Episode 14 Transcript
00:14 [Allycia Wolff] Welcome to Focus on the Future, a future planning podcast for caregivers and families supporting people with disabilities. Focus on the Future is a podcast of The Arc Minnesota, a nonprofit organization advocating for people with intellectual and developmental disabilities. My name is Allycia Wolff. I’m an advocate here at The Arc Minnesota and your host and producer for Focus on the Future. In this week’s episode, we will be discussing the future of disability services and The Arc Minnesota itself. This will be our last episode in this series of the podcast focusing on future planning. Today I have invited Andrea Zuber onto the podcast. She is the CEO of The Arc Minnesota, and a passionate advocate for people with disabilities. She has a beautiful vision for what she sees the future of the disability community to be. And a lot of really wonderful perspectives and how to get there. In this conversation about the future of The Arc Minnesota and disability services in general, we know that we’re also facing a world where the future overall is really unsure. None of us really know what our new normal is gonna look like when we come out of the COVID-19 pandemic. You’re all experiencing great challenges and changes, people with disabilities and people without disabilities. Of course, this new world is affecting people differently, depending on what your socioeconomic status is, what your culture is, what different communities you’re a part of. But overall, we’re seeing changes for everybody across the board. And these challenges, like I said, are happening on a global level. Our new normal is gonna look different than our normal did before all of this started. So in the context of thinking about the future and planning for the future, we’re in a really unique spot right now where we can think outside of the box and consider that when we’re rebuilding our community, we can rebuild it with intention and with purpose and with positivity, so that when we come out on the other side of this, we’re better than we ever have been before. And we’re on a trajectory to move forward to better support our community as a whole. This podcast has talked a lot about future planning in the context of what individual people can do for their own family and for loved ones, and for their own future planning. So we’ve talked about it on more of an intimate scale as well as thinking on a larger scale. So today, in the conversation with Andrea, we’re gonna be talking more globally. How The Arc Minnesota wants to push forward a way to better serve people with disabilities, families, and our community in general. As you listen to this episode of the podcast, think about the future in terms of what you want to see happen and what you need to see happen for your own personal future, for your loved one’s personal future and for overall disability services and our community as a whole. And with that, let’s dive into the conversation with Andrea. Hi, Andrea. Thank you for coming on to the podcast today.
03:47 [Andrea Zuber] Thanks for having me.
03:49 [Allycia Wolff] We are welcoming Andrea Zuber today to Focus on the Future. She is the CEO of The Arc Minnesota and a passionate advocate supporting people with intellectual, developed and developmental disabilities, and has been doing so for quite a few years now.
04:05 [Andrea Zuber] Yeah, thanks, Allycia. I have been working in this field for just about 20 years now. A little bit over. Started out as a direct support professional, and I worked in day training and habilitation, supported employment, and group homes, when I first started out in the field. And then I actually came to The Arc before it was a statewide organization, and I worked for one of the local chapters in the metro area, and I did individual advocacy for adults with developmental disabilities. And then I moved into local government. I spent 14 years in local government. I was a human services manager for disability services, in Ramsey County, and then I moved over to Dakota County and I was the social services director there before I came to The Arc Minnesota in this role. This is something that’s been in my family and in my blood my whole life. My parents both worked in local government during de-institutionalization in the ’60s, ’70s, & ’80s, and so dinner conversation were all about equal rights for people with disabilities, moving people in the community, and fierce advocacy. So it’s always then in my heart. I kind of grew up in in the field, so to speak.
05:30 [Allycia Wolff] Interesting. And that makes so much sense because since the moment that I have met you, whether it was work that we had before you started at The Arc Minnesota, or since you’ve been there, you have always spoke so passionately about how you want the world to look like for people with disabilities. And so when you see the future, when you look for- When you look towards the future of how we support people with disabilities and how our community looks, what do you see? What do you hope for?
