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If life is a stage, I want better lighting.

If you did not have the opportunity to see Kaitlyn Mielke's presentation we got you!

View the video here with full transcriptions provided by the presenter herself, YES! She is that cool!

[Descriptive transcript: Zoom platform with gallery view showing tech manager Julie Pleski on top left corner, Deaf Equity board member Migdalia Rogers on the right side. Kaitlyn’s PowerPoint presentation is in the window in the middle with the title showing, “If Life is a Stage, I want better Lighting” with her name underneath in small print. On the bottom row are Kaitlyn Mielke, the presenter, and Regina Daniels, the moderator, and an errant window from audience member Cheryl Cook.]

[Slides descriptions: Slides are black with yellow fonts and icons. Some slides also have photographs added. All photos also have ALT TEXT on them.]

>> Migdalia: That's Regina Daniels. We're gonna have her moderate tonight's Q & A for the evening for us, so I'm gonna hand the floor over to Regina. Welcome, Regina.

>> Regina: Hello! I’m so glad to be here. I know we're all here to watch Kaitlyn’s presentation, and just a little housekeeping, we're going to hold all the questions and answers until the end. So when she's finished with her powerpoint, people can submit their questions on chat, please and then I will sign them to Kaitlyn so that it's easier for her to see.

[Errant window from audience member Cynthia Weitzel pops up.]

>> Regina Daniels. Keep your videos off if you don't mind and keep yourself muted for the evening. So now I think we're just going to turn it to Kaitlyn.

[Migdalia and Regina’s windows disappear.]

>> Kaitlyn: All right, I want people to make sure that you're muted on your microphone and to make sure if you need any technical help, that that's all set too and cameras are off.

[Regina’s window pops up while Cheryl’s pops off.]

>> Regina: So maybe yeah can we just make sure that we have all of our cameras off you're probably gonna have to text cynthia cynthia do you mind turning it off

>> Cynthia: Oh sorry about that. Sorry I'm terrible at zoom. I’ll figure it all out.

[She explains how her mother is also watching and that she, Cynthia is trying to figure out how to turn her mike and video off. Her video eventually turns off.]

>> Regina: There you go.

>> Kaitlyn: Good.

>> Regina: I'm just trying to have fewer videos that I have to like -

>> Kaitlyn: Oh my goodness, more people coming in on video. I'm glad to see that.

>> Regina: Let's see. I do see that some of you have not yet muted your microphones, and I know if you're deaf you might not know you're not muted, but please do. The only person who shouldn't be is Patty the interpreter. I think we'll wait just a second or so to get everybody else in and to have the videos shut off.

[Wendy Rex’s window pops up but no video is shown. It disappears after a few seconds.]

>> Kaitlyn: But you know this is always like the theater. Somebody's always walking in right after the house lights go down. This meeting is being recorded.

[Vicky Vail’s window pops in and lingers for a few moments before being shut off. Julie’s window pops off while Vicky’s comes back on and off line.]

>> Regina: All right, that's fantastic.

[Interpreter Patty Gordon’s window pops up asking folks to mute their mikes.]

>> Interpreter: So yeah, just everybody cameras - can you back up - someone’s mike is on again so please turn them off. Please, can you go back to your introduction again please?

[Her window pops off. Vicky’s window returns and is shut off again.]

>>Regina: So again I'm Regina. I will be facilitating this evening's performance, so we will be just asking people to make sure that your sound is muted, your videos are off. At the end of the presentation, we will have time for questions and answers. I will come back at that time. Your questions should just be put into the chat box and then I will take them from the chat box and sign them for Kaitlyn so she can see them clearly. So thanks for being here, and I think we're finally going to turn it over to Kaitlyn.

[Slide on left side: Photo on left side: Kaitlyn stands with her two younger sisters under the marquee for the touring Broadway show of "The Phantom of the Opera". The marquee has light bulbs lit up on the underside.]

[Text on right side: “If Life is a Stage, I Want Better Lighting; Kaitlyn Mielke”.]

>> Kaitlyn: Great, Regina, do you mind taking your video off too? Okay great. Let me get my supplies situated here. Zoom keeps asking me if I want to have my sound on and I don't know how to tell it I'm deaf but there you go. Oh yeah. Anyway, hI everybody. I am Kaitlyn Mielke. This is my name sign. I am happy to see all the names of everybody who's here tonight, and I appreciate you joining us. I hope you enjoy the show. So the title of tonight's performance is ``If life is a stage I want better lighting”. Story of my life, and I will add visual description to some of this for anybody who might be here who's low vision. I am a white woman. I have brown hair just past my shoulders. I'm wearing a black shirt with a black background and red lipstick just so anybody knows, the slides will have photos too. I will be describing those as I go. On my opening slide I have a picture of me with my two little sisters who are now taller than me, they weren't at that time, and we're standing in front of a theater marquee and the show that we are about to go see is “Phantom of the Opera” so it's the marquee with phantom on it. Next slide, please.

[New slide. Text on left side: Introduction:

Born Deaf, discovered at 8 months old

Raised with TC, switch to ASL

CI at 5 years old, 22 years old

Day school for deaf pre-3rd grade

Mainstreamed 3rd-12th & college.]

[Photos on the right side. Top image: Kaitlyn, aged 3, wears a FM system and has her hand raised. She smiles at something off-camera. Bottom image: The 2014 UMN Deaf College Bowl team stands in a row, with their arms thrown across each other's shoulders. They all wear matching maroon and gold T-Shirts with a M-fist on it, and NAD conference lanyards around their necks. From left to right: Kaitlyn, Johanna Lucht, Maggie Bangert, Kyle Johnson, and John Wilson.]

