Monica speaks with Lucy Greco, a Web Accessibility Evangelist for the Universities of California. In this episode, Lucy shares her personal experience navigating the education system as a disabled student and how she now supports other students to create learning conditions that work for them.
“A person has to be highly educated to get an education, if you have a disability.” – Lucy Greco
- 01:58 When Lucy realized her personal and professional experience had come together to help the disability community
- 06:52 Lucy’s work with UC Berkeley and how it helps disabled students
- 07:39 The importance of remote access to education
- 13:20 Other types of tech that can help with college campus accessibility
- 15:56 Why it is so important to hire employees with disabilities
- 19:32 Why companies should work with universities and disability centers
- 21:09 Accessibility and education
- 23:10 The importance of universal design
- 27:18 The financial implications of being disabled
- 29:28 What is the process like to get accommodations in colleges and universities
- 32:32 How to better advocate for yourself
- 35:58 Lucy’s favorite technology
- 37:48 Virtual reality benefits for education
Disabled students have so much to offer, but their capacities are being hindered by technologies that are often not taking their needs into consideration.
In teaching disabled students how to use accessible technology, they are empowered to share those technologies and skills with others.
There are a variety of technological innovations that can be utilized in educational settings like 3D printing for tactile learning, braille embossers, live scribe pens for annotation, and so much more. The key is to get these resources into the hands of the students that need them.
The cost of accommodations are a huge burden on disabled students. Therefore, they often take longer to complete their degrees, and they still have to pay the extra tuition for extended time, which is ultimately inequitable.
Currently students and their guardians may not even be aware of the resources available to them. Make sure to reach out to the accessibility departments at your university and fight for your rights as much as feels possible. Everyone deserves a strong accessible education.
If you are a developer, focus on universal and human centric design to create broad usability. Function must be prioritized over aesthetics.
Consider hiring disabled developers to be a part of the design and innovation process to ensure that your product is easy for everyone to use, and to highlight possible blind spots in the developmental process.
Many educators are not effectively trained and equipped to support and to provide resources to disabled students. If you are part of a school system, consider providing resource teachers and workshops to equip students with the best possibility to succeed in their education.
Resources Mentioned in the Episode
- Dragon: The speech to text recognition software that Lucy mentions
- Braille Embosser: A printer that can print braille on paper documents.
- Tactile tablet (One Example): The device Lucy mentions where you can use a braille diagram that will provide the information audibly.
- Livescribe Pens: The pens Lucy mentions that can annotate a diagram.
- LinkedIn: Lucy Greco
- YouTube: Lucy Greco
- Twitter: @accessaces
- More about universal design
- Examples of accommodations that colleges may provide
- How high school students can help disabled students get accommodations in college
About Lucy Greco
Lucy Greco is the Web Accessibility Evangelist for UC Berkeley. She has been blind since birth. She first started using computers in 1985. Upon graduating from college, instead of continuing her interest in literature and physical therapy, Lucy became an accessible technology specialist. Since then, people have come to Lucy asking questions, such as: How can I experience email as a blind person? How can I experience using a word processor as a person with no hands? Lucy’s passion for access technology drove her to find the answers to these questions and more, and today she is working at improving her own and others skills through participation in the BATS community.
[00:00:06] Lucy: We’re putting out some really highly skilled, educated computer science students, or internet technology students, any of these fields. And we’re not mandating that they actually learn about disability, and learn about design and ideas of how to actually accommodate people. Yes, there may be 21 million, or whatever, people in the world with disabilities, but out of the 9 billion people that we have around the world, that means a large percentage of people have never met a person with a disability, and don’t know what their abilities are. They just don’t think about it.
[00:00:45] Monica (Recorded): Hi, welcome to Technically Sick. This podcast explores how technology can increase access to education, employment, transportation, and improve socialization for the disabled and chronic illness communities.
[00:01:00] I’m your host, Monica Michelle.
[00:01:05] [Music Ends]
[00:01:05] Today I’m gonna be speaking with Lucy Greco, a web accessibility evangelist for the Universities of California. She focuses on accessible education technology through electronic intervention at UC Berkeley. As a person with blindness, she’s had to navigate the educational system herself as a disabled student, and now supports other students to create learning conditions that will work for them. She believes that technology is a pathway to achieving goals for people with disabilities and feels that everyone should be able to take advantage of the opportunities that technology provides.
[00:01:42] Welcome to Lucy Greco.
[00:01:47] [Music Ends]
[00:01:47] Monica: Hi, Lucy, I’m Monica.
[00:01:49] Lucy: Hi, Monica. Glad to meet you, finally.
[00:01:52] Monica: After we had a lovely little Twitter chat today, and I’m hoping for so many more of those. [Laughs]
[00:01:56] Lucy: [Laughs]
[00:01:58] Monica: Lucy, when was it with all of your experience – you’ve had tremendous personal experience and professional experience – when did you realize that this was all going to come together to help the disability community?
