Podcast

Interview Date | March 27, 2020

JILL: Welcome to the DisTopia podcast, where we look at disability from the inside out. [peaceful music fades in] For the next several episodes, the DisTopia podcast will be archiving DisArt’s My Dearest Friends project, a project generously underwritten by the Ford Foundation. The My Dearest Friends Project is a way to share our experiences, to disrupt ableist beliefs, to celebrate a culture whose lived experience of disability necessitates flexibility and creativity, and to validate disabled voices and perspectives in the midst of the COVID-19 pandemic.

CHRIS: The first component of this project is created in partnership with disabled artist Oaklee Thiele who is creating black and white illustrations in response to submissions from the disabled community.

What you’re listening to now is a series of recorded conversations with disabled people about their individual experiences with the COVID-19 pandemic, and the personal, cultural, and political alterations it has triggered. Guests are given the opportunity to share personal experiences of sheltering in place and to engage in conversations about deeper questions of individual passion, vocation, frustration, aspiration, and strategies for living an authentic and pride-filled disabled life.

JILL: You can follow the project @MyDearestFriendsProject, on Instagram, on Facebook, and at DisArtNow.org.

[music becomes more upbeat and bright, then fades as Jane begins to speak]

JANE: So, my name is Jane Hash. I’m healthcare consumer advocate, and I also refer to myself as an Ohio refugee that moved to Michigan about two and a half years ago. Because I utilize Home and Community-Based services for my activities of daily living, and in Ohio, everybody that is a dual eligible, which is someone who receives Medicaid and Medicare and healthcare services, began getting funneled through a managed care organization. Which none of them are equipped or knowledgeable enough to successfully manage the care of those of us with complex care and social needs, including those that utilize behavioral health services. So, getting care in my home became unsustainable. So, I sold my house and decided to try my luck in Michigan rather than check myself into a nursing home. So, things have been moderately better there in Michigan. They’re better in the sense that I have not been forced to sign up with a managed care organization. Although it is suggested to me on a weekly basis, and I get plenty of propaganda in the mail telling me how much better my life would be, blah blah blah. Screw that. That’s why I’m here in the first place! So, I don’t have the problems of a managed care organization here thus far.

But in a separate issue that is only exacerbated by the shortcomings of MCOs, there is a national caregiver shortage because even though PCAs, home health aides, homemakers—they go by a bazillion different names, but it’s the same profession—people that go to other people’s homes every day to get them out of bed, make them food, shower, activities of daily living. This is the fastest-growing vocation out there, and it pays shit wages. Here in Michigan, to do this work, it’s not mandatory, but if you don’t have a vehicle to drive, the clients that you can take are very minimal. You know, if you have to take a bus and you’re with your client for three or four hours, and they need something from the store, you have to go get it. So, if the bus system is not the most practical thing to do to use to get the job done. You really need to have your own transportation to be a home caregiver, home care provider in Michigan. And this state has the most, one of the most outrageous car insurance expenses. There’s no-fault insurance. I don’t drive. I don’t know all the technicalities of it. But people cannot afford to have a vehicle and do this job! It pays at max like $12 an hour. That is not enough to keep a roof over your head and take care of a family. So, there’s a lot of—

I am so fortunate that the three people I have taking care of me, which is not enough; they’re exhausted. But it takes three to cover my basics, to get me up, keep me alive. You know, we joke about it around my house every day when they’re getting ready to go home. We high five. Hey! Thanks for keeping me alive today. You’ve got job security as long as I’m still breathing, you know? But these people are personally invested in me. They are long-time family of friends. We’ve known each other 10, 20 years. They could make more money going someplace else. They just do this job because they want me to stay alive. Everybody’s not that fortunate.

So, this has a pandemic hasn’t really affected me a whole lot right now. Because as a result of this national caregiver shortage, I have not been able to do the regular things I would be doing for probably about three years now. I don’t— I have missed weddings, funerals, birthday parties, just a lot of social things. I’ve had to decline paid work. I’ve had to break contracts because I don’t have the support I need to fulfill all of those other areas of my life. I have been in survivor mode for years. , I guess shit, I’ve been preparing for a pandemic, I guess!

