Announcer [over music]: Welcome to the Nation's Blind Podcast, presented by the National Federation of the Blind, the transformative membership and advocacy organization of blind Americans. Live the life you want.
Melissa Riccobono: Hello, and welcome to the Nation's Blind Podcast. I'm Melissa Riccobono, and I have two lovely co-hosts here with me today.
Anil Lewis: Lucky you. Lucky you.
Melissa Riccobono: I am very lucky. My first co-host is the one that's talking. And who are you, sir?
Anil Lewis: This is Anil Lewis. Welcome to the Nation's Blind Podcast.
Melissa Riccobono: Yeah. Absolutely. And who else do we have here, Anil? Or maybe he can just say his name?
Anil Lewis: My buddy, Christopher the Danielsen. Welcome, Chris Danielsen.
Chris Danielsen: Yes. Chris Danielsen, the usually silent partner in the podcast, the podcast producer, but sometime co-host and general cook and bottle washer and all that kind of stuff.
Anil Lewis: Chief cook and bottle washer.
Chris Danielsen: Yeah. Oh, you're very kind.
Melissa Riccobono: Chris keeps us on our toes. He's the one that's like in the background that you don't hear, but he goes into our ears and it's like, "Okay, guys, it's time to wrap it up," which of course we need, because Anil and I love to talk, you know, anyway.
Anil Lewis: Oh, absolutely. What are we talking about today?
Melissa Riccobono: What are we talking about today? Well, first off how are you guys? Are you staying warm in this arctic blast that is gripping the US, all of the US?
Anil Lewis: I'm trying to.
Chris Danielsen: I am doing my best. I have on my sweater that I bought in Ireland. This is the kind of sweater that Irish fishermen wear when they go out into the north Atlantic and-
Anil Lewis: Oh, nice.
Chris Danielsen: So I'm pretty warm today. I'm pretty pleased about that, because it is very icy. Yeah.
Anil Lewis: You're much more adventurous than I am. My solution is stay in the house and turn the thermostat up to 72 degrees. That's how I deal with it. Yeah.
Melissa Riccobono: All right. Well, enough about the weather. Why don't we talk about what we're going to talk about, which is the thing that is coming up, the big thing, the next big thing that is coming up for the National Federation of the Blind, and that is our Washington Seminar. Wow.
Anil Lewis: The march on Washington. Yeah.
Melissa Riccobono: The march on Washington. January 29th is the gathering in, and hopefully... We're hoping that a lot of you are going to be there in the Capitol Holiday Inn, 550 C Street SW, whatever they're calling it now.
Chris Danielsen: Yeah. They've added to the name now. I can't even remember what-
Melissa Riccobono: Oh, have they?
Chris Danielsen: Yeah.
Melissa Riccobono: Oh. Uh-huh.
Anil Lewis: But it's still 550 C Street. That's always the same.
Melissa Riccobono: Thank goodness. Thank goodness. But if you can't be with us in person you are able to tune in on YouTube, I think on Zoom, the same way that you tune in for our presidential releases, so I am really glad about that, because I do know that there are people that for whatever reason cannot come to Washington Seminar.
But we're here to talk a little bit about Washington Seminar and to kind of let people who have not been there before know what to expect, either if you're going this year or maybe you'll get excited and you'll want to join us next year. So how about the two of you? What was your first Washington Seminar like? Do you remember about any issues that we were working on, or do you remember any special moments for the two of you?
Anil Lewis: I like the way you framed it, it's the next big thing, because for me the most pivotal events within the organization, definitely national convention, but Washington Seminar is that next big thing. It's the one that really... The convention showed the camaraderie and the family and the fellowship and the power, but the Washington Seminar really showed that advocacy bit, our reputation and powers in that space.
It really confirmed it to me, and I really recognize also... Let's see, my first one was probably back in '99, and I remember then we were working on the Social Security issue. We're still working on Social Security, only to say that's the tenacity of the organization in the many instances in legislation we worked on.
We may not necessarily get it passed straight away, but we continue to work on that, and in the interim we still make significant progress in the issue itself even before the legislation passes.
