0:03

Welcome to the

0:03

sibling Leadership Network

0:05

podcast. The sibling Leadership Network

0:06

is a national nonprofit whose

0:10

mission is to provide siblings

0:10

of individuals with disabilities

0:13

the information, support and

0:13

tools to advocate with their

0:16

brothers and sisters and to

0:16

promote the issue is important

0:18

to us and our entire families.

0:18

Thank you for joining us for

0:25

another episode of the sibling

0:25

Leadership Network Podcast.

0:28

Today we will be talking about

0:28

sexuality, disability and

0:31

sibling support. I'm joined

0:31

today by certified sexuality

0:34

educator Terry Colin joven.

0:34

Terry, thank you so much for

0:38

joining us today. Well, good to

0:38

be here. Could you just start

0:41

off by telling us a little bit

0:41

about yourself, your history

0:44

working in the disability and

0:44

sex education communities, and

0:48

what makes you so passionate

0:48

about your work?

0:51

Well, my

0:51

whole professional life, I have

0:54

been a sexuality educator. I

0:54

started out at Planned

0:59

Parenthood, I worked there for

0:59

many, many years. And that is a

1:03

you know, very common training

1:03

ground for people in the

1:07

sexuality professions. And then

1:07

I had just started to do some

1:13

programming that was unique and

1:13

specific to people with

1:17

intellectual disabilities. At

1:17

the time, there was a lot of

1:20

movement from institutions

1:20

deinstitutionalization was going

1:24

on, and people were living in

1:24

group homes. And I think people

1:29

were understanding that that

1:29

transition from institutions to

1:33

group homes, required people to

1:33

have some good solid

1:37

information, if they were going

1:37

to be in the community, it was a

1:39

different, you know, different

1:39

environments. So. So I was doing

1:43

a lot of programming for people

1:43

with intellectual disabilities.

1:46

And then, in 1989, my first

1:46

child with my first child was

1:52

born. And she happened to have

1:52

Down syndrome. So not something

1:56

we knew. But it was one of those

1:56

moments where you just kind of

2:02

say, well, I guess this is this

2:02

is what I was meant to do,

2:04

right? So I already had

2:04

recognized there was a huge need

2:10

for help and support in this

2:10

area for people with

2:15

intellectual disabilities, for

2:15

parents, for professionals. So I

2:19

started specializing, and

2:19

working exclusively with that

2:25

population. So that's how it all

2:25

started.

2:29

So what barriers

2:29

exist within the disability

2:32

community and society at large

2:32

to individuals with disabilities

2:36

advocating for sex education?

2:39

Well, you

2:39

know, we have come a long way.

2:41

But we there still are issues.

2:41

attitudes, I think, from the

2:48

general community, and myths.

2:48

You know, that belief that

2:54

people with intellectual

2:54

disabilities are not sexual

2:57

human beings, I think we still

2:57

battle that often on. And

3:03

usually, you know, usually, it's

3:03

because these individuals who

3:06

are supporting people or

3:06

parents, they're just, they're

3:10

just not aware, or they haven't

3:10

had experience. And we know,

3:15

there's a why there's a big

3:15

diversity in people with

3:18

intellectual disability. So this

3:18

can be very individualized, but

3:23

the attitudes are still there.

3:23

So so that myth that people, you

3:27

know, are asexual, or the other

3:27

myth, you know, those those

3:32

people with intellectual

3:32

disabilities are, you know,

3:35

their urges, and these are words

3:35

people have used with me, I'm

3:38

not just making these up. But

3:38

their urges are somehow bigger

3:42

and different than the general

3:42

population. So, you know, and

3:48

most of these attitudes, I

3:48

think, come from people who just

3:52

don't have a lot of experience

3:52

or are observing things that

3:57

aren't what they seem. So, so

3:57

that's certainly a big barrier.

