Episode 1
Disability Justice: Centering the Most Marginalized Among Us
- 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
Transcript
- We fought for disability rights,
Speaker:and then it was like, what next?
Speaker:How can we be in the community more?
Speaker:And how can we bring the rest
of the community in with us?
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:My guest today is Nikki Villavicencio.
Speaker:Nikki, it's great to have
you here today in the studio.
Speaker:- Thanks for having me.
- Can you tell our,
Speaker:our listeners a little
bit about who you are
Speaker:and the organization that you work for?
Speaker:- Sure. I'm a disability
rights activist turn disability
Speaker:culture and leadership
specialist at Advocating
Speaker:Change Together.
Speaker:And we are a grassroots nonprofit
organization that is led
Speaker:by people with disabilities to train
Speaker:and teach
Speaker:and work side by side with
people with disabilities to
Speaker:further their self-determination
and self-advocacy skills.
Speaker:- That's great. And it's
been around our community
Speaker:for a long time and has
a, a long history here.
Speaker:What's the organization up to these days?
Speaker:- So we have disability
equality trainings.
Speaker:In fact, I teach a few of the classes.
Speaker:We have Disability
Power Days on Thursdays,
Speaker:which is a fun open class
Speaker:to anybody in the public that can come.
Speaker:And we do it once a
month, we do in person.
Speaker:And then the other Thursdays
we do it virtually.
Speaker:We have a Monday coffee chat.
Speaker:We have a side-by-side
choir where people with
Speaker:and without disabilities come together
Speaker:and sing disability right songs together
Speaker:and have a great time.
Speaker:Let's see, what else do
we do? We do conferences.
Speaker:We have a, we have an Olmsted Academy
Speaker:where we teach folks about their rights
Speaker:around the Olmsted decision.
Speaker:- And then with other hats on.
Speaker:You also are an elected
official in our community,
Speaker:and you have a lot of experience
in the labor movement.
Speaker:So can you tell me
about those other roles?
Speaker:- Sure. Yeah. So my, my
Speaker:community leadership
roles really brought me
Speaker:to advocating change together.
Speaker:And what I didn't mention
Speaker:before about ACT is we have
self-advocates of Minnesota,
Speaker:which is really our organizing
arm of our organization,
Speaker:and they're self-advocacy
groups all over the state
Speaker:that do self-advocacy trainings.
Speaker:And so how I kind of got to act is
Speaker:being merely instrumental
in the SEIU Home Care Union.
Speaker:I was on the first bargaining contract
Speaker:and I sit on their training
committee that helps tr
Speaker:develop the training
for home care workers.
Speaker:And you know, I realized early on
Speaker:that if I want my care to be
better, then I have to really
Speaker:help the whole system.
Speaker:And it means sometimes
speaking up for my workers
Speaker:who also have needs that,
that, that are not being met.
Speaker:And then, you know, doing that
work also led me to realize
Speaker:that, hey, if you wanna
see the laws in action
Speaker:that you wanna see done, you,
you might as well try and,
Speaker:and, and be a policymaker as well.
Speaker:And I really believe in representation.
Speaker:And quite frankly, there
are not enough people
Speaker:with disabilities being elected
in those type of positions.
Speaker:And local politics is a really great place
Speaker:because most people don't
understand that housing
Speaker:and transportation
Speaker:and really the essential aspects
Speaker:of living in a community are
decided by local politicians.
Speaker:And so, you know, I ran
my first race in: Speaker:and lost by five votes,
then ran again in: Speaker:and won by nearly almost 8,000.
Speaker:I was the highest top vote
getter in that election.
Speaker:And now I'm running again in
: Speaker:- And, and what is your current
Speaker:seat? Where, where do you serve
Speaker:- Maplewood City Council?
Speaker:- And so with all of that
experience though, the, well,
Speaker:the depth and breadth of that
experience made you really,
Speaker:the, the person we wanted
to reach out to, to be one
Speaker:of our issue editors when Impact decided
Speaker:to do an issue on disability
rights and disability justice.
