Interview with Kimberly Parsley, June 9, 2022

THOMPSON:

Hello, my name is Mack Thompson, and today I am interviewing Kimberly Parsley for the Disabled in Kentucky Oral History Project virtually over Zoom. The date is June 9, 2022. Kimberly, I’m happy you’re here.

PARSLEY: Thank you. Thank you so much.

THOMPSON: Of course. To start things off, would you feel comfortable sharing a little bit about yourself?

PARSLEY: Sure. I am--I’m Kimberly Parsley. I was born in Butler County here in Kentucky. I’ve lived all my adult life in Warren County in Bowling Green. I went to school at Western Kentucky University and met my husband there. We got married after we graduated, and we just stayed in Bowling Green. I am blind due to a very rare genetic disorder--

not one that anyone in my family had. It just--it’s called a new mutation when it just pops up, and so we didn’t know to be watching for it. So I lost my sight completely when I was fourteen, and I was mainstreamed at Butler County High School, and then graduated from there, and then, like I said, I went to Western and worked for a while. I worked in their University Relations department, and then I quit work to raise my son. That would’ve been in 2008. And I--and then I had a daughter in 2011, and about the time I was ready to go back into the workforce when she started preschool,

I had another--the disease I have affects several areas of the body and I had to have surgery on my spinal cord, which left me without the ability to use my left hand. I had to relearn--I--my cognition was fine and I could speak fine, but I had to relearn everything else, how to feed myself, how to walk. I had to relearn everything, and that took--it took years. And about the time I felt that--I never regained the use of my left hand. So I was a writer, so that meant I couldn’t type on a keyboard, so that was hard--still haven’t completely overcome that, figured out how to manage that. And then about the time I was ready to go into the workforce again after that, I had another

surgery on my brain stem, which left me with profound balance problems, and at that--that was in 2019, and at that point, I just decided, “Whatever I do is going to be done from home.” (laughs) So--and then that gets us here. So I’m working on a disability podcast through the Advocado Press, doing that for them as a volunteer. They are the press that published the Disability Rag, a monthly magazine from 1980 to 2004, which was a very influential publication for the disabled community. So I’m proud to be working with them. Doing some other volunteer things for the nonprofit group that supports people with the disease I have, and then, of course, it is summer right now here in--so I am full-time

mothering. My kids are older. They’re ten and thirteen. But they still--you know, they still need a lot. They still need and want my attention, and I’m privileged to be able to stay home. I mean, I’d rather be working, obviously, but I am privileged to be able to not have to struggle to find childcare for them or leave them alone, so I’m at home with them. And that brings us up to this very day, so.

THOMPSON: Thank you for sharing that. I guess, like, would you--well, I guess first of all, would you say that, like, you identify as being disabled or having a disability? Like, how do you self-describe your relationship to disability? Or do you just, like, identify as being blind, or--what terms do you use?

PARSLEY: I mean, I identify fully as being blind. I am blind. I feel--

I mean, you know, some people prefer visually impaired, and that's fine. But for me personally, I think a lot of people interpret visual impairment as meaning, "having some sight," and I do not have any sight--not even light perception--so being blind is just a more definitive way of describing. And I say I have multiple disabilities now because not having one hand to use does--I mean, it is limiting, and so that--I usually start out with blind because that's the real biggy, and then I say, you know, multiple disabilities with the right hand and the balance problems.

THOMPSON: Thank you for sharing that. And I was wondering as well, like, you talked some about, like,

having children, and, of course, you spend a lot of time with them. I was wondering if, like, your blindness has impacted your relationship to, like--with your children in any way, if that's a question that you feel comfortable addressing.

PARSLEY: It--I--before I made the decision to have children, it worried me that it would. But because I was blind when I had children--so I am the mother they have always known. They did not even know that I was different until they were probably four or five, and they didn't realize that I was different from other moms until then, and by then, well, I'm just, you know, Mommy, so it didn't make any difference. There is a book that I am featured in--

I'm one of many people featured in that was published last year called A Celebration of Family: Stories of Parents with Disabilities, and it is about parents and their--about people with disabilities and their parenting journey, primarily from Kentucky. I think almost all of the stories are from Kentucky--parents who are from Kentucky, with a wide range of physical disabilities and cognitive differences. So it's a really great book, and I don't just say that because I'm in it. But also I wish it was a resource that had been available to me because I was terrified as a blind parent, and--but--I mean, my children are great. They have more empathy, I think, because

they see my struggles. They understand my struggles. But then, you know, like, one of the things I say in the book I referenced is my daughter said to me one time, "Mommy, I'm--I really wish you could see," and I thought, "Oh no, here it comes. We're going to--you know, we're going to have this conversation." And she said, "That way you could see how cute I am."

