July 18, 2023 • 44 mins
This month, we speak with the SLN's Co-Chairs of Policy and Advocacy, Tiffany Banks and Nina Bihani. We discuss why advocacy is so important for sibs, the many ways sibs can get involved in policy & advocacy, the challenges siblings face in policymaking and current issues being worked on by sibs.
Access the transcript of this episode here.
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"If you're not showing up, you're not going to be a part of that important decision-making process"—Nina Bihani
Resources in this episode:
- SLN Policy & Advocacy Page
- SLN June Policy & Advocacy Newsletter
- Health Passport
- Letter of Intent
- FMLA Reform: The Caring For All Families Act
- SSI Penalties: Arc Info
- Technology Access
- Housing Access: From the Arc
- The Americans with Disabilities Act
- SLN Future Planning Resources Page
- Past SLN Podcasts
- Disability Policy Seminar
- Sign up for SLN Newsletters
- The Arc Future Planning Resources
- Health Advocates While in Hospital
- The Arc Policy & Advocacy Resources
- Partners in Policymaking Training
- Right to Access Health Records
- Death and End of Life Resources
- Tiffany Banks: tiffany.banks@siblingleadership.org
- Nina Bihani: nina.bihani@siblingleadership.org
- SLN Policy & Advocacy Email: policy.inquiries@siblingleadership.org
"What you are able to bring to the table is worthwhile, no matter how small." —Tiffany Banks
"Your lived experience is expertise. " —Tiffany Banks
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 thank you for joiningus for another episode of the
(00:24):
sibling Leadership Networkpodcast. We are joined by our
board co chairs of policy andadvocacy, Tiffany banks and Nina
bihani. We will be discussingthe ins and outs of policy and
advocacy, why it's so importantfor sibs, and how you can get
involved. Thank you both so muchfor speaking with us today.
Tiffany Banks (00:43):
Morning.
Nina Bihani (00:44):
Thank you for having me.
Chris Berstler (00:45):
Please tell us about yourselves and your
experience in policy andadvocacy.
Tiffany Banks (00:50):
Sure, my name is Tiffany banks. I am a licensed
clinical social worker inColorado State and soon to be a
professor at the University ofMaryland, Baltimore County and
their Department of Social Workjust finished my PhD in Social
Work at Colorado StateUniversity, where my research
(01:14):
focus specifically looked at theimpact of policy on siblings and
the human animal bond experiencefor individuals with autism. So
I'm really excited to be here, Igot really into policy only just
a few years ago. My focus as asocial worker has always been on
micro providing direct mentalhealth services to individuals
(01:38):
with disabilities and chronichealth issues back in Maryland,
and here in Colorado. And but Ibegan to really, I think, run
into a lot of issues, where Iwasn't able to do my job to my
fullest ability. And I'm reallythinking about the systems that
we work in and how they impactour day to day. And so my
(02:01):
interest originally, I think,really sprouted with local
policymaking the stuff thatreally impacts right, how we
interpret things on a day to daybasis, from roads and
infrastructure to the communitythat we live in. And all those
little things that make up ourworld. And through my
(02:24):
involvement in the seat, siblingLeadership Network, I also, you
know, really that interested innational level policy and
specifically taking a look atfamily medical leave, and how
workplace culture impactssiblings throughout the United
States, when we have all thesedifferent rules and laws from
state to state. That's me and mybackground and history and
(02:47):
policy. I've been with thesibling Leadership Network in
this role for about five yearsnow and absolutely love it.
Nina Bihani (02:56):
So I currently in training to become a
psychiatrist. I completed myadult psychiatry residency in
Detroit very recently, and I'mnow starting a child psychiatry
fellowship in San Diego. So as adoctor, I think I have a unique
(03:20):
perspective because I, as apatient, I understand how
frustrating the medical systemcan be dealing with insurance,
trying to find the right doctorfor you. And then all of the
various policies that kind ofgovern how we can get our health
(03:42):
care and especially how oursiblings can get access to care.
And then on the flip side, Ialso know that there are certain
pressures that doctors face thatare sometimes you just further
clogging up that process andcreating extra barriers to
providing quality care, in termsof my experiences and policy and
(04:04):
advocacy. When I started thisposition I really hadn't done.
But thanks to my co chairTiffany, who's much more
experienced than I am, we'vebeen able to work on a couple of
things. We worked to make surethat people with IDD were
(04:25):
included as that the IDD ordevelopmental disabilities was
listed as a potential underlyingcondition that would make it
easier for someone to access theCOVID-19 vaccine. It was a lot
of work. But at the same time,it was so much fun and it was
(04:46):
really nice to have, you know,see that progress get made. The
CDC actually recognizing thatdevelopmental disabilities are
an underlying condition thatputs people at higher risk about
outcomes with COVID-19. Andsubsequently saying that people
with developmental disabilitiesshould be prioritized in the
(05:08):
vaccine allocation process.
Chris Berstler (05:10):
Why is sibling advocacy so important?
Tiffany Banks (05:15):
I think that siblings hold a particularly
unique perspective in thecommunity. You know, we just
like parents have a deepconnection to the disability
community. And, and care so muchabout our loved ones. But the
sibling relationship is one thatis often complex and unique. And
(05:35):
I think that voice is oftenmissing from the table. And so
siblings, we are positioned in aunique, we're positioned in a
unique position to bring thatvoice forward to combine our
expertise, right, because assiblings, sometimes we work in
(05:57):
this field. But we're also haveour own unique expertise that
we're bringing in, whether it'swhat we bring to the table, in
addition to our real livedexperience with our sibling. And
so I think that makes us again,particularly unique group to to
help, you know, really amplifythe voice of our community.
(06:19):
We're so huge if we started tothink about how many people in
the United States havedisabilities, and how many of
those people then have not justone sibling, but even multiple
siblings, right? It just makesthat community so much bigger
and amplifies that voice somuch, much more.
Nina Bihani (06:36):
In large part, I almost feel like this is a self
explanatory question. I thinkevery sibling knows that in some
shape or form, you have toadvocate. There's no other
choice whether it is advocatingas a young child, you know,
(06:56):
saying stop bullying my sibling,stop treating my sibling
differently. Advocatingsometimes to our parents to say,
Hey, I know that my siblingrequires more support than I do.
But I still need your attentionand care. And then, you know, as
our siblings grow into adults,there's so many moments when
(07:21):
advocacy becomes necessary,making sure that they have
access to safe and comfortableand accessible housing, making
sure that they have a place togo each day, whether that's
employment for some or otherprogramming for other people,
(07:41):
making sure that they have allof their medical dental vision
needs met. And then making surethat we ourselves are able to
take care of them, whetherthat's because advocating for
position at work that allows yousome more flexibility,
(08:01):
advocating for, you know, beingadvocating with their families
saying, Hey, these are thingsthat I need from other family
members so that I can be moreinvolved in taking care of my
sibling. And then, on a moremacro level, just the policies
(08:23):
that are read in, impact us inour siblings, so greatly I think
a lot of people in the generalpublic will think Well, I'm not
sure how much of what Congressor the President does impacts me
day to day. But that's justfrankly, not true. If you or
(08:45):
your sibling is struggling witha disability, any changes to to
Medicare, Medicaid policy HCBS,which kind of governs all sorts
of like community basedprogramming, all of even the
(09:05):
slightest change can mean a hugeimpact in your you and your
siblings day to day life. And alot of times, if you're not in
the room, or if your voice isn'tbeing represented, then that
means that the people who makethe decisions aren't taking into
account your experiences or yourideas, that decision they're
(09:29):
made by those who show up to theWest Wing. So if you're not
showing up, you're not going tobe part of that decision making
process.