Chris Danielsen: That is absolutely true. You know that has been a perennial issue. My first Washington Seminar was in 1992, and I remember... It wasn't that year, but I definitely remember that I think in 1995 we were working on the Social Security issue, and there's a particular reason I remember it, and I want to talk about that.
So for those who don't know, Washington Seminar is really our gathering where federationists from across the country come to Washington and meet with their members of Congress. We always try to meet with the members of Congress if we can, but sometimes they're busy, or they have a vote, or whatever, and sometimes you just wind up meeting with a staff member.
And if you're relatively new to Washington Seminar, that can be a little disappointing, if you don't get to actually meet your member of Congress. But a lot of times their staff members that work with them are the subject matter experts in a particular area. I remember meeting with this one staff member for Congressman Bob Ingliss of South Carolina on the Social Security issue. We met with the Congressman for a few minutes, and at that time we were trying to do something similar to what we're trying to do now with the Blind Persons Return to Work Act.
We were still trying to get rid of that earnings cliff, and the Congressman kept saying to us, "No, I don't think I can support that. It's a budget buster. The Social Security system is already strained, and if we were to not means test the assistance for people with disabilities then we'd be doing a disservice to the rest of the country. And that's my answer, and I ve got to go to a vote, so bye,' and he ran out the door.
And we kind of sat there with his staff member, and his staff member actually said to us, "You know what? I actually think you're right about this and I will talk to him about it." And I said, "Okay. That's great. We appreciate that. You do what you can. Thanks for meeting with us," all this kind of stuff, and we went on our way.
And, interestingly enough though, three weeks later we got a letter. Those of us who were in that particular group, in that particular delegation, got a letter from the Congressman saying, "After reviewing your position, I have decided to support removing the earnings limits." So there you go.
Anil Lewis: Nice. Very nice.
Melissa Riccobono: Yeah. That's a great story.
Anil Lewis: I think a lot of our members recognize the power and the influence that we have just basically in those discussions, because we go into that room not being legislators, but we have a lived experience that speaks to untapped expertise, right? Because if we were counting on them to really navigate through the policies that impact blind individuals, woe be us with the resulting policies.
So I think that it's important to recognize that when we're in those conversations we're giving them the information that they really need in order to make really informed decisions.
Melissa Riccobono: Yeah. It helps them know that we're a population that... Especially because we are from their own state, I mean that's the beauty of it. It's not just somebody from the NFB, John Pare or Anil Lewis or anybody else, coming into Washington, although they certainly do help, but it's members from as many affiliates as we can get, and often we get all the affiliates to go and to talk to the people in the halls of power.
That was really... During my first Washington Seminar that was really the thing that stuck with me, that, oh my gosh, you hear about this in school, you hear that you can do this, and here I am, this college student from Wisconsin, I'm actually in DC, I'm actually in the place where the laws happen, and I'm actually talking to either staffers of or the actual Congress people themselves, and telling them my story, and putting a face to this, and really advocating for something I feel is right and fair and could really make a difference in the world.
That is extremely powerful, even if the things that we try for don't get passed. You know, you're talking about Social Security. I love what we've done with that, because not only have we continued to put the law in for a number of years, we also took a break when that seemed like it was a necessary thing to do. Not that we didn't care about it, but it just wasn't a good political time to try to make changes. And then when we figured out that this was a good time again, we put it in but we made it different. We go with the times.
It's not some acts that I can think about that just keep putting in the same bill over and over and over. Even though there have been people who have said many times we don't like this bill, these are the problems with this bill, people just keep putting the very same thing in. Some people will say that's because they really believe in it, and this and that. I get that. At the same time I think you do also need to understand what negativity might actually be true and how you can create a different bill or a different spin on something, and I think we in the National Federation of the Blind do that very well.
Anil Lewis: People should understand that the process is evolutionary. I mean the whole climate doesn't stay static. We were working on, here again, the Social Security legislation, but what we needed Social Security to do, the type of reform we needed them to engage in, is different today, and we also have more data to support what we're trying to get done today.
So although the fundamental purpose is to reform Social Security so that it really does become the work incentive program that it professes to be, our tactics and the climate, all of that evolves, so then our language and our strategies also need to evolve.
