Lindsey Mullis speaks with Impact managing editor Janet Stewart about the lack of training for caregivers to provide social-sexual supports for people with intellectual and developmental disabilities.

Read her article here: Supporting the Whole Person: The Case for Educating Caregivers

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- Hi everybody.

I'm really excited because

we've got a co-host today.

Pauline Bosma is the founder

and coordinator of the

Rainbow Support Groups

of Massachusetts.

Let's get started.

- Welcome

- To Impact the Conversation, a podcast

of the University of Minnesota's

Institute on community

integration that brings you strategies

and stories advancing

the inclusion of people

with disabilities.

Our guests are the authors of Impact,

our long running magazine

that bridges the research

to practice gap with professional

and personal reflections on

what matters most in

disability equity today.

I'm your host, Janet Stewart.

Welcome everybody.

Today we're talking about

the impact issue on sexuality

and gender identity.

My co-host is Pauline Bosma.

She served as the issue editor

and she also is the founder

and coordinator of the

Rainbow Support Groups

of Massachusetts.

Pauline and I are going to be talking

with Lindsay Catherine Mullis,

director of Inclusive Health

and Wellness at University

of Kentucky's Human Development Institute.

She also co-leads the A UCD Sexual

Health Special Interest Group.

And with both of those hats on,

Lindsay actually

contributed a, a couple of

of really terrific articles

for our issue on sexuality

and gender identity.

The main article was she wrote

with her colleague Lindsay Suave.

Am I saying that right, Lindsay?

So vey,

their article called

Supporting the Whole Person.

The case for educating caregivers,

really from their perspective

in, in a lot of training

that they've done over

their careers is, you know,

how do we support the people in our lives,

whether we are supporting

them professionally

or if they are family members,

how do we support people

with disabilities to have

meaningful relationships

that are romantic, sexual?

These are the deepest

relationships that we

as human beings really have,

and they're so important

for a lot of reasons,

for inclusion and for self-awareness

and self-fulfillment.

This is a, a huge topic

that we're grappling

with in this issue of the magazine.

And so we're really excited,

Lindsay, to have you here

and to share a little bit

about, you know, what,

what you brought to this

article, both from professional

and personal standpoints.

And, and I know Pauline,

who's worked with you

before, is excited to,

to chat with you as well.

So thank you both for,

for being part of this.

- Yeah, thank you so much.

Excited to, to be here.

- Yeah. Yeah.

So Pauline, you know, when you talked,

we talked a little bit

earlier about, you know, one

of the things that Pauline

did for this issue.

We have outside issue editors

who are experts in the field,

really review every article that

that is appears in the magazine.

And, you know, Pauline

and I were talking a

little bit about, you know,

what's the essence of this article

that Lindsay has written about, you know,

navigating these conversations

about supporting the person

in some of these relationships.

And, you know, what, what,

to you really, Pauline,

what really stood out to

you about this idea of

what can we do to support people?

What, what are some of

those important things?

- I think for me, the,

you know, what I've,

what I've learned from my knowledge

and everything like that is

that the key thing is just

having a network of either family

or friends or just somebody to talk to,

but also somebody that

can be like, you can go

to and just ask questions about something

and not be turn away

and not be put down or anything like that.

I mean, that's happened

plenty of times to me

where I've been put down or looked at

or talked about behind my back.

So, I mean, you know,

and you know, like IIII just

wanted to know like, like, like

how did you like, come up

with the idea for the article?

- That's a good one. Yeah.

- Yeah. That's a great, a

great first question, Pauline.

So I think what, when

Janet and I first met

and I was giving her all

the, the topics and ideas

and the context and the people

that are doing such wonderful

work in a such important area,

you know, one of the things

that that came up was what,

what's your unique lens?

The, the take that you have?

And for me,

I am not only a passionate

professional, you know, in the,

in this field, but also

personally I am the parent

to a level young lady Caroline,

who is currently 10 years old,

and she experiences down syndrome

and has a vision disability.

