Transcript #72: A Sibling’s Perspective on Disability and Human Potential

Human Potential at Work Podcast Show Flyer for Episode 72: A Sibling's Perspective on Disability and Human Potential

Human Potential at Work Podcast Show Flyer for Episode 72: A Sibling’s Perspective on Disability and Human Potential


Guest: Kevin Ruh       Guest Title: Chief Marketing Officer

Date: September 7, 2017            Guest Company: Ruh Global Communications               

       

[Intro music]

 

Debra:                     Hello, everyone. This is Debra Ruh, and you’re listening to Human Potential at Work. My guest today is Kevin Ruh, and Kevin is the Chief Marketing Officer for Ruh Global Communications.

                                    Kevin manages our social media teams and is very, very good on social media. Kevin also, you might recognize his last name’s the same as mine, and Kevin is my son, and Sara’s brother.

                                    So, today we want to talk to Kevin about his experiences growing up as a sibling of a person with a disability. And also, we want to talk a little bit about millennials. So, Kevin, welcome to the program.

Kevin:                      Thank you for having me, Debra.

Debra:                     So Kevin, of course I know that when you were born, Sara’s older than you, so this is all you ever knew in your life. But, I know that there were things that I worried about. About having a child with disabilities, especially when Sara was going into middle school. I really worried, as a lot of parents do, that you know maybe there might be some bullying and people would not be nice to Sara, because she had a disability.

                                    And I worried about that, not because it was grounded in any personal experience, but you know, I worried about a lot of things when you guys were in middle school. But what actually happened was that really the kids were really, really nice to Sara. As a matter of fact, they were nicer to Sara than they were often to each other, and certainly to you. And that really surprised me.

Kevin:                      Well, Sara’s a lot more outgoing than most people, too. And you know, you can say that a part of it might be attributed to her being born with Down syndrome, or trisomy 21, which is what she prefers.

                                    But she’s such a kind outgoing person that people just love to be around her, and she’s so bubbly. And even if someone would be negative towards her, she wouldn’t let it bother her in a way that would ever bring her down. You know? It’s like things that bother her, she doesn’t get bothered by the same petty things. Most of the time. You know, she goes through, I know more recently you’ve been dealing with her moodiness, or not even sure if angst might be the right word. Adult, midlife crisis maybe.

Debra:                     Right. I think part of it is that, you know, Sara sees you, her little brother getting on with his life. You know? Having your own place, going to college, even though Sara also got some college experience. But, I think sometimes it’s hard for Sara because she sees her friends from school, and her brother and others getting in relationships, getting married, and doing things that she considers a normal part of life.

                                    And she doesn’t perceive that she has some of the same options. So, I think some of the behaviors that we’ve walked with Sara over the last couple years is because Sara’s frustrated with her … Assuming she doesn’t have the same choices.

Kevin:                      Well, and I think part of that, too. Part of Sara’s frustration is that she’s thinking of all these expectations of life, and then seeing that her life isn’t the perfect expectation of the cookie-cutter, exactly what you expect everything’s going to be.

                                    But, Sara’s not unique in that regard, as most people will explain to you. They have lots of expectations and life goes different. Life is not something you can just plan out like that for anyone. And even if you do, things change so much that your plans are meaningless.

                                    But, Sara struggles with grasping that, I think, too. She really wants things to be one way for herself, but you know, things are different. Maybe she won’t have a driver’s license, maybe she won’t live 100 percent on her own, independently, without a little support. But, you know, most of us need support all the time anyways, whether we’re willing to admit it or not.

Debra:                     Yeah, that’s a really good point, Kevin. And it’s interesting, because I know that she decides what her life should look like based on movies, and television, and things like that. Sara’s very active.

Kevin:                      [crosstalk 00:05:05]

Debra:                     Yeah, I know, we do all don’t we? We say, “Oh.”

