Braille Monitor                          January 2019

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Leading with Conviction: Making Equality for People with Disabilities a Priority for the United States of America

by Neil Romano

Neil RomanoFrom the Editor: Saturday afternoon President Riccobono opened the session, and our first presenter was the honorable Neil Romano. Here is how the President introduced him:

"Our first speaker this afternoon is chair of the National Council on Disability, an independent, non-partisan federal agency that advises the president, Congress, and other federal agencies on disability policy. He was appointed to NCD [National Council on Disability] by Congress in 2015, and he's now in his second term. He has dedicated his career to the marketing of ideas and messages to help save lives and promote public policy, and he's been successful in a variety of endeavors. You may know him from his previous work. In 2007 he was nominated by President George W. Bush to be the assistant secretary of labor for disability policy and was unanimously confirmed by the US Senate. In that position he led disability employment policy initiatives across the federal agencies. And on February 26, 2018, the president of the United States appointed him the chair of NCD. He didn't waste any time on making it clear what his priorities would be. He has many priorities, but there's one that he's pursuing more doggedly than any of the others, and it is the complete elimination of 14(c) of the Fair Labor Standards Act. [applause] Here to address us in his hometown of Orlando is Neil Romano:"

Thank you very much, President Riccobono. I have to tell you it's rare that I'm in a room that is so alive, holy smokes. [cheers] I was saying to Congressman Soto before I got up here: I just keep waiting for someone to say, "The great state of Tennessee gives fifteen votes to president . . ." This is an amazing convention! Congratulations to the planning committee and all the folks who do this. What this means when a person comes to something like this, is that there's great leadership and great cause and great purpose that we are looking for here.

Obviously I'm delighted to be here to address the National Federation of the Blind for a lot of reasons, but I'd also like to take an opportunity to say thank you. Over the last so many years, every time it seems that I'm up for some appointment or other in the federal government—you know, no one ever knows how you get these things, it's some kind of magic, all of a sudden your name appears on a list. And then all of a sudden on that list you either rise or fall. You get really embarrassed. It shows up in the newspaper, and no one's ever heard of you. No one understands the alchemy or the magic of how it all happens, but I have to tell you, over the last number of years the NFB has consistently supported me in my efforts. I want to thank you for that, [applause] and I have to say that I am going to do everything that I can to make you happy and proud that you supported me. [applause, cheers] Oddly, it's not just because I want to make you guys happy. It's because I know that with the NFB, if I'm doing something that makes you happy, I am doing something that is good for people with disabilities and Americans. [applause] So thank you.

President Riccobono's responsibility is to give you an introduction of me; he has to say something about me. I don't come with the cache of a congressman. You know who that is. You know what he does. You know how hard he worked to get there. But who is this guy? He has to give you some background on me because the planning committee doesn't want you to think they just picked me up in the hallway to fill fifteen minutes. So you get this image of a person, and they tell you things like I was the director of communications for President Reagan, I served as assistant secretary of labor and on and on, and you heard all of that. But I have to tell you, hearing what I did doesn't necessarily communicate who I am, and more importantly, why I believe what I believe, and why you can understand that I will be consistent and hard-working for you as the chairman of NCD.

So I'm now going to tell you a little about me, as briefly as I can.

You are hearing from a person who has suffered—I wouldn't say suffered—but who has serious dyslexia and spent much of his life ashamed of his limited ability to read and write and truly understands the crushing weight of low expectations. I'm going to stop and tell you something funny—oh my God, he just killed his dramatic line. Well I've got a couple more; don't worry about it. I've got a couple of real nasty barbs too—I come from a working-class Italian-American family back in Brooklyn. [cheers] Let's hear it Brooklyn, let's hear it New York, New Jersey—thank you guys.

When I was selected to be the assistant secretary of labor for the United states, it was shocking to me. I was in a store buying CDs, and I got a call on my cell phone. The person on the other side of the call said the president would like to talk to you, and I said, “Yes, of course I’ll speak to the president of the United States.” I think the woman behind me thought it was just the most amazing pickup line I was making up.

He said, "Neil, you know you've been complaining and moaning and going around the country talking about this 14(c) thing that you hate and all these other things. How'd you like to put your money where your mouth is and be my assistant secretary?"

I said, "Well, Mr. President, when you put it that way, what can I say? Of course."

So what did I do? I hung up, and what would any good Italian kid from Brooklyn do? I picked up the phone and called my mom. I said, "Mom, I just got off the phone with the president, and he's asked me to be the assistant secretary of labor." My God, we're printers, my family. My mother was extraordinarily quiet, quiet to the point where I thought she'd fainted. I thought, oh my mother in Brooklyn is laying on the floor; this is awful. I finally said, "Mom, are you okay?"

She said, "Yeah, I'm fine. But does the president know you can't spell?" [laughter]

Sometimes low expectations are just inherent, and they're not always mean. It's just what people believe. You also don't know that I was raised with a cousin with Down syndrome my entire life. She taught me that her hopes, her dreams, her desires were not the slightest bit different from mine. [cheers, applause] And she had within herself the most pronounced idea of freedom I have ever known. Which makes it interesting when I hear people say to me, "Well, they don't really know what they want. They don't really want to make money."