I am feeling the anxiety, and I’m pretty laid back. So, when I’m panicking, this is pretty much what it looks like. So, it’s not real noticeable unless you’re taking care of me. So, the added stress of just the germs coming into my house. I’m not an germophobe. We keep it clean environment. It’s not like a sterile environment. I think we keep a sensibly clean house here. But just getting the mail. Like, oh my god. Is there corona on the envelope? I do a lot of my shopping online because going to the store is so difficult. So, having my caregivers open things outside, leave packages in the garage for a while until we think anything that was on it could’ve died out. I am feeling that , and how that plays out is I either don’t having an appetite, or I wanna eat everything in the house. My uterus has completely abandoned our treaty agreement, and it’s doing whatever the fuck it wants, whenever it wants. So, that’s a good time as if approaching menopause isn’t exciting enough. So, there’s that.

I have been estranged from the majority of my family for like always. So, I’m glad for social media and texting so we can at least say, “Hey! You alive? OK, us and me too.” And we don’t have to talk any more than that. Yeah, so, I have been socially distancing not by choice for quite a while, and the cynical, cold, dark, hooded bitch inside of me, which is not that big, is just kinda like, ha! How do you like it now that everybody’s being affected?! Now, do you give a shit about the caregiver crisis? Now can we make this a priority and talk about it? Because guess what! People with disabilities are the number one largest minority on the planet, and we accept new members every day! And if you should happen to join the club, then you will give a shit. Because no matter how great your healthcare insurance is, if you became significantly physically disabled tomorrow, your insurance may buy you the best wheelchair on the market. But they’re not gonna pay for somebody to put you in that wheelchair and take you out as often as you may need to get in and out of that chair, so.

CHRIS: So, you know, you said so many just really important things that we could dive into. You know, I’m wondering this idea about finally having people see your reality, can you talk a little bit more about that? I like that you admit to yourself that there’s some snarkiness in that, right?

JANE: Mmhmm.

CHRIS: And there’s sort of like yeah, check it out. This is us. Has that altered your communication with people, or I don’t know. Could you say a little bit more about that?

JANE: I’ve been pretty quiet because I try not to communicate too much when I’m in an agitated state because I don’t wanna say anything I don’t mean, number one. I don’t think anybody should be experiencing this. It does not bring me any joy that so many people are suffering and fearing anxiety. Some of the people that are closest to me have very serious mental health issues, and it is having a horrible effect on them, and I am very sensitive to how that population can be triggered. And I did accidentally trigger one of my people, and that’s just a terrible feeling. I don’t wanna do that. But I do want people to open their eyes and realize that what they’re experiencing right now is something that is temporary for them. And it has been rather permanent for many of us. And I hope that they understand it better and then do something. Take some action to make the change that needs to happen.

JILL: I hear you. It’s interesting to think about. We just talked to Bob Coombs before you.

JANE: Mmhmm.

JILL: And it came to mind just the thinking where I wanna pick up a little bit from where our conversation with him and see where it takes us. We often say that we don’t want people to be in those scenarios where they try on a disability, but not often. We never want people to try on a disability: Oh, check out what it’s like to be in a wheelchair! And then when you’re done trying it, then you can be like, oh, thank god I didn’t have to live that life, right? So, we’re kind of in a scenario that we would not support in in general. And people when this is over, they get to go back to being not isolated and not having those experiences. So, what do you…I mean, I’m just gonna throw that out there. I haven’t fully formed my thoughts or my questions around that. But I personally think there is a risk related to that, of experiencing it and then being so relieved without the action that you’re talking about. 

JANE: Right. Without ever thinking about it again.

JILL: Mmhmm.

JANE: And some people are going to do that. That’s just how humans are. When the problem is over, they move on, and they never think about it again. It just becomes something maybe they talk about at a party down the road. Like, oh! Didn’t that suck when we couldn’t go out?! Yep. Good thing that’s over. And that’s it. It’s just an afterthought. But what that needs to happen is that legislators really need to talk us. You know the saying, “Nothing about us without us.” So many of these Medicaid policies and regulations are made without us on board. Medicaid is a, I feel like Medicaid is this machine that is being held together with duct tape, kind of like my wheelchair is. Even though I’ve had it for less than a year, I have parts of it that are held together with duct tape. That’s a separate issue altogether. So, do I think we need to get rid of Medicaid? No. We need to reinvent it though, and we need to reinvent it in a really compassionate way because there are many people that when they hear “Medicaid change,” or “We need to get rid of Medicaid,” that is gonna trigger them to go into a very unhealthy place. And we don’t need that. We have too much of that as it is. We need to do it slowly and compassionately and reinvent Medicaid so that it actually serves the people.

