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:
In this episode:
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:
In this episode:
Welcome to the sibling Leadership Network podcast. The sibling Leadership Network is a national nonprofit whose mission is to provide siblings of individuals with disabilities the information support and tools to advocate with their brothers and sisters and to promote the issues important to us and our entire families. Hello, and thank you for tuning in for another episode of the SLN Podcast. Today we will be discussing spirituality for sibs, and supports for our siblings with disabilities to participate in faith based communities. I would like to welcome our guests Dr. Sarah Hall from the Institute of community integration University of Minnesota and Texas a&m doctoral students, Sehrish Shikarpurya. Thank you for joining us today.
Sarah Hall:No, thank you for having us.
Chris Berstler:I'd like to just start off and ask you to please introduce yourselves and anything important about yourself. So you'd like everybody to know.
Sarah Hall:Okay. Well, I am Sarah Hall. And like you said, I'm from the Institute on Community Integration. And I am a researcher there. I did kind of grow up in different disability fields where I was a high school special education teacher. I was a professor for many years in special education, and now I get to do research and other projects. So I do have one, I have two brothers, but one has multiple disabilities. And they're more significant, I guess 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:Thanks, Sarah for sharing. Hi, everyone. My name is Sehrish. I'm a third year doctoral student at Texas a&m. Specifically, I'm researching transition to adulthood outcomes for racially minoritized populations living in the United States, focusing on what are some of their strengths, and what are some of the ways in which they navigate the transition world, a world that typically hasn't been designed for them or by them. I am a sibling of Shazia, who is my little sister, little as in she's only one year younger than me. She was diagnosed with autism in middle school, which is quite late. And it could be due to a that she is a female and a lot of the symptoms or some technology we just didn't identify or think about early on, she is currently working. And I'll go into my sister later, I feel like I start with her. And then that's kind of where I go. So that's a little bit about me.
Chris Berstler:Thank you very much for sharing, How has being a sibling of an individual with a disability shaped your spiritual journey and perspective.
Sarah Hall:I think for me, I've, I've noticed the gifts that other people have more often and you know, some of those hidden gifts are the ones that are smaller, but are really impactful. Because I've seen like in my brother, how how, like the light just kind of shines from him or he'll sing or he'll he's very empathetic. But not everyone knows that you can't see it. And I think I've been more comfortable with different ways of worshipping. Just because I see my brother doing it different. I'm okay with others doing a different I'm okay with hearing things or seeing things different if somebody's moving a lot. And so I think it's just having a more comfort in a variety of approaches really, and I think even felt more of a call to service and I don't know if it's because of my brother and my our situation or just who I am. I like to do the serving part I enjoy like doing hard work. Sometimes I'm okay with the boring work, but just to support others and work alongside them.
Sehrish Shikarpurya:You know, my journey similar. And my experiences have been similar to Dr. halls as well and that I think my sibling and I'm I identify as a Muslim. And so within my mosque space, I've seen my sister really thrive. And some of the ways in which she decides to pray or decides to call on to Allah, I've seen her sort of thrive in that space. And I think it's kind of inspired me to work within my mosque as well. I do a lot of work with our special needs that we call our special needs. Community, individuals with disabilities and they range from like ages three all the way up to like 6570 However, I think for me, I've also become over the years as a teenager, I was very reluctant to work in the mosques space because I saw a lot of exclusionary practices with my sister, and others and I kind of rejected religion a lot for quite a while because I thought it wasn't a space where me and my family could thrive or felt like we belonged even though we prayed every day for the belongingness and being kind to our neighbors and all those other things. However, I think over time her resilience has really inspired me to continue being part of a faith community. I think despite of the things that she gets told, despite the looks that she gets, despite all of those things, I think she's still there every day. For example, this is a holy month for us. It's Ramadan. And we have like a night of power that we call where we pray the whole night. And so she's leaving work early, to go pray all night, and then work the next day, while knowing that when she prays really loudly, people will sort of come to her and tell her to stop being loud, or to stop moving her body too much, or stop using the rosary beads too loud. So like her dedication is inspiring for me and kind of uplifting me in my own faith journey as well.
Chris Berstler:Awesome. Thank you both for sharing. What challenges do individuals with disabilities face within faith based communities?
