Episode 5
Sexuality and IDD: Recognizing Rights
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
Subscribe to Impact
Transcript
- Hi everybody.
Speaker:I'm really excited because
we've got a co-host today.
Speaker:Pauline Bosma is the founder
Speaker:and coordinator of the
Rainbow Support Groups
Speaker:of Massachusetts.
Speaker:Let's get started.
Speaker:- Welcome
- To Impact the Conversation, a podcast
Speaker:of the University of Minnesota's
Institute on community
Speaker:integration that brings you strategies
Speaker:and stories advancing
the inclusion of people
Speaker:with disabilities.
Speaker:Our guests are the authors of Impact,
Speaker:our long running magazine
that bridges the research
Speaker:to practice gap with professional
Speaker:and personal reflections on
Speaker:what matters most in
disability equity today.
Speaker:I'm your host, Janet Stewart.
Speaker:Welcome everybody.
Speaker:Today we're talking about
the impact issue on sexuality
Speaker:and gender identity.
Speaker:My co-host is Pauline Bosma.
Speaker:She served as the issue editor
and she also is the founder
Speaker:and coordinator of the
Rainbow Support Groups
Speaker:of Massachusetts.
Speaker:Pauline and I are going to be talking
Speaker:with Lindsay Catherine Mullis,
director of Inclusive Health
Speaker:and Wellness at University
Speaker:of Kentucky's Human Development Institute.
Speaker:She also co-leads the A UCD Sexual
Speaker:Health Special Interest Group.
Speaker:And with both of those hats on,
Speaker:Lindsay actually
contributed a, a couple of
Speaker:of really terrific articles
for our issue on sexuality
Speaker:and gender identity.
Speaker:The main article was she wrote
Speaker:with her colleague Lindsay Suave.
Speaker:Am I saying that right, Lindsay?
Speaker:So vey,
Speaker:their article called
Supporting the Whole Person.
Speaker:The case for educating caregivers,
Speaker:really from their perspective
in, in a lot of training
Speaker:that they've done over
their careers is, you know,
Speaker:how do we support the people in our lives,
Speaker:whether we are supporting
them professionally
Speaker:or if they are family members,
how do we support people
Speaker:with disabilities to have
meaningful relationships
Speaker:that are romantic, sexual?
Speaker:These are the deepest
relationships that we
Speaker:as human beings really have,
Speaker:and they're so important
for a lot of reasons,
Speaker:for inclusion and for self-awareness
Speaker:and self-fulfillment.
Speaker:This is a, a huge topic
that we're grappling
Speaker:with in this issue of the magazine.
Speaker:And so we're really excited,
Lindsay, to have you here
Speaker:and to share a little bit
about, you know, what,
Speaker:what you brought to this
article, both from professional
Speaker:and personal standpoints.
Speaker:And, and I know Pauline,
who's worked with you
Speaker:before, is excited to,
to chat with you as well.
Speaker:So thank you both for,
for being part of this.
Speaker:- Yeah, thank you so much.
Excited to, to be here.
Speaker:- Yeah. Yeah.
Speaker:So Pauline, you know, when you talked,
Speaker:we talked a little bit
earlier about, you know, one
Speaker:of the things that Pauline
did for this issue.
Speaker:We have outside issue editors
who are experts in the field,
Speaker:really review every article that
Speaker:that is appears in the magazine.
Speaker:And, you know, Pauline
Speaker:and I were talking a
little bit about, you know,
Speaker:what's the essence of this article
Speaker:that Lindsay has written about, you know,
Speaker:navigating these conversations
about supporting the person
Speaker:in some of these relationships.
Speaker:And, you know, what, what,
to you really, Pauline,
Speaker:what really stood out to
you about this idea of
Speaker:what can we do to support people?
Speaker:What, what are some of
those important things?
Speaker:- I think for me, the,
you know, what I've,
Speaker:what I've learned from my knowledge
Speaker:and everything like that is
that the key thing is just
Speaker:having a network of either family
Speaker:or friends or just somebody to talk to,
Speaker:but also somebody that
can be like, you can go
Speaker:to and just ask questions about something
Speaker:and not be turn away
Speaker:and not be put down or anything like that.
Speaker:I mean, that's happened
plenty of times to me
Speaker:where I've been put down or looked at
Speaker:or talked about behind my back.
Speaker:So, I mean, you know,
Speaker:and you know, like IIII just
wanted to know like, like, like
Speaker:how did you like, come up
Speaker:with the idea for the article?
Speaker:- That's a good one. Yeah.
Speaker:- Yeah. That's a great, a
great first question, Pauline.
Speaker:So I think what, when
Janet and I first met
Speaker:and I was giving her all
the, the topics and ideas
Speaker:and the context and the people
Speaker:that are doing such wonderful
work in a such important area,
Speaker:you know, one of the things
that that came up was what,
Speaker:what's your unique lens?
Speaker:The, the take that you have?
Speaker:And for me,
Speaker:I am not only a passionate
professional, you know, in the,
Speaker:in this field, but also
personally I am the parent
Speaker:to a level young lady Caroline,
Speaker:who is currently 10 years old,
Speaker:and she experiences down syndrome
Speaker:and has a vision disability.
Speaker:And so, so often that role
Speaker:of the caregiver is not
included in those conversations
Speaker:or in a part of the
work that's being done.
Speaker:There's so much focus
on individual education.
