Encouraging Abilities Podcast

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.