06:00 [Andrea Zuber] Well, there’re so many opportunities for real transformation right now. We have such a unique time, the changes in our world during this COVID-19 pandemic, we’re seeing our world change on a day to day basis. So I think more than ever right now, it is important to envision a very bright future for people with intellectual and developmental disabilities and really understand the power and the capacity that they have. 17 years ago, I was at a planning session, and the facilitator opened the day by having each person say what their dream of the future for people with disabilities was. And what I said was, right now we walk into a grocery store and we see somebody with a developmental disability working there, and we think to ourselves, “Wow, that’s so cool. They hire people with developmental disabilities.” And my dream is that someday we’ll walk into that same grocery store and we’ll see people with developmental disabilities working there. And we won’t think anything at all because it’s so normal. It’s so normal that it’s not cool. It’s just life. And that’s still my dream today. And it’s a dream that is shared by so many people in our community, especially people with disabilities themselves. So really, it’s a future that holds at its forefront equity and belonging, and leads with principles of self-determination and self-direction.
07:29 [Allycia Wolff] And how do you see The Arc Minnesota as an organization, as a nonprofit grassroots organization, playing into that vision for the future?
07:38 [Andrea Zuber] A couple of ways. One is we are going to make a concerted effort to change the narrative about people with disabilities and shine a spotlight on their wisdom, power, strength, and capacity. And we need to do that first. If we want landlords to rent to people, and employers to hire people, and people in general to be supportive neighbors and friends, we need to shine a spotlight on those gifts and strengths and talents that people with disabilities bring to the table. So we’re gonna re-frame the narrative from risk and weakness and vulnerability to strength and capacity. We have high expectations for people with intellectual and developmental disabilities. The second is to launch a movement that highlights that wisdom, strength, resiliency, capacity, power. Because that’s what we know to be the truth. We know that people are strong and capable. And so why a movement? Well, we constantly hear from young people with disabilities who are expressing their desire to access post-secondary education and training, have a meaningful job, have a home of their own, and have meaningful relationships and connections. And we know that people with developmental disabilities can and are living that life. But too many people with developmental disabilities still find that life to be out of reach. Too many people with disabilities feel isolated. Too many people with disabilities are living in poverty. And why is that? Through research and interviews and focus groups, what we’ve heard over and over is that people with developmental and intellectual disabilities are seen as different and separate. And unknown. And they’re seen as weak and needy and vulnerable and dependent.
09:29 [Allycia Wolff] Yeah, and not given a chance, even really to start to show what strength they have to offer.
09:36 [Andrea Zuber] So, exactly. Why would employers hire someone they see as weak and vulnerable? And why would property owners rent to someone they see as needy and helpless? So we all play a critical role in this, not just people who are connected to people with intellectual developmental disabilities, but people who aren’t as well. We’ve told society that they don’t need to worry about people with disabilities because we have a whole other universe created to care for them, and it’s not their problem. So the reality is this dream envisioned will require all of us to care and understand and come to know people with developmental disabilities, see them as human beings. So we’re gonna ask people to commit to this and step up and take personal responsibility and say, “I will hire people with disabilities. I will welcome renters with disabilities. I will listen to people. I will see them, I will get to know them, and I will be an ally and help break those unfounded stereotypes that were unfairly placed upon them.”
10:34 [Allycia Wolff] Yeah, this seems so different than how people with disabilities have been supported over the course of the last 20, 30 years. But it also seems so common sense to lead with strength and to help people create a good future and to see people for people. But it’s obviously not the norm. And we keep getting into these cycles where people with disabilities aren’t really given the chance or the opportunity to be able to have the resources to move forward. I’m curious if you’ve done much, you know, research and thinking into how we have gotten here and then how we can get out of out of the space as well.
11:17 [Andrea Zuber] Yeah, so this is- What we’re talking about doing is really different because we’re really talking about re-framing the way that we talk and think about people with disabilities, and about changing the narrative and the stories that we tell about them. So I was fortunate to be able to spend some time studying and practicing how to re-frame these kinds of topics based on research and work done at the Frameworks Institute, which is a national organization working to change the conversation on social issues, and find the right frame and use words that really change minds. We know from the field of neuroscience that our brains need to create pathways in order to make sense of things. So we naturally categorize and sort and filter information. And when we hear repeated messages in society, we come to believe those as true. And once those beliefs have been worn in over and over into our brains, it’s difficult for us to think different or change our beliefs. So when it comes to messaging, another interesting thing we’ve learned about our brains is that we don’t differentiate between negatives and positives very well. So if I say people with disabilities are not weak, people still hear that message of weakness. It fits into their existing schema, our belief system, and they stay with the belief that people with disabilities are weak. So what we found is that we need to say what we mean, what we want people to understand and believe and know, not what we don’t want them to understand or believe or know. So we’re making the shift using words that are affirmative and the message that we want people to know and understand. People with disabilities are strong. They’re powerful, they’re capable. They’re wise, they’re resilient. And when we do this, we can start to change hearts and minds. You know, employers will want to hire these amazingly talented individuals. Property owners will want to rent to people. Neighbors will want to be a friends with people. The goal for all of this is really for people with disabilities to be able to live a regular life in regular society the way that everybody else does. And so we need community and society to really see people with developmental disabilities for what they are: powerful, strong, capable, wise citizens.
