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 to the Nation's Blind Podcast. I'm Melissa Riccobono, and I am here with...
Anil Lewis:
Anil Lewis, and I'm proud to be here with Melissa Riccobono.
Melissa Riccobono:
Well, I'm proud to be here with Anil Lewis.
Anil Lewis:
So Melissa, I just got back from the NFB of Colorado Convention, and of course people love the Nation's Blind Podcast.
Melissa Riccobono:
Well, yay! I'm glad they're listening!
Anil Lewis:
Primarily because you are there and I tell people I said, "I enjoy doing this podcast with Melissa, but I'm just going to tell you guys for Melissa, it's an addiction (Melissa laughs, Anil chuckles)." This is what Melissa lives for. Yeah, so you have a very strong fan base there.
Melissa Riccobono:
Aww, well, thank you to my, oh my gosh, should I embarrass my children? Yeah, let's go for it (Anil chuckles). Thanks to my peeps in Colorado (Melissa and Anil laugh) for being fans and for listening to the podcast.
Anil Lewis:
Yeah, that's not embarrassing.
Melissa Riccobono:
We always joke that the microphone will have to be pulled from my hand. I'm not going to voluntarily let it go (Melissa and Anil laugh).
Anil Lewis:
No one's going to have you let it go. I'm sure that if they even try, you would advocate for something else to happen.
Melissa Riccobono:
Oh, I see what you did there.
Anil Lewis:
I tried. It was weak, but it worked.
Melissa Riccobono:
We're going to talk about advocacy, aren't we?
Anil Lewis:
Yes, yes. We're going to talk (chuckles) about advocacy and get past that weak segue. Yes (Anil and Melissa laugh).
Melissa Riccobono:
So what are we advocating for today, Anil? Or what are we talking about? Advocacy about?
Anil Lewis:
Well, we're talking about how the Federation advocates in this current climate, and I think, and this is one thing I reiterated when I was in Colorado as well, things go so well for the Federation, but I think sometimes we get so focused on the wonderful successes that we have that we don't continue to remember that to our core, we're a grassroots organization.
And even in the face of all this uncertainty and people being afraid of what's going to happen next, I mean, this is when we're at our best. So looking at what we're confronting around the different changes in government and the reduction in force and the reduction of money and the services that are being provided that we know are essential for our success in this world, this is where we earn our bread and butter.
This is where we, steel sharpens steel on this one. So we're going to be talking about that. We have some really wonderful guests to help us talk about this effort. We have Leah Campbell from Oklahoma, a growing wonderful friend of mine through our Kenneth Jernigan Leadership-In-Service Program and some other activities we've had an opportunity to participate in. And we have Nathanael Wales. You're in Connecticut, right Nathanael? You keep moving around.
Nathanael Wales:
Yes, yes. We've been in Connecticut for, oh goodness, almost eighteen, almost nineteen years when my wife got into law school here and we ended up settling here and I found a great job doing civil engineering work for the federal government.
Anil Lewis:
Oh, cool. So in the context of what we're discussing, we'll let you guys introduce yourselves if that's okay.
Melissa Riccobono:
Yeah. Let's start with ladies first. How about you, Leah? Go ahead and introduce yourself and just a little bit about who you are and maybe just, I mean you've been advocating for a long time, but maybe just a slight (Melissa and Leah laugh) introduction about the advocacy that you've done in and around the NFB and for other organizations or things that are near and dear to your heart.
Leah Campbell:
Thank you again for inviting me to be here. My name is Leah Campbell. I live in Oklahoma where I serve as the first vice president and legislative director for the Oklahoma affiliate. I'm also a ABLE National Resource Center Ambassador and a chapter advocacy coordinator for the United Spinal Association for people with mobility disabilities where I advocate for wheelchair users.
I also advocate for rare disease with the EveryLife Foundation for Rare Diseases because I was diagnosed with a rare autoimmune condition, and that is how I became blind. So just to kind of tie that together, began losing my vision when I was ten and was totally blind.
By the time I was twelve. I was misdiagnosed with a disorder and treated for it, and one of those treatments actually paralyzed me as a quadriplegic, which is how I became to advocate for wheelchair users as well.
Fast forward quite a few years, I had gotten paralyzed after college. It also took my sensation of touch, so made trying to live as a blind person quite difficult. But in 2019, I went to people with Disability Awareness Day, shared my story with legislators at the capitol. Shortly after that, I came to the NFB searching for ways to access things for a blind person, but one who could not use sensation of touch or Braille.
