Home Accessible Home

Kusar: I had a bleed in the back, Spinal Cord They say you are burn with it! And it can burst at anytime Grace: accessibility, do you understand what accessibility is? Joschi: Ka! Grace: “Ka” means yes Patty: I was diagnosed with melanoma Umm they told me: I was going to lose my leg, above the knee Kusar: the only thing is that the kids are close by. Also it’s so easy for me to go to the hospital, to the doctor, everything is so central. Grace: what do you like about your house? Joschi: nothing Grace: Nothing! (laughing) Nothing! Geoffrey: Well I like that the house is so big and funky and handmade and some kind of big empty shell when we came here And we got to put stuff in it that we wanted to have in it. Patty: It’s cute (Laughter), This one is a lot tinnier and it’s cuter. So it’s easier for me in that sense. That’s just because everything is more compact. And I like that my bedroom is much smaller so I can get to things lot easier And I’m grateful that I have a walk in shower, no tub. Which is good and works for me. I just use the shower seat and the shower stall on my on suite Kusar: I would like one with the balcony, would be nice! That’s all. Then have few plants maybe. More than that to seat out. Geoffrey: like I would put, like I would like to put... a sidewalk or path to the backyard. Because, we swim in the river back there, we hangout out back there. And when we go down, we go on the wheelchair drive down and transfer out of the chair I lift him put him on to a blanket or we go swimming in the water Patty: I would rep out the carpets, just because then I could go on my stule and just scoot around. Right! Yah! carpet. I would get rid of the carpet. And also it’s very difficult for me to vacuum. When I vacuum, I have to do it on my bum. I want to bring the laundry room upstairs Anne (interviewee): It must be difficult for you because your elevator isn’t working? Kusar: Yes. It is so inconvenient. The bus comes in front of that door. Which the elevator is! I have to go all around, dress up for the cold and then wait for the bus Patty: I don’t have my hands wen I have my crutches. When I have t bring up laundry it’s like a pain in the ***. Geoffrey: barriers might not be physical. They might be like psychological or social umm… like not being able to open a door is terrible but not having people take your disability seriously or take your ability seriously is even more terrible. Kusar: They took out those closets, you know this much room, then there was enough room for the wheelchair to go throw They took the tub out and then they re-did all this So this I can reach, they took out the cabinet from here And then they umm… fix .. and there is the commode I go on that and they could push me in the shower Geoffrey: so it was a working mill when we got it. It was completely an industrial building. So we did everything that you see. Floors the walls, everything it got drywall on it we did. He was born we continued renovating, so like that is the second bathroom we had there We put the wheelchair ramp on the outside Patty: No! No option for renovation. Because it is a.. it is a rental home. Right? So I don’t own it. Mohsen (interviewee): Is the landlord not cooperating? Or you never asked? Patty: I never bothered to ask, it wasn’t .. umm… I don’t, like I’m not overly confrontational. And again I just needed a place to live. Right? So I have adapted at this point in my entire life to, in a 2 story home. It’s just is what it is. So I just learned it, I just learned to adapt Kusar: I would like to myself to be changed, that I can walk a little. Not the house, its not the house that’s the problem! No! Nothing. The house is perfect for me… they could, they have done whatever that could be done. And there is nothing better than this! The bathroom is accessible, they made the doors bigger, they took away every door for extra [space] Geoffrey: is there anything you would change? If you could change anything in the place? Joschi: nothing Geoffrey: nothing! You think its perfect? Joschi: Yes Patty: you are talking about nine years being like this. So you know! What kind of renovation can you do in a home that you are renting? Like really? disabled As a person what kind ..! If this is all you can effort! what kind of renovations could you ask your landlord for! Right? As a renter who is disabled, you just have t roll with the punches. There is nothing else you can do. So! Geoffrey: I think it would’ve been fun if it was in downtown Toronto. Like the amount of the driving we have to do to get to things, that’s get to be a bit of burden, sometimes, but that’s life. You know we get the benefit of living here! Which is very, very nice. Kusar: and I’m lucky that I … able