Podcasts about disability services

Each episode on Unstoppable Mindset I ask all of you and my guests to feel free to introduce me to others who would be good guests on our podcast. Our guest this time, Erin Edgar, is a guest introduced to me by a past podcast guest, Rob Wentz. Rob told me that Erin is inspirational and would be interesting and that she would have a lot to offer you, our audience. Rob was right on all counts. Erin Edgar was born blind. Her parents adopted an attitude that would raise their daughter with a positive attitude about herself. She was encouraged and when barriers were put in her way as a youth, her parents helped her fight to be able to participate and thrive. For a time, she attended the Indiana School for the Blind. Her family moved to Georgia where Erin attended high school. After high school, Erin wanted to go to college where she felt there would be a supportive program that would welcome her on campus. She attended the University of North Carolina at Chapple Hill. After graduating she decided to continue at UNC where she wanted to study law. The same program that gave her so much assistance during her undergraduate days was not able to provide the same services to Erin the graduate student. Even so, Erin had learned how to live, survive and obtain what she needed to go through the law program. After she received her law degree Erin began to do what she always wanted to do: She wanted to use the law to help people. So, she worked in programs such as Legal Aid in North Carolina and she also spent time as a mediator. She will describe all that for us. Like a number of people, when the pandemic began, she decided to pivot and start her own law firm. She focuses on estate planning. We have a good discussion about topics such as the differences between a will and a living trust. Erin offers many relevant and poignant thoughts and words of advice we all can find helpful. Erin is unstoppable by any standard as you will see. About the Guest: Erin Edgar, Esq., is a caring, heart-centered attorney, inspirational speaker and vocal artist. She loves helping clients: -- Plan for the future of their lives and businesses, ensuring that they have the support they need and helping them find ways to provide for their loved ones upon death. --Ensure that the leave a legacy of love and reflect client values -- Find creative ways that allow them to impact the world with a lasting legacy. She is passionate about connecting with clients on a heart level. She loves witnessing her clients as she guides them to transform their intentions for their loved ones into a lasting legacy through the estate planning process. Erin speaks about ways to meld proven legal tools, strategies, and customization with the creative process to design legal solutions that give people peace of mind, clarity, and the assurance that their loved ones will be taken care of, and the world will be left a better place Ways to connect with Erin: Facebook: https://facebook.com/erin-edgar-legal LinkedIn: https://linkedin.com/in/erinedgar About the Host: Michael Hingson is a New York Times best-selling author, international lecturer, and Chief Vision Officer for accessiBe. Michael, blind since birth, survived the 9/11 attacks with the help of his guide dog Roselle. This story is the subject of his best-selling book, Thunder Dog. Michael gives over 100 presentations around the world each year speaking to influential groups such as Exxon Mobile, AT&T, Federal Express, Scripps College, Rutgers University, Children's Hospital, and the American Red Cross just to name a few. He is Ambassador for the National Braille Literacy Campaign for the National Federation of the Blind and also serves as Ambassador for the American Humane Association's 2012 Hero Dog Awards. https://michaelhingson.com https://www.facebook.com/michael.hingson.author.speaker/ https://twitter.com/mhingson https://www.youtube.com/user/mhingson https://www.linkedin.com/in/michaelhingson/ accessiBe Links https://accessibe.com/ https://www.youtube.com/c/accessiBe https://www.linkedin.com/company/accessibe/mycompany/ https://www.facebook.com/accessibe/ Thanks for listening! Thanks so much for listening to our podcast! If you enjoyed this episode and think that others could benefit from listening, please share it using the social media buttons on this page. Do you have some feedback or questions about this episode? Leave a comment in the section below! Subscribe to the podcast If you would like to get automatic updates of new podcast episodes, you can subscribe to the podcast on Apple Podcasts or Stitcher. You can subscribe in your favorite podcast app. You can also support our podcast through our tip jar https://tips.pinecast.com/jar/unstoppable-mindset . Leave us an Apple Podcasts review Ratings and reviews from our listeners are extremely valuable to us and greatly appreciated. They help our podcast rank higher on Apple Podcasts, which exposes our show to more awesome listeners like you. If you have a minute, please leave an honest review on Apple Podcasts. Transcription Notes: Michael Hingson ** 00:00 Access Cast and accessiBe Initiative presents Unstoppable Mindset. The podcast where inclusion, diversity and the unexpected meet. Hi, I'm Michael Hingson, Chief Vision Officer for accessiBe and the author of the number one New York Times bestselling book, Thunder dog, the story of a blind man, his guide dog and the triumph of trust. Thanks for joining me on my podcast as we explore our own blinding fears of inclusion unacceptance and our resistance to change. We will discover the idea that no matter the situation, or the people we encounter, our own fears, and prejudices often are our strongest barriers to moving forward. The unstoppable mindset podcast is sponsored by accessiBe, that's a c c e s s i capital B e. Visit www.accessibe.com to learn how you can make your website accessible for persons with disabilities. And to help make the internet fully inclusive by the year 2025. Glad you dropped by we're happy to meet you and to have you here with us.   Michael Hingson ** 01:21 Hi everyone, and welcome to another edition of unstoppable mindset. We're glad that you're here with us, wherever you may be. Hope the day is going well, and we have Erin Edgar on our episode today. Edgar is a very interesting person in a lot of ways. She's a caring, heart centered attorney. She is also an inspirational speaker and a vocal artist. I'm not sure whether vocal artistry comes into play when she's in the courtroom, but we won't worry about that too much. I assume that you don't sing to your judges when you're trying to deal with something. But anyway, I'll let her answer that. I'm just trying to cause trouble, but Erin again. We're really glad you're with us. We really appreciate you being here, and I know you do a lot with estate planning and other kinds of things that'll be fun to talk about. So welcome to unstoppable mindset.   Erin Edgar ** 02:14 Thank you, Michael. It's great to be here, and I haven't sung in a courtroom or a courthouse yet, but I wouldn't rule it out.   Michael Hingson ** 02:23 I have someone who I know who also has a guide dog and his diet. His guide dog, it's been a while since I've seen him, but his guide dog tended to be very vocal, especially at unexpected times, and he said that occasionally happened in the courtroom, which really busted up the place. Oh, dear.   Erin Edgar ** 02:45 I imagine that would draw some smiles, hopefully, smiles.   Michael Hingson ** 02:48 Well, they were, yeah, do you, do you appear in court much?   Erin Edgar ** 02:53 Um, no, the type of law that I practice, I'm usually, I don't think I've ever appeared in court after I've written people's wills, but I have done previous things where I was in court mediating disputes, which is a kind of a separate thing that I used to do, so I've been in court just not recently. Yeah.   Michael Hingson ** 03:17 Well, that's understandable. Well, let's start a little bit with the early Erin and growing up and all that sort of stuff. Tell us about that? Sure.   Erin Edgar ** 03:26 So I was born in cold, gray Indiana, and, yeah, chilly in the wintertime, and I started out I was blind from birth, so my parents thought it would be a good idea to send me to the school for the blind for a while. And back when I was born, um, teen years ago, they did not mainstream visually impaired and disabled students in that state, so you went where you could, and I was at the blind school for until I reached third grade, and then we moved to Georgia, and I've been in the south ever since I live in North Carolina now, and I started going to public schools in fourth grade, and continued on that route all the way up through high school.   Michael Hingson ** 04:21 Oh, okay. And so then, what did you do?   Erin Edgar ** 04:29 So after, after that, I, you know, I was one of those high school students. I really wanted to get out of dodge and leave my high school behind. I went visiting a couple of colleges in Georgia, and I said to my parents, I said, I really don't like this. It's like going to high school again. Literally, I was meeting people I had been in high school with, and I decided, and was very grateful that my parents. Were able to rig it some way so that I could go to an out of state school. And I went to UNC Chapel Hill here in North Carolina, Tar Heels all the way. And I was there for undergrad. And then I got into law school there as well, which I was very excited about, because I didn't have to go anywhere, and graduated from law school again a while ago in the early 2000s   Michael Hingson ** 05:31 Okay, and so then you went straight into law from that.   Erin Edgar ** 05:37 I didn't I did some other things before I actually went into law itself. I worked with some local advocacy organizations, and I also mediated, as I said earlier, I did mediations with the county court, helping mediate criminal disputes. And we're talking about like things with you get in a dispute with your neighbor and you yell at each other, those kind of People's Court type things. They were fun and interesting. And then I did go into law. After that, I started working with Legal Aid of North Carolina, which is a an organization that helps people in poverty who cannot afford a lawyer to go and have have their options communicated to them and some help given to them regarding their public benefits or certain other, you know, public things that we could help with we weren't able to help with any personal injury, or, you know, any of the fun stuff you see on TV. So and then, when the pandemic hit, I started my own law practice and completely changed gears and went into writing estate plans and wills for a living.   Michael Hingson ** 07:07 Do you think that your time doing mediation work and so on taught you a lot about humanity and human nature and people?   Erin Edgar ** 07:16 It did. I bet it did. It was invaluable, actually, in that area taught me a lot about, I don't know necessarily, about human nature. However, it did teach me a lot about how to talk to people who were on different pages. You know, they had, perhaps, values and principles that weren't quite the same, where they had a different way of looking at the same exact situation, and how to bring those those people together and allow them to connect on a deeper level, rather than the argument we're able to get them to agree to kind of move forward from that, so nobody has to be found guilty, right? And you know a judge doesn't have and you don't have to drag a criminal conviction around with you. I think the most rewarding cases that I had, by far were the education cases. Because I don't know if anyone knows this, but in most states, in the United States, if you don't send your kids to school, you are guilty of a crime. It's called truancy, and you can be arrested. Well, the county that I live in was very forward thinking, and the school system and the court said, that's kind of dumb. We don't want to arrest parents if their kids aren't going to school, there's something behind it. You know, there the school is not providing what the child needs. The child's acting out for some reason, and we need to get to the bottom of it. So what they did was they set up a process whereby we come in as neutral observers. We did not work for the court. We were part of a separate organization, and have a school social worker there or counselor, and also have a parent there, and they could talk through the issues. And in a lot of cases, if the children were old enough, they were teenagers, they were there, and they could talk about it from their perspective. And truly amazing things came out of those situations. We could just we would discover that the children had a behavioral issue or even a disability that had not been recognized, and were able to come up with plans to address that with you know, or the school was with our help,   Michael Hingson ** 09:42 going back a little bit, how did your parents deal with the fact that you were blind? I gather it was a fairly positive experience   Erin Edgar ** 09:50 for me. It was positive. I was so fortunate, and I'm still so grateful to this day for having parents who you. I were very forward thinking, and advocated for me to have and do whatever, not whatever I wanted, because I was far from spoiled, but, you know, whatever, yeah, yeah, you know. But whatever, however I wanted to be successful, they advocated for me. And so my mother actually told me, you know, when I was born, they went through all the parent things like, oh, gosh, what did we do wrong? You know, why is God punishing us? You know, all that. And they, very early on, found support groups for, you know, parents with children with either blindness or disabilities of some sort, and that was a great source of help to them. And as I grew up, they made every effort to ensure that I had people who could teach me, if they couldn't, you know, how to interact with other children. I think, for a while when I was very little, and I actually kind of remember this, they hired an occupational therapist to come and teach me how to play with kids, because not only was I blind, but I was an only child, so I didn't have brothers and sisters to interact with, and that whole play thing was kind of a mystery to me, and I remember it sort of vaguely, but that's just A demonstration that they wanted me to have the best life possible and to be fully integrated into the sighted world as much as possible. So when I was at the blind school, and I was in this residential environment, and there was an added bonus that my parents didn't really weren't happy in their jobs either, and they weren't happy with the education I was getting, that they decided, well, we're just going to pick up and move and that was, quite frankly, as I look back on it now, a huge risk for them. And they did it, you know, 50% for me and 50% for them, maybe even 6040, but as I look back on it now, it's another demonstration of how supportive they were, and all the way through my school age years, were very active in ensuring that I had everything that I needed and that I had the support that I needed.   Michael Hingson ** 12:19 That's cool. How did it go when you went to college at UNC?   Erin Edgar ** 12:25 Yeah, that's an interesting question, a very good question.   Michael Hingson ** 12:29 You didn't play basketball, I assume? Oh no, I figured you had other things to do.   Erin Edgar ** 12:33 Yeah, I had other stuff to do. I sang in the choir and sang with the medieval chorus group, and, you know, all this other, like, musical geek, geeky stuff. But, or, and when we were looking for colleges and universities, one of the criteria was they had to have a solid kind of, like disability, slash visually impaired center, or, you know, support staff that would help in, you know, allow people with disabilities to go through the university. So at UNC Chapel Hill, the they had as part of their student affairs department Disability Services, and it just so happened that they were very aware of accommodations that blind people needed. I wasn't the first blind student to go through undergrad there. That's not law school, that's undergrad. And so you know, how much was it? Time and a half on on tests if I was doing them on the computer, double time if I was doing them in Braille. A lot of the tests were in Braille because they had the technology to do it. And also the gentleman who ran the Disability Services Department, I think, knew Braille, if I'm not mistaken, and could transcribe if necessary. But I was at the stage at that point where I was typing most of my exams anyway, and didn't need much that was in Braille, because I had books either electronically or they had a network of folks in the community that would volunteer to read if there was not, you know, available textbooks from RFD, and what is it, RFP and D? Now was at the time, yeah, now Learning Ally, there wasn't a Bookshare at that time, so we couldn't use Bookshare, but if there weren't textbooks available, they would have people in the community who would read them for them, and they would get paid a little bit. Now, when I went to law school, it was a totally different ball game, because I was the first law student who was blind, that UNC Chapel Hill had had, and it was a different school within the school, so that student affairs department was not part of law school anymore, and we had quite a time the first semester getting my book. Works in a format that I could read them in. They did eventually, kind of broker a deal, if you will, with the publishers who were either Thompson Reuters or Westlaw at the time to get electronic versions. They were floppy disks. This is how old I am. Floppy disks. They were in this weird format. I think it was word perfect or something. Usually it was, and they   Michael Hingson ** 15:27 didn't really have a lot of them new or no, they didn't know now, newer publishing system,   Erin Edgar ** 15:32 yeah, there wasn't PDF even, I don't think, at the time. And the agreement was I could get those, and I actually had to buy the print textbooks as well. So I have this whole bookcase of law books that are virgin, unopened, almost. And they are, you know, some of them almost 25 years old, never been opened and of no use to anyone. But I have them, and they look nice sitting down there in that bookshelf antiques books. They're antiques. So the first year was a little rough, because for a while I didn't have books, and we were able to make arrangements so that I could kind of make up some classes on a later year and switch things around a little bit. And it ended up all working out really well once we got started.   Michael Hingson ** 16:16 Yeah, I remember when I was going through getting my bachelor's and master's in physics, I needed the books in braille because, well, it's the only way to be able to really deal with the subject. You can't do it nearly as well from recordings, although now there's a little bit better capability through recording, because we have the DayZ format and so on. But still, it's not the same as reading it in Braille and for mathematics and physics and so on. I think that the only way to really do it is in Braille. And we had challenges because professors didn't want to decide what books to use until the last minute, because then, oh, a new book might be coming out and we want to get the latest book, and that didn't work for me, right? Because I had a network that I, in part, I developed with the Department of Rehabilitation out here, helped our office for disabled students didn't really have the resources to know it. They were very supportive. They just didn't really deal with it. But the bottom line is that we had to develop, I had to develop the network of transcribers, but they needed three to six months to do the books, at least three months and and sometimes I would get them one or two volumes at a time, and they barely kept ahead of the class. But, you know, it worked, but professors resisted it. And my the person who ran the Office for Students with Disabilities, said, Look, you have to work on these things, but if you're not getting cooperation from professors, and you come and tell me, and I will use the power of this office to get you what you need, there's another thing you might consider doing, she said. And I said, What's that? And Jan said, Go meet the chancellor. Make friends, yeah, friends in high places. And so I did. And Dan, oh, there you go. Became pretty good friends over the years, which was pretty cool,   Erin Edgar ** 18:15 you know, it was weird because we didn't, I didn't have that problem with the professors. They were, you know, I had a couple of old codgers, but they weren't really worried about the books. They were fine with me having the books, but it was the publishers. The publishers were irritated that that I needed them, and, you know, in an alternative format. And I didn't really, I was not. I was one of those people that if someone said they were going to do something for me, I kind of let people do it. And at the time, I was really not an advocate, advocator for myself, at that time, a very good self advocate. And so I kind of let the school interface with that. I think it would have been really interesting, if I look back on it, for me to have taken a hand in that. And I wonder what would have happened well, and at this point, you know, it's neither here nor there, but that's really fascinating. Making Friends with the chancellor, sometimes you have to do stuff like that   Michael Hingson ** 19:15 well. And the idea was really to get to know Him. And what there was, well, obviously other motivations, like, if we needed to go to a higher court to get help, we could go to the chancellor. I never had to do that, but, but the reason for meeting him and getting to know him was really just to do it and to have fun doing it. So we did,   Erin Edgar ** 19:36 yeah, and I kind of had a comparable experience. I met the Dean of the Law School for that very reason. And he said, you know, if you've got trouble, come to me, my parents got involved a little bit. And we all, you know, met together and maybe even separately at some points just to make sure that I had everything that I needed at various times. Mm. Yeah, and I made friends with the some of the assistant deans at the law school, in particular because of the situation, and one of whom was the Dean of the Law School Student Affairs, who was helping me to get what I needed. And for a while, when I was in law school and beyond. He was like, We lent books to each other. It was very funny. We found out we had the same reading tastes beyond law books. It wasn't, you know, legal at all, but we were like, trading books and things. So a lot of really good relationships came out of that.   