Blake Hunsley 0:00 You're listening to within our reach, a podcast by reachability association that focuses on accessibility, inclusion and leveling the playing field at work and in your community. My name is Blake Hunsley, and my co host is Shelly Alward MacLeod, and today we're joined by local advocate and activist Milena Khazanavicius, to talk about how we can be better allies to the blind and partially sighted community. We hope you enjoyed the episode, Milena, thank you so much for being on. Why don't you introduce yourself to our listeners?

Milena Khazanavicius 0:27 Well, thank you for having me, as I sit here and smile and grin like a Cheshire Cat.

Blake Hunsley 0:32 It's a beautiful smile for those who are listening.

Milena Khazanavicius 0:36 So my name is Milena Khazanavicius. I'm completely blind. I've been blind

Milena Khazanavicius 0:42 30 years now, 53 happy to be so I'm told I've got gray hair on my head. I have past shoulder length, dark brownish gray hair, big brown eyes, and they're fake, so I pop them out at Halloween, when my brother and his husband come home, just for the fun of it, and

Milena Khazanavicius 1:02 let me see what else about myself. I'm originally from Lithuania. Moved to Canada in 79 I travel around with my fourth guide dog, guide dog named Hope. And, yeah, it's been an interesting journey of 30 years of living with sight loss,

Milena Khazanavicius 1:21 and I'm all over the place. I believe HRM many of the staff don't like me any longer.

Blake Hunsley 1:26 Well, if I can give my two cents on that, you're not a quiet, retiring type, which I enjoy about you a lot. So I'm excited about this podcast. I've been fortunate to know you for a couple of years now, and you've had lots to say in that time, but I have to say the reason this, the reason that this was the topic for today's episode, was actually the very first Jane's walk that I went on with you, where you were having people go in blindfolded pairs. You, one of the first things you mentioned was to speak up if any one of the sighted people on the tour saw something like a sign that had been put at shoulder height that somebody was going to crash into things like that. The very next day, I was out in front of my house, and two little kids came by, and there's a fire hydrant in front of my house that has one of those big metal poles on top with a little stop sign so the fire department knows where to come. And the kids thought it was hilarious to take this big three foot metal pole on the top of it, and it's hinged, and you can push it down so it blocks the sidewalk. And they thought that was hilarious, and they were jumping back and forth over it, and then went on their merry way and left it down. And I honestly like to think I would have mentioned something to them the day before. Talking that face right now is going

Blake Hunsley 2:38 and you better believe, you better believe that I very politely went and said to them, Hi, can you please not do that? If somebody was blind, they would crash right into that metal bar right at me height, and they hadn't thought about it.

Blake Hunsley 2:48 It's a small thing in the moment, but I hate to think that I might not have thought about that the day before, but because we'd had that conversation, it's a very it's an extremely minor way someone can be an ally, but it's the kind of thing that I think too many people don't think about. So I'm very curious, in little ways and big, how people both people who are sighted and people who are not, how we can be better allies to people who are partially sighted or blind.

Milena Khazanavicius 3:13 Well, first of all, I'm glad that you did what you did, and I will correct you that what you do was actually a big thing, because somebody walking into a bent metal pole can't see, you know, can cut their lip, cut their nose, injure an eye. No pun intended, right? Whether your eyes are fake or real or whatever, you can get an infection and end up in hospital. So what you did was actually a big thing in a small way, and also a form of education, educating the young ones, right? Because the young ones, the young ones, are the I have found over the years the most spongy, you know, spongy kind of resource to go to, because you can tell the little kids. And I do a lot of school presentations, and they get it, or they get it to the to the their best ability. I can talk to adults over and over and over, and I have done so, and it's one in one ear, whatever happens in the brain and not the other, right? And so it's, it's like, it's almost like, forget, but yeah, things as such as you mentioned, you know, low hanging tree limbs on the sidewalk. Talk to the neighbor, let them know. Look how somebody who can't see you're going to get past that and they're going to lock their face off, or whatever the case may be. And just on that topic alone, you know, I have had many of colleagues, acquaintances, friends who are blind or partially sighted, cut their foreheads open, damage their cheeks because of construction signs. We won't talk about that because we'd be on construction. I'm going to be in therapy really soon about that. And.

Milena Khazanavicius 5:00 Um, you know, or again, just a mentioning of tree limbs and branches and Rose thorns

Milena Khazanavicius 5:07 bushes, you know, I was walking one summer, and there was a this hedge of really pretty smelling roses, and didn't really think it was there. And while my guide dog at the present, try to walk me around it. It was impossible, and I ended up scratching up my my arm, you know. So that was joy. A lot of joy. Anyway,

Milena Khazanavicius 5:30 what was your question?

Shelley Alward-MacLeod 5:33 That was, that was a great response. I love the idea of the kids. I think they are spongy because they don't know any better, like they're still in learning mode. As adults, they've built habits, good or bad, okay? And many of the things that they do, they're they it's hard for change at that point, because they're just so used to walking down, let's say, a sidewalk, and they just navigate their way down. They're not thinking about anybody else, right?