Sarah Hall:Well, you were saying just dove right into some of the things that initially I think about, like one of the initial challenges I think about are those looks, those comments, those things. And as a family, how much tolerance do you have for that kind of? It feels like a push back really, to you? So I think it's like, initially that family's comfort level in being in the area. And then, you know, is there a place for you there? Not that there has to be a special place. But is there any place for you there? When I was very young, we had to switch churches, I grew up in the Methodist church, my family's Christian. And when my brother got old enough, which may have been around preschool, kindergarten, somewhere around there, his differences were different enough where they didn't know what to do. And so they they told him, he couldn't come. And so we had to change churches. And so for me, like, is there a place? And I know a lot of people talk about, like, oh, being inclusive is the best for everyone. But right now, I think having like that, like a continuum of places to where, where does the family, where does the person feel comfortable, because I think that's such a challenge, where it's, we don't have that place. And I remember when I was younger, and I went to a different church, I helped start like a friendship ministries program for people with and without disabilities. And so we had people come to church, who had never been to our church before. And they met our church members and started, and I was like, This is great. But in my head there was that back and forth of was it inclusive enough, you know, my plan was to say, Okay, you start here, and then you can get more involved. But they loved it, they had a place. And so I think that was something that was and still is a barrier for a lot of people. And also sitting quiet for so long. Who can do that without moving without coughing without looking around? Ah, that's so difficult to do.
Sehrish Shikarpurya:Ya, you know, I'm very, very similar in my religious space, as well. And it just, I think, I think the biggest challenge has to be the top down, for me, particularly, is leadership. So the way our mosques works is that there's different leaders that are designated towards each mosque. And so like, recently, I remember I got a call from one of the leaders saying, this child is making too many verbal, loud sounds, and everyone's coming to me and saying, We should put this child in the back, we should put this and he's like, I don't want to do that, because he himself thinks he's being inclusive. But at the same time, he keeps calling the family to tell them that their child is loud. And to the point where the fam, every time he calls a family, the mom picks up and says, Are you calling me because my kid was loud again. And you know, it just really makes me think about what what are we doing from the top down in terms of preventing these challenges? Why is it that the individual who's loud, is told to stop doing that, but the congregation members aren't actually invited to be more inclusive or be like, hey, that's okay. I mean, the elderly are quite loud within our mosque as well. And nobody really tells them to stop. people's phones go off, and no one really cares. So why is it that this individual is being pushed by society as well as the inclusive mosque space to be conforming to a certain ideal? And so I think that's one of the challenges that I've really had going back and forth is that we push for inclusion from the bottom up, and then at the top level, it's kind of like, well, it is what it is, or sometimes we don't have those individuals here, which is not true. I know for us, a lot of the stereotype is also very evident within our mosque and the feelings that we get about people with disabilities is a lot of stigma attached to it. A lot of parents and even my mom sometimes like they'll tell me like, I feel embarrassed. cuz people look at me, I feel embarrassed because people want to hush my kid, I feel embarrassed because, like people have gone up to my sister and told her things, but my mom was sometimes I think reluctant to defend her because she wanted her to step up and do that. But at the same time, they don't want to be identified as a person with a disability, because there's a lot of hush hush, like, there's something off, we don't know what it is, we will not label it. But we will just kind of be hush about it and not say that it's a disability or like, say that it's something that we're thinking about or continuing to work on. So that's kind of been my challenge as well.
Sarah Hall:Yeah, I think the understanding of others have, that it's okay to make noises. I was, I was actually at the gym last night, and there was somebody who, I believe had autism, and making louder noises. My first fear was, don't take him out. You know, don't get him, you know, don't take him to the parking lot. Like, let him stay here. Let people get used to hearing things, let people be okay with him. He was sitting on a mat, rocking back and forth bouncing off of a ball that was behind him. Let people be okay with that, the more they see him as a person. And the more others people like they interact with them, like, that's going to help people become included.
Sehrish Shikarpurya:Yeah, absolutely. And I think sometimes the challenge is also maybe the fear of backlash. And I think if you're afraid of congregation members not coming, because a certain person is loud, or certain person behaves differently than you, then like, so be it let them find a different congregation. Like why like not? Why take out the one person that comes every time for for people who have a problem? I don't know what that. But that's kind of where my sentiments lie.
