Announcer:
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 once again to the Nation's Blind Podcast. In case you don't know, I am Melissa Riccobono and I am here with the co-host of the Nation's Blind Podcast...
Anil Lewis:
Anil Lewis, just in case you didn't know.
Melissa Riccobono:
Absolutely. How are you, Anil?
Anil Lewis:
I'm doing great. So funny to our audience, we record some of these back to back and it's almost kind of weird, like weren't we just doing this? (Anil and Melissa laugh).
Melissa Riccobono:
Deja vu (singing: dodododo) or Groundhog Day, (singing: I got you, babe).
Anil Lewis:
Wow Melissa (Anil and Melissa laugh).
Melissa Riccobono:
A little punchy. This is the second one. You never know what's going to happen (Anil and Melissa laugh).
Anil Lewis:
Get a little coffee between recordings. Yeah.
Melissa Riccobono:
I got some water, but yeah, I had the same effect, I guess (Melissa laughs).
Anil Lewis:
That's Baltimore's finest right there.
Melissa Riccobono:
(Laughs) you never know.
Anil Lewis:
So, what are we talking about today, Melissa?
Melissa Riccobono:
We are talking about advocacy and certainly this is a topic that we've talked a lot about and we'll probably always talk about because it's so important, but we're talking about it because we just had our Washington Seminar at the last part of January, early part of February, and now it's March. So, there you go.
Anil Lewis:
One of the most fundamental events that we host as this organization is founded on fighting for the rights of blind individuals. Our Washington Seminar, formerly called our March on Washington, really was one of the most transformative experiences in my life to let me know that I had power and influence and ability to affect public policy.
Melissa Riccobono:
So true and almost, it's a tough one, but almost more powerful for me than National Convention because National Convention was wonderful...
Anil Lewis:
But it's broader impact. Broader impact. This is really surgical.
Melissa Riccobono:
But this is like I'm actually in the offices of my Congress people. I'm doing the things that we talked about in government that you can do, and I'm doing it with other people and I'm doing it not just to do it, but because I believe in what we're advocating for.
Anil Lewis:
Sure. For our listeners who are not familiar with what the Washington Seminar is, every year, usually around the end of January, early February, about 500 or more of our members take their time and energy effort and come to Washington DC and we are very strategic around it. We offer trainings around specific issues, and we usually have three huge legislative issues along with some other peripheral pieces that we like to advocate for. And we train our members how to effectively engage with their members of Congress so that we can continue to convey the policy changes that we as blind people need to be implemented in order for us to live the lives we want. I mean, 500 people walking through the halls of Congress, it's memorable. People know that we're there.
Melissa Riccobono:
Definitely.
Anil Lewis:
They remember us for being there. It is one of the most empowering experiences I've ever had.
Melissa Riccobono:
Absolutely. And I think we have a clip from President Riccobono talking about Washington Seminar, so should we hear what he has to say about it?
Anil Lewis:
Sounds good to me.
President Riccobono:
The beauty of what the Federation has been doing for decades is we continue to talk to members of Congress, getting them to recognize that our issues impact everybody on all sides of any political line, and we try to tailor our messaging to the people we are talking to. Obviously Republican conservative members of Congress are going to have different interests than Democrats, but we believe that we can appeal to those interests in favor of making America better for blind people. And it's hard to say. I mean, there's been times when, yeah, things are an uphill battle, but you find champions in interesting places. And our strategy this year at our Washington Seminar has really been to talk about disability laws, disability rights, and the funding for programs that exist today. I think that's actually going to help us find some of those champions. And even now hearing some of the reports that have come from our activities on the Hill, I think our members have been surprised by certain members of Congress that they were sure would never be with us who said, look, we're going to stand strong for disability rights and for funding for these programs.
So you never know until you open up these conversations. And the beauty of it is we're not lobbyists coming speaking for somebody else. We're coming with our own lived experience, which is rare. I mean, mostly the people they get in their offices are someone representing someone else and we're there and can say, look, I just had this barrier this morning when I was trying to do something.
Melissa Riccobono:
Wow. So powerful.
Anil Lewis:
And I think that speaks to our key strength, the fact that we're doing it from our lived experience. When we walk into the room, we have more expertise in the topic we're talking about than the member of Congress or their staffer. And I think that that speaks to the truth of how we've been able to effectively move a legislative agenda. The other piece I think that's important is disability and blindness. It's nonpartisan. So yeah, we are able to find champions regardless of political affiliation, party, etc. So it's all about our ability to develop those relationships with those legislators.
