December 4, 2023 • 26 mins
Certified Sexuality Educator, Terri Couwenhoven, discusses barriers for our siblings with disabilities getting sex education and gives us some great resources and advice to help us support our siblings who are seeking romance.
Access the transcript of this episode here.
Acceda a la transcripción en español.
"Listening and helping your sib feel heard are really important" —Terri Couwenhoven
Resources in this episode:
- Terri Couwenhoven MS, CSE
- Elevatus trainings
- Diversities in sexuality handouts
- Boyfriends & Girlfriends: A Guide to Dating for People with Disabilities
- Circles: Intimacy and Relationships
- Circles app
- National Council on Independent Living Video Series
- Amaze.org
- real-talk.org
- Adult Down Syndrome Center resource page
- Making Authentic Friends App
- Special Bridge App
- Sex Talk for Self-Advocates Webinar Series
- SLN Self-Advocates Resources page
- Dave Hingsburger
Mark as Played
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 Leadership Networkis a national nonprofit whose
mission is to provide siblingsof individuals with disabilities
the information, support andtools to advocate with their
brothers and sisters and topromote the issue is important
to us and our entire families.
Thank you for joining us foranother episode of the sibling
(00:25):
Leadership Network Podcast.
Today we will be talking aboutsexuality, disability and
sibling support. I'm joinedtoday by certified sexuality
educator Terry Colin joven.
Terry, thank you so much forjoining us today. Well, good to
be here. Could you just startoff by telling us a little bit
about yourself, your historyworking in the disability and
sex education communities, andwhat makes you so passionate
(00:48):
about your work?
Terri Couwenhoven (00:51):
Well, my whole professional life, I have
been a sexuality educator. Istarted out at Planned
Parenthood, I worked there formany, many years. And that is a
you know, very common trainingground for people in the
sexuality professions. And thenI had just started to do some
(01:13):
programming that was unique andspecific to people with
intellectual disabilities. Atthe time, there was a lot of
movement from institutionsdeinstitutionalization was going
on, and people were living ingroup homes. And I think people
were understanding that thattransition from institutions to
group homes, required people tohave some good solid
(01:37):
information, if they were goingto be in the community, it was a
different, you know, differentenvironments. So. So I was doing
a lot of programming for peoplewith intellectual disabilities.
And then, in 1989, my firstchild with my first child was
born. And she happened to haveDown syndrome. So not something
we knew. But it was one of thosemoments where you just kind of
(02:02):
say, well, I guess this is thisis what I was meant to do,
right? So I already hadrecognized there was a huge need
for help and support in thisarea for people with
intellectual disabilities, forparents, for professionals. So I
started specializing, andworking exclusively with that
(02:25):
population. So that's how it allstarted.
Chris Berstler (02:29):
So what barriers exist within the disability
community and society at largeto individuals with disabilities
advocating for sex education?
Terri Couwenhoven (02:39):
Well, you know, we have come a long way.
But we there still are issues.
attitudes, I think, from thegeneral community, and myths.
You know, that belief thatpeople with intellectual
disabilities are not sexualhuman beings, I think we still
battle that often on. Andusually, you know, usually, it's
(03:03):
because these individuals whoare supporting people or
parents, they're just, they'rejust not aware, or they haven't
had experience. And we know,there's a why there's a big
diversity in people withintellectual disability. So this
can be very individualized, butthe attitudes are still there.
(03:23):
So so that myth that people, youknow, are asexual, or the other
myth, you know, those thosepeople with intellectual
disabilities are, you know,their urges, and these are words
people have used with me, I'mnot just making these up. But
their urges are somehow biggerand different than the general
population. So, you know, andmost of these attitudes, I
(03:48):
think, come from people who justdon't have a lot of experience
or are observing things thataren't what they seem. So, so
that's certainly a big barrier.
We also know from the literaturethat staff who are supporting
people with intellectualdisabilities, you know, often
(04:11):
understand that people haverights, but they're just not
sure how to support them. And Ithink that's true for parents
too. They're, you know, they're,they know that their kids are
sexual human beings, but thenthings happen, and they're a
little stuck, they get stuck,right. So yeah, so we're still
(04:32):
kind of dealing with thoseissues in different ways, shapes
or form, but when I look backand see how things have moved
forward, we have made gains. Youknow, as far as resources, you
know, in the olden days, I wasmaking up my own stuff, and
there just wasn't you know,Winifred Kempton was the only
(04:52):
one who had developed a slideseries a really comprehensive
slide series that was prettygraphic on sexuality, but it
viously in differentcommunities, that wasn't always
acceptable. So now we have manymore resources. I think that's
that's one of the gains andthere's a lot more people who
are doing training in the areasof sexuality. So there's,
(05:13):
there's, there's moreindividuals out there who are
interested and active andproviding sexuality education,
which is great. The more thebetter.
Chris Berstler (05:24):
Are there additional barriers that
individuals with disabilities inthe bipoc and or other
intersectional identitycommunities face? And what
advice or resources can youoffer to help them navigate
these barriers?
