If you have a child with a disability and a child without a
disability then you likely think about two things:
1. How to make sure that your child without a disability
doesn’t miss out or get overwhelmed because of all the “stuff” that goes along
with family life with disability.
2. How to best raise your kids so that your child without a
disability is supportive of your child with a disability when they are adults
(and after you are dead – let’s be honest, it’s a worry).
Erica Baker-Tinsley explored the factors that influenced
siblings to be in supportive roles as adults and what helped them to be
successful in their supportive roles.
Not surprisingly, Erica found that sibling relationships were not perfect even in the best of circumstances. ?
Let me give you one sneak peek right
Growing up together, spending time
together and sharing their lives together – even the hard stuff, was really
Nobody thought that being separated
in a different school was helpful.
Nobody thought that being protected
from the “burden” of helping care for their sibling was helpful.
Nobody thought that being kept in
the dark was helpful.
After you listen to the interview
leave a comment below and tell me if any of the research findings will prompt
you to change in any way.
Genia: Welcome to the Good Things in Life Podcast. I'm your host Genia Stephen. Welcome back. Today on the podcast I'm speaking with Erica Baker-Tinsley. Erica is a professor and the program coordinator of the Developmental Services Worker Program at Loyalist College in Belleville, Ontario where she teaches future human service workers. Before becoming a teacher, she worked as a family support coordinator for a nonprofit organization in my community that supports people with intellectual disabilities and their families.
Genia: Erica and I met before, um, her involvement in my community, um, because she's been involved in studying, implementing and teaching social role valorization for 24 years and Eric and I met at some of those training events as, as she'll point out. Erica is the coordinator of the Ontario SRV Study Group, a board director of the Southern Ontario Training Group, which offers social role valorization and other related training opportunities at Ontario, Canada. And she's a member of the North American SRV Development, Training and Safeguarding Council.
Genia: If you're interested in more information on social role valorization, a great place to start is an article that you can find at goodthingsinlife.org/srv. Now, Erica has a Bachelor of Arts degree in Disability Studies from Ryerson University and a Master of Arts degree in Community Development from the University of Victoria. And it's her master's thesis research that we're talking about today. Erica did her master's thesis research on sibling relationships specifically, what kinds of things are likely to lead brothers and sisters of people with intellectual disabilities to want to play a supportive role in their brother or sister's life, um, throughout their life. And then also what kinds of things are helpful to them in their role as a supportive family member.
Genia: Erica Baker-Tinsley, thank you so much for joining me today on the Good Things in Life Podcast. We have known each other, I was trying to figure this out. I actually couldn't figure it out. We've known each other for a very long time.
Genia: Yeah. Decades. We first met when you were working as a family support coordinator at BDACI. And my family was, um, receiving services from BDACI, which is the Brockville and District Association for Community Involvement. Um, but I can't remember when we actually first met because it was definitely before you were involved with my family directly. Do you remember?
Erica: I don't remember the year, but it would have been at various trainings that we ended up both being at. Um, so it would have been my guesses at least five years before. I would've met you through BDACI or had that [inaudible]
Genia: Right. Right.
Erica: But I don't remember the exact year, but it's been a long time.
Genia: Yeah. Yeah, it has been. Well, um, thank you for, for joining me today. I'm, I'm really grateful. And, um, I know that this is unusual, um, for you, this is not the place that you are, the kind of public speaking that you typically do. So I appreciate you, um, stretching your comfort zone for me. I wonder if you could start by giving people a little bit of background on you, your relationship with people with disabilities and their families.
Erica: Sure. So right now my work role is I'm a professor at Loyalist College in the Developmental Services Worker program and I've been here for about 10 years. So my role here is, is to train people who eventually will work, um, in the field of developmental services or in school system working with, with children or adults with intellectual disabilities. Um, I'm also the coordinator of the program here. So I do various administrative kinds of things on top of my teaching. But before that I worked for 15 years, uh, with the Brockville and District Association for Community Involvement, where it was where, where I had contact with your family. And through that work, I worked pretty closely with, uh, with a number of families for many years.
Erica: And did all kinds of things, including helping, you know, coordinate services and doing advocacy in the schools and helping families think about, uh, roles that their children could have, thinking about future planning. So it was a pretty complex role. Um, and so I got to work pretty closely with families during that time, which is sort of still a passion of mine. I, I still have lots of contact with families that I supported and personal connections with people with disabilities that go outside of my work. And then just through the other kinds of training that I do, social valorization training and, and other kinds of training, I have contact with families in those contexts as well.
