Born Fabulous
Born Fabulous
Season 3, Episode 12, Part 4: Janice Fialka & Richard Feldman, "I Gave a Teacher Hope Today!"
Janice Fialka and Richard Feldman discuss Micah's ability to reach out to others, generational sense of security, giving a teacher hope, interdependence, how this journey has made lifelong profound personal changes, a sibling's perspective, and much more. Every one of Janice and Rich's episodes are impactful, but this one has even more profound moments. Their wisdom, advice, and stories 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 are 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 12. 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 fourth of five parts with Janice Falcon and Richard Feldman. Though they both say they are retired, Janice and Richard continued 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. Please enjoy this short clip of love as a potion. The lyrics are by Melissa Reggio, 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. Now I've one thing I've noticed about mica and I feel like I've had the pleasure of getting to know him. Actually, since 2019. And he is not he does not hold back when it comes to reaching out to others. He's He's good at making connections. He's good at making friends. He's good at letting everybody know he's looking for love all of those things. And I just wondered, as a parent to parent, is there anything that you can think of in his past, when he grew up that helped him? Or was he just naturally like that? Or did he get more at ease as he got older and grew into his skin? Because he's really good at that.
Janice Fialka:He is. You know, I think there was some intention, we stumbled on that concept of learning to reach out to others, it's sort of what we were talking about earlier is that really from other people with disabilities, who have mentored us who are older, primarily people with disabilities, sometimes the family members who are stressed that interdependence is the, the dream, the goal, and that require it as opposed to independence, because most of us, we're not independent, you know, we need each other, we can do things, you know, with some self empowerment, and yet that is always done in in relationship to others. So I think it was practice. And I tell you almost hide, oh, no, so embarrassed to share this. But almost out of desperation, when Michael was younger, we reached out to people, you know, when he didn't get invited to birthday parties, we didn't do this all the time. But there were a few times with people that we sort of knew that. Okay, if you're not good if mica can't get invited to the party, then how about if we take your daughter and Micah and they go out for a special birthday ice cream cone or something? So or we would I remember talking to Michael, when it was prom time, and he had to get his his, you know, tuxedo? And so I reached out to another mother who had, you know, been friendly towards our family. And I said, How about Micah and your son go and look for their tuxedos together. And she said, That's a great idea, of course. And so we've learned over and over that his life is incredibly rich in part because of that. And then, unbeknownst to us, Michael was watching us do that as well and became more confident. So I think that the intentionality reaching out I think the other thing is that I think we really on our good days valued what he could do. And although we had high expectations, we also acknowledged Hey, Micah, that's so cool of you. I don't know I can't come up with an idea. But or an example but you you tried, as opposed to well, here's an example Mike, it doesn't And he's comfortable for us sharing this, he does not read or write, which always surprises people, because he uses technology so well. So in the beginning, when he couldn't write out his papers, we came up with the idea of having him interview people on a topic, audio, tape it and then submit it to as his paper or assignment fulfillment of his assignment. And so the focus was, what on what can you do? And how do we lift that up, as opposed to can't do that you're not good enough? You know, that kind of thing? So it's a dance? Yeah,
Richard Feldman:I think I think it's a it's a fascinating question. And I think, you know, why is mica the way he is, in terms of feeling comfortable reaching out is both something deep within him that he's seen, that is also who he is, you know, if he was around parents that knew how to repair cars, he probably could repair a car, right? I mean, our kids learn from their parents, whatever, you know, and for us, we're very social and very activist. And it's, you know, these are the things that, you know, come off of us. But I think it's also the intentionality. I think what Janice said, which is really the most important part is, we knew that, Mike, we have a different sense of security than a lot of parents, and particularly the generation before us, the generation before us believed that they could save enough money to take care of their kid and make them safe for the future. And that security is wrapping our arms around the kids, or young adults, or a family member with a disability. And then it was up to us as individual nuclear families as individual based on the individualism of American culture, to hug and hold security that way. We believed from the very getgo that security is based on the relationships you have with other human beings, and the building of community. So when Janice reached out to Michael's mother about going to rent a tuxedo, whether it's consciously thinking about it or not, it's in our blood to say, this is how we create community. And this is how they change, not just how Mikey gets tuxedo, but they will change because they will have this interaction. And to this day, that family is one of the most, they don't even live near us. But will there's a relationship with mica, and there's the sun. And those stories have gone on. So it's about community, it's about interdependence. And and it's, it's, it's how did the community change? Because if it's not on your radar, you don't think about it. I mean, I didn't think about disability stuff until Mike really became was disabled, and was entered introduces to a whole new world. Having
Janice Fialka:said all that, it's still hard. And I think that's so important. It's not like, oh, we have a problem. Let's ask people, you know, there still is that sense of cautiousness? So I think there's phases to our being able to reach out, you know, first we know that there's something going on, then we sort of realize we need some support, and then we don't do anything and then we do something. So I don't want to, you know, glamorize what we've done. It's hard at times, yes, it's in our blood. But it also is, it's it's hard, you know, when Mike needed open heart surgery, like I said to the mom, you're gonna need a circle of support. Oh, I don't know, my God. And you know, it was an eye, you know, with his nudging. I did. I brought together eight women friends, and we had a conversation and we talked about courage and all that, and they were very, very helpful. So I wanted to mention that as well. I love that he