Michael Hingson ** 20:37 And I think that's extremely important to to do. And I think that's one of the things that that offices for students with disabilities that tend to want to do everything for you. I think that's one of the things that it's a problem with those offices, because if you don't learn to do them, and if you don't learn to do them in college, how are you going to be able to be able to really act independently and as an advocate after college, so you have to learn that stuff   Erin Edgar ** 21:05 Absolutely. That's a very good point.   Michael Hingson ** 21:09 So I, I think it was extremely important to do it, and we did, and had a lot of fun doing it. So it was, was good. What are some of the biggest misconceptions you think that people had about you as a blind child growing up?   Erin Edgar ** 21:25 Oh yeah, that's a great question. I think that one of the biggest misconceptions that people had about me, especially when I was younger, is that I would know I would be sort of relegated to staying at home with parents all of my life, or being a stay at home parent and not able to be kind of professionally employed and earning, you know, earning a living wage. Now, I have my own business, and that's where most of my money goes at the same at this point. So, you know, earning a living wage might be up in the air at the moment. Ha, ha. But the the one thing I think that the biggest misconception that people had, and this is even like teachers at the blind school, it was very rare for blind children of my age to grow up and be, you know, professionals in, I don't want to say high places, but like people able to support themselves without a government benefit backing them up. And it was kind of always assumed that we would be in that category, that we would be less able than our sighted peers to do that. And so that was a huge misconception, even you know, in the school that I was attending. I think that was the, really the main one and one misconception that I had then and still have today, is that if I'm blind, I can't speak for myself. This still happens today. For instance, if I'm if I want, if I'm going somewhere and I just happen to be with someone sighted, they will talk whoever I'm, wherever I'm at, they will talk to the sighted person, right? They won't talk to you. They won't talk to me. And so, for instance, simple example, if I'm somewhere with my husband, and we happen to be walking together and we go somewhere that I need to go, they will talk to him because he's guiding me, and they won't talk. And he's like, don't talk to me. I have no idea, you know, talk to her, and part of that is I'm half a step behind him. People naturally gravitate to the people that are leading. However, I noticed, even when I was a young adult, and I would go, you know, to the doctor, and I would be with my my parents, like, maybe I'm visiting them, and I need to go to the doctor, they would talk to them and not me, yeah, which is kind of sad. And I think it happens a lot, a lot more than people realize.   Michael Hingson ** 24:10 Yeah, it does. And one of my favorite stories is, is this, I got married in 1982 and my wife has always been, or had always been. She passed away in 2022 but she was always in a wheelchair. And we went to a restaurant one Saturday for breakfast. We were standing at the counter waiting to be seated, and the hostess was behind the counter, and nothing was happening. And finally, Karen said to me, she doesn't know who to talk to, you know? Because Karen, of course, is, is in a wheelchair, so actually, she's clearly shorter than this, this person behind the counter, and then there's me and and, of course, I'm not making eye contact, and so Karen just said she doesn't know who to talk to. I said, you know? All she's gotta do is ask us where we would like to sit or if we'd like to have breakfast, and we can make it work. Well, she she got the message, and she did, and the rest of the the day went fine, but that was really kind of funny, that we had two of us, and she just didn't know how to deal with either of us, which was kind of cute. Mm, hmm. Well, you know, it brings up another question. You use the term earlier, visually impaired. There's been a lot of effort over the years. A lot of the professionals, if you will, created this whole terminology of visually impaired, and they say, well, you're blind or you're visually impaired. And visually impaired means you're not totally blind, but, but you're still visually impaired. And finally, blind people, I think, are starting to realize what people who are deaf learned a long time ago, and that is that if you take take a deaf person and you refer to them as hearing impaired, there's no telling what they might do to you, because they recognize that impaired is not true and they shouldn't be equated with people who have all of their hearing. So it's deaf or hard of hearing, which is a whole lot less of an antagonistic sort of concept than hearing impaired. We're starting to get blind people, and not everyone's there yet, and we're starting to get agencies, and not every agency is there yet, to recognize that it's blind or low vision, as opposed to blind or here or visually impaired, visually impaired. What do you think about that? How does and how does that contribute to the attitudes that people had toward you?   Erin Edgar ** 26:38 Yeah, so when I was growing up, I was handicapped, yeah, there was that too, yeah, yeah, that I was never fond of that, and my mother softened it for me, saying, well, we all have our handicaps or shortcomings, you know, and but it was really, what was meant was you had Something that really held you back. I actually, I say, this is so odd. I always, I usually say I'm totally blind. Because when I say blind, the immediate question people have is, how blind are you? Yeah, which gets back to stuff, yeah, yeah. If you're blind, my opinion, if you're blind, you're you're blind, and if you have low vision, you have partial sight. And visually impaired used to be the term, you know, when I was younger, that people use, and that's still a lot. It's still used a lot, and I will use it occasionally, generally. I think that partially sighted, I have partial vision is, is what I've heard people use. That's what, how my husband refers to himself. Low Vision is also, you know, all those terms are much less pejorative than actually being impaired,   Michael Hingson ** 27:56 right? That's kind of really the issue, yeah. My, my favorite example of all of this is a past president of the National Federation of the Blind, Ken Jernigan, you've heard of him, I assume, Oh, sure. He created a document once called a definition of blindness, and his definition, he goes through and discusses various conditions, and he asks people if, if you meet these conditions, are you blind or not? But then what he eventually does is he comes up with a definition, and his definition, which I really like, is you are blind if your eyesight has decreased to the point where you have to use alternatives to full eyesight in order to function, which takes into account totally blind and partially blind people. Because the reality is that most of those people who are low vision will probably, or they may probably, lose the rest of their eyesight. And the agencies have worked so hard to tell them, just use your eyesight as best you can. And you know you may need to use a cane, but use your eyesight as best you can, and if you go blind, then we're going to have to teach you all over again, rather than starting by saying blindness is really okay. And the reality is that if you learn the techniques now, then you can use the best of all worlds.   Erin Edgar ** 29:26 I would agree with that. I would also say you should, you know, people should use what they have. Yeah, using everything you have is okay. And I think there's a lot of a lot of good to be said for learning the alternatives while you're still able to rely on something else.   Michael Hingson ** 29:49 Point taken exactly you know, because   Erin Edgar ** 29:53 as you age, you get more and more in the habit of doing things one way, and it's. Very hard to break out of that. And if you haven't learned an alternative, there's nothing you feel like. There's nothing to fall back on, right? And it's even harder because now you're in the situation of urgency where you feel like you're missing something and you're having to learn something new, whereas if you already knew it and knew different ways to rely on things you would be just like picking a memory back up, rather than having to learn something new. Well, I've never been in that position, so I can't say, but in the abstract, I think that's a good definition.   Michael Hingson ** 30:34 Well, there are a lot of examples, like, take a person who has some eyesight, and they're not encouraged to use a cane. And I know someone who was in this situation. I think I've told the story on this podcast, but he lived in New Jersey and was travel. And traveled every day from New Jersey into Philadelphia to work, and he was on a reasonably cloudy day, was walking along. He had been given a cane by the New Jersey Commission for the Blind, but he they didn't really stress the value of using it. And so he was walking along the train to go in, and he came to the place where he could turn in and go into the car. And he did, and promptly fell between two cars because he wasn't at the right place. And then the train actually started to move, but they got it stopped, and so he was okay, but as as he tells the story, he certainly used his cane from then on. Because if he had been using the cane, even though he couldn't see it well because it was dark, or not dark, cloudy, he would have been able to see that he was not at the place where the car entrance was, but rather he was at the junction between two cars. And there's so many examples of that. There's so many reasons why it's important to learn the skills. Should a partially blind or a low vision person learn to read Braille? Well, depends on circumstances, of course, I think, to a degree, but the value of learning Braille is that you have an alternative to full print, especially if there's a likelihood that you're going to lose the rest of your eyesight. If you psychologically do it now, that's also going to psychologically help you prepare better for not having any eyesight later.   Erin Edgar ** 32:20 And of course, that leads to to blind children these days learn how to read, yeah, which is another issue.   Michael Hingson ** 32:28 Which is another issue because educators are not teaching Braille nearly as much as they should, and the literacy rate is so low. And the fact of the matter is even with George Kircher, who invented the whole DAISY format and and all the things that you can do with the published books and so on. The reality is there is still something to be said for learning braille. You don't have sighted children just watching television all the time, although sometimes my parents think they do, but, but the point is that they learn to read, and there's a value of really learning to read. I've been in an audience where a blind speaker was delivering a speech, and he didn't know or use Braille. He had a device that was, I think what he actually used was a, was, it was a Victor Reader Stream, which is   Erin Edgar ** 33:24 one of those, right?   Michael Hingson ** 33:25 I think it was that it may have been something else, but the bottom line is, he had his speech written out, and he would play it through earphones, and then he would verbalize his speech. Oh, no, that's just mess me up. Oh, it would. It was very disjointed and and I think that for me, personally, I read Braille pretty well, but I don't like to read speeches at all. I want to engage the audience, and so it's really important to truly speak with the audience and not read or do any of those other kinds of things.   Erin Edgar ** 33:57 I would agree. Now I do have a Braille display that I, I use, and, you know, I do use it for speeches. However, I don't put the whole speech on   Michael Hingson ** 34:10 there that I me too. I have one, and I use it for, I know, I have notes. Mm, hmm,   Erin Edgar ** 34:16 notes, yeah. And so I feel like Braille, especially for math. You know, when you said math and physics, like, Yeah, I can't imagine doing math without Braille. That just doesn't, you know, I can't imagine it, and especially in, you know, geometry and trigonometry with those diagrams. I don't know how you would do it without a Braille textbook, but yeah, there. There's certainly something to be said for for the the wonderful navigation abilities with, you know, e published audio DAISY books. However, it's not a substitute for knowing how to   Michael Hingson ** 34:55 read. Well, how are you going to learn to spell? How are you going to really learn sit? Structure, how are you going to learn any of those basic skills that sighted kids get if you don't use Braille? Absolutely, I think that that's one of the arenas where the educational system, to a large degree, does such a great disservice to blind kids because it won't teach them Braille.   Erin Edgar ** 35:16 Agreed, agreed. Well, thank you for this wonderful spin down Braille, Braille reading lane here. That was fun.   Michael Hingson ** 35:27 Well, so getting back to you a little bit, you must have thought or realized that probably when you went into law, you were going to face some challenges. But what was the defining moment that made you decide you're going to go into law, and what kind of challenges have you faced? If you face challenges, my making an assumption, but you know what?   Erin Edgar ** 35:45 Oh, sure. So the defining moment when I decided I wanted to go into law. It was a very interesting time for me. I was teenager. Don't know exactly how old I was, but I think I was in high school, and I had gone through a long period where I wanted to, like, be a music major and go into piano and voice and be a performer in those arenas, and get a, you know, high level degree whatnot. And then I began having this began becoming very interested in watching the Star Trek television series. Primarily I was out at the time the next generation, and I was always fascinated by the way that these people would find these civilizations on these planets, and they would be at odds in the beginning, and they would be at each other's throats, and then by the end of the day, they were all kind of   Michael Hingson ** 36:43 liking each other. And John Luke Picard didn't play a flute,   Erin Edgar ** 36:47 yes, and he also turned into a Borg, which was traumatic for me. I had to rate local summer to figure out what would happen. I was in I was in trauma. Anyway, my my father and I bonded over that show. It was, it was a wonderful sort of father daughter thing. We did it every weekend. And I was always fascinated by, like, the whole, the whole aspect of different ideologies coming together. And it always seemed to me that that's what human humanity should be about. As I, you know, got older, I thought, how could I be involved in helping people come together? Oh, let's go into law. Because, you know, our government's really good at that. That was the high school student in me. And I thought at the time, I wanted to go into the Foreign Service and work in the international field and help, you know, on a net, on a you know, foreign policy level. I quickly got into law school and realized two things simultaneously in my second year, international law was very boring, and there were plenty of problems in my local community that I could help solve, like, why work on the international stage when people in my local community are suffering in some degree with something and so I completely changed my focus to wanting to work in an area where I could bring people together and work for, you know, work on an individualized level. And as I went into the legal field, that was, it was part of the reason I went into the mediation, because that was one of the things that we did, was helping people come together. I realized, though, as I became a lawyer and actually started working in the field, most of the legal system is not based on that. It's based on who has the best argument. I wanted no part of that. Yeah, I want no part of that at all. I want to bring people together. Still, the Star Trek mentality is working here, and so when I when I started my own law firm, my immediate question to myself was, how can I now that I'm out doing my own thing, actually bring people together? And the answer that I got was help families come together, especially people thinking about their end of life decisions and gathering their support team around them. Who they want to help them? If they are ever in a situation where they become ill and they can't manage their affairs, or if you know upon their death, who do they want to help them and support them. And how can I use the law to allow that to happen? And so that's how I am working, to use the law for healing and bringing people together, rather than rather than winning an argument.   Michael Hingson ** 39:59 Yeah. Yeah, well, and I think there's a lot of merit to that. I I value the law a great deal, and I I am not an attorney or anything like that, but I have worked in the world of legislation, and I've worked in the world of dealing with helping to get legislation passed and and interacting with lawyers. And my wife and I worked with an attorney to set up our our trust, and then couple of years ago, I redid it after she passed away. And so I think that there was a lot of a lot of work that attorneys do that is extremely important. Yeah, there are, there are attorneys that were always dealing with the best arguments, and probably for me, the most vivid example of that, because it was so captivating when it happened, was the whole OJ trial back in the 1990s we were at a county fair, and we had left going home and turned on the radio, only To hear that the police were following OJ, and they finally arrested him. And then when the trial occurred, we while I was working at a company, and had a radio, and people would would come around, and we just had the radio on, and followed the whole trial. And it was interesting to see all the manipulation and all the movement, and you're right. It came down to who had the best argument, right or wrong?   Erin Edgar ** 41:25 The bloody glove. If it doesn't fit, you must acquit. Yeah, yep, I remember that. I remember where I was when they arrested him, too. I was at my grandparents house, and we were watching it on TV. My grandfather was captivated by the whole thing. But yes, there's certainly, you know, some manipulation. There's also, there are also lawyers who do a lot of good and a lot of wonderful things. And in reality, you know, most cases don't go to trial. They're settled in some way. And so, you know, there isn't always, you know, who has the best argument. It's not always about that, right? And at the same time, that is, you know, what the system is based on, to some extent. And really, when our country was founded, our founding fathers were a bunch of, like, acted in a lot of ways, like a bunch of children. If you read books on, you know, the Constitution, it was, it was all about, you know, I want this in here, and I want that in here. And, you know, a lot of argument around that, which, of course, is to be expected. And many of them did not expect our country's government to last beyond their lifetimes. Uh, James Madison was the exception, but all the others were like, Ed's going to fail. And yet, I am very, very proud to be a lawyer in this country, because while it's not perfect, our founding documents actually have a lot of flexibility and how and can be interpreted to fit modern times, which is, I think the beauty of them and exactly what the Founders intended for.   Michael Hingson ** 43:15 Yeah, and I do think that some people are taking advantage of that and causing some challenges, but that's also part of our country and part of our government. I like something Jimmy Carter once said, which was, we must adjust to changing times while holding to unwavering principles. And I think absolutely that's the part that I think sometimes is occasionally being lost, that we forget those principles, or we want to manipulate the principles and make them something that they're not. But he was absolutely right. That is what we need to do, and we can adjust to changing times without sacrificing principles. Absolutely.   