John Hockenberry:
What a great turnout. It is a thrill to be here. I thank Jim for that introduction. I mean, new father in a sense. Some of you may know that I am the father of two sets of twins. My pair of 11s, well into pre-teens, now, they were just little guys when I was here ten years ago and I didn't even have the second set, who are eight. So a pair of 11s and a pair of eights, and we call our little newborn -- Ajax, we named him -- our ace. So, it's a pretty good hand, pair of 11s, pair of eights, ace high. You can do well with that. And it's only going to improve, you know. For a while, and then, you know, they become teenagers and you all know the end of that story. Anyway, it's great to be here, I mean, certainly being a father and over the amount of time that I've been a father, teaches you just a whole lot about how much can change and how much change goes without really being noticed, because, I think, in the environment that we're in, we're all advocates. We're all attempting to face a head wind, and the head wind involves everything from lack of services, talked about just moments ago, to just a lack of interest and inclusion of people with disabilities in the basic sort of sense of community, the fabric of community that we all live in. And, then, there's a sense of just the invisibility of disability. It just doesn't really register and so, therefore, it doesn't end up as part of the social covenant, or if there even is a social covenant. So I'm here to talk about some issues of language that I think are relevant to that, but I want to go bigger. How many of you saw the Academy Awards last night? Right. Lot of big moviegoers here. Great, wonderful. The one thing Jim did mention, he's absolutely right about it, foster grandparents are the toughest audience in the universe. If you ever try to do a presentation for foster grandparents you're going to have a real tough time. But, did anyone see the movies that were depicted? Anyone see "Avatar"? Right, O.K. Anyone see "Hurt Locker"? All right. Now, these movies are actually important because they frame something that I'm going to talk to -- about a little bit later. Secondly, how many of you are paying attention to what's going on in Washington? Yeah. Isn't that pretty. Talk about slow-mo car wrecks. I'm telling you. I was in a car wreck 34 years ago, so I know what I'm talking about. It went pretty fast in my case. This one is happening much more slowly. You know, first of all, how many people in the room here like the temperature. Raise your hand if you're pretty happy with the temperature right now? Come on, come on, let's get involved, here, people. O.K., great. How many people really think the temperature needs to be changed, in the room? O.K. All right, now, I think whether we change the temperature or not, what I really need to have happen is the people who think the temperature is fine, and that was the majority in the room, you need to work with the people who think the temperature needs to be changed. O.K.? You need to work with them and come up with some sort of bipartisan way of addressing this issue, here. And if you can't do it, then, you know, it's just going to be majority rules. Should we do majority rules on the temperature in the room? Oh, oh, so you people are just going to ram your temperature down the throats of these poor other people. Wow. Couple of words, there. "Bipartisanship," oh my god. Oh my god. I remember when that was meaningful when I was first starting out in Washington years and years ago. And, then, this idea of ramming, right? You know. That majority rules. Ramming. O.K. The key point is not to take a position on health care reform or the jobs bill or anything going on in Washington. It's a sense to try to characterize what is going on in Washington. I mean, what does it meant that they are -- these, of course, are the normal people, right? And they are in the corridors of power, correct? They're the ones who are supposed to be addressing in honest democratic debate the issues that are important to all of us, right? But, they're not, and they get stymied on these linguistic questions and it's much more a just sort of a show taking place in Washington. I contend that it is possible that power in Washington is evaporating at the top level. That what we're seeing really is a growing irrelevance of Washington on some level in the national conversation. And while the media spends so much time focusing on Washington and focusing on what's going on in Washington and battles between the Obama administration and the Democrats and the Democrats and the Republicans and the bureaucracy and the sort of political establishment, maybe what's really going on is that Washington is becoming less relevant to what's going on. And I say that as a -- as pretty much a lifelong Democrat who has seen the erosive, corrosive effects of constantly running against Washington, that Washington is the problem or Washington is the disease or Washington is against all of us or Washington is stealing our money. I -- you know, we can debate all of those points, but I'm not really so interested in that. The question for me is who is answering the important questions about how is it we want to live. What do we want our communities to look like? What decisions do we want to make that are going to have our communities reflect our values, distribute our resources so that the maximum number of people can benefit and maintain a certain sense of order so that we could all have what we were taught and grew up believing was freedom? Is Washington doing that? If they're not, they're irrelevant. It's not that they're against us, they're just irrelevant. How many of you believe, here, that what you're doing, either in your role as a direct service provider or as a caregiver or as a person with a disability or as an advocate, is absolutely some of the most important work that can be done in American today? Now, those hands should go up, every single one. The message that I had when I was here ten years ago, and I think it's more true today, is that we have to stop thinking about disability advocacy as some sort of special case of advocacy, or disability services as some sort of special case of human services, or the kinds of care giving that we do within a family as an isolated issue of providing services to someone that needs it that is unrelated to the mission of our entire society. What is going on in the disability community and what has been going on for the entire time I've been a member, which is 34 years now, is that the question that we deal with every single day are absolutely crucial, constitutional, significant questions about how we want to live in our societies. And the more that the state governmental institutions and the -- difficulty of sometimes dealing with the bureaucracy, present company excepted, and the difficulty of dealing with federal agencies and the conflicting sort of paperwork that's required, and the very, very demoralizing sense of dealing in the health care industry when you have chronic care needs that go unmet and