Genia: Right. And you, several years ago now, completed your Master's degree, um, in Community, Community Development. Is that the right?
Genia: Do I have the fields correct?
Genia: Okay. Community development and your master's thesis was on the topping, topic of, the topping, excuse me, topic of sibling relationships. Um, and that's what I had invited you to talk about today. And I wonder if you could give us just a bit of context and background to that topic of, of siblings.
Erica: Sure. So through that program at University of Victoria, one of the things you need to do in your graduate work is to partner with an organization and conduct research that the organization benefits from or wants and in some way. So it's not just a topic that the student gets to pick. Uh, but I lucked out here really because it was a topic that I was really passionate about and that met the needs of an organization. So I paired with BDACI and, and conducted research that had to do, at the beginning, we weren't sure how it would it would play out, but the idea was that we know the, that siblings have an important role period.
Erica: But also, you know, as parents age and, and siblings have a role in supporting their brother or sister when the, when the family, you know, the parents are no longer around perhaps. And so we thought about that topic and, and wanted to look at a couple of things. So our goal was to figure out what are the factors that influence siblings to take on these kinds of supportive roles. Um, and, and also how would we build the capacity of siblings so that they're better prepared to take on those roles. And we used the term supportive role intentionally. A lot of the literature talks about care giving. And that wasn't really exactly what we were thinking about.
Erica: We wanted to think about a supportive role in a much broader way because that can be all kinds of things including, you know, around decision making kinds of issues, advocacy, ensuring this, the person's health and well-being, have some kind of role in planning. So we looked at it as a broader role versus just providing direct care. So that was sort of the, the main idea. And then the objective was that through the research, I'd be able to provide BDACI with some recommendations that they might be able to use in their planning processes around leadership development, membership engagement, and some of their training. That's sort of the backstory of what we were looking at doing.
Genia: So I imagine, I mean, I can, I, can I, I understand why that is an important topic, but was there something happening in the community specifically that was bringing that to the forefront?
Erica: I think, so there, I can answer that on a couple of levels. So in terms of, of BDACI's connection, it's a topic that BDACI thinks a lot about, about helping families think about the future. And through, um, my work with families and then also at the time I was partnered with Beth French and, and our conversations were that we were seeing parents aging, which is a broader issue, not just with BDACI, um, and that siblings were starting to move into these roles. And we both had connections with families where, um, there was a clear commitment on the siblings part and on the parents part, but maybe not the practicalities about how are we actually gonna do this.
Erica: So there was some, some issues with, not really issues, but some discussions around how do we help BDACI families think about this. So that's one piece. But then I just on a broader level, we do have, um, it's, we're coming with the first generation of parents who, who didn't institutionalize their children and, and that, uh, that group of parents are getting older and, uh, it's the first generation of, of siblings being raised together. Um, and so this is just a practical issue in terms of our history that we now have, uh, parents who are, who are passing on or who are getting older and have to think about who's going to take care of their son or daughter, look out for them when they're not, not here. So we have a bit of a timing thing on a broader level.
Genia: Was there any discu – I truly don't know the answer to this question. Um, and I'm curious, was there, when you were doing the background research for your research, was there any examination of the types of supports, uh, that were, that exist for siblings and an analysis of sort of what the, the values foundation is within those existing programs?
Erica: So, uh, part of my research, there was a literature review, obviously, and, um, so I don't know that I focused specifically on what you're talking about, but we looked at in terms of their literature review two things, what are, what's the literature say about factors that influence siblings? And they tended to be much more practical kinds of things, um, demographic type details, so family status and location and gender, that kind of stuff. So there was a lot of information about, about who was more likely to, to provide support to their brother or sister. And then, and then the other piece that we, that was evidence in the literature had to do with the needs of siblings and what did, what the literature say about that.
Erica: Um, there was some overlap with what the families that I spoke with, uh, talked about. But there are, the literature was a, was a lot more, I don't know, I would say, I don't know if it's clinical or just more practical about, you know, siblings need connections with each other. And there was a lot of discussion around like sib workshops, those kinds of things. Very practical, uh, training kinds of opportunities. So I didn't, you didn't see a lot of the, some of my findings, the families that I spoke to, there was more of this values piece attached to it, which the literature didn't, didn't reference.
