May 16, 2022 • 42 mins
In this episode we discuss spirituality for sibs and supports for our siblings with disabilities to participate in faith-based communities. Our guests are Dr. Sarah Hall from the Institute on Community Integration, University of Minnesota and Texas A&M doctoral student Sehrish Shikarpurya.
Access the transcript of this episode here.
Highlights:
- “Her dedication is inspiring for me and kind of uplifting in my own faith journey.” -Sehrish Shikarpurya
- “As siblings we can say, he's going to make noise and that's OK.” -Dr. Sarah Hall
- “To have another layer of exclusivity is really hard to think about and manage.” -Sehrish Shikarpurya
- “How do you support someone with a faith different than your own?” -Dr. Sarah Hall
- “It's OK to have a journey with your sibling or just a journey on your own.” -Dr. Sarah Hall
In this episode:
- Introductions: 00:00:48
- Being a Sib & Spirituality: 00:02:38
- Challenges in Faith-Based Communities 00:5:43
- Benefits of Spirituality: 00:11:51
- Supporting Our Siblings: 00:15:09
- Resources: 00:18:17
- Identity & Spirituality: 00:21:46
- Lacking Resources: 00:24:56
- How to Influence Change: 00:30:35
- Impact of the Pandemic: 00:36:25
- Words of Encouragement: 00:39:06
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Chris Berstler (00:02):
Welcome to the sibling Leadership Network
podcast. The sibling LeadershipNetwork is a national nonprofit
whose mission is to providesiblings of individuals with
disabilities the informationsupport and tools to advocate
with their brothers and sistersand to promote the issues
important to us and our entirefamilies.
(00:23):
Hello, and thank you for tuningin for another episode of the
SLN Podcast. Today we will bediscussing spirituality for
sibs, and supports for oursiblings with disabilities to
participate in faith basedcommunities. I would like to
welcome our guests Dr. SarahHall from the Institute of
community integration Universityof Minnesota and Texas a&m
doctoral students, SehrishShikarpurya. Thank you for
(00:45):
joining us today.
Sarah Hall (00:47):
No, thank you for having us.
Chris Berstler (00:48):
I'd like to just start off and ask you to please
introduce yourselves andanything important about
yourself. So you'd likeeverybody to know.
Sarah Hall (00:55):
Okay. Well, I am Sarah Hall. And like you said,
I'm from the Institute onCommunity Integration. And I am
a researcher there. I did kindof grow up in different
disability fields where I was ahigh school special education
teacher. I was a professor formany years in special education,
and now I get to do research andother projects. So I do have
(01:19):
one, I have two brothers, butone has multiple disabilities.
And they're more significant, Iguess people would say, to where
he has autism, cerebral palsy,Down syndrome, little epilepsy,
you know, it's just whatever.
He's just Charlie.
Sehrish Shikarpurya (01:36):
Thanks, Sarah for sharing. Hi, everyone.
My name is Sehrish. I'm a thirdyear doctoral student at Texas
a&m. Specifically, I'mresearching transition to
adulthood outcomes for raciallyminoritized populations living
in the United States, focusingon what are some of their
strengths, and what are some ofthe ways in which they navigate
the transition world, a worldthat typically hasn't been
(01:59):
designed for them or by them. Iam a sibling of Shazia, who is
my little sister, little as inshe's only one year younger than
me. She was diagnosed withautism in middle school, which
is quite late. And it could bedue to a that she is a female
(02:19):
and a lot of the symptoms orsome technology we just didn't
identify or think about earlyon, she is currently working.
And I'll go into my sisterlater, I feel like I start with
her. And then that's kind ofwhere I go. So that's a little
bit about me.
Chris Berstler (02:38):
Thank you very much for sharing, How has being
a sibling of an individual witha disability shaped your
spiritual journey andperspective.
Sarah Hall (02:46):
I think for me, I've, I've noticed the gifts
that other people have moreoften and you know, some of
those hidden gifts are the onesthat are smaller, but are really
impactful. Because I've seenlike in my brother, how how,
like the light just kind ofshines from him or he'll sing or
he'll he's very empathetic. Butnot everyone knows that you
(03:06):
can't see it. And I think I'vebeen more comfortable with
different ways of worshipping.
Just because I see my brotherdoing it different. I'm okay
with others doing a differentI'm okay with hearing things or
seeing things different ifsomebody's moving a lot. And so
I think it's just having a morecomfort in a variety of
approaches really, and I thinkeven felt more of a call to
(03:28):
service and I don't know if it'sbecause of my brother and my our
situation or just who I am. Ilike to do the serving part I
enjoy like doing hard work.
Sometimes I'm okay with theboring work, but just to support
others and work alongside them.
Sehrish Shikarpurya (03:47):
You know, my journey similar. And my
experiences have been similar toDr. halls as well and that I
think my sibling and I'm Iidentify as a Muslim. And so
within my mosque space, I'veseen my sister really thrive.
And some of the ways in whichshe decides to pray or decides
to call on to Allah, I've seenher sort of thrive in that
(04:10):
space. And I think it's kind ofinspired me to work within my
mosque as well. I do a lot ofwork with our special needs that
we call our special needs.
Community, individuals withdisabilities and they range from
like ages three all the way upto like 6570 However, I think
for me, I've also become overthe years as a teenager, I was
(04:32):
very reluctant to work in themosques space because I saw a
lot of exclusionary practiceswith my sister, and others and I
kind of rejected religion a lotfor quite a while because I
thought it wasn't a space whereme and my family could thrive or
felt like we belonged eventhough we prayed every day for
the belongingness and being kindto our neighbors and all those
(04:55):
other things. However, I thinkover time her resilience has
really inspired me to continuebeing part of a faith community.
I think despite of the thingsthat she gets told, despite the
looks that she gets, despite allof those things, I think she's
still there every day. Forexample, this is a holy month
for us. It's Ramadan. And wehave like a night of power that
(05:17):
we call where we pray the wholenight. And so she's leaving work
early, to go pray all night, andthen work the next day, while
knowing that when she praysreally loudly, people will sort
of come to her and tell her tostop being loud, or to stop
moving her body too much, orstop using the rosary beads too
loud. So like her dedication isinspiring for me and kind of
(05:38):
uplifting me in my own faithjourney as well.
Chris Berstler (05:43):
Awesome. Thank you both for sharing. What
challenges do individuals withdisabilities face within faith
based communities?
Sarah Hall (05:50):
Well, you were saying just dove right into some
of the things that initially Ithink about, like one of the
initial challenges I think aboutare those looks, those comments,
those things. And as a family,how much tolerance do you have
for that kind of? It feels likea push back really, to you? So I
think it's like, initially thatfamily's comfort level in being
(06:14):
in the area. And then, you know,is there a place for you there?
Not that there has to be aspecial place. But is there any
place for you there? When I wasvery young, we had to switch
churches, I grew up in theMethodist church, my family's
Christian. And when my brothergot old enough, which may have
(06:37):
been around preschool,kindergarten, somewhere around
there, his differences weredifferent enough where they
didn't know what to do. And sothey they told him, he couldn't
come. And so we had to changechurches. And so for me, like,
is there a place? And I know alot of people talk about, like,
oh, being inclusive is the bestfor everyone. But right now, I
(07:00):
think having like that, like acontinuum of places to where,
where does the family, wheredoes the person feel
comfortable, because I thinkthat's such a challenge, where
it's, we don't have that place.
And I remember when I wasyounger, and I went to a
different church, I helped startlike a friendship ministries
program for people with andwithout disabilities. And so we
(07:22):
had people come to church, whohad never been to our church
before. And they met our churchmembers and started, and I was
like, This is great. But in myhead there was that back and
forth of was it inclusiveenough, you know, my plan was to
say, Okay, you start here, andthen you can get more involved.
But they loved it, they had aplace. And so I think that was
something that was and still isa barrier for a lot of people.
(07:47):
And also sitting quiet for solong. Who can do that without
moving without coughing withoutlooking around? Ah, that's so
difficult to do.
Sehrish Shikarpurya (08:01):
Ya, you know, I'm very, very similar in
my religious space, as well. Andit just, I think, I think the
biggest challenge has to be thetop down, for me, particularly,
is leadership. So the way ourmosques works is that there's
different leaders that aredesignated towards each mosque.
(08:22):
And so like, recently, Iremember I got a call from one
of the leaders saying, thischild is making too many verbal,
loud sounds, and everyone'scoming to me and saying, We
should put this child in theback, we should put this and
he's like, I don't want to dothat, because he himself thinks
he's being inclusive. But at thesame time, he keeps calling the
(08:42):
family to tell them that theirchild is loud. And to the point
where the fam, every time hecalls a family, the mom picks up
and says, Are you calling mebecause my kid was loud again.
