Janice Fialka and Richard Feldman continue their discussion about the sibling perspective, sharing a very poignant quote by their daughter Emma. They also talk about fighting and loving hard, share many resources, give some advice, and sprinkle in more sweet stories. Their wisdom, advice, and experiences 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 and 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 13. 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
(00:22):
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 last of fiveparts with Janice V. Alka and
(00:42):
Richard Feldman. Though theyboth say they are retired,
Janice and Richard continue 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
(01:05):
intellectual disability. It wasa real treat to have this in
depth discussion with bothJanice and rich. Now please
enjoy this short clip of love asa potion. The lyrics are by
Melissa regio, 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
Unknown (01:32):
inside.
Show
Janice Fialka (02:06):
the phrase that I use maybe I already have with
you Greta is that it's and Ilearned this from another parent
is not about letting go. It'slearning how to hold on
differently. Because none of usever really totally let go.
Right? I mean, yeah, you know, Ijust have to share with you
Thank you Rich for the for thosethoughts, because it gets me to
(02:28):
an end. But I picked up thesibling slam book, which you now
still can get on, you know,through through whatever, by Don
Meyer. But there's an articlewhen my Alma spoke at a
conference and this was in shewas in high school. And I just
want to read a couple of thelines. This is Emma mica taught
(02:49):
me to accept people for who theyare, instead of what they can or
can't do. I've learned to askothers for help. I haven't I
have not read this in years. SoEmma's saying I've asked
everyone to ask others for help.
We tend to see it as a weakness.
But asking really buildscommunity. If I can model that,
(03:11):
then siblings will learn thatfrom me. This is so interesting
is Yeah, so So there she is, youknow, sharing that as well. So
Greta Harrison (03:20):
that's beautiful. And I'm glad you I'm
glad you read that because Idon't want listeners to think
that oh, she doesn't love herbrother. She loves her brother
very much. And they have a veryclose relationship. You were
just being honest about siblingfeelings that happen when people
are growing up. Yeah, I'm reallyglad glad you did that, then.
It's an honest, that's honest,honest,
Janice Fialka (03:42):
they have so much fun together. And now at this
age, you know, we're the onesthey tease. So they get together
and go, you know, they makejokes about their weird parents.
So absolutely. And they presenttogether too. So thank you for
lifting that up as well. Yes,
Greta Harrison (03:58):
they do. And for the listeners who don't know,
Mike has presented at Harvard.
Correct? Harvard or
Janice Fialka (04:07):
something? Yeah.
Brown University. And I think hedidn't present you know, it's,
it's hard to track all of that.
Greta Harrison (04:15):
I wish all the educators in the past could know
all the things that he's done.
That's, that's amazing. Now,what about we've talked about
the rewards, and let's talkabout some of the pitfalls.
You've talked a few times aboutworrying in the middle of the
night, which I think everyparent can really relate to. So
just touch on that briefly. Wedon't want it to be a big
(04:37):
downer, but what are some of thepitfalls
Richard Feldman (04:47):
that can't be irreverent about it and laugh
once in a while. So thanks forthat opportunity. It's easy to
say that it's all uncertain thefuture but not being able to
make it better is always in yourbelly. because you can't, and
you know it. So we're alwaysconvincing ourselves, we know
it. It hurts. It's painful, it'sscary. You want, you know,
(05:12):
parents want things to besmooth, you want to be able to
hug and say it's all bite,right? It doesn't the world
doesn't work that way. Andnobody works that way. So, you
know, as specific, the pain thathe has to go through finding a
roommate, every year, the pain,the when he doesn't have
anything to do on a Saturdaynight, the pain when we're
(05:35):
getting 10 or 10 Textingmessages in an hour of how are
you I'm Adam, you know, and he'salways having an amazing day.
