TRANSCRIPT:
Michael Kutcher (00:00):
I tell you, if you sit there and be the victim, nothing's going to change. The scenario is not going to change. So in my eyes, your only path is to roll with the punches.
Jason Benetti (00:14):
Welcome to Let's Talk CP, the new podcast series about all things cerebral palsy presented by the Cerebral Palsy Foundation. Each episode features different clinicians, parents, people with CP and other experts talking about ways to help you better navigate your journey with CP. I'm Jason Benetti, play by play announcer of the Chicago White Sox and ESPN. And I have CP.
Cynthia Frisina (00:40):
But we never have said his name. I didn't say it. And you haven't said it yet. So I mean, because you called him Chris, so I didn't say what his full name was. Do you want to say his name?
Michael Kutcher (00:56):
Yeah, I don't care. If we want to mention it in an intro or anything. We've always talked, it's an interesting aspect, right? Just from a social point.
Cynthia Frisina (01:12):
Right, no, I get that. But when... I'm just thinking because you've called him Chris, which actually is his name, but his middle name is Ashton.
Michael Kutcher (01:22):
Yeah.
Cynthia Frisina (01:25):
So was it in college he switched to using Ashton is as his sort of acting name? Is that right? So I'm just thinking if we, when we like refer to anything in the podcast notes, what do you want? Do you just want me to use his name of Ashton Kutcher? Because you call him Chris, your family does, but how do you want us to call him, what do you want me to do?
Michael Kutcher (01:52):
Yeah, sorry to confuse the listeners on this. My brother's real name is Chris, and within the family circle he's always going to be Chris. But interesting note is when he was a model in New York, they had a number of models at the agency named Chris. And when someone would call for a photo shoot, they would say, "Hey, can you send down Chris?" And it got to be a little confusing, I guess. And then they were looking for unique ways to differentiate my brother and got ahold of his middle name. And they said, "Okay, well from now on, you're going to be Ashton Kutcher." So from a standpoint of his career, he goes by his middle name and that's kind of what your audience probably knows him as, that household name of Ashton Kutcher.
Cynthia Frisina (03:04):
Yeah, that could be. So question for you then. So anyone really in college or that young adult time and trying to navigate their way through life, romantic relationships, career, all of that, that's tough enough. But then when you have the challenge of having CP, you've got a heart transplant, and now as you just were talking about your twin is now becoming a household name and a supermodel. I forgot about that. I forgot about the modeling part, but how did that make you feel at that time? What was sort of thought process that you had about all that as it relates to you?
Michael Kutcher (03:54):
Yeah, from a twin development or twin aspect of it was very difficult, I felt like a piece of me was kind of leaving. I was losing some of my identity.
Cynthia Frisina (04:11):
You mean because he was moving on?
Michael Kutcher (04:14):
Yeah, yeah. Part of that. And then from a finding my own identity piece, I kind of felt like maybe I got the wrong end of the stick. It's "Okay, you've got a heart transplant, you've got a disability. You've got all this stuff going on with you. And then your twin brother's on another track where it seems like everything is in his favor and everything's going his way." And so I struggled with that for a while I think through college as well, and through that time period. And it really wasn't until maybe my later years, after college even, that I kind of stopped the whole woe is me aspect of it and thinking, and I think it was good segue to where I really had a hard time dealing with the way I was being viewed. And there was more of, "Hey, you're Ashton Kutcher's brother." Instead of being just Michael and for who I am.
Michael Kutcher (05:46):
And I started trying to go through mental and cope with that. And then don't get me wrong, with some of that come some good things and some opportunities. But I really was looking for a path. I was looking for an opportunity and to maybe make a name for myself and show exactly who I was. I'm not Ashton Kutcher's brother, I'm not a man with cerebral palsy, or just a heart transplant. I'm Michael Kutcher, and this is what I stand for, and this is what I believe in, and this is me as an individual. And later in the years, and Cindy, this is where you and I connected, I was seeing my brother had success from some of his philanthropy work. And then there came a point where I had kind of a wake up moment in my life about my disability. And I realized that maybe I could make a difference, and I could use being Ashton Kutcher's brother for the benefit of doing something and creating a passion of my own, of things that I believe in.
Cynthia Frisina (07:40):
And that is where our stories connected.
Michael Kutcher (07:43):
Yeah.
Cynthia Frisina (07:45):
Almost. Yes, let's hear about that, because I think that is... when you made the decision that you were going to become involved in advocating in this field, it really had a transformative impact on the field. And you and I have gone to Washington together and done other things, but tell us a little bit about how you made that decision to start just to use your voice for this purpose.
