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The Challenges of Using Technology for Individuals with Chronic Mental Health Conditions
May 19, 2023
This month, we’re excited to share a presentation by Albert Kim, which was recorded live during 3Play Media’s ACCESS 2023 conference.
Albert is an award-winning accessibility subject matter expert and public speaker who previously worked with Doordash, Intuit, ServiceNow, Korn Ferry, Siteimprove, and Fable. He is also the founder of Global Accessibility NextGen Initiative, a global community of future accessibility champions and leaders. Albert pioneered the Neurodiversity & Mental Health inclusion in digital accessibility and currently serves as an invited expert at W3C Cognitive and Learning Disabilities Task Force as well as Mental Health Sub-Group.
In this presentation, Albert discusses the challenges of using technology for individuals with chronic mental health conditions.
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ELISA LEWIS: Welcome to Allied, the podcast for everything you need to know about web and video accessibility. I’m your host, Elisa Lewis, and I sit down with an accessibility expert each month to learn about their work. Every episode has a transcript published with it, which can be viewed by accessing the episode on the 3Play Media website.
If you like what you hear on Allied, please subscribe or leave a review. Allied is brought to you by 3Play Media, your video accessibility partner. Visit us at www.3playmedia.com to learn why thousands of customers trust us to make their video and media accessible.
This month, we’re excited to share a presentation by Albert Kim which was recorded live during 3Play Media’s Access 2023 conference. Albert is an award-winning accessibility subject matter expert and public speaker who previously worked with DoorDash, Intuit, ServiceNow, Korn Ferry, Siteimprove, and Fable. He is also the founder of Global Accessibility NextGen Initiative, a global community of future accessibility champions and leaders.
Albert pioneered the Neurodiversity and Mental Health Inclusion and Digital Accessibility and currently serves as an invited expert at W3C Cognitive and Learning Disabilities task force, as well as mental health subgroup. In this presentation, Albert discusses the challenges of using technology for individuals with chronic mental health conditions.
ALBERT KIM: Hello, everyone. My name is Albert Kim. My pronouns are he, him. And I’m an Asian man in 30s. I work as an accessibility consultant and trainer at AK Digital Accessibility. This talk will discuss some sensitive contents related to my mental health disorder, such as PTSD, so little trigger warning before we begin that if you need to leave, that’s OK as well.
So the topic, the title is the challenges of using technology for individuals with chronic mental health conditions. My goal for this talk is that I hope that audience can take away two things. I’m going to try to shine a light on how users with mental health problems use technology, and what are the challenges that we go through. And then hopefully, I can build empathy and let people start thinking about mental health when we make technology.
I, myself, have mental health conditions, diagnosed mental health conditions, such as PTSD, major depression, OCD, generalized anxiety disorder, ADHD, dyslexia. I was diagnosed with them all in different ages. It took me a long time to get full diagnosis and go through the treatments. I still do get treatment and I still take medications.
For my major depression, I was diagnosed at 19– when I was 19. When I first came to the United States, I didn’t have any friends. I couldn’t adjust to the new culture, particularly. So I isolated myself in a dorm, and curtains were all closed and room was dark. At the time, I was looking at Facebook and social media. And I see other friends looking really happy and doing their best college life and time of their lives. And it made me feel even more miserable and things like that.
Also, coming from a first-generation college student– my family, I’m the first generation to go to college. And I come from low-income family, so I didn’t really have the luxury to party or, I say, I was always on a survival mode, fight or flight, to graduate early. I also have generalized anxiety disorder. And I got diagnosed when I was 19. And that was due to my childhood abuse, domestic violence that I went through.
I was always worried if someone will hurt me. So that was the challenge that I was going through at the time. I also have OCD. OCD stands for Obsessive Compulsive Disorder. I was diagnosed with OCD when I was 25 after military service. And as I was mentioning, coming from low-income family, graduating on time and getting good grades and getting a job was very important. It was like a survival for me. So I always had a fight or flight mode.
And I was obsessed about my GPA. Like, my average score in high school when I was graduating was 98.4 out of 100. So I was obsessed about getting everything correct, everything perfect, doing everything perfectly. So I have my OCD. That’s my OCD.
