Episode 11: Blindness Mentor

5 months ago

Jerry Wheatley is a wonderful person who I have given the worst superhero name ever "Blindness Mentor".

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Send comments and questions to [email protected]

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.


Kimberly Parsley 00:01 Welcome to Demand and Disrupt, the disability podcast. Here, we will learn to advocate for ourselves and each other. This podcast is supported with funds from the Advocado Press, based in Louisville, Ky. Today's interviewee is Jerry Wheatley. Jerry has been a mainstay in Ky's disability community for decades. For the past 30 years, Jerry has worked and volunteered in the field of assistive technology. He has served on the Assistive Technology Loan board, the Center for Accessible Living board and the Hart Supported Living board. Jerry retired five years ago, but he continues to fight for people with all disabilities. He continues to fight to make private insurance, Medicaid and Medicare pay for hearing aids and ramps and he believes that the income limit for all people with disabilities on SSDI should be the same, regardless of disability. Jerry hails from Raywick, Ky, but he now lives in Bardstown with his wife, Lee.

Jerry is also one of my favorite people in the entire world. Hey, everybody! Welcome back to another episode of Demand and Disrupt, a disability podcast. And today, we are joined by Jerry Wheatley! Hey, Jerry, how are you?

Jerry Wheatley Hey, Kim. I'm doing just fine.

Kimberly Parsley Thank you for joining. I had to do a little arm twisting. You’re, you're very shy. Very, very shy, quiet, unassuming guy. Aren’t you?

Jerry Wheatley 01:28 That's me. Absolutely. [laughter]

Kimberly Parsley 01:32 So, I met Jerry, for our listeners, I met Jerry when I was a brand new, little baby blind person. I had been blind about three months and when they told me that, to go back to school as a sophomore, I would have to go to… It wasn't even the McDowell Center; it's the McDowell Center now, but it was just the ‘Rehab Center’ then, which I thought was a drug place and not where I needed to be. But it turns out it is to rehabilitate people who are newly blind. And I hated it there and I wanted to go home and, like I said, I'd just been blind for a few months. And I met you and Lee there and, I remember, you stayed up with me for hours that evening – you and Lee – to, like, after midnight, and you taught me how to use a computer, so I could go back to school. Do you remember that?

Jerry Wheatley 02:32 I do. Yes, I remember. And working with you was kind of easy. All you needed was just a little bit of encouragement and you were gone! You were ready to go.

Kimberly Parsley 02:43 And, see, I did not know that lying was one of your skills. And you just did it so well! You just, you just did it right so well.

Jerry Wheatley I try. [laughter]

Kimberly Parsley So, I always refer to you as my blindness mentor, which is just, like, the absolute worst superhero name ever. Isn’t it?

Jerry Wheatley 03:03 It absolutely is; I'm kind of embarrassed.

Kimberly Parsley 03:08 But I don't know where… I tell you, you really changed the course of my life! If I had not met you and Lee and you all helped me to know that I could do things as a blind person, give me the tools I needed. And I just, I just don't know what, I just don't know that I’d have done it. So, tell me a little bit about Jerry and your blindness journey.

Jerry Wheatley 03:31 All right! Well, [garbled] retinitis pigmentosa. I was diagnosed when I was about eight years old and I was considered a very high partial, legally blind, when I was about 10 or 11. But again, legally blind is so, there's such a wide range between being legally blind and being totally blind. It's, it's incredible, the difference. I grew up on a farm and went to public school. All but my last couple of years, I went to the Ky School for the Blind. Again, my vision was still pretty good. I was legally blind, but it was good. And after graduating from Ky School for the Blind, I went to college, a junior college, for a couple years. And this is back in the 70s before PCs. But I worked on, my degree was in computer programming. But after I graduated, I didn't want to do that, I wanted to farm. I went out and farmed until I was almost 30 and I lost most of the rest of my sight – not all of it, but quite a bit of it – where I could no longer drive the tractor. So, I went back to school, to college, went to Western Ky University and…

Kimberly Parsley Bing! Go Toppers! Right? [laughter]

Jerry Wheatley Nothing wrong with WKU and all those darn hills and steps! [laughter] And still was interested in computers and by then we had the PC; at least we had the Apple. And, you know, from there, I wound up eventually working for state government, here in Ky, with an organization called the Ky Assistive Technology Services Network. And, basically, from about mid-30s up until, you know, mid to late, late 30s, I was totally, lost all my sight and was totally blind, so. I retired, maybe five years ago. I'm now 65 and live in Bardstown, Ky, on a little baby farm. [chuckle]

Kimberly Parsley 05:51 You know, I remember calling you one time when I was at Western, I got to, went to Western – by far the best school, you know, in the state. We will hear nothing to the contrary, no opinions to the contrary on that.

