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With An Eye to the Future

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The Future of Disability Rights

These advocates were interviewed during February 2018.

Bonnie Jean Smith

Q: What do you see as your future and the future of disability rights in Minnesota?

A: In Minnesota we still have to watch, we still have to make sure we are going down the right path. The thing is we can never just relax and assume someone else is going to do it. We have to watch and we have to check and we have to monitor and find out, and if you really want something, but you need to stand for something, you cannot sit over there like it's a reality TV show and do nothing.

Q: Do you challenge others to step up, take a position and move forward?

A: Always, because it's easy just to make fun of someone and put up those little GIFs and laugh, but you're not making a difference. If you can make a difference, it is your responsibility to make a difference.

Q: Based on your family's experiences, what wisdom or advice would you give to others?

A. Especially to parents, it's extremely important that you understand if your child is a person with a disability, you understand that disability, and then look and see where your child fits in that disability, because if you don't understand it, it's like not having a baseline, so any decision you make, it's not going to work. It is like me saying, "Okay, give me directions from my grandmother's house to where we are right now, go," but you don't have her address, so I've seen a lot of parents do all of these different things all over the place, and it doesn't work, but that's because they didn't have a baseline. Always find out about your child so you can do person-centered thinking, and one way to start with that is to do a person-centered thinking profile, do a person-centered profile on yourself, because if you can do that, then you can focus on your child and see what they like and what they don't like and build from there.

Ricardo Mourao

Q: If you could offer any wisdom or advice, what would it be?

A: My message to others, think of all possibilities. Think of your future of all possibilities in the future. You should think of the consequences before the action. Not just the consequences which you want, as you realize that things never goes the same way, never goes the way you want it to. And then before you decide to do something, think about it.

Q: What do you see as the future of disability rights in Minnesota?

A: Well, I think the future is great. Because I think I see in Minnesota… people are really willing to help each other. And they don't, for example, my disability, which is blindness and brain injury, people don't want to take advantage of it. They want to make you feel like I don't really have a disability.

Q: How have you been able to help people with your story?

A: Well, once a month I go to Plymouth Police Department when there's a person, which the cops stop for drunk driving or something. The judge… or at least ask them to go to one of my presentations. So, I can talk to them and then he can… my presentation is in Spanish and since I lived in Puerto Rico for such a long time, I know how they're… what they're thinking, the very same way now, thinking in Latin America. And excuse me and I don't just… when I give the presentation, I don't just say, tell them, I tell them the kids, you know, what I tell the kids and family, which are teenagers and stuff, because they… the more… people who do most things without really thinking.

Q: Now you're trying to live the best life you can?

A; Yeah, because when I had the… …after my accident, I don't think that I lost my vision and hurt myself in any ways, I think I've gained so much, many things… which I know… how to help other people better. And it's actually showed me what's really valuable in life. Before, you always think money and all the material things. Now I know that friendship, people… you know, like putting a smile on peoples' faces, that's really what's important.

Q: Are you getting support from your family?

A: Oh yeah, my family, they took care of me, like when I was in bad shape in the hospital. All my rehab, they were always there too. To just show me that they help me and that whenever I need something, they would help me in any other way. And they would never make me feel alone. I feel like I always have my family and friends to rely on.

Kelly Kausel

Q: What would you consider to be your greatest personal achievement?

A: One of my greatest personal achievements would be reducing the TEFRA parental fee three years in a row. I've been a huge champion for it and I've testified on it and I've gotten other parents to come onboard to help advocate for that.

Q: How rewarding is it to be part of something that influences change?

A; I think it's very rewarding, but I caution we have a long ways to go because there's many families who still, including my own, who still do not have affordable healthcare that will pay for medically necessary therapies or services.

Q: What do you see as the future of disability rights in Minnesota?

A: My future with the disability is to continue to make inclusion the number one priority and have policy around the inclusion. So what I mean by that is we're not just having people live in a community. The person, you know the individual, is actually part of the community, part of, you know, community classes, community events, a music in the park, 4th of July celebrations, parades. There's too many people that just live in their community but they're not part of their community, and that's what I want not only for my son but for everybody.

Nathan Colomina

Q: What would you consider to be your greatest personal achievement?

A: So far, I believe graduating high school is my big achievement. I haven't gotten that far in life to earn so much right now, but I'm hoping to get some accomplishments in the future.

Q: Did that take a lot of work?

A; Yeah, it did. I barely passed, but hey, I managed to get through it.

Q: What do you see as your future and the future of disability rights in Minnesota?

A: Honestly, I kind of see myself living kind of like an honest normal life without being labeled an autistic person as being a bad thing, just a unique deficit that most people, they grow to under-appreciate.

Q: You've graduated, have a job, and are a member of society. Tell me how that's going?