And I also have PTSD. That was also right after military service. I got diagnosed when I was 25. I also have ADHD and dyslexia. And that was also after military. So I mentioned all these diagnoses, and I actually happen to have four of the top most common mental health problems that people get diagnosed with, apparently, which are OCD, depression, anxiety, and PTSD. So I think that I can talk more about these in particular so that you can understand the journey that I go through as a user as well.
But, aren’t we all going through something similar? That’s the question I wanted to ask because I feel like we are all going through some similar struggles to some extent, but we are just not aware of it. For example, endless scrolling through Instagram or Twitter at night, and you get a little heated up after watching news or reading some feeds. And then now, it’s a hard for you to calm down and fall asleep. So you open the phone again until you feel like you are sleepy. But it doesn’t help, right?
I found out that I wasn’t alone. So in the United States, suicide is the leading cause of premature death among teenagers. According to the National Alliance on Mental Illness, nearly 20% of high school students report serious thoughts of suicide. That’s 1 in 5. And 9% have made an attempt to take their lives. The rate of suicide among teenagers in the United States has been increasing for several years.
And as an example, at my college, there were nine student deaths in one semester, in the same semester. And most of the deaths were related to mental health issues. And the school hosted a town hall meeting, having all the students come in and talk about what our problems are and what we want from school, what we want the school to provide for us. And a lot of students came in and they were shouting for a better student mental health counseling office in school with more steps and treatment availability. So my school ended up making the entire floor of the Student Health Center, one floor, as a mental health office, counseling office.
And this is not just among children. As we all know, during COVID, there was a lot of struggle that we were going through. A National Institute of Health in 2021 study mentioned that nearly half of Americans surveyed reported recent symptoms of anxiety or depressive symptoms during COVID. Nearly half, that’s one in two.
And I also like to forecast that right now we are going through economy recession. There’s been a lot of layoffs in tech industry. And it has been long known that economic conditions can influence suicide rates. For example, during the Depression of the late 1920s to early 1930s was associated with marked rise in suicide, which paralleled increases in unemployment. Similarly, the Asian economic recession in 1997 to 1998 was also followed by rising suicide rates.
So we do know in statistics and surveys and everything that there is a rise of mental health challenges, and epidemic is there. But now what? Are we, as accessibility professionals, prepared for such a rise of mental illness? How much do we think about the experience of technology users who are going through mental health challenges?
I like to ask that question because I don’t think that we are thinking enough, right? Well, four principles of accessibility, perceivable, operable, understandable, robust, but are we designing things readable? Are we using abbreviations, unusual words, jargons? Is the navigation predictable? Is there unexpected focus change?
Is the error message showing or explaining what exactly the error is and how to fix it? Do we have enough time to fill out a form? Is there a timeout that triggers anxiety. Is timing adjustable? Can I increase the time limit? Is there sudden flashes? Does the video autoplay as I scroll? And I happen to come across a violent video that I didn’t want to see, and that may have triggered my PTSD. Can I control the volume of the sound or choose to opt out background audio?
All these things are from WCAG, already existing with WCAG. But it’s not enough. We’ve been so busy as accessibility professionals, trying to catch up with the just even meeting that WCAG. But WCAG 2.1 doesn’t directly mention the issues like OCD, PTSD, anxiety, and depression. And this is a classic example that shows why WCAG is only the starting point, not the end goal, right? And this is also a classic example of intersectionality, because most people with OCD have an anxiety disorder as well. And about one third of people with an anxiety disorder also have OCD.
In terms of the struggles, the exact struggles that I go through, for example, a lot of people think that OCD is about just cleaning a lot or fear of contamination or dirt. But there’s a lot more to it. There’s a lot more. And I don’t have that obsession for cleaning or contamination.
But one of the most common obsession among people with OCD is hoarding. And that actually transcends beyond the physical space for me. As a user on internet, web browsing, searching for information, I tend to hoard information, because it’s very hard for me to make a choice on what’s important and not important information.
Well, I do sort of know, but the thing is, one other symptom that is very common among people with OCD is that it is feeling incomplete and keep doubting. Oh, did I check the door? Or did I check– did I lock the door? Did I turn off the gas? All these things, keep checking, doubting– so even with the information searching on web browser, I, a lot of the times, click every link that comes up.