And but he'll have some, youknow, so you know, in terms of
his voice, but so it's, I thinkit's what all parents go through
in many ways. It's all parentswant their kids to be fulfilled,
(05:55):
happy. And you want it all thetime. But you also know, that's
not how the world is. And itnever is, it never will be. And,
and that's why you need acircle, you need a companion, I
mean, a friend, a lover, a wife,a spouse, the husband, you know,
cousin, or you need people tovent, you know, to share, it's
(06:18):
just,
Janice Fialka (06:20):
yeah, you set it well to fall apart, you know, to
moments of despair of care. Wecan't stay stuck there. But, you
know, most of us, or at leastmany of us experience that it's
real, you know? Yeah,
Greta Harrison (06:38):
I think it's powerful for people to know that
a couple like you who've beenreally helping so many families
over a long period of time, thatyou still have the same concerns
that almost every parent has. Sothank you for being honest. Just
Richard Feldman (06:56):
to add to that, I mean, also the amount of times
we fight with each other. And weargue, and we don't do it so
nicely, sometimes, right? Imean, you know, but But you
mentioned the word love, I mean,a few times and the difference
between loving your spouse andliking them all the time we're
agreeing on how to deal withyoung adults with disabilities
(07:20):
is a challenge. You know, so
Janice Fialka (07:23):
at our 40th anniversary gathering, which was
still during COVID, we hadoutside with drumming, and, you
know, everybody was distanced.
And mme, I gave a little talk, Ithink, was it COVID? It doesn't
really matter anyway, it wouldbe for COVID. That's right. And
Ella gave a little talk, youknow, and Micah did as well. But
Emma said, you know, one thing Ilearned from my parents is that
(07:44):
they can fight hard and lovehard. And at first, you know, I
went, you know, but so manypeople came up and thanked me
because, you know, we're sort ofshy as a culture about, you
know, the, the challenging waysof being and so, you know, we've
had our ups and downs andvarious points, we've gone into
therapy to sort of have anotherperson there to figure out help
(08:06):
us negotiate all of that tensionas well. So I appreciate your
you're asking that question,because it doesn't pay to not be
honest.
Greta Harrison (08:19):
And I love that you fight hard and love hard,
because it's that second partthat that makes it keep going,
isn't it? Yes. I love that. Now,beyond your books, your movie,
the movie is intelligent lives.
And there's another film outthere through the same door, and
poems. Are there any specificresources that you want to steer
(08:40):
parents and self advocates tothat help foster their future
interdependence andindependence? Well,
Janice Fialka (08:50):
what probably for us, I mean, there's so many now.
Oh, my goodness. One of theprobably key communities has
been, you know, people go to thewebsite, inclusion.com, Jack
pairpoint Marcia forest, LindaKhan. Every year up through up
(09:11):
until COVID, there was theToronto summer institute that
brought people from around theworld together, where we learned
about circle of friends maps, welearned how you chat, you know,
overall, you cannot rely on thesystems where you don't talk. I
mean, you know, we stillwithdraw from them, but it's not
(09:32):
the systems this that I'm theagencies that are going to be
able to do it all and that's ahard lesson. So anyways, I think
now the tour of the title isMarcia forest. Inclusion
Institute. I don't remember theexact let inclusion.com
definitely is one of them. Oh,there's so many people. I think
(09:55):
one of the books that have beenreally important to our family
was Andrew Solomon's book, farfrom the tree, which he
interviewed families that hadchildren with disabilities all
at all kinds of differences.
Yeah, I mean, you know, I couldturn my head to, you know, these
(10:15):
these books here as well. Well,I
Richard Feldman (10:20):
was just gonna say, I think it's, there's so
many books now because of thedisability justice movement
that's emerged that are theyoung activists that are
involved in all the socialmovements now. And, and and
again, it's it's individualadvocacy is one framing, seeing
(10:41):
it as a social question fortransforming society is seeing
the relationship between our ourunderstanding as parents, that
it's not just creating a safeway for young people to grow.
But how does the world change?