Chris Berstler:Yeah. What are some potential benefits individuals with disabilities and their siblings may experience from being a part of a faith based community.
Sarah Hall:For me growing up, it was really the shared experience that my brother and I and our other brother had with going to church together because all of our other activities were separate. But this was something where we could do it all together. We had like the shared traditions, you know, we could talk about it. And that it just paint. I mean, obviously, it's a part of our lives, but it it really brought us closer together. And I think even one benefit, which I'll tell you sometimes didn't feel like a benefit, but Charlie loved the music. It was calming to him. He you know, he could just listen to it. And it's just sue Tim. And he for some reason, love the song Silent Night. And I'll tell you what, we heard that song hummed every day, throughout the entire year, for years and years straight. But to this day, that's like one of my favorite songs. When it comes to like Christmas Eve, and everyone's singing it. I can't sing that whole song. Because it's so meaningful to me, I get choked up, because that's Charlie, that's us doing things together. And so for me, that was a really big part of sharing our spirituality.
Sehrish Shikarpurya:Yeah, that is that remote. Yeah, that is so similar to my experience as well. Because my my sister, and I think it did bring us together. And I think, for her, it was something that was hers that she could do. And it was a scheduled and thing that she did every day. So she didn't have to think about it. It was just something she did she went every day did the same exact routine. Does my sister believe in God? And Does she understand the prophet hood? And all of that? I don't know. But is she going to sit there and pray her heart out every day? Absolutely. And I think that matters, and it does bring us together. And I think it honestly made me feel less guilty about activities that I was doing away from her. Because some of them she couldn't be, or she didn't want to, or I growing up didn't want her to be a part of them. And so this was a space where I felt like we could still do things together have shared experiences, and also, like be together like a family. I think it also provided her with a lot of social support. Like she didn't have a lot of friends growing up. So this was a place where she could at least have acquaintances and say hi to people and feel like she belonged in a in a larger space. Yeah, that
Sarah Hall:social part is is important too. Even though my brother Charlie, I don't think he had any actual friends at church. But for me as a sibling to see that people accepted him because he came you know, every single week he was there and he was with our family. Just to know that they they welcomed him and accepted him like I felt myself like breathing deeply like, ah, like almost relief like okay, there's this One environment where I don't have to, like, keep my guard up, like I can actually relax in this environment, because I know that they're gonna treat them. All right,
Chris Berstler:how can we support our siblings who expressed an interest in being a part of faith based community?
Sarah Hall:That's a good question. I guess it depends on where they're at, if they've been a part of it their whole life and just want to try something else out, or if they just want to, they're interested in like dipping their toe in because I think just talking about it, like describing what actually happens, prepare them to say, you know, like, what do you do there? You know, what would you say to people when you arrived, making sure that they're comfortable and having like, an idea of what goes on. And I think just trying different things in different ways, like, because not everyone can go to like, in my Methodist church, we had a service every Sunday morning, not everyone feels the most, you know, belonging or that it just doesn't hit them, as well as maybe there's a Wednesday night service, maybe there's the choir they want to be in, or they want to do service or something like that. So I think, like figuring out who they are, and what's a good way to kind of try things out a little bit.
Sehrish Shikarpurya:I definitely really liked that. Because just having that, like, pre conversation would be really cool to see like, why we're What do you want to do? Do you want to pray in the back? Do you want to 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 think in addition to that, I also wonder if it would be beneficial for at least for my sister to take on leadership roles within the mosque, like, you know, for us, anybody can, you know, sing the holy songs, anybody can recite the prayers, you just have to like book an appointment, essentially, in advance. And so I would love for her to do that. I think she used to do that when she was younger. And then people just told her all of the things that she wasn't doing right when doing that, 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 she kind of veered off from that, that would encourage her to take more leadership positions, even to be a part of the special needs classes and teach some of them I think that would be really cool. Now that she's older, and honestly, like, I think even think about like when she gets older. If she lives somewhere else one day by herself, like, does she want to be close to this mosque? Is it this specific one? Is she going to go to a different one, I think there'll be a whole change if you were to go to a different one. So that'd be interesting to talk about as well.