For example, if I’m searching for a shopping item, if I’m shopping online and I’m looking for an iPad or actually, a mouse, keyboard, mouse, things like that, then the e-commerce site would show up all these items of keyboard and mouse. But I click every single one of them because the website doesn’t have filterings to help me filter which ones have which features that I’m looking for. So it ends up becoming an endless, endless time spending just to buy a keyboard.
And the severity of it, you may be surprised that, for me, I don’t sleep sometimes. I pull all-nighter, and then I end up taking care of just one task. I also, when I’m shopping, when I see these items, it’s really, really, really challenging if there’s an endless scroll rather than pages.
Or a lot of the times, I feel like there’s such a huge lack of filters and options that I can customize. For example, can I have 50 items showing per page or 100? Like, I see that a lot of websites don’t really give that option, things like that. And well, these are not just the only challenges, but as I was mentioning, doubting and feeling incomplete leads me into also checking every link and every information, and reading again and again and again to see if I missed anything.
And another additional usage each issue that I go through is, I’m an extreme organizer in the digital space as well. So in terms of my apps, folders, files, pictures, old data history, and everything, I organized obsessively in virtual space. Just to give you a little perspective, right now, I have a 1 terabyte desktop. And I use about 100 gigabytes. And I have a lot of apps. And I work in that.
It’s very little. I use very little because I organize so much, and I back up things, or I put it to Cloud and things like that. And I end up spending hours and hours of time just organizing things online, my accounts or information files. But not a lot of softwares give you an option to organize or sort or create folders and then try to organize.
And you may think that, well, these are compulsions. Can’t you control it? Like, how are you not able to control that? Well, OCD compulsions are repetitive behaviors that you feel driven to perform. But these repetitive behaviors or mental acts are meant to reduce anxiety related to my obsession, or prevent something bad from happening.
However, engaging in the compulsions brings no pleasure for me. And I know that. And it may only offer only a temporary relief from anxiety. But it’s not long term. And I know that. And I’m conscious of me being obsessed while being obsessed. But it’s very hard for me to control it, even though I know.
So it breaks down my self esteem because I’m not able to control, even though I know that this is not what I want to do and this is not something that I want to do right now. Because sometimes, I skip meals. Sometimes, I not go to the bathroom, hours and hours of time because of my OCD.
And in the physical space, to give you some sense, when I go to any shopping mall or any new space or new environment, I always check everything, my surroundings, just to make sure that I have a grasp of where I am, the space. And I feel safe after knowing everything. So when I’m in a new environment, there’s so much uncertainty. Everything is new. And that gives me a lot of anxiety. And it also triggers my OCD. So that is a physical aspect.
But virtually, if you think about it, every new web page I open up is a new environment for me. And there is a lot of uncertainty. Well, what information will this website have? Or like, the way I navigate– or like this website is structured very different. Or every page’s navigation, you cannot anticipate. It’s very different, things like that.
So landing on a site that I’ve never been to, first thing I do is clicking all buttons in the menu and look at all of the major buttons or menu that help me understand the structure of the space, so I can feel safe, so I can feel less anxious, so I know what to anticipate in the site. I know that I’m not missing out. I know that I didn’t miss anything in the site. I went through all the information, and I know that I can move on to the other site while browsing.
But in this kind of case, having a sitemap really helps. But a lot of sites actually don’t have site maps as well. But once I get used to that environment or that one page, then when I come back, it’s much easier to navigate. I don’t have as much anxiety. I’ve clicked everything, so I know. So I may click some more, but not as much as before.
And even then, even after clicking all the buttons, sometimes, yes, I admit that I click all buttons again later and double check if I missed them because that is part of OCD. And nowadays, with more and more information being on internet, it’s harder and harder for me, people like me, to process all the information every day and save all the information and organize and process, right? So at the end of the day, I’m constantly being challenged to learn to improve my coping skills.
Even then, the coping mechanism doesn’t always work. I do take medications and do therapy all the time. But it’s not always 100%. So after I explain everything, what it does exactly is that what’s happening in my brain is exactly– it’s an overthinking. I’m constantly on an overthinking mode. I think a lot. I exhaust a lot of energy thinking, thinking, thinking, reading, reading, reading, constantly.
