Episode Transcript
Speaker 2 00:00:59 Good evening, everyone. Thanks for joining us.
Speaker 0 00:01:02 Uh, we have several people with us tonight, so I want to start out by thanking them. First of all, for joining us, I appreciate that. Um, arc Minnesota, uh, we'll start with Andrea. Andrea is the CEO of RQ, Minnesota, also Stan Allen. Oh, by the way. Good evening, Andrea.
Speaker 2 00:01:22 Good evening. Thank you so much for having us here tonight. We're excited about the show.
Speaker 0 00:01:27 We also have Stan Alan's. Dan is the director board of director co-chair of argument Assata. He's also the chief communications officer of idols awareness services. Good evening, Dan.
Speaker 3 00:01:42 Hey, how are you doing Sam?
Speaker 0 00:01:43 I apologize. I have an old school phone ringing in the background, shame on me last, but certainly not least. We have poppies Unquist poppy is the board of directors member of argument soda, and is also a paraprofessional for St. Paul public schools. Good evening, poppy.
Speaker 3 00:02:07 Thank you for allowing me to be on here. I'm super excited.
Speaker 0 00:02:11 I bet the whole public schools thing has gotten very interesting.
Speaker 3 00:02:18 Yeah, it's still is, you know, kind of same old, same old, but just lots of new things and well to old things all at the same time.
Speaker 0 00:02:28 So I want you guys to start and just take a minute to introduce yourself sort of, so people get used to your voice and, um, tell me how you got to our
Speaker 2 00:02:39 Well, uh, how did I get to arch? My career has really been spent in the disability services field and I kind of grew up in, in the field as well because both of my parents were part of the disability rights movement back in the sixties, seventies, eighties, nineties. And so we had a lot of dinner table conversation about disability rights and deinstitutionalization. Both of my parents were really involved in the deinstitutionalization movement in Minnesota, moving people with disabilities from large state hospitals and into community-based settings. And I kind of grew up in the field. I started out as a practitioner and I worked in group homes and I did employment for people with disabilities, um, intellectual and developmental disabilities specifically. And, and then I went to the arc and I did advocacy about 20 years ago. And I, I spent some time 15 years in between and local government working in most recently in Dakota county as the social services director there. And then I always wanted to come back to disability specific work and the arc, especially. So I've been in my role as the CTO for the arc Minnesota for three years now.
Speaker 0 00:03:56 Wow. You've kind of been everywhere.
Speaker 2 00:03:59 Yeah, like I said, I kind of grew up in the field.
Speaker 0 00:04:03 Poppy, how about you?
Speaker 3 00:04:06 Um, my journey with, um, being a part of the arc, um, began from a friend who kept, uh, sharing information about the arc. Um, and initially in the beginning with my schedules, no, the things I do outside of, um, working as a paraprofessional and all other avenues of what I like to enjoy or participated in the timeline just didn't match up. But eventually the timeline did keep back, you know, did match up. And so I began, um, attending, um, the, one of the groups there, um, which is SAC and that was basically a self-advocacy group. And so I started there and that just opened up many opportunities, um, to be a part of the group. And to just clarify a little bit, so people know if they don't know that SAC is one of the, um, ag advocacy groups that you can join through the arc of Minnesota.
Speaker 3 00:05:07 So I started there and then it progressed to, um, little conversations or speakings or little interviews, or, Hey, would you mind speaking about, uh, disability employment? Um, and then it just progressed to, Hey, there's a open seat, um, to be a member on, uh, the board of directors and we are thinking that you would be, um, a good candidate if they so choose you, is, is this something that you're interested in? And that's the, as a person who has, uh, just really and intersecting identities, um, it is always been very important to advocate for myself, but I also feel it's important to advocate for others, um, and people where there intersecting identities, or if they're BiPAP that are having a way more injustice, it's very important to, to work towards that and to give back. Um, and so that is kind of how I've, um, enjoyed being on the arc. And I've been with the arc now almost almost two years, I'm still new, but I'm enjoying the process and I'm enjoying meeting amazing people like Andrea and Stan, and so many other people that have, uh, helped me grow as an individual, um, professionally, um, personally, and as a member of the team. Thank you,
Speaker 0 00:06:41 Stan. How about you?
