate designs to being left out or looked down upon, ableism prevents many from being included in everyday life. The Office of the BC Human Rights Commissioner and Disability Alliance BC have joined forces to address the issue and created a new awareness campaign called Rewrite the Rules.

A Chat with Dr. Jaimie Borisoff: On the Forefront of Wheelchair Design

Accessibility affects many people, and even one day, perhaps yourself. In this Encouraging Abilities Podcast, we connected with Dr. Jaimie Borisoff who runs a development program at BCIT with an eye on designing better wheelchairs and other adaptive equipment that helps people stay included.

Transforming the World One Building at a Time With Karin Pasqua

Accessibility should not be an afterthought. Buildings and spaces should not be designed for people with no disabilities only. Because, as Karin Pasqua of Meaningful Access Consultants says, we are all going to be affected at some point in our lives by accessibility issues. With that in mind, we need to look at design as universal before shovels hit the dirt.

70 Years of Doing the Impossible

The Developmental Disabilities Association's Executive Director Alanna Hendren talks about the association's 70th anniversary, where the organization has been, and where it's headed in the 21st century. A staunch advocate for people with developmental disabilities, Alanna Hendren has been involved in this sector for over 40 years.

A Chat with Dr. Laverne Jacobs - Canada’s First Member of the UN’s Committee on the Rights of Persons With Disabilities

Dr. Laverne Jacobs is making Canada proud. Not only has she published one of the first books on disability law in Canada, but has recently been elected to the United Nations Committee on the Rights of Persons With Disabilities. And...she has another book in the works!
 
TRANSCRIPT:
Evan Kelly  0:05  Thank you again for joining us on the Developmental Disabilities Association's encouraging abilities podcast. I am your host DDA communications manager Evan Kelly. Joining me today is Dr. Laverne Jacobs. Dr. Jacobs is a full professor at the University of Windsor Faculty of Law and a former assistant Associate Dean rather, she teaches researches rights all in the areas of disability rights law, administrative law, human rights laws She has published and presented both here in Canada and around the world. And now Dr. Jacobs has been in the news fairly recently, she was elected to the United Nations Committee on the Rights of Persons with Disabilities. The committee monitors the implementation of the Convention on the Rights of Persons with Disabilities by countries that have ratified it. No UN CRPD committee members are independent experts like Dr. Jacobs selected from countries around the world. The special thing about this as Dr. Jacobs is the first ever Canadian elected to serve on this committee. And if that's not enough, Dr. Jacobs founded and directs the Law, Disability and social change project. It's a research and public advocacy center at the Windsor law that looks that works to foster and develop inclusive communities. So it's, so thank you very much for joining me today. Dr. J. Jacobs, it's really quite an honor to have you here.
Dr. Laverne Jacobs  1:27  Thank you. Thank you for having me on the show. And it's a pleasure to be here.
Evan Kelly  1:31  Now those accomplishments go on and on. When you hear that, you know, someone talked about that. How does that make you feel?
Dr. Laverne Jacobs  1:41  Well, I think that as with most people, it can be a bit awkward to be placed in the spotlight. But I primarily feel very grateful to have had the opportunity and the experiences that I've had. I'm grateful and excited to be able to use those experiences to contribute to the the task of furthering the rights of persons with disabilities. And overall, ultimately, I think that it's not the number of experiences that you have, but the ways in which you use them to contribute to the community. That's important.
Evan Kelly  2:12  Yes, absolutely. No. So what right straight to that to the UN committee? What does it mean to you to be not just elected to it, obviously, there's a very select handful of people, but to be the first Canadian on on this committee, how does that, what does that mean to you?
Dr. Laverne Jacobs  2:29  Yeah, well, thank you for the question, placing everything just in a bit of context, I'd say, to start that my concern for disability rights is prompted by my academic and professional experience, as well as by my lived experience as a person with physical disabilities, I use a wheelchair. And I've seen significant and very positive turns in legal academia. One in particular, is that I've seen, people have begun to realize in a much more holistic way, the challenges faced by others. But I think it's not only in academia, but I've also seen this in the practice of law and in society more generally. And so the more that we accept the intersecting identities and growing knowledge, that the growing knowledge about individuals and their experiences, the more that we see that equality rights may look different for different people, because of their different lived experiences. So tying that back to what it means to be the first Canadian elected to the CRPD, I can say that it's a great honour to be part of a committee that works to define equality rights. And set international norm, but also to do that, at this very point in time when there's such a growing recognition of intersectionality. You know, as you've mentioned, we're independent experts. And so I don't represent views of Canada. But I think that coming from Canada and having been an academic here, where I've had the chance to reflect and analyze on various experiences of disability rights law, really gives me a backdrop that I can draw from, I mean, of course, as with any country, there's, you know, positive elements and negative elements. But we certainly have a unique tapestry that I can draw from. So yeah, so it's a, it's a great honor, I think to be the first Canadian elected.
Evan Kelly  4:28  So how many how many countries have ratified this? How many involved?
Dr. Laverne Jacobs  4:35  183 countries.
Evan Kelly  4:37  And growing I hope.
Dr. Laverne Jacobs  4:39  Yeah. Yeah. And growing. A very large number. Yeah.
Evan Kelly  4:45  So can you tell me a little bit about your role within the committee?
Dr. Laverne Jacobs  4:50  Yes, absolutely. So the committee does four main things, I've mentioned a couple of them already. Under the optional protocol is received complaints from individuals and groups, and it also receives inquiries. So requests to conduct inquiries into states, when there are allegations of serious and systemic violations of the convention, the CRPD also conducts regular reviews of countries. So countries file reports, first two years after the convention has come into force for that. And then every four years after that, so the CRPD committee conducts these constructive dialogue with the states parties about their report. And the reports really are kind of an overview of how the country is doing in terms of putting in place mechanisms, etc, to further the Rights of Persons with Disabilities. Another major function of the CRPD committee is to provide general comments. And so these general comments serve as interpretive guidance for, for how to interpret the various articles of the convention. So there are eight general comments, you know, the most recent one actually just came out last week dealing with the rights to work and employment. But there are eight general comments in total right now. And they deal with topics such as inclusive education, women and girls with disabilities and other topics. And they really are important in terms of serving as, you know, guidance for states parties, when they are trying to determine, you know, the best way to understand what the convention actually is trying to get across. And I think the final thing is that the CRPD fulfills various other functions. So their statements and guidelines that are sometimes issues, just recently, again, this month, there was a set of guidelines issued relating to the institutionalization of persons with disabilities. And you know, I'm sure that DDA is aware of this. So these guidelines are created after several months of consultation. And the institutionalization, you know, is of huge importance to many. So yeah. So, sitting on the committee would mean, being involved in some way with these additional, these additional functions, such as the creation of guidelines, etc. So, as a member of the committee, I'd be involved in these broad areas, these four broad areas. And, yeah, I think I think that's about it. If I can just say, I think it's wonderful that you're asking this question, because I think that was such a new role. It's sometimes somewhat unclear as to what committee members do. You know, people sometimes think, people sometimes think that the role is one of advocacy before the CRPD Committee, which it's not so I've had people for example, reach out to me to, to see if I can, you know, represent them, which I can't. But yeah, these are some of the primary things that members of the committee do.
Evan Kelly  8:31  Right, just just a great big overarching look at things. Law and disability your book law on disability in Canada was published in 2021. So when did you begin working on it?
Dr. Laverne Jacobs  8:43  Thanks so much for the question. So yes, law and disability in Canada. It's the first Canadian textbook on disability in Canada, and it was published last year. And I think that in some ways, I started writing it when I first created my seminar in law and disability, which I teach at Windsor law, possibly even a bit before that, is I prepared for that, that first seminar. But I brought together five colleagues from across the country to put together this book. And we started writing in 2017. So it took four years to create the book. And this was primarily due to the original research that we collectively put into the book. There wasn't much written on some of the topics, not much written at all and some of the topic areas that we wanted to cover in terms of the interaction between people with disabilities and the law. Some of the topics that we cover include community living, social benefits, mental health and specialized courts, and the criminal law and justice system and persons with disabilities. We really wanted to create a book that would fill gaps in the law school curriculum, because not much is taught in law schools about persons with disabilities and their every day, you know engagements with the law. So we also wanted to, we wanted to fill these gaps. But we also wanted to foster respect for persons with disabilities in the law in the legal context, regardless of the area of the law. So those were some of our goals. And yeah, it took us four years to put together this first edition. 
Evan Kelly  10:21  Now, is this now a book part of the law curriculum in many schools, or is this sort of with just with Windsor? Or is it a book that anybody can just pick up and read?
Dr. Laverne Jacobs  10:34  Well, it's actually a book that anyone can pick up and read. But it's designed to be a textbook within the law school curriculum, we have had a considerable amount of take up already. So we're quite excited about that. And we also had invitations to speak about the book, you know, etc. So, the book, one final thing I can say is that the book is not only designed for the law school curriculum, it's also designed for people who teach in areas that are kind of adjacent to law. So people in human resources, people in areas like social work, Disability Studies, of course. And so there, there's quite a wide potential audience for the book.
Evan Kelly  11:23  Now, you mentioned you working with five other authors, all legal experts in the field. So how do you define who gets to write about what and how do you, how do you sort of put that all together in a cohesive fashion?
Dr. Laverne Jacobs  11:34  Yeah, it's a great question. We wrote primarily in our fields of interest. So this helped, helped us because these were areas in which we already had expertise. But it also helps the book to cut across the law school curriculum. So for example, I'm very interested in equality rights law and the interactions of individuals with government. And so this is an area of law that's known as administrative law. But what's unique about what I do, the work that I do is that I examine how questions of disability equality or disability inequality exists, and how they can be dealt with, in government itself. So it's really at the points where people with disabilities interact with the government, such as through security, securing disability benefit, workers, compensations, etc, that I focus on. So I focused on a chapter relating to equality and persons with disabilities, generally. So there's a chapter that, that looks at equality law, human rights, law, etc. and international law. But I also have a chapter that looks at Community Living, which was a particular interest of mine. So it traces the history of community living, examines key cases in Canada and internationally, and consider some topics related to living in the community and acquiring appropriate support, including during emergencies, such as COVID, which went on for, you know, quite a bit of time covered quite a bit of the period of time when we were writing. My colleagues similarly wrote on areas of expertise, because their areas of expertise, so that included criminal law, employment law, mental health and illness, women and girls with disabilities, etc.
Evan Kelly  13:37  I really liked that community living is a bit of a focus for yourself, from a legal point of view, obviously, that's a huge one for us. We're we're all about that community living and you may not be aware, we just launched a documentary called Doing the Impossible. The story of the Developmental Disabilities Association. It's, it's really, really a great piece that, you know, I shouldn't be sitting here plugging our own thing, but here we go. But that's available on our website at develop.bc.ca. And, you know, sort of goes from 1950 to or our founder sort of becomes the spark for community living here in British Columbia and beyond and deinstitutionalization. It's quite a quite a good story.
Dr. Laverne Jacobs  14:23  Yeah, I just see, I just see information about it on the on the website. And I'm looking forward to having a chance to seeing the documentary in full. In the chapter that I wrote, and I was very surprised to find how little had been written about the law relating to community living. But in Canada, in the chapter that I wrote, I do use BC legislation actually as one of my examples.
Evan Kelly  14:51  Fantastic. Moving on a bit now. You've been a lawyer for over 20 years. Since you started are disability rights better, are they are we more inclusive, is there anything that's concerning right now that needs to be addressed in your mind?
Dr. Laverne Jacobs  15:03  Well I think that, yes, I mean, yes to both. I mean, I think that there have been positive advances. But I think that there are also challenges that we need to address. So what Canada, I think has done well, is that it's had legislation in place for quite some time. So historically, we see legislation relating to the equality rights of persons with disabilities being enacted, you know, from the 1960s onward. So, things like the Human Rights Code coming into place in 1962, or the Ontario blind persons Rights Act, coming into place in 1970. The Human Rights Code, sorry, I was referring to was Ontario, but we see kind of an early recognition of disability. At the same time, I think that even if historically, we've had this legislation, a lot of legislation has come through the work of advocates. So lawyers, pushing for lawyers and others, not always lawyers that are members of the community pushing to have disability added, for example, as a prohibited ground under the charter or sometimes in legislation itself, the creation of accessibility legislation, etc. So I think that in terms of what we've seen, go well, you know, I think we kind of have a long history a kind of a long foundation. But I think that in terms of improvement, there are, you know, a myriad of concerns that have been highlighted by COVID-19. And that really needs to be addressed. And I think that we need to not always have to rely on advocates right? So I think it would be good if governments were a bit more proactive. Yeah. And moving these issues forward. So, um, so yeah, I guess in my 20 years as a lawyer, and as a law professor, I would say that there are still issues that need to be addressed, and that perhaps the process could be improved as well.
Evan Kelly  17:23  They make an interesting point about, I'm not sure, people would necessarily understand what you mean, by saying, we don't have to just rely on advocates. It's sort of, do you mean, we sort of you need to get to the issues before they happen, in a sense?
Dr. Laverne Jacobs  17:40  Well, yeah, I mean, that we should be creating pathways. And I'm not saying that they're not there, they just could be stronger. So creating pathways so that it's easier to recognize what these issues are. So if you take accessibility legislation, as an example, the whole idea there is to have kind of a proactive way of knocking down barriers, even before they become barriers, you know. And so I think that that's a start. But that type of approach, which is more proactive, could be implemented in other areas as well. So for example, I think one of the kinds of substantive issues that we're seeing a lot, you know, we're having a lot of challenges within the disability community deal with poverty, right. So, you know, the impact of poverty on people with disabilities, and people from intersectional backgrounds, so women with disabilities, people of color with disabilities, and I can, as an academic, I've seen that it's, you know, quite clear that the impact of poverty has led to, you know, all kinds of negative implications for people with disabilities. So, we need to have avenues where those types of issues are addressed. Before, you know, the worst happens. And instead, we've seen, I think, quite a few instances where people are being forced to choose ways to, you know, support themselves or in their lives, etc. Because there isn't that kind of support or avenue for change readily available.
Evan Kelly  19:24  So we almost need to, you know, I've been using the word universality more than then accessibility or even inclusion or because accessibility in a lot of ways. To me says we've designed something, oh, but now we have to go back and redesign it because now we have to make it accessible. But if we approach laws, if we approach anything in terms of design, or, you know, human rights, what have you from a universal perspective, maybe that's just a better way to go.
Dr. Laverne Jacobs  19:58  Yeah, I agree. I agree with that. Yeah.
Evan Kelly  20:02  So can you tell us about law disability and social change project?
Dr. Laverne Jacobs  20:07  Yeah, absolutely. So the law disability and social change project is a research and public advocacy center at University of Windsor Faculty of Law. We work to foster more inclusive communities. So kind of building on what you've just mentioned, our goal is really to make sure that communities are not just, you know, accessible, they don't have space for people with disabilities, but that they actually are, you know, open and welcoming and understand different ways of being. So that's one of, that's what our primary goal is, we have three main pillars, we conduct research, and I would say that's probably our our major pillar. So we conduct research into various topics relating to law on disability. So disability discrimination, generally, we've looked at transportation and equality. We've looked at other areas as well, communities, marginalized communities and disability benefits. Our second area is public engagement. So mainly education, and I can give you an example. We get into the community we, we have held information seminars in the local rehabilitation hospital, for example, online disability topics. And public advocacy is our third pillar. So you know, that's just kind of sharing that education, kind of knowledge. We can be with other other NGO groups, or it can be on our own. So those are the main things that that we do.
Evan Kelly  21:56  Now, in terms of education, obviously, you're a lot of your audience, are university students in law, do you target any high schools or anything like that, where some of this information?
Dr. Laverne Jacobs  22:09  It's no, actually high school, that is a no but high school. They're not on our list. But I was, what we do is, we reach out to people beyond University as well. So you know, we have been involved and invited to conduct workshops, for example, on some of the topics in the textbook. So the loss ability and social change project, while it incorporates students and students are involved, the students, researchers, they are not necessarily the end users. In fact, you know, some of the work that we've done has been, you know, research commissioned by government, for example, where I'll be the principal researcher, and the students will assist. So, so yes, we do reach out, but we reach out more broadly to community than just university students.
Evan Kelly  23:07  Gotcha. So what are some of the more recent projects from the project?
Dr. Laverne Jacobs  23:14  Well, we contributed to the development of the accessible Canada Act. And so that was done at the time when the statute was being created. A recent study from this year dealt with the Social Security tribunal where we examined the experiences of individuals who were seeking to appeal their denial of CPP benefits. So Canada Pension Plan disability benefits. And we looked more particularly at a navigator system that has been set up by the Tribunal to see you know, whether it was working well and how it could, how it could benefit more effectively people with disabilities and from other marginalized communities. Other things that we've been involved with, we regularly provide summaries of key Human Rights Tribunal decisions dealing with disability. In 2021, last year, we created an annotated accessible Canada Act, which is a free resource available on our website. We've also created, there are a number of things. But one last one I'll mention is we during COVID-19, we created a database of you know, news stories, news articles dealing with COVID, and persons with disabilities, that that was really the principal way to get information at the time, there were no cases etc. And that's also available through our website. So we are involved in a number of different types of projects. 
Evan Kelly  24:48  Now, you mentioned you're an author, of course, that you mentioned to me a little while ago about another book you're writing. Can you tell me about that?
Dr. Laverne Jacobs  24:58  Sure. Absolutely. I'm currently in the process of writing a book called law and the right of access from litigation to citizen participation. And what it is, is a book that looks at accessibility legislation and its growth. So the move away from kind of human rights adjudicative approaches to approaches that are designed to be more proactive in removing barriers for people with disabilities. In this book, I look at this development, both historically and comparatively. So I look at other countries as well. But I also try to look at and focus on the interaction between people with disabilities, and the government. So there's a lot of consultation in these types of these types of processes for developing accessibility standards. And so I focus on on the ways in which people with disabilities are engaged and the challenges that they face.
Evan Kelly  26:14  When do you expect to be finished that one?
Dr. Laverne Jacobs  26:17  Well, that book should be out in late 2023 or early 2024. 
Evan Kelly  26:24  So another solid year work for you then. Are you and any of your cohorts involved in sort of looking at the new proposed disability benefit that the Canadian government is putting together?
Dr. Laverne Jacobs  26:36  Oh, that's a good question. So we have not been asked to do any background research but as an academic, I am involved in, you know, conference an academic conference, we'll be discussing the issue. But in terms of, you know, research for this actual the creation of the legislation, no, we haven't been involved in that.
Evan Kelly  27:05  How can organizations like DDA better serve the needs of our community?
Dr. Laverne Jacobs  27:09  Well, I think the best thing that can be done by any organization is to keep in touch with members of the disability community that you, that you serve, and to ensure that you can support those in the community to share their concerns, you know, through the avenues where they need to go. So I believe that listening and effective and sometimes innovative ways of supporting is, is absolutely key.
Evan Kelly  27:35  Okay, well, thanks for tuning in. Our guest today has been Dr. Laverne Jacobs. Dr. Jacobs is a professor at the University of Windsor, Windsor teaching, disability rights law, administrative law, and of course, the first Canadian in history to join the UN's Committee on the Rights of Persons with Disabilities. Really honored to have you on the show today and thanks for joining us.
Dr. Laverne Jacobs  27:58  Thank you, Evan.
 