Erin Edgar ** 43:55 I firmly believe that, and I would like to kind of turn it back to what we were talking about before, because you actually asked me, What are some challenges that I have faced, and if it's okay with you, I would like to get back to that. Oh, sure. Okay. Well, so I have faced some challenges for you know, to a large extent, though I was very well accommodated. I mean, the one challenge with the books that was challenging when I took the bar exam, oh, horror of horrors. It was a multiple, multiple shot deal, but it finally got done. However, it was not, you know, my failing to pass the first time or times was not the fault of the actual board of law examiners. They were very accommodating. I had to advocate for myself a little bit, and I also had to jump through some hoops. For example, I had to bring my own person to bubble in my responses on the multiple choice part, it. And bring my own person in to kind of monitor me while I did the essay portion. But they allowed me to have a computer, they allowed me to have, you know, the screen reader. They allowed me to have time and a half to do the the exam. And so we're accommodating in that way. And so no real challenges there. You know, some hoops to jump through. But it got all worked out.   Michael Hingson ** 45:23 And even so, some of that came about because blind people actually had to go all the way to the Supreme Court. Yes, the bar to the Bar Association to recognize that those things needed to be that way,   Erin Edgar ** 45:37 absolutely. And so, you know, I was lucky to come into this at a time where that had already been kind of like pre done for me. I didn't have to deal with that as a challenge. And so the only other challenges I had, some of them, were mine, like, you know, who's going to want to hire this blind person? Had a little bit of, you know, kind of challenge there, with that mindset issue for a while there, and I did have some challenges when I was looking for employment after I'd worked for legal aid for a while, and I wanted to move on and do something else. And I knew I didn't want to work for a big, big firm, and I would, I was talking to some small law firms about hiring me, small to mid size firms. And I would get the question of, well, you're blind, so what kind of accommodations do you need? And we would talk about, you know, computer, special software to make a talk, you know, those kinds of things. And it always ended up that, you know, someone else was hired. And I can, you know, I don't have proof that the blindness and the hesitancy around hiring a disabled person or a blind person was in back of that decision. And at the same time, I had the sense that there was some hesitation there as well, so that, you know, was a bit of a challenge, and starting my own law firm was its own challenge, because I had to experiment with several different software systems to Find one that was accessible enough for me to use. And the system I'm thinking about in particular, I wouldn't use any other system, and yet, I'm using practically the most expensive estate planning drafting system out there, because it happens to be the most accessible. It's also the most expensive. Always that. There's always that. And what's it called? I'm curious. It's called wealth Council, okay, wealth. And then the word councils, Council, SEL, and it's wonderful. And the folks there are very responsive. If I say something's not accessible, I mean, they have fixed things for me in the past. Isn't that great? And complain, isn't that wonderful? It is wonderful. And that's, that's awesome. I had a CRM experience with a couple of different like legal CRM software. I used one for a while, and it was okay. But then, you know, everyone else said this other one was better and it was actually less accessible. So I went back to the previous one, you know. So I have to do a lot of my own testing, which is kind of a challenge in and of itself. I don't have people testing software for me. I have to experiment and test and in some cases, pay for something for a while before I realize it's not, you know, not worth it. But now I have those challenges pretty much ironed out. And I have a paralegal who helps me do some things that, like she proof reads my documents, for instance, because otherwise there may be formatting things that I'm not, that I miss. And so I have the ability to have cited assistance with things that I can't necessarily do myself, which is, you know, absolutely fine,   Michael Hingson ** 49:04 yeah. Now, do you use Lexus? Is it accessible?   Erin Edgar ** 49:08 I don't need Lexus, yeah, yeah. I mean, I have, I'm a member of the Bar Association, of my, my state bar association, which is not, not voluntary. It's mandatory. But I'm a member primarily because they have a search, a legal search engine that they work with that we get for free. I mean, with our members, there you go. So there you go. So I don't need Lexus or West Law or any of those other search engines for what I do. And if I was, like, really into litigation and going to court all time and really doing deep research, I would need that. But I don't. I can use the one that they have, that we can use so and it's, it's a entirely web based system. It's fairly accessible   Michael Hingson ** 49:58 well, and. That makes it easier to as long as you've got people's ears absolutely make it accessible, which makes a lot of sense.   Erin Edgar ** 50:08 Yeah, it certainly does well.   Michael Hingson ** 50:10 So do you regard yourself as a resilient person? Has blindness impacted that or helped make that kind of more the case for you? Do you think I do resilience is such an overused term, but it's fair. I know   Erin Edgar ** 50:24 I mean resilience is is to my mind, a resilient person is able to face uh, challenges with a relatively positive outlook in and view a challenge as something to be to be worked through rather than overcome, and so yes, I do believe that blindness, in and of itself, has allowed me to find ways to adapt to situations and pivot in cases where, you know, I need to find an alternative to using a mouse. For instance, how would I do that? And so in other areas of life, I am, you know, because I'm blind, I'm able to more easily pivot into finding alternative solutions. I do believe that that that it has made me more resilient.   Michael Hingson ** 51:25 Do you think that being blind has caused you, and this is an individual thing, because I think that there are those who don't. But do you think that it's caused you to learn to listen better?   Erin Edgar ** 51:39 That's a good question, because I actually, I have a lot of sighted friends, and one of the things that people just assume is that, wow, you must be a really good listener. Well, my husband would tell you that's not always the case. Yeah. My wife said the same thing, yeah. You know, like everyone else, sometimes I hear what I want to hear in a conversation and at the same time, one of the things that I do tell people is that, because I'm blind, I do rely on other senses more, primarily hearing, I would say, and that hearing provides a lot of cues for me about my environment, and I've learned to be more skillful at it. So I, I would say that, yes, I am a good listener in terms of my environment, very sensitive to that in in my environment, in terms of active listening to conversations and being able to listen to what's behind what people say, which is another aspect of listening. I think that that is a skill that I've developed over time with conscious effort. I don't think I'm any better of a quote, unquote listener than anybody else. If I hadn't developed that primarily in in my mediation, when I was doing that, that was a huge thing for us, was to be able to listen, not actually to what people were saying, but what was behind what people were saying, right? And so I really consciously developed that skill during those years and took it with me into my legal practice, which is why I am very, very why I very much stress that I'm not only an attorney, but I'm also a counselor at law. That doesn't mean I'm a therapist, but it does mean I listen to what people say so that and what's behind what people say, so that with the ear towards providing them the legal solution that meets their needs as they describe them in their words.   Michael Hingson ** 53:47 Well, I think for me, I learned to listen, but it but it is an exercise, and it is something that you need to practice, and maybe I learned to do it a little bit better, because I was blind. For example, I learned to ride a bike, and you have to learn to listen to what's going on around you so you don't crash into cars. Oh, but I'd fall on my face. You can do it. But what I what I really did was, when I was I was working at a company, and was told that the job was going to be phased out because I wasn't a revenue producer, and the company was an engineering startup and had to bring in more revenue producers. And I was given the choice of going away or going into sales, which I had never done. And as I love to tell people, I lowered my standards and went from science to sales. But the reality is that that I think I've always and I think we all always sell in one way or another, but I also knew what the unemployment rate among employable blind people was and is, yeah, and so I went into sales with with no qualms. But there I really learned to listen. And and it was really a matter of of learning to commit, not just listen, but really learning to communicate with the people you work with. And I think that that I won't say blindness made me better, but what it did for me was it made me use the technologies like the telephone, perhaps more than some other people. And I did learn to listen better because I worked at it, not because I was blind, although they're related   Erin Edgar ** 55:30 exactly. Yeah, and I would say, I would 100% agree I worked at it. I mean, even when I was a child, I worked at listening to to become better at, kind of like analyzing my environment based on sounds that were in it. Yeah, I wouldn't have known. I mean, it's not a natural gift, as some people assume, yeah, it's something you practice and you have to work at. You get to work at.   Michael Hingson ** 55:55 Well, as I point out, there are people like SEAL Team Six, the Navy Seals and the Army Rangers and so on, who also practice using all of their senses, and they learn, in general, to become better at listening and other and other kinds of skills, because they have to to survive, but, but that's what we all do, is if we do it, right, we're learning it. It's not something that's just naturally there, right? I agree, which I think is important. So you're working in a lot of estate planning and so on. And I mentioned earlier that we it was back in 1995 we originally got one, and then it's now been updated, but we have a trust. What's the difference between having, like a trust and a will?   Erin Edgar ** 56:40 Well, that's interesting that you should ask. So A will is the minimum that pretty much, I would say everyone needs, even though 67% of people don't have one in the US. And it is pretty much what everyone needs. And it basically says, you know, I'm a, I'm a person of sound mind, and I know who is important to me and what I have that's important to me. And I wanted to go to these people who are important to me, and by the way, I want this other person to manage things after my death. They're also important to me and a trust, basically, there are multiple different kinds of trusts, huge numbers of different kinds. And the trust that you probably are referring to takes the will to kind of another level and provides more direction about about how to handle property and how how it's to be dealt with, not only after death, but also during your lifetime. And trusts are relatively most of them, like I said, there are different kinds, but they can be relatively flexible, and you can give more direction about how to handle that property than you can in a will, like, for instance, if you made an estate plan and your kids were young, well, I don't want my children to have access to this property until they're responsible adults. So maybe saying, in a trust until they're age 25 you can do that, whereas in a will, you it's more difficult to do that.   Michael Hingson ** 58:18 And a will, as I understand it, is a lot more easily contested than than a trust.   Erin Edgar ** 58:24 You know, it does depend, but yes, it is easily contested. That's not to say that if you have a trust, you don't need a will, which is a misconception that some, yeah, we have a will in our trust, right? And so, you know, you need the will for the court. Not everyone needs a trust. I would also venture to say that if you don't have a will on your death, the law has ideas about how your property should be distributed. So if you don't have a will, you know your property is not automatically going to go to the government as unclaimed, but if you don't have powers of attorney for your health care and your finance to help you out while you're alive, you run the risk of the A judge appointing someone you would not want to make your health care and financial decisions. And so I'm going to go off on a tangent here. But I do feel very strongly about this, even blind people who and disabled people who are, what did you call it earlier, the the employable blind community, but maybe they're not employed. They don't have a lot of   Michael Hingson ** 59:34 unemployed, unemployed, the unemployable blind people, employable   Erin Edgar ** 59:38 blind people, yes, you know, maybe they're not employed, they're on a government benefit. They don't have a lot of assets. Maybe they don't necessarily need that will. They don't have to have it. And at the same time, if they don't have those, those documents that allow people to manage their affairs during their lifetime. Um, who's going to do it? Yeah, who's going to do that? Yeah, you're giving up control of your body, right, potentially, to someone you would not want, just because you're thinking to yourself, well, I don't need a will, and nothing's going to happen to me. You're giving control of your body, perhaps, to someone you don't want. You're not taking charge of your life and and you are allowing doctors and hospitals and banks to perpetuate the belief that you are not an independent person, right? I'm very passionate about it. Excuse me, I'll get off my soapbox now. That's okay. Those are and and to a large extent, those power of attorney forms are free. You can download them from your state's website. Um, they're minimalistic. They're definitely, I don't use them because I don't like them for my state. But you can get you can use them, and you can have someone help you fill them out. You could sign them, and then look, you've made a decision about who's going to help you when you're not able to help yourself,   Michael Hingson ** 1:01:07 which is extremely important to do. And as I mentioned, we went all the way and have a trust, and we funded the trust, and everything is in the trust. But I think that is a better way to keep everything protected, and it does provide so much more direction for whoever becomes involved, when, when you decide to go elsewhere, then, as they put it, this mortal coil. Yes, I assume that the coil is mortal. I don't know.   Erin Edgar ** 1:01:37 Yeah, who knows? Um, and you know trusts are good for they're not just for the Uber wealthy, which is another misconception. Trust do some really good things. They keep your situation, they keep everything more or less private, like, you know, I said you need a will for the court. Well, the court has the will, and it most of the time. If you have a trust, it just says, I want it to go, I want my stuff to go into the Michael hingson Trust. I'm making that up, by the way, and I, you know, my trust just deals with the distribution, yeah, and so stuff doesn't get held up in court. The court doesn't have to know about all the assets that you own. It's not all public record. And that's a huge, you know, some people care. They don't want everyone to know their business. And when I tell people, you know, I can go on E courts today and pull up the estate of anyone that I want in North Carolina and find out what they owned if they didn't have a will, or if they just had a will. And people like, really, you can do that? Oh, absolutely, yeah. I don't need any fancy credentials. It's all a matter of public record. And if you have a trust that does not get put into the court record unless it's litigated, which you know, it does happen, but not often,   Michael Hingson ** 1:02:56 but I but again, I think that, you know, yeah, and I'm not one of those Uber wealthy people. But I have a house. We we used to have a wheelchair accessible van for Karen. I still have a car so that when I need to be driven somewhere, rather than using somebody else's vehicle, we use this and those are probably the two biggest assets, although I have a bank account with with some in it, not a lot, not nearly as much as Jack Benny, anyway. But anyway, the bottom line is, yeah, but the bottom line is that I think that the trust keeps everything a lot cleaner. And it makes perfect sense. Yep, it does. And I didn't even have to go to my general law firm that I usually use. Do we cheat them? Good, and how so it worked out really well. Hey, I watched the Marx Brothers. What can I say?   Erin Edgar ** 1:03:45 You watch the Marx Brothers? Of course.   Michael Hingson ** 1:03:49 Well, I want to thank you for being here. This has been a lot of fun, and I'm glad that we did it and that we also got to talk about the whole issue of wills and trusts and so on, which is, I think, important. So any last things that you'd like to say to people, and also, do you work with clients across the country or just in North Carolina?   Erin Edgar ** 1:04:06 So I work with clients in North Carolina, I will say that. And one last thing that I would like to say to people is that it's really important to build your support team. Whether you're blind, you know, have another disability, you need people to help you out on a day to day basis, or you decide that you want people to help you out. If you're unable to manage your affairs at some point in your life, it's very important to build that support team around you, and there is nothing wrong. You can be self reliant and still have people on your team yes to to be there for you, and that is very important. And there's absolutely no shame, and you're not relinquishing your independence by doing that. That. So today, I encourage everyone to start thinking about who's on your team. Do you want them on your team? Do you want different people on your team? And create a support team? However that looks like, whatever that looks like for you, that has people on it that you know, love and trust,   Michael Hingson ** 1:05:18 everybody should have a support team. I think there is no question, at least in my mind, about that. So good point. Well, if people want to maybe reach out to you, how do they do that?   Erin Edgar ** 1:05:29 Sure, so I am on the interwebs at Erin Edgar legal.com that's my website where you can learn more about my law firm and all the things that I do,   Michael Hingson ** 1:05:42 and Erin is E r i n, just Yes, say that Edgar, and   Erin Edgar ** 1:05:45 Edgar is like Edgar. Allan Poe, hopefully less scary, and you can find the contact information for me on the website. By Facebook, you can find me on Facebook occasionally as Erin Baker, Edgar, three separate words, that is my personal profile, or you can and Michael will have in the show notes the company page for my welcome as   Michael Hingson ** 1:06:11 well. Yeah. Well, thank you for being here, and I want to thank all of you for listening. This has been a fun episode. It's been great to have Erin on, love to hear your thoughts out there who have been listening to this today. Please let us know what you think. You're welcome to email me at Michael H i@accessibe.com M, I, C, H, A, E, L, H i at accessibe, A, C, C, E, S, S, i, b, e.com, or go to our podcast page, www, dot Michael hingson.com/podcast, I wherever you're listening, please give us a five star rating. We really appreciate getting good ratings from people and reading and getting to know what you think. If you know anyone who you think might be a good guest, you know some people you think ought to come on unstoppable mindset. Erin, of course, you as well. We would appreciate it if you'd give us an introduction, because we're always looking for more people to have come on and help us show everyone that we're all more unstoppable than we think we are, and that's really what it's all about, and what we want to do on the podcast. So hope that you'll all do that, and in the meanwhile, with all that, Erin, I want to thank you once more for being here and being with us today. This has been a lot of fun. Thank you so much,   Erin Edgar ** 1:07:27 Michael. I very much enjoyed it.   Michael Hingson ** 1:07:34 You have been listening to the Unstoppable Mindset podcast. Thanks for dropping by. I hope that you'll join us again next week, and in future weeks for upcoming episodes. To subscribe to our podcast and to learn about upcoming episodes, please visit www dot Michael hingson.com slash podcast. Michael Hingson is spelled m i c h a e l h i n g s o n. While you're on the site., please use the form there to recommend people who we ought to interview in upcoming editions of the show. And also, we ask you and urge you to invite

