Skip to main content
With An Eye to the Future

Zoom Text:

2017: Speakers Help Launch "With an Eye to the Future"

Justin Smith

White Bear Lake High School Student, Self-advocate, Disability Rights Advocate

"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."

"Thanks to assistive technologies like CART captioning, which makes it easier for me to hear, my communication device that helps me speak, and the 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."

Justin Smith
Justin Smith

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.

David Durenberger

Former U.S. Senator from Minnesota (1978-1995) and Co-Sponsor of the ADA

The former U.S. Senator began his remarks with, "Hi, I'm Dave Durenberger and I'm aging into my disabilities." He told stories about the day the ADA was signed, about the threats received by the female Star Tribune investigator who told the world about the inhumane conditions of the state hospitals, and about the ups and the downs of health care reform in Minnesota.

Sen. David Durenberger
Former U.S. Senator David 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.

But it's not America. It's now who we are. It's not who we can be. It's not who Justin is. It's not who Colleen is. It's not who Mom and Dad are. It's not who any of us are, I don't think It's even the people in this building. They talk like it sometimes, but I don't think it's even them. They're living in communities just like we live in. Don't you think they hear the same thing? Don't you think they see the same thing? Don't you think they feel the same thing inside? They just haven't learned how to translate that into action, which is the gift of all the people in this room and the stories that you've heard today.

I sat here because…listening to Colleen's story because my wife Susan, who's on a plane to California today just finished a book that's going to be published next April by the Minnesota Press on how did Luther Youngdahl… was persuaded to take on these institutions… this institutionalization in Minnesota back in 1949. The victory in 1950, which was snatched away by real conservative Republicans in 1951… so he took a job in Washington as a federal judge and never came back and the whole movement started to go like this. And Susan captured in this book that Colleen was talking to you about, about who we are as Minnesotans. Who we were in 1940s, the heroes and heroines. And she captures a few of our prejudices.

Geri Joseph and Geri… what were they… Hofner. Yes, Geri Hofner was a brand-new reporter at the Minneapolis Tribune. She wanted to go to The New York Times. Can you imagine a woman at The New York Times? Wow, not in those days. But she was going to go to The New York Times.

They talked her into staying at the Tribune, they promised her this story. She went to see the Governor, and he said, "If you publish?" And she said, "I'm going to go into all seven institutions." And he said, "If you do and you publish stories, I'm going to have your job." Whew. So she goes back to her boss, Bower Hawthorne at the Trib, and he says, "Ah, forget it." So he goes with her, tells the Governor, "She's going to do these stories regardless," you know. "You'll get to see them before they go in the paper," but he can't change a word of it.

So she writes these stories. And a year and a half later she gets the highest reward for journalism in Minnesota from the Minnesota Newspaper Association. Why? Because it was a really good story, number two, and because they thought she was a he. Believe it or not, the Minnesota Newspaper Association thought Geri Joseph was a man. Okay. So we've come a long way. Right? We've got a long way to go. What happened yesterday in Charlottesville where Charlie went to school in Virginia is still happening all over America, you know? Yes, we have a long way to go. But we have built the capacity to get there. And not just in this room but in tens and hundreds of thousands of people in this state. Our capacity is still there. We are who we are. Our institutions are really unique institutions.

So that isn't exactly what I planned to say, but I'm going not to tell you the story of the Americans with Disabilities Act. It's been told and retold. I've got to tell you the greatest day in my life was that time in the third or fourth week in July sitting on the mall and watching with thousands of people as President George H. W. Bush came out to the podium and the band struck up "Hail to the Chief," whole bunch of people stood up and all you could hear in the place was, "Down in front! Down in front!" And I knew I was in the right place. I knew I was in the right place, "Down in front." Wow.

What a gift is public service. What a gift is the teaching profession, the point that Justin made. What a gift is any one of your opportunities, the fact that you're here today. And the question for all of is: What are we going to do with it? You know, are we waiting for somebody else to take the lead? You know, will we do it? When will we do it? How will we do it? How will we get started? So the future? And the last thing, because I was asked to make some reference to healthcare, I've been at this for 51 years too, which is a heck of a long time to say you didn't get any place because they're still doing R and R.

But, you know, every once in a while you come up against a crisis. When the biggest industry in America, a three-and-a-half-trillion dollar industry, is about to face the reality of wake up, find out what's wrong, and get it right. And Obamacare got most of it right. But Republicans spent seven years trying to belittle it and tear it down and make sure it didn't work. It's that simple. I'm saying that as a Republican.

It's that simple. It will work. It can work. And America is the place that it can work. Because we do believe… and I've got the data from your study back in Minnesota Citizens on Health Cost Containment that tells us that, by a fraction of 80 to 20, Minnesotans believe that it is our responsibility to make sure that all of us have access to high-quality healthcare, which only means it has to be affordable and it has to be effective. And the people that know how to do both are in the health professions today. We just need to change the incentives.

And a lot of us know what it takes to do that. Again, because it's the right thing to do. This is the right place to do it. Maybe the only place to do it. So thank you for the gift of being here today. And if there's anything I can do to add any dimension to anything I've said, I'd be glad to do it. Yeah.