And I also spoke to my legislators about the inaccessibility of absentee voting in Oklahoma, which they introduced as a bill and Oklahoma House Bill 1711 was signed into law in May of '22, giving blind and low vision Oklahomans the ability to vote electronically by electronic ballot delivery system. So that was really my first huge win.
And in January of '21, I participated in my first Washington Seminar, virtually in my first rare disease week on Capitol Hill with the EveryLife Foundation and have been doing that ever since.
Melissa Riccobono:
Got it. And Nathanael, how about you?
Nathanael Wales:
So as you know, I live in Connecticut, moved here from California, was actually born in Wisconsin.
Melissa Riccobono:
Really?
Nathanael Wales:
I've been, yes. Yeah, I was born in Madison.
Melissa Riccobono:
I had no idea (laughs).
Nathanael Wales:
Yeah.
Melissa Riccobono:
It's really awesome.
Nathanael Wales:
Yeah, born in Madison, but we moved out to California when I was nine. I've been blind for my whole life. Low vision is the term I might've used for myself growing up, but always needed accommodations and the need for appropriate skills training and in school. The National Federation of the Blind, my family and I did when I was in high school through our [National Association of] Parents of Blind Children division, went to college, studied civil and environmental engineering, got some good adjustment to blindness training at one of our centers, run by members in the National Federation of the Blind, what we would now call a structured discovery training center.
And then started my career in California and then moved here to the east coast working in civil engineering and planning large infrastructure for either the state or federal government. And I've served as first vice president also of our Connecticut affiliate. Very involved with our board on legislative advocacy here in Connecticut, advocacy with our agency for the blind, which went through a little bit of uncertainty a few years ago, and I think we actually came out stronger as a result of it and have a really solid director and continue our advocacy in Washington, DC and making sure that Connecticut can pull its part for the blind and disabled.
Anil Lewis:
We were also hoping that Lindsay Kerr was going to be able to join us, but unfortunately she wasn't, but we were able to get some prerecorded information from her. So let's let Lindsay introduce herself.
Lindsay Kerr:
Yeah, so hi everyone. My name is Lindsay Kerr and I live in California. And then as it relates to advocacy, my journey really started when I started college over ten years ago when my college didn't have an audible signal in a place where they should have as there was no parallel traffic. So there was really no non-visual way to cross a particular intersection. And thanks to a petition, I was able to get that done.
My advocacy journey has continued with work with the National Federation of the Blind, whether that be attending Washington Seminar or even I was one of the 250 or so people that attended the Rideshare Rally in San Francisco in October of last year. I'm also a teacher of the visually impaired. I'm in my first year, and so this particular area holds a special place in my hair, not only as someone who is blind, but also I work with the next generation of students.
And so I see the issue that this could hold for them because it could mean that I may not be able to come into their classrooms and give them that proper instruction, but also it could mean that they're not going to get the literature that they need in order to continue their education through the different library services, etc.
And then it expands to our older populations that may be losing their vision later in life because they don't have the services that they need, especially having such a life altering circumstance happen to them.
Anil Lewis:
That's our panel. So just to be specific around what we're discussing today, we're going to be talking about the mass layoffs. These are announcements that happened in the past month, the mass layoffs with the Department of Education, the Medicare telehealth benefits expiring and the reintroduction, thank goodness (Melissa chuckles) of our Medical Device Accessibility Act.
Melissa Riccobono:
Definitely. But before we get into all that, I think I'm being told we should pause for a message. So should we pause there Anil?
Anil Lewis:
Makes sense.
Melissa Riccobono:
And then come back to it in just a minute.
Message:
Are you considering an end of year contribution? Now is the time. Thanks to a challenge grant from HumanWare during October, November and December, you can double your dollars and help blind people to choose the lives they want. Celebrate by visiting nfb.org/donate or you can call 410-659-9314, extension 2430.
Melissa Riccobono:
Alright, so here we are back and we are talking about advocacy and as Anil said, the Medicare telehealth benefits, the Department of Education layoffs and the introduction of the accessible medical devices. What do you want to talk about first Anil, what do you think? Where should we go from here?