[00:02:08] Lucy: I think I have two stories to tell on that, and one was when I was working. Before I went to the university, I was working as an in-home computer instructor and living skills teacher. I had a gentleman who had never cooked, he was 35 years old and depended on his wife and mother to cook for him his entire life, and I taught him how to cook.
[00:02:28] He had actually recently just lost his wife, and was having a really hard time, cuz all he could do was get takeout for his, three young children. I taught him how to cook and he all of a sudden said, “you know, first of all, I’m saving hundreds of dollars a month because we’re not doing takeout anymore.” It was fantastic. Teaching somebody how to be independent was really key and important to me. And I knew that everything I wanted to do from that point on would be that teaching independence.
[00:02:53] I think working with students at the university, specifically in their academic endeavors, I was working with a grad student who was an older student, who had taken a long time to get through her undergrad, because like you and I, she didn’t have any services necessarily and did not get accommodated, and she had a really difficult time reading. She had no way of coping with her reading disability that she had. She came in to work with me about two weeks into the semester of my first year working at Berkeley, and I taught her how to use literacy software that helped her read and then also helped her take notes and understand the material a little bit more effectively.
[00:03:34] She came in at around 11 o’clock in the morning and I set her up in the lab with the software and I said, “just feel free to stay here as long as you need to. here’s a couple of the books you’ll be using”, cuz we already had digital files of them and “just, experiment and play”. As I was closing up that night, I checked all the rooms before I was leaving, and she was still there! She was sitting there crying quietly and she was just so happy that she couldn’t do anything besides just cry for joy.
[00:04:03] She goes, “I can’t tell you how important it is for me to have learned what you just taught me. My entire life I felt stupid, and I felt less than everyone else, because I did not understand what I was reading and I could not read. And I felt that it was something wrong with me and that I was just not as good a person as I should be. And I’ve just read three books sitting here for the past four hours and understood them and got the information and absorbed it. And you’ve made me such a happy person”. Two years later she graduated from her master’s program and went into a PhD in education and specifically PhD in special education because she wanted to give to other students the same experience I gave her.
[00:04:50] Monica: That is a beautiful story, and it really illustrates, cuz I guarantee you a whole bunch of people just gasped and went, “yeah. That’s how I feel,” which is that when we’re disabled or we have learning differences, we often feel it’s our own fault. And that absolutely stops people from advocating for themselves or for looking for solutions.
[00:05:08] Lucy: Exactly. Being different means that you’re not worthy of the same things everyone else is. That woman – it was very heartwarming for me. Every time I think of the things I’ve done that are positive, it’s what keeps me going because being in accessibility, especially in a public institution, can be really soul crushing. And it’s only the positive things like that, and the stories like that, that are really key. I’ve had students come to me and not be able to speak for themselves and not be able to understand how to use technology at all.
[00:05:41] One of my favorite ones, the very first student I assessed at Berkeley, was a student with a learning disability, came in with his father, and would not speak up, would not talk about himself, would not talk about what his difficulties were. He’s a doctor today. And he would not have been a doctor without the technology I taught him. And it was really cute because when he was first doing his residency, he goes, “I have to tell you it’s so exciting. You taught me how to use dragon. All the doctors here are watching me use Dragon and they wanna use it now too. He became the person who taught other people how to use this tool.
[00:06:17] Monica: Can you just define, real quickly, for our audience who might not know what Dragon is?
[00:06:22] Lucy: Dragon is speech recognition software. And for him who had a problem literally being able to pick up the pencil, an inability to be able to type, being able to use speech recognition to type things in, and as a family doctor type in the notes, was completely liberating for him.
[00:06:41] Monica: That’s amazing. It’s one of those things that is life changing for someone who’s disabled and tremendously helpful for someone who’s temporarily abled.
[00:06:49] Lucy: Exactly. Exactly.
[00:06:52] Monica: So, I’ve been really excited to talk to you about so many things, but today we are going to be focusing on your work at UC Berkeley. I would love to know about what you were able to work on with UC Berkeley, with technology and disability, to I’m assuming help keep disabled students enrolled.
[00:07:09] Lucy: The idea is to keep the disabled students that are enrolled able to do their work and have an equal playing field to other students on campus. What we’re trying to do is make sure that a person with a disability can actually get the services they need, get the tools they need. If they have readings, make sure that those readings are in an accessible format for them. If they’re in a lab, making sure that any of the equipment in the lab is accessible for them to use.
[00:07:39] Monica: What are some of the things that you were finding that worked really well?
[00:07:44] Lucy: What we’re doing right now works great. Being able to access your education remotely has helped an awful lot of students, especially ones that were struggling before when there wasn’t remote options, are now thriving because they are able to go to classes a lot more effectively than they were in the past.
[00:08:03] We had a lot of students with chronic fatigue. Those students would have to take smaller course loads because they just couldn’t hike up all those hills on our campus and to the five to seven classes that students are required to take a semester. So, they had to take reduced course loads, and of course that increased the expense of them going to college.