Kevin:                      And that’s part of society showing us these things. The ideals and everyone knows you get married, you have two and a half children, and you go to your nine-to-five job. And it’s not always like that, things are different.

Debra:                     I know. And I, as somebody that has struggled with control issues in my life at times, I think is a good point you brought up in that you understand exactly how your life’s gonna work and you’re controlling everything. And then of course life happens, and it’s like, “Oh. Well, I certainly wasn’t expecting that to happen.”

Kevin:                      Well, and yeah. Quote, unquote people with disabilities, like, you consider yourself maybe to not be a person with a disability. Well, people like you all the time, things happen and maybe tomorrow you will be … You know, have an impairment that you didn’t have before. And you’ll have to adapt to life. It doesn’t end, and it’s not different.

                                    Life is just life. And unfortunately it takes on so many different forms that you kinda have to roll with that. It’s tough. You don’t get a choice a lot of the time.

Debra:                     I know. And I think that’s a really good point. I know that we’ve been walking some interesting steps both with my mother, that moved from Florida to Virginia because of health reasons. And then also your father recently, well not recently but he’s now wearing hearing aids because over the years he sustained significant hearing loss. And he’s also walking some other paths right now.

                                    So, life is about contrast, I think. And there are no guarantees, and we just have to live as authentically as possible. But, let’s go … One thing that I … And I know you can’t represent every millennial in the world, but I’m actually very, very hopeful about millennials because just that example I was given earlier about assuming that maybe Sara would get picked on when she wasn’t at all.

                                    As a matter of fact, you and your peers all picked on, you know, got picked on. But, not so much Sara. It was almost like the kids felt Sara was off-limits. And I remember a time when we went to camp and some other kids that didn’t know Sara came to camp, and a couple of kids started picking on her. And the kids from the neighborhood were like, “Uh uh. No. She’s off-limits. You’re not going to be mean to her. She’s our friend. She’s cool.”

                                    And they taught very quickly in a very authentic way, the other kids to respect Sara. But I didn’t necessarily see them do that with each other.

Kevin:                      Yeah, the whole bullying talk right now is legitimate. I mean, I don’t think anybody should be made to feel like so terrible and people bullying them. That’s, of course, it’s a bad thing. But, part of it too is how you’re gonna take it. So, if someone shoots you a dirty look, and you’re upset about that, then you need to check your own energy, because that dirty look has maybe nothing to do with you. Maybe everything to do with you.

                                    But that person was obviously in a different head space, and you’re letting that change your own. Sara, I don’t think, would let that happen. If somebody snickered at Sara on the street, she would probably take it more as like, “Oh, that person’s laughing.” And you know, as opposed to you assume … You have to assume the positive intent, I guess.

                                    And that’s what Sara’s really good at, most of the time, is just picking out the most positive of anything. And making herself happy even if she is going to a place of fantasy with herself. But she gets really excited about whatever. And she’s very authentic in that way. And, yeah, people like that. That’s why, I think, she has had a lot of friends. And less experiences with people being negative towards her, because she’s too positive to let that affect her. And for some reason that positivity works more than the negativity ever could, and I think that that’s a lesson in a lot of aspects of life, too.

Debra:                     I agree. And I think that’s well said. And the reality is, a lot of people with disabilities are bullied. And so, Sara maybe was more of a lucky one, being an individual with trisomy 21, or Down syndrome, that wasn’t bullied as much.

                                    Maybe part of it is because she had her little brother. Kevin and Sara wound up being in the same grade, because we held Sara back in elementary school just to give her more time to work on the basics. And Kevin and Sara wound up being in the same grade. Starting in the second grade, they were always in the same grade.

                                    And Kevin was always very kind and always included Sara, and all of his friends included Sara. And so Sara had a really, really good experience in high school, but some of her peers did not. A lot of … Some of her peers with autism, some with other Down syndrome that weren’t as outgoing as her, they did not fare as well.

