Speaker 1 00:00:23 This is disability and progress. We bring you insights into ideas about and discussions on disability topics. My name is Sam. I'm the host of the show, Charlene dolls, my research team tonight, we're talking about Usher's syndrome. We are speaking with Trevor Turner. Trevor is a volunteer as an ambassador with the usher syndrome coalition. Hopefully I got that right, Trevor. What does an ambassador
Speaker 2 00:00:50 Embassador is assembly a volunteer person who has usher syndrome, or maybe as a parent of somebody who has a shoe syndrome who can represent and be a resource for people with usher syndrome in their state. So I volunteer Ignatia ambassador for the state of Minnesota.
Speaker 1 00:01:07 Excellent. We will get deeper into it, but can you give us a brief explanation of what usher syndrome is?
Speaker 2 00:01:14 Usher syndrome is a recessive genetic condition. That is a combination of hearing loss and progressive vision loss. Um, it's the progressive vision loss disorders also known as retinitis pigmentosa. Um, so can manifest without the hearing loss. So if it does not have the hearing loss, then it's simply retinitis, pigmentosa, retinitis, pigmentosa, or RP is combined with hearing loss, then, um, it can be usher syndrome, um, and there are three different types of usher syndrome, one, two, and three, and then they of course have some subtypes as well. Yeah.
Speaker 1 00:01:53 Okay. We'll get into that. Um, tell me, uh, about your story. So when and how did you find out that you had Astro syndrome?
Speaker 2 00:02:04 So I was born with a severe hearing loss. Um, I received my first pair of hearing aids, um, when I was two years old. And so I always had a disability in that always had a hearing loss. Um, I received 10 years of speech therapy as a child and really only thought that was my only disability. Um, however, when I was about 14 years old, as a teenager, I started noticing that my night vision was not as good as my family or my friends and I was struggling well at night when I weren't adjusting to the dark from, uh, from light to dark. And so it didn't seem too concerning. Um, I, you know, I went to, uh, an optometrist and they just said, it's just simple night vision loss. It's pretty common. Um, and like, okay, well, they're not what you can do about it, but I didn't think much of it until I started noticing as I got older, that it was getting worse and worse and worse until finally when I was 19, I went to an optometrist again and they referred me to a retina specialist.
Speaker 1 00:03:18 And by then,
Speaker 2 00:03:20 Um, I actually just gave up driving a year ago. So it's a, yeah, it's a complicated disorder in that regard, but, um, but I was driving and I would not typically, I would avoid driving at night, but with like the headlights and things, I still can see pretty well. And I felt comfortable driving. Um, you know, Dr. Copley would say, I shouldn't have been driving, but if, you know, you can only advocate for yourself and I always want to avoid driving at night at the time. Um, and it still was pretty, it wasn't as severe the vision loss wasn't as severe when I was 19. It just more of a new sense that it wasn't disability to me. Um, but when I went to the retina specialist, the doctor, the first thing that the doctor asked me about was my hearing, my hearing loss. And I was really confused by that because I didn't come in for my hearing. I know that, um, but she said, yeah, I think they're related. And that was the first time she mentioned usher syndrome. And that was the first time I ever heard of it. Um,
Speaker 1 00:04:32 It wasn't until you were well into your, I mean, you were in your adult life.
Speaker 2 00:04:37 Yeah. Yeah. I was 19 years old, so I was an adult before somebody even mentioned the word Astro syndrome to me. Um, and so then if that was just kind of a symptomatic diagnosis, um, so the, I went to another retina specialist. Um, that's the thing about rare diseases. A lot of times you get referred to a specialist specialists and they can take a while to get a formal diagnosis. But, um, I was formally diagnosed after doing vision testing and they did notice that my degree of vision loss in my visual field was, um, consistent with that of usher syndrome. Plus was my hearing. It was consistent with Usher's type two, which I know we'll talk more about. Um, but I, um, that was the first time. And then my vision continued to just slowly, it's very slow progressing disorder, but throughout my twenties just got a little bit worse and worse. And then it started going into my daytime vision as well. Um, and then when I was 25, I was about six years later after getting my first symptomatic diagnosis, they finally identified the gene and had genetic testing available. And so they did a genetic test and confirmed that I had <inaudible> and genetic disorder. Um,
Speaker 1 00:05:55 How did they, so is that the only way they really diagnose it? Because I mean, she kind of jumped to that. Thank you have usher syndrome. And certainly there's other things that can have deaf blind isn't there.