So there are so many books, Imean, any parent that has never
read no pity, which is thehistory of the disability
(11:01):
movement in the United States,you know, was written gobs a
years ago, you know, is missingan under an opportunity. You
know, there's, I can't think ofall the books there's a book by
Naomi Ortiz, self care, selfcare, and there's, we can
provide them and there's there'spodcasts and, and advocacy
(11:22):
groups that parents need to takea little peek into as they're
going through. And it'sdifferent for all parents at
different stages of theirchild's or young person's
thinking and growth. Right.
Greta Harrison (11:40):
I will have a page for you all and Micah,
okay, in the season three, partof the podcasts on boring,
fabulous podcast.com. And so onthat page, I will have a list
that you all can send me ofresources, but I'm glad that you
discussed some of them. And Ijust want to make a pivot here
(12:02):
because it reminds me, the firstmentor I had was Stephen Lor
regio. He's the former CEO ofBarnes and Noble, and their
daughter, their daughter,Melissa, and when their daughter
Melissa was born in 1988, therewere not any books write about
people with disabilities, it isbecause of Melissa's birth. And
(12:24):
his aha moment that he startedmaking sure. And for all those
who don't know, pre pre Amazon,you know, we relied on
bookstores, real bookstores, andhe made sure that they had lots
1000s and 1000s of titles, theyhad to do disability. So fast
(12:44):
forward from that. And for thosewho want to know my conversation
with Steve of orange juice, andSeason One, they started out in
season one, because you remindme of that there's so many
resources out there now thereweren't then, but there are now
there's
Janice Fialka (13:01):
I do want to list up one book for for listeners to
LS Huang, w o n g. And I don'thave the title right in front of
me, it's downstairs, but it'sabout it's stories of people
with disabilities. So when weare ready as family members, we
need to read those storiesbecause they really are our
(13:22):
teachers. And she did abeautiful job of collecting
stories. And actually, there's awonderful new children's book
we've already Burgess 20 copies,called we move together
beautiful illustrations of everykind of person in the whole
world. And they also the authorsare from Toronto, and they also
(13:46):
have it available for people whoare hearing impaired or visually
impaired as well. So on and on,but wanted to lift up those and
forgive us for those that haveinfluenced us that we did lift
out, but we'll have it on thehardcopy yep,
Greta Harrison (14:01):
that's great.
Well, thank you. I appreciatethat. Now, what advice would you
have for parents coming upbehind you? I know you could
probably do a whole weekend ofadvice, but
Janice Fialka (14:14):
Well, I think we've woven so much of sort of
our principles, you know, aswell. I mean, I have a quote
right here attached to mycomputer that says To hell with
bootstraps, for surely we needto swoop in on most days and
save each other. So you know,knowing that, yeah, as we've
(14:36):
said, over and over, we're notalone. I do think humor is
really important. Being able tolaugh, be silly, make inside
family jokes that maybe younever would share with anybody
else. But they work for youknow, for your family or they
work for our family. GreatExpectations. and not to
(15:01):
necessarily accept what peopletell you is the right way as in
school settings, but to x itrather than accept ACC PT,
expect more. You know, those area few that highlight in addition
to everything we've talked aboutin your wonderful listening.
Greta Harrison (15:21):
And Rich, I can see your wheels.
Richard Feldman (15:24):
There's a Native American conversation
that starts with, respect us orexpect us and they expecting
means that we're going to be atyour doorsteps knocking down the
walls for change. And and Iguess the only advice is to find
the support where you can askthe questions you need to ask, I
(15:47):
don't know, I really don't Imean, I think we've shared
Janice Fialka (15:50):
you're in it for the long run, you know, we're,
we're, we're in our 70s. Okay.