A: Pretty good. I'm currently working at Transitions, going to be there until like this, at the end of this year, and going to be like my last year and right now, I'm still living in my community of Waconia and I'm currently working part-time at Mackethun's.

Q: Is that rewarding for you?

A: Yes. Very much rewarding. I have a stable living, I'm able to pay my rent at my parents' place, and I'm kind of living a normal-ish life and hope to achieve greater heights.

Xochil Flores

Q: What are the challenges of being a parent with a child who has a disability?

A: There are several challenges. When you have a child with a disability, patience is very crucial. The time that you are going to contribute with a child with disability, because besides her, I have also two other children who also need my attention and I am not able to provide the needed attention to them because the child with disabilities requires that attention.

Q: If you could change any policy or program what would it be?

A; I don't know if this is a policy or a norm, but I would like that norm or policy to provide more support, more opportunities for the child with disability. For example, more opportunity in reaching a job, obtaining a job.

Q: Any advice for others in similar situations?

A: I have learned that any human being can have a disability, mental or physical disability, but also I have learned that any normal person can fall from a building, can have an accident and can suffer a disability also. My advice is that we all should treat each other in equal terms with equality because we all have the same opportunities to lead a happy life.

Paul Korpela

Q: What do you see as the future of disability rights in Minnesota?

A: I've always believed this to be a very progressive state, and I think that with the programs that are in place and the people who are coordinating them, facilitating them, that they can be the leaders that we need to help bring that to more of the forefront of society to have people be more understanding of the challenges that people face who have disabilities. You know, working, being a former Partners graduate, being at the workshop here today, and the continuing education of those people, and being able to be somewhat of a mouthpiece for people who need to be advocated for, who can't advocate for themselves, I believe is everyone's responsibility, to be honest, that we're all citizens and we need to take care of each other. This is no one person's battle. It's a group effort.

Q: So you're seeing progress made, you are optimistic?

A: I'm not concerned that things are going to get regressed or pushed back. I'm an optimistic person. I believe in the human spirit. I believe that people want to do the right thing, that they're going to… that deep down they want to help their fellow man, and want to make sure everybody, not just gets a fair shake, but isn't looked at as someone less than… that they don't… nobody deserves that.

Lyndsey Reece

Q: What would you consider to be your greatest personal achievement?

A: Well I actually just completed my doctorate in health care administration. Yep, that was… and also having children of my own is a great achievement. I see it as a challenge first of all because we're… there's always something… like stepping in the way, but my main focus is health care access for individuals with disabilities and making sure that they have access for all of them with every individual disability not just some of them … healthcare, dental care and ensuring that they have actual opportunities to have independent living and just being able to live their lives. So… but my main focus will be the healthcare focus.

Q: Where do you think we are right now?

A: Right now, I think we're divided. where there's part of the community that really wants to step up and make a difference with these… individuals but I also think there are some that are holding back, 'cause there's funding issues and there's a lot of stigma with individuals with disabilities wondering what… like… what direction we should go in. So I really think there's a push for more healthcare access and also more independent living, but it's kind of getting stalled, I feel.

Q: If you could offer any wisdom or advice what would it be?

Ask. Ask questions. Take a stand. Look for resources. Resources are out there. Don't be afraid. If people tell you no, there's another way. It's not… there's no dead ends to anything. So keep asking. Keep fighting. Push past the red tape. That's all I have to say.

Kelly Lee

Q: Are you involved in self advocacy?

A: I'm very, very involved in self-advocacy. It's… self-advocacy is something that people with disabilities need to learn and stick up for their rights. There's a lot of disabilities who can't do that. There's a lot of disabilities who don't know about self-advocacy. I think they should get involved and get to know and everything. But, there's a lot of people who can't go around by their self. They need assistance. But, I do very well.

Q: What do you see as the future of disability rights in Minnesota?

A: Disability rights is some… it seems like people keep on stepping on us. But, we got feelings, too. I don't want nobody to step on me. No. Because… because I have a power and stuff like that. Now, the people who step on me, they might as well just leave me alone, because I don't like it.

Q: Do they know who they're messing with?

A: They don't know who they're messing with. They do not know who they're messing with and everything, so… um-um, um-um (no). I see, when I come here every day, I say "hi" to my coworkers, "How was your night last night?" And I tell them what I'm going to do after work. And they ask me when I come back the next day, how did your stuff, everything with me, went. I say "It went good, it went good, it was nice" and everything. Because we… talk about… we want to go to the Capitol. Now I love the Capitol. I go to the Capitol, though, sometimes. And we talk to the legislators there and everything. But hey…

Q: What things have you learned through your experiences that could help others?

A: My mother told me don't use the word "can't" in your vocabulary. That's the main thing. And see, when I was little and stuff, I said, I kept saying, "I can't, I can't, I can't, I just can't" and everything. My mom would always say "Don't you dare use that word can't in your vocabulary." And so I said "all right." My message is always the same. I just don't want nobody to talk for me. Because they don't know about me.

