Encouraging Abilities Podcast

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.
 
TRANSCRIPT
 
Transforming the World One Building at a Time with Karin Pasqua
 
00:05Thanks again. It's time for DDA's encouraging abilities podcast. I'm your host, Evan Kelly, the communications manager here at Developmental Disabilities Association. Today we're talking about universal design and accessibility.
00:18find this topic quite interesting as a person who does not identify with having a disability, I find that after working at DDA for a few years that the way I look at things, at least from a physical point of view, is shifting. Noticing things that need changing or wondering how someone with limited mobility can navigate something to how a door handle is designed that can be very limiting. It's been eye opening for me to say the least. Joining me today is Karen Pasqua, Universal to Design and Accessibility Consultant with Meaningful
00:48access consultants based here in the Lower Mainland. Now Karen is an RHFAC professional and accessibility and universal design consultant with a passion for beautiful functional design. She's got a deep understanding that spaces and events in our communities should be enjoyed by everyone of all abilities. And she has expertise in working with municipalities and community spaces. She likes to say that she's part engineer, part occupational therapist. She has a natural affinity for adapting
01:18environment and turning what some see as complex access problems into thoughtful barrier-free solutions. So thanks for joining us today, Karen. Thank you. Thank you for welcoming me onto your show today. My pleasure. So what got you into this line of work? It seems really quite interesting. That's that's quite the question. My background is very diverse. I will say that as from the
01:48that I wanted to help people with disabilities. And back then, as a child, you perceived the world in a more limited way, perhaps. And in my mind, I thought I wanted to be a pediatrician. But organic chemistry is not my friend. So that led me down a little bit of a different path. And I'm so glad that that's the case. So my background is a smattering of working in
02:16In university, I used to work at a camp for adults and children with disabilities. And it just became such an incredible love. And I love to like figure out the environment and how could we make the camp even more inclusive for everybody. And I went on to take courses in communication disabilities. And I worked as a speech and language assistant at a Center for Child Development for quite some time.
02:45organizations to raise money for people with disabilities. I've worked at all sorts of different organizations and then eventually I ended up at the city of Surrey as the accessibility and universal design specialist. And from that, that just really reinforced where my passion lied and I took more and more courses and eventually decided to go out on my own because my passion is really to make
03:13more and more of the world more inclusive for all of us. So I guess that's the cold note of how I got here. I think we need a lot more people like you. So I guess in terms of the city of Surrey, just to you know.
03:26talking about that, it's one of the fastest growing cities in Canada. That must have been a lot of opportunity in terms of being involved in the growth and the change in accessibility in that town. Oh absolutely and I'm so proud of the work that we did and I still get to work with the city now sort of in a different capacity and just to be able to bring in facilities that
03:51meet the needs of our community and just ensure that nobody's left behind. Because let's be honest, right, we all want to be involved. We all want to go to a rec center and to be able to work with architects and developers to ensure that the new spaces would be welcoming and retrofitting old facilities to to increase accessibility. And, you know, it's always a bit of a moving target. But, you know, when we find a grant and we can put in an automatic door opener, fantastic.
04:21you know, that's a step, you know, check that one off the list. But it's been incredible. Give me some great insights into not just recreation, but our bylaws and making sure that, you know, let's say there's enough parking available for people to even get in the door or our cultural sites, you know. It's not just about being able to go to a community center, but we all want to go to museums and participate in theater and shows.
04:49the whole gambit. So it was the most incredible experience. And just also, you know, I have to say the best part of that experience was actually shifting people's mindsets.
05:02that is probably my favorite thing. That's part of my job. Yeah, that would, I mean, when I sort of look at this, to me there's kind of two sides. We were talking about accessibility and often that means, like you said, going back and retrofitting something and changing something that was already built for typically developed people or people who don't have spinal injuries or something. And now what it seems, what I'm seeing at least from my vantage point here at
05:32to change that perspective. We need to look at things, not really, not necessarily, oh how can we make this better or how can we change this, but looking at it from a universal perspective from the very beginning. Yes. And I think that's where the mindset is what you mean. Absolutely, the mindset and also just this idea that
05:57Often we find there's this barrier where people say, oh, but people with disabilities don't come into our program or into our space. And my thought is always, first of all, that's incorrect. And if that is correct, then there's a reason why. Maybe they don't feel welcome. Maybe they aren't able to come in. Maybe they don't know that they're welcome. Maybe they don't know that you have facilities that meet their needs.
06:26You know, I ran into that very, very recently with a friend of mine who uses a wheelchair, and we were at a club in Vancouver. It's sort of an older club, I guess, but he had no problem coming in the front door, and he was doing some photography there and stuff, and we just sort of looked to the back, and the only way out in the back involved stairs.
06:49Yeah. You know, and it's like, and he just looks at me, he's like, how simple would it be to put a ramp in here? You know, and just, but just the fact that there's, you know, probably that and so many other businesses, even just in the lower mainland that haven't taken these things into consideration. Yeah. Or, or they think of a ramp, but they don't think of a place to sit. You know, like you can get in the building, but great. Can you have a beer?
07:16Can you pull up to a table with your friend? Exactly. Can you use the washroom? Yeah. And I have to say for the staff, they were actually quite nice and they offered them and set up a lower table so he could put his drink down and his camera gear and stuff like that. I mean, people are, you know, taking this stuff into consideration, but it's just, it's these older, maybe it's these older buildings and, you know, it wouldn't take a lot of money to put a ramp in, let's be honest.
07:41Now, as a consultant, where does your involvement in accessible design begin and where does it end? Oh, that's a great question. It honestly depends on the project and the organization. So for many of our clients, they might hire us, we'll do a walkthrough of their existing site, we create a report that outlines everything they've done well.
08:09and then gives them some tips as to how to improve accessibility. And that's not just for somebody using a mobility device, but also someone who is hearing, a part of the hard of hearing or deaf or has low vision, is blind. We also take into account cognitive disabilities and neurodiversity. So we often like to work with our partners, give them some information, and then help them perhaps find grants or...
08:37come up with creative solutions within their budget to make their spaces more accessible. That's kind of the majority of what we do. My favorite though is when a developer or a city, architect firm asks us to join them in the process from the moment of the design starting. And that is the best thing in the entire world because right from before even a shovel hits the ground,
09:05we can make sure that that future facility is welcoming to everybody in the community, whether it's somebody with a disability, whether it's an elder, a senior. Often our seniors don't identify as having a disability, but they have the same needs. You know, we just kind of like to start right from before construction even starts to kind of help that new building be most inclusive.
09:30The other thing we really enjoy doing is for places that are already pretty accessible, we like to help them with their human resource strategies. So making sure that someone with a disability can be hired and work there and have some really wonderful, gainful employment and work the job of their dreams, you know? So we kind of meet people where they're at and help them move along the journey, if that makes sense. Absolutely.
09:59Now, can you give me an example of a recent project where you got in before shovels hit the ground? Absolutely, yeah, for sure. One of the projects we're currently working on is the official community plan. There's a redevelopment happening in Port Moody. There's a huge piece of land that is...
10:26being rezoned and going to be some new towers, some townhouses, a mix of residential and commercial. And the developers on that project have brought us in. The city has actually requested that they have an accessibility consultant on their team. So we're actually helping them navigate a very complex piece of land. So even though it won't be completed for probably another 10 years.
10:55At least the designs now are already planning ahead. You know, like the boardwalks are going to be accessible. There's elevators that perhaps wouldn't have originally been implemented. We're integrating the community with the SkyTrain to make sure that that walk or wheel isn't too arduous to get onto the SkyTrain and get into Vancouver.
11:23So that's a project we're really excited about. And there's been some facilities in Surrey, some of our new rec centers as well, that we've had those conversations with before those shovels hit the ground. And I'm so, so proud because those facilities, you walk in, you don't even realize they're accessible. They're so well designed that you just feel welcome. And you just feel included. And isn't that the point?
11:51That really is the point. Now, do you find it, you know, obviously there might be a cost added to making things more accessible. Do you find though, like if you get in at the ground up, that that cost is easily included on something that where you wouldn't really be a part of? Or do you get some pushback from businesses or clients that say, no, we can't do that because there's an added cost to it and we've got to stay on budget or anything like that?
12:19Yeah, budget's always one of those tricky conversations. But I can tell you, so there was a research paper done by the architect group at HCMA, and they determined that to build to a Rick Hansen Foundation gold-certified standard, the additional cost at construction is about 1%, which really is nothing.
12:44to actually build a facility that includes everybody. When we're retrofitting, that's when the costs increase considerably. But the thing we tell most people is the cost, you think it's going to be far more expensive than it actually is. To have an employee with a disability, the accommodations are on average $500.
13:07That's really not much, especially when we're making lots of money, right? And then the wonderful thing is that the conversation now is more about the business case. People with disabilities have money that they want to spend, right? We want to go out and enjoy ourselves too. So when you make a building more inclusive, then you're actually allowing people to come in and spend money with you.
13:32Yeah, absolutely. You're actually kind of net positive. Yeah, absolutely. That's a really good point. And it seems to me like even just from a brand management perspective, creating something or making something better just helps your business. It does. That's a really great point. And I don't know about you, but I like to shop in places that reflect my value.
13:54you know, and or where I see people like myself or like my friends being represented in their staff. So when I know that a company or an organization wants to include people with disabilities, chances are they're going to get more of my money. Well, exactly. So that said, what what do you see as any major obstacles to that universal design philosophy?