Speaker:And it's just been terrific
working with you on that issue.
Speaker:We met about stories,
we met about what types
Speaker:of things we wanted to get covered.
Speaker:We met about what kind, you
know, who we wanted to do some
Speaker:of, of these articles.
Speaker:And you just have been
a terrific guide to me
Speaker:and the rest of the staff
Speaker:to ask those tough questions
about, you know, where
Speaker:where do, where does
disability rights stand today?
Speaker:Where does it maybe divert
Speaker:and Disability justice pick up?
Speaker:And so, you know, we, we've
talked about this a little,
Speaker:but tell me, tell me a
little more about kind
Speaker:of the intersection of
those two movements for you.
Speaker:- Yeah, so I look at it as,
you know, when I was a kid,
Speaker:the Americans with Disabilities
Act was signed into law
Speaker:and I didn't even know it happened.
Speaker:And I had to become an adult
to understand the breadth
Speaker:of what the Americans With
Disabilities Act does.
Speaker:And so disability rights
will always be something
Speaker:that's important to me.
Speaker:It'll always be something
that's passionate to me.
Speaker:And I look at Disability Justice
Speaker:as an intersectional movement that really
Speaker:asks the question of the whole community,
Speaker:how can we all work better together?
Speaker:And, you know, I am a
student of Sins invalid,
Speaker:which really brings the 10
principles of disability justice.
Speaker:And, you know, it's really
what ties in all the work
Speaker:that I do in my city council race.
Speaker:My values
Speaker:that I I I ran on were about justice
Speaker:and about centering the
most marginalized people.
Speaker:And, you know, disability rights
Speaker:originally tended to be more
centered around male whiteness.
Speaker:And I think disability
justice gives the opportunity
Speaker:to hear all the voices
at the table that need
Speaker:to be at the table.
Speaker:And just reminding ourselves
Speaker:that centering the most
marginalized really gets us
Speaker:to the best solutions.
Speaker:- And you, in your article for Impact,
Speaker:you talked about growing up in Crip
Speaker:camp and some of those stories.
Speaker:Can you tell us just a little
bit about what that was like
Speaker:and, and your personal
experience with disability?
Speaker:- Sure. Yeah.
Speaker:So when Crip Camp came out,
if anybody has, you know,
Speaker:seen it, it's an amazing
documentary produced by Barack
Speaker:and Michelle Obama.
Speaker:And it talks about a number of people
Speaker:with disabilities that
went to camp together.
Speaker:And I happened to go to
a camp very similar to
Speaker:that in the Wisconsin Dells. And
Speaker:- So what year would this have
- Been?
Speaker:So I was eight years old, that was in 90,
Speaker:I'm not good at math nineties,
Speaker:- Mid nineties, early
- Nineties, early nineties.
Speaker:And I, I had a very similar experience
Speaker:to the movie in the sense that
it was this awakening for me,
Speaker:and I think this is why I'm
Speaker:so passionate about disability
justice, is that people
Speaker:with disability disabilities
can do things together.
Speaker:So there were times at
camp that we learned how
Speaker:to help each other get
in each other's in a,
Speaker:in a wheelchair, how to
help each other eat, how
Speaker:to help each other go to the bathroom.
Speaker:And not because there was a
lack, but because we wanted to,
Speaker:because it was like this
amazing experiment to be able
Speaker:to say, Hey, we don't have to depend
Speaker:on other people that aren't like us.
Speaker:We can actually depend on each other,
Speaker:and that's really cool.
Speaker:And so I carried that in
my heart throughout my life
Speaker:and that, and then when I
learned about disability justice,
Speaker:it was like, it felt like home.
Speaker:It felt like it felt like
camp all over again. Did
Speaker:- You first learn about it
through sins invalid, or, yes.