Speaker 4 00:06:44 Well, I just want to first say that, um, poppy is a wonderful board member and we couldn't have a better CEO than Andrea, so I'm just honored to serve with both of them. Um, my journey to the arc. Um, I actually worked for Minneapolis public schools when I first moved to Minnesota. And, um, so I, my job required me to partner and know about a lot of different agencies, organizations across the twin cities. So I know a little about art when I was there because there are so many students and so many families with a lot of different needs. Um, and I just didn't know a lot about it. Um, and then I'm also a parent of, of, of, uh, of a student, a child who, who really struggled in school, um, with some diagnosis, ADHD, anxiety, um, different things that made it very difficult for him in school.
Speaker 4 00:07:33 Um, so I had a special heart for parents that had kids with IEP and I saw how hard it was to navigate. Um, I was in a position of privilege in a school district and it still was really hard for me to navigate. So I always had something in me that I wanted to go back and help everybody else. I mean, if, if, if leaders in the district are having struggles, struggles, um, we need to help other people. And so lo and behold, I was introduced to the arc. I was asked to be on the board. Um, and then I just got excited about the new direction that is taking. Um, and then also, and I'll be finished with this. Um, I am a partner in a tech startup company called vitals aware services, the creator of the vitals app, um, and that's a different whole session, but, um, this technology works directly with people who have various conditions and disabilities that make them vulnerable, um, and is technology to support them and help them when they're in a time of need. Um, so vitals has partnered with, with, with, with different advocacy groups, including arc. Um, so I think it was destiny for me to be involved with, um, art, Minnesota.
Speaker 0 00:08:42 Great. Thank you so much for all that explanation. Give me a little bit of an overview about arc. What, who is ARCA, Minnesota, Andrea, you want to take that one?
Speaker 2 00:08:55 Sure. So the arc Minnesota is a statewide organization that serves to promote and protect the human rights of people with intellectual and developmental disabilities and support them and their families. So they can have a lifetime of full inclusion and participation in their communities. And that's really our mission. We were founded 75 years ago. Wow. Yeah, it's amazing to think about it. Um, and I've had the privilege of working, um, with some of those moms that started the arc Minnesota, and I it's an honor. Um, but it was a group of Minnesota parents who came together to build a better future for their children who had intellectual and developmental disabilities. And at that time, the path laid out for their children, led to institutes, institutionalization, state, hospitals, and segregation, and very horrible living conditions. And they were demanding change. So since then the arts grassroots advocacy has really been a primary catalyst for change to faster inclusion and opportunity for Minnesotans with disabilities.
Speaker 2 00:10:00 We promote and protect the human and civil rights of people with disabilities through systems and social change. So we have a really progressive legislative agenda that we bring forward each year. And we support a lifetime of inclusion and participation through individualized advocacy and informed choice. So alongside people with disabilities, we are working to co-create communities that are centered in justice, where all people have belonging, citizenship, agency, and freedom, and we've truly come a long way over the past 75 years. And we also know we have a long way to go. Our vision is that people with disabilities belong in a world that welcomes them a world where they're valued and respected. So our values are human and civil rights self-advocacy and self-direction equity and belonging and disability and racial justice. And those really guide our shared work to change systems and build an inclusive society. I think
Speaker 0 00:11:09 As part of me feels like that's going to happen when disability is not among one of the first couple of things that people point out about a person.
Speaker 2 00:11:17 Exactly. I was at a, like a strategic planning session for the Minnesota association for supporting employment first about 20 years ago. And they asked what your vision for the future was. And I said, you know, right now I walk into my local grocery store and I see people with intellectual and developmental disabilities working there. And I think, wow, that's so cool that they hire people with disabilities. And I said, my dream, my vision is that one day we're going to walk into that grocery store and we're going to see people with intellectual and developmental disabilities working there. And we're not going to think anything at all.
Speaker 0 00:12:00 Yeah. Did you recently have a merger or something?
Speaker 2 00:12:04 We did. So originally the argument is soda was comprised of many separate local chapters across the state. And in 2018, we merged into one statewide organization that covers the west central mid state Metro Southeast and Southwest regions of the state. And we also have one affiliate chapter, the arc north Northland that covers the greater Duluth area and the iron range. So we have a charge now that's much broader than when we were separate organizations. We have a whole state to serve and that's comprised of, yeah, it's so cool. Um, and you know, there's so many diverse communities, there's so many people with intersecting identities and people that have, you know, shared and unique experiences, needs, hopes, and dreams. Um,
Speaker 0 00:12:54 I want to talk about, uh, Stan you, um, can you talk a little bit about arcs board work mission?
