April 3, 2023 • 50 mins
In this special National Siblings Day 2023 episode we hear the stories of 2 siblings with different backgrounds and ask them about their visions for the sibling community.
We are joined by social work doctoral student Aaron Quick who is the Public Policy Fellow on the Georgia Council on Developmental Disabilities, and by Social Impact Consultant, Sukanya Mukherjee.
Access the transcript of this episode here.
Acceda a la transcripción en español
Resources in this episode:
- 2020 protests
- Georgia Council on Developmental Disabilities
- The Sibling Leadership Network
- Sibnet on Facebook
- List of Disability Councils, State-by-state below the podcast description on the SLN blog
- Aaron's Brother's books: supercreativeadventures.com
- Resources for Self-Advocates (including a webinar series on love and sex)
- Dating, Love & Sexuality from a Sibling’s Perspective with Sheena Brevig
- Sibshops
Music Credit: Hope by Scandinavianz | https://soundcloud.com/scandinavianz
Music promoted by https://www.free-stock-music.com
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Chris Berstler (00:03):
Welcome to the sibling Leadership Network
podcast. The sibling LeadershipNetwork is a national nonprofit
whose mission is to providesiblings of individuals with
disabilities the information,support and tools to advocate
with their brothers and sistersand to promote the issue is
important to us and our entirefamilies.
Hello, and thank you for joiningus for another episode of the
(00:25):
SLN podcast this month in honorof National Siblings Day 2023 on
April 10, we are celebratingdiverse sibling stories sharing
their stories with us today areSukanya Mukherjee and Aaron
Quick. Thank you for joining ustoday. Please tell us about
yourself and what you do andwhat led you down your current
path.
Sukanya Mukherjee (00:46):
Yeah, my name is Sukanya. I currently am a
consultant at DeloitteConsulting and their federal
practice. And I primarily workwith federal health related
clients in the Washington DCarea. I graduated from Babson
College, it's a small liberalarts business oriented school
(01:06):
and Wellesley, Massachusetts and2019. And I've been at delayed
ever since. What led me to kindof become a consultant in the
federal government practices,really, because I've always kind
of been passionate aboutcreating an impact and helping
others and I was really drawn tosocial impact consulting and
thought it would be a good wayfor me to have a role where I
(01:29):
could make some money and also,you know, help folks and kind of
do something mission oriented.
And I think a lot of that kindof nature does come from me
growing up with my siblings. Sofor me, yeah, I definitely like
have always kind of gravitatedtowards jobs where I could help
others in some sort of way.
Aaron Quick (01:46):
Cool. All right, I guess I'll go. Yes, my name is
Aaron quick, he him pronouns. Socurrently, I am a full time
doctoral student at ClarkAtlanta University in Atlanta,
Georgia. My background is socialwork. And so I have my
bachelor's in Social Work fromCentral State University, and
Wilberforce Ohio and HBCU. Andthen I got my master's, this
(02:12):
past May, at North CarolinaState University. And so I've
kind of gone all the waythrough, I've never stopped when
it comes to education, you know,25. And I was like, Hey, let's
just go on and get anotherdegree. I've started doing that
my very focus in my PhD islooking at the mental health of
(02:33):
law enforcement, andspecifically how a lack of
mental health intervention forlaw enforcement officers is
leading to police brutality. Andso a big reason why that kind of
that became my interest isbecause of 2020. Because of the
protests, I've done a lot ofinternships in many different
(02:56):
areas regarding policy analysisand Social Policy and Social
Justice. And so after what wesaw, in 2020, with protests
after the death of George Floyd,Breonna, Taylor, all these, you
know, people of color, and beingin a lot of the communities that
I've been in, whether it'sworking at, you know, LGBT
centers, whether it's working atdomestic violence centers,
(03:18):
working with people withintellectual developmental
disabilities, just during mysocial work career, all these
communities have been impactedin some way, shape or form by
police violence. And so Irealized that I had to stop
looking at it from one specificlanes of just racism and
(03:38):
understanding what are theactual causes the causation that
leads to police brutality. Andso I tend to use a interest
conversion framework, whichmeans I'm trying to take the
interest of the community andwhat it is in the diverse
communities that are looking toend this social issue. And then
I've also worked in policedepartment, and so also
(04:00):
understanding their perspectiveto come to a convergence of
interest so that we can reallysolve this issue. And so that's
what my PhD kind of focusesaround. It centers around. I'm
right now working with theGeorgia Council on Developmental
Disabilities, specifically astheir public policy fellow. And
(04:21):
we're looking at, you know,policies and things that are
being introduced in regards toGeorgia legislation that impact
that community. And so, how mycareer trajectory and where I am
as a fellow kind of merged isunderstanding the policy realm,
understanding legislation, andhow it impacts specifically
(04:42):
marginalized and underservedcommunities is vital, even
though we do the grassrootgrassroots work, understanding
that policy on that macro levelimpacts everything influences
everything, and so having to getan understanding have that as
someone who one day wants to runfor office and be in Congress, I
(05:05):
have to, I really want to graspthe ins and outs. And as my
supervisor always tells me thegame of politics. And so that's
where I am right now. I'mreally, it's a full of amazing
opportunities. And not to only,you know, advocate for myself,
as I said, but also really justbe the microphone that allows
(05:28):
those with the everydayexperiences, to really make sure
that their voices is heard orheard. It's awesome. So that's a
little bit about me.
Chris Berstler (05:39):
Tell us about your siblings and what your
relationship was like growing upand how your relationship is
now.
Aaron Quick (05:45):
My brother, he is actually my older brother, he's
actually turning 29 Tomorrow,it's a we're planning his party.
So don't say anything. So yeah,we're in the midst of planning
his party, and we're getting himgetting him a cake. Yeah, my my
older brother Ryan, he is anindividual who lives with
autism. You know, growing up, Ithink it's, it's very
(06:08):
interesting, specifically, beingin a POC household, we didn't
have a lot of knowledge onunderstanding, you know, what I
appreciate about therelationship between, you know,
just as a family unit, my familyis that we've had many
conversations in regards to howdo we best navigate,
(06:31):
understanding that the needs ofmy brother Ryan are different
than, you know, me, I have twoolder brothers Ryan, and then my
oldest brother, his name isTrey, like, it's different. Our
needs as me and Trey isdifferent than Ryan's needs. And
so how do we navigate that, andI think, you know, growing up as
(06:51):
a younger brother, it was kindof hard for me to understand. It
was hard for me to kind ofthat's just, you know,
immaturity, like, you know, he'smy older brother. So I should,
he should be taking care of me.
And there were times where it'slike urine urine jars. And it
felt like and so that rolereversal was awkward for me at
time for me to understand. And Ithink it really was growing up
(07:15):
and being really starting my mysocial work career and being
exposed and really understandingwhat it means to be an
individual who lives with anintellectual or even a
developmental disability, Ireally began to understand by
doing that self work that selfinterested, you know, just
(07:40):
reflecting on self and ingrowing my competency in so
yeah, it definitely was alearning curve. But it wasn't
just for me, it was for myentire family. It's not just us
learning, but then you have toteach grandparents who don't
know much about it either. Andthen you have to teach aunts and
(08:00):
uncles in when we go to familyreunions. And, you know, as just
as you know, we evolve. So dothey are siblings, and sometimes
the things that trigger them, orthat set them off, change in
shift and adjust, or they areone day, they're not talking the
(08:20):
next day, they are talking andthey're like singing and
dancing. And so it's, it's thatconstant having to learn, even
though I know he's my brotherwho lives with autism, that is
not normally how I introducehim, he's just my brother. Like,
in so it's really interesting,because even this identity of
being a sieve is new to me, youknow, within like, the last
(08:44):
couple of years, because it'snot, it's never been something
that I've used, even when I'veinteracted with other people who
have siblings who have anintellectual developmental
disability, it's never beenlike, I've never identified as
someone like, yeah, I've asibling who has an intellectual
disability. No, it's just mybrother, he navigates the world
(09:04):
different. Lee then just like aswe all navigate the world and
the way we navigate this world.
And so yeah, it growing up. Itjust was different. You know, it
was different experiences, likethere just were highs or lows,
there were times where we'reseeing great growth. And then
(09:25):
there were times where we hadto, you know, take him to a
special facility to get him theassistance that he needed. And
again, it can be scary, andyou're not understanding what's
going on. And, you know, even asparents who've never had to do
this, and the conversationswe've had, they've been like, we
didn't really know what we weredoing either. Because just like,
(09:46):
parenting is not there's nohandbook, you know, it there's
no correct way or wrong way.
It's just you're doing theabsolute best that you can. And
so I think, you know, thebiggest thing that I've learned
Aren't the biggest advice that Igive to people as they're
navigating the process. First ofall, it's a lifelong process.
And let love and let yourconnection as a family kind of
(10:09):
be that foundation. And whenthat's the foundation, and you
know that you're always doingyour best, that's what that's
what that's what matters. Andso, you know, lots of
experiences, lots of areas forgrowth, and continuing to grow.
And at the end of the day, it'sjust always about, you know,
loving, you know, your sibling,loving your family, and always
(10:33):
just trying to do the absolutebest that you can, you can't
really ask for anything morethan that and into to do your
best. And so yeah, that's,that's a little bit about my
experience growing up.
Sukanya Mukherjee (10:46):
Thanks so much, Aaron. So for me, I
resonated with how you, you arelike the younger sibling and I
am as well, my daughter is 13years older than me, her. And
she like, her name is Jim Moore.