>> Kaitlyn: I do have a tech person, thank goodness, who's doing all the slide management for me so I don't have to worry about trying to see that and this all at the same time. So a good bit of background about me, I was born deaf but they didn't find out I was deaf blind until I was much older but I was identified as deaf at eight months old. So of course my parents at that time based on when I was born decided they would use total communication with me, where they would sign and speak at the same time. I think I signed my first sign at one, and that was the sign was light, ironically. I also used to get very excited about turning on and off the lights apparently. So apparently that was something that my parents did or my parents really focused on. So I went to a preschool a day program for deaf and hard of hearing children that was in Chicago. I think some of my old teachers - my preschool teacher - might even be here and if you are, yay! Nice to see you. First through third grade, I was in a mainstream program part-time and then at the school for the deaf in the afternoon - or sorry, the other way around - school for the deaf in the morning mainstream in the afternoon. When I was nine, my family moved to Utah and I went full mainstreaming after that all the way through high school and college, and then I went to college in California first - California State University at Northridge - CSUN. I went to Idaho for a semester, and then I transferred to the University of Minnesota - go gophers! So for all of those people who knew me from that time in college, hello to you too. I went to the University of Minnesota for both my graduate and undergraduate degree so I guess I'm a full gopher? The pictures that I have on this page. The first one is a picture of me at about three years old. I think with one of the lovely old hearing aids strapped to my chest - oh that was one of my FM systems but I am raising my hand eagerly ready to talk. Thank god I am not having to wear that thing anymore! And then the picture on the bottom of this slide is the college bowl team that I was part of for the University of Minnesota, so it's all of us standing together with our little ID badges and our little gophers sign, our little t-shirts that we had made. So this is the NAD competition that happens every other year, so that was when we were in competition at NAD. It was great. I'm waiting for the interpreter to catch up, so there we go.

[New slide. Text in center: Ask yourselves, what does deafblindness or low-vision look like?]

>> Kaitlyn: So I think people often think about what does it means to be low vision. What does deafblindness look like? I'm sure everybody has some stereotype about what it might look like to be a deaf-blind person? Somebody walking with a white cane? Somebody who's using a guide dog? Maybe a person walking around with dark sunglasses on whose eyes you cannot see? Or they have eyes that just look a little bit odd? I think those are some of the stereotypes that go with the person who has a vision loss and I even held them myself growing up. I never kind of had a vision of what a deaf blind person would look like because I was just deaf. The next slide.

[New slide: “A Learning Curve”. Icon: A yellow spectrum with a person icon on top and a yellow bar underneath. On top of the bar is vision loss with fully blind on left side, low vision in middle, and sighted on right side. On the bottom is hearing loss, with profoundly deaf on the left side, hard of hearing in the middle, and hearing on the right side.]

>> Kaitlyn: I mean, if you think of this it's really vision loss and hearing loss are both on a spectrum. So for those of you who need a description, I basically am showing a spectrum line on the top you see a person and there's a little icon of a person standing above it but you see the spectrum runs from somebody who's fully blind to low vision or sighted, and there's a spectrum with deafness as we all know those people who are profoundly deaf, those people who are hard of hearing, and those people who are hearing. So both vision and hearing are on a spectrum, so every single deafblind person is different. There is no one stereotypical deafblind person, really, only a small percentage of people are actually fully blind and fully and deaf. I mean really, it's a minuscule number of people, I mean most people have some sort of vision left and that sort of vision can vary. I mean there could be a person who sees 20/20 all within the center vision but has no peripheral vision, or the other way around. Can see beautifully in the peripheral vision but has a blank spot in the middle, or has good vision all the way around but it's blurry, or somebody who can see light but not shapes, that sort of thing. For me, I could identify myself as deaf-blind or deaf low vision and sometimes I tell people, no I'm deaf and hard of seeing, because I feel like - you know, people say there's hard of hearing, why isn't there hard of seeing? Which kind of implies that that halfway point. It's kind of where I am, so now there's a learning opportunity for you about what hard of seeing might be. Next slide, please.

[New slide: “The Face of Undiagnosed DeafBlindness.” Photo collage with the following images: Kaitlyn, aged 12, straddles a bike on a grassy field. She wears a white helmet and green shirt, and is smiling at the camera. Kaitlyn, aged around 4, sits on a tree branch and holds on with both hands. A row of cast members from "Alice in Wonderland" stand on the stage with a painted backdrop of colorful flowers and plant life behind them. From left to right is the Dormouse, Alice, Kaitlyn as the Caterpillar, the White Rabbit, and a playing card. Kaitlyn, aged 11, stands with her younger sister and their father in front of a loading bay for a gondola taking skiers up the mountain. They all are dressed in winter gear and holding skis and poles. Kaitlyn, aged 11, wearing a hot pink soccer jersey and holding a soccer ball, smiles for the picture. Kaitlyn, as a high school junior, kneels among the cast of "Fame" the musical. They are all dressed in '80s clothes and a backdrop painted to look like a graffitied high school hallway stands behind. Kaitlyn, aged 6, grins mischievously as she drives a go-kart on a track lined with rubber tires.]

>> Kaitlyn: Now remember I talked to you about the stereotypes of what a person with blindness might have, so you know the dog, the white cane, everything like that? I want those to go out the window because this slide shows you a whole bunch of pictures that are all of me engaging in activities basically from the time I was born until I was diagnosed with Ushers, and there's - I'm doing stuff that every kid does. One of the pictures is me on a bike on a grass field on a grassy field. The next picture over is me climbing a tree. There's me in on stage in a performance in “Alice in Wonderland” - I was the cute little caterpillar and that tiny little one in the front, but that's me. Next pictures of me skiing with my dad and my little sister who is now not my little sister anymore. I have a picture of me driving a go-kart, so I have driven. When people say deaf-blind people can't drive, it's like well here's some proofs that I did at least at one point in my life. Another performance, this was in high school musical with on all hearing cast and me being the only deaf person in the cast, and then my soccer picture from when I played soccer, and I wanted you to see these pictures because this lets you know who we are. I'm in a facebook group with people who have Usher Syndrome, and there's a parent a father who has a daughter who's only three years old who was just diagnosed with Ushers and all the doctors say ‘well your daughter won't be able to this this and this, she won't be able to ride a bike, she won't be able to ski, she can't drive’ so all the message the parent is getting is about the things that his daughter cannot do, and the rest of us in the group said ‘uh’. We're very quick to let him know ‘I'm sorry we have done all these things. We have driven. We have ridden horses. We have danced. We do it all’ It's like things might take a little longer. Things might have to be arranged in a certain way, that's fine. I mean I was 12 when I finally learned to ride a bike, so it took me a while, but I got there. The peer pressure helps sometimes, because like my sister was five, and she learned things that I didn't know how to do, so of course then I felt like I had to learn how to do them so at least I could keep up with my sister so I at least I did learn to ride a bike one day before she got it. I had - my - I had my capability -

[Background audio: “Good morning my favorite…”]

>> Interpreter: Oh somebody has their sound on please mute yourself

[Overlapping background audio.]