Jerry Wheatley Absolutely.

Kimberly Parsley And I remember calling you, because I was upset about something. And I don't even know what it was. Um, and I was, I think I may have been in tears and wailing and, you know, all that. And, so you talked me down and you said, ‘Well, you know, if you ever lose your cane, I'm pretty sure there's still one on top of Cherry Hall where I threw the damn thing!’ [laughter]

Jerry Wheatley 06:31 That was a very big deal for me: making myself carry a cane. And I don't know why, it just… As I lost my vision and really needed a cane, it, it was, it was a struggle to make myself pick that thing up and go out with it. But eventually, I did and it worked out okay. But I did throw a few around.

Kimberly Parsley 06:57 So, tell me about that. Why do you think that was that you were so reticent to pick up a cane?

Jerry Wheatley 07:02 You know, it's such a transition from being partially sighted or low vision to being totally blind. I can remember, with some of my buddies who were totally blind, and, you know, we'd be out in a strange place or at a meeting or something like that. And anytime we were getting ready to go up, you know, they’d grab an elbow. And I was thinking, ‘Well, I don't need to grab an elbow.’ And at the time, I really didn't. But when I went totally blind, I needed to apologize to all of those guys. It was, it's a different world! And it took me a couple of years after losing my light per se, you know, my light perception and everything else, before I really felt comfortable with my mobility and getting around. Always had a good sense of direction, but when I went totally blind, that kind of screwed me for, for a few years, you know, before I really got good and comfortable again.

Kimberly Parsley 08:03 Uhuh, uhuh. I think it says a lot about you that the thing that sent you to college was not being able to drive a tractor anymore.

Jerry Wheatley 08:09 You know, that was such a big part of farming to me, was, you know. A person, believe me, a person can be a farmer and do farm, most farm things, without sight and I do them now. I garden, we have some calves, do that kind of stuff. I can fence, I can, I can do everything, but I can't drive a vehicle, obviously. But to me at the time, in my Late 20s, that was such a vital part to me, to be able to drive the equipment. And, you know, and I got fairly dangerous before I quit. And, and I just, I couldn't see myself at that time farming without being able to, to be able to operate the equipment. And it was, it was pretty hard. It was a hard transition for me; all of that part was. And I think, I think still today that there's no occupation that I would rather do if I had my choice. Starting as a kid again, it would be farming, even though it's not necessarily a lot of money in it. It's just something you grow up with it, you learn to love it and you always want to do it. And when Lee and I retired, I was dead set on coming back somewhere on a little bit of acreage to at least pretend I'm farming. [laughter]

Kimberly Parsley 09:32 So, are you enjoying your retirement?

Jerry Wheatley 09:34 Oh, yeah. Absolutely! Absolutely. We, we, you know, we do a big garden and we've got, you know, we run eight or 10 feeder calves. We get them early in the spring and keep them to late fall and, know, got a bunch of fruit trees and all that kind of stuff. So, it’s, it's always something to do.

Kimberly Parsley 09:54 Good! Good. So, um, like, I’ve talked about how you were a mentor to me. So when, when you were going through that transition into total blindness, is there anybody who helped you through that? Any mentors that you had?

Jerry Wheatley 10:11 You know, at the time… Now, when I was low vision in grade school and high school at public school, you know, it's just something I dealt with, you know. I was never around anybody else that had a vision problem. I never met anybody who had a vision problem, so… But when I went to KSB, I was around a lot of people who were totally blind, high partials, whatever, and you become friends with them. And I had lots of friends that helped me get through that, you know, that had been, you know… There, there are a lot of us out there with RP and visual impairments that are degenerative, like RP. So, you know, I had friends that had been through it and all that kind of stuff. So yeah, I had a lot of help getting through that part of it.

Now, once I went back to school and wound up working for the Ky Assistive Technology Services Network (and that would have been around 1990) and KATS, at the time – or it's the Tech Act Project for Ky – and, basically, it's all about assistive technology for any disability; it’s the promotion of, the awareness of, and the demonstration of. So, we, we dealt with technology in all aspects of disability. And, and we had a, and it's federally funded, there was a main office – still is, it’s still around – and then we had, like, five centers around the state. And my first couple of years working for KATS, I actually worked at the Bluegrass Technology Center. And, I mean, I have worked with some amazing people: some advocates that are just, you know. I think back how lucky I was to get to be around some of these people. Like a Jean Isaacs, who was the queen of augmentative communication. Professor Deb Bauder, who I think is probably retired from U of L. But back when I worked with her, she was a PhD doctoral candidate at UK, and just so many other people and, that I worked with, when, during my time at KATS. And one of the, one of the people is – I want to mention that recently, Sharon Fields, and if anybody's from Ky and they have been any involved with disabilities at all, would know who she is. But she passed away recently and she was amazing. In 1991, I think I got that year right, when the ADA passed?

