May 15, 2023 • 37 mins
This month, we speak with sib-in-laws Sumithra Murthy and Cory Hartman about their experiences as sib-in-laws and hear their advice for sibs and potential future sib-in-laws.
Access the transcript of this episode here.
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"We are the people who are insiders, outsiders." —Sumithra Murthy
"This is new to us"—Cory Hartman
Resources in this episode:
- Department of Disability and Human Development at the University of Illinois at Chicago
- Family Caregiver Alliance
- National Alliance for Caregiving
- The Arc
- The Sibling Leadership Network
- Sib-in-Laws Facebook Group
- National Institute for the Empowerment of Persons with Intellectual Disabilities NIEPID
- Ashadeep
- Nayi Desha
- Parivar
- Impact Magazine Sibs Feature Issue
"Our opinions and perspectives also need to be considered in decision making processes." —Sumithra Murthy
Music Credit: Hope by Scandinavianz | https://soundcloud.com/scandinavianz
Music promoted by https://www.free-stock-music.com
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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 in our entirefamilies. Hello, and thank you
(00:23):
for joining us for anotherepisode of the sibling
Leadership Network Podcast.
Today we will be talking aboutseven laws. I am joined by seven
laws Corey Hartman and SumiThoreau. Murthy, thank you so
much for joining us today.
Cory Hartman (00:36):
Thank you for having me. Sure.
Sumithra Murthy (00:38):
It's a pleasure. So
Chris Berstler (00:39):
I'd like to kick things off and just ask you to
please tell us about yourselfand how you came to be ACIP in
law.
Sumithra Murthy (00:46):
So I'm Sumithra Murthy, and I'm the visiting
clinical assistant professor atthe Department of Disability and
Human Development at theUniversity of Illinois at
Chicago. I'm from India, andI've been married for more than
27 years now. So my husband'ssister, my sister in law is an
(01:06):
individual with intellectualdisability. And I think that's
how, like, in India, you know, Iknew my husband before my
wedding. So I knew that he had asister with intellectual
disability. So I was kind ofprepared, when I went into the
family that I would have theseexperiences with my seventh law,
(01:30):
I think that's a briefintroduction about me and how I
came to be a civil law.
Cory Hartman (01:35):
So my name is Cory Harmon, I am a director of
safety and security. I am 35years old and have three amazing
girls age 1715 and four, beforeme and my wife and getting
married in June of 2017. Ireally didn't have much
interactions with those withdisabilities except, you know,
(01:57):
in minor situations. So, whenmeeting my wife, she told me
about having baggage and I said,Well, I have an ex wife and two
kids. So we all have baggage,and she said, Well, mine's a
little different. My sister hasdevelopmental disabilities as
well. And I'm like, okay, youknow, that doesn't make us or
(02:18):
break us and who we are. Sothat's how I became in volved.
In this similar role,
Chris Berstler (02:24):
in your own words, what's it like to be a
seventh law, please share anychallenges or benefits you
experience?
Sumithra Murthy (02:31):
My sister in law lives in India with my
mother in law right now. And mymother in law is almost 78 years
old, as her primary caregiver.
My father in law passed away in2007. And my husband doesn't
have any other siblings. So yousee, because of the lack of
future planning options inIndia, my husband and I do
(02:52):
understand that we would be thepotential future caregivers. So
one of the major challenges isto unit what would happen to my
sister in law, you know, aftermy mother in law, you know,
getting a residency status herewould be a great challenge. My
sister in law has multiplecomorbidities and has many
(03:15):
health challenges as well. Sheused to actually attend a day
program at the NationalInstitute on empowerment of
persons with intellectualdisabilities in India, where
they live. And that's a NationalInstitute, specifically for
people with intellectualdisabilities and other
developmental disabilities. Butbecause of COVID, she has not
(03:35):
been attending the program since2020. You know, these are some
of the challenges that I see. Ithink it was very isolating for
my mother in law and my sisterin law during this COVID times.
And that kind of makes us think,you know, what will happen
later, and we all understandlong COVID And we all understand
(03:56):
that people with comorbiditiesare affected. And they both get
COVID at some point of time, andthey do experience some long
COVID symptoms as well. So it'sreally scary for us thinking
about the future of my sister inlaw, especially because of, you
(04:16):
know, lack of future planningopportunities in India, and my
husband being the only sibling,like what would happen to her
later and we are thinking ofways to kind of make sure that
she lives with with us in somecapacity. We are going to be her
(04:39):
future caregivers and the onlycaregivers. So that is
definitely a challenge. And weare trying to navigate and
looking for options, but toreally look at the benefits. My
sister in law, she providescompanionship to my mother in
law helps with her householdchores. Words, and she's very
(04:59):
affectionate, and with, youknow, my mother in law and other
relatives, so she provides a lotof such positive benefits, like
my mother in law is scared tolive alone. So you know, she's a
great support to my mother inlaw. So that way it has, it's a
very rewarding relationship. Andsometimes my husband, and I feel
(05:23):
that, you know, because mysister in law is still living
with my mother in law andproviding that support, we are
less worried about them rightnow. So that's a huge benefit.
Cory Hartman (05:35):
So just I mean, we deal with the same thing, the
future planning, even UnitedStates is not the easiest thing.
My mother in law is with mysister in law, they live
together 24/7 365, my sister inlaw does not as long as I've
known her, go to any programs,she wants to be with a mother
(05:56):
takes care of her mother. So werun into the same issues, long
term planning, estate planning,and things of that nature. My
wife's father, is someone thatwe love very dearly, but would
not allow our sister in law tolive with just because of their
(06:16):
nature of their relationship.
One of the best benefits I findis that my sister was very
honest with me, very honest withme, we have her over for dinner,
she will turn to Me, your pasthas not cooked enough. Can you
know, and it just thatoverwhelming, the honesty part.
And she'll say if she's happyand sad, but I also think that
the biggest relationship I loveto watch is with him and my four
(06:40):
year old daughter, they justhave that bond and connectivity,
but also very worrisome, andbecomes a challenge. Later on.
We'll talk about why becausewhen my daughter starts to read,
it's always well, why can't myaunt read? Why can I do this?
And that? So it's alsonavigating some of those
different challenges in life?
Chris Berstler (07:03):
What are the biggest ways your life has
changed since becoming a seventhlaw?
Sumithra Murthy (07:08):
That's a great question, Chris. Well, my life
definitely has changed a lot.
You know, first of all, I wouldjust like to kind of tell you a
little bit about my background.
