Episode 4
Sexuality: Pauline and Oscar
Pauline Bosma, founder of the Rainbow Support Groups of Massachusetts, and Oscar Hughes, then a Boston University doctoral candidate, share how they worked with others to create a resource guide for understanding the lives of people with intellectual and developmental disabilities who are also part of the LGBTQ+ community.
View their article here
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Transcript
- 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 Earth.
Speaker:Welcome everybody.
Speaker:Today we're talking with Pauline Bosma
Speaker:and Oscar Hughes, two of
the creators of our lives.
Speaker:Our choices are rights,
Speaker:an online guidebook from the
Rainbow Support Group that is
Speaker:by and for people with intellectual and
Speaker:or developmental disabilities
Speaker:who are also in the lgbtq plus community.
Speaker:Pauline, can you get us started here
Speaker:and tell us a little bit about how, how
Speaker:and why you founded the support group?
Speaker:And then I'll ask a
couple of other questions.
Speaker:But how, in the, take us all the way back.
Speaker:How did you first get the idea
Speaker:to even start the Rainbow Support Group?
Speaker:- Well, I wanted, I came on
as trans a long time ago,
Speaker:and I wanted a, a safe
environment for people
Speaker:with disability to go and
talk about their issues.
Speaker:Because when you, when you go to a regular
Speaker:LGBT group or anything like that,
Speaker:and anybody that knows is in
the regular LGBT community,
Speaker:the gays are in one corner
Speaker:of the lesbians are in another corner,
Speaker:or the trans people are in another corner
Speaker:and the, you know, you know,
they're just not together.
Speaker:And I kinda like said, Hey,
I wanna like get together
Speaker:and talk about the issues
that we all, we all,
Speaker:we all are having the same
issues in our own same way.
Speaker:But now I have eight support groups
Speaker:and I have groups in other
states, you know, like, like
Speaker:New York, you know, New
Hampshire, Rhode Island,
Speaker:Vermont, you know, Connecticut,
Colorado, California,
Speaker:Portland, Oregon, Canada.
Speaker:And I even got a group in Australia.
Speaker:So we're, we're connecting
the world gradually. Little by
Speaker:- Little.
Speaker:That's a, that's amazing.
Speaker:And I also wanna bring in
your colleague Oscar Hughes.
Speaker:Oscar actually just, I believe,
Speaker:completed his doctoral work
in special education at
Speaker:Boston Universities.
Speaker:Wheelock College of Education
Speaker:and Human Development in Boston.
Speaker:Welcome, Oscar.
Speaker:- Yes. Hi. Thank you.
Speaker:- It's so great to have you
here. And is that right?
Speaker:Did you, I think you just completed your,
Speaker:your studies, is that correct?
Speaker:- I did, yes.
Speaker:Pauline and I actually did
a research study together.
Speaker:That study was the basis
Speaker:of the Rainbow guidebook
we're gonna talk to you about.
Speaker:And then I also defended my
dissertation just two weeks ago.
Speaker:- How did this guidebook
really get started?
Speaker:Oscar, you said that it was part of your,
Speaker:your dissertation work.
Speaker:What, what was the conversation early on?
Speaker:- Do you want me to hit that one?
Speaker:- Yeah, yeah, you start us off, Pauline.
Speaker:- So I always wanted,
like, the biggest thing
Speaker:for me is overall education in general.
Speaker:You know, just like I wanted
to have something that
Speaker:people can learn something
about L-G-B-T-I-D-D,
Speaker:but also learn about other
things about sexuality, gender,
Speaker:or healthy relationships, stuff like that.
Speaker:And, you know, while Oscar
was doing the study, you know,
Speaker:the research study that, that
he did with my dad, we kind
Speaker:of like, you know, heard these stories
Speaker:and I, I asked a very important question.
Speaker:Like, the question was how can we help?
Speaker:- Oh,
- You know, and what,
Speaker:- What do you mean by that?
Speaker:When you, how can we help?
Speaker:What what, what was behind that question?
Speaker:What did you mean by that? It
Speaker:- Was just the way, the
wor that, that the, that
Speaker:that when Oscar would, would
read some of the stories
Speaker:that he got from the, from the research.
Speaker:'cause he, he researched,
I think it was like
Speaker:22, 25 people give or
take across the country.