When Crystal Emery started to fall down, without tripping, everyone said she was just clumsy. But in 1981, Crystal Emery was diagnosed with Charcot-Marie-Tooth disease. For some people living with Charcot-Marie-Tooth disease, the symptoms can be limited to body weakness and muscle atrophy. But for the Emery, the disease progressed. She lost the use of her legs and hands. Today, she uses a wheelchair and sometimes needs a breathing machine. But despite her circumstances, she is anything but limited. Emery remained committed to her artistic craft, working as an artist, author, filmmaker, activist and comedian. Today, she joins us to talk about her work. Later, we get an update on the future of disability services in Connecticut, and beyond. Advocates fear that decades of advocacy for better disability services, and more inclusivity, could be walked back among federal funding cuts. Learn more about Emery's performance in New Haven here. GUESTS: Crystal Emery: filmmaker, author and comedian Joy Houlder: Art Director at the Art Connection Studio in Hartford Tobey Partch-Davies: Executive Director of Disability Rights Connecticut Support the show: http://wnpr.org/donateSee omnystudio.com/listener for privacy information.

Fianna Fáil TD Catherine Ardagh speaks out about the difficulties her family has experienced navigating Ireland's autism services and the education system.

Send us a textOur guest for this episode is Dr Matt Frize, Director of Forensic Disability Services, which sits within The Victorian State Government's Department of Families, Fairness and Housing (DFFH).Co-host Karenza Louis-Smith and I were lucky to catch some time with Matt at the Complex Needs Conference earlier this year.The sold out conference was co-hosted by ermha365 and ACSO Australia and funded by the Department of Families, Fairness and Housing.We talk to Matt, a senior specialist psychologist, about how Forensic Disability Services addresses the needs of people with a cognitive impairment who come into contact with the criminal justice system in Victoria.In this episode Matt mentions the ARMIDILO-S Assessment - the Assessment of Risk and manageability of Individuals with Developmental and Intellectual Limitations who Offend. More info at armidilo.netermha365 provides mental health and disability support for people in Victoria and the Northern Territory. Find out more about our services at our website.Helplines (Australia):Lifeline 13 11 14QLIFE 1800 184 52713 YARN 13 92 76Suicide Callback Service 1300 659 467ermha365 acknowledges that our work in the community takes place on the Traditional Lands of many Aboriginal and Torres Strait Islander Peoples and therefore respectfully recognise their Elders, past and present, and the ongoing Custodianship of the Land and Water by all Members of these Communities.We recognise people with lived experience who contribute to GET REAL podcast, and those who love, support and care for them. We recognise their strength, courage and unique perspective as a vital contribution so that we can learn, grow and achieve better outcomes together.

If Dragon Con is your kind of happy chaos, Disability Services is the part that keeps it manageable. In this episode, Alex and Todd explain how to get an assessment, what the sticker system covers (seat‑in‑line/end‑of‑row, wheelchair seating, proximity, sightline), safe‑spaces for service dogs, and the medical tag. They also outline realities in the big rooms: line caps with tickets, one companions, and a focus on getting you in the room. The post 50 Days of Dragon Con 2025 – Day 42 – Disability Services first appeared on The Unique Geek.

Living Well Disability Services runs group homes across the Twin Cities that serve adults living with disabilities. They are now facing funding cuts and have concerns about their impact. President and CEO Tom Gillepsie talks about how they are handling these developments as they prepare for their annual fundraising gala in Minneapolis tonight.

Living Well Disability Services runs group homes across the Twin Cities that serve adults living with disabilities. They are now facing funding cuts and have concerns about their impact. President and CEO Tom Gillepsie talks about how they are handling these developments as they prepare for their annual fundraising gala in Minneapolis tonight.

Rebecca Enders discusses supports and services for individuals with intellectual and developmental disabilities. Rebecca, a board-certified case manager and director of case management at Optimal Health Care in Maryland, outlines the importance of coordinated services, including Medicaid waivers, community integration, and support across the lifespan. Having transitioned from a 15-year career in education, Rebecca found renewed purpose in case management, eventually developing a data-driven acuity model called Atlas Acuity. This system assesses client needs using weighted metrics to calculate an acuity score, guiding the assignment of caseloads and preventing case manager burnout. Her approach emphasizes time allocation and service equity, empowering professionals to deliver meaningful care while sustaining well-being and effectiveness within the field.

"Without Walls," a program of the Center for Disability Services, visited the Sanctuary. The group interviewed each other about the work and hobbies which take up their time, and what they love about their days. This group included Catarina, James, Natalie, Wendy, Deserea, Uriah, Steven, and staff members Joel, Lucy, and Meg.

Today, on the Hudson Mohawk Magazine, First, Mark Dunlea interviews Iridian Riccobono Lucas about the push for a NYS legislature special session. Then, Willie Terry speaks with Ta-Seam Murdock about their years of service to the Albany community. Later on, "Without Walls," a program of the Center for Disability Services, visits the Sanctuary. After that, we have a live interview with Willa Ferrer from the blue mountain center. Finally, Hannah Rowe talks about being a neurodivergent healer and the power of journaling. Hosted by Khin and Cricket, engineered by Marrow

This week… Seattle has two new parks. One with a futuristic jellyfish, one brought to us by the heir of the Chuck E Cheese creator. Two big things have gone up at Amazon: prices on their site, and carbon emissions. And the Blue Angels will be in town once again next week… Time to prepare. Film critic Chase Hutchinson and Psychology in Seattle host Dr. Kirk Honda are here to break down the week. Learn more about Seattle’s Disability Services here. We can only make Seattle Now because listeners support us. Tap here to make a gift and keep Seattle Now in your feed. Got questions about local news or story ideas to share? We want to hear from you! Email us at seattlenow@kuow.org, leave us a voicemail at (206) 616-6746 or leave us feedback online.See omnystudio.com/listener for privacy information.

People with disabilities often face unique challenges in navigating the healthcare system, including communication barriers, lack of accessibility, and discrimination. Therefore, it is crucial for individuals with disabilities to receive support for advocacy in their healthcare to ensure they receive the appropriate care and accommodations they need. Advocacy can help Read More Shared by United Resource Connection July 18, 2025

In this insightful episode, Dr. Tara Starwalt welcomes Rachael Jones to discuss the vital role of case managers in supporting individuals with intellectual and developmental disabilities (IDD). Rachael shares her journey and the importance of person-centered care, autonomy, and advocacy in social work. The conversation also highlights the wide range of services New Vista provides to individuals and families across 17 counties in Central Kentucky.Presented by: New Vista, Central Kentucky's Community Mental Health CenterHost: Dr. Tara Starwalt, Director of New Vista's Regional Prevention CenterGuest: Rachael Jones, Director of Intellectual and Developmental Disability (IDD)Community-Based Operations at New VistaFind out more about New Vista at newvista.org or by calling our 24-Hour Helpline1.800.928.8000

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

- How Being a Member of Diverse Communities May Impact Your Access to Oncology Care, Treatment, Management of Treatment Side Effects, & Pain Management - What to Expect from Your Relationship with Your Health Care Team: Is Your Health Care Team Providing You with Equitable, Excellent Care - What to Consider When Selecting a Cancer Care Team & Treatment Facility - Languages Spoken & Diversity of the Health Care Team - What Is Cultural Humility & How Your Care Team Practices Cultural Humility - When to Seek a Second Opinion: Finding the Best Care - How to Request Copies of Treatment & Pathology Reports - Your Encounter Notes - Key Questions to Ask Your Health Care Team About Your Treatment Plan - How to Self-Advocate with Health Care Staff: Languages Spoken, Disability Services & Other Barriers to Health Equity - Health Literacy: How to Become More Knowledgeable & Satisfied with Your Care - Your Important Role in Shared Decision-Making - Tips to Communicate with Your Health Care Team to Determine if They are the Best Team for You - Guidelines to Improve Telehealth/Telemedicine Appointments, Including Technology, Prepared List of Questions & Discussion of OpenNotes - Questions for Our Panel of Experts

In this inspiring episode of IDD Health Matters with Dr. Craig Escudé, we welcome Tony Thomas, Executive Director of Welcome House in Cleveland, Ohio. With over 24 years of leadership experience, Tony shares his remarkable journey into the field of intellectual and developmental disabilities (IDD) — from a life-changing family discovery to a lifelong career dedicated to empowering individuals and advancing health equity. Tony discusses how frontline Direct Support Professionals (DSPs) are the heart of the disability services field, his innovative initiatives to improve healthcare access for people with IDD, and how Welcome House is creating clear career pathways for DSPs, including specialized medical support roles. He also talks about the urgent need to address workforce shortages and improve wages for caregivers. If you're passionate about making a difference, building a meaningful career, or learning how true inclusion transforms lives, this episode is packed with wisdom, hope, and practical ideas for the future of IDD services.

In this inspiring episode of IDD Health Matters with Dr. Craig Escudé, we welcome Tony Thomas, Executive Director of Welcome House in Cleveland, Ohio. With over 24 years of leadership experience, Tony shares his remarkable journey into the field of intellectual and developmental disabilities (IDD) — from a life-changing family discovery to a lifelong career dedicated to empowering individuals and advancing health equity. Tony discusses how frontline Direct Support Professionals (DSPs) are the heart of the disability services field, his innovative initiatives to improve healthcare access for people with IDD, and how Welcome House is creating clear career pathways for DSPs, including specialized medical support roles. He also talks about the urgent need to address workforce shortages and improve wages for caregivers. If you're passionate about making a difference, building a meaningful career, or learning how true inclusion transforms lives, this episode is packed with wisdom, hope, and practical ideas for the future of IDD services.

This episode of For Human Sake features Charles Bartlett from the Kansas Department for Aging and Disability Services (KDADS), who explains the agency's crucial role in the community by overseeing mental health, substance use disorder, housing, and problem gambling services through grants and contracts with local providers. Bartlett, with over 20 years of experience in the field and a Master's in Social Work obtained later in his career, emphasizes the importance of both direct service experience and policy work, highlighting potential opportunities at KDADS for individuals with a Family and Human Services degree.

Is practical intelligence the secret ingredient missing from your workplace? In this episode of the Friends for Life Podcast, host Tony Stuart—CEO of Friends for Life and a DSP with over 20 years of experience—dives into what it *really* means to think practically in the world of disability services. Forget the clichés about "common sense." Tony breaks down how true practical thinking is rooted in logic, personal accountability, and understanding your own strengths. You'll hear real talk about: - Why not every DSP or supervisor operates the same way—and why that's okay - How to handle disciplinary action with maturity and strategy - The dangers of asking for roles you're not ready for (and how to get there instead) - What taking it "on the chin" really looks like in a high-stress caregiving environment - Why self-awareness and humility are crucial in human services Whether you're a DSP, agency provider, or administrator, this episode challenges you to rethink how you operate, communicate, and grow within the system—all in service of the people who rely on you most.

MVCC students share their personal experiences and perspectives living with disabilities. This event offers a unique opportunity to learn about life inside and outside of the classroom. Panelists will highlight what they wish others understood about living with disabilities and how to create a more inclusive and supportive environment. This event is part of the One Book program and is organized by the Center for Disability Services.

#richmondva #blackbank #maggielenawalker In 1903, Maggie Lena Walker was the first Black woman to charter an American bank and become its Bank President... An astounding accomplishment for a Black Woman in the early 1900s. The lesson highlights five key integrated Black ideas exemplified by Walker, emphasizing the importance of independent thought, collaborative leadership, and practical application of concepts for Black advancement.Professor Kimya outlined five key lessons derived from the work of Maggie Lena Walker that are still pertinent for Black people today. These are presented as interconnected "integrated black ideas".Firstly, Walker emphasized the critical need for Black people to develop their own concepts and theories and to actively implement them through strategies and actions to achieve tangible results. She serves as an example of someone who moved beyond abstract ideas to create real-world change.Secondly, Walker's work underscored the importance of collaborative leadership and the collective development of knowledge. This challenges individualistic approaches and highlights the power of working together and leveraging available resources for communal advancement.Thirdly, Walker demonstrated the significance of establishing economic development initiatives within the Black community. Her involvement in banking, newspapers, and retail showcased a strategy of connecting these sectors to foster economic empowerment.Fourthly, Walker's leadership within the Independent Order of St. Luke and her participation in secret societies illustrated the vital role of community organizations and networking in facilitating social and economic progress for Black people. These networks provided essential support and opportunities.Finally, Walker's later engagement with Disability Services emphasized the importance of addressing the diverse needs present within the Black community, ensuring that efforts for advancement are inclusive of all members. There were a few White women who preceded Maggie Lena Walker as a Bank founder; their stories are here:https://www.nps.gov/mawa/learn/historyculture/female-bank-presidents.htm Keywords:Maggie Lena WalkerRichmond VABankingFirst woman bank presidentIndependent Order of St. LukeEconomic DevelopmentCollaborationsIndividualismBoycottsHistorical ContextPolitical DevelopmentCommunity OrganizationsNetworkingDisability ServicesAlma BarloGrassroots ActivismRichmond Tenants Organization (RTO)Public HousingEmpowering the PowerlessBlack Concepts and TheoriesSolutions-Oriented ApproachWealth BuildingResource DevelopmentScams and Unrealistic SolutionsTalented TenthBlack Intellectuals and ScholarsInterested in sponsoring the channel? Email OurBlackImprovement@gmail.com. $20k - $90K of business funding - https://mbcapitalsolutions.com/positive-vibes-consulting/ Money for your business: https://davidallencapital.com/equipment-financing?u=&u=PositiveVibes Money for Real Estate Investments: https://PositiveVibesFinancial.com Purify yourself, house, and environment to remain safe: https://www.vollara.com/PositiveVibes Invest in stocks via STASH: https://get.stashinvest.com/sekosq72j Fix your credit: https://positivevibes.myecon.net/my-credit-system/ Raise money with Republic: https://republic.com/raise/i/jpdajr Raise money with WeFunder: https://wefunder.com/sekovarner/raise #GetOnCode #GetOnCodeShow #GetOnCodePodcast #TheFlyGuysShow #OmegaPsiPhi #Ques #Uplift #ConsciousCommunity #PanAfrican #FoundationalBlackAmerican #Indian #BlackIndian #Melanin #Indigenous #BIPOC #CopperColored #Moorish #B1 #FBA #ADOS #BlackAmerican #AfricanAmerican #Investment #Wealth

Today, we're excited to have Program Development Specialist, Donald Clark, join us with the DC Department on Disability Services (DDS). Making tech accessible to all, is a core OCTO principle that always informs our work – which is why having DDS as a guest is so important.    The District's Tech Plan is focused on Unleashing the Possible. OCTO knows everyone can't unleash the possible – unless everyone has tech access. Whether it's our Web Team using tools to scan all DC Government websites for accessibilityor deploying the full suite of Microsoft Accessibility Solutions, when OCTO leads or supports initiatives, we strive to effectively serve people with different hearing, sight and neuro-diverse needs.  In the works now is an exciting collaboration with ODR to require DC Government agencies to ensure that their websites are fully accessible…so having DDS' Donald Clark – as our guest today is perfect! 