4:04

We also know from the literature

4:04

that staff who are supporting

4:08

people with intellectual

4:08

disabilities, you know, often

4:11

understand that people have

4:11

rights, but they're just not

4:15

sure how to support them. And I

4:15

think that's true for parents

4:17

too. They're, you know, they're,

4:17

they know that their kids are

4:22

sexual human beings, but then

4:22

things happen, and they're a

4:25

little stuck, they get stuck,

4:25

right. So yeah, so we're still

4:32

kind of dealing with those

4:32

issues in different ways, shapes

4:35

or form, but when I look back

4:35

and see how things have moved

4:39

forward, we have made gains. You

4:39

know, as far as resources, you

4:45

know, in the olden days, I was

4:45

making up my own stuff, and

4:48

there just wasn't you know,

4:48

Winifred Kempton was the only

4:52

one who had developed a slide

4:52

series a really comprehensive

4:55

slide series that was pretty

4:55

graphic on sexuality, but it

4:59

viously in different

4:59

communities, that wasn't always

5:02

acceptable. So now we have many

5:02

more resources. I think that's

5:07

that's one of the gains and

5:07

there's a lot more people who

5:09

are doing training in the areas

5:09

of sexuality. So there's,

5:13

there's, there's more

5:13

individuals out there who are

5:16

interested and active and

5:16

providing sexuality education,

5:21

which is great. The more the

5:21

better.

5:24

Are there additional barriers that individuals with disabilities in

5:26

the bipoc and or other

5:29

intersectional identity

5:29

communities face? And what

5:33

advice or resources can you

5:33

offer to help them navigate

5:36

these barriers?

5:38

Yeah, that's,

5:38

that's a really good question, I

5:40

think depends, you know, your

5:40

access to resources and how

5:45

people address sexuality really

5:45

depends on the community you're

5:48

living, living in. And we know

5:48

that, um, you know, they're the,

5:56

the ableism, I think, is more

5:56

prominent and dominant in some

6:01

in some communities. And, you

6:01

know, when when there is racism

6:04

and ableism, we know that

6:04

quality of life outcomes are

6:09

diminished. So absolutely, I

6:09

think sexuality sort of moves

6:16

down to less of a priority when

6:16

people are living in less

6:23

fortunate communities. When we

6:23

talk about diverse identities

6:27

and sexuality, you know, and we,

6:27

we know, sexuality is diverse.

6:32

And we know it's also diverse

6:32

among the population, and people

6:35

have intellectual disabilities.

6:35

But when you start thinking

6:38

about the general population,

6:38

and how much support people

6:44

need, when they're struggling,

6:44

and trying to move through life,

6:51

with these diverse sexual

6:51

identities, we know that people

6:54

with intellectual disabilities

6:54

don't always have the same

6:56

access to support and in my

6:56

opinion, they need they need

7:00

more support than the general

7:00

population. So So yeah, that's,

7:05

that's tough, um, elevate us as

7:05

a national group. It's an old

7:10

colleague of mine from Planned

7:10

Parenthood, who does a lot of

7:15

more systemic training for

7:15

organizations and agencies, and

7:20

they have a really nice

7:20

curriculum, but they also have a

7:23

really nice website with

7:23

resources.

7:26

For sibs,

7:26

sexuality can be a real cringe

7:29

topic, what advice do you have

7:29

for any siblings out there

7:32

listening who want to help their

7:32

sibs with disabilities advocate

7:36

for their sex education?

7:39

there can be

7:39

a wide range of sexuality issues

7:42

for any individual with

7:42

intellectual disabilities. And I

7:45

guess my my best advice would be

7:45

to just listen and pay

7:49

attention. And sibs are great at

7:49

that. So you, you know, sibs

7:55

are, can be a conduit, between,

7:55

you know, what they're seeing

8:01

with their parent, and you're

8:01

observing all of that, and I

8:04

think they can fill in the gaps.

8:04

We know that. So listen, we know

8:10

listening and acknowledging and

8:10

feeling heard, are a really

8:15

important part of supporting

8:15

people in the area of sexuality.