Melissa Riccobono:
Definitely. And that was from episode 12 of Access On, our other new NFB podcast, so if you haven't listened to Access On check it out because there's lots of great information on there. Absolutely. But we have some guests here. We do have a couple people. Would you like to introduce the first one?
Anil Lewis:
Well, I can't choose because they're two of my favorite people.
Melissa Riccobono:
I know. They're two lovely ladies.
Anil Lewis:
Yeah, so if you choose one, I'll introduce the other.
Melissa Riccobono:
Okay. Well gosh. Well, I'll go alphabetically.
Anil Lewis:
Nice.
Melissa Riccobono:
I'll go alphabetically backwards because I'm sure this person never gets introduced first. So I'm going to introduce Liz Wisecarver, how are you, Liz?
Liz Wisecarver:
Hey, I am doing good. I'm glad to be here with you all.
Melissa Riccobono:
Great. Want to tell the people at home a little bit about who you are, and then we'll get into in a little while about your experiences with Washington Seminar, but let's just hear a little bit about who you are and what you do.
Liz Wisecarver:
Sure. Well, I live in Houston and I am an active member of the National Federation of the Blind. I've been a member since 2010, so I guess I'm a veteran at it now. And I work for the NFB of Texas as our NFB Newsline Coordinator, and that's been a really fun job. I've loved it. I get to talk to blind people all over the state and sometimes elsewhere and share our positive philosophy about blindness and resources. And Madam President Norma Crosby asked me to serve as the legislative director for Texas, I think in 2016 or 17. So I've enjoyed doing that and helping at Washington Seminar for, oh goodness, for quite some time now. So it's always a fun experience and really energizing.
Melissa Riccobono:
And do you have a journalism background as well?
Liz Wisecarver:
I do, yeah. My undergraduate degree was in journalism, and then after I went to the Louisiana Center for the Blind, I was really fascinated by how a lot of blind people, including myself before going to LCB, didn't really get a lot of good quality non-visual skills training. So after I finished up at the Louisiana Center, I enrolled in Louisiana Tech University and got a master's in orientation and mobility. So, just trying to give back.
Anil Lewis:
Very nice.
Melissa Riccobono:
Wonderful. I think you taught a class for my daughter, Oriana.
Liz Wisecarver:
Yes.
Melissa Riccobono:
Where the kids actually were blind kids and they actually wrote their own news articles and then they got to hear them published on the Newsline service. So what a cool class. What a cool opportunity. Maybe you and I should team up sometime because I think doing that with writing and maybe also some podcasting or other kind of communications would be a really fun opportunity. But I digress (Melissa and Anil laugh). Let's put that on the back burner (Melissa laughs).
Anil Lewis:
Melissa seizing the opportunity to get things done. I'm not mad at you at all.
Melissa Riccobono:
Yeah, I just thought of it as I was talking to Liz.
Anil Lewis:
So I'll introduce our second guess. And when you said alphabetical, I'm like, she's going to win both first name and last name. But then you flipped it into, I'll start from reverse order. So that was nice. But this individual, she's just following in my footsteps. She became an affiliate president (Melissa laughs), much like I was an affiliate president. She became a member of the National Board of Directors, like I was the member of National Board of Directors. She became a member of the Jacobus tenBroek Foundation board. I mean, she's just following my footsteps and I'm glad that I'm able to lay this path down (Anil laughs). No, she is one of my favorite people out of Illinois. Denise Avant. Denise, why don't you introduce yourself to our listeners?
Denise Avant:
Well, hello everyone. And Anil, that's the only way to go is to follow after you (Anil laughs).
Melissa Riccobono:
There's usually good chocolate if you're following behind Anil (Melissa laughs).
Anil Lewis:
Yes, that's true.
Melissa Riccobono:
I will say though, Denise, you're a lawyer and I don't think Anil is.
Anil Lewis:
Nice. I see the hate (Melissa and Denise laugh). The haters gonna hate. Yeah. I had one year of law school and decided I don't want to be a lawyer (Anil laughs).
Melissa Riccobono:
Okay, well, hey, that's one more that I have, so there you go. So go ahead Denise. I'm sorry.
Denise Avant:
No, it's fine. Well, maybe we can persuade you to go back Anil.