14:21I think the biggest obstacle still is those attitudinal barriers that we're still facing, the perception. The idea that accessibility is ugly or medical or somehow diminishes or takes away from the aesthetic, whereas I would argue that it can be done so beautifully and so thoughtfully that making an inclusive and universally designed space or product.
14:50It actually could be more beautiful, more functional, more create more space for some creative thinking. You know, let's not do things the way we've always done. Do it differently, maybe a little bit better. Who knows? A lot of it better. So a lot of a lot needs to be better. Tell me a little bit about the Rick Hansen Foundation, the training that you received there. And how does one get a gold designation?
15:20Okay, two great questions there. So the training is available. They have some partnerships through a few different colleges. And there are some prerequisites to take the training, but if you've got a bit of a background in design, architecture, construction, they'll welcome you into the program. And I do, and I think they have a new program that's sort of like an intro.
15:46an overview that is welcome to everyone to take and I highly recommend that anybody who's interested take that course. And in terms of getting gold, that is a bit of a process. So what, there's the minimum requirements, so some of the minimum requirements are, like all of the entrances must be accessible.
16:09You know, so all main entrances need to be welcoming to everybody. Visual fire alarms are needed throughout the facility. All of the areas that someone would need to use, washrooms, kitchens, office spaces, whatnot, those all need to be accessible. So you can't have a building where, you know, 70% of the features are available and then, you know, 30% are on a...
16:37on a floor that's not accessible by an elevator, for instance. And then there's a whole bunch of criteria. So we do a walkthrough, we have a whole long list, and then that goes through an adjudication process. And basically, if you're able to meet those minimum criteria and hit about 80% of the rest of our scorecard, that is the criteria for gold. And that is taking into account people of all sorts of...
17:06abilities and disabilities, vision, hearing, mobility, cognitive. And it also just includes elements like signage and wayfinding so that when you walk into a space, you can find where you're going really easily and you don't have that sense of anxiety and being overwhelmed. Yes, we all need that, don't we? Oh, goodness, do I ever too. I'm directionally challenged.
17:34Right? Like, give me a sign. If I'm running late, I just need to know where I'm going. Now, so those those sort of benchmarks or designations, does that all come from the Rick Hansen Foundation? Are they the ones that set up those benchmarks? They did. I mean, they've done it in collaboration with other organizations. So they kind of took the lead. They were the experts, especially from like a mobility disability perspective. But.
18:00As you, I'm sure you know, you know, the community feels very strongly, nothing about us without us, right? We want our own personal experiences to be reflected in best practices. So they've worked really closely with other organizations like the Canadian National Institute for the Blind. They work with the Wavefront Center that supports individuals who are deaf and hard of hearing and a whole host of other
18:28organizations including the Canadian Standards Association. So it's become a very well-built machine, shall we say, that really is constantly being upgraded. We're constantly listening to what other organizations and individuals with lived experience are expressing and making those standards even higher.
18:52Now, we talked about money for a bit, but obviously some businesses will feel that funding can be an obstacle, but the governments like provincial and federal making grants available. Can you describe the process for businesses to secure funding for accessibility renovations? Yeah, that's a big one. And grants are, it's unfortunate that...
19:16there aren't that many grants available. There is the Enabling Accessibility Fund, which opens annually for people to apply and have some of those larger renovations covered, maybe installing automatic access doors, ramps, elevators, visual fire alarms, those like really big expensive pieces. Where, what I like to do is kind of encourage people to get creative.
19:43So I imagine that there is going to be more funding available as the legislation requires it. So I'm not sure if you're aware, but the provincial and the federal governments are currently working on standards. So we're looking towards much like Ontario has. So Ontario has the Ontarians with Disabilities Act that has requirements, whereas BC does not yet, but it is currently being created.
20:13With that legislation, I imagine more funding will be available. But in the meantime, get creative, right? So we can, we can look for, I often encourage people to look for things like beautification grants or cultural grants, grants that support folks in isolation or seniors. These are all sort of really creative elements of looking at funding, especially for not-for-profit organizations or small businesses.
20:42If you look at accessibility through the lens of ensuring that we're all welcome, that means that other marginalized groups or seniors or, like I said, those experiencing isolation, you can kind of utilize some of those grants to help everybody get in the door.
21:01Absolutely. Now how would you, I mean you just lighted on BC's approach to accessibility and that there's sort of, you know, there's the new provincial laws that are coming down. I know the city of Vancouver is putting in a new accessibility plan. Overall is our local approach to accessibility, how's it doing? Is it good, is it bad, are we getting better?
21:31Oh, at the same time? You covered it. We're improving, but in many places it's very good and it's better than other places. I come from Montreal. Vancouver is much more accessible than Montreal. There's a lot more historical buildings and the historic society.
21:59be accessibility legislation. So I guess, yeah, it's good, it's bad, and it's improving simultaneously. No, imagine you have... That's good. I guess, I guess, heritage buildings would be, like you just sort of mentioned, in Montreal. How much of that is an issue? Have you run into that problem? Yes, it is. It's less of an issue here. We're just kind of a newer city.
22:28on the whole. But it is, it's one of those things where you have to try to manage both sides because there is something really, really important to our heritage and ensuring that pieces of history are maintained and loved by people now and in the future. But at the same time, they need to be able to do them, access them. One of the most recent examples I can think of is we were working with
22:57the City of Surrey's museum. So the Museum of Surrey has a historic schoolhouse that was brought onto the property. And we had some good conversations as to how to make it accessible. And ensuring that we kept front of the building as it was original, we were able to kind of come to a middle ground and bring a ramp.
23:25up to the side of the building so that, you know, from looking at the building on from the exterior, you're still experiencing a historic building. But just on the side that entrance, we made sure that everybody can get in. This is definitely a bit of a pinch point, you know, you have people with two different passions kind of coming together and wanting to find a collaborative point. But it's doable. And at the end of the day, I know,
23:54My husband Marco and I, we work quite closely together and he often talks about this one conversation he had at some point where this was exactly what was happening, the intersection of history and accessibility and somebody in this particular building was saying, no, but we can't replace the doorknobs, they're historic, they've always been there, but a lever handle is more accessible and it's safer during an emergency.
24:23And the conversation we had was, okay, well, if the doorknobs are so important, like can we put them on a display case somewhere? We don't need to get rid of them, but we do need to make the space more inclusive. And part of that is actually replacing the doorknobs. But if the doorknobs are really important, like build a display case for them. Yeah. There's a middle, there's always a middle ground, right? It has to be. Totally. Sort of makes me wonder though, like.
24:47Who are the ones to put the pressure on businesses to make change? Because the sense that I get is that people with disabilities sort of get tired of raising the alarm about something. So do you find it's the people with disabilities who are putting the pressure more or are businesses sort of starting to wake up a little bit and starting it from the beginning?
25:15Hmm, that's a really good question. Um, I think it's a little bit of both. In essence, the disability community has been advocating since what seems like the dawn of time to just simply be included and to be thought of. But sometimes that advocating kind of rubs people the wrong way.
25:41and when it gets really loud and angry, it kind of works against us. But it seems as though there does seem to be this tide that's turning and this change that's happening in the world that I don't know, perhaps, adjacent or perhaps thanks to other social movements that have happened in the last several years, that there's maybe that's been helpful. I know
26:10This sounds a little bit strange, but my husband has a visible disability. He uses a wheelchair. I do not have a visible disability. I'm an ambulatory person. I do have a hidden disability, so my auditory processing is my area of challenge, but you can't tell, you can't see. What's interesting is that Marco can have a conversation with somebody, and I can have the same conversation with that person.
26:39it's heard better from him because he's the person with the lived experience. And sometimes it's heard better from me because people, um, because I don't have a physical disability that I'm kind of almost expressing it as a peer in some respects. It's kind of hard to explain, but it's quite interesting how the information can be taken differently. Just...
27:06from the perspective of someone with a visible disability versus someone who doesn't have a visible disability. So, and I think your question that I think my answer to your question is kind of coming from both areas. And then on top of that, you know, we're starting to talk a lot more about aging in place and our seniors and wanting to support our seniors. So well, we know that when.
27:35the environment is accessible for seniors, it becomes accessible for everybody. Yeah, I think, yeah, it's a little bit of all of the above and perhaps just some good timing.
27:46on top of that? I don't know. Well, that's good. That feels like then there's that shift going on. It's not just people with disabilities, you know, raising the alarms and that the society in general, at least Canadian society, is starting to listen. And that's really good. I've got one question for you left. Imagine if you had unlimited resources and approval, what's one thing you would make, one change you'd make to all public buildings?
28:15One change I would make to all public buildings, I would ensure that every single public building is welcoming to people of all abilities. But if I have to narrow it down to one specific thing, I would have to say every public building has a really inclusive washroom and ideally an adult-size changing table.
28:43And in that way, everyone has the ability to have dignity in all of their human processes. Well said. Of course, these are things that people just usually don't think about, you know, and that's the whole idea behind this, I think, is that universal lens that you've got to think about everything. Yeah. It sounds arduous, but it isn't.
29:07Once you get into that mindset and that sort of lifestyle, if you will, it just becomes, you know, sort of normal, I guess. Totally. Totally. And it's funny, once you start seeing things, you can't not see them anymore. Yeah. Like, that's how I just view the world now. Is it, does it meet the needs of my friends and colleagues and those I haven't met yet, or does it not? Yeah, well, exactly.
