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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Episode Transcript
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Greta Harrison (00:00):
Hello, my name is Greta Harrison. Welcome to
born fabulous podcast seasonthree, Episode 12. The theme of
this season is young adults withintellectual disabilities living
full lives of independence andinterdependence. You will hear
interviews with parents supportstaff and of course the young
adults with intellectualdisabilities. Please note these
(00:21):
interviews were done one to twoyears ago. achieving
independence is a complexjourney for many individuals and
families. There were many stopsand starts with various entities
when putting together seasonthree. Regardless, this content
is very relevant and we hope youwill find it helpful. This
episode is the fourth of fiveparts with Janice Falcon and
(00:42):
Richard Feldman. Though theyboth say they are retired,
Janice and Richard continued tobe sought after presenters and
speakers on issues relating todisability inclusion building
community advocacy and more.
Janice is also the author offour books and a poet. Richard
and Janice are the proud parentsof mica Fialkov Feldman, one of
the stars of the filmintelligent lives. Micah has an
(01:03):
intellectual disability. It wasa real treat to have this in
depth discussion with bothJanice and rich. Please enjoy
this short clip of love as apotion. The lyrics are by
Melissa Reggio, a young lady whohad Down syndrome and was the
focus of episodes one throughfour and Season One, the music
and voice are by Rachel fuller.
(01:42):
Now I've one thing I've noticedabout mica and I feel like I've
had the pleasure of getting toknow him. Actually, since 2019.
And he is not he does not holdback when it comes to reaching
out to others. He's He's good atmaking connections. He's good at
(02:04):
making friends. He's good atletting everybody know he's
looking for love all of thosethings. And I just wondered, as
a parent to parent, is thereanything that you can think of
in his past, when he grew upthat helped him? Or was he just
naturally like that? Or did heget more at ease as he got older
(02:24):
and grew into his skin? Becausehe's really good at that.
Janice Fialka (02:28):
He is. You know, I think there was some
intention, we stumbled on thatconcept of learning to reach out
to others, it's sort of what wewere talking about earlier is
that really from other peoplewith disabilities, who have
mentored us who are older,primarily people with
(02:51):
disabilities, sometimes thefamily members who are stressed
that interdependence is the, thedream, the goal, and that
require it as opposed toindependence, because most of
us, we're not independent, youknow, we need each other, we can
do things, you know, with someself empowerment, and yet that
(03:14):
is always done in inrelationship to others. So I
think it was practice. And Itell you almost hide, oh, no, so
embarrassed to share this. Butalmost out of desperation, when
Michael was younger, we reachedout to people, you know, when he
didn't get invited to birthdayparties, we didn't do this all
the time. But there were a fewtimes with people that we sort
(03:38):
of knew that. Okay, if you'renot good if mica can't get
invited to the party, then howabout if we take your daughter
and Micah and they go out for aspecial birthday ice cream cone
or something? So or we would Iremember talking to Michael,
when it was prom time, and hehad to get his his, you know,
(03:58):
tuxedo? And so I reached out toanother mother who had, you
know, been friendly towards ourfamily. And I said, How about
Micah and your son go and lookfor their tuxedos together. And
she said, That's a great idea,of course. And so we've learned
over and over that his life isincredibly rich in part because
(04:22):
of that. And then, unbeknownstto us, Michael was watching us
do that as well and became moreconfident. So I think that the
intentionality reaching out Ithink the other thing is that I
think we really on our good daysvalued what he could do. And
although we had highexpectations, we also
(04:45):
acknowledged Hey, Micah, that'sso cool of you. I don't know I
can't come up with an idea. Butor an example but you you tried,
as opposed to well, here's anexample Mike, it doesn't And
he's comfortable for us sharingthis, he does not read or write,
which always surprises people,because he uses technology so
(05:06):
well. So in the beginning, whenhe couldn't write out his
papers, we came up with the ideaof having him interview people
on a topic, audio, tape it andthen submit it to as his paper
or assignment fulfillment of hisassignment. And so the focus
was, what on what can you do?
And how do we lift that up, asopposed to can't do that you're
(05:29):
not good enough? You know, thatkind of thing? So it's a dance?