Anil Lewis:
Well, let's see. In October, multiple news outlets let us know about the reduction in force of all our federal employees and the Office of Special Education and Rehabilitation Services (OSERS). So this is going to prevent blind children from receiving the essential services that we know are essential. That's me using the word twice to their success. It also will prevent blind adults from receiving services that are essential as well.
Melissa Riccobono:
Well, especially blind seniors who just maybe lost their sight or are losing their sight, if they can't get the training or the technology or the things that they need to live independently, they're going to go into nursing homes and that's going to cost the taxpayers many, many more dollars than if they were able to get proper training.
Anil Lewis:
It's also going to impact our blind vendors program too. So all of those services that we receive from these are going to be impacted. And the really frustrating part about it is, this is just another example of how we as an organization have advocated to make sure that these services exist so that we can become competitive participating members of society rather than beneficiaries of the public goodwill.
So the reduction in all these spaces really ends up creating more of a burden on society overall by prohibiting us from gaining the skills and the training for us to be participating members. So it's very frustrating.
Melissa Riccobono:
Yeah, it definitely is. I mean, as a parent of kids that are receiving special education in school, not just even for blindness but for some other recently very recently diagnosed disabilities, it's very scary and one who is now college age and has just applied for some rehab services and we have no idea where that's going to go or how that's going to be impacted by these things.
And probably right now, the answer, the letter that might come to our mailbox pretty soon I'm guessing is "Yes, you qualify. We don't really know what it's going to look like and when you're going to be able to get services, but here you go."
Anil Lewis:
We could talk about it all day, but we do have some people here that maybe they have some thoughts (chuckles).
Melissa Riccobono:
We do. So I mean, it'd be great to get their thoughts on the department of, should we start with the Department of Education?
Anil Lewis:
Makes sense to me.
Melissa Riccobono:
Alright. Nathanael, I think you were trying to maybe jump in. Do you have some thoughts about that?
Nathanael Wales:
I have a number of thoughts. I describe myself and the wonderful educational opportunities that I've had and the career that I have, the career that my wife as a blind woman has had, and I look at those opportunities that were built over decades, special education, access to a good education, a true free and appropriate public education, learning Braille, cane travel, getting good rehabilitation services.
All of those things are things that have contributed to us living the lives we want. And then just like you look at your kids, Melissa, I look at my son and think of his older brother who is up in heaven. They both had their own, our son has, and our older son had very different disabilities. Things that we as parents with one sort of disability have had to learn more about.
I have a little bit more empathy for parents of blind children, but it's very frustrating and it's very scary to know that the opportunities that our son who just turned five as a child with, he is on the autism spectrum, could very well be fewer.
We're going to have to fight much harder for them. His rights, his opportunities, and his dignity as a person are under real attack by this. There are several million children in this country that this impacts. Yeah, it's very scary and it calls for all of us. Every time I forward out a legislative alert, every time that I call my congressman, his office in DC and encourage my fellow members to do so, I'm fighting for the people right behind me and for my own son.
Anil Lewis:
Yeah.
Melissa Riccobono:
Absolutely. Very well said. How about you, Leah?
Leah Campbell:
Oh, well, yeah. I grew up in a very somewhat rural town in southwest Oklahoma and went through public school. I lost my vision. It wasn't until I was ten, so I had that special education and the IEP and able to stay in school, and that just enabled me to be able to graduate successfully as salutatorian and go on to college and just what it's going to take away from students and older blind Americans like you were talking about, and think about them possibly ending up in nursing homes because of not being able to live on their own and support themselves.
Melissa Riccobono:
Yeah.
Anil Lewis:
We're really curious with the basic elimination of OSERS. A couple of questions that have been posed to our members are, should education return to the states? If so, why or why not? Or how can we, including our members advocate for the reversal of the mass layoffs within OSERS?
Melissa Riccobono:
So should we maybe see what Lindsay has to say about some of these things first and then we can respond to what she has to say?
Lindsay Kerr:
I don't think it should return to the states, and here's why. We have some states that are smaller, meaning that they have less funding or we have some states that are larger that may have more funding. And so the equality wouldn't be as good as it is with it being in the federal government. Now, it's not perfect, but it's better than it could be just being in the states.
Melissa Riccobono:
Okay. That's a great point. Nathanael, do you have another point about that?
Nathanael Wales:
A couple of points if I may.
Melissa Riccobono:
Ofcourse.
