The Sibling Leadership Network

The Sibling Vision; Past, Present & Future

• The Sibling Leadership Network • Season 1 • Episode 16

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In lieu of the SLN’s 15th Anniversary Celebration in October 2022, this month, we are joined by our Executive Director, Katie Arnold to talk about the history of the sibling movement, our current struggles and SLN’s vision for siblings in the future.

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“The future of the sibling movement is really in all of our hands." -Katie Arnold

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Chris Berstler:

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 issue is important to us and our entire families. Hello, and thank you for joining us for another episode of the SLN podcast in lieu of the SLNs 15th anniversary celebration in October 2022. This month, I am joined by our Executive Director, Katie Arnold, to talk about the history of the sibling movement, our current struggles and the SLNs vision for siblings in the future. Katie, welcome back. And thanks again for joining me.

Katie Arnold:

Thanks so much. It's great to be here.

Chris Berstler:

So can you give our audience just a brief history of what the sibling movement has looked like?

Katie Arnold:

Sure, yeah, you know, the sibling movement is really part of the family support movement, as well as the larger disability movement. So thinking about that, and, you know, kind of going back in history, there was a time, you know, back in the early 1900s, when people with disabilities in the US were really pleased in large segregated institutions. And at that time, there was also this thought that siblings were actually one of the reasons that there was this idea that people siblings might be negatively impacted by growing up with a brother or sister with a disability. And that thinking has obviously changed very much over time. But, you know, it's really interesting to think about that. And then how families really did a lot of advocacy to change things, there was lack of services and supports, and also a growing understanding that the conditions within institutions were not really good for people with disabilities. And so families and self advocates really did a lot of work and a lot of advocacy and siblings were part of that to some extent. But siblings weren't often considered to play the same advocacy role that their parents were often called to. And so it's really been kind of leader that the sibling movement has emerged, and siblings have had the opportunity to really come together as a group to learn from each other and to find our own voice in the larger disability advocacy movement. And so that's really kind of the original, you know, kind of way the sibling movement emerged, and how it's continuing to grow throughout the years as more siblings get together and find their voice.

Chris Berstler:

So how does the SLN fit into all of this?

Katie Arnold:

Yeah, so the SLN was really created by seeing a need for more of a focus on the experience of siblings of people with disabilities, there was a lot of work that happened to really bring parents together to have spaces for them to share information with each other, get peer support and connect. There are also spaces for people with disabilities to be able to come together and learn from each other. And with that, actually, SABE or Self Advocates Becoming Empowered the National Organization for people with intellectual and developmental disabilities as whether as well as other disability organizations were formed and created for those spaces for people with disabilities. But there really wasn't a space for siblings to come together until dawn Meyer in 1990, created what's called the sibling Support Project. You know, Don is considered the father of the sibling of sibling support. He developed SIB shops, which are a safe space for young kids to really share their experience with other sibs. And then Don created SIB net in 1996. And that was a way for, you know, siblings across the country and around the world to be able to connect with each other. And that was the real emergence of the first time many siblings were connecting with another said, meeting each other, learning from each other. And so over the years, through more connections, and more adults really meeting each other at different conferences or different events, there was this understanding that we need to create something specifically for siblings, there's a need there. And so with that, there was a national gathering that was held in 2007, where the sibling Leadership Network was born. And the conference really brought together siblings and sibling supporters from across the country for two days have dialogue and action planning, and that's where the mission the purpose and the values of the SLN were formed. Also, working groups were developed around three key areas that the group identified as needs, support and information, research and policy and advocacy. Everyone at the conference got to choose a workgroup to participate in and they were acted after the conference to develop recommendations in those three areas. Those three areas that were created at the inception of the SLN still serve as the pillars of the organization, or the legs on the stool as we sometimes refer to it. So after the first two SLN conferences, we had a group that developed the organizational structure. First, we looked at what organizations were currently out there and initially thought about seeing if the SLN could become part of an already existing entity. This would have been a lot easier in many ways than building a totally new organization from the ground up. The group thoughtfully considered this and decided this would most likely lead to the same thing that had happened historically, siblings would continue to get overlooked in the midst of the other work of the organization, and not have the focused attention that we felt siblings deserve. Also, there seemed to be a need to elevate the sibling perspective, and get the sibling voice to the policy table. When we siblings did connect with each other and get a taste of peer support, we knew there was a need to ensure that more of this happened and that siblings across the country had these opportunities. It was agreed that a new national organization was needed to bring together all the work happening across the country, and provide a stronger collective voice to build awareness of the sibling experience and perspective.