Sarah Hall:Yeah, and I think also for my brother, like making sure to connect him with let me call him nice people. Like they don't have to have special skills 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 not that anyone's assigned to him, but just to connect them to people to support him throughout. So it's, it's more of a community based thing for him?
Chris Berstler:What supports and resources can you recommend for anyone wishing to help their siblings thrive in a faith based community?
Sarah Hall:You know, what I would just first check with, like, the people at either the church or mosque or wherever you're at to see what's going on right now? What do they know? What, you know, what supports could they bring that you don't see, because they're kind of done behind the scenes? Because it's, I think it's hard to find resources and support and then to take something you found online and like, apply it to somewhere where they haven't heard of that. So just see where they're at right now. And if they have programs, great if they don't, you know, how could other people support them? I think peer mentoring could be a really good thing.
Sehrish Shikarpurya:You know, I was just thinking about that peer mentoring and Parent to Parent connections, I think for us that has really thrived is that when while we don't have any formalized supports, at least not until the past two years, we have now but even then, like the parents network is so strong. And because of that the children the individual network is so strong as well, because they connect, they hang out, they do things together. So I would say like find, find other individuals who who also could need extra support, or that you know of I know for us there was a whole thing where one person's wheelchair was passed down to like for other people over the course of like a 10 year process. And so because of that they all like bonded really well. And they kids hang out and they grew up together and things like that. So just shared experiences like that. And I also would talk to the leader of the community or whoever the person heading, it would be to just be like, hey, you know, I may have a different support need, is there anything that you have that you can support me with? Or even like, FYI, I'm, I've, my kid is going to make like, five different sounds in the next 30 minutes. And you just have to be okay with it, I guess or like, I'm trying to think of a better word to say, but like, it is going to be what it is. And I know this, and I know, we're, you know, we're taking, we're doing ABA and blah, blah, blah, but I just am telling you, just so you are aware, so don't come to me five days later to tell me that this is happening, because I know it. And I got it. You know, like, I think it'd be interesting for parents or individuals to take that step and be like, I know, it is what it is. And that's it instead of so then I think it would limit the top down coming down and hounding them and be like, did you know Yes, I do know, I sit next to my child every day. I know, like, so.
Sarah Hall:Yeah, that's, I love what you're saying about that how, like, as siblings, we can help by saying, he's gonna make noise, and that's okay. He's gonna move around. And that's okay. I, I think there's different ways to worship and just kind of reminding everyone that there are different ways to be to worship, and that maybe that will make other people feel more comfortable and invited to the church as well.
Sehrish Shikarpurya:That's such a good point. Yeah, like, leading by example. Right? Just yeah, it should be this example. It's not the sitting quietly, it's, it's being you. Yeah.
Chris Berstler:I would spirituality impacted by different parts of one's identity, ethnicity, culture and disability.
Sarah Hall:I think sometimes, like with disability, there's definitely that tension between just who you are, and you know, you have strengths, you know, you know, you're different than other people. But who you were made to be, is different than, you know, just the norm out there. And it's different than what some people say, you should be, you know, and so I think that's in, in some cultures, it's like, well, you have a disability because of this. And like, there's that, that stigma. And so it's like, I want to be like, in the Christian faith, the child of God, I want to do this, I want to be amongst my community. But is there something wrong with me? So I think that tension really makes makes people think about like, who am I and in a family, like, how do we actually fit into there?
Sehrish Shikarpurya:Yeah, you know, the tensions are very much evident in my community, as well, because I think as a population that had emigrated to this country, what like maybe 50 years ago, 60 Max, that is still trying to figure out where they fit within the American society, American paradigm. And then to have another layer of exclusivity, I think, is really hard to think about and manage. And I think that that is very evident, I think within our mosques specifically, is that you can see that everyone wants to fit in, but then having a child with a disability somehow excludes you from the whole scheme of things, according to a lot of the parents, and then they just feel like they don't fit anywhere. And I think that also, and I've also noticed, an index can be very specific to like a few cases in my mosque, but women mothers typically feel more of the burden. And I don't know why it's, like, for example, the I've been told that they have to dress very modestly and wear white or do this and do that because they have a child with a disability. And I was like, what so you know, it's, it's this sense of extinguishing your own desires, because your child has a disability, because you sometimes think that it may be, you know, caused by God or by other factors and things like that. And so I think those tensions are also very evident, and they could be gender based ethnicity based racialized experiences as well. I don't know how to mitigate them. But I do know they exist. So it's really hard sitting with that fact, I think is to be vulnerable and be like, this exists. And I see it every day. And I'm not sure how to, you know, disaggregate things from that big label of disability and just thinking that things are wrong, which is not but yeah, education maybe.