So I studied medicine in Indiaand became a physician. But
despite that, you know, I neverunderstood the lived experiences
(07:30):
of living with a person withintellectual disability, like
how Cory mentioned before, butonce you know, I got married, I
saw the struggles, you know, ofmy in laws and providing care to
my sister in law, because of theinadequate supports and
services. There's lack ofknowledge and awareness about
human rights and disabilityrelated laws and policies in
(07:54):
India. And I have alsoexperienced, you know, how mind
loss experienced affiliatesstigma, and discrimination
because of caring for her. And Ibecame more aware of the
challenges and experiences facedby individuals with intellectual
disabilities and familiesfirsthand. And then my husband
(08:16):
and I, we moved over here. Andwe have a daughter, who is also
working in, you know, the sameworld, the disability world, but
I did my master's in publichealth in the US. And then I
joined the Department ofDisability and human development
to work as a project coordinatorand research director. And then
I got my PhD in disabilitystudies. So you see, I wouldn't
(08:40):
have done my PhD in disabilitystudies if I had not met my
sister in law and seen howfamily caregiver gave us
experience, you know, strugglesbecause of lack of formal
supports, and also sometimeslack of informal supports
because of discrimination andstigma. And it has affected us
(09:02):
as family pretty deeply. And asa potential caregiver to my
sister in law, me, my husband,and even my daughter, you know,
we're trying to equip ourselveswith, you know, what knowledge
do we need? Or how do we kind ofraise awareness about caregiving
within our family and advocatefor my sister in law's needs? It
(09:24):
definitely has given me theopportunity to look at lives of
people with intellectualdisabilities from close
quarters, you know, like, and ithelped me develop new
perspectives. So my chi lifereally changed substantially
after I got married and mysister in law, both personally
as well as my career wise, it'sall about, you know, people with
(09:45):
intellectual disabilities, aboutcaregiving for people with
intellectual disabilities.
That's my world now.
Cory Hartman (09:51):
One of the biggest challenges I've had is just
really working with my wife andaccepting the balance of online
versus sip. Live, where sheneeds to go to all of her
doctor's appointments with her,she's involved with every aspect
of our life my wife is involvedin, and how that, that times,
(10:14):
overtake our personal time, ourfamily time, the phone calls
that could last 20 minutes up totwo hours, because he's
hysterical crying aboutsomething. So it's really
affected my life and be moreaccepting of schedule changes,
or say, okay, you know what, yougo do this, you go handle them.
(10:36):
And I'll do this without data,or I'm gonna go do this by
myself while you enjoy this. Sothat's been a big, big change in
my life. So
Chris Berstler (10:46):
what important things about the Civil Law
experience? Do you want siblingsand other family members to
understand? Even? That's
Sumithra Murthy (10:54):
a great question. And I can really tell
from my experience that, youknow, first of all, every family
and every individual is unique,you know, and then every family
has different dynamics, itdepends upon many factors, such
as your socio economic status,you know, whether the person
(11:16):
with disability is a male or afemale, the country that they
live in the kind of socialstatus that they have. And so,
you know, like, it all dependson those different family
dynamics. But one thing that Iwould say, which I think could
be, you know, common to allfamilies is that we need to
(11:37):
approach the relationship withopenness, respect, and a
willingness to really put in theeffort to try and improve the
experiences between the familymembers and also improve the
quality of life. And I think Iagree with Corey, when he says
that, you know, like, he has tokind of understand, if the
schedules need to change or youknow, like, you have to be
(12:00):
pretty open to kind of agreeingto that, and a willingness to
put that effort to be moreunderstanding, you know, while
sibling loss may have differentperspectives, and experiences
about caregiving, for a personwith intellectual disability
than the siblings, like myhusband, obviously, we both
think differently because of theexperiences that we have. But I
(12:21):
think it is really important tolisten to each other's
viewpoints and experiences, toreally have a better
understanding of the situationand dynamics. One thing that is
really important is that I wouldlike to kind of freely
communicate here is that it'snot only a person with
disability, but the caregiversneeds also need to be considered
(12:42):
the overall Family Well Being,whether it's your in laws, your
husband, or you yourself. Andtherefore each and every member
of the family and the extendedfamily as well need to be
mindful of each other's needs,and make sure that everyone's
needs are taken care of. Becausecaregiving itself is very
(13:04):
stressful sometimes, and ittakes a lot out of you. So we
have to make sure that our needsare taken care of, also. And
finally, I think, I would liketo say that sibling loss, they
play an important role insupporting and caring for a
person with intellectualdisability. So I think we as
seventh loss, our opinions andperspectives also need to be
(13:26):
considered in decision makingprocesses, I think we can also
kind of provide a very valuableinput into ways you know, we we
are the people who are insiders,outsiders, you know, we have
both perspectives. We are aninsider, because we are part of
the family. And we see what thestruggles that the families go
(13:49):
through, but as an outsider,because we never had experiences
with disability firsthand beforewe got married. So we have that
outsider perspective, too. So Ithink it's, it's sometimes very
important to take the opinionsof sibling loss also, because we
can come with differentperspectives. It might help
sometimes it or it may not, butI think just being open to those
(14:14):
channels of communication, it'sreally important. I think these
are my two cents.
Cory Hartman (14:19):
I agree with that.
Definitely. And also, if I'm myexperiences, this is new to us.
So good. Yeah, to give us alittle leeway to learn about the
changes in the balance oneverything. So we might move at
a little slower pace, to try tolearn about everybody learn
about what's right, what'swrong. And don't get upset with
(14:40):
us when we ask questions andthen even forget that and make a
mistake, you know, like I knowmy sister in law is a 21st She
wants me to slow down and youknow, so at times I will slow
down to meet her needs. And thatat times all you had that she'll
say but you eat too fast. Soit's making sure that they
(15:00):
understand that, well, I'm usedto eating fast systems the way I
do things, and then she'll say,explain why that's not good. And
then I always do things fast. Soit's really I think, that whole
understanding that, like, Sedar,I am new. I'm new to this every
day is different. He or shedoesn't live with us. We see her
every once in a while. So it'sstill, after all these years,
(15:24):
it's still new. Because littlelittle things that she does,
little things change littlethings that I've changed,
personally, myself areconstantly evolving and growing
our relationship together, Ithink.
Sumithra Murthy (15:39):
Yeah, I think I completely agree with your
career. One thing that I wouldalso like to add here is, you're
like my sister in law, she, youknow, she considers me as a
confidant, sometimes rather thanher brother, she'll kind of
contract some things to meinstead of him because she feels
that I would understand. So Ithink, I think this is also an
opportunity to build that one onone relationship with your
(16:03):
sister in law. And I think it's,it's very rewarding as seven
laws, I think we shouldn't bealways worried about how it
should be. It can be veryrewarding sometimes to and we
have to work towards that.
Cory Hartman (16:17):
Definitely rewarding. I completely agree
with you about that. I had theopportunity to spend a full day
with my sibling while withoutanybody else. And we actually
had a great time together, wewent did something, we painted
pottery, we went for food, andit was just a really great
chance for me to understandwhat's going through her mind
and really just break that, inlaw, stigmatism that goes on?
(16:41):
And it's like, this isn't she'smy sister in law, but she's also
like, my sister, you know, it'slet's take away some of these
words. Just say she's a familymember. And that's what it is,
no matter what disability rightyou like that it's a family
member?
Chris Berstler (16:58):
Do you have any resources to share with any
seven laws that may be listeningright now?
Sumithra Murthy (17:03):
I think one resource is definitely sibling
Leadership Network. I think Ithink even listening to this
podcast and the work that youdo, I think it will offer
information and peer support aswell. And other organizations
that I could think of that couldprovide support to similars
include maybe the arc, there'sthe national Caregiver Alliance.
(17:26):
But I think one most importantthing for any civilize to join a
lot of family support groups.
And, you know, maybe they couldgo to internet to look for
websites for, you know, supportand advocacy organizations.