Speaker:And, and so, you know,
that was surprising to me.
Speaker:So as a, as a parent going
Speaker:to support my daughter who's on the, the,
Speaker:the beginning stages of, of puberty
Speaker:and thinking through supporting her
Speaker:as she develops her sexuality,
you know, I really wanted to,
Speaker:to have resources and support
Speaker:and there's not a whole lot
out there for caregivers.
Speaker:And then the more I dug into
that, the more I realized the,
Speaker:the very, very interesting
nuances of that.
Speaker:If it comes from the perspective
Speaker:of a natural support like
a parent or a sibling,
Speaker:or if you're talking about
paid supports like a staff
Speaker:member, you know, or a case manager.
Speaker:There's all these different
considerations of what that role
Speaker:of the caregiver looks like when it comes
Speaker:to supporting sexuality.
Speaker:And so that's really where that,
Speaker:that topic came, came together.
Speaker:And the thing I love about
my, my co-chair, Lindsay,
Speaker:Lindsay has such an incredible
human rights approach
Speaker:to this topic.
Speaker:And I think that she
Speaker:and I compliment each other really well.
Speaker:'cause I have the, the
personal passion side,
Speaker:and then she can, you know,
balance with the legal side
Speaker:and the aspect of things.
Speaker:And then that's really
what we use as the voice
Speaker:of our article and advocating
for inclusion of the role
Speaker:of the caregiver when it comes
Speaker:to supporting the whole person.
Speaker:- And Lindsay, you, you wrote that
Speaker:that caregivers can either
be critical challengers
Speaker:or perpetuators of the myths
Speaker:and negative attitudes
Speaker:around sexuality and gender expression.
Speaker:I thought that was so, that was
Speaker:so powerful the way you said that.
Speaker:Like just the importance of, of that role.
Speaker:Can you talk a little bit about that and,
Speaker:and how that shows up in your work?
Speaker:- Yeah, absolutely.
Speaker:I think that so often the
caregiver is the catalyst
Speaker:to having positive
Speaker:or negative experiences in, in the world
Speaker:of sexuality for individuals.
Speaker:So in the trainings that I've
done with a couple of parent
Speaker:groups, you know, an example
of the negative aspect is the,
Speaker:the mentality of, you know,
Speaker:what my personal values and beliefs are.
Speaker:Like that's what they are,
Speaker:and that's what I'm gonna
impose on the individual with,
Speaker:with disabilities that I'm supporting
Speaker:and how that doesn't respect the
Speaker:individual themselves, right?
Speaker:And that, that can be such an issue.
Speaker:And the, the, the flip
side of that is, is working
Speaker:to support caregivers who say,
I wanna support, you know,
Speaker:my child or the individual
that I work with in a way
Speaker:that they need and meeting them.
Speaker:And that supported decision making process
Speaker:and how vastly different
those experiences are.
Speaker:And unfortunately, in my neck
of the woods in Kentucky,
Speaker:I've had more of the oppressive
experiences with some,
Speaker:some caregivers that are really avoidant
Speaker:that my child has an intellectual
development disability,
Speaker:so we're not gonna talk about this topic,
Speaker:and I'm not gonna work
to provide education
Speaker:or social opportunities
Speaker:or even think about that
they would wanna engage in a
Speaker:romantic, let alone sexual relationship
Speaker:or, you know, the, the
individuals that just have
Speaker:their own mindsets
Speaker:or the ways that they
want to view this topic
Speaker:and imposing that on the
individuals with disabilities.
Speaker:And so I think that helps
me really fuel that fire
Speaker:to provide education and
advocacy for how important
Speaker:and critical that caregiver role is
Speaker:to provide positive supports.
Speaker:- And Lindsay, can we unpack that just
Speaker:for a second with Pauline?
Speaker:Because I Pauline, you've,
you have worked directly
Speaker:with people with disabilities,
Speaker:and I'm sure you've heard
the similar stories about
Speaker:maybe a caregiver
Speaker:or family member isn't
actively working against
Speaker:this idea, or they're not
being mean to the person
Speaker:with disabilities.
Speaker:You know, they, they
truly love the person.
Speaker:They, they aren't trying to be backward
Speaker:or, you know, you know, any,
any kind of negative influence
Speaker:and yet just they just
don't see their loved
Speaker:one or the person they're
supporting as, as a sexual being.
Speaker:Right? You know, what,
what, what does, how does
Speaker:that come out in your experience
Speaker:for people with disabilities?
Speaker:What does that feel like when
you know the person loves you,
Speaker:but you also have a gut
feeling that they're trying
Speaker:to protect you from just real
life and that's kind of hard?
Speaker:- Well, I, for me it
was like that, I mean,
Speaker:I have a really good story
that I love to tell people.
Speaker:And it's really good
Speaker:because it puts a little
thought to the, to the person.
Speaker:Like, it was one of my very
first support groups that I went
Speaker:through when I started that.
Speaker:And the, you know, I went down
there and started the group
Speaker:and there was a gentleman
who raised his hand
Speaker:and he goes like, can I ask a question?
Speaker:I said, sure, sure group you, you running,
Speaker:you can say what you wanna say.
Speaker:And he, and he literally looked at me
Speaker:and he says, what does it mean
when I like somebody like me?
Speaker:And I said, you mean another man?
Speaker:He goes, yeah, you know, I
said, that means you're gay.