that you need to constantly advocate for the educational system -- when these things are so frustrating, there is the tendency to say, "Wow, what I'm doing is just no valued. What I'm doing just does not matter. I mean, nobody cares about this. I mean, I am off in this dark fringe somewhere. And that's what you have to fight. That is what is incorrect. Now, there's been some discussion about this difficult fiscal environment here in the state of Oklahoma, and I travel around a lot and it's true all over the United States. And as both of the previous speakers mentioned, there probably aren't going to be extraordinarily aggressive increases in services to the populations that you know most about in the next fiscal year. That's probably true. But does that mean that it's just a holding pattern? Does that mean that we're just purely surviving the ebbs? Does that mean that we are just purely kind of waiting it out? Do we not have important advocacy work to do in these times, as well? I'm going to tell some stories that suggest that maybe we do, but I think right off the top, people need to notice when these services are denied. And the one thing that's really, really changed in the 34 years since I've been someone with a disability is the sense -- and it's been slow, but it's still there, the tangible sense that if you don't have services for people with disability, unlike a generation ago, today people notice. People notice. People say, "Oh, wait, you didn't plan for that? You don't have a program for that? There's no place for this child to go? There's no way for you to get into the building? Not a bathroom for you?" Believe me, in the 1970s, when I first got injured as a kind of a teenage hippy, these were questions of like -- I mean, I would say, "Where am I supposed to go to the bathroom," and people would go, you know, "can't help you." You know. I was, well -- I mean, "I need to know." "Well, I can't help you." "I mean, I need to know in five minutes. You know, I need to know it in six minutes." You know. This is -- I mean, the only places that I could use that were accessible restrooms in the 1970s were emergency rooms. I would drive around for an emergency room. And it got to the point where, you know, how I'm going to an emergency room to go to the bathroom, you know, but then it's because I'm going to an emergency room to go to the bathroom because it's an emergency! It actually was true! The lack of the service made the ridiculousness of it actually, factually correct. So, in times of ebbs, everyone needs to know that if services aren't being provided, that if there is a withdrawal of the commitment, in any sense an erosion of the commitment, people have to notice. It can't be invisible. You can't allow that to be the case. And that's not to say, oh, I'm so mad that went away. It's more like, this is the society we want to live in? Is the society you want to live in? Because I think in a broad sense, what's changed in the United States over the last 34 years is a sense that people do believe -- maybe the cost questions get a little more complex -- but people do actually believe that a society that takes care of its own and has a plan for everybody is not some crazy welfare state, is not some [Russian accent] post-Stalinist program talking about World War II. You're mentioning this getting very heavy. Is not something from 1940s. [End Russian accent.] It's a real healthy society that's made a decision about how it wants to live. And that's what we aspire to have in our democracy. I love -- a couple or other language issues. If you notice on your program it says "The Alive Conference." Now, it says actually, "Keeping the Dream Alive," but when I first saw it just said, "Alive." You remember that movie, "Alive," about the people in the plane who are stranded on the mountain and they had to resort to cannibalism to -- sure, sometimes working in disability advocacy, it does feel a little bit like you're stranded in a plane that's crashed on a mountain in a glacier, and you're sort of up to your own devices, but I think, you know, if you keep the dream alive part in there, the alive part goes away and you don't have to be afraid about that. But the word that concerns me the most about this title is, yes, we want the mission of disability awareness and disability rights and providing services for people in our community who need it. We want that to continue. But we just don't want it to be a dream. We don't want it to be a dream. I mean, your jobs aren't dreams, correct? They're actual jobs, right? I mean, you have actual people that you actually serve. They would be surprised to learn that somehow they're a dream that you concocted. People need to understand -- and I'm not quibbling with the title -- that we are past the dream. We are in the sort of hard, you know, knock-down, drag-out kind of reality of making sure that these promises are delivered on in our society. How's your recovery going, by the way, everyone? Have you heard we're actually in a recovery? Everybody feeling that? Raise your hands. All right. I love how during the peak of the boom -- and you can choose whatever boom you want. You can take the sort of mortgage boom which ended in 2006 -- 2005, 2006. Or you can take the pre-Internet bubble burst boom, which was during the 90s, which was ending just about the time I arrived here at the first Governor's Conference that I attended. During that entire period of time, Clinton administration, and the whole boom period in the latter part of the aughts, here in the 21st century, disability unemployment remained 70%. Now, at the beginning of the Clinton administration I remember asking a member of Donna Shalala's staff -- in the Clinton administration -- saying, you know, "don't we need to actually create a system that will absolutely impose upon employers or create a sort of a tax or some kind of mandate that will bring people with disabilities into the marketplace? Do we need to provide actual pathways and make it clear that employers have to be serious about doing this? Which is how we dealt with employment discrimination in other realms. Don't we need to actually do this seriously?" And, you know, the Clinton people were famous for this kind of, "[Clinton voice] Well, what you need is incentivize people, John, you know. It's an incentivize program. You incentivize and the market's going to pull everybody in and it's just how it's going to work, you know." And, I mean, Clinton, of course, who never held a private sector job in his life -- Bill Clinton -- was somehow an expert on "incentivizing," and now, of course, is traveling the world with his Clinton Foundation talking about "incentivizing," when, in fact, there is no particular incentive other than people think it's a good idea to do. There's no mandate in the Clinton global initiative. There's no mandate in any of the things that Bill Clinton does now. And, of course, no market incentive during the booms reduced the unemployment rate for people with disabilities. And, of course, now we're in the middle of a recession and unemployment