Nathanael Wales:
First, Lindsay is exactly correct that returning, I don't even know what people mean when they say return education (Melissa laughs) to the state because the education of children who are blind. Look, I learned Braille in California and in Louisiana it was the same code. Lindsay teaches the same code as kids in Connecticut or Maryland are being taught. The education that blind and other disabled children need doesn't change no matter what state.
And I suppose we could even say no matter what developed country you live in, so it makes sense that the standards and the quality standards and what is quality, what is less than quality is not something that is going to be dependent upon your state government. It makes a lot more sense for that to be set at a national level because it doesn't really change based upon where you live. The other thought is oversight.
Who is going to enforce quality standards and who's going to enforce proper financial management? When I wanted to go to a structured discovery training center thirty years ago when I was getting ready to go to college out in California, the California rehab system did not want to send me to an out-of-state program. And they said, oh, "It cost 3,500 dollars a month.
That was the tuition. But we can get you that same training in state in the Bay area taught by state employees, a center that had dorms and even had a cafeteria that served three squares a day for 1,500 dollars a month versus 3,500 dollars at a nonprofit training center in north central Louisiana."
And that seemed odd to me, but actually I never even got to ask the question because they played some games with how they implemented the policy. And my parents and credit goes to both of my parents.
But this one goes especially to my dad actually called them out and said, you wrote this policy for Nathanael, and that's not right because he asked and he called them out, called their bluff, but that didn't do anything for the next person after me because now they had the policy in place and it was like trying to go to college out of state or go to a private versus a public university.
But people who looked at this objectively said, wait a minute, how does this add up? Joanne Wilson could not run the Louisiana Center for the Blind without charging 3,500 dollars a month in tuition, and yet this state center in the Bay area with state employees, with state pensions, and nothing wrong with government employees, I am one (Melissa laughs), but that's not cheap. She's like, this doesn't seem to add up.
Or maybe she thought she was doing something wrong. And so she called the Department of Education in Washington, DC and said, I don't get this. How is this happening? They're like, these numbers don't seem to add up to us either. And they called California Rehab and said, "We're not understanding this. We want to audit your books."
And rather than present their books for auditing, they changed the policy and it went away. And that's why people like Lindsay now can go if she wanted to a structured discovery training center, why many people after me were able to go, my wife, other wonderful TV eyes like Rosie and Marco Carranza recently young, who works with lined seniors and is a master can travel teacher.
And why did that happen? Because there was federal oversight to make sure that federal funds were not being controlled by the state and at the whim and goofy accounting to benefit their coworkers, but rather was being used primarily for the benefit of blind and disabled consumers.
Melissa Riccobono:
What a story.
Nathanael Wales:
Yeah.
Melissa Riccobono:
Leah, how about you? What are your thoughts?
Leah Campbell:
Well, I agree with everyone here that no, it shouldn't. I have a concern that what would happen in the interim if it does shift to the states, that all these people in the federal level already know how to manage and disperse money and things of that nature, and who's going to fall through the cracks in between and would there be any safety mechanisms? And there's a huge learning curve that would be there.
Melissa Riccobono:
Definitely. And then I mean, as Nathanael said, who are the people that say no if things are not being run correctly? And where does the money, would there even be federal money? Which then as Lindsay said, that goes to a really huge disparity because some states with lower taxes or lower income or whatever else, would have potentially much less funding and states that had more, or if you were a richer family that happened to have more means, then your child would get something where a child who has less means. And I'm not saying that doesn't still happen, but the whole purpose of education and free appropriate public education is to help that happen much less.
Anil Lewis:
And the reality is all education is so local. Really.
Melissa Riccobono:
Yes! You think (laughs)!
Anil Lewis:
To really double down on what Nathanael was saying, so many school districts, if you live in a very affluent district, then they can supplement whatever federal funding to provide a whole different level of education. So I think that the strength of having it on a national level is at least, and I hate saying this, but in so many instances, that's what's so important.
It creates a floor where no one can be provided less than what really is essential. And I think that's important. And also the consistency of the way that it's implemented across the country to at least provide that minimum standard, that free and appropriate public education is important too. If we didn't have that federal oversight, Nathanael's absolutely right. It would be just a mixed bag of education being provided to blind students across the country.
Melissa Riccobono:
Right.
Anil Lewis:
And services to blind adults.