Anil Lewis:
Oh, no, no, no, no (Anil laughs).
Denise Avant:
Well, my name is Denise Avant and I live in Chicago. I became an active member of the National Federation of Blind in 2005, and I slowly learned about our organization and got involved with our organization. I have held many roles in the Federation. I have served on many of our committees here in Illinois. As Anil alluded to, I have been a state president for six years. I also have served on our national board before six years. I've served on our national scholarship committee as well as our state scholarship committee. And I am now the first vice president of the affiliate. Our current president asked me to become the legislative or one of the legislative directors back in 2020, and that's a job I have been doing ever since she asked.
Melissa Riccobono:
Nice. So both of you are veterans. What was your first Washington Seminar and was there any highlights? What was it like and what year was it?
Liz Wisecarver:
My first Washington Seminar was in 2011 and I went with the Louisiana Center as a student, so that was really exciting. It was also the first time I had flown, and it was one of the first trips that I'd done more without sighted friends or family members. It was mostly just me and other blind friends and students. So that was really invigorating, just the experience on its own and being able to go into the halls of Congress and into their offices and speak with them. I really learned what a tight-knit community the Hill is. You'll see some of the same staffers each and every year, and you'll see them in different offices sometimes. And it was really fascinating to see how we're getting our work done directly with influencing legislation. So it was a really great experience and it's one of my favorite events.
Anil Lewis:
Nice.
Denise Avant:
My first experience was in 2009. I decided to apply to go to Washington Seminar and be part of the Illinois delegation. I think that was a time when we had gotten there and we were actually able to walk around to the White House. It was in the evening time, but it was when President Obama was, that was his first year in office. So that was quite a historic event. And of course we went to The Hill the next day and it was actually very empowering to go to The Hill and advocate on behalf of blind people trying to persuade the Congress people that the legislation that we had would actually benefit blind people. And of course in Illinois we always do training sessions before we go, so I felt prepared, but we also, of course when we get there, the team also arms us with the facts and explains how to handle the meetings. And so it was a very empowering experience and I think it really in a lot of ways helped me to really bond with our organization because it was something that I could really see firsthand how we advocated on behalf of blind people. And it's something that I always relate back to our resolutions process because a lot of these ideas from resolutions comes from the various resolutions that we pass at our National Convention.
Anil Lewis:
That's a very good point. That speaks to our membership, really decides our legislative agenda. It's executed and organized from a very competent staff in our advocacy and policy department, but President Riccobono gets that information from interacting with our members and through our formal resolutions process, he gets a sense of what national legislative issues we need to be addressing. And he and the board make that conscious decision and then we implement. So very good point.
Melissa Riccobono:
And so this year, one of our issues was the Blind Americans Return to Work Act. Does one of you want to talk a little bit about what that is? And then we have some questions that some of our followers asked us on social media. So I'd like to, I don't know, do you want me to do those questions first and we answer them, or what do we want to do?
Anil Lewis:
I definitely think we should get someone to describe the legislation.
Melissa Riccobono:
Okay. Alright, perfect. So Liz or Denise, go ahead.
Denise Avant:
So the Blind Americans Return to Work Act is really intended to get rid of the earnings cliff in the Title II of the Social Security Act, which covers SSDI, supplemental Social Security, Supplemental Disability Incomes. And this is aimed at people who have worked in the past, they've got their twenty quarters in, but let's say for some reason they have to come out of the workforce. Maybe they have lost vision and they need to go to the Louisiana Center and get training, and now they feel confident and they want to enter the workforce. But the problem is, of course, if they make for 2025, over $2,700 on a monthly basis, they will lose all of their benefits just by making $1 over. And so the bill, which is now a bill, HR 1175, what it would do is it would have a two for one phase out of the income requirements.
So a person would not suddenly lose all of their benefits. And it would also simplify the trial work period. Because if you make over a certain amount in any nine month period during a sixty month timeframe, you are also in danger of losing your benefits. And what we have found when you have these kinds of constraints, it really does force blind Americans in choosing whether or not they want to work, whether they want to maximize their earnings potential. We have seen that people have either asked for a reduction in hours or they have turned down raises or those kinds of things. So the bill is really designed to help Americans, blind Americans realize their true earning potential.