And so, so often that role

of the caregiver is not

included in those conversations

or in a part of the

work that's being done.

There's so much focus

on individual education.

And, and so, you know,

that was surprising to me.

So as a, as a parent going

to support my daughter who's on the, the,

the beginning stages of, of puberty

and thinking through supporting her

as she develops her sexuality,

you know, I really wanted to,

to have resources and support

and there's not a whole lot

out there for caregivers.

And then the more I dug into

that, the more I realized the,

the very, very interesting

nuances of that.

If it comes from the perspective

of a natural support like

a parent or a sibling,

or if you're talking about

paid supports like a staff

member, you know, or a case manager.

There's all these different

considerations of what that role

of the caregiver looks like when it comes

to supporting sexuality.

And so that's really where that,

that topic came, came together.

And the thing I love about

my, my co-chair, Lindsay,

Lindsay has such an incredible

human rights approach

to this topic.

And I think that she

and I compliment each other really well.

'cause I have the, the

personal passion side,

and then she can, you know,

balance with the legal side

and the aspect of things.

And then that's really

what we use as the voice

of our article and advocating

for inclusion of the role

of the caregiver when it comes

to supporting the whole person.

- And Lindsay, you, you wrote that

that caregivers can either

be critical challengers

or perpetuators of the myths

and negative attitudes

around sexuality and gender expression.

I thought that was so, that was

so powerful the way you said that.

Like just the importance of, of that role.

Can you talk a little bit about that and,

and how that shows up in your work?

- Yeah, absolutely.

I think that so often the

caregiver is the catalyst

to having positive

or negative experiences in, in the world

of sexuality for individuals.

So in the trainings that I've

done with a couple of parent

groups, you know, an example

of the negative aspect is the,

the mentality of, you know,

what my personal values and beliefs are.

Like that's what they are,

and that's what I'm gonna

impose on the individual with,

with disabilities that I'm supporting

and how that doesn't respect the

individual themselves, right?

And that, that can be such an issue.

And the, the, the flip

side of that is, is working

to support caregivers who say,

I wanna support, you know,

my child or the individual

that I work with in a way

that they need and meeting them.

And that supported decision making process

and how vastly different

those experiences are.

And unfortunately, in my neck

of the woods in Kentucky,

I've had more of the oppressive

experiences with some,

some caregivers that are really avoidant

that my child has an intellectual

development disability,

so we're not gonna talk about this topic,

and I'm not gonna work

to provide education

or social opportunities

or even think about that

they would wanna engage in a

romantic, let alone sexual relationship

or, you know, the, the

individuals that just have

their own mindsets

or the ways that they

want to view this topic

and imposing that on the

individuals with disabilities.

And so I think that helps

me really fuel that fire

to provide education and

advocacy for how important

and critical that caregiver role is

to provide positive supports.

- And Lindsay, can we unpack that just

for a second with Pauline?

Because I Pauline, you've,

you have worked directly

with people with disabilities,

and I'm sure you've heard

the similar stories about

maybe a caregiver

or family member isn't

actively working against

this idea, or they're not

being mean to the person

with disabilities.

You know, they, they

truly love the person.

They, they aren't trying to be backward

or, you know, you know, any,

any kind of negative influence

and yet just they just

don't see their loved

one or the person they're

supporting as, as a sexual being.

Right? You know, what,

what, what does, how does

that come out in your experience

for people with disabilities?

What does that feel like when

you know the person loves you,

but you also have a gut

feeling that they're trying

to protect you from just real

life and that's kind of hard?

- Well, I, for me it

was like that, I mean,

I have a really good story

that I love to tell people.

And it's really good

because it puts a little

thought to the, to the person.

Like, it was one of my very

first support groups that I went

through when I started that.

And the, you know, I went down

there and started the group

and there was a gentleman

who raised his hand

and he goes like, can I ask a question?

I said, sure, sure group you, you running,

you can say what you wanna say.

