Indispensable People
Making the Gospel Accessible to people of ALL abilities so that they may know Christ, grow in Him, and serve Him with the gifts He has given them.
Indispensable People
When Your Sibling Has a Disability: The Hug and Slug Relationship
Siblings of people with disabilities navigate complex emotional terrain while developing extraordinary character strengths through their family experiences. Over 4 million Americans are brothers and sisters of people with developmental disabilities, forming a significant yet often overlooked population.
• The sibling relationship when disability is involved can be described as "ambivalence" - a heightened version of the normal "hugging and slugging" dynamic
• Siblings frequently experience guilt, jealousy, frustration, and feelings of isolation that need validation and safe spaces for expression
• Churches must be careful not to make siblings invisible while focusing on disability inclusion initiatives
• Despite challenges, most siblings develop exceptional patience, compassion, and empathy through their experiences
• Effective ministry requires seeing and supporting the whole family, not just the member with a disability
• Churches can provide respite care and dedicated sibling programs to create supportive communities
• It's important to ensure siblings aren't overburdened as "emotional support humans" by providing adequate volunteer support
For deeper dives into these topics, check out indispensable-people.com and the books "The Indispensable Kid" and "Gospel Accessibility and the Indispensable People" on Amazon.
Hi, my name is Tracy Correll and welcome to Indispensable People. I'm a wife, mom, teacher, pastor and missionary, and I believe that every person should have the opportunity to know Christ, grow in Him and serve Him with the gifts that he has given, no matter their ability. Over 65 million Americans have a disability. That's 25% of the population. However, over 80% of them are not inside the walls of our church. Let's dive into those hard topics biblical foundations, perceptions and world-changing ideas. Hey, hey, and welcome to this episode of Indispensable People. Today we're talking about siblings, and in the United States, somewhere between 1.2 and 1.6 of the total population have developmental disabilities. That's a whole lot of people, and that's only developmental disabilities. That's not the whole gamut of what we could be talking about today, but, as most of those people likely have siblings, so there are at least 4 million brothers and sisters of people with developmental disabilities in the United States alone, and that number is larger than populations of cities like Los Angeles, chicago or states like Oregon, connecticut, oklahoma or Nevada.
Speaker 1:Now, this is also from a book called the Sibling Survival Guide and it was written quite a few years ago, so I would even say that those numbers are much, much higher. The author of that book. It is edited by Don Meyer and Emily Hall and the foreword is by Rachel Simon. Again, it's called the Sibling Survival Guide. We're going to highlight some things from that book today, but we're also going to talk about the realness of a sibling relationship when you are impacted by disability, and so we're going to dive into those. Today we're going to look at the good, the bad and the ugly of all of the pieces and parts, because this actual sibling survival guide is written for adults, so those that are grown now and have to consider what might happen to their brothers and sisters as they get older and what their responsibility is in that relationship. And I love how the book goes on to say that there is kind of a one word description for the sibling relationship and that is ambivalence. And it's very, very funny to me because I feel like this is a very common. Every single sibling relationship that I have ever seen. You have a love-hate feeling at sometimes, right, and this book refers to that love-hate as hugging and slugging. So you have that within all of your siblings, regardless of their ability. But when you put the theme of disability and the reality of disability into those relationships, you intensify both of those things. So here's some testimonials from the book that talk about how the siblings feel. And so, for example, I love my sister Lauren the way that she is, but sometimes I wonder why she is the way that she is is, but sometimes I wonder why she is the way that she is.
Speaker 1:My brother was in bed after surgery. I had to help him. I had to get him a bottle to pee in, and I had to do it when my friends were over and I feel guilty about that. So like he hated it, he didn't like it, but he knew he had to do it because he needed help, but he feels bad about it. And then here's another one how often have we been ignored for the needs of our sibling? How many of us push harder than one would think necessary to get our parents' attention and approval? So there are lots of dynamics. So they have the guilty feeling, they have the jealousy feeling. There are also struggles of feeling kind of like the double standard.
Speaker 1:And I can tell you from personal experience, not as a sibling but as a parent of a child with a disability who their siblings have said things to me. They've told me that Noah is my favorite. They have said he gets away with things that they wouldn't get away with. So all of those kinds of things and no matter how many times I tried to explain to them that it's not about favorites, each of them requires something different from me and so therefore, I have to provide different. It's not that Noah gets away with things, but it is that he has to experience and see things maybe in a different way so that he can understand why, or why not, he can or cannot do whatever he's doing. And so I could tell you that these are really really typical feelings that so many siblings are experiencing, that so many siblings are experiencing. For example, I have a friend they are pastors at my local church and the wife grew up with a brother with cerebral palsy and she would say she would tell you know about times where they'd be out at a restaurant and you know people would look or they would say things and she would want to defend and it would make her really mad that they would act a certain way because of that and then, at the same time, she had so much jealousy and anger towards him because of the attention that he received from her parents as opposed to what she received.
Speaker 1:So there are just so many different mixed emotions that come through and feel, and one of the things that we have done previously in our respite nights we invite the siblings to come as well. We give them a separate grouping together. Typically it depends on our numbers and how we can do that, but when we have bigger sibling numbers, we give them their own group. They have their own devotional time and kind of talk time where they can share. And I think one of the most important things that we can help them to know is that their feelings are real, they are not singular and it's what we do with those feelings that matters.
