Neurodivergent Notes: Meet Jadyn

This episode of Neurodivergent Notes is a deep-dive into accessibility in design with Jadyn Cleary, a UX design student and accessibility advocate at Duke University. Katya (she/they, autistic & ADHD) and Jadyn discuss:

• The dangers of choosing appearance over accessibility, and how platforms like Apple’s iOS can help or hinder progress

• The importance of addressing accessibility early in the design process

• The need for inclusive user testing in healthcare

Below is the transcript of the interview if reading is easier or faster for you. If audio-only is your preference, you can also subscribe to our podcast on Spotify!

Katya: Hi everyone, I am Katya Siddall. I'm the founder and CEO of Hopper Health, and today I'm here with Jadyn Cleary, who is a student at Duke University and is doing some really interesting work in her degree program around accessibility and design. So welcome, Jaden. It's great to meet you.

Jadyn: Hi, thank you for having me. I'm excited.

Katya: Yeah, me too. I'm so excited to learn more and I'm really excited about what you are focusing on. I think what that means for the future of design for healthcare and accessibility, the fact that you are actually learning about some of these topics in school and then transitioning them into work is really exciting.

Tell us a little bit about what you're focused on in school right now, how you see that applying to a future career, and maybe a little bit about what prompted you to focus on design accessibility, and some of the other things that you're doing right now.

Jadyn: In school, I'm currently studying a self design major that focuses on disability studies and UX and web design. It's kind of a mix between the two to really explore how digital spaces can be designed to be accessible for all people. It's called digital platform design, accessible user experience.

And the reason why I wanted to do this major was because as the pandemic started, and as I started having two classes on Zoom and doctors appointments on Zoom, and just everything online, I realized how important digital spaces were becoming and how if you don't have easy access to them, there were a lot of things at that time, and then moving forward into now that you couldn't do. Just basic things- making doctor's appointments, going to school, going to work, banking.

Really anything that we consider to be necessities are now transitioning to completely online. I think that digital spaces are very important, which means that everybody needs to be able to access them.

Katya: I totally agree and I think it's so great that you're thinking about this and working on this, because even in building Hopper, accessibility is very important to us, and obviously with a neurodivergent patient population, we really have to be thinking about things like reducing cognitive load.

We've been out looking for solutions to use that are digital that will help us run our practice and it's amazing how many of those solutions that are purpose-built for healthcare do not have basic accessibility in their design, even in the administrative user experience, much less the patient user experience, so there's a ton of opportunity there, for sure.

I'm really curious, given that you're thinking about this not only as a person and a user, but also as a designer, what's something in everyday life that might seem very easy to a lot of people that either when it transitions to the digital domain becomes very challenging, or is maybe just straight up inaccessible for disabled folks from a digital perspective?

Jadyn: There are a lot of things, and a lot of things that I feel like many designers don't consider. A lot of it has to do with aesthetic preferences. There are, in general, web design codes that most people follow.

However, just those basic codes like the web content accessibility guidelines don't really help meet all of the needs that a user might have depending on their disability. For example, not really checking to see if the text color contrasts enough with the background color, so that way, low vision people will be able to read it easily, or structuring pages so that way a screen reader will move through the page in a way that is logical and will make sense to someone who is listening to the content of the page rather than viewing it, or even simple things, like making links only different colors within the text and not underlining them, so that way, a color blind user may not be able to tell that there is a difference between the normal texts and the hyperlink text.

All of these things that I feel like most people, and most designers specifically, just assume that the user will know or be able to interact with are not necessarily the case.

Katya: Yeah, it's funny, I mean, human-centered design is all supposed to be about starting from first principles from a user experience perspective, right? But there are still a lot of assumptions that happen in the digital design process that I think end up leading to some of those outcomes that you're talking about.

Why do you think that is? Do you think it's a lack of awareness? Do you think people think it's too hard? Where do you think the crux of the problem lies?

