Our guest this week is Ben Mattlin of Los Angeles, CA a disability advocate, an author, educator and writer.
Ben was born in New York City in 1962 with Spinal Muscular Atrophy (SMA), a congenital muscle weakness. He attended the Walden School, Rudolf Steiner High School, and Harvard University, graduating cum laude.
Ben and his wife, Mary, have been married for 34 years and are the proud parents of two adult daughters.
Ben is a freelance writer and frequent contributor to Financial Advisor magazine. His writings have appeared in the New York Times, LA Times, and The Washington Post, to name a few.
He is also the author of: three books Miracle Boy Grows Up (2012), In Sickness & In Health (2018), and Disability Pride: Dispatches From A post-ADA World. (2022)
Ben reflects on being mainstreamed educationally, his objections to being labeled and misrepresented by the National MDA as a youth and how he has gone on to live a full and rewarding life as a husband, father and being gainfully employed, despite being confined to a wheelchair.
It’s a fascinating and uplifting interview, which we’ll hear on this week’s episode of the Special Fathers Network Dad To Dad Podcast.
Show Links –
Email – firstname.lastname@example.org
LinkedIn – https://www.linkedin.com/in/ben-mattlin-3b8b452/
Website – https://www.benmattlin.com/
SFN258 Ben Mattlin
Tom Couch: Special thanks to Horizon Therapeutics for sponsoring the Special Fathers Network Dad to Dad Podcast, working tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics’ mission at HorizonTherapeutics.com.
Ben Mattlin: I think it’s about newly disabled people, not to stigmatize it, not to be ashamed. As I said before, when you learn about the disability community, what it’s always done, how disabled folks have always contributed to the world, that society and culture. You can’t help but feel proud. You can’t be ashamed.
Tom Couch: That’s our guest this week, Ben Mattlin, a writer, educator, and essayist. Ben was born with spinal muscular atrophy. He’s the author of three books, including Miracle Boy Grows Up and In Sickness and In Health. His writing has appeared in the New York Times, the LA Times, and the Washington Post to name a few. And he’s got lots to say, which we’ll hear this week on the Special Fathers Network Dad to Dad Podcast. Say hello now to our founder and host, David Hirsch.
David Hirsch: Hi, and thanks for listening to the Dad to Dad Podcast, fathers mentoring fathers of children with special needs presented by the Special Fathers Network. Please support the 21st Century Dads Foundation by contributing to Dads Honor Ride 2023, which is a 3,100-mile seven-day bicycle ride taking place from June 17th to the 24th, starting in Oceanside, California and ending in Annapolis, Maryland. I’m one of the four riders and would really appreciate your support. Please make a tax-deductible contribution by going to 21stCenturyDads.org.
Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for dads to support dads. Now let’s hear this fascinating conversation between Ben Mattlin and David Hirsch.
David Hirsch: I’m thrilled to be talking today with Ben Mattlin of Los Angeles, who’s an author, editor, commentator, the father of two adult daughters, and who himself was diagnosed with spinal muscular atrophy six decades ago. Ben, thank you for taking the time to do a podcast interview for the Special Fathers Network.
Ben Mattlin: Delighted to be here.
David Hirsch: You and your wife Mary, have been married for 34 years, and the proud parents of two adult daughters: Paula 27, and Rhonda 23. Let’s start with some background. Where did you grow up? Tell me something about your story.
Ben Mattlin: Sure. I am from New York City, born and raised, upper middle class, sort of intellectual parents. When I was about six months old they noticed I was not developing as my older brother had. I couldn’t sit myself up. And if they sat me on a chair on the floor, I was easily knocked over. I was a floppy baby. That was the diagnosis, which I guess is still used for unspecified situations. And it took time to get a diagnosis. This was early ’63. I’m not even sure spinal muscular atrophy was a known thing at that point. It became clear I had amyotonia, which just means muscle weakness, lack of muscles. I had full sensation from head to toe and full cognitive functioning, but no muscles.
David Hirsch: You grew up in New York City, you had an older brother, traditional family, mom and dad. And I’m curious to know what was it that your dad did for a living?