Chris Berstler (09:38):
What are some important examples of how
advocacy has impacted siblingsand our loved ones with
disabilities?
Tiffany Banks (09:45):
Great question. I think one of the most recent
examples that I think highlightsagain that sibling voice and
some of the changes we've seenlately, are during the code
COVID-19 pandemic, right, we sawthat our siblings who maybe were
in congregate care, or were evenliving in other states far away
(10:09):
from us that the pandemic kindof brought us together and
again, really highlighted someof these gaps in again, that
workplace culture, familymedical leave specifically,
right, we're talking about thefact that siblings from the
national perspective are leftout of the definition of family.
And I think, again, as acommunity, when we come together
(10:33):
that way and amplify thosevoices, we're also amplifying
the voices of other familymembers that are being left out,
such as found, found familywrite different types, and
definitions. And so I think as acommunity, we're able not only
to advocate for ourselves andbring our own lived experience
(10:56):
of life, but also to be aplatform and an ally, to other
marginalized and oppressedcommunities across the country.
Nina Bihani (11:03):
So I typically brought up the idea of family
medical leave earlier. Andthat's something that I know
that SLN has been working on forseveral years now. But it's such
an important example of howunique the sibling perspective
is, and also how much that thiscould impact people who are not
(11:25):
involved in the disabilitycommunity. The way that we are
siblings, as the SLM likes topoint out quite often siblings
are usually the longestrelationship you will have in
your life. They know you andyour kids, they know you
wouldn't want through yourawkward puberty phase, your
siblings to know you allthroughout your adulthood. And
(11:47):
it's, frankly, in my opinion, atravesty that siblings are not
included in the legal definitionof who your family is. So when a
sibling is sick, you can't takefamily medical leave, because
siblings aren't consideredfamily. And it's easy for us as
(12:07):
subs. People with developmentaldisabilities to say, well, I can
think of 20,000 scenarios inwhich I might need to take leave
for my, you know, to help out mysibling, but then also consider
other situations, people, youknow, two or three kids grow up
(12:30):
without any health issues ordisability issues. And then one
of those siblings at a somewherein their 40s, or 50s, develops
cancer, would it those siblings,the other siblings want to take
care of that individual who hascancer or be able to take time
off work to help drive them toappointments and sit with them,
(12:53):
their chemo? It's not just aboutpeople who have disabilities and
their family members, it's alsoso many other instances in which
siblings may may be an importantpart of someone's team. And
oftentimes, we, you know, withhow the one thing you know, is
(13:16):
that the future can't bepredicted. So it's better to
advocate improve things forsiblings across the globe. In
different situations, with thework that we do can have a much
broader impact just beyond thedisability community.
Chris Berstler (13:34):
FMLA is a big topic of advocacy. What are some
other current issues thatsiblings are advocating for?
Nina Bihani (13:43):
So I will say another big issue that we've
talked about in the last year ortwo is implementation of the new
988 number. For those who don'tknow, Congress in the last year
or so, basically said that we'restarting a new national number
(14:07):
called 988. That will bespecifically for mental health,
crisis and emergency. So it'sbasically rather than calling
911 If you're experiencing amental health issue, you can
call 988. And the idea issupposed to be that someone who
is trained in dealing withmental health crises, answers
the 988 number. Ideally, thatcan connect you to well, they'll
(14:34):
assess you figure out, you know,is this something that requires
an emergency response? Is thissomething that, you know, can be
treated if they can find aclinic appointment for you? Or
try to figure out otherresources that might be
(14:54):
available to you? And that wayyou can get the help that you
need? You need in a timelymanner. Unfortunately, our
federal legislators and all oftheir wisdom did not really fund
90 Day implementation, they justsaid, it's a number, it's going
(15:15):
to be created, and it will nowexist. So today, if you call
988, and jurisdiction one, youmay get a trained mental health
counselor who can help youaccess emergency outpatient
appointments for to meet with atherapist or a doctor can
(15:38):
possibly send you to variouslocations where you might be
able to get services that you'reimmediately needing, dispatch
someone to your location who canhelp you, and help get you to
where you need to go. And thenin jurisdiction two, you might
just get rerouted to your local911, which is, you know, the
(16:02):
more traditional response, ifthey're going to send someone
out, it might be your local firedepartment at your local EMTs,
your local police officers. Andthen those folks will more
likely than not take you to anemergency room or you'll have to
wait to be seen by some sort ofmental health clinician, you
might be placed on aninvoluntary hold right now
(16:24):
varies widely. Nine, and it hasthe power to really improve
crisis care in this country. Andalso, as I'm sure many people
have seen the headlines, there'scurrently a bit of a mental
health pandemic going on in thecountry, especially when it
(16:45):
comes to children's children'smental health. So I think none
of it has the power to really bea fantastic piece of legislation
that changes things in thecountry, but we need to get it
funded. SLN signed on, insupport of a bill put out by a
Representative Carter heinousthat would increase funding for
(17:10):
nine ADA implementations. As apsychiatrist, I can talk about
mental health forever, butspecific to the sibling
experience. Oftentimes we needto call emergency services for
both ourselves and our siblings.
And when that happens, gettingsomeone who is trained and has a
deeper understanding of what youmight be going through or what
(17:32):
your sibling might be goingthrough is crucial. Police
officers do amazing work, buttheir training mostly involves
apprehending criminals notdealing with mental health
issues. And it's frankly unfairthat we have just kind of as a
country said, well, because wedon't have anyone else to do
(17:52):
this, police officers should dothis. And I think, for those
siblings who have had to callfor a mental health crisis, and
we've gotten a police response,it's probably been a little
jarring. So I think one areathat we're really working to
improve is to fund nine in abetter make sure that
communities across the countrycan get the services that they
(18:15):
need. And hopefully that'lltrickle down and help both
ourselves and our siblings whenwe may be experiencing crisis.
Tiffany Banks (18:25):
So I'll add that when I think about the
priorities of siblings and doingthis advocacy work, and what's
important to us right now, thefirst one to kind of mention
that I think about siblingadvocacy in two different ways.
The first way being that weadvocate for ourselves, right?
We as individuals have our ownunique needs, why do we advocate
(18:47):
for changes and reform and FMLAbecause we as human beings also
require need to have our jobsprotected, and hopefully one day
also have access to that paidfamily medical leave, right,
that's advocacy that siblingsare doing on our own behalf. And
then the other type of advocacythat I think that we do, as
(19:07):
siblings is as allies along thesides of our siblings into in
order to ensure that they havethe best life possible, right,
and that they're really beingempowered with that self
determination to make decisionsabout their lives. And so some
of the issues that are reallyimportant to our siblings right
(19:29):
now that we've heard, throughself advocacy organizations and
the arc are things such asmarriage equality, pain, a lot
of people don't know that socialsecurity income has a marriage
penalty. And so, for oursiblings who are interested in
getting married to anotherperson who has a disability,
(19:50):
they will actually make lessmoney if they get legally
married. And so we see a lot ofpeople postponing or just not
even getting married at allbecause Though it doesn't feel
like an option, right, theyalready live paycheck to
paycheck penny to Penny. So tomake less money, right can be
really devastating. The secondthing that our sibs have been
(20:14):
talking about a lot lately ishousing access. We know that the
ATA has been here for quite sometime now, right. But we still
don't necessarily have privateresidences that are accessible.