And he, and he literally looked at me

and he says, what does it mean

when I like somebody like me?

And I said, you mean another man?

He goes, yeah, you know, I

said, that means you're gay.

Now, at that time, none of his,

his agency or his people

or his, anybody within his

life, would they answer

that question.

Because like I said

earlier here in messages,

we have the department of the

environmental service, DDS

and, you know, the agency

could have gotten in trouble

because, 'cause the department

could have, can say,

you influence him on saying that word gay.

And I'm going like, no, he

just asked you a question.

He, you're not influencing him.

But that's been a blockage.

Is that because people don't realize

that you can do those things?

You can ask those questions

and not be get in trouble

or, you know, so,

- Oh, this is a, this is a critical topic

that Pauline raises and

and it's something Yeah, go ahead. I mean,

- I wanna ask sort on the,

like one, what are you,

are you least trying to like

educate more staff

and agencies within your area

trying a little bit at a

time, but not overwhelm them?

Because I know this could

be an overwhelming topic.

- Right. Well, and I think too is, is

what I'm learning is it's very

unique to the agency, right?

The the specific agency that

you're working to support

and what their policies

and procedures are, the

individual staff that work there,

and then as well as the individuals

with intellectual invis

disabilities that are

taking advantage of that program

or service if they have a state

guardian versus if they have

a natural support and how it is

that their values and beliefs plan to it.

And so what I've learned is

that there's not some very

simple all blanket answer, right?

That there's this training

that everybody can take.

And it's gonna be wonderful,

is you have to really have

that individualized approach based on all

of those unique environmental factors.

And so what I have done locally for,

for me is I completed the, the training,

the Elevate us training from

Catherine McLaughlin has a

staff and a natural

not well parents sort of staff

and a parent training for

her program in addition

to the individual education.

So I got trained in that program as well

as in sexuality for all abilities.

They have a staff training.

So being able to have the

two different certifications

and being able to pull from,

from, from those programs

and to try to fit into what

can help support what is

what is available, right.

And being asked for. But what

I've learned is you gotta take

a little bit, they're not

gonna let you come necessarily

and do this whole, you

know, eight hour training

or even just the full, the

full scope of the program.

But if I can get even just

a little bit of time to talk

to administration right, or

staff and to support this,

or if I get invited to come

and do 60 minute training

at a conference, we,

my colleague Austin Nugent

and I presented at the

Kentucky Ending Sexual Violence

Conference last December.

So having any opportunity that

we can to provide education

and advocacy and then say,

and look at all these great resources

that you probably had no idea existed to,

to you get us in the door to

get that conversation started,

that still counts as a,

as a huge win, I think.

'cause we have a lot of work to do.

- And Lindsay, following up on, on

what Pauline was talking about, that

that critical moment when

somebody says, oh, we, you know,

it's kind of like, don't say gay, right?

Like, we, we don't wanna,

they, they kind of accuse you

of leading someone with an

intellectual disability,

for example, down a path.

Oh, you've, you've made

them this way, you've,

you've done too much to

influence them to be this way.

How do you educate people and,

and get them to see that, that

that's not what's happening.

- Yeah, unfortunately,

I have experienced that

as a response on several occasions in,

in different settings and typically, so,

- So, so give a for

instance, like how have,

how has that been?

Give us an example of that.

- So that happened

to me in particular in

one caregiver training

that we were doing virtually

where there was some,

some pushback from, from

some natural supports.

I think there was a parent and a sibling

that were representing,

supporting the same individual

that came very hard at me that,

that this is just a propaganda

that all the, the DSPs

and the staff have that

we're gonna try to promote

that there's more homosexuality

in this population.

And so in that moment, you

know, I said, well, you know,

I can understand that you feel that way.

So acknowledging that I heard

what, what they had expressed,

and I said you, but our,

our time together here is

to really focus on these resources

and training that are positive supports

that are human rights based,

and that we're gonna focus

on supporting the individual

and needs that, that they have

and giving them that

expectation of structure as to

what it was that we were talking about.

