Episode 1 Overcoming Tragedy
Hosted by: Jo Lynn Sheane Guests: Judy Robinet, Dr. William McDermott and Stevie Wonder
Excerpt Episode 1 Overcoming Tragedy:
In our first podcast, we’re going to meet Judy Robinet, the driving force behind A Life Worth Living and to understand why a team of experts came together to found this charity in 1994. Their goal is to share stories with you that teach, inspire, and bind people together.
Transcript Episode 1 Overcoming Tragedy:
Jo Lynn Sheane 00:08
Welcome to Better Together with A Life Worth Living. I’m Jo Lynn Sheane. 1994, the Year of the Family and the heads of several community health services came together to form A Life Worth Living. The charity’s goal to include people who live with disabilities into every part of society, and to share those life stories, as well as the stories of families, friends, employers, and others. And now in Episode One, we are going to share some of those stories with you to inform, to inspire, to learn how we are better together.
Jo Lynn Sheane 00:46
Thanks to the Essex and District Lions Club for sponsoring this episode. “Where there’s a need; there’s a lion.”
Jo Lynn Sheane 00:53
Ken was young, a high school student looking forward to graduation and preparing for a career in the military. But then, he started to gradually lose his sight. It was only after getting into a car accident that he was finally diagnosed with retinitis pigmentosa, an eye condition that would lead to his permanent sight loss. Shortly after, Ken tried to commit suicide. Today we’re going to meet Judy Robinet, the driving force behind A Life Worth Living. We’ll also find out more about Ken’s story and how his frustration and questions were the catalyst to creating A Life Worth Living.
Jo Lynn Sheane 01:39
Judy Robinet has quite the resume. Trained as a Child and Family Counselor, she has spent years working to help the visually impaired, especially in the area of advocating for them to be included in workplaces, at home and in the community. For her, inclusion is everything. She has co-authored research into self esteem and independent living, and received numerous awards recognizing her contributions. Judy, welcome.
Judy Robinet 02:06
Thank you, Jo Lynn.
Jo Lynn Sheane 02:07
The listeners are about to hear why the people who know you are blown away by your dedication to advocacy, you never miss an opportunity to advocate for people with disabilities, and to ensure that everyone understands why it’s so important for them to be included and to feel included in everything. Tell us why you’ve developed this podcast.
Judy Robinet 02:28
Well, you know, it takes a village to help people. To move forward. To be successful. All of us are dependent on people. We depend on electricians; we depend on plumbers; we depend on farmers; we depend on the auto industry; we depend on the internet, just to live. So dependency is really knowing how to live with one another and support one another. We are surrounded by role models. That’s how we learn to walk, talk, eat. And that’s how we choose a career. But we want you to be a good role model, a role model that would inspire someone that would help somebody grow to be successful. We want you to be that role model that is instrumental in helping someone walk up the steps to fulfill their dreams. And, that doesn’t mean just the person with the disability. That means all of us, we all have dreams. We all need someone to help us walk up the steps.
Jo Lynn Sheane 03:31
So what kind of stories will Better Together feature?
Judy Robinet 03:34
Stories that teach. Stories that inspire. Stories that bring people together.
Jo Lynn Sheane 03:40
So where did you get your drive from to help people?
Judy Robinet 03:44
My drive comes from stories. I think of stories all the time because we’re surrounded by it. So we are surrounded by stories every day, from the moment we wake up in the morning, we listen to the news, we watch TV, we use our social media, we talk around the water cooler, but few if any of those stories are about people with disabilities. Few of those stories meant something to me when I wanted to know who went before me that was walking in my shoes.
Jo Lynn Sheane 04:16
Hmm. Right. Because that you share a bond with these people in their stories. You’ve also had your share of people who’ve come alongside you. So let’s talk a little bit about your own story. And that’s where it all started for you. And something happened 56 years ago.
Judy Robinet 04:32
Yeah. I’m old, obviously. So it was May 10. A lovely night. Our horse just had a colt and my boyfriend came to look at the colt and to enjoy seeing the farm with me and experience that. At the time, he asked me if I wanted to go out for an ice cream cone. Mom was home. Dad was working afternoons. So, Mom said even though it’s a school night I’ll let you go. We headed out and he was late to pick up his sister from the doctor’s appointment. And he was racing a little bit. The roads were rocky. The gravel was hitting the bottom of the car. And I’m not sure if you understand what washboard is, but it’s like ridges in the road. He was driving quickly around them. It was dark. It was dusty. He thought he was on a through road. In the end, it was the dead end road. We drove into the dead end sign. I flew out the window and came back in. The car I was riding in didn’t have seatbelts.