DDA Talks to Author and Professor Deborah Stienstra About the Current Disability Rights Landscape in Canada

Rights are usually a foregone conclusion in Canada, however, when it comes to people with disabilities, their rights are sometimes overlooked, or, at best, not really taken into consideration. Accessibility matters, inclusion matters, but making sure these things are enforced and protected takes an entire population to shift its collective outlook. That shift starts with people like Deborah Stienstra, author of About Canada: Disability Rights, Second Edition. Where are we right now, and how far do we have to go?
 
TRANSCRIPT
Evan Kelly  0:04  Welcome to DDA's Encouraging Abilities podcast. I'm your host again DDA communications manager Evan Kelly. Today's podcast we are joined by Deborah Stienstra. Miss Stienstra is a professor at the University of Guelph in Ontario, where she holds the Juris Loski chair in families and work and is the director of live work well Research Center and Professor rather of political science. Now for many years, she has also been working with the Canadian Research Institute for the Advancement of Women, and FEM North net, or the feminist northern network, which includes working with a diverse group of women and women who identify as having a disability. With having said all that, she's also the author of the recently published about Canada disability rights, the second edition, not, of course, to mention the first edition that was published in 2012. So thank you for taking the time today to talk to us about Canada and the current landscape of disability rights. So just, when I read all that, what do you think, that seems like an awfully large impressive body of work?
Deborah Stienstra  1:11  Okay, so thanks for that. But really, my work in disability comes from a very different place than sort of the academic and literature pieces that you're talking about. And it comes because I was married, my first husband, partner was a man named Patrick Kellerman, who lived with multiple sclerosis. And together, we had two children and raised two children. And we, I was somebody who worked in women's organizing and thinking and research. And he worked in the disability community, for Disabled Peoples' International in Winnipeg. And as his MS progressed, there were more and more barriers, challenges, creativities required to live the life we wanted to live together as a family. And I finally got to the point where I thought, How come I'm separating what I think and research about from what I live day to day as a family member with this, you know, of somebody with disabilities. And so we first started working together on some research, and then when he retired as a result of the escalation of his MS. I kept going in disability rights and research. And it's been a passion for me, and as my body has become more... as I've lived with more impairment, and had to adjust myself to living with disabilities. You know, it's, it's very personal. So yes, I do a lot of things. But really, this is deeply personal. As it is for many of us, I know.
Evan Kelly  3:17  Yeah, that's, you know, once I, when I started, you know, working at Developmental Disabilities Association here in Vancouver, about, I think I've been here for about three years now. Is, is just how many people in Canada actually identify with a disability. It's somewhere around 25%, I believe, and it's just, that's, that's a very large piece of our audience, or just a very large piece of the country. And that, and that's where, obviously, rights need to be more clearly defined and understood. Now, about Canada disability rights that was published in 2021. Now, since the first edition you've seen, have you seen substantial changes in government policy supports or even just some some of the prevailing attitudes in the public? I guess, in a nutshell, have the past 10 years accomplished anything.
Deborah Stienstra  4:04  I think in general, the reason I wanted to write a second edition is because some things had changed. And they were, in my view, substantive changes. So I'm not sure that we could see substantive changes in the number of people who live with poverty, or who are unemployed, or you know, who experienced violence in their lives. And we've seen all of that exacerbated through the COVID pandemic. But what we have seen, I think, is an increasing recognition and awareness of experiences, of the importance of including experiences of women, men and gender diverse people with disabilities, as well. I think we're seeing an increasing response by some governments in Canada, through legislation, so obviously, you know, Ontario has had the Ontarians With Disabilities Act for more than a decade and a half, Manitoba and Nova Scotia have come on, the federal government came on, and you folks in British Columbia have your own Accessibility Act. And while they're not perfect, I think they show something really, really important about our level of awareness and structural change happening, and I see it in things like accessible documents, I no longer have to explain to people why we need accessible documents, there is - or how to make them accessible, right? Like there's so many more resources and procurement, like buying goods and services that are are accessible through universal or inclusive design, or arguments that I have a much easier time making now. So those are some of the big changes that I've seen.
Evan Kelly  6:11  And you mentioned COVID, in your mind, did that highlight some more issues that needed to be considered?
Deborah Stienstra  6:19  Absolutely, I don't think there was anything new that came out in COVID, that we hadn't known before about the experiences and exclusion, and barriers to access. But what it illustrated was how those get intensified in situations of emergencies, and how people need to be included in thinking through our plans for responding to emergencies. And I think the other thing that that came up was an understanding of the intersectional discrimination that different groups of people with disabilities experience. So there's increasing awareness of racialized people with disabilities, who may be working, for example, in health care systems, or chill children with disabilities, seniors with disabilities who live in long term care homes, indigenous people with disabilities and the different access to services that they have if they live in First Nations communities or Inuit communities than those who may live in urban settings. So what we saw and we did a major research project about policies related to COVID, and disability inclusion. And what we found was there is a opening right now to respond to some of the systemic inequity. And if we don't take action now it's not, it's going to be a long time before we get another sense of, of this opening of awareness.
Evan Kelly  8:21  Yeah, I mean, COVID is one thing. Obviously, these are sort of, you know, natural disasters, if you will, the one thing we experienced here in BC, and became a very important thing for us to sort of notice was we had that heat dome last year, if you recall. And we had over 600 people die as a result. And one thing that we realized is that there needs to be better communication, better understanding between people and those with developmental disabilities. Because in one case, I did talk to this one woman who lost her sister. And it was just they didn't know, they didn't know that her room got that hot, and her sister didn't really know how to communicate that. So when, when it comes to some of these things in creating new policies, I guess where does it, where does that fall into in terms of helping define human rights and protecting lives from these kinds of things?
Deborah Stienstra  9:19  Absolutely. And I think that's that example of the heat dome is a horrific but really clear example of what happens when you don't imagine people with disabilities in your decision making and planning. Right? So we didn't imagine the sister that you talked about in the discussions of how to ensure that there were were cool spaces or that there was built in air conditioning or things like that, and how would we have known? Well, we needed to have her or somebody who could, who was aware of her situation, be at the table, in order to illustrate, sort of what she lives with. And I know that you've had a commission of inquiry and that there have been, there was initially a person with disabilities on that, and that that voice wasn't listen to, that that perspective wasn't included, necessarily. And that's, I think, a bit of a challenge. When people with disabilities offer their expertise, they also need to be listened to. So the inclusion needs to be at the table and in the decision making, and in the follow up.
Evan Kelly  10:43  Yes. Sorry. Go ahead.
Deborah Stienstra  10:46  No, so I was just gonna say, I think that's it's a model for all policy. It is about having people with disabilities or their representatives at the table, when decisions are being made with the resources, including financial resources, and accessibility supports, to support their full participation, and making sure that it's not pro forma, that it isn't just, you know, something that is nice. And we can point to the one person who sits on there, that it's, it's substantive, and that it's listened to, and taken seriously. And, part of the decision making.
Evan Kelly  11:32  Absolutely. Now, you mentioned something in the sort of financial vein, the federal government's, of course, I'm sure you're aware of tabled the new Canada disability income benefit. I'm not entirely sure where it's at at this stage. I think it's been through a second reading. But that's, that might be about it. What, what sort of impact are you hoping for this new bill, assuming it gets pushed through?
Deborah Stienstra  11:53  Yeah, and I think that's still up for grabs. I think it's really important for a portion of people with disabilities. And it's important to also not to look at it as the be all and end all of disability supports. So it targets people with disabilities who don't have access to employment income, and who are lower than retirement age, but older than youth. And so what it could do is make sure that they have a consistent, reliable income, that means that they don't have to go on social assistance. And as we all know, social assistance is where lots of people with disabilities end up because we don't have inclusive workplaces, we don't have appropriate supports. So, and we don't have good mechanisms to provide income for many people with disabilities. So social assistance ends up being where folks end up and that is below poverty wages and below poverty income. And so this, if and I hope we can say when, it becomes law, we'll be able to address some of those gaps.
Evan Kelly  13:23  And so the way it is right now, I get the sense that you feel that the government's on on any level, aren't quite doing enough to support people with disabilities financially.
Deborah Stienstra  13:35  I think that disability isn't something that anybody... it is a bit of a lottery, my body works a particular way. And I then in a society where we don't provide supports related to disabilities, I end up bearing the costs of my differences because the society was built for people who aren't like me. So an example that I often like to use is infrastructure and lights. As a sighted person, I need lights to work in the dark when the room is too dark. I don't even have to ask for it. I can turn the lights on because somebody imagined me there. They imagined me as a sighted person needing lights to do my work. My blind friends don't need lights to do their work. Yet they're paying for the hydro costs to give me lights. Well, why shouldn't we pay, as sighted people and non disabled people, for the supports that allow all of us to participate in society? And that's where I think governments have over responsibility to take tax dollars to use for the benefit of those who haven't been imagined in our society and who have to pay for the costs, the barriers to access that exist as a result.
Evan Kelly  15:22  So let's sort of backtrack. What sort of projects are you working on right now?
Deborah Stienstra  15:28  I have many projects.
Evan Kelly  15:30  That, I'm not surprised.
Deborah Stienstra  15:34  Let me talk about two, I am leading a partnership, sort of, grant related to disabilities and livelihoods in Canada. And it's trying to take a notion of livelihoods which is different than work or employment. it's broader than both of those. And it includes, livelihoods are the ways in which we make a living and a life. And so livelihoods can be about how we barter, how we provide care, how we have market gardens, how we do arts and use those as sources to support ourselves. And so we're looking at how people with disabilities in Canada, in a couple of different areas, help us understand this notion of livelihoods and how it helps us understand both participation and inclusion in society. So we're looking around the area of volunteering and people with disabilities, we're looking at arts and people with disabilities. And the one that I'm in particular focused on is around pre employment supports, and young women with disabilities, and what does it take to address for example, the childcare needs of young women with disabilities or the educational gaps or appropriate supports to ensure better access to income. So that's a project that I'm pretty excited about, we just got noticed that the disability and work conference in November of this year, we'll be presenting a panel on some of our research related to that, and I'm excited about that.
Evan Kelly  17:29  That sounds really good. I don't know if, you're in Ontario, we're out here. But here at DDA, we've got two social enterprises, one of which is our organization called Jobs West, where we actually, we work with employers and clients so that people with developmental disabilities can find and keep jobs. It's a big part of what we do. So it's, it's super, super important. Let's talk a little bit about MAiD the medical assistants long dying this is this is this is a big topic here in Canada right now. Of course, it's DDA we haven't really taken a stance on this. But I'm starting to see other newsrooms around the world publishing content, saying some pretty nasty things about Canada, how we're now practicing eugenics, and killing disabled and poor people. What are your, or your primary concerns when it comes to this kind of a law?
Deborah Stienstra  18:29  Well, I have oh so many concerns. I think that medical assistance in dying as it's come to be developed through the various amendments and changes and law in Canada is one that privileges white people, often who aren't used to having to be dependent or rely on others, to live their lives and don't want to imagine themselves as people who are dependent and so they see that as something they'd like to avoid. Well, for lots of people with disabilities, we know what it's like to, you know, require supports to live our daily lives, whether it's somebody to check in on us or somebody to wipe our bum or change our diaper or somebody to change the catheter or give us food or whatever. And so many of us don't feel as much like we've lost our dignity when we are in those relationships of care and dependency, but see it as sort of an interdependence. And I think what MAiD is doing is creating space for some people to have a choice and I'm glad that some people have that choice, but in other cases, it's creating a situation where folks who haven't been able to get the supports that they need to live or to live well, whether that's because they can't access housing, and they have chemical sensitivities, or because they've had to live so long in poverty, they're just kind of worn out of trying, or they haven't been able to get the medical supports they need. And somebody offers it to them as an option. And it may be somebody in a relationship of trust, or somebody, like the stories that have come up lately about Veterans Affairs, raising it as an option. So to me, medical assistance in dying in those situations, is something that is not a choice, but is a forced situation, we are not able to provide the necessities of life. So people think that their only option is to end their lives. I've called this other times sacrificial citizenship, where people don't, with disabilities, don't want to be seen as a burden to their families. And they've been told that they're a burden on society, or they cost a lot to take care of. And so they sacrificed themselves, well I don't think that's appropriate. So I think, I think it was really troubling to have the substantial changes to MAiD discussed in the middle of a pandemic, where people with disabilities were the ones bearing the heaviest burden of the pandemic barriers. So I think there are lots and lots of problems with this. And and I think the government, the federal government, pushing forward on MAiD full steam, but dragging their feet on the disability benefit is not a very good sign, right? They should be pushing forward on the disability benefit and dragging their feet on medical assistance in dying.
Evan Kelly  22:20  Yes, perhaps a little bit backwards. So I mean, I've been reading some sad stories, similar to what you've just been discussing. So how through Disability Rights do we protect those who may not see another way out of a bad situation, but death probably shouldn't be their option.
Deborah Stienstra  22:40  First, we need to be there for each other. Pierce support is a really, really important part of living with disabilities. And we all feel stronger when we know we're not alone. And it's hard when you feel like you're just being ground down by your day to day existence. So I know behind the scenes, a lot of these public conversations, my colleagues in the disability movement have been advocating and raising funds so that people feel like they have more choice. But that can I mean, with more and more stories coming out, we can't do that in every case. So I think as advocacy organizations, there's a responsibility to continually prod and push and articulate the gaps in care the reasons why this is happening. I think, folks like cat, Catherine for Z and others have just done an exceptional job in having Gabrielle Peters really exceptional jobs in her in raising the concerns, and making sure that we understand that racialized and indigenous people with disabilities are those who experience more of more of the push toward medical assistance and dying, because they often live with more of the poverty and the barriers to access. So I think, you know, listening and supporting and circulating what those folks have been saying is really, really important. And, you know, for those of us who are lucky enough to get invited to speak publicly, and bring it up at every single person, I mean, when I'm interviewed by the press, I often bring it up, because they don't think of me as somebody who is a maids spokesperson, but I think it is not letting those stories go on tooled, like not letting government's step away from the responsibility of the situation they've created.
Evan Kelly  24:53  So what are some of the biggest challenges you face in trying to elicit change on any particular level of government?
Deborah Stienstra  24:59  Governments are very slow moving, frankly. And they are accountable to an electorate regularly, like every four years, and there's always the possibility of not having the same government or the same government with the same priorities. So, for me, governments are only a piece of the advocacy toolkit. I keep my relationships with those bureaucrats inside governments close, because they're the ones who are more stable. But we also reach out to ministers and, in committees and things like that. But I think it's also about using social media, effectively, it's about sharing information. You know, as a researcher, I have access to lots and lots of information. And part of what I see my job is, is to make sure that what we learn needs to be not just shared in formats that policymakers can understand, but in formats that public health folks want to know. So having factsheets or hot topic sheets, or policy briefs or Twitter, you know, bite sized pieces, so really trying to reach out and raise awareness of a lot of these issues.
Now, in general, how was Canada doing in terms of disability rights? Are we on the right road? And obviously, there's, there's problems and a lot of things we've we've talked here, but are we, are we on the right path? Or does something need to be rewritten? I know that in reading some of your bio, you mentioned this universal planning rather than, I mean, because from a disabilities point of view, we often look at making something accessible, which, you know, that sounds good. But coming at it from a universal perspective, rather than just making something accessible at the moment. So I guess it's a sort of a, a big, big blanket question is, do we need to sort of change our perspective? Or keep working on changing our perspectives? Like how far have we got to go?
Right. So we began this conversation by me saying, yeah, the research is fine, but really, this is personal for me. And what I find is, change happens when people can see a personal link. And they can then imagine, when they begin to hear stories of people who are real human beings and the implications of those stories. So the change, I think, Canada is not dissimilar from many other places around the world. Some good, lots of bad. But I have hope, because the advocacy of disabled people together with their families, or the representative organizations, and really pushes when they, we are out on the streets and in a playground. And you see a disabled child on a swing that's been built to be accessible through using inclusive design. It changes your notion of who are disabled who are children, right, because you now include in your picture, this child who may be in a wheelchair, as part of your neighborhood, and I love to tell a story of somebody, a leader in the disability community, Jim Dirksen who recently died. Jim lived in my neighborhood and Winnipeg when I lived there. And Jim was an amazing character. He was a wheelchair user, he had polio when he was younger, he wore very evocative clothes like you always knew where Jim was, but he made, he just drove around my neighborhood. And everybody in the neighborhood knew Jim. And it was no big deal, right? Like, by being present in the neighborhood in house like all the rest of us, he was our neighbor. And that's I think how change happens is when people with disabilities are part of our communities, when we are included without having to make big adaptations or whatever when we use inclusive design in our homes so that people can visit us who may have mobility barriers or you know, when we have scent free environment so that folks with chemical sensitivities can be at discussions and meetings. Those are all ways that we build inclusion and belonging. And we recognize that disability is just part of the range of what human life is about.
Evan Kelly  30:31  I think you wrap that up nicely. I was gonna say if you do have anything else to add, but I think that just sort of hits hits it right on the head. It's all part of it.
Deborah Stienstra  30:39  I think so. Yeah.
Evan Kelly  30:42  Just one thing that your your book about Canada disability rights, Second Edition, where do people find it?
Deborah Stienstra  30:49  You can find it on Fernwood Publishing's website you can also find it in in some stores. It's available... It's available as audio book, as well as a PDF book and hardcover book. So it was my first experience in having an audiobook which was a lovely thing to have this, a woman read my text with lots of things. So there are a number of ways for folks to do it. But Fernwood publishing is the best place to look. So that's where you can find it on Amazon and all those other places.
Evan Kelly  31:30  I believe I did see it there. Yes. But Fernwood publishing is the main one. Okay, well, today we have been listening to a developmental disabilities encouraging abilities podcast. Our guest today has been Deborah Stienstra. Again, author of about Canada disability rights, Second Edition, disability and woman's advocate and professor of political science at the University of Guelph. Once again, we thank you for joining us today.
Deborah Stienstra  31:54  Thanks so much. It's been a pleasure.
 

