• Nikki Villavicencio of Advocating Change Together in Minnesota, joins Impact managing editor Janet Stewart in the ICI studio for a discussion about disability justice and solidarity in advocating for disability rights. Nikki served as an issue editor for the Disability Rights, Disability Justice issue of Impact.
• Subscription link: https://ici.umn.edu/products/impact/subscribe 

- We fought for disability rights,

and then it was like, what next?

How can we be in the community more?

And how can we bring the rest

of the community in with us?

- 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.

My guest today is Nikki Villavicencio.

Nikki, it's great to have

you here today in the studio.

- Thanks for having me.

- Can you tell our,

our listeners a little

bit about who you are

and the organization that you work for?

- Sure. I'm a disability

rights activist turn disability

culture and leadership

specialist at Advocating

Change Together.

And we are a grassroots nonprofit

organization that is led

by people with disabilities to train

and teach

and work side by side with

people with disabilities to

further their self-determination

and self-advocacy skills.

- That's great. And it's

been around our community

for a long time and has

a, a long history here.

What's the organization up to these days?

- So we have disability

equality trainings.

In fact, I teach a few of the classes.

We have Disability

Power Days on Thursdays,

which is a fun open class

to anybody in the public that can come.

And we do it once a

month, we do in person.

And then the other Thursdays

we do it virtually.

We have a Monday coffee chat.

We have a side-by-side

choir where people with

and without disabilities come together

and sing disability right songs together

and have a great time.

Let's see, what else do

we do? We do conferences.

We have a, we have an Olmsted Academy

where we teach folks about their rights

around the Olmsted decision.

- And then with other hats on.

You also are an elected

official in our community,

and you have a lot of experience

in the labor movement.

So can you tell me

about those other roles?

- Sure. Yeah. So my, my

community leadership

roles really brought me

to advocating change together.

And what I didn't mention

before about ACT is we have

self-advocates of Minnesota,

which is really our organizing

arm of our organization,

and they're self-advocacy

groups all over the state

that do self-advocacy trainings.

And so how I kind of got to act is

being merely instrumental

in the SEIU Home Care Union.

I was on the first bargaining contract

and I sit on their training

committee that helps tr

develop the training

for home care workers.

And you know, I realized early on

that if I want my care to be

better, then I have to really

help the whole system.

And it means sometimes

speaking up for my workers

who also have needs that,

that, that are not being met.

And then, you know, doing that

work also led me to realize

that, hey, if you wanna

see the laws in action

that you wanna see done, you,

you might as well try and,

and, and be a policymaker as well.

And I really believe in representation.

And quite frankly, there

are not enough people

with disabilities being elected

in those type of positions.

And local politics is a really great place

because most people don't

understand that housing

and transportation

and really the essential aspects

of living in a community are

decided by local politicians.

And so, you know, I ran

and lost by five votes,

and won by nearly almost 8,000.

I was the highest top vote

getter in that election.

And now I'm running again in

- And, and what is your current

seat? Where, where do you serve

- Maplewood City Council?

- And so with all of that

experience though, the, well,

the depth and breadth of that

experience made you really,

the, the person we wanted

to reach out to, to be one

of our issue editors when Impact decided

to do an issue on disability

rights and disability justice.

And it's just been terrific

working with you on that issue.

We met about stories,

we met about what types

of things we wanted to get covered.

We met about what kind, you

know, who we wanted to do some

of, of these articles.

And you just have been

a terrific guide to me

and the rest of the staff

to ask those tough questions

about, you know, where

where do, where does

disability rights stand today?

Where does it maybe divert

and Disability justice pick up?

And so, you know, we, we've

talked about this a little,

but tell me, tell me a

little more about kind

of the intersection of

those two movements for you.

- Yeah, so I look at it as,

you know, when I was a kid,

the Americans with Disabilities

Act was signed into law

and I didn't even know it happened.

And I had to become an adult

to understand the breadth

of what the Americans With

Disabilities Act does.

And so disability rights

will always be something

that's important to me.

It'll always be something

that's passionate to me.

And I look at Disability Justice

as an intersectional movement that really

asks the question of the whole community,

how can we all work better together?

And, you know, I am a

student of Sins invalid,

which really brings the 10

principles of disability justice.

And, you know, it's really

what ties in all the work

that I do in my city council race.

My values

that I I I ran on were about justice

and about centering the

most marginalized people.

And, you know, disability rights

originally tended to be more

centered around male whiteness.

And I think disability

justice gives the opportunity

to hear all the voices

at the table that need

to be at the table.

And just reminding ourselves

that centering the most

marginalized really gets us

to the best solutions.

- And you, in your article for Impact,

you talked about growing up in Crip

camp and some of those stories.

Can you tell us just a little

bit about what that was like

and, and your personal

experience with disability?

- Sure. Yeah.