Jo Lynn Sheane 05:41
Oh, wow. What were the extent of your injuries? And what were you told about how that would affect your your life?
Judy Robinet 05:49
Well, my injuries were pretty severe. I was… I had the right side of my face was crushed. My jaw was fractured. My back was fractured. My organs were damaged. My leg was compound fractured. My brain was swelling. I was in a coma for about three days. But I left the hospital in about a couple weeks. In my hospital room, they removed all of my mirrors, because they didn’t want me to see myself. There was an impact on my visitors. When people came to visit me they vomited, they fainted, they threw up.
Jo Lynn Sheane 06:26
Oh my goodness.
Judy Robinet 06:27
They cried. Always. So, anyone who visited me, except the doctors, had lost control of themselves. It was just too hard for them to come into the room.
Jo Lynn Sheane 06:38
I can’t imagine what that would have been like for you. You were a teenager at the time.
Judy Robinet 06:41
I was. When you know when a pimple was a big thing, this was pretty big. That began my family’s grassroots search for what they can do for me, because the professionals told them, I would not be productive, that I would not be educated, and that I would not be married. And when I did look into the mirror, finally, because someone lent me a little pocket mirror, the Judy I knew and loved was gone.
Jo Lynn Sheane 07:12
Oh my goodness. Wow. So one of the goals of this podcast Better Together is to highlight the importance of coming alongside people in their struggles and just the difference that that makes. You had a strong influencer in your life. And we’ll talk about that in a minute. But there were also small acts of generosity and kindness shown to you that were huge for you in that time. Why don’t you tell us about a few?
Judy Robinet 07:40
Well, my accident was May 10th, and my Mom and Dad spent most of the time at the hospital taking care of me. Wondering, as the doctor said, will I make it. And, the neighbor made my brother a cake. May 10th was my accident. May 12th was his eighth birthday. And she just put that cake on the table for my mom. So my mom could know that they, he, could celebrate the birthday that she wasn’t there to prepare for. Then while I was in the hospital, and I told you about how people, my friends, couldn’t be around me, I received a letter from Kathy Farough. Kathy was legally blind. And I had befriended her at high school and I also let her ride my horse. That letter meant a lot to me because she lived the life that I was about to live. And she encouraged me that I can do it. We’ll do it together.
Jo Lynn Sheane 08:39
Wow.
Judy Robinet 08:40
Before I came home, I had long hair at the time, and the blood had stained by hair red. And, actually the nurse thought that my hair was red. But my mom didn’t want to wash it because my head was full of glass. And so before I went home, so that I would look nice, she took time after work to wash my hair so gently and carefully, knowing that every brush against my head would pull on the scars or the stitches and also would hurt me because of the glass that was in my head. So when I got home, my parents had put me in the living room, they brought my bed down. That’s where it was. My dad would make me dust on my knees, because that’s all I could do. And then also they would put a chair out in the lawn. If I could get to that chair before the bus driver dropped off Chris from school, the bus driver would get off the bus and come and talk to me. That meant so much to me. And it made me work very hard. It probably took me an hour an hour and a half to get from my bed to that chair. But it was well worth it. And, it meant so much that he cared. And one of the times I was sitting in that chair, Andy Tygat, asked me to go to the bus party. I thought I wasn’t going to be invited because I’m so damaged. I’m so. How can I get there. And he carried me up to his hay mow, he had set up the straw bales, so I could sit in there. And when they had a dance, he would pick me up, and he would carry me in his arms, so that I could belong. I was part of the activity, not the same way, but I was there. I wasn’t just a physical presence, I was part of it.
Jo Lynn Sheane 10:42
I feel like you have endless stories that you could give us of people who did these acts of kindness and generosity to you. And even though it’s half a century later, they have left such a mark on you. And that’s it. That’s what you want to get out with this podcast, right? It’s those little things. Sometimes they can be big things too. But it’s those little things that make the difference for people.