Speaker:Now, at that time, none of his,
Speaker:his agency or his people
Speaker:or his, anybody within his
life, would they answer
Speaker:that question.
Speaker:Because like I said
earlier here in messages,
Speaker:we have the department of the
environmental service, DDS
Speaker:and, you know, the agency
could have gotten in trouble
Speaker:because, 'cause the department
could have, can say,
Speaker:you influence him on saying that word gay.
Speaker:And I'm going like, no, he
just asked you a question.
Speaker:He, you're not influencing him.
But that's been a blockage.
Speaker:Is that because people don't realize
Speaker:that you can do those things?
Speaker:You can ask those questions
and not be get in trouble
Speaker:or, you know, so,
Speaker:- Oh, this is a, this is a critical topic
Speaker:that Pauline raises and
Speaker:and it's something Yeah, go ahead. I mean,
Speaker:- I wanna ask sort on the,
like one, what are you,
Speaker:are you least trying to like
Speaker:educate more staff
Speaker:and agencies within your area
Speaker:trying a little bit at a
time, but not overwhelm them?
Speaker:Because I know this could
be an overwhelming topic.
Speaker:- Right. Well, and I think too is, is
Speaker:what I'm learning is it's very
unique to the agency, right?
Speaker:The the specific agency that
you're working to support
Speaker:and what their policies
Speaker:and procedures are, the
individual staff that work there,
Speaker:and then as well as the individuals
Speaker:with intellectual invis
disabilities that are
Speaker:taking advantage of that program
Speaker:or service if they have a state
guardian versus if they have
Speaker:a natural support and how it is
Speaker:that their values and beliefs plan to it.
Speaker:And so what I've learned is
Speaker:that there's not some very
simple all blanket answer, right?
Speaker:That there's this training
that everybody can take.
Speaker:And it's gonna be wonderful,
is you have to really have
Speaker:that individualized approach based on all
Speaker:of those unique environmental factors.
Speaker:And so what I have done locally for,
Speaker:for me is I completed the, the training,
Speaker:the Elevate us training from
Catherine McLaughlin has a
Speaker:staff and a natural
Speaker:not well parents sort of staff
Speaker:and a parent training for
her program in addition
Speaker:to the individual education.
Speaker:So I got trained in that program as well
Speaker:as in sexuality for all abilities.
Speaker:They have a staff training.
Speaker:So being able to have the
two different certifications
Speaker:and being able to pull from,
from, from those programs
Speaker:and to try to fit into what
can help support what is
Speaker:what is available, right.
Speaker:And being asked for. But what
I've learned is you gotta take
Speaker:a little bit, they're not
gonna let you come necessarily
Speaker:and do this whole, you
know, eight hour training
Speaker:or even just the full, the
full scope of the program.
Speaker:But if I can get even just
a little bit of time to talk
Speaker:to administration right, or
staff and to support this,
Speaker:or if I get invited to come
Speaker:and do 60 minute training
at a conference, we,
Speaker:my colleague Austin Nugent
Speaker:and I presented at the
Kentucky Ending Sexual Violence
Speaker:Conference last December.
Speaker:So having any opportunity that
we can to provide education
Speaker:and advocacy and then say,
Speaker:and look at all these great resources
Speaker:that you probably had no idea existed to,
Speaker:to you get us in the door to
get that conversation started,
Speaker:that still counts as a,
as a huge win, I think.
Speaker:'cause we have a lot of work to do.
Speaker:- And Lindsay, following up on, on
Speaker:what Pauline was talking about, that
Speaker:that critical moment when
somebody says, oh, we, you know,
Speaker:it's kind of like, don't say gay, right?
Speaker:Like, we, we don't wanna,
they, they kind of accuse you
Speaker:of leading someone with an
intellectual disability,
Speaker:for example, down a path.
Speaker:Oh, you've, you've made
them this way, you've,
Speaker:you've done too much to
influence them to be this way.
Speaker:How do you educate people and,
Speaker:and get them to see that, that
that's not what's happening.
Speaker:- Yeah, unfortunately,
I have experienced that
Speaker:as a response on several occasions in,
Speaker:in different settings and typically, so,
Speaker:- So, so give a for
instance, like how have,
Speaker:how has that been?
Speaker:Give us an example of that.
Speaker:- So that happened
Speaker:to me in particular in
one caregiver training
Speaker:that we were doing virtually
where there was some,
Speaker:some pushback from, from
some natural supports.
Speaker:I think there was a parent and a sibling
Speaker:that were representing,
supporting the same individual
Speaker:that came very hard at me that,
Speaker:that this is just a propaganda
that all the, the DSPs
Speaker:and the staff have that
we're gonna try to promote
Speaker:that there's more homosexuality
in this population.
Speaker:And so in that moment, you
know, I said, well, you know,
Speaker:I can understand that you feel that way.
Speaker:So acknowledging that I heard
what, what they had expressed,
Speaker:and I said you, but our,
our time together here is
Speaker:to really focus on these resources
Speaker:and training that are positive supports
Speaker:that are human rights based,
Speaker:and that we're gonna focus
on supporting the individual
Speaker:and needs that, that they have
Speaker:and giving them that
expectation of structure as to
Speaker:what it was that we were talking about.
Speaker:And then also coming back with
some of the, of the research,
Speaker:there's research that exists
out there that, you know,
Speaker:abstinence only is not, is
not the way to go, right?