Anil Lewis:
One quick correction is the SSDI, Social Security Disability Insurance. And I only say that clearly to make people understand that we're not trying to get on the public dime. You have to, as Denise described, you have to work some quarters and you get that money taken out just like any other type of insurance payment you make. So you're entitled to this as a benefit because you paid those insurance payments. And if you acquire a disability, just like if you have home insurance and your house is damaged, that insurance is there to help you recover or mitigate those financial consequences. So that's what SSDI is, and it's not a windfall either, and people aren't living in the lap of luxury off of SSDI benefit, and we really are trying to make sure that people who are SSDI don't have a disincentive to go out and make real money.
Melissa Riccobono:
Well, and the thing is, if people are going out and making money, they're going to pay back into the system. So that's a good thing. Number two, the biggest thing is oftentimes it's the insurance. It's not so much the money, it's the...
Anil Lewis:
Health insurance.
Melissa Riccobono:
Health insurance that people, medical insurance. And especially if somebody is blind and has other disabilities and even if they don't have other disabilities, I mean, everybody should have medical insurance. That's a whole other issue. But hey, if I make more than $2,700, I'm not just going to lose my SSDI insurance payments, but I'm also going to lose my health insurance. Just like that with no, I mean there's no grace period. There's no anything. Yeah, no, that's really scary.
Anil Lewis:
I think it's also important to state, Denise says the bill's been introduced. Again, as we talked earlier, we build relationships across party lines. And Congressman Pete Sessions is the sponsor of the bill and Congressman Mfume is the democratic co-sponsor of the bill. I remember meeting with Congressman Sessions when I was over in our advocacy and policy department. Tremendous gentleman, really family oriented. And one of the things that always stands out to me is he has a true love and commitment to the scouts and that whole mantra of leave things better than you found it. And I think that's what he's truly committed to. And he recognizes that this particular piece of legislation is going to leave things better than he found it.
Melissa Riccobono:
So one person asked, "What exactly does this mean? Removing the salary cap for people on SSI?" You know a little bit about this, Anil, what are we trying to do here?
Anil Lewis:
Sure. They may be getting the programs mixed up. So SSDI, we've already discussed, SSI is a supplemental income for individuals who are below the poverty level and it provides a very minimum amount of money, but it is modeled after the strategy we're trying to implement. So if you're getting $250 a month on SSI, as you make $2, you lose $1 benefit, which makes sense because you're always to the good as you progress toward making more money. And that's where we want the same thing to happen with SSDI.
Melissa Riccobono:
Oh, okay, good. Another person asked, "Is this about the SGA, SSDI $2,700 monthly gross limitation?" And I think Denise, that was a yes, right? That's exactly what this is about.
Denise Avant:
Yes.
Melissa Riccobono:
And then another person said, "This is super exciting news. On the other hand, given the recent attacks on inclusion and accessibility and the attacks on newer regulations for section 504, this has me very concerned. I want to work and I want to know that I am truly included and that I can access my work, my workplace, and work materials."
Anil Lewis:
And I think it's important there's so much going on that we get lost in the smoke. So with all the DEI discussion that's going on, even with the inclusion of accessibility and DEI, we must remember that we have fundamental rights as people with disabilities. So we're not hopefully going to get caught up in, well, we are caught up in it, but hopefully the fact that we have disability legislation in place is going to be our anchor. And even with respect to the assault on the 504, it's really around just the addition of one definition, which I'm sure will end up playing itself out. But I'm hopeful that that's not going to be something that declares the whole provision unconstitutional. I mean, it's such a foundational element in disability rights. I mean, it's even kind of the foundation of the ADA itself. So I think that we will weather that particular storm. I don't know, Denise, Liz, if you guys had any thoughts on that?
Liz Wisecarver:
I do. First of all, I just want to say I'm so thankful that President Riccobono added the fourth fact sheet for this Washington Seminar that was titled "Laws and Funding Affecting Blind Americans." And so it touched on these issues that we're talking about now. The fact sheet had three pieces of legislation listed, which were the Americans with Disabilities Act, IDEA and their Rehabilitation Act. And then there were several programs such as the National Library Service, Vocational Rehabilitation, Older Individuals Who Are Blind program Medicaid and some others. And we asked our senators and congressmen, will you protect these established laws and services that greatly impact blind and disabled Americans? So I'm really glad about that. And related to the Section 504, Attorney General Kim Paxton of Texas started this suit and we recently got a call to action from Norma Crosby. We've started making calls to the Attorney General and to Governor Abbott asking them to drop this lawsuit of challenging the constitutionality of section 504. So I hope that will yield good results and we'll move forward with what we have to do if it doesn't.