29:32Well, Karen, I think that about wraps it up for this edition of our encouraging abilities podcast. Our guest today has been Karen Pasqua. She's part owner of Meaningful Access Consulting along with her husband. She works with developers, city planners and more to improve and create accessibility for everyone. And we need more of her. So thank you very much for joining us today. Well, thank you for this wonderful conversation. Thanks for tuning in. We'll see you next time.
 

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.
 
TRANSCRIPT
70 Years of Doing the Impossible
 
00:05Hello again, welcome to another episode of DDA's Encouraging Abilities podcast. I am your host, DDA's Communications Manager, Evan Kelly. Now this is a special podcast because we are focusing on Developmental Disabilities Association's 70th Anniversary.
00:20So for 70 years, and from a very humble start, DDA has been advocating, supporting, and transforming the lives of people with developmental disabilities. So since 1952 to 2022, I should say, we in the organization's pioneers have been moving mountains, transforming the social and political landscape for some of society's most vulnerable people here in BC and even across Canada. I'll try to offer the abridged version to listeners. Now DDA began when a woman by the name of B. Purdy
00:50B birth to a boy who had Down syndrome in the late 30s. Conventional wisdom of the time would be to have him live his life in an institution. So B pretty went against that thinking and kept him at home in the community where he belonged. She would gather about a dozen other families and start educating their children in a church basement here in Vancouver. Now through lobbying the provincial government they gained funding to open the first publicly funded special needs school in Canada. That was just one of many innovations.
01:20big fast forward to here in 2022 where DDA has over 500 staff and supports about 2,000 people and their families every year. We have numerous programs from early intervention and infant development to robust employment programs and many fun and educational programs for families in Richmond and Vancouver. So joining me today is our very own executive director Alana Hendron. Alana has been a leader of the developmental disabilities field for over
01:50She received commendations for her contributions to the downsizing of institutions in BC by developing community services and promoting inclusion. As Executive Director of DDA for the last 25 years, she has worked with board members and staff teams to build a strong financial foundation and innovative quality support for individuals with developmental disabilities and their families.
02:16So thank you for joining us. Now 70 years, what do you think about when you hear that number? Well, I think 70 years is just fantastic. And certainly the progress that we've seen over that 70 years has been phenomenal. Our goal is to continue to drive it forward and continue to advocate for inclusion for everybody, not just people with developmental disabilities, but everybody.
02:45uh... because we know that in the in an inclusive world everybody wins you've been in this uh... field for forty years what made you decide to get into this line of work well i always had this drive to help people and i wish i had a drive to make money or do other things but i always wanted to help people so when i finished university i got a degree in psychology
03:11and realized that a lot of people didn't want my help. There's a lot of people who have a lot of problems, but they don't really care. So I worked with people who had substance abuse disorders before I worked at Pearson Hospital. And when I worked at Pearson Hospital, what I found was that the folks who lived there loved attention, they really appreciated any help.
03:40Sometimes they appreciated somebody just saying good morning to them. So I realized that people with disabilities were a group that were in the position they were in through no fault of their own. There certainly was not a choice. And they really wanted to develop and learn and participate in the community in a way that my skills could be beneficial.
04:10And so, how did you get involved with DDA then? Well, I've known about DDA, of course, since I entered the field, because it was the first agency in all of Vancouver. When I worked at the Sammy Imelho Society, of course, DDA was a leading, it had developed so many new innovative projects, that it was an organization that people wanted to be a part of.
04:38At Sam Yamu House, it was a smaller organization in White Rocks House, Surrey. It was a great place to work. I loved the people, but I was looking for a bigger challenge. So that's when I came to DDA. And during my time at Sam Yamu House, I was involved in supporting B. Purdy's son. So having been involved working with Bob,
05:04I had a chance to meet B. Purdy and had done a little history of Samy Amuha Society, so I spent a lot of time with her talking about how the association started, what some of their challenges were, how she overcame them, and what she thought about the whole sector developing around her original ideas. Yeah, now she, of course, as we mentioned, is DDA's founder. What was she like as a person?
05:33She was a very formidable woman. If she wanted something, she would go out and get it. And if she was not pleased with the service that she was receiving for her son, she would more than let you know it and offer solutions, which a lot of times people complain, but they don't offer you the solutions, whereas as Bea did. And she had a great deal of love for her son, Ba, who had Down syndrome and was a real character.
06:03And the problem was I spent time at her house and she had this picture of Bob when he was a child with his brother John. So when I finally met brother John I was shocked that he was a senior citizen.
06:20and we lost Bobby.
06:22I think he was about in his 50s. Yes, he was. He was playing baseball and was running around after hitting a home run, and he had a heart attack, unfortunately. But he was always very happy that he died doing something that he really enjoyed. Yeah, that's, I mean, you know, his brother John has told me that story as well. It's, I mean, it's hard, almost hard not to smile at that. Yeah, yeah. Getting hit in the head, running around second, and having a heart attack. But that was the kind of guy Bob was.
06:52be very lucky. I mean all sorts of people loved him. He was very friendly, he had a great sense of humor, and had been offered the best that life had to offer at the time that he was around. So what was DDA like when you started here?
07:13Well, when I started, the association had a lot of financial problems. So that was the biggest challenge, sort of right off the bat. Then there were other problems, like the computer systems weren't very well developed. There were a lot of...
07:34problems. But when I first came, you know, the number one challenge was balancing our budget, getting out of a deficit. We were in a negative equity situation, so that could not be sustained. We had lots of great staff, but they weren't organized in a very systematic way, so policies tended to be different depending on what department you might be in or whatever. So it was
08:03The main goal was to make some money and bring everybody in DDA together so that we were all sort of rowing in the same direction and not at cross purposes. Sort of streamline the process and kind of make it better. And was that just your vision that you brought to the organization? No I think it was my assessment of what needed to be done and certainly the board was very keen to you know to get over our financial problems.
08:32And so what changes have you managed to bring to DDA that sort of stand out for you? Well, the first change had to be cultural because DDA had endured a strike. And during this strike there was a huge amount of resentment between the bargaining unit staff, which was the majority of our staff, and head office. So there was this really negative perception of head office. And in many ways it was well earned.
08:58There was not a lot of consistent policy, as I say. There were a lot of the human resource practices were certainly not best practices. And we had people who worked in child care that didn't even know residential existed, and people in vocational services that sort of did whatever they wanted instead of things that were productive for each client. So there were a lot of outstanding HR issues to deal with as well.
09:28How do you measure success in your position? Was that where the board members guided? Or do you sort of?
09:39look at yourself and go, okay, this is successful, this isn't. How do you measure it? Well, most executive directors or CEOs are measured by their financial success. So on that measurement, we've been extremely successful because we had one thing we don't talk a lot about now is our business, which was our partnership with Value Village and all the clothes that we picked up and sold. It turned out that the business had a lot of potential.
10:09when I first came to DDA is that there was just so much potential. It just had sort of crumbled over the last previous, say, decade. You want to look at the financial stability of the organization and the success. You want to look at employee satisfaction, client satisfaction for sure. And when I first arrived, there were a lot of families that were extremely dissatisfied with the services they were getting.
10:37to the point that we had regular town halls and got yelled at a lot. And a lot of the families were quite correct.
10:45So the first thing we had to focus on is how do you turn a culture around to start refocusing on the people that we support instead of themselves or what's going on in the sector or what families want or the million and one other things that come up. So one of the things that we did was come up with Alchemist, which was a way to plan
11:15plans for each individual client. So one thing we knew we wanted to do was not to babysit people but to actually figure out what their goals were and what were their dreams and their wishes. So in doing that, we actually ended up re-viewing all of our vocational sites and we ended up moving them all in a very short period of time.
11:41There was also legislation that passed that was coming into effect that said anything that looked like work was work and everybody who did work needed to be paid minimum wage. So there were a lot of clients who were making a dollar, two dollars a day under the old sheltered workshop system and that was deemed exploitive, which clearly it was, although it was considered an activity kind of program.
12:07So what we did is we ended up interviewing every one of our individuals that we served in day programs and their families and developed a plan in terms of what they wanted to do. The majority did not want to sit in a sheltered workshop.
12:25There were people who wanted to do a lot more recreation, a lot more education, a lot more community awareness and community involvement. People wanted to volunteer, people wanted to work. We already had a great program going with Jobs West in terms of employment, so we supported that.
12:44And there were people who still wanted a sheltered environment because they had worked in that environment for all their lives and felt that that was the perfect place for them. They had tried working in the community, didn't like it, and just felt that they needed that extra support. So we figured out a way to pay the minimum wage when we started Star Wars, which we consider sort of a little business within DDA. But.
13:09The goal of the business was not to make money, it was to employ people. And we're very, very happy that we've been able to employ hundreds of people at Star Works and help some of them move on to paid employment outside of the sheltered environment. It generates revenue, nearly a quarter of a million. Yeah. More than a quarter of a million this year. Yeah, so that just lets us hire more people. Yeah, and that's just one of the big things where DDA has been an innovator. So what are some other ways
13:39over the past seven years where DDA really has sort of raised that bar of innovation? Well I think Alchemist was an innovation because it used computers to help us determine how many hours of support everybody needed in order for their wishes and goals to materialize. So that helped focus everybody on clients. It helped focus people on the...
