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.

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- 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 Earth.

Welcome everybody.

Today we're talking with Pauline Bosma

and Oscar Hughes, two of

the creators of our lives.

Our choices are rights,

an online guidebook from the

Rainbow Support Group that is

by and for people with intellectual and

or developmental disabilities

who are also in the lgbtq plus community.

Pauline, can you get us started here

and tell us a little bit about how, how

and why you founded the support group?

And then I'll ask a

couple of other questions.

But how, in the, take us all the way back.

How did you first get the idea

to even start the Rainbow Support Group?

- Well, I wanted, I came on

as trans a long time ago,

and I wanted a, a safe

environment for people

with disability to go and

talk about their issues.

Because when you, when you go to a regular

LGBT group or anything like that,

and anybody that knows is in

the regular LGBT community,

the gays are in one corner

of the lesbians are in another corner,

or the trans people are in another corner

and the, you know, you know,

they're just not together.

And I kinda like said, Hey,

I wanna like get together

and talk about the issues

that we all, we all,

we all are having the same

issues in our own same way.

But now I have eight support groups

and I have groups in other

states, you know, like, like

New York, you know, New

Hampshire, Rhode Island,

Vermont, you know, Connecticut,

Colorado, California,

Portland, Oregon, Canada.

And I even got a group in Australia.

So we're, we're connecting

the world gradually. Little by

- Little.

That's a, that's amazing.

And I also wanna bring in

your colleague Oscar Hughes.

Oscar actually just, I believe,

completed his doctoral work

in special education at

Boston Universities.

Wheelock College of Education

and Human Development in Boston.

Welcome, Oscar.

- Yes. Hi. Thank you.

- It's so great to have you

here. And is that right?

Did you, I think you just completed your,

your studies, is that correct?

- I did, yes.

Pauline and I actually did

a research study together.

That study was the basis

of the Rainbow guidebook

we're gonna talk to you about.

And then I also defended my

dissertation just two weeks ago.

- How did this guidebook

really get started?

Oscar, you said that it was part of your,

your dissertation work.

What, what was the conversation early on?

- Do you want me to hit that one?

- Yeah, yeah, you start us off, Pauline.

- So I always wanted,

like, the biggest thing

for me is overall education in general.

You know, just like I wanted

to have something that

people can learn something

about L-G-B-T-I-D-D,

but also learn about other

things about sexuality, gender,

or healthy relationships, stuff like that.

And, you know, while Oscar

was doing the study, you know,

the research study that, that

he did with my dad, we kind

of like, you know, heard these stories

and I, I asked a very important question.

Like, the question was how can we help?

- Oh,

- You know, and what,

- What do you mean by that?

When you, how can we help?

What what, what was behind that question?

What did you mean by that? It

- Was just the way, the

wor that, that the, that

that when Oscar would, would

read some of the stories

that he got from the, from the research.

'cause he, he researched,

I think it was like

22, 25 people give or

take across the country.

There was, and he asked him

different questions, you know,

like what kind of,

hypothetically what kind

of support do you, would you like

to get if you couldn't get

support for being LGBT and IDD?

What, what, what do you wish

you had? What do you want?

What, what would you like to do better?

And with like that, and those

are some of the questions

that we wanted, like more

education, more support,

and we wanted to learn something more in

school and stuff like that.

And we wanted support from

our family and our friends

and stuff like that.

So that's where the words

like, how can we help?

What can we do? And IG

when, you know, it was like,

you know, kinda like, it was

spit balling from my head

that we should do some

kind of guide or something.

- That's awesome. And

it, so in your first,

when you first had some of these ideas

that you were talking about, did you,

were you envisioning then

something that was talking

to the IDD community, the people

with disabilities directly

about their lives?

Or was it more about

how you can help others

to understand you better?

- I think it was a little bit of both.

I just want, you know,

the main thing is I wanted

to give people a chance to

understand that, you know, like

being LGBT and being IDD is hard enough

and we're trying to go through it

and we, you know, we

have different problems.

We, we go through, you know,

like I never learn how to read

or write so I can't read

or I can't write to,

but that doesn't stop me from

where my brain, you know,

you know, develop differently

where I can think of ideas

and think of things that is

normally a bit differently.

And I, and that's what I did, is I,

I learned a different format,

you know, so, you know,

but I, I understand it, you know, so.

- That's awesome. That's awesome.

