Encouraging Abilities Podcast

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.
 

DDA Talks to Nathan Shipley During National AccessAbility Week

Nathan Shipley was born with Cerebral Palsy. Today he is a public speaker and does not see himself as disabled. DDA reached out to him during National AccessAbility Week to talk about his life and what it means to build accessible communities.
 
TRANSCRIPT:
Evan Kelly  0:05  Welcome to the Developmental Disabilities Association's Encouraging Abilities podcast. Here we are on national accessibility week in Canada and we're connecting with people in the disability community chatting about their experiences, maybe what's working, what's not, and what we can all do better to promote accessibility and inclusion and hoping to raise a little awareness for the disability community. Joining me today is Nathan Shipley, a self advocate who has cerebral palsy and uses a wheelchair to navigate the world. He has a website called Rollingwithnathan.weebly.com. Thanks for joining us, Nathan. I'm happy you could be here.
Nathan Shipley  0:40  No problem at all. My pleasure. Yeah.
Evan Kelly  0:43  So what do public awareness events, like the national accessibility week mean to you?
Nathan Shipley  0:50  Um, good question. Thank you. I would say, always it's really good because it always raises awareness. It's always good to raise awareness. Especially to make places accessible is always important. And we're making good progress. But always having awareness weeks like this is always important.
Evan Kelly  1:24  So do you believe that weeks like this are helpful in generating public awareness?
Nathan Shipley  1:29  So yeah, I believe they're helpful in changing the narrative, however, like I was joking with my support aid earlier,  it should get to a point where there shouldn't have to be a national accessibility week. I mean, those, those are important and cool, all that stuff. But it should be, it should be just something that people should be aware of eventually, and most people are, fortunately, but it's always good, you know, always room to improve. Nothing, unfortunately, in the world is ever gonna be perfect. I don't think. As much as we try, right?
Evan Kelly  2:17  Yeah. Yeah. And you're in your 20s. Now. So, you know, obviously, you've been dealing with cerebral palsy your entire life, you've been in a wheelchair for that, for that time. Do you feel like things are getting better for the disability community?
Nathan Shipley  2:33  Of course, I would say in the last four or five years, there's a lot more awareness around, you know, building buildings. So they're not just... accessible is good. Being accessible is really good. But what they need to think about, and we will talk about this, is, making places accessible are good. But when they actually build the building, building it, so it's something called universal design, universally designed, and it's really acceptable, because accessible is good, but if you build it universally designed, it would save you money in the long run, because you won't have to renovate, you know, all the features will already be there. And that's a place where we're already going. So that is good. I would say the city of Surrey is a is a good example of that. They made a proclaim, they proclaimed last year, or this past year, I don't know when it was, that all civic buildings will be built to the gold standard, the ranking of the Rick Hansen Foundation meaning that there'll be no barriers to access, which is good. Does that make sense?
Evan Kelly  4:04  Yeah, that's, that's a really, really nice concept. I mean, for you know, for decades, since, you know, we've been around that whole idea of accessibility was was sort of, you know, good enough, I guess. And so when you enter something like that, where you have this concept, and it is a concept, there's this, this, this idea of universal design, in everything we do, is really maybe just a bigger, global perspective for the community at large. I really like that.
Nathan Shipley  4:34  Yeah, I mean, that's the whole goal of the Rick Hansen Foundation, is to instill that universal design principle, so that when they build buildings, they already think about that. They don't have to go in and, and spend like 200, 300, 500,000 dollars in the future, to build, you know, renovate. I was at a workshop yesterday for national accessibility week, they were saying 80% of the buildings that are built now will still be around twenty years from now. So it's not just now it's building for the future.
Evan Kelly  5:17  Yeah, so right now, from your perspective, what are the biggest issues you see, when it comes to accessibility?
Nathan Shipley  5:24  I would say that, it's not just, accessibility is good, but there's a lot of issues, you know, around housing, it's good, you know, building these houses, but, I mean, building these buildings that we were just talking about, but if you don't build, you know accessible, housing, that's affordable, and decent, then there's is no point, because where are all of us gonna live? You know, but I would say, the other main thing is the awareness.
Evan Kelly  6:06  Housing definitely is, you know, is an issue, especially here in the Lower Mainland, where it's so expensive, you know, I mean, we have we have homeshare people here who, you know, who get paid a certain stipend by the government to support and care for people in their home, people who have extra space. And that's for generally for people with cognitive disabilities. And, but it's, it's people make more money just renting their house out to regular renters or even Airbnb. So it'd be the problem becomes even bigger, just because of the cost of living here.
Nathan Shipley  6:44  Yeah, I mean, I recently, I don't know if you want to discuss this more in depth later. But I will say that, even like me, living in my own house is great, like the house I have now is great. Because I have my own, you know, I'm on my parents medical plan, etc. But even like looking for accessible hotels, because I recently started you know, wanting to go away for a couple of weekends here and there. Finding an accessible hotel is great. And everybody, everybody's definition of accessibility is great. Like everybody's - pardon me - everybody's definition of accessibility is great, like, but I'm in a wheelchair. So my definition of accessibility will not work for a blind person. So there's multiple, like... deafness, what works for a blind person definitely won't work with somebody who's deaf or hard of hearing. So that's important.
Evan Kelly  8:00  Yeah, I mean, thing things even like, like a round doorknob can be a challenge for somebody, instead of just like a lever, where you can, you know, use a different part of your arm. It's those kinds of things that I think sometimes the general public just, you know, it's not that they're ignorant, they just don't necessarily think about that. And like something accessible could just be as something as small as opening a door that we just seem to take for granted.
Nathan Shipley  8:26  Right. That is also that's very important.
Evan Kelly  8:30  Now, in terms of technology, tell me a little bit about the technology that helps you make your life better.
Nathan Shipley  8:38  Yeah, so I, I have had you know, I had the Tetra Society, build phone holder, and so that my phone can be on my chair for safety. I have a Google Home. Thanks to the Technology for Living, you know, that Google Home that I actually hook up to Google Nest, so that I can see actually, who comes to my door and so all that, you know, minor things, expensive things. Keep in mind that technology is already always expensive. But all these expensive things, they make a huge difference.
Evan Kelly  9:35  Yeah, like companies like Apple and Microsoft, they're, you know, they're developing apps all the time that become, become assistive and make, you know, independent living possible. Like you say, Google Nest. I mean, iPads are, you know, just changing the world in more ways than just accessing information.
Nathan Shipley  9:55  I mean, like, I have an iPhone and I can only - I have cerebral palsy. And I only have the use of my left hand so I can use, you know, the button to activate in theory. But then it'll be like, text so-and-so. And it will text, it may come up with some unusual words, or some swear words, but it'll work with practice. But it'll work. But the point is that the technology is there. And I would say, you know, it's not just iPhones, computers, etc, but wheelchairs, like I have a power wheelchair, thankfully that technology was generated years ago, but now they have chairs that, you know, you can, you know, smart homes, they'll be able to control your own home, like your whole entire home, you know, thousands of dollars later, but the technology's there, you know?
Evan Kelly  10:58  Yeah, exactly. And it's like, in terms of that technology, it's becomes easier to scale, doesn't it? Like you've got, you've got one sort of program, which has a bunch of code and whatever, but then replicating it again, becomes cheaper, so it becomes even more accessible. But I mean, when you look back 10 years ago, how has technology changed your life? Has that been a big part of it for you?
Nathan Shipley  11:23  Yeah, well, I would say that I was lucky, lucky enough to be born in did be born in the 90s. And I was very fortunate to be born into a world where technology was coming. I mean, back then, there wasn't a lot of technology, but it was coming. It's expensive. It was expensive. But all these things and people don't realize, you know, if you spend a little bit more now, it may be, you know, cheaper in the future.