THOMPSON: Oh. (laughs)

PARSLEY: And that's just--(laughs)--that's just how she is. That's just her personality, and it--you know, she was also, like, little at the time, like, seven, so, you know, when they're that age, it's pretty much all about them. I mean, things are harder. My daughter really felt the need to test gravity at every turn. She was always jumping off of things. I think--when I had two kids, just going

outside to play was--it was--it's an exhausting thing because, you know, it's like going back and forth because I can't see them, so I can't just stand in one spot and look at them. So it's run to one kid, make sure that she hasn't climbed onto the deck rail and is trying to jump off, go to the other kid, make sure he hasn't fallen off the swing. You know, it's just back and forth, and it was exhausting, and I feel like probably for about, I don't know, eight years there, I was just living in a low-level panic attack pretty confidently. But they're older now. You know, they can read. That was nice. They can read stuff to me. When they identified colors, they could tell me what colors things are. You know, so we--we're a very close family, lots of hugging and things, lots of talking about things, so I think parenting is hard no matter--I mean, it's just

a really hard thing no matter what you're dealing with. Parenting is extremely difficult. It's the most rewarding job, but it's also the hardest job.

THOMPSON: Thank you for sharing that. So how is--speaking of, like--how is accessibility in, like, Bowling Green? Is the city accessible to you? If--is--are there ways it could improve?

PARSLEY: I'm trying to think of any way that Bowling Green is accessible. They're doing better with sidewalks, I think. Public transportation is nonexistent here. I don't care what anyone tells you, there is no public transportation here. There are some attempts at--

I don't know. There's been nothing that I found helpful in terms of public transportation. I--maybe, I think, for people who have to go to medical appointments and things. I think there may be things, you know--there's ways to get an ambulance or--or to get a ride to medical appointments. I don't use that. My husband and I just have to, you know—he--he has to work his schedule and use a lot of his vacation days to take me to appointments. But no, no, I don't think Bowling Green is accessible at all, and I love Bowling Green. Don't get me wrong. I--I live particularly on a country road off a--kind of a main road, so, you know, there are no sidewalks on the road

I live on, but it is a county road, and I--I’m aware of that. Still, I love it here. I mean, I do love living here. It's beautiful. I'm fifteen minutes from, you know, everything I need in Bowling Green, but yet, you know, there are deer and turkey that walk through the backyard, so I feel like I have the best of all worlds except accessibility. Sometimes places have Braille menus. Most times, they don't. Honestly, I haven't gone out to eat because of the pandemic in so long, I really haven't kept up with that kind of thing, so.

THOMPSON: So, like, you discussed some, like, medical institutions and, like, transportation to them, but how, like--how are your experience with the institutions

themselves? Like, are they useful? Are they accessible? Like--

PARSLEY: No, I have--I say often that nothing makes me feel as disabled as going to the doctor, and that's--be it here in Bowling Green, at Vanderbilt, where I get my care, nothing makes me feel as disabled as going to the doctor. It is a--it is a horrific establishment that we put people through. It is about monetization and efficiency, and it is just a dreadful experience all the way around. I have a fear of needles. I have to ask

to--I have to lay down or else I will pass out, and we have found this out--(laughs)--the hard way many times. Sometimes I ask to be--I ask, "Is there a room where I can go and lay down?" Some places don't have that. Or you get the sense that you're being dramatic. You aren't believed. You are--or you're putting someone out. You know, you're, "Oh, how--how dare you interrupt the flow of people through this moneymaking operation by your bodily needs." Doctors don't--I don't think most doctors, they aren't care--they don't care about the whole person. It's--they care about their one little slice of your body. If it's

--if it’s an eye doctor, they're not interested in anything else that could be going on at all, never mind that it took great lengths to get you just to your eye doctor appointment. They're not going to address anything else, even at your primary doctor. Most of the time, a primary doctor is simply a traffic cop to send you onto a different doctor, which means trying to find another ride to another appointment, or having, in my case, my husband take off another day from work to take me to another doctor, who might well send me to a different doctor. It is--I don't--I don’t know that I can say enough negative things about the modern healthcare system. It is dreadful. It is horrible and it is expensive, and our outcomes are truly abysmal.

