Michelle talks with Kathy Zant about disability and accommodations, from the lens of Kathy’s experience as a caregiver. It’s important to be aware of both the struggles and the wins when it comes to living in a world not always designed for people with disabilities.
Episode Transcript
Michelle:
Hi Kathy.
Kathy:
Hi Michelle. How you doing?
Michelle:
Good. I always start going, “Hi Allie,” but Allie’s not here this week, so you got my sing-songy, “Hi Kathy,” instead. Allie is taking a break this week. She has done some tremendous work in our community around diversity, inclusion, equity, and allyship, and she’s just exhausted. So, we’re giving her the week off and I asked Kathy if she would come in and talk with me about disability and accommodations and accessibility. Even, I’m forgetting my own words today because y’all know I wrote an article recently on post status about disability, my experiences as a disabled person at WordCamp US. And how it wasn’t horrible, but it wasn’t great either.
And so, Kathy has firsthand experience as a caregiver and I thought it would be great to be able to not just give my first hand view on things, but when you’re somebody who’s helping other people who have disabilities, what kinds of challenges, what kinds of victories. The victories are awesome. When I get to a hotel room and it’s a roll-in shower and I know there’s a handheld shower handle, I’m going to be like, “I get to clean all my bits and pieces. Every single part of me gets to be cleaned in this hotel room.” As opposed to, “Oh crap, it’s another sink bath for me,” kind of thing. It’s a different experience and whether or not I can get a door open or not. So, this was not something that you necessarily had to think about a little over a year ago.
Kathy:
Yeah. Somebody said something. I think it might have been in post status, we were talking about accessibility and stuff and I was at the time going through a lot of frustration with trying to get technology accessible for my husband who had just had a stroke. So this was a while ago, and somebody said and I can’t remember, I wish I knew who, but they said something like, “Everybody’s just one bad event from accessibility being the most important thing in their life.” And it just kind of floored me and I’m like, “I can vouch for that.” One event of my husband having a stroke, and all of a sudden now I’m trying to figure out all of the accessibility stuff and what’s going to work and what’s going to give him the ability to do more on his own without needing me so much, and all of those types of things. And it’s still a journey that I’m soaking in. So, it’s been frustrating and it’s been challenging and we’ve also had some good wins where we didn’t think something was possible or people told us we couldn’t and we did anyway.
Michelle:
Yeah, it’s one of those things where you have to think ahead when you’re going someplace. So for me, for example, I have a scooter. A lot of people know I ride my little scooter around. Chris Wigman sent me a Wonder Woman Cape for the back of my scooter so I can get where I need to go. But I have to think ahead like, “Am I going someplace where somebody could help me get it out of the trunk?” Because I can’t lift it in and out of the trunk and assemble it by myself. So, if I’m going someplace and it’s too far for me to walk with a cane and I can’t get the scooter out by myself, that I’m not going. Because I’m not going to go and just sit in my car. I’m not complaining. It’s just that I have to think ahead about these things.
I think ahead about how many steps there are to get into somebody’s house. I have a friend who invited me for dinner and there’s three steps up on her front porch but no railing. And to walk into her backyard, to go up the steps there, again, there’s no railing, but at least that’s against the house. But I couldn’t go that day, because I couldn’t do three steps without being able to pull myself up on a handrail. So I had to cancel dinner. And I’m not mad at my friend. She doesn’t have to have accessibility built into her home. I have to have it built into my home. But it does mean that there’re places I can’t go and things that I can’t do. I tend not to go to calling hours and things like that, when there’s a funeral because I would have to take somebody with me who can get my scooter in and out and I don’t want to cause a disruption by having to ask somebody to help me do those kinds of things.
I will go to a funeral, obviously. I’m not going to miss funerals and things like that that are important, especially if it’s somebody close to me or the family members are close to me. But I have to think ahead about a lot of those kinds of things. Restaurants, I have to think, “Can I do it with just a cane or should I invite some people along who don’t mind helping me with a scooter?” I know it’s silly, but to walk in from the parking lot into a restaurant and then back to the rest… Especially, if you have to wait for a second. I just can’t do it. So there’s a lot that goes into planning. And you’re at that point now where you have to think about like if you have to take your husband to the doctor, you have to plan all these extra steps to make sure it happens the way it’s supposed to happen.
Kathy:
Yeah, totally. And we’re at the point now where just moving out of the house is… We just got the motorized wheelchair, which is great because it’s all the bells and whistles on this thing. And he can move himself around the house and everything. And sometimes he’ll put on Low Rider when he is zooming around.
Michelle:
I love it.
Kathy:
Just to keep it fun.
Michelle:
Got to have a sense of humor.