Speaker:That having a more comprehensive approach
Speaker:to sex education is
gonna be more beneficial.
Speaker:There's research that
shows that more oppressive
Speaker:and restrictive opportunities
in this topic actually
Speaker:promote abuse
Speaker:and interpersonal violence
for folks with intellectual
Speaker:and developmental disabilities.
Speaker:So being able to cite some of
Speaker:that literature is also something
that I can use to provide,
Speaker:you know, clout and,
Speaker:and support to what I'm
saying when I say I,
Speaker:I hear your concern,
Speaker:but I need you to know that
we're focusing on the individual
Speaker:and these are the things that, you know,
Speaker:we can show in the literature
that supports research
Speaker:that really negates this false, you know,
Speaker:myth that you're bringing forward.
Speaker:And then on occasion, sometimes
individuals don't, don't,
Speaker:don't care to receive that information.
Speaker:And I, I've learned that I, I have
Speaker:to just make it very clear
Speaker:that our time together is gonna
focus on what we need to do
Speaker:for positive sexuality supports
Speaker:and encourage them to continue being
Speaker:part of the conversation.
Speaker:- And Pauline, I'm curious,
has, has this happened to you?
Speaker:Has, did anyone, early on,
Speaker:I know you had some negative
experiences when you told your
Speaker:family that you are transgender woman and,
Speaker:and that led to some
estrangement in your family.
Speaker:Did did anyone ever try to
say, oh, you're not, that,
Speaker:that you've been, you've
been told this by people.
Speaker:Did they ever try to argue with you?
Speaker:- Oh, there's, there's been one
Speaker:or two people in my life that have tried,
Speaker:like I had
Speaker:A-A-A-D-D-S
Speaker:state support person that
tried to say like, you know,
Speaker:she's saying like, you
are not, you are not trans
Speaker:and this is all just, you
know, I'm just pretending this,
Speaker:that, and, you know, and I
was telling her other things.
Speaker:I was saying like, like, hey,
at the time I was getting,
Speaker:I was getting constant
headaches every single day, day.
Speaker:And she goes, and she goes
Speaker:and she goes, well, you
know, she was saying, well,
Speaker:maybe the headaches on the
pills that you're taking.
Speaker:And I said, I said, okay,
I'll, I'll prove it to you.
Speaker:So I went to my doctor
Speaker:and I said, I said, Hey,
Speaker:can you wean me off some of my pills?
Speaker:And she goes, yeah, so why?
Speaker:I said, I gotta prove something
to my, to my support person.
Speaker:And she goes, okay. So my doctor weed me
Speaker:off and with my dad.
Speaker:Then about a month later I
went to, I went to go see her
Speaker:and I said, I said, oh, by the
way, I'm off all my hormones,
Speaker:haven't taken hormones for about a month.
Speaker:Oh, and one other thing,
I'm still getting headaches,
Speaker:you know, so I mean,
Speaker:so when ate the pills
that's giving me headaches.
Speaker:There's just something else.
Speaker:And, and I said, I know who I am
Speaker:and I know what I, what
I am and with my dad
Speaker:and I'm proud of it and with
my that and I gotta give,
Speaker:and I, I can't work with you no more.
Speaker:So I have to say like, I
gotta, I gotta report you
Speaker:to your boss because you're
not letting me be me.
Speaker:- Wow. And did you, did you do that
Speaker:and follow up and Yeah, yeah,
Speaker:- Yeah. Yes. You got
Speaker:- Track.
Speaker:And so when you're, and
so when you have a new
Speaker:DSPA direct support professional
Speaker:or someone new in your life
helping you out with things,
Speaker:do you have any advice for other people
Speaker:with disabilities on things
that you've done to sort
Speaker:of let them know this
is, this is who I am?
Speaker:- Just to be upfront and honest?
Speaker:I mean, it is like, like
we have haven me, we have
Speaker:this, it's called an ISP personal progress
Speaker:before meeting every year.
Speaker:For me, it goes over everything
that I'm doing, all the,
Speaker:my whole life story that
I've done for about a year.
Speaker:And in my ISPI, I put that
I am a transgender person
Speaker:and my ISP because I
wanted to let, you know,
Speaker:somebody opens a folder
Speaker:and they open up the
booklet, they know who I am,
Speaker:they see it, that it's there,
it is who I am, this is
Speaker:who I am, so I'm not hiding it.
Speaker:And I'm going like,
you gotta accept me for
Speaker:who I am regardless.
Speaker:- And Lindsay, on a,
on a global scale, and,
Speaker:and it's tough to answer this I'm sure,
Speaker:but are,
Speaker:if this information is getting into more,
Speaker:more support plans,
Speaker:is is the caretaking field equipped
Speaker:to customize itself
Speaker:and handle that so that someone who really
Speaker:isn't gonna be able to, to support
Speaker:that person in an appropriate
way, there are other options?
Speaker:Or is the caregiving crisis
so dire that sometimes
Speaker:those kinds things get overlooked?
Speaker:- Yeah, I think I, that's
a, that's a tough question.
Speaker:I think it's really gonna
be specific to states
Speaker:and systematic approaches
to really knowing
Speaker:what the result would
be from staff turnover
Speaker:and the issues there with
being able to have access
Speaker:to, to staff.