Terri Couwenhoven (05:38):
Yeah, that's, that's a really good question, I
think depends, you know, youraccess to resources and how
people address sexuality reallydepends on the community you're
living, living in. And we knowthat, um, you know, they're the,
the ableism, I think, is moreprominent and dominant in some
(06:01):
in some communities. And, youknow, when when there is racism
and ableism, we know thatquality of life outcomes are
diminished. So absolutely, Ithink sexuality sort of moves
down to less of a priority whenpeople are living in less
(06:23):
fortunate communities. When wetalk about diverse identities
and sexuality, you know, and we,we know, sexuality is diverse.
And we know it's also diverseamong the population, and people
have intellectual disabilities.
But when you start thinkingabout the general population,
and how much support peopleneed, when they're struggling,
(06:44):
and trying to move through life,with these diverse sexual
identities, we know that peoplewith intellectual disabilities
don't always have the sameaccess to support and in my
opinion, they need they needmore support than the general
population. So So yeah, that's,that's tough, um, elevate us as
(07:05):
a national group. It's an oldcolleague of mine from Planned
Parenthood, who does a lot ofmore systemic training for
organizations and agencies, andthey have a really nice
curriculum, but they also have areally nice website with
resources.
Chris Berstler (07:26):
For sibs, sexuality can be a real cringe
topic, what advice do you havefor any siblings out there
listening who want to help theirsibs with disabilities advocate
for their sex education?
Terri Couwenhoven (07:39):
there can be a wide range of sexuality issues
for any individual withintellectual disabilities. And I
guess my my best advice would beto just listen and pay
attention. And sibs are great atthat. So you, you know, sibs
are, can be a conduit, between,you know, what they're seeing
(08:01):
with their parent, and you'reobserving all of that, and I
think they can fill in the gaps.
We know that. So listen, we knowlistening and acknowledging and
feeling heard, are a reallyimportant part of supporting
people in the area of sexuality.
So you know, don't, don'tunderestimate that listening,
(08:23):
and helping your sub feel heard,really important, and then
meeting them where they're at, Imean, different people are going
to be in different places. So,you know, you may have a sip,
who is, you know, reallyinterested in dating, you know,
they might express that they,you know, they want to date, but
they just don't know how to goabout doing that. So one of the
(08:46):
things in my professional lifethat I wanted to do was make
sure that people withintellectual disabilities had
access to resources that werefor them. So, you know, in my
world, of supporting people, itwas really common, I was seeing
that it was really common forthem to want to date and that,
you know, they have the sameneeds and desires and that we
(09:09):
all have, it's just that they,they move into that world with
less information. So I thinkthat's really important to
remember. I wrote the datingbook, specifically for people
with intellectual disabilities,as a way to help them understand
what are some really importantsteps in the dating process? So
you know, finding someone, forexample, is a huge challenge for
(09:34):
the people that I work with.
It's really tough, and it'sreally easy for us to say, well,
everybody struggles with findingsomeone but there's a lot more
barriers, I think, for peoplewith intellectual disabilities.
You know, they have to deal withthe attitudes of the people
around them. They have to youknow, they in order to find
someone, they have to have a anactive social life and that in
(09:55):
itself, is it Challenge, or alot of the people that I work
with, I mean, they come to thedating workshop thinking I'm
gonna find them a date, which,you know, isn't that isn't what
the dating workshop is about.
But, um, so yeah, there's, youknow, access issues for a lot of
(10:16):
the people that I work with. Solistening, meeting them where
they're at, and then being thatconduit between, you know, the
parent, and you know, what the,what you see the parent saying,
and what's what's reality. Ithink sometimes parents are just
overwhelmed and can't always beeverything for everybody. I can
(10:38):
speak, I can say that as aparent,
Chris Berstler (10:42):
I can back you up the same things true, as a
sib.
Terri Couwenhoven (10:47):
Yeah, yeah.
And that's the other challenge,right? Because they're not
usually driving. They're, youknow, they require other people
to support them in making thishappen. And, you know, one of
the questions you asked me,Chris, was, how can we? How can
we support our sibs when we haveour own lives? Right. And so one
(11:07):
of the things we talk about, andI talk with parents about this,
too, is just building yournetwork. Because it can't all be
on you. So what does thatnetwork look like? And I think
we have done a, we're improving,as far as the ways that we're
providing long term support forpeople with intellectual
(11:30):
disabilities and integratingsexuality into those support
mechanisms. So I think it's, Ithink that's the other thing
that's gotten better. Over time,we talked about resources, but I
think support for people withintellectual disabilities is
getting better to
Chris Berstler (11:49):
Tell us a little bit about what healthy dating
looks like for our sibs withdisabilities, and what resources
or advice can you offer to selfadvocates and their families
around dating and Dave, datingservices or apps?