is still, for people with disabilities, about 70%. Now, either we need some sort of regulation. Let me call it an incentive. All right? Don't call it a regulation. Just let's create a pathway for people with disabilities to be employed within companies. And this doesn't mean that they have to take jobs away from the able bodied. It just means that part of the corporate citizenship -- and there are many corporations in your communities here in Oklahoma that actually satisfy this, but who do so voluntarily -- that part of a corporate citizenship identity within a community would be to offer employment on some level to people with disabilities. And that -- it's as simple as that. [Applause.] Well, now, we're probably not going to get there. And one of the things that's been so frustrating, anybody received any stimulus money? Raise your hand if you've received any stimulus money. Seventy-two billion dollars spent. Anybody in this room? Come on, one person. I got five dollars of stimulus money. Well, you may have received it, but you don't know about it. And, you know, the stimulus is a great idea, if the banks are failing, if the economy is grinding to a halt. Yes. Use the money, the resources at the federal level. Go into some debt. Keep people employed. But 1933 was talked about a moment ago. You know, what kinds of things happened during the Great Depression, during the 1930s, where they didn't really have much of a stimulus in terms of the kinds of dollar amounts that are talked about today. They didn't really have much of that. But they did some amazing things. I mean, some which seem kind of flaky, to have the -- you know, the writers' project where these writers were given jobs to go around and write about people doing this and that, and all that stuff is fabulous to read. It may seem a little flaky to our kind of 21st century sensibilities. I certainly like the idea because I, you know, work as a writer. But consider rural electrification. When the 1930s happened, you know, there were huge areas in the United States, many of them here in Oklahoma and Texas -- I mean, LBJ's political career rose purely on his ability to convince Sam Rayburn in the House of Representatives, the speaker of the house at that time, and then ultimately FDR, to take federal money and to do just a very simple thing. Just pay to extend the electric wires to all of the little homes that existed in rural Texas and rural Oklahoma, and other places, so that those ladies who for generations had been washing clothes by hand, and just tearing their fingernails out, and who had had no light in their homes until the evening, unless they, you now, had a kerosene lantern, paid Standard Oil for kerosene -- bring the wires to these homes. It was perceived as an absolutely ridiculous idea. It was a big idea, but it was a ridiculous idea. I mean, do you know how long it would take. I mean, for one home, it would cost more than the home to send the wire. This makes no sense. Of course, the rural electrification program of the 1930s is one of the huge legacies of how the United States, in a partnership between individuals who had a need, a far-thinking lawmaker who also was very good at his own self-interest, LBJ, and Washington, it's fair to say, that didn't get in the way, that liked the idea enough to say, all right, fine, go ahead, do it. That partnership produced this extraordinary transformation. It is not an exaggeration to say that the Democratic majority in the South, aside from its other origins in American history, was sustained by the rural electrification that transformed the way of life throughout the United States and became this enormous burst of freedom. Electrification became the equivalent of freedom, and Washington and democracy, and it was service provided by a fall-off Washington at the behest of a lawmaker whose face was friendly and every single one of those ladies -- and you can read about it in LBJ's biographies -- would vote for him no matter what he did. Absolutely no matter what he did and the constituency of lawmakers that came out of that stimulus package of the 1930s was responsible for the Civil Rights Act, was responsible for originally all the big ideas that came later. So what's missing from our stimulus here in the 2009, 2008, 2010 period. The big idea. The huge transformation. Do you know that it is possible with a tiny fraction of the stimulus money that's already been spent -- with an even tinier fraction of the money that was already handed over, just handed over to the banks -- to basically have written a law which said we will make every public facility in the United States completely accessible to every disability. That is something that could have been accomplished with pocket change. Why not? Why not? It was mentioned a few minutes ago, you know, hey, if you want to spend your stimulus money, do it in the disability realm because there's so many people who have jobs, who are related to disability service providing. I suggest make it a bigger idea. Why not use this moment in time to guaranty every disabled child in the United States access to education. Period. We'll make it absolutely a mandate. We'll figure out how much it takes to fund. We're not creating necessarily a traditional entitlement, here. But I guaranty you the numbers that have already been run on what it would take to make every public facility in the United States accessible, to give every employer a tax incentive for making their facility accessible -- it's a tiny amount of money. And, yet, it would deliver a huge statement about Americans having consensus to make the basic decision, this is how we want to live. This is where we want to live. This is our concept of freedom. We think inclusion is something that we're willing to pay for and that as a stimulus matter, it's a big idea that also excites us. It's not simply waiting around for the recovery to begin and the recession to end. It's also possible, I mean, in theory -- the amount of money, it's a bigger number than simply making places accessible in the United States -- but providing absolute federal, state and local tax reimbursement for caregivers who deliver chronic care giving to people with disabilities or people with some sort of chronic condition one way or another -- to make that a condition of your sort of identity in the tax code, to make that service have value in the eyes of the federal government -- which it isn't now. It's the one significant thing that has not changed since I became disabled 34 years ago. That is do-able within the parameters of the stimulus. Absolutely do-able. Right now, if you're a caregiver for a person with a disability, you're just, you know, doing God's work, and my, we love you. But, in fact, what you're doing is not something that's confined to the family. You're delivering a service that somehow we as a nation has decided is not valuable enough to be represented in the same way as institutional services, or hospital services or doctor services or Medicare services or Medicaid services. Why is this the case? It's not because