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Amanda: Hi everyone, I’m Amanda Jurysta, producer of Four Wheels and A Mic. In this episode, Dominick dives deep into the challenges of finding an accessible apartment and the exhaustion disabled people face by always adapting to a world that wasn’t built with us in mind. Thank you for joining us. “Four Wheels” is a project of DisArt.
Dominick:
All right, so I have the thought and rant today about advocating for oneself.
So, ladies, gents, people of all types and disabilities. Welcome back to Four Wheels and A Mic Corner, with your host Dom. AKA, Four Wheels and A Mic.
Today’s thought, idea for the week is one a surrounded by my move again. So if you’ve checked out the last episode, we talk about sort of the move and the process, how that went about. This is about advocating for oneself.
So I moved into an accessible apartment with two other disabled gentlemen. This now has become a pain in my ass and a constant reminder how I hate advocating for myself so much that it gets annoying. And I wish that wasn’t the thing for disabled people as much as it is, to get what we need. [laughs]
The doctor filled out the ADA paperwork. All the bureaucratic stuff was lined up. It’s been about two weeks, maybe three now, about two and a half. Let’s just say that and haven’t heard back from the apartment complex and their, you know, higher ups to give me a ramp.
They also offered me to pay $200 on top of my rent money to go rent a ramp from a place that rents ramps. And I’m like, “Who’s going to fall for that?” Why you,where the ADA is put in place and it’s by law. So I’m just going to wait this out like anybody else would. Cause I ain’t paying $200 for a ramp unless it’s the only option. That’s where its at with that.
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Like I feel like I’m not a priority. You know, I think with the feeling of not being a priority in some people’s eyes, like, I’m always the last person, but then people are like, Why? How are you so selfless? Well, there’s some other factors to that, other than being disabled, but like it happens to be like I’m the last person thought about for anything.
Like I said that when I walked, when I rode into the apartment, I was like, okay, it’s accessible… enough, but who would sign off just in case it was emergency? Who would have thought? First and foremost, I have a 56 year old roommate and I have a 79 year old roommate. They both have bad stability when it comes to walking. Who thought a giant lift that’s about four inches higher than off the ground should be known as an accessible apartment where everything is definitely wider in space for, you know, equipment? But the four inches to get in the doorway. Like who thinks that would be considered that accessible? Like, Okay. Usually means flat to get a little speed bump, as I like to call. That’s cool, threshold speed bump. Cool. But a four inch like come on now. The only option is a ramp because it’s not the doorway, it’s a, it’s a cement block.
In disability. The beautiful thing is we are adaptable people. But the most irritating thing is we shouldn’t always be that adaptable. We’re paying money to live here. You’re getting money from us.
So we’re already on Section Eight. So that’s going to be an issue as a unit we’re paying a livable price, but it’s just subsidized a little bit. But what I’m saying is, like, it just cracks me up that you knew you were selling this unit and I brought this to, you know, the two peoples payees and guardians and like, you know, that’s like a four inch high. Like who would… like, I understand because I’m in the chair. My family woulda understand. My friends would have looked at it right away and been like, “Yo, this is, this is not feasible or this is something that like we have to think about ahead of time.”
And the funny thing is, when you’re physically disabled or people been around you long enough.They’re conscientious of the disability, but not to the point where it’s going to be a hindrance on the enjoyment of everybody involved. It’s just put into the plan of hey this is where it’s at. This is how it’s going to go down. And sometimes it can’t always work out like that. There’s been some events and stuff. People have openly apologized ahead of time and be like, “Yeah, we couldn’t get, you know, things that work out.” And I don’t feel offended by that.
We’re all dealing with people with disabilities. These family members know that their siblings are aging and disabled. So that’s a double whammy.
You’re supposed to think a little ahead long term, maybe five years, two years in advance of, oh, things might advance further. I know my family would have, you know.
But like, it also shows the throwaway method in the disabled community. I think.
What I mean is like, you know, how we treat our elderly. It says a lot about our society, right? And so, take that and be disabled. You don’t have to be elderly for your family to think, oh, we’re just going to put him him and her in a situation. They’re good. They’re taken care of. Out of sight, out of mind. And that becomes a prerequisite for some of these … for most of the people that I’ve roommated with.
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People are totally forgotten by this. This, this people are forgotten. And it’s this mindset of we see you maybe once a month or once on holidays or we won’t really check in. You know, and honestly, I tell people in this situation, you need to check in more often because you don’t know who’s taking care of your people. Now, mind you, with me, it’s a little different. I’m very vocal. You know what I’m saying? If there was an issue for real, you know, I have enough people that physically show up quite often.
