June 12, 2023 • 20 mins
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.
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"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
Resources in this episode:
- Future Planning Resources
- Financial Planning Resources
- Mental Health and Self-care Resources
- SLN Youtube Channel
- SLN State Chapters
- SLN Facebook Page
- SLN Facebook Group
- Sibnet Facebook Group
- Sibling Support Project Facebook Group
- Sibteen Facebook Group
"…siblings have a real opportunity at this moment to partner with their sibling with a disability…" —Kaitlin McNamara
Music Credit: Hope by Scandinavianz | https://soundcloud.com/scandinavianz
Music promoted by https://www.free-stock-music.com
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Chris Berstler (00:03):
Welcome to the sibling Leadership Network
podcast. The sibling LeadershipNetwork is a national nonprofit
whose mission is to providesiblings of individuals with
disabilities the information,support and tools to advocate
with their brothers and sistersand to promote the issue is
important to us and our entirefamilies. Hello, and welcome to
(00:24):
another episode of the siblingLeadership Network Podcast.
Today, we are joined by our newExecutive Director Caitlin
McNamara to talk about adviceand resources. Caitlin, thank
you so much for joining us.
Kaitlin McNamara (00:35):
Thanks for having me,
Chris Berstler (00:36):
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 executivedirector of the SLN.
Kaitlin McNamara (00:45):
Sure. So I am a sibling, myself, I'm the
oldest daughter of four girls.
So there's lots of girls in myfamily. I have a younger sister
Kelsey, who is an adult womanwith autism, and an intellectual
disability. She's an artistprimarily, that's what she does
(01:06):
for her job and lives about anhour away from me now. So we're
very involved in each other'slives. And I have two younger
sisters as well, both of whomnow live in the same state as
me. So we're veryinterconnected. In that way. I
came to sibling LeadershipNetwork or the work of sibling,
(01:28):
obviously, very naturally, aspart of my experience with Qlc.
But also, it was a kind ofnatural progression of my
education, and my passion foradvocacy and for systems level
change. I really am verystrongly passionate about the
idea that, you know, in ademocracy, we have to be vocal
(01:52):
about the things that need to beadjusted or overhauled. And that
people with lived experienceshould be the ones leading the
charge on what needs to lookdifferent for the things that
they that they have in theirlives and that they need in
their lives. And siblings are agreat partner for people with
(02:14):
disabilities. Because we get totravel this road alongside our
siblings, and be a support tothem as they are championing
those things in their lives thatneed to be improved.
Chris Berstler (02:29):
What issues and topics are you most passionate
about within the disability andsibling communities and why?
Wow, there's so many, but Ithink the couple that I would
want to probably focus on isself determination for both
people with disabilities andtheir siblings. Self
(02:50):
Determination is is such animportant concept. People need
to be in charge of their lives,I think that everybody has the
opposite should have theopportunity and has the capacity
to tell people what it is thatthey want, and create a system
of support around them to makethat as feasible and as safe as
(03:12):
possible. And I don't, I really,I think generally don't
prescribe to the idea thatanybody should have total
control over somebody else'sdecision making. So self
determination really is aboutsaying, I'm going to set goals
for myself, I'm going to decidethe kinds of people I want in my
(03:33):
life. And I need and deserve theopportunity to take risks and
present myself with newchallenges. And learn from my
mistakes is the same aseverybody else. And that can be
in the form of voting or livingon your own or, you know, trying
a new job. And knowing thatthere's plenty of opportunity to
(03:56):
make mistakes and learn from itand and find new supporters
along the way. And for siblings,I think the biggest issue is how
to be that kind of support foryour family member in a way that
is safe and productive andmaintains the really important
sibling relationship that youshould get to have with the
(04:17):
members of your family. And alsogives you an opportunity to have
you know, mental healthresources and your own support.
Because you know, there areadded complications and
challenges that come with thisparticular sibling dynamic. And
so making sure that siblingshave the supports they need to
be good supporters of theirfamily members is part of that
(04:40):
whole self determinationconversation
in your first three months asexecutive director of the SLN
Have you learned anything newabout the sibling community? If
so, what have you learned?
Kaitlin McNamara (04:51):
Oh my goodness, I've learned so much
already from being the newexecutive director of the
sibling Leadership Network. Someof this I knew But, but I guess
I didn't understand the thedepth of it. But there is such a
desire for community amongsiblings. And this truly
(05:11):
beautiful connection buildingthat happens from the shared
experience that we all have.