Music Therapy - A Universal Language

Esther Thane is an expert in music therapy whose team helps families with children who have autism communicate and reach behavioral objectives while exploring the universal language of music.
 
TRANSCRIPT
Evan Kelly  0:04  So welcome back to DDA's Encouraging Abilities podcast. I'm your host, Evan Kelly. I'm the Communications Manager here at Developmental Disabilities Association. This is where we connect with advocates in the disability community, help tell their stories, raise disability awareness and just be a supporter and advocate for them as well. For those who don't know about us at DDA, we are a community living agency that serves Vancouver and Richmond, we support roughly 2000 clients with developmental disabilities and their families and have been doing so since 1952. So yay, this is our 70th anniversary. We recently came across an article that's actually quite near and dear to my heart. In fact, it's been published a few times over the past couple of years that drum lessons have a positive impact on people with autism. Now, I've been playing drums for over 30 years, so I thought the impact was fantastic. And I just read this on the website disability scoop, so I'm going to read this verbatim from the website about their research, "researchers looked at 36 people with autism between the ages of 16 and 20 with no drumming experience. 19 of them received 45 minute drum lessons twice each week for eight weeks while the rest took no lessons. All of the participants were given a drumming assessment and an MRI scan at the beginning and the end of the study, and their guardians were asked about their behaviour. At the conclusion of the intervention, those who improved their drumming abilities showed a reduction in hyperactivity in attention and repetitive behaviours and they displayed better control of their emotions. According to findings published recently in the journal Proceedings of the National Academy of Sciences. Now that is just drums. So music therapy obviously covers a lot more than just playing drums. So joining us today is Esther Thane who operates ET music therapy in North Vancouver and Richmond, ET music therapy covers a wide range of musical mediums all focused on treating autism and they have been operating since 1996. Esther has been involved in music and music therapy for years and used to teach the Bachelor of Music Therapy Program at Capilano University and has received several awards for her groundbreaking work. So welcome to the podcast.
Esther Thane  2:06  Thanks so much, Evan. Happy to be here.
Evan Kelly  2:09  Excellent. So what initially inspired you to work in the field of music therapy?
Esther Thane  2:14  Oh, gosh, that's a long story. I'm not sure everyone wants to hear it or not? Well, we were very musical family. I mean, my parents are not musical. But it's something that they always pushed my sister and I to do so ever since we were children we were involved in choir, vocal lessons, piano lessons, theory, etc. We were in band, etc. And my sister is a concert pianist. Her and her husband have a piano duo called the Bergman duo here in the Lower Mainland, and I watched my sister as a child, I was younger than her and I watched her practice diligently for four hours a day plus, and thought to myself, that's not what I want to do. However, I realized very early on that music was one of the only things I did know how to do and was good at so at the same time, I didn't want to teach recorder and ukulele in the school. So I thought where do I go from here? Where's the middle ground? And I hadn't heard about music therapy whatsoever. But my parents encouraged me to take a year off of university because I was just, you know, accumulating student loans taking this and that and not knowing what I wanted to do. So I took the year off, and I was living in Germany. My sister at the time was also in Germany, studying music. And at the end of the year, I was supposed to, of course, find myself in that year's time and decide what I wanted to do for a career. But that hadn't really happened. And a few months before I was leaving to come back home, I was going for a walk with my sister and she said, well, what about music therapy? And I just, something inside me went, that sounds good. I had no idea what it was. But I just kind of took a leap of faith and thought that's probably what I want to do. So I did all my prerequisites. I got into the music therapy bachelor program at Capilano. And that first day I remember sitting in class and all of my classmates were telling stories about in the summer time how they volunteered with this music therapist and did this then that. And I still had no clue what music therapy was. But my gut told me this is where I'm supposed to be. So it was really as simple as that, of just, you know, taking that leap of faith that blind faith and as I was going through the program, every week that I progressed in the program, realizing this was, this was my vocation. This was my calling. And the first time I saw a video of kids with autism in music therapy session I thought to myself, and that's the population. That's the community I want to work with. So I've never looked back.
Evan Kelly  5:07  What does music therapy offer that other therapies don't?
Esther Thane  5:12  Well, you know, that's a really good question. And I think what I always say is that any child, like when we're just talking about children, because of course, music therapy you can do with adults, you can do in palliative care you can do with brain injury, there's a myriad of different diagnoses and conditions that music therapy can target very eloquently and beautifully. But when we're talking about kids, I always say, you know, a child will integrate new information at a deeper level, new skill sets at a deeper level, if it's coming from a place of inner motivation. So instead of being taught and told what to do to explore and experience it on their own, and they will integrate that new learning differently. So, you know, for me, I think we are really lucky, and we're blessed. And we kind of have this extra thing called music as our partner in therapy that other therapies don't have. Because for most kids, I mean, not all but for the majority of children, and individuals in the world, all adults of all walks of life, music is motivating. Music is something that helps us pass the time, it makes time go faster, you know, I'm a runner, if I don't have my music with me in my earbuds, I can't run a block. But if I have music the time, just you know, that's why we listen to music on long trips, you know, it warps the perception of time. And I think for kids, they come into the music therapy space, feeling like it is more effortless that they're just having a good time. And they have no idea that we're targeting all of these sensory systems and primary systems simultaneously, just by making active music. 
Evan Kelly  7:00  So it's just you taking it from the point of view that this is fun. This is fun. Yeah. I mean, as musicians, you and me both can attest to that. 
Esther Thane  7:08  Yeah, you know, otherwise, we wouldn't be doing it, right? 
Evan Kelly  7:10  Exactly. Yeah. Now, have you always only just primarily sort of worked with autistic children? Or have you worked with adults? Other neurodiversity? Or PTSD or anything like that?
Esther Thane  7:23  Personally, I would say my wheelhouse is developmental delays in general, all diverse needs from autism to ADHD, Down syndrome, anxiety, some depression, any different developmental conditions, and of course, have worked all the way from, you know, two year olds, to adults, so yeah.
Evan Kelly  7:46  Wow, that's good. Now, your website says this is quoting your website, children with ASD seem to enjoy musical experiences, because they're often good at it. Can you expand on that?
Esther Thane  7:57  Yeah, I mean, I, that is a little bit of a blanket statement. And I don't want to generalize with that statement. However, really, in my experience, that's what I've seen, they are good at it. And what I mean by that is, there is a special relationship with autistic kids and music. It's a medium that they often prefer to live within. They have often more sophisticated musical tastes. They have incredible memory recall, you know, I had one client come in, and we were just improvising the whole session. And a whole week went by, I'd seen multiple other clients in the meantime. And when he came back through the door, he remembered the exact music motif from our improvisations a week prior, I couldn't remember because I had had many different improvisations with lots of other clients in the interim. But they can hear something, they can memorize it, they have unbelievable appreciation often for even just chord progressions and chord structures. And, you know, for me, I was so spoiled by that, that element within their personalities, because I've worked with hundreds of kids with autism before I had my own children. And then when my own children came along, I was like, perplexed, why, why aren't you so excited about music because, you know, as a musician, I am very excited about music, and it's my passion. And it's, it's what really gets me from within, you know, and I was always able to share that joy and that passion with the kids that I was working with, and, you know, my kids, they love music, too, but, you know, they can kind of take it or leave it. They weren't as like, they didn't get the, you know, the goosebumps like I do when I hear certain chord progressions, and you know, and so I think I was really spoiled all those years with with working with them and, and I think that's something that we share on a on a real visceral level.
Evan Kelly  10:04  Yeah, I mean, as you know, again, as a musician, I feel lucky that we sort of connect with music on those levels, and then sort of go and play it and have fun with it. Now, music obviously can be very structured in a lot of ways. If it's sort of written down and written there, there's a song you're supposed to play in a certain way, a certain tempo, a certain loudness. But you've also mentioned improvisation. And it seems to me that kids with autism, appreciate that structuredness. But how does improvisation work?
Esther Thane  10:36  Well, you know, it really goes on a case by case basis, you know, when when a kid comes through the door, we're really assessing informally, what do they gravitate towards? What types of instruments, what genres of music, what kind of musical experiences do they gravitate towards, you know, some kids really like structured music activities, where we're really addressing auditory discrimination and temporal skills, and temporal pacing, and self regulation through the music and other kids just walked through the door, and all they want to do is improvise. So when we're improvising, we're having a conversation. And I think for autistic kids, often, they love music, because it's a non threatening language. And whether you are verbal or nonverbal, we can all communicate through the music. So if a child is saying something, by playing three notes on the piano, the music therapist can take those three notes, they can shadow those three notes and create a whole music motif and structure around that. So we're letting that child know I hear you, in whatever you're doing, if you hit the drum once, we're gonna hit the drum and accompany you, and just play when you're playing and match you. And so in that way, you can have a call and response conversation back and forth. That doesn't require words, it's really the skills of the music therapist intuiting what that child is trying to say, through the music, what their emotive expression is in that moment and matching the intensity. So it's not just about matching the notes, but it's matching the intensity or the intent that we're perceiving behind what that child is giving musically.
Evan Kelly  12:36  Now, you mentioned nonverbal, I assume you work with some nonverbal clients as well. Do you find that music helps them open themselves up a bit? 
Esther Thane  12:47  Oh, absolutely. You know, we can just start out with vocalizing even if we're nonverbal, and we don't have the ability to form language, it doesn't matter in music, right. And we can take a microphone and an amp and we can just vocalize and we can match the client's vocalizations and create again, music around whatever it is that they're vocalizing. If it's a simple hum or grunt or just an ahh or an eee sound. They are it it kind of opens up this whole channel of expression that doesn't require language.
Evan Kelly  13:23  So it'll be almost be anything it needs to be or anything it wants to be. 
Esther Thane  13:26   Absolutely, you've got it. Yeah.
Evan Kelly  13:29  That's amazing. Now, how much of your practice is based on vocal therapy and how much is on actual instrumentation?
Esther Thane  13:36  You know, I would say it's pretty half and half, the therapists, we have it ET music therapy, they use their voice acapella all the time. They use the voice as a primary instrument, but they also use the piano and the guitar. So yeah, it's almost like, I would say almost a third, if you know, actually, it's a third guitar, third piano third voice, but it's always intermixing and changing, you know, the dynamic changes. Depending on each child, you know, some children don't want you to use your voice and they, they don't want to hear you sing, they just want to hear themselves sing. And, you know, some kids are more instrumental based. So again, it's a real, a real case by case basis.
Evan Kelly  14:21  Do you find, I mean are there benefits to either or do they sort of have similar outcomes in what you're after?
Esther Thane  14:29  Well, you know, it depends. If the child, if one of the target goals is language acquisition, then of course, we're going to use more oral motor vocalizations. We're going to use the kazoo to use that as an outlet for expression to explore the voice and making sounds. You know, that whole pre verbal level first, but certainly expression can be absolutely just through instrumentation. You know, we have a lot of kiddos that come in the door and you can tell from the get go. And you probably are the same way as a drummer for so many years, you can you can pinpoint who's the rhythmic guy in the room, right? They come in and they're tapping on the walls already, they're tapping on the doors, and they just need to get things out rhythmically. And especially if a child is having a really frustrating day. And I think everybody can relate to that, having that outlet, that cathartic outlet to just wail on the drums, you know, and feel heard and know that that is an quote unquote, appropriate way to get any anger out, or any frustration that you have, by you know, wailing on a conga drum or something or djembe, where it's going to be heard, and it's going to be accepted by the therapist in the room. And, and we feel better after.
Evan Kelly  15:49  I can attest that that is an appropriate way to get rid of some emotion and energy. Absolutely. In terms of like instrumentation and vocalization is all you know, obviously a part of that. Do you try and teach them musical theory? Or like, Hey, have you heard of this guy? It's Rachmaninoff? Or it's, it's Rush?
Esther Thane  16:13  Yeah, well, you know, I mean, great comparison, all the way from Rachmaninoff to Rush, absolutely. And anywhere in between, you know, somewhere there's a book in there, Rachmaninoff to Rush. That's a great book title. Again, it really depends on where the interests are for the child and kind of a main foundational principle of music therapy, not dependent on you know, any type of person you're working with is that music therapy is going to be way more effective if you are using the client's preferred music. So whether or not you like country music, if the client likes country music, you gotta go there. You know, if they like classical music, then you're gonna go there. And we find that, you know, in general changes can be made in the brain based on music preference. There was a study, I don't know, quite a few years ago with Oliver Sacks. And you know, Oliver Sacks was always a real advocate of music therapy. And, you know, he wrote that that book musicophilia. And there was this one YouTube that I was watching that he did, where he was getting an MRI of, you know, when he was listening to certain music, and it was very well known that he preferred Bach to Beethoven. And what they did was they, I can't remember what university he was at. Well, I won't, I won't try to say what I can't remember, anyway. But what they did was they found a piece of Bach music that he had never heard before. And before that, they played Bach. And they played Beethoven. And they could see that the activity in his brain was less when they played Beethoven. And then they played a Bach piece that was just kind of later on in Bach's compositions. So it was kind of the end, almost nearing the end of the Baroque period, he was kind of touching on some classical and romantic, you know, essences of Beethoven. So he wasn't sure himself if it was Bach or Beethoven. But his brain scans showed it, that he was more lit up listening to the music. So I think his premise at the end of this experiment was that, I may not know or I think I know what I like, but my brain actually knows what I like, and responds more. So I think that's a really key principle, is that where that child wants to go to if they like reggae, if they like pop music, if they like alternative, or Rush or classical. That's where we really start the therapy from, we're always going to use what motivates the child because again, if it's coming from that place of inner motivation, it's effortless. And, you know, I don't like country music. So I'm not going to be receptive if you're playing country music for me.