8:18

So you know, don't, don't

8:18

underestimate that listening,

8:23

and helping your sub feel heard,

8:23

really important, and then

8:26

meeting them where they're at, I

8:26

mean, different people are going

8:29

to be in different places. So,

8:29

you know, you may have a sip,

8:33

who is, you know, really

8:33

interested in dating, you know,

8:36

they might express that they,

8:36

you know, they want to date, but

8:42

they just don't know how to go

8:42

about doing that. So one of the

8:46

things in my professional life

8:46

that I wanted to do was make

8:51

sure that people with

8:51

intellectual disabilities had

8:53

access to resources that were

8:53

for them. So, you know, in my

8:58

world, of supporting people, it

8:58

was really common, I was seeing

9:03

that it was really common for

9:03

them to want to date and that,

9:06

you know, they have the same

9:06

needs and desires and that we

9:09

all have, it's just that they,

9:09

they move into that world with

9:12

less information. So I think

9:12

that's really important to

9:15

remember. I wrote the dating

9:15

book, specifically for people

9:20

with intellectual disabilities,

9:20

as a way to help them understand

9:24

what are some really important

9:24

steps in the dating process? So

9:29

you know, finding someone, for

9:29

example, is a huge challenge for

9:34

the people that I work with.

9:34

It's really tough, and it's

9:36

really easy for us to say, well,

9:36

everybody struggles with finding

9:41

someone but there's a lot more

9:41

barriers, I think, for people

9:44

with intellectual disabilities.

9:44

You know, they have to deal with

9:48

the attitudes of the people

9:48

around them. They have to you

9:53

know, they in order to find

9:53

someone, they have to have a an

9:55

active social life and that in

9:55

itself, is it Challenge, or a

10:01

lot of the people that I work

10:01

with, I mean, they come to the

10:03

dating workshop thinking I'm

10:03

gonna find them a date, which,

10:06

you know, isn't that isn't what

10:06

the dating workshop is about.

10:10

But, um, so yeah, there's, you

10:10

know, access issues for a lot of

10:16

the people that I work with. So

10:16

listening, meeting them where

10:20

they're at, and then being that

10:20

conduit between, you know, the

10:24

parent, and you know, what the,

10:24

what you see the parent saying,

10:28

and what's what's reality. I

10:28

think sometimes parents are just

10:32

overwhelmed and can't always be

10:32

everything for everybody. I can

10:38

speak, I can say that as a

10:38

parent,

10:42

I can back you up the same things true, as a sib.

10:47

Yeah, yeah.

10:47

And that's the other challenge,

10:49

right? Because they're not

10:49

usually driving. They're, you

10:53

know, they require other people

10:53

to support them in making this

10:57

happen. And, you know, one of

10:57

the questions you asked me,

11:00

Chris, was, how can we? How can

11:00

we support our sibs when we have

11:07

our own lives? Right. And so one

11:07

of the things we talk about, and

11:11

I talk with parents about this,

11:11

too, is just building your

11:13

network. Because it can't all be

11:13

on you. So what does that

11:20

network look like? And I think

11:20

we have done a, we're improving,

11:25

as far as the ways that we're

11:25

providing long term support for

11:30

people with intellectual

11:30

disabilities and integrating

11:33

sexuality into those support

11:33

mechanisms. So I think it's, I

11:39

think that's the other thing

11:39

that's gotten better. Over time,

11:43

we talked about resources, but I

11:43

think support for people with

11:46

intellectual disabilities is

11:46

getting better to

11:49

Tell us a little

11:49

bit about what healthy dating

11:52

looks like for our sibs with

11:52

disabilities, and what resources

11:56

or advice can you offer to self

11:56

advocates and their families

12:00

around dating and Dave, dating

12:00

services or apps?

12:04

Well, healthy

12:04

dating for sips looks just like

12:08

it does for all of us. I mean,

12:08

we we want people to be in

12:12

relationships that are

12:12

respectful, and safe. And you

12:17

know, boundaries are respected

12:17

and their shared power. And we

12:21

want we want all those things

12:21

for everybody. So when we think

12:26

about people within, again, that

12:26

same needs, but less

12:29

information. So those are things

12:29

that we often have to teach

12:32

about. One of the most popular

12:32

questions when I'm working with

12:36

parents is, you know, when we

12:36

look at the general population,

12:41

the most, the most popular way

12:41

to find a partner is through

12:46

online dating or, you know,

12:46

apps. When we look at how that

12:52

might work for people with

12:52

intellectual disabilities,

12:54

there's been websites, there's

12:54

been apps that sort of come and

12:58

go, come and go, come and go.