Yeah,
Richard Feldman (05:37):
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 comfortablereaching out is both something
deep within him that he's seen,that is also who he is, you
(05:57):
know, if he was around parentsthat 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. Andit's, you know, these are the
things that, you know, come offof us. But I think it's also the
(06:18):
intentionality. I think whatJanice said, which is really the
most important part is, we knewthat, Mike, we have a different
sense of security than a lot ofparents, and particularly the
generation before us, thegeneration before us believed
that they could save enoughmoney to take care of their kid
(06:38):
and make them safe for thefuture. And that security is
wrapping our arms around thekids, or young adults, or a
family member with a disability.
And then it was up to us asindividual nuclear families as
individual based on theindividualism of American
culture, to hug and holdsecurity that way. We believed
(07:01):
from the very getgo thatsecurity is based on the
relationships you have withother human beings, and the
building of community. So whenJanice reached out to Michael's
mother about going to rent atuxedo, whether it's consciously
thinking about it or not, it'sin our blood to say, this is how
(07:22):
we create community. And this ishow they change, not just how
Mikey gets tuxedo, but they willchange because they will have
this interaction. And to thisday, that family is one of the
most, they don't even live nearus. But will there's a
relationship with mica, andthere's the sun. And those
stories have gone on. So it'sabout community, it's about
(07:44):
interdependence. And and it's,it's, it's how did the community
change? Because if it's not onyour radar, you don't think
about it. I mean, I didn't thinkabout disability stuff until
Mike really became was disabled,and was entered introduces to a
whole new world. Having
Janice Fialka (08:04):
said all that, it's still hard. And I think
that's so important. It's notlike, oh, we have a problem.
Let's ask people, you know,there still is that sense of
cautiousness? So I think there'sphases to our being able to
reach out, you know, first weknow that there's something
going on, then we sort ofrealize we need some support,
(08:26):
and then we don't do anythingand 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 ourblood. But it also is, it's it's
hard, you know, when Mike neededopen heart surgery, like I said
to the mom, you're gonna need acircle of support. Oh, I don't
(08:48):
know, my God. And you know, itwas an eye, you know, with his
nudging. I did. I broughttogether eight women friends,
and we had a conversation and wetalked about courage and all
that, and they were very, veryhelpful. So I wanted to mention
that as well. I love that he
Greta Harrison (09:04):
said that to you. And it was true. And it's
true. And and while they're inschool, especially when you're
trying to make sure they have isas inclusive and education as
possible. I think parents needcircles of support then to I
mean, the students need them butthe parents need them to Yes,
gotta be around people who getit. Yes, absolutely. You gotta
(09:28):
have your you gotta have youryards and they don't always have
to be is they can be whatevergender but you've got to have
that circle who gets it? Yeah,I'm glad you brought that up.
Yeah. And his heart. His heartscare was quite something. But
again, that's something elsemica does well as he keeps track
of his health now, you know, I'msaying we're talking about him.
But we're going to be talking toMichael directly. I don't want
(09:50):
you to think we're not going towe are going to talk to Micah
directly, but he's veryconscious of his health and he's
good about exercising and eatingright and that's That's great.
So let's move on to independenceinto independence. What are some
of the biggest rewards you havefrom this whole experience? Hmm,
(10:11):
great
Janice Fialka (10:11):
question. I think when I mean, to be fulfilled,
the sense of being able tocontribute to society or to a
friendship or to relationship isat least an aspect to living a
(10:33):
quantum quality life. So when Iremember once mica said, a
teacher came up to him afterhearing him speak, and she
taught in early childhood. Andshe said, Micah, after hearing
your story, I realized that Ihave to go back and tell the
families that I'm working withand the kids were like, you
(10:55):
know, third, third grade, maybesecond grade, and I have to go
back and tell the talk to thefamilies in a different way.
I've been sort of limiting whatI thought was possible for their
kids, and you've opened up thatdoor for me, you give me hope.
So my God calls me up, becauseit's up and says, Mom, you know
(11:17):
what, I gave a teacher hopetoday. So knowing that he can
contribute something, everysingle person can, you know,
whatever it might be, even oneof my close friends who didn't
speak, was pretty much unable tomove at all the limits, people
(11:39):
would see Scott as a camp kid,what could he do, but his peers
in high school would come visitScott, and be with him and get
what they called a Scott moment,which was to settle their
nerves, and to be still and toyou sort of meditate. So each
(12:00):
person has gifts is folks havetaught us from the Toronto Jack
pairpoint Marcia forest, Lindacalm, everybody has a gift. And
so, you know, a long way to sayI think being able to contribute
to have your gifts acknowledged,that has given us great joy.
Rich, what about you, many?