Speaker:There was, and he asked him
different questions, you know,
Speaker:like what kind of,
hypothetically what kind
Speaker:of support do you, would you like
Speaker:to get if you couldn't get
support for being LGBT and IDD?
Speaker:What, what, what do you wish
you had? What do you want?
Speaker:What, what would you like to do better?
Speaker:And with like that, and those
are some of the questions
Speaker:that we wanted, like more
education, more support,
Speaker:and we wanted to learn something more in
Speaker:school and stuff like that.
Speaker:And we wanted support from
our family and our friends
Speaker:and stuff like that.
Speaker:So that's where the words
like, how can we help?
Speaker:What can we do? And IG
when, you know, it was like,
Speaker:you know, kinda like, it was
spit balling from my head
Speaker:that we should do some
kind of guide or something.
Speaker:- That's awesome. And
it, so in your first,
Speaker:when you first had some of these ideas
Speaker:that you were talking about, did you,
Speaker:were you envisioning then
something that was talking
Speaker:to the IDD community, the people
Speaker:with disabilities directly
about their lives?
Speaker:Or was it more about
Speaker:how you can help others
to understand you better?
Speaker:- I think it was a little bit of both.
Speaker:I just want, you know,
the main thing is I wanted
Speaker:to give people a chance to
understand that, you know, like
Speaker:being LGBT and being IDD is hard enough
Speaker:and we're trying to go through it
Speaker:and we, you know, we
have different problems.
Speaker:We, we go through, you know,
like I never learn how to read
Speaker:or write so I can't read
or I can't write to,
Speaker:but that doesn't stop me from
where my brain, you know,
Speaker:you know, develop differently
where I can think of ideas
Speaker:and think of things that is
normally a bit differently.
Speaker:And I, and that's what I did, is I,
Speaker:I learned a different format,
you know, so, you know,
Speaker:but I, I understand it, you know, so.
Speaker:- That's awesome. That's awesome.
Speaker:Oscar, can you take us through
your research with the,
Speaker:with the group and then how
Speaker:that developed into the guidebook?
Speaker:- Sure. Yeah. It started
Speaker:with the question Pauline
mentioned, she was asking,
Speaker:how can we help, how can
we support this community?
Speaker:And I happened to be, I was
working as her assistant
Speaker:and I was also a PhD student,
Speaker:and I just said, let's do a
research study about that.
Speaker:So we agreed
Speaker:that we would gather some
more people on the team,
Speaker:and I conducted some interviews,
Speaker:and then we met as a research team.
Speaker:We looked at the themes
from the interviews,
Speaker:what were people struggling with,
Speaker:what were the supports that
people were looking for?
Speaker:And we just started brainstorming, well,
Speaker:what can we do about this?
Speaker:So trying to answer Pauline's original
Speaker:question, what would be helpful?
Speaker:And Pauline always had
this idea of wanting
Speaker:to create this guidebook for supporters.
Speaker:And the team was on board with that.
Speaker:And a lot of the findings
from our interviews,
Speaker:people said there needs
to be more visibility,
Speaker:more understanding, more
education about their community.
Speaker:And so we started just writing a guidebook
Speaker:chapter by chapter.
Speaker:We would meet on Zoom and
go through the findings
Speaker:and the quotes, and put
together the information
Speaker:that we had gathered into
something we thought supporters
Speaker:and self-advocates
would, would wanna read.
Speaker:- You know, there's a lot of
talk in the field right now
Speaker:about participatory research,
how important it is,
Speaker:nothing about us without
us and, and all of that.
Speaker:And, you know, there are a lot
of researchers there trying
Speaker:to bring meaningful voices of people
Speaker:with disabilities into their work
Speaker:here in this particular
project, it seems like that is
Speaker:even more crucial, right?
Speaker:What, how do you feel about
this whole trend in research
Speaker:and, and were you thinking as
you went into this project,
Speaker:you don't wanna just give
that lip service, you really,
Speaker:you really wanna be meaningful about those
Speaker:participatory influences?
Speaker:- Yeah, absolutely.
Speaker:I mean, I've, I've,
Speaker:the reason I entered this
field special education
Speaker:and also disability advocacy is
Speaker:because I believe that people
Speaker:with disabilities are
experts on their own lives.
