Transcript of Edge Note: What If They Mistook Disability for Inability?

Welcome to Notes from the Edge, where we have the conversations we should have been having all along. We talk about the things that we're not talking about. I'm your host, Lisa Lacey, writer, trauma educator, executive advisor, and author of the upcoming memoir Notes from a Certified Madwoman. Welcome to The Edge. Hey, hey, my friends.

Welcome back to another episode of Notes from The Edge. I am your host, Lisa Lacey, and this is the place we have the conversations we should have been having all along. Guess what? You ain't talking about it. So today we're gonna, with special guest Ken Kunkun, and today we're gonna be talking about disability resilience, spinal cord injury, trauma recovery, identity adversity, life after injury, and what it means to overcome adversity to reinvent yourself. Let me tell you a little bit about our guest today. He is a retired trial attorney, rehabilitation counselor, author, husband, and father whose life changed drastically in 1970. While playing football for Cornell University, he suffered a spinal cord injury at the C4-C5 level that left him almost totally paralyzed from the shoulders down. After spending months in the hospital and rehabilitation facilities, Ken returned to Cornell in 1971, nearly 2 decades before the passage of the Americans with Disabilities Act. Despite enormous physical barriers on campus, he completed his undergraduate degree in industrial engineering and then graduate degrees in both education and psychology. He really went for it. and he became a nationally certified rehabilitation counselor working and helping people with severe disabilities pursue education and employment.

He has spent more than 4 decades working as an assistant district attorney in New York, eventually becoming deputy bureau chief and supervising other attorneys. His memoir, I Dream of Things That Never Were: The Ken Kunkel Story, was published in 2023, and it explores the extraordinary diff— distance between what he imagined at 20 and the life he has now that he ultimately built. Ken, welcome to Notes from the Edge. How are you today, my friend?

Thank you, Lisa. I'm great. Thank you.

Oh, it's so nice to finally, finally connect with you. So I— before we talk about— it's Notes from the Edge, so we're just gonna jump right in. So before resilience, before accomplishment, before everything that you have now, all the career success, There was a young man who thought, this is how my life's gonna go, and then it didn't. So talk to us about what it takes to really come to terms with the reality of our lives as it is now.

Well, obviously it's not something you could describe in one sentence. It takes a long time to adjust to a situation. That I had to adjust to. And I had to change my perspective on a lot of things about my life constantly throughout the last number of years. I might begin by saying, before my injury, I was always very physically active and physically con— you know, physically conducted my whole life around doing something physical. When I was a senior in high school, I played on the varsity football team, the varsity wrestling team, 3 different softball leagues, and worked during the summer as a lifeguard. Wow. So I was always doing something active. In college, I was playing on Cornell University's lightweight football team at the time that I had my spinal cord injury. in 1970. And I found that participating in sports was a great way to relieve the stress in my life before my injury. And I also felt it was important to stay in the best physical shape I could be in. So suddenly to have a spinal cord injury, and for me to lose all movement basically below my shoulders, was obviously a devastating injury.

And It really changed how I acted with other people around me, because before my injury, I would have characterized myself as a bit of an introvert. You know, I would sit in the very back of a large lecture room, hope nobody would notice me, never raise my hand. And suddenly, I was dependent on others for all of my physical needs and help. But also, I had to speak to ask for it. So I couldn't just sit back and, you know, try and blend in with the crowd. I had to speak up and ask people to help me with all aspects of my daily living.

I love that you bring to our attention how important it is for all of us to ask for help when we need it. And it takes practice.

And it's difficult to do many times.

Yeah.

Depending on what you were like at different times of your life, it could be really difficult to ask others for help.

Yeah. Yeah. And I grew up very hyper-independent. And so it does even still— it's a, it's a daily practice, my friend. I'm working on it. I'm working on it. We're always working on something, aren't we? Well, I want to talk about when everybody else— okay, so everybody else could see limitations, right? If you have disabilities, everybody else could see limitations. But it sounds like you were like, Uh-uh, this ain't stopping me. Where does that come from? Where do we dig in deep to find that, to keep going when adversity happens for us?

Well, I was fortunate that I had a very supportive family and group of friends who kept encouraging me, that they told me there's a lot I could still do. And if need be, they would act as my arms and legs to make sure I could do everything I wanted to do. And that was what was so important for me. And it was their encouragement that kept me motivated and going. In fact, I felt I'd be letting them down if I didn't do everything I could do to make something productive out of my life.

they sure do.

They do. And if you're surrounded by toxicity, there's a way out of that. There really is. And once you find the, the one person that's on your, your new vibration, they all start falling into place. So, well, Ken, is— do you feel like resilience is something that is just innate in some of us, or can we build that?

I think we can definitely build it. I mean, we all come into this world With different skills, abilities, attributes, and then we have to develop them and hopefully develop new ones as well. And you need to adjust to the situation that you're in. So, you know, I knew that while I could not always control what happens to me, I could control how I react to it. And I think that talks about resilience. How are you going to react to whatever situation you find yourself in?