And she was born, you know,again, like 13 years before I
(11:07):
was born. So kind of she was hadher first couple years into this
life without kind of me evenbeing there. And I think a lot
of that time was spent abroad,like they, my parents had her in
India and then moved to Englandand Scotland actually to give
her better care and thedisabilities that she has
(11:29):
include deafness, developmentaldelay, and autism as well. But I
think her circumstances arereally tied to having she I
guess she's like, she's she wasborn with cognitive rubella
syndrome, which is where my momhad German measles when she was
(11:49):
pregnant with her. So the, the,I guess, intellectual
developmental disabilities thatcaught our occur because of that
are not often like, labeled aslike, autism, or like clear
developmental terms, but theylike, take on those her
behaviors and actions take onthose types of like, forms,
(12:09):
essentially. But I think herkind of main challenge that I've
kind of seen, you know, as Ikind of came into the world, and
we moved, you know, they movedto the US, like, around the time
I was born, was really like justwatching her, her early years,
just being really struggling toengage with the world. And I
(12:32):
think for her, it's reallychallenging because her
deafness, prevents her fromengaging with the speaking
world. But then her intellectualdisabilities prevent her from
engaging fully in the Deafculture as well. So there is
isolation, I think, from bothsides. And of course, I think
she definitely resonates themost with deaf culture. But you
(12:55):
can see, even within Deafculture, it's, you know, we have
to be very vigilant, because shecould be taken advantage of
she's more naive and justunaware. And she doesn't have
the same cognitive functions as,you know, normal, able bodied
folks who just happen to also bedeaf, but you know, everything
(13:17):
else, cognitive blue eyes, theirfunctioning, kind of just like
you and me. So there is adifference there. And it's hard
to watch that, I think, andbecause of her intellectual
disabilities, her learningability is stunted. In that,
like, she's not just able tokind of pick up what she doesn't
know. And her like, readingabilities sounded so definitely
challenging there. And I think,for me, growing up, I really did
(13:41):
kind of feel the role reversal.
So I like from a very young age,I think I felt like I was the
older sibling. And I, it's, youknow, I don't think I've ever
felt as though like she tookcare of me. So I definitely,
like see her as my sister. Butit's actually like interesting
(14:05):
because I don't really think ofher as my older sister. And I
think it's hard for me to likethink about it that way because
of the relationship that we'vehad. But I remember kind of
growing up and just watchinglike how much you know, my
parents really sacrificed forher, you know, leaving their
home country. Also just likespending so much time with her
(14:27):
outside of her she wouldabsolutely have her like
schooling activities to try tohelp her learn how to read more
and like try to get her involvedin different like sign language
classes or like taking her toStarbucks so she can mingle with
other deaf, ended up mingle withothers and the deaf community.
And just kind of watching thathas always been really
(14:47):
phenomenal to me, but I think,you know, growing up of course,
they're like, similar to youlike there were highs and lows,
so I feel like I felt oftentimesembarrassed. I didn't I
understand what was really goingon. And she, I think, was also
struggling a lot during thoseearly years with depression,
anxiety. So, you know, her moodwould fluctuate, and I think it
(15:12):
was hard for me to just fullyunderstand, like, you know, I
see that she's kind of in painor in suffering, but I really
can't comprehend like what to doabout it, per se. And because I
was the only other sibling Ididn't have a lot of like people
to turn to, and definitely grewup kind of feeling a little
lonely a little, like, justconfused. And as I grew older, I
(15:37):
joined I remember, like thefirst inkling of like me feeling
like, oh, there's like otherpeople that could start to
relate with me this is when Ijoined. Like, it was similar to
like a Best Buddies club in highschool. And we called it my
friend and I, and there wereother students there with
intellectual and developmentaldisabilities. And it was really
my first time meeting anyone whohad intellectual and
(15:58):
developmental disabilitiesoutside of my sister. So that
was just really helpful to seepeople in that those communities
and like how I could help themand that also encouraged me to,
like, you know, sit with mysister more and help her how to
read and like, you know, startedto spend more time with her and
we have our own type ofrelationship, right? Like it's a
(16:19):
really more silly loving, kindof nurturing relationship rather
than like a like, here, let mehelp you with your homework and
that type of thing, like you mayexpect from a normal like a
older sister, younger sisterrelationship. But yeah, that was
kind of like what it was likefor me growing up. And as I kind
of went through high school, Idefinitely did want to kind of
(16:40):
have a more independent collegeexperience. I think part of that
definitely drove my decision tolike move from California to
Boston and and just also justwanted to get some like
independence from like, what,what, what, who am I kind of
outside of this, like familyunit. And now I think, you know,
(17:01):
I'm like, three, four years outof college, I spent, actually
like my last semester, or lastyear in college writing a memoir
about my relationship with mysister, because I think there
was so much for me to process.
And I remember, like, I was inthe Honors Program, I school.
And basically, you could writeabout anything, and I like have
always wanted to write about,like, my relationship with my
sister, and like, what thatlooked like, and how my parents
(17:22):
have really, like poured theirlivelihoods and to like, helping
her. And it was really healingfor me to write that and try to,
like, explore just what it waslike to grow up and know that,
you know, you Aren't yourparents first priority and like,
like, what does it look like tokind of be in that role. And I
remember actually, like comingacross the sibling Leadership
(17:44):
Network, because I wanted tohear from other siblings, like
what they felt and like, youknow, if they felt similarly,
and I think the first time Ilike noticed that the sibling is
often kind of ignored is whensocial workers would come to our
house, you know, yearly, orlike, in doing kind of
checkpoints to see like, oh, isyour like, is she getting the
(18:06):
care that she needs? Like, youknow, are there any job
opportunities for her and theywould always, like, speak to
both of my parents, but theywould never really be interested
in speaking to me, because I'mjust not part of their like
checklist. And it's not reallyimportant for them. And I always
wondered, like, why not? Like, Ikind of see everything that they
see, like that my parents see,like, you know, why not talk to
me. And it was just started tokind of be fascinating for me,
(18:29):
like, okay, like this role ofthe sibling is kind of absent
from this narrative. So let meexplore this. And it was really
cool to just kind of be a partof the Facebook groups that were
there and just hear how peoplewere kind of dealing with their
own unique journeys andchallenges with well being ACIP.
So I would say like, myrelationship now is a lot
stronger, only. Partiallybecause I've done like, a lot of
(18:53):
reflection on it, I, you know,have spent a lot of time at home
to out during the pandemic andmove back. And it's just been
nice to see, like my sister growas well. And like, like, like
you were mentioning, they evolveas well. And like, now, she has
been able to pick up a lot morethings and we found a really
good program for her in ourlocal community college. That's
(19:14):
for deaf individuals who haveintellectual disabilities, and
like, you know, finding thatniche within a larger community
I think is so critical forhelping her get the the care and
support that she needs. And thenyou know, watching her make
friends and seeing her like, thehappy because of those like
circumstances. It's just been sokind of rewarding to watch. And
(19:37):
I think as she grows older, likeour relationship gets better
too. So it's, I think it's beengood and on an upward trend. And
I think what I really amthinking about now is like, you
know, what does the future looklike and I think one of the
reasons I joined more of theleadership type of roles in the
sibling leadership community isI'd love to hear from like a
(19:58):
other people, you know, my ageadults now like, what does it
look like for you to care foryour sibling? Like, what are the
options out there? And I thinksimilar to you, I don't, I don't
think my family had a ton ofinformation just given, you
know, you have to kind of seekit all out yourself. And I think
almost every sibling, like thistype of family unit can relate
(20:21):
to that. So it's definitelysomething that I'm like
continuing to explore.
Aaron Quick (20:27):
Yeah. And I kind of want to just, you know, add on
to what, what you were saying? Ithink it is. And I think
sometimes it's hard to, it's, itcan be difficult to say, because
it almost feels like you'rebeing selfish. But there is a
sense with typically, when youare the the younger sibling,
other said that you feel likeyou were kind of neglected, or
(20:50):
felt like you were never giventhe the attention that you
wanted growing up, because yourparents had some focus so much
on your sibling. And it's notuntil you're older that you
realize that. I get it now, likeyou said after that self
reflection, but I think there'sstill, I think that does speak
(21:12):
to even as, you know, resourcesand care whether it's social
workers counseling, whatever thecase may be, is being provided
to your to your sibling, andeven, you know, classes given to
your parents. other siblingsshould also be included in that,
because there are valid feelingsof feeling not just, I don't
(21:36):
even understand what's going on,just because of my cognitive
like, I just, I don't like noteven included in the narrative.
Like your opinion is notimportant.
Absolutely. I mean, there aremany times where you know,
something's going on in my life,and I you go to your parent, but
because, you know, your yoursiblings have been activated by
something or going through, andyour parents like, we cannot, we
(22:00):
can't do this with you rightnow. Okay, go do your homework
go, right. I don't care. That'swhat Sal said this to you at
school, I need to focus on yourbrother, or focus on you know,
your sibling, your sister,whatever the case may be. And,
and you feel like man, not onlydo I not understand what's going
on, but I don't understand whyI'm not getting any attention
either. And so I think that isa, it's a valid feeling, and
(22:22):
something that you have to workthrough, specifically, because
you can start forming resentmenttowards your sibling for
something that of course, theycannot control. And of course,
you know, it's never purposeful,by your parents, either,
specifically, those who do nothave adequate resources, they're
simply doing the best that theycan. And so it really is, I
(22:45):
think that is, I would imaginethat that is a shared feeling.
And even a feeling that as yougrew up, and as you start to
realize this, like, Man, I feelkind of bad for real in that way
or, but I still think that is avalid feeling that, that that,
you know, caseworkers, socialworkers who are working with
(23:08):
families that have an individualwith a developmental or
intellectual disability to alsotake note of, and that's coming
from, like someone in the field.
So but but yeah, I just wantedto validate what you were
saying.
Sukanya Mukherjee (23:22):
Thank you.
And I guess just to add onquickly, like, I think, um, I
think it also starts, I don'tknow, if you felt this way, but
I feel like it shapes mypersonality, and that I like,
started to feel bad to bother myparents. So I would, you know,
like, my, like, educationalstyle was to like, okay, like,
(23:44):
let me do the best that I can sothat they don't have to like
worry about my grades or how I'mdoing in school, like, let me
just do everything the way thatit's supposed to be. So there's
like no reason for them to comein, and like really monitoring
me. So I think that's like, it'sreally part of my personality,
(24:05):
like, even at work. I think whenI'm like dealing with my
manager, I'm kind of likeoperating in a way where like, I
will kind of make it so that youdon't really have to manage me
and I can like do everythingindependently and like you can
come in and I can show youthings but like I will kind of
operate independently. And Ithink a lot of that comes from
like, this feeling of like,okay, like, I don't think I can
(24:26):
really go to them for support,because they're so overwhelmed
and you feel like you want toprotect them in a way or at
least I did. And so you justlike start to like
overcompensate for it.