Kelly Korpela

Q: What would you consider to be your greatest personal achievement?

A: Well I've become involved with a nonprofit after completing Partners with Policymaking, so I'm a family, parent support navigator with Family Voices of Minnesota, so I'm helping other parents connect with other parents who have kids with special needs, medical needs, or disabilities, connect with each other to provide support.

Q: What do you see as the future of disability rights in Minnesota?

A: I think we have a long way to go. I think as parents, we don't come into this job anticipating having a child with high needs, and I believe in my experience that I thought resources would come to me faster, easier. I had no idea I would have to search and reach out so much to get the support my family needed. I went into it thinking the doctors and the school district were going to point me in the right direction and provide the support I needed and that is definitely not the case.

Q: Do you have a message for anybody starting their journey as an advocate?

A: Take deep breaths. Things will come together. Never lose your fight. It feels like every day is a new challenge, be it with the school, trying to gather those resources, trying to stay positive, trying to not to have a mental breakdown. Things do improve and we're able to connect with another family that has needs like yours, it just seems like that's the extra pat on the back that you need that you feel like you may be missing.

Katie Swenson

Q: What would you consider to be your greatest personal achievement?

A: My greatest personal achievement is not giving up on my son. He's severe on the autism spectrum and so many times in his life, we've hit dead ends and we've been told all the things he can't do. He'll never be potty trained, he'll never be able to go out and have a typical life and all these things, and I was able to turn that around and find the positives in it and we still live our life in a relatively normal way. So not giving up.

Q: What do you see as the future of disability rights in Minnesota?

A: I am going to keep advocating. I'm going to keep talking. I have a website, I try to do as many interviews as I can, and the whole purpose of it is to show that severe autism is real, to show that there can be a scary and sad side to the disability, and a positive and a joyous side, so I'm going to keep talking. As for the future of autism, I hope it becomes more mainstream. I hope it's not hidden anymore. I hope we all start to understand when you see a kid melting down in a grocery store, it's not bad parenting, it's maybe just a kid that's really struggling.

Q: If you could offer any wisdom or advice what would it be?

A: Don't give up when someone tells you no. I spoke about this yesterday. If someone tells you a resource isn't available, help isn't available, the school can't help you, push back, be loud, don't give up, talk to other families, build your village, and I guarantee there's a way that someone can help you.

Reid Scheller

Q: What do you see as your future and the future of disability rights in Minnesota?

A: I see myself continuing to live independently, but having a lot of battles with transportation and what to do once certain family members are… and many, many years down the road, and what happens when certain family members pass and what's going to happen to me there, and I see myself trying to keep looking for jobs, and hopefully, trying to find success, but I can't predict that. I know I will find and have success eventually, but I'll keep working toward that. I'll just keep working toward achieving my goals. In terms of disability rights, I see it being a very, very, very constant battle with this administration and other administrations beyond. I just see it always seems to be one step forward and two steps back, and unfortunately, we can keep working, but in some ways I see a light at the end of the tunnel, and in some ways I just don't. In some ways I'm very hopeful and optimistic, and in some ways I'm distressed, some ways I'm just concerned, some ways all I can do is wonder and just hope.

Q: You refer to them as battles, are they challenges or are they battles?

A: They're part challenges and part battles to some of these things, these arguments, they're really life, and then some, you have to get a little more appropriately defensive and into appropriate protesting, whereas, in some it's easier and it's just a personal challenge, like my own personal challenges I can work on, whereas some of these major scale things that are going on in D.C., you really have to advocate very hard and in some ways protest and really have to do a lot to wake up others in the State of Minnesota and across the country.

Q: Was the biggest crossroad in your life when you were given the chance to live independently?

A: Yes, I've also, like, said I've had many other things, other than moving out, that have happened to me in my life that have been really good. I've had more stuff that's been good and bad in my life, I could write a book about it, and go on talking about it all day, but yes, that is in terms of relevancy, yes, that is one of the biggest things that has helped me grow a lot with the support of family and friends, and I just have more supporters than non-supporters in my life. I am very, very lucky and fortunate.

Q: What advice or wisdom or advice from your experience do you have to share?

A: Work hard, be determined, be strong, don't give up, just keep pushing, give it all you got.

Jaclyn Landon

Q: If you could offer any wisdom or advice what would it be?

A: To keep asking questions. You know if you get or… to keep, to keep asking for people. And especially join parent groups. You're going to get huge information from there. I mean, I think a lot of us are used to doctors or the county you know we rely on information from someone of authority, but I find that a lot of the best information, and the best way to navigate these programs, and to get through the red tape, is to actually talk to other parents who've already done it, and they can help you cut through that red tape and make those times a lot shorter, and can tell you the ins and outs of the programs, and how they really work for either where you're going to go or where you already are, and what you need paid for and how you want to do it.