Shelley Alward-MacLeod 6:03 So I really, I really, would like to, you know, continue up, you know, this avenue discussion on what are some, some things that people could be doing and things that we shouldn't be doing on the flip side of that, okay, well,

Milena Khazanavicius 6:24 so I've just, I've just come from one presentation into doing this podcast, a smiling again, and I was and I was doing a presentation to new bus bus drivers for HRM Halifax transit. And I've been doing this for about 17 years. And one of the things I talked about the new new driver is not only you know how to assist passengers who are blind and are partially sighted when they're when they're riding Halifax transit, but also we just go through different things, such as technology and the benefits of technology, or the barriers of technology right now, And I'm getting to my point. So number one,

Milena Khazanavicius 7:03 you know a lot of buildings right now that are going up, affordable housing, not okay. They have touch screen entrance systems, right? 350, units, no voiceover, no tactile button, nothing. So Shelley, if I was to come visit you here in one of these condos or Blake, you know, I have to swipe the entire screen 350 units answer, hello, hello, hello, hello. Because, right? Because I don't know it doesn't talk to me. You see it, we can do it right. It's not a lot of money for the developer to install right alongside a tactile touch pad. Obviously I'd have to know, you know your your your code, so you can buzz me up or to put a

Milena Khazanavicius 7:52 text to voice. So as I'm swiping, just like, just like it happens on the iPhones, right that it would be talking to me, so I can enter what you can do as an advocate there every building you go into and you notice, is track down the manager and say, Hey, how is somebody who's blind or partially sighted going to get in here when there's nothing, right? Likewise, with a lot of debit machines. So I'm at a I'm on a bar or a pub, a bar, I don't go to a bar. No, I'm holy, never mind,

Milena Khazanavicius 8:25 right? And so and there are and the machines these days again, a flat touch screen. There's nothing there for me to recognize where there's the five to punch in my pin because I choose to not to have tap on my card, as we all should have the right to do, so Right? So I push in my pin, and

Milena Khazanavicius 8:49 if I can't tell where the five is, because it's it's a touch screen, then I am subjected to giving my pin to the server and then trusting that they're actually telling me what they're telling me, right? I was at a pub at one point,

Milena Khazanavicius 9:06 and that server put in the tip without asking me whether I wanted to put in the tip. Now, I was going to give them a tip regardless, but I was going to give it in cash, because that's my my way. And this person just put in the tip on their own and proceeded to do what they did. And I said, Oh, I'd like to give, oh, I gave myself a tip, right? So, and I was quite angry, I was diplomatic, right? And I said, in the future, don't do that, and don't bring me this machine, because there's no way for me to tell what is actually on the screen and what I what I've done. So, Shelly Blake, everybody else, you know you're somewhere again. Be kind, be nice. You're not living it like I am. Potentially, I'm allowed to get angry. But ask the people when it comes to technology and things, how is a person who can't see going to use this mechanism in your business? Because we spend money, some of us spend the.

Milena Khazanavicius 10:00 Lot of money at a bar, not really. You

Shelley Alward-MacLeod 10:03 don't have to give away those secrets here today. Listen, I've been to a bar with you. It's not that big of a that's

Shelley Alward-MacLeod 10:11 because you were buying it was okay, sure, exactly. I have a question. I do actually have a question on that. So

Shelley Alward-MacLeod 10:19 let's say I'm sitting at another table, but I'm witnessing what you just talked about happen, right? And

Shelley Alward-MacLeod 10:28 would you how would you feel if I was to interject to to give assistance ask? Should I be asking you, if you want assistance? Should I be giving assistance to the server as to what maybe they should be thinking about.

Milena Khazanavicius 10:45 That's a good question in a situation like, you know, like at a restaurant, in a bar, it that would, I would say, would be a little bit awkward. Okay,

Milena Khazanavicius 10:54 you know, I'll backtrack a little bit. So if you see a person with the white cane, a white mobility cane, or a white ID cane, which identifies they have some sight loss. It's a smaller white cane or a guide dog, okay, guide dog harness handle, not a vest, not on a leash. The rigid harness is what people are looking for, right the ridge in the harness, yeah. Generally, a U shaped handle that a person is blind or partially sighted. I have to put that in there. Don't cut me out of that one. Okay? So you know, when we're at an intersection on the road, you come up ask if the person needs assistance, don't grab the dog. Don't grab the cane, don't grab the person. Probably, like me, they've taken self defense. You're going to get hit, right? So you we don't what, we don't know what you're doing. Absolutely great. Great recommendation, right? Yeah, so, but in a restaurant, in a grocery store, something like that, you know, you can ask if the person needs assistance, if you witness something, let's say mischievous, going on by the server or cashier,

Milena Khazanavicius 12:02 then feel free to ask that person who's serving the person who's blind or partially sighted, because obviously I wouldn't have known Right, right? I wouldn't have known had I not been paying attention. And I pay attention, what happens with my money? You should see, how many of my friends who are sighted who go out and shop, and I'm like, How much did you pay for that? I don't know. What do you mean? You don't know. See, but I'm always on what's happening with my money, etc, etc. So I'm on it with the servers. And given the fact that the server tipped themselves,

Milena Khazanavicius 12:33 I was aware, had you seen it? But I hadn't asked Shelley. Then, you know, then I then I would have definitely 100% appreciated you telling me that addressing that server because I didn't see what that person did, but always ask, okay,

Shelley Alward-MacLeod 12:49 yeah, and that's, that's a good point for our listeners today too, to remember it is about asking. It's, it's about kindness as well, kindness, but it's always about consent. Yeah, that's the biggest thing, absolutely, because in and the reason I asked my question was the fact that

Shelley Alward-MacLeod 13:08 I could picture myself sitting in that restaurant and observing that, and I would be getting angry on your behalf, okay, and I would want to say something, because one either that server doesn't know because they've never been trained and they're, you know, they're ignorant to that, or they just have poor customer service skills. Either way, I'm still angry, right? Yeah, and when I, you know, when I see somebody that I feel is being taken advantage of that. So that's why I asked. I wanted to hear from your perspective, like, you know, should I have spoken up if I saw that

Milena Khazanavicius 13:46 definitely, or or consent, or asking consent, you know, or if the server has walked away, and, you know, you want to come up to me and say, I'm wondering if you realize, realize what this person has done. It's a lot better than just

Milena Khazanavicius 14:01 you, you know, interject, interjecting into the conversation again. It depends on what's really happening, right, right? Because, because, then you're taking away the opportunity for the person who's blind or partially sighted, or any disabled person, for that matter, to stand up and and educate and advocate for themselves.