So when Crip Camp came out,

if anybody has, you know,

seen it, it's an amazing

documentary produced by Barack

and Michelle Obama.

And it talks about a number of people

with disabilities that

went to camp together.

And I happened to go to

a camp very similar to

that in the Wisconsin Dells. And

- So what year would this have

- Been?

So I was eight years old, that was in 90,

I'm not good at math nineties,

- Mid nineties, early

- Nineties, early nineties.

And I, I had a very similar experience

to the movie in the sense that

it was this awakening for me,

and I think this is why I'm

so passionate about disability

justice, is that people

with disability disabilities

can do things together.

So there were times at

camp that we learned how

to help each other get

in each other's in a,

in a wheelchair, how to

help each other eat, how

to help each other go to the bathroom.

And not because there was a

lack, but because we wanted to,

because it was like this

amazing experiment to be able

to say, Hey, we don't have to depend

on other people that aren't like us.

We can actually depend on each other,

and that's really cool.

And so I carried that in

my heart throughout my life

and that, and then when I

learned about disability justice,

it was like, it felt like home.

It felt like it felt like

camp all over again. Did

- You first learn about it

through sins invalid, or, yes.

- Okay. Several years ago

there happened to be a couple

of the authors that

came to the Twin Cities

and they held workshops.

- And so when, when you

first heard that, and, and,

and this is an organiza

organization in California

that does a lot with, well,

really coined the phrase

disability justice and,

and came up with the 10

principles surrounding it.

But they do a lot, they the,

they do a lot of expression

of justice through art.

And so that's sort of their

modem to, to kind of deliver all

of this, you know, in your

own personal intersections,

you know, your own ethnicity.

As you think about that, had

it, had it always occurred

to you that maybe the disability

experience is different

for someone who is white

and affluent versus someone

from a marginalized community,

historically marginalized community, and,

and what was that like

for you as a realization?

- Absolutely. You know,

that I feel like disability

justice really does

highlight intersectionality the most

because there are disabled

people in every other community.

And you know, it's exactly

what you said, A white woman

with a disability, even the

same disability as myself,

is gonna have a different

experience than someone

of a person of color.

And so, in my own experience,

my grandfather immigrated

here from the Philippines,

and so I'm a quarter Filipino,

but he was a huge influence in my life.

One of the reasons why is

because he delivered me,

and he was a doc, he was a

prominent doctor in the community

I grew up in, and I spent

a lot of time with him.

And I learned just his perseverance

through being accepted into

an all white community and,

and still, you know, living

on his legacy from his family.

And learning from that

really shaped my disability

experience because it allows me to relate

to people in a different way.

It allows me to see different lenses that

other people don't always

have, which in politics has,

you know, afforded me a lot of grace.

Because when you have empathy for people,

they're much more open to talk

with you, to share with you

and to trust you.

- And even within the

disability community,

there sadly has been a hierarchy,

hasn't there, you know,

the people intellectual

and developmental

disabilities, for example,

have sometimes just not been

heard in the broader disability

rights movement.

And that's a fact.

And, and you, you have worked with people

of all kinds of disabilities

through your advocacy work now,

working with advocating change

together, the Olmsted work

that you've done, you've really

worked with a lot of people

with intellectual disabilities.

Have you seen some of that?

Have you seen that, that

maybe people with IDD need

to have more of a voice in the disability

rights movement? Oh,

- Absolutely, 100%.

You know, to me, one of

the most important parts

of disability justice is

centering the most marginalized,

and people

with developmental disabilities

have been pushed away

for far too long, and their

voices do need to be heard.

I, I know, you know, ICI

works a lot with cow Tipping

and Interact

and other organizations

similar to that, that are,

are just kind of starting to

or final, finally getting

some recognition and in the,

and the talent, the beauty, the,

just the amount of gifts

that, that people, all people

with disabilities, but especially

people with intellectual

and developmental disabilities

give to our communities.

- And do you think we're

starting to see some change then?

- Yeah, I mean, I think,

I think, you know,

in my heart, I'm always an

activist, so there's a part of me

that is always skeptical,

but I'm also very

hopeful in the sense that

disability justice gives me the hope that,

that we're now at a level where I think

that we wanna be arm

in arm with each other.

It's not, we don't want, we don't want

to have separate programs,

separate places to be,

we want to be fully integrated and,

and I think it's exciting

to think about where

that could take us.

- Anything we haven't

touched on that you think

that really just stood out

to you as we were going

through this experience

of putting this together?

You had a great conversation

with people from all sides

of the provider community

and the advocacy community

in an article about

how labor unions contribute

to this conversation.

How was that for you?

- It was a great experience in the sense

that the union movement

isn't historically connected

to the disability community traditionally,

but goes hand in hand, so well,

and so a lot of the skills I

learned in organizing in the

labor movement i,

I now use in the disability movement and,

and it's, you know, when we talk about

expressing ourselves in more

artistic ways, I think it's,

it's great to blend those two things.