There are so many diversesibling experiences, every story
of hurt is neat, but at the coreof it is this desire to build
connections with one another,help other people build happy,
healthy, sustainable lives, andbe prepared for the challenges
(05:33):
that life is gonna throw at youin a way that makes it the most,
you know, safe and sustainablefor your family in the long run.
And so as different as our pathsare that we're walking that kind
of common goal of just beingthere for other people in
whatever way that we can be,while maintaining our own sanity
(05:54):
and safety. And all of that issomething that I I'm coming to
grips with as I am taking onthis new role
Chris Berstler (06:04):
in your own sibling journey, what resources
and or advice have you found tobe most helpful?
Kaitlin McNamara (06:11):
Kelsey and I are very close in age, there's
only 15 months separating us. Sowe have walked this sibling path
together from the verybeginning. You know, I can't
remember a time where Kelsey andI weren't kind of joined at the
hip, we are always learning andgrowing together. And I think
(06:32):
one of the things that was mosthelpful to me in that process
was having resources,specifically around those
transition times in our lives.
So when it was school toadulthood, having resources
around what transition shouldlook like, and how to not take
(06:54):
such a formal approach. In ourfamily, it didn't make sense to
be, you know, to get involvedwith guardianship. And so what
other supports were existed outthere like supported decision
making, and alternatives toguardianship that made it
possible for Kelsey to have thesupport she needed from me and
from other people who supportedher without that kind of formal
(07:16):
system. And now as we've gottenolder, we have conversations
more around future planning, andwhat does the long term look
like for us as we continue tonavigate a sibling journey? How
involved is Kelsey want me to bein her day to day life and her
care? And how involved does shewant me to be in in those
(07:38):
moments after her naturalsupports, shift and change, you
know, as my parents age andthings like that? So, you know,
one of the the resources that wereally lean on now are the
communities and tools aroundfuture planning and financial
planning and family planning ingeneral, that, that make it so
(08:01):
that we feel confident in theplan we have for our future.
Chris Berstler (08:07):
Are there any recent resources that you've
come across that listeners mightfind helpful?
Kaitlin McNamara (08:12):
I think that the resources that have been
coming out lately, especiallyaround like mental health, and
self care, are some importantresources for siblings to be
accessing, I would justencourage folks to be, you know,
connected in some way to aFacebook page or a group. And
(08:35):
know that there are lots ofreally important information and
resources being shared there allthe time. It's kind of an ever
evolving landscape of how wetackle some of these issues. But
that staying connected in someways means that you will see
those new resources as they asthey crop up. And we'll be able
(08:55):
to, you know, find people incommunity who are also accessing
the same things or experiencingthe same things. And so I would
just encourage folks to stayconnected so that they can
always be aware of what newstuff is coming,
Chris Berstler (09:09):
in your opinion, what areas within the disability
and sibling communitiescurrently need the most
attention or help?
Kaitlin McNamara (09:16):
One of the areas that have focus that I
think is probably reallyimportant and needs, the most
amount of attention is that thedisability experience is often
very intersectional. Itintersects with a lot of
different identities that arecoming up against their own
barriers to access and supportand also that that having that
(09:39):
intersectional identity for alot of folks means that there is
a compounding effect on theirability to find and access the
things that they need at whichis true both for people with
disabilities and those who aretrying to support them. And so
recognizing that understandingthat building a better space to
(10:00):
include all of the voices at thetable, and not discounting
things that don't just reflectour own lived experience, I
think is incredibly important aswe think about how it is that we
can move this system towards amore comprehensive and inclusive
model. Because, you know,there's that saying rising tide
(10:21):
lifts all boats. And I think asyou think about the disability
movement, one of the things thatit does really well is create
that sort of changing tide, andthe wider net that we tasked in
that I think makes it morefeasible and more sustainable as
a form of change.
Chris Berstler (10:42):
In what ways can listeners get involved?
Kaitlin McNamara (10:45):
Yeah, I think that that's a really important
question, because one of thethings that we know about
siblings is that they haveincredibly full lives as it is.