And Micah is in his late 30s,mid 30s. I mean, this is a long
road. And so you, you gotta takecare of yourself in community
with others, and really havehave fun times with the family,
(16:10):
you know, everything that I'd befalling apart, but maybe you go
trampoline, you know, or you gofor a hike or a swim or you go
eat ice cream, you know, cherishthose little moments, because
those are the things that getyou to the next place. Because
life can be so heavy. And it isheavy. And it's also got to be
(16:33):
filled with dancer ice cream, ornoodles, or whatever it might be
that brings you that joy andthat togetherness. Easy to say,
but it's true. I think it'sdefinitely
Richard Feldman (16:46):
true ice cream is the best, there's no
question. I think two things interms of advice. One is we make
this journey by walking androlling. And there is no
destination, except what wecreate. And it just got to be
filled with the belief thathuman beings can be much more
than we are. And that ourchildren and our family members
(17:10):
can change in this process. Evenwith all the disappointments
we'll face and all the obstaclesthat human beings can be
weighing and seeing what'spossible yet, but each of your
parents who are watching this,and professionals, if they have
that kind of respect for thepeople they're working with, and
they're relating to and thentheir own families will make
well into the worlds a littlelittle more forward. And I
Greta Harrison (17:33):
hope that there are a lot of community members
listening to because that's howinclusion really happens when we
get out of our bubbles. And it'severybody who's involved. So
I'm, I'm praying for that, likethank you for that. Thank you so
much. Is there any your lastopportunity, anything else you
want to say?
Richard Feldman (17:53):
Thank you for having the courage to keep on
doing this. This is however manypeople watch it, they're gonna
learn a whole lot from theobviously just this interview,
but all the other work you doand your own story, and so much
that you've contributed. Sothank you so, so much, you
Janice Fialka (18:08):
know, mica absolutely grayed out, we have
enormous respect for yourpioneering work, your commitment
to this. I remember years ago,Miko was asked, So mica, do you
wish you didn't have adisability? And, you know, he
was around people who haddisability pride. And he learned
about that. And he looked at theperson said, No, I mean, I get
(18:32):
to meet the best people in theworld. And I think there's
something to that, that when wefind our tribe, and we learn
with them, and reach out toothers, you know, we're with
whatever that means the bestpeople and ultimately, we all
are. So
Greta Harrison (18:49):
I love that. And that makes me share a story
about Micah. Because when I wasinterviewing the self advocates
in season two, there was adifference in the language they
wanted to use. Kayla wanted touse the language differently
abled, which I respected. And weused that. So then when I talked
(19:13):
to Micah and Tory, I mentionedthat and I said, Would you like
to do that? And Micah said, Letme think about it. And he came
back right away and said, Now, Ilearned a long time ago to be
proud of my disability. And Ilearned to go ahead and say that
and so I respected that too,both opinions are valid. You
know, I'm not gonna knock eitherone. But I just love that Kayla
(19:37):
and Micah both stood up for whatthey believed, you know, and
they both said how they wantedto have this addressed, but I
just wanted to mention, youknow, you've raised such a
strong, young man there, andhe's a great young man, as well
and
Janice Fialka (19:52):
what a beautiful I mean, your your gift, is your
ability to frame it that way andto even have respect out to ask
that question of each persongrayed out. So we live that up
and you as well. Well,
Greta Harrison (20:07):
thank you. It's been a pleasure talking to you.
I admire you both so much. Ithank you for being such
changemakers in the world and Iknow you're gonna keep on
keeping on and we willdefinitely be staying in touch.
Thank you
Unknown (20:21):
very much.
Greta Harrison (20:23):
Thank you for listening to Episode 13 of born
fabulous podcast's third season.
I hope you enjoyed it and wantto hear more. Some short video
clips from most episodes areavailable on our YouTube channel
and on born fabulouspodcast.com. In Episode 14, you
will meet Janice and Rich's sonMicah Fialka Feldman. Micah is
one of the stars of theacclaimed film intelligent
(20:44):
lives. He is also a teachingassistant at Syracuse
University, a sought afterkeynote speaker and soon to be
author. His book opening doorsis scheduled to launch in late
summer 2024 by inclusion press,please follow and like us on
Facebook, Instagram and Twitter.