Q: If you could change a policy, program, or state law, what would it be?

A: I would change the time, the timeline… to getting services covered. The variations from policy to policy… you know, it's very hard, it's very stressful on families, the financial burden gets out of control very quickly. It needs to be covered and it needs to be affordable right away. As soon as the diagnosis is there, you know, we need to start services and not start fighting.

Elizabeth Peterson

Q: What do you consider to be one of your biggest accomplishments?

A: One of my greatest accomplishments is that I was able to graduate from college and be able to go to college. The reason I was able to go to college is because one of my high school teachers actually wrote to one of the college culinary arts people and asked them, saying that this person is very responsible, you should accept her to the program, so then they did.

Q: What do you see as your future and the future of disability rights in Minnesota?

A: Just to be able to do things, even though I have a disability, it doesn't matter. It's really very important for me to be able to live on my own and be independent and be able to do things on my own.

Q: Where are you working now?

A: Right now, I am working at Lund's and Byerly's. I've been there since 2011. I've bagged groceries/cashier/work in the bakery and I really enjoy it there.

David Belcourt

Q: What goals do you have for yourself?

A: That I'm trying (to) move in an apartment. I want to achieve my goal for that.

Q: [Off camera] Of independent living?

A: Yep.

Q: What do you see for your future?

A: I would say that I would like to get out a job. Job at… I want to work at a theater.

Q: What would you say to others about staying positive?

A: I would like, be positive, like you said.

Q: Does living independently make you feel good about yourself?

A: Yeah. Because I've been cooking. I've been cleaning at this house.

Q: How would you like to become more independent?

A: I would like to get out (in the) community and show I can, like, you know, find a job. A job right there, yeah, and so I can see that goal.

Q: What advice do you have for others?

A: People, you have a right to stand up. Like… stand up for your rights, and you can also advocate yourself, right.

Annie Newville

Q: What do you see as your future and the future of disability rights in Minnesota?

A: What I see is that I am going to have to advocate for my son and for others with disabilities, especially since I live in greater Minnesota, not everything is created equal, we don't have the treatment centers, we don't have the options. There are programs that the State have that aren't even available outside of the Twin Cities, so what I would like to see is for people with disabilities to get the services they need even out of the Minneapolis area. I don't want people to have to leave their communities to try to make their life better, but then they're losing their support system, they're losing their families.

Q: If you could change anything, what would it be?

A: If I could change anything, it would be the differences in the counties that you live in and the services you get. In some counties, the social worker can come to you and say "I think this service would benefit your child or this person with a disability and will help them lead a better life." In other counties, such as mine, they have a don't ask, don't tell. The social workers are not allowed to tell you about a service unless you inquire about it, and I know there are other counties out there like that, and then again, when you get into greater Minnesota, I'm sure there are other counties that don't have the funds.

I don't want there to be wait lists for these people to get the services they need. I also would like to change something with autism evaluations. Currently, people are waiting six to nine months to get these evaluations, and that's crucial time for these children when their brains are most pliable.

I would increase the amount of places that would offer these diagnoses and get rid of these wait lists so that people can get diagnosed. Right now, the average age for the child with autism to be diagnosed is four, but yet the American Academy of Pediatrics is recommending that every child be screened at 24 months because we know that the sooner we intervene and the sooner that we help them, the more skills they're going to have and the greater potential for maximizing their learning.

Jason Blomquist

Q: What would you consider to be one of your greatest personal achievements?

A: There's a few things, I finished my two-year degree in human services. I have been able to live independently in my own home, and I've lived independently for a total of 26 years. I was also able to help get my wife out of a group home situation, and she now lives independently with me, with our PCAs, and that has been for the last 15 years, when we were first told that it wasn't possible and that she didn't have the wherewithal to do that, we got an attorney involved, and the rest is history.

Q: How has having the ability to be independent helped you to grow?

A: It's helped me to be able to see a future, I can look forward to making other accomplishments, I can look forward to getting a new van when I need it here coming up in the next couple of years. I can look forward to making some home improvements and doing some traveling and all the other things that any individual wants to look forward to, or have a goal to accomplish where, in some of those other settings, it's just merely a day to day existence of a person being maintained, and there's no real self-expression or real feeling of satisfaction for a lot of those folks, they are just placed in a group home and placed in a job situation and I have a lot more freedom of choice. There's a lot more responsibility that goes with it, which can be stressful, but I wouldn't give it up for anything.

Q: What do you see as your future and the future of disability rights in Minnesota?

A: I wouldn't be able to predict the future as I don't have a crystal ball. I know that it's going to be an ongoing fight, because we're seen as more of an expense in political eyes rather than an asset to the community, which should be protected and given the adequate supports that people like myself and my wife and many others need in order to make a contribution to society. So I just see it as an ongoing fight, and that is why I am here to do what I can to bring light to situations, and that is why I serve on the committees and things that I do, so that I can do my part to get the message out there that this is what we need to live our lives, and this is what is going to happen to us if you take those supports away, and do my best to prevent that from happening.