Shelley Alward-MacLeod 14:21 So good that I you for saying it that we have to advocate, to educate or advocate for themselves, because I don't know, and I think that's important me and everybody else who's sitting there. We don't know what you are able to advocate, and we're just jumping to conclusions and making assumptions, which is not a good thing.

Milena Khazanavicius 14:40 I'll give you, I'll give you one example. Okay, so

Milena Khazanavicius 14:44 I was with with friends going to the casino. Casino always seems to be a problem. Have a guide dog with me, and there was hesitation from the security. Well,

Milena Khazanavicius 14:57 no, you can come in here. That was, that was the security.

Milena Khazanavicius 15:00 It always happens at casino for whatever reason. I don't know, okay? And I said, Do we have a problem? I'm smiling, and I'm like, because I know what's coming. I'm at the casino, okay, which, by the way, not a single casino machine anymore is accessible, no noises, no nothing. Can't pull the flat screen Exactly.

Milena Khazanavicius 15:22 Not that I'm encouraging gambling because I'm not

Blake Hunsley 15:25 gambling and drinking so far.

Milena Khazanavicius 15:29 No, never mind.

Milena Khazanavicius 15:31 Wait till it. Wait till the midnight hour comes. No, okay, and so the security, the person is, is it goes. I know you can go in. I just have to make a phone call and my friend behind me, there's a guide dog, and she's allowed in, and so on so forth. You know, the security guard was like, oh, never mind. Okay. So he let me through the security guard, which he would have done anyway, but I actually didn't appreciate what my friend did, and I'll tell you why. First of all, they raised their voice.

Milena Khazanavicius 16:03 They spoke on my behalf before I even had the opportunity to speak for myself. And I've been a guide dog handler for 23 years. I know how to handle people, how to make them understand whatever the case the security person

Milena Khazanavicius 16:20 was checking in, probably guaranteed that they were looking for the vest on my dog, which my again, my dog doesn't wear a vest it's wearing, right? But what my friend did was really disabling and debilitating to me. So by the time I got down the escalators I turned to her and said, Don't do that. First of all, you came off as an angry person. It doesn't make me look good, and that's not how I choose to interact. If I had a problem after I explained to the security, then you, as my friend or any other public member, can stand by me and, you know, help to advocate that way, but don't speak before I've spoken. So anyway, they kind of snorted. They weren't impressed. But whatever, we got over a couple of drinks later, and

Blake Hunsley 17:10 if I can, I want to talk about an experience I had with you, not at a bar. We were eating out at a very reputable restaurant, but and I'm actually going to name them, because I was really impressed by this, and where we're talking about proper training, and because you, you and I have had conversations before where you've gone to restaurants and fully been denied entrance because you have hope with you, which I get quietly enraged because, yes, I don't want to get enraged loudly on your behalf, but it did bother me, of course, but you and I went and had dinner At, I believe it was the Agricola street Brasserie once, and the waitress who took us in was great. And obviously there was no hesitation going in the restaurant with hope that was completely fine. And, you know, a couple tables kind of raised an eyebrow, but everyone was, you know, thankfully silent, and nobody decided to that they needed to be involved in something that didn't concern them. But when the waitress sat you down, she explained where everything was on the table immediately, without being asked to use the clock face as well to tell you where everything was around your plate. And then she described, and this is this has stuck with me since she described the special that night, and when she was talking about the chicken, she said it's about half the size of a deck of cards. And I was so impressed she had everything right away. It didn't take her a second to switch into how can I describe this in a way that is going to be as clear as possible to you? And it didn't. She didn't hesitate for a moment. I was really impressed by their training. There is that something do you find is becoming more common, or do you find training is just a constant issue with with staff?

Milena Khazanavicius 18:37 Um, I remember. So the truth of the matter is that that that lovely server, I had been in there before, and while, from the get go on, on, from the first time I'd run into the to this person, they were already semi knowledged. And over the times going into the brasserie, right? I was a repeat customer. So

Milena Khazanavicius 18:58 this person was up to par, but they already had that initiative to begin with. And, you know, how do I best assist you? So

Milena Khazanavicius 19:06 service like that, you know, yeah, you I come across

Milena Khazanavicius 19:11 maybe one out of 20 where they Oh, your glasses, your glasses over to your to your right hand, or whatever. Speaking of Agricola brasserie, brown hound. They're great, I don't know. Maybe because it's a small place, they're afraid the blind person is going to knock over the good

Milena Khazanavicius 19:28 beer glasses on the left. But whatever is happening at the brown hound there. I mean, are phenomenal, really, you know, I don't, I don't, I don't feel, Oh, I have to explain. You know what I'm asking, whatever. And then you go to other places, and people are completely, you know, gobsmacked. Oh, my God. It's a person who is blind. How do they walk? How do they breathe? How do they talk? You know, it's stuff like that. So there are people, I think the more, the more advocacy and education that is happening in.