That's something that they coulddo. Luckily, my sister in law
lives in Hyderabad, India, whichis actually the place where the
(17:47):
National Institute for theempowerment of people with
intellectual disabilities ishoused. And that's a National
Institute for people withintellectual disabilities. And
they, again, they do have a lotof support groups and a lot of
information that they couldprovide. So anyone in India
would kind of, you know, like,guide them to reach out to this
(18:11):
institute, which is also calledthe NIEPID for short. But in
India, also, there have beensome emerging peer support
groups. And I know one calledthe Ashadeep one called the Nayi
Desha. And, and also, there is awhole confederation of family
caregivers, which is called theParivar, which actually means
(18:32):
family in Hindi. And theyprovide a lot of support. And
I'm hoping they provide tosibling loss as well, which I'm
not sure, but there are theseresources. But I think the main
point that I want to say is it'sbetter that sibling loss look
for peer support groups andfamily support groups. That's
(18:52):
where you know, like you notonly get information support,
but you yourself get lots ofemotional support,
Cory Hartman (19:02):
as well. That our Facebook, there is a seven law
Facebook group, which is aclosed group for seven laws that
allow us to actively talk aboutwhat we're dealing with ask
input and suggestions, feedback,there's fortunately it's not
that active. But there are over100 members right now, and
(19:24):
looking to keep that growing,again, more activity as we keep
growing. But it seems to be agreat resource, where people you
know, say this is what I'mdealing with, what employers
suggestions to you guys, or evenjust personally, hey, here's a
picture of me and my siblings,you know, have a great day
today. So it covers all that andit's something that is well
(19:44):
could we reach worldwide andprovide that one on one support
as well. Impact magazine, youknow, is a great resource as
well. My wife wrote an articlefor when we were getting married
about how our family is nowchanging to be a part of this
and all of that. So definitely agreat resource that we say,
Chris Berstler (20:06):
did the pandemic impact your civil experience?
Yeah,
Sumithra Murthy (20:10):
I think I briefly mentioned this before
about how that as part of thechallenge question, but yes, it
did. You know, my sister in law,as I told you, he lives with my
mother in law in India. And sheused to go to this institute
every day for the day program.
And once the COVID, the pandemichit, they stopped the in person
(20:33):
day programs and started withthe online programs, it was very
difficult for them to execute.
And also, my sister in law wouldkind of lose her attention, you
know, and my sister in lawherself had her own
comorbidities, she was diagnosedwith bipolar disorder, so she
(20:54):
would have some of those flareups, or she would end up because
of the medication for thebipolar disorder, she used to
have tremors so online, becausethey couldn't do many of the
other things, they would ask herto kind of saw or stage
something or do something whichyou wouldn't be able to do
because of her tremors. And thenthey would ask questions like,
(21:18):
What's your mother's name?
What's your father's name?
What's your sister, what's yourbrother's name? What's your
sister in law's name, just tokeep their mind active. And at
some point, she got so bored ofthat, and then they will try to
make her do like yoga orsomething, and she wasn't
interested. So that, you know,like, it really caused a major
(21:39):
decline in her, you know, like,day program, you know, skills
and being busy during the day,and she's just at home. Now, I
think that has been a majorimpact. Secondly, you know, we
have been extremely careful withCOVID. There still are, so they
are not able to visit familyfriends. And if they even if
(22:02):
they have to, they have to maskthemselves and go. And my sister
in law is not very comfortablewith masking, she has a hard
time with the masks, they'redefinitely missing out on social
opportunities. They did a lot.
Now they do go to some of theseplaces and events, but they
still wear masks. And after bothof them got COVID, you know,
(22:23):
they were really worried that itwill impact their long term
health. So definitely, thesehave been the impacts. But I
think one of the major impactswas on my mother in law, because
you know, she could not getrespite, like when my sister
would go to the day program,that was the time that my mother
in law had for herself. But shedoesn't have that now. So which
(22:45):
is not good for long term, wellbeing of a person when they
don't get that respect. So thesehave been some of the major
impacts,
Cory Hartman (22:55):
really COVID the pandemic didn't really impact
her that much, you know, ourrelationship because she was a
homebody, she was stay with hermother. And that's what they
would do. You know, who was morevideo calling that was
happening, my wife would orderover, make sure they had
everything that they needed. Soinstead of taking care of two
(23:17):
houses, we were taking care ofthree assets. You talked about
going online and everythingbeing virtual, you know how hard
it was hard to accept a therapyappointment, being in virtual
world because it was so new tothem. And not understanding how
this all works. And just evengetting our mind to these
points, because it's not like,you click a link and you're
right there, you have to log in.
And so I from that aspect, itwas probably the most hardest
(23:41):
part. But other than that itunfortunately, didn't impact us
that much the way ourinteraction was with that.
Chris Berstler (23:51):
Many sibs decide at a young age to avoid finding
a partner so they can focus ontaking care of their siblings
with disabilities. When they getolder. As a sibling law, what
advice might you have to sharewith those sibs?
Sumithra Murthy (24:05):
I think that you know, although caregiving
responsibilities towards theirsiblings, especially with
intellectual disabilities, canbe pretty challenging. But it is
important for siblings to payequal importance to their own
needs and well being. I think,you can be an effective
caregiver only if your own needsare met. And when you have a
fulfilling life, right. It'simportant for siblings to
(24:28):
recognize that, you know,caregiving doesn't have to take
up all your time, they can stillhave their social and personal
relationships, they can stillpursue their own goals. siblings
can ensure reach out forresources and support such as
maybe respite care or personalassistance services, or day
programs, like I said earlier,and also kind of built a strong
(24:51):
informal support system. I thinkthis is really important like
the way Corey said they havethis Facebook group. I think
even siblings should have thisonline peer support and gain
membership to some of thesecaregiver associations. I think
it's really important again, andI want to reiterate that to be a
good caregiver, you need to haveyour own needs met. And you
(25:14):
yourself need to lead afulfilling life. And so I think,
for any siblings who areapprehensive about that, the
only thing is that they shouldlive their own life, but provide
effective caregiving. And forthat to do for both to happen,
your needs need to beprioritized, is what I strongly
(25:37):
believe in.
Cory Hartman (25:39):
Yeah, definitely agree with that. And also, the
biggest things I found veryimportant, or very early on, was
talking to your partner ortalking and being honest with
whoever it potentially may beabout your life and how it
impacts you. And that if thingsbecome very serious, what how
(26:00):
the role is going to transitionfor you and your significant
other. And I think that that'sprobably one of the most helpful
thing was with my wife, youknow, our first day was over
eight hours. And we talked aboutmy children, she talked about
her sisters, she said, if thisgoes anywhere, just so you know,
this is part of who I am. Andthis is, so that honesty piece
(26:23):
is such a big, big part of itreally early on. So you have the
understanding, and you're gonnahit roadblocks, where people are
like, No, I don't want to dealwith this. And then you're gonna
find that person, but don'tblock yourself out from living a
life either. Definitely, thebiggest thing probably,
Sumithra Murthy (26:41):
I think, can I add something to this, and this
is related to India, like, youknow, I understand Korea, like,
you know, you have thisopportunity to talk with your
partner about and being honest.