Chris Berstler:

How did you first get involved with the SLN? And how have you seen it grow over the years?

Katie Arnold:

Yeah, so I grew up as the second oldest of five kids and my sister Patrice the middle of all five of us has an intellectual disability and she really shaped my worldview and influence my career path in a big way. It wasn't until college that I really began to think about my own sibling experience. And I decided for my senior thesis, I wanted to interview siblings of people with disabilities. And it was the first time I had really talked to other siblings about what it was like to be a SIB. One of the people that was interested in my research was John Kramer. He is a sibling who was working at the University of Illinois, Chicago, or UIC. And John and I kept connected and him he introduced me to Tamar Heller, who is the Director of the Department of Disability and Human Development at UIC. And that's where I learned about the Disability Studies program at UIC and all of the amazing work that was happening there. Tamar is a sibling, and she was doing work and research with families of people with disabilities, including siblings. So later, I began working with Tamara and John, I attended that first conference that I just talked about, that was held in DC in 2007. And the conference was on a shoestring budget. I mean, we thought we were going to lose money on it, it was a little scary. But we knew it was so important to really bring siblings together. So during the conference, there was a mouse that started scurrying around the room and just freaking people out. And we complained to the hotel, and we got the entire room calm. And it was the only way that we broke even on the event. So while we were mortified at the time that there was like a mouse there at the conference, now we really laugh about it as a fond memory from our first national gathering. So that was like my first start. And then I got connected to all these other great people. I mean, the founders of the sibling Leadership Network are Tamara Heller, Don Meyer, Tom Fisch, and Anne Kaiser along with John Kramer. And I came in help to, to work with that group of team and others it was growing there was there was a lot of interest, but we really didn't know how to start or what to do. So we looked to our brothers and sisters with disabilities as an example. The National self advocacy organization, see, which I mentioned earlier, is really a model for us. So we looked at how they structured their organization, how they have a national board of directors, and they have chapters and states, we made sure to include self advocates, as leaders on our board of directors and as part of our committees to really ensure that as we were growing and developing, we were working with individuals with disabilities. And then in 2010, we created our first official Board of Directors we incorporated as a nonprofit organization. And we actually had some chapters start before the SLN was created. And then we really nurtured the growth of additional chapters throughout the country because the chapters are really the grassroots of the SLN where that more personal contact happens. And each of our Our chapters has its own feel and flavor.

Chris Berstler:

Over your years as Executive Director of the SLN. What have been some real game changing resources that you have seen siblings get some real benefit from?

Katie Arnold:

Yeah, we have a we have a number of things that we've developed over the years. Well, the first thing was the conference. You know, we had that first gathering. That's what created the SLM and the impetus for the organization that we develop. And we continue to have our national conference to really bring siblings across the country and even the world together. Also, the chapters that I mentioned before those chapters are such an essential resources to siblings in those states. And our vision is that every single state will eventually have a SLN chapter. Other things in terms of resources, our future planning resources, planning for the future is such an important issue for families. As the person with a disability gets older, the parents get older thinking about transitions of care and caregiving. So we have developed resources for that. We also have a newer Sib2Sib mentoring program, which has been modeled off of the Parent to Parent Program, where it's really pairing up siblings with each other for peer support for information sharing one on one. And that's been really successful and just a wonderful resource for siblings. And then two other resources that have been great that are also newer and are growing our Sibposiums. Sibposiums are a safe space that siblings have a chance to meet virtually to connect on a topic, we have them on different topics, and we have an expert kick it kick the topic off briefly, and then really just have a forum for siblings to be able to talk with each other about that topic. And then these podcasts, they have been a really great way for us to get information out to a wider audience of siblings, parents and other family members, as well as professionals to really learn more about the sibling experience.

Chris Berstler:

What are some current issues important to the sibling community?

Katie Arnold:

There are a number of issues. The biggest one is future planning, family future planning. I mentioned that before we've developed some resources on it. But you know, so many families worry about what's going to happen in the future? What's going to happen as everyone's getting older, what does the person with a disability want for their future? How do you transition caregiving and support and advocacy from parents to siblings. And we really have discovered that it's so important for families to start the dialogue early. And to give everyone a voice and a choice in the process. Future Planning. Also, you know, when you think about that, that is connected to so many other issues that the SLN is working on to educate our network and advocate around issues of access to health care for people with disabilities, housing, options, employment opportunities, you know, the whole gamut of, you know, just navigating the service system, which is really challenging for families and people with disabilities, and really trying to get information out to our network about that, but also try to advocate to help systems of support work better for families. So really, you know, a lot of the issues are around family support and family caregiving. And that is where you know, the SLN as a national organization, I feel like we have been growing in our advocacy, power and capacity as we grow our network, and also the ability to really just get information out about these important issues to so many people within our network.

