Advice & Resources with SLN's New Executive Director
Jun 12, 2023Season 2Episode 6
The Sibling Leadership Network
This month we speak with the SLN's new Executive Director, Kaitlin McNamara, about her sibling experience, resources she has found helpful and her vision for the future of the sibling movement at SLN.
"We have to be having some very serious conversations about what we want the next 40 years to look like and not resting on the laurels of the really important disability movement work of the last 40 years."—Kaitlin McNamara
This month we speak with the SLN's new Executive Director, Kaitlin McNamara, about her sibling experience, resources she has found helpful and her vision for the future of the sibling movement at SLN.
"We have to be having some very serious conversations about what we want the next 40 years to look like and not resting on the laurels of the really important disability movement work of the last 40 years."—Kaitlin McNamara
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 welcome to another episode of the sibling Leadership Network Podcast. Today, we are joined by our new Executive Director Caitlin McNamara to talk about advice and resources. Caitlin, thank you so much for joining us.
Kaitlin McNamara:
Thanks for having me,
Chris Berstler:
I'd like to just kick things off by asking you to please tell us about yourself, your family and the work that led you to be the new executive director of the SLN.
Kaitlin McNamara:
Sure. So I am a sibling, myself, I'm the oldest daughter of four girls. So there's lots of girls in my family. I have a younger sister Kelsey, who is an adult woman with autism, and an intellectual disability. She's an artist primarily, that's what she does for her job and lives about an hour away from me now. So we're very involved in each other's lives. And I have two younger sisters as well, both of whom now live in the same state as me. So we're very interconnected. In that way. I came to sibling Leadership Network or the work of sibling, obviously, very naturally, as part of my experience with Qlc. But also, it was a kind of natural progression of my education, and my passion for advocacy and for systems level change. I really am very strongly passionate about the idea that, you know, in a democracy, we have to be vocal about the things that need to be adjusted or overhauled. And that people with lived experience should be the ones leading the charge on what needs to look different for the things that they that they have in their lives and that they need in their lives. And siblings are a great partner for people with disabilities. Because we get to travel this road alongside our siblings, and be a support to them as they are championing those things in their lives that need to be improved.
Chris Berstler:
What issues and topics are you most passionate about within the disability and sibling communities and why? Wow, there's so many, but I think the couple that I would want to probably focus on is self determination for both people with disabilities and their siblings. Self Determination is is such an important concept. People need to be in charge of their lives, I think that everybody has the opposite should have the opportunity and has the capacity to tell people what it is that they want, and create a system of support around them to make that as feasible and as safe as possible. And I don't, I really, I think generally don't prescribe to the idea that anybody should have total control over somebody else's decision making. So self determination really is about saying, I'm going to set goals for myself, I'm going to decide the kinds of people I want in my life. And I need and deserve the opportunity to take risks and present myself with new challenges. And learn from my mistakes is the same as everybody else. And that can be in the form of voting or living on your own or, you know, trying a new job. And knowing that there's plenty of opportunity to make mistakes and learn from it and and find new supporters along the way. And for siblings, I think the biggest issue is how to be that kind of support for your family member in a way that is safe and productive and maintains the really important sibling relationship that you should get to have with the members of your family. And also gives you an opportunity to have you know, mental health resources and your own support. Because you know, there are added complications and challenges that come with this particular sibling dynamic. And so making sure that siblings have the supports they need to be good supporters of their family members is part of that whole self determination conversation in your first three months as executive director of the SLN Have you learned anything new about the sibling community? If so, what have you learned?
Kaitlin McNamara:
Oh my goodness, I've learned so much already from being the new executive director of the sibling Leadership Network. Some of this I knew But, but I guess I didn't understand the the depth of it. But there is such a desire for community among siblings. And this truly beautiful connection building that happens from the shared experience that we all have. There are so many diverse sibling experiences, every story of hurt is neat, but at the core of it is this desire to build connections with one another, help other people build happy, healthy, sustainable lives, and be prepared for the challenges that life is gonna throw at you in a way that makes it the most, you know, safe and sustainable for your family in the long run. And so as different as our paths are that we're walking that kind of common goal of just being there for other people in whatever way that we can be, while maintaining our own sanity and safety. And all of that is something that I I'm coming to grips with as I am taking on this new role
Chris Berstler:
in your own sibling journey, what resources and or advice have you found to be most helpful?