Yeah, there’s a lot of Medicaid waste as far as spending. And I can point out a lot of it. Actually, whenever Medicaid funds are spent on me, in what I believe is a stupid and wasteful way, I post about it. Like, “Hey! Hey, Facebook people! I just want you to know about $500 of your taxes was just wasted on doing some bullshit for me that I didn’t need and that was not necessary, but it’s a requirement.” And I am quite certain that every person in a similar situation that utilizes these Home and Community-Based Medicaid waiver services can also provide a list of things that are spent, money spent on them that is not necessary or not moving them forward, not supporting them. And if we just start there: What am I getting that I don’t know? If we just pleased everybody getting these services, I bet you that would save a lot of money, if we took action on those services that we don’t need. I do not need to go to the doctor every year to confirm that I have a permanent condition. And that’s just off the top of my head.

CHRIS: Are you optimistic that, or pessimistic, or what’s your thoughts about this idea that we are having a cultural pivot here? And as we’re saying together, the three of us, we have some concern that things will go back to normal or that it might even be worse, that there’ll be more social distance, right, or more sort of philosophical distance between the experience of disabled people and non-disabled people. Are you optimistic that we have the culture to do this kind of rebuilding work after a pandemic like this? 

JANE: I’m withholding having an opinion on that until November. I am just doing my best to focus on what I have control over and taking the best care of myself and my care team as possible, pooling our resources, getting enough sleep, exercise, eating right, and being supportive in as many ways as I can and voting in a way that I think is going to make my life more sustainable in the long-term, and hoping for the best, but preparing for the worst. And maybe we can have this conversation again mid- to late-November.

JILL: Yeah. So, that’s interesting. You’ve talked about social media and how you’ve always, you use that as a platform. What news are you consuming outside of social media?

JANE: I pay attention to my local news because I think it’s important to stay on top of what is happening in my county and my state. And then after certain briefings are done on a more, you know, when the president talks, I can’t listen. I can’t watch it. But what I do is I wait a few hours. And then on YouTube, I will watch the video clips of the doctors talking after he talks. Because listening to his voice does not make me feel better. And so, that’s how I’m managing my mental health. I’m listening to the doctors. It’s the Surgeon General, and I forget the title of the other doctor, Fauci. They both sound like sensible people. I read the CDC reports, and I just keep doing what I’m doing.

[bright electronic music break]

CHRIS: There’s a way in which the media refers to older people and disabled people as the ones who are gonna get hit the most hard. And we’ve been talking about that coverage as sort of, you know, we become a sort of cultural buffer for people, right? Another couple folks have been using the canary in the bird cage analogy, right? And so, I was just curious about whether or not that’s gotten into your thoughts, or if you’ve been able to sort of react or think about any of that stuff.

JANE: Yeah, absolutely. I don’t think we are a priority. I don’t think we’ve ever been a priority. And if I start to develop symptoms that, and yeah, we think maybe I have it, I’m not going to the hospital. I’m gonna stay home. Because I don’t think I would be tested. My natural body temperature is a couple degrees higher than normal. So, I’m not gonna risk getting quarantined with a bunch of people who really do have corona if I’m just sick, you know? I can’t help having these dark thoughts creep in about Nazi era crap. You know what? Not only am I not gonna go to the doctor, because I don’t wanna be quarantined, I don’t want to be a test subject either. And whatever’s gonna take me out is gonna take me out. And it’s gonna be right here in my own home on my own terms.

I have gone to the doctor. I’ve gone to the emergency room a few times over the past 20 years for things that had absolutely nothing to do with my disability. I burned my eyeball doing dumb shit. It’s fine. [laughs] You know, things happen! And each time, they tried to admit me because they ran some test. They didn’t come back normal. And I said, no shit. I told you it wasn’t gonna come back normal because I’m not! Just gimme my eye drops or whatever. I had to go through a bunch of stuff and sign papers that I’m leaving the hospital against doctors’ orders. And I’m very glad that no authorities were brought in to give my caregivers and me pushback. I have no power of attorney. I have a big old mouth. I don’t need anyone to speak for me. But I do have caregivers that need to take me here and there. And I was afraid a few times that they were going to be hassled because I of my choice to leave. So, I feel more, I am more afraid of the government and the medical professionals than I am of any virus. How messed up is that?