                                    And you know, there was one story on the bus that I was hearing about. And as a mom, I was very concerned about it. But, Kevin was like, “We got it. We got it, mom. We don’t need you to get involved.” But, I remember there were two girls that lived down the street from us, and they would get on the bus right around the same time that Sara and Kevin would.

                                    And Sara got on the bus and she saw these two girls, and she said, “Hey, can we be friends?” And they said, “We’re not your friend. No. We can’t be friends.” And it was hard for Kevin to see that because it really made him mad. But one thing he had to learn as a sibling was that sometimes you gotta let things go that you don’t have control of too. And so, then he proceeded to tell me every single day Sara would get on the bus and she would go up to these two girls and say, “Hey, are we friends today?” And pretty much they’re like, “No. We’re not friends.”

                                    Next day, “Are we friends today?” “No, we’re …” And she wore them down. Finally after, I don’t know, a month of this, she gets on the bus and the girls are like, “Yes. We’re friends.” “We’re friends? Yay.” And she gets all excited.

                                    I don’t know if you want to comment on that story.

Kevin:                      Well, I think that’s a lesson in wearing someone down with kindness, too. Is eventually even if someone’s really being nasty, and you’re trying so hard to be positive. And more and more positivity, adding all that, and just really not letting them bother you.

                                    At some point, they really have to take a step back and think about the way that they’re doing that. And I think about this, when people are yelling at someone who’s trying to do their job in a service, maybe at a restaurant or something. And they’re just screaming at a waiter. And it’s like they don’t have a lot of control, they’re not getting paid a whole lot. And they’re trying so hard, because this is their job. But, you know, you’re … I think when you think back on that, you can’t think back positively on screaming at someone for something out of their control and making someone else feel bad.

                                    I don’t think ruining anyone’s day makes someone’s day. But, I mean, wearing someone down. Eventually they have to think about, “Why is this person still being nice to me? I’m being so nasty. And yeah, why, why, why am I being so nasty?”

                                    So maybe it’s a good lesson to be gleaned in there, too. Like, even if you are having a bad day. Like, really think about it. And it might help bring your day up a little bit. Not to wallow in misery, but just be thankful for everything that you do have. You know?

                                    And like, the kindness that is most humanity.

Debra:                     Right. And so, Kevin, I know that all you know is having a sister, one sister. And your sister was born with Down syndrome. But, how do you think growing up with a sister with Down syndrome was different for you? How is your life different because of Sara? And I know that’s a tough question because this is your life. But, do you think there were disadvantages? And I know there were disadvantages of having a sister, a sibling with a disability, because sometimes your father and myself, we, you know, sometimes I know that we had to pay attention more to Sara, and we worried more about Sara in some situations.

                                    But maybe there are also some benefits to it. I remember so clearly something that you said to me one time. It was, once again, in middle school and there was a Halloween dance at school. And so, or maybe it was around the holidays, around the Christmas, you know, the winter holidays.

                                    And there were two different dances. There was one at the middle school. And then there was one at this recreational program for adults with disabilities. And I remember so distinctly that you went to the dance. Both you and Sara went to the dance. Sara actually became … She got princess of the dance, which kind, kind people. Kind young people at this school, that were very kind to Sara. And she still talks about winning the … I think it was the Halloween dance, she was the Halloween princess, or something.

                                    But, she got a big thrill out of that. But, what happened was, the boys were on one side of the room. The girls were on the other. And you know, going across that void was hard to do. Only Sara, pretty much, and some of her peers had the nerve to go across to the other side. But then, like a couple days later we went to the dance with all these adults with disabilities. And I remember you saying, “Now mom, this is a fun dance.” Because nobody cared what they looked like, nobody cared how you were dancing. Everybody was just having a blast.

Kevin:                      Yeah. I mean, the pros and cons, of course, like you think about your parents not spending as much time maybe with me. Or you know, things … I can’t … There was all kinds of pros and cons. And like, your expectations of having a normal sister that you can talk to, or who knows what that normal expectation should be, because I think anyone with a sibling can tell you, it’s not the movie ideal of like the perfect relationship.