Melissa Riccobono:
So we've had a great discussion so far, and in the NFB, we're always solution focused as much as we can, right? There's always hope or we always try to be hopeful. So what can our members do? How can we advocate? Leah, do you have thoughts about that?
Leah Campbell:
Sure. I've got a couple of things I think on that. One thing for the members that in this instance, since the Health, Education, Labor, and Pensions committee, they're looking at doing the reduction, is so important and they hold the power that we can reach out to those senators that are on there. Oklahoma Senator is one of them.
We can also contact our representatives in our local districts in Washington when they're there, and we can always call the offices. We can send emails, sometimes when you don't feel like you're not being heard and you can always schedule a meeting with them and explain things to them on what you experience.
Melissa Riccobono:
And it is the story. Stories are very powerful. Nathanael, how about you?
Nathanael Wales:
I completely agree with Leah. Our US senators are in the minority party here in Connecticut, so maybe our advocacy with them will look a little different, but still, our voices matter. Wherever you live. Our senators and representatives need to know how important this is and that this is a priority especially, and we deal with this in the NFB, there are so many problems and challenges out there. We've got to prioritize.
We've got to make sure that we keep all of us, no matter where we live, whether we're red or blue or purple or whatever, we keep advocating. We keep calling, we keep sending emails, we keep making appointments and telling our stories and letting our friends in Congress know that we want them to do this and that we will have their back and we have information and stories that they need to hear.
I'll say, I called my congressman's office in DC the other day about this, trying to schedule a meeting, and they told me how to do it, but they also asked for my information and she must have pulled me up in the office's database because she's like, "Mmmhmm, yep, I see your letter to the aid." Congressman Himes completely supports this. David sent me a reply by email with a letter that he had signed on to.
Your congressman, no matter which side of the aisle they sit on, a good office will track this stuff and you will have a track record with them as an advocate and keep that up and keep encouraging your fellow members, your fellow chapter members, your fellow at large members, people at your state convention, keep writing these letters, keep putting the pressure on, and if it can be helpful, go to DC.
Melissa Riccobono:
Absolutely. What does Lindsay have to say about all this topic?
Lindsay Kerr:
I think the first way they can do it as I have done, and I think this is how I ended up on this particular podcast episode, is just continually emailing their congressional members from the releases that come out through our different listervs through the national office, but also letting their friends and family know how these things are impacting them so that your friends and family can help in that advocacy.
Because if your friends and family don't understand how you're being impacted, that change can't happen. And more congressional members and legislators don't understand how we're being impacted, especially with us being such a small population in the grand scheme of such a larger population that where decided of communities, they're the minority and we're just the ones being impacted.
Anil Lewis:
Yeah, Lindsay makes some really good points there. I think as members of the Federation, that's our biggest strength, I often tell people the reason we're so successful as membership organization is because our members are so involved and engaged, and we are really quick to make sure we tell society how we feel about these issues, whether it be our friends and family or members of Congress, we really take our responsibility to be proactive in correcting any social ills that we identify. So I think that that point is very well taken.
Melissa Riccobono:
Definitely. So now we come to Medicare, and as of October 1, the telehealt benefits have expired. And this would mean that or does mean that beneficiaries will be required to travel to a medical facility in order to receive regular diagnostic care that could have been administered virtually.
Lindsay Kerr:
I think telehealth should continue. It's opened more doors for many who didn't get access to medical care prior to the pandemic. And I mean, I don't know if you've seen this through social media. I recently discovered it and I thought it was really interesting. Medical care for telehealth isn't even just your typical seeing the doctor and that sort of thing, but even dentistry has gone to telehealth where there are mobile dentists that will come into your home or even come into nursing homes to get that proper care. And so because of the pandemic, we've opened more doors to medical care that we didn't have prior to. And so having telehealth has opened the doors that we didn't expect to have it open.
Melissa Riccobono:
Nathanael, do you have anything else to add?
Nathanael Wales:
It's opened up new doors. It's opened them up not only for patients, especially patients for whom it is very hard or expensive to travel, even if they're in a small state. Transportation is always a challenge and sometimes it's necessary, but there's a lot of times that it's not.
But it's not only good for patients, but it's also good, honestly for doctors and other medical professionals who want to be able to provide care without having to sit in an office and be exposed to germs (Melissa laughs) and pathogens and things like that. This is good for the providers as well, but it's particularly important for blind and disabled patients.