That's not their expectations. I guess you need to know that my father's best friend his entire life until the day he died was a blind evangelist who some of you may have heard of. He was from here in Florida, and his name was Ralph Montanus. We never marveled at the fact of what he could do as a blind man. We marveled at the fact that a man who's dedicated to other people could really affect the lives of millions of people worldwide. My understanding of blind people is based on an executive who worked very, very hard and achieved. I have a brother who recently passed who was a Vietnam veteran who was a quadriplegic from the war. And I got to see what love means in a family that makes people in bad situations do better. But I also saw the obstacles caused by bureaucracy that often make the care of loved ones a full-time and lonely job.

Finally, my resumé doesn't give you any indication at all that standing before you is an older man who grapples with the daily effects of leukemia and now faces the unexpected physical and often emotional changes of knowing the name of what will take him.

I tell you all of this because you need to know that as your chairman—your chairman—of NCD, I'm not someone who's learned my lessons from things I've read. I'm not someone who's taken the time to learn things from books, and I have no constituency besides you. I have no constituency besides us! [applause]

Let me talk a little bit about—you know, I'm running out of time already, which is shocking. They're probably saying, "When the heck is he getting to the NCD stuff?" Well, eventually. But John [Paré] already took away my 14(c) piece; what's next? Anyway, at NCD we have a series of priorities, and I'm going to run through them. We have many of them, but I'm just going to highlight four that mean a great deal to us. One of them is—it's funny, I have an intro what 14(c) is, but I don't think I need it in this room, do I? Can you imagine, for one moment, a law which allows Americans with disabilities to be paid less than minimum wage? Can anyone imagine any other group in America that would allow that and that there would not be civil war? Can you imagine if one day there was a law that said that women under the height of 5' 1" could not work in America, or if they hadn't achieved a certain weight couldn't do something? It would be a war, and rightfully so, because it's unfair. But we have a codification, a law, that indeed says it is so, there are people who cannot do productive work. I do not accept that, and neither do you. [applause]

NCD will be redoubling our efforts to eliminate this practice by answering the often-deceptive claims and scare tactics of the lobbyists who slither their way through our halls of Congress offering their dogma of gloom. This year NCD will visit the six states and numerous programs that have voluntarily eliminated their 14(c) certificates and have not experienced the dire consequences predicted by those merchants of hopelessness. NCD will also continue its much, much, much appreciated partnership with this organization as we continue to do things like congressional briefings and strategy meetings, which are more often than not led by some of the people in this room, including my good friend over here, John Paré. [applause]

Another priority that NCD is going to be looking at has to do with what we call cradle-to-grave bioethic issues. These are issues that generally don't get talked about. These are issues that people are sometimes quite afraid of. These are issues that as we talk about healthcare in America for people with disabilities don't often get raised, but they have the most significant impact emotionally and ethically on some of those decisions. We're going to ask the question is it acceptable to use genetic testing as a tool to eliminate entire categories of people with genetic differences and have the audacity to call that a cure? [applause] Do we agree with the medical model that sometimes considers some lives less worthy of life because of the potential of a disability? Is it possible that this very mindset is one of the reasons why people still have negative attitudes about people with disabilities in America?

You know, I have to say something, and I'm just going to say it. I have literally heard people say, "Can you believe that that person had that child, even though they knew he would be born blind?" I'm sure some of you have heard it. And is there anything more terrifying than someone making a statement like that? Should we be having a debate in 2018 about whether people with disabilities should be allowed organ transplants? And is it acceptable under any condition for the words "guardianship" and "assisted suicide" to be spoken in the sentence—ever?

We move to transportation—and I'm moving along quickly—but frankly this is a real simple one. NCD has been one of the leaders in the field of autonomous vehicles because we understand a simple thing: if you can't get to work, you can't work. [applause] I mean, there isn't a lot more that you can say about that. If you can't get around, it makes your experience and your ability to find happiness and financial support and security almost impossible. So we're working with the United States Department of Transportation on almost a daily basis to make sure that your views and the views of people with disabilities across this country are represented in the private meetings and in the conference rooms where things like autonomous vehicles are being discussed.

And finally, I'm just going to touch very briefly on parental rights. NCD recently issued a report on the abuse of parental rights for people with disabilities. I asked my team to put together a brief summary that tells me what the problems are, even though I worked on the survey, and what some of our solutions were. You know what: after they sent me this nice forty-page paper, I decided to sum it up this way: no parent should ever have a child taken away from them simply because they have a disability. Period. [applause, cheers] Disability is not a crime. Period. [applause] And I'll be darned if I am going to accept some judge somewhere who makes a decision that they have a better idea what to do with our children than the love of a parent. [applause]

In closing, I just want to say that these are fundamentals to us as Americans. You know that we have the Constitution, but the Declaration of Independence says that we are "endowed by the Creator with certain unalienable rights; that among these are life, liberty, and the pursuit of happiness." Everything we talked about today has to do with that statement, and it's our responsibility—everyone in this audience, everyone at NCD, my friends in Congress, all of us—to remember daily that it's our responsibility as citizens to pay forward the promise of liberty and to make America more inclusive and more equal for every human being. Thank you. [applause]

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