Chris Danielsen: Yeah. I mean to that point about Social Security in particular, and not to just focus on that issue, because it is not our only this issue this year, I can remember... Actually I think the year I was talking about, which I think was '95, it was our only issue that year. It was very unusual, because it was the only issue that we wanted to talk to members of Congress about.
But at that time we were saying just remove the earnings limit. Don't have an earnings limit for blind people just like you don't have an earnings limit for seniors, and that was a no go. We tried it several times and it was just a no go. We made all kinds of arguments for it, but it just wasn't doable.
So because the data has changed and because of that, what we're now asking for is as you start to work for every... I think the way we're doing it is for every two dollars you earn your Social Security benefit is reduced by one dollar.
Anil Lewis: Yeah. Definitely following the same model that the Social Security supplemental insurance follows, which is not as problematic as SSDI.
Chris Danielsen: Right. Right.
Anil Lewis: It's a proven way of processing. It's interesting that some of the stuff that's so common sense is so difficult to direct.
Chris Danielsen: Right. So what we're saying now is rather than eliminate the earnings limit we talk about eliminate the earnings cliff. In other words, don't make it so that a blind person who has SSDI just drops off into space and suddenly has no support from SSDI. Instead, more like they're walking down a gradual slope until they don't need their benefits anymore. That was an evolution that we made.
Sometimes it takes longer than others. The Pedestrian Safety Enhancement Act took a long time, took us a good eight years to get something that everybody was happy with, but then again we were told at the beginning of that process that we would never get something like that passed. This is the legislation that requires hybrid and electric vehicles to make a safe level of sound.
So never say never is what we've learned in this organization. Patience and persistence really do pay off.
Melissa Riccobono: Absolutely. So I'd love to talk to the two of you about the issues briefly, the issues that we have this year, what people who are new to Washington Seminar should expect, and then anything else that we can think of to talk about. But I think we should take a little break and put in a word from our sponsor. You're listing to the Nation's Blind Podcast.
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Melissa Riccobono: Okay. We're back. So we talked about the Social Security issue briefly. Let's move on. What other issues do we have this year that we're talking to our legislators about?
Anil Lewis: I'm definitely excited about the accessible medical equipment piece of legislation, because it's not only legislation, it's also an initiative that we as an organization are addressing in several ways.
The legislation itself is seeking to mandate that medical equipment be non-visually accessible. I like the fact that we're focusing on the needs of blind individuals, but also I always like to focus on emphasizing that what we're asking for is not just going to allow blind individuals to take advantage of the new innovative medical equipment, home dialysis, accessible insulin pumps that people are using now to manage their diabetes. So many of them, the strategies that we're promoting are going to help everyone.
I keep on trying to emphasize that, yeah, now I as a blind diabetic if I got to the point where I needed to use an insulin pump would be able to use it independently to make sure I maintain my health, but you as sighted individuals who are using insulin pumps will find that the non-visual way of accessing this technology is like a multimodal way of making them more effective as well.
And we do this in a way I think that's important when we talk about the efficacy of how it improves our quality of life, but I also think that we need to stress in more and more of our conversations that this is not just something that's going to help blind individuals.
That helps us in several ways. One, in telling our stories it becomes real to our legislators, and making sure that they recognize that there is a positive externality, right? That it's going to impact not just blind individuals, which they always talk about being such a small population of their constituents, but if they recognize that this has carryover then they're more likely to support it.
Then the peripheral ways that we're supporting this too is we have our blind diabetics, our members, they are actually having conversations with the developers and manufacturers of these technologies, so we have a very active engagement with different manufacturers of a variety of different insulin pumps. And in the same way we've done a lot around working with individuals who are developing COVID tests, to make sure they're accessible. Again, it makes it possible for us to use it, but it also makes it easier for everyone to use.
Chris Danielsen: And how annoying and ironic and really tragic is it, potentially tragic in individual cases, that... I mean diabetes is one of the leading causes of blindness and other disabilities. It can cause other disabilities too. And it just makes me a little bit crazy to think that the means of controlling that and mitigating its effects are not accessible to so many people that are affected by it.
