Season 3, Episode 11, Part 3: Janice Fialka & Richard Feldman, "Revisit, Reflect, Reignite"

Janice Fialka and Richard Feldman discuss Micah's upcoming book, helping families develop their stories, the importance of revisiting-reflecting-reigniting, thinking "outside the box", turnover in support teams, interdependence as the goal, the profound effect of true inclusion 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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Transcript

Greta Harrison: 0:00

Hello, my name is Greta Harrison. Welcome to born fabulous podcast season three, Episode 11. 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 third of five parts with Janice Valka 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 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: 1:48

Love is all around?

Greta Harrison: 2:09

I wanted to ask you about Mike this book. I know he's got a book coming out soon. It was supposed to come out during the pandemic, it hasn't come out yet. Can you tell us anything about that book.

Janice Fialka: 2:23

Um, not a whole lot. Except that he's very excited and proud. And he's working hard with co author to tell his story. And we feel very, I guess, grateful and respectful that he has this opportunity to share his story because one is we all want an audience, even if it's just our next door neighbor, or spouse or friend, who says Tell me more. What else I want to know, I want to see you or hear you or whatever it might be. So just in a general sense, those are a few comments that I would say we're trying to have. The

Richard Feldman: 3:11

woman who's doing it with him is a woman who did her dissertation on Mica. And she met with him regularly for an extended period of time for an extended multi multi multi 100 Page dissertation. We never talked with her during that entire period. And it's an amazing piece of his early history and questions about his life in his dreams and his hopes and his relationships. So now, he's much more mature and much. And she is also much older too. And both of them are really having conversations with the folks from inclusion press because that's who has said they are, you know, tentatively committed to publishing it. And so I think Jack will definitely be nudging them to ask deeper and deeper questions, and we'll see where it goes. We've had a few phone calls with her and him but they really continuing to reevaluate how they do it. And the effective COVID effective college because his story other than Janice's book is not told in his words through where he's written some articles. With that without and this will be an opportunity that will trace it for the last 10 years as well, which is really a very significant 10 years in his life.

Janice Fialka: 4:41

But since you asked that question, Greta, I want to emphasize too. In addition to what Richie had just said about the book and the co authoring that everyone's story is important and I hope that your listeners are aware that they as family members or siblings or as people with disabilities, they have a story that's important to share. One of my favorite quotes comes from the author, Christine Baldwin, who says, words are how we think stories are how we link, how we connect with each other. And I think that's a lot of there's a lot of truth to that. So that when someone hears not just mica stories, but I mean, in many ways, that's what you're doing. Greta in such beautiful important ways, is giving a forum for people to share, because then it clicks with other people, Oh, I could do that, or that gives me the power. So just wanted to emphasize that aspect.

Richard Feldman: 5:46

We had the opportunity to do a family workshop with a group of families in Pennsylvania. And the model of the conversation was to develop PowerPoints for each of the young people that were there. And during that process,

Janice Fialka: 6:08

the PowerPoints were all about me telling my story,

Greta Harrison: 6:12

for each self advocate.

Richard Feldman: 6:15

And in the process of doing it, the parents and each of the other families began to learn a great deal about telling the story. And that was, that was one of the most inspiring things I had ever seen, because he saw everyone come alive, in terms of they're sharing their story publicly, because what has been a private conversation became a public conversation.

Janice Fialka: 6:40

You know, we're really going off on this. But what I'm remembering too, was that one of the young people who was maybe about 18, a wonderful musician, was not verbal. And his story through PowerPoint was developed in, you know, with his family and with the support staff. And when he went to show it, he didn't use words, he actually stayed in the back of the room sort of hid behind a chair, because he was most comfortable there. And he pushed the button. And there was his story on the screen. Right? So there's again, we're always reminded of there's so many ways to be in the world. So yeah, stories are powerful.

Greta Harrison: 7:28

I love that when you had that experience with these families about how many families were there,

Janice Fialka: 7:34

but eight families? I think

Greta Harrison: 7:37

that's a great idea. And that's an idea that maybe some listeners could do.

Janice Fialka: 7:42

Oh, absolutely. We did a Friday night, Saturday, and then a Sunday morning. And we you know, did a lot of storytelling, and then they develop theirs on their own. And, you know, we all of a sudden decided because you know how movement is important, you know, when you're talking and being together. And so we did the Hokey Pokey just the end of it. Because you put your whole self in, you put your whole self out, you put your whole self in and shake it all about. And that's what it's all about. And that it really became sort of a theme, you know, we put ourselves in when we want to connect with people. And then we also have the opportunity or the need to pull back as well, that rib. So yeah, it's it is I think retreats bringing families together is can be very empowering.