Speaker:But I think Pauline, thank you for sharing
Speaker:that incredible story.
Speaker:And I think the, the, the thing
Speaker:that I was coming back in response to
Speaker:that is having an appropriate
part of staff training
Speaker:that acknowledges those
personal beliefs and values.
Speaker:So that's a part of some
of the, the trainings
Speaker:that I've done is acknowledging
Speaker:what somebody's thought
process is of what,
Speaker:what they believe that
they bring to that table,
Speaker:and acknowledging what that is.
Speaker:And then recognizing that
from a paid staff perspective,
Speaker:that now needs to go on a shelf
Speaker:because that's your personal beliefs
Speaker:and you're here to support the individual.
Speaker:We're gonna meet them
where their needs are
Speaker:and where their supports
are needed to have
Speaker:that positive interaction.
Speaker:And I think recognizing that
for some staff that is doable
Speaker:and for some that, that might
not be a, a possibility.
Speaker:And then recognizing it's not
just that individual level,
Speaker:but also the environmental
Speaker:and systematic approach from the agency
Speaker:and how there needs to be
policies written in place, that
Speaker:that's the expectation, right?
Speaker:That we're going to recognize
the individual and their needs
Speaker:and the things that they're representing
Speaker:and gonna honor that.
Speaker:And if that's an expectation
from the top down,
Speaker:then the staff is gonna be
more supported to be able
Speaker:to support the sexuality positively
Speaker:of the individuals on
their, under their care.
Speaker:- That's great. And can you
tell us a little bit about how
Speaker:and why you wanted to start
the special interest group?
Speaker:- Well, I didn't st I will
say I didn't start it.
Speaker:I joined it when we had a site
visit in Kentucky from Andy,
Speaker:and Parado was the UCD
director at the time.
Speaker:And I had a pleasure of meeting him
Speaker:and having a conversation with him.
Speaker:And I told him that I was
interested in the topic
Speaker:of sexuality and there was no
funded projects in Kentucky,
Speaker:but I did what I could on the side,
Speaker:and he thought you should check out
Speaker:the special interest group.
Speaker:And so I started to join the meetings
Speaker:and at that time, Julie
Atkinson was, was leading that
Speaker:with Rebecca from Alaska.
Speaker:And I really enjoy getting
to connect with this network
Speaker:of other passionate individuals.
Speaker:Some of them are
professionals in the network,
Speaker:but there's also self-advocates.
Speaker:There's individuals that
are doing work in the field
Speaker:that aren't associated with the, you said.
Speaker:And so it was just a really great way
Speaker:to learn about the work
being done in this community
Speaker:and connect with others.
Speaker:And then as time went on
Speaker:and Julie needed a partner,
she asked me to, to join,
Speaker:join the ranks with her.
Speaker:And that was an incredible
opportunity to get to be a part
Speaker:of the sexual talk sex talk
Speaker:for Self-Advocates
webinar series that we did
Speaker:that spanned over several years.
Speaker:And all of that was informed
by surveys that were sent out
Speaker:for self-advocates to ask questions.
Speaker:And so that was an incredible
project that was done.
Speaker:And then as, as Julie retired,
Speaker:that's when Lindsay joined me,
Speaker:and we've, we've worked
over the last little bit
Speaker:to expand topics on, on internet safety.
Speaker:Consent's been a really big thing
Speaker:that people have wanted to focus on.
Speaker:But what I love most is just the network,
Speaker:the listserv is incredible.
Speaker:If somebody has questions about something
Speaker:or they need help with sharing
a resource, different kinds
Speaker:of things, it's, it's just a great network
Speaker:of folks to connect with.
Speaker:- And there, there have been
some strides in getting more
Speaker:information out there.
Speaker:There's, there's certainly
some podcasts now.
Speaker:There's disability after
dark, there's, there's some
Speaker:that are really getting some traction.
Speaker:Do you, do you listen to any of those?
Speaker:Do you, are you excited about that?
Speaker:Is it is just more better?
Is is that as they say?
Speaker:- Yeah, there's so much
great work going on in,
Speaker:in this field of sexuality and disability.
Speaker:I just wish that it was less siloed.
Speaker:There's a lot going on in
a lot of different pockets
Speaker:and in different areas, and
the network's a great way
Speaker:to stay connected, but then
there's still a good handful
Speaker:of folks doing great work
Speaker:that aren't a part of the network either.
Speaker:So I wish that there
was a, a national entity
Speaker:that could take all the wonderful
things that are happening
Speaker:and put together a clearinghouse
library of resources
Speaker:that we could then, you
know, use to our disposal.
Speaker:That would be, that's the dream.
Speaker:That's the pipe dream
right there to be able
Speaker:to know all the cool
things that are happening.
Speaker:- That's wonderful. Pauline,
Speaker:any other questions on
your mind for Lindsey?
Speaker:- Well, I mean, I would not, you know,
Speaker:like if you ever need input, I would love
Speaker:to give you more input on anything
Speaker:that you're doing if you
want my help or anything
Speaker:because, you know, I'm
always, I'm always looking to,
Speaker:and you know, I, I, you know,
I just wanted to like, like,
Speaker:like one thing that I wanted just add
Speaker:and that it's not really a question.