[00:08:24] Being able to attend classes remotely is, I’d have to say, the number one game changer that we’ve seen in the past 10 years. It’s funny, I mean, before the pandemic everybody thought that remote learning was happening, and it was just this thing, but it actually is really, really important to students with disabilities, especially those who may have mobility impairments, or people who have things like chronic fatigue, or may not have the energy or the strength.
[00:08:53] I mean, early on in my career at Berkeley, as far back as 2006, we had a student who absolutely needed remote learning, and it was really hard for her to complete her education. She had lupus and it was really tough, she just couldn’t get out of bed in the morning. And if she couldn’t get out of bed, she would either miss her class or have to count on somebody else to take notes for her.
[00:09:17] We were able to get a couple of her classes remote streamed to her dorm room. It was really difficult. And inevitably she ended up having to drop out because we just couldn’t get all of her course load conveyed to her in a way that she could take it and use it. It was very sad, and it’s quite depressing, but it is something that we used to see a lot more frequently.
[00:09:40] And now that everybody kind of knows how to do the online teaching thing, they might not like it, but they know how to do it, and the technology exists, we’ve got a lot more students who have that as an accommodation and can get that very easily and very effectively.
[00:09:57] Monica: So, this is a COVID thing that we’ve spent all these years being told that we can’t do the online learning. Now with COVID moving us forward, do you see this staying or do you see this being a backslide situation as more and more people go back to school?
[00:10:13] Lucy: I see classes not being offered by default online, but as an accommodation. It is now a set-in-stone accommodation that students can use and will use in the future. We’re not going backwards and giving up this remote learning idea. It’s here to stay, at least at Berkeley. I mean, we already have students who have this as an accommodation.
[00:10:35] Let’s be frank, everybody says the pandemic is on its way out. No, it’s not. I still am getting constant notifications daily telling me that there’s been a workplace exposure notification. We have students who are immunocompromised, they can’t go into that environment, but they can take their education, and this is a well-accepted academic accommodation now. It’s not going away, thank God. And I think it’s giving a lot more people access to education than had it before
[00:11:05] Monica: You’re gonna make me like tear up either from gratitude or jealousy. I went to school before any of this was available and being mobility compromised, trying to sit in those little chairs for two to three hour lab classes, would be like brutal. It definitely changed what my major was going to be and how long I stayed in school.
[00:11:25] Lucy: That’s exactly it, is we all have to make those compromises of people with disabilities. I went to university in the late eighties, early nineties, and I did not have nearly the accommodations that students do today. It was tough. It was really tough. It took me eight years to finish my university. I could not take a full course load. I was at the bare minimum before they would make me drop out completely before I could finish my degree. It was really tough. I had a computer, I was one of the first people to use a computer in my own circle of friends, and it helped, but it was just the bare minimum.
[00:12:02] My career plans were to be a physical therapist and I could not do it. Getting tactile graphics as a blind person is what I would need for the anatomy classes. We produce these for students now. It takes time and it takes a lot of effort, but we have teams that know how to do this. They get 3D printed models of biology symbols. You give somebody a 3D printed heart and they can actually look at the heart and understand it a lot better, instead of just looking at the printed page.
[00:12:32] Even people who are not necessarily blind would actually benefit from those because tactile learners, putting their hands on something and engaging with it really, really helps. So, I couldn’t become a physical therapist. So instead, what did I do? I turned to the tool that did make my life easier and became a technologist.
[00:12:49] Monica: We both have that in common with the early adopting. I’m an obsessive early adopter. I’m Silicon Valley’s happy person that will always grab onto all of that. You bring up such an interesting point about why this is important. Because apparently, it’s not important enough that just some of us get to actually learn, it’s also that it helps everyone.
[00:13:10] Zoom classes help people who have transportation issues. They help with people who just don’t want to be in a group full of people. There’s so many things that this can help with. And the 3d printing is something that really excites me. Are there ways that you’re seeing these “forefront of technologies” helping in college campus accessibility?
[00:13:29] Lucy: Let me tell you about a project I saw about three to four years ago. A woman was researching ways to teach med students. And this was not students with disabilities, but she was working on how to actually teach how the neurons and the brain worked and how the proteins built up the neurons. And she created these 3D models that, first of all were fun to play with. But second of all, were really informative and real education to actually demonstrate how one protein strand attached to another protein strand and how they folded. She was working on this for sighted med students, students going into neurology.
[00:14:09] It actually was so helpful for blind students that she actually worked on creating more models and a lot more information, doing an entire spinal cord neuro mapping in 3D printing. It was just absolutely amazing, and astounding to me.
[00:14:26] When I first started at Berkeley, we had an alternative media center and, in those days, it consisted of a rapid document feeder scanner, and a spine cutter for the book, and that was it. That was the technology we used. And we went in, and we scanned the books and perform OCR on them. And that was all we could offer.