THOMPSON: I'm sorry you've had those experiences.

So do--how about, like--I mean, you talked some about--earlier also you mentioned, like, the COVID-19 pandemic a little bit, and I would love to know in more detail, like, if you think that that's had impacts on you or, like, on the broader disability community, and if you would feel comfortable sharing some of that?

PARSLEY: That's an interesting question, and I--I suspect people with different disabilities will have different experiences. So I can only really speak to my experience, just keeping in mind that it will be different for other people. As a blind person in a--living in a town that does not have public transportation, I am often

very isolated. When the COVID-19--the COVID pandemic hit, everyone was isolated, and so things were done to bring people together. I mean, you know, two-plus years in, we all hate Zoom now, but in the beginning, Zoom was a way that we could communicate with people, and we found ways to do that. We found ways to communicate with each other over--over Zoom, and we--you know, there was, like, Happy Hour Zoom parties and, you know, all manner of things. So those were things that I could participate in if I wanted to. You know, my--my kids did school from home. That was, of course, not ideal, but it was possible, so--I can get my groceries

delivered now. Two years ago, that was not a thing--I--I--I scoured the Internet. I did everything to try to find how to get my groceries delivered. It was not a thing that I could do. Now, it's done all the time. Lots of people have their groceries delivered. That is a huge timesaver for me, and it's just a hassle that I don't--I don’t have to deal with anymore. So that's been a positive. Lots of pharmacies realized how they had to do better to fulfill their role in the community, and how they weren't well-serving people with disabilities because no one could get to the pharmacy, so they realized here they--this was a burden they had been putting on--getting to the pharmacy was a burden they had been putting on many people who were disabled or chronically ill,

but when it came time--when no one could get out to the pharmacy and--and no one could get there, suddenly they can figure out how to manage to get people's medications to them. So there has been definite benefits. I will tell you, in the beginning, it was terrifying when--I believe they were called the most vulnerabl,e where--and--and I'm not sure how much this actually happened or how much of it was just fear-based, fear-based media about how healthcare workers were having to decide who got care, and that was terrifying, because I felt like as a blind woman with multiple disabilities, if I came in with COVID and needed care, I felt like there was a real chance someone who was able-bodied would be given

that care over me, because the thinking would be that my life was less valuable than someone who was whole. So I mean, that was very terrifying. I stayed inside. We were very, very careful because of that. We--my family and I were very careful. We did not interact with anyone for, you know, months because of that fear. But, like I said, also some very positive things came out of the pandemic that definitely make my life easier now.

THOMPSON: Do you feel like there's resources or, like, being--going to be taken away or, like, are dwindling as, like, places start to open back up, or--what--do you think that they're going to, like, stay, like, overall now that people

realize these are a need?

PARSLEY: No, I do worry that that is what will happen, because in a capitalist society where everything is designed to make money, getting people into a store where they will find more things that they want to buy, I feel like that will override any other impulse. So yes, I do worry.

THOMPSON: Thank you for sharing that with me. So do you have any, like, experience with social or government resources for people with disabilities?

PARSLEY: I'm sorry, could you ask that again?

THOMPSON: Sorry. Do you have any experience or, like--with, like, social and government resources with people with disabilities--or for people with disabilities, or is that

something you--

PARSLEY: Yes, I do. When I lost my sight, I--which was in 1990, my mom contacted, just looking through the Yellow Pages--she found something called the Department for the Blind. This was what it was called at the time. And so she called them, and they were a huge help directing me to get the skills that I would need. And after graduating from high school, I then became a client for the Department for the Blind, which helped people who are blind to go on to get postsecondary training. So they helped me get through college, helped me get the equipment that I would need--I needed a computer at the time--and to help me get the skills that I would

need, and that was a hugely positive experience. I cannot say enough good things about people who work for the state in vocational rehabilitation, those kinds of services. They--they, without exception, for me have been just wonderful people who care about their jobs. They care about the people they serve. Same thing at--I read a lot, of course, on audio, and the Kentucky Talking Book Library, they are a wonderful organization. They care about the people they serve. So I've had great experiences with them. More broadly, since