In the face of recent national-level changes to healthcare funding programs, Amelia Home Care is attempting to expand access to pediatric home care services in the Bronx. Read about their services at https://ameliahomecareny.com/ Amelia Home Care City: Brooklyn Address: 3007 Ocean Parkway Website: https://www.ameliahomecareny.com/

Pietrina Probst is a Certified Rehabilitation Counselor and Director of ADA, Student Access & Disability Services at Elgin Community College. In this conversation, Pietrina shares insights into the unique considerations community colleges consider in providing disability services and why cross-departmental collaboration is a blueprint for success in expanding services for students with disabilities.Elgin Community College Student Access & Disability Services webpageElgin Community College Accessibility webpageInformation on Northern Illinois University Being a CRCC Center of Excellence

Today, I'm talking to Becky Grace Irwing, a BABCP Accredited CBT & EMDR qualified Therapist and qualified Mental Health Nurse. Becky spent 8 years as a Mental Health Nurse and 3 years as a CBT Therapist. She has worked across many mental health services for 14 years including acute, forensic and CAMHS services as well as University Mental Health and Disability Services and a London talking therapies service.  She has a background history as a Fitness and Yoga Instructor of 10 years, and has worked in the fitness industry from the age of 17 to 35. Becky specialises in Eating Disorders, Neurodiversity and complex trauma issues and the link between these. She has a lived experience of binge eating for nearly 30 years, and has been recovered for 7 years. Becky has ADHD and is self-diagnosed with Autism. Becky describes herself as a dog Mum of two sausage dogs, a human first, and she likes to knit and is sustainability conscious.  In the episode today, Becky talks about her own recovery journey focusing particularly around eating difficulties and the interplay with neurodivergence.  She then goes on to talk about why neurodivergent humans can be particularly vulnerable to developing eating disorders. She talks about eating disorders as coping strategies and explores in more depth the issues that often present in therapy when someone has ADHD or autism. It's a really interesting episode. Becky has a wealth of information to share. I hope that you enjoy it.   To find out more about Becky: - Instagram: @beckygracetherapy Website: - www.beckygracetherapy.co.uk FB and LinkedIn: Becky Grace Irwing   Harriet's Substack: https://substack.com/@theeatingdisordertherapist   Harriet Frew's current offers: - Online 10 Steps to Intuitive Eating Course https://www.theeatingdisordertherapist.co.uk/online-courses.html Online Breaking Free from Bulimia  https://www.theeatingdisordertherapist.co.uk/bulimia-nervosa-online-course.html Eating Disorders Training for Professionals https://www.theeatingdisordertherapist.co.uk/eating-disorders-training-with-harriet-frew.html Body Image Training for Professionals https://www.theeatingdisordertherapist.co.uk/body-image-training-with-harriet-frew.html  

Up next on the P.E.G Podcast, we have the incredible MySherri Williams, founder of Pinnacle Disability Services. She's here to shed light on how veterans and individuals with disabilities can successfully navigate the system and secure the benefits they deserve.We also explore how the upcoming presidency of Donald Trump might impact the economy and those relying on disability support. MySherri shares her powerful story of growing Pinnacle Disability Services from a one-person operation into a thriving, multi-team company.This is an episode full of valuable insights and inspiration—don't miss it!Tune in now, subscribe to the P.E.G Podcast, and let us know your thoughts in the comments or reviews!#PEGPodcast #PositiveEnergyGeneration #DisabilityAdvocacy #VeteranSupport #EntrepreneurJourney #PinnacleDisabilityServices #Inspiration #EconomicImpact #NewYearGoals #PodcastLife #SupportAndInspire***NO COPYRIGHT CONTENT*** (All content belongs to the original owner)Additional Credit:Music: Summer Walker by Anonymous BeatsMoonlite Love by Abir'yahSlow Down (Hip Hop Instrumental) by Smooth4lyfeBest Life by Pastor B ft Lyrikal Lyriks & RepFollow our IG:https://www.instagram.com/p.e.g_podcast?igsh=eWRrcnk1MHlvdmQ4Shop at PEGSTYLES:https://pegstyles.com/Follow our FB Community:https://www.facebook.com/share/14dYSoo3yz/?mibextid=wwXIfrFollow PEGSTYLES IG:https://www.instagram.com/pegstyles?igsh=Y3gzYmdvbnNqdmFj

Welcome to Ep 138: Neuroinclusive Advising with Rachel Adams and Fred Zinn. Rachel Adams is Associate Director of Education and Training, Disability Services at UMAss Amherst and a Doctoral Candidate, UMass Higher Education and Administration. She offers education and training around disability and also teaches undergraduate students at the University of Massachusetts at Amherst. Fred Zinn is Associate Director, Digital Learning in the College of Education at the University of Massachusetts, Amherst, and focuses his practice on teaching teachers how to teach and teaching with technology as well as educating others about accessibility. In today's conversation, Rachel, Fred, and I discuss how faculty and staff in the role of an advisor can support undergraduate and graduate students, both formally and informally. We discuss best advising practices specifically with a neuro inclusive lens. You'll hear my new favorite term in today's conversation “unconditional positive regard” in relation to supporting neurodivergent students, but it seems appropriate to me to use in many other situations. I hope you enjoy this thoughtful conversation on the Think UDL podcast.

“97 percent of Meals on Wheels clients say that this type of programming does help them keep their pets. So it is really impactful and we're so grateful for that.” This episode is sponsored-in-part by Maddie's Fund and the Whisker Tracker App. In this episode, Stacy LeBaron dives into the inspiring intersection of pet welfare and human services with Morgan Hulquist of Meals on Wheels America and Dan Capone of Meals on Wheels South Texas. They discuss the groundbreaking Meals on Wheels Loves Pets program, which provides pet food, veterinary care, and emergency boarding for the pets of homebound seniors. With this unique approach, Meals on Wheels is helping clients maintain cherished bonds with their animals, often their primary source of comfort and companionship. Morgan and Dan highlight the program's nationwide growth, supported by partnerships like PetSmart Charities, and share stories that reveal the profound impact these services have on clients' lives. From local pet food deliveries to connecting seniors with animal welfare resources, Meals on Wheels is tackling both logistical challenges and emotional needs to keep pets and people together. Listeners will learn how this program supports social connection and alleviates financial pressures, enabling seniors to keep their beloved pets close despite challenges. Discover the powerful role pets play in reducing isolation and learn how communities can rally together to expand this compassionate model. Tune in to explore how Meals on Wheels is innovating to serve not just meals, but also love, care, and peace of mind for seniors and their four-legged family members. Press Play Now For: The Power of Pets: How Meals on Wheels serves seniors and their beloved companions Keeping Pets at Home: Meals on Wheels Loves Pets program and its impact New Frontiers in Pet Care: From emergency boarding to veterinary partnerships Meeting Unique Needs: Finding solutions for pet food delivery challenges A Compassionate Approach: Building trust with pet-owning clients National Reach, Local Touch: Expanding pet programs through community partnerships Future Aspirations: Morgan's vision for a fully pet-inclusive Meals on Wheels Resources Mentioned: Meals on Wheels Find Meals Locator Meals on Wheels South Texas United Spay Alliance - Find Spay & Neuter Help