[00:14:44] Today we have a 3D printer in our alternative media center. We have braille embossers. We have used a tactile tablet that you put the braille diagram down on and then the student can feel it and it will actually give them more information through the computer audibly. We’ve used things like live scribe pens for students. The live scribe pen can annotate a diagram. So, then the student can move through the diagram, and tap on the diagram, and find out more information about it.
[00:15:16] I mean, there’s just so much wonderful stuff happening. I’m excited about 3D printing. And for me, the big disappointment is that I can’t actually use any of the 3D printers that are out there right now. Some blind people have been able to jury rig and get it working. But since it’s just a toy for me, I can’t justify a toy that’s gonna be really tough for me to use, and also uses a lot of consumables. I still have to wait to get my own 3D printer, but if one of your listers wants to send me one, I’d love to play with it.
[00:15:48] Monica: Me too. There are so many projects I wanna play with and try. I have a laser cutter, but I still have not pulled the plug on the 3D printer. But you bring up something really important as you’re talking about this 3D printer, which if you could play with, I am going to bet on you to be a really good innovator, but the technology itself is not accessible to you. What can we do to start convincing those who are making new technologies to consider the disability community and the disability community’s needs?
[00:16:19] Lucy: Here’s my favorite tagline, you’ll see me say it everywhere: “work with people with disabilities, bring them into your teams, get them employed on your projects, have them be a part of the design, and the innovation, and the goals.” Anybody can tell you that if you have some form of diversity on a project team, you’ve just increased the saleability of that project and the people that that project can be marketed to. Have people with disabilities be part of it, and you’re gonna have more effectiveness, and more people who can use it.
[00:16:51] Microsoft were the ones to first say it. When you have a deaf person sitting in the cube, over the cube wall, the person working on the video player, or some form of meeting tool, is not going to neglect putting captions into that tool. If you have a person who has, motor impairments, and the product can’t be used by that person because you’ve made it so that they can’t use their mouse, or their mouse alternative, or use a keyboard to get through the tool, if they’re on your team, the team is going to think about it and they’re gonna have kind of that constant reminder.
[00:17:26] And it’s not even a reminder, it’s more of a, “oh, hey, Mary’s on our team. We better make sure Mary can use the product too”. Or, “Mary found that she can’t actually tab through the interface. Maybe we’d better make it so that she could tab through the interface, because after all, she wrote the back end of this thing, she better be able to use the front end as well”.
[00:17:46] Monica: I like what you’re saying a lot. And what I’m concerned about is that tech leaders seem to, at this point, be considering disability as a niche, instead of if you are planning products that incorporate disability needs it actually end up helping everyone. It makes it an easier product for everyone to use.
[00:18:05] Lucy: 100%. Let’s look at what happened again with our lovely pandemic and video software. Who became the world leader? Who had the most meetings within three weeks after the pandemic? Zoom. And that’s because Zoom was accessible and people liked using it. It was a much easier product to use than WebEx or all those other products.
[00:18:27] Monica: I’m trying to remember the name of the product before and I’m blanking on it, but it had been available forever and wasn’t the product that ended up getting used during the pandemic, which was surprising. Skype! It had a good five years ahead of Zoom.
[00:18:40] Lucy: Well, and it was actually very good at the beginning of its’ life. When Skype first came out, it was actually accessible. It was really cool. And once again, I did my early adopter thing and used it quite frequently and I can’t use it today. It still exists, but I just can’t use it. I can’t find the incoming call fast enough, the keyboard shortcuts aren’t working reliably, but Zoom just works.
[00:19:05] Monica: And it also has the live transcription option, which I deeply enjoy. [Laughs]
[00:19:09] Lucy: Yeah, it’s, wonderful. I mean, it’s not accommodation worthy, live transcription, but it’s helpful for everyone. When you’re tired and watching your umpteenth zoom meeting of the day, that live transcription just helps you over that last hump of comprehension. It’s amazing. Zoom did some really good work for accessibility and they’re still pretty much a market leader.
[00:19:32] Monica: It’s impressive. I wonder what their board, I haven’t done the research into whether they’ve been hiring disabled workers or not, but I’d be really curious to find that out.
[00:19:40] Lucy: They’re really good at partnering with universities and disability centers and disability studies. Their customers give them access to the disabled users and do a lot of work with them, and early release. “Oh, hey, that’s not working well, or this is working well”. Because they have access to the customers who have people with disabilities using the tools and they listen to them and they engage with them.
[00:20:05] And most of all, they respond appropriately. That’s how they’re able to do it. I mean, they might be now a much larger company, but when they first started, several universities said, “we can work with you, but you’ve got to be more accessible than you are now”. And they jumped on board that ship and it paid off.
[00:20:23] Monica: What an interesting idea for technology groups to start doing that, to start working with universities to get access to those consumer groups.
[00:20:30] Lucy: It’s really key. I mean, we do that at Berkeley a lot. So, for example, when Berkeley switched over to the G suite applications, I specifically worked with people at Google filing bugs and issues with them left, right, and center. When we first adopted it, I could not use a Google doc.