anyone's made a decision that is invaluable. It's just that somehow we are -- we have this inability to pose the question, but isn't this what we're all supposed to be doing? Isn't this a great system that we're relying on called the families and people in these communities who are delivering these services, and we're just going to impose on them without expecting that they be compensated? It's a horrible set of values, but somehow the advocacy piece means that there's no sort of outcry. People don't understand that this is an omission. So if there is an advocacy mission for the ebb right now, it's to make sure that people understand, hey, you're missing it over here. There's an enormous number of services that are being provided and there's no compensation for it. Why is that the case? We could provide the compensation. We have the capability of providing the compensation. It's within the parameters of the stimulus. It would provide enormous numbers of jobs, both in an institutional setting, in a home-base setting and among state agencies who would be administering the reimbursement. It's a complete no-brainer. And, yet, the question hasn't even been posed. It's not even a part of the debate in the Health Care Reform Act, except in very sort of spotty places. That needs to change. Are you looking for a laboratory for discovering how communities can deliver health care more efficiently, more humanely than is done in the existing system? It's in this room. You have the answers to those kinds of questions. Washington spends millions and millions of dollars hiring consultants to tell them what is a better way, a more efficient way of delivering services here and there. You have the answers in the projects that you're involved in in this room. You need to make sure that that message gets out. You need to make sure that people understand that the inability to provide those services is a blight, is a mark, is a problem with our entire sense of community, both here in the state of Oklahoma and throughout the nation. So, let's get back to "Avatar" and "Hurt Locker." Anyone -- how many people really saw -- it did a trillion dollars worth of business. How many people actually saw "Avatar" in this room? Do you know -- you know there's a disability story in there? You aware of that? You have any -- when I was just getting out of the hospital -- I guess I'd been out of the hospital for a little while -- "Born on the Fourth of July" was the big movie with someone in a wheelchair in it. It was Tom Cruise playing a Vietnam vet and because it was an Oliver Stone movie, it really involved, you know, the question of whether he could have sex or not. Most Oliver Stone movies are really pretty much about whether the main male character can have sex. You know, this was -- it's an Oliver Stone problem. He's been working it out with all of us in all of his movies. You know. And thanks for that, Ollie. There was also this movie, "Gattaca." Did anyone see that? About like genetic technology which will allow people to basically know their medical future. It's a bit of complete fiction, but there's a guy in a wheelchair, Jude Law, possibly more handsome than Tom Cruise in a wheelchair in that movie. And, yet, they put him in this -- I mean, he was supposed to be this sort of hip guy in a wheelchair who had made it outside of the sort of genetic umbrella and he was in some sort of -- somehow free of the government system that new everybody's DNA. And they put him in this wheelchair from like a hospital lobby. I mean, excuse me. You know, it had like these high, you know, side-arms -- arm rests. It was this really rickety chair. I mean it was not a chair that anyone who used a chair other than to go from like the lobby to the car would actually use, but somehow it satisfied this pre-existing sort of notion of the director that the wheelchair is somehow a basket that contains this concept of helplessness. And I thought to myself, man, this is a movie about like the future. And it's so beyond -- I mean, it's not even reflective of the present moment. And, you know, "Born on the Fourth of July," here's this guy who, you know, is freaking out. I mean, he's in a wheelchair and all he does is just scream at everybody and he's really, really mad, and then he has this sort of epiphany, you know, "I shouldn't be so mad," you know, and then everything's fine in the movie later on. I mean, it's just not how it works. I mean, it's very Hollywood. But "Avatar" is a real breakthrough. "Avatar" is this totally different idea. And I actually have some friends who are pretty good friends with James Cameron, and one of the -- you know, here's this guy who's already made something like $300 million personally on the movie "Avatar," and he didn't get an Academy Award last night, so I'm sure he's just having a miserable day, today, right. You know? Sorry, Jim. Too bad for you. But one of the things that's infuriated him the most about "Avatar" and the response to "Avatar" is that nobody ever picked up on the disability theme in the movie. They didn't really get it. I mean, I wonder what he thought they were going to get. But it's really, really interesting because I remember part of the celebration, here, at this conference and part of the energy that's going to drive you over the next couple of days is thinking about the advocacy work of Eunice Kennedy Shriver, who sadly we lost this year, who is one of the most incredible human beings [applause] on the planet. And while I was thinking about, you know, James Cameron being so upset that nobody grasped the sort of disability theme in his movie, I was reminded of when I first met Eunice Kennedy Shriver at a VSA convention in Washington, this huge, big event, and I gave this, you know, rabble-rousing speech of one kind or another, and she knew that I was working for NBC at the time, and she came up and she says, "Why does the media always miss the story of disability? They don't want to talk about people, you know, being with everyone else. They only want to talk about single stories and cures. Single stories and cures. A story about one person and the one person's cure, or the one person's almost cure." And I said, "because the media doesn't get it. The media really isn't paying attention. The media is basically looking at the story in the same way that Hollywood is looking at the story. Their idea is Oliver Stone's idea." It's like, "O.K., it's miserable in the beginning, it gets a little weird in the middle, and then it's happy in the end." You know. Great. That sounds like -- that's an incredible movie, let's do it. You know. "Avatar" is different. "Avatar" starts with the premise that here's this guy in a wheelchair who's a military soldier who becomes injured, but he wants to remain a soldier and he still is physically capable even though he can't walk, and he signs up for this Avatar program which actually transfers his DNA and his sort of sense of self in some way into this creature, this biological creature which is created in this futuristic sort of -- I guess you'd call it maybe an agricultural