to have somebody. Anne: Is that provided by the Ontario government? Or is it privat? Kusar: No, no, that’s why I’m lucky, my husband had a good pension. And it is sort of enough. I need at least $5000 a month. One nurse, who comes for an hour every day. Mohsen: what does she do? Kusar: she forget [empty] the drainage, so that also after lots of fighting. Anne: really ? you had to fight for that? Kusar: yes. I tolled them, because they say your income is… but the income is all gone back to the medical needs. I don’t… go out and floundering Geoffrey: Joschi gets people in here helping about 6 hours a day on weekdays and typically 3 hours a day on weekends. But beyond that we are on our own Like the concern is, for us! One of the things we think about is: when Joschi is no longer living here …. He is going to need 100% assistance. Right now we are getting lets say 50 hours a week. Something like that. So he is going to need tons more support once he doesn’t have his parents to provide the bulk of it. so we don’t know where that is going to come from! Or how that is going to shape up?! Patty: Government has a program called the assistive devices program. Which they pay for portion of mobility devices, right! They do pay for the portion of the leg. Not a lot of it hummm.. Like for example I have … for my.. manual wheelchair was like $8500, the government paid 75% of that I still had to pay 25% The new leg that I’m getting, the quote that I’m getting right now, if the leg costs $66000. The government, the assistive devices program will pay for the portion of it. Which it’s about a little less .. more than 10% I think. So my portion is $57000 that I’m paying for this leg Mohsen: How would it work for him, for getting the financial support, if only support 70%? Geoffrey: we don’t know! Humm.. so Joschi is 22, up until he was 21, there was one whole set of rules! And once he past 21, all the rules changed Mohsen: and that’s the Canadian government rules? Or.. Geoffrey: Ontario government. Geoffrey: this room is like, kind of parking garage for some of Joschi’s gear We got the wheelchair here, it’s on its charger, battery charger, there is the cricket lift Grace and Joschi were talking about. There is beanbag chair that we sometimes takeout when we go to places that don’t have couchs, This is the mount that MyTobii eye gaze controller usually seats on, this is an iPad mount. So just having a place to store all this stuff is important. Grace: you have 2 places, right? Joschi: ka [yes] Grace: you are in one right know. Joschi: couch Grace: on the couch Joschi: day bed Grace: and the day bed, what do you do on the day bed? Joschi: stretching Grace: when you are on the sofa on the couch what do you do usually? Joschi: eating Patty: when I’m in my kitchen I’m most comfortable, because I don’t have to use these. And I just hummm… slide around on the stule… now I have hands So this makes things so much easier for me, to just get around….I can just grab it… Kusar: for somebody who doesn’t have help would be hard for them,.. to go to the washroom myself. That’s the most important thing. I can change the top part, can wear a t-shirt, but... for my pants and all I can’t stand at all without a walker even for a minute. I have no balance I cant seat on the bed! Geoffrey: this was renovated to suit him, so we put in the changing table, the lift, so he can, we can get him ready for the bath there One problem we have, is that the other lift won’t go high enough to get him to on to that table. So there is no way to get him, on to that table. It has designed for nice comfortable height for me, when I’m getting him ready for his bath! But the other lift, doesn’t go that high! So we haven’t figure that out yet, after 22 years! Patty: so you like just, you get used to going up the stairs, you get used to like vacuuming on your bum. Because if you don’t! If you just seat and wait for the things to happen! … you know wait mean? Nothing is going to get done. And you can’t move forward. I got to do it, so you find ways to just get on! Right? Like if you are in a jungle and starving, you are not going to just seat and die. You are going to try forge your way and try to get food! And try to survive. I guess as a disabled person that’s just our way of surviving. You get used to the situations that you’re in. and you try andadapt! I guess survival is a better word. You just survive, that’s how you survive! Kusar: and the thing is they have them ready for me .. like I want to make … but I can do that much: turn the light on and the fan and fry an egg. Know I need to get that spatula! So that’s a big thing for me. Patty: you know a process that for anybody else takes not even 5 minuets! Less than, probably 15 