>> Interpreter: So you might want to turn that off, wherever you are.

>> Kaitlyn: …I mean I was using strollers - I was taking my sisters around - I think my point is, don't consider deafblindness or Ushers a limitation. There are no limits. Next slide, please.

[New slide: “When the Show doesn’t go on as planned.” Photo on right side: A smiling Kaitlyn sits on the bed in her college dorm room. The cover is striped, with a pile of things yet to put away on it. Behind her is a built-in bookcase with books and a light already on it.]

>> Kaitlyn: However, in my life I had a plan for how everything was going to go and then bang, everything did not go as planned. The picture on this slide is my college picture - this is my freshman year - not my first day the end of the freshman year. So I finished my first year of college, I got home and my parents sat me down, and said we need to talk, and I thought, okay? They said ‘well..’ I didn’t have a rap sheet, I'm okay, I’ve not been arrested or anything, but parents seemed very concerned. They said, ‘we suspect that you actually might have a vision loss and we need to take you to the doctor to check’, and as a deaf person, I thought, I am deaf which means of course, I can see fine. I knew I struggled a little bit seeing in the dark, but whatever. So we went to the doc, did all the testing, and sure enough,found out I had a vision loss. So they wanted to send me to a specialist to figure out, you know, what was really going on. So there you go. Off to the next doctor, out of state mind you, and was diagnosed at that time with Usher Syndrome, which I knew nothing about, and what I was told, is it meant I would go blind, and the doctor said, ‘well you know, there's no cure for Ushers. There's no way to stop the progression of the vision loss, and we have no idea when it's going to go. Five months? Five years? 50 years? We just don't know.’ So this is not the best way to deliver that kind of news, I got to tell you. Next slide, please.

[New slide. Text in center: Usher Syndrome is a genetic condition that causes deafness, vision loss through retinitis pigmentosa. In some types, balance issues are also present.]

>> Kaitlyn: So for those of you who are wondering what Ushers is, it is a genetic condition so it - and it means it's a combination of hearing and vision loss, and the vision loss is actually from retinitis pigmentosa. I think in some cases, also a person's balance might be affected. Most people with Ushers are diagnosed when they're 10 to 13 years old, mostly - that's when the vision loss starts to manifest - [audio] - I know of course now we can do the newborn screening, but we can test to find Ushers even with a newborn, but of course I didn't even know I had this until I was 20 years old. So that was quite a surprise, and what happens in Ushers, is you just sort of slowly lose things, like for me I remember being 10 years old and up in the mountains and looking at all the stars, you know, this huge sky full of stars, and then I think four years ago or so, I was on a cruise. This is pre-COVID, and I was standing on deck and I could see a star here and there but it certainly wasn't that sky fall it was just only that north star or the Venus - you know - the really bright things. So that's the kind of change that happens over time. There are people with Ushers who don't see stars at all. Again, we're all different. Next slide, please.

[New slide: “What is Usher Syndrome?” Table: The three different types of Usher Syndrome, type 1 (deafness since birth, vestibular issue as in late to walk and sit up, vision loss starting in late childhood/adolescence); type 2 (mild to moderate hearing loss in childhood, no balance issues, vision loss starts in young adulthood; and type 3 (mild to moderate hearing loss in adulthood, varied balance issues, vision loss starts in adulthood.]

>> Kaitlyn: There are actually several types of Usher Syndrome - three types and so they're categorized by the different kinds of impacts Type one is a person who's born profoundly deaf, who has some balance issues, and maybe even as a baby, who's learning - you'll notice it that they might sit up later, they might learn to walk as a delayed skill, maybe they might not move into walking until one. I think it took me 18 to 20 months before I was actually up on my feet walking, and then the vision loss happens somewhere or begin somewhere in the teenage years. It could start earlier, but that's generally the type 1 types. For type 2, it means a person tends to have a hearing loss,might be hard of hearing, no impact on balance, and the vision loss really does start a little bit later - young adulthood - and that's a really large group. Most people are type 2. If you have usher syndrome type 3, very rare, to have type 3 means a hearing loss, means some vision loss, and balance issues. Maybe you have them, maybe you don't. I am type one. Okay, next slide.

[New slide: “Identity Crisis.” Text in center: Deaf? Deaf and low vision? Deaf and hard of seeing? DeafBlind? Where do I fit in?]

>> Kaitlyn: So consider my life I was deaf yesterday, then I was diagnosed with Ushers, and now suddenly I am quote unquote deafblind, and yet I can see? So consider what that meant for me as an identity, as a person, as an identity? Deaf and hard of seeing? Deaf and low vision? Deaf and whatever who am I? Where do I fit? That - this - has become a big issue. I mean I felt immediately that the deaf community was telling me I belonged in the deafblind community because I was blind, and I couldn't see. In the deafblind community just the opposite, I could see too much. So caught between the two worlds. Next slide, please.

[New slide. Text in center: What does low vision actually look like?]

>> Kaitlyn: So people ask what low vision might actually look like? What's the experience? Let me talk to you about that. I'll give you an idea and again, stereotypes out the window.

[New slide: Photo in center: Tunnel vision view of "One Short Day" from the musical "Wicked". Two women, one blonde and dressed in pale yellow, and one green skinned woman dressed in all black and wearing a pointy hat hold hands and sing to the audience. Their heads down to their waists are showing.]