[00:20:49] And today the Google Docs platform is actually my preference. I like using it much better than Microsoft Word. That’s because, they did a lot of work on the accessibility and they responded to things myself and other people from other universities also fed back to them as, “you know, you’ve got to make sure that this works”.
[00:21:09] Monica: So, it sounds like we have a lot of these technologies available. What’s stopping it from becoming a universal thing? I haven’t seen this level of ability and accessibility in other universities than UC Berkeley. What’s stopping us from getting this into high schools, junior highs, workforces?
[00:21:28] Lucy: The number one problem is education and awareness. We are not mandating that teachers in elementary schools, or K-12 in general, learn about accessibility. And then when a student with a disability goes into one of those classrooms through the K-12 system, we’re providing the student with a resource teacher, and taking away the responsibility from that classroom teacher to understand the disability and work with it.
[00:21:55] All of a sudden they’ve got this student who’s blind in their class and they’re horrified, “I don’t know what to do. I don’t know what to do”. And then the resource teacher comes in and takes care of the problem. And then two years later, the next student comes in and they’re still, “I don’t know what to do”. And the resource teacher is helping out the student again.
[00:22:11] But in our academic preparation for these teachers, we’re not mandating any kind of accessibility work and accessibility background. If you’re getting a teaching credential today, there’s no classes on disability and managing disability in your classroom.
[00:22:27] That’s actually the problem with technology as wealth – that we’re putting out some really highly skilled, educated computer science students, or internet technology students, or what have you, design, any of these fields, and we’re not mandating that they actually learn about disability, and learn about design, and ideas of how to actually accommodate people.
[00:22:51] Yes, there may be 21 million, or whatever, people in the world with disabilities, but out of the 9 billion people that we have around the world, that means a large percentage of people have never met a person with a disability, and don’t know what their abilities are. They just don’t think about it.
[00:23:10] I mean, I have on my YouTube channel, some videos about appliances, and how the design that appliances are going to today is fundamentally inaccessible, fundamentally unusable too. But if those designers had to try and design for disability, the products would be better, and everyone would be happier. I think that the problem is that we are not giving people any exposure to disability, and the difficulties of people with disabilities to interact with our modern environment, for them to actually understand how to fix it.
[00:23:45] I look at the next big thing, autonomous vehicles, and they’re gonna be great and it’s gonna be wonderful. It’s gonna reduce accidents on the road. But there’s a big fear in the blind community that we won’t be able to use these vehicles because the control system is gonna be completely inaccessible to us, because the people who will drive these autonomous vehicles are the people who are driving today, which means sighted people.
[00:24:09] Very few of these companies are actually designing their autonomous vehicles with an interface that can be manipulated by a person who’s blind. I actually got a user study invitation that specifically said, “you must be able to drive before you can participate in this autonomous car study”.
[00:24:29] Monica: I feel the frustration. [Laughs]
[00:24:31] Lucy: Yeah. [Laughs] People with disabilities have a disability, and some people have multiple disabilities, but we have so much more to offer, and so much more ability that we do have that’s hindered and stifled by these technologies that are just being created by people who don’t know we exist.
[00:24:51] Monica: In Hollywood, there’s a new thing where there’s a group of scientists that have come together as a think tank where directors and producers and writers can just call this place up or go over there and find out all about like the science of wormholes or the science of time travel. And they can make it realistic.
[00:25:07] It’d be so interesting if we could create a think tank of disabilities so that designers would have that sort of ability to go, “I’m making a car. What would someone with hyper mobility or someone with sight differences need for this?” It would be just a new way to work on that.
[00:25:23] Lucy: Exactly. Let’s go back to your car. Okay, so we’re making a car and maybe it’s not autonomous yet, but what about the passenger who’s blind in the car that wants to control the radio? Or, when we do road trips, it’s my job to control the audio book. You know, in a modern car, I can’t do that. I can’t control those elements of the vehicle because it’s all touch screen.
[00:25:45] Monica: I think that what I’ve heard the most from people who are working on fixing things that their frustration is, is that there’s so much to think about because there’s so many different types of disabilities. For me, it’s the car. I can’t get into most cars. They’re too low. So, I’ll dislocate, just trying to get in. For you, it’s the touch screens. It’d be really interesting to see if there could be some sort of class to teach a universal design that would work for everyone and make everything easier.
[00:26:10] Lucy: Exactly – how to actually think about things with a human-centric design. You can’t tell me that all these devices we’re coming up with right now are human-centric. They’re not. It’s funny, one of the appliances that I’ve done a video on, a technician came out to help me actually label the device and make sure that I had tactile markers to be able to actually control the device.