Terri Couwenhoven (12:04):
Well, healthy dating for sips looks just like
it does for all of us. I mean,we we want people to be in
relationships that arerespectful, and safe. And you
know, boundaries are respectedand their shared power. And we
want we want all those thingsfor everybody. So when we think
(12:26):
about people within, again, thatsame needs, but less
information. So those are thingsthat we often have to teach
about. One of the most popularquestions when I'm working with
parents is, you know, when welook at the general population,
the most, the most popular wayto find a partner is through
(12:46):
online dating or, you know,apps. When we look at how that
might work for people withintellectual disabilities,
there's been websites, there'sbeen apps that sort of come and
go, come and go, come and go.
And so I think, and sometimesthey're created by sibs. So
which is which is great, but Ithink they don't realize how
(13:08):
hard it's going to be to kind ofkeep those things up, and then
they just go away, which isunfortunate. So unfortunately,
there's not as many, there's notas much access to those same
kinds of ways to find a partner,as there is in the general
population, which isunfortunate. So if you are
connected, if your SIP isconnected to well connected to
(13:32):
your community, and you haveaccess to organizations that are
supporting people withintellectual disabilities, I
think we're doing a much betterjob at classes and programs that
can support people in not onlylearning about dating, but you
(13:52):
know, finding people. You know,I always say to families, you in
order for them to find someoneto date, they have to have an
active social life. And so thatis one of the roles that
organizations I mean, thatshouldn't be on sibs. Right?
That is an that is a role oforganizations in the community.
And I think we're doing a muchbetter job at making sure people
(14:15):
are active and supported andhave a good social life. So
that's a really important firststep. You know, if you're, if
you're interested in helpingyour sibling learn, let's say,
let's say they're not gettingthe concept of mutual interest,
which is sort of step two in mydating process, right? The first
(14:36):
step is finding someone. Thesecond step is really seeing if
that person is interested. Youmight be interested, but they
might not feel the same way. Andthat's a really common I find
that for a lot of for somepeople with intellectual
disabilities. There's thisassumption that if they really
really liked someone that it'smutual, it's automatically
mutual. So that filler, thatflirting piece is something that
(15:00):
they've never been taught orthey don't understand. And so we
have to, you know, kind of teachthat skill. But if there's a
concept that you're you'rerecognizing they don't
understand or there's a gap ininformation there are the
National Council on IndependentLiving, has a video series are
(15:21):
really nicely done video seriesby people with intellectual
disabilities for people withintellectual disabilities. And
there is one of the videos Ishow a lot in my classes, which
is, you know, what happens ifyou really like someone, but
they don't like you back? Isthere something wrong with you?
No, I, you know, kind ofaddressing those feelings. And
(15:42):
so, um, and the people I workwith really do like videos, I
think that's, as far as teachingstrategies, it's a visual, they
understand it, it's just, it's,it's easy. Sometimes I use
Amazon amazed.org is anotherlittle short, animated videos of
(16:03):
a whole, they have tons and tonsof videos, and they're designed
not for people with intellectualdisabilities. But sometimes I do
use them they have a reallyexcellent one on safety in the
internet, and, you know, porn,and kind of messages related to
porn that that we need to thinkabout. And then there's another
(16:25):
agency out of Canada, that hasdone a series of videos in its
real talk.org www dot real talk,real hyphen talk.org. So people
with intellectual disabilities,kind of talking about a whole
variety of issues related tosexuality. So those are some
(16:49):
resources, those are some go toresources that I use all the
time. Another one of my favoriteresources is the adult Down
Syndrome clinic. And Illinoishas a great website, it's if you
go to the internet, and justtype in adult Down Syndrome
(17:10):
center resource page, you'll getyou'll get you'll get a list of
there's professional resources,Parent Resources and resources
specifically for people withDown syndrome. So and you know,
if you have a sibling with anykind of intellectual disability,
though, they'll benefit fromthat. But they've done some
(17:33):
really nice concrete succincthandouts, low literacy handouts
for people to you know how tobreak up what what a healthy
relationship looks like. Sothose that's a, I sometimes use
those in my workshops as well.
(17:53):
Katie Frank, who's an OT there,has done some really nice, has
created some really niceresources. So that's another
option.
Chris Berstler (18:03):
Tell us a little bit about boundaries and
boundary confusion.
Terri Couwenhoven (18:09):
Wow, okay. I have a whole workshop on this.
a whole lot of reasons why wesee boundary confusion and
people with intellectualdisabilities. And, you know, one
Biggie and I think we have a lotof work to do in this areas,
when we that whole idea ofinfantile zation, you know,
(18:32):
thinking about people withintellectual disabilities as
perpetual children, we, youknow, the, most of the people
who believe this, don't do it onpurpose, but they just, it's
just there, and they don't havea lot of experience with people.
And so, you know, and I laugh,because I think my daughter
(18:53):
deals with this on a daily Ithink all of our sibs deal with
us on a daily basis, and wedon't always see it, but we were
at Target the other day. And somy daughter is 34. And she was
buying a DVD and we got in line.