Speaker:It's more what, like, so
I live in Massachusetts
Speaker:and I work, you know, like
the main agency that I work
Speaker:for is called Mass Strong,
and they're a state agency
Speaker:and they get funded by
the state and they by that
Speaker:and you know, they are always,
you know, they director
Speaker:of other programming,
he is always telling me,
Speaker:he is going like, well, you know,
Speaker:you've gotta work within Massachusetts.
Speaker:And I'm going like, yeah,
Speaker:but there's a whole world there of
Speaker:self-advocates that need
Speaker:to know what's going on out there.
Speaker:Not just Massachusetts, I mean,
Speaker:because you got other parts
Speaker:of the world going on and
they all have the same issues.
Speaker:They're all talking about the same thing.
Speaker:They're all discussing
it in their own format.
Speaker:We kind of like, how do we get those dots
Speaker:connected to each other? You
Speaker:- Know, kind of like Lindsay
said with the silos, right?
Speaker:And you're talking about
the state limitations. Yeah.
Speaker:- What do you think? And
I think to follow that up,
Speaker:Pauline is too, is normalizing sexuality I
Speaker:think is so important.
Speaker:So recognizing that even
some of the work that Lindsay
Speaker:and I have done in the past
with the stick, we have
Speaker:to delicately navigate
sometimes using the word
Speaker:relationships, like healthy
relationships instead
Speaker:of calling it what it is
Speaker:and understanding that sexuality
is this spectrum of all
Speaker:of these different topics that can include
Speaker:so many different things, but
just the act of intercourse
Speaker:or how somebody expresses themselves
Speaker:or what gender they are, all
of these different things are
Speaker:so, so intertwined.
Speaker:And I think if we could
normalize sexuality,
Speaker:that would also be an
incredible way to help start
Speaker:to connect those dots.
Speaker:- And along those lines, I loved
Speaker:what you brought up in
your article about just the
Speaker:concept of self-pleasure.
Speaker:No one really talks about
that and disability.
Speaker:So that's another one too. And
it's a great segue into the,
Speaker:my final question, which was, you know,
Speaker:you also wrote a lovely
personal story about being a mom
Speaker:and thinking about all of this
Speaker:as you raise your three daughters.
Speaker:Can you talk a little bit about that?
Speaker:- Yeah, actually, I am really
proud of my, my middle kiddo.
Speaker:She just this past week
expressed her body autonomy
Speaker:and she just turned seven.
Speaker:And so getting to witness
her as a child expressed
Speaker:to a family member at a holiday event,
Speaker:an adult family member that
was male, I'm not in the mood
Speaker:for a hug right now,
Speaker:and my body is my choice
if I don't wanna do that.
Speaker:And I was just so proud of
her, so, so proud of her.
Speaker:And so I think, you know,
again, with, with, even in
Speaker:that moment, I was the only adult I think
Speaker:in the room that was proud of her.
Speaker:Everyone else was taken aback of like,
Speaker:but that, no, you should give a hug.
Speaker:No, it's her body.
Speaker:And she was so polite and firm
Speaker:and to know that, I think sometimes I talk
Speaker:to my kiddos and I explain
things in this topic,
Speaker:and I try to do it age appropriately.
Speaker:And especially with Caroline knowing
Speaker:that she's such a visual
learner with her disability,
Speaker:you know, try to find ways to
provide information in a way
Speaker:that I know she can absorb it,
Speaker:but we don't necessarily have
great conversations like we're
Speaker:having today on a podcast.
Speaker:But to know that they're
still hearing those messages
Speaker:and they're still understanding
and respecting that.
Speaker:Like even just the other
night at the dinner table,
Speaker:we were talking about how
girls can have long hair
Speaker:or short hair, and boys can
have long hair or short hair,
Speaker:and that's, that's a choice
Speaker:that they can have about their bodies.
Speaker:And something as simple as
that is still teaching respect
Speaker:for someone else.
Speaker:And that just makes me really,
really proud as a, as a mom
Speaker:and also a passionate professional to know
Speaker:that these are the kinds of conversations
Speaker:that we need to be having.
Speaker:- Pauline, what do you think about that?
Speaker:You know, when you think about I, yeah,
Speaker:- I think that that's very important
Speaker:because, you know, I didn't
really have the opportunity to
Speaker:learn about sexual education
or learn about anything
Speaker:because, you know, my,
my, my mother was a,
Speaker:you know, a depression
Speaker:that she grew up in the Great
Depression with my that, so
Speaker:back then they, they didn't
talk about body or sexuality
Speaker:or gender or anything like that
Speaker:because they, they didn't wanna hear
Speaker:it and nothing like that.
Speaker:And it's like, no, we, we don't talk about
Speaker:that stuff, you know?
Speaker:So, you know,
Speaker:and you know, I just saw where like,
Speaker:like it was on, I think it was on the news
Speaker:program, something like that.
Speaker:And they were talking,
they were talking to Dr.
Speaker:Ruth, you know, where she just, I,
Speaker:I think she just turned like 90 years old
Speaker:or something like that, you know,
Speaker:and here she is, she's still active
Speaker:and talking about sexual health
Speaker:and sexual really relationship.
Speaker:I'm going like, and this
is a woman that basically
Speaker:got the topic on TV to talk about it.
Speaker:I'm going like, here we
are now, we're trying
Speaker:to get out there and
like that. So, you know.
Speaker:- Yeah, I, I haven't thought about Dr.