station, and that creature is the same as these aliens -- this alien race, the -- I forget their names, the Bachi or something like that. The Na'vi. And the go off and they have this great story which is kind of a story about the environment and, you know, it's a fairly simplistic story, but here is the great thing. It's this idea that here is this guy -- and by the way, he's in a totally fabulous wheelchair. He's in like a wheelchair that any paraplegic would be in. You know, it's not like a big deal. And he's like transferring in and out, and he's like wearing shorts so you can see his legs, and there's no crying, and there's no sort of dwelling -- I mean, there's a couple of jokes about how -- "Can you make it," you know, "son." You know, it's some jokes of the, like, sergeants and stuff -- making jokes about whether he can actually handle it in combat, stuff like that. But no different than the kind of hazing you get in any sort of military scene. And he goes off and becomes this creature. And of course the creature can walk. Like these Na'vi can walk. And through this avatar idea, he acquires capabilities, but it's not a cure. And he doesn't want to be cured necessarily, although because James Cameron is a guy from Hollywood, he makes it so that in the end the guy goes over to the Na'vi place and leaves his paraplegic body. So, I guess you might call that a cure copout in the end. But in a sense there's no real anxiety in the movie about, here's this poor paraplegic, and he gets this avatar. In fact, the way it plays -- and the way it plays for someone like me is, you know, here's this interesting journey called -- all right, you had this one life, and then you became disabled and you acquire another life and you imbue that life with as much capability as you possibly can. You have adventures, you go here, you go there. You make it as unlimiting as you possibly can, and that life becomes your avatar. That life, that sort of embrace of, I can do this, I can move on, I can solve these problems, I can use this technology -- that becomes this idea of avatar. How many of you have been on your own sort of adventures, dreary sometimes though they are, and know that inside you there are incredible stories to tell about the battles that you fought as an advocate or as a person with a disability trying to be included. How many of you know that that story is within you? I mean, I know that, you know, whether you raise your hands or not it is absolutely the case. Now, we can't all fly like James Cameron characters. But we are all naturally embracing these avatars. We don't think of ourselves as purely physically defined by whatever it is our bodies can do. We've never thought that way. I had an interview with David Petraeus recently who, of course, is the commander of CENTCOM, was formerly the commander in Iraq and Afghanistan, and we talked a lot about the wars that are going on right now, and I asked him if he'd seen "Hurt Locker," which of course is this terrifying movie about the war in Iraq and a particular individual's addiction, it's fair to say, to detonating bombs, improvised explosive devices that, of course, have become the signature weapon of the conflicts, both in Afghanistan and Iraq. And he said, "No. I saw 'Avatar,' though." And I said, "Did you know want to see 'Hurt Locker'?" He said, "No, no, it's just, you know, I don't have time. But I saw 'Avatar' and it reminded me of my first visit to Walter Reed Hospital." Where he saw for the first time individuals whose legs were blown off in Iraq and instead of, Petraeus said, what it was like in my era in Vietnam, where soldiers kind of kept their wounds covered, wore these prostheses that looked sort of spookily like natural legs, but did nothing functional, these soldiers are standing up with their high-tech metallic legs that look like something straight out of a James Cameron movie -- and Petraeus said this -- and basically they've acquired this identity that says, "I'm moving on." That's an extraordinary change. In many ways "Avatar" doesn't lead that change, it follows it. Soldiers in Iraq, I think people in this room, people with disabilities for the last generation have been embracing this avatar idea of, I can determine my identity. I can determine whether I'm included. I can be the advocate for my own future and not be limited by whatever sort of designation the state says that determines my eligibility for services or whatever the doctor says determines my functionality. "Hurt Locker," of course, was the other big movie this year. And what's that about, again? It's about someone who defines himself narrowly. Incredibly narrowly. As an individual whose whole life boils down to keeping a bomb from blowing up, basically fighting the same battle over and over again. Yeah, it's brave. Yeah, he gets this incredible rush whenever he succeeds. And it is, shall we say, a completely realistic -- and it's an incredible movie and I think it should have won the Academy Award last night, which it did. But it's about making a decision to be just this. To fight just this battle and to fight it over and over again and to never venture beyond the narrowness of the individual sort of battle, the one sort of fight that defines you. There are probably people in this room who can say that their lives have been a choice between the "Avatar" idea and the sort of "Hurt Locker" idea. And as advocates we have to decide. Are we fighting the same battle over and over again. The same battle over and over again, or are we redefining the conditions of the battle, acquiring a role -- which people say, "That's -- that's great. That's -- I want that in my community. I want that intelligence in my community. I want that person in my community." Because if there's an important change that's taken place since I became disabled 34 years ago, it's that, you know, you go to a meeting like this and there'd be this sense of, O.K., so this is a disability meeting. How many people with disabilities are here? Well, there'd be some number. And, then, the rest would be disability. It'd be family, caregivers or people who work in state services or direct service providers. I think today, and I think especially in this room because you have so many people like Sheree, like Anne, like Jim, who have an enormous résumé, who have been in this business, who've been doing this work for ten, 20, 30 years. We're all part of the same community. The distinction between a person with a disability and the advocate for that person's services and the caregiver -- they're all equally with standing as advocates. We're all part of this robust, close knit in some cases -- although I think the isolating sense of working in the rural communities where you're unconnected, which makes a meeting like this really, really important -- but it is still a tight-knit community of advocates who understand what the important problems are today in health care reform, in democracy, in defining our communities. And that's what's great about coming to a meeting like this. This is a real community. This is not just some