12:58

And so I think, and sometimes

13:04

they're created by sibs. So

13:04

which is which is great, but I

13:08

think they don't realize how

13:08

hard it's going to be to kind of

13:12

keep those things up, and then

13:12

they just go away, which is

13:16

unfortunate. So unfortunately,

13:16

there's not as many, there's not

13:20

as much access to those same

13:20

kinds of ways to find a partner,

13:24

as there is in the general

13:24

population, which is

13:27

unfortunate. So if you are

13:27

connected, if your SIP is

13:32

connected to well connected to

13:32

your community, and you have

13:38

access to organizations that are

13:38

supporting people with

13:41

intellectual disabilities, I

13:41

think we're doing a much better

13:44

job at classes and programs that

13:44

can support people in not only

13:52

learning about dating, but you

13:52

know, finding people. You know,

13:57

I always say to families, you in

13:57

order for them to find someone

14:02

to date, they have to have an

14:02

active social life. And so that

14:05

is one of the roles that

14:05

organizations I mean, that

14:08

shouldn't be on sibs. Right?

14:08

That is an that is a role of

14:12

organizations in the community.

14:12

And I think we're doing a much

14:15

better job at making sure people

14:15

are active and supported and

14:20

have a good social life. So

14:20

that's a really important first

14:26

step. You know, if you're, if

14:26

you're interested in helping

14:29

your sibling learn, let's say,

14:29

let's say they're not getting

14:32

the concept of mutual interest,

14:32

which is sort of step two in my

14:36

dating process, right? The first

14:36

step is finding someone. The

14:40

second step is really seeing if

14:40

that person is interested. You

14:45

might be interested, but they

14:45

might not feel the same way. And

14:48

that's a really common I find

14:48

that for a lot of for some

14:51

people with intellectual disabilities. There's this assumption that if they really

14:53

really liked someone that it's

14:56

mutual, it's automatically

14:56

mutual. So that filler, that

15:00

flirting piece is something that

15:00

they've never been taught or

15:04

they don't understand. And so we

15:04

have to, you know, kind of teach

15:07

that skill. But if there's a

15:07

concept that you're you're

15:13

recognizing they don't

15:13

understand or there's a gap in

15:16

information there are the

15:16

National Council on Independent

15:21

Living, has a video series are

15:21

really nicely done video series

15:26

by people with intellectual

15:26

disabilities for people with

15:29

intellectual disabilities. And

15:29

there is one of the videos I

15:33

show a lot in my classes, which

15:33

is, you know, what happens if

15:37

you really like someone, but

15:37

they don't like you back? Is

15:40

there something wrong with you?

15:40

No, I, you know, kind of

15:42

addressing those feelings. And

15:42

so, um, and the people I work

15:46

with really do like videos, I

15:46

think that's, as far as teaching

15:51

strategies, it's a visual, they

15:51

understand it, it's just, it's,

15:55

it's easy. Sometimes I use

15:55

Amazon amazed.org is another

16:03

little short, animated videos of

16:03

a whole, they have tons and tons

16:09

of videos, and they're designed

16:09

not for people with intellectual

16:12

disabilities. But sometimes I do

16:12

use them they have a really

16:15

excellent one on safety in the

16:15

internet, and, you know, porn,

16:21

and kind of messages related to

16:21

porn that that we need to think

16:25

about. And then there's another

16:25

agency out of Canada, that has

16:31

done a series of videos in its

16:31

real talk.org www dot real talk,

16:38

real hyphen talk.org. So people

16:38

with intellectual disabilities,

16:44

kind of talking about a whole

16:44

variety of issues related to

16:49

sexuality. So those are some

16:49

resources, those are some go to

16:54

resources that I use all the

16:54

time. Another one of my favorite

16:58

resources is the adult Down

16:58

Syndrome clinic. And Illinois

17:04

has a great website, it's if you

17:04

go to the internet, and just

17:10

type in adult Down Syndrome

17:10

center resource page, you'll get

17:18

you'll get you'll get a list of

17:18

there's professional resources,

17:22

Parent Resources and resources

17:22

specifically for people with

17:25

Down syndrome. So and you know,

17:25

if you have a sibling with any

17:30

kind of intellectual disability,

17:30

though, they'll benefit from

17:33

that. But they've done some

17:33

really nice concrete succinct

17:36

handouts, low literacy handouts

17:36

for people to you know how to

17:42

break up what what a healthy

17:42

relationship looks like. So

17:49

those that's a, I sometimes use

17:49

those in my workshops as well.