Simon Sansome was born, raised and continues to live in England. He had what he considers a normal childhood except for the fact that he did have and has today dyslexia. As he describes it, reading even to day some forty-two years after he came on the scene, is extremely difficult for him. He does, however, write well. He will tell us about his growing up, going to a British college, then joining the workforce and eventually going to a university. Yes, college as he will tell us is different from university.   In 2014 he was struck with a slipped disc. Unfortunately, the chiropractor who then attempted to fix the problem only made matters much worse and Simon became paralyzed from the waist down. Simon determined to move forward and went back to the university where he graduated in 2018 with a degree in journalism.   Along the way Simon created a Facebook page and a community called “Snowball Community”. As the community evolved Simon and later others began posting information about accessible places first in England and then elsewhere as well. Today Snowball has received countless awards for all it is doing to promote accessibility and Simon tells us that they expect to have over a Million viewers on a regular basis. Snowball Community will soon be providing opportunities for restaurants, shops and other places to obtain in-person accessibility assessments and the ratings from those assessments will be available to promote the businesses that are evaluated.   Simon by any standard is unstoppable and inspiring. I trust that you will agree.       About the Guest:   Simon sustained a life changing injury when he was 32 which left him disabled from the waist down. It forced him to take early retirement and he decided to go to DMU to study Journalism and pursue his passion for writing.   In 2016, while at DMU, Simon set up a Facebook Snowball Community with the idea of raising awareness of, and improving, disabled access. His award-winning campaign has had a global impact and the page now reaches more than 20 million people a month.    Simon is also an award winning film/documentary producer after his life story was brought by Amazon Prime and his film ‘Access All Areas' won 16 international film awards including best film.    Simon is also founder of Snowball Community a global disability app where you can leave reviews on how accessible a place is. Which is available on Android and Apple devices. The app has had 40,000 reviews in 12 months making it the biggest disability app in the world helping thousands of people daily.    Simon has won a number of major awards he is widely considered to be one of the most influential disabled people in the UK.   He was named in the top ten of the most influential people in the UK 2023 and this yeas won the Digital and Tech award at the Disability Power 100 and won the prestigious Santander X national award and will represent the UK at the Santander Global awards 2024.   Ways to connect with Simon:   https://www.facebook.com/FreezeSnowball   https://twitter.com/FreezemySnowbal   https://www.instagram.com/freezesnowball?igsh=MTl5ZHMxb3FvdzV1dA%3D%3D&utm_source=qr   https://www.tiktok.com/@snowball.community?_t=8jKD9oRZmPw&_r=1       About the Host:   Michael Hingson is a New York Times best-selling author, international lecturer, and Chief Vision Officer for accessiBe. Michael, blind since birth, survived the 9/11 attacks with the help of his guide dog Roselle. This story is the subject of his best-selling book, Thunder Dog.   Michael gives over 100 presentations around the world each year speaking to influential groups such as Exxon Mobile, AT&T, Federal Express, Scripps College, Rutgers University, Children's Hospital, and the American Red Cross just to name a few. He is Ambassador for the National Braille Literacy Campaign for the National Federation of the Blind and also serves as Ambassador for the American Humane Association's 2012 Hero Dog Awards.   https://michaelhingson.com https://www.facebook.com/michael.hingson.author.speaker/ https://twitter.com/mhingson https://www.youtube.com/user/mhingson https://www.linkedin.com/in/michaelhingson/   accessiBe Links https://accessibe.com/ https://www.youtube.com/c/accessiBe https://www.linkedin.com/company/accessibe/mycompany/   https://www.facebook.com/accessibe/       Thanks for listening!   Thanks so much for listening to our podcast! If you enjoyed this episode and think that others could benefit from listening, please share it using the social media buttons on this page. Do you have some feedback or questions about this episode? Leave a comment in the section below!   Subscribe to the podcast   If you would like to get automatic updates of new podcast episodes, you can subscribe to the podcast on Apple Podcasts or Stitcher. You can subscribe in your favorite podcast app. You can also support our podcast through our tip jar https://tips.pinecast.com/jar/unstoppable-mindset .   Leave us an Apple Podcasts review   Ratings and reviews from our listeners are extremely valuable to us and greatly appreciated. They help our podcast rank higher on Apple Podcasts, which exposes our show to more awesome listeners like you. If you have a minute, please leave an honest review on Apple Podcasts.       Transcription Notes:   Michael Hingson ** 00:00 Access Cast and accessiBe Initiative presents Unstoppable Mindset. The podcast where inclusion, diversity and the unexpected meet. Hi, I'm Michael Hingson, Chief Vision Officer for accessiBe and the author of the number one New York Times bestselling book, Thunder dog, the story of a blind man, his guide dog and the triumph of trust. Thanks for joining me on my podcast as we explore our own blinding fears of inclusion unacceptance and our resistance to change. We will discover the idea that no matter the situation, or the people we encounter, our own fears, and prejudices often are our strongest barriers to moving forward. The unstoppable mindset podcast is sponsored by accessiBe, that's a c c e s s i capital B e. Visit www.accessibe.com to learn how you can make your website accessible for persons with disabilities. And to help make the internet fully inclusive by the year 2025. Glad you dropped by we're happy to meet you and to have you here with us.   Michael Hingson ** 01:20 Well, hi there. This is your host, Mike Hingson, and you are listening to unstoppable mindset where inclusion, diversity and the unexpected meet. I love to say that every so often, but here we are once again, and now we are talking with Simon Sansome, who is over in England. So it is about 736 in the evening there, and it's 1136 where I am. So Simon, welcome to unstoppable mindset. Simon is a he's going to talk about snowball and I don't want to give that away. He also is a person with a disability. So again, welcome to unstoppable mindset. Thank you very much. It's   Simon Sansome ** 02:01 a pleasure to be here.   Michael Hingson ** 02:02 Now I am curious about something that just popped into my head. Do you all have daylight savings time over there that takes effect at some point? Yes, we   Simon Sansome ** 02:10 do. Yes.   Michael Hingson ** 02:12 When will that start?   Simon Sansome ** 02:13 No idea whatsoever. It just pops up on my iPhone and changes itself   02:17 these days. Yeah. Yeah. I   Simon Sansome ** 02:22 mean, best thing from working at home doesn't really affect me. Yeah, well, it's not like I lose an hour or gain an hour because I just stay in bed or get up, you know, get it when, when I need to. So, yeah,   Michael Hingson ** 02:33 now I'm just really curious. I'm gonna look at my calendar. I think,   02:39 I think it's April.   Michael Hingson ** 02:40 Is it all the way to April? Yeah, with Okay, over there, it's April. Well, here Daylight Savings Time begins. Oops, I'm sorry. Daylight Saving Time begins next Sunday. So you can tell we're recording this in advance of when it's going to actually go up everyone but daylight savings time here in the US, begins on March 10 so time Time flies. However, when you're having fun, I guess   Simon Sansome ** 03:13 there is a rumor over here that Daylight Savings Time was actually created by Benjamin Franklin so we could play golf in Scotland. Is that what it was, apparently so, but obviously we've got nothing to verify that, but that's the rumor. Well,   Michael Hingson ** 03:26 yeah, but it didn't get implemented all that soon. But you know, on the other hand, um, Benjamin Franklin is also one of the main characters in the new James Potter series, the outgrowth of the Harry Potter books. Oh, I didn't know that, because he is the Chancellor of Alma alaran, which is the American or US School of magic. So he's been around a while. This guy, Franklin, he's done a lot of stuff. But anyway, nevertheless, welcome to unstoppable mindset, and we're really glad that you're here. Why don't you start by telling us kind of about the early Simon growing up and some of those things. Yeah,   Simon Sansome ** 04:06 of course, I grew up in a village called burst in Leicestershire, that for most people, nobody knows where Leicestershire is. Everyone thinks of Nottingham when they think of Les share because it's the cloak, because of Robin Hood. So Nottingham Sherwood Forest is about 40 miles north of Lacher. However, we have become more famous over the recent years. We won the premiership in 2016 in Leicester City, which went was was a fantastic thing for the city. And then Richard the Third interesting fact, it was found under my car parking space. Dickie three. I was working for social services at the time, and Dickie three under my car parking space. So that was fun, I know, but no grew up in a normal house, Mum, three sisters, went to school, was dyslexic, wasn't diagnosed. I did terribly at school, great at cricket, loved the sport, played a bit of rugby and. And, yeah, just, I suppose really, you know, I worked. I worked all the like, Saturday jobs, and worked in a fruit and veg shop from the age of 14 to 16, getting up at four, four o'clock in the morning, going to work for a few hours, then going to school, falling asleep at school before Yeah, and then going to close the shop up at night. And I did that for one pound 25 an hour, which was, you know, child slave labor, yeah? So really, your average childhood, nothing really exciting going on there.   Michael Hingson ** 05:33 So did you ever go to Sherwood Forest?   Simon Sansome ** 05:35 Many times it's a nice walk. Yeah, is it we go on a regular basis due to the fact that it's you can hire a they're called trampers over here. It's a big mobility scooter, and so you can go around Sherwood Forest in the mobility scooter. So we'll get there quite a lot, because it's a nice outing. What   Michael Hingson ** 05:52 kind of trees?   Simon Sansome ** 05:55 Big oak, okay, big ones, yeah, willows, oaks and lots more. You know, it's a forest.   Michael Hingson ** 06:02 How big is? How big is the forest?   Simon Sansome ** 06:04 Absolutely no idea whatsoever. It's big. It's a forest. Yeah, you know, it's a good few miles across, a few, good few miles wide. You're going to get lost in it, if you if there wasn't a path, yeah, yeah. Well,   Michael Hingson ** 06:19 and it's nice that after all these years and all the reputation that it has, and Robin Hood hiding in it and living there, and all that, that it really does still stand and people honor it, which is cool. Yeah,   Simon Sansome ** 06:31 I the best thing about Robin Hood, Prince of Thieves, if you've seen it, he arrives in Dover on by sea, and then by night, he's walked to Nottingham, which is about 250 miles, he's fast,   Michael Hingson ** 06:47 and when you got to go after the sheriff, you know, you, you've got a mission, you got to do it,   Simon Sansome ** 06:51 yeah? So fat place Walker, him and him and Morgan Freeman,   Michael Hingson ** 06:57 well, my favorite movie is actually a slightly different one. It's called Robin in the seven hoods. Have you ever seen it is,   Simon Sansome ** 07:04 is that the, I don't know if, no, I'm thinking of Robin Hood, many types. Yeah,   Michael Hingson ** 07:09 Robin and the seven hoods, stars, well, the Rat Pack, basically. Okay, and so Bing, Crosby is no Frank Sinatra is Robbo. It takes place on the in Chicago during the gang times. So Frank Sinatra is Robbo. Dean Martin is John, or Little John. Bing Crosby was Friar, tuck and other people. Peter Falk was Guy Gisborne. Okay, you know, so they had all the characters. It was, it was really a cute movie. I've always loved to watch that movie. It's a lot of fun. So, and needless to say, it was a comedy and, and at the end, most everybody ends up behind, you know, in concrete. It in behind a wall, except for Friar Tuck who gets the girl? Fair enough. I think Robbo doesn't get walled up either, but it's a fun movie. But anyway, no Sherwood Forest. It's all on the south side of Chicago, okay. But anyway, so did you go to college? I   Simon Sansome ** 08:16 went to college and dropped out and then moved when? Because I just didn't get along college. Well, the thing is, because I had undiagnosed, I was undiagnosed dyslexic, yeah, in the like, you know, 80s and 90s, it wasn't really recognized as a thing, no. So I really couldn't really write until I was 1516, so I didn't go to what you would I went to a college. But the college isn't what colleges in America, or secondary rather than higher education. So we go, we go primary school, high school, college, university, okay? And so I went to, I went to Leicester college to did, what did I do there? It was film, I think, yeah, for about a year, dropped out and then got a job in Scotland, and moved Scotland just on a whim and became a training manager in a hotel. And the idea was, is I wasn't going to be rich, I but I thought, if I could be a waiter, if I can be a barman, if I can be the head of the departments in a hotel in the catering industry, then I've got a job for life. Yeah. So I've got a backup plan. So because once you've worked in a bar, in a restaurant, or you've been a chambermaid, which I've done, or kitchen shoe chef, or whatever, you know, you can pretty much walk into any job anywhere, and just, you know, you're always going to have a job if you need to, you can find things. Yeah, yes, absolutely. And that was the plan, because I didn't have an education behind   Michael Hingson ** 09:39 me. And then, and I'm amazed at the number of people, and I shouldn't be, because I understand the history who happened to have dyslexia or who were on, what we would say now is on the autism spectrum, who were never diagnosed. I've talked to a number of people here on on stop. Mindset who talked about the fact that they were autistic and didn't even know it until they were in their 30s or even 40s, and it was very freeing to figure it out, because they knew they were different, but they didn't understand what what was really going on with them, and then in the last 15 or 20 years, they finally got enough of a diagnosis, a lot of information. So they, oftentimes, they figured it out even before the medical profession did.   Simon Sansome ** 10:37 Yeah, same thing that happened with me. It was late diagnosis, yeah. So, so after Scotland, I moved back down to moving with my sister to help her out, because she had a child, and she was struggling. She was single mother. And so I got a job working at British Gas in Leicester, which is in the call center, and I got and after a painstaking working a nine to five job in a call center, thought, I don't want to do this for the rest of my life. Yeah. So I returned to education. And I returned to Loughborough College, which is up the road, and my then teacher, my sociology teacher, after handing in my first assignment as a mature student, she went, right, you're dyslexic, have an assessment. And that's when it really Yeah, and that's when it changed. That's when everything changed for me.   Michael Hingson ** 11:28 So what changed and why did it? Well, I can understand why, after the diagnosis,   Simon Sansome ** 11:33 I got the support I needed, that I didn't that I didn't realize myself, that I needed so kind of support, extra reading lessons, extra tuition, how to read and write, how to spell, very patient teachers, and a lot more encouragement as well from the college, which then helped me go on to university as well. So yeah, so   Michael Hingson ** 11:57 your your teachers helped you teach your brain to connect and be able to eventually really recognize, yes, so   Simon Sansome ** 12:07 I learned very visually. I can't really read. Can't really read very well. However, I'm an excellent writer, which is ironic. And I was writing everything and everything because I enjoyed writing so much. But I couldn't read software. I couldn't read out loud. And if I would read, sit there and reading your book, I would have, I call them brain farts, but their memory lapses or something, where you can read a whole page, or three or four pages of a book, and you can read it absolutely fine, but I've got no idea what's happened in those three pages, the information just doesn't   Michael Hingson ** 12:42 stay there. Yeah, the disconnect is still pretty strong. Yes, very much. So,   Simon Sansome ** 12:47 so I learn visually. So I was, I mean, back in the day, I was a huge film fan, and that explains the reason why. Yeah,   Michael Hingson ** 12:53 but, but you could write so you could, you could communicate. And whether, whether you, I assume, probably more often than not you, you wrote via a keyboard. Yep,   Simon Sansome ** 13:05 very much. So I also used the dragon talk back in the day, yeah,   Michael Hingson ** 13:09 but you don't. How did you do with like, writing with a pen or a pencil? No, I Yeah, no, I can do that quite well. You can do that quite well as well. Yeah, yeah.   Simon Sansome ** 13:18 I kept my journal as well. I kept a diary, yeah, just because it helped me to write. So   Michael Hingson ** 13:24 do you still use Dragon? No,   Simon Sansome ** 13:27 no, God, no. It's atrocious. I don't I haven't used it for about 15 years, so I don't know where it is now. Oh   Michael Hingson ** 13:34 gosh, it it is incredibly much better than it used to be when it was dragon. Dictate. Now it's Dragon Naturally Speaking, I use it a lot, and when I discover it has mispronounced, I can read or not mispronounce, but misrecognized or misinterpreted, I can correct it, and it doesn't take much in the way of corrections. But Dragon is so much better than it used to be. Yes, I use Dragon Professional and and I do type a lot and compose a lot, but I also find when I'm doing something that takes a while to do because it's long, it's much better to use Dragon to do it.   Simon Sansome ** 14:18 Yes, No, I never really got along with Dragon. I used it, but a big fan of it. But however, the dictation on my Mac and my phone is absolutely perfect for me. We'll come to it shortly. But I'm a journalist as well now, and so I can write a story within 10 minutes, 500 or 1000 words within a few minutes. It's great, and   Michael Hingson ** 14:40 you would find that that Dragon has that same level of accuracy, because I think a lot of the algorithms went from Dragon to other technologies, or the other way around. But Dragon is really great today.   14:55 Yeah,   Michael Hingson ** 14:56 so, you know, I can't, I can't complain a lot about Dragon. And it really does help a great deal. It's a whole lot cheaper than it used to be, but that's another story. You know, of course, the original Kurzweil Reading Machine for the blind that read print out loud by being able to look at a page and recognize the characters. The original Ray Kurzweil machine was $50,000 and now you get free OCR on an iPhone or an Android device or or very inexpensive anyway, and optical character recognition is a common place kind of thing anyway. So yes, lot different than it used to be. The world does progress and move forward. It certainly does so you did eventually go to university. What did you do there?   Simon Sansome ** 15:41 Yeah, so the first time I went to university. So I went twice, I did criminology. Oh, wow. Because I was enjoying writing so much, I thought I'd like to be a crime writer. What a waste of the time. If you want to learn about crime, you don't go and do you don't go and do criminology at university. So because it was so boring and so dull, I dropped out after the second year again. I mean, I was doing okay. I was getting about 50s, you know, so, two, two ish at university, but I really wasn't enjoying it, and I wasn't putting any effort into it. And so, yeah, I dropped out and looked for a job and went to work for the council. So   Michael Hingson ** 16:27 the council being so,   Simon Sansome ** 16:29 I worked for the local authority. Left City Council. Okay, yeah, the city council. Okay, great, okay, yes. So I,   Michael Hingson ** 16:36 I that was different. It was,   Simon Sansome ** 16:39 it was, it was very interesting, because I wasn't enjoying university, that was the thing, and so   Michael Hingson ** 16:46 and so you decided to leave criminology at the university and go look at the criminals of the council, right?   Simon Sansome ** 16:51 Pretty much. Yeah, I started off in housing. I worked as a housing assistant for a couple of years, working up there, and then, after a number of years getting a bit of experience under about doing some volunteering for youth services, um, I moved on to social services. And I was there till I left the council. And that was, that was an education. I did that for about eight years. And so, yeah, that and nothing prepares you for working for social services, going to see people intimate house you know, into their homes, their immediate environments, how people live, the poverty, the destruction, the drugs, the deaths you know, every you know, everyone's everyday life that you take for granted. And it certainly was an eye opening experience and a very worthwhile life education,   Michael Hingson ** 17:43 yeah, at the same Yeah, it is a great education at the same time, when you do it and you care, you are also hopefully able to help people and make a difference, even if it's with one life that   Simon Sansome ** 17:56 was the intention. So our specializing in adult mental health and physical disabilities by the time I left, and what you see every day is you try and get some positives from it, because you are saving lives and you're trying to make people safe, and that's your job. And at the end of the day, you get people who just don't care and just want to die and kill themselves. And yeah, it's people dying on you every day, especially if you come to the hospitals, that's interesting. I didn't I got transferred to one of the hospitals here in Leicestershire and but even before I had a case or went to see went to see a patient, to get them discharged from hospital, I had like, nine deaths on my table, wow. And so I got transferred back, just in case I thought I was killing people, even I hadn't seen anyone.   