Kimberly Parsley 12:59 Uhuh. Very close.

Jerry Wheatley 13:01 Whatever year. [laughter] She was appointed the ADA Coordinator for the state of Ky. And, so I got to work with Sharon; me and, and a lady, another lady I worked with named Zola. And we went around and did training sessions on ADA for state government and working with Sharon was just awesome. And Sharon is, was been, has been a not just blind; she was, she was totally blind. She was not just an incredible advocate for blind/visually impaired, but she was an advocate for all disabilities. And she was the kind of advocate and… How can I put this? To me, it's easy just to go in and raise hell. You know what I mean? Just raise hell and bitch about something, but to be a true…

Kimberly Parsley 13:55 You do make it look easy. You do make it look easy. [laughter]

Jerry Wheatley 13:59 Watch your mouth. But to be a true advocate to me, you got to advocate and participate. You got to not only demand, you know. Your Demand and Disrupt: cool name, I think. But you not only got to ask for things or ask for the accommodation or, or whatever it is, but you got to participate. You got to be a part of the answer. You got to be able to look on the other side and see, ‘Can that accommodation, is that accommodation actually reasonable? What can I do to make that whatever it is want me there?’ So, and Sharon was fantastic about that. She was… Any, any kind of thing that dealt with disability, she was there, whether she was working or volunteering; she did as much volunteering as she did working. So, it was a privilege to work and know Sharon Fields for the past 30 some years. So, anyway, just wanted to mention, mention her and, you know, to mention her passing. So…

Kimberly Parsley 15:06 I'm glad you did. And we, of course, send our condolences to her family. She was truly a legend in, in Ky. I heard her name all the time. When I did an internship in Frankfort in 1996 and I heard her name a lot then. And, you know, you're right: there is there's a time to kick down the door and there's a time to use your manners. And people like you and me, we could do the door kicking down, because Sharon, people like Sharon, were there using their manners. Right?

Jerry Wheatley 15:35 Wait! You are better at kicking down doors than I am! Maybe a little bit better! [laughter]

Kimberly Parsley 15:43 I'm better at maybe stumbling and falling through doors and making it, making it look like I meant to do it. That moves me into my next. Next thing I was going to tell you was we have someone who thinks that you are that for her. So, I want you to listen to something that Elizabeth Thompson said about you.

Jerry Wheatley Ah-oh…

Elizabeth Thompson 16:04 My name is Elizabeth Thompson. What can I say about Jerry Wheatley? I'll pause right here, so he has time to laugh. Just kidding, on with my audio. Jerry is the goat! Not the animal but the Greatest Of All Time advocates. Not just for people with disabilities, but all people. Jerry is one of the people in my life I would happily age for, just so I could have worked with him earlier in my career. He made a huge impact on me, just being the person he is every day. He will do anything he sets his mind to IN the most unique way you can imagine. When I quit working at the job where Jerry and I work together, I took a picture of my office door to remember him by. Yes, my office door. Using his quirky sense of humor, he would hit my door with his cane as walked by and yell, “Hey! Wake up in there!” Once again, he demonstrated his remarkable skills as the true tradesmen is. Because, for the hundreds of times he hit that door, there was basically only one long mark. [chuckle] I always say Jerry is like a favorite family member and I would have him a special room in my house if he needed it. As I wrap up, I will leave you with a sign of mine and Jerry’s friendship. When he retired, I gave his wife, Lee, a sympathy card. Love you, Jerry.

Kimberly Parsley 17:30 So, Jerry, what do you think about that? You have had some impact on people's lives, huh?

Jerry Wheatley 17:38 [laughter] You know… First off, Elizabeth was incredible to work with. She is another person I enjoyed; you walked into the office every morning and she was always in a good mood. And, believe me, that made such a huge difference. She was always joking around. Didn't matter how you felt, you, you felt better after you walked in and said hi to Elizabeth. So…

Kimberly Parsley 18:02 So, I want to ask you about something that you used to talk to me about a lot and that was learned helplessness. So, can you tell me what learned helplessness is?

