Born Fabulous
Born Fabulous
Season 3, Episode 16, Part 3: Micah Fialka-Feldman & Katherine Sanderson, "Micah's Circle of Support"
Micah Fialka- Feldman and Katherine Sanderson are interviewed together in this episode. Katherine is a critical member of Micah's support staff. This is the last of three episodes. Micah and Katherine talk about his strong Circle of Support, goals for the future, technology that helps Micah, social media, advice, sweet and funny stories, and more.
Micah is best known as one of the stars of the acclaimed film, "Intelligent Lives". He is a teaching assistant at Syracuse University, a sought after keynote speaker, and respected disability rights advocate. Micah has an intellectual disability. Katherine has experience in the disability and medical fields, and strongly believes in "working with" young adults instead of "for" them. Katherine does not have a disability.
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Hello, my name is Greta Harrison. Welcome to born fabulous podcast season three, Episode 16. 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 is the last of three episodes that feature microfi Alka Feldman and Catherine Sanderson. Catherine is one of mica support staff, a critical member of his team. Mike is well known as one of the stars of the acclaimed film intelligent lives. He is a teaching assistant at Syracuse University, and a sought after keynote speaker, Mike, his book opening doors is scheduled to be released in the summer of 2024. Micah has an intellectual disability. Now, please enjoy this short clip of the ring. The lyrics are by Melissa regio, a young lady who had Down syndrome, and what's the focus of episodes one through four and Season One, the music and voice are by Rachel fuller. Now let's talk about that circle of support. Let's talk about you know, how it's working. Now, you know, you had it when you were in elementary school, you've had it all throughout high school and college and and now in this stage in your life, how does your circle of support work? Like? How often do you meet that type of thing?
Micah Fialka-Feldman:Yeah, um, how it works is I have a meeting once every other month. Right now they're on Zoom, I'm hoping to have a face to face meeting sometime in the future. And then and say, they're in Germany, it is good, because people can join on Zoom like friends from other cities and states and building one hour and, and they come up with great ideas. And, and I come up with an agenda and they're, they're this great meetings and, and great like things about, like things had to help me. Thank
Greta Harrison:you for that input. I love that your that you just mentioned there, you keep it to an hour. So you want to make sure that you're using everybody's time is valuable, and you're using it to the best of everyone's ability. And I love that you said that you come up with the agenda. Do you is is do you have any support staff and those circle meetings?
Micah Fialka-Feldman:Yeah, yeah, they, they do come to the meetings, and then my broker and I, she helps me facilitate the meetings, but the staff to come to the meeting. Yeah.
Greta Harrison:Okay. All right. How about your family, because I know your family is kind of like, they're always there for you. But they're also hands off because they want to encourage your independence. So how how's your family involved in your service,
Micah Fialka-Feldman:my after last weekend, my sister and my sister and her fiance came and my parents came, it was nice that they do come and and they do like, share their thoughts and ideas and, and, and my parents have come to lapse in means my sister. She's a principal and she's super busy. But her her and her fiance came good and she shared some great, great, great like thoughts too.
Greta Harrison:And while I like that you said your parents come to a lot of meetings and your sister and her fiance were there, but they're not at every meeting, are they? No, no. Okay. So that's that's what I meant about the letting go. I mean, they're they obviously love you so much, but they also are letting you go a bit. So the circle support is important to you. So if you have you mentioned you know, COVID your roommate situation when these things pop up. You reach out to your circle, right? I
Micah Fialka-Feldman:do. Yeah. I like sometimes like with the My situation I did, but I haven't really told them the whole story. That guy, I kept it with my staff and broken parent tree. It like really happened right? The week after the last meeting I, I really haven't sent any big updates, like maybe late like, I haven't really like the guy texted me or vibe and send out like any mass email to anyone.
Katherine Sanderson:You haven't been ready to meet their support yet, right? Yeah, your circle is full of people who cares about you, and also have really good resources that you can tap into for various things in your life, and you just haven't kind of gotten to the point where you're ready for their input. So you haven't needed to call on them yet? Yes. You're that sort of Inner Inner bubble of support before you've gone out to your circle. Yeah.
Greta Harrison:And well, and that leads me to my other question. And I, I know the answer to this, but I'm just asking, so everybody else can hear. Your circle is made up with people who obviously have different areas of expertise and different kinds of relationships with you. So if you have a question, a personal question that has to do with maybe dating, there's certain people you would reach out to? If you have a question that deals with your health, there might be others who reach out to you if you have a question that deals with maybe making a change in your living situation, there's others that you would reach out to correct. I mean, they all have their own.