Speaker:And they should be the ones who
Speaker:have the most input, the
most power when it comes
Speaker:to research
Speaker:and decision making around
disability and education.
Speaker:So I always wanted to do an
inclusive research project,
Speaker:and Pauline's actually been
on many different inclusive
Speaker:research projects and
done lots of research.
Speaker:So when she asked this question,
Speaker:it just seemed like a great opportunity
Speaker:to work together on something.
Speaker:And especially I think
around gender, sexuality,
Speaker:the lgbtq plus community, right?
Speaker:There's this interaction
of multiple identities,
Speaker:there's a lot of opportunity
for researchers to get it wrong
Speaker:and not really understand
Speaker:what people's lives are really like.
Speaker:So we need experts who
have a lived experience
Speaker:to guide that research.
Speaker:- And that's a perfect entry into my next
Speaker:question for Pauline.
Speaker:You, in your article you
wrote that the group,
Speaker:as you were working on, you know,
Speaker:in the group on this
project, you heard a lot
Speaker:of stories from people with disabilities
Speaker:who have been really rejected
Speaker:by their families when they started
Speaker:to express their sexuality
and their gender.
Speaker:And I know that you've had some
Speaker:of your own personal
experiences with this.
Speaker:What was that like for you?
Speaker:- For me personally, it
was a, it was a bit re
Speaker:was a bit, you know,
reminded, you know, like when,
Speaker:when my mother found out,
Speaker:and it was like that she
kind of like, you know,
Speaker:this was early on, you
know, she kind of found out,
Speaker:she looked at me and she said,
Speaker:you wanna make an ugly
looking woman, you know,
Speaker:but then my mother's, you
know, when she was dying,
Speaker:you know, she looked at me
Speaker:and she said, I love you
for who you are regardless.
Speaker:So that made me feel better.
Speaker:Not only that, my mother loved
me for me and with my dad
Speaker:and my, my siblings, you
know, I'm the youngest of five
Speaker:and my siblings after my
mother died dis disowned
Speaker:me and everything like that.
Speaker:So I didn't really, I haven't
talked to my siblings in about
Speaker:19, 18 years, 19, 18
years, something like that.
Speaker:But I got a lot of chosen
family, you know, like
Speaker:Oscar and I got my wonderful
support agency that supports me
Speaker:and with my dad, and they've
been a big ally for me
Speaker:and with like that.
Speaker:So I got a lot of support
people that love me
Speaker:and with my dad, and that's
what keeps me going is that I
Speaker:have this family that I, that I,
Speaker:that chose me and I chose them.
Speaker:So, and that makes me feel good.
Speaker:And knowing, you know,
Speaker:like when I hear the stories about people
Speaker:and everything like that, it
makes my heart go out to 'em.
Speaker:And it makes me wanna,
you know, like, you know,
Speaker:help them more and educate them more.
Speaker:And, you know, let, don't you
know, don't worry, you're not,
Speaker:you're not going through
this alone when you're going,
Speaker:you might be going through
it in a different format,
Speaker:but you're not going through it alone.
Speaker:We're all, we're all here
to support each other.
Speaker:- That's fabulous. And you were
Speaker:actually getting ready for the show.
Speaker:You were telling me
some stories of some of
Speaker:that work you've done going
to different conferences and,
Speaker:and different opportunities
to kind of tell this story.
Speaker:And you shared with me, you
know, one, one anecdote.
Speaker:I remember when you were
setting up for a show
Speaker:or you had someone kind
of come by the table and,
Speaker:and ask a question.
Speaker:Can you share that story with me?
Speaker:- I'm trying to think of what the
Speaker:- Question.
Speaker:It was the one when someone
came up to a table and,
Speaker:and you had a condom on the table.
Speaker:- Oh yeah, yeah, yeah. It was,
it was a, so I was a group
Speaker:and with my dad and I had
a, had a bowl of condom,
Speaker:not the self advocacy conference.
Speaker:And a self advocate came up to me
Speaker:and asked me, you know, what's this?
Speaker:And I said, that's a condom
to have safe sex with.
Speaker:And when I asked had, when I
said that the Audi, the people
Speaker:around my table, Lily went dead silence.