If you enjoyed this episode, I'dbe honored if you would leave a
(21:06):
review wherever you've heardthis 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 ofepisodes one through four and
season one. The music and voiceare by Rachel fuller
Hello, my name is Greta Harrison. Welcome to
born fabulous podcast seasonthree, Episode 13. 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
(00:22):
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 last of fiveparts with Janice V. Alka and
(00:42):
Richard Feldman. Though theyboth say they are retired,
Janice and Richard continue 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
(01:05):
intellectual disability. It wasa real treat to have this in
depth discussion with bothJanice and rich. Now please
enjoy this short clip of love asa potion. The lyrics are by
Melissa regio, 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
Unknown (01:32):
inside.
Show
Janice Fialka (02:06):
the phrase that I use maybe I already have with
you Greta is that it's and Ilearned this from another parent
is not about letting go. It'slearning how to hold on
differently. Because none of usever really totally let go.
Right? I mean, yeah, you know, Ijust have to share with you
Thank you Rich for the for thosethoughts, because it gets me to
(02:28):
an end. But I picked up thesibling slam book, which you now
still can get on, you know,through through whatever, by Don
Meyer. But there's an articlewhen my Alma spoke at a
conference and this was in shewas in high school. And I just
want to read a couple of thelines. This is Emma mica taught
(02:49):
me to accept people for who theyare, instead of what they can or
can't do. I've learned to askothers for help. I haven't I
have not read this in years. SoEmma's saying I've asked
everyone to ask others for help.
We tend to see it as a weakness.
But asking really buildscommunity. If I can model that,
(03:11):
then siblings will learn thatfrom me. This is so interesting
is Yeah, so So there she is, youknow, sharing that as well. So
Greta Harrison (03:20):
that's beautiful. And I'm glad you I'm
glad you read that because Idon't want listeners to think
that oh, she doesn't love herbrother. She loves her brother
very much. And they have a veryclose relationship. You were
just being honest about siblingfeelings that happen when people
are growing up. Yeah, I'm reallyglad glad you did that, then.
It's an honest, that's honest,honest,
Janice Fialka (03:42):
they have so much fun together. And now at this
age, you know, we're the onesthey tease. So they get together
and go, you know, they makejokes about their weird parents.
So absolutely. And they presenttogether too. So thank you for
lifting that up as well. Yes,
Greta Harrison (03:58):
they do. And for the listeners who don't know,
Mike has presented at Harvard.
Correct? Harvard or
Janice Fialka (04:07):
something? Yeah.
Brown University. And I think hedidn't present you know, it's,
it's hard to track all of that.
Greta Harrison (04:15):
I wish all the educators in the past could know
all the things that he's done.
That's, that's amazing. Now,what about we've talked about
the rewards, and let's talkabout some of the pitfalls.
You've talked a few times aboutworrying in the middle of the
night, which I think everyparent can really relate to. So
just touch on that briefly. Wedon't want it to be a big
(04:37):
downer, but what are some of thepitfalls
Richard Feldman (04:47):
that can't be irreverent about it and laugh
once in a while. So thanks forthat opportunity. It's easy to
say that it's all uncertain thefuture but not being able to
make it better is always in yourbelly. because you can't, and
you know it. So we're alwaysconvincing ourselves, we know
it. It hurts. It's painful, it'sscary. You want, you know,
(05:12):
parents want things to besmooth, you want to be able to
hug and say it's all bite,right? It doesn't the world
doesn't work that way. Andnobody works that way. So, you
know, as specific, the pain thathe has to go through finding a
roommate, every year, the pain,the when he doesn't have
anything to do on a Saturdaynight, the pain when we're
(05:35):
getting 10 or 10 Textingmessages in an hour of how are
you I'm Adam, you know, and he'salways having an amazing day.