Melissa Riccobono:
I agree. And I would say I didn't think I had anything else to add, but I do because I have chronic fatigue syndrome and I was finally able to find true help through the Cleveland Clinic, and the first time I had to go to the Cleveland Clinic, that was three years ago. From that time forward, I've been able to do telehealth. Now I'm very lucky. I have private insurance, and so I'm able to use that telehealth, but otherwise, I would either need to decide that I'm on a good trajectory.
I don't really need to see my chronic fatigue doctor anymore, or I'd have to be hopping on a plane for a while. It was three months, now it's six months, but still an actual trip to Cleveland? I don't think I would want to do that when right now I can just get dressed one morning, Zoom with my doctor for about fifteen, twenty minutes, make sure everything's going well, ask any questions that I have, and then be cleared for another six months or have medications adjusted or whatever else. So it's obviously very, very important.
Anil Lewis:
At the tail in what you were saying, my whole piece around this is really the fact that it's not just around disability. I think telehealth just makes sense. For me, the biggest thing is the logistical concern right now, in order to actually go see a doctor in their offices, there's at a minimum sometimes a four month wait just to get there.
And the thing that really frustrated me before telehealth was you get up, you go to the doctor, you'd have to wait in the waiting room for like an hour (Melissa chuckles), then you go see them for 15 minutes...
Melissa Riccobono:
Yup!
And then you're back again. So I think that telehealth just makes sense, period. So I don't know why we would want to stop this since it's so progressive. The other piece is now with everything that's going on, really, I think it started in COVID especially. I know me seeking professional help with some counseling and dealing with the emotional stress and some other things.
I mean, the convenience of being able to do that in a telehealth environment was just, I mean, that was the deal breaker for me. If I would've had to do anything more than just set up that opportunity to really speak with and engage with the counselor, I don't know whether I would've would've done that or not.
And I think we are going to be doing a podcast on mental health, and that's just a key component for me.
So I mean, the good news about this one is that there is a bill and it has been introduced, and it does have bipartisan support to make sure that these benefits won't just stop. And I believe that it's to make these benefits permanent.
So I'm guessing as far as advocacy goes, making sure that people know about that bill and that our members are on top of that and talk to their legislators about that and just kind of follow it as it makes its journey from being just a bill, only a bill sitting on Capitol Hill to becoming hopefully a law.
Alright, speaking of laws and bills, the Medical Device Non-Visual Accessibility Act has been reintroduced in the US House of Representatives. Yay! Anil, do you want to talk a little bit about what this legislation will do?
Anil Lewis:
Sure. The Medical Device Non-Visual Accessibility Act, it's a piece of legislation that ensures medical devices are manufactured with non-visual access. And this is really key. This is work that we've been doing with some of the manufacturers, but we recognize that without legislation, we're probably not going to make as much of an impact as possible because we can make the argument about the return on investment and that kind of thing.
But still companies, they research and develop in the same rhythm. So unless we're able to get them to understand the business efficacy of it, then sometimes the regulation is going to be required in order for them to make that particular move. And it's very interesting that a lot of the technology today is being built with a lot of digital interfaces already.
So if they at least put some attention toward accessibility, it'd be a less harder thing to meet than I think they expect. So we're hoping that this piece of legislation not only hopes to educate the manufacturers, but also for those who refuse to be educated will require them to do what we know is the right thing to do.
Melissa Riccobono:
Yeah, absolutely. I'm a CPAP user and I just got a brand new little tiny travel sized CPAP, and it was pretty cool because I could actually go in there and change some settings myself. Of course, I talked to my doctor to figure out what settings I needed to change, and that was nice, except that the app, that part of the app, everything else was fine. But that particular part of the app, I actually had to have my 18-year-old help me with because it was not accessible.
And if they ever change their apps again, right now, I'm able to see my events per hour, see how many hours I slept and used my machine, see how my mask was sealed throughout the night. All these are really, really important. But if they ever change the app, it could just not exist anymore, that I wouldn't be able to have access to any of that data. And of course, somebody that doesn't have a smartphone or somebody that's not very technology savvy, they're not going to be able to get that data in the same way that I'm able to access it and use it and help it for making decisions for my health and talking to my doctor when things don't seem right, or there's numbers that just aren't making sense to me. So Nathanael, do you have anything to add about this bill?