Richard Feldman (12:23):
I think how it's changed, I'm thinking about
how it's changed us. And it'sjoy is an interesting word. But
in many ways, we'll never seethe world or people in the way
that we saw them before. Andpart of our humanity and are
(12:47):
growing as human beings, is, youknow, when people use the word
inclusion, it sounds like you'rejust opening a door and throwing
them in the house andeverybody's together or
something. But But inclusionreally means you have the
deepest respect for every humanbeings ability to reach their
potential, whatever that is. Andthat means shedding the glasses
(13:09):
of what success is shedding theglasses of what normal is
shedding the glasses of, ofableism of racism, gender of
sexism, all that stuff, right? Imean, you know, so we see when
we see people outside we have abetter chance a better tendency
(13:31):
to to be open and listen ratherthan judge and so you know, so
Mike his gift is not only beenthis this amazing journey, but
it's it's a journey that hastransformed us as parents and me
as a dad and and he's a teacher.
And to know that you yourteachers are not these
(13:58):
professors that write papers,but the teacher is the person
who's walking in the street orrolling in, in their chair is a
pretty amazing gift.
Janice Fialka (14:11):
And you know, as I'm listening I'm also really
aware that we need a wholesegment on Emma our daughter,
because so much of who Micah is,and actually who Emma has been
who Mike is, has been the roleif you will, the relationship
with his his younger sister Emmaby four years. So there's a lot
(14:36):
of joy in watching how they haveevolved over time she now was
for eight years she was ateacher in Boston was second
graders doing full inclusion.
Many of you saw her if you watchthe film intelligent lives, and
now she's a principal in anelement for an elementary school
in Boston as well. So the joy ofseeing how she is challenged
(14:57):
does I mean, siblings are reallyimportant to helping us be
better at knowing how to be withMicah. So I really want to lift
up all that she has taught usand the joys, the immense joys
that she's given us. I do have aspecific story that came to
(15:19):
mind. You know, when Mike hadchallenged the university here
in Michigan, because theywouldn't allow him to move into
the dorm. He tried all differentways to get them to change their
minds. And eventually he endedup suing the university. That's
a very long story, which you canread a bit about in our book.
(15:42):
He, the judge who ruled infavor, Judge Dugan, who ruled in
favor of mica is incrediblycritical, critically important
to his life and our lives andthe lives of so many other young
people. So 10 years after hemade that important ruling for
mica after Michael moved in thedorm, we were able to reconnect
(16:04):
with the judge. And he had noidea what had happened to this
kid. He said, you know, that heruled that mica could live in
the dorm. So we met with his hisfamily, his neighbors, and we
showed the film intelligentlives. And we were able to thank
him for the decision he made.
(16:28):
And also thank the lawyer whowrote the the brief, I think
it's called, What a joy that wasat night. We never expected
that, you know, it's a longstory how that happened. But I
think we get the the ability totalk about the transformations
(16:48):
that have occurred, really, iswhat when I can't sleep in the
middle of the night, I have toremember those stories as well.
They're sort of like the pillowthat catches my weary worrying
head as well. So yeah,
Richard Feldman (17:04):
in that same spirit, Emma just sent us a
picture of the young woman whois in the film. Yeah, young
girl, young girl, who's in thefilm, reading. And it
Janice Fialka (17:18):
just to set the stage. So those of the folks who
have seen intelligent livesEmma's teaching, second grade,
and Qivana, who is the Who isthe girl who has Down Syndrome
has really testing Emma, andit's captured in the film very
well, because she kept sayingno, no, no to to Emma. And Emma
has stayed in her life and herfamily's life supporting them to
(17:41):
create a circle as well.
Richard Feldman (17:43):
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 veryfalse sense of time, when you're
sort of on this track of go toschool, go to college, go to
trade, school, get a job, make afamily. That's not how the world
(18:05):
really, really functions. That'snot how most humans really,
really function. It's just acultural creation that is
destroyed human beings. And micahas taught us a sense of time,
just like Emma uses this exampleof Qivana in second grade, would
not be mica at 30. You know, butnow she can see because of what
(18:28):
she did in second grade Qivanais now in high school, and can
read me
Janice Fialka (18:33):
just just got a video out of her reading. And
you know, it's, it takes time.
And that's, and that's why weneed each other to stories
because I reach out to parentswhose kids are older saying, oh
my gosh, how did you go throughthis? And they'll Okay, let's
take this little step here.
Let's take this little stephere.