Greta Harrison:said that to you. And it was true. And it's true. And and while they're in school, especially when you're trying to make sure they have is as inclusive and education as possible. I think parents need circles of support then to I mean, the students need them but the parents need them to Yes, gotta be around people who get it. Yes, absolutely. You gotta have your you gotta have your yards and they don't always have to be is they can be whatever gender but you've got to have that circle who gets it? Yeah, I'm glad you brought that up. Yeah. And his heart. His heart scare was quite something. But again, that's something else mica does well as he keeps track of his health now, you know, I'm saying we're talking about him. But we're going to be talking to Michael directly. I don't want you to think we're not going to we are going to talk to Micah directly, but he's very conscious of his health and he's good about exercising and eating right and that's That's great. So let's move on to independence into independence. What are some of the biggest rewards you have from this whole experience? Hmm, great
Janice Fialka:question. I think when I mean, to be fulfilled, the sense of being able to contribute to society or to a friendship or to relationship is at least an aspect to living a quantum quality life. So when I remember once mica said, a teacher came up to him after hearing him speak, and she taught in early childhood. And she said, Micah, after hearing your story, I realized that I have to go back and tell the families that I'm working with and the kids were like, you know, third, third grade, maybe second grade, and I have to go back and tell the talk to the families in a different way. I've been sort of limiting what I thought was possible for their kids, and you've opened up that door for me, you give me hope. So my God calls me up, because it's up and says, Mom, you know what, I gave a teacher hope today. So knowing that he can contribute something, every single person can, you know, whatever it might be, even one of my close friends who didn't speak, was pretty much unable to move at all the limits, people would see Scott as a camp kid, what could he do, but his peers in high school would come visit Scott, and be with him and get what they called a Scott moment, which was to settle their nerves, and to be still and to you sort of meditate. So each person has gifts is folks have taught us from the Toronto Jack pairpoint Marcia forest, Linda calm, everybody has a gift. And so, you know, a long way to say I think being able to contribute to have your gifts acknowledged, that has given us great joy. Rich, what about you, many?
Richard Feldman:I think how it's changed, I'm thinking about how it's changed us. And it's joy is an interesting word. But in many ways, we'll never see the world or people in the way that we saw them before. And part of our humanity and are growing as human beings, is, you know, when people use the word inclusion, it sounds like you're just opening a door and throwing them in the house and everybody's together or something. But But inclusion really means you have the deepest respect for every human beings ability to reach their potential, whatever that is. And that means shedding the glasses of what success is shedding the glasses of what normal is shedding the glasses of, of ableism of racism, gender of sexism, all that stuff, right? I mean, you know, so we see when we see people outside we have a better chance a better tendency to to be open and listen rather than judge and so you know, so Mike his gift is not only been this this amazing journey, but it's it's a journey that has transformed us as parents and me as a dad and and he's a teacher. And to know that you your teachers are not these professors that write papers, but the teacher is the person who's walking in the street or rolling in, in their chair is a pretty amazing gift.
Janice Fialka:And you know, as I'm listening I'm also really aware that we need a whole segment on Emma our daughter, because so much of who Micah is, and actually who Emma has been who Mike is, has been the role if you will, the relationship with his his younger sister Emma by four years. So there's a lot of joy in watching how they have evolved over time she now was for eight years she was a teacher in Boston was second graders doing full inclusion. Many of you saw her if you watch the film intelligent lives, and now she's a principal in an element for an elementary school in Boston as well. So the joy of seeing how she is challenged does I mean, siblings are really important to helping us be better at knowing how to be with Micah. So I really want to lift up all that she has taught us and the joys, the immense joys that she's given us. I do have a specific story that came to mind. You know, when Mike had challenged the university here in Michigan, because they wouldn't allow him to move into the dorm. He tried all different ways to get them to change their minds. And eventually he ended up suing the university. That's a very long story, which you can read a bit about in our book. He, the judge who ruled in favor, Judge Dugan, who ruled in favor of mica is incredibly critical, critically important to his life and our lives and the lives of so many other young people. So 10 years after he made that important ruling for mica after Michael moved in the dorm, we were able to reconnect with the judge. And he had no idea what had happened to this kid. He said, you know, that he ruled that mica could live in the dorm. So we met with his his family, his neighbors, and we showed the film intelligent lives. And we were able to thank him for the decision he made. And also thank the lawyer who wrote the the brief, I think it's called, What a joy that was at night. We never expected that, you know, it's a long story how that happened. But I think we get the the ability to talk about the transformations that have occurred, really, is what when I can't sleep in the middle of the night, I have to remember those stories as well. They're sort of like the pillow that catches my weary worrying head as well. So yeah,
Richard Feldman:in that same spirit, Emma just sent us a picture of the young woman who is in the film. Yeah, young girl, young girl, who's in the film, reading. And it
Janice Fialka:just to set the stage. So those of the folks who have seen intelligent lives Emma's teaching, second grade, and Qivana, who is the Who is the girl who has Down Syndrome has really testing Emma, and it's captured in the film very well, because she kept saying no, no, no to to Emma. And Emma has stayed in her life and her family's life supporting them to create a circle as well.