Evan Kelly  19:12  Maybe some Keith Urban. 
Esther Thane  19:15  Maybe, maybe, yeah, you know, but it's, it's really what is invoking this kind of interest and curiosity, and it really is dependent on where they, what they like, and what they're humming. And, you know, that's one of the first things we do when I'm talking to parents at the beginning. Before you know, just for the intake information is I asked, you know, what kind of music does your child listen to? What are they gravitating towards? What are they dancing to, you know, whether it's a theme song from a kid show or something they found on YouTube or if they like Metallica, then we prepare our therapists. That's what they're going to do in that first session. So that becomes that icebreaker and bridging the gap you know, so we're establishing rapport with that child using the music that they love. Because then they feel heard and understand, understood, you know? 
Evan Kelly  20:07  Now, does that mean you've got to hire people that can play Metallica or Rush? Workout some riffs here for you?
Esther Thane  20:14  Yeah, well, you know, I think a lot of the music therapist life, from a day to day basis is learning different types and styles of music based on their clients. So you know, you whether you like it or not, you kind of have to, because we have to go there so that we're meeting that person where they want to be met in the music. And that's, you know, my curriculum that I created is called meet in the music. And that's, you know, as the name says, it's really about meeting that person in the music and going on this journey together.
Evan Kelly  20:48  Now, like in terms of the instruments, I mean according to the article that I've sort of inspired me to talk to you about this stuff, drums work well, what other instruments do you find work well? Is it sort of whatever? Again, a case by case basis, I would assume, yeah. But uh, you do find that there are other certain instruments that work better and helping the child progress?
Esther Thane  21:08  A great question. And again, you know, there's no magic formula to that it's each child, you know, is is their own case, we try to have at both of our Music Therapy Studios a whole myriad of different instruments for the child to explore from electric guitars, to electric basses, drum kits, we've got a harpsichord in our Richmond studio, we've got pianos, we've got a harp, we've got in our North Van studio, we have a big four foot long tone drum like a slick drum that has lots of different tones. And we can turn the drum over on the side and the child can lie on top of the drum and the therapist is playing on the side of the drum. And they're getting all of this deep vibrational input, which really helps with self regulation, it helps calm their systems down, and it brings them to an appropriate arousal level, so to speak. 
Evan Kelly  22:07  And that sort of brings me to the parents aspect of this, do you find that the clients that come to you, are they... Are they just using the music program in addition to other therapies? Or are they sometimes coming to you because they've exhausted other therapies?
Esther Thane  22:25  Both. Yeah, absolutely. You know, the music therapist is enhancing all of the other goals that the rest of the treatment team has. So you know, if a speech therapist is working on language acquisition and wants to work on ideation of thought, and for the child to formulate their own sentences, and have conversations, we do that in the music. We'll sing different things to each other, will sing questions and answers to each other. You know, an occupational therapist might be working on motor practice and gross and fine motor skills. Well, naturally, we do that, I mean, when you're playing an instrument, when you're striking a drum with a mallet, you're working on eye hand coordination, you're working on mallet grasp. If you're playing an instrument, like small percussion instruments, where like a triangle, for instance, everybody knows what a triangle is, and you know, you're holding the triangle with one hand, and you're holding a mallet with the other. So you're doing two different things with two sides of your body. So I think naturally, we're always targeting multiple goals simultaneously.
Evan Kelly  23:31  Now, how soon after starting music therapy, do you notice changes in your clients?
Esther Thane  23:37  Again, that can really vary. I mean, you know, a lot of parents will say to me on the phone, well, you know, my child doesn't attend, doesn't have a high attention span can maybe only tolerate a half hour, you know, in any activity. And I'll say, well, let's just, let's just give, you know, let's just wait and see how it is in music. Because again, that perception of time, it's evasive, it just, it's gone when you're actively making music. So, you know, for some kids, they come out, you know, the withdrawn kid just comes out and starts to blossom and express themselves in different ways. Because it's a different outlet than when we, the rest of what we see in society where we're just kind of walking and talking and having to act a certain way. And in music, we can express ourselves creatively, some kids, you know, they progress in different ways. You know, I've had clients that have been very anxiety ridden, very disregulated. And all they do is scream for the first you know, couple of sessions or even months or it's hard to get some kids even to come into the space to go over that threshold of the front door and go into an unknown environment. But then they don't want to leave you know, so it really depends, you know, some kids start vocalizing and saying words for the first time, after a few sessions, some kids, you know, it'll take longer, but they're also very highly motivated to come back. Because again, they're building this relationship with the therapist in a different way where it's not, you know, sit down table work here, we've got to go through these exercises, etc. And, you know, kind of coming back to one of your original questions about do we teach theory or music, that's often a natural progression that will be incorporated in the session. So, you know, some, some kids are with us for many, many years. And after they've kind of gone through the traditional music therapy route of different activities and improvisation. As they grow up, it kind of naturally evolves into music lessons, but it's more adapted music lessons, where, you know, the therapist is very knowledgeable of, you know, what things are going to trigger the person, if they have any auditory defensiveness, you know, do they need frequent breaks, because they need to do some spinning or movement, or stimming of some kind, you know, we have that flexibility as music therapist, so an adapted music lesson looks quite different than a traditional music lesson.
Evan Kelly  26:23  Now, do you find that they're permanent changes in emotional control under behaviour through music therapy? Or is this something that you find things to keep going for a longer period of time?
Esther Thane  26:33  No, you know, I think that because again, I know I keep kind of coming back to this same point, because they are motivated from within, because there is a natural curiosity to explore music, a child's attention span can naturally just be extended, right? We know that a child when they're interested in something, and they're focused, they can focus for hours, right? If it's something that intrigues them, and so the more often you're doing this, the more that's going to generalize and carry over into when they walk out the door. And they're going to be able to regulate for longer periods as well. You know, and we always encourage parents, you know, to do different things at home and use music, in day to day tasks, anything that's going to make it more fun, whatever it is that the child doesn't, you know, warm up to immediately you can add this whole level of music to it. And, you know, it's just, I don't know why I just thought of this, but thinking about, you know, Mary Poppins, when they were cleaning the room, and she started singing, you know, a teaspoon of sugar makes the medicine go down, right, and singing that song, all of a sudden, the task of cleaning the room was easier. You know. So I think it's marrying music with things also that are not preferred tasks to do, kind of alleviate any anxiety around it, or stress and make it a more fun experience. You know, there's, there's a reason why in every single culture in the world, throughout the history of mankind, there's music, you know, I think the oldest instrument is a flute, they found 30,000 years ago, you know, there's something inherent inside human beings that we want to express musically. We have rituals, in our cultures, there's no culture that doesn't have music, be integral, we always have found time, even if we're chasing, being chased by dinosaurs, or well, okay, whoever, you know, we feel this need to express through art in general. And, and so I think that is something that's universal. So that's why music therapists could work with a child who comes from an entirely different country and speaks a different language. And they can still build a relationship through music. It's a whole language of its own. And there aren't a lot of activities in the world that you can do that.
Evan Kelly  29:01  No, there definitely isn't. Now, what ongoing work in your field right now has you the most excited?
Esther Thane  29:10  Gosh, I would say, what makes me the most excited is bringing it to everyone else in the world to realize that, you know, yes, there's the profession called music therapy. And yes, people go to school for it and get lots of training and medical and psychology and therapy and blah, blah, blah, blah. But what excites me is, creating this, this level of awareness that people realize they can be doing this, they can do a level of music therapy for themselves, they can do that at home, that we don't own the therapeutic benefits of music. And you know, I think that a lot of that has been lost in our culture. You know, we pay money to go to concerts and sit quietly and listen to music. You know, we don't make music anymore. In the household, you know, 100 years ago, there was always a piano or a violin or accordion somebody in the family did that. And after supper, that's what you did. You sat around and you made music. That was your MTV that was I mean, even that's dating us, a little bit, of but that was our technology that was our devices, you know, was making your own music and expressing that. And I think, you know, for parents to get back into that to feel confident that they can use their voices with their children that you can vocalize and sing and, you know, we get shut down at a very early age, often in music education, by being told by teachers, especially if you were in a choir, I'm sure there's people out there that can relate to this experience at a young age, if you're in a choir, and the teacher said, just lip sync, right? You're tone deaf or you're not singing the right. So just pretend that you're singing, and those old truths, they stay with us throughout our entire lives. And then we have our own kids. And we're convinced Oh, I don't have a good voice. I can't sing around my children. But we're forgetting that the voice is the first way that your child connected with you, whether you're a father or a mother, you know, the, the auditory system is the first sensory system that's fully developed or gets developed at four months gestation. So that child has been listening to the mother's voice inside in utero, all the time, they are hearing the father's voice through the womb for many months before they come out. So when you speak, when you sing, you know, chances are that's the most beautiful sound your child has ever heard. Because that's what is familiar with them. And so that should keep going, you know, and, and being able to just free yourself of any sort of criticisms of your voice, you know?
Evan Kelly  32:01  I could see that being pretty daunting for parents, because I know lots of friends and fellow parents who are like, Oh, I haven't got a talented bone in my body. The idea of, you know, offering music to my kids isn't difficult for me. I'm not a great singer. But they know, I play drums and I can, they know, I still play music in a band. So they know that element is there in their life. And as much as I'm trying to push it onto them, yeah, forget it. They're not interested. Yeah. But it's there, you know, and we, my partner, or I, our partner and I are always playing music in the house. So we're always trying to make sure that that's there. Now. ET music therapy already has quite a big team. How do you see your company changing in the next decade?
Esther Thane  32:41  Well, you know, I think we're always expanding, we just hired two new music therapists and, you know, we've got the two studio locations. I foresee in the future, you know, that maybe we're going to expand to another studio location, you know, right now we kind of serve the whole lower mainland and depending on where you're situated, where it's closer to, you know, where's easier to go to, is it Richmond, our Richmond studio or North Vancouver studio. So we have a lot of clients that are in the Vancouver area, but travel to us because we are open seven days a week in both studio locations. So, you know, that makes a little easier for parents to travel on the weekends. But certainly expanding, growing, getting a new site, maybe, you know, all of our therapists are using, as I mentioned before, the curriculum that I've created meet in the music, and it's on a cloud software therapy and documentation software called Unitas TI. And there are music therapists now that subscribe all around the world that are using that curriculum with their clients in Australia, in the US and across Canada. So just you know, helping to spread the word and get music out there to the massesm, really.
Evan Kelly  33:56  We're doing what we can. Now, do do clients need ta referral? Or can they just approach you for services?
Esther Thane  34:03  They can just approach us, no referral is necessary whatsoever. On our website, there's a Contact Us form, and they can just fill it out. And then I usually have a nice chit chat with them on the phone and get to know who their child is, you know, what their preferences are, their challenges, their strengths. And then we try to see if we can fit them with a good music therapist and a good time that you know, they can come for weekly music therapy.
Evan Kelly  34:31  That sounds really good. How do people get in contact with you?
Esther Thane  34:33  They can go to the website. It's www.etmusictherapy.com
Evan Kelly  34:41  Well, that's fantastic. That about does it. We have been speaking with Esther Thane and she is the creator of ET music therapy. That's a music therapy organization that caters to families and children with autism. They've been around for how long you've been around for about?
Esther Thane  34:57  26, we're on our 26th year yeah. Absolutely.
Evan Kelly  35:01  You're going strong and in North Vancouver and Richmond, correct?
Esther Thane  35:04  Correct, correct. And we see all diverse needs. You know, certainly our specialization is autism. But we see all different, all different walks of life.
Evan Kelly  35:16  Thank you very much for joining us today.
Esther Thane  35:17   Thank you.
 

