Welcome to the sibling Leadership Network podcast.

The sibling Leadership Network is a national nonprofit whose mission is to provide siblings of individuals with disabilities the information support and tools to advocate with their brothers and sisters and to promote the issues important to us and our entire families.

Hello, and welcome to another episode of The SLN podcast. Today we will be talking about setting boundaries and self care with our very own Lisa Matthews. Many of you may already know Lisa from her amazing keynote speech at the 2021 SLN conference, and from her long history of disability and sibling advocacy work. Lisa is currently a chief Grants Officer for a nonprofit and serves on the SLN board and was one of the founding members of DC sibs, the Washington DC chapter of the SLN. She also serves on the board for the DC Developmental Disabilities Council, where she is a member of the state plan implementation committee. And as a former chair. Lisa is also a board member of the quality trust for individuals with disabilities where she is a member of the Governance Committee. She also played a vital role in helping launch the bipoc sibling roundtables that the SLN sibling support project and special needs siblings partnered together to facilitate. Lisa is a contributing author on unbreakable spirit, a collection of writings by remarkable and courageous women and breaking the code of silence. Lisa, thank you so much for taking the time to be here with me today and to share with everybody.

Thank you so much for having me here today, Chris. I'm looking forward to the conversation. Awesome. So let's go ahead and dive right in.

I want to start off by speaking about your advocacy work. Lisa, can you tell us a little bit about your current work and what past work and life experiences led you down this path? 

Sure, Chris, some of the things you've mentioned is exactly where a lot of my work has been. In the past year in serving on a number of different boards. You mentioned the DC Council. And with that organization, I have been working with them implementing their five year state plan over the past year. And number of other things I've been doing focuses on doing some volunteer work actually with the mayor's office and getting grant money out into the community is something else that I've really been excited and proud of doing in this past year. So for me, the journey really began in seeking support from myself and my family for more than 15 years ago, after a problem happened in our home that ignited fear in me. For my brother as he was facing some legal issues, I begin navigating the disability service system. I started attending trainings over the years volunteering and joining organizations to learn about supports for families and people with disabilities. And in time for myself, I realized more than anything that by trade, I was over 20 years computer analyst for a nonprofit focused on nursing homes assisted livings and ICF organizations. And I didn't realize it until I really started trying to rebrand myself that I'm a systems person. And so in just even thinking about this piece as it relates to disability, looking at different organizations connecting to get the supports that I needed for my brother for my family, and then ultimately myself, essentially just is what this whole system was to support the whole family. So I didn't realize I was doing it at the time, and then ultimately realized that it was advocacy. 

Nice. That's awesome. It seems like it felt together pretty naturally.

Well, it didn't feel natural. But when it all came, I didn't realize it was happening that way. But I'm wired that way that things just kind of happen in a system mindset. So, yeah.

So at what part of in that journey? Did you say to yourself, hey, I need to take care of me. Can you tell us a little bit about that really? What that realization looked like? What form it took over time and what it looks like today? 

Yeah, sure. Um, you know, I just became burned at both ends. I went through this phase of taking care of everything for everyone. And I found myself not present or focused with work in my health. And it was became a very scary time for me where I needed support. And I didn't have anyone that understood what I needed and could truly support me. And ultimately, I just I was broken. I had this moment in my life where I just didn't know what to do next for myself. And there were just too many things to fix at once that I didn't know what to do first, that I just, I just literally became sick like I just can't even explain it any better than that. I left my job for nearly that I had for nearly 20 years. And I had to Just really begin to do the work to be moved the energy that was around me that wasn't giving me peace. So when I fast forward today, I think about the things that I've learned that I couldn't do in order to pivot from that person with a broken spirit, that I was forced to realize that I can't be responsible for how others lane, If required, be setting hard boundaries that was not popular by those who always counted on me, but necessary to get to the structure that I now require.

That sounds like a difficult path. 

Yeah, it really was, and can still be such. 

Okay, so for any siblings listening out there who haven't even thought of setting their own boundaries yet? What would you say healthy boundaries look like? And why are they so important?