Speaker 4 00:13:03 Sure. Um, and I, I will, um, I'll say that we're right. I'll talk about where, where I think we were, um, when I first joined, um, I think I was on that initial, um, board class when it, when it was, when there was just merging. And, um, I don't want to point fingers, but I will say that the arc was really, really struggling serving all people in Minnesota and serving communities of color and, and all kinds of, you know, anything involving diversity. I felt like it was a struggle. So having, um, this new board and having Andrea lead, um, it's been very, um, satisfying to see the shift in direction in energy. Um, but you know, as a board, our, our mission is to support the administration that the executive team and the staff in, in what they're doing to, to advocate for individuals and families and caregivers who are living with intellectual developmental disabilities.
Speaker 4 00:14:11 Um, and it's the charge to serve as many people across the state as they can. Um, and not just people in the twin cities and not just people who, who, who, who have privilege, but everybody, um, we, um, we have all kinds of, um, resources and services that that folks can tap into. Um, but at the end of the day, um, this board needs to be doing things and making decisions that create institutional and systemic change, um, in the lives and in, in the systems too. So they can improve the quality of life and in all of people living with developmental intellectual disabilities and their families and their caregivers, um, we, we, we talk about equity a lot. Um, and, and I can get into that later. I think you're going to ask me questions about that later, but, um, that's what the boys charges and that's what, um, that's what we're all about now today.
Speaker 0 00:15:14 Great. Thank you. Uh, so Andrea, talk a little bit about, I think that transformation, you know, kind of where you have been historically and what's going on.
Speaker 2 00:15:30 So kind of building on what Stan said, you know, the argument is soda has historically served the white middle and upper classes very well. And much of our work over the past several decades has been very focused on the disability services system or the disability industrial complex. And that system was built by and for white middle-class families and people with disabilities to meet their unique needs. And it comes with a strong entitlement factor and the arc has helped people access that system, navigate that system and stay in that system. And more recently, we've been also focused on system quality and improvement efforts in the last three years, especially we've been focused on transforming that system to meet the modernize needs of the younger generations of people with disabilities coming down, the pipeline, people that want to access the real world and regular life. They've grown up in inclusive neighborhoods.
Speaker 2 00:16:29 They've gone to school with their siblings and peers, and now they expect to access post-secondary education. Have jobs, have a home of their own, have relationships, all the ordinary things that many of us desire. And as a merged statewide organization, we need to expand the work we're doing and change how we're doing the work and broaden our reach. We need to really lean into how to grow beyond what we've and truly work to serve all of the diverse communities in our state. And then 2020 after George Floyd's murder, which spurred a reckoning for many of us, we felt even further called to expand our work and broaden our reach, because we know there's a disproportionately high percentage of people with disabilities who are black, brown, and indigenous. And those with intersecting identities are often most of the marginalized, most marginalized folks in society. And, you know, because of ableism, racism, systemic and structural oppression, they're the most on an underemployed.
Speaker 2 00:17:29 They experienced the most homelessness. They have the worst health outcomes. They have the most interaction with law enforcement. So we've begun to work at the arc to assess and address our gaps in our work and ensure that we can support people with disabilities who are black, brown, and indigenous and have intersecting identities. And we're working now to build an arc for all. That's how, we're, how we're branding the, and to ensure that people with intellectual and developmental disabilities are not only named in our mission, but that they're informing and leading everything we do. And then we're also transitioning from an advocacy and human or disability rights model to a disability justice model of service. We've always said, we're an advocacy organization. And if you think about the word advocate, it means speaking on behalf of other people, and now we're working towards allyship and to advocate with and alongside of, and actually behind people with disability, so that they're in the design seat of their lives.
Speaker 0 00:18:30 How has COVID affected all this?
Speaker 2 00:18:34 Well, we were able to pivot to a remote working model quite, quite easily. Luckily we had already started laying a lot of the infrastructure as an organization because of our merger. And we knew that we needed to be able to expand our reach across the whole state. And so I think we are, we just have the technological capacity, you know, to be able to reach more people and really lean into that. Um, we've had to, um, you know, obviously when COVID hit, there was, uh, people with disabilities were kind of the first ones that were thrown under the bus, uh, medic medic, you know, medical rationing, and in terms of being treated really differently around expectations regarding quarantine, uh, and then vaccines. And so there was a lot of advocacy work that our organization did in coalition with a lot of other advocacy organizations across the state to really make sure that people with disabilities weren't left behind because, you know, for all the progress we've made, they still are the most marginalized group of people that when something like that hits are the first people to be discounted and kind of put in the back of the line.