                                    And if that is what you have, then that’s awesome. And you should be very thankful. But, it’s part of life, too, is that Sara has always been my sister, and will always be my sister. For better or for worse. For trisomy 21 or no, she’s the best sister that I would ever want. You know? And I wouldn’t take her back.

                                    But yeah, and there are a lot of pros to having Sara as a sister, too. I think I learned about people. And people really show you who they are. And sometimes you see a little bit of negative stuff, but for the most part I feel like everyone is just … You see the biggest burly men with big tattoos and a huge beard, and look like they’ve been living in the mountains for six months just hug Sara and melt, smiling. Because Sara’s so joyful, and it’s amazing to get a hug from Sara.

                                    But, you know, you get to see a lot of people. Our relationships with Sara can be very complex. And she gets that as well. The relationships, complexity with all kinds of people. We all deal with that. There are people we love, and then people we hate. And then people we hate to love, and people we love to hate. So, it’s contrast. And that’s part of life that I think Sara’s helped me learn about.

                                    But as the dance, you know, I will never forget seeing all of my peers from school. Just the boys and girls are separate at that age, you know. Middle school age. And there’s music playing, but it’s like two separate walls of people staring at each other like, “I wish I could go over there. But, nope, not gonna happen.”

                                    So, then going to the Christmas party at the … I think it’s the Arc program that we used to go. Everyone would be cutting loose, and throwing down on the dance floor. It was ridiculous and so much fun.

                                    And yeah, you don’t care how you’re dancing and I think that’s what dancing should be about, too, is you know, having fun with it. And that’s what something Sara’s always taught me is that you should try to have fun with any and everything you’re doing. And yeah, that’s a good lesson, you know? You’re only as miserable as you want to be. And Sara doesn’t like to be miserable. So, most of the time she’s very positive and happy.

Debra:                     And Kevin, what do you think about the future? I mean, is this something that … Obviously, in our house, we’ve been thinking about the future a lot, especially walking the path with my father dying, and my mom getting sick. And then Ed’s father also walking some health issues. But, how do you think your life is? I mean, do you ever worry about what are the responsibilities you have as Sara’s sibling? You know?

                                    If your parents get to the point where we can’t take care of her? Because the reality with Sara, even though Sara is very high-functioning in a lot of ways. Sara still does need the supports to … She can’t really live all by herself, independently. She’s gonna have to have support. As Kevin mentioned, Sara can’t drive.

                                    Sara’s smart enough to learn the laws. She even could, with a lot of practice, learn to operate a vehicle. But, there’s that third thing that you need when you’re driving a car, the instincts to move quickly. And we had Sara tested up at Woodrow Wilson Rehab Center, which is not that far from our own. And they just said that they really did not think that she had the reaction skills to drive. So, she still talks sometimes about driving and she also, Sara, will make up things to explain something to her.

                                    For example, Sara’s like her mom, and she’s overweight, and she’ll get gas moving around in her stomach. And she’ll say, “Oh mom, the, the baby’s kicking.” And it’s like, oh, well, no, you’re not pregnant, but, “No, no. I am, I am.” Because she sees it on television.

                                    And sometimes when Sara’s explaining something, you almost have to listen to what she’s saying, and then interpret what that is she’s saying. So, when she’s saying, you know, “Oh, the baby’s moving around.” I have learned to interpret that as maybe Sara has a stomach ache.

                                    And I know, Kevin, you’re really good at interpreting her. But, I’ve also had some of her friends … She has quite a few friends with autism. And they’ve said, “Sara is lying about being pregnant.” And it’s like, well, it’s not that she’s lying, it’s an interpretation. Anyway, sometimes our life is very interesting.

                                    Always our life is very interesting. But, we have to do some interpretation sometimes that maybe other families don’t have to do. And I don’t know if you want to comment on that, Kevin.