Oscar, can you take us through

your research with the,

with the group and then how

that developed into the guidebook?

- Sure. Yeah. It started

with the question Pauline

mentioned, she was asking,

how can we help, how can

we support this community?

And I happened to be, I was

working as her assistant

and I was also a PhD student,

and I just said, let's do a

research study about that.

So we agreed

that we would gather some

more people on the team,

and I conducted some interviews,

and then we met as a research team.

We looked at the themes

from the interviews,

what were people struggling with,

what were the supports that

people were looking for?

And we just started brainstorming, well,

what can we do about this?

So trying to answer Pauline's original

question, what would be helpful?

And Pauline always had

this idea of wanting

to create this guidebook for supporters.

And the team was on board with that.

And a lot of the findings

from our interviews,

people said there needs

to be more visibility,

more understanding, more

education about their community.

And so we started just writing a guidebook

chapter by chapter.

We would meet on Zoom and

go through the findings

and the quotes, and put

together the information

that we had gathered into

something we thought supporters

and self-advocates

would, would wanna read.

- You know, there's a lot of

talk in the field right now

about participatory research,

how important it is,

nothing about us without

us and, and all of that.

And, you know, there are a lot

of researchers there trying

to bring meaningful voices of people

with disabilities into their work

here in this particular

project, it seems like that is

even more crucial, right?

What, how do you feel about

this whole trend in research

and, and were you thinking as

you went into this project,

you don't wanna just give

that lip service, you really,

you really wanna be meaningful about those

participatory influences?

- Yeah, absolutely.

I mean, I've, I've,

the reason I entered this

field special education

and also disability advocacy is

because I believe that people

with disabilities are

experts on their own lives.

And they should be the ones who

have the most input, the

most power when it comes

to research

and decision making around

disability and education.

So I always wanted to do an

inclusive research project,

and Pauline's actually been

on many different inclusive

research projects and

done lots of research.

So when she asked this question,

it just seemed like a great opportunity

to work together on something.

And especially I think

around gender, sexuality,

the lgbtq plus community, right?

There's this interaction

of multiple identities,

there's a lot of opportunity

for researchers to get it wrong

and not really understand

what people's lives are really like.

So we need experts who

have a lived experience

to guide that research.

- And that's a perfect entry into my next

question for Pauline.

You, in your article you

wrote that the group,

as you were working on, you know,

in the group on this

project, you heard a lot

of stories from people with disabilities

who have been really rejected

by their families when they started

to express their sexuality

and their gender.

And I know that you've had some

of your own personal

experiences with this.

What was that like for you?

- For me personally, it

was a, it was a bit re

was a bit, you know,

reminded, you know, like when,

when my mother found out,

and it was like that she

kind of like, you know,

this was early on, you

know, she kind of found out,

she looked at me and she said,

you wanna make an ugly

looking woman, you know,

but then my mother's, you

know, when she was dying,

you know, she looked at me

and she said, I love you

for who you are regardless.

So that made me feel better.

Not only that, my mother loved

me for me and with my dad

and my, my siblings, you

know, I'm the youngest of five

and my siblings after my

mother died dis disowned

me and everything like that.

So I didn't really, I haven't

talked to my siblings in about

19, 18 years, 19, 18

years, something like that.

But I got a lot of chosen

family, you know, like

Oscar and I got my wonderful

support agency that supports me

and with my dad, and they've

been a big ally for me

and with like that.

So I got a lot of support

people that love me

and with my dad, and that's

what keeps me going is that I

have this family that I, that I,

that chose me and I chose them.

So, and that makes me feel good.

And knowing, you know,

like when I hear the stories about people

and everything like that, it

makes my heart go out to 'em.

And it makes me wanna,

you know, like, you know,

help them more and educate them more.

And, you know, let, don't you

know, don't worry, you're not,

you're not going through

this alone when you're going,

you might be going through

it in a different format,

but you're not going through it alone.

We're all, we're all here

to support each other.

- That's fabulous. And you were

actually getting ready for the show.

You were telling me

some stories of some of

that work you've done going

to different conferences and,

and different opportunities

to kind of tell this story.

And you shared with me, you

know, one, one anecdote.

I remember when you were

setting up for a show

or you had someone kind

of come by the table and,

and ask a question.

Can you share that story with me?

- I'm trying to think of what the

- Question.

It was the one when someone

came up to a table and,

and you had a condom on the table.