Evan Kelly  12:02  Yeah, hopefully. When it comes to all the, you know, the technologies and the phone holders and things like that, that you need to get through your life. How, how much of that, are you out of pocket for? How much of that does social programs cover? How much do medical plans cover?
Nathan Shipley  12:20  Yeah, so in terms of the ministry only - though, I got to be very careful what I what I talk about here - in terms of wheelchairs, the ministry will only fund, you know, the bare minimum power chair, so I can get my chair and get around, you know. All the rest of it, would come out, you know, luckily, my parents have a very good medical plan. So, any advice out there will be, you know, make sure you're getting a medical plan. But that's a side note, kind of a joke, but seriously, make sure you find a good medical plan. But the chair I'm sitting in right now, was $16,000 so, the government paid for a little bit, and then my parents medical paid for a little bit, but even that, we still had to pay a little bit out of pocket. I just got a phone that I still had to pay, the ministry covered a little bit. And we still had to pay out of pocket a little bit. So it's a little bit complicated, and I don't really know how much you want me to get into, because I could spend hours teaching you about that.
Evan Kelly  13:50  I'm sure you could. Um, but I guess I guess that's the question. Does BC have room to improve its care for people with disabilities?
Nathan Shipley  14:00  Yeah, well, I mean, what I would say is that BC is one of the more progressive provinces as it comes to people with sorry, repeat so over that against my apologies, BC is when the more progressive provinces as it relates to, you know, treatment of people with disabilities, care, support, etc. But there's always, there's always room to improve. And, you know, there's all this research now, not so much people with physical disability but more seniors, there's more research that indicates to seniors and not too much people's physical disabilities, but also the same thing as they want people with disabilities and with disabilities and especially aging, to be able to age in place, that aging in place essentially means to be able to stay in their home as much as they can. 
Evan Kelly  15:22  Yeah definitely, is that a big concern for you? Like, how does your future look to you?
Nathan Shipley  15:28  Well, I, I will say, going back to the previous question, my apologies. Thankfully, I'm on the CSIL program, which is choice in supports for independent living, the choice in the supports for Independent Living, which is a good program, but I will say, they will only cover medical, like medical needs, aka, you know, going to the washroom, and you know, brushing teeth, and etc. But as you know, and all your listeners will know, and as I know, life isn't always about, you know, showering and all the personal care needs. So, for instance, if I wanted to go swimming, I would need two support workers for safety. But I can't, I can't do that. But swimming is important for my therapies. So I kind of sometimes have to choose, oh, do I have enough funding now to do this? Or do I not, and I'll trim it. We can have a debate about funding, that will be another podcast, that would be another podcast, which we don't have time to do that. We don't have time to do that at the moment. But I would be more than happy to come back and join you again, if you wanted to have a much longer podcast about planning specifics, etc. But that's basically it in a nutshell. But outside of the CSIL funding that because I live in my home, my parents and have to, you know... when my workers leave they take over, which they love doing it, but my mom, she's really good at it, but she is older, and a lot of people with with physical disabilities, their moms end up you know, busting their shoulders, with my mom has a wrecked shoulder, she's got tendinitis, all those things, and migraines and you know, all those things. So that's what I mean is if you, if they provide more funding, which I know is tricky. But it all goes back to what I was saying earlier, is if they provide more now than it would provide more mental and physical wellness, so that it would cause the medical system a lot less in the long run.
Evan Kelly  18:24  Yeah, that makes sense. Well, let's, let's shift the conversation a little bit here. So tell me a little bit about your business around education and public speaking.
Nathan Shipley  18:33  Yeah, so the business Rolling With Nathan you mentioned the website off the top. And so what that is, is I originally, prior to COVID to this was 2019, after getting the business going, I wanted to go into elementary and high schools to educate them about, you know, accessibility and people with physical disabilities, all kinds of you know, disabilities, etc. But then COVID hit. So with the advice of my family and support teams, I then pivoted to speaking to medical students like nursing students, people in healthcare assistant programs, nursing, and Doctors, and thankfully, I've been able to do it virtually so not just in BC but all over Canada. And thankfully all the feedback has been very, very positive. And and they often asked me to come back because what I find and I've worked with, and I still work with, a lot of nursing and medical students when they find a job like working with me very important as they go into the medical field. They say "Oh, you know um," people graduated, they tell me, "Oh, I wish you were around when I was in school." Because the thing that I hear is, a lot of people can learn. Like, you can learn a lot of things by a textbook. But until you hear from somebody who actually receives it, and until you actually do the care of a patient? You know, it's totally different.
Evan Kelly  20:27  Yeah, that definitely would be true. If so, when you when you speak to a group or someone, what are some of the key messages that you want to get across to people?
Nathan Shipley  20:37  That that's a, that's a good question. Basically, what I want to, what I basically want to do is I want to basically, because they talked about my surgeries, my medical treatments, etc. But what I would say is that I talk about my nursing, medical treatments that I basically want to instill, you know, with this kind of empathy, kind of make them realize, you know, how to communicate with people with disabilities, you know, how we can feel pain a little bit differently than other people, because our pain tolerance might be higher, it's a minor thing, but in a medical setting can be very important. I will say, nursing training today is a lot different than it was like a few years ago, even. So even doing that, and the way the schools train now is a lot different. And I can tell you, that a lot of the young nurses that are just graduating now, they're very, they're very enthusiastic and passionate about what they do. You know, the older generation one, there weren't as much education, you know, around disabilities and you know, pain scale. There was a little bit, but all of it provides better education for them, which in turn, provides better care us. I'm sorry that was a long answer.
Evan Kelly  22:22  Long answers are good ones. I'm going to finish with one more little question here, sort of a statement that I thought was really powerful. I can't remember where I read it. It's either on your Facebook page or on your website that you don't feel disabled. Can you speak to that a little bit?
Nathan Shipley  22:41  Right. Yeah, I think what you're referring to is, I don't feel disabled, it's more differently abled. What I mean is that a lot of people nowadays are like, "Oh, poor," well not so much to me now, they think I'm really cool. But the older generation, they haven't seen people with disabilities as much. They used to it being in instituted, like, people with disabilities being instituted, whether physical, cognitive, whatever it is, right. So my theory is that I'm differently abled, yes, I can't walk. But, and I can use my hands, but I have a very, very good, I have, I can use my voice very well. I can, I can do a lot, a lot of things and I told other people, just because I can't walk - I can't walk yes, but like, I can do some things better than, you know, some able bodied people can.
Evan Kelly  23:59  That's very true. Even just you know, having a really good conversation is difficult for some people. But I think that's all the time I'm going to take up. I really, really appreciate talking to you, Nathan. And really, thanks for joining us today.
Nathan Shipley  24:14  Oh, yeah, and just before I go. Just before I go, sorry to cut you off. Something very important that my fabulous support worker has shoved some prawns in my face here, to remind me to, in relation to the housing question, I really encourage people to watch a movie on YouTube called Laura's story, uh, Lauren. Sorry it's not Laura, her name is Lauren, and she, I don't know if some of you listeners might be familiar with unity and harmony and all that stuff, but there's a documentary on a lady named Lauren. And it's basically about a housing project for people with intellectual cognitive, I'm not sure about physical disabilities, but they were basically going to build housing for people with disabilities, while also including able bodied people as well. And that project was denied but that documentary is also really good at illustrating the housing shortage. Sorry my pronounciation isn't the greatest today, but I will say that, for all your listeners, it's on YouTube, it premiered at the inclusion BC conference last week, but that is a really good illustration, you know, how the housing shortage is very important not just for able bodied people but for people of all abilities as well.
Evan Kelly  26:16  And that was called Lauren's story? 