Speaker 2 00:06:09 Exactly. So that's why the genetic, the genetic testing is the only way to absolutely confirm that it's actually usher syndrome because there, it could be coincidental. I mean, you could have retinitis pigmentosa for hearing loss caused by, you know, whatever reasons. Um, so they may not actually be related, but that's pretty rare usher syndrome is that the, you know, the most common form of deaf blindness in the world,
Speaker 1 00:06:40 But even usher syndrome is somewhat where rare,
Speaker 2 00:06:43 Pretty rare.
Speaker 1 00:06:45 Is there a typical age that one is diagnosed at
Speaker 2 00:06:50 It's getting earlier and earlier, especially with genetic testing. Um, now I think it's pretty typical that any child with a hearing loss genetically tested, um, you know, I used to work for a hearing aid company here in Minnesota. So I got very familiar and I knew a lot about hearing loss and how it diagnosed. Um, you know, when I was born, you, it wasn't, you know, it was about two or five years old before you diagnose the hearing loss. And then typically it would be a teenager or even an adult. I mean, I've a lot of people my age, just find out they've had usher syndrome in their late twenties, early thirties. Um, so it's, but because of genetic testing and, um, just early intervention, they're able to find out quite early and they can find out when the baby is born at this point because they have identified the genes for all three types.
Speaker 1 00:07:43 Is there a gender preference with usher syndrome?
Speaker 2 00:07:48 Um, current research and prevalence would suggest that there isn't, it affects men and women the same.
Speaker 1 00:07:56 It's also, I believe called Helgren syndrome.
Speaker 2 00:08:01 Um, so usher syndrome is named after the researcher and the doctor who first discovered it and made the genetic con the hereditary connection. Um, and then how grand was actually someone who did a lot of significant research on usher syndrome. Um, however focused, mostly on type three, whereas usher syndrome is focused on all three types. And so that's why it's more commonly known as usher syndrome.
Speaker 1 00:08:29 Let's take just a short station break
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Speaker 1 00:12:28 Your team to cafe 90.3, FM Minneapolis, and kff.org. My name is Sam. This is disability and progress. You're speaking with Trevor Turner and talking about usher syndrome. So Trevor, you kind of gave a hint at the beginning. Let's talk about the three types of usher syndrome.
Speaker 2 00:12:48 So there are three types and each type has subtypes. Um, but I'll just broadly talk about the three, I mean, that's type one. So usher syndrome type one, uh, someone with type one would be born with a profound to deafness, um, total deafness of hearing loss. Um, and then they're retinitis pigmentosa or RP starts very early and is very quickly in their childhood. Probably be legally blind before they even become a teenager. Um, and then, uh, sh type two is somebody who was born with a moderate to severe hearing loss that doesn't change. Um, unlike <inaudible> it can does progress, but two you're typically are born with the severe hearing loss and it doesn't change throughout your life. It's pretty consistent. Um, and then the RP starts, uh, adolescents or, you know, about puberty or so, um, and that is very slow progressing as well. Um, like I said before, most people with type two, sometimes don't get diagnosed until their late twenties or early thirties because of how small progressing it is. Um, but, and then type three is the rarest form, but typically you're born with typically healthy hearing, healthy vision, and then you progressively lose your vision and progressively lose your hearing as well. And so that one is, like I said, it's rare, but it's of the three is the rarest, but it's a progressive for both hearing and vision,
Speaker 1 00:14:23 Is that one the longest to take, to lose hearing and vision type three
Speaker 2 00:14:29 Really dependent on the person. Um, however, I would say they're probably in their twenties or thirties before they, it becomes pretty significant where you're wearing hearing aids and, um, probably getting a cochlear implant, um, and needing to use a cane and have cane training for vision loss and things like that.
Speaker 1 00:14:50 My understanding there's a certain type that is more found in Jewish culture and Jewish people and Scandinavian maybe too.
