Born Fabulous
Born Fabulous
Season 3, Episode 9, Part 1: Janice Fialka & Richard Feldman, "To Hell with Bootstraps"
Janice Fialka and Richard Feldman discuss inclusion, how they got through the pandemic as a family, overcoming individualism, learning how to ask, letting go, and much more of interest to families of children and young adults with intellectual disabilities. 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 nine. 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 first of five parts with Janice Bianca 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 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.
Rachel Fuller:Love is all around
Greta Harrison:I am so grateful to have Janice Fialka and Rich Feldman here to talk about the wonderful journey that they've had with their remarkable son Micah, the Alka Feldman, who we all know very well from intelligent lives. Any I'm very proud to say he was a big part of season two born fabulous podcast with his best friend Tori cedar. So thank you for being here.
Janice Fialka:Hello, our honor. We're excited. Thank you for all the work that you do. You You really provide such a wealth of information and spirit to all kinds of folks. So thank you, Greta.
Greta Harrison:Thank you. Thank you. Now you both have such accomplished lives, helping so many with your books, your award winning film, speaking engagements, workshops, teaching. You give advice to professionals. And I love your poem. I love your poem, advice to professionals who must conference cases, I want to say that publicly, I want to say how beautiful that is and how you're speaking as a parent, to the souls of other parents, and hopefully changing the souls of many educators. So Janice, I thank you for that. And I want to say that publicly. And I'm going to post a link of that to born fabulous podcast.com under our many links that we'll have for season three. So having said all that, catch us up on what you all are up to these days, you know,
Janice Fialka:we just keep growing and stretching as a family and just most recently spent three weeks with both of our kids in Boston, we live in Detroit, but we were able to stay in in Boston for three weeks. Our daughter Emma, who has been a second grade teacher in Boston for a principal in Boston of an elementary school. So we get to hear a lot of the her stories and her experiences. And then Emma was our Miko is with us as well. So we did a lot of talking as a family. I mean, we're at you know, with every, every relationship every family there are ebbs and flows. There's good years and bad years. Sometimes we say it's not about good days and bad days. Sometimes it's old stretches of, you know, challenges. I would say recently in the last couple of months, there's just some things that we've worked out are coming together. So Mike is visiting us now here in Detroit for a week and then he'll go back to where he lives in Syracuse. So I don't know that's a little bit of a family update. I continued to speak in present mode now mostly through zoom and various kinds of classes and for parent groups, and Richie very busy. Oh,
Richard Feldman:I think the part of the part of the visit in Boston where our daughter lives is that she's principal of a school that's totally committed to full inclusion. So in fact, that percentage of young kids with disabilities is like 30%, in this public school, so she's totally, totally committed to this and changing the culture. Because in many ways, that's what our journey has been is about the changing of culture, let alone the community advocacy and the advocacy see in the opening of doors with Mica. And I'm very, also very active in a lot of community work in Detroit, looking to create a community land trust, that is committed to Universal Design housing. That's off the grid in Detroit, with people from the neighborhoods. And we work with different disability organizations in Detroit, who are fighting insurance changes, insurance law changes, that will hurt people, and all other kinds of committed work around this. You
Greta Harrison:all are very busy, in a good way in the best possible ways, aren't you? I'm glad you brought up Emma, because I think much of the audience may know this, but not everybody that Emma is also a very big inclusion advocate. And one of the great things she did was when the pandemic started, she quickly, organically got educators together to volunteer and help students who needed help online. Because many school districts were just learning as they went, and a lot of kids were suffering and behind and struggling. And she said, Hey, there's some rock stars out there. Let's get together and let's help. And that was amazing. She's, yeah, I look forward to meeting her someday.
Janice Fialka:Yeah, yeah, there, you know, she Yeah. And I think what she has learned and in our family, and from so many other people is the importance of connecting with others. And so she did this call out and said, who needs help, and who wants to offer it? And, you know, I connected with a mother in, in one of the southern states and a teacher speech therapist connected with someone in Oregon. And, you know, it is the way you you, you know, you get you get how the expression goes, I'm making a way out of no way. And one way you do that is by Yeah, being bold, and you're asking for help.