And this cute old woman waschecking us out. And she looked
at Anna and she said, do want asticker. She pulled out this
(19:15):
little Disney sticker. And, andI kind of looked at me and you
know, we kind of have a script.
She has a practice grip that sheuses. And so I you know, I just
kind of shrugged my shoulders.
And she looked at the lady, shegoes, I'm 34 so, and I'm sure
the lady felt bad, but it wasthat, you know, that sort of
(19:37):
ongoing belief that people areyounger than they actually are.
So, when we believe that whenpeople have that in their heads,
it does affect the how we treatpeople and boundaries. So, you
know, in school age populationof people with intellectual
disabilities, you know, it mightlook like the teacher is, you
(20:00):
know, the hugging piece, theydon't deal with any of their
other students. But they, youknow, it sort of lingers into
middle school, not usually inhigh school. But so some of
those behaviors when we'remodeling that, it creates some
confusion about boundaries forour bar sips with intellectual
(20:21):
disabilities, right? In otherwords, they're experiencing this
modeled these model differencesin how we interact with people,
and it goes on for longerperiods of time. Right. So
there's, there's some confusionabout that. I think the other
piece is, and we know this nowis there's a model
(20:42):
desensitization. So forindividuals, for example, who
who need more help and supportwith intimate have intimate care
needs. There's people kind ofcoming in and out of their
physical spaces, more often,there's lots more people, and
they're doing it more often thanyou were I would experience
(21:03):
that. So that model dissentsthat desensitization is
something that carries over.
They do this to me, therefore, Ido this to other people, right?
It's modeled and it's engravedbecomes ingrained. And so
boundary instruction, you know,actually has to be taught. I
(21:24):
think the other piece isrelationship confusion. So, I
know a lot of people, I workwith a lot of people and
everybody's their friend, right?
Everybody's their friend.
There's no role distinction, ordifferentiation between, let's
say, a paid helper, and, youknow, a family member. And so
(21:44):
you just sort of treat everybodythe same. And so, yeah, there's
there's a lot of things that Ithink contribute to that
boundary confusion.
Chris Berstler (21:54):
Are there any resources that you can point us
to, as far as that's concerned?
Terri Couwenhoven (21:59):
Um, well, the most, I think the most popular
resource is the circlescurriculum, which is a visual
way to think about levels ofrelationships in a person's
life. And we can, and now theyhave a brand new version for
elementary school age. So we canstart this a lot earlier. But I
(22:22):
think, you know, it starts with,you know, my body is in the
middle. And then it's thepremise of the curriculum is,
you know, the less I know aperson, the less I talked to
touch and trust. So it's sort ofit builds on that concept. So
that's a really popular one forteaching about boundaries. The
(22:46):
other resource I mentioned, theadult Down Syndrome center does
have a little video on, youknow, you know, my, this is how
I touch paid helpers. And youknow, they're doing a high five.
And it's a very succinct, youknow, sometimes when people have
too many options is too hard,depending on the level of
(23:10):
intellectual disability. So, youknow, concrete, clear rules
sometimes work better forpeople. So they have a little
video on on boundaries as well.
Chris Berstler (23:21):
What is the likelihood that my sibling could
get an STD and how can I helpprotect them?
Terri Couwenhoven (23:28):
If they're sexually active, and they're
having unprotected vaginal sexbags and Pinoy, flat vaginal sex
or anal sex? They're at risk. Sothe, you know, as far as STD,
STI prefer vention. The onlyoptions we have are either
abstinence or condom use. Justlike for the general population,
(23:51):
so there is a video on that, onthat link. I gave you the
National Center Council onIndependent Living, they do have
a video on how to use a condom,how somebody gets pregnant.
Because that's also a reallycommon question that people
have, in order to understandbirth control and prevention and
(24:15):
protection. You kind of have toknow how somebody becomes
pregnant. So So yeah, condomuse. So there's a video on that.
Chris Berstler (24:26):
Lastly, in your opinion, how can we as siblings
do a good job of supporting oursibs love life, while balancing
our own lives?
Terri Couwenhoven (24:35):
We talked about kind of meeting yourself
where they're at and noteverybody wants to be in a
dating relationship and havesex. Okay, there's a there's a
wide range. But I think, youknow, David hangs Burr was a
very famous he's no longer withus, but he was a very famous
behaviorist and sexualityeducator professional out of
(24:58):
Canada. One of the one of hisfavorite quotes that I really
like is that, you know, need,the need for intimacy is far
greater than the need for sex.
And I think for a lot of thepeople I'm working with, they
just they do want and need that,you know, they're human, they
have the same needs that wehave. They want those human
connections, meaningfulrelationships. And so for
(25:21):
different people that that canmean different things. But we
did talk about how you how youcan support your serve. And, you
know, looking at that networkand understanding that network
of how you can get that support,so you're not the only one
providing that you're the onlyyou're not the only one doing
(25:46):
the work. I'll call it workbecause it is work.
