HLOL Podcast Transcripts

Health Literacy

Making Health Information Accessible to People with Disabilities (HLOL #212)

Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and author of the book Health Literacy from A to Z: Practical Ways to Communicate Your Health Message. I also produce and host this podcast series, Health Literacy Out Loud.

Today, I’m talking with two guests. I’m talking with Liz Persaud, who is the Program and Outreach Manager for Tools for Life, which is Georgia’s Assistive Technology Act Program at the Center for Inclusive Design and Innovation, or CIDI, that is within the College of Design at Georgia Institute of Technology.

Liz is a nationally recognized public speaker and advocate, addressing the need to build bridges and solidify gaps between individuals living with and without disabilities. Liz does this through education, advocacy and a focus on technology and disability.

The other guest is John Rempel, who also works at CIDI, serving as a Quality Assurance Manager. John oversees initiatives related to digital accessibility and user experience. He has extensive training and experience in both disabilities and accessibility. Much of his work centers on low vision and blindness rehabilitation.

I learned of CIDI through their work with the US Centers for Disease Control, or CDC, on COVID-19 safety resources. I’m delighted that Liz and John accepted my invitation to talk more about this.

Welcome, both of you, to Health Literacy Out Loud.

John Rempel: Thank you. It’s good to be here.

Liz Persaud: Thank you so much, Helen. Yes, we’re so happy to be here. Hi, everyone.

Helen Osborne: Let’s take it from the very beginning. Making health information accessible to people with disabilities. Can you make clear for us what it is you’re talking about when we use that term?

Liz Persaud: Absolutely. John, I’ll kick off, and please jump in.

We absolutely believe in inclusion and accessibility. What that means in a nutshell is ensuring that everyone, no matter what your ability is, everything that you’ve gone through in life, your obstacles or the struggles that you’re dealing with, is able to access information. Absolutely it’s related to important health information.

We work in the space of individuals with disabilities, technology inclusion and accessibility, so it’s our life’s work, our passion, our everyday work to ensure that those materials, anything that we’re putting out in the world, is accessible and easily understandable by anyone that needs it.

That way, no one is less affected in a negative way and they just have access to this information in ways that they can understand it and read it on their own independently.

Helen Osborne: Thanks for that comprehensive overview about this. Of course, this makes sense. There’s nothing I would dispute about that. But can you share a little bit from the people-to-people end, some stories or examples about how accessible information really does make a difference, especially in terms of health?

Liz Persaud: Absolutely. The project that we’re working on is a CDC Foundation-funded project. It’s all about ensuring that the CDC guidances out there related to COVID-19 are understandable, accessible and in simple size plain language for a number of disability audiences.

We have very key specific audiences related to the project. But again, at the heart of what we do, John and I and the CIDI team at Georgia Tech are all about ensuring that all aspects of this project and this important public health information are accessible to individuals that are living with intellectual/developmental disabilities and ensuring that the information is universally designed and in a very plain language that’s easy to understand.

Individuals who are deaf maybe use ASL, or American Sign Language, interpretation. We’ve got videos about CDC and COVID guidance that we have certified deaf interpreters interpreting that information for individuals. It’s just, again, ensuring that folks have that.

John, do you want to touch on some of the accessibility in the digital world?

John Rempel: Sure. Liz is doing a great job covering some of these aspects. As Liz had mentioned, specific to the CDC project, we are focusing on populations that may use alternative means of communication and access.

Another area is individuals who are low vision or blind who are braille users who may prefer accessing COVID-19-related information via embossed braille, or even accessing it via a digital refreshable braille device that actually has pins that really emulate a braille page.

Helen Osborne: I was wondering how you would do that. How do we do braille digitally?

John Rempel: Right now, with the CDC project, we actually mail out the embossed braille to various organizations and individuals. But we also have a microsite that has the braille-ready materials that a person can access through a refreshable braille device as well if they choose to access that digitally.

Then more broadly from a health access standpoint, when you think of using apps on our phone or using our laptop or desktop, that access needs to be accessible for people with disabilities.

Very often, individuals will use various assistive technology solutions, such as screen readers for individuals who are blind who need that auditory feedback.

It’s making sure that the assistive technology is the right fit for them, as well as making sure that the digital content itself online is accessible for populations that may require access either through their assistive technology solutions or maybe individuals who are color blind or low vision who need higher contrast. That’s another key component to accessing content.

Helen Osborne: Thank you for all you’re doing and explaining it so clearly.

I know that you’re very involved with this project on COVID. But our podcasts go on forever, so I am curious about other topics that maybe could benefit by this.

My starting question is how do people access your accessible information? Someone needs to know about the resources from CIDI, or however else they can find it. Who goes to it? Is it the person who has trouble hearing, seeing or figuring things out perhaps? Or is it professionals that would go to your site and access this for the people they’re caring for and caring with?

Liz Persaud: All of the above, Helen. That’s one thing I love about our center.