- Oh yeah, yeah, yeah. It was,

it was a, so I was a group

and with my dad and I had

a, had a bowl of condom,

not the self advocacy conference.

And a self advocate came up to me

and asked me, you know, what's this?

And I said, that's a condom

to have safe sex with.

And when I asked had, when I

said that the Audi, the people

around my table, Lily went dead silence.

And then the guy said, well,

I don't know how to use one.

And I said, that would be

a really good workshop.

And then it went even more deadly science,

and I got the star from

everybody with in the room

that I was in because I was at my table

and I'm just, people are

just staring me down,

like I said, the wrong thing.

So, I mean, and that made

me realize that, that,

you know, when you are, when

you're working on something,

you gotta, you, you gotta realize

that there are some things

you can do that, that the

audience is ready for.

And then the other thing, you

gotta hold back a little bit

and gradually bring it in,

but you can't bring it in all at once

because people are gonna be overwhelmed.

And I've been gradually

bringing in the words, you know,

gender or sexuality and stuff like that,

but I haven't really

totally like, pushed it on

that more saying like, Hey,

you, you doesn't know this.

I'm saying like, Hey, we're

gonna do this gradually,

a little bit outta time, a little bit,

learning a little bit, you know, so,

- And there you've really hit

on an issue that crosses in,

in and out of disability, right?

Because as Americans,

we have kind of a rep

of being a little, I don't know,

old fashioned or a

little reserved about all

of these topics, whether

it it's intersects

with disability or not.

Oscar, is that a challenge in doing some

of this work from your perspective?

- I, I think it's

changing, it's improving.

We have people like Pauline who are

getting these conversations

started and keeping them going.

I certainly found when I was

a special education teacher

that sexuality education

was really limited.

Students. I had students with

disabilities whose gender

or sexual ident was

outside of the expectations

or the heterosexual norms.

And that was really difficult for parents

and teachers to wrap their

head around that students

with disabilities could

be lgbtq plus as well.

And fortunately in this research,

we're here in Massachusetts

and Pauline has her rainbow groups which

have a lot of support.

So it's been really positive

to connect with a community

of folks who are also

interested in this work

and willing to have these conversations.

But we still need to expand

that and provide more support

and more education on gender

and sexuality for sure.

- Well, and that's just it, you know, the,

the Rainbow Guidebook is fantastic

that we had in the magazine,

a few other examples of,

of programs that are doing

a lot of work in this area.

And so, you know,

the one thing we don't wanna

do is create this impression

that there's just a ton

of resources out there

because as you point out, you know, a lot

of states are curtailing a

sexual sexuality education in

general, not just L-G-B-T-Q or

for people with disabilities.

And so there is a dearth of this, correct?

- Yes, for sure. It's a, it's a,

it's still a taboo topic unfortunately.

And I think we're just seeing now more

and more people who are

willing to even consider

what does it mean to support

gender and sexual expression.

We were just at a conference last week

and there were a few sessions

and a few people who are really

passionate about this topic

and trying to do this work,

but I think it's really new

and definitely there's a lot more to do.

- And Pauline was actually mentioning,

I think you're talking about

the TASH Conference, is

that right Pauline?

What, what is the Tash conference and,

and how did it intersect with some

of the work that you've done?

- People that are, you

know, like self-advocates

and they have a disability

that are at that call,

but it's mainly a lot more professionals.

I mean, Oscar can give more

detail about it that I can.

- And, and did you, did you

have a booth at the conference

or did you talk to people

about the, the guidebook there?

- We, we did both.

We talked about the guidebook

and we also had a table,

and then we did a workshop.

What was our first workshop

on? I forgot again.

- Yeah, Pauline and I,

and Nora, the third author on

the article, had two sessions.

The first one was about scenarios on how

to support gender and

sexual self-determination.

So Pauline and Nora had

examples of real life scenarios

where people with disabilities

were denied their gender

or sexual self-expression.

And we asked the audience,

you know, what are some ways

that we, we could better

promote people to express

who they are and support

them to express who they are.

We took a lot of notes on

people's ideas about that,

that had a great turnout.

- Can you gimme, can you

gimme a for instance on that?

What, what were some

of the examples of, of

how their self-determination

had been impacted?

- Sure, yeah. I think one

of the scenarios that was

a person, and,

and this is based on a true

story of someone we heard from,

they lived at a group home and

they wanted to wear dresses,

but their staff said, oh,

you're a man, so you have

to wear men's clothes and would

just go to the men's section

and buy the men's clothes.