Jerry Wheatley 18:11 I sure can. And I'm sure, Kim, you've run into it just as, maybe not as much as I have, because you're not anywhere near as old as I am! [laughter] But, for example, when I worked at Bluegrass, in Lexington, before I moved to Frankfort, I did a lot of work with Protection Advocacy. We'd go out to school systems, meet with parents and work with different kids who were advocating for or different parents or kids who were advocating for what they needed at public schools or whatever school they were at. But you would meet some incredible parents and, that would be out there really demanding stuff for their kid; they wanted their kid to, to succeed. But you would run into some kids that you – and I'm not talking about just kids that I would work with, these would be adults sometimes – that had been so hovered over and so not, you know, not helped to be independent from a kid that they had been taught to be helpless. And that, that’s what I always considered learned helplessness. I had parents that were awesome! I didn't, you know, you, looking back, you know. They let me just, they let me go out and live and do. As a little kid, I would go out and do things even though they knew that some of the things might have been a little bit dangerous, they didn't hover over me. Of course, I had eight other brothers and sisters. So, if we lost one, you know, what would be the big deal? But I just…

Kimberly Parsley 19:55 That is so terrible! [laughter] Your siblings are probably going to listen to this and they're probably not going to be surprised that you said that! [laughter]

Jerry Wheatley 20:04 No and they probably tried to lose me once in a while! There's no doubt.

Kimberly Parsley 20:08 As a parent, I do walk that line of… I mean just, just today, I, in all sincerity, asked Michael if a human hamster ball was possible, because I'd really like to put my daughter in one and send her to school that way. Because, it is scary: you, you want to protect them, but you also got to empower them.

Jerry Wheatley 20:34 I would just like to know, it's like… I can remember one kid in particular when I worked in Bluegrass (this would have been about 93, maybe 92) from Eastern Ky, Far Eastern Ky. I never met the kid and I never met his mom. But he was about 12 years old and had just lost – one day he was, vision was perfect, next day he was totally blind. So, it’s kind of like you: a month or two later, his mom contacted me and, you talking about an advocating, advocating mom? She was great! I mean, she wanted that kid to go, you know, to have every piece of technology that could help him finish school and go to college. And she was constantly, you know, she was awesome! And the kid, and the kid would call me sometimes and he was so laid back. And I mean, he was, he was determined. I'm not saying he wasn’t, he was. He said, “I know mom needs to chill, but let me ask you this…” And he was an incredible kid and I worked with him off and on over the phone for a couple of years and I always, I heard that he went to UK and graduated from UK. But kids like that, that I met and worked with, like you and [him] (I can't even remember this kid's name), but that, you guys just made an impression that made it feel like I was, you know, what I was doing was worthwhile. And, like I said, to me, it's the kids like that that all they needed was a little information. Kids like you when you were a kid, I know you're not a kid anymore.

Kimberly Parsley Far from it! [chuckles]

Jerry Wheatley You on… And if it was a way to put that genetics and that personality and that drive and that parenting in – not just kids with disabilities, but in all kids – it would be awesome. In a way things are, technology-wise, they are so much better. And I think it, with the smartphone, the first iPhone, I mean, I thought, ‘My God, this thing does everything!‘ you know. So, the technology – not just the iPhone: the, you know, the, the technology in general – whether it's computer related, whether it's screen readers, you know, how well they've gotten; whether it's augmentative communication, all of this stuff has gotten better. But, and, I don't know if, you know, the end, you know, the kids… I haven't worked with kids in a long time after moving, you know. When I went to the main office, I didn't do as much direct services. I was more working on projects, so… But I'm sure there's the same mix that: kids that don't have the drive and kids that do or adults that don't have the drive and adults that do. So, I find it hard to actually quantify the difference between now and then. I just, I know the difference, like, the Ky School for the Blind. When I was there, most of the kids there in the 70s, if you took vision away and, and just looked at the kids in general, it would have been like any ordinary public school. I mean, kids were just standard kids, you know, and most of those kids that would go to the Ky School for the Blind today are mainstream. So, I think that is probably the biggest difference is that, at least in that area and I think for most other disabilities, they were mainstreamed anyway. But, you know, for varied, I mean, the Ky School for the Blind still has students, but they have students, not with just vision; they have, it's more a lot of multi-disability students. So, that part of it has changed. I’m not saying those students aren't awesome, because I'm sure they are.

Kimberly Parsley They are.

Jerry Wheatley But, it’s just, when I was there it was vision-only; now it’s more than just vision.

Kimberly Parsley 24:44 I see. Yeah. And there's such a role for those schools, you know, schools for the blind and things, still. Yeah.