Erica: It was what I will say about the literature. It was also, um, it was quite, uh, a search to find a literature that was related to this topic, which I think is an important piece is that there, there hasn't been a lot of work in this area. There has been some but not a lot. Um, and the other thing that was difficult to do was to find anything related to siblings that didn't talk about the negative impact on the sibling that had, that doesn't have a disability, which was not at all what my research was about. But, but that's what the predominant, you know, literature talks about.
Genia: Yeah. It is really interesting and it's, you know, so, you know, and many people listening will know, but maybe not everybody that, um, my younger sister who's three years younger than I am, has an intellectual disability. And so long before I was a parent, I was thinking about these issues, um, uh, thinking about these issues as a sibling, which is how we met, why we would've met, you know, five years before my family would have been involved with BDACI because, um, of my son.
Genia: And what I've experienced over the, um, over my lifetime is that there's an awful lot of what, um, a mutual friend of ours, um, Vicki Clark and I used to joke about this 12-step programs for siblings. Like, you know, this sort of like, you know, there's, there's a problem here and there's a lot of like, um, pity and where-was-me kinds of stuff that we never really, um, found resonated with us. Um, so it doesn't surprise me that the sort of, um, burden and harm narrative was pro, was existed in the small amount of literature that is available.
Genia: It's a, it seems to be that it perhaps there is a connection with, um, the um, literature on, uh, chronic sorrow for parents and this sort of like that, that, you know, I'm sure some people experience it that way, but also where, um, research and medicine has kind of created also the concept and propagated the concept in the first place and then told people what to expect. Um, okay. So tell me about, tell me about your research and what you fou- Well, tell me about how you conducted your research. Like what did that look like?
Erica: So I did, I did it in two different ways. So part of it was done through interviews with um, brothers and sisters who had already taken on some or all aspects of the supportive role as, as I defined it earlier. So people who are already in those roles to various degrees had already made a commitment to be in those roles. And um, you know, like I said, with various degrees to some, quite new in the role and then other people who had been providing those kinds of supports for years for their brother or sister.
Erica: So there those were, or, um, semi-structured interviews. And then I also did a focus group with, with younger, um, and or newer, uh, siblings who had not taken on a supportive role yet, but knew that they wanted to, had been committed to. When I said younger, just ended up being, uh, agewise that these were people in their late teens or early twenties who, who hadn't really taken on any, uh, major aspects yet but knew they wanted to and were committed to.
Erica: So it was to get the perspective of, of people who were, were committed. So that is important to note. So I, my research didn't involve talking to family members who had decided not to be in supportive roles. That, that's research somebody else can do, but that wasn't mine. Um, yeah. So I, through interviews and focus group gathered information about, uh, ultimately those two things. What, what are the things that influenced that decision about wanting to be in those roles long term? And then, and then what kinds of, of ways could we build capacity for siblings so that they're able to do it?
Genia: So, let's, so, so let's talk about those two, two, um, questions separately. So what did you find related to why people made those decisions? So [inaudible] it in a supportive role.
Erica: So they're, basically, the, my findings, I ended up organizing into four different categories and some of them relate to the first question so I'm really [inaudible]
Erica: the last question. So, so one, uh, one big piece that had to do with, uh, why people had made that decision, had to do with the relationships that the people I talked to had with their brother and sister, brother or sister. And what was clear, um, from both groups of people was that they had very strong, loving, deep, ongoing relationships. They were committed to their brother and sister. They had been raised together. Uh, they had been involved from the beginning and that they, part of the influencing factor was that they loved their sibling and they wanted to be there. Right. So that was one pretty consistent piece.
Erica: Um, in terms of other influential factors, they, both groups again maybe in different ways, but talked about how they had been raised in an environment where it was more about the family than the disability. That, that even though there might be lots to focus on the kinds of supports that their brother or sister needed, that there was a family philosophy for lack of better words about, um, that this is about taking care of our family members and not just taking care of my family member was a disability. So sort of a family mindset almost. There was lots of discussion around having been exposed to really powerful ideas or amazing people throughout the years.
Erica: So lots of the people I spoke to had, their parents had been involved in, in, um, various parts of disability movement or dissocialization or advocacy in some way, changing the education system. So there, there was lots of contact with, with organizations doing change agents kind of work. Uh, lots of people had been to, uh, lectures or conferences or workshops on all kinds of things that, that gave them a different idea about maybe the life that their brother or sister could have. So that was a pretty consistent message.
Genia: Can I ask, can I ask a question about that?