Ben Mattlin: He was actually the first editor, founding editor, of GQ when it began. He had come from a business-oriented family. His father, whom I never met, was a businessman. His older brother was a businessman. And my dad was the nerd, the bookish one. He didn’t play football. I think they kinda made fun of him. GQ in those days, it started as a quarterly. It’s what the “Q” stands for, “Gentleman’s Quarterly.” And he saw it I think as a bulwark against fads and trends, as a sort of last bastion of the old fashioned gentleman. Or he tells it to me, I saw it, he says, as my own personal little literary magazine.
And he’s very proud of publishing some… they were the first publisher of some big writers. He went to work for another young magazine called Institutional Investor and he had to learn more about the business world. And he did that through retirement, basically.
David Hirsch: He also went to Harvard College, right? So it’s not even though he might not have been like his brothers, business-oriented, he is very well educated, right?
Ben Mattlin: He certainly prides himself on the books he’s read and so forth. Yeah, I grew up around book people, magazine people, some newspaper people. It was the adult world I aspired to enter.
David Hirsch: Out of curiosity how would you describe your relationship with your dad?
Ben Mattlin: At the moment it’s pretty good. It was rough for quite a while. I always felt, I still feel, that he has some difficulty accepting my disability. I think he sometimes still seems surprised that I still, it’s still there. My wife says she worked at a household, my dad and stepmother, helping with my little brother, half brother, when he was a baby. And her memory is that my dad said, asked her permission and he apologized. I have this older son in a wheelchair. Is that okay with you, kinda thing? He’s always a bit apologetic about my disability.
That was what the early ’90s I guess, early two thousands. I developed ulcerative colitis, which my older brother has as well, but mine I guess, is more serious for some reason, unrelated to my spinal muscular atrophy. Anyway, I ended up in the hospital end of 2007, 2008. And I had to have my colon surgically removed. And due to surgical error, I went home with internal bleeding, which went septic, and I was rushed back to the emergency room.
I spent about three months in intensive care until I nearly died. Multiple, many comas and blood clots and pneumonias. The whole year was rough. She said, I felt like I’ve had a second life. It’s only after that I began getting books published and all that. But anyway, while I was out of commission for so long, I guess my dad was 80 then, and he lives in the Washington DC area. He came out here, he took a hotel room. He’d come to the hospital every day. He went home for a week at one point, but he really sat with me and my wife would sit with me. We had small children too. It was a rough time.
And I was certainly very touched by his attentions. But back to my point, the bills started to pile up. And my stepmother in particular, who was, I guess she retired already at that point, but she’s very financially on the ball. She saw the bills and she realized what was going on. And so she started supporting us financially as needed ever since. And that’s a lot easier. She’s a little more reliable in that regard than my dad ever was.
There is truth in the idea that my dad does sometimes, still I think, worry about me. All parents do, but a little over much even when my work struggles, he would try to be helpful and what I might misinterpret as his disapproval is actually just his concern, his fear for my safety. His love, you could say. Yeah, he’s 95. He’s a lot more, in a sense, disabled now himself. So we have a lot more in common and that’s been nice. That’s been nice. So it’s… at the moment we’re pretty good.
David Hirsch: Yeah. Thank you for sharing. And if I could paraphrase what you’ve said, because you’ve gone through a lot of different experiences as a family, father-son relationship, that there’s a tension. That’s what I hear you saying. And the tension tightens and loosens. That’s my interpretation. And you can look at it from different perspectives at different points in time in that relationship. And the fact is that he’s been there. Even though your parents were divorced which created a lot of turmoil, which is hard to describe and hard to quantify, your dad has been there, from the very beginning on your behalf, and he continues to be there for you physically and financially, which is a lot more than I know others can say. So when you’re thinking about your dad, just to ask one final question before we move on, I’m wondering is there an important lesson or two that you’ve learned, maybe that you’ve tried to incorporate into your own parenting, that you picked up from your dad, a result of your relationship with your dad?