Jadyn: Yeah, I think it's multiple things. I think number one, a lot of people just aren't taught to consider these things. Especially if you don't experience it yourself then you're less likely to think like, okay, this needs to be screen reader accessible, because I use a screen reader, right, but if you don't, you might not even think or really know of that technology, especially when you think about who is designing things are often different from the people who are building things, and so someone who is a UI designer or software engineer who's actually coding, building these digital platforms will understand how to make them accessible a little more, might understand those guidelines a bit more. The designers who are making it don't.

It’s kind of like that thing you hear about with architects and engineers with physical buildings–an architect can design something that looks great and sounds great, but an engineer knows that it won't actually be feasible.

Then also just a lack of when you are doing user testing, what users are you bringing in? Are you bringing in users with a wide range of ability levels, who will have different experiences, who interact with different things. Oftentimes when personas are built and created, and are tested against for digital platforms, these owners are more based around what task the user might want to complete. Not necessarily a difference in ability between users.

I would say typically, if they're thinking of making it a little more accessible, they're thinking of the elderly as a designer. Low vision typically comes up, or certain things like if you're needing a mouse, right, with arthritis, but other disabilities or other access issues aren't necessarily coming up, or that's not really built into the design process unless there's someone there who's specifically checking for this.

Katya: I totally agree with the inclusion of people who actually experience some of these challenges both in the execution and in the testing is so important because even within Hopper, I mean, I'm an Autistic person, I have ADHD. There are things that I notice and prefer that others may not, especially when it comes to design, like I like things to be very clean and very simple, so that I understand the information architecture and kind of the process makes sense, whereas some well-designed applications, it might just be because they're sort of aesthetically pleasing versus functionally pleasing.

And I think that's a big disconnect that can happen, but I also don't have intellectual disabilities. Many Autistic people do, so what they need is very different than what I need, and it's hard to know unless you've had some experience in a lot of these situations and then we can start to develop better standards.

Jadyn: Correct. A lot of digital platforms and applications now are being designed with more eye-catching aesthetics or following certain design trends, rather than going with the tried and true methods of paid structure, simple outlines, simple designs that prioritized getting information across rather than looking cool.

A big example that I feel like a lot of people probably interact with their website is Apple. If you go on their new product launches, you do a lot of scrolling just to get to the next piece of information, and it does look cool, right? The product is moving around, there's all these colors, cool motion effects, but it's not very practical and even something like that, the motion effects on there actually can cause seizures in certain people, or can make people dizzy with vertigo, and so those effects in themselves aren't necessarily accessible, however, they look very cool, and a company (especially tech, right), that wants to be forward-thinking and show the innovation, even in the way they display their products, and even in the way their website looks, can fall into a trap of prioritizing aesthetics over usability and practicality.

Katya: You know, Apple is a fantastic example, because the ubiquity of their products also, and their products in and of themselves being accessibility tools for a lot of us– I know I personally have really struggled whenever they make a major release.

I read iBooks every single night on my phone; it's a thing that works for me, I turn off the blue light, I make sure I'm trying to get good sleep, et cetera, but when they make changes to the core iOS functionality, as an Autistic person who is trying as much as possible to automate all my tasks because otherwise it leads to overload, it takes a good month or two sometimes for those changes to settle in, and I wonder if there's some communication also around like, let us know what's going to change, so we can decide do we want to adopt that change or not.

Because a lot of times the changes that come for me do not make it more accessible. They actually make things more difficult.

Jadyn: Right, and I mean just with software updates in general, and particularly with Apple, we know that as they update things their older software programs start to not work, and especially with older devices. And so there is this– I mean, you're almost forcing us, the user, to continuously change and continuously learn new technical languages.

I mean to you know, in Apple's defense, usually what their updates are, they are improvements. It might take a long time to adjust, but eventually you notice, oh wow, getting rid of the home button on the phone actually does make it easier to use and get to where you need to be.

However, it's the lack of the option. I think that is a big issue, and how it can so suddenly change. Most people do rely on their phones for a lot of everyday tasks, and so to temporarily be thrown into a new situation where you're very confused about how this thing that almost becomes an extension of yourself works can be very distressing and cause a lot of issues. I'm not really sure how they would go about helping that while continuing to progress and make better user experiences while also giving people the option to remain where they're comfortable without making their old software or old devices obsolete.