But then India, sometimes thereis this arranged marriage
system, right, where you may notget that opportunities, and a
lot of families, they get reallyapprehensive about, you know,
finding a match for their, forthemselves, because they have a
(27:04):
sibling with the intellectualdisability, there's a lot of
stigma attached to having asibling with intellectual
disability, especially onDevelopmental Disabilities, or
any disability, as well. Andthat is where I think the
attitudes in the society needsto change, I think there'll be
less apprehensiveness to getmarried, if they know that, you
(27:29):
know, like, it's not sostigmatized, to be a sibling,
who has the person withdisability as a sibling. And
therefore, I think that also isimportant things are changing in
India as well now. And I dounderstand that, you know, right
now, there is more communicationbetween the prospective bride
(27:53):
and groom even before theirwedding. They do need to
communicate with each other. ButI think what one needs to get
assured of is that there areresources out there that we can
kind of Garner to kind ofsupport and I agree with you,
Cory, I think it's veryimportant for the partners also
to understand that, you know,life is not going to be easy,
(28:17):
you will hit roadblocks, thereare a lot of things that you may
not understand. But I think one,a strong support system in the
family and outside resourceswill be very helpful.
Chris Berstler (28:33):
Do you have any advice for any potential Sivan
laws? who are consideringpartnering up with ACIP?
Sumithra Murthy (28:40):
Yeah, I think as I said earlier, there has to
be open and honest communicationbetween, you know, this person
that they might eventually, youknow, marry or you know, live
it. But along with that, I thinkthe potential sibling loss or
the prospect of sibling losshave to kind of look for
(29:01):
resources beforehand, I thinkthey need to understand they
need to read more about how isit to live with a person with a
disability or an intellectualdisability? What kind of
resources are there? What couldbe your role? And what could be
family members role? What couldbe the family dynamics,
understanding what familyquality of life is and how it's
(29:23):
impacted because of a personwith disability? I think if a
person gets into therelationship with this knowledge
beforehand, I think that willkind of help and I think one
thing that I can tell you basedon my experiences, having that
relationship with your in laws,you know, like mother in law and
(29:45):
father in law, to understand howthey raise their child with
intellectual disability, andwhat are their perspectives and
what are their expectationsabout you? I think that's
really, that's really important.
I remember when I got married,my mother in law told me, please
take care of her well, becausethere is no one else. Like, if
you don't take care of her,well, our family will crumble.
(30:08):
And I understood where she'scoming from, because my husband
being the only other sibling,she knew that if I wasn't nice
to my seventh law, the familywill be unhappy. So she and I
understood that from herperspective, so it's very
important to have that kind ofcommunication and understanding
(30:30):
of your parents in law'sperspectives about what they're
expecting from you, about theirchild with intellectual
disability, and how you couldadd value value to the family
dynamics.
Cory Hartman (30:47):
I agree that your education is the biggest part of
everything. From personalexperience, I think a big part
of it was talking with my ownfamily, about what I was going
into and all the support I wouldneed from them as well as other
people. And it came the questionof well, Is there potential, you
(31:09):
guys, when we will get married?
Are you going to have childrenbecause of this being, you know,
something that could behereditary and things of that
nature. Also, don't be afraid tosay, You know what this is, this
sounds like a lot for me.
Because you don't want to getinto something where if it
doesn't work out, you're notjust impacting one person,
(31:30):
you're potentially impacting afamily, that that could have
such a negative and long termlasting impact on because if
they really liked you, and youleave that, you know, that
impact might not be handled?
Well, you know, it could be usedin so many different ways where
it's our it's my fault, thishappier. Yeah. So I did be
honest with both parties, onwhat you think you can manage, I
(31:53):
can't manage, what would you say
Chris Berstler (31:57):
is the best part of being a seventh law,
Sumithra Murthy (31:59):
you know, with my seventh law, with my sister
in law, I do. Like, as I toldyou, she loves jewelry. She
loves, you know, dressing up. SoI really enjoy taking her out to
shopping and you know, buyingthings for her. She enjoys
movies. And so I enjoy, so Ireally enjoy doing what she
(32:22):
likes. But you know, for me,again, the difficult part is
that we live in two differentcontinents. Which is
unfortunate. But that's at somepoint. I think she will come and
live with us in some form andsome capacity, because I don't
(32:42):
know how, based on the visaissues and all that I don't know
what is going to happen, but weknow that we are going to be
potentially future caregiversfor her. And I'm prepared for
that. And I know that it willnot be difficult as it seems,
because I'm going to explore forresources and gaining knowledge.
(33:03):
So So I think the best partcoming back to the question on
best part, I think, I'm surewhenever we are together,
whenever I visit her whenevershe's here, we do have fun,
because I buy things that shelikes. So she's pretty happy.
And then we talk about a lot ofthings and do the things that
(33:23):
she likes, I think so that isrewarding, you know, like seeing
your sister in law. You know,being happy with what you're
doing for her is very rewardingagain. So I think that's the
best part.
Cory Hartman (33:35):
So for me, I would have to say that it was more of
an eye opening experience for meto learn about myself, and make
changes in myself on the way Ihandle different things and be
more open and honest on myabilities, knowing that I cannot
spend a full weekend in a twobedroom apartment with them. But
(33:58):
I could spend a day or two. ButI could also go on a cruise with
them just as long as we havedifferent rooms and understand
that they might not appear atcertain things. So really
teaching me the value.
understanding and acceptance wasa big part of it in a different
way than normally established.
(34:22):
And also just seeing theinteractions between all three
of my girls really also add somuch value to myself and that
just because there's that title,doesn't mean that they can't be
all together and enjoy in life,you know.
Sumithra Murthy (34:43):
Yeah, and I would like to add to that also,
like, you know, when I actuallycompleted my PhD and I
definitely acknowledge my sisterin law for you know, like, I
wouldn't even have thought ofdoing PhD in disability studies
if it was not for my sister inlaw. On my mother in law as
well, because as a family, I sawwhat they were going through. So
(35:06):
I give huge credit to myhusband's family for kind of
initiating me into the world ofdisability studies and
understand their perspectivesclosely.
Chris Berstler (35:16):
Do you have any other words of advice or any
final pieces of information thatyou would like to share with
everyone, before we wrap thingsup?
Sumithra Murthy (35:25):
You know, I would like to just reiterate
what I said. And I could kindof, say it concisely that you
know, your role. If you're asibling, your role in family is
really important. And you candefinitely contribute to family
decision making processmeaningfully. And, you know,
please do not hesitate to reachout for help, either from family
(35:48):
or friends or from any otherformal resources, like Cory
mentioned right now, you know,be a self advocate, advocate for
your needs and your preferences,but also advocate for yourself
in law, you know, so that we canprovide the best possible care.
It's a, it's definitely a veryrewarding process. And, you
(36:08):
know, understanding the lives ofpeople with disabilities and
their families gives heraltogether different
perspective, and it willdefinitely enrich your lives.
Cory Hartman (36:17):
I think that like, again, the big thing I would say
is communication. Communicationis key. Don't be afraid to ask
questions, say how you'refeeling via your own support
system as well. You also have toreally stressed and I wish I did
more, myself is trying to havethat one on one time, with you
said, just because that createsa whole new level of a bond and
(36:42):
relationship, and acceptance andall it really helps. I think
everybody grow in the samefashion. So that would be what I
want people to take away.
Chris Berstler (36:52):
Thank you both so much. This has been great, at
least for me to hear, as I said,so anyone listening any
resources that were mentionedduring the podcast can be found
in the description below. Thankyou again so much for joining us
today. This has been an absolutepleasure.
