Born Fabulous
Born Fabulous
Season 3, Episode 13, Part 5: Janice Fialka & Richard Feldman, "The Best People In the World"
Janice Fialka and Richard Feldman continue their discussion about the sibling perspective, sharing a very poignant quote by their daughter Emma. They also talk about fighting and loving hard, share many resources, give some advice, and sprinkle in more sweet stories. Their wisdom, advice, and experiences have golden nuggets for parents of younger children as well as adults with disabilities, and of course community allies.
Though they both say they are retired, Janice and Richard continue to be sought after presenters and public speakers on issues relating to disability, inclusion, building community, advocacy, and more. Janice is also the author of four books, and a poet.
Richard and Janice and the proud parents of Micah Fialka-Feldman, one of the stars of the acclaimed film, "Intelligent Lives". Micah has an intellectual disability.
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Hello, my name is Greta Harrison. Welcome to born fabulous podcast season three, Episode 13. The theme of this season is young adults with intellectual disabilities living full lives of independence and interdependence. You will hear interviews with parents support staff and of course the young adults with intellectual disabilities. Please note these interviews were done one to two years ago. achieving independence is a complex journey for many individuals and families. There were many stops and starts with various entities when putting together season three. Regardless, this content is very relevant and we hope you will find it helpful. This episode is the last of five parts with Janice V. Alka and Richard Feldman. Though they both say they are retired, Janice and Richard continue to be sought after presenters and speakers on issues relating to disability, inclusion, building community, advocacy and more. Janice is also the author of four books and a poet. Richard and Janice are the proud parents of mica Fialkov Feldman, one of the stars of the film intelligent lives. Micah has an intellectual disability. It was a real treat to have this in depth discussion with both Janice and rich. Now please enjoy this short clip of love as a potion. The lyrics are by Melissa regio, a young lady who had Down syndrome and was the focus of episodes one through four and season one. The music and voice are by Rachel fuller
Unknown:inside. Show
Janice Fialka:the phrase that I use maybe I already have with you Greta is that it's and I learned this from another parent is not about letting go. It's learning how to hold on differently. Because none of us ever really totally let go. Right? I mean, yeah, you know, I just have to share with you Thank you Rich for the for those thoughts, because it gets me to an end. But I picked up the sibling slam book, which you now still can get on, you know, through through whatever, by Don Meyer. But there's an article when my Alma spoke at a conference and this was in she was in high school. And I just want to read a couple of the lines. This is Emma mica taught me to accept people for who they are, instead of what they can or can't do. I've learned to ask others for help. I haven't I have not read this in years. So Emma's saying I've asked everyone to ask others for help. We tend to see it as a weakness. But asking really builds community. If I can model that, then siblings will learn that from me. This is so interesting is Yeah, so So there she is, you know, sharing that as well. So
Greta Harrison:that's beautiful. And I'm glad you I'm glad you read that because I don't want listeners to think that oh, she doesn't love her brother. She loves her brother very much. And they have a very close relationship. You were just being honest about sibling feelings that happen when people are growing up. Yeah, I'm really glad glad you did that, then. It's an honest, that's honest, honest,
Janice Fialka:they have so much fun together. And now at this age, you know, we're the ones they tease. So they get together and go, you know, they make jokes about their weird parents. So absolutely. And they present together too. So thank you for lifting that up as well. Yes,
Greta Harrison:they do. And for the listeners who don't know, Mike has presented at Harvard. Correct? Harvard or
Janice Fialka:something? Yeah. Brown University. And I think he didn't present you know, it's, it's hard to track all of that.
Greta Harrison:I wish all the educators in the past could know all the things that he's done. That's, that's amazing. Now, what about we've talked about the rewards, and let's talk about some of the pitfalls. You've talked a few times about worrying in the middle of the night, which I think every parent can really relate to. So just touch on that briefly. We don't want it to be a big downer, but what are some of the pitfalls
Richard Feldman:that can't be irreverent about it and laugh once in a while. So thanks for that opportunity. It's easy to say that it's all uncertain the future but not being able to make it better is always in your belly. because you can't, and you know it. So we're always convincing ourselves, we know it. It hurts. It's painful, it's scary. You want, you know, parents want things to be smooth, you want to be able to hug and say it's all bite, right? It doesn't the world doesn't work that way. And nobody works that way. So, you know, as specific, the pain that he has to go through finding a roommate, every year, the pain, the when he doesn't have anything to do on a Saturday night, the pain when we're getting 10 or 10 Texting messages in an hour of how are you I'm Adam, you know, and he's always having an amazing day. And but he'll have some, you know, so you know, in terms of his voice, but so it's, I think it's what all parents go through in many ways. It's all parents want their kids to be fulfilled, happy. And you want it all the time. But you also know, that's not how the world is. And it never is, it never will be. And, and that's why you need a circle, you need a companion, I mean, a friend, a lover, a wife, a spouse, the husband, you know, cousin, or you need people to vent, you know, to share, it's just,
Janice Fialka:yeah, you set it well to fall apart, you know, to moments of despair of care. We can't stay stuck there. But, you know, most of us, or at least many of us experience that it's real, you know? Yeah,
Greta Harrison:I think it's powerful for people to know that a couple like you who've been really helping so many families over a long period of time, that you still have the same concerns that almost every parent has. So thank you for being honest. Just
Richard Feldman:to add to that, I mean, also the amount of times we fight with each other. And we argue, and we don't do it so nicely, sometimes, right? I mean, you know, but But you mentioned the word love, I mean, a few times and the difference between loving your spouse and liking them all the time we're agreeing on how to deal with young adults with disabilities is a challenge. You know, so
Janice Fialka:at our 40th anniversary gathering, which was still during COVID, we had outside with drumming, and, you know, everybody was distanced. And mme, I gave a little talk, I think, was it COVID? It doesn't really matter anyway, it would be for COVID. That's right. And Ella gave a little talk, you know, and Micah did as well. But Emma said, you know, one thing I learned from my parents is that they can fight hard and love hard. And at first, you know, I went, you know, but so many people came up and thanked me because, you know, we're sort of shy as a culture about, you know, the, the challenging ways of being and so, you know, we've had our ups and downs and various points, we've gone into therapy to sort of have another person there to figure out help us negotiate all of that tension as well. So I appreciate your you're asking that question, because it doesn't pay to not be honest.