Milena Khazanavicius 20:00 Yeah, in public. And what's happening with disability communities, and, you know, this whole accessibility

Milena Khazanavicius 20:06 by 2030, kind of BS, but it's all out there, you know,

Milena Khazanavicius 20:12 it's, it's all still working, baby step by baby step in educating people. And if they don't know that, they're asking so, so there is work out there that that's being recognized, and there's people who are doing and then there's people who are completely ignorant and belligerent to to what is

Milena Khazanavicius 20:31 happening with people with disabilities, all people with disabilities, right?

Milena Khazanavicius 20:36 Not just, not just the ones who are blind or partially sighted. But I do want to say I want to go back as Blake, you started with the Jane's walk, yeah, which I've done for three years. I didn't do one this year, which we should just explain briefly what the Jane's walk is, for people who might not know too

Blake Hunsley 20:52 I'll let you handle that. So the Jane's walk is, is, is,

Milena Khazanavicius 20:58 oh my gosh. And the last name for Jane is failing me right now because you put me on the spot. I'm gonna look it up. Look it up while you're doing this. Look it up, okay? And we're both gonna go, Ah,

Milena Khazanavicius 21:07 so it's, it's a local community residents and, and you, you know, you put together a walk on history, or whatever the case may be, and you take your neighborhood people around. And this happens all across North America, right from from our neighbors to the south of us. Never heard of them. Continue. I got some good civilized friends in the US. Okay, civilized. They still exist. Big word civilized, okay, and and then, and in Canada as well. I believe Toronto actually has a two day Jane's, Jane's walk events. And so I have participated in Jane's walks. You learn a lot. You can learn about art history,

Milena Khazanavicius 21:47 culture, et cetera, et cetera. So I led for three years just, hey, come take a walk on the blind side, you know. And we talk about myths and falsities, about people who are blind and partially sighted. You go under blindfold. And we we have done about an hour and a half generally runs two hours

Milena Khazanavicius 22:06 walking through the neighborhood and and I like to take people through the construction zones in my neighborhood, which there are a lot, yeah, well, you can't cross an intersection, or if you've crossed an intersection and there's a giant hole in the ground that's barricaded. And you know, you're in the middle of a four lanes of traffic, and you have to turn around and go back. Not good, yes, because there's nothing to align yourself with as a person who's blind and you're walking into traffic. So it really works. And what? And you know, and what happens through those Jane walks, whether it's 20 people or 40 people, they learn, and they're aware. They're aware now, and they're looking for things, and they're doing and I get a lot of my friends in my neighborhood now, like, oh my gosh, I'm cutting, I'm cutting the bushes. Or, you know, Milena, sorry I didn't move it out of the way, or whatever is on the sidewalk, or whatever the case may be

Milena Khazanavicius 23:01 these things because I'm tired.

Milena Khazanavicius 23:06 I'm very, very tired, and I have something not pleasant to say after about the blind community population, as I like to say here, I'm tired of advocating. I go home. You know? It's just like it's exhausting for all people, and there are a few of us who are out there doing the advocacy

Milena Khazanavicius 23:27 in Nova Scotia,

Milena Khazanavicius 23:30 because this is where I live, this is where I lost my sight. But I've traveled around and I've seen much stronger groups, but I find that around here that people bitch and complain,

Milena Khazanavicius 23:43 holler and scream, and when I ask them, call 311,

Milena Khazanavicius 23:47 address the person you know, go back and make a phone call. Explain to what happened. Whatever you want. I'm going to City Hall again. HRM staff are to some of them don't want to talk to me anymore because I've been in their face because I had no choice, they put me in the corner.

Milena Khazanavicius 24:04 So my community slash population, as I like to say, and I'll tell you why complaints

Milena Khazanavicius 24:08 and complaints. When they say I'm gonna go to City Hall, you just need to show up. Just show up. You don't have to say anything. You have to do nothing. Nobody shows up. They don't want to sign a piece of paper. They don't want to do anything. And therefore that leaves the half a dozen of us, or dozen of us who are out there advocating, exhausted, depleted, depressed, going to the bar and drinking too much.

Milena Khazanavicius 24:32 just so we formulate. I like to formulate,

Milena Khazanavicius 24:42 not work out, and to do

Milena Khazanavicius 24:45 my alliances and allegiances with sighted people. I'm going

Milena Khazanavicius 24:50 to tell you about it. You're going to go out there. You're going to see it. One of the first things that ever happened was there was a guy wire that was, I'm five feet tall.

Milena Khazanavicius 25:00 Dog, and I went, and I nearly hung myself on it my guide dog, because it hit my neck. Okay? Five of my friends in the neighborhood said, Oh, that guy wire has been hanging across the sidewalk. This was on Yonge Street for a couple of months. I didn't even think about it. Of course, you didn't think about it, because the sighted eye looks like you ducked under. They ducked under, and they kept on them, but they forgot Milena is going to walk here. I'm not going to see it. Okay. They're all the way to now, everything they're walking, they're going and so now I got five people at least, who are looking for anything that's low hanging. And this is, this is how we, you know, we get these alliances and legions again, I really have to be

Milena Khazanavicius 25:44 strong in saying this. You as an able bodied person or as a sighted person,

Milena Khazanavicius 25:50 can advocate on my behalf, but do it nicely. It is for me to lose my shit, because if you're losing your shit, then it doesn't look good, right? You say I have a friend, or have somebody who's blind or partially sighted, someone who uses a wheelchair, I know, pair it with a stroller, right? So, so you're not living it. You don't know the full experience, but now you know, and you're part of my team.