Chris Berstler (25:53):
Yes, it is.
Terry, thank you so much forspeaking with us today. Any
resources that Terry mentionedtoday, you can find in the
description below. Terry, thankyou so much. It's been a
pleasure.
Terri Couwenhoven (26:09):
Thank you for having me.
Chris Berstler (26:11):
Find resources, tools and information about the
sibling experience on siblingleadership dot for the sibling
Leadership Network is anonprofit, and we rely on
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homepage and contribute to theever growing sibling movement.
Welcome to the sibling Leadership Network
podcast.
The sibling Leadership Networkis a national nonprofit whose
mission is to provide siblingsof individuals with disabilities
the information, support andtools to advocate with their
brothers and sisters and topromote the issue is important
to us and our entire families.
Thank you for joining us foranother episode of the sibling
(00:25):
Leadership Network Podcast.
Today we will be talking aboutsexuality, disability and
sibling support. I'm joinedtoday by certified sexuality
educator Terry Colin joven.
Terry, thank you so much forjoining us today. Well, good to
be here. Could you just startoff by telling us a little bit
about yourself, your historyworking in the disability and
sex education communities, andwhat makes you so passionate
(00:48):
about your work?
Terri Couwenhoven (00:51):
Well, my whole professional life, I have
been a sexuality educator. Istarted out at Planned
Parenthood, I worked there formany, many years. And that is a
you know, very common trainingground for people in the
sexuality professions. And thenI had just started to do some
(01:13):
programming that was unique andspecific to people with
intellectual disabilities. Atthe time, there was a lot of
movement from institutionsdeinstitutionalization was going
on, and people were living ingroup homes. And I think people
were understanding that thattransition from institutions to
group homes, required people tohave some good solid
(01:37):
information, if they were goingto be in the community, it was a
different, you know, differentenvironments. So. So I was doing
a lot of programming for peoplewith intellectual disabilities.
And then, in 1989, my firstchild with my first child was
born. And she happened to haveDown syndrome. So not something
we knew. But it was one of thosemoments where you just kind of
(02:02):
say, well, I guess this is thisis what I was meant to do,
right? So I already hadrecognized there was a huge need
for help and support in thisarea for people with
intellectual disabilities, forparents, for professionals. So I
started specializing, andworking exclusively with that
(02:25):
population. So that's how it allstarted.
Chris Berstler (02:29):
So what barriers exist within the disability
community and society at largeto individuals with disabilities
advocating for sex education?
Terri Couwenhoven (02:39):
Well, you know, we have come a long way.
But we there still are issues.
attitudes, I think, from thegeneral community, and myths.
You know, that belief thatpeople with intellectual
disabilities are not sexualhuman beings, I think we still
battle that often on. Andusually, you know, usually, it's
(03:03):
because these individuals whoare supporting people or
parents, they're just, they'rejust not aware, or they haven't
had experience. And we know,there's a why there's a big
diversity in people withintellectual disability. So this
can be very individualized, butthe attitudes are still there.
(03:23):
So so that myth that people, youknow, are asexual, or the other
myth, you know, those thosepeople with intellectual
disabilities are, you know,their urges, and these are words
people have used with me, I'mnot just making these up. But
their urges are somehow biggerand different than the general
population. So, you know, andmost of these attitudes, I
(03:48):
think, come from people who justdon't have a lot of experience
or are observing things thataren't what they seem. So, so
that's certainly a big barrier.
We also know from the literaturethat staff who are supporting
people with intellectualdisabilities, you know, often
(04:11):
understand that people haverights, but they're just not
sure how to support them. And Ithink that's true for parents
too. They're, you know, they're,they know that their kids are
sexual human beings, but thenthings happen, and they're a
little stuck, they get stuck,right. So yeah, so we're still
(04:32):
kind of dealing with thoseissues in different ways, shapes
or form, but when I look backand see how things have moved
forward, we have made gains. Youknow, as far as resources, you
know, in the olden days, I wasmaking up my own stuff, and
there just wasn't you know,Winifred Kempton was the only
(04:52):
one who had developed a slideseries a really comprehensive
slide series that was prettygraphic on sexuality, but it
viously in differentcommunities, that wasn't always
acceptable. So now we have manymore resources. I think that's
that's one of the gains andthere's a lot more people who
are doing training in the areasof sexuality. So there's,
(05:13):
there's, there's moreindividuals out there who are
interested and active andproviding sexuality education,
which is great. The more thebetter.
Chris Berstler (05:24):
Are there additional barriers that
individuals with disabilities inthe bipoc and or other
intersectional identitycommunities face? And what
advice or resources can youoffer to help them navigate
these barriers?
Terri Couwenhoven (05:38):
Yeah, that's, that's a really good question, I
think depends, you know, youraccess to resources and how
people address sexuality reallydepends on the community you're
living, living in. And we knowthat, um, you know, they're the,
the ableism, I think, is moreprominent and dominant in some
(06:01):
in some communities. And, youknow, when when there is racism
and ableism, we know thatquality of life outcomes are
diminished. So absolutely, Ithink sexuality sort of moves
down to less of a priority whenpeople are living in less
(06:23):
fortunate communities. When wetalk about diverse identities
and sexuality, you know, and we,we know, sexuality is diverse.
