Born Fabulous
Born Fabulous
Season 3, Episode 10, Part 2: Janice Fialka & Richard Feldman, "This Is Really Hard Work"
Janice Fialka and Richard Feldman discuss their guiding principles, Micah's living situation, the hard work of building and maintaining circles and community support, breaking the silence, inclusion's effect on society, and much more. 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 10. 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 second of five parts with Janice Falcon 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 much more. Janice is also the author of four books and a poet. Richard and Janice are the proud parents of microfiche Alka 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.
Richard Feldman:The three principles that guided us were great expectations. Education is a lifelong process and we didn't mean schooling. And third was how does the community change that? How does Miko quote overcome? But how does the community change to create more opportunities? So we spend a lot of time talking to a lot of the community?
Janice Fialka:I think, yeah, I think an additional piece in because maybe we've been activists pretty much from the 60s. You know, initially, I saw sort of disability as a Special Ed issue, too, right? I mean, I had a sense of integration. But then various people, including Norman Coons, and many other people introduced me to this hook up a little bit of time, we didn't know like most of us that there was any such a thing as disability history and culture, and activism. It certainly people who are living it knew about it. But we didn't know that the longest sit in ever of a federal building occurred in 1977, where people with disabilities sat in for 27 days, which I know you're on, you know, viewers and readers know on if they don't know about the incredible film called crip. Camp, but not knowing that is it influences what people didn't do. So Miko was able to be part of a youth leadership youth with disabilities leadership experience when he was in 11th grade. And that was really life changing, because he began to see that it wasn't that every disenfranchised group has strong people who do bold things. So when he was in college, through, you know, a special program, and he wanted to move into the dorm, and the university said no. To our almost amazement, he said, Well, I'm gonna fight this, I deserve to live in the dorm. And so it's not just mica, knowing that he had the context that people with disabilities have protested, sat in, demonstrated, got arrested. So our call out is make sure that in your office buildings and educational settings that we celebrate an honor and recognize that rich history, very
Greta Harrison:important point. Very, very important point. And Micah did the mic and you all did fight back against that. And then he moved to Syracuse and had his wonderful, wonderful experience there that led to his great job that he has now as a teaching assistant, and a place that he loves. So thank thank you for that. Well, I you know, I'm going to, I'm going to organically go to the Syracuse and I'm going to go out of order from what questions that I originally had and go to what he's doing now at Syracuse, because he's a teaching assistant for Syracuse where he did earn a certificate and disability stuff rds, which is documented in intelligent lives. And he has had a strong circle of support there for a very long time, which we'll talk, I promise you, we'll talk about circles of support. But while he's there, he has made some changes. He has a new living situation. Do you want to talk about that?
Richard Feldman:Yeah, I think one of the challenges COVID raised was how do we create with Micah, a more organic relationship with other people. He has a staff, he has a circle, a lot of it was zum zum. And it evolves as well, his circle, it's been 10 years, 10 years this week, this week, Martin Luther King Day is when he moved to Syracuse. And, as we often say, he spoke there in August of 11 years, 10 and a half years ago, and said, I want to move here, because they get me here, because they have done such good work within disability studies and inclusive education as an institution. So we decided to buy a house, a duplex, and I have no desire to be we have no desire to be landlords, but mica and its support person, live in campers and live upstairs. And our goal is to rent out the downstairs to people who have a commitment to relationship building and community building with Micah. And it may be a family, it may be long term students, but not just do it for rental prophy. And they just developed the beautiful flyer, that would be another resource that will share. And if anybody out there knows people in Syracuse who are looking for a downstairs, beautiful bedroom place, we'll do whatever we can to make it hospitable. As long as they are caring concern human beings. So we're trying to enlarge his immediate circle to have you know, dinners more regularly, as well as his circle, and as well as the staff. So creating another entity for those relationships of community building.
Greta Harrison:So he has a he he's living upstairs and he has a roommate. Right? That's
Janice Fialka:great. Yeah, I think that, you know, it's called a living and I think a living support person. So it's some, you know, more casual support to Mike. And so there's somebody else in the, in his apartment there. Okay.