Greta Harrison:And I love that you fight hard and love hard, because it's that second part that that makes it keep going, isn't it? Yes. I love that. Now, beyond your books, your movie, the movie is intelligent lives. And there's another film out there through the same door, and poems. Are there any specific resources that you want to steer parents and self advocates to that help foster their future interdependence and independence? Well,
Janice Fialka:what probably for us, I mean, there's so many now. Oh, my goodness. One of the probably key communities has been, you know, people go to the website, inclusion.com, Jack pairpoint Marcia forest, Linda Khan. Every year up through up until COVID, there was the Toronto summer institute that brought people from around the world together, where we learned about circle of friends maps, we learned how you chat, you know, overall, you cannot rely on the systems where you don't talk. I mean, you know, we still withdraw from them, but it's not the systems this that I'm the agencies that are going to be able to do it all and that's a hard lesson. So anyways, I think now the tour of the title is Marcia forest. Inclusion Institute. I don't remember the exact let inclusion.com definitely is one of them. Oh, there's so many people. I think one of the books that have been really important to our family was Andrew Solomon's book, far from the tree, which he interviewed families that had children with disabilities all at all kinds of differences. Yeah, I mean, you know, I could turn my head to, you know, these these books here as well. Well, I
Richard Feldman:was just gonna say, I think it's, there's so many books now because of the disability justice movement that's emerged that are the young activists that are involved in all the social movements now. And, and and again, it's it's individual advocacy is one framing, seeing it as a social question for transforming society is seeing the relationship between our our understanding as parents, that it's not just creating a safe way for young people to grow. But how does the world change? So there are so many books, I mean, any parent that has never read no pity, which is the history of the disability movement in the United States, you know, was written gobs a years ago, you know, is missing an under an opportunity. You know, there's, I can't think of all the books there's a book by Naomi Ortiz, self care, self care, and there's, we can provide them and there's there's podcasts and, and advocacy groups that parents need to take a little peek into as they're going through. And it's different for all parents at different stages of their child's or young person's thinking and growth. Right.
Greta Harrison:I will have a page for you all and Micah, okay, in the season three, part of the podcasts on boring, fabulous podcast.com. And so on that page, I will have a list that you all can send me of resources, but I'm glad that you discussed some of them. And I just want to make a pivot here because it reminds me, the first mentor I had was Stephen Lor regio. He's the former CEO of Barnes and Noble, and their daughter, their daughter, Melissa, and when their daughter Melissa was born in 1988, there were not any books write about people with disabilities, it is because of Melissa's birth. And his aha moment that he started making sure. And for all those who don't know, pre pre Amazon, you know, we relied on bookstores, real bookstores, and he made sure that they had lots 1000s and 1000s of titles, they had to do disability. So fast forward from that. And for those who want to know my conversation with Steve of orange juice, and Season One, they started out in season one, because you remind me of that there's so many resources out there now there weren't then, but there are now there's
Janice Fialka:I do want to list up one book for for listeners to LS Huang, w o n g. And I don't have the title right in front of me, it's downstairs, but it's about it's stories of people with disabilities. So when we are ready as family members, we need to read those stories because they really are our teachers. And she did a beautiful job of collecting stories. And actually, there's a wonderful new children's book we've already Burgess 20 copies, called we move together beautiful illustrations of every kind of person in the whole world. And they also the authors are from Toronto, and they also have it available for people who are hearing impaired or visually impaired as well. So on and on, but wanted to lift up those and forgive us for those that have influenced us that we did lift out, but we'll have it on the hardcopy yep,
Greta Harrison:that's great. Well, thank you. I appreciate that. Now, what advice would you have for parents coming up behind you? I know you could probably do a whole weekend of advice, but
Janice Fialka:Well, I think we've woven so much of sort of our principles, you know, as well. I mean, I have a quote right here attached to my computer that says To hell with bootstraps, for surely we need to swoop in on most days and save each other. So you know, knowing that, yeah, as we've said, over and over, we're not alone. I do think humor is really important. Being able to laugh, be silly, make inside family jokes that maybe you never would share with anybody else. But they work for you know, for your family or they work for our family. Great Expectations. and not to necessarily accept what people tell you is the right way as in school settings, but to x it rather than accept ACC PT, expect more. You know, those are a few that highlight in addition to everything we've talked about in your wonderful listening.