Chris Berstler:

What is the best way for anyone listening to get involved?

Katie Arnold:

Yeah, you can join our network online. Our website, sibling leadership.org. It's free, it's easy. You can just sign up on the website. You don't have to be a sibling to get involved sibling supporters or anyone who's support siblings, including family members, professionals, friends and colleagues of siblings. And when you join our network, you'll become connected to a larger, the larger sibling movement that's happening across the country. And you'll also help strengthen the sibling voice so that together we can affect even more change. When you sign up, you'll get access to our electronic newsletter and really get to keep up on what's happening with the sibling movement. So feel free to join at sibling leadership.org

Chris Berstler:

How have siblings from the bipoc community and other marginalized communities helped shape the SLN?

Katie Arnold:

You know, We've had sibs from the bipoc community be part of the SLN family of inception, we've really been intentional about creating a safe space where siblings who are black, indigenous and other people of color, and siblings from other traditionally marginalized underrepresented communities can join together to share stories to learn about resources, and receive information validation and support. We've partnered with two other organizations to launch bipoc sibling roundtables, and these roundtables have featured some remarkable individuals who shared their experiences and perspectives as black, indigenous and other people of color who are navigating life and siblings and people with disabilities. Also, we created our sibling Leadership Network Equity and Inclusion Scholarship Fund, to really remove financial barriers for siblings from all walks of life to attend our national conference. And through the generous support of donors. We had 30 scholarships that we provided to people from 14 different states and five different countries to attend our virtual SLN conference last summer. And then we've also created a Diversity Equity and Inclusion committee that's currently putting together a speaker series around cultural humility to educate our network about ways to acknowledge and attract address implicit bias, combat racial inequity and racism and increase diversity within the network. That's just a little taste of what we're doing. And we're continuing to do more in that area, because we know it's so important.

Chris Berstler:

So this year marks the 15th year that the SLN has been doing its work, can you let the listeners know how we will be celebrating and how they can participate?

Katie Arnold:

Sure, yeah, 15 years, I can hardly believe it. It's a big milestone, and we are so excited to celebrate. So we're planning an event for our founders to celebrate together. And for everyone, we're gonna have a panel of our founders to really be able to share and reflect on the past and all that we've accomplished, and also focus on our vision for the future, to continue to grow the SLN. We also made a goal of raising $15,000 for our 15 year anniversary, which will really help our organization continue to grow and develop continue to support siblings of people with disabilities and their entire families throughout the life course, you know, from when people are born all the way into older adulthood. So we know that we are excited to celebrate, we're excited to both reflect on the past and remember all that we've accomplished, but also really think about the future and everything we want to continue to do for siblings in our networks and their family.

Chris Berstler:

What does the future of the sibling movement look like? And how will the SLN continue to support siblings?

Katie Arnold:

Yeah, you know, my vision for the future as the SLN will increase awareness of the sibling experience so that every CIP gets the support that they need, from their family, from professionals and from peers, you know, the SLN, we're a rapidly growing and evolving organization, we rely on the members that comprise the network to shape and guide our work. We're where we are today, because of the hundreds of dedicated volunteers from across the country who have engaged in us we have a lot more work to do. And we need to continue to find people to share their time and their talent to help us positively impact even more people. You know, we're passionate about making a difference in the lives of siblings of people with disabilities and ultimately, the entire family. And the future of the sibling movement is really in all of our hands. So I see that the SLN is this vehicle to bring together the movement and support agents of change. And I want to invite our all of our listeners, you know, if they have an idea, share it with us if they want to get involved. Join us. The people that participate get to help decide the course that we chart for the future. And there's a lot of exciting possibilities.

Chris Berstler:

Katie, thank you so much for taking the time to share the vision with us and let us know about the 15th anniversary celebration. Coming up any listeners who want to access any of the resources that were mentioned in this podcast, please make sure to check the description and make sure to stay tuned and or sign up for our email newsletter so that we can get information about the upcoming anniversary events to you, Katie, thank you so much.

Katie Arnold:

Thank you.

Chris Berstler:

Find 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