14:05people we support as developing human beings instead of people who are just in need of basic care. It really allowed families to get involved in the planning, which they hadn't necessarily been before. So that was the big thing, was focusing everybody on each individual and what they wanted.
14:28The other thing that needed to be supported, of course, is the staff, because they're not going to be too keen about supporting individuals if they themselves feel that they're not valued. And certainly the wages that we've paid over the years have shown a lot of people who work in this sector that they weren't as valued as they should be, and I totally agree with them.
14:51So one thing I've spent most of my life doing is lobbying for higher wages for the staff who work for us because people think anybody can do it and they can't. It's a hard job. It requires talent. It requires creativity. It requires in some cases a lot of thinking about how to approach people based on their
15:21It takes education and it takes a lot of stamina in some cases. So I think our staff deserve a lot more. They're in bargaining right now and I hope they got what they asked for.
15:35Now in terms of other innovations, I know DDA because while I work here, infant development was something that was, I mean, was DDA one of the premier organizations to realize that early intervention could make a difference? DDA was one of the few organizations in the world that realized that infants needed extra support.
15:59right from the get-go, that you have to work with what you've got and work with families so that they could support their child in a way that was going to maximize that child's development. And at the time, the people had no idea how successful it would be. In those days, we didn't know that those were actually the most important years for brain development. So I look at kids today.
16:29and by kids I mean young adults, and it's a completely different story than it was when I first started. When I first started, people had no access to IDP, they had no access to inclusive child care, which again DDA was involved in. They had no limited access to inclusive education. That really only came along after. So if they were lucky, they were...
16:57registered in an inclusive school, most people were in the institutions. So the image of someone with a developmental disability was someone who had far greater needs than they do today. And the key, I think, has been infant development, which, you know, as Dana says in the documentary we made, there was just one book with, you know, a little bit of information in it.
17:21And now there's just thousands of journal articles, there's research in universities, and it's just been spectacular. And the other thing is, is that it's had a benefit for early infant development of kids who don't have disabilities, because you can apply the same principles and help to enrich any child's environment so that they're going to learn and maximize their curiosity and what they know about.
17:51It's just these days it just kind of seems like common sense. Exactly. It's like so many things today that we take for granted. People don't understand how much work it was and how much risk people took along the way to try to promote such ideas because they weren't necessarily welcome in the broader community. I mean as Dana says, the medical profession was very difficult to deal with originally because of course...
18:15to them a developmental disability was a medical issue and now of course we see it as a social issue. Of course it's a medical issue in some cases but also it's a social and communication is really important certainly through inclusive education. People are far better communicators now than they were back in the day.
18:39Of course, my big thing at DDA, which I think is very innovative, is all of the technology that we brought in. DDA is a very computerized organization. We have, you know, our whole...
18:53organizational infrastructures based on computers. But we also have a lot of computers out that are used by the people that we support. And what's really exciting to me is seeing the work that our assistive technology department is doing in terms of supporting people with a whole range of diverse needs to maximize their development. And when you think about it, computers are memory.
19:22So they provide added memory for all of us and processing speed. So those are two things anybody with a neurological disability needs more of memory and processing speed. So I think there's still a ton of, of, of possibilities in the future for using assistive technology to augment people who have maybe diminished brain function. Certainly the Alzheimer's community.
19:52you know even though it's degenerative I think there's lots of ways that we could start studying how iPad use and other program use around communications and and so on uh... can help I mean we all use computers every day I know that they help me and they help me with my memory that's for sure set that reminder yes exactly so you know why not everybody
20:19Now for the listeners, Alana mentioned a woman by the name of Dana. Now that's Dana Brinnelson. She was sort of at the forefront of our infant development program back in, I guess, the 70s, I guess that would have been. And Alana also mentioned this documentary. So I'll just mention that right now is that this year we, to help celebrate our 70th anniversary, our videographer David Osear created a documentary called Doing the Impossible, the story of the Developmental Disabilities Association.
20:49that is available to be seen on our website you have to go to www.develop.bc.ca it's there, it's available on our YouTube channel as well very very much worth the watch and a very very excellent job by our videographer
21:05So, moving on a little bit now, also talking about in that documentary a lot is how we got rid of institutions in BC. What role did you play in that? I was really lucky because I worked at San Diego House Society during the downsizing and the board at San Diego House was very anxious to support the downsizing. So, if you can imagine, you would go into the institution
21:32and the social workers there would group people into groups of four because at that time the optimal residential size was determined to be four. So the social workers would group people into groups of four and generally it was people who knew each other in the institution or maybe had similar sort of behaviors or disorders or whatever. So I would go out and get to go and meet them and then plan.
22:02their lives in the community. So that meant buying a house and turning it into a group home. It meant hiring up a bunch of staff. In those days, they made $8.50 an hour, so it was extremely difficult to recruit. And it was sort of a new job because there were community living positions, but only in the existing community associations, which weren't very many in those days. So,
22:32I felt like Martin Luther King. You know, you go in, you buy a house, you bring the folks out. We had to stagger, you know, generally for them to get used to it. You know, they'd go to the institutions, we'd pick them up and bring them home. We took people shopping so that they could pick out their own furniture. And then the challenge was building community capacity around folks. So...
22:58you know, think about a lot of things, but doctors, we had to get doctors for everybody, and the doctors in the community in those days didn't know anything about people with developmental disabilities, because they'd always just been in the institutions. Getting dentists, getting mental health support, none of that existed in those days, so we had to work with...
23:19allied professionals to build that capacity and unfortunately some of that has worn away over the years in the sense that psychiatrists for example are extremely hard to get for anybody these days. I think there's a two to four year wait or something like that. So it's always been a challenge. And then of course at that time people weren't necessarily accepted in the community because they were.
23:49isolated from the community and institutions for so long. So there was a lot of community development that had to be done just with your local neighborhood bakery and your save on foods and just the regular places in community where people go on a day-to-day basis. We also.
24:10we're working with a bunch of folks who'd never really had any fun before. So we had great times taking them out and going to movies. There was one fellow who came out of an institution and he was in a wheelchair. And we had one staff that was extremely creative and decided that he had never really experienced freedom before so he took them ultra light flying.
24:34And you know people... There has to be some video of that somewhere. Well there wasn't, but because they didn't, we didn't have video cameras in those days. But it was so much fun. And I think that was the most rewarding part is seeing folks come out of the institution and just blossom. And for the first time in their lives, make choices and decisions about themselves.
24:59That was going to be my next question. What was that like witnessing that sort of transformation? It was extremely rewarding. Extremely rewarding. And in some cases, you know, people came out of the institution with a list of medications as long as your arm. So sometimes just taking people off of this medication helped because then you could see who the real person was underneath all that and hopefully get better treatment for them in the community.
25:29I guess particularly in BC now, because we know there are still some institutions in Canada, how much better are we and how much further do we need to go?
25:41Well, I'm a bad person to ask about how much further do we have to go and what better can we be because I always think that there's more that can be done and we could develop and deliver better services. We could create more independence so that people can live. You know, as long as you are dependent on others to live, you are not necessarily free.
26:11because you're dependent. And...
26:14some of the folks that we support have been dependent either on their families or on special education assistance in their school or on the government and the more you're dependent on others the less opportunity you have to make the decisions and choices you want to make around yourself and that's everybody that's not just person with people with disabilities.
26:44My goal has always been to help people become independent because the more independent they are the less they need to rely on other people and the more they can be free. I want to go back and talk a little bit about Be Pretty again. She was a woman who was so proud of her family. She was so proud of her son John. She was so proud of Bob because even though he did have Down syndrome he succeeded in the community and lived a great life.
27:14And she was so proud of her grandchildren. So she was an extremely family-oriented woman, which is why I think she spent so many of her years in early motherhood advocating for the kinds of community supports that Bob would need in particular. And she once said, I knew the world would not adjust for Bob.
27:43So that meant Bob and I had to adjust for the world. And I think that was profoundly wise. Because people in today's world, I mean, are even, you know, they're far more expressive, I guess, is the word I would use. I mean, people.
28:08in the old days had a certain sense of manners and there was no Facebook or social media that you would put everybody down on. People were nice. So generally people were nicer, but they still stigmatized folks with developmental disabilities. And in today's world, I think there's less stigma. I think there's more inclusion.
28:34you can have inclusion unless you have accessibility and so for people in wheelchairs or people with uh... challenges around vision or hearing uh... we still don't have a totally accessible community all you have to do is you know ask people and they'll tell you that there's a lot of places they can't go
28:57I've got a friend with a wheelchair and we were out at a show last Friday. We knew we could come in the front door, but there was only one way out the back and that involved stairs. Right, and that's if there's not a fire. Yeah. Right? So a lot of apartment buildings aren't necessarily accessible when you think about having to evacuate really quickly and you're on your own and you're in a wheelchair. So I won't be happy until we have...
29:26an accessible, fully inclusive world, and the way to do that is through universal design, basically. And I think a lot of municipalities have caught on to that, and so they are starting to reflect it in their building codes. The city of Vancouver right now has an accessibility plan, so I'm really thrilled about that. And I just hope that the reality reflects our aspirations.
29:53We're getting there. I think it's on a good path. Now, if you could send a message to everyone in Canada about disability inclusion and support, what would that be? It would be that it could be you.