And but he'll have some, youknow, so you know, in terms of
his voice, but so it's, I thinkit's what all parents go through
in many ways. It's all parentswant their kids to be fulfilled,
(05:55):
happy. And you want it all thetime. But you also know, that's
not how the world is. And itnever is, it never will be. And,
and that's why you need acircle, you need a companion, I
mean, a friend, a lover, a wife,a spouse, the husband, you know,
cousin, or you need people tovent, you know, to share, it's
(06:18):
just,
Janice Fialka (06:20):
yeah, you set it well to fall apart, you know, to
moments of despair of care. Wecan't stay stuck there. But, you
know, most of us, or at leastmany of us experience that it's
real, you know? Yeah,
Greta Harrison (06:38):
I think it's powerful for people to know that
a couple like you who've beenreally helping so many families
over a long period of time, thatyou still have the same concerns
that almost every parent has. Sothank you for being honest. Just
Richard Feldman (06:56):
to add to that, I mean, also the amount of times
we fight with each other. And weargue, and we don't do it so
nicely, sometimes, right? Imean, you know, but But you
mentioned the word love, I mean,a few times and the difference
between loving your spouse andliking them all the time we're
agreeing on how to deal withyoung adults with disabilities
(07:20):
is a challenge. You know, so
Janice Fialka (07:23):
at our 40th anniversary gathering, which was
still during COVID, we hadoutside with drumming, and, you
know, everybody was distanced.
And mme, I gave a little talk, Ithink, was it COVID? It doesn't
really matter anyway, it wouldbe for COVID. That's right. And
Ella gave a little talk, youknow, and Micah did as well. But
Emma said, you know, one thing Ilearned from my parents is that
(07:44):
they can fight hard and lovehard. And at first, you know, I
went, you know, but so manypeople came up and thanked me
because, you know, we're sort ofshy as a culture about, you
know, the, the challenging waysof being and so, you know, we've
had our ups and downs andvarious points, we've gone into
therapy to sort of have anotherperson there to figure out help
(08:06):
us negotiate all of that tensionas well. So I appreciate your
you're asking that question,because it doesn't pay to not be
honest.
Greta Harrison (08:19):
And I love that you fight hard and love hard,
because it's that second partthat that makes it keep going,
isn't it? Yes. I love that. Now,beyond your books, your movie,
the movie is intelligent lives.
And there's another film outthere through the same door, and
poems. Are there any specificresources that you want to steer
(08:40):
parents and self advocates tothat help foster their future
interdependence andindependence? Well,
Janice Fialka (08:50):
what probably for us, I mean, there's so many now.
Oh, my goodness. One of theprobably key communities has
been, you know, people go to thewebsite, inclusion.com, Jack
pairpoint Marcia forest, LindaKhan. Every year up through up
(09:11):
until COVID, there was theToronto summer institute that
brought people from around theworld together, where we learned
about circle of friends maps, welearned how you chat, you know,
overall, you cannot rely on thesystems where you don't talk. I
mean, you know, we stillwithdraw from them, but it's not
(09:32):
the systems this that I'm theagencies that are going to be
able to do it all and that's ahard lesson. So anyways, I think
now the tour of the title isMarcia forest. Inclusion
Institute. I don't remember theexact let inclusion.com
definitely is one of them. Oh,there's so many people. I think
(09:55):
one of the books that have beenreally important to our family
was Andrew Solomon's book, farfrom the tree, which he
interviewed families that hadchildren with disabilities all
at all kinds of differences.
Yeah, I mean, you know, I couldturn my head to, you know, these
(10:15):
these books here as well. Well,I
Richard Feldman (10:20):
was just gonna say, I think it's, there's so
many books now because of thedisability justice movement
that's emerged that are theyoung activists that are
involved in all the socialmovements now. And, and and
again, it's it's individualadvocacy is one framing, seeing
(10:41):
it as a social question fortransforming society is seeing
the relationship between our ourunderstanding as parents, that
it's not just creating a safeway for young people to grow.
But how does the world change?