Speaker:- Okay. Several years ago
there happened to be a couple
Speaker:of the authors that
came to the Twin Cities
Speaker:and they held workshops.
Speaker:- And so when, when you
first heard that, and, and,
Speaker:and this is an organiza
organization in California
Speaker:that does a lot with, well,
Speaker:really coined the phrase
disability justice and,
Speaker:and came up with the 10
principles surrounding it.
Speaker:But they do a lot, they the,
they do a lot of expression
Speaker:of justice through art.
Speaker:And so that's sort of their
modem to, to kind of deliver all
Speaker:of this, you know, in your
own personal intersections,
Speaker:you know, your own ethnicity.
Speaker:As you think about that, had
it, had it always occurred
Speaker:to you that maybe the disability
experience is different
Speaker:for someone who is white
Speaker:and affluent versus someone
from a marginalized community,
Speaker:historically marginalized community, and,
Speaker:and what was that like
for you as a realization?
Speaker:- Absolutely. You know,
Speaker:that I feel like disability
justice really does
Speaker:highlight intersectionality the most
Speaker:because there are disabled
people in every other community.
Speaker:And you know, it's exactly
what you said, A white woman
Speaker:with a disability, even the
same disability as myself,
Speaker:is gonna have a different
experience than someone
Speaker:of a person of color.
Speaker:And so, in my own experience,
Speaker:my grandfather immigrated
here from the Philippines,
Speaker:and so I'm a quarter Filipino,
Speaker:but he was a huge influence in my life.
Speaker:One of the reasons why is
because he delivered me,
Speaker:and he was a doc, he was a
prominent doctor in the community
Speaker:I grew up in, and I spent
a lot of time with him.
Speaker:And I learned just his perseverance
Speaker:through being accepted into
an all white community and,
Speaker:and still, you know, living
on his legacy from his family.
Speaker:And learning from that
really shaped my disability
Speaker:experience because it allows me to relate
Speaker:to people in a different way.
Speaker:It allows me to see different lenses that
Speaker:other people don't always
have, which in politics has,
Speaker:you know, afforded me a lot of grace.
Speaker:Because when you have empathy for people,
Speaker:they're much more open to talk
with you, to share with you
Speaker:and to trust you.
Speaker:- And even within the
disability community,
Speaker:there sadly has been a hierarchy,
hasn't there, you know,
Speaker:the people intellectual
Speaker:and developmental
disabilities, for example,
Speaker:have sometimes just not been
heard in the broader disability
Speaker:rights movement.
Speaker:And that's a fact.
Speaker:And, and you, you have worked with people
Speaker:of all kinds of disabilities
through your advocacy work now,
Speaker:working with advocating change
together, the Olmsted work
Speaker:that you've done, you've really
worked with a lot of people
Speaker:with intellectual disabilities.
Speaker:Have you seen some of that?
Speaker:Have you seen that, that
maybe people with IDD need
Speaker:to have more of a voice in the disability
Speaker:rights movement? Oh,
Speaker:- Absolutely, 100%.
Speaker:You know, to me, one of
the most important parts
Speaker:of disability justice is
centering the most marginalized,
Speaker:and people
Speaker:with developmental disabilities
have been pushed away
Speaker:for far too long, and their
voices do need to be heard.
Speaker:I, I know, you know, ICI
works a lot with cow Tipping
Speaker:and Interact
Speaker:and other organizations
similar to that, that are,
Speaker:are just kind of starting to
Speaker:or final, finally getting
some recognition and in the,
Speaker:and the talent, the beauty, the,
Speaker:just the amount of gifts
that, that people, all people
Speaker:with disabilities, but especially
people with intellectual
Speaker:and developmental disabilities
give to our communities.
Speaker:- And do you think we're
starting to see some change then?
Speaker:- Yeah, I mean, I think,
I think, you know,
Speaker:in my heart, I'm always an
activist, so there's a part of me
Speaker:that is always skeptical,
Speaker:but I'm also very
hopeful in the sense that
Speaker:disability justice gives me the hope that,
Speaker:that we're now at a level where I think
Speaker:that we wanna be arm
in arm with each other.