Kathy:
You have to have a sense of humor with all of this stuff because it can be kind of heavy and depressing and I mean, it’s hard. I don’t know what it’s like being inside of a body that doesn’t want to do what you want it to. I don’t know what that’s like. I can’t put myself in that mindset. And so, I have to try to stay positive and try to put him in the mindset of, “This isn’t an end, this is something that we’re just going through right now.” But it feels facetious, like I’m lying. I don’t know. It’s really hard. The mindset stuff I think is some of the hardest.
I mean, planning is very difficult, but just keeping positive and just in a good mindset that, “Let’s do some physical therapy,” which he hates doing. Just doesn’t want to. And so, there’s a ton of challenges. To get a shower, we have to have a friend come over, because we have two showers that I could get him to. One of them has a glass door and that just scares me if there’s any one movement. And then the other one I can just get him in, but it’s a five inch drop and I can’t do a ramp because the ramp wouldn’t be… The shower’s not… So we just have to get him in and that is a huge challenge. So, we need two people to do that. So, that’s a once a week thing. Sometimes he’s just like, “Don’t want to shower today.:
And I’m like, “Well, this is the day I have help. So, this is the day you’re having a shower.” And so then he doesn’t get this decision. He can’t make decisions of how he wants his life to be because he’s got to work with what I can get, in terms of support. It’s really hard. And technology, the other thing is, I have a daughter and I don’t want to have to call somebody to come stay with him every time I need to run her somewhere. So, I’ll leave the phone on for him. He can’t just call me though, because I tried to show him how to work his phone again and it just doesn’t compute in his mind. He’s opening up pictures and he is like, “There you are.”
Michelle:
The synapses aren’t… Yeah. Strokes are amazing things, what the disruption in the brain is.
Kathy:
Sometimes it’s really funny too. Last week he woke up one day and he had slept really hard for 14 hours and I’m sure that’s the brain rewiring. And he woke up and he’s like, “Well, I’m guess I’m not going anywhere today.” I’m like, “Okay, why?” And he’s like, “My body’s not working.” This has been going on a while. It’s kind of like a groundhog day thing. He’s just completely forgotten a lot. Or sometimes he’ll wake up and you could tell his dream is still really strong. He’s been dreaming and mountain lions are in the backyard, and I have to remind him that we live where there probably aren’t many mountain lions and no, he’s not having it. “I’m just going to war with mountain lions. I’ll be back.” I don’t know what to say. He doesn’t want to… And then he falls asleep, wakes up and everything’s fine.
Michelle:
And sometimes-
Kathy:
It’s bizarre.
Michelle:
Does he still sometimes call you by the wrong name? I know that that-
Kathy:
Oh, yeah. Only, he calls me his sister’s name when he wants something. Only when he wants something. If I went in there right now, woke him up, he’d know my name. Or if he’s very relaxed or if we’re just hanging out, he knows my name, he can remember our daughter’s name. He remembers the dog’s name all the time. Although one day last week, the golden retriever was Wallace, his name’s Body. I’m like, “Okay, whatever.” It’s just weird stuff. But when he wants something, “Vicky.”, I’m like, “Please don’t Vicky me.” So, I’ll walk in the room and I’ll be like, “Your sister’s here?” I didn’t know, I didn’t even see her car. Oh my gosh, where is she?” I’m like, “Just please call me by my name.”
Michelle:
Exactly.
Kathy:
I try to have fun with it as much as I can. But it’s a challenge.
Michelle:
And I’m sure there’re times when it gets overwhelming and it’s not fun. And if I were you, I know me, I’m not putting words in your mouth. But I would have my moments of tears for sure when it’s just like, “I don’t want to do this anymore. I can’t do this anymore.” I mean, it sounds like I pity myself, I don’t pity myself, but I get frustrated sometimes and yeah, I get tearful too.
Kathy:
Well, like at WordCamp US, you were there seeing your friends and being in a social environment for the first time and it’s like you’ve got all of these good feelings going. And then to have just the facility and all of those issues that you’ve faced, get in the way of you having a good time.
Michelle:
“I’m stuck in the bathroom. Somebody let me out of the bathroom.”
Kathy:
Seriously.
Michelle:
It’s crazy. I don’t think I smelled bad by the end of the day, but I will tell you that I couldn’t wash my hair. So I was wearing ball caps. I wore a baseball cap day three, four, and five because I was like, “Well, this is how it is now.” And when I got home and I got in my own shower, it was just heaven. It was just heaven. Not only to have the hot water, but to wash my hair. Oh, your head starts to itch and hurt after not being able to wash it for a couple days. So yeah. I am so careful now about where I book myself in, because even if it says it’s accessible, I want to see pictures.