Q: Do you have anything else you want to talk about, any message to others?

A: Just for people to call your congressman, call your senator, let them know your story, let them know that what's proposed is not just a matter of dollars and cents on a piece of paper or a computer, you are literally playing with someone's livelihood, and in many cases health and safety of human lives. People with disabilities have made huge contributions to our communities, and just deserve the right, with the amount of support that they need, to continue to do so.

Katie Whitnah

Q: What do you see as the future of disability rights in Minnesota?

A: Minnesota is incredibly progressive. We have leaders in our community that are building strong advocates because it's necessary. There's a division between funding, there's a division between cultures, and I think advocacy for people who have intellectual and developmental disabilities is something that unites us.

Q: Do you feel like your kids are going to have the same opportunities that others have?

A: I think you have to be careful when you use the word "same" because that can mean different things to different people and words are really important. Will my children have opportunities? Absolutely. Because they have a strong advocate in their corner. Will they look exactly like everybody else? Probably not. But will they be successful? Yes.

Q: How has the school experience been?

A: I think to have great results back, you need to put a lot of effort in and we've chosen to do that. My family is connected to the people who make decisions in our community by choice. We put a lot of time, a lot of effort, and support into that, and we see the same return coming back our direction.

Nathan Barclay

Q:  Tell me about the opportunity you had to play piano at Menard's.

A: Yeah, its actually quite interesting, because I was given the opportunity to sit down at the piano and start playing the piano because, you know, there's, like, no other person can accomplish something like that, you know, in playing the piano.

Q:  And you aren't reading sheet music?

A: No, it all comes down to memorization and, and hours of practice, it takes, you know? It just so happens… so I basically have a track to play along with it. So something like, you know, like say like Canon in D, I'll hear the audio first, then try to replicate it, and if I can't get it correctly, Ill play it along with the track. So that's how I hear it, you know?

Q: What do you see as the future of disability rights in Minnesota?

A: Well, I, well, I strongly believe that anyone with a disability, regardless of what your disability is, should have an opportunity to go out in the field and search for that job that they really want, you know? And I think that having a disability is also a very unique experience too, because, because then that person can understand what your disability is and, and how it helps them, you know, how it helps them understand what they mean by that.

Q: How important do you think it is to have a positive attitude?

A: Well, for me, I'm a people person really. So I like to, you know, talk to people, say "Hey, this is what I'd like to do" and other things like that.

Q: What is your message to others?

A: Well I would say, you know, if you have a disability, that's cool, because, you know, that gives you the chance to do what you want as your own self. Just be yourself, really, you know?

Q: Are you concerned that other people look at you differently?

A: Not really, no. My biggest concern is well sure, that one person might look at you funny because if you have that disability and that kind of throws that person off, you know, like, looks like he has a disability. But, but really that's just part of you, you're just part… it's what you're born with, you know? You can't really help it.

Q: How do people respond when they see you play piano?

A: Well, it's actually… kind of funny because sometimes I'll get that, "Wow, like, he's not reading any sheet music" expression, because that's what I like. I like to make people go "What?" Pow, their mind is blown, you know? And that's what I like to do. I like to make people happy or surprised of how I'm playing the piano, you know?

Q: What advice do you have for somebody who wants to do what you do?

A: Well, my advice is, well for me, as a keyboardist, honestly, I would just say, you know, practice, practice and practice.

Q: How about your advice as a self advocate?

A: Well, just, just be yourself really, you know? I mean even if you can't play the piano, that's perfectly okay. You can still listen to music though. That's what my thinking is.

Lea-Sue Sandberg

Q: What do you see as your future and the future of disability rights in Minnesota?

A: Inclusion in the community is my biggest goal, because everybody should be able to have a job and live where they want to live in the community. That's really important to me.

Q: If you had a conversation with a decision maker, what would you tell them to change?

A: I would tell them that they need to be more proactive and on top of things They should look at beforehand, and before it gets really bad. Don't wait until things get worse because it's not helping us to be any better as people, because we need to be proactive and ahead of time so that we can help everybody that needs the help that they need to get.

Q: Do you have a positive outlook about what tomorrow could bring?

A: Yes, I do. I hope in the future that they have more services and more affordable housing everywhere in the Twin Cities Area, and no more waiting list, and just make it easier for everyone.

Q: What do you think of this project and of asking people like yourself what they think?

A: I think it is a great idea because they need input from everybody's perspective, even parents of children with disabilities and self-advocates like myself, so we can make a better future for people to live independently on their own, as independent as they can.

Sally Anderl

Q: What is the future of disability rights in Minnesota?