Speaker 2 00:19:40 So we were able to pivot and we've done well through the pandemic luckily, um, but it created just a whole new set of circumstances that we had to make sure we were addressing.
Speaker 0 00:19:53 So, um, equality and the social model of accessibility. That's happy. Do you want to kind of address that?
Speaker 3 00:20:11 Sure. I would love to, sorry, trying to, um, click, uh, restate the question just to make sure I hear it correctly,
Speaker 0 00:20:20 Your equality and social model, like why is it quality and accessibility, um, why that is important to, um, all,
Speaker 3 00:20:29 Um, well, first of all, the, um, the medical model or the individual model is, um, where the disability defines as an illness or just really that it is a result of a physical condition that is to the individual or the part that, of the body that is affected. And so that basically means for that part of it is that we are going to fix you. We are going to hear you, um, and that as a human level, that can create some unhealthy, um, mental health issues of you feeling that you're already broken and that you aren't, uh, important, or that you are not, um, like already valued as, as someone who, who is able-bodied that doesn't have, uh, just like it puts this shift of who, who is, um, good look that first who's going to get help or support first. Um, but the social model is looking at the individual and it was first coined and re redefined by the world health organization or who in 2001.
Speaker 3 00:22:07 And they defined it as, um, an umbrella term, serving some components, which is impairments, which is the problem of the body or the function structure that may not be moving or working in the ways of how enabled body person's body would, would move the activity of the limitations. So that's difficulty of the, um, that's going to be encountered by it that the person dealing with a task or action, and then the, the participation, uh, restrictions is the problem experienced by the person involving their life situation, along with what that entails for the life, um, situations so that all those, the, the medical model already creates this ability of thinking that you are broken. That the only way that you're going to be able to function in our environment and our world is that we cure you, that we fixed you, that we make your body because it's not functioning the way it should, based on the belief or the opinion based on the medical, uh, belief or, or teachings as they're going through medical school, that caring you is the only way to give you the best, uh, access in life.
Speaker 3 00:23:39 Whereas the social model is looking at how we can at what we can change for individuals of any need, any level of access. And in turn that access positively resolved and affects everyone. One example is curb cuts or originally designed for individuals that use wheelchairs or mobility aids. But obviously we know now that people that have a stroller pushing their child, they have more access that makes them have an easier time crossing the street, then having to lift the Mo you know, the, the stroller up and then putting it down over the curb, having a wet and lugging something, uh, luggage it's much easier to go from the curb to the street versus having to bring it down to the curb and pulling it or lifting it up. Um, so it affects a society in a positive way, by giving access to everyone, by giving the access in a way that it is already presented and set in society, it is already available. If you so need or choose that access for yourself, where you would have to find that access by consistently asking or searching for someone to be able to provide that for you to make it accessible for you.
Speaker 0 00:25:22 Do you feel like, um, the medical model is getting better?
Speaker 3 00:25:29 I don't entirely disagree with the medical model because with some of that, and I've used myself as an example, the medical model by them figuring out, and many of the things that they have done for me have progressed way more, positively, way more, easily, less recovery, time, more precise, more quick, and in an action of doing that type of work. So I don't say that it, that doctors shouldn't help people and say, there is not true need to make your body function better. Because for myself, one of the disabilities that I have is cerebral palsy, and that is a movement impairment. And for my case, uh, my medical diagnosis is the official term is spastic quadriplegia, which means all quadrants of my body, all areas of my body are affected. So in my case, and there's five different categories. And so there's different variances and levels and degrees for everyone.
Speaker 3 00:26:38 And then you can have cross, uh, things where your, your, this is part of one area. This is another, so it's very, um, specific. Um, but it basically makes my muscles tight all the time. People with cerebral palsy, depending on their situation and how it is for them, they end up using four to five times more oxygen and spend four to five times more energy than the human able-bodied individual doing anything that is breathing that is talking that is picking up a pencil. It's all those things. So the medical model for me, did give me access to having better mobility, having a easier time with movement, having an ability of, of finding out what physical things that I like to do outside my life. So I don't disagree with, um, the medical model and I do agree it is getting better, but I also think when we're teaching our doctors, that we need to also let them know that these medical events is can help, but it is not the only way to look at the patient.