Greta Harrison:Yes, you've raised to bold children, that's for sure. And the world needs bold changemakers. So thank you for that. Thank you for that. And in your update to if you could tell us now the pandemic has been going on for you know, we're starting 2020 now or in 2022, happy 2022 to you all, by the way. But I know at the beginning of that, that that affected you a little bit if you can just tell us at the beginning of that how you coped with that as a family.
Janice Fialka:Well, we were actually in New Zealand or Chennai, where we were showing intelligent lives and obviously needed to come back. Yeah, I mean, it was It was chaotic, scary. Frightening. Michael was in Syracuse, the whole issues issue of who could support him given the potential for, you know, serious illness. I mean, everything was up for grabs, and no one really knew what to do. And I think Emma, in addition to other staff, people really came forth. And one of the things that we could really build on is that since third grade mica has had a circle of support, circle of friends, an intentional gathering of people, not always not the same people through the years, but the same concept. And so a call out to the circle to offer whatever kind of support they could offer. We you know, we were all new to zoom and all that and so mica circle, Zoom together. We did then, because he was in his apartment alone, we were unable to once we got back to Detroit, we had to quarantine for two weeks, and then drive there. So there was a lot of alone time for him. So we I reached out to a lot of my friends and said on Zoom. And so a friend of ours who does yoga, was willing to do yoga with mica and another person who did art, you know, did art another person who played the cello came forward. So that intent, you know, I mean, one thing I think that we've learned over and over again, is the importance of reaching out to the community. People may not always say I can help, but more times than not people will. So I think that was and then eventually Mike did come home for three months I think and that was an adjustment he was used to living more interdependently and and So, um, you know, so. So being at home was an adjustment for him as well. You know, he didn't necessarily want to be around his mother and father all the time, and what could we all do basically go for a walk. So I don't know which of you, I think the, you know, the
Richard Feldman:the Civic was how isolated people became as well as the opportunity of zoom. And so people watched movies with mica, and people had dinners. At the same time, mica had dinners, that making it easy, but making it bearable. And I think all of us have sinned in this period of COVID, that, in many ways, it's uplifted the significance of people with disabilities who need and use different kinds of way of communications, everything now has, you know, American Sign Language, everything has different, you know, captions. And so zoom has learned as well as we have all learned in this period. And it connected people in ways that people would not have been connected. And so it's all about those relationships, it's all about community. And the hardest thing for parents or professionals is to overcome their individualism to think that they can pick themselves up from their bootstraps. Rather than reach out as Genesis asking for help and create interdependence. Sure,
Greta Harrison:we're in Africa.
Janice Fialka:Right? And, and it's, I mean, it's not not like, once you learn it, you can always do it, because, you know, there's that thought, oh, I should be able to do this myself. But, you know, it's, it's ridiculous how long it takes us to reach out and say, Hey, stuck here, or I, you know, I need, you know, whatever it might be, I need to, I need someone to, you know, do yoga with Mike on, on Zoom or whatever. So, anyways, that's, that's our mantra over and over the phrase that I use is learning how to ask, not with apology, but with dignity and intention. For help, yeah. Yeah, learning to ask for help with our apology, but with dignity and intention. I love that quote. And I think, and we see that we see Micah do that. And AMA, as a principal, I really, really respect the way she's able to reach out to the community of educators and parents and say, Hey, I'm doing this in the school helped me think this thing through. And Mike is also brilliant at being able to do that. So I mean, that's really the the skill and the attitude that we want. I don't have the quote in front of me. But the opening part of the quote is, to hell with bootstraps, you know, we all need.
Greta Harrison:That's great. Do you do remember who did that quote by any chance? Well, I'd
Janice Fialka:have to, I know, I have it upstairs. So when, when we're done, I'll give it to Allah send it to the whole world and the author. Okay.
Greta Harrison:Well, I know that as I'm watching Mike on social media, and your family's very close, so you get together fairly often. And when you do, he's always so excited. But at the same time, he's always excited to get back to his place. And as a fellow parent, I look at that, and I smile, because that's my goal for my daughter. And I think that's the goal for many other parents, you know, that, that she can feel close and know she has a close family, but that she wants to get back to her own place, and be that independent. He's very independent. And that's, that's why one of the many reasons you all are such gurus, when it when it comes to this least
Janice Fialka:we could tell you all the times we've failed, our faults are helpful. There's a lot of those and so we don't want to, you know, give an impression that we know what we're doing. I mean, there's certain key principles that guide us. But there's a lot of, you know, tears fears, you know, and some tears as well. And I do want to emphasize that the the other principle that we learned and again, from other people, really leaders in the field was that what we're striving for, for all of us is inter dependency. And you know, this concept of independency. It is it doesn't exist. And so I think we set up people, especially people with disabilities to think that you've got to do it alone. You do it yourself. And really, the key aspect is when people an individual can decide what it is they they want their dream, and then how do I you know what resources or people do I help to activate that so we don't lose the sense of independence, but we do it in the framework of interdependence. That's very important.