But if I could just for a

second, go back a little bit to

what you were talking about

with people with intellectual

and developmental

disabilities being in the

disability justice movement.

I think the thing to that

really needs to be kind

of maybe opened up

and like said like,

let's say the word is paternalism, right?

Like, I think what held folks

with IDD back from the

Disability Justice a movement

was paternalism.

You know, paternalism is a,

a challenging thing to

overcome for a lot of folks

with disabilities

because being safe is a very

important and real thing.

But there are many

cases in a lot of people

with disabilities lives where safety

becomes more important than

the ability to take risks

and the ability to live a

life like non-disabled people.

And I think that we're

getting to a point, you know,

we have priorities up

at the capitol to try

to adjust guardianship

and give more rights to

people with disabilities.

And, you know, I think we

need to address housing issues

and certainly care issues.

And putting in,

putting the decision making

back in the hands of people

with disabilities is really important.

- And do you think there's a

secondary thread there that,

that comes out in the issue

about allyship along with that?

- Yeah, absolutely.

So, you know, going back to

my experiences at summer camp

when we were learning how

to depend on each other

to do things, you know,

there is no reason why in,

in this world we live in now that people

with disabilities can't depend

on each other in that way.

You know, I'm a person

with multiple disabilities,

but I certainly could

help one of my friends

with intellectual disabilities

maybe balance their budget,

maybe help them make a

grocery list, maybe, you know,

do many different things

and we can depend on, on each

other to do those things.

And there's many, there's

semi-independent living,

there's lots of different ways

people can live with support.

- It reminds me of the very

end of your article when you,

when you told a, just a great image of a,

of a story about rowing

together at, at camp.

Can you, can you tell

that, share that story?

- Sure. Yeah. So one of my friends

that I met every year at

camp, one of the first years

we were together, we got

to roll a canoe together

and it was the most exciting, scary

thing I probably have ever done.

And we both, so she's a person

that was born without arms,

and I am a person that uses my feet.

I have very limited movement

in my arms and hands.

And so both of us rode success,

rode successfully a boat

together, she did one side

and I did the other side.

And it was just another example

of two people with

disabilities doing something

that probably many other people

thought could never happen.

- Love

- It. I would like

to add one more thing, if that's okay.

Sure, sure. So, you know, one thing

that I'm very passionate

about is the rights of parents

with disabilities.

So I've worked on legislation

around parenting with a disability.

There is a report that's coming

out like literally this week

or next about parenting with

a disability in Minnesota.

And it's, the report will

be going to the legislature

and we're trying to build up supports

and the rights of parents

with disabilities,

because right now you're two

to three times more likely

in the state of Minnesota

to have your parental rights

terminated if you have a

disability on your educational record.

- Wow. And so what is that

conversation right now?

Because there we're talking

as a nation right now about

guardianship again, you know,

with all of the high profile

cases that have been out there,

this is a multifaceted issue.

So how do we craft something that

ensures parents with disabilities

have parental rights,

but also ensures that

the children, the people

with disabilities have rights as well?

- Yeah. So there's a national

report called Rocking the

Cradle, I think it was put out

by the National Council on Disability.

And it, it goes through the whole problem

and then it actually gives

many different solutions

to help the issue.

And one of them that I've

been working on is more

of a preventative, it's

to give care specifically

for p parenting.

So not a babysitter,

but like for instance, I'm a

mother, I have an 11-year-old,

but when my 11-year-old was six months,

I was denied more care

because my care was not for my daughter.

And then what happened is

our care got segmented,

so then I was not able

to even have my home care workers wash my

daughter's clothes.

So that's when I realized that

something needs to be done.

And so the legislation

that I'm currently

working on is around that.

It's around giving the care.

It would be extra like 20 hours.

It depends on, it would depend on

how your evaluation would be.

It would, it would depend on

the development of your child

and then the dev, the, the

needs of you, the, the parent.

And, and so yeah, it,

it's a lot of work there.

And as you probably can figure

out that people of color

with disabilities have

higher rates of having their,

their children taken away.

The court system has very

open biases against people

with disabilities.

And in my, you know, adv, self-advocacy,

helping other folks in

Minnesota, I got to see

that firsthand.

And it's, it's an ugly truth to see.

- Wow. Our co-host today has

been Nikki Villavicencio,

and I just wanna thank

you not only for today,

for joining us today,

but also for all the work

you've done on the issue.

You really have made it a much better,

a much better publication,

and we're so glad to

have you as a partner on

- This.

Well, thank you so much.

It's been fun. Yeah.

- Great.

Thanks for joining the conversation.

If you'd like to reproduce all

or part of this podcast,

please email ici pb@umn.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.

Skyler Mahi Love is our editor.

Graphic designers are Connie

Burkhart and Sarah Curtner.

For more information on the institute

and all of our products

and projects, please visit ici.dot edu.