Nathan Shipley  26:18  Yeah, Lauren's story is on YouTube. It's also, if you guys go on to my Facebook page Rolling With Nathan, if you type that in on Facebook and you scroll down there is a YouTube link, you can watch it there. It's only 20 minutes but it's the best documentary I've seen about housing so I highly recommend that as well.
Evan Kelly  26:49  Yeah, that sounds really good. And thanks again to Nathan Shipley. We'll definitely go check out that video. You have been listening to Developmental Disabilities Association's Encouraging Abilities podcast, again our speaker - or our guest today rather, has been Nathan Shipley, a young man with cerebral palsy is a staunch self advocate and public speaker bringing messages of hope and inspiration to the world. Thanks for tuning in.
 

Accessible, Assistive Technology: A Chat With Keegan Newberry Asst. Director at DDA

May 29th to June 4th is National Accessibility Week in Canada. We sat down with Keegan Newberry, DDA's Assistant Director of Assistive Technology, to discuss what's happening in the community and business world to help facilitate accessibility for people with developmental disabilities.
 
TRANSCRIPT:
Evan Kelly  0:05  So welcome to Developmental Disabilities Association's Encouraging Abilities podcast, of course, we're here to tell stories and chat with members of our neurodiverse community I'm your host, Evan Kelly, the Communications Manager here at DDA. Today we are chatting with our very own Keegan Newberry. She is our Assistant Director of Assistive Technology here at DDA, which means she uses a bunch of different things or applications or adapt devices, adaptive devices, rather, to really help our clients communicate, have fun and learn. And one of the reasons she's here today is because it is national accessibility week in Canada. So we're doing a couple of podcasts just based on that. So right off the top Keegan, maybe you could just tell me a little bit about what you do here at DDA.
Keegan Newberry  0:51  Sure. Thanks for the lovely intro. So what I basically do at DDA is I allow our clients to be as independent as possible. And I do that by looking at what they want in their day to day activities, trying to give them the best sort of lived experience by removing barriers. And that often means introducing different technologies to help overcome barriers that we have for them to access the community or to interact with friends.
Evan Kelly  1:24  So what got you interested in this line of work?
Keegan Newberry  1:27  I came from the high school system of years ago as a high school teacher. And I was working with a primary, primarily ESL demographic group. And while I was teaching a social studies class, and writing my exams, like a high school teacher usually does, I came to the realization that with my exam, am I actually testing for their social studies knowledge? Or am I testing for their ability to read English? And that really kind of made me look at what barriers are present in our everyday lives that we don't even consider. And so after finishing my year at teaching, I decided to go into special education. And so I could help individuals with developmental disabilities to sort of specifically target those barriers that are kind of hidden in a lot of things that we do. 
Evan Kelly  2:23  So did you, in terms of your high school teaching, you then launched yourself into, in within a high school, helping people with neurodiversities maybe or?
Keegan Newberry  2:34  I went actually to the elementary system, specifically, because I wanted to work with individuals who had complex needs, I think a lot of the resources that we have available tend to be for people at either ends of the ability spectrum. So for individuals who have complex needs, such as multiple diagnoses, or developmental disability plus a motor impairment or speech impairment, they're... the tools needed for them to overcome these barriers are much more complex; it involves a lot more creative problem solving to get around it. And that's where I really saw my, what I was doing, having a direct impact on the clients I was supporting, and for me, that was the most rewarding,
Evan Kelly  3:26  Fabulous. We're in a, you know, a digital age, of course, and technologies, you know, is getting, you know, making a lot of our lifestyle easier in a lot of ways. And you know, and I see you're working around here at DDA, you know, you're reviewing apps and a whole bunch of other things. How is technology, is it making your job sort of easier, or more creative, or how's that working for you?
Keegan Newberry  3:47  Technology has become more accessible. And because of that, it's being embedded into phones and iPads and other devices as base features, which allows for a lot of the tech that we've been using to be more compatible sort of across the board. That has sort of resulted in lowering costs, which is huge, for some of the accessibility tools that we have out there are thousands of dollars. And those costs have dropped dramatically in the last couple years. I think 10 years ago, eye tracking software was the biggest newest thing. And you'll be talking seven to $10,000 to have it set up for one individual. And now I can go on to the app store and download eye tracking software for free. It's just there. 
Evan Kelly  4:44  It's just a huge leap, isn't it? It's amazing that you can go from this sort of this big concept to, here, it's ready readily available. No problem. 
Keegan Newberry  4:52  And cost is a huge barrier when you're talking thousands of dollars. So I think that's been the biggest change with technology, is being able to work with clients, work with families and say, here's an app, it's not even 99 cents, you can go download it right now.
Evan Kelly  5:09  Yeah, that's amazing. I saw I saw a video just yesterday, you know, it was again talking about accessibility week. And it was this young, young man, or a boy rather who, you know, obviously had had motor skills and or issues and couldn't move his arms or his legs. And they had this eye tracking software, which helped him select musical notes. And he was like playing along with this thing. And, you know, I'm a musician, I know you're a musician. And it's, to see something like that and see that sort of level of inclusivity, where someone who doesn't have the use of their arms and can contribute creatively, it was just absolutely mind blowing. And like you said, like, 99 cents, we can make these things happen. It's unbelievable. 
Keegan Newberry  5:52  It's come even further than that, you have to come out and check out the music section in the AT lab, we had all sorts of fun stuff like that.
Evan Kelly  5:59  That's awesome. Well, we'll get the video on there as well. So the with the technology do I mean, do you find it easier to find solutions to problems or that you might be trying to solve with respect to a client?
Keegan Newberry  6:11  I like to describe the demographic we're supporting as being square pegs in a round hole world. There's not a one size fits all. And unfortunately, a lot of the supports that are out there have been developed with that idea of well we'll create one thing and will work for everyone. If anything, the diversity of new technologies have come out have just sort of made more sizes out there for us to choose from.
Evan Kelly  6:39  And so the next question, I guess, with advances in tech, can you give me an example of where you've seen something like more of a profound impact on a client or a group of people?
Keegan Newberry  6:50  I think, not necessarily an advancement of technology, but an awareness of how assistive tools can help. Not just people with disabilities, but everyone seeing things like fidget tools becoming very normalized. I hate using that word, but very popular in the media. It makes it easier for individuals to access that technology. And because it's not just this really small demographic, who's now using accessibility features on their iPads or needs a fidget device while they're sitting in a classroom. There's more choice out there, and it's easier to get to.
Evan Kelly  7:35  Yeah, that's a good thing. Just hop onto Amazon, if you need something. Now, this, you know, I think you mentioned a little bit about this. But does the tech typically cater to a broad category of disabilities or there's more specific designs that suit specific conditions?
Keegan Newberry  7:50  The tech that's out there right now, there tends to be a lot on either end of the spectrum, there is a ton of technology for individuals, especially on the autism spectrum, who are independent or semi independent in community. There's also a ton of technology for individuals who require significant assistance with their activities of daily living, significant sensory supports for them. The biggest challenge, and that's kind of where I come in with AT, is finding that halfway in between that is, they have a tool that's developmentally appropriate for their needs, but that's also age appropriate for their needs. And we're really lacking that middle ground. And often that means finding things that need to be repurposed or redesigned. Which involves a lot of creativity on my part to find the right modifications to make it right for that client.
Evan Kelly  8:50  Right, you've kind of got to be a bit of an engineer at the same time, I guess. Now, pardon me. COVID, I know like that, that is hurt a lot of technologies and people with their ability to get things like microchips and supply chains have all been cut off. How has that affected your office at this point, in the last couple of years?
Keegan Newberry  9:10  We've lost a ton of our vendors, which has been a lot of the tech that we get in is coming from small companies. And I would say about 50% of our vendors went under with COVID, which is terrible. Some of these, I remember looking for the specific sensory bracelets a couple of weeks ago, and they're not made in Canada anymore. I had to order them in from the UK to get them here. So that's been a huge challenge and some things we can't get in at all. So we end up having to buy things in pieces, and then sort of recreate the different tech kits or tools that we've used in the past in our own lab.