Aaron Quick (24:40):
No, I definitely agree. I think specifically in
my case, what it became was, Ialready expect you not to be
able to be there for me and so Ihave to take care of it myself.
Right. I have to like I'm gonnaget it done myself. It's never
to say that my parents you know,we're Never there. But I
(25:01):
understood, like, if I need toget something done, I need to do
it myself, I think that has hadan effect on me because even
now, it's difficult for me tolet people do things for me.
Yeah, because I'm so used todoing it myself, which I have to
learn very quickly that I can'tdo that, because I will burn out
very quickly. And sometimes it'sokay to be like, submissive, so
(25:28):
to say, not inlet, somebodyhelped me in let someone you
know, they see that you'restruggling. And so let me assist
you. In so in I've had to learnthrough my own self reflection,
that many that's kind of stemmedfrom that, like, growing up so
quickly and learning like, Oh,it's so crazy. Because even now
(25:54):
when when big things happen,like whether it's like, you
know, being in the Honor Societygetting a big scholarship, I
just wouldn't tell my parents,because I you don't have time,
so I'm just not gonna tell you.
And that that has definitelychanged over the years, but it
was just like, you know, yep,I'm doing good. I'm doing, you
know, doing great things. Butit's like, I don't know if
(26:17):
you'll have time, so I'm justgonna bring it up. But yeah, I
definitely, I definitely hearwhat you're saying.
Chris Berstler (26:24):
How has being a person of color impacted your
sibling journey?
Sukanya Mukherjee (26:28):
So I think for me, be kind of identifying
as an Indian American, hasshaped our family, I think, in
that, originally, like, when,you know, when my parents and my
sister, like, came from India, Ithink my mom and dad faced a lot
(26:50):
of social stigma, I think, youknow, before I was even born,
that I think it's definitelylike, impacted their perception
on and how welcoming, they thinkpeople will be of my sister. And
I think you know, even in theUS, they are really hesitant to
(27:10):
really open up about theirexperience with her. And you
know, they'll do kind of,they'll have, they'll take leaps
and bounds to help her connectwith others, but they rarely, I
rarely see them kind of makefriends with with others and try
to like, kind of share and thesetypes of conversations, because
(27:33):
I think a lot of like stigma isin their minds of like what
someone will say about oursituation. So I think that
really shapes it, because Idon't think that they feel like
they see it being normalized inthe South Asian culture of what
it looks like to have anindividual with intellectual or
(27:54):
developmental disabilities, andthen they don't know how to
navigate this conversation. Andthey don't know how to find
those people. So for me, I thinkhow that translated is that I
personally just grew up in a, Igrew up in a very east Asian
part of in a suburb in LosAngeles. And I think I was
(28:17):
really, like, eager and open tomake friends with anyone, but I
would not really talk about mysister at all, until much later
in my life where I felt morecomfortable opening up and kind
of being honest about like, my,who I am and how she is a part
of my identity. So I thinkthat's really how I think like,
culturally that's shaped alittle bit of it. And I think, I
(28:42):
don't know if like, if I was apart of if I if I identified as
a different ethnicity or race,if there are more resources in a
particular ethnic or raciallike, makeup. I don't know if
that's true, but I don't know ifthey would have shaped my
experience differently. But Ijust know, like for me, in the
(29:03):
South Asian community, like Idon't really see it talked about
really at all. And it could bethat I just don't really like
know how to find those resourcestoo.
Aaron Quick (29:13):
Yeah, I definitely would say, if anything, I don't
know if being a person of colorof being black African American,
really impacted our experience.
Truly, you know, on a just like,really in our face like we
experienced difficulty simplybecause of our you know, because
(29:34):
of our background. I think manytimes the the issues are lack I
kind of mentioned before, kindof like internal within the
community. So just a lack ofknowledge within black
communities or just communitiesof color have definitely allowed
stigmas to perpetuatethemselves. and be reiterated,
(29:59):
and I think also growing up in areligious household, just prayed
away, like those things alsohave an impact on people
believing like, let's just prayfor it, or you'll get over it
just like many differentidentities. It's certain of you
that need that people face, youknow, we can just go to temple
(30:20):
go to church, it'll be fine.
Like, we can just kind of ignoreit, because we don't understand
it. So we ignore what we don'tunderstand. Just like sometimes
we fear what we don'tunderstand. There were times
where people just did not wantto understand and then there are
times where peopleovercompensate, like, you don't
have to talk to him really slow,like he can, he can convert, you
(30:45):
know what I mean? Like justovercompensating? Or don't do
baby talk, like, why are wedoing that? That's not what you
need to do. And so I think manytimes, it's less about, you
know, the color of my skin, justpeople, they're, they're ill
informed their own ignorance. Inmany times in specific
(31:06):
communities, ignorance that'sbeen allowed to kind of continue
on, in a lack of information hasplayed a much bigger part. In
our overall experience.
Chris Berstler (31:17):
When was the first time you met another sib?
And how did it make you feel?
Aaron Quick (31:23):
I can't remember the first time that I actually,
you know, you interact withpeople who also have siblings
who have intellectualdevelopmental disabilities. But
again, it's not like I kind oflike, harped on it or like, oh,
my gosh, we have this in common.
Like it was it was never likethat. So it was never something
that was really stuck in mybrain. And I don't feel like
(31:45):
when I got to a place where Icould acknowledge, oh, my gosh,
we do have that in common. Thatis something that made me feel
any type of way. Because by thattime, I know I don't look at,
like I said, my sibling, or evenothers with individual
intellectual or developmentaldisabilities, do a deficit land.
(32:06):
And so I'm like, Oh, you justhave a sibling. Like, if we talk
about our experiences, we'lltalk about our experiences, just
like people with diversebackgrounds or experiences, talk
about their experiences. I feellike the first couple of people
that I've met, it wasn't evensomething that we had, like, you
know, heart to heartconversation about it, it was
(32:28):
one of those like them passinglike, oh, you know, my brother's
a, you know, because my brotheris like, a, an author. And he's
written a children's book andgotten awards for and I bring it
up, and I'm, like, oh, my gosh,that's so crazy. Yeah, it's
really, really cool. And allthese kinds of things. And then
I'll bring up the point that,you know, it's even more
(32:48):
amazing, because he lives withautism. And, you know, it's
like, oh, my gosh, my sibling,bla bla bla, so we talk about
it. And so it's just like, it'sjust like hyping up your
sibling. That's all I'm doing.
It's not because of the, youknow, intellectual disability he
lives with. It's just becausehe's my sibling. And I think
(33:09):
he's awesome. And he's doingthings because I never date.
Right. No book. I, you know, Ijust read up. So, you know, and
I definitely haven't won anyaward. It's, it really is. I
never really harped on it likethat. And so, you know, it's, I
don't know.
Sukanya Mukherjee (33:29):
For me, it was a little different, because
I think, um, I like just, Ireally wanted to meet someone
who is similar to me, and I justfelt like no one could
understand where I'm comingfrom. And there was a little bit
of jealousy for me. I know, likegrowing up, because I would
watch my other friends who hadolder siblings. And they would
(33:50):
like take them out to themovies, and they'd be like, Oh,
my older sister took me shoppingand like, you know, just like
things that like I would want todo. And I just like don't have
anyone to do that with Are theyreally going? Well, my older
sister like shared the storyabout fruit to me about like,
what happens in high school andlike when ordering when middle
school and I just, you know,don't have those like conceptual
(34:11):
things to compare to. But Ithink the first time for me when
I met my older sibling was wason on Facebook, through the
sibling subnet, like Facebookgroup. And I think I just like
responded to someone's post andthey were going through a rough
time. And I kind of was justlike, hey, I kind of like
resonate with this like, youknow, I hope you're feeling
(34:34):
okay. And they messaged me andlike, we just like talked for a
little bit like online and itwas just really that one day but
I remember feeling reallysurprised that like, I could
connect with a stranger who I'venever met before in real life,
but I'm just off of thatexperience and kind of like give
them comfort during that time.
And I thought that was somethingreally unique and rare.
(34:56):
especially about the siblingcommunity that like you just
have this, you know, if youchoose to talk about it, you do
have a shared experience thatnot everyone who's who's not
ACIP can really just understand.
And that shared understandingoften allows you to just be
(35:18):
supportive of one another in away that like others just gives
can't be. So that was myexperience,
Chris Berstler (35:25):
In what ways positively or negatively did the
pandemic impact yourrelationship with your siblings?
Aaron Quick (35:33):
So definitely, during the, during the pandemic,
during the start of thepandemic, I actually was getting
my master's. And so my parentswere here in Atlanta, and I was
in North Carolina, definitely,that is where a level of my self
introspection kind of started injust reflecting on growth. And
(35:57):
because that was the first realtime of course, during my my
Bachelor's, I was away. But thiswas the real time it was on my
own paying for my own place, allthat all that stuff that I that
I really was able to sit in myown four walls, and just kind of
reflect on life, reflect on myfamily, reflect on my
relationship with my brother.
And that's where a lot of growthhappened for me. So that
(36:17):
actually, once the pandemic wasover, I actually, in I finished
my degree I, I moved back home.
And it was amazing to just seehow it really is that time a way
to really sit and reflect,allowed things allowed me to
(36:42):
find my own healing and find myown growth so that when I come
back, I'm really able tocontinue to build on that
foundation. And ask forforgiveness for things that need
to ask for forgiveness for, andreally strengthen our
relationship. And that's reallywhat happened, our relationship
grew. As my sibling also grew,as my parents also grew, as my,
(37:03):
my other brother also grew. Andso when we came back together,
it was actually really amazinghow, just sometimes that that
time apart, really isbeneficial. But when you come
back together, and you can say,Yeah, you know what I said, and
when I did, and my lack ofunderstanding, I think I've
really grown. And it wasamazing, because we started like
(37:24):
having family meetings weekly.