Speaker:It's not, we don't want, we don't want
Speaker:to have separate programs,
separate places to be,
Speaker:we want to be fully integrated and,
Speaker:and I think it's exciting
to think about where
Speaker:that could take us.
Speaker:- Anything we haven't
touched on that you think
Speaker:that really just stood out
to you as we were going
Speaker:through this experience
of putting this together?
Speaker:You had a great conversation
with people from all sides
Speaker:of the provider community
Speaker:and the advocacy community
in an article about
Speaker:how labor unions contribute
to this conversation.
Speaker:How was that for you?
Speaker:- It was a great experience in the sense
Speaker:that the union movement
isn't historically connected
Speaker:to the disability community traditionally,
Speaker:but goes hand in hand, so well,
Speaker:and so a lot of the skills I
learned in organizing in the
Speaker:labor movement i,
Speaker:I now use in the disability movement and,
Speaker:and it's, you know, when we talk about
Speaker:expressing ourselves in more
artistic ways, I think it's,
Speaker:it's great to blend those two things.
Speaker:But if I could just for a
second, go back a little bit to
Speaker:what you were talking about
with people with intellectual
Speaker:and developmental
disabilities being in the
Speaker:disability justice movement.
Speaker:I think the thing to that
really needs to be kind
Speaker:of maybe opened up
Speaker:and like said like,
Speaker:let's say the word is paternalism, right?
Speaker:Like, I think what held folks
Speaker:with IDD back from the
Disability Justice a movement
Speaker:was paternalism.
Speaker:You know, paternalism is a,
Speaker:a challenging thing to
overcome for a lot of folks
Speaker:with disabilities
Speaker:because being safe is a very
important and real thing.
Speaker:But there are many
cases in a lot of people
Speaker:with disabilities lives where safety
Speaker:becomes more important than
the ability to take risks
Speaker:and the ability to live a
life like non-disabled people.
Speaker:And I think that we're
getting to a point, you know,
Speaker:we have priorities up
at the capitol to try
Speaker:to adjust guardianship
Speaker:and give more rights to
people with disabilities.
Speaker:And, you know, I think we
need to address housing issues
Speaker:and certainly care issues.
Speaker:And putting in,
Speaker:putting the decision making
back in the hands of people
Speaker:with disabilities is really important.
Speaker:- And do you think there's a
secondary thread there that,
Speaker:that comes out in the issue
about allyship along with that?
Speaker:- Yeah, absolutely.
Speaker:So, you know, going back to
my experiences at summer camp
Speaker:when we were learning how
to depend on each other
Speaker:to do things, you know,
there is no reason why in,
Speaker:in this world we live in now that people
Speaker:with disabilities can't depend
on each other in that way.
Speaker:You know, I'm a person
with multiple disabilities,
Speaker:but I certainly could
help one of my friends
Speaker:with intellectual disabilities
maybe balance their budget,
Speaker:maybe help them make a
grocery list, maybe, you know,
Speaker:do many different things
Speaker:and we can depend on, on each
other to do those things.
Speaker:And there's many, there's
semi-independent living,
Speaker:there's lots of different ways
people can live with support.
Speaker:- It reminds me of the very
end of your article when you,
Speaker:when you told a, just a great image of a,
Speaker:of a story about rowing
together at, at camp.
Speaker:Can you, can you tell
that, share that story?
Speaker:- Sure. Yeah. So one of my friends
Speaker:that I met every year at
camp, one of the first years
Speaker:we were together, we got
to roll a canoe together
Speaker:and it was the most exciting, scary
Speaker:thing I probably have ever done.
Speaker:And we both, so she's a person
that was born without arms,
Speaker:and I am a person that uses my feet.
Speaker:I have very limited movement
in my arms and hands.