Evan Kelly  9:58  Ironic, it's a bit of a step backward to try and move forward, I guess. But in terms of those small sort of businesses where you're, you know, you're finding specific things, are you finding there's real growth in that area, there's a lot more businesses coming? I think there's a lot more awareness in terms of, certainly in terms of autism, and, you know, other developmental disabilities and people are, you know, inclusion of course is a driving force for DDA, it's a driving force for this community. Are you seeing a lot more small businesses and people coming up with ideas and people coming up with things and, and creating, you know, things that we can purchase to help? Is there, is that a real growth industry do you think?
Keegan Newberry  10:38  There definitely is growth in that industry. I would say that about 60% of all of the tools that I currently have out, that clients are using, were not actually developed to be used for people with disabilities. They were assistive tools that were developed for neurotypical individuals that... I was on the internet one day sort of trolling around different websites, and looked at that and said, "Hmm, you think you've created this, but what you have actually created is this really cool assistive tool." And so we're often repurposing it.
Evan Kelly  11:19  Yeah, I look at the like things like fidgets spinners, you know, that to me, they were very popular with with my kids, when they sort of first came out and popular with a lot of people. But it wasn't, I don't think they were necessarily designed with people with autism in mind. You know, even though that became something that people could focus on and sort of have fun with. So is, to me, that was a primary example of that.
Keegan Newberry  11:47  Well you think about, they weren't, they were designed, yes, as a toy, or as a fidget. But the skills that are actually required to use a fidget spinner requires the fine motor control, to have that pinch point to hold the center, the gross motor control to be able to spin it, have an understanding of cause and effect. What happens if I hit my hand against this? And then, because it's a toy, it has this built in reward system. So really, it's a teaching tool for a lot of individuals that we can use. And that's where we're finding a lot of the different AT that we're actually using is people not realizing what they've created yet and how it can be used.
Evan Kelly  12:34  Yeah, that's amazing that you, you've just, you just hit on like a few different points where, you know, from my office, I might not even think about it like that, to me, it's this funky thing that spins, it feels like sort of gyroscopic and, you know, slightly entertaining, because I'm a very fidgety person I can sit in with a fidget spinner while I do something else. But then to look at it as this learning tool and this cause and effect thing is really quite fascinating. What about upcoming technologies that you're eager to get your hands on anything on the horizon that looks cool?
Keegan Newberry  13:05  Brain computer interface, 100%. In the last couple of years, there has been some really incredible things that have been able to be done, especially they were originally designed to support people with Locked In syndrome. So we can process literally what their brains are doing, what different neurons are firing in their head, and convert that to text, convert that to speech through a computer. And there are a lot of different companies who are working on it in a very prototype sort of type level right now. But when we're thinking about, especially about assistive communication, a lot of our individuals have shown that if we give them the right tools, they might be technically nonverbal, but if we give them a way to communicate, whether it's through pointing at picture symbols using an iPad, using sign language, that they have the desire to communicate, which means that the more tools that we have, that basically removes the stress on the actual client to have to learn that tool, the more they'll be able to communicate with their friends, their family, their community, and the more independent they're going to be able to be.
Evan Kelly  14:26  That would be amazing. I think it's, you know, people like Elon Musk are working on these kinds of interfaces. I don't know what any other companies that are doing it, you might know that but that to be able to communicate with people who are nonverbal or, I mean, it goes beyond developmental disabilities, people with injuries or brain injuries or who may be in a vegetative state, but could still communicate would be unbelievable, unlocking worlds. 
Keegan Newberry  14:49  Exactly and that's where a lot of these technologies have been developed out of. And this is me, again, sitting on the internet being like, ooh, two years from now. I can totally use this.
Evan Kelly  15:02  Exactly. So I mean, what are some of the bigger companies that are that are doing stuff? I mean, we're seeing a lot of companies, like I look at a lot of stories like the latest one from Reebok, you know, people bringing in assistive footwear or more accessible footwear for people, what are some of the bigger companies that you're seeing developing stuff when it comes to inclusion?
Keegan Newberry  15:28  Apple has definitely been in there the last couple of years, not as much with their own development, but working towards making their devices more compatible with different assistive tools, which has been a huge change from even five years ago. We have Logitech in there, Microsoft, Microsoft released a really cool app actually called seeing AI a few months ago, I think it would have been now, that literally, you can take a picture of a room, and it'll process it and tell you what is probably in that picture. So people with visual impairments, they can have their environment described for themselves, just by using a free iPad app. There are smaller companies that are continuing to produce technology. Go Talk is sort of one of the big names that we see and have seen for over 10 years. And then Proloquo2go TouchChat, they develop AC, so assistive communication apps, they're still there lingering in the background, and they still have great tools. But definitely seeing bigger things coming out of Microsoft and Apple in the last couple of years that have really shown promise and have really sort of taken that big step forward, especially in the mainstream.
Evan Kelly  16:55  Yeah, it's really the digital realm that sort of really seems to be pushing this envelope. But what areas of disability care would you like to see more development of tech? I mean, it's, it's one thing to get the apps and it really helps with communication, but is there something else, there's another area of disability that we need to, would like to see more focus on?
Keegan Newberry  17:17  Community access tools, I think a lot of people don't realize how many barriers that can be. When I used to teach about barriers in community I used to have my students walk through a building and see if they could find all the different barriers, things like round doorknobs, if you have a gross motor impairment, they're extremely hard to turn. You might have a ramp, which is fantastic, almost all of our buildings are accessible now with ramps. But if you're a wheelchair user, and that is a very steep ramp, it's really challenging to push yourself up some of them, like I get winded walking up some of these ramps. Even other things like having communication systems, there's some amazing communication systems they're developing, where video can read American Sign Language, which is, there's such a big community that uses ASL to communicate. But it's so closed off for a certain aspect. So finding tools that you could walk into a coffee shop and be able to sign on a camera and it would translate for you would be incredible. So all of those like little barriers that really are big things that need to be overcome for a lot of our clients to be truly independent in community.
Evan Kelly  18:52  Now, I've seen a couple of other things, I know some people in the disability community are developing apps themselves, like map apps, to map out what is, what parts of your community are accessible, what parks are really accessible. So I see that growing quite a bit. I've seen quite a few of those things, but it's one of those things like how do you, particularly here in Canada when we get snow and and the thing is when it comes to accessibility, people, even like myself, would take for granted that, you know, where there's a layer of snow that can be deadly for someone who's got limited mobility, because you can't see what's under it. Like if there was some way besides, you know, getting people to constantly clear their driveway. Is there some way to sort of, I don't know, find out what's underneath the snow and some sort of radar, who knows, but it's that, that to me was one of the biggest things I've noticed in the past year that a lot of people just don't seem to understand that even just a light layer of snow becomes a really impassable thing for people particularly in a wheelchair.
Keegan Newberry  19:53  And that's the importance of community awareness, more than once I've been out and crushed gravel driveways that have not been packed down, I've definitely gotten a wheelchair stuck in those before. But the more awareness we can bring to those kinds of barriers, hopefully, the more people will do to reduce them in our community. It's not something that we can just put in a single law or bylaw in and they're all going to magically go away. This is something that needs to become common knowledge across members of our community. So they're each doing their part to make sure that their small little piece of their community is as accessible as possible. So the greater community can be accessed by people with disabilities.
Evan Kelly  20:42  Now, is there some way that I mean, you sort of look at this stuff daily, of course, is there some way that people can stay up to date on the latest assistive technology? Or is there like a sort of a receptacle website with all different things updated? Or how do people find out about assistive technology in general?