And so I would say there, youknow, there are big ways that
you can get involved finding andconnecting with your local
chapter, or sibling group, ifyou have one, starting them, if
(11:06):
you don't, is one way to make animpact finding out if your state
has a program that helps youbecome an advocate in this area
is another kind of big step thatpeople can take. And so a lot of
sibling chapters haveconnections in that area as
well. But then there are smallerways getting connected on a
(11:29):
Facebook group or like, youknow, sieve net or the sibling
leadership network on Facebook,and Instagram, or, you know,
finding just another couple ofsibs in your area and having a
coffee date kind of thing is, Iwould say still a medium lift,
right, it's, it's still takingtime away from the hectic lives
(11:50):
that we're leading. And that is,it's worth it, if you can find
it. But we also know thatfamilies are stretched for time.
And that's not always feasible,either, I'd say to just taking
some time to learn, even if it'son your own, you know, even if
it's listening to something likethis podcast, or finding one
resource that you're willing tokind of continuously keep up
(12:14):
with, and having thoseconversations with your family,
with the your parents with yoursiblings. That is a way to be
involved in this right havingongoing conversations about what
your sibling wants out of theirlife, what your family's plan
is, what you what is changingand new and different in your
own experience of being asibling being open with those
(12:35):
around you is a way to beinvolved in this, and is a way
to move the conversationforward. So that, you know as
more space opens up in yourlife, you feel more ready to
take on a bigger and bigger rolein in a movement or a bigger and
bigger role in your siblingsupport or a bigger and bigger
role in advocacy and policychange and systems level work.
Chris Berstler (13:00):
What is your personal vision for the future
of the sibling community?
Kaitlin McNamara (13:04):
Man, I am so bad at like putting other
putting expectations on otherpeople, right? Like I am very
aware of what what is alwaysbeing asked to folks. But I
think siblings are at a reallyinteresting time, we are coming
to an age where there was all ofthis movement and energy around
(13:25):
moving into community spaces andhelping siblings lived in an
inclusive communities, which isfantastic. It's the right thing,
and it's the right movement. Buta lot of the supports that were
built for that are aging andchanging. A lot of them are
struggling to adapt maybe totechnology changes and shifts in
the way that the world works.
And so siblings have a realopportunity at this moment to
(13:48):
sort of partner with theirsibling with a disability in
this time to say, Hey, thanks, Igotta move and change where you
know, we have a caregivershortage, we have aging families
that need help with with futureand state planning, we have to
be having some pretty seriousconversations about what we want
(14:08):
the next 40 years to look like,and not resting on the laurels
of the really importantdisability movement work of the
last 40 years. And so, in mymind, at least, the vision that
I have is just building a strongnetwork of folks who are ready
to take on that challenge, readyto have those conversations, and
(14:29):
most importantly, just ready topartner with their siblings and
with other disability advocatesto make sure that the voice of
dissent of the disabilitymovement and community is not
being drowned out by the statusquo or the belief that we did
enough in the past and don'tneed to continue to move
(14:51):
forward.
Chris Berstler (14:52):
So what role do you see the SLN playing in that
vision?
Kaitlin McNamara (14:57):
I think that ASAN is really poised To be an
important resource and voice inthe future of the sibling
movement and disability advocacyalongside people with
disabilities, but I also thinkwe're in this great moment of
transformation. You know, withthe new executive director
coming on, and the new and freshideas coming in, I think it's
(15:21):
also important that we hear fromour 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 movinginto, into this new chapter for
for us. And so as we're talkingabout a strategic plan, and
looking at the next five years,we really want to be reaching
(15:42):
out to communities and askingthem what it is that they think
the vision of the siblingmovement is going to look like,
and what they see the role ofSLN being in that. So there'll
be opportunities, I think, forfolks to answer surveys or join
focus groups, and give us thatkind of feedback that we need so
that we can set some goals andobjectives for ourselves that
(16:04):
really reflect what the siblingmovement is going to be about.
And then figuring out how we,how we play into that.