Erica: Sure. Yes.
Genia: Um, I'm not even sure if I have my question really fully formed in my mind, but it seems to me that, um, that that particular aspect of having been exposed to ideas, people and um, events or opportunities that, um, are related in some capacity to advocacy efforts, that that would be both community-specific. Like that, the fact that those siblings had those opportunities, whether it was people, ideas or events, not every community would necessarily be fostering those kinds of opportunities.
Erica: That's true. Yeah. Um, I'm should, I should, just to clarify, I should say that the people that I spoke to were from various parts of Ontario and New Brunswick. So it wasn't just [inaudible].
Erica: My organization connection was Brockville, but the interviews, the people connected to the project were from various parts. So I think you're right that there probably is more in certain areas. Um, but, but it was a pretty consistent message. The kind of thing they were referring to might be different. It might be different kinds of speakers or ideas, but, uh, the general idea of being connected to change was [inaudible]
Genia: Right. And then my second thought around that is that with all of the examples of the types of, um, opportunities that siblings had, all the, the types that you listed were all about, um, change or, um, you know, social justice issues or, um. Like none of the things that you said were like siblings had the opportunity to learn about Down syndrome.
Erica: Right. Yeah. That, that wasn't what they were talking about.
Genia: Yeah. That, I think that's really interesting. Yeah.
Erica: Yeah. It had, it really had to do with, and then there was all kinds of examples listed, but, um, a number of people referred to just training the had-to-do, uh, they called it values training, which can be any number of things. But you're right, it wasn't the, you know, all of the clinical elements around a particular disability.
Genia: Right. Which is also interests me sort of outside of the sibling experience, um, or the family experience. But it's so popular, it has been for many years to um, you know, to try and facilitate, um, you know, acceptance and belonging for children with disabilities by educating the children around them about their disability.
Erica: Now, there were, so, absolutely. There were pieces around practical kinds of information that, um, children might've been exposed to growing up because they were helping out there, you know, brothers, sisters do something. So there might be pieces of it, but yeah, that wasn't the main idea.
Genia: Interesting. So that was number three. You had said that you've, um, responses fell into four categories and I interrupted you after number three.
Erica: Well, so, so actually I'll backtrack a little bit just to clarify that. So there were four major categories and then three of them really had to do with, with the first question around influential factors and then that the fourth had to do with the capacity-building stuff. So the three that were relating to the idea of, of influential factors, one had to do with this relationship, um, that, that they had built. The second category was actually called influential factors. And I was just running through some of those. So one was the, it's more about family than disability.
Erica: Um, the connection to these ideas and these people, you know, these amazing speakers or different influential people. Another one had to do with the idea that, um, it isn't a burden to look after your and take care of and think about your sibling. Um, that it's a privilege. And so when I'm, some of the phrases that I'm using, like “It's not a burden. It's a privilege”, “It should be a privilege story”, was, those are actual quotes that siblings had said. And those, I use those as the titles of the themes for my research. But that was very powerful that this idea that it is a burden to take care of your loved one just isn't factual.
Erica: That doesn't mean that there aren't difficult times and that there isn't work involved in that. So there's, we're not saying that, but that, um, there is a mindset that this is not a burden that I, that this is something that's important and it's the way our family is and that it's a privilege. And then also in that influential factor there, there was, there was discussions about some of the things that do make it more difficult. So there were, you know, some practical things and [inaudible] that siblings talked about that would make it harder.
Erica: Um, it might be a lack of knowledge, just not understanding the system because you know, maybe the parents have been doing most of the practical kinds of things. There might be money kinds of issues that come up there, difficulties with balancing responsibilities if the siblings had their own, you know, children or their own spouses and had to, having to balance all of that. So there was some of those, those practical things that came out. And then the third area that, that addresses the issue of the influential factors had to do with, with planning.
Erica: And I don't necessarily mean formal planning, but how, what did the siblings have to say about their experience or their understanding of planning? And some of the things that came out was that siblings had always been part of that conversation even, even early. So they were just always part of thinking about what was going to happen in the future and at least if not involved in a formal process, at least involved in that conversation. There, now, those conversations, I will say for most people were quite informal. They, they did not have a plan, so to speak on paper that they were implementing. Um, that it was more of an informal, indirect, largely based on assumptions and intentions.