Greta Harrison:All right. That's, mica often talks about brokers. And when he first started doing this, I always think about a stockbroker. But then I realized not too long into it, that he's talking about maybe case managers or that type of thing. But he's very aware of, you know, who's helping him and he's grateful, he has a lot of gratitude. Is the broker the case manager, so to speak, is that who he means,
Janice Fialka:um, there really isn't a case manager, she definitely provides some of that support, in collaborates with mica, and, you know, but she's an in, you know, that's a term I know, I struggle with as well. But it's sort of becoming known in the field, an independent broker. So there, she's a link to the fiscal agency that does, you know, issue the checks for his staff. But the case, man, so she does some of that, I think the circle does some of that we intervene, or support that, that experience as well. And I what I want to do, especially for people who are listening to this, because it can sound like everything is in place. And we know what we're doing. And this is really hard work. I mean, anything that's good and effective takes work in conversations, things might you know, the circle of really incredibly wonderful people and thinkers and doers. But at like any relationship, I mean, Rich and I have been together for over 40 years, it takes, you know, it's the urban floor and it takes full flow and it takes time we've got to hit looks like maybe the circle is sort of waning a little bit in energy. So let's pull people together and have somebody come in and think about it. So I really think that I want to make sure aren't listening going, oh my gosh, I could never do that. I mean, we think that two of ourselves, but so I wanted to emphasize the importance of of work as well.
Richard Feldman:Yeah, so I think the question of Mike as a specific organizational relationship to his services. And I think to look at it historically, on the one hand, people created institutions, governments created institutions, and they freed people from institutions created group homes. And then the struggle of how the money follow the individual has been really the the the mantra of Centers for Independent Living and most advanced thinking within the inclusion disability movement. How do people live in the live in, in, in neighborhoods in community, and the money that the government provides through Medicaid or Medicare be used and decided by the individual. So he's the she is she, so she is not part of an agency. So they've gone from institutions, to agencies, to something they're calling brokers. And these brokers, Mike is his own, not only his own guardian, he's the person who hires the staff, she provides the support for that. She provides support for the budget. And, and, and, and she's accountable to him. But also, knowing self determination with someone with an intellectual disability means you have to be very clear on the time it takes to have full discussion, and what the options are, and learning how to be supportive and listen to that conversation between the broker and Micah and Mike and his staff. And that's complicated. I think that's part of the complication that Janice is referencing at this point. So he, he makes the decisions with support, he has a staff that will take him to medical places will take him, you know, shopping or, you know, cooking, working on his checkbook, all that kind of stuff. And at the same time, he has a circle, which talks about the much larger relationships that he has, how to where, to where, to where, and how do I find the girlfriend? How's things going in my job? When do I ask for a raise? You know, different questions like that. So he has lots of people, this is challenged lots of people, and they come and go.
Greta Harrison:And it's always evolving. And
Richard Feldman:it's always evolving.
Greta Harrison:Now, let's let's talk about his circles of support. Because what what I think, has you stand apart from most people is you started so young. And I have watched you present before Janis. So I, I want you to just touch on, you know what, briefly how it was, and, you know, elementary, middle high school, because I remember you talking about pizza parties, you know, and how it changes, you know, so if you could please start on that.
Janice Fialka:Yeah, well, when we've learned about it from folks like Jack, pairpoint, and Marsha for us. It just made a whole lot of sense, because people were friendly, with Miko when he was in first, second, third grade, you know, Hey, Mike, how you doing? But they weren't necessarily friends. And so we learned the importance of bringing people together intentionally kids together. And so the social worker went into the class and talked about why do we have friends and what our friends about, you know, just conversation and then went back the next week and said, Michael was an in the second session, you know, in that because kids know, they knew that mica had, you know, I don't know what word they use probably special needs, but had some differences. And he said, We want to be able to support my kid to be able to have, you know, to be active on in recess time and do things after school. And so sometimes, so if anybody wants to join a circle, that would be with Michael once a week and have fun. That's really important. I mean, you know, that's what it was about fun. Who wants to and then second and third grade everybody wants to write but so we picked a diverse group of kids and they met regularly. And basically it was it was to have fun, you know, who's going to play kickball this this weekend? And who's going to wherever, you know, so it was again, intentional on helping because Michael wasn't, he didn't have he wasn't he was engaged with people but he didn't always know Was he present, you know, with with what was going on? You know, the best example I can get is that the kids were irritated because Micah who didn't have a lot of words would often poke people to get their attention like this, you know, and you You know, people do when kids, adults, too, would sort of just ignore or