Sumithra Murthy (37:09):
Thank you for having us. Thank you. And we
very much appreciate the timethat we spent and was nice to
talk about, you know, being aseventh law. There are very few
occasions that we get to talkabout our experiences, so thank
you for the opportunity.
Chris Berstler (37:29):
Find resources, tools and information about the
sibling experience on siblingleadership dot for the sibling
Leadership Network is anonprofit, and we rely on
support from our audience. Findthe donation button on our
homepage and contribute to theever growing sibling 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 in our entirefamilies. Hello, and thank you
(00:23):
for joining us for anotherepisode of the sibling
Leadership Network Podcast.
Today we will be talking aboutseven laws. I am joined by seven
laws Corey Hartman and SumiThoreau. Murthy, thank you so
much for joining us today.
Cory Hartman (00:36):
Thank you for having me. Sure.
Sumithra Murthy (00:38):
It's a pleasure. So
Chris Berstler (00:39):
I'd like to kick things off and just ask you to
please tell us about yourselfand how you came to be ACIP in
law.
Sumithra Murthy (00:46):
So I'm Sumithra Murthy, and I'm the visiting
clinical assistant professor atthe Department of Disability and
Human Development at theUniversity of Illinois at
Chicago. I'm from India, andI've been married for more than
27 years now. So my husband'ssister, my sister in law is an
(01:06):
individual with intellectualdisability. And I think that's
how, like, in India, you know, Iknew my husband before my
wedding. So I knew that he had asister with intellectual
disability. So I was kind ofprepared, when I went into the
family that I would have theseexperiences with my seventh law,
(01:30):
I think that's a briefintroduction about me and how I
came to be a civil law.
Cory Hartman (01:35):
So my name is Cory Harmon, I am a director of
safety and security. I am 35years old and have three amazing
girls age 1715 and four, beforeme and my wife and getting
married in June of 2017. Ireally didn't have much
interactions with those withdisabilities except, you know,
(01:57):
in minor situations. So, whenmeeting my wife, she told me
about having baggage and I said,Well, I have an ex wife and two
kids. So we all have baggage,and she said, Well, mine's a
little different. My sister hasdevelopmental disabilities as
well. And I'm like, okay, youknow, that doesn't make us or
(02:18):
break us and who we are. Sothat's how I became in volved.
In this similar role,
Chris Berstler (02:24):
in your own words, what's it like to be a
seventh law, please share anychallenges or benefits you
experience?
Sumithra Murthy (02:31):
My sister in law lives in India with my
mother in law right now. And mymother in law is almost 78 years
old, as her primary caregiver.
My father in law passed away in2007. And my husband doesn't
have any other siblings. So yousee, because of the lack of
future planning options inIndia, my husband and I do
(02:52):
understand that we would be thepotential future caregivers. So
one of the major challenges isto unit what would happen to my
sister in law, you know, aftermy mother in law, you know,
getting a residency status herewould be a great challenge. My
sister in law has multiplecomorbidities and has many
(03:15):
health challenges as well. Sheused to actually attend a day
program at the NationalInstitute on empowerment of
persons with intellectualdisabilities in India, where
they live. And that's a NationalInstitute, specifically for
people with intellectualdisabilities and other
developmental disabilities. Butbecause of COVID, she has not
(03:35):
been attending the program since2020. You know, these are some
of the challenges that I see. Ithink it was very isolating for
my mother in law and my sisterin law during this COVID times.
And that kind of makes us think,you know, what will happen
later, and we all understandlong COVID And we all understand
(03:56):
that people with comorbiditiesare affected. And they both get
COVID at some point of time, andthey do experience some long
COVID symptoms as well. So it'sreally scary for us thinking
about the future of my sister inlaw, especially because of, you
(04:16):
know, lack of future planningopportunities in India, and my
husband being the only sibling,like what would happen to her
later and we are thinking ofways to kind of make sure that
she lives with with us in somecapacity. We are going to be her
(04:39):
future caregivers and the onlycaregivers. So that is
definitely a challenge. And weare trying to navigate and
looking for options, but toreally look at the benefits. My
sister in law, she providescompanionship to my mother in
law helps with her householdchores. Words, and she's very
(04:59):
affectionate, and with, youknow, my mother in law and other
relatives, so she provides a lotof such positive benefits, like
my mother in law is scared tolive alone. So you know, she's a
great support to my mother inlaw. So that way it has, it's a
very rewarding relationship. Andsometimes my husband, and I feel
(05:23):
that, you know, because mysister in law is still living
with my mother in law andproviding that support, we are
less worried about them rightnow. So that's a huge benefit.
Cory Hartman (05:35):
So just I mean, we deal with the same thing, the
future planning, even UnitedStates is not the easiest thing.
My mother in law is with mysister in law, they live
together 24/7 365, my sister inlaw does not as long as I've
known her, go to any programs,she wants to be with a mother
(05:56):
takes care of her mother. So werun into the same issues, long
term planning, estate planning,and things of that nature. My
wife's father, is someone thatwe love very dearly, but would
not allow our sister in law tolive with just because of their
(06:16):
nature of their relationship.
One of the best benefits I findis that my sister was very
honest with me, very honest withme, we have her over for dinner,
she will turn to Me, your pasthas not cooked enough. Can you
know, and it just thatoverwhelming, the honesty part.
And she'll say if she's happyand sad, but I also think that
the biggest relationship I loveto watch is with him and my four
(06:40):
year old daughter, they justhave that bond and connectivity,
but also very worrisome, andbecomes a challenge. Later on.
We'll talk about why becausewhen my daughter starts to read,
it's always well, why can't myaunt read? Why can I do this?
And that? So it's alsonavigating some of those
different challenges in life?
Chris Berstler (07:03):
What are the biggest ways your life has
changed since becoming a seventhlaw?
Sumithra Murthy (07:08):
That's a great question, Chris. Well, my life
definitely has changed a lot.
You know, first of all, I wouldjust like to kind of tell you a
little bit about my background.
So I studied medicine in Indiaand became a physician. But
despite that, you know, I neverunderstood the lived experiences
(07:30):
of living with a person withintellectual disability, like
how Cory mentioned before, butonce you know, I got married, I
saw the struggles, you know, ofmy in laws and providing care to
my sister in law, because of theinadequate supports and
services. There's lack ofknowledge and awareness about
human rights and disabilityrelated laws and policies in
(07:54):
India. And I have alsoexperienced, you know, how mind
loss experienced affiliatesstigma, and discrimination
because of caring for her. And Ibecame more aware of the
challenges and experiences facedby individuals with intellectual
disabilities and familiesfirsthand. And then my husband
(08:16):
and I, we moved over here. Andwe have a daughter, who is also
working in, you know, the sameworld, the disability world, but
I did my master's in publichealth in the US. And then I
joined the Department ofDisability and human development
to work as a project coordinatorand research director. And then
I got my PhD in disabilitystudies. So you see, I wouldn't
(08:40):
have done my PhD in disabilitystudies if I had not met my
sister in law and seen howfamily caregiver gave us
experience, you know, strugglesbecause of lack of formal
supports, and also sometimeslack of informal supports
because of discrimination andstigma. And it has affected us
(09:02):
as family pretty deeply. And asa potential caregiver to my
sister in law, me, my husband,and even my daughter, you know,
we're trying to equip ourselveswith, you know, what knowledge
do we need? Or how do we kind ofraise awareness about caregiving
within our family and advocatefor my sister in law's needs? It
(09:24):
definitely has given me theopportunity to look at lives of
people with intellectualdisabilities from close
quarters, you know, like, and ithelped me develop new
perspectives. So my chi lifereally changed substantially
after I got married and mysister in law, both personally
as well as my career wise, it'sall about, you know, people with
(09:45):
intellectual disabilities, aboutcaregiving for people with
intellectual disabilities.
