Carrie Knopf - Video Transcript

[0:00]>> [Vianne Greek]: Our next speaker is Carrie Knopf. She is a member of the diversity equity and inclusion team and serves as Virginia Tech Carilion School of Medicine's Liaison to Virginia Tech's Services for Students with Disabilities. You've heard Mark referred to SSD. That's what that stands for: Services for Students with Disabilities. She will share her experience of what it's like being deaf in the professional setting and how our first hand knowledge of accommodations inspires her work on behalf of health science students with disabilities. Carrie is a disability rights advocate both at work and in the community. She is a co-chair of the Docs with Disabilities access and medicine group, which develops guidance for and assists medical schools with identifying opportunities for a more accessible and equitable educational environment. She is active in the Disability Alliance and Caucus at Virginia Tech and serves on the board of directors for the Disability Law Center of Virginia. She received her bachelor's degree in art history from the University of Virginia and a master's in arts administration from the University of New Orleans. Last year she became a certified professional for accessibility core concepts, the CPACC that Mark talked about through the International Association for Accessibility Professionals, IAAP. Take it  away Carrie. 

Carrie Knopf

[1:28] >> [Carrie Knopf]: Thank you all for joining us this evening. I'm going to start with a visual description of myself. It's something I do for all of my accessibility talks and most of my talks on other topics as well. I am a white woman with brown hair and green eyes. I am wearing a black top with purple and orange flowers and I am wearing hearing aids.

Diagnosed with bilateral sensorineural hearing loss

[1:57] When I was born in 1987, it was before universal newborn hearing screening was being done. And so, I like many young people and older people from past generations did not get screened and my hearing loss wasn't identified until I was about three or three-and-a-half. And then I wasn't developing speech as expected. And that was when I was first diagnosed with bilateral sensorineural hearing loss. And it was pretty severe to profound. And so I was fitted with hearing aids at age four and began speech therapy, which I did for 1-2 hours a day, five days a week for the next 5-6 years.

Raised oral due to misconceptions about deaf children

[2:54] I was raised oral, I was mainstreamed, and my parents did not expose me to American Sign Language when I was a child, which was a educational method for deaf and hard-of-hearing children because there was a lot of cultural misconceptions that children who were exposed to sign language would not develop in the same manner as they would if they were forced to speak and to wear hearing aids.

Accommodations in elementary school

[3:31] As a child when I was in elementary school middle school and high school, my accommodations were primarily having an FM system that allowed the teacher or the speaker's voice to be amplified more that was already provided by my hearing aid. I usually got priority seating in which I was the lucky kid who always sat in the very front of a class right in front of the teacher. So I never had the opportunity to goof off in school as a kid. 

People who are deaf or hard of hearing often need multiple accommodations that support various situations

[4:06] And I wanted to take a moment and explain a little bit about why I needed accommodation because often misconception that when someone has hearing aids or glasses or they receive an accommodation, that it completely levels the playing field. But for a lot of us with disability there's not just one device or one piece of accessible technology or one thing that will provide us equal access. Sometimes we need more than one. And sometimes the technology gets better so we just keep adding them to our arsenal because some of them work better in certain situations than others. 

The impact of the Americans for Disabilities Act (ADA)

[4:52]: Around the same time that I was diagnosed, the Americans with Disabilities Act was passed. And I wanted to recognize that because that act enabled myself and other members of what Senator Harkins called the American with Disabilities Act Generation or the ADA Generation, it allowed for many of us that have opportunities that were not always available to students and adults with disabilities.

[5:24] A lot of data and research has shown that a greater percentage of students in the ADA Generation and the generation coming up behind them, had the resources and educational experience and support services that enabled them to go to college and higher education and now they're coming to graduate school and medical school. And this is something that I feel is very positive and encouraging. We still have a ways to go.

[5:59] But the economic and educational difference that it can have on someone's life to have equal access to education through accommodations and technology is just really profound. 

Assistive technology and accommodations in college

[6:17] So as I said, K through 12, then I had the opportunity to go to college, which majority of deaf and hard of hearing student had previously been deferred to technical schools or into low income, low paying jobs because their hearing loss was associated with a loss of intelligence.

[6:44] But in 2005, I started my first semester at the University of Virginia. And that was when I started to scale up my accommodations.

CART – Communication Access Realtime Translation

And I started using CART which is having a captioner in the classroom who would sit with me.  I would have a laptop in front of me, they would have a laptop in front of them and they would essentially transcribe the faculty member's word for word. And it would pop up on my screen so that I could read it.

Note takers

[7:17] And this was also when I started getting note takers and the reason I share that is because CART alone was not sufficient and the note-takers alone were not sufficient.