And we know it's also diverseamong the population, and people
have intellectual disabilities.
But when you start thinkingabout the general population,
and how much support peopleneed, when they're struggling,
(06:44):
and trying to move through life,with these diverse sexual
identities, we know that peoplewith intellectual disabilities
don't always have the sameaccess to support and in my
opinion, they need they needmore support than the general
population. So So yeah, that's,that's tough, um, elevate us as
(07:05):
a national group. It's an oldcolleague of mine from Planned
Parenthood, who does a lot ofmore systemic training for
organizations and agencies, andthey have a really nice
curriculum, but they also have areally nice website with
resources.
Chris Berstler (07:26):
For sibs, sexuality can be a real cringe
topic, what advice do you havefor any siblings out there
listening who want to help theirsibs with disabilities advocate
for their sex education?
Terri Couwenhoven (07:39):
there can be a wide range of sexuality issues
for any individual withintellectual disabilities. And I
guess my my best advice would beto just listen and pay
attention. And sibs are great atthat. So you, you know, sibs
are, can be a conduit, between,you know, what they're seeing
(08:01):
with their parent, and you'reobserving all of that, and I
think they can fill in the gaps.
We know that. So listen, we knowlistening and acknowledging and
feeling heard, are a reallyimportant part of supporting
people in the area of sexuality.
So you know, don't, don'tunderestimate that listening,
(08:23):
and helping your sub feel heard,really important, and then
meeting them where they're at, Imean, different people are going
to be in different places. So,you know, you may have a sip,
who is, you know, reallyinterested in dating, you know,
they might express that they,you know, they want to date, but
they just don't know how to goabout doing that. So one of the
(08:46):
things in my professional lifethat I wanted to do was make
sure that people withintellectual disabilities had
access to resources that werefor them. So, you know, in my
world, of supporting people, itwas really common, I was seeing
that it was really common forthem to want to date and that,
you know, they have the sameneeds and desires and that we
(09:09):
all have, it's just that they,they move into that world with
less information. So I thinkthat's really important to
remember. I wrote the datingbook, specifically for people
with intellectual disabilities,as a way to help them understand
what are some really importantsteps in the dating process? So
you know, finding someone, forexample, is a huge challenge for
(09:34):
the people that I work with.
It's really tough, and it'sreally easy for us to say, well,
everybody struggles with findingsomeone but there's a lot more
barriers, I think, for peoplewith intellectual disabilities.
You know, they have to deal withthe attitudes of the people
around them. They have to youknow, they in order to find
someone, they have to have a anactive social life and that in
(09:55):
itself, is it Challenge, or alot of the people that I work
with, I mean, they come to thedating workshop thinking I'm
gonna find them a date, which,you know, isn't that isn't what
the dating workshop is about.
But, um, so yeah, there's, youknow, access issues for a lot of
(10:16):
the people that I work with. Solistening, meeting them where
they're at, and then being thatconduit between, you know, the
parent, and you know, what the,what you see the parent saying,
and what's what's reality. Ithink sometimes parents are just
overwhelmed and can't always beeverything for everybody. I can
(10:38):
speak, I can say that as aparent,
Chris Berstler (10:42):
I can back you up the same things true, as a
sib.
Terri Couwenhoven (10:47):
Yeah, yeah.
And that's the other challenge,right? Because they're not
usually driving. They're, youknow, they require other people
to support them in making thishappen. And, you know, one of
the questions you asked me,Chris, was, how can we? How can
we support our sibs when we haveour own lives? Right. And so one
(11:07):
of the things we talk about, andI talk with parents about this,
too, is just building yournetwork. Because it can't all be
on you. So what does thatnetwork look like? And I think
we have done a, we're improving,as far as the ways that we're
providing long term support forpeople with intellectual
(11:30):
disabilities and integratingsexuality into those support
mechanisms. So I think it's, Ithink that's the other thing
that's gotten better. Over time,we talked about resources, but I
think support for people withintellectual disabilities is
getting better to
Chris Berstler (11:49):
Tell us a little bit about what healthy dating
looks like for our sibs withdisabilities, and what resources
or advice can you offer to selfadvocates and their families
around dating and Dave, datingservices or apps?
Terri Couwenhoven (12:04):
Well, healthy dating for sips looks just like
it does for all of us. I mean,we we want people to be in
relationships that arerespectful, and safe. And you
know, boundaries are respectedand their shared power. And we
want we want all those thingsfor everybody. So when we think
(12:26):
about people within, again, thatsame needs, but less
information. So those are thingsthat we often have to teach
about. One of the most popularquestions when I'm working with
parents is, you know, when welook at the general population,
the most, the most popular wayto find a partner is through
(12:46):
online dating or, you know,apps. When we look at how that
might work for people withintellectual disabilities,
there's been websites, there'sbeen apps that sort of come and
go, come and go, come and go.