And you know, it just reallymakes me think about what what
are we doing from the top downin terms of preventing these
challenges? Why is it that theindividual who's loud, is told
(09:03):
to stop doing that, but thecongregation members aren't
actually invited to be moreinclusive or be like, hey,
that's okay. I mean, the elderlyare quite loud within our mosque
as well. And nobody really tellsthem to stop. people's phones go
off, and no one really cares. Sowhy is it that this individual
is being pushed by society aswell as the inclusive mosque
(09:24):
space to be conforming to acertain ideal? And so I think
that's one of the challengesthat I've really had going back
and forth is that we push forinclusion from the bottom up,
and then at the top level, it'skind of like, well, it is what
it is, or sometimes we don'thave those individuals here,
which is not true. I know forus, a lot of the stereotype is
(09:47):
also very evident within ourmosque and the feelings that we
get about people withdisabilities is a lot of stigma
attached to it. A lot of parentsand even my mom sometimes like
they'll tell me like, I feelembarrassed. cuz people look at
me, I feel embarrassed becausepeople want to hush my kid, I
feel embarrassed because, likepeople have gone up to my sister
(10:08):
and told her things, but my momwas sometimes I think reluctant
to defend her because she wantedher to step up and do that. But
at the same time, they don'twant to be identified as a
person with a disability,because there's a lot of hush
hush, like, there's somethingoff, we don't know what it is,
we will not label it. But wewill just kind of be hush about
(10:29):
it and not say that it's adisability or like, say that
it's something that we'rethinking about or continuing to
work on. So that's kind of beenmy challenge as well.
Sarah Hall (10:41):
Yeah, I think the understanding of others have,
that it's okay to make noises. Iwas, I was actually at the gym
last night, and there wassomebody who, I believe had
autism, and making loudernoises. My first fear was, don't
take him out. You know, don'tget him, you know, don't take
him to the parking lot. Like,let him stay here. Let people
(11:02):
get used to hearing things, letpeople be okay with him. He was
sitting on a mat, rocking backand forth bouncing off of a ball
that was behind him. Let peoplebe okay with that, the more they
see him as a person. And themore others people like they
interact with them, like, that'sgoing to help people become
included.
Sehrish Shikarpurya (11:21):
Yeah, absolutely. And I think
sometimes the challenge is alsomaybe the fear of backlash. And
I think if you're afraid ofcongregation members not coming,
because a certain person isloud, or certain person behaves
differently than you, then like,so be it let them find a
different congregation. Like whylike not? Why take out the one
(11:43):
person that comes every time forfor people who have a problem? I
don't know what that. But that'skind of where my sentiments lie.
Chris Berstler (11:51):
Yeah. What are some potential benefits
individuals with disabilitiesand their siblings may
experience from being a part ofa faith based community.
Sarah Hall (12:00):
For me growing up, it was really the shared
experience that my brother and Iand our other brother had with
going to church together becauseall of our other activities were
separate. But this was somethingwhere we could do it all
together. We had like the sharedtraditions, you know, we could
talk about it. And that it justpaint. I mean, obviously, it's a
(12:22):
part of our lives, but it itreally brought us closer
together. And I think even onebenefit, which I'll tell you
sometimes didn't feel like abenefit, but Charlie loved the
music. It was calming to him. Heyou know, he could just listen
to it. And it's just sue Tim.
And he for some reason, love thesong Silent Night. And I'll tell
(12:46):
you what, we heard that songhummed every day, throughout the
entire year, for years and yearsstraight. But to this day,
that's like one of my favoritesongs. When it comes to like
Christmas Eve, and everyone'ssinging it. I can't sing that
whole song. Because it's someaningful to me, I get choked
(13:08):
up, because that's Charlie,that's us doing things together.
And so for me, that was a reallybig part of sharing our
spirituality.
Sehrish Shikarpurya (13:21):
Yeah, that is that remote. Yeah, that is so
similar to my experience aswell. Because my my sister, and
I think it did bring ustogether. And I think, for her,
it was something that was hersthat she could do. And it was a
scheduled and thing that she didevery day. So she didn't have to
think about it. It was justsomething she did she went every
(13:43):
day did the same exact routine.
Does my sister believe in God?
And Does she understand theprophet hood? And all of that? I
don't know. But is she going tosit there and pray her heart out
every day? Absolutely. And Ithink that matters, and it does
bring us together. And I thinkit honestly made me feel less
guilty about activities that Iwas doing away from her. Because
some of them she couldn't be, orshe didn't want to, or I growing
(14:07):
up didn't want her to be a partof them. And so this was a space
where I felt like we could stilldo things together have shared
experiences, and also, like betogether like a family. I think
it also provided her with a lotof social support. Like she
didn't have a lot of friendsgrowing up. So this was a place
where she could at least haveacquaintances and say hi to
(14:29):
people and feel like shebelonged in a in a larger space.
Yeah, that
Sarah Hall (14:34):
social part is is important too. Even though my
brother Charlie, I don't thinkhe had any actual friends at
church. But for me as a siblingto see that people accepted him
because he came you know, everysingle week he was there and he
was with our family. Just toknow that they they welcomed him
and accepted him like I feltmyself like breathing deeply
(14:56):
like, ah, like almost relieflike okay, there's this One
environment where I don't haveto, like, keep my guard up, like
I can actually relax in thisenvironment, because I know that
they're gonna treat them. Allright,
Chris Berstler (15:09):
how can we support our siblings who
expressed an interest in being apart of faith based community?
Sarah Hall (15:15):
That's a good question. I guess it depends on
where they're at, if they'vebeen a part of it their whole
life and just want to trysomething else out, or if they
just want to, they're interestedin like dipping their toe in
because I think just talkingabout it, like describing what
actually happens, prepare themto say, you know, like, what do
you do there? You know, whatwould you say to people when you
(15:36):
arrived, making sure thatthey're comfortable and having
like, an idea of what goes on.
And I think just tryingdifferent things in different
ways, like, because not everyonecan go to like, in my Methodist
church, we had a service everySunday morning, not everyone
feels the most, you know,belonging or that it just
(15:58):
doesn't hit them, as well asmaybe there's a Wednesday night
service, maybe there's the choirthey want to be in, or they want
to do service or something likethat. So I think, like figuring
out who they are, and what's agood way to kind of try things
out a little bit.
Sehrish Shikarpurya (16:17):
I definitely really liked that.
Because just having that, like,pre conversation would be really
cool to see like, why we're Whatdo you want to do? Do you want
to pray in the back? Do you wantto be in the front? Do you want
to hold the holy book? Or like,I don't know, do you want to be
part of this? So that, I thinkin addition to that, I also
(16:40):
wonder if it would be beneficialfor at least for my sister to
take on leadership roles withinthe mosque, like, you know, for
us, anybody can, you know, singthe holy songs, anybody can
recite the prayers, you justhave to like book an
appointment, essentially, inadvance. And so I would love for
her to do that. I think she usedto do that when she was younger.
(17:03):
And then people just told herall of the things that she
wasn't doing right when doingthat, for example, like don't
put the holy book on the ground.
It'll be fine. Don't do this.
Don't do that, you know, as shekind of veered off from that,
that would encourage her to takemore leadership positions, even
to be a part of the specialneeds classes and teach some of
(17:25):
them I think that would bereally cool. Now that she's
older, and honestly, like, Ithink even think about like when
she gets older. If she livessomewhere else one day by
herself, like, does she want tobe close to this mosque? Is it
this specific one? Is she goingto go to a different one, I
think there'll be a whole changeif you were to go to a different
(17:45):
one. So that'd be interesting totalk about as well.
Sarah Hall (17:50):
Yeah, and I think also for my brother, like making
sure to connect him with let mecall him nice people. Like they
don't have to have specialskills or anything, just like
somebody who will say hi to him,you know, someone if like, they
see him confused, somewhere,we'll be like, Hey, Charlie, you
know, come on over here. And notthat anyone's assigned to him,
(18:10):
but just to connect them topeople to support him
throughout. So it's, it's moreof a community based thing for
him?
Chris Berstler (18:18):
What supports and resources can you recommend
for anyone wishing to help theirsiblings thrive in a faith based
community?
Sarah Hall (18:25):
You know, what I would just first check with,
like, the people at either thechurch or mosque or wherever
you're at to see what's going onright now? What do they know?
What, you know, what supportscould they bring that you don't
see, because they're kind ofdone behind the scenes? Because
it's, I think it's hard to findresources and support and then
(18:48):
to take something you foundonline and like, apply it to
somewhere where they haven'theard of that. So just see where
they're at right now. And ifthey have programs, great if
they don't, you know, how couldother people support them? I
think peer mentoring could be areally good thing.