Kevin:                      Well, yeah, I mean there’s … She has trouble at times saying what she really means. And you know, who doesn’t have that? That’s a human problem. But yeah, I think Sara does this too, because as I said before, she gets really excited. And these prospects of her being pregnant, all these things are so exciting to her, of course.

                                    But, you know, obviously she’s not pregnant. And yeah, she’ll get upset at you if you’re like, “Well, that’s not true.” So, when she talks to me about those kind of things, I try really hard to just redirect the conversation to, you know, obviously, back to reality.

                                    But yeah, as you said, there is something to be learned. If she’s talking about how her stomach’s moving around, then she’s obviously … Something’s going on. And Sara isn’t the type to … She has a very high pain tolerance and stuff. So if Sara’s telling you, like, “Hey, my foot hurts.” As her friend says, “She’s lying.”

                                    It’s like, well she’s lying about being pregnant, but she is saying that something’s going on with her stomach probably. So, it’s a red flag. And that’s something that’s unique to Sara, I think. But, there are a lot of people who have similar experiences, I’m sure. Dealing with family members or friends who just, they don’t know how to say what they want to say, but you kinda have to look through it all. And then try to understand where they’re coming from.

                                    And it’s something we all have to do. I think even internally. We have to think about why you’re feeling a certain way sometimes. And really examine that. And all of this is healthy, and it’s something that Sara is kind of teaching us to do. Is like, to wade through what you’re really saying and you have to take on a more active listening role to really understand what or why are you talking about this? Okay, well you know, obviously she’s feeling a certain way. She has maybe she’s seen TV a lot of things that are saying, like, “Well, you’re a woman.” Or, you know, I’m sure there’s biological reasons that she’s feeling like she wants to be pregnant.

                                    You know there’s baby crazy. There are hormones that will tell your body, like, “Hey, you should probably be pregnant.” I don’t know how definite …

Debra:                     Right. How biologically these things work. Do you think, Kevin, that you are a better communicator, and a better active listener because of having Sara as a sister?

Kevin:                      I think Sara has been one of my great teachers in that, but I think my relationships with all kinds of different people, friends, you know, romantic people, family members, of course. And even strangers, we have to … Yeah, you have to take on that active listening role. Otherwise, you’re not really listening, and I know some people struggle with this.

                                    When I was in elementary school, one of our teachers told my mom that I should be tested for ADHD, or ADD. Or maybe just be put on Ritalin, I think maybe was the suggestion. But, yeah, I have never been tested for ADD and I don’t think that I would qualify as attention deficit, but so many people struggle with that. And I think people who do struggle with that really are owed people actively listening to them, because it’s hard for them to articulate everything. And not be listened to by someone who’s just waiting for the next thing.

                                    But then, at the same time, those people, you have to learn that you can talk to people like that too. And they want to active listen, but it might just be a little bit more of a struggle for them.

                                    So, you know, it’s an adaptive thing too. But really, you know, taking time to listen to one another, I think, would heal a lot of what ails us all as a society, because it’s something don’t do enough. And you know, there’s maybe not enough time when we’re all so busy, and it’s tough to take that time to really sit there and actively listen to someone.

                                    But if you really do, you learn so much and it becomes such a learning experience if you let it. And I think that’s important.

Debra:                     I agree. So, Kevin, I think one thing that I’d like to see. I’d like to see us having, as a society, more conversations with siblings, with individuals with disabilities. I also have noticed that many people in the professional work that we’re blessed to do all over the world, many of those people actually have siblings, and have been impacted. And it’s changed their lives and they actually are heavily involved in the inclusion of people with disabilities.

                                    And I know Kevin, you chose, you graduated from Virginia Commonwealth University with a fine degree in arts. And I know you’re very artistic, which is one reason probably the social media, and that communication style speaks to you. But, you are actually involved in the work of disability inclusion. Certainly because you’ve been exposed to it. And I know you’re surrounded by a lot of other people that are doing that as well.