And just checking in talkingabout where we are, how we're
growing all that differentstuff. And so yeah, and so I
think that that was definitelysomething that really was
amazing, I think, unfortunatelyon on a negative note, what kind
of end up happening because ofthe pain panic. My my brother
(37:45):
developed, you know, a fear ofgerms. And so now, we're working
through that. Because now helike washes his hands to his
skin rubbing off. And so it'slike, okay, so when I talk
about, it's a constantly, it'sevolving. Okay, so now how do
we, how do we work through this,and I think the most difficult
(38:08):
part that we experience as afamily is that he's very high
functioning. That's just becauseof the work that we've done. And
the hardest thing was when hesaid, I don't want to feel this
way anymore. And so I don't wantto be afraid of germs. And yet I
am and to hear that you'restruggling, and we're trying to
(38:29):
work through it. Is that Is thatdifficult, and we have to sit
with that as a family, we haveto talk to a family therapist
and be like, how do we he'sletting us know that I don't
want to live with this. And yetI am how do we navigate this?
How do we work through this? Arewe doing something wrong? And so
(38:54):
even with the growth, therecomes new challenges that you
have to now work through withthis new growth that you've that
you've earned, that you've, youknow, garnered, and so, you
know, the pandemic, just likeall stages of life, ups and
downs, ups and downs. But when,you know, like I said, our
(39:17):
connection our love is thefoundation. It's helping us work
through that. And it's gettingbetter every single day. But
yeah, with with life comesdifferent curveballs that are
that are thrown at you.
Sukanya Mukherjee (39:30):
Yeah, for me, the pandemic I was home for like
half of it. And then the goodsecond half, I was home like
basically like, end of 2020Onward. And I know like while I
was away I was in DC I know Iwas hearing from my parents just
how difficult it was for her tojust be kind of taken out of the
(39:55):
environments that she was usedto like she could no longer see
the friends that she'd made atStarbucks, or she couldn't go to
school for an hour anymore. Likeit turned into remote online
learning. And that was achallenge for her initially. And
I think, you know, it was achallenge for my parents too.
And similarly, she was reallyscared of COVID. Because I think
(40:19):
she just, you know, didn'tunderstand it really well. And,
you know, people are tellingher, like, you have to wear a
mask and like, you could catchit. And she's like, Oh, how do I
know if I'm gonna catch it? Andit's like, I think it's really
so hard to kind of explain thosemore complicated topics. And
it's like, I think sometimesthey, like my sister will just
(40:41):
kind of take it for what it isright? Like, okay, you're
telling me it's a virus, so Ican't catch it. So like, do I
stay inside all the time, andit's hard for her to see the
shades of grey. So definitely, Ikind of resonate with what
you're saying. And then. Butoverall, I think like the
pandemic, didn't, you know, Ithink she was really happy when
(41:05):
the pandemic started to ease upbecause she was able to, like,
go out in her circles again. AndI think that just kind of goes
to say that, like, the pandemicfor her, like those communities,
I think created isolation,especially for folks who really
just, like, thrive on like,being in person together and
(41:29):
having those experiences. It wasreally challenging, I think, and
even like, having smaller socialdistancing gatherings, I think
was tough, because she doesn'tknow those, those people that
well, and she doesn't know like,how to navigate those kind of
questions that maybe you andIran asked like, okay, like, you
(41:52):
know, have you gotten testedrecently, or like, you know, and
you said, Okay, we're only kindof mingling with each other. So
it's, it's almost easier to kindof be like, I think, you know,
you have to kind of stayisolated for until we know that
it's kind of safe for you to goout. And I think there's also
like a heightened level ofconcern to about her health,
because she's not able tocommunicate and express that how
(42:13):
she's feeling. So if she were toget sick, there was always this
kind of concern, like, okay, isshe going to be able to
communicate, she's reallyfeeling to make sure that she's
getting the care that she needs.
So definitely some like fearassociated with that. But, um,
yeah, I would say like, overall,like, it was a learning
experience for her to, like, getused to remote learning, and
like, what that looked like, andshe learned how to kind of use
(42:35):
PowerPoint and Excel along theway. And like, now, she makes me
like birthday cards andPowerPoint, and it's really
cute. And like, I think, like,those were, like, skills that
she learned kind of being, like,forced to be at home at home,
and like, kind of start to like,make use of the situation. So
definitely some positives, butdefinitely, I think overall, it
(42:56):
was challenging. And she's she'sso happy to be back, you know,
at school and things like thatnow, so I think, better that
it's, it's kind of easing up foreveryone, I'm sure.
Chris Berstler (43:09):
What are your hopes for the future of the
sibling community?
Sukanya Mukherjee (43:14):
For me, I would love to see more
information and resources beingshared. I think it's so critical
to share like these stories,too. But it's also just as
critical to share maybe liketactical information. And I
think, you know, we are all sobusy. And I think a lot of the
(43:36):
work that we do is you know,volunteering, and we're trying
to do what we can I just I thinkI wish that there were like
resources where I could kind of,like if I live in a state, you
know, live in state ofCalifornia, like what are the
resources available, like in acentralized place, like, for
depending on the type ofdisability that your sibling
house, like, what should you do?
And like, that type of database,of course, will take so much
(43:58):
time and effort to build but Ithink, you know, in an ideal
world, I think that would befantastic. Because I think
families want to figure thingsout, you know, but with with the
resources they have and theywant to be able to be self
sufficient looked things up. Andit's just can be hard when
there's just not as muchcentralized reliable information
out there. And you're kind ofhaving to cobble together
(44:20):
everything and I think almostevery family runs into the
situation where they're needingto do that.
Aaron Quick (44:28):
Yeah, I would, I would definitely agree on on
resources. In in specific, Iwould say even specifically
resources for the some of themore like nuanced things that
individuals with intellectualand developmental disabilities
experience so like, for example,right now, my my brother, he's
(44:52):
vocalizing that like, I want tobe married. I want to have kids.
I want to move out the house. II want that And so that's a
whole conversation in, in, inhow to we then navigate helping
are helping to make that happen.
Finding a partner, you know,he's getting to the point where
(45:14):
he no longer wants to be, youknow, the dependent of my
parents. And so like, Okay,you're Wow. Okay, so how will we
how are we going to navigatethat? How are we going to, you
know, what are steps for that,and then you realize there's no
resource to help you to navigatethat there's, well, there's
(45:35):
resources to make sure, youknow, jobs and, you know, other
forms of being independent, butsomething like relationship, and
then how do we, whoever is theother, you know, his partner,
like having a conversation with,you know, their parents, and
here it is, you know, he's 29years old, and we're doing that,
(45:59):
is that awkward? Should we bedoing that? So, it's, that's a
whole different ballgame thanwhat we were working with, you
know, five, two years ago. Theseare the, I think some of the
little things that are kind oflike, not even thought about.
And once it kind of happens,you're like, we don't know how
(46:21):
to go about this. And so yeah, Ithink resources are always going
to be something that we want tosee evolving and being more
readily available. And just evenon those little, little things
that are that, you know, peoplewith intellectual developmental
(46:42):
disabilities want to experiencejust like the rest of us. But I
definitely agree more resources,and specifically, more resources
for siblings at a younger age,and helping them navigate it,
and helping them understand itmore. Helping parents teach
their, their, their their otherchildren, how to navigate it,
(47:06):
and how to understand it more.
All things that I think arenecessary, and I think will make
the experience. I don't think,you know, easier isn't not the
word I want to say. But justhelping our competency, even
from our younger age, and how dowe talk about it? How do we, you
(47:30):
know, understand it, I thinkit's very important. So I would
love to see that.
Chris Berstler (47:34):
Finally, do you have any plans to celebrate
National Siblings Day this year?
Aaron Quick (47:39):
Yeah, I'll be straight up honest. Like, I
didn't know the thing. That nowlike, like, when I saw the
question, I was like, Wait,we're gonna do a little Google
search? Because I was like, Yes,save honestly. So I'm playing.
Now he's gonna get this partytomorrow. And it's about to be
(47:59):
awesome. So I'm looking forwardto that. But I think now that
has come to my attention. Youknow, me, me and my two
siblings. I mean, we're veryclose, like, We talk all the
time, even though he's gettingready to move to Mexico. But
yeah, my oldest brother. Butwe're very, we're very close.
(48:23):
And so I've definitely now thatI know, I definitely, even if
it's something as simple assending them a text, like in our
own group, our little grouptexts, like, I love you. And,
you know, we have all our littlebaby pictures together, just
stating that, you know, that'salways it's just the little
thing sometimes. And I guaranteeyou, like, there's no way by my
(48:44):
older brother, who you don'tknow about every day, but he's
gonna know about it this year. Iactually put it on my on my
calendar. And so it's like, hey,just send them a quick little
text to let them know that youknow, you're thinking about
them.
Sukanya Mukherjee (48:58):
Yeah, no, same. I didn't actually, like
fully know about it. I thinkit's probably something where,
like, every other year orsomething, if I go on Facebook
on that day, maybe I'll see likeposts about it, but I don't even
go on Facebook anymore. So like,I don't know, um, but I think
you're right. Yeah. And thatlike, if I actually like my
sister loves, like, sharing anymessage that she can for any
(49:22):
holiday. You know, it's reallybig for her like, Merry
Christmas, Happy New Year, HappyFourth of July, like she's got
us send a message on theholiday. So my teacher this
holiday, I think she will beenthusiastically sending me a
message. So I should send herone as well. And I can introduce
it to her. So I think thatthat'd be a nice thing to do.
But you know, I think of course,like we should, we should really
(49:43):
treat every day as like a day toreally appreciate her siblings.
So yeah, I don't nothing like aspecial per se but we'd love to
like, share that with her too.