So there are so many books, Imean, any parent that has never
read no pity, which is thehistory of the disability
(11:01):
movement in the United States,you know, was written gobs a
years ago, you know, is missingan under an opportunity. You
know, there's, I can't think ofall the books there's a book by
Naomi Ortiz, self care, selfcare, and there's, we can
provide them and there's there'spodcasts and, and advocacy
(11:22):
groups that parents need to takea little peek into as they're
going through. And it'sdifferent for all parents at
different stages of theirchild's or young person's
thinking and growth. Right.
Greta Harrison (11:40):
I will have a page for you all and Micah,
okay, in the season three, partof the podcasts on boring,
fabulous podcast.com. And so onthat page, I will have a list
that you all can send me ofresources, but I'm glad that you
discussed some of them. And Ijust want to make a pivot here
(12:02):
because it reminds me, the firstmentor I had was Stephen Lor
regio. He's the former CEO ofBarnes and Noble, and their
daughter, their daughter,Melissa, and when their daughter
Melissa was born in 1988, therewere not any books write about
people with disabilities, it isbecause of Melissa's birth. And
(12:24):
his aha moment that he startedmaking sure. And for all those
who don't know, pre pre Amazon,you know, we relied on
bookstores, real bookstores, andhe made sure that they had lots
1000s and 1000s of titles, theyhad to do disability. So fast
(12:44):
forward from that. And for thosewho want to know my conversation
with Steve of orange juice, andSeason One, they started out in
season one, because you remindme of that there's so many
resources out there now thereweren't then, but there are now
there's
Janice Fialka (13:01):
I do want to list up one book for for listeners to
LS Huang, w o n g. And I don'thave the title right in front of
me, it's downstairs, but it'sabout it's stories of people
with disabilities. So when weare ready as family members, we
need to read those storiesbecause they really are our
(13:22):
teachers. And she did abeautiful job of collecting
stories. And actually, there's awonderful new children's book
we've already Burgess 20 copies,called we move together
beautiful illustrations of everykind of person in the whole
world. And they also the authorsare from Toronto, and they also
(13:46):
have it available for people whoare hearing impaired or visually
impaired as well. So on and on,but wanted to lift up those and
forgive us for those that haveinfluenced us that we did lift
out, but we'll have it on thehardcopy yep,
Greta Harrison (14:01):
that's great.
Well, thank you. I appreciatethat. Now, what advice would you
have for parents coming upbehind you? I know you could
probably do a whole weekend ofadvice, but
Janice Fialka (14:14):
Well, I think we've woven so much of sort of
our principles, you know, aswell. I mean, I have a quote
right here attached to mycomputer that says To hell with
bootstraps, for surely we needto swoop in on most days and
save each other. So you know,knowing that, yeah, as we've
(14:36):
said, over and over, we're notalone. I do think humor is
really important. Being able tolaugh, be silly, make inside
family jokes that maybe younever would share with anybody
else. But they work for youknow, for your family or they
work for our family. GreatExpectations. and not to
(15:01):
necessarily accept what peopletell you is the right way as in
school settings, but to x itrather than accept ACC PT,
expect more. You know, those area few that highlight in addition
to everything we've talked aboutin your wonderful listening.
Greta Harrison (15:21):
And Rich, I can see your wheels.
Richard Feldman (15:24):
There's a Native American conversation
that starts with, respect us orexpect us and they expecting
means that we're going to be atyour doorsteps knocking down the
walls for change. And and Iguess the only advice is to find
the support where you can askthe questions you need to ask, I
(15:47):
don't know, I really don't Imean, I think we've shared
Janice Fialka (15:50):
you're in it for the long run, you know, we're,
we're, we're in our 70s. Okay.