I do have a rare genetic disease, it was studied--it's being studied, I think, still--at the National Institutes of Health. That experience was--it was vastly different from the for-profit healthcare that I get now. It was much more patient-centered, even though it was a research hospital, and, you know, the broader idea of researching an illness is--I think their--their core goal, they still--the emphasis was largely--not always, but largely on the individual, and so that was definitely a positive experience that I had. Actually,

I had just gone--I started going to the NH when I was twenty years old and I'm having terrible headaches. I was in college, and--that we found that I had a massive brain tumor. Like, I believe they said golfball-sized. That was, you know--try to find something to compare it to. They said it was golfball-sized. So they talked me through getting from here--they talked to my mom through getting me from here in Bowling Green, where they did not know how to treat this kind of tumor, to Bethesda, Maryland, and really it saved my life. I mean, there was no way. It--had I not just gone to them and known about this, I would not have survived that brain tumor. So overall, I think people who work in services for the disabled are just stellar people, doing

a great job. This thing--I don't think we do a good enough job telling people how good these services are, how helpful it is. There are a lot of disabled people out there, and if you're not disabled, just wait. You will be, either temporarily from, like, a broken bone or, you know, recovering from a surgery or being pregnant. We will all--we'll all get there at some point. So I just wish there was more financial support given to these organizations for disabled people, and I wish when people went to vote, they would keep that in mind. I would say when I go to the zoo with my kids, I have to use a wheelchair because of the balance problems. I just can't walk that

much. And so my husband pushes me in a wheelchair. There was a very nice man who, you know, held back just so that he could hold the door for us to get through this one place, and I had the thought, "How does he vote? He is such a kind person to me individually. But we are all individuals, and do these people who are doing individual kindnesses, do they vote in such a way to show how much they care?" Because they do care. They do care. I wish that in terms of their citizens--of all our citizenship, we showed that caring rather than just on an individual level. That may have not been where you wanted that question to go. Sorry about that.

THOMPSON: No, no, that was totally important information. Thank you for sharing that. So

yeah. Obviously you wish--you want people to, like, vote, which is really important and, like, vote with disability in mind. What else do you wish, like, people that were able-bodied or just abled in general, like, knew about disability? And what do you wish that they did, like, to support us, or--you know, you can say that question however you want it. I fumbled that, but--(laughs)

PARSLEY: Yeah, no. You know, it's the kind of thing I'm not sure I think about just because I'm just like everyone else, doing my day-to-day things. I--what do I wish that people would keep in mind? Oh, I wish that they would keep in mind that everything is political. I mean, people say

things like, "Oh, I don't want it to get political. I don't want to be--" But it is all political because we have a government of and for the people, and--so it's all about people. Politics is about people. Government is about people. There is no robot in Washington. It is all--or Frankfort. It is all people. And I wish--it's not like the weather, you know? And the economy, okay? It's not like the weather. It's not just this amorphous force. It is people. And I wish that people would be serious about reclaiming their power to make these changes, to make life in America what we want it to be, because we can do that. I--and I say that because I

think people overwhelmingly are good. One on one, people are good. They will help. Americans are great people. Kentuckians are wonderful, wonderful people, and they will help. I just wish that they knew how much power they had, that they would reclaim their power to be good and to do the right thing. And in terms of disability, I think it has to come back to healthcare. We have got to do better. We've got to do better for ourselves. We've got to do better for our children. It doesn't have to be as horrible as it is, and I know people are afraid because you go to the doctor and, you know, you want--you're told you have cancer. You want to be in America because

you feel like that's the best place, and I understand that. But it's not the truth because our health outcomes are--(sighs)--well, if you're a white man, you're probably in good shape, but if you're anything else, you should worry because we're not getting great health outcomes for women, for minorities, for disabled people, and we could do better. And I do think it's a system that may need to be ground up, revamped, and that's hard to do in--that's hard to do. Is there any--in terms of--what was your question again? I don't think I answered your question fully.