Judy Robinet 11:04
People who stepped in. The people who made that difference, and made you feel a part of everything, that you belonged. Can I do the Toronto trip?
Jo Lynn Sheane 11:13
Sure, you can tell the Toronto story. I know that that jumps forward in time a bit. Why don’t you take it from there?
Judy Robinet 11:19
Okay. So obviously, over decades, I had dozens of surgeries. So on a Monday morning, I dropped in to see my doctor because something wasn’t quite right. And my doctor, my eye doctor, just takes me in. He just knew that I would know. That was Monday. Tuesday he sent me to London. And in London, they said, Oh, you’ve got a couple weeks, it’ll be okay. You got a couple of weeks to make any decision. We’re not sure what the decision is. Wednesday was my sister-in-law’s birthday. So, we were spending the day having so much fun at Jackson Park. At the same time, Dr. Bernstein called every 15 minutes. I had to be a Toronto General, by midnight, or I would lose my rest my sight. Or even worse, it would go to my brain. So then we had no plastic at that time. We had no money at that time. The banks weren’t open at night. So I called my sister, my sister who’s so particular about how she looks. She had long, beautiful hair, she showed up at the airport with the money I needed with her half her head in rollers half her hair wet hanging down and brought me the money so I could go on the airport on the airplane. Anyway, when I climbed the steps, I looked back, and I realized at that time, I may never see my two year old daughter again. I may never see my sister again. I may never see my husband again. And I was heading out. Now, my sister wanted to come with me. But you know, money meant something to me. So I said, no, you’ve got to go to work in the morning, don’t worry. And here’s how things just happen and how somebody steps in. Somehow that stewardess knew that something was wrong. She sat with me the whole trip. And when we got to the airport, those stewardesses took me all the way to Toronto General. Sat with me until I got into the hospital and into my room, into my pajamas. And it was two minutes to 12 when I got into that hospital. Amazing how they did that. And then another little secret thing. I was on the cancer floor, and I met a guy who had his eye removed. And he invited me to come to Niagara, Niagara and to pick dark, sweet cherries off his tree, as many as I want. So that was a little blessing as well. There’s how people just step in and help you.
Jo Lynn Sheane 13:58
Now, you you also mentioned your dad a few minutes ago. How did your dad help you?
Judy Robinet 14:05
Well, when I was in high school, there were so many things that people said no, no to gym class; no to athletics; no to riding my horse; no to being in this class; no going to a dance. I was faced with nos. And I realized at that time that my life is now dramatically different. I will not be an athlete. I will not be doing the things that I love to do. And I cried uncontrollably on his shoulder. And he didn’t want to hear that. I don’t want to hear that. And so while I was in his arms, he told me that I am always going to face obstacles, and it’s up to me what kind of future I’m going to live. He told me: know who you are; decide where you’ll go; and choose a life worth living. And, to never blame anybody else if I failed.
Jo Lynn Sheane 15:00
So those were his words to choose a life worth living.
Judy Robinet 15:03
They are his words. Definitely.
Jo Lynn Sheane 15:06
So, it sounds like your dad, he drove you in a lot of ways. It’s an encouragement, but I’m hearing that just that not acceptance of, you know, a non acceptance of what the doctors had told you that you weren’t going to live a productive life. So, you know, how, how did your dad’s words affect you?
Judy Robinet 15:31
Because he just said go on and live life. When they said I couldn’t drive a car. He brought somebody in from the States to teach me how to drive I ran into his house, I ran over a tree. But he told them, I have two daughters. I live on a farm. She needs to drive. He was good. So he made sure that I got to do the things that I would have done maybe a little differently. But I did have a full life. I have a wonderful husband, a lovely daughter. I went to school, my husband funded me to school for St. Clair College, the University of Windsor, Michigan State University twice. And, I have four wonderful grandsons that I love. And of course, my husband stood by my side and, so did my sister, as we founded A Life Worth Living because I wanted to make life a little bit easier for someone else.
Jo Lynn Sheane 16:30
A Life Worth Living. It’s about that sense of belonging. So what is it about stories that is just so powerful, and advocating for people with disabilities and really other kinds of setbacks as well.