And then also coming back with

some of the, of the research,

there's research that exists

out there that, you know,

abstinence only is not, is

not the way to go, right?

That having a more comprehensive approach

to sex education is

gonna be more beneficial.

There's research that

shows that more oppressive

and restrictive opportunities

in this topic actually

promote abuse

and interpersonal violence

for folks with intellectual

and developmental disabilities.

So being able to cite some of

that literature is also something

that I can use to provide,

you know, clout and,

and support to what I'm

saying when I say I,

I hear your concern,

but I need you to know that

we're focusing on the individual

and these are the things that, you know,

we can show in the literature

that supports research

that really negates this false, you know,

myth that you're bringing forward.

And then on occasion, sometimes

individuals don't, don't,

don't care to receive that information.

And I, I've learned that I, I have

to just make it very clear

that our time together is gonna

focus on what we need to do

for positive sexuality supports

and encourage them to continue being

part of the conversation.

- And Pauline, I'm curious,

has, has this happened to you?

Has, did anyone, early on,

I know you had some negative

experiences when you told your

family that you are transgender woman and,

and that led to some

estrangement in your family.

Did did anyone ever try to

say, oh, you're not, that,

that you've been, you've

been told this by people.

Did they ever try to argue with you?

- Oh, there's, there's been one

or two people in my life that have tried,

like I had

A-A-A-D-D-S

state support person that

tried to say like, you know,

she's saying like, you

are not, you are not trans

and this is all just, you

know, I'm just pretending this,

that, and, you know, and I

was telling her other things.

I was saying like, like, hey,

at the time I was getting,

I was getting constant

headaches every single day, day.

And she goes, and she goes

and she goes, well, you

know, she was saying, well,

maybe the headaches on the

pills that you're taking.

And I said, I said, okay,

I'll, I'll prove it to you.

So I went to my doctor

and I said, I said, Hey,

can you wean me off some of my pills?

And she goes, yeah, so why?

I said, I gotta prove something

to my, to my support person.

And she goes, okay. So my doctor weed me

off and with my dad.

Then about a month later I

went to, I went to go see her

and I said, I said, oh, by the

way, I'm off all my hormones,

haven't taken hormones for about a month.

Oh, and one other thing,

I'm still getting headaches,

you know, so I mean,

so when ate the pills

that's giving me headaches.

There's just something else.

And, and I said, I know who I am

and I know what I, what

I am and with my dad

and I'm proud of it and with

my that and I gotta give,

and I, I can't work with you no more.

So I have to say like, I

gotta, I gotta report you

to your boss because you're

not letting me be me.

- Wow. And did you, did you do that

and follow up and Yeah, yeah,

- Yeah. Yes. You got

- Track.

And so when you're, and

so when you have a new

DSPA direct support professional

or someone new in your life

helping you out with things,

do you have any advice for other people

with disabilities on things

that you've done to sort

of let them know this

is, this is who I am?

- Just to be upfront and honest?

I mean, it is like, like

we have haven me, we have

this, it's called an ISP personal progress

before meeting every year.

For me, it goes over everything

that I'm doing, all the,

my whole life story that

I've done for about a year.

And in my ISPI, I put that

I am a transgender person

and my ISP because I

wanted to let, you know,

somebody opens a folder

and they open up the

booklet, they know who I am,

they see it, that it's there,

it is who I am, this is

who I am, so I'm not hiding it.

And I'm going like,

you gotta accept me for

who I am regardless.

- And Lindsay, on a,

on a global scale, and,

and it's tough to answer this I'm sure,

but are,

if this information is getting into more,

more support plans,

is is the caretaking field equipped

to customize itself

and handle that so that someone who really

isn't gonna be able to, to support

that person in an appropriate

way, there are other options?

Or is the caregiving crisis

so dire that sometimes

those kinds things get overlooked?

- Yeah, I think I, that's

a, that's a tough question.