You know, for me, I think I had to, I struggle back and forth with just trying to carve out what was considered healthy for me. And I had to begin with the end in mind, Stephen Covey. They're an instance of like, what would be different in my life as a result of the barriers that I put in front of me, what would ultimately make me happy. And for me, it just required some soul searching to understand what happened even meant, the key for me was getting here and knowing that if I did not try to put these barriers in place, that I was going to continue to lose me. And so for me now, healthy barriers, I realized are just so important and so empowering. I find now that my voice, my self esteem, self esteem, and claiming my power has just been such a resounding difference in who I am as a person, and it has just made such a vast difference. And without those things, I feel the totality of it is that we stay stuck, we stay resentful, and we are unfulfilled. And I was, I could check the box on all three of those things. Absolutely. I'm sure there's many of us listening that can relate. Or people always look to siblings as being resilient because we go through so many different things. But even in being resilient, we need a break.

Even in siblings, given their all or just trying to be everything and anything to everyone, we still need time and space to be able to back away. Even in looking at siblings and being independent, we still need others. And I feel that a lot of the work that I've been doing just even in this past year, like I said, in connecting with different organizations, and just elevating some of the work that I do with the different organizations that I'm a part of, we still need others. And even as kind as people feel that we are in what we do we still need boundaries.

Absolutely.

So I guess taking that a little bit further, what advice would you have to someone who's just starting to set those boundaries for themselves? 

You know, I think the short answer here is just making clear ask of what others expect of you and what you need to be able to have those boundaries. Even when it feels hard, you must commit to tasks, you must commit to keeping those boundaries real for yourself. Because you can't be good for yourself without taking on the heart conversations with people and establishing what those boundaries should look like. Okay, what happens when, you know, you set one of those boundaries, and you give in to one of those boundaries yourself, like, when you make a mistake, you pretty much have to start over with everything that you felt was right in that moment. And those things definitely still happened for me today. Things that you say that you no longer are going to do. you sometimes feel that without you stepping into help, that things could fall through the crack. So you tend to still want to step in and step up and try to help keep those things coasting. And I think and I think I don't know, I don't know, necessarily if it's mainly because we as siblings tend to want to. I've been told I'm controlling. I think it's more of that I want to get things done. I want to get things done, right. But I think the other thing that I've learned in the journey that I'm trying to get on to have these boundaries is in wanting to fix things. I'm also learning to find the tools and resources to try to help empower other people. 

So what advice might you have for anyone listening who has set clear boundaries, but those boundaries have not been respected by their family members or their friends? How do you really get others to listen to your needs to take care of yourself?

Um, you know, this is going to be a forever work in progress. It, I mean, the dynamics of family of work of friendships like all those relationships, there are different pieces and parts in those dynamics that require some limitations and boundaries that we have to set for ourselves. And I feel that I've learned, what's important is to try to understand also what others may feel in the moment when they challenge you, as you will have to draw in on what no longer works for you. Sometimes we have to give in to the things that we say know that we no longer want in order tomso that we are able to support them. But at the same time, when we continue to do this enabling thing, it becomes this dance, that becomes a vicious cycle that people are not able to empower themselves. And I feel that it's so important that while we do draw that line, sometimes it's hard and it's necessary, we have to be clear about what we want. And what we don't want from others, allow people to change, don't allow people to change your mind. And to make you feel bad about your boundaries. When boundaries are not net, we have to be true to declare what we'll do and stick to it, even if it makes us uncomfortable. One story I'll share here is in setting clear boundaries is that I had to step away from managing my brothers day to day programs and services. And that was really hard. Because I'm My Brother's Keeper, I try to be his voice at times that he may not fully understand what's required of the system and the services that he's getting. But what I've recognized is that it was burning me at both ends. And sometimes when we have families that are at the table, and we're not all in agreement to what it is that we feel is best in that moment, it becomes challenging, and so I had to step away. And what has happened as a result of that is that it has empowered family members to stand in and to be that voice and to better understand a lot of the things there. And to be able to appreciate the things that I did do because I'm no longer there. So that in itself is a wind for them to definitely understand that these things I was doing was not necessarily controlling. But it was things that was necessary. 

Absolutely. Thank you.

So many would say that setting boundaries is even of itself, its own self care. What other forms of self care, have you found personally effective? And do you have any recommendations or resources to share with anyone listening? 