And my brain is as if it’s always on 100% mode, running. So I exhaust a lot of energy. So sleeping is very important for people like me. But sleep often gets interfered due to racing thoughts at night as well. And looking at cell phone and seeing contents that trigger your anxiety doesn’t help.
And symptoms like these, generally worsen when you experience greater stress, mental fatigue, when I’m tired, had little or poor quality sleep, or my health condition is bad, I’m sick, or I caught flu, or I didn’t eat well that day, then I lose the control. Those things weaken can my power to self-control. So it’s even harder to cope.
And you might think that OCD, oh, is that a temporary thing? Actually, it’s a lifelong disorder. And you can have mild to moderate symptoms or be so severe and time consuming that it becomes disabling, which is the case for me. I have to take two medications for my lifetime. And I do know that a lot of the counter-arguments, when I talk about being able to choose the content that I’m exposed to, a lot of people mention, oh, isn’t that a censorship? I don’t think that it’s a censorship.
I personally think that what I’m trying to encourage is not censoring, but giving choices and options to users. We can’t design everything for them. And there is no such one-size-fits-all, right? So giving options, me being able to select filters or search or have options to sort different things, or being able to multi-select, or being able to turn off the background audio, like giving options so I can customize my own experience is very important, because you cannot design the experience for every user.
And trigger warning is great example. Trigger warning, having a trigger warning for violent images or sensitive contents– it gives me a choice whether or not I want to click and still watch, or I ignore it and move on. But a lot of times, that’s not available option for me. I come across sensitive content all the time. And I get triggered. I relive the trauma that I went through.
So I’ve mentioned some struggles that I go through. And you see examples and things like that. But this is by no means the end. There is a lot more to mental health struggles using technology. But my intention of this presentation is to create empathy and try to let people start thinking about mental health when we are designing, when we are making a digital product. Because so far, we’ve been only focusing on physical and visible disabilities, but not invisible disabilities.
But I believe that mental health is a visible disability, the disability that I’m going through, and cognitive learning disabilities as well. Because when I’m stressed out or anxious or triggered, I automatically right away get stomach pain. It’s physical for me. That’s why I have chronic gastritis all the time, and I take famotidine all the time. So it’s very physical for me. And I get migraines.
And the most common behavior that users with mental health disorders, when they get triggered browsing web, common reaction is avoidance because I don’t want to relieve the trauma. I don’t want to get tired. I don’t want to go through brain fatigue while surfing this website, while using this website, because I have eight more hours of the day that I have to spend and things I have to do.
So brain fatigue– and I always try to avoid it. And avoidance is the most common behavior. So if you are making technology or designing websites or apps without consideration of people’s mental health, then what you end up doing is all these users will not come back. They will avoid your apps or technologies. So I think that it’s very important that we start thinking about mental health when we are designing, developing digital products and technologies.
MODERATOR: Thank you so much for sharing your story and some of your experiences with us, Albert. The first question we have is, how can individuals with chronic mental health conditions and their families advocate for better technology design and customization?
ALBERT KIM: Well, I think that’s a great question. And I feel a little supported here with that question. I think that, for me, the way I try to advocate is sharing my mental health diagnosis and journey. But it is totally up to you.
But for me, the reason why I share is to break the stigma first. We are way behind that there’s still so much stigma around mental health. And just by talking about it, as if it’s just a daily thing to consider, I think it really helps for people to start destigmatizing and feel more comfortable talking about it or thinking about mental health.
So I think that’s first step. And I think that second step is sharing feedback, honestly. I really often use the website feedback buttons, feedback forms, to submit my feedback on the websites. And I do know that sometimes I don’t get any response back. But for me, that’s a way of advocating for people like me. Because if I go through some struggle navigating that web page, then I’m sure other people like me, also have gone through a similar struggle.
MODERATOR: The next question that we have is, I also have OCD, generalized anxiety disorder, and PTSD. I feel scared to disclose this to my employer, but my requests for accommodations are often met with confusion. What advice do you have?