Speaker:And then the guy said, well,
I don't know how to use one.
Speaker:And I said, that would be
a really good workshop.
Speaker:And then it went even more deadly science,
Speaker:and I got the star from
everybody with in the room
Speaker:that I was in because I was at my table
Speaker:and I'm just, people are
just staring me down,
Speaker:like I said, the wrong thing.
Speaker:So, I mean, and that made
me realize that, that,
Speaker:you know, when you are, when
you're working on something,
Speaker:you gotta, you, you gotta realize
Speaker:that there are some things
you can do that, that the
Speaker:audience is ready for.
Speaker:And then the other thing, you
gotta hold back a little bit
Speaker:and gradually bring it in,
Speaker:but you can't bring it in all at once
Speaker:because people are gonna be overwhelmed.
Speaker:And I've been gradually
bringing in the words, you know,
Speaker:gender or sexuality and stuff like that,
Speaker:but I haven't really
totally like, pushed it on
Speaker:that more saying like, Hey,
you, you doesn't know this.
Speaker:I'm saying like, Hey, we're
gonna do this gradually,
Speaker:a little bit outta time, a little bit,
Speaker:learning a little bit, you know, so,
Speaker:- And there you've really hit
on an issue that crosses in,
Speaker:in and out of disability, right?
Speaker:Because as Americans,
we have kind of a rep
Speaker:of being a little, I don't know,
Speaker:old fashioned or a
little reserved about all
Speaker:of these topics, whether
it it's intersects
Speaker:with disability or not.
Speaker:Oscar, is that a challenge in doing some
Speaker:of this work from your perspective?
Speaker:- I, I think it's
changing, it's improving.
Speaker:We have people like Pauline who are
Speaker:getting these conversations
started and keeping them going.
Speaker:I certainly found when I was
a special education teacher
Speaker:that sexuality education
was really limited.
Speaker:Students. I had students with
disabilities whose gender
Speaker:or sexual ident was
outside of the expectations
Speaker:or the heterosexual norms.
Speaker:And that was really difficult for parents
Speaker:and teachers to wrap their
head around that students
Speaker:with disabilities could
be lgbtq plus as well.
Speaker:And fortunately in this research,
Speaker:we're here in Massachusetts
Speaker:and Pauline has her rainbow groups which
Speaker:have a lot of support.
Speaker:So it's been really positive
to connect with a community
Speaker:of folks who are also
interested in this work
Speaker:and willing to have these conversations.
Speaker:But we still need to expand
that and provide more support
Speaker:and more education on gender
and sexuality for sure.
Speaker:- Well, and that's just it, you know, the,
Speaker:the Rainbow Guidebook is fantastic
Speaker:that we had in the magazine,
a few other examples of,
Speaker:of programs that are doing
a lot of work in this area.
Speaker:And so, you know,
Speaker:the one thing we don't wanna
do is create this impression
Speaker:that there's just a ton
of resources out there
Speaker:because as you point out, you know, a lot
Speaker:of states are curtailing a
sexual sexuality education in
Speaker:general, not just L-G-B-T-Q or
for people with disabilities.
Speaker:And so there is a dearth of this, correct?
Speaker:- Yes, for sure. It's a, it's a,
Speaker:it's still a taboo topic unfortunately.
Speaker:And I think we're just seeing now more
Speaker:and more people who are
willing to even consider
Speaker:what does it mean to support
gender and sexual expression.
Speaker:We were just at a conference last week
Speaker:and there were a few sessions
Speaker:and a few people who are really
passionate about this topic
Speaker:and trying to do this work,
but I think it's really new
Speaker:and definitely there's a lot more to do.
Speaker:- And Pauline was actually mentioning,
Speaker:I think you're talking about
the TASH Conference, is
Speaker:that right Pauline?
Speaker:What, what is the Tash conference and,
Speaker:and how did it intersect with some
Speaker:of the work that you've done?
Speaker:- People that are, you
know, like self-advocates
Speaker:and they have a disability
that are at that call,
Speaker:but it's mainly a lot more professionals.
Speaker:I mean, Oscar can give more
detail about it that I can.
Speaker:- And, and did you, did you
have a booth at the conference
Speaker:or did you talk to people
about the, the guidebook there?
Speaker:- We, we did both.