Erica: The, the parents, um, knew that the siblings were going to help out in the siblings knew that. And it was a, one person called it as sort of an unspoken arrangement, um, but that they had always been involved in those kinds of conversations. And the other thing that was interesting was that even when it wasn't formal written down, um, the siblings were really quite clear about what those responsibilities entailed. You know, so that they knew they were going to be pieces about, you know, managing finances and being, having some role in coordinating services and, um, that there might be either roles in providing direct support, organizing direct support. So people were pretty clear about what it meant even though it had never really been officially or formally defined.
Erica: Yeah. So those were, those sort of the three areas that spoke to the factors that influenced the siblings that I talked to about why they were committed and why they were, were going to be in these supportive roles in the future.
Genia: And so how then, I mean there's some indication just in, in that, but, um, what did you find as far as what siblings said would be helpful or necessary in order for them to be successful in supporting their sister or brother?
Erica: So the, one of things that came up was, um, and, and we phrased it purposeful coming together. So this idea that siblings do want to connect with each other, they do want to have access to each other. They do want to learn from each other. Uh, but, but what was really clear, which speaks to what we talked about earlier, was that they didn't want it to be in a support group kind of way. Not that they're, you know, there might be some benefits to that and at certain periods of time, but it wasn't, it wasn't in that negative support group kind of way, but that people wanted opportunities to come together to, to learn practical things, but again, together, not, not necessarily just generally.
Erica: Um, and to be able to learn from other people and how they're doing it and how they're dealing with some of those issues. Um, another thing that was, uh, clear around building capacity was that you can't do it alone and that, um, even if it is a sibling who is taking on a primary role that you, that, that you can't be the only person doing that, um, that other family members and brother, uh, family members you need to be or can be involved connecting to, uh, what was described as like-minded people or people who had connections to disability issues or disability movement in some way.
Erica: Um, and, and, and like I said, other connections with siblings but not in maybe that, uh, support group or sibshop kind of way. Um, and, and paid people. That, paid people have a role too in helping. So, so to build capacity there are all of these other people that also need to be involved in some way. Um, another idea was around building capacity was that it would be much more helpful if there was a slow transition of responsibilities from parents to siblings. That, it isn't helpful when this is done in a crisis, you know, something happens to a parent and, and we're all trying to figure it out last minute.
Erica: Um, and that that would be easier, uh, for everybody involved, easier for the parents, easier for the siblings, but also for the person supported that, you know, it's pretty difficult when that just happens overnight. And then the last, the last sort of idea around building capacity was more open and honest communication. So I talked about how, how it seemed to be a little more around underlying assumptions and unspoken agreements that the idea was it would be better to have more direct conversations where the expectations were really clear and the intentions were laid out. And again, not necessarily saying it has to be super formalized but at least more above board conversations instead of relying on the assumptions that everybody knows what's going to happen.
Genia: Right. So these conversations were with, uh, siblings who were at the youngest, it sounds like, um, in their teens, like people that are either approaching adulthood or already adults who are, um, who are actively involved in supporting their brothers and sisters with disabilities. Was there, I know this was not the topic of your research per se, but I wonder what reflections, um, you have on, on what younger parents or parents of younger kids might incorporate into the way they are parenting or kind of running their family or any advice for parents of younger kids in order to, um, you know, maximize the, the benefit to all of their children.
Erica: So what we want to do when the research was ultimately took what we learned from the, I say, I keep saying we because I really, this really was a partnership with, with BDACI. So, um, just to clarify why I keep saying we, but even though I was doing the, the actual, you know, work of writing it. But when we looked at what we learned from the literature, um, either because it was there or wasn't there, uh, and then also with what, what the siblings had to say, there were a few things that really leaped out as a discussion points or things that we could think about for families. And one, um, was about the importance of fostering those sibling relationships. So if we go back to a lot of what I talked about, those are outcomes of being really close to your brother or sister.
Erica: Um, so encouraging just typical sibling relationships with lots of contact, uh, siblings talked about having an active role in caring and supporting for their brother and sister. And, and I know from my own experience with families and um, you probably have seen this too, Genia, that sometimes the parents were very good reasons, want to try and shield their other sons and daughters from any of the support or care because they don't want to burden them or it's not their responsibility. And that really was the opposite of what we were hearing. That the earlier people are connected, the more active role they have, that means they understand their brother or sister better.