And when I talk about access, Idon't just mean physical access
of being able to get in and out,but also having houses that are
(20:35):
in good quality neighborhoodsthat have access to other types
of services around them, such asbus stations, emergency medical,
things of that nature, right. Soaccess goes beyond things like
ramps and stairs. So thinkingabout housing access from this
much bigger perspective. Andthen I think the third one that
(21:00):
I wanted to point out are somesome bills around technology
access, right, and thinkingabout the future of disability,
and how we're using technologyand what that really costs,
right. So not everyone hasaccess to high speed internet,
(21:20):
not everyone has access to webcameras, like we're using here
as we're talking, right. And sowe want to make sure that as
we're progressing, thatindividuals with disabilities
have access to the things thatcan also make their life, right,
more independent orinterdependent, right, no one's
(21:41):
fully ever independent. Sopardon my language there, there
are some great federal levelpieces of legislation addressing
all three of those things rightnow. So
Chris Berstler (21:53):
what are the main challenges that siblings
face in advocacy?
Tiffany Banks (21:58):
Well, I think we've already pointed out that
we're not included in thedefinition, right? So just
simply not being seen. Or heard,right, or even like looked at as
a stakeholder, I thinkoftentimes, you know, no one's
stopping to go like, Whoa,there's not a sibling involved
in making this decision. Sothat's an issue of right out of
(22:20):
the gate.
Nina Bihani (22:22):
I think time is, is a very precious commodity. And,
you know, none of us haveenough. Yeah, I think finding
the time to speak up to put youknow, your words on paper or
keyboard, or can make a call toa legislator write a letter,
(22:43):
that all takes time. And itthere's also kind of an
emotional cost to it. As Tiffanymentioned, at the top, we face
unique challenges because of ourunique experiences. And
oftentimes, in order to convincethe people in power to make
(23:03):
changes that will benefit us, wehave to explain our
circumstances, our challenges,our pain, and that can be really
exhausting, both emotionally andphysically. So I think a lot of
people think that if you are anadvocate, you have to show up
(23:26):
every single day, with thisfiery intensity, you have to
channel your inner ErinBrockovich. And that's, that's
just not the case. You can, youknow, you can lend your voice
when you have the the time andthe energy and the emotional
(23:46):
capacity to do so. And if thereare other issues that come up,
and you can't lend your voice,because you don't have that, in
the moment, that's okay, therewill be there lots of us. And,
you know, you're not required toshow up and be front and center
for every single issue. You canpick and choose. And there might
(24:09):
be issues you care deeply about.
But on some days, you just needto take a break from and that's
perfectly okay.
Tiffany Banks (24:16):
Nina, you actually remind me of, I think
one of the biggest barriers thatI wasn't even thinking about
when Chris asked the question orthinking about coming into this,
but siblings, we often have tohold to emotions that are
really, like logicallyincongruent. And then same time,
(24:38):
and we're not often get like,taught how to do that. Right.
And so I think, you know,understanding that your sibling
is somebody who makes youincredibly happy and also is
probably associated with some ofthe hardest times in your life
and someone you've feltresentful about and you The back
(25:01):
and forth and the combinationright of those two extremes is
an thing that I think a lot ofpeople avoid, right. Like as
mental health people, I don'twant to get like too touchy
feely here, but I think a lot ofus don't, don't try and sit with
those two things, right? We wantto reconcile one and then like,
get rid of it and focus on justone emotion and our lives as
(25:22):
siblings have never been thatblack and white. It's always
been in this gray, unknown.
damned if you do damned if youdon't kind of, like position.
And I think that that barrierreally encompasses and shades
like everything that we do.
Nina Bihani (25:46):
Yeah, I definitely agree. And, yeah, I feel like
sometimes, at least for me,there's, you know, it's almost
holding three emotions, becausethere's also, you know, my
parents who have their ownexperiences and their own
(26:07):
struggles, and occasionally turnto me for help. Because we're
family, and that's what we dofor each other. But also to feel
like, you know, you want to takecare of your parents, you want
to lessen their burden, and yousee them getting older. And
(26:29):
dealing with, you know, theirown challenges. You want to help
her sibling you want to, youknow, make life better for them,
you see all of the challengesthat they face, you see how they
navigate a world that it's notat all designed for them. And
then you want to take care ofyourself, you want to live your
own life and want to, you know,fall in love and struggle in
(26:52):
your own career and maybe makesome dumb choices along the way.
Have fun, step away from thefamily that you grew up in, so
that you can be your own person.
So it's definitely a struggleand trying to tell, you know, a
change maker, hey, Congressman,my life has been so complicated,
(27:14):
and this policy that you havethe power to change would really
make an impact on my day to daylife, that can be pretty
emotionally taxing. So I thinkthe biggest thing for me is
making sure that you are makingtime and space to take care of
yourself, and then not feelinglike you need to constantly be
(27:35):
jumping on to everything. Andlending your voice and always
calling people and writingletters you can pick and choose
based on, you know, how muchfeeling you have in the tank, in
a given moment.
Chris Berstler (27:55):
What challenges and or barriers are there to
marginalized communities toadvocating with their brothers
and sisters.
Nina Bihani (28:03):
I think it's more of the same, but then the added
difficulty of being from amarginalized group. I am the
child of immigrants. I'm alesbian. So I am married to
someone who's also a sibling,and also someone of color. And
(28:29):
we, you know, being from amarginalized community, of
course, it's harder to get yourvoice heard. It's harder to get
yourself into the mainstream soto speak, you may have to change
certain aspects of yourself tomake yourself more palatable.
(28:54):
I'm saying that verysarcastically to the, to the
people in power. So you have tokind of go through this process
of making sure that you aresaying things that people are
going to listen to because it'sall about messaging, right, you
(29:14):
have to really hone your messageto make sure that the person who
has the power to make thatchange is going to hear it. And
then at the same time, you haveto face all of the challenges
that come with being part of amarginalized community. And you
also have to recognize that yoursibling belongs to that
marginalized community and theyare going to be even further
(29:36):
misunderstood. We havedefinitely within our
communities seen, you know,diagnosis is often delayed or
missed. For people who belong tomarginalized communities. They
are less likely to get highquality services or be able to
(29:59):
act Have the medical care andtherapeutic care that they need,
they are less likely to haveaccess to adequate housing.
Oftentimes, even things likehaving access to food security
and healthy food, everythingthat you hear about in the news
(30:20):
that you may know from personalexperience all of those
challenges that people inmarginalized communities face,
plus the difficulty of having asibling with a disability plus
the knowledge that thatdefinitely with the disability
is not just marginalized becauseof their disability, but also
because of other factors. Soit's just kind of a bunch of
(30:44):
things being piled on top ofeach other.
Tiffany Banks (30:47):
I can amplify everything that Nina's already
said, I think that it was spoton, right in thinking about the
intersectional identities andhow that impacts, you know, the
work in the barriers, I thinkone of the really important
things is we've alreadymentioned how much time it
takes, right. And so when wethink about people with
(31:09):
intersectional, marginalizedidentities, we really start to
think about who has access tothings and the choice and the
ability to do this kind of work,right? If you are an individual
who's an hourly worker livingbelow the poverty line, you are
likely not going to have thetime to, you know, maybe fly out
(31:29):
to DC and do you know, meetingsand participate in the
disability policy seminar and doall that kind of stuff, right?
And so there's what you haveaccess to drastically changes.
And so, you know, with thatsaid, of course, there's other
ways of people to still getinvolved without doing all those
types of things. Even justtalking to friends and family,
(31:51):
right, and educating andspreading that information and
putting away this informationand disproving that make sure
that you're, you know, smallnetwork of community knows
what's going on. Even that typeof advocacy can be just
completely life changing foranyone and everyone. And so,
(32:12):
always remember that when youare faced with these barriers
and obstacles that you know,what you are able to bring to
the table is still worthwhile,no matter how small.
Nina Bihani (32:21):
I would argue it maybe even more worthwhile
because that intersectionalperspective is going to help you
understand some nuances thatmaybe others who don't have that
perspective, will not be awareof, for
Chris Berstler (32:37):
any beginning advocates listening, what advice
can you share about how to beststart their advocacy journey
with their sibs?