Chris Berstler (49:53):
Thank you so much for sharing your stories
with the SLN audience today. Ireally appreciate it and I think
siblings out there, will get alot out of it. So thank you so
much for your time. Anyresources that were mentioned
you can find in the descriptionbelow. And we hope that you and
your siblings have a very HappyNational Siblings Day on April
(50:13):
10. Thank you.
Find resources, tools andinformation about the sibling
experience on sibling leadershipdot for the sibling Leadership
Network is a nonprofit, and werely on support from our
audience. Find the donationbutton on our homepage and
contribute to the ever growingsibling movement.
Welcome to the sibling Leadership Network
podcast. The sibling LeadershipNetwork is a national nonprofit
whose mission is to providesiblings of individuals with
disabilities the information,support and tools to advocate
with their brothers and sistersand to promote the issue is
important to us and our entirefamilies.
Hello, and thank you for joiningus for another episode of the
(00:25):
SLN podcast this month in honorof National Siblings Day 2023 on
April 10, we are celebratingdiverse sibling stories sharing
their stories with us today areSukanya Mukherjee and Aaron
Quick. Thank you for joining ustoday. Please tell us about
yourself and what you do andwhat led you down your current
path.
Sukanya Mukherjee (00:46):
Yeah, my name is Sukanya. I currently am a
consultant at DeloitteConsulting and their federal
practice. And I primarily workwith federal health related
clients in the Washington DCarea. I graduated from Babson
College, it's a small liberalarts business oriented school
(01:06):
and Wellesley, Massachusetts and2019. And I've been at delayed
ever since. What led me to kindof become a consultant in the
federal government practices,really, because I've always kind
of been passionate aboutcreating an impact and helping
others and I was really drawn tosocial impact consulting and
thought it would be a good wayfor me to have a role where I
(01:29):
could make some money and also,you know, help folks and kind of
do something mission oriented.
And I think a lot of that kindof nature does come from me
growing up with my siblings. Sofor me, yeah, I definitely like
have always kind of gravitatedtowards jobs where I could help
others in some sort of way.
Aaron Quick (01:46):
Cool. All right, I guess I'll go. Yes, my name is
Aaron quick, he him pronouns. Socurrently, I am a full time
doctoral student at ClarkAtlanta University in Atlanta,
Georgia. My background is socialwork. And so I have my
bachelor's in Social Work fromCentral State University, and
Wilberforce Ohio and HBCU. Andthen I got my master's, this
(02:12):
past May, at North CarolinaState University. And so I've
kind of gone all the waythrough, I've never stopped when
it comes to education, you know,25. And I was like, Hey, let's
just go on and get anotherdegree. I've started doing that
my very focus in my PhD islooking at the mental health of
(02:33):
law enforcement, andspecifically how a lack of
mental health intervention forlaw enforcement officers is
leading to police brutality. Andso a big reason why that kind of
that became my interest isbecause of 2020. Because of the
protests, I've done a lot ofinternships in many different
(02:56):
areas regarding policy analysisand Social Policy and Social
Justice. And so after what wesaw, in 2020, with protests
after the death of George Floyd,Breonna, Taylor, all these, you
know, people of color, and beingin a lot of the communities that
I've been in, whether it'sworking at, you know, LGBT
centers, whether it's working atdomestic violence centers,
(03:18):
working with people withintellectual developmental
disabilities, just during mysocial work career, all these
communities have been impactedin some way, shape or form by
police violence. And so Irealized that I had to stop
looking at it from one specificlanes of just racism and
(03:38):
understanding what are theactual causes the causation that
leads to police brutality. Andso I tend to use a interest
conversion framework, whichmeans I'm trying to take the
interest of the community andwhat it is in the diverse
communities that are looking toend this social issue. And then
I've also worked in policedepartment, and so also
(04:00):
understanding their perspectiveto come to a convergence of
interest so that we can reallysolve this issue. And so that's
what my PhD kind of focusesaround. It centers around. I'm
right now working with theGeorgia Council on Developmental
Disabilities, specifically astheir public policy fellow. And
(04:21):
we're looking at, you know,policies and things that are
being introduced in regards toGeorgia legislation that impact
that community. And so, how mycareer trajectory and where I am
as a fellow kind of merged isunderstanding the policy realm,
understanding legislation, andhow it impacts specifically
(04:42):
marginalized and underservedcommunities is vital, even
though we do the grassrootgrassroots work, understanding
that policy on that macro levelimpacts everything influences
everything, and so having to getan understanding have that as
someone who one day wants to runfor office and be in Congress, I
(05:05):
have to, I really want to graspthe ins and outs. And as my
supervisor always tells me thegame of politics. And so that's
where I am right now. I'mreally, it's a full of amazing
opportunities. And not to only,you know, advocate for myself,
as I said, but also really justbe the microphone that allows
(05:28):
those with the everydayexperiences, to really make sure
that their voices is heard orheard. It's awesome. So that's a
little bit about me.
Chris Berstler (05:39):
Tell us about your siblings and what your
relationship was like growing upand how your relationship is
now.
Aaron Quick (05:45):
My brother, he is actually my older brother, he's
actually turning 29 Tomorrow,it's a we're planning his party.
So don't say anything. So yeah,we're in the midst of planning
his party, and we're getting himgetting him a cake. Yeah, my my
older brother Ryan, he is anindividual who lives with
autism. You know, growing up, Ithink it's, it's very
(06:08):
interesting, specifically, beingin a POC household, we didn't
have a lot of knowledge onunderstanding, you know, what I
appreciate about therelationship between, you know,
just as a family unit, my familyis that we've had many
conversations in regards to howdo we best navigate,
(06:31):
understanding that the needs ofmy brother Ryan are different
than, you know, me, I have twoolder brothers Ryan, and then my
oldest brother, his name isTrey, like, it's different. Our
needs as me and Trey isdifferent than Ryan's needs. And
so how do we navigate that, andI think, you know, growing up as
(06:51):
a younger brother, it was kindof hard for me to understand. It
was hard for me to kind ofthat's just, you know,
immaturity, like, you know, he'smy older brother. So I should,
he should be taking care of me.
And there were times where it'slike urine urine jars. And it
felt like and so that rolereversal was awkward for me at
time for me to understand. And Ithink it really was growing up
(07:15):
and being really starting my mysocial work career and being
exposed and really understandingwhat it means to be an
individual who lives with anintellectual or even a
developmental disability, Ireally began to understand by
doing that self work that selfinterested, you know, just
(07:40):
reflecting on self and ingrowing my competency in so
yeah, it definitely was alearning curve. But it wasn't
just for me, it was for myentire family. It's not just us
learning, but then you have toteach grandparents who don't
know much about it either. Andthen you have to teach aunts and
(08:00):
uncles in when we go to familyreunions. And, you know, as just
as you know, we evolve. So dothey are siblings, and sometimes
the things that trigger them, orthat set them off, change in
shift and adjust, or they areone day, they're not talking the
(08:20):
next day, they are talking andthey're like singing and
dancing. And so it's, it's thatconstant having to learn, even
though I know he's my brotherwho lives with autism, that is
not normally how I introducehim, he's just my brother. Like,
in so it's really interesting,because even this identity of
being a sieve is new to me, youknow, within like, the last
(08:44):
couple of years, because it'snot, it's never been something
that I've used, even when I'veinteracted with other people who
have siblings who have anintellectual developmental
disability, it's never beenlike, I've never identified as
someone like, yeah, I've asibling who has an intellectual
disability. No, it's just mybrother, he navigates the world
(09:04):
different. Lee then just like aswe all navigate the world and
the way we navigate this world.
And so yeah, it growing up. Itjust was different. You know, it
was different experiences, likethere just were highs or lows,
there were times where we'reseeing great growth. And then
(09:25):
there were times where we hadto, you know, take him to a
special facility to get him theassistance that he needed. And
again, it can be scary, andyou're not understanding what's
going on. And, you know, even asparents who've never had to do
this, and the conversationswe've had, they've been like, we
didn't really know what we weredoing either. Because just like,
(09:46):
parenting is not there's nohandbook, you know, it there's
no correct way or wrong way.
It's just you're doing theabsolute best that you can. And
so I think, you know, thebiggest thing that I've learned
Aren't the biggest advice that Igive to people as they're
navigating the process. First ofall, it's a lifelong process.
And let love and let yourconnection as a family kind of
(10:09):
be that foundation. And whenthat's the foundation, and you
know that you're always doingyour best, that's what that's
what that's what matters. Andso, you know, lots of
experiences, lots of areas forgrowth, and continuing to grow.
And at the end of the day, it'sjust always about, you know,
loving, you know, your sibling,loving your family, and always
(10:33):
just trying to do the absolutebest that you can, you can't
really ask for anything morethan that and into to do your
best. And so yeah, that's,that's a little bit about my
experience growing up.
Sukanya Mukherjee (10:46):
Thanks so much, Aaron. So for me, I
resonated with how you, you arelike the younger sibling and I
am as well, my daughter is 13years older than me, her. And
she like, her name is Jim Moore.
And she was born, you know,again, like 13 years before I
(11:07):
was born. So kind of she was hadher first couple years into this
life without kind of me evenbeing there. And I think a lot
of that time was spent abroad,like they, my parents had her in
India and then moved to Englandand Scotland actually to give
her better care and thedisabilities that she has
(11:29):
include deafness, developmentaldelay, and autism as well. But I
think her circumstances arereally tied to having she I
guess she's like, she's she wasborn with cognitive rubella
syndrome, which is where my momhad German measles when she was
(11:49):
pregnant with her. So the, the,I guess, intellectual
developmental disabilities thatcaught our occur because of that
are not often like, labeled aslike, autism, or like clear
developmental terms, but theylike, take on those her
behaviors and actions take onthose types of like, forms,
(12:09):
essentially. But I think herkind of main challenge that I've
kind of seen, you know, as Ikind of came into the world, and
we moved, you know, they movedto the US, like, around the time
I was born, was really like justwatching her, her early years,
just being really struggling toengage with the world. And I
(12:32):
think for her, it's reallychallenging because her
deafness, prevents her fromengaging with the speaking
world. But then her intellectualdisabilities prevent her from
engaging fully in the Deafculture as well. So there is
isolation, I think, from bothsides. And of course, I think
she definitely resonates themost with deaf culture. But you
(12:55):
can see, even within Deafculture, it's, you know, we have
to be very vigilant, because shecould be taken advantage of
she's more naive and justunaware. And she doesn't have
the same cognitive functions as,you know, normal, able bodied
folks who just happen to also bedeaf, but you know, everything
(13:17):
else, cognitive blue eyes, theirfunctioning, kind of just like
you and me. So there is adifference there. And it's hard
to watch that, I think, andbecause of her intellectual
disabilities, her learningability is stunted. In that,
like, she's not just able tokind of pick up what she doesn't
know. And her like, readingabilities sounded so definitely
challenging there. And I think,for me, growing up, I really did
(13:41):
kind of feel the role reversal.