Melissa Riccobono:
So I think that's a really good breaking point for just a second. We do have to pause for an ad, but I think when we come back from this ad, I think we should really talk about, first of all, Liz, your experience with Washington Seminar this year. Denise, if you want to talk more about any experiences in the past year, I understand you weren't able to attend this year, but then I think more importantly, we also need to talk about how can we, since Washington Seminar is over for the year, there must be ways that we can advocate in our own places of residents. So let's pause for this ad and then we'll come back and talk about those things.
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Melissa Riccobono:
All right, welcome back. So Liz, do you want to talk a little bit about what your experience was at Washington Seminar this year? How did the Congress people react when you were coming in and talking to them about all these different issues or their staff? I know you don't always see the Congress person.
Liz Wisecarver:
Yeah, definitely. So it was busy and energetic as usual. Texas, we have thirty-eight congressmen and two senators, so we have quite a few folks to see. And we break it up into teams of about three to five people. We had nine teams on The Hill this year, and they were mostly supportive. I saw staff members for my six appointments that I had. And of course with staffers, they're not usually going to give you a very firm yes, because they want the representative to be able to review it and speak for themselves. But we got mostly positive feedback. Some of them were very interested in the first fact sheet that I mentioned, the laws and funding affecting blind Americans, and were surprised that this was something that we were worried that could be affected and wanted to know more specific information. One office, for example, was really fascinated when we explained that the Older Individuals Who Are Blind program can help blind seniors be able to stay in their homes and not have to go into nursing homes. And they wanted some more information about that. And some of them were wondering about if these fundings were going to be limited or changed in any way since they were directly affecting people, they were being given out directly to recipients. So I think it's really starting a good conversation with that in particular.
Anil Lewis:
And I was there too, and it was really pleasantly surprising leading up to Washington Seminar with all the chaos, especially in the media, etc, you're thinking that the dynamic of that experience is going to change drastically. So didn't know what to be prepared for, but it really was wonderful to still go into those offices and still be respected as constituents. And I really applaud the members of Congress who actually took time to be present during those meetings. I know it's difficult with all the other things that they have going on, but it's really nice when we are respected to the degree that the member actually feels that their presence is essential, because again, we are actual constituents. We're not lobbyists as President Riccobono said, and it really means a lot. And that's when we can develop those relationships of understanding. Because one of the things I talked about to my member who unfortunately wasn't able to make the meeting, but I wrote subsequently and said, how are we supposed to really educate you about what's important if we can't meet with you?
Melissa Riccobono:
Yeah, really, really good point. Denise, I know you couldn't go this year, but what would you say to people who couldn't go this year? How can they, Liz certainly talked about being given sort of some marching orders from her affiliate president. How can people who weren't able to go still help us with this really important work when they're back at home?
Denise Avant:
So we are in the 119th Congress and we often tell not only the people who go to Washington Seminar from Illinois, but those who can't make it for whatever reason, that the real work actually starts when we get back home, when it comes time to write and call and ask the legislators in our home states to co-sponsor the legislation. And that's where your real work really starts at, because now members from across the state get to call and get to write and get to actually go to the local offices because our congress men and women do come back to the districts and it's our opportunity to go in and meet with them in person. I know that, for example, we would meet with Representative Jan Shakowsky who was the original sponsor of the Medical Device Non-Visual Accessibility Act in past Congress. We were able to go see her not just in Washington, but even when we were here at home in Chicago. So a lot of the work gets done and we follow up whenever the legislative directors see the Governmental Affairs division posting things, we immediately get on our listservs, get on our social media accounts and ask our members to go into these offices or write.
Melissa Riccobono:
Or call. I mean, the phone is still a really powerful tool. Absolutely. That's great. So Denise, that's a wonderful segue because we did have two other issues. We did have the medical devices accessibility that we were talking about, but we also talked about the Websites and Software Applications Accessibility Act, and we actually have another clip. Let's hear President Riccobono's input on the Websites and Software Application Accessibility Act that he spoke on, on the twelth episode of Access On.