Tiffany Banks (32:44):
Talk to your sib about what's important to them?
Right, like I said, there's twokinds of branches as of sibling
advocacy. And certainly when itcomes to things that directly
impact your SIP their voice, isthe most important voice in that
room. Right. So we're using ourpower and privilege as able
bodied siblings of our lovedones, to be great allies. We
(33:11):
can't do that unless we firststopped and listened to the
actual self advocate.
Nina Bihani (33:17):
Unfortunately, oftentimes, my brother can't
really vocalize or share what hewould want in a specific
situation, his support needs arepretty high. So then we're kind
of put in this position where wehave to guess and we have to
assume, I think as siblings,we're in a unique perspective
where we sometimes watch ourparents treat our sibling like a
(33:41):
little kid, even when they're anadult. And no matter how high or
low someone support needs are,it's important to make sure that
they are, are treated with therespect and the dignity that
they deserve. So I think,honestly, some of my advocacy
(34:02):
stuff started on my own familywith telling my parents Hey,
he's, he's in his 20s. Now, theycan't be doing, he'll be talking
to him like this, that we can'tbe treating him like this. He,
if he wants to wear specificcolor every day, then that's
fine. Why are we fighting him onthis? He's, you know, he's not a
child. So kind of putting thatout there. And I also just
(34:27):
wanted to take a moment to talkabout medical advocacy. If you
are the person who is takingyour sibling to the doctor,
spend some time researchingdoctors find someone who maybe
has some experience working withintellectual disabilities. There
is a new law that makes itpossible for everyone to request
(34:49):
their medical records. So goahead and do that. Make sure
that your doctor is documentingthings correctly. And that also
makes it easier when you have tojump between specialists
specialist, you can just have afile where you can say, well,
this is why the psychiatriststarted my sibling on this
medicine. But then, you know,the neurologists was concerned
(35:13):
about it worsening my siblings,seizure disorder or something of
that nature. And then keeping inmind that when someone with a
disability is hospitalized, theyare entitled to an advocate,
this is an issue that came upduring COVID-19. When hospitals
(35:34):
are limiting visitors, yoursibling is always entitled to an
advocate to help themcommunicate in a medical
setting. There is somethingcalled the Health passport. And
it's kind of a way to log youraceptas health data succinctly
and in an accessible format, sothat you can kind of just give
(35:55):
that to your service medicalteam if they're ever admitted to
a hospital. And then the lastthing I wanted to talk about
was, this is a hard thing tobring up. But it's better to
have open conversations aboutthis talk about end of life
issues. Talk about with yourfamily, if our sibling is in a
(36:16):
situation, where they mightrequire hospice or palliative
care, or, you know, for some ofour siblings, it might be that a
bout of pneumonia could be muchmore life threatening than it
would be for the generalpopulation. So kind of having
that discussion of do we wantour sibling to live on a
(36:37):
ventilator? How long? What our,as a family, what do we want?
And whenever possible, includingyour siblings voice and asking
them now when they're healthy?
And well, what would you want isreally important. And then I
also just wanted to bring up theidea of the letter of intent
form. You can find it online,it's it's talks about how family
(37:01):
members would want futurecaregivers to take care of their
loved one with a disability. Soit's something that's all about
planning for the future. Howwould we want someone to, you
know, take care of things, whatwhat types of things do we want
(37:22):
to make sure are always includedin siblings life, for my
brother, he loves his Bollywoodmusic, totally obsessed with it.
I, you know, eat long after I'mgone and my parents are gone, I
would want to make sure that hiscaregivers are still giving him
access to his music. Because asthe youngest member of our
(37:42):
family, that's a reality that,you know, he might be around the
longest. And I know that that'ssomething that will always bring
Him joy. And I also know thatsomeone who doesn't know him may
just not even know whatBollywood music is, and may not
be able to provide it with him,just due to a lack of knowledge
about who he is.
Tiffany Banks (38:05):
I just wanted to add anyone who's starting their
policy and advocacy journey, whodoesn't have that background and
understanding the history ofdisability policy, could be
really important to take a lookat some of the resources out
there. So for example, wedefinitely recommend the policy,
(38:26):
the Partners in Policymakingprogram, I just wrote about it
in our June 2023 newsletter.
That is an excellent source ofinformation for anyone in the
disability community, who's astakeholder who wants to get
involved, right, that goes overthe history of what's happened
thus far, as well ashighlighting all of those
(38:47):
current issues and, andsupporting educating individuals
how to navigate these systems.
At the SLN. We do also have somepast I think podcasts and
webinars and resources that talkabout some of the basic tips
that Nina and I have given forindividuals who are starting to,
(39:08):
you know, look at bills for thefirst time that talks about how
to read them, what types ofthings to look for. And so
taking a look at some of thatinformation, because it is
important when you are limitedon time to make sure that you
are identifying the place whereyou're going to have the biggest
impact. And so, taking a look atsome of those resources can be
(39:28):
really helpful.
Chris Berstler (39:30):
What policy and advocacy resources would you
recommend to siblings?
If you have not heard of thedisability policy seminar that
is held in DC every year that isa really great resource. Whether
you are a first timer or a youknow, life long professional
advocate here, right. It is anopportunity one to hear lots of
(39:57):
amazing speakers in our network.
To talk about the currentissues, but also each state will
have opportunities to speak withtheir legislators and let or
legislative aides to practicesome giving those pitches and
talking about the issues. And soit's a really unique opportunity
(40:19):
not just to learn, but toactually put it into practice,
and do some advocacy work withthe support and assistance of
some of those great, amazingprofessionals and alongside self
advocates. So that is an amazingevent that is held every year,
definitely recommend.
Nina Bihani (40:40):
If you can't attend that event, or at least not this
year, the Arc has some wonderfulonline resources. And not to
toot our own horn for a minute,the SLN puts out a policy and
advocacy newsletter, about everymonth, we've definitely missed a
month. So sorry about that. Butwe try to pull together
(41:04):
resources from multiple groups,and kind of distill things as
succinctly as we can for subs.
So even just going through someof our older newsletters, and
looking at resources that mightbe helpful to things that you
and your family and your siblingare dealing with.
Chris Berstler (41:24):
What other words of advice might you have to
share with any sibling advocateslistening?
Tiffany Banks (41:30):
Your lived experience is expertise, you do
not need a degree from auniversity, you do not need, you
know, any special training toknow that what you have lived is
real, and is believable and isworthwhile. And that it is
(41:51):
important and you know, canreally make a difference by
sharing that story.
Nina Bihani (41:55):
Yes, exactly your voice matters, your your
thoughts, your ideas, yourexperiences, that all matter,
talk, talk about them, talk topeople in power, about your
ideas about your needs, aboutyour wants, whether that's you
know, someone of authority atyour sips group home or school
(42:18):
or in the doctor's office, orwhether that's your local city
council, your state government,your federal government, your
voice matters. And beyond that,recognizing that you're, you
have the ability to amplify yoursiblings voice. So sometimes it
(42:39):
might be not even about youtalking but about you making
sure that your sibling gets tobe heard. But beyond that, I
think also recognizing thatthere are 1000s, probably of
other siblings out there who aredealing with the issues that
you're dealing with. SLN is hereto help amplify our voices as a
(42:59):
group, and also to providesupport to each other. So when
you were struggling, we're herefor you. So please remember,
your voice matters. Yourthoughts matter. Your ideas
matter. And the world deservesto hear them. If you listen to
this podcast, and you want totalk to Tiffany and I directly
(43:20):
about something, anything,please reach out, email us.