That's my world now.
Cory Hartman (09:51):
One of the biggest challenges I've had is just
really working with my wife andaccepting the balance of online
versus sip. Live, where sheneeds to go to all of her
doctor's appointments with her,she's involved with every aspect
of our life my wife is involvedin, and how that, that times,
(10:14):
overtake our personal time, ourfamily time, the phone calls
that could last 20 minutes up totwo hours, because he's
hysterical crying aboutsomething. So it's really
affected my life and be moreaccepting of schedule changes,
or say, okay, you know what, yougo do this, you go handle them.
(10:36):
And I'll do this without data,or I'm gonna go do this by
myself while you enjoy this. Sothat's been a big, big change in
my life. So
Chris Berstler (10:46):
what important things about the Civil Law
experience? Do you want siblingsand other family members to
understand? Even? That's
Sumithra Murthy (10:54):
a great question. And I can really tell
from my experience that, youknow, first of all, every family
and every individual is unique,you know, and then every family
has different dynamics, itdepends upon many factors, such
as your socio economic status,you know, whether the person
(11:16):
with disability is a male or afemale, the country that they
live in the kind of socialstatus that they have. And so,
you know, like, it all dependson those different family
dynamics. But one thing that Iwould say, which I think could
be, you know, common to allfamilies is that we need to
(11:37):
approach the relationship withopenness, respect, and a
willingness to really put in theeffort to try and improve the
experiences between the familymembers and also improve the
quality of life. And I think Iagree with Corey, when he says
that, you know, like, he has tokind of understand, if the
schedules need to change or youknow, like, you have to be
(12:00):
pretty open to kind of agreeingto that, and a willingness to
put that effort to be moreunderstanding, you know, while
sibling loss may have differentperspectives, and experiences
about caregiving, for a personwith intellectual disability
than the siblings, like myhusband, obviously, we both
think differently because of theexperiences that we have. But I
(12:21):
think it is really important tolisten to each other's
viewpoints and experiences, toreally have a better
understanding of the situationand dynamics. One thing that is
really important is that I wouldlike to kind of freely
communicate here is that it'snot only a person with
disability, but the caregiversneeds also need to be considered
(12:42):
the overall Family Well Being,whether it's your in laws, your
husband, or you yourself. Andtherefore each and every member
of the family and the extendedfamily as well need to be
mindful of each other's needs,and make sure that everyone's
needs are taken care of. Becausecaregiving itself is very
(13:04):
stressful sometimes, and ittakes a lot out of you. So we
have to make sure that our needsare taken care of, also. And
finally, I think, I would liketo say that sibling loss, they
play an important role insupporting and caring for a
person with intellectualdisability. So I think we as
seventh loss, our opinions andperspectives also need to be
(13:26):
considered in decision makingprocesses, I think we can also
kind of provide a very valuableinput into ways you know, we we
are the people who are insiders,outsiders, you know, we have
both perspectives. We are aninsider, because we are part of
the family. And we see what thestruggles that the families go
(13:49):
through, but as an outsider,because we never had experiences
with disability firsthand beforewe got married. So we have that
outsider perspective, too. So Ithink it's, it's sometimes very
important to take the opinionsof sibling loss also, because we
can come with differentperspectives. It might help
sometimes it or it may not, butI think just being open to those
(14:14):
channels of communication, it'sreally important. I think these
are my two cents.
Cory Hartman (14:19):
I agree with that.
Definitely. And also, if I'm myexperiences, this is new to us.
So good. Yeah, to give us alittle leeway to learn about the
changes in the balance oneverything. So we might move at
a little slower pace, to try tolearn about everybody learn
about what's right, what'swrong. And don't get upset with
(14:40):
us when we ask questions andthen even forget that and make a
mistake, you know, like I knowmy sister in law is a 21st She
wants me to slow down and youknow, so at times I will slow
down to meet her needs. And thatat times all you had that she'll
say but you eat too fast. Soit's making sure that they
(15:00):
understand that, well, I'm usedto eating fast systems the way I
do things, and then she'll say,explain why that's not good. And
then I always do things fast. Soit's really I think, that whole
understanding that, like, Sedar,I am new. I'm new to this every
day is different. He or shedoesn't live with us. We see her
every once in a while. So it'sstill, after all these years,
(15:24):
it's still new. Because littlelittle things that she does,
little things change littlethings that I've changed,
personally, myself areconstantly evolving and growing
our relationship together, Ithink.
Sumithra Murthy (15:39):
Yeah, I think I completely agree with your
career. One thing that I wouldalso like to add here is, you're
like my sister in law, she, youknow, she considers me as a
confidant, sometimes rather thanher brother, she'll kind of
contract some things to meinstead of him because she feels
that I would understand. So Ithink, I think this is also an
opportunity to build that one onone relationship with your
(16:03):
sister in law. And I think it's,it's very rewarding as seven
laws, I think we shouldn't bealways worried about how it
should be. It can be veryrewarding sometimes to and we
have to work towards that.
Cory Hartman (16:17):
Definitely rewarding. I completely agree
with you about that. I had theopportunity to spend a full day
with my sibling while withoutanybody else. And we actually
had a great time together, wewent did something, we painted
pottery, we went for food, andit was just a really great
chance for me to understandwhat's going through her mind
and really just break that, inlaw, stigmatism that goes on?
(16:41):
And it's like, this isn't she'smy sister in law, but she's also
like, my sister, you know, it'slet's take away some of these
words. Just say she's a familymember. And that's what it is,
no matter what disability rightyou like that it's a family
member?
Chris Berstler (16:58):
Do you have any resources to share with any
seven laws that may be listeningright now?
Sumithra Murthy (17:03):
I think one resource is definitely sibling
Leadership Network. I think Ithink even listening to this
podcast and the work that youdo, I think it will offer
information and peer support aswell. And other organizations
that I could think of that couldprovide support to similars
include maybe the arc, there'sthe national Caregiver Alliance.
(17:26):
But I think one most importantthing for any civilize to join a
lot of family support groups.
And, you know, maybe they couldgo to internet to look for
websites for, you know, supportand advocacy organizations.