Greta Harrison (18:54):
You've touched on so many things there. First
of all, Emma, who is quite arock star. And and we've already
talked about it a little bit inthis interview, how she started
helping other educators when thepandemic first started. She is
quite a rock star. When you weretalking about helping that
family those eight familiestogether and you said Emma was
(19:16):
part of that my first thoughtwas, well, they had an all star
team. They're helping them theyhad both of you and Emma, that's
that's great. And Michael wasthere too. Oh, yeah, it
Richard Feldman (19:27):
was our family was a family training with the
four that I did
Greta Harrison (19:31):
not know Micah was there. Were there. That's
great, because you guys are notalways in the same place. So
that's, that's wonderful toknow. But you also brought up
the fact of siblings have extralayers and you probably have a
more eloquent way of saying thisbut extra layers of empathy,
(19:53):
extra layers of character, extralayers of early wise experience
and others. There are and agewould not have. And I've seen
that time and time and timeagain. And I think that's
definitely true with with Emma,for sure.
Janice Fialka (20:12):
Yes. And all the research really points to that.
Not that we need that. But youknow, there is the scientific
research that definitely,because a lot of times people,
you know, I have amisunderstanding If Emma though,
one of the things that shealways says when she speaks,
especially when she was younger,is to give siblings the value to
(20:32):
support the siblings to have allthe range of feelings as well.
Embarrassed, frustrated, angry,I don't want that. You know, I
think one of Emma's workshopsthat she did was called the
title was, I can't live withouthim, and I can't live with him,
right. So she wanted a placewhere she could talk about, you
(20:58):
know, I don't want a brotherwith a disability. And that in
some ways isn't all thatuncommon. And sibling issues. I
don't want a brother who'swhatever, you know. So I think
that's one thing she alwayswants to say to other parents,
let us let siblings talk aboutwhat their feelings are, as
well. So and you know, shedoesn't didn't always want to be
(21:20):
around him. And rather thanpressure hit her to you better
love your brother. I mean, wewanted to do that and say that
we hoped for it. But we wouldsay give yourself some time,
Emma, maybe right now, beingwith mica isn't always the best
thing. And again, that's more alittle, maybe more extreme
around differences, but not allthat unusual and sibling
(21:43):
relationships.
Richard Feldman (21:45):
I'll never forget when she got a hold of
this book called the siblingslam book, slam notebook. By
some folks out in Myers Yeah,damn, Don, Don, Don, my God.
Myers. Yeah. And it was thefirst book that you could give
to a friend. Because she feltcomfortable. And she had
(22:11):
actually written some stuff init, I think. And because she
didn't want her friends to comeover the house when you know,
it's certain time in middleschool or something like that.
And the other part of theingredient was the empathy. You
call it empathy. I don't knowwhat it is. Janice has an
uncanny ability to listen, andwould listen to Emma talk at
(22:34):
night, on and on and on aboutanything and everything. It
might not just been about herbrother. So there's a listening
part of parenting that we knowis so so important. And last,
the last thing that I want tosay is, and this is a challenge,
it's not about being haughty oranything like that. But the best
gift, one of the best gifts wecan give to our siblings is a
(22:57):
circle of support, andfriendships and community.
Because otherwise, it falls onthem for that relationship. And
while it is by choice and bylove, there's just so much
choice in love every siblingwants about another sibling, you
know, and I think the beliefthat parents can have the
security of hugging and not thesecurity of community building
(23:21):
is really needs to be soulsearched and it's risky, but
that risk will be the benefit ofthe doubt my siblings always
say, Just be honest with yourkid. Just tell them the truth,
you know, you know? And and thatopen conversation has been very
(23:42):
important in our family.
Greta Harrison (23:44):
Thank you for listening to Episode 12 of
boring Federalist podcast thirdseason. I hope you enjoyed it
and want to hear more. Someshort video clips from most
episodes are available on ourYouTube channel and unborn
fabulous podcast.com. In Episode13, Janice and Rich will
continue their discussion on thesibling perspective, sharing an
(24:05):
inspiring quote from Emma. Theywill also touch on letting go
fighting hard and loving hard,sharing resources and giving
some advice please follow andlike us on Facebook, Instagram
and Twitter. If you enjoyed thisepisode, I'd be honored if you
would leave a review whereveryou heard this podcast. Now
please enjoy this clip of loveas opposed motion. The lyrics
(24:27):
are by Melissa regio, a younglady who had Down syndrome and
what's the focus of episodes onethrough four in season one. The
music and voice are by Rachelfuller
Hello, my name is Greta Harrison. Welcome to
born fabulous podcast seasonthree, Episode 12. The theme of
this season is young adults withintellectual disabilities living
full lives of independence andinterdependence. You will hear
interviews with parents supportstaff and of course the young
adults with intellectualdisabilities. Please note these
(00:21):
interviews were done one to twoyears ago. achieving
independence is a complexjourney for many individuals and
families. There were many stopsand starts with various entities
when putting together seasonthree. Regardless, this content
is very relevant and we hope youwill find it helpful. This
episode is the fourth of fiveparts with Janice Falcon and
(00:42):
Richard Feldman. Though theyboth say they are retired,
Janice and Richard continued tobe sought after presenters and
speakers on issues relating todisability inclusion building
community advocacy and more.