                                    But, how do you think … What do you think for the future? When you look at the future, both as for your career, but also as a sibling to Sara that is 30 years old now, and we’re walking the path. But, what do you think about the future and about other siblings of individuals with disabilities? How having the impact of growing up with a person with disability, how has it changed your lives? And what do you think about it from the perspective of the future? The future, meaning as far as society evolving, hopefully.

Kevin:                      I think being a sibling of a person with a disability is something that will really change your life. But, I think it extends beyond that, too. Most everyone has an impact in their life, or has had experience of someone with a disability. And it’s usually someone that we care about, whether they’re friends or a friend of a friend. Or, your friend’s brother, sister, or you know, who knows, there’s so many … And it’s a community. It’s a huge network of people. And the one thing we all have in common is that we care and have learned that, you know, people with disabilities are people, and not a different who knows.

                                    But there’s no … We are just all people. And once we start to learn that, you know, and whatever teaches you that. Your friends, or your family, anything like that that teaches you, you’re evolving. You’re learning more and more. And I think that’s what the future is gonna be more of, is people understanding that this is evolution to not cast out portions of society that we maybe don’t understand at first glance.

                                    You know, the prejudgment, I hope, is going away more and more. And I think, the more exposure online and stuff like that, whether it is a mixed blessing at times, but part of it too, more awareness, I think is such an important thing for us to take away from what the internet and this connectedness is bringing. We are more connected as a species of human beings.

                                    We need to stop letting all of the differences and politics and all of the differences in race, religion, gender, sexuality. All the way down, to anything, we are people at the end of the day. We need to treat other people with that same respect and love that you deserve. Everyone deserves that.

                                    Even if you’re a hateful person, and you believe in terrible stuff, you can take a second, maybe, and just be like, “Do I want to be this? Do I want to be hateful? Do I …” You just, I don’t think anyone really does deep down. I think you can appeal to that humanity that’s within all of us.

                                    And I think that’s a good thing, that humanity within us all. Even if you’re in a dark place at this moment, your humanity can help you come back. We’re that community this one species, we are and we should strive to help one another. And bring us all back together. You know? As opposed to bringing apart one another.

Debra:                     Yeah, that unconscious bias really is causing a lot of problems. But, Kevin, thank you so much for being on the program today.

                                    I think this is a topic that we need to explore more as a society. And I know that the work that you’re doing. Making sure that siblings, as well as all … You know, your friends that have … A lot of your friends, even in your twenties, have experienced disabilities in a lot of different ways.

                                    You know, several friends getting really bad cancer, or friends with seizures. Friends with autism, ADHD, and it just makes you realize that we say this all the time, being a person with disabilities means you’re a person.

                                    And we are living in these fragile human bodies sometimes, but we all can add value. So, I’m very hopeful about the millennials, and as a mom, I think you all can understand why I would be very proud of Kevin Ruh.

                                    So, Kevin, thanks for joining the program today.

Kevin:                      Well, thank you for having me. And I guess, to speak on what you just said, too. The only thing I would want to add is that you’re right, and life is very imperfect. But at the same time, very beautiful. So, I’m glad we’re all in it together, guys.

Debra:                     I agree. So, thank you, Kevin. Thank you everyone for listening. And I will bring Kevin back on, and I’ll bring him on Facebook Live so you can see how tall he is, with tattoos and a beard. Anyway, everybody have a great day. And we will talk to you next time on Human Potential at Work.

 

[outro music]

 

You’ve been listening to Human Potential at Work with Debra Ruh. To learn more about Debra and how she can help your organization visit RuhGlobal.com. If you’ve enjoyed today’s episode and you want to make sure that you don’t miss any future epsiodes, go to itunes and subscribe to Human Potential at Work. Thanks so much for listening and we’ll be back next week with a new episode.