Speaker:Ruth in a long time, but maybe
that's the kind of example,
Speaker:Lindsay, where, where we
do need to break through
Speaker:and go into those more mainstream kinds
Speaker:of conversations, right?
Speaker:- Yeah. I think that's an excellent idea
Speaker:and an excellent role
model for us, Pauline,
Speaker:to model ourselves after.
Speaker:- Yeah, well, I mean, I would
like to just, you know, like,
Speaker:like just ask her a question to,
Speaker:and saying like, you know,
like, like ask her a question,
Speaker:like, how do you think we've,
we, I know what she's not.
Speaker:You know, we asked like,
look how far we come,
Speaker:but look how far we've
also grown back to, we've
Speaker:gone forward a little bit.
Speaker:We also go backwards, you know,
Speaker:so I mean, I understand that. So
Speaker:- That, and that was a lot of
our issue, wasn't it, Pauline?
Speaker:A lot of the articles
that you reviewed for,
Speaker:that we all reviewed for, for the issue,
Speaker:talked a little bit about
that backsliding and,
Speaker:and the fact that we're
all getting a little more
Speaker:uncomfortable talking
about some of this stuff.
Speaker:And any other final thoughts on that?
Speaker:Just the, the idea of, you
know, what the field needs to do
Speaker:to bring out some more
of these conversations?
Speaker:- For me, I just think
keep on talking about it
Speaker:and gradually, you know, like
people might come around,
Speaker:but you know, you gotta, you can't,
Speaker:one thing I learned is you
can't force it on anybody
Speaker:and you can't, you gotta let
them go at their own pace
Speaker:and you gotta let them figure it out.
Speaker:And I, but I'm not gonna sit there
Speaker:and, you know, force it on anybody.
Speaker:I don't say, Hey, you don't wanna
Speaker:listen, you don't wanna listen.
Speaker:Don't, don't be here.
I don't, I don't care.
Speaker:So don't skin off my back if you don't
Speaker:wanna be here, I don't care. So, yeah.
Speaker:- That's great. Lindsay, any
other final, it's just been
Speaker:so good to to chat with
you about all this.
Speaker:Any, any other thoughts
on, on supporting people
Speaker:with disabilities in their sexual lives,
Speaker:in their gender identity?
Speaker:- Yeah, I think that just
making sure to involve
Speaker:the full scope of the
environment for the individual.
Speaker:So what does that look like?
Speaker:What is, what is the caregiver role
Speaker:or what is the, the, the role
Speaker:and the policy procedures at the agency?
Speaker:Going back to a lot of
things I talked about today
Speaker:and thinking through all of
those intersectional points.
Speaker:Because if we just focus on the individual
Speaker:and providing them with support
to advocate for themself
Speaker:or to acknowledge, like you're
talking about the individual,
Speaker:your, your work group
Speaker:or the support group
that you had, Pauline,
Speaker:that acknowledging, asking those questions
Speaker:and having a safe, trusted
place to be able to do that
Speaker:and really focusing on that bigger,
Speaker:bigger scope than just
individual education
Speaker:is really gonna be key.
Speaker:'cause I don't think we can
be successful if we don't
Speaker:consider all of those access points.
Speaker:- I wanna thank you Pauline.
Speaker:I wanna thank you Lindsay,
Speaker:for sharing really your life's
work, both of you with us.
Speaker:It's given us a lot to think
about and a lot to act on.
Speaker:And we are just so pleased
to have you both contributors
Speaker:to this issue of impact.
Speaker:You really made a difference.
So I wanna thank you for that.
Speaker:- Yeah, thank you so
much for the opportunity.
Speaker:And I, and following up the
last thing that Pauline said,
Speaker:one of my favorite things when I get
Speaker:to talk on this topic is to
have a picture of Caroline
Speaker:and her sisters in my presentation slides,
Speaker:because I wanna express that as a parent,
Speaker:I have the same expectations for Caroline
Speaker:as I do for Marcella and Eva.
Speaker:The fact that, that she's gonna
have romantic relationships
Speaker:and experience heartbreak
and, and all of those things.
Speaker:Like, I want them to have
those same experiences,
Speaker:but recognize that as her caregiver,
Speaker:she will require some different
supports to be able to do
Speaker:that successfully or positively
Speaker:and wanna take that
responsibility seriously.
Speaker:So's hard. I just wanted to leave.
Speaker:- That's hard, but that's hard, isn't it?
Speaker:Like, how, as a parent
who your first instinct is
Speaker:to protect them from the bad things
Speaker:that Pauline talked about,
that every, you know, that,
Speaker:that we all know can happen.
Speaker:So how, how is that for you
when you do think about, yes,
Speaker:you want these experiences
for all your daughters,
Speaker:but there, there might be,
we could certainly understand
Speaker:and forgive if you were a little
overprotective of Caroline.
Speaker:So how do you get over that hump?
Speaker:- That's a great question.
Speaker:I think for me, my
perception on that is that,
Speaker:you know, we learn from
those mistakes, right?
Speaker:Those heartbreaks, those kinds of things.
Speaker:Or how we learn and grow
Speaker:for ourselves once you probably
smile and shaking her head.
Speaker:So if we never had those
opportunities for growth,
Speaker:then there's so much more
that we need to learn.
Speaker:So being able to recognize the value in,
Speaker:in those moments,
Speaker:but also acknowledge that individuals
Speaker:with intellectual disabilities
are seven times more likely
Speaker:to be sexually assaulted.
