Shownotes
- 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
Transcripts
00;00;00;00 - 00;00;22;29
Nikki Villavicencio
You know, 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?
00;00;23;01 - 00;01;01;17
Janet Stewart
Welcome to Impact the Conversation, a podcast of the University of Minnesota's Institute on Community Integration. It 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.
00;01;01;19 - 00;01;07;29
Janet Stewart
My guest today is Nikki Villavicencio. Nikki, it's great to have you here today in the studio.
00;01;08;02 - 00;01;08;25
Nikki Villavicencio
Thanks for having.
00;01;08;25 - 00;01;14;15
Janet Stewart
Me. Can you tell our listeners a little bit about who you are and the organization that you work for?
00;01;14;18 - 00;01;43;09
Nikki Villavicencio
Sure. I'm a disability rights activist turned 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.
00;01;43;12 - 00;01;50;24
Janet Stewart
That's great. And it's been around our community for a long time and has a long history here. What's the organization up to these days?
00;01;50;26 - 00;02;16;22
Nikki Villavicencio
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 once a month, we do in person. And then the other Thursdays we do it virtually. We have a, Monday coffee chat.
00;02;16;24 - 00;02;39;20
Nikki Villavicencio
We have a side by side choir where people with and without disabilities come together and sing, disability rights 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 Olmstead decision.
00;02;39;22 - 00;02;51;03
Janet Stewart
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?
00;02;51;04 - 00;03;23;23
Nikki Villavicencio
Sure. Yeah. So my my, community leadership role is 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 really instrumental in the SEIU homecare union.
00;03;23;26 - 00;03;51;08
Nikki Villavicencio
I was on the first bargaining contract, and I sit on their training committee. That helps to, 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.
00;03;51;10 - 00;04;15;06
Nikki Villavicencio
And then, you know, doing that work also led me to realize that, hey, if you want to see the laws in action that you want to see done, 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.
00;04;15;08 - 00;04;49;11
Nikki Villavicencio
wnty and won by nearly almost:00;04;49;11 - 00;04;50;21
Nikki Villavicencio
So we'll see where we go.
00;04;50;27 - 00;04;53;14
Janet Stewart
And and what is your current seat? Where do you serve.
00;04;53;14 - 00;04;55;09
Nikki Villavicencio
Maplewood City Council.
00;04;55;11 - 00;05;20;29
Janet Stewart
And so with all of that experience. So 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 as we met about what types of things we wanted to get covered.
00;05;20;29 - 00;05;45;06
Janet Stewart
We met about what kind of, 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?
00;05;45;08 - 00;05;54;24
Janet Stewart
And so, you know, 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.
00;05;54;25 - 00;06;19;00
Nikki Villavicencio
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.
00;06;19;07 - 00;06;49;25
Nikki Villavicencio
It will 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, since invalid, which really brings the ten principles of disability justice. And, you know, it's really what ties in all the work that I do in my city Council race.
00;06;49;25 - 00;07;23;28
Nikki Villavicencio
My values that 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.
00;07;24;00 - 00;07;35;10
Janet Stewart
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 your personal experience with disability?
00;07;35;16 - 00;07;56;26
Nikki Villavicencio
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. I went to camp together, and I happened to go to a camp very similar to that in the Wisconsin Dells.
00;07;56;28 - 00;07;59;10
Janet Stewart
And so what year with this have been?
00;07;59;17 - 00;08;07;19
Nikki Villavicencio
So I was eight years old. That was in 90. I'm not good at math, 90s.
00;08;07;19 - 00;08;09;08
Janet Stewart
Mid 90s.
00;08;09;11 - 00;08;40;00
Nikki Villavicencio
Early 90s. And I, I had a very similar experience to the movie in the sense that it was this awakening for me. But and I think this is why I'm so passionate about disability justice is that people with disability and 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 wheelchair, how to help each other eat, how to help each other go to the bathroom.
00;08;40;02 - 00;09;01;24
Nikki Villavicencio
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.
00;09;01;24 - 00;09;08;23
Nikki Villavicencio
And then when I learned about disability justice, it was like it felt like home. It's like it felt like camp all over again.
00;09;08;24 - 00;09;12;04
Janet Stewart
Did you first learn about it through Sins Invalid or. Yes.
00;09;12;04 - 00;09;21;29
Nikki Villavicencio
Okay. Several years ago, there happened to be a couple of the authors that came to the Twin Cities and they held workshops.
00;09;22;01 - 00;09;54;26
Janet Stewart
And so when you first heard that and and this is an organization organization in California that does a lot with, well, really coined the phrase disability justice and came up with the ten principles surrounding it. But they do a lot the they do a lot of expression of justice through art. And, so that's sort of their mode, 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.
00;09;54;28 - 00;10;13;19
Janet Stewart
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 what was that like for you as a realization?