So I like from a very young age,I think I felt like I was the
older sibling. And I, it's, youknow, I don't think I've ever
felt as though like she tookcare of me. So I definitely,
like see her as my sister. Butit's actually like interesting
(14:05):
because I don't really think ofher as my older sister. And I
think it's hard for me to likethink about it that way because
of the relationship that we'vehad. But I remember kind of
growing up and just watchinglike how much you know, my
parents really sacrificed forher, you know, leaving their
home country. Also just likespending so much time with her
(14:27):
outside of her she wouldabsolutely have her like
schooling activities to try tohelp her learn how to read more
and like try to get her involvedin different like sign language
classes or like taking her toStarbucks so she can mingle with
other deaf, ended up mingle withothers and the deaf community.
And just kind of watching thathas always been really
(14:47):
phenomenal to me, but I think,you know, growing up of course,
they're like, similar to youlike there were highs and lows,
so I feel like I felt oftentimesembarrassed. I didn't I
understand what was really goingon. And she, I think, was also
struggling a lot during thoseearly years with depression,
anxiety. So, you know, her moodwould fluctuate, and I think it
(15:12):
was hard for me to just fullyunderstand, like, you know, I
see that she's kind of in painor in suffering, but I really
can't comprehend like what to doabout it, per se. And because I
was the only other sibling Ididn't have a lot of like people
to turn to, and definitely grewup kind of feeling a little
lonely a little, like, justconfused. And as I grew older, I
(15:37):
joined I remember, like thefirst inkling of like me feeling
like, oh, there's like otherpeople that could start to
relate with me this is when Ijoined. Like, it was similar to
like a Best Buddies club in highschool. And we called it my
friend and I, and there wereother students there with
intellectual and developmentaldisabilities. And it was really
my first time meeting anyone whohad intellectual and
(15:58):
developmental disabilitiesoutside of my sister. So that
was just really helpful to seepeople in that those communities
and like how I could help themand that also encouraged me to,
like, you know, sit with mysister more and help her how to
read and like, you know, startedto spend more time with her and
we have our own type ofrelationship, right? Like it's a
(16:19):
really more silly loving, kindof nurturing relationship rather
than like a like, here, let mehelp you with your homework and
that type of thing, like you mayexpect from a normal like a
older sister, younger sisterrelationship. But yeah, that was
kind of like what it was likefor me growing up. And as I kind
of went through high school, Idefinitely did want to kind of
(16:40):
have a more independent collegeexperience. I think part of that
definitely drove my decision tolike move from California to
Boston and and just also justwanted to get some like
independence from like, what,what, what, who am I kind of
outside of this, like familyunit. And now I think, you know,
(17:01):
I'm like, three, four years outof college, I spent, actually
like my last semester, or lastyear in college writing a memoir
about my relationship with mysister, because I think there
was so much for me to process.
And I remember, like, I was inthe Honors Program, I school.
And basically, you could writeabout anything, and I like have
always wanted to write about,like, my relationship with my
sister, and like, what thatlooked like, and how my parents
(17:22):
have really, like poured theirlivelihoods and to like, helping
her. And it was really healingfor me to write that and try to,
like, explore just what it waslike to grow up and know that,
you know, you Aren't yourparents first priority and like,
like, what does it look like tokind of be in that role. And I
remember actually, like comingacross the sibling Leadership
(17:44):
Network, because I wanted tohear from other siblings, like
what they felt and like, youknow, if they felt similarly,
and I think the first time Ilike noticed that the sibling is
often kind of ignored is whensocial workers would come to our
house, you know, yearly, orlike, in doing kind of
checkpoints to see like, oh, isyour like, is she getting the
(18:06):
care that she needs? Like, youknow, are there any job
opportunities for her and theywould always, like, speak to
both of my parents, but theywould never really be interested
in speaking to me, because I'mjust not part of their like
checklist. And it's not reallyimportant for them. And I always
wondered, like, why not? Like, Ikind of see everything that they
see, like that my parents see,like, you know, why not talk to
me. And it was just started tokind of be fascinating for me,
(18:29):
like, okay, like this role ofthe sibling is kind of absent
from this narrative. So let meexplore this. And it was really
cool to just kind of be a partof the Facebook groups that were
there and just hear how peoplewere kind of dealing with their
own unique journeys andchallenges with well being ACIP.
So I would say like, myrelationship now is a lot
stronger, only. Partiallybecause I've done like, a lot of
(18:53):
reflection on it, I, you know,have spent a lot of time at home
to out during the pandemic andmove back. And it's just been
nice to see, like my sister growas well. And like, like, like
you were mentioning, they evolveas well. And like, now, she has
been able to pick up a lot morethings and we found a really
good program for her in ourlocal community college. That's
(19:14):
for deaf individuals who haveintellectual disabilities, and
like, you know, finding thatniche within a larger community
I think is so critical forhelping her get the the care and
support that she needs. And thenyou know, watching her make
friends and seeing her like, thehappy because of those like
circumstances. It's just been sokind of rewarding to watch. And
(19:37):
I think as she grows older, likeour relationship gets better
too. So it's, I think it's beengood and on an upward trend. And
I think what I really amthinking about now is like, you
know, what does the future looklike and I think one of the
reasons I joined more of theleadership type of roles in the
sibling leadership community isI'd love to hear from like a
(19:58):
other people, you know, my ageadults now like, what does it
look like for you to care foryour sibling? Like, what are the
options out there? And I thinksimilar to you, I don't, I don't
think my family had a ton ofinformation just given, you
know, you have to kind of seekit all out yourself. And I think
almost every sibling, like thistype of family unit can relate
(20:21):
to that. So it's definitelysomething that I'm like
continuing to explore.
Aaron Quick (20:27):
Yeah. And I kind of want to just, you know, add on
to what, what you were saying? Ithink it is. And I think
sometimes it's hard to, it's, itcan be difficult to say, because
it almost feels like you'rebeing selfish. But there is a
sense with typically, when youare the the younger sibling,
other said that you feel likeyou were kind of neglected, or
(20:50):
felt like you were never giventhe the attention that you
wanted growing up, because yourparents had some focus so much
on your sibling. And it's notuntil you're older that you
realize that. I get it now, likeyou said after that self
reflection, but I think there'sstill, I think that does speak
(21:12):
to even as, you know, resourcesand care whether it's social
workers counseling, whatever thecase may be, is being provided
to your to your sibling, andeven, you know, classes given to
your parents. other siblingsshould also be included in that,
because there are valid feelingsof feeling not just, I don't
(21:36):
even understand what's going on,just because of my cognitive
like, I just, I don't like noteven included in the narrative.
Like your opinion is notimportant.
Absolutely. I mean, there aremany times where you know,
something's going on in my life,and I you go to your parent, but
because, you know, your yoursiblings have been activated by
something or going through, andyour parents like, we cannot, we
(22:00):
can't do this with you rightnow. Okay, go do your homework
go, right. I don't care. That'swhat Sal said this to you at
school, I need to focus on yourbrother, or focus on you know,
your sibling, your sister,whatever the case may be. And,
and you feel like man, not onlydo I not understand what's going
on, but I don't understand whyI'm not getting any attention
either. And so I think that isa, it's a valid feeling, and
(22:22):
something that you have to workthrough, specifically, because
you can start forming resentmenttowards your sibling for
something that of course, theycannot control. And of course,
you know, it's never purposeful,by your parents, either,
specifically, those who do nothave adequate resources, they're
simply doing the best that theycan. And so it really is, I
(22:45):
think that is, I would imaginethat that is a shared feeling.
And even a feeling that as yougrew up, and as you start to
realize this, like, Man, I feelkind of bad for real in that way
or, but I still think that is avalid feeling that, that that,
you know, caseworkers, socialworkers who are working with
(23:08):
families that have an individualwith a developmental or
intellectual disability to alsotake note of, and that's coming
from, like someone in the field.
So but but yeah, I just wantedto validate what you were
saying.
Sukanya Mukherjee (23:22):
Thank you.
And I guess just to add onquickly, like, I think, um, I
think it also starts, I don'tknow, if you felt this way, but
I feel like it shapes mypersonality, and that I like,
started to feel bad to bother myparents. So I would, you know,
like, my, like, educationalstyle was to like, okay, like,
(23:44):
let me do the best that I can sothat they don't have to like
worry about my grades or how I'mdoing in school, like, let me
just do everything the way thatit's supposed to be. So there's
like no reason for them to comein, and like really monitoring
me. So I think that's like, it'sreally part of my personality,
(24:05):
like, even at work. I think whenI'm like dealing with my
manager, I'm kind of likeoperating in a way where like, I
will kind of make it so that youdon't really have to manage me
and I can like do everythingindependently and like you can
come in and I can show youthings but like I will kind of
operate independently. And Ithink a lot of that comes from
like, this feeling of like,okay, like, I don't think I can
(24:26):
really go to them for support,because they're so overwhelmed
and you feel like you want toprotect them in a way or at
least I did. And so you justlike start to like
overcompensate for it.
Aaron Quick (24:40):
No, I definitely agree. I think specifically in
my case, what it became was, Ialready expect you not to be
able to be there for me and so Ihave to take care of it myself.