Nathanael Wales:
This is one, as a parent, we're working with baby monitors when our kids were little, thinking about parents who need accessibility because their child has a different disability or a rare disease, and look, this is something that may not affect me today, but diabetes runs in my family.
I'm fortunately in very good health, but I am mindful that having access to blood glucose monitoring and everything that I see my dad do, my dad is a type two diabetic. That is something that very well may be something that I'm going to need at some point for myself, for my wife, and is something that certainly has been for my kids as a parent.
Melissa Riccobono:
Leah, how about you?
Leah Campbell:
The only things, I mean, I can see where this can really work with people doing home dialysis, even subcutaneous IVIG in my community. Just doing some of those things at home rather than having to go to infusion centers just takes a lot off of people. And then just the fact, I mean, if we do get telehealth back, just being able to report your weight, your blood pressure, and your temperature accurately, and being able to monitor those things is so important to just maintaining good health.
And so I just think it would also be great because as wheelchairs are considered as medical devices, for me being blind and a wheelchair user, I think it would be great if I could have a wheelchair that would actually have auditory output and I knew what things I was adjusting and things of that nature.
Melissa Riccobono:
Or if it's an electric wheelchair, I bet your battery (Melissa and Leah chuckle), knowing what the level is, I'm guessing would be really helpful. I never even thought about that.
Leah Campbell:
How far you can go and get back.
Melissa Riccobono:
Right. Yeah, I never even thought about that. But yeah, that makes a ton of sense. Absolutely.
Anil Lewis:
So then I'd like to add really interesting from transitioning from the previous topic, telehealth is greatly complimented with the accessible medical devices. Leah talked about being able to do blood pressure and weight, and I have these products, and they weren't necessarily designed to be accessible, but my scale, my glucose monitor, my blood pressure, they all work through an app on my phone and that information is accessible to me. And not only that, the apps themselves, well, most of them kind of communicate through the iPhone health app, which then I can actually allow my doctor to have access to.
So it makes that process even more seamless. So normally when you go into physical space to see the doctor, they put you on the scale, they weigh you, and they take you in the back to take care blood pressure.
For me, as a diabetic, they may prick my finger to take a glucose, and I don't need to be physically present for them to do that. I have the tools here, as long as they're accessible and then I can get that information, then I can also consciously share that information with my doctor. This again is just a win-win.
Melissa Riccobono:
It is, and knowledge is power. I mean, say what you want about the scale. And there's a lot of people that will say, don't weigh yourself every day and this and that, and that makes sense. But I do think that in general, knowing what your weight is from week to week or even every couple of weeks...
Anil Lewis:
Changes your behavior.
Melissa Riccobono:
That's powerful. It does. It does. Or at least for me, I'm a little higher than I want to be, but I'm holding very steady (Melissa chuckles). So at least I was like, okay, I maybe a little bit higher, but at least I'm not gaining more. If I really start gaining more, then I really, really need to kick it up another notch. But right now, even if I'm not super happy where I am, at least I'm really stable.
And in general, I'm doing pretty well. And so maybe it's not as big a deal. But anyway, I just think that knowledge is so powerful and that's why we need this type of bill to pass. So any final thoughts, Anil on advocacy or any of these topics or anything else that you want to share with our listeners and our members?
Anil Lewis:
I'd like to see if our guests have any final comments because I always have final comments.
Melissa Riccobono:
Oh, okay. Alright. Who do you want to start with this time?
Anil Lewis:
I have to start with my buddy Leah (Leah laughs).
Melissa Riccobono:
Okay. Start with your buddy Leah (Melissa laughs).
Anil Lewis:
Yeah, because I'm a southern gentleman. Ladies first. All that chivalry is not dead. It's just (Melissa, Anil and Leha laugh)...
Melissa Riccobono:
Is it dormant once in a while?
Anil Lewis:
No, it is not even dormant. It's on life support, but we are going to revive it.
Melissa Riccobono:
Oh dear.
Anil Lewis:
It's going to be fine.
Melissa Riccobono:
Okay, good. You're going to revive it all by yourself?
Anil Lewis:
I'm leading the charge and I'm sure Nathanael's going to help me.
Melissa Riccobono:
Okay. Excellent. Go ahead Leah (chuckles).
Leah Campbell:
Alright, well, I just, I think when it comes to advocacy, I would just really like to encourage people to just be willing to share your story. You don't have to know the particulars of the legislation or the bills. Just being there to be vulnerable and share your experiences and how things have impacted you is really powerful and what the legislators want and need to hear.