>>> Kaitlyn: Next slide gives you an idea. So this slide has a picture of a performance - the show is ‘Wicked’ and that is of course what happened before the movie, ‘The Wizard of Oz’, so it's the origin story of the Wicked Witch of the West, and Glinda. So what you see is Glinda, the popular girl, blonde, and Elphaba, the green girl, and you can see the - you see both of them, and you can see in the background, there's colors, there's people, and it's green, that's - That seems like a pretty normal picture, right? At least it looks normal to me, but wait. If I ask the person next to me who is a sighted person what they see, we get the next slide.

[New slide: Photo in center: The same scene as tunnel vision view, but with the ensemble cast dancing behind them, dressed in outlandish costumes in different shades of green. Both women are viewed in full, from head to toe. Behind everyone is a stylistic scene representation of the Emerald City with a green background and a sunburst metal design on it.]

>> Kaitlyn: This - so suddenly, there's all this other stuff. So that's what I see. It's like I'm missing things up top. I'm missing things side to side. I'm missing all those dancers. I'm missing the entire backdrop - you can actually see the stage in this picture, not something I can see. I can never see anybody's feet, and to me it's like just this little cropped vision of what's in front of my eyes. That's my vision loss, and that's about a 10 foot view - what you can see at 10 foot like this whole thing would take me halfway back to the back of the theater to see the whole thing. So I really have to be back from something to be able to see the whole thing, but yikes that's not great either.

[New slide: Both photos are compared side by side with “Normal Vision” on the left side and “Tunnel Vision'' on right side.]

>> Kaitlyn: So we'll do a little comparison on that next slide so you get an idea of what it is that I deal with. The picture on the left - on your left - is the full image. The picture on the right is the one with the tunnel vision that I deal with. So what I see is quite constrained compared to what most of you - I'm there might be some deaf low vision people here or deafblind people here - but most of you will see that whole screen. Someone asked me, does that mean the rest of your vision is black? Like the cropping here and I was like no, it's not that it's black. It's just - it's just kind of smoky, and it looks normal to me to not be able to see clearly off the sides of my eyes. An activity you can do later not right now, is take your phone and put on the camera app, hit video, and then look at the world through that video screen - just on your camera that's about my frame. So imagine if you couldn't see anything above or below or to either side of your camera. I mean for me I have to have lighting to be able to see well, but basically everything's still framed in that small frame. So give it a try sometimes, just let me know how that feels just to kind of have it in that constraint. Okay, next slide.

[New slide: “The Pencil and the Elephant”. Icon image in center: An image in black and yellow using icons to represent the idea of being able to see a pencil across the room but not see the elephant standing next to them. A person icon is on bottom, with a tiny pencil on top. Two lines represent the narrow visual field shows the pencil inside, but an large elephant on the right side is outside the vision field. ]

>> Kaitlyn: This is a joke sort of that I love - a deafblind, low vision person I'm just letting people know that this is a picture of an icon of a human, and a pencil, an icon of a pencil all the way in the other room, but directly in front of them. Meanwhile to their side is a giant elephant, and it's because I could see the pencil all the way across the room, and have no idea an elephant is standing right next to me. Size doesn't matter it's location. So that location in my center field is where that kind of stuff is, and it's like you can see a pencil but you can't see an elephant, but hey it's the same way. I mean this has happened to me in real life. I went to the mall with some friends for lunch, and I wanted to know where the directory was because I was looking for the food court. Right. So I asked my friend where the directory is, and both of my friends who are sighted, looked around and couldn't see where the directory was. I looked directly in front of me and there was a candy machine, a tree, and just beyond the tree, there was a kiosk ,and just beyond that was the directory, and I could only see the corner, but I knew that was the directory. So they couldn't find it anywhere, and I found it even though it was behind - you know, a tree ,a kiosk, the whole nine yards. So they were astonished that I could actually see that, which to me was like perfectly normal, and they said, well what are you looking for? The directory. For? And I said well, I want to find the food court, because I'm hungry, and then both of them kind of looked at me and said, your food court is right next to you, and I turned to my left, and sure enough, we were standing in front of the food court. I had no idea but it was right there. So I'm all excited to get to the directory to look for the food court but the food court was literally right to my left. So that's my elephant. It happens in real life. Next slide, please.

[New slide: Text on left side: “Imagine missing the chandelier crashing down in PHANTOM OF THE OPERA… not because you weren’t paying attention, but because you have tunnel vision and the interpreters couldn’t cue you quickly enough on where to look.”]

[Photo on right side: A heavy chandelier full of glass bulbs all lit up, being hoisted upwards with a theater auditorium behind it. The logo for the musical "The Phantom of the Opera '', stylized as a white half-face mask, is on the bottom left corner.]

>> Kaitlyn: When I look back at the impact of the Ushers on some of my experiences - that's one. I'm a theater nerd, and I love musicals - Shakespeare, not so much. Hats out to them, but thank you, musical theaters my bag. The picture on this slide shows a giant chandelier ,and this is a key component of the show, The Phantom of the Opera” for those of you who may not have seen it, the chandelier is right above the audience, and really it is huge. I don't even know how to tell you how big this thing is. It's huge, and it's hanging above the audience when you come into the theater. Somewhere in the middle of Act One, I'm watching the dancing on stage, and the interpreter somehow at the same time, because I have two interpreters off stage right on the floor, and then I'm looking up to see the stage. Sighted people I think, you know so nice you can kind of look around, but I have to change my focus to either the interpreters or the stage, and I knew that in “The Phantom of the Opera”, the chandelier falls at some point, and I wanted to see that. So I was still kind of like managing my vision, and I missed it entirely because I was looking at the interpreters, and the chandelier was gone, and I don't know if you know that basically all the lights go out when the chandelier falls. So all I knew is that suddenly the lights went out, and I thought what did I miss? What happened? Or? It's at the end of Act One, how did I miss that? And then I realized I had missed the whole thing, and I really wanted to see that moment so I asked the house manager, could I get tickets to see the show again? Because I missed the chandelier, and it's kind of like this really important part, and they said yes. They gave me tickets to come back they gave me a script with a flashlight because we didn't have another interpreted performance scheduled. So I actually - literally went in the front row - it's very hard to lip read the actors when you're in the back row. So I was in the front row with a flashlight with a script ,and on the page where the chandelier falls, I turned that page over and see the words on the page - I wrote look up now! And sure enough, I looked up and there was the chandelier. So I finally got to see it, but we had to be really clever about it. Those are the kinds of shenanigans I have to go through. Now, I know when interpreters are interpreting the show, they tell me when to look so they tend to give me warning - look over here now, look up there now. For those people who've interpreted me for a while, I think a lot of people can benefit from that - if you're not really familiar with theater, it's like sometimes you just don't know when and where to look. It's great if the interpreters can help you out. Next slide, please.