DDA talks to $10 a day childcare advocate Sharon Gregson

DDA operates nine child development centres in Vancouver and Richmond. As the province shifts towards a $10-a-day childcare system, we reached out to childcare advocate Sharon Gregson about where we are now and where we need to be when it comes to reaching that goal.
 
TRANSCRIPT:
Evan Kelly  0:04  Welcome to DDA's Encouraging Abilities podcast. I'm your host Evan Kelly. This is where we connect with advocates in the disability community or the community at large and help tell their stories, raise disability awareness and be a supporter and advocate for them as well. For those who don't know about DDA, we are a community living agency that serves Vancouver and Richmond, we support roughly 2000 clients with developmental disabilities and their families and have been doing so since 1952. So if you can do the math 2022 is actually our 70th anniversary. Now today we are talking about the province's move to a $10 a day childcare system. It's something the NDP has been promising for some time and with the federal government's assistance is moving forward, at least in a pilot project. Child care, of course, is also a vested interest for DDA, we're not just about supporting developmental disabilities, we operate nine inclusive Child Development Centers in Vancouver and Richmond. So our guest today is Sharon Gregson. She speaks for CCCABC, or the Coalition of Childcare Advocates of BC. And she's also part of the $10 a day campaign. This group, of course, has been advocating for $10 a day childcare for some time. So thank you for joining us, Sharon.
Sharon Gregson  1:17  It's entirely my pleasure, especially as DDA operates such high quality childcare program. So I'm glad to be part of your podcast series.
Evan Kelly  1:27  Oh, well, thank you very much for that compliment. Just right off the bat. Yeah, that's right, I mean, there's many childcare providers have been part of this, this pilot program, where you have to apply for it. And there are numerous childcare operators who are now part of this $10 childcare program. We are not yet unfortunately, I think we're going to be doing one of our locations at play house to sort of test that because we'd like to give some feedback as well. So that's sort of where we are with that, just so you know. So Sharon, right off the bat, what really drew you to this kind of advocacy work?
Sharon Gregson  2:09  Like many advocates, I come to it through lived experience, I was a young mother, with an infant and a toddler. And I wanted to go back to university I was in my early 20s. And as a single mom, I was shocked to discover that childcare was neither available nor affordable to a young student like me, and I became an advocate, and an activist overnight. And as my children got older, and my family grew bigger, I continued, and changed my career to align with my advocacy and the importance that I saw for children's rights and gender equity and economic health, for childcare to be a better investment by provincial and federal government. So I've been doing this now for 30 plus years, and my commitment is as strong now as it was when I first recognized the problem.
Evan Kelly  3:09  Well, 30 years is quite a long time to be at this. So and just in a general sense, how's the landscape of childcare doing? Are we doing better now than we were?
Sharon Gregson  3:21  There's a huge, huge change from 30 years ago. So when my two oldest sons were young, there was very little government support for childcare, it was really all about user fees. There was very limited access. It was really considered babysitting, professionals in the sector were looked at as babysitters. And so over the last few years since 2018, there's been a huge shift, both on that the provincial and federal governments to recognize the workforce behind the workforce that is childcare, the importance of a good early start for children, gender equity issues, so yes, a massive change. And really, that's coalesced around the $10 a day child care plan. And we don't talk, $10 A day sites now are not prototype sites. They are now part of the emerging childcare system that is growing in BC and across the country.
Evan Kelly  4:25  Now, so in your view, what's the biggest motivating factor to achieve a $10 day childcare? Are we, is this just simply a monies game? Or is there something more to it?
Sharon Gregson  4:35  Well, if governments were going to make good investment decisions around childcare, because it's the right thing to do for children, families, they would have finished 50 years ago when the status of women report first recommended a national daycare act. And so it's really been the impetus of COVID perhaps, it's been the issues of growing around gender equity. And, frankly, the cold economic issues that have, I think, spurred governments to actually make the investments that are necessary. And of course, we, as advocates, we don't only focus on the economic issues. But we have had to make the economic argument for why this is a good investment for senior levels of government in order for it to start to happen.
Evan Kelly  5:28  Now, in your view, is the BC government's roadmap, current roadmap adequate?
Sharon Gregson  5:36  Well, we always knew it would take 10 years to build a childcare system, and it would take sustained government commitment through those 10 years. And so we're in year four and a half right now. And yes, we have seen a significant progress since 2018. We've seen fees that are lower. We've seen new spaces, we've seen wage enhancement for educators. And so yes, there's been significant and measurable progress. Has government got everything right? No. Are they moving quickly enough? No. Is there so much more work to do? Yes. But we are on the right track now, particularly with a $3.2 billion federal commitment.
Evan Kelly  6:18  Now, so are you pushing to make this full on legislation so that other governments can't overturn it? How much more work needs to be done in this regard?
Sharon Gregson  6:25  So two new pieces of legislation were introduced around early childhood educators, and around Early Care and Learning. And so that was a significant step forward to bring disparate pieces of existing legislation together into two streamlined pieces. There is more to do to embed the rights of children, all children to access services that their families choose for them. And there's more to do around developing the provincial wage grid for early childhood educators, expanding spaces in the public and nonprofit sectors. And of course, dealing head on with the most significant and immediate crisis, which is recruitment and retention of early childhood educators.
Evan Kelly  7:10  Yeah, that's, that's a huge part of it. I mean, not you did mention the provincial government recently created new legislation around ECEs, the Early Childhood Educator act to improve oversight and retention, what in your mind, does that do for that profession?
Sharon Gregson  7:27  Well, it's it makes it clear who can call themselves an early childhood educator, which I think is helpful in the profession. And it also indicates some ways in which credentials can be recognized from other jurisdictions. There is a new nominee program to attract international educators into British Columbia. But we actually need a more robust strategy, we need to think about student loan forgiveness, we need to think about financial incentives to attract people into the sector, incentives to keep people in the sector more than just bursaries and the wage enhancement, we need to have a review of overall compensation. And part of that is the provincial wage grid.
Evan Kelly  8:15  Can you expand on the provincial wage grid a little bit?
Sharon Gregson  8:18  Right. So right now, early childhood educators are only required to be paid the minimum wage plus the $4 an hour Wage Enhancement if their employer has applied and is successful in receiving that $4 an hour. And that is, that only brings educators up to $19.65 or something an hour, which is not sufficient for the level of education and the level of responsibility that goes along with that in the profession. So a provincial wage grid would take into account level of education, whether it's a certificate or a diploma or a bachelor, as well as years of experience in order to ensure that we are competitive with the education system, so for education assistants, for example, where often childcare staff leave the childcare sector to work in elementary schools. And so we need to make sure that the childcare sector is attractive for people to enter into retain, to stay in.
Evan Kelly  9:26  Yeah, and I mean, talking about, you know, money that we were talking about you know, financial incentives for ECS just to crunch a few numbers, I went to numbeo.com. It's a website that compares the cost of living around the world is that this one, the numbers I have from October 2021, so they're a little bit skewed because it hasn't taken into the current rate of inflation or anything like that. But it says the average monthly cost for single person in Vancouver is $1,200 that does not even include rent. And so if you add it add the average one bedroom $2200 plus the $1200, you're looking at $3,400 a month, whereas a full time ECE II can expect to make approximately $47,000 A year before taxes. And that's $3,900 before income tax benefits and pensions, I mean, what, what more do we need to do to tell the government say, 'Look, this is just not feasible.'
Sharon Gregson  10:23  In the Canada wide agreement that British Columbia signed with the Government of Canada last year, there is in the Action Plan, the commitment to develop a wage grid, and in 2020, the advocates along with ECEBC, the professional organization recently representing ECEs, came together and released a report, a wage growth report suggesting then that the starting wage for ECE should be $26 an hour. And for those with their infant toddler and special needs certification, it should be $29 an hour, that's starting wage. And that's two years ago. So we are right now in the process of reviewing those, those figures. And we'll be recommending to government, new starting wages. And of course, starting wages are just the starting place and years of experience would ladder on top of that in a wage grid. So we absolutely are aware as other advocates from across the country, because this is not just a BC problem. Recruiting and retention and low wages are an issue across the country.
Evan Kelly  11:35  Yeah, absolutely. But at the same time, there are obviously cheaper places to live in Canada. Are you seeing a drain from, in this profession to more affordable parts of Canada?
Sharon Gregson  11:50  No, I'm not aware that that is an issue. I know that there are people who might be moving to other parts of British Columbia. I personally haven't heard of childcare educators, early childhood educators moving to other parts of Canada, specifically around us this issue.
Evan Kelly  12:10  Now, what about the current inflation? Is that being built into what you're advocating for?
Sharon Gregson  12:18  Absolutely, yes. So the the wage rates that we're talking about that would be any provincial wage rate would be would be tight to current context. And so as we are looking at updating our wage grid report, absolutely. Inflation is something that we take into account as are the effects of COVID and the demands that are put on the sector. So these things have to be taken into account.
Evan Kelly  12:42  Yeah, absolutely. Now going back to the the actual $10 A Day campaign, like for two kids, for example, $10 a day works out to about $400 a month, you know, from my experience, I've had two kids, they're older now. It's better, of course, but given that the cost of living varies depending on where you are in Canada, do you think this is a little out of reach for some still?
Sharon Gregson  13:13  So you're right, $10 a day is $200 a month. And so the the plan actually call for a maximum fee of $10 a day. And so for families that are low income, or have other barriers, then there could be no fee at all. And in fact, we specify that for families with an annual income of $45,000, a year or less, there will be no user fee at all. So the fee is a maximum of $10 a day.
Evan Kelly  13:43  So in terms of this, this no user fee, is that something that's been in British Columbia already, or is that sort of new part a new part of his program?
Sharon Gregson  13:55  So that is in effect now. So for families that are low income and are enrolled in a toddler program, if their fees are, for example, $1,200 a month, they wouldn't be paying any any user fee at all. That's achieved, that's currently achieved through the affordable childcare benefit, which is an income tested subsidy.
Evan Kelly  14:21  Okay, so that's good. So that's, so they don't, there are no other subsidies that you're pushing for anything like that at this point?
Sharon Gregson  14:27  Well, when we have a truly accessible system, where the maximum fees are $10 a day and families have the access that they need, not just Monday to Friday, nine to five, but for extended hours or to accommodate shift work or or part time work, then we don't need a lot of other subsidies and funding streams for parents to have to navigate. If there's a, an affordable fee to start with, then it's much easier to think about how to make it even more accessible for low income families, or those with additional challenges. When the maximum fee is $10 a day, where it puts us in a different context of affordability and accessibility.
Evan Kelly  15:16  Now, the government is also trying to, or they've said they're going to add an additional 30,000 spaces that the NDP is promising. I mean, it's, there's going to be a workforce issue that I would see moving forward, and where, where are we going to get all these people that are gonna work and support these spaces?
Sharon Gregson  15:39  I just want to correct you on one thing he said as the NDP that is, that is promised 30,000 new spaces, it's actually the government of British Columbia and the Government of Canada in an agreement to make this commitment. So it's not a political party commitment, it is a government commitment. And so we would expect that that would remain whoever is in government, because it was officially signed and is in effect. So you're right. 30,000 new spaces between now and 2026, is a lot of new childcare programs. And that's why I mentioned that the recruitment and retention issue has to be front and center. Because there's no sense, creating new programs and even making them affordable if there's no qualified educators to work in those programs. And so our roadmap to $10 a day, puts the workforce front and center and provides government with some suggestions on an urgent transition strategy for encouraging more young men and women to enter the sector, and ways in which to retain educators in the sector, particularly through that wage growth that we were talking about.
Evan Kelly  16:52  Now, caregiving, and early childhood education, it's largely done by women, how do we attract more men into the system?
Sharon Gregson  17:01  Well, I think as we saw in nursing and teaching, that when the respect and remuneration are lifted up, then it becomes more attractive for men to enter the sector.
Evan Kelly  17:17  Now, more of a broad question, as a feminist organization, what do you feel are the most urgent steps the BC government can take to address gender inequality?
Sharon Gregson  17:28  Right, so that's a great question. And it really for us, it really does center around investing in delivering a $10 a day child care plan. And that, that is multifaceted because that then addresses gender equity, through respect to remuneration, for the mostly women who work in the sector, it creates gender equity for women who need to use childcare programs, so they can fully participate in the workforce and in their communities. And respecting the leadership of childcare managers and directors and those who are in leadership positions in childcare as well respecting their contributions. And so this is, childcare really is front and center for for gender equity on multiple fronts.
Evan Kelly  18:30  Now, we mentioned early on that there's, there's a handful of organizations, or sorry childcare providers that are involved in the $10 a day project right now, are we, are you concerned that that's going to take a long time for everybody to get on board? Are we like, are we seeing like even DDA we're hearing of you know, parents are wanting to jump into our Playhouse and one that's taking part in this sort of creating a bottleneck at others. I guess what I'm asking is, is this short term pain for long term gain? Where some parents are going to spend 10 bucks and others who are going to spend the full price.
Sharon Gregson  19:12  So when the $10 a day sites first started, there were 2500 spaces across the province. Now there are 6500 spaces, and by the end of this year, there'll be 12,500 spaces. So getting to about 10% of childcare in the province will be in 10 day programs. But for families, and this is really important, for families who are not fortunate enough to be in a $10 a day site yet, other childcare programs are going to have the option to reduce their fees to an average of $20 a day by the end of this year through the childcare fee reduction initiative. So it's getting to 10 a day for more families, so hopefully DDA will be participating in that fee reduction initiative. And so you'll be able to reduce the fees in your other programs to an average of $20 a day by the end of this year. Now, that doesn't apply to school age yet, the school age fee reductions come into effect September 2023. But this will be good news for families who are not yet in 10 a day programs. I think it's also important to recognize that the agreement that the BC government signed with the Government of Canada commits to achieving $10 a day child care across the province by 2026. So $10, a day is expanding. And in the meantime, there's the $20 a day average, that will be in effect in other programs if the childcare provider applies to be part of the program.
Evan Kelly  20:50  So from your perspective, what is your focus now, now that we've got a $10 a day Child Care coming in by 2026? That should be across the board. What is your focus moving forward?
Sharon Gregson  21:01  Well, we have to make sure that these government commitments come to fruition and we have to make sure that all the decisions that government makes, moves us in the right direction of the $10 a day system. So the goal is to have a system where childcare is not just a product in the marketplace, it's not considered a business or an industry, it's actually a public good. And that taxpayer dollars are spent in ways that build a public system that serves children and families and serves our economy in the best possible ways. And so that's really a focus, is moving childcare out from being a market commodity, to being a public good. And having a system that all children have access to if their families choose it, it's high quality, where educators are respected and fairly compensated. So all those things are happening at once. It's, there's a lot happening for childcare this year, and in the years to come.
Evan Kelly  22:05  I think that about does it. Anything else to add today?
Sharon Gregson  22:09  I'd love people to go to 10aday.ca. And sign the petition to support this campaign and this work and you're always welcome to become a member of the coalition of childcare advocates of BC.
Evan Kelly  22:22  And I'll add that DDA and their childcare centers are fully behind the $10 a day childcare program and we hope to be fully involved by 2026. You have been listening to DDA's Encouraging Abilities podcast Our guest has been Sharon Gregson from the coalition of childcare advocates of BC and the $10 a day campaign, the topic of course, $10 day child care and the future of early childhood educators. Thank you for joining us Sharon.
Sharon Gregson  22:48  My pleasure. Have a great day.
 