Milena Khazanavicius 26:14 I call them my Milena mafia.

Shelley Alward-MacLeod 26:19 It's, it's, it's true and I think that when, when I think back to it, and you, you may disagree with this, but when I think back about 20 years ago, where we're talking about national accessibility and whether we'll actually be where we're supposed to Be at 2030 that

Milena Khazanavicius 26:36 is bullshit, exactly.

Shelley Alward-MacLeod 26:40 But I,

Shelley Alward-MacLeod 26:42 I still play in the game, right? Yeah. But I think 20 years ago, people didn't talk about it. There was, you know, there was not, you know, when I think from an employer's perspective, you know, there was not a lot of talk about it,

Shelley Alward-MacLeod 26:58 I do feel, you know, in what I'm seeing that there's at least more people talking about so that's creating more of an awareness. Not enough, yeah, but you got to start somewhere. Like you said, in your neighborhood, you got to start with the five people, which, you know, was reminding me of

Shelley Alward-MacLeod 27:15 a situation this winter in my neighborhood.

Shelley Alward-MacLeod 27:19 They were not plowing the sidewalks down to like they were leaving these huge lumps and bumps. And we have,

Shelley Alward-MacLeod 27:31 we have somebody who is in a wheelchair, and

Shelley Alward-MacLeod 27:36 he was stuck on this bump went by on the car, so my husband and I had to get out, and we asked if he needed help. Obviously he did need help. And then I didn't just leave it there, right? I suspect that he probably called himself. I didn't ask, right? But we called ourselves okay

Shelley Alward-MacLeod 27:56 to make a complaint that this was not acceptable on the sidewalk, and later that day, I saw them out there, like leveling it down. And I noticed that after that, and then I was talking to our counselor, who I just happened to know, who said that

Shelley Alward-MacLeod 28:12 they made some training for those drivers to make sure that the end explained why it needed to be leveled right down to the Yeah, to think so again, while it was very unfortunate for this person, okay, but now maybe we've created some advocacy, some training, and maybe that's only three people, but that's three more people than there were the day before, right? So it is a big, you know, your talk about advocacy. It is a big, a big thing that needs to continue.

Blake Hunsley 28:44 This is why I'm really happy that you're going into schools to talk about this. Because I think you talk about people going on the Jane's walk, and suddenly it occurs to them to keep an eye out for these obstructions and for things that they can actually make a change on getting kids to pay attention that stuff is brilliant, because that's going to stick with them for life. What I would love to see, and I'm curious if you have any resources you can recommend for this is, I'm thinking back, I spent many years working in customer service, right up until about five years ago, never had a minute of training in how to assist someone who is blind or partially sighted or has any sort of disability. It did not come up. If someone came in with a disability and I did not know how to best help them, we would have to figure it out together. Figure it out together, because it just wasn't addressed at all. I think that is insane. Honestly, when we live in a province with the highest rate of disabilities in the country, we're definitely missing a big gap there. Where would you recommend someone who's running a business turn if they want to get proper training for their staff, specifically on how to better assist people who are blind or partially sighted, or is there somewhere that exists that you would...

Milena Khazanavicius 29:47 Call me. I need the money

Blake Hunsley 29:52 listen. We're into plugging businesses on this podcast. Absolutely right. You contact us. We will send you to Milena right away. That is no problem. Um.

Milena Khazanavicius 29:59 Good question. You know, I you can look on kind of rolling my eyes, but you can look on the cnib national websites, there is something called clearing our path. There's plenty of YouTube videos on how to guide a person's blind or partially sighted, or, you know, call in whatever organization that you you know, you feel, you know, and yes, and we're speaking of, you know, blind or partially sighted, but call it in to whatever rehabilitative organization, or whatever the case may be, and say,

Milena Khazanavicius 30:36 Could I get some training in from my staff? And I'm sure, you know, CNIB would go in and do that. I definitely will, and I do. And again, I'm self employed, so

Shelley Alward-MacLeod 30:47 no, I think this is an absolute plug that we need to be

Blake Hunsley 30:50 honestly. I was just about to say, What's the best way for people? Is there somewhere where that you can give out on the podcast, that people can get in touch with you through, or would you rather they just call reachability and we send them?

Milena Khazanavicius 30:59 Call Reachability. I don't want all sorts of phone calls.

Shelley Alward-MacLeod 31:08 I can appreciate that.

Shelley Alward-MacLeod 31:13 But you also talked about some training that you're doing, that you were doing before you came here, was to the bus drivers, like the new but new bus drivers, I think that okay is something that for employers, okay, or employees okay, that can talk to their employers. That is a great training opportunity. And I talk about this all the time with my clients, is having somebody in to train your people with the lived experience of what you're trying to portray to your staff. So like, you know they're trying to, I'm sure they have, Halifax transit has policy after policy of how to deal with people, okay, but actually having somebody who's blind or partially sighted do the training on that, okay, is going to stick with those people much more than if Shelley, the able bodied person who can see all the people, is up there telling them what to do. It's going to be like, yeah, stop talking Shelly and but I think this is a great thing, and more employers should be doing this.