Sehrish Shikarpurya (19:08):
You know, I was just thinking about that
peer mentoring and Parent toParent connections, I think for
us that has really thrived isthat when while we don't have
any formalized supports, atleast not until the past two
years, we have now but eventhen, like the parents network
is so strong. And because ofthat the children the individual
(19:28):
network is so strong as well,because they connect, they hang
out, they do things together. SoI would say like find, find
other individuals who who alsocould need extra support, or
that you know of I know for usthere was a whole thing where
one person's wheelchair waspassed down to like for other
(19:49):
people over the course of like a10 year process. And so because
of that they all like bondedreally well. And they kids hang
out and they grew up togetherand things like that. So just
shared experiences like that.
And I also would talk to theleader of the community or
whoever the person heading, itwould be to just be like, hey,
(20:09):
you know, I may have a differentsupport need, is there anything
that you have that you cansupport me with? Or even like,
FYI, I'm, I've, my kid is goingto make like, five different
sounds in the next 30 minutes.
And you just have to be okaywith it, I guess or like, I'm
trying to think of a better wordto say, but like, it is going to
(20:31):
be what it is. And I know this,and I know, we're, you know,
we're taking, we're doing ABAand blah, blah, blah, but I just
am telling you, just so you areaware, so don't come to me five
days later to tell me that thisis happening, because I know it.
And I got it. You know, like, Ithink it'd be interesting for
parents or individuals to takethat step and be like, I know,
(20:53):
it is what it is. And that's itinstead of so then I think it
would limit the top down comingdown and hounding them and be
like, did you know Yes, I doknow, I sit next to my child
every day. I know, like, so.
Sarah Hall (21:08):
Yeah, that's, I love what you're saying about that
how, like, as siblings, we canhelp by saying, he's gonna make
noise, and that's okay. He'sgonna move around. And that's
okay. I, I think there'sdifferent ways to worship and
just kind of reminding everyonethat there are different ways to
be to worship, and that maybethat will make other people feel
(21:31):
more comfortable and invited tothe church as well.
Sehrish Shikarpurya (21:35):
That's such a good point. Yeah, like,
leading by example. Right? Justyeah, it should be this example.
It's not the sitting quietly,it's, it's being you. Yeah.
Chris Berstler (21:46):
I would spirituality impacted by
different parts of one'sidentity, ethnicity, culture and
disability.
Sarah Hall (21:53):
I think sometimes, like with disability, there's
definitely that tension betweenjust who you are, and you know,
you have strengths, you know,you know, you're different than
other people. But who you weremade to be, is different than,
you know, just the norm outthere. And it's different than
(22:14):
what some people say, you shouldbe, you know, and so I think
that's in, in some cultures,it's like, well, you have a
disability because of this. Andlike, there's that, that stigma.
And so it's like, I want to belike, in the Christian faith,
the child of God, I want to dothis, I want to be amongst my
community. But is theresomething wrong with me? So I
(22:37):
think that tension really makesmakes people think about like,
who am I and in a family, like,how do we actually fit into
there?
Sehrish Shikarpurya (22:48):
Yeah, you know, the tensions are very much
evident in my community, aswell, because I think as a
population that had emigrated tothis country, what like maybe 50
years ago, 60 Max, that is stilltrying to figure out where they
fit within the American society,American paradigm. And then to
(23:11):
have another layer ofexclusivity, I think, is really
hard to think about and manage.
And I think that that is veryevident, I think within our
mosques specifically, is thatyou can see that everyone wants
to fit in, but then having achild with a disability somehow
excludes you from the wholescheme of things, according to a
(23:32):
lot of the parents, and thenthey just feel like they don't
fit anywhere. And I think thatalso, and I've also noticed, an
index can be very specific tolike a few cases in my mosque,
but women mothers typically feelmore of the burden. And I don't
know why it's, like, forexample, the I've been told that
(23:54):
they have to dress very modestlyand wear white or do this and do
that because they have a childwith a disability. And I was
like, what so you know, it's,it's this sense of extinguishing
your own desires, because yourchild has a disability, because
you sometimes think that it maybe, you know, caused by God or
(24:16):
by other factors and things likethat. And so I think those
tensions are also very evident,and they could be gender based
ethnicity based racializedexperiences as well. I don't
know how to mitigate them. But Ido know they exist. So it's
really hard sitting with thatfact, I think is to be
(24:37):
vulnerable and be like, thisexists. And I see it every day.
And I'm not sure how to, youknow, disaggregate things from
that big label of disability andjust thinking that things are
wrong, which is not but yeah,education maybe.
Chris Berstler (24:56):
So that I guess that will bring me to the next
question. Well, What resourcesare still lacking in regards to
spiritual supports withindisability communities?
Sarah Hall (25:07):
Well, I know of one specifically is supporting
direct support professionals tofeel comfortable, and to support
somebody spirituality inwhatever way that is. So my, as
I mentioned, my brother Charliewent to church with us every
Sunday, he went to events andall of this stuff. And when he
(25:30):
was in his late teens, he movedto a group home. And after that,
I don't think he stepped foot ina church for maybe 20 years.
Right. And so it's, how do wedeal with that? You know, how do
parents communicate that? Howdoes he communicate, especially
when he, he has more difficultyin communication? You know, he
(25:51):
doesn't have conversations, it'smore of, you know, Question and
Answer with him. And so he doesnot, you know, express his wants
and needs unless it's like,suffers coming up, this is what
I want, I want to eat. But he'snot able to express that on his
own about, hey, I enjoy going tochurch, this is what I enjoy
about it. And so for him, it'sdifficult. So how is that
(26:15):
communication? How are we using,like person centered planning or
person centered approaches, toreally help him find where he
fits in where he belongs,because he did like that when he
was growing up. But once he wasin a group home, he stopped
going, and they didn't, youknow, there was one staff for
(26:37):
two different people, ifsomebody else didn't want to go,
how do you work with that? Howdo you plan? And how do you
support somebody who maybe has afaith different than your own?
And so I think that's somethingwhere we really need to address
and work on that to make surethey know what to do.
Sehrish Shikarpurya (26:54):
That is such a good point. You know, the
amount of times I've heardpeople say, like, exactly what
you're saying, Dr. Hall is crazythat we really need this, and we
don't have enough literaturebase around it. And we don't
have enough support for thedirect professionals to be able
to provide these kinds ofservices. You're so right,
because, you know, one of theparents that I was speaking to
(27:17):
recently, they were saying howtheir child, when he got when he
would get really stressed outlike before a test, he would
recite prayers, and he would inhis class and like high school,
and it'd be loudly. And so theteacher decided that they need
to extinguish this behavior andmake it so that it could be
generalized. And so theindividual then stopped
(27:39):
completely, they didn't do it atthe mosque, they didn't do it
anywhere else. And yes, thatbehavior, extinguish, because it
is maybe embarrassing to dothat. But like, we all have
things that we do before a testto calm ourselves down. And some
of us just stayed in our head,right? That's the only
difference. And so that I thinkhaving that knowledge would have
been so important at that timefor that instructor to then be
able to provide supports thatcould help that individual
(28:03):
manage that. But moreimportantly, just maybe a
different way of calmingthemselves down. And so that's
so important. And I also think,like, even so I work a lot with
transition planning. And I thinkone of the biggest gaps that I
see right now is that we don'thave enough supports or
(28:24):
understanding of how to providecommunity supports that relate
to faith based planning. So wehave community support, it's
like, you know, you can workwithin the ice cream shop that
your uncle owns, or you can, youknow, be located next to a
grocery store. But I don't thinkwe often think about like, is my
sister going to be able totravel independently to the
(28:45):
mosque when I'm not around, ormy mom's not around? Will an
individual be able to work orvolunteer at their mosque or
their church if they would liketo, and we don't consider those
opportunities often, as youknow, like feasible meaningful
employment opportunities.
They're just seen as likeinternship or there's, you know,
the volunteering gig, it's notsomething that people
(29:07):
necessarily see as a full timemeaningful employment. And I
also think, we need to thinkfurther about, you know,
ourselves and our space in theworld as related to our
spirituality, like in terms ofmy sister goes to the mosque
every day. Why? I don't know, Idon't I think it might be
(29:27):
belonging, it might be that shefully believes in it. But if
this is something that shereally wants to do, I wish it
was something that was nurturedand fostered for her for you
know, since she was in middleschool, or earlier, it was
something that she decided to goand we just kind of were like,
okay, cool, let's let's go withthe flow. But it's not something
we necessarily intentionallydid. So I wonder if having that
(29:48):
intention there were to increaseour sense of belonging in that
space.
Sarah Hall (29:53):
Yeah. And I think there are a lot of resources out
there. But how in the world doyou find them?
Sehrish Shikarpurya (29:59):
Yeah
Sarah Hall (30:00):
You know, there's, I'm sure something's been done
for everything. But if it's in alittle pocket here in this state
somewhere in another state, howdo we know about it? How do we
learn what to do? And do we haveto have specialized programs? Or
can there just be a framework ofjust understanding and knowledge
and learn a few things? Butlike, where is that information?