Janice is also the author offour books and a poet. Richard
and Janice are the proud parentsof mica Fialkov Feldman, one of
the stars of the filmintelligent lives. Micah has an
(01:03):
intellectual disability. It wasa real treat to have this in
depth discussion with bothJanice and rich. Please enjoy
this short clip of love as apotion. The lyrics are by
Melissa Reggio, a young lady whohad Down syndrome and was the
focus of episodes one throughfour and Season One, the music
and voice are by Rachel fuller.
(01:42):
Now I've one thing I've noticedabout mica and I feel like I've
had the pleasure of getting toknow him. Actually, since 2019.
And he is not he does not holdback when it comes to reaching
out to others. He's He's good atmaking connections. He's good at
(02:04):
making friends. He's good atletting everybody know he's
looking for love all of thosethings. And I just wondered, as
a parent to parent, is thereanything that you can think of
in his past, when he grew upthat helped him? Or was he just
naturally like that? Or did heget more at ease as he got older
(02:24):
and grew into his skin? Becausehe's really good at that.
Janice Fialka (02:28):
He is. You know, I think there was some
intention, we stumbled on thatconcept of learning to reach out
to others, it's sort of what wewere talking about earlier is
that really from other peoplewith disabilities, who have
mentored us who are older,primarily people with
(02:51):
disabilities, sometimes thefamily members who are stressed
that interdependence is the, thedream, the goal, and that
require it as opposed toindependence, because most of
us, we're not independent, youknow, we need each other, we can
do things, you know, with someself empowerment, and yet that
(03:14):
is always done in inrelationship to others. So I
think it was practice. And Itell you almost hide, oh, no, so
embarrassed to share this. Butalmost out of desperation, when
Michael was younger, we reachedout to people, you know, when he
didn't get invited to birthdayparties, we didn't do this all
the time. But there were a fewtimes with people that we sort
(03:38):
of knew that. Okay, if you'renot good if mica can't get
invited to the party, then howabout if we take your daughter
and Micah and they go out for aspecial birthday ice cream cone
or something? So or we would Iremember talking to Michael,
when it was prom time, and hehad to get his his, you know,
(03:58):
tuxedo? And so I reached out toanother mother who had, you
know, been friendly towards ourfamily. And I said, How about
Micah and your son go and lookfor their tuxedos together. And
she said, That's a great idea,of course. And so we've learned
over and over that his life isincredibly rich in part because
(04:22):
of that. And then, unbeknownstto us, Michael was watching us
do that as well and became moreconfident. So I think that the
intentionality reaching out Ithink the other thing is that I
think we really on our good daysvalued what he could do. And
although we had highexpectations, we also
(04:45):
acknowledged Hey, Micah, that'sso cool of you. I don't know I
can't come up with an idea. Butor an example but you you tried,
as opposed to well, here's anexample Mike, it doesn't And
he's comfortable for us sharingthis, he does not read or write,
which always surprises people,because he uses technology so
(05:06):
well. So in the beginning, whenhe couldn't write out his
papers, we came up with the ideaof having him interview people
on a topic, audio, tape it andthen submit it to as his paper
or assignment fulfillment of hisassignment. And so the focus
was, what on what can you do?
And how do we lift that up, asopposed to can't do that you're
(05:29):
not good enough? You know, thatkind of thing? So it's a dance?
Yeah,
Richard Feldman (05:37):
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 comfortablereaching out is both something
deep within him that he's seen,that is also who he is, you
(05:57):
know, if he was around parentsthat 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. Andit's, you know, these are the
things that, you know, come offof us. But I think it's also the
(06:18):
intentionality. I think whatJanice said, which is really the
most important part is, we knewthat, Mike, we have a different
sense of security than a lot ofparents, and particularly the
generation before us, thegeneration before us believed
that they could save enoughmoney to take care of their kid
(06:38):
and make them safe for thefuture. And that security is
wrapping our arms around thekids, or young adults, or a
family member with a disability.