Speaker 3 00:28:01 We need to look at the patient to also look at what are the social along with the mental impacts of, of, of teaching. Because what you're doing is when you grow up and I'm not, uh, negatively looking at my family, my family only knew what they knew. My family only knew the medical model. What are you going to do as a parent or a family that no one knows nothing about a particular disability or a health issue. You are going to seek medical professionals and they are going to teach you what they know, and that's not necessarily a bad thing.
Speaker 0 00:28:41 So, but there is truth in what you say in regards to, um, that you're right, that, that there might be a certain percentage that may not be helped with, you know, some of this progressive, um, treatments. And so the medical field treat them when they're a part of the, the people that can't be helped or that won't progress because the treatment won't work for them, that I, I hear what you're saying, that that's part of the model that maybe needs to be strengthened. And that, that those, the medical field needs to understand. What do you do with those who cannot take, you know, the path of I'm going to fix you? Um, and how do you make sure that you leave them in a way that they don't feel like we're saying
Speaker 3 00:29:35 We shouldn't give people the impression, even if it is unintentioned, that's why we have to be careful how we address things for families say these are some options to make or movement or whatever the case may be better and says, this is how we're going to fix you. This is how we're going to cure you. This is how we're going to hear CP. This is how we're going to fix it, because the person doesn't need to be fixed. What needs to be fixed is the inequity of the not having access. And some of that access is having a well-rounded information along with medical model options and choices. But knowing that there are societal access changes in equities that we need to look at and start working on first or along with, I shouldn't say first for the long, with all these other options to give families a more well well-rounded choices and options and being informed.
Speaker 3 00:30:40 I mean, I even myself came into knowledge of what social model was in the beginning as of my twenties. And I'm still learning more about that specifically for different groups that are having equity needs that are not being addressed. And they've been working on this forever. So our society in many ways still have to catch up, but you feel the medical model, a group is progressing and changing, but also it's giving people full information on other, other information, not just choices, but other information, not just giving the information to families that it's the medical model as well. Here's what the social model is. And this is how they can work in unison and can join together to give access to everyone which in turn will give them equitable opportunities to be a part of things. Because when you go with the medical model first, that gives the person the feeling of, well, if this particular thing I want to enjoy that I want to try, but because there isn't that this really access there, that's going to give them the impression of, well, I shouldn't try it.
Speaker 3 00:32:03 I'm not going to do it. It's it can cause a lot of like, uh, this service for personal growth and wanting to go in an area of interest and growth, uh, and to be a part of their community. Whereas if the access is there, then they can be a part of that and they can decide this is where, while they want to partake in, well, I want to participate in or where I want to go, where they want to learn about, or if I just plumb one and try it because who hasn't tried things in their life and have the privilege of going, especially to someone who does not have a disability at all, they already have the equity of choosing in most cases, what they want to do, what they want to try it. But if that access isn't there, that's going to make you already think, well, I can't do it because no one else has. And maybe that's not the case, but having the access, there's going to give you knowledge and information that here are the people that have tried it. Um, and thank goodness, the internet, because that is also helping with, um, giving people more of an awareness of, of, of things when there isn't that access.
Speaker 0 00:33:19 That to me has become quite, not a total equalizer, but a game changer, certainly a game changer.
Speaker 3 00:33:27 I mean, very, very, very much. I mean, YouTube is one, uh, Tik TOK. There are an exorbitant amount of disabled creators talking about, uh, many things. People who are blind, such as Molly, Burke, uh, just so many creators. It's unbelievable that I didn't even know that we're there and we're doing things in their communities and where they lived. And that just has maybe even more fired up to do what I would like to change here. So, I mean, definitely a wholehearted Lakers. You're a hundred percent.
Speaker 0 00:34:10 We need to let, excuse me, people know your tune to cafe 90.3, FM Minneapolis, and KFA dot O R G. This is disability and progress. My name is Sam. I'm the host of the show, Miguel engineers and Charlene dolls. My research team, we're here with a whole load of people from Ark, the Ark, Minnesota. Um, I like to talk to you Stan, about equality and why it's necessary. Do you, um, want to give us a little bit of info on that?