A: I think that depends on the people that need those rights as well as the people that they live and love and are in community with. I think, like anything else, the tighter the budgets get, the less the money gets, the more fighting there is among people for services, and that is not fighting in the sense that they were going to come after you, it is in the sense that hey, our need is as great as yours, why are you getting this, or why are you getting this, and I am saying what does each person need, not everybody needs the same amount of support, but how can you do that support fiscally being responsible, educationally being responsible as a community, being responsible for those that you want to be participating numbers? So disability rights in Minnesota are just like any other rights, like civil rights, like any kind of rights. They are always need to be guarded, protected, supported, encouraged, and people aware of what everybody needs.

Q: What is your message for tomorrow's advocates?

A: Learn as much as you can, as frequently as you can, in as many places as you can. Continue to network with people with and without disabilities. Some of the people that are the best informers for you are the people themselves who have issues to deal with. They are your best teachers and the families that deal with things and then the providers. There is nobody whose lives don't interconnect and interact with each other, and so everybody has a piece of the puzzle and if we could just see things from all of these little pieces, we might be able to pull it off together and really have a whole village of support for people that benefits everybody in society, not just the person with the disability, not just the provider, not just this, not just that, but everybody.

We want them to be contributing members of society whether they are paid, unpaid, whatever. Everybody has something to contribute. Nobody is so disabled that they can't contribute something, so you have to realize that no matter what your child, your adult, your person, your senior parent, whatever they have, they still have something as long as they are a human being, they still have something to contribute to society.

Judy Weiser

Q: What kind of supports, what kinds of programs are you involved in?

A: I live in a group home, so I get support with the DD waiver and they have a job coach that helps me find work. I have a therapist to talk to, a psychiatrist. It would be better if I could live on my own again.

Q: If you could change anything about the assistance you get, how would you recommend things change for you?

A: I am on Social Security, so I was hoping I would get more money instead of it all going to rent.

Q: What would more money allow you to do?

A: To go out and look for work. I mean I only live on $100 a month. That is my personal needs check that I get from my Social Security.

Q: What do you tell others about your personal experiences?

A: I always tell them to stay in school or get a job or if they do not have the job, they can get help from the government.

Q: What kind of volunteer programs have you participated in?

A: I volunteer for the American Red Cross, I volunteer for the Salvation Army, and the Twin Cities marathon.

Q: What do you like about volunteering?

A: It is a good feeling to be able to help somebody else, or help somebody in need. I believe in helping someone who is a lot worse off than me.

Sherri Melander-Smith

Q: Tell me about yourself and what you consider to be one of your greatest personal achievements?

A: Spirit-filled, joy-filled, full of peace. I believe in equality of everybody, and live my life with a deep set of morals and convictions that we're all created equal and we all have equal opportunities and equal rights to living a healthy, happy life. My biggest achievement has been raising my son, Oliver Smith, who is in the United States Naval Academy. He's six foot ten, and I call him my giraffe on roller skates. He plays basketball, and he's just a great human being, and I am so proud of him every day. I am so blessed to be his mother.

Q: What do you see as your future and the future of disability rights in Minnesota?

A: We're at a very critical point right now. I think as a people, we have to decide where are we going to go with this issue? Do we really believe the things that we have thought ourselves to believe? I mean this Minnesota Nice, how far and deep does that go, are we really our brother's keeper, and what does that mean in terms of what we're willing to give up individually for the benefit of the good?

I personally think that people with disabilities have been underserved, they've been underemployed, and I would like to see people reach their full potential, all people. People with disabilities, when we include them in a conversation and when we include them in the economic social status of our communities, we're opening the door to a broader range of ideas and people and experiences and talents, and we all benefit as a community when we allow a space where each of us has a place to live.

Q: Where do you think we could be doing a better job or delivering more services?

A: We have to be sure at this critical time that we do not do any cuts in federal funding, state funding. These are critical times, and it's kind of like, well, put your money where your mouth is. If that is really what you believe, then let us put it into action. We have been talking a long time about disability rights and human rights, disability rights, our civil rights, and now is the time, what we've developed as a society, where we can put those values into place. So I'd like to see us not cut any of the social service programs in terms of Medicaid. These are critical programs for people to live their lives to the fullest. People depend… their very lives actually, depend on these services.

Q: In your role as Miss Wheelchair Minnesota, do you have a message for others?

A: My message is to live your very best life no matter what happens, and I literally mean no matter what. Life can get pretty difficult, and at some point most of us will have to choose how we are going to accept that reality. Are we going to live our life to the fullest or are we going to cave in and just say, "Oh wow, I'm 65 now and I have only got five more years and then I am going to (?) you know, and then it will all be over anyway." I mean, that is not a way to live, so I just teach people to be happy and joyful and to live the best life that they can.