I love that. Yeah, so you obviously are an advocate, and, and you were, you were trying to work in a campus before the Disabilities Act was even a thing. How challenging was that to even just get around?

Well, you know, I was studying at Cornell University before my injury, right? I got hurt at the beginning of my junior year, so after spending a lengthy, lengthy period of time in the hospital and rehabilitation center, I decided that what I really wanted to do was to go back to Cornell and resume my studies. But unfortunately, at that time, Cornell was probably one of the least accessible campuses you could ever find because Cornell is in upstate New York doing— excuse me, it's on a very hilly terrain. And in 1971, when I went back to school, there was not one ramp or curb cut on the entire campus. So, Lisa, on my first day of classes when I went back, I had to be either pulled up or bounced down close to 100 steps just to attend my first day.

Wow. Wow. That's a bouncy ride, my friend.

Sure was.

It

sure was.

Bouncy ride. Good for you. Good for you. So what did becoming a trial attorney give you that you might have been searching for? Like, what part of you did that fill? Um, what, what skills did you gain from that? How did it change your perspective being a trial attorney?

Well, one, I thought people looked at me very differently. They didn't just see somebody sitting in a wheelchair who is not moving at all. They saw somebody who is now appearing before juries and judges and witnesses and being very active using my mind, using my intellectual ability and my speaking ability. And that carried a lot of respect. So I worked for the Nassau County District Attorney's Office on Long Island, and I was there for more than 40 years.

Wow, wow. Congratulations, my friend. Congratulations. Yeah, I can tell that little Long Island accent. I hear it, I hear it. Yeah, I know we're down here in the South, so I know you can hear a little bit of mine too. So, all right, I want to talk about your memoir because I want people to pick it up. How was the process of writing your memoir? What— did you find some challenges? Did you hit some writing blocks? How was the process of getting it done?

Well, that's a good question because before my injury, and I would say even after my injury, I never even considered the possibility of writing a book. I mean, I was studying engineering at the time, and we were known— students in engineering were very good at math and science, not so good at English and writing. So it was a real challenge. But a friend of my Aunt Lorraine's by the name of Al Begley suggested that I write a book. He visited me while I was still in the rehabilitation center, just 6 months after my injury. And he thought so few people know about what goes on with respect to a spinal cord injury and rehabilitation that he thought it would be interesting and informative for everybody if I shared my experiences. So he used to visit me at the rehab center once a week, and I would dictate to him what I was going through, and he would write it down. And it was also another way to try to help me deal with the depression I was going through. You know, I was severely depressed at the time, and he felt, as well as others felt, if I talk about it and verbalize it, that that might help with that as well.

So he helped me for quite a while while I was still at the rehab facility. But then, you know, when I left and went back to school, I wasn't able to speak with him again, you know, in person to work on the book. So I started doing some on my own with braces and splints. I was able to actually type a little bit on an electric typewriter. It was really, really slow.

Oh, you're dating yourself now. We're going back to an electric typewriter.

Oh, this was well before laptop computers, right? And on a good day, I could actually get my top speed up to 12 words a minute.

Wow.

But that lasted, you know, maybe 5 minutes before my speed would drop to 10 words a minute and maybe 8 words a minute and sometimes less because my arm would just fatigue because it's so difficult. for me to move it at all, that I had to use braces and splints. So it took quite a while. And I would start and stop my book many times over the years. And eventually, after trying to do some on my own, I later had the wonderful experience of meeting my wife, Anna, who helped me in every way she possibly could. And she—

hi, Anna, by the way. Yes, Anna is sitting right next to him right now.

And Anna suggested that I work on my book again and that she would actually sit next to me by the, um, well, now she had a laptop computer and I would dictate to her and she would type it up. And I would say we worked on it for quite a lengthy period of time. And I finished it about 3 years ago, which was more than 50 years after my injury.

Wow.

So it's actually on the shelf right behind me now. And I'd like to tell you where I got the name for the title of my book, I Dream of Things That Never Were. 6 months after my injury, I had been asked to testify before United States Health Senate Subcommittee chaired by Senator Edward Kennedy. Now, at the time, I was still in the rehabilitation facility. I think that was either the first or second time I had actually been out of the hospital in 6 months. Mm-hmm. And Senator Kennedy had asked me to testify. And 8 days after my testimony, he sent me a glass paperweight in the mail that had an inscription on it that the senator said his late brother Robert Kennedy liked very much. And the inscription read, some men see things as they are and say why. I dream of things that never were and say why not. And that's where I got the title of my book, I Dream of Things That Never Were: The Ken Kunkel Story.

Oh, I just got chills, my friend. I love it. What an amazing journey of resilience and just putting the middle finger up to adversity and being like, ain't nothing stopping me. And now you have a happy, healthy marriage to boot. So you ended up with all of it, my friend. Good for you.