30:07All of us, at some point in our lives, experience disabilities. Even if you've just gone into surgery and are home and you're recuperating, you're in a position where you're dependent on others and might have challenges getting out of the house if there's a fire or whatever. So, and certainly as I get older, I realize what some of the disabilities are that come with aging. And...
30:36you know, I'm quite fit still, but if I, if my arthritis and my hips acts up much more then, you know, I could end up in a wheelchair when I'm older. So you know, a lot of people lose their eyesight as they age, a lot of people lose their hearing. So over time all of us have issues around accessibility and inclusion. And
31:01That's why I advocate inclusion, because it really affects all of us. It's not just about people with developmental disabilities or disabilities. It's about all of us and our safety and our well-being and our health. And I also think it's really important for all of us to get to know people who aren't like us. Because otherwise we get into these echo chambers and these small little groups.
31:30and that's all we hear and those are the only people we see instead of sort of broadening our horizons to meet all sorts of different people because everyone has something to contribute. Absolutely. Do you have anything else to add on our 70th anniversary? Well, I would just like to say that 70 years at DDA means we've had 70 years of employees.
31:54and our employees have actually gone on to work as physicians, physiotherapists, speech and language therapists. They've gone on. Some are probably actors. I mean, all sorts of people have worked at DDA and felt that it was extremely rewarding, and a lot of people have made it a career. So I would just like to thank all of the staff that we've had over
32:24this fantastic position where we're in now, where people are more and more included in everyday life, people are becoming more and more independent, and there's more and more tools available for all of us to reach our full potential. I think that wraps it up.
32:42Sounds good.
33:12Association. It's a fantastic piece of work put together by our filmmaker David Poorsier and it's really worth checking out. Bye for now.
 

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

DDA Talks to Delia Meinhardt, Assistant Director of Employment with Jobs West

Finding a job is a dauting experience for anyone. Now, imagine having a developmental disability. There are many barriers that can prevent you from finding work and gaining independence. Fortunately, there are people like Delia Meinhardt who helps run DDA's social enterprise operation, Jobs West.
 
TRANSCRIPT:
Evan Kelly  0:05  So welcome to Developmental Disabilities Association's Encouraging Abilities podcast. Joining us today is Delia Meinhardt. Now Delia is the Assistant Director of Employment Services at Jobs West. Now, if you don't know what that is, that is one of DDA's social enterprise operations. Jobs West is an employment service that connects clients with developmental disabilities with employers to help the client find and keep a job but also works with the employer to ensure success of the program. Job West fosters inclusion, community and independence for its clients. Part of that success, of course, is ensuring accessibility for everyone involved. So thanks for joining us today, Delia. Now, can you take us through the process of finding a client and getting them a job, sort of, you know, if you're gonna bridge it sort of start from finished?
Delia Meinhardt  0:54  Yeah, sure. So our client referrals come to us through government programs, such as Community Living British Columbia and work BC employment services. We also find potential clients when we're in the community presenting to local high schools and colleges, we will support them with accessing our service. So before our client can get a job, what we do is we do some prep work with them. So we take the time to discover the person's skills and abilities. Identify what type of environments are ideal. So for example, do they prefer to work independently versus within a team? Do they want to work outside versus inside? We assess work skills, provide skills training, and clients attend implement workshops. Workshops, such as how to write a professional resume, ways to ace an interview, dress to impress, how best to communicate with your colleagues, time management, and what are implement standards. After that we move into placement. We encourage clients to participate in informational interviews. So for those that aren't familiar with us, we schedule a time to meet an employer at the worksite to discuss their business, the industry, what skills are required for a specific position. If it's possible, we ask for a tour of the job site. This gives a chance for the client to see the site and whether it's an environment they would like to work at. Our staff meets with employers and discuss their current business needs. And we specialize in customized employment, which is customizing an existing position within a company as well as creating a new position. So for example, of how this can be a benefit for business, would be an employee in a management position, spending their majority of their time inputting data, compiling information or researching. All of those previous mentioned tasks could be allocated to a client freeing the manager to focus on high level business, rather than entry level tasks. Once a client is placed, we provide on site job training, assist with workplace accommodations if necessary. Once a client is fairly independent, we fade our support to follow up supports, which can look like check ins once a week, once a month, once every quarter. If there is retraining required or the job description changed due to promotion or restructure within the business, our staff can step right back in and support the client... support of the client and employer.
Evan Kelly  3:11  Sounds really good. So how many different businesses does Jobs West work with currently?
Delia Meinhardt  3:16  Yeah, so this number kind of changes daily. Everyday we work with employers, whether it's to develop a new position within the company, provide disability awareness or diversity and inclusion workshops. So for example, like last year, we placed 174 clients in businesses.
Evan Kelly  3:31  Wow. Now, what's the process for outreach to businesses? Do you look for specific sectors? Or are there some styles or businesses that are easier to work with than others?
Delia Meinhardt  3:42  Yeah, so our staff tend to not necessarily look for specific positions or sectors. We meet with businesses to understand their business needs and see if we can provide a solution. So our staff are pounding the pavement knocking on business doors, they are tasked to develop business relationships with employers. So we're looking for entry level positions where businesses typically have high turnover in these positions.
Evan Kelly  4:07  Now clients, obviously, some of our clients, or your clients rather, have some very specific and individual needs. How do you ensure accessibility at a workplace? Is there a process that Jobs West goes through or a level of compliance that a business must have in place?
Delia Meinhardt  4:21  Yeah, so when a client starts work, or even before they start work, our staff goes into the business and kind of, kind of speak with the team and management and kind of get a tour of the site to ensure that the site itself is accessible. So accessibility is more than just ramps and large print monitors, although those are common things that make life easier for people. Accessibility is also about attitude and what a person can do versus what they cannot and many small changes for example, like a one hour difference in start time can be really meaningful to someone. So for myself as the employer at Starworks packaging and assembly, we know what it's like to employ people with diverse abilities. Not everyone fits a Monday to Friday nine to five, we have flexible scheduling, allowing part time work and break periods where someone may not be available due to a mental health crisis. Even at Starworks, we use talk to text technology for those with hearing impairments. So something that you and I may take for granted would be starting new job, and successfully complete orientation. We have supported many employers to revise their orientation handbook, so it is more accessible for everyone. So we will revise the document. So it's in plain language minus all the jargon.
Evan Kelly  5:36  So how much of the onus is on the employer to ensure accessibility? How much is on Jobs West, is there more of a sort of a team effort?
Delia Meinhardt  5:43  Yeah, no, definitely, I would say team effort, I guess the duty to accommodate and ensure accessibility. It is teamwork, but it's mainly the business, they have to ensure that they are being inclusive, and they're allowing workers to participate fully. Employers should make every effort to be more accessible. Unfortunately, without disclosing a need for accommodations, sometimes employers won't likely provide those tools. So as part of our services, we can assist in making things more accessible, or even applying for accessibility and accommodation grants to tweak someone's workspace.
Evan Kelly  6:17  Also, the grants, okay, so what are some sort of common issues that you face with employers in terms of accessibility? And how did you overcome that?
Delia Meinhardt  6:24  Yeah, so many employers that we work with or start the conversation about our services have no understanding or knowledge about the population we work with. So part of our role is to provide the information and educate them on what accessibility looks like. So for example, let's talk about the interview process with a potential hire. Before the applicant comes into the office, are we asking them if accommodations are required? Is interview location at an accessible location? So are we looking at lighting, so I myself do not necessarily like sitting under a fluorescent light. Are there even any physical barriers for the person coming into the office? Employers should stick to using common use words and stay away from jargon. So shorter sentences using active voice rather than passive, ask skill based questions rather than complicated behavioral questions. There are alternatives for individuals who may struggle to verbalize their experience and skills. So what we love to do is a working interview. So the client tries out the job for a couple hours. This gives the opportunity for the client to understand the job and gives the employer the opportunity to identify if the client has skills to meet the minimum requirements. Another thing we do is we do a lot of unpaid work experience, this can be a multi day trial of the job to ensure an employee match or a wage subsidy to support with training and accommodations are required. A lot of our employers are hesitant to provide accommodations, they believe it will cost 1000s of dollars, in actuality, the cost is actually less than $500. So most times this can be covered through assistive technology funds.
Evan Kelly  7:58  Now that was you know, so that was my next question. So do you find most employers are relatively easy to deal with in terms of getting employees in place and doing the job?
Delia Meinhardt  8:06  Yeah, so for many of our first time employers, it's a new experience, one that they are kind of uncertain about. So as part of our service, we support employers with next steps: how to place an individual's diverse needs in their company. We spend time educating employers, we hope the message stream down from top to frontline staff, with open communication and similar views on outcomes, it can be a success.
Evan Kelly  8:28  Now, what about, you know, typically developed employees? Do you see any issues sometimes there? Or do you find most people are accepting and welcoming of people with neurodiverse needs at work?
Delia Meinhardt  8:40  I myself don't generally see an issue. I see people who are unsure and don't have much exposure to some of the folks we work with. So with time the employees recognize that the individual is contributing to the workforce, just like them, they have a role to fulfill. So what we see most often is there is at least one person on each team that has a friend or family member with a disability. We identify these individuals and teams and really champion them. They are the individuals who know that people with diverse needs have something to offer. And we see team morale increase, we even see employees adopting training materials that we put in place.