Milena Khazanavicius 32:23 I have to say something here,

Milena Khazanavicius 32:25 because I'm very glad that that you're saying, you know, and I've been saying this, you must have, no matter

Milena Khazanavicius 32:32 what, the person with the lived experience come into the presentations, it is more impactful, absolutely Shelly and Blake. You can go in and you can go in and you can talk and you can say and you're getting it right. But then what happens? And I've done many presentation I also have for 25 years, co facilitated training, Vision mate

Milena Khazanavicius 32:51 training, and those are one on one, kind of like a buddy with the CNIB. 25 years, I'm 30 years blind. Okay,

Milena Khazanavicius 33:01 what is happening, what I've been seeing in the last I'd say, let's say decade

Milena Khazanavicius 33:09 and CNIB is a culprit as well. Okay,

Milena Khazanavicius 33:14 they have sighted staff. We need sighted staff. Or let's say, in an organization for autism, they have able bodied people, whatever, whatever the case may be, and what is being forgotten is the able bodied people are going and doing these presentations without the client.

Milena Khazanavicius 33:36 So I've been getting quite frustrated, actually angry, because frustration and anger are two different things. But I'm at the point of anger where, where, what's happening, and I will call C and I be out. You know they're that they're doing presentations on people who are living with sight loss without the person who's with sight loss with them,

Milena Khazanavicius 33:58 the importance of having the person with sight loss, when you're doing a presentation as a seeing person, as an able bodied person, is, I truly feel, in 30 years of being blind, that when I'm in the room, it opens up the opportunity to the people who are there to learn to ask yes, and they're like, and when they're asking All around the groups people are. I'm nodding my head now too, right? People, yeah, I didn't know. I was afraid to ask so I have a stupid question. And, you know, there's never a stupid question, okay, so and then and one person opens their mouth, and they're asking another person, another person, because an able bodied person or a seeing person doesn't understand. And I've said this to staff

Milena Khazanavicius 34:42 at CNIB. I'm a longtime volunteer with cnib. I will be so until they decide to get rid of me, which potentially this might happen after this. But I really don't care, right? So,

Milena Khazanavicius 34:55 so, so what happens is in and I've had it out, and some of the staff at cnib are.

Milena Khazanavicius 35:00 My very good, dear friends, and they've interjected when we're doing presentations. No, that's not true. And I said, here's here's the situation. You and I are friends. I'm also a client. I'm talking to you as a client. Do that again, speak on my behalf while I'm there. And I'm going to have a problem with you. Okay, you want to take this into our friendship. That's your problem. Because I really don't have a problem drawing the very big line between we are friends and when I'm the client and you're the staff, that's that. My beef with you as a staff. That's that. What I've explained to them when we're leaving after a presentation and such items have happened is this?

Milena Khazanavicius 35:44 You may be working with, with clients who are blind and are partially sighted five days a week, whatever the case may be, or with whatever organization, okay, but you go home, and I'm going to say this, you laugh, you cry, you have sex, you raise your children, you pick up that dog shit. Sighted, I go home and I do all that same, but I'm blind. You have no idea what's going on in my life. At the end of the day, when you and I part

Milena Khazanavicius 36:16 from the opposite, you have no idea so what you see while you're there helping or training or doing rehabilitation services, is not what is happening when we go home and when we're living I'm sitting here gesticulating all over the place, for those who care, because if we're talking to people or planning partially sight, you should know what I'm doing, right? So, and it hits, it has hit quite a few people, because at that point I'm pretty angry and and I'm raising my voice at my friends, at the staff. They don't know. They have no idea

Milena Khazanavicius 36:45 they've done a little bit of training, rehabilitation. Good for them. Pat you on the back, right? So, but you don't know when I go home. You have no idea that once in a while I forget to close my cupboard and I walked into it shit that hurts. Yeah, right. Oh, my brother and his husband come home from England whenever, as I mentioned before, right? And we're having drinks, and those two fools are sighted. They leave their wine glasses around, go to bed, and there's Milena knocking things over, not because I'm drunk, because I'm whatever I'm doing.

Shelley Alward-MacLeod 37:15 Well, that is a bit suspect (laughter)

Blake Hunsley 37:28 I do want to back you up on I want to back you up and add something here too, because having been to your presentations before, yeah, there is a massive difference with someone who's actually got the lived experience. Of course, it lowers that barrier that lowers your fear of asking questions. You're particularly good because you're also very funny, and that lowers barriers so much faster. Like, there's stupid talk about stupid questions. One of the first things I said to you when I saw you the second time is, it's nice to see you again. And I immediately thought, shit. And then and you, and then I overheard you saying to someone else on the Jane's walk, you're like, for heaven's sakes, don't police your language. I'm gonna say it's nice to see you too. That doesn't make anyone feel awkward and like unless you're talking to a blind or partially sighted person, you have no fucking idea. And most of us, you know, most people, don't have 6789, blind or partially sighted friends. They can ask about this. So it's so it's very true. It's enlightening, but it really does lower the barrier. It makes it a much more experience. We're talking...

Unknown 38:25 (Crosstalk)

Blake Hunsley 38:37 I nailed the last name. Thank you very much.

Shelley Alward-MacLeod 38:39 Far away from that, we flipped a coin on who was going to introduce you in that I won. So Blake had to do it, because I was like, I'm going to not get that name, right.

Milena Khazanavicius 38:50 Okay, Shelby,

Milena Khazanavicius 38:54 I'm kidding.

Shelley Alward-MacLeod 38:57 I wanted to come back to like, you know, an experience that I had right as a sighted person, right at CNI, and

Shelley Alward-MacLeod 39:08 I was taking my mother there, who had lost her sighs, losing her sight because of macular degeneration, for some rehabilitation training. And session one,

Shelley Alward-MacLeod 39:19 we're sitting there, and the person who's training her, or supposed to be talking to her, is fully sighted, like I am, yeah, right, and she's talking to me, yes. And we're not even two minutes into this session, and I'm like, Oh, we just need to stop right there. You're talking to me. We're here for my mom's rehabilitation.