Michael Hingson ** 18:46 So did, do you think you ever really did make a positive difference to any of those people who were really losing hope, or who had lost hope? Were you? Were you able to help?   Simon Sansome ** 18:55 I mean, the thing is, is because you're the first point of call, so I was on effectively, emergency call outs. So you go and make sure that person is safe, you make sure they've got food, make sure they're okay, and then you pass it on to a long term team. So mine was the emergency intermediary department, like working with the police, ambulance service, firemen and so on and so forth. We would do joint visits. And so I really never got to see the long term effects. I was there to put the plan in place and then let a longer term, longer team, manage that person and the cash plan, or whatever was needed. So well,   Michael Hingson ** 19:31 it's a it is a process, no doubt. So when did, when did you leave the council? What year was that   Simon Sansome ** 19:39 that was? When was that that was 2015   Michael Hingson ** 19:42 Oh, okay, well, yeah. And then what did you go do? Because at some point after that, your life changed.   Simon Sansome ** 19:48 My life changed. So it actually changed while I was working for the council. Um, so I became disabled in 2014 um. So I we're not 100% sure how the injury happened. I'll explain. So I was doing Ruby training at Victoria Park during that week, and I we also had a ton of bark delivered to our driveway because our driveway needed doing. And so I have this I slipped a disc, and I don't know if it's from the or it's from playing with me that I don't know, or rugby training anyway, not from cricket, not from Cricket. No, I have played cricket for a while, since then I played it as   Michael Hingson ** 20:30 a lad. Cricket is very slow. Oh, cricket's amazing   Simon Sansome ** 20:34 you. It's more technical than baseball. Yeah,   Michael Hingson ** 20:37 I know. I understand. I When I visited New Zealand and listened to some cricket on the radio, and it was really hard to follow because it it generally does move pretty slow, so I know it's very technical, and I never really caught on to the rules. I did figure out rugby a lot more than than I was able to figure out rugby   Simon Sansome ** 20:58 is 80 minutes. I mean, cricket lasts for five days. It's beautiful. Yeah, I   Michael Hingson ** 21:02 understand, but you have to take the time to really learn the rules. And I didn't have enough time to really listen to the radio, I guess   Simon Sansome ** 21:11 that's right. Anyway, yeah, so I had a slip disc. I've had a slip disc before, and normally I would take some ibuprofen, do my exercises, try and pop it back in. On this occasion, me and Kate, my new wife, we were going away on a honeymoon to Mexico, and so I went to see a chiropractor in the local area. And it was doing well, you know, I was getting better. I was exercising. What I was walking further. It was had I took a few weeks off work because it was really very uncomfortable, and couldn't really visit people in their homes when I'm really uncomfortable. However, on the fifth or sixth visit, this newly trained chiropractor decided she was going to have a go at putting the disc back in for my honeymoon, and she crushed levels three, four and five of my spine while doing that, and that hurt. I screamed. I didn't know what she did. I thought she slipped. I thought she she could. She warned me it was going to hurt, yeah, and it did. It really did okay. And I after I couldn't get my shoes on, so she was on. So she helped me get my shoes on, and effectively, she just threw me out after I screamed. I think she knew something that had gone wrong. I didn't know at the time. I just thought she put my disc back in because I was in so much pain. I collapsed outside where Kate was waiting for me in the car. And I went home and said, Look, I'm just going to go to bed. I'll sleep it off. And the following morning, I woke up, I thought I had a stroke because I had no sensation from the waist down. Yeah,   Michael Hingson ** 22:50 yeah. My wife was a t3 para, so it was basically from the bottom of the breast down. But I understand exactly what you're saying,   Simon Sansome ** 22:59 yeah. So it was a very unusual situation. I didn't know what to do. Kate had gone to work that morning. We lived in a cul de sac, a dead end road for you and me.   Michael Hingson ** 23:10 Nope, no cul de sacs. Very well, that's okay,   Simon Sansome ** 23:14 okay, that's fine. I wasn't too sure on the terminology for the American audience.   Michael Hingson ** 23:18 It's it's a term over here, too cool,   Simon Sansome ** 23:21 excellent. And so I was shouting for assistance. There's nobody there. I didn't have my phone on me. Phone was downstairs, and so I threw myself out of bed, did an army crawl, threw myself down the stairs, but naked, and I don't really remember a lot after that. I don't mean apparently my mom came round. Apparently, the ambulance came round. But I you know, but I don't remember a lot what happened. I really don't. What I know is, when I was taken to hospital, I had an MRI. Don't remember the MRI at all. Obviously, I'm under painkillers at this time, and there's a lot going on, and I'm in shock because I'm paralyzed from the waist down. And yeah, they they did an MRI. The emergency doctor said it was cordial. Quite a syndrome. Cordiaquinas syndrome is fully recoverable if you get an operation within 2448 hours. However, for whatever reason, and we still don't know the answer to this, the consultant overall, the A and E doctor, and said, It's not cordial Corona syndrome, and they put me on the ward for three months not knowing what to do with me, because they didn't know what was wrong with me. And by the time the by that time, the damage had been doing. Needed to do it within a 48 hour window to stop any permanent damage. But no, they left me there, and I was unfortunately left there to rot for three months. The damage had been done, and then I was paralyzed from the waist down for forever. I still, you know, I'm a wheelchair, full time wheelchair user. Now I. Yeah,   Michael Hingson ** 25:00 yeah. By then it was irreversible and there was nothing you could do. Yeah,   Simon Sansome ** 25:04 very much. So,   Michael Hingson ** 25:06 so as a paraplegics, can you? Can you now? Well, I've summoned that. You then went through some sort of physical therapy and strengthening and so on. Yeah,   Simon Sansome ** 25:17 absolutely. So I went through physio for a while. I mean, some of it has come back. Some of it did come back for a while. They said you probably going to get better for a while, but then it's going to deteriorate again. So the point where the first, after a year, I could walk, you know, 200 meters, maybe, with a walking stick and a frame. So I was getting out, you know, I could walk slightly. I could, you know, so that wasn't too bad, okay, however, then I got a drop foot, so that went so I couldn't really walk anywhere, because I got no balance. And then the other Association went to my legs, so I got to a point where I could walk slightly, a little, and then it started disappearing over the years. It's been 10 years now. So now I've while I've got about, in my right leg, I'd say about, ooh, 10% sensation. But my drop foot, there's nothing at all. Can't feel it, so you can drop it off, I wouldn't notice. And in my left leg, I've probably got about 10% usage. So I can move my legs, I just can't feel anything, and then my bowels and bladder have gone as well. So I've got a self catchpherized and stuff as well.   Michael Hingson ** 26:25 Yeah, which? Which my wife always had to do. She was born with scar tissue on her spinal cord, so she's always been that way. We always been apparent. So obviously huge difference in your lifestyle going forward. And how did you cope with all that? What did you do? What did you decide to do? Because you strike me as a person who isn't going to let a lot row of grass grow under your feet, as it were. Well, I   Simon Sansome ** 26:55 mean, we didn't know. Wow, this is the thing. We were stuck because I couldn't work, okay? And work made me take ill health retirement. They didn't want me back at work. Even though I didn't want to do that, I was forced to take ill health retirement at 32 we me and Kate. This is where me and Kate were very sensible. Is because Kate was earning a good wage, I was earning a good wage, and we brought the house. That was in case any of any of us lost our jobs, we could still afford the mortgage and the bills. Okay, wouldn't leave us with a lot of money, but we could just, we wouldn't lose the house, right? So if we, if we brought a huge because we had a nice three bed, semi detached, it was a really nice house, but it we could have Afford a House shovel the size, but if we did that, we'd be really stretching ourselves. So because we were sensible. That gave me the option to go and we needed to cover the mortgage effectively, because the bills were the bills and the mortgage were effectively case wage, and so we didn't have really any money to live on. You know, we're talking about 2030, pound a week after all, the bills will come out and the mortgage. So I decided that I was going to return to university to retrain, um, after pretty much the day afterwards. Uh, let's let city council told me how to take ill health retirement, and I applied to university to check do a journalism because I enjoyed   Michael Hingson ** 28:14 writing. Did the health retirement then give you some income,   Simon Sansome ** 28:18 very little. It was 134 pound a month. And it still is about, I think it's going to be up to inflation, like 150 pound a month. I get it after life, not much. Yeah, absolutely. Because, you know, I was 32 there's no money in the park for the ill health retirement, yeah. But what would happen is, is it would give us time to sort things out, and the student loan would cover any food bills, or, you know, anything we needed for that for three years. So it gives us a little leeway. So it gives us a little bit of an income. It takes the pressure off Kate and so I returned to university to train as a journalist, and that's again where everything starts to change again. So,   Michael Hingson ** 29:04 but you could write, so there you go, yeah,   Simon Sansome ** 29:07 um, couldn't spell. It still can't spell, but I could tell a story, yeah, so I can get it checked by Kate or my mom or whoever. So, yeah, it's, it was interesting. So yeah, I got accepted. And I was twice the age of everyone else there, which was a little bit embarrassing, but I didn't really care. I was more mates with I'm still in contact with them. Actually, I'm still, and this is like 2000 what, 15 until 18 I graduated. Yeah, I'm still in contact on Facebook and stuff with all my lecturers, not the people I went to university with, because, yeah, but all lecturers I'm still in contact with.   Michael Hingson ** 29:46 So, you know, I want to come back and continue the story, but now I'm a little bit curious. Given the way things work over here, a lot of times, somebody clearly made them a. Stake in terms of dealing with your diagnosis and so on. Did you ever think about any kind of litigation or going after them legally and looking for funds that way, or anything like that?   Simon Sansome ** 30:11 We had to. Never sued anyone in my life. Never wanted to. Yeah, but we're getting to the point where I you know, wheelchairs are expensive. Equipment's getting expensive. Mobility scooters are expensive. We need an adapted vehicle, brooches, medication. We need carers. We need, you know, personal help with personal care, adding confidence power, which was really expensive, and so we didn't realize at the time how expensive having a disability was. So we got to the point where we had to take legal action. And we saw a lawyer, we got recommended one, and after five years, they settled. They didn't go, he didn't go to court. And so that was put in a trust for my protection. Yeah, yeah, because I am going to deteriorate later in life, and the cost of that is going to be extortionate, so that is well protected. So yeah,   Michael Hingson ** 31:16 yeah, it's unfortunate you have to do that sometimes my involvement in litigation was that I was thrown off of an airplane because of my guide dog, and we, we sued, we eventually settled years ago. Was back in the early 1980s it's an education to go through the process, and it did go to court. There was eventually a settlement. But it was even really hard to get a good jury, because some of the original people who were potential jurors worked for airlines, or new people who worked for airlines, and so they said they'd be prejudiced, and it didn't matter that a blind person with a guide dog was ejected from an airplane simply because of the dog. Yeah, of course, today that that couldn't happen, well, it could happen, but it would. It can. He   Simon Sansome ** 32:10 still does. It does. It   Michael Hingson ** 32:11 does and but the laws are, are more substantive, but even so, it lawsuits are, are really not an easy thing at all, and there's a lot of emotion that goes into it, and there's a lot that one has to decide they want to put up with. And you don't really know a lot about that until you're in the middle of it, unless somebody really sits you down and describes this is what's going to happen. I had a little bit of that, but I know how difficult it is to do people have told me I should sue the hospital that put me in an incubator when I was born prematurely, simply because that could cause blindness. And other people have actually sued successfully 20 and 30 years after they were born, they litigated, and I just felt, look, medical science had already started to be told that a pure oxygen environment could lead to what at that time was called retrolateral fibroplasia, which is now retinopathy or prematurity. But I think 2030, and 40 years later, suing doesn't accomplish anything and and so my parents and I talked about it a lot, and we all agreed that that doesn't make any sense to do, and we didn't, and I have no regrets about that, but your situation is significantly different than that. Yeah,   Simon Sansome ** 33:44 we had to move house. We had to double our mortgage. We couldn't stay in the house we were in at the time. And yeah, it was, it was a painful experience. So yeah, we needed, we needed an adaptive property at the end of the day, and we simply couldn't afford one. So you found   Michael Hingson ** 34:03 one, or did you build one? Or so   Simon Sansome ** 34:07 we couldn't find one. We actually brought one off plan, but we had to double our mortgage to do it. Yeah, that was interesting. So that wasn't pleasant, pleasurable at all, but we managed it. So   Michael Hingson ** 34:20 we had instances where we built a house from scratch. First one was a manufactured home, and then we we moved to New Jersey in 1996 and we built a house there because we couldn't find a house that we could relatively easily modify. And if you modify a home, the cost is so expensive because you've got to redo doors, you've got to redo counters, you've got to redo a lot of things. That's assuming you can find one that doesn't have too many stairs for a person in a chair, and that you can can ramp those but. If you build a home, there's really no additional cost other than the cost that we had in New Jersey, because it was in an area where they only had two story homes, so we did have to put an elevator in. So that was an additional cost, but that was the only additional cost, because, as you're pointing out, everything else was on plan and you you design it in, there's no additional cost for building lower counters if you're doing it from the outset. So we did that. But then when we moved to we moved back to California, we couldn't find a place to build, and so then we did have to modify a home and it and the problem is that you can't really put it in the mortgage, and it's a little different today than it was when we moved back out here in 2002 but we couldn't put it in the mortgage, so it was $150,000 that we had to find. And eventually it it worked out as you, as you pointed out with like with you. Then we moved here to Southern California. We built this home, and I am, I'm very glad that we did. It's, it's a great house.   Simon Sansome ** 36:05 Yeah, we've got a lovely home now. It's fully adapted. It's great, you know, it's large. I can get around quite easily. So it's a it's very nice,   Michael Hingson ** 36:14 all one floor,   Simon Sansome ** 36:17 all one floor. Yeah, it's extremely long.   Michael Hingson ** 36:19 There you go. Well, so you went back to university and and clearly that was a major commitment and dedication on your part to decide to do that, but you didn't. What was the university like? How accessible was the university?   Simon Sansome ** 36:36 Oh, it wasn't accessible at all for me. So I had a manual hospital, manual wheelchair. At the time, I couldn't push myself around because of my spinal damage and the spinal damage that I've got. I can't really push myself well in a manual wheelchair, right? And we didn't have any money for a scooter, so the first year, I was really struggling because we didn't know what services we didn't know what services we could access. We didn't know what was available. I'm newly disabled. I'm new to this world, even my work for social services, and until you're sitting in the chair, what you know about the world is absolutely nothing. And so it wasn't until I came across Disability Services at the University who helped me apply for a grant with the snow interest in the UK, and they provided me with an electric scooter. Well, that was brilliant. I mean, oh my god, yeah, it's like I found freedom. Because obviously, you know, so my university is called, my university is called Democrat University. And although it's not on a hill by any means whatsoever. There is a slope going all the way down to the main campus. And it's quite, it's quite a long road, but the slope is very subtle school it helps, yeah, but if you're pushing yourself in a manual wheelchair up that slope, by the time you get to the main road, you're absolutely exhausted. You just can't push yourself anymore. Yeah, and it's about, it's about a quarter mile along the whole campus. And so, yeah, I was pushing myself backwards with my foot on the floor up the hill to get the classes and stuff. And I just said, This is ridiculous. This can't carry on. And so I spoke to Disability Services, and they helped me out. So,   Michael Hingson ** 38:16 so what did you do once you So you went to the university, you you did that, and you were committed to making it happen and and there, there had to be times that they would have been tempting to give up, but you didn't. No,   Simon Sansome ** 38:30 I wasn't really tempted to get up. I mean, I have side effects from my corticoana syndrome. I have, like, seizures in the legs, which can happen anytime, and that causes that knocked me out for a few days. Yeah, so I did get a few medical exemptions here or there, but, you know, the the lecturers were more than happy knowing that I was capable of doing the work, yeah, which is cool. Yes, very much so. But I did have to have a couple of exemptions here or there, but nothing major. But while I was at university, that's when I set up the Facebook page, which is now known as snowball community, and that's what brings us to it. So, right, yeah,   Michael Hingson ** 39:05 so tell us all about snowball and yeah, and everybody should know that I teased at the very beginning. I said, Well, now isn't it time that we should remember that snowball was the name of the pig in Animal Farm. And Simon's not read Animal Farm, so I   Simon Sansome ** 39:24 got red Animal Farm can't read, sorry.   Michael Hingson ** 39:27 Well, go listen to it. Then, you know, it's not that long on the book. It's not that long.   