go away. And that's not helpful in the long run. And so they role played in the circle, not just mica, but what do we do when someone does things that we don't like, and, and then they actually roleplay, you know, kids doing this and, and Micah sort of knew what was going on, he knew he did that, you know, it was a way of connecting. And so the kids said, okay, my, so they came up with the strategy that when he did do that, they would put their hand up to be like a stop sign, and, you know, count to five, or, you know, a minute or something like that, we'll get to you later. So it works some of the time. But the really big lesson that I always say is that Micah knew that that grew, cared about him. And the group no knew that they could talk about the difficult stuff. And that's critical, because when people don't, and they hide it, or move away from it or ignore it, it doesn't get better. So, yeah, so we recruited parents to be involved, I wish I would have done that earlier. And they were excited to do that. They helped plan parties. You know, again, I always say, you know, the people would sort of get be involved, and then not be involved. So we had to be active engagers, and work with staff to to help things move along. So, you know, after high school, it we were more able to engage, or we had to intentionally engage more young adults who were out, you know, no longer in school, or, or, or, or were in college. So yeah, so I've, you know, you ask me questions, if there's more specific kinds of things that you want. But, Mike, you know, for me, I was always looking for who should be in the circle, you know, especially in elementary, middle and high school. And I remember seeing one young woman who was on the cross country team, who was really she was the, the navigator of relationships and had wild hair and, and wild socks. And I said to the social worker, I think she should be in mica circle, because she's just got that personality and could draw other people in. So that that did happen, and she was part of it. So those are some things to that, that to share about the circle,
Richard Feldman:just a few others. I think the theme of breaking the silence is really, really important. There was Janice just continues to emphasize the conversations are often difficult. You don't know whose toes you're stepping on or who's listening. And it's risk. It's standing up at a curriculum night, and saying, your children may come home and say there's a student in our class who I'm not clear what he's saying. And he doesn't look like he's reading. That's our son. And you know, when educators are not allowed to, there's these privacy stuff. So they don't, they don't know how to talk about any of this stuff. But so the parents have to come forward and say, I want you to know that if you have any questions, please come to us. So it's opening up that conversation. And, and a great example is, you know, knowing that, that doesn't get the same students to go on forever, the same friends don't go on forever. But if we made a list of how these other students were impacted in their lives, to become disability, Justice lawyers, to be teachers that created circles of friends to be cancer doctors who now know how to listen more clearly, and closely to their patients who have disabilities. And I think parents professionals eat. And this is not just about our kids. This is about changing the world in which our children happen to be the catalyst and the sparks, to open up the eyes and the hearts of other people, and not in any kind of pitiful way, but in what to make, what it means to be human and the humanizing spirit of what this is all about in the beloved community of what Martin Luther King talked about. And the last example, is how Micah knew his circle of friends at college at at Syracuse, which had started all around the university and would meet at the university, after six or seven years was getting a little old. And he was now having more friends in the community or in different places at the Jewish Center, or at the credit union, the credit union or Planned Parenthood. And so he organized and he initiated and organized I needed a renewal of my circle of friends, and a person centered planning session. So we had a full day and there were like over 35 people pool there. Now, the numbers aren't, are significant. But I want to what John says it starts out small, and it just keeps going and going. And we don't know where it goes. We know that you just got to keep asking these questions, because that's how they change. And that's how we change. And that's what security means. You know, I
Janice Fialka:just want to say one thing, because it's on my mind is that the other important critical part of the circle and seeing what's happening is that Emma, who's the sibling who will most likely be around when we're not seize, and is that she's not alone in that. So the ripple effect is, is long term. And so I wanted to emphasize that because so many parents, you know, struggle with that issue as well, rightly so. So what
Greta Harrison:happens when we're gone? And what but can I add one other thing since you brought up Emma, we all know that the siblings Haven't they have extra layers to their character because they are a sibling. And when we have true authentic inclusion, those extra layers go to all the surrounding students in the class. That's why inclusion benefits everybody, which is I know what you were saying in society. So you have all of these professionals or productive citizens in society that are graduating and taking that into the world I can think of many now who I know are going to go into politics and other areas, and they had that x they had those extra layers of empathy, character and so many other things. Thank you for listening to Episode 10 of born fabulous 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 11, Janice and Rich will discuss Mike his upcoming book, the movement from AI to we thinking outside the box, turnover and support teams and much more. 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 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