And so we asked, well, how

could this person be supported

to wear what they wanna wear

and express who they are?

People shared a lot of examples.

One was just arguing that

people should be able to choose

what they wear and to pick out

the clothes that they wear.

Some people felt that this

person should have new staff,

staff who are more

supportive and understanding.

Pauline talked about, you know,

if there was a human rights

officer, you could report this

as a violation of your human rights.

So just thinking through,

when these situations come up,

how can we advocate for

people to be who they are?

- Pauline, in your own experience, I know,

I know you had some negative

feedback from your immediate

family, but as you started

to more fully express

who you were as a woman, were there,

were there other critical moments,

key times when people either, you know,

either denied support to you

or gave you support that,

that helped you in making

that decision to, to

evolve more fully into

who you really were?

- Well, I mean, when I first,

in the state of Massachusetts,

we, we have a, we have a state agency

that's called the Department

of Developmental Service

with service, which

services all the people

with disability in the

state of Massachusetts

and my local office

and everything my, that

I told them what I was,

and I, with my that, I mean,

they've known me for a long time.

I told them what I was,

and with my dad and they,

and that

and the, the, the, the

area director and the boss

and everyth, my dad and my,

my statewide support person

said, said, said, well,

we, we wanna know about it,

but technically we don't

wanna know about it.

So they're basically saying

like, keep it in the closet,

but don't open the door yet.

And I looked at, I said, I

said, door's already open

and I'm gonna put it.

I know.

- So that was your first response to that.

You, you, by that point,

you had enough wherewithal

or enough of, of your own

confidence to sort of laugh at

that and, and,

and realize that that wasn't something

that was gonna hold you back?

- No, because I mean, I mean, it's, it's,

to me it is just, it's just

a, it's just a little thing

that I did just to relieve

my, my stress in my brain.

It's like, it's like, there

was, there was like a, a a,

a story where I was working for

a part diverse small agency.

And I was there and I was,

and I was in my, I was

in my little, you know,

'cause I was a, I was a custodian,

so I would clean all the

officers and like that.

So I was, I was in my little, you know,

closet, right?

And, and my supervisor comes

in and he goes and he goes

and he goes, he goes, can

you, can you, can you,

can you get out of the closet?

And I looked at him and

I jokingly, he said,

I'm already out of the closet.

And he just looked at me

and he just said, okay, I'm walking away.

I'm not saying the today.

And then, you know, we, he got the joke,

but I'm going like, okay, bye.

See you later. But he got the joke

because he was telling me

to get out of the closet.

I said, well, I'm already

out of the closet.

I mean, hypothetically.

And I'm going like, well, I

gotta make a joke out of it

because, you know, but I

mean, it was funny to me.

'cause I'm just like,

yeah, well, you know,

so you really can't stop.

But, you know, so there

- You go.

That's, that's awesome.

And so you were sharing a

little earlier you were sharing

some numbers about the, the guidebook.

Can you tell me a little about that?

- Yeah, we're, you know,

we launched the guidebook

about seven, seven months ago.

And right now we're, we're

over around th 30,000 people

that have looked at the guidebook.

And you know, when, you know,

and we have some like,

couple colleges using it

in their college courses.

We have a group and,

and I think, do we have

an, do we have a school,

like an elementary school

or a middle school using it or something?

I think,

- Yeah, we've started getting

some messages from people

sharing how they've used it.

One of them re the most recent

was a school psychologist,

I think at a high school in New York

who said she has some

students she works with

who have disabilities who are L-G-B-T-Q.

And they sat down and looked

at the guidebook together

and talked about students'

goals and identity.

And it's cool to hear

how people are using it.

- That's really critical

because a, several articles

in the issue talked about how,

how few resources really

are available in schools.

So how did you crack that market, Oscar,

did you have a dissemination plan?

What, how did you do that?

- Well, we're certainly still

trying to get it out there.

That's one of the reasons we

wrote this magazine article

and came on this podcast,

but we just started by sharing it

with some list serves I happen

to be on as a PhD student.

We posted it on a website for

the rainbow support groups.

We've shared it on social

media as best we could.

So we're still trying to figure out

how best to get it out there.

But I think a few

state agencies

and service providers have

shared it with their staff.

That's a big way that

it's gotten out there.