They're in Washington, they don't know how it affects us, especially as blind people or paralyzed people or anything in a small minority because they don't experience it. So how are they going to do it if we don't tell them? And if for people are getting nervous and things with going into speaking, just remember that you are the expert on your story and that's it. They don't know. And whatever you tell them, they're there to listen.
Anil Lewis:
Well said. How about you, Nathanael?
Nathanael Wales:
In addition to everything that Leah said, which was absolutely spot on. Look, I'm a numbers guy, right? I'm an engineer. I look at what the standards are and how much something might cost. And somebody might say, "Well, a standard is too expensive." Whether it's the standard, a national standard for teaching Braille to our kids or a national standard for accessibility of medical devices or a standard of what we're going to pay for with telehealth benefits.
But ultimately having all of those standards in place and having oversight over them is the most effective way. No matter what space you're in to help people live the lives that they want. Having those standards sets expectations for cost and make sure that money is spent wisely. We do need money spent, but wisely and with good oversight.
Anil Lewis:
Agreed. So let's hear final thoughts from Lindsay.
Lindsay Kerr:
I think it's important that we get the younger generation helping in that advocacy journey so that they understand that although they may not be of voting age, they still have the ability to have that voice. And I think it really will help build their skill sets as they exit the high school and go into the either employment space or even college space so that they have the tools they need to advocate to their employers for accessibility or even to their college disability service offices to advocate for accessibility.
Melissa Riccobono:
That's a really good thought. One of my earliest memories actually is sitting on my mom's lap as she called Jim Sensenrebnner, who was a senator or a representative, I don't think he was a senator, representative in Wisconsin, talking about why the Free Matter for the Blind mailing should continue and how if it didn't, it would really impact my sister in her schooling and having to pay for the books that she needed and also impact me as I was growing up. And so yes, younger people definitely do need to see that and they are watching. So that's a really good point.
Anil Lewis:
And I echo that because I think that we get to a place where we become victims of our own success and the young people have to recognize that we had to fight hard to get here.
Melissa Riccobono:
Yes!
Anil Lewis:
And they're going to have to continue to fight hard to keep it. But what Leah was saying early on also is very important with respect to recognizing that we have expertise through our lived experience that should be valued. Overall, these topics is so interesting to me that as we as an organization continue to fight to be fully participating, contributing members of society, these particular decisions are trying to relegate us back to existence of beneficiaries of the public goodwill.
So why would we want to spend less money to end up costing the government more money? It's just counterintuitive to me, the Office of Special Education and Rehabilitation Services just to make sure that people with disabilities can access the same services that are provided to everyone else in the ways that we need them.
So in the regular education environment, students get print books. We want to make sure that in that regular education environment, blind students get Braille books. It is really fairly common sense. But I think that what happens is not enough of the policymakers really have real engagement with individuals with our lived experience. So again, that's why our advocacy is so important.
Our advocacy is not going stomping, protesting. When it comes to that, absolutely we have teeth to do that. But our advocacy is about relationship building. And I love the way that our members really develop relationships with policymakers so that they gain a degree of respect that those policymakers can recognize that the services that we need are going to be cost effective for society. And even more so as we advocate for accessibility of medical equipment and telehealth, those are services that benefit beyond just people with disabilities.
Those are services that benefit everybody. Everybody can benefit from more accessible devices. Everyone can benefit from easier access to telehealth services. Again, that's a demonstration of our desire to be proactive, contributing members of society, not just beneficiaries of the public goodwill.
Melissa Riccobono:
Yeah, so true. And I mean that is, anything that walks you through how to set it up or gives you that feedback, I think more and more as I watch my own mom aging and I see things that maybe she struggles with and see how it helps her, if there's actual instructions that she's able to listen to and she can see, so she can look at it at the same time. But I think that's really, really important. And so I love that idea and I love that we're really trying to make it better for everybody.
Anil Lewis:
And we'll provide some links to some information in our show notes. And we are looking to hear your stories, do your lived experience. If we can help amplify or echo what you're out there communicating to others, let us do that collaboratively and work together because it's through that collective action of the National Federation of the Blind that we can assure that blind people can live the lives we want and that life we want is again to be contributing members of society. So until next time, remember, you can live the life that 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.