Speaker 4 00:34:42 Sure. Um, if, if this wasn't radio, um, you'd be able to see that I'm a black man. I have kids. And so I have lived the life where I've seen, you know, why equity's important. Why, why, why, why it's essential and equality is, is awesome. If we can get the equality, that'd be great. We're so far away from that though. Um, but, but, you know, so I think that, you know, there are some things I think about, like, we need to get to the point in this state where everyone, regardless of their race, their gender, their immigrant status, their sexual orientation or gender, their geographic location, um, they must be treated, you know, with respect, with dignity. Um, we need to be in a position where we're giving people opportunity is in choices to maximize their quality of life. Um, those are things that are important.
Speaker 4 00:35:38 And then as, as a state, as a state of Minnesota, our future viability and relevance depends on how we do this work. Um, in diversity, um, we have an aging population. Um, we have an aging white population and we have a lot of black and brown people and people of different sexual orientations and, and you name it that are, that need to be in place, um, to do these jobs, to, to run the state. And so Minnesota has to do a better job, but I do want to shift. And to me, what, what, what I'm passionate about is, you know, we, we spend a lot of time and we talk about, you know, equity. We talk about providing services and talk about all this stuff. Um, but as a black person that has navigated the IEP system, I have seen firsthand a population of people that they don't know anything about arc.
Speaker 4 00:36:34 They don't know anything about these services. In fact, they're trying to live literally. And if we don't do a better job, black and brown boys will continue to die in this state. They will continue to be misunderstood feared, um, because people have ignorance and no intelligence and, and don't understand them. And so while we talk about a segment of people that we need to do better with, we also have a population of people that we haven't even started serving yet. And they're at the most risk. Um, my son's best friend and I, I have to tell the story because this brings it to life. Um, so they met, um, and you know, the special ed program and the Minneapolis school district when they were in second grade, um, they became best friends. Second and third grade. Um, this young man was in my house all the time.
Speaker 4 00:37:28 He didn't have the, the life that my son had because he wasn't in the situation. His parents, his mom was doing the best. She could, she had multiple kids, they had been in trouble. And so he was raising himself for the most part. And you know, of course, when you're doing that, you end up getting in trouble. And so if, if you have services like ours and other advocacy groups that parents know about, then they can know they have resources. But if you don't, you know, you, you, you get into the special ed system and you get into setting to when you're getting to level three and usually getting level four, which is the pipeline to prison as a lot of people know. Um, so as my son kept, we kept fighting for him fighting for him. It wasn't working out in a traditional school. Um, I'm not going to say, yeah, I can say this young man name, his name is Devontae. Um, he, he, he didn't have people fighting for him. And, you know, at a young age, he ended up getting gunned down and killed in the streets of Minneapolis. And all I could think about is, man, if we adults that have some type of power intelligence influence could have done a better job, maybe we could have saved a life.
Speaker 4 00:38:44 I'm talking about the kids and the people who don't have any help. And we are obligated when we talk about equity and equality, we're obligated to do a better job to make sure that's happening so we can save lives. And then we can also improve lives.
Speaker 0 00:39:00 I often give my research team a chance to ask any questions she might have. Um, and so Charlene, do you have any questions?
Speaker 5 00:39:14 Um, I'm really interested in knowing if there's any real track for kids whose families aren't able to help them as much. Is there more attention going to be taken for that?
Speaker 4 00:39:37 Andrea, do you want to take that or do you want me to start it? You can start
Speaker 5 00:39:41 And I can add on,
Speaker 4 00:39:43 Yeah, I think that, um, that's a great question. Um, because I feel like in the past little was done and, um, but I, I do see that administration Andrew's team like running fast with urgency, um, and she's going to talk probably more specific, but when I was working in Minneapolis public schools, um, what, I knew that I knew that if you were a black, I'm just used black boy, and you were, if you had an IEP, some type of disability, you are going to get you already going to get suspended, but now you're going to get suspended exponentially. I mean, my son got suspended 10 times and second grade when we were trying to figure out what his diagnosis was. And so that happens all the time. And so we need to figure out things that will keep kids in school and not get in the habit of, okay, because something that you can't control, you're automatically going to be thrown out.
Speaker 4 00:40:45 So I know that the arc is behind, um, a body of work. That's, that's looking at, um, like a moratorium we're pausing or stopping suspensions at an early age when kids are vulnerable and people don't even know what's going on. You know, half of the kid, half of the black kids in Minneapolis, public schools, and really St. Paul for the first time, the first time they even know they have any diagnosis is when they get to school. And so we have to figure out ways. And I know Andrea can probably speak a little bit more specific about that.