I will say at the heart of what we do at CIDI, we have a number of different production units. We have the braille production department. We have an e-text department. We have captioning and described audio services. We have the UX and ICT accessibility department that John oversees. Then we have the assistive technology department as well.

Helen Osborne: That’s huge.

Liz Persaud: It’s a lot. Again, just making sure we’re all inclusive and providing accessible resources. To answer your question, it’s all of the above.

We do operate in some ways on a membership organization. We serve a lot of post-secondary institutions across the country, directly working with educational organizations to ensure that students at a young age are able to access their textbook materials in a certain way.

Helen Osborne: I want to ask this before you continue. Our podcast listeners are worldwide. Is this just for the US, or is this available to all? And is this service for free? You talked about memberships.

Liz Persaud: It depends on the type of service. We absolutely encourage folks to reach out to us. We serve primarily here in the US, but we’ve had some interesting work on the global level. That usually is when it comes to accessibility consulting or technical assistance.

But at the end of the day, I think John and I and everyone at CIDI are on the same page where we say, “Reach out to us and let’s have a conversation about what your needs are and how we can help.”

At the very least, we have a network of other organizations not only in the state of Georgia, but across the country, that we can get people connected to depending on their needs.

We never answer the phone or an email and say, “Sorry, we can’t help you.” Even if we are providing information and assistance, we’re always going to help get people connected to the resources they need.

Helen Osborne: That’s great. We’re going to have the URL, your website address, at the end of this podcast so people can go to that. It’ll also be on your web page.

John, what else do you want people to know?

John Rempel: Liz did a great job of providing the context of the various organizations and individuals we serve.

Also, Liz and I and our team do a lot of webinars and trainings, and some of those webinars have been recorded and archived and are freely available as a valuable resource to anyone who can benefit from them. Whether they are in the US, Australia or somewhere in Europe, they can certainly access those.

The Tools for Life team that Liz has worked with for a number of years has many of those archived webinars on assistive technology solutions and disability awareness topics.

Then I oversee a contract in the state of Georgia where many recordings and archives are available as well. It certainly can be applicable to anyone who would benefit from assistive technology and greater access to digital content online. Great free resources that anyone can access at any time.

Helen Osborne: Listening to you, it sounds like you have resources about what this is and why it’s important. You have access to information and ways people can make a difference.

I think that’s where I want to go in my questioning right now. I want to speak on behalf of the podcast listeners. They can be worldwide, as I said. We might be clinicians, public health folks, professors, teachers or students, anybody who wants to communicate better today than we did yesterday. We also share a common interest and passion about health literacy.

What tips and recommendations do you have for us, especially people who might be someplace that doesn’t have a big budget and don’t have much extra time, but they agree with you that this is needed? What do you recommend that we do every day?

Liz Persaud: I will absolutely jump in. John, I know you’ve got a lot to say about this, too.

I think at the beginning of the day, it’s very much an internal conversation about inclusive attitudes. If we can change our attitudes of mind, we can change so much in our world.

We need to be thinking about whoever is looking for resources. Why is it that we don’t already have them in place? The next step is “Where do I go to get these resources, to talk to someone about this?”

In the world of assistive technology, the word “assistive technology” or even just “technology” can sometimes scare people away. That doesn’t mean it’s got to be the most expensive talking computer out there in the world. It can be as simple as an app on your smartphone that helps you navigate or maybe even helps with calming anxiety. There are so many resources out there that it doesn’t have to be very expensive.

I think, again, it’s just ensuring that websites are accessible. I know John can touch on that. There are just very easy resources out there that people can do a quick scan of their website and understand, “Am I hitting the basic accessibility needs? Are my materials available in larger print? Is the font I’m using very light gray against a white background?” That would be difficult for anyone.

Helen Osborne: Oh, dear. Listening to you, Liz, I’m feeling a little chagrined. I’m not doing all those things. I’m a one-person business and I’m not doing it all, so I guess I’m asking on behalf of myself, too.

I am championing what you’re doing. Obviously, I’m a great believer in accessibility. But at times, I find it a bit overwhelming to do the right thing.

Liz Persaud: I understand that. We often say, “Don’t layer it on. Bake it in.” It’s a great way of not thinking about accessibility after the fact. Think about it as you’re designing and creating, and that’ll make it easier.

You read that in my bio. I live to bridge those gaps. Let’s stop thinking about people with disabilities and people without disabilities, or accessible and non-accessible.

John and I work in that space of universal design and inclusivity. If we’re thinking about it from Step 1 or even pre-planning stages, then it isn’t so daunting. We’ve got that checklist and we can say, “Hey, we’ve done it.” It’s that habit we’ve got to get into.

Helen Osborne: Thank you. I like that, the habit. I sometimes talk about making health literacy a habit.

John, what else do you want us to know?

John Rempel: All really good points that Liz made. I would just add that it’s absolutely crucial, as Liz said, to bake it in at the earliest stage as possible when it comes to accessibility.

Include people with disabilities in the process. If it’s a small organization you’re with or your organization doesn’t have individuals with disabilities, reach out to the community.

Liz Persaud: Absolutely.