Greta Harrison: 8:37

I love that was the goal of that retreat coming up with Person Centered plans was that the goal? What was the goal,

Janice Fialka: 8:45

really to strengthen their relationship because they were all people that had families that had one person with a disability, usually young person or on 18 to 26. And also to is Ritchie always eloquently says to break the silence, to talk about the joys and the struggles and to feel a connection with each other. And I think but I think a lot more of it was knowing your story and developing your story and feeling a connection with each other. Does that sound right?

Richard Feldman: 9:22

Yeah. And our daughter Emma was there and was very significant in helping to facilitate the PowerPoints and the templates and moving us all around. So that helped a lot for folks that and Janice obviously does a lot of PowerPoint, but it was a you know a group situation and a teaching situation. And it's really the movement of i Two we it's really what any of us who were part of the women's movement knows that it was the consciousness raising and the conversation that broke the silence of thinking you're alone in this either terrible world that has such injustice is or a Around pain from the realities in which we, we have to work with to turn them into joys and turn turn them into something positive

Greta Harrison: 10:14

to turn them into we what we working towards helping create the world we want to see. Correct? Absolutely. Absolutely. I love that. That's thank you for sharing that because I think that's a great idea. Are there any other out of the box ideas, since you mentioned that that that you all have done with families or I know that we've already talked about in season two, when I spoke with mica, I can't remember if we've spoken about it in our interviews so far. But we did discuss how mica came to kind of a stalling point with his circles of support. And then you shook it up. And you brought in this facilitator and you guys, I have if anybody wants to see if you go to born fabulous.com and look on season two on Mike his page, I have a picture of this beautiful plan that they drew out for Mike it well, it's a it's like his journey of his life, really. And you had this amazing session where you had, like 3035 people, some many in person, some on computer via zoom, and you had this facilitator and that you shook it out of the box to reinvigorate a circle of support. Right. Yeah,

Janice Fialka: 11:30

I mean, what you remind us of is how important it is to revisit and to read conversation. Never use that word, but to reflect, to think about because no relationship, at least that I know, stays at, you know, an even keel and drops off. Everybody has their own lives. And so we need to come together. I mean, and and intentionally talk about what's working, and what are the gaps. And Micah had a sense that things weren't, weren't working as well. I mean, it you know, he thought about it, maybe I need to move back to, you know, our home Detroit area. But it became clear that there was more to it. So that has to I mean, we're back to that place, again, where we're meeting with Micah with each of the individual support staff to talk about how are things going is how, you know, support staff needs to also find joy, and fulfillment, if you will, in that relationship. So for example, one of the support staff, loved going to the volleyball games at the university, and didn't have a lot of people to go to a lot of people weren't interested. But she asked Mica. So mica said, Yeah, I don't know much about it. But he went, and so it's, it's that reciprocity, it's not none of this is, you know, Greta is one way. So anybody who thinks that they can pull together the circle of support, even if it's large, or just a couple people, and think that it's going to glide off it, you know, it won't, it just doesn't. And so I think that is a reminder to all of us to come back and reflect and reignite. I think

Richard Feldman: 13:24

part of the challenge of family is to constantly support the expansion of the relationships that our children have, or young adults have. And they're doing it themselves, and they're going through changes. So it's this constant changing relationship between where Michael lives and what to eat with whom he is living with in his community. So there's re assertion and re imagination of the circle for priek. Right before COVID was really an expression of Mike, almost seven years older than when he started his circles in Syracuse, and more that he now knows many more people in the community than just the university folks. So his center of relationships was changing. So he was he felt that, and that was really the the inspiration and the challenge to us to work with Michael to bring together a facilitator to do a person centered planning, and the mapping you're talking about. Yeah.

Janice Fialka: 14:34

And you know, we were always sort of I bet other parents can relate to this, like on the search for who can we pull in to, you know, engaging with our son or daughter, you know, what connections can we make? And I'll just very quickly tell you, I remember we were in Hawaii, and we had presented and a mother came up and was talking to us and she said, Oh, I My sister in Syracuse, she's adults and has kids and she likes to do a lot of volunteer work. And she, she, she works at a soup kitchen or something like that. So I'm going, how do I connect this woman to Micah, who's in Syracuse, while I'm talking to her sister in Hawaii, you know. And so, I think that isn't always easy for any of us. You know, we tend to be a little bit more out outward in our relationships. But I do think that as I said earlier, the intentionality of inviting people in in lots folks aren't going to come. But you know, my goal is one out of 20 have this incredible opportunity to meet someone new and do you know, learn something about themselves as well as the other person? That

Greta Harrison: 15:51

is so true, you always have to be thinking outside the box. And the wheels always have to be spinning, don't they? Yeah.