President Riccobono:
There's a local entity here in the Baltimore area. It's a farm. They sell a lot of great products and bought a lot of stuff from them. And I called them one day because their website's really not that great. They said, "We're farmers. We're not website developers." A lot of businesses out there like that. So they often get some third party platform that will easily allow them to have a website, they have no idea what the coding is, or if they want to put a shopping cart, they select that widget and it goes on their site. So they're not doing any of that backend coding work. And so our website bill addresses that by making sure there is some accountability and liability for those third party platforms and to give small businesses some degree of protection when it's really the platform that is causing the issue.
And that's really key because these platforms we've looked at, studied, can't we bring some kind of case against these platforms? Very hard to do in the way the current laws are written. So that's one thing I would say is that this bill actually makes it better for small businesses. It gives them more protection. And yes, there's a market, but also the small businesses that are even trying to appeal to that market are unintentionally getting shut out because of the platforms that they're using and they don't have a clear mechanism to hold those platforms accountable today.
Melissa Riccobono:
So I think you get a little bit of a gist about what the act is about, but maybe Liz, do you want to talk a little bit about what the Website and Application Accessibility Act would do?
Liz Wisecarver:
Right, and just as President Riccobono said, these companies aren't trying to purposefully put out unusable websites that are not accessible to us. They just don't know what that means. So this legislation would establish what a standard for accessibility means, what that would look like, and it's much easier for programmers and developers to put in that code for accessibility on the beginning of the process instead of having to retrofit. And we believe that if they know what accessibility guidelines look like and what they're needing to do, that will also help those small businesses. It will also put the need of making the websites and applications accessible on the small businesses rather than holding the company itself responsible.
Anil Lewis:
Yeah, I think it's really important to understand that coding in a way that makes things accessible is really just good coding. A lot of people try to make it seem like it's extra and it's really not. It's just a matter of making sure that as people learn to program or code and develop these websites and apps, etc, that they know the best way to do it to make it accessible. Because an accessible website or app is not just good for blind people. It's really best practice and creates a better user experience for everybody concerned. So to Liz's point, it's much easier to do it when it's being developed as opposed to developing something nice and then coming back at it and saying, oh, now we need to make it accessible.
Melissa Riccobono:
And if we could get those platforms to be accessible right out of the box, that would be an amazing help for everybody. I think what President Riccobono didn't mention, I'm pretty sure it was the same company or same small business that he was talking about, I think one of the things they said when he was on the phone with them, aside from we're farmers, we're not web developers, was "Our website's not good for anybody. Nobody likes our website" (Melissa and Anil laugh). I think that was them. I know that he's had that discussion certainly with businesses before. And so anyway, I totally echo Anil what you're saying, and I think it's true for this next one as well. Our fourth issue, we did have that extra one regarding the bills and the funding, which wasn't really an issue as much as it was. We weren't talking about doing anything aside from protecting the laws that are already in place and being aware of them. But the Medical Device Non-Visual Accessibility Act, this is an act that would be beneficial to everybody. Devices that beep, talk, have auditory feedback that are medical that would allow people to stay in their homes and be able to handle their own medical affairs and their own dialysis, their own cancer treatments, have a blind person be able to help a parent, a loved one, a child with some of these things, oxygen, sleep apnea equipment, insulin pumps, all of these things. It will help so many people. And I truly believe that people just don't think about it. But I think there are many, many sighted people, just like the last episode we were talking about audio books being something that sighted people now all of a sudden love, and it was blind people that did it first, audio description as well. I think that if more things talked and were easier to use and kind of helped talk you through step by step, and you wouldn't just get visual confirmation, but you'd also get audio confirmation of some kind, I think that would make everybody feel safer. And if a senior starts losing their vision, they wouldn't have to get any new equipment or anything else. They would still be able to use what they're used to.
Anil Lewis:
Absolutely.
Melissa Riccobono:
And so I just think this is such an important thing. And I know Denise, you've talked a lot about this with Jankowski and with others. So do you have anything else to add about that?
Denise Avant:
Well, I think that having devices be accessible is really starting to be not just a, oh, I would like this. This is actually starting to be a necessity because we have not all the in-home, but we also have the telehealth whereby you basically visit with a physician or a nurse practitioner over Zoom and you have to be able to take your own vitals, your temperature, your blood pressure or all of those kinds of things. And so it's critical that we be able to going forward, have medical devices that we can get right off the shelf that will work because sometimes when you have to try to look for something that's blindness specific, it can be hard to find. And so just trying to be able to go in and purchase something right off the shelf that you don't have to really jump through a lot of hoops to get to, that would be great. And also, I think too, we don't talk about this, but it is a privacy issue. Maybe I don't want people to know what my blood pressure is today or anything else. So it gives me the option. And then it's not like I have to have a lot of people think we have people coming in and taking care of us every day. That's not true. So we could get these devices accessible to us. We get to just do all of this stuff on our own.