Greta Harrison:And Rich, I can see your wheels.
Richard Feldman:There's a Native American conversation that starts with, respect us or expect us and they expecting means that we're going to be at your doorsteps knocking down the walls for change. And and I guess the only advice is to find the support where you can ask the questions you need to ask, I don't know, I really don't I mean, I think we've shared
Janice Fialka:you're in it for the long run, you know, we're, we're, we're in our 70s. Okay. And Micah is in his late 30s, mid 30s. I mean, this is a long road. And so you, you gotta take care of yourself in community with others, and really have have fun times with the family, you know, everything that I'd be falling apart, but maybe you go trampoline, you know, or you go for a hike or a swim or you go eat ice cream, you know, cherish those little moments, because those are the things that get you to the next place. Because life can be so heavy. And it is heavy. And it's also got to be filled with dancer ice cream, or noodles, or whatever it might be that brings you that joy and that togetherness. Easy to say, but it's true. I think it's definitely
Richard Feldman:true ice cream is the best, there's no question. I think two things in terms of advice. One is we make this journey by walking and rolling. And there is no destination, except what we create. And it just got to be filled with the belief that human beings can be much more than we are. And that our children and our family members can change in this process. Even with all the disappointments we'll face and all the obstacles that human beings can be weighing and seeing what's possible yet, but each of your parents who are watching this, and professionals, if they have that kind of respect for the people they're working with, and they're relating to and then their own families will make well into the worlds a little little more forward. And I
Greta Harrison:hope that there are a lot of community members listening to because that's how inclusion really happens when we get out of our bubbles. And it's everybody who's involved. So I'm, I'm praying for that, like thank you for that. Thank you so much. Is there any your last opportunity, anything else you want to say?
Richard Feldman:Thank you for having the courage to keep on doing this. This is however many people watch it, they're gonna learn a whole lot from the obviously just this interview, but all the other work you do and your own story, and so much that you've contributed. So thank you so, so much, you
Janice Fialka:know, mica absolutely grayed out, we have enormous respect for your pioneering work, your commitment to this. I remember years ago, Miko was asked, So mica, do you wish you didn't have a disability? And, you know, he was around people who had disability pride. And he learned about that. And he looked at the person said, No, I mean, I get to meet the best people in the world. And I think there's something to that, that when we find our tribe, and we learn with them, and reach out to others, you know, we're with whatever that means the best people and ultimately, we all are. So
Greta Harrison:I love that. And that makes me share a story about Micah. Because when I was interviewing the self advocates in season two, there was a difference in the language they wanted to use. Kayla wanted to use the language differently abled, which I respected. And we used that. So then when I talked to Micah and Tory, I mentioned that and I said, Would you like to do that? And Micah said, Let me think about it. And he came back right away and said, Now, I learned a long time ago to be proud of my disability. And I learned to go ahead and say that and so I respected that too, both opinions are valid. You know, I'm not gonna knock either one. But I just love that Kayla and Micah both stood up for what they believed, you know, and they both said how they wanted to have this addressed, but I just wanted to mention, you know, you've raised such a strong, young man there, and he's a great young man, as well and
Janice Fialka:what a beautiful I mean, your your gift, is your ability to frame it that way and to even have respect out to ask that question of each person grayed out. So we live that up and you as well. Well,
Greta Harrison:thank you. It's been a pleasure talking to you. I admire you both so much. I thank you for being such changemakers in the world and I know you're gonna keep on keeping on and we will definitely be staying in touch. Thank you
Unknown:very much.
Greta Harrison:Thank you for listening to Episode 13 of born fabulous podcast's third season. I hope you enjoyed it and want to hear more. Some short video clips from most episodes are available on our YouTube channel and on born fabulous podcast.com. In Episode 14, you will meet Janice and Rich's son Micah Fialka Feldman. Micah is one of the stars of the acclaimed film intelligent lives. He is also a teaching assistant at Syracuse University, a sought after keynote speaker and soon to be author. His book opening doors is scheduled to launch in late summer 2024 by inclusion press, please follow and like us on Facebook, Instagram and Twitter. If you enjoyed this episode, I'd be honored if you would leave a review wherever you've heard this podcast. Now please enjoy this clip of love as a potion. The lyrics are by Melissa regio, a young lady who had Down syndrome and was the focus of episodes one through four and season one. The music and voice are by Rachel fuller