Um, you know, have you heard of the phrase say saying no, is the best form of self care, like saying no like that, to me, is just so key saying no, and meaning it because that in itself just can have such a gray area to it. But caring, but and just knowing that by caring for yourself that you're caring for others, we're no good to others if we are not taking care of ourselves, because we have a sense of filling in complete. What I have found personally effective is to make intentional time for me, I set aside time by turning my phone off and just reading some writing, I find ways to just also just continue to be of service to others. Just even in through my volunteer work, I find that that sense of gratitude in helping others is a form of self care for me because I'm just innately a genuine person that likes to help others. I also tried to make different connections by attending meetings, looking up things like on an event bright or Nita just to find searching different things by topics, whatever the mood is, at the moment, if it's something to build up a skill set for work, I will find those groups if it's something to learn something that I'm curious about. It's that if it's self care, if it's something on boundaries, I find a tribe for that moment just to be able to have some of those conversations, to simply be able to share my experiences and to even validate some of the films that I have at the moment.

Nice. What are some things to avoid, if any, when setting one's boundaries and exploring self care?

thinking that there's an end date to setting boundaries is unrealistic? just it's just it's an ever, ever. It's a life cycle. It's a It's truly a life cycle. And it's an ongoing effort that requires patience with yourself to stay firm. It's others to truly understand what what you mean by by setting them. setting boundaries will look different for each of us. And it's a circle of life that we will all constantly have to work on. 

Great advice. Thank you.

How has being a woman of color influenced your journey as a sibling setting boundaries and engaging in self care? What advice might you have for bipoc siblings facing challenges unique to their experience, and anyone else listening who may yet be unaware of how to support siblings in bipoc communities.

Um, I found that isolating growing up, I grew up where there were not other siblings or friends, or families, even that I had conversations or experiences with that had someone living in their home with the disability. What I've learned in doing some of the bipoc roundtable panels is that a lot culturally, a lot of the siblings felt that they didn't talk about disabilities in their families. And I learned a lot of that along the way, in many of the organizations that I started gravitating towards, to try to connect and understand what it meant to not only have a sibling or not only to have the support support services that I need, but to talk with other siblings. It was definitely challenging to open up and to talk about what my experiences were because I'd never talked about them. One of the things that I definitely recognized in the past few years, just even in looking at signet on Facebook, is that regardless of who the individual was, in reading some of the posts, they're the stories have resonated with me in a way that it didn't matter that I was a black woman dealing with a lot of the challenges family dynamics or family dynamics. And so it just definitely helped me understand and feel that it was important to be able to have that shared experience. Regardless of what my background was. I always thought that my experience of having a brother with a disability was unique. And as I said, it wasn't until I represented the sibling Leadership Network, to put together that roundtable that I realized that the panel that they too, had their own unique experiences, and that we all felt that we were just in silos without experiences. So the advice that I would give to bipoc siblings is to just keep showing up in these spaces, and to seek opportunities to be part of networks to share your stories and to connect with other siblings. The advice I would give to others that support bipoc siblings is to take a look at your networks. And if everyone in the room looks the same, consider ways to make your groups more diverse and inclusive. Fostering belongings in groups may start with creating intentional spaces for everyone to increase their cultural awareness. I heard this thing in just doing different dei trainings where it's important for folks to understand here that it's not important enough just to invite people that's different to the party, but let us dance to like let us have a say in a stake at being part of the conversations and the movements that are happening with organizations, and not to simply just check the box for the sake of saying that we have fulfilled our requirements for making our organization diverse. And that does feel that that's really important to say here. 

Absolutely. Thank you. If at all, how has the ongoing pandemic impacted your ability to set boundaries or your self care routine? Have you learned anything helpful from having to adapt?

Um, actually, it has not, if anything, it's unfortunate, obviously, that we're dealing with the pandemic. And so many things are coming to light in just this past year in general that were conversations that were never had. I feel though for me, that has definitely strengthened my boundaries. I have a time I have a space and place that has allowed me to dedicate meaningful and intentional time to focus on things that I just never would have done before. It's allowed me to be more present at work and to join groups that I likely would not have had time for because of just other commitments. So in so many ways, at always said that, if anything coming from this pandemic, if I don't come from this space, being a better person Then I was going in, then shame on me. And I feel that I definitely doing the word nail in fulfilling that promise that I made to myself. 