Keegan Newberry  21:03  Probably one of the best websites is RESNA. So that's the Rehabilitation Engineering and assistive technology Society of North America. Their website is fantastic with new updates, they have forums to chat about different assistive technology ideas. And that is sort of one of the ones that I use, that is truly dedicated to assistive technology. Other ones wired.com, they have some incredible stuff on there. But again, it's things that aren't traditionally assistive technology, that people just have not realized what they created. I'd say I've found a good number of stuff actually on Kickstarter. There's lots of really good ideas out there that just need someone to sort of look at them from a different perspective to realize how impactful they could possibly be on this demographic we're supporting.
Evan Kelly  21:59  Exactly. Now, in terms of, you know, funding for things like Kickstarter, Kickstarter obviously, you're looking for sort of crowdsourcing. But is the government like of British Columbia, the federal government, even municipal governments, do they offer funding for projects such as these? Do you see, do you see them getting involved enough? Or are they, are they okay?
Keegan Newberry  22:19  It's... the funding is extremely limited, unfortunately. When you look at it, it's just a very small fraction of our population, if you're just talking numbers. So the funding is going to the greatest good, unfortunately, a lot of the stuff that we're seeing, where tech is coming out of is out of universities who have been able to get funding for special research projects. In fact, that's where some of the really cool brain computer interface technology is coming out of. So we're looking more down the academic road, then really down the government funding road to see where that new tech is coming from.
Evan Kelly  23:05  Right. Okay, um, do you have anything else to add to this? I mean, we've been covering a lot of things. Anything else you want to discuss in terms of assistive technology, what we're doing here at DDA, we've got, you can certainly come to our website develop.bc.ca, where Keegan puts together a lot of tech reviews, assistive tech reviews, it's on our Star newsletter and the like, on the website. 
Keegan Newberry  23:30  I'd say the biggest misconception about assistive technology is everyone thinks it's all about the iPads. A very small fraction of what we do is about iPads. It's the really little things from finding a spoon that counter interacts tremors for someone who has Parkinson's, finding special grips that can go on doorknobs, to make them easier to open. There's a lot of really creative problem solving that happens on the small scale. And it's those things that are making the biggest difference beyond iPads and the sort of high tech stuff that we're seeing out there.
Evan Kelly  24:14  So don't just rely on the digital realm. It's there's a lot more to it. Well, thank you very much, Keegan. This has been DDA's Encouraging Abilities podcast, our guest has been Keegan Newberry, our Assistant Director of Assistive Technology here at DDA. Thanks for joining us today. Alright, I'll see you all soon.
 

DDA talks to Autistic Self-Advocate Margaux Wosk

Margaux Wosk is an Autistic person and a staunch self-advocate who runs their own business.
 
TRANSCRIPT:
Evan Kelly  0:06  Welcome to Developmental Disabilities Association's Encouraging Abilities podcast. We're here to chat with members of our neurodiverse community. I'm your host, Evan Kelly. Whether it's talking about new government policies or new business ventures or amazing achievements, you'll find it here. Our guest today is Margaux Wosk. Margaux is a self advocate in the Autistic community, who is an entrepreneur and runs their own, I guess mostly online business with custom made pins, necklaces, buttons, stickers, and more. Under the name Retrophiliac. Check. Welcome to the podcast Margaux.
Margaux Wosk  0:40  Hi, thank you for having me.
Evan Kelly  0:41  My pleasure. For sure. Now, right off the top: why the name Retrophiliac?
Margaux Wosk  0:48  Sure. So I've had this name as my pseudonym for my art for over 11 years, I have a strong love of retro and vintage things. And it basically means a lover of past things. So I'm really into 1960s and 70s. Music, some television shows, the colors, the art, that kind of thing.
Evan Kelly  1:12  Yeah, there's a lot a lot of great stuff from those periods, of course. For where you live, do you hunt around for retro furniture and things like that?
Margaux Wosk  1:22  I used to a lot more, my style is kind of evolved a little bit. But I definitely am inspired by, in terms of, you know, seeing art, going to different thrift shops and stuff like that.
Evan Kelly  1:37  Nice. So, right. And you know, just diving into it your business, what inspired you to get into business for yourself?
Margaux Wosk  1:46  Honestly, it was out of necessity. I didn't really have a choice. So I was able to fund my first design with the BC Arts Council grant. And from there, I've been able to extend all my offerings. I cannot work for somebody else. No matter how accessible workplaces are made, they're not going to ever be 100% accessible for all people. So I am fortunate enough that I'm in a position where I can mostly support myself and work out of my own home.
Evan Kelly  2:21  That's awesome. Now, do you do all of this? I checked out your website and you've got a lot of really cool looking stuff. Do you do all of the designing yourself?
Margaux Wosk  2:30  So what I do is I draw things out either physically or digitally, I do the best I can to get it to the right place. And then what I'll do is I'll usually hire somebody who's fluent in Photoshop or Illustrator, and then they'll go ahead and kind of perfect my images and get them in the right format. So then I can send them off to my manufacturers.
Evan Kelly  2:55  And how long you've been doing this?
Margaux Wosk  2:59  Oh my gosh. Well, I've had my online store, at least I've done my enamel pins for probably, I want to say, around four or five years, but I've been making art for my entire life. And I've been Retrophiliac for over 10 years.
Evan Kelly  3:14  Wow, that's a good, that's a good stretch. Now Margaux is also a dynamo on social media. If you haven't seen it, they're easily find findable on all the main channels, Facebook, Twitter, Instagram, Tik Tok, there's a shop on Etsy, you name it. So how much time do you spend on this part of your marketing for the business on the online marketing?
Margaux Wosk  3:36  I interact with people as much as I can, I don't really have much of a social life, to be honest outside of the internet outside of, you know, my cat and my immediate family. So it's not even necessarily all about marketing. It's really about forming strong connections and kind of, you know, reducing the stigma of what autistic people or people with developmental disabilities, or neurodivergent people, are capable of. And if I'm able to do that, through my advocacy, and my designs and all the different things that I do, then, you know, that makes all those individual interactions so worth it.
Evan Kelly  4:16  Yeah, absolutely. I mean, that that really sounds like you're using social media was what it was ultimately designed for was to make connections and not necessarily just sell stuff. I mean, that that, to me is sort of an offshoot of social media, but but to really build those connections and help spread some awareness. So good for you.
Margaux Wosk  4:34  Yeah, thank you so much. It definitely has been a wonderful platform. And I'm thankful that we're in this day and age where we can share information and photos and videos so freely.
Evan Kelly  4:45  Absolutely. Now on top of that, do you do go to any, like, farmers markets or do you have your product in stores as well?
Margaux Wosk  4:52  So my product is in around I think 12 stores and a handful of them are local. I have some retailers, I have one in Invermere, I have a few in the States. I'm at Make, I think there's a location on Granville Island and they have another location, I'm at Baby Nook or local milk in New West. I'm also at Slice of Life on venables and commercial. And there's probably a few more that I'm forgetting. Okay, Catoro Cafe has some of my cat designs. So definitely, there's the retail channels. And then in terms of farmer's markets, I will be doing the next Made in the 604, which I think is in June or July, at Heritage Hall with my sister, we're actually going to share a table. So that's really cool. So I definitely want to get out and start doing more events. But a lot of the time there is too large of a financial barrier for me to get a table. So I really have to figure out what's gonna work for me.
Evan Kelly  5:55  Wow, it sounds like you're... How do you keep track of all that? Who do you just keep track of all the stores and stuff that you're in by yourself? Is this the one person show?
Margaux Wosk  6:05  Yeah, it's pretty much just me. Occasionally, my niece will come over and help me put pins on the business cards that I get for them for getting them ready to be packaged for shops. But other than that, I pretty much do it all alone, if I need to ship some stuff. And I have too much to walk to the mailbox, you know, my mom will occasionally take me to the post office. But for the most part, I would say I do 98% of everything.