(30:22):
And so kind of bringing that alltogether to educate the faith
communities, the members of thechurch or the faith community,
just to get them on the samepage, I think?
Chris Berstler (30:35):
How might we influence changes in our own
spiritual communities to helpsupport a more inclusive
environment that benefitsindividuals with disabilities?
Sarah Hall (30:43):
I think about one example, with well, Sehrish, she
kind of brought this up of beingan example, kind of showing
people that, you know, this ishow I react when my brother does
something. But then also, whenyou meet other people with
disabilities in your faithcommunity kind of being that
example of, I'm going to go upand say, hi, it's okay to talk
(31:04):
to people. I'm going to sit bythem, I'm going to show everyone
that I am okay with this extranoise. So I think that's just
important to show people thatI'm comfortable with this, you
can be to kind of thing. And Ithink it's also important to ask
questions. And it could just beasking questions of the leaders
(31:26):
of the church, like, you know,what do you do? Have you thought
about this? Is there a place forpeople? And how do you know
that? So kind of starting thoseconversations could influence a
lot of change? I know when I wasyounger, at a church, and I was
a teacher, so they, of course,put me on the Education
Committee. And so they turned tome. And they said, Sarah, is
(31:47):
there anything? You think we'remissing for our goals for the
year? And I was like, Well, youknow, is there a place for
people with disabilities at ourchurch? You know, how are they
welcomed? And just thatquestion, prompted them to,
like, look into it. And theywere like, Well, would you like
to start a friendship ministersprogram? Okay. Not that that's
(32:08):
the only way people can beinvolved. But that's one way
that they could. So I think justbeing there and asking
questions, and being an exampleis very helpful.
Sehrish Shikarpurya (32:18):
That's so great. You know, having that
voice and then startingsomething, and just having so
many other voices, that's soinspiring. You know, for us,
we've done webinars for mosques.
And we had what, like 50-60parents join across the country,
which was kind of nice. We'veand then it was interesting,
because those webinars led tothose parents, forming like a
(32:41):
group me like a massive group,me where they just talk and
share resources and stuff. Andthat was really cool. I think
we've done brochures in the pastare like little flyers of like
disability etiquette for theleadership of the mosque. I
don't know if they read them.
But we produce stuff. I don'tknow if it's in somewhere. But I
(33:05):
mean, we've done these littleefforts. But I think I think I
would love for individuals withdisabilities to also be involved
in this process is for them tobring about change from their
own experiences and their voice.
That would be amazing forsomeone to be like, Hey, this is
who I am. And this is what I do.
And if you want to join and hangout, let's do something, you
(33:25):
know, we have all these camps,and all these programs for
kiddos. But then when you have aperson with a disability, they
have to sign like 20 Safetyforms, and people are more
hesitant for them to be on boardbecause no one wants to take the
responsibility of beingresponsible for making sure this
kid gets from you know, so it'sa lot more layers added to it.
But I wonder it doesn't have tobe something exclusive. If it's
(33:48):
not alright, if it's not easy tobe a part of it. Then like you
said, Dr. Holick createssomething else that's going to
provide that inclusivity andthen invite other people to join
in. I think another thing thatwould be is to not infantilized
individuals. The reason mysister got she my sister is
almost 30. But people still comeup to her and yell at her like
(34:11):
she's a 15 year old 13 year old,you know, so our people, you
know, we will let go the will gosmiles at me all the time. She
must be so happy. I don't know,did you ask her? Have you spoken
to her? Or do you just like waveat her from the far off? You
know, so it would be nice toeducate people on also that
these are individual adults thatour choices and decision making,
(34:33):
and that we don't need to treatthem as a kid. You know, so I
think that would be that wouldbe where I would like to start
next time. I go on a mission todo some change.
Sarah Hall (34:46):
Yes. Yeah. And you You reminded me, I was thinking
of just telling our stories. Andnot that it has to be the story
of Charlie and Sarah but thestory of it could be you know
this In relationship, or itcould be, like other people we
meet. When I was at that church,and I was, I was I wasn't
(35:07):
working with them. I was playingreally, with people with
disabilities and the otherchurch members, I met this young
man, David, and he had gone tochurch there already. But when
he went to church, he went withhis mom and dad, and he was very
quiet. He's, you know, was like,velcroed to their side the whole
time, I think he said hello tolike, the pastor of the church,
(35:29):
but he didn't really talk toanyone else. It was like in sit
out. But then after he had beenin the group, with everyone
else, he came to an event. Andhe was, of course, right by his
mom, velcroed. To her side, hesaw me. And he quickly Annville
killed himself. He quicklywalked to me and was like, Hi,
(35:50):
Sarah, how are you? And I wasjust like, that is awesome. That
is amazing. Like, you could seehis face light up. And I was
just like, This is so good. AndI thought, oh, my gosh, it's not
me helping him. He's making mebelong in the church. I feel
(36:11):
like I'm a part of the churchbecause of him. So making sure
people hear those stories. Andlike you said, having people
with disabilities in thosedifferent positions, I think,
can make a huge difference.
Chris Berstler (36:25):
How has the pandemic impacted individuals
with disabilities within faithbased communities,
Sarah Hall (36:31):
just being less connected, I would say, because
maybe you just haven't seenpeople. And even participating
via video, a lot of that'spassive participation, maybe
just watching something, or alot of it's language based. And
so for my brother who doesn'thave conversations, that would
(36:51):
be very difficult. Because he,he needs to be able to do
something with people to be withthem to maybe serve in a
meaningful way. Maybe he's theone helping set the table. And
he has a valued role in thecongregation because he's doing
something. But it's verydifficult to be a part of like
language based activities likethat. So I feel there are some
(37:14):
people out there who just feelless connected right now.
Sehrish Shikarpurya (37:17):
Yeah, I would say that too. That's my
experience as well, I'm lessconnected. And I think it could
also lead to like forgettingabout some of the rituals and
some of the sayings and prayersand stuff because you're not
doing them as often. And then Ithink the major thing for us was
that social aspect justdisappeared from their lives
(37:38):
completely. In addition toeverything else, you know, it
was just like, they had this oneplace that they would go to, and
it just it just kind ofdisappeared. And I think it's
also coming back into it, Ithink it was a little more
difficult. I think the wholemask, the mask mandate prevented
a lot of some of my, some of theindividuals I work with from
(38:00):
coming in to the mosque. Andthen I think, with that even
those who could, you know, wearmasks and things like that they
things had changed, like youcouldn't drink the holy water
anymore, or you couldn't shakepeople's hands. And you couldn't
give people hugs. And so thatreally transformed the
experience for them intosomething that was more based on
(38:22):
individual aspects of the ritualmore than the communal. And
that's that was a lesson for metoo. I was like, wow, I didn't
realize how much you reallyliked being with the community.
So that was great to see. Ithink also, I would say it's, it
was harder for a lot of theparents as well, because a lot
of the mosque, the mosque timewas used as respite. And so that
(38:47):
was really difficult. But I'veseen a lot of people just get
back into the swing of thingsnow. So I mean, we still have a
masked mandate and things likethat, but I think they're very
excited to to get back into it.
And be part of the communityagain,
Chris Berstler (39:06):
what words of encouragement or advice might
you have for any siblings in themidst of their own spiritual
journeys?
Sarah Hall (39:13):
I think I would say that it is okay to be where
you're at. We're all on our ownjourney. There's no specific
journey you have to be on. Youdon't have to be like others.
And it's okay to have a journeywith your sibling or just a
journey on your own. So I thinkit's you need to think about
kind of who you are, what youneed, and, and be okay with that
(39:38):
and be okay with, you know what,I'm not quite okay right now, or
I would like to be moreinvolved. I feel guilty. I went
through those times as well. Butit was those who are good for me
because I could feel the poll. Icould feel myself missing that
aspect of my life. And so, forme, it was a chance to to
(39:58):
understand that it was Real,that it was something that was
really important to me. So Iwould just say you're okay. And
do it your way.
Sehrish Shikarpurya (40:10):
I love that I wish someone told me this when
I was a teenager because I thinkit would have would have
developed. You know, I thinkthat in addition to what Dr.
Hall suggested, I think it's notyou, you think it's you, you
think it's the way you're doingthings, or it's, it's not you,
(40:31):
it's just the way societyfunctions sometimes. And it's
okay to step away from it. Ifyou need a break, and you can,
you can come back to it, it'sokay to be in it the whole time.
And I think there's a lot ofspace in faith and spirituality
for you to exist alongside yoursibling with a disability. So
(40:52):
you don't have to do thedisability work within the faith
space, if that's not your thing.
And if it's overwhelming at thetime, there's a lot of space
where you can contribute and youcan belong and find inclusive
spaces. And another thing Iwould say is, let your sibling
be. I when I was younger, I waslike, Man, I wish he would just
(41:14):
conform. I wish he would just dothis. I wish it was easier. And
honestly, I let her be and itwas the best because I was like
this is what it is. And I'm justgonna let you do you. And I will
do me and we will go day to dayin that was really helpful.