Accessibility Needs to be Universal: A Chat with CANBC Founder Heather McCain

Heather McCain is the creator of www.canbc.org, a disability advocate website born out of need that offers workshops and support for those in the disability community and the disability Queer community. As Pride Month comes to an end for another year, it's good to raise awareness that people in LGBTQ community who identify as disabled have other concerns they often need to deal with.
 
TRANSCRIPT:
Evan Kelly  0:04  So welcome back to DDA's Encouraging Abilities podcast. This is where we connect with advocates in the disability community, help tell their stories, raise disability awareness, and be a supporter and advocate for them as well. Now for those who don't know about DDA, we are a community living agency that serves Vancouver and Richmond. We support roughly 2000 clients with developmental disabilities and their families and have been doing so since 1952. That means it's our 70th anniversary this year. So today we are joined by Heather McCain, they are the founder of creating accessible neighborhoods or CAN for short, you can check out their website at canbc.org. They also run the chronically queer support group, which is a group designed to offer advocacy and support to people in the LGBTQ community who identify as disabled either physically or cognitively. Now, of course, June is pride month. So I feel it's a great time to talk to Heather about accessibility in our own neighborhoods, from the queer perspective here in the Lower Mainland. So welcome to the podcast. Heather. 
Heather McCain  1:07  Thanks for having me. 
Evan Kelly  1:08  Excellent. So tell me a little, just to tell the audience a little bit about yourself, just right off the top here.
Heather McCain  1:15  Sure. So I am disabled and neurodivergent. And I founded Creating Accessible Neighborhoods in 2005, after my own experiences with ableism and inaccessibility.
Evan Kelly  1:32  And do you know, I might be bouncing around your website a little bit because you just call you call yourself a crip doula. Can you expand on that?
Heather McCain  1:40  Absolutely. Crip doula is a disability justice term for someone who helps disabled people navigate our complex systems, whether that's government, medical, whatever, provide resources, support, and build communities. And it's a, it's a term that is given to people by community, and members of chronically queer gave this title to me. And out of all my titles are just the one I'm proudest of because it is people like myself that I have positively impacted who have given me this title.
Evan Kelly  2:18  So it's a well learned title. That sounds great. And so you started CAN or you know, it's a great acronym for a website, by the way, creating accessible neighborhoods. CAN, you started from your own experiences of ableism? Can you tell me, can you expand on that a little bit for us?
Heather McCain  2:36  So I use the power wheelchair at the time, and I was trying to get about my community. But where I lived in Maple Ridge, the bus came once an hour. And at least half of the time, the bus drivers would lie and say that the ramp was not operating, because they just didn't want to bother with someone in a wheelchair. And obviously, that made it very difficult to get around the community and very hard to find any kind of day when the buses only came once an hour. And I wrote letter after letter to TransLink with no response. And then someone kind of jokingly suggested to me that I should just start my own organization. And after another letter came back with no response, I thought, okay, well, at least look into it and started, CAN, I wrote the exact same letter, but this time was executive director underneath my name and got a response a week later.
Evan Kelly  3:30  Funny how that works sometimes, isn't it? 
Heather McCain  3:33  Yeah, it's not how the system should work, or what you should be required to have before you're paid attention to. 
Evan Kelly  3:41  Yeah, it's a bit of a sad reality in our society sometimes, isn't it? Now it seems, it seems that CAN is, you know, since 2005, has expanded a lot. I mean, you you've got lots of projects. So what are some of the current projects you're working on with CAN?
Heather McCain  3:56  Yeah, so our current focus is on education. We have a series of workshops that we were doing, and they include breaking barriers, crip kindness, disability awareness, disability justice, gender and sexuality, impostor syndrome, and two queer and trans histories, one for BC and one for Canada. And we're also part of a variety of committees. For example, we're working with the Vancouver Writers Festival on increasing the accessibility of the festival. And we're working with the UBC on some focus groups on how to have lived experience more within the curriculum for medical students.
Evan Kelly  4:41  Wow, it's a lot of, that's a lot of outreach. So you offer, obviously offer quite a variety of workshops. Are these open to anyone who wants to learn? Do you bring your own experts in a variety of fields?
Heather McCain  4:53  So what we do is we have facilitators within our organization and we have both private and public. Currently we're doing private, because we're so booked. But we will be adding public in August. And we're looking forward to doing those and having it open to all sorts of people. Currently, we're working with organizations like Fortis BC and Bill Reid Art Gallery, and talking to these organizations to try to improve the equity and accessibility within their organizations.
Evan Kelly  5:27  Now, do you, do you on some of these you bring into the office, you said you bring in some facilitators and some other experts. Do you bring your own expertise to these things? Do you spearhead some of these yourself?
Heather McCain  5:37  Absolutely. So I'm facilitator for quite a few. And we have a co-facilitator, Harmony Bongat, who is a single mum, Filipino, disabled neurodivergent, has, you know, real experience in a lot of these intersectional issues that we need to discuss and say, co-facilitate gender and sexuality, the queer and trans history workshops, they actually created and research. And they're quite excited about those, those came about during the pandemic. And it's been great to be able to share our history more.
Evan Kelly  6:15  Yeah, for sure. So when did you begin the chronically queer group meetings and what inspired you to do so?
Heather McCain  6:21  So the chronically queer group meetings were actually originally through the organization Qmunity, and they were looking for a facilitator. And I started about three or four years ago. Unfortunately, we, I heard from a lot of people within that group, that there was a lot of ableism and inaccessibility within the organization. And so for a year, our group tried to work with the organization to improve accessibility. And unfortunately, that did not result in any changes. And the group voted to move away from that organization until a point at which they are going to center disabled people and accessibility. And so the group asked to come under the umbrella of my organization, creating accessible neighborhoods, and have been running that since. And it's a great group of people. It's wonderful to be in a room with other people who have shared experiences where you don't have to explain yourself, or you're not being told you're too sensitive, or you know, that you shouldn't take certain things a certain way. And you can talk to people about how hard it is to navigate the systems that are working against us.
Evan Kelly  7:36  Yeah, that's definitely an ongoing dialogue. So in what ways right now from your point of view, is BC succeeding in supporting the disability community? And sort of what successes have you seen in recent years with your actions?
Heather McCain  7:51  Yeah, so we have seen some changes through our advocacy to the Disability Program, the increase in what people are allowed to earn on disability, as well as things like crisis funding for someone if they have to move really quickly. There's been a lot of conversations about how to make the system work better, particularly the interactions between people on disability and the staff. And we have heard from members that there have been slight improvements, obviously not enough, and not where we would like it to be. But it's been nice to see some of the policies change. I think there's a lot more room for conversation with BC, we were part of the BC Disability Act consultations. And I think, you know, that's moving in the right direction. I think it didn't necessarily encompass everything that we had hoped for. But the fact that, you know, this is something that government is thinking about is excellent. And part of why we do this work.
Evan Kelly  9:00  Now in a more of a sort of, dialed down sort of way as to how well is BC meeting the needs of the queer community? And when it comes to accessibility, where are we falling short?
Heather McCain  9:12  Well, I think where we're falling short is often we're asking people to divide themselves. And so we have accessible spaces for disabled people, but we don't have accessible spaces for queer disabled people or black disabled people or incarcerated disabled people. And so we really need to look at having accessibility across the board. And I think BC relies a lot on the organizations for disabled people to provide accessibility and doesn't think about that broader community focus. So we definitely need to, you know, really incorporate that intersectional lens in whether it's for people who are queer and trans or whether it's for black indigenous people of color. You know, we really need to make sure that organizations and government understand people with disabilities are everywhere.
Evan Kelly  10:05  Yeah, I read a really interesting sort of meme the other day, and someone had this idea that, you know, creating something that's accessible, doesn't sort of go far enough for humanity at large. It's more about looking at it a lens through a universality, rather than creating, like, oh, we've got accessible building codes. Well, okay, well, that's great. So we're, we're at that point, we're looking at maybe a couple of groups so that they have access to whatever we're building. But what about the idea of just universal lands? Looking at everybody, when we do anything?
Heather McCain  10:40  Yeah, absolutely. And I think, you know, that's one of the things we talk about is that access is for everyone. And what improves life for one type of population improves life for others. So if you make condos and rentals accessible to people who have wheelchairs, you make it accessible to people who have strollers. And so it's really important that we look at this lens of, as you say, universality. And I think one of the most important things that is often missed in accessibility is options. You know, people want to make accessibility be one thing. But to people with disabilities, accessibility means different things. And we need to have options. Because you can have five people in a wheelchair and their abilities within that wheelchair are completely different, and what accessibility they need is different. And so yeah, I think we need to have more conversations about what everybody requires.
Evan Kelly  11:43  Yes, absolutely. Now, you mentioned gatekeepers a lot on your website, can you explain what that is?
Heather McCain  11:49  Yeah, absolutely. So gatekeepers, are people who whether intentionally or unknowingly create barriers to access. And so the organization was founded because of experience, my experiences with gatekeeping, which was a bus driver who drove an accessible bus that had an accessible ramp, who then said to me, that the ramp was not operating, therefore making the bus inaccessible. And so this is really frustrating because disabled people had to fight so much just to get the access on the bus. And then here is somebody who doesn't want to bother with someone who's in a wheelchair, and so he can cut off that access. Another example is that sometimes there are places with accessible washrooms, but you have to walk all the way back to the help desk to get a key. Now, first of all, this is difficult for a lot of people who have mobility issues, and that additional walking is difficult. There are people who don't have evident disabilities and have to talk the people at the help desk into letting them have the key to the washroom. Another example is, we spoke to a couple of universities that lock their elevators, and will only give the access key to certain people and some disabled students were unable to get that key because they didn't fit the image of what the university thought disabled people who need elevator access are. So those are all examples of where there is access, but then people are creating barriers to that access.
Evan Kelly  13:32  Wow. So in 2022, here we are today in June 2022. Are there fewer gatekeepers these days, in your mind? Are we doing better at this?
Heather McCain  13:42  I certainly think that there's more conversations about how people can be gatekeepers. And I also think that there are a lot more empowered disabled people who are willing to speak up when they see that gatekeeping which then allows the organizations and individuals to consider the gatekeeping and, and hopefully to move forward, unfortunately, some are told about the gatekeepers, and still don't do anything. But I think that's been a really great thing is I see so many more people advocating for themselves feeling comfortable to say, I am disabled, and I need this. And I think that really comes from the community support. However, as great as that is, I wish that disabled people didn't have to advocate for themselves so much, that the gatekeepers just didn't exist. And part of that is the organizations doing the work. And we do see a lot more organizations that are actually doing disability awareness workshop. We encourage organizations to have accessibility protocols. And this is something that helps everyone be on the same page, whether it's staff management clients, and that's something that has helped eliminate gatekeepers. Because I think to a large extent, it's just not understanding accessibility and how you're impacting another person's life.
Evan Kelly  15:06  Very true. Now, but for me, I think it goes even a step further and probably for you, too. It's, you know, it's not just understanding, it's like, how do we get people to get past understanding and get towards empathy? That's the biggest one for me.
Heather McCain  15:24  Yeah, I mean, I think one of the biggest barriers is that people are overwhelmed right now, you know, there's so much that's going on with the pandemic in the world. And within diversity, people often are overwhelmed with diversity, because, you know, what kind of diversity are we learning about, and then you look at the disability community, you know, if I focus on people with cognitive disabilities, what about people who are deaf or blind or, have mobility devices, and it can seem overwhelming. And so I think one of the things is, like, really breaking down this information to make it more accessible to people to make people realize the joy of learning, and this is something we really focus on a lot within our gender and sexuality workshop, is like, it's fascinating to hear people's stories. And so that's how we connect with people, is we use our members' stories, their lived experience. And we find that that connects to people better, because when they leave, they may not remember the details, but they do remember how they felt. And they do remember their reactions, and then that helps them to remember to actually make change the next time, because they have someone specific that they can kind of bring to mind, you had this experience. And it's really important for people to understand how their actions impact others.
Evan Kelly  16:57  Yep, definitely. And it's, you know, it's, it's one of those things where, you know, I think that it starts at home, you know, it's, let's take these workshops, let's learn from those who are living these lives, let's empathize with them. But you know, let's be, let's start that at home with our kids and getting them to understand.
Heather McCain  17:17  I think that's great, empathy, however, does have its limits. Because to an extent, empathy is trying to imagine being in someone else's shoes. And, you know, as a non disabled person, it is very hard to actually imagine being disabled. And so I think one of the key things is to listen to people of that identity, you know, people try to imagine what it's like to be disabled. And unfortunately, that's what government has done for so long. And then they make decisions and create policies that don't actually meet our needs. Because they're imagining a life in a different way than is actually the realistic experience. But absolutely, starting at home, make Google your friend, visit your library, you know, make sure that the shows that you're showing your children have different representations. SOGI, for example, has great book lists, and we actually created one on our Creating Accessible Neighborhoods website, that's for zero to six year olds have queer and trans books that are written by queer and trans authors. And we include some books that have disability in there as well. Because yeah, it's really important to move forward with the new generation. And it's been interesting. I am third parent to a child who's five and was in kindergarten this year. And you can see how societal pressures are already starting around language. And it's really important that this work is being done at home. And that, that kids are learning about it from a young age.
Evan Kelly  19:00  Yeah, absolutely. I was super impressed with your website, you've received numerous awards for your work. You're even a torchbearer for the 2020 Paralympic Games. That must have been exciting. Can you tell me about that?
Heather McCain  19:12  Yeah, that was awesome. So at the time, I was on the board for BC disability games, which I had been a competitor in in bocce, and they nominated me to be a torchbearer, which was awesome. And it was quite the experience. I learned that it's very hard to smile continuously as you hold the torch. But it was, it was great because actually what I enjoyed the most out of the experience was afterwards I was in my wheelchair with some friends going to a restaurant to eat after the, my section of it was done, and I had the torch with me and the amount of people who were so excited to see a Paralympic torch. Who knew what the Paralympics were who had attended the Paralympics. And I let anybody who wanted to hold it and take pictures with and it was just great to see so many people aware of adaptive sports and and see how interested they were and how excited they were about the Paralympics. So it was a really good experience.
Evan Kelly  20:19  So I guess you're hoping for hoping we win the bid for 2030? 
Heather McCain  20:23  I have complicated feelings about the Olympics and Paralympics because of knowing how much money it costs and where that money could be used. So I, I wouldn't say I'm a complete Yes in support of it. But I think with anything, if we do get it, you know, I know that it will be an excellent experience, and that it will help increase awareness about disability and adaptive sports.
Evan Kelly  20:51  Yeah. And it's, you know, the Olympics that always is a bit of a double edged sword, isn't it? It's good for some things not so good for other things. So now here at DDA, we use a lot of adaptive tech to help our clients be engaged, help them to communicate, it helps them, let us know what their needs are, some of which we design or build ourselves. I noticed on your website, I thought this was really cool. You designed to double sling to alleviate pain on your back. Because I guess, because of the weight of your arms, that seems really, really cool. Now, are these things that you designed specifically just for yourself? Or do you market these things? Or what do you do with those kinds of ideas?
Heather McCain  21:29  Yeah, so I have arthritis in my collarbones and can lose the use of my arms, if, like with repetitive motion, or if they're down too long. And so that double sling was created to help with that. And I actually did it through the Tetra Society of North America. And I know that they have a database of all the projects that they've done, and essentially, they're their projects, that if you can't find it, you know, in the in the current market, then they'll work with engineers and people to, to create it for you. So they made me a meditation bench that I could put on my wheelchair. They've made me trays for both my power chair and my manual chair, the manual chair had to be able to go in luggage for flights and the power chair had to be able to fold up and be okay with me kind of using my wheelchair as an ATV and being in really rough terrain. And they do these projects on a volunteer basis. And they just happen to have someone who knew how to sew. And so I was really excited. And I'm actually currently in the process of getting, I found some people who are disabled who know how to sew, and they're making me new versions to update it with some new ideas. So that's not something that our organization does, but we very much support the Tetra Society and the work that they're doing and point people to their websites, which have amazing projects listed on it.
Evan Kelly  23:03  That's really great. Now, when you when you look at sort of your life and what your own needs are, even just from your own point of view, do you find like, when you find that you need something, it's relatively easy to find it? Or have it made? Or is this Is that something that you know, becomes another obstacle you have to get over?
Heather McCain  23:23  It's definitely been an obstacle, I've had to be very creative, as I think a lot of disabled people have to be, we're very adaptive. And while we might find something that can be bought, it still needs to be personalized. You know, one of the downsides of having a disability is the fact that things that are available on market are usually so expensive. And so often we don't have the funding for that and have to create a cheaper version on our own. And so there's been a lot over the years that I've had to adapt whether I get the ideas from things that already exist or try to create them myself. But yeah, I'd say it's, it's not always that easy to get exactly what we need.
Evan Kelly  24:07  Now, do you think you know, you mentioned money there. Do you think that the government is not doing enough to provide those kinds of funds?
Heather McCain  24:16  Yeah, absolutely. And I think they're... kind of the narrow criteria of who is allowed to get mobility devices is problematic. For example, I currently am using a walker because it's during the pandemic and I don't have to go very far. But I have a power chair that's now 15 years old and will need to be replaced but because I am walking outside of my home for short periods with a walker, I no longer qualify to get the power wheelchair. And so I think the government is missing a lot of people who need mobility devices with their narrow criteria. I also think that they need more money to make the process faster. We've heard from quite a few people who, you know, it takes nine months to a year to get their mobilities device. And in the meantime, they're sitting at home and unable to go out. So I definitely think that the government could be putting more money into assistive devices, and particularly custom assistive understanding, that is not a one size fits all kind of solution.
Evan Kelly  25:28  Yeah, of course. Now, is that the kind of lobbying you are doing these days with CAN?
Heather McCain  25:34  That definitely is some of the projects that we do. And we look for kind of what comes to us. And currently, our focus right now has been on looking at the, the medical system and trying to get lived expertise from disabled people within the medical curriculum. So that we have advocates who are working on our side within the medical field as well. We hear from a lot of our members who have to fight and fight and fight in order to get their doctor to fill out whether it's, you know, disability benefits, or adaptive equipment, the paperwork that the government requires, and some of our members, their doctors just won't do it. And so we feel it's really important that those medical students learn it from a early stage, so that by the time they are doctors, they can be active and effective advocates for their patients.
Evan Kelly  26:32  So just one last question for you here, Heather. What are your future plans for Creating Accessible Neighbourhoods?
Heather McCain  26:38  Ooh, that's a good one, we have so many plans. One of the main things that we're looking at right now is trying to get our workshops online so that they're available for people who aren't able to make it at specific times. Or we have some people who need more time to process. So if it's a two hour workshop, they need to take it in chunks, or they want to watch it multiple times. So we want to make it as accessible as possible. So that's something that we're currently looking at. We're also looking at partnering with more organizations to move the conversation forward on creating more accessible pride events. And understanding that it's really important that we don't just think about people with disabilities, as spectators, but as active participants, because often, organizations, for example, an art gallery will think of the people who come to view the art, who have disabilities, but not the artists who have disabilities, private organizations will think of spectators, but not people in the actual parade who have disabilities. And so we really want to have more organizations understand that 360 degree view and continue to work with these organizations on educating them and helping them create accessibility protocols. And moving these conversations forward so that future generations don't have to do this work.
Evan Kelly  28:10  Well said. Well, thank you very much for joining us today. You have been listening to DDA's Encouraging Abilities podcast Our guest today is Heather McCain a powerhouse in creating awareness and accessibility. Yes, a powerhouse and support for the disability and queer community here in BC. If you'd like to find out more about them and what they do, you can go to www.canbc.org. Heather, thank you so much for joining us today.
Heather McCain  28:36  Thank you for having me. I appreciate it.
 