Speaker 2 00:15:02 Yeah, that's the type three. That's the only, uh, the now I, that what the current research would suggest. Um, I wouldn't say that a lot of research has been heavily skewed toward people of European descent, um, doing more and more research. Uh, they're finding it to be more common in, you know, people of south Asian or Indian descent. They're starting to see it more in China and identifying it more in China. So the, a lot of the data it has that kind of bias around European, um, you know, centers of culture and study because of just typical bias and institutional racism and things like that. Um, so they're becoming more, you know, worldly, uh, identifiable and, and people noticed it more in different cultures and different among different races than people as well.
Speaker 1 00:15:54 Um, is it found more than sounds like it's far more kind of in white Caucasian, or do you feel a lot in other races too?
Speaker 2 00:16:04 It's PR right now it's primarily white people are identified and diagnosed with usher syndrome. But like I said before, I that's primarily because of just the research that has gone toward primarily studying people of Caucasian or white descent, um, but more and more research and now you're seeing it and then just American populations are seeing it and because it's south Asian and Asian, and I wouldn't be surprised if you saw it more common and, um, Subsaharan Africa as well.
Speaker 1 00:16:37 So I like the I've, I've worked with people with disabilities, including hearing disabilities, and I, I often can tell in regards to speech, but your sounds quite good. I, it feels like you, you slowly lost yours as far as, and maybe yours isn't total, obviously it's not a total hearing loss. Did you get cochlear implants?
Speaker 2 00:17:02 No. I've only relied on hearing aids. Um, you know, I had, I got hearing aids pretty early for somebody who's typically diagnosed with the hearing loss that I have. I've always had the hearing loss. I mean, when my first audio grams to now look very consistent. Um, but I received my first pair of hearing aids when I was two years old and then immediately went into speech therapy.
Speaker 1 00:17:25 I would that make a difference?
Speaker 2 00:17:27 Yeah. And I was reading and writing because reading and writing were a way to, you know, teach me how to speak and recognize sounds that I couldn't hear, but I can still visualize it. Um, like the letter S for example, I don't think I could hear the letter S until I was probably 10 years old when they introduced the hearing aids, but I knew of the concept of the S because they show me the letter and then they'd hold my hand up to their mouth, you know, and make that, you know, that his thing sound
Speaker 1 00:17:56 Right,
Speaker 2 00:17:58 That that letter exists. And that's what I need to do. Um, you know, a great example would be the different between the word desk and deck. You know, I, for the longest time cannot hear the difference, but I knew that no desk had an SNL. So I always made sure to say best in it. Um, but I just had very good speech therapy going out. Um, and like you said, early intervention with hearing aids. And so, um, I think that played a lot into it. My parents were very good about practicing reading and reading aloud to me all the time.
Speaker 1 00:18:31 Hmm, excellent. I had, um, a coworker that I thought was quite brilliant, um, a while back and he had usher syndrome and I, I, would've never been able to tell in his speech because it was quite good. And I think his hearing loss was not significant. He was probably, you know, close to 30. She was totally vision. His vision was totally gone, but he had seizures. I'm wondering, um, is that something that's common or is that just maybe unfortunately paired with something else?
Speaker 2 00:19:09 The current research doesn't associate seizures with as a symptom of usher started their own research needs still needs to be done, but it does have balance issues. So, um, type two typically does not have balance issues, but type one and type three can have balance, um, problems, you know, making it hard to balance because your inner ear is what helps you balance and stay, uh, you know, level. And when you have a condition that affects your hearing, uh, that can actually make it difficult to stay level.
Speaker 1 00:19:46 Yeah. And how you haven't found much of that having type two.
Speaker 2 00:19:53 Yeah. For me, no, I've never had any issues with balance.
Speaker 1 00:19:57 So talk about, because this is a big thing, you know, um, when you gave up driving that's, if you're used to driving and, you know, you have a disability and you may know it's coming, but you know, you know, how was talk about that feeling of having to give it up and knowing when you know that you should give it up? How was that for you to, to do that devastating? Maybe?