Chris Berstler (41:32):
Thank you so much for taking the time being
with us today and sharingeverything. I'm sure there's
going to be a lot of sibs outthere who are going to get so
much from this. So reallyappreciate your time. Thank you
so much.
Sarah Hall (41:44):
Yeah, thank you, too.
Sehrish Shikarpurya (41:45):
Thank you for having us. We appreciate it.
Chris Berstler (41:49):
Find the resources, tools and information
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from our audience. Find thedonation button on our homepage
and contribute to the evergrowing sibling movement.
Welcome to the sibling Leadership Network
podcast. The sibling LeadershipNetwork is a national nonprofit
whose mission is to providesiblings of individuals with
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with their brothers and sistersand to promote the issues
important to us and our entirefamilies.
(00:23):
Hello, and thank you for tuningin for another episode of the
SLN Podcast. Today we will bediscussing spirituality for
sibs, and supports for oursiblings with disabilities to
participate in faith basedcommunities. I would like to
welcome our guests Dr. SarahHall from the Institute of
community integration Universityof Minnesota and Texas a&m
doctoral students, SehrishShikarpurya. Thank you for
(00:45):
joining us today.
Sarah Hall (00:47):
No, thank you for having us.
Chris Berstler (00:48):
I'd like to just start off and ask you to please
introduce yourselves andanything important about
yourself. So you'd likeeverybody to know.
Sarah Hall (00:55):
Okay. Well, I am Sarah Hall. And like you said,
I'm from the Institute onCommunity Integration. And I am
a researcher there. I did kindof grow up in different
disability fields where I was ahigh school special education
teacher. I was a professor formany years in special education,
and now I get to do research andother projects. So I do have
(01:19):
one, I have two brothers, butone has multiple disabilities.
And they're more significant, Iguess people would say, to where
he has autism, cerebral palsy,Down syndrome, little epilepsy,
you know, it's just whatever.
He's just Charlie.
Sehrish Shikarpurya (01:36):
Thanks, Sarah for sharing. Hi, everyone.
My name is Sehrish. I'm a thirdyear doctoral student at Texas
a&m. Specifically, I'mresearching transition to
adulthood outcomes for raciallyminoritized populations living
in the United States, focusingon what are some of their
strengths, and what are some ofthe ways in which they navigate
the transition world, a worldthat typically hasn't been
(01:59):
designed for them or by them. Iam a sibling of Shazia, who is
my little sister, little as inshe's only one year younger than
me. She was diagnosed withautism in middle school, which
is quite late. And it could bedue to a that she is a female
(02:19):
and a lot of the symptoms orsome technology we just didn't
identify or think about earlyon, she is currently working.
And I'll go into my sisterlater, I feel like I start with
her. And then that's kind ofwhere I go. So that's a little
bit about me.
Chris Berstler (02:38):
Thank you very much for sharing, How has being
a sibling of an individual witha disability shaped your
spiritual journey andperspective.
Sarah Hall (02:46):
I think for me, I've, I've noticed the gifts
that other people have moreoften and you know, some of
those hidden gifts are the onesthat are smaller, but are really
impactful. Because I've seenlike in my brother, how how,
like the light just kind ofshines from him or he'll sing or
he'll he's very empathetic. Butnot everyone knows that you
(03:06):
can't see it. And I think I'vebeen more comfortable with
different ways of worshipping.
Just because I see my brotherdoing it different. I'm okay
with others doing a differentI'm okay with hearing things or
seeing things different ifsomebody's moving a lot. And so
I think it's just having a morecomfort in a variety of
approaches really, and I thinkeven felt more of a call to
(03:28):
service and I don't know if it'sbecause of my brother and my our
situation or just who I am. Ilike to do the serving part I
enjoy like doing hard work.
Sometimes I'm okay with theboring work, but just to support
others and work alongside them.
Sehrish Shikarpurya (03:47):
You know, my journey similar. And my
experiences have been similar toDr. halls as well and that I
think my sibling and I'm Iidentify as a Muslim. And so
within my mosque space, I'veseen my sister really thrive.
And some of the ways in whichshe decides to pray or decides
to call on to Allah, I've seenher sort of thrive in that
(04:10):
space. And I think it's kind ofinspired me to work within my
mosque as well. I do a lot ofwork with our special needs that
we call our special needs.
Community, individuals withdisabilities and they range from
like ages three all the way upto like 6570 However, I think
for me, I've also become overthe years as a teenager, I was
(04:32):
very reluctant to work in themosques space because I saw a
lot of exclusionary practiceswith my sister, and others and I
kind of rejected religion a lotfor quite a while because I
thought it wasn't a space whereme and my family could thrive or
felt like we belonged eventhough we prayed every day for
the belongingness and being kindto our neighbors and all those
(04:55):
other things. However, I thinkover time her resilience has
really inspired me to continuebeing part of a faith community.
I think despite of the thingsthat she gets told, despite the
looks that she gets, despite allof those things, I think she's
still there every day. Forexample, this is a holy month
for us. It's Ramadan. And wehave like a night of power that
(05:17):
we call where we pray the wholenight. And so she's leaving work
early, to go pray all night, andthen work the next day, while
knowing that when she praysreally loudly, people will sort
of come to her and tell her tostop being loud, or to stop
moving her body too much, orstop using the rosary beads too
loud. So like her dedication isinspiring for me and kind of
(05:38):
uplifting me in my own faithjourney as well.
Chris Berstler (05:43):
Awesome. Thank you both for sharing. What
challenges do individuals withdisabilities face within faith
based communities?
Sarah Hall (05:50):
Well, you were saying just dove right into some
of the things that initially Ithink about, like one of the
initial challenges I think aboutare those looks, those comments,
those things. And as a family,how much tolerance do you have
for that kind of? It feels likea push back really, to you? So I
think it's like, initially thatfamily's comfort level in being
(06:14):
in the area. And then, you know,is there a place for you there?
Not that there has to be aspecial place. But is there any
place for you there? When I wasvery young, we had to switch
churches, I grew up in theMethodist church, my family's
Christian. And when my brothergot old enough, which may have
(06:37):
been around preschool,kindergarten, somewhere around
there, his differences weredifferent enough where they
didn't know what to do. And sothey they told him, he couldn't
come. And so we had to changechurches. And so for me, like,
is there a place? And I know alot of people talk about, like,
oh, being inclusive is the bestfor everyone. But right now, I
(07:00):
think having like that, like acontinuum of places to where,
where does the family, wheredoes the person feel
comfortable, because I thinkthat's such a challenge, where
it's, we don't have that place.
And I remember when I wasyounger, and I went to a
different church, I helped startlike a friendship ministries
program for people with andwithout disabilities. And so we
(07:22):
had people come to church, whohad never been to our church
before. And they met our churchmembers and started, and I was
like, This is great. But in myhead there was that back and
forth of was it inclusiveenough, you know, my plan was to
say, Okay, you start here, andthen you can get more involved.
But they loved it, they had aplace. And so I think that was
something that was and still isa barrier for a lot of people.
(07:47):
And also sitting quiet for solong. Who can do that without
moving without coughing withoutlooking around? Ah, that's so
difficult to do.
Sehrish Shikarpurya (08:01):
Ya, you know, I'm very, very similar in
my religious space, as well. Andit just, I think, I think the
biggest challenge has to be thetop down, for me, particularly,
is leadership. So the way ourmosques works is that there's
different leaders that aredesignated towards each mosque.
(08:22):
And so like, recently, Iremember I got a call from one
of the leaders saying, thischild is making too many verbal,
loud sounds, and everyone'scoming to me and saying, We
should put this child in theback, we should put this and
he's like, I don't want to dothat, because he himself thinks
he's being inclusive. But at thesame time, he keeps calling the
(08:42):
family to tell them that theirchild is loud. And to the point
where the fam, every time hecalls a family, the mom picks up
and says, Are you calling mebecause my kid was loud again.
And you know, it just reallymakes me think about what what
are we doing from the top downin terms of preventing these
challenges? Why is it that theindividual who's loud, is told
(09:03):
to stop doing that, but thecongregation members aren't
actually invited to be moreinclusive or be like, hey,
that's okay. I mean, the elderlyare quite loud within our mosque
as well. And nobody really tellsthem to stop. people's phones go
off, and no one really cares. Sowhy is it that this individual
is being pushed by society aswell as the inclusive mosque
(09:24):
space to be conforming to acertain ideal? And so I think
that's one of the challengesthat I've really had going back
and forth is that we push forinclusion from the bottom up,
and then at the top level, it'skind of like, well, it is what
it is, or sometimes we don'thave those individuals here,
which is not true. I know forus, a lot of the stereotype is
(09:47):
also very evident within ourmosque and the feelings that we
get about people withdisabilities is a lot of stigma
attached to it. A lot of parentsand even my mom sometimes like
they'll tell me like, I feelembarrassed. cuz people look at
me, I feel embarrassed becausepeople want to hush my kid, I
feel embarrassed because, likepeople have gone up to my sister
(10:08):
and told her things, but my momwas sometimes I think reluctant
to defend her because she wantedher to step up and do that. But
at the same time, they don'twant to be identified as a
person with a disability,because there's a lot of hush
hush, like, there's somethingoff, we don't know what it is,
we will not label it. But wewill just kind of be hush about
(10:29):
it and not say that it's adisability or like, say that
it's something that we'rethinking about or continuing to
work on. So that's kind of beenmy challenge as well.