The state of Rhode Island, California,

a couple different state developmental

disability services agencies

have shared it with their staff

or on their website, things like that.

- And I wanna ask each of you,

before we close, is there one

moment that really stands out

for you in this, in this

work that, wow, that's the,

the take home for you

- In terms of the research project?

There was a moment on the team

where we were talking about some struggles

that people were going through

and the hardships of the participants.

And it was really kind

of bringing us down.

And so we switched and looked at how,

what did people say they were proud of

and what made them happy.

And we ended up putting a lot

of that data in the guidebook.

Why are people happy to be lgbtq plus?

What do they like about themselves?

Where do they find their joy?

And I think we really need that right now.

There's so much negative

news and people do struggle,

but people can also be happy and proud

and live a wonderful LGBTQ plus life,

even when it's hard, it can be wonderful.

So I think sharing those stories

of joy is really powerful

and I'm really glad that

we were able to do that.

- What a great thought, because

certainly it's so important

to bring out discrimination

and, you know, the things that

we have to call attention to,

but, but part of that is the joy, right?

Pauline, how about for you?

Was there a moment as you

were going through all of this

with your colleagues, that was

an aha moment about, oh yeah,

this part of it is gonna be

the most useful to people

with disabilities,

or this is gonna really

resonate with people

who are supporting people with disability.

Was there one part of it that

just really you thought, aha,

this is, this is good stuff?

- Well, I mean, when we, when

we, when we got it all done,

that, that was a really

good moment with my dad.

And another really good moment

for me was when

Oscar put in his, in his dissertation

to get his doctor's degree.

And with my dad, you

know, I I made a, like,

I like to put things

in, in, in, in respect

and real, and I was like that.

And you know, and I, and I,

and I said, you know, I

said, you know, my, you know,

when I, I started my, my

Rainbow support group, you know,

19 years ago.

Next year will be my 20th

anniversary with my dad.

I said, I started not 19 years ago, and I,

and I looked at, you know,

where I'm sitting there,

I'm talking to other people in the chair

and I said, you know, my,

my baby is off the college

and now my baby has got a doctor's degree

and going out in the world

because she's literally like

living within the, the system.

And I, and it just, you know,

it brought a tear to my eye

that, you know, like, like

I'm, when I leave this earth,

there's, there's a, there's

there's a part of me

that's gonna be left behind

for a long, long time

for many people use.

And that is just so

happy for me to have that

and that to be like that there,

that's just like really proud

of me is like, I'm really

happy for everything that's,

that's been coming true

and been happening with my dad. So.

- Wow, that's, that's amazing.

And I, I just love that

you shared that with us

because, you know, that's one

of the things we talked

early on about is, you know,

the whole nothing about us without us and,

and how do you really get at

research that's meaningful?

And boy, you can't do any

better than what you just said.

Right. Any,

anything I haven't asked

about recollections from the

experience either of writing

the article for the magazine

or in putting the guidebook together?

Anything we haven't

touched on? Oscar from you?

And then we'll finish with Pauline.

- Just add that if you're doing research

or any kind of project

or programming that's trying to support

or to serve people with

disabilities, people

with disabilities have to be on the team

collecting the data, asking the questions,

planning the programming, whatever it is,

we need their insight.

If we're gonna try to do the right thing

and do it well, we need their insight.

- Awesome. And how about for you, Pauline?

Anything that we haven't talked about

that has been on your

mind with all of this?

- I think I'm just looking

forward to the, you know,

like the future and see

what's, what's gonna happen

with the next, you know,

things with the guide book,

but also where, you know, like me

and Oscar are gonna be starting

our own training company

sometime next year or like that.

So that should be really

interesting to see how

that's gonna go when it's, you

know, we should be, be good.

But, you know, we're gonna,

hopefully we're gonna add

some new things to the

guide booklet as we go along.

- That's really ex that's really exciting

and I can't wait to see

where you take this effort

because it's gonna be really

exciting to see, you know,

how this evolves and, and

really where it goes from here.

Alright, thanks again. Take care. Bye.

- Thank

- You. Bye-Bye.

Thanks for joining the conversation.

If you'd like to reproduce all

or part of this podcast,

please email ici PUB at.edu.

- Our show is Co-produced

at the University

of Minnesota's Institute

on community integration

by impact managing editor Janet Stewart

and ICI, media producer Pete McCaulay.

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