THOMPSON: Well, you answered part of it. I just kind of, like, combined questions more than I should've with that. I guess--

like, I did ask about, like, what you wish, like, people would, like--can combine (??) what they do, but also, like, furthermore, what, like--like, what do you wish people knew about blindness and with disability, like, just extending upon what was already asked--that you already answered, I mean.

PARSLEY: I wish that people did understand that a disability is oftentimes not just one thing. I mean, it can be. I mean, you can be blinded from an accident or something. But you can be--you can become blind from retinitis pigmentosa, which also affects your hearing. So--and, you know, like me. Yes, I am blind, but I also have another disability. So what--one thing I wish that people did know is, you know, don't be embarrassed

that you'll do the wrong thing or say the wrong thing. I trust that most people come from a space of love and wanting to help, and I think so many times, they don't, or they avoid people with disabilities because they just don't know how to help and they're afraid that they will offend someone by doing or saying the wrong thing, or they'll be embarrassed because of something they didn't know. And I think--you know, personally as a blind person, I embarrass myself all the time, just all the time, so that--you know, we're all in that. We all embarrass--I promise any nondisabled person, you can't embarrass yourself more than I embarrass myself all the time, so, you know, don't worry about that. And

you know, every person--every disabled person is different just like every person is different, so, you know, just come to us from a space of compassion and empathy, and you cannot go wrong there. If someone is offended by something that someone said, well, that's their choice to be offended, and they're kind of a jerk for that. That's not on you. That's on them--unless someone is being purposely, you know, malicious or a jerk, and there are those people out there, but that's a different thing.

THOMPSON: That's really important words of wisdom there. Thank you for sharing that. And yeah, I think it is important--(laughs)--to, like, recognize that.

So we talked some with you about, like, people overall--or especially abled people that are not disabled to know and do, but, like, for the more kind of, like--what advice would you give someone who is losing their vision or recently became blind, maybe, and is trying to, like, go through that process of, like, understanding themselves in terms, or navigating the world?

PARSLEY: It's--I--it's--I think I would tell them it's hard. It's hard. Allow yourself to feel what you feel. It's hard. It's doable. A wonderful life is out there. Is it going to be a harder life? Yes, probably. Life is just not set up for people who are disabled, unfortunately. And that's

something many disabled groups are pushing for. It's called the social model of disability, which is, you know, we are all different. Society needs to conform--society as a whole needs to conform to the fact that people are different. We are--society is made of people, and we are all different--rather than viewing disability as something that should be cured, because if you say disability is something that should be cured, then a disabled person, therefore, is a failure, and that is--that's some bullshit right there. But that's something that we have to keep pushing for is that social model of disability. I--and I do talk to people who are losing their sight or becoming disabled, and it is hard, but it's easier now than it was thirty years ago. When I was in college, I had to--(laughs)--I had a constitutional law class, and I believe it had

thirty-four cassette tapes, so if I needed to find a spot, I had to just pick a tape at random and see what chapter I was on. And, I mean, you're talking thirty minutes just to find the spot where I needed to be reading, so--I mean, and now we have--you know, in our iPhones, we have the computers that we need on our iPhones to be able to--or smartphones to get the book and go right to the place we need to read. So I didn't do anything in college but study, really, just nothing but study. It is hard, but it is doable, and that's--I--that is what I would tell someone who is--that is what I tell people that I am talking to. And it's okay also to have those feelings, and there are a lot of them. I mean, there's anger. There's denial. There's frustration. You'll have all those things, and you may have

all those things during a day. I--and--but also other people are going through it too, and other people are also going through different terrible things, and we just have to keep going forward. But give yourself the grace and the space to make mistakes and to learn.

THOMPSON: That's a really important message. Thank you for sharing that. Is there anything that I--that you'd like to talk about that we haven't discussed yet or haven't discussed in enough detail yet?