Kaitlin McNamara:
Kelsey and I are very close in age, there's only 15 months separating us. So we have walked this sibling path together from the very beginning. You know, I can't remember a time where Kelsey and I weren't kind of joined at the hip, we are always learning and growing together. And I think one of the things that was most helpful to me in that process was having resources, specifically around those transition times in our lives. So when it was school to adulthood, having resources around what transition should look like, and how to not take such a formal approach. In our family, it didn't make sense to be, you know, to get involved with guardianship. And so what other supports were existed out there like supported decision making, and alternatives to guardianship that made it possible for Kelsey to have the support she needed from me and from other people who supported her without that kind of formal system. And now as we've gotten older, we have conversations more around future planning, and what does the long term look like for us as we continue to navigate a sibling journey? How involved is Kelsey want me to be in her day to day life and her care? And how involved does she want me to be in in those moments after her natural supports, shift and change, you know, as my parents age and things like that? So, you know, one of the the resources that we really lean on now are the communities and tools around future planning and financial planning and family planning in general, that, that make it so that we feel confident in the plan we have for our future.
Chris Berstler:
Are there any recent resources that you've come across that listeners might find helpful?
Kaitlin McNamara:
I think that the resources that have been coming out lately, especially around like mental health, and self care, are some important resources for siblings to be accessing, I would just encourage folks to be, you know, connected in some way to a Facebook page or a group. And know that there are lots of really important information and resources being shared there all the time. It's kind of an ever evolving landscape of how we tackle some of these issues. But that staying connected in some ways means that you will see those new resources as they as they crop up. And we'll be able to, you know, find people in community who are also accessing the same things or experiencing the same things. And so I would just encourage folks to stay connected so that they can always be aware of what new stuff is coming,
Chris Berstler:
in your opinion, what areas within the disability and sibling communities currently need the most attention or help?
Kaitlin McNamara:
One of the areas that have focus that I think is probably really important and needs, the most amount of attention is that the disability experience is often very intersectional. It intersects with a lot of different identities that are coming up against their own barriers to access and support and also that that having that intersectional identity for a lot of folks means that there is a compounding effect on their ability to find and access the things that they need at which is true both for people with disabilities and those who are trying to support them. And so recognizing that understanding that building a better space to include all of the voices at the table, and not discounting things that don't just reflect our own lived experience, I think is incredibly important as we think about how it is that we can move this system towards a more comprehensive and inclusive model. Because, you know, there's that saying rising tide lifts all boats. And I think as you think about the disability movement, one of the things that it does really well is create that sort of changing tide, and the wider net that we tasked in that I think makes it more feasible and more sustainable as a form of change.
Chris Berstler:
In what ways can listeners get involved?
Kaitlin McNamara:
Yeah, I think that that's a really important question, because one of the things that we know about siblings is that they have incredibly full lives as it is. And so I would say there, you know, there are big ways that you can get involved finding and connecting with your local chapter, or sibling group, if you have one, starting them, if you don't, is one way to make an impact finding out if your state has a program that helps you become an advocate in this area is another kind of big step that people can take. And so a lot of sibling chapters have connections in that area as well. But then there are smaller ways getting connected on a Facebook group or like, you know, sieve net or the sibling leadership network on Facebook, and Instagram, or, you know, finding just another couple of sibs in your area and having a coffee date kind of thing is, I would say still a medium lift, right, it's, it's still taking time away from the hectic lives that we're leading. And that is, it's worth it, if you can find it. But we also know that families are stretched for time. And that's not always feasible, either, I'd say to just taking some time to learn, even if it's on your own, you know, even if it's listening to something like this podcast, or finding one resource that you're willing to kind of continuously keep up with, and having those conversations with your family, with the your parents with your siblings. That is a way to be involved in this right having ongoing conversations about what your sibling wants out of their life, what your family's plan is, what you what is changing and new and different in your own experience of being a sibling being open with those around you is a way to be involved in this, and is a way to move the conversation forward. So that, you know as more space opens up in your life, you feel more ready to take on a bigger and bigger role in in a movement or a bigger and bigger role in your sibling support or a bigger and bigger role in advocacy and policy change and systems level work.
Chris Berstler:
What is your personal vision for the future of the sibling community?