Micah Fialka-Feldman:Yeah, they, they, if I like came for a doctor's appointment, I would go to my staff first because they I see them more than some of the staff and then I would send updates to everyone if I want your and then but I sometimes I feel like certain updates, but sometimes I got my staff and my parents or my broker and then I go to my circle.
Katherine Sanderson:You will call upon your circle sometimes if there's an appointment that a staff isn't able to Yeah, to. Yeah. Also, when there's specific health questions that you're wanting to put on, you'll reach out to people in your recent experience with kidney stones. Yeah, you were wanting to know. And then there were a couple people in your circle that had specific experience to be able to share with you and be checking in with you. And yeah, so I think there's always you do, you do have a good inner inner layer of support. But I think that you really skillfully and smartly, use your circle. When when you need them. And yeah, and people are happy to help you in that way. And people are sometimes they say no, I'm not available right now. That isn't an area of expertise for me, and, you know, point you in another direction. And yeah,
Greta Harrison:that's good. And I wanted to have this conversation. So people understood that it's a fluid circle. It's not just you meet every other month. You have relationships with the people who are in this circle. Yes. And that's what helps you be so strong. And that's what helps you with your voice. They help you get your voice out, right. Yeah.
Micah Fialka-Feldman:Like they go. Yeah, so like, like, I don't like share, like my, like, I don't share like my personal budget with them or like, I like certain things with like, my whole circle.
Katherine Sanderson:Yeah, more really private things there. Because you you're not looking at them as as your your best friends or your you know, intimate partners. You're looking at them as as a structure of support and friendship. Yeah. So you know that you don't need to share every every personal detail with all of your circles. Yeah. And that you you can utilize their support for for the bigger thing. Yeah. And broader
Unknown:things. Yeah.
Greta Harrison:Well, what are some of your goals for the future Micah?
Micah Fialka-Feldman:I think right now trying to find a new roommate keep living in Syracuse, New York. Maybe finding a girlfriend when I when I like when I when the right is the right time and this just being healthy and just doing the things I'm doing to keep healthy.
Greta Harrison:Okay. All very good goals. All very good goals. Now, are there any little things they might seem like everyday things to you, but any things that help you be independent, like for instance, something on your wrist Yeah,
Micah Fialka-Feldman:I I like to have an Apple watch that i i can wear during the day and night and I it helps me track when I'm running when I'm sleeping and, and it helps me know about my calories and it's just a great, it's a great watch.
Greta Harrison:How long have you been using that?
Micah Fialka-Feldman:Since since my birthday when I turned 30
Greta Harrison:Okay. Do you use one of those smart devices that has a name? I can't say it because mine will turn on in my house, but
Micah Fialka-Feldman:no, I did. And then I just got weird about it now. Like I have it in my bedroom, but I took a break from it. It was just weird.
Greta Harrison:Okay, so you don't really depend on that. Is there? Is there anything else that helps you? Um,
Micah Fialka-Feldman:yeah, I have Siri on my, my, um, my phone and Apple Watch. Yeah.
Greta Harrison:So you talk to Siri? I do. Okay,
Katherine Sanderson:theory does dictation for you. Right? Like Siri? Yeah. Well be a scribe for you.
Micah Fialka-Feldman:Yeah, yeah, she he does a good job. Sometimes he doesn't put the right words in my messages. But okay,
Greta Harrison:so you're using Siri to talk and make messages. That's, that's a good tip. Is there anything else that you think of that in your everyday life helps you be independent?
Micah Fialka-Feldman:I'm learning now. Like, I'm like, am I calm down? Like I've learned how to wash my hair because I have it in my calendar now. And I wash my hair and put things in my calendar to knowing when to wash my hair. And when the cream on my face? And
Katherine Sanderson:yeah, not that you didn't know how to do things, but more that you didn't have a sense of what was expected in terms of frequency. Yeah. And again, not that you weren't even doing them? Yeah, maybe you were doing things too much, or maybe not enough. And so you found you asked for prompts to be put in your calendar. So then you see that this is, this is a good day to change my sheets every week, or this is the day that I'm supposed to wash my hair. And yeah, I don't have to wash my hair every day. But I should shower. It's just, you know, just getting a better sense. And using your calendar in your phone to be those reminders. And I think you're also getting more, you're you're making more requests and ways to help you be more independent with your skills, right? You've talked recently about making some some storyboards, or picture stories, with with steps for certain cleaning tasks or things like that. So getting a little bit more creative with with some of those those tools is something that you're interested in doing at this point. Yeah. Okay,
Greta Harrison:so mica, you are such a wonderful positive example of using social media for good, you've built such a strong social media circle of support around you. Can you share your thoughts about social media? Maybe some tips and suggestions because you've done a great job?