Speaker 1:And it's very much similar to the isolation that parents of individuals with disabilities feel. When it comes to isolation and feeling like other people just don't get it and so they don't really talk about it and that kind of thing. And I think that siblings fall into that as well. Right, they're feeling like other people don't understand, or maybe they're embarrassed of their feelings that they're having understand or maybe they're embarrassed of their feelings that they're having. But being able to validate the fact that they have those feelings and letting them know that those are very typical feelings that other people feel as well, that they're not alone in it and that it is good to share and especially speak to their you know, share with their parents where they're at and how they're feeling.
Speaker 1:And I think every sibling relationship has those feelings of I love you, I can't stand you right now, I want something that you have, you know all of those kinds of things. And it's just looking at, what do I do with that? How do I work around it? How do I, you know, move past those feelings and we as the church can give those siblings a safe place, we can give them a listening ear and we can make sure that they feel special and valued and wanted, just as much as we are intentional about doing that with their sibling with a disability. And I think that is so very, very, very important that we do that within the church and that we don't just look past that sibling and only recognize their sibling with a disability.
Speaker 1:And I think of that in the situation of like a mom when she first has a baby right and people are beelining for the baby and they just want to talk to the baby and they want to see the baby and they want to experience that kind of thing. And we can tend to do that with people with disabilities because we speak so often in disability ministry about being intentional and welcoming and valuing and making sure that they're not left out and having you know the whole movement of inclusion and making sure that's happening within our churches and our events and our daily worship settings and those kinds of things that we tend to leave out the rest of their people. And so we that sounds crazy because we spend so much time saying be intentional, be intentional, be intentional, make sure that you include, don't leave out all of those kinds of things. But in the same vein we want to say make sure that you see the rest of their family. Because of that intentionality and created programs and purposeful inclusion, we somewhat make their family and their siblings invisible. So we want to bring them back into the visibility.
Speaker 1:We want to make sure that we are including them. We want to again hear them, give them a safe space, make sure that we can validate feelings and help them to know what to do with them. And sometimes really the most important piece of that is the listening ear, someone to hear someone, to know someone to say I get that, I see what you're going through. I understand that that is so hard, all of those kinds of things. A lot of times. They don't always want you to make the decisions or direct them in knowing exactly what to do, but they do want to be heard and that is really, really important. So we can talk about this relationship in just negative terms, but that's absolutely not where we want to just land. We want to make sure that we are building on a firm foundation, making sure that the sibling is heard and loved and welcomed and all of those kinds of things because of the difficulty in the relationship. But we also want to help them to see the positive things.
Speaker 1:In this book of the Sibling Survival Guide, it shares that the majority of siblings would say that this relationship is difficult, but they would also say that they have learned patience and love and compassion that they would never have experienced in other situations. So there are negatives, there are difficulties, there are feelings of isolation and guilt, embarrassment, jealousy, all of those kinds of things. And again, we're going to hear them, we're going to validate those feelings, we're going to talk about what they can do with them and even be able to open some conversation with the parents about this, because maybe the child has kept that to themselves this whole time. But we also want to highlight that there are positives in this relationship. There is growing, there is experience that will benefit these siblings later on in their lives and they want to know that, or they need to know that. There are two sides to every relationship, right, there are the negatives and there are the positives, and every healthy relationship is going to have both, and we only become more healthy as we see that and validate it and learn from it and move on.
Speaker 1:And so here is why this becomes so very important. First of all, to have a positive relationship built on a firm foundation that is moving in a good direction, takes away the isolation from the whole family, right? Right, because the more that the family is is separated based on those negative feelings, the more difficult it becomes for everyone, because then everyone feels like they're living their own path, their own struggle, and listen I don't want to say that the sibling should carry the responsibility of their sibling with a disability. That's heavy and we don't want to put that on there. But oftentimes, because of the natural progression of the relationship and the fact that they know their siblings so well they end up becoming an advocate. And we don't want them to carry with that a bitter feeling or a you know a struggle their whole life, where they kind of look down or are, you know, weighed down by that relationship. And so we want to look at the positive things and we want to foster ways for them to engage in one another.
Speaker 1:And, for example, we have twin brothers that attend. We also have twins, brother and a sister, and in both aspects one is diagnosed with autism and one is not. And when they were brought to us a lot of times actually in both cases their parents kind of explained how their sibling can help the child with autism out. And we are very intentional about assigning buddies and making sure that the weight of all of that is not on their sibling. So we as the church can take off some of that. There was another time, at one of our respite nights, we had a sibling group come and we were trying to grab some information from mom and dad and see what buddy they might work with best, and the parent described the child as their. It was their sibling with a disability. It was their support, human, emotional support, human, and I love that siblings can be that caring and loving and have compassion and provide for one another, but I also want to be sure that they are not carrying the full weight of that. So we are intentional about providing support through a buddy system, through extra volunteers, through being aware of the spaces and the activities that are provided for those individuals to make sure that everyone has the most positive experience possible.
Speaker 1:We want to make sure that we create an atmosphere that is beneficial to everyone. So why do we do that? Because the gospel isn't just needed to be accessible for people with disabilities, but we want to make sure that the gospel is accessible to their siblings, to their family, and that we don't unintentionally place all the focus in one place and not minister to the whole family. We want to make the gospel accessible to everyone. Do I know everything about disability ministry? Do I have all the answers? Have I done everything perfectly? I have absolutely not, but we are going to continue this conversation so that people of all abilities can have the opportunity to know Christ, grow in Him and serve Him with the gifts that he has given them. For deeper dives into these topics and more, check out indispensablepeoplecom and visit Amazon to purchase the books. The Indispensable Kid and Gospel Accessibility and the Indispensable People and gospel accessibility and the indispensable people.