Speaker:And so both of us rode success,
Speaker:rode successfully a boat
together, she did one side
Speaker:and I did the other side.
Speaker:And it was just another example
Speaker:of two people with
disabilities doing something
Speaker:that probably many other people
thought could never happen.
Speaker:- Love
- It. I would like
Speaker:to add one more thing, if that's okay.
Speaker:Sure, sure. So, you know, one thing
Speaker:that I'm very passionate
about is the rights of parents
Speaker:with disabilities.
Speaker:So I've worked on legislation
Speaker:around parenting with a disability.
Speaker:There is a report that's coming
out like literally this week
Speaker:or next about parenting with
a disability in Minnesota.
Speaker:And it's, the report will
be going to the legislature
Speaker:and we're trying to build up supports
Speaker:and the rights of parents
with disabilities,
Speaker:because right now you're two
Speaker:to three times more likely
in the state of Minnesota
Speaker:to have your parental rights
terminated if you have a
Speaker:disability on your educational record.
Speaker:- Wow. And so what is that
conversation right now?
Speaker:Because there we're talking
Speaker:as a nation right now about
guardianship again, you know,
Speaker:with all of the high profile
cases that have been out there,
Speaker:this is a multifaceted issue.
Speaker:So how do we craft something that
Speaker:ensures parents with disabilities
have parental rights,
Speaker:but also ensures that
the children, the people
Speaker:with disabilities have rights as well?
Speaker:- Yeah. So there's a national
report called Rocking the
Speaker:Cradle, I think it was put out
Speaker:by the National Council on Disability.
Speaker:And it, it goes through the whole problem
Speaker:and then it actually gives
many different solutions
Speaker:to help the issue.
Speaker:And one of them that I've
been working on is more
Speaker:of a preventative, it's
to give care specifically
Speaker:for p parenting.
Speaker:So not a babysitter,
Speaker:but like for instance, I'm a
mother, I have an 11-year-old,
Speaker:but when my 11-year-old was six months,
Speaker:I was denied more care
Speaker:because my care was not for my daughter.
Speaker:And then what happened is
our care got segmented,
Speaker:so then I was not able
Speaker:to even have my home care workers wash my
Speaker:daughter's clothes.
Speaker:So that's when I realized that
something needs to be done.
Speaker:And so the legislation
Speaker:that I'm currently
working on is around that.
Speaker:It's around giving the care.
Speaker:It would be extra like 20 hours.
Speaker:It depends on, it would depend on
Speaker:how your evaluation would be.
Speaker:It would, it would depend on
the development of your child
Speaker:and then the dev, the, the
needs of you, the, the parent.
Speaker:And, and so yeah, it,
it's a lot of work there.
Speaker:And as you probably can figure
out that people of color
Speaker:with disabilities have
higher rates of having their,
Speaker:their children taken away.
Speaker:The court system has very
open biases against people
Speaker:with disabilities.
Speaker:And in my, you know, adv, self-advocacy,
Speaker:helping other folks in
Minnesota, I got to see
Speaker:that firsthand.
Speaker:And it's, it's an ugly truth to see.
Speaker:- Wow. Our co-host today has
been Nikki Villavicencio,
Speaker:and I just wanna thank
you not only for today,
Speaker:for joining us today,
Speaker:but also for all the work
you've done on the issue.
Speaker:You really have made it a much better,
Speaker:a much better publication,
Speaker:and we're so glad to
have you as a partner on
Speaker:- This.
Speaker:Well, thank you so much.
It's been fun. Yeah.
Speaker:- Great.
Speaker:Thanks for joining the conversation.
Speaker:If you'd like to reproduce all
Speaker:or part of this podcast,
Speaker:please email ici pb@umn.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.
Speaker:Graphic designers are Connie
Burkhart and Sarah Curtner.
Speaker:For more information on the institute
Speaker:and all of our products
Speaker:and projects, please visit ici.dot edu.