So it really is a critical thing, and it really makes the point too that so many people who are not well informed when they talk about accessibility, "Oh, so you couldn't use a website when you wanted to or whatever. Just go use a different website." No. Accessibility is critical. Depending on the situation, it can be a life and death matter. You cannot expect any person with a disability and any blind person to control their health outcomes.
We always use the example of insulin pumps, but this is also about heart monitors, it's about CPAP machines, it's about home dialysis, all of these things. And we're going to make those easier for everybody to use, and it maintains people's independence. It will ultimately put less of a stress on the healthcare system in terms of having to provide home care for people, all of those things. I mean it's just such an important piece of legislation.
Melissa Riccobono: Wow, you seem pretty passionate about that. You should probably go to Washington and advocate for that.
Chris Danielsen: Maybe I should do that. Great idea. If only there were a way.
Anil Lewis: Me and a few hundred of my friends are going to be there the week of January 29th if you want to come join us.
Melissa Riccobono: Wow. Maybe I will. We've talked about Social Security and we've talked about the medical devices. I think actually this next one in some ways is kind of hand-in-hand with not exactly medical devices, but kind of what you were saying, Chris, regarding websites and you can't just always go to a different website. What's this next issue?
Chris Danielsen: This is the Websites and Software Applications Accessibility Act, the WS-triple A as I like to call it.
Anil Lewis: Oh, my goodness. We got the DDI, who are going to discuss the WS-triple A and DUB.
Melissa Riccobono: And NSD.
Chris Danielsen: Too many acronyms. Too many acronyms. We really don't favor acronyms as an organization. We really do like to say National Federation of the Blind for example. But the Websites and Software Applications Accessibility Act is exactly what it says.
Now to be clear, we have always said, and many, although not all courts, have agreed with us that the Americans with Disabilities Act already covers websites and software applications. However, there are some people who don't agree, and there are some people who say Even so, we don't really know what accessibility means, and we don't know what the standards are, and we don't know what it is we exactly need to do.
So this is to fix all of that and finally put into a piece of legislation what the standard is for making sure that websites and software applications and mobile apps are actually accessible to and usable by blind people. And as Anil was saying earlier, when we make things more accessible they tend to become more usable for everybody.
And it's going to help businesses, because we get asked all the time What are you doing to help businesses make their websites more accessible? There are plenty of things we do through our Center for Excellence in Non-visual Access, for example, but this is an actual way that businesses will have and government entities will have a piece of legislation that they can look to and say this is what we need to do, this is the standard that we need to meet in order to make sure that our website and software applications are accessible.
And it's not just about convenience. Going back to healthcare, there's so much telehealth now, and I speak from experience. Telehealth stuff is wonderful when it works and when it's accessible. Just last week I had a health issue that I was concerned about. I wasn't sure if I needed to go in and see my doctor or just needed some guidance, and I was able to send my doctor a message and say what should I do about this, and he was able to just reply and give me some advice on how to proceed, because it was a situation where he did not feel that he needed a visit from to correctly assess my symptoms and help me deal with it. But although I was using an accessible system, there are still systems that are not accessible.
Anil Lewis: Yeah. This is an extremely important issue, because even to the point where accessibility is important, it's even more important because the ways that we used to access this information and these services is getting unavailable. Senator Casey at one of the hearings talked about this being the virtual front door, and it is, to public services.
You want to apply for Social Security, they're going to tell you to go to the web. You want to apply for unemployment benefits, they're going to tell you to go to the web. And if you ever even try to call a Social Security office, good Lord, pack a lunch. If you ever go to a Social Security office, good luck trying to get in there.
All those ways that we were able to access the services, those physical doors are basically closed, and the virtual doors, if they're not accessible it prohibits us from accessing the public services, and not just public services, the private services. And I'm loving that fact that so many more of the apps are becoming more accessible. I love that I can get a variety of different apps.
I don't want to give them a shout out, because then the relationships that we have with some of our partners may feel slighted, but let's just say I can order groceries very easily on an app. I can schedule rides on an app, it's so many things. And the thing that really is so amazing is people think that this is such a difficult thing to do, but that's only because there are people that are thinking with I tell people the Smith Corona mindset in the world where we're using Microsoft Word.