seconds! To bring up the staircase takes me like a good 5 to 10 minutes. Right! And to do it in a way that I’m not going to hurt myself going up the stairs. And then if I had to bring it downstairs, it’s a little bit more tricky If it’s a lot of stuff, then sometimes I just throw everything over the railing And have the laundry basket waiting And I just seat on my bum I’m in the process of getting my leg. There was an anonymous donor who donated $40,000 to the campaign, so I have enough money to get my leg. So I’m just in the process of that. So they tolled me the leg that I’m getting should allow me to do 93% of the things that I used to do, before I was disabled Kusar: And they brought me here to Toronto, in to the rehab; they said this is the best rehab special one for spinalcord injury. So I stayed there for 2 months. And that’s when they got the bathroom renovated to make accessible Geoffrey: When he was first born and assist, we had physiotherapist CSAC or somebody came and said: Oh! You are going to need wheelchair ramp, you are going to need a bigger door on your bathroom you’re going to need a different type of bath tube Patty: that’s my training leg, I got it umm… maybe like 4 months after I had my amputation So it’s just ... when you … become a disabled person or amputee, you go to rehab and they teach you how to live the life as a disabled person. Right? So you’re given a training leg, which eventually they… it teaches your “stomp” which is actually the medical term for the amputated part of your body to learn how to weight bear. So that’s a training leg, and they teach you how to you know get around how to… like what to do, what happens when you fall, and this and that … Geoffrey: moving you know his bedroom form second floor to first floor and expand in to other.. more or less unused space, its like ummm… ok! That solved the problem. No, we didn’t have to, we were looking at can we get a lift that will go up the stairs … you know… bla, bla … And it’s like, you know No! We just live on one floor. We just change our life style We adapt to the environment, instead of trying to get the environment to adapt to us. Patty: there is totally and exclusion when you are disabled person. I can guarantee you probably not one accessible home here. And even if there was one is someone going to have the money to put an elevator in their home? Somebody is going to have the money to … put a stair lift? And where is the room going to be for stair lift in here? ….These cookie cutter homes are not designed for that so if you are a disabled person you basically just have to adapt, period. Abled body, disabled I guess! I don’t know how to explain it, the best way to explain it that can do as much as I can do, in a situation that I am in. so… Because there are other people on wheelchairs that can’t get out of their wheelchairs So what do they do? So, for them I think life it is a lot harder So, for me I have that opportunity… that I can get out of my wheelchair, I can lift it up a lift, a lip! Right! Its not the easiest or its not the best situation, but I can actually do that. Ultimately an accessible home is just a place... you know you just feel like a whole person. Not someone who is disabled. You just want to feel whole good when I come home because I feel comfortable. Everything is with in the reach. And I am myself when I am in my home Kusar: for living space, or for utilities for me for accessibility there is nothing better. They couldn’t do everything they wanted to Because the room was only that much. Geoffrey: a big part of the way we make the house works, as grace was mentioning was that we use things like a couch with tons of pillows on it. right. That’s not a special needs device, its just something we made work And this daybed that he likes, because he gets to stretch-out which helps relax his back Like the 2 things ... work the best for him are not special needs things. You know he doesn’t like the wheelchair that much, the lift is.. you know it works but it’s.. you know its not something that gets used a lot, it’s for transfers umm.. so .. most of things… that work well are not sort of disability related things, they are just add hug solutions that citizens would make. Like sort of things that … it would be nice if we had some sort of computer system that he could use with more ease and control It would be nice if he ... we could find someway to access switches so he could do things like drive his wheelchair Patty: they should just be... they should be dealt in a way that you become as you know! whole of a person as possible, that you know You don’t need to make modifications I get used to it, I survived in this matter for so long that this is my version of my accessible home