Speaker:We talked about the guidebook
and we also had a table,
Speaker:and then we did a workshop.
Speaker:What was our first workshop
on? I forgot again.
Speaker:- Yeah, Pauline and I,
Speaker:and Nora, the third author on
the article, had two sessions.
Speaker:The first one was about scenarios on how
Speaker:to support gender and
sexual self-determination.
Speaker:So Pauline and Nora had
examples of real life scenarios
Speaker:where people with disabilities
were denied their gender
Speaker:or sexual self-expression.
Speaker:And we asked the audience,
you know, what are some ways
Speaker:that we, we could better
promote people to express
Speaker:who they are and support
them to express who they are.
Speaker:We took a lot of notes on
people's ideas about that,
Speaker:that had a great turnout.
Speaker:- Can you gimme, can you
gimme a for instance on that?
Speaker:What, what were some
of the examples of, of
Speaker:how their self-determination
had been impacted?
Speaker:- Sure, yeah. I think one
of the scenarios that was
Speaker:a person, and,
Speaker:and this is based on a true
story of someone we heard from,
Speaker:they lived at a group home and
they wanted to wear dresses,
Speaker:but their staff said, oh,
you're a man, so you have
Speaker:to wear men's clothes and would
just go to the men's section
Speaker:and buy the men's clothes.
Speaker:And so we asked, well, how
could this person be supported
Speaker:to wear what they wanna wear
and express who they are?
Speaker:People shared a lot of examples.
Speaker:One was just arguing that
people should be able to choose
Speaker:what they wear and to pick out
the clothes that they wear.
Speaker:Some people felt that this
person should have new staff,
Speaker:staff who are more
supportive and understanding.
Speaker:Pauline talked about, you know,
Speaker:if there was a human rights
officer, you could report this
Speaker:as a violation of your human rights.
Speaker:So just thinking through,
when these situations come up,
Speaker:how can we advocate for
people to be who they are?
Speaker:- Pauline, in your own experience, I know,
Speaker:I know you had some negative
feedback from your immediate
Speaker:family, but as you started
to more fully express
Speaker:who you were as a woman, were there,
Speaker:were there other critical moments,
Speaker:key times when people either, you know,
Speaker:either denied support to you
Speaker:or gave you support that,
that helped you in making
Speaker:that decision to, to
evolve more fully into
Speaker:who you really were?
Speaker:- Well, I mean, when I first,
in the state of Massachusetts,
Speaker:we, we have a, we have a state agency
Speaker:that's called the Department
of Developmental Service
Speaker:with service, which
services all the people
Speaker:with disability in the
state of Massachusetts
Speaker:and my local office
Speaker:and everything my, that
I told them what I was,
Speaker:and I, with my that, I mean,
Speaker:they've known me for a long time.
Speaker:I told them what I was,
and with my dad and they,
Speaker:and that
Speaker:and the, the, the, the
area director and the boss
Speaker:and everyth, my dad and my,
my statewide support person
Speaker:said, said, said, well,
we, we wanna know about it,
Speaker:but technically we don't
wanna know about it.
Speaker:So they're basically saying
like, keep it in the closet,
Speaker:but don't open the door yet.
Speaker:And I looked at, I said, I
said, door's already open
Speaker:and I'm gonna put it.
Speaker:I know.
Speaker:- So that was your first response to that.
Speaker:You, you, by that point,
you had enough wherewithal
Speaker:or enough of, of your own
confidence to sort of laugh at
Speaker:that and, and,
Speaker:and realize that that wasn't something
Speaker:that was gonna hold you back?
Speaker:- No, because I mean, I mean, it's, it's,
Speaker:to me it is just, it's just
a, it's just a little thing
Speaker:that I did just to relieve
my, my stress in my brain.
Speaker:It's like, it's like, there
was, there was like a, a a,
Speaker:a story where I was working for
a part diverse small agency.
Speaker:And I was there and I was,
Speaker:and I was in my, I was
in my little, you know,
Speaker:'cause I was a, I was a custodian,
Speaker:so I would clean all the
officers and like that.
Speaker:So I was, I was in my little, you know,
Speaker:closet, right?
Speaker:And, and my supervisor comes
in and he goes and he goes
Speaker:and he goes, he goes, can
you, can you, can you,
Speaker:can you get out of the closet?