Judy Robinet 16:42
We learn so much from stories. From the beginning of time and throughout history stories have helped to teach, inspire and bind people together. They foster the understanding of who you are, and who others are. Through stories we explain how and why we are. Stories connect society to our past, our present, and helps us anticipate our future. A Life Worth Living is a modern day storyteller. Stories have influenced social behavior, stories have made a difference in where society heads for the better. For the worse. Fairy tales are written so that children can learn values and messages. In fact, my sister read me Beauty and the Beast and that’s one of the fairy tales I just love. It is a fairy tale about Beauty, who came to love the Beast even though he looked different than her. She learned to look inside him. And many people may not know but this story of Beauty and the Beast is based on Petrus and Catherine who had a wonderful family. Petrus had that condition that we call werewolf where he had so much hair, but they were happy and prosperous and enjoyed life. That’s one of the stories.
Jo Lynn Sheane 18:07
So what story was your earliest inspiration?
Judy Robinet 18:10
My earliest inspiration was watching the Miracle Worker on TV. I was so impressed with Anne Sullivan, everybody else was focused on Helen Keller. But for me it was Anne Sullivan. Anne Sullivan was legally blind. She was an orphan. She had a tough life. And here she was she unlocked the loneliness and isolation of Helen Keller.
Jo Lynn Sheane 18:33
So I guess what you saw there was that there are no obstacles to being a helper.
Judy Robinet 18:39
There’s not. And if you didn’t have Anne Sullivan, we would have never had Helen Keller inspiring the world.
Jo Lynn Sheane 18:46
You’ve been collecting your own stories for a long time now. Talking to all kinds of people in various walks of life people like Anne Sullivan people like Helen Keller. I understand that you even had a chance to interview Stevie Wonder one of America’s most well known singer songwriters. He too has someone who believed in him, and he can illustrate the difference it makes when we help each other. Why had you reached out to him in the first place?
Judy Robinet 19:13
Well, because I went to Michigan State and Stevie Wonder’s best friend was JJ Jackson. And my advisor was Stevie Wonder’s principal. So there’s the connection. But I reached out to Stevie Wonder because his mom inspired him. He understood right away when I told him about my dad helping me through. Others told them you’re blind, you’re black, you’re poor. We are all familiar with his music success. But for me, it wasn’t his music success. In fact, when I first met him, when he asked me what song he wants me to have him sing for me, I don’t know which one. And I was interested in his civil rights, all that he has done for apartheid in around the world to make sure the dignity and sanctity of people were upheld.
Jo Lynn Sheane 20:05
You talked about a lot of things with Stevie Wonder what were your big takeaways. And it would be great if you could set up a clip from your interview with him.
Judy Robinet 20:12
My big takeaway from Stevie Wonder was how humble he was, someone was such celebrity. He was so humble, so caring, so interested in people, he felt what we were doing with A Life Worth Living would go worldwide. He cares about people, he wanted to make a difference, he understood the catalyst story about suicide.
Stevie Wonder 20:36
More than ever, alcohol, drugs, and suicides, are tempting solutions for youth dealing with the mounting pressures of daily life. Now add to these dangers, the sudden onset of blindness, how do you restore hope, when dreams are shattered? When you are made to feel that your impairment means that you cannot move that you cannot exist, that you cannot live, that you are totally dependent upon other people, then it truly does become not only a physical impairment, but a life impairment. And it’s a funny thing, with people with impairments who are visually impaired, I can speak for that, is that you know, we want you to be close to us, we want you to love us, obviously, and to care we, we don’t want you to be so close to us that you inhibit us from being able to discover, to learn, to know. And so, I think that that kind of balance will be shown far more than ever before with what we’re doing with this, in this whole concept of A Life Worth Living.
Jo Lynn Sheane 21:51
Judy, I know that you really treasure this conversation that you had with Stevie Wonder and the support that he has given A Life Worth Living. For this podcast Better Together, how important is it to hear from someone famous like him, but also to hear from people who are not famous at all?
Judy Robinet 22:07
You know, people identify and have a bond with celebrities. But celebrities don’t often play a part. The one time that I really remember is when Christopher Reeves fell off his horse. And they held Christopher Reeves: A Celebration of Life.
Jo Lynn Sheane 22:24
And he was he was Superman, just for people who might not remember.