Micah Fialka-Feldman:Yeah, I, it's good to like, post things on Facebook, when I when I like posting on Facebook about like, update, so sharing my feelings or thoughts about my thoughts of how day is going, or how my evening and how things are going. And, and people like to have really like, following me and reading everything I post and, and, and I'm yeah, you share links to right. Yeah, and I Yeah, and I and I share links from other friends and other people and, and I'm trying to like learn how to how to take breaks from social media to have like very temporary to go to bed and I'm trying to learn that one of my one of my goes to taking breaks from from like my phone and and other things.
Greta Harrison:Well, that is important. You can't do it 24 hours a day. And I and I want to throw out there that for me as an observer. What I like about your social media presence is you have built a good number of friends on Facebook but it's all from a relationship standpoint you're not out there post you know posting a picture of yourself every single day you're not out there just trying to get you know X number of followers to have followers. Your your friends are there because of relationships. That's what you're trying to build. Right? Yeah. And and I love that every time you post something good or maybe something that's not so good. This the the genuine love and caring of people comes out and I think it's wonderful. It I love what you just said about taking a break from social media. And that's very important. So I'm glad that you know that you can't live on there 24 hours a day. And you can only take certain things seriously, right? You can't leave everything you see. And you can't take everything you see seriously, right? Yeah. All right. So let's, let's add one more tidbit that just came up in our organic discussion here about things that help you when you're independent. And you just mentioned something that helps you around the house that you just got what is that? Let's take
Micah Fialka-Feldman:it take it take a walk back that will clean the whole house.
Katherine Sanderson:be wonderful. The floors though, right? Yeah. Yeah, you've got these beautiful hardwood floors all through your house. And it's a lot to sweep every day. Yeah. Yeah. The robo vacuum is gonna do that work for you.
Greta Harrison:And you like that? So you'd like the robo vacuum? Yeah,
Micah Fialka-Feldman:I'm gonna try it out later on today, but yeah.
Katherine Sanderson:Brand new tool. Yeah. Brand
Greta Harrison:new toy, too, right. Oh, yeah. The tool and a toy? I'm sure. Right. Yeah. Okay, so do you have any advice for people with intellectual disabilities who want to be independent, when they are in their 20s? Because you were independent in your 20s? Or was Yeah, so think about that? What What advice do you have for the people behind you who want to be independent advice for the young adults, but also their families for both?
Micah Fialka-Feldman:I think making sure they have good circles and good parents and good people that help them and surround them and asking them if they want to move right at their parents house, or if they want to move to a nice data city, or make sure that they have a good job and good people to to like to like to, like help them.
Katherine Sanderson:And you think to about people that don't necessarily have parents that are really capable of, of supporting people to move out on their own? Yeah. You said to me earlier, just encouraging people to really use their voice and to know, to know that more is possible and to really advocate and find people around them to help them advocate for what is gonna work best in their lives. Right. Yeah.
Micah Fialka-Feldman:Yeah. And, and like, and like know, that, like people with disabilities, it's hard to sometimes have a district that there's like, lots of paperwork, and lots of things that you have to do as a person with a disability and, and website. And just like making sure that you have a voice when when, like you go to like, when you go to a doctor's appointment and stuff.
Greta Harrison:Very important. Very important. Thank you for that feedback. Micah. That's, that's excellent. Catherine, can you share with us a sweet story that you have either working with mica or of mica?
Katherine Sanderson:Yeah, I guess I am thinking about last summer, when we were able to go to the Syracuse community choir concert together. That's the Community Choir is a long standing local organization that's actually kind of based right here in this neighborhood and mica, you've sung with them a little bit in the past. Yeah. And I actually sang with them when I was a little girl long time ago. And haven't been to a concert and a long time ago, of course, they haven't had in person concerts for a while. But this was an outdoor one last summer. And anyway, Mike a put that on my radar and really kept reminding me about about it. And then that meant that we were able to go together and we went with my little boy who's four and my mom who mica knows as well and and then just the amount of people in the audience that knew you and that you knew and how wonderful it was to see you reconnecting with people that you hadn't seen in quite some time. That was really sweet. And the music was beautiful. And there was I remember the Ukrainian choir were too. That was a really sweet night.