Evan Kelly  6:29  Well, it's pretty inspiring. So how many hours a week are you putting in right now in this business?
Margaux Wosk  6:34  I have no idea. So I pack orders, like, periodically throughout the day when I get them. You know, there'll be some days that are a lot slower than others. But it's kind of just part of my life. I don't even really track it. You know, I'll sit on the couch with my computer and answer emails or talk to my manufacturers and it's just, it's just part of my livelihood. It really gives me a purpose. So I don't know. I don't even track the time. It's just, it just is my life. 
Evan Kelly  7:04  It's just who you are. I know a lot of your, of course a lot of your designs being you know, identifying as an autistic person yourself. A lot of your designs focus on autism, autism awareness, is that the main message you want people to hear?
Margaux Wosk  7:23  So I prefer acceptance over awareness. I think that my items really speak to different people, because I have such a variety. You know, I have the neurodiversity pride items, and neurodiversity, and being neurodivergent encompasses so many different things. And then I do have my autism related items. But then I also have really fun items. And really the message is for people to be proud of who they are to be able to celebrate it. And to be able to support an autistic person as part of their, their journey of being comfortable with self expression. There's so many companies and so many individuals that share very harmful images, and create shirts or items that harm us and that none of the money goes to an autistic person. So it was really important to me to not only lead by example, but I run Made by Autistics Community and Made by Autistics Marketplace on Facebook. And I'm able to really share my knowledge and give people the opportunity to sell and showcase their work because it's not just about me, but it's really about reducing that stigma.
Evan Kelly  8:35  Yeah, absolutely. It's, and you're painting. I was just actually on your Facebook page and your your painting is so good. Is that is that sort of where it started for you and just into the creative process?
Margaux Wosk  8:47  Yeah, so I picked up a canvas one day and I only had watercolors and I made some full string. I painted and then I kind of haven't stopped. Right now I'm going through a bit of a creative block, but painting was definitely where it started. But when I was a child, like 12, 13 years old, I was buying and reselling vintage on eBay. So I mean, I have built in, I guess internet marketing business skill that I've always had. So I finally was able to figure out a way to turn my art into designs, and then turn those designs into tangible products. So I'm kind of honing in on all these different skills and I've been able to kind of put them together and do something with it.
Evan Kelly  9:34  Which is absolutely amazing. I went through your Etsy shop and you're getting tons of rave reviews for your work. How does that make you feel?
Margaux Wosk  9:44  It's great. I really strive for customer satisfaction. I want all my customers to be happy. So you know if I see a bad review, I'll usually like reach out to the customer see what's wrong, see if I can fix something I've been able to really make people happy. And if something's wrong, I'm quick to fix it. And it's just important to me to maintain that five star rating and just to provide quality products to people.
Evan Kelly  10:15  Yeah, absolutely. Sometimes in business, they, you know, they say it's not what you're selling, it's your customer relations that really, really drive your business.
Margaux Wosk  10:25  Yep, it's, I would say it's definitely both. It's a combination of both. And I think if you're able to balance that, and ensure that you're really dedicated and committed to what you're selling, and you believe in it, and you believe that your customers will like it, and will be happy with it, then I think that's really like the secret to success.
Evan Kelly  10:42  Yeah, that's great. Now, in terms of what you are selling, I mean, you got lots of pins and badges and stickers, and that kind of thing. Are you? Do you see yourself in the future expanding your product depth?
Margaux Wosk  10:54  Oh, yeah, there's a lot of other things that I would really like to get made. But it's definitely a weighing the pros and cons of that, because I am maintaining pretty much all my stock in my apartment. So I have to think, what do I have room for, what's going to ship out well, and what has good margins for me honestly, and pins are great, because they don't take up a whole lot of room. So I would love to do things like screen printed tote bags with some of my designs and, and little pouches for people to put their fidget toys in or their medication or their makeup in. But, you know, it's all in due time, those things definitely have a higher overall cost. So I just have to figure out how I want to reinvest my money, and how far, and I think about what is actually going to be a smart investment.
Evan Kelly  11:52  Yeah, exactly. So what do you find is the hardest thing about being self employed?
Margaux Wosk  11:58  That we don't really matter. Honestly, as you may know, September is BC Disability Employment month, I'm sure you've heard of that. And any of the organizations that have been involved with this, don't really care about self employed people. And it's really upsetting. Like the press release for BC Disability Employment Month, was very upsetting, they didn't even speak to a single disabled person. And they only spoke to organizations that hire us. And I have my own set of problems with that, that I'm not going to get into right now. But I just think people don't think we exist. And to a lot of organizations, there's really no benefit for a disabled person to be self employed, because we cannot make them money in any way. They cannot use our identity to market to people. So it's been frustrating, I actually got so upset that I called the communication specialist for the provincial government. And they may be reaching out to me in August to talk to me, to amend, to create a new press release. So that self employed disabled people are actually included in that conversation, because I firmly believe that having us excluded means that we're never going to get any kind of grant funding, or proper programs in place so that other people can have this opportunity.
Evan Kelly  13:23  Yeah, absolutely. You need to have that voice there. So I guess, for this question, do you feel there hasn't been enough support in your life to make this kind of a living?
Margaux Wosk  13:36  Absolutely. And I've heard from other people in the same position that they're like, you know, I really want to work for myself, because I cannot work outside of my home. And I can't, because I don't have any startup funds. And it's sad, because some of the programs that exist out there actively encourage us to take on loans. And I think it's really offensive to expect somebody who is disabled to take on debt. Meanwhile, there was a, I believe, $4.5 million grant given by the government, provincial government or federal, I can't remember, for employment for disabled people. And some of the organizations I spoke to actually let me know that they're not allowed to allocate any of those funds for self employed disabled people. Meanwhile, some of the organizations that are getting that money already have billions of dollars between them. So there's a big inequity going on right now.
Evan Kelly  14:30  Sounds like there's a very, very big gap. So what sort of what sort of resources would you like to see in place in order to build your business?
Margaux Wosk  14:39  So it's not only necessarily for my business, but for anybody else. I think that there needs to be grants. I think that there needs to be better mentorship programs. I feel like the programs that exist need to have much less barriers. I think one of the programs that exists, actually expects you to not be in business so that when you take the course, you work on a business plan with them. So for anybody that has a pre existing business or may not qualify for that program, there's really not much out there. I needed help with certain financial things like taxes, understanding duties and imports, PST, income tax, but I have nobody to call on, we need those resources, we also need some subsidies to be able to hire help. Like I would love to be able to hire somebody for like four hours a week and have the government pay for that. I mean they're doing it for really big organizations that can pay for it themselves, but individuals get nothing. I have a friend in Burnaby, who runs their own jewelry shop, and they're chronically ill, and there's no help or support for them either. They would love to subsidize a worker, they would love to have somebody to call on when they have questions. But there's nothing.
Evan Kelly  15:55  No, obviously, before you started your business, as someone with autism, tell me about your experience in the job world? What are some of the hurdles you faced, and were you successful? Or is it just really, really difficult for you to maintain a job outside of what you're doing.
Margaux Wosk  16:12  So I think being autistic definitely has led to a lot of barriers for me in terms of my sensory processing difficulties. So I have worked a number of jobs, pretty much all retail, I did some background or extra work in film as well, which wasn't always great, because the environments would constantly change the lighting would sometimes be bad, the ventilation would be bad. And I found that in some retail environments, I got very overwhelmed by the fluorescent lighting, and by some of the smells, and sometimes just being very burnt out from how many social interactions I had to have. And a lot of the time, I felt like these jobs, and these employers didn't see me as a person, they saw me as a number or just not a living and breathing entity. So for me, I just got very depressed and very burnt out. And I just, I was just like, enough is enough, I can't do this anymore. So you know, like I say, as so many of these employers say that they work to achieve accessibility. But many, many times, they're only thinking of physical accessibility, not necessarily mental or like cognitive disabilities and accessibility. So you know, as you can think most places have fluorescent lighting, and I can't be around that. I'm currently in my apartment and all the lights are off. And I have natural light coming in from outside.