advocates and some unfortunate folks who two generations ago would have exclusively been institutionalized, and that was the end of that. And one of the stories in my book is about my uncle who was a PKU child, untreated PKU child who was institutionalized from a very early age, because my grandparents were told that him being in the same family as my mother and my aunt would make them less intelligent, so, therefore, he should be removed from the house, to which they paid an enormous cost, my grandmother, my grandfather, my mother, my aunt. The idea that this was -- not that it was unnatural to institutionalize someone, but that this should be the only option. That somehow a family could under no circumstances be nurtured or enriched by the presence of someone with a disability in that family. But that was not a possibility when inside each one of them that was the natural position. That was the intuitive position. That was what made the most sense. You know, we've reached a point where we don't even think in those terms anymore. So, a couple of stories about how this sort of "Avatar" versus "Hurt Locker" notion has figure in my life. I mean, the -- there's a story in my book about how when I was in Chicago years ago I would roll up a hill to work and then down the hill when I would go home. And I was rolling up this hill on Michigan Ave. in Chicago, people would constantly, you know, say, [Chicago accent] "Hey, buddy, you need a push, there?" "Can I push ya?" "Hey, I'll push ya." And, of course, me being a child of the 70s and someone who I think viewed my own disability as this challenge -- O.K., are you independent or are you dependent. Ugh, dependent. We wouldn't want to be dependent, now, would we. And people who are dependent get pushed, but people who are independent don't get pushed. But people who ask to get pushed, what are they? Well, from my perspective, people who asked to get pushed were really pissed off people, who were like, "Stop asking me that." You know? "No. Don't ask me that. Why are you asking me that?" And I thought somehow if I maybe went a little faster they would say, "Oh, he's going so fast he doesn't need a push, so I won't ask him if he needs a push." But, of course, it didn't affect anything. And if I went too slow, you know, the thought was, "Are you struggling there, sonny?" You know? And, of course, I didn't want to go to slow. But there was nothing I could do to stop people from saying, "Hey, pal, do you need a push?" And it would get me so angry and upset and, you know -- why can't people see that I'm, you know -- I'm doing just fine. Of course, people probably could see that I was doing just fine, but I couldn't see that all this was about was some sort of verdict on whether I was dependent -- God forbid -- or independent. Some kind of, you know, gold medal in the Olympics called "disability independence." When I would go home from work, I'd go down this very same hill and I loved going down the hill. It was fun, right? But people would say, "You're going to get a speeding ticket, there, buddy." You know. This is happened to you, I see. Yes. You know, and I would say -- I mean, when the first person did it, I would go, "Oh, sure." When the 10,000th person did it, I was thinking to myself, "That person thinks they're so clever. What is it? Is it in the DNA where people say, 'You're going to get a speeding ticket, there, buddy'? How come it's not expected that I can go fast? Why do I have to go down the hill at the same speed that I go up the hill or it will be noticed as some kind of -- something?" I didn't want to be noticed. I just wanted to be John. Regular, anonymous guy in a wheelchair in the crowd. Now, why would anyone want that? I mean, when, you know, the so-called normal people wake up in the morning, they go, you know, "Well, I hope I'm in the crowd all day today, nobody ever notices me or speaks to me at all, because that would just be horrible if that ever happened." But somehow my sort of original notion of how to deal with my disability was this. It's kind of like "The Hurt Locker," sort of like I was looking for this bomb called the "You're going to get a speeding ticket" -- "need a push?" I was looking for it. Every day I was looking for it. I was not missing it. If somebody, for instance, like didn't say, for some reason, and I can't imagine they ever did, that, you know, you need a speeding ticket -- if I didn't hear that some day, I would figure, oh, wow, there must have been a tsunami that killed everyone on planet Earth, because I'm the only survivor. And, of course, that was not the case. So that's the "Hurt Locker" notion. So when did that change? And how did that change? Well, I -- you know, I had a whole big, convoluted, kind of over-intellectualized sense in my book about what this was all about and, you know, why do people notice this and why didn't they, and I don't have a good answer for it, but part of it was possibly that they wanted in. They were looking for a door in to my experience, and I wasn't necessarily giving them a door in. But I also was looking for some sort of affirmation of my experience. I didn't want to be what they thought I was, but in the course of doing the kind of "Hurt Locker" thing of digging up the IED and detonating it and going on to the next bomb, I was only defining myself in that narrow, pure, little conflict. So, how did this change? Well, you know, as I told you I have a pair of 11s, pair of eights and an ace high, and when my 11-year-olds were six I was getting a new wheelchair and they were gradually getting to the edge where they kind of understood what this whole wheelchair bit was all about. And I remember one of my daughters, Zoë, came to me after she went to preschool, and she came home for a week and she over to me and she sat down. You know, I said, "How's school been going, Zoë?" She says, "Great, daddy." I said, "What's wrong, honey?" "Well, I just, you know -- there's lot's of kids and lots of parents at the school." I said, "Yep. Yep, yep. Are you making lots of friends?" "Oh, yeah. Yeah." And I said, "Well, what's on your mind, Zoë?" "Well," -- and, again, this wasn't something that she was, like, sad about. This wasn't something that was emotional. This was something that she had decided that I needed to know. And so she looked at me straight in the eye and she goes, "Dad, you know, out there in the world, there just aren't a lot of people in wheelchairs. Have you noticed?" You know. And I said, "Yeah, I have noticed. I absolutely have noticed. I mean, you happen to have a daddy who's in a wheelchair, but, you know, there's a lot of people in wheelchairs, but, you know, there's a lot more people not in wheelchairs." And she said, "O.K. I just wanted to make sure you knew that, dad." And, of course, her point was, you know, she's resolving this huge issue in her own life. Her friends' parents can walk and my eight-year-old daughter -- it's so funny, because a lot of times I'll go to pick up kids at school and, you know, some of the kids in my eight-year-old's class, Regan's class, will