That's something that they coulddo. Luckily, my sister in law
lives in Hyderabad, India, whichis actually the place where the
(17:47):
National Institute for theempowerment of people with
intellectual disabilities ishoused. And that's a National
Institute for people withintellectual disabilities. And
they, again, they do have a lotof support groups and a lot of
information that they couldprovide. So anyone in India
would kind of, you know, like,guide them to reach out to this
(18:11):
institute, which is also calledthe NIEPID for short. But in
India, also, there have beensome emerging peer support
groups. And I know one calledthe Ashadeep one called the Nayi
Desha. And, and also, there is awhole confederation of family
caregivers, which is called theParivar, which actually means
(18:32):
family in Hindi. And theyprovide a lot of support. And
I'm hoping they provide tosibling loss as well, which I'm
not sure, but there are theseresources. But I think the main
point that I want to say is it'sbetter that sibling loss look
for peer support groups andfamily support groups. That's
(18:52):
where you know, like you notonly get information support,
but you yourself get lots ofemotional support,
Cory Hartman (19:02):
as well. That our Facebook, there is a seven law
Facebook group, which is aclosed group for seven laws that
allow us to actively talk aboutwhat we're dealing with ask
input and suggestions, feedback,there's fortunately it's not
that active. But there are over100 members right now, and
(19:24):
looking to keep that growing,again, more activity as we keep
growing. But it seems to be agreat resource, where people you
know, say this is what I'mdealing with, what employers
suggestions to you guys, or evenjust personally, hey, here's a
picture of me and my siblings,you know, have a great day
today. So it covers all that andit's something that is well
(19:44):
could we reach worldwide andprovide that one on one support
as well. Impact magazine, youknow, is a great resource as
well. My wife wrote an articlefor when we were getting married
about how our family is nowchanging to be a part of this
and all of that. So definitely agreat resource that we say,
Chris Berstler (20:06):
did the pandemic impact your civil experience?
Yeah,
Sumithra Murthy (20:10):
I think I briefly mentioned this before
about how that as part of thechallenge question, but yes, it
did. You know, my sister in law,as I told you, he lives with my
mother in law in India. And sheused to go to this institute
every day for the day program.
And once the COVID, the pandemichit, they stopped the in person
(20:33):
day programs and started withthe online programs, it was very
difficult for them to execute.
And also, my sister in law wouldkind of lose her attention, you
know, and my sister in lawherself had her own
comorbidities, she was diagnosedwith bipolar disorder, so she
(20:54):
would have some of those flareups, or she would end up because
of the medication for thebipolar disorder, she used to
have tremors so online, becausethey couldn't do many of the
other things, they would ask herto kind of saw or stage
something or do something whichyou wouldn't be able to do
because of her tremors. And thenthey would ask questions like,
(21:18):
What's your mother's name?
What's your father's name?
What's your sister, what's yourbrother's name? What's your
sister in law's name, just tokeep their mind active. And at
some point, she got so bored ofthat, and then they will try to
make her do like yoga orsomething, and she wasn't
interested. So that, you know,like, it really caused a major
(21:39):
decline in her, you know, like,day program, you know, skills
and being busy during the day,and she's just at home. Now, I
think that has been a majorimpact. Secondly, you know, we
have been extremely careful withCOVID. There still are, so they
are not able to visit familyfriends. And if they even if
(22:02):
they have to, they have to maskthemselves and go. And my sister
in law is not very comfortablewith masking, she has a hard
time with the masks, they'redefinitely missing out on social
opportunities. They did a lot.
Now they do go to some of theseplaces and events, but they
still wear masks. And after bothof them got COVID, you know,
(22:23):
they were really worried that itwill impact their long term
health. So definitely, thesehave been the impacts. But I
think one of the major impactswas on my mother in law, because
you know, she could not getrespite, like when my sister
would go to the day program,that was the time that my mother
in law had for herself. But shedoesn't have that now. So which
(22:45):
is not good for long term, wellbeing of a person when they
don't get that respect. So thesehave been some of the major
impacts,
Cory Hartman (22:55):
really COVID the pandemic didn't really impact
her that much, you know, ourrelationship because she was a
homebody, she was stay with hermother. And that's what they
would do. You know, who was morevideo calling that was
happening, my wife would orderover, make sure they had
everything that they needed. Soinstead of taking care of two
(23:17):
houses, we were taking care ofthree assets. You talked about
going online and everythingbeing virtual, you know how hard
it was hard to accept a therapyappointment, being in virtual
world because it was so new tothem. And not understanding how
this all works. And just evengetting our mind to these
points, because it's not like,you click a link and you're
right there, you have to log in.
And so I from that aspect, itwas probably the most hardest
(23:41):
part. But other than that itunfortunately, didn't impact us
that much the way ourinteraction was with that.
Chris Berstler (23:51):
Many sibs decide at a young age to avoid finding
a partner so they can focus ontaking care of their siblings
with disabilities. When they getolder. As a sibling law, what
advice might you have to sharewith those sibs?
Sumithra Murthy (24:05):
I think that you know, although caregiving
responsibilities towards theirsiblings, especially with
intellectual disabilities, canbe pretty challenging. But it is
important for siblings to payequal importance to their own
needs and well being. I think,you can be an effective
caregiver only if your own needsare met. And when you have a
fulfilling life, right. It'simportant for siblings to
(24:28):
recognize that, you know,caregiving doesn't have to take
up all your time, they can stillhave their social and personal
relationships, they can stillpursue their own goals. siblings
can ensure reach out forresources and support such as
maybe respite care or personalassistance services, or day
programs, like I said earlier,and also kind of built a strong
(24:51):
informal support system. I thinkthis is really important like
the way Corey said they havethis Facebook group. I think
even siblings should have thisonline peer support and gain
membership to some of thesecaregiver associations. I think
it's really important again, andI want to reiterate that to be a
good caregiver, you need to haveyour own needs met. And you
(25:14):
yourself need to lead afulfilling life. And so I think,
for any siblings who areapprehensive about that, the
only thing is that they shouldlive their own life, but provide
effective caregiving. And forthat to do for both to happen,
your needs need to beprioritized, is what I strongly
(25:37):
believe in.
Cory Hartman (25:39):
Yeah, definitely agree with that. And also, the
biggest things I found veryimportant, or very early on, was
talking to your partner ortalking and being honest with
whoever it potentially may beabout your life and how it
impacts you. And that if thingsbecome very serious, what how
(26:00):
the role is going to transitionfor you and your significant
other. And I think that that'sprobably one of the most helpful
thing was with my wife, youknow, our first day was over
eight hours. And we talked aboutmy children, she talked about
her sisters, she said, if thisgoes anywhere, just so you know,
this is part of who I am. Andthis is, so that honesty piece
(26:23):
is such a big, big part of itreally early on. So you have the
understanding, and you're gonnahit roadblocks, where people are
like, No, I don't want to dealwith this. And then you're gonna
find that person, but don'tblock yourself out from living a
life either. Definitely, thebiggest thing probably,
Sumithra Murthy (26:41):
I think, can I add something to this, and this
is related to India, like, youknow, I understand Korea, like,
you know, you have thisopportunity to talk with your
partner about and being honest.
But then India, sometimes thereis this arranged marriage
system, right, where you may notget that opportunities, and a
lot of families, they get reallyapprehensive about, you know,
finding a match for their, forthemselves, because they have a
(27:04):
sibling with the intellectualdisability, there's a lot of
stigma attached to having asibling with intellectual
disability, especially onDevelopmental Disabilities, or
any disability, as well. Andthat is where I think the
attitudes in the society needsto change, I think there'll be
less apprehensiveness to getmarried, if they know that, you
(27:29):
know, like, it's not sostigmatized, to be a sibling,
who has the person withdisability as a sibling. And
therefore, I think that also isimportant things are changing in
India as well now. And I dounderstand that, you know, right
now, there is more communicationbetween the prospective bride
(27:53):
and groom even before theirwedding. They do need to
communicate with each other. ButI think what one needs to get
assured of is that there areresources out there that we can
kind of Garner to kind ofsupport and I agree with you,
Cory, I think it's veryimportant for the partners also
to understand that, you know,life is not going to be easy,
(28:17):
you will hit roadblocks, thereare a lot of things that you may
not understand. But I think one,a strong support system in the
family and outside resourceswill be very helpful.