Shelley Alward-MacLeod 39:45 So I think you need to start thinking about this from a non sighted person, because that is why we're here. Otherwise I would have given my mom the training herself,

Shelley Alward-MacLeod 39:56 and so she was very slighted by that.

Shelley Alward-MacLeod 39:59 Yeah, and then so as a result, it became very uncomfortable and awkward

Shelley Alward-MacLeod 40:07 to do for that, for that training, for for my mom, yeah. And so I think, you know, it's why, you know, I've been very, and this was quite a number of years ago, and it's why I've been very

Shelley Alward-MacLeod 40:21 big advocate from this whole lived experience, like of hemp for employers, right? Having people come in and do training, okay, that have lived experience, right? Like you have no idea, like I've not walked a mile in your shoes, although they are very nice shoes. We can talk about that offline. And

Shelley Alward-MacLeod 40:43 but I've not walked a mile in your shoes. I've not walked one minute in your shoes. So who am I to stand up and speak on your behalf? Which is why I'm also asked, asked you some questions, like, should I have advocated on your behalf? Should I have done this?

Milena Khazanavicius 40:55 But you are doing the right thing. So for example, the person who was in a wheelchair, you know, and you're calling in, the more calls are going into 311, the more that the city is going to wake up because, because, because those get recorded, and it goes to city, to city councilor, right? And then they, then, if they read the reports, and I'm friends with quite a few counselors as well, so you know, if they're reading those reports and like, it's not working, on what's happening here in the city. I don't, I do want to just say, just so it doesn't turn out like we're shitting on CNIB. Because,

Milena Khazanavicius 41:30 what you what you said, still happens, but not, not with the rehabilitation crew, because, again, they're not part of vision loss rehabilitation under a whole other system, and covered by by MSI. So the

Milena Khazanavicius 41:45 fact that, how many years ago, that whoever was there, when you were with your mom, was speaking to you, was completely wrong and intolerable. That's not happening any longer, which is a good thing. Very good thing. That's a positive, yeah, you know, and they do. There are people there who who get it, and they do great work. But more and more, I think, and

Milena Khazanavicius 42:11 this is sad to say, that I think people are taking jobs at

Milena Khazanavicius 42:16 organizations

Milena Khazanavicius 42:19 for disabilities, but taking them as a job,

Milena Khazanavicius 42:23 very few are invested in why they're there, here, here, absolutely right and and that is that is really bothering me

Milena Khazanavicius 42:33 a lot. I see it happening across the board with many organizations. You know,

Milena Khazanavicius 42:40 I'm all for you for advocating for me as well when, like I said, do it in a proper way. You know, when you're seeing, when you're noticing things,

Milena Khazanavicius 42:47 got a friend, got whatever. And, you know, no person in the wheelchair, how are they going to get over this? What you have here on the sidewalk, you know, you need to, you need to pave your your driver that's going across the sidewalk, or because, because this is a potential tripping hazard for all people, right? Or something that's sticking out, or whatever, that's advocacy from you on my behalf, on behalf of everyone actually, right? Because even folks today walking around with earbuds in their heads, walking into into wires and poles, and they're sighted, and they're like, Oh, God, right, so exactly, but it shouldn't be me that's going to to construction Nova Scotia, you know, and saying, Hey, we need temporary sidewalks when you're when you're closing three blocks of of sidewalk on on where there's four blocks, and where am I supposed to go? In the middle of the road, somebody sighted, able to walk the street with the car, can't do it. Person in a wheelchair can't do it. Elderly people with walkers can't do it. Parents with strollers shouldn't be on the road, right at all. Right? So we're advocating for one another, and this isn't building alliances and allegiances. The last part on this one, what I do want to say is, thanks

Milena Khazanavicius 44:02 for having me here. By the way, it's lovely to have you here. We talked about this for a long time. Is that, you know, I sit on I sit on

Milena Khazanavicius 44:09 enough advocacy

Milena Khazanavicius 44:12 groups, and I'm in my third term of active transportation Advisory Committee.

Milena Khazanavicius 44:19 One of the things that really bothers me is other disabilities speaking

Milena Khazanavicius 44:28 on behalf of other disabilities. So for example, if I'm going into to a restaurant, whatever, and there's a couple that I like, right? And I'm like, I have a friend who's in the wheelchair, there's no way they're going to get in here. So, you know, I'll say to the to the to the owner, and I say, how is my I got a friend, how are they going to get in here? Oh, you know, well, we don't know if we can do anything. I'm like, well, you're gonna find a way to do something, because you're losing business, because my friend on the wheelchair has a lot more money than I do, right? And, and.

Milena Khazanavicius 45:00 So here's what needs to happen. But before you go and do any renovating, talk to wheelchair users and at least five or six and ask them what's going to best suit them. That's to me, advocating for my friend who uses a wheelchair. Friends,

Milena Khazanavicius 45:17 I'm not going to tell them I'm not in the wheelchair. I don't live it. What I have been finding. And this goes on to I'm going to bring in a couple of things here. Hope you don't mind Rick Hansen certification. Great initiative, fabulous. But there are too many people, too many HRM staff, too many other people with disabilities running around. I have Rick Hansen training. I'm certified. Blah, blah, blah. They're so great. I'll tell you what the problem with Rick Hanson certification is. To this day, it is still not covering anything that blind and partially decided people need it fails. That's not what it was meant to do. It's not what it's there to do. And so every time a person is waving that certificate in my face, I'm like, oh, yeah, you gave this building this, or you gave this building that, or you gave this place that. What about the high contrast that's supposed to happen for people who have partial sight in

Milena Khazanavicius 46:10 this entire glass frontage, that a person is going to walk straight through that glass because they can't tell you need some sort of a decal on the glass so the person with some sight can tell this is a piece of glass, because the entire building is glass frontage. You can't tell the sun's shining. I've seen it happen. See I said I've seen it happen. No pun intended. Okay, pop the eyes out, all right.