Speaker 2 00:41:25 Yeah. So it's so complex, right? So obviously we still have so far to go for people with disabilities to have belonging and to have justice. And, um, I think the work of many activists, individuals, families, right along the way, have brought us to this point where we cannot really focus on leaning into the principles of disability justice. And I think that's really important as we think about how we transform. And co-create a future, uh, for people with disabilities that is more just the medical model, like Papi said, told us that the problem was with the person with the disability and they needed to be fixed according to the standards of normal and the social model, which we've been working under for the last couple of decades tells us that it lies not in fixing the person, but changing our society. And that's definitely true. Um, when we think about the narrative, we tell ourselves and the stories we tell ourselves in the public images and how we've kind of created all these, uh, incorrect falsehoods about people with disabilities and people of color.
Speaker 2 00:42:28 Um, but you know, I think the disability justice movement kind of takes us into this different space where the time has come to recognize and support people with disabilities, for who they wholly are. And it is going to take a really different way of honoring people who have intersecting identities, diverse backgrounds, a wide variety of lived experience. And I think what is gonna really need to happen is that we think about how we can redistribute share and actually relinquish power so that people with disabilities are in leadership roles are in the design seat and are creating the future. They want to see in their communities. And until it isn't, you know, the white dominant middle-class culture and using the medical model and the social lens to think that we know what's best until we actually have people like happy and stand in leadership roles and can design what the future is gonna look like for young people.
Speaker 2 00:43:25 Then we are going to just continue to get the status quo, right. We have to emphasize intersectionality center, the experience of people with disabilities themselves and let them co-create that future. So, um, I think the work is, I mean, Stan talked a little bit about, uh, some of the stuff that we have on our legislative agenda right now. Um, we have, we, we have to, while we're kind of thinking about taking care and making sure that the existing way that we do things is, is as stable as possible. We can't continue to put our energy there because then we have stagnation and then we have a nurse and then nothing changes. So it can't implode. We have to kind of try to say, how do we continue to sort of keep what we have, um, like give it enough to just be okay, but all of our energy, all of our life giving time and energy and resources really has to be sent, spent on the future that we want to see for people.
Speaker 2 00:44:33 So the argument is that a did put forward a very progressive legislative agenda this year. Again, we have for the past three years, which is really focusing on how do we change the trajectory of how communities support people with disabilities and how do we change the narrative and how do we let people with disabilities be the voice and have the, have the, be the ones who are leading the way on this. So I can talk all day long about what I might think is right, because of my career, my family, my career, my experience, my education, but I don't have that lived experience. And so I really need to learn from them. And, and so that is, what's going to change things to your question about whether or not there's really a chance for this. There's a chance for this. If we have leaders with lived experience like happy and Stan or leading the way. And so at the arc, we want to connect an honor, the disability advocate, activists that have come before us, but we want to connect young people in their families and create like collective access and collective liberation. And we do believe, you know, the seventy-five years of change, um, has prepared us for this new fight.
Speaker 0 00:45:41 Andrea, I have, ah, yes, I have a loaded political question for you. Um, in your opinion, do you feel like there's a difference with how society accepts, helps treats, et cetera, people with disabilities attached to political parties and office?
Speaker 2 00:46:05 I guess, honestly, that hasn't been my experience. Um, we have been able where we're obviously we're a bipartisan organization and we've been able to very successfully work across both sides of the aisle. And we have really strong advocates in, um, in both kind of on both ends of the spectrum. I think the bigger problem is that we have a societal opinion of people with disabilities and especially people with disabilities that are black, brown and indigenous, that they are weak, that they're needy, that they're vulnerable. That they're scary, that they're bad, helpless, mean criminal. And in reality, what we, what we, what we need to flip that to is that people with disabilities are strong and they're capable and they're wise and they're resilient and they're powerful. And we have done such a disservice to lobby for funding at the legislature. And I mean, we, the arc, we, the disability community in general, we the world in terms of our media.