[New slide: Icon graphic: A Venn diagram in yellow on black background, using icons inside the circles to represent access at the theater. On the left circle is "Deaf" with the logos for ASL interpreting, Open Captioning, Closed captioning via phone, and a script. On the right side is "Blind" with the logos for Braille, Audio Description, Large Print, and a person using a cane. The overlap section in the middle has a question mark.]

>> Kaitlyn: And it's interesting, because theater access is often based on a category. There's access for deaf people when you have an interpretive performance, or maybe open captioning, which often just means there's an LED screen that's set up off to the side of the stage where the captions of the show are going, which is extremely difficult for me, just because I cannot look back and forth that fast. There are captioning devices like a phone or something where captionings are projected, but again very difficult to find a good visual location for that, and then the actors think I'm recording the show, which of course is forbidden, but maybe I'm using a device? I've been given scripts sometimes. I’ve asked for scripts and I’ve not been able not been given them because it's like we don't want you to set up your own illegal production or because of whatever copyright stuff, and it's like, I like to read the scripts before I go because that helps me prepare, and know what to expect? So these are all ways a deaf person might have more access. A person with a vision loss might be able to ask for a large print program, might be able to ask for audio description, so somebody's describing to them everything that's happening on the stage. Before the performance they might actually do a sensory tour where they touch everything on stage, they get a chance to see what the costumes are like, and what the props are, and what they look and feel like. So great! as a deaf person I'll go to the interpreted show, but I also want that opportunity to get the sensory tour so that those things I can't quite see I know what's there because I would love to have not only the script to know what the show is about, and to have an idea of what the entire set looks like, and the costumes look like, and then I can focus on what I need to focus on. But it's hard for me being that person in the middle, because it's like, can I have captioning and audio descriptions? Well, I can't have audio descriptions because I'm deaf, so can I have captioning - as audio descriptions - I don't know - you couldn't have captioning and audio descriptions.. Scripts I like because they actually have stage directions on them, because they kind of tell me something. I have told stage managers and house managers that I need a script because I don't - can't rely well on captions, or when I can't see well, then I do get scripts on occasion. Some of it has to do with the approach. I can't demand it, but usually if I ask for it with the idea of this is what it takes for me to get access, and this is what it's going to take for me to understand what is happening. Most people are pretty generous about that - sorry just waiting for the interpreter to catch up - the interpreter is good. She's good, and even as a show is going on, I still struggle now with some of the lighting - when those scenes where they really dim things. For me, I mean you kno,w deaf people we're always talking right up until the moment that the house lights go out, but it takes a while for my eyes to adjust to the interpreter's light. A friend told me why don't you just use a flashlight to be able to help see each other's hands? And it's like no I know flashlights aren't allowed in the house so sometimes I could have asked for one for an accommodation. My friend has always been great about saying if you want something, ask the house manager. You never know, and the interpreters usually tell me the same thing. So I have gone to house managers and said, can I just have a little flashlight for intermission and after, so I can see the deaf people signing in my section, and I promise I will turn it off as soon as the actual performance starts, and i've gotten one because it's navigation and accessibility for me to be able to see. So I asked and it works - and by the way you know, people hearing people break the rules all the time anyway - smartphones have flashlights. Everybody breaks the rules once in a while. I just try to be good so I know I always can ask, and I also know that no house manager or anybody's going to know what I need unless I tell them. Next slide, please.

[New slide: “You’re not really DeafBlind.” Icon graphic: A group of icons representing conversation bubbles with a line of dialogue in each.

- "She can see that just fine! (She saw that the other day so this is the same!)"

- "Are you making that up? (I don't believe you.)"

- "Oh she's just being melodramatic! (She's just seeking attention!)"

- "I'm not going to accommodate her, because she doesn't need it. She can see fine!"

- "How did she miss that? It's right in front of her!"]

>> Kaitlyn: Since my diagnosis - since I've been working on my sort of identity, I do have a lot of issues about what are my accessibility needs? Because today I might be fine, tomorrow something might change, and I might need more light. It feels like every day is a new journey, because maybe something that worked yesterday won't work tomorrow. The same is true for all of us, I think, and yet I deal with the people telling me I don't look deafblind. They'll say you can see fine. I don't know why you call yourself deafblind. They said yesterday you could see this, why can't you see this today? I've been told I don't need accommodations because I'm functioning so well, and I've also had people actually say to me, how can you not see that it's right in front of you, so these are the kinds of phrases that sometimes come up into my life, and I cannot tell you how sort of destructive they are. I know those people who are sighted, and my friends who have - are hearing, and have that kind of privilege sometimes struggle when they hear somebody say one of these sort of demeaning things, they don't know what to do with it. Sometimes they tell me, sometimes I can fight for it, they don't know if if they should fight back. It's really a struggle. I think for those people who are close to me, like when they hear people say I can see fine, I've - I often have my friends or me ask them, well. How do you assume that? What is that you know? What's your evidence? And maybe they can see fine because it's the middle of the day but on a cloudy day they're not going to see as well. I mean, I think you do some kind of education of people, but it's really tough for people who say, well it's right in front of you and it's Great, I have no lower peripheral vision what do you expect? So for me, I have friends who tell me things like, Okay I just put a paper down by your elbow - I just there's a chair right behind you - over there. That kind of thing, so I don't want to always be the one that has to do the education, and the fighting and advocating. So I do appreciate those friends who do that and I know most people are good I just think it's only a few people out there that just have a lot to learn, still. Next slide.