Katya: Yeah, it's a tough one. I think the more that Apple starts to play in the health space, I think the higher the responsibility becomes to acknowledge that our devices are extensions of peoples’ selves- they are accessibility devices, fundamentally, and at their core. Watches and phones, and I mean all of it, right, so I hope there's some additional consideration given there.

At least, let us know in advance, send us a list, give us screenshots, something! [laughs] So, I guess, we're talking about accessibility and design. In a perfect world, how would you define accessibility? Kind of at a more global level, what does that mean to you?

Jadyn: To me, accessibility, and particularly accessibility in design means considering accessibility, considering difference and disability at every part of the design process and at every stage. It's very critical that it's not an afterthought, and you know, lately there's been a new term that universal design has been buzzing around, kind of this pinnacle of accessibility.

But even the thought of universal design doesn't necessarily encapsulate a perfectly accessible design process because it doesn't necessarily mean that accessibility has to be thought of throughout the design process. So for example, whenever I'm designing a website, I make sure that any time I add an image the alt text, the alternative text, goes in with that image. Because if not, I will forget, or any designer will likely forget.

Same with architects building buildings, and then, as an afterthought being like, oh, we have to meet accessibility standards, okay, I think we can put an accessible entrance here and therefore it's not the best location for it because it's an afterthought. So really, you need to consider disability differences, accessibility throughout the design process, and also, ideally incorporate those who need accessibility features throughout, whether that be them being the designers themselves or again throughout user testing, or just getting feedback from people.

It’s very important to not have a homogeneous design group doing something, because you will miss things. I mean, I'm doing disability studies at school– this is my major– and I will miss something unless I have enough people around me that have different abilities, that need different tools, to be like, hey, I think you forgot that or hey, have you considered this other option would be better?

Katya: That's actually a great point, too. I think there's an aspect of both collaboration, but also humility that has to be a part of the process– of the willingness to acknowledge, even as a professional, we don't know everything. We're not going to know every answer. It's not going to be perfect every time, and so having to reach out and find people to include.

How have you gone about that process? Even working on projects for school or internships or in other arenas, how do you find folks to give you the right input so that you feel like you're at a level of confidence where you're like, okay, I've really thought through accessibility here?

Jadyn: Depending on the project and how large it is, it can be difficult. For some of the websites I build for student orgs it's usually just me and one point person, and I do my best to try to think, okay, well, I know these guidelines. I know these accessibility techniques. Let me try to incorporate them throughout.

And they're pretty simple, tried and true, but for other projects that I've done, not necessarily related to digital accessibility, but accessibility on campus in general with the group, what was very important was going to the disabled community at Duke and being like, “Hey guys, I'm working on this right now. Do you have any opinions? Do you have any thoughts?”

And that has been so helpful because my team and I, even though I experience accessibility issues myself on campus all the time, my team and I still miss things, and our original solution was one that would not have been helpful for the community at large. If we thought, “Oh, well, we know it all, we have these different experiences,” we never would have gone out and done the user testing and asked others in the community what they thought, and we never would have gotten to a better solution that actually works for more people. We would have come up with something that was ineffective and that would have just been another tool out there that nobody uses.

So definitely like you said, humility is very important, and also not getting your feelings hurt when you're told, “I know you spent however long thinking of this and you're excited about it, but practically it's not useful or it's not going to work. There is this flaw– let's pivot.”

Katya: That speaks to the value of feedback early and often, concept testing, low fidelity prototypes, all of these design tools that are meant to build things where you're not so far along at the point that you're getting that input that it's like, oh gosh, we launched this to the world and everyone hates it.

Jadyn: Correct. I think one of the biggest things when designing and specifically wanting to ensure that your design is accessible, is that a) you have creativity, so you're thinking outside of the box, you're thinking, okay, this is the way it's traditionally done. What's the way that I can do it?