Evan Kelly  9:18  Yeah, absolutely. Now, moving on to the Employer of the Year, each year we give out this Employer of the Year Award, or rather Jobs West does, what does an employer have to show to earn that level of recognition given that we've got, you know, dozens of employers?
Delia Meinhardt  9:33  Yeah, so Disability Employment Month in British Columbia is in September, and we present an employer with the award as you mentioned, it's always difficult to narrow down because we work with a lot of incredible employers. We look for someone that has committed to an inclusive workforce. Willing to champion this partnership with Jobs West, and understanding that hiring someone with a diverse pool of talent is not charity, but it is a business need.
Evan Kelly  10:01  Now you mentioned your 177 people you found jobs for in the past year? 
Delia Meinhardt  10:07  Very close 174. 
Evan Kelly  10:10  Is that a good year? Or is that a sort of an average year for Jobs West?
Delia Meinhardt  10:13  It's our best year over the last 10 years. We had a little dip when pandemic started. But it's just gone up. And even during the pandemic, we got creative with businesses and created and carved new positions that really spoke about high touch areas, sanitization, really catering to those needs.
Evan Kelly  10:35  So, I mean, from your perspective, is this is this sort of a growth industry? You're seeing growth, just sort of every year in the work you do?
Delia Meinhardt  10:42  Yes. 100% I think right now. It's definitely a job seeker market. I think we have a diverse pool of individuals who have  skills to contribute. So it definitely is growing.
Evan Kelly  10:58  That's amazing. And we know through research that having a neurodiverse staff, as you've mentioned, is good for a lot of reasons for morale. We know, the neurodiversity community are very, very hard working and very attentive, employee retention actually gets better, which all helps keep costs down and more. So do you see this reflected in the work that you do?
Delia Meinhardt  11:18  Yes, absolutely. Our clients who seek those entry level positions are loyal. They are longtime employees who bring commitment to their positions. For example, this year, we're celebrating a couple of big milestones. One individual who works at a local community center celebrating 10 years and another working at a Vancouver sports team is celebrating 15 years. We pre-screen applicants for employers, we can essentially be their HR department, employees tell us what they are looking for, and we find that for them. Another benefit as a company, you could be demonstrating corporate social responsibility by promoting diversity in the workforce, which in turn increases employee morale. Employees with Disabilities typically have a lower turnover rate. What else, there's a lot of other things, 86% had better or or equivalent attendance than their peers. It just makes sense to hire individuals with diverse abilities.
Evan Kelly  12:12  So what's one of the most successful job matches you've been a part of?
Delia Meinhardt  12:15  Yeah, I got I guess, two stories for you. One was actually in 2009. We partnered with Starbucks Canada to create the cafe attendant position. So you may walk into Starbucks and you may see someone that's not behind the counter, but people kind of roving in between the tables. Our staff spent a day at one of the busiest Starbucks location in Vancouver with a latte in hand, the staff observed the day to day operations. We recognized that baristas had many different roles, customer service, making coffee, restocking pastries, clean tables, floors, washrooms, dishwashing, and the list goes on. So from there, we saw huge lineups and people leaving the store because they couldn't wait any longer for the coffee. So we propose a carved position, the cafe attendant will take on the entry level tasks freeing up staff to provide customer service and to be more efficient with completing orders. That's just one of them. 
Evan Kelly  13:13  Oh, that's good. We know we like Starbucks. Did you want to talk about the the other success story?
Delia Meinhardt  13:20  Yeah, no, for sure. Um, I guess the other one is we supported an individual to, like they've never had a job before. So we worked on creating a resume, trying to find those experiences through high school. We prepare them for interviews, as well as explore different jobs. After spending time together, we recognized her love for flowers, and her amazing ability to focus on details. When we took the client for a tour at a local grocery store, she was seen spotting expired products on the shelves, in the floral department, she was picking the dead leaves off the flowers and plants. It didn't matter that a client didn't have the same education or work experience as her fellow colleagues. The supermarket was quick to recognize her abilities and hired her in their produce of floral department. So they recognized the benefits of having her on the team. I mean, like how many times have you come home with expired products? Try not to, but wouldn't it be great to have someone just dedicated to ensuring that all the product is fresh, therefore it leads to great customer service.
Evan Kelly  14:22  Now so in terms of the your hiring, you know, the the clients that you work with. You mentioned this last one was their their first job experience, are the majority of people that you work with, is their first job or is there an age range where people have been employed before?
Delia Meinhardt  14:36  Yeah, no, it's quite a large range. We have people coming out of high school with limited work experience. And we have people that actually have post secondary education, lots of experience. A lot of folks come to us because they find it hard to maintain employment, so we support them with that.
Evan Kelly  14:54  Well, that's good. Now do you see society at large getting better at including people with diverse abilities are we, are we playing a game of catch up?
Delia Meinhardt  15:02  Yeah, no, I think businesses are more open to diversifying their workforce. They may not know where to start. And that's where we come in the picture. We support businesses with their diversity and inclusion strategies. So I would say over the last 10 years, I'm using 10. Because I've been at jobs west now for actually more than 10. It's been 15 years, there's definitely been a shift towards facilitating accessibility and inequality in the workforce. So government programs such as work BC, provides free services for people with disabilities to find work in BC. Jobs West is actually subcontractor, and we work with individuals in the Lower Mainland to find a customized employment. There's also other programs the government have put in place like assistive technology, where they fund assistive technology for individuals.
Evan Kelly  15:46  Now, kind of a personal question, is the government in your mind doing enough to facilitate this kind of accessibility and equality in the workplace? Or could they be doing more?
Delia Meinhardt  15:54  I think it's a good start. I think there's a lot of programs right now. And we are tapping into those programs to support people with disabilities.
Evan Kelly  16:04  What would you like to see happening more of or what can society be doing better for accessibility or creating opportunity?
Delia Meinhardt  16:10  I think it comes down to just I would like to see more conversations about what our folks can do for businesses. We spend a lot of time going to businesses and providing workshops such as disability awareness, as well as workshops on how to create tools and accommodations in the workplace. These workshops are usually held over lunch hour, but I just want to see more discussion. More discussions and questions and how we can better be more inclusive.
Evan Kelly  16:38  So how can how can people find out about these workshops? 
Delia Meinhardt  16:41  Yeah, so they can go on our website, and they can contact us through the website, or they can give me a call. And these workshops are free, so we can come on site, or we can do it over zoom and kind of support your team.
Evan Kelly  16:55  Now, the website, of course, is jobswest.ca. Very simple to remember. Just a couple more questions for you, Delia, what got you interested in this line of work?
Delia Meinhardt  17:04  Yeah, so I'm studying psychology at UBC and minored in family studies. I've always wanted to work in the social services sector. So before my time at DDA I was actually working with kids with autism. And I just thought the next step would be working with adults. So after a few years at DDA, I applied for the employment specialist position at Jobs West and just loved the position and program. I kind of got to do a little bit of everything. So I would have to go marketing, I would have to job train people at different sites every day. And I love doing workshops.
Evan Kelly  17:35  So you really like doing this kind of work. So what kind of training, I mean, you mentioned that some of your schooling with schooling, what other kinds of training is required to be part of a team at Jobs West?
Delia Meinhardt  17:46  Yeah, so if anyone is interested in working at Jobs West as an employment specialist we require experience in education in a social science field. Obviously preferred experience with diverse population as well. As for training DDA has a comprehensive online training program where staff can sign up for courses related to customized employment. And our management team also provides hands on training for new staff.
Evan Kelly  18:09  You've been listening to the Developmental Disabilities Association's Encouraging Abilities podcast. My guest today was Delia Meinhardt. She's the Assistant Director of Employment Services at Jobs West. That is one of DDA's social enterprise operations that helps connect neurodiverse clients with employers for success. Thank you for joining us today. 
 

DDA Interview With Christie Faye Collins

Christie Faye Collins is Autistic. Like many in the disability community, finding a partner isn't always easy. So, she is creating NOMI. A new dating app specifically for the disability and neurodiverse community. www.nomiconnect.net is still in the testing phase and Christie and her team hope to have it up and running in 2023.
 
TRANSCRIPT:
Evan Kelly  0:06  Welcome again to the Developmental Disabilities Association's Encouraging Abilities podcast. We are here to connect with people in the disability and neurodivergent communities to help tell their stories. As much as 25% of Canadians identify with having a disability so there are certainly plenty of stories to tell and awareness to raise. Today we are joined by Christie Faye Collins. Christie is a young web developer based in Victoria, BC. She is also part of the Autistic community and has built a new dating app called Nomi, that targets of disability in neurodivergent communities. So welcome to our podcast, Christie.
Christie Faye Collins  0:42  Hi, Evan. It's so nice to be here. Thanks for having me.
Evan Kelly  0:44  Yeah. Thanks for joining me today. So tell me a little bit about yourself.
Christie Faye Collins  0:48  Yeah, well, my name is Christie. I'm a part of the neurodivergent community. I'm autistic. I live in Victoria. I recently moved here from Montreal a few months ago, and I had grown up on the west coast. So it feels really good to be back home. And right now I'm working on an app called Nomi, which is for the disability and neurodivergent communities.
Evan Kelly  1:11  Now, Nomi, the website for those listening is nomiconnect.net. So that's where they can find you. So you are a web developer, so are you a one person army in this thing? Or tell me a little bit about how you're putting this together.