Janice Fialka: 15:57

You know, I remember when Mike learned that phrase, out of the box thinking this was when he was in high school. And when in he was intrigued by it, you know? And when he would meet people, he'd say, hi, you know, I'm like, and are you one of those people that think inside or outside of the box?

Greta Harrison: 16:17

He would ask him right off the bat. Right. Yeah. I love that. Yeah. Right to the point. That's great. That's, that's I love that the raw honesty there. Let's get to the let's get to the point there. Yeah. I wish I could do that.

Unknown: 16:38

Practice.

Greta Harrison: 16:41

All right. So now, we've talked about Mike his living situation. And I know that he has a support team, does he have an actual roommate? Or is it more of a support team? And the reason I ask is one of the issues that a lot of families have is, and self advocates, I know and just always say families is the constant turnover in support teams sometimes. So can you address that with your experience?

Janice Fialka: 17:14

Well, you've named it, it is an it is a reality. I guess sometimes I'd say it's an issue. Sometimes it's a gift. Mica has currently a wonderful roommate, who is a med student, and he was Mike, his roommate a couple years ago, and now is currently his roommate, but he too will be leaving. So each, each session, if you will, has been about a year. That is a person who receives some compensation for, you know, light engagement, if you will, more natural supports, I guess you could call it. So his rent is, is covered. And then he hangs out to mica they just went to the store together and do some shopping once in they usually have dinner together watch TV or unwind in the end of the day. So that is an issue is this and Michael? I don't you know, I think he's comfortable. If we share that, you know, that's a frustrating point for him. He knows that almost every year, someone new will come along because many of them are students. And so they they do move on. So I'll let Richie talk about our hope is a design for maybe dealing with some of that.

Richard Feldman: 18:37

Remote, always reminded of Judith snow from the inclusion folks in Canada, who was the first person to have the money, follow her and let her be freed from the institutions in Canada, and one of our mentors. And she had over 600 staff folks. And people that worked for and with her over her lifetime and outlived many, many expectations of her and I say that because I think one of the most painful things is roommates and changing staff. And you know, with the roommate, it's he's had roommates that have been, you know, have not been good at all. Not responsive, not not, not harmful, but just not good, you know, not engaging and so forth. And unfortunately, that's part of inclusion and living to learn how to deal with roommates. I mean, we've all had roommates that are not so good. Whether they college or after college or you know, so So that's unfortunately part of it, it hurts to see. Finding a long term roommate is an interesting challenge. I don't know how that emerges, really but so What we decided to do was, and I think we might have shared some of this is purchase a duplex in upstairs and downstairs apartment in Syracuse. And the hope is that he has a roommate that he selects as he currently does now. But then the downstairs rather than just renting to students rent to people who have some care or concern and wanting some level of relationship with Micah. So it enlarges is intentional community, beyond his roommate and beyond, different from his circle and different from the neighborhood, in different from his staff. So it adds another aspect to relationship to where he, you know, he knows the people that care about him, you can go down there, his roommates not there for a weekend or a week, he's got some people he's friendly with, and may have dinners, you know, here and there with them and stuff like that, you know, plant the garden together outside, who knows? And

Janice Fialka: 21:06

I, you know, I think the reality is, it's easy for me to say this, it's not how I necessarily feel in the middle of the night, is that as family members, or friends that I want to be there for my kid to validate those feelings of sadness and frustration, you know, I, there is no magic one. I mean, it may be the reality for a while longer than he wants, or we want for him. That there is that, you know, every year sort of changing. And so we have to make sure that we, I believe, give him the opportunity to talk about that. And also to point out how he's gotten, you know, in a sense better at identifying what he wants in a roommate. And so when one situation didn't work out, well, he reached out to other people and said, Who else has had problems with roommates? And how did you deal with it? So that's an issue that he could take back to the circle of friends. So I can't make all those things better. Oh, boy, do I wish that I could. What I have, what I think I'm required or want to do is be able to be there for him to acknowledge it. And then to find the next steps that allow him to continue to feel some good and good about his life.

Greta Harrison: 22:30

Thank you for listening to Episode 11 of boring, fabulous podcasts 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 12, Janus enriched we'll discuss interdependence, different generational senses of security, the positive effects of independence, interdependence, the true meaning of inclusion, mica, Sister Emma and the importance of siblings perspective and more. Please follow on 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