Ben Mattlin: Hmmm. You don’t wear brown shoes with gray slack? No. Fathers, I think like to be the fun parent. I’ve heard women complain about, why do I have to be the bad guy? Dads like to play, like to have fun. And my dad is, in some ways he’s still a big kid. I think he likes taking my girls to Disneyland more than they do. He loves going to theme parks, he loves movies, always wants to play games, chess, checkers, whatever. I think I tried to have some of that fun with my daughters when they were growing up. I certainly told them stories a lot. Yeah. I was a storyteller. My dad used to tell us stories and we thought they were marvelous, as silly as I’m sure they were. I think there’s that. My older daughter now, it’s very sweet actually. She tells me of fond memories growing up. There’s stuff that I’d forgotten about that we did together. And I think, where the hell did I get these ideas to make everything fun? Stupid things, little walks in the park or whatever. And maybe some of that came from my dad, his sense of fun and games.
David Hirsch: Yeah. Thanks for sharing. He sounds like quite an individual and I just admire your being able to reflect on that and the fact that he is still alive at age 95. So I’m hoping that when your episode airs that he’ll be there to listen to it and appreciate all that you’ve been able to accomplish.
I know that there was a reluctance to follow in your footsteps and your brother’s footsteps to go to Harvard. I remember in one of your books you recounted the story about looking at Amherst and being very interested in going to an Ivy League school. You went to Harvard. You graduated from Harvard with a BA in social studies. And I’m wondering, when you graduated you’d already mentioned that there weren’t a lot of opportunities for somebody with your disability, and it was difficult to find work. But I’m wondering where is it that your career took you from that point forward?
Ben Mattlin: Oh, I looked for any connections I could where I could use my writing and editing abilities. I thought, this I can do. I can sit down at a table with a pencil and paper. I wasn’t sure how I was gonna use a computer. They were new, but I knew I couldn’t do a physically active job, but a sedentary job, like writing and editing. I had abilities.
I interviewed at publishing houses and magazines and newspapers. Anyway, somebody knew somebody at the Los Angeles Business Journal, a weekly tabloid paper. They had an opening and they were interviewing that very afternoon. So I had my attendant get me out of my chair and pull off my jeans, and I put on a suit and tie, not knowing in LA nobody much wears a suit and tie. I went to the offices. He was a nice guy and he saw some of my clippings from student publications. I was very flattered. He prepared me to be a writer for the New Yorker magazine and I thought, wow, this is great! But his opening was for a librarian or something, and it wasn’t really right for me. So he gave me an assignment as a freelancer and I ended up on the front page and that’s how my career started.
There were referrals to other mostly trade magazines and I interviewed people by phone with a little tape recorder as we had in those days. And it wasn’t physically, it was difficult. And I struggled to figure out the mechanics of it. I really could not type on a keyboard. Not sufficiently, very slowly, but in those days. Not at all now.
I was a very early adopter of voice recognition computer software, which really opened up the world to me. Once I could use voice recognition computer, my productivity went way up. And then with the internet became that much easier to interview people and make contacts to do research. And most recently with the COVID pandemic, people are more open to remote work.
So I finally got hired for full-time job just last year for a magazine I’ve been contributing to as a freelancer for, I don’t know, 12 years or something. They had an opening and…
David Hirsch: Sorry, are we talking about Financial Advisor Magazine? Just to be clear?
Ben Mattlin: Yes. Yes, indeed.
David Hirsch: Yeah. That’s fabulous. Congratulations on finally finding a job.
Ben Mattlin: Thank you. I get pretty busy freelancing and I like that freedom. So that’s been great.
David Hirsch: Thank you for giving me a fly by. It sounds like when you look back on it, the fact that you had a lot of freedom and flexibility is a blessing. And maybe at the time it seemed like a little bit of a curse because your goal or maybe ambition was to have a full-time job, a more traditional job, right? A nine to five job. And you can’t connect the dots looking forward. You can only connect them looking backwards and seeing how you got to where you are.
And you’ve been very prolific in your work, call it your day job. And I’d like to talk in a few minutes about your books. But before we do that, I wanna go back and talk about your own personal experience with SMA. And SMA is not one thing, it’s a whole range of different conditions. And my recollection was that when you were born in the early sixties, if there were 4,000 births at that time, you might have been one of 700 individuals born with SMA, many of which died at a very early age, and many of which would not go on to lead full and productive lives like you’ve experienced.