Tiffany Banks (43:25):
We're here to take, I think you know other
thoughts too. Sometimes I hearfrom siblings who have a piece
of policy that is important tothem that month and they reach
out to me and asked me tohighlight it in the upcoming
newsletter. totally happy to doso. We are not experts on, you
know, every piece of policy inevery state across the entire
(43:48):
United States. So if there'ssomething that is important to
you feel free to throw it ourway and we can absolutely look
into highlighting it andincluding it in our next
newsletter.
Chris Berstler (44:00):
Awesome. Thank you both so much for joining us
today and talking about policyand advocacy. any resources that
Nina and Tiffany have mentionedduring the podcast you can find
in the podcast descriptionbelow. We look forward to
advocating with you thank youboth so much.
Nina Bihani (44:17):
Thank you.
Chris Berstler (44:20):
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 thank you for joiningus for another episode of the
(00:24):
sibling Leadership Networkpodcast. We are joined by our
board co chairs of policy andadvocacy, Tiffany banks and Nina
bihani. We will be discussingthe ins and outs of policy and
advocacy, why it's so importantfor sibs, and how you can get
involved. Thank you both so muchfor speaking with us today.
Tiffany Banks (00:43):
Morning.
Nina Bihani (00:44):
Thank you for having me.
Chris Berstler (00:45):
Please tell us about yourselves and your
experience in policy andadvocacy.
Tiffany Banks (00:50):
Sure, my name is Tiffany banks. I am a licensed
clinical social worker inColorado State and soon to be a
professor at the University ofMaryland, Baltimore County and
their Department of Social Workjust finished my PhD in Social
Work at Colorado StateUniversity, where my research
(01:14):
focus specifically looked at theimpact of policy on siblings and
the human animal bond experiencefor individuals with autism. So
I'm really excited to be here, Igot really into policy only just
a few years ago. My focus as asocial worker has always been on
micro providing direct mentalhealth services to individuals
(01:38):
with disabilities and chronichealth issues back in Maryland,
and here in Colorado. And but Ibegan to really, I think, run
into a lot of issues, where Iwasn't able to do my job to my
fullest ability. And I'm reallythinking about the systems that
we work in and how they impactour day to day. And so my
(02:01):
interest originally, I think,really sprouted with local
policymaking the stuff thatreally impacts right, how we
interpret things on a day to daybasis, from roads and
infrastructure to the communitythat we live in. And all those
little things that make up ourworld. And through my
(02:24):
involvement in the seat, siblingLeadership Network, I also, you
know, really that interested innational level policy and
specifically taking a look atfamily medical leave, and how
workplace culture impactssiblings throughout the United
States, when we have all thesedifferent rules and laws from
state to state. That's me and mybackground and history and
(02:47):
policy. I've been with thesibling Leadership Network in
this role for about five yearsnow and absolutely love it.
Nina Bihani (02:56):
So I currently in training to become a
psychiatrist. I completed myadult psychiatry residency in
Detroit very recently, and I'mnow starting a child psychiatry
fellowship in San Diego. So as adoctor, I think I have a unique
(03:20):
perspective because I, as apatient, I understand how
frustrating the medical systemcan be dealing with insurance,
trying to find the right doctorfor you. And then all of the
various policies that kind ofgovern how we can get our health
(03:42):
care and especially how oursiblings can get access to care.
And then on the flip side, Ialso know that there are certain
pressures that doctors face thatare sometimes you just further
clogging up that process andcreating extra barriers to
providing quality care, in termsof my experiences and policy and
(04:04):
advocacy. When I started thisposition I really hadn't done.
But thanks to my co chairTiffany, who's much more
experienced than I am, we'vebeen able to work on a couple of
things. We worked to make surethat people with IDD were
(04:25):
included as that the IDD ordevelopmental disabilities was
listed as a potential underlyingcondition that would make it
easier for someone to access theCOVID-19 vaccine. It was a lot
of work. But at the same time,it was so much fun and it was
(04:46):
really nice to have, you know,see that progress get made. The
CDC actually recognizing thatdevelopmental disabilities are
an underlying condition thatputs people at higher risk about
outcomes with COVID-19. Andsubsequently saying that people
with developmental disabilitiesshould be prioritized in the
(05:08):
vaccine allocation process.
Chris Berstler (05:10):
Why is sibling advocacy so important?
Tiffany Banks (05:15):
I think that siblings hold a particularly
unique perspective in thecommunity. You know, we just
like parents have a deepconnection to the disability
community. And, and care so muchabout our loved ones. But the
sibling relationship is one thatis often complex and unique. And
(05:35):
I think that voice is oftenmissing from the table. And so
siblings, we are positioned in aunique, we're positioned in a
unique position to bring thatvoice forward to combine our
expertise, right, because assiblings, sometimes we work in
(05:57):
this field. But we're also haveour own unique expertise that
we're bringing in, whether it'swhat we bring to the table, in
addition to our real livedexperience with our sibling. And
so I think that makes us again,particularly unique group to to
help, you know, really amplifythe voice of our community.
(06:19):
We're so huge if we started tothink about how many people in
the United States havedisabilities, and how many of
those people then have not justone sibling, but even multiple
siblings, right? It just makesthat community so much bigger
and amplifies that voice somuch, much more.
Nina Bihani (06:36):
In large part, I almost feel like this is a self
explanatory question. I thinkevery sibling knows that in some
shape or form, you have toadvocate. There's no other
choice whether it is advocatingas a young child, you know,
(06:56):
saying stop bullying my sibling,stop treating my sibling
differently. Advocatingsometimes to our parents to say,
Hey, I know that my siblingrequires more support than I do.
But I still need your attentionand care. And then, you know, as
our siblings grow into adults,there's so many moments when
(07:21):
advocacy becomes necessary,making sure that they have
access to safe and comfortableand accessible housing, making
sure that they have a place togo each day, whether that's
employment for some or otherprogramming for other people,
(07:41):
making sure that they have allof their medical dental vision
needs met. And then making surethat we ourselves are able to
take care of them, whetherthat's because advocating for
position at work that allows yousome more flexibility,
(08:01):
advocating for, you know, beingadvocating with their families
saying, Hey, these are thingsthat I need from other family
members so that I can be moreinvolved in taking care of my
sibling. And then, on a moremacro level, just the policies
(08:23):
that are read in, impact us inour siblings, so greatly I think
a lot of people in the generalpublic will think Well, I'm not
sure how much of what Congressor the President does impacts me
day to day. But that's justfrankly, not true. If you or
(08:45):
your sibling is struggling witha disability, any changes to to
Medicare, Medicaid policy HCBS,which kind of governs all sorts
of like community basedprogramming, all of even the
(09:05):
slightest change can mean a hugeimpact in your you and your
siblings day to day life. And alot of times, if you're not in
the room, or if your voice isn'tbeing represented, then that
means that the people who makethe decisions aren't taking into
account your experiences or yourideas, that decision they're
(09:29):
made by those who show up to theWest Wing. So if you're not
showing up, you're not going tobe part of that decision making
process.
Chris Berstler (09:38):
What are some important examples of how
advocacy has impacted siblingsand our loved ones with
disabilities?
Tiffany Banks (09:45):
Great question. I think one of the most recent
examples that I think highlightsagain that sibling voice and
some of the changes we've seenlately, are during the code
COVID-19 pandemic, right, we sawthat our siblings who maybe were
in congregate care, or were evenliving in other states far away
(10:09):
from us that the pandemic kindof brought us together and
again, really highlighted someof these gaps in again, that
workplace culture, familymedical leave specifically,
right, we're talking about thefact that siblings from the
national perspective are leftout of the definition of family.