I think it's really gonna

be specific to states

and systematic approaches

to really knowing

what the result would

be from staff turnover

and the issues there with

being able to have access

to, to staff.

But I think Pauline, thank you for sharing

that incredible story.

And I think the, the, the thing

that I was coming back in response to

that is having an appropriate

part of staff training

that acknowledges those

personal beliefs and values.

So that's a part of some

of the, the trainings

that I've done is acknowledging

what somebody's thought

process is of what,

what they believe that

they bring to that table,

and acknowledging what that is.

And then recognizing that

from a paid staff perspective,

that now needs to go on a shelf

because that's your personal beliefs

and you're here to support the individual.

We're gonna meet them

where their needs are

and where their supports

are needed to have

that positive interaction.

And I think recognizing that

for some staff that is doable

and for some that, that might

not be a, a possibility.

And then recognizing it's not

just that individual level,

but also the environmental

and systematic approach from the agency

and how there needs to be

policies written in place, that

that's the expectation, right?

That we're going to recognize

the individual and their needs

and the things that they're representing

and gonna honor that.

And if that's an expectation

from the top down,

then the staff is gonna be

more supported to be able

to support the sexuality positively

of the individuals on

their, under their care.

- That's great. And can you

tell us a little bit about how

and why you wanted to start

the special interest group?

- Well, I didn't st I will

say I didn't start it.

I joined it when we had a site

visit in Kentucky from Andy,

and Parado was the UCD

director at the time.

And I had a pleasure of meeting him

and having a conversation with him.

And I told him that I was

interested in the topic

of sexuality and there was no

funded projects in Kentucky,

but I did what I could on the side,

and he thought you should check out

the special interest group.

And so I started to join the meetings

and at that time, Julie

Atkinson was, was leading that

with Rebecca from Alaska.

And I really enjoy getting

to connect with this network

of other passionate individuals.

Some of them are

professionals in the network,

but there's also self-advocates.

There's individuals that

are doing work in the field

that aren't associated with the, you said.

And so it was just a really great way

to learn about the work

being done in this community

and connect with others.

And then as time went on

and Julie needed a partner,

she asked me to, to join,

join the ranks with her.

And that was an incredible

opportunity to get to be a part

of the sexual talk sex talk

for Self-Advocates

webinar series that we did

that spanned over several years.

And all of that was informed

by surveys that were sent out

for self-advocates to ask questions.

And so that was an incredible

project that was done.

And then as, as Julie retired,

that's when Lindsay joined me,

and we've, we've worked

over the last little bit

to expand topics on, on internet safety.

Consent's been a really big thing

that people have wanted to focus on.

But what I love most is just the network,

the listserv is incredible.

If somebody has questions about something

or they need help with sharing

a resource, different kinds

of things, it's, it's just a great network

of folks to connect with.

- And there, there have been

some strides in getting more

information out there.

There's, there's certainly

some podcasts now.

There's disability after

dark, there's, there's some

that are really getting some traction.

Do you, do you listen to any of those?

Do you, are you excited about that?

Is it is just more better?

Is is that as they say?

- Yeah, there's so much

great work going on in,

in this field of sexuality and disability.

I just wish that it was less siloed.

There's a lot going on in

a lot of different pockets

and in different areas, and

the network's a great way

to stay connected, but then

there's still a good handful

of folks doing great work

that aren't a part of the network either.

So I wish that there

was a, a national entity

that could take all the wonderful

things that are happening

and put together a clearinghouse

library of resources

that we could then, you

know, use to our disposal.

That would be, that's the dream.

That's the pipe dream

right there to be able

to know all the cool

things that are happening.

- That's wonderful. Pauline,

any other questions on

your mind for Lindsey?

- Well, I mean, I would not, you know,

like if you ever need input, I would love

to give you more input on anything

that you're doing if you

want my help or anything

because, you know, I'm

always, I'm always looking to,

and you know, I, I, you know,

I just wanted to like, like,

like one thing that I wanted just add

and that it's not really a question.