So we know more about SMA today than we did the better part of five or six decades ago. And at the time I give your mom a lot of credit for this, at least not knowing your mom but having read your books and the close relationship that you shared with your mom, she was the one I recall that said, you need to look out for yourself. Don’t wait for a handout. You’re not the same as other handicapped kids. Those were the messages I know that your mom shared with you and that helped you early on in life maybe look at your situation, not looking for sympathy or pity, right? But just to say, hey, you need to take control of your own destiny. And I think that had to set you up for some of the success that you’ve experienced. But I don’t want to candy coat that and say that it wasn’t without some obstacles or some difficulty. And at the risk of focusing on the negative, you’ve been through a lot from a very early age and you’re not just relying on what your parents or family members told you, right? Because you have a very strong memory of these experiences starting at a relatively young age. And I’m wondering if you can recall some of the challenges that you encountered as a youth?
Ben Mattlin: Certainly I should say I don’t recall it personally, just being able to go to school when the prevailing thing was to either not educate kids like me or stick them in a separate institution somewhere. I do remember once, I think it was to secure some kind of funding from the city of New York. I had to spend one day in elementary school for other disabled kids, and I was very unhappy. I felt very alienated, partly because I didn’t think of myself… I wasn’t one of them. I was somehow different.
But then going to a regular school, there were issues of integrating into the system. I know my first grade teacher, and I’m still in touch with her online, kinda reminded me of some stuff. I’d forgotten the efforts she made to help the other kids be comfortable with me. I guess I made efforts too. I made jokes
For some reason I was in the hallway at school at the top of a flight of steps. School was not very accessible and this kid with nobody else around threatened to push me down the steps. And as I joked before, I had heroes like Captain Kirk and oh, and, Chief Iron Side, the grumpy detective in a wheelchair. I was not gonna show him I was afraid. And I just said, no, you’re not gonna push me down the stairs. And he was like, I could. How do you know? I said it’d be stupid. You’d get in so much trouble. And he walked away and I was okay. And I don’t remember, a friend came along and I went to my next class. So there were times of bullying, but I don’t remember a lot of that.
David Hirsch: So I’m thinking about the turning points in your life. And I identified three or four of them. And I don’t know if you would agree that they’re turning points, but when you got a motorized wheelchair, that was a big deal. I would say the biggest turning point in your life is meeting ML, who was a nanny to your younger half brother Jeff, who became your wife and life partner. You’ve been given the opportunity to write, which is something that you really have a talent for. And then, I don’t know if you see it this way, but the fact that you’ve been able to be a dad, and be parents to your two lovely daughters is a huge thing.
Ben Mattlin: Sure.
David Hirsch: Maybe it doesn’t seem like such a big deal. It’s just my life. I’m fairly confident that most parents today, if they get a diagnosis with a child with SMA, they probably think it’s a death sentence. And you’re living proof that, no guarantee that their child’s life would turn out like yours, but you’ve accomplished so many milestones in your life, and I think you’re living testimony to the fact that parents need to err on the side of believing in their kids like your mom did. And so many other people have believed in you. And I’m wondering if one of those turning points is one that you consider to be a bigger highlight than the others?
Ben Mattlin: Look, certainly moving away from home to go to college was a big deal. I was cocky. I thought, ah, no problem. I can do it. But I had no idea how and that was very difficult having to rely on full-time paid help. And there was quite some drama there. Some vulnerability, some risks, some abuse, some danger. That was not easy. Managing a romantic relationship, I’m sure there were times ML and I felt, forget it! Let’s go our separate ways. But we didn’t. We worked things out. We have said often that in a way it’s because of my disability. Because I couldn’t walk out the door and if she walked out the door, she knew I would be stuck, that we were forced to work things out. It wasn’t so easy. And I thought about it. If I were her parent, I might say, what are you crazy? What are you with a guy like that for? Don’t you know better? And I think sometimes I’ve even thought that. I’ve thought she shouldn’t be with me. We get that way, insecure.