[New slide: Text on left side: “The Show must go on!”]

[Photo on right side: Kaitlyn stands under the marquee advertising the Broadway tour of "Mary Poppins".]

>> Kaitlyn: For all of my analogies, there's still ‘the show must go on’, right? The picture that is on this slide is - I think that's me - yeah by myself - my sisters did not go I guess they had grown up by then - in front of the marquee for ‘Mary Poppins’, you know the show was supercalifragilisticexpialidocious - in it that one - so for me, I just had to try to figure out how to navigate, how to make things work for myself. I just adapted. I’ve managed a bunch of workarounds in all of my situations and it's a whole series of little changes to get me through life these days. So some of these are theater related but next slide.

[New slide: “On the Stage”. Text on left side: White tape, Spotlight, Windows, Cues, Target, Blocking.]

[Photo column of 3 images on right side. Top image: Black and white image capture of scene between Alexander Graham Bell and Edward Miner Gallaudet. Three students stand next to AGB. Overhead is a projected image of the two men. Everyone is dressed in black. Middle image: Jessalyn Akerman-Frank, Kaitlyn Mielke (as Miss Deaf Minnesota), and Frank Turk and his wife sit in a row, smiling towards the camera. Jessalyn and Frank are wearing Twins shirts. Behind them is a stadium full of people; they are sitting on the home base line. Bottom image: A group of people sitting in a half-circle on a stage, watching someone off-screen. Some hold binders of scripts on their laps.]

>> Kaitlyn: Let's - I'll let you look at this - there it is - these are some of the things that I've stolen from the theater that actually helped me, for example, these are all things that are used in the theater, but actually they help me in real in the real world as well. So I don't know if you've ever seen on stage, if you've ever been on stage, when I used to do performance stuff, stages are almost always black, and I could never see where the edge of the stage was, or the orchestra pit, and of course the last thing you want to do is having me pop into an orchestra pit and break my legs. So one of the things that they do for actors and also very helpful for me is taping the edges of things, so that I can notice in a high contrast color like white, and that lets me know that I'm at the edge of where I am. We have white tape on the stairs so that people can make sure I can see the stairs as I go down. So those are examples of something created for the theater. Spotlights but in my case, flashlights, I have a flashlight with me all the time, and of course my phone too. I sometimes have a terrible time when I go off stage - like for me, I'm - if I'm in the place and I walk into someplace dark, I've got my flashlight ready to go, so I can see when I go out there. Some people talk about windows - what is that? I took a dance class, but this could apply to basically karate or anything like that. When we were in practice for dance class, I was never in the front row, and I couldn't see people off to my side. So what I did is, I couldn't dance looking at the people over to my side, or that kind of stuff, so what I always did and what my dance teacher helped me figured out is they put me in the second row or in the middle of the rows, and what that meant is, by being behind the line in front of me, I always had someone right in front of me that I could see, and then also if we I had people right behind me. So if we did a turn, I had people behind me that I could have suddenly in front of me. So it's just those kind of adjustments, figuring out blocking, where's the window? Who can I see? Who can I not see? Just positioning myself for that best viewing angles. I use cues, and I don't know - for those of you who don't know what a cue is, it just means that somebody's telling you that something's coming up - I use people's facial expression as my cue, because if I can't figure out who's supposed to talk next, and I see somebody look to a certain direction, I follow their gaze, and I know that's the next person talking. If in sign language, of course we point - it's really helpful for me if you point to the next person who's going to talk. So I appreciate the people who do that for me, because it lets me know where to look - I mean, we do that in scenes in theater when I used to be on stage - I used to figure out my blocking by, okay I know that person with the red shirt, when they exit off stage right, I follow them, and when they come in off stage left, I follow them, and that's how I know to get around on stage. These are all performance-related pictures that I have here. The first one on top is from CSUN, boy that was a long time ago, it's a black and white photo and it's a fight between Alexander Graham Bell, AGB, and Thomas Hopkins Gallaudet, so sort of a staged event - an argument. I'm very very tiny but there I am. The middle photo is - hey look at that, it's from the baseball game, Deaf Day at the Minnesota Twins where I went and performed. This is a great example um this is a Target stadium, not Target like the store, and of course think about the huge stadium, tons of people, a huge field. It was really challenging for me to know where I needed to look, and I was signing the national anthem, so it was extremely difficult for me to know what to do. So what I did is I put somebody in front of me as my target, and then that person could tell me things like the crowd is yelling, and then saying oh no the music has started - go! Okay, good, so they could cue me through whatever I had to do because I just - it was a way to make me narrow my field and work within my field to be able to do my own performance. This is a staged reading for a theater company and this is actually one of the blocking moments we were doing, and for those of you who don't know blocking is the way actors move in the theater, and I always - when I walk into a theater space or any space I'm always looking for navigational dangers. Is there a drop in the floor? Are there stairs? Is there a level change of some kind that I don't know? Because I always want to know how to navigate safely. So you do blocking in theater, I do blocking everywhere, every place I walk into, to know the safest route to get from A to B and on stage.

[New slide: “In the audience”. Photo on left side: Audience view of the stage at "Hamilton". Kaitlyn and Julie stand up at their seats and they are reading their Playbills. Other patrons are seated around them. Two interpreters stand off to the left side, mid-sign.]

[Text on right side: Script & Lyrics, Seating, Time, Environmental Awareness, Navigation.]