It's more what, like, so

I live in Massachusetts

and I work, you know, like

the main agency that I work

for is called Mass Strong,

and they're a state agency

and they get funded by

the state and they by that

and you know, they are always,

you know, they director

of other programming,

he is always telling me,

he is going like, well, you know,

you've gotta work within Massachusetts.

And I'm going like, yeah,

but there's a whole world there of

self-advocates that need

to know what's going on out there.

Not just Massachusetts, I mean,

because you got other parts

of the world going on and

they all have the same issues.

They're all talking about the same thing.

They're all discussing

it in their own format.

We kind of like, how do we get those dots

connected to each other? You

- Know, kind of like Lindsay

said with the silos, right?

And you're talking about

the state limitations. Yeah.

- What do you think? And

I think to follow that up,

Pauline is too, is normalizing sexuality I

think is so important.

So recognizing that even

some of the work that Lindsay

and I have done in the past

with the stick, we have

to delicately navigate

sometimes using the word

relationships, like healthy

relationships instead

of calling it what it is

and understanding that sexuality

is this spectrum of all

of these different topics that can include

so many different things, but

just the act of intercourse

or how somebody expresses themselves

or what gender they are, all

of these different things are

so, so intertwined.

And I think if we could

normalize sexuality,

that would also be an

incredible way to help start

to connect those dots.

- And along those lines, I loved

what you brought up in

your article about just the

concept of self-pleasure.

No one really talks about

that and disability.

So that's another one too. And

it's a great segue into the,

my final question, which was, you know,

you also wrote a lovely

personal story about being a mom

and thinking about all of this

as you raise your three daughters.

Can you talk a little bit about that?

- Yeah, actually, I am really

proud of my, my middle kiddo.

She just this past week

expressed her body autonomy

and she just turned seven.

And so getting to witness

her as a child expressed

to a family member at a holiday event,

an adult family member that

was male, I'm not in the mood

for a hug right now,

and my body is my choice

if I don't wanna do that.

And I was just so proud of

her, so, so proud of her.

And so I think, you know,

again, with, with, even in

that moment, I was the only adult I think

in the room that was proud of her.

Everyone else was taken aback of like,

but that, no, you should give a hug.

No, it's her body.

And she was so polite and firm

and to know that, I think sometimes I talk

to my kiddos and I explain

things in this topic,

and I try to do it age appropriately.

And especially with Caroline knowing

that she's such a visual

learner with her disability,

you know, try to find ways to

provide information in a way

that I know she can absorb it,

but we don't necessarily have

great conversations like we're

having today on a podcast.

But to know that they're

still hearing those messages

and they're still understanding

and respecting that.

Like even just the other

night at the dinner table,

we were talking about how

girls can have long hair

or short hair, and boys can

have long hair or short hair,

and that's, that's a choice

that they can have about their bodies.

And something as simple as

that is still teaching respect

for someone else.

And that just makes me really,

really proud as a, as a mom

and also a passionate professional to know

that these are the kinds of conversations

that we need to be having.

- Pauline, what do you think about that?

You know, when you think about I, yeah,

- I think that that's very important

because, you know, I didn't

really have the opportunity to

learn about sexual education

or learn about anything

because, you know, my,

my, my mother was a,

you know, a depression

that she grew up in the Great

Depression with my that, so

back then they, they didn't

talk about body or sexuality

or gender or anything like that

because they, they didn't wanna hear

it and nothing like that.

And it's like, no, we, we don't talk about

that stuff, you know?

So, you know,

and you know, I just saw where like,

like it was on, I think it was on the news

program, something like that.

And they were talking,

they were talking to Dr.

Ruth, you know, where she just, I,

I think she just turned like 90 years old

or something like that, you know,

and here she is, she's still active

and talking about sexual health

and sexual really relationship.

I'm going like, and this

is a woman that basically

got the topic on TV to talk about it.

I'm going like, here we

are now, we're trying

to get out there and

like that. So, you know.