Michael Kutcher (08:17):
As I mentioned prior, I was very closed off I guess when it comes to my disability. I still had that societal kind of fear. And this is in my twenties, in my late twenties. I just felt there's no need to tell the crowd that I have a disability and the thought process once again, I'm now employed with a big corporation. I'm wondering what my employer would think, I'm thinking of once again, my dating life, I'm thinking of friends, and how they would view me, because I see how society views individuals with disabilities. And I didn't want to be a part of that.
Michael Kutcher (09:18):
And my brother was right in the height of his career and he was doing an interview with someone... and the interesting thing about being part of a celebrity's family, there's a lot of stuff that gets dug up. They want to know, especially early on when you're kind of rising up through the celebrity ranks, they want to know all about your family and all about everything.
Cynthia Frisina (09:57):
Yeah, so interesting.
Michael Kutcher (09:57):
Yes, very interesting. And through that, they learned that I had cerebral palsy and my brother actually made note of it on an interview that he conducted. So it kind of exposed me.
Cynthia Frisina (10:18):
And you were made I think. I remember it.
Michael Kutcher (10:23):
It was the exposure I really wasn't comfortable with.
Cynthia Frisina (10:24):
Yeah.
Michael Kutcher (10:26):
And I wasn't comfortable with it because of the reasons I said, and yeah, I hold no blame against my brother for doing so. He didn't know the feelings I had. But I'm so thankful that he did ,because it's given me an opportunity. And from that interview he did, it became more widely known that Ashton Kutcher's brother had cerebral palsy, and people started contacting me to hear my story and better understand my dynamics with my brother and various things. And one connection that was made was myself and an individual in Cedar Rapids that was actually hosting a gala for Reaching for the Stars. And she asked me to be the keynote speaker and the guest speaker for the event and talk about my life for cerebral palsy.
Cynthia Frisina (11:41):
I remember it well.
Michael Kutcher (11:44):
Yeah. And I actually told her no, I denied the opportunity at first. Because once again, I just did not want my community to know about my disability. I met with her the second time, and when I met with her I actually met her daughter, Bella, who was at the same time, the same age as my son. And yeah, she changed my life. I often say that Bella had cerebral palsy in Bella may not have the same abilities that you and I all have, because she had more of a severe form of cerebral palsy, but she had the ability to inspire me. And the ability to kind of mold my life and show me the path that I needed to be on. And it was from that day where I kind of realized, "Hey listen, I can combine being Ashton Kutcher's brother and have that platform. And I can be an advocate and a voice for Bella and other individuals with cerebral palsy. I can mirror the two, find my passion, and show the world who Michael Kutcher really is."
Michael Kutcher (13:12):
And that's the first time that I accepted the invitation to speak at the gala, and it was first time I ever told my story. And uttered the words "I'm Michael Kutcher, and I have cerebral palsy."
Cynthia Frisina (13:33):
And that launched you in a whole new direction for advocacy from then on, as well as a motivational speaker, and soon to be author. Maybe you would like to talk a little bit about what made you decide that you would write a book at this point in your life?
Michael Kutcher (13:54):
Yeah, well you're right, you did. That was the first time that I spoke and told my story and that night was the first time that you and I had met as well. There were so many people at that event and along the way in my support group, they really came out after I made that kind of disclosure that they supported me. And I realized that nothing changed, no one viewed me differently, no one had any comments. My life did not change other than having a huge weight off of my shoulders. And being who I was, and being proud of that. And then I kept hearing from individuals, I think you were the first one that night, that actually said "You have a great story. You have a very motivating, inspirational story and you need to do this. You need to tell your story more. You could really have a platform for speaking to people and inspire people."
Michael Kutcher (15:14):
And one event led to another event, led to another event. And then it just kind of grew into this.
Cynthia Frisina (15:22):
We had a lot of events, that's right.
Michael Kutcher (15:30):
It just kind of grew into this speaking platform and I've built it out, and I'm able to tell my story, and the reception's been amazing. It's difficult not to keep doing it when you hear people that you've touched, and you see how your story and how your message impacts people's lives and gives people. Not only on the disability side, on the organ donation side, on being a twin side, on a lot of things encompassed within my life. And I always tell myself that if I'm speaking to maybe 4,200 people, but if I just touch one person, then that's my mission. That's all I really care about. So that was the launch of my speaking career. And then I guess, a number of years ago, right around that time, you and I had the conversation about taking that story and praying it into a book.
Michael Kutcher (16:47):
And I drug my feet and drug my feet. And I know at times I've spoken to various people about writing it and trying to collaborate on it. And finally about two years ago, I just said, "Hey, you know what, if you're going to do this, then you either do it or you don't. But if you don't do it, you're always going to regret it." So I don't want to live in a world where years and years down the road, I have something that I regret. I know that this story would help so many people, but due to my own selfishness I just failed to do it. And that's what I didn't want, so it's been a long journey, but I'm in kind of the final edits of it and it's coming to a bookshelf near you in I would say the upcoming year.