Milena Khazanavicius 46:38 But, but that infuriates me more than anything else. And I've had people in advocacy groups who

Milena Khazanavicius 46:45 think they know what I'm going through and what I need, and you know and and they're saying, and I said, Don't do that. You don't know. You actually don't know. I don't know what it's like to walk with a walker. I don't know. You know what it's like to whatever I know, what I know for, what I live, and even I don't know 100% because I'm completely blind, so people with partial sight, you know I'll say it, and I know I know what I'm supposed to be talking about. Make sure you have high contrast. Make sure that you know that that

Milena Khazanavicius 47:20 there's tactile warning indicators at the top of the stair so on. That goes to benefit everybody, but I'm still not living the life of every blind or partially sighted person, but I know. I know my shit. I

Milena Khazanavicius 47:33 don't know the shit of somebody who has cerebral policy. I don't know that. I'm not going to talk about it, but I will tell the business owner or wherever I am, that talk to these people and do not proceed without having a conversation with at least three or four or five, right?

Blake Hunsley 47:47 I think we've had a lot of really good advice in this episode. If we can boil it down for a conclusion here, I think first person voices as many as you can, yeah, don't assume that you know someone else's lived experience. Be kind. Look out for other people. If you can and ask for consent, don't jump in where you're not wanted. And those seem to be the biggest things we can do. I'd also like to remind everybody, too, if you really can't find it in your heart to advocate on behalf of other people, just because you don't have a disability today, if you're lucky enough to live a long life, you will most likely have a disability. So be selfish about it. Advocate for your future self. Who is going to need this? If that's the line that it's going to take for you? But I think you've given people a lot of good places to start. I think you've been more than entertaining enough that we're going to have to have you back again in the future, on a future episode. I don't know if you could have finished the episode without saying it. The last thing I want to say is that it was Jane Jacobs. Was the name. Neither one of us were able to come up today. So if you're looking for Jane's walks, you can just go and search for Jane Jacobs. Jane's walks in your neighborhood. There's lots happening in Halifax.

Milena Khazanavicius 47:47 It's already passed this year. It's the first weekend of May, generally. So next, next may take a you know, keep an eye out.

Blake Hunsley 48:58 Perfect. Yeah. Is there anything else you would like to plug or let people know about before we let you go today.

Milena Khazanavicius 49:04 Blind people have sex, we drink, we party, we cry, we scream, we yell, we're all the same.

Blake Hunsley 49:10 If people hadn't guessed that before this point in the interview, they have not been listening.

Milena Khazanavicius 49:16 Give it. Give it. Give it. I know there's no camera anyway, but I gave a description, a bit of myself, describe yourself.

Blake Hunsley 49:21 I was wondering if we should have done that at the start, when you gave yours too. But then we get into the conversation so fast. Okay, I am a five foot six white male. I'm looking quite good. I've been going to the gym lately. I'm feeling quite good about myself. And you'll have to actually, if I can take your hand for one second. Yeah, this is new. I buzzed off all my hair, and you can feel it now.

Milena Khazanavicius 49:41 Oh, he's now, I'm feeling, I thought he had a headband on his head,

Blake Hunsley 49:44 but I do have a little headphone headband, sadly, not be jeweled or fancy. Oh, yeah, my eyes are blue. Blue eyes. Yeah. I don't know if we've ever talked about that before. That's fun. Shelley?

Shelley Alward-MacLeod 49:54 so I am five feet tall, and I eat too many desserts. That's what my body looks like. I am I am white female, and I usually wear very funky glasses today. They're like a clear kind of white shape on my large brown eyes and my very short brown hair that is covering the gray that should be there. And I'm wearing silver earring hoops with a little heart necklace that matches. And I'm wearing navy blue with mauve. Those are my favorite colors.

Blake Hunsley 50:41 You can't neglect the nails.

Shelley Alward-MacLeod 50:42 And my nails are two different shades of every opposite nail is a light pink and a dark pink. One of them has a little Magnolia painted on it for the nice spring summer weather.

Milena Khazanavicius 50:55 Oh, the pictures you put in my head. I love it. Thank you.

Shelley Alward-MacLeod 51:00 And I'm very matchy. Matchy. So you can assume that everything, when I tell you that I have Navy and pink mauve on today, everything matches.

Blake Hunsley 51:14 The glasses are usually color coordinated to the sneakers, which I always appreciate a lot.

Milena Khazanavicius 51:19 I love it. You're like a streak of beauty in all this grey.

Blake Hunsley 51:23 listen. We're all streaks of beauty in here. Okay, that's the most important lesson to take away from today. Awesome. Thanks for listening to within our reach. We'll be back in two weeks with our next episode. If you have an idea for an episode, topic you'd like for us to cover, or if you'd like to join us as a guest on the podcast, reach out to us at withinourreach@reachability.org. Thank you for listening. Milena, thank you so much for being here.

Milena Khazanavicius 51:44 Thank you for having me.

Shelley Alward-MacLeod 51:45 Thank you.

Transcribed by https://otter.ai