Simon Sansome ** 39:33 No. So when, when, after a year of recovery, when I was going to university, so I went. So we were going out for a meal. It was the first meal me and my wife went out following the injury, okay? And there's a really nice place in Leicester, Spanish tapas, and it was the first time out in the wheelchair for a meal, and we couldn't get in. Okay? We called up and the wheelchair wouldn't go through the door. There was a step. At the front. And they're like, can you step over? That went, No, not really. But what happened was, as well, they put a table in front of the disabled entrance as well. Oh, that was good. Yeah, they had a ramp that went into the road, so that was interesting. And then the disabled toilet was upstairs, and so it was an emitted, a mitigated disaster. It really was atrocious. And this, and we didn't know this, we know I've never paid attention to say what access, you know, it just something we'd never, you know, I've never really been in a wheelchair before, so why? Why would I, yeah, yeah, and only if   Michael Hingson ** 40:42 you took an interest, but most people wouldn't think of that, yeah, yeah, exactly understandable. So   Simon Sansome ** 40:48 yeah, we just thought, you know, what else can we not get into? And it turns out quite a lot. And so a couple of days later, I decided to set up a Facebook page. It was called Ability access. Back then. It's now, of course, now being rebranded snowball community. And you know, all it was, it wasn't anything special. It was a very simple Facebook page, and it was to raise awareness of disabled access in the Leicester area. That's all I wanted to do. I didn't want awards. I didn't want recognition. I didn't want any of that. But however, within like, I think it kind of triggered something in people. It's not mold. It snowballed. Yeah, exactly. And I'm not too sure why or how, but I started putting a post of pictures of things, of places I couldn't get into, and videos, and, you know, me being angry, and so on and so forth. And, you know, within a like, within a month, I had 1000 followers. You know, they went to 2005 1000. And just kept on growing and growing and growing. Then we got nominated for many the page got nominated for awards. He started winning awards. And that's when I, at the time, I decided I was going to create something, if I could, called snowball community, which was an app. I had the idea of a disability app, but I'll come to that in a second. And yeah, it just, it just would not stop growing at the moment, I think it's about 110,000 followers on social media, and in 2019 it became the most read disability page in the world because people sharing videos, people sharing stories. You know, we were reaching an audience of over 30 million people a month. At one point, it just got absolutely crazy. And I just mean, I couldn't carry on doing that. I mean that took a lot of time, that took a lot of effort. And we just said, Look, we can do something with this. We can use the audience we've got. We've got an audience who follows it on a regular basis, who comments on a regular basis. And I said to Kate, we could do something really special here. And so I just Yeah. Once I graduated in 2018 I graduated from university with, again, a two one with honors in journalism, and I was working as a freelance journalist as well, which is great. It's because I could work whenever I like, but really, ability access would now snowball, just started to take over my life on the social media pages. And I said, Look, we could design an app here and create an accessibility app, and it took years of design to try and get it right. It really did. We took, we took, we did consultations, but also we couldn't afford it at the time either. We had to raise money for it as well. That's quite hard. And so, no, it's at the moment. Snowball was launched last year, and we are looking to get 100 that it's won national awards. It's one we came back from Barcelona last week. Okay? It won funding at a global award ceremony. And it's really snowballing. It's, we're expecting 100,000 reviews on the app this year.   Michael Hingson ** 44:04 So do you? So have you created an actual nonprofit organization out of it, like snowball.org or anything like that?   Simon Sansome ** 44:15 No, I really wanted to. I wanted it to be a charity organization. Yeah. And the reason I wanted it to be a charity organization, because I had assistance from a charity organization in the UK while at university, however, um, here in the UK, there are very strict rules and regulations on what you can spend the money on if you're a charity. And I wanted to set up a fund to help students who have disabilities at university, so I can do that. But also, I wanted to give 10% of the profits to local businesses who can't afford to do their own adaptations. We're talking small businesses, coffee shops, you know, local cafes, bakers and butchers and so on and so forth, fruit and veg shops who simply haven't got the 1015 grand what's required to make their stores excess. Possible. So I still, I'm still ever have every intention of doing that, but I couldn't do that as a charity organization. The rules and regulations wouldn't allow me to spend the money where I wanted to and where I thought thought, see if it where it's needed to do so for the communities across the UK. So I actually set it up as a limited company with the intention of probably 10% of the profit aside for local businesses to apply for grants when we start making money.   Michael Hingson ** 45:30 Yeah, well, but that is, I would still say that is exciting. You're, you're, you're channeling all of that, and hopefully you'll be able to do some major things to to help raise a lot of awareness. So what other kinds of things do you do to help raise awareness about disabilities and so on?   Simon Sansome ** 45:50 Yeah, so we're launching a number of profiles, at the moment, a number of things. So what we're doing is, I'm sure you have it in America as well with you, probably for your restaurants and pubs and everything you have, something similar to a food safety hygiene certificate. Yes, I'm not too sure what you call it. Over there, we have a certain similar thing here. It's a rating from one to five, okay? And we're launching something called the snowball membership scheme, and we're taking our 70 staff over the next few months to cover the whole of the UK. And what we're going to be doing is we're launching a scheme where businesses, whether it's Frankie and Benny subway McDonald's, can sign up to the system where we will go out and basically view a disability consultation for 250 quid and give you a full breakdown of what you can improve on your business, but also gives you an access rating that you can promote on social media and say, Look, come to our business. We are disabled friendly, yeah. But what that does is that creates a huge opportunity for businesses and the snowball app, because we are creating the biggest disability app in the world, and it tells you where you can it tells you where you can access, where you can go, okay, where you can eat, where you can shop, but also, more importantly, where you can spend your own money. And I was doing some research earlier today, before this interview. And according to one, I think the valuable 500 is the disabled community in America has $8 trillion of disposable income right to spend on things like restaurants and cinema tickets and so on and so forth, to cafes and, you know, clubs and shops and whatever, per year. So $8 trillion is going unspent because the disabled community in America, which is 60,000,060 1 million, I believe, don't know where to spend their money.   Michael Hingson ** 47:48 Well, when you think about the fact that it's the largest minority worldwide, you hear anything from 20 to 25% of all persons have some sort of disability. The The only, the biggest challenge that I see is the problem is that the disabilities aren't uniform. That is, it isn't the same. The needs that that you have, to a degree, are different than the needs that I have. The bottom line, however, is that even if you deal with it in that term that everyone has different kinds of disabilities. The fact of the matter is, it's still awareness. And while you need physical access to get into a restaurant, I need access to be able to to know what's on the menu and know what it's going to cost. And you don't have as much of a need for that, as I do, because you can lift a menu and read it in theory, but the fact is that we all have different challenges, and as I've said a couple of times on this podcast, we need to really redefine disability. First of all, disability doesn't mean a lack of ability at all. This isn't really the issue, because we do have terms like disciple, discrete, you know, they're not all negatives and and so disability is is really something different than what people have made it into. Disability is a characteristic that everyone has, and it manifests itself differently. I love to say that that the reality is, for most people, your disability is that you're light dependent, because most people don't do well in the dark, and they and Thomas Edison fixed it by inventing the light bulb, but it still is a disability, even if it's covered up, because most of the time you have light disability is a characteristic that everybody manifests. It's just that we do it in different ways.   Simon Sansome ** 49:44 No, I completely agree. I'm hoping that the system that I've created will address that. So, because what we've done as well is not, it's not just the question of, oh, we're going out there and is disabled friendly, is wheelchair accessible? We're doing. Know, full disability consultation on the business. So, do they have Braille menus? Do they have a change in place facility? You know, is there a lift? Is there Braille on the lift, that kind of thing, and so. And we're also introducing something called the stimulation rating as well. And this is touch, touch, taste, sight, see and spell. And this is to give you an indication of what those things are at that place for people with visual impairments, for mental health issues and learning disabilities. Because, for example, if you go to the British Library, very quiet, you know it's going to be quiet. Okay. If you go to the Natural History Museum in London, well, some days it's really nice and peaceful on other days, because you've got 10 school 10 coaches of school children, absolutely chaotic. Okay, so it does vary considerably. And the whole idea is, is, while it's not a perfect rating system, because, like you said, there are so many different types of disability, not every disability is the same. Yours is different to mine. We're trying to incorporate a holistic approach to making sure that people feel comfortable going there, because they can relate to something that's on the assessment, and they can see what's there, so they get the full report, and therefore they can have an individual, independent, independent, independent decision on whether that place is suitable for them. So it's not a perfect system where it can be changed quite easily through feedback. It can be improved through feedback. It's like a moving model at the moment. It's like 16 pages long the assessment. But hopefully it will with the feedback we're getting and how it will grow. It will hopefully evolve into something absolutely fantastic for everyone to be inclusive everywhere.   Michael Hingson ** 51:42 Well, and that's a cool thing, clearly, to do. One of the things that I know well is that you and I were introduced by Sheldon Lewis at accessibe. Sheldon is in the nonprofit part of accessibe in helping to find places that need Internet access and who are nonprofits, especially in the disability world, and helps provide accessibe for that. And I don't know whether you all are doing much yet with accessibe, but clearly it's a great place to get involvement in the whole issue of internet website access is is a horrible thing. I mean, we have so many websites being created every minute, and the reality is that none of the major internet website building companies, including Microsoft and Google, do nothing to insist that for website is being built, it has to be accessible right from the outset. So, you know, accessibe is a great, inexpensive way to help with all that, and I'm assuming that Sheldon and you are working on that somewhat.   Simon Sansome ** 52:54 Yes, we are. We've had a discussion, and unfortunately, accessibe isn't available on apps at the moment, but that is something they're working on, and you introduce it soon. So I'm, I think once it's available on the apps, I will after, course,   Michael Hingson ** 53:07 but it is, however, the reality is that restaurants and other places do create websites, and people go to websites, and so that's, that's right now, the place where accessibe can make a significant difference.   Simon Sansome ** 53:22 Absolutely, I completely agree they should have it on there. Yeah. So   Michael Hingson ** 53:26 that is, that is a that is certainly one place where, you know, we can help. And certainly every restaurant should have an accessible website and and if they're going to have menus on the website, then there are certainly guidelines on ways to make those accessible, and that is part of what needs to be done.   Simon Sansome ** 53:46 Yes, and I completely agree with you. I support it, of course,   Michael Hingson ** 53:50 yeah. And you're right, apps, apps today, that's a different process. It's a different animal, but it will come, and that'll be something that that we'll be able to see. But in the short term,   Simon Sansome ** 54:02 yeah, I've told Sheldon, straight away, we'll get it on there straight away, as soon as soon as they've done the development for the apps, for access to be   Michael Hingson ** 54:09 Yeah, but right now, well, okay, but right now for your app, it could be accessible. You just build it that way, but it's not the app. But every restaurant should have an accessible website, and that really ought to be part of what you look at when you're going to a restaurant, to explore what and how accessible they are. Having accessible and inclusive websites is certainly something that is very straightforward to do today. Yes,   Simon Sansome ** 54:38 it is, but businesses are lazy   Michael Hingson ** 54:42 well, but you know, they also that they are, but they also think that it's more expensive than it needs to be, and that's part of the whole issue. I mean, if you go to a restaurant and it's not accessible because you can't get into it, so they're still lazy. They didn't make it. Accessible right from the outset, and either they're going to where they're not, and it's a lot No no, no offense in any way intended, but it's a lot less expensive to make a website accessible than it is to modify an entrance so that you can get in with a wheelchair when there are steps or a very narrow door. Yeah. So it is yeah, laziness goes always Yeah. And   Simon Sansome ** 55:23 hopefully, if they do have initiatives that hopefully snowball, can help me out with that, with the credit that we want to provide to small businesses, yeah,   Michael Hingson ** 55:30 yeah. And I understand that most businesses are pretty small and don't necessarily have a lot of money to spend, but with websites, that's where accessibe can make a big difference right from the outset? Yeah, absolutely, which is pretty cool. Yes. So what's, what's next as you go forward with snowball What are, what's the future going to hold?   Simon Sansome ** 55:52 Oh, my God, right. So, I mean, we're having a huge expansion, as I said, we're taking on about 70 staff to cover the whole of the UK. We're actually looking to franchise it as well across North America and Europe. We've also asked to be consultants for a number of governments as well. So it's going from strength to strength to strength. Every week, we keep on getting inquiries. We've got customers signed up already for the assessments, for the membership schemes. Loads in London. London's really taking off quite nicely. So it's where we're going at the moment is, I don't know, but in a couple of years time, I think we're going to be a major player in the app world for accessibility, because we already are the most that we are the biggest disability app in the world at the moment. Mm, hmm. By a long, long way, by, you know, 10s of 1000s of reviews. So nobody's really going to catch up with snowball, but we still need people to use it on a regular basis. That's the thing, because all the information we get is usually generated. Okay, in the UK, we're doing really well. In America, we need a bit more help. Yeah, but, you know, I was having a I was doing another podcast a couple of weeks ago in America, and there's a chap who wants to give us 10,000 locations of petrol stations across America where they went, because he doesn't know where to post it. All this information on accessible fueling stations across America, where they'll come out and help you to fill yes and you to fill your yes and stuff, and do help to pay for it. And he's just got no idea where to post it. So parallel, we think he's going to get we will win early stages of talks, and he wants to give us that information to help people to travel across America, and so they know where they can go and get their car filled up with assistance. So it's just we need people like that to leave reviews, to add places to use it on a regular basis, even if you go, even if you spot a car, you know, disabled car parking bay, you can have that. If you find an accessible toilet, add the accessible toilet. If you find an accessible restaurant, add the restaurant. Even if you find an inaccessible restaurant, add the inaccessible restaurant, because it will stop people going there and being disappointed. So all that information is extremely relevant to help people to be live a more independent life. So we need as many people across the world, including America, to download to to add reviews like you would on TripAdvisor. Is TripAdvisor for the disabled community. We just need more reviews and more people to use on a regular basis, and it will grow considerably. And therefore, once that's grown, we can start helping people more with like booking cinema tickets, booking airline travel holidays, and expand it that way as well. Because once businesses know that you're booking it through snowball, then they know you need extra assistance. So Sheldon,   Michael Hingson ** 58:43 has Sheldon talked to you about access find? Uh, no, okay, access is again, right now, it's website oriented, but access find is a database that accessibe created of accessible websites, and any website can say, you know, we have, we have made our website accessible, and it's checked, but then, when it is, then they are included in access, find. And it might be interesting to explore that, both in terms of websites, but finding ways to expand it. So we can, we can explore that and talk about that one. So what? What motivates you? I mean, you're doing a lot. Why?   Simon Sansome ** 59:28 It's the frustration of not being able to so, I mean, yes, remember, I for 32 years, I was fully independent. I could go anywhere in the world. I wanted to Okay, and it's the frustration that the world is not I'm not going to say it's not welcoming, because it's not that's not quite right. I'm going to say uneducated. And the ignorance of that everyone can access everything after having an injury like mine is very small mindedness, and I get. Frustrated that, because I travel a lot for work. I travel all over the world, and when we turn up to places, you know, we haven't got the right room, we can't access the hotel, we can't access the restaurant. It's got to the point where we don't choose where we want to go the place chooses us, yeah, and I don't, I don't think that's fair, no. And so I just want an equal opportunity world. That's what I don't like being turned away from places where we want to go for a family meal. I don't like being turned away from the cinema because the disabled seats so close to the screen. You know, it's, you know, it's just It frustrates me. And that's what, you know. I think that's what keeps up, keeping me going, but also as well, is when I was in hospital, because I got told I would never sit up again. I got told I was going to be on my back for life. Okay? And I'm very fortunate where I am. I mean, I know that sounds really stupid, because I'm paralyzed from the waist down, but I am very fortunate where I am, and I see, especially from a social services point of view, there are so many more people worse off than I am okay, and I just want to help them as much as I can. I want to give them choice. I want to give them a bit of independence. I want them to have that freedom of not being restricted to, you know, five, five places to go and eat, or, you know, the only place you can go to the cinema. I want you to the only tourist attraction you can visit. I want them to be fully inclusive. I want them to have a good life, you know. And I think snowball can help a lot of people do that.   Michael Hingson ** 1:01:40 Well, that's cool. So if people want to learn more about Snowball or access the app and so on, how do they do that? And how do they reach out to you? Yeah,   Simon Sansome ** 1:01:50 I'm on LinkedIn. Simon Samson, just send me a message. That's not a problem at all. Spell, if you would please. Yeah, S A N for November, s o m for mother, E for Echo,   Michael Hingson ** 1:02:03 and first name Simon, s, i, m, o n,   Simon Sansome ** 1:02:05 that's correct. You can also, you can also email us at support at snowball dot community,

In this episode of IDD Health Matters, Dr. Craig Escudé welcomes Mary Brogan, the state director for developmental disability services in Hawaii. Mary shares her extensive experience managing programs that impact individuals with intellectual and developmental disabilities (IDD), including the oversight of the 1915(c) Medicaid Waiver and neurotrauma services. She highlights the unique challenges of providing dental care and the importance of accessible health services tailored to meet the needs of people with IDD in Hawaii. Mary and Dr. Escudé dive into the critical importance of person-centered practices and how a preventative, systematic approach to healthcare can vastly improve outcomes for individuals with IDD. They discuss the concept of “diagnostic overshadowing,” where medical professionals might attribute symptoms solely to a disability rather than exploring underlying health issues. By encouraging more training and awareness among health practitioners, Mary and Dr. Escudé advocate for a future where IDD patients receive the comprehensive care they deserve. The episode also highlights Mary's work with the National Association of State Directors of Developmental Disabilities Services (NASDDDS). She explains how the organization provides invaluable federal-level advocacy, technical support, and guidance to help state agencies better serve their communities. Reflecting on the collaboration during the COVID-19 pandemic, Mary shares her belief in the power of partnerships and the importance of balancing dedication to work with personal well-being.