And then it was up to us asindividual nuclear families as
individual based on theindividualism of American
culture, to hug and holdsecurity that way. We believed
(07:01):
from the very getgo thatsecurity is based on the
relationships you have withother human beings, and the
building of community. So whenJanice reached out to Michael's
mother about going to rent atuxedo, whether it's consciously
thinking about it or not, it'sin our blood to say, this is how
(07:22):
we create community. And this ishow they change, not just how
Mikey gets tuxedo, but they willchange because they will have
this interaction. And to thisday, that family is one of the
most, they don't even live nearus. But will there's a
relationship with mica, andthere's the sun. And those
stories have gone on. So it'sabout community, it's about
(07:44):
interdependence. And and it's,it's, it's how did the community
change? Because if it's not onyour radar, you don't think
about it. I mean, I didn't thinkabout disability stuff until
Mike really became was disabled,and was entered introduces to a
whole new world. Having
Janice Fialka (08:04):
said all that, it's still hard. And I think
that's so important. It's notlike, oh, we have a problem.
Let's ask people, you know,there still is that sense of
cautiousness? So I think there'sphases to our being able to
reach out, you know, first weknow that there's something
going on, then we sort ofrealize we need some support,
(08:26):
and then we don't do anythingand 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 ourblood. But it also is, it's it's
hard, you know, when Mike neededopen heart surgery, like I said
to the mom, you're gonna need acircle of support. Oh, I don't
(08:48):
know, my God. And you know, itwas an eye, you know, with his
nudging. I did. I broughttogether eight women friends,
and we had a conversation and wetalked about courage and all
that, and they were very, veryhelpful. So I wanted to mention
that as well. I love that he
Greta Harrison (09:04):
said that to you. And it was true. And it's
true. And and while they're inschool, especially when you're
trying to make sure they have isas inclusive and education as
possible. I think parents needcircles of support then to I
mean, the students need them butthe parents need them to Yes,
gotta be around people who getit. Yes, absolutely. You gotta
(09:28):
have your you gotta have youryards and they don't always have
to be is they can be whatevergender but you've got to have
that circle who gets it? Yeah,I'm glad you brought that up.
Yeah. And his heart. His heartscare was quite something. But
again, that's something elsemica does well as he keeps track
of his health now, you know, I'msaying we're talking about him.
But we're going to be talking toMichael directly. I don't want
(09:50):
you to think we're not going towe are going to talk to Micah
directly, but he's veryconscious of his health and he's
good about exercising and eatingright and that's That's great.
So let's move on to independenceinto independence. What are some
of the biggest rewards you havefrom this whole experience? Hmm,
(10:11):
great
Janice Fialka (10:11):
question. I think when I mean, to be fulfilled,
the sense of being able tocontribute to society or to a
friendship or to relationship isat least an aspect to living a
(10:33):
quantum quality life. So when Iremember once mica said, a
teacher came up to him afterhearing him speak, and she
taught in early childhood. Andshe said, Micah, after hearing
your story, I realized that Ihave to go back and tell the
families that I'm working withand the kids were like, you
(10:55):
know, third, third grade, maybesecond grade, and I have to go
back and tell the talk to thefamilies in a different way.
I've been sort of limiting whatI thought was possible for their
kids, and you've opened up thatdoor for me, you give me hope.
So my God calls me up, becauseit's up and says, Mom, you know
(11:17):
what, I gave a teacher hopetoday. So knowing that he can
contribute something, everysingle person can, you know,
whatever it might be, even oneof my close friends who didn't
speak, was pretty much unable tomove at all the limits, people
(11:39):
would see Scott as a camp kid,what could he do, but his peers
in high school would come visitScott, and be with him and get
what they called a Scott moment,which was to settle their
nerves, and to be still and toyou sort of meditate. So each
(12:00):
person has gifts is folks havetaught us from the Toronto Jack
pairpoint Marcia forest, Lindacalm, everybody has a gift. And
so, you know, a long way to sayI think being able to contribute
to have your gifts acknowledged,that has given us great joy.
Rich, what about you, many?