Speaker:And I looked at him and
I jokingly, he said,
Speaker:I'm already out of the closet.
Speaker:And he just looked at me
Speaker:and he just said, okay, I'm walking away.
Speaker:I'm not saying the today.
Speaker:And then, you know, we, he got the joke,
Speaker:but I'm going like, okay, bye.
Speaker:See you later. But he got the joke
Speaker:because he was telling me
to get out of the closet.
Speaker:I said, well, I'm already
out of the closet.
Speaker:I mean, hypothetically.
Speaker:And I'm going like, well, I
gotta make a joke out of it
Speaker:because, you know, but I
mean, it was funny to me.
Speaker:'cause I'm just like,
yeah, well, you know,
Speaker:so you really can't stop.
But, you know, so there
Speaker:- You go.
Speaker:That's, that's awesome.
Speaker:And so you were sharing a
little earlier you were sharing
Speaker:some numbers about the, the guidebook.
Speaker:Can you tell me a little about that?
Speaker:- Yeah, we're, you know,
Speaker:we launched the guidebook
about seven, seven months ago.
Speaker:And right now we're, we're
over around th 30,000 people
Speaker:that have looked at the guidebook.
Speaker:And you know, when, you know,
Speaker:and we have some like,
Speaker:couple colleges using it
in their college courses.
Speaker:We have a group and,
Speaker:and I think, do we have
an, do we have a school,
Speaker:like an elementary school
Speaker:or a middle school using it or something?
Speaker:I think,
Speaker:- Yeah, we've started getting
some messages from people
Speaker:sharing how they've used it.
Speaker:One of them re the most recent
was a school psychologist,
Speaker:I think at a high school in New York
Speaker:who said she has some
students she works with
Speaker:who have disabilities who are L-G-B-T-Q.
Speaker:And they sat down and looked
at the guidebook together
Speaker:and talked about students'
goals and identity.
Speaker:And it's cool to hear
how people are using it.
Speaker:- That's really critical
Speaker:because a, several articles
in the issue talked about how,
Speaker:how few resources really
are available in schools.
Speaker:So how did you crack that market, Oscar,
Speaker:did you have a dissemination plan?
Speaker:What, how did you do that?
Speaker:- Well, we're certainly still
trying to get it out there.
Speaker:That's one of the reasons we
wrote this magazine article
Speaker:and came on this podcast,
Speaker:but we just started by sharing it
Speaker:with some list serves I happen
to be on as a PhD student.
Speaker:We posted it on a website for
the rainbow support groups.
Speaker:We've shared it on social
media as best we could.
Speaker:So we're still trying to figure out
Speaker:how best to get it out there.
Speaker:But I think a few
Speaker:state agencies
Speaker:and service providers have
shared it with their staff.
Speaker:That's a big way that
it's gotten out there.
Speaker:The state of Rhode Island, California,
Speaker:a couple different state developmental
Speaker:disability services agencies
have shared it with their staff
Speaker:or on their website, things like that.
Speaker:- And I wanna ask each of you,
Speaker:before we close, is there one
moment that really stands out
Speaker:for you in this, in this
work that, wow, that's the,
Speaker:the take home for you
Speaker:- In terms of the research project?
Speaker:There was a moment on the team
Speaker:where we were talking about some struggles
Speaker:that people were going through
Speaker:and the hardships of the participants.
Speaker:And it was really kind
of bringing us down.
Speaker:And so we switched and looked at how,
Speaker:what did people say they were proud of
Speaker:and what made them happy.
Speaker:And we ended up putting a lot
of that data in the guidebook.
Speaker:Why are people happy to be lgbtq plus?
Speaker:What do they like about themselves?
Speaker:Where do they find their joy?
Speaker:And I think we really need that right now.
Speaker:There's so much negative
news and people do struggle,
Speaker:but people can also be happy and proud
Speaker:and live a wonderful LGBTQ plus life,
Speaker:even when it's hard, it can be wonderful.
Speaker:So I think sharing those stories
of joy is really powerful
Speaker:and I'm really glad that
we were able to do that.
Speaker:- What a great thought, because
certainly it's so important
Speaker:to bring out discrimination
Speaker:and, you know, the things that
we have to call attention to,
Speaker:but, but part of that is the joy, right?