Right. I have to like I'm gonnaget it done myself. It's never
to say that my parents you know,we're Never there. But I
(25:01):
understood, like, if I need toget something done, I need to do
it myself, I think that has hadan effect on me because even
now, it's difficult for me tolet people do things for me.
Yeah, because I'm so used todoing it myself, which I have to
learn very quickly that I can'tdo that, because I will burn out
very quickly. And sometimes it'sokay to be like, submissive, so
(25:28):
to say, not inlet, somebodyhelped me in let someone you
know, they see that you'restruggling. And so let me assist
you. In so in I've had to learnthrough my own self reflection,
that many that's kind of stemmedfrom that, like, growing up so
quickly and learning like, Oh,it's so crazy. Because even now
(25:54):
when when big things happen,like whether it's like, you
know, being in the Honor Societygetting a big scholarship, I
just wouldn't tell my parents,because I you don't have time,
so I'm just not gonna tell you.
And that that has definitelychanged over the years, but it
was just like, you know, yep,I'm doing good. I'm doing, you
know, doing great things. Butit's like, I don't know if
(26:17):
you'll have time, so I'm justgonna bring it up. But yeah, I
definitely, I definitely hearwhat you're saying.
Chris Berstler (26:24):
How has being a person of color impacted your
sibling journey?
Sukanya Mukherjee (26:28):
So I think for me, be kind of identifying
as an Indian American, hasshaped our family, I think, in
that, originally, like, when,you know, when my parents and my
sister, like, came from India, Ithink my mom and dad faced a lot
(26:50):
of social stigma, I think, youknow, before I was even born,
that I think it's definitelylike, impacted their perception
on and how welcoming, they thinkpeople will be of my sister. And
I think you know, even in theUS, they are really hesitant to
(27:10):
really open up about theirexperience with her. And you
know, they'll do kind of,they'll have, they'll take leaps
and bounds to help her connectwith others, but they rarely, I
rarely see them kind of makefriends with with others and try
to like, kind of share and thesetypes of conversations, because
(27:33):
I think a lot of like stigma isin their minds of like what
someone will say about oursituation. So I think that
really shapes it, because Idon't think that they feel like
they see it being normalized inthe South Asian culture of what
it looks like to have anindividual with intellectual or
(27:54):
developmental disabilities, andthen they don't know how to
navigate this conversation. Andthey don't know how to find
those people. So for me, I thinkhow that translated is that I
personally just grew up in a, Igrew up in a very east Asian
part of in a suburb in LosAngeles. And I think I was
(28:17):
really, like, eager and open tomake friends with anyone, but I
would not really talk about mysister at all, until much later
in my life where I felt morecomfortable opening up and kind
of being honest about like, my,who I am and how she is a part
of my identity. So I thinkthat's really how I think like,
culturally that's shaped alittle bit of it. And I think, I
(28:42):
don't know if like, if I was apart of if I if I identified as
a different ethnicity or race,if there are more resources in a
particular ethnic or raciallike, makeup. I don't know if
that's true, but I don't know ifthey would have shaped my
experience differently. But Ijust know, like for me, in the
(29:03):
South Asian community, like Idon't really see it talked about
really at all. And it could bethat I just don't really like
know how to find those resourcestoo.
Aaron Quick (29:13):
Yeah, I definitely would say, if anything, I don't
know if being a person of colorof being black African American,
really impacted our experience.
Truly, you know, on a just like,really in our face like we
experienced difficulty simplybecause of our you know, because
(29:34):
of our background. I think manytimes the the issues are lack I
kind of mentioned before, kindof like internal within the
community. So just a lack ofknowledge within black
communities or just communitiesof color have definitely allowed
stigmas to perpetuatethemselves. and be reiterated,
(29:59):
and I think also growing up in areligious household, just prayed
away, like those things alsohave an impact on people
believing like, let's just prayfor it, or you'll get over it
just like many differentidentities. It's certain of you
that need that people face, youknow, we can just go to temple
(30:20):
go to church, it'll be fine.
Like, we can just kind of ignoreit, because we don't understand
it. So we ignore what we don'tunderstand. Just like sometimes
we fear what we don'tunderstand. There were times
where people just did not wantto understand and then there are
times where peopleovercompensate, like, you don't
have to talk to him really slow,like he can, he can convert, you
(30:45):
know what I mean? Like justovercompensating? Or don't do
baby talk, like, why are wedoing that? That's not what you
need to do. And so I think manytimes, it's less about, you
know, the color of my skin, justpeople, they're, they're ill
informed their own ignorance. Inmany times in specific
(31:06):
communities, ignorance that'sbeen allowed to kind of continue
on, in a lack of information hasplayed a much bigger part. In
our overall experience.
Chris Berstler (31:17):
When was the first time you met another sib?
And how did it make you feel?
Aaron Quick (31:23):
I can't remember the first time that I actually,
you know, you interact withpeople who also have siblings
who have intellectualdevelopmental disabilities. But
again, it's not like I kind oflike, harped on it or like, oh,
my gosh, we have this in common.
Like it was it was never likethat. So it was never something
that was really stuck in mybrain. And I don't feel like
(31:45):
when I got to a place where Icould acknowledge, oh, my gosh,
we do have that in common. Thatis something that made me feel
any type of way. Because by thattime, I know I don't look at,
like I said, my sibling, or evenothers with individual
intellectual or developmentaldisabilities, do a deficit land.
(32:06):
And so I'm like, Oh, you justhave a sibling. Like, if we talk
about our experiences, we'lltalk about our experiences, just
like people with diversebackgrounds or experiences, talk
about their experiences. I feellike the first couple of people
that I've met, it wasn't evensomething that we had, like, you
know, heart to heartconversation about it, it was
(32:28):
one of those like them passinglike, oh, you know, my brother's
a, you know, because my brotheris like, a, an author. And he's
written a children's book andgotten awards for and I bring it
up, and I'm, like, oh, my gosh,that's so crazy. Yeah, it's
really, really cool. And allthese kinds of things. And then
I'll bring up the point that,you know, it's even more
(32:48):
amazing, because he lives withautism. And, you know, it's
like, oh, my gosh, my sibling,bla bla bla, so we talk about
it. And so it's just like, it'sjust like hyping up your
sibling. That's all I'm doing.
It's not because of the, youknow, intellectual disability he
lives with. It's just becausehe's my sibling. And I think
(33:09):
he's awesome. And he's doingthings because I never date.
Right. No book. I, you know, Ijust read up. So, you know, and
I definitely haven't won anyaward. It's, it really is. I
never really harped on it likethat. And so, you know, it's, I
don't know.
Sukanya Mukherjee (33:29):
For me, it was a little different, because
I think, um, I like just, Ireally wanted to meet someone
who is similar to me, and I justfelt like no one could
understand where I'm comingfrom. And there was a little bit
of jealousy for me. I know, likegrowing up, because I would
watch my other friends who hadolder siblings. And they would
(33:50):
like take them out to themovies, and they'd be like, Oh,
my older sister took me shoppingand like, you know, just like
things that like I would want todo. And I just like don't have
anyone to do that with Are theyreally going? Well, my older
sister like shared the storyabout fruit to me about like,
what happens in high school andlike when ordering when middle
school and I just, you know,don't have those like conceptual
(34:11):
things to compare to. But Ithink the first time for me when
I met my older sibling was wason on Facebook, through the
sibling subnet, like Facebookgroup. And I think I just like
responded to someone's post andthey were going through a rough
time. And I kind of was justlike, hey, I kind of like
resonate with this like, youknow, I hope you're feeling
(34:34):
okay. And they messaged me andlike, we just like talked for a
little bit like online and itwas just really that one day but
I remember feeling reallysurprised that like, I could
connect with a stranger who I'venever met before in real life,
but I'm just off of thatexperience and kind of like give
them comfort during that time.
And I thought that was somethingreally unique and rare.
(34:56):
especially about the siblingcommunity that like you just
have this, you know, if youchoose to talk about it, you do
have a shared experience thatnot everyone who's who's not
ACIP can really just understand.
And that shared understandingoften allows you to just be
(35:18):
supportive of one another in away that like others just gives
can't be. So that was myexperience,
Chris Berstler (35:25):
In what ways positively or negatively did the
pandemic impact yourrelationship with your siblings?
Aaron Quick (35:33):
So definitely, during the, during the pandemic,
during the start of thepandemic, I actually was getting
my master's. And so my parentswere here in Atlanta, and I was
in North Carolina, definitely,that is where a level of my self
introspection kind of started injust reflecting on growth. And
(35:57):
because that was the first realtime of course, during my my
Bachelor's, I was away. But thiswas the real time it was on my
own paying for my own place, allthat all that stuff that I that
I really was able to sit in myown four walls, and just kind of
reflect on life, reflect on myfamily, reflect on my
relationship with my brother.
And that's where a lot of growthhappened for me. So that
(36:17):
actually, once the pandemic wasover, I actually, in I finished
my degree I, I moved back home.
And it was amazing to just seehow it really is that time a way
to really sit and reflect,allowed things allowed me to
(36:42):
find my own healing and find myown growth so that when I come
back, I'm really able tocontinue to build on that
foundation. And ask forforgiveness for things that need
to ask for forgiveness for, andreally strengthen our
relationship. And that's reallywhat happened, our relationship
grew. As my sibling also grew,as my parents also grew, as my,
(37:03):
my other brother also grew. Andso when we came back together,
it was actually really amazinghow, just sometimes that that
time apart, really isbeneficial. But when you come
back together, and you can say,Yeah, you know what I said, and
when I did, and my lack ofunderstanding, I think I've
really grown. And it wasamazing, because we started like
(37:24):
having family meetings weekly.