Chris Berstler (16:11):
What are you most looking forward to in your
role as the executive directorof the SLN
Kaitlin McNamara (16:17):
I think one of the things that I'm most looking
forward to is my own ability toconnect with more siblings. I
have had really positiveexperiences my whole life with
siblings, and sibling groups,they have always been a source
of support. And inspiration forme to continue down this road
(16:43):
and this path. One of the thingsI really love about the siblings
that I have known is that theyare also disruptors and outside
of the box thinkers, and theyaren't conformists in a lot of
ways to the way that things areor should be. And so I really
(17:04):
appreciate that kind of energyaround me as I take on this role
and thinking about how tocontinue to be a disruptor in
the space of advocacy and tosay, like, what is it that the
next five years needs? What isit the next 10 years needs? From
siblings? And and then how canwe serve siblings to make that
(17:26):
happen? Because I don't want tojust be asking things to folks,
I want to be supporting themalong that journey as well. And
so what kind of mental healthresources do people need? What
kinds of family supports? How dowe take a holistic look at the
experiences of siblings andtheir families and, and make
sure that they are able to dothe work that needs to be done,
(17:50):
and then also able to take thestep back that they need to to
say I am just a sibling, thisweek, I am just somebody's
brother, or sister, or sibling,I'm just here to celebrate the
birthday or go to the graduationand in allowing space for very
human moments. I'm hopeful thatas an executive director, I can
(18:12):
encompass both the advocate sideof me and the truly sibling side
of me and make that somethingthat is offered to as many
siblings across the country aspossible.
Chris Berstler (18:24):
What advice might you have for any siblings
out there listening?
Kaitlin McNamara (18:28):
Oh, man, kinda goes back to my like, I don't
like to put expectations onother people. I also am pretty
afraid of giving advice to folksas if I'm some authority on
anything. But I think that theadvice that I give my younger
sisters to bring it a littlecloser to home as siblings
(18:48):
themselves, is, you know, thebest thing that you can do is
live full, vibrant lives, andwant that for your sibling and
for everybody that you meet. Andthat there is a you know, a lot
of ways to live that kind oflife. And as long as you are
(19:09):
going out into the world andtrying to make it a little bit
more beautiful, or make it alittle bit safer, or make it a
little bit brighter for folks,then you're doing it. And there
isn't a prescriptive set ofsteps that anybody can take to
be a good sibling, or a goodperson or a good advocate. You
(19:31):
know, there's a lot of ways togo about this, this work and
just the experience in general.
And so find the way that worksfor you find the community
that's helped support you to dothat. And, and have faith and
confidence in the fact that thatis good and right and that it
will do good and right in theworld because of it.
Chris Berstler (19:54):
Kaitlin, thank you so much for joining us and
talking about your vision forthe future. I know I'm really
excited to see your work and seehow the community evolves. Thank
you so much. Any resources thatKaitlin mentioned can be found
in the description below. Thankyou so much for joining us. And
Kaitlin, thanks again.
Kaitlin McNamara (20:13):
Thank you so much for having me.
Chris Berstler (20:16):
Find resources, tools and information about the
sibling experience on siblingleadership dot for the sibling
Leadership Network is anonprofit, and we rely on
support from our audience. Findthe donation button on our
homepage and contribute to theever growing sibling movement.
Welcome to the sibling Leadership Network
podcast. The sibling LeadershipNetwork is a national nonprofit
whose mission is to providesiblings of individuals with
disabilities the information,support and tools to advocate
with their brothers and sistersand to promote the issue is
important to us and our entirefamilies. Hello, and welcome to
(00:24):
another episode of the siblingLeadership Network Podcast.
Today, we are joined by our newExecutive Director Caitlin
McNamara to talk about adviceand resources. Caitlin, thank
you so much for joining us.
Kaitlin McNamara (00:35):
Thanks for having me,
Chris Berstler (00:36):
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 executivedirector of the SLN.
Kaitlin McNamara (00:45):
Sure. So I am a sibling, myself, I'm the
oldest daughter of four girls.
So there's lots of girls in myfamily. I have a younger sister
Kelsey, who is an adult womanwith autism, and an intellectual
disability. She's an artistprimarily, that's what she does
(01:06):
for her job and lives about anhour away from me now. So we're
very involved in each other'slives. And I have two younger
sisters as well, both of whomnow live in the same state as
me. So we're veryinterconnected. In that way. I
came to sibling LeadershipNetwork or the work of sibling,
(01:28):
obviously, very naturally, aspart of my experience with Qlc.
But also, it was a kind ofnatural progression of my
education, and my passion foradvocacy and for systems level
change. I really am verystrongly passionate about the
idea that, you know, in ademocracy, we have to be vocal
(01:52):
about the things that need to beadjusted or overhauled. And that
people with lived experienceshould be the ones leading the
charge on what needs to lookdifferent for the things that
they that they have in theirlives and that they need in
their lives. And siblings are agreat partner for people with
(02:14):
disabilities. Because we get totravel this road alongside our
siblings, and be a support tothem as they are championing
those things in their lives thatneed to be improved.
Chris Berstler (02:29):
What issues and topics are you most passionate
about within the disability andsibling communities and why?