PARSLEY: You know, there is something--and I'm not really sure what a box this would fit into--but

when I lost my sight in the nineties, there was a push to mainstream all disabled people, and what that meant was instead of going to a school for the blind, I went to my public school--my local public school. And I'm not saying that that was wrong. I'm not saying that's a wrong decision. But I do not have a lot of the Braille reading skills that I'd like to have because that just wasn't--and, now, part of that is because I didn't lose my sight until fourteen, so when you--if you're--you lose your sight younger, you learn Braille either in lieu of or along with your print reading, you'll be better at Braille. But I do think Braille is important, and I think

some of those skills that one might learn at a school for the blind, I did learn them eventually, but it took a lot, lot longer. It was a lot harder, and I think that we need to--again, it is a--everyone's different. It's a choice for everyone. But I don't think we should necessarily have a push to do things one way, a one-size-fits-all approach to educating disabled kids. I think it needs to be something that's looked at in terms of what the parents want and can offer, what the school can and should offer, and what the needs and abilities of the disabled student are. And again, this is not something I've--

I don't have a thesis here because I'm just realizing how much I--there were some skills that I wish I had, like Braille, for--just for an example, that I don't have. Disability is not a monolith. It's not a--everyone is different. Every blind person is different, and I'd like for us to be allowed to be different instead of, "Okay, this is how we handle blind kids." I'm not sure that's a real cohesive--I'm not making an argument for anything. It's just something I think we need to readdress as, you know, as we go forward with people who are disabled.

THOMPSON: So are you saying that you feel like

the option should've been--like, more present, like, instead of pushing one way or another? Like, empowering you to--like, when you were younger to, like, pick up the options and have the benefits? Or, like, that you think, like, public schools should have more resources put into that? Or do you feel like--

PARSLEY: Yeah.. Like I said, I'm not sure what argument I'm actually making. It's just something I've been thinking about a lot lately. Yes, I obviously--public schools should have more resources. In the nineties, when I was growing up as a disabled person, it--the message that I got was, "Grow up as a blind person, but be as nondisabled as person. Just pretend you're not disabled," basically.

It was--that--it was, you know, earn, earn money, be a contributing member of society, you know, as though money is the only way to contribute to society, but that was definitely the message that was given then--and possibly still now--and try not to be blind, you know? Work harder to be considered for half as much. And it's not just--this is not--disabled people are not the only people who have to deal with this, obviously. And I think because--once I had the multiple disabilities happen, I personally felt some shame about being disabled that I never should've had because I never got--from an institutional--like,

a societal standpoint, I never got the message that I was okay as I was. And I hope we aren't still giving that message to our disabled kids because they are okay as they are. Are they different? Yes, they're different. Are they worse? God, no. God, no. So I think--the point that I'm making is that there is that internalized ableism even when you are disabled, and I would like to see us doing everything we can to turn that around, and I'm not sure, as a society, we here are addressing that as well as we should.

THOMPSON:

Thank you.

PARSLEY: Does that clarify--

THOMPSON: --yeah, that definitely helps. Thank you for sharing that. So how can--but like--I know that you mentioned, like, the book that you were a part of. Are there any other things like that that you're involved with that you would like to, like, mention or, like, just, like, stuff like that that--

PARSLEY: I would totally tell you about the podcast, but it's--we're just now working on the first episode, so I have no idea how that's going to go. So I--mainly just the book right now. Just, yeah, just the book. A Celebration of Family: Stories of Parents with Disabilities, and it's put

out by the Advocado Press, and that's, like, Advocate--Advocado.

THOMPSON: And what's the podcast going to be called?

PARSLEY: Right now, it is tentatively called Demand and Disrupt: The Disability Podcast.

THOMPSON: That's really exciting.

PARSLEY: It is exciting. I'm learning a lot. They tell me that once you get several podcasts under your belt, you'll go back and listen to your first one and cringe, so I fully expect that to happen. I hope I get better at doing it. But it's been exciting, exciting to talk to lots of people. So I'm hopeful. I'm hopeful.

THOMPSON: Is there anything else you'd like to add, like, about you?

PARSLEY: I don't think so. I mean, I think I--I think you've been pretty thorough in your questions. You're talking to people with several--many different kinds of disabilities, I assume,

right? That's--

THOMPSON: --yes.

PARSLEY: Okay, great. Great. No, I think that's--I think you've covered a lot of things, so.

THOMPSON: Great. Well, I'm going to stop recording now, if that's okay.

PARSLEY: Yep, that's fine.

THOMPSON: All right. Thank you for talking with me.

[End of interview.]

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