Greta Harrison:And
Richard Feldman:it's I think it's critical Go, from our perspective is to also on this, to put into the conversation. Because of our commitments and upbringing from the 60s, we've had the privilege of seeing the raising of our children as a social question, not just how do they go to school, get a job and get ahead, but how do they have meaningful lives to reach their potential? So we've had that privilege, we've also had the privilege of having jobs and having the freedom, we're both retired now. And we can travel. That's not the privilege, that's not the conditions that most people have. So the importance of how they get support, because every parent wants what I think this kind of, of how do you create the support and the opportunities for your kids to reach their potential. But it's a long journey, and it takes a community to do that. And we have become more and more individualistic in our society. And defined success is how do I make it rather than how do we create this sense of community? So I think it's critical that there's privilege involved, that has given us opportunities and resources. And that makes it easier. At the same time, we have to be saying, how do these conversations reach communities of people that have not had this privilege to also, they also recognize this, this is not new to them. They've relied on community to survive? In many ways. So I think there's a lot involved in this conversation.
Greta Harrison:I love that. Yeah, it sounds like something we could talk about all day, which unfortunately, we can't today, but we could. And maybe there will be other conversations. So thank you for that. Now, we all know, a lot of Micah's journey in his later young adult years because of intelligent lives. But I want to ask you about maybe some little things you did when he was in middle and high school that helped prepare him for interdependence, I'm gonna start using that term instead of dependence, independence, but both his independence and his and his independence, because I think he has both. And, and the small example I'm going to give is, Are you all familiar with, I'm determined, which is a program at George Mason University that they've been doing for many years, and it spread to all 50 states, I think it's a program where families go every summer for a short period of time, and the young students are separated and stay together. And then the parents are separated and stay together. And they're basically learning how to be good self advocates, and they're learning how to be more independent. And I remember at one of those when my daughter was in middle school than saying you need to make start making some goals, instead of just talking you need to make goals and achieve them. And one of the short calls I made was her waking herself up in middle school. It's something we don't think about. But you know, it's something that many college students who don't have disabilities don't do. You know, it's, it's, it's a skill. So that's just my tiny example. What examples do you maybe have, that you can think of?
Janice Fialka:Well, when at you one thing we learned is the importance of giving mica choices. So if we asked his asked, you know, a question of him, what do you want to do? Lots of times, he wasn't able to either call out the word call up the words or didn't always know. And so I mean, as basic as you know, asking when we could you know, what do you want for dinner, macaroni and cheese, or, you know, peanut butter, jelly sandwiches, or whatever it was. So that concept of his being able to articulate what he wanted that we respected that when we would go to the doctor's office in this was when he was, I don't know, eight, nine years old. I would, in you know, how you sign in your name. And I would say, Michael, you can go up there and sign your name right on that line. And he, you know, he would sign his name, which basically was at that point and x. And I had to overcome my like, I don't know, insecurities, right? I mean, here's your kids signing an X and everybody else's, you know, can spell out their name, but I believed, or at least I had to hope that that little step of, you know, identifying who you are taking on that task was, you know, going into his bones and the last exam Well, no, it turned to Rich's that it comes to mind is that when he was in fifth grade, he started coming to his IEP meetings, the planning meetings. And he wouldn't stay for the entire time because as he'd say, they were very boring. But we he had an opportunity to share two things that he liked doing that, that year in school, and what he wanted to do, and and he welcomed everybody and stayed for maybe 15 minutes and then moved on. Eventually, he stayed for all the Meet the entire meeting as he grew up. And then in sixth grade, he always had a couple of friends with him, that helped him plan for the meeting. They helped him do what we called PowerPoints, Whoever heard of those right now he live by them, but you know, he was doing the PowerPoints identifying his needs, as want. So those are a couple of examples that come to my mind.