And I think, again, as acommunity, when we come together
(10:33):
that way and amplify thosevoices, we're also amplifying
the voices of other familymembers that are being left out,
such as found, found familywrite different types, and
definitions. And so I think as acommunity, we're able not only
to advocate for ourselves andbring our own lived experience
(10:56):
of life, but also to be aplatform and an ally, to other
marginalized and oppressedcommunities across the country.
Nina Bihani (11:03):
So I typically brought up the idea of family
medical leave earlier. Andthat's something that I know
that SLN has been working on forseveral years now. But it's such
an important example of howunique the sibling perspective
is, and also how much that thiscould impact people who are not
(11:25):
involved in the disabilitycommunity. The way that we are
siblings, as the SLM likes topoint out quite often siblings
are usually the longestrelationship you will have in
your life. They know you andyour kids, they know you
wouldn't want through yourawkward puberty phase, your
siblings to know you allthroughout your adulthood. And
(11:47):
it's, frankly, in my opinion, atravesty that siblings are not
included in the legal definitionof who your family is. So when a
sibling is sick, you can't takefamily medical leave, because
siblings aren't consideredfamily. And it's easy for us as
(12:07):
subs. People with developmentaldisabilities to say, well, I can
think of 20,000 scenarios inwhich I might need to take leave
for my, you know, to help out mysibling, but then also consider
other situations, people, youknow, two or three kids grow up
(12:30):
without any health issues ordisability issues. And then one
of those siblings at a somewherein their 40s, or 50s, develops
cancer, would it those siblings,the other siblings want to take
care of that individual who hascancer or be able to take time
off work to help drive them toappointments and sit with them,
(12:53):
their chemo? It's not just aboutpeople who have disabilities and
their family members, it's alsoso many other instances in which
siblings may may be an importantpart of someone's team. And
oftentimes, we, you know, withhow the one thing you know, is
(13:16):
that the future can't bepredicted. So it's better to
advocate improve things forsiblings across the globe. In
different situations, with thework that we do can have a much
broader impact just beyond thedisability community.
Chris Berstler (13:34):
FMLA is a big topic of advocacy. What are some
other current issues thatsiblings are advocating for?
Nina Bihani (13:43):
So I will say another big issue that we've
talked about in the last year ortwo is implementation of the new
988 number. For those who don'tknow, Congress in the last year
or so, basically said that we'restarting a new national number
(14:07):
called 988. That will bespecifically for mental health,
crisis and emergency. So it'sbasically rather than calling
911 If you're experiencing amental health issue, you can
call 988. And the idea issupposed to be that someone who
is trained in dealing withmental health crises, answers
the 988 number. Ideally, thatcan connect you to well, they'll
(14:34):
assess you figure out, you know,is this something that requires
an emergency response? Is thissomething that, you know, can be
treated if they can find aclinic appointment for you? Or
try to figure out otherresources that might be
(14:54):
available to you? And that wayyou can get the help that you
need? You need in a timelymanner. Unfortunately, our
federal legislators and all oftheir wisdom did not really fund
90 Day implementation, they justsaid, it's a number, it's going
(15:15):
to be created, and it will nowexist. So today, if you call
988, and jurisdiction one, youmay get a trained mental health
counselor who can help youaccess emergency outpatient
appointments for to meet with atherapist or a doctor can
(15:38):
possibly send you to variouslocations where you might be
able to get services that you'reimmediately needing, dispatch
someone to your location who canhelp you, and help get you to
where you need to go. And thenin jurisdiction two, you might
just get rerouted to your local911, which is, you know, the
(16:02):
more traditional response, ifthey're going to send someone
out, it might be your local firedepartment at your local EMTs,
your local police officers. Andthen those folks will more
likely than not take you to anemergency room or you'll have to
wait to be seen by some sort ofmental health clinician, you
might be placed on aninvoluntary hold right now
(16:24):
varies widely. Nine, and it hasthe power to really improve
crisis care in this country. Andalso, as I'm sure many people
have seen the headlines, there'scurrently a bit of a mental
health pandemic going on in thecountry, especially when it
(16:45):
comes to children's children'smental health. So I think none
of it has the power to really bea fantastic piece of legislation
that changes things in thecountry, but we need to get it
funded. SLN signed on, insupport of a bill put out by a
Representative Carter heinousthat would increase funding for
(17:10):
nine ADA implementations. As apsychiatrist, I can talk about
mental health forever, butspecific to the sibling
experience. Oftentimes we needto call emergency services for
both ourselves and our siblings.
And when that happens, gettingsomeone who is trained and has a
deeper understanding of what youmight be going through or what
(17:32):
your sibling might be goingthrough is crucial. Police
officers do amazing work, buttheir training mostly involves
apprehending criminals notdealing with mental health
issues. And it's frankly unfairthat we have just kind of as a
country said, well, because wedon't have anyone else to do
(17:52):
this, police officers should dothis. And I think, for those
siblings who have had to callfor a mental health crisis, and
we've gotten a police response,it's probably been a little
jarring. So I think one areathat we're really working to
improve is to fund nine in abetter make sure that
communities across the countrycan get the services that they
(18:15):
need. And hopefully that'lltrickle down and help both
ourselves and our siblings whenwe may be experiencing crisis.
Tiffany Banks (18:25):
So I'll add that when I think about the
priorities of siblings and doingthis advocacy work, and what's
important to us right now, thefirst one to kind of mention
that I think about siblingadvocacy in two different ways.
The first way being that weadvocate for ourselves, right?
We as individuals have our ownunique needs, why do we advocate
(18:47):
for changes and reform and FMLAbecause we as human beings also
require need to have our jobsprotected, and hopefully one day
also have access to that paidfamily medical leave, right,
that's advocacy that siblingsare doing on our own behalf. And
then the other type of advocacythat I think that we do, as
(19:07):
siblings is as allies along thesides of our siblings into in
order to ensure that they havethe best life possible, right,
and that they're really beingempowered with that self
determination to make decisionsabout their lives. And so some
of the issues that are reallyimportant to our siblings right
(19:29):
now that we've heard, throughself advocacy organizations and
the arc are things such asmarriage equality, pain, a lot
of people don't know that socialsecurity income has a marriage
penalty. And so, for oursiblings who are interested in
getting married to anotherperson who has a disability,
(19:50):
they will actually make lessmoney if they get legally
married. And so we see a lot ofpeople postponing or just not
even getting married at allbecause Though it doesn't feel
like an option, right, theyalready live paycheck to
paycheck penny to Penny. So tomake less money, right can be
really devastating. The secondthing that our sibs have been
(20:14):
talking about a lot lately ishousing access. We know that the
ATA has been here for quite sometime now, right. But we still
don't necessarily have privateresidences that are accessible.
And when I talk about access, Idon't just mean physical access
of being able to get in and out,but also having houses that are
(20:35):
in good quality neighborhoodsthat have access to other types
of services around them, such asbus stations, emergency medical,
things of that nature, right. Soaccess goes beyond things like
ramps and stairs. So thinkingabout housing access from this
much bigger perspective. Andthen I think the third one that
(21:00):
I wanted to point out are somesome bills around technology
access, right, and thinkingabout the future of disability,
and how we're using technologyand what that really costs,
right. So not everyone hasaccess to high speed internet,
(21:20):
not everyone has access to webcameras, like we're using here
as we're talking, right. And sowe want to make sure that as
we're progressing, thatindividuals with disabilities
have access to the things thatcan also make their life, right,
more independent orinterdependent, right, no one's
(21:41):
fully ever independent. Sopardon my language there, there
are some great federal levelpieces of legislation addressing
all three of those things rightnow. So
Chris Berstler (21:53):
what are the main challenges that siblings
face in advocacy?