Kaitlin McNamara:
Man, I am so bad at like putting other putting expectations on other people, right? Like I am very aware of what what is always being asked to folks. But I think siblings are at a really interesting time, we are coming to an age where there was all of this movement and energy around moving into community spaces and helping siblings lived in an inclusive communities, which is fantastic. It's the right thing, and it's the right movement. But a lot of the supports that were built for that are aging and changing. A lot of them are struggling to adapt maybe to technology changes and shifts in the way that the world works. And so siblings have a real opportunity at this moment to sort of partner with their sibling with a disability in this time to say, Hey, thanks, I gotta move and change where you know, we have a caregiver shortage, we have aging families that need help with with future and state planning, we have to be having some pretty serious conversations about what we want the next 40 years to look like, and not resting on the laurels of the really important disability movement work of the last 40 years. And so, in my mind, at least, the vision that I have is just building a strong network of folks who are ready to take on that challenge, ready to have those conversations, and most importantly, just ready to partner with their siblings and with other disability advocates to make sure that the voice of dissent of the disability movement and community is not being drowned out by the status quo or the belief that we did enough in the past and don't need to continue to move forward.
Chris Berstler:
So what role do you see the SLN playing in that vision?
Kaitlin McNamara:
I think that ASAN is really poised To be an important resource and voice in the future of the sibling movement and disability advocacy alongside people with disabilities, but I also think we're in this great moment of transformation. You know, with the new executive director coming on, and the new and fresh ideas coming in, I think it's also important that we hear from our larger community, what it is that they think the SLN can do, and what role they would like to see us play as we're moving into, into this new chapter for for us. And so as we're talking about a strategic plan, and looking at the next five years, we really want to be reaching out to communities and asking them what it is that they think the vision of the sibling movement is going to look like, and what they see the role of SLN being in that. So there'll be opportunities, I think, for folks to answer surveys or join focus groups, and give us that kind of feedback that we need so that we can set some goals and objectives for ourselves that really reflect what the sibling movement is going to be about. And then figuring out how we, how we play into that.
Chris Berstler:
What are you most looking forward to in your role as the executive director of the SLN
Kaitlin McNamara:
I think one of the things that I'm most looking forward to is my own ability to connect with more siblings. I have had really positive experiences my whole life with siblings, and sibling groups, they have always been a source of support. And inspiration for me to continue down this road and this path. One of the things I really love about the siblings that I have known is that they are also disruptors and outside of the box thinkers, and they aren't conformists in a lot of ways to the way that things are or should be. And so I really appreciate that kind of energy around me as I take on this role and thinking about how to continue to be a disruptor in the space of advocacy and to say, like, what is it that the next five years needs? What is it the next 10 years needs? From siblings? And and then how can we serve siblings to make that happen? Because I don't want to just be asking things to folks, I want to be supporting them along that journey as well. And so what kind of mental health resources do people need? What kinds of family supports? How do we take a holistic look at the experiences of siblings and their families and, and make sure that they are able to do the work that needs to be done, and then also able to take the step back that they need to to say I am just a sibling, this week, I am just somebody's brother, or sister, or sibling, I'm just here to celebrate the birthday or go to the graduation and in allowing space for very human moments. I'm hopeful that as an executive director, I can encompass both the advocate side of me and the truly sibling side of me and make that something that is offered to as many siblings across the country as possible.
Chris Berstler:
What advice might you have for any siblings out there listening?
Kaitlin McNamara:
Oh, man, kinda goes back to my like, I don't like to put expectations on other people. I also am pretty afraid of giving advice to folks as if I'm some authority on anything. But I think that the advice that I give my younger sisters to bring it a little closer to home as siblings themselves, is, you know, the best thing that you can do is live full, vibrant lives, and want that for your sibling and for everybody that you meet. And that there is a you know, a lot of ways to live that kind of life. And as long as you are going out into the world and trying to make it a little bit more beautiful, or make it a little bit safer, or make it a little bit brighter for folks, then you're doing it. And there isn't a prescriptive set of steps that anybody can take to be a good sibling, or a good person or a good advocate. You know, there's a lot of ways to go about this, this work and just the experience in general. And so find the way that works for you find the community that's helped support you to do that. And, and have faith and confidence in the fact that that is good and right and that it will do good and right in the world because of it.
Chris Berstler:
Kaitlin, thank you so much for joining us and talking about your vision for the future. I know I'm really excited to see your work and see how the community evolves. Thank you so much. Any resources that Kaitlin mentioned can be found in the description below. Thank you so much for joining us. And Kaitlin, thanks again.
Kaitlin McNamara:
Thank you so much for having me.
Chris Berstler:
Find resources, tools and information about the sibling experience on sibling leadership dot for 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.