Erica: They see that they're all part of, you know, everybody has a mutual responsibility here. So cultivating that family culture that encourages shared responsibility and just making sure your kids are together. Um, some of the, the siblings I spoke about, their brothers or sister had been institutionalized at some point and they talked about how harmful that was, that separation. So I think that's an important lesson just to foster just typical relationships between brothers and sisters and it's okay that they're involved and it's okay that they, that they, you know, understand what's going on and that it's not a burden to actually involve them in those kinds of support. Either practical supports or just the awareness of what's going on?
Genia: So, sorry. I, I'm just the, it seems like an obvious segue to have you briefly talk about the role of sibling. Like when you say typical relationships, you know, where it's sort of a nice segue into, um, thinking about social role valorization and what SRV, which social role valorization or SRV for people who are listening is way outside the scope of this conversation, but, um, is a social science theory that's very, um, relevant. And um, if you go to a goodthingsinlife.org/srv that will take you to, um, a fantastic summary article, um, if you're interested.
Genia: But social role valorization talks about valued social roles and helps us to understand about how our roles, our social roles function to give us access to the good things in life. And one of one of our family roles is the role of sister or brother. And so I'm just wondering if we could like just really briefly talk about or think about what does the role of sister or brother actually look like in a, in a kind of typical scenario. So when parents are thinking about, you know, how to make sure that they're, they're supporting their sons and daughters to have relationships with each other, what does that relationship actually look like typically?
Erica: So the, um, there were lots of pieces that siblings spoke to that helped define at least what they were thinking about as typical sibling relationships. So I, some of what I'll say is, is directly from them. It's not just me sort of thinking about that, but then also there are lots of connections we can make with the, the, this research and then also various parts of, of social role valorization, um, and specifically around the culture valued analog. So if that's something that people have some background with, but thinking about what does typical and valued relationships, what does that look like? So those, there's lots of overlap here. I just wanted to point out, even though it's not SRV related the research, you, you can certainly make some connections.
Genia: Yeah, absolutely. Yeah.
Erica: And what, what I heard, what people were telling me when they were describing, you know, just typical relationships was, uh, just wine is being raised together. So, so trying to prevent whenever possible, those kinds of separations, including school or you know, the kids going to the same school and, and being involved, having regular contact and that regular contact was maintained even when, when siblings got older. So this isn't just about, um, you know, young, young siblings. But that there was, uh, just typical interactions doing the things that siblings do.
Erica: So students, so some of the, the siblings talked about just going on trips together and, and being in, you know, Cub Scouts together and going on family vacations too. Um, like summer vacation, but also going to, you know, grandma's house for, for Thanksgiving dinner. Those kinds of very typical things. Um, having their brother or sister at, at their graduation, all the kinds of things that you would think are just average and day-to-day things that a sibling might do were highlighted as, that these things helped build this relationship because we were always together, we were playing outside together, we were, you know, getting in trouble together.
Erica: We were fighting, we were doing all of the things that, that are typical are just, we think about as typical relationships and that those things being fostered and encouraged versus encouraging separation is one of those factors that built those relationship where siblings were saying that, “Yeah, this is my brother or sister and we're, I'm in this for the long haul because we were raised together and we do everything together”. But I want to be clear that doesn't mean that it is, it's just perfect all the time cause that's also not how siblings work.
Genia: Yeah. For sure.
Erica: Any sibling work, yep.
Genia: Yep. Having several myself, I can attest to the imperfection of sibling relationships.
Erica: Yeah. And that was, that was clear that, you know, one person talking about how, uh, you know, they, she had to share her dessert cause that's what, that's what her parents wanted her to do. So it's all those little things that, that irritate you about your siblings.
Erica: Just the good, warm, fuzzy stuff.
Genia: Yeah. Um, yeah. And we like, these are the kinds of things that, um. Oh, this is so, such a digression. But like, when I think about my, my relationships with my siblings, most of the things that stick out most clearly in my mind about our relationship are, um, are really like those things like disagreements. One of my sisters used to sit on me and make me punch myself in my face with my own fists. And you know, the, those, you know, the time that my other sister dumbed milk on my head.
Genia: And you know, my younger sister Kate used to sit with her toes just over the threshold of my bedroom. You know, when I would tell her to get out, you know, and she'd be like, “I'm not in your room. I'm not in your room”. These little kinds of like daily interactions, those are all negative and I have lots and lots of positive memories of my sisters as well. But these are the kinds of like little, regular ongoing interactions that kind of weave lives together.
Erica: Yep. Yeah, absolutely. And that those, um, those good relationships have the good parts and the bad parts and that, uh, you kinda can't have one without the other.