Jerry Wheatley 24:49 And their role has changed, because of the mainstreaming, I guess, in order to serve, in order to do things, they had to. So…

Kimberly Parsley 24:58 Yeah. Yeah, because I, because I, I was mainstreamed, I never, I never got the Braille skills that I wish I had now. I wish I had, I wish I could read Braille really fast and really proficiently and I just don't, you know, and if I'd gone to School for the Blind, I would have, you know, I would have had that, so… I have the… Oh, sorry, go ahead.

Jerry Wheatley 25:20 No. I was just gonna say I, when I went to School for the Blind, I learned to read Braille there. But, again, I was a high partial: I read Braille with my eyes. And, so I could, I could get on a Braille writer easily; it's an easy code to learn. I wasn’t… When I was there, I if I wanted to read it, I'd pick it up and read it with my eyes. So, when I got to back to WKU, when I was no longer able to read print and I had to use Braille, that was one of the hardest things I ever did in my life was to learn to read the Braille with my finger. So, my God, was just, it’s just such a disconnect between, if you're always taking that input through your eyes to your brain and then you go to try to do it with your finger. And I'm sure you know, because you've tried, you've played with it some as an adult, and it's, it's very difficult. I finally got to where I consider myself competent, you know, maybe 40 words a minute (best ever got) where kids that learn braille from a kid, you know, 150-200 words a minute; they can read as fast as print. It's incredible!

Kimberly Parsley 26:36 So, what, what gives you hope for the future? I've been blind now 30, gosh, more than 30 years. So, it’s a long time. And, so in 30 years, what gives you hope for the future?

Jerry Wheatley 26:49 Well, here's the thing, now, and I never mentioned I am next to the oldest of nine kids. Right? [chuckle] I was the first, you know, my parents knew I had a vision problem when I was five or six, because, you know, they would, you know, they could tell that I wasn’t perfect. I didn't get diagnosed until I was eight or nine. But I have a middle brother who had RP and then I have my next to my baby brother who has RP and they didn't know it until long after I had it, because they weren't born until long after I was! But one of my brothers (and this is my brother, Ronnie), back when they were doing the implants for retina, for different retinal diseases, you know, and they were, they had little things – people would come and speak about it at APH back 15-20 years ago – I'd go to all those; I’d keep up with the latest research. And my brother, Ronnie, told me something and he's so right. He said, “Jerry, keep up with the research, but just, just glance at it, look at it, don't focus on it. Because, if you start looking ahead and thinking you're gonna get your vision back, you'll quit living now.” And he was so right, because I was starting to get it in my head that, hey, maybe, maybe, you know, that… What was it, the $250,000 eye implant that put the artificial deal together? I can't even remember the name of all of them. But, it, he was so right. You have just say, ‘Hey, yeah, I hope someday I see again. I don't think I will and I don't plan on it.” Because if you do, I really think he's right: you’ll quit living now, you'll focus too much on what may never happen. So, my, the future, as far as I'm concerned, is I'll be blind until the, until the day that take me to the other side of Raywick.

Kimberly Parsley 28:42 Well, Jerry, it has been wonderful talking with you, again. And I am personally glad that my children got to meet you when we were up in Louisville and when we had the dinner to honor the people who contributed to the book, “A Celebration of Family: Parents with Disabilities.” I always plug the book. Dave get, Dave yells at me if I don't plug the book, so I plug the book.

Jerry Wheatley 29:08 That Dave is such a taskmaster. Isn’t he?

Kimberly Parsley 29:09 Yes. Yes, indeed. And, so my, my kids got to meet you and you got to sit beside my daughter. And if I remember correctly, Lee only had to call you down twice.

Jerry Wheatley 29:22 You know what? I was on my best behavior that day.

Kimberly Parsley 29:26 That's your best behavior? [Laughter]

Jerry Wheatley That is my best.

Kimberly Parsley Well, thanks, Jerry. Everyone, read “A Celebration of Family: Stories of Parents with Disabilities.” Jerry and his wife, Lee Corman Wheatley, are chapter 24, which is after 23, which is my chapter. So, everyone, thanks for joining me! Thanks for joining, Jerry.

Jerry Wheatley 29:51 Thanks, Kim.

Kimberly Parsley 29:53 Thanks to Chris Onken for our theme music. Thanks to Steve Moore for providing our transcription. Support comes from the Center for Accessible Living in Louisville, Ky., and you can find links to buy the book, “A Celebration of Family: Stories of Parents with Disabilities” in our show notes. Thanks, everyone!

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Kimberly Parsley