That’s why I wrote my second book, to talk to other couples like us and learn, hey, there are a lot of us out there. I don’t need to be overly afraid or overly grateful, or any of that stuff. We’re a relationship like any other. Having kids, how are we gonna do it? Not a lot of people like me have kids, but then I found out about an organization called, I think it was called, “Through the Looking Glass” for parents with disabilities. Oh, there are people like us out there. So I think the biggest, the best answer if we have doubts about living with a disability is finding other folks who have done it before. And the community is its own best resource and [chuckles] we really do inspire each other. We hate to use the word inspirational, but we inspire each other.
David Hirsch: Yeah. It is amazing and I just want to thank you for being a role model. Not that that’s what you set out to do. Again, you can look backwards and say, yeah, I guess other people do look up to me, and you just have to accept that as a genuine compliment and just recognize that. At least in investment parlance because we both have investment experience, that I think of those as the special dividends that you receive in life, right? Not the quarterly dividend that you might expect but something that is received unexpectedly. And just be grateful for those situations.
Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in just a few moments. But first, this quick message. Please help 21st Century Dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents Survey. A link to the survey can be found in the show notes. As a token of our appreciation, each person, mom or dad, who completes the survey, will receive a Great Dad Coin. Thank you. Now back to the conversation.
David Hirsch: So Ben, you’ve been a prolific author and I’d like to talk about each of your books. And the very first of your books that came out in 2012 is entitled Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity. So I’m curious to know where did the title come from?
Ben Mattlin: After I got married, my wife and I went back east. There was a family gathering. They hadn’t been at the wedding and I think we brought our wedding album or something. And I remember Aunt Sarah, who was, I don’t know, in her nineties at that point, looked at me and said, oh, you were your mother’s Miracle Baby.
David Hirsch: [laughing]
Ben Mattlin: And I thought, thanks, but boy is that loaded. What a responsibility! To be a miracle. To be living on borrowed time as it were. So I thought, why not play on the idea of the miracle boy who grew up? It’s so typical, or it was, for any disabled person who had accomplished something to be called inspirational, exceptional. And I thought, no, it’s not about me. I realized I had accomplished many of the things I had done in life, partly because of me, but my family and I owe a lot to other people, including disability rights activists. So I kinda told the parallel stories of my coming of age and my understanding of the development of the disability rights movement, learning about the movement helped me figure out my life.
David Hirsch: I thought one of the more poignant stories that you told or recounted was being the MDA poster child as a youth, and I’m wondering if you can share that story with our listening audience.
Ben Mattlin: Yes. For my parents, having this disabled kid in the early 1960s, there weren’t a lot of resources. But there was the MDA, the Muscular Dystrophy Association. And they were big supporters. The organization’s headquarters in those days was in New York and we were in New York and somehow I was tapped to be a poster child. There was a full page magazine ad in which I was made to stand in leg braces, which had been part of my therapy, a part I never liked. Stand in leg braces and look up at the camera. My big blue eyes under my blonde curls. And the caption, I was told the caption would be, “If I grow up, I want to be a fireman.” And I was upset when I heard that was the plan because I didn’t want to be a fireman.
David Hirsch: [laughing]
Ben Mattlin: I knew it was impossible. I also, at that point, was told that my prognosis, my life expectancy was normal. So I thought “if I grow up” was really… I was what, seven years old? I thought I was telling a lie. Two lies really. I didn’t want to be a fireman, and I was gonna grow up! So you can’t see it in the picture, but I crossed my fingers behind my back and I told my mother afterward, I don’t want to do this anymore.
David Hirsch: Yeah, very powerful story and such a young age to have that level of enlightenment. And thank you for recalling that story cuz the MDA has done a lot of good things for people with handicaps and disability. But you wonder now with that insight that you just shared, how much of that was manufactured to tell a certain story even if it wasn’t an accurate one? And I think that’s what I heard you saying.
Ben Mattlin: Mm-hmm.