Speaker:So knowing that teaching about
sexuality and being that safe
Speaker:and trusted place for my, for my kiddos
Speaker:or for any individual that I'm supporting
Speaker:and helping them find that is
Speaker:so critically important in
teaching those skills about body
Speaker:autonomy, autonomy
Speaker:and abuse reduction is an important
Speaker:part of the conversation.
Speaker:'cause if I only focus
on the positive things
Speaker:and don't support them to
be prepared for the negative
Speaker:or for the scary, then I'm
just setting them up for,
Speaker:for having more failure
Speaker:or for having a more negative experience.
Speaker:So, and I learned that very
early on when I started in this
Speaker:topic, Pauline, the very first
time I presented on this,
Speaker:I was like, I'm only gonna
have positive sexuality
Speaker:and talk about it in that way.
Speaker:And I very quickly learned the very
Speaker:- Questions I got.
Speaker:- You can't do that. Nope.
Speaker:You gotta acknowledge
the challenges to be able
Speaker:- To, I mean, I, you know, like,
like when I was growing up,
Speaker:you know, my mother, I
went, I went to school
Speaker:and I went home, didn't,
didn't do any clubs,
Speaker:didn't do any social groups
or anything like that
Speaker:because my mother just won't
wanted me to stay home.
Speaker:She didn't want me to do anything.
Speaker:And you know,
Speaker:and I didn't, I didn't
learn how to socialize.
Speaker:I didn't learn how to do anything
Speaker:because it's like I, you know,
I'm still learning today how
Speaker:to socialize and how to be around people.
Speaker:I mean, I could be around people
and I could talk to people,
Speaker:but somewhere along the day
I'm gonna go like, okay,
Speaker:I gotta go get some alone time.
Speaker:So I'm gonna go run outside
Speaker:and I'm gonna go be by myself
for, for about, you know,
Speaker:a little while to get some
fresh air or whatever, but,
Speaker:'cause I can't take it, you know? So yeah.
Speaker:- Pauline, just curious,
- Just curious. Learning.
Speaker:- Yeah. Just curious, Pauline, did you,
Speaker:do you feel like when you
Speaker:started expressing yourself
more fully as a woman, that some
Speaker:of that socializing got easier?
Speaker:- Y yeah, because because I I,
Speaker:I went to a therapist once, right?
Speaker:A transgender therapist
a long, long time ago.
Speaker:And he, he gave me a really good analogy
Speaker:that I like to use once in a while.
Speaker:I would use it all the time.
Speaker:You know, I told him I
was transgender, I said,
Speaker:or Crossdressing, whatever.
Speaker:And I said, you know, when
I would get dressed up,
Speaker:I would be relaxed, my
brain would be calmed down
Speaker:with my dad 'cause it would be as one.
Speaker:And I said, I can, I can
go out and buy dresses
Speaker:and buy all this stuff,
Speaker:but then a month later I'm
gonna be throwing it all away
Speaker:and buy new stuff, you know?
Speaker:And he said to me, he said,
he said, he said, he said,
Speaker:who you are is in your
DNA as part of your gene
Speaker:as part of who you are.
Speaker:And I kind of, you know,
took that for granted.
Speaker:And I said, he's right.
It's part of who I am.
Speaker:I'm not gonna, I can't,
can't change the brain,
Speaker:so I gotta change the body
to match the brain, you know?
Speaker:And I kind of figured that
out, you know, it's like, okay.
Speaker:And after I started getting
dressed up more, my brain kind
Speaker:of like relaxed and I wasn't
as nervous and tensed up
Speaker:and going like, oh my
God, what am I doing?
Speaker:You know? And it just made
me feel better, you know?
Speaker:So, you know, but I had to
learn on my own, you know,
Speaker:there was, there was nobody
that, that to show me how to,
Speaker:you know, like, like how
to buy certain things.
Speaker:I'm going like, I don't know,
you know, like, like I went
Speaker:to a friend of mine, I said, how do,
Speaker:how do I get a, how do I get a bra?
Speaker:Where do I go? Where do, what do I do?
Speaker:And she said, I'll, I'll take you out.
Speaker:So she took me a brush off
Speaker:'cause she wanted to help me, you know,
Speaker:but I didn't have anybody else
to help me, you know, I said,
Speaker:I, I get to know these things, you know?
Speaker:- Perfect. Perfect. So,
well, thank you so much.
Speaker:This was, this was beyond
expectations from both of you.
Speaker:I really, really appreciate you
appalling helping me co-host
Speaker:and Lindsay as always, just
from start to finish, you were
Speaker:so terrific advising this issue.
Speaker:I just really wanna
thank you for that and,
Speaker:and I hope we'll stay in
touch and come back sometime
Speaker:and give us an update
on, on both of your work.
Speaker:- Thank you. Yeah, so
much. It was my pleasure.
Speaker:- Thanks
- For joining the conversation.
Speaker:If you'd like to reproduce all
Speaker:or part of this podcast,
Speaker:please email ici PUB at.edu.
Speaker:- Our show is Co-produced
at the University
Speaker:of Minnesota's Institute
on community integration
Speaker:by impact managing editor Janet Stewart
Speaker:and ICI media producer Pete McCaulay.
Speaker:Skyler Mahi Love is our editor.
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Burkhart and Sarah Curtner.
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