Accommodations do not give people with disabilities "an edge" 

But there was also a common misconception that I had an edge over my classmates because I got people who took notes for me and I just had to go and pick up the notes that they had. But first of all, in order to get that I had to get to class, and if I wasn't in class I didn't get the notes. [LAUGHTER] But it was also…

[7:50] While it was incredibly helpful, especially in a 500 person class or 50 person class. There was also a little bit of work that came with it because at the end of it, I would have a transcript and I would have the notes.

Reconciling transcripts and notes proved to sometimes be problematic

But between trying to read the transcript in class and listen to the professor. I couldn't really take notes of my own. And so I'd have to go home and take the transcript and the notes from the two or three note takers that I had and try and combine those. And they didn't always agree a lot of time.

[8:24] I was an art history major and the dates would be… There would be three different dates and I'll be like, I don't know which one do I pick. But CART was also at a time when I've always started into the disability rights and disability advocacy because I started taking American Sign Language. And I took it for two-and-a-half years when I lived at UVA and my class wasn't just about the language I authored how up with the disability rights movement and how the disability rights and accessibility is very much a human right and a civil right. But it made it possible for so many more through the American Disabilities Act as well as I think the Internet and growing use of technology and accommodation.

Nowadays real-time remote captioning exists 

[9:14]: The reason I want to touch on that again is because the accommodations that I had in college are updated now. Because nowadays we have the remote real-time captioner, so students don't even have to have the person sitting next to them in class, which I thought was a little embarrassing at the time because I always had this like 50-year-old guy sitting next to me in class and everybody like, why is he sitting with her every day. But [LAUGHTER] anyway, great, wonderful human being. But when you're in your first semester of college, you got a lot of nerves as it is, sometimes you don't always want to stand out. But also college was wonderful time for me. 

Docs with Disabilities Movement

[10:10]: And a few years ago when I was just starting in the Student Affairs Department, I saw an article written by a woman named Lisa Meeks she’s founder of the Docs with Disabilities Movement. And she talked about why we needed accommodations and resources for medical students with disabilities. And I read this report which was sponsored by the AAMC and I went to the Dr. Knight and I said Dr. Knight and I would really like to do that. Like, do we have any students with disabilities? He was like, Oh, that's wonderful. I would love for you to take this on. And that was the beginning of my transition into not just working with our students with disabilities, but also being liaison for SSD for the whole Roanoke campus. 

The impact of the COVID-19 Pandemic

[11:08] And then about three years ago, something happened with the pandemic. And prior to the pandemic, my workplace accommodation had really just been a caption telephone. That was all I had. Because technology had made twoof the thing that I rely on the most for communication, which are email and text messaging, had become so prevalent in society that I didn't even really need to go to HR and ask for accommodation because I… Almost everybody was already available either by email or by text.

Masks, virtual conferencing, and captions

[11:45] But when the pandemic happened, masks and virtual conferencing started to create a whole new host of problems. And so I had to spend a lot of time with different folks trying to figure out how to get captions and how to supplementmasks and work around different things.

[12:11] The process was I think both about self advocacy, but it was also a time when I had to really learn how to not just use accommodation, but really find my voice in educating others and telling them like, okay, if you're going to be the meeting host, you got to turn on the caption, teaching them how to turn on the caption and there's a lot of persistence and patience in that. 

Tips for accessibility in the workplace

[12:44] So I wrote up a few thing that I wanted to share in terms of not just for me, but some general things that I think can be useful for people if you're trying to provide accommodation.

Ask people what they need and practice using the technology

[12:59] First of all, is to ask people what they want and what they need. Then have a practice ahead of time. We've all been very patient tonight and moving, rolling with some of the hiccups that we've had with captions, but it's not uncommon for people to say, Hey, we're going to have the accommodations, and when the accommodations aren’t working. They go ahead and start the presentation for everybody else and they're like, "don't worry, we'll get you… we’ll get you your stuff in a few minutes" and then 20 or 30 min later, the caption starts working, but then you've missed the whole lecture or the whole meeting, and it's hard to catch up.

Ask for resources, it's a community effort

[13:41] Another one I wanted to suggest is definitely ask for help and ask for resources from those around you, whether it's accessible technology or websites like AskJan, or your HR department, because when it comes to implementing accessible technology and accommodations, it's very much a community effort.

The reality of captions (or "craptions") at work

[14:15]  And then the last thing I wanted to touch on a little bit is how my experience with accommodations have impacted my work.