Evan Kelly  17:45  Now, do you feel that society is changing for the better when it comes to meeting the needs of the neurodiverse community?
Margaux Wosk  17:52  I'm a little bit mixed on that. Some things, some places, some organizations are probably doing the best they can. But some organizations, are all talk, they say they're going to do these things, they say they're going to invest in these things, and they don't. So I think it's entirely or at least, it's up to us, as neurodivergent people to hold these companies and these organizations accountable. Because many of them, and not to sound ableist, but many of them do not believe that we have the mental capacity to speak for ourselves, or to provide feedback. So they kind of do what they think is expected of them. And a lot of the time, I think it's more for how their business looks to customers, versus how it actually impacts and positively affects their employees.
Evan Kelly  18:47  Right. Yeah, you might be right about that. But businesses aside, what about community in general? How are you feeling these days in 2022, in terms of acceptance for the neurodiverse community?
Margaux Wosk  18:58  I think it's getting better. But I still think that there's a lot to talk about, and a lot of stigma to still reduce and a lot of people that, you know, if I say I'm disabled, I still get a lot of flack for that. And it shouldn't be that way, because I believe that neurodivergent people have so much to offer. And we have so much to add to the world, that I really wish people as a whole could start seeing us, as you know, members of society who are worthy of equality, essentially. 
Evan Kelly  19:40  Yeah, and that you have something to contribute and you've got tons and tons of potential.
Margaux Wosk  19:46  Exactly. And I mean, I don't think we should necessarily be singled out in terms of what neurotypical people have to offer, but I just think we could be better respected and accommodated.
Evan Kelly  19:58  So switching gears a little bit now you're now the Regional Director for lower mainland West for BC people first That sounds amazing. How did you get involved with this group?
Margaux Wosk  20:08  So originally a few years ago, they had reached out to me, they wanted me to speak on a panel. And I really enjoyed it. And from there, I just kept, I decided to become a member. And I kept getting involved, and I kept speaking with them. I spoke at the International Day of disability at the art gallery in December, which was amazing to do that in person, I love public speaking. So I just kept being involved. And I really have a dream to be on a board one day. And I love the fact that I get to represent people in this region. And having this title makes me seem a lot more legitimate, because unfortunately, people don't necessarily take us seriously without a title, which is upsetting. But I'm thankful to be part of a really cool, nonprofit organization. And I'm going to be presenting with them at the inclusion BC Everybody Belongs conference. So I'm very excited for that. 
Evan Kelly  21:07  Yeah, that sounds awesome. Now, obviously, self advocacy is extremely important to you, like you said, you're going to be speaking at this conference. And your topic you mentioned is how to be a better self advocate. Can you talk a little bit about that? And what self advocacy means to you? And how do people get better at it?
Margaux Wosk  21:24  Sure. So self advocacy means for me is standing up. Self advocacy for me means standing up for yourself and advocating for your needs, and being comfortable enough to speak up about it in whatever capacity that you're able to. And so our presentation is going to really focus on identifying what you're advocating for, and then honing in on different ways of doing that. So whether it's petitions, media coverage, joining organizations, that kind of thing, we're just we're going to - me and two other presenters from the organization are going to lead the participants of the workshop through all those different steps. And hopefully give them the tools or the resources that they need to improve their self advocacy.
Evan Kelly  22:18  That's great. We're sort of running, running out of time on this now, is there anything else you'd like to add? Or that you feel your audience should know about you?
Margaux Wosk  22:28  Just that if anybody wants to interact with me that they're more than welcome to and that I'm always, you know, looking for more places to get the word out. So, yeah, if anybody wants to check out my social media, that would be wonderful. And, you know, I'm just happy to be part of the community and to use my voice to help others as well as myself.
Evan Kelly  22:56  Yeah. And you're just you you're doing a fabulous job, Margaux. They'd like the the art, the quality of the work that you're doing is, is absolutely next level and there's there's no reason why people wouldn't want this up. I love your painting. It's absolutely fabulous. Margaux, thank you so much for joining us today.
Margaux Wosk  23:14  You're very welcome. Thank you for having me.
Evan Kelly  23:16  You have been listening to the DDA encouraging abilities podcast. Our guest today was Margaux Wosk, owner and operator of Retrophiliac, an online and social media store where they design pins and badges with messages of self advocacy and autism awareness. You can find the store at shopretrophiliac.com. They are doing a fantastic job with this. Margaux, thank you again for joining us today. And thanks for tuning in for DDA's Encouraging Abilities podcast. I'm Evan Kelly.
 

DDA speaks with Krystian Shaw, publisher of the Kamloops Self Advocate

Krystian Shaw was never expected to read or write. With dogged determination and a steel resolve, he is now the publisher of a 12-page newsletter he distributes in Kamloops B.C.
 
TRANSCRIPT:
Evan Kelly  0:03  Welcome to DDA's encouraging abilities podcast. I'm Evan Kelly. And our goal is to make our stories more accessible to enlighten people as to who we are, what we do and why. We also want to help others in the disability community tell their stories. Whether it's talking about new government policy, new business ventures or amazing achievements, you'll find it here. Our topics will focus on the developmental disability community, their caregivers, family members, we will talk to self advocates, experts in the field and members of the government, and even our own staff who are doing great things through adaptive technology, advocacy, support, and much more. Our guest today is Krystian Shaw and his mom Linda. Now Krystian is a very well known self advocate who lives in Kamloops, Krystian had dreams of being a professional in the field of media. And through determination and hard work, he developed the Kamloops self advocate, putting Kamloops on the map newsletter that now reaches far beyond the BC borders. Thanks for joining us. Kicking it off right now like Krystian, why did you start this newsletter in the first place,
Krystian Shaw  1:08  Because I wanted to work in the disability field. Because people gave me a lot of support when I was younger, and during my adulthood. And I wanted to return the favour and support people with diverse abilities, just like I was supported when I was younger. But I couldn't go to university to get a college degree. Because I have some challenges of my own.
Evan Kelly  1:46  Now I just pulled out your latest addition here, Krystian, it's really good. It's got lots of information, 12 pages long. You've got Krystian's corner, where you talk about some of your thoughts and feelings on things. You've got poetry, there's recipes, there's interviews, you're covering a lot of stuff. Now, Linda, you were told when he was born, the doctor said basically that he would not be able to read and write. Now he's publishing his own newsletter. Can you speak a little bit to this?
Linda  2:17  Yeah, when he was born, he was premature. And he was five months old before he came home for the first time from the hospital. And he was still on oxygen when he came home. And they said that the chances of him reading or writing was slim to none. And they even told the schools not to bother teaching him to read. And that he couldn't retain it. And he couldn't retain phonics and things like that. So no one, none of the teachers would teach him. So I would try to teach him and yeah, he wouldn't retain it, but we kept it up and kept it up. Finally, in grade six, a teacher decided to go against what they had said in the reports, and went and got him some books from Costco on long vowel sounds and short vowel sounds, and taught him how to read and surprised all he she did it with all the class and surprised all the mothers at the end of the year for them to come for, you know, a teacher conference or whatever and, and students were the students were, and they read to us for the first time, which was really shocking. And then Krystian's had a computer ever since he was seven years old. And people were shocked at how he could get through and navigate the computer even though he couldn't read. They didn't believe me when I said he couldn't read because he was so good at it. And I thought, well, that's how, you know, ones that are illiterate, they can fool people because they do it through signs and through, you know, symbols and things like that. And so then, after that, he, when he started to read he wanted to go to university to at least take a life skills course, I mean Work Experience course. And but they said he had to read and write in order to do it. And so he got on the computer and he started teaching himself after he'd learned the basics. And by grade nine or 10, or whatever, he was really good at reading. And by the time he got out of school, he was a fluent reader and writer and, and speller. And so then he went to university to do the life skills course for three years. And he took retail then, but he didn't really like retail. And that's when he said, you know, Mom, I want to do something that I can do with my, to help other people that are special needs too that's what I really want. And so then somebody suggested to him to start a newsletter. And so he started asking around about it. And he ended up going to New Horizons and asked Justine Richmond, if you know about it, and she said, You know, I can help you to do that, and if that's what you really want to do. And so the rest is history. I mean, they got him involved in all the right people. And, and it just hit off.