Tiffany Banks (21:58):
Well, I think we've already pointed out that
we're not included in thedefinition, right? So just
simply not being seen. Or heard,right, or even like looked at as
a stakeholder, I thinkoftentimes, you know, no one's
stopping to go like, Whoa,there's not a sibling involved
in making this decision. Sothat's an issue of right out of
(22:20):
the gate.
Nina Bihani (22:22):
I think time is, is a very precious commodity. And,
you know, none of us haveenough. Yeah, I think finding
the time to speak up to put youknow, your words on paper or
keyboard, or can make a call toa legislator write a letter,
(22:43):
that all takes time. And itthere's also kind of an
emotional cost to it. As Tiffanymentioned, at the top, we face
unique challenges because of ourunique experiences. And
oftentimes, in order to convincethe people in power to make
(23:03):
changes that will benefit us, wehave to explain our
circumstances, our challenges,our pain, and that can be really
exhausting, both emotionally andphysically. So I think a lot of
people think that if you are anadvocate, you have to show up
(23:26):
every single day, with thisfiery intensity, you have to
channel your inner ErinBrockovich. And that's, that's
just not the case. You can, youknow, you can lend your voice
when you have the the time andthe energy and the emotional
(23:46):
capacity to do so. And if thereare other issues that come up,
and you can't lend your voice,because you don't have that, in
the moment, that's okay, therewill be there lots of us. And,
you know, you're not required toshow up and be front and center
for every single issue. You canpick and choose. And there might
(24:09):
be issues you care deeply about.
But on some days, you just needto take a break from and that's
perfectly okay.
Tiffany Banks (24:16):
Nina, you actually remind me of, I think
one of the biggest barriers thatI wasn't even thinking about
when Chris asked the question orthinking about coming into this,
but siblings, we often have tohold to emotions that are
really, like logicallyincongruent. And then same time,
(24:38):
and we're not often get like,taught how to do that. Right.
And so I think, you know,understanding that your sibling
is somebody who makes youincredibly happy and also is
probably associated with some ofthe hardest times in your life
and someone you've feltresentful about and you The back
(25:01):
and forth and the combinationright of those two extremes is
an thing that I think a lot ofpeople avoid, right. Like as
mental health people, I don'twant to get like too touchy
feely here, but I think a lot ofus don't, don't try and sit with
those two things, right? We wantto reconcile one and then like,
get rid of it and focus on justone emotion and our lives as
(25:22):
siblings have never been thatblack and white. It's always
been in this gray, unknown.
damned if you do damned if youdon't kind of, like position.
And I think that that barrierreally encompasses and shades
like everything that we do.
Nina Bihani (25:46):
Yeah, I definitely agree. And, yeah, I feel like
sometimes, at least for me,there's, you know, it's almost
holding three emotions, becausethere's also, you know, my
parents who have their ownexperiences and their own
(26:07):
struggles, and occasionally turnto me for help. Because we're
family, and that's what we dofor each other. But also to feel
like, you know, you want to takecare of your parents, you want
to lessen their burden, and yousee them getting older. And
(26:29):
dealing with, you know, theirown challenges. You want to help
her sibling you want to, youknow, make life better for them,
you see all of the challengesthat they face, you see how they
navigate a world that it's notat all designed for them. And
then you want to take care ofyourself, you want to live your
own life and want to, you know,fall in love and struggle in
(26:52):
your own career and maybe makesome dumb choices along the way.
Have fun, step away from thefamily that you grew up in, so
that you can be your own person.
So it's definitely a struggleand trying to tell, you know, a
change maker, hey, Congressman,my life has been so complicated,
(27:14):
and this policy that you havethe power to change would really
make an impact on my day to daylife, that can be pretty
emotionally taxing. So I thinkthe biggest thing for me is
making sure that you are makingtime and space to take care of
yourself, and then not feelinglike you need to constantly be
(27:35):
jumping on to everything. Andlending your voice and always
calling people and writingletters you can pick and choose
based on, you know, how muchfeeling you have in the tank, in
a given moment.
Chris Berstler (27:55):
What challenges and or barriers are there to
marginalized communities toadvocating with their brothers
and sisters.
Nina Bihani (28:03):
I think it's more of the same, but then the added
difficulty of being from amarginalized group. I am the
child of immigrants. I'm alesbian. So I am married to
someone who's also a sibling,and also someone of color. And
(28:29):
we, you know, being from amarginalized community, of
course, it's harder to get yourvoice heard. It's harder to get
yourself into the mainstream soto speak, you may have to change
certain aspects of yourself tomake yourself more palatable.
(28:54):
I'm saying that verysarcastically to the, to the
people in power. So you have tokind of go through this process
of making sure that you aresaying things that people are
going to listen to because it'sall about messaging, right, you
(29:14):
have to really hone your messageto make sure that the person who
has the power to make thatchange is going to hear it. And
then at the same time, you haveto face all of the challenges
that come with being part of amarginalized community. And you
also have to recognize that yoursibling belongs to that
marginalized community and theyare going to be even further
(29:36):
misunderstood. We havedefinitely within our
communities seen, you know,diagnosis is often delayed or
missed. For people who belong tomarginalized communities. They
are less likely to get highquality services or be able to
(29:59):
act Have the medical care andtherapeutic care that they need,
they are less likely to haveaccess to adequate housing.
Oftentimes, even things likehaving access to food security
and healthy food, everythingthat you hear about in the news
(30:20):
that you may know from personalexperience all of those
challenges that people inmarginalized communities face,
plus the difficulty of having asibling with a disability plus
the knowledge that thatdefinitely with the disability
is not just marginalized becauseof their disability, but also
because of other factors. Soit's just kind of a bunch of
(30:44):
things being piled on top ofeach other.
Tiffany Banks (30:47):
I can amplify everything that Nina's already
said, I think that it was spoton, right in thinking about the
intersectional identities andhow that impacts, you know, the
work in the barriers, I thinkone of the really important
things is we've alreadymentioned how much time it
takes, right. And so when wethink about people with
(31:09):
intersectional, marginalizedidentities, we really start to
think about who has access tothings and the choice and the
ability to do this kind of work,right? If you are an individual
who's an hourly worker livingbelow the poverty line, you are
likely not going to have thetime to, you know, maybe fly out
(31:29):
to DC and do you know, meetingsand participate in the
disability policy seminar and doall that kind of stuff, right?
And so there's what you haveaccess to drastically changes.
And so, you know, with thatsaid, of course, there's other
ways of people to still getinvolved without doing all those
types of things. Even justtalking to friends and family,
(31:51):
right, and educating andspreading that information and
putting away this informationand disproving that make sure
that you're, you know, smallnetwork of community knows
what's going on. Even that typeof advocacy can be just
completely life changing foranyone and everyone. And so,
(32:12):
always remember that when youare faced with these barriers
and obstacles that you know,what you are able to bring to
the table is still worthwhile,no matter how small.
Nina Bihani (32:21):
I would argue it maybe even more worthwhile
because that intersectionalperspective is going to help you
understand some nuances thatmaybe others who don't have that
perspective, will not be awareof, for
Chris Berstler (32:37):
any beginning advocates listening, what advice
can you share about how to beststart their advocacy journey
with their sibs?
Tiffany Banks (32:44):
Talk to your sib about what's important to them?
Right, like I said, there's twokinds of branches as of sibling
advocacy. And certainly when itcomes to things that directly
impact your SIP their voice, isthe most important voice in that
room. Right. So we're using ourpower and privilege as able
bodied siblings of our lovedones, to be great allies. We
(33:11):
can't do that unless we firststopped and listened to the
actual self advocate.