00;10;13;21 - 00;10;43;15
Nikki Villavicencio
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 going to have a different experience than someone, a person of color. And so in my own experience, my grandfather immigrated here from the Philippines.
00;10;43;18 - 00;11;22;28
Nikki Villavicencio
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 doctor. 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.
00;11;23;00 - 00;11;44;11
Nikki Villavicencio
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.
00;11;44;13 - 00;12;22;15
Janet Stewart
And even within the disability community, there sadly has been a hierarchy, hasn't there? You know, the people with 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 Olmstead work that you've done, you've really worked with a lot of people with intellectual disabilities.
00;12;22;15 - 00;12;32;14
Janet Stewart
Have you seen some of that? Have you seen that that maybe people with ID need to have more of a voice in the disability rights movement?
00;12;32;14 - 00;13;05;14
Nikki Villavicencio
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 know, you know, I see I work a lot with cow tipping and interact and other organizations similar to that that are just kind of starting to or finally, finally getting some recognition.
00;13;05;14 - 00;13;21;21
Nikki Villavicencio
And in the, in the talent, the beauty, the, just the amount of, gifts that are that people, all people with disabilities, but especially people with intellectual and developmental disabilities give to our communities.
00;13;21;24 - 00;13;25;26
Janet Stewart
And do you think we're starting to see some change then?
00;13;25;29 - 00;13;48;21
Nikki Villavicencio
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 want to be arm in arm with each other.
00;13;48;23 - 00;14;04;14
Nikki Villavicencio
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.
00;14;04;16 - 00;14;27;12
Janet Stewart
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?
00;14;27;14 - 00;15;02;00
Nikki Villavicencio
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 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.
00;15;02;03 - 00;15;30;08
Nikki Villavicencio
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 disabled justice movement. I think the, thing 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 ID back from the disability justice a movement was paternalism.
00;15;30;10 - 00;16;01;27
Nikki Villavicencio
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 then the ability to take risks and the ability to live a life like non-disabled people.
00;16;01;29 - 00;16;28;26
Nikki Villavicencio
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.
00;16;28;28 - 00;16;36;04
Janet Stewart
And do you think there's a secondary thread there that that comes out in the issue about allyship along with that?
00;16;36;07 - 00;17;11;04
Nikki Villavicencio
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 each other to do those things.
00;17;11;04 - 00;17;19;17
Nikki Villavicencio
And there's many. There's semi-independent living. There's lots of different ways people can live with support.
00;17;19;19 - 00;17;31;24
Janet Stewart
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 to share that story?
00;17;31;24 - 00;17;58;15
Nikki Villavicencio
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 row, canoe together. And it was the most, exciting, scary, fascinating thing I probably have ever done. And we both. So she is a person that was born without arms, and I am a person that uses my feet.
00;17;58;18 - 00;18;26;04
Nikki Villavicencio
I have very limited movement in my arms and hands. And so both of us rowed six, rowed 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.
00;18;26;05 - 00;19;02;22
Nikki Villavicencio
Sure. Okay, 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 the 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 2 to 3 times more likely in the state of Minnesota to have your parental rights terminated.
00;19;02;22 - 00;19;06;09
Nikki Villavicencio
If you have a disability on your educational record.
00;19;06;11 - 00;19;34;17
Janet Stewart
Wow. And so what is that conversation right now? Because 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 that people with disabilities have rights as well?
00;19;34;22 - 00;19;59;23
Nikki Villavicencio
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 solution plans to help the issue. And one of them that I've been working on is more of a preventative. It's to give care specific for parenting.
00;19;59;23 - 00;20;24;27
Nikki Villavicencio
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. And so then I was not able to even have my home care workers wash my daughter's clothes.
00;20;24;29 - 00;20;54;15
Nikki Villavicencio
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'd be extra like 20 hours. It depends on it would depend on how your evaluation would be. It would, would depend on the development of your child and then the, the, the needs of you, the parent and and so, yeah, it's it's a lot of work there.
00;20;54;20 - 00;21;23;15
Nikki Villavicencio
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, advocacy, self-advocacy, helping other folks in Minnesota, I got to see that firsthand. And it's it's an ugly truth to see.
00;21;23;17 - 00;21;41;26
Janet Stewart
Wow. Our co-host today has been Nikki Villavicencio. And I just want to 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 now.
00;21;41;27 - 00;21;43;13
Nikki Villavicencio
Thank you so much. It's been fun.
00;21;43;13 - 00;21;49;18
Janet Stewart
Yeah, great to.
00;21;49;20 - 00;22;00;03
Janet Stewart
Thanks for joining the conversation. If you'd like to reproduce all or part of this podcast, please email ICP at UMD Edu.
00;22;00;05 - 00;22;37;13
Pete McCauley
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 McCauley. Skyler Mihajlov 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 AISI UMD Edu.