>> Kaitlyn: People wonder about how - what do I do to manage being in an audience. Again, having a script, having the lyrics, it helps me prepare about where I'm going to look and when. I do that in real life too. If there's a presentation and I can get the powerpoint ahead of time, or I can get any information ahead of time, it gives me an idea of what is coming so I can focus on you. Because there's so much energy I have to spend just navigating a visual field in the theater. Of course people love to sit in the front. I love to sit in the front, and that's why I work in real life. Sometimes I like to be right up front where I can see. So you get spit on sometimes when you're in the theater, but there you go. For me at home, I sit at a table. I'm usually at the head of the table. It's like being in the front row - it means I can see everybody, and it means that everybody's sitting on the side, and within my field of vision. If I end up sitting on the side of the table, can you imagine - I mean I just get a neck cramp and exhausted trying to see everybody so I'm always at the head of the table, just like I'm always in the front row in the theater. Time. It is very important you have to get there early so that everybody checks in and stuff like that. I am so early - always. I always have to get there before the house lights go out, because - oh my gosh I can't even imagine navigating - not being able to see, and I'm the same like that in real life. I'm there early. I like to know where the environment is, if there's anything I'm going to need to have adapted or fixed, and that's kind of related to environmental awareness too. If I walk into a space, and the lights are dim, I am gonna find that light switch and turn them up. If I'm in a space where there's a whole bunch of people, I'll be looking for a place with less traffic, to be able to move around. Navigation is a huge thing for me. I mean, for me to even get to the theater on a theater day, think of the planning - I don't drive. I might be going with a friend who drives, and then I pay for gas. I might take the LRT or something, go with somebody. I might actually walk myself, depending on where the theater is, and there are times where I just I'm not crazy about walking in the snow - like when I was in Minnesota, you know? That snow thing - not so icky, but at least there I could walk in the skyways, but then I had to plan to even be there earlier so that I could walk through the skyways, and get there. And I guess my point is all of this access for me takes so much planning. I can't just spontaneously do any of these things. I just have to always be thinking ahead.

[New slide: Text in center: A Shared Journey: How can YOU be an ally?.]

>> Kaitlyn: So if you're listening to me talk about all these things and experiences in my life, maybe you are wondering how you can be an ally? How can you be a support to a person with a vision and hearing loss? But I know this is a shared journey. I know I am not walking alone. I know people walk with me. I have my experiences, you have yours too, and sometimes it's just an opportunity for us to learn together, and we might screw it up sometimes. We'll just fix it for next time, that's all .Maybe something works? Great! Maybe something else we try doesn't work, so good that's okay. Next slide.

[New slide: Icon graphic: Black background with five yellow icons arranged in two rows. Top row, two people holding hands while walking; a bulldozer plowing through a chair, a tree, and a crowd of people. Bottom row: Dialogue bubble with a doorway, a paper with icons and text; stairs, lightbulb, and a person; and a flashlight; three people sitting around a table.]

>> Kaitlyn: These are ways you can be an ally. The first picture people walking side by side - icons of people walking side by side holding hands. I know I always want to do things myself. I really like to be independent, and it can be frustrating though. If I've got a friend who's willing to walk with me - if it's dark, if it's crowded, if it's something like that, and I can take somebody's hand, that's great. But it means I have to trust them to say okay, fine, I'm gonna go along with them, and the bonus is if you're walking side by side going to the theater that's. So nice. The next picture shows a bulldozer, and that's a way to be an ally, basically walk in front of me, clear my path, move the chairs, move the people. I have friends who tell me, ‘okay I am your bulldozer. I'll be your bulldozer for tonight. I'll be the one that clears the path.’ Because everybody ends up leaving their chairs scattered all around the place. So I appreciate when they function as a bulldozer. If there's small dogs or children that I am bound to trip over, because I don't see the lower periphery, the bulldozer will often say ‘okay I'm trying to get a kid out of the way here or let's go this way because we don't want to do that’. They let me know everything that's going on - screaming kid over there, or a small child over here that I might trip over - something that I might have to get out of the way of. There's a tree branch coming right towards my head, etc. So it's a shared responsibility to get us all navigating safely, and that's one of the things I appreciate are those bulldozers. And given my distance vision I sometimes can give people a heads up on things that they don't even know about. The next picture is three people sitting around a table. This is another ally thing - if you find yourself sitting at a table with somebody who has a vision loss, see if we can move to a brighter place, because you know we go to a lovely romantic restaurant and of course they have all the light dimmed, which means it's impossible for me to see the people I'm having dinner with. So be an ally ask for a light, move to a more lit space, carry a flashlight, have something available that we can use. I mean i've had flashlights go out on me but I remember being somewhere with somebody who had a flashlight that went out and it was like ‘oh look I have one I can help you out’. Carry a spare, and also think about all of the things that might be coming my way, or if you're working with somebody with a low vision, just be always aware of that environment. Think of the fact - think of like those wet floor signs which, of course I always hate because they put the sign saying caution the floor is wet on the part of the floor that's wet. I never really understood that because that means you're already slipping? Why didn't you tell me about the time before I got to that section? So I love when people tell me of hazards in my environment - let me know it's a wet floor. Let me know there's a pair of stairs, etc. Then I'm all good. I have interpreters sitting in front of me and they know I can't see their friend coming - my friend coming in, and so an interpreter sitting there might be, make sure that they let me know what's happening in the environment - ‘your friend just walked in the door, they're over there on the left side’. Or give me everything - give me what's happening in the environment, you know, don't just tell me the words that people are saying, tell me what's happening. If you post pictures on Facebook, that's fantastic, but sometimes they're hard to see, so please add alt texts to your images that you put on social media. Tell me what it is, who are those people? What's happening? ‘It's a picture of blah blah blah’. In this environment, these are all ways you can be an ally. I mean sometimes people ask me to go with them just because they don't want to have to drive alone in the dark, or be alone, and sometimes people are really kind and invite me because they prefer to drive me rather than let me ride on the train for an hour. I always feel guilty about asking people for rides because then again the onus is always on me. So sometimes it's really nice if people just take the initiative - bring me along, offer the opportunity, that's a sweet thing you can do, and if you never know what to do, just ask the person ‘how would you like me to do x y z?’ ‘What do you want to do about navigating this?’ So they can always tell you.