Sarah Hall (10:41):
Yeah, I think the understanding of others have,
that it's okay to make noises. Iwas, I was actually at the gym
last night, and there wassomebody who, I believe had
autism, and making loudernoises. My first fear was, don't
take him out. You know, don'tget him, you know, don't take
him to the parking lot. Like,let him stay here. Let people
(11:02):
get used to hearing things, letpeople be okay with him. He was
sitting on a mat, rocking backand forth bouncing off of a ball
that was behind him. Let peoplebe okay with that, the more they
see him as a person. And themore others people like they
interact with them, like, that'sgoing to help people become
included.
Sehrish Shikarpurya (11:21):
Yeah, absolutely. And I think
sometimes the challenge is alsomaybe the fear of backlash. And
I think if you're afraid ofcongregation members not coming,
because a certain person isloud, or certain person behaves
differently than you, then like,so be it let them find a
different congregation. Like whylike not? Why take out the one
(11:43):
person that comes every time forfor people who have a problem? I
don't know what that. But that'skind of where my sentiments lie.
Chris Berstler (11:51):
Yeah. What are some potential benefits
individuals with disabilitiesand their siblings may
experience from being a part ofa faith based community.
Sarah Hall (12:00):
For me growing up, it was really the shared
experience that my brother and Iand our other brother had with
going to church together becauseall of our other activities were
separate. But this was somethingwhere we could do it all
together. We had like the sharedtraditions, you know, we could
talk about it. And that it justpaint. I mean, obviously, it's a
(12:22):
part of our lives, but it itreally brought us closer
together. And I think even onebenefit, which I'll tell you
sometimes didn't feel like abenefit, but Charlie loved the
music. It was calming to him. Heyou know, he could just listen
to it. And it's just sue Tim.
And he for some reason, love thesong Silent Night. And I'll tell
(12:46):
you what, we heard that songhummed every day, throughout the
entire year, for years and yearsstraight. But to this day,
that's like one of my favoritesongs. When it comes to like
Christmas Eve, and everyone'ssinging it. I can't sing that
whole song. Because it's someaningful to me, I get choked
(13:08):
up, because that's Charlie,that's us doing things together.
And so for me, that was a reallybig part of sharing our
spirituality.
Sehrish Shikarpurya (13:21):
Yeah, that is that remote. Yeah, that is so
similar to my experience aswell. Because my my sister, and
I think it did bring ustogether. And I think, for her,
it was something that was hersthat she could do. And it was a
scheduled and thing that she didevery day. So she didn't have to
think about it. It was justsomething she did she went every
(13:43):
day did the same exact routine.
Does my sister believe in God?
And Does she understand theprophet hood? And all of that? I
don't know. But is she going tosit there and pray her heart out
every day? Absolutely. And Ithink that matters, and it does
bring us together. And I thinkit honestly made me feel less
guilty about activities that Iwas doing away from her. Because
some of them she couldn't be, orshe didn't want to, or I growing
(14:07):
up didn't want her to be a partof them. And so this was a space
where I felt like we could stilldo things together have shared
experiences, and also, like betogether like a family. I think
it also provided her with a lotof social support. Like she
didn't have a lot of friendsgrowing up. So this was a place
where she could at least haveacquaintances and say hi to
(14:29):
people and feel like shebelonged in a in a larger space.
Yeah, that
Sarah Hall (14:34):
social part is is important too. Even though my
brother Charlie, I don't thinkhe had any actual friends at
church. But for me as a siblingto see that people accepted him
because he came you know, everysingle week he was there and he
was with our family. Just toknow that they they welcomed him
and accepted him like I feltmyself like breathing deeply
(14:56):
like, ah, like almost relieflike okay, there's this One
environment where I don't haveto, like, keep my guard up, like
I can actually relax in thisenvironment, because I know that
they're gonna treat them. Allright,
Chris Berstler (15:09):
how can we support our siblings who
expressed an interest in being apart of faith based community?
Sarah Hall (15:15):
That's a good question. I guess it depends on
where they're at, if they'vebeen a part of it their whole
life and just want to trysomething else out, or if they
just want to, they're interestedin like dipping their toe in
because I think just talkingabout it, like describing what
actually happens, prepare themto say, you know, like, what do
you do there? You know, whatwould you say to people when you
(15:36):
arrived, making sure thatthey're comfortable and having
like, an idea of what goes on.
And I think just tryingdifferent things in different
ways, like, because not everyonecan go to like, in my Methodist
church, we had a service everySunday morning, not everyone
feels the most, you know,belonging or that it just
(15:58):
doesn't hit them, as well asmaybe there's a Wednesday night
service, maybe there's the choirthey want to be in, or they want
to do service or something likethat. So I think, like figuring
out who they are, and what's agood way to kind of try things
out a little bit.
Sehrish Shikarpurya (16:17):
I definitely really liked that.
Because just having that, like,pre conversation would be really
cool to see like, why we're Whatdo you want to do? Do you want
to pray in the back? Do you wantto be in the front? Do you want
to hold the holy book? Or like,I don't know, do you want to be
part of this? So that, I thinkin addition to that, I also
(16:40):
wonder if it would be beneficialfor at least for my sister to
take on leadership roles withinthe mosque, like, you know, for
us, anybody can, you know, singthe holy songs, anybody can
recite the prayers, you justhave to like book an
appointment, essentially, inadvance. And so I would love for
her to do that. I think she usedto do that when she was younger.
(17:03):
And then people just told herall of the things that she
wasn't doing right when doingthat, for example, like don't
put the holy book on the ground.
It'll be fine. Don't do this.
Don't do that, you know, as shekind of veered off from that,
that would encourage her to takemore leadership positions, even
to be a part of the specialneeds classes and teach some of
(17:25):
them I think that would bereally cool. Now that she's
older, and honestly, like, Ithink even think about like when
she gets older. If she livessomewhere else one day by
herself, like, does she want tobe close to this mosque? Is it
this specific one? Is she goingto go to a different one, I
think there'll be a whole changeif you were to go to a different
(17:45):
one. So that'd be interesting totalk about as well.
Sarah Hall (17:50):
Yeah, and I think also for my brother, like making
sure to connect him with let mecall him nice people. Like they
don't have to have specialskills or anything, just like
somebody who will say hi to him,you know, someone if like, they
see him confused, somewhere,we'll be like, Hey, Charlie, you
know, come on over here. And notthat anyone's assigned to him,
(18:10):
but just to connect them topeople to support him
throughout. So it's, it's moreof a community based thing for
him?
Chris Berstler (18:18):
What supports and resources can you recommend
for anyone wishing to help theirsiblings thrive in a faith based
community?
Sarah Hall (18:25):
You know, what I would just first check with,
like, the people at either thechurch or mosque or wherever
you're at to see what's going onright now? What do they know?
What, you know, what supportscould they bring that you don't
see, because they're kind ofdone behind the scenes? Because
it's, I think it's hard to findresources and support and then
(18:48):
to take something you foundonline and like, apply it to
somewhere where they haven'theard of that. So just see where
they're at right now. And ifthey have programs, great if
they don't, you know, how couldother people support them? I
think peer mentoring could be areally good thing.
Sehrish Shikarpurya (19:08):
You know, I was just thinking about that
peer mentoring and Parent toParent connections, I think for
us that has really thrived isthat when while we don't have
any formalized supports, atleast not until the past two
years, we have now but eventhen, like the parents network
is so strong. And because ofthat the children the individual
(19:28):
network is so strong as well,because they connect, they hang
out, they do things together. SoI would say like find, find
other individuals who who alsocould need extra support, or
that you know of I know for usthere was a whole thing where
one person's wheelchair waspassed down to like for other
(19:49):
people over the course of like a10 year process. And so because
of that they all like bondedreally well. And they kids hang
out and they grew up togetherand things like that. So just
shared experiences like that.
And I also would talk to theleader of the community or
whoever the person heading, itwould be to just be like, hey,
(20:09):
you know, I may have a differentsupport need, is there anything
that you have that you cansupport me with? Or even like,
FYI, I'm, I've, my kid is goingto make like, five different
sounds in the next 30 minutes.