Greta Harrison:Ah, I can vision that right now. And also everybody knows knowing mica I can I can see that too. Mica Can you think of a sweet story?
Micah Fialka-Feldman:Yeah, I yeah, I I have one. I like this. Like, just like it was, it's a steroid, but it's like, during, during, like when I had when I had like when I had like got when I had kidney stones. And I was mean asked for going to King back then it was the first doctor when you read this. Here's making me like overwhelmed because he like, he like was like a very like, he like used words and like, and I think his language for wasn't like first first like first like first first like first. First like Huizenga was had done just damn timber. And then we went to him and it was good. And then a couple of months later, I guess. And they will just change a dragon. Like, when to have the procedure. And then Katherine helped me find like a new king doctor that was that has been like great and, and I was just very glad that I was able to find I was able to find that good new, new like, doctor.
Greta Harrison:So you're talking about how ash and Catherine both helped you through that, that time when you were uncertain of what was going on. And they helped you speed up the process and they helped you understand the doctor more right. And deal with the doctor to well, that. Well, Catherine, I hope that makes you feel good to know that you're appreciated like that. I think that's sweet. Now, are there any funny stories that either of you have?
Katherine Sanderson:funny stories? I mean, we've definitely made each other laugh a fair amount. Yeah,
Micah Fialka-Feldman:we have. Like she, she like helped me write a great note. Right. Right. We found my roommate moved out. It was great. Not that I gave her. And she helped me. Like a great note that Yeah.
Katherine Sanderson:Was that funny, though?
Micah Fialka-Feldman:Funny. That
Greta Harrison:was sweet. That was right. That was sweet. Okay. Okay.
Katherine Sanderson:So at some point on Tuesday, I guess Mike, uh, took the garbage out of the kitchen. And then when I came back yesterday, I picked you up after work, right? We met at the edge of the campus. Yeah, drove back here to spend a few hours working together. And we opened the door downstairs. And I said, Oh, my God, what is that smell? Like? I said, Oh, God, I don't know what is that? And then we came up the stairs and opened the door. And oops, there was the trash bags. And you said, Oh, my bed and we laughed and open the windows and lit a candle. Right? Yeah, yeah.
Greta Harrison:Okay. That's, that is cute. That is funny. I still remember when I asked you that question about Tori. And when I asked you what was sweet, your answer was going running with her and then getting hot chocolate. And I just I still have that memory on a cold day going running and getting hot chocolate. And then for being funny. I remember her saying something about getting out of the car with you and in you not understanding about how she meant to get out of the car or something. And the way you guys just talked with each other was hilarious. So that that was cute. So is there is there anything that I have not asked you that you want to let people know or that you want to talk about? No,
Micah Fialka-Feldman:I can't think of any thing. Okay,
Greta Harrison:well, Micah, I hope you know how much I truly, truly do care about you and admire you. And I'm so grateful to call you friend, when when you send me a text or an email or call me on the phone, it makes my day. And I just want to thank you for sharing your life and your wisdom and your suggestions for everybody else so that we can hopefully help make a more inclusive world and have more people be independent like you are and interdependent. And Catherine Sanderson, I want to thank you for your time today to your your input was invaluable. And I just love how you make sure that there's nothing about us without us. Like you were saying you want the person within disability to definitely be part of the equation. And you want to work with people, not for people. And I just love everything about your vibe. I can definitely see why Mike is parents chose you a year ago and you seem to be a gift to each other. So thank you for sharing your time today. And I greatly appreciate you. Thank you.
Katherine Sanderson:Thank you Oh,
Micah Fialka-Feldman:thank you.
Greta Harrison:Thank you. Thank you for listening to Episode 16 of Born Fabulous Podcast's third season. I hope you enjoyed it and want to hear more short video clips from most episodes are available on our YouTube channel and on board fabulous podcast.com. In Episode 17, you will meet the parents of James and Kristen Zol. Both sets of parents talking together, they have a wealth of knowledge to share about their young adults who've been married for over five years now. James and Kristen live a happy independent life with proper supports in place. 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, who was the focus of season one episodes one through four. The music and voice are by Rachel fuller