Speaker 2 00:20:29 I think for me, that was probably one of the hardest things that I've had to give up. Um, you know, I've been very fortunate to have a very, um, you know, international career and I've been able to travel around the world and live in different countries. Um, I've lived in six different countries and I've traveled to over 50, um, a lot of that due to my previous job, but, you know, being able to drive just that independence, you, a lot of people really take that for granted, especially in the United States where we're such a car centered when I lived in Europe or when I lived in east Asia or even in Sub-Saharan Africa, you know, everyone takes public transit and public transit gets a lot of significant investment. And, but in the United States, public transit, especially in the Midwest, tends to be reserved for people with disabilities or low income people.
Speaker 1 00:21:28 And this is where we need it most
Speaker 2 00:21:30 Bakley. Exactly. And, you know, in Minneapolis, unfortunately in the twin cities in general or a very car center designed city planning. Now I think that changing, fortunately, we all recognize that it's not sustainable to have a car centered culture that is taking time. And so for me personally, you know, it was really hard to give up driving, living in Minnesota because, you know, it's just, I there's a lot of, some parts of the state that are inaccessible to me now because I can't drive to them. And so I think that is probably one of the hardest. And like I said, I only gave up driving about over a year ago about when the pandemic started. Um, for me, the pandemic was an opportunity to, um, just, you know, rip the bandaid off, so to speak, um, because we were all working from home and it just was a lot easier, um, to make that transition when I wasn't, you know, I didn't have to rely on driving to a physical location to work.
Speaker 1 00:22:36 Talk about what the trigger was that made you say I have really got to stop.
Speaker 2 00:22:43 Um, I think when I really had to stop driving at night, um, I, I, to the point where I was, I was so uncomfortable and, you know, I, I could see other cars with their headlights on, but I was, I was struggling to see pedestrians, especially in the city. And I just couldn't, it was just hard to think about the fact that if I'm not careful, if I kept driving, I could hurt someone, you know, less about me, but more about, you know, hitting someone accidentally. Cause I couldn't see them. So unfortunately I never had any incidents. A lot of people with usher syndrome actually have an incident like that, that forces them to give up driving. Um, I fortunately never had that. Um, and I was able to give it out, but like I said, the pandemic was really the one, the thing that, that, okay. I can give up driving now because the transition is a lot easier pandemic hadn't happened. I'm not sure. I'm really not sure if I would have given that up as when I did
Speaker 1 00:23:45 Now more and more people, not everyone, obviously some companies wisely are learning the benefits of, you know, having their people at home because many can, but some are pushing to go back. Um, and for those who are discovering now, as you did that, they really have to give up their driving and not just people with disabilities. I think it's, you know, there's an elderly population too, that eventually realizes, oh crap, I can't keep doing this or I should give it up, but I don't want to give it up. Um, that's a big, that's a big independent. Sometimes it feels like it's, it's a bigger crutch than their disability or their aging. So what do you tell those people? Like, what's your advice to them?
Speaker 2 00:24:39 No, it's, I would say that it's really difficult to give up driving in the United States. And you know, it's not that hard, like I said, in Europe for any stage or another country that have really invested in public transportation and where public transportation is something that is ex everyone uses, it's not limited to a certain group. Um, and so when that happens, you don't feel as excluded from society, but yeah, it states when you have a carcinoma culture, you do feel excluded. And that can be really, really, really difficult, especially if you're someone who never really used public transit before. And I was fortunate that I got to use public transit systems all over different countries around the world. And so I was comfortable with that concept. Um, so I think for people who have to give up driving and, you know, it's, I think one thing that I think I would tell people is that it's okay to grieve it.
Speaker 2 00:25:38 Uh, and you might want a therapist, you know, like a grief counselor, because I mean, that's what it is for a lot of people when you're losing your vision, your, a lot of the feelings you have are grief because you're losing something that, you know, that you really took for granted or you valued a lot, you know? Um, and so I hear people all the time say, you know, I would never want to lose my vision. That'd be the worst disability. I'd rather lose a leg or I'd rather lose my hearing, but never nevermind. Um, but someone who lost both or has hearing loss and, and losing my vision, um, I'm during the learn that it's not, there's a lot more to blindness than what the preconceived notions are and what society's stereotypes of what being blind is like, uh, and even usher syndrome. When you say deaf blind, we don't mean totally deaf and totally blind. Um, it's, it's a different way of seeing, um, that living in this world with, you know, built around people who can see, I have total Corfield vision, that's where it makes it a disability, but you know, most people with usher syndrome still retain some vision.