13:34 [Allycia Wolff] Because we know that language is powerful, right? We have had over the past 10 years or so, the disability community has gone through a huge effort to eliminate the R word. And what’s interesting is, you were talking before, and I was seeing similarities in not only how our society treats people with disabilities, but it is in alignment with so many minorities across the board, right? Like what different communities that have been marginalized have also gone through. And so it’s similar in a way to what the disability community is trying to do to try to create more and more equity. And we know that language is powerful. That could be a first step. And so what steps can we as a community and families and employers do and advocates and friends do to move forward? Is there anything specific that you would recommend?
14:32 [Andrea Zuber] One thing I think we need to do is learn how to tell our stories in new ways. We have these old ways of telling stories about people with disabilities to get funding and services, and they’re really focused around pity and weakness and vulnerability, like if we don’t do this, bad things will happen. And that kind of messaging has really kept us in this space where society sees people as weak and needy and vulnerable. So we’ve been thinking about how we can start talking about people in terms of the incredible return on investment that comes with making sure that our families, neighborhoods, schools, workplaces, and communities are whole and diverse and equitable. Because what we need is a strong network of flexible, self-directed, and individualized services paired with informal supports from trusted people in people with disabilities’ lives. So we need to talk about how much people disabilities have to offer, that they are strong and worthy of support. One example from our current landscape is medical rationing, and fortunately, federal guidance has been put into place now. But the first group of people that hospitals and medical providers started looking at in terms of prioritizing or de-prioritizing treatment, were people with developmental disabilities. And I think that’s directly a result of the messages that we’ve given in the name of trying to get services and supports in place. We keep saying they’re weak, they’re needed, they’re vulnerable, they’re dependent. And it ends up having the opposite effect on what we want. Because if people see them that way, them, they’re not seen as worthy. So supporting people will still require financial resources and that’s important, because when we do, the benefits to society and the world will be exponential, we will see returns on social, economic, and civic engagement. You know, the Chamber of Commerce says that people with disabilities are working right at dollar, that as the economy flows through seven times before it goes up, and there’s a high probability that with those kinds of inputs, they’ll be- We’ll have less tax funded supports to rely on overtime. So, through socio-economic mobility, mental well-being improves and we all have this better future, these better communities, better society in our lives. And wouldn’t it be amazing to envision the future where we’re all working ourselves out of jobs because community and society step up? Ultimately, we’re talking about creating equity and belonging. Beyond typically, what we’ve talked about around inclusion. It’s really about looking at, “Yes, we have resources that we’re going to invest as a society because this population of people is worth it.”
17:27 [Allycia Wolff] And this is the future. This is our movement that we want to be pushing forward, and this is how we are going to be aligning our messaging as The Arc moving forward. With that being said, is there anything as far as future planning when you think individually for families, or if you think globally for the disability community, is there anything else that you wanted to share in general with listeners today about the future of our community?