Minnesota Governor's Council on Developmental Disabilities Launches Legacy Project

The State of Minnesota held a Grand Opening of the State Capitol the weekend of August 11 – 13, 2017. Class 34 Partners in Policymaking® Graduate Justin Smith and former Senator David F. Durenberger presented.

Justin Smith, Class 34 Partners in Policymaking® Graduate

Thank you for being here today. I cannot believe that I am here presenting with one of the authors of the Americans with Disabilities Act and a woman who has done so much to improve of the lives of people with disabilities, from helping to close institutions to starting the Partners in Policymaking Program. Thanks to assistive technologies like CART captioning, which makes it easier for me to hear, my communication device that helps me speak, and power wheelchair that helps me move, I can accomplish so much more and be so much more independent than if I had been born at an earlier time.

Let me tell you some stories about my experiences living with disability and my dreams for the future. Imagine a small group of high school students sitting around their computer in my bedroom. There is laughter, sharing ideas, [inaudible],the plan for our history class presentation. I have my section about civil rights, disability rights, and sports in the 1960s ready to add to the lengthy PowerPoint. Another student was creating a Jeopardy game and two guys were figuring out what we would wear.

For me, this was an experience I will always remember because we all contributed to the project in meaningful ways to get that A. I believe that we all learned a lot more about teamwork, respecting differences, helping others and knowing that each of us has so much to offer when working together towards a goal. This was inclusion at its best. Unfortunately, that rich group experience did not happen very often for me except for my church youth group where I was accepted and included like any other teenager.

I have had positive examples of accessibility and inclusion in the real world since graduating high school. My first was with my US history course at Century College last spring. My professor was outstanding. Course materials, presentations and business were online and accessible. He noted the class discussion questions ahead of time so I had time to program responses on my communication device. For one of the first times in my life, I could fully contribute my thoughts and ideas in class. I learned so much, not just about history but how one professor can make a positive impact and difference by just taking some extra time to be organized and think ahead of time about what I needed to be successful in his class.

As we move on carving out the future I hope that educators from preschool through college or other postsecondary options can keep finding the opportunities for meaningful inclusion to happen. The teacher in my 10th grade class and professor in my college history course both talked about how to make learning work for all students, even those of us with disabilities. We need more teachers and professors who embrace inclusion and think ahead of how to make it work for all of their students. These have been some of my experiences in the educational system.

What's next up and what do I imagine for my future? I imagine a future for myself as one where I choose where I want to live, who I want to hang out with, what I will do each day and how I contribute to making the world a better place, the decisions that many of you in this room may take for granted.

As I move through the halls of the Capitol today, I know that I will be spending a lot of time here as a disability rights advocate, volunteering for the Olmstead Community Engagement Workgroup, writing my blog, and speaking about accessibility and inclusion. I need help from the government services to live the life I imagine. I need 24-hour care to help me with all my basic personal cares.

Imagine that you have to depend on another person to give you a drink of water if you're thirsty, feed you if you're hungry and help to go to the bathroom when you need to go. It is important for people to realize that I can do what I do because I have the medical care, special equipment and support staff I need to help me with these things. I know that these issues have become very politically labeled which makes it even more important than ever to make my voice heard and for you to make your voices heard in our political process. Legislation that advocates have brought forth like the IDEA for education, Medicaid, the Olmstead Plan, and more all help me live an independent productive life in my community.

When I met and interviewed Dr. Wieck for one of my high school writing assignments, I remember her telling me what it was like for people with disabilities living in institutions. Her words made a lasting impact on me. She said when you treat people differently, when you treat someone like an animal, you will get an animal. You can imagine what my future could have been like had I been born at an earlier time. It's heartbreaking. I am thankful for all the advocates who have made it possible for me to have more options now.

I graduated from Partners in Policymaking this spring and have learned so much about becoming an effective advocate to continue creating positive change for people with disabilities. John Green writes in the book, Paper Towns, "Its easy to forget how full the world is of people, full to bursting and each of them imaginable and consistently misimagined. We all want to be imagined complexly as the individuals we are, not held back because we look, move, think or speak differently."

I have the same hopes and dreams for my future that many of you aspire to. All of us are unique and face difficulties. There are many times when I feel like an outsider because I do not think people imagine me complexly or know what to say to me or how to talk to someone who uses a communication device. I expect that there are many of you here who have felt the same. I think that we still have a long way to go with inclusion in school, work and life. I want to have a longer list of examples to choose from for my positive inclusion experiences. It really should be more than a handful of positive examples in 19 years.

So what can we all do when we leave here today? Think and plan ahead to make sure people are included in meaningful ways. Go beyond the simple Minnesota nice "Hi. How are you?" and realize that I and others with disabilities have a lot to say and need people to take the time to listen.

Also, what I learned from Partners in Policymaking is the importance of showing up. Show up here and talk to your legislators. Show up to volunteer like I'm doing with the Olmstead Community Engagement Workgroup. Show up to vote. This Capitol belongs to all of us.