Richard Feldman (12:23):
I think how it's changed, I'm thinking about
how it's changed us. And it'sjoy is an interesting word. But
in many ways, we'll never seethe world or people in the way
that we saw them before. Andpart of our humanity and are
(12:47):
growing as human beings, is, youknow, when people use the word
inclusion, it sounds like you'rejust opening a door and throwing
them in the house andeverybody's together or
something. But But inclusionreally means you have the
deepest respect for every humanbeings ability to reach their
potential, whatever that is. Andthat means shedding the glasses
(13:09):
of what success is shedding theglasses of what normal is
shedding the glasses of, ofableism of racism, gender of
sexism, all that stuff, right? Imean, you know, so we see when
we see people outside we have abetter chance a better tendency
(13:31):
to to be open and listen ratherthan judge and so you know, so
Mike his gift is not only beenthis this amazing journey, but
it's it's a journey that hastransformed us as parents and me
as a dad and and he's a teacher.
And to know that you yourteachers are not these
(13:58):
professors that write papers,but the teacher is the person
who's walking in the street orrolling in, in their chair is a
pretty amazing gift.
Janice Fialka (14:11):
And you know, as I'm listening I'm also really
aware that we need a wholesegment on Emma our daughter,
because so much of who Micah is,and actually who Emma has been
who Mike is, has been the roleif you will, the relationship
with his his younger sister Emmaby four years. So there's a lot
(14:36):
of joy in watching how they haveevolved over time she now was
for eight years she was ateacher in Boston was second
graders doing full inclusion.
Many of you saw her if you watchthe film intelligent lives, and
now she's a principal in anelement for an elementary school
in Boston as well. So the joy ofseeing how she is challenged
(14:57):
does I mean, siblings are reallyimportant to helping us be
better at knowing how to be withMicah. So I really want to lift
up all that she has taught usand the joys, the immense joys
that she's given us. I do have aspecific story that came to
(15:19):
mind. You know, when Mike hadchallenged the university here
in Michigan, because theywouldn't allow him to move into
the dorm. He tried all differentways to get them to change their
minds. And eventually he endedup suing the university. That's
a very long story, which you canread a bit about in our book.
(15:42):
He, the judge who ruled infavor, Judge Dugan, who ruled in
favor of mica is incrediblycritical, critically important
to his life and our lives andthe lives of so many other young
people. So 10 years after hemade that important ruling for
mica after Michael moved in thedorm, we were able to reconnect
(16:04):
with the judge. And he had noidea what had happened to this
kid. He said, you know, that heruled that mica could live in
the dorm. So we met with his hisfamily, his neighbors, and we
showed the film intelligentlives. And we were able to thank
him for the decision he made.
(16:28):
And also thank the lawyer whowrote the the brief, I think
it's called, What a joy that wasat night. We never expected
that, you know, it's a longstory how that happened. But I
think we get the the ability totalk about the transformations
(16:48):
that have occurred, really, iswhat when I can't sleep in the
middle of the night, I have toremember those stories as well.
They're sort of like the pillowthat catches my weary worrying
head as well. So yeah,
Richard Feldman (17:04):
in that same spirit, Emma just sent us a
picture of the young woman whois in the film. Yeah, young
girl, young girl, who's in thefilm, reading. And it
Janice Fialka (17:18):
just to set the stage. So those of the folks who
have seen intelligent livesEmma's teaching, second grade,
and Qivana, who is the Who isthe girl who has Down Syndrome
has really testing Emma, andit's captured in the film very
well, because she kept sayingno, no, no to to Emma. And Emma
has stayed in her life and herfamily's life supporting them to
(17:41):
create a circle as well.
Richard Feldman (17:43):
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 veryfalse sense of time, when you're
sort of on this track of go toschool, go to college, go to
trade, school, get a job, make afamily. That's not how the world
(18:05):
really, really functions. That'snot how most humans really,
really function. It's just acultural creation that is
destroyed human beings. And micahas taught us a sense of time,
just like Emma uses this exampleof Qivana in second grade, would
not be mica at 30. You know, butnow she can see because of what
(18:28):
she did in second grade Qivanais now in high school, and can
read me
Janice Fialka (18:33):
just just got a video out of her reading. And
you know, it's, it takes time.
And that's, and that's why weneed each other to stories
because I reach out to parentswhose kids are older saying, oh
my gosh, how did you go throughthis? And they'll Okay, let's
take this little step here.
Let's take this little stephere.