Chris Berstler (28:33):
Do you have any advice for any potential Sivan
laws? who are consideringpartnering up with ACIP?
Sumithra Murthy (28:40):
Yeah, I think as I said earlier, there has to
be open and honest communicationbetween, you know, this person
that they might eventually, youknow, marry or you know, live
it. But along with that, I thinkthe potential sibling loss or
the prospect of sibling losshave to kind of look for
(29:01):
resources beforehand, I thinkthey need to understand they
need to read more about how isit to live with a person with a
disability or an intellectualdisability? What kind of
resources are there? What couldbe your role? And what could be
family members role? What couldbe the family dynamics,
understanding what familyquality of life is and how it's
(29:23):
impacted because of a personwith disability? I think if a
person gets into therelationship with this knowledge
beforehand, I think that willkind of help and I think one
thing that I can tell you basedon my experiences, having that
relationship with your in laws,you know, like mother in law and
(29:45):
father in law, to understand howthey raise their child with
intellectual disability, andwhat are their perspectives and
what are their expectationsabout you? I think that's
really, that's really important.
I remember when I got married,my mother in law told me, please
take care of her well, becausethere is no one else. Like, if
you don't take care of her,well, our family will crumble.
(30:08):
And I understood where she'scoming from, because my husband
being the only other sibling,she knew that if I wasn't nice
to my seventh law, the familywill be unhappy. So she and I
understood that from herperspective, so it's very
important to have that kind ofcommunication and understanding
(30:30):
of your parents in law'sperspectives about what they're
expecting from you, about theirchild with intellectual
disability, and how you couldadd value value to the family
dynamics.
Cory Hartman (30:47):
I agree that your education is the biggest part of
everything. From personalexperience, I think a big part
of it was talking with my ownfamily, about what I was going
into and all the support I wouldneed from them as well as other
people. And it came the questionof well, Is there potential, you
(31:09):
guys, when we will get married?
Are you going to have childrenbecause of this being, you know,
something that could behereditary and things of that
nature. Also, don't be afraid tosay, You know what this is, this
sounds like a lot for me.
Because you don't want to getinto something where if it
doesn't work out, you're notjust impacting one person,
(31:30):
you're potentially impacting afamily, that that could have
such a negative and long termlasting impact on because if
they really liked you, and youleave that, you know, that
impact might not be handled?
Well, you know, it could be usedin so many different ways where
it's our it's my fault, thishappier. Yeah. So I did be
honest with both parties, onwhat you think you can manage, I
(31:53):
can't manage, what would you say
Chris Berstler (31:57):
is the best part of being a seventh law,
Sumithra Murthy (31:59):
you know, with my seventh law, with my sister
in law, I do. Like, as I toldyou, she loves jewelry. She
loves, you know, dressing up. SoI really enjoy taking her out to
shopping and you know, buyingthings for her. She enjoys
movies. And so I enjoy, so Ireally enjoy doing what she
(32:22):
likes. But you know, for me,again, the difficult part is
that we live in two differentcontinents. Which is
unfortunate. But that's at somepoint. I think she will come and
live with us in some form andsome capacity, because I don't
(32:42):
know how, based on the visaissues and all that I don't know
what is going to happen, but weknow that we are going to be
potentially future caregiversfor her. And I'm prepared for
that. And I know that it willnot be difficult as it seems,
because I'm going to explore forresources and gaining knowledge.
(33:03):
So So I think the best partcoming back to the question on
best part, I think, I'm surewhenever we are together,
whenever I visit her whenevershe's here, we do have fun,
because I buy things that shelikes. So she's pretty happy.
And then we talk about a lot ofthings and do the things that
(33:23):
she likes, I think so that isrewarding, you know, like seeing
your sister in law. You know,being happy with what you're
doing for her is very rewardingagain. So I think that's the
best part.
Cory Hartman (33:35):
So for me, I would have to say that it was more of
an eye opening experience for meto learn about myself, and make
changes in myself on the way Ihandle different things and be
more open and honest on myabilities, knowing that I cannot
spend a full weekend in a twobedroom apartment with them. But
(33:58):
I could spend a day or two. ButI could also go on a cruise with
them just as long as we havedifferent rooms and understand
that they might not appear atcertain things. So really
teaching me the value.
understanding and acceptance wasa big part of it in a different
way than normally established.
(34:22):
And also just seeing theinteractions between all three
of my girls really also add somuch value to myself and that
just because there's that title,doesn't mean that they can't be
all together and enjoy in life,you know.
Sumithra Murthy (34:43):
Yeah, and I would like to add to that also,
like, you know, when I actuallycompleted my PhD and I
definitely acknowledge my sisterin law for you know, like, I
wouldn't even have thought ofdoing PhD in disability studies
if it was not for my sister inlaw. On my mother in law as
well, because as a family, I sawwhat they were going through. So
(35:06):
I give huge credit to myhusband's family for kind of
initiating me into the world ofdisability studies and
understand their perspectivesclosely.
Chris Berstler (35:16):
Do you have any other words of advice or any
final pieces of information thatyou would like to share with
everyone, before we wrap thingsup?
Sumithra Murthy (35:25):
You know, I would like to just reiterate
what I said. And I could kindof, say it concisely that you
know, your role. If you're asibling, your role in family is
really important. And you candefinitely contribute to family
decision making processmeaningfully. And, you know,
please do not hesitate to reachout for help, either from family
(35:48):
or friends or from any otherformal resources, like Cory
mentioned right now, you know,be a self advocate, advocate for
your needs and your preferences,but also advocate for yourself
in law, you know, so that we canprovide the best possible care.
It's a, it's definitely a veryrewarding process. And, you
(36:08):
know, understanding the lives ofpeople with disabilities and
their families gives heraltogether different
perspective, and it willdefinitely enrich your lives.
Cory Hartman (36:17):
I think that like, again, the big thing I would say
is communication. Communicationis key. Don't be afraid to ask
questions, say how you'refeeling via your own support
system as well. You also have toreally stressed and I wish I did
more, myself is trying to havethat one on one time, with you
said, just because that createsa whole new level of a bond and
(36:42):
relationship, and acceptance andall it really helps. I think
everybody grow in the samefashion. So that would be what I
want people to take away.
Chris Berstler (36:52):
Thank you both so much. This has been great, at
least for me to hear, as I said,so anyone listening any
resources that were mentionedduring the podcast can be found
in the description below. Thankyou again so much for joining us
today. This has been an absolutepleasure.
Sumithra Murthy (37:09):
Thank you for having us. Thank you. And we
very much appreciate the timethat we spent and was nice to
talk about, you know, being aseventh law. There are very few
occasions that we get to talkabout our experiences, so thank
you for the opportunity.
Chris Berstler (37:29):
Find resources, tools and information about the
sibling experience on siblingleadership dot for the sibling
Leadership Network is anonprofit, and we rely on
support from our audience. Findthe donation button on our
homepage and contribute to theever growing sibling movement.
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