First of all with my team, we all turn on the captions or we call them the “craptions” and we will laugh but the captions on… What happened this morning. It happens pretty much every day, but somebody was still yelling at the captions they're like  “No, that’s not what we’re saying”. And then when you try to correct the caption, they mess with you and they just make them even worse. So if it’s bad… like a seven, it’ll be like you thought that was bad I'm going to make the caption 10 on a scale of zero being bad and 10 being worse.

[15:07] Then the other thing that we'll do is I'll let my team know that I'm interrupting them. And we have a signal and I'll just do like well timeout, the captions are lagging or there's something incorrect. And I apologize for interrupting them, but just know that it's two-way that I work with my team in terms of implementing and using accommodations. 

Advocating for medical students with disabilities

[15:43] And then the other thing that I do, that shift from my accommodation to working with students. And that is to… There is an element of advocacy and education and trying to support medical students with disabilities because I truly believe that we want to have a healthcare workforce that is representative of the population and the population involves people with disabilities.

[16:23] And one of the first reactions that people have when they hear about that can be a knee-jerk reaction. They're worried about patient safety. Or they’re thinking about some person with disability that they know or have seen before or have run into and they're like, no, that's just won't work.

[16:44] But the reality is that when we shift our focus from what are they going to do? And we put the focus on the how, then we can start doing creative problem solving. And we can leverage technology that enables students to attend medical school with disabilities.

[17:03] And the way to think about this, is that if the students have met our standard or our criteria for admission, if they have done the same thing with all of their peers then they have a really good chance of being successful here. I'm not saying that every person with a disability is going to crack it and be an ace in medical school. I know that I wouldn't have done very well, but I caught my hand on fire in chemistry with the Bunsen burner in my first semester in college, that was when I knew that science is not going to be my area of study. 

Value of medical doctors with disabilities to the field of medicine

[17:52] Again so the value of medical for people with disabilities is to have a population representative of our community. But it also offers two benefits to medicine. The first being that doctors who have disabilities make great healthcare providers. They are empathetic, they are caring and they understand some of the nuances of working and living with a disability even if it's not the same or they are not on the same level in terms of the way that it impacts them. They have been shown to have greater understanding of patients and that translates into better patient care.

[18:37] And then they also do a really good job of taking their experiences  and helping their peers and faculty members and those around them to be more empathetic to have a greater understanding of some of the needs that come with the conditions, as well as the need for inclusion and support beyond just specifics of medical care, but some of the social and economic factors that come into play.

[19:09]: And then the last thing is that they may often choose to go into fields where they can make a difference or they can contribute from their first-hand knowledge and first-hand experience to the research and patient care. 

Deafness contributes to early retirement for physicians

[19:33] So I wanted to conclude was sharing with you something that I thought I would share as a deaf or hard of hearing person. And that is that hearing loss is actually one of the contributors to early, early physician retirement on basis of disability. So there is huge social and economic value to organization to cultivate a culture where physicians feel comfortable requesting and utilizing accommodations.

Resources

[20:03] So on that note, I wanted to recommend that you consider checking out Docs with Disabilities, the association of medical professionals with hearing losses (AMPHL) and/or the Stanford Medicine Alliance for disability inclusion and equity. Because if this is something you're interested in, then I've provided three great organizations that might have some articles and events things like that, if that is of interest. 

Questions

[20:32]>> [Vianne]: Thank you, Carrie. Any questions? [APPLAUSE] Any questions for Carrie? I have a question for Carrie. And Carrie has left the building. Carrie needs to come back in front of the camera, please [LAUGHTER].Now you're on the screen. Yes. So earlier today in the meeting, you used a tool that helps you carry on with the meeting. What was that?

[21:07]>> [Carrie]: The closed captioning? So the closed captions tonight I believe are being done by Google Slides. And that's one of the technologies that's come out since the pandemic and that Microsoft Office and Google both have the accessibility features built into the software or to the web page versus before we used to have to mish mash multiple pieces and kind of jerry rig it so that that you'd be able to have a presentation with a video recording and a PowerPoint with captioning.

>> [Vianne]: This morning you used Otter or something on your laptop?

>> Yeah.

>> What is Otter and why does it help you?

[21:59] >> [Carrie]: Well, Otter is a transcription app that is actually if you use captions in Zoom, then AI caption is being done by Otter. But I also use Otter as a note taking app because you can create a transcript for any meetings so that I can be watching the people that are talking and listening to the conversation from the transcript and later I'll just go back and highlight the things that are important that I want to remember. 

A technical interlude as we lost and regained captioning inside the room. 

[22:30]>> [Vianne]: I remember early on in the pandemic, Zoom did not have automated captions...

Dale, can you reload us our Google slide, please? We just lost caption in the room so Carrie can't read the question. So if we can get Google slides reloaded Dale, that'd be great. I have a feeling that Google Slides has a time limit attached to it. That would be something worth testing Mark with your accessible technologies. There he is. And do we have sound? Do we have words? Check. I'm not seeing a transcript yet, Dale.