David Hirsch: Let’s jump to the second book in the series, if I can call it that, the title of which is In Sickness and in Health, which came out in 2017. And the book is about interabled relationships like the one that you and ML share. And I’m wondering what was the impetus for writing this book?
Ben Mattlin: After the first book, a number of readers got in touch and said, tell us more about your marriage. Marriage is hard. The more I thought about it, I realized I have a lot of insecurities, like, why are we together? What has made this work for 30 odd years? And I interwove my relationship story with other couples like us.
Part of my message was, we’re just like anybody else, any other marriage. You have differences and issues and you work them out, or you don’t and the marriage fails. But I also felt that there are perhaps elements of marriages like mine and there can be advantages. We’ve been through things that maybe other couples don’t have to face until they’re much older, until something happens and it can bring a degree of intimacy that I think non-disabled folks might envy.
David Hirsch: Okay. The third book, the most recent book that came out in 2022, is entitled Disability Pride: Dispatches from a Post ADA World. I’m wondering what has been the reaction to this book?
Ben Mattlin: Yeah, my third book, Disability Pride, is not about me. I began noticing… Let’s see. There was a woman with a disability on the giant billboard in Times Square, advertising Olay beauty products. There was a catalog of lingerie featuring models on crutches and with colostomy pouches. And you’re missing an arm or a leg. On social media people were posting selfies, people with prosthetic limbs or all manner of disabilities. And I thought, wow, something is happening. Something has changed. I had been involved a little bit in disability rights who got the ADA passed in 1990. 30 years had gone by and mostly younger disabled folks were exercising those civil rights protections that my generation and really the one before me had fought for. But they were doing it in ways I had never imagined. It wasn’t just about getting on public transportation or even getting jobs. This was about cosmetics and the beauty industry. A woman in a wheelchair won the Tony for Oklahoma! that had never been played by a disabled person before. Not just playing someone’s grandmother but the town flirt basically. The girl that can’t say no. And I thought, something has happened. Something has changed and I don’t understand it. I have lost touch with the disability community. So I set out to interview as many folks, mostly people in their forties say, who had come of age after the ADA passed, to get a sense of what issues were still on their minds and how had they come to feel so comfortable with their disabilities or chronic health conditions that they weren’t minimizing them or hiding them anymore, but they were out there saying, look at me! I’m beautiful as I am! Hence the title, Disability Pride. Everyone I talked to had a story of how they had come to feel okay with themselves as they were, and it was wonderful for me to gain a new appreciation of A) the diversity of the disability community and B) the fact that younger, disabled folks had not grown complacent after the ADA as I had feared. They were doing all kinds of things. And it made me feel disability pride to be part of this amazing community.
David Hirsch: Yeah. Thank you for having the vision and putting pen to paper or fingertips to keyboard, if you will, and drawing attention to this important subject because a lot has transpired since 1990 when the ADA was passed and the impact that it’s had, we’re talking primarily here in the US, but around the world.
Ben Mattlin: Yes.
David Hirsch: As I’ve had a chance to travel and meet people in different countries, different continents around the world, the disability world looks a lot different outside the US.
Ben Mattlin: Yes.
David Hirsch: And in fact, in many cases, some countries are pre-ADA. They don’t have any laws that protect people with disability. And we just take it for granted today. That’s just the way it is. But it hasn’t always been that way. So I think you drawing attention to this has been really important. So anyway, those are the three books. Thank you for sharing some insights or thoughts.
And I’m curious to know under the banner of advice, what advice you can share with parents, perhaps specifically with dads raising a child with disability? That’s not in your experience. You have two typical girls. What advice would you have as that person who grew up with a disability to the parents of a child with a disability?
Ben Mattlin: My parents… It was a combination. My mother used to say, I think it always made me a bit uncomfortable. She said the saddest day of her life was when she learned I had a disability. She was aware of some of the problems I would have. My dad, I think, was a little less realistic, but he’s always searched for answers. He’s the one who dragged me to faith healers and gurus and people who were gonna cure me. Maybe a combination or something in the middle is what would’ve been best for me.