Speaker:Pauline, how about for you?
Speaker:Was there a moment as you
were going through all of this
Speaker:with your colleagues, that was
an aha moment about, oh yeah,
Speaker:this part of it is gonna be
the most useful to people
Speaker:with disabilities,
Speaker:or this is gonna really
resonate with people
Speaker:who are supporting people with disability.
Speaker:Was there one part of it that
just really you thought, aha,
Speaker:this is, this is good stuff?
Speaker:- Well, I mean, when we, when
we, when we got it all done,
Speaker:that, that was a really
good moment with my dad.
Speaker:And another really good moment
Speaker:for me was when
Speaker:Oscar put in his, in his dissertation
Speaker:to get his doctor's degree.
Speaker:And with my dad, you
know, I I made a, like,
Speaker:I like to put things
in, in, in, in respect
Speaker:and real, and I was like that.
Speaker:And you know, and I, and I,
Speaker:and I said, you know, I
said, you know, my, you know,
Speaker:when I, I started my, my
Rainbow support group, you know,
Speaker:19 years ago.
Speaker:Next year will be my 20th
anniversary with my dad.
Speaker:I said, I started not 19 years ago, and I,
Speaker:and I looked at, you know,
where I'm sitting there,
Speaker:I'm talking to other people in the chair
Speaker:and I said, you know, my,
my baby is off the college
Speaker:and now my baby has got a doctor's degree
Speaker:and going out in the world
Speaker:because she's literally like
living within the, the system.
Speaker:And I, and it just, you know,
it brought a tear to my eye
Speaker:that, you know, like, like
I'm, when I leave this earth,
Speaker:there's, there's a, there's
there's a part of me
Speaker:that's gonna be left behind
for a long, long time
Speaker:for many people use.
Speaker:And that is just so
happy for me to have that
Speaker:and that to be like that there,
Speaker:that's just like really proud
of me is like, I'm really
Speaker:happy for everything that's,
that's been coming true
Speaker:and been happening with my dad. So.
Speaker:- Wow, that's, that's amazing.
Speaker:And I, I just love that
you shared that with us
Speaker:because, you know, that's one
Speaker:of the things we talked
early on about is, you know,
Speaker:the whole nothing about us without us and,
Speaker:and how do you really get at
research that's meaningful?
Speaker:And boy, you can't do any
better than what you just said.
Speaker:Right. Any,
Speaker:anything I haven't asked
about recollections from the
Speaker:experience either of writing
the article for the magazine
Speaker:or in putting the guidebook together?
Speaker:Anything we haven't
touched on? Oscar from you?
Speaker:And then we'll finish with Pauline.
Speaker:- Just add that if you're doing research
Speaker:or any kind of project
Speaker:or programming that's trying to support
Speaker:or to serve people with
disabilities, people
Speaker:with disabilities have to be on the team
Speaker:collecting the data, asking the questions,
Speaker:planning the programming, whatever it is,
Speaker:we need their insight.
Speaker:If we're gonna try to do the right thing
Speaker:and do it well, we need their insight.
Speaker:- Awesome. And how about for you, Pauline?
Speaker:Anything that we haven't talked about
Speaker:that has been on your
mind with all of this?
Speaker:- I think I'm just looking
forward to the, you know,
Speaker:like the future and see
what's, what's gonna happen
Speaker:with the next, you know,
things with the guide book,
Speaker:but also where, you know, like me
Speaker:and Oscar are gonna be starting
our own training company
Speaker:sometime next year or like that.
Speaker:So that should be really
interesting to see how
Speaker:that's gonna go when it's, you
know, we should be, be good.
Speaker:But, you know, we're gonna,
Speaker:hopefully we're gonna add
some new things to the
Speaker:guide booklet as we go along.
Speaker:- That's really ex that's really exciting
Speaker:and I can't wait to see
where you take this effort
Speaker:because it's gonna be really
exciting to see, you know,
Speaker:how this evolves and, and
really where it goes from here.
Speaker:Alright, thanks again. Take care. Bye.
Speaker:- Thank
- You. Bye-Bye.
Speaker:Thanks for joining the conversation.
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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.
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Burkhart and Sarah Curtner.
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