>> You want me to go get him?

>> No, Dale is moving his mouse. or is that you? That's him, right? Yeah, there you go. He's working on it. Yeah. There you go. So now we have the screen back on here. 

Continuation of Questions and Comments

[23:47] [Vianne]: So what my story for you was, early on in the pandemic, we did not have captioning through Zoom, they relate to the game on that. And so while Virginia Tech had a Zoom contract, and everybody was on Zoom and we've been using Zoom for years, when it came time to get on Zoom with Carrie, that did not work. And so for every meeting where Carrie was involved, we had to use Google Meet because Google was ahead of the game and had captioning ready to go. And so that's just something to think about that, while your preferred tool may not have everything you need for accommodations.

[24:27]>> [Carrie]: I agree with that Vianne. And I got to tell you that this stuff is just happening so quickly. But now I really like using Teams because Teams has different features for accessibility. And I think the value in this is that a lot of people are starting to realize over and over again the way that the accessible technology doesn’t just make something accessible for people with disabilities, but makes life more convenient for everybody else too or perhaps makes it more accessible for them but for different reasons.

[25:02] An example, I can think about that is text messaging on our phones are these little text message audio clips that you can send to someone who prefers audio, so they are like oral text messages. And a lot of that technology was invented to help people with disabilities communicate better. But now it's becoming the mainstream.

[Addressing Mark] Anything to add on that? 

The benefits of captions for people learning other languages

[25:32] >> [Vianne]: Yes, I find that I use the technology myself, the captioning technology, especially because I'm learning Portuguese. My new son-in-law is from Brazil. And he uses the English subtitles along with spoken Portuguese or vice versa so he can learn English, and I can do the same thing learning Portuguese. So it's just very interesting that all of these different technologies help people beyond the ones that they were intended for.

>> Are there any other questions in the chat for our speakers? You have a question, all right. 

Upcoming physician shortage

[26:15]>> [Audience member Danny Cordova]: The upcoming physician shortage scares the bejesus out of me. So is Virginia Tech working at all with doctors who are out in the community thinking about retiring due to various disabilities that arise with age? You mentioned hearing loss, which is very common, but other things happen as well. And even if we can keep those doctors working part-time, it could be helpful to all of us.

[26:51]>> [Carrie]: That is a great question, I do not know, but I would think they are trying to give this more attention. I think a lot of it though it's just the culture and if the culture doesn't change... The organization needs to play a role in leading the cultural change. But I think it's not just the organization, I don't know, I think it would have to be all of us and we all have to do our part. 

The importance of hearing and eye screenings as we age

[27:26]>>[Kemi Bankole, chief diversity officer with VTCSOM]:  So with regards to that, I think what Carrie said is really important, just a cultural change with regards to what we need. As a geriatric psychiatrist, I have… Screening for hearing and vision is an integral part of what I do with my patients. And helping them understand that getting hearing aids is not a sign that you're about to die tomorrow, but it's actually something that's going to improve the quality of your life. And getting that feedback and information and understanding to… And for the most part it's usually not just the patient that's there with me, they're there with their partner or they’re with their children, or friends. And so helping them have that understanding is really important. There's not a day goes by in clinic that I do not have someone to tell a patient, please go get your hearing checked, or please go see the eye doctor, or the optometrist to get your vision checked. Because those things can be very impactful for their quality of life.

[28:47] >> [Dr. Hartman]: Well, I think it's a good point that trying to keep physicians working and functioning is very important. And I think we as physicians need to support each other as we get into those older years. I know it was somewhat of a challenge for me to accept the fact I needed hearing aids, and you'll notice that most of us that are married get hearing aids when we're 70s if we're not, we don't, but our wives make sure that we hear them. 

Closing remarks

[29:29] >> [Vianne]: Well then we'll close this out. Thank you everybody for coming to this presentation tonight. I want to also thank Carrie, and Dr. Hartman and Mark for coming in and speaking and sharing their experiences with us. And we will be posting this online fairly soon, the recording. And we'll make sure that the captions are working.

[29:52] I've been watching the captions all evening and it's interesting sometimes Google wins, sometimes Zoom wins. And so it's very interesting to see. A lot of time I'd look at Zoom and go, what are they saying? And then I'll look at Google and they got it right. And then sometimes it'd be reversed. So it'll be very interesting to see what the Virginia Tech version of automated captioning will do in comparison with Zoom and with Google Slides. So again, thank you all for coming and we will send you all an email when the videos are posted to the website. Thank you again.