So, yeah, someone who's used to that pica, loading the paper and making sure there's an appropriate ribbon, with some white-out, yeah, they're going to be intimidated when creating their accessible Word page, but now you almost have to go out of your way to create something inaccessible in Word, because Microsoft has built in this accessibility. The same with Google. They've built in accessibility. It's almost like you have to say I refuse to make this accessible.
Melissa Riccobono: That's very true, but unfortunately, especially with apps, an app can be accessible one day and then they update it and it's inaccessible the next. And people can make an app from the ground up that is not accessible. There is a healthcare provider here in Baltimore and their whole thing is how they are for everybody in healthcare and equity for everyone, and their app is the most inaccessible thing I think I've seen in years.
I don't know why. I've talked to them about it. Anyway, that s a whole other story, but that's impactful for me. I can't go on and check on my children's appointments. I can't go on and message their doctors or ask them a question. And just like you said, Anil, I can call them, but gosh almighty, being on hold with them is horrible, and then I can't even get right to the doctor. I have to speak to a receptionist, who then leaves a message for the doctor, and the first thing the receptionist asks me is, "Have you left a message on the app," and I have to say, "No, because I can't use the app."
Anil Lewis: That's the example of the Smith Corona attitude.
Melissa Riccobono: Exactly.
Anil Lewis: It's not like they can't. It's not like it's difficult.
Melissa Riccobono: No, it's not. The other thing is even medically this has... Not only does healthcare, but I have a CPAP, and the reason my CPAP is even somewhat accessible is because the app has been historically accessible, so I'm able to look at my stats for each night, how many hours I wore it, whether my mask was sealed correctly, how many apnea events I had each hour, all of those things. If they change that app and it becomes inaccessible, then my CPAP is inaccessible.
So it sort of goes hand-in-hand. It kind of makes sense that we're kind of doing both of these issues at one time, because they are different issues and yet they do have a lot of things that work together with each other, so that's a really good issue.
Chris Danielsen: I have a new air fryer and if they make their app inaccessible then I'm really going to be in trouble, because there are no buttons on this thing at all, so it really is important. So those are our three big issues now. It is important for listeners to know, I think, that the Accessible Technology Affordability Act, we are still working on that. We are still working on some other priorities, and for the first time this year we actually have a dedicated webpage for other legislative concerns that we're still working on, and we're always working on things throughout the year.
For example, one of the new reasons that the Websites and Software Applications Accessibility Act is needed is because the Department of Justice did such an abysmal job of coming up with ADA regulations about accessibility and in the fall of last year we had to have a word of prayer with them about the seven new exceptions to the ADA that they were getting ready to introduce.
Anil Lewis: Yeah. That was extremely frustrating. Talk about a Smith Corona attitude, all of the seven exceptions that were placed in that whole litany were just things that were absent of knowledge of how easy it is to make things accessible. They were acting like we were still back in the time when we were converting from DOS to Windows. It was just really interesting that they didn't want to make exceptions for people to get away with doing something that is really just unnecessary today.
Chris Danielsen: Well, unnecessary and like defeated the whole purpose. I mean one of their exceptions was okay, if it's password protected content for a particular education class then it doesn't need to be accessible, and I'm like, "Oh, really? What if a blind person is in that class?"
Melissa Riccobono: What if a blind person is teaching that class?
Chris Danielsen: Yeah.
Anil Lewis: Is there any education content that is not password protected?
Chris Danielsen: Seriously. So we're always working on other things as well, and we do have a paid staff that works on those. John Par leads our Advocacy and Policy team that works on those. But I can't tell you... Just to kind of as we bring this around toward finalizing this discussion, I have actually heard members of Congress say... And my apologies for not using gender-neutral terminology earlier, but I have actually heard members of Congress say, "The reason that the National Federation of the Blind is so effective is because you as blind people, your members show up and tell us about your lived experience and how these things are affecting you. We hear from paid lobbyists all the time. We don't hear enough from ordinary Americans who are telling us what their lives are like, and it makes a difference."