Chris Berstler:So that I guess that will bring me to the next question. Well, What resources are still lacking in regards to spiritual supports within disability communities?
Sarah Hall:Well, I know of one specifically is supporting direct support professionals to feel comfortable, and to support somebody spirituality in whatever way that is. So my, as I mentioned, my brother Charlie went to church with us every Sunday, he went to events and all of this stuff. And when he was in his late teens, he moved to a group home. And after that, I don't think he stepped foot in a church for maybe 20 years. Right. And so it's, how do we deal with that? You know, how do parents communicate that? How does he communicate, especially when he, he has more difficulty in communication? You know, he doesn't have conversations, it's more of, you know, Question and Answer with him. And so he does not, 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's not able to express that on his own about, hey, I enjoy going to church, this is what I enjoy about it. And so for him, it's difficult. So how is that communication? How are we using, like person centered planning or person centered approaches, to really help him find where he fits in where he belongs, because he did like that when he was growing up. But once he was in a group home, he stopped going, and they didn't, you know, there was one staff for two different people, if somebody else didn't want to go, how do you work with that? How do you plan? And how do you support somebody who maybe has a faith different than your own? And so I think that's something where we really need to address and work on that to make sure they know what to do.
Sehrish Shikarpurya:That is such a good point. You know, the amount of times I've heard people say, like, exactly what you're saying, Dr. Hall is crazy that we really need this, and we don't have enough literature base around it. And we don't have enough support for the direct professionals to be able to provide these kinds of services. You're so right, because, you know, one of the parents that I was speaking to recently, they were saying how their child, when he got when he would get really stressed out like before a test, he would recite prayers, and he would in his class and like high school, and it'd be loudly. And so the teacher decided that they need to extinguish this behavior and make it so that it could be generalized. And so the individual then stopped completely, they didn't do it at the mosque, they didn't do it anywhere else. And yes, that behavior, extinguish, because it is maybe embarrassing to do that. But like, we all have things that we do before a test to calm ourselves down. And some of us just stayed in our head, right? That's the only difference. And so that I think having that knowledge would have been so important at that time for that instructor to then be able to provide supports that could help that individual manage that. But more importantly, just maybe a different way of calming themselves down. And so that's so important. And I also think, like, even so I work a lot with transition planning. And I think one of the biggest gaps that I see right now is that we don't have enough supports or understanding of how to provide community supports that relate to faith based planning. So we have community support, it's like, you know, you can work within the ice cream shop that your uncle owns, or you can, you know, be located next to a grocery store. But I don't think we often think about like, is my sister going to be able to travel independently to the mosque when I'm not around, or my mom's not around? Will an individual be able to work or volunteer at their mosque or their church if they would like to, and we don't consider those opportunities often, as you know, like feasible meaningful employment opportunities. They're just seen as like internship or there's, you know, the volunteering gig, it's not something that people necessarily see as a full time meaningful employment. And I also think, we need to think further about, you know, ourselves and our space in the world as related to our spirituality, like in terms of my sister goes to the mosque every day. Why? I don't know, I don't I think it might be belonging, it might be that she fully believes in it. But if this is something that she really wants to do, I wish it was something that was nurtured and fostered for her for you know, since she was in middle school, or earlier, it was something that she decided to go and we just kind of were like, okay, cool, let's let's go with the flow. But it's not something we necessarily intentionally did. So I wonder if having that intention there were to increase our sense of belonging in that space.
Sarah Hall:Yeah. And I think there are a lot of resources out there. But how in the world do you find them?