Jo Lynn Sheane 22:27
That’s right he was the Superman. Robin Williams was the host. So it was a good night. So at that time, Stevie Wonder said to Christopher Reeves, because you cannot walk does not mean you cannot go the distance, because you cannot see does not mean you do not have vision. I wish celebrities would take on the cause of people with disabilities. Michael J. Fox has taken on Parkinson’s because he has Parkinson’s and that’s when they come together. But in reality, they haven’t taken it on. I have lived through the Civil Rights, Women’s Rights, the Disability Rights Movement is the biggest of all, but the celebrities aren’t there to draw attention. And it’s global. It’s the biggest group.
Jo Lynn Sheane 23:16
So it’s just not a sexy cause I guess eh?
Judy Robinet 23:18
It’s not sexy at all. But if you want to talk about people who are not famous, we could go back to the story of Anne Sullivan and Helen Keller. Neither one of them were famous at the time. And yet, Helen Keller went on to change the world, because Anne Sullivan helped her.
Jo Lynn Sheane 23:37
And Stevie Wonder has a powerful story. We thank him for his generosity in sharing it with us. We’ll be right back.
Jo Lynn Sheane 23:50
Thanks to the Essex and District Lions Club for sponsoring this episode. “Where there’s a need; there’s a Lion”.
Jo Lynn Sheane 24:04
Welcome back. This is Better Together and I’m Jo Lynn Sheane. We’re speaking with Judy Robinet, founder of A Life Worth Living and longtime advocate for people with disabilities. Judy, you told us a bit about your story and how your dad influenced you to live beyond any limitations that others tried to put on you. The stakes are high for you, life or death of a life worth living. For others who have been disabled the choice can be life or death. Let’s fast forward a number of years. You got a Master’s degree in Special Education of the Blind, Deaf Blind and Multi handicapped, which is what it was called at the time. Then you were hired by the Canadian National Institute for the Blind to work with children and youth from birth to 21. At some point there, you met a young man and we’re calling him Ken, but that’s not his real name. He was a real game changer for you. Tell us about Ken.
Judy Robinet 24:59
Well as I walked into the hospital to see Ken, memories came back to me about my car accident. Ken had been in a car accident. They had called me in because they said he tried to commit suicide. As we talked, he let me know about the losses, he said he could deal with the loss of his sight, the loss of his reading, the loss of his girlfriend, the loss of his driver’s license, and the loss of his friends. What he couldn’t handle, and he called it the “kicker”, the kicker was the loss of his job, the career he had planned on, he couldn’t handle that. He wanted me to introduce him to people who had lived this life, but confidentiality, time, distance, expense, we couldn’t do that. He asked me again, how can I live this life? How do others live this life? His family who is walking an 18 year old across the street holding his hand wanted to know, how can they help?
Jo Lynn Sheane 26:03
So what was it about his questions, then that had bothered you so much? What did you want for him?
Judy Robinet 26:09
I wanted him to have the answers. And I knew the answers weren’t there. I’ve been in the field for many years, the answers weren’t there because we haven’t collected the stories of people who live the life. And that’s the ones that we need. Someone who’s been in those shoes; someone who understands.
Jo Lynn Sheane 26:27
Right. So that’s why you collect those stories of helpers too to kind of show how it’s possible, and how we can contribute. Right?
Judy Robinet 26:35
Exactly, exactly.
Jo Lynn Sheane 26:37
So for Ken, ending his life seems like the best option, and thankfully, he was not successful. But how common is it for people in the disability community to attempt suicide?
Judy Robinet 26:48
Well, there’s differences. If you’re born with a disability, then you have all of the disability adaptive devices and skills, and you’re trained from birth, you really don’t know what you’ve lost. If you become disabled later in life, then that impacts you. And you recognize all those losses, and that you now are starting from the beginning again, and you don’t know those skills. And so it causes you some suicidal thoughts. But once you get those skills, then you know that you can move on and you can overcome this, and it was only a perceived tragedy.
Jo Lynn Sheane 27:28
Now, I understand that you in your work with A Life Worth Living, have consulted with a trauma psychologist, his name is Dr. Bill McDermott. Tell us a little bit about him and what his contribution has been for A Life Worth Living.