Cynthia Frisina (17:47):
That's what I was just going to ask, I'm sure everyone is going to want to know when this book is coming out. And I've had the honor of being able to look at one of your rough drafts and I think it's going to be an incredible book that people will really want to read. So you think sometime in 2021?
Michael Kutcher (18:05):
Yeah. Once we get through our crazy year here, we're dealing with the pandemic. I would say that it probably should be ready to go mid to late summer of 2021.
Cynthia Frisina (18:20):
Well I can't wait for that. I hope I get a personalized, autographed copy.
Michael Kutcher (18:26):
Absolutely.
Cynthia Frisina (18:27):
For sure. We'll I have just a couple of last questions for you, because as you know, the Cerebral Palsy Foundation has a really large population of adults with CP. And there's just not enough health care, there's not enough information. There's just not enough out there for adults with CP. As now you're a father, you're a husband, you have a great job. Does your CP play any role currently? Do you have to make any particular modifications or have considerations in your day-to-day adult life now with CP or is it really not so much of a factor anymore?
Michael Kutcher (19:16):
I would say that I do, but I do so subconsciously. Because it's what I've kind of learned to adapt to. Funny story is, I'm of course 70% deaf in my left ear, so there's some things that my wife and I do to adapt to that. She knows that when we go on a date and we're sitting down at a restaurant or in a movie theater, she always sits on my right side. So little things like that, that maybe I'm not aware that they go on.
Cynthia Frisina (19:57):
Unless maybe if you're an argument, maybe she'd want to sit on the other side.
Michael Kutcher (20:07):
One of the great things is that if you're deaf in one year and you're sleeping on your good ear, you can't hear all the noises or the wind or whatever, but the downside is when you're sleeping with your spouse and you miss hearing them say, "I love you." It doesn't boast too well when you're not responding back. So there's some funny stories there, but in my professional life, I do find it a challenge. I don't have the mobility in my right hand as much, and I favor my left. So I've had to adapt, if I want to keep up and be able to type an email and various things at speedy pace, I've got to find ways to do it. I've got to find ways to adapt to this situation, to do it. It doesn't mean I can't do it. I just have to find another alternative to be able to do it to the ability where I'm comfortable and achieve the same outcome.
Michael Kutcher (21:24):
And that's the one power I think that individuals with disabilities have that maybe able-bodied people don't realize. We can do things just as much as you can, but we've got to try harder. We've got to adapt a little bit better to get the same results. So I find that as being a positive and not a negative. And so typing, right, it can be a challenge, but I've learned to type just as well as anyone else. I find myself having to maybe concentrate a little bit more when speaking with people, I've found myself having to slow down my speech. So people can maybe better understand me through my speech impediment, but it's all things that I've grown through my life to adapt to and to accept. And as I said, not play the victim of these kind of inabilities and I think I mentioned to you before, I really don't like the word disability.
Michael Kutcher (22:49):
I've found a new kind of form to phrase it, of calling it a diffability, Like we're different.
Cynthia Frisina (23:01):
Oh.
Michael Kutcher (23:02):
Because here's the thing is, "Hey, who wants to be all the same? I don't want to be like anyone else I want to be me." Number two is there's things that you can do, that I can't do. I'm okay with that. There are things you can do better than me, and I'm okay with that, and vice versa. So we're different, who cares? We're different. And we need to accept, personally, as an individual with a disability and as a society that we are different and accept what people can do that makes them different than what maybe people will struggle at or can't do.
Cynthia Frisina (24:02):
Yeah, absolutely. I think that is a really great philosophy because we are all different and there's lots of things that people do differently than other people.
Michael Kutcher (24:11):
Yep.
Cynthia Frisina (24:12):
For sure. 100%. That's great advice. And so one other question that I have, because we get this a lot at the Cerebral Palsy Foundation, do you exercise or do other things right now to keep your... because everybody has health that they want to keep in as good a condition as possible, but do you take time for self-care or exercise or different things? Either relating to or not relating to your CP.
Michael Kutcher (24:50):
I wish I took more time. I didn't realize how busy I am. So I laid everything out, I wish I did have more time for personal health, mental health, personal growth, and physical health with that. And many years ago, I ran a couple half marathons, and I enjoy running and I've started to pick it up recently. My wife is big into yoga, so she's got me into yoga and doing some yoga as well. And I really find it enjoyable and therapeutic, not only from a mental standpoint, but definitely from a physical standpoint. It helps me kind of loosen up.
Cynthia Frisina (25:40):
What's your favorite yoga pose?
Michael Kutcher (25:46):
My favorite yoga pose? I would say you caught me in a mind blank.