[00:26:34] And he goes, “this would help all of my customers because inevitably people put this thing in their garage and they can’t see the buttons. Or the screen is too dim because it’s a dark dingy garage and it’s in a position where, you know, it’s hard to reach and you can’t unload the stuff from it because the car’s in the way”. All these things. He said, “yeah, I have these problems every day with the people I’m seeing and the people who design it just thought, well, this looks flashy and cool. Let’s put the lights on it so that they blink and are not good contrast colors because it looks great.
[00:27:10] Monica: Aesthetics over function is one of the things that brings me to an absolute rage.
[00:27:16] Lucy: Completely. Absolutely. The fact that we have a marketplace that lets you pay more for a different color of a product, what is wrong with us? Why would the black item cost more than the chrome item? Like isn’t chrome prettier? I don’t know.
[00:27:34] Monica: You bring up a really good point here, which drives me to distraction, which is the cost of things. To be disabled is deeply expensive. And if you’re going to buy something that you need for school, which was my issue, when I was going to school, I was very poor, everything I needed had to have the highest-level package because the highest level package is what had the ADA function. So, like when I’m looking to buy a car, I need to buy something with all of the software that will stop for me. So, that’s going to be an extra $6,000. It’s definitely frustrating. [Laughs]
[00:28:06] Lucy: We call it the disability tax.
[00:28:08] Monica: Yes! Added to a pink tax is really fun.
[00:28:12] Lucy: Yeah, it’s really quite gross. I keep going back to the pandemic, but let’s talk about COVID testing. The fact that there are two COVID tests that I know of that are quote “accessible”, and I have one of them, and I don’t know who thought that that was accessible, because it’s not. But the other one, you pay $600 for the reader and $70 per test. That’s a huge investment that people can’t afford to make. It definitely means that people with disabilities, who are blind, won’t be able to use these tests.
[00:28:44] The other one, the one that I do have, I took all the packaging out and I was ready to go and ready to open it, and I was listening to the video, and they want me to find a tiny little hole, and they want me to count five drops, not gonna happen. I won’t know if I dropped two drops or ten drops. It’s just not gonna happen. And somebody declared this thing accessible. So, the federal government set these out as the accessible tests. It costs $49. I think normal COVID testing is about $12 to $20.
[00:29:15] Monica: I think I paid $20 for my last test.
[00:29:17] Lucy: Yeah, so being blind, we have to pay $600 for a reader and $70 a shot for a test or $49 for one that you’re gonna need help with anyways.
[00:29:28] Monica: So, discussing this cost with college, I’ve discussed with a lot of people who are disabled who’ve have had actual people have to sit next to them and take the notes for them or transcribe, or translate, and that’s deeply expensive for them. Are these autonomous options that are coming in, like the little readers pen, are any of these coming close to an option?
[00:29:51] Lucy: Some of them are, but you know, students who are paying for these out of their own pockets need to be better advocates because as a university, we’re obligated to provide those services. So, we pay the note taker. We are now actually providing students with the note taking software that they use. We just actually did a huge agreement with a bunch of different assistive technology vendors to provide things like note taking software and literacy software that we can buy at a lower cost and then give to our students for free.
[00:30:24] We should not be charging our students to use services that they need as an accommodation. We pay well over a million dollars a year to pay note takers, to take notes in classes. That’s not something the student should be paying for. If it is, something’s wrong in that equation. Across most of the U.S. students going to university should be able to receive rehabilitative services to support them. So, the blind student can get a computer with a screen reader, but a lot of students aren’t even aware that those services exist. And it’s really hard to go through the bureaucracy of applying for it. And sometimes they get denied for stupid reasons.
[00:31:04] I had these two students, several years ago, they were twin sisters, and they were actual clients at the Department of Rehabilitation, and they needed a closed-circuit TV for reading large print. The Department of Rehabilitation insisted that they could not have the same case worker. They had to have separate case workers, even though they lived in the same city. One of the case workers got the student their equipment within two weeks, easy, no problem, no arguments.
[00:31:32] Completely similar cases, they were even taking the same step program of study, and the other rehabilitation counselor denied buying the equipment for that other student, for no reason, just that you don’t need to have a CCTV. You should find some other way of reading your textbooks. That is a serious problem. It’s up to an individual to give a student some kind of services like that.
[00:31:57] And in some cases, it’s up to the university to provide service. There are a lot of students who go to universities and don’t realize that that university has an obligation to provide them with service. You and I who went to school a little while ago, know what it’s like to fight for your rights. But I think students today don’t actually fight enough for their rights and don’t demand the services that they have an entitlement to.
[00:32:22] Monica: It’s kind of you to say a little while ago. It was actually a long, long while ago, [Laughs] but I actually wasn’t good at fighting for my rights, and it ended up with me almost having to drop out of high school. I still have trouble with the fighting for things because of exhaustion. What are some of the ways that you think that people could be better advocates? How can we, we’re already so taxed?
[00:32:44] Lucy: It’s exhausting. Even just getting some accommodations at work sometimes are exhausting. Every time I have to go and fill in my timecard, I’m like, “for crying out loud, why do this this have to be so painful?” The only way it can be better, I think, is if the products become more accessible. It’s not gonna happen in our lifetime, sadly, but I think we are getting a better environment and it’s slow and constant.