Protecting the Most Vulnerable from the Heat of Climate Change

DDA talks with Jeanne Hansen who's sister, Tracey McKinley, who suffered mental health issues, died in the heat dome of 2021. Despite new government policy, what can we do to better protect people who can't protect themselves?
 
TRANSCRIPT:
Evan Kelly  0:05  So welcome back to DDA's Encouraging Abilities podcast. This is where we connect with advocates in the disability community, help tell their stories, raising disability awareness and be a supporter and advocate for them as well. For those who don't know about DDA, we are a community living agency that serves Vancouver and Richmond. We support roughly 2000 clients with developmental disabilities and their families and have been doing so since about 1952. In fact, this is our 70th anniversary year. So as we head into summer 2022, we've just passed the first sort of hot weekend, I guess, you remember last year when over 600 people in BC died as a result of the heat dome that settled over the province in early July. The unprecedented weather system showed a lot of vulnerabilities and how the province operates and transmits crucial information to better protect those who can't easily protect themselves. So that of course includes people we look after at DDA. Many people with developmental disabilities such as Down syndrome, can leave people unable to regulate their own body heat. So protecting them becomes very important. And sometimes when people with disabilities or even mental health conditions, can't properly communicate, if something is wrong, so that becomes very problematic. So today we are joined by Jeanne Hansen. Last year, she lost her sister, Tracey McKinlay, who suffered from schizophrenia to the extreme heat and is now advocating for change, for better education and compassion for the most vulnerable people in society when it comes to weather. So welcome to our podcast, Jeanne. It's very nice to have you here. Right from the start, condolences for the loss of your sister Tracey, who you said, just know that today's the anniversary. 
Jeanne Hansen  1:50  The one year anniversary, thank you for your condolences. 
Evan Kelly  1:53  That's, you know, that's very very difficult to take, of course, and we really appreciate you being here. So tell us a little bit about what your sister was like.
Jeanne Hansen  2:03  Gosh, what wasn't she like, she was a pretty awesome sister. She did have schizophrenia, which caused her to have lots of different issues over the years. But she always did it with kindness and humor, very, very witty humor, and love for everybody and anyone. So she was a very kind soul who everybody in New Westminster where she lived knew her. It didn't matter what we were doing, where we were going, if we were shopping, or out for lunch, or just walking around and going to Timmies for a double double. Everybody knew Tracy, everybody had nice things to say to her and about her.
Evan Kelly  2:48  Her illness, schizophrenia, did that limit what she could do in terms of employment? How does she function in her own life?
Jeanne Hansen  2:55  Yes, she did live on her own. She did have support, of course from family and as well as the SIL program, the semi-independent living program and mental health in New Westminster. But the stresses of everyday life that we just face normally she couldn't handle so she didn't have a nine to five job or any job really, and but she did function well in her life that she did live on her own.
Evan Kelly  3:23  Now, you said early in another news piece that the medication she took to battle, her mental illness damaged her kidneys, which the heat exacerbated, which ultimately led to her death. How do we as a society inform ourselves that this could even be a risk, like that might for people that might not even enter their consciousness, as something you need to consider?
Jeanne Hansen  3:44  Well, we certainly didn't have a clue that it would have the effect as quickly and as damaging as it did. We knew she had issues with her kidneys, we would always go with doctor appointments and stuff like that. So we were very well involved with her overall health as well as her mental health. Her kidney function was anywhere between 15 and 20% and had been for quite a few years. So they were doing things to kind of get her ready to the possibility of ever having to have dialysis but she wasn't close to that yet. Knowing what we know now, not really realizing that all these different things can make things worse for people more susceptible for people with the heat, not just kidney but liver damage, high blood pressure, certain medications that you're on can make you more susceptible. Antihistamines, for example, we were talking about allergies coming in and that can make you not feel the heat. Make things worse for you, antidepressants, antipsychotics, certain antibiotics, there's lots of different medications that you should be aware can lead to you having difficulty with realizing what the heat is doing to you. You don't have to have a lot of damage to your body in order for these things to make a difference, and I'm certainly not saying don't take those medications, they serve their purposes. But certainly speak to your doctors and that sort of thing about seeing how the heat can affect you.
Evan Kelly  5:16  Yeah. And she, didn't know she, you mentioned that she lived with an assisted living.
Jeanne Hansen  5:20  Not assisted living, no, she lived on her own. But she did have a group that helped her with living on her own that was semi independent living. So she would be, you know, taken out and shown how to shop for herself and different things like that. 
Evan Kelly  5:38  Right, so there was someone sort of checking on her, in a way. And so there was nothing, there's no red flag or anything like that, at that point in your mind to say that, that wasn't enough to protect people like this, from the heat or things seemed normal? And was this, I guess, was that a kind of a surprise here?
Jeanne Hansen  5:58  Very much so. And it was to everybody involved with Tracey as well, there, there is no one entity, one group, one person, the government, paramedics corner, anybody to blame, in all this, it's either all or none. We need to take responsibility for ourselves. And if we can't, then there's, the people that do caretake for us, our loved ones or family members, the people if we are in any sort of program, where we are being watched, even people who do live in homes that are... have caretakers in that there. We didn't know, we didn't realize how bad it was, we didn't realize that it would be you know, it just never crossed our minds. My other sister Jane and I, we would call Tracy and check in on her and she'd always "Oh, I'm fine. I'm fine, I'm fine." And even the people that lived in the building where she lived, it's a nonprofit run building. And they were doing their damnedest to go around and knock on doors, morning, afternoon, evening, checking on everybody to see how they're doing. And they didn't know and they're not to blame either. But they have the guilt associated with it, too. Nobody truly knows exactly what's going on inside the body. And if someone doesn't have the ability to say, "Hey, I'm feeling this way," or whatever, you know, sometimes these symptoms of heat exhaustion, and heatstroke can be just ignored or mistaken for some issue that they might have physically already. Or they just don't know what to communicate how they're feeling.
Evan Kelly  7:32  Yeah, that's that's obviously the biggest sort of the biggest piece there. So it's clear you don't believe assigning blame is productive, of course. But where do you think we need to be directing our energy instead?
Jeanne Hansen  7:44  Well, I sat back for the last year and just kind of thought of different things, but was waiting to see what would come up out of this report from the coroner's office, what the government might want to do, no point reinventing the wheel, if there's things that are going to be put into place. But there's a lot of gaps in what's come out that need to be filled. A lot of it is just awareness, and trying to figure out different ways to fill those gaps. And sometimes, there's not enough funding, there's not enough time, there's not enough people, there's not enough for the government to do. So it's kind of up to us to take some personal responsibility to try and fill those gaps. And that's what I'm trying to do.
Evan Kelly  8:31  And you're creating sort of I guess we've got a Facebook page up and what else are you doing to try and raise awareness to get people motivated to sort of, you know, maybe look out for each other a little better? 
Jeanne Hansen  8:41  Well, a lot of things like this, media, we've done some reports, some print, some news reports, the Facebook page, email, anybody can reach out and say, hey, what can I do? Can I donate a fan? Can I, I work for an air conditioning company, and I want to see about what we can do to help, or just... it doesn't have to be money. It doesn't have to be anything like that. If you don't have those, maybe you live in a building that is a little bit older that doesn't have central AC or anything like that. And maybe you can volunteer to coordinate door knockers in your building to just go and check on people. It can be something as simple as just putting a signup sheet down in your lobby that anybody can sign up for and say they are they want to be a volunteer to help knock on doors or they want to be put on a list to make sure that someone comes check in on them.
Evan Kelly  9:40  Now you do have a Facebook page do you have the handle for them?
Jeanne Hansen  9:44  It's Tracey's legacy, "T-r-a-c-e-y-s-l-e-g-a-c-y," it is a Facebook group and there is a Facebook page and they'll direct to each other.
Now what is, what can people find on this Facebook page?
Oh just information they can reach out through the Facebook page if they need some assistance if they need some direction as to where to go, what to do, awareness things we do posts about simple things that people can do for themselves and for their loved ones to help stave off the heat to keep their core temperatures down, doesn't have to be 40 degrees outside just as much as 30, 32. And you can start having some issues with heat exhaustion, which then can lead to heat stroke and possibly death. It doesn't have to be air conditioning units in every building. Sometimes that's not possible. I know a lot of people will say things about oh, we need, the government needs to give everybody an air conditioning unit. Oh, you know, it's there's older buildings that can't support it electrically. There's issues with people not understanding how to run it, there's people that are afraid that they run it that now their heating bills, or their electricity bill is going to go up too high, and they can't afford to pay it. There's certain issues with people who do have those, but aren't allowed to use them by their, either their strata or the building manager because it ruins the aesthetics of the building outside. So they don't want to have those. So there's certain rules and things that could be advocated for to make some changes, to make sure people are able to cool down their buildings, just because the temperature cools down outside at night, some of these buildings will keep retaining it like a convection oven.
Evan Kelly  11:35  So there, certainly there's lots of bylaws or whatever rules or strata rules, things can be put in place. But to me, it just seems like you know, we all have, we all have relatives, we all have older people in our lives, we all have people with disabilities in our lives, I mean, 25% of the country, say they have a disability, we've got people with mental illness issues. Seems to me we really, as a society have to be just more aware of these people in our lives. And be more compassionate.
Jeanne Hansen  12:05  Yeah. And the awareness is the biggest thing right now. Everybody's aware of what happened last year, and it's to keep the awareness going that you know, this issue with temperatures getting hotter, and that sort of thing is not going away. And just making sure that, you know, the first thing we should be doing is making a plan. Making a plan for ourselves, making a plan for our loved ones, making a plan for clients and that sort of thing to know, okay, this is the steps we need to take. This is how we need to build the information to get to people that's easy to follow. Things that are easy to do and inexpensive to do to help them keep cooler, and have that plan ready. So that when things do start heating up, they can start enacting some of those plans.
Evan Kelly  12:58  You know, the government has put in a new BC heat alert and response system. Any thoughts on that? Like, I'll just give it the the old list here that number one is they want to coordinate a provincial heat alert response system. I'm not sure what that is necessarily going to entail. 
Jeanne Hansen  13:16  I know they want to put out some sort of warning system that kind of beeps on our cell phones and stuff like that, if there is an extreme heat advisory, that's great for someone like me, that might not be paying attention to the heat and might not be feeling the effects of it that I can go, okay, hey, we've got this plan, and we need to start enacting it. But there's a lot of people like Tracey didn't have a cell phone, didn't go on the computer. She didn't have any, didn't really watch the news. So she wouldn't have really benefited from that. And there's a lot of other people that wouldn't either.
Evan Kelly  13:45  Absolutely lots of the a lot of our seniors don't have the latest tech stuff. So that becomes a communication gap. How do we get that information to them and ensure that they're not, that they're actually using that information and protecting themselves and are we're helping prepare.
Jeanne Hansen  14:00  The kind of a care watch, I just kind of dubbed it instead of a block watch, a care watch where if you set something up in your building, that you can then go around and slip things under the door or put them in the mailboxes or something to let people know, hey, this is what's coming, and the warnings out and if you need any assistance or whatever, then let us know.
Evan Kelly  14:22  Now like I was just going through that list. So the number one was a coordinated provincial heat alert response system. Number two, ensuring vulnerable populations are identified and supported during extreme events again, like that sort of care watch you're talking about. And that is, the care watch is not a government program. That's just something...
Jeanne Hansen  14:41  I came up with right off the top of the head, yeah.
Evan Kelly  14:43  And number three is implement extreme heat prevention of long term risk mitigation strategies. That might, who knows what that might involve might be bigger, bigger picture.