Erica: And if we're talking about fostering relationships, it's, it's as they typically roll out and which is different than, um, and I've, and I've supported families over the years that for all kinds of reasons, uh, really try and shield the, the child that doesn't have the disability from any involvement or any part of their other siblings care. Um, and again, for all kinds of good reasons, but that it might in the end have the opposite effect of what was intended, right. Because it does create separation and it does create this idea that care of him is a burden and that I shouldn't have to do that. And um, so.
Genia: Right. Yeah. Okay. Sorry. So I, I kind of derailed where you were going by asking you to talk a little bit about, um, the role of sibling.
Erica: But that, I mean, so I think it was a good deviation because it was, that was a really big piece of this is, um, if we would go back to what some of the findings that I talked about, have people been separated, have they not spent time together, have they not been involved in typical interactions, I suspect highly that their, their viewpoints would have been very different than their mindsets. Would have been different. All right. So that's an important piece is what, what can we do to foster just typical sibling relationships? Um, another, another piece was around just better future planning, excuse me, and how can we enhance that in a, in processes that make a lot of sense for families to do and to be involved in.
Erica: Um, because siblings did talk about both, both the siblings I spoke to, but also the research talked about it is important to be creating some plans for the future that's concrete that people know what's going on. Um, that those planning process can actively engage siblings and they don't necessarily always do that, but siblings could have a really active role in that. Um, and that families can find processes that work. But ultimately, as long as there's concrete conversations happening about what that, what a plan could look like, not just the creation of a, but also the implementation.
Erica: So having siblings actively involved in, in whatever process the family's using. And because of the point of this research around providing information to organizations, BDACI specifically, that's something that service organizations could do quite easily. All service organizations are involved in some kind of planning, you know, of some kind. But how actively are siblings engaged in those process? So, so that was something that, that came out both in my research but then also the literature. Um, and then,
Genia: Is that, sorry, can I ask you a question, Erica?
Erica: Yes, sure. Yes.
Genia: That can't really be though about having, um, like a planned document or a strict, like this will be exactly what happens. That really has to be more about not having, um, sort of like secrets and assumptions that nobody talks about so that everybody is feeling lost. And unsure when something happens. Is that, is that right?
Erica: Yes. And now again, it'll depend on um, the family because there are some families that would have a, you know, a much more formal kind of process. But, but it was more about having really clear conversations. Everybody is, is on the same page about what would happen. Um, it doesn't necessarily have to be some formal, you know, ministry mandated kind of document. However there are, so it doesn't have to be that kind of a document. But what was clear was that there does need to be some, some formalization around certain things around sort of finances, for example.
Erica: And how's finances, finances being managed. And there might be some more practical things that have to do more formalized. But it was, it was about let's start these conversations early about what the future looks like. Those are, obviously this will change as time goes on, but it should be a lot more clear. Um, and, and formalize, I suppose the family wants it to be, but, but not about, let's just assume everybody knows what's going to happen
Genia: Right. Okay. Okay.
Erica: in 30 years. Yup.
Erica: But yeah, I guess what's more intentional is the difference. Less, less about the formalization process but more of an intentional process.
Genia: Right. Got it. Okay, thanks.
Erica: And then the last sort of broad area when you pull everything together was about what can be done to meet some of the very specific needs that siblings might have if they are in supportive roles. And one thing that was quite interesting to me, just having a background with a family sport organization was to make sure that organizations that, that call themselves family support organizations or that do that kind of work, that family actually means family, not just parents.
Erica: And that both literature and some of the people that I talked about mentioned specifically that um, family almost always refers to parents and that if organizations adopted a broader understanding of family that that meant all family members, that that would be helpful because then they'd be more intentional about the kinds of things they, they offered regardless of its training or supports that we're not just talking about support to parents. I just found that interesting because, um, I can see how that plays out. We use the term family, but really we mean parents.
Genia: And so we mostly mean moms.
Erica: Right. True.
Erica: Yeah. So, uh, another thing had to do with, with the kinds of training and being, um, intentional about providing training and promoting training to siblings. So again, that kind of feeds back to the first, the first point around, if we're talking about training, we tend to talk about training for parents. And this could be training on anything. It doesn't, this, this point isn't about a specific kind of training, but that make sure we're including siblings in those kinds of training things. So when we're talking about training around some kind of, um, you know, ministry requirement or something that are on funding or, um, you know, administering funding for example, but that making sure there's intentional invitations to involve siblings and that kind of, any kind of training.