Speaker 2 00:47:07 And so we need to flip the narrative and we need to really show the real what's really happening on the ground, uh, which is that people, um, are humans. They have the same desires and, and, and wants and needs as everybody else. And they have mad capacity because of not in spite of their, but because of their disability, like they have to, they are so wise and so resilient because of so many things that just in their life, they have come to sort of deal with and adjust to and, and learn from, and, and, uh, focus on that. It really is dis a disservice for us to continue to portray people with disabilities as weak Immedion vulnerable and, um, and helpless and need and needing so much from services in society. We have to make sure that in order to, uh, in order for them to be, you know, really, really able to have blinding justice agency, freedom that people know how strong they are and yeah, they need support. And they're going to need support with their daily living skills. People, some people need help to, you know, take a shower in the morning and some people need help to take their medications and do their grocery shopping. And that has nothing to do with their capacity, um, to really be able to be powerful citizens in this world. So I think that to me is kind of the biggest thing that we, the biggest challenge that we face and the biggest thing that we have to just flip.
Speaker 0 00:48:38 So Andrea had someone talking about disability justice on hair a little while ago, and she was commenting how, and I hope I'm going to get this concept right. But that how she feels like the race, you know, justice and disability, justice is so separated and really you can't separate them. And if there's kind of a disconnect there, sometimes it is D w what are your thoughts on,
Speaker 2 00:49:09 I would a hundred percent agree with that. Uh, I think that, you know, the structural and systemic constructs that we have in our society that have been created to make sure that people with the most privileged can continue to be in those spaces of privilege and power. Um, I've heard some pretty amazing, uh, disability activists in the disability justice movement. Talk about how, if you really look at how racism was constructed in our country, it was really based on enablism theory. It was really based on making sure that we thought that people, uh, who were black, brown and indigenous were, um, you know, unintelligent in capable and able to thrive outside of, you know, slavery and the institutions they were caught up in themselves. And so Abel ism is actually really kind of like the root, like at the root of so much. And it's so intertwined with racism, that it is very, very, very hard to separate the two now. And in my opinion, they are the root causes of sort of all of the strike that we're seeing in our community today. And they are exactly what we need to address in tandem, ableism and racism.
Speaker 0 00:50:32 I have to wrap this up. We have about, I'd say four good minutes. Is there anything you want to leave us with?
Speaker 2 00:50:41 Well, this is Andrea again, and I just want to thank you so much for having us here tonight. We really want people to be involved in this work and transformation with us. We need, especially, we need people outside of the disability community to get involved in this work, and we need people with lived experience to be leading this work. So I would say, please go to our website, www dot arc, minnesota.org, for more information about us and ways to get involved and reach out, contact me. And, uh, w we would love to get you into the fold of this movement.
Speaker 0 00:51:21 Thank you so much. Um, anybody else, standard puppy?
Speaker 3 00:51:28 I'm sure. Again, I just want to thank you for the opportunity, and I'm going to kind of echo and piggyback on what Andrea said. Um, as a queer, uh, Korean American, uh, who grew up with Caucasian family, it's very, very important and everyone's voice needs to be heard. And the only way that is going to happen is if people come and join us, come and talk, come and learn, come and find out, ask questions. So we would love to have you. And, um, it is an amazing place to learn and grow. Um, so I would love to see more people, uh, and especially as a queer person, I will have to see more representation with that as well.
Speaker 0 00:52:16 Thank you, Stan. Anything.
Speaker 4 00:52:19 Yeah, I'll just echo, um, what, what they just said and just emphasize the urgency. And, you know, this work is just as important as a school district or a hospital or, or other entities. Um, a lot of times we just don't talk about it enough. Um, and so we really want to, we'd love to come back and continue this conversation with you because we just need more people to know what's going on and how they have.
Speaker 0 00:52:44 Absolutely. Thank you very much. I want to let everyone know. You've been listening to disability and progress. We've been speaking with Andrea Zuber. Andrew is the CEO of the arc, Minnesota and Stan Allen. Stan is board of directors and co-chair of arc Minnesota, also cheap chief communications, officer of vitals, aware and services, and also poppy Sundquist. Poppy is the board of directors member of arc, Minnesota, and also is the para professional for St. Paul school district or a St. Paul schools. And my name is Sam and the host of the show. This has been disability and progress. The views expressed on this show are not necessarily those of cafe I or its board of directors. My name is Sam again, thank you very much, Miguel, for engineering, Charlene dolls, my research team. If you want to be a part of the email list, you may email me at disability and progress at sound, jasmine.com, and we can get you on so they can find out what's coming up. You can also submit suggestions that way. I'd also like to thank Hannah for helping put this show together. Thank you so much. And thanks for listening. Good night.