Speaker 1 00:26:58 Um, what kind of support systems would you suggest people have in place when they learn that they have usher syndrome?
Speaker 2 00:27:10 You know, from my personal experience, you know, I, you know, I actually went to go see a therapist and talk to him about it, and I struggled to find a therapist that I could really, um, really benefit from because, you know, can you therapists that can specialize in disability and that's not very common,
Speaker 1 00:27:28 It's hard to find.
Speaker 2 00:27:30 Yes. And so, you know, for me, when I discovered a network of people with I syndrome, you know, using Facebook through the usher syndrome coalition and finding other people, especially people who are around my own age now, other millennials with usher syndrome and then setting up a zoom call, that was kind of the great thing during the pandemic. We made zoom calls and zoom happy hours and things like that. We made that. And so it was really easy to organize that and get people on it. So, you know, we had a millennials with usher zoom group, and I found that more cathartic, more helpful than any therapy ever was. And so I think just meeting other people and talking to other people, we have the same experience, especially someone in your own age. You know, one of the things we talked about, all of us have partners or spouses, um, and then who don't have ushers.
Speaker 2 00:28:26 And so that is a big challenge in our relationship is that, you know, not being able to believe verbalize what you're feeling and what you're, you know, what you can see and what you cannot see. And that can be hard partner, who's trying to understand, but can't, he doesn't know how to experience that and that can cause relationship problems. And so, but being able to talk about that with other millennials who are going through the same thing, it just was really, really helpful and put things in perspective and made you feel not alone at all. So I think my, you know, the best support group you can get is to talk to somebody, even if it's on the internet or a phone, um, to talk to somebody else who has the same thing as you. Um, because I think doctors and other people who don't have ushers can be really clinical and cold and sometimes a bit doomsday, you know, thinking of the worst thing in the world. And, you know, it's just another way of living and talking to other people who have that same way of living just makes you feel a lot better.
Speaker 1 00:29:30 Yeah. Yeah. Well, and imagine too, you know, if your spouse knew before things were very bad, they don't really have a concept and then they watch things progress. And that can be, it's a life-changing thing for both of you.
Speaker 2 00:29:48 Absolutely. Um, you know, for my partner, we met, I was still driving. I had a different job than I do now, and that job, I traveled about 50% of the year internationally. And so I was living a very independent, you know, very, you know, kind of exciting life, so to speak, um, that was, I didn't rely on people so much. And so then that started, that transition happened and, you know, I started relying on him more and more, you know, for support for getting around at night. Um, you know, especially now that I give up driving, I rely on him for rides, for, you know, getting groceries, running errands that I can't do. Um, and so that kind of truly changed the dynamic of our relationship, you know? So unfortunately he either really, I mean, he'd been really great throughout the whole thing and very accepting and understanding, and we're still together. So it's been know. Um, but I would say he's the last four and a half years have been the most dramatic change in my lifestyle because of usher syndrome. And so the fact that he'd been through it, you know, it's, it's, it says a lot about, um,
Speaker 1 00:31:03 We need to take another small station
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Speaker 1 00:37:21 I will turn to Kathy. I may be 0.3, FM Minneapolis, and KFA I got all RG. This is disability and progress. My name is Sam. And, um, we're speaking with Trevor Turner, Charlene. I was just wondering, um, if you had any questions for Trevor, this is kind of the time that I let my research person ask anything. If she wants,
Speaker 6 00:37:44 First of all, I really appreciate your descriptions. You're you're very, uh, it makes a lot of sense the way you're speaking to us that sometimes people get a little bit too, uh, Luther or whatever, or too vague. And I think you're hitting it right in the right spot. Um, one of the things I would wonder about is what, when you, you're part of the, this ambassador group, what do you do? Do you do speak to organizations or
Speaker 2 00:38:12 Primarily, you know, for me, I like to serve as a resource, you know, and somebody from in Minnesota finds out that they have usher syndrome, you know, I want to be there and talk to them and let them know, like what's the best ways to kind of move forward and, um, and, and deal with this, so to speak. Um, but we also, yeah, we'll talk to different organizations. I've talked to, you know, many hearing loss or deaf organizations, um, and the deaf blind school here, um, in Minnesota that I've spoken at, um, it just kind of networking and kind of just bringing awareness to, um, usher syndrome. And, you know, we do radio interviews just like we're doing now to these spots. And just like I said, being the ambassador and trying to educate people about it and, and try to dissuade any kind of misconceptions about usher syndrome and things like that.