17:53

Katie Frank, who's an OT there,

17:53

has done some really nice, has

17:57

created some really nice

17:57

resources. So that's another

18:02

option.

18:03

Tell us a little

18:03

bit about boundaries and

18:06

boundary confusion.

18:09

Wow, okay. I

18:09

have a whole workshop on this.

18:15

a whole lot of reasons why we

18:15

see boundary confusion and

18:19

people with intellectual

18:19

disabilities. And, you know, one

18:23

Biggie and I think we have a lot

18:23

of work to do in this areas,

18:28

when we that whole idea of

18:28

infantile zation, you know,

18:32

thinking about people with

18:32

intellectual disabilities as

18:36

perpetual children, we, you

18:36

know, the, most of the people

18:40

who believe this, don't do it on

18:40

purpose, but they just, it's

18:44

just there, and they don't have

18:44

a lot of experience with people.

18:49

And so, you know, and I laugh,

18:49

because I think my daughter

18:53

deals with this on a daily I

18:53

think all of our sibs deal with

18:57

us on a daily basis, and we

18:57

don't always see it, but we were

19:02

at Target the other day. And so

19:02

my daughter is 34. And she was

19:06

buying a DVD and we got in line.

19:06

And this cute old woman was

19:11

checking us out. And she looked

19:11

at Anna and she said, do want a

19:15

sticker. She pulled out this

19:15

little Disney sticker. And, and

19:19

I kind of looked at me and you

19:19

know, we kind of have a script.

19:24

She has a practice grip that she

19:24

uses. And so I you know, I just

19:29

kind of shrugged my shoulders.

19:29

And she looked at the lady, she

19:33

goes, I'm 34 so, and I'm sure

19:33

the lady felt bad, but it was

19:37

that, you know, that sort of

19:37

ongoing belief that people are

19:42

younger than they actually are.

19:42

So, when we believe that when

19:46

people have that in their heads,

19:46

it does affect the how we treat

19:51

people and boundaries. So, you

19:51

know, in school age population

19:55

of people with intellectual

19:55

disabilities, you know, it might

20:00

look like the teacher is, you

20:00

know, the hugging piece, they

20:04

don't deal with any of their

20:04

other students. But they, you

20:08

know, it sort of lingers into

20:08

middle school, not usually in

20:12

high school. But so some of

20:12

those behaviors when we're

20:16

modeling that, it creates some

20:16

confusion about boundaries for

20:21

our bar sips with intellectual

20:21

disabilities, right? In other

20:25

words, they're experiencing this

20:25

modeled these model differences

20:30

in how we interact with people,

20:30

and it goes on for longer

20:34

periods of time. Right. So

20:34

there's, there's some confusion

20:38

about that. I think the other

20:38

piece is, and we know this now

20:42

is there's a model

20:42

desensitization. So for

20:45

individuals, for example, who

20:45

who need more help and support

20:50

with intimate have intimate care

20:50

needs. There's people kind of

20:54

coming in and out of their

20:54

physical spaces, more often,

20:58

there's lots more people, and

20:58

they're doing it more often than

21:03

you were I would experience

21:03

that. So that model dissents

21:07

that desensitization is

21:07

something that carries over.

21:11

They do this to me, therefore, I

21:11

do this to other people, right?

21:15

It's modeled and it's engraved

21:15

becomes ingrained. And so

21:19

boundary instruction, you know,

21:19

actually has to be taught. I

21:24

think the other piece is

21:24

relationship confusion. So, I

21:28

know a lot of people, I work

21:28

with a lot of people and

21:32

everybody's their friend, right?

21:32

Everybody's their friend.

21:36

There's no role distinction, or

21:36

differentiation between, let's

21:40

say, a paid helper, and, you

21:40

know, a family member. And so

21:44

you just sort of treat everybody

21:44

the same. And so, yeah, there's

21:49

there's a lot of things that I

21:49

think contribute to that

21:53

boundary confusion.