Greta Harrison (18:54):
You've touched on so many things there. First
of all, Emma, who is quite arock star. And and we've already
talked about it a little bit inthis interview, how she started
helping other educators when thepandemic first started. She is
quite a rock star. When you weretalking about helping that
family those eight familiestogether and you said Emma was
(19:16):
part of that my first thoughtwas, well, they had an all star
team. They're helping them theyhad both of you and Emma, that's
that's great. And Michael wasthere too. Oh, yeah, it
Richard Feldman (19:27):
was our family was a family training with the
four that I did
Greta Harrison (19:31):
not know Micah was there. Were there. That's
great, because you guys are notalways in the same place. So
that's, that's wonderful toknow. But you also brought up
the fact of siblings have extralayers and you probably have a
more eloquent way of saying thisbut extra layers of empathy,
(19:53):
extra layers of character, extralayers of early wise experience
and others. There are and agewould not have. And I've seen
that time and time and timeagain. And I think that's
definitely true with with Emma,for sure.
Janice Fialka (20:12):
Yes. And all the research really points to that.
Not that we need that. But youknow, there is the scientific
research that definitely,because a lot of times people,
you know, I have amisunderstanding If Emma though,
one of the things that shealways says when she speaks,
especially when she was younger,is to give siblings the value to
(20:32):
support the siblings to have allthe range of feelings as well.
Embarrassed, frustrated, angry,I don't want that. You know, I
think one of Emma's workshopsthat she did was called the
title was, I can't live withouthim, and I can't live with him,
right. So she wanted a placewhere she could talk about, you
(20:58):
know, I don't want a brotherwith a disability. And that in
some ways isn't all thatuncommon. And sibling issues. I
don't want a brother who'swhatever, you know. So I think
that's one thing she alwayswants to say to other parents,
let us let siblings talk aboutwhat their feelings are, as
well. So and you know, shedoesn't didn't always want to be
(21:20):
around him. And rather thanpressure hit her to you better
love your brother. I mean, wewanted to do that and say that
we hoped for it. But we wouldsay give yourself some time,
Emma, maybe right now, beingwith mica isn't always the best
thing. And again, that's more alittle, maybe more extreme
around differences, but not allthat unusual and sibling
(21:43):
relationships.
Richard Feldman (21:45):
I'll never forget when she got a hold of
this book called the siblingslam book, slam notebook. By
some folks out in Myers Yeah,damn, Don, Don, Don, my God.
Myers. Yeah. And it was thefirst book that you could give
to a friend. Because she feltcomfortable. And she had
(22:11):
actually written some stuff init, I think. And because she
didn't want her friends to comeover the house when you know,
it's certain time in middleschool or something like that.
And the other part of theingredient was the empathy. You
call it empathy. I don't knowwhat it is. Janice has an
uncanny ability to listen, andwould listen to Emma talk at
(22:34):
night, on and on and on aboutanything and everything. It
might not just been about herbrother. So there's a listening
part of parenting that we knowis so so important. And last,
the last thing that I want tosay is, and this is a challenge,
it's not about being haughty oranything like that. But the best
gift, one of the best gifts wecan give to our siblings is a
(22:57):
circle of support, andfriendships and community.
Because otherwise, it falls onthem for that relationship. And
while it is by choice and bylove, there's just so much
choice in love every siblingwants about another sibling, you
know, and I think the beliefthat parents can have the
security of hugging and not thesecurity of community building
(23:21):
is really needs to be soulsearched and it's risky, but
that risk will be the benefit ofthe doubt my siblings always
say, Just be honest with yourkid. Just tell them the truth,
you know, you know? And and thatopen conversation has been very
(23:42):
important in our family.
Greta Harrison (23:44):
Thank you for listening to Episode 12 of
boring Federalist podcast thirdseason. I hope you enjoyed it
and want to hear more. Someshort video clips from most
episodes are available on ourYouTube channel and unborn
fabulous podcast.com. In Episode13, Janice and Rich will
continue their discussion on thesibling perspective, sharing an
(24:05):
inspiring quote from Emma. Theywill also touch on letting go
fighting hard and loving hard,sharing resources and giving
some advice please follow andlike us on Facebook, Instagram
and Twitter. If you enjoyed thisepisode, I'd be honored if you
would leave a review whereveryou heard this podcast. Now
please enjoy this clip of loveas opposed motion. The lyrics
(24:27):
are by Melissa regio, a younglady who had Down syndrome and
what's the focus of episodes onethrough four in season one. The
music and voice are by Rachelfuller
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