And just checking in talkingabout where we are, how we're
growing all that differentstuff. And so yeah, and so I
think that that was definitelysomething that really was
amazing, I think, unfortunatelyon on a negative note, what kind
of end up happening because ofthe pain panic. My my brother
(37:45):
developed, you know, a fear ofgerms. And so now, we're working
through that. Because now helike washes his hands to his
skin rubbing off. And so it'slike, okay, so when I talk
about, it's a constantly, it'sevolving. Okay, so now how do
we, how do we work through this,and I think the most difficult
(38:08):
part that we experience as afamily is that he's very high
functioning. That's just becauseof the work that we've done. And
the hardest thing was when hesaid, I don't want to feel this
way anymore. And so I don't wantto be afraid of germs. And yet I
am and to hear that you'restruggling, and we're trying to
(38:29):
work through it. Is that Is thatdifficult, and we have to sit
with that as a family, we haveto talk to a family therapist
and be like, how do we he'sletting us know that I don't
want to live with this. And yetI am how do we navigate this?
How do we work through this? Arewe doing something wrong? And so
(38:54):
even with the growth, therecomes new challenges that you
have to now work through withthis new growth that you've that
you've earned, that you've, youknow, garnered, and so, you
know, the pandemic, just likeall stages of life, ups and
downs, ups and downs. But when,you know, like I said, our
(39:17):
connection our love is thefoundation. It's helping us work
through that. And it's gettingbetter every single day. But
yeah, with with life comesdifferent curveballs that are
that are thrown at you.
Sukanya Mukherjee (39:30):
Yeah, for me, the pandemic I was home for like
half of it. And then the goodsecond half, I was home like
basically like, end of 2020Onward. And I know like while I
was away I was in DC I know Iwas hearing from my parents just
how difficult it was for her tojust be kind of taken out of the
(39:55):
environments that she was usedto like she could no longer see
the friends that she'd made atStarbucks, or she couldn't go to
school for an hour anymore. Likeit turned into remote online
learning. And that was achallenge for her initially. And
I think, you know, it was achallenge for my parents too.
And similarly, she was reallyscared of COVID. Because I think
(40:19):
she just, you know, didn'tunderstand it really well. And,
you know, people are tellingher, like, you have to wear a
mask and like, you could catchit. And she's like, Oh, how do I
know if I'm gonna catch it? Andit's like, I think it's really
so hard to kind of explain thosemore complicated topics. And
it's like, I think sometimesthey, like my sister will just
(40:41):
kind of take it for what it isright? Like, okay, you're
telling me it's a virus, so Ican't catch it. So like, do I
stay inside all the time, andit's hard for her to see the
shades of grey. So definitely, Ikind of resonate with what
you're saying. And then. Butoverall, I think like the
pandemic, didn't, you know, Ithink she was really happy when
(41:05):
the pandemic started to ease upbecause she was able to, like,
go out in her circles again. AndI think that just kind of goes
to say that, like, the pandemicfor her, like those communities,
I think created isolation,especially for folks who really
just, like, thrive on like,being in person together and
(41:29):
having those experiences. It wasreally challenging, I think, and
even like, having smaller socialdistancing gatherings, I think
was tough, because she doesn'tknow those, those people that
well, and she doesn't know like,how to navigate those kind of
questions that maybe you andIran asked like, okay, like, you
(41:52):
know, have you gotten testedrecently, or like, you know, and
you said, Okay, we're only kindof mingling with each other. So
it's, it's almost easier to kindof be like, I think, you know,
you have to kind of stayisolated for until we know that
it's kind of safe for you to goout. And I think there's also
like a heightened level ofconcern to about her health,
because she's not able tocommunicate and express that how
(42:13):
she's feeling. So if she were toget sick, there was always this
kind of concern, like, okay, isshe going to be able to
communicate, she's reallyfeeling to make sure that she's
getting the care that she needs.
So definitely some like fearassociated with that. But, um,
yeah, I would say like, overall,like, it was a learning
experience for her to, like, getused to remote learning, and
like, what that looked like, andshe learned how to kind of use
(42:35):
PowerPoint and Excel along theway. And like, now, she makes me
like birthday cards andPowerPoint, and it's really
cute. And like, I think, like,those were, like, skills that
she learned kind of being, like,forced to be at home at home,
and like, kind of start to like,make use of the situation. So
definitely some positives, butdefinitely, I think overall, it
(42:56):
was challenging. And she's she'sso happy to be back, you know,
at school and things like thatnow, so I think, better that
it's, it's kind of easing up foreveryone, I'm sure.
Chris Berstler (43:09):
What are your hopes for the future of the
sibling community?
Sukanya Mukherjee (43:14):
For me, I would love to see more
information and resources beingshared. I think it's so critical
to share like these stories,too. But it's also just as
critical to share maybe liketactical information. And I
think, you know, we are all sobusy. And I think a lot of the
(43:36):
work that we do is you know,volunteering, and we're trying
to do what we can I just I thinkI wish that there were like
resources where I could kind of,like if I live in a state, you
know, live in state ofCalifornia, like what are the
resources available, like in acentralized place, like, for
depending on the type ofdisability that your sibling
house, like, what should you do?
And like, that type of database,of course, will take so much
(43:58):
time and effort to build but Ithink, you know, in an ideal
world, I think that would befantastic. Because I think
families want to figure thingsout, you know, but with with the
resources they have and theywant to be able to be self
sufficient looked things up. Andit's just can be hard when
there's just not as muchcentralized reliable information
out there. And you're kind ofhaving to cobble together
(44:20):
everything and I think almostevery family runs into the
situation where they're needingto do that.
Aaron Quick (44:28):
Yeah, I would, I would definitely agree on on
resources. In in specific, Iwould say even specifically
resources for the some of themore like nuanced things that
individuals with intellectualand developmental disabilities
experience so like, for example,right now, my my brother, he's
(44:52):
vocalizing that like, I want tobe married. I want to have kids.
I want to move out the house. II want that And so that's a
whole conversation in, in, inhow to we then navigate helping
are helping to make that happen.
Finding a partner, you know,he's getting to the point where
(45:14):
he no longer wants to be, youknow, the dependent of my
parents. And so like, Okay,you're Wow. Okay, so how will we
how are we going to navigatethat? How are we going to, you
know, what are steps for that,and then you realize there's no
resource to help you to navigatethat there's, well, there's
(45:35):
resources to make sure, youknow, jobs and, you know, other
forms of being independent, butsomething like relationship, and
then how do we, whoever is theother, you know, his partner,
like having a conversation with,you know, their parents, and
here it is, you know, he's 29years old, and we're doing that,
(45:59):
is that awkward? Should we bedoing that? So, it's, that's a
whole different ballgame thanwhat we were working with, you
know, five, two years ago. Theseare the, I think some of the
little things that are kind oflike, not even thought about.
And once it kind of happens,you're like, we don't know how
(46:21):
to go about this. And so yeah, Ithink resources are always going
to be something that we want tosee evolving and being more
readily available. And just evenon those little, little things
that are that, you know, peoplewith intellectual developmental
(46:42):
disabilities want to experiencejust like the rest of us. But I
definitely agree more resources,and specifically, more resources
for siblings at a younger age,and helping them navigate it,
and helping them understand itmore. Helping parents teach
their, their, their their otherchildren, how to navigate it,
(47:06):
and how to understand it more.
All things that I think arenecessary, and I think will make
the experience. I don't think,you know, easier isn't not the
word I want to say. But justhelping our competency, even
from our younger age, and how dowe talk about it? How do we, you
(47:30):
know, understand it, I thinkit's very important. So I would
love to see that.
Chris Berstler (47:34):
Finally, do you have any plans to celebrate
National Siblings Day this year?
Aaron Quick (47:39):
Yeah, I'll be straight up honest. Like, I
didn't know the thing. That nowlike, like, when I saw the
question, I was like, Wait,we're gonna do a little Google
search? Because I was like, Yes,save honestly. So I'm playing.
Now he's gonna get this partytomorrow. And it's about to be
(47:59):
awesome. So I'm looking forwardto that. But I think now that
has come to my attention. Youknow, me, me and my two
siblings. I mean, we're veryclose, like, We talk all the
time, even though he's gettingready to move to Mexico. But
yeah, my oldest brother. Butwe're very, we're very close.
(48:23):
And so I've definitely now thatI know, I definitely, even if
it's something as simple assending them a text, like in our
own group, our little grouptexts, like, I love you. And,
you know, we have all our littlebaby pictures together, just
stating that, you know, that'salways it's just the little
thing sometimes. And I guaranteeyou, like, there's no way by my
(48:44):
older brother, who you don'tknow about every day, but he's
gonna know about it this year. Iactually put it on my on my
calendar. And so it's like, hey,just send them a quick little
text to let them know that youknow, you're thinking about
them.
Sukanya Mukherjee (48:58):
Yeah, no, same. I didn't actually, like
fully know about it. I thinkit's probably something where,
like, every other year orsomething, if I go on Facebook
on that day, maybe I'll see likeposts about it, but I don't even
go on Facebook anymore. So like,I don't know, um, but I think
you're right. Yeah. And thatlike, if I actually like my
sister loves, like, sharing anymessage that she can for any
(49:22):
holiday. You know, it's reallybig for her like, Merry
Christmas, Happy New Year, HappyFourth of July, like she's got
us send a message on theholiday. So my teacher this
holiday, I think she will beenthusiastically sending me a
message. So I should send herone as well. And I can introduce
it to her. So I think thatthat'd be a nice thing to do.
But you know, I think of course,like we should, we should really
(49:43):
treat every day as like a day toreally appreciate her siblings.
So yeah, I don't nothing like aspecial per se but we'd love to
like, share that with her too.
Chris Berstler (49:53):
Thank you so much for sharing your stories
with the SLN audience today. Ireally appreciate it and I think
siblings out there, will get alot out of it. So thank you so
much for your time. Anyresources that were mentioned
you can find in the descriptionbelow. And we hope that you and
your siblings have a very HappyNational Siblings Day on April
(50:13):
10. Thank you.
Find resources, tools andinformation about the sibling
experience on sibling leadershipdot for the sibling Leadership
Network is a nonprofit, and werely on support from our
audience. Find the donationbutton on our homepage and
contribute to the ever growingsibling movement.
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