[00:33:08] I can’t tell you how to be a better advocate because everyone has their own personality and their own strengths. I mean, for me, I’m a loud mouthed Italian and I will yell to the rooftops for what I need and I’ll make sure everyone knows it, but a lot of people’s personalities, and who are brought up as people with disabilities, don’t want to be that loud mouth person. They don’t wanna stick out, and they shouldn’t have to, but sadly, it’s the only way to get what you need. And I can’t tell you how to fix that problem.
[00:33:39] Monica: That’s fair. It’s one of the problems I keep asking about just to see if someone has a good solution for it. I have it for political activism. There’s some incredible apps that are all done in text form. And that’s really good for those of us who have issues with like talking on the phone, or at least there’s the text to speech options that I can use, but I’ve yet to find one for in person advocacy of school boards.
[00:34:03] Lucy: Yeah, it’s really tough. A person has to be highly educated to get an education, if you have a disability.
[00:34:10] Monica: That’s a beautiful quote.
[00:34:12] Lucy: If you don’t know what your rights are and you don’t know where you’re supposed to get those rights, nobody’s gonna reach out and find you. It’s really interesting. My parents used to tell us a story about how, when my brother, who was the first one on our family born with blindness, when he was born a woman showed up while my mother was still in the hospital, and started guiding them to the services and started pointing them in the right way.
[00:34:37] My parents loved that woman for the rest of her life. She was a wonderful person. You don’t often think of somebody loving that social worker that comes to you in the hospital to dig you outta trouble. But they respected her for the rest of their life. Everything she said that needed to happen happened. But not everybody gets that. More often than not, you have a child with a disability, and you’re sent home and it’s like, now it’s up to you.
[00:35:00] They luckily had this person who helped them and showed them what they needed, and realized, “oh no, they can’t speak English so I’m gonna bring an interpreter with me” and made sure that when both of us were going to school, that they helped them put us in the school that actually had the services that we needed. But as my mother often said, “not everybody has a Mrs. Jones”. They think that Mrs. Jones is what made my brother and I as effective individuals as we are, and aggressively able to advocate for ourselves because she taught us all that.
[00:35:31] Monica: She sounds incredibly kind. That’s the sort of help that I wish had been around when I was trying to work through the IEPs with my kids and all the other [Laughs] exhaustion of education and mental health.
[00:35:44] Lucy: It’s really sad because those people do exist. But as a society, we don’t appreciate them enough and pay them enough. So, it’s like the lowest paying work out there.
[00:35:54] Monica: We could have an entire show on that one. [Laughs].
[00:35:57] Lucy: [Laughs]
[00:35:58] Monica: What is the technology you are the most looking forward to existing?
[00:36:04] Lucy: Ooh. It’s gotta be autonomous cars because I can’t tell you how frustrated I am that I can’t jump in the car and go to the grocery store and pick up my own things. Some people will say, “oh, a barcode scanner to walk through the grocery”. No, no, no. I’m fine with asking somebody at the store to help me walk around the store, but getting to the store is the big thing for me.
[00:36:25] Monica: I’m exactly the same as you. I’m desperate for the autonomous vehicle. And I think one of the most frustrating things I experience with disability is not having things my own way. That loss of autonomy. If I’m not able to go there, my husband will choose brands or things that are not the thing I wanted. And I just want to be there to just make sure it gets done the way I want it done.
[00:36:45] Lucy: My husband goes crazy with me sometimes in the store, because I’ll say, “what’s on the shelves next to us now?” And get him to narrate them to me. And it’s like, I wonder if I’m missing the next best product. “Is that a package? Is there a package of something on that shelf that has my name written all over it that I just don’t know about?”
[00:37:02] Monica: And grocery store FOMO is a real thing. You do make a wonderful point . Some day we will have to do an episode about why disability money is not as green as other money, because I would spend so much more money and time in places if they did certain things. You are looking to actively buy things and probably would be willing to buy things for the school, if you were able to see and find them.
[00:37:34] Lucy: Then you should talk to people in the gaming industry, because the reason gaming is now becoming more accessible is because when they started having mandates, they realized that, “wait a minute, these disabled people are spending a lot more money than the non-disabled people on the more accessible games”.
[00:37:43] Monica: We have to talk gaming someday.
[00:37:45] Lucy: Yea. [Laughs]
[00:37:48] Monica: [Laughs] I’m obsessed with virtual reality. It’s one of the things I am absolutely passionate about for the future of education and disability. For me personally, the big issue is being in the classroom for long periods of time, getting to the classroom, parking, getting in cars, all of it was just so agonizingly painful that by the time I got to class, I would just be crying.