Look, I’ve met a lot of other folks who’ve grown up with disabilities whose parents basically said you’re never going anywhere. You’re never gonna be able to do anything. You’re never gunna move out of the house or have a life. Just face it. And that can become a self-fulfilling prophecy. Very dispiriting. So I think it was good that I had the message that I could do anything and be anything I wanted when I grew up, however false I will admit.
I think it’s good to encourage, but I also find that parents of disabled kids today do have resources. They have a network that communicates. Some of them really impressed me. They’ve learned about disability rights. They fight for their kids cuz they know what they’re entitled to. And I hope they learn, and I say this about newly disabled people too, not to stigmatize it, not to be ashamed. Be realistic. There are a lot of adjustments that have to be made, but don’t let it be a source of shame. It’s not a sign of failure. As I said before, when you learn about the disability community, what it’s always done, how disabled folks have always contributed to the world, that society and culture. You can’t help but feel proud. You can’t be ashamed. It does help to join the disability community in some fashion. I know a lot of folks are not made for advocacy and anger. I get that. But I hope people don’t harp too much if they can help it on medical solutions too. There are social and political aspects to the disability experience that are very important and have a profound effect on the lives of disabled folks.
David Hirsch: Yeah. Thanks for sharing, Ben. And just to summarize some of the highlights of what you just shared, don’t set limits on what your child is capable of. No one really knows, God only knows. Don’t stigmatize. Don’t be ashamed. And lean in to engage as a family and engage in the broader community.
I remember when I was really little, I wanted to be a professional baseball player. And nobody told me that I wasn’t gonna be a baseball player. They didn’t say, oh, you’re going to be a baseball player. But we all have dreams and aspirations as young people of things that we may envision doing. And I think we each have to come to the realization at a certain point in our lives that maybe our goals or dreams have changed, or that we have limitations ourselves. And I’ve tried to err as a parent myself by not saying, I think you can do this or think you can do that, but just be encouraging. Try to be the parent that encourages people to try things.
Ben Mattlin: Mm-hmmm.
David Hirsch: And “if you don’t try, you’ll never know” mentality. And I think that’s just a value that I’ve tried to embrace is to err on the side of engaging and making an effort to try things, even if you’re not confident that you’re able to do something. Because if you don’t try, you’ll never know. So anyway, thank you for sharing. I’m wondering if there’s anything else you’d like to say before we wrap up.
Ben Mattlin: I think it’s important to listen to your kids, disabled or not for that matter. But disabled people I think know all too well the experience of even as adults being treated like children, not being treated as competent to manage their own lives. And there’s a risk, there’s a risk involved sometimes, in doing your own thing or going your own way or being left alone. But I think it’s a risk that people need to feel good about themselves. But I’m obviously not advocating recklessness, but a little bit of a risk taking can be a good thing too. It depends. I probably shouldn’t generalize. But I appreciate your having me and asking me these questions because yeah how else are people gonna know if we don’t talk about things and ask questions and I’m pretty open and available. My website has a email address for me and I do try to respond to people if I can. Good to keep the conversation going.
David Hirsch: So if somebody wants to learn more about your work or to contact you, what’s the best way to do that, Ben?
Ben Mattlin: I’ll probably go to my website, BenMattlin.com. There is an email link there and links to a lot of my work. Not all of it, but a lot of it.
David Hirsch: Okay. I’ll be sure to include that in the show notes so it’ll make it as easy as possible for somebody to follow up with you.
Ben Mattlin: Great.
David Hirsch: We’ll also put information about each of the books in the show notes as well. Ben, thank you for your time and many insights. As a reminder, Ben is just one of the dads who’s part of the Special Fathers Network, a mentoring program for fathers raising children with a disability. If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation to your own, please go to 21stCenturyDads.org.
Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads Foundation is a 501c3 not-for-profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax-deductible contribution? I would really appreciate your support. Ben, thanks again.
Ben Mattlin: Thank you.
Tom Couch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21stCenturyDads.org.
David Hirsch: And if you’re a dad looking for help or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to Facebook.com, groups, and search “dad to dad.” Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to David@21stCenturyDads.org.
Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch.
Thanks again to Horizon Therapeutics who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at HorizonTherapeutics.com.