And so I think, and sometimesthey're created by sibs. So
which is which is great, but Ithink they don't realize how
(13:08):
hard it's going to be to kind ofkeep those things up, and then
they just go away, which isunfortunate. So unfortunately,
there's not as many, there's notas much access to those same
kinds of ways to find a partner,as there is in the general
population, which isunfortunate. So if you are
connected, if your SIP isconnected to well connected to
(13:32):
your community, and you haveaccess to organizations that are
supporting people withintellectual disabilities, I
think we're doing a much betterjob at classes and programs that
can support people in not onlylearning about dating, but you
(13:52):
know, finding people. You know,I always say to families, you in
order for them to find someoneto date, they have to have an
active social life. And so thatis one of the roles that
organizations I mean, thatshouldn't be on sibs. Right?
That is an that is a role oforganizations in the community.
And I think we're doing a muchbetter job at making sure people
(14:15):
are active and supported andhave a good social life. So
that's a really important firststep. You know, if you're, if
you're interested in helpingyour sibling learn, let's say,
let's say they're not gettingthe concept of mutual interest,
which is sort of step two in mydating process, right? The first
(14:36):
step is finding someone. Thesecond step is really seeing if
that person is interested. Youmight be interested, but they
might not feel the same way. Andthat's a really common I find
that for a lot of for somepeople with intellectual
disabilities. There's thisassumption that if they really
really liked someone that it'smutual, it's automatically
mutual. So that filler, thatflirting piece is something that
(15:00):
they've never been taught orthey don't understand. And so we
have to, you know, kind of teachthat skill. But if there's a
concept that you're you'rerecognizing they don't
understand or there's a gap ininformation there are the
National Council on IndependentLiving, has a video series are
(15:21):
really nicely done video seriesby people with intellectual
disabilities for people withintellectual disabilities. And
there is one of the videos Ishow a lot in my classes, which
is, you know, what happens ifyou really like someone, but
they don't like you back? Isthere something wrong with you?
No, I, you know, kind ofaddressing those feelings. And
(15:42):
so, um, and the people I workwith really do like videos, I
think that's, as far as teachingstrategies, it's a visual, they
understand it, it's just, it's,it's easy. Sometimes I use
Amazon amazed.org is anotherlittle short, animated videos of
(16:03):
a whole, they have tons and tonsof videos, and they're designed
not for people with intellectualdisabilities. But sometimes I do
use them they have a reallyexcellent one on safety in the
internet, and, you know, porn,and kind of messages related to
porn that that we need to thinkabout. And then there's another
(16:25):
agency out of Canada, that hasdone a series of videos in its
real talk.org www dot real talk,real hyphen talk.org. So people
with intellectual disabilities,kind of talking about a whole
variety of issues related tosexuality. So those are some
(16:49):
resources, those are some go toresources that I use all the
time. Another one of my favoriteresources is the adult Down
Syndrome clinic. And Illinoishas a great website, it's if you
go to the internet, and justtype in adult Down Syndrome
(17:10):
center resource page, you'll getyou'll get you'll get a list of
there's professional resources,Parent Resources and resources
specifically for people withDown syndrome. So and you know,
if you have a sibling with anykind of intellectual disability,
though, they'll benefit fromthat. But they've done some
(17:33):
really nice concrete succincthandouts, low literacy handouts
for people to you know how tobreak up what what a healthy
relationship looks like. Sothose that's a, I sometimes use
those in my workshops as well.
(17:53):
Katie Frank, who's an OT there,has done some really nice, has
created some really niceresources. So that's another
option.
Chris Berstler (18:03):
Tell us a little bit about boundaries and
boundary confusion.
Terri Couwenhoven (18:09):
Wow, okay. I have a whole workshop on this.
a whole lot of reasons why wesee boundary confusion and
people with intellectualdisabilities. And, you know, one
Biggie and I think we have a lotof work to do in this areas,
when we that whole idea ofinfantile zation, you know,
(18:32):
thinking about people withintellectual disabilities as
perpetual children, we, youknow, the, most of the people
who believe this, don't do it onpurpose, but they just, it's
just there, and they don't havea lot of experience with people.
And so, you know, and I laugh,because I think my daughter
(18:53):
deals with this on a daily Ithink all of our sibs deal with
us on a daily basis, and wedon't always see it, but we were
at Target the other day. And somy daughter is 34. And she was
buying a DVD and we got in line.
And this cute old woman waschecking us out. And she looked
at Anna and she said, do want asticker. She pulled out this
(19:15):
little Disney sticker. And, andI kind of looked at me and you
know, we kind of have a script.
She has a practice grip that sheuses. And so I you know, I just
kind of shrugged my shoulders.
And she looked at the lady, shegoes, I'm 34 so, and I'm sure
the lady felt bad, but it wasthat, you know, that sort of
(19:37):
ongoing belief that people areyounger than they actually are.