Richard Feldman:Just add two more. Adam very early age, Janice took Micah and his friends from the circle of friends to go speak, at Wayne State University to the only inclusion education class that was going on, and Miko would, you know, introduce himself or say a few words. But it was saying you have something to say. And it meant a lot to those other young kids who are now speaking, you know, we're speaking your college classes at the age of, you know, Munchkin age. And the other the other one is I forget what the other one is. I had no, I
Janice Fialka:take one that I remembered because we you know, it's really important to know that when and, and agree on a lot of things. And even to this day, we often what might go into a meeting or an experience. And he hears one thing, and I hear the other thing, and of course my ways the right way. No, I'm just kidding. But it just it just, I mean, it relates our relationship is critical to, you know, supporting mica as well. I mean, the kids need to know that we don't always agree, and are good days we are, you know, we can compromise. And on our other days, it's not always easy. But anyways, back to the story. I remember, it's hard for me to imagine this. But well, Michael was in middle school. So maybe around fifth or sixth grade. And we live about six blocks from the house, and we are from the school. And we'd always walk I'd always walk Mike at a school. And Rich believed that mica could walk to the school by himself at this point. And it was I just couldn't imagine that he could do that. I mean, you know? Yeah, but he might Richie really pushed it and, and I succumbed. And, of course, mica did great. You know,
Richard Feldman:they also went away to camp, you know, there's these why camps there, these Jewish summer camps. And he went away for, you know, a week here and then a couple of weeks, you know, so it's about, as Jada says, letting go, and different stages. And security is not holding on tight. It's letting go with lots of love. Well, the letting them make mistakes. Yes, yes. Yeah, they make mistakes.
Greta Harrison:Yeah, the idea of risk, the dignity of risk. And
Richard Feldman:it's easier for boys than it is for girls, for parents of boys than it is for parents of girls, and easier for parents of white boys and girls than it is for kids of parents of color. And black folks.
Janice Fialka:Yeah. You know, and so yeah, so those are some examples. I know circle of friends, which we've already mentioned, great expectations, you know, our beliefs are basis. And we tried to always what we learned over time, is not bombard them with all the 15 things we wanted them to do in the class, pick two or three, and really focus on that. Because if you come in with too many demands, people turn off, you know, teachers are I mean, especially we know this more from Alma. I mean, they're overwhelmed. And then just mica in the classroom. So, you know, we have a lot of these ideas in our books as well. And we've learned them from other parents again, asking for help. Now, you know, I remember feeling a bit depressed. This is sort of a different situation, but I remember feeling some depression around and fear it when Michael was in 11th grade. Because as I thought about what what are we going to do pass die school. I mean, this was before kids went to college. I mean, it was terrifying and it's sort of reemerge and reemerged, the, the the worry and maybe some of the sadness right now. And so I reached out to a couple of mothers who are about five or six kids who are five or six older than my years older than Micah, and said, what's going on? And and I just felt this camaraderie. They said, Oh, yeah, we went through that as well. So yeah, so I keep going back to the story of connecting with other people.
Richard Feldman:Lastly, the story that we Janice shares in the book in, in the PowerPoint, and when she speaks is a story of mica going to pre preschool. And one of the themes of every January was the Rosa Parks story. And they would play the Rosa Parks story. And what that meant was mica was given the sense of at a very early age that disability was not only a difference, but a social question for social movements and change. And that's, I think, a critical part of the gift that my guest has seen, you've been able to participate in. And if we get a chance, we'll talk about Michael we'll talk about what we've tried to do with his house and in Syracuse at this point as well.
Greta Harrison:Thank you for listening to Episode Nine of born fabulous podcast third season. I hope you enjoyed it and want to hear more. Some short video clips for most episodes are available on our YouTube channel and unborn fabulous podcast.com. In episode 10 Janice enrich will discuss guiding principles. Mike is living situation circles of support, breaking the silence and much more. You will enjoy several golden nuggets of wisdom they share that are memorable quotes. Please follow and like us on Facebook, Instagram and Twitter. If you enjoy this episode, I'd be honored if you would leave a review wherever you heard this podcast. Now please enjoy this clip of loves the potion. The lyrics are by Melissa regio, who had Down syndrome. The music and voice are by Rachel fuller