Above all, open your minds to new ideas, new people, and new experiences. It takes every one of us here today to choose the infinite possibilities to create a more inclusive society where we see value and dignity in all people.

Former US Senator
David F. Durenberger

I didn't think anybody could top Colleen Wieck until Justin Smith. God bless him. Oh, man. I tell you. I've forgotten what I was going to say. These people are just way, way, way beyond unbelievable. I had a line that said,"Hi, I'm Dave Durenberger and I'm aging into my disabilities." But I am. I'm supposed to be in California but I've wrecked my left shoulder so I decided to stay home and be with you. But I'm so impressed and I'm also kind of choked up - I hope you can tell - because there is nothing like the gift of public service.

My son Charlie over here has been a public servant in the state of Minnesota for his whole, whole life. And I started here 50 years ago up in the Governor's office as Executive Secretary to Harold LeVander, and my learning curve began then and it's going today. It's just absolutely incredible what a gift it is to be in the profession of learning from other people. It's just amazing. And I have to say that to you because the impression you get from everybody in politics and government today is that they ain't learning anything. I mean my own party's spent seven years trying to wreck health reform by calling it repeal and replace. And they've spent six months trying to figure out what they mean. They have no idea what they're talking about. Why? Because not one of them has taken the time to master what you have mastered by your own experiences with people with developmental and other disabilities.

I found a picture that I showed Sarah, who's my oldest granddaughter, this morning. Oh, here it is. Here's a picture of the Senator with little Sarah. Little Sarah is like, in this picture, like a month old or something less than that. Now she's sitting back there, graduate of Bethel, and she's in one of the health professions.

The reason I thought I would show you this picture, and I just found it, is because on May 11 of 1994, the Senate was having its first hearing on the Clinton Health Reform bill. Long awaited. Hillary Clinton's in charge. The health reform bill. So we;re having the first hearing and Senator Ted Kennedy, the famous leader in health reform, is in the chair. And at some point in the program, he takes out his gavel. He notices that I've been going in and out periodically from the meetings. I'm the Republican on the committee. Nancy Kassebaum, my friend and colleague, is the chair and I'm the health guy on the committee. So I'm going in and out to the side room.

So the last time I come out I seem to have like tears in my eyes or something, and so the chairman hits the gavel like this. He said, "I want to call this hearing to recess. And I want to be the first in America to make this announcement. Today was born, in St. Paul, Minnesota, Sarah Marie Durenberger." And he gives her weight, he gives her height, and he said, "Now we know why Senator Durenberger's been kind of grouchy about this health reform." Can you believe that happening in today's United States Senate?

How did he know? I don't know, except that's who we were. We were friends. Our kids grew up together. We knew a lot more about each other than we probably thought we did. And one of the reasons was we learned to share experiences that were common to the people of our state, and those who could express those experiences with everyone else. And then you would find people just like you from another state who hadn't met people like Colleen or Justin or whoever it might be. And you'd start, okay, start coming closer and closer and closer together. And so it was a… it wasn't a magic moment. It's what the United States Senate was always intended to be. I can tell you, and I won't today, exactly what happened, how it's been torn down in the last 20-some years. I can tell you exactly why that has happened.

Jillian Nelson, Council Member

At the August 2017 State Capitol Grand Opening, Council member, Jillian Nelson, offered her support for the Legacy Project. 

Tell Your Own Stories

This has actually kind of been my platform as a Partners in Policymaking graduate, and I'm a very big advocate for helping others learn how to become self-advocates and encouraging them to become self-advocates, and what I do always tell people is "Your story matters, your voice matters, you may just be one voice but that one voice has the propensity to change everything." You never know who your story is going to impact, and who they know, and what they're going to change, and that if you just sit quietly and you don't ever speak up, and you don't ever tell anyone your story, or what you want to happen, you're taking something valuable from the world that you have to offer. Self-advocates, we have the chance to direct our history and create the path of where we want our community to go.

What Minnesota Should Do

I would like to see us as a society, especially as the state of Minnesota, moving past the prejudices and the judgments and the preconceived ideas of limitations, and interacting with people with disabilities as people, not disabilities, and accepting them for who they are. As we move into a technological society, we're seeing a lot more digital bullying and cyber bullying and I would really really like to see that acceptance end the bullying and the exclusion, and have people just more accepted as they are, not as people with disabilities.

State Capitol Grand Opening

I think the grand opening of the Minnesota Capitol is a phenomenal event in our current political climate. I think it's a really great reminder for Minnesotans that this is our building this is our home and our voices are the ones that matter when it comes to making decisions and when it comes to influencing our lawmakers. They work for us at the end of the day. We're the ones at the voting polls giving them their jobs, and it's a great reminder to open up this building and welcome all of Minnesota back, and to remind us that we all have voices and those voices all deserve to be heard.