Jeanne Hansen  14:56  I think that's what they were meaning when they were talking about how they want to change the bylaws. So that all buildings built after a certain date have to have central AC and stuff like that. And that's going to be great for anything in the future. But it's certainly not going to change anything for the buildings as they are now.
Evan Kelly  15:11  Yeah. And that's, that's obviously the, the key. And again, how best, how can we better address that communication gap between us and those who are more, more vulnerable.
Jeanne Hansen  15:24  Again, being more aware like that, that warning will go out to the general population. And if you already are aware that there is an effective heat on your loved one, and you have that plan, now already planned for and built in as to what you want to do, then that alert that you receive means you enact it. So you're going physically to check on the person, we were just phoning Tracey to check in on her. We didn't know how hot it was in her apartment. It wasn't till we went a few days later to clean it out that we realize, holy smokes, it's like 45 in her apartment, it was very hot. And we had to keep taking breaks. And and we're very aware, it was, it was more like a convection oven. That's what I keep referring to it. The building in itself, the ventilation, just the windows weren't large enough, it was large windows, there's no reflection tape or anything like that on the outside of the building itself to kind of reflect some of that heat away. So there's lots of different things.
Evan Kelly  16:31  You don't, in your mind find the building owners or anybody partially responsible, or is that something that needs to be addressed?
Jeanne Hansen  16:38  No, I don't, like again, there's nobody to blame. It's, it's what's happened. Now we know about it. Now we know different things that could be done about it. And a lot of times, it's not until an event like this happens, where we really want to kick it into gear, and to say, okay, you know, unfortunately, these poor 619 confirmed so far souls have passed away because of this heat. Now we're aware of it, now we need to take the steps to do something about it. A lot of these buildings where these folks live are nonprofit buildings, you know, they don't necessarily get the government funding, there are different funds that are out there that people could apply for, different grants and that, they're just not aware of it. So now they're starting to learn that they're aware of it and can make applications to get that funding to put the film on the windows, to put cooling centers in the buildings themselves where these people live, the cooling centres are awesome, that's part of the plan for the province to have more cooling centers available. But there's not necessarily, excuse me, a lot of people who will leave their apartment building to go. There's social anxiety, they aren't aware of it, they don't know how to get there, they don't want to go out in the heat to go get it, to go to the cooling centre. They don't know that there are places they could call to get rides there. But even that can have an issue because there was some issues reported to me about companies in that they would be supporting people to give them rides to the cooling centers, but couldn't necessarily pick them up or weren't, the whoever answered the phone wasn't aware of it, that sort of thing. So there's a few different tweaks and things that need to be worked out. And that's going to take reporting from a lot of people who are actually trying to use those services and have issues.
Evan Kelly  18:31  The cooling centers are nice, but you can't stay there for 24 hours a day.
Jeanne Hansen  18:39  I'd like to see more buildings have the cooling centers built in either in their lobby, have a little area that set up to have some portable air conditioning units that can be put down there so people can go down and get some respite from the heat. And then that's a good opportunity to then also have some things that people can read about to learn about what to do personally for themselves if they're able to have a cold shower or have a cold bath. Put on a long sleeved cotton t shirt that's been soaked in some cold water. Where that to cool down have some spray bottles with some water I just learned something interesting yesterday and it was peppermint tea. Somebody told me if you make peppermint tea, and I've been looking into it, put it in the fridge cool it you can drink it as well as spray it on yourself in a spray bottle or put it in the t-shirt and wear that the peppermint will help cool you down which then can help cool down your core temp. So lots of different things that can be done easily and inexpensively for people and that are easy to follow. But the cooling centers being where they're at having misters setup outside so they can go and cool down there too, fans, industrial fans in the hallways to encourage more airflow throughout the building. Making sure that the building has their inspections and that done to their ventilation systems to make sure that they are operating, as they should even have sections created down in underground parking. And that if they have it so people can go downstairs and sit and relax. And even if they had to, could have a cot or so down there that they can sleep in. 
Evan Kelly  20:23  One of the main issues though, was like your sister said she was fine. And that's where I, as a as a group, as a society, sometimes we have to learn that we can't take some things on face value.
Jeanne Hansen  20:38  Absolutely. Yeah. When I am asked the question, who I'm mad at who's to blame? You know, it always comes back to me. I didn't personally go and check my sister's apartment, I didn't realize how hot it became in her little bachelor apartment. And I didn't realize that when she was saying she was okay, she wasn't. And that is the biggest regret. I have an app that I didn't personally go. So the people I talk to, don't just phone them, go, physically go and see what things are like for them. And if part of that means that you then take them out of that and bring them home, where they can be watched and be cooled down and be monitored, then please do that.
Evan Kelly  21:26  Yeah, absolutely. Some interesting things about actually heatstroke and heat, the heat exhaustion, we have this little list here. That's supplied by one of the CDCs. The heat stroke, I thought was interesting. If you're suffering from heatstroke, you've got a high body temperature around 38 degrees or over. Hot red skin, fast, strong pulse, headache, dizziness, nausea, confusion, you could pass out at this point when you've got just heatstroke. And that's different from heat exhaustion. But one of the things that's, that I thought I found was counterintuitive was don't give the person anything to drink. You know, it's one of those things where people, if you just assumed, oh, give him a cold glass of water or something like that. Well, in this case, they're saying, don't do that, call 911 right away.
Jeanne Hansen  22:15  Well with the dehydration, because there's the first dehydration, then there's heat exhaustion, then there's heatstroke, and then there's death. So with the dehydration, if you're already feeling thirsty, you're already dehydrated, pure and simple. When you get to heat exhaustion, it's the body temperature goes up, you use get red, you can feel nauseous, you can have all these dizziness symptoms, you can have a lot of symptoms that sometimes mimic what they feel like all the time already anyway, depending on what their health issues are. Or they're just not realizing it. Once you move into the heat stroke, well then that's when you need more medical intervention and emergency situation and go to the hospital and call 911, that sort of thing. It can, it can cause you dehydrate more if you were to give somebody who's already at that stage a lot of fluids, because they can actually then turns into diarrhea and vomiting and they can dehydrate even more faster.
Evan Kelly  23:19  And within heatstroke confusion. I mean that's perhaps where some of the miscommunication comes in. And the heat exhaustion for another example here, it's the you know, their skin is going to be cold, pale and clammy. So you don't necessarily feel like this person is physically hot.
Jeanne Hansen  23:38  No, if it's hot outside, and they're having some of these symptoms and feel cold and clammy and they kind of stopped sweating. That's when you know you've reached that point that you need medical intervention. Caretakers have to watch out for that stuff themselves, too.
Evan Kelly  23:54  Oh, absolutely. I mean, DDA is an organization that, I mean, we look after, we have numerous group homes where we got two people, 24/7. And we were lucky last year that we you know, when the heat dome hit, we managed to get all the air conditioners that we needed to keep our houses cool, because we have people that cannot, like I said earlier on, cannot regulate their body temperature. So we were quite fortunate that we sort of kept kept everybody safe. But I mean at the moment, with all the changes coming in, do you think the government is going to be doing enough? Do you feel better about where we're going in this direction?
Jeanne Hansen  24:34  The government run buildings are going to have the funding just given to them. I know I was at a bit of an event out in New West and there was quite a few different groups that were there. There was reps from BC preparedness. There was BC housing there, there was the senior society, there was the New West city, there was the MLA office that was there, and we had quite a lot of it interesting conversations. But I know BC housing, they're going to start doing a couple buildings with the film on the outside as kind of like a trial to see if that helps. And then eventually that will hopefully spread out to all the buildings run by BC housing. So there's things like that that have been put into effect for the buildings that are government funded. The problem is running into the the nonprofit run buildings, buildings run by the legions and, and that sort of thing where they don't necessarily have that funding to be able to do that. So hopefully, the government will pull in more money into these grants and make them more readily available. Government isn't always too quick to say, hey, here's some money apply for it. You have to do some searching for it. But they are out there. 
Evan Kelly  25:55  Certainly, there's lots of grants for accessibility. We've seen that come down a lot. I mean, I'm not sure that you know, protecting from the heat falls under accessibility to a point it does. But would you be able to talk about where people can find these grants to help protect themselves? 
Jeanne Hansen  26:16  Google. Google is our friend and sometimes our worst enemy. But yeah, no, Google it. There, they are out there, I do have some links that are on our Facebook page and our Facebook group. So they can also go on there for information, don't have to join up or sign up there or anything like that. Just go peruse it for the information. And there are some grants that they are accepting right now. So they can certainly make their applications and deal with their boards and figure out what they want to do. But there is some funding out there. And then hopefully, just over the next little bit, building up more and more of a network base, to you know, I have people reach out and contact to say, hey, you know, I work for an H-vac company, and we want to see what we can do. Or I work for the company that puts film on Windows, let's see what we can do. Or, you know, I want to make a donation to a building or maybe your church wants to adopt a building of full of seniors that can give them some stuff to set up for cooling centers, to maintain fans and donate fans to organize and help them figure out how to set up the the cooling centers, the misting stations, the contacting everybody in the building and get it going. Like there's lots of grassroot groups that are kind of doing things individually. I like to see everybody who's trying to do the same thing on the same road. So let's communicate to each other and more voices certainly get more attention.
Evan Kelly  27:53  Yeah. So it's, it's unfortunate that I mean, we know that climate change is here. We know there are things happening. There are more extreme weather patterns. And there's been no indication yet that we're headed towards another heat dome. Hopefully not but, and they said it was like a one on 1000 year event. But it still happened. And unfortunately, things like this. It's like bad things have to happen. In order for us to have a wake up call as a society. It just seems like we that's the way humanity operates.
Jeanne Hansen  28:20  Every year people pass away from heat, of course. But it's certainly not the the great number that happened in the short amount of time that it did last year. So that's been kind of the "aha" thing. It's always happened. But it's kind of those things that we become used to and it sort of, we don't really remember it or pay attention to it or anything like that, till it personally happens in your life. And then all of a sudden, you're like, hey, wait a minute. What can I do? Where can I go?
Evan Kelly  28:50  While we were certainly appreciate the advocacy work you're doing now, in the name of your sister. It's definitely definitely worth it. For information, again, is it only on the Facebook page where you go, largely where you're putting stuff?
Jeanne Hansen  29:05  I think eventually we're going to have a website. I just haven't had time to do that. It's all been very sudden that I've kind of been put into this position or forced my way into it. I don't know how else to say it. But it's right now, it's Facebook and email. So we do have an email setup as well. Traceyslegacy@gmail.com.
Evan Kelly  29:29  So Traceyslegacy@gmail.com, you can reach out to Jeanne and it's Tracey's legacy on Facebook. I'm not sure how that's going to Facebook, probably Facebook slash Tracey's legacy kind of URL. 
Jeanne Hansen  29:41  And I think there's a couple others out there. I think one's like a hen party from England and all this stuff, so make sure you're on the right one. Yeah, it'll be Tracy's smiley blue face, or blue eyed faced in her blue t-shirt, that's what you're looking for.
Evan Kelly  29:56  Well, thank you very much for joining us today, Jeanne. We have been talking to Jeanne Hansen about the concerns of heat in BC ever since the heat dome hit the province last year and 619 passed away as a result, her sister Tracey was one of those people unfortunately, we've been talking about the the ways we need to communicate to people to ensure that they're safe to move things forward. So hopefully we can stop this from happening again. Thank you for joining us.