Nina Bihani (33:17):
Unfortunately, oftentimes, my brother can't
really vocalize or share what hewould want in a specific
situation, his support needs arepretty high. So then we're kind
of put in this position where wehave to guess and we have to
assume, I think as siblings,we're in a unique perspective
where we sometimes watch ourparents treat our sibling like a
(33:41):
little kid, even when they're anadult. And no matter how high or
low someone support needs are,it's important to make sure that
they are, are treated with therespect and the dignity that
they deserve. So I think,honestly, some of my advocacy
(34:02):
stuff started on my own familywith telling my parents Hey,
he's, he's in his 20s. Now, theycan't be doing, he'll be talking
to him like this, that we can'tbe treating him like this. He,
if he wants to wear specificcolor every day, then that's
fine. Why are we fighting him onthis? He's, you know, he's not a
child. So kind of putting thatout there. And I also just
(34:27):
wanted to take a moment to talkabout medical advocacy. If you
are the person who is takingyour sibling to the doctor,
spend some time researchingdoctors find someone who maybe
has some experience working withintellectual disabilities. There
is a new law that makes itpossible for everyone to request
(34:49):
their medical records. So goahead and do that. Make sure
that your doctor is documentingthings correctly. And that also
makes it easier when you have tojump between specialists
specialist, you can just have afile where you can say, well,
this is why the psychiatriststarted my sibling on this
medicine. But then, you know,the neurologists was concerned
(35:13):
about it worsening my siblings,seizure disorder or something of
that nature. And then keeping inmind that when someone with a
disability is hospitalized, theyare entitled to an advocate,
this is an issue that came upduring COVID-19. When hospitals
(35:34):
are limiting visitors, yoursibling is always entitled to an
advocate to help themcommunicate in a medical
setting. There is somethingcalled the Health passport. And
it's kind of a way to log youraceptas health data succinctly
and in an accessible format, sothat you can kind of just give
(35:55):
that to your service medicalteam if they're ever admitted to
a hospital. And then the lastthing I wanted to talk about
was, this is a hard thing tobring up. But it's better to
have open conversations aboutthis talk about end of life
issues. Talk about with yourfamily, if our sibling is in a
(36:16):
situation, where they mightrequire hospice or palliative
care, or, you know, for some ofour siblings, it might be that a
bout of pneumonia could be muchmore life threatening than it
would be for the generalpopulation. So kind of having
that discussion of do we wantour sibling to live on a
(36:37):
ventilator? How long? What our,as a family, what do we want?
And whenever possible, includingyour siblings voice and asking
them now when they're healthy?
And well, what would you want isreally important. And then I
also just wanted to bring up theidea of the letter of intent
form. You can find it online,it's it's talks about how family
(37:01):
members would want futurecaregivers to take care of their
loved one with a disability. Soit's something that's all about
planning for the future. Howwould we want someone to, you
know, take care of things, whatwhat types of things do we want
(37:22):
to make sure are always includedin siblings life, for my
brother, he loves his Bollywoodmusic, totally obsessed with it.
I, you know, eat long after I'mgone and my parents are gone, I
would want to make sure that hiscaregivers are still giving him
access to his music. Because asthe youngest member of our
(37:42):
family, that's a reality that,you know, he might be around the
longest. And I know that that'ssomething that will always bring
Him joy. And I also know thatsomeone who doesn't know him may
just not even know whatBollywood music is, and may not
be able to provide it with him,just due to a lack of knowledge
about who he is.
Tiffany Banks (38:05):
I just wanted to add anyone who's starting their
policy and advocacy journey, whodoesn't have that background and
understanding the history ofdisability policy, could be
really important to take a lookat some of the resources out
there. So for example, wedefinitely recommend the policy,
(38:26):
the Partners in Policymakingprogram, I just wrote about it
in our June 2023 newsletter.
That is an excellent source ofinformation for anyone in the
disability community, who's astakeholder who wants to get
involved, right, that goes overthe history of what's happened
thus far, as well ashighlighting all of those
(38:47):
current issues and, andsupporting educating individuals
how to navigate these systems.
At the SLN. We do also have somepast I think podcasts and
webinars and resources that talkabout some of the basic tips
that Nina and I have given forindividuals who are starting to,
(39:08):
you know, look at bills for thefirst time that talks about how
to read them, what types ofthings to look for. And so
taking a look at some of thatinformation, because it is
important when you are limitedon time to make sure that you
are identifying the place whereyou're going to have the biggest
impact. And so, taking a look atsome of those resources can be
(39:28):
really helpful.
Chris Berstler (39:30):
What policy and advocacy resources would you
recommend to siblings?
If you have not heard of thedisability policy seminar that
is held in DC every year that isa really great resource. Whether
you are a first timer or a youknow, life long professional
advocate here, right. It is anopportunity one to hear lots of
(39:57):
amazing speakers in our network.
To talk about the currentissues, but also each state will
have opportunities to speak withtheir legislators and let or
legislative aides to practicesome giving those pitches and
talking about the issues. And soit's a really unique opportunity
(40:19):
not just to learn, but toactually put it into practice,
and do some advocacy work withthe support and assistance of
some of those great, amazingprofessionals and alongside self
advocates. So that is an amazingevent that is held every year,
definitely recommend.
Nina Bihani (40:40):
If you can't attend that event, or at least not this
year, the Arc has some wonderfulonline resources. And not to
toot our own horn for a minute,the SLN puts out a policy and
advocacy newsletter, about everymonth, we've definitely missed a
month. So sorry about that. Butwe try to pull together
(41:04):
resources from multiple groups,and kind of distill things as
succinctly as we can for subs.
So even just going through someof our older newsletters, and
looking at resources that mightbe helpful to things that you
and your family and your siblingare dealing with.
Chris Berstler (41:24):
What other words of advice might you have to
share with any sibling advocateslistening?
Tiffany Banks (41:30):
Your lived experience is expertise, you do
not need a degree from auniversity, you do not need, you
know, any special training toknow that what you have lived is
real, and is believable and isworthwhile. And that it is
(41:51):
important and you know, canreally make a difference by
sharing that story.
Nina Bihani (41:55):
Yes, exactly your voice matters, your your
thoughts, your ideas, yourexperiences, that all matter,
talk, talk about them, talk topeople in power, about your
ideas about your needs, aboutyour wants, whether that's you
know, someone of authority atyour sips group home or school
(42:18):
or in the doctor's office, orwhether that's your local city
council, your state government,your federal government, your
voice matters. And beyond that,recognizing that you're, you
have the ability to amplify yoursiblings voice. So sometimes it
(42:39):
might be not even about youtalking but about you making
sure that your sibling gets tobe heard. But beyond that, I
think also recognizing thatthere are 1000s, probably of
other siblings out there who aredealing with the issues that
you're dealing with. SLN is hereto help amplify our voices as a
(42:59):
group, and also to providesupport to each other. So when
you were struggling, we're herefor you. So please remember,
your voice matters. Yourthoughts matter. Your ideas
matter. And the world deservesto hear them. If you listen to
this podcast, and you want totalk to Tiffany and I directly
(43:20):
about something, anything,please reach out, email us.
Tiffany Banks (43:25):
We're here to take, I think you know other
thoughts too. Sometimes I hearfrom siblings who have a piece
of policy that is important tothem that month and they reach
out to me and asked me tohighlight it in the upcoming
newsletter. totally happy to doso. We are not experts on, you
know, every piece of policy inevery state across the entire
(43:48):
United States. So if there'ssomething that is important to
you feel free to throw it ourway and we can absolutely look
into highlighting it andincluding it in our next
newsletter.
Chris Berstler (44:00):
Awesome. Thank you both so much for joining us
today and talking about policyand advocacy. any resources that
Nina and Tiffany have mentionedduring the podcast you can find
in the podcast descriptionbelow. We look forward to
advocating with you thank youboth so much.
Nina Bihani (44:17):
Thank you.
Chris Berstler (44:20):
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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