[New slide: Icons for website, email, Facebook and instagram are above their destinations. Under website: Usher Syndrome Coalition

Usher Syndrome Society

Foundation Fighting Blindness

Under email: Under Facebook and Instagram: @kaitlynmielke ]

>> Kaitlyn: So I wanted to make sure I had some time for Q & A, but these are some resources here that you got - if you want to learn anything more about vision loss, or usher syndrome, these are the places that you can find out that more information, and my contact is there if you want to talk to me directly about any of the kinds of things that i've been talking, and you can find me on Facebook and Instagram. Okay interpreters caught up. We are good to go. Regina, why don't you come back here see, if there's any questions we've got going - there she is. Okay. Oh, can we take the powerpoint off? We don't need it. Great, oh fabulous.

[Regina’s window pops up while the PowerPoint turns off.]

>> Regina: This is Regina. Hi! Thank you so much, that's great information, important information. We appreciate you sharing your journey. We wanted to open the floor now to see if there's anybody who has any questions for Kaitlyn about her experiences, or anything. Put your questions in the chat, and then I, Regina will sign them to Kaitlyn so she can see them from me. So please, if you have any questions - anything you want to ask, just do it now, put them in the chat. Okay, oh there we go. We've got some - oh my goodness, yeah yeah somebody says what does TC mean? I loved your presentation. I'm a theater nerd too but what is TC in your world?

>> Kaitlyn: In my world it means total communication, which is a particular communication strategy that was used with me. It basically means people are signing and talking at the same time. It was the way that my parents communicated with me, it's not the way things are now. I think now it's bilingual bicultural education, so you're using one language or the other. ASL or English, but at my time it was two at the same time.

>> Regina: Okay, the next question asks, what are your three pet peeves of being blind?

>> Kaitlyn; Oh pet peeves, I have so many. What do I say? I think the mostly the one is when I'm walking with someone and somebody just suddenly says to me ‘look out’, and it's like look out for what? Look out for whatever it is - you know, it's just like I would rather somebody let me know something's coming or steer me to avoid it, but I get these people who just suddenly go ‘look out’ and it's like what are you talking about? So I prefer being told ‘there's a tree right in front of you, watch out for the tree branch over your head’ or ‘watch out for the curb right in front of you.’ But ‘look out’ means nothing to me, so that's one. Chairs - people not pushing in their chairs - I cannot tell you how many chairs I have tripped over. I cannot tell you how many backpacks I have tripped over. If there is something you have left on the floor, I'm gonna fall over it.

>> Regina: Regina says note to self. Okay here's another question, do you have experience with tactile communication, or what are your thoughts about it? There are some deafblind people who prefer to use tactile signs to communicate with hand over hand?

>> Kaitlyn: I have very limited experience with that because this is still an early part of my journey, and I'm still dependent on my sight for most communication, and at the same time - at the same time, I have some sensory issues because if someone grabs me, or grabs my hand without me seeing them being there, I have to retrain myself to be okay with people touching me when I really can't see them. It's a trust issue. It's a comfort issue. I'm still working on it.

>> Regina: Regina says oh that's really helpful to know that you know you have to go through that process. Do you see uh fire alarms or anything like that? What do you do in an arena?

>>> Kaitlyn: I didn't used to but interesting over the years i've become more sensitive to something that flashes either a real thing like an alarm that flashes but at the same time I also have a memory of light flashes that like a camera flash kind of stuff and sometimes that pops into my eye because of the retinitis that I have so sometimes a real flash can be a little bit traumatic for me because sometimes I don't know where it's all coming from and part of that is just the retinitis pigmentosa.

>> Regina: Another person was asking, what's the strangest question you've been asked? Because I know people ask you lots of questions, but what's the weirdest one that people ask you about being deafblind?

>> Kaitlyn: Well a lot of people say - well deafblind but you can drive right? And I'm just thinking, no. You know - I could drive in an emergency - if nobody else was on the road, I wouldn't be driving straight but I would could do it, so I know this whole idea - sometimes people ask me just stuff is like - could you think for a second before you ask a question, and now I can drive on you know I can drive a video game that's about it.

>> Regina: Someone says I relate so much to where we fit in. I have so many comments and thoughts about that not fitting in kind of thing, being deaf, deafblind. There's somebody else who said thank you so much for the story of your journey.

>> Kaitlyn: Well I appreciate everybody being here!

>> Regina: Another person asks, well it's nice to see you my old friend. It's nice that I know you've got a black background, and an interpreter, but what do you do with an interpreter of color? Do you like them to have light colored shirts, or what's your experience when you're dealing with a person of color in terms of communicating, and signing and clothing - what's the best thing for you?

>> Kaitlyn: It's a little bit of a challenge to ask for that because I’ve had a lot of experiences, and I think people have preferences - what I like might not be what some other person likes, especially in the theater, so my idea is mostly to check with the person. What's your preference? I'm always looking for a contrast, so clothing contrasting with the skin. So if you're a dark skinned person who's very dark, go a little lighter. If you're somebody who's more light skinned, you can go a little darker. But for me the lighting is almost more important than what you're wearing, and a plain background because then it allows me that contrast, so you know whatever really is helpful for that.

>> Regina: Another person says from being an effective advocate, a famous theater nerd, what else would you want people to know about you?

>> Kaitlyn: Oh, there's a lot of things about me. I don't know how much time we have, and I don't think we have a lot left, so theater nerd for sure. I'm also a writer, and I'm working on a book. I have friends on my tail to finish it. So I'm almost done with a book. I love to travel - ironically I love to sightsee. I love videos and video editing because I like to capture what I can see.

>> Regina: Regina says that's wonderful. Do you have more questions - if anybody has more questions I know they can get to you or if you want more information they can be in touch with you.

>> Kaitlyn: Right.

>> Regina: But I do want to thank you so much. I want you to be - I thank you Kaitlyn for being here, to share your story for everything - that was so rich.

>> Kaitlyn: And thank you Regina for managing it all for me, and I have to thank the interpreter who is still talking like a maniac trying to keep up with me because I know I sign really fast, but she's awesome, and I have to thank Deaf Equity because they gave me the opportunity to share my story with you, and I hope that everybody's walked away with something new.

>> Regina: Well thank you. I think we're done. We'll close for the evening. Thank you everybody who was here to watch, and we really appreciate it. Have a wonderful night everyone!

>> Kaitlyn: Thank you good night!

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