So, when we believe that whenpeople have that in their heads,
it does affect the how we treatpeople and boundaries. So, you
know, in school age populationof people with intellectual
disabilities, you know, it mightlook like the teacher is, you
(20:00):
know, the hugging piece, theydon't deal with any of their
other students. But they, youknow, it sort of lingers into
middle school, not usually inhigh school. But so some of
those behaviors when we'remodeling that, it creates some
confusion about boundaries forour bar sips with intellectual
(20:21):
disabilities, right? In otherwords, they're experiencing this
modeled these model differencesin how we interact with people,
and it goes on for longerperiods of time. Right. So
there's, there's some confusionabout that. I think the other
piece is, and we know this nowis there's a model
(20:42):
desensitization. So forindividuals, for example, who
who need more help and supportwith intimate have intimate care
needs. There's people kind ofcoming in and out of their
physical spaces, more often,there's lots more people, and
they're doing it more often thanyou were I would experience
(21:03):
that. So that model dissentsthat desensitization is
something that carries over.
They do this to me, therefore, Ido this to other people, right?
It's modeled and it's engravedbecomes ingrained. And so
boundary instruction, you know,actually has to be taught. I
(21:24):
think the other piece isrelationship confusion. So, I
know a lot of people, I workwith a lot of people and
everybody's their friend, right?
Everybody's their friend.
There's no role distinction, ordifferentiation between, let's
say, a paid helper, and, youknow, a family member. And so
(21:44):
you just sort of treat everybodythe same. And so, yeah, there's
there's a lot of things that Ithink contribute to that
boundary confusion.
Chris Berstler (21:54):
Are there any resources that you can point us
to, as far as that's concerned?
Terri Couwenhoven (21:59):
Um, well, the most, I think the most popular
resource is the circlescurriculum, which is a visual
way to think about levels ofrelationships in a person's
life. And we can, and now theyhave a brand new version for
elementary school age. So we canstart this a lot earlier. But I
(22:22):
think, you know, it starts with,you know, my body is in the
middle. And then it's thepremise of the curriculum is,
you know, the less I know aperson, the less I talked to
touch and trust. So it's sort ofit builds on that concept. So
that's a really popular one forteaching about boundaries. The
(22:46):
other resource I mentioned, theadult Down Syndrome center does
have a little video on, youknow, you know, my, this is how
I touch paid helpers. And youknow, they're doing a high five.
And it's a very succinct, youknow, sometimes when people have
too many options is too hard,depending on the level of
(23:10):
intellectual disability. So, youknow, concrete, clear rules
sometimes work better forpeople. So they have a little
video on on boundaries as well.
Chris Berstler (23:21):
What is the likelihood that my sibling could
get an STD and how can I helpprotect them?
Terri Couwenhoven (23:28):
If they're sexually active, and they're
having unprotected vaginal sexbags and Pinoy, flat vaginal sex
or anal sex? They're at risk. Sothe, you know, as far as STD,
STI prefer vention. The onlyoptions we have are either
abstinence or condom use. Justlike for the general population,
(23:51):
so there is a video on that, onthat link. I gave you the
National Center Council onIndependent Living, they do have
a video on how to use a condom,how somebody gets pregnant.
Because that's also a reallycommon question that people
have, in order to understandbirth control and prevention and
(24:15):
protection. You kind of have toknow how somebody becomes
pregnant. So So yeah, condomuse. So there's a video on that.
Chris Berstler (24:26):
Lastly, in your opinion, how can we as siblings
do a good job of supporting oursibs love life, while balancing
our own lives?
Terri Couwenhoven (24:35):
We talked about kind of meeting yourself
where they're at and noteverybody wants to be in a
dating relationship and havesex. Okay, there's a there's a
wide range. But I think, youknow, David hangs Burr was a
very famous he's no longer withus, but he was a very famous
behaviorist and sexualityeducator professional out of
(24:58):
Canada. One of the one of hisfavorite quotes that I really
like is that, you know, need,the need for intimacy is far
greater than the need for sex.
And I think for a lot of thepeople I'm working with, they
just they do want and need that,you know, they're human, they
have the same needs that wehave. They want those human
connections, meaningfulrelationships. And so for
(25:21):
different people that that canmean different things. But we
did talk about how you how youcan support your serve. And, you
know, looking at that networkand understanding that network
of how you can get that support,so you're not the only one
providing that you're the onlyyou're not the only one doing
(25:46):
the work. I'll call it workbecause it is work.
Chris Berstler (25:53):
Yes, it is.
Terry, thank you so much forspeaking with us today. Any
resources that Terry mentionedtoday, you can find in the
description below. Terry, thankyou so much. It's been a
pleasure.
Terri Couwenhoven (26:09):
Thank you for having me.
Chris Berstler (26:11):
Find resources, tools and information about the
sibling experience on siblingleadership dot for the sibling
Leadership Network is anonprofit, and we rely on
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