- Yeah, I, I haven't thought about Dr.

Ruth in a long time, but maybe

that's the kind of example,

Lindsay, where, where we

do need to break through

and go into those more mainstream kinds

of conversations, right?

- Yeah. I think that's an excellent idea

and an excellent role

model for us, Pauline,

to model ourselves after.

- Yeah, well, I mean, I would

like to just, you know, like,

like just ask her a question to,

and saying like, you know,

like, like ask her a question,

like, how do you think we've,

we, I know what she's not.

You know, we asked like,

look how far we come,

but look how far we've

also grown back to, we've

gone forward a little bit.

We also go backwards, you know,

so I mean, I understand that. So

- That, and that was a lot of

our issue, wasn't it, Pauline?

A lot of the articles

that you reviewed for,

that we all reviewed for, for the issue,

talked a little bit about

that backsliding and,

and the fact that we're

all getting a little more

uncomfortable talking

about some of this stuff.

And any other final thoughts on that?

Just the, the idea of, you

know, what the field needs to do

to bring out some more

of these conversations?

- For me, I just think

keep on talking about it

and gradually, you know, like

people might come around,

but you know, you gotta, you can't,

one thing I learned is you

can't force it on anybody

and you can't, you gotta let

them go at their own pace

and you gotta let them figure it out.

And I, but I'm not gonna sit there

and, you know, force it on anybody.

I don't say, Hey, you don't wanna

listen, you don't wanna listen.

Don't, don't be here.

I don't, I don't care.

So don't skin off my back if you don't

wanna be here, I don't care. So, yeah.

- That's great. Lindsay, any

other final, it's just been

so good to to chat with

you about all this.

Any, any other thoughts

on, on supporting people

with disabilities in their sexual lives,

in their gender identity?

- Yeah, I think that just

making sure to involve

the full scope of the

environment for the individual.

So what does that look like?

What is, what is the caregiver role

or what is the, the, the role

and the policy procedures at the agency?

Going back to a lot of

things I talked about today

and thinking through all of

those intersectional points.

Because if we just focus on the individual

and providing them with support

to advocate for themself

or to acknowledge, like you're

talking about the individual,

your, your work group

or the support group

that you had, Pauline,

that acknowledging, asking those questions

and having a safe, trusted

place to be able to do that

and really focusing on that bigger,

bigger scope than just

individual education

is really gonna be key.

'cause I don't think we can

be successful if we don't

consider all of those access points.

- I wanna thank you Pauline.

I wanna thank you Lindsay,

for sharing really your life's

work, both of you with us.

It's given us a lot to think

about and a lot to act on.

And we are just so pleased

to have you both contributors

to this issue of impact.

You really made a difference.

So I wanna thank you for that.

- Yeah, thank you so

much for the opportunity.

And I, and following up the

last thing that Pauline said,

one of my favorite things when I get

to talk on this topic is to

have a picture of Caroline

and her sisters in my presentation slides,

because I wanna express that as a parent,

I have the same expectations for Caroline

as I do for Marcella and Eva.

The fact that, that she's gonna

have romantic relationships

and experience heartbreak

and, and all of those things.

Like, I want them to have

those same experiences,

but recognize that as her caregiver,

she will require some different

supports to be able to do

that successfully or positively

and wanna take that

responsibility seriously.

So's hard. I just wanted to leave.

- That's hard, but that's hard, isn't it?

Like, how, as a parent

who your first instinct is

to protect them from the bad things

that Pauline talked about,

that every, you know, that,

that we all know can happen.

So how, how is that for you

when you do think about, yes,

you want these experiences

for all your daughters,

but there, there might be,

we could certainly understand

and forgive if you were a little

overprotective of Caroline.

So how do you get over that hump?

- That's a great question.

I think for me, my

perception on that is that,

you know, we learn from

those mistakes, right?

Those heartbreaks, those kinds of things.

Or how we learn and grow

for ourselves once you probably

smile and shaking her head.