Wow, there's so many, but Ithink the couple that I would
want to probably focus on isself determination for both
people with disabilities andtheir siblings. Self
(02:50):
Determination is is such animportant concept. People need
to be in charge of their lives,I think that everybody has the
opposite should have theopportunity and has the capacity
to tell people what it is thatthey want, and create a system
of support around them to makethat as feasible and as safe as
(03:12):
possible. And I don't, I really,I think generally don't
prescribe to the idea thatanybody should have total
control over somebody else'sdecision making. So self
determination really is aboutsaying, I'm going to set goals
for myself, I'm going to decidethe kinds of people I want in my
(03:33):
life. And I need and deserve theopportunity to take risks and
present myself with newchallenges. And learn from my
mistakes is the same aseverybody else. And that can be
in the form of voting or livingon your own or, you know, trying
a new job. And knowing thatthere's plenty of opportunity to
(03:56):
make mistakes and learn from itand and find new supporters
along the way. And for siblings,I think the biggest issue is how
to be that kind of support foryour family member in a way that
is safe and productive andmaintains the really important
sibling relationship that youshould get to have with the
(04:17):
members of your family. And alsogives you an opportunity to have
you know, mental healthresources and your own support.
Because you know, there areadded complications and
challenges that come with thisparticular sibling dynamic. And
so making sure that siblingshave the supports they need to
be good supporters of theirfamily members is part of that
(04:40):
whole self determinationconversation
in your first three months asexecutive director of the SLN
Have you learned anything newabout the sibling community? If
so, what have you learned?
Kaitlin McNamara (04:51):
Oh my goodness, I've learned so much
already from being the newexecutive director of the
sibling Leadership Network. Someof this I knew But, but I guess
I didn't understand the thedepth of it. But there is such a
desire for community amongsiblings. And this truly
(05:11):
beautiful connection buildingthat happens from the shared
experience that we all have.
There are so many diversesibling experiences, every story
of hurt is neat, but at the coreof it is this desire to build
connections with one another,help other people build happy,
healthy, sustainable lives, andbe prepared for the challenges
(05:33):
that life is gonna throw at youin a way that makes it the most,
you know, safe and sustainablefor your family in the long run.
And so as different as our pathsare that we're walking that kind
of common goal of just beingthere for other people in
whatever way that we can be,while maintaining our own sanity
(05:54):
and safety. And all of that issomething that I I'm coming to
grips with as I am taking onthis new role
Chris Berstler (06:04):
in your own sibling journey, what resources
and or advice have you found tobe most helpful?
Kaitlin McNamara (06:11):
Kelsey and I are very close in age, there's
only 15 months separating us. Sowe have walked this sibling path
together from the verybeginning. You know, I can't
remember a time where Kelsey andI weren't kind of joined at the
hip, we are always learning andgrowing together. And I think
(06:32):
one of the things that was mosthelpful to me in that process
was having resources,specifically around those
transition times in our lives.
So when it was school toadulthood, having resources
around what transition shouldlook like, and how to not take
(06:54):
such a formal approach. In ourfamily, it didn't make sense to
be, you know, to get involvedwith guardianship. And so what
other supports were existed outthere like supported decision
making, and alternatives toguardianship that made it
possible for Kelsey to have thesupport she needed from me and
from other people who supportedher without that kind of formal
(07:16):
system. And now as we've gottenolder, we have conversations
more around future planning, andwhat does the long term look
like for us as we continue tonavigate a sibling journey? How
involved is Kelsey want me to bein her day to day life and her
care? And how involved does shewant me to be in in those
(07:38):
moments after her naturalsupports, shift and change, you
know, as my parents age andthings like that? So, you know,
one of the the resources that wereally lean on now are the
communities and tools aroundfuture planning and financial
planning and family planning ingeneral, that, that make it so
(08:01):
that we feel confident in theplan we have for our future.
Chris Berstler (08:07):
Are there any recent resources that you've
come across that listeners mightfind helpful?
Kaitlin McNamara (08:12):
I think that the resources that have been
coming out lately, especiallyaround like mental health, and
self care, are some importantresources for siblings to be
accessing, I would justencourage folks to be, you know,
connected in some way to aFacebook page or a group. And
(08:35):
know that there are lots ofreally important information and
resources being shared there allthe time. It's kind of an ever
evolving landscape of how wetackle some of these issues. But
that staying connected in someways means that you will see
those new resources as they asthey crop up. And we'll be able
(08:55):
to, you know, find people incommunity who are also accessing
the same things or experiencingthe same things. And so I would
just encourage folks to stayconnected so that they can
always be aware of what newstuff is coming,
Chris Berstler (09:09):
in your opinion, what areas within the disability
and sibling communitiescurrently need the most
attention or help?