Very nice. Thank you. Are there any parts of setting boundaries and self care that you still struggle with today? And what are you doing to overcome these challenges?

We learn that it's our responsibility to take care of family growing up. So I struggle with wanting to carve out time for me to do what I want to do. I also still struggle sometimes with self worth just feeling that what I do matter. And if it's still good enough, it definitely has just been a lingering feeling of guilt that comes in waves, honestly, to what I do to try to deal with some of that is that I do still do regular check ins just to see if things are okay with friends and families and so forth. But I don't sign up to take on anything, but I just rather give alternative ways for them to help solve their problems themselves. 

Nice. That's really great advice, something I can definitely learn from.

Good luck.

Yeah. haha

But you're singing my song. Honestly.

It wasn't pretty to get here, Chris. I mean, it really wasn't. I've had so many different changes and challenges over the year. And even in talking about a lot of things as it relates to race. It's been sometimes uncomfortable, even at work, I'm still the only person in the room sometimes. And there definitely have just been a number of different struggles and just trying to figure out where my place should be to where I feel that it's not my job to fix a lot of those issues. But I want to be there in a sense just to kind of know what's happening. And to know that I should be there and I should be seen and I should be heard if there is something that I want to be able to say and share.

Not only setting boundaries as a sibling, but just in general. 

Yeah, yeah. I mean, I think it's it's it's been twofold. I it's my my work life, my personal life, and my advocacy life, like they all align, like there's definitely this synergy there that that exists, that helps me know that the things that I learn, regardless of what the subject matter is, in this space that these things are, can be applied in these other spaces in my life. And the beauty of it is that sometimes they really work, to be able to just find those, those key things to be able to say and do to help support not only yourself, but to be able to help that friend help that family member, help Aaron out issue at work. So definitely in a better space to have this conversation than I was four years, five years from now, when I walked away from my job nearly 20 years ago, it required so much of me just trying to figure out what to do. I mean, imagine walking away from a job of 20 years, and then having to reinvent yourself. And just having to I started with lists, like I'm a list person. And so a lot of times Yeah, I spent one day, not starting my day, because I couldn't find my list. I it was it was just something enemy. Like I can't function because this list just matters. I mean, that list hit list. And so it's just, I felt like these things needed to be done in this meticulous way in order to accomplish some things but, but some of those things are key tools that have helped me along the way. I used to have stickies all over the place, but it just looked a little messy. So I had to move away from that.

I'd be interested to know how many listeners like how many sibling listeners are actually Lisp people. I've met so many siblings that just rely on their lists.

Because there's so many moving parts to things and I guess that too, just ties back to me being a systems person. Because when I did coding in school, I won't say what program it was because then it will tell my age. But clearly, the day that I that the dots connected and I understood what programming was of folks were going out after work and when that light bulb came on, I stayed at work a couple of hours after the fact because it just made sense of how extracting data from this piece of the subset and just kind of being able to just build off of that. And yeah, and so I got good grades and systems design, it's in school, but never could figure it out until much later of what it meant and how it applied to so many areas of my life. 

Nice. Um, so lastly, what are some parting words of encouragement to siblings and advocates who are listening around setting boundaries and self care?

So I love doing conversations where it's either a beginning or an ending with a quote. And so here, this resonated with me. You're not required to set yourself on fire to keep others more. I don't know who wrote that. But I wish it was me. The burnout is real. And as scary as it is to say no to others, we must do it. And we must do it afraid. And we just must just trust the journey.

Absolutely. That's great. Thank you so much for sharing that piece of wisdom.

Lisa, I want to thank you so much for being with us today and sharing everything. It has been an absolute pleasure. Thank you for sharing your wisdom with everyone. 

Thank you so much for having me, Chris. And thank you to the sibling Leadership Network for doing these important podcasts. 

Any resources that we've mentioned during the podcast will be in the description. Make sure to check out our COVID-19 resource center so you can get out there and do it safely.

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.

Transcribed by https://otter.ai