Judy Robinet 27:43
Dr. McDermott was a colleague of mine, we worked in children’s services together. But I was impressed with his background in counseling people who are traumatized. He’s worked in Bosnia, Cambodia, he was called to the World Trade Center. And he would give me perhaps a perspective that I needed. Confirmation that where we were going was right, what should we be doing? Most disabled people have feelings of depression, they have feelings of suicide, but in that it’s not about the disability is about not being included. Not being a part of society. And that, is probably what is the biggest issue.
Jo Lynn Sheane 28:32
So Judy, we have some tape from your interview with Dr. McDermott. And here’s how he describes the common reactions when someone is diagnosed with a disability.
Dr. Bill McDermott 28:43
There are a terrific number of individual differences between how people stretch and cope in traumatic events. In traveling through these journeys of traumatization we become lost. We become lost in many ways. Our our psychology, our emotionality doesn’t operate the way it ordinarily operates. So we begin second guessing ourselves, we begin doubting ourselves, we begin doubting our competencies and our capabilities, we begin doubting our goodness. And that leaves us ordinarily bewildered, puzzled, generally frightened, very uncertain, very insecure for a time, that time could be moments or it could be months.
Jo Lynn Sheane 29:33
Judy, I guess that’s where the suicidal thoughts creep in. Did that ever happen to you?
Judy Robinet 29:39
When Bill talks about that good things happen to good people, bad things happen to bad people, that you start thinking that you deserve this. I never felt that. I felt I didn’t deserve this. I was wronged. I was a passenger in a car. I didn’t. And actually, I lost my faith. I thought that the God who was supposed to take care of me, let me be crushed like a sparrow on the ground.
Jo Lynn Sheane 30:07
That’s an understandable reaction. From your experience, how many people actually, though do express a desire to just die.
Judy Robinet 30:19
I don’t know but one is too many. That month, I met Ken, there were three suicide attempts in our community due to the loss of vision. Dr. McDermott shared his insights with me to help me understand.
Dr. Bill McDermott 30:36
I think that there’s a difference between parasuicidal thinking and suicidal thinking. Suicidal thinking is the thought of wanting to die, wanting my body to stop working, wanting death to come and wanting death to come sufficiently badly that I will cause my own death. Parasuicidal thinking is thinking that has less to do with wanting to die than wanting the pain and anguish to cease. And I don’t really care how that is, if I could fall asleep and stay asleep forever. Or, if I could find an altered state of consciousness or block things out and keep them blocked out forever, then that would be just fine. I’ll settle for that. That’s parasuicidal thinking. That’s… it has an element of I need to escape the reality of my pain and suffering, my anguish, my despair, my anger. And any way to escape that would be just fine with me. And we call that parasuicidal thinking as opposed to concretely, specifically suicidal thinking, I want to die, I want my death to occur, and I’m going to cause my death to occur.
Jo Lynn Sheane 31:54
So they want that life that’s worth living, but don’t see how they can get there. Judy, how do the helpers change things for people.
Judy Robinet 32:03
They help them gain proper perspective. They help them see that they are worth living. Their life is important to people around them.
Jo Lynn Sheane 32:13
And, Judy, that brings us back to the power of telling stories. This podcast is not just about the stories of people like Stevie Wonder or you, but the helpers. Are those people that come alongside anyone living with a disability? How do you hope these Better Together stories will influence the listeners?
Judy Robinet 32:34
Well, I hope that they will hear the stories and know that they can do something. I hope that they will know what others are doing. And that it does make a difference. You know, for me, I don’t know what to do with everyone that I meet who has a disability, or their families or their friends or their employers. But if I hear from other people, it will inspire me and serve as a catalyst for me to move forward. And now, I can do something, even if it’s small or if it’s big.
Jo Lynn Sheane 33:07
Thank you, Judy. It has been an absolute pleasure to speak with you. And I’m looking forward to hearing more stories in the future. Our thanks as well to trauma psychologist Dr. Bill McDermott for sharing his expertise. In our next episode, we’ll delve more into what trauma is, how to know that someone is going through trauma, and when trauma hits your family. We’ll hear again from Judy Robinet and her sister Christine Fuerth, as well as more from Dr. McDermott. I’m Jo Lynn Sheane. Know who you are, decide where you’ll go and choose a life worth living.
Jo Lynn Sheane 33:41
This was Better Together, thanks for listening. And thanks again to the Essex and District Lions Club, “Where there’s a need; there’s a Lion.”