I want to talk to somebody before I get there to discover what does that mean to you? What does this hotel mean by accessible? And I have looked at the hotel that we’re booked into next year for WordCamp US. And there’re handheld showers, there’s the roll-in showers. They’ll even lower the bed frame for you so that if you can’t get… Because I sometimes… Okay, I say take a running jump because I don’t really run. We all know that. But this is the part I’m talking about. The bed was so high, that I had to put one leg up and push up off the wall to roll into the bed because I couldn’t just get in bed, because I’m short.
Kathy:
Oh my gosh. Also, sometimes a disability, with tall people stuff all over.
Michelle:
Disabled with short. And it’s just a recipe for like, “Thank God…” Michelle was my roommate, Michelle Mitchel Jones. If she had filmed any of this, it would’ve been hysterical. But thank God she didn’t. She was so helpful to me. But I mean, I look back, I have to laugh, right? Because that first day I just burst into tears and I put that in the post because I was so frustrated. I got stuck in the bathroom, the room is accessible, but it’s so far away. Thank God, my scooter could do it, because if I had to walk that far to an accessible room, then what’s the point of even having an accessible room? And I did get stuck in the bathroom and I realized that I wasn’t going to be able to shower and all of these other things.
And I was just like, “I just can’t do it.” I felt like Lucille Ball at that moment where she goes… But yeah. It was super frustrating for sure. But I’m glad you came in to talk from the perspective today of a caregiver, because unless you are either disabled yourself or in the position where you start to really realize… I mean, I think everybody has an understanding of, “Wow, wheelchair can’t get up a curb if there isn’t a curb cut?” Duh, we get that kind of stuff. But until you are in a position where you understand the planning that has to happen to take a shower somewhere, or to go out to eat or go to your doctor’s office, all these things.
I have to bring a friend to go to the doctor’s office because I can’t walk into the doctor’s office, but I can’t get on my scooter up by myself. I have those kinds of things, where it’s like I have to plan my life around a friend who will help me with these things. I get grocer delivery, but I can’t get the groceries from the front door to my kitchen. So my friend comes over here on the morning, like he was just here this morning. Wonderful person, Jeff. People hear me talk about him all the time. He has become one of my best friends. He will come, take 20 minutes to put my groceries away for me and while he’s doing that, he throws a dozen eggs in my Instant Pot so that I have hard boil eggs for the week. He is an angel among people.
And if you don’t have somebody that could do those things for you and to be able to plan along those lines, it could become very expensive to be a disabled person because like you said, if you have friends that’ll come sit with your husband, that’s great. If you have to hire somebody to come sit with your husband, that starts to become a very expensive thing. Retrofitting your house, some of it gets covered by insurance. Some things are not covered by insurance. If you use wheelchair service in an airport, you’re never going to let somebody push you halfway across an airport without giving them $5 or something. Like tipping. Every trip before I had my scooter was at least 30 to $50 in tips just for wheelchair services. It is expensive to be a disabled person.
Kathy:
Yeah, it is. It’s very expensive.
Michelle:
And I don’t think people realize all of that. I have Instacart deliver groceries. Do you know what the delivery fee on the tip? I spend about $50 at least just to have my groceries delivered. That’s above the cost of the groceries. I am blessed that I am in a job that I could afford to do the things that I need to do for myself. But not everybody is in that situation. And so, I guess my point in this conversation today is that from my perspective and from your perspective, the world needs to know, not to pity, but to help. So, how could you make the world a more accessible place for other people?
Kathy:
And the thing is, as a caregiver or even as a disabled person looking for help, you don’t want to ask the same person all the time. You’re blessed with Jeff to be able to do that. But it’s like, I feel burdened. I have my own way of getting myself out of that. Oh my gosh, I’m so burdened. But it is a burden. It is. It’s hard. It’s very hard. And I don’t want to put that on anyone else. I’d rather just take care of it. But at the same time, it’s like there’s only so much of me and I do need help. And so, being able to reach out to more than just a couple of friends and getting help from… Don’t get me started on insurance, social security, or the VA. All of these institutions-
Michelle:
That’s a podcast for another day.
Kathy:
Oh my gosh. Yeah, seriously. I mean, a lot of people will say, “Oh. Well, there’re systems and there’re nonprofits that’ll help with that,” or whatever. And they’ll say that. But trying to get those kinds of services can be extreme. That could be a job in and of itself. And somebody who’s already being a caregiver, having to go through all of the administrivia of dealing with all of that and phone calls and, “Why is this bill coming to me and not going to insurance?” And all of that is ridiculous. And these systems aren’t solving it. What solving it is, Jeff. The Jeff’s of the world, Those people who are like, “You know what? I’m going to go check in my friend. Or “You know what? I’m just going to make brownies for them because I know they’re going through a hard time.”