Speaker 1 00:39:07 And what is the most common misconception on usher syndrome?
Speaker 2 00:39:13 It's the most common misconception is, uh, you know, I can talk from my own experience and that when I was 19 and I was diagnosed with usher syndrome, my doctor point blank told me that I would probably never meet somebody else with usher and said what John, you would wrong. And he also told me that I would be totally blind before I was 30. And so I lived my twenties thinking that I was going to lose my all night vision before I was 30 years old. And that never happened now, like I said, it does progress differently for different people and also your lifestyle can affecting, you know, if you're a smoker that can make things worse, but if you wear sunglasses, UV protection, you can prolong your vision because UV light can really affect that progression as well. And so protecting your vision and, you know, eating healthy, exercising, all those typical things to stay healthy will also make your eyes stay healthy longer.
Speaker 2 00:40:11 Um, and I think the common misconception that deaf blind means totally deaf or totally blind is not death. Wine is a range of different things and the range of different types of vision loss. Um, you know, there are other types of vision loss too, like macular degeneration, um, that have very similar symptoms, but are not quite the same. You know, a lot of there are other types of vision loss where you lose your central vision first, then your commercial peripheral vision was usher syndrome and retinitis pigmentosa. You typically, you start losing your night vision, your peripheral vision first, and for many people, your central vision stays intact. Um, you know, my doctor himself has said, you'll probably keep your central vision for a very, very long time. Um, so I think, you know, I can still use a computer. I can still use my smartphone.
Speaker 2 00:41:06 Um, I don't generally need you for a meal or anything like that, but that's different depending on the nature of your vision loss. Um, so I think that just understanding that blindness comes in a spectrum and that hearing loss comes at a spectrum, um, not everyone uses ASL. Um, not everyone, you know, some people need a cochlear implant, but some people would be just fine with hearing aids. Um, and so I think just understanding that it come that variety, you know, I sometimes use a vision cane to help me get around, especially in areas that I'm not familiar with, but then other times I don't use it. And I think sometimes I get, looks like when I get on the bus with a cane and then sit down and start using my phone, what was that? How can you see your phone? Why are you using a cane?
Speaker 2 00:41:56 And for me, it's primarily because I struggled to see no objects that are low on the ground. So I have a risk of tripping over things or not seeing things come from my sides, um, quickly enough to avoid them. And so the cane helps kind of give me that warning if something's coming up. Um, but I still can still use my phone. I can still read, I still look people in the eyes when, um, I am talking to them because I can still see faces. Um, and so I think just that kind of misconception, like teaching people that blindness doesn't mean blackness. It doesn't mean dark.
Speaker 1 00:42:36 Um, is usher syndrome something you grow old with? There's no longevity thing triggered with it.
Speaker 2 00:42:44 Yeah. So most people live, um, totally normal life expectancy. Um, you know, as you get older, it will get worse and more eventually sometimes people, if you're much older, um, especially with type two, you might lose all your vision. You might get to a point where they don't have any really useful vision lab. Um, again, it depends on the person and where their lifestyle, where they're at with it, but you typically grow with it. Um, but like I said, there's different types of one, two and three will manifest itself differently as you get older, but you do grow with it and it does continue to progress as long as you live. And
Speaker 1 00:43:25 Where can people go to find out more about extra syndrome,
Speaker 2 00:43:29 The best place, you know, usher syndrome. Um, coalition is a great organization that has a lot of really great resources on that. Their website is usher desk-syndrome.org. Um, and there's also the usher syndrome society. They do a lot of work around, you know, arts and entertainment and P you know, showing showcasing usher syndrome and a, you know, a different way, not so clinical understanding that coalition does a lot of work with, you know, trying to find and work with, uh, you know, clinical studies and things like that and doing more research on it. Um, and then of course there's lots of support groups on Facebook, especially other people. I think the best resource or usher syndrome is to talk to people with usher syndrome themselves, because they're going to give you the actual reality of living with it. And not when a doctor says, no, I think doctors tend to over be too vague or, you know, they focus too much on the clinical thing and focus too much on the vision loss and the goal just
Speaker 1 00:44:31 Living your life.