John Rempel: The majority of communities have organizations that serve individuals who are blind or low vision, individuals who are deaf/hard of hearing or individuals who may have ambulatory challenges.

Just reach out to people and get their feedback. I would never be presumptuous enough to think that I know what Liz’s exact needs are, or vice versa.

It really is impossible to predict what the needs are or what the feedback is until you actually pull in people with disabilities and they can speak about it from a personal and daily experience. I would say that that’s absolutely essential to get that buy-in.

As Liz alluded to as well, we are all advocates in this arena. Very often, it takes a combination of executive buy-in as well as having the accessibility evangelists on the frontlines and middle management.

Helen Osborne: Listening to both of you, like many worthy things that we do in life, it takes a team. You’re talking about reaching out to the people who bring their own distinct set of needs, values and things they need to do. You also talked about that higher level that makes it happen. It sounds like they all need to come together.

In the few moments we have left, I invite you to put on your future-looking hats and tell me what you think it might look like if everything worked as well as it could a few years ahead.

Liz Persaud: I love that question, Helen. If everything was perfect and worked the way it could, we wouldn’t be having conversations like this. We would be on your podcast just talking about projects and talking about the different people working on them.

I would hope that there wouldn’t be centers to make things so specialized for people with disabilities. It would just be engrained in the forefront.

The other thing that I want to just add on to what John said, and this definitely goes with that future thinking, is there’s a very important saying in the disability community that I think many of your listeners probably have heard before. But we often say, “Nothing about us without us.”

Helen Osborne: I’ve heard that.

Liz Persaud: I have a physical disability. I use a power wheelchair. I roll around this world and my community. The past year and a half I’ve been online. I’m always looking for people in the world who look like me. Why don’t we have more individuals with disabilities in the medical field or research field or lawyers? Why is that?

John is absolutely right. It’s about reaching out and making that inclusive environment, community and world.

That’s my future hope, that there won’t be these specialized conversations about people with and people without. It’ll be one collective aspect to our world.

Helen Osborne: I love the way you worded that. We could have focused more on the great materials you’re doing about COVID rather than the whys and background information. Thank you for putting up with this. Hopefully by what people are learning from you and the CIDI, we can all be moving forward.

John, what’s on your future hat?

John Rempel: I think corporate America is starting to understand the value and asset of individuals who may not necessarily fall into the “mainstream.”

Really, disabilities can be, and very often are, a strength. It allows a paradigm shift to encompass populations that designers/developers may not have even thought of.

As we all know, the percentage of individuals who are aging is increasing, so we will all likely have a disability at some point in our lives. Really looking at it from a broader perspective and serving a larger target audience that is more inclusive than what it has been in the past is not only a financial win for businesses but for productivity, quality of life and inclusion.

I see more and more corporate America starting to recognize that. They still have a long ways to go. I’m not going to be Pollyanna about it.

But I think if we can accomplish that, really recognizing disabilities as a strength and allowing the limited lens that sometimes life is seen through to be broadened to include more people, that shift would be monumental.

Helen Osborne: Thank you both. I’m hearing strings that I’ve heard throughout our conversation, where Liz talked about empowering individuals so everyone feels included, respected and not alone in this. Then John is talking about looking at the big picture through corporate America.

Thank you both so much for all you’re doing and sharing it with us on Health Literacy Out Loud.

I gave a teaser before. Please give the URL for CIDI where people can learn more information.

John Rempel: Sure. It’s www.CIDI.gatech.edu.

Helen Osborne: Thank you so much. You’re both terrific. I am your champion, too. Thank you for being guests on Health Literacy Out Loud. I learned a lot and I bet listeners did, too.

Liz Persaud: Thank you, Helen. I appreciate your time.

John Rempel: Thanks for having us.

Liz Persaud: Absolutely. Thanks for having us.

Helen Osborne: As we just heard from Liz Persaud and John Rempel, it is important to communicate health information to everyone, those with or without disabilities or challenges of any sort. But doing so is not always easy.

For help clearly communicating your health message, please take a look at my book Health Literacy from A to Z. You might be especially interested in the many chapters that start with the words “Know Your Audience,” which focus on those with disabilities.

Feel free to also explore my website, www.HealthLiteracy.com, or contact me directly at helen@healthliteracy.com.

New Health Literacy Out Loud interviews come out every few weeks. You can get them all for free by subscribing at www.HealthLiteracyOutLoud.com, or wherever you get your podcasts.

Please help spread the word about Health Literacy Out Loud. Together, let’s tell the whole world why health literacy matters.

Until next time, I’m Helen Osborne.

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"As an instructional designer in the Biotech industry, I find Health Literacy Out Loud podcasts extremely valuable! With such a conversational flow, I feel involved in the conversation of each episode. My favorites are about education, education technology, and instruction design as they connect to health literacy. The other episodes, however, do not disappoint. Each presents engaging and new material, diverse perspectives, and relatable stories to the life and work of health professionals.“

James Aird, M.Ed.
Instructional Designer