Kaitlin McNamara (09:16):
One of the areas that have focus that I
think is probably reallyimportant and needs, the most
amount of attention is that thedisability experience is often
very intersectional. Itintersects with a lot of
different identities that arecoming up against their own
barriers to access and supportand also that that having that
(09:39):
intersectional identity for alot of folks means that there is
a compounding effect on theirability to find and access the
things that they need at whichis true both for people with
disabilities and those who aretrying to support them. And so
recognizing that understandingthat building a better space to
(10:00):
include all of the voices at thetable, and not discounting
things that don't just reflectour own lived experience, I
think is incredibly important aswe think about how it is that we
can move this system towards amore comprehensive and inclusive
model. Because, you know,there's that saying rising tide
(10:21):
lifts all boats. And I think asyou think about the disability
movement, one of the things thatit does really well is create
that sort of changing tide, andthe wider net that we tasked in
that I think makes it morefeasible and more sustainable as
a form of change.
Chris Berstler (10:42):
In what ways can listeners get involved?
Kaitlin McNamara (10:45):
Yeah, I think that that's a really important
question, because one of thethings that we know about
siblings is that they haveincredibly full lives as it is.
And so I would say there, youknow, there are big ways that
you can get involved finding andconnecting with your local
chapter, or sibling group, ifyou have one, starting them, if
(11:06):
you don't, is one way to make animpact finding out if your state
has a program that helps youbecome an advocate in this area
is another kind of big step thatpeople can take. And so a lot of
sibling chapters haveconnections in that area as
well. But then there are smallerways getting connected on a
(11:29):
Facebook group or like, youknow, sieve net or the sibling
leadership network on Facebook,and Instagram, or, you know,
finding just another couple ofsibs in your area and having a
coffee date kind of thing is, Iwould say still a medium lift,
right, it's, it's still takingtime away from the hectic lives
(11:50):
that we're leading. And that is,it's worth it, if you can find
it. But we also know thatfamilies are stretched for time.
And that's not always feasible,either, I'd say to just taking
some time to learn, even if it'son your own, you know, even if
it's listening to something likethis podcast, or finding one
resource that you're willing tokind of continuously keep up
(12:14):
with, and having thoseconversations with your family,
with the your parents with yoursiblings. That is a way to be
involved in this right havingongoing conversations about what
your sibling wants out of theirlife, what your family's plan
is, what you what is changingand new and different in your
own experience of being asibling being open with those
(12:35):
around you is a way to beinvolved in this, and is a way
to move the conversationforward. So that, you know as
more space opens up in yourlife, you feel more ready to
take on a bigger and bigger rolein in a movement or a bigger and
bigger role in your siblingsupport or a bigger and bigger
role in advocacy and policychange and systems level work.
Chris Berstler (13:00):
What is your personal vision for the future
of the sibling community?
Kaitlin McNamara (13:04):
Man, I am so bad at like putting other
putting expectations on otherpeople, right? Like I am very
aware of what what is alwaysbeing asked to folks. But I
think siblings are at a reallyinteresting time, we are coming
to an age where there was all ofthis movement and energy around
(13:25):
moving into community spaces andhelping siblings lived in an
inclusive communities, which isfantastic. It's the right thing,
and it's the right movement. Buta lot of the supports that were
built for that are aging andchanging. A lot of them are
struggling to adapt maybe totechnology changes and shifts in
the way that the world works.
And so siblings have a realopportunity at this moment to
(13:48):
sort of partner with theirsibling with a disability in
this time to say, Hey, thanks, Igotta move and change where you
know, we have a caregivershortage, we have aging families
that need help with with futureand state planning, we have to
be having some pretty seriousconversations about what we want
(14:08):
the next 40 years to look like,and not resting on the laurels
of the really importantdisability movement work of the
last 40 years. And so, in mymind, at least, the vision that
I have is just building a strongnetwork of folks who are ready
to take on that challenge, readyto have those conversations, and
(14:29):
most importantly, just ready topartner with their siblings and
with other disability advocatesto make sure that the voice of
dissent of the disabilitymovement and community is not
being drowned out by the statusquo or the belief that we did
enough in the past and don'tneed to continue to move
(14:51):
forward.