18:02 [Andrea Zuber] Yeah, so I want to be sure that people know that when I talk about this vision for the future, I’m including people who have significant support means or significant cognitive disabilities in this vision for the future, in these hopes, in these dreams that that we have. And I’ve talked about today we all need different levels of support to get through a day or a week or a lifetime. But everyone has the right to be included in that dream. It’s just about having the right support so that all people can access it. So back to my dream from 17 years ago, where I talked about walking into a grocery store and wishing that we didn’t even notice that they hired people with disabilities. Here is the vision that I pictured for the future. A little baby is born with an intellectual and developmental disability, and every one around her celebrates. Her doctors met with her parents and explained that there are robust supports and networks in Minnesota and that this baby will prosper. As she grew, she attended day care and school with her siblings. She played in the neighborhood and with all the kinds of things that kids growing up in our communities do. She did chores, played sports, spent too much time on her iPhone and texted with her friends. She graduated from high school, went on the post secondary education. She started working at a neighborhood business and had encouragement from her boss and her coworkers, so she meets the needs of her employers. She moved into an apartment with her friend and was surrounded by community who supported her when she needed it. And I could keep going with this right? She fell in love. She got married. She took Lyft and Uber to get places. And this is all doable and possible with the will to tap into the abundance of our communities and build the supports we need for the future. So that all people, even people with the very most significant disabilities, can access this dream. And everyone in Minnesota is a contributor to the vital network that helps foster belonging for individuals. And we can co create this future together. So one of the things that I try to say every time I am talking about this with people is, if not us, then who? And it’s not now, when?
20:24 [Allycia Wolff] If not us, then who? If not now, then when? So this will be on the forefront of The Arc Minnesota and how we want to be speaking and what our agenda is for the future. So stay in tune. How would you suggest that people stay in touch with The Arc and support individually and support us in the community overall?
20:51 [Andrea Zuber] Well, become a member of The Arc Minnesota. Get on our website. We have an incredible amount of resources on the website to support people. There’s all kinds of information training, education, opportunities to connect, to get together. There’s lots of opportunity for volunteering with The Arc Minnesota and the Arc’s Value Village thrift stores. We need everyone to come together to support this great organization from across the state. So the more the merrier. We have this amazing podcast series, and so if you haven’t listened to all of them, I think you should go back and listen to all of them and hopefully stay tuned for more of that in the future. We have a statewide phone number that will connect you to all of our services. We have Ask an Advocate where you can go in and ask any questions that you wonder about. We have a really strong public policy platform where we’re constantly monitoring state and national legislation and contributing in a really big way to promote and protect the human rights of people with disabilities. So there’s lots of ways to get involved. Check out all the social media sites and our online information, and we’ll loop you in.
22:07 [Allycia Wolff] Thank you, Andrea. And I also wanted to know that this conversation really centers around community and connection and how we’re all intertwined. And in the time right now that we’re living in where we are confronted with the realities of this mass pandemic, we are seeing our community come together. We’re seeing that people are supportive of each other with all of these hard times. There’s also so many good things that are happening, and I really believe that this can be kind of foreshadow- The community that we’re experiencing right now could be a foreshadow into how our community community can come together in the future as we are supporting people with disabilities and changing the quote unquote norm that currently exists.
22:55 [Andrea Zuber] Absolutely. I believe that the future is bright and that we can co create it together.
23:03 [Allycia Wolff] Thank you so much for taking time today, Andrea.
23:06 [Andrea Zuber] Yeah, thank you so much.
23:10 [Allycia Wolff] Having Andrea on the podcast is a great way to wrap up what Focus on the Future has been thus far. We have talked about many different elements of future planning. We have discussed how legal planning, financial planning, and quality of life planning are all important factors when people individually think about how to plan for the future. In this episode and a few times before, we’re talking more globally about how to better serve and support people with disabilities and how our community can come together as a whole to really make our world a better place for everybody. I would like to thank all of the guests who have been on the podcast and have contributed their knowledge and their expertise and their passion to be featured on this podcast. We are wrapping up Focus on the Future for now, and we have full intentions to be back with more content in a podcast format in the future. So for now, we will say, see you later. Focus on the Future is a podcast of The Arc Minnesota. Subscribe to this podcast on your favorite streaming service to stay up to date with the newest episodes and new content in the future. If you are enjoying listening, please donate at arcminnesota.org/podcast. You can also show your support by leaving us for a review. Our podcast music is composed and recorded by Micah Kadwell. Micah is a talented guitarist from New Brighton, Minnesota, and he also has autism. Thank you, Micah. Focus on the Future is produced by The Arc Minnesota by a team of wonderful people. Thank you all and thank you for tuning in. It’s been a joy to do this podcast with you. Have a great day and we will see you next time.