Let’s just paint a vivid picture, here. Mental picture and verbal picture depending on how you’re digesting this information. Imagine a world where we could, we didn’t have to advocate all the time for ourselves, right? What would we do? I don’t even know if I can even answer that question without being confused, because it’s just so part of my life that there’s times in my life and I can clearly say this, there’s times in my life that I find that I have to think all the way through. I probably, I had more fun. I enjoyed myself a lot more.
The fondest memory of adulthood that I can think of outright, is when I went to the nightclub with my buddiess on Mardi Gras goth night for my and, you know, I got to feel like a normal 20 something. Friends carried my mini power chair up the stairs. You know, my other female friend made sure, like, I had enough beads to throw at the ladies.
It was kind of funny. And we’re talking, like, extremely like female rights. But it was like a thing that my friends wanted to do because we, they always wanted to do this when we were in high school and stuff; to take me somewhere and to really do this. This was like a thought out plan by them for years. And the first couple times, it didn’t work out when we went to the club because of transportation situation in my friend’s car. And, you know me. Whatever. And then it finally all panned out, was a great time. And, you know, I didn’t have to think about being the disabled guy until I like, my bladder kept spasming, which to have the CP moment. And your friend was like taking you to the bathroom every like 20 minutes cause you just had to pee. But that’s pretty funny cus at the same time I was trying to pick up, you know, get a girl’s number the in the night or just get somebody were trying to like talk to because it’s like, well, you know how it is. And your friends is like, oh, yeah, I got to go help my buddy real quick. I’ll be right back. You just go help your buddy. He just come back and me being me and helping my buddy. [laughs] Hey,how’s it going to go? That was a little awkward but, “Hey, how’s it going?”
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I feel like I do live life. Life this for the living and I’m not dead. So, you know, I’m living.
But to summarize in a short, brief statement, like I’m living, I’m living a fruitful, pretty happy life, but the amount of energy that I would use for other things would probably be a lot. I would get more done in this world. Like I think most disabled people would, though. I think people with these extra adaptive changes that they have to make to their life, I’m not going to call them challenges. There’s changes
And the skill set that it takes to do this is a very valuable thing, but it’s just fucking exhausting. I’m going to say that with with all intents and purposes, it’s exhausting. I can imagine people with large families have to do the same planning and thinking, so it will come into play.
I can’t imagine not having a disability, which I’m comfortable with, you know, we all have, like, little fantasies. Every once in awhile one pops in your head for like, 5 seconds. You’re like, fuck it. I’m going to keep moving.
Because if you dwell on it too long, you’re just, nothing’s going to happen. Your point of view is your point of view. By this point in your life, you’re an adult. You can, you can grow and expand that point of view, but society’s not built for us. Let’s be real.
Honestly, like I said, I can’t imagine a world where I don’t think about, “Hey, can I fit in that doorway? Hey, can I. Hey, can I use that bathroom? Hey, can I go to that restaurant? Is there enough space in that place for me to enjoy that good food or do I got to go take out?” I don’t know what it would feel like for me not to play chess with my every day life. Every step has to be planned out, and it’s quite annoying. It’s hard on relationships because you become a control freak in a way that isn’t clinically toxic. Like isn’t like this idea of society’s version of toxic, but it’s a level of control that people with disabilities, people without disabilities, it depends on their personality. Some people live by the seat of their pants and other people don’t have that luxury. And it becomes an issue.
I don’t like spontaneity because there’s too many variables I have to think about. My prime example is I have lots of people in my life that go on trips regularly to different countries, different places, and they don’t really have to think. They just have the save up money and go and it’s, I don’t know what that feels like. I don’t even know what that feels like when I go on a date. I pre look at the restaurants that I or like coffee shops to make sure I can get into the building. And it is a comfortable, I don’t know what it feels like to not have those barriers.
I don’t know what it would feel like you to be not thinking about everything every second, every minute of the day of how to navigate this world. Because it’s not built for us. And it’s exhausting. And if when I finally get to that question or answer, when I finally evolve past that, I’ll let you all know. Until then, this is Four Wheels and A Mic signing off. I’ll see you on the pod once again. Let’s do this!
Music Info: LoFi Chill (Medium Version) by BoDleasons https://pixabay.com/users/bodleasons-28047609/