Richard Feldman:And so what I think we've learned, and Emma learned as she was teaching, second grade, is the sense of time, I think we have a very false sense of time, when you're sort of on this track of go to school, go to college, go to trade, school, get a job, make a family. That's not how the world really, really functions. That's not how most humans really, really function. It's just a cultural creation that is destroyed human beings. And mica has taught us a sense of time, just like Emma uses this example of Qivana in second grade, would not be mica at 30. You know, but now she can see because of what she did in second grade Qivana is now in high school, and can read me
Janice Fialka:just just got a video out of her reading. And you know, it's, it takes time. And that's, and that's why we need each other to stories because I reach out to parents whose kids are older saying, oh my gosh, how did you go through this? And they'll Okay, let's take this little step here. Let's take this little step here.
Greta Harrison:You've touched on so many things there. First of all, Emma, who is quite a rock star. And and we've already talked about it a little bit in this interview, how she started helping other educators when the pandemic first started. She is quite a rock star. When you were talking about helping that family those eight families together and you said Emma was part of that my first thought was, well, they had an all star team. They're helping them they had both of you and Emma, that's that's great. And Michael was there too. Oh, yeah, it
Richard Feldman:was our family was a family training with the four that I did
Greta Harrison:not know Micah was there. Were there. That's great, because you guys are not always in the same place. So that's, that's wonderful to know. But you also brought up the fact of siblings have extra layers and you probably have a more eloquent way of saying this but extra layers of empathy, extra layers of character, extra layers of early wise experience and others. There are and age would not have. And I've seen that time and time and time again. And I think that's definitely true with with Emma, for sure.
Janice Fialka:Yes. And all the research really points to that. Not that we need that. But you know, there is the scientific research that definitely, because a lot of times people, you know, I have a misunderstanding If Emma though, one of the things that she always says when she speaks, especially when she was younger, is to give siblings the value to support the siblings to have all the range of feelings as well. Embarrassed, frustrated, angry, I don't want that. You know, I think one of Emma's workshops that she did was called the title was, I can't live without him, and I can't live with him, right. So she wanted a place where she could talk about, you know, I don't want a brother with a disability. And that in some ways isn't all that uncommon. And sibling issues. I don't want a brother who's whatever, you know. So I think that's one thing she always wants to say to other parents, let us let siblings talk about what their feelings are, as well. So and you know, she doesn't didn't always want to be around him. And rather than pressure hit her to you better love your brother. I mean, we wanted to do that and say that we hoped for it. But we would say give yourself some time, Emma, maybe right now, being with mica isn't always the best thing. And again, that's more a little, maybe more extreme around differences, but not all that unusual and sibling relationships.
Richard Feldman:I'll never forget when she got a hold of this book called the sibling slam book, slam notebook. By some folks out in Myers Yeah, damn, Don, Don, Don, my God. Myers. Yeah. And it was the first book that you could give to a friend. Because she felt comfortable. And she had actually written some stuff in it, I think. And because she didn't want her friends to come over the house when you know, it's certain time in middle school or something like that. And the other part of the ingredient was the empathy. You call it empathy. I don't know what it is. Janice has an uncanny ability to listen, and would listen to Emma talk at night, on and on and on about anything and everything. It might not just been about her brother. So there's a listening part of parenting that we know is so so important. And last, the last thing that I want to say is, and this is a challenge, it's not about being haughty or anything like that. But the best gift, one of the best gifts we can give to our siblings is a circle of support, and friendships and community. Because otherwise, it falls on them for that relationship. And while it is by choice and by love, there's just so much choice in love every sibling wants about another sibling, you know, and I think the belief that parents can have the security of hugging and not the security of community building is really needs to be soul searched and it's risky, but that risk will be the benefit of the doubt my siblings always say, Just be honest with your kid. Just tell them the truth, you know, you know? And and that open conversation has been very important in our family.
Greta Harrison:Thank you for listening to Episode 12 of boring Federalist podcast 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 unborn fabulous podcast.com. In Episode 13, Janice and Rich will continue their discussion on the sibling perspective, sharing an inspiring quote from Emma. They will also touch on letting go fighting hard and loving hard, sharing resources and giving some advice 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 heard this podcast. Now please enjoy this clip of love as opposed motion. The lyrics are by Melissa regio, a young lady who had Down syndrome and what's the focus of episodes one through four in season one. The music and voice are by Rachel fuller