CHRIS: Yeah. And that’s something that you’ve unfortunately learned, right? That’s a learned behavior.

JANE: Yeah!

CHRIS: Yeah.

JILL: It really makes me sad because the people who go into the medical field, [chuckles] I don’t…I tend to think that they’re doing it for the right reasons, a majority of them. And so, where is the education breaking down? Where are the systems breaking down as people are learning in our schools, both when they’re younger, you know, like what is…? I always think if we’ve gotten to this point, there’s something way down the line before then that’s we could have done something differently. And so, if these doctors and nurses and medical providers aren’t treating you and listening to you, it’s happened long before then. And that’s a bigger systemic issue.

JANE: It is. I think ego has a lot to do with it. They get their degree, they get their little uniform, and all of a sudden they know more about me than I do. And it’s sad. I’ve joked many times that if I accidentally severed my leg and I went into the emergency room and said, “Hey, I need my leg sewed back on,” I would bleed to death while they went to run their tests, trying to fix my diagnosis before they would even get my leg reattached. And I believe that to be true.

JILL: Yeah. And that’s in times when we don’t have a pandemic.

JANE: Exactly. There is no way in hell I am going to a doctor’s office or a hospital for a very, very long time. And right now, it is time for me to get my annual physical to just see if maybe there’s been a miracle, and I’ve been healed and I no longer need Medicaid services. And I’m not going. I am not leaving my house unless it’s on fire. And so, hopefully I won’t lose my medical coverage.

CHRIS: You know, you often, because of your work and your art form, you often bring people smart laughter. And we so appreciate that. Have you found moments of laughter or joy in this weird time?

JANE: I have. Right before this chaos began, I started a secret project, and I intend to give it a year before I come out with the project. And it’ll be well worth the wait. And it has given me something to focus on that is positive and light-hearted. It’s not life or death, so it’s a good mental vacation to work on this a couple times a week. And it’s been really hard [whispers] to keep it a secret. [regular voice again] But it’s going to be worth it for everybody in the long run because I haven’t been able to get out to do gigs. And I may try to set up, not that everybody is learning about how to use this kind of technology, I miss doing the burlesque performance. So, maybe I can rig something up and do a YouTube show just to just give everybody a break from reality for a few minutes, you know.

JILL: Yeah, I really appreciate, Jane, how you’re focused on people’s mental health. And I think that sometimes, some of us don’t realize that other people are struggling with the same things or what the tactics are or that your thoughts and your fears and your anxieties are shared by other people. And sometimes, just hearing someone who is as well-spoken and thoughtful as you are to just validate that is really important. And then also to offer some tips that work for you. You’ve already mentioned just your process of listening to the news and really trying to gain it sounds like a lot of what your choices are around gaining control for yourself. And I’m wondering if there’s anything else that’s working for you that might be something that other people could try in this, especially now, but then moving forward as well.

JANE: Getting enough sleep, exercise, don’t binge on a bunch of junk food, and read. Let me tell ya. I put [inaudible] a long time ago. So, whatever you need, whatever you need to do right now to get through right now, nothing is normal. Whatever habits or routines we get into right now to maintain physical and mental-emotional homeostasis, just do that thing. And then when it’s over, we can reevaluate and see what we wanna continue and what we don’t want to continue. Everything I’ve said that I’m doing and practicing is true, but I don’t wanna give the impression that I’m angelic. Because I will have my moments where I’m like, hey, I’m gonna go in here and get all the fuck at. Because if I’m gonna be supportive and sensitive and listen, I have to get all of my frustrations and anger and disappointment out. And I will just have my own solitary cussing session, and then I feel better. And then I can go back to being supportive. So, get all your fucks out ‘cause when you keep it all in, you’re not gonna feel good.

[bright electronic music plays till the end]

CHRIS: Thanks for listening. Be well, keep your distance, send us your comments, your questions, and your submissions for Oaklee Thiele to hello@DisArtNow.org. Please make sure to follow the My Dearest Friends project on Instagram, Facebook, and at DisArtNow.org. And thanks again to the Ford Foundation for their support of this work and to cat enthusiast Cheryl Green for the transcription of this podcast.