Sehrish Shikarpurya:Yeah
Sarah Hall:You know, there's, I'm sure something's been done for everything. But if it's in a little pocket here in this state somewhere in another state, how do we know about it? How do we learn what to do? And do we have to have specialized programs? Or can there just be a framework of just understanding and knowledge and learn a few things? But like, where is that information? And so kind of bringing that all together to educate the faith communities, the members of the church or the faith community, just to get them on the same page, I think?
Chris Berstler:How might we influence changes in our own spiritual communities to help support a more inclusive environment that benefits individuals with disabilities?
Sarah Hall:I think about one example, with well, Sehrish, she kind of brought this up of being an example, kind of showing people that, you know, this is how I react when my brother does something. But then also, when you meet other people with disabilities in your faith community kind of being that example of, I'm going to go up and say, hi, it's okay to talk to people. I'm going to sit by them, I'm going to show everyone that I am okay with this extra noise. So I think that's just important to show people that I'm comfortable with this, you can be to kind of thing. And I think it's also important to ask questions. And it could just be asking questions of the leaders of the church, like, you know, what do you do? Have you thought about this? Is there a place for people? And how do you know that? So kind of starting those conversations could influence a lot of change? I know when I was younger, at a church, and I was a teacher, so they, of course, put me on the Education Committee. And so they turned to me. And they said, Sarah, is there anything? You think we're missing for our goals for the year? And I was like, Well, you know, is there a place for people with disabilities at our church? You know, how are they welcomed? And just that question, prompted them to, like, look into it. And they were like, Well, would you like to start a friendship ministers program? Okay. Not that that's the only way people can be involved. But that's one way that they could. So I think just being there and asking questions, and being an example is very helpful.
Sehrish Shikarpurya:That's so great. You know, having that voice and then starting something, and just having so many other voices, that's so inspiring. You know, for us, we've done webinars for mosques. And we had what, like 50-60 parents join across the country, which was kind of nice. We've and then it was interesting, because those webinars led to those parents, forming like a group me like a massive group, me where they just talk and share resources and stuff. And that was really cool. I think we've done brochures in the past are like little flyers of like disability etiquette for the leadership of the mosque. I don't know if they read them. But we produce stuff. I don't know if it's in somewhere. But I mean, we've done these little efforts. But I think I think I would love for individuals with disabilities to also be involved in this process is for them to bring about change from their own experiences and their voice. That would be amazing for someone to be like, Hey, this is who I am. And this is what I do. And if you want to join and hang out, let's do something, you know, we have all these camps, and all these programs for kiddos. But then when you have a person with a disability, they have to sign like 20 Safety forms, and people are more hesitant for them to be on board because no one wants to take the responsibility of being responsible for making sure this kid gets from you know, so it's a lot more layers added to it. But I wonder it doesn't have to be something exclusive. If it's not alright, if it's not easy to be a part of it. Then like you said, Dr. Holick creates something else that's going to provide that inclusivity and then invite other people to join in. I think another thing that would be is to not infantilized individuals. The reason my sister got she my sister is almost 30. But people still come up to her and yell at her like she's a 15 year old 13 year old, you know, so our people, you know, we will let go the will go smiles 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 wave at her from the far off? You know, so it would be nice to educate people on also that these are individual adults that our choices and decision making, and that we don't need to treat them as a kid. You know, so I think that would be that would be where I would like to start next time. I go on a mission to do some change.
Sarah Hall:Yes. Yeah. And you You reminded me, I was thinking of just telling our stories. And not that it has to be the story of Charlie and Sarah but the story of it could be you know this In relationship, or it could be, like other people we meet. When I was at that church, and I was, I was I wasn't working with them. I was playing really, with people with disabilities and the other church members, I met this young man, David, and he had gone to church there already. But when he went to church, he went with his 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 to like, the pastor of the church, but he didn't really talk to anyone else. It was like in sit out. But then after he had been in the group, with everyone else, he came to an event. And he was, of course, right by his mom, velcroed. To her side, he saw me. And he quickly Annville killed himself. He quickly walked to me and was like, Hi, Sarah, how are you? And I was just like, that is awesome. That is amazing. Like, you could see his face light up. And I was just like, This is so good. And I thought, oh, my gosh, it's not me helping him. He's making me belong in the church. I feel like I'm a part of the church because of him. So making sure people hear those stories. And like you said, having people with disabilities in those different positions, I think, can make a huge difference.