say, "Oh, you're grandpa's picking you up." You know, thanks a lot, you know. That's great, you know. Really good. And Regan will go, "No, no, no, no, no. He's not my grandpa. You just think that 'cause he's in a wheelchair." You know. And, here's my eight-year-old, the expert on all this. So, here are these kids trying to resolve this sort of reality of what's going on in their life versus everybody else's, but even my daughter had detected somehow. "You know, dad, you need to know that not everybody's in a wheelchair." You know. They're not that many people out there in a wheelchair. And, so, with that as a kind of a preamble, when they were six years old, many years later I was getting a new wheelchair and I was looking at the catalogue for stuff to get and I was just basically checking some things off with my rehab consultant who was going to order a wheelchair and I was going to, you know, fill out the complicated forms of getting reimbursement and all that sort of thing, and the wheelchair would arrive. And, of course, I wanted the exact same wheelchair that I had before, partly because the physical connection that you have with the chair is so intimate. Getting a new chair is sometimes a little -- mmph. Ugh, can't stand it. But, there is also new technology and new things that you would want to get on a chair that, you know, maybe you should take a look at. But I wasn't really looking at that. I wanted the same chair. It's got to be black. Da da da da da. Well, my daughters, Olivia and Zoë, noticed that there are these, like, wheels you can get in the front that have little generators in them. They have LEDs in there, and they were at the time, you know, buying these, like, sneakers. Have you seen these sneaker with the LEDs that you can get? And I was working for NBC at the time and working for "Dateline," you know, a big [mock swagger voice] NBC correspondent, you know. "O.K., I'm in a wheelchair but I'm a big NBC correspondent, right?" [Regular voice.] And the girls said to me, "Dad, you should get these wheels with these completely awesome, like, sparkles. I mean, you twirl them. I've seen them on scooters. It's like, completely awesome." And I said, "Well, girls. I'm a, you know, [mock important voice] NBC correspondent and I can't be rolling around with -- huh, huh, huh -- sparkly wheels. Huh, huh, huh." [Regular voice.] And I -- you know, I could not have looked more ridiculous to them -- as if I had said that I was Bozo the Clown. But I said this with an absolute straight face, you know, just trying to, like, move the conversation on. And the both looked at me like, you know, "We did not know that. So you can't wear sparkly wheels?" Looking at me as though I had a new disability. "So, like, you can't walk, O.K. You have trouble finding a bathroom. We've experienced that, dad. And you can't wear sparkly wheels. Whoa. It's a real uphill battle for you, daddy." And just in their faces I could see what they were concluding, and I went, "Whoa, whoa, whoa -- wait -- wait -- wait a minute, here. I mean, I can have sparkly wheels. It's not against the law for me to have sparkly wheels." "Well, then, get the sparkly wheels, dad." "All right, I'll get the sparkly wheels." And so I -- you know, you probably can't see because this isn't really -- I mean, I've got the sparkly wheels here on the chair. [Applause.] All right, so, wow. You know, some of you may have heard this story. I mean, wow. A guy obeys the advice of his six-year-old. What kind of a story is that, for like an important government conference on disability issues, O.K.? Well, the reason the story's important is that the next time I went to the airport, for instance, or was rolling on a hill, instead of when I was rolling to the airport -- instead of like people leaping out of the way, or people sort of looking as though, "you're kind of going way to fast, there, pal," or saying I needed to have speeding ticket or saying that, you know, maybe I needed a push, it was the same and the kids were the first ones to go, "Awesome wheels, dude. Awesome wheels." And all of a sudden this idea of the chair as delivering this very specific message of who the guy is and what his problem is, and who he is and whether he's independent, or dependent or not, was blown away. Suddenly this idea of the chair with these lights that were awesome -- made the chair awesome, which made me and the chair awesome -- it was "Avatar." It was the whole "Avatar" thing. Suddenly the lights created this narrative, this story that I sort of jumped into, and it wasn't as though I left the wheelchair or was suddenly somehow able to walk, but I had acquired this other identity, that the identity that I thought was absolutely permanent, of just independent guy in a wheelchair versus society who thinks he's dependent, could be blown away by something as simple as some lights. And occasionally there were the adults who would come up to me -- and this is my favorite part -- you know, they would come up and they'd go, [mock square serious voice] "Oh, those lights are great. I guess they're for safety, right?" [Regular voice.] I mean, I just -- I love stuff like that. I just like -- "Yeah. Safety. Yeah." I mean, can you imagine? So I can see my own wheels in the dark, or if I'm looking at my wheels in the dark, I would just roll straight into the road. And if all I have on my chair is those wheels and they're down by the road and I'm trying to be safe from like cars running over me? No, no, no, this would not be a really good strategy. But somehow those rational thoughts are blown away by, [mock serious voice] "Well, the only reason you would ever put lights on your chair would be for safety, right?" [Regular voice.] Like the people who think that if I'm on ice, I'm going to fall over in a wheelchair. Whereas people who are walking around on these, like, spindly little legs, they're somehow find. But I roll into the ice, people go, "Whoa, dude, just be careful on the ice." It's like, "Hey, man, you be careful. [Laughter.] I mean, you be careful. I'm going to be fine. I mean, I'm already sitting down, do you understand what I'm saying? [Laughter.] If you tried to sit down you would break your tailbone." [Laughter.] And the go, "Oh, right, sure. But, be careful." You know. So, to conclude -- and we've got a little bit of time, right? We've got some time. Do people want to do some question and answer at all, to get things going? Raise your hands if you want to. I'm perfectly happy to entertain it, but we don't have to if we don't want to. The sort of final sort of point on language that I want to make is, my son, Zachary, who's eight years old -- he's now one of two boys in the family -- asked me the other day, and it was -- sort of took this issue of language and really, really brought it home. Because I think, you know, we've had a lot of anxieties in both the civil rights movement and in the sort of development of the inclusion dialogue, the inclusion conversation in the United States as to what words we need to use and what words we need to put away, and sometimes that look at