ALBERT KIM: Oh, wow. I mean, I have so much empathy for this question because I went through a similar struggle. For example, there was one time when I shared my ADHD and other diagnosis, and then the manager, the worker, suddenly started micromanaging me. Oh, because you’ll probably get distracted because of your ADHD, so I’m just going to try to remind you. And this is helping you.
And the two things were wrong in that action. One is assuming what others are going through based on what you know without asking, right? And second is, without asking, try to accommodate in a way that is not actually healthy, but actually triggers more anxiety for me.
So I do know the downsides of sharing accommodations sometimes. And I go through this challenge every day. What I do is, I usually try to join ERG groups, disability or mental health or any advocacy ERG groups, and try to find mentors or people that I can connect, or who’ve been in the company for a longer time. And then I ask them, I meet them, I talk to them, I get to know them and then ask them for advice like this.
Because every company is different. And the way you address– sometimes it works. Sometimes it doesn’t. And the best person who would know would be the employee who is going through a similar struggle who has been already there for a long time. So for me, going through ERG and building connections with people, like-minded people, and try to ask has been a tremendous help. I feel like I have an advocate as well. So I don’t feel like I’m alone while addressing the issues.
MODERATOR: Kind of as a follow up question on the other side of that, do you have any advice to employers who want to create an accessible work environment?
ALBERT KIM: Right. That’s a huge topic that deserves another presentation an hour long. My advice is, ask, ask, ask. Please ask, because I know that some people may feel, oh, like even by asking, am I offending somebody? But if you have a genuine good intention and really try to ask to find out any accommodations or the needs, then I don’t think in any bad way. So always ask.
One of the most important thing is building culture, and how do we build a culture? And I often encourage from the beginning, which is interviewing, hiring, and an onboarding. So during the onboarding, if you can have– I go through all the privacy, security, trainings when I’m onboarding. But I rarely go through accessibility trainings or mental health awareness, things like this.
So building some training materials and requiring new employees to go through that training, learning about, oh, how do I support other co-workers with mental health chronic conditions? Or what are the conditions out there, and how can I best support? How can I work with them, or things like this. Requiring this training I think is a really big help as well.
And during the interviewing process, if you could, try to have someone with a similar disability. Or for me, for my case, I shared with the employer from the beginning that I have these disabilities, and then requested for accommodation. And then in the interview, they intentionally brought other interviewer who was part of the ERG group, disability ERG group, so that I don’t feel alone. And that actually made me feel much included actually. And I want to encourage that too.
And supporting your organization’s ERG is also really important because of this reason too, right, because they really build a culture. But I mean, there are so many more I could mention. But because we have only a limited amount of time, and I see some other questions too, here.
MODERATOR: Yeah, there’s lots of appreciation for you in the chat. It sounds like you’re discussing some things that a lot of people can relate to. Another question we have is, are there any online communities that discuss this topic of website accessibility for individuals with chronic mental health conditions?
ALBERT KIM: So yes. W3C, World Wide Web Consortium, has COGA task force, which stands for Cognitive and Learning Disabilities Task Force. And under that task force, we have a mental health subgroup. And we also have a mental health community group. And anyone can join that mental health community group of W3C.
And you can participate. You can share your feedback on the things that we are researching and try to write about in terms of guiding accessibility– building accessibility guidelines for people with mental health challenges. So you can actively participate in that community as well.
I think that’s the best one that I know in terms of technology and mental healthy and accessibility because it kind of shows why we need to talk about it more, and why we need to have more people start thinking about it and talking about it so that we can have more advocates to work on this issue together.
I do want to mention that if anyone has questions or want to learn more about this topic, or think that your organization or anyone will benefit from this kind of content, please feel free to email me at [email protected]. [email protected]. I’m currently accepting more opportunities to spread mental health awareness for the upcoming May Mental Health Awareness Month and Global Accessibility Awareness Day. Thank you.
ELISA LEWIS: Thanks for listening to Allied. If you enjoyed this episode and you’d like to help support the podcast, please share it with others, post about it on social media, or leave us a rating and review. To catch all the latest on accessibility, visit www.3playmedia.com/alliedpodcast. Thanks again, and I’ll see you next time.