Chris Berstler:How has the pandemic impacted individuals with disabilities within faith based communities,
Sarah Hall:just being less connected, I would say, because maybe you just haven't seen people. And even participating via video, a lot of that's passive participation, maybe just watching something, or a lot of it's language based. And so for my brother who doesn't have conversations, that would be very difficult. Because he, he needs to be able to do something with people to be with them to maybe serve in a meaningful way. Maybe he's the one helping set the table. And he has a valued role in the congregation because he's doing something. But it's very difficult to be a part of like language based activities like that. So I feel there are some people out there who just feel less connected right now.
Sehrish Shikarpurya:Yeah, I would say that too. That's my experience as well, I'm less connected. And I think it could also lead to like forgetting about some of the rituals and some of the sayings and prayers and stuff because you're not doing them as often. And then I think the major thing for us was that social aspect just disappeared from their lives completely. In addition to everything else, you know, it was just like, they had this one place that they would go to, and it just it just kind of disappeared. And I think it's also coming back into it, I think it was a little more difficult. I think the whole mask, the mask mandate prevented a lot of some of my, some of the individuals I work with from coming in to the mosque. And then I think, with that even those who could, you know, wear masks and things like that they things had changed, like you couldn't drink the holy water anymore, or you couldn't shake people's hands. And you couldn't give people hugs. And so that really transformed the experience for them into something that was more based on individual aspects of the ritual more than the communal. And that's that was a lesson for me too. I was like, wow, I didn't realize how much you really liked being with the community. So that was great to see. I think also, I would say it's, it was harder for a lot of the parents as well, because a lot of the mosque, the mosque time was used as respite. And so that was really difficult. But I've seen a lot of people just get back into the swing of things now. So I mean, we still have a masked mandate and things like that, but I think they're very excited to to get back into it. And be part of the community again,
Chris Berstler:what words of encouragement or advice might you have for any siblings in the midst of their own spiritual journeys?
Sarah Hall:I think I would say that it is okay to be where you're at. We're all on our own journey. There's no specific journey you have to be on. You don't have to be like others. And it's okay to have a journey with your sibling or just a journey on your own. So I think it's you need to think about kind of who you are, what you need, and, and be okay with that and be okay with, you know what, I'm not quite okay right now, or I would like to be more involved. I feel guilty. I went through those times as well. But it was those who are good for me because I could feel the poll. I could feel myself missing that aspect of my life. And so, for me, it was a chance to to understand that it was Real, that it was something that was really important to me. So I would just say you're okay. And do it your way.
Sehrish Shikarpurya:I love that I wish someone told me this when I was a teenager because I think it would have would have developed. You know, I think that in addition to what Dr. Hall suggested, I think it's not you, you think it's you, you think it's the way you're doing things, or it's, it's not you, it's just the way society functions sometimes. And it's okay to step away from it. If you need a break, and you can, you can come back to it, it's okay to be in it the whole time. And I think there's a lot of space in faith and spirituality for you to exist alongside your sibling with a disability. So you don't have to do the disability work within the faith space, if that's not your thing. And if it's overwhelming at the time, there's a lot of space where you can contribute and you can belong and find inclusive spaces. And another thing I would say is, let your sibling be. I when I was younger, I was like, Man, I wish he would just conform. I wish he would just do this. I wish it was easier. And honestly, I let her be and it was the best because I was like this is what it is. And I'm just gonna let you do you. And I will do me and we will go day to day in that was really helpful.
Chris Berstler:Thank you so much for taking the time being with us today and sharing everything. I'm sure there's going to be a lot of sibs out there who are going to get so much from this. So really appreciate your time. Thank you so much.
Sarah Hall:Yeah, thank you, too.
Sehrish Shikarpurya:Thank you for having us. We appreciate it.
Chris Berstler:Find the resources, tools and information about the sibling experience on sibling leadership.org. The sibling Leadership Network is a nonprofit and we rely on support from our audience. Find the donation button on our homepage and contribute to the ever growing sibling movement.