Or, “I’m going to send them some groceries.” Or, “The garbage cans are still out three days later. I’m going to roll them back to that person’s house because I know they got a lot going on.” Those kinds of things. But it’s like I can’t help somebody on the other side of the world, but I can help people in my community very easily. And so, being able to put down the phones and down the screens and check with neighbors and know the people around you and seeing if you’ve got even five minutes to help spreading that out really does help. And I was talking to someone yesterday who was kind of dealing with some depression and I’m like, “There’s someone who you were three months ago. Go find them and help them. Someone who just got out…”
Because this person had just gotten out of a really bad relationship and everything. And I was like, “Go find somebody who just got out of a bad relationship and just buy him dinner. Something small, something little.” But that opportunity of being of service and helping another human being, it gives you that pride of, “I did something.” It gets you out of your own head. And it not only helps other people, but it helps you. The one thing that I can say about being a caregiver is when I can put my burden self aside and just show up, be present and say, “How can I be of service today?” And just be that without any kind of need for payment or recognition or anything. Just, “How can I be of service?” I know who I am. And it gives me a sense of something.
Michelle:
You said that and as you were talking, I was thinking about the ways that people ask if they can help you. And so many of them are performative, right? “Oh, let me know if you ever need anything.” Well, I’m never ever going to call the person that said, “Let me know if you ever need anything.” But I am going to call the person that says, “”How can I help you today? I am going to call the person that said, “I would love to come over and just help you get your laundry done. And fold it up and put it away.” I will call the person that says, “Hey, I’d love to come over and make a meal with you and make sure that we have enough that you have leftovers.”
Those are the people that I’m like, “Hey, when are you available to do that? Because that sounds like fun. I’ll get some wine. We’ll have a nice evening and I’ll have leftovers.” I get to spend time with somebody and I get a home cooked meal because it’s something I can’t do very easily for myself anymore. Those are the people that are the real MVPs. The ones that don’t just say, “Oh, call me if you ever need anything,” because we’re not calling, We’re not going to call you because it doesn’t sound like you mean it. But the person that says, “How could I help you today?” And leans in and really gives that feeling of, “I know this person means what they’re saying.” Those are the people that really make a difference for sure. And I don’t know what just happened. Can you still hear me?
Kathy:
Yeah. You glitched a little bit.
Michelle:
My computer. It just went to sleep and I can’t seem to get back in.
Kathy:
Oh, my gosh.
Michelle:
Hold on. I was talking like, “Why did my computer go to sleep?” There I am. I came back. So, apparently I need to wiggle the mouse every once in a while. Anyway. Just to bring it full circle and just to end things. Be aware of other people. Be aware of other people’s needs. Hold doors open. If there’s not a push button for people. At least ask, “Can I get there for you?” Never push somebody’s wheelchair. Never insert yourself without asking first if somebody needs assistance, of course, because that’s just invasive.
But always be open and aware of the people around you and what they may or may not be going through. And just to remind people that disability isn’t always visible. You could tell I’m disabled, I walk with a cane and I use a scooter. Your husband’s in a wheelchair. Those are visible signs of disability. But not everybody has a visible disability. Some people just have trouble breathing and you see them walk and you wonder why are they parked in handicap. Because they can’t walk as far as you can. Maybe they’re just walking to get to the motorized cart. You don’t know. Cut people some slack and just be aware and just be available if you can.
Kathy:
And helping, I think too, with dignity. There’s a way of helping, I’ve seen it with just even parenting. Parenting with this top down, “This is the way things are going to be.” And sometimes with my husband, I’ll have to say, “I’m sorry. This is just the way it’s going to be because this is the way I have to deal with it, so sorry.” But I try to give him choice and opportunity to make decisions on his own of how things are going to be or where he wants to sit for a while, because autonomy is so much a part of human existence. And when you have a disability, I think a lot of times people are just like, “Oh, here. Let me just go fix this for you.”
It’s like, “Is there a way that you can help that person fix it for themselves, where they have the dignity and the value in themselves of yes they can?” And I think a lot of times there’s so much in our culture that takes away that dignity or just blanket, “This is the way it’s going to get fixed.” And nobody wants to bother with it and they put the bandaid on it and don’t want to hear about it. But how do we lift people up who have any kind of disability, so that they can find ways of doing things on their own and have that sense of dignity, that sense of autonomy. And I think sometimes we just get tunnel vision and focused in on just solving a problem rather than helping the human.
Michelle:
Agreed, 100%. Well, thank you so much for joining me today, glitching and all.
Kathy:
Thanks for having me. Thanks for having me and all. This was so great.
Michelle:
I appreciate your inputs. Absolutely. And we’ll see everybody next week on the next episode of Underrepresented in Tech, where we never know what we’re going to talk about, but I think it’s always important. So, we’ll see you then.