[00:38:09] And because I have Ehlers Danlos, my joints don’t work properly. And it was back in the day before we would have recorders and phones. This was a long time ago. We’d have to long hand write. And there was days I would have to pull my pencil out of my hands because my hands wouldn’t open and I would have to curl up and wait another hour before trying to drive home. The idea of virtual reality is such an amazing idea for classrooms.
[00:38:33] Lucy: It’s actually cost effective. When you think of teaching med students how to do surgery, there is a massive shortage of medical cadavers, but in virtual reality they can dissect the same body over and over and over again.
[00:38:48] Monica: I love that aspect of the reusability, the lack of needing to have the classrooms. And we’re gonna see this more and more – long COVID is a thing. We have a lot of young people who got COVID that are starting to experience long COVID, They’re going to need to be laying down during class. They will need virtual reality, even sitting up for a Zoom class is going to be too much. Meta seems to be interested, Facebook seems to be interested in working on this, to allow for more things where you’re able to lay down and work.
[00:39:17] Lucy: I talked to their head of accessibility and said, “as soon as you have something for me to test, you need to bring me in to test. Cuz I want to test that badly”. And I teased him because every other product he’s worked on, I’ve actually tested for him.
[00:39:30] Monica: You’re making me a little jealous. I’ve only been on the Facebook campus once and I was like, “Oh, there’s so much to say”. [Laughs]
[00:39:37] Lucy: I’ve only been there once as well, but when he worked at other companies I’ve helped him test those products that he worked at before, so. [Laughs]
[00:39:44] Monica: There’s so many things we’ve discussed about accessibility in school, and it’s such a passionate project of mine [Laughs] because I’ve talked to so many people who’ve abandoned their educations because of access.
[00:39:56] Lucy: Yeah. It’s not pretty, it’s really not pretty. Two manufacturers are about to come out with a tactile tablet, which will be like a full page display so a blind person can get like, immediate tactile diagrams. I’m thinking that students who’ve tried to do data and data visualizations and had to drop out and couldn’t do data visualizations will now have that ability. And it’s just so exciting for me.
[00:40:19] Monica: It’s exciting for the people, and it’s exciting for society. These are a lot of people who by nature learned to think outside the box. These are amazing thinkers and we’re losing out on their perspective.
[00:40:31] Lucy: Exactly.
[00:40:33] Monica: Oh, I can’t thank you enough for your time. I hope I get to chat with you again very soon.
[00:40:38] Lucy: You’re welcome. I appreciated doing it.
[00:40:43] Monica (Recorded): Thanks for listening to my conversation with Lucy Greco. Lucy mentioned on multiple occasions that the pandemic allowed for the more widespread adaptation of perhaps the most helpful tech intervention in the education space: remote learning.
[00:41:00] When I was in high school, we did not have this technology and I lost so much time and instruction due to dealing with my own healthcare. My youngest child is doing remote learning high school, and it has been amazing from allowing the flexibility for my child to deal with their own mental and physical health challenges, to not making me have to figure out all of the transportation to and from school.
[00:41:26] The takeaway learnings from this episode are:
[00:41:30] 1) Disabled students have so much to offer, but their capacities are being hindered by technologies that are often not taking their needs into consideration.
[00:41:41] 2) In teaching disabled students how to use accessible technology, they are empowered to share those technologies and skills with others.
[00:41:52] 3) There are a variety of technological innovations that can be utilized in educational settings like 3D printing for tactile learning, braille embossers, live scribe pens for annotation, and so much more. The key is to get these resources into the hands of the students that need them.
[00:42:15] 4) The cost of accommodations are a huge burden on disabled students. Therefore, they often take longer to complete their degrees, and they still have to pay the extra tuition for extended time, which is ultimately inequitable.
[00:42:33] The actionable tips from this episode are:
[00:42:37] 1) Currently students and their guardians may not even be aware of the resources available to them. Make sure to reach out to the accessibility departments at your university and fight for your rights as much as feels possible. Everyone deserves a strong accessible education.
[00:42:57] 2) If you are a developer, focus on universal and human centric design to create broad usability. Function must be prioritized over aesthetics.
[00:43:11] 3) Consider hiring disabled developers to be a part of the design and innovation process to ensure that your product is easy for everyone to use, and to highlight possible blind spots in the developmental process.
[00:43:27] 4) Many educators are not effectively trained and equipped to support and to provide resources to disabled students. If you are part of a school system, consider providing resource teachers and workshops to equip students with the best possibility to succeed in their education.
[00:43:48] For more information on Lucy, check out our show notes.
[00:43:52] Every episode of Technically Sick has a page on empoweredus.org, where you can find extended show notes, including tips and takeaways, transcripts and relevant resource links.
[00:44:04] If you would like to share your own tips related to this topic, or just to connect with us, visit the Empowered Us contact page or reach out to us on our social channels.
[00:44:15] Technically Sick is an Empowered Us original, presented by Good Days, hosted by me, Monica Michelle. If you like this episode, be sure to rate and subscribe to our show, wherever you get your podcasts.
[00:44:33] [Music Ends]
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