Anil Lewis: I would also offer, and it's very important, we're non-partisan. Within the Federation we have Dems, Republicans, Libertarians, whatever. I remember one of the greatest thrills I had, of course, was going to DC and actually meeting in person with Congressman John Lewis, and that turned into a really nice friendship that evolved, and my partner, my compadre when I worked over in Advocacy and Policy, Jesse Hartle, he's a Republican, and he had an opportunity to work as an intern for Georgia Congressman Jack Kingston.
So we recognize that blindness has no political affiliation and we try to make sure that we use our lived experience and our expertise around our needs to influence and encourage all of the members of Congress to develop policy that's going to help us live the lives we want.
Melissa Riccobono: Absolutely. So just a few logistical things. Please go to nfb.org/washington-seminar. There you can find all of the fact sheets, and especially if you're going to Washington Seminar, reading those through and really getting yourself familiar, thinking about stories or things that you might want to say if you get the chance is a really powerful way to prepare.
Make sure that your state affiliate president knows that you're coming, because usually presidents assign teams to go out to the various offices, and they would definitely want to know that you're going to be there in Washington, be available to help with the advocacy work. It's much better to go in as a team and not have to go in... I know the first time I was elated to be there, but also scared to death, so I was very happy to have a team behind me, and I think a lot of people feel that way, so make sure that your affiliate president knows.
Take advantage of the training. There is always a training I want to say like 2:00 or 3:00 on that Monday in the hotel. That's a really good time to ask questions, to sometimes do some role plays, to hear about the issues, and then of course the Great Gathering In is at 5:00 PM, and you don't want to miss that, because it's almost like a mini-convention. There's usually some really nice speakers. President Riccobono let's us know a little bit about what we've been doing since convention and gets us pumped up for Washington Seminar, the work ahead, so you don't want to miss that.
If you're not able to come to Washington Seminar please be familiar with our fact sheets, because oftentimes we do send out legislative alerts and we say, okay, we need people to make calls because we're trying to get more sponsors, and you can actually go visit your legislator when they come back for a recess in your state. That's just as valuable, sometimes even more valuable, because if you're right in their district and they've heard it from people in DC and now they're hearing it from somebody else back at home, that's powerful.
You can send emails to support our legislation. There's a lot you can do even if you can't be in Washington with us, so making sure that you're able to pay attention to that and know what's going on. Then I just encourage you, even if you're not a super political person, this is an experience that is... It's amazing. It is so cool to hear all the canes tapping in the different buildings, to know that you are part of a movement, a march, and it's an amazing experience, so I just encourage everybody to think about it.
If you're not able to come this year, really think about whether you can come next year or the year after. We'll keep going, and we're working hard, and we just want as many people as possible to work with us, but there are other ways to work, even if you can't meet us and join us in Washington.
Chris Danielsen: Yeah. Two things that that makes me think of, just by being there as part of a team and tapping your cane in the Capitol or using your guide dog, that is a demonstration of our independence that members of Congress and their staff do notice.
Then the other piece is Melissa was talking about your stories. A lot of times your affiliate leader will get the folks that are at Washington Seminar together and say who's going to talk about which issue in the appointments just so that the appointments run smoothly. But you can say at those meetings, "I have a story about this particular issue that I would like to tell." Think about not just memorizing the fact sheets, but what is your story about the impact that these issues have on you.
Melissa Riccobono: And not only would legislators like to hear your stories, but we'd love to hear your stories/your feedback on this episode and on future episodes. As always we're looking for that. You can give us a call at 410-659-9314, extension 2444.
Anil Lewis: You could email us at [email protected].
Melissa Riccobono: You can also look for us on Facebook. Just search for National Federation of the Blind.
Anil Lewis: I'm glad that Melissa knows all of the social media stuff. I'm old school, as you all know. But I don't know about you guys, I'm excited about DC and I'm hoping that our Nation's Blind Podcast listeners will be there. If you are, I'm looking forward to seeing you, hearing your stories. And if you're not, I'm looking forward to talking to you on the next episode of the Nation's Blind Podcast. And remember, until then you can live the life you want.
Melissa Riccobono: Blindness is not what holds you back.
Announcer [over music]: We'd love your feedback. Email [email protected] or call 410-659-9314, extension 2444.