But also that you have time. Time is so important because you need the time to fail and to readjust and pivot, and you need the time to talk to people throughout the design process. Like you're saying, you don't want to get too far along to where it's like, well, we've already sunk this much time, energy, money, and we have to keep going regardless of how flawed we find out the product really is. So you need to make sure that you're giving yourself enough time and you're setting up checkpoints throughout the process to ensure that you're on the right track.

Katya: Absolutely, and I mean, gosh, every health insurance company health system would benefit from an army of people that are thinking the way that you're thinking and doing the work that you're doing, so it's really important.

I think one thing we have kind of been circling around a little bit is digital health specifically is in theory the place where accessibility should be top of mind. I mean when you're trying to help people be well, and you know that there’s a part of the population that is disabled or has other challenges in interacting with healthcare, why would you not be thinking that way?

But I think oftentimes it's really more about usability than accessibility. And so for you, as a rising professional, can you help folks understand the difference? Why are both important, but also why is accessibility something that just really needs to be focused on?

Jadyn: Yes, so usability is really ensuring that a target user base is able to understand and interact with the digital product. That's basic things like, okay, I know, or most people know that that little magnifying glass icon is a search button, so that works. But maybe if you replace that with a question mark, that's confusing so that's not usable, right, or something is a button, but it doesn't look like a button, so no one knows they can click on it to complete their task, right? So usability in the most basic sense is what a lot of designers are thinking of and looking for.

Whereas accessibility is more about, okay, let's expand what our user base can be. Let's think about all of the potential people that might need or want to use this product. And it's also about ensuring that whatever digital product it is is compatible with assistant technology.

So whether or not it can be read by a screen reader, and what that sounds like? Is it effective in getting the information across in a nonvisual way? Is there enough contrast again between the text and the background for low vision users? Is the text large enough? Things like that are really important when you think of accessibility versus usability and I mentioned before, but the web content accessibility guidelines– I think it's 2.1 or 2.2 we're on right now– those are great guidelines and most big platforms do follow it to get a generally accessible product, but there are still issues that can come to play. Even if according to that guideline you're completely accessible In practice, when you have an actual user using it, it might not actually be as accessible as it needs to be for it to be effective.

But the biggest thing with usability and accessibility is that one without the other is really useless, right? I always think accessibility should come first because everyone, regardless of your ability status, disability status, you do need things to be made accessible for you.

Now, many able-bodied people go through life not thinking of this because everything is accessible to them, but something like– a common symbol of inaccessibility is stairs, right, but stairs allow people to access various floors of a building for example. If there were no stairs in many of the buildings that don't have elevators or whatever, I wouldn't be able to access any floors, right? That is access. We do need access.

If a web page was completely black, that's not accessible, right, but for usability, if usability is what's the meat of it, like okay, there's a task I'm trying to complete whether it's for entertainment purposes, healthcare purposes, communication, whatever what have you, the usability is what makes it useful and a product that's worth putting out there in the world and one that people would want to use.

Katya: I wonder, too, because I think the digital guidelines are great, but I think they're also very sort of technically design-oriented, as far as the technical components of design, like here's the hex color, you need to have a certain amount of contrast et cetera, but what I've also noticed, especially designing for the neurodivergent community and folks who tend to have a lot of trauma, especially medical trauma, is the content– the copy itself is also a component of accessibility – I've seen questionnaires at the doctor's office asking about alcohol use and the way that those questions are worded they're already putting a negative bias or stigma, even just asking a simple question with no consideration for the audience whatsoever.

So are you thinking about this, or is your definition of accessibility also encompassing the content and the actual messages itself?

Jadyn: Typically I, in my practice, don't focus on that as much, but I will say that I feel like that falls somewhere in between accessibility and usability. More of how things are worded, how clear things are, just because usually, when they do usability testing, that's what they're looking for. They're asking like, okay, did you understand what this meant? Were you able to complete the process? Do you know what you were doing here? Things like that.

But also, I feel like a lot of times things can be very vague as well within like frequently asked questions, what questions are being asked, how they’re answered, is that what people really want to know or need to know. Or something like form fields, for example. When you were talking about how a lot of Autistic individuals are also cognitively disabled, that is a big one, where a form field where you enter first name, last name.