Melissa Riccobono:
And that's so true. And stuff that's actually accurate. I had a talking scale and it was made I think specifically for blind people. And I don't know (Anil laughs), it got old and it lasted through a couple moves and things, but eventually my husband and I realized this is not super accurate.
Anil Lewis:
Well, did it say you were heavier or lighter? Because if it says you're lighter, I'd keep it (Anil laughs).
Melissa Riccobono:
No, no, no. It said we were heavier and we didn't like that. And I mean, we were heavier than we wanted to be, but let's be clear (Anil amd Melissa laugh). But we bought a scale out of the box. Now we are technology savvy, and so we were able to use it with an app, but I found it so much more accurate and I trusted it so much more than my doctor's scale where they actually were balancing the weight still and trying to get a good weight. And I don't know, this eighteen-year-old was trying to do it. And I mean, they had me like nine pounds heavier, and I could actually show them the app and say, look, I weighed myself this morning. This is what my scale said, and here's what my scale said the last few weeks. So it wasn't an outlying type thing. And I said, yes, I definitely would like to lose some weight, but I'm not as heavy as you're saying I am (Melissa laughs). And that's really important. And that wasn't a blindness specific product. Now, some blindness specific products are great and fine, but some don't have the quality. And so we should be able to just have those that are outside just out of the box like everybody else.
Anil Lewis:
And it's so much easier when it's a mainstream product because then you're getting the same support that everybody else is, and it's a device that everybody else is familiar with. But I think to Denise's point, the way that things are evolving, like with telehealth, same, I have a scale that's connected bluetooth. When I weigh myself, it puts it in the app. I have a blood pressure monitor, bluetooth, it puts it in the app, it consolidates it all. And I can share that with my medical professional. And without the accessibility, I wouldn't be able to do that. And it's again, in addition to the multimodal way of accessing information, which is going to be beneficial to everybody, the whole cost savings is beneficial to everybody. There's data out there that shows that being able to treat yourself in the house rather than having to go to the hospital for whatever reason, is going to cost everybody less money because it usually ends up being part of the public dollar that helps support that emergency room visit because you can't take care of yourself on a regular basis or that hospital stay because you haven't been able to monitor whatever levels that end up resulting in you having to be admitted. So it's a win-win again for everybody and provides better health care for everyone.
Melissa Riccobono:
Well, and it just helps so much. I have sleep apnea and I also have chronic fatigue. So that's a really tough two things to separate sometimes. Am I tired because I have chronic fatigue or am I tired because I have sleep apnea and because I have access to the data from my CPAP, if I'm unusually tired, I can figure out am I having a lot of apnea events at night? Is there some kind of a weird uptick, which a few, several months ago that was the case, and so I had to go, but I was able to just, like you said, Anil, I was able to then make that appointment with the correct doctor and not start with my chronic fatigue specialist, but realize, oh, nope, this is something with my apnea that's going on. And so I was able to make that appointment with the correct doctor. They were able to see that data and they said, oh yeah, no, you're right. Let's change this and this, and got me back on track. And just so important, just incredibly important.
Anil Lewis:
Liz has no medical issues, so this is not even relevant to her.
Melissa Riccobono:
Yeah, Liz you're super healthy (Melissa laughs).
Anil Lewis:
Just live long enough, Liz (Liz laughs), you'll be right here with us. One of us.
Melissa Riccobono:
Live long and prosper (Melissa laughs).
Liz Wisecarver:
There we go. Oh man, we had a horror story from one of our members about a CPAP machine. It was during the pandemic where of course everything was on lockdown and it was hard to even get out to get to your doctor's appointment. And she spilled a little bit of water on the screen of the CPap with the water like the reservoir. And so she wiped it off, and in the process, it changed the settings of the CPaP (Melissa gasps) and they couldn't fix it. She was blind and living by herself, and she had to schedule a whole doctor's appointment, take the whole machine in some week or so later. So I mean, this really affects people's lives.
Melissa Riccobono:
Absolutely. Yeah. And that's just bad design. I'm sorry, but that's horrible design for anybody that shouldn't happen. And a lot of the newer ones now that doesn't because you can't, only a doctor can change your settings because of that very thing. But anyway.