language and sometimes that look at language has kind of gotten us stuck on the words and we haven't been able to get beyond the words. But my son said to me, just really within the last couple of months -- he said, "Dad, why do people say 'lame' all the time?" And I said, "What are you talking about?" And he said, "Well, everybody says when something is like bad or when it's not working or when somebody's a loser that they're lame." And I said, "Well, I -- you know, people just use that a lot." And my son, my eight-year-old says, "Well, do you know what it means?" And I said, "Yeah, I do. It means that you can't walk." He said, "Well, I mean, if you can't walk, does that mean you're a loser?" And I said, "Well, I don't think that people who are saying 'lame' actually mean that, but they don't understand where the word comes from and they certainly don't think of me when they're using that word." And, so, Zachary looked at me and said, "So, you're invisible?" And I almost said, "No, no, no, no, Zachary," but instead I said, "actually, yes." In a sense, focusing on language and focusing on words that we want to use to better inform ourselves about what our communities ought to be, who should be included, what constitutes being a citizen or being in a community -- it's all about who's visible and who's invisible. The mainstream and the people, say, on the Fox News channel would love to have a discussion about how, you know, [mock serious voice] "People in Norman, Oklahoma, ban use of word 'lame.'" [Regular voice.] You know. And then they'd have like a debate about, like, "Why can't you use the word 'lame'? You know, what's that? I'm using 'lame.' It's no big deal. Everybody uses it. You know." [Mock serious voice.] "Well, because it's offensive to people who can't walk." [Mock peevish voice] "Oh, come one. Get over it." [Regular voice; laughter from audience.] You know. "We're in this politically correct world. It's just pinned us down and we can't do anything anymore." You know, well, no. And as thought there's like a department of political correctness, you know, in the Pentagon or something, out enforcing this sort of thing. If people who enforce politically correct language had any power at all, you know, it might be a slightly different language that we're living in, or language that we speak. But the question really comes down to, it's not whether you choose to use a word or not that should be important. It's whether you choose to believe that the people who might be offended by that word are invisible to you. You have decided to make them invisible. If you have chose to do that, then over time that will be the message, from your use of those words. Advocacy is about keeping us from being invisible. Keeping us from being invisible. The growth of curb cuts and ramps in cities around the United States, you know, if you want to talk about "incentivized" programs for access -- have gotten to the point now where if there is a street corner without a ramp, it is more noticeable than a street corner with a ramp. And it is noticeable for reasons that are disincentives to the businesses on that block. It suggests that there's something wrong with this street. It suggests that it's not as built up. It suggests that the city somehow doesn't really care about this block. It maybe suggests that there's something sort of outmoded and kind of old fashioned, archaic about this particular street, whereas this street across the street with the nice curb cuts and everything and the wide doors is modern. We want to live in a modern world. We don't want to live in that kind of scary sort of archaic place. In the exact same way, there was a time in America where whites only and blacks only water fountains were invisible. They were just a part of the way things worked. Now, they weren't invisible to everybody, but they were invisible enough that they didn't particularly attract attention. They were just a part of some decision that someone had made that blacks and whites weren't to drink out of the same spigots. If you were -- and this is my great argument with preservationists, because it's not so much the case anymore, but ten years ago if you wanted to argue for the accessibility of a public building, often the architect and the developer would say to you, "Well, this is a landmark building, and if we put a ramp on this building, it would somehow destroy its architectural integrity" of some sort." I would say, "Well, really -- I mean, stairs are great. I mean, gosh, I love them. Love elevators, too, but how is it that putting a ramp on this building or putting a ramp that's like so far in the back that, you know, you'd need to be a detective or, you know, have a Geiger counter to actually find it -- how does that solve the issue of access without delivering a message that we actually don't want people in wheelchairs in this building." And, in fact, is the landmark you're trying to preserve, the history you're trying to preserve maybe this history of when we didn't have people in wheelchairs around? That's what we're trying to preserve, here, right? So a building that doesn't have a ramp is preserved because somehow we value this history of exclusion of people with disabilities, when they were invisible? And they still are kind of invisible now, so why would we want to deface this building with a ramp? Imagine if you made that argument with whites only and blacks only water fountains. "Well, we can't move these. We can't change these. I mean, these are landmarked." "What do you mean landmark?" "Well, we're trying to preserve the sort of architectural history of the time when blacks and whites weren't permitted to drink out of the same sinks." Why would we want to preserve that? The question is that, first of all, civil rights has gone from being completely an invisible struggle in America to being a huge sort of sociological battle, to begin absolutely a part of the definition of our society, so that if you even attempt to do such a thing, the visibility of how wrong that looks is so stark that you would never consider even doing it. It is that mark that we need to hit in terms of disability rights. People need to understand that we're not trying to preserve a history where people with disabilities were excluded. That's never something we would ever want to do. We want to, in fact, create a history where they are included, to create communities that offer those services, that create a language and an environment where if someone says, "that's lame," they know what they're saying. They know who they're saying it to, and they may choose to say it, but they hear the visibility of those people. Keeping the dream alive means keeping us all visible and making sure that during the ebbs the withholding of services, the absence of services represents a visible decision on the part of people who decided that this was expendable, or this we can do without, because on the upturn, it's going to inflame and energize your argument to make sure that people are included next time. Have a great conference. It's been terrific being with you.