Evan Kelly  5:53  So Krystian, how long have you been producing your newsletter?
Krystian Shaw  5:56  Since September of 2013.
Evan Kelly  6:00  Oh, so it's for years now. Now, is it something that is growing? Did you start out at one page and build it up to the 12 that it is now?
Linda  6:09  Started out at four pages, and now it's what, eight to 12.
Evan Kelly  6:14  Eight, eight pages is offline, eight pages online, it doesn't matter online. Any amount you want online, except in print in print is eight. Online is 12. Online.
Linda  6:35  They get a little bit more info online.
Evan Kelly  6:40  Well, that sounds really good. Now Krystian, what are some of the things you like to write about?
Krystian Shaw  6:46  I have interviewed the campaign, from Holland Bloorview Kids Rehabilitation Hospital, they did an interview with me because they have a campaign and to deal with people with disabilities and medical complexity and other kinds of disabilities. And they have a campaign called Dear Everybody and they talk about ableism. And this year, they're focusing on ableism. And they do workshops for people outside of Toronto, for example, online. If they're not in their area, they do it online instead. And I asked Justine to inquire about it for Kamloops for for her program stuff. Because I wants to take the workshop, and learn more.
Evan Kelly  7:57  So you'd like to give back you'd like to talk a lot about what's going on in the disability community. I noticed your newsletter talks a lot about music, too. Are you a big music fan?
Krystian Shaw  8:08  Yeah. And I wanted to make this newsletter appeal to everyone, not just people with diverse abilities. I wanted to make this newsletter appeal to everyone. Such as caregivers, support workers, family members, people in the community, not just disability awareness to cover all different topics.
Evan Kelly  8:42  It sounds like you're doing a really great job covering all these topics. Do you have a favorite style of music you like to listen to?
Krystian Shaw  8:50  I like pop too.
Evan Kelly  8:52  Putting something like this together is not an easy task, Krystian. So how did you learn to do all this stuff? I mean, there's formatting involved, there's taking pictures, there's uploading things, there's editing all these pieces together. It's quite a process.
Krystian Shaw  9:06  Justine from the New Horizons, professional support services. And the community companion program who she works for she taught me ever since I started how to do it. And she, and before it's taken up 10 hours of her personal life to do it with because she doesn't get paid for my newsletter. So she did it for 10 hours and then it was getting too much for her too much. Then see taught me how to do it on my own. And now she only edits.
Evan Kelly  9:19  So how long does it take you to put one of the editions together?
Krystian Shaw  10:02  Um, two weeks, about two weeks. I start on the beginning of the month until the 15th.
Evan Kelly  10:12  That sounds like a lot of work. So Krystian, how does it feel when you're finished an edition, tell me about that.
Krystian Shaw  10:19  Good. And I also share it on a safe, fairly safe website called Ability online and self advocate net, ability online. It's a website for kids, youth, adults, parents, professionals, and it gives support to each other and they have different sections of the website for for different age groups and different people.
Evan Kelly  10:58  Well, that sounds great. So once it's printed, where do you distribute your newsletter to?
Krystian Shaw  11:05  To coffee shops, to service providers, to food places online, and stuff like that.
Evan Kelly  11:19  So tell me what happens once once you've got it printed you just put on your running shoes and head out the door and distributed yourself.
Krystian Shaw  11:26  Nope, with support of course, with support.
Linda  11:29  He gets a ride in a car and they they drive him and he runs out and delivers them. It's all over Kamloops. Like it's everywhere. There's at least 20 or 30 places anyway.
Krystian Shaw  11:47  I deliver to different areas in town such as the North Shore, downtown, and uptown in Sahali. Even to my apartment building.
Linda  11:50  Yeah, because they enjoy the newsletter.
Evan Kelly  12:07  Yeah, of course they do, we out here in Vancouver don't get it, we'll have to rely on the online version. Now Krystian you generate, you put ads on your paper and so does this generate income for you?
Krystian Shaw  12:18  Yep. And they give me honorariums. I give myself, an honorarium. I give other contributors an honorarium, and I have enough money to pay honorariums now, when I first started - and expenses - when I first started it was hard to pay people. I pay people every three months as funds allow and funds are allowed now because I make enough.
Evan Kelly  13:00  Well, you have a legitimate business running there Krystian. Now just to change the topic a little bit and going a little deeper, why is being a self advocate so important to you?
Krystian Shaw  13:12  Because you can help people.
Linda  13:17  Krystian has always wanted to right the wrong ever since he was little. If he thought something was wrong, he was a go getter and a fighter wanting to make change. He's always been that way. So he's just constantly wanting to right the wrongs.
Evan Kelly  13:38  That's very noble Krystian and obviously very, very inspiring, inspiring to a lot of people. Did you do anything for Pink Shirt Day this year?
Krystian Shaw  13:46  Yep, articles.
Linda  13:49  You had a group on Zoom, where you all wore your, you all wore your T-shirts, and your, your pink shirts.
Krystian Shaw  14:01  Yeah, with Justine's program, they were holding an event online that people can wear their pink shirts. And they did videos from YouTube with different countries and talked a little bit about what their country does, and stuff like that and what their culture is like, as well as they celebrate Pink Shirt Day too, but in different months.
Evan Kelly  14:37  Now the COVID pandemic has been difficult on the disability community, we know this. So how have you two been able to cope, you know, for the last couple of years?
I was very good because before COVID got a little bit better and more better. It was only online. But now it's offline again. Now it's offline again.
Linda  15:06  We've had it a little tough though, because Krystian got COVID. March the 2020, like right after the shutdown, within a couple of weeks, he got COVID. And he's in the hospital for a week. But it wasn't, it wasn't really bad. He didn't have to be in intensive care anything. And then this January, at the end of the month, I got COVID and I've had three shots. So it's, it's serious, but we tried to like, it's easier for Krystian because he's a homebody anyway. So he likes to stay at home and just do his newsletter and, and talk on the phone or, or go on Zoom or whatever. So that's pretty easy. And I'm the same way, I like to be be home too. So it's, it didn't you know, neither one of us got cabin fever or anything like that. You know, we're, we still were trying to be safe.
Evan Kelly  16:13  Well, we're all still here and Krystian, you're producing some excellent, excellent content for Kamloops and everyone online. Is there anything else you'd like to add before we sign off?
Krystian Shaw  16:22  Um, I would like to say thank you to all my support people, as well as Justine from the community companion program. Thanks for my readers too.
Evan Kelly  16:38  Krystian, I couldn't have said it better myself. Thanks again, so much, for Krystian Shaw and his mom Linda, it's been a pleasure to have you on the podcast. You have been listening to the DDA encouraging abilities podcast. Our guest today was Krystian Shaw, author and publisher of the Kamloops self advocate putting Kamloops on the map newsletter. He can be found on Facebook and on his website at selfadvocatenet.com. Thanks for tuning in for DDA's encouraging abilities podcast. I'm Evan Kelly.