Speaker 2 00:44:32 Right. And they don't necessarily have good advice for how to live with it. So talking to someone, the ushers is probably the best way to learn about it.
Speaker 1 00:44:42 And I presume there's, uh, there's parenting groups out there as well in case, you know, parents need advice for their kids.
Speaker 2 00:44:50 Totally. Yeah. There's definitely a different support group for parents with us or syndrome. I would even say as spouses and partnered with someone at extra syndrome, having a support group for them, because it can be a challenge, especially if you don't know what it's like, if you, you know, sometimes it's really hard for someone who's, as you're sending them to like verbalize what they're experiencing, you know, it's, I can't give you my eyes so that you can see what I'm saying. Right. And I can see a certain situation. And sometimes I can't, as some it's very dynamic and changing, and that can be very frustrating. Cause some for a parent or for a partner, you sometimes overthink it and think that you, you know, you're, I can't see at all, or I, I'm never going to be seen in certain situation, but sometimes, but then you, I perform really well and then they, oh yeah, he can see fine. He can see fine, but then I struggled. And so there's never seems to be a happy medium. And so it can be really challenging as a parent or a partner. Did you really know? And you know, sometimes just as a person with ushers, it's just hard to explain. I don't know, you know, like what can you see? What, when can you see this? Will you be able to see this? Like, I don't know, I don't know until I'm living in.
Speaker 1 00:46:06 So can you give us a website again where people can go and find out more?
Speaker 2 00:46:11 Yeah, absolutely. So usher send them coalition. You can just Google that. It's probably the easiest, but it's also usher dash syndrome that work.
Speaker 1 00:46:20 Is there anything else you'd like to leave us with? We really appreciate you coming on.
Speaker 2 00:46:25 Absolutely. You know, I, I take disability advocacy very seriously in my last job, focused on disability advocacy for hearing loss. And now I am the public policy director for the Minnesota council on disability. And so I'm always advocating and trying to educate people about not just vision and hearing loss, but also other disabilities, developmental disabilities, physical disabilities, all of that kind of thing. Um, you know, I think that we, as a society need to really focus and think about disability and how do we incorporate universal design and making spaces accessible for everyone? Uh, because we all know that universal design benefits, everyone, not just people. Um, but I think that, you know, for so long people with disabilities, especially deaf blind people were ignored or marginalized pushed to the side institutionalized and it can be really isolating. And so I think the most important thing, if you're somebody who doesn't have a disability yet, you know, I always say, think about disability.
Speaker 2 00:47:31 If you're lucky to live long enough, you will have a disability at some point in your life. As we talked earlier, elder being elderly is a disability. And so I think that if you're not someone who identifies yet other disability, you know, thinking about how you would live your life, if you had a disability and what you would want from everyone else and, you know, paying that forward and, and really listening to people with disabilities, listening to what they say. Um, you know, I think people with disabilities, we don't want to just be heard, but we also want opportunities to be at the decision making table. Um, and so when you're working in policy or design and, you know, bring in somebody with disabilities and then take their opinions and their, their expertise very seriously, and you'll find really good solutions for a lot of and making things more accessible.
Speaker 1 00:48:24 Well, Trevor, thank you so much. We really appreciate your time today. Thank you. This has the disability and progress to be expressed on the show are not necessarily those of cafe or its board of directors. My name is Sam. I'm the host of the show, Charlene dollars. My research team, who've been speaking with Trevor Turner. Trevor's a volunteers. He volunteers as an Ash ambassador with the usher syndrome coalition. This is cafe 90.3 FM Minneapolis and <inaudible> dot org. Thanks for listening. The bye