And, and Lisa, you gave a wonderful introduction about me and my background, which I appreciate. But there's just one more thing I would like to comment on.

Please.

You indicated that I'm a parent. Well, I would like to tell everybody that on January 24th, 2005, I was present in the delivery room with my wife, Anna. Picture this, Lisa. I was present in the delivery room when my wife gave birth to triplets.

Oh, that makes my head spin.

Joey, Jimmy, and Timmy. They're now 21 years old. They're seniors at 3 separate colleges in upstate New York.

Oh, congratulations, my friend. And Anna, oh my goodness, how'd you do that, woman? She's unbelievable.

She's a superwoman.

Yeah, I had one and she nearly took me out, so I couldn't imagine having triplets hanging on to me at the same time. Well, congratulations to both of you guys. Where can we find your memoir?

Okay, well, it's available on Amazon. But they could also Google me or look at my website, which is kenkunkin.com. And that will tell them different ways they could purchase the book. Now it's available not only in hardcover, but in an ebook version, as well as an audiobook version that I narrated myself. And my son Timothy did the recording.

Oh, how fun, how fun. Well guys, you don't even have to write that down. We're going to put a clickable link in the show notes for you. All right, Ken, before I let any of my guests go, I still have 2 more questions for you. Are you ready for the first one?

I'm ready.

Okay. In your own life, what do you feel like you might have performed in order to survive or just get by? And what did setting that role, mask, or performance down do

Could you repeat that? Yes.

What do you feel like you might have performed in your own life? Maybe performed strength, performed confidence, maybe performed people pleasing in order to survive? And what did setting the role, the mask, the performance down do to help improve your life?

Well, I think part of that was developing the confidence in myself to believe despite what physical disability I have, that I could still not only survive, but achieve success and lead a good life. And I think that took a lot of work on my part, but it was helped extremely so much by the love and support I got from my family and friends. And I could just tell you, when I first started trying cases in the courtroom, since I have so much difficulty writing and turning pages, I used to keep a pad in front of me. And I was able to write very difficultly one word on that pad. I wrote the word confidence. Oh. And that's what I had in front of me when I was picking a jury. So while most attorneys had different types of notes in front of them, whenever I wanted to stop my eye contact and have an excuse to look down, I would look at my pad and see I wrote confidence, and I would just get a big smile on my face and be able to continue when I saw that.

Well, my friend, I'm writing that on my mirror today. I'm writing it on my mirror today. What an amazing human being you are. All right, last question, Ken. What do you want us human beings to talk more about with each other that we're not talking about?

Well, there's a lot everybody can do if given the opportunity. And that's the problem, is so many people have preconceived notions of what somebody is like, or what they can do based on what they've observed about them, without giving them the benefit of whatever doubt they may have. And let them show you. what opportunities they could take advantage of and do and perform well. And these days, you hear a lot of people seem to be criticizing DEI, diversity, equity, and inclusion. I believe they're looking at it totally wrong. Being diverse, being equitable, including everybody helps everybody, not just any one particular individual. it helps everybody around them. And I might add that I am so proud of the fact that the District Attorney's Office where I used to work before I retired actually named an award after me, the Kenneth J. Kunkin Award. They give it out annually. It is the only award they give out annually to the outstanding assistant district attorney each year in the office because they wanted to recognize Right? What somebody facing different challenges can do with their lives and how they help everybody succeed by having somebody like that in an office working with them.

And I am just so proud of the fact that they not only recognize that, but they encourage others now to see that. And I think it makes a huge difference. I would just like to add, Lisa, when I first started working, way back in the '70s. I had completed an undergraduate degree at Cornell, a graduate degree at Cornell, a master's degree at Columbia, and nobody would hire me.

Hmm.

Despite 3 Ivy League degrees, 2 master's degrees, all people seemed to look at was my disability. And it took a while to come in contact with one organization called Abilities Incorporated on Long Island, which is part of what's now called the Viscardi Center, to give me that opportunity to show what I could do. And that changed my life. And it's as a result of that opportunity, I was able to not only work as a rehabilitation counselor, but have the confidence to then leave and go to law school and work as an assistant district attorney. And in addition, have the wherewithal, the means, and the confidence to get married and become the father of triplet boys. And that's because of that opportunity I was given.

We need opportunities, friends. And Ken said yes when the opportunity presented itself, and he didn't make excuses. So my friends, there are no excuses, and there are infinite possibilities for what you can accomplish. And Ken is an example of that.

Thank you.

Well, thank you. And friends out there, I'm going to ask you the same question in your own life. What might you be putting on just to survive or get by? And what do you think setting that role, mask, or performance down might do to lighten your load just a little bit? I'm your host, Lisa Lacey, here with our special guest, Ken Kunkin. Grab his memoir, and when you find the answer to that question, we will both see you at the edge. Thank you, Ken.

Thank you, Lisa.