21:54

Are there any

21:54

resources that you can point us

21:57

to, as far as that's concerned?

21:59

Um, well, the

21:59

most, I think the most popular

22:03

resource is the circles

22:03

curriculum, which is a visual

22:07

way to think about levels of

22:07

relationships in a person's

22:12

life. And we can, and now they

22:12

have a brand new version for

22:17

elementary school age. So we can

22:17

start this a lot earlier. But I

22:22

think, you know, it starts with,

22:22

you know, my body is in the

22:27

middle. And then it's the

22:27

premise of the curriculum is,

22:31

you know, the less I know a

22:31

person, the less I talked to

22:36

touch and trust. So it's sort of

22:36

it builds on that concept. So

22:41

that's a really popular one for

22:41

teaching about boundaries. The

22:46

other resource I mentioned, the

22:46

adult Down Syndrome center does

22:51

have a little video on, you

22:51

know, you know, my, this is how

22:55

I touch paid helpers. And you

22:55

know, they're doing a high five.

23:00

And it's a very succinct, you

23:00

know, sometimes when people have

23:05

too many options is too hard,

23:05

depending on the level of

23:10

intellectual disability. So, you

23:10

know, concrete, clear rules

23:15

sometimes work better for

23:15

people. So they have a little

23:19

video on on boundaries as well.

23:21

What is the

23:21

likelihood that my sibling could

23:25

get an STD and how can I help

23:25

protect them?

23:28

If they're

23:28

sexually active, and they're

23:32

having unprotected vaginal sex

23:32

bags and Pinoy, flat vaginal sex

23:37

or anal sex? They're at risk. So

23:37

the, you know, as far as STD,

23:42

STI prefer vention. The only

23:42

options we have are either

23:46

abstinence or condom use. Just

23:46

like for the general population,

23:51

so there is a video on that, on

23:51

that link. I gave you the

23:56

National Center Council on

23:56

Independent Living, they do have

24:01

a video on how to use a condom,

24:01

how somebody gets pregnant.

24:06

Because that's also a really

24:06

common question that people

24:10

have, in order to understand

24:10

birth control and prevention and

24:15

protection. You kind of have to

24:15

know how somebody becomes

24:20

pregnant. So So yeah, condom

24:20

use. So there's a video on that.

24:26

Lastly, in your

24:26

opinion, how can we as siblings

24:29

do a good job of supporting our

24:29

sibs love life, while balancing

24:33

our own lives?

24:35

We talked

24:35

about kind of meeting yourself

24:37

where they're at and not

24:37

everybody wants to be in a

24:42

dating relationship and have

24:42

sex. Okay, there's a there's a

24:45

wide range. But I think, you

24:45

know, David hangs Burr was a

24:50

very famous he's no longer with

24:50

us, but he was a very famous

24:53

behaviorist and sexuality

24:53

educator professional out of

24:58

Canada. One of the one of his

24:58

favorite quotes that I really

25:02

like is that, you know, need,

25:02

the need for intimacy is far

25:06

greater than the need for sex.

25:06

And I think for a lot of the

25:09

people I'm working with, they

25:09

just they do want and need that,

25:14

you know, they're human, they

25:14

have the same needs that we

25:16

have. They want those human

25:16

connections, meaningful

25:21

relationships. And so for

25:21

different people that that can

25:25

mean different things. But we

25:25

did talk about how you how you

25:30

can support your serve. And, you

25:30

know, looking at that network

25:38

and understanding that network

25:38

of how you can get that support,

25:41

so you're not the only one

25:41

providing that you're the only

25:46

you're not the only one doing

25:46

the work. I'll call it work

25:49

because it is work.

25:53

Yes, it is.

25:53

Terry, thank you so much for

25:59

speaking with us today. Any

25:59

resources that Terry mentioned

26:02

today, you can find in the

26:02

description below. Terry, thank

26:07

you so much. It's been a pleasure.

26:09

Thank you for having me.

26:11

Find resources,

26:11

tools and information about the

26:14

sibling experience on sibling

26:14

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26:18

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