Chris Berstler (14:52):
So what role do you see the SLN playing in that
vision?
Kaitlin McNamara (14:57):
I think that ASAN is really poised To be an
important resource and voice inthe future of the sibling
movement and disability advocacyalongside people with
disabilities, but I also thinkwe're in this great moment of
transformation. You know, withthe new executive director
coming on, and the new and freshideas coming in, I think it's
(15:21):
also important that we hear fromour 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 movinginto, into this new chapter for
for us. And so as we're talkingabout a strategic plan, and
looking at the next five years,we really want to be reaching
(15:42):
out to communities and askingthem what it is that they think
the vision of the siblingmovement is going to look like,
and what they see the role ofSLN being in that. So there'll
be opportunities, I think, forfolks to answer surveys or join
focus groups, and give us thatkind of feedback that we need so
that we can set some goals andobjectives for ourselves that
(16:04):
really reflect what the siblingmovement is going to be about.
And then figuring out how we,how we play into that.
Chris Berstler (16:11):
What are you most looking forward to in your
role as the executive directorof the SLN
Kaitlin McNamara (16:17):
I think one of the things that I'm most looking
forward to is my own ability toconnect with more siblings. I
have had really positiveexperiences my whole life with
siblings, and sibling groups,they have always been a source
of support. And inspiration forme to continue down this road
(16:43):
and this path. One of the thingsI really love about the siblings
that I have known is that theyare also disruptors and outside
of the box thinkers, and theyaren't conformists in a lot of
ways to the way that things areor should be. And so I really
(17:04):
appreciate that kind of energyaround me as I take on this role
and thinking about how tocontinue to be a disruptor in
the space of advocacy and tosay, like, what is it that the
next five years needs? What isit the next 10 years needs? From
siblings? And and then how canwe serve siblings to make that
(17:26):
happen? Because I don't want tojust be asking things to folks,
I want to be supporting themalong that journey as well. And
so what kind of mental healthresources do people need? What
kinds of family supports? How dowe take a holistic look at the
experiences of siblings andtheir families and, and make
sure that they are able to dothe work that needs to be done,
(17:50):
and then also able to take thestep back that they need to to
say I am just a sibling, thisweek, I am just somebody's
brother, or sister, or sibling,I'm just here to celebrate the
birthday or go to the graduationand in allowing space for very
human moments. I'm hopeful thatas an executive director, I can
(18:12):
encompass both the advocate sideof me and the truly sibling side
of me and make that somethingthat is offered to as many
siblings across the country aspossible.
Chris Berstler (18:24):
What advice might you have for any siblings
out there listening?
Kaitlin McNamara (18:28):
Oh, man, kinda goes back to my like, I don't
like to put expectations onother people. I also am pretty
afraid of giving advice to folksas if I'm some authority on
anything. But I think that theadvice that I give my younger
sisters to bring it a littlecloser to home as siblings
(18:48):
themselves, is, you know, thebest thing that you can do is
live full, vibrant lives, andwant that for your sibling and
for everybody that you meet. Andthat there is a you know, a lot
of ways to live that kind oflife. And as long as you are
(19:09):
going out into the world andtrying to make it a little bit
more beautiful, or make it alittle bit safer, or make it a
little bit brighter for folks,then you're doing it. And there
isn't a prescriptive set ofsteps that anybody can take to
be a good sibling, or a goodperson or a good advocate. You
(19:31):
know, there's a lot of ways togo about this, this work and
just the experience in general.
And so find the way that worksfor you find the community
that's helped support you to dothat. And, and have faith and
confidence in the fact that thatis good and right and that it
will do good and right in theworld because of it.
Chris Berstler (19:54):
Kaitlin, thank you so much for joining us and
talking about your vision forthe future. I know I'm really
excited to see your work and seehow the community evolves. Thank
you so much. Any resources thatKaitlin mentioned can be found
in the description below. Thankyou so much for joining us. And
Kaitlin, thanks again.
Kaitlin McNamara (20:13):
Thank you so much for having me.
Chris Berstler (20:16):
Find resources, tools and information about the
sibling experience on siblingleadership dot for the sibling
Leadership Network is anonprofit, and we rely on
support from our audience. Findthe donation button on our
homepage and contribute to theever growing sibling movement.
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