Cynthia Frisina (25:59):
I'm going to guess warrior pose.
Michael Kutcher (26:03):
No, I hate warrior pose. Anything that isn't strenuous I would go for.
Cynthia Frisina (26:12):
Child's pose?
Michael Kutcher (26:14):
Child's pose, that's exactly what it is, yes. Child's pose is probably my... or anything that's at the end of the workout is great. But I think that it's important for physical and mental health to have that. And it definitely helps me and helps me be a little bit more flexible and loosen up some of the muscles as well, because I've learned over the years that you never really know if it's CP related or not. That I feel like my muscle movement is definitely getting tighter and it could just be old age. I don't know.
Cynthia Frisina (27:01):
You're not old yet.
Michael Kutcher (27:04):
We're getting there, right? There's only one thing that's certain and time as well. And back to the conversation about the appreciation for time and stuff like that.
Cynthia Frisina (27:23):
Well, that's true. And then we all are dealing with the use it or lose it sort of the situation with our tightness of our muscles and things like that. But I do think that it's true that with cerebral palsy, especially, with the spasticity and things like that, that tightness and those other sort of secondary factors do become more of an issue as we age. And I think it's hard oftentimes for adults with CP to find healthcare providers that understand sort of that additional element as well. So I think that's a good reminder for everyone to take that seriously so that your mobility stays as strong as possible as we age, all of us.
Michael Kutcher (28:18):
I agree.
Cynthia Frisina (28:18):
Yeah, for sure. So my last question for you is a broad one. But whatever you might like to say on this particular topic, but if you had to either, or both, give advice to a family who might be earlier on their journey with a child with CP, and for other adults out there, young adults or adults of any age with a disability, doesn't necessarily have to be CP, but do you have any just last thoughts for them, or advice, or just positive motivational words? And when are you coming back to Washington DC with me again?
Michael Kutcher (29:05):
Oh once we get through this crazy pandemic, I would love to be back there and be invoking some change and fighting for some change and being a voice. Let's give through 2020 first, please.
Cynthia Frisina (29:25):
Yeah, let's do that.
Michael Kutcher (29:26):
In terms of inspirational words for parents out there, I think I would say, embrace it. So there may be struggles, and there will be struggles in the journey that you're on. And it's definitely probably a journey. And you feel it every day, there's ups and there's downs, and there's going to be bumps in the road. But there's a reason why those bumps are there, because I'm a firm believer... and this can go to families, it can go to anyone struggling with a disability is, you're not given anything that you can't can't deal with. It's how you view it. Like I said, you can either be the victim or you can roll with the punches. But I tell you, if you sit there and be the victim, nothing's going to change. The scenario is not going to change.
Michael Kutcher (30:57):
So in my eyes, your only path is to roll with the punches and realize that these aren't punches to put you down, that they're punches to build you up and make you a better individual. And they're actually opportunities for you to grow, for you maybe to learn a lesson in some things, to build relationships, to maybe find some things within yourself that you were unaware of, maybe the ability to embrace a different part of your life or aspect of your life you're not aware of or comfortable with. Whatever you're facing, whether it be a child with a disability or having a disability yourself, it's not a setback, it's an opportunity. So once you start viewing it as an opportunity and embracing it, doors open up and you start to see the world in a whole different light.
Cynthia Frisina (32:21):
Well, those are very wise words. And Michael, thank you so much for being a guest on our podcast today. I know everyone is really going to enjoy this conversation and just how open and free you've been with all of your insight and your story, and we cannot wait for your book to be published. Do you have a name for your book that we can all look forward to, or is that still under wraps?
Michael Kutcher (32:44):
I haven't really settled on one and I kind of want to hold that under wraps until I have a final disclosure, but it will definitely be coming out soon, and thank you for giving the kind of heads up with that and for all of your support along the way.
Cynthia Frisina (33:05):
Absolutely, Michael. Thank you for being a good friend both to me and to the Cerebral Palsy Foundation.
Michael Kutcher (33:13):
Thank you.
Jason Benetti (33:13):
Thanks for joining us for this episode of Let's Talk CP. I'm Jason Benetti, CPF ambassador, and sports television announcer. If you like our show and want to know more, please visit our new CP resource page, at cpresource.org, where you can listen to all of our episodes and subscribe so you'll never miss a show. While you're at it, if you found value in Let's Talk CP, we'd appreciate a rating. And please tell a friend or another family member about the show to help others and increase cerebral palsy awareness and education. Be sure to tune in to Let's Talk CP for our next episode.
Cynthia Frisina (33:51):
This podcast represents the opinions of our guests and the content should not be taken as medical advice. Each person and situation is unique, so please consult your healthcare professionals for any medical questions.