The most accessible thing for that to look like would be above the box where you are actually typing your name, they would put “first name”, right, but what's becoming common practice now because it's more aesthetically pleasing is where they just put first name in the actual box you type in, so as you're typing, whatever the prompt was will disappear, which, then you know a user might forget what they were typing or what was supposed to be there, and then be unable to fill out the form because the instructions for it are not clearly labeled outside of the actual field that you input.

So things like that, I definitely see being issues within digital healthcare, and just on digital platforms in general.

Katya: I completely agree. We've talked a lot about accessibility that’s maybe not the greatest, or where companies struggle, or where things get forgotten. Do you have any examples of products, companies, people who are really doing accessibility right, where you're like, wow, that's amazing, I wish that that had existed for years?

Jadyn: This is a really random website, but it's the Ministry of Education for Kenya's website, actually. If you go to that, on the top right corner, what they have is kind of like a console area where you can click and make the text bigger or up the contrast of everything, or you know, put it in like color blind modes where it's all in grayscale.

Things like that are really nice, and when I think of an issue that I was kind of grappling with when I first started this process of figuring out how do you design things that look good and are also accessible, was really, how do you make it look good and also accessible? Especially if you're working with, you know, a lot of these digital healthcare companies already have a brand, right, so they have the text that they like to use, they have the colors that they like to use.

Then it’s well, how do you stay true to that while also ensuring, for example, it’s a dyslexic-friendly font when their typeface is a Thera font, right, which is notorious for being not dyslexia-friendly.

So the answer is really customization, I think, is the way of the future, and a great thing. It takes more time to code and to implement, but just a simple toggle at the top of the screen that lets you change from the company's general branded font to like, I mean, Comic Sans is a great dyslexia-friendly font that many people find ugly, right, and so, just giving users the option to do that just like we're becoming more accustomed to with language, right, thinking like okay, language isn't the only barrier for getting information for filling up forms, for completing tasks on the internet.

There are other barriers, and so how do we allow for people to circumvent that while also staying true to what you as a designer and as a brand want?

Katya: I totally agree with that. I feel like the ability to use the promise of digital, which is customization for everyone at scale - or what feels like customization. I'm starting to see more tools pop up where you can click and skin with a dyslexia font, or fonts that are specifically developed for different audiences or being able to help folks with low vision or other sort of scenarios, so that's really exciting to see those types of solutions popping up and hopefully getting more adoption because I think it's really cool that they’re purpose built.

And it kind of takes away the argument of like, well, then we have all this other engineering work that we need to do if we want to be accessible when really it's just no, you should start with accessibility as a requirement and build your way to that.

Jadyn: Right, and ideally you know when I work on projects, and when I'm working with organizations that are early on in their branding, I always try to push, or when they ask me to design something, I just will never design anything that I think could be confusing or inaccessible.

So that way it's like you start out on that foot, but a lot of these older companies, it's kind of too late, right, like they need that recognizable trademark that they already have.

But I think in general, like I said again, giving time and just the understanding that accessibility isn't a nice thing to have– it's a necessity, and especially in something like healthcare. Thinking oh well, hopefully it will be accessible to some of our disabled patients– that cannot just be a “hopefully” or “would be a nice thing to have”– it has to be.

So just really thinking about, as a designer, as someone who's putting out a product, physical or digital, why you're putting it out and how important it is that everyone is able to access it or everyone, you know, that's reasonable within your target user base is able to have access to that.

Katya: I totally agree. This has been so great and so informative. I hope everyone, especially folks who are building in digital health, and especially folks that are building from scratch, because like you said, that's the perfect time for people really to be thinking about accessibility first versus having to figure it out later and then it becomes sort of an “oh, this is too hard of a problem to solve.”

It was so wonderful, just kind of hearing your perspective, especially for me, when I was in college, this wasn't even a conversation, so it's really incredible to see that this is something where you are able to intentionally build your career in such a way that you're advancing accessibility and just thinking about folks with disability, so that's amazing. Thank you so much.

Jadyn: Thank you again for having me to talk about this.