And you just have to be okaywith it, I guess or like, I'm
trying to think of a better wordto say, but like, it is going to
(20:31):
be what it is. And I know this,and I know, we're, you know,
we're taking, we're doing ABAand blah, blah, blah, but I just
am telling you, just so you areaware, so don't come to me five
days later to tell me that thisis happening, because I know it.
And I got it. You know, like, Ithink it'd be interesting for
parents or individuals to takethat step and be like, I know,
(20:53):
it is what it is. And that's itinstead of so then I think it
would limit the top down comingdown and hounding them and be
like, did you know Yes, I doknow, I sit next to my child
every day. I know, like, so.
Sarah Hall (21:08):
Yeah, that's, I love what you're saying about that
how, like, as siblings, we canhelp by saying, he's gonna make
noise, and that's okay. He'sgonna move around. And that's
okay. I, I think there'sdifferent ways to worship and
just kind of reminding everyonethat there are different ways to
be to worship, and that maybethat will make other people feel
(21:31):
more comfortable and invited tothe church as well.
Sehrish Shikarpurya (21:35):
That's such a good point. Yeah, like,
leading by example. Right? Justyeah, it should be this example.
It's not the sitting quietly,it's, it's being you. Yeah.
Chris Berstler (21:46):
I would spirituality impacted by
different parts of one'sidentity, ethnicity, culture and
disability.
Sarah Hall (21:53):
I think sometimes, like with disability, there's
definitely that tension betweenjust who you are, and you know,
you have strengths, you know,you know, you're different than
other people. But who you weremade to be, is different than,
you know, just the norm outthere. And it's different than
(22:14):
what some people say, you shouldbe, you know, and so I think
that's in, in some cultures,it's like, well, you have a
disability because of this. Andlike, there's that, that stigma.
And so it's like, I want to belike, in the Christian faith,
the child of God, I want to dothis, I want to be amongst my
community. But is theresomething wrong with me? So I
(22:37):
think that tension really makesmakes people think about like,
who am I and in a family, like,how do we actually fit into
there?
Sehrish Shikarpurya (22:48):
Yeah, you know, the tensions are very much
evident in my community, aswell, because I think as a
population that had emigrated tothis country, what like maybe 50
years ago, 60 Max, that is stilltrying to figure out where they
fit within the American society,American paradigm. And then to
(23:11):
have another layer ofexclusivity, I think, is really
hard to think about and manage.
And I think that that is veryevident, I think within our
mosques specifically, is thatyou can see that everyone wants
to fit in, but then having achild with a disability somehow
excludes you from the wholescheme of things, according to a
(23:32):
lot of the parents, and thenthey just feel like they don't
fit anywhere. And I think thatalso, and I've also noticed, an
index can be very specific tolike a few cases in my mosque,
but women mothers typically feelmore of the burden. And I don't
know why it's, like, forexample, the I've been told that
(23:54):
they have to dress very modestlyand wear white or do this and do
that because they have a childwith a disability. And I was
like, what so you know, it's,it's this sense of extinguishing
your own desires, because yourchild has a disability, because
you sometimes think that it maybe, you know, caused by God or
(24:16):
by other factors and things likethat. And so I think those
tensions are also very evident,and they could be gender based
ethnicity based racializedexperiences as well. I don't
know how to mitigate them. But Ido know they exist. So it's
really hard sitting with thatfact, I think is to be
(24:37):
vulnerable and be like, thisexists. And I see it every day.
And I'm not sure how to, youknow, disaggregate things from
that big label of disability andjust thinking that things are
wrong, which is not but yeah,education maybe.
Chris Berstler (24:56):
So that I guess that will bring me to the next
question. Well, What resourcesare still lacking in regards to
spiritual supports withindisability communities?
Sarah Hall (25:07):
Well, I know of one specifically is supporting
direct support professionals tofeel comfortable, and to support
somebody spirituality inwhatever way that is. So my, as
I mentioned, my brother Charliewent to church with us every
Sunday, he went to events andall of this stuff. And when he
(25:30):
was in his late teens, he movedto a group home. And after that,
I don't think he stepped foot ina church for maybe 20 years.
Right. And so it's, how do wedeal with that? You know, how do
parents communicate that? Howdoes he communicate, especially
when he, he has more difficultyin communication? You know, he
(25:51):
doesn't have conversations, it'smore of, you know, Question and
Answer with him. And so he doesnot, you know, express his wants
and needs unless it's like,suffers coming up, this is what
I want, I want to eat. But he'snot able to express that on his
own about, hey, I enjoy going tochurch, this is what I enjoy
about it. And so for him, it'sdifficult. So how is that
(26:15):
communication? How are we using,like person centered planning or
person centered approaches, toreally help him find where he
fits in where he belongs,because he did like that when he
was growing up. But once he wasin a group home, he stopped
going, and they didn't, youknow, there was one staff for
(26:37):
two different people, ifsomebody else didn't want to go,
how do you work with that? Howdo you plan? And how do you
support somebody who maybe has afaith different than your own?
And so I think that's somethingwhere we really need to address
and work on that to make surethey know what to do.
Sehrish Shikarpurya (26:54):
That is such a good point. You know, the
amount of times I've heardpeople say, like, exactly what
you're saying, Dr. Hall is crazythat we really need this, and we
don't have enough literaturebase around it. And we don't
have enough support for thedirect professionals to be able
to provide these kinds ofservices. You're so right,
because, you know, one of theparents that I was speaking to
(27:17):
recently, they were saying howtheir child, when he got when he
would get really stressed outlike before a test, he would
recite prayers, and he would inhis class and like high school,
and it'd be loudly. And so theteacher decided that they need
to extinguish this behavior andmake it so that it could be
generalized. And so theindividual then stopped
(27:39):
completely, they didn't do it atthe mosque, they didn't do it
anywhere else. And yes, thatbehavior, extinguish, because it
is maybe embarrassing to dothat. But like, we all have
things that we do before a testto calm ourselves down. And some
of us just stayed in our head,right? That's the only
difference. And so that I thinkhaving that knowledge would have
been so important at that timefor that instructor to then be
able to provide supports thatcould help that individual
(28:03):
manage that. But moreimportantly, just maybe a
different way of calmingthemselves down. And so that's
so important. And I also think,like, even so I work a lot with
transition planning. And I thinkone of the biggest gaps that I
see right now is that we don'thave enough supports or
(28:24):
understanding of how to providecommunity supports that relate
to faith based planning. So wehave community support, it's
like, you know, you can workwithin the ice cream shop that
your uncle owns, or you can, youknow, be located next to a
grocery store. But I don't thinkwe often think about like, is my
sister going to be able totravel independently to the
(28:45):
mosque when I'm not around, ormy mom's not around? Will an
individual be able to work orvolunteer at their mosque or
their church if they would liketo, and we don't consider those
opportunities often, as youknow, like feasible meaningful
employment opportunities.
They're just seen as likeinternship or there's, you know,
the volunteering gig, it's notsomething that people
(29:07):
necessarily see as a full timemeaningful employment. And I
also think, we need to thinkfurther about, you know,
ourselves and our space in theworld as related to our
spirituality, like in terms ofmy sister goes to the mosque
every day. Why? I don't know, Idon't I think it might be
(29:27):
belonging, it might be that shefully believes in it. But if
this is something that shereally wants to do, I wish it
was something that was nurturedand fostered for her for you
know, since she was in middleschool, or earlier, it was
something that she decided to goand we just kind of were like,
okay, cool, let's let's go withthe flow. But it's not something
we necessarily intentionallydid. So I wonder if having that
(29:48):
intention there were to increaseour sense of belonging in that
space.
Sarah Hall (29:53):
Yeah. And I think there are a lot of resources out
there. But how in the world doyou find them?
Sehrish Shikarpurya (29:59):
Yeah
Sarah Hall (30:00):
You know, there's, I'm sure something's been done
for everything. But if it's in alittle pocket here in this state
somewhere in another state, howdo we know about it? How do we
learn what to do? And do we haveto have specialized programs? Or
can there just be a framework ofjust understanding and knowledge
and learn a few things? Butlike, where is that information?
(30:22):
And so kind of bringing that alltogether to educate the faith
communities, the members of thechurch or the faith community,
just to get them on the samepage, I think?
Chris Berstler (30:35):
How might we influence changes in our own
spiritual communities to helpsupport a more inclusive
environment that benefitsindividuals with disabilities?