Christie Faye Collins  1:29  Yeah, so I'm a web developer. But when I first started this company, when I first had the idea, I quickly realized that it would be a lot of work to both be the CEO, and do all of the technical work. And I also would have had to learn a native web development language, which is what you need to know to build an app for the App Store or Google Play. So I personally am handling all of the non-technical stuff. And I have a couple of people working on the iOS app. They're currently working on a prototype so that we can start user testing very soon. And yeah, they've just been absolutely amazing. We get to bounce ideas off of each other and it feels a lot less lonely, having a company, having a thing that I'm working on every day, without having any external kind of validation, or having people who I can talk to you when things get difficult. So that's just been absolutely wonderful. It's a great experience working with them. And they're both really passionate about the project as well.
Evan Kelly  2:37  Alright, sounds good. So to be clear, for listeners, that Nomi is still sort of in the testing in prototype stage, it's not up and running yet?
Christie Faye Collins  2:46  Exactly, yeah. So we're hoping to have it up and running by 2023. Of course, also, if anybody wants to participate in user testing, you can send me an email through the website. But yeah, for now, we are just working on a prototype so that we can really hash out exactly what features people really want and need. And we can meet and hopefully exceed those needs with the first run of the app. And then we'll have it actually running by 2023. That's the goal. 
Evan Kelly  3:19  Now, where did you come up with the name Nomi?
Christie Faye Collins  3:22  Yeah, so I wanted to find something short and unique that people might find fun to say. I was bouncing around a few ideas, thinking maybe something alluding to disability or neurodivergence. But after a while, I was like, "Okay, I'll just figure something out. It'll be a placeholder for now." And I had recently finished watching - rewatching, my favorite show called sense8 on Netflix. And one of the character's names is Nomi. She's a self proclaimed hacktivist, and just an all around amazing and strong woman. And the name also just so happened to sound like "know me," like k-n-o-w-m-e, get to know me. So I felt like that was very fitting for an app that connects people with one another.
Evan Kelly  4:08  Now, what first inspired you to turn your efforts towards a dating app for the neurodivergent community?
Christie Faye Collins  4:16  That's a good question. I suppose I was kind of an amalgamation of a few things. I feel like community has been such an essential part of my life. I am very close to the people that I'm close to, if that makes sense. Like, I don't have very light friendships, I don't take relationships very lightly. And I know that that's true for a lot of people. So I just have a few select people and I honestly don't know what I would do without them. So I really wanted to aid other people in finding that. I feel like for myself, I was really fortunate to have found the friend group I found, I kind of fell into it. I was friends with my sister's friends, and then I found my own friends through them. So I think that that was a wonderful experience. For me it was, it was really lucky, I just felt very lucky that that happened to me. And of course, I developed those friendships and relationships past that point. But for a lot of people, it's more challenging for them to be in social environments. I didn't know that I was autistic at the time. So I tended to go out more, and I didn't realize why I was so burnt out after. So I would go out and do the things, and meet the people, and then be exhausted for days because I didn't realize that I was overstimulating myself. So now it actually is more challenging for me to find friends and develop friendships. Because what a lot of people want to do is go to bars, go to parties, go to the club, and I just can't do that. Can't do that as consistently anymore. So we need to find alternatives. And a lot of my friend group just so happened to also be neurodivergent. So that's another reason why I was so lucky, not knowing that I was autistic and finding friends who were also any array of neurodivergent. Yeah, so I really just wanted to create something that could help people who may feel overstimulated in social environments and find it more challenging to get out there and find friends and relationships.
Evan Kelly  6:36  So I guess it's safe to say that through your own research and experience that others in the neurodiverse community were having these same issues.
Christie Faye Collins  6:44  Yeah, exactly. The more that I learned about neurodivergence and talked to folks in the community, the more I realized that friendship is an issue that is so real for so many people, finding friends, maintaining friendships is a real challenge. And so many people find themselves feeling isolated and lonely because of it. And there's never going to be a clear answer to this problem. But the goal in creating an app for people to build their community is that we can provide a resource for people to intentionally build relationships from a place of common experience. A lot of neurodivergent people also including myself, appreciate structure. So taking a structured approach to dating and friendship by intentionally seeking out people in your community with similar interests could be really beneficial.
Evan Kelly  7:31  Yeah, absolutely. Now not to get too personal in your own experiences in sort of finding a partner, did you find that difficult in your in your adult age?
Christie Faye Collins  7:42  I definitely had more luck dating within my friend circle than online, so I didn't actually find it to be too much of a challenge. Before I knew I was autistic, I inadvertently surrounded myself with other neurodivergent folks who I felt I was able to relate very well with. And it was actually quite easy to start partnerships from some of those friendships. But it was mostly because I was really good at following the romantic scripts. So many of us learned very well established rules around romance and navigating romantic relationships. And I found the romance scripts to be an easy one to follow, personally. I've been partnered now for nearly four years, but neither of us knew that we were divergent - neurodivergent when we started dating, we just had a great connection and understanding right off the bat and looking back, I realized that part of that can most likely be attributed to our brains working in similar ways. But yeah, the real challenge for me in relationships came down to friendships, because I feel like there's less of a well established script for friendships, it's kind of easy to start hanging out with somebody, I used to be a hairstylist, so I learned to be very good at small talk. But when it really came down to maintaining those relationships, I needed people to be very, very clear that their intention was to be friends with me. And we would need to hang out consistently. And I needed kind of a more consistent, like validation and communication with that than a lot of people were able or willing to provide. And I probably also didn't know that I needed that at the time either. So the beginning part of friendships was difficult for me and still continues to be and there's also less of an established script for breaking up with friends as well. Because if a romantic relationship isn't working, you break up you go through that process, there's a bit of a grieving process a lot of the time and then you move on and you find another romantic partner if that's what you want. But with friendships, friendships tend to just fizzle out. One of you ghosts, one of you moves on and it just fades into the background. And that I don't know what to do with. That's a bigger challenge for me.
Evan Kelly  10:11  I understand. So when it comes to sort of putting this, this app and this website together, what sort of feedback have you received? I mean are you hearing from people in your community that are saying, "Hey, this is a great idea. I've tried sort of the online, regular online dating sites," if you will, like, you know, OKCupid, or something like that. Were they having less success through those type of sites? Do you have any any sort of data or insight on that?
Christie Faye Collins  10:40  Yeah, I mean, I have a very simple 123, on a scale of one to three, how would you rate your experience with the dating apps, you've used, and on this specific survey, we don't have too many responses to go off of, but the overwhelming response, so 50% of responders said their experience is a 1 with other dating apps. 42% of responders say that their experience is a 2. And only one person said that their experience is a 3, like the best experience with other dating apps. So yeah, that's kind of more just numbers based. But the real feedback that we've been receiving is that dating apps are not personal enough, you don't get to see enough about the person to make an informed decision on whether or not you want to start a conversation with them even. And the conversations kind of just fizzle out into nothing. And you're left wondering if you should start the conversation again, or just move on. So there's a lot of bad, like communication issues with dating apps. And there's also design issues, accessibility issues. So bright colors, animations, pop ups that come up asking you to pay for different features. And like screen reader issues. A lot of people have problems with dating apps, most people who use screen readers and dating apps together, encounter some sort of issues, not having alt descriptions on the images, not being able to navigate the app easily, but still needing connections. So doing it anyway. And it just ends up being a really draining experience after all that. So yeah, overwhelmingly, the response has been quite negative toward other dating apps. And we're trying to collect all of that feedback in order to avoid the problems that other dating apps have created for people in the community.
Evan Kelly  12:54  Gotcha. So I'm just gonna take a little quick break here right now for a PSA for the engineering health lab at KITE Research Institute. At the University Health Network, they are hosting a virtual conference on the national parks accessibility in Canada, this is a free event that will take place from August 23 to the 25th 2022, you can visit their website to register or submit an application as a speaker if you'd like, that's www.parksaccessibilityconference.ca. So that's all about making sure our national parks are accessible to everyone. And just a reminder, we are speaking with Christie Faye Collins, she has developed Nomi, a new dating apps, we're talking about online dating for the neurodiverse community. So obviously, starting a business like this is not cheap. I mean, you're doing a lot of the legwork yourself, are you are you doing this all on your own dollar? Are you seeking outside investment to make this happen?
Christie Faye Collins  13:52  We are seeking outside investments. So at the moment, we are bootstrapping the whole thing. We're just putting together different bits of free software, anything that we can access for free or virtually free. And that will actually get us to a place where we can present that to investors. So once we have our functional prototype, we'll be able to say hey, this is exactly what we're going to create. We've done user testing, we know that people need this, and then they'll be able to invest knowing exactly where their money will be going. So that will hopefully be happening soon. Living is not cheap. So I will need money very soon anyway. So yeah, that will definitely propel us in the right direction once we have investment.
Evan Kelly  14:50  So this is really meant to be a money making venture for you. This is going to be your job and your profession.
Christie Faye Collins  14:56  It will be, yeah. Many startups don't have have actual revenue real income for a couple of years. So we'll have to ensure that we can sustain ourselves for the first couple of years. But eventually, we will be making revenue off of this. And we're also planning on hiring, so far, most of our team is disabled or neurodivergent. And we'll keep up that trend throughout our whole hiring processes. So the internal team will be compiled, comprised of the community who tends to have the lowest income in Canada. So yeah, we'll want to have enough money to be able to pay fair wages to our disabled neurodivergent employees, and for me to make a living, and hopefully be able to give back to the community in a big way as well.