Erica: Um, and then there was, there's just all kinds of practical things that a sibling might need access to and so siblings talked about, uh, you know, respite care or other kinds of things, paid services. And that the needs that a brother or sister might have, uh, in their support to their, um, you know, impaired siblings might very well be different than the needs that a parent would have. And that just there, that acknowledgement that the needs might not be the same. So service organization specifically would have to think differently or may have to think differently. I guess depending on the kinds of supports they offered and be open that those supports might need to be different than what a parent might have wanted.
Genia: Right. It's really kind of underlines the problem of, um, meaning parent when you say family. Cause then you start thinking it's all the same thing.
Erica: And, and so some people talked about, you know, if, if having a support, uh, have you had paid support? And then if, you know, the, something happens that one of the parents doesn't go to work and then they're, you know, they stay home with, uh, their son or daughter. Um, and that some of the siblings are saying, but that's not gonna work for us. Like we have to go to work. And that's the expectation that if supports fall apart, the parent just will fill in. Um, I might even say that that's a good approach, but that, that typical approach just isn't gonna be the same if, if the other, their sibling goes to work and they're supposed goes to work.
Erica: So it's just really maybe rethinking the kinds of support that is offered. Uh, and then also just continuing to promote those connections to disability organizations or advocacy organizations given how often that came up as something sibling said was helpful, that either their parents had connections to the disability movement or disability organizations or some kind of advocacy work. And that that was a capacity building strategy for parents. So it makes a lot of sense that that would also be a capacity building strategy for siblings and, and some siblings are connected to organizations but not, not necessarily tends just to be the parents again. So it's sort of a missed opportunity almost.
Genia: Right. Okay. So if you had to boil this down for parents of younger children, it would be, um, it would, I'm, I'm sorry, I'm just trying to percolate that.
Genia: I think it kind of boils down to don't, don't really, um, like don't really separate out time together or conversations.
Erica: Yeah. So, I mean, they're
Genia: They're tying everybody in.
Erica: That, that relationship at the end of the day is what's going to make the difference, um, so I'm beyond summarizing quite broadly here. But you know, when, when people are grow up in the, all of the imperfections that come along with being part of a family and when people are raised that, you know, we're all in this together and we're all, we are all responsible for each other. Um, which just as a bit of a side note would not necessarily be a cultural value that we have broadly, so,
Erica: Right? That may not be a typical family value that some families might have. But that when siblings are raised together and they are actively involved in each other's lives and that there's a, there's a lot of intention around not fostering this burden mindset, um, that, that relationship ultimately is what's going to make people or at least influence that commitment. The other pieces that I mentioned around, uh, planning and those kinds of conversations in the training, those are, those were key parts of the research, but really if you don't have those relationships in the first place, the other two almost become a moot point.
Genia: Right, right. Yeah. Interesting. It also, it also then speaks to a parent's own mindset around, um, you know, burden mentality.
Genia: All right. Erica, this has been incredibly valuable. Is there anything that we've missed?
Erica: Um, I don't think so. I think that's the general overview. Um, obviously if it's topic people are interested in, they, you know, I'm happy to share my paper. Um, I've also done some analysis of the research from an SRV perspective just from my background, which we only touched on. So, you know, that's a whole other topic that people could be, might have some interest in. But, uh, you know, I do think that there's a lot of, there's a lot of people talking about this now, maybe that weren't before. And I think that's where the conversations, even if you can't figure out exactly how to, how to do everything, and that's an important conversation to be having for sure.
Genia: Excellent. Excellent. Thank you very much.
Erica: You're very welcome.
Genia: Thank you so much for joining Erica and I today for this conversation on sibling relationships. I would love to know what you think, what your opinions are about how best to support brothers and sisters to have strong, enduring relationships throughout their lives and what we can do as parents early in our family life in order to maximize those relationships.
Genia: If you're enjoying the Good Things in Life Podcast, and do you think that it would be valuable to other parents and educators, I would love it if you would rate and review the podcast on iTunes. When you rate and review a podcast on iTunes, it encourages the algorithm behind the iTunes to send that information out to other people who care about the same topics. You can rate and review the podcast by going to goodthingsinlife.org/047 and at the top of those show notes, there's a rate and review link. Just click that and I would be so grateful. Thanks very much. Have a great week.
Special thanks to Erica Baker-Tinsley for joining me this week. Until next time!