Sarah Hall (30:43):
I think about one example, with well, Sehrish, she
kind of brought this up of beingan example, kind of showing
people that, you know, this ishow I react when my brother does
something. But then also, whenyou meet other people with
disabilities in your faithcommunity kind of being that
example of, I'm going to go upand say, hi, it's okay to talk
(31:04):
to people. I'm going to sit bythem, I'm going to show everyone
that I am okay with this extranoise. So I think that's just
important to show people thatI'm comfortable with this, you
can be to kind of thing. And Ithink it's also important to ask
questions. And it could just beasking questions of the leaders
(31:26):
of the church, like, you know,what do you do? Have you thought
about this? Is there a place forpeople? And how do you know
that? So kind of starting thoseconversations could influence a
lot of change? I know when I wasyounger, at a church, and I was
a teacher, so they, of course,put me on the Education
Committee. And so they turned tome. And they said, Sarah, is
(31:47):
there anything? You think we'remissing for our goals for the
year? And I was like, Well, youknow, is there a place for
people with disabilities at ourchurch? You know, how are they
welcomed? And just thatquestion, prompted them to,
like, look into it. And theywere like, Well, would you like
to start a friendship ministersprogram? Okay. Not that that's
(32:08):
the only way people can beinvolved. But that's one way
that they could. So I think justbeing there and asking
questions, and being an exampleis very helpful.
Sehrish Shikarpurya (32:18):
That's so great. You know, having that
voice and then startingsomething, and just having so
many other voices, that's soinspiring. You know, for us,
we've done webinars for mosques.
And we had what, like 50-60parents join across the country,
which was kind of nice. We'veand then it was interesting,
because those webinars led tothose parents, forming like a
(32:41):
group me like a massive group,me where they just talk and
share resources and stuff. Andthat was really cool. I think
we've done brochures in the pastare like little flyers of like
disability etiquette for theleadership of the mosque. I
don't know if they read them.
But we produce stuff. I don'tknow if it's in somewhere. But I
(33:05):
mean, we've done these littleefforts. But I think I think I
would love for individuals withdisabilities to also be involved
in this process is for them tobring about change from their
own experiences and their voice.
That would be amazing forsomeone to be like, Hey, this is
who I am. And this is what I do.
And if you want to join and hangout, let's do something, you
(33:25):
know, we have all these camps,and all these programs for
kiddos. But then when you have aperson with a disability, they
have to sign like 20 Safetyforms, and people are more
hesitant for them to be on boardbecause no one wants to take the
responsibility of beingresponsible for making sure this
kid gets from you know, so it'sa lot more layers added to it.
But I wonder it doesn't have tobe something exclusive. If it's
(33:48):
not alright, if it's not easy tobe a part of it. Then like you
said, Dr. Holick createssomething else that's going to
provide that inclusivity andthen invite other people to join
in. I think another thing thatwould be is to not infantilized
individuals. The reason mysister got she my sister is
almost 30. But people still comeup to her and yell at her like
(34:11):
she's a 15 year old 13 year old,you know, so our people, you
know, we will let go the will gosmiles at me all the time. She
must be so happy. I don't know,did you ask her? Have you spoken
to her? Or do you just like waveat her from the far off? You
know, so it would be nice toeducate people on also that
these are individual adults thatour choices and decision making,
(34:33):
and that we don't need to treatthem as a kid. You know, so I
think that would be that wouldbe where I would like to start
next time. I go on a mission todo some change.
Sarah Hall (34:46):
Yes. Yeah. And you You reminded me, I was thinking
of just telling our stories. Andnot that it has to be the story
of Charlie and Sarah but thestory of it could be you know
this In relationship, or itcould be, like other people we
meet. When I was at that church,and I was, I was I wasn't
(35:07):
working with them. I was playingreally, with people with
disabilities and the otherchurch members, I met this young
man, David, and he had gone tochurch there already. But when
he went to church, he went withhis mom and dad, and he was very
quiet. He's, you know, was like,velcroed to their side the whole
time, I think he said hello tolike, the pastor of the church,
(35:29):
but he didn't really talk toanyone else. It was like in sit
out. But then after he had beenin the group, with everyone
else, he came to an event. Andhe was, of course, right by his
mom, velcroed. To her side, hesaw me. And he quickly Annville
killed himself. He quicklywalked to me and was like, Hi,
(35:50):
Sarah, how are you? And I wasjust like, that is awesome. That
is amazing. Like, you could seehis face light up. And I was
just like, This is so good. AndI thought, oh, my gosh, it's not
me helping him. He's making mebelong in the church. I feel
(36:11):
like I'm a part of the churchbecause of him. So making sure
people hear those stories. Andlike you said, having people
with disabilities in thosedifferent positions, I think,
can make a huge difference.
Chris Berstler (36:25):
How has the pandemic impacted individuals
with disabilities within faithbased communities,
Sarah Hall (36:31):
just being less connected, I would say, because
maybe you just haven't seenpeople. And even participating
via video, a lot of that'spassive participation, maybe
just watching something, or alot of it's language based. And
so for my brother who doesn'thave conversations, that would
(36:51):
be very difficult. Because he,he needs to be able to do
something with people to be withthem to maybe serve in a
meaningful way. Maybe he's theone helping set the table. And
he has a valued role in thecongregation because he's doing
something. But it's verydifficult to be a part of like
language based activities likethat. So I feel there are some
(37:14):
people out there who just feelless connected right now.
Sehrish Shikarpurya (37:17):
Yeah, I would say that too. That's my
experience as well, I'm lessconnected. And I think it could
also lead to like forgettingabout some of the rituals and
some of the sayings and prayersand stuff because you're not
doing them as often. And then Ithink the major thing for us was
that social aspect justdisappeared from their lives
(37:38):
completely. In addition toeverything else, you know, it
was just like, they had this oneplace that they would go to, and
it just it just kind ofdisappeared. And I think it's
also coming back into it, Ithink it was a little more
difficult. I think the wholemask, the mask mandate prevented
a lot of some of my, some of theindividuals I work with from
(38:00):
coming in to the mosque. Andthen I think, with that even
those who could, you know, wearmasks and things like that they
things had changed, like youcouldn't drink the holy water
anymore, or you couldn't shakepeople's hands. And you couldn't
give people hugs. And so thatreally transformed the
experience for them intosomething that was more based on
(38:22):
individual aspects of the ritualmore than the communal. And
that's that was a lesson for metoo. I was like, wow, I didn't
realize how much you reallyliked being with the community.
So that was great to see. Ithink also, I would say it's, it
was harder for a lot of theparents as well, because a lot
of the mosque, the mosque timewas used as respite. And so that
(38:47):
was really difficult. But I'veseen a lot of people just get
back into the swing of thingsnow. So I mean, we still have a
masked mandate and things likethat, but I think they're very
excited to to get back into it.
And be part of the communityagain,
Chris Berstler (39:06):
what words of encouragement or advice might
you have for any siblings in themidst of their own spiritual
journeys?
Sarah Hall (39:13):
I think I would say that it is okay to be where
you're at. We're all on our ownjourney. There's no specific
journey you have to be on. Youdon't have to be like others.
And it's okay to have a journeywith your sibling or just a
journey on your own. So I thinkit's you need to think about
kind of who you are, what youneed, and, and be okay with that
(39:38):
and be okay with, you know what,I'm not quite okay right now, or
I would like to be moreinvolved. I feel guilty. I went
through those times as well. Butit was those who are good for me
because I could feel the poll. Icould feel myself missing that
aspect of my life. And so, forme, it was a chance to to
(39:58):
understand that it was Real,that it was something that was
really important to me. So Iwould just say you're okay. And
do it your way.
Sehrish Shikarpurya (40:10):
I love that I wish someone told me this when
I was a teenager because I thinkit would have would have
developed. You know, I thinkthat in addition to what Dr.
Hall suggested, I think it's notyou, you think it's you, you
think it's the way you're doingthings, or it's, it's not you,
(40:31):
it's just the way societyfunctions sometimes. And it's
okay to step away from it. Ifyou need a break, and you can,
you can come back to it, it'sokay to be in it the whole time.
And I think there's a lot ofspace in faith and spirituality
for you to exist alongside yoursibling with a disability. So
(40:52):
you don't have to do thedisability work within the faith
space, if that's not your thing.
And if it's overwhelming at thetime, there's a lot of space
where you can contribute and youcan belong and find inclusive
spaces. And another thing Iwould say is, let your sibling
be. I when I was younger, I waslike, Man, I wish he would just
(41:14):
conform. I wish he would just dothis. I wish it was easier. And
honestly, I let her be and itwas the best because I was like
this is what it is. And I'm justgonna let you do you. And I will
do me and we will go day to dayin that was really helpful.
Chris Berstler (41:32):
Thank you so much for taking the time being
with us today and sharingeverything. I'm sure there's
going to be a lot of sibs outthere who are going to get so
much from this. So reallyappreciate your time. Thank you
so much.
Sarah Hall (41:44):
Yeah, thank you, too.
Sehrish Shikarpurya (41:45):
Thank you for having us. We appreciate it.
Chris Berstler (41:49):
Find the resources, tools and information
about the sibling experience onsibling leadership.org. The
sibling Leadership Network is anonprofit and we rely on support
from our audience. Find thedonation button on our homepage
and contribute to the evergrowing sibling movement.
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