So if we never had those

opportunities for growth,

then there's so much more

that we need to learn.

So being able to recognize the value in,

in those moments,

but also acknowledge that individuals

with intellectual disabilities

are seven times more likely

to be sexually assaulted.

So knowing that teaching about

sexuality and being that safe

and trusted place for my, for my kiddos

or for any individual that I'm supporting

and helping them find that is

so critically important in

teaching those skills about body

autonomy, autonomy

and abuse reduction is an important

part of the conversation.

'cause if I only focus

on the positive things

and don't support them to

be prepared for the negative

or for the scary, then I'm

just setting them up for,

for having more failure

or for having a more negative experience.

So, and I learned that very

early on when I started in this

topic, Pauline, the very first

time I presented on this,

I was like, I'm only gonna

have positive sexuality

and talk about it in that way.

And I very quickly learned the very

- Questions I got.

- You can't do that. Nope.

You gotta acknowledge

the challenges to be able

- To, I mean, I, you know, like,

like when I was growing up,

you know, my mother, I

went, I went to school

and I went home, didn't,

didn't do any clubs,

didn't do any social groups

or anything like that

because my mother just won't

wanted me to stay home.

She didn't want me to do anything.

And you know,

and I didn't, I didn't

learn how to socialize.

I didn't learn how to do anything

because it's like I, you know,

I'm still learning today how

to socialize and how to be around people.

I mean, I could be around people

and I could talk to people,

but somewhere along the day

I'm gonna go like, okay,

I gotta go get some alone time.

So I'm gonna go run outside

and I'm gonna go be by myself

for, for about, you know,

a little while to get some

fresh air or whatever, but,

'cause I can't take it, you know? So yeah.

- Pauline, just curious,

- Just curious. Learning.

- Yeah. Just curious, Pauline, did you,

do you feel like when you

started expressing yourself

more fully as a woman, that some

of that socializing got easier?

- Y yeah, because because I I,

I went to a therapist once, right?

A transgender therapist

a long, long time ago.

And he, he gave me a really good analogy

that I like to use once in a while.

I would use it all the time.

You know, I told him I

was transgender, I said,

or Crossdressing, whatever.

And I said, you know, when

I would get dressed up,

I would be relaxed, my

brain would be calmed down

with my dad 'cause it would be as one.

And I said, I can, I can

go out and buy dresses

and buy all this stuff,

but then a month later I'm

gonna be throwing it all away

and buy new stuff, you know?

And he said to me, he said,

he said, he said, he said,

who you are is in your

DNA as part of your gene

as part of who you are.

And I kind of, you know,

took that for granted.

And I said, he's right.

It's part of who I am.

I'm not gonna, I can't,

can't change the brain,

so I gotta change the body

to match the brain, you know?

And I kind of figured that

out, you know, it's like, okay.

And after I started getting

dressed up more, my brain kind

of like relaxed and I wasn't

as nervous and tensed up

and going like, oh my

God, what am I doing?

You know? And it just made

me feel better, you know?

So, you know, but I had to

learn on my own, you know,

there was, there was nobody

that, that to show me how to,

you know, like, like how

to buy certain things.

I'm going like, I don't know,

you know, like, like I went

to a friend of mine, I said, how do,

how do I get a, how do I get a bra?

Where do I go? Where do, what do I do?

And she said, I'll, I'll take you out.

So she took me a brush off

'cause she wanted to help me, you know,

but I didn't have anybody else

to help me, you know, I said,

I, I get to know these things, you know?

- Perfect. Perfect. So,

well, thank you so much.

This was, this was beyond

expectations from both of you.

I really, really appreciate you

appalling helping me co-host

and Lindsay as always, just

from start to finish, you were

so terrific advising this issue.

I just really wanna

thank you for that and,

and I hope we'll stay in

touch and come back sometime

and give us an update

on, on both of your work.

- Thank you. Yeah, so

much. It was my pleasure.

- Thanks

- For joining the conversation.

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