And Micah is in his late 30s,mid 30s. I mean, this is a long
road. And so you, you gotta takecare of yourself in community
with others, and really havehave fun times with the family,
(16:10):
you know, everything that I'd befalling apart, but maybe you go
trampoline, you know, or you gofor a hike or a swim or you go
eat ice cream, you know, cherishthose little moments, because
those are the things that getyou to the next place. Because
life can be so heavy. And it isheavy. And it's also got to be
(16:33):
filled with dancer ice cream, ornoodles, or whatever it might be
that brings you that joy andthat togetherness. Easy to say,
but it's true. I think it'sdefinitely
Richard Feldman (16:46):
true ice cream is the best, there's no
question. I think two things interms of advice. One is we make
this journey by walking androlling. And there is no
destination, except what wecreate. And it just got to be
filled with the belief thathuman beings can be much more
than we are. And that ourchildren and our family members
(17:10):
can change in this process. Evenwith all the disappointments
we'll face and all the obstaclesthat human beings can be
weighing and seeing what'spossible yet, but each of your
parents who are watching this,and professionals, if they have
that kind of respect for thepeople they're working with, and
they're relating to and thentheir own families will make
well into the worlds a littlelittle more forward. And I
Greta Harrison (17:33):
hope that there are a lot of community members
listening to because that's howinclusion really happens when we
get out of our bubbles. And it'severybody who's involved. So
I'm, I'm praying for that, likethank you for that. Thank you so
much. Is there any your lastopportunity, anything else you
want to say?
Richard Feldman (17:53):
Thank you for having the courage to keep on
doing this. This is however manypeople watch it, they're gonna
learn a whole lot from theobviously just this interview,
but all the other work you doand your own story, and so much
that you've contributed. Sothank you so, so much, you
Janice Fialka (18:08):
know, mica absolutely grayed out, we have
enormous respect for yourpioneering work, your commitment
to this. I remember years ago,Miko was asked, So mica, do you
wish you didn't have adisability? And, you know, he
was around people who haddisability pride. And he learned
about that. And he looked at theperson said, No, I mean, I get
(18:32):
to meet the best people in theworld. And I think there's
something to that, that when wefind our tribe, and we learn
with them, and reach out toothers, you know, we're with
whatever that means the bestpeople and ultimately, we all
are. So
Greta Harrison (18:49):
I love that. And that makes me share a story
about Micah. Because when I wasinterviewing the self advocates
in season two, there was adifference in the language they
wanted to use. Kayla wanted touse the language differently
abled, which I respected. And weused that. So then when I talked
(19:13):
to Micah and Tory, I mentionedthat and I said, Would you like
to do that? And Micah said, Letme think about it. And he came
back right away and said, Now, Ilearned a long time ago to be
proud of my disability. And Ilearned to go ahead and say that
and so I respected that too,both opinions are valid. You
know, I'm not gonna knock eitherone. But I just love that Kayla
(19:37):
and Micah both stood up for whatthey believed, you know, and
they both said how they wantedto have this addressed, but I
just wanted to mention, youknow, you've raised such a
strong, young man there, andhe's a great young man, as well
and
Janice Fialka (19:52):
what a beautiful I mean, your your gift, is your
ability to frame it that way andto even have respect out to ask
that question of each persongrayed out. So we live that up
and you as well. Well,
Greta Harrison (20:07):
thank you. It's been a pleasure talking to you.
I admire you both so much. Ithank you for being such
changemakers in the world and Iknow you're gonna keep on
keeping on and we willdefinitely be staying in touch.
Thank you
Unknown (20:21):
very much.
Greta Harrison (20:23):
Thank you for listening to Episode 13 of born
fabulous podcast's third season.
I hope you enjoyed it and wantto hear more. Some short video
clips from most episodes areavailable on our YouTube channel
and on born fabulouspodcast.com. In Episode 14, you
will meet Janice and Rich's sonMicah Fialka Feldman. Micah is
one of the stars of theacclaimed film intelligent
(20:44):
lives. He is also a teachingassistant at Syracuse
University, a sought afterkeynote speaker and soon to be
author. His book opening doorsis scheduled to launch in late
summer 2024 by inclusion press,please follow and like us on
Facebook, Instagram and Twitter.
If you enjoyed this episode, I'dbe honored if you would leave a
(21:06):
review wherever you've heardthis 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 ofepisodes one through four and
season one. The music and voiceare by Rachel fuller
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