Evan Kelly  15:52  Now, here's a sort of a $64 million question, what about typically developed people or those people who don't identify with a disability or anything? Can they join? And if not, how do you, how do you make sure that there's only people on on the site who identify with these groups?
Christie Faye Collins  16:14  Yeah, so that was actually the question on our previous survey, as well, I had assumed going into this that neurodivergent, and disabled people would not want a neurotypical able bodied non disabled people to be a part of the app, because some people don't feel safe around people who are not a part of their community, and as a minority community safety is our primary concern. So I put the question out there assuming that the response would be no, it should just be a space for us. But we had a huge response in favor of having all types of people a part - to be a part of the app. So that's really lovely. It's, it's great that everyone wants to intermingle, socialize with each other. A lot of people gave personal feedback that they want to meet allistic people, they want to meet non disabled people. They just mostly want to be a part of a community where they're the majority for once. So yeah, they will be able to use the app, I suppose it just comes down to whether they want to be a part of it. So they're more than welcome to join, they can definitely be a part of it. Some people, there will be an option to just show users, just show other profiles that are similar to yours. So if you identify as disabled, you'll have the option to view other disabled folks. That's kind of what we're trying to navigate right now. So if you don't want to see people who are not, quote unquote, "like you," that's okay. That's something that you can do. But the default will be that you can view everyone who's using the app, and everyone who's using the app can view you as well.
Evan Kelly  18:10  I guess those like, how would you screen that? Like, how would you be sure that someone signing on signing up is a member of one of those groups?
Christie Faye Collins  18:19  We can't, it kind of just comes down to partially trust, we're also going to have a profile validation, but just to ensure that the person who created the profile is themselves. So we're not going to gatekeep for disability or neurodivergence, it will be kind of an honour system. So if you are neurodivergent, in the signup process, you can say I'm neurodivergent, if you're disabled, you can say you're disabled, if you're both you can say both. And then otherwise, there will be an option for not neurodivergent or disabled. And then from there, it will be at your own discretion after you filter for users, quote unquote, "like me." So let's say I'm autistic, I would select neurodivergent in the signup process. And then when I start using the app, I can filter for other neurodivergent people. There won't be like different categories, at least not yet. Because we do want to keep users' identities as private and safe as possible. So just using the larger umbrella terms, I'll be able to see other neurodivergent users, and then I will make the decision whether I feel safe meeting up with them or not.
Evan Kelly  19:41  Right, kind of pretty much just like every other dating website, I guess there's there is a bit of an honour system, you got to you know, unleash a little bit of trust, I guess. So, is the app going to be designed for a global audience, do you have visions of making this in multiple languages?
Christie Faye Collins  19:56  Yeah, yeah, definitely. Right now we are only releasing to Canada, we're going to do it on a kind of rollout basis hitting the biggest cities first and then expanding to the whole country. And then we want to expand to the States, that would be our next international goal. And from there, I definitely want it to be global. I don't know exactly what that looks like yet. But that is the ultimate goal.
Evan Kelly  20:33  Is this going to be free to join to start with? Or is there going to be a monthly fee, or is there going to be like ads that you can run to generate? How do you plan to generate revenue? I guess is the main question.
Christie Faye Collins  20:46  Yeah, we're playing with a couple ideas right now, I feel like the so the main business models or payment structures that a lot of apps are using at the moment is called freemium. So you have your free version, and that's heavily restricted. And then you have your premium features that you can pay for on top of the free version that will not be as accessible to lower income users. So if you, if to make the same amount of money, as let's say, Bumble, we would need to have our payment structure be free, and then the premium is $29 monthly. That's what Bumble's structure is. And that's just not accessible to anyone. I don't know how people pay that much for a monthly subscription to a dating app. So what we're thinking right now is a Pay What You Can monthly or yearly subscription. We feel like that would discourage unsafe users from accessing the app easily. And we feel like if everyone pays, everyone will be able to participate equally in the app. So everyone will have equal opportunity to find connection, rather than some people having a better opportunity to access connection than others. It will be very affordable, we're thinking around $5, that would be kind of the average payment would be $5. And that would sustain us and our team and hopefully allow people access to something that could be really valuable for them.
Evan Kelly  22:32  Did you have any unexpected challenges that you faced in developing an app like this?
Christie Faye Collins  22:37  Two main things, safety, of course, is our main concern. In terms of safety, we have a few established features and kind of attitudes, I guess if that's the right word to use, I don't think that's the right word to use. But I will explain. So, in terms of safety, we will have anonymous user reporting the ability to flag profiles that contain content against our guidelines. Eventually, we will either not allow photos at first or if we can, like photos within the chat when you're messaging with somebody until we can block unwanted pictures while chatting because that's a big problem for many people. Having the identity and profile verification before being allowed to interact with users will be a big one as well, because bots are a thing. They're mostly annoying, but they can be harmful, there can be scams. So we want to make sure that the person using the app is who they say they are. And the ability to block users, consistent moderation of the app. Just any other suggestions that people have, we're very open to it, we want to establish as many features to keep our our people safe as possible. And the other thing pertaining to safety, we'll be having a few videos and guidelines, and just general recommendations for keeping yourself safe outside of the app. So there will, of course be recommendations for keeping yourself safe and navigating the app itself. But outside of the app, we want to ensure that people are protecting themselves as well. So partnering with different organizations who have videos around consent and around establishing boundaries, and how to meet up with someone safely how to meet up in a public place and if they want to take you away from that public place, what to say or what to do. So just having a whole slew of guidelines to help users navigate interactions in general, and especially navigate interactions safely will be really big. And of course, accessibility, which I've mentioned before, that will be a challenge in developing. And that's why so many apps aren't accessible. Because it costs more money, they don't see the fast revenue response to making their app accessible. But if they made it accessible, the people who needed that accessibility would use their app. Makes sense to us. Apparently, it doesn't make sense to a lot of app creators. So yeah, making it as accessible as we possibly can constantly adding more accessibility features, and taking feedback really seriously from people who need more accessibility in technology will be a huge thing for us as well.
Evan Kelly  25:56  Yeah, I mean, accessibility is so important, you know, especially for an organization like ours. You know, I think we're about to refresh our own website. And we're, you know, that's the number one thing, we've got to make this website accessible for everybody. So I'm going to hit you with one last question. And then I'll let you go. From your perspective, has the cultural attitude towards people with disabilities changed in the last few years? How is that looking from your eyes? 
Christie Faye Collins  26:24  Yeah, I mean, I feel like a bit of an imposter answering this question. So I'll do my best to only answer to the extent of my knowledge. But I know that we have come a long way in terms of disability justice in the last few years, in the last decade even. And I know that we have a long way to go still. But I really think that media has given us a more consistent exposure to different bodies and minds and ways of living. And that has been embraced by mainstream media in a way that it never has been before. We started celebrating disabled models, TikTok also gives us a chance to hear directly from disabled creators in a way that we never have been able to before. And I think that's really beautiful. We still, however, are not at the point of creating media from a fully collaborative perspective, like mostly pertaining to mainstream media. So that's a huge missed opportunity. Because if you're going to create something about the disability community, or claiming that it's for the disability community, you need to talk to disabled people. Like that just makes sense to us. Yea, right? But it's still a huge problem where we're not being consulted about media about us, nothing about us without us holds true. But so many media creators are still creating content for allistic, non disabled viewers, without consulting disabled people. And we haven't yet reached the point of many disabled and neurodivergent people, or a majority of disabled and neurodivergent creators being celebrated for their own independent contribution to the world. Everyone's also familiar with, quote, unquote, "inspirational stories of disabled people living their lives," that leave viewers feeling warm and fuzzy. But those videos and stories tend to increase the stigma around disability more than anything. And it doesn't actually inspire real change in how we view the world and how we approach disability. It doesn't actually make people turn inward and look at their own biases, and stigmas around disability that they hold that they may not know about. So you can watch a video of somebody getting dressed and be like, "Oh, wow, that's so beautiful. Go them for existing." But that person is literally just trying to exist. So I think that with media, we have some beautiful aspects. And we also have a lot of negativity that we need to work through. But for the most part, obviously, we've come such a long way in disability justice in our own mindsets and exposure to different people. And overall, I think that it has changed for the better. But of course, there's always more work to be done.
Evan Kelly  29:28  Yes, that's true. And I think you know, with people like you jumping on board and creating opportunity for people in the disability community to connect with each other and build meaningful relationships, that can only push this forward. I think it's great. And I applaud what you're doing.
Christie Faye Collins  29:45  Thank you. Yeah, I'm really hopeful that it will help people, that's the whole idea. I want to know that we're helping people so we have a survey that if anyone's interested in they can fill it out on the website, and that will help us continue creating this for the community and not just what we think the community needs. So yeah, we're really hoping to help people and create an impact on our community in a big way.
Evan Kelly  30:24  And that website of course, is nomiconnect.net. You can take that survey there. Today we have been speaking with Christie Faye Collins. She is the developer of Nomi, a disability and neurodivergent dating app. Just to be clear, it's not up and running yet. They are still in all their testing phases and they hope to have it running by 2023. So Christie, thank you very much for joining us today. Hope we can raise some awareness for you.
Christie Faye Collins  30:54  Thank you so much for having me.