Anil Lewis:
And it speaks to what we're talking about earlier with the whole website accessibility. Most of these things are being operated by apps now through touchscreen technology that we know can be made readily accessible. So this is the opportunity to build that bridge. So most of the medical manufacturers, when you're talking about that piece, are really adopting more of an accessibility infrastructure. I recognize, of course, the form factor around that is usually five years or so. So if it's an actual physical change that needs to be made, that's going to take a lot longer than just updating a software or making an app accessible.
Melissa Riccobono:
But I would say too, it should be both because not everybody is really super. I mean, eventually, I think eventually we'll get there. We'll get to a point where everybody's grown up with a phone in their hand and the apps, I mean, maybe we'll have some device implanted. Goodness only knows what's going to happen in the future. But I look at my mom and the poor lady can't even decide sometimes whether she's gotten a text from somebody or an email, whether she's online, she's great, she's 79-years-old, she does do text, she does do email. But to have her actually learn an app to do something like take her own blood pressure, I think would be really difficult for her at this point. And she's fully sighted, but I feel like we can't just ignore the machines themselves either. We've got to make sure that it's a both situation.
Anil Lewis:
Agreed, again, it's that multimodal aspect of getting access to information. But I was just stating the point that as we move toward more and more of that, I love the fact again that I can integrate all of that and seamlessly have that populate in a way that I can share it very readily with the medical professional. And in the future, it's just going to be implants. You're just going to have a little implant in your arm monitors your blood pressure...
Melissa Riccobono:
Oh dear.
Anil Lewis:
All of that. And it'll send it through the (Anil laughs).
Melissa Riccobono:
Oh dear. And on that note (Melissa and Anil laugh).
Anil Lewis:
Don't be scared, Melissa. Don't be scared.
Melissa Riccobono:
I'm scared. I can't even listen to Mark AI for all that long. And now you're talking about something implanted in my arm to monitor my vitals. Come on.
Anil Lewis:
Denise, Liz, you guys have anything you want to share before we call it a day?
Liz Wisecarver:
Yeah, I would say if you're interested in going to Washington Seminar, reach out to your chapter and your affiliate president and folks who have been, don't be afraid that you have to be an absolute expert in all the legislation and all the language.
Anil Lewis:
Good point.
Liz Wisecarver:
Usually when you go your first time, you're not doing a whole whole lot of talking. You might share a personal story that's related to it, but please give it a shot. We need to share our personal experiences and our authentic blindness with our congresspeople. So I'd encourage you to check it out.
Anil Lewis:
Nice.
Denise Avant:
And I think that it's important for people to go, believe it or not, members of Congress truly enjoy the experience. I've had at least one of our congressmen say when the pandemic was over that how happy he was to see us back on The Hill walking through with our white canes or dogs and just functioning on The Hill. I think it's a real opportunity for us to educate members of Congress that blind people are capable and we are capable of functioning in society like everyone else.
Anil Lewis:
Points well made. So hopefully this has encouraged other individuals to really take charge of their lives by participating actively in our Washington Seminar effort, be the change you want to see.
Melissa Riccobono:
And I would say too, it's not just Washington Seminar. Oftentimes states have local legislation that they push for, and there's always things in your community, and that's really the beauty of our chapters. That's where the grassroots advocacy happens. So it's not just if being a part of the national stage sort of scares you and you want to start out small, work with your chapter to get a better bus service in your town, or, I don't know, Braille on your ATM at your bank or whatever it is, there's probably a million things in your daily life that you think, gosh, somebody should do something about that. And maybe it's you and maybe it's your chapter that can help you get there.
Anil Lewis:
Very nice.
Melissa Riccobono:
Strength in numbers.
Anil Lewis:
Very nice. Well, that's it. We'd love to hear those stories. If you have a personal experience where you've advocated, that would be awesome to share with our listeners.
Melissa Riccobono:
Oh my gosh, yes, please.
Anil Lewis:
As a matter of fact, that's your homework assignment between this episode and the next, go out and change something for the better in your community and let us know what you did. But until then...
Melissa Riccobono:
Love it.
Anil Lewis:
Remember, you can live the life you want.
Melissa Riccobono:
Blindness is not what holds you back.
Announcer:
We'd love your feedback. Email [email protected] or call 410-659-9314, extension 2444.